Disability is part of the human condition; almost everyone will experience disability—temporary or permanent—during our lives. We must continue working to create an inclusive, accessible future for all.
A group of people representing a range of disabilities and various races, ethnicities, ages, and genders cross a bridge made of speech bubbles to demonstrate how continued conversation and commitment support inclusion and accessibility. Photo credit: Gracia Lam.
EDITOR’S NOTE: We all want to live in communities where everyone has a fair and just opportunity to thrive, and disability rights advocate Javier Robles has been dismantling barriers to inclusion and accessibility. Robles, a Rutgers University professor, recently reflected on the impact of the Americans with Disabilities Act (ADA), the inequities COVID exposed, and the need for better public health data in a Q&A with Alonzo Plough, RWJF’s chief science officer and vice president, Research-Evaluation-Learning. Here Robles shares his personal story and what gives him hope for a brighter future.
My friend, the late Judy Heumann said “Change never happens at the pace we think it should. It happens over years of people joining together, strategizing, sharing, and pulling all the levers they possibly can. Gradually, excruciatingly slowly, things start to happen, and then suddenly, seemingly out of the blue, something will tip.” My life experiences are a testament to Judy’s words. I have been fortunate to have remarkable people around me, encouraging me and continuously driving positive change for people with disabilities.
Growing up in Newark housing projects, I had a tough upbringing, witnessing drug use and gang violence. I endured the loss of my cousin who used drugs and died of AIDS. The schools weren’t great, and poverty was what I knew. Then, at the age of 16, I sustained a spinal cord injury that altered my life. Suddenly, my family had a quadriplegic son who had to navigate the world in a wheelchair and needed accessible transportation and housing—this was before the ADA, when curb cuts and bus lifts didn’t exist. The social aspect was also difficult; my friends didn’t know what to say and ignored me.
Despite the hardships, I was grateful for many bright spots. My amazing high school guidance counselor was dedicated to helping me shape a promising future. She pushed me to improve my grades and helped me get into Rutgers University, where I did very well.
Growing up in Newark housing projects, I had a tough upbringing, witnessing drug use and gang violence. I endured the loss of my cousin who used drugs and died of AIDS. The schools weren’t great, and poverty was what I knew. Then, at the age of 16, I sustained a spinal cord injury that altered my life. Suddenly, my family had a quadriplegic son who had to navigate the world in a wheelchair and needed accessible transportation and housing—this was before the ADA, when curb cuts and bus lifts didn’t exist. The social aspect was also difficult; my friends didn’t know what to say and ignored me.
Despite the hardships, I was grateful for many bright spots. My amazing high school guidance counselor was dedicated to helping me shape a promising future. She pushed me to improve my grades and helped me get into Rutgers University, where I did very well.
RWJF President and CEO Richard Besser, MD, and co-chair of the Presidents’ Council on Disability Inclusion in Philanthropy, comments on the National Institutes of Health (NIH) decision to designate people with disabilities as a “health disparity population.” Read the statement >>
Navigating Multiple Identities
As a Latino, I cherish my culture that centers faith and family. When I became a young disabled Latino at the age of 16, I leaned on this strength of family and culture to begin forging my path. While schools didn’t teach anything about the disability rights movement and I initially didn’t have disabled role models, I eventually found my people.
One person who I met shortly after my accident was Diego, an 11th grade student in a manual wheelchair who had come from Colombia after a diving accident. We lived in the same development, understood one another, and learned to navigate the world together. We even attended Rutgers University at the same time. I went on to have many mentors in the Latino community who have supported my leadership in the state of New Jersey and have been there when I've needed them.
In fact, my firsthand experience as the president of a Latino advocacy organization has also reinforced my belief that accounting for all aspects of a person’s identity is crucial to informing inclusive policies and services so everyone can access the support they need. For example, addressing mental health can be challenging within the Latino community. Many don’t understand that mental health conditions are a disability. Language barriers and cultural stigma surrounding seeking mental healthcare can lead to further isolation. Poverty makes it even harder to overcome these barriers. This is why services for people with disabilities must be responsive to how all aspects of a person’s identity and circumstances intersect.
We must also recognize that the disability agenda is the Latino agenda, the Black agenda, the LGBTQIA+ agenda, the immigration agenda. Disability does not exist in isolation and inclusive policies address all dimensions of a person’s identity, including race, income, gender, in addition to disability. People with disabilities ask that there be “nothing about us without us”; people with different types of disabilities and who come from different cultures deserve the same. I encourage groups of all identities to bring people with disabilities onto their boards, and agencies and corporations to hire people of color with disabilities of all kinds.
Since my accident 40 years ago, I’ve felt like I belonged to two different places—but the reality is I belong wherever I am. It’s important for Latinos and all people to understand their inherent value within whichever community they belong to. Love yourself. Fight for others. Belong wherever you are!
What Gives Me Hope for a More Inclusive Future
Better data can help illuminate the fact that disability is part of every community, and the intersectional challenges that people with disabilities face. Acknowledging the importance of data, I was honored to serve on RWJF’s National Commission to Transform Public Health Data Systems, which did vitally important work.
That gives me hope, as does seeing philanthropies working together to address disability through the President’s Council of the Disability and Philanthropy Forum. Collectively, philanthropies can address issues that might seem insurmountable to individual groups. It’s exciting to witness philanthropy leaders recognizing that there can't be justice unless we include people with disabilities. All sectors—business, healthcare, education, government etc.—must do the same.
And there’s more to do. Philanthropies must continue educating themselves, hire and really listen to people who have lived experience with disabilities, and support organizations fighting for disability rights and inclusion. Disability justice should be incorporated into all grantmaking. Every foundation, no matter its mission, should be incorporating disabilities into its work.
The Promise of the Next Generation
As an educator, I believe that young people are going to demand this kind of broad-based change. This next generation is smart and savvy. People complain that “they’re on their devices all the time,” but they do amazing things with those devices. Judy Heumann understood the power and potential of young people to drive change and established a leadership program for young people with disabilities. Similarly, I tell my students to use social media to become leaders. They can start simply by following people with disabilities.
Without question, we need to teach disability history—in K though 12, as well as higher education. Students need to understand the past so they will fight for a better future. They need to know about the victories won by the people who came before them. But I tell them never to assume that they are fully protected because of the ADA. The reality is that discrimination persists, and they must act when they witness injustice.
Whether it’s convincing lawmakers to invest in policies that support people with disabilities or navigating emerging technologies like AI that have the potential to enhance or harm the lives of people with disabilities, young people will continue facing challenges to navigate. I have confidence they are up to the task.
Learn more about Javier Robles’ views on the ADA, the pandemic’s impact on people with disabilities, and how better public health data can advance accessibility and inclusion.>>
About the Author
Javier Robles is a faculty member at Rutgers University in the Kinesiology and Health Department and is co-chair of the Rutgers University Disability Studies Committee.