Even the policy wonks on U.S. Rep Jimmy Panetta’s staff couldn’t believe it at first. A constituent from Salinas named Lori Long had reached out for help with a legal conundrum. She’s disabled by a rare autoimmune disease affecting her spine – hereditary ankylosing spondylitis, which happens to make her vulnerable to Covid-19 – and, in 2017, she decided to marry a man she loves. But when Long went to check in with the Social Security Administration, a specialist there warned her not to. The specialist said the law would take away Long’s life-saving disability benefits unless the person she marries is also disabled. Her fiance, Mark Contreras, is not.
“Being told I cannot marry Mark has been absolutely heartbreaking,” Long wrote in a letter she dropped off at Panetta’s office in September. “Learning the reason why has been shocking, even appalling. I find it hard to believe that if race or religion were a part of the equation… that the American people would tolerate it.”
Long says that Panetta’s staff were shocked by her story, too, but they doubted it could be true. To find out, they wrote to the Social Security Administration about Long’s situation. On Feb. 14, the SSA wrote back: “Unfortunately for Ms. Long, she was given the correct information… [her] benefits will terminate upon the marriage.”
Along with some 1.1 million other Americans, Long receives Social Security Disability Insurance under a special program for adults whose medical disability started before they were 22. Recipients must meet certain criteria, including that they not be married to an able-bodied person. In 2018, 3,083 Americans lost their disability benefits because of marriage, according to SSA data.
Long’s grief at not being allowed to marry turned into something else one day last fall. She and Contreras got a wedding invitation from friends. This other couple had gotten engaged after them and were now going to get married before. “Instead of just being happy and saying our day’ll come, it hit us differently,” Long says. “I knew in my heart that I’ve had enough.”
Long sees her case as a systemic injustice akin to the laws that prohibited interracial and same-sex marriage. At age 48, with no background in activism, she has launched a civil rights battle for marriage equality. “This goes against our constitutional rights,” she says.
Using the moniker Lori’s Law, she opened accounts on Facebook, Instagram and Twitter, produced a powerful video on YouTube and launched a petition that is seeking to collect 100,000 signatures. She has done historical research and can quote from the 1967 Supreme Court case of Loving v. Virginia that struck down bans on interracial marriage.
Meanwhile, Panetta’s office is offering sympathy and a promise of future action. “Congressman Panetta continues to work with Lori and others to formulate a realistic and helpful legislative fix or another form of assistance for Lori and others in her position,” spokesperson Sarah Wolman states by email.
The reason for the marriage rule – and why it’s complicated to get rid of – has to do with the historical treatment of disabled people in the U.S., according to Bethany Lilly, the Director of Income Policy at The Arc, a disability nonprofit.
“We built the disability system many decades ago when we didn’t really think about people with disabilities getting married,” Lilly says. “The disability rights movement has come a very long way and the way we think about disability has changed remarkably. We conceptualize it as disability rights, as ‘We should have the same rights as everyone else.’”
Lilly says voices like those of Long’s can help put pressure on the system to change, but the obstacles are substantial. Expanding to disability insurance would mean increased government spending, which many in D.C. will oppose.
For Long and Contreras, waiting any longer is too long. They want to get married and start a family like anyone else.