Wednesday 29 August 2012
This week, the Paralympics begin. London will again play host to some extraordinary feats of strength, courage and determination - this time, all from disabled athletes and sports-people.
Closer to home, disabled people in Guernsey and Alderney are being asked to share their own stories. The focus is wide, much broader than just sporting success. This is a chance to showcase the real diversity of disabled people in the island.
A "Disability Survey" is now taking place, the follow-up to the island-wide "Health, Wellbeing and Social Inclusion Survey", which was carried out in the spring. This stage of the work invites disabled people and carers to share their experiences in depth. The States are hoping that another 50-100 people - including people with long-term or age-related health conditions and people with mental health issues - will step forward to take part in the survey.
The survey is wide-ranging, looking at everything from studying to social life; health and wellbeing to housing. It gives people the opportunity to talk about their insights and ideas; to inspire the States and the public to take a fresh look at disability.
Deputy Jonathan Le Tocq, Chair of the Social Policy Group said:
"Policy Council have commissioned this research because we believe it is vitally important to understand the changing circumstances in the lives of disabled islanders today.
"All the research will inform the Disability and Inclusion Strategy, which helps the States to plan the future of services and support for disabled people and carers.
"We hope that people with many different experiences - success stories to tell as well as challenging situations - will come forward to share them. Having cared for my elderly and disabled parents for 7 years I am well aware that we sometimes needed to shout in order to get heard; similarly when we found solutions to problems it was good to share this with others who could benefit too. You may not like or identify with the label 'disability', but if you have a long-term condition of any kind, and your day-to-day life has been affected, this is your chance to be heard and we would strongly encourage you to get involved."
Four participants share their stories:
Jenny is the parent of a young adult with severe learning disabilities. She answered the survey over the phone.
"A lady phoned me to ask if I was happy to answer some questions, and we arranged a convenient time - I was in the middle of painting at the time of her call!
"The questions were very detailed and covered everything I could think of, but what I thought was important was being asked, on a few occasions, if I had anything else to add. This allowed me to share a couple of more personal issues of importance to me and my family.
"The lady was very pleasant and patient, as I had to think about some of the answers and she reassured me that it was ok to take as much time as I needed.
"The survey is important to me as it has given us an opportunity to have a voice about life with disabilities and all that this entails. Having your voice listened to is so encouraging. The survey will show that there are other islanders who are experiencing the same issues, and together the information gathered will be more powerful in making change happen."
Nicky has a mental health issue. She has been involved with the survey from the very start, when she was part of a small focus group of disabled people who helped to design the original questionnaire.
"The most important thing the survey asked me about was mental health - but I'm biased! Mental health is a disability in as far as it does affect your life and working ability.
"The survey is very, very important to disabled islanders and their carers as their life is hard enough as it is. In a perfect world, islanders and the States would be nicer to disabled people - and when I say nicer, I don't just mean face-to-face type thing, but helpful with funds as well. And so with some extra help, or at least some extra recognition, life could be better.
"I did the survey myself over the phone, and I also invited the researchers to come along to one of our support groups. The lady I spoke to was caring and kept telling me that I could stop for a rest or whatever. She was also very friendly and we had a little joke when we had finished. This is important as it can be scary talking to someone on the phone. I did take longer than was expected to answer the questions."
Aindre has been a campaigner for the rights of disabled people for over a decade. He was also involved in the focus group that helped to design the survey.
"I gave input into the type and design of questions in the first questionnaire, as Disabled People are, and should be seen as, 'the experts' in this subject area.
"I found the survey quite long, and this may have been an issue for anyone with a short attention span or tiredness. However, the survey is important as it will give the States the information it suggests it requires to make the business case for funding different situations which affect the daily lives of Disabled Islanders.
"The survey gives a voice to people who are 'Disabled' and their Carers. It may create a feeling of being valued for their input into the process as a whole."
Peter has four children, two of whom have learning disabilities. He took part in both stages of the research.
"Two of my children are on the learning disability register, but that is where their similarities end. Their needs and abilities are very different, and the survey allowed me to focus in on those areas where I felt the needs of each child could be better served, as well as those areas which have limited potential to improve their life experience.
"As I have two children with disabilities, I had to go through the survey twice, once for each child. The surveyor was very patient and happy to repeat questions, and the experience throughout was consistent, professional and courteous.
"This survey will provide statistical data to evidence the needs of a significant minority of the population whose voice often goes unheard. The data will be enriched by the real experiences of service users, showing their needs and the serious shortcomings of current provisions.
"This solid base of data should lead initially to an acknowledgement from every States member that more has to be done; then tangible, visible improvements in services and greater integration of those with a disability in the community. People should realise that not everyone with a disability is in a wheelchair and not everyone with a learning disability has Down's syndrome.
"Ultimately, there should be disability discrimination legislation that can be sensibly applied to enshrine the human rights of those with a disability without requiring the States to tear up the cobbles in the High Street!"
How to get involved:
The survey is being carried out by BMG Research on behalf of the States. Anyone who wants to get involved can contact them directly on 0121 333 6006. Anyone who has any questions or concerns can get in touch with Emilie Yerby, the Disability and Equalities Officer, on 725241 or email disability.enquiries@gov.gg.
The results of the full survey are expected in autumn 2012. These will inform the Disability and Inclusion Strategy, which should be published early next year.
-ENDS-
Contact Information
BMG Research will be working with the University of Nottingham on this research project. Any general enquiries regarding BMG research should be directed to:
Jenna Allen
Tel: 0121 333 6006
For further information and to arrange interview please contact:
Emilie Yerby, Disability and Equalities Officer
Tel: 01481 725 241 (ext 4157)
E-mail: eyerby@hssd.gov.gg
