'The worst thing you could do is stare:' Raising awareness about vitiligo

Model and public speaker Aiesha Robinson tells Daybreak's Shari Okeke how her life changed when her black skin started to turn white.

27-year-old Aiesha Robinson says don't stare, smile when you see someone with vitiligo

Aiesha Robinson was devastated when she was diagnosed with vitiligo nine years ago but now works as a model and runs a non-profit organization, spreading awareness about the disease. (Shari Okeke/CBC)

Aiesha Robinson stands tall and proud as she speaks about her life as a model and founder of a non-profit organization that raises awareness about vitiligo, a disease that causes skin to lose its pigment.

It's a stark contrast from the state she was in when she was diagnosed nine years ago after a small patch of skin on her thumb turned white.

"I dropped to the floor and I started bawling," she said.

She was 18 years old at the time and hanging out with people who "preferred to date women with a lighter complexion."

"I was not good enough because I was dark skinned and now I'm not good enough because I have vitiligo," Robinson recalled thinking at the time.

Too much pain

As the white patches of skin spread, covering much of her hands, people started to stare, whisper and point.

Although her parents and friends were supportive, Robinson felt no one understood and she became convinced nobody would be able to love her. 

Her school grades began to suffer and she was so stressed that she avoided leaving the house, preferring to hide in her bedroom under the covers.

"I did actually contemplate suicide," she said.

"It's not that I wanted to actually go through with it, it was more that I wanted to get rid of the pain I was feeling," she said.

Turning a negative into a positive

Robinson had an epiphany after eventually confiding in her older brother about three years ago.

"He just said that 'listen, it seems like it's a negative situation but you need to turn it into a positive. What can you do to take control of your life? Because right now it's controlling you,'" she said. 

After that, her perspective changed.

"When people judge me it's out of ignorance," she said.

Aiesha Robinson, founded Born to Rise, a non-profit organization that spreads awareness about vitiligo and she runs a support group for Montrealers living with vitiligo. (Shari Okeke/CBC)

"So I took it upon myself and decided it was my responsibility to let others know what [vitiligo] is and ... how they make me feel when they stare at me," she said.

Since then she's become a public speaker raising awareness about vitiligo in English-language schools. She's concerned, she said, about children "who will be constantly bullied."

More recently she's connected with the mother of a 10-year-old with vitiligo who attends a French-language school and is now determined to help that woman's child.
"I told her I'd go and I'll work on my French ... and I'll be a representative for her because she's being bullied to the point she had to switch schools," Robinson said.

Smile, don't stare

Robinson has a central message she wants to share: do not stare at people with vitiligo.

"That's the worst thing you could do is stare at somebody or give them a look of disgust," she said.

Instead, she says, smile in a way that says "we accept you."

Also, when people approach and say "'I notice you have vitiligo and I just want to say you're gorgeous' that just boosts my self esteem that much more," she said. 

Canadian model Winnie Harlow has also sought to raise awareness about vitiligo. (Mark Blinch/Reuters)

Building support

Robinson has also started a vitiligo support group that meets once a month. Its members are adults who are anglophones.

Now that she's made a connection with a francophone parent of a child with vitiligo, she's hoping they can team up to build a bilingual support group.

She's also working on more ideas for supporting children.

"I'm looking to start an after-school program for empowerment of the youth, teaching them the lessons I wish I learned at their age, which is that we are the creators of our own destiny and we are the ring-leaders of our own happiness," she said. 

Born to Rise

Robinson is also busy planning her third annual Born to Rise event, named after her non-profit organization.

The event, scheduled for April, brings together several Montrealers who tell their personal stories about overcoming obstacles. 

Last year 450 people attended the event and the goal is to attract an even larger audience this year, Robinson said.

In addition to her work raising awareness about vitiligo, Robinson has also landed some modeling gigs. She sees that too as a way of representing the vitiligo community

"I just think it's a great opportunity to spread a great message, that it doesn't matter what you look like, dreams do come true and don't limit yourself because of the way you look," she said.  

Finding love

Robinson says she no longer worries that nobody will love her because she realizes the problem was that she did not love herself.

She has yet to have a relationship but is now confident it will happen, when the time is right.

"I'm getting my career started and I feel I'll be a passionate lover so I need to get myself organized before I'm in a relationship because I'll probably be head over heels," she said.

Listen to Shari Okeke tell Aiesha Robinson's story on Daybreak: 

About the Author

Shari Okeke is writer/broadcaster for Daybreak on CBC Radio, and creator of Mic Drop, an award-winning CBC original podcast.