Annalisa has Retinitis Pigmentosa, and started to lose her sight in her teenage years. Otherwise known as RP, it's a genetic disease that affects the parts of the eye that deal with peripheral vision, night vision and light adjustment. She speaks to Jill Barkley about her life growing up and gradually losing her sight, her career as a writer, and her realisation of the spectrum of sight loss.
(The text below is verbatim transcript from an interview with Connect Radio)
"My condition was diagnosed when I was 14. Before that, it was a bit of a mystery, as the symptoms weren’t so obvious to me or to my family – it was only once it had been explained that we were like, ‘oh, right!’
The main feature of my vision is that it’s very narrow tunnel vision. So I have a reduced periphery and a very small, sort of pinprick central vision that I operate with. I can move that patchy central vision around, with my eyes – I sort of function by building up the big picture, and it all happens quite unconsciously. I can get away with relatively little vision but function quite well, one way that a friend of mine described it that I thought was quite beautiful was: “It’s like looking through a fogged up window with a tiny little circle rubbed out in the middle of it”.
The level that I can see really depends on the situation. If I’m in an environment that isn’t changing, especially if I’m sat at a table with someone having a conversation, I really do have all the information I need. It’s only when I’m in a moving situation when the cursor on my screen really can’t keep up with the constantly changing information around me, that’s when I really struggle.
It wasn’t easy adapting. It was made slightly harder by the fact I was working in television! I got myself into a few messy situations and I didn’t really want to have to tell people that I couldn’t see very well, because the environment I was operating in and people I was operating with is a very cut-throat industry – people are very busy and don’t have a lot of time. They don’t often have a lot of time to make adaptations."
"I think people do tend to assume you’re fine unless you’re really obviously not fine, although I’ve never had actual abuse. The only filthy looks I’ve had (when commuting without the cane), and that trouble me, are just from getting in the way or being inadvertently rude. I had years of commuting in London and not using my cane and just getting in the way all the time.
And I never had time to communicate that I was visually impaired – I’d just walk around saying ‘sorry, sorry, sorry!’ which is really tough and no one should have to put up with that. I suppose that what’s hard is quite often, as a visually impaired person, you’re trying particularly hard to consider everyone around you, you’re working overtime, and yet you’re constantly being criticised for being inconsiderate which feels very cruel.
And it is exhausting being visually impaired! And it’s almost like we have to be given permission to say, actually "it’s really tiring being visually impaired”. And you do feel disoriented and stressed out just with the very simple task of getting around or doing the school run, for example. I don’t know why more people haven’t spoken about this! It’s almost as though we feel like we shouldn’t complain because we have this tiny bit of sight that we’re so grateful for. It’s a very difficult line to tread and to say ‘I’m misunderstood’ because no one wants to be that misunderstood person. There’s a big challenge to try and get our voices heard and try and get our message across in a way that will be listen to and a way that will be understood properly."
"I’m very lucky in that writing is my thing, it has always been my thing, and one way or another I’ll always find a way to write. And I can do it from home, which means I don’t have to schlep around all day!
There are downsides, there are no certainties and you have to take enormous risks. So I will work for months on a script, totally unpaid, with the hope that someone will then buy it at the end of the process and pay me! So it’s a very risky business. I’m working at the moment on a TV series idea on goalball, which if it ever comes to fruition, should have an amazing visually impaired cast and crew!"
"You can’t be a bit dead. It’s a binary thing. You either are or you aren’t – same goes for pregnancy. But what about blindness? Can you be a bit blind? Is that allowed? And how does that work? What does it look like?"
Find out more about Annalisa's thought's on the complex nature of sight loss and what that means for people using mobility canes in her recent Guardian article.