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The person behind the blog

About-me.png

I thought it would be good to share more about me and my personality so you can get to know the person behind the blog. These are words and phrases I associate with myself.

  • Total Hip Replacement/ Perthes Disease– As of August 2011 I have had a false left hip, done aged 25, made of plastic and ceramic with a metal stem. I had it done due to osteoarthritis in the hip brought on early by childhood hip issue Perrthes Disease.

  • OCD– Obsessive Compulsive Disorder, diagnosed aged twelve.

  • Autism/ Aspergers– I was diagnosed aged thirty-one, but have suspected I have it for years.

  • Disabled- I am less physically disabled now than I used to be thanks to my hip replacement, but know that it will not last for ever. Also my mental health can make me feel somewhat disabled at times. Autism is not a disability as such if you see it as just a different way of thinking, but it is often classed as one such as when applying for benefits or educational support.

  • Social Housing– I live in social housing,which is what used to be known as council housing in the UK, but now run by different housing associations. I have been living in my one bed flat since Easter 2016 and I really like it.

  • Benefits– I receive government benefits. Currently I get Employment Support Allowance as for various mental health reasons I can not work full time right now. I also get housing benefit to help with my rent. I have in the past had Disability Living Allowance, now changed to Personal Independents Payments, but I am not eligible for it at this current time.

  • Volunteer– I have been volunteering for various local charities and good causes since I was seventeen. It helps me to get out more, make friends, learn work related skills and add to my CV. I currently help a community craft shop, do administration work for my local community centre and help another charity run their Facebook page.

  • Drama Degree– I graduated the University of Lincoln with a BA (Hons) Drama degree in 2011. I really enjoyed my three years there.

  • Sister/ Aunt– I have one older brother and am an aunt to his two children, a nephew and a niece. I love being an aunt.

  • Devon– My home county where I lived all of my life, apart from time away for university.

  • Crafting– I have been making cards to send people for years. I now also make small things to sell under the name The Gothic Butterfly. I have a small shelf in a local craft shop and a Facebook page. I decorate gift boxes and bags, make gift tags, book marks and other small objects.

  • Colouring- Now it is very popular to do adult colouring, but I was doing it before it was so easy to even get adult colouring books. I find it helps me to relax and distracts me from my anxiety.

  • Theatre– A life long love of mine is going to the theatre to see many kinds of performances. I love musicals, plays, ballet and modern dance. I also enjoy some opera and stand up comedy, although I am a bit more fussy about which of these I would go to see.

  • Pub Quizzes– I enjoy going to various pub quizzes regularly with a group of my friends. Not only is it fun to take part and test out how much general knowledge I have, it is a good way to socialise.

  • Writer– I have always enjoyed writing and have had good feedback for my writing more so than anything else in my life. As well as this blog, I write a daily diary which I helpful to explore my thoughts and feelings. Writing for me can be kind of therapy. I also have pen pals around he world I write letters to.

  • Internet– I love the internet, it is somewhat of an addiction for me I admit, but it has been such a help to me during low periods of my life I do not care. Social media is for me a tool that I can use to express myself and keep in touch with friends which as an autistic person I always find quite tricky. I mainly use Facebook, but I also occasionally use Instergram for photo sharing. I obviously use the internet to share this blog and like most people use email. I also use the internet for a variety of other functions which I have written about before in a previous post.

  • Cafes/ Coffee Shops– I really like to drink coffee and hang out in coffee shops. Although I do go to pubs sometimes, I tend to spend more money and time in cafes. I often get quite tired from my mental and physical health issues, cafes are a good place to go and recharge my batteries when out. I like the relaxed, often friendly atmosphere of a cafe. I also really like coffee and cake.

  • Television– I watch a lot of TV. I find it helps with my mental health to distract me from my own anxious thoughts and not over think negativity about things in my life. I also really enjoy certain programs. I really like Call the Midwife and Doctor Who. I like some documentaries and have learnt a lot from watching many on the BBC. I also like some sitcoms and animated comedy such as American Dad.

