Monday, 22 August 2016

My favourite accessible loo

Accessible toilets are a strange breed.

There might be a standard 'standard' that they should all meet, but in reality disability is often so complex that a generically 'accessible' loo rare, and every loo is different (and that's without considering that many technically accessible loos that are used as storage rooms, rendering them inaccessible.)

For example, some people need space to the right of the loo to transfer from a wheelchair, some to the left.
Some people need adult sized changing mats, others need a toilet, and others need to empty appliances.
Some people need grab rails within easy reach of the loo - while others need free space around the loo so their chair can get close enough.

Trying to fit all this into one bathroom is challenging, but it's doable.

My favourite loo does an amazing job of covering a wide range of needs (although I'm not sure how well it would suit someone with a visual impairment.)

It is at Paddington Railway Station, near platform 13.

It has:

An adjustable adult changing mat with hoist, and shower.

A separate level access shower with seat
A toilet with fold down grab rails, and lots of room both sides for transfers.

 An adjustable height sink that a wheelchair user can easily use.

Seriously, it is SO nice to wash your hands without having to do minor contortions to get your arms up and over the side of the sink but under the taps in a standard sink - while simultaneously trying to get close enough to reach without crushing your legs between the chair and the sink.

It's massive and spacious and clean and marvellous and has everything I need - and many things I might need in the future.

True, the hand soap is strangely distant from the taps - a second one closer to the sink would be great, but it's still the best public bathroom I've ever been in. In the same way that one rarely passes ones favourite coffee shop without popping in, I rarely pass through Paddington without stopping there.

So big thanks to Paddington Station for a fabulously accessible loo.

Sunday, 14 August 2016

Lazy - or necessary recharging?

Humans have a finite amount of energy, and if we push beyond our limits we need to recharge.

In reality it's not easy. Especially when you have a condition that means you have less energy to start with than average (for example many hidden disabilities and invisible illnesses), or that your energy is used up more quickly (such as through pain, sensory overload or stress).

It has taken me years to get a decent grip on recharging - and I still often don't get it right.

Part of my brain knows that I have limited energy, that some things use it up very quickly and that certain symptoms mean I need to recharge (like increased difficulty concentrating, loss of word-finding abilities or speech, reduced coordination, feeling overwhelmed by situations I am normally fine with.)

But another part of my brain looks at what I have done and says "You really shouldn't be this tired! You are probably imagining it" or "Stop being lazy and get up and do something constructive" and feels guilty for not doing what it feels I should.

If I listen to that I end up pushing on until I crash (i.e. reach the point I can barely open my eyes and even eating is a struggle). And by continuously trying to push further I never quite recover - feeding a downward spiral in my health. It takes a lot of courage to go against the belief that "I am a failure if I recharge when I need to".

I've been learning recognise my 'early warning' fatigue symptoms and getting better at consciously taking time out to recharge - and as I recharge earlier, it's doesn't take me as long and gives me more time and energy for living. It's really rewarding - not least because when I get it right I actually spend a lot less time recharging.

But it's still tough.

And sometimes usually supportive people make it tougher. People I care about and who I know care about me can try to encourage me with things like "You just need to push through the tiredness" and "Don't be lazy." - which means I try to push through when I should recharge, with the effect that I become less and less able to do things. It's counter productive even though it is meant well.

There may be situations those comments are appropriate (I am very capable of being lazy :D) but when I'm in a downward spiral of exhaustion, then they are damaging.

It is much more encouraging if someone asks me whether I can arrange extra recharge time afterwards in case I need it, or whether I  have the next days' meals all ready so I don't have to cook, or finding somewhere quite so I can have a rest partway through an event or outing - or at least recognises that these techniques might be needed.

Over time I have been able to surprise myself with how quickly I can recharge when I take breaks at the right time - enabling me to try more, and actually helping me build stamina and strength - which feels counter intuitive, how can taking breaks improve stamina? -but it honestly did for me!.

Recharging isn't about hiding from life - it is about temporarily stepping back in order to get the most out of living in the long term.

My need to recharge is real, and when I recharge it isn't a failure, but a beautiful success from which I can emerge in a better state than before.

