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Saturday, 21 May 2016

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.


Sunday, 20 March 2016

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.........

Sunday, 31 January 2016

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.....