The Struggles of Deaf Children and their Parents in Ireland

Ryan Tubridy recently spoke to our Andrew Geary about the challenges of growing up deaf in Ireland along with other personal experiences. Check out the full interview below or read the transcript.

Episode Transcript

RTE Radio1

Ryan Tubridy Show

2021 April 26

The Struggles of Deaf Children and their Parents in Ireland

Ryan:  At 9:24 this Monday morning, great to have you with us.  The text is 51551.  Obviously the stripped down Oscars-I quite liked them the look of them.  It looked like they were in the gorgeous cinema in Rathmines, the Stella.  Isn’t that the one?  Beautiful.  It just had that feel to the old school opulence.

And the pandemic was the topic of discussion there but something else that sparked important discussions in the lead up to these Oscars were a number of films highlighting disability such as Sound of Metal which won two awards.  And I was talking about this film after I saw it last week quite a bit particularly the lead role and just the impact it had on me and the world and the deaf community that I just don’t know enough about.  

And Andrew Geary was watching this with a particular interest.  Good morning Andrew, nice to talk to you.

Andrew:  Morning, Ryan.  Thanks for having me on.

Ryan:  Are you well?

Andrew:  I am enjoying the good weather the same as yourself.

Ryan:  Thank goodness.  I suppose I want to begin our chat if you don’t mind to go back to the 19th of November 2008.  A great day in your life as the two lads arrived into your world Calum and Donnacha, twins.

Andrew:  Yup, we had twins born that day.  We’ve two older boys Barry and Matthew, and Calum and Donnacha were born on that day.  And anyone that has twins or multiple births you know that’s a really special day in anyone’s life.

Ryan:  Of course.  And the two lads were I presume swimming along at the same pace and in the same pool as it were for a fair amount of time.

Andrew:  Yeah and I suppose that links in with your story, Ryan, what happened in 2011 was we found that Calum was deaf.  And a few months later we found out that he had no auditory nerve.  Therefore that stopped the cochlear implant being a choice for us as a family to make.  

We did travel the world to try to give him some environmental sound through another implant that’s known as an auditory brainstem implant.  However, we found out despite the great work of people in Manchester, London, Warsaw, and Los Angeles that that was completely ineffectual.  All throughout that journey, we, Helen and I and our kids, we were learning sign language and we’ve been welcomed with open arms into that deaf sign language community.

Ryan:  My question is to go back to 2008 the lads were born and then 2000-2011, three years later, you discovered that Calum was deaf.  How do you know when your baby is deaf?

Andrew:  I suppose the benefit today Ryan is there’s newborn screenings so there will be a test on that part.

Ryan:  Really?

Andrew:  That wasn’t in place in 2008.  So every child born today will be tested before they leave the maternity ward and that wasn’t in place.  Ireland was one of the last countries in Europe to bring that in, but it was successfully brought in I believe in all parts of the maternity sector now.  

So Calum would have passed kind of one or two tests at home but we knew something was wrong.  As parents he wasn’t our first child and we had his twin alongside him and basically he’s such a bright visual child he passed hearing tests believe it or not even though he had no auditory nerve so he’s never heard a sound in his life.  But he has vision in the back of his head.

He has just unbelievable, spatial awareness and they had to put him under anesthetic and it came back then that he was completely deaf as deaf as anyone can possibly be.  There’s no one percent.

And then they did another check in Beaumont a few months later to confirm that he was missing his whole auditory nerve.  

Ryan:  What does that do to you as parents in terms of being told that news?

Andrew:  It’s very similar to watching that movie.  You go through those grieving stages and that anger and that acceptance, and then you go to love it and it’s the same as any parent of a child you bring this absolutely perfect bundle of life into your world and then you’re defined by what you’ve seen before.  And then a new definition comes in and then deafness becomes part of Calum’s identity and that’s where the next part of our journey took off I suppose.

Ryan:  Tell me what you mean by defined by what you’ve seen before.

Andrew:  I suppose I had no experience of deafness whatsoever.  My mother can remember me playing with some deaf kids when I was a child, but I can’t remember that myself.  You just don’t know what it is to live in that bubble because the deaf live in a total island on our island, and until you come into that island you’ve no idea what type of life it is.  And it’s the same for any parent with any special needs or different needs or different ability child.  You go into that world and you have to open the door and take one baby step at a time until you understand what journey you’re now on.

Ryan:  You said that you go through the phases of grieving almost and you’ve mentioned anger.  What would you have been angry about?  

