What you don't see when you stare at me
- Posted on October 14, 2021
- Estimated reading time 4 minutes
Where should I start my story? I was born with a genetic condition called albinism. This condition is considered a rare disease that affects 1 of 17,000 people in the world. This condition affects the melanin producing process in different ways depending on the kind of albinism you have, and the genes affected. In my case it affects my skin, my hair, and my eyes.
My hair is almost completely white, my skin is very light, I never get tanned, and sun burns it very quickly. But the biggest impact from this condition is what people can’t see. People with albinism have a severe visual impairment. Most of us have a vision acuity under a 10%, a very strong photophobia and no binocular vision, so we don’t see in three dimensions. Not only I was not aware of that, but my parents, teachers, and doctors didn’t know either.
I began to suspect something was different when I arrived to school and was surrounded by many other kids staring at me and trying to touch my hair. It was only the beginning. I had to learn in an educational system that was not ready to manage “the difference.” Besides my different appearance, my visual disability was not obvious. I was not able to see blackboards even from the first row and it was hard for me to color inside the lines or read books with small fonts or writing over the pictures. I was not able to play some games or to do some sports like ball sports or even run without bumping or tripping on everything.
So, little by little I convinced myself that I was too clumsy and many others, like teachers, thought I was clumsy and lazy. I was quite isolated and felt completely alone and unsupported. To my classmates, I was like a piece of furniture in the classroom or at least that was what I felt like. I hated that and most of the times I hated myself.
As a teenager, I began to study using magnifiers and handwriting the contents of my books in big letters to study… The process was slow but as I had a good head, I learned fast. Besides I had plenty of time as I had no social life! At least I could change the way my teachers looked at me, except in physical education. Things began to improve, and I left school with very good marks.
I began to study telecommunications engineering. After my first year at the Engineer School, I was about to quit. It was impossible for me to follow the classes with those acetate transparencies, giant blackboards or using the computers. Then, one of my aunts told me and my sister, who is also albino, to go to ONCE (Organización Nacional de Ciegos Españoles), which is an organization for blind people in Spain, and look for help. We knew we had visual problems, but we didn’t know we were legally blind. So, we had access to many technical visual help tools and learn to manage many situations.
Once you have a paper that says you have a disability, things change, not for yourself because you’ve always have been the same person and have the same abilities… But many people become experts in telling you specially what you can’t do.
So, at first as a child I was clumsy and lazy, and suddenly at 19 years old, I was classified as a poor useless being. But I was not willing to accept that!
Job interviews have been in general an interesting adventure. Even being blind, on many occasions, you can feel the ice when you enter a room, and you know you’re out. After you get the job, on many occasions some people make you feel like you have to prove you are worth it. You have to put up with condescending or patronizing comments, doubting looks and prejudices on what you can or can’t do. It feels like everyone assumes you can’t do what needs to be done
I know that most people are well intentioned and don’t even realize they’re doing this – before assuming something about someone’s disability, I encourage everyone to ask questions. And to those with a disability, it sometimes helps to break the ice and encourage those questions with humor. One I like to use: “If you want to ask me any questions, I promise I won’t bite!”
I first heard of Avanade through some mates I had been working with in my last job. At first, I was quite worried just trying to get a new job. I had just quit my last employer because of a change in the working conditions and I was feeling quite insecure. During the recruiting process, I had several interviews, and everybody was so nice it made me wonder if the decision had already been made.
I’ve learnt a lot since my first interviews and my first clients, but when I got into Avanade, I was a little afraid of navigating a whole new workplace. New people, new office, new clients. First thing I had to do was completing all the courses to learn about Avanade’s values, policies and ways of working, and this information made me feel completely supported by Avanade. There was infrastructure in place in case I faced bias or condescension because of my disability.
At Avanade we have a disability inclusion employee network called DiversAbility; the network aims to destigmatize and normalize the conversation around disability in the workplace as well as to shift mindsets so that people with disabilities are viewed as a talent pool to make our organisation more successful. By sharing stories like mine, we hope everyone will see how disabilities don’t have to stop us from having a successful career and how different perspectives around the table make us a more inclusive, innovative and accessible organization.