Tuesday, 12 May 2015

Soft in the middle - ME Awareness Day 2015

A man walks down the street , he asks "why am I soft in the middle now? Why am i soft in the middle? The rest of my life is so hard".
(Paul Simon- You can call me Al).

I've often been told how brave I am or how well I'm dealing with this. But the truth is that inside, like most people,  I'm as soft as.. well... a very soft thing. If anything, I'm softer than I ever was. Yes, being ill teaches you to be tough, to roll with the punches and all those other cliches.  But us sickies are all softer inside than we care to let on. 

Having this illness drains you of everything you have. They don't come much more positive than me but this is pretty damn hard.

I have been disbelieved by medics and forced by psychologists and physiotherapists to do things which have worsened my condition. Made to feel responsible for my decline in health. I have lost my job. My promising career. Social life. Friends. Options. I have been robbed of the life that I wanted, planned for and deserved.

I had some recent stress in my life which has made me a bit worse than usual. Whether it's a full blown relapse or just a glitch I don't know yet, but with this illness every setback comes with the questions... "Is this going to last? Will I improve again? Will I get worse? When will I be back to where I was?" and these questions will never be answered because frankly, nobody knows.

As treatment after treatment doesn't work (and some even exacerbate your symptoms) the options run out. It becomes a case of 'management' over treatment. Well I don't want to be 'managed'... to spend all my time at the hospital and GP surgery having my symptoms kept under control. I want to be out there living my life like I used to. I want to make a difference.

I have to watch as the illness is given no funding, no interest, no priority. As friends are hospitalised or die of the illness, and others end their lives through desperation and despair. I have to use my limited energy to get a message out there, to campaign for my illness to be recognised as the bastard that it is. 

We don't want sympathy, we just want recognition, research and answers that lead to treatments- treatments that help and do not harm. Surely that's not too much to ask for the 250,000+ sufferers (in the UK alone).


I am terrified and desperate and need help. There's nothing very tough or brave about that. But I have a feeling that even the toughest badass out there would struggle with this one. 

Friday, 1 May 2015

INVISableism : Blogging Against Disablism Day

Being prejudiced or discriminatory towards people who are disabled has two names: disablism and ableism. Only something so completely mad and pointless could have two seemingly opposite names which mean broadly the same thing. One is spelled with an 'e' (ablEism) and one without (disablism).. which actually is a completely pointless observation but one which bugged me all the same. 

But let's just go with it. But because it's so ridiculous and for the purposes of this article lets introduce a third term- which I will call ..InvisableismBecause I'm going to talk about when you have a disability that is invisible to others (as opposed to being discriminated against on behalf of the fact that you are completely invisible. Something, which you will see, is not a problem in this case).

There is no judgement here. I used to be just like you- able to stand up for as long as I wanted, walk, concentrate for long periods of time, work, socialise whenever I wanted, walk, stand up for as long as I want, walk....stand up.... walk ... and I must admit that I only knew personally ONE SINGLE PERSON who used a wheelchair. I wasn't a stranger to disability on the whole- as the daughter of a social worker and a nurse one could not be completely immune to social justice issues. I had also spent some time working in a school for children with complex special needs which included being the one-to-one carer of a teenage boy who was a severe epileptic and wheelchair user. I was well in tune with learning disabilities but as a 20-something adult, the only wheelchair user I knew outside of work was a friend of a family member.

And I am now ashamed to say that I did not give physical disability a thought. I never did things thinking how difficult or unachievable it would be for someone with a physical disability, and, worse than that, when I went to gigs I actually ENVIED people in wheelchairs because they got great seating. I am a terrible person, I know.

If you haven't stopped reading out of sheer contempt for the old me, then I'd love it if you would read on. Because shortly after my 30th birthday I became a Disabled Person. Which was devastatingly difficult. But I didn't have any problems as long as I looked disabled enough.

And unfortunately (and fortunately) for me, unless I'm using my wheelchair or I have a bad case of the BESEs (big-eye-small-eye- see photo) ... my disability is largely invisible. Except if you live with me, when it is glaringly obvious how different I am to a fully functioning human being. And herein lies the problem. Society at large has a very prejudiced idea of how a Disabled Person should look and act. 

Bad case of the bigeyesmalleyes!

The biggest example of this is when I am using my wheelchair. People smile at me (so much so that I have exhausted myself and had to go home almost straight away just by the sheer effort of smiling back at everyone).  People are so helpful, caring, thoughtful and chatty. They want to help, to brighten my day, and by and large seem far less judgemental than i feared they would be (remember, I am a newbie at being disabled and rarely get out and about, thus my own preconceptions about how I would be treated). I began to believe that this was how it would be, and that my fears about 'outing' myself as a Disabled Person were unfounded. 

A lady followed me around a shop just in case I needed anything from a top shelf. I got stuck in a doorway and two police officers came running to help. A friend of mine found their wheelchair too wide to fit through a doorway and was CARRIED through the doorway by two helpful strangers (she didn't have the heart to tell them she could actually weight bear and walk a little). You get the picture, people bending over backwards to help.

