Tuesday, 27 October 2015

Walking Practice and knee pads

As most of you will know, I use a wheelchair for pretty much everything outside my home.

This is for a combination of symptoms of EDS and POTS, summarised and simplified as:

1) Wobbly feet, wobbly ankles, wobbly knees, wobbly hips and wobbly spine; all requiring tight-rope-walker degree of muscle control, coordination and precision to maintain upright.

2) Dodgy blood pressure and heart rate in response to standing steadily stealing said muscle control and coordination.

The best way of improving muscles is generally to use them, but my trouble is that doing anything in standing has a very limited timescale, It's the coordination and keeping the right muscles at the right tension throughout a movement that I find so difficult - it's not a strength issue.

I have a theory that if I could find a way to improve one wobbly area involved in walking, then maybe that would make controlling the rest more do-able.

Only I can't practice walking focusing on just one area - because the moment I get any one area wrong, I hit the deck (or wall, or sofa, or table).

My physio gave me an exercise of kneeling on a wobble cushion and mucking about - as in moving arms around so I have to get muscles to compensate actively so I don't fall over. I wanted to build on this.

So the other day I bought....
Image result for rucanor knee pads


dancers kneepads.

Which I will use for dance (of course), but I can also use around the house.

My plan is: to do as much walking with poise as I can manage, then when I coordination drops to 'incompatable with proper walking' I can knee-walk instead - so my hips and trunk get more of a workout  in an upright stance similar to proper walking, but I don't have to concentrate on knee, ankle and foot position.

Hopefully this will improve my trunk stability, which might then, in time, make proper walking a little better. And even if it doesn't, the strength I build will help keep general pain more manageable, and it should also help with my digestion too! (Exercise is known to help transit through the lower intestine.)

Seriously, the knee pads make are incredibly comfortable to kneel on. Weirdly so. I mean nothing has the right to make kneeling this comfortable! But hey, I'm not complaining! They are a bit scritchy-tight, but I'm really hopeful that they might prove to be another tool that helps me get the best out of my body.

They are definitely worth it.

Yesterday I vacuumed the living room floor, courtesy of knee pads.


Normally getting the right muscle tension adaptations for the hoovering movements on top of standard wobbly joints control is virtually impossible: a recipe for disaster. Knee walking with kneepads made it delightfully do-able. And I was much less exhausted than I expected afterwards :)

All Hail the Kneepads!

Wednesday, 21 October 2015

Creating products for people on the Autistic Spectrum

I was at the launch of MIND's guide 'Supporting people living with autistic spectrum disorder and mental health problems' on Friday. It was a really interesting event and I hope their toolkit will help practitioners provide better mental health support to people on the spectrum.

Several of the talks highlighted how important it is to find out the service user's perspective and opinions. i.e. the views of people with autism.

This is true. It's not just important, it is fundamental.

Here's some notes from my experience of creating keyring cards that work for people with autism/on the spectrum:
[Note: I'm not autistic, so I have no right to say which terms are acceptable. So throughout this post I've used is a selection of terms that different autists have told me they identify with.]
Find people with autism to consult. Social media is great for this.

Read things written by people with autism. Blogs, social media, stuff like that. My experience is that people who state their spectrum-osity in their SM profiles are also good people to consult about products - they tend to be confident with their difference and not afraid to tell me when I'm getting it wrong. That way you will hear their perspective directly. Medical professionals and support charities might know lots, but if you want a product to work for an autistic person then professionals and charities should be background research. Perspectives gained directly from people with autism should take precedence.

And once you have a design in progress: keep consulting. All my autism related items have been repeatedly fine-tuned by spectrumites - and as a result they are far better and far more useful than they would otherwise have been.

Have a clear purpose for the product. And make sure that the purpose is one that people with autism think is important. When deciding the purpose it helps to find out the views of a few different people with autism on the issue you hope to address, and keep researching until it is something that makes total sense to you and you can relate to.  'Helping an autistic person' is not good enough. 'Making people understand how important noise cancelling headphones can be for an individual with ASC, so they don't try and make the individual remove them' is fine.

Accept that no product will work for everyone on the spectrum. Everyone is different, both in how their autism affects their lives and in personality. Trying to create a one-size-fits-all will usually mean something so watered down and generalised that it works for no-one. There is no problem creating a product that works for some, provided you don't pretend that it should be used by everyone.

Make sure the design is one you would be proud to use/show. Autism doesn't stop people having good taste. If it's aimed at adults, make sure it is suitable for adults. I do this by using the same principles and basic design that I do for cards I use to explain my conditions.

Don't lose the humour. Avoid the trap of thinking that spectrumites don't get humour. They do. (although of course the exact sense of humour varies between people). If you struggle with this, then spend more time with some autists in situations where they are comfortable and relaxed (preferably both in person and on line).

Only address one issue per card, and keep it clear and simple. The fewer words the better, and a good image means less words are needed. This makes them easy to read, easy to relate to, and gives the user power to say 'here and now, this is the piece of info you need'. Lists and paragraphs are fine, but if the relevant info needed in that moment is half way through paragraph 4, or at bullet point number 8 there is a real chance that the reader will miss it.

A specialist would say this makes it easier for the person with autism - but actually it makes it clearer for EVERYONE to understand.

How appropriate, clear, simple and engaging a communication aid is for the user AND the reader is what determines its effectiveness.

Anything aiming to communicate about autism needs to be presented in a way that gets neuro-typicals to drop their unhelpful attitudes and inflexible approaches to autism, and to embrace it as simply a different normal.