Toronto woman with sight loss challenges misconceptions as part of Albinism Awareness Day

6/13/2017

head shot.jpgTina Sarkar-Thompson was born with Oculocutaneous Albinism, a congenital disorder characterized by the complete or partial absence of pigment in the skin, hair and eyes, reduced visual acuity and nystagmus resulting in sight loss.

Sarkar-Thompson grew up in Brampton. She is of East Indian descent.  When she was young, she recalls feeling left out because everyone in her family looked different than she did.

"I didn't know exactly why I was different. I just knew that I was," says Sarkar-Thompson.

There was also the inevitable teasing she received as a child.

"I was called 'ghost' or 'invisible'," recalls Sarkar-Thompson. "Kids also made fun of the dark glasses I wore because of my sensitivity to light."

Sarkar-Thompson suggests technology has made it easier for kids who are different to "blend in" today compared to when she was younger.

"UV protective clothing means kids with albinism don’t need to worry about the heavy-duty sunscreen that can be messy and smelly," says Sarkar-Thompson. "The advent of smartphones means kids with sight loss can carry the same device as everyone else, instead of a bulky braille reader or audio player. It’s made things a little bit easier."

Sarkar-Thompson met her husband Jason Thompson, who also has albinism, when they both worked as camp counsellors at CNIB's SCORE (Skills, Confidence and Opportunities through Recreation and Education) program in 1998.

Together, they have a 5-year-old son, Xavier. Their unique family dynamic has led to a number of unpleasant interactions with people.

Owing to Sarkar-Thompson’s East Indian heritage, Xavie, who does not have albinism, does not look like his parents. On numerous occasions, they have been admonished for disciplining someone else’s child, as well as more serious cases of perceived abduction.

Sarkar-Thompson has also been surprised at how much advocating she and her husband have had to do for themselves.

"When you're a parent, you expect to have to advocate for your child, but I didn’t realize how much I had to do for us," says Sarkar-Thompson. "Xavie’s school would send home notes in small type or printed on oddly coloured paper that my husband and I could not read. The school has always been accepting of our requests and willing to help, but they don’t always know how initially."

Sarkar-Thompson has encountered a similar theme throughout her life. Even people who are open and willing to help, and be accommodating simply don’t know how.

"That is why today (Albinism Awareness Day) and other public education opportunities are important," says Sarkar-Thompson. "I have been fairly lucky in my career to interact with employers who have embraced accessibility. But, even those who are open to the idea can still be uncomfortable and unclear as to what to do."

Sarkar-Thompson currently works for CNIB as the Project Manager for Career Support Program Development. In this role, she's working towards increasing awareness and improving employment conditions for working-age people with sight loss.

To learn how you can employ someone with sight loss, visit cnib.ca/employability.

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