Friday, 30 March 2018

WOW HOW TIME FLY WHEN YOU'RE HAVING FUN....NOT.

I hadn't actually noticed how long it had been since I had actually submitted here and a lot ...I mean A LOT has happened.

So as a quick catch up (try to keep up), going to quickly go through every thing now....

Finally finished University after having some resits to do. Unfortunately due to family circumstances ( which will become clear very soon), I had to leave with out my honors..which is sad.
My sister has been back and forth to the hospital with various cancer scares and at one point they thought the brain tumor she had had removed was back but it was a false alarm.

Then my husband collapsed in November whilst at the gym and was rushed to hospital. At first it was thought he had epilepsy so they carried out various MRI scans only to discover that he had a tumour in is right frontal lobe. That was just before Christmas. He went into hospital on the 2nd of January and had the tumor removed. Luckily the results came back as a grade 1 and we are just waiting on his next scan and appointment to make sure it hasn't returned or bits haven't been missed.
However we then found out he had a heart issue as well and has to undergo various heart tests only to find out that he has a hole in the heart and now has to undergo more tests with possible open heart surgery...yea that
The piece da resistance came when my dad took bad and stopped eating and drinking. Within a matter of weeks he could not walk or swallow and became agitated. He died on Mothering Sunday 11th of March, his funeral is on the 4th of April.

So there is a very quick overview of what has gone on in my life since the last I wrote.

Why am I writing now? Well to be honest I have had enough of the way society is now. I want to be a  person who speaks out , people with all kinds of disabilities are not being heard. Everything in this world is catered towards people who do not need to think about the same things we do before they go somewhere..anywhere. When you are a disabled person that all changes. there is so much you have to think about.

Too many people are affraid to speak out about disability for what ever reason, I want to be that one person who does. it is time the world and society as a whole took notice that there are disabled people in the world, in society. we do exist and we want to work, have a life, we want to do things that every one else does. We understand that there are going to be some things that we just can not do due to various reasons and that is fine, but the things that can be adapted we should be able to do and we can't...that's not fine, society, the world should start taking notice of that.

There are always protests for something, at the moment its gun control in America so there are protests against the NRA, protests from planned parent hood and these get huge media coverage. What about what is happening to and against disabled people? where are the protests, the media coverage? equality in wages is being debated and gets news coverage, what about the inequality that disabled people suffer from? There is protests and huge media coverage around the #MeToo campaign, Black lives matter, and then the coverage at the Oscars over how not enough black actors are getting the recognition they deserve...but hold on...don't disabled lives matter? Yes they do ,isn't there disabled actors, screenwriters, producers, directors etc out there that deserve recognition as well?Yes there is, but .. oh hold on no because Hollywood and the film industry in general would rather disable up an actor then actually use some one with a real disability instead of giving disabled actors a chance or up and comings their first break,  or just CGI the damn character altogether.(Don't get me started on this topic !!!), but "black" up a character well all Hell breaks lose. Double standards much??

So I ask again, where is the media attention on protests for people to get care in their home or to go out to work or have a life? There is none. I am talking about people who need care just so they can get out of bed in a morning, help to go to the bathroom, dress, shower and have a hot drink and meal more then once a day (I know us disabled we take the piss asking to eat and drink more then once, but what can I say? we are rebels). This is just to do the things that the majority of people take for granted, day in and day out. Now that care is being stripped away. Not only are we being isolated from society and activities that everyone else does, (God forbid we would want to have fun or a social life ) because business, shows and events have ousted us or forgotten to cater for us but we are now being shut up in our own homes or worse yet forced to leave. Sometimes if feels as if society and the world are forcing us to be housebound, the whole "out of sight out of mind" thing from the 40s 50s and 60s. I have gone weeks with out leaving the house , not being able to interact with anyone outside the people I live with and not being able to take part in social activities.

The hassle that most disabled people have to go through to  go out even for a couple of hours can be a nightmare and that is another thing that puts you off. I need to think about how to get there, is there stairs or do they have a lift, do they have disabled toilets and if so are they big enough for a wheelchair, is there steps to get into the building and if so will they have a ramp? I have been to restaurants before where I have had to enter by the kitchen,down a very steep ramp that the delivery's are taken in by, that has had a huge 6ft drop to one side and through the tiny kitchen and to my table. Do you have any idea how that feels when you are going out to a posh, expensive restaurant and you are wearing a lovely expensive dress and its meant to be a special occasion?Any idea how degrading that makes you feel? No you wont and more then likely never will. 

