Sunday, 13 September 2015

NEW START - NEW ACADEMIC YEAR

Back to University next week.  Getting broke in gently as there is only the welcome back meeting on Tuesday for an hour, but there is a catch up with the Thinking Ahead group. This is the group I joined last year that raise funds and awareness for Student Minds, also the reason I shaved my head if you remember. The only thing am not looking forward to is breaking in a new support worker who will help me get around Uni. Hoping she is not set in her ways or used to patronizing disabled people or the next year will be explosive !

Then its back to nose to the grindstone the week after as we get into full swing with our second year on campus. Still plenty of other things to keep me busy as well such as marketing and selling the Halloween Masquerade Ball tickets for the 31st of October https://www.facebook.com/events/417935758373799/
On top of this there is the decorations to order and the itinerary to sort out of who is responsible for what on the night. All of this on top of still having to finish up my CBT diploma I started half way through the holidays and being invited down to Merseyside to be a director with another charity and help them with their fundraising. Add to this that I have also applied for press passes for The Amputee Diaries to various comic cons and events, including in the USA, means that am going to be a very busy girl !

I am hoping to do more reviews for people who have disability's as I strongly believe that being disabled should not stop you from living life to the full. More venues and events are now aware that these things need to cater to every one, but don't always see the world from our perspective. They may think they have covered every aspect of the event for disabled people when in fact they are missing things, sometimes little things, sometimes HUGE bloody things and that is where my reviews come in. Not only to help people but also planners and businesses to address these problems, be more inclusive and in fact increase their revenue stream, audience and fan base. In fact since losing my mobility pretty much, my health getting worse, nearly dying during childbirth with Toyah, my dad being diagnosed with dementia and my mam dying, I have came to realize that life is just too short to worry about what people think and waiting for the right time to do something. Hence cosplaying and all the trips to Disney.

We are still waiting for social services to arrange visiting my dad to assess him for help due to recently being diagnosed with dementia. Since the diagnoses we have pretty much been told that we will have to fight for every scrap of help we get. Typical. It is so frustrating being stuck in this chair sometimes, feeling useless, watching people you care about needing assistance and help and knowing that there is absolutely nothing you can do to help and feeling that  you are no use at all.

This got me thinking about being a parent and disabled/wheelchair user. The issues it brings I think are unique, something most people will never experience. The first thing you notice is how much you have to adapt certain things to make them work. The next is how much you actually relay on your children for help. Basic things such as house work, doing the washing, cooking sometimes getting clothes on or off depending on if you are having a flare up at the time. My mind though I can keep active which am thankful for. Hence the reason for the charity and uni I guess.

 I am no longer interested in possessing things, but in having experiences. The bigger the better. Life does not have to be over just because you have suffered a tragedy in your life. Nor does it have to be over because of your age, after all its just a number, just like your tragedy, disability it does not define who you are.
People often forget to stop and take in the beauty around them, see the fun in most all situations and live life every day as if it is your last. Take chances, have fun, don't be scared to make a fool of your self ( hell I do that all the time that I don't even need to practice it any more ). But then again it has taken numerous tragedy's in my life and 46 years on this planet for me to do these things. Its not something that comes naturally to us but needs to be learnt, just like every thing else. There is no book on this, you can read as many books around this subject as you like but it will never enable you to do these things or be this way. That, am afraid, is down to you and you alone. In fact I think the more gadgets and tech we invent to make our life easier just clutters it and makes it busier. In fact I think people or trying to use so much tech and gadgets these days to free up time that they have less time then they did before !

Sometimes I think it would be fun to write a book based on my life, the husband thinks I should. But honestly I don't think any one would buy it as it would seem so fantastical and unbelievable. The things I have been through, the things I have done and seen. Hell plot lines of soaps  or more believable then my life some times. This summer alone I have :
Started a charity
organised and event
got donations for prizes
received press passes for a film and comic con
interviewed Chris Judge aka Tel'q from Stargate
interviewed Gareth Lloyd Davis aka Yanto from Torchwood
interviewed Doug"Hacksaw" Duggan from the WWF
Spoke to Michael Bien from Terminator
Spoke to Robert Enguland from Nightmare on Elm Street
Traveled to Glasgow
Done a diploma in CBT
bought a new car
been in a local newspaper
soon to be speaking at the local college to new Psychology students starting the extended degree course
went to a VIP event
had business cards done
had a shopping trip away
applied to be a zombie
got involved as a possible director for another charity
reunited with my dad and sister........and that's in 4 months imagine what I have done over the last 46 years! Some highlights are - insulted Eric Clapton (in my defense it was an accident), lived in a hotel suite for a month, been put before Westlife, drank with Bobby Robson, did a screen test for Matthew Vaughn for the film Kingsman.........

