How far?

Google can be my friend. Sometimes it is not. Like last week. I was researching “back to school” plans…looking for some new ideas for the girl to use in her mainstream setting. What I found brought red, hot tears. “…function of cerebral palsied people…”, ” Associated dysfunctions”, “…greatest physical handicaps also have the poorest mental functioning.” Gobsmacked! The language…the labels…the assumptions.

Mostly I see my kid just as my kid. The reality of her severe disability hits hard occasionally but she is still a child/girl/daughter/sister/friend first. Like looking at the proverbial car crash I had to keep reading. It didn’t improve. So who wrote this? UNESCO that’s who.

The first paragraph touted a glowing report of how far we have come since the 1950s. I had been thinking it was written about then but no it was 1989 (just?) twenty six years ago. If I am horrified by the attitude of 1989 imagine how 1989 felt about 1951! My realisation….maybe this is how it needs to be. We gradually shrug off old ideas and learn more about cerebral palsy and, more importantly how to support the people who have it.

I have always thought that if Missy must have CP, at least she has it now, in this time and in this country. I feel for parents of the ’50s and earlier who would have had to fight a whole tide of opinion and bureaucracy simply to have their child at home. The knowledge that I would have struggled to live in this time was apparent but my issues with the attitudes of the ’80s surprised me. So it is my turn to say look how far we have come.

Since I was at school {surely it hasn’t been that long} Inclusion has replaced the idea of integration. It is now expected that children with CP will live with their family {if possible}. There have been numerous advances in medical and physical care…botox for one. Velcro* alone has been a blessing. Just imagine the multitude of fiddly straps that used to be on orthotics, splints and other equipment.

I frequently find myself educating folk about cerebral palsy. Whether it be a quick explanation to a kid in a supermarket or discussing the intricacies of non-verbal communication with new support workers, teaching and advocacy can be tiring. Full acceptance and celebration of difference sometimes seems a long march away. But not so much today. In this moment, with this peek into history – as upsetting as it was – I feel grateful. For we have come a long way. And that is good.

*Note: Velcro was actually invented in the 1940s but I have noticed a big increase in its use just in the time I have been involved in the disability sector. Therapists can use that stuff for anything!

Children with Severe Cerebral Palsy, An Educational Guide

http://unesdoc.unesco.org/images/0008/000850/085085eo.pdf

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2 thoughts on “How far?

  1. Although we have made progress, there is still work to be done. I am grateful to live in an era where access is seen as a civil right, in a country with legislation to protect my rights. I know my life would be very different if I were not so fortunate.

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