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

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.

Man dumped out of wheelchair by police officer

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

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

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

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.

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

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

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.

Reflections: The "Ashley Treatment"

The “Ashley Treatment” has been on my mind and in my gut all week – from the comments on my blog, to the words of other bloggers, to the media coverage, in discussion with others, and in my private thoughts. Being immersed to this level has been painful, thought-provoking, and enlightening.

I come back to my firm belief in the dignity of all people – not a dignity based on race, gender, religion, country of origin, economic status, or ability, but a dignity based on shared humanity.

I regret saying that Ashley’s parents lost their dignity by their action. I believe that each person’s dignity is God-given, and not losable. Many commenters felt that they were able to put themselves in Ashley’s parents’ shoes and faulted me for my harsh words towards them. In my strong emotion, I said that Ashley’s parents did not have dignity – this was wrong.

Like her parents, I believe that Ashley also has a dignity that is God-given. Ironically, very few people seem to be able to put themselves in Ashley’s shoes. Given that 1 out of 5 people in America has a disability, and that most of us will have a disability at some time in our lives through illness, accident or aging, this reaction should be somewhat surprising. But, to me it is not surprising - because those with temporarily-abled bodies cannot imagine themselves with a disabled body. And this lack of imagination and even fear can have disastrous consequences.

I feel weariness and sadness that we live in a society where a parent feels that medically and surgically altering a 6 year-old’s body to deal with growth is their only choice; a society where medical and ethical professionals actively encourage this desperate measure, rather than actively and creatively encouraging modification of our social systems to provide practical, economic, health, emotional and respite support of their clients (both child and parent); a society where many are angry with those who bring such injustice to light.

Blue/Kay Olson, of The Gimp Parade, has a reflective post expressing her weariness

“because fear and hatred of disabled people hides in people’s hearts in the same way as sexism, transphobia and racism.”

Imfunnytoo at Did I Miss Something also addresses the

“unbelievably systemic fear of us and hatred of us and labeling of us and arrogance towards us that this has opened up.”

Writing from the Birmingham jail in 1963, the Rev. Dr. Martin Luther King, Jr. addressed the importance of bringing hidden injustice to light.

“Actually, we who engage in nonviolent direct action are not the creators of tension. We merely bring to the surface the hidden tension that is already alive. We bring it out in the open, where it can be seen and dealt with. Like a boil that can never be cured so long as it is covered up but must be opened with all its ugliness to the natural medicines of air and light, injustice must be exposed, with all the tension its exposure creates, to the light of human conscience and the air of national opinion before it can be cured.”

I have noticed in my own life, in my talks with peers with disabilities, and in my interviews for my project that each person speaks of experiences in which they have been dehumanized – sometimes in an obviously hateful and discriminatory way, but at other times in a more subtle, seemingly “nice”, but equally dehumanizing, way, as though they are more “special” than other children.
Andrea, from Andrea's Buzz, writes,

It’s hardly not a new trend. But this millennia-old attitude does a terrible disservice to disabled people everywhere to be cast as either devils or angels. It is dehumanizing, and removes us from our humanity, and thus our basic human rights.

Being disabled is seen as a condition so horrid that no one could imagine living a happy, (otherwise) healthy, productive life. Not despite the disability, and not especially with the disability or even because of the disability. Being disabled is a fate worse than death. It turns a person into a “toxic train wreck” or it’s “worse than cancer” (because a person with autism, unlike a person with cancer, has a normal lifespan). So horribly unimaginable is being disabled that euthanasia is often deemed acceptable and even an appropriate “solution” to disability.

It has been not very long since people with various disabilities (and other differences) were routinely institutionalized (unfit for being in human society), and often sterilized. A person could be subjected to forcible surgery for such eugenic reasons as being blind, deaf, epileptic, poor, of a native (aboriginal) race, of mixed races, alcoholic, having a physical deformity, cognitive disability or perceived mental illness. Had I been institutionalized as a teenager, my children might not exist.

Being disabled is also seen as a condition where a family is divinely blessed to have been given such a special child who is looked after by angels. I’m not slamming those parents who feel that their children are blessings, but rather saying that all children are such – having a disabled child in the family does not earn a person extra cosmic “brownie points”.

The angelic disabled person is not-quite-human, a tragic but romanticized virgin on a pedestal of virtue. Certainly not an everyday sexual adult; a female person should never do anything as inconvenient as menstruate. Like 19th-century women, the disabled are sometimes cast as cherubic, above the base animal instincts of men, and held in divine favor.”

