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 disabilityrightswa.org 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.

A Glimpse into the Future?

I have been reading British newspapers with great interest the last few weeks. I believe disability issues as they are being played out in the British press maybe a precursor to how disability will be discussed in the American presidential campaign this fall. The British Disability Living Allowance has risen sharply in recent years and is being subject to extreme budget cuts. All people on Disability Living Allowance will be reevaluated. It is expected that 500,00 people will lose their disability benefits. This is the work of Iain Duncan Smith who is seeking to slash the budget. In Smith's estimation fraud is rampant and among the primary reasons why the Disability Living Allowance has increased. He thinks that there is a significant problem with lifetime awards. "Something like 70% had lifetime awards which meant that once they got it you never looked at them again. They were just allowed to fester". Fester? Seriously, fester? In defending his reforms, Smith used the example of a person who had lost a limb or limbs. He believes that once provided an artificial limb there was no reason for such an individual to receive a Disability Living Allowance. Smith conveniently ignores the rampant unemployment among people with a disability. 

What Smith is trying to do is not original. Think back to the 1980s and Ronald Reagan's role in de-instituionalizing millions of people with mental illness. Reagan did not do this out of the goodness of his heart but rather to save money and close institutions. In a British twist to an old story Smith is trying to cull the ranks of people eligible for the Disability Living Allowance. Like Reagan, he is doing this to slash the budget. Do not be fooled. A Girl with the Cane, a wonderful Canadian blog, points out Smith's efforts to mislead the public.  Fraud accounts for 0.5 of Disability Living Allowance but 30% of claimants will have their supports cut or eliminated. She posits is this not just a tad bit excessive? 

What is left unsaid is the belief people with a disability who receive Disability Living Allowances are sponging off the public. They are charity cases whose demands are excessive. They are, to use Smith's own words, a "festering "problem". The press wants to know who is to blame? First, and foremost cheaters. Those individuals who are not really disabled and take money away from those with a real disability. In the estimation of Christina Odone in the Telegraph, "Iain Duncan Smith Must Not Give in to the Disability Bullies" writes: "The system allows alcoholics and drug addicts take away from more than someone who's blind: it allows anyone to fake a back ache and stay off work, earning money as they do so". This too is an old story. Pit people with a disability against one another. Establish certain disabilities as inherently in need of charity while others are dubious at best. Blindness, deafness, paralysis, these are socially acceptable. Mental illness? This is inherently bad. Obesity? Sorry this too is bad. Not content to merely divide, Odone goes on to blast the people with a disability that are willing to defend themselves. She wrote Smith:        

is taking on a powerful and often extremist lobby. He got a taste of the uproar to come a year ago last Saturday, when hundreds of disabled marched and rode in wheelchairs in protest in central London. Organised by the UK Disabled People's Council and the Disability Benefits Consortium, the "Hardest Hit" protest marked the first anniversary of the Coalition government. Some threw fake blood on the pavement, others wore gloves to show, as they told the BBC that the government cuts had cut off their hands. Hard-hitting stuff � and more is sure to follow with IDS's defiant stand in today's Telegraph: he will not be derailed from reforming the disability benefit system. The system clearly needs radical changes...Yes, there are many who are truly disabled; but some are milking the system. Even the BBC, in a memorable Panorama, began to investigate "Britain on the Fiddle", finding that benefits claimants were sailing yachts and driving Bentleys.

Please show me the people with a disability that are sailing yachts and driving Bentleys. The disability activists I know are living on shoe string budgets, barely able to survive. And what happens in this country when they fight back? Well, if you are a member of ADAPT and you take an action like they did last month in Washington DC. 76 people get arrested including a woman, Martina Robinson, I once taught at Purchase College. She is a member of ADAPT and lives in Massachusetts. As of today, she is being required to appear in court. It will cost her $367 to get to Washington DC by train. A night in a Washington DC hotel that is accessible will cost about $200. Robinson may be forced to spend $567 to defend herself. Like other members of ADAPT she cannot spare that money she uses for luxuries like rent and food. I call this economic abuse and intimidation. But in Odone's estimation Robinson is a disability bully. I suggest Odone spend time with Robinson, a member of ADAPT for 16 years. Robinson is not driving a Bentley or sailing in a yacht. Instead, she is fighting the good fight. She is fighting for herself but more than that she is fighting for those who cannot escape a nursing home and live in the community.         

