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Kaamilah Gilyard

Kaamilah Gilyard always dreamed of becoming an actress. Just when she was getting ready to show the world her talents, she was diagnosed with Lupus, a chronic autoimmune disease that causes the immune system to attack the body. Her journey with Lupus has not been easy and has affected every aspect of her life, including her acting, education, job security, family, and relationships. Kaamilah used the diagnosis as motivation to prioritize her health. Kaamilah says she is a spiritual person, and believes that “God gives His hardest fights to His strongest warriors.” She is one of them, fighting not just for herself but for others with Lupus as well.

Kaamilah’s advocacy work started while she was hospitalized for more than a month. After she recuperated with at-home care, she contacted the Lupus Foundation of Pennsylvania, and they connected her with a local foundation. She spoke to State representatives and let them know that more research funding was needed for Lupus. She made it her personal goal to meet them at the State Capital, saying “I found my voice and have not shut up since.”

Kaamilah has visited Washington, D.C. on several occasions to speak with Senators and Representatives to push bills through. She was the inaugural speaker at the Congressional Lupus Caucus in 2012. She also spoke in Albany, New York, to declare May National Lupus Awareness Month. She has worked with the FDA, the Lupus Research Alliance, and the Multicultural Lupus Taskforce to get people of color and underrepresented communities involved in clinical trials. [continue reading…]

Denise Sherer Jacobson

The summer I was eight, I was sent to a sleep-away camp for the month of July. The girls slept in a big dormitory, and my bed was in the center aisle. I have only one other memory about the camp—just one incident that has stayed with me all these years: The time my bed wasn’t made!

I can’t recall why it didn’t get made during the day. But by the time we were ready to go to sleep at the end of a gusty, stormy day, a thick layer of soot and dust covered the white sheet. My counselor scowled when she pushed my wheelchair over to the bed and saw the filthy mess, annoyed that she had extra work to do. She began swiping the dirt over the bed’s edge, and I, trying to help, started to do the same.

“Stop it!” she reprimanded sharply. “Get your hands away now so I can clean this up!”

I recoiled, biting my lip to keep from crying. She hadn’t even seen me as capable of wanting to help. [continue reading…]

As a person with a disability, I understand the challenges of air travel and the importance of proper accommodations. Recently, I had an experience with a well-known airline that left me feeling disregarded and mistreated.

I planned to attend the Slamdance Film Festival in Salt Lake City as the founder of the Unstoppable Program, a film program dedicated to supporting and elevating filmmakers and content with/about disabilities. As someone diagnosed with sickle cell and pulmonary hypertension, I require a Personal Oxygen Concentrator (POC) for breathing assistance. To ensure I could travel safely, I made prior arrangements for wheelchair assistance and oxygen needs with the airline I was traveling with.

However, upon arriving at the airport, I was met with resistance from airline agents. Despite having an FAA-approved POC, they informed me that I needed a prescription from my doctor to prove my need for oxygen and six backup batteries for my POC, which I had already purchased at great expense. I was then made to complete a form for a company called Oxygen2Go about my POC, and my wheelchair was pushed into a corner on the other side of the airport, leaving me ignored for hours about my status to fly. In the end, the airline refused to let me fly, causing me to miss the festival’s opening night.

This experience left me feeling unseen, chastised, abandoned, and an unnecessary burden no one wanted to deal with. [continue reading…]

As a fourth-generation Mexican-American from Southern California, Cesar Chavez Day has become a day for me to honor my ancestors and living relatives who worked up and down the state in packing houses, lemon groves, and strawberry fields. Given that the holiday also falls at the tail end of Women’s History Month, my thoughts are inevitably centered on all the women in my family who toiled in the shadows so others could have greater opportunities.

My family matriarch, Refugio “Cuca” Cordova de Marquez, was an indigenous woman from Jalisco. She was married as a teenager and followed her husband north, where she was eventually able to purchase her own property after becoming a widow. After decades of agricultural work, she developed tuberculosis and diabetes.

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Washington, D.C., March 26 – As we celebrate Women’s History Month, RespectAbility recognizes the important contributions made by women and people of other marginalized gender identities this month, every month, and throughout the history of the United States.

22 Million Women Live with Disabilities in the U.S.

The Census Bureau estimates that there are, in total, more than 61 million Americans living with some form of disability. It is important to note this includes more than 22 million women in the United States. There unfortunately is a lack of data regarding non-binary people with disabilities, so these statistics only include people who identify as women.

