Thursday 3 December 2015

my speech about experience AAC users in House of Parliament

2nd December 2015

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.