See life is not over, its only over if you let it be.

People look at me and see an overweight, middle aged women who is in a wheelchair with no legs. If they only knew......:)

(If anything in this blog or the other blogs have effected you and you would like to talk to some one please feel free to get in touch.)

Friday, 4 September 2015

FROM THE HIGHLIFE TO THE LOWS IN LIFE AS WELL AS THE GRITTY BITS.


And the world moves on…

 

Just had some devastating news regarding my dad this week. He has been diagnosed with mixed dementia, which is both dementia and Alzheimer’s disease. It’s aggressive and already at the stage of forgetting who we are, to eat, take medication, change his clothes etc, not to mention the mood swings and how he can sometimes be verbally abusive to my sister.  The doctor at the specialist clinic was so off handed about the whole thing when giving us the diagnosis and the way he spoke to my dad was if he was rubbish or not even there. He offered no support, medication to help with his anxiety and nowhere to turn to.

This got me thinking about how I was perceived by these people. The feeling after seeing this doctor at the specialist clinic, who when I started asking questions regarding his brain scan, demanded to know who I was and if I was in the medical profession and how did I know this information,  was very much that I had achieved or done very little because I was in a wheelchair and disabled. By the look on his face it was obvious that he had wrote me off being in a wheelchair. The look of amazement and shock on his face when I told him I was at University studying psychology was priceless! Needless to say his attitude towards me changed but not towards my dad.

The same thing happened with his GP.  Even though I was the one asking the questions and talking to him his whole body was turned away from me and all answers where directed to my sister and husband. This is extremely annoying to say the least. It also seemed to infuriate him that I could use the same language has him. This resulted in him picking up on any mistake I made about dementia or the brain even though I told him I did not know anywhere near enough information to understand what was going on completely, but that doesn’t mean I can’t make educated comments or guesses.

At this point I also started to wonder if other people with disabilities got treat the same way from so called “caring “professionals? I can never remember being treat like this before the amputations or pre wheelchair use. But this brings me to other small things that I have noticed but hasn’t really hit home before now. Such as automatic doors into places. You have them working or always open but have you noticed that if you have a pram or someone in a wheelchair you are the one waiting for other people to finish using it and wait for them to let you through? There can be 4 or 5 other doors for people who are able and capable to go through, but no, they would rather que, tut and moan and wait for you to get through, force their way through WHILST you are trying to go through, my personal favourite…quickly jump in front of you or step over you to go through ahead of you instead of thinking to themselves “ wheelchair/ pram coming through I will just use my hands and arms to push another door open to go through. What is even funnier with this is the look they give you as you are waiting on them to finish and let you through, it’s as if you are shit on their shoe or an inconvenience to their lives somehow, that’s if they can even be bothered to look at you. Some prefer to pretend they are not ill mannered or ignorant by looking straight ahead and not even acknowledge you are there.

Then there are the problem solvers. They can be a stranger, care professional, friend or even a family member. The ones who will try to fix everything when all you want is for them to listen, believe you when you say you have tried and maybe understand a little.

 Let’s face it, no one will truly understand what it is like to live with your disability on a daily basis or what you go through just to do something that before, or other people take for granted. I wouldn’t wish that on any one, but trust us, if we say we have thought every which way to try and do something or we tell you we can’t do something or something won’t work, or even if it’s a case of we have a hang up about doing something so we don’t want to do it, please, believe us, its true. Although you mean well and are only trying to help by finding a solution you’re not. All it does is infuriates us (well me anyway), makes me feel useless and as if am trying to get out of whatever “it” is. It also makes us (and again by us I mean me) feel like more of a nuisance and/or failure when we do try your “fix” to the problem, even though we have told you it won’t work, and fail, because guess what?....it wasn’t going to work like we said to start with.

