Issue 15: Undocumented, disabled and hung out to dry. Still, we rise.

On being a blind, undocumented Latina—and how the public charge rule hurts disabled immigrants

Foreign Bodies is a mental health and well-being newsletter centering immigrants and refugees with a mission to de-stigmatize vulnerability through storytelling. Our work is directly funded by paying subscribers.

I’m Conchita—short for Maria de la Concepcion in Spanish. I was born in a small town about an hour away from Mexico City, and came to the United States when I was five years old with my mother and four siblings. My brother and I are both legally blind.

When we first arrived in the U.S., we came as tourists, with no plans to stay. But during our visit, my mom learned about services here that actually helped people with disabilities—people like my brother and I.

In Mexico, we did not have such protections. There were no professionals to help guide us. At the time, a child with a disability in my country did not have the right to a public education. No educator in our area knew how to teach us, and there were no accommodations or attempts to include us in school. Many students actually end up dropping out. Today, about 60% of people with disabilities in Mexico remain illiterate.

Unlike in the US, Mexico as we knew it didn’t view these roadblocks as the overarching problem. Instead, it was those of us with disabilities who were considered problematic.

My mom knew that back home, our opportunities for education, for employment, and for happiness would be very limited. So we did not return to Mexico when our visas expired.

These decisions are often vilified in the media, but I will be forever grateful for the difficult choice my mother made for our family. 

Undocumented in the United States of America

Like many undocumented immigrants, we did not know the language or have any family here to rely on. When we settled in the small farm town of Woodland, California—which was not and still isn’t a sanctuary city—we also quickly realized that due to our status, no one could be trusted.

The fear of deportation was always present. We could have fun, sure, but we could not divulge too much information, get too close to friends or attend faraway school trips. We knew police often worked closely with immigration officials, and that someone could be deported if they were pulled over for a broken tail light or for speeding. There were many raids on and off around town, so we often stayed home.                               

Though things were definitely difficult, I cannot overemphasize how joyful we tried to make it. Growing up, my family was very involved in our church, where we built connections with others in the same situation as ours—connections that are still strong to this day. We still celebrated, enjoyed life and built a strong community that was always there for each other. 

What it means to be undocumented and disabled

The first thing I did when I became a permanent resident was travel to Mexico and meet family I had not seen in 15 years. The second was receive the support I needed to plan for a future.

Though no one told me at the time, I later learned that having this legal document meant I was finally eligible for government disability rehabilitation services. Up until then, our limited language proficiency and immigration status kept us from getting adequate disability support. Schools and doctors’ offices did not bother to fully explain things to my parents because of the language barrier. And while we were in California—the birthplace of the modern disability rights movement—we never had access to information about disability rights nor did we know where to turn for help.

Undocumented immigrants are barred from participating in Medicare, Medicaid, or accessing the Affordable Care Act network. However, while in public school, my brother and I qualified for special education with Individualized Education Program (IEP) documents. The IEP program was never fully explained to my parents, and what we did get was minimal, but in all honesty, they were just glad we had any type of service in school as this did not exist in Mexico.

My brother and I also received a mediocre health plan that left us with just one clinic near town willing to see us. But the wait was always hours long; you never knew when you would actually be seen. If we had to go to the doctor, this meant we would have to take an entire day off from school. That’s why my mom often used home remedies. We didn’t go to the clinic unless there was an emergency.

At a loss, my mom would take me to church services she believed could help heal my blindness. To say it was awkward is an understatement. It was traumatic.

I somehow figured it out and graduated high school. Through the National Federation of the Blind and with the help of Carlos Servan, a blind man from Peru, I learned how to travel independently, cook for myself and even read fluently. Soon, I was able to apply for college. Now, at 34, I’m pursuing my doctorate in special education and currently work in administration on issues of blindness in public schools. I am able to travel freely and can provide for my family. But life could have been so much easier for me had I been given adequate services.

Being disabled and undocumented also severely limits the type of work you can do. It makes you feel like an outsider in every community you are a part of, and no one fully understands your experience.

I have met recipients of DACA—or the Deferred Action for Childhood Arrivals (DACA) program, who lost their work permits because they weren't able to efficiently do their jobs. Some who gained their disability at work couldn’t take advantage of disability-related benefits and wages. When an undocumented friend of mine fell on the job as a construction worker, for example, his company offered him a meager amount of money for disability compensation because they knew people like him had few options.

My new Green Card finally afforded me those transformative disability services and rights.