…“An insidious side effect of freakifying the disabled as devils and angels is that it not only creates the disabled as Other, but it also does a great disservice to those who view themselves as nondisabled: it makes a person glad to be normal, and content to be average. It perpetuates the divisions and reinforces the dualities. With such positions, we can never create inclusivity.”

For those of you with no personal experience living with or caring for a person with physical disability, there are ways of doing many of the things that are difficult. For example, I, weighing about 140 pounds, have a lift that my parents use to lift me off of the floor. I also have a wheelchair that reclines and lets me change position to minimize the wear and tear of staying in one position for an extended period of time. When I was younger, I had respite workers. These were people that were paid by our community support services, chosen by my parents, who took me out for fun, while giving my parents a break. I enjoyed spending time with them, we developed a good relationship.

Dream Mom cares for her 15 year old son with physical and cognitive disabilities.

“I thought it might be interesting to share with you, a few final thoughts on some of the concerns or issues that Ashley’s parents raised on their blog. The purpose of this exercise is to help people who do not care for severely disabled children, and to add some questions and/or comments as food for thought. Certainly every solution has its benefits, as the parents pointed out, like removing her breasts so she wouldn’t get breast cancer, however because it is a solution with a benefit, doesn’t mean it was the best solution for a six year old…”

It’s an informative post for those unfamiliar with the daily living with a disability. Of course, each person’s disability is different, and ways of doing things vary, too. But, the point is, people do and have found ways other than surgery to address daily challenges.

And when we don’t have a ready solution for a family’s challenge, let’s look at modifying our systems, before rushing to modify people.

Is it OK to judge a parent’s actions? If parents mean well, is that sufficient to justify a community letting them do as they wish? Recently, a story was in the news looking into parents who caged their children at night, because they felt it was in their children’s best interests, and because they felt it was the only way for the parents to get a full night’s sleep. We periodically see parents before the judicial system when they, for personal or religious reasons, refuse to give their children antibiotics or other medicines. A community does have a responsibility to be a safety net for children and to look at out-of-the ordinary situations.

Here’s what Penny Richards, from Disability Studies at Temple U, says

“Sorry… but ‘Never judge these parents unless you live in their home permanently’ just doesn’t work as a bottom line for policy. In a community, there are basic standards of decency that have to override parents’ decisions when a child’s welfare is at stake. We don’t let our neighbors hurt, neglect, or endanger their children, even if they say it’s all about love and they believe it’s for the best. We make laws to prevent it. And a disabled child has just as much right to that community attention and protection as any other.”

I do believe that each of us has a responsibility for one another. Standing up for the rights of all is challenging. It feels daunting to me. But, Ruth, from Wheelie Catholic, eloquently observes that the challenges we have faced living with a disability have prepared us well.

“…those of us with disabilities are able dealers, resourceful as a matter of necessity as we have had to adapt to a world that gives us unequal treatment in areas ranging from its architecture to its social programs .

By setting and maintaining seemingly insurmountable obstacles, our society has instilled in us the very traits we need to face the discrimination it is so reluctant to admit. We are resilient, strong and courageous.”

… “We must wade our way through the current waters of change, always keeping in mind the greater common good for our next generation. This means keeping an open mind not only toward the issues at hand, but toward each other.”

Again, I apologize for my out-of-line disrespect for Ashley’s parents’ dignity, while I continue to stand for Ashley’s dignity.

I intend to take the many lessons I am learning from this experience back to my interview project, as I continue recording the personal stories of people growing up with disabilities.

A further note: Agree or disagree, I welcome all respectful comments. I will, from here on, be deleting rude, foul comments.

Modify the System not the Person

From the Disability Rights Education & Defense Fund:

"Benevolence" and "good intentions" have often had disastrous consequences for the disability community.

and

We deeply empathize with parents who face difficult issues raising children with significant physical and intellectual disabilities. However, we hold as non-negotiable the principle that personal and physical autonomy of all people with disabilities be regarded as sacrosanct. (my emphasis) For decades, parents, families, and the disability community have been fighting for this principle, and for community-based services for children and adults that make it a reality. Their advocacy led to enactment of state and federal laws in the 1970s that establish extensive rights to full personhood for children and adults with disabilities. These laws were passed to remedy our shameful history of abuse and mistreatment of people just like Ashley.

and

As parents and adults with disabilities, our experience demonstrates unequivocally that all people with disabilities can be an integral part of home and community, if needed help and support is available. It is not always easy to find home care workers who are competent and empathetic. Too often, we must fight to persuade social service and healthcare bureaucracies that help at home and appropriate equipment such as adapted wheelchairs and mechanical lifts are essential and fundamental to our autonomy. However, if these problems seem insurmountable, or cannot as a practical matter be surmounted, as Ashley's parents suggest, then it is all our duty to change the system so it works rather than find novel ways to modify people so that they will more easily "fit" a flawed system. (my emphasis)

And this question...