  • Music– I enjoy listening to music a great deal. My favourite bands are The Rasmus, a Finnish rock band and Train, American soft rock. I enjoy the music of old bands such as Pink Floyd, the Kinks and the Mamas and the Papas. I like a lot of funk music from the 1970s and 80s. I like a lot of musicals show tunes. Also when in certain moods I enjoy classical music.

  • Cheese– A life long love of mine is cheese, I even ate strong blue cheese as a small child. I am yet to find a cheese I do not like (apart from goats cheese, which has an after taste I dislike).

  • Dark Purple– This has been a colour I have been drawn to all of my life. I like it in nature, in things that I wear and around my flat. I am not sure why this is, but I remember liking purple things from a very young age.

Writing this you would think would of been easy, but it was harder than I thought it would be.  I had to work out how much I wanted to reveal about myself and what things I even do associate with myself.  Other people may associate different things with me, but this is how I see myself.

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Common Sense and Respect for the Disabled Please

This is a rant, a rant about things disabled people hate, at least some disabled people. Not everything on the list will affect all disabled people and these are just what I have experienced and observed.

People who judge others for using disabled facilities such as toilets and parking spaces without knowing them. I used to have a disabled parking badge due to not being able to walk very far without getting tired or in pain, but I did not always use a walking aid. Sometimes people would stare at me as if to say, why have you got a badge when you can walk. I got the same look sometimes when I would come out of a disabled toilet. They did not know me or my situation and it was none of their business why I needed to use disabled facilities, but even a look can make you feel judged. I have heard stories of people getting notes left on their cars for parking in disabled spots being accused of using someone else’s badge when it was their own!

Bus drivers who refuse to let a disabled person on as it would mean them having to get up to get the ramp out or having to ask someone with a push chair to fold it and move seats. The space at the front of a bus is not for a pushchair, the signs clearly state it is a disabled space, yet some drivers do not seem to enforce this. Bus drivers who refuse a disabled person are discriminating against them. A recent court case that went all the way to the Supreme Court found in favor of the disabled claimant in that ‘the court said the company should consider further steps to persuade non-wheelchair users to move, without making it a legal duty to move them,’ (http://www.bbc.co.uk/news/uk-38663322). So it is an ongoing battle with some drivers to get a space on a bus.

When a disabled toilet is used as a storage area or left out of order for a long time. Sometimes it feels like the disabled toilet is only there as a legal requirement and the company do not actually care if you can use it or not. For example a pub near me uses their disabled toilet to store things. You can still technically use the toilet, but the rails are blocked by things, and a lot of disabled people need the rails. My local supermarket has had an out of order disabled toilet for about a month now. Businesses are being short sighted when it comes to disabled toilets sometimes as it could lose them business. For example when I am on a night out with some of my friends, some of them are very disabled and we would choose to not go to a bar that we knew had bad disabled facilities. This would mean them losing out on not only the disabled persons custom but all their friends custom as well.

Shops that give little or no thought to disabled customers. Really heavy doors can be a  problem. When I was on crutches I used to use my body to push the door open, but with heavier doors this was tricky. For those with arthritic hands and wrists heavy doors can be impossible. Automatic doors are better for disabled customers, or at least a lighter door. Then once inside the shop the lack of space between rails or shelving can be an issue. Some clothing shops have over full rails that are too closely packed for a wheelchair user to get past. I used to knock things off sometimes in crutches if I was not careful. I have noticed that some shops have too much stock piled up on the floor between shelving units which can mean no space for a wheelchair or walking frame to turn around. Without the space to move disabled customers will shop elsewhere.

Poorly maintained pavements and walkways. Loose paving slabs and crumbling tarmac can be a trip hazard for anyone, but even more so for those with walking aids. I used to trip up on loose slabs when I was on crutches and this could hurt my hip quite a lot. People in wheelchairs can fall out of their chair if the wheels get caught up on loose slabs or in pot holes.

Dog waste and rubbish left on pavements and paths. It is unpleasant for anyone to have to smell and see, but for the disabled it can be very annoying. Dog waste can get on the wheels of someone’s chair and it can mean dragging it around. It is not always easy to see the ground right in front of your wheels to know to avoid it. Blind people also have obvious problems with dog waste since they cannot see it to walk around it. Rubbish can also be a problem since it can get caught up the wheels of a chair and then cause the chair to not move smoothly. I have noticed a significant increase in both dog waste and litter in the last few years and this shows a lack of respect for both other people and the environment.

