III. My Experiences Within the Academy

Partly due to the lack of realisation on my part that I was disabled, the effects of this on my relationship with the academy took some time to become apparent to me. Due to my M.A. being part-time and by independent study, I was not required to negotiate regular access to the University of East London where I was registered. This was fortunate, since the University was a multi-site establishment with no site particularly close to an underground station or bus stop, while its history as a collection of variously colleges, a Victorian elementary school and a cigarette factory meant that most of the buildings were old and poorly converted. When I did visit the University, I was therefore forced to pay for a taxi, or to arrange to visit at a time which was convenient for my partner to accompany me. In practice, I was also unable to use the library, and in general was isolated from the University. However, isolation was a common experience amongst part-time independent study students as the University was not organised to meet our needs, so at that time I saw my student status rather than being disabled as the over-riding factor.

After completing my M.A. and realising that my career plans would have to change because of my impairment, I decided to study full-time for a PhD in the summer of 1992. I therefore applied to a number of different universities, both within London (where I am based permanently) and within commuting distance of the city. One of the reasons why I eventually accepted an offer from the University of Kent at Canterbury was the fact that I was interviewed by a disabled lecturer who used a wheelchair. This, I felt, indicated that the University was sensitive to the needs of disabled people, and this impression was reinforced by the fact that we discussed my impairment and my needs at the interview. However, when I arrived at the University, I found that the reality was rather different - although I am sure that I would have had similar or even less positive experiences at many if not all of the other universities to which I applied.

As a sixties university, the Kent campus was designed on the assumption that the students - and presumably the lecturers - were young, fit and mobile. When I had accepted the place, I understood that I would be based in the same college as the lecturer who had interviewed me and the head of my school. In fact, I was placed in a college at the other end of the campus (UKC is a campus-based university, with four colleges stretching the length of the site). Unfortunately there was only one bus stop at the University, which was next to the college where I was interviewed but a considerable distance away from my own college. As I was unable to carry much or to walk for any distance, this meant that I had to pay for taxis to transfer me to and from the station and the University rather than being able to catch the bus, almost doubling my travel costs. (In fairness to the staff, on the first day my head of school drove me to the station, as well as helping later with occasional lifts.)

While on the campus, I was unable to move easily between buildings. Within the buildings, connecting doors were very heavy and difficult to open, while the chairs provided in seminar rooms were of moulded plastic and very uncomfortable. There were no lifts in the colleges, although the buildings were up to three storeys high. And while lifts were available in the library, the doors had to be opened manually and were so heavy that I had to ask for assistance from the porters (who were usually extremely helpful) in order to use them. Library lockers, which, given the size of the library and the security risks, were essential for anyone who was unable to carry bags and piles of books, had to be paid for (this was not the case in my previous universities). And there seemed to be a general lack of awareness of health and safety issues; for example, the rooms containing the school's computer and digital imaging equipment were poorly equipped and laid out, contravening the health and safety legislation described in Health & Safety in the Non-Linear Environment.

However, despite these problems I was initially able to participate in University life, becoming active in the Postgraduate Society and being elected as postgraduate representative on the University Senate, a position which I held for two years. I settled quickly into my college and became on good terms with the Master, and helped to organise events during the college "week" at the beginning of my third term. I also attended seminars organised both by my own school and the Women's Studies department. And, to help to solve my transport problem, I learnt to drive and passed a disabled driving test, with the intention of borrowing my partner's car. Secure in my new identity as a disabled person, I felt that my impairment was no barrier to my successful integration into academic life.

By my second year, though, problems were becoming apparent to me. My personal contacts remained few - although the support which I did receive from these people was invaluable - and I was becoming aware that my disability created a social barrier. Robert Murphy notes that in fact:

As I was soon to learn, this means that to be disabled is to experience widespread social rejection. Jenny Morris underlines that: "The rejection which disabled people experience is a form of emotional abuse", and this meant that the experience was (and continues to be) distressing. However, I did not know who to turn to for support, although I felt in great need of it.; the lecturer who had interviewed me was on study leave, so I was unable to contact him for help. (Later I came to understand more about his own difficulties on campus, and learned not to make too many assumptions based on the presence of visible disabled people within the academy.)

