Laura and Jorja
Laura’s daughter, Jorja, has had nystagmus since birth, and she also has photophobia, stigmatism and a converging squint, meaning that her spatial awareness isn’t great, and her peripheral vision is very poor.
Jorja was also diagnosed as Coeliac just after her fifth birthday, so she must have a strictly gluten-free diet.
Laura said: “She’s now at that crossover age, where we’re trying to give her some autonomy, getting those life skills to go to a shop and buy things. So, either we research what she thinks she might want to buy ahead of time, or I have to let her choose things and I check later.
“When I’m not with her, Jorja calls me to search for something online, so that I can read through things, or she’ll ask somebody at the shop to see if they know. But when she rings me to check, that means that she’s relying on me, rather than being able to ask for something that should be accessible.”
“As with a lot of labelling, the information’s in the tiniest print at the very end of the ingredients list, and Jorja can’t read that. So she ends up buying things that she always has, because she knows that they’re safe – but this completely limits her free choice.”
Being forced to rely on others
“If you’re severely sight impaired, I don’t think there’s any way of gaining the information you need, so you have to constantly trust a sighted person to tell you. Nobody should be made more vulnerable through the lack of accessibility.
“We should all be able to make an autonomous choice with all the available information. It makes me quite angry, the idea that there’s still this "here’s the small print" attitude towards it.”