I wrote the below article for the Communication Matters journal (August 2008). This article is a brief history of my life and what challenges I had to overcome - both physical and psychological. Having had these challenges, I feel this has put me in good stead to tackle what live throws at me!! Anything is possible if you put your mind to it!
Journey to Independence and Equality
I was born with Cerebral Palsy without speech. I was told I was always active. Even when I was a baby, I wanted to be doing things – whether it was looking at something colourful or playing with a toy. As I grew into a young boy I discovered that I could do things with my hands and feet. This gave me a sense of achievement as I had control over an aspect of my life. As well as playing with toys, I used to play with random things such as spoons, newspapers and books. I liked playing with these things because I liked challenges and I found turning a page over with my feet a challenge.
My first school was Ingfield Manor School which, as readers may know, concentrates on children with disabilities taking control over their bodies. I enjoyed working with my body and getting it to do certain things, such as grasping bars and managing to sit on a box by myself. Sometimes my box used to come out from under my bottom whilst I was still hanging on to the bar on the table! There were a number of classes which were orientated towards physical education and in one class we had to lie on slatted tables and roll around. To me, this felt scary as I was always worried about falling off. When we had to roll over, I always liked someone to be there in case!
I attended ‘national curriculum’ lessons: English and Maths. I enjoyed the academic work but I was not getting as much as I needed, so my reading was behind. I think a few of the staff spotted my capabilities and so they arranged extra lessons. I had a really good teacher who was inspiring. She took lots of time talking to me and understood what I needed to progress. When she was teaching me to read, she went really slowly so I could try to say the words. Looking back, this was an important time for me as this really helped me to achieve more academically.
I left Ingfield Manor when I was seven-years-old and attended Chailey Heritage School. At Chailey I took many more academic lessons which inspired me. I had a computer which I could use myself. This felt good because I could work independently. I was a very determined boy and I preferred to do things by myself. At that time my written work was behind and I wrote using just keywords. I stayed at Chailey for six years and had some good teachers who encouraged and pushed me to achieve what I could.
From Chailey Heritage, I went to my final school - Valence. I was thirteen and I would say it was one of the important stages of my life. Valence felt different, as it was ran stricter and their classes had to follow the national curriculum. I was put in a class with about eight other students. The school employed a classroom assistant who worked with me for twenty hours a week. I did enjoy most of the lessons but when it came to art classes, my teacher, my assistant and I were perplexed about what I could do. I could not draw because I could not control my arms. Okay, I could have messed around spreading paint on some paper, but to me that would have been quite a pointless exercise. Instead, I used to clock watch.
I began to go to French lessons, what a joke they were. Let me explain, I had a communication aid with an American voice. This meant in order for me to ‘speak’ in French, I had to type everything in phonetically with the assistance of my teacher. As it approached the GCSE level, the school decided that I should drop French lessons and concentrate more on my English and Mathematics. In year ten, I had extra one-to-one lessons. I really looked forward to these lessons as they gave me a chance to ask questions about what I did not understand during the week.
I was a keen student and I really liked getting on with my work, but the other students were playing up. A new student joined the class who had behavioural difficulties and the others got to like him so they misbehaved more. I was ashamed by this so I decided to speak my mind. This did not go down well with my classmates. In fact they did not talk to me for a few weeks after but that did not bother me as I kept doing my schoolwork.
My social life at school was not a lively one. I felt there were not very many students who I connected with. There were some who I had a laugh with but I did not hang around with anyone in particular. I was quite happy about this but the care staff thought this was strange. I got told that I should socialise with the other students who I was living with and I remember thinking, why? Why should I spend my free time socialising with students who I did not have anything in common with?
Returning back to my journey, after my sixteen year school life, I started my nine-year further education ‘career’ at Hereward College. At first, I was very impressed with the college because it encouraged me to be independent and take responsibility over my life. At that point in my life I loved computers and I wanted to work in IT and I studied GNVQ Intermediate information technology to start with. I found the work incredibly hard because I felt out of my depth. Anyway, I kept at it and very slowly I was completing the assignments.
Even though I spent most of my time undertaking my college work, I did quite a bit of socialising – both with students and staff. I felt free to express myself. When I was at Valence, I felt as if I could not express myself because of the way I was perceived. At Hereward, at least, for the first year, I was treated as an equal. If I wanted to do something, I had to arrange it myself. For instance, I had a tricycle which I needed help to get on, so I had to arrange for my physiotherapist to train some of the care staff to help me on it.
When I was around seventeen, I went through a depressive patch regarding a girl who I liked. This girl did like me but let us say something happened which resulted in her not liking me. This made life really hard because I was thinking about the situation I had put myself in. This made what I did ten times harder. Fortunately, I was aware I had a real problem so I got psychological help. I had counselling on and off for a year and a half. I am a deep person and always have been. The situation eased off after she had left.
I completed my Intermediate IT course in Christmas 1997 and I started my advanced GNVQ in the January. I excelled in my first year. I was in a class with some nice students who were keen to do their work. A few of the students took me under their wings. I enjoyed the rest of the year in the academic sense but my personal life was a different story.
The college employed a number of new care staff, some of these had experience with people who had learning disabilities, some had no experience. I got on with the new staff without the experience because they did not assume things about me and the other students. Yet, the others with experience had preconceptions of people with disabilities. These preconceptions got in the way of how they were caring for me. They did not realised that I had just a physical disability. This made me very frustrated as I could not get them to understand what I wanted to and, indeed, my philosophy on life. This got me down and I began to keep myself to myself.
January until June 1999 was a really stressful time because the college was doing some refurbishing of the student accommodation. There were three residential blocks and one was closed for this work. This meant the students had to move into the two remaining ones. At this time, the college was so short staffed that everyone was stressed out. This affected me mentally and physically. The reason it affected me physically was because when I sense people are getting stressed, my body tenses up.
