Disabled couples are still forced to choose between love and survival—an unjust “marriage penalty” that puts benefits, healthcare and autonomy at risk.
Last month marked 10 years since the pivotal Supreme Court case Obergefell v. Hodges (2015) ruled that same-sex couples can legally marry, reinforcing that marriage is a right rather than a privilege. The case set a legal precedent with ripple effects for many others fighting for marriage equality, including disabled individuals. While disabled couples have been legally able to marry long before LGBTQ+ couples, the Supreme Court ruled in Califano v. Jobst (1977) that the Social Security Act will terminate the benefits of disabled dependents who marry.
Disabled individuals are just one population facing systemic challenges and outright penalties to getting married in the United States, as Allison Raskin explored in her book I Do (I Think): Conversations about Modern Marriage. After the overturn of Roe v. Wade, and the June 27 Supreme Court decision allowing parents to opt out of lessons with books featuring LGBTQ+ characters, legal scholars and queer and trans people alike are worried about the overturn of Obergefell. The legal reasoning used in the Court’s decision puts interracial couples’ protections at risk, as law professor Michele Goodwin shared after the fall of Roe v. Wade.
But for disabled individuals, marriage equality has yet to be achieved—specifically because of the marriage penalty. The issue revolves around Supplemental Security Income (SSI) benefits, which provide critical access to food, housing and healthcare. Some disabled individuals in the United States receive SSI benefits, especially when they are part of the Disabled Adult Children program, determined based on a person’s countable income. If a person marries, Social Security will lump the spouse’s income into the first, affecting how income is determined. When income increases, it means that people may lose part or all of their SSI benefits that are essential for their survival, including food, housing and healthcare.
It’s part of a deeply paternalistic system, disabled activist Dominick Evans writes for the Center for Disability Rights, that views disabled adults as the burden of their parents, and when their parents pass, the burden of the state. When two disabled people marry, their joint income may push them out of qualifying for benefits, and when a disabled person marries a non-disabled person or someone not receiving benefits from the state, the former is deemed the responsibility of the latter.
And it’s not just about marriage. In some states even living together and sharing an address with the person that you love can put you at risk.
It’s called the “marriage penalty,” and as many disabled people have argued, it discourages people with disabilities from marrying, having to choose as shown between marrying their partner or maintaining access to SSI benefits, including life-saving healthcare. As Ayesha Lewis, an attorney with the Disability Rights Education and Defense Fund, shared, it’s not just about making a financial decision—it’s indicative of a wider issue of patronizing disabled adults who are independent and fully capable of loving and committing themselves in marriage.
“These barriers to marriage are patronizing,” she said. “I’ve spoken to a lot of folks across the country, and they see this as an affront to their dignity, humanity and equality.”
It’s part of a deeply paternalistic system … that views disabled adults as the burden of their parents, and when their parents pass, the burden of the state.
Marriage barriers build on a long history of governmental institutions infantilizing and stripping disabled adults of personal autonomy and access to public spaces. In the 1800s, many disabled individuals were incarcerated and segregated in jails or poorhouses and forced to labor under a legal guardianship. This model, as well as special schools for disabled children, later evolved into the mass institutionalization of disabled people that persists to this day.
Although aimed at increasing access to healthcare, they were and are largely overcrowded and infantilize disabled people—and have long histories of institutional workers sexually assaulting disabled children and adults. Also in the 1900s, public decency laws prohibited disabled people from appearing in public, and if they did, removed disabled individuals into poorhouses and institutions without their consent. These practices were part of the Social Purity Movements of the late 19th and early 20th centuries aimed at achieving a purity of body built on ableist thought and through legalized medical violence against disabled individuals.
History of the Eugenics Movement
The eugenics movement—a continuation of the social purity movements aimed at creating a “perfect,” able-bodied, white race—took this further by not only criminalizing disabled bodies in public spaces but also disabled people from marrying and having children.
In 1896, Connecticut became the first state to pass a law preventing disabled people from having sex or marrying, or face the penalty of three years in prison. Other states—Pennsylvania, Kansas, Ohio, Minnesota and others—passed similar laws, eventually culminating in the forced sterilization of disabled adults.
