For many people with disabilities, getting married can come with a steep cost: the loss of federal benefits that provide income and health care.
The policy, known as the marriage penalty, affects people who rely on Supplemental Security Income or Medicaid.
“I kind of was thinking, ‘Maybe someday there will be somebody who will love me and want to marry me.’”
BJ Stasio, now a peer mentor and advocate at the state Office for People With Developmental Disabilities, remembers wondering what adulthood would look like after graduating from college. As he began thinking about relationships and long-term plans, he encountered a policy he had never learned about in school.
“I kind of found it by an unfortunate internet search,” he said.
Under current federal rules, when two people marry and combine their assets, couples whose shared assets exceed $3,000 are no longer eligible for Medicaid or Supplemental Security Income.
According to the Social Security Administration, countable assets can include vehicles and money in bank accounts.
The policy applies to people with intellectual or developmental disabilities, people who are blind, and people who are 65 or older.
Stasio said the consequences go far beyond finances.
“The right to share your feelings and your love and your emotions with whoever you choose. That's what's at stake here.”
Advocates say the policy creates legal and personal risks that extend into nearly every aspect of life.
Stephanie Woodward, a disability rights attorney and co-founder of the Disability EmpowHer Network, said couples who avoid marriage to preserve benefits face serious uncertainty, particularly when it comes to housing, inheritance and long-term security.
“There is no inherent right to survivorship,” Woodward said. “It's just a very tangled web that we're weaving that leaves so many people uncertain of what the future holds after they pass away.”
Woodward also said the marriage penalty can leave people trapped in unsafe or abusive situations.
“Women with disabilities are two to four times more likely to be victims of sexual assault and domestic violence as a non-disabled person, and people who are victims of abuse are more likely to acquire disabilities from that abuse,” she said.
The marriage penalty is part of a much longer history of state control over the lives of disabled people.
“A lot of people assume we don't have ... romantic relationships, we don't have intimate or sexual relationships. None of that is true, but there are systems in place that make marriage equality not feel very equal when it comes to the disability community.”Stephanie Woodward, a disability rights attorney and co-founder of the Disability EmpowHer Network
According to PBS, federally funded sterilization programs operated in 32 states throughout the 20th century, targeting people deemed to have “undesirable traits,” including people with disabilities, people with mental illness, people of color and people living in poverty.
Those programs coincided with the eugenics movement and were often framed as public health interventions.
That legacy, Woodward said, continues today through policies like the marriage penalty, shaped by false narratives imposed on disabled people rather than by their lived experiences.
“A lot of people assume we don't have ... romantic relationships, we don't have intimate or sexual relationships. None of that is true, but there are systems in place that make marriage equality not feel very equal when it comes to the disability community,” she said.
Woodward said fixing the policy could be relatively simple, by allowing a person’s assets to be counted only as their own.
A bill in Congress aimed at eliminating the marriage penalty for benefit recipients is currently in committee.
For Stasio, legislative change alone is not enough. He said cultural assumptions about disability, intimacy and independence allow policies like the marriage penalty to persist.
“Nobody should tell you what relationship you should have just to make themselves feel comfortable, because for me, it's been — it was a journey of self exploration and finding out what I wanted for my life, contrary to what people in my life said.
“For me, it's all about dignity of risk and choice, because that's what love and relationships is about, dignity risk and choice.”
