A recent poster put out by SCI BC (Spinal Cord Injury British Columbia) has caused a bit of a stir. While the poster mentions a lot of important facts about spinal cord injury, including letting people know that SCI is more than just 'not walking', it ends with the line which causes the controversy.
"It's not about a cure. It's about quality of life."
I think that many of us in the SCI community have taken this to mean that a cure is not necessary as walking is not the problem. Therefore if you fix the secondary issues, you have created a Good quality of life and forget the walking part.
Many of us believe that this is kind of logic is crazy. We all agree that secondary complications do reduce quality of life ALONG with not walking AND/OR not being able to use your arms. The difference is that we think cure IS quality of life. Cure paralysis and you cure the many problem that go along with it.
But before causing an uproar, it would be best to go to the source and ask what this line from the poster actually means. So I've written to Executive Director Chris McBride and Chairperson Edward Milligan and hope to published their response.
Dear Messrs McBride and Milligan,
My name is Dennis Tesolat, a Canadian living in Japan and a paraplegic. I write a blog at www.StemCellsandAtomBombs.org about paralysis cure. The blog is aimed at both educating people about paralysis and cure as well as getting the community involved by giving people a voice in how government, foundations, and other organisations deal with the question of cure.
Lately I haven't put the work that I should into this project as I've also been dealing with many of the secondary complications you mentioned in your recent poster about SCI. I was happy to see your organisation educating people about these issues. It's very true that when people see those of us with SCI, paraplegics especially, that they think it's all about walking, so it was good to see the poster list off the other forms of torture we live with.
I also feel that I should let you know that the poster has created a bit of a stir among cure activists. The bottom part carries the line, "It's not about a cure. It's about quality of life." Many have taken this to mean that SCI BC doesn't believe that a cure is necessary, or at least not a priority.
Therefore I would like to ask you to clarify the meaning of this line and SCI BC's position regarding cure. I personally would like to hear that your organisation's position is that cure IS quality of life and that we have misread your intention, but of course, SCI BC will have its own policy.
I look forward to receiving and publicising your response.