April has not been a good month. Some readers may have noted a lack of posts on my blog. Three reasons account for this: First, my car is worn out after 120,000+ miles and had to be replaced. Second, the NHL playoffs are in full swing and my beloved NY Rangers were eliminated last night. Third, I am gearing up for summer school as I will be teaching two classes next month. Enough excuses.
ADAPT is at it again--the front line soldiers of the disability rights movement have been protesting and getting arrested in Washington DC. In the last few days I have received action alerts from ADAPT via email, press releases about the Community Choice Act, and read newspaper accounts about the protests. The net result is that I am deeply discouraged. ADAPT is desperately needed in the fight for equality--anyone familiar with disability knows the social, economic, and political inequities that exist are profound. We are without question the most disenfranchised minority group in the United States. We are as invisible as we are great in number. We are also too often out of sight and out of mind. Why is this case? In part, because there is a long standing tradition of warehousing people with a disability in institutions such as nursing homes. It is this legacy of institutionalization that has led ADAPT to make the passage of the Community Choice Act its top priority. Not only is this logical politically and socially, if the CCA is enacted it will save and improve the lives of many people.
ADAPT is protesting in Washington DC because President Obama has failed to push the Community Choice Act. ADAPT is correct, the Community Choice act does not appear to be of any interest to Obama. Obama supports the Community Choice Act but he has not mentioned the CCA in quite some time. On Monday ten members of ADAPT met with Nancy-Ann DeParle, Counselor to the President and Director of the WHite House of Health reform. I doubt this meeting went well. Based on my reading of various news outlets ADAPT has every right to feel the President does not care or simply is not committed to the Community Choice Act. This is quite different from his position during the campaign. When the issue of disability rights came up Obama frequently mentioned his support of the CCA. Thus ADAPAT activists such Bruce Darling feel like they have been betrayed. Another ADAPT members, Dawn Russell from Denver has stated her heart is broken. The pain of true believers can be hard to cope with.
The ADAPT protests are designed to raise awareness about the Community Choice Act. More generally, though, I see the ADAPT protests as being all about the failure of the Americans with Disability Act. The ADA has utterly failed to create equality for all Americans with a disability. At the heart of this failure is one simple fact--the average person, or to use a worn out line from the campaign, Joe the Plumber, does not understand disability rights are the equivalent of civil rights. This civil rights message forcefully promoted by ADAPT has not gained traction. Disability rights continues to be grossly misunderstood by the vast majority of Americans. Far too many see disability as a medical problem that needs to be solved by future cures for a myriad of diseases. The debate over stem cell research has not helped as it has only further muddied the understanding of disability as a social construct.
Clearly, I am pessimistic about the Community Choice Act in particular and disability rights in general. The mainstream media has used the concerted and determined efforts of ADAPT in Washington DC as a news filler. Ninety one people have been arrested and over 500 protesters have come to Washington DC. None of this has warranted more than a TV sound bite. The major papers have conspicuously ignored ADAPT protesters. Sure the Wall Street Journal picked up the story but it consisted of a single photograph and a blurb. I find this deeply troubling. A careful reading of the disability rights movement reveals one thing has consistently worked to generate change--civil disobedience of the sort that ADAPT undertakes. A great example is mass transit: where major demonstrations took place a lasting legacy is efficient and reliable access to mass transportation. New York and Denver are classic examples. Both cities have extensive and accessible bus service for people with a disability.
I spent much time thinking about ADAPT yesterday. I picked up my new fancy car. The hand control place I used in the past went went out of business and I was forced to find a different company. I eventually found a new, large, and very professional shop that installs hand controls, rents accessible vans, and other adaptive equipment so people with a disability can drive independently. I am pleased with not only my car but the installed hand controls. As I drove home and played with all the new electronic marvels I began to think about the waiting room. While I waited I saw lots of disability related literature. A diverse cross section of cars and vans can be modified and brochures of this type as expected dominate the office. But I also saw a few flyers for rehabilitation clinics, centers for independent living, spinal cord injury mentoring programs, adaptive sports, etc. What was missing? Not a single brochure, photograph, or framed news article mentioned disability rights. Nothing could be found about ADAPT. This absence of any information is a problem and it is a big one. I greatly admire members of ADAPT. They have and will continue to have an impact on disability rights. But I think that ADAPT needs to figure out how to touch a far broader base than they have to date. They need to branch out and connect with a host of different disability related organizations. It does not matter if these organizations are not as committed to disability rights as ADAPT is. What is needed is a much broader front so that more people with a disability and those without perceive disability rights as civil rights. ADAPT has done many things right: sending out emails, action alerts, twitter updates, news releases, etc. In fact the latest ADAPT Action Report contained high quality evocative photographs that I found put a face on disability. Yet I doubt more than one or two people at the hand control shop knew that ADAPT was in Washington DC protesting and sadly more than a few probably never heard of ADAPT. Until we, that is me, readers of this blog, ADAPT, Obama, my son, and Joe the Plumber equate disability rights as civil rights I worry that disability rights will remain on the periphery. The struggle for disability rights is too important to allow this to happen. We must all assert our rights and be active--to do our best and set our ideals that reinforce the belief that all people are created equal. By all people I mean those that can walk and those that cannot.
