Spinal Cord Injury Awareness: Will We Ever Get There?

Posted by Tim Gilmer in Life After Paralysis on September 23, 2021 # SCI Awareness

Tim and his grandsonsAs most of you know, September has been designated Spinal Cord Injury Awareness Month. When I was injured in 1965 at the age of 20, I had heard of one famous person who sustained an SCI. He was a boyhood idol of mine — Roy Campanella, a major league Hall of Fame baseball great who played catcher for the Brooklyn Dodgers (now L.A. Dodgers). Campanella was injured in a car accident in 1958 at the height of his career when the car he was driving skidded on ice and ran into a telephone pole. He remained paralyzed until his death from heart failure in 1993. He was 71.

Even though Campy’s SCI seemed rare at the time, more than a decade earlier, thousands of WWII veterans had returned from the war with SCIs at a time when doctors knew very little about how to care for paras or quads. Awareness began to tick up a notch when wheelchair-using vets began to take advantage of the G.I. Bill and enroll in colleges nationwide. The concept of “wheelchair-accessibility” didn’t even exist. The main focus on SCI was centered around the tragedy of paralysis, how awful it was. Life expectancy was often only a few years post-injury. Today, nearly 80 years later, life expectancy is getting closer to normal, but the mainstream population still remains ignorant about differences in injury levels, everyday needs, and complications. And that matters.

Eight months after I was injured, I returned to the UCLA campus to resume my education. I had to choose my classes according to which buildings I could enter and had elevators. Most of my classes were confined to just one section of campus since there was no disabled parking on the sprawling campus. I managed to graduate but felt alienated. Looking back, my biggest problem stemmed from a lack of cultural awareness that affected the way people saw me or any other wheelchair user. Besides being objects of pity, we were the victims of low expectations. Like Campy, we were seen as tragic figures with little future, and it was difficult to believe in ourselves (Campy, a C5-6 quad, went on to become head of a Dodger’s scouting region and later was named the Dodger’s assistant to the director of public relations).

In 1975, ten years after my injury, I entered graduate school in a different state. Same problem: inaccessible buildings, no disabled parking. I formed a group on campus, and we tried to beat back the “lack of awareness.” Two years later, a group of heroic disability activists occupied the Health, Education and Welfare building in San Francisco, protesting the lack of funding to implement the Vocational Rehabilitation Act of 1973. National TV networks covered the occupation night after night, week after week. Awareness ticked up a couple more notches.

Finally, in 1990 the ADA was passed but wasn’t implemented until two years later, allowing business owners and the general public time to become aware of its existence. Not many did, and fewer implemented changes. In 1999, now employed as a freelance writer for New Mobility (NM) magazine, I was sent to a beach town in Oregon to investigate and write a cover story about the popular vacation destination. NM had received information from a lawyer whose wife, a power chair user paralyzed with MS (which is related to SCI), was having all kinds of problems just getting around the town. The mayor, city council, and numerous businesses were opposed to making changes to address inaccessibility in the town. I talked with the mayor and other city officials — and of course, the lawyer and his wife — and did a lot of snooping around with help from my wife, who took photos. It was all true. The town was blatantly opposed to the federal law that supposedly guaranteed our civil rights nearly ten years post-ADA, so much so that the city council voted to pay the city attorney hundreds of thousands of dollars to fight a lawsuit rather than spend it on accessibility upgrades. Even today, the national Chamber of Commerce of our nation opposes much of the ADA.

There has been much progress since WWII, but the root of lack of awareness — ignorance — is still with us. Most people still don’t know anything about SCI injury levels and common complications, including doctors, legislators, and other policymakers. The public still holds low expectations and outdated stereotypes. CMS, the mammoth bureaucracy that controls Medicare and Medicaid rules and regulations, still limits wheelchair coverage using the “in-the-home” rule, based on the idea that we only need basic wheelchairs for use in our homes. Exceptions are sometimes possible, but only through a rigorous multi-appeals process.

The lack of awareness that began with pity, ignorance, and a head-in-the-sand attitude is still with us. Progress has come slowly and not without considerable advocacy. What is lacking is a focus on specifics. We need to get rid of generalizations and lingering stereotypes. One of the best ways to do that is with true-life stories, and not only about “inspirational” cripples and supercrips. The public needs to know about the everyday obstacles we face and what can be done to bring about true equal rights for SCI survivors. The meaning of “success” that normally applies to us needs to be re-defined. We can’t all be attorneys or Paralympic athletes, but we can be productive citizens, even if we are unable to work. We can lead happy, fulfilling lives.

These are the kinds of stories we need to tell, and we need to tell them forcefully, in greater numbers, with clearly-focused advocacy strategies. For instance — and this is a topic of utmost importance — what can we do about the current assault on our most precious right, voting access? How can we raise the level of awareness of legislators who seem to have no understanding of our everyday needs and little concern about the ways these newly-enacted laws make it difficult for those of us with SCIs to vote, especially quads? It has never been easy for us to vote, and now it is going to get harder.

The truth is, for us, every day is Spinal Cord Injury Awareness Day.

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 my early post-SCI years, as part of a compendium of my writing over the past 30 years, can be read at my website — All You Need —

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.