People who park in front of drop down curbs on pavements or park on the pavement. A disabled person may not be able to cross the road without a drop down curb and may have to go an awful long way to find the next one, which could take them a long way out of where they want to be. There is a convince store in my town that people often park outside to pop in quickly, but they often park in front of the drop down curb. They often say they will not be very long, but what If the queue is long or they get distracted by something else? Parking on the pavement is just as bad as it means a disabled person may not be able to get passed. Often this means a disabled person will have to go back on themselves for ages and divert a long way round or simply not be able to get where they want to go. I have often had to walk into the road to get around a car and some disabled people simply cannot do that.

People who talk for you or to your companion about you when you are right next to them. This seems to happen especially to those in a wheelchair, it is as if because your legs do not work nor can your mind to talk properly. This is patronising and rude. When I was younger if this happened when I was with my parents I would just start talking anyway and join in showing them I was more than capable of talking for myself, in fact they might have more trouble getting me to be quite! Sure some people do have learning difficulties that come with a physical disability, but even then it still does not mean they cannot talk for themselves in most cases.

Poorly designed disabled toilets. Not all disabled people are in wheelchairs and want the sink low, in fact after my hip surgery I needed the sink not to be low as I could not bend far, but needed the rails and raised seat of a disabled toilet. Some disabled toilets are far too small for the needs of some disabled people who may need a carer to come in with them as well as space for a wheelchair or walker. A lot of disabled toilets also seem to lack a mirror which assumes disabled people do not care what they look like, which is wrong, disabled people are just as likely to want to check their make up or hair as everyone else.

People who say ‘you’re doing so well considering’ or call disabled people brave. They are very patronising things to say.  How do you know I am doing well? For all you know I am having a really bad day and on a good day you would not even notice I was disabled. How is it brave that I left the house and got on with my life? What am I supposed to do sit at home and rot? I cannot live my life not disabled so I just get on with it the best that I can.

Being accused of being a benefit scrounger. This is the big one that all disabled people hate. The media often make it seem like an awful lot more people are scamming the benefits system than actually are. The vast majority on benefits are on them legally with a good reason. Most people would not choose to be on benefits if they could help it. Having to prove yourself as ill and jump through the hoops they require to get them would put most cheats off. Being on benefits does not make me lazy or pathetic. You should never judge someone for being on benefits or any kind of welfare without knowing the full facts.

Disabled people are on the whole sensible and understand that sometimes some of these things cannot be helped under certain circumstances. What we ask for is to not let these things be issues when they do not have to be. A bit of common sense and respect is all disabled people want. Disabled people can be an active part of society, if society lets them.

My Perthes Hip Story

This is what I can remember of my Perthes hip journey.  I may have missed some things out and got some of the exact dates and ages wrong, but it gives a good idea of what I have been through with my hip.

