I have a genetic eye condition. There’s a lot of research going on at the moment into it, in terms of possible treatments. I follow this research with interest. I like to be informed, but more than that, if the opportunity became available to get involved with the research, I’d be interested to know more.
One thing that makes me a less likely candidate for any possible treatment is the fact that I’ve never been able to see before, so my brain would need to learn to interpret any visual stimuli it received, either through gene therapy or implanted technology.
That would definitely be more hard work than someone would have to do if they had been able to see before. They would be able to relate what they were seeing to what they had been able to see in the past.
Still, I don’t know that It would be all bad to start from scratch. Yes, you’d have to learn about things like colours and depth perception like a small child, rather than drawing on your memories, but on the other hand, any sight would be a bonus. You wouldn’t keep saying “this isn’t as good as what I used to be able to see”.
Why I think that being able to see would be a good thing
I sometimes wonder what it would be like to see loved ones for the first time, or to look through my possessions and ask myself “did you really wear that colour lipstick?! I don’t know what colours I like because I’ve never seen them. How would I rate the advice about my physical appearance that I’d been given over the years? Would I make changes to my home décor? Would I discover a favourite colour I never knew I liked? What would I find aesthetically pleasing? How good would my visual special awareness be. Of course a lot of this would depend on the treatment and level of vision it afforded, but they are interesting questions nonetheless!
There would definitely be a learning curve involved, but I think of the many practical ways in which life would be easier. Getting around without using a cane, reading things without making sure they were accessible, finding things that were dropped or mislaid, using any website, irrespective of whether it had been designed accessibly.
However hard I work to lead a full and independent life, there are still times when I need to ask for help with things that others can just do without thinking about it. Yes, we all need help at times, but having a disability often involves a lot more planning to make sure you know exactly where you’re going, where something is, or how to put in place alternative strategies for doing things when the standard ways don’t work.
The first time I got really frustrated about being visually impaired was when I was about 9 and couldn’t go and bring the horses in from the big field to be ridden. Yes, there are things I could have done to make this task doable as a blind person. Plenty of blind people ride and have their own horses. But it suddenly struck me as a practical example of a task which was easier for my friends and would require more planning on my part. So I found something else to do and went home and cried about it where nobody could see!
This isn’t supposed to be a negative post, but I want it to be an honest one. Sometimes stuff is hard, and I don’t subscribe to this “nothing is a problem unless it’s a problem other people create for me” mentality. So in a practical sense, being able to see would make life easier.
I continued riding throughout my teenage years and we found other ways of doing things as you can read in my riding post. But sometimes it would be nice just to get on with things without all the additional thought and adaptations. I also touched on this in my I’m tired post.
Then there are the nice-to-haves. Not being able to see a beautiful view, wild animals, or the sunset isn’t going to change the practicalities of your everyday life, but there are some things that even the best descriptions don’t do justice to if you’ve never seen them before!
Many people name not being able to drive as being a major set-back for people who can’t see. I don’t really see it that way. Sure, life is easier now that I have a partner who drives, but I lived for many years in London, where many of my friends didn’t drive, and driving wasn’t essential. It’s a bit different once you leave the capital, but still I wouldn’t say not being able to do it is high on my inconvenience list. It’s maybe no bad thing that I can’t drive given my low stupid behaviour tolerance threshold. I probably wouldn’t be the most calm and forgiving person on the road!
But getting around new places without having to memorise everything would be nice, as would exploring the countryside or visiting new places without having to think about route planning and sat nav. And before anyone comes up with the objection that some blind people do that – I know they do, but I find it stressful! Things are rarely fun and stressful at the same time!
When I was a baby, my family were basically told that there was nothing that could be done about my eye condition, so they should just go home, not think about a cure, and get on with teaching me to gain the skills I’d need. In some ways I can see the value of focussing on the here and now, rather than hoping for something in the future that may never come, but it’s still good to be curious. It’s still good to find out what’s happening in medical research and see whether any of it is relevant.
I agree it’s not helpful for parents of newly-diagnosed children to focus only on what might happen, when they could instead have a very real influence on what will happen. It’s important to teach children how to find other ways to do things that don’t rely on sight, and to focus on all the things that they can do and enjoy, rather than the few things that they can’t. Blind children need to know that there’s a big world out there, which can be explored with or without sight.
Technology has opened up so many doors for us. Using my assistive technology, I can do things independently that I would have needed help with if I’d been born 50 years ago. That’s amazing! You definitely shouldn’t be defined by something that you’re physically unable to do.
But we live in a visual world. If your child wants to experience that for themselves, and the option becomes available – well they should have that option too in my opinion.
Do all blind people feel as I do about sight restoration?
Of course not! It’s a massive group of individuals and I’d be surprised if you could find anything that all blind people agree about!
However, I ask the question because often people generally assume that blind people do want to see, and it even surprised me that this could start such heated discussions.
I had wrongly assumed that most people see the question in the same way as I do, but not everyone does, and that’s ok. It’s their right.
Some people feel there’s nothing missing from their lives as they are now. I don’t really understand this, but it’s definitely something that should be respected.
Perhaps I see it differently because I’ve never really accepted blindness as part of my identity. It’s something that determines how I do certain things. It’s something that I’m often asked about. It’s something that has led me to focus on and develop my other senses more. But it’s not intrinsically part of who I am. I wouldn’t miss it if it wasn’t there tomorrow. Other people view this differently, and that may explain why they wouldn’t want to give something up that they see as part of their identity.
There can also be differences between the opinions of those who have never been able to see and those whose vision has deteriorated.
I’ve even had people say to me “you can’t miss what you never had”. This is true in the sense that I didn’t actually lose something that I had before, but if you live in a world where everyone around you has something that you don’t, and many services, leisure activities, and ways of accessing information are geared to having that sense – then even if you have never had it, there’s still a way in which you can miss not having access to it.
Not everyone feels that way though, and from my observations, there seem to be a higher number of people that have never seen who say they are not interested in seeing or anything to do with being able to see. They know no different and are content with that.
Another comment that often comes up in these discussions is that people don’t want to be “fixed” as though other people see them as broken if they aren’t able to see. I do understand this to some extent – it’s tedious if people focus on what you can’t do, even though in some areas you may have accomplished more than the person feeling sorry for you has. Though I’m sure it’s not their intention, if all someone can do when they meet you is talk about the things that you can’t do, it can devalue all the other things that you have achieved. That doesn’t feel good.
People should be accepted as people, and not seen as broken machines that need to be fixed. I can accept that. However, I see people working in medical research as allies, not as those who want to fix me.
Having said that, I am far less positive about random strangers who come up to me and try to start praying for me to be fixed. This is not ok!
In terms of the medical treatment and broken or fixed debate, there is part of my body that doesn’t work as it should, and if given the choice, I’d like to have something done about that, so long as I understand what’s involved and the risk of no dangerous side effects is not too high.
so what now?
Writing this post is not to say I’m dissatisfied. I have a wonderful partner, some amazing friends, a lovely home, a job that interests and challenges me, and plenty of things that give me enjoyment and fulfilment in my spare time. But there are days when I’m not ashamed to say that being blind is hard work or there are things that I would really like to experience visually. That’s why I follow the research and keep an open mind.
Life is good, but I’m not going to close my mind to something that could make it even better!
I don’t expect everyone to agree with me, but I do expect everyone to be civilised in the comments!
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