Nothing About Us Without Us | Louise Wright on the ISCOS conference

24 October 2016

Influencing, International, Stories

Our CEO, Louise Wright, recently attended the annual ISCOS conference in Vienna with Will Clark, a volunteer and service user with a high level injury. In her blog, she reflects on how organisations need to support everyone affected by spinal cord injury

‘Nothing about us without us’ is a helpful phrase that helps define our recent experience at the International Spinal Cord Society (ISCOS) held last month in Vienna.  By ‘our experience’ I mean that of Will Clark, a fabulous Back Up volunteer with a C4 spinal cord injury, and myself.

Over the years that I have been lucky enough to attend this interesting and informative conference, I’ve noticed two things:

  • The lack of people with spinal cord injury in attendance
  • No power chair users – anywhere!

As I listened and watched presentation after presentation, I saw plenty of graphs, pictures of the spine, photographs of the odd young person in a manual wheelchair, but there seemed to be a whole raft of people missing.  Where were the people who walk?  What about people who use a ventilator and older people?

I spoke to many organisations, like Back Up, doing fantastic work on the ground in countries like Sweden, Greece, France and Norway; but the answer was always the same.  People with high level injuries don’t want to use our services, or it’s too complicated to include people with these needs, or too expensive – or all of the above.

At Back Up, I’m proud to say we always prioritise people who are most likely to struggle to get the support they need. 

This means that if you have a spinal cord injury and you use a power chair, or have high care needs, we will go the extra mile to ensure you are properly included.  You want to go skiing? We have courses for people with all levels of injury. What If need help going back to school?  We’ll be there to help you make that transition. What if you don’t use a wheelchair and can walk? We have someone you can talk to in a similar situation.  We pride ourselves on being an organisation for everyone affected by spinal cord injury. And if we can’t provide support, who will? We need to set the standard for others to follow.

And so, our plan for someone with a high level injury to present at ISCOS was formed.  We had a false start in 2015, when our presentation wasn’t accepted. But in 2016 we got the thumbs up to present and Will Clark accepted the challenge on our behalf.

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Will keeps telling me he’s still new to the world of spinal cord injury, having had his injury in 2012.  But, he’s packed a lot in and was able to share his breadth of experience to a few hundred people on the first day of the conference.

Will talked with passion about the experience of being fully included – it made him feel like the world was his oyster and that, with creativity and some planning, he could do anything he set his mind to.

The audience, made up from similar organisations and health professionals, started to think through what inclusion could look like for them.  We’ve since been in touch with organisations in Germany, Sweden, Norway and Greece.  Will and I hope that his speech will mean that people with high level injuries are no longer left out by the very organisations that are best placed to support them across Europe and the Americas.

Will’s speech was a moving and insightful account of life with a high level injury – something I could never convey. I opened the door, but it was Will who went through it and made the difference.  Thank you Will.  Louise