THE CONDITION OF deafblindness has caught the public’s attention as the Oireachtas is due to hear calls for it to be recognised as a distinct disability.
There are an an estimated 10,000 people in Ireland who are both deaf and blind, but healthcare workers are hoping for more clarity on the issue to allow them to develop services for deafblind people.
#ImNotInvisible was one of the top trends in Ireland this evening on Twitter as people discussed the condition.
In an emotional interview this evening, Carol Brill spoke of her own experience, and explained how she is going both deaf and blind due to a rare genetic condition.
She told The Last Word with Matt Cooper on Today FM of her diagnosis with Usher syndrome at the age of 21, a genetic disorder that causes the loss of both hearing and vision, long after the symptoms first started to appear.
Carol described this prospect as daunting.
She was wearing hearing aids by the age of four, and by age 10 her parents were told “in a very blunt and shocking way” she was going blind and would have to be sent to a school for blind girls.
It wasn’t until eleven years later that the two conditions were linked.
She now wears special hearing aids that use Bluetooth technology connected with her phone to allow her to comfortably make phone calls or follow map directions, but cochlear implants will be needed in future.
Carol currently also has a very limited range of vision. While speaking to Matt Cooper, she said she could only see a tiny portion of his face, and had to ‘read it like a newspaper’ to build up a picture of what he looked like.
This limited sight is fading fast.
“I would be very lucky to see my daughter make her communion next year,” Carol said, adding that they have already picked out the dress while she still retains some of her sight.
You think about the debs, her wedding day. It’s just destroying.
Carol said that while respecting people with the individual condition, it’s “totally different to people who are completely blind, and completely deaf.”
This is not one and one equals two. This is one and one equals God knows what.
However, she is determined to fight for proper recognition of the disease, that would better allow for her progress to be monitored, and allow her and others gain access to the vital services.
“I was the right person to get [Usher syndrome]. I’m not the sort of person to sit around and accept things as they are.”
The Oireachtas health committee is due to discuss the condition of deafblindness tomorrow, and to hear calls for it to be recognised as a distinct disability.
“Impairments in vision, coupled with the loss of hearing, make dealing with the condition of Deafblindness an extraordinary challenge,” chairman Jerry Buttimer said.
The Committee will explore tomorrow how policy can be enhanced to provide the appropriate services for our Deafblind citizens, including greater recognition of the condition as a unique disability.
Laura English of the Anne Sullivan Centre, who along with Carol Brill will attend tomorrow’s discussion, told The Last Word that services were previously aimed at those with congenital rubella syndrome, but this condition has largely disappeared in Ireland due to the MMR jab.
However, thousands of people in Ireland are deafblind, and she believes more recognition of the condition will allow the Ann Sullivan Centre to be able to develop services to allow people like Carol to live a comfortable life.
The livestream on Oireachtas.ie of the health committee tomorrow will feature an on-screen signer.
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