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.