Nancy Mairs and Cripple Swagger

It was great sadness that I read Nancy Mairs died. When I heard the news I instantly thought of her classic essay "On Being a Cripple". Mairs essay is a classic piece in the small world of disability studies. I recall reading the essay when it was published and being enthralled. She wrote "As a cripple, I swagger". Like Mairs, I use the word cripple to describe myself and my people. I am a cripple. When I use this word typical others get very uncomfortable. My niece who works in adaptive sports was appalled when I self identified as a cripple. She looked at me with great compassion and said "Oh, Uncle Bill". I consider her the rock star niece of the family. Maybe it is because more than any other member of my family she gets disability. She does not like the word cripple for the exact reason Mairs myself and many others with a disability embrace it--the word makes typical others uncomfortable. The word stops people. It is easy to gloss over the words disabled and handicapped. The same can be said for special needs and special education. I want people to know I am a hard man. I am hard because American society is hostile to disability rights. The ADA is 26 years old and there is no social mandate to enforce the law. Worse, the ADA has been under relentless attack since the day it was passed into law. This December 60 Minutes just aired an irresponsible and wildly wrong attack on the ADA. I am sure it garnered good ratings and empowered ableist bigots to rail against disability rights.

As I have thought about Mairs death from enforced bed rest due to skin woes, I wondered why I am drawn to the work of so few people associated with disability studies. I have wondered about this for many years. Disability studies scholars are my kind of people. I should be enamored with the field. This is not the case. I find the field insular. I am a rarity in disability studies and bioethics in that I have a Columbia University PhD and long track record of publishing essays in host of peer reviewed journals. So what is my problem with disability studies? Too few scholars want to change the cultural landscape. People with a disability remain marginalized in great numbers. We are also unemployed in most cases. We are not remotely equal to typical others. No doubt the law is on our side but typical others consistently frame disability as a medical problem.

When it comes to disability, history demonstrates effective change takes place via direct confrontation. Far too few in the field of disability studies are willing to be confrontational. Far too few push back against rampant ableism in their work and life. I read many fine theoretical texts in the field of disability studies. They are a challenge and intellectually stimulating. They will earn young scholars a tenure track job but I often find myself wondering how will they empower your average person with a disability? Not at all. With Trump as president elect, every vulnerable population is at risk. I am worried about myself and health insurance. I am worried about a small wound that has forced me to bed rest. I cannot afford the wound dressings that will enable me to heal as fast as humanly possible. This will make my enforced bed rest last weeks longer than it should. I look at my wound every day and wonder why are so few scholars in the field of disability studies engaged with the real world struggles of your average cripple.

How does one change the cultural landscape? For Mairs, it was writing in a way that defied stereotypes. She was, as all humans are, a flawed person. She was diagnosed with MS at 29. Mairs struggled with depression. Maris wrote about what it felt like to feel suicidal. She wrote about being a "bad" wife and bad mother. She wrote about her husband's cancer and his infidelity.  She was not an archetype. She was not a super cripple. She was as flawed as the person standing next to her. She wrote "there are rewards for making the world physically and emotionally accessible to all people, including benefits that accrue to society as whole. The more perspectives that can be brought to bear on human experience, even from the slant of a wheelchair or a hospital bed, or through the ears of a blind person or the fingers of someone who is deaf, the richer that experience becomes". 

Like Mairs, I struggle with my body. My body is wildly dysfunctional and different. When she wrote "I am appalled by my appearance" I instantly felt a kinship. Unlike Mairs who "devoted an absurd amount of time and expense to its decoration" I have no such desire. While part of me is indeed appalled by my body, another part is proud of what my body can do. And here I know I am privileged. I can all my own body care. I am not physically dependent upon others and my life trajectory in every way is radically different from someone who needs help with the the ordinary.

Last night as I was reading Mairs memoir, Waist High in the World, I was reminded that we may celebrate those whose are physically perfect and wealthy (super models and professional athletes for instance) and what those perfect bodies can do those of us who are obviously imperfect and crippled can lead authentic and valuable lives. This is the heart of the problem with disability studies. There is a disturbing lack passion and engagement. Scholars care deeply about heir work. This I do not question but do they care about your average cripple? Do they care about a crippled person who has not been out of their house in years? Do they care that getting a properly fitting wheelchair can take years? Do they care I cannot access to basic health care is exceedingly difficult? Do they care that the mass transit system is difficult to access and para transit is inherently flawed? Do they care about the unemployment rate of 66%? Some do. Many do not. The privilege associated with the field is deeply troublesome. I go out of my way to be an advocate as well scholar because I have had a privileged upbringing and education. My advocacy has without question hurt my academic career. I know I am instantly dismissed from applying to some jobs because I advocate against assisted suicide legislation. The point here is that when the field of disability studies was created advocacy and scholarship went hand in hand. Today they are two very different worlds. Scholarship and advocacy can live in harmony. Some scholars have achieved this. Mairs did it. I am doing it. My deceased disability forebearers did it--people like Ed Roberts, Robert Murphy, Harriett Mcbride Johnson, Helen Keller, Mark O'Brien and many others whose legacy is largely unknown.

