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TESS BALLIS

- in conversation with Standing Voice -

By Standing Voice

Tess Ballis is an inspiring eighteen-year-old from Chicago, USA. Diagnosed with albinism at three months of age, Tess has refused to let her condition hold her back. Part of her school’s model UN and Student Board President for Vision For Tomorrow—a charitable foundation co-founded by her parents to inform and empower those with low vision—Tess has already achieved more than many people twice her age.

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"There have definitely been some defining moments of sadness in my journey to understanding. The first time I learnt about the violence occurring against people with albinism in other parts of the world I was only 8 years old. I felt a lot of fear. Previously, I had only thought about albinism as a low vision issue, but there were people being affected on a completely different level."

Growing up, Tess—like so many people with albinism—experienced name-calling from her peers and a lack of understanding around her condition.

"I remember a time I was at a Halloween party and a boy was wearing red contacts. Everyone began to laugh, saying he looked like an albino. None of them had connected the dots that their friend Tess had this very condition. On my first day of middle school, I walked into an honors class and I overheard someone whisper 'why is she in this class, I thought she was disabled?' I felt like an outsider."

TESS BALLIS

Even Tess’ teachers and doctors had little knowledge of albinism. Some made assumptions about her intellectual capabilities.

"I’ve had teachers speak to me in very slow voices, as if I didn’t understand what they were saying. Because albinism is labelled as a disability and affects my vision, they assume it affects my intelligence. Although someone with albinism might need visual accommodations to perform to their full potential, it does not mean albinism is an intellectual disability. Even some of my first optometrists did not understand the condition and sent me home on the assumption that it ‘could be nothing.’"

Photo credit: Tess Ballis

Photo credit: Tess Ballis

Photo Credit: Tess Ballis

However, these moments have only motivated Tess further to pursue a career in human rights. Even at this young age, she is determined to provide a voice to people who have suffered discrimination in their communities.

"I have a passion for human rights. I have always been interested in learning about groups of people who have been ostracized or victimized and tried to help in any way I can. But I do have a particular sensitivity where albinism is concerned. There is a tendency for people with albinism to be placed on a pedestal, as if we are inhuman. But we are just the same as anyone else. That’s probably a very simple concept but I have witnessed so much lack of understanding; from inaccurate portrayals in the press to movies depicting us as circus freaks."

Following her discovery of the challenges facing people with albinism in Africa, Tess began searching for ways to help. She soon found Standing Voice, and has since become an ambassador for our work internationally, as well as raising invaluable funds and awareness across multiple campaigns.

"The more I read about this issue, the more I feel horrified and ashamed. Despite problems with my vision, I live a happy life with my family and friends. But there are people in this world living through horrors I can’t even imagine. When I decided to look into ways I could help, Standing Voice stood out to me immediately. So many websites speak about people with my condition in a condescending or derogatory way, but Standing Voice was different. It was immediately clear to me how passionate their team is, and how motivated they are to empower people with albinism."

In 2018, Tess gave the keynote speech at the Skin Cancer Foundation of South Africa Annual Summit.

"I just want people to realize we—as people with albinism—have a genetic condition. It affects our hair, our skin and our eyes, but that is the only difference. We are human beings, the same as anyone else."

TESS BALLIS

This year, Tess' advocacy climbed to even greater heights when she gave a TEDx Talk about her experience growing up as a person with albinism and gaining strength through discovering what makes her, and everyone else, a unique human being.

"My greatest wish for those who continue to perpetuate hatred is that they find their humanity. Because I have sure found mine. I have faith in my humanity. Now I want to empower others to spread this message."

TESS BALLIS

Once she graduates, Tess will be attending Northwestern University to continue her activism for the rights of people with albinism through human rights law.

We can't wait to see where she goes next.

"I'm going to keep using my voice until the world no longer needs to be reminded that all human beings are human beings"

Footnotes

All photos credited to Tess Ballis

FootNotes

All photos credited to Tess Ballis

© 2026 Standing Voice

A Heartfelt Thank You

Bonface Massah

March 8^th, 2022

In conversation with Standing Voice

CHRISTINA AND HAMIDU

The Singers

THE ENTREPRENEUR

- Neema -

SUPPORTING SURVIVORS

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