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Saturday, December 26, 2015

Coming of Age with the ADA

A good friend sent me an article written by Will Reeve, the son of Christopher Reeve. The article was published in USA Today entitled "Reeve: Disabilities Battle is Not Over". Link: Will Reeve is correct--the battle for equal rights is far from over. Will Reeve considers himself part of the "ADA generation--an advocate to combat the invisible reality that we are far from delivering on the key principles of this legislation. And it is up to the ADA generation to engage in honest dialogue about the strengths and short comings of the ADA to catalyze change". Reeve goes on to quote his famous father, Christopher, who apparently said "It comes down to us. We have the power to make an enormous difference". Christopher Reeve did make an enormous difference. In my opinion he set back disability rights by a decade or more. Reeve, a Hollywood insider known nation-wide for playing the role of Superman, used  his fame and fortune for a singular goal--cure for spinal cord injuries. He was an inherently destructive one trick pony from the instant he was injured to the day he died. While his goal was laudable, the way he set about reaching that goal was to rely on a medical model of disability and effectively use pity to raise millions of dollars. The fund raising resulted in the creation of a multi million dollar foundation named in his honor. The foundation's primary focus on cure has not changed measurably. Disability rights gets short shrift.

It is ironic that I came across the Will Reeve article. My son Thomas Peace just posted on my blog  and was interviewed by Louise Kinross Link: My son and Will Reeve were unusual as children. In the late 1980s and throughout much of the 1990s men and women who had experienced a spinal cord injury were not deemed parental material. As my son wrote "we stuck out everywhere we went". To further the irony we lived a few miles away from Reeve. His son and mine played house league hockey and they were both avid New York Rangers fans. The similarities end there. I embraced a hard core disability rights perspective that was of no interest to Reeve and his foundation. The contrast between Reeve and myself was stark. After Reeve was injured in 1995 I felt sorry for him. Life as a vent dependent quad is hard, the adjustment massive. I thought in time the veritable light bulb would turn on and he would get that disability is primarily a social problem. I acknowledge the effort to find a cure for spinal cord injury is good but life is equally important as is advocating for disability rights. Reeve never got this. Worse he became increasingly desperate for a cure and catered to the lowest common denominator in order to raise money. He struck me as severely alienated from other people with a disability. I suspect he had no idea other people with a disability were appalled by his rhetoric for cure and had instead embraced a social model of disability. The divide between Reeve and the average person with a disability was starkly apparent in 1996 when Reeve gave a speech  at the Democratic National Convention. The main stream press was agog. Reeve was a saint. He was brave and the savior of all Democrats. Reeve was a champion of disability rights. Those who witnessed his speech at the convention openly weeped. The reaction on the part of people with a disability was the opposite. The disability press despised Reeve and considered his speech ableist. Reeve did note the importance of the ADA and disability rights but his words were fleeting at best. The man wanted to be cured! The crowd went nuts. The raw emotion was palatable according to Harriet Mcbride Johnson who was present. When she looked up at Reeve she saw an object and in Too Late to Die Young wrote "symbolically he's the object of devotion" and it was a "surreal". She looked up and saw "a ventriloquists dummy".

I watched that speech and my face was crimson red. I was angry. Millions of people saw the speech in which he had reinforced every negative stereotype about disability humanly possible. Worse, he was lauded and praised. Lost in the sea of praise was how isolated he was.  Paul Longmore wrote "Christopher Reeve launched the most subtle, pervasive, and insidious attack against disability rights and people with disabilities in recent memory". He did the same thing locally. I know because I witnessed just how callous and uncaring he was. As long as he got in the door, he was happy. Other people with a disability were of no concern. For example, his son and mine played hockey. At the time many of the local rinks were not remotely accessible. I was often forced to drop off my son at a rink and had no way of getting in to see him play. In contrast, Reeve received special attention and I saw him enter a rink while I sat in parking lot. This sort of privilege took place locally and at Madison Square Garden, the home of the New York Rangers. Thus I shook my head in disgust when Will Reeve wrote about a revelatory experience.

At a New York Rangers playoff game at Madison Square Garden this spring, I — accompanied by a friend who is paralyzed and uses a wheelchair — saw firsthand how accessibility has evolved over the past decade. When I attended games with my dad after he sustained a spinal cord injury, there was no seating for people with wheelchairs. Instead, my family would sit in folding chairs near the players' entrance, and we moved to the side when the Zamboni came through. It was all a major production.
This time, though, entrances were accessible. Elevators led us to precisely where we needed to go, and clearly marked signs directed us to the wheelchair-accessible section. A local restaurant nearby had a permanent ramp that led directly to a patio where we mingled with fellow fans. It was quite moving to realize how much easier it has become for people in wheelchairs to get around and enjoy the same experiences others take for granted.

A battle took place to make Madison Square Garden accessible. Reeve was not part of this battle. He was content to rely on his fame and have his singular needs accommodated. My son and I would have loved to have sat in folding chairs near the player entrance and move for the zamboni. Instead we sat in the aisle, there was no handicapped seeing until recently,  and were often forced to move six or seven times during a game because someone complained I was blocking their view. I had beer spilled over me by drunk spectators and ushers were point black rude. More than once I was told "just go sit in the bar, you are in the way". Madison Square Garden was and remains hostile to people who use a wheelchair.

