“My name is Anne Ali, I have Dermatomyositis, and it is my great honour to give this year’s Iris Hazel Memorial Talk. I am going to talk about studying with the Open University whilst having Myositis.

Just over two years ago, June 25th 2005 was a very special day for me. It was a day that, in a way, I never thought would happen. It was the day I graduated from the Open University with a B.A. Honours Degree.

I had begun studying with the OU before I became ill with Dermatomyositis, and for the first couple of years of having the illness I had no choice but to put studying on the back boiler. However, as soon as the medication kicked in, and I began to feel a little better, I was able to resume my studies.

Studying with the OU is not an easy option in the academic sense – it is a well respected University that is ranked 5th in the latest national table for teaching quality. Nonetheless it is ideal for people such as ourselves with a disability or illness. Most of the studying is done at home, so there is no problem about getting to a campus, and you can choose your studying times to fit in with good and bad days – ideal with Myositis!

Most courses have tutorials and examinations, and foundation courses usually have a one week summer school, but again these are adaptable for your needs. In these days of the internet some courses have computer-conferencing or telephone tutorials rather than face-to-face ones. This often depends on the number of students on the course and where they live, but it could be adapted for our needs. Whilst I was ill I did not attend any tutorials, but I had previously found them helpful.

It is advisable if at all possible to attend summer school as it seems to bring all the threads of your first, foundation, course together (and it is good fun too!). The OU will provide an ‘Assistant’ who is usually a volunteer student and who will help in any way needed. For example, when I was at Keele University for my summer school, before I became ill, there was a girl there who was quadriplegic and who had two assistants who did everything from clean her teeth in the morning to hold her drink in the student’s bar at night!

In their document ‘Meeting Your Needs at Residential School’ the OU states that: “If your medical condition causes fatigue, pain or needs medication your Course Director and tutors should be able to help you find ways to cope with the amount of work….We encourage you to go to the school and to help us work out a strategy that will take account of your condition…” The OU is also very supportive, and bends over backwards to help its undergraduates.

The assistants, as stated before are usually from a pool of Students who volunteer for this task, but it is possible to take a friend or relative with you if you prefer. You may even decide that you do not need an assistant at all, but it would still be advisable to inform the OU of your medical condition.

The good thing about the OU is that it is flexible, so if you need to take a year or two out, that is fine. Even if you begin a year’s studying but then are really too ill to continue that year, there is a possibility that you will be able to recoup at least some of your fees for that year, depending on when you withdraw from the course. You would be able to transfer between 100 – 30% of the course fees to another course depending on when you withdrew.

Courses are available in the following faculties: the Arts, Social Sciences, Science, Education, Health and Social Welfare, Technology, Mathematics and Computing, Business and Management, Modern Languages and even Law. It is possible to graduate with a B.A. degree or a B.Sc., with a mixed bag of courses from the curriculum, or by taking more courses at a higher level, to graduate with a B.A. (Honours) or B.Sc. (Honours). It is also possible to graduate with a named degree, for example B.A. (Honours) History, which has a named list of courses which must be taken to achieve that particular degree.
There are 60 and 30 point courses, each of which is at Level 1. 2 or 3. 5 x 60 point courses or 10 x 30 point courses are needed to gain a degree without honours and for an honours degree, 6 x 60 point or 12 x 30 point courses are needed.

How much study time does it take? Well, the official OU line is that a 30 point course takes 8 hours a week for 9 months, while a 60 point course takes 16 hours a week for 9 months. In reality, especially with an illness like Myositis, this is not the case: for a 30 point course I did sometimes no work at all in one week but with an essay due I probably did more like 16 hours in a week. As long as the work is done there is no one looking over your shoulder.

It is possible for a person who is in full health and who has no other distractions and commitments such as family to complete a degree in 3 years by taking 2 x 60 point courses a year. However the OU do not advise this, and so the minimum it should take for an Honours degree is 6 years, by taking a full course each year. I would suggest that for someone with Myositis, including taking the Foundation Course which is a 60 point course, it should take a minimum of 11 years, taking a 30 point course a year. Of course it is possible to take 60 point courses whilst having Myositis, and also to take 2 x 30 point courses a year but it should be stressed that 2 x 30 point courses usually entail more work that 1 x 60 point course. Personally, I took 19 years, but that includes a few years where I took no courses at all, and, I have to admit, a couple of years where I failed my course!!

Course materials arrive by post just before the start of the course – usually February. Included is printed material, sometimes videos/DVDs/audio tapes or in the case of science subjects experimental materials. A study guide with a calendar setting out when TMAs (Tutor Marked Assignments) are due etc is usually also included. Set books are listed by the course details and need to be bought separately.

