Ableism, racism, and advocacy: perspectives from a disabled latina advocate

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For today’s blog we are going to hear from Bethany, who is a disabled Latina babe and advocate. She eloquently shares her perspectives on ableism, racism, activism, and disabled bodies matter.

My name is Bethany and I am a 21 year old disabled rare disease patient. I run an Instagram advocating for others like me, @Rebellious_Story, and I love to educate people about rare diseases and how they impact my life. I am currently diagnosed with Ehlers Danlos Syndrome, mast cell disease, gastroparesis, spine instability and injury, and severe dysautonomia. I am dependent on a wheelchair and a feeding tube, as well as regular IV infusions. There’s a bunch of other things wrong with me that we’re just now figuring out or just don’t feel relevant to mention, but suffice it to say that I am just one hot mess.

Although disability is a big part of my identity, so is my culture. My mother immigrated from El Salvador to America when she was 12 years old, and as such I was raised in the same traditions and values of her culture. I also, obviously, have that Hispanic DNA, and while the color of my skin has lightened since falling ill I still maintain that classic Hispanic curvy body type and I am definitely not privileged enough to have never experienced racism.

Being both disabled, female, and Hispanic leaves me at an intersection. I am a minority on multiple accounts and that does not go unnoticed by most of the population. Finding people like me in the media is impossible, and finding people who have no stereotyped beliefs towards one of my identities is nearly just as impossible. That’s why I do everything I can to represent my communities and help other people feel like they have someone they can look to who is like them.

 

What are your general thoughts on ableism and any examples of ableism you have experienced.

 

Obviously I despise ableism, but I’m not altogether surprised that it exists. We live in a culture where disabled people are constantly spoken about as if we are lesser humans due to our limitations. People assume that disabled people don’t contribute to society and because of that false belief they equally assume that there is no worth in helping us. Whenever disability is put in the spotlight it is notoriously turned into a joke or some sort of inspiration for healthy people. Very rarely is disability every portrayed in the light that we prefer; just another person living with a few extra physical challenges. So what do we expect in a culture intent on erasing us from every aspect of their world and only remembering us when they need a good laugh or kick in the butt?

I’ve experienced so much ableism that it’s tough to pick one. When I first became wheelchair dependent it didn’t take long to be called a “cripple” or at one point “a handicap,” these terms were used to separate me from my disability. I have requested accessibility countless times, only to be denied and therefore unable to attend an event. I’ve had people crop my wheelchair out of photos, even though it made the picture look extremely terrible. I’ve had countless people grab my wheelchair and start pushing me without warning or permission, sometimes resulting in injuries due to the nature of my condition.

Far too often my main experience with ableism has been a drastic lack of respect for my boundaries and rights as a human being. Before my disability was inherently visible, people were much more respectful of me and less likely to do something obviously demeaning, but since becoming wheelchair dependent I find that I am either treated like a child or an object.

 

What is something you wish the world knew more about in terms of ableism / disability discrimination.

As cheesy as it sounds, I just wish people understood that we are not like the disabled people out see on TV or in those “inspirational” videos all over Facebook. We are humans just like everybody else. Multifaceted human beings capable of just as much emotion, beauty, and intelligence, as anybody else, and yes, that includes nonverbal persons with disabilities or children. The small amount of representation that disabled people get in the media is not adequate enough to show all sides to our story, and is frequently extremely inaccurate. These pervasive images and stories are taught to children from a young age and toted as “disability representation” far before someone is likely to meet or make friends with a disabled person. To add to this cycle, a lot of people just straight up won’t make friends with a disabled person because their knowledge of us is limited, scary, and incorrect.

So I just want people to know that they can’t know us from a quick google search about our condition or a few re-watches of The Fault In Our Stars. Disability is as different as hair color, personality, style, and race. Making assumptions about us won’t do you any good, as you will quickly learn that most of them are wrong. So instead of assuming that you know us, just ask. It’s much better than awkwardly staring across the room or running away cause you think you can “catch” my disease.

 

What do you identify more with? Being a POC or your disability?

This is a tough question because I can’t say that I prioritize one aspect of my identity over another. I feel like my disability probably affects me more on a daily basis, if only because I can avoid discrimination due to my race by staying home whereas my disability exists even in my private spaces. However, from an emotional side of things I have been a person of color my whole life, while I didn’t become disabled until I was in my teens.

With that in mind, I’d say I probably hold on more strongly to my cultural identity than my disability, because I have had more experience with it. While I am constantly learning something new about the disability community, I don’t often feel confused when it comes to Hispanic culture as it has been part of my life forever and I don’t know any different.

 

Do you think racism & ableism are equally oppressive, in your experience.

Okay. I feel like both of them are terrible and I don’t want to diminish anyone’s struggle, but having experienced both I kind of feel like ableism is more oppressive. The reason being that racism alone is attacking a person for their skin color, but that person is able-bodied and they may have both the energy and resources to fight back. However, a lot of us with disabilities are financially wrecked, with little to no independence. When we experience mistreatment, our options are very limited, and we often struggle to find the physical means to accomplish our retribution.

So what you end up with is a group of people who are simultaneously oppressed while also being limited in how they can fight that oppression. Now, there are obviously disabled People who are fighting for our rights every day and I am forever inspired by their perseverance and audacity, but when it comes down to it, someone with a severe and chronic disabling condition will find limitations to their activism. They will have more road blocks to overcome and more stigmas to fight, and some of them will be at an intersection of multiple minorities like being both disabled and a person of color. All of these factors stack up high against us and while they aren’t impossible to overcome they are a lot of work. Work that some of us just simply cannot accomplish for various reasons.