In fact, those who identify as women report higher rates of disability than their male-identifying counterparts. According to the most recent Census Bureau disability data, released by the Institute on Disability at the University of New Hampshire, 13.3 percent of women living in the community (not institutionalized) in America had disabilities, compared to 12.8 percent of men in America who reported a disability in 2021.

Despite significant gains across multiple sectors of American society, disabled women still face worse employment outcomes than men with disabilities. Out of approximately 10.8 million working-age women with disabilities, only 39.3 percent had jobs, compared to an employment rate of 42.2 percent for 10.5 million working-age disabled men. [continue reading…]

This past Saturday, Judy Heumann, a legendary changemaker and advocate for disability rights, passed away after a brief time in the hospital. Judy’s website shared the news of her passing and highlights of her life’s work: “Judy was at the forefront of major disability rights demonstrations, helped spearhead the passage of disability rights legislation, founded national and international disability advocacy organizations, held senior federal government positions, co-authored her memoir, Being Heumann, and its Young Adult version, Rolling Warrior, and was featured in the Oscar-nominated documentary film, Crip Camp: A Disability Revolution.”

Judy was fighting for disability inclusion right until the end. Just a few weeks ago, she did a webinar with RespectAbility to kick off Jewish Disability Awareness, Acceptance, and Inclusion Month. Most of our team had the chance to meet and learn from Judy over the years, and all of us have benefitted greatly from her work. Below, we’re sharing a few notes from our team about what Judy meant to us as an advocate, friend, partner, and colleague. We’re also sharing information on the memorial service happening this Wednesday. Several members of our team will be in attendance at the memorial. We strongly encourage those who cannot make it in person to watch the livestream.

We mourn Judy’s passing, and keep her family, friends, and the rest of the disability community in our thoughts. We won’t stop until the world she envisioned becomes a reality. May her memory be a blessing. [continue reading…]

Park City, Feb 5 – Feature-length films that premiered at Sundance such as Is There Anybody Out There?, Still: A Michael J. Fox Movie, and The Tuba Thieves, as well as a number of shorts, explicitly included elements of disability and deafness throughout. However, several additional films featured casual inclusion of disability, which also helps to normalize having a disability in society.

For example, a teenage camper in Theater Camp uses a power wheelchair. We see him both in a montage while auditioning for a show, and later rolling through camp. He is portrayed similarly to other campers. In Slow, contemporary dancer Elena (Greta Grinevičiūtė) meets Dovydas (Kęstutis Cicėnas), who’s assigned to interpret for her class of deaf youth. While the film is not about this class but rather their relationship, the casual inclusion of this class helps normalize deaf students. In Magazine Dreams, aspiring professional bodybuilder Killian Maddox is a caregiver for his disabled grandfather. In a documentary about Little Richard, viewers learn that he had limb differences, mental health conditions, and later on in his life, became a wheelchair user. And in Chanshi, a series about a young Jewish Orthodox woman finding herself, mental health is discussed.

With one-in-five people having a disability in the U.S. today, the lack of representation – just 2.3 percent of characters in the 100 top-grossing films of 2019 and 8 percent in family films – means that millions of people are unable to see themselves reflected in media. While none of the films mentioned above are about disability, the casual inclusion of disability in them is important. [continue reading…]

Last year, former RespectAbility Apprentice Christina Lisk interviewed Roy Payan, the first-ever recipient of the Justin W. Chappell Memorial Award. Nominations are now open for the 2023 Justin Chappell Memorial Award and the 2023 Steve Bartlett Award – learn more!

Read Transcript

Park City, Jan. 19 – With one-in-five people having a disability in the U.S. today, the lack of representation – just 2.3 percent of characters in the 100 top-grossing films of 2019 and 8 percent in family films – means that millions of people are unable to see themselves reflected in media.

The 2023 Sundance Film Festival (January 19 – 29) will provide an opportunity for audiences with various disabilities to see themselves represented – both in-person and virtually.

This year, several films feature disability in the plot, including Is There Anybody Out There?, Sometimes I Think About Dying, Slow, The Eternal Memory, The Tuba Thieves, To Live and Die and Live, Still: A Michael J. Fox Movie, Fairyland, Chanshi, Take Me Home, Well Wishes My Love, Your Love, By Water, and Thriving: A Dissociated Reverie, among others. [continue reading…]