A Unit of the Module titled

Insider Perspectives: The Voice of Disabled People

Written by

Paul A. Darke;

Overview

The types of educational establishments I have been to have all deeply affected the way I think, not only about myself as a disabled person, but also about other disabled and 'ordinary' people ('ordinary' is a term I prefer to 'normal', as it captures that degree of dullness and uniformity that they all seem to strive for!). Also, the places I have been taught, Special and Ordinary schools, a Polytechnic and Universities, have all lead me to have the thoughts and feelings I have about, almost, everything; to a large extent, they have also changed the ways in which I think and learn. Combined with the fact that due to spending the years from the age of 7 to 16 at special boarding schools I have had a rather different form of socialisation than one would usually expect, and I have not been as scared as some others I know, who, endured the same or similar experiences (or have I?).

I am splitting the unit into a number of headings:

1 Up to the Age of 15 In this part I will give the basics

of my family and first Special School attended.

2 Up to the Age of 17 Here I will talk about my transfer

from one Special School to another and then a further

transfer to a Comprehensive School within a year.

3 Up to the Age of 32 In this school I talk of my post-

secondary experiences: unemployment and employment etc.

Finishing up by talking about my Polytechnic and

Universities experiences (which are on-going).

1 Up to the Age of 15

I was born in 1962 with Spina Bifida and Hydrocephalus (SB&H) to a working class family, who lived on an enormous Council Housing Estate in Surrey. I have four brothers, all of whom are older and able-bodied. Financially the family was poor, and my arrival made them poorer. I was treated at a central London Hospital (having a spinal lump removed and a Hydrocephalus valve fitted in my head), which meant I had to spend many months in hospital, up until I was about six; consequently considerable extra travel costs and worry were incurred by my parents. The seeds of parental break up were sown around this point as the welfare of the four other children began to suffer at the expense of the one 'handicapped' child (me); it was then that my elder brother (two years older than me) developed a deep hatred of me (which became mental illness in later life). None of this made my life any happier, but it was all do with finance and being treated differently, socially and not by my bodily difference. Though I do not blame myself, for the family strife, as an individual or as a disabled body but as the tool of destruction in the face of socio-economic factors, factors which would have existed anyway but which the extra financial hardship of disability pushed beyond breaking point.

From the age of five, until I was seven, I had a private tutor at home - paid for by the LEA - because the local primary schools refused to take me in. The reasons that the local ordinary schools gave my parents were mainly medically based: double incontinence and the valve in my head; the ordinary schools were worried, and didn't wish to take the responsibility, that other children may throw stones at me and damage (i.e. kill) me. At this point my parents heard about a Special Boarding School, Coney Hill School, which specialised in children with SB&H, from the Association of Spina Bifida and Hydrocephalus. The image that exists of children with Spina Bifida even today is extremely negative, combined with Hydrocephalus it is even worse, so the ordinary schools attitude was not unusual; to some extent it didn't really matter that I could walk (penguin like) up until I was about 10, all that mattered to them (as they saw it) was that it wasn't safe for me in an ordinary environment. The old "it's for their own good" argument, which, although I understand it as socially cogent, not only ignores the violence of Special Schools but also acts as part of the social construction of disabled people as sick, vulnerable and pathetic and liable to die at short notice (as we all may!).

Having a private tutor at home and then being sent away to boarding school not only ensured that I saw myself as different but that my brothers and their friends (who went to the local school) neighbours and relatives, also saw me as different. In reality I had been an individual who played the games they played, did the things they did, but, upon entering the special school system I became someone who didn't play the games they played and didn't do the things they did: I became a handicapped person. A view none of them have ever been able to escape from; whatever I do, even now, I am in some sense less of a human being, and somewhat tragic, to them. Even though I was at boarding school I came home some weekends, and for all major school holidays. The school holidays even managed to make me different: as some of the pupils lived considerable distances away (my family lived 48 miles away) half-terms and bank holidays were not given when they occurred but added on to the major vacations. Thus I had longer major school holidays than my brothers, which they - and to some extent my parents also - resented (the logic of the argument was lost on kids only slightly older than me).