Where, we wonder, was the network of programs and services that exist in every state when Ashley's family decided the best option was to employ medical procedures that violated their daughter's autonomy and personhood?

And finally, they note the sad irony of the treatment of this child and the recent United Nation Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities.

You can read the whole statement from the Disability Rights Education & Defense Fund here.

A mother and father’s betrayal

Update: See January 15 post.

Ok. Here I go. I am tired of the profound sadness that is filling my head 24/7.

When I first heard about the “Ashley Treatment”, I was appalled. I checked out the family’s website. I was more appalled.

I have been reading insightful, articulate reflections* by fellow bloggers. My family and I have talked on and on and on about the situation. But, still, I had remained a little detached (not much!) and didn’t want to write about the topic. My interview project and my blogging have been fun, up until now. But, tonight, I have changed my mind.

Ashley has cerebral palsy. I have cerebral palsy. But, most importantly, Ashley is human. I am human. Ashley is me. I am Ashley. And you are Ashley, too.

Ashley’s “parents” are afraid that their daughter would grow physically to be a young woman. I am a young man. I have a severe disability. I cannot sit up by myself, I cannot walk, I cannot go to the bathroom independently, I cannot prepare meals, I cannot use utensils very well. I cannot wipe my own butt. I drool. I weigh about 140 pounds, I am 5’9” tall. I am uncomfortable spending a lot of time in my wheelchair, I prefer to lay on the carpet. My mom can no longer lift me off the floor; my dad can barely lift me off the floor.

I have been disrespected and mistreated at times in my life. My parents have always gone to bat for me and now, with me. What strikes me tonight about the “Ashley Treatment” and has brought me to tears is that the very people in all of society whom this child should trust, have betrayed her. When you grow up so dependent, so vulnerable, you need someone to love you wholly and unconditionally. The rest of society may disrespect you and put you down and make you think less of yourself and make you think you are not a human being, but your parents?! Your parents?! I am my parents’ child, they know that I am a human being. Not an angel, not a pet. And, I learn from them that as a human, I have human dignity.

Ashley’s parents have committed the ultimate betrayal. They have treated their daughter as less than human, not worthy of dignity. But the truth is, they have lost their dignity.




*The thoughtful, insightful reflections:
Blue/Kay Olsen: Ashley Treatment

Imfunnytoo: It begins with Ashley

Mary Johnson: Ashley’s treatment in the media

Penny Richards: Sigh

Dream Mom: Pillow talk, the debate over the Ashley treatment

Corey Silverberg: When disability gets in the way, stunt it.

Nufsaid: The Ashley Treatment

Wheelchair dancer: Human Rights

Ruth Harrigan: The Ashley Treatment

Updated-
Thirza Cuthand: I am not responsible for your discomfort

Disability rights are human rights.

On December 13, 2006, the United Nations General Assembly adopted the Convention on the Protection and Promotion of the Rights and Dignity of Persons With Disabilities. This document formally affirms the rights of people with disabilities as human rights. It aims to ensure that people with disabilities are full contributing members of society and to end the discrimination that the 650 million people around the world who live with disabilities experience each day. The convention includes such rights as education, health, and work for people with disabilities.


"Today promises to be the dawn of a new era -an era in which disabled people will no longer have to endure the discriminatory practices and attitudes that have been permitted to prevail for all too long,” said then U.N. Secretary General Kofi Annan. He had strong and insightful words about the treatment of people with disabilities throughout history. Annan urged all 192 member states to ratify the convention.


According to the U.N. News Service, the convention “provides that States which ratify it should enact laws and other measures to improve disability rights and also abolish legislation, customs, and practices that discriminate against persons with disabilities."
Starting March 30, 2007, countries can sign and ratify the convention.

Hopefully this United Nations convention will make countries think about the lives of their citizens with disabilities in this new year. It’s a good first step. However, just saying disability rights are human rights is not enough. It’s up to each country to fully embrace this important principle. Actions speak louder then words.