Tuesday, September 16, 2008

"Our homes, not nursing homes"

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

Sunday, August 31, 2008

Telethons and Pity (Repost)

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.

Friday, August 29, 2008

"Difference is an Artist's Game"

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.

Thursday, August 28, 2008

World Language Survey

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.

Thursday, August 14, 2008

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

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

Monday, August 11, 2008

Thunderous Dehumanization

3 polar bears, one disintegrating from a broken heart with the words, Sticks and Stones can break my bones, but words will really hurt me

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.

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

Wednesday, August 06, 2008

Not Today… I have an appointment…

a red desk calendar turned to the month of June, with the days x'd off

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.

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.

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.

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.

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!

Tuesday, May 27, 2008

Carnival Day!...A Bit Late

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!

Thursday, May 08, 2008

Carnival Day!

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!

Tuesday, May 06, 2008

Facing the mountain

The R Word Campaign

“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.”

Wednesday, April 30, 2008

Mistaken Identity

Blogging Against Disablism Day, May 1st 2008

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

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.

Sunday, April 27, 2008

Calling you: Blog against ableism/disablism!

Blogging Against Disablism Day, May 1st 2008
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!

Friday, April 25, 2008

Carnival #36!

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.

Friday, April 11, 2008

Carnival Time!

Disability Blog Carnival #35: The Hardest Part"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.

Sunday, March 30, 2008

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

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.

Thursday, March 27, 2008

Carnival time!

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!

Friday, March 14, 2008

Governor-designate Paterson

From the New York Times: 'David A. Paterson in his first news conference as governor-designate on Thursday, a day of busily preparing for the transition'

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.

Thursday, March 13, 2008

Carnival Day!

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!

Wednesday, March 12, 2008

Helen Keller photo discovered

photo of 8 year old Helen Keller, holding a doll and sitting next to her teacher Anne Sullivan
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.

Friday, March 07, 2008

Bang Long - gentle, tough, inclusive

Bang Long and I at the CCDI Conference May, 2007

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

Friday, February 29, 2008

Inclusive Theatre

Working Logo - large block letters WORKING with people on top of the letters showing different types of work 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.

Thursday, February 28, 2008

Carnival Day!

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!

Monday, February 25, 2008

Dave's Faves

Dave's Faves
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.

Sunday, February 24, 2008

Book Meme

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.

Saturday, February 23, 2008

Caught in the act!

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."


Thursday, February 21, 2008

Josh Winheld on Duchenne Muscular Dystrophy

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.

Thursday, February 14, 2008

31st Carnival!

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!

Tuesday, February 12, 2008

Man dumped out of wheelchair by police officer

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.

Monday, February 11, 2008

A positive employment story

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!

Saturday, February 09, 2008

Where is the outrage?

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.

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

"ADA Authors Rebut Critics of ADA Restoration"

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."

"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.

Tuesday, February 05, 2008

For parents: my cerebral palsy

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.

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 prone in the strollerknow 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.

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.

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).

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!

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.

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 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.

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.

Monday, February 04, 2008

Disability and God

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"

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.

Thursday, January 31, 2008

Steak 'n Shake apology

"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

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.

Wednesday, January 30, 2008

Support the ADA Restoration Act

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.