Deafblind Techie

Usher Syndrome Awareness Day — 19 September 2026 When people talk about resilience, they often picture the dramatic moments. They picture someone standing on a stage, completing an enormous challenge or succeeding despite everything placed in their way. Resilience becomes something visible: a powerful speech, a finish line or an achievement that can be photographed and shared. Sometimes resilience does look like that. But most of mine happens on an ordinary Tuesday. It begins before I have even left the house. I make sure my cochlear implant processors are charged and that I have the technology I will need for the day. I check that my phone and other devices are accessible. I lay out my outfit not only so that everything coordinates, but also so that each item is easy to find when I need it. None of this looks particularly remarkable from the outside. It is simply preparation. However, when you live with Usher syndrome, preparation can be the difference between a day that feels managea...

Noisy environments can be challenging even for people without a hearing impairment. So what about those of us with a hearing device? Although these do provide access to sound, there are still situations where understanding speech clearly is hard, especially when there is a lot of background noise or when the person speaking is further away. That’s where Roger equipment saves the day! I personally use two types of Roger microphones based on the situation: the Roger Touchscreen Mic and the Roger Select. Yes, both can send someone’s voice directly to my cochlear implants, but that doesn’t mean they are both suited for the same task. Therefore, I don’t necessarily take them everywhere I go. A Quick Recap on Roger I've actually spoken about Roger before in Assistive Tech or Spy Device? Let's Talk About Roger, where I explained what the system is, why I use it and, most importantly, why the mysterious device I put in the middle of a table isn't spying on anyone! So I won't go...

An overview showing the standard High Contrast settings menu High Contrast Mode on Windows 10/11 wasn’t a feature I discovered for fun, but out of necessity. I first used it years ago to make the platform I sat my A-level exams on accessible, as there was no way to invert the brightness. At the time, it was a temporary solution — something I enabled when I needed it. More recently, though, I had to make a permanent switch. A screenshot of the Deafblind Techie Blog viewed using Windows High Contrast Mode The Day My Setup Broke One morning, I logged onto my PC and almost immediately had to pause. The text wasn’t white — it was grey. Flatter. Darker. Harder to identify, and simply exhausting to look at for more than 30 minutes at a time. Up until that point, I’d had no issues using dark mode with large text. But on that day, I knew. My sight had declined overnight. Why a Screen Reader Wasn’t the Answer I needed an alternative. Something that would allow me to continue working at a comput...

Most people take alarms for granted. A beep, a buzz, a quick vibration from a smartphone. Job done, right? Well… It’s not so simple if you’re hard of hearing, Deaf, or deafblind. For us, alarms look a little different — and thankfully, technology has come a long way so we don’t have to rely on hearing people to wake us up. So how does it work? A Vibrating Alarm Clock! There are alternatives like sunrise alarm clocks, but the one that has always been the most reliable for me is a clock that physically vibrates to wake you up in the morning (or afternoon!). Vibrating Alarm Clock: A Morning Hero Think of a vibrating alarm as a mini earthquake. Not silent — as hearing people often imagine — but a powerful, physical shake that cuts straight through deep sleep. Unlike traditional alarms that rely on sound, these use a bed shaker puck that sits under your pillow or even under the mattress. Why They’re a Game Changer Reliable even during deep sleep, when sunrise clocks or loud alarms might fa...

Earlier this month I travelled to Cardiff for the first ever EmpowerUSH Retreat , hosted by Usher Kids UK — and what a weekend it was! This year has been a pilot for the Empower USH programme, supporting young people aged 17 to 25 with Usher Syndrome as we work towards our goals for adulthood. The retreat was our chance to finally meet in person again and celebrate all the progress we’ve made after so many months of online calls and work.  🚆 Friday – The Adventure Begins The journey to Cardiff began straight after college with a train into London — my first big trip using Passenger Assistance without my parents. The staff guided me to the platforms and helped me find my seat, which made the journey smoother… if only there hadn’t been so many delays! Luckily, I met up with the southern crew along the way, and that made everything better. We passed the time chatting, joking, and laughing through the hold-ups. At one point, I even managed to give someone a fright — they thought I...

Your home is supposed to be your safe space, your sanctuary—the place where you can breathe and relax at the end of a tough day. However, living with progressive sight loss can mean that even your own home can feel like a minefield. What was fine weeks—or even days—ago no longer is. Even small changes can make a huge difference. From basic swaps, like changing your dinner plates from white to grey so you can see what’s left on your plate, or swapping plugs and cables to black so they’re easier to spot, to larger modifications, like painting doors grey to make them stand out against the wall or adding hooks to hang items such as your white cane or lanyard for quick access. These little adjustments all add up, creating a space that’s much easier to navigate. It’s not about ripping your house back to bare bones—it’s about noticing the small obstacles that trip you up daily and finding creative workarounds. I’ve also started labelling things far more than before—switches, appliances, drawe...

