"Autumn 2011" by Susie Mallett
I was at a meeting all day yesterday and, although the autumn sun was shining outside, this was interesting enough for me not to be longing to be out there walking along the riverbank or cycling through the woods.
One of the subjects that came up was how to provide the opportunity for conductive living to adults who had lived conductively with their families for most of their lives, as children, and wish to continue to do so.
Over a cup of coffee on this glorious, autumnal Sunday I was directed to this link by Norman Perrin:
It is not only in the conductive world, it is also not only in Germany, that children, who have discovered a satisfactory lifestyle that suits their needs at the moment, on becoming adults have to compromise, have to make do with less than adequate, become less independent and therefore more dependent, and begin again the fight against the authorities once for their right to enjoy life to the full.
How strong can families be?
How long can families go on giving their now adult children the help that they need in this fight?
What will it take to change the world out there, at least enough for parents to be sure that there are others to take up this fight when they themselves can no longer do it?
These families should no longer have to rely on that special social-worker or the chance meeting with a conductor, that perhaps helps to make truggling through life easier for them. How long will it be until anyone who has slightly different needs to the rest of us automatically receives the care and assistance necessary without having to fill in the same endless forms or answer the same questions a hundred times?
When will coming-of-age for a young adult with disabilities mean the same as it does for an eighteen-year old who is not disabled – the opening of doors to a wider world and not the slamming of them in their faces.
In the relatively short time since I became a conductor, medical care has improved so much that the population now includes many more elderly members with disabilities and many more at the other end of the spectrum, those born with disabilities. Children who will one day be disabled adults.
I have seen little change in provision for these members of our society. Yes, the streets have become more accessible, the public transport too, but I do not think there is as much of an increase in their usage as there should be. The infra-structure is still missing, there is still no way to make use of those improvements when the money is not there and the carers are not available to help.
I did not leave the meeting yesterday with the air of despondency that I often have about conductive education's becoming established in the world of learning. I came away with a sadness and questioning why it should be that all members of our society with a disability of any kind have an endless struggle to achieve what it is that they wish for themselves in their lives. Whether it is a wish to live together in a house with friends, to attend a mainstream school with an assistant, to study for a master’s degree, to continue living conductively or to own an electric wheelchair, it is a continuous round of fighting, form-filling and questions and answers.
We find ourselves going down the same paths year after year, with the same officials, with the same questions, always for the next children or adults, nothing changes, no wheels get oiled through experiences.
Caring is not always enough
A friend wrote to me today to thank me for helping her with something. In her mail she wrote:
“I can see that you care not only about CE but about people too, which in our profession is not a disadvantage.”
What would the world for our clients with disability be like if there were not members of all the professions who work with them who are able and willing to care about people and not just do a job?
But these families, children, adults both young and old, need more than professionals who care. They need the backing of the powers-that-be too. Until they get this we shall all go on caring.
Norman Perrin - on facebook
After I had read the newspaper article and written my ramble above I went back for a re-read and went on to read the comments.
There I read about a problem that crops up again and again in my work here in Germany. Children become adults and provision for these young adults can be less than adequate, so many parents decide that they will be the carers of their adult-children. Care allowance is available to them. Then when these parents reach retirement age what happens next? They continue to do the caring but the allowance is no longer available. I read that the same happens in the UK. What a crazy world we live in, but can it really be so uncaring?