We all do it

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"

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.

"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.

Thunderous Dehumanization

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…

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!

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.

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

More on the JRC and Aversives

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

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.

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

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!

Another assault on human rights

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

Dave's Faves 1

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.

“…not this separate category of human beings”

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!

Discomfort at first sight

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.

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

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.

Protecting the Rights of Ashley X and Other Children

The Washington Protection and Advocacy System (WPAS) issued a report today on the results of their investigation of the "Ashley Treatment". (This agency investigates allegations of abuse and neglect of persons with disabilities in the state of Washington.) To read the full report of their findings and of the corrective actions required of the hospital click here.

"The sterilization portion of the "Ashley Treatment" was conducted in violation of Washington State law, resulting in violation of Ashley's constitutional and common law rights.

-The Washington Supreme Court has held that a court order is required when parents seek to sterilize their minor or adult children with developmental disabilities, and at the individual must be zealously represented by a disinterested third party in an adversarial proceeding to determine whether the sterilization is in the individual's best interests.
-Courts have also limited parental authority to consent to other types of medical interventions that are highly invasive and/or irreversible, particularly when the interest of the parent may not be identical to the interests of the child. Thus, the other aspects of the "Ashley Treatment" - surgical breast bud removal and hormone treatments - should also require independent court evaluation and sanction before being performed on any person with a developmental disability.
-The implementation of the "Ashley Treatment" also raises discrimination issues because, if not for the individual's developmental disabilities, the interventions would not be sought. Such discrimination against individuals because of their disabilities is expressly forbidden by state and federal law."

The WPAS explores why the violations occurred and states the corrective actions that Children's Hospital will take to protect the rights of children in their care. Some of those actions include: implementing "a policy to prohibit sterilizations of persons with developmental disabilities without a court order", implementing "a policy to prohibit growth-limiting medical interventions on persons with developmental disabilities without a court order", and including a disability rights advocate on the hospital ethics committee. The WPAS also states their plans to work with the public, health insurance companies, health care providers and disability advocates to improve services and supports for children with disabilities and their families.

Which Box?

We humans like to label, to stereotype, to box-in others to simplify our own lives, allowing us to avoid dealing with the complexity of each person. We delude ourselves into thinking that we know another person, when all we really know is the box that we created. Those of us with disabilities are boxed all the time - with labels such as “inspirational”, “tragic”, “brave”, “retard”, “cripple”, or "special". The labels, even the seemingly kind ones, serve to diminish who we are, limit our potential and our contributions, and take away our humanity.

Here’s a story of how someone put me in one box, then another box, and finally got rid of his box perspective.

Several years ago, we got a new choir director at my church. Tony was about the age that I am now, finishing up a bachelor’s degree in choral music at a nearby university. I had been singing in choirs at my church for about 8 years with the previous choir director. When Tony first came, he was overwhelmed by the enormity of the job. He had his hands full juggling his college demands and the full-time job of music director at a church where music plays a central role in liturgy. I imagine it was not easy seeing my wheelchair and cerebral palsy among the musicians. At first, Tony appeared very cold and distant to me, and I really didn’t feel like a part of the group any more. I didn’t feel wanted or respected. I knew Tony did not see me as a choir member, but instead saw me as a person who was in the way, a burden to the demands of his job.

I continued to sing, moving from the teen choir to the adult choir. Tony gradually became more comfortable with his role as music director and also with my place in the choir. We had many enjoyable conversations, and he got to know me as a person. He valued my contributions as a tenor in the choir, and little by little dismantled the box that he had put me in.

One Easter Sunday, it became apparent that Tony now had me in a new box. In the middle of mass, he spontaneously decided that the choir would sing in a different part of the church, a part that was not easily accessible to my wheelchair. Tony quickly directed the choir to follow him, and everyone but me, did. I stayed put, as I could see that the new location couldn't work for me. Tony started to conduct the choir for the song and saw that I was not there. His face registered “uh-oh!,” shock, and embarrassment. The choir sang the song, and everyone returned to their places.

Tony was intensely, humbly apologetic. He had forgotten that I use a wheelchair; he had seen me only as a singer. I had gone from one box to another box. I had gone from "disability" to "no disability", from "cerebral palsy" to "tenor". Different boxes, yes, but still boxes; boxes that simplified me as being only one thing and did a disservice to me.

A few years have passed since that Easter Sunday, and Tony and I have a great working relationship and friendship. He now seeks to understand all of me, asking me questions and getting to know me. Recently, he heard a guest speaker at our church naively stereotype people who use wheelchairs. He graciously offered to drive her back to the airport, with a mission to catch her ear on the subject of stereotyping people with disabilities. When he told me that story, I couldn’t help but smile. I have a lot of respect for Tony; it is not easy to stop putting people in boxes. I hope I can follow his example and unabashedly drop the boxes that I have that so limit the people I stereotype.

Description of picture: boxes stacked upon each other

"Why Our Perspective and Presence As People with Disabilities Matters"

Ruth, from Wheelie Catholic, writes of society's need to better understand and respect the perspectives of people with disabilities. She says that this understanding and respect is essential to real inclusion.

I know from my educational experiences that a major hurdle is getting an able-bodied teacher or staff member to recognize that I have a perspective that is likely unfamiliar to him or her. Of course, recognizing that people with disabilities have unique perspectives isn't even remotely possible if respect for our humanity doesn't exist first.