Andrew:  Processes and maybe the wants and dreams that you have your child.  You hope that they haven’t been taken away.  And once you come to accept that, then you grow into that role as the parent of that’s I think that’s part of every parental journey.  We all want the absolute end of the world for our children, and sometimes if we think there’s a little barrier going to be placed in their way then we find that how am I going to adapt to get help you know, Calum, to get over that hurdle.

Ryan:  I noticed in the film Andrew, Sound of Metal, when the main character Ruben goes to the house for the deaf community and he meets Joe, the character Joe, who is a child of deaf adults himself- Coda as they say.

Andrew:  Yeah.

Ryan:  And there’s a sense in there that says that they don’t like cochlear implants and they barely like hearing aids because they feel that you’re trying to fix something.  And if you’re trying to fix something therefore something must be broken.  And some people in the deaf community say we’re not broken, this is what we are, this is who we are, and you don’t fix something that’s not broken.

Andrew:  Yeah and that’s a huge cultural question that’s much deeper in America.  I have a lot of deaf American friends.  I do think on this side of the Atlantic it’s much more open.  We mix in one community.  Calum goes to school with kids with cochlear implants and hearing aids and his friends, he has some deaf signing friends and he has some friends with cochlear implants, and that is a question that did come in and every deaf person must answer that question for themselves when they come to adulthood.  I suppose they made that choice as an adult character in that film and parents sometimes have to make that choice.

And I can remember you had a very famous deaf lady on with you that had twins and you asked her a similar question.  And again, I think it’s just parents want the absolute best for their children, and that’s all we want.  The cultural issues…I have a mantra in life Ryan, I don’t let anyone define me and I don’t define anyone else.  They define themselves and if they want to tell me what their cultural, community, language, beliefs are it’s up to me to accept that.  

Ryan:  I’ll come back to Calum in a second but on the subject of the cochlear implant we got an email from a dad the other day on Friday to say oh God that film was great but it gave cochlear implants a terrible name because he kind of got a faulty one didn’t he, so you can’t really hear.  

In fact I’ve got a clip from the movie of what he’s hearing and it’s very…this is what I think freaked me out about this film because I got terrified for him because he thought he could get his hearing back, but actually here he is walking down the street and this is what his experience with the implant was.  It didn’t work.  This is what our correspondence said last week…when it works it’s a dream, when it doesn’t work this is what it’s like.

NOTE:  Movie clip was played.  Noise.

Okay?  You get that sense Andrew?

Andrew:  Yeah, yeah, yeah.

Ryan:  And you know there’s a few other bits in it like when the doctors are telling him how the implants are going to work.  I’ll just give you this sense…

NOTE:  Played clip.

Now you can imagine he’s put all of his money into getting this thing.  He’s thinking he’s going to have this clear sound because he’s a great actor, his eyes are looking at the person going…it’s like the worst phone signal of all time forever.  Yes, I thought this was terrifying, Andrew.

Andrew:  Yeah, I wouldn’t know a whole lot about cochlear implants.  We didn’t go down that road, but what I do know is there’s a huge amount of programming Ryan and tuning.  Like that was probably as I said to your team just in my personal opinion and you’d have to speak to a parent from Our New Ears, the group that represent the children, they’d better represent the perfect view, but there’s a huge amount of tuning and programming and that was one of the weaker parts of the film’s script.  

There is, and again there’s a big difference in the child getting an implant and an adult getting an implant.  A child would never have heard sound before so the brain, that part of the brain, would be programmed completely different in Reese’s character.  It’s a person that goes deaf at his age and a child that’s born.  The brain hasn’t been programmed to sound so it would be completely different.  That’s just my personal opinion.

Ryan:  No, no, I understand that.

Andrew:  And I do think there would be better parents out there.  But cochlear implants do work for a lot of people, but your team were talking to me about that and I said just my personal opinion that was probably the weakest part of the film.  The choice was it was genuine but the activation and the programming and tuning is a very long process.

Ryan:  Let’s return to Calum.  Tell me is he 12 now?

Andrew:  Yeah, 12.  He’ll be 13 on November 19th.

Ryan:  Twelve-thirteen is a very important age in a child’s life because you’re really starting on the road to adulthood at that point, and you’ve got an awareness of the world that is generally underestimated I think by society at large.

Andrew:  Oh yeah.

Ryan:  So where are you now with him?  Where is he now with his future because he’s now of that age where he’s mature enough to start articulating himself?

Andrew:  Something happened a few weeks ago, Ryan and it basically shook Helen and I to the absolute core.  Calum is such a bright, humorous, he’s such a laugh, a sense of humor, he just loves life, loves people, loves going to school, loves his family, his dogs, his walks, cycling.  

