Growing up with a disability

We all do it

2009-04-30T22:33:00.004-05:00

We all do it. We don’t mean to, but we do.

The audience and judges sneered when contestant Susan Boyle walked on stage on Britain's Got Talent. When she started to sing, the sneering quickly turned to awe. In the days that followed, discussions took place about how superficial we all were to laugh at her, since it turned out she possessed exceptional talent. The consensus seemed to be that, as Ms. Boyle was an extraordinary singer, it was wrong to snicker at her perceived lack of social graces and unglamorous appearance.

Hmmm…so, it’s OK to laugh at someone who looks different and who doesn’t possess exceptional talent?

A mother with a happy, smiling baby with Down Syndrome overhears other mothers talking in the park, “There but for the grace of God go I.”

A family with a child with Down Syndrome is less graced by God? Really?

On The Tonight Show, President Obama discussed his bowling score of 129 with some self-deprecating humor, "It was like Special Olympics or something."

I wonder….would this thoughtful leader have put himself down in jest by saying "Man, I bowl like a girl!" I doubt it; he knows in his heart one doesn’t put down another or even oneself, by calling someone “a girl.” And, if he slipped, Americans across the country would let him know that girls are not inferior beings.

An article in the May 2009 Diabetes Forecast focuses on the discrimination in employment against people with diabetes. It is an informative discussion about the necessity of the Americans with Disabilities Act Amendment Act and its protection of workers’ rights However, the author, almost in hushed tones, seems to need to make the point that people with diabetes aren’t really disabled. They just need the law to have a fair workplace.

What’s so terrible about having a disability, about being in that group? What’s so terrible about needing an accommodation to level the playing field, to do the essential functions of one’s job? The unemployment rate among people who are blind is 70%. Provide accommodation for insulin, snacks, and low blood sugar, but not provide text-to-read programs or Braille accommodations?

Why do we not want to be seen to be like others who are different? Can we not look a little harder to see that we share a common humanity?

Violence against children and adults with noticeable differences is much higher than against those without noticeable differences; it is prevalent in our neighborhoods, our schools, our homes. One Texas institution even ran a coordinated “fight club,” treating their clients like dog-fighting entertainment.

We, of course, don’t condone this violence, we may not even see its enormity. But we need to be aware of it. When people are beaten because of race, religion, or sexual orientation, it’s classified as a hate crime. Can we not demand that beating of people with disabilities be treated similarly?

Legislative opportunities to support our citizens with disabilities abound. The Community Choice Act would allow people the option to receive support services in the home. The United Nations Convention on the Rights of Persons with Disabilities recognizes the essential human rights of all people. The convention has been open for signatures for more than two years, and 139 countries have signed, but not the United States.

Where are our priorities?

On this Blogging Against Disablism Day, I ask myself – where is my ableism? How do I reflect the deeply ingrained prejudices of my culture? Where am I an ableist in my individual actions? In my community actions?

I give you the same challenge. Ask the tough questions.

This post is part of a worldwide blogging phenomenon, Blogging Against Disablism Day. Be sure to head over to Diary of a Goldfish to read more perspectives on ableism/disablism. Thanks, Goldfish for your extraordinary efforts again this year.

Links: my BADD 2007 post and BADD 2008 post

"Our homes, not nursing homes"

2008-09-16T00:11:00.000-05:00

Press release from ADAPT:

ADAPT Challenges HUD, Dems, McCain on Disability/Housing Economic Crisis

Washington, D.C.---ADAPT wasted no time challenging multiple policymakers on the housing crisis for persons with disabilities who have low and extremely low incomes. After setting up a tent city at HUD headquarters just after 4 a.m., ADAPT sent 100 activists to the Democratic National Committee (DNC) offices in Washington, D.C., and another hundred to a Sen. John McCain campaign office in Arlington, VA. All three entities were presented with the ADAPT platform for affordable, accessible housing.

"The DNC was cordial, and they accepted our housing platform, as well as our invitation to visit 'DUH City,' which is HUD spelled backwards," said octonagerian Barb Toomer, ADAPT organizer from Utah."The career HUD staff that met with ADAPT told our people they had no authority to make decisions and had to wait for the administration or administrative appointees to make any decisions, so the meeting felt like a waste of time. Sen. John McCain's campaign staff not only refused to even look at our housing platform, they had eleven of us arrested by police who caused injuries to at least one arrestee."

ADAPT's housing platform points to America's20longstanding and still growing crisis in the availability of affordable, accessible integrated housing. Many people with disabilities live on benefits that are only 18% of the median income, a full 25% below the poverty level, and an amount that is less than the national average rent for a studio/efficiency apartment.

"The federal government is sending stimulus payments to middle class workers, and is providing economic relief for the mortgage crisis, and maybe even the bank crisis," said Dawn Russell, Denver ADAPT. "What about all of us who live on fixed incomes? If we can't afford the cost of housing, we'll end up on the street or being forced into nursing homes and institutions. What are the federal government, Congress, and the presidential candidates going to do to help us with our housing crisis?"

In its platform, ADAPT is asking for:
· 5000 new housing vouchers per year for 10 years, targeted to people transitioning out of nursing homes and other institutions;
· Twice as much funding for the construction of new housing stock that is affordable, accessible and integrated;
· Policies and procedures to track the new vouchers to assure they remain targeted to people with disabilities when the original user becomes ineligible or no longer needs the voucher;
· People with disabilities who reside in institutional settings to be recognized as "homeless."

ADAPT's DUH City will remain in operation twenty four hours a day until Thursday, September 18. The DUH City Times will be delivered daily to every member of Congress, and there will be daily DUH TV coverage on You Tube. Background information, real stories of real people and photos can all be accessed at www.duhcity.org.

Telethons and Pity (Repost)

2008-08-31T20:46:00.002-05:00

This is a reposting of last Labor Day Weekend's post on pity. the post is just as applicable this year, as is the blogswarm.

Today is Labor Day, and, to many people, that means it’s time for Jerry Lewis and the MDA Telethon. I had never watched the telethon, and this year I checked it out for the first time. I have to say, I didn’t watch much of it, and it was enough. I am not going to comment on the mission of the Muscular Dystrophy Association (MDA); I am not familiar it. However, I would like to comment on the destructiveness of pity.

1. Pity fosters negativity. The negative aspects of the condition are emphasized and magnified, rather then the positive aspects and enormous potential of the individual's life. Instead of focusing on what a person can do by embracing all their strengths and gifts, pity limits a person.

2. Pity promotes the view of charity rather than the view of inclusion. Charity for pity divides people into 2 groups, the “haves” and the “have nots”. The premise is that the person who “has” will help the person who “does not have,” because the “haves” feel sorry for the “have nots”, rather than because it is the morally appropriate action to do. Unlike pity, inclusion encourages respectful dialogue to discuss ways to adapt to the obstacles of society.

3. Charity often seems focused on making those that contribute to the charity feel warm-and-fuzzy-good about themselves. That is the wrong focus. An action should be taken because it is the right thing to do, because it is fair and just.

4. Although often without consciously recognizing it, the person who is pitied usually has to conform in some way to the giver’s expectations and stereotypes to receive the charity. For example, in extracurricular activities in school, it seems to me that children with disabilities often have to participate in the sport or activity that has the most willing coach or advisor, rather than in the activity that the child likes the best or has a natural affinity for.

5. Pity lowers an individual’s self-esteem. It’s hard to feel good about yourself, when you are seen as a drain and burden on others.

6. Pity towards people with disabilities gives society the false impression that disability and happiness cannot coexist. That isn’t necessarily true, and that simply serves to cause more pity.

7. Another problem with charity for pity is that it can give the impression that once the charitable act has been done, societal responsibilities are finished. A corporation that publicly writes a check to MDA is still obligated to provide an inclusive work environment with fair opportunities even though they likely won’t receive public recognition for those actions.

Check out Protest Pity, The Blog Against the Telethon, for an excellent collection of thought-provoking posts about the telethon from the point of view of people with disabilities.

"Difference is an Artist's Game"

2008-08-29T14:11:00.003-05:00

A beautiful video created by Clara Sigmon, a 13 yr old, about her brother David, who has Down syndrome. I found this video via Michelle who says, "it is very powerful and well-written/spoken." I agree! It's 4 minutes long, but well worth the time.

World Language Survey

2008-08-28T15:43:00.009-05:00

Mobility International USA, the organization with whom I traveled to Costa Rica, is conducting a survey to determine how people with disabilities learn a foreign language.

"National surveys show U.S. high school students with disabilities, while increasing in the numbers enrolled in foreign language courses, still lag behind their non-disabled peers in the percentages who study foreign languages. U.S. students with and without disabilities are close to equal in the percentages completing foreign language courses at the higher education level. However, the data does not explain what languages are being studied, how successful the learning experience is, and what are the barriers and benefits for people with disabilities at all ages. Are you a person with a disability from theUnited States who is interested in taking a survey about foreign language learning and disability? The National Clearinghouse on Disability and Exchange seeks your and other individuals with disabilities input and experiences.

Take a 10-minute Foreign Language survey online here:

I took the survey, and they ask questions about my language interests, how I study languages, and travel. It took about 5-10 minutes. Any help you can give MIUSA would be greatly appreciated. Thanks! For more info about the survey please go to MIUSA's newssite.

"People with intellectual disabilities deserve only one r-word: Respect"

2008-08-14T19:53:00.002-05:00

Thanks, Ruth for sharing this beautiful video from The ARC of Virginia and The ARC of Northern Virginia. It sums up the issues well.

Thunderous Dehumanization

2008-08-11T22:01:00.010-05:00

The R rated movie Tropic Thunder directed by Ben Stiller comes to theaters tomorrow. The film coins the phrase “full retard” to describe one of its characters.

Journalist Patricia Bauer prescreened the movie and shares some of her observations:

“Stiller’s character, Tugg Speedman, is presented as a fading action hero who earlier failed in his bid for Oscar glory while portraying Simple Jack, a character with an intellectual disability. Speedman’s portrayal of Simple Jack is featured as a movie within the movie.”

Bauer describes the stereotypical protrayal of a person with a cognitive disability,

“In character, Stiller speaks in a stilted, stuttering, adenoidal fashion, and wears overalls, bad false teeth and a classic institutional bowl haircut.”

Bauer tallies the number of times slurs are used in the movie and finds (approximately):

“Number of repetitions of the word “retard” or its variations: At least 16 in the “full retard” scene alone, not counting the uses of words like “idiot,” “moron,” “moronical,” “imbecile,” “stupid,” “dumb” and “the dumbest M*****F***** that ever lived.” All are used to describe the character of Simple Jack, who is described in an introductory segment as a “mentally impaired farm hand who can talk to animals.”

Number of repetitions of the word “nigger”: Once, said by a black character criticizing a character pretending to be black.

Number of uses of other racial/ethnic/sexual epithets: None observed.”

According to the New York Times a Dreamworks spokesperson says that the movie is a satire of the excesses of Hollywood. I’ve always been annoyed by the portrayal of persons with disabilities by temporarily able-bodied people in pursuit of Oscar or Emmy nominations, and I would truly love to see a film that satirizes the Hollywood portrayal of PWDs. However, I’m finding it hard to believe that Ben Stiller is really making a sophisticated societal satire in the vein of Mark Twain’s Huckleberry Finn. Mr. Stiller’s past films, seem to have the common theme of going for crass and crude humor, although the joke is on the zipper mishap or fart or whatever, not on an entire group of people. And, it’s not like Dreamworks is advertising this movie as a societal satire. According to Bauer,

“Early promotion of the film described Simple Jack as a “retard” and an elaborate DreamWorks marketing website that was taken down this week in response to complaints carried the tagline ‘Once upon a time … There was a retard.’”

The Dreamwork website is not advertising Tropic Thunder as a societal satire, but rather quotes critics who call the movie a “knockout of a comedy” and “the funniest movie of the summer.” So, I forgive me, Mr. Stiller and Dreamworks. I’m not buying it. Your movie is not a critical satire of Hollywood’s portrayal of the full diversity of humankind. It is another movie that slurs and hurts a large segment of our population for the sake of a joke or two.

I know some people, like one of Bauer’s commenters, would say, “Get a sense of humor!” At the root of this point is the belief that cognitive diversity is not a part of humankind, and making fun of this “other” group is no big deal. And since when does one group get to tell another group that they cannot be offended by slurs, epithets, and derogatory stereotypes? Do whites get to tell blacks to not be offended by slurs? Do whites get to tell native peoples to not be offended by dancing Indian mascots? Do men get to tell women to not be offended by curse words or sexual innuendos?

I’ve written before about the pain the word “retard” causes. Like all outrageous and socially unacceptable racial and sexual slurs, this word inflicts deep pain. Dave Hingsburger over at Chewing the Fat writes a powerful letter to Mr. Stiller explaining how much it hurts to see and hear the R word.

“You hurt me a second time today, Mr. Stiller. I am writing to tell you, to hold you responsible. I arrived home and saw on a website that it is now possible to buy tee shirts with the phrase 'full retard' on it. You are responsible for this Mr. Stiller, you wrote those words, you chose those words, you went public with those words. It is you, and only you, who must bear the consequences for your actions.”

“Full retard” t shirts?! More satire, right?

Autistic advocacy.org has an on-point video about the power of words.

Many groups are advocating a boycott of Tropic Thunder. You can learn more at the United Cerebral People blog. As Timothy Shriver, Chairman of the Special Olympics says in the Washington Post,

"So, enough. Stop the hurtful jokes. Talk to your children about language that is bullying and mean. Ask your friends, your educators, your religious leaders to help us to end the stubborn myth that people with intellectual disabilities are hopeless. Ask Hollywood to get on the right side of dignity.

I hope others will join me in shutting this movie out of our lives and our pocketbooks. We don't live in times when labeling and humiliating others is funny."

Let's make our voices heard.

Addendum: Thanks to Ruth for this link to a statement of solidarity "recognizing the dignity of individuals with intellectual disabilities" and signed by many organizations including The Special Olympics, National Down Syndrome Society, and more. Check it out.

A 2nd Addendum: Checkout 2 stories on NPR. "If one group laughs at the expense of another, we don't call that humor, we call it humiliation," explains Leonard J. Davis, Professor of Disability Studies at the University of Illinois. And Timothy Shriver, chairman of the Special Olympics explains why the r-word is hate speech.

Picture credit: Human Policy Press

Not Today… I have an appointment…

2008-08-06T16:15:00.006-05:00

I haven’t been in the blogosphere much this summer. Early in the summer, I had a death in my family. But mostly I feel like I have been swallowed up by the appointment gods.

Other than regular physical therapy, I didn’t have too many health related appointments during the school year. As I focused on my first year of college, I had kind of forgotten about the appointment world, that medicalized life. But, now, this summer, I’ve had to pay the piper. Here’s how I’ve been spending my time over the past few months :

An MRI without anesthesia (MRI machines don’t like spasms)
An MRI with anesthesia
Bone density scan
Orthotist appointment for AFO check (Hey! I don’t need new AFO’s!)
Orthotist appointment for neck splint (splint was of no help)
Physiatrist appointment
Two dentist appointments
An orthodontist appointment
An eye doctor appointment
A pulmonologist appointment
Two sleep apnea studies (hard to sleep during those!)
Wheelchair maintenance (although my role was staying home without my chair; my mother went to this appointment and the 3 appointments for van lift repairs without me.)
Wheelchair repair (despite above maintenance, my chair broke at a highly inopportune time – away from home, just before I was to give a presentation at the Illinois Youth with Disabilities Leadership Summit)
Computer training classes to help me learn Spanish Dragon, Spanish Soothsayer Word Prediction, and increase my use of keyboard shortcuts (to decrease neck pain) once per week for several weeks.
A meeting with my Department of Rehabilitation representative
A physical therapy appointment three times a week most weeks.

Because I knew that this summer would be heavy on appointments, I opted out of summer school. Good decision. And, I regularly scheduled recharging time – including a great trip via Niagara Falls for my sister’s graduation in Massachusetts, several family gatherings and some serious downtime – movies, sports, games. Unfortunately, I was not able to work on any projects that I wanted to work on --- frustrating because the busy-ness of school is right around the corner.

During this summer of appointments, I reacquainted myself with the old challenges, annoyances, and vulnerabilities of this aspect of living with cerebral palsy.

1. TIME AND ENERGY
Appointments eat up so much time. So much physical energy and so much mental energy. Mentally preparing for the visit, physically getting ready to go to the appointment, the car ride, looking for a wheelchair accessible place to park our raised roof van, waiting in the waiting room. All this before anything is even accomplished. As a person with limited stamina, the time issue alone is major, even though I have learned a few tricks from others. Although health care facilities have accessible entrances, their procedure rooms, exam tables, and cafeterias tend to be one size fits all. Quite a bit of energy goes into figuring how to make things work for me. By the time I get home, my energy is sapped and it feels as though my day has been taken away from me.

2. PROVIDER AND STAFF SENSITIVITY
Some healthcare and service providers seem completely oblivious to the fact that seeing them is not the highlight of my week. Some, no, many, use the opportunity to tell me about what a difficult day they are having – a busy schedule, an "impossible" job, even another patient who is difficult. While these problems may make a valid impact on their day, I don’t want to hear about it. I often feel the unspoken message, “I hope you are not going to add to my hassles today, David.” And, listening to the secretary’s or repair person’s woes is just a waste of my precious time (see number 1). Just as I am not at this appointment to make someone’s day miserable, I am also not here to make the day pleasant. I am here to meet a need that I have. Simple as that. I am here not because this is how I’d like to spend my day, but because I need some tool or advice to be able to do what I want to do.

3. ETIQUETTE OF FAKE, NICEY-NICE SMALL TALK
There are some unspoken appointment etiquette rules that a patient must follow. And these can drive me nuts. I don’t know if small talk drives everybody crazy – maybe it’s just me or just because I have so many appointments, but I get really tired and annoyed with chitchat. I don’t always feel like being polite and making small talk with providers and staff. If I am tired from other stresses or in a bad mood, I feel like I have to hide that. There’s a performance aspect to many appointments that is difficult to describe – be nice, friendly, and sweet. And if I’m called “buddy” or “honey” by someone who is meeting me for the first time, I just smile. Sometimes I feel an underlying message that being liked gets better care. (This coupled with number 2 above multiplies the aggravation. And, of course, number 1 – my time- goes downhill as well.)

4. APPOINTMENTS ALWAYS LEAD TO MORE APPOINTMENTS. More tests, more procedures, followup appointments, etc., etc. I am learning from my mom to always question whether I really need X procedure and could I return in 6 months instead of 3 months and let’s have Test A while having Test B.

5. IDENTITY MOLDING
Finally, even though I think I am secure in my identity, multiple appointments could consume my identity if I let them. I have to tell myself that I and my time are worth demanding repair service or prompt attention for a need even when the provider finds the timing inconvenient. Running through my medical history or listing what I cannot do or being poked and prodded and told what’s “wrong” with me is really wearing on the self esteem. I try to keep my guard up, because you never know when an ego blow might come. I have to work to not let myself get sucked into the idea that I am defined by somebody else’s list of my “problems.”

