Out of Touch and Different?

In recent weeks I have been re-energized. The Fall is my favorite time of year. The crisp air, fall colors, and knowledge ski season is around the corner has me waking up well before the sun comes up. I mostly read when I get up and the other day I looked forward to reading a new publication, Life in Action. Edited by Ian Ruder, Life in Action replaces SCI LIfe and Action, publications of the NSCIA and United Spinal Association. I am not sure what to make of Life in Action. One could argue it is a bad time to launch a new print media publication. On the other hand, I assume the two organizations will share the cost of publication and have in reality eliminated one print media publication. Regardless, I will read Life in Action with interest. I think the publication is for those new to spinal cord injury and those in the business of rehabilitation--particularly spinal cord injury. I base this on the ads and content. Large full page ads for prestigious rehabilitation hospitals abound as do ads for durable medical goods.

Life in Action is a perfect publication to leave in the waiting room at a rehabilitation hospital. If one wanted to tap into what is going on at this moment in spinal cord injury this is the publication to read. National in scope, there are many photos of smiling paralyzed people doing a variety of activities. This must be heartening to a newly injured person and his or her family. I can readily imagine a person who knows nothing about spinal cord injury being encouraged and empowered to tap into the vibrant adaptive community. All this is good but I find myself feeling disconnected from the world of rehabilitation and the newly injured. I guess I am old school--I went through rehabilitation a long time ago, before pretty rehabilitation centers in the suburbs existed. My rehabilitation was hard core. I was told you will never walk again, period and exclamation point. I was told never ask for help by therapists. Independence was key, anything else was frowned upon. The physical environment was depressing in the extreme. Frankly, I was scared to death and worked my ass off to escape from rehabilitation and get to college with my peers. In short, rehabilitation sucked. It was a way station where I could learn how to function independently and move on with life. I have no fond memories of rehabilitation or that time period. Rehabilitation is very different today. It is short--shockingly brief. Thanks to insurance companies a newly injured person once medically stable gets a few weeks of rehabilitation. If they are lucky they get additional out patient therapy. The physical environment has changed too. Many centers are quite pretty. I have mixed feeling about this. I can well imagine these centers are like akin to a haven of acceptance. People may not want to leave and the fear I experienced likely absent. There is nothing like a morbid and physically decrepit environment to motivate people to get out and resume their life.

One blurb and survey results made me feel apart from those recently injured. The survey was conducted by the NSCIA. Over 700 people responded to an inquiry about what they would like to read about future issues. The results were stunning. Radically different from what I would have guessed. The top ten topics people want to read about are as follows:

Assistive Technology
Health/fitness
Cure research
Travel
Access
Advocacy/legislative updates
Recreation
Home modification
Coping tips and strategies
Health care legislation

In a word, wow! No mention of employment or education. Health care legislation is tenth! Cure is third! Home modification is eighth! God luck getting in the door of your own home. I am stunned. Utterly taken aback. I am led to speculate that the above results are heavily skewed by newly injured people. I would also speculate what I call the cure industry has gotten its hooks into the rehabilitation world. A lasting legacy of Christopher Reeve perhaps or maybe a high profit margin in cure?

I can assure you we old timers (hard asses?) think very differently. However, I will concede I may have had similar views circa 1978. What changed and how did my views become radically different? I read Robert Murpy's book The Body Silent. This book changed my life. In one afternoon I realized my problem was not paralysis but the social response it created. Here lies the real problem with the survey results. Who is teaching and guiding the newly paralyzed people about the realities of paralysis and the social stigma associated with wheelchair use? I would venture to guess no one. What can a newly paralyzed person learn in a few weeks of rehabilitation? Not much. I had months of rehabilitation. Over those months I learned any paralyzed person who was cool cut off the handles to his or her wheelchair. I learned how to manage my bowels and bladder--these lessons did not come from nurses or doctors but other paralyzed people. I learned how to drive with hand controls. I figured out how to get dressed and avoid skin breakdowns. I learned folding wheelchairs were crappy, E&J was horrible and to get a rigid frame wheelchair. I learned how to change a tire on my wheelchair. In short, I learned how to live independently. And I learned the most from my fellow paralytics.

Do not think I am glorifying the olden days of rehabilitation. It was very different and by contemporary standards sub basic. People were essentially experimenting and making it up as they went a long. The medical model of disability ruled the day and the concept if disability rights did not exist. In this cultural milieu we newly minted cripples thrived and learned hard life lessons. Foremost among the lessons learned were a fierce independence streak and the ability to assert ourselves. We expected nothing of others, people without a disability, and railed against the social bias we encountered. It is these large and small lessons that I worry newly paralyzed people are not learning. This leads me to make a suggestion I doubt will ever come to fruition. Expose my generation, old timers, and disability activists such as ADAPT and Not Dead Yet to the newly paralyzed. We have much to learn and gain from such a meeting. The disability rights movement will benefit from new ideas of recently paralyzed people. Those of us that have lived with spinal cord injury for decades can speak from experience and perhaps derail problems before they arise. This idea has been present in my mind for a long time. I do not think newly paralyzed are ready for the harsh reality they will encounter in an ableist world. The ADA may be the law of the land but it is rarely followed. Discrimination is rampant and it takes time to learn how to cope with bias. These sort of lessons are well beyond the realm of medical professionals. It is this peer to peer connection that could foster change. Ed Roberts, founder of the independent living movement, knew this and tried to implement it in the 1970s. He called it cripple power. An apt name. I hope to see cripple power rise in my lifetime.