But he said to us the other day, you know just a few weeks ago just such a coincidence your team rang me that week and he said, mum, dad, I have something to tell you.  And we have a very open relationship with all of our kids.  And he said it was almost like a sit-down moment and we didn’t get to sit down.  He just said I’m never going to have a job you know.  And we said, why?  You know we always encourage our kids.  We love education and we love our kids, and we said why.  He said it’s because I’m deaf and he just walked off and left the conversation there.  

Ryan:  Oh God.

Andrew:  Of course we came back to a it but like that’s earth shattering.

Ryan:  Yes, I mean what do you do with that?  What did you do with that Andrew?

Andrew:  Well you just come back to it.  So I’ve been working hard on this for a long, long time and it just taught me that basically the last year my efforts have been useless.  But it just says to me, Dad, get down, you got to do a whole lot more work.  It doesn’t matter what you’ve done in the past there’s a whole lot more to be done because Ryan he’s telling the truth and I know that.  

Like we had friends of mine helped me organize a conference a few years ago, and I gave an opening address there.  Some of my friends are brilliant.  They’re CODAs, they’re deaf, and they gave me great assistance.  And I just spoke about being a father, Helen and I do our best as his parents.  And everyone stood up and cried, waved their arms, and the deaf applause, and people just kept coming to me thanks, thanks.  I said you don’t owe me anything.  What I am doing is the job of my son’s father nothing else.  They said I wanted you as my dad.  I said I’m a failure, you don’t want me.  

But the pain that’s there, Ryan in our deaf community they’re living in an island, in a bubble, not wanted.  My son is so wanted inside the front door of my house but when he steps outside that front door this country that I love with my heart, my soul, my being doesn’t want my son.  And I ask myself every day I wake up.  It’s my first thought in the morning you’re a failure Geary.  What did you do today?  What are you going to do today?  Go to sleep at night it’s what did you do today?  There’s an island of 5,000 people there and they have nothing.  We might have given them an Act.  We gave them UNCRPD.  They’re still begging.

Ryan:  You went around the world looking for a solution when Calum was a baby.  Is that right?

Andrew:  Yeah.

Ryan:  You organized a conference for like-minded souls to talk this through.  Is that right?

Andrew:  Yeah.

Ryan:  No man is a failure who does that.

Andrew:  I can’t agree with you.  I have achieved nothing.  Absolute nothing.

Ryan:  Well, I think you’re being very hard on yourself.  I think you sound like a kind, compassionate human being who loves his son, and all his sons and his wife, with a passion and a dignity the like of which I don’t remember seeing for a long, long time.  And your uses of the words useless and failure strike me as being the words of somebody who is being really, really tough on themselves.  

You have a beautiful family, you’re a loving dad.  As one dad to another let me tell you I aspire to be as good as you are.  So honest to goodness.

Andrew:  I appreciate it.  Thanks.

Ryan:  I mean that.  That’s not that fatuous glib plamas.

Andrew:  I just have been given a gift, an absolute gift, and I don’t feel worthy of that gift Ryan.  I’ve been given a beautiful language, a beautiful community, and I don’t feel worthy.

Ryan:  How is your signing?

Andrew:  I’m good.  I can sign with any deaf person about every day stuff.  

Ryan:  Okay.  Was it hard to learn?

Andrew:  Yeah, I’m not gifted at languages.  Languages aren’t my gift, but I work hard.  That’s one gift God has given me is hard work.

Ryan:  You’ve served the country in your job.

Andrew:  Yeah, I love that.

Ryan:  Tell us what you do.

Andrew:  I’m a sergeant in An Garda Siochana and it’s absolutely…you can’t ask for a better, more rewarding, demanding role and I love my job.  I can go out there genuinely and apply myself with humility and hard work and try to bring some honor to that uniform.

Ryan:  Which you do.  You love this strange but beautiful country we live in.

Andrew:  I do.  And I think we live, our community we just…we go abroad and I’ve been given that privilege of representing my job abroad.  This country is just loved because we communicate, we listen.  The community workers in this country, the advocates, the charities, the volunteers, this country is built on their backbone and we are nothing without those people.  They just give their absolute heart, soul, being, every day without thanks.  And that’s what I love about this country.

We went for a cycle yesterday in Dolymount Park and just people saying hello, getting a rise up, saying hello, how are you, it’s a beautiful day.  You don’t get that elsewhere.  Like when I had that privilege of representing my job abroad they just love us.  And I love my country too but my country doesn’t love my son.

