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Tuesday, May 22, 2012

NDRN Report: Devaluing People with Disabilities

This is Curt Decker, Executive Director of the National Disability Rights Network speaking on the implications of the Ashley Treatment. Today the NDRN released a fascinating document: Devaluing People with Disabilities. When I first read the document I was not impressed. In fact I wanted to take the document and fling it across the room. I thought to myself, what a wasted opportunity. Then a funny thing happened. I realized my initial reaction was largely wrong. Sure I would have taken a different approach. I would certainly not have used some of the selected experts. I absolutely would not have used a focus group of people with a disability. But so what--how many people will react this way? Precious few. It was then I realized the larger aim was more important than my detailed critique. The report forwards a position few consider to be a civil rights issue: disability rights. In this sense the report is a grand success. I also like the multi media release. Yes, you can readily access a pdf of the report at but you can also access videos of Decker and a group of people with a disability responding to the Ashley Treatment.

What struck me after watching the above video and reading the report is the fundamental divide between those with and those without a disability. To me, disability rights is fundamentally a civil rights issue. This is as obvious to me as is the need to breath. Unfortunately the vast majority of people do not equate disability rights with civil rights. Disability for most people is a medial problem and the notion of disability rights as civil rights requires a theoretical leap they are unable or unwilling to accept. Such a leap in logic requires one to disregard all they have been explicitly taught and absorbed about disability. The inability or refusal to consider disability rights as akin to civil rights is an increasing danger to all people--not just those with a disability. As Decker provocatively begins the report, somewhere in America people are sitting down and considering withholding life sustaining medical treatment from a person who has a disability. And why do these conversations take place with stunning regularity? According to Decker they happen "because the persons being considered are viewed as having little value as they are. They are considered not as fully human, endowed with inalienable rights of liberty, privacy and the right to be left alone--solely because they were born with a disability".  These are not only harsh words but the harsh reality I have lived with for 34 years. I will have much more to say about the report once I thoroughly digest the ideas presented.


Liz said...

Thanks, I read it and thought it was pretty good. It should be fairly accessible and understandable even to people who haven't thought much about civil rights and disability. At least I hope so.

william Peace said...

Liz, I worry about the way this report will be received. While I like it very much it is a hybrid document. On the one hand it advocates but on the other it is a scholarly/legal work. The balance between the two is razor thin. For a general audience it readable as you noted. I suspect bioethicists will not like it.

Phil Dzialo said...

When people in my family and my wife's cannot bother to visit or inquire about my totally disabled son , except on a very few occasions, in the past 14 years, a document like the one I read has little meaning or impact.
Society needs to stop viewing the seriously disabled as an abstraction...until that happens, all the words and laws and theses will amount to naught. Human empathy and compassion cannot be legislated or mandated; neither can a view of the disabled as full and complete members of the human community until they's just not today's reality. Sorry, this is a pessimistic response...

GirlWithTheCane said...

Read the report and blogged on it. I agree that the people that need to read it probably aren't going to.

william Peace said...

Phil, You are 100% correct--all laws and reports supporting disability rights mean nothing without a social mandate to enforce them. I am flying out west today. I feel like I am gearing up for battle. And why is this? The airlines and people I encounter flying do not care at all that I routinely face discrimination.
Girthwithacane, Read what you wrote. As usual you make many fine points.

A Caine said...

Regarding people with disabilities being seen as abstractions or not fully human, it's an interesting problem considering American ethos.

America worships the self made person. We're all supposedly to be rugged and all that. Of course no one is entirely self made. You benefit from the infrastructure built by others, the education system, health care system, etc.

Yet we've decided those social services don't make you less of a self made person. However it appears Americans consider disability related social services as things that make you less a self made person. That is what needs to change.

It is kind of an interesting catch-22. Signs marking disability related social services must of course be extremely noticeable so those with reduced sensory abilities can see them. The downside to that is that they are giant bright reminders to someone with standard sensor abilities, and it appears to many people they are bright reminders screaming "special treatment".

I think the attack needs to be two fold. First to change the mindset surrounding disability related social services. The second needs to be more subtle and streamline many of those services or accessibility points into normal life so it becomes normal to see people using them.

As an example, where I live bus drivers are taught to allows kneel the bus when they encounter a stop with a low curb. The reasoning is that it prevents boarding passengers from needing to signal the bus driver they need the bus to kneel and delay the boarding. So the kneeling of the bus isn't an event that makes all the passengers look up and stare. I'd argue the next step is to develop a system to deploy some kind of ramp on door open (you could have a cheap camera and microprocessor position the ramp). That way when we encountered a passenger who needed the ramp, everyone wouldn't look up to see the different person board with the wheelchair. If you make the event routine people are more accepting of it. If it is unique, it makes everyone look at the person and think "That person is different from me" and you risk them thinking "Not just different, but different in an inferior way".