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.

Friday, 17 June 2016

Britain, you have hurt me

Yesterday I found myself posting twice to Tumblr about how my country had disappointed and hurt me. Twice, in one day, about two separate incidents.

The first:
Two rival political factions battling on the Thames with water hoses should have filled me with glee yesterday. Instead I found myself avoiding all mention of it and actually becoming increasingly angry.
They have already undermined an incredibly nuanced complex and far reaching political issue by turning it in to a populist issue so then to have official representatives of the campaigns literally turn it in to a water fight was beyond distasteful.
This is an issue that could have a huge impact on the lives of thousands of people. It could have huge lasting ramifications on how the country is run and the legal safe guarding of some of societies more vulnerable people. and they turned it in to a water fight.
They are making a mockery of the democratic process in this country. They are making a joke out of a serious issue. By making it in to a farce and a game they are taking power away from the voting public.
To quote a friend
“ Fucking millionaires playing games while the people of the U.K. suffer the ill effects - perfect illustration of politics in the UK too often these days. “
And the second:
I am hurting today.
I was already hurting following the Pulse shooting. I was hurting following the mockery of democracy and our population by prominent politicians.
Now I am hurting because here, in the county I live in, a politician by the name of Jo Cox, was murdered. She wasn’t just murdered. She was assassinated in an act of domestic terrorism.
They were shot by somebody shouting Britain First. Whether it had the backing of that hate group or not doesn’t matter. She was shot because that man believed that he should and should do so because of his Britain First aligned views.
That makes it domestic terrorism.
A woman was killed because of hatred and xenophobia and bigotry.
Even if if this was one idiot acting alone his actions have come from a place that is deliberately trying to divide the nation stir up “patriotism” and has encouraged xenophobia and right wing nationalism. It is shameful. I am ashamed that my passport says British just like that murder’s and just like the people, the politicians, who have encouraged an environment where that sort of murderous hatred can thrive.
Now, let's set things straight, these aren't the first time I have felt let down and hurt by my country. When government proposed and voted on cutting ESA payments yet again, that hurt me. When the government proposed a wage cap on non-EU immigrants, that hurt me. Every time a newspaper printed false information about the number of "cheating" benefit claimants, that hurt me. When doctors pleaded not to have a dangerous and inhumane contract forced through and were ignored and belittled, that hurt me. When in May last year, on my birthday no less, the country voted in a government who had continuously torn apart the country, taken money from people who needed it, grown fat for the suffering of others and who had repeatedly told me and thousands like me that I just wasn't trying hard enough, I was hurt.

So what was different yesterday? They say that people with addiction have to hit rock bottom before they can better, and that when you think they have hit that low point they will always find one more thing that is even lower. Well yesterday was my rock bottom. I thought we had hit it so many times before, but yesterday was just that little bit more.


On June 15th as two flotillas of boats representing official government campaigns, hosting well known politicians, met on the Thames to blare music and engage in a water fight we were shown the utter contempt that our government shows for the population and our democratic process. Until now they had at least hidden behind official language, gone through the proper motions of dressing their idiocy up as official business. They had at least maintained the pretence of acting democratically and allowing the population to take part in a democratic government, had at least pretended that the informed view of the people was relevant and that they didn't just do as they pleased.
But, as they turned a serious referendum into a pantomime, they showed that their only concern is to keep the population entertained and sated, like docile infants, whilst they focus on their own concerns. They sneered at us. They showed us contempt.

Then on June 16th, MP Jo Cox was murdered by a man claimed to be shouting "Britain First" the name of a violent, racist bigoted far right group. Jo Cox was infamous in parliament for being fiercely in favour of supporting refugees and migrants. She was a staunch supporter of ethnic diversity in the UK as well as being pro EU. Whilst Britain First have of course denounced the murder in official statements, a cursory look at their online groups and forums, as well as subsidiary groups and other far right groups on FB will show that there are many who are vocally celebrating her death, who are congratulating the murder on his work and saying that this is what "needed to be done".

This wasn't a murder carried out in isolation. This wasn't a "mad man". This was a murder, an assassination, that had an increasingly right wing, xenophobic, hate-filled culture to thrive in.
That's why these two incidents aren't entirely separate. A water fight on the Thames and a brutal murder are both born of the same political climate.
We have a government that actively encourages dividing the nation on moral and ideological ground. We have a government that actively encourages and perpetuates racism and xenophobia through falsehoods and misinformation as a part of their political campaigns. We have a government that supports and benefits from a right wing press and that stands by and allows without repercussion , lies and blatant racist slurs to be published. We have a government that actively fear mongers, and reduces complex issues to single inflammatory stories so that they can distract attention away from country crippling policy. We have a government that does not want to public honestly engaged in politics for fear that their power would be undone. We have a government that ignores expert reports, consultation and inquiry when they feel it doesn't fit some mythical "bigger picture". They make villains out of ordinary people and those in dire need so that they can line their pockets with ill gotten profit and then blame the straw-man they have created.

I have been let down by a government that reduces serious debate to a floating pantomime and creates a culture that encourages the murder of an innocent woman, all in the name of their so called democracy.

So shameless in their pursuit of profit and power they do not care for the figurative death of democracy and the literal death of an MP.

Saturday, 11 June 2016