Archives

Being on benefits is not a life style choice

I am fed up with the ignorant and rude comments made about people on benefits.  I would like to say what it is really like to live on benefits.

  • When people describe it as ‘choosing to live off the government’, I would like to point out for most people it was not a choice.  I did not sit in school and think; when I grow up I want to live on benefits.  I had dreams and ambitions the same as most young people do.
  • Being on benefits does not automatically make me a lazy person.  I volunteer for three local good causes and try to be an active part of my local community.
  • I am not on befits because I am stupid.  I have various qualifications including a degree.
  • When people say ‘just get a job’ they have no idea how long and hard I tried to get a job.  I spent years applying for work and went to lots of interviews.  I tried really hard at every interview to get the job. 
  • I did not ‘turn down perfectly OK work as beneath me’.  I had an interview at McDonalds, they were the ones to turn me down and I would have willingly taken the job.   
  • Some people on benefits are simply too ill or disabled to work.  They are not lazy; they just know their limitations and know that they would actually be unable to fulfill most job roles to any satisfactory level. 
  • Not everyone on benefits is an addict on illegal drugs or an alcoholic.  I have never taken illegal substances and am not a heavy drinker.  Hardly anyone I know on benefits is an addict.
  • Getting benefits is not as easy as some people think it is.  Claim forms are tricky to even fill in.  Firstly you need internet access these days to get most kinds of benefits which for some people is not always easy.  Secondly the forms are often long and confusing.  If you cannot read or write well they are difficult.  Yes you can get help to fill in a claim from charities, but you often have to be able to get to them and have limited time with them.  You often need proof of certain things which can be hard to get sometimes.  Then they keep changing the rules on who can claim what and how, making it even more confusing.
  • Some people make out immigrants often come here just to live of benefits and can claim them almost as soon as they enter the country.  This is simply not the case as the Full Fact charity explain ‘Most non-EU nationals who are subject to immigration control are not allowed access to “public funds” (such as jobseekers’ allowance or tax credits), although they can use public services like the NHS and education.’  The rules on what immigrants can claim in benefits are complicated, and not as simple as turning up and filling in a form as this article explains https://fullfact.org/immigration/migration-and-welfare-benefits/  
  • Then there are sickness benefits.  On Employment and Support Allowance or Personal Independents Payments you have to have a medical assessment, which is not always easy, without someone with me I would have struggled to find the place it was held.  An awful lot of people fail these medicals, even those who are obviously very sick.  I failed my medical and had to appeal, which meant going to court.  Yes I had to go to an actual court, with a judge and a full on hearing.  This process can be scary, intimidating and somewhat embarrassing.  I had to listen to my support worker list the ways I failed at being an adult, which was not easy to hear, although I know she did it for the right reasons.  Not everyone even has support when they go through this process which must be really scary and I am not sure if I would another time as I no longer have a support worker.
  • I have had people say I should be working and not on sickness benefits because someone else they know who has the same condition as me is working.  Every disability and illness will affect the person with it differently to the next person.  Maybe if I only had that one condition I would be working, but like a lot of people I have a few different things which combine to make it harder.  Some might have had a lucky break finding an employer willing to hire someone disabled or sick, but not every employer is willing to deal with someone who may need more support and time off than the average employee. 
  • People who threaten those on sickness benefits with reporting them to the DWP as they seem perfectly fit and able to work need to mind their own business.  That person may not leave the house on a bad day, so you only see them on a good day when they are able to do more.  They may also only be going out as they simply have to and once they get home again may end up in bed for the next few hours recovering.  My mental health fluctuates and I do not always know if I am going to be able to get out the next day, so holding down a job full time would be very hard.  When people do not fit the stereotype idea of disabled it can result in being judged as a benefit cheat by others which is rarely the case.  
  • Being on benefits does not mean I should never have a night out or go and enjoy myself in some way.  Sick and disabled people can leave the house for more than just hospital appointments.  If I did not get out and socialise I would end up more ill physically and mentally, and then cost society more as a bigger drain on the NHS.  
  • The assumption can be that benefits should only pay for the bare essentials such as food and utility bills, and if I have anything more I must be getting far too much money.  Some people do only get benefits that cover the bare essentials, and sometimes not even that, hence the rise in food banks.  However I live alone and do not have any children so my day to day living costs can be kept quite minimal.  I am careful with money and so can afford to have some social outings and nights out now and then and can afford to have some nice things in my flat.  Besides, a lot of my nicer things are second hand from charity shops or things family no longer wanted, or gifts for birthdays or Christmas.  
  • Some people who judge others for being on benefits may be on benefits themselves but not realise it.  Things like Working Tax Credits, Cold Weather payments and even state pensions are technically a benefit.
  • The stigma of being on benefits is enough to put some people off claiming what they could and only doing so when totally desperate, by which point it might be they left it so long they have made their health worse or ended up in debt.  The nasty comments and societies attitude are putting some people at risk.

The demonising of those on benefits needs to stop.  I am sure a few do cheat the benefits system, but it is a teeny, tiny minority and most are just trying to survive.  Until you have lived on benefits for a while, try not to judge what you do not really know.  Bear in mind the phrase there but for the grace of God go you or I.  Most people are one accident or illness or job redundancy away from needing to claim them. 

Advertisements

A Paperless Internet Soceity- are we pricing the poor out of modern life?

