Challenging Expectations Gaining Impact

In late October I had the opportunity to attend the 5th National Spinal Cord Injury Conference: Translating Neural Engineering and Novel Therapies. My interest in attending this conference comes from a position of a consumer and as a support to others with spinal cord injuries and it is from that perspective in this article originates, however it is not where it ends.

Attending this conference challenged my expectations of content and thought by providing an appropriate mix of the medical versus real life experience and/or real-life management. This mix acknowledges that people living with spinal cord injury will continue to experience life and the emphasis is to improve quality of life far beyond just onset of their injuries but holistically looking at the management of life after injury, from discussions of diet, involvement in physical activity and the treatment of pressure ulcers to a discussion of how important informal networks are for people with disabilities and lastly an understanding  of the progression of research pathways in spinal cord injury research. The challenge to my expectations was good because the challenge open my mind to new possibilities and reach the goal I set for myself.

 The goal, gain knowledge so I could better support those around me, was accomplished. But there was so much more. In the community it is sometimes difficult to see impact because it becomes a little like not seeing forest for the trees. Attending this conference allowed me to see the impact. The greatest impact to my knowledgebase was an understanding of the research pathway for spinal cord injury as explained by Dr. Brian Kwon and the introduction to research materials such as SCI-U and spinalcordessentials.ca.

Beyond the discussions and resources I must acknowledge the fabulous experience I had meeting people and connecting personally, making the whole experience an enjoyable one. Lastly I would like to thank CPA Ontario and conference organizers for supporting consumer participation and attendance.

 

The Power of Talk

I know it has been a long time since I have written.  The reasons why are vast so I won't bore you with the details except to say that it was not that I didn't have material and subjects to write about but the opposite, issues cropping up one after another that I had so many things to write about I couldn't choose.

Joni Erickson Tada wrote in her book, "Secrets Strength", that it takes patience to live comfortably and adequately with disability.  She recounts that rather regularly she contends with her own feelings about how the people around her provide her care and help her with daily tasks.  Life is no less full because she needs help and she has adjusted to life with other people in it doing the things that people usually are able to do for themselves.  

Recent events have caused me to stop and think about the dynamics of care and what that means for people with disabilities.  

First, I am a child of the 1970s and grew up under the tough love rehabilitation model.  Translation we only ask for help when you really need it and if you need help you've given up or given in to your disability.  Second, there is no road map to being an adult with a disability.  Thirdly, the first and the second do nothing to encourage communication and a healthy supported lifestyle.  And the demons within are not the worst part. 

The worst part is not being supported through these very difficult transitions.  There are public programs of home care help but the aspects of community care are not a priority and are squeezed dry by sheer numbers and competing principles.  The result is the service is there for some but not for others and to get service done properly and live adequately you need patience and sometimes charm.  Moreover, people with disabilities cannot be dealing with care issues alone in silence.  We must allow ourselves to talk about it.  Talk about what goes well as well as those things that are going well.  Talk about strategy.  Share knowledge.  We need to learn the importance of support to each other.  We cannot be afraid to be judged or afraid to direct our own lives.  Above all else we need to start talking.  Having a disability is part of our lives not all of it.  The hardest part is feeling alone without support.  If we are able to communicate and close those gaps in support quality-of-life for people with disabilities would be and should be understood a little better.  So let's start talking!