I decided to leave Hereward College that year and I continued my GNVQ at a local mainstream college in September. This was a major change in my life as I also wanted to get my flat so I got myself on the housing list. I lived with my step Dad, Mum and brother. For the majority of the time my Mum assisted me with my personal needs and care agency staff came in mornings and evenings. Big challenges faced me when I started at West Kent College. For a start, the college could not find someone suitable enough to be my study assistant so a mate stood in. Due to our differences, it was a difficult time for me.
My first year went and I did not feel happy with how much work I had achieved. In October 2000 I had a new study assistant who worked there before so knew how the college worked. In effect, I was behind a year so there were not any formal lectures for me. I was doing my assignments unsupported from my lecturers. In fact, I requested just an hour’s contact with a lecturer a week but this was not granted. Fortunately, I have always been a determined person so I located the core material from the Internet and undertook those. My Advanced GNVQ eventually took five years to complete.
With my HND Business course, it was very different. I had the option of taking it over four years but I wanted to see if I could do it in two because I was feeling my life was running away. The new lecturers were really good and very accommodating. Unlikely the final two years of my GNVQ, I was in a class again. This felt brilliant as I was able to talk to the other students about my assignments. Naturally, it took a while for them gain confidence when communicating but very quickly some were picking me when group work was set. Throughout my HND, my career ideas were leaning more and more toward psychology and disability awareness. From this, I decided to go to university to study social psychology.
Meanwhile, the college asked me to run a communication workshop for a training day. I was thrilled by this and accepted straight away. I felt this was my chance firstly to give the staff the confidence to talk to the students without speech and secondly, to convey what sort of person I am. I was preparing for this workshop weeks before, making it look and sound really good. The day came round extremely quickly and I was ready to delivery. Two of my assistants came with me to set up my equipment.
My workshop started and I had everybody’s attention. There were a few tasks throughout where people had to do role plays. There was lots of very positive feeling in the workshop and the tasks went down a treat. After the session, I felt on a high like I had discovered what I really wanted to do.
In October 2004 I started my Social Psychology at University of Sussex. I really enjoyed studying people and how human behaviour. I was particularly interested in how attitudes are formed, especially about people with physical disabilities. I liked it so much that I chose to do my final year project on it. Another student and I researched to see if the more contact people had with others who have disabilities, the less prejudice they hold towards them. Studying the actually course material was not easy as it was not on computer. This meant my study assistant had to spend most of her scanning books and articles. Throughout my degree, I had so much trouble chasing up core reading material from the lecturers but because I was determined, I kept battling on. I had to work long days to complete my essay. I had similar problems at university with my social life as it was hard to meet students as the only time I met up with them was at our lectures and seminars.
Throughout university I started writing more workshops. With these workshops, I tried to write them taking into account other people’s situations and how they might view life. I felt one of the main things that I wanted to get across was it is okay to talk about what concerns people. I also thought it would be helpful if my workshops had a few tasks so the attendees can talk about certain topics. I believe it is important for people to feel safe to discuss their concerns. I wrote almost three workshops: Communication with a Difference, Independent Living, and Disability and Personal Relationships. They were quite hard to write because I wanted to make sure they could relate to anybody with a physical disability and/or no speech. However, I was extremely conscious that everyone is individual.
About two years after my workshop at West Kent College, I contacted Scope and made them aware about my workshops. They replied straight away and asked me to put on a training day and run two workshops. As you can imagine, I was really excited and accepted. I treated this as a vital opportunity because if Scope liked it, this would set me in good stead for future workshops. The workshops they chose were Communication with a Difference, and Disability and Personal Relationships. The day came and I was really nervous. When I got there, most of my nerves went because there were some people who had knew me for years. Both of the workshops went down well and generated plenty of discussion – especially in the Disability and Personal Relationships one. The second one was a challenge because the subject area was new to them. I was really pleased on how the day went and the feedback I received was brilliant.
Since September 2007, I have been self-employed running my business. I focus it very much on equality and independence for people with physical disabilities. The reason I set it up was because I have been exposed, throughout my life, to so many situations and observed how different people react to others who have disabilities. Even though, society has got more of an equal view of non-disabled people and people with disabilities, I have always been feeling there has been a power imbalance between both parties. With regards to achievement, a good percentage of non-disabled people do not except as much from people with physical disabilities than those without. I want to be clear that I am referring to people with just physical disabilities. One of the examples in my life is when I was going to university, some people were amazed and react almost in a patronising way. What I am trying to do with my business is to challenge those attitudes. I am interested in working out the actual reason why people have these attitudes. Is it because people are in wheelchairs or is it solely because society has the perceptions in general? These are some of the questions which I am addressing throughout my career.
I have developed more services as well as running workshops. I also visit schools and colleges to work with children and young adults who use communication aids. I encourage them to feel comfortable and confident about using their communication equipment. I am a great believer in being independent and taking control. If children with physical disabilities can convey exactly what they feel and think, this would enrich their lives. I find other people often answer for them which hinder their independence. One of things which I am trying to convey is everyone is individual. Each individual has their identity which consists of their likes and dislikes, how they do things, and the words which they talk with. With someone has a severe disability without speech, they rely on other people to help them to express themselves.
All my work interrelates as I write my workshops using what I have observed from my other work. The main reason I do this is because I really want to make a difference on how disability is viewed. I know changing society’s attitudes will not be easy, but readers might have realised by now that I am real battler. I really do not believe in giving up. I really love what I do as my career and I will not stop working until I have achieved everything I want. If someone was to ask my advice on how to make the most out of life, I would say be determined and do not give up on whatever they want to achieve.
