Part three of a three-part series on the challenges faced by LGBTQ individuals with disabilities.
“When President Trump talks about the economy and unemployment being way down, he is not talking about disabled people, he is not talking about Latinx people and he is definitely not talking about disabled Latinx people.”
At 25-years-old, Ximena Dávila has been on what she called an “employment roller coaster” for several years. She said the reasons are a convergence of her gender, ethnicity and disability.
According to the Bureau of Labor Statistics, unemployment for Americans living with disabilities is more than twice the national average.
Lauren Alden of Liberty Resources, Inc. — the Center for Independent Living for the Philadelphia area, which “advocates for and works with Persons with Disabilities to ensure their civil rights and equal access to all aspects of life” — said 16 percent of Philadelphians are living with a disability.
Alden said if people can’t access transportation to or get into buildings where a job might be, they are being shut out of the community at large.
Dávila feels shut out. “I am very hard of hearing,” said Dávila, who identifies as “Deaf and genderqueer.” Dávila said the degree of her deafness has made it difficult for her to find steady employment.
“I want to work, but as soon as I apply for a job and they discover that I can’t hear, I am no longer in the mix,” said Dávila. “They can’t actively discriminate against me, because of the ADA (Americans with Disabilities Act), but ask any Deaf person and they will have the same story — no jobs for us.”
According to the National Institutes of Health, about 15 percent of Americans over 18-years-old (37.5 million) are hard of hearing and a few million are functionally deaf/Deaf.
Dávila has faced numerous challenges as a queer Latinx person living with a disability. Although she was educated at the iconic Pennsylvania School for the Deaf in Philadelphia, she said she always felt she was “living in several different worlds.” In high school, Dávila began to self-medicate to deal with her feelings of isolation as both LGBTQ and Deaf. She said she dropped out of college early in her sophomore year and “dedicated myself to being a full-time addict. It was brutal.”
“No one wants to talk about how hard it is to find community when your community is so ableist,” she said. “And when I say community, I mean every community I am part of — LGBTQ, Latinx, the world. Where is the place for us? I mean it’s not just finding a job, it’s finding where you fit. I am still looking for that place. It can be so lonely, it can break your heart.”
Alden, a lesbian, wife and mother, is dedicated to making recovery accessible to folks living with disabilities because it was so vital to her personally.
“I am able-bodied,” said Alden. “A huge part of my being in recovery is being in service to others.”
Alden said when she began her recovery, she realized how inaccessible the recovery process was for folks with disabilities. “It’s recommended that you go to a meeting every day,” she explained. “But if the meetings aren’t accessible to you, how can you do that?”
“We talk a lot about access to public spaces, but what about access to this kind of help that so many people need and deserve?” said Alden, adding that at LRI, there is always an interpreter on site, as well as physical access for people in wheelchairs.
Dávila said she was fortunate to be able to find help in her own recovery process through friends from the Pennsylvania School for the Deaf, but she said, “If I hadn’t been able to reach out when I bottomed out, I would probably be dead now, lying in some trash heap in Kensington. Things should never get this dire for anyone. I mean it is so hard to get your life back on track when it derails, and if you are disabled, no one is reaching out to you because they don’t even see you.”
Pat and Darcy are coping with a different kind of invisibility than Dávila. The lesbian couple had been partners for nearly 30 years when Darcy started misplacing things. “I knew a certain amount of forgetfulness was normal,” Pat said. “I mean we are getting older. ‘Senior moments’ and all that.”
At 68, Pat, a social worker, and Darcy, 70, an adjunct professor at a local college, had already been discussing plans for their retirement when Darcy’s symptoms started to worsen. Darcy had taken a semester off from teaching to undergo knee surgery. Then things began to spiral.
Pat said, “Sometimes she’d just stop in the middle of a sentence, and look at me like she wasn’t sure where she was, and say, ‘I completely lost my train of thought. What was I saying, honey?’ That’s when I got scared.”
Darcy was diagnosed with the early stages of Alzheimer’s disease in November 2017 and put on a series of medications. The couple was devastated. “I had thought we were about to embark on our next chapter,” Pat said. Her voice broke as she said it’s still hard for her to talk about.
“We had so many plans.”
Alzheimer’s disease affects about 5.6 million Americans over 65. Another 200,000 have early-onset forms of the disease at ages as young as 45. Alzheimer’s is one of the most common disabling diseases among older Americans and the 6th leading cause of death in the U.S. It is also a gendered illness: Almost two-thirds of Americans with Alzheimer’s are women.
Darcy’s age and symptoms make hers a fairly standard case, according to the Alzheimer’s Association. What isn’t so standard is Darcy’s identity as a butch, gender-nonconforming African-American lesbian with a lifetime of avoiding doctors.
“Darcy never liked doctors,” Pat explains. “She always felt she was facing racism and homophobia before she ever even said why she was there.”
SAGE is the country’s largest and oldest organization dedicated to improving the lives of LGBT older people. SAGE notes that, “LGBT older people who receive a dementia diagnosis face a particularly challenging set of circumstances.”
“With the growing prevalence of Alzheimer’s disease and the swelling population of LGBT older adults, we place a priority on examining the intersections of Alzheimer’s disease, sexual orientation and gender identity and expression,” said Dr. Sam Fazio, Director of Quality Care and Psychosocial Research for the Alzheimer’s Association.
SAGE said that there are several areas where “LGBT identities intersect with Alzheimer’s disease: stigma, social isolation, poverty, health disparities, sexuality and sexual expression, barriers to utilizing existing services and living with HIV/AIDS.” SAGE asserts that what’s hardest for LGBTQ people like Pat and Darcy is both accessing care and finding help to maintain engagement in their communities. SAGE said, “Thirty-four percent of LGBT older people live alone and 40 percent report that their support networks have become smaller over time.” In addition, many do not have children to help care for them or family members who are accepting of their sexual orientation or gender identity.
Those living with disabilities make up the largest minority group in the U.S. Disability impacts every age, gender, race, ethnicity and socioeconomic strata of U.S. society.
Some of the LGBTQ folks who spoke with PGN for this series were born with a disability, others through injury or illness. But every single person expressed frustration with access to and isolation from their own queer community as well as the larger community.
Elle Sloan, a disability rights activist, put the issues facing LGBTQ persons living with a disability succinctly. “For many disabled queers who aren’t visibly disabled and in a wheelchair like I am, disability is another closet they have to come out of or that they’ve been forced into.”
She said, “More and more of us are coming out disabled, getting older and becoming disabled. As a community that knows how to fight discrimination, we have the opportunity to support disabled queer and trans people. We need to do that. We really need to do it now.” n
Some names have been changed to protect the privacy of interviewees. For more information about Liberty Resources, Inc., call 215-634-2000 or visit libertyresources.org. For more information about SAGE, visit sageusa.org.