My husband is a fixer and God love him, he really try’s to work outside the box so I can experience and do what I want to do. Sometimes he comes up with things I have not even thought of trying or considered, which is great! But other times he goes on and on trying to find a solution even when we have exhausted everything logical and inventive that won’t humiliate me or end up hurting or endangering my life. It just he is so focused on trying to find a solution for me because he wants me to be happy, that he doesn’t see when it stops being helpful and becomes painful or upsetting because he is going on and on about it. At this point it just feels that it is being hammered home over and over what I can’t do and am useless.

Until just last week he didn’t understand why it would upset me after a while of looking for a way around something. When I explained it to him he told me that he knew it upset me when I couldn’t do stuff I wanted with the family and all he wanted to do was make it so I didn’t miss out. What he hadn’t realised is how much it could potentially upset me when there was just no solution to be found and he kept trying to fix it.

Maybe it’s just me. It wouldn’t surprise me really. I have always liked to be different.

Sunday, 23 August 2015

LIGHTS.,CAMERA, ACTION - OR IN OTHER WORDS FILM AND COMIC CON GLASGOW 2015

So it was amazing news two weeks ago when we found out that we had been allocated press passes to film and comic con Glasgow. This was a great opportunity for me to find out exactly what differences there where between Newcastle and another venue Showmasters used, if they had made changes to how the event dealt with disabled attendees and family’s and a great chance to speak to the guests who were attending to find out their thoughts on the event, cosplaying etc and a great chance to review the good and bad and downright ugly of being disabled and travelling and attending a convention.
So we packed a bag and off we went ready to take on everything and anything that would be thrown at us in the aid of the amputee diaries and The Psych Twins.

We travelled by car up to Glasgow on the Friday tea time. Over all it was a 4 hour journey including a slight misdirection through Glasgow and stopping off for a break. This was where the first problem was encountered. We stopped at the Welcome Break services at Gretna Green. There was plenty of disabled parking spaces right at the front near to the entrance to the services. Access was good with automatic doors and all shops where accessible. However the only disabled and baby changing toilet in the services was out of order, with no idea of how long it would be out of order for.
 Now although difficult for me to walk any distance, it was a necessary evil unless I wanted an accident to happen. For people who cannot get out of their wheelchairs or a family with a special needs child or even a baby to change, this was not acceptable. There was no other alternative to this situation unless you wanted to risk however long till he next service station. Travelling back on the Saturday night we stopped at the same services and guess what? That’s right the disabled toilets where still out of order. Obviously the engineer they had called was on a go slow or didn’t do weekends!

We arrived at the Travelodge at Breahead Glasgow around 9pm. Situation was excellent as the shopping centre where the event was being held was within a 7 – 10 minute walking distance. The hotel had plenty of parking spaces and right next to the entrance. Doors where automatic so no struggling trying to open doors and the staff where very pleasant and helpful. The whole area of reception, bar and cafĂ© was accessible and clean although basic, but you get what you pay for. I had requested a disabled room and included breakfast. The room allocation was excellent down stairs not that far from reception. Only issue was if you were travelling on your own then the doors are heavy to get through to the corridor where your room is situated and your room key card has to be used to open them. This would be something you would not be able to do on your own unless you are a lot more flexible and resourceful then me, which is a possibility, otherwise you will need to ask a member of staff to help.
Entrance into the room was wide enough for my wheelchair which is wider then a normal chair.  The room was very spacious with room for me to manoeuvre in the wheelchair. Everything in the room was accessible from the wheelchair apart from the shelf above the clothes rail. The bed was two singles pushed together but very comfortable with a call button on the head board.
Again the room was sparse but as I said earlier you get what you pay for. The bathroom was huge and very spacious, lots of grab rails, lowered sink and mirror etc. but was very disappointed in the disabled shower, never mind how dangerous it was!
The controls where accessible but no shelf to put any toiletries on such as shampoo and shower gel so reaching for them would be dangerous ( actually impossible for me to do). The fold down seat was way too small and it was not possible to sit on fully, so was more of a perching stool. Well this caused an enormous amount of problems for me! Having to remove both of my legs to enable me to shower, this left me feeling as if I was falling forward. You needed your legs to brace yourself when sitting down. So for someone with no legs, weak lower limbs or unable to use them at all would have major issues using this shower without having an accident! In fact it was so bad that I had to ask my husband to come in and help me get shampoo and shower gel and to make sure I didn’t fall. In order to do this I had to brace myself with my hands on the grab rails. Now for someone with fibromyalgia this was extremely painful as all my weight was put behind this as it couldn’t be put through my legs. I had to risk taking one hand off a grab rail in order to get shampoo or shower gel put into my hand by my husband so I could wash. Even then it had to be quick and couldn’t be done properly as I kept falling forward. Basically if my husband had not been there, there was no way safely I could have had a shower on my own. When oh when are companies going to realise that there are more than just infirm or elderly people and not every disability or wheelchair users needs are the same? Travelodge take a leaf out of Disney’s book please, before someone has an accident.

