Hi! My name is Max, and I am a Cell Biologist and a Disability in STEM Advocate. I am committed to advancing inclusivity in the scientific community by using my lived experience to drive systemic change. I never set out to become a public speaker, but I found myself paving the way while I speak publicly on DeafBlindness, queer identity, and the realities of navigating STEM as a disabled professional, and proving that disability is no barrier to rigorous science. My work has been recognized by Sense, as I was awarded “Person of the Year 2022” for raising visibility and challenging stigma around DeafBlindness in STEM. In 2024, I received an Outstanding Alumni award from Nottingham Trent University for my work supporting underrepresented groups. I was also recognised as the UK’s most influential disabled scientists by the Shaw Trust in 2024. In 2025, I was the individual recipient of the Dorothy Jones Diversity and Inclusion in STEM award, from Applied Microbiology International. I speak extensively about intersectionality in the workplace and my experiences as a queer, DeafBlind, and disabled person in STEM. I work hard to be a role model for other marginalised people interested in science, as well as for the future scientists of tomorrow. I have been an intersectional activist and advocate for over a decade, spending most of that time championing dignity and respect for all. In my professional life, I am a registered scientist (RSci) with The Science Council and a member of Royal Society of Biology (MRSB). I am also an author, with my book, Quiet Practice – A DeafBlind Druid’s Guide To Practice Without Speech, being named as a finalist in the Page Turner Non Fiction Book Awards. This book captures my experience of VSS, hearing loss, and spiritual practice.
I have had VSS for as long as I can remember, and I consider myself having had it my whole life. However, I wasn’t diagnosed until I was 25. I only knew that people didn’t generally see the world like I did during lockdown, when I clicked on a ‘click-bait’ article about “10 rare conditions you didn’t know existed”. In the thumbnail, there was a snowflake, and I thought that the article was going to reference a rare condition I have called Cold Urticaria. But it didn’t. It talked about Visual Snow Syndrome instead. It showed pictures that looked eerily close to how I saw things, with static and after-images and everything. Further research showed me that I hit almost the entire criteria of VSS. I went to the optician to check my eyes and discuss the issue, and he confirmed there was nothing wrong with my eyes that would explain my symptoms better than VSS, and then I went to the doctors to confirm, and the rest is history. I learned that getting a slight tint on my glasses could potentially improve my light sensitivity, so at the optician we sorted that out. I chose an orange tint because I found warm toned lighting to be more comfortable than cool toned lighting, and luckily that did translate into a therapeutic benefit for me. It’s different for everyone. I had been creating content online for two years previously, so once I found my bearings, I started creating content about Visual Snow Syndrome and tinted lenses. I am also Deaf, and the combination of my visual impairment and hearing loss means that I am part of the DeafBlind community.
For me, the visual snow itself is not disruptive to me. I think this is because I have always seen it, so I’m used to it. I can imagine that if you have lived a life without visual snow, developing it either slowly or suddenly, can be very distressing. However, in my own experience, I struggle more with the symptoms around light perception: light sensitivity and night-blindness. For light sensitivity, I have a tint on my glasses. It started as an orange tint, but it’s actually easier to get a yellow tint, which I’m finding is working just as well as orange. I also use a white cane when it’s dark to help keep me safe. I find that being open and honest about VSS and how it impacts how I move through the world is the best thing I can do to overcome obstacles. There’s nothing I can do that’s going to make me able to see the world like most other people, but talking about it opens the door to adaptations, support, and understanding. Additionally, making sure I get enough sleep is crucial. Poor sleep causes what I call a Visual Snowstorm – a temporary worsening of visual snow, which makes it harder to do things that require sight.
Your life isn’t over, it’s just different! Developing VSS can of course be very scary, you’re going to be OK. It can be so tempting to go down the rabbit hole, and view it all as a terrible thing, but that’s not helpful. Focus on the positive things in life as much as you can. VSS can define you if you want it to, but life is about much more than what you see. You’ve got other senses you can use if you need to, and they can provide quite the distraction. Cats purr just the same, snow or no snow. If you need support, reach out for it. Only you know what you need. I can’t see very well at all in the dark, so I use a white cane to keep me safe. The alternative is only going out when it’s daylight, and we can’t be having that. I have visual snow syndrome, and I became a scientist anyway. I have visual snow syndrome, and I travel the world anyway. I have visual snow syndrome, and I live a life I’m proud of anyway.
Building community is very important to me, so I create video content on YouTube about Visual Snow Syndrome to bring people together, and to raise awareness. Living with a disability can make a person feel isolated, especially a rare disease like VSS. Having to explain yourself to curious (and sometimes disbelieving) minds can be exhausting. They don’t always get it. Making videos about VSS makes me feel like I’m helping. Whether people learn something about a condition they don’t have, or they use my videos to explain VSS to someone else, or they learn how to explain it for themselves. I also talk about other things on my channel, which shows that you can live a full and successful life with VSS. People often question how I can be a DeafBlind scientist, so I show them exactly how. I hope it inspires other people with VSS to pursue their own dreams, and live the lives that they want.