  • I was diagnosed with Legg Calve Perthes disease in my left hip aged seven in 1993. I was referred to an orthopedic specialist who used x-rays to diagnose me.  I was told to reduce heavy impact activity on the hip.  I was never very much into sports anyway, so did not mind having to give up things like PE in school.  However I was disappointed to have to leave my ballet classes that I really enjoyed.  I remember my mum pushing me to school in a large buggy to save me walking.
  • When I was seven or eight I spent a week in hospital. My left leg was put in traction for the week, meaning it had weights put on the end to pull the hip joint out more in preparation for surgery.  They were going to put me in a broomstick plaster, but when they opened me up for surgery they decided my hip was past the point they could do anything and nothing was done.  I think it was both disappointing and a relief to not have the treatment, as those plasters look very difficult to deal with.  It might have been good to try the treatment, but having heard stories of people who were in them for ages still going on to have hip issues later it sounds like it may not have been much use anyway.  After my hospital stay I used crutches for a number of months, possibly a year or more, and then moved onto a walking stick.
  • I had for a few sessions of physiotherapy. I did the exercises they give me at home some days, but probably quit doing them far too soon and did them too sporadically.  It is not easy to get an eight or nine year old to do daily exercises.  Some days the exercises hurt too much anyway.  My mum took me swimming more often on the advice of the physiotherapist. Swimming is one form of exercise I actually enjoyed as a child.  Swimming is less painful on the hip as the water takes the weight off it.
  • Aged about ten or eleven my hip was less painful for a couple of years or so. I stopped using any walking aid and managed to get about better.
  • My hip got more painful again and I started to use a walking stick aged thirteen. My doctor prescribed me with pain killing tablets that were at a dose not available over the counter.  I go back for more physiotherapy and a few sessions of hydrotherapy.  After the sessions end I do the hydrotherapy exercises at the regular swimming pool for a while, but again probably not often enough.
  • Aged fourteen I got a wheelchair for use on my worst days pain wise. It was not for everyday use and I used it when I had to walk long distances or was in a lot of pain.
  • In my mid to late teens I started to get mild shoulder, neck and back pain. My posture started to suffer due to years of walking badly.  My limp and slightly sideways gait have made my back very slightly curved and my shoulders somewhat rounded.
  • In my early twenties I find out the pain is now due to osteoarthritis brought on at a much earlier age than normal due to the damaged state Perthes left my hip in, which I gather is fairly common in people who had Perthes. I attend a pain clinic at the hospital to try and learn to manage my pain better, but they do not tell me much I did not already know.
  • I saw an orthopaedic surgeon and ask about having a hip replacement, but was told I was too young. I continued to use a walking stick till I was about twenty-one.  I gave up the stick when it no longer helped with the pain.
  • Whilst I was at university aged twenty-four I got a frozen shoulder. It was very painful and made moving my arm and shoulder very difficult.  Physiotherapy helped a lot with ultrasound massage and daily exercises to do at home to help keep the shoulder loose.  I did the exercises every day for several months which seemed to help.  I was told the frozen shoulder was due to my posture issues from my hip.
  • I ended up on crutches aged twenty-four when my hip pain got so bad I could hardly walk sometimes without them.
  • I decided it was time I saw an orthopedic surgeon again whilst I was at university and this meant I could see a different surgeon since I was in another part of the country who might look at my case differently. I ended up being referred to two different surgeons (not sure why).  One surgeon was based at the main county hospital and the other at a specialist orthopaedic hospital.   Both agreed my hip was beyond resurfacing anymore and both agreed they would give me a total hip replacement if I wanted.  However the county hospital surgeon seemed less keen for me to have my hip replaced and tried to talk me out of it,  so I went with the specialist hospital since they seemed to think I really did need it doing and understood why I wanted it so much.  I initially met with the surgeon’s assistant who seemed to actually know something about Perthes and said he would recommend me to his boss straight away as a case for a new hip.
  • I had my total hip replacement on August 3rd 2011 aged twenty-five, a month after completing university. I spent three nights in hospital, one before the surgery and two after. The day after surgery I went to physiotherapy.  I had exercises given to me to do twice daily at home to build up the strength again in my legs.  I was given some equipment such as a very handy grab stick as I was not allowed to bend more than a ninety degree angle for six weeks, a toilet seat raise and a toilet frame to help lower myself on and off the toilet.  They were going to loan me crutches, but I already had my own pair from before.  On day one I used a walking frame to go to the toilet, but from day two I was on crutches.  I used crutches for about three or four months after surgery, and then used one crutch for a while.
  • About six to nine months later I went back to physiotherapy due to muscle soreness around the hip. I was given a new set of exercises to advance me on further with my progress.  I attended a weekly physiotherapy gym for twelve weeks at the hospital.
  • The GP referred me to podiatry as she saw I had flat feet. The podiatrist also said my feet turn out too much when I walk due to years of walking badly with my hip.  This may have contributed to my back and posture issues.  I now have insoles for my shoes with arch support and a heal slope to turn my feet slightly more forwards.  The insoles do make walking slightly more comfortable for me.
  • Just after a year after my surgery I managed a twelve mile sponsored charity walk. Aqua fit classes at my local pool helped me to get fitter and stronger.
  • I started to get mild posture pain again aged twenty-eight. I went back to physiotherapy and got exercises that I now still do daily to keep my back, neck and shoulders from becoming too weak.
  • I also go back to physiotherapy for muscle weakness around the hip as it was causing me pain on and off. I now also do a few leg exercises daily to keep my legs from getting too painful and stiff.

