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Friday, 24 July 2015

JUDGE NOT LEAST YOU BE JUDGED OR AS YOUR MAM SAID IF YOU HAVE NOTHING NICE TO SAY THEN KEEP IT TO YOURSELF

So it begins. The long war of the six week holidays. We are only at the end of the first week and already am feeling slightly frazzled.
Good job I had the two night break down the metro centre with the just the hubby. Recharge my batteries with retail therapy and us time.It was lovely! The Marriott was lovely. They give us an accessible room although  am not 100% convinced it was. The door to the room was difficult to get through unless you where angled straight on, but the room was very spacious and a huge king size bed. The bathroom was big and the toilet had grab rails and an emergency cord but the bath was not accessible and no bath board or seat was supplied.
The room was next to the lift which I had also requested and access into the building was great although, disabled car parking spaces were limited.

 The Metro Centre as you would expect, very disabled friendly, but some of the shops left a lot to be desired regarding access and help. Shops such as HMV was laid out great for someone in a wheelchair or with a pram. Other shops where more then happy to help if space was limited for example by moving racks out of the way or getting what you needed. However there where shops such as Topshop who where no help what so ever. Getting into the shop to look at clothes was ok but once in maneuvering around the racks of clothes was a complete nightmare! Forget trying to have a look at the sales rack and trying to get to the check out to pay, well not unless you can bend time and space. There was a complete lack of help and those staff who where around did not offer any help what so ever. In fact their nails and cuticles looked of great interest to them whilst I was in the shop. Upon asking the assistant behind the cash desk why the access was so restrictive for some one in a wheelchair or with a pram I was told that it was down to head office and how much stock had to go out on display. The only thought I had leaving the shop was maybe if you have a pram or are in a wheelchair then you are not allowed to be fashionable!

But that brings me to people in general. I don't think I will ever understand the human race no mater how long I study Psychology. People can be so generous, kind and helpful and this sometimes takes my  breath away, but then you have people who can be so narrow minded, down right nasty and selfish. What happened to this society? They used to be a time when people would help each other out especially in their own community. Today people seem so hell bent on their own selfish lives. Every one is entitled to there own opinions but today people seem to think that their opinion is the only one that matters and woe betide any one who differs. They are shouted down, belittled and ridiculed. There was an article on people who Cosplay and attended London Film and Comic Con. Now as stated before people are entitled to their own opinion about this. Some people might think its silly or sad but then again these people  might watch Big Brother which I personally find moronic and sad, but I would not ridicule, poke fun or belittle  these people for that. However this "journalist" (and I use the term lightly) thought that it was fair enough to have open season on the Cosplayers. Not at their costumes or their inaccuracies if any but at the actual people. Ridiculing their tattoos, size and the fact they liked to Cosplay . In fact calling them " oompa lumpas". Some Cosplayers from iCoslay who support a campaign for anti bullying penned a reply. Today this journalist published his response and yet again could not keep civil about it. Telling them that they are sad and if they insist on playing dressy up then people where free to make fun of them and pick on them and that was not bullying.
So if that is not bullying what is? Isn't bullying about ridiculing, belittling or picking on people for being different? Race, skin colour, size, hair colour, physical ability, any one poking fun for these reasons at a minority group would surly be classed as bullying, so why did this journalist think that what he was doing acceptable and NOT bullying. Because I look different in my wheelchair, with prosthetic legs and belong to a minority group does that give people the right to ridicule me? In this day and age every one is preaching about understanding, inclusion, standing up to stigma but how can we do this when our own so called press find it acceptable to put people down for this? Whether it is physical disability, mental health or Cosplaying the stigma needs to be removed across the board.YES I am a wheelchair user, YES I have suffered from depression and sometimes still do, YES I have no legs and YES I enjoy Cosplaying when going to film and comic conventions.
I am not ashamed of any of these things, why should I? Take me or leave me but this is ME, this is who and what I am. I will not be made to feel ashamed for any of it just because I do not fit into someones idea of normal. What is normal any way? Is any one normal? This journalist is an avid football supporter does this give me a right to tear into him in a public forum or a national newspaper and ridicule his size when he wears his football colours, how he does his hair, his age or the fact he should grow up and get a life (one of his other response lines in the article), instead of cheering on men kicking a ball around a field, swearing at the ref or chanting silly songs to the opposing side?It should not surprise you to find out that this same journalist ridiculed the disabled  and has had numerous complaints against him. He kind of reminds me as a male version of Katie Hopkins to be honest.

