Inspiration Porn

Inspiration porn is a term you may have heard or read at some point from the disabled community or Pc “abled-bodied”….It basically means when someone who does not have a disability looks at someone who does have a disability leading a “normal” life and sees them as an inspiration for doing things that anyone would take for granted such as raising kids, going to work or going out.

Don’t get me wrong, I don’t want people to think am an inspiration for them just because I had kids or got married, but I want to be inspirational to someone if I have done something that is amazing that even if I wasn’t disabled would be incredible.

Abled bodied ( I hate that term by the way), or disabled, overcoming the odds should be celebrated and used by others as a benchmark of just what can be possible if we put our minds to it. Humans are great at adapting and finding new ways of doing things, having a disability is no exception.

Things  I hear often are, “you're so brave,”” I don’t know how you cope,” and this is to just do with me being in a wheelchair let alone living my life! What I don’t understand is the need to have two distinct groups of people, disabled and nondisabled or abled bodied, whichever term you prefer to use. How can we have full inclusion if we are going to get bent out of shape over language that is used? It just propagates the whole “them and us” thing.

I agree words hurt, like one of my favorite Pat Benator song “words are like weapons”, and  people should be careful of the language they use and the labels they put on people. Certain words and turns of phrases are just not acceptable, at all, under any circumstances, but people need to stop getting bent out of shape over everything, Political Correctness, in my opinion has gone wild. It has now got to a situation where the divide is bigger and the hate crime is on the rise. Because of all the PC language and the bickering over what terms should and shouldn’t be used, people have no idea what is acceptable and this makes them scared or embarrassed to talk to anyone who is different in any way in fear of being offensive and branded bigot, racist or accused of a hate crime or discrimination.

Again in my opinion ( which is an unpopular one, but hey, never been one to follow the crowd), the people who seem hung up on the nitty-gritty of it all, are the do-gooders who have never in their lives experienced what it's like to live with/ through whatever it is, or the people who are really bent out of shape, are bitter with their lot they have in life and the cards they have been dealt and all they want to do is take it out on the world as it owes them because it's unfair and they want to watch the world burn.

To be honest, if you want my opinion, ( which you probably don’t, but you're getting it anyway),  the current Social Economic Status and Political Climate of the country is not helping this either. Fingers are being pointed, lines being drawn in the sand regarding benefit fraud, the rise of people claiming PIP and sickness related help by the policymakers as they look for a scapegoat for their misspending and backhanders. Basically, the politicians need someone the people can point their pitchforks at and someone to blame other than who it really is that is causing the issues.

To me, it seems that there is a bigger divide than ever. Terms such as “inspiration porn”, people getting bent out of shape because we use the wrong terminology that some think tank has now decided is the PC way of saying something, instead of what was acceptable a couple of days ago, these aren’t the important issues we should be concentrating on.

Don’t get me wrong am grateful for all the people who fought for me to have equal rights and equal opportunities, for all those people who fought so we wouldn’t all be locked up in asylums or “special homes”, for the people who fought for my right to access services, businesses and transport the same as everyone else, but I refuse to get bent out of shape or sit in my room and cry because someone uses my story, my struggle to get through or over theirs. In fact, I hope they do! I hope I make them think “well if she can do it, so can I” For the few who do patronize with the whole well aren’t you brave, yes love I am because I put up with idiots like you, how does that song go “ fools to the left of me, jokers to the right?”

BULLYING

I thought to be a disabled child and in mainstream school was bad during the ’70s and ’80s before the Equality Act 2010 and its predecessor the disability act of 1985, but how wrong could I be?

I look at the kids who are going to school today who have anything that is different about them, not just a disability and my heart brakes. What’s worse is it is now happening in the workplace.

