Monthly Archives: March 2014

A Master Sommelier of … disabilities

Man tasting a glass of red wineTo become a Master Sommelier through the famed Court of Master Sommeliers one must pass four levels of course work and examinations on theories of wine and spirits composition and production, must be able to perform hair-splitting analyses of complex wines and spirits by vision, smell and taste; must be able to identify wines in blind tastings, and be able properly to pair food, wine and spirits … all while maintaining proper “demeanor of the professional sommelier.”

The pass rate for the Master Sommelier examination is approximately 10%.  Smiling winemaker in cellar looking satisfied at a glass of whitOnly 211 people have been conferred with the title since 1977 when the Court was established.

To become a Master Sommelier of … disabilities I spent five years becoming fluent in American Sign Language and its variants.  This involved both course work and immersion into deaf communities and culture – attending deaf storytelling slams, and studying mime and deaf theater.

I learned that Alexander Graham Bell, the son of a deaf mother and husband to a deaf woman, was proficient in sign language and taught deaf children.   Bell’s work was shaped by his desire to penetrate and dispel the isolation caused by deafness, and it is theorized that the telephone was Bell’s failed attempt at developing a hearing aid.

I learned the rich history of the disability rights movement in the United States that paved the way for the Rehabilitation Act of 1973, and the Americans With Disabilities Act.

ProtestDisabled people fought for inclusion and access and for the elimination of arbitrary barriers.    They fought for the eradication of architectural and physical barriers, and the elimination of communication barriers.   They fought for curb cuts, ramps, accessible bathrooms.  Disabled people asked that information be printed in Braille, that spoken information be interpreted into sign language, and rendered in closed captioning.   Disabled people fought not to be institutionalized but instead to be able to maintain themselves in their own homes.   Disabled people fought hard for equal opportunities in education, public accommodations, housing, and the workplace.

In 1977, disabled people held a twenty-five day sit-in, occupying U.S. Department of Health, Education and Welfare buildings in Washington, D.C., and San Francisco successfully achieving their goal of the passage of  regulations that strengthened the Rehab Act.images[3]

There are Disability Pride Parades where disabled people show the world they are loud and proud!  The next to be held in Chicago, July 19th, 2014.

In 1990, when the Americans With Disabilities Act became law, my practice as a sign language interpreter flourished.  I was a “reasonable accommodation” and interpreted in educational, medical, government, business, and cultural settings.

NEWARK - NOVEMBER 9: Singer Gladys Knight performs for the 9th AI interpreted for Gladys Knight and the Pips, Colin Powell, Elie Wiesel, Barbara Jordan, Jonathan Kozol, Angela Davis, bell hooks, Newt Gingrich, music festivals … for blues diva, Kim Massie …  for comedians, among them, Kate Clinton ….  I interpreted for deaf-blind clients and knew a deaf couple who knew Helen Keller.

As an interpreter, my deaf clients were mostly achieving in school, andimages[6] professionally.   These deaf students were in undergraduate and graduate programs – they majored in biology, pre-med, law enforcement, graphic design, architecture, law – just to name a few.  I traveled in Spain and France interpreting courses for a deaf student studying abroad.   (That assignment showed me that deaf folks often feel no less at home in a foreign country where they can’t understand the language than they do in their native land where they also have difficulties with spoken language.)

imagesX401D8Y4I interpreted at Ralston-Purina, AT&T, the National Geospatial-Intelligence Agency, the National Personnel Records Center … job interviews, employee evaluations, business meetings, trainings of every variety.   Deaf workers were dedicated, valued workers.

I interpreted a speech at a conference on disabled people’s interests in which the speaker made the most interesting and cogent Young successful businessman jumping over gap. Risk and challengargument that ALL people are accommodated.   She estimated the cost of the roomful of chairs that cost the hotel many thousands of dollars.   But she, and the others in wheel-chairs, had brought their own.   They did not need the provision of chairs.   She went on to point out that the expensive, state-of-the-art sound system was an accommodation for hearing people … the lighting … an accommodation for the sighted.

And this is what I knew of disabilities and of people with disabilities.

Disabled people were accomplished, successful, connected, and proud.   They did not walk around in a state of shame, hat in hand.

One deaf friend of mine Deaf Persons Hand Demonstratingexclaimed he was thrilled to be born deaf when he was (1964) because there had been a German Measles epidemic during that time causing many babies to be born deaf.   He appreciated having so many deaf friends … and courting so many pretty deaf girls!

Disabled people needed an accommodation here and there, but then so did we all … it was all part of a continuum of abilities and disabilities that required accommodation in one way or another.

Being disabled wasn’t a big deal.

That is what I thought.

I have since learned that being disabled enough to be eligible for Social Security disability benefits is a big deal.

I have never known a disabled person applying for, or receiving, Social Security Unfortunate man portraitdisability benefits to describe themselves as proud, or to say they are happy to be in their spot.  They are mostly ashamed … desperate … and isolated.

When disability is defined as the “inability to engage in any substantial gainful activity …” – the legal definition in Social Security’s statute – that is quite a harsher, and more desperate definition of “disability” than would fit the loud and proud – and working – disabled, in other words, the disabled people contemplated in the Americans With Disabilities Act.

Although there is one word, “disabled” there are a variety of meanings and levels of severity it describes.

The Social Security definition of “disability” requires an inability to do any job at all on a sustained, full-time basis.   This version of “disability” describes a person who has little or no economic value in the market place, and who cannot support him or herself.