The event I am co hosting in October is just about getting together, having fun and at the same time raising money for a worth while cause. I have managed to get the help of some fantastic Cosplayers to help promote the event and take part in the evening entertainment, all free of charge, all given up their time. Their costumes are fantastic, the time, money, sweat, blood (literally if they where sewing by hand ) and tears that went into creating these masterpieces , all paid for out of their own pockets. They are coming with me to visit the Young carers as well to give the kids a treat and a chance to have their photos taken. This is more help then the press, celebrities and even companies have offered. (I have to mention here though that Sun FM , my local radio station, have been very supportive). Who would have thought that any business, after all that is what the newspaper is, would want to be associated with a small minded, bigoted person who represents and is the face of their company?

The one thing I have learnt from doing this event is every one and I mean EVERYONE wants their cut. The venue, the celebrities, the agents, fundraising sites even some of the companies who "offer" donations for prizes. Then you have company's like The Prop Store who send you a collectible worth £200 with out a blink of an eye. The celebs are the worst, I now have an appreciation for Showmasters and Rouge Events as to why they charge so much for tickets and autographs. Some demands including  'lunch money' and  cars to all airports as well as first class flights and two hotel rooms,  just adds to an already extortionist fee for attending these things and it being for charity does not count for squat. In fact they will stand there and shout your cause to the rooftops without knowing or caring anything about it as long as the price is right. I understand that they have to make a living but some of these Celebrities are making more then enough with out charging through the nose for the fans to met them.

 I feel privileged if they even bother to reply to my emails !



You can find the event details on Facebook https://www.facebook.com/events/417935758373799/

Website http://thepsychtwins.bravesites.com/

The Psych twins Facebook page https://www.facebook.com/psychtwinsfundraising?fref=ts

Sunday, 5 July 2015

DARE TO BE DIFFERENT

So Tyler's transition into comprehensive is going well. Too well, he has really enjoyed the couple of days he has spent at the school looking around and taking part in all the activities. However am wondering if it is going to be a different story once he is there full time, having to mix with the older kids and change classes all the time, learning a totally different routine. Biggest problem with him having ASD is that he does not cope well with his routine being changed.
I worry about how he is going to cope with the changing routine, the overload on his senses of sights, sounds and smells, the amount of people there are going to be. Any one of these is a potential for a meltdown for Tyler. That's not even mentioning the bully's , you know how cruel kids can be when they find out you are different to them. I certainly do. Having vivid memories from my School days at comprehensive. Constantly feeling left out, on the edge, unliked and used for peoples verbal punch bags when they felt down about themselves. Various cat calls of "spaca" " granny boots" "freak" and "cripple". Maybe am just being over sensitive because of what I have gone through, after all his differences are not physical, but even though things have supposedly moved on etc etc kids can still be cruel little gits when they want to be.
Maybe am just being a typical mum but I can't help but wonder if we are in for a rough ride when he starts school.

