People who are deafblind and family members who are part of The Anne Sullivan Foundation Advocacy Working Groups share their experiences of deafblindness. Text transcriptions are below each video.
James describes how he became deafblind video transcript:
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Interviewer – James the first question I wanted to ask you was what is deaf blindness? How would you describe deaf blindness?
James – So I was born deaf and my sight was good. It was good. I went to school in Bishop’s town. I went there and I was playing fine and swimming and involved with sports and everything was fine. Then I moved to St Joseph’s when I was about 10. I was playing sports normally and that was fine, playing football and I could see well and I could write and there were no problems, and I could communicate with the teachers and everything was fine. Then when I was about 18 my sight started to diminish and people would have to tap me and I’d have turn to look at them. I didn’t realize that I couldn’t see as well as I had. Nobody ever told me – my parents never told me that I was blind. I knew that I was deaf, but then when I was about 17, I was thinking myself that I was blind. Around 17 or 18 that was. So that’s how I knew about deaf blindness then.
Interviewer – How would you describe living since 17 with both hearing and sight difficulties?
James – Yes. When I was 18, once I left school then I was looking for a job and looking for training and certificates. I was working at home and I was afraid to go out at night in Dublin. Later when I was about 30 my sight got worse and it really diminished. So, I was around 30 when I had a checkup and they had noticed that I wasn’t able to see properly. There were different factories that had closed down at that stage so it was difficult to go for interviews then. You know I had good experience with writing, but I was afraid of getting injured as well in different situations. You know it was very very difficult to go for an interview for jobs or anything like that.
Interviewer – Would you prefer to work?
James – Yes. I would like to work because it’s boring at home and I’m sitting there doing nothing so I would prefer to work yes.
Interviewer – If there was recognition of deafblindness, what difference does that make to your life? You know, like if you had Personal Assistant hours for example.
James – So now I’m waiting for the Personal Assistant hours. I need help really. I do need help because I’m always by myself. I’m very independent. I like to go off by myself and I like to do things myself so it would make a difference for that.
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Carol explains why deaf blindness needs to be recognised video transcript:
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Interviewer – What would make a difference in your life? What supports would you need to make your life easier Carol?
Carol – I think first and foremost, the recognition of deaf blindness is what will be the foundation of what will help me achieve what I need to fully participate in society. First and foremost, in terms of my healthcare, a dedicated care pathway would be useful, because right now I coordinate my [my] own care in terms of ophthalmology and audiology. But I don’t have a multidisciplinary care team because my sight is deteriorating and my hearing is deteriorating. There’s no one care practitioner that is coordinating my hearing or my vision needs. Nobody is deciding when I should get my cochlear implants based on the visual loss or my hearing loss. So, I’m lost in the system, and this is why recognition of deaf blindness is essential to me. You know, our country was very progressive economically. Why haven’t we progressed on this, on deaf blindness being recognised as a unique disability? We have a lot of work to do in terms of creating a safe accessible environment for people with disabilities to live independently. We have a lot to do.
It’s not like we have to reinvent the wheel, there are so many wonderful countries out there that have wonderful accessible environment for people with disabilities, particularly deaf blindness. A typical example where it’s really really challenging is when I’m going to a medical appointment. I arrive at the building which you can only access by pressing a doorbell. Then you’re trying to hear the door click when the door is being released or you’re trying to hear the person speaking through the little bell and that’s very very challenging, particularly when it’s on a heavy traffic street. Then you get inside the door, there’s nobody to meet and greet you. So, you’re trying to find your way to a waiting room. Then you give your name and you’re sitting in a waiting room and you’re just so tense because you’re waiting to hear your name, or see a person that you can lip-read that’s calling your name, and you’re just hoping and praying that you will actually know when you’re being called for your appointment. That’s a stress that’s really unnecessary and can simply be alleviated by having a sticker on your health file saying that this person is deaf blind. This person has communication needs. That’s a simple remedy, but we have said this many times to the different hospitals, to different medical practitioners and sadly it’s still not there.
