When the new Beetles came out, Gretchen had kicked around the idea of ditching all of the cab business and getting a car. Since cars came with lots of options but none that made the car driveable by her, she and the Recluse realized the car would have to be modified. Gretchen heard that lots of disabled people got financial help for such things through Voc-Rehab.
Look. You work. You’re not really eligible to be disabled. Air-quotes.
One sleepy post-lunch hour in her clinic office, she gave in to an impulse and looked up the number. When no one picked up at the main number, she worked her way through the extensions until a deep, annoyed voice said hello. That one call into the San Francisco office of Voc-Rehab pretty much cured any hope she had of even minimal financial assistance. The call also showed how employment was a universal solvent on the human stain of disability, at least where government agencies were concerned.
The counselor had more to say, nasally, on the overall lack of money available and went on to say that he himself was legally blind and had been waiting five years for a computer he could use. To do his job. Voc-rehabbing people who were legally blind, for example. So complaining to him was not really something he would be real open to hearing. If she didn’t mind.
There was a remarkable lack of public debate in San Francisco — or anywhere else — on Adult Diaper Dispensation (ADD). All costs were loudly underwritten by The Dignity Foundation, a charitable body dedicated to community development, medical research, K-12 education, and, now, small businesses hit by the “squat-by defecation” of serial defecants.
Would you like a TDF annual report? We have one for you right here. It makes no mention of our corporate sibling and sponsor, a disposable paper-goods manufacturer that is aging out of infant goods into a more mature market. Our Dignity Initiative public information campaign takes a broad-based social education approach to bring the public up to speed on what we can do — together — through top-level messaging in high-traffic spaces with framing that deploys innocuous word-play rather that blunt fear.
This top-level messaging was visible to all who cared to look out the car window at the blinking billboard near the off-ramp at Duboce. Dignity Is No Accident(s).
“I’m not really looking to change, Mom.”
“Your life could be easier if you didn’t have muscular dystrophy. What I would have given for this Genetic Reparative Therapy when you were little.”
Gretchen poured water in the coffee maker. “Yeah, I’m well aware that there’s a list out there of Lives That Suck and — of course! — my name is on it.”
Alice continued. “I can’t believe you would even consider not being part of this study.”
“Well, jeez, Mom, I have to consider not doing it.” Gretchen leaned against the counter. The machine hissed and steamed. “Remember when they wanted to fix my foot and didn’t mention they’d be removing half of it? Good thing we pressed for details on that one.”
“I have to live with the results of this experiment – I will be the result of this experiment. And I gotta tell you – just because something can be done is not necessarily a good enough reason to do it.”
Call, email, use social media to tell your Senators to vote NO on the AHCA:
Sample Script: “My name is ________________, and I’m calling to tell you that I oppose, and expect you to oppose, the American Health Care Act. We’re not going back to a pre – ACA era where insurers could ignore the needs of people with disabilities and pre – existing conditions and everyone was one medical emergency away from bankruptcy. If you value the health and well – being of your constituents, you must speak and vote against the AHCA.”
My name is Ingrid Tischer and I live in California.
My pre-existing condition is muscular dystrophy with chronic respiratory failure.
Without healthcare coverage for preexisting conditions, I wouldn’t have a machine called a Bi-PAP S/T and I would have died in my sleep a long time ago from carbon dioxide narcosis.
I wouldn’t have been able to keep walking for as long as I did because I wouldn’t have had orthotics.
I wouldn’t have been able to transition to a wheelchair when I finally needed to.
Because of this, I would tell my senators to vote NO on the AHCA and against any legislation that protects profits over people.
Including people with preexisting conditions.
I am a preexisting condition.
for Belma González
When Gretchen landed in the hospital again with pneumonia in 1993 she learned she had something called sleep apnea, plus chronic respiratory failure and minor heart damage that she, only 27, could expect to heal with proper treatment. At the first Wednesday morning meeting following her return to work a few weeks later, the West-Hesperidan women’s free clinic staff apologized to her. Even with her cane, Gretchen couldn’t stand long enough for fourteen women to express remorse so everyone stayed seated instead of making a circle around her. The gist was that while they knew Gretchen had muscular dystrophy, they still hadn’t thought of her “like that.” They said they were sorry for not respecting that Gretchen had a disability and for assuming that she had been lazy and napping at her desk when she was, in fact, semi-conscious and unconscious, depending on the time of day.
A few weeks ago, Alice Wong asked me, a fellow person living with a progressive neuromuscular disease (NMD), how I would respond to someone with an NMD who was saying they wanted to commit suicide. This was my answer.
Do people living with disabilities also experience depression? Yes. Anyone can have depression and you are no different in deserving treatment and relief for it. Thinking that you alone can help yourself with your depression through suicide is a tragic form of “overcoming.”
If finding the right treatment for your depression proves difficult, it’s not proof that your disability makes you different from other people.
It’s not proof that, for you, suicide is a rational choice. No. It’s proof that depression is difficult to treat for vast numbers of people. Like you.
It’s free and confidential to contact the National Suicide Prevention Lifeline anytime. You are not a medical prognosis or a checklist of functional abilities. You’re a person. Who is in terrible pain now and deserves relief.
If you’re in crisis: