Thirty for Thirty on the ADA: Essay Four “Among”

Cover of Planet of the Blind....man and dog....

What do we mean when we say “thirty years since the ADA?” I think as disabled people we’re talking about a living document and not an artifact. There are three ways in which the Americans with Disabilities Act is not static and therefore keeps up with the times. One: it’s protections for people who lack the capacity to see, hear, walk, stand, speak, engage in normative modes of thinking (a phrase I detest) or who have invisible disablements (HIV, cancer, auto-immune conditions) are inclusive. AIDS patients were and are protected by the ADA though when the law was passed no one could have imagined this. Number one is connected to number two: disabilities are complex, often unforeseeable. The law makes room for this. Three: opponents may not like this, but the ADA says equal access means equal access and the law is strong enough to make it stick despite fierce and consistent objections from business groups, universities and corporations that have cried foul from the day President George H. W. Bush signed the bill into law. At thirty we can say the ADA is still very much alive and living with us. That’s the thing about civil rights laws: they have to be tough and equally imaginative. Diverse societies depend on imagination. Daily we see racist, homophobic, ableist, misogynistic, xenophobic people assert that critical thinking is for losers. This proves to be untrue in a nation of well written laws.

This leads to the sad truth that laws are not always enforced and can be subverted especially in provincial places. I recall in particular the ugly story of a blind woman in Iowa who was prevented from bringing her guide dog to a computer class “for” the blind. She filed suit in a local court which in turn saw no problem with the discrimination. I think of my late friend Bill Peace who was denied proper medical care at Yale University Hospital while attending a conference on disability. He had a heart attack. Because he was a wheel chair user they put him in a dark corner of the emergency room and left him alone for hours. I think you see where I’m headed: sectoral and isolated places still believe even thirty years after the ADA that it’s still 1910. I pick that date almost at random but it serves the purpose: the disabled were imagined to be fit only for the family’s tool shed or the asylum. In either case they were ignored. The ADA says we cannot be ignored. Plenty of people who do not currently have a disability think that having one is a monumental tragedy. When TV programs like “Dateline”feature a blind person they often say: “He was “Struck down” by blindness.” This old Victorian language still haunts every person with a disability.In his wonderful memoir “Moving Violations” John Hockenberry describes an encounter he once had with an airline hostess who, seeing that he used a wheelchair, opined that if she was in his shoes she’d probably have to kill herself. All people with disabilities can share stories like Hockenberry’s.

The ADA says our lives are worth living. Are disability lives not worth living? The long history of “abled” voices has said, and continues to say “no”–a “no” that has been complicated by pre-natal testing and divisive political rhetoric about the nature of what a qualified life really is. In 2005 the Terri Schiavo case demonstrated to disability rights activists that when it comes to protecting disability life, conservatives had more empathy and courage than neo-liberal Democrats (with the notable exception of the Rev. Jesse Jackson). The very idea that a disabled life is not a life at all depends both on the medical appropriation of curative utility (life with illness only possesses value in relation to its amelioration) and simple metaphor (disability understood as a ruined identity, see Erving Goffman). The dichotomies of spoiled identity have a long history on both sides of the Atlantic–eugenics, forced sterilizations, the “ugly laws”, institutionalization, and the Nazi “T4” mass murder of adults and children with disabilities. The pattern is one of distillation: disability, (post industrial revolution) is broadly conceived–has been conceived as economically unviable, hence lacking all capacity for the pursuit of happiness in the world of economic-biography.

The darker version of this is the resentment of social welfare (Hitler famously depicted people with disabilities as “useless eaters”). The utilitarian (Benthamite) position (Peter Singer) holds that the greater good of society must trump the needs of a minority in pain–”good” is understood as the potential for achieving pleasure. The Benthamite pleasure principle subborns life to economic life and forgoes the question of what constitutes individual autonomy when imagined outside of industrial labor. In turn it’s the right of the majority class, the “duty” of the majority class to debate the probable happiness potential and index of the minority. Many disability rights activists and scholars have pointed out the inevitable connection of Jeremy Bentham’s ideas (and Singer’s fealty to same) as the foundational principles of Nazism. There is truth to this because eugenics was driven by the principles of Bentham.)

The 21st century extension of disability as a cathexis of the utilitarian body and the medical model of physicality (that abnormality only has value in relation to its likelihood of cure) is now intensified by pre-natal testing. Mr. Singer would counsel parents to abort a fetus if its future birth would result in a child without arms and legs. In his view that child would have no likelihood of happiness and (more sinister of course) such a child would impede the greater happiness of society. Singer is no scholar of economies of scale or of their pre-history. The idea that a legless man might be a great singer or poet demands an appreciation of proto-industrial village life: the majority history of human kind. But enough of Singer.

A friend wrote me recently. She’s a young writer and a new mother of a little girl with a disability. She wrote because she’s experienced the insensitivity of her academic colleagues and friends who have opined that they couldn’t imagine raising a child with an intellectual or developmental disability. My friend has been shocked by the thuggish candor of these remarks. And by turn of the imaginative poverty of the conceptualization of a challenged life as no life at all. This is the marriage of utilitarian philosophy (absorbed through capitalism’s ubiquitous social rhetoric) and the medical model of disability which holds that physical difference without the prospect of cure is not worth enduring. We are living in creepy and reactionary times. And though I’ve been a life long liberal, I applauded the efforts of former Florida governor Jeb Bush to save the unimaginable life of Terri Schiavo. I’ve never felt any ambiguity about that. Perhaps my lifetime of nearly incomprehensible difficulty to live and stand among the able bodied has given me a strange capacity for steepened joy. Not an easy joy. Not a hot rod, drive your car fast joy, It’s the joy of living beautifully in the solitudes of challenge–something your average doctor or utilitarian philosopher can’t imagine because they don’t understand the vitality of pain.

So clearly part of our job is to help those who work in the public sphere and who have no experience of disability understand the vitality of lives that are lived in what I’m calling “the vitality of pain” because the phrase reflects rather accurately what all life is. 

Another part of our job is to make strong connections with groups and organizations that are leveraging the legislated rights of people with disabilities by insisting that states and municipalities live up to the Americans with Disabilities Act. The New Hampshire story above and recent developments in New York State offer some examples but there are more. 

The Justice Department’s recent comprehensive settlement agreement with the Commonwealth of Virginia resolved problems in the state’s system for serving people with developmental disabilities, including intellectual disabilities, and further resolved violations of the Americans with Disabilities Act (ADA). 

Under the ADA and the Supreme Court’s landmark decision in Olmstead v. L.C., individuals with disabilities have the right to receive services in the most integrated settings appropriate to their needs. The ADA and Olmstead require states to provide people with disabilities the opportunity to live and receive services in the community instead of in institutions.  

It’s clear that with sufficient stamina, persistence, and networking we can fight for the rights of people with disabilities. It is right to remember the words of Jim Ferris, a poet who often writes about disability from the experience of having a disability. He says: We are not signs,/we do not live in spite of/or because of facts,/we live with them,/ around them,/among

Among. If you are looking for a one word slogan that’s it. The ADA @30 is Among.

 

Author: skuusisto

Poet, Essayist, Blogger, Journalist, Memoirist, Disability Rights Advocate, Public Speaker, Professor, Syracuse University

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