Deaf and in Care. Insights, experiences and advice

Claudia Roehlen

Claudia Roehlen

BREAKTHROUGH - WELLBEING & CAREER DEVELOPMENT MANAGER

In the UK alone, there are over 10 million people living with some form of hearing loss. Deafness is multifaceted and different for each individual and it can range from mild forms of hearing loss to very profound deafness. Deaf Awareness Week (DAW) 2021 is about promoting the positive and challenging aspects of living with deafness

Deafness is something that is not talked about a lot, especially not in the context of the care system; the support available in residential homes or foster familiesTo learn more about the issue and how it impacts on care-experienced young people’s lives, we took the opportunity to speak to Finn, a care-experienced young person from London.  

Finn and I have been working together on Drive Forward Foundation’s Breakthrough Programme, an initiative aimed at young people in care with the aim of enabling them to progress personally and professionally as they prepare for adulthood. 

Before I met Finn, I didn’t know much about deafness or about DAW. I didn’t know about Cochlear Implants; British Sign Language and I didn’t know much about the difficulties and advantages of having hearing loss. I’m very grateful that Finn agreed to talk to us about her experience and their insights and advice. 

Over to Finn. 

Finn: Hi, my name is Finn, I am 16 years old, my pronouns are they/them and I am Deaf. I have cochlear implants on both sides.

My journey started pretty much when I was born. Doctors figured out that I had CMV, which is short for Cytomegalovirus. It’s quite a common virus that is related to the herpes virus that causes cold sores and chickenpox and a lot of people don’t even realise they have it. Either because they just don’t display any symptoms or the ones, they do display are similar to those of a common cold. It’s mostly harmless but there is more of a risk of something happening with newborns and younger children or people with weakened immune systems. 

When you found out that you had this virus, was that at an age where you had already learned how to speak?

Finn: No, my case of CMV is congenital. That means while my mom was pregnant with me, she caught the virus and then that got carried to me in the womb. 

And how did you learn how to speak while you were already struggling to hear?

Finn: Well, my hearing loss was gradual and it only started getting worse when I turned four. And that was when doctors and people in my family said, “We need to think about hearing aids now because they are not going to be able to hear what’s going on around them.” At that point everyone around me already spoke and was hearing, so they decided to continue speaking to me as usual and taught me a few signs here and there. I suppose that because of the environment I was in, people thought I wouldn’t use BSL that much. So, I have always spoken and English is my first language. I do use BSL daily though, and I’m taking a BSL course right now.

One of my favourite things about BSL is that just like with any spoken language it varies between regions.

Can you explain to our listeners what BSL stands for? 

Finn: BSL is British Sign Language and it is a really great language. One of my favourite things about BSL is that just like with any spoken language it varies between regions. Like, you could sign with someone from even just a different part of London and they could use different signs. So I could have a conversation with someone and they would sign something I wasn’t familiar with so we’d pause to learn those signs that we weren’t familiar with. You’re always learning as you go.

One of the hardest things about being deaf is that you have to constantly adapt to the environment you are in, because there are so many things you have to consider.

I love that you said “you always learn as you go”. And I imagine for you there were many situations in your life where you really had to learn and also to adapt to your surroundings. I am wondering what are the most challenging parts in your day-to-day life and what are the parts that you enjoy most?

Finn:  Uhh, there are a lot of things I could say here. One of the hardest things about being deaf is that you have to constantly adapt to the environment you are in, because there are so many things you have to consider. There’re things like, can I lipread this person? Who is the person that I am trying to lipread? Do they have a beard? Do I understand their accent? Is there more than one person? It can get very exhausting, because there are so many things that I have to consider that hearing people just can do so effortlessly.    

That is so interesting to know. And I only realised recently, when we met for the first time, we were already in the midst of this pandemic and everyone was wearing masks. That must be so difficult.  

Finn: Yeah, definitely. It’s been a nightmare with the masks. Obviously, they’re very important. But regarding communication it makes it a lot harder. What I do recommend to hearing people when helping others who experience hearing loss is to learn a few basic signs or at least the alphabet of their native sign language. That can make all the difference. Another thing that you can do as well is type what you are saying and show them on your screen. Even in a world without masks, those things are really helpful.  

There are so many different ways of how one can experience hearing loss. There is no one way and everyone is different. 

I can see you are really creative in coming up with ways to communicate. It is so nice and refreshing to hear all about that from you. Once we become more aware of other people around us and have it in the back of our head that they might have hearing loss, we (hearing people) can react and adapt better. What do you think is the best thing about hearing loss? What are you grateful for?  

Finn: There are definitely a lot of things that I enjoy about being deaf as well. One of the things that I always joke about is, if there’s someone that annoys me or I just don’t want to hear them, I simply take my processors off. Of course, it depends on the type of hearing device they use because some people can still hear to a degree and devices just amplify those sounds. But for me personally, with the implants it’s really easy. Especially when I’m tired and want to sleep, I just take them off and there’s nothing there. I can just relax in peace! But the deaf community however … that is something that also I really love. There are so many different ways of how one can experience hearing loss. There is no one way to do it and everyone is different. I find that really cool, and it is nice to have conversations with someone who can relate to what you are going through.

