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Vital Signs

Taking the Pulse of the Disability Community's Heartbeat

by: Karen Stone

Born and raised in San Francisco, Karen Stone, now 53, studied photography, and later obtained a B.A. in Communications from Antioch College. She then worked as a professional photographer for over twelve years in California. Later, upon entering the marketing field, Ms. Stone made use of her photography, writing, and business skills. After relocating to Albuquerque, New Mexico (USA), she worked in marketing architectural/engineering services until slowed down by Multiple Sclerosis.

Being my last column for the year, and for the century, I feel it is appropriate to take pulse of the disability community's heartbeat here in America.

In an unscientific poll taken by disability activist, Paul Cannaday, much is revealed. Following is part. Note: most all comments in the below poll are Paul Cannaday's, but those in [brackets] belong to KGS:

Who do you think was the person in the disability community that did the most good for the disability community this century?

1. Ed Roberts, Founder of CIL [for those of you not familiar with this, "CIL" stands for "Center for Independent Living." But Ed Roberts founded more than just one CIL. He is actually considered the father of the independent living movement worldwide]

2. Helen Keller

3. Franklin Roosevelt [FDR]: Greatest President this century, Role Model for us who came later, founder of Social Security. It could be debated if he was a member of the community as he hid his disability but so did everyone else who could get away with it at the time.

Tie 4. Justin Dart [founder of Justice for All. On January 15th, 1998 (Martin Luther King's birthday), in a ceremony in the White House East Room, Justin Dart was awarded the Presidential Medal of Freedom - the highest civilian honor in the U.S.A.]

Tie 4. Professor Stephen Hawking

Tie 4. John Hockenberry [see his book Moving Violations: War Zones, Wheelchairs and Declarations of Independence, the "riveting, in-your-face" memoir]

5. Anne Mansfield Sullivan

Who do you think was the person in the disability community that did the most wrong for the disability community this century?

Tie 1. Christopher Reeves

Tie 1. Hitler

Tie 1. Jerry Lewis telethon for MDA

2. Jack Kevorkian

3. Ronald Reagan

4. Peter Singer: Recently appointed to a tenured chair at the Center for Human Values at Princeton University, a prominent leader in shaping the national policy on bioethics. Singer is arguing for major policy changes: people with significant cognitive disabilities and infants with any known disability should be killed when there is a benefit to the non-disabled people around them to having them removed.

In brief, this poll also says the Americans with Disabilities Act (ADA) was the event that did the most good for the disability community this century. Likewise, the event that was considered doing the most wrong for the disability community this century was the Second World War with, ironically, the ADA garnering the second most votes because so many businesses and people would use as many loop holes as possible to get out of their legal and moral obligations in complying with this Act.

Without doubt, the last decade of this century has seen a blossoming of both disability pride and civil rights as a viable issue belonging to this community.

Today, we do not need to hide our wheelchairs like FDR did in order to move and shake others. Our voices can be heard in print, over cyberwaves, in protesting with solidarity to the likes of ADAPT actions, in the spoken words of our companions, friends, family members, and in more, much more.

Ironically, it was FDR himself who declared, "Physical strength can never permanently withstand the impact of spiritual force." What sagely advice.

Interestingly, today, we are called the largest minority of all, and considering that it is the norm to age into disability, we are certainly a growing community with the increasingly greying population curve pushing us along.

Today, access in America is not only considered a right by many, but is a lifestyle also utilized by nondisabled mothers, our perennial delivery person, architects promulgating universal design, the cyclist using sidewalk ramps, and on and on.

And so our pride swells, as does disability cool, meaning that it is easy to declare, "I'm disabled, soooo..." with the casual aplomb and shrug of our shoulders.

Today, sadly, so many of the founding leaders of this disability surge in rights and pride are no longer with us, the burden of maintaining the bonfire and its momentum falling upon the current generation of notables within our community. And blessed be, many have picked up the baton.

Albert Schweitzer, a persona extraordinaire in that he was a man of many talents and purposes -- philosopher, physician, musician, theologian, author, builder -- seemed to be specifically addressing our community when he said, "In everyone's life, at some time, our inner fire goes out. It is then burst into flame by an encounter with another human being. We should all be thankful for those people who rekindle the inner spirit."

We realize, though much of the aforementioned has been accomplished, there remains so much to be done. Granted, the ADA gives us clout, but it is equally by no means a panacea.

There remains a great deal of basic ramping to do, particularly in the attitudinal minds of many. Alas, disability remains to be a formidable fear of many nondisabled individuals, making our advocacy work as challenging as ever.

So more than ever, disability activists need to work smarter, not harder, while preserving the ever important non-violent tactics, perseverance, and solidarity that the majority of protesters at Seattle's recent World Trade Organization conference so successfully and exquisitely illustrated.

Too, in this struggle, we must remind ourselves, "We cannot live only for ourselves. A thousand fibers connect us with our fellow men; and among those fibers, as sympathetic threads, our actions run as causes, and they come back to us as effects..." so stated author Herman Melville.

And as actor Neil Marcus further asserted in 1993, something that we need to demonstrate over and over again, "Disability is not a 'brave struggle' or 'courage in the face of adversity'... disability is an art. It's an ingenious way to live."

As I often say to loved ones and friends in parting: "Be strong. Much love, light, and laughter."

About Karen G. Stone

History
Born and raised in San Francisco, Karen Stone, now 53, studied photography, and later obtained a B.A. in Communications from Antioch College. She then worked as a professional photographer for over twelve years in California. Later, upon entering the marketing field, Ms. Stone made use of her photography, writing, and business skills. After relocating to Albuquerque, New Mexico (USA), she worked in marketing architectural/engineering services until slowed down by Multiple Sclerosis.

Currently
Ms. Stone has produced an award-winning, bimonthly column for the Albuquerque Journal newspaper (Meeting the Challenge) for 10 years, and currently continues to write pieces for national magazines and additional publications overseas. She has authored the non-fiction book, Awakening to Disability: Nothing About Us Without Us (1997, Volcano Press). She lectures frequently on disability issues, and continues to photograph unassigned work.