After what seemed to Claire an interminable period of
waiting a letter was at last received from the governors of Uplands. It
stated that her application had been favourably considered, but that a
personal interview was deemed necessary. One of the trustees of the Scholarship,
a Mr Holbrook, would be on business in Monkaster on the following Thursday,
and it was desired that she should be brought to the Queen's Hotel at four
o'clock in the afternoon to meet him. After which their final judgement
would be delivered.
"Am I to go on appro?" gasped Claire. "Does he want to see
I'm not a cripple or a hunchback? or if I speak with a north-country accent?"
(Angela Brazil, Three Terms at Uplands, Blackie & Son, 1945,
pp43-4)
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.
aca1
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.
aca2
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.)
aca3
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.
aca4
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.
aca5
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:
So pronounced and widespread is the way that people avert their eyes or physically distance themselves from disability that I have never met a disabled person who has not commented on it, and the literature on disability is too replete on this point to be worth citing. The disabled often say, "People act like it was catching".
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.)
aca6
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.
aca7
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.
aca8
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.
aca9
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.
aca10
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
is that your application record did not indicate special
requirements. You mentioned chronic backache on your form, but did not
take up the invitation in the prospectus, sent out with the form, to give
more information about your needs and to have a meeting to discuss them
with either the Medical Centre or a University advisor. [The head of the
school] does not recall any mention, at your interview, of special needs
connected with disability and would certainly have acted on such information
if you had proferred it. The interview record confirms his recollection.
Similarly, the Postgraduate Office did not send funding information to
you, individually, as your application form indicated three sources of
support.
. . . The Post Graduate Office [sic] . . . is not the place primarily responsible
for your welfare. I think perhaps this is not clear to you. The academics
are your point of contact, and therefore take first responsibility . .
. [The head of the school] impressed me by his immediate knowledge of you,
referring to chats about the tiresome journey to London etc., and his immediate
proferring of information about the grant applications he would have pointed
towards you had you spoken to him.
From my talks with those concerned it does seem that some of the difficulties
you have come to perceive [my itals] have been the consequence of
failures in communication. People seem very willing to help when you put
your problem, as you found when approaching the Master of [my college]
about the parking permit, which I understand has now been arranged.
. . . The Notes of Guidance for Disabled Students using the university
may not have been sent to you before if the Registry were not aware of
the severity of your difficulties.
. . . I do encourage you to write also [to the Equal Opportunities Officer],
when you feel better. In your role as Postgraduate Rep on Senate a letter
from you would have official status. It would be a pity to accept such
a role and not utilize its opportunities to the full.
aca11
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 am not surprised that [the head of the school]
does not remember my raising the issue of my disability at my interview
as he did not interview me.
. . . In fact I had a full discussion with [the lecturer] who did interview
me. [The head of the school] certainly did know about my disability through
telephone calls prior to my arrival though, and he took me to the station
at the end of my first day because I could barely walk by that stage. He
therefore has had a great deal of information since 1992, and has certainly
not acted on it.
I must say that I did not notice any invitation in the 1992 prospectus
for students to meet with the medical centre, but in any case UKC was one
of many applications which I submitted. By the time I received the offer
and chose UKC, in September, it was some months since I had read the prospectus.
Certainly [the lecturer who interviewed me], who should know the procedure
if anyone does, never mentioned it at the interview. Perhaps this is one
of the areas which the University needs to tackle since the system is clearly
unsatisfactory at the moment.
In terms of funding, I did speak to [the head of the school] both prior
to my arrival and during my first two weeks with regard to grants, so I
cannot understand his denial of this and protestations that he would have
given me funding information. In fact he pointed me towards one source
of funding, EC studentships, but on following it up I was told that these
are limited to Masters students only as the course has to be no more than
a year long (I already have an M.A.). No other sources of funding were
suggested by him or anyone else.
I also cannot understand why the Postgraduate Office claims not to have
sent me funding information because I listed sources of financial support
on my form. Under the regulations, it is not possible to apply unless
you list funding sources. As I listed a bank loan, second mortgage, paid
work alongside a full-time degree, and subs from my mother and partner,
I hardly feel this gave the impression that I was not in need.