I have to add that I have some wonderful providers and have met some wonderful staff – people who are thoughtful, respectful, and efficient with both their time and my time. I am so very appreciative of them, their expertise, and their attitudes. And I even have a handful with whom I do have a personal relationship. But, even under these circumstances, going to an appointment is never how I’d choose to spend my limited energy. There’s a lot else to do with my life!

Carnival Day!...A Bit Late

2008-05-27T15:27:00.004-05:00

The 38th carnival is hosted by Kathryn at Ryn Tales and has the theme of Spirituality and Disability.

In her introduction to the carnival, Kathryn eloquently reflects on raising her daughter Ellie and how it has influenced her as a person. “But this experience in all is magnitude has helped me unfold as a soul. I am more patient than I was before, I am happier than I was before Ellie, and I am way, way less ignorant about disablism.”

In this carnival, there are many reflective posts on God and on life in general. It’s a great carnival and I hope you’ll check it out!

Carnival Day!

2008-05-08T15:44:00.004-05:00

Stacey from Crip-power has put together a wonderful collection of posts. She states that this carnival “focuses on the celebration of disability culture, struggle, people, history and identity." There are many thought-provoking posts that examine identity and culture through different angles. I hope you’ll check it out!

Facing the mountain

2008-05-06T16:42:00.002-05:00

“Even more shameful are my co-workers. People who work to support other people with developmental disabilities. They still throw that word around without thought while at the same time saying how much they care for those they work with. It makes me angry, but also feel hopeless and helpless. How do we stop it?”

This comment was left on a post by Dave Hingsburger about the pain and anguish caused to a teenager by the use of the word, “R#tard.” Dave was sitting in a hotel lobby near a girl with Down Syndrome, and saw her reaction when another teenager walked by and was teased by her friend who had accidentally dropped something, “Stop being so r#tarded, will you?”

Dave said of the girl he was sitting near, “Hurt flooded her face. R#tard pierced her heart, her soul…”

Although I have had many self-esteem reducing experiences in my childhood, I consider myself strong (thanks in part to the blogging community). But, like I’ve heard from people I have interviewed, old wounds of dehumanization can be violently and unexpectedly torn open.

Yesterday, my mom said she saw hurt flood my face. I felt my heart pierced. It only lasted a moment, but it was there.

I had let my guard down because I felt I was in a “safe” place, a major rehabilitation clinic. People with various impairments walked and rolled all around the building. I have been here many times, and the staff has been respectful, kind, and professional.

So, I never saw it coming. I was in an exam room for my 3rd appointment of the day. The door was open, and I could hear the lighthearted goings-on in the office area across the hall.

A staff member was having trouble using the stapler. Loudly, she proclaimed that she must be “such a r#tard!” She continued bubbly chattering with her coworker, and then called in her next patient from the waiting room.

The hurt, painful as it was, lasted just a moment. Then my emotions quickly went from shock to anger to sadness. I thought about the new parents, sitting in the waiting room with their twin 2 year boys, hearing that word in this place. This supposed shelter from the outside world. This place of support. These people of authority.

My mom and I deliberated about what action to take. It helps having a trusted person with you to sort through it all. We couldn’t speak with the staff member because she was in with her patient. My mom wrote her a note, and we decided to speak with the supervisor. The supervisor listened respectfully and apologized for her staff member. She said that the organization did indeed have language sensitivity training, but also stated that sometimes people have trouble with “slips of the tongue.” She also assured us that she would speak with the staff member. Today, we received a voicemail, with a sincere apology from the staff person, who said that she didn’t even realize that this word had slipped out of her mouth, and she was horrified at her action. She thanked us for calling her on this act.

It is so disheartening that this slur is so ingrained in our culture that even well-meaning professionals who work with PWDs, casually through their language, degrade and dehumanize the very people that they support with their services.

It seems that working to abolish the slur, “r#tard,” is like climbing a long stubborn mountain. It seems impossible to get to rid of a word that is so deep in our culture. Fighting dehumanization is wearying and exhausting. And yet I believe we all must keep at it. We must keep advocating. The only way to we can really change the culture and end the discrimination is to bring these issues to light.

Links: Wheelchair Dancer has a comprehensive post on the use of language and disability. Andrea and Penny Richards give lists of alternative words that do not put down as Penny puts it, “whole groups of perfectly decent disabled people in your disapproval.”

And, thanks to Andrea for this link: The “r” Word Campaign.
“Some people have mental retardation. While mental retardation is not a bad word, when used to describe someone or something you think is bad it becomes another thoughtless hurtful word. People with mental retardation are not bad, their condition is not bad, the prejudice and discrimination to people with mental retardation is BAD…and WRONG! Please stop using the word ‘retard’, it hurts people with disabilities.”

Mistaken Identity

2008-04-30T21:52:00.008-05:00

I've seen it happen to able-bodied people once in awhile. Someone approaches and starts a conversation, and after a moment or two of confusion, there's a realization that the approaching person has mistaken my friend or family member for someone else – someone of the same race, similar height and weight, similar age, similar facial characteristics.

“I’m not who you think I am; you’ve got me mixed up with someone else.”

Humbly backing away, the bewildered individual is embarrassed and apologetic, “How silly of me! I’m so sorry.”

It might be surprising to hear that I have never been confused with a person of my same build, same age, same facial characteristics, same race. But, I, a brown-eyed, light-brown-haired white male, have been confused with males significantly larger than me, smaller than me, older than me, younger than me, and surprisingly, even of different ethnicities! A blond child, I was often mistaken in my own school by teachers, staff, and students for a dark complexioned student of Laotian descent who was much smaller than me, or, with an older blue eyed student who was 40-50 pounds heavier than me. Over the years, I have been mistaken as well for a black male and a male of Egyptian descent by people who know one or both of us. And, when I travel, strangers often mistake me for someone they know; it’s a regular part of visiting a new place.

My silliest incident of mistaken identity occurred when I was an audience member at a theatrical production. The show’s lead actor, onstage for most of the 2 ½ hour production, had just completed his final bow. The curtain closed; the lights came up and the crowd slowly started to leave the packed auditorium. A woman maneuvered her way over to me and said, “You have a wonderful voice.” She kept talking, and it took me a few minutes to process that she had confused me with the lead actor, a black-haired teenager of Indian descent with a very small build. Not only would the actor still have been in full costume, he would have had to do a major leap over the audience to get to the back of the theatre in such a short time.

How could this happen, you wonder? Why these repeated bizarre mix-ups??

Because in all these cases, both I and the person I am mistaken for, use a wheelchair.

And, in most cases, after I tell the offender, “You have me mixed up with someone else,” the response is not apologetic. No embarrassment. Just a laugh at the “coincidence” of it all. They seem to think that theirs was an obvious, easy, natural mistake that anyone would make.

You see, when you use a wheelchair, some people don’t look you in the eye, don’t take in your personal physical characteristics, let alone see you as a unique distinct complex individual. They see the equipment, not the person.

And this inability to see is where ableism starts.

I have come to believe that seeing someone for only the equipment, or for just one piece of his or her external appearance, is a root cause of discrimination. Seeing a wheelchair, a white cane, a speech impediment, a gender, a skin color and then making an assumption that we now know the individual gets us into trouble. When we believe that we know someone’s identity and that they and their “group” are one, not only are we wrong, we are arrogant and we open the door to justifying to ourselves our superiority. There begins the slippery descent down into the swamp of dehumanization.

If you have a story about mistaken identity, feel free to share it in the comments.

Be sure to check out the other posts for Blogging Against Disablism Day 2008. Thanks Goldfish for once again organizing this amazing event!

New to the blogroll

2008-04-30T11:22:00.002-05:00

With the busy-ness of life, I've gotten behind on updating my blog.

Here are a few additions to my blogroll:

Radar: The Disability Network - This is a new blog from RADAR, the disability rights network of the U.K. They have a vision for, "a just and equal society whose strength is human difference." The blog has a varied mix of noteworthy stories.

Also from the U.K. - Ableize - a "resource directory of disabled aids information products services and advice," run for and by persons with disabilities.

Coping with disability has original articles on living with cerebral palsy, and also regular updates on and links to a variety of health, disability, and social news.

Disabled Soapbox - A wealth of advocacy for disablity rights, including right now the coverage of ADAPT activists advocating for (and being arrested for rallying about) the Community Choice Act in Washington, DC.

Bits and Pieces of Me is a blog written by a mom sharing her experiences as the parent of Lena and Kassie, her twin daughters born very prematurely.

My Disability Blog shares a wealth of information about disability and the social security system. Tim's most recent post, Being Prepared for a Social Security Disability Hearing, discusses the process and how to be best prepared for success.

Calling you: Blog against ableism/disablism!

2008-04-27T21:26:00.004-05:00

On May 1, Goldfish will host the 3rd Blogging Against Disablism Day. (You can check out the last two B.A.D.D.s from the links in my sidebar.) This is a day of coming together to write about discrimination against persons with disabilities, also known as ableism or disablism. Last year more than 170 people wrote on a range of topics covering personal experiences, societal experiences, education, health, children, intersections with racism and sexism and more.

I really encourage YOU to share your thoughts and experiences. If you have a blog, read the details and sign up over at Diary of a Goldfish. If you don't have a blog, I'd be happy to post your writing here - just send me an email (address in my profile). This is a time for solidarity and support of one another. I especially encourage parents and allies to contribute. You don't have to have a disability to be opposed to discrimination against people with disabilities. All are welcome.

A note on language - there is a whole assortment of language about disability - handicapped, disabled, disability, etc. etc. May 1 is a day of language amnesty, write in the way that works for you. Goldfish has put together a language guide for reference.

Hope to see you May 1!

Carnival #36!

2008-04-25T19:25:00.002-05:00

Disability Blog Carnival #36 is up over at Abnormal Diversity. The topic is a difficult one - ABUSE. Yet, it's such an important topic. Abuse of persons with disabilities, both subtle and overt, both by individuals and by society is incredibly prevalent, and also incredibly unacknowledged. I especially identified with terror and vulnerability of Kay's post.

Unfortunately, I've been very busy and didn't have a chance to write a post for this carnival. And a few people have emailed me about my blogroll - I haven't had a chance to update it in a while, but I will soon.

The next carnival will be on the topic of Disability and Identity. Head over to Crip Chick's for the details.

Carnival Time!

2008-04-11T11:41:00.005-05:00

"A diamond is the ultimate gemstone, having few weaknesses and many strengths. Formed under pressure, the diamond is the hardest substance found in nature. There is nothing on earth that is stronger, more durable and enduring than diamonds. An uncut diamond represents the untapped potential that lies in all of us."
-Jodi Reimer

Head on over to Carnival #35, "The Hardest Part." I have been too busy with school to post, but lots of other bloggers have written great stuff on the topic of "The Hardest Part." Jodi Reimer, at Reimer Reason, has put together a wide assortment of posts on personal issues - pain, loneliness, vulnerability, lack of privacy; family expectations; health care providers; and the ever present societal issues of prejudice and discrimination. When life settles down for me, I'll be checking out the posts. I hope you'll head over, too.

A Blogswarm on the UN Convention on the Rights of Persons with Disabilities

2008-03-30T19:50:00.007-05:00

One year ago today, the United Nations Convention on the Rights of Persons with Disabilities was opened for signatures. It had been adopted by the U.N. in December, 2006, and on March 30, 2007.

"There were 82 signatories to the Convention, 44 signatories to the Optional Protocol, and 1 ratification of the Convention. This is the highest number of signatories in history to a UN Convention on its opening day. It is the first comprehensive human rights treaty of the 21st century and is the first human rights convention to be open for signature by regional integration organizations."

The goal of the convention is a simple one - recognize persons with disabilities as people - people with rights. You can find the complete document and also answers to frequently asked questions about the convention are answered are answered at the U.N.'s Enable site. To date, 17 countries have ratified this important human rights convention.

I hope you'll head over to Ratify Now for a blogswarm. What's Ratify Now? If you read the first comment below, Andrea explains that it is an organization with worldwide membership focused on the ratification of the Convention for the Rights of Persons with Disabilities. What's a blogswarm? Head over and you won't be disappointed. You'll find information about the convention and the thoughts and perspectives on this historic convention of writers from around the world.

And the United States? We have not ratified the convention.

Check out the blogswarm!

April 2 - Edited to clarify Ratify Now.

Carnival time!

2008-03-27T23:04:00.003-05:00

The 34th Disability Blog Carnival is up over at Andrea's Buzzing About. The theme is "Breaking Out." Lots of great links. I hope you'll check them out!

Governor-designate Paterson

2008-03-14T13:33:00.007-05:00

On Monday, March 17, 2008, David Paterson will be sworn in as governor of New York. He will be the first legally blind governor in U.S. history.

Fifty-three year old Mr. Paterson has been blind since childhood when he had an infection in his eyes. In a New York Times article, Mr. Paterson says, "I don't act the way I did when I was 17, like I can do everything myself, because I realized the minute I do that, no one helps me. So I learned to be a little more pragmatic about life." Mr. Paterson receives his briefings via lengthy voice mail messages from his staff, and so that he doesn't need to use notes, he memorizes all his speeches. He also says that he has felt more discrimination from his blindness than from his race.

Steve Kuusisto shares his thoughts on Paterson's governship in an op-ed piece in today's New York Times.

"New Yorkers will no doubt discover that Mr. Paterson will take great interest in the details of governance and that this will require him to take sincere interest in people. He'll ask more questions than your average politician. And those who work in his administration will find that they are important not simply for knowing things but because they can describe how they learned those things in the first place. That's perhaps the most important thing for the public to understand about professionals who are blind -- we are by nature tireless in acquiring information, and we remember virtually every detail of what we read or hear."

For further interesting information - Penny Richards offers a comprehensive list of blind elected officials through history over at Disability Studies.

Carnival Day!

2008-03-13T11:00:00.002-05:00

Head on over to Wheelie Catholic for the 33rd Disability Blog Carnival, "Appreciating Allies." As usual, lots of posts from lots of perspectives. Check it out!

Helen Keller photo discovered

2008-03-12T19:52:00.002-05:00

Last week, the New England Historic Genealogical Society released this wonderful photograph of a young Helen Keller vacationing in Massachusetts in July, 1888. She is sitting outside on a chair and holding a doll. Her teacher, Anne Sullivan is next to her. Interestingly, "doll" was Helen's first signed word, in March of 1887. You can read the full story here - it covers some details about Helen's life and also the story behind the photograph.

Bang Long - gentle, tough, inclusive

2008-03-07T14:34:00.004-06:00

Bang Long, Jr. died last Friday. Mr. Long was a tireless advocate for the rights of people with disabilities. According to his obituary in the Chicago Sun-Times, he was born in 1943. He had a long history of being an advocate for humanity. He had worked as a nurse’s aide in Memphis, helping people cope with tear gas during a riot that occurred while Martin Luther King Jr was in town. He was present for the signing of the Americans with Disabilities Act and was very active in disability rights in the state of Illinois.

I had the pleasure of meeting Bang Long at last year's Coalition Of Citizens with Disabilities in Illinois (CCDI) Conference. He presented me with the Markeeta Award, an annual Illinois award given to a young disability advocate. Mr. Long welcomed me to my first conference and was encouraging and kind. Many years ago, he had worked with Markeeta Vincer and her family in her pursuit for inclusion in the Chicago public schools.

Cilla at My Big Noise shares her recollections of Bang Long. They had been friends for 20 years, and she recounts his asking her to dance, and his varied activism experiences.

I only met Bang Long that one time, but he left an impression on me. He was gentle, tough, inclusive, and welcoming. I am thankful that Mr. Long requested that we take the above picture.

I am grateful to have had the opportunity to meet Mr. Long. A lesson I learn from him is that advocacy for our fellow humans is a lifelong endeavor, and comes in many different forms - disability advocacy is just one form. As fellow humans, we each other’s allies and supporters.

Rest in peace, Bang Long, Jr. Thank you.

Edited to add 2 more reflections on Bang Long: Karen Putz (aka Deaf Mom) and Valerie Brew-Parrish

Inclusive Theatre

2008-02-29T21:45:00.006-06:00

Tonight I saw the musical Working at Dominican University. I love Studs Terkel's books, and this production was very enjoyable. What was particularly cool was that this musical was signed. One of the interpreters was an ensemble performer - she danced and signed- and the other was in the traditional American Sign Language role, a little off to the side of the stage interpreting what was spoken and sung. This is the first time I have ever been to a play or musical that was signed, and it was great to see it at my college!

There's one more performance tomorrow at 3pm. For anyone who lives in the Chicago area (Karen?), it would be a great way to spend the afternoon. Tickets are only $15. The show is about 1 1/2 hours long.

The logo above is from Working the Musical website.

Carnival Day!

2008-02-28T15:52:00.003-06:00

The 32nd Carnival is up! Shiloh at Sunny Dreamer is hosting, with the theme, Standing Outside the Fire. Lots of links to a variety of great posts. Hope you'll head over!

Dave's Faves

2008-02-25T22:45:00.008-06:00

A few good reads:

Another study on the employment of people with disabilities -
"In a first-of-its-kind study unveiled to Chicago-region business leaders on January 28, a team of researchers at DePaul University discussed research results that found employees with disabilities from the healthcare, retail and hospitality sectors in the region were just as dependable and productive as employees without disabilities. In addition, researchers also discussed research results that showed accommodation costs associated with workers with disabilities were often minimal and well worth the expense."

I got that link from Access Living, which also had a link to a story about Marca Bristo, being honored as a Chicagoan of the Year.

Another great read from Steve Kuusisto: How to Write Able-ist Prose.
It starts with,

"I once knew a disabled (insert "Man" "Woman" "Child" HERE)."

And, a new blog: Crimes Against People with Disabilities, It's time to speak up... Yes, indeed.

Book Meme

2008-02-24T21:08:00.003-06:00

Connie tagged me awhile ago in the book meme, and I'm finally getting to it. Here are the rules:
Go to page 123 of the nearest book.
Find the 5th sentence. Write down the next 3 sentences.

I have a lot of books near me, and several are textbooks. Who wants to hear sentences from A Sequence for Academic Writing? So, I thought I'd pick up my fellow blogger friend, Steve Kuusisto's book, Planet of the Blind. It's Steve's memoir, and it's a great read.

"'The brave one sleeps for a time/Of course the past is with her, /Beauty
dissolved into thingness, narrow streets/Where she goes disguised.'
He pauses.
"Oh please!"

Good thing the meme doesn't ask for the next sentence, as this is a G rated blog.

Now I tag Josh Winheld, Emma, Andrea, Karen Putz, and Seahorse.

Caught in the act!

2008-02-23T19:09:00.002-06:00

Be careful ... you never know when Dave Hingsburger might be watching!

"Oh, God, I'm going to read about this in your blog aren't I. Oh, God."

Hilarious!

