Home truths – despair settles in

It’s been a while, dad has been moved into a care home due to his dementia getting worse and then was rushed into hospital where we were told that he had bowl cancer and things amped up at university with it being the final year. Change of location as the Psychology department was moved from St Peters campus to the City campus, final assignments, exams and final dissertation.

Speaking of changing campuses the trouble this has caused for me is unbelievable.   The move to the city campus was supposed to be a smooth transition until I found out that none of the lessons I had at the Priestman building where accessible. Add that to the up and down situation with my father, who as you may remember has mixed dementia, has caused me to miss out on workshops and lectures this semester. Leaving me at a disadvantage regarding my upcoming exams.

This all ended up with me in tears yesterday trying to hand in my dissertation project book and being unable to access the building and a able bodied woman banging on the toilet door in the shopping centre telling me to  hurry up…the disabled toilet  that is, which was being used by someone in a wheelchair…me.

People really don’t think do they? I mean we are supposed to be a society of caring, responsible, intelligent and understanding people…aren’t we? No… we are not!

I personally think that we as a society and a race we are de-evolving. I have tried for years to debunk the “them” and “us” divide but am wondering if it’s true after all.

No one will ever understand what it is like to get up every day and have to ask someone else for help you just to do the smallest of things like get out of bed, put pants on or stand up. It’s not just the embarrassment but the mental anguish it causes. I hate the way I am. I don’t enjoy it. I didn’t want it. It just happened and am left with the aftermath.

Society and the government sees me as a drain on resources, an inconvenience, someone to be singled out and criticised. Scapegoat for fraud, rising unemployment figures. My peers either pity me, or blank me there are very few who support me and have stood by me throughout this, but they, no matter how had they try can never understand what it is like. I have lost count of how many friends don’t bother with me anymore, or how often am over looked when it comes to nights out or family events, it’s an inconvenience you see. Me being in a wheelchair.

I  sometimes need help to sit up, get dressed, pick up things off the table or floor, get tablets out, and cook a meal. Don’t even get me started on having a shower. I can’t do stairs and need someone to help me step off a kerb. I can’t go anywhere on my own as I need someone to push me, I can’t walk the dog, go for a walk, swim, dip my toes in the water, go in the sea, walk on the beach, feel the sand between my toes, clean my own house, get to the girls room, wear funky socks, soak in a bath or even get in a bath or feel a carpet under my feet.

I take tablets morning noon and night and then in-between. They make me gain weight and bloat me even though I barely eat I still gain weight and can’t lose it. Yes I have the odd treat but you look at me, a larger lady in a wheelchair with no legs and the automatic assumption is “who ate all the cakes, pies and biscuits” and it’s thought that the legs where lost due to being fat, over weight and diabetic. They weren't. I feel disgusted in myself, don’t worry. It has been said to me that by someone that I am the reason that they have an eating disorder….they don’t want to turn out looking like me…fat.

The disabled complain about the “disabled porn” how we shouldn’t be inspirations, bollocks to that! I hope I am an inspiration to abled or disabled people. I work hard just to do day to day stuff never mind go out, work or go to university. 

I feel dead inside.

 I have sitting in front of the telly not leaving the house unless it’s my weekly one day a week trip to the town or off to the doctors or hospital to look forward to. No one would hire me due to not being able to guarantee when I would be in. I hate the way I am, I hate the way I look, and I hate my size. “Just go on a diet” “you need to move more look for wheelchair exercise” “just go on slimming world I did “yes and you lost weight because you are more mobile than me…it’s not that simple. I wish it was.

I get up every day, some days when I don’t want to. Some days I just can’t face it but I get up. Everything you take for granted, every little thing you do, needs the utter most planning for me to do or participate in, that’s if I can.

 A day out with my family, a meal, a trip or a holiday needs to be planned to every last detail. Access, toilets, fitting through doors, getting round, getting there. I worry constantly about getting in the peoples way or blocking things or places. I worry about being an inconvenience, the embarrassment and the mental torture I put myself through. When something goes wrong or there are issues accessing 

somewhere or something it makes it worse, it’s like ramming it home, rubbing it in my face.

I just worry.

This is not what I wanted, despite what you might think. I want a life, I want my life, I miss my old life.

Disabled Access vs Disable friendly - there is a difference.

There are times when you just get so fed up of trying to fit in to peoples boxes or ideas of what being disabled is supposed to look like, feel like or how it is supposed to affect you.

Being born with talipes I thought I knew what it was like to be disabled, different from everyone else and the difficulties that went with that…..I was wrong, so very wrong! It wasn’t till I had my amputation and got diagnosed with Fibromyalgia and Chronic Fatigue Syndrome that I found out what it was like to be disabled.

It’s so depressing and soul destroying when all you want to do is go out and enjoy yourself whether it’s for a meal, drink or shopping, holiday or stopping somewhere over night and you can’t or it’s just too much trouble to organise. Why? Because everything has to be planned in advance.

