The Disability Rights Movement: 5 Key Names You Should Know

Last year, I took a class called “Disability and the Media” to fulfill a gen-ed requirement. The class sounded like an interesting enough way to finish the mandatory U.S. diversity perspective, but what I didn’t know at the time was that this class would change my entire worldview. Not only did we talk about the representation of people with disabilities in the media, but we also learned a comprehensive history of the disability rights movement, which we shockingly knew nothing about beforehand. As college students, we’re familiar with so many activist movements and social causes, but the fight for human rights for people with disabilities is one that most of us don’t seem to be familiar with. We can think of key feminist thinkers or people who fought for racial equality, but if you asked the average person to name one of the faces of the disability rights movement, the answer will probably come less easily.

So what exactly does “disability rights” mean? The Americans with Disability Act (ADA), passed in 1990 and regarded as a hallmark piece of legislation for people with disabilities, defines a disability as “a physical or mental impairment that substantially limits one or more major life activities of such individual.” The language of the ADA is deliberately vague to provide as much coverage as possible—even if a person does not consider their life to be “substantially limited” by a disability, they can still qualify for accommodations. 

The ADA covers everything from physical impairments to mental illnesses, so the history of disability rights can be difficult to exactly trace. In general, most of the fight has revolved around gaining the ability to live independently and access to proper healthcare, which are important causes to nearly everyone with a disability, physical or cognitive. While there are many figures that have contributed to the movement, these five people are especially important to remember for the strides they made in fighting for disability rights.

  1. 1. Ed Roberts

    Ed Roberts is considered to be the founder of the independent living movement. Throughout American history, people with disabilities were constantly treated as objects of twisted entertainment and fear, and then they became associated with charity and pity. The independent living movement centers around the idea that people with disabilities are autonomous human beings who should be given the opportunity to care for themselves outside of institutions and make their own decisions. Roberts was paralyzed from polio and needed an iron lung. He attended UC Berkeley in the 1960s, although getting in was no easy feat. Administration wanted to revoke his acceptance because the iron lung wouldn’t fit in a dorm, but he managed to change their minds. From then on, Roberts advocated for people with disabilities to live independently and participate fully in their communities.

  2. 2. Judi Chamberlin

    Judi Chamberlin is one of the faces of Mad Pride, a submovement of disability rights advocating for people with mental illnesses. Chamberlin was institutionalized against her will in the 1960s after suffering a miscarriage and seeking help for depression. She then fought for an end to forced institutionalization and involuntary treatment, challenging the entire mental health system. Chamberlin and other members of the Mad Pride movement sought for inclusion of people with mental illnesses in their own treatment plans, moving away from treating the mentally ill as incapable and instead focusing treatment on what patients themselves want.

  3. 3. Judy Heumann

    Judy Heumann has used a wheelchair for most of her life after contracting polio. After graduating college, she wanted to be a teacher, but the New York Board of Education failed her because they didn’t think Heumann would be able to save herself or her students in an emergency situation because she uses a wheelchair. After suing the board, Heumann became the first wheelchair user to be a teacher in New York City. From then on, she became an activist for people with disabilities, founding Disabled in Action to help others who were denied opportunities and rights because of their disabilities. She was appointed by Barack Obama in his presidency to be Special Advisor for International Disability Rights.

  4. 4. Peter Staley

    In the 1980s, Peter Staley was one of the activists at the forefront of the AIDS civil rights movement. The epidemic was infecting thousands of Americans each day, but the government was making little to no effort in helping to find a cure. Staley was one of the first members of the AIDS Coalition to Unleash Power (ACT UP), an activist group that demanded action to solve the crisis. He went on to co-found the Treatment Action Group (TAG) to work on developing a cure with scientific institutions and pharmaceutical companies. Through his research, conversations with government officials and scientists, and street protests, Staley was one of the most influential activists in finding treatments for AIDS.

  5. 5. Ady Barkan

    Although many strides have been made in disability rights, the movement is an ongoing process. People with disabilities are still fighting for better healthcare, accessibility, and inclusion. Ady Barkan is one of those activists; he is one of the main players in today’s conversations about healthcare and has spoken to numerous 2020 presidential candidates about what they will be doing for the disabled community. He was diagnosed with ALS and has spent the past three years fighting against cuts to Social Security, Medicare, and Medicaid. In an interview with the New York Times, Barkan got candid about his terminal diagnosis: “‘As my voice has gotten weaker, more people have heard my message. As I lost the ability to walk, more people have followed in my footsteps.’”

As with every social movement, there are many people who make transformation possible—some whose names are remembered and some whose impact will only be known through the changes they have left behind. If you have the chance to take Disability and the Media, I cannot recommend the class enough. Even if you don’t take the class, I encourage you to further research these names and learn more about the other people who have impacted the disability rights movement. Although this may not be a topic we’ve read about in history books, it’s our responsibility to educate ourselves about the strides this group has made and become allies for the present and beyond.