World SCI Day, Tuesday 5 September 2017

To mark World SCI Day on Tuesday 5th September Chair of the Spinal Injuries Association, Michelle Howard, offers her thoughts on progress made to date to secure a fulfilled life for everyone affected by spinal cord injury and how much more work remains.

A colleague was telling me recently how as a child he used to have to travel in the guards van of the train that would take him to his spinal consultant. For a child in the early 1970’s, he said, it was a huge adventure. As an adult he now knows it as an appalling example of discrimination, and inaccessibility that wouldn’t be tolerated today.

As we mark World SCI Day the story got me thinking about the journey we’ve been on and how far we’ve yet to go before everyone with a spinal cord injury truly has the opportunity to lead a fulfilled life.  There’s much to appreciate, not least that life expectancy for someone with an SCI is now broadly close to average – something Dr Ludwig Guttmann the pioneering medic who recognised the value of sport and physical activity in supporting rehabilitation could only aspire to.  People now walk away from a car accident that may previously have left them dead or seriously injured. Better diagnosis of illnesses that affect the spine are helping more people receive the specialist care they need and deserve.  For some, those illnesses are so serious that they would have died just a few years ago yet now they are living, but with an SCI.  The remarkable advances in science in the last 30 years provide optimism for the future. We’re seeing innovations such as exoskeleton walking aids but it’ll be a while yet before they’re cheap enough or practical enough for widespread use. And then there’s talk of a cure for spinal cord injury. Stem cell therapies to repair a damaged spinal cord are now an exciting possibility.  Robotic technologies that support people to take more control of their lives and be independent are now a near certainty. Meanwhile the profile of our Paralympic stars is something that was barely conceivable 20 years ago.

There’s certainly been progress and we need celebrate that and the efforts of all those who made it possible. Yet it’s clear that for too many people life is much tougher than it ought to be. The Equalities Act 2010 protects people against discrimination in the work place and in wider society, yet its implementation is patchy and fails to touch many other areas of inequality.

Someone with a disability is twice as likely to be unemployed as a non-disabled person. Nearly half (43%) of the British public don’t know anyone who is disabled and the majority (67%) feel awkward around disability.  The representation of disabled people in the media is very slowly improving but stereotypes remain that don’t show the full breadth of the SCI experience. As for business? How many people with an SCI or with other forms of disability get to senior management positions? I’m very proud to have been the Chair of NHS Swindon for eight years, but when I went to conferences with other Board Chairs, I was the only disabled person there.

As a user led charity, the personal experience of our members gives us an expert voice and shapes our views. We’re very clear on the future we want to see. The level of unmet need we see remains considerable. Advances are welcome and should be celebrated. But they must be made available for everyone. For someone struggling to get the NHS to fund a package of care, or meet even basic needs, the likelihood of a walking exoskeleton is pure science fiction.

SCI people have a keen sense of their own needs and the level of support they need. As empowered citizens and the best experts in their condition and care, their views must be both heard and acted upon. Whether in social or healthcare, business or the public sector decision makers must really deliver on their promises. When they don’t we must hold them to account.  Hard earnt advances must not be rolled back under the cloak of anti austerity measures. Fair access to the care and support that SCI people need and deserve must remain our first priority. We’re hearing stories of cost cutting measures that are reducing the amount of care SCI people receive with some even at risk of being sent to a residential home against their will. In the 21st century, that’s just plain wrong.  We need to see more disabled people in work using their talents and skills and benefitting from the independence, self respect and income that this brings. I’m very proud of being a tax payer for over 25 years now. Not everyone can do so, but for those who are able, a lack of training, education, or support in finding or keeping a job should not be a barrier. And we shouldn’t demonise those who can’t.

We need to ensure that people with disabilities, including SCI, can participate fully in the political process, able to make their views known to politicians. As so many polling stations are not even fully accessible, dealing with that issue would be a welcome development in reducing exclusion. Next, we need meaningful and productive engagement with the public sector, not the casual box ticking so often seen.  We need more SCI people on our screens and behind the scenes working to ensure that the full diversity of our community is heard, closing the gap between how we are portrayed on screen and the reality of life as an SCI person. We’re complex, nuanced and interesting – and that needs to be seen.

At the Spinal Injuries Association, we know that being the leading voice of the SCI community, isn’t just an honour, it also carries huge responsibility. We’ve robust plans in place across our campaigning, advocacy and support teams to help SCI people lead fulfilled lives and we’re working at pace and with vigour to make those plans a reality.

We live in a country that is now more comfortable with itself than ever before. It tolerates and embraces difference in a way that was almost unthinkable a generation or two ago. So if you’re gay, muslim, black or disabled there’s a bit more space for you than before. This didn’t happen by luck. Yet the difficult truth is that considerable unmet needs and unfairness remains. And whether you’re directly affected by SCI or not, that should continue to concern us all.