Saturday, May 12, 2012

Change happens

Life is gradually changing for us.  We're no longer carers and it's just beginning to dawn on us.  We miss our son enormously and there are reminders everywhere - and I don't mind them at all.  Bereavement has been difficult - surprise, surprise.  But it's put into perspective how I view all the other carers and disabled people I know.

I always did have respect for them, but as 'one of the gang' that respect was a little tempered by inevitable comparisons between us and them.  I now have some idea of the gulf between carers and those without a caring responsibility.  It isn't just the sheer hard work and time consumption, it's also the continuing mental stress and closed focus you're forced to live with.  Not having to do all the care, and not having to keep one ear open for the problem phone call, is very odd when you've lived with it for almost 30 years.

We've had a sort of (unwelcome) release.  People with disabilities have no prospect of that and still have to get on with living.  Their carers have the ongoing uncertainty and prospect of a demanding role with probably their own deteriorating health and capacity.  The respect both are due is massive.  They rarely get it.

  • I'm afraid I don't find the sentimentalism of 'aren't they wonderful' very helpful.  
  • I find the TV makeovers installing disabled bathrooms demeaning - when there is government funding but it's cash limited so that only a tiny proportion of those who need it, get it.  
  • I object to the media insisting that disabled people and their carers have to be either victims or heroes.  They are real, ordinary people coping with extraordinary circumstances.  We can do something about the circumstances - and just praising them isn't what's needed.  What's needed is real services, real access.
  • Accepting charity (as we've had to do in the past) is not nice - we are grateful, but we shouldn't have to be.

Respect the disabled.  Respect the carer.  But do it practically - make sure your taxes get used well.

In honesty, I'm not a carer any more.  But I do have the responsibility to do my best by them.  I will continue to  fight for their rights and against the systems idiocies.  Whether I'll continue in anonymity as Ned Ludd (as I no longer need to) is another matter.  And it doesn't matter.  There will be a few weeks intermission while I do something involved in 'getting a life'.  After that I'll decide whether to carry on as Ned or come out of the closet and concentrate my efforts in public.


  1. Thanks for saying it - you may not be a carer now but you still have the perspective of someone who has done it, and continuing on is commendable.

    But do go out and do that "getting a life" thing of which you speak (I've heard about it vaguely!) and do so with minimal guilt if you can. You've earned your stripes.

  2. Thank you. I won't leave things behind - wouldn't be respectful to my son. A confirmation from a real carer is more valued than any media pity.