Instead of things being more inclusive, accepting and equal, it appears to be even more judgemental, harsh and segregated than ever. My son is Autistic and has been bullied the whole time through school, but things have steadily got worse as the years have gone on. As he has learned not to give in to his bullies, to feed their narcissistic satisfaction of reacting, they soon learned that the way to get to him was through his little sisters and touching his books and pens. This resulted in this year, him and one of his younger sisters being surrounded by 20 kids and jumped on, being beaten to the ground, hit with sticks, having stones thrown at them, their things thrown around, bags jumped on, name-calling and my son having his legs, sides , and head kicked . All this just outside the school gates, when the crowd was starting to form at 20 strong, the teacher on gate duty walked up, told them to disperse and when he got sworn at turned his back and walked away. The school's reason for this? Because he’s not insured outside the school gates and the teachers union would have kicked off if he had been injured. What happened to being a decent human being? What happened to be in that type of career because you care? If that teacher had stayed with my son and daughter, then they would not have been assaulted.

The school's solution to all of this? To separate my son, for my son to be the one removed from the class and his friends, for my son to have to get into school early so he can get into his classes before his bullies show up. For my son to have to go to a special room on his breaks and for my son to be the one who has to leave school 5 minutes before the bell in order not to get trapped in school or walking home at the same time as the people who assaulted him. The police? They could not get one witness out of the 20 children who surrounded them to give the 3 boys names up that had physically and verbally attacked my son. The police wanted to prosecute under the hate crime law, something that I believe as not yet happened to a minor in this country and the exact reason this law had been brought into effect for.

This is just one example of bullying today on our streets and in our schools, not to mention the unseen bullying that takes place every day in the workplace. Just because we are adults does not mean we are exempt.

The police seem to have their hands tied between the perpetrators having such sway over a certain sector or people or area, to people being too scared to come forward, to their own crown prosecution who won’t take a case to court unless they can guarantee a definite win and besides, don’t like prosecuting children.

Schools are just as bad. They're too scared of upsetting parents of children who are out of line, for fear of being accused of discrimination, repercussions from the law as the law seems to more and more to support the lawless. Teachers more and more are wrapped up in paperwork, red tape, and bureaucracy. What’s even worse is that more and more teaching staff seem to be just as bad as the kids that are doing it. I hear more instances every day of not just children being the bullies, but the teachers as well. What’s worse is it no longer stops at the school gates, thanks to social media platforms and the internet the bullies can no access their victims 24/7. Parents who don’t enforce the rules because they don’t see the point “as everyone is doing it/ on it” or simply they don’t care, not interested or just can’t be bothered with the aggravation of standing up to their little precious. Not only that but so many of these parents have no idea exactly what their little darlings are getting up to on or offline.

What about social media platforms? What are they doing about this epidemic? Well as much as they lawfully have to, which is nothing much. They have rules, if it’s reported and their not inundated/ lose it /or can be bothered they will send a warning message to the little darling or adult (let’s not forget that this happens to adults as well!). Who is causing the pain, they will post up the rules to be ignored by everyone and they might even go so far as to ban, for a short time anyway, the person in the wrong, just until they can make another “fake” account of course.

And what about the victim? They go on as before, feeling unsupported, lost and alone. If they are lucky they will have a supporting family or network to help get them through this, which by the way, can last for years. My son doesn’t leave the house when he’s not at school, panics about walking home, went from a boy who loved learning and wanting to go to University to someone who struggles every day with depression and hates going to school as he just wants to leave and completely has a meltdown if he is stuck in the open on his own

I thought bullying was bad when I was at school, but at least I left my bullies at the school gates, the teachers had time to care and to listen and the police did actually have power. At least when I was a child, the bullies where stilled scared of their own parents and still worried about the consequences.

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Access

“Access denied!”

That’s what it often feels like the world is saying to me when it is impossible or complicated to use buildings, services or trying to attend events.

I cannot speak for every wheelchair user or disabled person in the world, but surely I cannot be the only person who finds it frustrating in this day and age or supposed “inclusion” and equality.

Since the Equality Act 2010 services, businesses, and events should make things accessible and if it is not possible then that business should bring the service where possible to us. It’s classed as making a reasonable adjustment. There are exceptions to the rule which include listed buildings, but businesses will get around this by saying that the building is listed which stops them from putting a lift in or if there are stairs saying that they are prohibited from putting a stairlift outside due to it being listed, when the railings are either not or the stairlift will cause no damage to the building. They use loopholes in the law and building listings to great round or just flat out not make any kind of reasonable adjustments as the cost could be prohibited. However, what these businesses don’t realize is that they are losing out on a substantial amount of revenue.