While laws outlawing disabled individuals from having sex and marrying were repealed after the passage of the Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990, forced sterilization remains on the books in several states, allowing doctors to sterilize disabled adults without their consent.
Similarly, sexual education for disabled individuals continues to be deeply affected by eugenics philosophies. A recent study examining the sex education that disabled women receive found that compared to non-disabled women, women with cognitive disabilities were less likely to receive comprehensive sex education. This deeply affects understanding of contraception, consent, and choice. A recent study highlighted how disabled women are 32 percent less likely than non-disabled women to use any contraceptive method, and in 2024, they are more than twice as likely to stop using contraception due to an affordability issue—highlighting how disabled women face systemic barriers to accessing contraception, a vital reproductive right.
Connecting Marriage Equality and Bodily Autonomy
As these studies highlight, this is an issue not just about marriage equality but also about bodily autonomy. It means that many disabled individuals face an impossible question: Remain single and on SSA benefits, including benefits to healthcare vital to their survival … or marry and live with the person they love. This struggle was at the center of the 2024 film Patrice: The Movie.
Patrice Jetter, the star of the film, has diplegic cerebral palsy and other disabilities, navigates wanting to marry her long-time partner Garry who also has cerebral palsy. In the end, they decide that they cannot get married and cannot live together, as both could not afford healthcare—honestly, to live—without SSI benefits. The film highlights how Patrice herself was institutionalized and was labored in a work program for disabled adults where she and others were paid less than minimum wage—a callback to poorhouses of the 19th century.
But as a form of rebellion, in September 2023, Patrice and Garry kicked off the “Disabled Marriage Equality Now!” rally on the National Mall in Washington, D.C., holding a commitment ceremony for 20 couples raising awareness for the “marriage penalty” and calling on Congress to secure their rights. While the couples, including Patrice and Garry, could not marry that day, they expressed hope that they and others would be able to do so in the future.
As a disabled accessibility service provider, I audio described the event for people who are blind or have low vision, and audio described the premiere of Patrice: The Movie at the Kennedy Center this past March. After the event at the Kennedy Center, people gathered to call for disabled marriage equality and enshrining the rights of disabled people during the second Trump administration, which seems determined to make historic cuts to Medicaid. Both were powerful reminders to me, a disabled, queer woman, of how far we still have to go to secure marriage equality on the 10th anniversary of Obergefell.
Legislation to Remove the Marriage Penalty
As Patrice: The Movie highlighted, several lawmakers have proposed bills to remove the marriage penalty.
In 2022, Rep. Jimmy Panetta (D-Calif.) introduced HR 6405, or the Marriage Equality for Disabled Adults Act, eliminating the requirement that any disabled adult receiving benefits be unmarried and the lowering or loss of benefits if a person is or gets married.
This past Valentine’s Day, HR 1389—the Marriage Equality for Disabled Adults Act—was reintroduced to Congress. Sponsored by Rep. Panetta, the bill was referred to the Committees on Ways and Means and Energy and Commerce where it sits right now.
Panetta and the Disability Rights Education & Defense Fund urge people to not only call and write their representatives but also to follow and support legal campaigns, engage with content online, including with disabled content creators like Bloom Jude Novak and Mackenzie Alanna, and most importantly, share this and others stories about disability marriage penalties. More than anything, the problem is visibility and awareness—most Americans do not know that this remains an issue.
Activists have stepped into this gap. Bri, a disabled, queer activist from Central Illinois, who wore a dress embroidered with the words “marriage equality does not exist until disabled people can get married without loosing [sic] benefits” for a November 2024 performance. Bri reflects in the post that they cannot marry their best friend because if they did, they would lose their disability benefits and Medicare. They are choosing between life and love—an impossible choice that few people face.
“It’s time to change,” they conclude.
Similarly, disabled activist Samantha Van Alstyne published a book series to this end titled Sam Wants to Get Married. Alstyne and her partner, Jordan Gigliati, are planning a non-commitment ceremony, but their and others’ fight for legal marriage continues.
“Jordan and I dream of a world where we can marry and still get the help that we need,” Alstyne said. “Wouldn’t that be great?”
