On Sunday 4th August, I travelled from South Yorkshire to Windermere for the annual UK USHthis Summer Camp. After speaking at the Usher Kids UK Family Day in October 2023, I was asked to consider attending the camp as a mentor. It was a tough decision but now, at the end of the week, I can honestly say it’s one of the best decisions I’ve ever made.
As I write this, it’s the final night of camp and I’m sitting in the lounge of Gyll Head Outdoor Education and Activity Centre – the location for this year’s summer camp. To my left is Ava, and opposite me are Ethan and Lilly. All three are members of the USHthis International Team and are some of my fellow mentors. Although we only met six days ago, they, along with so many other camp attendees are people whom I now proudly consider as friends. That’s the USHthis effect: the ability to form connections within days, hours or even minutes, bonds that would ordinarily take months or even years to develop.
The week in a nutshell
I would love to be able to write a detailed overview of my week at Summer Camp but honestly, it feels like time works differently here because I have no idea exactly what activities I did and when I did them. From climbing and zip lining to scrambling and canoeing, I’ve pushed boundaries and faced fears every single day. If, before my diagnosis, someone had told me that a group of deafblind young adults would hike to Cathedral Cave or scramble around Humphrey Head, I’d probably have stared in disbelief or laughed in their face. But, with the support of each other and our sighted and hearing volunteers, we’ve done those things – and a whole lot more.

We’ve done a lot of activities and there’s always been something going on, so there was never a dull moment. It’s impossible to choose just one highlight from such an incredible week, but I think mine would have to be either canoeing across the lake or trying s’mores for the first time at our Friday night campfire! As well as the incredible range of activities during the week, there’s also been a lot of banging on tables and shouting chants after mealtimes which, admittedly, felt completely bizarre on the first day but by the end of the second and third days, I’d fully embraced it and immersed myself in the experience. Oddly enough, I now know that I’ll miss those rowdy, table-banging, chant-shouting mealtimes when I’m home. It’s all part of a classic American-style summer camp, something that many of us with Usher syndrome would probably never have expected to be able to experience.
My takeaways
Within the space of one week, I’ve gone from having only ever met a couple of other people with Usher syndrome, to being surrounded by people like me in a camp where sighted and hearing people are the minority! Even though I’m a mentor, there’s no pressure to have all the answers. We’re actually still encouraged to learn from each other and to ask questions. Despite already being in a place where I’m very comfortable with my diagnosis, I’m leaving camp feeling more confident, more self-assured, and more willing to advocate for my needs than ever before.

Camp provided me with a lot of opportunities to reflect on my own journey. When I received my diagnosis, my family were beyond supportive, but ultimately, they didn’t understand what I was going through – and how could they? When it came to it, I did this journey on my own for six years, and I felt so isolated, as though I was the only person who knew what I was experiencing. I got my diagnosis, grieved, processed it, and then got to where I am today on my own. The USHthis Summer Camp exists so that the next generation doesn’t have to do it on their own – they can connect with peers who are on similar journeys, they can speak with mentors like myself, Sofy, Anna, Marni, Gavin, Lilly, Ethan and Ava, who are older (but not necessarily wiser!), and they can have an absolute blast trying new activities and doing things that they might not have thought possible when they received their diagnosis.
The biggest of big hands…
I can’t write a piece about my amazing week at camp without touching on the amazing people who made it possible. To every single camper, mentor, volunteer and staff member who travelled to be there – the week would not have been the same without each and every one of you. You all have your place within the Perfect Circle and, consequently, within the USHthis community. Usher Kids UK, Ava’s Voice, UsherKids Australia, Deafblind UK… The list is almost endless, but camp truly would not have been possible without the contribution of every single person and organisation involved.
In the wise words of Ava’s Voice…