Five years ago, Lori Long’s boyfriend asked her to marry him. 

For Lori, it was a dream come true. She has a significant disability – an autoimmune system that results in painful fractures in her spine, frequently leading to expensive hospital stays. Given her condition, she wasn’t sure she would ever marry. 

And now, five years later, Lori and her boyfriend, Mark Contreras, are still waiting. Not long after her engagement, she learned that marrying her fiancé, who does not have a disability, would mean completely losing her Social Security disability benefits as well as Medicaid. For Lori, this is no small thing – she faces hospital stays that run $50,000 per visit. 

Lori, who recently shared her story with NPR, is trapped by what advocates in the disability rights community call the “disability marriage penalty,” a series of Social Security rules that trigger reduction or complete loss of disability benefits for otherwise qualified individuals when they get married. 

“The disability marriage penalty punishes people with disabilities in the U.S. who get married by stripping them of disability benefits such as Social Security benefits and Medicaid,” writes the World Institute of Disability (WID), an advocacy group. “The clause has remained a part of the benefits policy for years, affecting many thousands of people with disabilities. Consequently, marriage rates among Supplemental Security Income (SSI) recipients are half that of the general public.” 

WID reports that for years, happily married individuals with disabilities have been filing for divorce simply to gain access to health care and benefits. Citing figures from the media firm OZY, the group says that between 2009 and 2019, nearly 1.1 million Americans with disabilities got divorced, compared to 593,000 who got married. “Roughly twice as many people with disabilities got divorced than married,” the group notes. 

Lori and her boyfriend’s plight drew the notice of her congressional representative, Rep. Jimmy Panetta (D-CA). He has filed the Marriage Equality for Disabled Adults Act in the U.S. House. It would ensure that people like Lori never have to choose between health care and marriage. 

“She inspires me, and she inspired me to write this bill,” Panetta told NPR. “We just feel that’s an antiquated and borderline cruel law that should be changed.” 

The bill has drawn support from advocates. Among them: Bethany Lilly, Senior Director of Income Policy at ARC. “Across the country, many people with disabilities are unable to marry because of outdated rules,” Lilly said in a statement distributed by Panetta’s office. “The Marriage Equality for Disabled Adults Act is an important step towards marriage equality for people with disabilities and we strongly support this bill.” 

Also adding her support was Elaine Lewis, Staff Attorney at the Disability Rights Education & Defense Fund. 

“Anyone can fall in love,” Lewis said. “Unfortunately, if you’re disabled (or fall in love with someone who is) odds are you’ll be unfairly penalized rather than celebrated for daring to attempt something many non-disabled people take for granted.” 

Panetta’s legislation is not the first to target the disability marriage penalty. Somewhat overlapping legislation – the Supplemental Security Income Restoration Act – was filed last June in the Senate by Sen. Sherrod Brown (D-OH) and in the House by Reps. Raul Grijalva (D-AZ), Jan Schakowsky (D-IL), and Elissa Slotkin (D-MI). 

As for Lori and her fiancé? They still hope and plan to get married – if only the Social Security Administration’s rules can be modernized. 

“It makes no sense from a logic viewpoint,” Sen. Brown said of the marriage penalty. “It makes no sense from a moral viewpoint. It makes no sense from a religious viewpoint.”