In May 2015, I spoke before the Joint Oireachtas Committee for Health and Children presenting the argument for recognising deaf blindness as a unique disability. The committee unanimously supported our plea for deaf blindness to be recognised and sadly, to this day in 2019, we’re no further on. I think there’s an incredible urgency now to get recognition because we’ve no special care pathways in the Department of Health. We have challenges within education and employment. Our day-to-day living is affected because for those who have medical cards there’s no entitlement to a higher specification of hearing aids that we need to get around safely in our environment. We need to put deaf blindness on the top of the agenda.
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A mother’s story video transcript:
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Interviewer – Mary you’re in to talk about deafblindness. Now you are not deafblind yourself, but your son is. Can you tell us a little bit about what deafblindness means? Like, what it’s like living with deafblindness?
Mary – Yes, as well as a parent of somebody who is going through deafblindness, I suppose from our point of view I can explain Donal’s case is that he was born visually impaired which we realised when he was about two and a half. He had glasses to rectify it but we could see that things weren’t improving. So, he ended up going to Crumlin for some tests and he was diagnosed with Alstrom syndrome. What this means is that Donal’s vision or his loss of vision is progressive so he lost his sight at the age of 10. Then at around the age of 12 he was diagnosed with a hearing impairment. He had perfect hearing up to then.
Yes, I suppose I can see the issues especially around education with Donal. It was hard for people I suppose, his teachers, friends, people to understand I suppose what he was going through and that’s the big thing that I would love that the general public would know what is involved for a person who’s actually deafblind. Most people don’t realize that if one of your senses is gone, it can be very tiring. For example, Donal went blind early so when he was in school, he had to listen intently so he would get tired very easily because he had to depend on his hearing and it’s vice versa I’d imagine, but now that he’s actually blind and has a hearing impairment, he has to work I’d imagine four times harder than everybody else. Everything that he does in relation to braille and everything is much slower and more difficult.
He is going to college. It’s tough but he is getting through it. But I would say that I would love that somebody would be in college that would have expertise in deafblindness.
Interviewer – If there was recognition of deafblindness do you think that the college would understand more?
Mary – Yes. I think that if there was more recognition, the college would understand, people in general would understand, and services would be available. There is a lot of ignorance out there but there isn’t any malice in the ignorance. It’s just the people genuinely don’t understand what may be involved for a person who’s either blind or deaf or who’s both as in this case.
Interviewer – Just one last question. As a family member, as a mother, what challenges are there for you? How does it impact on your life as well?
Mary – I suppose we find with Donal it can be very emotional because he can be very isolated. As a parent I worry about the loneliness of it in the future. You know, will people understand? Will he have a circle of friends that he will be able to call on? So yes. That is a worry. And I would worry about his future as regards employment. At the moment he would like to do a masters and I think he was talking that he might have to go to Dublin or possible Scotland. So I would worry will the services be there so that he could be independent and be able to carry on.
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Susan describes deafblindness and how she copes using a cane and a guide dog video transcript:
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Interviewer – What does deafblindness mean to you?
Susan – Deafblindness means that I can’t see properly and I can’t hear properly. But I wear two hearing aids to help me hear better. My eyesight is a bit blurred. It’s like looking through the keyhole. Very foggy and misty. I can only see shadows and shapes. The trees, you, I wouldn’t see the colour. It looks like I’m looking at a black and white television all the time.
Interviewer – Have you always been deafblind?
Susan – Well, no. When I was a kid, I was a bit deaf. I went to Cabra school for the deaf, but I wasn’t that bad. I was able to talk and learn how to speak properly. I went to Cabra School St. Mary’s for the deaf. Then I went to secondary school but I went to hearing school because I wasn’t too bad and my mother thought I could carry on with the hearing people. So I did. But since I was in my late 20s – I was driving I was working in the CMI service. I was cycling. I did a lot of sports and everything was fine. Then I noticed one night I was driving and I couldn’t see properly and I thought I need glasses. Then when I went to the optician, they game me glasses.
