Category: interview

by Chelsey Zumpano

Glin is a fellow Blogger and YouTuber, he’s also visionally impaired, but unlike me he has been raised by parents who also happend to be visionally impaired. So I asked him some questions about what it was like growing up.

1 Do you have the same visual impairment as your parents and either way what is the name/names of it?

I have the same conditions as my mother – aniridia and nystagmus. Aniridia means I don’t have an iris (the coloured circle) in my eye, so my eyes don’t adjust to changes in light properly. As a result, I’m very sensitive to glare and I find it hard to adjust in the dark. Nystagmus means my eyes shake and wobble all the time. This makes it harder for me to focus on things, unless they’re close up or enlarged.

My mother’s sight got a lot worse over time, so it’s possible mine could too. But so far it’s been quite stable and I can still see reasonably well.

My father’s visual impairment was caused by a rare condition called Behcets disease, which also affected his blood flow and immune system. But I didn’t inherit that. His sight was a bit better than my mum’s, although still not great.

2 Did your parents have different techniques for raising you (particularly when you were a baby and toddler)?

Not really, they raised me like any parent would, as far as I remember. They were very independent and able to look after themselves and me very well, so we were quite a normal family. We did have support from social services in terms of getting help with any equipment or adaptations we might need, but for general child-raising my parents were no different to any others at the end of the day. They were loving and supportive and encouraging like all parents should be.

3 Do you have any siblings and if not do you wish you did?

No, I’m an only child. It meant I got all the attention, as my parents looked after me well, so I was happy with that! It still could have been nice to have a brother or sister to play with, especially when I was struggling to make friends at school to begin with. But I got used to being an only child and was comfortable with it. And once I did start to make friends at school and gradually become more confident, the lack of a sibling didn’t matter.

4 Did your parents visual impairments help you to accept that part of yourself more easier?

It helped a lot, yes. The very first school I went to was a mainstream school, so I was around kids who weren’t disabled. I was bullied there because of my visual impairment, and the teachers didn’t know how to help. So going back home to my parents was a great comfort, because they knew what it was like for me, and I felt safe and happy with them. If they had been normal sighted and not understood, it could have been even more difficult for me, as I didn’t know any other visually impaired people at that stage. So I was glad and grateful that they did understand and knew how to support me.

And as soon as they saw I was being bullied, they moved me to a new school as quickly as they could. They found a special school for children with visual impairments, which proved to be much better for me. It still took me a while to build up my confidence, but whenever things were tough I always knew my parents would be there for me. And as I grew up they were able to show me how to do things independently despite my sight loss. So they helped me a great deal.

5 What’s your favorite memory growing up with your parents?

Family holidays. We would visit London a few times each year, to stay with my grandparents and see my aunt and uncle, and go out and about in the city. We’d go to museums, have walks by the Thames, explore the shops, go to musicals at the theatre, enjoy pantomimes at Christmas, etc, and we even did a few day trips to the coast of France as well. Where we used to live there wasn’t much to do, so coming to London was always a wonderful treat, as there’s so much going on here.

These days, my mother and I now live in London, in the house we inherited from my nan. Moving in felt very natural, because I’d already spent so much time here growing up, so it already felt like a second home. Being here brings back a lot of fond memories.

6 What are some different ways you traveled as a family?

My parents couldn’t drive, so in our local area we used buses to get around, or taxis if it was more convenient. And when we travelled longer distances, especially to London, we used the train. We would get a train that went straight through if possible, so we didn’t have to get off and change trains along the way. In London itself we mainly used the Underground trains (the Tube) to get around, but occasionally we would use the buses, or my aunt and uncle would drive us to places.

7 Did you ever think that there was anything different about your parents?

I knew my parents found it harder to do some things than other people did, and I understood that, because I was the same as them. And I also knew we weren’t ‘normal’ compared to most other people, because of all the normally sighted children I saw at my first school, and normal sighted adults I’d met as well. I just couldn’t understand why people like the bullies had a problem with it, until I got older and realised they simply didn’t understand and had issues of their own that they needed help for.

8 Did seeing your parents do things independently help you to be confident in doing those things yourself?

Yes. It was comforting to know that they were able to do things, because that meant I would also be able to, and they could help me if I needed it. They always found a way of doing the things they needed to do, so they were able to show me how to be independent, and they helped me to understand that most things are possible, even if you have to do them a bit differently to other people. And I still have that attitude today. If something seems hard, I always take a step back and try to think if there are better ways of achieving it, because there often is.

9 Did your parents use a cane or guide dog and do you have any favorite memories of that?

They didn’t use either. For quite a while my dad could just see well enough to navigate without an aid, so Mum would go out with him and be guided by him, instead of going out alone. And then as I got older, I became a guide for my mum and dad as and when necessary, because I have the best sight of all of us. And I still take my mum out now, she doesn’t go out on her own.

10 Did your parents use any assistive technology?

Yes. They had a big CCTV magnifier for reading things, a monocular (a little telescope) for looking at things when out and about (e.g. signs, bus numbers, train information, etc), and they used gadgets like talking scales in the kitchen, talking watches and talking clocks, a talking calculator, a talking tape measure, etc. And they loved listening to audiobooks too.

Another gadget they had was a Penfriend, which was a device shaped like a fat pen. It came with small labels that you could stick on things. You would record a message for each label, to describe the object that it was attached to, and then scanning the label with the pen would play the message back. It came in useful for Dad to identify his DVDs for instance, as we could stick a label on to each of the cases and make a short recording saying what it was.

So my parents did find talking technology very useful, and indeed my mother still does, as she has a Victor Stream Player for listening to audiobooks and the radio, and we have Amazon Echo machines that we can talk to. But we also use simple solutions like Bump ons, which are small raised dots that you can stick things. They’re useful on appliances like the cooker and washing machine where you have to turn dials, as you can put these dots on the numbers you most commonly use, and then you can feel when you’ve turned the dial to the number you want.

11 What’s your favorite advice your parents gave you about your visual impairment?

It was their general attitude rather than a particular piece of advice that stuck with me and inspired me. They had a very positive outlook on life and always encouraged me to try the things I wanted to do, because there’s always a way of achieving what you want to achieve. So I’ve had that mindset for a long time, particularly as my confidence has grown. I don’t let things get me down too much, I try my best at things, and I grasp opportunities when they arise. You only live once, so enjoy it and make the most of it as best you can.

12 What advice do you have to kids of parents with disabilities and to parents who have disabilities?

To the children I would say don’t worry that your parents are disabled. They are still normal people, they just have to do things a bit differently sometimes. It doesn’t mean they can’t look after you and care for you, and they can still enjoy themselves. They will still love you and support you and do everything they can for you, so that you can be happy and have fun and be successful. And you’ll learn a lot from them too, about how to be independent and make the most of what you have, which will be very important for later life. So you’ll be fine. Many of my visually impaired friends had visually impaired parents, and they’ve been very happy and successful, it’s not held them back.

Likewise to the parents I would also say don’t worry. Being disabled doesn’t stop you from being good parents and helping your child to live a fulfilling life. If you need help and advice along the way, then there’s lots of information and support out there. You may have social services and disability groups in your local area that can help you, there will be national charities that can advise and assist you, and you may be able to get funding for certain items of equipment or assistive services if you need it. And of course there is a wealth of information on the internet, from blogs and Youtube videos where people post about their experiences and give useful tips and advice, to Facebook groups where you can join in with community discussions and ask questions. So you’re definitely not alone. It may be tough sometimes, of course, but the support is out there, so make sure you seek it out and use it.

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