Reporting from a Thicket of Yellow Roses: Supporting People with Disabilities in the Public Square

I will be speaking on Friday at the annual conference of the New York State Association of Community and Residential Agencies. 

Here is what I plan to say: 

One night many many years ago I went out and lay down in a thicket of yellow roses. The roses were in the garden of the Prado museum in Madrid. I lay among the flowers on an ordinary day, a day of overcast sun and businessmen hurrying and tall balcony windows shuttered and the streets with creeping taxi cabs. 

I had gone alone to the museum because my Spanish friend could not come with me. I was too blind to see the paintings very easily. How do I explain this? Why would a person with an occluding disability undertake a solo hunt to the world of paintings? Here are some answers, offered in no particular order of importance:

•  I wanted to see paintings–up close I might have an experience of Goya.

•I thought there might be some kind of tour guide who could describe things.

•I imagined that my passion for life would be equalled by the world: a utopian position that all persons with disabilities must maintain. 

The more I think about it it’s answer number three that motivated me. I thought that my desire for an inclusive life would in turn open the world before me. And I still get up every day imagining this. 

The Prado museum didn’t have any special accommodations for visually impaired people. So I began walking around. How simple that sentence is! I began walking.  

But there were thick ropes in front of the famous canvases. And sinister guards. And I walked from one gallery to another seeing nothing of the art. I saw beautiful mud colored walls and little high intensity lights and then I found myself trailing a group of American tourists who were being led by a woman tour guide. Frankly I felt like a man who had been walking down a mountain on a dirt road. And after great solitude  I’d found my people.  The tour guide was explaining something about Velasquez. How he used perspective–I don’t remember any more.

What I do remember is the overt cruelty of the woman tour guide who, seeing me trailing her group, chose to confront me by saying, in effect, that I was not part of her group and I should immediately get lost. 

I ran from the museum and found my way to the circle of yellow roses and I wept. I cried because I was tired; because I had a disability for which I had only the most apologetic language; cried because I had no allies–my host in Spain had no time for my disability, he was tightly wound and fighting his own battles. And this is what I’m getting at: disability is always and I mean always a problem of imagination. How will I live? How will I belong? What will I do? Who will accompany me? Who will wait on the slope and cheer me on? 

We are the people who stand on the slope and cheer. That is why we are here today. We’re  here because there are lives in the balance.  

Again here are some thoughts in no discernible order:

• People with disabilities, especially invisible ones–need self-affirming language. No language, no dignity.

• In tough economic times, we must, as professionals, do everything in our power to express and reaffirm the unbreakable connection between disability rights and all civil rights.  

•  Borrow from the disability rights movement: nothing about us without us. We must sit at as many tables as possible. The dignity of our friends, clients, and allies must not be compromised through the passive acceptance or adoption of mediated language.   

The latter is incredibly important. When politicians hold the lives of people with disabilities in the balance there is room for the extravagant misapplication of social language. 

When President Obama recently called the GOP budget plan "Social Darwinism" I think he told the truth. People with disabilities, the elderly, the very poor rely on Social Security Disability benefits, Medicare, and Medicaid, and by "rely" I mean to say (and let's be clear) these programs keep people alive. 

I can testify in this matter: in the 1990's I spent two full years entirely unemployed. I owe my life, quite literally, to Social Security Disability payments, Section 8 housing vouchers, and Food Stamps. I was able, with luck and persistence, to find a job and return to the tax rolls. I owe a good deal to the very social programs that Paul Ryan is aiming to eliminate. I've also more than paid back what those programs spent on me over the past two decades of successful employment. But I digress. 

The idea that the sick and weak are not the obligation of the strong is one part of the historical misapplication of Darwin's theory of evolution, but the meaner aspect of this is the idea that the vulnerable in a society destroy that society. Forget that our military industrial expenditures are the greatest government welfare scheme in all of human history, forget that the perpetual warfare state has destroyed our nation's infrastructure, our schools, our freedoms–it's the poor who are doing the most damage to this country, didn't you know? 

The dishonesty of the Ryan plan comes from its repositioning of the social safety net away from Washington and into the hands of the states–it sounds reasonable until you discern that the states (already broke) can take the diminished block grant money from DC and use it any way they like. This is not sophistry on my part. The Ryan plan would really unplug Grandma. Really. And in light of this the president told the truth. The truth will out.

Here’s some recent news:

 

From the Concord Monitor:

"The federal Department of Justice has joined a class-action lawsuit that accuses the state of cutting community mental health services and instead needlessly institutionalizing people at the state hospital and at a home for the elderly.

The lawsuit was brought in federal court in February by the Disabilities Rights Center against Gov. John Lynch and state Health and Human Services officials. It alleges the state has repeatedly violated the Americans with Disabilities Act by exiling the mentally ill rather than treating them in their own communities.

In announcing the decision to join the case, John Kacavas, U.S. attorney for the District of New Hampshire, said the state responds to people in mental crisis by forcing them to spend days at local emergency rooms until they can be brought to the state hospital, sometimes by the police."

 

(New York Times)
March 28, 2012

ALBANY, NEW YORK– [Excerpt provided by Inclusion Daily Express] Nearly 300,000 disabled and mentally ill New Yorkers face a "needless risk of harm" because of conflicting regulations, a lack of oversight and even disagreements over what constitutes abuse, according to a draft state report obtained by The New York Times.

In 2010, the number of abuse accusations at large institutions overseen by the State Office for People With Developmental Disabilities outnumbered the beds in those facilities — a sign of trouble in buildings where many of the state's most vulnerable residents are housed, and where the state has repeatedly had trouble with abusive employees and unexplained injuries and deaths among residents, according to the report.

The report was commissioned by Gov. Andrew M. Cuomo in response to a Times investigation last year into problems of abuse, neglect and fraud in state homes and institutions for the developmentally disabled. A draft of the report began circulating in October, but has not yet been released to the public; people frustrated by the delay separately provided to The Times an executive summary and a bound copy drafted in December.

Problems were found at all six state agencies that provide residential service to children and adults with an array of disabilities, mental illnesses or other issues that qualify them to receive specialized care by the state.

According to the report, a regulatory maze has complicated and in some cases constrained the state's response to claims of abuse. At one agency, the police are summoned if "there is reason to believe that a crime has been committed," while another agency does so only if a potential felony has been committed. A third agency turns to law enforcement only if a local district attorney has "indicated a prior interest," the report said.

Entire article:
People in state care hurt by abuse, neglect
http://tinyurl.com/ide0328121a
Related:
Jonathan's Law and Oswald D. Heck Developmental Center (Inclusion Daily Express Archives)
http://www.inclusiondaily.com/news/institutions/ny/odheck.htm

 

 

**

 

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 econo-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 it's 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.