Lessons From Our Peers

Posted by Michael Collins in Life After Paralysis on October 04, 2015 # Quality of Life

Most bloggers seek to educate, motivate or entertain, and once in awhile we try to combine all three. For those of us writing blogs for the Reeve Foundation, our life experience makes us uniquely qualified to focus on paralysis and other significant disabilities as we know about them firsthand and professionally. Sharing the lessons we have learned in a manner that is understandable to most of our readers is done in the hope that other lives will be made better as a result.

If I can help keep someone else from spending as much time as I have learning the secrets of spinal cord injury survival, or helping to move them closer to the time that they can begin to relax and enjoy life, even if they are disabled, then this has all been worth it. The family members reading our blogs, or professionals who might do so on a regular basis, should begin to understand how best to share our lives or make them better.

It is not always easy to pick one subject from a long list of potential issues which need to be discussed then write about it in a manner that makes sense to most readers. Besides concerns that continue to frustrate us, there are often current events, proposed changes to laws, and the inevitable negative results of political inaction that spur us to write about them.

We cover everything from Accessibility to Ziplining, just in case it might spur somebody to become involved or to try something new for the first time. In some of those pursuits it helps to know that we are not alone, and that other people have tried it successfully. We also try to provide more information about how to become part of a movement, or simply to make a difference in the reader's own world, as this knowledge can be all of the empowerment that is needed.

Even though our blogs are relatively short, it can take quite a bit of effort to do the research and to evaluate how best to share the chosen subject with all of you. In the scope of things, writing a blog when compared to what it takes to write a book is similar to earning a kindergarten diploma when compared to earning a Ph.D.

These thoughts came about because of the fact that my home bookshelves are populated by works from my peers, even though I didn't know or meet some of them because they were before my time. Many of those books are first-person recounts of their own lives lived with a variety of disabling conditions. Only a few of them made any best-seller lists, but that was irrelevant to those of us who took the time to read them.

While I have been fortunate to know many of those authors, other volumes were given as gifts from friends and relatives in the hope that I might gain from reading them. I have done the same by gifting some of the more exceptional books to people who might be struggling, as it is never easy to deal with the unexpected onset of any kind of disability, no matter what the cause. As a result, several other books written by our peers that I have read are not listed here as they have moved on to new homes.

The following books are listed by author, alphabetically, and otherwise unranked:

Jean-Dominique Bauby:

The Diving Bell and the Butterfly: A Memoir of Life in Death

Arnold Beisser:

Flying Without Wings: Personal Reflections on Loss, Disability, and Healing

HolLyn D'Lil:

Becoming Real in 24 Days (One Participant's Story of the 1977 504 Demonstrations)

James R Harding:

ADA Adventure

Now What?

John Hockenberry:

Moving Violations: War Zones, Wheelchairs, and Declarations of Independence

A River out of Eden

Laurie Hoirup:

I Can Dance: My Life with a Disability

Richard Holicky:

Roll Models: People Who Live Successfully Following Spinal Cord Injury and How They Do It

Taking Care of Yourself while Providing Care: A guide for those who assist and care for their spouses, children, parents, and other loved ones who have spinal cord injuries

Mark Johnson:

I Love Today

Gary Karp:

Life on Wheels

From There to Here

Disability & The Art of Kissing

Ron Kovic:

Born on the Fourth of July

Paul Longmore:

Why I Burned My Book and Other Essays on Disability

The Disability Rights Movement

The New Disability History

Nancy Mairs:

Waist High in the World: A Life Among the Nondisabled

Kevin McGuire:

Patrick

Christopher Nolan:

Under the Eye of the Clock

Saralee Perel:

Cracked Nuts

Christopher Reeve:

Nothing is Impossible: Reflections on a New Life

Still Me

Allen Rucker:

The Best Seat In The House: How I Woke Up One Tuesday and Was Paralyzed For Life

Robert C. Samuels:

Blue Water, White Water

Greg Smith:

On A Roll: Reflections from America’s Wheelchair Dude with the Winning Attitude

Shut Up! Silencing the Negative Voice Within

Karen Stone:

Awakening to Disability: Nothing About Us Without Us

Mark Wellman:

Climbing Back

Jonathan M. Young:

Equality of opportunity: The making of The Americans with Disabilities Act

If you have read this far, you probably noted that this list is relatively short and might be missing a few of your favorite advocates/authors. Those authors also spent much time, effort, and perhaps expense, to put their thoughts on paper or type them into a computer. Writing a book is no easy task, and many of us have not done it because of the time and focus required in comparison to what other pursuits we are involved with on a regular basis.

Most of these authors did not gloss over the intimate moments, hardships and lessons learned by living life with a disability. Writing honestly about one's life does not allow that. By their very nature, many of these books are inspirational or motivational without having to mention the words.

This exercise made me reflect on the time that I had the opportunity to interview Dr. Paul Longmore for a video we made while I was executive director of the California State Independent Living Council. The walls of his apartment were lined with bookshelves, and those were filled with literally hundreds of books regarding disability and the disability rights movement. He was a key leader of that movement, and has fittingly been honored with an institute in his name at San Francisco State University, where he taught. My collection is miniscule by comparison, and I know that many of my peers have assembled many more volumes while learning about these same issues.

We can honor those who spent so much time writing these books by reading them, and should do that if we want to know more about the issues that they discussed. Purchasing a copy, writing a review, or even sending a congratulatory note are also positive steps: an option for any budget. If your local library, especially if located in a school or university, does not have a copy of something you want to read please do everyone a favor by requesting that they purchase a copy.

If your favorite peer-written book (even if you wrote it) is not listed above, feel free to tell us about it in the comments section below. Remember, this list is not meant to be all-inclusive; it is simply what I can see when looking at my bookshelf while parked at my desk.

Do you have a similar collection?

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