If I want to go anywhere, do anything I have to do research days before, sometimes months before in order to make sure that where I want to go is accessible. How fair is that? Would you do that? Would you think that is reasonable even if all you want to do is go out for a meal with friends or take your children somewhere?

It’s never about trying to get something for nothing, and just like any minority issue, there are a few bad apples who will try and get something for nothing or special privileges and this results in the stories you see in the news and you hear people talking about. Benefit scroungers, pretending to be disabled or ill to get things or extra help, people complain about how people on disabilities or in wheelchairs are jumping queues , however, all I want is to be able to access the same things as everyone else, a point I proved recently at Showmasters London Film and Comic Convention.  One of the days we needed to early so go through the main entrance. I had not bothered to register as needing extra help or a carer as I don’t when am using my electric wheelchair, different story if I had been using my manual wheelchair to some degree as David would have to push me everywhere as I cannot self-propel. Instead, I used my electric wheelchair for the weekend, mainly because I wanted my independence.

 So when we went through the gate they automatically showed me to the carers line for extra help. When I asked if I was in the right queue as I didn’t need the extra help the guy looked surprised and told me, in that case, go through the normal queue which I was more than happy to do, much to the surprise of some of the attendees.

You see the entrance was flat, I didn’t have to self-propel and the lines were maneuverable, so no need for me to skip ahead. I did slow the line down to some degree as my electric wheelchair only goes at a very slow speed, this did annoy some people so guess am dammed if I do (get extra help and special treatment), and dammed if I don’t( and I access I like everyone else). Like I said I cannot speak for another person who has a disability or uses a wheelchair but am happy to access services, events and businesses just the same as everyone else, that’s all I want. Whether its everyday things like going out shopping or going for food, to special occasions like a night out, event or weekend away or even if I feel like treating myself or my husband wants to spoil me and we want something a bit more luxurious these are things I should be able to access without having to spend a ridiculous amount of time on research beforehand.

Transport

Using public transport as someone who is not just disabled but a wheelchair user is daunting.

Taxis, buses, trains all a potential problem, all a potential argument and all a potential nightmare.

Taxis

Now you would think using a taxi would be the easiest option, but not always. Yes there are a lot of taxis companies that now have WAV (wheelchair accessible vehicles), and the fact that in London all black cabs are not accessible (a little thing I just recently found out), but these are usually cabs with ramps that people go in via the side. The biggest problem with these is the cabs have not been lowered, the ramps are all different types and lengths and these are often than not bought off  somewhere like Amazon and therefore not the correct or safest gradient. This makes them unsafe and risks not just for the driver but the user, as the gradient is too steep/ sharp for them to be safe to use, this can result in chairs being too heavy for drivers to push up the ramp and also for them tipping over or going over the edge which is what happened with me.

Not only that but some cabs have two single ones which means that if the driver does not put them a safe distance apart could cause major issues for the person in the wheelchair.

Not only have that but a lot of ramps had no fixing points on the chairs so again not very safe.

Couple that with the fact that a lot of the taxi drivers are not trained to handle vulnerable adults or wheelchairs, unfit to do so due to medical issues are just not fit or strong enough.

That leaves us with a few vehicles that are called “Doppler’s” these are rear loading WAVs with the ramps out of the backs. Again there are still problems with these such as there not being enough room for the wheelchair and the person sitting in them resulting in legs being squished up uncomfortable against the back of the seats. Again though taxi drivers are not helpful accessing these vehicles either and see reluctant to fold down seats or clear the space.

Buses

Although most buses now have disabled spaces and lowered steps, using a bus is something made of nightmares for me. Since having to use a wheelchair, hand on heart and being honest, I have never used a bus and never will, not if I can help it.

Currently, they are heated arguments between bus drivers, people who use wheelchairs, the public and people with prams. Although the spaces are supposed to be kept for people with wheelchairs, often people will use them if they have a pram and some are seats that have to be folded up in order to become a wheelchair space. However when someone with a wheelchair is wanting to use that bus, the driver should ask the person to put the pushchair down or if it is someone sitting there, ask them to move seats or stand so that the wheelchair user can be accommodated. However, a lot of drivers will not do this due to feeling uncomfortable backlash off the people he is asking to move or in some cases threats.

