My Talk about my disability and how I hope to break down barriers.
Hello everyone my name is Rachel I am 37 years old, I was born on the 16th of June in 1980, I was born in a little country cottage hospital in Leek Staffordshire. This was the first time my Mum and Dad knew that there was anything wrong with me as my Mum did not have any scans while I was in her womb. As you can probably imagine when my Mum and Dad were told that their new baby daughter was not a perfectly healthy baby they were totally shocked, they both started worrying about what the doctors meant by this so eventually when they had time to come to terms that their baby was not perfect my Mum began to ask questions.
The first question was to ask what they meant by her baby not being perfect, to this the doctor replied well Mrs Pearson your daughter has a condition called Spina Bifida which basically means she has a split in her lower spine and she will never be able to walk or talk or even sit up on her own. When my Mum and Dad heard this they were totally shocked yet again. But this was not all of the news. because after a few days had gone by the doctors turn to my Mum and Dad to tell them. That they could leave me in the hospital for the doctors to either adopt me to another family. Or to keep me in hospital and give me medicine that would slowly kill me. My Mum just turned to the doctor and said. No way am I leaving my baby in hospital just for you to get rid of her. She is my baby. And she will be coming home with me. When I am able to go home. This was where my Mum’s and my fight began. As soon as we were well enough. my Mum and Dad took me home. and my Mum started to look after not only my needs as a baby. But as a very ill. Baby. Because I had a gap in my spine that had to be kept dry. and clean. All the time. I was drugged up on pain relief.
So my Mum had to wake me for my feeds and she even had to do physio on my legs. Because when I was born I was folded to in a L shape. So my Mum had to gently lie me on my tummy. Over her legs. And gently. And very slowly. Had to try to get my legs to go straight. Basically all of my personal. And medical needs. Were done by my mum. Due to the doctors not wanting to help her. Over the years of my life. I have had to have a lot of operations. Starting with having a tube. Fitted into my head called a Shunt. This is to drain the build-up of fluid on my brain. This is known as Hydrokephalus. Or water on the brain. Followed by. Hips. Feet. Back and a few other operations. Due to the Spina Bifida I also have problems with bladder and bowel control. therefore I have had to a couple of operations to fit a catheter into my belly button. this is called a Mytrophanoph. and I had an operation to fit a Stoma to my right side of my stomach. This helps me control my bowel. I have to have a washout three times a week to clear my bowel out. This means I have to be in my bathroom for up to six hours. for three days. Which can be very tiring. And very stressful at times. As I can't do this on my own. And especially when I am only a young person. Who wants to go out with friends. Or even just do any kind of work. I know I have had these operations. To help me lead an independent life. And they do help me. But I have struggled to come to terms with the fact that I have to stay in. And do these medical needs when everyone else is out enjoying themselves. When I was younger my Mum tried to get me in to my Sister’s nursery. But they turned my mum away. Because they could not deal with all my needs. So I was at home with my Mum until I was three years old. This is when I started school at Saxon Hill School. In Lichfield . This is a special school. For Physically disabled children.
I enjoyed school at the time very much. Although I did find some subject very difficult. Due to my condition. I was never pushed to my full potential. So when I came to take my G.C.S.E’s. I was only put forward for English Literature and language. When really I needed to be pushed more. To do maths and other subjects. Because in my later life I have struggled to get anywhere. Especially when trying to find jobs. I don’t know about other people with disabilities but I have found over the years that I have had to fight for everything whether that is to just be accepted or whether it is due to fighting to live. I mean even when my Mum brought me home from the hospital even my own family especially my Dad’s family did not know how to cope with my disability, whenever we went to visit them they used to ask my Mum if I wanted a drink or something to eat instead of asking me, until one day my Mum told my Grandma to ask me as I was sat on the floor right in front of her.
