"Difference is an Artist's Game"

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

"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

Facing the mountain

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

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

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

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

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

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

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

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

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

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

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

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

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

And, thanks to Andrea for this link: The “r” Word Campaign.

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

Mistaken Identity

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

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

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

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

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

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

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

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

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

And this inability to see is where ableism starts.

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

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

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

New to the blogroll

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

Here are a few additions to my blogroll:

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

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

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

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

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

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

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

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

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

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


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


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



Check out the blogswarm!

April 2 - Edited to clarify Ratify Now.

Governor-designate Paterson

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

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

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

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

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

Carnival Day!

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

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

Carnival Day!

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

Caught in the act!

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

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

Hilarious!

Josh Winheld on Duchenne Muscular Dystrophy

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

31st Carnival!

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

From the carnival:


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

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

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

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

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

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

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

It’s not easy to be me.

Emma says,

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

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

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

Disability and God

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

"Bob's House"

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

Carnival Day!

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

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.

Brent Martin, Rest in Peace

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

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