Chronic Illness

Making Modeling More Inclusive Of Disability, One Brand At A Time

Born with spina bifida, Tatiana A. Lee is fighting for the representation of disabled people by working with Apple, Netflix, and more.

In an industry notorious for placing high standards on physical perfection, Tatiana A. Lee is a model and activist blazing a trail for people of color with disabilities. Living out loud with Spina Bifida, Lee has gone on to be featured in major media campaigns with the likes of Apple and Target. But, Lee’s true work rests in activism and her ongoing mission to fight for the representation of disabled people in Hollywood. As a consultant for major studios, such as Netflix, through Respectability, Lee is ensuring that the disability community is fairly represented both in front and behind the camera. 

What was it like growing up with Spina Bifida?

I spent a lot of my childhood being picked on. When I was a kid, people on the street would say, “what’s wrong with you?” I didn’t know that I was different until people pointed it out to me. On top of Spina Bifida, I had learning disabilities including ADHD, Dyslexia, Dyscalculia, and Bi-Polar Depression. When I was in 10th grade, during an Individualized Education Plan meeting — which most disabled students receive to guide them through their education — my mom was told my best option was to drop out of school. I ended up getting my GED and from there, went to community college and majored in business marketing with the goal of interjecting disability into pop culture norms. I was also trying to break into modeling, but as soon as a photographer realized I had a disability, they wouldn’t want to photograph me. That was heartbreaking for me; people weren’t accepting me as I am. 

When I was a kid, people on the street would say, “what’s wrong with you?” I didn’t know that I was different until people pointed it out to me.

You have called yourself an “accidental activist” because of an eyebrow appointment that inadvertently kicked off your activism journey. Tell us about that moment.

When I came to Los Angeles, I would try and attend networking events only to find that they weren’t wheelchair accessible. I started writing about it and created my blog, Accessible Hollywood. There’s a famous eyebrow stylist here in Los Angeles who caters to celebrities. When I called to book an appointment, they didn’t give me any options to accommodate my wheelchair and instead hung up. I blogged about how people with disabilities deserve to have “fab brows” too. The stylist happened to see the story and emailed me to say I was right and that she needed to do better.

After that, the studio added a call-out on their website offering accommodations to people with disabilities. That was the impact I wanted to have with Accessible Hollywood, I wanted people to make space to include people like myself. 

Growing up,
Photo: Tatiana A. Lee

You have been vocal about “Ugly Laws” and their impact on people with disabilities. What are ‘Ugly Laws’ and can you tell us how you were impacted by them?

In the 1960s and 70s, in cities like Chicago, if you were a person with a disability and out in public you would be fined. These laws outlawed the appearance of people who were “diseased, maimed, mutilated, or in any way deformed” out in public. From there, a lot of the stigmas and stereotypes facing the disability community still exist today. 

When the Ugly Laws existed, it was the height of institutions because people with disabilities were seen as defective and unable to contribute to society. When I was born, the doctors suggested to my mom that they institutionalize me because they didn’t think I would have any quality of life. 

The infrastructure of society isn’t adapted to us — the Americans with Disabilities Act only came into effect in 1990 – there are still places that do not curb cut or buildings that are not wheelchair accessible. People with disabilities are essentially invisible to the rest of society and that’s why we continue to be left out of every conversation. 

How can both the disabled and non-disabled communities become better allies?

Support people that are different from your own. Even in the disability conversation, people of color are left out.

Support people that are different from your own. Even in the disability conversation, people of color are left out. Also, having the opportunity to highlight and lift the voices of people of color with disabilities and include them in all conversations. Giving them opportunities to use their voice, their platforms, and to spread their message in a way that’s impactful for them. I still have yet to find a space where I feel fully included and where I can be myself. In disability spaces, I’ve experienced racism. In spaces that are made for people of color, I’ve dealt with ableism. The only place where I feel fully accepted is when I am within a community that understands the experience of being both black and disabled.

What are the unique challenges that PoC with disabilities experience that people might not expect?

Disability and the way it’s viewed is rooted in white supremacy. If you think about slavery, people of color were valued for their physical capabilities. Our whole society has put too much emphasis on physical capabilities, and I think that’s even more prevalent in communities of color. Being a person of color, you already have to prove yourself to your white counterparts for a job, education, career, and everything else. When you add a layer of disability, you have to not only prove that you’re worthy because of your race, but that you’re worthy because of your disability. 

Not only that, but forty to fifty percent of black people who’ve been killed by police are also disabled, including Sandra Bland who had epilepsy and depression, as well as Elijah McClain who had autism. Under the Americans with Disabilities Act, mental health-related issues are considered a disability. In stories about black people who were killed by police, it will often say they had a mental illness. I feel the Black Lives Matter movement is doing a disservice by not saying these people were disabled. 

It’s a lack of understanding, in which the media plays a huge part. If you were to see a young black adult with a disability on TV having a job and getting a college education, it would shift people’s perspective of what it means to hire you, work with you, and be empathetic.

Image: Tatiana A. Lee

Tell me about how you first became a model and an actress? 

At 7-years-old, my mom bought me a Polaroid camera for my birthday. I organized a photo shoot in my yard and knew then that I wanted to work in front of the camera. I used to tell people that I wanted to be a model and actress, and people would tell me that is something I couldn’t do. Since no one wanted to take me seriously, one of my best friends would take photos of me. 

I started to grow on social media, putting out photos showing that you could be a model in a wheelchair who is also a woman of color. From there, I had gotten the attention of Apple. They said they loved my photos and would be doing a campaign that featured how people with disabilities use technology in their daily lives. They signed me and I ended up modeling for their accessibility site. That was my very first paid modeling opportunity. 

hoot in my yard and knew then that I wanted to work in front of the camera. I used to tell people that I wanted to be a model and actress, and people would tell me that is something I couldn’t do.

I’ve since been featured in a commercial for Target, a campaign for Zappos, and I’m the first woman of color with a visible disability to be featured in an international campaign for Parfait Lingerie. That campaign was two years ago and people are still sharing photos from it. To see a black woman in a wheelchair who is proud and loving her body, I’ve since seen many disabled women proudly sharing their own photos.

How do you feel Hollywood is doing in terms of its portrayals of people with disabilities in both film and television? 

They’ll often have someone without a disability portray having a disability. We, in the disability community, see that as a form of “blackface” because you’re allowing someone who does not have the life experience of having a disability to portray a disability. It takes away opportunities from people, such as myself, who have dedicated their life and career to honing their craft as an actor but can’t even get into the room to audition. They need to let people with disabilities tell their own stories. They need to look for, search for, and hire disabled writers, directors, and producers because it’s just as important to have people with disabilities behind the camera. 

For people with disabilities aspiring to break into Hollywood, what is your advice to them?

Know your worth. Be proud of who you are.

Know your worth. Be proud of who you are. Learn how to speak up. It is not for the faint of heart. I’m still struggling with opportunities. I’m still struggling with getting acting jobs. In Hollywood, we are just scratching the surface of them accepting white people with disabilities, let along people of color with disabilities. My advice is to have thick skin. Don’t take no for an answer, advocate for yourself, and always tell your own story.