Crawling Towards Independence

The Annual event called the SW Conference on Disability ended Friday here in Albuquerque. It sent me home “loaded for bear!” It’s always invigorating to meet together with others who share similar concerns and struggles.

How many of you have seen this picture? It was taken in 1990, when disabled activists took to the streets to protest the slow progress of the ADA.

Today, ADAPT is doing it again. Trying to get the Congress to take action on The Community Choice Act (CCA) (S. 683, HB1670). http://www.adapt.org/freeourpeople/cca09/report04.html This information is all news to me, though I have been an activist for most of my life.

While getting a lift in a “club car” from the Convention Hall to the parking lot I learned about this amazing New Mexican woman, Linda Pedro, who is an artist and quadriplegic and disability activist. She won a 1978 federal lawsuit, based on Section 504 of the Rehabilitation Act, which required her state to put a program in place that would support her decision to stay in the community and raise her son. She also invented the “Obamanos” slogan that was so helpful in turning this state for our President, or so I heard.

I also got a chance to make the acquaintance of Ellen Perry, a delightful young woman from Carrboro, NC, who has been working as a self-advocate for many years. She led a session on “How to Build a Self-Advocate Grassroots Organization: A Self Advocates Perspective.”

Her own organizing efforts in Carrboro have centered around efforts to assist on of their members in getting out of a nursing facility, and the group effort seems to have been strengthening and family building for everyone involved. Her presentation voiced concerns about true self-advocacy, and the need to speak for yourself if one wants to have an authentic voice.

Some of the discussion in this breakout panel was provocative, circling around an issue I find myself wondering about frequently as I engage in my life and my politics. “What is a self-advocate?” read one of her Powerpoint slides. Good question. “How to find other self-advocates?” is another I pose to myself daily.

A core issue for activism in a democracy is being willing to self-identify and to form empathetic (not charitable) alliances with others who have similar issues. To seek out allies and form effective self-advocacy organizations one must first feel an affinity for one’s self, embrace self-challenges rather than deny them.

Seniors in our society have had problems with this for eons, especially since aging has been viewed so prejudicially, generations put away and out of sight in nursing homes, relegated to the sidelines in the so-called “golden years.” We have the AIDS population to thank for bringing death and dying out of the closet. And the Gray Panthers and Raging Grannies, and even to some extent the AARP, for showing us that elders have passion, intelligence and commitment to spare. Many folks still live in denial and shame, listening to Fox news roll over them.

Many folks live in fear of change, afraid that what marginal security they perceive they possess will be taken from them if they raise a fuss. Many live invisibly, locked up in “secure” facilities, some of their own choosing because they have been taught to fear the “other” –the poor, the disabled, the young, the homeless, the Vet in a wheelchair or who suffers the reoccurring nightmare of PTSD.

If you are invisible and frightened, trust me, the only people who give a damn about your interests are those who want to exploit your fear. It’s time to come out of your homes and form friendly alliances with others who share your concerns, because history tells us that this is how change happens.

My step Dad went blind, very suddenly, in his later years. When he was living in San Jose, CA, my sister tried to persuade him to carry a white cane. His response was, “Hell, when it comes to that I’d rather carry a brick or two! (to throw at any car that might threaten him)” Mind you, he always was a bit of a renegade, and in this case be was likely taking his own spirit of self-determination a bit over the limit! But, I always chuckle at the spirit of his rejoinder.

It’s taken me 4 years to embrace my own disability to the point where I am willing to commit time and energy to working on disability issues. But, I am here now! Me, my blog, my tongue and my willingness to reach out, forge alliances and create new possibilities for employment accommodations here in New Mexico. Brick by brick!

My firm conviction is that this will be accomplished from the Grassroots. So…come find me, because I know you too are out there but I don’t know where you live and Social Security won’t tell me. Send me your email, give me a call, send up a smoke signal!

My personal goal is to form a grassroots organization to find more employment possibilities for the disabled in New Mexico – DAWN (Disability Accommodations Wanted Now), and to collect together enough individuals to go to the Roundhouse and the Governor’s office and some of the other bigger employment outfits in the State (like LANL and Presbyterian, UNM and Intel) and negotiate for more part-time or on-line employment slots. I’d also like to hear more about what you’d like to do! Change is a moving target.