A Birmingham charity says more needs to be done to support people with complex disabilities so they are not forgotten in an interview with Birmingham Eastside during Deafblind Awareness Week.
Dale Lyons, Regional Arts and Wellbeing Coordinator from Birmingham Sense, which helps over 400 people with complex disabilities, including deafblind individuals in Midlands, said:
“It is so important that we increase awareness of this because we need to put the support in place. Whether they’re born deafblind, or it is something that develops throughout life, you need to have support in place. In Sense, we support people who are deafblind, but we’re aware that there’s so much more that needs to be done to support people in the community and make everyday things more accessible and inclusive for these people.
“Also, make sure that disabled people aren’t left behind.”
A deafblind person is not usually totally blind or deaf. It is a combination of hearing and sight impairment that affects a person’s abilities to communicate, access information and move around.
“Many individuals who are deafblind do have some residual [remaining]sight or hearing, so there are different ways in which they communicate. Some people might use BSL or braille for reading.”
So as the pandemic had a “massive impact” on people with deafblindness the Regional Arts and Wellbeing Coordinator said that for some people, new rules have been hard to follow:
“A person who is deafblind or has complex disabilities might not be able to follow these measures. It’s so important that we have this understanding of how disability and being deafblind affects a person. “
If an individual is deaf and they lipread, communicating with others becomes difficult when someone wears a mask, which could make a deafblind person “feel awkward,” Dale Lyons said.
Also, some people with underlying health conditions had to self-isolate at home for weeks, making a deafblind person’s everyday life “so isolating and lonely.“
“So it’s how we can create opportunities to bring people together, enable them to have friendships and live the everyday life that they want,” she said.
Sense supported deafblind people and their carers during the pandemic by launching “over 100 free, accessible and inclusive art, sport and well-being activities”, Lyons added.
Tanya Rabbe Webber has run an art club to combat loneliness and isolation, and Lisa Simpson has taught dance. With Sense support, a performance maker with a hidden disability has produced a series of podcasts discussing the arts in ‘The Zara show’.
The latest data show that almost 400,000 people live with deafblindness in the UK; this will be enough to fill Wembley Stadium five times. Still, a report predicts that by 2035 the number will increase to 600,000 people.
For the future
The Deafblind Awareness Week runs until 3 July, but Sense plans to launch a holiday scheme once the restriction eases up.
“It is a great scheme, and it’s an opportunity for them [deafblind]to do things that they never get to do in day to day life; people also have a choice over what they do and when they want.”
For the future, when coming out of the pandemic, Dale Lyons says that it is essential to increase awareness of deafblindness, remove physical barriers for disabled people and give equal opportunities to live and access services.
“ We’re so passionate about the fact that no one should be left out of life, no matter how complex their disability. They should have equal opportunities to achieve whatever they want to.”