Powering the World Leaflet

 

A leaflet on Welsh business archives is now available. 

It shows family and local history researchers what they might find in business archives and demonstrate that business archives can be worthwhile and original primary sources for students and academics. 

 

It also has a broader aim of encouraging Welsh businesses to view their archival records as an asset and persuading them to communicate with local archive services for advice on maintaining or depositing them. 

It is 10 pages (5 English, 5 Welsh on reverse) and has a print run of 3000. Copies will be forwarded to archive services, and more widely, over the next few weeks.  

Taxis New York City Style

I hope Mayor Bloomberg sees this video. This is an accurate assessment of the taxi situation in New York City. A person that uses a manual wheelchair has a chance to hail and enter a cab in the city. It is not easy but possible. A person that uses a power wheelchair is screwed as this video shows. I rarely take cabs in NYC. When I do I have a friend hail the cab--a friend that is bipedal and well dressed. I hide between two parked cars. When I emerge from between the parked cars my friend opens the rear door and then moves to stand in front of the cab so he cannot drive off. The result is I am able to ride in a taxi with a driver that will either be silent the enter time or will berate me the entire drive. Yes, this happens. This is why I use the MTA bus service which is reliable, though slow, and the majority of drivers polite and actually know how to use the lift. Still you would think I should be able to hail a cab like I do in many other cities across the country. Mayor Bloomberg should be ashamed--ashamed he is knowingly violating the law. If the Taxi of Tomorrow that he is backing with all the power he can muster is put in use I know I will not be able to use a NYC taxi for the next decade or more.       

Chen Guangcheng: Bad Ass

Last week my son sent me an article from the Huffington Post about Chen Guangcheng. He was following the news about Chen Guangcheng, the Chinese activist, who he described as a being a "bad ass of epic proportions". Why was Chen Guangcheng a "bad ass of epic proportion"? In my son's estimation he was a real life Rutger Hauer as in the Grade B 1980s movie Blind Fury. I am not a fan of this movie. We watched it together a long time ago. After the film I explained to my son why I had serious reservations about the content. I explained it was based on a faulty premise and followed a well worn super cripple belief used throughout film history. My son listened politely and said "Dad, its just a cool movie, you know the suspension of willing disbelief and all that stuff". 

I was reminded of this exchange because in the last week dozens of stories about Chen Guangcheng have appeared in nearly every news media outlet. As I hoped, Stephen Kuusisto has chimed in at Planet of the Blind and is quoted in a very good article by Alan Greenblatt. Greenblatt notes that central to all stories about Guangcheng is the fact he is blind. He wonders if Chen Guangcheng is in the news because of his activism or because he is blind. This is a damn good question. Kuusisto is quoted as stating "His blindness did not give him any particular bravery or insight. It is just a factor in a much larger life". I completely agree with this statement. Predictably tabloids have had a field day as they are prone to when it comes to any sort of disability.  I perceive no change in the way Chen Guangchang is described--there is always a reference to the fact he is blind. Kuusisto is quoted as noting "Blindness stands as a kind of metaphorical intensifier. The cleric [Omar Abdel Rashman the so called blind sheik] is angrier than other people because he is blind. In that way Chen is more miraculous and heroic because he is blind". This is in part exactly why my son was so enamored with the movie Blind Fury. Rutger Hauer was not an ordinary bad ass. He was an epic bad ass because he was blind. Chen Guangcheng is no ordinary activist, he is as Kuusisto observes a miraculous and heroic activist.

When people I know, and the many I do not know, note my assessment of how far people with a disability have come in terms of disability rights is inherently negative stories such as Chen Guangchang come to mind. Have we made any progress since the 1980s--progress here in a cultural not legal sense? Legally yes culturally no. Many laws exist that are designed to protect my civil rights. On bad days I think there these laws are useless because there is no social mandate to enforce them. I am distressed by people in positions of power who hold an antiquated view of disability. Here Mayor Bloomberg comes to mind and his all out effort to have the so called Taxi of Tomorrow approved in spite of the fact it is not accessible. Bloomberg is simply one of many that think providing basic and what are known as "reasonable accommodations" is a matter of choice not law. And this is the real problem, American culture--something Robert Murphy noted when he wrote the Body Silent. In short, progress is taking place but at a glacial pace.