First of all I would like to say thank you for giving me
this opportunity to speak at the APPG and have Members of Parliament and Peers
here to listen to me, because often people who use assistive technology to
communicate are ignored and do not have a voice.
My name is Nadia Clarke. I’m 23 years old and I live in
Halifax in West Yorkshire. I have cerebral palsy and I’m deaf.
I got my first communication aid when I was nearly 5
years old. I was one of the youngest in
the country and the first deaf and disabled person to have one.
My communication aid is my voice. It is like a learning a language and it takes
years of practice, programming, good support and determination to become a
successful communicator. On my
communication aid I have dozens of pages with hundreds of words. It takes time to say the simplest
sentence. So I need people around who
encourage me to use it as it is physically and mentally hard work. I also need people to give me time to
talk. This speech took hours to write
and programme.
My own journey started when I was actually 2 years old.
My parents were very committed to my communication and
spent hours cutting out symbols to put around the house.
Getting the communication aid was the best thing they could
ever have done for me.
Without it I feel I would lose my life.
It gives me the ability to say how I feel and to discuss
my emotions, what is happening in my life, to have opinions, to be able to
discuss topics, it keeps me safe from abuse, it is vital for my mental health.
I employ a team of 9 Personal assistants and I interview,
recruit and induct each new PA. My aid
is vital to this.
I went through mainstream education and have a level 2 in
health and social care. The aid was
carefully programmed to assist me and thanks to helpful staff I was able to be
included in all the lessons.
I use my aid to chat to new people especially if they are
good looking guys, to plan my travels, to go for job interviews, to ask for a
drink at the bar and to share news with friends.
I can also access the computer, write word documents, use
social media, use environmental controls and use a phone with it.
The communication aid costs around £10,000 including the
insurance. This has been partly funded
by health, education and social care. It
needs a mounting system and ideally wheelchair services, occupational therapy and
speech and language therapy should all be involved.
Some of the challenges have been – few local specialists
and lack of Speech and Language Therapists with the expertise. My own area has been very poor in supporting
my AAC other than a technician there was no one around with the knowledge. There are few communication aid users in
Calderdale which is such a shame as I see lots of young children who would
benefit. Luckily my parents have worked
really hard to understand Augmentative Alternative Communication and has helped
me a lot.
Many people have little awareness about alternative
communication. I find that people are nervous to communicate with me, they will
speak to my Personal Assistant and sometimes even ignore me. Because it takes a long time to make a
sentence I often get left out of conversations.
This means that I feel isolated and a bit fed up at times. Some people treat me like a child because I
don’t have speech.
English is hard for me and other AAC users as it is not
our first language. This is a real
barrier to achieving in education and passing English exams. I have had problems recently with a college
who failed me on my English and did not have the awareness of AAC and did not
meet reasonable adjustments.
There are times when the communication aid breaks down
and this is frustrating. Sometimes I can
be without my aid for a few weeks and this is extremely difficult for me.
Children and young people who have a speech impairment
need encouragement, motivation and support to use their aids. Talking does not just happen!
One of the motivators for me to use my aid has been
1Voice – Communicating Together. A
charity that supports families whose children use communication aids. As I grew up I have met some inspiring
disabled people who use aids and who are role models who attend the
events. I am now a role model for
1Voice. This has made a big difference
to me.
It is my human right to be able to communicate and yet
there are very many young disabled people out there whose parents and schools
are unaware of the importance of communication.
Most of these children never receive an aid.
I think all disabled children and young people have the
right to communicate and have their voices heard, and I would like to see the
government do more to support them so we can be involved in our own care, stay
safe, be in control of our lives and make our own choices.
If you are interested and would like to see my aid come
and talk to me later. Thank you for
listening.
