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.

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.

"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

Bang Long - gentle, tough, inclusive

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

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.

Another story illustrating why we need the ADA

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

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

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

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

And, again -

People are reasonable, we can work things out ourselves.

Nope. Not true.

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

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

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

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

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

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

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

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

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

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

More on the JRC and Aversives

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.

"The Argument Against Lifeboats"

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

Understanding the less common perspective: A Thanksgiving reflection

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

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

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

Here’s the final version of my English essay:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Telethons and Pity

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.

Ruben Navarro

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

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

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

Please check the link and learn the sad horrible details.

“…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!

My Costa Rica experience: A slideshow and reflections

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

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

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


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


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

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


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


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

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


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

Music on slideshow: Manu Chao, Me gustas tu

Two must reads on the "Ashley Treatment"

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

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

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

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

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

It's a must read. Very thought provoking.

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

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

Another must read. Check it out.

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

Disability Stories and The Media

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

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

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

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

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

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

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

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.