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The personal site of Jamie Knight, an autistic web developer, speaker and mountain biker who is never seen far from his plush sidekick Lion. View the Archive

Topics: Autism Development

Reality of care.

Its been a rough month here. But ouf it has come something of a revalation for me.

Care and support for people with disabilities, needs to be independent from freinds and family.

Heres why.

1: Support the disabled person, support everyone.

I’ve been in receipt of support from my friends and my partner for years. The support was really good. My partner covered the day to day stuff, and my other friends helped with the more specialist things (for example, a friend of mine who is a legal type, helps me manage my post!).

The day to day support recently stopped, it was strained anyway. To support me, my partner sacraficed his social life. It was never going to work long term, with no social life and huge practical demands form me (and my poor health) the support relationship collapsed. Its a testiment to his love for me and values that he lasted so long. Were still very much partners but he is now free to move on.

The relationship collapsed because it mixed care and friendship in a way which was too much. It started to become guilt driven and forced.

I believe, that the care has to come from a third part. Because, if a third party supports someone with a disability is also frees thier friends and family to have decent lives of thier own. Right now, decent third party support would enable at least 5 people to have more freedom and less guilt in thier lives.

My friend will still be helping, the thid party support should (and hopefully will) take the baseline load. The day to day stuff.

2: With support, a disabled person can be themselves.

Soemhing i have learnt this last month is that “independence” is not about laundry and cooking.

Independence is about giving all people (disabled or not) autonomy of thier lives. A footing to succseed, While practical independence is important, independence via third parties is not a lesser thing.

If i live in supported living, but that enables me to earn enough to pay for my own support and in turn have high quality relationships with my friends then that is also independence. It has value.

What more, if this setup makes me happiers. Then its fine.

Independent and autonomy is choice over what works. The last time i lived in supported living it worked for me.

3: Need is not everything.

I think part of the issue with social care in the UK is is so underfunded or strained the idea of preference is ignored. Unless you absolutely “need” the services won’t help. Its crisis care or nothing.

Quality of life, preferences, hell being happy is just not important.

From my perspecitve, services go for what is cheapest. Not what is best. So for me, while my friend could help, then will force them too. When it breaks down, they will then deal with it via crisis management. the services have no interest in establishing something sustainable.

4: I have a right to be happy.

i have a right to be happy. If having a job will give me an income suitable to pay for support that keeps me happy its fine.

Its not lazyness, thats important. Its about value. If my value to the world is in making cool apps, building great things at the BBC and inventing stuff, then it would be a waste for me to instead spend half my resouces simply making sure i eat and have clothing to wear.

I would rather be a mostly verbal working person, than a non verbal person who just about manages to maintain “independence”. Using medication to control the panic attacks. I think thats the choice infront of me.

This is the journey i am going on. I have an income from my job, and i choose to spend it on enough support that i can cope. The bases may be autism, but i feel as though i have a choice.

For me that choice is to get support from third parties and to seek a different type of independence. Its really challenged my perception of my own worth and value. But i think its an important topic. So let me know what you think in the comments.

Published: 25 February 2015 | Categories: , Permalink


  1. Kaymarie · Mar 11, 07:37 pm ·

    This journey isn’t that different than the journey we all make in learning to put ourselves first. It isn’t easy, but it is worth the struggle. Most people I know struggle identifying what it is that makes them happy and then doing it without embarrasment or guilty.

    And, you are right it is a very important topic. I am glad that you have decided to craft your own version of independence.

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