Saturday 22 January 2011

Whose care is it anyway?

Like most of the country, the Riven and Celyn Vincent case has taken up a considerable amount of space in my brain this week. Thing is, I seem to be concerned with very different elements of the case to the majority of the population.

The press coverage of the story has weighed quite heavily on my mind. Most news outlets are referring to it as the "Riven Vincent case." Celyn, the disabled person in need of a care package, doesn't usually get a name check until paragraph three; as though she's an unimportant afterthought in the story. In fact I'd bet that the majority of people who've seen/read the story probably don't even remember Celyn's name, only that of her mother. Sure the articles all come with a photo of her so people might remember that she's an absolutely beautiful girl with adorable ginger curly hair, but the photos are captioned "Riven Vincent's daughter" rather than "Celyn Vincent".

There are thousands of disabled people in the UK, both children and adults, with inadequate assistance packages. No-one wants to hear those stories. It's only when a non-disabled mother reaches snapping point that it's national news. It reminds me of how the story of Francecca Hardwick and her mum is usually referred to as the "Fiona Pilkington case". Disablist hate crime has killed many, many people over the years and none of those stories have come to the forefront of public consciousness. So why did that case? My theory is that, for the first time, disablist hate crime was responsible for the death of a non-disabled person.

And so it is with Celyn and her mum. Disabled people up and down the country are forced to sit in a puddle of their own piss for the best part of a day until their carer comes in for 15 minutes at bedtime to help them change; and inadequate social care is not a national scandal. A mother reaches snapping point and people are, rightfully, horrified.

One of my friends said "But at least there's a story involving social care cuts that the public is getting behind. It's something, and a step forward." I, however, wonder if it is a step forward or if the story is actually going to prove advantageous for disabled children and their parents at the expense of the social care of disabled adults.

I'm not for a second suggesting that support for disabled children should go out the window in favour of support for disabled adults. Not only do I think that everyone should have their support needs met, but once upon a time I was a disabled child myself so I understand that in some respects a disabled child's social care needs can be more complex and costly than those of an adult. A really good example is wheelchair provision; as a child I needed new wheelchairs much more frequently than I do now because I was growing.

I think there's a very real risk that with so much attention being directed at children's social care packages at the moment that more cuts will be aimed at adult services to preserve the funding for assistance of children and their parents.

David Cameron said that "he did not believe the case was connected to public service cuts." And as the Vincents have always had 6 hours a week assistance and that hasn't gone down, he was probably telling the truth. But if he wants disabled children and their families to have more help while his buddy Osborne is cutting local authority budgets, where is that money for the extra help going to come from if the money isn't being taken from adult social care to pay for child social care?

We have to remember that in the run up to the election Cameron kept on saying that he wanted life to be simpler for the parents of disabled children. He never, ever, even once, expressed any interest in or concern for disabled people over the age of 16. So I really don't think I'm just being cynical when I expect him to hang disabled adults out to dry.

I really hope Celyn Vincent gets a care package that will allow her to be an equal in her family, rather than just a stressor. I want to see all disabled children get the assistance they need to be a "normal" part of family life. I want to see all disabled parents have the help they need for their child to not be a carer. I want elderly people to not have to sit in their own incontinence for 12 hours. I'd quite like someone to help me with the more painful aspects of housework rather than having to look at my filthy floor wondering how much longer I can get away with not hoovering. I'd also very much like to be proved wrong and for the current focus on children's care to not have the end result of making life harder for over 16s.


  1. Really? If you have a source I'll edit the post and put in the link.

  2. "Riven, 41, who has MS, and Holly’s dad Mark, 44, say he [David Cameron] solemnly told them: “I would never do anything that would hurt disabled children.”

    Stephen Rawlins, Daily Mirror 20/01/2011

  3. I'm similarly worried about the approach to Social Care that treats it as some kind of zero-sum game (for someone to win, another person has to lose), but less so the concentration of the media on the carer rather than disabled person. It is probably a lot easier for currently able people [sorry I don't like using TABs it just seems rude and ill wishing] to empathise with the person doing the caring rather than the person with the disability.

  4. @DeusExMacintosh:

    But aren't you concerned that the press bias will affect the outcome of the "zero-sum game"? That's the point I was trying to make.

  5. Just read that Mirror article. Is that the only source that says Riven has MS? Hesitant to cite that source as fact seeing as they didn't even get Celyn's name right. And it's not even a little typo like "Celin" or something, they call her Holly!

  6. But aren't you concerned that the press bias will affect the outcome of the "zero-sum game"? That's the point I was trying to make.

    Not really. We're s<rewed six ways from Sunday anyhow...

  7. >>It is probably a lot easier for currently able people [] to empathise with the person doing the caring rather than the person with the disability. <<

    But if the news media truly care about the case as something important to society, then shouldn't that very fact be one they are emphasising and asking "how do we fix a society that doesn't consider 20+% of its members to be 'normal' or equal?"

  8. We're not normal though. But that is ok. Difference is ok. It is when people are afraid of it and want to ignore it that it isn't. And that is when they will stop empathising with disabled people and refuse any sort of equality or rights. But it isn't even always to do with fear or nastiness though. We are put in a category apart and I think people are conditioned to think that way very early on.

    I'm quite visibly disabled and yet some of my friends have said to me recently that they forget that I am. They didn't mean it as a so called compliment as in "I don't consider you disabled". They meant in the context of the news talking about "the disabled". When described like that they said they didn't really connect to the story much and had trouble even remembering that I was part of that group of people.

    So there is "them" and there is "the disabled". And then there is me, which is shocking because I'm in both groups.

  9. We are normal, if you define 'normal' as 'the set of all humans', disability is just a sub-set within that, but a lot of people instead seem to treat it as a completely separate set outside of the set of all humans -- which to a degree is what your friends were doing. It's that disconnect in perceiving disabled people as 'normal' or 'human' that I'm talking about fixing. We need people to see disability as just a different kind of normal, which is essentially what has been achieved for being non-white or gay over the past half a century.