Glenn Faeroy: The challenges of being deaf with rare illnesses

Hi, my name is Glenn Faeroy, I’m originally from Norway and have been in the UK since I was 3.

I’m writing this blog to educate others about the day to day challenges of someone who is both deaf and has rare illnesses.

I’d like to explain how I cope and navigate through the complexities of the health services. I’d also like to explain what it’s like to live with permanent health conditions which few people have even heard of.

I must say I am a very positive person and I live my life to the max because I never know which day will be my last. I approach life positively and with gratitude like I always have done.

My health conditions are several and most are the result of cancer treatment which I have had for many years and is incurable. They include fibromyalgia, akinetopsia, peripheral neuropathy, Polymyalgia rheumatica, bone degeneration disease and diabetes inspidus.

I have a blood cancer of the immune system which is progressive with no cure and no effective treatment. With each treatment I have the cancer adapts an comes back stronger than before.

Colds, flu and COVID are serious problems for me. Whilst not everything will make me ill, If I do get something it’s fast and can have dangerous consequences. I have had COVID 8 times now and have been hospitalised 3 times now. Sometimes I have been seriously ill but had no interpreter and I have just had to do my best to get through it while wondering if I was going to make it through the day.

This is the reality of the situation for lots of deaf and hard of hearing people where you cannot get hold of any communication. And if you don’t have families who can communicate, you are really in a situation where you’re in a dangerous situation where your life could depend on this.

I’ve been in and out of hospital since I was eight and a half years old. My journey has been a long one as I am now 50 years old. My journey in the health service has not been a positive one unfortunately. A lot of the time I’ve been spoken down to and condescended as if I’m an idiot because I can’t tell what they’re saying or understand what they’re saying.

So it has not been an enjoyable journey and this is why I would like to see changes take place now with the BSL act. I really want to see hospitals and doctors taking their roles seriously and actually helping deaf people and hard of hearing people and anyone else who needs communication at all to have that in law and have access to it when you need it.

I’ve always been deaf. I was also born with processing problems. I’ve always found it hard to understand what people say and how they say things. I don’t always understand English very well so it is very difficult. Having tinnitus does not help either because that interferes with all the noise and the volume is distracting.

Defining my deafness is not an easy subject. Audiologists class my deafness as moderate to severe and it’s a progressive deafness which is connected to my immune diseases. The greater the cell load in the body the more the damage that happens to it. This is why I try to avoid infections so I don’t have more damage taking place.

When I was young, I had micro tumours in my audio nerves which affected the way my hearing works. They were able to use treatment to stop this progressing and I do have hearing aids but I don’t use them. My thought is that “am I wearing hearing aids to benefit the hearing society that I live in?” or “am I wearing a hearing aids to help myself?” And again, how much help will they actually do? Because all they do is make noise louder and not always clearer.

But I’m coming to the point now where I’m going to have to use them whether I want to or not especially if I am without an interpreter in hospital and not sure what is going on.

So, as I say my deafness is progressive and it is continuing to deteriorate. Culturally and identity-wise I am proudly deaf. I’ve been in a deaf community since I was 9 so I have spent most of my life in the deaf community. It really does feel like my own community and it is part of my identity. When I was young I learnt how to sign and although I am able to speak and be understood (when I have to) I would say BSL is my main language.

My first encounter with a deaf person was memorably when I was around 7 years old. I got sent to a boarding school because I couldn’t understand what was being said to me. I got bullied at a mainstream school quite badly so it was decided I would go to this boarding school and I got to meet deaf children for the first time.

What amazed me at the time was they used to have a special induction loop but in those days they were massive –  now they’re tiny! Having other deaf children at my school encouraged me to take up sign language and that’s what I did, and I thrived.

In fact I would say some of my best memories and happiest memories growing up come from my time in the deaf clubs. We played things like chess, monopoly, draughts, Scrabble, had competitions and played darts.

We would always have a laugh and be outside chatting under the lamp post when the time came to close. It really was some of the best times in my life and I I felt so utterly terrible and quite hopeless at the time when the deaf clubs I went to all got closed down.

I still miss the deaf clubs to this day because we still don’t have a local one here anymore. Instead, I have to go to places like Birmingham, Kings Heath, Worcester or anywhere else in the country really where there are social meet ups or deaf events.

Finding my deaf community and embracing BSL has been so helpful for me. I am also dyslexic with ADHD and Asperger’s syndrome so with my processing struggles and deafness, I do find English complex at times. BSL gives me a voice and makes me feel at home with my community. Having BSL access with interpreters makes my medical experience also so much better and takes a weight off my shoulder.

I really feel that all doctors or professionals in a medical capacity should have training in sign language or have constant, quick access to interpreters or communicators at the hospital. Even having some basic knowledge of sign language would go a long way.

Obviously video services would be helpful as well as technologies where someone could speak into that technology and then it can be translated into sign language. They can do it for spoken languages. Why can’t they use that to translate words into actual visual cues?

I think the understanding of the doctors would be better spent if they had some comprehension about what it’s like to be a deaf or hard of hearing person. Also, if a patient has autism they need to remember this is also a barrier to communication.

My advice to other deaf people who have several hospital or medical appointments coming up (like I do – very often) is to be prepared! Make sure you have any questions prepared before you go. Write them down or record them. If you can record the actual conversation with the professional then do so with their permission obviously.

Whatever you have discussed at your appointment, get them to send the details to you so you know what’s going to happen next and what you’re going to be dealing with so you’re not suddenly surprised or shocked by a procedure that you’re going to have.

Always have your phone with you if you need to use it as a way of communicating – useful if you find yourself without an interpreter. If you do have someone who can act as an interpreter at last minute then take them along with you if you can just in case, they can also be someone else to absorb information for you.

If you know the clinic you are attending, you could remind them before you go that you need an interpreter for all of your appointments and you can feedback if you want a particular interpreter too. All the little things add up to big things and make it much easier to go to an appointment where you can actually get what you need from that appointment.

My ambitions are several, I still have many ambitions regardless of my medical outlook! I have ambitions to make society more accessible to deaf people whether its in hospitals or at the theatre.  I’d love us to get to the point where deaf people don’t have to keep asking and fighting all the time just to get basic access to everyday services. Whichever way I am needed to support the deaf community, I’ve always been there and always will be and will continue to fight until things improve for us

On another note, I am a BSL performer as I love music and I love BSL. I am currently involved in the Commonwealth Games opening and closing ceremonies as a BSL performer and I am part of Unify the all-deaf sign performance group. I still have many dreams about performing! I would love to go to Glastonbury or even the Eurovision Song Contest. The possibilities really are endless.

I wanted to share my story to inspire others to live each day focusing on what matters most to us, and to remember that we are all in this together. I am so thankful to the deaf community for being such a positive part of my life. Thank you for reading my story.

Glenn Faeroy is passionate about campaigning for access for the deaf community, his other hobbies include sports, theatre and gardening.