. . . I have not been offered any funding information by the Postgraduate
Office despite repeated requests.
. . . I do not accept that [my supervisor] is at fault, as you suggested
on the phone, since he has been given no information or training about
disability issues and could not have been more helpful or supportive in
the circumstances. According to [the secretary of the Welfare Committee]
your post includes postgraduates, and is not exclusively for undergraduates
as you told me.
. . . In terms of the letter to [the Equal Opportunities Officer] the details
which you gave her are in fact incorrect . . .
So far as I am concerned, any problems with communication have not been
on my side, as you appear to suggest. While I enjoy very good relations
with most academics, it is my experience that they do not understand disability
issues or the real difficulties caused by aspects of the University's organisation.
[The Master] is certainly willing to help, but the parking permit has taken
eight months to arrange and has still not arrived. This has affected my
entire second year, or a third of my research. Equally the lockers have
been out of action since last September.
In terms of the funding information which you have now sent me, I am grateful
to receive it. However, I should point out that as I am now coming up to
my third year I cannot reapply for British Academy funding, which I have
already done unsuccessfully in the past. I cannot apply for a Career Development
Loan as these are for one-year courses, and I already have a Professional
Studies Loan.
. . . I resent your implication that I am not fulfiling my duties on Senate.
I am the first postgraduate to bother standing for more than three years,
and have attended every meeting in the last two academic years bar March
1994 when I was at the TUC Women's Conference (where among other things
I seconded the Association of University Teachers' motion on top-up fees).
I think you will find that if you ask any member of Senate, they will confirm
that I make a full contribution to every meeting and campaign regularly
on postgraduate issues (which is what I am elected to do), and am well-known
to all senior academic staff on this basis.
However, when I have what I consider to be a personal problem and therefore
reluctantly (and privately) ask for help, I do not appreciate it being
suggested that I run a campaign around the general issues instead.
aca12
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:
1. The notes on your interview are in your file in the
Registry. If [sic] made by [the lecturer who interviewed me] they would
even more certainly have registered any disability requirements mentioned
at the interview which it would be in our power to arrange . . .
3. The list of students with disabilities, whom I am asked to contact offering
support and advice, does not include post-graduates.
6. I am also impressed that you are so active in your representative role,
and that you now feel well enough to pursue, yourself, the issues which
are currently worrying you. My role, whether including post-graduates or
not, is advisory, and to do with disability. Most of the issues in your
letter go well beyond my remit and, moreover, you can speak more precisely
and effectively for yourself than anyone could do on your behalf.
aca13
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:
When the able-bodied are forced into confrontation with the disabled - that is, when they cannot escape - they often cope with the threat by treating the disabled as minors or as incompetent, withholding deference and thereby depriving them of their due as fellow humans. They are also differentiating themselves from the disabled person by asserting their superiority, as if this would somehow make them less vulnerable to a similar one. To make matters worse, the disabled, particularly the deformed, are sometimes seen as evil . . . This may well be a projection of the inner hostility of the able-bodied towards the handicapped, a sentiment that exists, however seldom it is shown. And so it is that physical impairment is generalized to the extent that it even includes character, a process called "spread" by social psychologist Beatrice Wright (1960).
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.
aca14
As a result, in May 1994, I received a memo from the Pro-Vice Chancellor.
I understand that you have been disappointed by the support
which you have received in connection with your disability. The University
attempts to meet the needs of disabled students in relation to information
provided on application forms. Your application indicates your "chronic
back problem" but does not indicate any special provision which you
require as a result of it. Because of this . . . the Humanities Faculty
advisor to students with disabilities was not alerted to the problem and
was quite right to say that she had not been informed about any help you
might need. [She] took the initiative to get in touch with you as soon
as she discovered that you might need help, as she does with all students
about whom she is informed.
