A lack of CP information

In 2009 when I first found out I had Cerebral Palsy, I had no idea about Cerebral Palsy. I was in the doctor’s surgery last night when I noticed there were no details or information on Cerebral Palsy in the waiting room at all. The surgery had information leaflets and some available local groups for the following:

Diabetes; Tinnitus; Alzheimers; Deafness; Drug abuse; Parkinsons; Osteoporosis; Fibromyalgia and Cervical cancer. Many babies are still being born with Cerebral Palsy and since I was born, the rates haven’t declined and yet there are no pamphlets in my doctor’s surgery to read up on the condition.

There is, however, a Cerebral Palsy charity in England whose aim is to bring  all disabilities into the public domain. The Society has since changed its name to Scope and lends and offers support to those with Cerebral Palsy and disabled people in general. They also provide sheltered workshops and Day Centres where disabled people can meet up.

Scope’s ethos is about equality. Rightly so they want people with Cerebral Palsy and other disabilities to have the same rights as non-disabled people, but unfortunately this is still not being achieved in society today. From my own experiences, having faced prejudice, society still does not accept people who struggle with disability.

Disability doesn’t always come in the physical form, it’s never just about the physical implications. There is a gap in society for information sources on disabilities like Cerebral Palsy. Some of the conditions I have referred to above are probably not seen or classed as a disability.

Perhaps that’s why there is more information and local information support groups available for those conditions. I am just wondering how many of us deal with what we deal with, without local support groups to help us?

There was no support group for families whose child or sibling was growing up with Cerebral Palsy in my area.

26 Nov, 2010

8 thoughts on “A lack of CP information

  1. I am surprised there are no leaflets or pamphlets in your doctors office on CP. Maybe in a pediatrician’s office it would be different? I see what you’re saying that CP is possibly looked upon as a disability and the others are not, that isn’t fair.

    You keep up the good fight with your CP and we will keep reading your blogs. You are inspirational in all that you do with all your topics and knowledge.

  2. I’m sorry there isn’t the information out there like there should be.

    Your depth of knowledge and this website is great and you’re doing a great service educating people. I’m here to support you and this site and to learn from you. You’re a gem!

  3. I agree it is not well publicised. Organisations like mine who provide treatment, support and advice to people with, or families of people with cerebral palsy find it difficult to get airtime.

    I am a parent of a little boy with CP and I too was faced with lack of information. In response I studied and eventually opened my own treatment centre and wrote a book about CP.

    1. You are absolutely right, there is very little information out there for those who deal with CP. Thanks for posting today.

  4. I know how you feel, trust me. But society is getting better, but not that much better. Just whatever you want to know all you have to do is ask me and I will try to find whatever information on whatever you want.

    Some doctors don’t specialise in CP, so they don’t have the information in their office. It’s good to be back on this site finally with you. Thank you for all your e-mails too. Colleen.

    1. I totally agree with you Colleen. In England we only have specialists who deal with children with CP. Thanks for your support, I am sure you and I are in the same position. We have little to work on, which is more than frustrating!

      Nice to have you back Colleen, always.

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