The financial strain on the family never let up, and going to a boarding didn't help. Although the fees for Coney Hill School were paid by the LEA, travelling and clothing costs meant that larger amounts were spent on me at the detriment of others in the family. Things weren't any easier despite the fact that my father had two jobs, this meant that when he wasn't eating or working he was sleeping. There was pressure from Coney Hill school for me to have new clothes, due to dogma and the extra wear and tear of my disability, which meant that I came home fewer and fewer weekends, so much so that eventually I no longer went home at the weekend during term time. As many of the other pupils went home at weekends isolation became a key factor of my childhood, so much so that even now, I prefer it. What is interesting is that I didn't hate it, I came to enjoy it; even to the extent that I would prefer to miss out on things I wanted to do if it meant I had to go in a group. I internalised my social situation and made it a personal quest for aloneness. The routine of the school, bathing, eating and sleeping, ensured that alienation and loneliness set in and the constant pressure on me to walk, rather than use a wheelchair, (normalisation in practice) made me increasingly hate myself and my body

As I had been removed from my family and placed in to what we, its pupils, considered an institution I had to survive on my own; although, I am sure the school would argue otherwise, I felt unable to discuss my life and, as such, personal problems were not raised. As many of the nursing staff were little older than the senior pupils a deeply meaningful conversation was not possible: I fancied them, I didn't want to bear my soul to them (and anyway it would have been a show of weakness - the socialisation of four brothers ensuring I had at least a degree of pointless male reserve). And, anyway, all that seemed to matter to the staff was that we all drank our water (due to supposed kidney weaknesses) and had our cushions with us (to protect against pressure sores); the humiliation of always having to carry a foam cushion did little for any of the pupils' self confidence, let alone mine.

For a fairly detailed and accurate description of the school's routine and normalising practices, when I was there, Maureen Oswin's book The Empty Hours would suffice; although she calls it "Larchdale" and greatly romanticises its educational and social routines. What she misses is any real critical stand point. Superficially Coney Hill School did have its points - as the "Larchdale" piece will show: freedom of movement within the school and, initially, a fair educational standard - but it also managed to be what most institutions are: containment centres. The things that mattered above all else to the school were that we learnt to be as little of a burden to society, and as hygienic, as was possible. Our bowel movements were charted, the amount of urine we passed was measured and we bathed once or twice a day. The dread of smelling was ingrained into us so much so that today I have nightmares about bursting a urinal bag, or leaving a trail of faeces, in a friend or relatives house. Even from this account you can see that education in this school was secondary to other normalising practices.

I went to Coney Hill School in 1970, the same year as integration became officially recognised - to some extent compulsory, with the introduction of the 1970 Education (Handicapped Children) Act (Barnes, 1991) - and as such the pupils who went to Coney Hill School had more severe disabilities as the less severely impaired went to their LEA schools (though mainly due to cost). What this meant for me was that I had less people to play with - as I was fairly able and played very active games - and, educationally, the standards slipped. The educational standard slipped not because the newly arrived, severely disabled, pupils weren't capable of higher standards but because the teachers had not been sufficiently trained to deal with them (the teachers said things like "They just don't want to learn"!) and, in the tutors defence, often the pupil had had no, or very little, education before arriving.

As time went by I became more and more of a loner, feeling a great sense of despair and pessimism. In reading about life in special schools I have now realised that this is due to my inability to have a coherent "cover story" (Cheston 1994: 67), for myself and to tell others; a "cover story" to explain why I was in an institution and not at an ordinary school, not so that I could deny my abnormality but in order to validate my unfair treatment and exclusion from a society that professed to be fair and egalitarian (i.e. normal society). As I saw it (which wasn't necessarily how it was) less physically and intellectually able pupils were being integrated and I wasn't. This meant that there was either something intrinsically wrong with me, which there wasn't, or the manner in which integration (which as a naive child meant a passport to a 'normal life') was carried out, was flawed. The relative poverty of my family - intellectual, financial and social - meant that they didn't press for my integration into a local ordinary school as it became easier for them for me to be at boarding school whilst their marriage crumbled. The fact that my ability to walk rapidly deteriorated, I quickly went from sticks, to crutches to a wheelchair, and that my parents lived in a completely inaccessible house, meant that there was even less reason to want integration for me.

The result of this was that in my last years at the school, aged, say, between 12 and 15, I was the most physically and intellectually able pupil there. So much so that I was told I had to leave because they couldn't teach me anymore as I had reached their pinnacle; a pinnacle of 5 CSE's. Due to what became piecemeal education for me I became further isolated, and my lack of a "cover story" meant that I had to create one for myself; thus I had to become "thick" so as to justify my segregation; and I desired the use of a wheelchair more and more. I duly lost interest in class and only just managed the five CSE's. I turned inward and spent most of my time in silence and self contemplation, my mind wandering freely into the realms of analysis that are not, on the whole, good for a 14 year old. Paranoia and calculated behaviour became my trademark.

It was decided that I should leave and move onward to Lord Mayor Treloar College, in Alton. Treloar's was only about 25 miles from where I would then lived, with my Father, in a 'Halfway House for the Homeless', as my parents had by this time parted company. There was a problem though, Trelaor's was full, however a place might come up as a pupil there was ill. Yes, I had to wait for another pupil to die so that I could enrol there. He dutifully died!