This brings me to the think about the difference between what is meant between "disabled" and "accessible". In this country disabled and accessible seem to mean the same thing.  Although there has been some hotels in London when we where looking to book somewhere for the London Film and Comic Con that seemed to stretch the idea of both. One hotel thought that when they listed their hotel as disabled friendly it did not matter that disabled access only meant that it was a wide foyer and automatic doors but that there where a  couple of steps at the front to access the building in the first place. When questioned about disabled access into the building, I was told that there was no ramp but if I could not manage the 6 steps outside ( bearing in mind I had already told them I was in a wheelchair and could not do stairs) then some of their staff would come and lift me in....really??? No. I dont think so.  "Disabled" toilets have both grab rails and raised toilets as well as lower sinks and wider doors for wheelchairs. The same with accessible buildings. They have automatic doors, bigger lifts and ramps. But the same thing is not true for other countries.
This has been noticeable when I have been travelling to America. In Orlando Accessible means a slightly bigger toilet with a grab rail and a slightly higher toilet, but not actually big enough to go in with a wheelchair. If you are a wheelchair user then you need to ask where a Disabled bathroom is which is then big enough for a wheelchair to get in and position/ turn around, lowered sink and hand dryer and a higher toilet and raised toilet seat and grab rails.
Bear in mind the toilets in Florida are a lot lower then in the UK so when I say the toilet is higher it means that it is about the size you would get in this country. But not every country has facilities for disabled people regardless if they are in a wheelchair or not. So I suppose we should be grateful that we do in the UK.
But are you like me? I get frustrated when you have a large male and female toilet block but only two disabled bathrooms and people still insist on using the disabled ones, even when there is no line in the other ones. This is  because they want to do their makeup and talk to  their friends or they just can't be bothered to walk the extra few steps  to the other toilets. I never have a problem with some one with a pram or small toddler especially if it is a dad out on his own with the little one . Using the disabled toilet in that situation is fair enough in my opinion. I don't know whats worse though the fact when they come out they wont look you in the eye or they come out head held high and completely blank you as if you don't exist and you are not sitting there at all !

But that is my ramblings for today. Another busy week behind me and another one ahead of me. Pain killers still not working so guess its back to the docs for that. More issues with the hands so cooking is now becoming an issue for me and any work I do have to do am finding that I am fitting it in as and when the pain and swelling allows me. The event for The Psych Twins is coming along nicely and we have been very lucky with the prizes we have been donated so far. Now we are just waiting for the printers then we can look at doing the promotion in the Bridges. Forced to look at new cars by the hubby as our mobility car is due to be renewed and preparing myself for the mayhem that will soon be the summer holidays.

If you want to get in touch with me you can on the following links for linkendin, Facebook and Twitter
https://www.linkedin.com/profile/preview?vpa=pub&locale=en_U

https://twitter.com/greebo89

https://www.facebook.com/theamputeediaries

or find out more about The Psych Twins

thepsychtwins.bravesites.com

Monday, 29 June 2015

MOVING FORWARD WHILST LOOKING BACK

Last week was all busy, busy, busy.
The Pysch Twins are going bigger and better each passing day with more and more support from local business. Which is wonderful. The results where posted of our final results for this year at University and am very pleased to announce that I received a resounding pass and proceed onto the 2nd year of campus. This is in effect will be the third year of my extended 4 year degree.
Jo and I have also been asked to do an hour slot talking to the new students in September for the level zero course during their introduction week which is great news and a fantastic chance to get some experience. On top of this we where also asked to take part in the marketing for Sunderland college. We had a lot of fun acting out for the photographer so looking forward to the results of that.

On other good news I was awarded my PIP (Personal Independent Payment). For those of you who do not know what that is it is a new benefit that is taking over from DLA ( Disability living allowance). It has been quite a controversial move by the government to replace the DLA with PIP as the rules governing the award have been tightened. This means that there are now more and more vulnerable  people who need this money to get around in the form of a car on the mobility scheme, who are left without the money to aid in their day to day routine , getting out the house or being able to work. Along with cutting the Independent Living fund , reducing the amount of money available to support disabled people whilst in work and the rumors of student finance and help for disabled students being cut or abolished, more and more people with disabilities are finding it increasingly hard to to get a job or keep it.