This has often resulted in insults thrown at the wheelchair user, threats of violence but more than often the bus just not stopping. In the time I have been using a wheelchair I have heard horror stories both personally and in the news about some people having to let three buses go past before one has stopped and let them on, or even worse waiting in a queue only for other people in the queue step over them to get on the bus before them as if they are nothing but a piece of luggage instead of a human being waiting in line, like everyone else with a valid right to get on the bus in turn.

Trains

Trains can be hit and miss. Personally, I have had both good and not so good experiences with this both though Virgin and LNER only on the main line from Newcastle to London but have not had the dubious pleasure of using local rail transport, again from what other people have told me, it’s been a blessing that I haven’t as from what I understand it has ranged from trains not having accessible carriages, no useable toilets, no ramps or staff to help and sometimes no lifts or access to or from the stations. My bad experiences include being forgotten about and left at the end destination at Kings Cross, nearly tipping off the ramp due to people crowding and trying to rush me off for them to get on, no access to a toilet due to cases and people standing in front of the toilet and blocking corridors, cases being left near the exit as there was no room on the luggage rack.

In this day and age transport and buildings should be one of the first things that developers, architects, and designers should be looking at when it comes to being totally inclusive. An inclusive transport network would make life much easier not just for anyone in a wheelchair but for everyone.

THE DAY THE WORLD NEVER CHANGED

A lot happened since I last sat down to write anything. The idea had been to start doing news pieces still around disability and mental health issues but more generic and fun then so dark and gloomy and not always from my point of few. Unfortunately, that has not happened.

When I first started this blog it was to chart my progress on the run up to my amputations, the recovery and what happened next. It then grew into something more for me than just an online diary that people may or may not be interested in reading. It became a voice, a way to tell people and show people exactly how difficult life could be when you are disabled, but also to show others in similar situations that there is hope and to inspire people to get out there and start living their lives the best way that they can.

Now instead of finding fun light-hearted things to inspire me to write about, life keeps throwing me curve balls, so all I write about is the injustice, discrimination and exclusion people with disabilities deal with on a day to day biases.

I thought growing up in the ’70s, before things such as the equality act came into being, that the future for anyone with any kind of disability would be brighter. But let’s face it here we are in the 21^st century and hate crimes or on the rise (just the fact they had to introduce a new law to cover these things says everything), and society is far from accessible or understanding at all, if anything I would say it’s less accessible in some ways, far less understanding and tolerant (and not just about disabilities) and less accepting.

Recently my son who has ASD and Tibia Torshin and my daughter were attacked on their way home from school, simply because he is autistic. Due to not being able to get a rise from my son who was trying his best to get home, they pushed his sister’s buttons, knowing that this would upset my son, trying to encourage her to fight. When my daughter refused they knew the way to get my daughter to lose her temper was to “trigger” my son, which they did. They did this by taking his bag, taking his pens and pencils out of his top pocket and knocking and throwing around his papers. This got them the reaction they wanted and he lashed out, hitting one of the kids who were in the midst of it setting off his triggers, name calling him, hurling abuse and mimicking his walking and talking. My daughter and son ended up getting kicked to the ground and repeatedly kicked in the sides, back, legs and in my sons head.

No one has been brought to justice over this, despite threats being made the week before about my daughter getting jumped through prank phone calls, despite ongoing talks with the school due to kids and teachers attitudes and bullying and despite reporting attacks that have happened previously to my daughters because their brother is autistic to the police. The children involved closed ranks, their families closed ranks and other people who saw what happened were too scared to say anything to the police for fear of reprisals. I even got accused of playing the victim, apparently having nothing better to do and my children accused of being trouble makers.

Welcome to a snapshot of equality and inclusion for anyone with a disability in the 21^st century.

