As everyone has probably seen, there's a big story at the moment about a mother who, as a result of a lack of respite help from her local authority, is considering putting her severely disabled child into care. More details can be found here: PM criticised on Mumsnet by mother of disabled child.
I wasn't going to comment on this story because I worried that it would seem that I'm only responding out of self-interest. And on a more emotional level, it's far too close to the bone. It's extremely difficult to talk about, and think about, rationally. One of the important lessons we've learned over this past year or so is that you get through all of this day by day. To now sit and think about Maggie's future being affected by government cuts would make this process much more difficult.
What I will say, however, is that I think it's utterly fucking shameful that we, as a society, can't look after disabled children, and their families, properly. Even if I wasn't personally affected, I would think that - as I'm sure any reasonable person would.
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Hi Paul
ReplyDeleteI can't begin to imagine how hard it must be to think about this story or contemplate the future but please do not mistakenly believe that you are not in a position to comment! You of all people are in THE position to comment. You are living it.
No-one has the right to put you under any extra burden but if you can find and use your voice in the midst of all that is happening (and not happening)it is your right to use it and our duty to listen and respond. I still find it difficult to articulate my views and I am not caring for a totally dependent infant with complex needs. When I was the sole caring adult for disabled children there was neither a forum nor a focus to speak to and I was totally ground down by social services 'experience'! Be encouraged. If you want to speak out and can bring yourself to, yours is the right.
Dear John D. I have deleted your comment on the grounds that you appear to have mistaken this blog for the letters page of the Daily Mail.
ReplyDeleteI am a bit uncertain whether this is a kind of "family and friends" blog, or one that invites public comments. I kind of wandered here, and I am taken with your situation - as it was mine once. Your sleeping child is beautiful - as mine was at that age. There were problems with her birth, and she was diagnosed with CP at eight months. She is now 32, and I have been down that long road you fear to contemplate. All our children are different, my experiences and feelings will not be yours, the outcomes for me will not tell you anything about how your child will fare, but we will share a lot of the same fears and frustrations. I thnk I can say that you have already learnt the lessons that kept me sane = take on day at a time, and don't expect clear answers from doctors!
ReplyDeleteI read John D's contribution last night. The chutzpah of posting it on here was pretty amazing. Maybe I am just another internet loon, but you have my best wishes.
Hello Liz. Thank you for your comment and well wishes - they are greatly appreciated. I welcome all comments but, of course, reserve the right to delete any that I think have no place here. As John D's carefully crafted rant didn't.
ReplyDeleteI only tend to comment myself when there's an idiot to deal with (and I don't mean this comment, obviously!) because otherwise I'd be here all day getting into conversations.
Thanks again.
Someone once said “all politics is local” – sweeping generalisation aside, they would have also been right to say “all politics is personal”.
ReplyDeleteYou, Paul and Shannon, are a case in point: knowing you (through twitter and in person) helps me understand a little bit more about how people in your position suffer from society's lack of support.
Yes, any reasonable person should understand – but many of us only do in an abstract sense of moral rights and wrongs – because we don't have much, if any personal experience of surviving despite that lack of support.
I think your reluctance to contemplate what these cuts might mean to your family is understandable – each day is probably tough enough. However (fully-justified self interest aside) there are two compelling reasons why you of all people should raise this issue, anyway you know how.
The first and most important is that Maggie’s and Alice’s interests – and those of thousands of other children like them – justify your anger. It is, as you say, shameful that society cannot look after its most vulnerable – if not for you then do it for them.
Second, and almost as importantly, your ability to communicate passionately and coherently on this issue makes you just the right person to raise it with your friends (physical and virtual) who read this blog. They read it not only because they care but also because they want to know what society’s response (our response) means to real people.
You help us understand – by making the heartbreak and struggle of thousands of families more real, more personal. The suffering doesn't make you special (I know you hate the word) but your ability to articulate it makes your contribution special because it enables you to speak for the many families who have no voice. And if that isn’t justification for being political then I don’t know what is.
Best wishes
Huw