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.

INSPIRATION

So I have read a lot lately about people with disabilities being other people’s inspiration.  However, this seems to be getting a lot of disabled peoples backs up. There are lots of comments along the lines of how degrading it is, how we are inspiring to others by just living our lives or patronizing it is to be told how “inspiring” they are.

Well for what it’s worth, here is my opinion on it.

I feel quite good about being some ones inspiration to be honest. If what I manage to do can help someone else, motivate them to achieve something or just to keep going. Then good. Am glad. Able bodied or not, I am happy if I guilt you into not complaining or getting up off your arse to do something. I feel elated and ecstatic if I can make just one person say “if she can do it then so can I “.

Disabilities come in different forms, some we are born with and some happen due to accidents and illness, but how ever or whatever has happened to us, it changes our lives in so many ways. I am not afraid to admit that even though I was born with a disability, unless it involved standing for long periods or walking a distance, I never really saw myself as disabled as it did not interfere with my day to day life (unless you count not being able to wear shoes from a shoe shop as my shoes had to be made by the hospital for me).

Since the last amputation however, I now consider myself disabled, as not only does it impact on my day to day living it has a major impact in all areas of my life and everything and anything I want to do. I do struggle to do things like walk around the house, make a cuppa tea, cook a meal, showering, stairs are a complete right off, nights out, shopping, hell getting into and around some shops and premises can be an Olympic sport in itself!

So, yes, if me managing to live my life, getting through the day and doing normal day to day things without help, if holding down a job or gaining a university degree when the odds are stacked against me, which makes things more difficult to do what other people take for granted, helps other people who are disabled to believe in themselves or someone who is not disabled feel more motivated to do something then that makes me happy.

DISABLED TRAVEL - THE FINAL FRONTIER

This year’s LFCC was held at the Olympia Exhibition Centre Kensington in London. The Psych Twins / Amputee diaries were lucky enough to be invited down to review the event over the three days, as well as the opportunity to interview guests, cosplayers and attendees.

Showmasters, who organise these events all over the UK and now in Germany and Amsterdam, class the summer convention as their showcase piece, with some of the biggest names in Film, TV and Comic book genre attending.

We wanted to know how this worked for people wishing to attend who had mobility issues, disabilities, mental health issues or issues such as ASD, ADHD, Anxiety or panic attacks. Previously we have reviewed these conventions held at Newcastle and Glasgow. Although Showmasters are not responsible for the facilities that each venue they use provide, we feel that these things are important to take on board when organising events such as these, especially something as huge as the summer LFCC.

I am in a wheelchair full time with very limited ability to get out of the chair and walk and unable to self-propel. So it was me and my husband who went down to review the event.

We travelled down by train on the Virgin East Coast line from Newcastle central station to London’s king cross. This was my first time using a train for this type of journey since having my amputation and being in the wheelchair full time, so I was very apprehensive and nervous about this journey and how it would work.

According to Virgin it should be pretty straight forward to book passenger assistance for travelling as well as discount being available. After ringing to find out what the discounts where, and being passed around as no one seemed to know what I was on about I spoke to one customer service representative who was extremely rude, who even after being told I needed to stay in the wheelchair and their website offered discount for that, got nasty wanting to know what my disability was and telling me I was wrong. After referring her to the company website, she got loud telling me I did not need to read out the full page, passing me onto someone who deals with the website. I am pleased to say that this person was more than helpful sorting everything out and finally managed to get the tickets booked and passenger assistance booked for the journey.

Arrived at the station in plenty of time as requested and reported to the Virgin customer help desk. Shortly before the train pulled in a very polite gentleman arrived and pushed myself whilst my husband dealt with the luggage across to the platform our train arrived on, up to the carriage. He then got a ramp to put in the door way and pushed me onto the train wheeling me to my designated wheelchair spot in first class. We were assured that they would ring ahead so when we arrived at Kings Cross they would be someone to assist us off the train and to our car we had booked. The carriage they put us on was wide enough for the wheelchair to fit through the doors and access to a wheelchair accessible toilet. As some carriages have different dimensions, this is something that is taken care of at booking to make sure the journey you have booked is suitable for the dimensions of your wheelchair. After a very smooth and uneventful journey, we arrived at King’s cross station and no one there to meet us. After waiting for nearly ten minutes on a completely empty train, my husband had to go and physically get help to get me off via a ramp. This was done but we were then dumped on the platform and left with a case, two bags and me in the wheelchair to manage off the platform and out of the station to the car. The return journey was just as complicated. Although we had access to the first class lounge at Kings Cross which offered free charging stations, soft drinks, hot drinks and snacks and someone came to collect us in plenty of time there was still issues. Upon arriving at the platform and being wheeled up the ramp on to the train, it soon became apparent that the carriage was not big enough for my wheelchair. There was no turning space and the wheelchair did not fit through the automatic door at all. The representative for Virgin had no idea what to do, so I had to stand from my wheelchair and in quite a bit of pain manoeuvre into the carriage so my husband could fold the chair to get it through the door and into the wheelchair space. However due to the fact of the aisle not being big enough and the chair fitting through the door nor was there a accessible toilet on the carriage, I had to spend a three and a half hour journey with no toilet break.