Yet swap the wheelchair for a mobility scooter and things change dramatically. 

One day at the local shopping centre that I occasionally frequent (due to their excellent Shopmobility services) they were all out of power chairs. I had to use a mobility scooter instead. I was wary of using one of these as in my mind they are synonymous with crazy elderly people (another of my own prejudices creeping in) but decided it was worth it to get my shopping fix. Things could not have been more different to using a wheelchair. People did not move out of the way. People looked and tutted and glared at me as if I was personally wasting their shopping experience. I got no helpful offers, no smiles and no chat, not even any eye contact. Yet I was the same person, with the same disability. The only difference I had made was my mobility device. 

It would seem that someone in a wheelchair is Legitimately Disabled, whereas someone using a mobility scooter is not. There is some more information on the reasons for this in this article: "The Trouble with Mobility Scooters"  however the main reasons are supposedly because of the rise in use of these scooters by people who do not strictly need them.

There are similar discrepancies apparent elsewhere, for example with walking sticks vs crutches. When I am using my walking sticks people scramble to find me a chair, ask if I'm ok, if there's anything they can do to help. No-one asks what happened to me, why I'm using sticks.  But when I'm using my elbow crutches I get constant questions about why I'm using them, such as "What happened to you?" said in a jokey voice, or "What have you done to yourself?". Again it would appear that using a walking stick or two means you are probably a Disabled Person, whilst using elbow crutches means you've probably had a leg injury. Most likely ski-ing or some other fun and exciting activity which makes a good story. 

And when trying to park in a disabled bay when with my friend who happens to have a big Mercedes 4x4 as well as a sporty little two seater we get tuts and stares galore. I can only assume people think we are abusing the parking space because we are in a nice car. One day I almost put down the window and shouted "DISABLED PEOPLE CAN HAVE SPORTS CARS TOO YOU KNOW!!!!"  but I'm sure my friend was glad that I showed some restraint on that day. 

So, as a summary, here are the misconceptions and realities as I have discovered them.

Misconception 1: Person in a wheelchair = legitimately Disabled Person, who (through no fault of their own) is unable to use the lower half of their body. This person must be helped however possible as they are a poor wee soul. 

Reality: Anyone can buy and use a wheelchair. Anyone receiving a wheelchair distributed by the NHS (like  mine) are of course assessed but others are not. Many people who use a wheelchair have limited use of their lower limbs (see next point).

Misconception 2: Person in a wheelchair who can get out and walk a few steps or stand up to reach something on a high shelf = FRAUD! They were using a wheelchair but THEY CAN ACTUALLY WALK!! These people are to be scorned, stared at, tutted at and generally judged in an open and harsh manner.

Reality:  Many wheelchair users can transfer their own body weight, stand up and walk a little. In fact, you wouldn't sit down all day if you didn't have to so it makes sense for a wheelchair user to stand up and have a wiggle and stretch if they can.

Misconception 3: Person using a mobility scooter = Lazy. If they were genuinely disabled they would have a wheelchair. Do not move for these people or let them past or help them in any way. Draw a dirty look and comment under your breath if they dare to get in your way. 

Reality: Whilst it might be a reality that mobility scooters are becoming more popular with those who might not qualify for an NHS wheelchair, there are many people for whom mobility scooters will transform and enrich their lives.  Many people who use them are overweight because their disability prevents them from exercising or (as in my case) their illness means they are extremely immobile and they are at home all day and completely reliant on others to feed them. Their illness may cause bloating and fluid retention and their medications may contribute to weight gain. The point is that just because someone is overweight does not mean that we should judge them.

Misconception 4: A person in a fancy car parking in a disabled parking bay must be abusing that bay. There is no way they can be disabled driving a car like that!

Reality:  Er..... really? How ridiculous. 

Misconception 5: That person cannot be as sick as they say they are, I saw them at the shopping centre on Tuesday and they looked fine!

Reality:This is a misconception close to my heart. If you know a  bit about my story then you will know that I have a fluctuating condition. There are days when I feel well enough to go out for a short period of time with a friend or family member. Most of my Facebook photos are me smiling, having fun, sitting in the garden, doing some crafts. When I do go out I spend time dressing nicely and doing my makeup because it makes me feel good. These are the parts of my life that make me happy. I am not going to hide them away in order to maintain my "ill enough" persona and will not apologise for this. 

I could go on. I have MANY more stories of invisableism. Such as when I slur my words because of my illness and people assume I am drunk. However I'm pretty sure I have got my point across and we all want to finish reading this post before we grow old.

Invisableism is a real thing. It affects my life. I was guilty of it before I became a Disabled Person but now I understand. A disability can be invisible and it is not up to the general public to judge if a person is 'disabled enough' or not. Life is hard enough as it is, let's stamp it out!

This post was written for Blogging Against Disablism Day. For more posts and info go to Diary of a Goldfish.