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

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.

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!

Kay Olson: "Anniversary--Escaping Institutionalization"

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

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

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

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

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

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

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

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

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

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

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

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