The company we used was Addison Lee which you could very easily download their app on to your phone or access it by tablet, pc or laptop to pre book journeys. The website was very easy to use and once you entered all the journey details even give you a price for the journey before you booked! The driver we had was very polite and friendly with no issues on using the car they sent.

We were staying at the Hilton Olympia in Kensington, which was only five minutes by foot away from the exhibition centre which made it the ideal accommodation. Once checked in we were told that the original room we had booked had steps leading to it, which was not something mentioned on their website. The staff member checked for other rooms available that would be accessible as again there was no option to book an accessible room via the site using the HH honours system, ( this gives you preferential rates and better deals when booking on line and is free to sign up to), but there was an option to list any requirements that you might have. There was nothing with an accessible bathroom or wider doors so we opted for a normal room minus the stairs. So after being  given our room key we went to put our luggage way before heading to the restaurant for tea, but on arrival at the room found out that it was not easy to move around with the wheelchair even though we had booked a king executive room. David went and spoke to one of the staff members who very kindly upgraded our room to a suite to give us the extra space for the chair, but again this was not an accessible bathroom or wider doors.

The restaurant had a specific lift to the restaurant which was big enough for the wheelchair and two other people at a push. There was an ample size disabled toilet and the restaurant was very spacious and the tables easy to get to and reach.

The Olympia Exhibition centre is a huge, ornate, beautiful building on Hammersmith road and easy to get to via road or tube. They have a few disabled entrances to the building, the lifts are manned and internally there are a lot of lifts to get between the floors if you cannot use the stairs for whatever reason. There were plenty of disabled toilets, which included baby changing facilities but no adult changing facilities if someone needed personal care. However these where well sign posted and the space was amazing. The Olympia sets out the spacing of all exhibitors and traders at the various shows it hosts so this means that there is plenty of room to get around the venue if you are in a wheelchair or with a pram, even on a busy day and each event can book out different floors and sections of the building depending on how much space they require or want. This includes any side rooms or conference rooms that where on those floors that where hired by the event. It did occur to me if this was something that maybe Showmasters could have adapted in some way into an adult changing area for personal care needs.

The Friday was very quiet which meant there was lots of space and made it very comfortable to get around and easy to access all the traders, autograph queues and photo shoots. Once again for London they had out done themselves with stars such as Jeremy Renner better known as Hawkeye from the Avenger movies, Rutger Hauer from Blade Runner, Mad Mikkelsen from the new Marvel film Dr Strange and Hannibal from the TV show of the same name, just to name a few, not to mention cast from the popular TV show Game of Thrones, various power rangers and Wrestlers from the world of WWE. Access on the Friday was very confusing as no one seemed to know where they were supposed to be. Security were unaware of where desks were or where to collect extra help passes from, there were other members of the public trying to find out where to collect gold passes and diamond passes from and the staff did not know. I actually had to give one team of security staff my print out of the map of the event, which turned out to be of no use as exhibits had not turned up or things had to be moved.

 We ended up spending the first twenty minutes trying to find which entrance to access the building, which may not seem like a huge deal, but when you take into account how many people are rushing to get virtual queue tickets for some of the bigger names, the lower the batch number the best chance you have of fitting more autographs/photo shoots in that day especially if you are not down for the full duration. Also if you have a higher batch number there is a chance that you will not get to see that star as they may need to leave early, which is what happened to us on the Saturday.

We then spent another half hour trying to find out where to collect the extra assistance wristbands and walked the length and breadth of the downstairs of the exhibition hall. Finally we found a pit boss who issued us with extra assistance band and carer’s band but did not ask for any paper work as proof.  Speaking to other families who were in attendance over the weekend, both with and without extra help assistance, it became apparent that this was a common issue, with one family whose daughter suffered with MS having to also walk the length and breadth of the hall to find where to collect the extra help bands from. Not everyone who was there or who needed extra assistance where aware that help was available or that there was a free carer’s ticket available upon sending proof into the extra help team.  Although there was plenty of space so people could sit on the floor, there was no seating area for anyone who may have difficulty getting on or off the floor, nor was there an offshoot or separate room where any one suffering an anxiety or panic attack or a sensory overload could go that was quiet and cool so they could calm down.

Another great thing about the venue was the fact that there were plenty of places to grab something to eat, but like most venues of this type it was overpriced for what you got at £5 for a sandwich or £4.50 for two cans of coke. Although all places to eat where accessible to myself.