Business, shows, events will only provide what they have, to the letter of the law and no further. Don't get me wrong they are companies out there that do go that extra mile and God bless them , for one am eternally grateful and thankful, but unfortunately the majority wont and dont.
I have had a hotel tell me, and advertised they where disabled friendly but had 3 steps up to the entrance and no handrail or ramp, there answer wast to send some porters out to carry me up......no ..nope..not happening mate.
I have had a cheaper hotel chain who's idea of disabled accessible room is to have wheels on their beds so they moved instead of raised solid legs and their idea of accessible bathroom meant a lowered bath and handrails every where....great am in a wheelchair with no legs soooo tell me how this works? It means that short stays when its not really necessary do me to have a shower there its meh but any longer then one or two nights and the cheapest option is ruled out. I have traveled by train and been left sitting at the end of the line waiting for some one to help me off with a ramp or been put on a carriage that was not wide enough for my wheelchair to get to my space or even better having to go into a carriage with no disabled toilet and no way of getting my wheelchair through to the carriage it was in.

Luxury brands are even worse ! Apparently being disabled stops you form wanting to be romantic with someone or splashing out on yourself for a special occasion or is it just because the people that go to these places all the time might be offended or upset by "gasp" "horror" a disabled person? 

Business of all types are loosing out on a fortune in sales and potential customers due to not paying attention or going the extra mile. I can not be the only disabled person out there who just point blank refuses to shop at or go into certain shops? 
For me the biggest pet peeve is Claire's. Sometimes its a double whammy, you struggle into and around these shops/events/venues only to have staff ignore you, pretend to be busy or talk to the person with you as if you are an idiot all because the company couldn't be arsed to do a quick course on disabled awareness. It seems the only way to get help is to draw unnecessary attention to yourself by either shouting across the shop or knocking things accidentally off shelves as you try to squeeze past, therefore drawing ( some what embarrassingly) attention to the fact that the person you have been ignoring for the past ten minutes by picking your nails intently or finding a piece of thread to pick off something or a box to move somewhere else, actually does need help. In the meantime not only have you drawn attention to your desperate need for help but lots of nosy, interested shoppers who will mill around to see what is going on and then whisper to their companions, sometimes not quietly about you or tut tut as they walk away. (it seems to be that companies also forget to train their staff to offer help as under the Disability Act 2010 ALL business should offer disabled customers access to ALL of there goods, this means that if you have something I want and its upstairs with no lift then you should offer to get it for me or if am not sure but give you a rough idea then staff should bring me a selection if I can not access it  ie along the lines of a personal shopper but with out the bossing around having them run around for you all day, yes some disabled people are wankers too).
It seems to get any media coverage on these things we have to degrade ourselves to the point of wetting ourselves on a train or being stranded for hours before anyone is interested, then once the shock value has worn off , pretty much like the shoppers, interest dwindles until the next disabled person has a shock value, media interest story to tell.
 I have been to events where photo shoots/ props for shoots have been up on  a stage and no way for any one with mobility problems or in a wheelchair being able to access that and no way for these props to be brought to them....thats discriminating as it could have been organised better so that it was accessible to every one who might attend. I have also wanted to attend events that have had a themed bar upstairs but again no access for some one who cant use stairs and again no way of bringing that experience to them.....again discriminating. All it takes guys is a little thought, not only are you discriminating but you are losing business and so is the stall or provider.

People who have the blinkers on only care when it happens to them or someone in their family then its "ooh we should have this and we need that and its not fair " You know what mate you didn't give a flying one before until it happened to you. I have been living with one form of disability or another since the day I was born nearly 49 years ago ( only recently been accepted into the grumpy git club lol).

Companies/business/event organisers should think about how much potential revenue they are losing now and how much in the future as disabilities are on the increase. Think about the customer and what they need not just profits as my Granddad used to say " look after the pennies and the pounds will take care of themselves" How about when you are designing a building you actually get committy of disabled people together to look at the specs? what about if you are redesigning a shop you actually get some one disabled in to  go around it to see if it works? what about if you are kitting out a hotel why not bring in disabled consultants who can go through everything that could be possibly needed such as bath boards, hoists and raised beds? If you are organizing an event or show look at the spaces available to you then look at where you are placing stalls, guests and props.

All I want to do is to be able to go out with my friends, be romantic with my husband or have fun with my family and am sure that's what all disabled people want at the end of the day. so listen up and wise up....

All we want..is to be heard
All we want is to be seen



Wednesday, 3 May 2017

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.

Saturday, 11 February 2017

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.