LAURA’S STORY
I would like to tell you about my 14 year-old daughter Laura’s loneliness and isolation. For me this is more painful that any of the symptoms that accompany her physical disabilities.
Before my daughter reached teenage years, and before her disability progressed, she had many friends in the neighbourhood. There was always someone calling. We have tried so hard to encourage and cultivate her friendships, always welcoming her friends to our home and taking them everywhere with us. .But gradually, with the onset of adolescence, and her need to use a wheelchair - the visits diminished. We have had many friends over for sleepovers, but the visits have never been reciprocated. Perhaps we have tried too hard, and sadly I feel that both Laura and ourselves have in strange way been taken advantage of.
At mainstream school my daughter is friendly with her peer group. But this stops at the school gate. There are no callers, texts, phone or email messages for her. She spends all her weekends and evenings with us her parents. Gradually, my daughter has been frozen out, friends who once called now walk past the front door. It is as if she no longer exists.
The point is that, Laura’s peer group just don’t consider her to one of them and they just assume that it is natural not to ask her to join them. For them, Laura is different and is an outsider. Perhaps they just don’t think of her at all – she is just not on their radar. And, she knows it. Her confidence is shaken, she will no longer make any more attempts at ringing people. She has heard too many times that her friends are all out at the cinema or the shopping mall. They are out doing things that she would love to be doing. Phone messages are no longer returned and promises to get in touch never materialise. Instead Laura retreats to the television, to the world of teenage soaps, and that is her experience of growing up.
She is being denied all those life experiences that her peers take for granted.. She is spending all her time in the company of adults and there is a risk that she will become unable to relate to her peers or other teenagers because she has been prevented from developing similar interests and social skills to those of her own age.
When I mentioned this to some of the professionals involved with Laura, they seemed surprised that this exclusion is occurring. Surely, in the position they are in, these professionals are bound to be aware of the fact that many disabled teenagers are socially excluded. How on earth can these professionals do their job properly without knowing about this? Or, do they not listen to young people or parents - have they not given them the opportunity to speak about what hurts them most. One professional who I spoke to was repelled by my story. I had offended her sensibilities. Very patronisingly, she exclaimed to me that my daughter was always smiling and was very ‘brave’ and ‘plucky’ I almost felt apologetic for having mentioned my daughter’s isolation.
I have found some professionals to be very embarrassed about this problem, they don’t know how to handle it, they obviously would prefer that I didn’t mention it, it’s just too difficult to for them to handle.. They act as if I have ‘put them on the spot’. Are they in their ignorance just living in ivory towers or is their ignorance just a form of protection against something that is so painful to consider?
The public will give willingly to charities that collect for disabled children. Yet, they won’t encourage their children to be friends with them. That is asking too much. Some parents just let their children stare and point at my daughter…..
There is still a great fear of disability and difference. Let’s stop being afraid of these things. Let’s look at them and try to understand where these fears come from...
Inclusion should be about this, and it should be about educating future generations to view disability in a positive light and not as a tragedy. If you insist on pitying someone, you will never treat them with equality, but you will keep them at arms length..
We need real attitude change and disability equality training should be high up on the agenda for anyone who works or is educated with young disabled people. You can make all the physical adjustments to a building but if you don’t seriously look at attitudes and mindsets you will make very little difference to young disabled people’s lives. You might physically ‘bring someone in’ but there is much more to it than that.
I have a new social worker who has taken the time to listen to me. She has worked to get approval for direct payment provision whereby a personal assistant will be able to take my daughter out for 3 hours at the weekend to the mall or to the cinema. It sounds promising, but I can’t help thinking that it’s like paying someone to be her friend. And I think that’s awfully sad.
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