I’ve been debating whether to write about this for quite a while, and often held back because there have been times where I felt or was made to feel that I was less of a person for it, that it was a ‘dirty’ word. It’s still something of a habit dying hard with perhaps a hint of shame or embarrassment, as these opening sentences would suggest (if, somehow, you missed the title…). You wouldn’t know it if you looked at me, but I have a learning disability. I wrote more openly about it for the first time this past December, but never told anybody what it is, apart from a few private messages. This post is pretty much slightly edited private messages, and if it seems a little scatterbrained, I’m not sorry. I have dyspraxia.
I made a PIP (Personal Independence Payment) claim this past February, but needed a lot of time to gather screening reports to add to a 40-page form. They received them in May, and although I had reassurances, they told me that they were ‘reviewing my case for extra time’ BEFORE even deciding whether I should have it. As mentioned above, I have dyspraxia, and my disability isn’t so ‘visible’, but I never even knew that I could apply for any such support until the start of this year. I signed at a Job Centre in 2008 (the first of three occasions), after having to suspend my course, and the first thing I told them was that I had learning difficulties, but not one person told me that I could apply for this – These people work for the government, and it’s real bad.
There’s the issue of race too – In my experience, I’ve seen that I’m more likely to be called ‘lazy, aggressive and problematic’ before anybody considers if something could be wrong, or hurting. That was the case at school. I needed more time in class AND with homework, but it wasn’t until late 1997, when I was 15 and about to do my GCSEs that I had my first screening. The screening showed that I have dyspraxia, and I was told I qualified for extra exam time, but I didn’t have a learning plan or anything for homework or coursework. I can remember doing very well in a handful of exams at the end of Year 8, and being put into B-Tier classes. In the A-tier, they taught one of the subjects that I topped the year in. So, my teacher made the case that I should be in the A-tier class, because I would have the chance to do the subjects I excelled at, and that should be encouraged. I never asked him to say a word, and I never complained about being in the B-tier classes. For what it’s worth, I hated the idea of children being divided in this way, and all the cruelty among peers that goes with that. But still, he made the case for me, and I was put in the A-tier classes for the next three years up to my GCSEs. In my year group at the time, I was always made to feel that I had to justify being there. I was frequently bullied in the changing rooms during the weekly sports sessions. It was believed that I chose the subjects I did, so that I would be put in those classes (this case existed because I topped the year – if I hadn’t, and I chose the same subjects, my teacher wouldn’t have recommended it), that I wasn’t ‘bright enough’, that I had to ‘go back to where I came from’, because I was ‘taking someone else’s place’, when the reality was that since my first day in Year 7, when my homework load increased, I wouldn’t need another pair of hands to count the number of days that I had a good night’s sleep. Even accused of copying work on a group task (Where we had to show that we could work together, and our research had to be consistent… Imagine!!), because I used donut charts, the same as one of the girls I worked with, when presenting data on Excel. My end-of-year exams never reflected the whole story because I didn’t have the support in those years, and my school report cards made very frustrating reads, as they were often unsympathetic. One thing that gets ignored in education, the workplace, on social media, and numerous elements of daily life is the fact that having a learning disability doesn’t mean you can’t display above average levels of intelligence. It’s believed that if you do, then there can’t be anything wrong with you, and if you don’t, it’s used as an excuse to call you “stupid”, “lazy”, or whatever the slur of the moment is – Think about that. It’s a “damned whatever you do” situation. Lots of disabilities aren’t “visible”, they affect people differently, and no individual should ever have to be seen on the cusp of death, let alone hurting before they are believed, before they are afforded basic humanity, before others can be understanding, sympathetic and compassionate. Disability and its effects do not present itself in this way a great deal of the time – The idea that it does is an extremely common and dangerous misconception. People don’t consider that to adopt coping mechanisms, to approach things differently, and to adapt in a society which doesn’t care takes great capacity. To this day, I still feel a sadness and resentment towards my old school. There were times when that led to tears, but less so now when I recall it. Just the sadness and resentment.
At Uni, in 2001, when I was 19, I told them on my first day. A second screening followed, and the results showed again that I have dyspraxia. I had extra time, a learning plan and received some equipment to help me with my course – I never got it until the end of the year, and didn’t have a chance to use it with my course. My results suffered, and I had to appeal for a second chance. I lost a year in the process, and took on more hours in my part-time job. I was given a second chance, but my laptop broke down, and when I reported it, no action was taken – I have this in writing from the Disability Support Office. I had to leave my job too because the hours weren’t suitable at that time. I had an offer for another job from a popular department store, and a contract delivered in the post, but I was screwed over, because they called to tell me the job was given to someone else. So, I had course trouble, no job, and no action taken to help. My results suffered again, and I was withdrawn from my course. I appealed again and lost. At that point, I was over 18, but nobody told me that I could apply for any of this. I think it had another name, but had I known, It would’ve helped me a lot. For a start, I wouldn’t have had to worry about not having a job, and coped better on my course. Getting interviews, let alone a job has always been a nightmare for me. Between jobs, even back then, I had long spells without work. I pursued higher education in the hope of improving my prospects, but never had a fair and honest chance. My life since 2004 has been a couple of part-time retail jobs, trying and failing again to complete a degree without support in my final year, illness, job rejections, soul-destroying visits to the Job Centre, and strains on family, friends and relationships. I wrote about some of my experience at the end of last year, but sometimes I think “I’m 34 now. I had a right to this help for at least 16 years, almost half my life. My youth. I’ll never get these years back”.