Josh Winheld on Duchenne Muscular Dystrophy

2008-02-21T08:54:00.003-06:00

Josh Winheld has been sharing his thoughts about living with Duchenne Muscular Dystrophy in yesterday's New York Times and also the Philadelphia Inquirer. Check out Josh's blog for the links and his views on the NYT story and the Inquirer coverage. You can also learn about Josh's recently published memoir, Worth the Ride: My Journey with Duchenne Muscular Dystrophy.

31st Carnival!

2008-02-14T16:37:00.004-06:00

Head on over to Emma's blog, Wheelchair Princess, to see the latest carnival, Superman. Lots of great stuff on this interesting topic. Enjoy!

From the carnival:

I can’t stand to fly
I’m not that naive
I’m just out to find
The better part of me

I’m more than a bird:I’m more than a plane
More than some pretty face beside a train
It’s not easy to be me

Wish that I could cry
Fall upon my knees
Find a way to lie
About a home I’ll never see

It may sound absurd:but don’t be naive
Even Heroes have the right to bleed
I may be disturbed:but won’t you conceed
Even Heroes have the right to dream
It’s not easy to be me

Up, up and away:away from me
It’s all right:You can all sleep sound tonight
I’m not crazy:or anything:

I can’t stand to fly
I’m not that naive
Men weren’t meant to ride
With clouds between their knees

I’m only a man in a silly red sheet
Digging for kryptonite on this one way street
Only a man in a funny red sheet
Looking for special things inside of me

It’s not easy to be me.

Emma says,

"To me, that song is a song that sums up disability. Or at least the way in which we can appear to the people who don’t take the time to get to know us properly, to get beyond our exterior and see who we really are inside."

So, go to the carnival and see more wonderful insights!

Man dumped out of wheelchair by police officer

2008-02-12T22:27:00.005-06:00

Check out this CNN story with video of a quadriplegic dumped out of his wheelchair because the police officer apparently didn't believe he was disabled. Incredible!

Update: Brian Sterner, the man who was dumped out of his wheelchair, was on the Today Show this morning. I didn't see it, but here's the link. Other links to coverage of this abuse can be found at Scott Rains' blog.

Another update: Ruth at Wheelie Catholic shares her stories of people not believing her disability and being abusive, including one time when she broke both her wrists. Her incidents just weren't caught on camera.

A positive employment story

2008-02-11T21:17:00.000-06:00

ABC World News had a story tonight about the Walgreen's Distribution Center in Anderson, South Carolina.

"Though the job market continues to be a bright spot in an otherwise
troubled economy, with the unemployment rate still just 4.7 percent, the national unemployment rate for disabled Americans is more than 44 percent.
Almost two decades after the first President Bush signed the Americans with Disabilities Act into law, disabled Americans continue to face enormous barriers in the workplace. But in this building, abled and disabled workers do many of the same jobs and earn the same pay."

This Walgreens is different. 700 employees and 40% have a disability. Check out the video or the written transcript. It's well worth a look. I would have liked to have seen more about the training, accommodations, and profitability of the employment. It looks like the employees are very satisfied, and I imagine turnover is very low.

Walgreen executive Randy Lewis speaks of the success of the effort and says that any company could do what Walgreens is doing. He says,

"This building is not about charity. It's about opportunity."

This is so much better than how Walgreen's competitor addresses employment and disability issues. Way to go, Walgreens!

Where is the outrage?

2008-02-09T13:38:00.001-06:00

The hate crimes against people with disabilities continue. Last month, two teens and 1 young adult were sentenced in the U.K. for the brutal murder for sport of Brent Martin.

Today, it is reported in a Cleveland newspaper that 3 12-year old students, 2 boys and 1 girl, beat their 12 year classmate, who has cerebral palsy.

“A 12-year-old boy who has battled cerebral palsy and seizures his entire life couldn't fight back last week when three students attacked him after a tutoring session.
The sixth-grader felt pain in his groin after the attack and had to have a testicle removed the next day, his mother said.
East Cleveland police are investigating the attack, which happened Jan. 31 at Prospect Elementary School.
Detectives are waiting for a doctor to determine whether the beating
caused the injury, Commander Dan Heglaw said.
Three sixth-graders - two boys and a girl - kicked the 12-year-old in the back and smacked him in the head about 5 p.m., an hour after school security left the building, police said.”

This was not the first time this child was hurt by students.

“The boy is often targeted by other students because of his medical condition, a neurological disorder that impairs people's ability to control their movement and posture. He was struck by another student in November, his mother said. The school implemented a "no-bullying policy" after that attack, she said.”

This beating occurred on school property after a tutoring session. This student has been targeted more than once by his classmates. The paper reports Superintendent Myrna Corley’s response to this latest beating,

“It's an unfortunate situation.”

UNFORTUNATE?!! Better words might be: Outrageous! Will not be tolerated in my school! A hate crime that will be fully prosecuted!

The 3 students have been suspended, but that is not enough.

Where oh where, do 12 year old kids learn that violence and abuse of those that are different than them is acceptable? I just don’t believe that children are born hating. Our society is teaching the dehumanization of people with disabilities. It happens all the time in many, many forms – from our language, to our lack of inclusion, to the lack of coverage and outrage about this physical violence. Violence against with disabilities is a hate crime.

And, I think this boy deserves a fully paid transfer to another school where he will be safe and where he can do what he is supposed to be doing at school - learn.

UPDATE:
Related posts -
Disability Rights: Why it is YOUR problem
Dave
And more violence...
Respect and Disability Advocacy

"ADA Authors Rebut Critics of ADA Restoration"

2008-02-09T11:02:00.000-06:00

Reunify Gally is full of links and information about the ADA Restoration Act. The most recent post shares a letter that Representatives Hoyer and Sensbrenner wrote in response to points raised in opposition to the ADA Restoration Act. These representatives were part of the drafting of the original ADA and are now leaders in the bipartisan work on the Restoration Act.

Here's a portion of the letter:

"The clarification of the definition of the ADA is by no means a “radical change.” Moreover, it will ensure that those who “are deserving of” the ADA’s protections will be covered by the law. We hope you agree that people “deserving of the ADA’s protections” include the many people with epilepsy, diabetes, heart conditions, depression, multiple sclerosis, cancer, and intellectual disabilities who have been told by the courts they are not “disabled enough” to gain protection under the ADA."

And,

"Finally, passage of this law will not overwhelm the EEOC and cause it to be unable to do its job. The statistics on the number of charges filed with the EEOC, and the number of findings of reasonable cause, are closely comparable to other civil rights statutes protecting our citizens. As you are aware, any individual who charges discrimination under any of the civil rights laws must prove that the discrimination occurred because of an illegitimate factor."

Check out this post at Reunify Gally for both the criticisms and the full response to the criticisms.

For parents: my cerebral palsy

2008-02-05T15:16:00.003-06:00

I have decided to share a little about my cerebral palsy because I see that parents of young children with CP have so many questions. I had been reluctant to share too much personal information, because I don't want it to detract from what's really important - namely, that people are people, disability is part of human diversity, and that I think loving your child is the most important thing you can do as a parent. Working to reduce the societal barriers to inclusion and respect comes second. I know that the parents whose blogs I check out now and then get that. So, this is for you parents. I hope it helps in some way.

To start - my childhood was a happy one. The fact that kids with disabilities have happy childhoods should not be a surprise, but to some it may be. Here's a study confirming that point.

I have spastic and athetoid quadriplegic cerebral palsy. Over the years, I have met many other people with CP, and one thing is for sure - cerebral palsy is different in each one of us. I have high tone and spasms in my legs and arms, and low tone in my trunk and neck, and athetosis in my arms and hands.

With CP, life is full of complicated decisions. I've learned that every decision has a positive and negative. Every choice has a positive consequence and a negative consequence. Sometimes the consequences are short term, sometimes they are long term. And, often, when making a choice, you just don't know what the consequences will turn out to be. As I now weigh decisions on my class schedule, exercises, rest, and fun activities that challenge me physically, I understand more how difficult it was for my parents to make decisions for me when I was younger.

Therapies:
As a child I had physical therapy, occupational therapy, and speech therapy. Mainly, I have had a lot of physical therapy. My physical therapists worked out of Children's Memorial Hospital (and are now at La Rabida Hospital). Their philosophy entails an emphasis on prone work to strengthen core and trunk muscles. I still do physical therapy, and I am still making progress. Yes, you heard that right - at 22 years of age, I am continuing to make progress. While I have worked many hours with professionals, my parents were the key people. A great deal of work was done outside of “therapy time” – work with my parents and also on my own. When I was younger, my parents had exercises and stretches that they did with me as part of a routine - like each time they changed my diaper they would stretch my hips and hamstrings. The biggest part of my work was spending huge amounts of time prone (lying on my stomach). "Prone lifts" - reaching for toys, playing with blocks, pointing to pictures in books, lying prone in my stroller were just a normal part of my day. When I was younger, I spent a great deal of time on my stomach, and had sitting time and standing time as much smaller parts of the day. I played prone with my cars and trucks and played prone in the swimming pool; it was just part of my life. For a time, I even went to school prone. When I played while lying prone, I didn't know I was strengthening my back and trunk muscles and gaining head control. At my house, it's just how we did things. I never had walkers or gait trainers because my therapists felt that I would use my tone to operate those things and that would limit my abilities more than help them. My parents carried me around a lot, brought things over to me, and I explored the world on my stomach. I did have a stander when I was younger.

Today, I’m most comfortable lying on the carpet where I can roll from my back to my stomach and change position on my own. And now, I take time throughout my day to do prone lifts on my own. While I do not like doing the lifts, I notice that when I take time off from them, my trunk and gluteal muscles get much weaker, and I have more trouble sitting and standing and also more pain in my back and legs. When I return to doing the lifts, my muscles get stronger again.

I wish I didn’t have to do so much bodywork – I think my parents and therapists were smart to mesh as much of it as possible into our daily life. But, I really got sick of the formal therapy work. I hated (and still don't like) the time it takes in my life, but the benefits of working on my body are so great. I used to think that I was going to walk - therapists and doctors told me that it was possible. But, it didn't happen. I've realized though that the primary benefit of taking care of my body is not about walking. Walking isn't that important. The real benefits are in helping my body do the best it can for me. With a stronger body and less pain, I can travel (like family vacations here and here and my trip with MIUSA to Costa Rica); go to college; sing; blog; and just do more and have more fun. Without the work, my hips and back would be pulled out of alignment by my spasticity, and that hurts. In the long run, doing therapy takes less time and is less hassle than the alternatives of pain, decreased function, and multiple surgeries. Because of my work, I have good head control and I can sit in my wheelchair for several hours at a time. Those two things are really important to my functioning. Also, because of my work, I can do a standing transfer with the assistance of one (knowledgeable) assistant. This is really important, because without a standing transfer, I would have to be lifted from one place to another - say on and off the toilet. My mother is no longer able to lift me, and without a mechanical lift, my options to go places would be very limited without a standing transfer. Now, my mother (or someone else who is trained) can help me transfer. While I'd rather be totally independent, this assisted transfer is extremely helpful to my daily life. I know that without all my work, I would not be able to do that.

AFOs/Casts/ splints
AFO’s – I have had AFO’s all my life. If made properly (and that usually takes quite a few annoying, time consuming adjustments), I don’t find them uncomfortable. I think it was harder when I was growing than it is now. I do find that the AFO’s get very cold, so I like to have a warmer pad inside the AFO on cold days. (Cold feet increase my spasms.)

For most of my life, I slept in a night body cast for several hours each night. This kept my trunk straight, my hips intact, and my legs abducted (apart). As a young child, I didn’t mind it; as an older child and teen, I hated it because it was very uncomfortable to sleep in that position since my spasticity was so great while I was growing. I could have tolerated it when awake, but sleeping was another story. But, it met the important physical goals that it was designed for; my scoliosis is minimal and my hip sockets are well formed. I have mixed feelings about using the cast.

Splints – I do have a splint that keeps my legs separated that I sometimes use during the day now. I don’t mind using that splint, and I feel the benefit of not having my legs cross.

Botox:
I had botox on my hamstrings, and for me, it didn’t help at all.

Serial casting:
I had serial casting twice. The first time was when I was about 8, and it was successful in lengthening my Achilles Tendon. The casts didn’t hurt; it was just annoying to wear them and to have weekly appointments for months on end.
The second time I had serial casting, I was 16 years old and I had been having pain in my feet with standing. This time the casts helped a bit, but they hurt a lot. My bones had shifted over the years, and casting could only address the muscle and tendon issues. After the casting, I had bone surgery on both feet.

Surgeries:
My experience with surgery (my own and my friends) is that it’s ALWAYS harder than what the surgeon says. Based on my personal experience and that of my friends and acquaintances, I would work and do work very hard to avoid a bone surgery.

I had muscle lengthening surgery when I was 6 years old on my adductor muscles. (These muscles were tight from all the tone pulling my legs into crossing.) Physically, this surgery wasn’t that tough, but I did an intensive physical therapy program afterwards to help me retrain how I used my legs. It all felt time consuming to me, but I know it was very helpful. I made a great deal of progress being able to stand without crossing my legs.

I had my second surgery when I was 16 years old. As I said, my feet were hurting and it was getting hard to put weight on them. This was a major event – rearranging the bones of my feet. It was extremely difficult with long-term pain and an increase in horrible back and leg spasms. I would say it was about a year before the painful spasms of my legs and back reduced back to the pre-surgery level. I went to a pain management clinic for help with the pain, and that was helpful.

Now, I see a major, major benefit of bodywork as avoiding bone surgery – it is so painful, affects the whole body, and takes so much time out of your life. It's mentally very exhausting. (I recall some school aged kids with CP having a major surgery every summer. Yuk!) I would do a lot of bodywork to avoid bone surgery! I've also learned that surgery only straightens out the bone, it doesn't change the CP. So, after the surgery, the CP is still causing the problem that led you to the surgery in the first place.

Also, I wore an eye patch for several months and had 2 surgeries for strabismus (eye muscles).

Respiratory
I had lots of respiratory infections as a baby and young child. They were very debilitating. This changed after about age 7 – I worked with Mary Massery on respiratory exercises. She taught me to take a deep breath, hold it, and then cough. My parents also learned some respiratory physical therapy techniques that were helpful in preventing a cold from turning into a full blown respiratory illness. I also started singing in a choir about that time. My respiratory problems dramatically decreased as my diaphragm got stronger. Now, I still sing, and I know that that is really helpful to my body. Plus, unlike other bodywork, it's fun!

GI
CP affects my GI tract big time. I’ve had trouble with weight gain, severe reflux and vomiting, and constipation. There have been no “magic pills” to solve these problems, but with some effort they are managed to the point of being livable. The severe reflux is one problem I’d really like to get rid of.

Stamina issues
I tire very easily, both mentally and physically. Sitting well, standing well take a lot of cognitive work. My low stamina is a big frustration for me. I need a lot of rest each day. If I don't get it, I really pay the price with increased pain and tightness.

Tone/Spasticity
For me, the high tone itself is somewhat painful. It's more limiting than painful, because I can't move so well and I don't feel like I have good control over my body when it's tight. The effect of the spasticity on my hips and back can be painful - the constant pull (to cross my legs) on my hip can be painful in my hip. I've found heat to be very helpful in reducing both the spasticity and the discomfort. I like to keep my legs warm. I use little heating inserts in my AFOs, and when I am lying prone, I often have a heating pad across my butt or legs. A warm bath also relaxes the tightness. Being cold and shivering increases the tightness. Positioning my legs in a way that separates them while simultaneously applying heat helps. Also, actively using the spasming muscles helps to decrease the spasms; if I stand well and actively use my gluteal and leg muscles, the spasms decrease. But, that's hard - it takes a lot of cognitive work to get it right.

A problem with pain that can be overlooked is that pain, even mild pain, is distracting. It takes my attention away from focusing fully on something else. And that is sometimes a problem, more so than the actual discomfort of the pain.

Technology
Technology is so very important for kids with cerebral palsy. I cannot handwrite at all, but I can use my computer to send emails, write papers, etc. My Permobil wheelchair lets me change my position on my own - sitting, standing and lying down. Without the Permobil chair, I'd have pressure sores, a lot more pain, and much less function.

School
This is a big issue. I've written a little about my school experiences here and here. Between my sisters and me, we've tried full-time public school, part-time public school, full and part-time private school, and homeschooling. We did different things at different times. My parents came to view the school system as one tool of many in their toolbox. They learned that it wasn't always in my best interest to do things a certain way, just because things had always been done that way. I've found the low expectations and the challenges of finding capable assistants to be the biggest hurdles in the school system. Interestingly, and wonderfully, I am finding college easier to navigate than k - 12.
I think that it is extremely important to not have one's time filled with bodywork and schoolwork and no time for fun. That's part of the tricky balancing act that families have to figure out.

Pursuing strengths
I see it as so very important for kids with CP to pursue their strengths. It is very easy to focus on everything that needs improvement. But, for me, my strengths are what helped me fit in with other kids, what gave me confidence, what gave me fun, and what now may help me to be employed or have fun as an adult. I am so glad that my parents helped me to have singing lessons and choir experiences. I am glad I didn't focus on handwriting in elementary school. It was a good decision to take higher level Spanish classes in highschool and skip some math classes; my strengths are auditory and my learning disability is visual.

Parents/Making decisions
There are things I wish my parents had done differently. For example, I wish I had homeschooled more in elementary school. I think it would have been less stressful to me, and more efficient for my time. I think school took up too much of my time, particularly when the way things were done didn't match my learning needs and simply wasted my energy. I wish my parents had intervened sooner with one of my problem school aides. And, I wonder how life would have been with less therapy time. There were plenty of times that I hated going to therapy.

I am very grateful that my parents were able to go against the culture or the "way things were always done". I am so glad they were strong advocates for me. They tell me that they learned that over time. They didn't start out that way.

I also now appreciate how very difficult decisions for me really were. As I have taken over more and more responsibility for these decisions, I realize that there are not easy answers. My parents did the best they could. And, I have learned from them to not dwell on the mistakes or the things I wish I had done differently, but to keep learning and move on. I think if my parents were wracked with guilt and fear about making mistakes, I'd pick up that attitude also. And that attitude could paralyze future decision making.

This post was a joint effort with my mom. I hope it is helpful to parents. Again, these are my personal experiences; everybody is different. Let me know if you have any other questions.

So, my summary points - love your child, promote strengths, do the best you can with the complicated decisions, think "outside the box", and don't be too hard on yourself.

It's very important that we all work to change society so that those of us with cerebral palsy can be full members. Support the ADA Restoration Act, model inclusive attitudes and advocate for a better world.