Only one thing surprised me as I read Waist High in the World. I forgot how nuanced her writing was on end of life, euthanasia, and assisted suicide legislation. Her words struck home as I am currently dealing with a wound that has made life come to an abrupt halt. What I have lost is a measure of control. I do not go anywhere. Others shop for me. I am without question dependent upon others. I will remain dependent upon others for many more weeks. I am isolated to a degree. Enter Mairs:

I want to be the one in charge of my life, including its end, and I want to to be able to enlist someone to terminate it if I choose "rational" suicide. I have a friend, a doctor whom I admire deeply, who has told me about assisting a patient, irreversibly ill and on a ventilator, to die. Listening carefully to the man's clear and repeated requests, calling together his family for their last goodbyes, administering a shot of morhphine to ease his passage, turning off the ventilator, remaining with him until he had gone. I would hope to find someone as brave and compassionate if I were to make a similar appeal.

Superficially it would appear Mairs is in favor of assisted suicide. This is not the case. To a degree the words above are a romantic ideal about the end of life. Written in 1986, much has changed. My students have no idea who Jack Kevorkian was. Today, a person's physician who has followed their care for many years is replaced by a hospitalist when admitted to a hospital. Continuity of care is absent in the name of efficiency. The point Mairs was making was about control. Mairs wanted a degree of control about her care and eventual death. She rejected any and all crusaders for euthanasia and assisted suicide. She identifies Dr. Death a.k.a. Jack Kevorkian as a crusader. She astutely rejected any advocate for assisted suicide because they are not looking after an individual approaching end of life but rather have an agenda. She also knew how physicians frame end of life as a failure.

Doctors despise disease, or else they wouldn't become doctors, and I have heard of those who couldn't bring themselves to tell a patient she or he had multiple sclerosis because the diagnosis seemed too horrible to bear. Isn't a doctor suffering from this kind of anxiety all too likely to tell me "You have MS? Of course you want to die! Here, let me write you a prescription so you can peacefully end it all".

Mairs knows, as do those who oppose assisted suicide, that all the safe guards in the world are inadequate. Mairs knows as do I that regulation cannot eliminate "subtle pressure to end a life perceived by others to be insufferable. If, ideally I ought never to to have been born, and if my dependent existence creates a burden on those who must care for me, then don't I have not merely the right but the obligation to die? How can I honorably choose  otherwise? 

What Mairs has eloquently done is to acknowledge what slick efforts to pass assisted suicide legislation seek to dismiss.

My concern is that these issues be confronted  in such way as to create a social climate in which people with disabilities perceive life to be an honorable choice. And that means sending the social message that disabled people are valued and valuable, precious even, by investing in, financially and emotionally, in institutions and practices that help them out.

We are not interested in helping people with a disability lead a rich and full life. Social supports come with strings attached. Worse, if you need social supports you are an economic burden on society. I know this to be true because total strangers on Syracuse city buses tell me so. Depend upon Social Security Disability leads to a life on the edge of economic oblivion. We have a president elect that openly mocked a reporter with a disability. Paul Ryan wants to repeal or revise the Affordable Health Care Act. What reigns supreme today is hate and ignorance. That is why people such as myself were shocked by the election. We people with a disability and other vulnerable populations are hated. Strangers hate me. Emboldened by a bullying president elect and republican controlled house and senate ableism is rampant. Hate crimes are increasingly common. I need not go on. Those who are vulnerable get the message.

Aside from my life coming to a halt, reading Mairs made me realize a harsh reality. It is likely I will get a wound that will not heal. That wound will require expensive care that will not be covered by health insurance. I have been down this road. In 2010 I had the support of my family and without their support I would have died. I no longer have any familial support. In 2010 I knew I was burning a bridge. I was completely and utterly dependent upon family for financial and physical support. I know I am on my own now. I can survive a few weeks but if I get a wound that fails to heal I will die. I will die because we as a society have chosen not to do what Mairs thinks should be done--provide adequate social and institutional supports to empower people with a disability the time to heal and eventually thrive. Grim thoughts as 2016 comes to an end.