In terms of practical problems, the locks were removed from the women's lockers in my college over the summer holiday following my first year and were not replaced. The college dining hall operated a canteen system which necessitated queueing - often for considerable periods - while holding a tray, and I was unable to manage this if I had to carry a coat and bag as well. In my first year I had therefore depended on storing my possessions in my locker while I ate. Without a locker, and therefore without lunch - I was unable to carry a packed lunch in addition to my files - I was prevented from attending the University for a full day. By the following term, the lockers were still lock-less. And although I now had a driving licence and access to a car, I was unable to make use of these without gaining permission to park in the college car park. (This was restricted to staff members, while the student car park was even further away than the bus stop.) I was theoretically entitled to a staff parking permit as a result of my disability, but two terms after applying for one, I had yet to receive it.

It was in my second year, too, that I received the sclerosant injections which aggravated my impairment. I therefore found it increasingly difficult to cope with the plastic chairs provided within seminar rooms, since my pain increased the longer that I sat on them. I was, too, finding it increasingly difficult to cope financially. I had twice been turned down for a grant, while my widowed mother had retired without a pension and my partner's business had collapsed. Although I was working professionally alongside my academic work, this was becoming increasingly difficult. In addition, I needed to buy computer and video equipment in order to continue with my research, since the University's equipment was both unsuitable and inadequate for my needs.

In March 1994 I therefore approached the college Master for advice. Was there anything which could be done to speed up the parking permit? When would the lockers be fitted with new locks? Would it be possible to have access to a more suitable chair when attending seminars? Was there any financial support available for disabled students? Was there somewhere I could go to obtain advice about disability issues? I was surprised to be told that there was a disability adviser within the college, since in eighteen months at the University I had heard no mention of this service. I assumed that this was simply due to poor communication, though, it seemed to me to be quite proper that a system of help should be in place and that the University would support my needs in order to allow me to continue with my research.

I was told that the adviser would contact me that afternoon, but in fact it was three weeks before I received a phone call from someone describing herself as "the adviser to the handicapped". I was very taken aback by this description, and pointed out that a more appropriate use of language would be "adviser to disabled students" or "adviser to students with disabilities". However, she was clearly unaware of what I was talking about, as well as the fact that she was being offensive. I, on the other hand, had assumed that a supposed disability expert would be wholly aware of language issues, and although I went on to discuss my problems with her, I felt increasingly distressed and frustrated by her lack of understanding.

Equally, while I had expected to be provided immediately with helpful information, the adviser said that she had none of the information produced nationally for students with disabilities in front of her, although she promised to send some on to me when she found it (later she sent me the address of the Department of Education [sic]). At the end of the call she said that she only had responsibility for undergraduates: if I had any problems it was my supervisor's fault; and if I was unhappy with university provision, I should organise a campaign about it in my role as postgraduate representative on Senate. A week later I received a letter from her, enclosing some grant and other information from the Postgraduate Office and pointing out that I could contact the Office, as opposed to herself, for help at any time. She also included a copy of a letter she had written to the Equal Opportunities Officer to say that I had complained about "the lack of separate women's locker facilities in the Library". She said that the reason that I had not been offered help before


As within the medical system, I was again being stigmatised as the cause of my own problems. With further reading, I can see that this was a typical institutional response in the circumstances. Then, however, I simply felt angry that I had been the victim of an injustice. Since the letter also contained some notable inaccuracies, I replied as follows:


I had assumed that, having put my side of the case and corrected the facts, the justice of my position would at least be recognised. However, the adviser's response included the following:


The fact that it was considered that I did not even know who had interviewed me seemed to indicate that I was being regarded as mentally incompetent, as well as being the cause of my own problems by having a defective personality and failing to take the correct action. Murphy points out that:

The adviser's hostility towards me was fairly apparent by then, even if I did not yet understand the reasons for it, so I sent copies of the correspondence to the Students' Union, the Welfare Committee (a University body which I had only discovered the existence of since the correspondence had begun) and the Equal Opportunities Officer.

