I know the year of your sweet sixteenth hasn’t been what you thought it would be. Spending the best part of the summer in hospital is never ideal. I’m happy to let you know that there is light at the end of the tunnel. You will get into the real world and away from your special school and everything it represents to you.
Another year of being told what you can do and can’t do will become a very distant memory. Your hopes and dreams of becoming a real person will happen you will be able to do everything that you wanted to do. I know it’s hard to believe it right now but you will meet like-minded people who believe that regardless of your level of disability that you can lead a very full and meaningful life.
The pure annoyance of having to wait an hour after school has ended for transport home will be of huge benefit to you in the end. This is where you will hear first-hand how you can live independently from Florence who you will later discover was one of the founders of the Independent Living Movement in Ireland. As time passes you will become increasingly aware that there is a life outside the four walls of the building that houses your special school and indeed the medical centre that has become a second home to you for the last eleven years. As time passes you will discover that you don’t have to do as the so-called professionals/experts want. I know you have always told your parents that you just want to do what other people do and be treated equally.
Being treated equally will be a slow and somewhat frustrating journey but one you will have a great deal of input into not only for yourself but for many others as well.
One big achievement for you will be the fact that you will sit your leaving certificate and that you without question prove people wrong and you will survive outside the four walls of the special school for more than twenty-four hours despite your principal’s harsh words to your parents.
By the time you reach your early twenties you will come across many different types of people who will respect your view and choices as an individual.
You will become a well-known disability activist, both in the local community and on an international level, representing both yourself and the disability community. This will be on various different topics ranging from accessible transport, housing, assistive technology, and personal assistant support.
One thing you will absolutely love to hear is you will have your own home. When I say home I don’t mean a group home, I mean literally your own home where no one else will tell you what to do unlike in your special school. As a result of living independently you will actually become a line manager of your own personal assistant service. You will graduate from that service to become a legal employer with all the responsibilities of such, dealing with taxes and insurance to mention a few. This will be hard at times but will give you greater independence and most importantly control over every aspect of your life. I know this is something that it is hard to get your head around now but it will happen, just have belief and determination that it will be okay, push through people’s ignorance, and you will most definitely come out the other side. Whilst living in your home you will have a very good network of friends who will help you experience nightlife (i.e. going to nightclubs and the pub). This will demonstrate life has a lot to offer just be open to experiencing it, if you are open then anything is possible.
You have always been told that you are quite stubborn and uncooperative, especially when it came to saying no to different types of support for the seating in your wheelchair. You will discover that there are two types of ways looking at your disability – the social model and medical model. The medical model is what you are experiencing as a result of being so-called educated within the special education system. As the years go by your mind-set will be completely opened and you will see that you are not alone. This will become a lifeline to you. I know you feel very isolated at times as you are seen as a troublemaker mainly due to the fact that you are not afraid to speak out against what you don’t believe in.
Solely as a result of your outspokenness you will create employment opportunities for yourself by going into different settings and talking about your experience of living with a disability. You will be a guest lecture multiple times in Trinity College. You will also have the honour of becoming a chairperson of a national disabled persons’ organisation (DPO), the very place where independent living started in Ireland. This will be a great platform to work on issues that have been very close to your heart both as an individual living with disability and breaking down barriers for many other individuals. You will be lucky enough to secure employment with the same organisation to this day as a peer mentor.
You will see that having a disability to your degree is not the life obstacle that you once believed it to be. Having Cerebral Palsy is not a picnic by no means and has thrown up many curveballs over your life now and in the future. Being able to walk independently used to be an obsession of yours, over the years. You will see that this is not the be all to everything. Despite your level of disability you will achieve quite a lot that will far out see other people’s expectations of your achievement. You will recall another parent of a disabled child telling mam how they would be happy if their child can read. Thankfully you were born into a family where expectations were much higher and they had much higher expectations for you and to lead exactly the same type of life as your brother who doesn’t have a disability. You will have achieved that reading goal, as you read non-stop. People often say that you are an inspiration. I know this is of annoyance, to say the least, but you have and will continue to change people’s perception of what living with disability means by quite simply just being yourself!
The battle that Dr Reilly and Mam had with the school/clinic to ensure you get speech therapy every day will pay off massively. It is your speech that helped you become the person that writes this letter as you are going to rely on assistive technology to enhance your quality of life and indeed your professional work.
To summarise, I feel you have achieved quite a lot already by being yourself, just hang on in there! Life has a lot more in store. I am not saying it’s all fun and games but you will enjoy a lot that it has down the track. My best advice to you is continue to be the person you are, hold your head up high, speak out when you think it’s appropriate, and needless to say to hell with any begrudgers!