UPDATE: My parents and I continue to think of many other things that could be helpful to a family with a young child. Here are a couple more.
-During the years when I rebelled against formal therapy, (in addition to meshing the work into my day like I described above), my parents tried to make therapy fun. I had books read to me or played guessing games or various things to help me "enjoy" the time more. It didn't really work, but it did help. Also, when I was about 4 years old, something that worked was a "reward" for "working hard" in therapy. I got to do an art project that was only done after a session during which I cooperated (so the reward was not based on "what" I did, but just that I gave a reasonable effort). My mom had a stash of paper plates that I decorated with glitter, paint, felt, whatever, and then she put them on display on the wall. Whenever someone came over, they would ask (with some prompting by my parents) about all the art on the wall. I would feel proud of my accomplishments. My parents never wanted to punish me for not cooperating with something that was inherently unpleasant, so they just used rewards or lack of rewards. And, I did get a time out if I would bite the therapist or do something really nasty. ; ) No art project on those days!
But, I do think the best way to work on my body was just having it be part of my day.
-Also, my parents came to learn that no "expert", in health care or education, was more expert than they were. They used "experts" like consultants, weighing what they would say against their own experience with me and against their gut feel. (And, by the way, they didn't get the hang of this until after they were misled a few times.) They also learned to be very creative as they weighed different choices, starting with what their goals were for me and then deciding how to use others' advice.

Disability and God

2008-02-04T15:18:00.000-06:00

Check out Ruth's post, "Disabling Theologies: Having a disability is not a punishment from God." Nor do I believe that having a disability gives one a special "in" with God. Disability, like ethnicity and gender, is simply part of the diversity of humanity.

"Bob's House"

2008-02-04T14:03:00.000-06:00

If you missed the Super Bowl yesterday, here's a link to the Pepsi commercial which highlights a popular joke from the deaf culture and also an interview with the Pepsi worker who stars in the commercial. Here's a Pepsi link showing the making of the commercial. Enjoy! It's a fun commercial and highlights the commonalities and diversity of people.

Steak 'n Shake apology

2008-01-31T13:08:00.000-06:00

"We believe in admitting when we make mistakes and learning from them."

I blogged about the lack of service that Karen received at the Steak 'n Shake drive-thru because of her deafness. You can read here about Karen's meeting with representatives with Steak 'n Shake.

If you read through Karen's posts on this incident (and the resulting comments), you can see just how many people have a hard time believing that this type of discrimination exists.

Inclusive Travel

2008-01-31T11:57:00.000-06:00

If you've never checked out Scott Rains' blog, you are missing out. It's full of information, links, and stories about travel and disability.

Scott just found out that his proposal to create three Centers of Excellence in Inclusive Tourism in strategic locations around the world was accepted by the Echoing Green Foundation for the second of three rounds of the 2008 competition.

Here's what it involves:

"Each Center of Excellence will participate in international work to:

* Standardize the diversity of accessibility laws,
* Disseminate minimum accessibility guidelines for hotels,
* Train travel & hospitality industry staff,
* Promote the education & hiring of People with disabilities (PwDs) in the industry.

At the local level centers will work to make themselves accessible
destinations and establish a core of PwDs to be self-sustaining as advocates & experts in Inclusive Tourism for their region."

Congratulations, Scott! And, thank you.

Support the ADA Restoration Act

2008-01-30T15:51:00.000-06:00

H.R. 3195 ADA Restoration Act was introduced in July, 2007 to "restore the intent and protections of the Americans with Disabilities Act of 1990." A hearing was held yesterday to discuss this bill.

This is critically important legislation, because lately more and more employees are being barred from protection by the ADA. You may remember this story about the pharmacist who was fired because of his diabetes. His employer, Walmart, denied him a 30 minute lunch break. Thirty minutes needed to eat his lunch and keep his blood sugar regulated. When the pharmacist sued, a judge threw out his lawsuit, because the judge did not consider him disabled since he took insulin and therefore deemed him not qualified for protection from the Americans with Disabilities Act.

Representative Steny Hoyer, who worked on the original bill in 1990 says that the Congress never intended to disqualify people from protection from discrimination because they were taking medication that improved their condition.

Employment is a huge, huge issue for people with disabilities. Without employment, how do we live independently, support ourselves, buy food and shelter, live a life? Without employment, we are relegated to relying on charity and government services, which just cannot be an economically sound way to run a country. Without employment, it's tough to share our perspectives, our talents.

Steve Kuusisto has a very informative analysis of the proposed modifications to the law. I urge you to read his entire post because it really clarifies the issues. He quotes Scott Lissner, a university ADA coordinator:

"This would clearly widen the scope of who is protected from discrimination (exclusionary practices and prejudicial practices resulting in differential treatment) but would not directly expand who is entitled to an accommodation. Though it is possible if fewer students, employees and program participants with disabilities are excluded there may be some increase in the accommodations provided.

The second critical change puts the ADA in sync with other civil rights legislation by moving from protecting only qualified individuals with disabilities from discrimination to protecting all individuals from disability based discrimination."

Here's what the American Civil Liberties Union's press release has to say about this important legislation:

The American Civil Liberties Union today applauded the House Committee on Education and Labor for holding a hearing on H.R. 3195, the Americans with Disabilities (ADA) Restoration Act.
The original ADA passed with overwhelming bipartisan support in 1990 and was heralded by Republican and Democratic leaders as the "emancipation proclamation" for people with disabilities. However, due to a series of Supreme Court decisions that have narrowed the definition of disability under the ADA, the vast majority of ADA cases brought against private employers have been dismissed by the courts.

The ADA Restoration Act restores the original intent of the ADA by clarifying that anyone with an impairment, regardless of his or her successful use of treatments to manage the impairment, is entitled to seek a reasonable accommodation in the workplace.

Specifically, this legislation:
amends the definition of disability so that individuals whom Congress originally intended to protect from discrimination are covered under the ADA;
prevents the courts from considering the use of treatment or other accommodations when deciding whether an individual qualifies for protection under the ADA; and
focuses on whether individuals can demonstrate they were treated less favorably on the basis of disability.

The following can be attributed to ACLU Legislative Counsel Joanne Lin: "It is time to fix the problems created by the Supreme Court. The ADA Restoration Act would reestablish Congress' original intent in passing the ADA and restore the Act to its place as one of our country's great civil rights laws."

There are 243 cosponsors of the ADA Restoration Act. But, there is considerable opposition. Some say that the ADA Restoration Act will allow everyone to claim a disability, encourage "cheaters", and the expense to business will be overwhelming. I don't buy it. As stated above, the ADA is being chipped away to not cover those who need it. And the reason is not concern that for cheaters. And, most accommodations cost very little to the employer, while adding greatly to the employer's bottom line to have a productive employee.

These statistics from a talk by attorney Howard Rosenblum of Equip for Equality, bear repeating:

20% of reasonable accommodations cost nothing.

Over 70% cost $500 or less.

The median cost is $250.

A company makes $35 for each $1 spent on reasonable accommodations. Some of the benefits include hiring and retaining a qualified employee, increased productivity, and decreased turnover costs.

Certainly a lunch break for the Walmart pharmacist is not a costly accommodation.

This bill has bipartisan support in the House, but Senate support is not clear. Please contact your Representatives and Senators to support this important civil rights legislation.

Regular updates on the progress of the ADA Restoration Act can be found at: The American Association of People with Disabilities blog and at Reunify Gally and The Road to Freedom.

Questions about cerebral palsy

2008-01-30T14:39:00.000-06:00

I have been working on a post about my cerebral palsy. I haven't written so much about that topic because I had originally intended my blog to be about my interviews with people with disabilities and the societal issues of disability.

But, after reading Kathryn's recent post, and Billie's blog and Jacqui's blog and others, I think that maybe some information about how CP is for me could be helpful.

So, parents of young children with cerebral palsy, do you have a question you'd like me (or maybe my mom) to address about my CP now or when I was younger? If so, leave a comment here.

Costa Rica, anyone?

2008-01-25T15:18:00.000-06:00

Last summer, I participated in an incredible program with Mobility International USA. (Here's my slideshow.) I joined several other young people interested in disability rights and traveled to Costa Rica - living with a host family, doing some volunteer work, visiting disability and tourist sites, meeting with Costa Rican disability activists, and sharing in a cross-cultural exchange. It was an intense, hard, wonderful, incredible experience. I met fascinating people and did things I'd never done before.

MIUSA is recruiting for this summer's trip. And, it's back to Costa Rica! If you or someone you know is 18 - 24 years old and interested in disability advocacy, be sure to apply. The deadline is March 28. All the details at the MIUSA website, including a great slideshow of our trip last summer.

Update on the Steak 'n Shake Discrimination

2008-01-25T15:08:00.000-06:00

Yesterday, I linked to Karen's story of being denied service at her local Steak 'n Shake because she couldn't use the speaker box.

Here's an update: Karen says that she's received a response from Steak 'n Shake corporate headquarters and will be meeting with their representative. She is not looking for any remuneration (money or shakes!) - just an apology and appropriate customer service for patrons with disabilities.

Last night, the story was covered on ABC News and Fox News. I thought the coverage was good - not patronizing at all. Unfortunately, the videolinks are not captioned, so Karen and others who are deaf cannot hear the coverage via the computer.

It's good to see change happen.

Carnival Day!

2008-01-24T14:05:00.000-06:00

The 29th Disability Blog Carnival is up at RynTales. It's filled with thoughts on what health care providers, educators, waiters and others need to hear about their clients. Great stuff!

Another story illustrating why we need the ADA

2008-01-24T13:09:00.000-06:00

Yesterday afternoon, Karen, who blogs at A Deaf Mom's Shares Her World, wanted to order shakes for herself and her son. Karen is deaf and cannot place a drive-thru order via the speaker. She needs a real person with whom she can lipread and speak. Doesn't sound too tough, does it? She drove up to the payment window at Steak and Shake to place her order, and was refused service, even threatened by the server with calling the police because she was "disrupting business."

Last summer, a woman with underdeveloped arms and hands who uses her feet to do the work of her hands, was refused service for herself and four children at McDonald's because the employee was disgusted when she gave him her credit card with her foot.

I've heard some people say that we don't really need the Americans with Disabilities Act because,

C'mon, people are reasonable.
Why get the government in the middle of it?
It will cause more trouble than it's worth.

And, again -

People are reasonable, we can work things out ourselves.

Nope. Not true.

Reasonable people will stop their car when the school bus stops in front of them to let kids off, even if the kids aren't crossing the street. But, we have a law. Why? For the safety of our children, and because, frankly, some people aren't so reasonable when they are in a rush or in a foul mood or just don't feel like stopping.

So many, many times when I try to do something - sing in a play, go on a school field trip, enter a restaurant, I hear,

We can't...
We don't....
You can't...
Sorry, it just won't work.
I know there's the ADA and all, but...
Go away.

The ADA is needed so that people can have shelter, work, shop for groceries and other necessities, get healthcare, take public transportation, etc, etc. Important daily functions, and recreation as well.

Incidently, money isn't really the issue here. As is so often the case, accommodations are not necessarily costly. They simply require a little thought, a little effort, or a little creativity.

A few suburbs over from the Karen's Steak and Shake is a Culver's Restaurant who, a few years ago, installed a bell at their drive-thru speaker.

"The customer pulls up and simply rings the bell...The staff now knows that the person out here is struggling with the speaker and then they pull forward and then they are handed a pen, paper and a to go menu."

(This accommodation and others similar to it are designed by a Chicago company, Inclusion Solutions.)

We need the ADA and we need the ADA Restoration Act to keep the teeth in the law.

We can't count on people being "reasonable".

More on the JRC and Aversives

2008-01-18T19:00:00.000-06:00

Thanks to Andrea the hat tip on an update on the Judge Rotenberg Center and its use of aversives.

In December, the Boston Globe reported that a call was made in the middle of the night to the JRC and the staff was told to wake 2 boys up and administer shocks. Here's what is reported:

"The staffers, inexperienced and overworked, were described as concerned and reluctant, yet nobody verified the orders with central office, nor did anybody check treatment plans for the two teenagers to be sure they were permitted to receive that degree of shock therapy."

And

"In addition, the report said staff at the Stoughton house did not know who the shift supervisor was that night; the senior staffer did nothing to intervene. By the time a call was finally placed to the central office and staff members realized their mistake, one teenager had received 77 shocks, well in excess of what his treatment plan allowed, and the other received 29. One boy was taken to the hospital for treatment of two first-degree burns."

So, a prank call in the middle of the night resulted in the torment of 2 teens. Can you imagine?! (More discussion of that night over at The Gimp Parade.)

Today's news, reported in the Boston Globe, relates the investigation into this horrible incident. An investigator from the Disabled Persons Protection Commission viewed a videotape of the night (the JRC apparently regularly tapes the residents) and instructed the JRC to save the videotape for the state troopers. But, the tapes were destroyed.

"The disclosure about the tapes occurs as the Disabled Persons Protection Commission is preparing for a public release of its findings Tuesday. Its report concludes that one of the teenage students was severely physically and emotionally abused by the incident. The commission has referred the case to the Norfolk district attorney's office."

Tragic. Horrible. Incredible.

As Andrea says, one sees a connection between this loss of videotapes with waterboarding and Watergate.

Blogging Against Aversives

2008-01-14T17:27:00.000-06:00

Is it OK to teach a child “appropriate behavior” with these types of punishment – ammonia sprayed up the nose, water shot in the face, forced to eat jalapeno peppers, or electric shock? You’d probably say NO WAY!

But what if the child has severe behavior problems, say swears excessively, bangs her head against the wall, bites himself or others, or is otherwise violent towards himself? How bad would a behavior have to be to warrant such violence towards the child? And who decides?

Some people advocate that there are children who are so difficult that they warrant these extreme consequences. Here’s a New York Times article from 1997 discussing one family’s experience with a school, now called the Judge Rotenberg Center, that administered the consequences listed above. Here is the 1999 obituary of the same young man, who, after his parents pulled him out of the school, later lived successfully with support in an independent living center, but died from infections resulting from harming himself.

A yearlong investigation of the Judge Rotenberg Center is documented in School of Shock: Inside the taxpayer-funded program that treats American kids like enemy combatants and is a must read. It has resulted in hearings to look into the school and the regulation of aversive conditioning.

So, back to the question – is it sometimes OK to do horrible things to children? If the situation is really dire? Is it OK to hurt a child if it stops a bigger hurt? I say no. We need resources, funding, research, respect and real support for these children and their families. Support and help that starts at a very young age.

Not violence. Never violence. There must a better way. These human beings deserve a better way.

For much more on this topic, check out the links at Uppity Disability.

Personal experience with aversive treatment from Amanda at Ballastexistenz. Heartwrenching to read. Thanks to Kay for the link.

UPDATE: I am turning off comments on this post. I do not have time to moderate a respectful discussion, and I do not want to risk having the comments deteriorate into meanness or nonsense that takes attention away from this serious issue.

Brent Martin, Rest in Peace

2008-01-13T12:41:00.000-06:00

Please read about the tragic murder of Brent Martin, a gentle young man in the U.K. bullied and beaten to death by three teenagers simply because of his disability. A hate crime that happened last August and is just making the news now. Why wasn't this a top story? Other hate crimes are reviled by all.

Some links: Adrien Pearson, The Journal. Two admit murdering Brent Martin for sport
Pipecleaner Dreams, RIP Brent Martin
Dave Hingsburger, Black Armband

Carnival #28!

2008-01-10T08:38:00.000-06:00

Photo description from Connie at [with]TV: woman, wearing glasses, reading the newspaper. Her mouth is wide-open as if yelling something; she appears to be appalled, offended, dumbfounded, angry - who knows - but it doesn't look good what ever it is.

Disability in the Media is the theme of the awesome carnival up now at [with]TV. Connie Kuusisto has put together an incredible collection of stories, reflections, videos on the subject - including the Ransom Notes campaign, a Nike ad, Oprah, Dr Phil, and a myriad of others. Much to see in the reflections and insights of so many bloggers. I hope you'll head on over.

"The Argument Against Lifeboats"

2008-01-04T13:44:00.000-06:00

Steve Kuusisto of Planet of the Blind makes a very interesting comparison of the opposition to the Americans with Disabilities Act and the ADA Restoration Act with the problem of an inadequate number of lifeboats on the Titanic. Check it out!

Year in Review: Reflections on the Ashley Treatment and Other Memorable Posts

2007-12-31T19:09:00.000-06:00

When I planned to take a year to interview people about growing up with a disability, the blogging was an afterthought. It was a way to share the interviews and some of my thoughts. 2007 didn't quite go as I expected, project-wise and blog-wise, and there was so much learning that I didn't anticipate.

In January of 2007, I heard about the "Ashley Treatment" - the so-called treatment being a hysterectomy, breast removal, and high-dose hormones to suppress the growth of a 6 year old girl with cerebral palsy. I didn't think I was naive - I have a loving home, but knew very well that many in the world don't. I've had my own negative experiences with societal institutions - healthcare and education, in particular. I have experienced ableism - discrimination based on ability. I had read about the civil rights movement, listened to black friends talk about racism, listened to women talk about sexism. But, blogging about the Ashley Treatment was a turning point for me. I just did not realize that so many, many people could think that what happened to that little girl was ok. Some people I care about thought it was OK. Some people I didn't even know thought they could say cruel and hateful things to me, because I spoke for this child's rights.

So, I guess I was naive.

A flood of emotions and thoughts come out of that experience. What is it with this world that we cannot recognize humanity in each other?

I realize how little the able-bodied community understands about living with a disability. They see us as less than they are, often as disposable, and they feel sorry for our caregivers. Our cultural institutions don't support us, and the media misrepresents us or worse.

Now I see many more injustices in the world. And I'm sure that there are many more that I don't see. So many people in the world are seen as "less than", as disposable.

And sometimes I see injustice where there is none. This reminds me of an episode of the TV show House, where Dr. House, who has a leg impairment, sees Christmas candy canes, and says, "Candy Canes! Are you mocking me?" Except in real life it's not so funny.

It's hard not to feel cynical, frustrated, and hopeless. (Check out Cripchick's recent posting on society's reactions to another young child with cerebral palsy. It's tempting to withdraw and pull myself out of all of this stress. Why put myself through the hardship of living in a broken society, a society where many members are not accepted for who they are?

But, I won't withdraw. I am not going to let others define me. This is my world, too. And, I want change. Actually, I want change now, and I feel impatient. (Some days I really don't want to be spending my time in school. My stamina is limited, my health needs take time, and I feel a restlessness spending my productive energy on schoolwork. I'd like to have time to pay more attention to what's happening outside of my life and outside of the classroom. I'd like to get back to interviewing.)

I have, as well, developed a renewed sense of appreciation for activists of all stripes both now and throughout history.

So blogging about the Ashley Treatment changed me.

A few other posts from 2007 that have a strong meaning for me:

1. A Day at Work. In this post I share the typical work day of Chris, a mail clerk at Rotary International. I am very proud of this post. It’s about a man who works hard and loves his job, and the fact that he has a disability is irrelevant. Every workplace should have workers like Chris. If the media, educational facilities, health care institutions, airlines, and the government had workers as conscientious and dedicated as Chris, my life and the lives of others would be impacted immeasurably.

2. Sandbox Lessons. This is the post I wrote for Blogging Against Disablism Day 2007, a post that shares a story from my childhood about how children become ableist.

