Do you remember the moment when you heard that Christopher Reeve had died? I do. It was early evening on October 10, 2004. I read it online: the most famous quadriplegic in the world -- and by far the most visible, effective advocate for funding research to cure paralysis -- was gone. For most people that was just a sad moment, an abrupt end to a life that had switched in an instant from fairytale to nightmare. In my community, that news was a kick in the teeth.
My community is people with spinal cord injuries and their families, a giant world-wide clan that nobody ever wants to join. Christopher Reeve mattered because he had resources that few of us could match: international fame, close friends in the media, personal wealth. He couldn't even breathe properly, but he stepped up and used those resources to advocate for more research, better research, faster research. Within hours of his passing, people were online asking one another who could take his place. Who would speak for us now? Would efforts toward a cure be abandoned, without that powerful voice pushing back hard against apathy and pessimism?
Out of those questions grew a grassroots organization called Unite2FightParalysis (u2fp), at first just a handful of people determined to figure out how to collectively raise their small voices in order to replace that single large one. One of the projects they deliver every year is a science and advocacy symposium known as Working2Walk (w2w).
“I thought the conference was incredible. I came away more motivated than I have been in years, and made some connections on the science side of things. I have been raving about it to anyone who will listen. I hope to be there next year, and I want to bring some people from my lab as well – they need to see this! I’m not sure I’m expressing this well but the point is that I’m fired up. It’s me who should be thanking all of you, it put the wind in my sails.”
Murray Blackmore, PhD, Working2Walk 2012 Speaker
My project is a book about that conference, specifically about the one that just took place (November, 2012) in Irvine, California, organized in collaboration with the Reeve-Irvine Research Center. One of the things that's become clear over the years is that it really is possible to help regular people become strong, informed advocates for a cure. It's just hard.
It's hard because life in a wheelchair is already indescribably weird, and because so many people's health requires them to accept the status quo and make the best of it. It's important to fight for them, and for the 12,000 people who are going to get paralyzed -- in the USA alone -- this year, and next year, and every year after that.
It's also hard to advocate for this kind of research because funds are limited, because the rules that govern human clinical trials are convoluted, because the spinal cord resists repair in a dozen different ways, because some of the necessary molecular science is still poorly understood, because there are people who waste time hyping undocumented cures, and because researchers often compete with one another instead of cooperating. Working2Walk is all about taking on those challenges. It's about engaging with the research community instead of waiting for them. It's about becoming part of the solution.
My book will showcase the power of advocacy and allow people to see how they can be part of it. Just like the Working2Walk conference itself, the book will highlight the best new science in clear, accessible language; there's plenty to be excited about from labs and clinics around the planet. And, just like the conference, the book will be full of powerful examples of people from the community who decided to work toward making the cure come faster.
Usually I spend my time at Working2Walk running a live blog that documents as much of what's happening as my fingers can capture, in real time. That blog typically gets many thousands of hits from countries all over the planet, as do the videos u2fp puts up later of some of the speakers.
I want to make a book because there are so many people who can't or won't take the time to read through a lot of internet pages or watch a series of videos. For a lot of us, a book is still the best way to get information.
A book is tangible evidence that someone cared enough to make a permanent, serious record. I want this book to be in the hands of people who staff rehab centers, hospitals, and trauma facilities. I want it to be in the hands of people like me. When my husband broke his neck in the spring of 2001, there was no international science/advocacy organization. There was no reliable one-stop shop to give us guidance about who to trust. There was no single well-educated, well-informed source to tell us the real story about progress in research, which was the very thing we most wanted to understand.
I'm a writer. A teacher once told me that the book you should write is the one you wish you could read; this is the book I want to read, and I know I'm not alone.
Risks and challenges
This will be the third time I've published a book through lulu.com, so I'm confident that I can manage that process. I'll be working on it alone from our home; if I get a big response I'll need to recruit some helpers to handle all the individual mailings and get them out the door in a timely way. I'll need to find some space to make that work and figure out how to compensate those people. I can do that.
The money (once Kickstarter, Amazon, and the IRS get their shares) is to allow me to turn down work from my regular clients while I write, design, produce and ship the book.Learn about accountability on Kickstarter
- (30 days)