Today SEN in a mainstream environment is widely accepted, but I think it is essential to recognise how things were used to be. I am going to talk about my experiences quite openly, not out of glory or pity but as an example of how things were.
I was born in 1974, and I have significant cerebral palsy where my speech impairment has been my most considerable disadvantage as people assume I lack intelligence. The irony is I am hyper-intelligent, think Sherlock Holmes, which is a curse when you have a spastic body, again just factual, I have lived well.
My first school at aged 2 was a mental hospital, and the child unit became the ‘QE2 Jubilee School for the Mentally Handicapped’, opened by the Queen.
The teachers very clearly understood I did not have learning difficulties, and I was bright. This revelation sparked the first attempt at integrating me into a mainstream school, which in the late 70s was unheard of.
They tested me out in several schools and aged five they placed me in the local village school. I am not sure it was successful. It was a very middle-class area and having your child sat next to a ‘drooling spastic’ did not go down well.
I used crutches in the playground and ‘hit me with your rhythm stick’ was number one so other pupils asked me to hit them, the teachers were not impressed.
It was ‘decided’ to move me to a ‘physically handicapped’ unit at a mainstream school at a neighbouring town. It was good and mostly coped with me.
The headmistress once told me I need to work twice as hard as anyone else to get on in life, something that stuck with me. She was right, but at 45, I am now suffering the price I paid.
Now we have the main event, going to an all-boys mainstream school. If you remember ‘only gay in the village’, this was ‘only spastic at school’. It is so hard to explain how much discrimination I faced. I was bullied endlessly for five years which the headteacher said to myself and my parents was a part of my education. The worst thing the school did was to tell other pupils to treat me ‘normally’ as they then resented the special equipment I had.
It is essential to understand as a teenager in a spastic body, I did not understand what was happening. For the first three months at regular school I cried myself to sleep as I was so confused.
I did not understand I was ‘disabled’, a discriminated person until I was 17. I know I was different, but I suffered from what I call ugly duckling syndrome. I had no cp peers, so I did not know who I was. Plus I was gay which I did not understand until I was 21.
6th form college was a breath of fresh air, and I could start to be myself. I lived in the computer room and once with their permission-ish ran up a £600 phone bill using the internet. I loved the freedom, and I was proud when the college put on a play I wrote on my experiences at school called Normality, which is a very complex issue.
College was a time when I was very normalised and automatically conformed, denying myself using equipment that would help me. At school and college, it would have been useful to wear a helmet in case of falls, a bib/apron/smock at lunchtimes and certainly a boilersuit for pottery.
The early 90s was a time when everyone went to University, so I wanted to go to University, so I did. In September 1992, I went to Coventry University, and in many ways I never left. I am now doing a lot of work as a service user in healthcare and social care issues at the university.
University was the start of being the person I am now. It gave me the freedoms I never had. My course was Manufacturing and Business Studies, and I mostly hated it, but it paid the bills. I learnt much more from the students’ union, and I quickly became students with disabilities officer, a role I held for four years.
The university allowed me to denormalise, to be myself and use the equipment that helps me with confidence. It was a liberating time for me and probably a time I had less stress, no bullying, but I quickly found myself becoming more distanced from my non-disabled peers as I became more myself. I got very involved in the city, Coventry, and became a resident of the city.
I remained very involved with the University in many ways and now train healthcare staff as a service user.
The best decision I made in my life was not to move home but to stay in Coventry. My parents were emotional and physically abusive to me, a fact I just have to live with without malice and moving back home would have stunted my independence. I also had a severely impaired boyfriend to consider.
Lessons to be learnt…
I think the first is be very weary on imposing the learning difficulty label as at an early age it can open and closes doors. If you have LD label then you will not get an education so you will have LD and your childhood will be about preparing for adult daycare services, I actually had this told to me very recently as a matter of policy in one council.
The second thing is equipment which is a matter of personal choice. Whether to use a nappy, bib, apron or whatever is a choice, no right or wrong answers. And it can not be about fashion. I personally hate the butterfly harnesses as they offer no posture support, I would much prefer a 5 point harness as the crotch strap provides posture which enhances confidence and intelligence.
I think impairment specific peer support in mainstream schools is also essential. As a teenager you are searching for an identity, and you need to see yourself in others. You would not put a girl in an all-boys school. It took me many years to relate to other people with cerebral palsy. Impairment and Disability are two separate identities. I believe everyone has impairments to a degree, but not everyone is disabled, and society is currently confused by this.
I also believe post-university support for people with severe impairments is very very important, and it needs to be started at the beginning of the final year. I have seen too much talent lost because people go back to their parents as social care does the basics if anything and they just disappeared. Society does not care if I work or not, so I had to fight hard to accomplish what I wanted. This attitude needs to change.
It is essential to reflect on the history of special needs education. In 1910 a law was passed requiring us defectives to be separated for genetic concerns. Charities led in the building of special schools which were an innovation of their time.
I recommend watching or reading Skalligrig, which is a powerful reflection of what it was like to be disabled.
Also, important to note I did not have a legal right to an education until 1981 when I was 7. These were the dark ages of special needs. I am still amazed I coped at school, I was so isolated.
Being ‘disabled’ in the 80s is very different from now. I had to wait outside shops in my buggy or wheelchair, and once a parent pulled a child away from me saying ‘you might catch something’.
With all this said I had lived very well, and I am grateful for the education I received as well as the social skills. I may sound bitter to some readers but it is an honest reflection.
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