Youth Space Spotlight: Stephen

January 17th, 2014 by FFB Canada

1. Can you share with us what retinal eye disease you have and when you were diagnosed?

I suffer from Retinitis Pigmentosa. I have roughly five degrees of peripheral vision but my central vision remains in good shape (I can read without relying on any visual aids). I was diagnosed when I was in Grade 2, but I think my parents suspected I had RP earlier than that – it runs on my mom’s side of the family and so they were looking out for signs.

2. Did vision loss have any impact on your education choices?

I had some very frustrating experiences in science labs in junior high and high school. I knew that pursuing further studies in science would have meant more lab work at the university level and so never really considered pursuing further studies in science. My decision to go to law school was based in part on an awareness that the law would be a profession in which I could excel even if I did one day end up losing the remainder of my sight.

3. Can you share with us how vision loss has impacted your relationships?

I often make a terrible first impression on people. I sometimes don’t make proper eye contact or might stumble around in a way that is confusing to a sighted person. This is especially true of my immediate neighbourhood, where I often do not use my white cane, since I’m very familiar with the surroundings. The lost chance at a first impression is not usually fatal, but it can be an annoying step to go through.

I try to explain to people upfront the general gist of my eye condition and to encourage them to ask questions and that I’ll ask if I need assistance. Learning to communicate this information effectively without making too big of a deal out of it (I don’t want my vision loss to define me in my relationships) has been one of the trickiest parts of growing up and is a skill I’m still refining.

4. It’s no secret that vision loss can lead to anxiety and depression. How do you maintain emotional balance?

I have a strong network of friends and family that I rely on to keep me in good spirits. I try to remember that everyone faces challenges in their lives and that there are positive aspects of everything. Learning to cope with the physical limitations of the body is something that everyone has to deal with sooner or later. People with genetic disabilities just get a head start on learning to deal with them!

5. What accessibility aids can you not live without?

My white cane has been a lifesaver ever since I finally started using it last year, after years of nagging from family and friends. The cane is an amazing tool for negotiating physical obstacles and social environments. People are much nicer when I bang into them now and airport security guards are much less sharp.

GPS location on my phone has also been an amazing development. I used to have to ask people to meet me at street corners, now I can usually manoeuver my way to being right in front of their house in the dark. It means no more desperate searching for street signs which might not even be there. It has also made navigating public transit much easier through Google Maps.

6. Our 2012 Toronto Vision Quest Youth Panel agreed that we all ‘hate’ 3D movies, revolving doors and garbage days. What’s your pet peeve?

Elevator buttons – elevators are too dark to see. Sometimes they have braille, but by the time you find the braille, someone on a different floor might have pushed a button, so then you end up on a journey to the wrong floor. Once the braille was even upside down, so that didn’t help much!

When people grab my white cane instead of the metal pole in the subway or streetcar – I’m supposed to be the visually disabled one!

7. If you could go back in time and talk to your younger self about vision loss, what would you say?

For a long time I struggled with denial about my eye condition. I would think to myself that it couldn’t really be as bad as the tests said and that it was just a minor inconvenience. That mindset prevented me from communicating effectively about my needs. I would hide the fact that I was visually impaired from someone until it was absolutely necessary that I divulge that information.  I wish I could go back in time to my younger self to own up to my physical limitations and accept them as the best way to move beyond vision loss.

More from Stephen

Law was always a topic of discussion at the dinner table in my family. My father and his father both pursued careers in the law and so I was exposed to debates about legal issues from an early age. I was very lucky to have had the chance to work for several summers in high school as a secretary at my father’s law firm in St. John’s, NL. Having that early experience gave me a sense of what a legal career could be. I was inspired by these experiences to want to be able to understand the legal structures that govern modern life.

I was born with Retinitis Pigmentosa and while I currently have good central vision, I’ve always been aware of the need to prepare for the possibility that I might some day lose the remainder of my sight. Law was attractive to me as a field that relies heavily on brainpower. The example set by other blind lawyers demonstrated to me that blindness was not an obstacle to a successful career  in the law.

I have just completed my second law degree and have thoroughly enjoyed my exposure to the intellectual puzzles and social challenges which the law presents and look forward to learning more as my career takes shape.