If you have the extra assistance wrist band and have paid for photo ops or wanted autographs then help was available to do this so you did not have to wait too long. Although some staff in the blue t shirts who were volunteers and not showmasters staff, seemed confused regarding what you could or could not be helped with. With regards to the photo ops, staff are meant to feed you into the queue with the first batch so there was no waiting and with the autographs if the queue was too long then provide you with a virtual queue ticket, which would allow you to return later and be added to the end of the queue, which should mean that you wait no longer than five minutes. Personally, I experienced no issues with gaining access to the photo queues or autographs, although it meant going to the pit boss to clarify what I was to do or where to wait and as stated earlier the blue shirts were unsure or just told you no,   as there seemed to be no queuing area for any one going in on an extra assistance band. There was only one occasion over the entire three days where I was moved to the front of the que upon returning or told by a blue shirt that they were not sure what help was available or what they had to do, claiming they had not been given training for that particular issue. Funny enough something that some of the security were saying as well.

Interviewing some of the amazing Cosplayers that were attending the event the general consensus was MCM London was better, especially when it came to cosplayers attending and being looked after, but in my opinion not regarding accessibility to guests or photo ops. Showmasters might not have it right, but they have at least gone some way towards making it better.  Most people we talked to said that compared to the is

sues that they had last year with heat, overcrowding and bad organising, this year was a big improvement, but still have a way to go. The YLAC area was easy to access, once you could navigate which lift took you where as the signage was not clear. The comic book alley, props, gaming area and retro gaming area where all accessible to someone in a wheelchair and never too busy and over all a lot cooler!  Speaking to the people who were crewing the props such as the Iron Throne etc all said that if someone was unable to get out of the wheelchair to access those for a photo shoot they would work around it which I was very impressed with.

The Saturday was mayhem. It was very intimidating being in wheelchair and even though I do not suffer from claustrophobia or personal space issues, I could feel myself panicking and feeling out of my comfort zone, with people not paying attention, stepping over or falling into you and walking in front of the chair. Because of how busy it was on the Saturday people sitting on the floor with their legs outstretched, especially in narrow walkways upstairs where they had erected temp walls for photo shoots to take place made it even more difficult to get round and in my opinion a danger and accident waiting to happen.

The staff although frazzled on the Saturday, I thought handled themselves very well. Although queues ended up merging and people didn’t seem to know where they were supposed to be queuing, which was the beginning of one queue and the end of another or for what star, they did the best they could to deal with any issues that came about or answer any questions that you had.

Sunday was a mixture between the two, busy but not to the point of not being able to move and the autograph queues were a lot easier to navigate and access as well. Both staff, attendees and stars seemed a lot more relaxed. With a majority of the cosplayers being there on a Saturday and not many around on the Friday, there was still plenty kicking around on the Sunday for photos. Most people we spoke to on the Sunday had just came down for that specific day with it being a much calmer day then the Saturday but not as quiet as the Friday and all the A listers still being there as well. By the late afternoon on the Sunday most of the traders where offering discounts on stock hoping to reduce the amount of stock that had to be packed back up and taken home.

So overall thoughts? Well from a disabled point of view help was offered once you could find the right person or indeed anyone to ask due to the crowds swarming around. Sometimes though this meant grabbing some ones attention or just having to wait patiently. Personally I would recommend plenty of rest in-between shoots and if viable taking a break from the event for a short period of time to get fresh air, lie down or just to rest in general and going back later on in the day as it is a very long tiring day which just increased my mobility issues and pain control and ended up having a knock on effect for the next day. Access was good but not impressed with the lack of knowledge from staff or security staff about where to get the appropriate wrist bands from to access the extra help.  More training would be advantageous for volunteers who do not work with showmasters on a regular biases and coordination from all team members would have also been a big advantage, so that every member of staff from pit bosses, showmasters permanent staff and volunteers where all singing from the same hymn sheet so to speak.

Over all a fantastic weekend with a great atmosphere, great guests and lots to see and do. I would have found it impossible to do everything I wanted to do had I just went for a day.  Not sure and could find no information on what, if anything was available if you were attending on your own and needed assistance to get around or access anything (Rogue events for a fee can offer an assistant if needed).

 So in conclusion as long as you didn’t mind the crowds and mayhem on the Saturday, bring your own food to avoid being over charged, plenty to drink, you can keep your calm and remember the staff and stars are human too so treat them with respect and what the crew member says when dealing with his or her area is the final word, then you are in for a treat. As with all these events, it is a logistical nightmare for the organisers and nothing, no matter how much you try to control or plan these things will run 100 %. There are lots of things that would and could be incorporated into some of the other events and that I would especially like to see happen in Newcastle, including bigger and better guests.