Is it accessible? Will I be able to get through with my wheelchair? Are the toilets downstairs? Do they have a disabled toilet? Would someone be able to push me up/down the bank safely? Is there a lift? Could I reach the bar? Am I going to be ignored/ stared at/ treat differently to everyone else? Can I get into / on to/ out of that?

These are just some of the things that I have to take into consideration every day when I want to leave the house to do anything. Gone are the days of just being able to get up and go without worrying.

You see people who don’t have to live with someone or who aren’t disabled themselves, things like this don’t even cross their minds or come into the equation. It creases me when shops, business, hotels etc have things on their websites like “disabled friendly” or “accessible” but when you turn up what they meant was they have a lift but you need to get up three or four steps to get into the building, or the door ways are maybe a little wider but still not wide enough for a wheelchair to get through or they are wide enough but there is a 90 degree angle to negotiate as soon as you get through the door.

What people and companies don’t seem to understand is “disabled access” does not mean the same as “disabled friendly”. For instance take my university. The psychology department has been moved into another building which is supposed to be disabled friendly, I say supposed to be as I haven’t used it as all my lectures are in other buildings. These other buildings are old, fair enough a grade II listed building means there are limitations to how it can be adapted if it can at all, I get that, but it’s as if the people they get in when adapting, updating or building these buildings have their heads up their arse. One building where the majority of my classes are they have literally took it to the letter of the law. They have made reasonable adjustments but just because they have made it accessible does not mean I can use it. The entrance is ether the service entrance, where I have to find someone to let me in or up a bank that you would need to be a strong man or marine to push me in my chair up the bank or back down safely. The lecture theatre is small with no disabled space for a wheelchair and if I was to use it I would be sat at the front of the class like a pleb in front of the only entrance/exit…can anyone say health and safety?

The inside is a horse shoe shape and is corridors with two or three steps up or down every so often so it means getting into a lift to go half a floor every time I change classroom, so much carry on, inconvenience and effort. All I want is to be like everyone else at uni..The only effort I want to worry about is getting out of bed in the morning and being arsed to attend!

It’s made me realise that everything I want to do, everywhere I want to go and everything I want to experience I have to work harder, or take longer or worse yet become a performing monkey while others stop to stare at the antics you have to go through just to do something that is taken for granted by everyone else.

And this seems acceptable, as a disabled person your dignity, pride and self-respect doesn’t seem to matter anymore because “we have made reasonable adjustments”. Reasonable adjustments is more than making sure there is a bloody lift!

It’s the same with shops that you can’t access for whatever reason “reasonable adjustments” means that if you can’t access their goods/ services then these should be brought to you. I ask you do you always know what you want to buy when you go to a shop. Or sometimes do you just want to browse? Especially if that said shop is new/ just opened. I don’t so when I go to a shop that I can’t access and someone eventually realises they have to help me access their goods this means I have to know what they have in the shop, what I might want to look at /buy….hey I am studying Psychology not bloody telepathy ! How the hell do I know what you have in your shop? That’s why I want to come in and have a look!! Hey don’t even get me started with the not being able to shop in privacy like everyone else instead of having my buying habits scrutinised by all to see. The temptation to go to Anne Summers and ask them to bring out various items from the back of the shop for me to view…..“I would like to see the 12 inch strap on with the deluxe gimp mask but not the ball gag…”

This is one of the reasons I started doing what I do with The Psych Twins if you are to redesign a shop, building new premises, holding an event etc get someone in who is actually disabled for god’s sake, not someone with a degree in technical drawing who “thinks” they know what it’s like to access these places in a wheelchair.

These people who design the buildings to be “accessible” or make the “reasonable adjustments” have no idea how much of an impact on someone’s life in so many different areas their decisions make. Why would they? After all am alright jack.

It’s not just the pain in the arse advance planning that has to go into everything I do or go, nor is it the fact that there are things I just can’t do/access or the fact that family/friends/colleagues stop inviting you places due to the “hassle” but the being put on display trying to access/ do whatever it is, the loss of dignity not to mention the self-loathing and depression that goes along with it.

Don’t get me wrong am a strong person (well I think I am), but am not made of stone, eventually these things do effect you and upset you am only human. Things such as anxiety, panic attacks, social exclusion, isolation and depression. The feeling that you are continuously on the outside looking in watching everyone else living their lives and having fun. Hotels I can’t stay at, beautiful rooms that I can’t stay in, holidays I can’t take, excursions I can’t go on, experiences I can’t have, Luxuries that aren’t accessible. The list goes on.

Then we talk about jobs. Another area that boils my piss. I want to work but am what you would class “unemployable” due to my health issues. Companies need to think about money and time and keeping backsides on seats and I get that. Another reason I started my own business. But I always feel guilty for not having on my CV or telling them (if it’s an agency) that am disabled and in a wheelchair before being put forward for an interview. It’s like turning up and shouting “surprise !!!” at them, the look on their faces is like the Christmas present you get of your least favourite aunty of the horrible jumper or your parents finding your porn stash…yea that look.