As a result, in May 1994, I received a memo from the Pro-Vice Chancellor.


By this point it was clear that I would receive no help or advice from anyone in authority at the University, and that I had by default been forced into a campaign simply to establish the facts of my own case. For the first time I was beginning to realise that, rather than disabled people being treated with sympathy, patronising attitudes concealed widespread rather than pockets of hostility. I therefore replied to the Pro-Vice Chancellor:


I received an acknowledgment of this letter and it was passed on to the Welfare Committee with the rest of my correspondence, after which I heard no more. Later the Students' Union's Research and Rights Officer wrote to me, in a letter which revealed the lack of weight with which equal opportunities were given within the University. I was beginning to realise the difference between the paper policy and the actual.


By this time I had also received the University's "Notes of Guidance"for "Disabled Students at the University". (The general information provided to me when I entered the University, including my college "Student User Guide", made no reference to disability.) These notes contained some useful general information about the campus, although they interchanged the words "handicapped" and "disabled" throughout. Access information included the advice that "walking distances between buildings can be considerable", but added that "none are more than twenty minutes apart"; there was no indication as to how this time was arrived at or as to whose walking ability it was meant to include. The notes warned that:


One of the factors mitigating against disabled people developing "pride" is our inability to "adapt" to physical environments and institutional demands. We cannot alter our impairments, but have to rely on environments and institutions adapting to us; when they do not, we can hate ourselves for the fact that we cannot adapt to them. The implication of the University's notes seems to be that if we cannot "adapt", we should be segregated in "residential educational establishment[s] dedicated to the disabled student". But while the physical environment and institutional regime of such establishments may be more suited to our needs, the quality and variety of educational provision cannot possibly compete with that of a university such as Kent. In any case, why should we be segregated from the rest of the academic world, rather than building a few ramps and so on to allow us access? Having read the Notes, though, I realised that if I had seen them previously I might have been tempted to pretend that I could "adapt" in case the University felt it was "unfair to admit" me. I also wondered how many other disabled students had failed to complain as a result of this fear.

I heard no more from the University until December 1994, when I was contacted by the Assistant Registrar who wrote that:


The letter seemed to reflect a genuine desire by this individual to carry out her role as Secretary to the Welfare Committee to the best of their ability. However, it revealed serious weaknesses in the University's system of record-keeping. As the letter admits, the computerised code "D" for "General Disability" provided no useful information about my or anyone else's needs. I would assume - as a student the information is not available to me - that different computer codes exist for "hearing impaired" and "visually impaired" (or however the University chooses to describe these students). If so, these would be of some limited use to the Welfare Committee's Secretary and so to the students themselves. In general, though, the codes serve only to provide statistical information about the number of disabled students within the University. This is perhaps useful to attract central funding or to supply information required by funding bodies, but does not assist individual students. The letter also revealed that the substantial amount of information which now existed on record about my needs had never been passed on to this individual, despite her official role as Secretary to the Welfare Committee which supposedly held copies of all my correspondence. I therefore sent copies on to the Secretary myself, but had no reply.

The same letter added that:

It is significant that the Welfare Committee's Secretary thought it was necessary to state that the student concerned was "partially blind", reflecting the tendency to categorise disabled people by their medical disability. It is also significant in terms of the use of language: what was meant by "partially blind"? Most people with visual impairments have some degree of vision, even if it is only the ability to distinguish light from darkness; "blindness" is a term which has therefore confused many people who believe that it means having no vision at all. "Partially blind" could also mean having the vision affected in one eye only. The use of this term, and the fact that the Welfare Committee's Secretary felt it necessary to categorise the student in this way, betrayed a lack of awareness of and training in disability issues.