Me before you ? Are disabled lives worth less? #liveboldly

So there has been a lot of controversy over the new film by Warner Bros “Me before you”, especially over the pond. I haven’t seen anything on the news about it but plenty over social media and not so many complaining from the UK either. Now I can’t comment on the film as I have not seen it, nor do I intend to see the film it’s a chick flick and not my thing, but I have seen the trailer and the various points made by the disabled community.

Follow the link to see a video from center for Disability Rights  https://www.facebook.com/rochestercdr/videos/10153969290727550/

I can honestly say I can see where people are coming from regarding how it portrays disabled people, it basically says one of two things from what I have seen. The first being someone who is disabled needs an abled bodied person to make their life complete and show them how to live and secondly that if you are disabled then your life is over, you’re screwed and it’s not worth continuing with. I do think that some of the comments regarding it sending a message of just kill yourself might be a bit extreme but again I can see how it would seem that way. From as far back as I remember Hollywood has always used the infirm, disabled and disfigured as victims, evil villain (apart from Denzel Washington in The Bone Collector, but that was so ridiculous in my opinion don’t get me started on that one), or a figure of ridicule, needing rescuing or /and unable to do anything for themselves, the feeble side kick. Black actors complain about being left out of the Oscars but disabled actors are left out of the film industry.

I think, for me personally, the biggest issue I have is the fact that there are so many actors out there who have a disability, but Hollywood still pick abled bodied actors to play the roles. Why? Is it as simple as big names draw people and up the coffers in box office sales? Too scared to try an unknown?  I am a member of Amputees in Hollywood and a few years ago I answered a casting call to play Gazelle in The Kingsman due to being a double knee amputee and that was the criteria they were looking for. Lo and behold they picked a perfectly healthy and fit dancer who had both her legs and green screened the running blades. Now fair enough am no stick thin, sporty type far from it,( in fact weebles wobble but don’t fall down would better describe me) but like other people before me the weight could have been lost, I could have worn the running blades and the stunts still would have been carried out using stunt doubles or green screen and wires. However this said I may not have fit the director’s image of how she would look facially or age wise. Each director/producer has an idea or image of how their characters look or sound before casting begins so we can’t just say “you must pick a disabled person to play a disabled role” it’s not that simple, but it would be nice if they looked more at disabled actors first and not just automatically count them out.

Wouldn’t it be nice to see someone who was disabled being the hero for once? Or save the day? Ones I can think of is Rear Window with Christopher Reeve and Dare Devil. Win the girl because of their charm and sex appeal not out of sympathy or compassion. When I do reviews at Film conventions, one of the reasons I try to talk to the actors is to find out how they feel about things like this in the film industry including mental health.

I hope these people that are posting it all over social media and protesting against the message the film is sending, realize that all they are doing is helping fill the film companies’ coffers. As they say in Hollywood there is no such thing as bad publicity. All this is going to drive people who otherwise would not have bothered with the film to go and see what all the fuss is about. However I cannot see the film industry or Hollywood changing the way they act any time soon just because people are protesting, personally I think they will rub their fat, greedy little hands together and pat each other on the back at a job well done and about how the critics and the protesters are lining their pockets. Well played Hollywood, Well played.

SHOWMASTERS FILM AND COMIC CONVENTIONS

SHOWMASTERS FILM AND COMIC CONVENTION MANCHESTER

21^ST – 22^ND OF MAY 2016 EVENT CITY.

Review by Darren Green photography by Annabelle Clark.

Written by Jennifer Clark

Yet again Event City played host to Showmasters Film and Comic Convention in Manchester.  We sent down two volunteers to scope the venue out, review the event and talk to the cosplayers, attendees and the guests. So off went Annabelle and Darren on the Megabus early on a Saturday morning at 6 am to spend the day at the convention.

The venue was very spacious and easy to navigate for someone in a wheelchair. There where spare wheelchairs near to the entrance of the venue along with the toilets which were very spacious and also extremely accessible. For a change at an event like this there was also plenty of room in the aisle to access vendors, making it relatively easy for wheelchair users or families with prams to move around and view the wares on display.

As usual Showmasters offer free carer tickets upon application (good idea to send a copy of a carer’s letter for proof) for their events which allows one person to access the event for free when accompanying someone who needs assistance to attend an event like this due to ill health or disability. Like other events Showmasters have ran there was no area where someone could take a break if over stimulated, over stressed due to sensory overload and no changing facilities were noticed for older children or adults who may need personal care other than the standard baby changing facilities. Also there was no indication of anywhere for someone in a wheelchair or unable to stand for long periods to obtain a slip giving them preference or return time for autographs and pictures.

