By Reveca Torres
I will have to be honest and say that I was a little bit intimidated prior to attending the Working 2 Walk Science and Advocacy Symposium in Boston last weekend. The symposium brings together research scientists, practitioners, investors, advocates, SCI survivors and family members to share knowledge and encourage collaboration between all the stakeholders committed to reaching a cure for spinal cord injury.
If you missed it, here’s a recap!
I do not have a science background; in fact, I was always pretty lousy at it in school. It made me nervous to be around such smart people and not be able to understand their research. But, I was pleasantly surprised I understood the general idea, methods, results and future goals of a majority of the scientists. They have worked hard to find answers and make advancements in the field. I appreciated that they shared positive results as well as failures.
I have been injured 18 years and the focus of my energies changes over the years. When I was initially injured, I was very invested in finding a cure and fundraising to fund research. As years went by I switched my focus to going to college and finding a job. I worked in the arts and simultaneously did advocacy work related to education, health, disability, and policy. Later, I discovered exercise based therapies in relation to spinal cord injury recovery and it became important to me- to gain independence, confidence, and live a healthy lifestyle. I have not thought of a cure for a long time. When a friend told me about the symposium I felt like I needed to go. If anything, I would learn something new and meet new people.
In the world of disability/SCI there are opposing views on finding a cure. Some people think that as persons with a disability we don’t need a cure, we should be accepted as we are, funding should go to quality of life programs or improving access to education, housing and employment rather than fruitless and costly research. Other people think that we should gather every penny we find and put it into research and keep doing so until a cure has been found. What is the answer?
I have debated this because having lived over half of my life with a disability I’ve come across people who feel very strongly in their position, but I really see value in both. I appreciate organizations like the Christopher Reeve Foundation and the Craig Nielsen Foundation who will focus their efforts on finding both a cure and funding very worthy quality of life programs. So going back to the cure, I heard presentations about altering genes to promote nerve growth; restoring bladder function; functional electrical stimulation implanted in the spinal cord; assistive technology used in conjunction with therapies, etc. Every scientist finished their presentation with optimism and willing to work together to make things happen. And this brings me to advocacy.
I attended a breakout session focused on advocacy and one of the speakers said “we are a fractured community” and it really stuck in my mind. I will begin in the literal sense, our community is made of people who have been physically broken and felt like they have lost everything. After the injury people need to find the right pieces and put them back together in a way that works for them. There comes loss, isolation, and denial. Initially many want to continue to believe they don’t have a disability or a need to associate with this club that we never asked to be a part of.
We cannot have power in numbers, we cannot make change, if we aren’t coming together. Even those who have years post injury and have figured things out and get along with their lives just fine, I believe you still have a responsibility to advocate -whether it be related to a cure, mainstream programming for the Paralympics, accessible housing, a right to education, equality in the workforce, disability in Hollywood, or whatever, we’re responsible!
We have a responsibility to learn new things and try and understand where people are coming from. We don’t necessarily have to go protest, it’s as easy as educating a friend, neighbor or stranger. Like I said, I had not been part of the finding-a-cure community for years but I felt it was important to attend the symposium. I learned more about research but also government funding and red tape or legislation holding us back from new therapies or advancing technologies. I felt a bit of guilt and shame- maybe I have been part of the problem. By not being active I have not participated in a solution.
I don’t know if a cure will come in my lifetime, and if it does, if I will be willing and ready to take that step, however, if I can do my part to get closer I will. And, for those who stand or sit on one side of the CARE or CURE floor, stop being boring, this party is only going to get awesome if we’re all out on the dance floor together!
* United 2 Fight Paralysis is an organization founded in 2005 by six amazing women. Three of those women had a spinal cord injury themselves, and the other three have sons with spinal cord injury. They are a unique advocacy organization bringing together key players who can advance the best therapies as quickly as possible.