I have been privileged to represent the SSP at two hustings in the last week and one on the near horizon next week. All of them have been relating to disability and caring issues. I couldn’t have had a better start to being a co-spokerson as these are issues that affect my own and many of my friends daily lives. The SSP manifesto also speaks for itself. Carers and people with disabilities are not just played lip service too but are offered an alternative. These are concrete promises, not just flanneling around as one panel chairperson described the words of others.
These days the most doubly disadvantaged are being taxed for basic services. Families are being charged for transport to day centres and meals. The cost of renewing a blue badge is now twenty pounds to cover administration charges. Another example of the poor yet again being taxed. On one panel I attended two members of the administration said they had not had many complaints about these. What they don’t realise is that as carers we have to choose our battles very carefully. Often we are exhausted and not up to making a fuss. This does not mean we are not angry just tired. The most vulnerable people are being affected by cuts to frontline services. Some services just seem to be changed without any consultation at all.
In Glasgow personalisation is being used not to empower people as it should but as a tool of making cuts. Many carers and people with disabilities report reduction in care packages and the inability to choose a care provider which might offer higher quality care than a cheaper provider. It’s the McDonaldization of care. Used correctly direct payments could really liberate people and give them more control of their lives. Yesterday I was in a charity shop and a person with disabilities came in with someone they supported. They spent all their time on a mobile phone looking at clothes for themselves. Don’t get me wrong, it’s not all like that I have seen good practice too. As a mum though a day trawling charity shops is not the kind of day I would want my boys as adults too have, though it’s my idea of heaven and that worries me when I think of their future.
A comrade and I were talking about Temple Grandin who is a woman who lives with asperger’s syndrome.. She is a vet from America and talks about her experiences of living with asperger’s syndrome. She believes that people have the right to be different and that it is people with different talents who contribute so much to society. See the ability not just the disability. That’s why I called the blog differentability.
My aim is to help us all be part of a kinder, fairer society where we don’t have to be squeezed into the wrong shape box. Where being different is embraced. A society where we are valued not just on our economic status but what we contribute to society. That’s why most of my friends are fellow carers or have been. We learn so much and most of us try to contribute change for other people’s children too.
A friend has a son who has very complex needs which requires him to have a nurse with him at all times. At other times his parents support him. He really is an extraordinary young man who writes poetry by blinking his eyes to communicate. His poems are beautiful and read by people all over the world. He often can’t be at school because he is too ill but when he is there loves being with his siblings. There are no nurses to support him so he can’t go to school. Not only is this an infringement of his human rights. It is something he loves and gets so much from as do the other children in his class at school. This boy must have the right to school! In the week the condems threatened to withhold child benefit from some children they describe as “persistent truanters” here is a lad who wants to go. Yet again examples of how the most vulnerable members of our society are being hittest hardest People should be valued for who they are not what others think they are. Long life difference and most importantly other people’s acceptance that difference is cool. Up and at them.