You have heard of the undateable's? Well met the unemployable's

That's people like me and people like my colleague. I have so many health issues that I could more then likely fill a A4 sheet with it. What that means is that I may end up having days, like this weekend where I am in so much pain I can't sleep much and barely move. In a normal five day forty hour week this would cause issues and would mean time off work on a regular biases. This doesn't mean that I am past my best before date, I still feel I have a lot to still give . Experience, skills and knowledge.But then you add on the fact that as soon as some one sees you as an amputee in a wheelchair, never mind telling them about the other health issues and medication, they immediately write you off.
Then there is people like my colleague. She has two children one with ADHD and one with ASD. Needing to be available at all times for her children just in case their was a phone call from one of the schools . Then you need to look at the mental health issues we both deal with. Depression, stress, anxiety and panic attacks. Sometimes so debilitating that you can not leave the house. There are a million people out there with the same kind of issues that still feel they have something to give , still want to work.

I miss the days of not needing anything stronger then a paracetamol for a bad head. Being be able to sleep with out a machine to make sure I don't stop breathing. To pick a pen up and write without losing the feeling in my fingers and hands. To not drop pans because my grip goes. This is just some of the joys of Fibromyalgia, apparently brought on by trauma from the two amputations and lots and lots of other operations I had gone through.

Do I regret having my amputations? The first one,,no it give me a new lease of life but then things went wrong and I ended up with the second lot. Do I regret that? .......good question. Yes sometimes, these days more yes then no.There are so many things I miss not having legs/feet. The feel of a carpet, walking on the beach feeling the sand between my toes, being able to walk into the sea, swimming with out aids and hoists. Just anything straight forward like going out and not thinking if there is stairs or disabled toilets. Funny as it sounds, being able to sit where ever the hell I wanted.

I digress. That story is for another time, another blog.  The fact that we want to work is why we have started The Psych Twins. This is a service, non profit and no staff...yet.  we started up The Psych Twins to raise money for local North East charities who get over looked. We are currently working with the Carers Center in Sunderland to raise funds for them by holding a Halloween Monster Masquerade Ball at the Stadium of Light in October.
The initial expense is coming out of mine and Joanne's pockets, which is scary,  so hopefully we will sell all the tickets . Once our costs have been covered we are hoping to raise in the region of £2000 plus for them.
 What we would like to do eventually, would be to open a Center in Sunderland that would offer help, advice and counselling/ therapy free for any one and their families , adults or children in the North East  who are disabled , whether it is a mental health issue, physical disability, amputee, wheelchair user, ASD, ADHD etc. We want to offer  a drop in center for advice such as  whats on in the area that is suitable for them, help that is available that they might not know about or just to  pick up leaflets or application forms for  services or help such as the Cinema card, attending a festival or looking at starting work or going to University. There is help out there but not very easy to find and the only reason I know is the amount of man hours researching it. But we also want to offer kids activities free such as support groups for parents with children who have ADHD or ASD for example where they can come and met and talk to people in the same situation while the children have fun doing activities or party or a sensory room. Support groups for amputees etc again where they can get together with others who are in the same situation and can support each other and not feel isolated. Also offer help applying for benefits etc but also offering counselling/ therapy for those people who need that extra one on one support. 

Its a big dream but we are determined to make it a reality. We want to hold drop in sessions at various community centers which we will fund with bake sales and coffee mornings, then the big push is getting premises to open the center.  what we would like is to get funding in order for us to take on the staff with us that we are going to need to run it and operate it as a business but keeping it a free service for people to access. This would be done by (hopefully) grants, fundraising etc. We want to hire staff who under normal circumstances would be classed as un employable by most people due to their health issues and disabilities, time they might need off. People  who have the skills and knowledge and still want to work but are often looked over due to this.

My life is a bit of an open book lol but I hope that if just one person can see that their life is not over just because of their disability or it gives one person the courage to try something they never thought they could do , or one parent the comfort knowing that every thing will just be fine then Its been a success.

Depending how successful this years ball is, we would like to hold the ball  every Halloween for charity. With any luck getting bigger and better !