Around Usher Syndrome Awareness Day, I find myself reflecting. This is my realization. It begins from day one, really — the moment I was diagnosed — but it didn’t fully hit me until I turned sixteen. The years between then and now — three years — have only strengthened this understanding. For years, I barely noticed the changes. Then sixteen arrived, and the truth hit me: my world wasn’t the same anymore, and neither was I. Sixteen changed everything. The rules I trusted — gone. But it didn’t end my story. It just started a new one. Usher Syndrome doesn’t care how old you are. It doesn’t care about your dreams. It barges in, changes the rules, flips the world you thought you understood. At first, it feels like that’s all there is — new rules you didn’t ask for, limitations you didn’t choose. Rules that leave you scrambling, wondering if life will ever feel familiar again. But here’s the thing: those rules? They’re just the beginning. Yes, they feel daunting. Yes, they shake...

Darkness has always felt like a contradiction to me: part threat, part refuge. And now feels like the right moment to share these thoughts—as the days shorten and we edge toward the clocks going backwards for winter. Being alone at night can be utterly terrifying—filled with uncertainty, hidden dangers, and a suffocating sense of unease. While I could go out alone at night if I absolutely needed to, it’s not something I would ever choose to do. There would always be someone else there willing to guide me. Even if I know the route by heart and could technically walk it alone, I still move closer to the person guiding me. The dark adds strain: scanning for obstacles like overhanging branches or bins sticking out on the pavement, flinching at sudden voices of passersby that appear without warning. The street at night feels unpredictable—every shadow a question mark. And yet, at the same time, there’s something deeply calming about the stillness that darkness brings after a long, chaotic ...

When you realise everything you knew is changing, people often expect you to be fine with it instantly. But acceptance isn’t something that happens overnight — it’s a journey, full of highs and lows. It’s like navigating a maze: eventually, you make it to the other side, but first you hit dead ends, sharp turns, and confusing paths. I speak from experience. I was diagnosed with Usher Syndrome at six. My parents never kept it from me. They explained what it meant — that my sight would get worse, that one day I might go completely blind. I was encouraged to ask questions. But as a child, how do you fully understand something that hasn’t begun to affect you? How do you grasp the weight of it before it’s real? For the longest time, I didn’t. I genuinely thought everyone saw like I did — that no one could see in the dark. It wasn’t until a Year Six residential trip to PGL that I realised how wrong I was. One evening, I was walking with my best friend and a teaching assistant. Suddenly, I...

There’s no shortage of apps designed to support people with visual impairments. You’ve got the familiar built-ins, like Apple’s Magnifier , and specialist tools like Be My Eyes , which connects you with volunteers who can describe what’s in front of you. But my favourite low-vision app? It’s probably not the one you think. It’s called NowYouSee – Helping Colourblind on iOS. NowYouSee - Helping Colourblind App Logo If you’re on Android, Colour Blind Pal works in a very similar way.  Colour Blind Pal App Logo Here’s the twist: I’m not colourblind. So why on earth is this my go-to app? Why I Use a Colourblindness App for Low Vision I have Usher syndrome , which includes Retinitis Pigmentosa (RP). RP is a progressive sight-loss condition that first steals your peripheral vision, then gradually eats away at your central vision too. Eventually, it could cause total blindness for some people.  Right now, my peripheral vision is long gone. I estimate I have around five...

🏕️ USHthis UK Camp 2025 – My Fourth Year, My Second as a Mentor Last Saturday, on the 26th of July, I travelled down to Fairplay House in Essex for my fourth USHthis UK camp — and my second year attending as a Mentor . 🌍 A Global Movement with Local Magic USH This began in the US back in 2019 and made its way across the pond in 2022 , with the first UK camp held at Ghyll Head House in the Lake District . I’m so thankful it did. This camp is crazy and chaotic , in the very best way. It’s a place where time is but a concept , sleep is rare , and fun is constant . It’s loud, energetic, emotional , and above all, it’s a space where those of us with Usher syndrome can just be ourselves , completely and unapologetically. 💥 Adventures, Baking & New Challenges With the support of our amazing Hearing and Sighted staff and volunteers , we pushed ourselves to new heights — literally. We climbed the high ropes course , plunged into lakes at the inflatable water park , and embraced brill...

Just in case you hadn’t caught on — I have Usher syndrome. Specifically, Type 1D.  My parents tell me I was born profoundly deaf and received cochlear implants at 16 months old — though I obviously don’t remember that. Anna aged 16 months just after cochlear implant surgery. What I do remember is the frustration when the batteries would die. I’d just want to play with my friends, and suddenly my world would go silent. That feeling never really went away — it followed me from infant school all the way to sixth form. Ironically, some of those same friends are still in my life today — and they’ve pretty much appointed themselves my personal battery monitors! Early Support I’m lucky to have parents who put in countless hours of speech therapy. These days, most people don’t even realise I’m deaf unless I bring it up — usually during a laugh over the words I still can’t pronounce properly. (It’s a good reminder of how far I’ve come.) From sounds like th and f to words like shoulder ...