3. My Costa Rica Experience: A Slideshow and Reflections. My trip to Costa Rica was an amazing experience and I am so grateful to Mobility International USA; Ryan my personal assistant; Eduardo, Marianela, and Maripaz, my host family; and my family and friends who supported me for this wonderful opportunity to learn a little about life in Costa Rica and to learn a lot about me.
4. Understanding the Less Common Perspective. So many people have difficulty understanding my perspective and life experiences living with a disability. This post shared an essay I wrote about my educational experiences for my English class.

My next semester starts in a couple of weeks. Taking 2 classes at a time fills my time. I hope to blog when I can.

I wish you and yours a safe and blessed New Year. All the best in 2008!

Carnival time!

2007-12-13T17:42:00.000-06:00

A Few of Our Favorite Things, the 27th Disability Blog Carnival, is up at Andrea's Buzzing About. Here's what Andrea says, "We all have a number of little things that not only delight us in small ways, but also make life just so much more pleasant, and even help reduce our stress loads. These tend to fall into three categories: technology that enables us to do things, creature comforts, and human interaction. Got your cuppa? Cats and dogs settled down? Then let’s begin!"

I think I'll take a break from end of the semester papers and do just that!

22!

2007-11-30T19:00:00.000-06:00

Twenty two years ago (tomorrow) I was born. Here's a picture of me and my sisters at 24 days old on Christmas day, 1985. Can you guess which one is me? (a little take-off from Kay's guessing game post).

If that was too hard, here's a picture from 7 months later where clothing gives a clue:

(Hmm...why did my parents save this particular photo?)

PS - No guessing, sisters! Happy birthday to you, too!

Disability as Culture

2007-11-28T11:26:00.000-06:00

Check out Cross-Cultural Communiques from Andrea’s Buzzing About. When I was writing an essay about my educational experiences for my English class, I noted the tremendous difficulty that able-bodied people had in understanding my experiences when they were so different than their own. Andrea broadens the discussion to look at cross-cultural relationships. She shares a list by an unknown author designed to address "…the assumptions we mentally trip over when working with people from other national, religious or ethnic cultures." Andrea notes, "I rather doubt that the author(s) considered how broad the cultural spectrum can be."

The first one on the list is "What seems to be logical, sensible, important, and reasonable to a person in one culture may seem stupid, irrational, and unimportant to an outsider." All twelve make you think.

Understanding the less common perspective: A Thanksgiving reflection

2007-11-21T17:02:00.000-06:00

This semester in my English course, my classmates and I were asked to write an essay about education. I decided to write about my childhood educational experiences because I thought they needed to be heard. When my English teacher and my classmates read my rough drafts, they did not readily grasp the main points that I was making and they totally missed some of the subtler points. Granted, they were unpolished drafts, but the reality was that my childhood educational experience may have taken place on another planet for all that they could relate to it. I ended up making many changes to the paper, changing words and fleshing out concepts so that my classmates could better understand the school experiences that I and many other children with disabilities had. To focus on a more basic message I ended up leaving out some of the complexities, for example: juggling health needs and school; countercultural decisions that my parents and I made in an attempt to counter the mainstream paradigm; and my atypical high school choices.

My experience with this essay left me thinking. How do you best convey experiences of living with a disability that are so alien to so many people? Where do you start? How do you convey challenges that people have never even considered? (Kay and Ruth recently shared recent experiences that most people couldn’t even fathom.) How can people relate to you and support you when they are so unfamiliar with your experience? I realized after I wrote my paper how grateful I am to have the support of the blogging community, many of whom share personally their own journeys through different, unfamiliar, and exotic lands. I'm so grateful that I have people that know what I'm talking about and are not surprised when I bring up certain issues in my life. Psychologically, it's really helpful to realize that there are, in fact, a large number of people who have atypical life experiences and that we can and do support and encourage each other. This experience of trying to convey my world to people who could not easily envision it led me to an even greater appreciation for Amanda Baggs and her tireless efforts to share her perspective in a society that lives under such a different paradigm.

So on this Thanksgiving, I thank you fellow bloggers. I thank you for all you've taught me and all you've done to support me. I thank you for listening to my perspective and enriching me with yours. And I thank you readers for making the effort to understand my perspective.

Here’s the final version of my English essay:

“We hold these truths to be self evident, that all men are created equal, that they are endowed by their Creator with certain unalienable rights, that among these rights are Life, Liberty, and the pursuit of Happiness.” Familiar words to all Americans; and within these words, most Americans see the value of education, believing that public education is a key component of the individual pursuit of “Happiness”, a full and rewarding life. And likely, most of us agree with Thomas Jefferson’s 1806 assertion in his 6th Annual Message that the country as well as the individual is improved when its citizens are educated, that the benefit of education is not just to the individual, but also to the entire society, which is strengthened and enriched by educated members.

One group of Americans left out of this fundamental right is children with medical conditions or learning differences. The current educational system is designed for the student who can sit at a desk for several hours at a time; learn visually from the written word; follow directions quickly, easily, and compliantly; and conform and cooperate with the demands of a system based on multiple choice testing as the means of assessing progress. The American educational system is a one-size-fits-all structure that doesn’t fit the large number of students that are unable conform to it.

So what happens to these children who don’t fit the system? The children who can’t sit still, the children who learn best from hearing rather than seeing? The children who have difficulty understanding directions? The children who can’t write for themselves? The children who learn best with movement and physical stimulation? The children who are slower or faster in learning a skill than their same-aged peers?

These children are disrespected and left along the wayside. They are labeled - “different”, “uncooperative”, “special”, “hyperactive”, “slow”, to name a few. Expectations for these children are lowered, dramatically lowered. In our society, there are two ways of educating children with learning differences: in a classroom exclusively for children with disabilities or within a classroom with same-aged peers. Because of the pervasive disrespect and low expectations for these children, neither setting is designed for success. Often the curriculum is weak, the support non-existent or poor, the staff undertrained, and the resulting social isolation is vast.

Having cerebral palsy, I was one of the children labeled “different”. I have traveled through a dark side of public education that may surprise, and would hopefully appall, many Americans. Over the last year, I have interviewed young adults with disabilities from many school systems who have shared similar dark educational journeys.

Ironically, my very first school experience was an ideal experience, a model for the education of young children. My parents had refused to let me, as a 3 year old preschooler, travel 1 ½ hours each way by bus to be isolated in a building that only had students with physical weaknesses like mine. They recognized that while my physical abilities were quite limited, my language skills, love of music, interest in books, and desire to learn were age appropriate. Luckily, a local preschool teacher invited me into her classroom for the second half of the schoolyear, while a neighbor physically lifted me and supported my full participation. Not until much later would my parents and I realize that this ideal educational experience based on high expectations, respect for me and my learning style, and full membership amongst my peers was a fortuitous rarity that would not be easily replicated in my grade school years.

In grade school, my parents pushed for me to be in a classroom with my same-aged peers, but like other children with disabilities in the regular classroom, it was a forced fit. The biggest hurdle that I faced every single day was the hurdle of low expectations. Many staff took one look at me and made assumptions that I couldn’t learn, that it would be a chore to teach me, that it didn’t really matter if I learned, and that I was not now nor ever going to be a contributing member of the classroom or society. I felt these low expectations when teachers didn’t expect me to have an answer and would not call on me in class, when an inaccessible location was chosen for a field trip and it was okay if I didn’t go, when it was acceptable that my schoolbook audiotapes were not available at the start of a unit, and when my large print copies were not ready on time.

My stories are echoed in the stories of the people I have interviewed. Whether in a disability classroom or a same-aged classroom, each person experienced the trauma of low expectations. Students in disability classrooms noted that academics were not considered a priority, that they did not have homework, and that their schoolday was full of wasted time. Students in the same-aged classroom recall the discomfort of the forced fit into that classroom – the medications to allow them to sit still, the assumptions that they were faking their need for extended time or personalized directions, having to learn math with worksheets rather than by handling concrete objects. A woman who is blind recounted the terror of never knowing when she would be hit by a basketball in gym class. (The sound of a basketball still makes her cringe some 20 years later.) Whatever their classroom, most can still replicate the baby-talk voices of staff members. Students who took the “special bus” recalled that no educator seemed to care that each day they would miss academic instruction due to a late arrival and early dismissal designed to make the bus driver’s schedule easier.

For many, a seismic manifestation of the disservice of low expectations came in the form of teachers’ assistants. Assistants to support students with disabilities in the classroom sounds, in theory, like a good idea. Reality often shows otherwise. Using a wheelchair, being unable to handwrite, and being a weak visual learner, I was assigned an assistant to support me throughout grade school. More often than not, this was a person who had no more than a high school education and was in this very low paying job temporarily until a better job came along. Typically, my assistant had little to no understanding of child development and placed no value on his or her own education. Yet, these people were placed in charge of my day-to-day learning, while the classroom teachers looked after the needs of the other 25 students. I had a few positive assistant experiences, but many more negative ones, including an assistant who was absent 50% of the time; an assistant who wrote “Abe” rather than “Abraham” in my dictated story about President Lincoln because she could not spell “Abraham” and did not think of using a dictionary or asking the teacher; an assistant who would take me with her while she socialized with the janitors; several assistants who did not know school policies or equipment; an assistant who forgot to put my seatbelt on, then tried to push my wheelchair forward down the stairs (fortunately stopped by the scream of my observing mother); assistants who brought their own troubles and stress to the workplace and my day; and an assistant who swore at me and abandoned me in the bathroom because he didn’t like my attitude.

Like me, others interviewed told of low expectations manifest through the revolving door of incapable and, occasionally, even abusive, assistants. A number of people recalled that recess was nothing more than a time for assistants to gather, students at their side, for a chatting break while all the other kids played. Former students spoke of the high absenteeism rate for assistants, and of assistants who yelled at and scolded them. One man shared that an assistant kissed him in the seclusion of an elevator.

When so many actions of the educational system send the message that you have little potential, it’s hard for a child not to internalize and fulfill those low expectations. The public educational system wreaks havoc on the feelings of self-worth of the child with a disability. Every person that I have interviewed speaks of childhood memories of intense isolation, deep rooted feelings of inferiority, and an assault on their self-esteem. For many, the scars take years to eradicate, and can resurface when confronted by constructive criticism, snide comments, a rude look, or any challenging situation. Changing from a “you can’t do that” mentality to an adult “I can do that” attitude requires great effort.

Children model adult behavior, and the plague of low expectations spreads to little ones without disabilities as well. These children have been exposed day after to day to a system that treats a group of their peers as inferior, and they naturally come to accept that perspective. In addition, if there is segregation of the two groups of students within the school, there is limited opportunity to get to know each other and break down the stereotypes. Children could have the opportunity to form friendships in extracurricular activities, but sadly this doesn’t happen very often. Children with disabilities are only able to partake in activities with leaders willing to accommodate their differences, which are not necessarily activities for which they have a natural affinity or a genuine interest.

Consequently, many children with disabilities never experience solid friendships with their able-bodied peers. By the teenage years, many schools aggravate this problem by setting up well-intentioned service opportunities for their able bodied students, pairing them with students with disabilities for social activities. What I have seen repeatedly is that the able-bodied student sees a short term charitable project, albeit a fun one, while the student with a disability, lacking experience with relationships, believes he or she has formed a real, lasting friendship. This disconnect often is never fully realized by either side, and down the road leads to confusion, hurt feelings, and sometimes hostility, exacerbating the divide between the two groups.

It can be seen, then, that the child with a disability loses out on academic instruction and therefore academic potential, self-esteem, and relationships. But, others suffer too. Able-bodied children lose the opportunity to be exposed to peers who have a different perspective on some life issues, and society loses the opportunity to fully experience the talents and contributions of this suppressed group of people.

The current system, defined by low expectations for students with disabilities doesn’t work. What is needed is an educational system that accepts all aspects of diversity, including diversity of ability. What is needed is a school system that truly respects each individual child and supports all children to become full members of a diverse society that benefits from the full education of each of its members. There is not some precise line dividing the ability from disability. Every child, and for that matter every person, has abilities along a continuum. In addition, each child has individual strengths and weaknesses. Priorities should be set so that not only can weaknesses be improved, but strengths, interests, and passions can flourish.

Class sizes need to be smaller, so that teachers can get to know each student and his or her unique needs. Lessons should be offered in many formats – visual, auditory, kinesthetic, creative role playing, tactile, and experiential. Each format needs to be considered to be of equal merit, deserving of high quality materials that are ready in a timely fashion. The ideal classroom would be reflective of the ideal society, having diversity represented among the staff as well as the children. Diversity of ability should be prized in teachers, as enriching the educational process and society. A teacher with a kinesthetic learning style, one who might have been labeled as uncooperative and wiggly in first grade, would be a valued member of a team with teachers of other learning styles.

This truly respectful environment would foster self-worth, confidence, and a joy and love of learning. In a school with respect for individuality and diversity of ability, natural peer relationships and friendships would develop without the barriers of artificial superiority or inferiority. Children would grow up to offer their self-confidence and varying talents to create a just, diverse society enriched as Jefferson imagined through the foundation of a strong public education system.

26th Blog Carnival

2007-11-08T14:44:00.001-06:00

How do you relax or unwind? That's the question over at the latest Disability Blog Carnival up now by Greg at Pitt Rehab. Lots of great posts. Check it out!

Dave's Faves 2

2007-10-28T16:41:00.000-05:00

Three very different links:

A horse for a service animal? Interesting.

Ruth’s back-up aide didn’t show up. She offers this prayer. I hope today is a better day for you, Ruth.

A pharmacist is fired by Walmart because of his diabetes. This is why we need the ADA Restoration Act.

Carnival #25!

2007-10-25T00:49:00.001-05:00

Kara Sheridan has the 25th Disability Blog Carnival up at her blog, "If the World Had Wheels."

The carnival is an assortment of posts on the wide-open theme of "If...." Looks like lots of creative responses - I hope you'll check them out!

Imagine a world without celebrity gossip

2007-10-23T15:25:00.000-05:00

If we spent less time talking about Britney Spears ……

*The dramatic fall in gossip would lead to a gigantic reduction in carbon dioxide emissions, and global warming would slow.

*The media would have to find something else to fill their magazines, websites, and talkshows – say the Iraq War? Crises in Darfur and Somalia? Healthcare for children?

*With all our extra time, we could actually research the Presidential candidates and cast informed votes in the primaries.

*Maybe people could fill the profound silence by listening to the perspectives of minority groups, such as people with disabilities.

Happy Anniversary to us!

2007-10-11T14:12:00.000-05:00

We've had one full year of disability blog carnivals - thought-provoking, interesting and fun collections of posts about all sorts of different topics.

Disability Blog Carnival #24: The 1st Anniversary Edition is no different - varied, great posts on the theme of milestones. Head on over and check them out!

Thanks to all the hosts, posters, and commenters - I really enjoy our every other Thursday gatherings. Quite a blogsosphere community we have developed! And a huge applause for our fearless organizer Penny Richards!

Another assault on human rights

2007-10-09T15:13:00.000-05:00

How can it not break your heart to hear of people being treated as less than human? I know it can be seen over and over again around the world, but it still feels like a punch in the stomach, knocking me breathless and sapping my energy.

Last January, I was shocked to learn of the decision and public support for the surgical and hormonal alteration of a 6 year old girl. Now it's happening again, this time in the UK, and this time I feel older and I am not surprised; I just feel great sadness. Why is it that our societies don't or won't support families challenged by the care of their loved ones with disabilities? How do we convince ourselves that we don't need to think creatively, that we don't need to problem-solve, that we can jump right in and tinker with the healthy body parts of another person?

I hope I never am convinced. I'd rather feel a punch in the stomach than cold, mind-numbing apathy.

Helpful links:

Penny Richards at Disability Studies at Temple U is continually updating links to bloggers' views on this issue.
When the Slippery Slope Becomes a Mudslide - Exceptional Parent's position statement
United Nations Convention on the Rights of Persons with Disabilities
Modify the System, Not the Person from the Disability Rights Education Rights & Education Defense Fund

Voting questionnaire

2007-10-08T22:44:00.000-05:00

A friend from my high school days contacted me about a newstory that she is writing for her journalism class at NYU. Katie is a journalism and politics major, and is writing about access to voting for people with disabilities. I answered her questions and offered to post her questions here so that she could maybe get a few more responses. If you have a disability and can take a few minutes to answer any or all of her questions by noon on Wednesday, October 10, she'd greatly appreciate it.

Two New York Times articles last summer (here and here) addressed the issues and delays of voting machines which allow independent access to voting by those with disabilities.

Katie's questions:

1. Have you voted (for President, Congress, even school board)?

2. If so, tell me about your experience - did you use a paper ballot or a machine? Did you find the system difficult? Any problems getting to the voting place?

3. If not, why didn't you vote?

4. Do you plan to vote in the 2008 Presidential election?

5. There is a federal law stating that all disabled persons must be able to cast their vote without assistance, because someone helping them might influence their vote. Do you think this is important? Is voting on your own a part of being independent?

6. The new law discussed in the New York Times articles is being debated because experts are worried that the voting machines that are easiest for most disabled people to use may not be totally secure - it is possible that hackers could hack into the system and screw up the votes. So, politicians are trying to balance what is most important - giving the disabled full access to voting or protecting voting security. What do you think?

7. Do you think it is important for every effort to be made to help disabled people vote? Why?

8. What would you think if you found out that the voting machines used to help the disabled were being canceled because of hacking concerns?

9. What would be the easiest way for you to cast a ballot?

10. Do you have any political issues that are especially important to you? What are they and why?

Email your answers to Katie at: km1312@nyu.edu no later than Wednesday at noon. Your thoughts on any of the questions would be appreciated.

Thank you!

Milemarker Mania

2007-10-08T20:31:00.000-05:00

I like to travel. I’ve talked on this blog about my Wisconsin summer vacation, my Costa Rica adventure, and my Yellowstone vacation. When I was 10 years old, my family took a 2 week car trip around Lake Michigan. The vacation was a combination of driving, sightseeing, visiting cousins, swimming, biking, hiking, and just hanging out together.

On our drive, we stopped at picturesque lighthouses along both Lake Michigan and Lake Superior. As a passenger in the car, I watched lush, green forests go by my window, and for the first time, noticed milemarkers along the highways. I learned that these posts tell you how far you are along your road and, if you do the math, how much further you have to travel to get to your destination.

One often hears that life is a journey, and that the goal is not to race to the “finish line”, but rather to embrace the whole trip. Yet, when you are a child growing up with a disability, many people, particularly educators and health care providers, focus solely on your milemarkers, as though the milemarkers and the journey are one and the same. Gross motor skills, fine motor skills, speech and language abilities, cognitive skills, academic level, activities of daily living skills, social skills and on and on - it is easy to become consumed with measuring progress against these markers, and take them on as though they were life itself.

My parents carefully planned the routes we would take for our Lake Michigan adventure; we traveled through northwest Indiana and southern Michigan, spent a few days visiting Sleeping Bear Dunes and Traverse City, took a bike trip around Mackinac Island, drove along chilly Lake Superior, and then traveled home through the farmlands of Wisconsin. My parents planned the daily mileage, the finances, the fun, the food, and the sights we would see. They also left room for potential adjustments in the itinerary, and adjustments did take place when we were having a particularly fun time somewhere or when a road was closed due to construction.

