Disability and marriage have an especially fraught relationship in American history.
Originally published by The 19th
On Sunday, Britney Spears announced her engagement to her longtime boyfriend, Sam Asghari. Spears’ Instagram account appears to be on hiatus, but a defiant announcement remains on Asghari’s account – a photo of Spears and Asghari kissing, their faces hidden behind Spears’ outstretched, adorned ring finger.
While it might look like an ordinary celebrity announcement, it’s actually much more. Spears is claiming a right stripped of her under her conservator-ship: the right to marry.
Conservator-ship is a legal arrangement in which someone, usually a family member, is appointed by a judge to manage the finances or daily life of another person due to incapacity. While the specifics of conservator-ship, sometimes called guardianship, can vary from state to state, the arrangement can be extreme. Disability advocates describe conservator-ship as a “civil death.”
Spears has been under the conservator-ship of her father, Jamie Spears, since 2008. While he recently petitioned to end the conservator-ship, her legal situation remains unchanged. Under the terms of her conservator-ship, Spears does not have the right to choose who she may spend time with, let alone engage with romantically.
It’s not impossible for people under conservator-ship to marry, but they rely on the permission of their conservator. This is the case for Heather Hancock-Blackburn, 37, and her husband, Craig Blackburn, 41. Both have Down syndrome and are under the conservator-ships of their respective parents. Hancock-Blackburn is a server at Not Your Average Joe, a café in Oklahoma City. Blackburn is an equipment manager for the New Orleans Pelicans. They met at a Down syndrome conference in St. Louis, and Blackburn proposed in 2007. First, he took Hancock-Blackburn out to a candlelit dinner. Then, he took her to a room full of their friends, family and colleagues from the Down syndrome community. “Craig put me in the center of the room. He grabbed me by the hand and said, ‘You had me at hello,’ and that’s when he dropped down on one knee,” Hancock-Blackburn said.
But even though Hancock-Blackburn and Blackburn have their parents’ approval and consent, they’re still not legally married. That’s because they risk no longer qualifying for necessary services if they make it official. This is true of most if not all people receiving home care services through Medicaid. Disability advocates call this the “marriage penalty.” As a result, they live separately. They travel to see each other frequently. “It gets harder every year because I miss him so much,” Hancock-Blackburn said.
The National Down Syndrome Society has been advocating for a federal bill that may help bring them together, the Marriage Access for People with Special Abilities Act. But the legislation is limited in scope: It would serve only people with intellectual and developmental disabilities. People with physical disabilities and chronic illness would still be subject to the marriage penalty. A separate bill, the SSI Restoration Act of 2021, would abolish the marriage penalty for a wider array of people with disabilities, including senior citizens. The text of the SSI Restoration Act could be folded into the federal spending bill Democrats are working to pass this year.
Neither the Marriage Access for People with Special Abilities Act nor the SSI Restoration Act of 2021 would allow people under conservator-ship to date or marry who they choose. Britney Spears, who is worth an estimated $60 million, does not need to rely on Medicaid for anything. But Spears is still subject to the stripping of her civil rights under conservator-ship, said Dr. Jasmine Harris, a professor at the University of Pennsylvania’s Carey Law School.
“Does the Constitution say there’s a right to marry? It’s not directly in there,” Harris said. “But there is an indirect argument through which the right to parent, the right to procreate, come from the fundamental rights in terms of liberty and the choices we can make.”
Disability and marriage have an especially fraught relationship in American history. In the early 20th century, more than 30 states had laws prohibiting or limiting disabled people from marrying.
Attitudes toward disability have improved since the peak of the Eugenics Movement in the 20th century, but the idea that disabled people should not marry persists. Beyond the marriage penalty, Harris pointed to the Supreme Court case Lawrence v. Texas (2002), which helped overturn sodomy laws in the United States and paved the way for a later decision on gay marriage. In the majority opinion, Justice Anthony Kennedy wrote that the decision did not encompass “persons who might be injured or coerced or who are situated in relationships where consent might not easily be refused.” That includes people under conservator-ship.
“Even in [Lawrence v. Texas] where we’re all celebrating and there’s a huge victory for advocates, there’s a carve-out for disability,” Harris said.
Conservator-ship reform has been slowly progressing over the past decade, but Harris said it’s really picked up steam since Britney Spears gave shocking testimony about her own conservator-ship in June. Her visibility and platform have brought unprecedented attention to the issue.
Conservator-ship is “this system that’s hidden away,” Harris said. “… At some point, the privacy became a weapon and was no longer a shield.”