The Journey from Disability Shame to Disability Pride

It helps to have a mentor as a guidepost

by: Karen Stone

 photo of K. Stoneblank spaceBorn 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.

  It was like history revisited when we first met. You looked so much like Abraham Lincoln. And like your wife, you exuded a most gentle, welcoming grace. Though having been on the road for over five weeks and with another nine weeks still to go, I felt as if I arrived home.

 Little did I know at the time that this was to mark the beginning of an influential, long-term contact, my being a widely experienced traveler and quite used to the constantly intense, albeit fleeting, meetings of new faces that happens to travelers when on the road.

And little did I know at the time just how much you would teach me in your quiet, albeit powerful way, about life in a wheelchair. And to this very day, close to 11 years later, your teachings still resonate with awesome clarity and truth.

Perhaps the most profound lesson you gave me was the attitude, "I'm disabled, soooo?" Apparently, this philosophy did not dampen your activism one bit. In fact, it seemed to be the very white-hot core of your disability activism.

My angels made very certain that I'd meet you when first beginning to use the wheelchair myself. Again, in your quiet manner, you conveyed my life henceforth would be fine, and that disablement was more of society's problems than my own. You made very certain I understood well this distinction.

In the 11 years that have since elapsed, Adolf, I have not only travelled from disability shame to disability pride, but I have become a staunch disability rights advocate, testifying to such via the written word through both newspaper columns and through a book covering the same.

It was by no means an easy path in which to travel. Like you, I found myself dealing with disability issues a tough row to hoe, largely because of society's widespread ignorance and flagrant discrimination. And so the birth of my disability activism. But also, like you, after some struggles, after some very hard-core wrestling, I found life very worth living.

Though at the beginning of my new status as now a fully-fledged member of the disability community, it took me a while to embrace my membership. I still needed to say good-bye to the ablebodied community with which I considered myself to be a member.

But being in Sweden for most of the summer of 1988 to photograph and write about accessible, aesthetic architecture, my awareness of barriers that people with disabilities (PWDs) so unfairly faced provided me with an early onset of outrage. And, of course, this added early fuel to my disability activism.

Now, I cannot see a separation between my wheelchair and disability activism. It is a marriage set in rock.

I recently interviewed America's elder disability leader, Justin Dart. I asked him, "Given the number of years you have been involved in disability activism, what advice would you give to someone newly disabled?"

His answer came from a speech Justin gave at the Task Force Youth Conference in Wash., DC, July 22, 1999:

Get into empowerment. Get into politics as if your life depended upon it. It does. And the lives of all humans in the 21st Century...become a politician for empowerment in your living room, in your community...vote. Educate others to vote for self and for all. But voting alone won't do it. Winning politics is a 365 day [affair]. Work for the party and the candidates of your choice. Volunteer, advocate, lead, contribute...

Then I continued to ponder: As a comrade in the disability movement, I have chosen the gentle persuasion route of activism. Though by no means am I any less appalled or less angered about the treatment of PWDs in our society, I have been chastised by members of our community for not being strident enough. Though fully cognizant of the urgency -- and of the fact that we cannot wait forever for people to wake up to the fact that discrimination of PWDs continues to be both blatantly rampant and overt -- I feel any vented anger leads to a didactism that can turn potential supporters off. Yet, organizations like ADAPT are doing a magnificent job. Where do you position yourself on this seesawing continuum and how do you find a balance here?

And he replied, "There are many roles. Follow your conscious."

So eleven years after meeting you, Adolf, I am still learning and still trying. But like you, for myself, I wouldn't change a thing. Why? I'm now a better human being.
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.

English