(Random side note: For me a recharging day is rarely staying in bed all day. I recharge better by doing small gentle movements between rest breaks, and getting up to do simple, short tasks before resting again. If I don't keep moving within my recharging I tend to get worse instead of recharging. I guess the human body was designed for movement. Another key part of my recharging is being REALLY strict with things that take concentration - including avoiding social media and interesting movies! )

Wednesday, 10 August 2016

Why shouldn't I pet the assistance dog?

I didn't see why petting an assistance dog is such a bad thing. I can understand why you shouldn't pet them when they are guiding their owner (that could cause a collision!), but when they are just sitting or not doing anything, surely it can't hurt.

Can it?

I can understand why some people feel the need to make a fuss over assistance dogs.

However, through recent conversations with assistance dog users I have discovered that the dogs are often still working even when they are apparently resting.

When they are walking they may be guiding - but even when stationary they may be assisting with balance.

They may need to be ready alert to medical conditions (such as high or low blood sugar, or the early signs of a seizure) or to sounds such as a telephone or a baby crying.

They may need to be ready to pick up things that have been dropped or fetch items, or any one of a huge number of other things a dog can be trained to do.

And even if they currently have no specific task to do, disrupting their concentration can mean it takes a long time for them to refocus- making them unable to work when they are needed.

So I, for one, will be making sure I don't put an assistance dog user at risk by interacting with their dog. I can always ask permission - but if it is not given I will leave the dog alone.

(Keyring card available from )

Thursday, 4 August 2016

Olympics, Paralympics, Superhumans, and me.

I loved the 2012 Olympics and Paralympics and can't wait for Rio.

The athletes' skill, dedication, courage, determination, and single minded years of hard work all resulting in superhuman feats of strength, speed and/or skill. And I look forward to trying to capture some of those moments in 'stickman'.

But while I have been looking forward to The Games, I have also heard people with disabilities react very negatively to the 'Superhumans' advert for the Paralympics.

Yesterday I saw the advert for the first time.

For 95% of the ad, I loved it. One minute these people with disabilities were doing normal things (working at a computer, brushing their teeth - And by the way, keeping your teeth clean is a life-skill. There is nothing superhuman about it whatsoever, whether you use the standard technique, adapted technique, or have someone help you.). The next minute they were doing something extraordinary. Racing, climbing, competing at the limit of human capability, having dedicated huge amounts of time and effort into building that super-human skill.

Like superman. One minute he's Clark Kent doing the mundane, everyday stuff. The next he's doing something extraordinary in his superman suit and saving the world (his lycra suit makes the parallel with sport even closer :D)

I loved that concept.

I loved it because it took difference and made it normal.

I loved it because when my normal is accepted as my normal, then my achievements can genuinely be appreciated.

I loved it because it gave people with disabilities the chance to be both ordinary - and extraordinary.

Then we approached the end of the ad...

And I realised that the concept I 'saw' in the first part of the ad wasn't the message of the advert as a whole.

Lots of the people shown were only doing normal stuff - the girl on the trampoline, the kid having a drink, the boy kicking a football. All every-day stuff. Many of the people shown had cool adaptations and ingenious ways around problems, but that's not superhuman. Why? Because the capacity to adapt to the situations we are in is totally human. A child with disabilities playing in a way that works for them should never be seen as superhuman - it should be seen the same as a non-disabled child playing in a way that works for them: normal, healthy and human.

And being human isn't superhuman.

Elite athletes (whether disabled or not) are another matter entirely. They do normal stuff - but in their chosen field they are truly exceptional. Being the fastest person on the planet without an engine in pretty much any context is definitely something I'd class as superhuman!

Perhaps this message of 'all people with disabilities are superhuman' was unintentional. Without that aspect, I would have loved the ad, found it positive and empowering. But as it is it leaves a unpleasant taste.

I get that depicting someone with a disability as superhuman for getting on with their life is better than seeing disability as sub-human.

And yes, the 'yes I can' attitude of 'I want to do this, I just need to find the way that works for me' is praiseworthy. But not superhuman.

By seeing the 'different normal' and all the ingenious solutions that allow us people with disabilities to function in a world designed for non-disabled people as 'superhuman', hard won achievements are reduced to the same level as routine tasks that come easily.

And with the 'superhuman' label comes the problem that I am not allowed to just be human.

And that makes me sad.