All of the Faculty advisors are willing to support both undergraduate and
postgraduates with disabilities but can only do so if they have the relevant
information. This information is provided by the relevant Registry Offices
when it is provided on application forms.
aca15
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:
. . . As you seem unclear as to exactly what difficulties
I have been experiencing since asking the University for its advice, I
enclose copies of the most relevant correspondence. However, I should also
point out that, far from [the adviser] "taking the initiative to get
in touch with you as soon as she discovered that you might need help",
she actually phoned me more than three weeks after [the Master] asked her
to contact me the same day, and then without any of the relevant information
to hand. Furthermore, she still maintains that she only has responsibility
for undergraduates.
. . . So far as my own situation is concerned, you yourself admit that
my application form listed a "chronic back problem" - chronic
meaning long-standing. At the time of my application I had not visited
the University since 1980, when I rejected the offer of an undergraduate
place, so could not possibly have any idea of what provision I might need.
. . . Another problem which I have found is a dependence by the University
on other bodies to categorise and certify disabled people by medical condition.
The implications of your letter certainly seem to be that if I had written
the medical name of my condition (Scheuermann's Disease) rather than "chronic
back problem" the University would have been better able to help.
In fact, although I have had problems as a result of Scheuermann's since
May 1990 it took three years to diagnose, with confirmation from the Royal
National Orthopaedic Hospital coming in January this year. Despite this,
my needs are no different to what they were in 1992 when I entered the
University. However, my needs may well be different to other people with
Scheuermann's - we are all individuals and are affected differently.
In today's health service there will always be delays, often for years,
in diagnosing the cause of someone's problem. Sometimes there will never
be a diagnosis; I certainly had to push very hard and someone less determined
would have got nowhere. There may also be a long period of time, as in
my case, before it is realised that a condition is permanent . . . But
none of this affects people's immediate needs with regard to the University,
whether they are permanently or temporarily disabled, and only the University
can assess what these are. It is of no use to leave assessments to students
who do not know the campus.
I have also had a great deal of pressure put on me [since first applying
for the parking permit] to register as disabled with Social Services, because
"it makes things easier" for the University. In desperation I
have now done this,
but found it a deeply upsetting and depressing experience as I spent the
statutory hour-long session going over in great personal detail what I
cannot do. I feel that registering should have been a personal choice which
I made at a time which felt right for me. After all - and I knew this before
I became disabled - many, perhaps the majority of, disabled people are
not registered. And while my local council now has a much better idea of
my needs, categorising me as Registered Disabled Category 2 does not tell
the University one iota about the help I need at UKC.
One rationale the University gave me for registering was that holding an
Orange Badge [allowing me parking concessions because of the difficulty
I have in walking] would mean that [the Master] did not have all the trouble
of obtaining a parking permit. But many disabled people are not entitled
to Orange Badges because of the stringent conditions imposed, yet still
need to park close to University buildings to carry books (again, I knew
this before becoming disabled). Even with an Orange Badge (which I now
have), there is a great lack of disabled spaces within the University (eg
there is no marked space in the car park next to the Student Union).
In fact there was no reason for [the Master] to have the problems he did,
because the papers which came to Senate yesterday state clearly that the
parking authorities can issue permits to disabled students [at his request].
They are obviously no better briefed than anyone else, though, as they
seem to require registration, an Orange Badge or a doctor's letter. I see
no reason why students should have to pay for a doctor's letter - they
are certainly not free as the University seems to suppose - when their
College Master supports their request. Surely the Masters' judgement and
integrity should be above question.
Although I approached the University for help, I was instead reduced to
tears by talking to [the adviser] and by her letters . . . I do not consider
myself to be easily upset, and I am really concerned about what the effect
would be on another student. After all, students who feel that they need
advice are already worried and depressed. I do not feel that [the adviser]
can really be blamed for this; it is the University which is responsible
for providing advisers who are not trained and who are possibly not suited
in other ways for the job concerned.
(This lack of awareness also extends to the Medical Centre. I went there
during my first week to make an appointment to discuss my needs, but was
told by the receptionist that this could not be done if I was not a patient.
