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!

The Wisdom of Margaret Mead

Margaret Mead had it right when she said "Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. "Often when I hear literary quotes they sound nice but are hard to ring true to real life that is not true of this particular quote. This is a call to action. I have been lucky enough to see many instances in my life where small groups have made big changes. One such initiative is the formation and growth of the Global Network of Entrepreneurs with Disabilities (GNED). In a little over a year GNED has developed from a call for support over an Internet discussion forum to incorporation as a nonprofit in the bricks and mortar world. This is a unique start since people usually engineer their online presence after an organization has been created and in many cases running for several months if not years. But in my opinion this reverse engineering is only a small part of the uniqueness of this organization.

 

What makes GNED unique is its commitment to the betterment of people with disabilities worldwide through the innovation of entrepreneurship. As an entrepreneur with a disability myself, sometimes it feels like supports that are supposed to assist me with employment endeavours work against me. It is in these times that I am grateful for the peer support I have received from my colleagues at GNED, but even more than the peer support is the message that people with disabilities can run businesses and do so successfully. The message is a powerful one. One that the rest of the world has yet to hear but because of the work of GNED will hear more and more, louder and louder over time. It is my hope that after hearing this message the working lives of people with disabilities as contributing members of societies the world over will be forever changed for the better, as this may serve to increase independence and encourage personal autonomy for people with disabilities.

 

Prior to April 2010 the prospect of making it in business as a person with a disability was isolating. The isolation like silence was deafening. A year later, with the work of GNED and my involvement, isolation is not a problem and I feel a part of something great. Greatness is sometimes overrated but perhaps the greatest thing that GNED can hope to do is to inform and change the conversation when it comes to employment of people with disabilities from one of charity to one of the capacity for contribution to economic diversity.

 

The conversation needs to change and as people with disabilities we must remain committed to be shepherds of that change for a lot can be achieved through patience and perseverance. If GNED has taught me anything it has taught me to love my work again with a renewed purpose and sense of accomplishment. As GNED grows I'm hoping it can be of similar inspiration to others worldwide.