Ryan:  When do you see that where it’s the most large?  When do you see it most obviously when you think that the country doesn’t love Calum?

Andrew:  In education.

Ryan:  In education?  Okay.  So give me your main problem with the education of not just Calum but of friends like him.

Andrew:  I’ll tell you our story is simple.  We’ve twins.  Both boys are bright and we know that because we almost had to prove Calum’s intelligence and NEPS were brilliant to us and they gave us great support with that but like Donnacha can read.  He’s reading Lord of the Rings at the moment and he’s really enjoying that.  All of my kids, we have bookshelves everywhere and Calum is reading Roald Dahl but still he wants more.  And that’s thanks to…now I would not knock Calum’s school.  They’re brilliant people.  The system has let my child down because I need full access to fluent, flowing sign language the likes of Amanda Coogan that you have on the Late Toy Show at Christmas.  Someone that brings the language to life, that loves the language.

We have brilliant interpreters here in Cork and the school’s hands are tied behind their back.  I can’t expect the teachers to teach him.  You know they didn’t go to college learning sign language.  They’ve done the classes to absolutely immense credit to most of them.  They’ve done them on their own time and brought us to a high enough level that they can on their own time.

Ryan:  So they’re speaking almost if I may like pidgin sign language as we would…

Andrew:  That’s exactly it.

Ryan:  And they’re giving it a go like you might if you’re on holidays in France with your bit of leaving cert French. 

Andrew:  Yeah, that’s it.

Ryan:  And you admire their commitment to the task but then you see Amanda on the Toy Show and with the joy she brings to it, and the clear experience of it.

Andrew:  Yeah.

Ryan:  You want teachers to speak fluent.

Andrew:  I’m not even looking for that Ryan.  I just want an interpreter to stand next to the teacher.  I can’t expect that teacher to go to Trinity College Dublin for four years to become an interpreter.  But I just want…give me an interpreter that stands next to the teacher.  Calum’s had brilliant and I just mean brilliant teachers in St. Columbus, in Cork, brilliant people, brilliant professionals and that have given their heart and soul, but Calum needs more.  

He needs a bridge.  That bridge to his potential because there’s a fire in his eyes and I just need to set fire to that to open that with full flowing…it hurts him.  He sees the books his brothers can pick up.  He’s just as bright and he works very hard.  My wife works really hard, Helen.  We read, the whole family, we read together and we sit down together everyone picks up a book and he just wants…and he’s really hard on himself.

But I’ve been trying for six years.  We have our Sign Language Act review UNCRPD but they’re talking about creating this role forever and there’s all this lovely flowing words like reasonable access.  Calum has had whatever this reasonable access is for eight-and-a-half years and he’s years behind his twin brother and that’s despite…I work two jobs and my wife has stayed at home to make sure Calum’s education needs are met when he gets home.  And that’s what I’m talking about Ryan, like you need to have a degree in French to teach leaving cert French.  Anyone can walk into a deaf child’s class and sign with primary school sign language ability.  And that would nearly be described as reasonable access.  Now teachers try their best to go beyond that.

Ryan:  But if you keep at that, Calum’s reading Roald Dahl and Donnacha is reading Tolkien, and therein lies the disparity.

Andrew:  Yeah, and that’s huge work.

Ryan:  Who are Leah Katz Hernandez and Claudia Gordon?

Andrew:  They are two brilliant deaf American ladies.  Both used to work with President Obama in the white house when he was there.  His, as we can see was a real open administration and Leah was his basically one of the receptionists.  And Claudia Gordon was his social affairs advisor.  Both are sign language users and they came here in 2016.

Ryan:  Would they give you hope?

Andrew:  Oh definitely.

Ryan:  As role models?  You know when you’re having a bad day and you’re giving out about yourself despite being a particularly amazing person, and you’re worried for Calum as any father would be about his son or daughter, or mother you know just worrying about your children.  When you look at those people, do you think on a better day, say a brighter day, more optimistic day, do you think well you know he could end up in the White House or the equivalent of what that might be?

Andrew:  Yeah, if he’s given the bridge to his language he can achieve absolutely anything and that’s my belief that given the right support, give him an interpreter, and we had that for two years, and with that we can see where that bus what stop that will arrive at will be his potential.

Ryan:  Let me take some texts because there’s a lot of reaction to what you are saying, Andrew.  

Anne in Dublin says…Here’s some good news.  I’m a civil servant.  One of my colleagues is a young woman who is profoundly deaf since birth.  There are career opportunities for deaf people in the civil service and elsewhere.  

So people want to try to suggest that there’s more hope than you might realize.

