I have Usher syndrome type 2, which is a combination of retinitis pigmentosa (RP) alongside hearing loss. The most common misconception about my sight loss in particular, is that I don’t 'look blind'. There’s a whole spectrum of sight loss out there and that’s what people need to know about.
I have macular degeneration. The first couple of years were horrendous. It was like a bereavement really... I was so afraid. People are absolutely brilliant but without the white cane, I would not be as confident. The freedom of living is brilliant.
I have glaucoma, and I have no light perception at all in my left eye and in my right eye, it’s like I’m looking through a really murky, watery fog machine. I believe we should always be ready to engage with the general public, educate them and help to normalise disability.
I’m registered as partially sighted due to having cerebral palsy. I feel that I’m very independent and can achieve anything that everybody else can do. I just have to do it maybe in a slightly different way to other people.
“I have retinitis pigmentosa, have lived with limited vision for many years and have had surgery to remove cataracts. I have experience of the impact of sight loss on mental health. Being involved in volunteering is crucial for my wellbeing.”
“I have retinitis pigmentosa (RP). When I tell people I’m severely sight impaired, the general public usually want to help. But they sometimes grab your arm without asking or tell you things you already know – they’re unaware of what you can see, what you can do and how independent you are.”