The same careful planning is important for my life – defining my priorities and what will make my life full and fulfilling, and then considering how to reach these priorities. I also have to be open for the unexpected pleasures and necessary detours along the way. For example, when I started my interview project, I never expected to have so much fun blogging, to "meet" so many interesting people through the blog carnivals, to learn from the experiences of others and to feel a part of an internet community; I very much appreciate this unique side trip.

Like the time I waited in a long line for a piece of famous Mackinaw Island fudge, sometimes short term sacrifices are necessary to achieve a long term benefit. For example, I do a lot of physical therapy – not how I’d like to spend several hours a week. The reward is not the range of motion of my hips or the fact that I can get good chest and diaphragm expansion. Those are merely milemarkers. What is meaningful is being able to have fun singing, having the breath support to be able to speak understandably, and getting fewer respiratory infections. Sometimes my motivation to endure physical therapy is to avoid a major hip or back surgery, just as when a driver chooses an unpleasant bumpy backroad detour to avoid a bridge that is out.

Milemarkers just give a number, a neutral number. They don’t tell you if you are on the road to New York or the road to California and they won’t inform you to what road is best for you. So, before looking at the milemarkers, thinking carefully about where each road leads is wise. Which of the many possible roads, should one choose? Sometimes, multiple roads can be taken at the same time, while other times that is just not practical, and choices need to be made.

Milemarkers are wooden or concrete posts stuck in the ground, and they give limited, lifeless information. My trip around Lake Michigan was not merely driving from one milemarker to the next – what a drag that would have been! I would have missed so much of Lake Michigan, so many fun times with my family. Nor should life be merely a rote, absent-minded journey from one milemarker to the next, with no thought of the road, the destination, or the beauty of the present.

Dave's Faves 1

2007-09-29T16:14:00.000-05:00

School and health issues are keeping me out of advocating trouble. I’m not having as much time as I’d like to post my thoughts, but many other bloggers are writing great stuff, and there are always interesting things to be found in the news. So, welcome to the first “Dave’s Faves”, where I’ll be linking to some of those interesting finds.

Steve Kuusisto, dealing with a guide dog stress injury, hits on an issue that is all too common for people with disabilities. “I wonder sometimes if the able bodied public knows that people with disabilities have stress injuries that are the result of their accommodations. Wheelchair users have carpal tunnel syndrome; back aches, neck aches, profound tension headaches—all of these things are essentially the norm for PWDs." So true. I need my computer because I cannot handwrite, but I get neck pain from using my computer too much. It’s tough to figure out the right balance when the computer is a necessary part of my independence and yet causes me so much pain.

"This is best for you." Ruth eloquently writes about those simple, yet incredibly annoying words that people with disabilities hear from total strangers. “So far the winner is a secretary at a local DME provider who ‘decided’ which wheelchair was best for me in less than a minute. I suppose she had a chart in front of her which indicated the exact model to "prescribe" for a quadriplegic. When I brought up the issue of what medical folks thought I should have, she promptly replied ‘Oh no. The model I gave you is the one you need.’”

As people often presume incompetence in all areas when one is in a wheelchair, Bridget Houlihan offers great examples about "what it takes to simply be your best when your have a disability." I can relate to her experience of hoping a college education would encourage people to take her more seriously.

“Bah humbug.” In Goals schmoals, Terrible Palsy shares her feelings about school and therapy goals for her son. “Stick your goals where the sun don’t shine. Happiness is all that matters.” Right on!

Thanks to Ruth for noting this USA Today article about the rise in reporting of housing discrimination. I did not know that housing discrimination on the basis of disability was as prevalent as discrimination based on race.

Ever been in the hospital at night? I have. Billie, at Micropreemie Twins, shares the wonderful night’s sleep she and her daughter get while in the hospital. Not! It’s common knowledge that sleep is necessary for healing – someone needs to tell hospital personnel.

Disaboom is a new website hoping to become a resource for the disability community. Check it out.

Mobility International USA is looking for 15-17 year olds with and without disabilities to participate in a 21 day trip to Bahrain next summer.

Finally, Amanda, at Ballastexistenz, shares and analyzes the story of a boy who really was a hero in Kid Hero Saves a Teacher.

Carnival time!

2007-09-27T13:41:00.000-05:00

Check out Pedestrian Hostile for Disability Blog Carnival #23, "Simply the Best!" I haven't had a chance to check out the links, but there are a lot and they look varied and interesting.

It's Carnival time!

2007-09-13T08:52:00.000-05:00

Jodi Reimer at Reimer Reason has put together an awesome collection of posts on the them of "Resilience". Check them out!

Going to college: high-tech, low-tech, mom-tech

2007-09-09T22:48:00.000-05:00

This week I started college at Dominican University in River Forest, Illinois. I'm excited and looking forward to a challenging (in the good sense!) and rewarding experience.

It's taken me a couple months to address my unique needs for college. I know from other experiences that planning makes a big difference. But, I also know that even with the best planning, unpleasant surprises and delays occur.

I have a few new things to help meet my various needs - some high-tech, some low-tech, and some designed with the tools of improvisation (like velcro, duct tape, items intended for other use) with which every person with a disability becomes all too familiar. Like other times in my life, many adaptations were designed by a creative genius, a.k.a. my mother, because there was no product that exactly worked for me.

Improvisation is a key aspect of living with a disability. Many times there are no products available to meet the individual’s specific purpose. You have to use your imagination and be creative. In the basement, my family has a box filled with Velcro, extra padding, spare parts, and a ready supply of duct tape.

The staff from the University of Illinois Assistive Technology Unit, who I started meeting with last March, designed and installed a small flip-out tray for my Kensington Trackball. They designed it so that I can store the little tray under my wheelchair tray, and independently move it into place when needed. They also designed my armrest to flip open to give my wrist added support while using the trackball. Now I can use my laptop computer while in my wheelchair! At this time, though, I still prefer to lie on the floor and use the computer, including my Dragon software, because then I can have all my papers on the floor to look at and sort through. And, I can roll around and change position as needed; my back doesn't get quite as sore.

I needed to get a cell phone for school. My parents spent a lot of time checking out the possibilities. Unfortunately, the UIC AT people didn't have advice on particular phones. Access World had an article on cell phones, and Planet Mobility had information on a 100% voice activated phone. Also, Jitterbug makes an easy to use cell phone. None of those exactly met my needs. We went to the Verizon store and picked a phone that seems like a good match for me - the GzOne phone. It's a rugged phone, made to stand up to shock (i.e. accidental dropping) and also water resistant. The buttons were not too hard to operate, and we programmed the numbers I'd use the most into speed dialing, so that I can call them with the press of one button. I decided against a Bluetooth headset because I am not able to get the headset on and off by myself. I also was not able to flip the phone open in its original form. We put the phone in a holster, and taped an old caribiner hook on the back. Now I had something I could grip with my left hand. Then my mom threaded a string through two washers and taped it all to the top of the phone. With my right hand, I can grab the string and flip open the phone.

My mom found two different baby stroller cup holders and set up one for my water bottle. The other one she rigged up to be attached to the first one and to hold my cell phone. She also attached a strap to the phone to make it easier to pull out of its cup holder.

I also bought the Day Cruiser bag from Wheelchair Gear, which is attached to the left side of my chair. With practice, I am getting the hang of opening the velcro flap and getting into the bag. We may have to remove the velcro. We attached a key chain holder to the zipper compartment with the hope that I can get the hang of using that compartment also.

I have also worked with the university to address my needs. This semester, I’m only taking two classes to make it easier to juggle academics, learn the ins and outs of addressing my needs, do physical therapy, and, of course, have time for fun stuff.

I emailed my professors over the summer to explain some of my needs. I ordered audio version of my textbooks from RFB&D and my local branch of the National Library Service for the Blind. And, I just got a subscription with Bookshare. (Even with all that planning, I still don't have all my books in an audio format!)

After the first day of class, I met with my professors to talk about what I needed to succeed in their classes. I was pleased that they were both receptive, and the meetings went well.

Each professor is helping me to find a classmate to be my notetaker. The classmate will make a copy of his or her notes for meand get paid $9 dollars an hour by the Department Of Rehabilitation Services Vocational Rehab (DORS). DORS has been a great support thus far - helping with some of my tuition and also with books and equipment costs.

I don't have the care of my personal needs (eating, bathrooming) figured out yet. With the light load I am taking this semester, I'll just address those needs at home for now.

I’m looking forward to the start of this college adventure. I don't think I'll be doing any interviews in the near future, but I still plan to continue blogging and sharing my two cents. Sorry, the blogosphere can’t get rid of me!

Telethons and Pity

2007-09-03T16:54:00.000-05:00

Today is Labor Day, and, to many people, that means it’s time for Jerry Lewis and the MDA Telethon. I had never watched the telethon, and this year I checked it out for the first time. I have to say, I didn’t watch much of it, and it was enough. I am not going to comment on the mission of the Muscular Dystrophy Association (MDA); I am not familiar it. However, I would like to comment on the destructiveness of pity.

1. Pity fosters negativity. The negative aspects of the condition are emphasized and magnified, rather then the positive aspects and enormous potential of the individual's life. Instead of focusing on what a person can do by embracing all their strengths and gifts, pity limits a person.

2. Pity promotes the view of charity rather than the view of inclusion. Charity for pity divides people into 2 groups, the “haves” and the “have nots”. The premise is that the person who “has” will help the person who “does not have,” because the “haves” feel sorry for the “have nots”, rather than because it is the morally appropriate action to do. Unlike pity, inclusion encourages respectful dialogue to discuss ways to adapt to the obstacles of society.

3. Charity often seems focused on making those that contribute to the charity feel warm-and-fuzzy-good about themselves. That is the wrong focus. An action should be taken because it is the right thing to do, because it is fair and just.

4. Although often without consciously recognizing it, the person who is pitied usually has to conform in some way to the giver’s expectations and stereotypes to receive the charity. For example, in extracurricular activities in school, it seems to me that children with disabilities often have to participate in the sport or activity that has the most willing coach or advisor, rather than in the activity that the child likes the best or has a natural affinity for.

5. Pity lowers an individual’s self-esteem. It’s hard to feel good about yourself, when you are seen as a drain and burden on others.

6. Pity towards people with disabilities gives society the false impression that disability and happiness cannot coexist. That isn’t necessarily true, and that simply serves to cause more pity.

7. Another problem with charity for pity is that it can give the impression that once the charitable act has been done, societal responsibilities are finished. A corporation that publicly writes a check to MDA is still obligated to provide an inclusive work environment with fair opportunities even though they likely won’t receive public recognition for those actions.

Check out Protest Pity, The Blog Against the Telethon, for an excellent collection of thought-provoking posts about the telethon from the point of view of people with disabilities.

New Television Channel

2007-08-28T20:38:00.000-05:00

UPDATE: New blog address for [with]TV found here.

Check out a new website and link on my blogroll, [with]tv. Connie has been asking me to write about this for a while, and I’m just now getting to it.

According to its blog, [with]tv is “ a start-up corporation devoted to providing television and Internet programming of, by, and for people with disabilities.”
Connie, from Planet of the Blind, is a volunteer blogmaster for the website and is looking for people to submit posts. You don’t have to be a blogger to participate. You can email Connie at articles@with-tv.com.

Yet another way for our perspectives to be heard. How cool is that! And, when you visit the [with]TV website, be sure to sign the guestbook and share your ideas and support.

Move over David Letterman and BBC Ouch, here come the bloggers!

2007-08-21T20:26:00.000-05:00

Welcome to the 21st Disability Blog Carnival! Thanks to all who participated, and thanks to our fabulous organizer, Penny Richards. The topic for this carnival is Top Ten Lists, and people put together a variety of lists on a variety of topics. There were, however, some common themes to our lists.

Charles Darwin said, “Adapt or Perish." Well, we’re adaptable…

"If you hung with us long enough you might be too,” says Midlife and Treachery's I'mFunnyToo in her post, "Top Ten Reasons for the Able to Pay Attention".

Greg Traynor from Pitt Rehab talks about how his service dog helps him in "Top Ten Reasons to have a Service Dog". “Having a service dog empowers and enables me to become more independent."

Tokah, of From Where I’m Sitting, talks about places to go to find people who need to adapt their attitudes in "Top Ten Day" - antique sailing ship, anyone?

Speaking of sailing --- Elizabeth McClung, from Screw Bronze has learned a few lessons from a recent sailing trip - lessons about rudders, EMTs, and escaping an eavesdropping boy's sexual questions.

Information Removes Barriers. The more we can know and understand about each other, the more inclusive our society can be.

Over at Arthritic Young Thing, Zephyr offers strong, specific suggestions for supporting someone with Post-Traumatic Stress Disorder. She says, “Remember, it’s not about you.”

“Help me know what to expect,” and “tell me what ‘to do’, not ‘what not to do’,” says Jodi from Reimer Reasons in "Top Ten Ways to Support People With Intellectual Disabilities".

Andrea from Andrea's Buzzing About shares the "Top Ten Things About Having Face Blindness", like "less clutter around the house without a gazillion photographs of family relations."

In "How to Use The Sidewalk: Etiquette Tips for Walkies", Wheelchair Dancer explains some rules of the road. "Keep your coffee/purse/briefcase under control. I hate being hit in the face or scalded by Starbucks.”

Get the facts straight about Down Syndrome by reading Michelle’s post on Big Blueberry Eyes. Do you know: Down or Down’s? Which chromosome is affected? What’s the prevalence?

Pity the Fool.

Dave Hingsburger at Chewing the Fat has been wondering. "I wonder why people choose to work within the disability field and then resent the needs of people with disabilities."

Shawn, from Along the Spectrum, has some advice for the Autism Speaks Wright family, and for any of us consumed with pity, "Breathe in, breathe out, move on" and “When it starts to feel like everyone is against you, you are probably your own worst enemy.

Boxes, boxes everywhere; let’s dump the labels and see people as people.

The dad at Autism Bites shares his "Top 10 Snappy Answers To Annoying Comments". To “all he needs is more discipline, and he'll get the message,” he’d say, “yup, it’s true –if you give a child enough time outs, he’ll just stop being autistic. And if I speak French to you loudly enough, you’ll become fluent!”

Kathryn from Ryn Tales gets rid of boxes and sees the unexpected blessings of going to Holland. “I got to read a lot of poetry dissing the Dutch” and “the lines are shorter” and “my marriage has remained strong and wonderful.”

Charming BB's mom says, "My favorite phlebotomist is Cheryl." She shares her newly acquired language and more in "10 Things I Never Thought I'd Say."

You bet, and proud of it!

I wrote a post last April listing my tips for service providers - namely, respect, respect, and more respect. “You were not hired to be my minister, my parent or my buddy.”

Karen, an occupational therapy student and new blogger is stepping into a new world. She shares her love of her new career and learning through reading disability bloggers, “I realize, again via these blogs, that non-compliance has less to do with the client being stubborn and more to do with me not fully understanding their true needs.” Yes!! You are on your way.

People say the darndest things.

Paula Apodaca of E is for Epilepsy shares two lists full of incredibly dumb things people have said to her. “You have epilepsy so you must be retarded,” and from a doctor, “your mother was likely frightened by something while she was pregnant with you.”

“Try walking a little further each day” and other unhelpful advice makes up a list of "Top Ten things not to say to a PWME", at L’Ombre de mon ombre.

You’ll be amazed at what has been said to Jacqui of Terrible Palsy. Check it out in “Where did ya hide me M&Ms?" “He’s too good looking to have CP.” I have CP and I’m good looking – if I do say so myself! ;-)

AmpuTeeHee shares a really awful day full of insensitive stupidity, that starts with, “I know about you people” in "Tulips sure, but it’s not all wine and roses over here".

Ever wonder what it’s like to be Brad Pitt or Angelina Jolie? Ema from Rainmom and Life under the Umbrella shares the "Top 10 Reasons autism is like fame" – “having your past scrutinized to discover your sins” and other similarities.

"There comes a time when even the best advocates need a day off."

Having just completed the "On Holiday!" carnival, Andrea puts together "10 Things to do Differently when on holiday: Redefining vacationing.” It’s a good compilation gleaned from the last carnival and life experience. I’m ready for another vacation – where to, Andrea?

Food connoisseur Bridget Houlihan gives Top Ten advice on wheelchair friendly dining out. Did you know that wine bars and sports bars have lower tables that tend to work better for wheelchairs? Now that I am 21, I’ll have to check that out!

There’s still time for some summer reading. Jennifer Justice at Pedestrian Hostile puts together "Top Ten Disability Lit Titles", from Sulah to Cuckoo to A Christmas Memory to Jane Eyre.

Along the same vein, Penny Richards at Disability Studies, Temple U, shares "Ten Disabled Characters" from novels on her bookshelves. She gives a detailed description of the characters and how they fit into the story lines from logging camps to love and romance to music to wise parenting. Sounds like you have quite a library, Penny!

"Inclusion Mishap #9: Due to a faulty intercom, Mrs. Snippett thought the principl said, 'You have a new student coming to your classroom. He has disabilities. Do your best to elude him."

Laugh, laugh, and laugh some more.

“You know the hardest thing about having cerebral palsy and being a woman? It’s plucking your eyebrows. That’s how I originally got pierced ears.” Ouch blogger, Dave Hingsburger shares his favorite disability quotes.

Shiva at Biodiverse Resistance lists the "Top 10 Unintentional Anthems": “I Don’t Want Nobody to Give Me Nothing” and “Why?” and “Stepping Out of Line” are a few of the selections.

Also for the musically inclined, Ruth at Wheelie Catholic will have you singing along with hot tunes and classics, “I Left My Crutch in San Francisco” and “Quads Just Want to Have Fun” and “You are the Guide Dog of my Life.”

Do you know why “Normal People” wish they were disabled? Steve Kuusisto at Planet of the Blind has the answers. I hadn’t fully realized how jealous "they" were of my special powers, similarity to the Pope, and sneakiness. Thanks, Steve – this is good stuff to know..

Enough said.

Dream Mom reflects on the life lessons learned from having a child with a disability, “he taught me that children with disabilities are not children to be afraid of, but rather children to celebrate.”

Kristina Chew from Autism Vox shares the ways that she and her son Charlie are the same. Be sure to check out the comments as her readers then list the ways that they are the same as someone they love. It’s a great read – “We like school and are not happy if we miss days” and “We both like potato chips and chocolate (but not together)” and “We both love going to the beach.”

And the Number One disability theme is ….

What’s the big deal? Disability is normal. And, besides, being normal is overrated.

With help from Liz Spikol of The Trouble with Spikol it should be easy to see the arbitrariness of, ambiguity of, and disservice of labels after labels after labels in "Time is on our side".

And, Connie Kuusisto shares “My Husband is Blind. Top Ten Questions I’m Asked.” “He always looks so good. Do you pick out his clothes?” and “Does he know what you look like?” and “Shall I trim his eyebrows?” Well, Connie, don’t keep us in suspense, does Steve want his eyebrows trimmed?