Yet [the adviser's] correspondence suggests that the Medical Centre is
supposed to give advice to new students with disabilities, which was certainly
the impression I got from the material I received prior to registration.)
. . . I cannot help but feel, not "disappointed" but rather upset
and angry, about the response I received initially . . . Far from my original
problem being addressed, I have instead been deeply upset by the attitude
of [the adviser] in particular, and by the subsequent need to air my private
problems amongst a much wider group of people. I have also been very angry
about the amount of time which seems to have been spent blaming me for
any problems which I am experiencing - as your own memo does by implication
- rather than accepting the responsibility and offering me help. I am equally
angry about the amount of time I have had to waste answering allegations
and correcting inaccuracies with regard to correspondence.
aca16
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.
[The Women's Officer] and I have talked about the issues
that have been raised. It is our intention to meet with [the Equal Opportunities
Officer] to see what progress can be made. I should say to you that [the
Equal Opportunities Officer] does not have any budget that she controls
in order to implement any ideas. Last year a recommendation was passed
[by the University] to appoint a person to a permanent post to advise students
with disabilities . . . Unfortunately the post was scrapped before it was
advertised. It was intended that this person would have some skill and
training and could assist the Faculty Advisers.
The present Advisers do not have to have any training, although they may
if they wish attend courses . . .
It has been the Union's position for a long time that it is of little use
to appoint a person to a specialist post if they are not provided with
at least some tools and resources to do their job.
aca17
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:
the campus was not designed to meet the needs of the physically handicapped, and Kent does not provide the range and quality of resources and facilities which would be expected in a residential educational establishment dedicated to the disabled student . . . It should . . . be noted that the University would consider it unfair to admit a student whose disabilities could not be adequately catered for here . . . Experience has however shown that students who are prepared to be adaptable can successfully complete their studies at the University.
aca18
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.
aca19
I heard no more from the University until December 1994, when I was contacted by the Assistant Registrar who wrote that:
I am the University administrator in the Registry who
is Secretary to the University's Welfare Committee and as such am trying
to ensure that the necessary liaison is maintained between students who
have special needs and the various offices and agencies on campus which
might be able to help.
. . . If you think that I might be able to help you with a particular problem,
please contact me. I myself may not be able to be of immediate help, I
should be able to point you in the right direction. With academic problems,
of course, your Tutor or Senior Tutor should be your first port of call.
As you should know already, each Faculty has an Advisor to Disabled Students.
. . . The particular urgency for contacting you now is to check the University's
records . . . The information available to me is from the computer record,
but the disabled codes cover very wide bands; I cannot tell from the coding
whether you might need any further assistance or not. According to the
record, you are coded: D, which is for General Disability. I'd be glad
if you would get in touch with me to let me know what difficulties you
might have on campus, to see whether I can help you minimise them; it would
also be helpful to have further information on record to enable me to liaise
on your behalf, where required, with the relevant Faculty Officers or teachers.
aca20
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.
aca21
The same letter added that:
I am also writing to let you know that we have a partially blind student . . . who wishes to make contact with interested disabled students because she has formed a disAbled Student Society; her aim is to provide a forum for disabled students, to act as a pressure group and to represent the needs and viewpoints of disabled students on campus wherever possible. She intends that regular meetings of the society should be held and that social events should also be organised to ensure that all students get a chance to mix socially.
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.
aca22
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.
aca23
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.
aca24
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:
. . . I have . . . been disappointed by the service which
Skill provides, since it seems geared to the interests of the non-disabled
staff member rather than the disabled student. Were the service provided
by these staff members adequate I could understand it, but in fact it is
generally unsatisfactory. My own experience tells me that the only people
prepared to push the issues are those directly affected, and at the moment
no support or backup appears to be available for us.
I was doubly disappointed to receive your [21st] anniversary mailing, since
the celebration conference is marked as a "major staff development
event" with "people with disabilities and learning difficulties"
(surely we are all disabled?) mentioned last of the target groups. On top
of this you are charging £95 - hardly accessible to any student,
let alone a disabled one - and do not even mention whether the venue is
accessible.