This ever popular event was very busy with queues lasting all day for guest’s autographs with the line-up including Michael Biehn best known for his role as Kyle Reese in Terminator and corporal Hicks in Aliens, Ken Kirzinger from Freddy Vs Jason, Noel Clarke from Dr Who and Star Trek and Dave Prowse best known as Darth Vader in Star wars along with many others. Staff where plentiful and available at all times coming across as very calm being able to direct you to where you needed to be and how to help with any issues you might be experiencing. Everything at the event was very well signposted so easy to find and as cosplaying is becoming ever more popular Showmasters had set aside an area for people to change and store their bags and was easily accessible for any one in a wheelchair. Both Darren and Annabelle got changed at the venue into their cosplay outfit and set out to brave the  crowds to look into every nook and cranny, interview attendees cosplaying and non-cosplaying and hopefully some guests to find out what they thought of the event, cosplaying and services on offer.

So Darren managed to talk to some fellow cosplayers regarding their views on the event.

He asked what people liked the most about cosplaying and attending the event and the general consensus was the atmosphere and how friendly everyone was, meeting new people who like the same things. Darren then asked how cosplaying made them feel. Again there were mixed answers to this but feeling that they are popular and people like them, giving them the confidence to approach people and ask questions were some of the most voiced reasons. Encouragement all round from cosplayers that he spoke to on anyone who is thinking of attending a Showmasters event in or out of cosplay and for those people who have always wanted to give it a go a resounding try it. I myself have attended conventions ran by Showmasters in cosplay in my wheelchair and have felt part of one big family where you are accepted no matter what.

So With the thumbs up from the cosplayers it was the turn of the general attendees and what they thought.  There was a mixed reaction regarding Cosplayers ranging from families who attend to see the costumes and the children who look forward to coming face to face with their heroes and posing for a picture and think they add to the event to people who thought that showmasters aimed to much towards the cosplaying community and not enough in providing bigger named stars outside of London or getting comic book artists to attend.

They managed to grab two minutes with legend Dave Prowse before leaving for the long lonely ride home on the mega bus. He was asked his opinion on people cosplaying as Darth Vader and cosplaying in general, if he thought it added to the conventions, “Yes it’s great to see someone dressed as Darth Vader and it is very flattering. Makes me feel like I have achieved something if I have instigated them to cosplay as a character I have played. Cosplaying is an accepted part of these conventions and I love seeing all the different costumes people attend in and all the hard work that has gone into making them.”

So as the sun sets over another successful day for Showmasters in Manchester our two intrepid reporters get changed and wearily tread off for the bus leaving fame and their adoring fans behind them to return to real life. When asked their personal opinions of the convention, services, staff and venue it was a huge thumbs up and well worth the early start.  So still room for some tweaking here and there and work on coordination, but definitely on the right path to make these shows more accessible to everyone.

A ROSE BY ANY OTHER NAME

****WARNING IF YOU ARE OVER SENSITIVE AND VERY PC YOU MAY FIND THIS A BIT CONTROVERSIAL*******

I have seen a lot of posts by people lately regarding how to address some one who is disabled or what to say /not say to them

 To be honest I find it all a bit silly

 Am not the most Politically correct person out there but as far as am concerned calling me by my name is fine. Honestly I will even answer to "thingy" or "you" even "Fred" just try not to use Jennifer too much as when I get my full name it usual means am in trouble.

I get it, some people feel that being called "wheelchair bound" "disabled" or "handicapped" (too be honest although am not fussed I try to refrain from the last one as it seems a bit degrading). They feel that these terms and others define them or that they are being defined by their disability. I am an amputee because I have had an amputation, but that does not define who I am. Am lots of things (play nice now), am a mother, wife, daughter, student, blogger, Therapist as well. I am however bound to my wheelchair to some degree, without my wheelchair I would not get very far at all or get out so the term "wheelchair bound" is accurate as far as am concerned. Disabled to me is accurate as well there are lots of things I can not do and I am not abled bodied either.

why do people get so bent out of shape by these terms and the use of them?

I have a theory ( and no its not about bunnies! and if you get that reference high five.).

From most (not all and am by no means taring every one with the same brush here), of the articles I have read there seems to be three types of people that find this terminology offensive:

"The do gooder" - People who have never suffered any kind of disability or health concern in their life but think they have the right to voice an opinion on this subject as an expert.

"The world owes me" - People,  who for what ever reason,  have become more and more bitter over time due to their disability or illness. They feel, rightly or wrongly,what has happened/wrong  to/ with them that it is every bodies fault ( I get this to some degree, its not easy to keep a positive outlook going every single day when you feel so useless and / or limited by whats wrong and the world will not accept you for you and most activities or places are not accessible, every one has their off days). But really? The world doesn't owe you jack squat mate! Yes maybe a helping hand now and then to do things or access places.  Use what you have to your advantage, make the most of it and start living because before you know it life has just passed you by.