Thanks for all who submitted wonderful posts for this carnival. Let me know if any of the links aren't working right. If you can't get enough Top Ten lists, check out "Ouch Top Ten". Always fun stuff there.

UPDATE: Late entry from Goldfish that fits in maybe #10, or #9, or #7 or a few places I guess. "My Top Eleven Things I Wish Someone Had Told Me About Chronic Illness Eleven Years Ago..." is chock full of lessons learned about living fully, such as "You are not a medical condition" and "Nobody is really going to understand what you are going through." Check it out!
One more: Over at Twinkle Little Star, Lisa lists "The Ten Most Litigous Comments Made to Me in Job Interviews." "Without my glasses, I can't see a thing. And I know I couldn't teach kids without my glasses. I just don't see how it's possible." Incredible!

The next carnival will be hosted by Reimer Reason on September 13, with entries due by September 10. Posts can be submitted via the carnival site. Update - Penny says the theme is "Resilience".

On a very serious note, two stories that we all need to be made aware of:
The tragic death of Ruben Navarro, allegedly killed by his doctor, and Utah Medicaid will no longer be paying for wheelchairs to be used outside of the home.

The pictures for this carnival all come from Dan Wilkins at The Nth Degree. If you've never checked out his site, head on over - he's got buttons, bumper stickers, and t shirts, and lots of disability culture writing.

Thanks to my mom for putting together the Disability Blog Carnival logo with Dan Wilkins Ramp Minds picture, and for putting the "numbers" on all of The Nth Degree artwork.

Descriptions of pictures: Carnival Logo: A guy with a rather absent look in his eyes has a wheelchair ramp switchbacking up to his head. He is wearing a black hat which is flipped open and several people (one in a wheelchair, one with a cane) are falling into his head. Dan Wilkins' title is Ramp Minds. "Ramp your mind at the Disability Blog Carnival" is added across the ramp. Picture number 10: a dark green t shirt with the quote, "Adapt or Perish" and a picture of the progression of humans from the chimp to the primitive man to upright man and finally to the person in a wheelchair. A purple "10" has been added in the lower right corner. Dog pin: a dark green pin with a dog pawprint and "Meet me after work for some heavy petting. Woof!" Picture number 9: a white t shirt with the words "Barrier Removal Team" written in red around a circle crossing out stairs and a red number 9 added in the lower right corner. Picture number 8: a black t shirt with bright pink lettering, "Piss on Pity" and a bright pink number 8. Picture number 7: a picture of the front and back of a black t shirt. The front shows a crossed out circle with boxes in the middle and the words "no boxes" underneath. On the back is written, "see the whole kid". A lime green number 7 has been added. Picture number 6: a beige rectangular pin with red lettering, "Feisty and non-compliant". A yellow 6 has been added. Picture number 5: a brown t shirt with white lettering, "Your attitude just might be my biggest barrier". A blue 5 has been added. Picture number 4: a black t shirt with white lettering, "There comes a time when even the best advocates need a day off." There is a picture of a fellow in a wheelchair, hair sticking up and thumbing his nose. A white number 4 has been added. Picture number 3: a white t shirt with a black, gray and white Michael Giangreco cartoon. The picture shows an adult woman (presumably Mrs. Snippett) peaking around a corner to see child in a wheelchair further down the hall. The caption reads, "Inclusion mishap #9: Due to a faulty intercom, Mrs. Snippett thought the principal said, "You have a new student coming to your classroom. He has disabilities. Do your best to elude him." A brown number 3 has been added. Picture number 2: A brown t shirt with white lettering, "I AM. Therefore, I matter." An orange number 2 has been added. Picture number 1: A brown t shirt with white lettering, "Severely normal". An aqua number 1 has been added.

Ruben Navarro

2007-08-20T19:58:00.000-05:00

I have blogged before about the treatment of people with disabilities as less than human. But never murder.

I hope the horrific story of Ruben Navarro, the young man whose death was allegedly hastened by a physician, has caught your attention -- but it may not have since it has been minimally covered in the media. The local news station covered it here, but there doesn't seem to be much other coverage. According to the news station, a transplant surgeon is "facing three separate felony charges in connection with the death" of the young man.

The tragedy is thoroughly covered on "Big Noise, A Blog about Equality, Freedom, and Justice". There are quite a few links to details of the story and to the actual complaint filed by Ruben's mother. Ruben Navarro was a young man with a disability who was institutionalized when his parents could no longer care for him. Within 5 months he was dead, seemingly murdered by a doctor who wanted quicken his death and harvest his organs for transplantation.

Please check the link and learn the sad horrible details.

Kids Are Kids!

2007-08-14T16:34:00.000-05:00

Thanks to Ruth and Connie for finding this interesting article about a recent study that concludes children with cerebral palsy are no less happy then their able bodied peers,

The study surveyed 500 8-12 year old children with cerebral palsy and found that while they participated in less activities then able bodied children their enjoyment of life was just as great.

Professor Alan Colver, of Newcastle University who conducted the study hit the nail on the head.” The change now needed concerns attitudes. Pity and sorrow should not be directed to disabled children because our findings indicate that they experience life as do non-disabled children. Maximum effort is needed to ensure their rights as citizens, rather than as disabled children, to participate in society as fully as other children."

Of course! Kids are kids. They just want to have a good time. Check out pictures of Moo, Ellie, Holland and Eden all having fun.

Let’s do what we can to not take happiness away from children through exclusion, pity, and lack of opportunity.

Come to the Carnival!

2007-08-09T07:21:00.000-05:00

Go to Andrea’s Buzzing About and check out the latest disability blog carnival! The theme for this one is "ON HOLIDAY!" - a fun theme for the summertime. There's sights, sounds, and even....food!

The next disability blog carnival will be right here in two weeks, on Thursday, August 23. The theme will be “Top Ten Lists” a la David Letterman and BBC Ouch Magazine.

You can make a Top Ten list about anything you want; any topic, any style is fair game - the Top Ten moments of the Disability Rights Movement, Top Ten reasons you enjoy blogging, Top Ten funniest questions you've been asked, Top Ten pieces of advice for some unsuspecting person. Your entry can be serious or humorous. Ouch’s lists may get your creative juices flowing. Here's one I wrote a few months back.

Everyone is welcome - I hope you'll write your own list and send it to me at the carnival site by Monday, August 20, or via my email (in my profile).

I look forward to reading your lists. It should be a fun way to closeout this summer of carnivals on borders, laughter, carnival and a baby, sex, and holiday!

“…not this separate category of human beings”

2007-08-08T14:14:00.000-05:00

Fifty years ago, babies born with developmental disabilities were routinely placed in institutions by their families under the direction of their family doctors. Health care professionals often advised families to forget the child, to have other children, and move on with their lives. It’s an appalling time in our history – babies and young children routinely abandoned and forgotten.

I think it’s important that we recognize and remember this cruel part of our history. Kay Olson from the Gimp Parade says,

“My personal thought on what happened 40+ years ago is that it was a tragedy for whole families and has undoubtedly had a lasting impact on how we view developmentally disabled people today. That is, we're still living with the legacy of those folks being segregated, made invisible, and devalued. It has impacted how we view developmental disability and the way we think of difference - we have all been taught implicitly by this history that people who are intellectually or developmentally different do not belong among us because they're dangerous, completely incompetent and lack any ability to contribute to society.”

While I was away last week, CNN covered the story of one man’s search for his sister. Jeff Daly made a documentary, “Where’s Molly?” in which he talks candidly about what it was like to be a 6 year old and have his sister sent away, rarely spoken of and advised to be forgotten. CNN shows a clip of the documentary and has an excellent article on Jeff’s and Molly’s experiences.

Kay’s words above are in a CNN blog that she wrote on this topic. She writes about he challenges of accurate diagnosis and the even greater challenges of predicting potential.

More from Kay on how the line between “us” and “them” is not so solid and clear cut:

“I think the main thing that nondisabled people don't necessarily know or understand is that developmentally disabled people are not this separate category of human beings. People tend to think, "We can do things. They cannot." And there's no line like that dividing all of us. There are shades of ability, varying talents that surface in surprising places. This is true for physical disabilities as well. Most of us, in the course of our lives, discover we have abilities or affinities for some things and lack talent elsewhere, so this idea that a certain class of people lack value or the ability to contribute inevitably underestimates and wastes a lot of human potential.”

I think it’s important that Jeff and Molly Daly’s story be heard. We cannot move forward until we acknowledge where we have come from. Jeff Daly is now working to reunite families affected by this tragedy. There is a national registry, called The National Find Families Registry, to help families affected by institutionalization to find each other.

Thanks to Elizabeth Cohen and Jennifer Pifer of CNN for bringing this important issue to the public’s attention. So often, it feels like the media’s stories about disabilities are superficial and artificial, “feel good” stories that are designed to entertain or “inspire” those without disabilities; stories that maintain difference, segregation, and the status quo. This is a real story with important ramifications, things to contemplate and learn, and also with actions to be taken.

Lastly, I have to say how much I admire Kay Olson’s style of advocacy. Her approach is thoughtful, reflective and encourages open dialogue. She is thought provoking and assertive without being hurtful or condescending. Kay is the quintessential advocate. I learn a lot from you, Kay - Thanks!

I Like Vacations!

2007-08-06T21:02:00.000-05:00

I just returned from a beautiful trip to Wisconsin where I went bike riding on the Rails to Trails Elroy-Sparta bike trail, swam, played card games with my family, and went to a play.

I really look forward to going on a vacation. One reason is because it’s a welcome break from the everyday hassles of appointments, therapy, equipment, caregivers, etc, etc. Sometimes the everyday "stuff" of living with cerebral palsy can drive me crazy. It’s nice to get away, relax, explore new places, and hangout with my family. Of course, there are plenty of hassles with traveling, but I try not to dwell on them and try to enjoy the new adventures.

My parents bought this Duet bike 11 years ago. I love riding on it because I can feel the wind in my face and being on trails feels calm and peaceful. I cannot last too long on it because it doesn’t provide enough support. But that’s okay – it’s fun!

The Elroy-Sparta Bike Trail is neat
because it is fairly level (having been an old train track) and scenic. It also has many bridges that you cross and 3 long, dark, creepy tunnels that you walk your bike through.

The picture of me on the bench is when I was taking a lunch break at Gina’s Pies are Square. Yum!

I like to swim. We’ve figured out a way that works well for me. I wear a life jacket (it gives head support) and an inexpensive inner tube. When I’m not relaxing and floating on my back (like in this picture from a few years ago), I can paddle on my stomach and swim around. Moving in the water is so much easier for me than moving with gravity.

This card holder has seen me through many games of GO FISH, Old Maid, rummy, hearts, and poker. This trip we played Back Alley Bridge and Euchre.

Recently, my family has started taking in a play on some vacations. This time we went to the American Player’s Theatre in Spring Green, Wisconsin. It was fabulous!

I like vacations! Can't wait for the next one!

Discomfort at first sight

2007-07-27T21:17:00.000-05:00

Ruth, from Wheelie Catholic and A Different Light, wrote D is for Discomfort - a post with her thoughts on an observation that my aide made on our recent trip to Costa Rica. My aide Ryan noticed people's initial response of discomfort to meeting me and my energy put into making them feel comfortable.

Ruth relates to my experiences. And as a person with an acquired impairment, I am guessing that she notices a huge difference in the "before" and "after" first encounters with people.

I have grown up with cerebral palsy, and I am used to people staring at me from a distance, people looking away from me as if they might "catch" what I have, people talking to my friends or family as if I'm not there, and people looking at me with pity and sadness. Even though I am used to it, it still makes me angry, and I get tired of all the energy I have to put into "proving" that I am a real person. Still, I try not to let it get to me.

Ruth has some good suggestions. If you are uncomfortable with people who look different than you, I hope you'll check out Ruth's post. I hope you'll find it helpful.

It's Carnival time!

2007-07-27T19:31:00.000-05:00

Disability Carnival 19: Sex and Disability

Zephyr from Arthritic Young Thing has put together some wonderful posts about this topic. As she says, “Oftentimes, people with disabilities are perceived as asexual creatures who have no sexual needs or desires. Other people assume that no one could ever desire us sexually, or that we could ever have satisfying sex lives. Many of us can and do.”

Check it out!

Illinois Youth with Disabilities Leadership Summit

2007-07-25T19:50:00.000-05:00

I just returned this evening from a disability conference in Springfield, Illinois. The Illinois Youth with Disabilities Leadership Summit is a great chance for young people from Illinois to learn about disability history, disability law, and disability advocacy, and a chance to meet and get to know other young people.
This was my first year going as a mentor, and I had a wonderful time.

This is an annual event - if you are a young person in Illinois who has a disability, check it out and consider it for next year!

My Costa Rica experience: A slideshow and reflections

2007-07-20T17:18:00.000-05:00

Free MySpace slideshows, photo and video editing at www.OneTrueMedia.com

• Family is a very important part of Costa Rican culture. Most of my host family’s relatives lived very close to each other, and nearly everyday members of the family would get together for dinner or coffee. Often, it would be a very large group. Family members on both my mom and dad’s sides of the family gathered regularly, seemed to know each other well, and had fun together at parties. And, there was always a reason to have a party, including having a visit from me!

• Ryan, my friend who came along on the trip to be my personal assistant, and I were treated like family. Eduardo, Marianela and their daughter Marypaz welcomed us with open arms. On our first night, they had relatives over to the house and ordered a pizza for us. Each morning we shared with the family a homemade breakfast including delicious Costa Rican coffee. Each evening, we shared in making and eating a Costa Rican dinner, we chatted, and we played games. One evening, Ryan and I came home around 8:30 in the evening after a very long day. Our host parents were waiting for us, wanting to hear about our day and share the social process of dinner-making with us.

• Costa Rica has the largest gap between the rich and poor of any country in Central America. Like in the United States, this could be seen in our drives throughout the country.

• I was struck by the lack of healthcare resources available to the people of Costa Rica. In the physical therapy department at one rehabilitation center, the physical therapy equipment and the all the patient beds were located in the same room. The hospital seemed to have only the necessary equipment. There were no extra amenities or “fluff” to make the hospital stay more enjoyable - no therapy wedges, no toys for children, no DVDs or books or magazines for adults, no paintings on the walls.

• In Costa Rica, people take their jobs very seriously and are proud to work hard and serve their customers. On my first night in Costa Rica, my taxi driver, spent two hours helping find the best way to get me comfortably in his taxi. At the end of the trip, one of our bus drivers wanted a picture with each of the delegates, saying, “You are such a special group, it’s a pleasure serving you.” Police officers were very helpful in helping us cross through busy San José traffic.

• At one center that we visited, some of the residents had been there for a long, long time. Some spoke of family that couldn’t or wouldn’t care for them. Some cried a lot, and others were very, very happy to have a visit from our group. Seeing people living in these sad circumstances was sobering and disconcerting. I realized how lucky I am to have a personal, family, financial, technological, and community resources that I have. We need to do better at taking care of each other in our world, and sharing our resources more equitably.

• I found it interesting to hear Ryan’s reflections on the experience. Ryan and I hadn't known each other that well prior to this trip, and this was our first time spending an extended period of time together. Ryan observed that many able bodied people in both the United States and Costa Rica seemed initially scared of me. They did not know what to say or how interact with me. However, once a conversation with started by me, they realized that we did indeed have commonalities. (I, of course, know and experience this fact everyday, but it was interesting to hear Ryan's take on it. I was reminded of Christie Gilson telling me that those of us with disabilities spend a lot of energy making other people feel comfortable with us.)

Ryan also came away from the experience with a profound respect for people with disabilities and their personal assistants. He had no idea how much time and energy it took to perform mundane, but necessary responsibilities. During the trip, he almost always had tasks to do. Once he finished one task he moved right on to the next one.

• All in all, I’ve had a powerful experience that continues to and will continue to impact my thoughts and life decisions. Thanks to all who have supported me.

Music on slideshow: Manu Chao, Me gustas tu

Disability Blog Carnival #18!

2007-07-14T12:28:00.000-05:00

Head on over to Retired Waif and check out her carnival. She has the best title yet for a carnival, “The Disabled! We’re just like You!!!” She and the posts she has assembled do a fantastic job of illustrating this very important point.

P.S. I'll be posting more on my Costa Rica adventure soon.

I'm back!

2007-07-06T16:13:00.000-05:00

I'm resting and recuperating today from a wonderful and amazing trip.

This picture shows our group. The 3 gentlemen on the right side of the picture are Oscar, José Ángel, and Eduardo, Costa Rican disability activists and our hosts.

I'm posting my journal entries from earlier in the trip. I'll have more to say and pictures to post later. Thanks for all the good wishes!

sábado, 30 de junio

This was our last full day with our host families. In the morning our host mother, Marinella, took us to see a large church in their neighborhood. At 1 pm, we all joined the rest of the MIUSA group along with their host families , for an afternoon fiesta filled with food, socializing, singing, and dancing. Each host family was recognized and thanked by the each of us and also by the group. My host family, Toty (dad), Marinella (mom), and Marypaz (7 year old daughter), gave a short speech saying how he enjoyed having Ryan and me stay with them.

In the late afternoon, Minor, our taxi driver, picked Ryan and me up and we followed Toti, Marinella, and Maripas to Toti's sister and brother-in-law's house in the town of Tivas. We joined a family gathering of about 50 people, singing karaoke, dining, and having fun. It was very special.

The warmth and graciousness of my host family is incredible. Most of the people we have encountered here in Costa Rica possess this same warmth.

miércoles, 4 de julio

I've just returned from a relaxing e days at Carara National Park. We did lots of swimming and hiking and saw all sorts of wildlife. We went on a nicely accessible paved trail. We also went on a trail through the jungle and saw white-faced monkeys, McCaws, toads, iguanas lizards, and insects. There were a few rocky spots along the trail, but with teamwork, we got through them.

We also did some swimming at 2 beaches at the park. I floated in the water and found it warm, refreshing, and relaxing.

Carara is a beautiful national park, and they are looking to become more accessible. They asked for our suggestions. I appreciate this attitude and hope more people with disabilities will come to Carara.

This trip has gone by so fast. I can't believe it's coming to an end. I've met some wonderful people here and made what I hope will be lasting friendships.

Update from June 29

2007-06-30T14:11:00.000-05:00

viernes

Today we went to the University of Costa Rica and learned about their disability service program. They have 158 students with disabilities on campus. I was very impressed with the accessibility on campus; nearly every building had a ramp. I was also impressed with how the support service seemed to want to support many types of students disabilities. They seemed very on top of things.

Later, my host family hosted a barbeque. I got to meet other host families and socialize. The things that really stand out for me is al the families' overwhelming warmth and hospitality. I love my Costa Rican host family. I will miss them very much when I leave. Tomorrow is my last day with them as we will be departing for Parque Nacional Carara. (I don't know if I'll have any internet access.)

My trip ends Thursday. I can't believe it's going so fast.

Update from June 28

2007-06-30T14:09:00.000-05:00

jueves
Today we went to Volcan Poas National Park, which was very green and vibrant. It was raining and cloudy, so unfortunately when we reached the top, we could only see a little bit of the crater of the volcano.

