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Don't Call This Rebel On Wheels An 'Angel From Above'

Maryangel Garcia Ramos, 32, is a disability activist from Mexico.
Antonio Escobar
Maryangel Garcia Ramos, 32, is a disability activist from Mexico.

Maryangel Garcia Ramos wears silver glitter eye shadow. She once raised hell at a Killers concert because the venue wouldn't let her rock out with her wheelchair in front of the stage. And she wants you to know that yes, people with disabilities dohave sex.

That was one of the points she made at South by Southwest, the annual technology, film and music conference in Austin, Texas this past week. The 32-year-old from Monterrey, Mexico, was part of a panel discussion on Sex, Beauty and Women with Disabilities. The aim was to break stereotypes about women with disabilities.

She also attended events. At a panel on women and television, she called out the panelists – which included the president of Paramount and executives from Warner Bros. — in the Q&A portion for not including people with disabilities on their TV shows.

Garcia Ramos has been using a wheelchair since she was 14 due to a neurological disorder that damaged her spine. The founder of a nonprofit called Mexican Women With Disabilities, she advocates for policy and legislation that advance rights for women with disabilities. In 2017, she represented Mexico at the U.N. Convention on the Rights of Persons with Disabilities.

We spoke to her at the Austin Convention Center.

What is your disability?

I've had a disability for half of my life. It was not an accident. It was a neurological condition [that affects the spine] called Foix-Alajouanine. It was not genetic. It just happened. I ended up not being able to walk when I was 14 or 15. After that I started using a wheelchair. It was a complete change in my life not only for me but also for my family.

How did you get to where you are today?

I am not the average person with a disability in Mexico or Latin America. I've always been in a position of privilege compared with most women in this world. I've had a strong family for support, running water, electricity, a roof over my head, education, technology.

What are some of the challenges that women with disabilities face in Mexico?

Access to health care. My dad worked as a director of a bank and his insurance covered all my surgeries. But if someone [less privileged] had a situation like mine, their access to public health and physical therapy would have been limited. They probably wouldn't have had personalized, steady health care. In rural communities, it's superhard for them to get to cities where the big health centers are.

Access to education. You need transportation to go to a school that is accessible for people with disabilities. Then how do you prepare the teachers to make sure they're actually giving the same knowledge and opportunities to students with disabilities?

What's the biggest misunderstanding you see about disabilities?

The conception of what disability is. People instantly think that a person [with disabilities] is broken or missing something — that as humans we are not complete.

We [also] want to challenge stereotypes. People think that those with disabilities are super loyal, or that we are kind angels sent from above, sent to Earth to inspire you. We want people to understand that we are all different.

How do we make people with disabilities more visible in the public arena?

When talking about diversity, we often refer to race, socioeconomic background or people who are LGBT. But we don't make an emphasis on people with disabilities.

And how do you do that?

Representation is very important. How is that we rarely see a woman with a disability on the cover of a magazine? Or giving the news on TV? Or in pop culture? Or in media? What we see is what we can be.

Your panel was about sex, beauty and disabilities. What does sex have to do with it?

People think that those with disabilities are not sexual beings. People think that there's only one way to have sex and if you can't do that, then you're not having sex. And because we're not seen as sexual beings, we're not getting sexual education.

What's the most fascinating panel you've seen at SXSW so far?

Just now, I came from a panel on the future of human ability. Bionics. The enhancement of humans itself in any way is amazing.

What are you working on with your nonprofit Mexican Women With Disabilities?

We want every state in Mexico to have at least one woman leader with a disability. There are 32 states and right now we have leaders [with a disability] in eight.

They will help us reach our three objectives: push policymakers to create laws [that create more opportunities in education and the workforce for people with disabilities] see more representation of women with disabilities in the media and get data.

There have been no new numbers about disability in Mexico since 2010. To create policy we need information. How many were born with a disability? Where do they live? What is their education?

Are there any challenges faced by women with disabilities that are unique to Mexico?

The violent situation in Mexico. We've had femicides — killing women for the sake of their gender. High rates of rape and violence. [Women with disabilities] are in vulnerable positions. We're a target.

We want to work with groups in the Mexican women's movement to help women with disabilities defend themselves and understand their sexual rights.

The machismo that is ingrained in Mexican and Latin American culture adds an extra layer of complexity to the work we do. Women are not supposed to be better than men at work or in leadership. [It's worse] if you have a disability. [Men think], "poor you, you're not can't do this because you're not able to."

What's the most frustrating part of your work?

When decision-makers don't include us when making public policy. In the disabilities community there is a saying: "Nothing about us without us."

In our state in the last administration, the government's inclusion project was to give people with disabilities a card with $40. They said that 25,000 people were impacted. No they weren't. They just gave us a card that bought us food. You're not giving us education or jobs. You're not sitting with us and asking us what we need.

Copyright 2021 NPR. To see more, visit https://www.npr.org.

Malaka Gharib is the deputy editor and digital strategist on NPR's global health and development team. She covers topics such as the refugee crisis, gender equality and women's health. Her work as part of NPR's reporting teams has been recognized with two Gracie Awards: in 2019 for How To Raise A Human, a series on global parenting, and in 2015 for #15Girls, a series that profiled teen girls around the world.