We decided after the long drive to just eat at the Travelodge for tea. Poor choice. Got the steak sandwich with chips. What I got was tinned steak in buns with frozen chips. With two diet Pepsi’s that where smaller then cans, it came to £22. The breakfast was an all you can eat buffet thing but choice was minimal. There was plenty of facilities nearby so if you didn’t want to eat dinner or evening meal at the hotel then soar, across the road and parking lot, has lots of other options.
The arena is actually part of the shopping centre. If you have ever been to the Metro Centre in Gateshead then if you can imagine where the food court is and Metro Land used to be then that was where the arena was.
Car parking facilities where fantastic at this shopping centre. We had never seen so many disabled parking spaces so close to the centre before at a shopping outlet.
The que was already huge when we arrived at 9.30 am and with it being held in a shopping centre there was a few issues for any one shopping in that area and trying to get past.  We hunted down a staff member, who seemed to be few and far apart and it was very unclear as to where you were supposed to que for early entry and std and there was no indication at all if you had a press pass. We were told to show our email to the staff on the door. We were then given our press passes and we were off. 
Inside there was no foyer area so nowhere to wait for people or hang around for a break. The one saving grace was with it being in a shopping centre you could come and go as you pleased as long as you got your hand stamped. This meant that if you wanted a break from the madness and the crowds you could go out and sit in the food court, grab a coffee or something to eat or if you where going to be waiting for a talk or photo shoot to happen, the option was there to look around the shops etc. This however led to its own issues. Later on in the day you were stepping (or in my case trying not to roll over) people who were sitting on the floor everywhere. This was obviously also causing issues for shoppers in the centre who were not attending the convention.