However, I felt that the news itself was encouraging in terms of the future for disabled students at the University. In fact, I had been extremely surprised when I arrived at the University to find that no similar society existed, but as a postgraduate research student based away from the campus, and with an elected role already as postgraduate representative on Senate, I did not feel that I was best placed to set one up. In my opinion, the lack of an existing society reflected the low priority which the Student Union had given to disability over the years. During the period which this correspondence covers I had received no practical help or advice from the Student's Union, although I was told that they "sympathised" with me. (I had also received "sympathy" from other members of the University's administration, in the way in which disabled people do attract "sympathy" from many people, but this is a patronising attitude which reflects the charity model of disability and the commonly held view of the disabled person as pitiable, and provides no practical help.) I therefore sent a message of support and copies of all the relevant correspondence to the student concerned. I heard no more from them, but this was hardly surprising given the remit of the Society and the difficulties which they were likely to face.

While the letter did reflect both the Secretary's and the student's desire to increase the provision available to disabled students and thus better meet our needs, as individuals there was a limited amount which they could do without institutional change. The Secretary could attempt to gather better information than the University's computer provided, but changing the record-keeping system would be a far more practical means of improving provision. Equally, setting up a disAbled Students' Society could provide much-needed support and a forum for achieving change, but without representation on the Students' Union's decision-making bodies, and the Student Union adopting a comprehensive disability policy and reflecting it in all areas of its work, progress would be likely to be very slow. The other problem reflected in the letter was the extent to which the future of disabled students within the University depended on the actions of these particular individuals. Not only was institutional change required, but should either individual leave the University - and the student was bound either to leave or to become a member of the academic staff in due course - there was no guarantee that another would step in and replace them. This underlines the importance of institutional change as well as individual action.

Clearly individuals can achieve institutional change in some circumstances, but there are many pressures acting against them. The University's response to my first approach revealed that they perceived it as an attack which needed rebutting, and the fear of not being admitted to an institution or of being asked to leave also mitigates against taking action. So what other means are there of encouraging institutional change within higher education? Where can disabled students go for support? After receiving contact details from the student adviser, I joined Skill, the National Bureau for Students with Disabilities. Here, I believed, I would finally discover the information and support which I was seeking. After reading their mailings for five months, however, in December 1994 I wrote to the Director:


By this time I was not surprised by the contents of the Director's reply, in January 1995.


In fact, looking at Skill's annual reports for 1992/3, 1993/4 and 1994/5, the only mention of disability in reference to anyone associated with Skill came in the 1992/3 report, where Skill's (unpaid) Chair was pictured "with his guide dog, Daniel". There were a number of opportunities where impairment could have been mentioned: for example, the Skill Newsletter carries a regular "Staff update". However, whether or not members of staff and the Governing Council were disabled, and their own experiences of impairment, did not seem to be regarded by Skill as relevant or of interest to the membership.

The only information which I was able to obtain about the composition of Skill's management came from a form circulated in autumn 1995 regarding nominations to the Governing Council, listing those members required to retire who wished to be re-elected. (Under the terms of Skill's Articles of Association, one-third of the Council is required to retire each year, but they may seek re-election.) There turned out to be five categories of Council membership: educational bodies; student unions, industry, commerce and professions; organisations of/for people with disabilities; local authorities; and individual members. Only four individual members were required to be "people with disabilities", and there was no information provided about whether members standing for re-election in any category were disabled or not. The form also reflected the low status of student organisations within Skill: since they were put into the same category as "industry, commerce and professions", it would in fact be possible to elect a Council with no student representatives at all. Equally it would be possible to elect a Council without representation from organisations of (ie run by) disabled people, so long as it contained representatives of charities working "for" us.

Why did I consider it important to find out whether or not members of the staff and Governing Council were disabled, and about student representation? Because I believe that if Skill was student-led, and run by rather than for people with disabilities, it would be more effective. For example, the Skill Newsletter (No 27, May 1995, p7) reports that:

The article went on to say that a member of staff from the Benefit Enquiry Line for people with disabilities was being seconded to Skill, with the aim of improving the benefits knowledge of staff from both organisations. While this was undoubtedly a helpful move, the question remains as to whether an organisation led by disabled students would give a higher priority to tackling all financial issues affecting disabled students through campaigning, advocacy and advice, given the large proportion of financial enquiries.