Additionally, I do feel like racism has been brought to the spotlight more and more in recent years and that really excites me. We are finally seeing people get consequences when they are racist and it is frowned upon to make racists comments in a lot of places now. That is a lot of progress! Obviously, there is still more progress to go. Trust me, I live in a very white town so I know we have a lot more work left to do on the racism front. But I will say that almost anybody in America knows the word “racism” but how many people have you had to explain the definition of “ableism” to?

A good example of this would be when I was younger, in my teenage years, and working my first job. I had just begun to experience some concerning symptoms mainly in my hands and at the time I worked at an hourly daycare center. My boss was white as were most of the employees and that didn’t go unnoticed between my sister and I, the only people of color working there. My sister would often get calls after work because the coworker she closed with blamed her for a problem with cash register or cleaning.

One day I was told by my boss that she wanted to talk to me. Around this same time I told one of my coworkers that my hands were having issues and I didn’t feel like it was safe for me to be picking up the little children to change diapers so that I would need someone else to pick them up for me. I was attempting to be responsible while respecting my boundaries. Around the same time, I also tried to trade one of my shifts with someone because it would’ve had me working until 11pm at night and I didn’t think I could stay up that late and still have the where with all to watch the children safely. Shortly after making these two requests I was abruptly fired from my job. My boss implied that I was faking my pain just to get out of doing extra work. She didn’t even give me a two week notice and I was heart broken.

Racism permeated that work place like crazy, but in the end it wasn’t the color of my skin that got me fired. It was my reasonable request for accommodations. People these days know that racism is too big of an issue to do it obviously, but every day disabled people are turned away from jobs or fired because of their physical limitations and people get away with it. Despite the fact that it is just as illegal.

 

How can we work to bring more attention to ableism?

I think the biggest thing we can do is to amplify the voices of disabled people. We need companies to start sharing our stories and embracing us as employees. I want more disabled models, actors, CEOs, even politicians! We need to show people that we exist and we are just as capable of contributing to the world as anybody else. We need representation in the media. Probably most of all we need those of us who can to speak up and use their voice to speak for those who can’t. That is why I am so passionate about sharing my story and thoughts online. I think the biggest step to counteracting ableism is for people to learn about disability from a disabled person’s point of view, not an able-bodied movie director in Hollywood. This can only be accomplished if we are willing to put ourselves out there and share our stories.

 

Do you think disabled bodies matter is taking away from BLM / what’re you’re thoughts on disabled bodies matter?

I honestly never would have put the two together on my own, and not just because only one of the words is similar. Both people of color and disabled people are marginalized groups and in situations like this I think it’s all about banding together. Disabled bodies matter in no way came across like it was trying to usurp the BLM movement. There definitely have been people who have tried to do that but if you’ll notice those types of movements tend to just switch out the first word and keep the rest, where was DBM only keeps the last word.

I don’t think it’s right for people of color to hold the monopoly on the word “matter” because, quite frankly, they didn’t invent that word. It’s free for public domain use, and YES a lot of things do matter and need to be spoken about. I feel like BLM was trying to make the point that people of color deserve to live and have rights just as well as anybody else, meanwhile the DBM movement is about loving and embracing the beauty that can be found in disabled bodies. It’s about feeling beautiful in your own skin. It is a body love movement, not a political agenda. There is a stark difference in my book.

Of course, I also love disabled bodies matter because I am all about self love, especially when you spend every waking day having to care for your body, and I am just as equally supportive of the black lives matter movement. They are two separate things in my mind, but both just as important as the other.

 

How can we help further awareness for disabled POC?

Get that Instagram algorithm to work for us tho, haha. In all seriousness, most of the “big” accounts in the disability community are from white disabled people. I think the contributing factor to this is just that we are trained to look for “ideal” bodies, even when we’re looking at disabled bodies. People want to follow the tall, white, skinny supermodel who needs a wheelchair sometimes, or the very ripped weight lifter who just happens to need a feeding tube. We are conditioned to look for perfection, even when viewing imperfect people. So people of color don’t get much attention, people with curves get blamed for their own illness, people who don’t speak perfect English aren’t followed closely. All of these factors don’t affect the eloquence or importance of that persons story, but they still lead to that person being drowned out by the millions of other accounts with more “appeal.”

I’d love to see big accounts signal boosting more people of color. I want our rare disease organizations to find colored people who live with the conditions to put on their websites. I want to stop receiving a bunch of DMs a day from people saying they have never seen another Hispanic person with curves and a feeding tube. I just want people to feel less alone and, in my opinion, the best way we can do that is by raising up accounts that are uniquely their own. Yes, everybody’s story is important, but we need to hear a diverse range of stories. Disabled people of color have completely different medical treatment and cultural aspects to their illnesses. These stories deserve to be shared. Without knowing, we have protected racist doctors by hushing the very people who actually need protection. Nobody is held accountable because stories of racism in medicine aren’t going to be posted on a “big” account. It’s high time that we change this.

 

Tying it all together

I’d just like to say that I am very honored to be given the chance to do this interview and share a small bit of my story and opinions. I obviously can’t speak for all people of color or all disabled people, but I am speaking from the heart, based on the things that I would like to see change. There is so much work to be done when it comes to both racism and ableism and I firmly believe that they go together very closely. I would love to see more accounts put forth effort to counteract these problems and genuinely try to change the way we view disabled people of color. For those accounts that are already trying to do everything they can, I am forever grateful for their allegiance in this fight against discrimination. Change starts with one person, but it doesn’t happen until a lot of people get involved, and I am so happy to see others are finally taking notice of disabled people of color and our stories.

Written by Bethany

Bethany’s Instagram: @Rebellious_Story

Alex DzimitowiczComment