We need to do better.

Everything I’ve learned in college and beyond, I’ve shared with my parents and my community. My parents have come a long way and now have a much more positive view on disability, which goes to show this wasn’t just an issue within Latino culture, and that stigma wasn’t the sole barrier. There was also a significant lack of access to information.

It is absurd that I had to go to college to learn about basic disability rights and systemic roadblocks for disabled immigrants, especially for those of us who are or were undocumented. The disability community needs to make more of an effort to reach out to families like mine—people who may never make it to a college lecture series.

I’m trying to do my part, too.

Four years ago, I founded a nonprofit called METAS with some of my best friends and fellow professionals. It stands for Mentoring Engaging and Teaching All Students.

We help train educators in Latin America and the U.S. who work with blind or disabled students, offer free workshops and support to blind individuals and their families—no matter their immigration status—and we incorporate mental health aid throughout.

Last year, I switched roles from being a teacher to focusing on efforts to ensure blind students are being educated in the state of Maryland. I love working to change systemic issues that were once barriers for me.

When we’re able to fund a workshop and get a cane into the hand of a blind individual who has never left the house before, or we finally get a young blind person connected to information—I can’t describe how fulfilling it feels.

The elephant in the room: public charge

It’s obvious that getting a Green Card changed everything for me. But had the current public charge rule been in effect, I would not have been eligible.

The Inadmissibility on Public Charge Grounds final rule was officially implemented on Feb. 24, 2020. Imposed by the Trump administration, it aims to deny permanent legal status (Green Cards) to immigrants who appear likely to need public benefits such as Medicaid, housing vouchers or food stamps.

The U.S. has had different versions of public charge in the books, and Fiza will go into detail later on in this Issue. But the main difference between this new ruling and previous policies is that this specifically relates to services. Medicaid, according to the American Civil Liberties Union, is the only way to access critical disability services. And disability rights advocates like myself are concerned that this policy will discourage immigrants with disabilities from accessing the benefits they need to fully participate in society whether or not the service is listed as a public charge. Families will quit using any and all benefits just to be safe.

Disabled immigrants depend on many of these services to live. People are going to die because of this, and that’s not an exaggeration. 

According to the National Law Review, Congress first established the public charge rule in 1882 to allow the government to deny a U.S. visa “to anyone who is likely, at any time, to become a public charge”—someone whose lack of resources is judged likely to make them a burden on taxpayers.

In the 1880s, the target of the rule was “any convict, lunatic, idiot or any person unable to take care of himself or herself,” University of Miami School of Law historian and professor Kunal Parker told NPR’s Mary Louise Kelly last August.

At that point in post-Civil War America, immigrant demographics were beginning to shift. The country had grown accustomed to a large number of migrants from northern and western Europe, but “there was a lot more negative sentiment towards immigrants from the east and south of Europe and from Asia,” said Parker. Officials often excluded people from entering the country if they were likely to be public charges—that is, if they looked ill or had little cash in their pockets.

According to The Book of Instructions for the Medical Inspection of Immigrants, pregnancy (regardless of marital status) and the sexually transmitted diseases syphilis and gonorrhea were also listed as grounds for exclusion in the 1900s.

Unlike today, there were no general welfare programs like food stamps or Medicaid set up at the time, so it wasn’t really feasible to target people who would make use of ‘em. The particulars of immigration restriction didn’t really fall under the scope of the federal government either; this was largely an issue handled at the local level. Officials around the country interpreted the provision in their own ways, applying various and inconsistent standards.

It wasn’t until 1999 that the feds issued more formal guidance on public charge through the Field Guidance on Deportability and Inadmissibility on Public Charge Ground. The provision defined a public charge as someone “primarily dependent on the government for subsistence, as demonstrated by either the receipt of public cash assistance for income maintenance, or institutionalization for long-term care at government expense.” These guidelines explicitly excluded Medicaid, food stamps, WIC, unemployment insurance, housing benefits, child care subsidies, or other non-cash benefits from qualifying immigrants as public charges.

The new 2019 ruling, on the other hand, says that immigrants who have received public benefits such as Supplemental Security Income, Temporary Assistance for Needy Families, the Supplemental Nutrition Assistance Program, Medicaid, and public housing assistance for more than a total of 12 months within any 36-month period may be classified as a “public charge” ineligible for permanent residency. It specifically targets immigrants who use (or would probably use) safety net programs to stay permanently in this country. Certain types of immigrants are exempt from the current ruling, including: refugees, asylees, petitioners under the federal Violence Against Women Act, certain T and U visa applicants, and Afghans and Iraqis with special immigrant visas.