2 Up to the Age of 17

I should have gone to Lord Mayor Treloar in September 1977, but alas (for me that is) the kid didn't die soon enough and I didn't get to go until November. Who knows what would have happened if the kid had lived! If Coney Hill School had isolated me, Treloar's would nearly kill me. Whereas I had been, basically, 'Top Dog' at Coney Hill school, intellectually, age wise and physically, at Treloar's I was bottom (possibly lower!). Intellectually Treloar's was far superior to Coney Hill and despite being a boarding school I got to go home at weekends because my Father lived closer. Boy, did I want to go home at weekends? Whereas Coney Hill had only been for people with Spina Bifida, Treloar's was for anything, including people with Haemophilia. The whole school (though called a college due to having post-school age disabled people doing training courses: boot making and book keeping as far as I can remember) was run on a prefect system; each dorm (sleeping from 5 to 8) had a prefect who was, more or less, God in his own dorm. He tended to be the strongest physically as well. If you ever beat your prefect at his favourite sport (table tennis in my case) then cleaning the dorm toilets for a week was likely: I cleaned a lot of toilets (but it was worth it!). Coney Hill had been a very 'soft' place in comparison.

I was put in to do subjects that I had never done before and which I had even less interest in. I was there mainly to take O'Levels, the only ones that followed on from my CSE's were English and Maths and History, but these were to a much higher level than I was, consequently I was completely lost. The fact that I was put to do Chemistry, French and Geography (never having done a days work on any of these subjects in my life) merely secured me in my insecurity. It was here that I attempted to eat and drink my way out of despair and loneliness. I seemed to eat constantly, and vast amounts, and always the things that were least good for you. Also, at Treloar's, I gave up walking on crutches completely and lived solely in my wheelchair; not good for weight control either. And, to my amazement, no one seemed to notice or even care. Whereas at Coney Hill your food was closely regulated and you were never allowed off the premises without expressed authority, at Treloar's not even meals were served already apportioned. Food was put in piles on the table and you took what you wanted; I got fat and the armless thalidomide was usually left to starve. The freedom went straight to my mouth, and there was no one there to show me the errors of my ways.

The violence of the school was deeply distressing and ran along the lines of 'if I don't do it to you, you will do it to me'. The quip about the thalidomide may seem funny but, alas, it was also true. I remember a group of us (if you weren't 'with' you were 'against'!) holding down an armless and legless thalidomide and punching and kneeing him in the head whilst all he could do was bite. The school's obsession with sport (one felt the headmaster wanted to be head of Rugby or Harrow and win a lot of trophies) was seen as part of the normalisation of the pupils; we regularly had competitions against other local, ordinary, schools and predominantly lost. One presumes that the violence of the place was tolerated in a similar vein. There was almost no supervision and that which did take place was often carried out by the prefects, the same people who promoted the violence.

The students with haemophilia slept in the upstairs parts of the buildings and the physically disabled slept downstairs - and never did the twain meet - creating not only an elite of the pseudo-able ('the haemophiliac's) but also an elite of prefects who could do as they wished to us physical abnormals and then retreat upstairs. The violence was also linked to the fact that it was an all boys school (though this, but not the violence, has now changed), which meant not only personal frustrations got vented upon others but also sexual - sexual abuse not being un-common.

Needless to say I failed all the O'Levels that I took (I remember leaving the chemistry paper blank, as I had absolutely not idea what the questions meant, let alone an answer), and felt a complete failure; I had justified, at least to myself, my segregation from ordinary education. At Coney Hill they were obsessed with hygiene whilst education seemed superfluous, at Treloar's they didn't seem to give a damn about you personal care or well being and education was central. A balance may have helped, but integration would have been better. It is interesting to note that all my brothers failed secondary education, and as such - due to class as much as anything else - it is not guaranteed that I would have done better educationally if I had been integrated into a local ordinary school.

Segregated from the ordinary and then separated from the females guaranteed that I would have a serious problem in relating to women in the outside world, creating a deep rooted sexual dissatisfaction that would last a good few years until I saw a psychologist - by chance. The failure of my attempt to get O'Levels (which my parents insisted were the key to a better - i.e. normal - life) meant I had to leave Treloar's and go to a sixth form college in my home town of Camberley. This meant, at last, integration into the local community: a comprehensive that was full of beautiful young nubile girls - I didn't handle it well.

