Thoughts on Christopher Reeve and The Passion Worldwide for Finding a "Cure" for Spinal Cord Injury

By Dan Wilkins
Published: June, 2003

The following article expresses the views of the author and not the administrators, moderators, Board of Directors, webmaster or the National Spinal Cord Injury Association. To read our full disclaimer, rules to post and submit articles, and other announcements from NSCIA, click here.

I write this, first, as one living proudly with a spinal cord injury and, second, as a national board member of the National Spinal Cord Injury Association. NSCIA, founded in 1948, is the nation's oldest and largest organization dedicated to improving the quality of life for the hundreds of thousands of Americans living with the results of spinal cord injury and disease (SCI/D) and their families, a community that grows by thirty newly-injured people each day.

By providing an innovative Peer Support Network and by raising awareness about spinal cord injury and disease through education, NSCIA educates and empowers survivors of spinal cord injury and disease to achieve and maintain their highest levels of independence, health and personal fulfillment. With programs that include injury prevention, improvements in medical, rehabilitative and supportive services, research and public policy formulation, NSCIA's educational mission endeavors to address information and issues important to our constituency, policy makers, the general public, and the media.

Regarding the CARE vs. CURE issue, there has always been an on-going discussion within the disability community about the philosophical distinctions between the two goals. At the most fundamental levels, the philosophy of CARE focuses primarily on providing people with disabilities, their families and friends with resources, support, and opportunities to fully participate in and contribute to their communities, to live full and fulfilling lives, while managing the extrinsic physical and social inconveniences of living with a disability. The CURE philosophy places its primary attention on raising money to support research, with the goal of achieving a cure someday for those conditions or disabilities affecting the spinal cord.

NSCIA actively supports both philosophies; however, we've seen that programs involving CURE receive more attention from the mainstream, primarily because it seems like common sense; because, since the beginning of time, the dominant social mindset has always considered people living with disabilities as a burden, as less valuable, a curse or in need of repair. Since Christopher Reeve became a quadriplegic in 1995, there has been a divergent tension between those of us living successfully with a disability and those of us supporting Reeve's single, outspoken focus on research, cure and walking by any means necessary.

Speaking of “us”, our society, yours and mine, as a whole is a blend of many cultures. Disability Culture, comprised of people, families and friends experiencing disability as part of their lives, is one of them. Within Disability Culture, as within any culture, there are many people and many dreams. Christopher Reeve is one who dreams of a cure. Though, by perceiving disability as a problem to be eliminated, his dream perpetuates society's "fate worse than death" myth, to deny Christopher his dream of walking again, of leaving his disability behind, would be as discriminatory as someone denying us our dreams of living in and contributing to our community just as we are.

Society needs to understand that, of the nearly sixty-million belonging to this U.S. Disability Culture alone and millions more around the globe, those who dream of cures are far and away in the minority compared to those who dream of acceptance and access to all that their society and community has to offer. The majority of us with disabilities are comfortable in our skin. We see ourselves as unbroken and not in need of "fixing". We are proud of our disabilities and of the wisdom and perspective gained from the experience. The majority of us, along with our friends and family, dream of the equity and respect that comes from a community that has expanded to include and accommodate all of its people.

It is a matter of two different dreams. One dream sees the person; or more precisely, the disability as the problem. The other, more widely held dream sees society itself and the environment as the problem; with its lack of attitudinal, architectural, political and programmatic access. The former sounds logical, based upon archaic misconceptions of what life “must be like” for those living with a disability: "Of course one would want to be healed." The latter demands we, as a community, step back and take a look at the bigger picture, at how we perceive and treat people who get around or see or hear differently. It demands we take responsibility for our thoughts and actions, the baggage we carry, and for the history of exclusion and segregation. It is discrimination and it must end.

When we, as a “whole” community, begin to see and understand that living with disability is a natural part of the human experience and condition, not a bad thing, just a different thing, with many of the same ups and downs and all arounds as a life without disability, we begin to see the importance of our supporting, financially and otherwise, the bigger dream of fixing the world and not the person. It is big enough for all of us and for all of our dreams.

Regarding "cure"; most experiencing spinal cord injuries dream the dream of recovery early on. This is normal and, considering society’s general misperception of life lived with disability, understandable. What happens, hopefully, is that, after a time our definition of "recovery" changes, and we become something more. The desire to be "cured" is tempered by a larger, bolder desire, the desire to get the most out of the life we are now living. As victorious survivors of traumatic and sometimes horrible experiences, we celebrate our survival and the wisdom that comes from such experience. Our dream shifts toward getting on with the business of living life to its fullest.
Anais Nin said it best: "And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom."


For more information regarding this philosophy of well-being and living life fully with disability please click here for FREE membership in the National Spinal Cord Injury Association. Join with us as we fight to achieve real balance in the debate and insure that there are adequate resources for CARE, CURE AND COMMUNITY!

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