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Thursday, April 30, 2009

Ableism and A Water Shed Experience.

I do not like to use the term ableism. There is more than a bit of irony in this and a good friend pointed out recently that ableism is the first entry in the ABC-CLIO Companion to the Disability Rights Movement edited by Fred Pelka. For those unfamiliar with this book it is an invaluable resource. I consult it often and the first entry, Ableism, begins: "Ableism is that set of often contradictory stereotypes about people with disabilities that acts as a barrier to keep them from achieving their full potential as equal citizens in society". What a great start to an encyclopedia type text devoted to disability rights. Yet, this does not address why I do not like the word. As I thought about writing this entry today, the day before many celebrate May Day, I told my son I was struggling with how to address ableism. Far from a diplomat, he replied "Dad, ableism is a stupid word. Nobody aside from people who know a lot about disability will have any idea what you are talking about. Those people are not the one's that need to understand what ableism is". Leave it to a teenager who thinks he has the answer to the world's problems to get down to brass tacks.

While I may not like the word ableism, I certainly was taught what it meant at a young age. In fact, I was taught what ableism means by mother within months of being paralyzed and well before the word existed. Thus when I think of the word ableism I think back to the days when I was a newly minted crippled dude. The year was 1978. I was 18 years old and had just emerged from a ten year medical odyssey that left me paralyzed. I did not have a clue as to which end was up. I was struggling to figure out how to drive with hand controls, take care of my paralyzed body, and return to what I expected to be a normal existence. It did not take me long to realize that a normal life was out of the question. This left me confused and I had a tendency to avoid social interaction and anything that resembled a confrontation. I was also worried about returning to school where I had been known as the kid that was always really sick and upon my return became the kid that used a wheelchair. I was not pleased and felt more than a little sorry for myself. This bring me to the point of this entry: my mother taught me to confront ableism head on.

One day I drove myself to high-school in my parents car and discovered there was no handicapped parking. When I got home I told my mother about this in a woe is me fashion designed to prompt sympathy. This went over like a led balloon. My mother told me in no uncertain terms that rather than whining about the lack of a parking spot for handicapped people I should do something about it. I replied, "Yeah, what can I do I am just a student". She told me "Tomorrow I want you to drive to school and park in the principal's parking spot. If he has a problem with this tell him there is no handicapped parking. If he gives you any grief call me and your father". I was in my first period class when the principal walked in the door and asked "Who is William Peace and why is his car parked in my spot". Stunned silence ensued, I turned red as an apple and was asked to follow him to his office. I felt like a man heading to gallows and asked to call my mother. But then a strange thing happened. I told him exactly what my mother told me to say: "I parked in your spot because there is no handicap parking. The day before I parked very far away in the student lot and had a hard time getting to the only accessible school entrance". Hardly impressed but willing to listen I dug in my heels and questioned why handicapped parking did not exist. A few minutes later my mother walked in the door. She gave the principal a withering stare only a furious mother can produce that strike fear into the hearts of others. Two things dawned on me: first, my parents were behind me 100% Although I could no longer walk, I was still the same person. Second, I realized I had to assert myself. That morning I learned I might be the same person I was before I was paralyzed but my wheelchair radically changed the way I was perceived. My mother used the lack of handicapped parking to force me to acknowledge this fact and assert my rights. By assert my rights I mean she taught me to reject ableism. Sure I was paralyzed but schools and other institutions had no right to treat me any differently. Basic and what has become known as "reasonable accommodations" could and should be made. My mother told the principal she and her husband would encourage me to park in his spot every day until the school created handicapped parking. This matter was not subject to discussion and the sooner handicap parking was created the sooner this issue would be resolved.

What happened when my mother and I left the principal's office? I went back to class and my peers were awed by my audacity. News of what I did spread like wild fire. My social status was only enhanced the next day when I drove to school and discovered next to the principals parking spot was a newly established area designated handicapped parking. I became folk hero among my peers. I was the guy that not only had the nerve to park in the principal's parking spot but in less than 24 hours get the school to create handicap parking. This was a watershed moment in my life. When I saw my mother defend me and force me to assert myself, I knew I would never accept a subservient social status. I could independently manage my own life. If confronted with ignorance and bigotry I was the one that must demonstrate I had the same rights as any other human that was bipedal. In short, my mother liberated me from an ableist mentality. I learned in a tangible way to reject the ism that forms the heart of discriminatory behavior. Since that day so long ago I have had no qualms about confronting ableism, asserting my inherent civil rights as an American citizen, and rejecting ableist beliefs that sadly remain common place some thirty years later. Too bad we cannot clone my parents who were ahead of their time and knew the importance of disability rights before the concept existed. As one reader of this blog commented I am very lucky to have won the parent lottery.

Wednesday, April 29, 2009

Silence, ADAPT, and the Media

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.