The difference between my son and Reeve's son is clear. My son battled with me and we were always side by side. I could not be more proud of him. He got disability rights and pushed back from a very young age. Once when an elderly man told him "Some day you will have to take care of your crippled father" he responded by saying "You are an ignorant bigot". I will forever recall the look of shock on the man's face. It is not easy to be deemed a bigot by a little boy in first grade. When wheelchair lifts were put on MTA buses I was an EPVA bus buddy. The battle to put lifts on the buses was fierce. I was cursed at and spit on for using the bus lifts when they were first put into service. Christopher Reeve did nothing for disability rights. Indeed, during Reeve's post injury life he did nothing but antagonize people such as myself whose primary interest is disability rights. He was a disability rights worst case scenario. He was blithely unaware of all the means with which he engaged with society was created by the people he dismissed and belittled--disability rights activists. Instead, he wallowed in his fame and used his wealth to distance himself from his crippled brethren. Not once did I hear Reeve bemoan the lack of adequate access to mass transportation, accessible housing, and unemployment rates that have remained at 66% for decades.

Let's be clear about Reeve. He had no interest in battling for equal rights for people with a disability. He did not battle for the ramps and elevators he used. He did not battle to force hotels to have accessible rooms. He did not advocate for access in any way shape or form. He had one interest and one interest alone--cure. He was oblivious or simply did not care about others with a disability. I do not begrudge Reeve's wealth and fame. I consider his focus on cure for spinal cord injury unrealistic but worth while. But to suggest he was part of the battle for justice and disability rights is flat out wrong. While he was one of us he never connected with the disability rights movement or those who embrace an identity tied to disability. If there is tragedy involved in a spinal cord injury this is it; from the moment he was injured Reeve believed he was a class apart. He also created what I call the Reeve School of paralysis. In 2012 in a post titled "The Reeve School of Paralysis" I wrote:

the Reeve School of paralysis perceives disability to be a personal tragedy. A spinal cord injury is a personal catastrophe. Life is bifurcated. There were the golden years before paralysis when life was perfect and the tragic, compromised, and diminished life after a spinal cord injury. Reeve would "suffer" with dignity. He would show great courage in the face of a horrific tragedy. It helped that he was good looking and stoic. He played this part to perfection. But wait there is more! Reeve, thanks to his fame before his injury, became an icon. He was the perfect cripple. He was not like other paralyzed people who wallowed in self pity. He wanted to be cured. He dedicated his life to cure. He founded the Reeve Foundation. He lobbied on behalf of other paralyzed people. He embraced high tech medical care--care meaning research for a cure and emphasis on dubious clinical trials for cure. He became a cure junkie and for this he was beloved by all--all those that knew nothing about disability. Reeve cemented an antiquated perception of disability. Disability is a fate worse than death. It is a singular experience, a tragic experience. The "job" for all people with a spinal cord injury is to seek a cure to paralysis. No risk is too great. No procedure too risky. No amount of money is too much. No matter what the focus is always on walking. 

I do not care one iota about cure. Like my peers, I am too busy leading a good life. Again, the ultimate goal Reeve sought is a good one. But that is not going to happen in my life time nor in my son's lifetime. I just love life, the good and bad. I love my son. I enjoy teaching at Syracuse. I love to write. I embrace the family of friends I have made in Central New York. I want to help my son find work he enjoys. I want to see him mature and perhaps marry and become a father. I want to enjoy sports. I want to live to see the Rangers win a Stanely Cup and the Mets win a World Series. I want to cook good food. I want to drink rum and fine port. I want to get every last ounce of life out of my body. A paralyzed body I love and suits me. I do not care about bodily dysfunction. Believe me, my body reminds me daily about dysfunction and pain. I choose to enjoy what my body can do. To me, the focus on cure makes no sense. Such a focus misses the point of life. A focus on cure is to buy into the rampant ableism that surrounds us. I see a paralyzed man or woman and I think of all the things they can do. I see a person who uses a guide dog and think the team they form, human and dog, is the essence of human adaptation. I observe deaf people sign and I think of how Deaf culture is cool.I envy their language. I see an amputee walk by using a prosthesis and think the merging of technology and the human body is an inherent precursor to the future. I admire and respect those adapting to various forms of invisible disabilities such as Chronic Fatigue Syndrome. I respect those who are neurologically diverse and think about how fascinating the human brain is. You see, when I consider disability I believe it brings out the worst in society and the best that humanity can offer the world. I am quite proud of my crippled fellows. We are in the words of my son bad asses. 

1 comment:

Moose said...

The idea that we have to "fix" the disabled instead of helping them live a regular life is so pervasive.

I recently took part in a conversation about the organization Autism Speaks. People rushed to defend it until I pointed out that very little of gets spent on helping people (Charity Navigator gives them 1 out of 4 stars), but that much of it is spent on media that says that Autism destroys lives and families and is a burden to society. They don't want to help Autistics. They want to fix it and make it go away.

In another conversation, a business owner started complaining because he was "forced" to purchase a removable ramp for his front door which had steps. He insisted that his back door was perfectly usable "with a bit of help." Pointing out that if someone can't get through the door without help that means it is not accessible was completely lost on him.

And we've all heard the song that goes, "Why should I have to make changes for people who never show up anyway?" What's that? People in wheelchairs never come in to your shop with stairs out front? Gee whiz, I wonder why?

As long as society sees the disabled as some kind of "burden" and a "weight on society," it's going to remain an uphill battle.

But it's so hard to fight when often people don't want to listen. This summer a hotel chain discriminated against me for being disabled (and then lied about it, twice), and two attorneys and the Department of Justice all said, "Gee, that's too bad. Sorry. Bye!"