By the time of my arrival at France Hill Comprehensive Sixth Form I was fat, lethargic and unfit, mainly due to having not used my crutches for the whole nine month period I was at Lord Mayor Treloar's. Needless to say, I had to use my crutches to scale many flights of stairs, to lessons, at France Hill and it was something I hated, so I took up not going to classes, I registered in the morning and then went to the local pub and got pissed, everyday (after all I had more money than the lot of them because I had my Mobility Allowance). The only lesson I went to was the one I had before 'Opening Time', which was in a ground floor classroom: 'Government and Politics'. The only O'Level I got in my year at France Hill was, yes, you've guessed it, 'Government and Politics'.

Integration had come too late, and it pushed me further and further into myself. Most of the other people in the sixth form had been at school together from the age of five and, as such, had developed a shared history with one another and in the locality. I had nothing to share, not even in the locality, as my history was in Hayes and Alton, not Camberley, and with people I would never meet again as they were from a wide range of places that were all a considerable distance away. As an adolescent history is important, and I didn't have one, not even with my brothers or parents. To make matters worse I didn't get to go to the school my brothers had, on the council estate, as my father had by this time moved to a different part of town. I ended up going to a comprehensive sixth form where the more affluent, middle class, kids went; and being particularly working class I stuck out even more. Sticking out as the only disabled student in the place only compounded the trauma: within a period of three years I had been to three schools, in three different parts of the south and seen my parents split up (acrimoniously).

At France Hill, for those 10 months, I seemed to be noticed less than at Trelaor's, and I left secondary education with the one O'Level. I had disappointed my parents and faced a life time of either unemployment or - if the Disablement Resettlement Officer at the Job Centre had got his way - telephone operating. I hated myself and every one around me; but my most common emotion was confusion. I was confused because I knew that I had been treated unfairly and let down by the education system (i.e. I wasn't educated) but couldn't escape from blaming it on my own bodily difference.

3 Up to the Age of 32

Upon leaving school with one O'Level I was indeed unemployed, for two years, but then I joined the Civil Service, for two years, until I broke my leg and was in hospital (for four months in traction). It wasn't breaking my leg that caused my leaving the civil service but being in bed in hospital next to an middle aged American, back pain suffering, psychologist/art lecture (of a London University). He was in for about two months and, by chance, I had, what amounted to, therapy; most of the day, everyday, for two months. He convinced me there was more to life than being a clerk and that women weren't what I thought (that's another essay!). He changed my life, if only I had had this when I was 14, 15 or 16, or just 'before'. He not only showed me how people worked, but how society worked, how - indirectly - society constructed disability and - most importantly - that what I had felt, and still feel, was justified and valid. Consequently I quit the Civil Service, met someone, got married and left the region (due to house prices as much as anything) and moved to Wolverhampton; a culture shock if nothing else. After a short term job on the Community Programme and a short course for the disabled about computers I got a place at Wolverhampton Polytechnic doing a Dip.H.E., a course that is basically the first two years of a degree but separated so as to reduce the entrance requirements.

I got the Dip.H.E. and then did the final year to get a 2:2 in English and History. I then did a Masters degree at Keele University in American Literature. Once I had obtained that I got a job for 9 months setting up a resource library on a local council's supernumerary scheme (a tokenistic "give a cripple a job' scheme that makes 'them' feel better without them having to change their discriminatory policies). Having completed that, I started a PhD on Film and Disability at the University of Warwick (in Coventry) and am now in my final year (hopefully). I have whizzed through the three Higher Education establishments I attended because the points I will now make about my experiences at them are applicable to them all.

The MA and PhD have been completely self financed, no state aid at all, due to the fact that I only got a 2:2 in my first degree (which I did as a uneducated mature student). A situation that needs to be changed, all disabled higher education students should get mandatory grants. A large proportion of my time has been spent begging to charities - not good for the self esteem - for very little return; I have only managed to get enough to pay a bit of my fees. Consequently the poverty trap has not only ensnared us (my wife also started a degree just after me) but has also prevented us from carrying out research for our degrees to the degree that is ideal. It has also meant living in sub-standard housing that is quite un-suitable for a wheelchair user. Higher education isn't free, its bloody expensive, especially if your a mature disabled student.

