Alan, 24, Aniridia

I really enjoyed the interview I had with Alan from Winnipeg, Manitoba. Alan has aniridia, and has a perspective that I hope that you find as as refreshing as I do.

Adam: Hi, Alan. Thank you so much for agreeing to let me interview you. Why don’t you start off by telling me a little bit about who you are, how old you are, where you’re from, what you’re studying and perhaps what you do in your spare time?

Alan: Hi, Adam. And thanks for having me. So, yeah, hello, as stated I’m Alan Bridgeman. I’m a 24 year old white cis male from and living in Winterpeg, wait scratch that, Winnipeg, Manitoba. I’m currently in my seventh, and what I hope is my final year of my bachelor of computer science at the University of Manitoba. I currently work two jobs, one as an Assistive Technology Specialist at Vision Loss Rehabilitation Manitoba where I have the opportunity to help educate members of the visually impaired and blind community about technology. The other is as the Technologist for the Mamawipawin Indigenous Governance and Community Research Space where I develop websites, databases and basically make and modify technology to fit the researchers needs. I also volunteer significantly as an accessibility advocate in my community and enjoy watching TED talks and sitcoms in my free time.

Adam: That’s amazing! I’m really fortunate to be interviewing such an accomplished young person. So tell us a little bit about what your disability/disabilities is/are and when you were diagnosed etc. However, please only go into as much detail as you’re comfortable to speak about.

Alan: Yeah, so, I’m visually impaired with a hereditary form of the condition Aniridia, which is the absence of the iris. What that means, for the most part, is I’m incredibly near sighted so, I have a visual acuity of approximately 20/400 and 20/300 uncorrected. Which roughly translates to what someone with normal vision can see at 400 feet I can see at 20, from what I understand at least. To give a bit better idea I tend to describe this similar to two people standing side by side one with a pair of binoculars one without. I’m not an eye doctor so I don’t know the full details but this also involves nystagmus which is the rapid movement of my eyes which I’ve also heard can be disconcerting for people at first.

Adam: No worries, I’m not unsettled in the slightest! That must mean you definitely have challenges associated with your disability. Do you wanna speak about those challenges and what you do to overcome the challenges associated with aniridia?

Alan: So, of course, having had my disability since birth I’ve encountered a lot of challenges, reading and writing, playing sport and physical activity, being able to communicate properly only to name a few. But I think using technology like computers where I can magnify text so that my reading and writing ability is more or less the same as everyone else. Playing sports like goalball or less visually intensive sports. And learning to communicate vocally more efficiently including listening more carefully for tone and vocal cues in the absence of non-visual indicators are only a few of the techniques and methods I use to get around some of these challenges. That all said, I don’t pretend to have it all figured out and I think it’s important that every day I try to keep a look out for new or interesting ways to address problem or improve the existing skills I have.

Adam: Absolutely, everyday we’re growing and learning. What would you say is a common misconception about aniridia? Or perhaps what would you want others to know about it?

Alan: That’s a hard question, I think you could probably do an entire course on just the misconceptions around visual impairments and/or disabilities. But I think the ones I most often am drawn to are: that a person who is visually impaired or blind can’t do something. The only reason they can’t do it is because there are close minded people who lack enough imagination and effort to make it happen. Anything is possible with enough imagination and effort. The other and this might be a bit tangential but this misconception that there is a huge expense to make things accessible for the visually impaired or blind is simply not true. But even if it was true, how often do people spend tons of money on things like windows, lights, paints and other visual aspects of our environment and if people can have the money to do that how can they not have enough to make it accessible.

Adam: That’s part of the reason I wanted to start this blog: to really stop on those misconceptions about disabilities like this…so what advice would you offer to a student who also has aniridia?

Alan: I think I’d offer two major pieces of advice. First, communicate, communicate, communicate! I think it’s absolutely critical that you continually try to communicate be it with professors, advisors, peers, etc… unfortunately, unless you say something ninety-nine times out of a hundred things will keep going exactly the same way they were before. Regardless if that’s good, bad or ugly. The other being, experiment and explore supports available to you so that you can find the supports that work best for you, in short, don’t actually listen to me, find your own way. If that’s using technology as it was for me more often then not, great. If that’s having friends and family help you in some way, just as good. Find the things that work for you and never think of a failure as a bad thing but rather as having gained knowledge of what doesn’t work.

Adam: That’s some really great advice, couldn’t have said it any better myself. And if you could go back in time to say something to your younger self, what would it be?

Alan: I’ve asked myself and been asked this question many, many times and every time I come up with something slightly more clever. But I think it boils down to the realization that having a disability isn’t just a reality that I have to and will continue to have to deal with every day. But rather, that it can offer you opportunities and ways to connect with people that I think people without disabilities can spend their whole lives looking for. And I think a big part of this, that may not be immediately apparent, is that by not recognizing that earlier, I always was less self-assured and really struggled with self-confidence as an adolescence which has translated into the way I speak and present myself as an adult in contrast to the way I think.

Adam: I really agree with your sentiment that “the world is your oyster.” Thank you so much, Alan! Is there anything you want to say before you go?

Alan: And thank you again for having me, Adam, I really appreciate the opportunity to voice some of my opinions and experiences. I do think the idea of this blog is great and I look forward to reading some of your other pieces.

Adam: That really means a lot to me, thank you so much, Alan. And thanks again for sharing your perspective and telling us a little bit about aniridia. It’s been a pleasure speaking with you!

Alan: To you as well.

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