Sign in. It’s quick, free and it’s up to you.
An account is an optional way to support the work we do. Find out more.
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.
To embed this post, copy the code below on your site
Need identified in 1978, built 2017, sums up Ireland.
@Irish_Bond: Don’t forget, named after a saint, in a secular republic.
@Irish_Bond: spot on. And Sean Fitzpatrick found not guilty after 9 years. This country is a joke!
@Irish_Bond: what was the issue with the demonstrators until 2015?
@lavbeer. For the love of all that’s holy delete your comment or the whole thing will kick off again..
@Irish_Bond: and the counselor wants it closed… Truly too many people living in the stone age
@lavbeer, there has been a campaign against this scheme and bridge ever since it was first suggested by the council. Public consultation is filed under ‘bin’ by our non elected county executive.
@David Vaughan: It’s actually named for St Francis Abbey, the old Smithwicks Brewery as the bridge directly accesses the site which is under redevelopment.
@Irish_Bond: same with the limerick tunnel. It was talked about for 20 years before being opened. Same with the ennis bypass. That opened in 2007 but was talked about since 1990. However the record for talking and not doing goes to blakes corner in ennistymon!!
@WJ Dunphy: One Councillor (Joe Malone ff) said the naming of the bridge after St Francis was welcome boost for the Catholic Church and hoped that the pope would consider visiting it because of their shared name!
The bridge was identified as necessary in 1978 the serve the cattle mart (now moved out of town) and the Smitwicks brewery (now closed) so now we have a river crossing that brings all large vehicles trying to get to the other side of town right through the heart of a town that depends almost exclusively on tourism. Well done.
@Larry Doyle: TII
@john culhane: this is ireland
@Larry Doyle: Spot on , if i could give 100 green thumbs i would.This 40 year old plan plan was concieved ln a time when bring more traffic into the city centre was seen as a good idea.That is no longer a good model and kilkenny should be moving towards more pedestrianisation the city centre rather than more cars.I think this scheme will be looked back upon like wood quay in Dublin , a terrible idea forced through by a short sighted council.
Pure insanity not completing the ring road, that would have not only taken the traffic out of town but would have served easy access to 3 hospitals with massive traffic (St.Lukes, Aut Even and Kilcreene) as well as allowing all the trucks and lorries servicing chancellors mills and other large business to bypass densely populated areas instead of bringing these massive trucks straight through the butts housing area!!
A whole article about a bridge but no picture of said bridge.
@Liam Coyle: Get over it
@Matty Kineven: I’ll try if I’m there again.
@Liam Coyle: That’s because it’s an eyesore.
……on the Nore!
Should never been built , the new set of traffic lights on the castlecomer road within 30 yards of the existing junctionis crazy.I have passed through there several times and the the traffic has been backed up through the barrack street junction.The narrowing of the junction on to vicar street is also crazy.Its actually dangerous and its hard to believe someone planned it
@Robert Woodward: It is unbelievable that the local council had no traffic plan whatsoever for the project. Local councillors flip flopped on their opposition and support of the folly project that was well outdated and a complete waste of money.
Absolutely mind blowing why Vicar Street is not one way coming out of town to Greens Bridge. Traffic at a standstill from Vicar Street up to the Freshford Road
Totally out of character with one of Ireland’s most beautiful cities.
Councillor Noonan, of the Green Party, is unlikely to be in favour of a new road, is he.
@P.J. Nolan: He is in favour of completing the much needed Ring Road
@Larry Doyle: I think you will agree Larry that even the dogs on the street wouldn’t have agreed to this either.
@Patrick Corr: Absolutely
The Eyesore on The Nore
Dreadful waste of money, the completion of the ring road would have sorted much more of the traffic problems in Kilkenny, rather than just one side of the city. HGVs still passing through residential areas and beside schools on the western side of the city.
Ugly monstrosity.
An insult to Kilkenny’s medieval history.
Shame on those who approved this.
@Diarmuid: Polls were done of the local population for this. The comparison of those for the bridge was overwhelmed by those against. The majority wanted the local ring road completed to divert traffic away from the city. But alas ignorance and stubborness prevailed. Hence the protests that took place.
A bridge too far!
As French and European observer and know very well kilkenny.. I don’t think this urban project has a real purpose to develop the city and serve his population for a better life.
Investor will be happy. I am sure about it .
Would I remind that if you go deep to the archive of local newpaper. Mr Hogan say that 40 millions was allocated for the completion of the Ring so why they did not finish since ?
Irish builder / engineer has reputation for the craic but they do not to work and plan like german. ! No vision ! & Tax his local people. Kilkenny is safe by her castle and craft and pubs for tourisme but Council do not say that they let die plenty local business !!!!! and bring the big brand ! Nice….. Some are even not Irish but American. Yes EU is perverse !
Kilkenny is the only town where they bring traffic first to city center !!!! No Sense. Look what Cork did ? Kilkenny must have is star take off now for the non ecologic town !
Why this bridge ?
This is purely for make money and Tax payer will pay the bridge and local business of course. Ask them . They will back up …
2 sites the Old Mart who move to The hub (Outside the town) and free the huge area, then Guinness who bought Smithwicks and let go 300 people then resell the site name : DIAGO to the Kilkenny council. Then Kilkenny who sold it to financial investor for x years with condition to make profit ! What a brick at brack ! .
The bridge has been built for one reason only . Increase the value of the 2 sites and intract investor…and bring brand business…
Tesco would love to come but by chance , they have been kick off !
For history information. Smithwicks request a bridge during they full activity but the council at the time : Say No !!! . No they gone and they build a bridge for what ? Traffic ? Local people ask to complete first the Ring.
Against why this portion of ring road was not complete. Dig the archive and plan and you will know who live there ! You will understand..
This is very poor public management from council and I would say politics !
The things it’s that all local decision are decided by the capital and his parties and brown envelop anywhere . Corruption !
They don’t care a penny for their people !
OUT !
have your say