Intersected | I, too, am justice: Life as a disabled Latiné

By Iliana Rivera

Iliana Rivera

Today Intersected welcomes a guest writer, Iliana Rivera. She roomed with Layla and Skye back in college and is passionate about advocacy work that aims to create inclusivity and equity across racial, socioeconomic, and physical divides. She graduated with a B.S. in Psychology and is currently working on a new project, Reclaym, that seeks to raise positive awareness about invisible and visible disabilities. Thanks for taking the time to write, Ili. Let’s dive into your work.

Disability Justice Is Civil Rights Justice

Disability justice is civil right justice. It is integral to racial justice and other parallel civil rights issues. We live in a reality where those who look different from the “American ideal” are criminalized, and their stories are erased or manipulated in order to validate the withholding of basic necessities or the use of deadly force.

Particularly for those like myself who are people of color (POC), this stark reality is not new. There’s a long history of POC with disabilities experiencing various kinds of discrimination. For example, in my experience, medical professionals fail to listen. Doctors are not always on our side, and they have a history of ignoring our reports of chronic pain or even disregarding that we have been in a similar situation before and need to take preventative action now.  

Just this June, Michael Hickson, a Black paraplegic father with COVID-19 was denied medical care, such as nutrition and hydration, for six days at a Texas hospital and died as a result. Claims by ethical experts who helped create end-of-life legislation say that these decisions should never utilize one’s quality of life as a justification for whether or not to withhold treatment. Despite this, Hickson’s doctors made statements that strongly alluded to just that during a recorded conversation with Hickson’s wife, thus discriminating against Hickson because of his disability. 

Prioritizing a single part of a person’s identity, such as race or gender, not only erases particular experiences that an individual faces, but it also detracts from the ability to give them proper medical care, push for fair policies, provide equal housing opportunities, and much more. When we fail to recognize that disability is integral to this ongoing conversation, we fail to come up with creative and effective preventative solutions. 

This failure often results in police brutality and discrimination against minorities with disabilites. When we say the names of Sandra Bland, Stephon Watts, Ezell Ford, Tanisha Anderson, and Laquan McDonald, we lift up them AND their disabilities. Period.

There is plenty of work to be done to reimagine what the future of public safety could look like, because it is definitely not this.

Iliana Rivera

I, as a Latiné, disabled woman, do not have the privilege to forget this. You, as a reader seeking to gain a better grasp on intersectional thinking, can no longer forget this. 

My Experiences as a BIPOC Individual with a Disability

Iliana Rivera with Morty Mortimer, the Bunny Explorer. PC: Tiffany Gong

A little about me: My ethnicity is Puerto Rican, which means I am of mixed race (Black, Native Taíno, and white European) and fall under the BIPOC category. I am electric scooter-bound, living with an autoimmune neurological disorder called Myasthenia Gravis (MG), which affects all of my voluntary muscles at fluctuating rates. 

Although I am very light skinned, I am also not white. I am always afraid that due to specific aspects of my disability in addition to my race, I will be perceived as someone “crazy,” who is somehow lying about my inability to get out of a vehicle if asked by the police, and will thus be dragged and tazed. I have seen, heard, and experienced far too many situations that tell me that disabled people of color have to be vigilant and have to appear as able-bodied as possible in order to have a chance of avoiding an unfortunate scenario. 

For example, in 2018 Jacob Bonczy, a young paraplegic man in Fairfield, CA, was dragged out of his car by police, who stripped him of his pants and tazed him in the process. This happened despite both Bonczy and his girlfriend repeatedly expressing that he was paralyzed and could not get out of the vehicle. Additionally, a wheelchair is clearly seen in the back trunk in the video taken of the situation. 

Unfortunately, I can only find few offbeat news articles that even speak about his story, with the race of Jacob Bonczy unknown. The lack of coverage is disturbing, yet even in this example, it is indisputable that there is plenty of work to be done to reimagine what the future of public safety could look like, because it is definitely not this.

Over a Quarter of Americans

Disabled people make up roughly 26 percent of the U.S. population — that’s roughly 61 million people. Additionally, up to half of the population killed by the police are people with disabilities (people who are physically and/or neurologically disabled or have a mental health condition). 

In 2019, 25 percent of Americans killed by police were Black. According to a report made by the Ruderman Family Foundation, most of the individuals killed in use-of-force cases that attract widespread attention were also people with disabilities — Sandra Bland, Stephon Watts, Ezell Ford, Tanisha Anderson, Laquan McDonald, to rename a few. 

If their disabilities are ever named via social media, it is typically used as a tool to blame the individuals themselves for their own violent deaths at the hand of law enforcement. This is incredibly unfortunate, and without recognizing their race along with their disability in an honorable and nondiscriminatory way, it makes it that much harder to decrease violent outcomes in the future. 

Kimberlé Crenshaw, the woman who first coined the term intersectionality, stated, “It’s not simply that there’s a race problem here, a gender problem here, [a disability problem here], and a class or LGBTQ[IA] problem there. Many times that framework erases what happens to people who are subject to all of these things.”

Lessons in Disability

Iliana Rivera. Art by Lucy Rose

To backtrack a little, I was not always disabled. In fact, I developed my disability around the age of 14. Throughout my time learning what life is like as a person with an oftentimes invisible disability (my symptoms are not always visible and are not stereotypical), I have learned several truths that I’d like to share with you.

As a quick aside, although I personally use the terms disability and illness to cover physical conditions and disabilities, neurological conditions, and mental disabilities, not all people living under these conditions will identify in the same way. It’s always best to ask people how they identify instead of assuming or labeling. 

In My Time as a Disabled Latiné Woman, I’ve Learned That…

…being disabled and Latiné means that I must be my own self-advocate. 