The view that Skill could be more effective if led by disabled people is supported by Mike Oliver, Professor of Disability Studies at the University of Greenwich, who is perhaps the foremost academic in the UK working in the area of disability. As a founding member of Skill's Governing Council, he was asked to contribute to a special issue of The Skill Journal, published in July 1995 to celebrate twenty-one years of Skill and its predecessor, the National Bureau for Handicapped Students. Oliver describes (pp35-37) how he quickly became disillusioned with the Bureau, finding himself to be "one of only two students who ended up on the council of management". As time went on, he compared his experiences at the Bureau with those as a member of the management committee of the Spinal Injuries Association. This was an organisation that was:


Oliver eventually resigned when "a very able disabled person was passed over for the job" of the Bureau's first director. After discussing his belief that "only organisations controlled by disabled people could properly represent the wishes and views of disabled people", he concludes that:


Despite these criticisms, Skill does provide some useful information and undoubtedly carries out some useful work, not least through its publications (Oliver acknowledges that "it has done valuable work"). For example, in Educare (November 1994, pp30-31), Christine O'Hanlon and Jenny Manning look at the results of including a more comprehensive section on disability on UCAS university application forms from 1993, which could provide useful information for universities aiming to improve their own application forms. Similarly Viv Parker's "The role of the coordinator for students with special needs/disabilities in higher education", in The Skill Journal (No 53, November 1995, pp15-21), underlines the importance of having an institutional policy on disability and provides a great deal of research and information which can be used to help universities to achieve this. And in the same issue, Robert Buckley's "Designing for all students" points out that:


It will be extremely interesting to see how Skill develops in the future, given the growing power of the disability movement. (Oliver notes that "all of the good ideas and initiatives have emerged from organisations of disabled people; for example, independent living, the social model, disability as a human and civil rights issue, the campaign for anti-discrimination legislation and the emergence of peaceful direct action".) However, I ceased to receive information from Skill in October 1995, since I was no longer able to afford the £9.40 annual fee required of student members. The fact that disabled students can only receive information from Skill if they can afford to pay for it highlights the way in which Skill is organised to meet the needs of academics and administrators (who, of course, have their membership fees paid by the institutions which employ them). An alternative method which would better meet the needs of disabled students would be to charge all educational institutions a fee, and then to supply information to disabled students and student advisers at no extra cost.

After the correspondence with the University described above I gave up attempting to gain physical access, visiting only for occasional tutorials when my partner accompanied me to assist me. As this involved him taking time off work, the amount of time that I was able to spend there was strictly limited. Instead I used email between visits to continue contact with my supervisor, the Master of my college and the head of the University's hypertext unit. Email had two advantages over more traditional methods of long-range contact with the University. First, it was difficult to make contact by telephone with these individuals; even if they were in their offices, they were often involved in meetings or calls would be interrupted by students or colleagues. Then the other alternative, making contact by letter, involved writing long, structured messages which might not then be received for two or three days. Email messages are received within a few hours of sending them but can be read at a time to suit the recipient, are generally much shorter which means that they are sent more frequently, and therefore allow a dialogue to develop. Also, my ability to send a letter often depended on my partner being available to post it; sending an email message was something which I could do from my desk.

Of course, my ability to retain contact with these individuals did not allow me to retain contact with the enclosed world of the University. One reason for opting to continue with my study full time after I received my M.A. was that it was difficult to feel a sense of belonging to the University while studying part time, and for the first two years of my PhD, my role as postgraduate representative on Senate in particular had allowed me to feel part of the University community. Now I had lost what I had regarded as the "university experience" and the isolation created by my position as a research student had been greatly increased. The University had in turn lost my input, which had been considerable if challenging. The overwhelming need for change, which my experiences illustrate, is to provide genuine and full access to the academy for all students and academics with impairments, with all of the benefits that will bring to the academy as well as to the individuals themselves. However, this will only happen when attitudes change, or are made to change.

Next: IV. My Experiences Within My Academic Field
Return to: My Experiences as a Disabled Researcher Index
Return to: Virtual Worlds of Girls Index

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