Thursday, 23 June 2016

Access All Areas vs "but you don't look sick"

Today I want to explain to you why I use accessible toilets and changing rooms.
Now let me make it clear, nobody who uses a disabled or accessible facility owes you an explanation. They don't have to give you proof.
However, I do think that explaining to people, in this manner, from the safety of my own blog instead of when I just need to pee, helps people understand and perhaps make the world a little more accessible for the people who need it.

For those of you new to my blog or who don't know me in real life, a quick run down of my disability and chronic illness.
I have a diagnosis of Chronic Lyme Disease Syndrome. This is also sometimes called Chronic Lyme Disease, or Post Lyme Disease Syndrome. It's a confusing and ever shifting array of names simply because it is an illness still being studied, that isn't fully understood and the exact parameters aren't clear. More commonly I say I have moderate to severe Chronic Fatigue Syndrome or ME (two names for the same thing) as that is what it presents as and is something people are more familiar with. In a nutshell I experience full body fatigue following little or no exertion, that is disproportionate to the exertion and is not relieved by rest. I also get joint, muscle and nerve pain in various parts of my body, bouts of vertigo and frequent migraines.

That description alone may be enough to explain why I use accessible toilets, changing rooms and other facilities but, I'm going to break it down further.



Accessible facilities are often closer to a main entrance or to the main spaces. This means that I don't have to walk as far to get to them. You may not think that walking an extra 20m to get to the main toilets would be much of an issue but to somebody with CFS/ME (and many other conditions) it actually makes an impact. On a bad day that extra 20m can make a big impact and feel more like running a marathon. On a good day I can probably manage it, but every little bit of energy used up adds up over the course of a day and can result in severe fatigue later on. It's all about careful energy management. Really when it comes down to it do you want to use your energy on going to the loo or, if you can, save that energy to do interesting things?

If the accessible changing room or toilet is managed correctly, there is usually not a queue for it. In busy places or at times when there is a rush to the loo (like an intermission at a play) you'll often find a queue for the main toilets. I've just used up precious energy to get to the toilets, and now I have to use more energy to stand and shuffle forward for 5minutes. Not only does that increase fatigue but it is likely to increase pain levels as well.
The accessible toilet however will usually, at worse, have one person in it and one person waiting. That is much easier for me to cope with physically.

Accessible toilets and changing rooms are often larger and have more coat hooks and surfaces in them. Most of you have probably experienced the frustration of being in a small cubical and having to manoeuvrer to take off a coat, put down a bag or two (without getting it covered in pee), use the toilet and then have to do the whole thing in reverse. It's even more difficult in places like swimming pool changing cubicles where you don't want anything to get wet and have to do a full clothes change. Now image trying to do that while in pain across several locations of your body, with reduced movement in your limbs and trying to conserve energy.
Larger spaces with the opportunity to arrange your belongings conveniently help to reduce or at least not increase pain, and use less energy. Simple thing like being able to put a bag on  waist high shelf mean that I don't have to bend down and hoist it up again. It really makes a significant impact on my symptoms.

Finally, when fighting with increasing fatigue and constant pain, I often find my anxiety rising. I can reach a point of sensory overload because so much of my concentration is on managing my symptoms and trying to keep going when I'm out of the house. The world becomes a confusing place that is difficult to process and interact with. And then I need to find a toilet.
Luckily, disabled toilets as mentioned above are often more conveniently and obviously located. They are often clearly signposted and I don't have to navigate a network of corridors and doorways. Just one door and I'm in. That takes the pressure off and stops symptoms getting worse and allows me to function.

I've mainly focussed on toilets here, but the same applies to seating in public places and on transport as well as any other facility which is designated as a priority for disabled people. It may not be immediately apparent why we need these things to be available, but we really do benefit from them.

Now for the tricky part. If I didn't have my stick, most of the time you'd have no idea I was disabled or chronically ill. I don't show it much. Even with the stick some people look sceptical. But just because you can't see my disability doesn't mean my need for accessible facilities isn't there. You don't get to challenge, you don't get to question, you don't get to be the one who decides if I am disabled "enough" to use something. You just have to accept that I know what I am doing.
If you aren't disabled you also shouldn't be using those accessible facilities. If you are able bodied and using a disabled toilet then that means somebody who needs it is having to wait longer, possibly at a detriment to their health. But, when we see you come out of the cubicle, we have to show you the same respect that we want to be given. We don't have a right to challenge, because how do we know if you are disabled or not. The responsibility therefore lies with the able bodied person to do the right thing. To give up a seat on the bus when somebody asks, even if you don't think they look disabled.
To realise that your "tired" is significantly different from my fatigued and that maybe you can manage the extra 20m to the normal toilets and let me use the accessible loos. To not stare when I get out of a swimming pool without use of a mobility aid, but then walk in to an accessible changing room.

We have to trust you and we need you to trust us.
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