We also drove through some of rural Costa Rica, and it was sunny then. Many of the houses had goats, cows, sheep, or other animals. There were many small markets along the way, selling fresh fruits and groceries.

Carnival Day!

2007-06-28T08:33:00.000-05:00

Connie and Steve at Planet of the Blind will have you rolling in laughter with Carnival #17: Laughter, the Best Medicine. You can read about Marvel Comics new hero, Colin Bowel, Mistaken Identity and much more.

Reflections on health care and attitudes in general

2007-06-26T22:44:00.000-05:00

martes

Today we visited the hospital again. A few things that stood out:

-The smallness of hospital rooms
There is not much space in some wings of the hospital. I thought about how hard it would be to have so little space.

-Lack of resources and equipment
They have only the necessary equipment. No extra helpful things. No balls or wedges in physical therapy room. No warming blankets in the recovery room. They had only the necessities, none of the "luxuries" that we have in our hospitals.

-The respect the hospital has toward people with disabilities.

For the first time, I saw a doctor who has a visible disability. Dr. Federico Montero, who is a quadriplegic, holds a high-ranking position in the hospital. His opinion is obviously respected and valued. I've personally never seen a doctor in the U.S. who publicly shows his or her disability. Dr. Montero has done a lot. He has spent three years in Switzerland, working on a project for the World Health Organization and is also a disability rights activist. Yesterday, he gave a long talk about how society's attitude is the problem, and how medical professionals generally don't respect their patients with disabilities.

There are also able-bodied professionals in the hospital who work to promote disability rights.

It is so good to see people with disabilities being respected here in Costa Rica. This respect has been a common theme in Costa Rica. An obvious example is the contrast between the taxi challenge here versus in Houston last week. In Houston we experienced repeated rudeness, not wanting to take my chair in an accessible cab if it required any adjustment to their usual way of doing things, an astonishing apathetic attitude about just not showing up for a scheduled appointment, little concern for my safety, and on and on. In San Jose the other day, our cab driver Minor waited and problem-solved helpfully with us for two hours without a single complaint.

Costa Rica may not have the accommodations of the U.S., but their attitude is more advanced.

Updates from June 24 & 25

2007-06-26T09:13:00.000-05:00

domingo

Today, Ryan and I had a very relaxing day with our host family. We first went to a lush and beautiful national park, and saw many types of animals, including deer, birds, and butterflies. Seeing and hearing all the animals was very relaxing and peaceful.

When we returned home, members of our host family's extended family joined us. We played games and chatted. They are a close family and welcomed Ryan and me as part of their family. I am amazed at how kind and welcoming Costa Ricans are.

lunes

Today we went to a government funded rehabilitation center in San Jose.

We learned a lot about the history of the center and its commitment to caring for people with disabilities. The hospital doesn't have the fanciest equipment, but it makes do. We took a tour of the different units and saw a wing where those who have operations and need physical therapy stay. (This area brought back many memories for me.)

Costa Rica has the biggest gap between the rich and the poor in all of Central America. The disability rights activists' goal is to make the hospital accessible to all people, rich and poor. The main theme of the day was that the problems lie with society's inability to accommodate the needs of people.

Update from June 23

2007-06-24T15:40:00.000-05:00

sábado

Today we went to two museums - The Museum of Jade and The Museum of Gold, where we learned about some of the indigenous tribes of Costa Rica. It was very interesting learning about the tribes.

Ryan and a couple of the others helped me navigate through the many obstacles in our path.

Ryan and I did not get a chance to take a picture of the potholes just yet, but when we do, we will show them to you. Some of them are enormous. It was very challenging terrain for my wheelchair, but with the help of Ryan and some of the other group members, I managed to do fine.

Ryan and I are now in the bedroom of our host family's house. My host family has a seven year old daughter who loves to draw pictures. Tonight she drew one of Ryan and me. It's been an absolutely surprising, overwhelming, and wonderful experience.

Update from June 22

2007-06-24T15:36:00.000-05:00

viernes

The wheelchair would not fit in to the taxi easily. It took Ryan and I some problem solving. Annie, the personal assistant and sister of one of our group leaders, and Minor, a taxi driver spent two hours with us, translating and thinking through how to fit into the taxi. Finally we figured out a way to make it work.

Today I met my host family. They are incredibly kind. The mother's sister, who lives next door, came over to welcome us with the primary family. My host dad is a quadriplegic. My host parents have a seven year old daughter. I was overwhelmed by my host family's desire to make Ryan and me feel welcome. They are warm and beautiful people. And I look forward to getting to know them in the coming days ahead. They said they'd been hosting people with disabilities from MIUSA for 15 years.

Pictures and A Petition

2007-06-22T19:13:00.000-05:00

From mom: Some pictures I received in my email.

I think this is the group going from the San Jose airport to the hostel.

This is one of the group leaders, herself an MIUSA alumna, having fun with the group.

David and one of the ASL interpreters - I believe they are entering Hostel Bekuo.

David also requests a link to the FRIDA petition to ask the American Medical Association to set up a Disability Advisory Committee. He hopes you'll sign the petition, so that the voices of those with disabilities can be formally heard by the medical profession.

And, for those in the Chicago area, David hopes you'll participate in the rally sponsored by FRIDA, Not Dead Yet and ADAPT to encourage the AMA to set up the Disability Advisory Committee. Here are the details:

Where: Chicago Hilton, 720 S. Michigan
When: Sunday, June 24, 2007
Time: 11:30 am to 3:30 pm

Costa Rica!

2007-06-22T07:25:00.000-05:00

Thursday, June 21

We had an exciting and tiring day traveling to Costa Rica. We got up very early to get ready for our flight. Wheelchair accessible cabs were supposed to meet us at our Houston hotel at 6:15 am, but none of the vehicles that arrived had handicap access. After much wrangling, the group finally all left the hotel about 7:45 am. (My mom, Ryan, and I had had similar challenges with an accessible ride in Houston on Tuesday.) We departed from Houston at about 11:20 am, and arrived in San Jose in the early afternoon.

Costa Rica is very beautiful and very green. All the service people we have encountered have been very friendly and helpful.

After arrival we rode on a Costa Rican bus and arrived at Hostel Bekuo. I'm looking forward to tomorrow when we can meet our host family. In the meantime, time to rest and unpack.

(Sorry - not successful at this time in sending pictures)

Orientation today

2007-06-20T22:00:00.000-05:00

Tonight we had a long orientation in Houston with our MIUSA group. The group of 12 delegates is a diverse one – ethnically and disability diverse and from throughout the United States. We’ll also travel with 2 group leaders, one who also uses a power wheelchair, and 2 ASL interpreters, and my personal assistant and one other personal assistant.

We played some ice breaker games and got to know each other a little bit. We talked about our feelings as we embark on this trip, each person’s goals, assistance each person might need, our agenda in Costa Rica, first aid, Costa Rican culture, and learned a little about living with a host family in Costa Rica.

Tomorrow is an early day as we catch a morning flight to San Jose.

Hasta la vista!

Off to Houston tomorrow!

2007-06-18T13:32:00.000-05:00

Yesterday, my church community blessed me and my friend and newly drafted personal assistant, Ryan, as we prepare to embark on MIUSA's Youth Leadership and Cross-Cultural Perspectives on Disability Rights Exchange Program. It's wonderful to truly feel their support.

And, I must say, I've been surprised that, unlike Christie, I haven't heard any naysayers about my going on this trip - a person with major physical and health impairments going off without his parents. Hooray!

Thanks again for the kind comments and words of support. I appreciate them.

Description of picture, which is a little dark and not too sharp - With Ryan to my right, we are near the altar and surrounded by a large group of family and friends as we are blessed. People have their hands on us or outstretched over us.

Two must reads on the "Ashley Treatment"

2007-06-18T13:18:00.000-05:00

Today I received links to two stories from FRIDA (Feminist Response in Disability Action). Since the American Medical Association's refusal to speak against the Ashley Treatment, FRIDA has been attempting to work with the AMA on the issue of human rights for people with disabilities. This coming weekend the AMA holds its annual meeting, and FRIDA will be there.

In "Doctors: Whose Side Are They On?" former Jerry Lewis poster child Mike Ervin explores why the medical community seems to have such a hard time seeing people with disabilities as people. He asks,

"How can so many of them attain so much education and remain so oblivious to the basic humanity of people with disabilities? Might there even be something about the detached manner in which they are educated that makes them more susceptible than most to disability bigotry?"

Mike asked Lisa Blumberg, a disability rights activist, her opinion and she said,

"I don't think doctors are instinctively more prejudiced than others about disability, but they are in a position to act on those prejudices since they have power over people's bodies. In addition, their view about life with a disability may be distorted because they see disabled people in settings where the focus is on what is 'wrong' with them and whether they can be 'cured.' It's a vicious cycle - doctors are infected by the prejudices of society, then doctors' prejudices become prejudicial practices which fuel the prejudices of society."

It's a must read. Very thought provoking.

FRIDA also sent the story, "The Other Story from a 'Pillow Angel': Been there. Done that. Preferred to grow." from Anne McDonald, a guest columnist for the Seattle Post Intelligencer. This is the story of a woman who has a story quite similar to that of Ashley X. She was abandoned and starved as a young child because of motor skills at the level of a 3 month old and a diagnosis of severe retardation. At age 18, she weighted 35 pounds and was 42 inches tall. She says, "

My life changed when I was offered a means of communication. At the age of 16, I was taught to spell by pointing to letters on an alphabet board. Two years later, I used spelling to instruct the lawyers who fought the habeas corpus action that enabled me to leave the institution in which I'd lived for 14 years."

Another must read. Check it out.

I wonder - how many people are there that are deemed worthless, but simply don't have a means to communicate? Of course, ability to communicate, level of cognitive ability don't matter on the issue of worth, because a person is a person. It's as simple as that - human rights are for all people.

Carnival Day!

2007-06-14T08:57:00.001-05:00

The theme of Carnival #16 is "Borders", and it's up now over at Pilgrim Girl. Jana starts by sharing a recent experience in her own life.

"A few months ago I was engaging in an online debate with some TAB friends who argued that the routinized abortion of fetuses with disabilities or genetic abnormalities should be encouraged. As I expressed opposition to their ideas, my well-reasoned arguments were soon abandoned.
'Are you saying that I should have been aborted?" I asked. 'That society would be better off without me?'

One of them responded: 'Well, not you of course. I never think of you as disabled. You are just Jana.'"

Jana reflects on this experience and her realization of "just how flexible the borders of disability are--the categories of 'normal' and 'disabled' bending and flexing to both include and exclude."

I haven't had a chance yet to check out the many links, but it looks like there's a fascinating collection, organized by Jana into these categories: Borders in Public Spaces, Defining the Borders of Disability, and Physical Borders. I look forward to some very interesting reading!

Preparing for the Youth Leadership and Cross-Cultural Perspectives on Disability Rights Program

2007-06-13T16:25:00.000-05:00

I'm having very busy week getting ready for my adventure to Costa Rica. I am making a list of all my needs so that Ryan, my personal assistant, can know my needs and feel comfortable with them. Although I have known Ryan for many years, this will be his first time working with me as my personal assistant. And, this will be my first time having an assistant other than my parents for an extended period of time.

I've been filling out a lot of paperwork from Mobility International. One aspect of the paperwork has been a very thorough assessment of my needs. MIUSA has a questionnaire with eight categories of disability (including an "other" category). Each category has its own questionnaire with highly specific and appropriate questions for each category of disability. In my years in the school system, I've never seen such an on target questionnaire.

I've also had a good experience working with the MIUSA staff. They seem prepared, flexible, and willing to work with me so that we can be creative problem solvers for the new situations that we will encounter.

I'll be traveling with 11 other 18-24 year olds who seem like very interesting people. I look for to meeting them and sharing this great experience with them.

Here's what the itinerary looks like:
Day One: Orientation in Houston
Day Two: Fly to Costa Rica. Spanish language and sign language lessons. Stay in youth hostel.
Day Three: More language lessons and group activities. Meet and stay with host family.
Day Four: Breakfast with host family. Language lessons. Explore San Jose. Dinner with host family.
Day Five: Free day with host family.
Day Six: Tour of rehabilitation center. Workshops. Dinner with host family.
Day Seven: Adaptive sports day. Dinner with host family.
Day Eight: Visit disability organizations. Dinner with host family.
Day Nine: Excursion to Volcan Poas. Community service activity. Dinner with host family.
Day Ten: Disability Rights Workshop. Visit University of Coast Rica. Dinner with host family.
Day Eleven: Free day with host family. Farewell fiesta with host families at Instituto Helen Keller.
Day Twelve: Travel to Parque Nacional Carara and stay in dormitory.
Day Thirteen: Trail restoration project and park discussion.
Day Fourteen: Trail restoration project and park discussion.
Day Fifteen: Travel to San Jose and stay in hostel.
Day Sixteen: Return to Houston with group, and then return home.

I plan on taking many pictures and sharing my experiences with my readers while I am in Costa Rica. Hopefully, I’ll have occasional internet access so you can follow me on my journey.

House Bill 1256 Update

2007-06-13T16:17:00.000-05:00

House Bill 1256 has passed both Illinois houses of Congress. It now goes to the governor and will be signed into law. Thanks to everyone who called or e-mailed their state representatives and urged them to support this important bill. This bill will allow people with disabilities to earn up to $25,000 a year and still be eligible for Medicaid. For many people with disabilities who have pain or low stamina, part-time employment may be a possibility when full-time employment is not.

I'm going to Costa Rica!

2007-06-08T13:42:00.000-05:00

You may remember that I was an alternate for Mobility International's 2007 US/Costa Rica: Youth Leadership and Cross-Cultural Perspectives on Disability Rights Exchange Program. I am so excited because I got a call that a spot opened up for me, and I'll be joining the group! I'll leave for Houston on June 19, then an orientation, then fly to Costa Rica for 16 days.

Lots to do to get ready on such short notice. I've been working on my neck pain and it is feeling better, but I'll be working for it to improve more over the next week.

Cool Links

2007-06-04T15:13:00.000-05:00

Last week, I did not get to blogging, and I don't think I'll get much blogging done this week either. I've been having neck pain (boy, can pain really sap your energy) and a variety of health care and college-related appointments. So, here are some links that I think might be of interest.

Paul Crichton is a computer expert who works for BBC Ouch Magazine. Paul’s goal is to make websites more accessible to people with disabilities. Last week, Paul interviewed me and invited me to share my thoughts about the Internet.

Speaking of the UK, Gojo is a new website, designed to help people with disabilities in England improve the quality of transportation to enhance their independence. Gojo is looking for suggestions from the public on how to improve the transportation system.

Here is a three-minute video from the Disability Rights Commission of the United Kingdom that shows what the world might be like if people were discriminated against for being able bodied. Sister Edith, from Monastic Musings, has a great Blogging Against Disablism Day post about this video.

Here's a new blog from the University of California Los Angeles about Pathway, a program that provides educational, vocational, and social experiences for people with mental disabilities. Thanks to Ryn Tales, for connecting me to this exciting program that will open doors for many students.

Disability Stories and The Media

2007-05-25T16:45:00.000-05:00

Yesterday, I heard on the radio two short pieces about young adults with disabilities.

The first, "Student with Cerebral Palsy to Graduate,” was on NPR's Morning Edition. A guest professor who had taught a class at the University of Delaware shared his experience of meeting a student and his mother.

After listening to this story, I felt compelled to write to NPR. I wrote,

“I am 21 years old and, like Sumner Spence, have cerebral palsy. I am so tired of the media’s portrayal of persons with disabilities and their families as either pitiful or inspirational. Both pity and inspiration are two sides of the same coin – the stereotype that people with disabilities are inferior beings; so either feel sorry for us or be inspired when we don’t match imposed boundaries and labels.

Why should a university professor be surprised that a university student would offer “sharp observations” and ask “smart questions?” Because of a wheelchair or weak hands? Not only do students with disabilities have experiences common to all students, we also have a wealth of perspectives shaped by living with our disabilities – perspectives that those who are able-bodied cannot possibly have, perspectives that can add to the diversity of intellectual discussions.”

This story was by no means as bad as those "feel good" sports stories where the kid with a disability is allowed to score a touchdown or make a basket. But I wrote the letter because people with disabilities cannot be respected as full members of humanity until society drops the inspiration/pity stereotype.

Last night, I heard the piece, "The Dog That Changed Her Owner's Life," on BBC Outlook. Hannah Baker, a 21-year-old woman who at one time could barely leave her house because of a seizure disorder, told how her life was changed by a service dog. I really liked how this interview was conducted, because Hannah shared her life experiences in her own words and the interviewer asked deep, thoughtful questions, seeking to understand the whole picture. Most importantly, there were no underlying messages of inferiority or pity or inspiration given to the listener. It was a fascinating story and the young woman’s disability was one part of it.

Disability Blog Carnival #15!

2007-05-24T12:45:00.000-05:00

Kathryn from Ryn Tales has put together a rich assortment of posts that cover family and many other topics. I found some new blogs at this carnival, which is very exciting!

Reflections on Self-Love, Self-Worth, and Family

2007-05-21T14:09:00.000-05:00

The 15th Disability Blog Carnival will be on the theme of family and disability. Able-bodied or disabled, all children learn their value from the people with whom they spend time.

From listening to the childhood reflections of others and from my own childhood experiences, I see that the young child with a disability is like a sponge, absorbing and internalizing the feelings and actions of family and caregivers. I've put together a composite of some of these reflections.

If I’m a little child I feel love and consequently, value when:

My mother's eyes, voice, and face light up upon seeing me, rather than becoming dark, dreary, and sad.

Even if I'm not able to verbally respond, my aunt talks to me using my name, rather than about me with impersonal pronouns as though I'm not there.

My grandfather spends time with me, telling stories rather than letting me sit alone in front of the television.

My uncle casually helps me get my jacket on so we can go the park, rather than making a big fuss like I'm slowing everyone else down.

My brother listens to me when I say, "you're treating me like a baby," and responds, "you're right, I'm sorry," rather than laughing at me or ridiculing me.

My grandmother enthusiastically greets me when I come to her house, rather than complaining about the work she had to do to accommodate my needs.

My father cleans up my drool or my dirty diaper with matter-of-fact simplicity, rather than shaming me about bodily functions over which I have little control.

My caregiver seeks to understand me when I ask a question, rather than becoming annoyed with me.

My stepmother holds me with a strong yet gentle touch making me feel safe and secure, rather than with a tentative hold leaving me to feel both dirty and frightened.

My young cousins follow the example of my inclusive adult relatives, finding ways to have fun with me, rather than giving up without even trying.

My godmother learns some sign language so she can communicate with me directly, rather than relying on my parents to be intermediaries.

My parents’ longtime friend rejoices in the fact that I exist, rather than talking about what a burden I must be.

My parents correct a neighbor who laments the hardship a disabled child must bring to their lives, and articulate my value, rather than list my needs and their fears.

The child's view of himself or herself is shaped by everyday life experiences and interactions. If a child with a disability feels loved, self-love and self-worth will follow.