"My life is over or why cant this have happened  to some one else"  -  People who have ended up with an illness or becoming disabled later in life through no fault of their own. Again I understand. One minute being healthy and able to do any thing or go any where, your future looking bright and shinny and the world at your feet, to within 24 hours having all this ripped away from you. It is a hard pill to swallow. It is also a bloody hard thing to get used to and come to terms with -  fighting pain, depression, friends walking away because they don't know how to react or cope, people staring, suddenly having limits put on as to what you can do, places you can go or even things you can wear.  ( I went through all of this for nearly a year and a half then decided I had enough. Now I wear what I want, I pimp my prosthesis and rock Darth Vader on one of them, wear shoes that make people stare and generally make the world bend to me.) I understand that this takes time , but some people just never adjust, adapt and learn to live with it they are too busy lamenting what they have lost.

How about instead of trying to define what we should and should not be called or what "boxes" "abled" bodied people put disabled people in, or in fact whether or not people should or should not help us with bags or opening bloody doors for us , why don't we just agree that we are just people with a difference? What terminology is used really doesn't matter does it? not unless it is meant in a bullying, nasty, creepy kind of demoralizing way. Unless some one is deliberately putting you down you define who you are, you put the limits on yourself its not a "us" and "them" thing, or at least it shouldn't be. The government have already tried to turn society against us people do not need to be helping them to do that. The next time some one asks what you like to be called make a joke or light of it , it an only offend if you choose to let it. The next time some one offers you help be grateful and smile, the next time some one opens a door for you say thank you you ungrateful git. The barriers are there and they will never go if people start to make other people feel uncomfortable to approach or help, terrified to say anything to us or engage with us or even invite us some where in case they offend, upset or seen to discriminate.

THE FAST AND THE FURIOUS

Nearly at the end of March already, who would believe it. I still maintain that this year will be my year for things to work and the last two month has just been a practice run. Guess we will have to wait and see.
As you are aware if you have been following my blog ( and if you haven't why not? get reading now!), This year has not had the best of starts. However three month in and things may be slightly starting to improve.

Caught up with University work and came out with a first for my Academic Mentor presentation which was great and after my personal development meeting, found out that I might not be as screwed as I thought I was with moving on to the final year. Although if all these health issues and my dads issues had not had to be dealt with what kind of grades would I be clearing? So it is with extreme caution that I apply for my final year of finance for my degree. But what comes next? For most students this would entail a masters or PHD or perhaps getting a job, but what about some one with chronic health issues such as myself? What do I do?Well I guess that is the question isn't it. Like so many others out there in the same situation (OK I admit there are people out there who do take the piss), I really want to work, even if its part time. Here is the problem, even part time I know there will be more times spent off then in and looking at my health issues most employers will take one look at me and will pass me over nor have the time, money or patience to put up with it.
So that leaves working for myself, but what as, how? The Psych Twins was supposed to be the start of that the whole, if Mohammad can't get to the mountain then the mountain will come to Mohammed thing, but with out grants/funding and being able to get contracts its all pie in the sky, a great service I keep getting told, that is greatly needed, but no money to do what we want with it, pay ourselves a wage or hire others.

So where dose that leave me? Well back at the beginning, on ESA, unemployable despite all my skills and training, just take a look at my CV (go on take a look you will find it on my LinkedIn Profile), despite the outward appearance of a withered, useless body ( I sometimes see myself as a female "Jabba The Hut" ) there is a mine of pure knowledge, skill and enthusiasm just waiting to be tapped into. This then leads to the "what's it all for then?" phase. The point at which you relaise that you are of no use, not even to yourself. You need help at home, help to go into education and help to hold down a job (if you could actually get some one to give you a chance) and the government is slowly tearing that all away from you any way.
This then moves into the "isolation" phase. As some one who has numerous illnesses/ health issues, going out socially is not a thing. Even if I had any one who would offer me to go out socially there is the accessibility of the venue and how good or bad am feeling on the day. ( All the offers of being invited places, even by family and friends dropped off after it became apparent that to invites some one out who has to use a wheelchair 90% of the time is just to darn pesky to organize. Especially if it means that one of you have to be responsible for helping said person and good god you might have to change the venue/pub route/restaurant to make sure its accessible etc etc ...you get the picture). So if you take going to university away, I leave the house once a week with my husband...maybe to look around the shops and any drs and hospital appointments. What does that mean realistically? If am lucky I will get out once a week maybe once every two/three weeks. WOW exciting life !

