Talking About Disability With Parents

I have found one of the most sensitive situations I find myself is on a professional and personal level is talking to parents who have recently had their child diagnosed as having some kind of impairment, either before they are born, or afterwards. While I am extremely positive about my situation, despite the difficulties I have from having cerebral palsy, I know this is not what these parents want or need to hear at this time.

I have realised that it is very important that parents are supported to have the time to properly grieve for the ‘perfect’ child they were hoping for, because finding out your child has impairments is unexpected news however accepted and included disabled people may become. If parents are not able to complete the grieving process, they will be unable to move on and give the love and support to the child they have. Instead they may become obsessed with non-existent cures and allow themselves to be duped by the promises of an endless supply of modern day witch doctors.

This does not mean I am against operations, treatments or therapies, but I feel it is important that the focus should be on maintaining and improving the quality of life of disabled children and adults physically, emotionally, and as importantly socially. There is little point for a child to be able to walk straight, something other people do not rate as important, if it was at the cost of their education, and therefore their ability to make a meaningful contribution to society.

Once parents have been supported in dealing with their grief, then it is important they are supported to see the many and wonderful opportunities that is currently available for their disabled child. This is the point where they are ready to meet people like myself and see what is possible despite being disabled, or maybe because of being disabled. I have, along with many disabled people of my generation, open many doors to opportunities that their child will benefit from, hopefully without the level of discrimination and battles we had to endure.

Disabled children and young disabled people, as well as their parents, need role models, people with similar impairments to themselves, who they can look up to and respect as people they wish to be like. I am not sure I had any true role models in my childhood and maybe this is why many years ago I decided I had a responsibility to use the opportunities I had to be a role model for the next generation.

I believe social media has also made it easier for people to connect with people like themselves as well as people they respect and even idolise, making all of us as touchable as we choose to be. This enables parents to connect with disabled people and be able to share experiences and understanding, helping to breakdown the fears and concerns they may have through informal discussion and indeed friendship.

It is important that parents have the opportunity to talk about their fears, concerns, hopes and dreams for their disabled child with professionals and disabled people. No parent should feel isolated, one of the common problems with the way health and other services currently support them, or maybe fail to support them. I would always had loved the opportunity to go back in time and give my parents the support they never had since it may have saved our relationship.

And that is a sad reminder of what happens when parents are not supported, a disabled child may grow up with hopes and dreams, because they do not understand their limitations in the way their parents understand them, but the stresses that parents have experienced from unhelpful and unsupportive state services, has caused them to see their disabled child in a very different way to the child will see themselves. This difference of perception is likely to cause a rift in the relationship between child and parents, especially as they grow into adults, making a meaningful relationship sadly unworkable. This is the reason I have felt it necessary to not have any contact with my family, to avoid a relationship made toxic by circumstances and the differences in how I see myself, as a strong man with drive and determination, and how they see me, as that little handicapped boy who dribbles on the carpet.

This is why I have become passionate in supporting this generation of parents of disabled children to have the practical and emotional support to be able to appropriately celebrate the opportunities their children have to succeed, and I sincerely hope some of the next generation of disabled people put me to shame in how they have taken the baton and push the liberation of disabled people to the next level.

from Simon Stevens


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