​The Power of Images

Posted by Tim Gilmer in Life After Paralysis on September 29, 2021 # Lifestyle, SCI Awareness

I have written about the lack of awareness surrounding spinal cord injury (see earlier September blog). The root of that ignorance has been with us since at least WWII. As a result, the public today still holds low expectations and outdated stereotypes. The good news is we have tools to combat it. We can tell our stories — successes as well as obstacles and hardships — in specific details that can be powerfully educational. We can also tell our story in iconic photos that illustrate an urgent need in a single image, series of images, video or film. Finally, we have legislation, which corrects, but not necessarily eradicates, the root cause.

1990 photo of the “Capitol Crawl” — wheelchair users and others with serious mobility impairments crawling up the steps of the nation’s Capitol; Jeff Markowitz/AP

The weeks-long national TV coverage of the 1977 occupation of the Health, Education and Welfare building in San Francisco by disability activists resulted in funding to back up the 1973 Rehab Act; the 1990 photos of the “Capitol Crawl” — wheelchair users and others with serious mobility impairments crawling up the steps of the nation’s Capitol in Washington, D. C. — forced passage of the ADA; and most recently, ADAPT’s “die-in” inside the Capitol in 2017, where wheelchair users protested Republican-backed legislation that would have made cuts in Medicaid by sprawling on the floor as if dead, was also covered on national TV and news outlets and helped block the passage of that law.

What are the images and stories that need to be told now? Which ones are critical to us now and in the near future and in the long run? One vastly underappreciated need is consistent national access to affordable and efficient personal care that is critical to our everyday lives.

If you are a quad or other person who needs daily assistance to get out of bed mornings and enjoy the full range of healthcare, employment and everyday options, then you know that having a reliable personal care attendant is critical to your independence and well-being. Whether you are an attorney, teacher, office worker, Paralympic athlete, college student, volunteer or unemployed person, you will be hard-pressed to pay for attendant care if you must pay out of pocket.

A successful attorney with his own law firm in Texas — a C5 quad who has always had to pay the full cost of his own PCAs — told me that after paying his attendants, his business and office expenses, he has just enough money to live comfortably, with no high-end extras (not your usual attorney lifestyle). But what happens if his business drops off, he spends time in the hospital, or some unforeseen national or global event affects his bottom line? Will he have enough to pay $50,000 a year for personal care?

I knew a successful quadriplegic writer who specialized in writing movie reviews and also worked full-time for Amazon. He could work from home from time to time but began to have medical problems. Uncontrolled and persistent spasms led to autonomic dysreflexia and chronic bladder infections that doctors could not diminish. He lost work time, his ability to drive, and control over many of his everyday activities. Loss of income, combined with his ever-present personal care costs and rising medical bills, ate away at his monthly income and savings, forcing him to take a loan out on his house, which led to losing it. The next step would be going into a nursing home, a fate that strikes fear into the heart of anyone who pays attention to quality of care and loss of independence. For some, it can be a death sentence. When a serious lung infection developed, tired of the incessant struggle, trapped in ICU with hope for his future dwindling, he chose to die instead of fight the infection.

Another quad, even more successful, had a reputation as a well-known photographer in the hip-hop world and disability worlds, a consummate professional who had money, a wife, and a top-of-the-line photography studio complete with make-up rooms and adaptive equipment that gave him total control. He traveled internationally, teaching and helping young people learn photography. But persistent pain became his everyday nemesis. The advent of smartphones put powerful cameras in everyone’s hands. The need for professional photographers took a sudden dive, and he and his wife split up. His ability to pay for attendant care, medical bills and other necessities took their toll. Now he had just one companion, his unrelenting neuropathic pain. He could see no way out. Unbeknownst to his closest friends, he planned a painless suicide. Most of his acquaintances had no idea of his plight — until he carried out his plan.

These are just a couple of the many thousands of tragic stories affecting people in the disability community, most of them with far fewer resources than those mentioned above. In each of them, not having to pay for personal care out of pocket can make the difference between life and death.

Every day, countless students, full and part-time workers and those who cannot work but are living fulfilling and productive lives, must fight a daily battle just to be able to get up each morning, take care of their everyday needs, do what they are able to do and go to bed safely at night. But lawmakers and medical professionals are ignorant of just how important personal care is, how difficult it is to find qualified PCAs and keep them, and how expensive it is. When we “succeed” in getting employment, immediately we are classified as no longer disabled and no longer in need of subsidized personal care, as if our paralysis simply vanishes magically when we start getting a decent paycheck.

We must make it known our success stories that show how people with SCI can flourish with PCAs, become taxpayers and stay healthy with proper personal care. Or how we can volunteer and make a difference. And many of us, unable to work or volunteer through no fault of our own, also deserve respect. In this way, by showing others how critical personal care attendants are to our eventually flourishing, we lay the groundwork for lawmakers to overcome their ignorance and begin to see the importance of supporting legislation aimed at making personal care affordable, efficient and available to those of us who are doing our best to live independently.

In short, our most important job now is to convince legislators and the public that spending more money on personal care is a wise investment that will pay for itself and then some. It will benefit not only those who receive it but our society as a whole.

Tim Gilmer graduated from UCLA in the late-1960’s, added an M.A. from the Southern Oregon University in 1977, taught writing classes in Portland for 12 years, then embarked on a writing career. After becoming an Oregon Literary Fellow, he went on to join New Mobility magazine in 2000 and edited the magazine for 18 years. He has published upwards of 100 articles, 200 columns, occasional movie reviews and essays. He and Sam, his wife and companion of 47 years, also own and operate an organic farm south of Portland, where they live with their daughter and son-in-law, four grandsons, and a resident barn owl. An excerpt from a memoir about his early post-SCI years, as part of a compendium of his writing over the past 30 years, can be read at his website — All You Need

Photo: Jeff Markowitz/AP

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.