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