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