Since there’s a very good chance you have no idea who I am, let me introduce myself – My name’s Asia. I’m a 25-year-old graphic designer from the lovely county of South Yorkshire. I have two older brothers, 11 tattoos, and a cat called Harvey. I also happen to have a condition called Usher syndrome (but you probably figured that part out already).

When I was born in the summer of 1998, newborn hearing checks weren’t a thing. It wasn’t until my 7-month check that doctors noticed something was awry with my hearing. I failed my follow-up auditory brainstem response test, leading to the diagnosis of severe bilateral sensorineural hearing loss. I was given two hearing aids at 11 months old and pretty much sent on my merry way to get on with my life as the only deaf person in my family.

From then on, things were relatively straightforward with my health – routine hospital appointments, hearing tests, new ear moulds, rinse and repeat. I attended a mainstream primary and secondary school and found coping strategies and adaptations that worked for me. In school, I would carry a small card with my needs on (please face me when you’re talking to me, sit me close to the front, and for crying out loud don’t shout while you’re wearing my radio aid). I had a tight-knit group of friends who knew what I needed and how to help and support me. My family were extremely supportive and encouraging of me throughout my entire childhood and adolescence – never once was I made to feel that I was less of a person than anyone else because of my hearing loss, or that I was any less capable of achieving whatever I wanted to achieve. I used to love the fact that I could customise my ear moulds with different stickers, or have different coloured hearing aids. Don’t get me wrong, it was by no means easy, but it was a level of stability that I’d adapted to and accepted as a part of my life, a huge factor of the very foundation of who “Asia” was.

Then one weekend, when I was 19, I thought I’d got some dust in my eyes as I started to notice a bit of shadowing – almost like a cobweb – in the centre of my vision in my right eye. After leaving it for a few days, I was sent to A&E by my doctor to get it checked out. I was eventually dismissed by an A&E doctor and told that I had posterior vitreous detachment (PVD), which apparently was nothing to worry about and I should only be concerned if the floaters seemed to get worse suddenly.

Which, of course, they did.

Asia receiving testing

I won’t lie – the testing process was grim. I’d never had to have eye drops before, but suddenly I was having ten sets of various eye drops within the space of a week and a half. I’m claustrophobic, but I had to put my head in a little box and stare at a bunch of flashing lights whilst having electrodes literally touching my eyeballs so the doctor could measure my brain activity (an electroretinogram and visual field test). I felt like some kind of lab rat being poked and prodded and honestly, it sucked.

After countless trips back and forth to various hospitals to see various ophthalmologists, I was eventually diagnosed with Usher syndrome Type 2. I remember being sat in the consultation room with my mum and my oldest brother and my heart just broke. I was told I’d never be able to drive because the minimum peripheral vision requirement was 120°. I had 10° of peripheral vision left, and I hadn’t even realised I was losing it.

Asia's moulds

I was 19 years old and forced to grow up so much faster than everybody else around me. For my whole life, I’d chased a career in graphic design and now I was being handed a visual impairment certificate  It felt like my dream career was over before it had even started. I thought I’d learned how to deal with my deafness but this? This was completely unfamiliar territory for me. It left me questioning everything I thought I had figured out, my deafness included. I was starting to notice that I was now an adult, sitting in hearing clinics where I was the youngest person by a country mile, being seen by audiologists who didn’t seem to know how to deal with me with the same compassion I’d experienced in the children’s clinics.

However, as difficult and life-changing as the diagnosis was, it also came with a strange sense of relief and clarity; I wasn’t just clumsy, I literally couldn’t see the things I was bumping into because they were outside my field of vision. I wasn’t just a bit of a wuss for being scared of the dark; believe me when I say that being unable to see or hear in the dark can be pretty scary. So many things suddenly made sense.

At some point after my diagnosis, I completely changed my mindset. I truly wish I could remember the exact moment but all I recall is a newfound appreciation for my life, the experiences I was having and, above all, the people around me. My family and friends were so incredibly loving and supportive. I don’t think I’d be the person I am today if I didn’t have the amazing support network that I have around me.

The support and help I have from those who love me mean that I still love going to gigs, on days or nights out, or to the cinema. I go on holidays to places I’ve never been because I know that not only do I have someone there to support me along the way, but I’m confident enough in myself to ask for help if something isn’t accessible enough for me.

That support network only grew as I delved more into the world of social media. I’d never really been part of a deaf community growing up, so when I tweeted about a deaf ASOS model that I’d noticed, I definitely didn’t expect the overwhelming reaction it received. People were messaging me to thank me for bringing it to their attention and for increasing public awareness. People were coming to me with self-esteem and confidence issues around their disabilities and asking for advice.

Now, I definitely wouldn’t call myself an expert by any stretch of the imagination but just knowing that I potentially helped even one or two people within their own lives as disabled individuals? It’s truly humbling. There are so many amazing little communities on Facebook, Instagram, Twitter – whatever your social platform of choice is. You might have the most supportive family and friends in the world but sometimes you need people who know how it feels to be in your position. While we’re all different, even if we have an identical diagnosis, there are countless people who just… get it.