After 8 months, I finally got to do a PIP consultation on an early Monday morning this past October. I hadn’t spoken to anybody about it, and it was very distressing. I didn’t know the place I was going to, and there were no buses from my neck of the woods going near there. So, I had to take a taxi. Funny that these places are always difficult to reach, and people without work have to burn holes in their pockets to get there… I was late, but I had mentioned in my claim that I needed the time. It was with Atos, and I left with the impression that my claim would be dismissed – That happened with an ESA assessment, although I had two lengthy screening reports and lots of evidence from my years in (higher) education, and a recommendation from the Job Centre. I was told that I would have to wait for 4-8 weeks for a decision, but that letter came two weeks later, on a Saturday. My claim was dismissed, and they gave me zero points. I soon realised that the whole process of applying for PIP is set up for people to fail. It disregards the evidence of doctors and educational specialists, it doesn’t make the time, price or quality of life connection, and you’re made to wait 16 weeks for a consultation, THEN anything up to a further 8 weeks for a verdict. Some applications take even longer. For context, a Job Seekers Allowance claim can be made, and you can be in a Job Centre within a fortnight – If you’re looking for work, then politicians of various persuasions want to be seen as your ‘saviours’, and they’ll use you as a prop to manipulate their employment statistics. But if you have a disability, let alone one that isn’t easily seen, your needs aren’t treated with any sense of urgency at all, and there is no consideration for how you might be affected in the workplace – In fact, disclosing your disability in job applications is discouraged, further highlighting how fucked-up the world we live in is. The worst is assumed, that there’s nothing ‘really wrong’, and that you don’t need any support or help. You’re treated as less. I feel emotionally battered. People can’t ‘see’ dyspraxia, and just because I’ve had to adopt coping mechanisms, it doesn’t mean I’m dealing with it well, or that others around me don’t need to try or adapt, or that I don’t need help. It doesn’t mean that I’m not hurting. Right now, I’m alone, my brother has his own stuff to worry about, and there are going to be long stretches of time where I’ll be lonely between now and the Summer of 2017.
I have spoken briefly on a couple of occasions with my GP, and now, he has it on my record, but I haven’t gone to see him about it over the years, which makes sense because a)There is no ‘cure’, b)I had adopted coping mechanisms, and c)when I first had a screening at 15, my teachers weren’t familiar with dyspraxia at all – In fact, when I write the word on here, it shows a red line under it!! When I first Googled it, I learned that it used to be called “Clumsy Child Syndrome”. Imagine knowing that, knowing how cruel kids and your peers can be, how bad it can get in a workplace, and a widowed parent never fully understanding, however well-placed her heart is, a younger brother who you were protective of because you were the older one, and in some places, it’s expected. Imagine in some ways, becoming “man of the house” when you were still a child yourself, and it’s totally reasonable to believe that you could live life suffering silently. Putting others first because you’re caught in the middle, or because they don’t understand the depth of your hell, knowing it’s a thankless virtue a lot of the time, knowing they’ll never fully adapt or accomodate, not expecting them to, because you feel that you’re a burden. But you take that path, anyway, because they’re still the only people you REALLY have, or because it’s important to hold each other up, and the thought of them being sad saddens you, too. Smiling through the so-called little things which frustrate you. For example, I have a good long-term memory, but my short term memory can be terrible. As a child, I could remember going upstairs to grab something, like a notebook. I get to the landing, pace around for 30 seconds, then shout “Mum, I can’t find it!!”. She’ll reply “My notebook”. I pick it up, and bring it to her. But during that entire sequence of events, I never specified what “it” was, because of the embarrassment I felt at forgetting. In class, I was the guy who put up his hand because he didn’t understand – the school report cards I mentioned implied that I didn’t listen. But ask me about an event from years ago, and I can recall it like yesterday, even the ‘trivial’ details. Does any of this make sense? Perhaps not for a lot of people. Do I sound dramatic here? Well, I was told that recently, too. But it’s real. When the people you’ve known see you at 34, stuck in a place through no fault of your own, and you don’t feel you’re where you need to be or want to be in life, and you know why, but can’t explain it to them because you don’t know how, where to start, or if they could understand, it’s a rotten existence… and that’s what I’ve been doing all this time. Existing. Sometimes I feel that I don’t deserve to. Other times, hearing nothing, not even a reply of rejection for work reminds me that I’m already dead in the eyes of many people.
I don’t even know if I can appeal, or go through even more months of this. They asked me to do pretty much the same tests I did for ESA. Make a fist, stretch hands out, etc. – It’s a one-size-fits-all test, and NONE of that can tell anybody anything about my dyspraxia. I mean, they completely ignored about 60 pages of reports, AND what I wrote in my application, then they ignored that even Job Centre advisers said I was on the wrong allowance. Literally people in their own machine acknowledging that I was having a hard time, and why, but it’s always faceless “decision makers”. I’ve heard stories about Atos, and know they can be vile. I’m sure people have had help for dyspraxia, but it wouldn’t surprise me if the DWP don’t see it as a ‘real’ disability (I hate that term, and don’t know what word to use here).
Since leaving education, I haven’t had any real structure to my day or week. I still need more time. I carry yesterday’s exhaustion into today, and still, others around me aren’t so accommodating. I’m still having to adopt coping mechanisms and not talk about the personal hell and effects of my dyspraxia. It’s a condition that has no ‘cure’. It’s something I’m going to die with. Now that they’ve rejected it, I don’t know where to turn to or what to do. Sorry to go on, and thanks for reading. It’s been on my mind a lot recently, and I’ve cried myself to sleep sometimes.
x Love J