Eva

As Republican leadership seeks to undermine the Affordable Care Act and impose cuts to Medicaid, Eva’s story reminds us how critical LTSS are in allowing people with disabilities to live independently in the community and pursue meaningful work.

Eva Sweeny is a gender queer woman in her thirties who resides in Pasadena, California. She is a non-verbal wheelchair-user due to quadriplegic spastic cerebral palsy and her list of professional and personal accomplishments seems to get longer by the minute.

Her most recent professional success is her role as a Consultant for the hit TV show on ABC, Speechless. One of the main characters on this program is non-verbal teen with a physical disability that is portrayed by an actor with a physical disability. Eva’s job is to make sure that the character is being represented in an authentic fashion and the storylines are not inadvertently ableist. In addition to being a Consultant on the show, Eva’s letter board that she uses to communicate was the inspiration behind the communication system used by the disabled character.

Eva acknowledges that a factor in her success is the support of her Aides, also known as Personal Care Attendants or PCAs. This vital service that she relies on is made possible because of Medicaid-funded home care services, also referred to as Long-Term Services and Supports (LTSS), which are offered through the California Department of Developmental Services. She finds her Aides on Craigslist and also through home health agencies. Without these invaluable individuals to assistance in helping her with the basic necessities like bathing, eating, and getting to work on time, she would not have the freedom to pursue her goals and succeed.

Since Eva’s Aides are such an integral part of her day-to-day life, it makes sense that her relationships with them sometimes becomes the focus of her work as a writer, producer, and filmmaker.

In 2012 Eva wrote and produced a lighthearted yet down-to-Earth documentary entitled, Respect: The Joy of Aides. This short film serves as an excellent educational tool for both Aides and those who employ them. Plus, her fun and witty personality shine through from the beginning to the very end, in which she is ‘walking’ her dog with the assistance of an Aide.

Before she delved into film and television, Eva authored her first book called, Queers On Wheels. One valuable topic she addresses in this book is the importance of having an Aide who is open-minded and accepting of having a queer client. Eva has traveled the country promoting Queers on Wheels and enjoys teaching workshops based on her book’s content.

Eva is always pushing herself forward and setting goals as fast as she reaches them. There are two major factors that fuel her determination. First, all those who have told her that she can’t or is unable to live the life she chooses, compels her to prove them wrong. Second, in recognizing that many talented people with disabilities are handed a similarly grim outlook on life, she plans to become more involved in advocacy and continue to promote positive representation of people with disabilities in the media.

Consumer Stories

The needs and experiences of health care consumers — particularly people in marginalized or low-income communities or with complex needs and significant disabilities — are the driving force of the Center’s work. Documenting and amplifying patients’ real-life health care situations, in their own words, is central to our ability to create a health care system that works for all of us. Click below for stories from some of the consumers we work with.