Its A Tough Time For Me

As I sit and write this I struggle somewhat with how to start, in truth it has been an incredibly difficult few weeks for me on all kinds of levels.

For starters University is not going well, it’s not the fault of any individuals but in short I am not getting the disability support I need to be able to keep up with my able bodied peers.

Books are inaccessible, I can’t even find the books I need to look at in the library independently let alone read them.

I have library support time where support workers help me find the materials I need and the read the relevent content which I record as audio compleate with page numbers and all the referencing data one could ever need. From these audio recordings I can then make my own notes, copy down quotes word for word and complete my essays and other research just as well as any other student.

The current problem being that unfortunately The University’s disability support team are massively over stretched, understaffed and struggling to meet the demand.

I have in the last few weeks only been getting one or two hours a week of this reading support which has meant that I am seriously struggling to keep up with my workload in a big way. My lecturers are understandably concerned about my progress and my ability to cope alongside my peers and the whole situation is just leaving me incredibly stressed!

Aside from the academic problems I continue to have serious issues with where I am living, unfortunately for me I am in first year halls even though I am in my second year.

The freshers I live with are phenomenally selfish and have all year caused problems for Gus and myself. There have been weeks during this academic year where they have literally partied every night until around three maybe four in the morning. When they finally come home they are completely out of their minds on alcohol and who knows what else screaming their heads off. That’s not to mention the many times I have left my room to walk down the corridor only to trip over some shoes or another object that has just been left in the middle of the corridor or worst still discovered that they have broken a glass and not made any attempt to clean it up!

Recently things got to the point where they were finally given their final warning about the noise they make. Since this has happened things have improved slightly but I am still regularly kept awake at night.

Only being able to sleep for a few hours has a serious impact on my ability to function, I will be the first to admit that I need a lot of sleep to function normally and if I don’t get it I can struggle with even the most basic of tasks. A three-hour session on public relations is a serious test of my ability to stay focused after such a terrible nights sleep. I worry that the lecturers see me yawning my head off in sessions and think I am really bored or that I have been out partying all night when in fact I have been in halls tucked up in bed attempting to sleep through a heard of elephants running around the corridors slamming doors, playing loud music and screaming there heads off.

Last week things got particularly bad the freshers where having a loud evening and I had already called security earlier on in the evening who had ask the freashers to keep the noise down. It got to half past twelve and there were a group of them congregating outside my door already drunk making a right racket. I had had enough so poked my head out of my door in my PJ’s with no glasses on to explain that I had a nine o’clock lecture in the morning and that I needed to get some sleep. I then got what can only be described as verbal abuse back, very personally aimed around my disability. It’s nothing I have not heard a million and one times before, I reported the issue and it has been dealt with very seriously so I at least feel like I have closure on that particular matter.

Somewhat unsurprisingly considering all the stress I have been under I developed a virus that I have really been struggling with in the last week mainly I have just been rather nauseous but it has had one slightly more unusual twist. It caused me to break out in very bad hives, the skin on pretty most of my body turned bright red puffed out and developed little bumps that almost looked like insect bites. By far the worst part of this was the incredibly intense itching. It is incredibly hard to concentrate on Harbermas’ theory of the ‘public sphere’ when all your mind is really thinking about is how much you would like to rip off your skin in the hope that having no skin would help the itching – of course this is totally irrational! I can however draw a line under the whole affair as yesterday I saw a very nice doctor who gave me a very strong prescription for some antihistamine which has totally cured me and for this I am incredibly grateful.

As well as all of the above my life has run very far from smoothly, Gus and I had a serious incident that had the potential to end his career as a guide dog, luckily as of yesterday this is all sorted now and Gus will all being well continue to be my guide dog for a long time to come. Gus was also ill for a week with various infections, he had to have a week of very light work and was utterly miserable but is now once again fighting fit.

The relationship I was in has ended, we still intend to stay friends as we are already booked in to see Jon Bon Jovi at Wembley Arena in the summer and as we play on the same cricket team.

I am once again having pretty serious issue with my shoulder from September to January I was undergoing physio. I have now been booted out by the physio department for missing an appointment. It was totally out of my control as I had a really bad fall and could barley walk let alone trek for 30 minutes to get to the appointment, but rules are rules. Honestly in my opinion the physiotherapy was doing my shoulder absolutely no good whatsoever, I spent an age every morning and evening making sure I did my exercises to no avail. If anything my shoulder is currently worse than it ever was, nerves are being pinched which is as painful as it sounds.

So all in all I have had a very rough time of it all recently and in truth it has seriously got me down, there has literally been one problem after another and I am just hoping everything will turn out ok in the end. I am incredibly stressed which does not help matters one bit so I am trying to remain calm and not let the world around me bother me too much!

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BBC – Ouch! – Best days of your life?

BBC – Ouch! (disability) – Opinion – Best days of your life?.

School – for me it was not the happiest days of my life, in primary school I was isolated and ignored by my class mates, I had no friends was often bulled and did not have enough support for me to be able to access everything that went on in class.

Secondary school saw me make friends who accepted me for who I was, I had about 10 or so friends. The rest of the school saw me as an easy target and I was bullied, abused  and assaulted. As if that wasn’t all bad enough I had the teachers to deal with and the stigma of having an adult sat next to me in every class.

Then there where all the little problems that come up in class, having someone read to you in a room that is silent, having to sit right in front of the video to try and see it, missing out on posters, news and important events thanks to not being able to see them.

College was supposed to get better and at first support wise everything was a lot better I had more choice as to when I did and didn’t want support, but there where serious issues with members of staff. One such member of staff did not treat me well as a result of my disability, it was constant verbal abuse, that has damaged me forever.

College also saw my isolation return, for the first 2 years at college most days I had one of my best friends to keep me company at break and lunch times. By my third year I spent all breaks and lunchtimes either sat in the library, wandering around the campus in circuits or I just left and went for a walk.

It’s actually painful writing this post, there are many events during my education what I simply cannot write about, I have kept this post to the bare minimum but at the same time I feel I  have to convey what as a disabled kid I went through and now I feel thoroughly depressed!

BBC NEWS | Health | System ‘failing autistic adults’

BBC NEWS | Health | System ‘failing autistic adults’.

It’s sad but a very true story that many people are struggling to live with autistic spectrum disorders they don’t know they have.

I personally have a friend who has recently found out that 10 years ago she was wrongly diognosed with Bipolar disorder and placed on a cocktail of drugs to ‘normalise’ her moods. This combination of drugs taken for so long has damaged her body to the point where she had to stop taking them (fully supported by a mental health team and her family).

Since coming off the medication she has been diagnosed as having Asperges and it is very unlikely she ever had Bipolar disorder!

Better Teaching for disabled kids

Teaching children with profound and multiple learning difficulties (PMLD) | Education | The Guardian .

 

Although this artical focus’s on childrens services for children and young adults with PMLD, it throws up a wider issue.

Teachers are not getting enough education to enable them to effectivly teach people of all ages who are disabled.

I have lots of living proof of that in action at all levels of my education.

Often, right through from infant school to university I have been disadvantaged and not allowed to fulfil my full potential because of teaching that is not inclusive.