Thank you for sharing that and it is so good to hear about the positives as well. So, forgive me that I get back to some more challenges now. Last week we spoke with each other and you mentioned that sometimes people applaud you for the most normal things. Can you tell us more about that?  

Finn: I was saying in that talk last week that a lot of representation that deaf people get in mainstream media isn’t really representative and it is more focused on ‘inspiration’. Hearing people say, “Well, if they can do this, this and this despite being deaf […] ” – that’s the word I hate, ‘despite’ – “Then what’s stopping us from living?” And it is really frustrating for a few reasons. One being that it feels like they are using you and also that for a lot of deaf people this is just their normal life. That is all they’ve ever known and the things they are doing are normal to them so it feels sort of patronising to be applauded for doing such trivial things. I mean, of course it is nice to be acknowledged, e.g. if someone is going through a rough time trying to adjust to their surroundings. But there is a line there that a lot of hearing people don’t realise they can cross when using deaf people as ‘inspiration’. 

…the word “suffering” really isn’t appropriate. We are just living our lives and we are not miserable all the time.

Absolutely. It is a form of positive discrimination and I really like that you highlighted the word “despite”.  

Finn: A lot of deaf people live a perfectly fine life. There is really no need to say “despite”  

I also learnt from you for example, that people don’t appreciate the term “hearing impaired”. Is that right?  

Finn:

Yeah, a lot of people don’t like the term because it implies that there is something wrong with being deaf. Yes, we do have hearing loss, but that doesn’t define us. Having the word ‘impaired’ there just implies that there is something wrong. People prefer to say “I have hearing loss”, because that is just what it is.  

Also, saying that they are “suffering from hearing loss” isn’t good either. Yes, it is really difficult at times, but the word “suffering” really isn’t appropriate. We’re just living our lives and we are not miserable all the time.

   

What would you recommend someone your age who also experiences hearing loss?  

Finn: Well, I think definitely to find a community of people you can relate to. I am a bit of a hypocrite here to be honest, I don’t have a big community myself since I never go out much but it’s definitely important. It’s easy to feel isolated if you don’t at least have some people that understand you. Having that community there can make you feel more confident in your hearing loss and you can learn how to manage it more. And it is just such a good thing to have. For me, in every school that I have been to there was some sort of Deaf Support Department. That’s pretty much the only group of people who also have hearing loss that I have been consistently in touch with. And even that made such a big difference.

But it is okay to be curious as long as you are being respectful and you just want to know how you can help. Most people will be happy that you express interest in deaf culture and making your world more accessible for them. 

That is a great tip. And what about hearing people? Any tips for them?  

Finn: Yes! Ask your friend with hearing loss about what they prefer you to do in certain situations. For example, how to get their attention. Some like to be tapped on the shoulder, others may want you to wave. Just ask. I know a lot of hearing people worry about addressing that because they think it’s rude. But it is not rude at all to just ask. 

I can totally see how hearing people and also, I would worry about making the other person upset. And then we end up ignoring it. And that actually is really rude.  

Finn: This is why I am so passionate about this when I talk about Deaf Awareness with hearing people. I feel like when it comes to asking questions people get very nervous because they worry about offending who they’re talking to. But it is okay to be curious as long as you’re being respectful and you just want to know how you can help. A lot of people will be happy that you’re expressing interest in Deaf culture and making your world more accessible to them.

It would be great if every person with hearing loss could have access to a community. 

We spoke about video of babies with cochlear implants and it is the first time of them hearing their parents. And these are very moving and people videos. But you mentioned that no one ever sees what happens after.  

Finn: Yes, of course. Cochlear implants are great! I have them myself, so I speak from experience. But I feel like when it comes to cochlear implants, hearing people see them as a cure and think, “Ah, we don’t have to worry about doing anything with this child in relation to their deafness!” But really, with implants, it is a whole process. It’s not just about having the surgery and that’s it. There are parts in your head that have been completely changed and replaced with all sorts of things, so of course it takes time for your body to adjust to that. It takes months and years to get used to understanding people properly with less effort. For example, I have had my cochlear implants since I was in Year Five and I’m only just starting to be able to understand some people on the phone. It’s been a long time and I’m not there yet. I mean, of course they work differently for different people. But it is so much more than just getting this surgery and getting it over with. That is something that I really want to bring across to young people. Especially parents of cochlear implant users. Please, if you can, expose your child to Deaf culture. That is really important to me. My family didn’t do that. The only access I’ve really had to Deaf culture is through the Deaf Support Departments at my schools. And at the end of the day, your child takes off their processors and they’re still going to be deaf.   

 

This interview was recorded online on the 22nd of April 2021. With the help of live captions and video (for lip reading) Finn was able to share their experiences. 

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