I’ve had an increasing number of parents responding to my videos and written posts since I started blogging, as it’s given them comfort to know that being visually impaired isn’t a barrier to living a good life. And I’ve been very humbled and pleased to be able to give that reassurance. So I just wanted to make a quick post and video addressing them parents directly.
This post has come about for a few reasons. Mainly it’s because I’ve had a lot of parents responding to my videos, particularly my Living With Aniridia and Living With Nystagmus videos, and the How I See video that I did for the RNIB, and my other disability-related videos where I talk about my eye condition and my life in general.
Over time, quite a few parents have responded to those kind of posts thanking me for the reassurance that having a visual impairment isn’t a barrier to living a good life. It’s become apparent that one of the major benefits of having an ever-growing community of visually impaired and disabled bloggers online is that it’s demonstrating to parents that sight loss isn’t a bad thing for their child, and that they can live up to be happy and fulfilled.
Another Youtuber, for instance, has also made a video on the same subject, which was also a big inspiration for me doing this post. How Casey Sees It is a wonderful channel, where Casey talks about her experiences and offers lots of useful advice, and she’s made her own video with her message to parents. So I encourage you to watch that as well.
So I’m very glad that I can be one of the many visually impaired people offering that kind of support and comfort, because it’s not something I had really considered when I started doing this stuff. I was focused on connecting with other visually impaired people given that I was starting a big new phae in my life by moving to London, while also explaining to sighted people about how to interact with us, and explaining what it’s like to be visually impaired.
So to know that my messages are helping parents as well is brilliant. I love that very much, and thank you to all of the parents and carers who have got in touch with their questions and feedback so far. I’m always happy to answer questions as best I can about my experiences and my eye condition.
The other thing that prompted me to speak up on this topic was a recent campaign by a disability charity, which featured parents saying how terrible it was to have a visually impaired child, as if it was the end of the world. The goal of the campaign was fine – funding more research into the treatment, cure and prevention of conditions causing sight loss – but portraying sight loss as such an awful thing is not exactly a supportive message to new parents, or a truthful message for that matter. And it offended many people in the visually impaired community, who felt they were being marked as lesser members of society, a stereotype we’re trying to eradicate rather than enforce.
It is of course understandable that many parents are scared or anxious at the thought of having a visually impaired or disabled child, because it does sound bad, especially if you’ve never been in that situation before. So I don’t blame the parents involved. The issue is more that an organisation claiming to support us should be more than aware that it’s not as simple as that.
So the message I want to get across is that being visually impaired is not the end of the world by any means. It’s not a terrible thing. Yes, it can be difficult and awkward and frustrating sometimes – but then that can be life for many non-disabled people for all manner of reasons. And ultimately, given all the support out there these days, it is entirely possible for a child with a visual impairment to live a happy and successful life.
So try not to worry or panic too much, Your child will adapt and adjust as time goes on, because they have to. And remember, every single child that is born has to grow up getting to know the world around them, and how to do things, and how to interact with people, regardless of whether they have a disability or not. Every single child grows up into a world that they’re completely unfamiliar with, and they have to take time to adjust to that.
Your child will simply need to adjust to the world and learn to do things in a slightly different way to other children. And they might need a bit of extra support or adaptations to enable them to do that. And there is a lot of support out there, whether it be getting things printed in a large font or a different coloured paper or in braille, or using magnification or speech on a computer, or using a long cane or a guide dog to get around, or having a support worker with them, and so on.
There is so much support out there these days, with technology and disability organisations and social groups and medical practitioners and online resources and so on. It’s not always obvious that it’s there to begin with, so you may have to dig around a little at first. But by looking for resources on visual impairment and disability, and your child’s specific condition(s), you’ll be surprised what you find.
The internet is the perfect starting point for this kind of research of course, because disability organisations and groups all have websites these days, and there are tons of Facebook groups and forums, ranging from general disability discussions to groups focused on specific conditions. So you can talk to other disabled people and parents online and get plenty of advice and guidance. It’s worth digging around, that’s for sure. You’re really not alone any more, not in this interconnected world.
I’m not saying it will always be easy to get the support that you need. I know that in terms of funding or your location or whatever it may be, sometimes it can be difficult to get support. But fight for it. Do what you can to get the support that you need. There may well be other people online having similar struggles, in which case you can come together to put additional pressure on the powers that be to get things changed.
But also remember that you won’t initially know exactly what support your child needs, because it won’t be obvious to the child or you, and it will evolve over time as they grow and develop as well. So there will be trial and error involved. Some things you try will work, some things won’t. Sometimes your child will surprise you by the things they can or can’t do, because of the assumptions you’ve made or the things you’ve been told. So don’t be surprised if your child surprises you. It’s a learning experience for you just as much as it is for them – but then, as I said before, that’s really the same for any parent regardless of disability.
The one note of caution I would give about online research in particular is not to assume that everyone with your child’s condition is the same. Conditions are very variable in terms of their effects and severity. You may see parents or disabled people talking about experiences they’ve been through, but that doesn’t mean the same will happen for you or your child. There will be some effects and traits and behaviours that you can relate to, of course, but there will be some instances where your experiences don’t fully match.
Similarly, be very careful when looking up medical advice online. Look up general information about the condition by all means, but don’t assume that what you read on, say, Wikipedia or another parent’s Facebook post is a factual account of what will happen to your child. Because, again, disability affects everybody in a unique way. By all means be aware of things in case you have a similar experience to someone else, but ultimately you should trust your medical practitioner first and foremost where medical diagnoses are concerned.
There isn’t much else I can say without repeating myself. But to conclude, I just want to say that you shouldn’t worry about the future, because it’s impossible to know how things will turn out. Just lay the best foundations you can now, because that will make a big difference later on. Take it bit by bit, a day at a time, giving your child the love, time and support they need to grow and develop, and they will be fine. They may struggle a bit along the way, sure, but that’s no indication of what things will be like later, it’s just part of the learning process for you and for them.
The journey to adulthood is a long and sometimes difficult one for all children regardless of disability, we’ve all been through it. So just be there to support them as and when they need it.And make sure you seek out and use the support that you and your child need too, be it from medical professionals, social services, disability organisations, talking to other parents and disabled people in the same situation, and so on. That’s what it’s there for. You’re not alone in going through this.
I struggled early on with bullying and was very shy for a while, but went on to make lots of friends, get a degree, and secure a job that I’ve held for 13 years to date, and have just celebrated my first year living in London, getting out and about and trying new things and meeting new people. And I’m making videos and writing posts like you see here. And that’s a relatively basic existence compared to some disabled people I know.
If you explore the blogging community, including some of my favourite bloggers, you’ll get a good sense of what many disabled people have achieved. And I also have pages linking to disability resources and assistive technology that you may find useful as well,
So don’t panic. I know that’s easier said than done, and I know it’s not an easy journey bringing up a child. But please be assured that being visually impaired or disabled isn’t the end of the world. Your child has every chance of leading a happy and successful life. Don’t let anyone tell you otherwise. With the right support, they’ll be fine. 🙂