Remember that every Perthes story is different and what works for one person may not work for another.  Some people have more mild cases and totally recover, some go on to have mild pain as an adult, but at a more manageable level and some like me go on to need a total hip replacement.  I feel lucky to have my false hip and love how much more I can now do because of it.  I take pain medication much less frequently and even then at a much lower dose than before.  I am fitter now than I ever remember in my life.  I know one day I will need a hip revision, but I feel it has been more than worth it.

Officially a freak and relived

I have always known there was something a bit different about me and I have long suspected I have autism, but no one actually sent me for testing till I was thirty one. I had to actually ask for it and then wait over a year for the appointment at the clinic. It took three appointments, two of testing and one for the results. I had to take a close family member with me, in my case my mum and she also had to answer a load of questions about me and my childhood. (Not so easy to remember everything over twenty years later!) I am now officially diagnosed as high functioning autistic or what used to be known as Asperger’s, but they changed it to reflect the fact that high functioning covers more types of people with it. They asked me how I felt about the diagnosis, so I said relieved, it helps explain a lot about me. It also helps me explain myself to others at times and I am hoping in future will help with things like benefit claims or getting job seekers support.

Not long after my diagnosis I found a fantastic book in the library called Freaks, Geeks and Asperger’s Syndrome by Luke Jackson. He wrote it when he was thirteen and it is a brilliant insight into what it is like to have high functioning autism. I can relate to a lot of what he says and he helps me to explain things better to others. I will use some quotes from the book as jumping off points for me to discuss my autism.

AS (Asperger’s Syndrome) is usually described as a mild form of autism, but believe me, though the good outweighs the bad, there are some bits that are most certainly not mild.’ You try telling the parent of a screaming child far too old to be having a temper tantrum in the middle of the street that it is mild! I remember wishing it was less mild sometimes then at least they may have taken my problems more seriously in school, but of course I am glad it is not any worse.

When we didn’t know and didn’t have a diagnosis (or were not told about it) it was a million times worse than you can imagine.’ ‘You may think that if the child or person you are seeing has lots of AS traits, but you can’t fit them neatly into your checklist of criteria, you are doing them a favour by saying that they haven’t got it. In fact this doesn’t make them not have AS, it just muddles them up more and makes them and all around them think they are even more ‘freakish’.’ Quite a few people have asked me if I really needed a diagnosis, would it not better just to be happy with myself as I am. I get where they are coming from, but knowing is better than not knowing, as it means you can understand yourself a lot better and so can others. I remember being bullied as the class freak and weirdo. I was the odd child that did not quite fit in and I never had any way to explain myself. If I had been diagnosed it may have helped school to help me and it might have helped me to feel like at least I was not a total looser and freak.

To be on the autistic spectrum is not the same as being on death row- it is not a death sentence, it is not terminal, it is merely a name for a lifelong set of behaviours’. So if you suspect you child has autism push for them to get tested for it and do not ignore it. It is not the worst thing that they could be diagnosed with and it may even help them to know they have it. It could help them find support and maybe even get taught in school in a way that is more useful to them.

I can imagine how adults have gone all their lives confused and misunderstood would seem as if they had a severe mental illness. I am sure it would cause depression too.’ I have suffered from depression in the past and have anxiety issues which I am sure are not helped by my autism. I think that if I had been diagnosed and helped at a younger age it might have helped me to not develop such bad mental health issues. Not knowing what was wrong with me as a child did cause me to feel very isolated and frightened at times, which I know made me more of an anxious person and depressed.

I just have to talk about it and the irritation at being stopped can easily develop into raging fury.’ I have always been known as a chatterbox, but for me not talking as a child just seemed wrong, if I had a thought I had to express it out loud. To not be able to express my thoughts was very upsetting and I felt like if I did not express them they would get louder and louder in my head till they were too much to handle. I used to get very angry if I was interrupted or prevented from talking to the point I would scream and shout just to be heard. Although I still talk a lot, I no longer feel I have to express every single thought that comes into my head and have learnt to be quieter in some situations.

