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: Autism & Me , Opinion Permalink

Days 1 & 2 in San Fransisco: Sensory Stuff

I flew too San Fransisco three days ago, so today is the start of my second full day in the USA. The flight was quite difficult, but we landed in once piece. So far so good.

Over the last few days, I have been really sensitive to sensory stuff. I’m having lots of fun (exploring the city a little, visiting a friend) buts it’s been rather overwhelming at times.

So, in no specific order, here are some of my observations.

Intense cleaners

So far in the USA I can almost constantly smell cleaning products. The rental car smells so strong I felt sick until we had run the air conditioning a bit. We guessed it’s because the car had been cleaned and then sat for a while. Its hard to know for sure, but the smell was very noticeable. Luckily, over time the smell is dropping.

Another strong smelling place has been the corridors leading to the apartment we are staying in. It smells similar to how hospitals in the UK smell. The lift smells less strong, but the smell is different. Whereas the corridors smell of “fake freshness” the lift smells a little minty.

Out and about I have also noticed smell more. Shops (like wall-greens etc) all smell of the same “fake freshness” smell and the place where we ate dinner yesterday smelled of cooking. I don’t mind the cooking smell, but even somehow that smell seemed a bit forced or fake.

Finally, there are a few smells I like. I REALLY like the clever electric buses as when they pass you can smell the electric motors. Reminds me of scalextrix cars.

Very loud.

San Francisco also seems to be very loud. The trams are really loud, but the general background level seems high. In shops the music seems much higher and in the street cars seem louder. We did wonder if its because the cars are bigger.

Even sat in the apartment, there is the noise of traffic outside. A huge 6 lane “expressway” is a few hundred meters away and the sound from it is very noticeable. For this trip, my ear defenders have been essential

Car headlights.

Perhaps its because i’m in san Francisco, but the cars all seems to have extremely bright headlights. We wondered if its because the cars a more modern or simply more cars have higher powered headlights. Looking out of the windscreen while driving at night is very difficult.

Adverts everywhere.

Driving around San Fransisco there are adverts everywhere, they can be extremely bright or visually “loud”. I’m amazed residents do not crash. Its quite remarkable. We went into a Safeway to do a shop, and the packaging seemed to use my stronger colours. In one aisle of the supermarket a wall of “stuff” filled my entire vision and felt endless. I have been taking my glasses off lots to try and reduce the overload. It makes British supermarkets seem minimal and visually restrained.

Roads

Finally, in San Fransisco there are loads of really amazing bridges and flyovers. They are really cool. What I find interesting is that the flyovers are rarely square. They swoop, and curve. Going up them in the car at 50mph feels like a roller-coaster.

So, a few days in these are my first impressions. Hopefully, over the next few days I will get use to the sights, smells and sounds.

Published: 23 February 2015 | Categories: Autism & Me Permalink

As I jet off to CSUN...

It’s 4:49am and I can’t sleep. So here’s a short post about my life right now. Consider it almost a snapshot.

This post is indulgently for me, but hey a problem shared is apparently a problem halved so if a few hundred people read it i should be okay… Right?

H3. The next two weeks.

In a few hours time I take my first jet flight. I’m flying to the United States with my shiny new passport in hand. Leaving the UK for the first time.

I’m not traveling alone. My best friend is coming along as support. A slightly surreal combination of factors means that he can support me with this trip.

The reason for all the travel is that I am attending the CSUN conference. A massive disabilities conference held in Sand Diego in 7 days time. I’m on stage for 3 talks covering the gamete from autism to accessibility in the work place.

CSUN is so exciting. It’s a huge challenge but also a huge opportunity. My manager Gareth has done a wonderful job to enable us to get this far. This is really pushing my boundaries in an extraordinary and wonderful way.

I really can’t wait. I’m so excited, but also so curious. I can’t wait to experience how it feels to be in another culture and I can’t think of a better group of people to go have that experience with.

H3. Beyond the next two weeks.

If you follow me on Twitter you will be aware that this is all happening against a backdrop of huge disruption in my life.

A month ago, I lost most of my day to day support when my partner relocated back to Somerset. While hard, I have no doubt that was the right decision. For him and for me.

My response (to attempt going it alone) was not the right response and has failed catastrophically.

The situation, right now, is that when I get back from the states I have no ‘home’ to return too.

I own a building but I don’t have the skills or security to live there. I’m sure I will detail why in the future but effectively I’m homeless once I return.

What we have is a plan. In a nutshell, the plan is to organise a return to supported living in the short term, then working from there, manage a smoother transition back into independence.

I hope, no, I NEED for this to happen by the time I get back. But it’s not in my hands. I’m waiting for the local social services team to figure what’s possible.

H3. Day to day.

I am anxious about the future. I am still physically unwell (suspected celiacs) but I am positive.

2015 has been a challenge. But the next two weeks will dictate the rest of the year.

I need to seize the day. Set the tone. Make the most of these few weeks of awesome and use that to spur me on. Make shit happen. Make it good.

I am supported by the most amazing people. I have trust that ultimately, things will work out.

So here we go!

Published: 21 February 2015 | Categories: Autism & Me , Opinion Permalink