The institutions themselves seem, also, to have a complete lack of conception about what equal opportunities is; they seem to have felt that "letting us in" is enough. In all of the higher institutions I have been to, strenuous walking on crutches up many flights of stairs has been necessary as a matter of basic attendance (it is fortunate that I have been able to do this, but others who couldn't just gave up their courses). A complete lack of willingness to accommodate the disabled student has been endemic to them all, and that consideration that has (is) given has always be begrudgingly and blamed on the disabled individual (something that is wrong: morally, politically and socially). Consequently many of the insecurities that I had at secondary school began to re-surface; for example, having got fit after breaking my leg I began to become overweight again at the Poly and Universities. Many of the factors of integration - of which going to Poly or University is an example - bring to the surface many of the discriminatory factors that exist in society that if one was quietly getting on with ones life, one could ignore; if I can't get to somewhere, or have to meet insensitive people, I just don't go or I stop seeing them. Once at Poly (etc.) there are places and people that have to be dealt with on a daily basis, with no escape except resignation. The point of effective integration is that these factors are minimalized or eradicated for the benefit of all, and not just to accommodate one "handicapped" person who couldn't otherwise do whatever has to be done.

Little, or nothing, was done to change rooms at any of the places, and I have never met any of the institutions 'Disable Student Officers' in my entire seven years in Higher Education. The Students' Union seemed of little help and personal tutors always seemed to be planning to "do something" or "speak to some body", but never did. Other times, lecturers would say: "if I had only known before hand" then they might have arranged something different; it didn't seem to occur to them that they said it the previous week and the week before that, after all I was in their weekly class! I was, upon getting into Higher Education, under the illusion that things had changed since I was at school (and that it was 'better' in Higher Education), but they hadn't, and my despair at the whole situation for a disabled student was not only valid but accurate.

I wouldn't have minded the attitudinal barriers as much if there hadn't been so many environmental ones, but little things make life so hard, and consequently discourage full participation in the institution's life because you know that you'll always be just behind, or dependent upon, other students - if not entering by a completely different door. At the University of Warwick, for example, when I started, I had to enter the library through locked service doors for disabled access, once I had managed to catch a caretaker's eye or ears that is. Then last year a whole new complex was added to the library building and I was assured it would facilitate full and free access to the library. It did not. I, thus, still have to enter the library in the old method, which means I do not go to the library that often; which means that whereas others walk in the front door I have to usually sit outside (often in bad weather) and wait five or ten minutes until someone answers my banging, or shouting, on the door (Keele was exactly the same).

Numerous other situations exist in all the places of Higher Education, and Secondary Education, in which I have studied, which construct the individual as the problem - when it is the environmental design or organisation - and, as such, they marginalised the disabled student from his own capabilities as well as from his fellow students. One could give examples ranging from immovable seats in the eating areas, to a lack of disabled friendly toilet facilities, to inaccessible inter-campus transport, to counters that a wheelchair user cannot see over, to parking spaces that either don't exist or are on the other side of the campus from which you want to be, but I won't; it would seem endless.

Conclusion

I have always believed that for learning to be effective it must be fun and, as a disabled person, if you have to struggle to overcome needless barrier after barrier, the fun wears a little thin. But more importantly the most important thing that must be achieved is that the student is educated, and I wasn't. I am not advocating integration or segregation in this piece of work, all I am advocating is that disabled students get a decent and satisfactory secondary education. The fact that I was not initially educated to any degree of competence is what has made my life particularly difficult, and almost ensured that I became the stereotype of what disability seems to represent: dependent, low paid (or unemployed) and labelled as having a learning difficulty. Integration is not merely about provision, but about the non marginalisation of the individual once integrated. What that means is that often disabled people are educated in 'life skill' and not in 'knowledge'; priorities must change, life skills are not that important (unless, of course, you hate - as many do - those who live a 'disabled life') but education is. Your education determines the rest of you life and a 'disabled education' leads to a 'disabled life', and the disabled life is more than just about 'life skills'.

Also, as a disabled pupil/student what is equally important is that support is given to the individual: financial, physical and emotional. I believe that simple integration is not sufficient as it individualises what is a much wider case of social exclusion, and that both ordinary and disabled children should be politicised (counselled, for a better word) about disability (in a similar way to which race/racism is) so that it is de-individualised for the parent, child and teacher. The de-individualisation of special needs education would enable provision to be equalised rather than what it is at present: piecemeal provision of the type I have shown above. Teachers should also be much more aware of the extrinsic factors which affect how and what a disabled person can learn; factors such as class, the lived reality of specific disabilities and social stability - though this is as applicable to ordinary as well as disabled children.

Bibliography

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to Jordan & Powell" in Disability, Handicap

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Len Barton, The Falmer Press, London, 1989

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Question

The Question

When or should a disabled pupil or student be given lessons in "disability awareness" so that they can begin to validate their own experiences, and place them in a social, rather than individual, context?

or

Using this personal account, consider what effect the individual's family's class and financial status had upon him. What may have happened if it had been different?

or

Which is more more important, an education in 'life skills' or 'knowledge'? Which should have priority?