There are still so many businesses out there that do not understand what inclusion for people who have disabilities actually means. “But they make all toilets accessible now to everyone as not all disabilities are visible! “I hear you shout, and your right, but we still have people having to change their teenage child or adult on a dirty bathroom floor for the sake of extra space to put a full changing space in. “But public transport has disabled spaces!” another thing you shout at me and yes they do….but you see people won’t move out of the space if someone in a wheelchair needs to get on that bus. There has been plenty of stories in the press lately about people in wheelchairs being stranded by bus drivers, having abuse hurled at them by the other passengers for holding the bus up or even having to let 2 or 3 buses go past before they could get on one with the wheelchair space free. Now am not saying people with buggies should stop using buses, but it is my understanding (I refuse to use buses due to these exact reasons and how much anxiety it actually causes me, I would rather just not go out!), that there is one side for prams and one side for wheelchairs, if that is so then why is it not enforced if someone using a wheelchair needs to get on the bus? When I was younger (fair enough buses back then were not disabled accessible at all !!), but anyone who had a pram had to put it down and store it, just like you would if you were using a car and putting it in the boot. Half the time people are leaving the prams up and then the child is getting out and walking to a seat anyway, so wouldn’t it just make more sense to fold and store? I know the struggle of trying to manage a small child, a baby and bags of shopping whilst trying to fold and unfold a pram, but you did it, you managed, you had too.

I still get confronted every day by discrimination in various forms, even sometimes from friends and extended family (not all of them unintentional either, but that’s another blog post), and it can be disheartening, to say the least, and sometimes if your mood is not good it can lead to depressing thoughts that make you wonder why you bother and why you keep trying to be part of society let alone a productive one.

So what happened to the bright shiny future we were all promised? , the 21^st century being all inclusive for everyone, everyone would be equal, no more segregation, no more discrimination?

In my opinion, for what it’s worth ( and after all it is my blog), sometimes there are days I stop and look around and honestly think it is worse now with exclusion and inequality towards disabilities then we ever were when I was a child.

 Now there’s food for thought.

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

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.

HELP! I NEED SOME ONE- BUT It SHOULDN’T COST ME MORE

With being a below knee amputee and in a wheelchair with many other health issues, the first thing I do before going anywhere new is check the website for help, carers discounts, disabled facilities and access points.

Why?

Because unlike before where me and my husband or family could just go out somewhere if we wanted too, these days it’s like planning a military operation. I need to be prepared and find out what to expect when I get there. Is it accessible to wheelchairs? If its not then that pretty much rules it out for us, does it have disabled toilets? Is there a lift? Is everything easy to get too from a wheelchair? Will my wheelchair fit through the doors? If going on my own are the doors automatic or will I struggle to manage them? These are things that before I never had to worry about or even give a second thought to.

The other thing I look for is discount or free carers tickets. Now I know that a lot of people have took advantage of these schemes. And still do! which makes it really difficult for those like myself who need this help to be believed without jumping through hoops and I know a few people who think it’s unfair that just because am disabled I get “ preferential treatment”.

So why do I look for carers tickets or disabled discount?

Simple. If am going somewhere that the fee or ticket is for a seat reservation or the ticket price includes this then it is useless to me – I bring my own with me. If I can’t access half the event or venue or business because you have not catered for wheelchairs or people with mobility problems or half the shop/ event is on an upper level and the organisers have booked a venue that can’t or doesn’t have a lift, then why should I pay the same as people who can access that? Or what if your services or some of your services are not accessible by myself? Is it fair I pay full price and not receive the same as everyone else? Is any of that fair?

The other reason is sometimes, just sometimes I do like to go out without my husband (who is my full time carer) and go out with friends (yes, I do have a few who still bother with me and want to socialise and be seen with someone in a wheelchair and don’t mind checking places out before booking or going out.) It’s amazing how many friends and family drop you because you become disabled and an inconvenience…but that’s a blog for another day…Any way back to this blog. So what if I want to go out with a friend or own my own but need someone to go with me to help and they don’t want/like/or into what I am? Is it fair that they have to pay full price to accompany me because I need the help? Or worse again what if am paying for a carer or helper to accompany me should I have to pay twice as much as everyone their as am not only paying for my carer to accompany me but then having to pay for them into the event etc.

This is just one of the reasons why carer’s discounts and tickets are important. The other reason is if you have a family member who is your carer and they can’t work the money they get for working over a 40 hour week most of the time is less than the living wage. Is that fair?