10 comments:
Thanks for sharing your thoughts about this. So few do understand the civil rights aspect of it.
Congratulations and good luck with your new car.
Wheelie, If disability rights are not framed and understood as being a civil right there is no hope for the future. There must be a way to accomplish this beyond what ADAPT does and disability rights scholars publish. I only wish I had the answer. And thanks for the good luck. I am a happy boy with a new toy.
Part of what needs to happen has to do with a broader understanding and acceptance of the social model of disability over the medical one. While disabilities are primarily seen as medical issues, disability rights won't be seen as civil rights. Rights (and laws) are social constructs, as are various forms of bigotry (or their justification). People will deny prejudices against people with disabilities because, they believe you can't be prejudiced against an illness or condition. What they fail to notice is that it's the people WITH that illness or condition that are being affected, and approaches like person-first language isn't quite getting the point across.
It's a chicken and egg problem though, since the best way of becoming perceived as real people, rather than our disabilities/conditions, we need to be more visible in the community, in the media, in daily lives, and not just around disability issues. But in order to make that happen, barriers to inclusion need to be eliminated, and we have to advocate for that to happen.
There are small changes happening, but it seems to be 1 foot forward, 8 inches back.
The other thing is that the media doesn't cover protests particularly well anymore; even things like anti-war protests and the like frequently get treated as filler. And it certainly doesn't help that ADAPT was up against the multiple exclamation point subject of a possible pandemic in the news cycle.
(A few people I know who live in the DC area say that they barely ever notice protests anymore, they happen so often. So maybe ADAPT needs to come up with other tactics, too.)
"The pain of true believers can be hard to cope with."
That's why you can't fall in love with a politician. You just can't. They're people, and people will let you down every time, even though they may not mean to.
Laura, I agree falling in love with a politician is fraught with problems. Almost all who become nationally known are inherently flawed. This is true of active and historic figures in my estimation.
Mia, Most people have no idea what a social model of disability is. This is a giant problem as medical and architectural or practical obstacles are not the central issue that prevent people with a disability from being incorporated into the mainstream. Yes these practical issues are a variable but I firmly believe most people don't get disability at a fundamental level.
As for protests, they are totally ineffective today. They are regulated, formatted, timed, televised and pointless. I gave up on protests long ago when I was a student at Columbia as I saw them as media events. What we need is a new cyber approach and far more confrontational out of the box action. The best analogy I can think of is travel: 50% of the time I rent a car via Hertz and Avis they screw it up. The car is nowhere to be found when I arrive. Of course I get lots of "I am sorry" that does me no good. I point out to agents if they were really sorry and wanted to know why I am angry they should stop renting cars to all people for the same amount of time I am forced to wait. This never happens. But what if there was a way to make this happen? What if the general public was forced to be inconvenienced, forced to wait, treated with a lack of respect? What if the general public was forced to call a "special phone number" to purchase tickets to an event? What if the general public was forced to wait to enter a building until a key was found? What would happen in these instances? Perhaps there is way to force the average citizen to experience these routine forms of discrimination?
I wasn't aware of protests or ADAPT's activities, but then I'm not tied into them either.
I shy away from protests & groups I see as 'angry' & 'hostile.' I'm just not an angry person and do not like being associated with groups which seem to build on those emotions. But to be honest, protests in any shape or form are just not my calling, not my preferred mode of action.
For some reason, the word 'discrimination' feels very threatening. There is much emtotion tied to that word and using it invariably seems to elevate the tension in a conversation.
I often describe the 'inconviences' and 'lack of respect' situations that you note are similar to the 'separate but equal' scenerio. Or in our case, 'any access' means 'equal access'. It just isn't true. The end result is I feel like a second class citizen.
I too have no direct ties to ADAPT but I sure do have the utmost respect for their commitment to disability rights. Yes, some member of ADAPT are angry and hostile and use these emotions. Yet these people have every right to be angry and hostile having been abused socially and medically. For example, I too would be angry and hostile if I were forced into a nursing home because community based services were not available or I was placed on a waiting list with 20,000 other people.
As for the word "discrimination", it is indeed confrontational or threatening. I have found using discrimination effective because it underscores the seriousness of disability rights. I am painfully polite, respectful but firm when discussing access issues and disability rights. When framed as discrimination it is harder for the powers that be to perceive wheelchair access for instance as a choice subject to budget cuts. Thus I argue if the options for people with a disability are limited than the options for all others must be limited as well. This causes others to stop, think, and at least understand that the lack of access or "reasonable accommodations" are indeed discrimination.
As I mentioned, I am not a protest person. Given the way protests are regulated and reported about by the media I think they are ineffective. I only wish I had a better idea to as to how we can prompt social change.
I was on the Hill protesting with the black farmers the same day ADAPT was.
I saw many people in wheelchairs in the hallway in one of the House office buildings, and wished I could join them; I believe in both groups' causes.
Neither issue got much media coverage. Can we join together somehow?
Karen, Can we join together? Of course! Yes, yes, yes, and yes. The real issue is how. How does ADAPT unit with other activists? To date, no disability rights group or organization has formed a close tie with other and more powerful groups. I wish I had a clue as to how to make this happen. Until this sort of connection is made change will be painfully slow.
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