Last summer for about two weeks or so, I had major issues trying to get on the internet.  Trying to get technology to actually let me online was proving very tricky.  Firstly my mobile phone decided to stop working properly on Facebook, not allowing me to comment on anything or ‘like’ anything.  Slowly more and more Facebook functions died.  For someone who volunteers to help two local charities run their Facebook pages, this was a problem.  I knew I needed a new phone; it was about five years old and slowing down.  So I was using my local library computers, however they started to have their own issues.  Being networked when one computer goes wrong they all start to go wrong.  For most of the summer only about half the computers in the library worked and during this two week period, none decided to work at all.  So I went to use my laptop at my parent’s house, where I often go as they have Wi-Fi and I do not.  That was when my parent’s internet and my laptop stopped communicating.  So my mum said I could use her PC instead, but it was clearly not a fault with my laptop, as her computer could also not get any Wi-Fi signal.  For some reason my mum’s tablet could get online, so I managed a few of the more important tasks on that.  I managed to get my internet issues sorted out eventually, but it got me thinking about how so much of modern life relies on being able to get online. 

I love the internet; it helps me as an autistic person to communicate with others better and to feel connected to the world.  However I can see that it is becoming an issue how so many of our services and day to day functions rely on being online.  I do not have internet in my flat.  Any half decent connection requires a land line, which I also do not have.  So I would have to pay line rental and then broadband costs on top of that.  I live on benefits, which gives me a rather limited budget and Wi-Fi in my flat would eat a significant chunk of that budget every month.  I have managed by using phone data or Wi-Fi elsewhere, but society seems to revolve around the assumption everyone has good internet access.  Job searching requires internet, as does applying for benefits, which means people out of work have to find a way online.  I suspect this contributes to a significant number of people ending up in debt, having expensive phone contracts or taking out loans to pay for broadband. 

News articles come up fairly regularly about internet access and the government role out of broadband so everyone is connected even in rural areas.  They often mention internet speeds, but they hardly ever mention cost.  They talk as if broadband is free, when in fact it can be pretty expensive.  They can install as many fibre-optic broadband cables as they like, but without the means to pay for it or find it elsewhere it is always going to be hard for some people to get online.      

It was not so bad when every town had libraries with computer access to get online, but libraries have now had significant budget cuts and some have reduced opening hours a lot or closed altogether.  When I was on job seekers benefit, the staff at the job centre told us to use the library to get online if we had no internet at home, but if the opening hours are cut drastically there will be a higher demand for computers when they are open, meaning people may struggle to find a computer that is available.  Internet cafes are also increasingly rare now, with most cafes having free Wi-Fi instead, relying on you having a mobile phone or tablet to use it on.

Even if you have internet access it can go wrong and stop working.  On those occasions if you need to get in contact with someone it helps if you can still ring them or fill in a paper form instead.  However more and more companies and services seem to be online only now.  A lot of offices are now going paper free, with the claim that is to save the environment and to make accessing things like files and forms easier.  This is especially the case with a lot of government services such as applying for benefits and housing.  This can work very well, till you find you have no way to get online!

There are charities who try to help with internet access with free computer use or helping you to fill a form in online.  However the computer use is often limited to what the charity is set up to support with, such as a housing charity only letting you on housing based support sites.  My local council have free computer access in reception, but the computers are locked to certain websites such as the DWP to apply for benefits, Devon Home Choice to apply for housing, CAB charity and that kind of thing. 

Another issue can be the equipment you access the internet on.  Be it by laptop, tablet, phone or PC, they all have the potential to go wrong and break down.  Some seem to only last a few years before they die altogether or need upgrading to work with current apps and certain websites.  It is hard to keep upgrading your electronics on a budget.  I am lucky that I got my latest phone as a part birthday gift from my family with me paying for some of it myself.  Not everyone is this lucky.  The poorest people, unless they want to end up in debt can be priced out of an increasingly paperless society.

Why did I even bother to be diagnosed at all?

I was diagnosed as Aspergers Autistic aged thirty-one. A few people asked my why I needed or wanted to be diagnosed at that age, what difference could it make to my life now I had already got that far into adulthood? Well…

It was a relief to have the diagnosis. I had suspected I was autistic for some years and my mum had been reading up on it when I was a teenager. She knew there was something different with my brain, I was just so unlike others. Having suspected it for years it confirmed things for me and my family. It proves what I thought about myself which was I can not help being the way that I am sometimes. Also confirming the type of autism gave me a clearer idea of things.

Having an explanation for being slightly different or awkward really helps at times. I have been called selfish, attention seeking and rude by numerous people over the years when I am actually trying my hardest to fit in and do not mean to appear that way at all. Even worse is when people accuse me of these things when I am really struggling and having a melt down. Saying such things will often just prolong the melt down or makes me more likely to have another one. At least now I can say I am autistic and am trying my best, please try to be understanding. Being autistic is not an excuse to get your own way or to knowingly be rude to someone, but when I do not mean to be it helps to explain things to people. If someone then says I can not possibly be autistic, as has happened in the past, I can now say I have been officially diagnosed by professionals.

Being diagnosed officially helps when claiming benefits. Getting Employment Support Allowance and other benefits is often hard and saying you suspect you have a condition does not count, you need a professional diagnosis in your notes. Last time I was assessed it was tricky to prove my need for ESA when I was yet to be tested for autism. I had a support worker who stood up for me which helped a great deal, but I no longer have a support worker so if my claim comes up for assessment again I will need this diagnosis more than ever.

I now feel more justified spending time researching Aspergers and autism. I can find other people with autism who I can identify with at least in part and say me too, helping me feel less of an outsider.

If you spent your entire childhood and youth feeling different and like you did not fit in would you not want to confirm why this was? For my own peace of mind I needed to know for sure.

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.

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.

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.