The Trump administration first published a version of this proposed rule in October 2018.

In January 2020, the U.S. Supreme Court voted to begin enforcing the new rules as relevant lawsuits continued through the federal court system. On February 24, 2020, the Inadmissibility on Public Charge Grounds Final Rule went into effect for most of the country.

Kenneth T. Cuccinelli II, the acting director of the United States Citizenship and Immigration Services (USCIS) stated the policy will "have the long-term benefit of protecting taxpayers by ensuring people who are immigrating to this country don’t become public burdens, that they can stand on their own two feet, as immigrants in years past have done."

But Marielena Hincapié, the executive director of the National Immigration Law Center, along with most disability rights advocates, argues the rule "will have a dire humanitarian impact, forcing some families to forgo critical lifesaving health care and nutrition. The damage will be felt for decades to come."  

For more FAQs and really, really, really specific details about the recent ruling, read this really, really, really long USCIS page on public charge.

1. The public charge rule, advocates and experts say, will dramatically increase the likelihood that legal immigrants and their families will forego mental health benefits out of fear.

According to the Urban Institute’s 2018 Well-Being and Basic Needs Survey, one in seven adults in immigrant families (13.7%) reported avoiding public benefit programs, including those related to health, in 2018 for fear of risking future green card approval. The figure was even higher (20.7 %) among adults in low-income immigrant families. Adults who had heard “a lot” about the proposed rule were the most likely to report “chilling effects.” This was after the public charge rule was first proposed and before it ever went into effect.

2. We already know deportation and family separation can lead to significant psychological consequences. This rule is likely to only increase deportation numbers and instill more fear within immigrant communities.

According to the American Psychological Association, research shows “immigrants who fear deportation are much more vulnerable to heart disease, asthma, diabetes, depression, anxiety and post-traumatic stress disorder” and their kids “are more likely to experience psychological distress, academic difficulties and disruptions in their development.” In October, the United States Commission on Civil Rights found that the effects of family separation and detention policies were “widespread, long-term, and perhaps irreversible physical, mental, and emotional childhood trauma.”

3. Vulnerability increases even more when the people experiencing mental illness also belong to other scrutinized groups, such as disabled immigrants or undocumented immigrants—or disabled, undocumented immigrants like Conchita.

For many, physical disability and mental health go hand-in-hand. If a physical disability affects your ability to work, if you rely on benefits to do said work well, you’re likely to experience added stress, anxiety and depression, especially over financial stress, sense of identity and sense of fulfillment. Undocumented immigrants who may not have a reliable community they can trust are also likely to isolate themselves. And research shows social relationships play a critical role in the mental health and wellbeing among those with disabilities.

4. This is all on top of the fact that immigrants are already at an increased risk of psychological harm compared to the native U.S. population.

Immigrants living through migration and acculturation are likely to face their share of prejudice or discrimination, both of which are factors that increase risk of mental health issues. Studies show that the longer immigrants live in the U.S., the higher their risk of psychiatric disorders largely due to issues like cultural stigma; the pressure to succeed/validate the struggles of the previous generation; the confusing sense of identity or pressure to acculturate but hold onto tradition; negative immigration policies and attitudes; lack of insurance etc. 

5. Mental health stigma is likely to worsen, both here and abroad.

As the American Association of Physicians of Indian Origin (AAPI) tweeted last year, APA research shows “among females from all racial backgrounds between the ages of 65 and 84, Asians had the highest suicide rate. #PublicCharge rule can exacerbate this issue making it more difficult to access mental health care and address cultural stigmas.” This, I fear, will harm so many families and generations.

Those are only five ways this rule intertwines with mental health. I’d go on, but I keep getting a “post too long for email” warning.

Find your community within the disability rights movement.

From Conchita:

Many mental health services are often out of reach for immigrant communities who don’t have health insurance or legal status. But I believe in the resiliency of community and how regardless of the law, we will continue to thrive and educate each other. Communities will serve as the delivery model that the state fails to provide.

Find your community and let it wrap you and guide you forward, because talking about what we are struggling with and sharing it with others who understand makes the load a little lighter. One way to do this is to find inspiring activists who are leading the conversation.

