The last few days I have been still. It is very hot in New York and I struggle to cope with the heat. Like it or not, I am part of an at risk group. I have multiple fancy apps on my phone that alert me about all sorts of things weather related. I even have special tones for particular weather alerts. Heat is in my nemesis. My autonomic system cannot adjust post spinal cord injury. I sweat little and my body just cooks as a result. This is dangerous and I am exceedingly cautious when venturing outside in the summer. I hate being still. I hate being trapped inside when temperatures soar into the 90s. I despise being tethered to any building or room that has air conditioning. And here is what bothers me the most: I feel vulnerable. I do not feel like I am in charge of my own life. As my son has observed, “Dad, for a paralyzed guy you sure do move around a lot”.
Since I have been sedentary the last three days my legs are tight as a drum. Movement is key for me. The less I move the tighter my legs become. In place of movement I have been thinking. I think a lot about disability as on hot days my body limits what I can do. The heat humbles me. When I am still my mind wanders. I worry about others who do not have the education, family support, and friendships that I have. I know too many people with a disability who live at or below the poverty line. I know that accessing appropriate social supports is difficult in the extreme and often involves humiliation rituals. On a day like today I bemoan the existence of disability. This thought is quickly dismissed for the next thought that pops into my mind is that I have been culturally hot wired to think disability is bad, something to be avoided. There is an element of truth in this. No one wants to have a disability. The corollary to this thought is the idea disabled people are the other; it is not me. That thought is deeply rooted. Thirty five years post paralysis I still wake up and think “What is that wheelchair doing in my room”. When this happens I laugh at myself and get on with my day. But that thought still exists in my brain and it is a big problem. It is not a problem for me but for every person with a disability. Disability in whatever form it takes is framed as having a negative impact on one’s life. This is wildly wrong and I go back to the mantra: disability is a social malady. Sure we people with a disability have different sorts of physical and cognitive deficits. In fact we people with a disability have always been present in the evolution of humankind. The evidence for this is rock solid. Talk to any archeologist and he or she will say the same thing, We humans are masters of adaptation. Disability is a very visible form of adaptation.
The core issue is that we people with a disability are hopelessly fragmented. I remind myself that we have not yet created a broad based movement. Yes, many disability related organizations exist. And yes they are active and doing the best they can in face of stiff opposition. But the disability rights movement has not just stalled it has come to a dead halt. ADAPT protests once cutting edge have become stale, predictable, and are completely ignored by the mainstream press. Assisted suicide legislation is gaining traction. Concepts such as post birth abortion, medical futility, medical conditions deemed incompatible with life abound and are discussed in and outside of the Ivory Tower. These are perilous times for people with a disability.
Okay the above is ominous. My mind is filled with doom and gloom. I tell myself to stop. We can do something. If humanity is capable of one thing it is change and change we must. Lives are at stake. This hit me like a brick today when I read Claire Roy’s post today at Life with a Severely Disabled Child. See http://severedisabilitykid.blogspot.com/2013/06/there-but-for-grace-of-god.html In There but for the Grace of God… Roy opening sentence stunned me:“I think that parents of kids with severe disabilities are the only parents in the known Universe who pray for their kid(s) to die before they do...or at the same time as they do.” This sent a chill down my spine. Roy teasingly calls people like me, scholars and activists fighting for disability rights, cognates. When I read Roy’s post I thought I have failed. I have failed to persuade people inside and outside the scholarly community that all people with a disability share a common bond. The bias and bigotry we encounter is radically different but the root cause is the same. Roy writes about her daughter Sophie’s future. She worries about what would happen if she lived in a group home. I worry what will happen if I get sick. Will some physician I have never met think I have suffered enough and allow me to die? Neither my concern or Roy’s are far fetched. In the state of New York one in five residents of group homes dies under mysterious circumstances. What no one wants to address is why does this happen. Why do people like Roy and myself worry? We worry because we know the system grinds us down a millimeter at a time. We are ground down at a glacial pace. On bad like today I think the system was created to crush people with a disability. On good days I am excited to part of the largest minority group in the nation. I want to go out into the world and make it better. Reality is somewhere in between these polar opposites. Roy wrote:
It's a harsh climate folks: requires a thick skin, strong mind and body. I am damn lucky where others are not...and for them, things fall apart very quickly in the land of disability. Often, the kid with the challenges becomes the proverbial, if not literal, punching bag.
Is this any excuse, in the end? No, not an excuse, but a big picture perspective. That's all I'm trying to say. We are no more amazing or inspirational or capable of doing this job than anyone else, platitudes about God and plates be damned. We are just people, people who are products of a society that does not know what to do, really, with the "problem" of disability. We are the ones who have to break all the rules and come up with new ones, and we don't always have what it takes to do so.
And that's why, in the end, it's the whole of society that has to change and embrace the reality of disability, so that good parents for kids with disabilities will be born instead of wrought...and over-wrought.
I envy Roy’s passionate writing skills. For better or worse, I am about as subtle as a brick thrown through a plate glass window. A friend one teased me that I piss people off in an unconventional way. This assessment is correct. It is why I quoted the above words by Roy. We simply do not know what to do with the “problem” of disability. In a world of tweets, email, sound bites on the news, and Facebook posts disability is ill suited for superficial analysis. To get disability requires time, energy, and restructuring all of what one was taught. Many feelings are going to get hurt if we people with a disability are ever going to become equal and free of bigotry. People who have dedicated much time and effort to support people with a disability will be hurt. That is those that have worked hard within a charity model of disability will be offended by the civil rights approach. Researchers who dedicate their careers to cures for a host of conditions will be hurt (people like those involved in the exoskeleton or stem cell treatments). It pains me to know my words hurt others. I lose sleep over this. But like Roy I have developed a thick skin. More importantly lives are at stake. Here in the United States, and to a larger extent in Britain, people with a disability are under assault. The so called social safety net is being dismantled by the far Right and Tea Party extremists. This is framed in strange and despicable ways. Read what Rick Santorium has written about the United Nations Convention on the Rights of Persons with Disabilities if you doubt me. Nothing he has stated is close to the truth. See http://www.thedailybeast.com/articles/2012/12/05/santorum-un-disabilities-treaty-would-ve-had-bureaucrats-unseat-parents.html
Take a good look at how Santorum had his child Bella in the background and used her as a political prop. I see this picture and seethe with rage. My rage is not about me. It is about all others—any other with a disability who encounters needless bigotry.
The above is in a way a plea. A plea to all those with and without a disability who want to help create a social revolution. As Roy noted we need to look at the big picture. Changing the big picture requires lots of people if not the vast majority of the population. But I believe in change. History has repeatedly demonstrated that mass movements and civil disobedience can create rapid social change. I consider Roy’s words forward thinking and this cognate crip considers her a fellow soldier happy and willing to fight the good fight. I just hope we do not go down in flames and will harken to the past and the famous line uttered during the Apollo ixii crisis: failure is not an option.