To be honest and fair most places these days either have free or discounted tickets and /or are accessible. Examples are wheelchair spaces on trains ( as you don’t use  seat), carers tickets for showmasters for entrance but still paying full price for autographs and photo shoots, cinema card where your carer gets a free ticket. However there are still places that don’t see the need to make either the accommodations/access or the discount available. Conventions where they will not give out a carer’s ticket and if you register as a carer you cannot have photo shoots or autographs or the only other choice is to fork out over £1000 for a PA for the weekend on top of my ticket!

So let’s say you have checked the website, there is nothing saying it is accessible or (this ones my fav) they say it is disabled friendly and you arrive to find that either half of it is not accessible/ the disabled toilets are upstairs and there Is no lift/ the whole building is accessible as long as you can get up the front steps or you either can’t see a damn thing i.e. concert or the upstairs part of the venue is only accessible by a stair lift and once up there is no room for your wheelchair. Not to mention how do you get your wheelchair up there any way if you are on your own or even better, if you can’t stand up, have no legs but can’t transfer on and off the stair lift!!

So you see, in my opinion and am sure am not the only one, companies need to start really looking at how they operate and improving a few things and why:

1.    Free or discounted tickets, we shouldn’t be charged twice to get half the show or event or get the same benefits that others get.

2.    If you are saying you are disabled friendly then check that you actually are, think about how it would affect you if you were in a wheelchair and what would help

3.    For events and shows make sure as much as you can that it is accessible to everyone that includes people in wheelchairs, with other disabilities and people with prams. I get that it is not always possible or that the venue or building is listed or there is another good reason why they can’t be disabled access or lifts, but try to limit the effect it will have on the person’s enjoyment. Have a special viewing area, have staff available to help etc.

4.    Put information up on your website. I am pretty sure I can’t be the only one who has to pre plan everywhere I go.

5.    Get an expert in to do a full review of the business, event or venue. It’s one thing to say you understand how certain things will effect someone, but unless you have actually experienced it you don’t.

Finally never underestimate how it can make someone who is disabled or who is in a wheelchair feel when they can’t access something and they have to ask for assistance because it is not available and they are looked down on with pity and told “am sorry, we can’t accommodate wheelchairs “or you try to compromise and it becomes a farce and the disabled persons dignity has been shot to ribbons or they are made to feel that they are an inconvenience or their business is not wanted.

My favourite pastime is going in shops and trying to get through the displays, or look at clothes or even navigate to the till to end up knocking things on the floor or looking like a rolling clothes rack! Even better is when the staff ignore you because they haven’t been trained how to handle these things, stare at you and not offer help, walk away or tut. Great way to make sure I won’t shop there again.

So business owners and event organisers we need the help and discounts because you may not be aware but you are losing a lot of potential customers and revenue. To the moaners and the “it’s not fair” people would you put up with this kind of treatment? Would you pay more for less and be happy about it? I think not.

Discrimination I tick all the boxes aren’t I lucky?

I have often heard the word “discrimination” being bandied about, a lot, in the last ten to fifteen years. I never saw myself as being discriminated against though. Not when I was a child and I had to wear calipers, not as a young adult who had to wear surgical boots. It wasn’t until my last amputation which has ended up with me in a wheelchair due to other health issues, have I felt discriminated against.

Employers discriminate against me, travel companies, friends, strangers, hotels, events, venues, I could go on, and hell even inanimate objects discriminate me!

This is not just because am an amputee but because am in a wheelchair. In fact I seem to tick all the boxes when it comes to people to shame, hate or discriminate against. I am disabled I have no legs and am in a wheelchair, this means am lazy, scrounger, pulling a fast one, unable to hold a conversation, understand what is being said to me or indeed hear ! God forbid I have feelings, like sex, (yes I have been asked that) have romantic intentions, enjoy compliments (other than a pat on the head and a “good girl”, I sometimes feel like either panting and whining like a dog at this point or wheel myself over to a window and start licking it), let’s not forget the looks which are a mix of horror, morbid fascination and surprise when people find out that I am a wife, mother,

business woman running her own company or studying for a degree.

