Eye Movement Dysfunction in M.E. Patients

Interesting results from the trial I took part in last year.

Label-ism

Link being passed around on twitter to this article. It's all about how some people re-designed the  static 'disabled' symbol used in parking bays, etc, so that it looked like this instead:

The claim is made that it changes the perception of the disabled.

Indeed it does.  It changes it even further towards a perception that all 'proper' disabled are self-propelling potential athletes. Screw those lazy buggers who use powerchairs, eh? And those who don't use a wheelchair at all.

Frankly, there is already too much of the massively-misguided 'hey, how come you aren't all disabled Olympians?' around. We even, rather soul-crushingly, see some disabled people claiming to be 'the true disabled' as compared to the chronically ill. (Articles here and here  - the latter out today and literally breath-taking in its spite and stupidity.)

Wanted to like it, understand that it was very well meant, but can't.  Perhaps they could design another symbol to include those who cannot self-propel, and use both? Not only the self-propelled disabled are... well...disabled.

Any morning, 3a.m.

Me again, having the urge to write here again for the first time in a long while. It almost goes without saying that I'm angry and sad. Who wouldn't be, on a day where a UK Court of Law decides that discrimination against disabled adults can be legal?

Why did I stop writing in the first place? Partly because the blog went in the direction of trying to keep up with scientific state-of-play on M.E., only for me to discover I lacked the energy and cognitive ability to do that well - it was being done superbly by other people. Partly, I went through a long-ish relapse when energy was very low and linking to stuff I felt important/interesting via Facebook was simply much more ‘do-able’ than putting together blog posts. And partly, I needed to for a while stop submerging myself in news and information about my illness – it already dominated too much of my life, and I wanted the internet to be my portal to the outside world, somewhere I could put my thoughts and feelings and life before my chronic illness. Pretend, if you like, to be ‘normal’.

It’s good that I stopped. Not least because it spared people loooooong rants last year at Paralympic time.

And now that I’m writing again, this isn’t going to be an ‘M.E. Blog’ anymore. During the ‘quiet months’, a lot has changed. When I first wrote on here about deciding to start using a wheelchair (remember how excited I was????) my biggest fear when I went out was of being looked at with pity. It is now of being not only looked at but treated with hostility. Of being automatically labelled in many minds as a ‘scrounger/shirker/faker/thief’. Of being seen as a legitimate target for sneering, accusations and abuse. Things have changed that much, that fast. Until we have come to the point where forcing disabled people and carers from their homes is supported by law. Here, in the UK, in the twenty-first century. 

So fair warning, Wood of Thorns from now on is likely to be a lot about me being angry – and sad, and bewildered and sometimes despairing and sometimes riotously joyful . 

But today, it’s about fear.

I think we all have a ‘3a.m fear’, some persistent imagining that looms suffocatingly up in the dark insomniac hours when your defences are low. I’d like to share mine with you, so you know where I will be ‘writing from’:

In my 3a.m. imaginings, something has happened to Anthony, removing at one stroke husband, financial supporter and carer. In one stroke, I become utterly dependent on the benefits system for food, warmth, a roof over my head and the ability to travel further than the end of the street. The home I love is, of course, deemed more than I need (?deserve?) since it has more than one bedroom. So I lose it. I try to find homes for my beloved cats, often my only company day after day, because I cannot afford to feed or care for them properly. How empty my home and life is without them. Without a carer, my illness worsens, and it’s decided that since I need care, I must be placed in an institution – since that costs less than providing care in the home, with the added bonus of making me invisible. I refuse to go, so I’m sectioned. Forcibly removed from my home. And at 3a.am, when this happens? My neighbours do nothing. Because after all, the government knows best and the books must be balanced.

There isn’t a single day, however bright, that this fear doesn’t tag along with me like a second shadow. I used at least to be able to tell myself it was an unrealistic scenario, but today I...just can't.

And having said that, I ask you to bear in mind – I am one of the lucky ones. I’m one step away from the edge.  Too many people have already fallen over it, because no one will build even a tiny fence to stop it happening.