Once in you were faced with loads of stalls and traders of all kinds. Yet again showmasters had crammed in so many stalls that manoeuvring around the stalls and up and down the aisles was bad for any one, but was a logistical nightmare for someone in a wheelchair or with a pram. It made it very slow going and sometimes very frustrating to get around with some stalls being total inaccessible to any one in a wheelchair. They had spread the guests out over two floors. Plenty of room for accessing the downstairs guests but could see that as the day got busier the lines could be confusing. Access to the upper floor was via stairs, with no signs to indicate where the lift was to enable me to access that level. After spending a moment trying to ascertain where these where we give up and looked for a member of staff. That was easier said than done. Volunteers seemed to be in blue t shirts and pit bosses in red. Very few around. Eventually chased after one and asked a pit boss how to access the top floor. She seemed a little confused then pointed us towards the service doors and told us she didn’t know but had been told to point people in that direction this looked like no access to a lift but we trusted she knew better and tried to get through the heavy doors. As we did a security guard belonging to the venue came over to get the door for us. As he was doing this he asked where we were going so told him that we were looking for a lift to access up stairs. At that point he told us that we had to go back out of the arena, across the food court and the lifts where there. After getting out we had to cross the food court upstairs and round the corner to where the box office was for the arena. The doors where sealed so had to wait to be let in by a security guard. Once up there we did notice that there was a service lift and wondered if this was where she had been directing us too. Up here there was the other guests but instead of spacing the signing desks out they were all cramped up.
This made queuing difficult and again the lines confusing to follow for each guest and this was before they let in pay on the door and std ticket entry’s. When it got busy it was nigh on impossible to get through to any of the lines and trying to que without getting in peoples ways was not possible.  Staff up stairs, both volunteers and pits bosses where sparse to find and there was no Virtual queuing system so the ques where getting out of hand very quickly. At Newcastle the pit bosses and volunteers where very helpful with me being a wheelchair user and there was plenty of staff around. At Glasgow however as well as very little staff there were no concessions made for people in wheelchairs or disability’s including people on crutches. Their website itself and staff have stated that anyone who is disabled would be moved to the front of the autograph ques to make access easier for everyone but this did not happen.
Before they let the standard ticket holders in and pay on the door through it was already jammed packed and difficult to manoeuvre. On my way to interview Chris Judge, just before noon they had moved the people queuing to around the food court instead of down the centre where the shops where.
Yet again I think Showmasters underestimated the amount of people who would be attending the event equal to the size of the venue.
There was some issues as to where wheelchair users accessed the talk areas. The husband had to park me up out of the way of people and exits, (not easy) while he tried to find someone to assist, (did I mention the lack of staff?). This resulted in me being parked down in between two stalls. As I was waiting for him to return David Prowse (Darth Vader out of Star wars, for those not aware of this character or the films (shame on you)), came up beside me. Due to his failing health he was also in a wheelchair being pushed by a volunteer from Showmasters. As the volunteer was trying to sort out a rubber ramp type thing he noticed the Darth Vader sticker on my prosthetic which made him chuckle. I happened to mention how ridiculous it was trying to get around in a wheelchair to which he agreed.
We eventually found someone who directed us to a small door where we could see the talks. Although it was technically a space at the side of the stage next to a speaker and the area where the guests actually entered from, it wasn’t too bad. Then again it depended on where you were positioned as you were not looking straight on at the stage but having to turn to the side and past the person sat next to you. It also meant that come the Q & A time you were pretty much over looked if you wanted to ask a question of the guest. The space realistically could only fit three wheelchairs and their companions in, any more was not going to happen.
By 2pm the que showed no signs of dying down and even by the time we left at 3.30 pm people where still queuing to get in, even though there was barely any room to move as it was at this point. They had stopped people from entering and to be honest I am not sure how they worked out when enough people had left to let any more in due to most people being able to come and go with a hand stamp into the shopping centre. Yet again I think showmasters under estimated how many people would be interested in attending and in future should consider providing more things such as enough staff, directions being visible and accessibility of the venue chosen all need to be taken into account. Bear in mind Showmasters if you have disabled guests and attendees attending and you chose to book somewhere that looks accessible, my advice is, still check for your selves. Might be an idea to take on someone who can deal with these issues specifically. Spread the stalls out as well please this would help everyone in the long run. We know more stalls equals more money from traders per table but think about the people attending and how much more money the traders would make if everyone could access their goods and services Just a thought.

I think that these events are going to become more and more popular in the UK simply due to the fact that the fans and collectors are becoming more and more aware that they exist in this country and are no longer the privilege of the States. The celebrities are also more aware that the demand in the UK to see them is huge so more and more are going to be willing to attend these events here. People are also becoming more involved in the whole thing as they look for more places where they can go as a family and where better than some where the kids can get involved in dressing up, meet Darth Vader standing alongside Captain Jack, where princess walk the isles and all their comic and film
book hero’s and heroines come to life and not only that they can have their photo taken with them as well! All this while seeing their favourite actor out of a tv show or film and Mam and dad and grandparents can all get involved in the fun, whilst re living their youth meeting actors and actresses from their favourite 80’s and 90’s shows and films whilst at the same time picking up that must have print or collectable for the sitting room.
So come on Showmasters unless you want to be elitist and only appeal to the hardened film and comic fan or collector, cater more for the disabled, the kids and the families who really want to attend just as much as the diehard collectors and fans. The people I spoke to who said it was their first time where definitely thinking of becoming return revenue for you. Isn’t that what you want?