Personally I cannot agree that the priority of disabled students - the
group which your funding is supposed to benefit - is to develop the careers
of non-disabled academics who are in fact the cause of most of our problems.
I thought your slogan "Developing skills and opportunities" meant
disabled students' skills and opportunities. And as a member I do not recollect
being asked my opinion as to this or any other issue relating to the conference
or the Bureau's work as a whole. I have also never been given any information
as to how many people with disabilities are employed by yourselves . .
.
aca25
By this time I was not surprised by the contents of the Director's reply, in January 1995.
. . . I am sorry that you had a difficult time at the
University of Kent and are disappointed by the service that Skill provides.
It is rather difficult for me to comment in detail on your letter since
I am not absolutely clear about what it is that we have failed to do satisfactorily
. . .
you mention your disappointment at our celebration conference. This annual
conference follows conferences that we have held for many years now and
in common with them we expect the majority of people who attend to be professionals.
We explicitly mention staff development to enable staff to seek funding
to attend, not to discourage students. We are not an organisation of students
and have no wish to replicate the NUS who are. Indeed, when we last reviewed
our aims and objectives, we re-emphasised that we were an organisation
who wished to work with and for students . . . One of the features of our
conferences that I believe has been most useful is that it has provided
an opportunity for professionals and students to work together on issues.
The publicity to this conference [sic], as it does to others, offers reduced
fees to people who are unable to pay the full amount. We have just agreed
a policy which will make public our commitment to this.
I am sorry that we did not mention on the front that the venue is accessible.
It is not only accessible but we only hold conferences in venues that are
physically accessible . . .
We monitor the number of members of Governing Council who declare themselves
to have a disability or learning difficulty and, as in all aspects of our
work, do not expect to be an organisation of disabled people but, as I
mentioned earlier, working with and for disabled people. That policy is
equally true of our staffing . . .
aca26
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.
aca27
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.
aca28
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:
Over a third of the 5,000 enquiries that Skill's Information Service received last year were about financial matters; many of them were specifically about entitlement to social security benefits while studying/training. Although Skill's information staff can give general advice in this area, we do not have a staff member with particular expertise on benefit issues.
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.
aca29
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:
controlled by disabled people, it knew its mission was to represent people with a spinal injury and it was not afraid to speak out, tread on toes or offend vested interests. I was never sure who controlled NBHS, I quickly came to realise that its (unspoken) mission was to protect the interests of educational establishments and the staff who worked in them; it rarely spoke out on anything and most of the vested interests were represented on the council of management.
aca30
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:
In further and higher education, our track record in providing
the necessary and appropriate resources for disabled people to obtain the
kind of education they should be entitled to has been nothing short of
disgraceful. Despite laudatory statements of intent, we have all lamentably
failed to match our actions to our words. It would be nice to have an organisation
working in our area which constantly reminded us of our failure.
It would be impertinent of me to suggest that what has now become Skill
should be just such a campaigning organisation and that it should attempt
to become democratically accountable to disabled people. However, disabled
people do need that kind of organisation campaigning for rights to further
and higher education and fully prepared to use whatever tactics are necessary
to get them.
. . . I remain convinced that if it [Skill] had become a campaigning organisation
democratically accountable to disabled people, the door of opportunity
into higher education for disabled people would be open much wider than
it is at present.
aca31
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:
Having an accessible environment in which people may work, study and relax need not rely on special provision or on making your faculty look somehow institutional or peculiar. With careful consideration design solutions can look as if they were supposed to be there all along. More than that, experience with a wide variety of buildings which have undergone a programme of access improvements tells us that the net result is not simply a more accessible building for disabled people. The result is usually acclaimed as a better, easier building to work in by able bodied people as well. Accessible, inclusive design tends to be a good design. By improving your access for some you will improve your facilities for all. (pp30-32)
aca32
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.
aca33
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.
aca34
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.
aca35
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