I’m now an auntie to six nieces and nephews, the youngest of whom also wears hearing aids. I want him to grow up feeling supported and completely unstoppable, regardless of his hearing.

My advice to other people with Usher syndrome, as a self-confessed non-expert?

  1. Stand your ground. A doctor can tell you technical stuff from a medical perspective but ultimately? They’ve read about it. You’re living it. I was wearing my junior hearing aids right up until last year because I hated the sound of the adult hearing aids my local audiology department told me I had to have. In the end, I chose to go private for my hearing aids because I refused to just ‘make do’ with a sound that I wasn’t happy with.
  2. Surround yourself with supportive people. You are never alone. I can’t promise that you won’t encounter people who don’t understand or are perhaps just downright ignorant, but for every ignorant individual, countless others will want to support and empower you. Even if your immediate circle of family and friends don’t understand or don’t know how to help, services like Usher Kids UK can point you in the right direction. I met other people with Usher syndrome for the first time last year at an Usher Kids UK event, and I can’t even tell you how it felt to meet other people who understood how I felt, to share stories of our similar experiences, and even to find out the things that made us all different.
  3. Be honest. Be honest with your doctors if you feel like something isn’t right, or if you don’t understand all the technical jargon that’s being hurled your way. Be honest with your friends or family if you’re just too drained to do that thing you were supposed to do. Be honest with yourself and those around you if you need a bit of help and support.
  4. If you need something, ask. Don’t feel bad about asking for something to be made more accessible for you. You’re entitled to the same experience and level of service as anybody else!
  5. Be proud. There’s only one of you in the world, and that makes you more special than you’ll ever know. A quote that I love is ‘You are not a burden, you’re not a waste of space, there’s only one of you and nobody can ever take your place.’

And lastly, a few notes for parents and guardians, friends and family, or anyone who knows someone with Usher syndrome and just wants to do their bit.

  1. Don’t blame yourself. When I was diagnosed with Usher syndrome, my mum had a hard time coming to terms with it. We had so many conversations where she would apologise and blame herself for my diagnosis. ‘It’s my genes that have caused this condition’, ‘I should’ve pushed for more investigation when you were younger’, etc. Realistically, she had no way of knowing, so why should she blame herself for something beyond her control? For my whole life, she has loved and supported me in the best way that she can. That’s all I can ever ask.
  2. Don’t be afraid to ask questions! If you don’t understand something that a medical professional is telling you, don’t be afraid to ask. There’s no such thing as a silly question, and you’re better off asking than being left unsure. If you’re not sure what would help your child in the home, ask. The lighting might be absolutely fine for you, but for your child, it may be too dark. For example, we have motion-sensor lights on our driveway so I can see properly when I’m coming home from work when it’s dark. Whilst my mum can manage to see without them, I don’t stand a chance! Things will change as your child grows and adjusts to their condition, and nobody expects you to have all of the answers all of the time. That’s okay! If you don’t know, ask. How else are you supposed to find stuff out?
  3. Look after yourself. The well-being of a child with Usher syndrome will be directly impacted by the well-being of their support network. If you’re struggling to cope or to process the diagnosis, it’s important to allow yourself plenty of time and to talk to someone about its effect on you, whether that’s professional support or just a loved one.
  4. Get connected! It can be very easy to feel overwhelmed or lost when your child or loved one is newly diagnosed, but it can help to remember that you’re not alone on the journey. Thousands of other families have been through – and are currently going through – the same experiences. There are whole communities of people who have been there, done that, and come out the other side. People will have answers to questions you might have, share concerns that you have, or might be able to offer solutions and advice to questions you hadn’t even thought of. A lot of times there’s no single right answer, but shared experiences can help you determine how you want to handle your situation.
  5. Remember that Usher syndrome isn’t the end. It’s a scary diagnosis – there’s no denying that. However, despite how it might feel at the beginning, it’s not the end of the world. Your loved one is more than just their Usher syndrome. That’s just a part of who they are, not their whole identity. They’re still absolutely capable of doing almost anything that anyone else is capable of! Encourage them to try new things, to broaden their horizons, to visit places they’ve never been before and do things they’ve never done before. Since my diagnosis five years ago, I’ve been to university, found love, visited multiple different countries for the first time, travelled up and down to comic cons across England, joined a gym, worked in retail, continued to do the graphic design job that I love, and a whole host of other things that anyone else is capable of doing. A lot of times, there are adaptations in place that can make things more accessible. For example, Access to Work has been a life-saver for me, since I work an hour away from home and am unable to drive. Linking back to being connected, so many people will be able to point you in the right direction of services that could help you and your loved one on this Usher syndrome journey.

So, who am I today?

My name is Asia, and I’m 25 years old. I’m still a Graphic Designer. I have a very dry sense of humour and laugh at things that I probably shouldn’t (including my disabilities!). I cry at films, a lot. I listen to heavy rock and metal music and love going to gigs. I’m a huge nerd, I love reading, and I go to as many Comic Cons as my bank balance will allow! I’m a resilient, occasionally funny, incredibly sarcastic young woman. I also happen to have Usher syndrome Type 2, and you’d best believe I’m proud.

Asia at a work party

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