Seem to speak rather differently and have difficulties understanding a lot of other forms of communication such as facial expressions and body language. These can be learned to a certain extent I think.’ I now think I am quite good at recognising facial cues and reading body language, but it took years of practise to get this far. I sometimes struggled to understand people when they were not being literal. People seemed to make jokes about things that I did not find funny at all. I understood that it was sarcasm, but I often found I did not like the joke. I think my performing arts and drama studies have helped me a lot in understanding body language, expression and emotion in others.

It seems as if the taste buds are over or under developed.’ It is to do with the presentation, the texture and the smell of food as well as them needing sameness.’ I had a huge thing about the texture of my food as a child, I hated any lumps or bits at all, I even hated bread with seeds in. I wanted all my food smooth like a paste when I was very young. Bits felt very wrong in my mouth and hard to swallow. Now however I love texture in my food and adore seedy bread.

Most AS kids genuinely have a really hard time with games.’ I hated PE in school, sometimes for me it was like a form of torture. I had one teacher who accused me of being lazy, but it was not that at all. It was the fact I would have to change, and then change back again, which with my OCD was one of the hardest tasks they could set me to do by myself as a child. The whole changing into a PE kit thing seemed pointless to me anyway as I could barely catch the ball, let alone do much with it, so I never broke into a sweat. I was unable to keep up with team sports and my coordination for catching and throwing is woeful. It was not helped by the fact that I had no friends whatsoever in my first secondary school and whoever ended up with me on their team resented me for it.

It is very unfair of the media to portray us all as people who talk continually about train timetables or constantly talk about dates or facts, or computers. We are called freaks and nerds enough anyway.’ ‘Despite the film Rain Man, we don’t all have these amazing mathematical skills- I wish!’ ‘Savant autistic is very rare- I seem to have got the nerdiness and freakishness, but none of the genius. These programs seem to make Joe Public think we should all have some seemingly supernatural ability and that is not at all helpful.’ I have in fact got terrible maths skills; one teacher even suggested I might have a maths learning disability. I am now able to use enough maths to be able to function in everyday life, but as for fractions and algebra I never understood them. I find train timetables very useful for catching trains, but dull as ditch water to discuss at any length. I can be very nerdy at times, but I really do lack the genius part, I actually had to work very hard to get to the degree I now have and was never a child prodigy at anything.

I just don’t want to run with the pack. I don’t see the point in pretending to like things when I don’t.’ I never seemed to like the same things at school as everyone else and I most definitely did not fit in with the social life my friends had at college. I could never understand why they wanted to go out drinking heavily and end up in some nightclub listening to awful music. I never saw the point in pretending to like things just so people would be my friend as they would not have been true friends anyway. I was bullied for being different in school and was actually quite depressed for some of my teenage years, but I never saw why I should have to fit in just to please them.  Both at university and now I have made real friends who actually have some of the same interests as me and we enjoy spending time together.

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I recently heard a radio programme that was very moving and very interesting.  It illustrates my views on the disabled very well and goes with some of my blog posts so I thought I would share it.  It is about a child who is able to communicate only by using an alphabet board using his eyes, but boy does he communicate.  He and his parents are now campaigning for special needs education to be more meaningful and actually teach the children.  As the child himself puts it speical needs education was like ‘high end baby sitting’ for him and I can relate in some respects to that.  I found the programme inspiring, showing that you should make use of the skills you do have and not to worry about what you can’t do.  I would highly recommend people to listen to it.  Please copy and paste the link to listen.  (Sorry if you are aborad and the show will not play).

http://www.bbc.co.uk/programmes/b07zxnh5 Hardeep’s Sunday Lunch series 5 ‘Song of Voice’

 

 

Disabling Attitudes

The reaction I get when someone realises I am disabled is usually one of three

The patronising sympathy attitude

Recently in a café a man came up to me and said I was doing really well. He asked if I had spina bifida, which was rather a personal thing to ask, none of his business and wrong. I explained I had a hip replacement. He then went on to tell me he used to work in a special school with people like me and I was doing really well. I know he meant well, but I found it annoying. Firstly ‘people like me’ just labels me as special needs and does not give me any credit as an individual person. Secondly how does he know I am doing really well? I was in a café with my mum, nothing remarkable in that. What is a disabled person supposed to do? Either I carry on with life like everyone else or roll over and die. I guess I could sit at home all day, everyday and get very depressed and lonely, lamenting woe is me I am disabled or I could go out and have some kind of a life. Also being disabled physically does not make me stupid. The man in the café may have thought I was doing well to be so functioning. Well I chose my own drink, ordered it and paid for it, and do this kind of thing on a regular basis. In fact I live alone and do not have a carer.