But later on, I was getting worse and I went back and they knew that there was something wrong. They sent me to the Eye and Ear Hospital to a specialist and I discovered had RP.
Interviewer – What’s RP Susan?
Susan – Retinitis pigmentosa. It’s like a disease at the back of the eye but it’s dark. It’s like a tunnel vision getting narrower and narrower. It’s blurry and gradually gets worse. Some people go completely blind, but luckily, I had it for over 20 years and I was prepared for it. But it got worse gradually and I started using the cane and now I have a guide dog because the guide dog gives me more confidence for walking fast. On my own I’m a bit nervous with the cane, but I feel more confident walking quickly and get more exercise with the dog.
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Gavin describes the challenges of living with deafblindness in rural Ireland video transcript:
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Interviewer – The Anne Sullivan Foundation are running a big campaign at the monument on their 30th anniversary. They’re looking for recognition of deafblindness as a unique disability. Can you just tell me Gavin what is deafblindness?
Gavin – Deafblindness is where a person has a dual problem with the two senses, the sight and the hearing. It’s basically social isolation in the sense that how could you go into a pub, have drinks with friends when one, you can’t see them and two you can’t hear them. You go to a shopping centre say – Once again you can’t see what’s happening, and you can’t hear what’s happening. Education. How can you get a good education when you have problems seeing the blackboard but you also can’t hear what the teacher is saying. Transport may be an issue. When you’re sitting on the bus you can’t hear the announcement and you can’t see where the bus is going. How do you know where to get on and off?
Interviewer – And how have dealt with this Gavin over your lifetime? Or what difficulties have you dealt with?
Gavin – Right. Education. I got the leaving Cert. I struggled through college. I think the likes of a Personal Assistant or a personal reader should be given to someone that’s blind and deaf. I think that transport, I live in rural Ireland in North Kilkenny, so I get a bus say into Kilkenny. I have to get to a nearby village but the bus either leaves at eight o’clock in the morning or two o’clock in the afternoon. Coming home, the bus either leaves at half twelve or half five. So therefore, transport is an immediate issue. I do use the local Ring A Link bus but that only goes once a week and also, you’ve only got about two and a half hours in Kilkenny then.
Interviewer – What would be the difference though, let’s say if I had a different disability? I’m still relying on that transport system. Like what’s the particular difference for you as somebody who’s dealing with or living with deafblindness? It there a particular issue there?
Gavin – Right. Sight loss – I can’t get into the car and drive somewhere. Hearing – I can’t partake in the conversation on the bus due to the noise of the engine. The background noises. So, I just sit on the bus. If I could get into it. It’s very hard going into a café for your lunch say. One you can’t see the menu and two you might struggle to hear what the person who is helping you is saying. If you go somewhere and the information is signed (Irish Sign language) how can you see the sign when you’re blind?
Interviewer – But recognition would make a big difference as a start?
Gavin – Straightaway yes. Better supports, better service a different approach. Coming at it from a completely different angle.
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Dolores describes deafblindness and how her cochlear implant has helped her video transcript:
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Interviewer – What does deafblindness mean to you?
Dolores – I mean I have a dual-sensory impairment. I’m very short sighted. I’ve been deafblind since I was a baby. Everything has to be very close. I can only hear on a one-to-one basis. Even though I got a cochlear implant which was great.
Interviewer – So do you use a cochlear implant but you can talk one-to one with that?
Dolores – Yes, I do. Without the cochlear implant I’m totally deaf. So sometimes I can have my peace and quiet.
Interviewer – What age were you when you got your cochlear implant Dolores?
Dolores – I was 35.
Interviewer – And it made a big difference to your life?
Dolores – It did yes.
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