Ken in Clondalkin says...Tell Andrew that there is no barrier his son can’t overcome.  I worked with three deaf tradesmen who were at the top of their game.  

My son, says another from Susan in Meath, has Down syndrome and hearing loss and very little speech.  We use ISL and like that father I know that my son getting a job is highly unlikely so I know that we ourselves will have to make a job for him in some shape or form.  I feel his pain.  We have the hard task of finding a secondary school that will meet our son’s needs this year. 

Any failures, says another, lies in society not in this man.  He is amazing and an inspiration.

Another said:  My son won’t ever have a job because he is deaf says Anna.  I work in a large organization.  One of our carpenters/maintenance crew is deaf from birth.  All of us communicate with written notes and the job gets done perfectly, he has a winning smile.  And this man has a job and is well into middle age.  

My son, says another from Theresa, is deaf and I’ve met professionals also completely deaf who have great jobs.  Terry Reid, Google him.  Howard Rosenblum, lawyer also deaf.  Calum can reach for the stars and nothing he cannot do.  

Another from Brid in Galway says I had to stop the car listening to your guest this morning.  He’s not a failure, he’s a dad, a loving dad.  And can you please tell that man in relation to him getting a job I’ve worked with a deaf girl for other thirty years.  She is fantastic and is definitely very integrated into the team.  

And one more for now:  This man is articulating so well the experience of parenting a child with special needs.  I have a teenage autistic daughter.

And in they come…you know people are just very much…your story is resonating with a lot of people.  

Today as we speak, what are we on?  Ten to ten.  Is Calum in school now?

Andrew:  Yep, yeah, he’s gone off this morning happy, happy out, looking forward to it.  He has lots of friends in school and one more year left in St. Columbus.  I know a lot of those people that you’re talking about Ryan and like, I do, I make it my business to go out and meet.  And there is deaf successes out there but your team know the research.  They’re ten times less likely to go to third level.  Four times less likely to have a job.  Three times more likely to suffer some sort of abuse during their life.  And 80% of deaf people leave school with the average reading ability of an eight to nine year old child.  

And I know we’ll beat some of those numbers but it’s just that you have to add shoulders to the wheel every minute of every day and that’s the same for parents all across this country who have children with different special needs, disabilities, be that whatever it’s defined as.  And we all know we’ve two jobs.  One is to try to get our beautiful democracy on the age of Europe to recognize our children as true and full citizens.  And I won’t rest until my son is accepted as a full citizen of this state.  I give my day every day as an ambassador for our democracy and that’s my life goal.  And I just don’t want to open the door for my child.  The 70, 80, maybe 100 children like Calum who are primary first sign language users on this island and I want to open the door for everyone.  

It’s useless if I only open the door for him.  Every one of those children has to come through the door together.

Ryan:  That was the idea of the Proclamation, wasn’t it?

Andrew:  Yeah, and again that’s what we asked our country to do is cherish them all equally and those were beautiful people who wrote brilliantly you know a long time ago and we’re still chasing those dreams.

Ryan:  The fight goes on.  Andrew, thank you for your time this morning.

Andrew:  Thank you.

Ryan:  I appreciate it.  You articulated your story so beautifully this morning and it’s good to talk to you.  My best to Helen and the boys, all of the boys, in your living room tonight or your kitchen table.  I wish you all well and I hope we talk again.  And maybe the fight yields some good results so please keep us posted won’t you?

Andrew:  I deeply appreciate your team’s time and please pass on my thanks to all of your team Ryan and yourself especially.  Thank you.

Ryan:  I will of course.  Mind yourself Andrew, nice to talk to you today.  Take care.  All the best.

Eight minutes to ten, that was Andrew Geary joining us live on the program this morning.  

A text says:  I’m a Cork pediatric audiologists with the HSE diagnosing hearing loss in newborn babies all day every day.  It’s an incredibly difficult thing for parents but with the advent of newborn hearing screening the advanced technology of hearing aids and cochlear implants children are really doing exceptionally well.  It’s a process but children are doing well compared to ten years ago.  

It’s amazing to hear this account from Calum’s dad.  I met Calum as a baby and so often only get a sense of children under four years old.  It goes to show this process is ongoing navigating the waters of parenting a deaf child through adolescence and adulthood.  He’s doing an amazing job and incidentally we are celebrating ten years of the arrival of newborn hearing screening programs in the HSE this very week.  

How about that?  And also news overnight about the million vaccines in the country as it happened so a few landmarks being made.  But I thought Andrew spoke so beautifully about his sons, his wife, and the struggle that continues.