The fact he used to work in a special school with that kind of attitude annoyed, but did not surprise me. I spent three years in a special needs school as a teenager and this was something that annoyed me on an almost daily basis, the patronising attitude of some of the staff. I think I may have acted up a little bit less perhaps if the staff had expected more of me. Thankfully my parents were never patronising and never let me use my disability as an excuse to not make an effort or learn things. I can do a lot more for myself now thanks to my parents making me learn than I may have been able to do otherwise had it been left up to school.

The super human Paralympics attitude

I watched the Paralympics opening ceremony earlier this month. I like the Paralympics; they are fun and help promote disabled issues around the world. On phrase I dislike that was also used a lot in the 2012 Paralympics, that disabled athletes are ‘superhuman’. I admit that they achieve some incredible things, but why are they superhuman? Disabled people are only joining in sport like everyone else. Sport for some people seems to be something natural, an instinct, why is it so amazing that a disabled person would also have this? Yes it is often harder for a disabled person to be able to join a sport, but it can be tricky for anyone to join sports, especially at an Olympic level. Sometimes the Paralympics can make it harder for the disabled with people thinking that if the Paralympians can achieve so much why can’t all disabled people. For example someone once said to me that if the disabled athletes can do that, why I can not even get a job. When it comes to work my physical issues are the least of my problems, like all disabled people I have more going on in my life than just my disability. Every four years it is like we are all suddenly expected to be superhuman. Well I will win a Paralympic medal the day all my non-disabled friends win an Olympic medal. Rob Crosan in the Telegraph puts it well, ‘The Chances of most disabled people becoming a world class athlete is roughly the same as it is for able-bodied people (i.e. nil).’

The scrounger on benefits attitude

I would love to have a paying job and not be on benefits, but that does not seem to be an option for me right now. There is only a brief three month period of my life I can remember being totally off any benefits as an a adult when I had part time temp job. I was on job seekers allowance for a number of years before changing to employment support allowance for health reasons. At first on job seekers everyone seemed supportive, but the longer I remained on it the more the support seemed to decline. People who understood my situation less well started to say not very nice things. Apparently I was lazy, not trying hard enough or too fussy about the type of work I would do. If only they knew how hard I was trying to get work, attending interview after interview and getting rejected over and over. I ended up having to remove a couple of people who I thought were friends from social media for saying very negative things about people on benefits.

The media do not help with the scrounger attitude some people have. There are so many newspaper articles about benefits cheats that it must seem to some that the vast majority cheat the system. For example if you type the words disabled or disability into an internet news search, you nearly always get at least one article on someone who has been caught cheating benefits. Yes, a few people do lie and claim benefits falsely, but the vast majority do not. ‘Official data shows that there is nearly twice as much error as fraud in the benefits system’ (www.disabilityrightsuk.org). Less than one percent of people are benefits are said to be fraudulently claiming. The media often muddle up fraud statistics with system errors making the fraud look much worse than it actually is. The government have also made things worse by constantly banging on about cutting disability benefits and catching benefit cheats. However if I was to come off ESA I would have no income coming in at all apart from housing benefit which gets paid straight to my housing association anyway.

I am not a scrounger; I volunteer a lot in my local community. I am not super human, I am rubbish at sport, but I also do not want your sympathy. I am simply me, a human being, but as Penny Pepper writes in the Guardian, ‘It truly seems that the only acceptable disabled person is a Paralympian – and then only for a few weeks’. All disabled people just want to be accepted as themselves and not just during the Paralympics, but all of the time.

