Interview series with patients and families affected by Albinism
How old were you when you were diagnosed with Albinism?
Young, my early years, around 1 or 2. Although I think they suspected sooner.
What is your most recently measured vision?
I am not sure of the exact prescription however I know I have 6/36 (the equivalent of 20/120 for us non-metric people) which equates to being able to see something at 6 meters away which an able-sighted person can see 36 meters away. Basically 6 times worse. I do know that they do not make contacts with the strength of my prescription.
At what age do you remember being aware that you had Albinism?
I’d say probably during secondary school. The Nystagmus was more noticeable and I knew about this condition sooner. Luckily my Albinism is only ocular and isn’t too noticeable (mostly noticeable through excessive squinting and impressive red-eye in photos!)
How did Albinism affect you in school?
The earliest I can remember was being taught to touch-type in primary. During secondary school I was offered many low-vision aids, many of which I refused due to not wanting to be too different to my peers. I tried a portable keyboard with built in screen for a year or two (no iPads then!) which was very bulky, old and cumbersome to use in class. I refused all aids apart from extra time for exams. My friends would help me write any objectives on the board and once I had my text book I could just about read the small print. Basically I made it through school due to having very good friends, a stubborn attitude and some helpful and understanding teachers.
Were special accommodations made for you in the classroom? If so what?
I was always asked to sit at the front, despite the fact that even at the front I couldn’t see the board. After many heated arguments with teachers they soon let me sit next to friends. I did not have a 1-to-1 helper. As mentioned before I was given a portable keyboard due to my writing being slow and this helped. Other than that I generally used the same equipment. However I remember in Math my worksheets and tests were enlarged as decimal points and small fractions were a problem.
Have you found that others treated you different because you have Albinism?
Throughout secondary school I would get occasional comments but I had a good selection of friends and a sharp sense of humor. This helped me to combat any bullying and I didn’t really suffer from it during my schooling. Again during day-to-day life my Albinism isn’t largely noticeable unless you looked directly into my eyes.
Did Albinism affect your career choice?
Definitely. My first career choice was the police which obviously wouldn’t have worked out. I struggled on a career to choose during college. Whilst at college I had two jobs, one at a cafe and one at a cinema. These presented their own set of challenges which I had to overcome. The cafe had a very old till which had small faded labels on. I couldn’t see this so had to memorize the entire layout and prices. When I was doing waiting duties I would be given a food order to deliver to a certain table number, the problem was the table numbers weren’t fixed. Each customer was given a small number card to place on their table. I couldn’t see this. I would have to walk around the tables with the order until I either noticed the card or the customers motioned for me to come over. Sometimes this was embarrassing but I got on with it! The cinema job had similar problems with the till, however this was multiplied with having to use the ticket booking computer, which had small very numerical codes for the screens, dates, times and prices. A lot of squinting and mistakes happened here. Luckily my boss was understanding and would tolerate the occasional mis-booking. After these two jobs, towards the end of my college education I finally settled on teaching, specifically Primary Teaching. This caused me great worry as I wondered how I would see the class, manage behavior and mark work. After 4 years of training and 1 year in work however I can say the impact is minimal, as I control the text size on the board and displays, I can see the children well and I can mark the books as close to my face as I like! The only real drawback is I am unable to drive which limits distance.
Are you able to drive?
I was told I would be unable to drive at 14 from the local optician. This caused great upset to me and, surprisingly, my dad, who had bought a custom license plate for me and I guess was looking forward to teaching me to drive. Not being able to drive really hurt during college when all my friends were learning. I really felt left out and I am occasionally bitter about it today, especially when waiting for a bus in a blizzard. I am provided with a bus pass so during non-peak times I can travel on busses for free, however they don’t seem to understand that if I can’t see well enough to drive, how can I see well enough to read a bus timetable or see the bus number…
Do you wear glasses and does it help?
I have worn glasses since I can remember, starting at a very young age. They correct my vision slightly. Recently I got my first pair of varifocals (similar to no line bifocals, they gradually change power from top to bottom) which scared me, I don’t want my eyesight to deteriorate! They are not the best glasses to wear for day to day use but are necessary now that I can’t focus as well. My glasses are a large magnification and this is very apparent to people. It also makes it even easier to spot my Nystagmus.
What type of doctor do you see? Specialist? GP?
When I was younger I saw a specialist optician, probably up until the age of around 10. However now I see a regular GP and visit a mainstream optician.