But the definition of “disability” in the Americans With Disabilities Act describes a person who possesses merely a “physical or mental impairment that substantially limits one or more major life activities …” but not necessarily a person who is unable to sustain a job on a full-time basis.   Indeed, the Americans With Disabilities Act contemplates that people meeting its definition can assert “reasonable accommodations” so their chances of success and achievement in the workplace are optimized.

Achievement and success of disabled people is largely the goal of the Americans With Disabilities Act.   But Social Security disability is meant to provide financial subsistence for people who cannot economically be in the game.

One word, two completely different circumstances.

As an interpreter, I had drunk plenty of the wine of disability, and alcohol drinks set isolated on a blackthought I knew what disability was … until I took a taste of the hard liquor of disability that defines the people for whom the Social Security disability statute is intended.

These different categories of “disability” are as different as a crisp chardonnay with pear-apple overtones is to an oak-y bourbon with a caramel afterglow.

Even disabled people have difficulty understanding the gradations of disabilities.  

I have seen deaf people say, “get a job!” in exasperation at disabled people who need the financial supports of Social Security disability.

Even disabled people have difficulty understanding that when a disability such as deafness is coupled with a cognitive impairment or a mental disorder or another physical impairment … the coupling is devastating.   The aggregating of disabilities one on top of the other is a state from which a person cannot often rise to productivity and self-support – no matter the accommodations.

From my vantage point, I see the disabled people I represent before the Social Security Administration as being the most disabled people I have ever encountered.

They are largely isolated from the disability rights movement, estranged from other disabled people, and what’s more … attacked from an endless barrage of criticism from an uninformed public that says, essentially, “why can’t you be like those good disabled people?!?”

Conference RoomAs a non-disabled person, I do not feel guilty that a hotel conference center provides me the accommodation of a chair, or a sound system, or light.   It has never occurred to me even really to appreciate it particularly.   I take it for granted.

Disabled people who require the financial supports of Social Security disability benefits, should similarly not feel shame … nor should they be shamed.   The fact that severely disabled people cannot make it in the work place speaks in part to the severity of their disability, but also to the harsh, Celebration. Hands holding the glasses of champagne and wine makcompetitiveness of the American work place.

Not being able to work in the competitive work force might be the measure of economic value, but it is not the measure of human value.

Let us raise our glass to that!

 

An ever e-x-p-a-n-d-i-n-g universe of fear

 

WormholeMy fears listed in 2-point type would stretch from planet Earth into the Hubble deep field … sucked by dark energy ever farther away … an endless and accelerating supply of mostly banal personal concerns.   I awaken with them sometimes in the middle of the night … a subconscious working them over in my sleep.

I attempt to cultivate courage … to affect a gravitational pull … over my shameful, ever-expanding universe of fears.

And so … … I think of the unknown man standing alone in protest before the tanks in Tiananmen Square, 8.-Rebel-by-Marco-Crupi-Visual-Artist[1]humbly holding his white plastic shopping bag.   I think of Nelson Mandela jailed on Robben Island … of Galileo Galilei persecuted for declaring his discovery that Earth revolves around Sun.   I think of Thich Quang Duc‘s self-immolation … of Maximilian Kolbe, sheltering Jews despite arrests a stamp printed in USA shows Frederick Douglass leader of the abby the Nazi regime – and eventually being sent to Auschwitz.  Mahatma Gandhi, Aung San Suu Kyi, Desmond Tutu, Emmeline Pankhurst, Edith Cavell, Odette Sansom, Abraham Lincoln, Sophie Scholl, Frederick Douglass, Malala Yousafzai.

I am not those people.

I am not even like those people.

The House of Representatives Budget Committee report, The War On Poverty:  50 Years Later frightens me.

The relentless, disproportionate reports of fraud perpetrated by claimants and recipients of Social Security disability benefits sends shivers up my spine.

The cultivation of an angry mob of well-meaning, but unknowing, people who hold a negative opinion of disabled people and who will demand policy changes based on misinformation, strikes fear into my heart.

Hearing an Administrative Law Judge say he is afraid to approve legitimately disabled claimants for fear of being called “outlier,” makes me break into a cold sweat for knowing what disabled people will continue to endure upon repeated, unfounded denials of support.

I think of brave people not to insinuate myself into their ranks.   I am not Abstract Businessman jets off with Rocket Pack.those people.   I quiver and ride my rocket ship of fear into ether.

I think of brave people to provide for myself a reference point.   And from it, I see the smallness of the courage required of me, and of judges, to do what is right by the disabled people who come to us.

We must endure criticism, be thought of as scoundrels, be misunderstood … fight for our clients, fight a political fight.

Malala_Yousafzai_at_Oval_Office_2013_cropped[1]Malala Yousafzai is a Pakistani girl who, at the age of 12, began blogging about her life in Pakistan under Taliban rule.   She was fearlessly outspoken, documenting human rights violations under the Taliban, and working to advance the cause of education for girls in her country.   She granted interviews to the BBC, the New York Times, eventually a documentary was made about her.   She was nominated for the International Children’s Peace Price … and then, the  Nobel Peace Prize.

On October 9, 2012, a gunman boarded a school bus on which Malala was riding, asked for her by name, and shot her three times.  Malala survived the attack.   The Taliban has reiterated its intent to kill her.   Malala continues to speak and to write.

I am not Malala.

Disabled people, attorneys representing disabled people, Social Security’s workers and judges must endure criticism in a rancorous political climate.   We must endure being misunderstood.   But we also must stand in this swirl and together fight this good and worthy fight … Pin-up Sailor Girls Showing Physical Strengthunderstanding that this fight – though important – is not asking very much of us in the way of courage – really.

We can rise to this occasion.

All hands on deck.