References:

Rob Crosan, Telegraph, 15.09.2016
http://www.telegraph.co.uk/men/the-filter/we-disabled-people-arent-super-in-any-way-i-couldnt-care-less-ab/

15.05.2014
http://www.disabilityrightsuk.org/news/2014/may/benefits-fraud-less-one-cent

Penny Pepper, the Guardian, 06.09.2016
https://www.theguardian.com/commentisfree/2016/sep/06/paralympians-superhumans-disabled-people

For the want of a diagnosis

I have been trying to define my mental illness for years.  I decided that I have a combination of mental health and learning disorders that overlap and interfere with each other.  However apart from OCD I do not actually have anything else officially diagnosed in my medical notes as far as I am aware.  I have been told by medical professionals and therapists I clearly have other issues going on, but they have always failed to define exactly what it is I have.  I do not fit the boxes society likes to categorise people into, which is a problem when it comes to certain things.  I seem to have high functioning or borderline conditions that taken separately do not seem that bad, but together make me frankly a mess at times.

One of the hardest things to do when you do not have an officially diagnosed illness or overlapping ones is to fill out a government form.  Recently applying for Employment Support Allowance benefit was very tricky.  I failed a medical assessment as I did not have any medical evidence apart from OCD and I come across as coping quite well when I talk about things.  The initial form and medical seemed to take each issue separately and failed to take into account how my conditions interact with each other.  Luckily at my appeal tribunal they did seem to look at my issues as a combination of things and how they affect me as a whole person.  Also they allowed my key worker at the time to speak up for me and say how it really is, which the initial form had far less room to do.

School was made harder by not having my mental health and learning disorders diagnosed.  If things had been diagnosed they could have gone on my statement of need, which hopefully would have been read by my teachers and then they could have helped me more in the right ways or at least have given me more understanding.  Instead I had a deputy headmaster who told me I was attention seeking and that my crying was crocodile tears.  I think the fact that I am verbally articulate and read and write well contributed to schools not picking up on my issues and suggesting I should be tested for anything.

Getting a job has proved very difficult for me.  Two seasonal part time jobs are the total extent of my paid work history, despite getting many interviews and most of them seeming to go well.  I can not explain my mental health and learning disabilities to potential employers, as I am not exactly sure what to tell them.  It can be hard to explain high functioning; overlapping conditions, even harder when you can’t even put a name to what it is you have exactly.  So my guess is that in interviews I may sometimes come across as a bit odd or different, something employers can’t quite put their finger on seems to be putting them off me.

I have had a few attempts at therapy over the years, but again without knowing exactly what I have it can be hard to get the right help.  I have mainly had Cognitive Behavioural Therapy for my OCD.  Well this has helped a little, it never seems to get past the initial stages before my therapy sessions run out or I hit some other obstacle that makes it difficult.  For a start therapy only seems to deal with one issue at a time, which makes it hard for me.  I try to carry on my therapy at home only to find it triggers other issues I have such as my emotional behavioural problems, so I end up taking out my stress on those around me in anger or crying and getting depressed.  I would like to find some therapy that helps me deal with my issues as a whole taking into account how they interact with each other.  However it seems very hard to get any kind of therapy without named conditions and the types of therapy available on the NHS seem very limited.

Since I started writing this blog progress seems to be happening on trying to diagnose me.  I have an appointment at the autism clinic fairly soon.  The appointment took well over a year to come since being put on the waiting list, which is so long I had almost forgotten I was on the list.  I have wanted to know for certain if I am autistic for many years.  I am pretty sure I have high functioning autism, but an official diagnosis on my medical notes would really help.  It took me changing doctors surgeries and having a mini break down for my mental health issues to be taken seriously for the first time in a long while.  I actually had a mental health assessment with a mental health nurse for the first time as an adult, my last one being when I was about eleven.  She seemed to really understand my issues and made sure that something was done to help me.  I asked if I could have an assessment for autism and she actually said that would be a good idea.  No one in twenty-nine years before that had referred me to the autism clinic despite seeing therapists on and off since I was a teenager and clearly having problems.

I hope to get a definitive diagnosis soon so I can start to make sense of who I am, but also just to make my life that little bit easier when it comes to filling in forms and sorting things out.