Then you need to add the weight. I must eat everything in sight, it’s my fault am this big, I have let myself go, am disgusting, no one could want to be with me, how can I be married or have children being this old. Now I see this kind of fat shaming all over the place. The latest being a picture going around on the internet of a girl dressed as Harley Quinn with the caption “she must have ate the squad” https://www.facebook.com/Deadpoolisasavage/?hc_ref=SEARCH Mate you’re a dick!! And while am at it https://www.facebook.com/keith.harris.3154284 you are a dick as well. What if we got hundreds of people to comment on a photo, a REAL photo of you and you had a big nose or spots or wore glasses or had freckles. Would you like to have this picture put around the internet with some derogatory comment so that anyone and everyone can have a pop at insulting you or discussing your size and whether or not you should or should not be cosplaying a character? Do people actually have any idea how this makes a person feel?Yes am calling them out on social media, whats good for goose is good for gander so they say. so if it is acceptable to fat shame some on on Facebook then it is acceptable to shame some one for being a dick. I myself am a lot bigger than the person they are insulting and I sometimes cosplay.

It can take a lot of courage and confidence to do some cosplays and I have in the past let my size and my disability dictate my costumes…no more. My weight is not from eating too much, it’s down to the amputation, not being mobile enough or being able to exercise the way I used to, medication am on that causes weight gain, and have six beautiful, highly intelligent children, IBS, Arthritis and Fibromyalgia. So no not pizza, or sweets, although am partial to crisps – but only salt and vinegar though.

Finally add my age. I am past…. Well… Pretty much everything according some people. Having fun, flirting, University, cosplaying, going to events, being a nerd just to name a few. Oh and we can’t forget the best one, the fact I have six kids. Obviously I only had them to scrounge off the tax payer and the state, because, you know I have NEVER EVER worked…yea so the last 31 years must have all been a dream then? Going to work with plasters on after major surgery to my feet, back at work three month after a double below knee amputation, signing on at the dole to look for work whilst waiting for a fitting for new legs, going to interviews with my stump boards on and no legs….I could go on but what’s the point.

Now if you add all of this together, you end up being treat like shit, ignored and feeling inside that you are unattractive, unappealing, waste of space and a sub human, non-sexualized as you don’t count.  

You are left wondering why you bother trying to live your life like everyone else or try to enjoy what others do. You give up trying to make an effort with your hair, makeup or clothes – why should you? No one cares, no one notices you are still treat less than anyone else who puts in less effort.  You are left wondering “ should I starve myself to try and force my body to lose weight? “ or “ who cares, why should I care what I eat any more instead of restricting myself and being good – sod it – am going to stuff my face, makes no difference any way does it? Still going to be seen and treat the same way.

You’re not seen as a person or a women you feel like you are seen as nothing more than a lump in a wheelchair, an inconvenience, someone to either feel sorry for or to ignore because you don’t know what to say are how to react ( for future reference, the same as you do to anybody else who isn’t in a chair !), hey I get it, who the hell would want to be reminded just how fragile life is, that this is something that could happen to anyone at any time on any day. No one wants that shit rubbed in their face now do they.

There are a lot of people banging on about equality in recognising disabilities as not all are visible. I get this, I really do people need to understand that the person using the blue badge may look perfectly healthy but they could just be having a good day, or have some health issue you are not aware about, so it is unfair to say they do not deserve that blue badge and parking space. But I often wonder if it’s not easier having an invisible illness or disability? No one knows unless you tell them. Until that point, or even maybe after that point as well with it not being visible and in their faces, people treat you no different. You’re a woman / man, attractive, a sexual being who likes compliments and being flirted with who is capable and people wouldn’t be surprised if you went to university or got married, had a job or started your own business.

You see, am so used to this crap that most days I can ignore it, but there are days I cannot. This weekend whilst working I could not. In your personal life being treat like that is bad enough, but when it is in your professional life. When you are looked down on and treat differently to all the other professionals who are there for the same reason just because you are in a wheelchair, with no legs. When, for the same reasons, you are blocked from interviews that have already been arranged, that you are made to feel that your business isn’t good enough, big enough or the people you write for are not important enough, that’s bad….real bad.