We live in a world that was not built for us. It’s an exhausting reality. Whether it’s finding affordable and accessible housing, receiving proper medical care, or advocating for proper accessibility needs in vocational settings, being a minority and having an invisible disability creates huge rifts in the quality of my life. 

Despite the legal aspects of the ADA and IDEA, which are in place to help prevent discrimination against those with different abilities, there are still many hoops we have to jump through in order to tackle the most basic concerns that we face day to day. 

For instance, those who want equal housing opportunities have to become their own advocates because finding affordable accessible housing in cities such as Chicago is almost impossible. If you are on the waitlist for housing vouchers during a pandemic like I am and rely on SSI as your own personal income, finding housing can seem like a nightmare.

But if I don’t fight for myself, who will? 

In the educational setting, I have had to self-advocate for particular accommodations that prevented me from receiving my bachelor’s degree for almost two whole years. Currently I am fighting for the right to bring a personal support person with me to a six hour long infusion session due to COVID visitor protocols. 

…being disabled and Latiné, I have to constantly prove my disability.

At times, I have to quite literally debate with able-bodied individuals, who may also be covertly or overtly racist, to convince them that a particular accommodation is necessary for me to have an improved quality of life. The same goes for organizations.

In medical settings, I’ve had several uncomfortable visits where doctors will brush over my lived experiences and try to diagnose my needs after a mere (and may I add quick) physical examination. It is insufficient and ill-informed. This is without even asking if on that particular day I happened to have a lot of energy and strength, due to the fluctuating nature of MG. 

…being disabled and Latiné means that I have to become my own mentor.

Growing up, I always yearned for a mentor who understood my experiences and could relate to me, not explain my situation away. However, I never seemed to find one. Just like many other disabled people, particularly BIPOC individuals, we become our own role models and our own mentors. We have to push forward alone, paving the way for those who come after us.

…being disabled and Latiné means inherent visibility when it’s palatable to others yet being invisible otherwise.

Disability in the U.S. and within the larger Latin American context is often overlooked unless used in a way that either takes pity on an individual and their family or infantilizes adults with mental illnesses. 

In news outlets, disability is almost seen as a justifiable reason to use deadly force against someone, as seen with those who have had schizophrenia and bipolar episodes which lead to deadly force from the police. Let’s say a few of their names: Michelle Cusseaux, Deborah Danner, Ezell Ford.

In the media, disability is often portrayed as a symbol of the evil-spirited. It is commonly used for “the other,” is extorted as a plot device, and those with disabilities are seen as lazy or as objects rather than human beings. The positive inclusion of multidimensional people who just so happen to have disabilities seems almost non-existent.

…being disabled and Latiné means isolation. 

This worldwide pandemic makes it an interesting time to be disabled and a POC.  According to the CDC, disability rates are higher in communities of color, compounding with parallel societal issues. 

Additionally, studies referenced by newsource RespectAbility claim that many people within the larger Latinx community often hide their disability due to negative stigmas received. Fortunately, I did not have that experience with my inner circle, but I can only imagine how one might feel being Latinx, disabled, and isolated, since family is historically a big part of our culture

As for my own experience, isolation has been an important factor in how I have been functioning within the past five months. Due to the nature of my disability, I am considered high-risk in this pandemic. Gauging who to see, when, and how has become a painstaking venture. 

It’s important to note, however, that living this way is a normal experience for some people, depending on their disability. We should be thankful for our current abilities and continue to do what we can for those around us who always have to think about the dangers of casual interactions. For some, contracting a cold can be a life or death situation. We should also be careful that we do not discriminate and isolate others based on their quality of life.

Incorporate Intersectional Thinking in Your Everyday Life

In order to do better, we need to stop separating issues into separate categories, for that erases the complex nature of being BIPOC and disabled and stunts effective solution making. 

ALWAYS ask yourself this question when seeking solutions: “Who am I excluding or harming?”

One way that you can contribute to this call for action on a microlevel is by simply diversifying your media, and here’s a good place to start!

Some wonderful people to follow on social media who are CHANGING the game:

  1. Aaron Philip — Black, trans, and disabled fashion model
  2. Chella Man — deaf, genderqueer, trans-masculine, Chinese and Jewish artist and actor
  3. Jillian Mercado — disabled, AfroLatina Dominican, queer actress and fashion model
  4. Jen Deerinwater — bisexual, Two-Spirit, disabled citizen of the Cherokee Nation
  5. Princess Nokia — queer, Black and Indigenous Puerto Rican rapper and activist

Some writers to read, more amazing disabled POC:

  1. Alice Wong — founder and director of the Disability Visibility Project, editor of Disability Visibility and Resistance and Hope: Essays by Disabled People 
  2. Reyma McCoy McDeid — executive director of Central Iowa Center for Independent Living and public figure/activist
  3. Lia Seth — author of multiple personal essays and op-ed pieces on her experiences as a disabled, queer WOC 

Additionally, you can take a larger step and join others in creating and reimagining solutions to societal issues that effectively incorporate the multidimensionality of people of color. 

ALWAYS ask yourself this question when seeking solutions: “Who am I excluding or harming?” If you don’t already have platforms or groups of friends to have these discussions with, join a ZIP lab! Through that nonprofit, you can help research topics, share personal stories, and create tangible action steps as part of a community striving for social change.

Another easy step to becoming a more intersectional thinker is to participate in more webinars and other conversations like this. You can start by subscribing to this blog to keep the conversations going! But this topic will have to be at the forefront of your thinking or else change cannot happen!

Finally, you can consciously change your language by, yet again, doing the work! Here is a general guide to alternative and affirming terminology when it comes to talking about people with disabilities or disability related topics. Thanks for engaging with us at Intersected today!