This then leads into the final stage..depression. yep. What more can I say about his phase, well nothing really, its all been said before. You can't see anyway out. Nothing is going to get any better, because there is nothing you can do to make it any better. No diet, exercise regime or will power is going to change those illnesses so you can go out to work, therefore get out more socially, have money to enjoy life, get  mortgage, move up in the world etc etc. No way of being a good little citizen just like the government want you to be. So you are labeled a scrounger, a waste of space, useless and society look down on you, and the government? well they just keep taking benefits away from you making it harder and harder to function on a day to day base, telling you to "get a job" "loose weight" "exercise" "this is how to improve your life and your credit"..we know! but we can't can we no one will let us.

Money wise, am lucky my husband runs his own business which ticks along for us, so things don't effect me as much as some people I know  - disabled and non disabled. I would love to go back to work, hold down a job doing something I would enjoy, bringing home a wage and getting off benefits. I dream of getting  a mortgage and owning my own house, done out to my specification no expense spared, holiday every year never mind twice a year instead of saving for 2 year to go away for  2 weeks (meaning no treats for the kids, no weekend breaks as a couple, no date nights, no family days out, no new clothes , going no where during the summer holidays etc etc).... and yes for those out there who follow my profile on Facebook I save to go to Florida and am well aware there are people who cant afford a weekend away, I did say am lucky.......to have more of a social life with my family and  friends rather then wondering if am getting out the house for an hour or two in the next 14 days.

Who knows maybe things will turn around. Maybe funding will come in and I can finally get The Psych Twins off the ground the way I want too and make a wage that way. Maybe my health will improve and I will get a job or there is some employer out there who will let me freelance as a writer or something and come in when I can for a wage.

Maybe I will become a tv personality and be on political shows and news program or have my own show. Maybe I will become a famous author. Maybe I will get the acting offer I cant refuse because of my unique physique as an amputee. and matronly and northern..yea OK the least of the lot to come true. All I do know is that I will keep on trying, wishing and dreaming. Oh and am getting an electric wheelchair ! so bright side I get to any future Film and Comic Conventions I can play a Darlek....

......................Que Dr Who theme music.........

IS THIS THE LONGEST AND WORST JANUARY EVER?

Being an amputee one of the biggest issues I have apart from not having access to places is the weather. I wasn't steady on my feet before but now that I have what effectively feel like stilts, its a whole lot worse.

The main issues are rain ( living in the UK is 80% of the time), ice/frost and snow. Apart from the issues of the cold causing problems with the joints due to other health issues I have, this weather turns me in to a virtual recluse or risking a serious fall. Because I do not have a flexible foot or ankle and the prosthetic comes up to my knee cap, it makes balance and bending in them very difficult.
The weather since Christmas has been all over the place. High winds that caused issues with balance and asthma for me, torrential rain which meant a huge chance of slipping every time I went in doors, snow which means no outside at all, and now the media is telling us that it is all to start again with server snow due to it the UK.

As if already having a list as long as your arm with health issues isn't enough it looks like more will be added to it this year as mentioned in the last blog. I am struggling with university already and as well as missing  a second deadline now,  we have only been back a week and have already missed two days being in for lectures, with more to come due to all the appointment's I have coming my way. Dad is having money going out of his account with nothing to account for it as due to the dementia he is forgetting to pay his bills. this is going to mean more appointment's with social services ( for what good it will do).

So as well as struggling with my own demons (my depression, which is not uncommon for people with serious health issues or amputations to battle with), my health issues and university but I have my dads ill health to deal with and lack of control of pain. I can't speak for other people who are disabled but the hardest thing I  am finding at the moment is trying to do what every one else takes for granted, sometimes just keeping my head above water is a struggle. Being disabled to me means having to work harder to be "normal" like every one else. Things I used to take for granted and most of you still more then likely do, can be the biggest struggle for me.

Just getting up in the morning is a battle. Moving to sit up and get out of bed can be so painful it makes you cry. Getting ready can be a struggle so you need someone to help getting things on or off. Don't even talk to me about the shower ! The act of showering and the pressure of the water on my skin can sometimes be so painful that just having the show can set off a major fibro flare. Not to mention dropping stuff on the floor or things out of reach you just cant reach as you have no balance to do so ( weebles wobble but they dont fall down....unless you have no legs on and reach for something and go  face first into the floor ).  Then we should talk about the holding cups, forks and dropping everything, pins and needles in the hands, not being able to pick things up......the list goes on and I still push myself to attend appointments, university, sort out my dad and working on The Psych Twins. Can't wait for the new additions from the things am waiting to hear about.( thats sarcasm by the way, just in case you missed it).

These are what I suffer from at the moment :
amputee with phantom limb pains and nerve damage
Fibromyalgia
sleep aneapa
chronic fatigue syndrome
Arthritis - rheumatoid and osteo
rynalds
circulation problems
IBS
depression
and waiting on news about heart and cancer......I think thats everything, comes to something when you cant remember everything you have been labeled with.