Chris Judge who played Teal’c in Stargate Atlantis, very kindly agreed to give us an interview. He got into college on the back of a football scholarship but was not that serious about playing as much as others where and was always geared towards acting. Originally doing pre-med at college he minored in Psychology and as a fellow Psychology Student I had to ask him about Statistics. It seems that all Psychology students around the world dislike it which is good to know I am not alone. Jim “Hacksaw” Duggan was another star I was lucky enough to talk to. Both he and Chris Judge thought that fans at conventions in the UK were fantastic, a lot more friendly and easy to talk too compared to the USA. Across there it is perceived as more of a business then an experience for fans and fans in the UK made it seem more human and hands on. In fact every one of the celebrities thought that conventions where more like one big family and they definitely seem to love that fact.
With regards to disability’s all the people I talked to saw it as no reason not to attend one of these events if you have a chance and I agree with them. There was definitely more people attending with prams and small children, who’s eyes just positively lit up when faced with all the cosplayers. A lot of the stalls here seemed to be catering their merchandise towards children although there was still plenty for the avid collector to buy, trust me!

Speaking to some of the attendees the biggest issue was once again the lack of room to get around with a pram or wheelchair, lack of staff support and lack of signs for lifts etc. Some guests were unaware that it was spread out on two floors or in fact how to even access the second floor. In fact am still trying to work out where the disabled toilets where and I have been home since 9 pm last night!  Although once found all staff where friendly. The general consensus as well was that there was no reason not to give people with disabilities extra help when getting autographs and photos done and the majority of people I spoke to have no problem with this. I am hoping to be allocated a press pass for London in the winter just to see how they deal with one of their biggest conventions in the UK, which due to size is now being held at Brighton and I will be attending (in full cosplay) the Newcastle Comic Con in November not just for pleasure but to see if they have taken anything on board from other cons and changed anything from March.
 On the subject of Cosplaying both the guests and attendees all loved to see all the cosplayers in their costumes. Robert Englund especially liked to see the fans dressed as Freddy and approved of the cross gender cosplaying. They thought it added to the overall
atmosphere of the convention and the fun of it. All the guests found it flattering when faced with a fan dressed as one of their characters, but shocked to find out about the bullying that takes place in the cosplay community.  They were also surprised about the image the UK press had given it recently. Chris Judge thought that the Sci Fi community and the convention community in general where more evolved and accepting of peoples differences, which is why I think it came as such a shock to him in particular.  Speaking to some of the cosplayers themselves, nearly all of them had experienced some form of bullying or inappropriate touching from other attendees at the conventions and even some outside of conventions such as taking part in photo shoots.
Out of the Cosplayers I spoke to all agreed that cosplaying and being part of that community helped them overcome issues such as depression, anxiety and social shyness as well as boosting their confidence and making new friends from all over the country. Convention etiquette is simple. If you would like to have a photo taken with someone in cosplay, ask, do not assume and don’t touch their costumes. Some of them take a long time, hard work and lots of money to make, having someone come along and paw at the costume or them is not acceptable. If you like a costume, tell them if you don’t, keep it to yourself. Out of all the cosplayers not one of them said no to an interview or photo when asked politely.
Oh and if you really want to know as badly as I did if people preferred Marvel to DC… Marvel was the winner. Although some arguments continued after I had left on the subject matter.


 Most of the people I talked to had not heard about iCosplay, although out of those that had it was mainly cosplayers. I mentioned that it was a charity that existed to stamp out bullying in the cosplay community, which was given a positive response, but the general overall consensus from the stars and attendees was, disabled or not, attend a convention, see what it’s like for yourself you might just like it. If you’re worried or nervous about cosplaying at a convention, take a chance, pick your favourite character and just express yourself, if it helps to bring you out of yourself, or makes it easier to interact and talk to people then even better. They very much seemed to see it as a form of escapism as well as fun. If you do experience any kind of bullying for any reason then tell someone don’t keep it to yourself and most of all at the end of the day enjoy it. Personally I really enjoyed
cosplaying. My first time was at Newcastle comic Con in March this year. I was worried about what people would say and think, especially with me being in a wheelchair, in my forty’s and overweight. I was so glad I did it though. The amount of people cosplayers and non-cosplayers and even guests who came and talked to me, liked my costume or wanted a photo taken with me was unbelievable and it was so much fun, I was hooked from that point on!  As Gareth David Lloyd, who played Yanto in Torchwood said, if you don’t like it then you don’t have to do it again. So whether you cosplay are not in the immortal words of Shia la beouf – Just Do It!
Hired The Stig as the getaway driver after starting arguments over Marvel or DC !