From that day on my Grandma has learned to actually ask me if I want anything which is a lot better but there is some of the family that have always had a problem in talking to me or even treating me as a human being which has obviously upset not only me but my Mum as well. Throughout my school days I was very segregated due to never playing with able bodied children, all my peers have always been disabled and now that I am of an age to get out in to the big wide world I find it extremely difficult to approach none - disabled people, so when none - disabled people look at me as if I have three heads or something it hurts because I just want to get on with my life just like them. I still have the same dreams about what I want to do with my life but I know that I have always had to fight where ever I go and whatever I want to do. At the age of seventeen I left school and went to Cheltenham to go to a special college for Physically disabled young people this is where I trained in Performing Arts I took a BTEC and National Diploma in it which took me three years to achieve, while I was there I learnt to drive with a special adapted car then I met a boyfriend this was to be my first serious boyfriend I had ever had due to not being able to go out socialising.
After I had finished college at Cheltenham I decided to go and live back home with my Mum for a while, then I eventually decided to move down to Gloucester with my boyfriend and his parents. After a few months we moved in to our own house together and after two years we got married, we were married for eight years then in April 2010 I left him to move back up to Burton this was due to the marriage breaking down. I lived with my Mum and step Dad for six months then I moved in to my own flat in August 2010, I was there for 2years with another man called Tom, then on 19th June I broke up with him and met Marc who I am with now and very happy with. I moved in with Marc on 12th May (2014). We spend almost all the time together as I'm supposed to be his carer due to him having Epilepsy and ASD (Autistic Spectrum Disorder). He was diagnosed as having Fibromyalgia with None Epileptic Seizures on Thursday 13th November 2014. But on the bright side his Dr thinks he is no longer Epileptic after 40 years. Over the years I have studied a lot of things such as Performing Arts, Sign Language, N.V.Q in Teaching Assistant, an introduction into counselling. I am also a qualified radio operator. So I can now help out with radio comms for RAYNET which stands for Radio. Amateur. Emergency. Network. We help at Marathons, Horse Events and Field days and more. Over time I have come in to contacted with some very ignorant people who just say really discriminative things to me but it’s not only the things people say to you that hurts it’s also what people do to people just because they find it difficult to except different kinds of people.
I have tried to apply for jobs in super markets in residential homes for older people and shops all of these jobs. I can do but unfortunately I have always been told no because of my disability, this has knocked my confidence so low that it has taken me a long time to believe in myself again and to be interested in any kind of college course. I now have found the strength again to fight for my right to lead an independent life. It is now three years since I graduated with a Foundation Degree in Dance and Theatre Arts, so most of my time is spent volunteering for RAYNET and doing these talks with Marc. I would like to do my own thing sometimes but it's getting people to give me the chance really. Eventually I would love to open my own Dance/Physical Theatre Company for disabled and none disabled young people in and around the Burton area to show people that just because you may have a disability it does not mean that you cannot follow your dreams. As I mentioned earlier I did live in my own flat and to do that I had to have a care agency come in to me every morning and every other night just so I could live an independent life and so that I can run my life the way I want too not how other people want me to live it. Like I said earlier I now live with Marc and we don't have any other support so we look after each other and just get on with every day life, which at times can be stressful but I wouldn't change it for the world now. Some days we are both too ill to go out anywhere so we just basically stay at home and chill out. Myself and Marc got married three years ago in June on the 13th, we then went on honeymoon to Cornwall a week after we were married. While we were there we went to the RSPCA meeting a few dogs, we finally met a lovely little white Staffordshire bull terrier called Tye.
We had him with us at the holiday cottage until we came home then we arrived home as a family. Since then we have had lots of care agencies to help Marc care for me as his disabilities have become worse so he’s no longer able to help me. Unfortunately due to lots of issues we have now got social services carers and an agency, which seems to be working well apart from a few issues with certain carers. Since leaving college I have tried to get a few voluntary jobs with schools and day centres but unfortunately to no avail as yet! Although I am volunteering alongside Marc at our local church for Leonard cheshire supporting adults with physical disabilities and learning disabilities to enjoy games like dominoes,cards indoor bowling and much more. In my spare time I am going out with Marc to lots of different places as I now have a Mercedes Benz sprinter van that I have had to wait for for about two years. I never realised how independent my vehicles made me. I hope you have enjoyed my talk and I would be very happy to answer any questions that you may have. Thank you for listening.