Open University and Disabled Students - Research needed

I have spent 6 years trying to get my degree. At every turn my illness has thwarted my attempts. I am, if not modest, a very high achieving student and my academic capabilities have never been the problem.

I was studying at Cardiff University but after a bad relapse I had to leave and resumed my studies with the Open University. I assumed it would be an institution, because of the kind of study it offers, that was sensitive to the needs of students with disabilities but I have been appalled by what I have found and have now reached an upsetting juncture at which I may have to take legal action against them.

they never sent me the exam for my latin course and failed me for the whole course - they will neither send me an exam now or admit there could be a small chance they were in the wrong. in the most basic sense they are breaking the contract of me buying goods from them and them not delivering the goods as they technically never gave me a way to finish the course. they now wont take my calls. i just want to take the exam and finish the module. it's upsetting me so much and driving me mad. Has anyone else heard of similar experiences and what do you recommend I try next?

Nanny State - i Wish!

It is a tricky subject, benefits. Firstly I am loathe to have to be on them and feel embarrassed, ashamed and guilty. Secondly, the government makes it harder and harder for disabled people to receive their benefits and easier and easier for the jobless to receive theirs.

Many sufferers of ME have been victims to cuts in their benefits this year. My mother had to take my case to an appeals court to battle to keep mine. When she got there, the judge told her the local council should be ashamed of themselves for what they were putting us through and that it was a disgrace how disabled people throughout England and Wales are being made to feel like they have no right to an independent life.

I work part time and have so many aims and goals for a career. I continually try to get closer to these dreams. It has taken me over 6 years to get a degree whilst working part time from home. I would not be able to work was I not able to do my job from bed at home as my job is an internet based role with very flexible working hours. If I didn't have this unique job, no other exists that I could undertake reliably. Some employers are being forced to be more understanding to disabled people's needs and charities like SCOPE are doing great work to spread awareness of how companies can be more diverse and accommodating, but despite this the unpredictability of ME makes working very difficult unless you work for yourself or a very small company. Full time is beyond reach for most patients and part time jobs that are not just casual work can be hard to find.

There is so much to say on this subject. so  much research, so many statistics.

I have to rely on my wonderful mother to help me with my benefits. I am too ill to sort them out myself. Every other month there is some sort of problem with my DLA *Disabled Living Allowance*. I am accused of supplying incorrect information, their calculations are often incorrect, getting council tax exemption is a minefield. It is degrading. I'm not work shy. I'm disabled. Some civil servant decided that claimants suffering from ME were probably all faking it - the clamp down on benefits for ME sufferers has been universally severe and unjust. In the act of taking benefits away from people with ME the government is sending out the message that the illness is not a real medical condition but that we are a group of people who just need a gentle 'nudge' in the right direction.

I live in constant gratitude for the work my Mum does to help me through this disease, but simultaneousy wish  deeply that she didn't have to do it

Cripple!

Last week I went to a gig with my darling fiance, let's call him J. I am shuffling around with the aid of a stick at the moment and needed to find a chair once inside. Obviously these are not ideal gig-going circumstances - especially for a sold out venue as I spent most of the set staring at the back of people's heads as they were thrown around with the great abandon of rock and roll. My problem is that when I book tickets to these things my mind is often a little over enthusiastic about my capabilities.

My fiance, whilst being lovely, has a penchant for causing a sensation by playing to other peoples' prejudices and sense of political correctness. This has caused many an awkward moment when he, being part Indian himself, has probed a little too deeply into others' sense of right and wrong surrounding racial slurs! This means that he relishes, a little too much, the opportunity to do the same when it comes to disability. This gig was a prime and humorous example. When there was a crush to vacate the packed building after the gig, J rushed ahead of me like a human battering ram and jubilantly shouted "Cripple coming through! Make way for the cripple!" Demonically throwing a cheeky smile back towards me as many of our fellow gig-goers scattered and stared,  not knowing whether to obey or argue the orders.

Five years ago I somehow endured a course at university in Cultural Criticism. This was a mulch of critical theory, gender studies, and all things politically correct. It was agony, and I am not sure what drives anyone to teach a room full of 18 year olds a subject that encourages them to talk about 'identity'. Blah! what it did encourage me to do, however, was to consider the post-modern jubilant redefinition of prejudicial slurs for minority groups, and led me to enjoy, childishly, 'shocking' people with my use of terms usually negatively associated with disability.

It is a infantile and perhaps seemingly silly pleasure, but beneath lies a serious issue of semiotics and the cultural meaning assigned to words and the questions of how these meanings and attitudes can, if ever, be changed and challenged.

MEAW - ME Awareness Week

It always creeps up on me and catches me unaware... like water bills and smear tests... and I never learn from my past mistakes. Yes everyone, I have once again forgotten to prepare properly any kind of fund-raising for ME awareness week this year. It takes place from 8-16th May (yes that is next week, and yes I really am that behind in my organisation). I was only reminded of it yesterday and since then have been tweeting and facebooking wildly to let everyone know how to get involved with 'ahem' other people's valiant efforts to fund-raise for this important and overlooked event. The irony of the situation doesn't escape me. I am one such person who overlooks ME awareness week and yet I am someone who should really be behind it, who needs it to be successful, but that is one of the key problems with ME awareness and fund-raising efforts. Sufferers are too tired to get involved, and their families too busy and exhausted caring for them. When we are enjoying better periods, or if we manage to shake the illness permanently, we often don't want to jinx it by getting back into that 'ill' frame of mind and fight, as we should, against prejudice and for research into our disease. Perhaps one of the problems or kinks in the process is that ME isn't fatal. Unlike families battling for cancer research etc we are not fighting to save our lives, just our quality of life. This disease makes our lives a living hell - physically and mentally,  and so perhaps like sufferers of PTSD we want to forget about it all whenever we can. Sadly this can lead to some oversights in how we should be supporting each other and really pushing for further research and medical help.

So, this ME week, belated as it may be, please get involved... if only by educating yourself a little better about the disease.

Alternatively, visit www.ayme.org.uk for fundraising events and links to research campaigns that need your support.