A Blog of Personal Thoughts

Personal Thoughts on Disabilities

January 2026

I began working with people with disabilities in the mid-1950s. I was 14 and volunteered at the New York University Research Hospital. It was a six-block walk after school on Friday afternoons. I went to Friends Seminary, a Quaker school, that encouraged social causes and volunteering. I did not want to be a Candy Striper or work with the elderly. Children yes, and someone assigned me to a ward with terminally ill infants and preschoolers. No one in today’s world would consider assigning a teenager to such a ward.

I loved it. The staff was kind to me, but it was the infants and children I remember from those four years.  Three children struck my heart. Even today I remember their names, ages, and ailments. A newborn with hydrocephalus, a preschooler with cancer, and a two-year-old with an undiagnosed but fatal illness. None survived my four-year tenure there.

I had gone to a school with high academic standards. My freshman year at college, quite bored, I read the student newspaper, The Colorado Daily, cover to cover. I read the want ads. Job opening, Wallace Village for Children, M-F, 3-9. I called and went for an interview. As it turned out, I misread the ad as Monday and Friday. It was a 30-hour a week job. I took it. Yes, as I went through the next three years, my grades suffered, but I loved my 30 to 40 hour a week, 50-week a year job. I still remember the names of each of those children. Some were bright, some average, and a few very slow learners. Their issues varied—behavioral problems, learning problems, epilepsy, terminal cancer, recovery from heart surgery, family problems. My job was to structure and supervise the after-school activities.

The students lived there. The second and third years I worked there, I lived there also. That included a usual bedtime routine and getting them up in the morning. Someone else cooked dinner, but I and the older children cooked breakfast. I began this work long before the first special education law, PL 94-142 (1975) and its revision, IDEA (1990).

That volunteering and my first job began my career. I have worked with children and adults with learning disabilities, cancer, post-traumatic stress (PTSD), epilepsy, intellectual disabilities, depression, traumatic brain injury (TBI), deafness, blindness, and suicide issues.

I learned about the Americans with Disabilities Act (ADA) because of a book I wrote about an at-sea rescue. The man who captained the commercial fishing vessel, F/V Fargo, Larry Hills, was disabled and could no longer fish. His first goal after months in the hospital and a move to Eastern Oregon’s High Mountain Desert, was to learn to walk again—25 steps out of his wheelchair in the Oregon desert, then 50 steps. Stubborn man since he’d been told he’d never walk again. Within two years, he went to work for the US Forest Service. U. S. Representative Tony Coelho, who had epilepsy, introduced the ADA bill into the House of Representatives. Signed into law in 1990, Larry became one of the many pioneers in the field to help with its implementation. His area was within the U.S. Forest Service. After nine years of researching and writing, The Night Orion Fell was published in 2012. In 2008, Congress revised the ADA to include more disabilities.

Flash back to 1974 when I first started counting and charting my weird events. After several years of intermittent daily counting and charting my own behavior, fast forward to 2019 when I was diagnosed with epilepsy. Only recently did I learn that epilepsy is included as one of the disabilities in the 2008 law. Having worked with people with disabilities since 1959, I don’t feel disabled. However, according to the law, I am. I had two generalized seizures in July. That meant I was not allowed to drive for six months. Not being able to drive is a disability. Needing more sleep than four to six hours is a disability: I get much less work done. It seems odd to think of myself as disabled. I used to say my epilepsy was mild…until a doctor said there was no such thing as mild epilepsy. It’s a “you have it or you don’t.”

Although I knew something was wrong when I recovered from scarlet fever at age five, I didn’t know what. I remember hearing my mother often say to me ‘Keep your hands off the wall.’ Years later, I learned she didn’t say it to any of my other siblings. Just me. Why me? Because I put my hands on the wall to stabilize myself because of vertigo, dizziness, lightheadedness, or epilepsy-caused hallucinations. I never knew how to explain that to her. Knowing my practical mother, she would have said I was being silly if I had told her one of those events. If my parents had known my diagnosis, my mother would have responded with the absurdity of such a diagnosis. My father would have listened, asked questions, and thought about it. He probably would have researched it too.

What I like about my diagnosis is that it now explains so many of my behaviors, my interests, and my career paths. It makes sense now. I make sense to me now. I am not going to be quiet about it. In the world about one-sixth (1/6 or 17%) of the people have a disability. In the US, the estimate in one quarter (1/4 or 25%). That’s a lot of people.

I refuse to be silent. The other three-quarters of people in my country, or five-sixths in the world, need to know that there is no shame having a disability. Many people don’t do well in school, many are blind, deaf, have Down’s Syndrome, cerebral palsy, are missing a limb, etc. There are a multitude of disabilities. I’m not going to list more. If we think about it, we all know someone with a disability.

I appreciate the diagnosis. I remain terrified when I have an aura and know a generalized seizure will occur or when I have any of those unusual behaviors that lasts longer than 10 minutes. The good part is that I now know what’s wrong with me and I know the moments of the focal or the generalized seizure will pass. Medication helps immensely. Because I know what it’s like to live without the medication, I am diligent about taking it. No skipped meds for me because it’s not worth the price of one of those weird behaviors or a seizure.