Author: Nadia Clarke
I worry about the future as I have been told that my funding may not be enough for me to have the right amount of support to enable me to live my life. This will leave a huge impact on my life as I live independently with full time support from my PAs.
It is important to me that I have full time support for the future, as both of my parents work full time and I am hoping to attend university this year or leave home to live independently. I don’t want my parents to PA for me as no other 20 year old has their parents looking after them, why should this be different for me? I want my parents to be parents to me and not my PAs, I do not want to feel belittled and to be made to feel like a child. I have my own life and my parents have theirs, they need to work as we have a large family and both their incomes are needed for the household.
I have worked so hard and feel lucky to have employed a fantastic team of qualified and skilled PAs. This as you can understand has taken a lot of time and consideration to build bonds and trusts with strangers but now I have fantastic people who support me on a daily basis. I live at home with my family but as time passes I long to become more independent, attend university and hopefully move into my own accommodation with my team of PAs. My parents campaign and do there absolute best to try and stop my budget cuts but this can be tiring for them and takes up so much of their time.
A couple of months ago I was so angry with my social worker because when I try to communicate with them they do not understand about my life and what I am trying to explain to them about my team of PAs, who support me all the time and the hard work that we have put in to build bonds and make relationships work. If my support is cut I will feel depressed and frustrated because I can’t do everything I intend to achieve and complete on a day to day basis; I will be isolated and bored. This makes me cross as I see others completing University degrees getting jobs and leading life to the best of their ability. I on the other hand need support with achieving these simple things and without it I will not be able to attend university or be able to go out to work.
Why should I have to go to a care home or have my parents be my PAs? I am an intelligent, bright young lady who knows what I want in life. I don’t want to go to a care home with other disabled people put into a room and be forgotten about left to watch TV all day because the carers don’t have time to take me out or complete my work no thank you as we all know that that happens in care homes.
I want my own life and choices I would rather die than be put into that situation because this I feel this is discrimination. It is my human right to a life and not be left on my own at risk. I want to make a difference to people’s lives and support those disabled people who do not have a voice. I can only do this with the right support. I really want to achieve and contribute to society and have a job.
If I no longer have my team of PAs I will feel lonely, isolated, bored and depressed; my PAs are my life and my world without them will be dull, they mean everything to me and are such a huge impact in my life. My team of PAs are trained in all areas with British Sign Language, my Cochlear implant, my Dynavox communication aid, my wheelchair, with moving and handling me in the correct way so that I am comfortable and with my drinking, eating and personal care.
Now they are talking about putting an alarm system in my house for when I am on my own, and having agency staff coming 4 times a day to put me on the toilet.
Thinking about my life, it just does not make sense and is confusing. I have believed in rights and being in control, but I now feel out of control.
The publisher is the Centre for Welfare Reform.
My Rights © Nadia Clarke 2013.
All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.
This report outlines the power of alternative systems of communication and was written by Nadia Clarke following her Winston Churchill Travelling Fellowship to the USA in 2012.
Nadia Clarke describes her success at finding work as a young disabled and deaf woman, and the challenge of getting Access to Work support.
In this film Nadia Clarke explains how important human rights are to all disabled people.
Nadia would like to take a Disability Studies course at University. Katie Clarke writes about the barriers her daughter is facing and continues to face to realise that dream.