Recasting the word ‘Disabled’ with Writer and Advocate, Lucia Rios

Lucia Rios is a journalist, educator, and budding author who was born with Spina Bifida and uses her personal experiences to improve the lives of others while pursuing her dreams. Spina Bifida occurs during pregnancy when the spine and spinal cord don’t form properly. In babies with Spina Bifida, a portion of the neural tube does not develop or close, causing differences in the spinal cord and in the bones of the spine.

Growing up, Rios’s family raised her to view her diagnosis as a part of her life and not as something she should be defined by. However, when she began attending college – the first in her family to do so – she started to experience increased physical barriers and discrimination. As a crutches and wheelchair user it was difficult for her to navigate her college campus and thus she began to advocate for herself. An inspiring Journalism major, Rios saw the opportunity to connect with her peers and school staff and professors that didn’t have disabilities through her writing and class assignments. Her goal was to raise awareness about the lives of people with disabilities to those without them in order to bring improvements to the school and beyond. 

Upon graduating from college in 2002, Rios was hired full-time at The Center For Independent Living after the Executive Director had a meeting with her and told her she really enjoyed her writing. Rios was hired as the Accessibility Specialist and part of her task included visiting public sights and essentially assessing how accessible they were. Accessibility isn’t just about ‘handicap’ parking spots or ramps; it includes a range of other variables including measurements, abiding by federal and state laws, seating, airflow, methods of instruction, and workplace accommodations, to name a few. After that position, she became the Community Access Specialist, which encompasses weekly presentations to youth and community, in addition to providing training on disability etiquette, access, and employment.

Rios’s job is especially important because often times when people say “diversity and inclusion” they forget the diversity of bodies and the fact that people come in a variety of different ways. Although the American Disabilities Act was passed in 1990, progress has been slow at best and the current Trump administration is seeking to scale back the accommodations this act has made possible thus far.

According to the official government website, The American Disabilities Act is a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life, including jobs, schools, transportation, and all public and private places that are open to the general public. The purpose of the law is to make sure that people with disabilities have the same rights and opportunities as everyone else. 

However, the ADA almost seems like a living document because it continues to be revised, updated, and called on to be even more expansive and inclusive. As recently as 2017, parts of the ADA’s title regulations were updated to tell public movie theatres that they must provide closed movie captioning and audio descriptions whenever showing a movie that has these features available. 

According to the Center for Disease Control, 1 in 4 – 26% – of adults in the United States have some form of disability. For Hispanics, having both diabetes and depression can lead to compounded difficulty of completing activities of daily living. Stump, Clark, Johnson, and Wolinsky’s 1997 study found that Hispanics over the age of 70 reported needing more help, experienced more difficulty, or were more likely to be unable to complete activities of daily life than non-Hispanic Blacks and non-Hispanic whites. 

When researching the rates and realities of disabilities in the Hispanic community, it is important to recognize that immigration status, time and age of immigration, and the country of origin can greatly impact ones life. 

Markides and colleagues (2007) research found, “both Hispanic men and women reported higher levels of disability at older ages than non-Hispanic whites, with Hispanic women exhibiting higher disability rates than their male counterparts.” However, when they further researched they found that, “older Puerto Ricans exhibited the highest rates of disability regardless of gender. For men, Mexican Americans, Dominicans, and ‘other Hispanics’ reported higher disability rates, Central Americans and Cubans had similar disability rates, and South Americans reported lower disability rates than non-Hispanic whites.”

Rios has been working, improving, and making West Michigan a better and more accessible place since she was a student in Undergrad. Although her work is not solely for the Hispanic disabled community, her being a Latina living with a disabled experience doing access and awareness work in the Midwest is important because the Hispanic community in the Midwest increased by 4.4% from 1980 to 2009. 

In 2013, after not getting a writing opportunity she had hoped for, Rios was feeling down but thankfully did not let that stop her from entering the National Disability Institute’s My American Dream: Voices of Americans with Disabilities” video contest — and she won! The National Disability Institute is a nonprofit organization that works to create a better financial future for all Americans with disabilities. Upon winning, she received $1,000, a tablet of her choice, and the incredible opportunity to work with a Joseph Shapiro of NPR, someone she had looked up to for a long time. “ [Joseph Shapiro’s] book [No Pity] was my introduction into the disability rights movement. I read the book over 11 years ago after I joined the staff at my local Center for Independent Living. It was an honor to have him as my mentor.” 

With her longtime idol as her mentor, Rios began to actively pursue her dream of writing a book. “Connecting with Mr. Shapiro has given me confidence in writing that I’ve not had before. Here was a published author, and journalist, reading my articles and blogs, saying he believed I had something to write about and could do it,” Rios said on the National Disability Institute’s blog. Her process to author is well underway after she successfully reached her Indiegogo fundraiser.

Rios is doing amazing work and it’s up to everyone else to help push that work forward. H.R 620 is a GOP bill that has made many people with disabilities nervous and worry that the current administration will continue to roll back the ADA’s 1990’s protections and small progress. Public transit in major cities continues to be highly inaccessible to the point of class action lawsuits and there are laws that make it possible for employers to pay people with disabilities lower than minimum wage for work. 

However, it’s not just federal policy that needs to be adjusted to be more accessible and less patronizing towards people with disabilities. The ways in which people that do not have a disability speak and interact with those who do is oftentimes wrong and full of backhanded compliments or highly intrusive questions. Twitter threads like the one disability activist Imani Barbari started — #DisabledCompliments — highlights the seemingly okay yet highly offensive things non-disabled people say to those with disabilities all the time. 

Rios continues to improve the lives of many people living with disabilities through her passion for combining her personal experiences into her professional goals while writing her truth for many to read. She is doing amazing work and it is also the responsibility of people who do not have disabilities to follow the lead of disability advocates like Rios and speak up when things are inaccessible and wrong.