Here are just a handful of Conchita’s personal role models:

• Carlos Servan was in military training in his homeland of Peru when a grenade exploded in his right hand. According to an essay he wrote in 2001, Carlos lost that hand and was blinded immediately. He and Conchita met through the National Federation of the Blind, where he helped her access disability services that completely changed her life. Currently, Carlos is executive director at the Nebraska Commission for the Blind and Visually Impaired.

• Dior Vargas is a queer Latina feminist mental health activist and creator of the online photo series, People of Color & Mental Illness Photo Project. Her book, The Color of My Mind: Mental Health Narratives from People of Color, is based on the project. You can follow Dior on Twitter or check out her website for more.

• Sara Acevedo is an “autistic mestiza, educator, and disability justice advocate born and raised in Colombia,” and part of the National Coalition for Latinx With Disabilities’ Society for Disabilities Studies. Listen to Sara speak on disability, culture and identity through the California Institute of Integral Studies podcast here.

• Rosy Carranza is a blind Latina who advocates for educational equity among individuals with disabilities. In 2009, she penned this braille letter to former President Barack Obama on the systemic deficiencies she experienced in the United States as a blind immigrant. “I graduated from high school unable to see well enough to read my own diploma,” she wrote.

• Yosimar Reyes is a queer undocumented poet who coined the hashtag #UndocuJoy to show the world that our experiences aren’t always about performing trauma. We live, love and we can enjoy life, too. But we may need a community of support to remind us every now and then. You can follow Yosimar on Twitter or check out his website for more.

Do some reading.

There is already so much out there on disability and how to think about it in a progressive way that it is really transformative.

Conchita recommends the following:

• Autistic Hoya: Radical writing about disability, neurodiversity and autism

• Disability Visibility: An online community on amplifying disability culture

• Disability Justice is a term coined by Black and Brown disabled individuals. Learn what it’s about and how you can be a part of it.

• Sins Invalid: a disability justice based performance project that incubates and celebrates artists with disabilities, centralizing artists of color and LGBTQ / gender-variant artists

• This Disability Justice Primer: a primer from Sins Invalid on disability justice

Tell your story.

You don’t have to be a professional writer to publish your truth. In addition to journaling or starting a blog or newsletter, consider submitting pitches or stories to editorial sections of your favorite outlets. There’s HuffPost Personal, Teen Vogue Identity, ZORA and many more publications that value new voices. And of course, don’t forget about Foreign Bodies!

Such a Pretty Girl by Nadina LaSpina is one of the few disability memoirs to focus on activism, and one of the first by an immigrant. It tells LaSpina’s story as a girl growing up with polio in Sicily, Italy and then follows her to America, where she spends much of her youth feeling hopeless in hospitals. But a new kind of power blooms once she joins the disability rights movement. “It is the journey to find one's place in an ableist world—a world not made for disabled people, where disability is only seen in negative terms.” (NYU Press)

How U.S. Immigration Treats Disabled Kids (Michael Waters, The Outline): Vandelice de Bastos noted in her asylum claim that her grandson Matheus da Silva, who has autism and severe epilepsy, was a target at home in Brazil. Despite clearing the preliminary interview, officials still sent her grandson far away from her, to a holding center in Connecticut. Read here.

Life With a Disability in the Migrant Caravan (Carlos Ríos Espinosa, Human Rights Watch): “Living in Latin America with a disability has never been a simple task,” writes Espinosa, a researcher, advocate and wheelchair user living in Mexico City. But for the nine people with disabilities he met on migrant caravans in Central America and Mexico, things were far worse. Read here.

A massive thank you to Conchita, Marissa (that art!) and my editing champs, Hanaa’ and Farah.

What did you think of this issue? Anything in particular stand out? Tell me in the comments or send an email my way.

—Fiza

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Foreign Bodies is an email newsletter centering immigrant and refugee experiences with a mission to de-stigmatize mental illness through storytelling. It’s written and curated by Atlanta-based writer Fiza Pirani with copyediting and fact-checking help from Boston-based journalist Hanaa’ Tameez and traveling journalist Farahnaz Mohammed. Want to contribute your time or share your own #ForeignBodies story? Fill out this form and be sure to say hi on Twitter @4nbodies or Facebook. Special shout-out to Marissa Evans for Issue 15’s art and Carter Fellow and friend Rory Linnane for our adorable animated logo!

If you're thinking about suicide or worried about someone who might be, call the National Suicide Prevention Lifeline at 1-800-273-TALK (8255) or text 741741 to connect to a crisis counselor in the USA. You can also find a wealth of culture- or language-specific recommended resources on our site, foreignbodies.net.