Hubs & Spokes #2

Thoughts escaping my brain.

Hello, subscribers and followers. Welcome to my little corner of Substack. My goal with Reality Check is to share my life experience as well as my professional experience in how to be a person with a disability with finesse. I want to help you advocate for yourself, or for your family and friends. I want you to be able to benefit from my hard-won wisdom. It is possible to have disability pride and positivity and still acknowledge that disability can also suck. Hard.

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May You Live in Interesting Times

Photo by Stephen Radford on Unsplash

Every day seems to bring a fresh delivery of WTF. You know the hits already, or you’re ignoring the news on purpose—if so, good for you.

Who knows, on given day, whether any of the previous strategies to obtain or maintain medical/disability related accommodations will still work. Do the agencies or vendors a) still exist; b) still function; c) still have the staff you’re accustomed to working with?

How Do You Prioritize What To Worry About?

My late mother just worried about everything. Except in her mind, the evil Democrats were the ones who would crash the economy, devalue the dollar, and bring widespread unrest and insecurity.

I thank the gods every day that she is not around to force me to discuss this with her. But, I am sorry that she isn’t around to appreciate that my financial and medical insecurities can be traced directly to 47 and his clown car of incompetents. She voted for him the first time, and would have voted for him again.

Semi-serious Question: Have any of These People Ever Managed Any Processes?

I have only managed about 20 people, at the most, all at one time. I had different teams doing very different tasks. I understood how involved the tasks were, and how much time they took. I tried to staff and train appropriately, within the constraints forced upon me by my robot overlords.

Periodically, far up the food chain, financial panic would set-in, and we would be asked to cut a percentage of our already lean budget. The only thing that saved us from catastrophe was that our services were legally mandated—meaning we couldn’t stop providing them. In addition, the law looks at the financial resources of an entire entity if it claims that it can’t afford to provide a particular service.

When I say “the law”, I mean federal laws like Section 504 of the Rehabilitation Act and The Amended Americans With Disabilities Act. I am sure 47 will be coming for these laws as well.

Watch These Documentaries

On Netflix, watch Crip Camp, which won Oscars, and which shows the organic development of the Independent Living Movement.

Just released on PBS, watch Change, Not Charity: The Americans With Disabilities Act. Both films were directed by Jim Lebretcht, who happens to be disabled. I just watched Change… this morning, and struck by two things. One was that on screen, there was my late friend, Gary Peterson, in footage from the early days of the Center for Independent Living in Berkeley, California.

The second thing that struck me was that when I worked at DREDF (Disability Rights, Education and Defense Fund) in the summer of 1992, how massively important their work was.

We may be losing fifty years of progress for the civil rights of people with disabilities in a tiny fraction of that time.