Lori Long and Mark Contreras met on Match.com in November 2015. For Long, their first date a few weeks later at Tarpy’s Roadhouse restaurant in Monterey, California, was a big gamble.
“We really hit it off after the first few emails,” she says. Before meeting him, she thought it might be uncomfortable to tell him that she has a spinal condition that requires her to walk hunched over with a cane. But she didn’t want to seem like she was hiding anything, so Ms. Long, 50, decided to open up before the date.
Contreras, 51, wouldn’t have minded if she hadn’t told him beforehand. Their email connection was special to him, too. He skipped the usual casual coffee date and invited her to dinner because he was drawn to her personality as much as her photo. “I told her, ‘I think we’d work out,'” he said. “And we did.”
Long nearly broke his heart two years later. Within weeks of the Tarpeys dating, they knew they’d found their forever partners. But three months after Contreras proposed at their Salinas, Calif., home in December 2016 and Long joyfully replied “yes,” Long spoke to him. “I told him, ‘Mark, we can’t do this life together,'” Long said.
She still wanted to marry him, but not if it meant giving up the medical benefits she relies on to survive.
Long has been mired in a government quagmire. She was diagnosed with ankylosing spondylitis at age 15, a condition that causes broken bones and sometimes forces her to use a wheelchair. As a teenager, she said, she watched her family struggle financially to pay for her medical bills the first time she got sick, even though she had private insurance at the time.
She is considered a “disabled adult child” because she is eligible to receive Social Security benefits through a program for adults who became medically disabled before age 22. This designation, known as DAC, applies to 1.1 million Americans, according to the Social Security Administration’s website.
People who qualify for benefits generally can’t keep their benefits if they marry someone who isn’t disabled or retired. (For a short time after same-sex marriage became federal law in 2015, marrying someone of the same sex was also a workaround to avoid losing benefits; it took a while for the Social Security Administration to change the policy language from “husband and wife” to “spouse.”)
Long argued that the marriage provision was based on outdated ideas that marginalized people with disabilities. “When they wrote the Social Security Act, they didn’t think that young people with disabilities would be potential marriage partners,” Long said. “They didn’t think that people with disabilities have the same dreams and hopes as everyone else, which we do.”
Long and Contreras, an accountant for the Sun Street Center, a Salinas nonprofit that provides education to prevent alcohol and drug addiction, are still engaged, but they can’t afford to marry if they lose Long’s benefits; adding him to their health insurance would be cost-prohibitive, and it doesn’t offer the same kind of coverage as Medicaid.
Aside from her $1,224 a month DAC stipend, Long’s only source of income is a part-time sales job at a HomeGoods store in Sand City, California, where she makes in the teens an hour (the store won’t disclose wages).
But Long and Contreras remain committed to being legally recognized as a married couple. When Long learned about the marriage penalty in March 2017 and told Contreras about it, she gave him what she called a “near perfect” response.
“He said, ‘Lori, we’re going to work this out,'” she says. “He said, ‘I loved you yesterday, I love you today, and I’ll love you tomorrow.'” They’ve been working on it ever since.
And they’re not alone: Long is part of a national network calling for changes to Social Security law regarding marriage, which includes not only DAC recipients like her, but also the larger group of disabled Americans (about 4 million people) who receive Supplemental Security Income (SSI).
In September 2019, Long contacted Rep. Jimmy Panetta, a Democrat representing California’s 20th congressional district, who introduced the Disability Marriage Equality Act earlier this year, which includes a provision called “Lori’s Law” that would eliminate DAC marriage restrictions.
California Senator Anna Caballero also introduced a state resolution, which passed in August, calling on the federal government to lift the DAC’s marriage restrictions.
“This resolution doesn’t change federal law,” said Aesha Elaine Lewis, an attorney with the Disability Rights Educational Defense Fund. “It’s simply California saying, ‘Congress, we support Lori’s Law and we want you to pass it.'”
Change at both the state and federal levels is a “real possibility,” Lewis said, but “it’s going to be a long, difficult journey.”
Lewis added: “The complex bureaucracy that delivers essential services and supports to people with disabilities is piecemeal and based on outdated assumptions about marriage, paternalism and a limited understanding of the full and vibrant lives that people with disabilities are capable of living.”
It’s hard to count how many couples choose to remain single because of the DAC and SSI marriage penalties. Lewis said all recipients are affected, whether they’re in a romantic relationship or not. “They are affected because these penalties affect their choices about whether and with whom they pursue romantic relationships,” she said.
For example, Gabriela Garbero of St. Louis feels her right to marry is taken away every day.
Garbero, 31, was born with a rare muscle-wasting disorder called spinal muscular atrophy type 2. She has used a wheelchair since childhood. “Basically, your brain tells your muscles to move, but they don’t listen,” she says. Garbero receives a monthly Social Security disability check of $1,150.
But it’s not just the prospect of losing that money if she marries her non-disabled fiancé, Juan Johnson, 28, that keeps her from setting a wedding date. Garbero qualifies for SSI as well as SSDI, and she needs to be designated for SSI to continue receiving health care. “SSI is my gateway to qualifying for Medicaid,” she says. “Medicaid is what keeps me alive.”
Garbero graduated from St. Louis University School of Law in 2021. She plans to take the Missouri bar exam in 2023 and is writing a book about systemic oppression based on disability. When she got engaged to Johnson on Jan. 1, 2021, Garbero did some math. She calculated that if she gave up Medicaid when they got married, it would cost her $100,000 to $200,000 a year to find a home health aide to care for her when Johnson, who works in technology, is unable to help her get around and take care of her basic needs.
Garbero said that while she is eligible for health insurance as her husband’s spouse, “it’s completely inadequate to cover my health needs.”
“So unless one of us wins the lottery or starts making $500,000 a year, there’s no wedding,” she added. “Marriage is like a cultural club that disabled people aren’t allowed in.”
A ray of hope is beginning to appear.
On February 12, disabled Pittsburgh residents Caitlin A. Carr and Jonathan Heidenreich held a self-marriage ceremony at Coffee Tree Roasters. Carr, an SSDI recipient who also receives Medicaid and Medicare, found a way to keep receiving benefits that help treat Ehlers-Danlos syndrome, a rare disease that affects connective tissue and forced her to quit her job as a registered nurse in 2017.
In January, the Pennsylvania General Assembly implemented a bill passed in 2021 that expanded eligibility for a state program called Medical Assistance for Disabled Workers. The change allowed Carr, 35, who now works from home 10 hours a week as a nurse educator, to keep her Medicaid as a married woman. Before the new law, Carr and Heidenreich’s income threshold was above the poverty line, making it impossible for them to qualify for Medicaid through the state program.
Heidenreich, 31, a high school English teacher who quit his job to stay at home with Carr during the pandemic and now works in mortgage lending, proposed marriage to him in 2019 after a year of dating.
Heidenreich considers his wife and others who helped convince the state to change the program heroes. “They made sacrifices, they advocated very hard and they pushed themselves despite their limited physical abilities,” he said.
Carr plans to continue her efforts. “Trapping us in forced poverty and preventing us from starting families sends a message to people with disabilities that we are not worthy of the connections that other people have,” she said. “The next step is to change federal law, and we intend to do this piece by piece to ensure that no one is left behind.”
Audio produced by Parin Behrooz.