Don’t forget the Spastics

I am very aware that the majority of readers will find the term ‘spastic’ derogatory but the reason I used it was it attract you to this article about cerebral palsy. The term was once very acceptable and before 1994, Scope was called the Spastics Society. My full medical condition is Spastic Quadriplegia Athetoid, which basically means my coordination in all my limbs is messed up, so I am technically a spastic, and I am quite proud of that.

I would like to suggest that within the complex issue of disability, each impairment or impairment group has had its day, when it is fashionable and appears on top of the pile as the newbie in town before being embedded into the social mix of disability. A few years ago it was Autism and Aspergers Syndrome, and before that it was Dyslexia. Right now, it is the whole issue of sickness, which I have discussed many times. Cerebral Palsy, one of the big traditional impairments, had its day in the 1950s or 1960s, certainly before my time and it is an impairment that just now seen in terms of being a physical and/or learning impairment.

The effects of cerebral palsy, which is brain damage at or around birth, can be enormously diverse and the services we have are so as diverse as any impairment can be as cp can affect any or every aspect of life. This has somewhat turned it into an impairment that can be covered by services in the name of other impairments but this does not mean cp does not have its own specific issues. There are also some myths and issues that need clarifying to ensure society can be more aware of ‘our needs’.

The biggest myth is that cerebral palsy is non-progressive and does not fluctuate and while indeed the brain damage we have does not change, the effects on our bodies and mind does. When people with cerebral palsy were all kept at home or in institutions doing nothing, of course our situation did not change. But as we entered mainstream society, working hard to be contributing members of society with all the stresses and strains that went along with that, it became clear that there is a whole range of secondary conditions that goes with cp like reflux, ingrowing toenails and possibly emotional difficulties that are just starting to be realised. Since these secondary conditions will appear and be accordingly treated, it does mean that our functional ability will indeed fluctuate, and so it is right to have periodic assessments from various services.

Adding to this is that because of improved birthing techniques and medical advances, people with more severe cerebral palsy are surviving after birth and there are less babies born with mild cerebral palsy, which means the demographics and associated needs of people with cerebral palsy are continually changing, and so it is important there are organisations who can give good advice and represent our specific needs within health and social policy.

It is therefore incredible that cerebral palsy is the only impairment in the UK, major or minor in terms of numbers, that does not have its own organisation, which is proudly and strongly fighting our cause. I know many readers will say no, we have Scope, but that is simply not the case. Since it changed its name in 1994, Scope has steadily and slowly abandoned people with cerebral palsy, maybe out of embarrassment in the name of the social model, for the more fashionable and profitable image of being a pan-disability/impairment organisation. In 2007/8, Scope had a small “About cerebral palsy” project to remind itself of its historical expertise and that they may need to do some work on the impairment, but the pending recession meant the project was cancelled and that was the end of Scope’s relationship with cerebral palsy. While many of its service users do indeed have cp, it is more historical rather by any current design.

I am not suggesting it is time for cerebral palsy was back on top of the pile again as we must offer every condition its own political and social space. Being disabled is not the same as having an impairment in terms of identity and experience, and it is important I can have a voice as both a disabled person and someone with cp. While social media is indeed growing the voice of people with cerebral palsy, it is still in its infancy with small groups that has still not reached a stage able to explore the fascinating complexities of cerebral palsy and bring that debate into the public arena to influence social policy. But it will come and in the meantime I ask the many disability organisations and political factions not to forget us, even if we have been very old hat for such a long time.

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