People with cerebral palsy deserve their own ‘homeland’
For many years I have regarded my identity as a disabled person as being something very different to my identity as someone with cerebral palsy. I see who we are as a whole collection of identity labels that fluctuate depending on the situation we are in including our gender, our hobbies, our country, our town as so on. To some degree each one of our identity components requires validating by the connections with others with that identity to form culture and norms.
This means that I need organisations that satisfy my disability identity and organisationsthat satisfy my cerebral palsy identity. Unfortunately people with cerebral palsy are now the only major, and indeed minor, impairment group that does not have its own dedicated impairment focused national charity, which means that no one is acting as their voice on their issues.
People with cerebral palsy did have their own charity, it was called Scope, previously ‘the Spastics Society’. Founded in 1951, Scope was once a very big charity, providing what was ‘cutting edge’ services and support to people with cerebral palsy within an era where society and public services had no understanding of their needs.
Over the last 15 years, Scope has changed unlike any other traditional impairment charity, as it became politically embarrassed of people with cp, who were long out of fashion, and moved towards the ‘disability’ charity it is now, with no specific issue or impairment focus, cherry picking the issues it chooses to interfere in without a clear strategy. In this context, it is bizarre that Scope’s Chief Executive has recently claimed on Twitter that they interviewed every disabled person in the world ‘twice’, somehow missing me out.
The cost of not having a cerebral palsy national charity has been that there has been a lack of development of the services people with cp use to cater with their changing needs and desires. Due to improved birthing techniques, more babies with severe cerebral palsy are surviving and growing into adults with new and often complex needs. Mainstream education as well as living and working within everyday society, as opposed to safe residential care, brings additional physical and emotional pressures that creates new health issues. While the effects of cerebral palsy overlaps many other impairment services, it needs a voice for its specific complications and that has gone. The result is ill informed professionals now fail to understand how their actions can deteriorate the health of many people with cp.
Scope’s answer to the fact they are no longer a cp organisation is that people with cpcan always set one up themselves, but why should we when that is what parents did in 1951 to form Scope? Over the last 60 years, families, friends, people with cp and celebs have donated money and assets to Scope on the condition it would be used to support people with cp, often for very personal reasons. Their money, passion and memories have been trampled upon by the fact, Scope has abandoned people with cp as its main focus. The fact people with cp still useScope’s now out-of-date services is irrelevant since that is only historical rather than by design.
If Scope has a problem still with people with cerebral palsy, because it does not fit into their sanitised view of disability, then they should use the money and assets it had been given to benefit people with cerebral palsy to start up a separate organisation for people with cerebral palsy and their families, run by people with cerebral palsy and their families. This will ensure we once again have a national voice on the issues that affects us.
I am not sure Scope will take this request seriously, or understand the cruelty of ignoring their organisation’s own history in this era of charities being run as businesses by unemotional grey suits. But their abandonment of people with cerebral palsy is partly responsible for the physical and emotional distress people with cerebral palsy and their families face in trying to interact with health and social services that no longer understand their needs.
People with cerebral palsy deserve their homeland just like every other impairment group, and it is now time Scope sorted out the cultural refugee problem it has created by abandoning us.
– If you like what I say, have a look at my website at http://www.simonstevens.com or follow me on twitter, @simonstevens74