Hope on the Carousel

Alex, who is a few years younger than me, and I were both in our church’s children’s choir for several years. Now, Alex is in the teen choir while I’m in the adult choir, so we only sing together at Christmas and Easter. Alex is a senior at a Chicago public high school and plans to major in music when he goes to college in the fall.

Alex has a lead role in his school musical, Carousel. He plays the tragic hero, Billy Bigelow. Last night, several members of our church, including me, went to see Alex in his play. Alex had been enthusiastically talking about the musical for weeks and I was excited to see him perform.

Whenever I go out, I can't help but notice accessibility and inclusion. I don’t mean to obsess, but there is so much exclusion in attitude, policy, and practice most everywhere, that it’s hard to miss. But last night was unique.

When we pulled into the parking lot, there were many handicapped parking spots right in front of the entrance. We proceeded through the power double doors. When one of the power buttons wasn't working, a stranger went off to tell the manager. The high school auditorium was a modest size and had multiple wheelchair seating choices. Even though I was the only audience member in a wheelchair, it was refreshing to see such an inclusive attitude towards the diversity of potential audiences.

I comfortably settled in to watch the show. Alex's beautiful, strong, baritone voice and fine acting ability wowed the entire audience. He was fabulous! The entire cast put on a wonderful show.

And I loved that no big deal was made of the fact that the actor who played the romantic, male lead, Mr. Snow, had a visible physical disability and used a power wheelchair. The actor had a strong tenor voice, was a fine actor and was fully included in the show. His character romanced the female lead quite convincingly.

Of course, I am not at all surprised that a person with a disability can sing, act, and play a romantic lead. What surprised me was that the director used the most capable actor for the part, even when that actor would not typically be thought of in our society as being able to portray such a character. What's more, to the audience, it appeared effortless and natural.

I think that it’s really neat that Alex never told me, “Hey, David – one of the leads in my play uses a wheelchair.” It wasn’t a big deal to Alex – he saw me as David and his fellow actor as Joel. He never thought it relevant that we both use a wheelchair.

I was also struck by the audience’s genuine appreciation for all the actors’ performances. No inspirational mumbo jumbo. No phoniness. No pity. All the performers deserved and received hearty applause.

(The only evidence that I was still on planet Earth came five minutes after the show ended. The audience was filing out of the auditorium. A lady came up to me and told me what a wonderful voice I had. It took me a moment to catch what she meant. She thought that an actor had jumped off the stage into the crowd all while changing skin color, hair color, body type, physical impairment, wheelchair brand, and costume, and was now in front of her exiting the auditorium.)

I came home feeling encouraged and hopeful. Here was an experience that fostered real inclusion. This school gave its students the opportunity to see one and other as fellow human beings, each capable of hard work, talent, and even romance. These young people are future leaders, health care providers, business owners, and caregivers. Some have or may develop disabilities. They have been given the foundation of seeing people as people.

Description of picture: colorful carousel horse

Kay Olson: "Anniversary--Escaping Institutionalization"

Reflecting on the fact that the outrageous conditions faced by our veterans at Walter Reed Hospital’s outpatient facilities is similar to the conditions faced by many non-veterans every day, Carol Marfisi, from Disability Studies, says,

"What disturbs me is that the same deplorable conditions and substandard care and services are every day occurrences in the lives of many people with disabilities, as well as the elderly, who are living in nursing homes and long-term care facilities. The United States government is quick to covet credit as the world's most developed and advanced country yet under its very eyes, we see physical, emotional, and sexual abuse in these facilities."

Kay Olson reflects on her 1 year anniversary of “escaping institutionalization”. It is a powerful post. Please, please go read it. Without the diligent advocacy of her parents and rehabilitation staff, she would have fallen victim to the cavalier attitude of an insurance agent who wanted to place her in a nursing home unfit for habitation. Kay believes that had she gone to that nursing home, she would have died from respiratory problems or from some other cause.

Thank you, Kay, for sharing such a personal and painful story. I have learned a lot from you over the past 6 months about advocacy, dignity, inclusion and attitude.

I found Kay’s post upsetting for many reasons. Here are a few.

-The nursing home conditions she describes are appalling. They remind me of the conditions I read about in New Orleans’ nursing homes, the conditions that didn’t come to light until after we saw people abandoned with Hurricane Katrina.

-I am amazed at how “easy” it is for a person to be dumped, abandoned and discarded.

-I can see this experience being a possibility in my future.

-I have parental support. Kay has parental support. What about people who don’t have a support system in place?

-Kay’s story may be the exact situation that Ashley X’s parents were afraid of, a fear that led them to mutilate their daughter under the false assumption that she would then be “safe” from the horrors of institutionalization.

-Maybe this is how some people jump to the conclusion that euthanasia is a choice. The nursing home option seems to be saying, “Your life is worthless. It’s best for you to die, and we’ll give you a push.”

We need change! As a society our values and priorities, and the resulting allocation of resources are very wrong. Tragically, immorally wrong.

"It's not the disability, stupid"

Ruth Harrigan, of Wheelie Catholic, has another website called A Different Light with fiction, essays, and poetry about disability. In this essay, she writes about a valuable and thought-provoking conversation she had when she was newly disabled with a friend who had had a disability since birth.