Getting Attention

Just 10 days from now the staff and Board members of Unite 2 Fight Paralysis will gather for a combination board member training, advocacy workshop, and strategic planning session. Because we are scattered around the country, we try to meet for a weekend retreat like this every couple of years. It gives us a chance to evaluate all aspects of our operation as well as build strategies, momentum, and energy to carry our vision into the future.

As lead facilitator for the weekend, I’ve been doing a lot of reading in preparation. Sometimes the job we’ve undertaken (achieving a cure for paralysis after spinal cord injury), seems so immense that it’s hard to know where to focus. Just in time, a colleague of mine prepared a summary of “Back to Basics“, with pointed takeaway questions for the SCI cure movement.

“Back to Basics“, written by Michael Manganiello and Margaret Anderson, chronicles the rise of the HIV/AIDS advocacy movement, considered to be the finest, most successful model of patient advocacy in our history, one that turned AIDS from a death sentence into a manageable condition in just a few years.

The AIDS epidemic was truly a matter of life and death, creating a motivation and urgency that drove patient advocates. What began as an emotional, grassroots reaction to a dire condition blossomed into an effectively organized, educated, and well-constructed movement with lessons for all of us.

It’s revealing to note that the very first issue addressed by AIDS advocates was getting ATTENTION, or “creating the will to transform policies”. In truth, we are still in our infancy in bringing attention to the need for a cure. We are transitioning from the fight for disability rights and accessibility to the fight for a cure. We’re still trying to convince members of our own community, let alone the general public, that we can and should achieve a cure.

How do we start getting attention? The HIV/AIDS movement employed civil disobedience to great effect, but is that realistic for the SCI community where health and resources are so compromised? I think we can begin by taking ownership of the word “cure” and using it in all of our messaging and communications. We are trying to change consciousness, both internal and external to our community, and develop belief.

If you’re serious about cure advocacy, I recommend that you take the time to read “Back to Basics” in its entirety. At the same time, keep an eye out for a showing of “How to Survive a Plague“, the Oscar-nominated documentary about the HIV/AIDS advocacy movement. It is currently in limited release at theaters around the country.

Unite 2 Fight

A few days ago I received an email from another advocate who I am just getting to know.  He had heard that the U2FP Board of Directors was meeting for its annual weekend retreat, and generously took the time to share his perceptions of our organization and the cure movement in general.

Our name, he said, initially grabbed his attention, and he reminded me of our founders’ discussion of a name and what words were important.  Aside from the attraction of alliteration, we chose “Unite” and “Fight” because we believe these verbs describe the fundamental actions our COMMUNITY must take to advance the science that will achieve curative therapies.

In the words of my correspondent, Dennis,

“Smart people, flashy websites, good scientific knowledge, etc are only tools, but without unity, these tools will not work.”

“Like the best computer in the world is meaningless without someone to operate it, the scientific elements to beat paralysis will be meaningless without people willing to fight to bring it to the bedside.”

We often hear that the spinal cord injury community is too fractured, impoverished, and apathetic to galvanize – a perception that U2FP is working hard to dispel.  Dennis is active with a small craft union where he lives and works in Japan.  He draws a parallel between the early labor movements in the U.S. and our current efforts to organize people living with paralysis. 

“When the industrial unions were being formed in your country there were a lot of craft unions already around. The answer of the craft unions to industrial workers was that they were impossible to organize. ‘How can you organize a bunch of poor whites, blacks, and illiterate immigrants into one force,’ was their refrain. Well, others recognized that this group was not disparate but had something very much in common; to better their lot in life. This movement, whether you like unions or not, ended up transforming society and the lives of millions.”

At this moment in time, the science of regeneration and restoration is ahead of the funding and advocacy that will bring therapies to human application.  If we want to translate the science from rats to humans, we as a community need to get busy talking, writing, raising money, and uniting to fight for the cure.  It will not be handed to us.

Read more from Dennis at his blog, StemCells&AtomBombs.