A 30 point course will usually have 4 or 5 TMAs, while a 60 point course will have 8. Here is another flexible thing about the OU in that their system of marking means that not all essays need to be passed. The OU uses continuous assessment scores whereby one assignment can be substituted for 30 point courses and 2 assignments for 60 point courses. This means that you do not have to give up the course if too ill to do an assignment. As long as the last TMA is in by the final cut-off date, it is possible to discuss with your Tutor if you are late with any other of the assignments; you can usually have extra time in emergencies.

Courses usually have an examination at the end, but again, if there is a physical problem with taking the exam the OU will do its best to help you. In extreme circumstances they will allow you to take the exam at home with an invigilator.

In general, courses end in October, and the results usually come through the letterbox just before Christmas. Mostly this is a good thing, as a pass adds that extra something to the celebrations, while any sorrows over a fail can be drowned during the festivities! I did sometimes think though that the last thing needed with all the stress of getting things ready for Christmas is the extra worry over that long-awaited envelope landing on the mat.

I did most of my courses on history subjects. The courses I took (and passed!) were: the Arts Foundation Course; 17th Century England; The Enlightenment; Princes and Peoples (which covered the English Civil War); Topics in the History of Mathematics; Art in Italy 1480-1580; Art, Society and Religion; Shakespeare and finally Early Modern Professions, which did not have an examination but ended with a 5,000-6,000 word project, with the subject chosen by the student within the scope of the course. My subject for this was “Judge Jeffries – The Making of the Hanging Judge. Education and Progression in the Legal Profession during the Sixteenth and Seventeenth Centuries”. I can honestly say I really enjoyed myself researching this subject, and was able to do all the research from home, with the help of the internet, and very kind librarians at Shrewsbury and Westminster schools and the Inner Temple.

At the end of this course I had completed everything necessary for my B.A. (Honours) degree, and was over the moon when the forms came through the post to say that I had passed. I was even happier when I received another letter at the end of January stating that I had been selected to receive that year’s Sir John Daniel Prize, which had been established to recognise the achievement of two graduates each year that had completed degree studies under extremely difficult personal circumstances, i.e. that besides having Myositis I was mostly in full-time work, caring for my elderly disabled Mother and bringing up two grandchildren.

I confess that when I first read the letter I assumed that it was yet more information about the ceremony with information that didn’t really concern me personally and it was only when I got down to the paragraph which began “If you would like to accept this prize…” at the bottom of the page that I began to get excited! I had to read it all over again to take it all in. The prize was to be presented by the Chancellor of the OU, Baroness (Betty) Boothroyd.

Sadly, on the day she had a more pressing engagement, but her place was ably taken by Pro-Vice Chancellor Linda Jones. Degree ceremonies take place all over the country, and I had elected to have mine at the Symphony Hall, Birmingham which turned out to be a spectacular venue. Before the ceremony my guests and I were taken to a room on the second floor, I was presented with a cheque and certificate and photographs were taken.

I was then taken to my seat in the hall with the other graduates; we were given slips of paper with our names and award on to hand in on the stage. Everything was taken care of, we graduates did not have to worry about anything – when to go to the stage, how to find our way back, it was all done by stewards who shepherded us around. Just before my turn, I was told to go up to the stage, handed my slip in and heard ‘May I present to you... Anne Ali, B.A. Honours” and off I went across the stage! I shook the Pro-Vice Chancellor’s hand, and I was the only to receive a peck as we had talked upstairs!

Going back to my seat I briefly contemplated forging another slip of paper with my name on it so I could do it all again! It was an excellent ‘high’ and worth everything it had taken to get there.

There were times whilst studying with Myositis when I could not lift a book never mind read it. When the thought of writing an essay seemed even more impossible than it normally does. When I had to make arrangements to do the exam at the Regional Centre on a different day because I was too ill to do it on the specified date. However, with the support of my family and the Open University, I managed to conquer the difficulties and reach my goal – a B.A. Honours degree.

All in all, despite all the hard work and frustrations, regardless of the amount of times I would rather do ANYTHING other than sit down and write an essay, I can honestly say I enjoyed studying with the OU and am contemplating doing a Masters at some stage.

The road to my degree has been long and hard, but in the main enjoyable and ultimately satisfying. I am hoping that, after hearing my story and looking at some of the literature I have brought with me, some of you will be encouraged to start along this path of learning. I can certainly recommend it.”

Anne Ali
Saturday 14th July 2007