It’s almost as though the eye care champion job was created specifically for Grace. She understands perfectly the eye care journey people with learning disabilities go on, as she has been on that journey herself.

Early vision problems

From a very early age, Grace has had problems with her eyes. She had surgery on her cataracts when she was less than a year old, had Charles Bonnet Syndrome in her 20s, and has glaucoma.

It took Grace a while to get the eye care she needed.

My previous support team had no training in eye care and were not very motivated to learn about my visual impairments. They struggled with guiding me as they felt I should be more independent, inadequately supporting me at eye clinic appointments and failing to communicate with me effectively. They thought I was being difficult when I said I couldn’t see. I lost a lot of confidence and suffered from depression as I was not being taken seriously.

Hallucinations from Charles Bonnet Syndrome

I had Charles Bonnet Syndrome, which is an eye condition that causes visual hallucinations because there had been a deterioration in my sight. I used to see snakes and spiders running across my arms, on the floor and on the walls. This was terrifying. I didn’t tell anyone that this was happening to me for over a year. I started becoming anxious and angry, which wasn’t like me at all.

Grace didn't tell anyone about the hallucinations because she was afraid of not being taken seriously. Eventually, when she was really struggling, she spoke to her GP. Although there’s little that can be done about Charles Bonnet Syndrome, she was able to understand the condition better. Eventually the syndrome disappeared after Grace went into intensive care due to unrelated medical complications.

Standing up for others

Her eye care journey has made her more determined than ever to stand up for people with learning disabilities. Last year, she delivered a presentation to the staff at the Bank of England to encourage greater accessibility for people with learning disabilities and sight loss.

Now Grace is a SeeAbility Eye Care Champion, which is her first permanent, paid role. It’s a real step forward for her, showing just how far her confidence has developed in the past year.

When I got the phone call to say I’d got the job. I cried. It made me feel ecstatic because other people were thinking so highly of me. It made me feel so good that people think that I can do things. But that’s SeeAbility for you – they see ability.