With everything going on with me and my family, the amount of famous people who are loved by society dying, the news is full of death, disasters and the government screwing us over even more,but trying to stay positive so looking forward to what is to come this year.

The Psych Twins will be attending Walker Stalker in February to do reviews for access, Newcastle comic con reviewing March, Hero conventions in Edinburgh in April reviewing access, Asylum 16 and City of Heros 2 promoting ourselves in May, Metro unleashed promoting ourselves in June and Screen Con in Tynemouth promoting ourselves in July and as long as there are no more financial disasters the main thing am looking forward to is my  three week holiday to Florida in the USA.

so even though reading through the list of aliments I have makes me wonder how I function or even get up at all, I still have things to look forward to. Now if I could just work out how to stay upright in the snow.....

HAPPY NEW YEAR !... CAN I START AGAIN?

January is the same every year. No money , nothing to look forward to, dark nights, grey days etc etc. But people every where tend to make the same resolutions, new year new me, starting the gym, stopping smoking, going on a diet and my personal favorite, this year will be better.... well am still waiting. I have decided to put January as a trail and the New Year for me doesn't start until February,
( knowing my luck though this will persist until June or something and I sill be putting the previous 5 month as "just a trail").

As soon as the clock chimed midnight on the 31st it all went to pot.
Dad kicked off.
Stress levels through the roof
Arguments
Health issues escalated
And I ended up missing a deadline for the first time ever !

Dad was refusing his carers which resulted in more arguments between him and my sister, leading to my sister being more stressed out. On top of this he was forgetting to pay his bills becoming more and more in arrears with his electric and gas. He was refusing any form of personal care or hot food and decided to rip the telecare monitor out.

Thankfully I have managed to get his social worker to do a review of the services and he has agreed to paying his bills by direct debit which am arranging for him, the telecare has been reconnected ( although he is still refusing to wear the call button, but small steps.) and he has agreed to keep the carers for the morning and night who will help him with the porridge for breakfast and a sandwich for his supper. Still not winning on the personal care front but I am grateful for the small things at the moment. The one thing through out this that has really annoyed the hell out of me is the way that so called "care professionals" talk to the elderly, vulnerable and disabled. I noticed when she was talking it wasn't too my dad but at my dad, which I thought was horrendous and extremely disrespectful. He may have dementia but he is still a person. Whilst she was talking about him to his partner or to me it was if he wasn't in the room. His whole body language was sad, defeatist as if to say " I may as well not be here, no one listens to me". That got me thinking about how people talk to me. When am in the wheelchair, which fair enough is most of the time now, I get talked at or instead of asking me a question they ask who ever is pushing me, as if am invisible There is also a difference from when am in the wheelchair and out of it. I don't get talked at but I do get talked down to, as if because my legs are missing somehow this included my intelligence and being to understand anything. Talking to my sister the other night on the phone and she mentioned something similar. If her partner mentions that she has had a brain tumor or surgery people treat/talk to her differently .
Why?
Is this just lack of training on behalf of the professionals, or do they just become so worn down by seeing the same thing day in and day out that it is robotic and automatic? Is it just human nature to look down on the infirm and the disabled, see them some how as inferior, less then human. Is it a simple case that evolution dictates that we over look these people or try less as there is no gain, the genetics are faulty therefore we are over looked? ( see, told you I was studying psychology).

The cardiologist went well I thought. Heart trace was normal and no sign of a murmur and he is pretty certain that it is nothing linked to my talipes, ( people born with talipes can sometimes also have muscle issues in their legs, hip issues and/ or heart defects/issues). However it could be something called egtopic heartbeats or A.F ( arterial fibrillation?). So to rule anything out I have to have three tests carried out. One is a heart monitor for 72 hours, a echo gram of the heart and a ultrasound. So its going to be a few month of waiting before we get any final results. This of course means more stress and worry.( I do sometimes wonder if this might be payback for me labeling the heart the opposite way round during my physiology exam two year ago?).

Got the pain clinic appointment coming up in a few month, but to be honest do not see the point in going. Pain clinics tend to look at alternative ways of dealing with the pain to be used in conjunction or instead of pain killers. Tried them all before, didn't work then will not work now. So its back to the docs to look at upping the meds. Can't wait to see what that leads to !

Then to top things off, just as I thought nothing else could be thrown at me this year never mind this month I received a very unexpected letter. I have to go to the Northern Centre for Cancer to have genetic screening done. well, blow me down, ( trust me I said worse then that but am trying to keep this a 12 PA). So this will mean months of tests and waiting to see what the out come is. All of this just in time to return to university after the Christmas holidays for exams and deadlines. Not sure how this is going to impact on things or if I will even complete the degree .

Watch this space!

( I swear I should write a bloody book ! only problem is it would be put in the fiction section as no one would believe it. Soap operas have more realistic story lines then my life).