By Katie J.M. Baker and Heidi Blake
Marie was in her 30s, not a rebellious teenager. Her friends knew her as a gregarious woman who expertly applied thick winged eyeliner behind her glasses, unafraid to stand out. But due to Marie’s intellectual disability, her father, Jim, had ruled her life for 11 years as her legal conservator. Marie knew she needed assistance with things like budgeting and making medical decisions, but she wanted to call the shots. “I need help with life!” she’d later say. “But I want them to show me, not do it for me.” In recent years, she had assembled a network of lawyers, family members, and others who shared her belief that she was capable of so much more. That’s why Marie was in the locker room, whispering to them on the phone. She was plotting her steps toward freedom.
In court filings, Marie and her supporters would accuse Jim of controlling her hard-earned money, forbidding intimate relations with boyfriends, isolating her from people he disliked, and verbally abusing her, calling her “stupid” and “fat.” He had relocated her from city to city as he chose and wanted to move her out of California altogether. Marie said the older she got, the more she craved independence, but every attempt to claim it was held up as proof that she didn’t deserve it.
“Everything was taken away,” Marie told BuzzFeed News. “A little bit every year.”
Jim told BuzzFeed News he loved his daughter, but that for someone in her situation, the world was full of hazards and people looking to take advantage of her.
“My job is to protect her and put her on the path that she can succeed as best as she can. And I think I've been doing that,” he said.
Jim said he had never been cruel to Marie and had given her the best possible quality of life. As for the limits he imposed, they kept her from mistakes she would regret. Jim said he didn’t take Marie’s accusations personally, even while disputing many of them. “I don’t blame her,” he said. “I’ve never blamed her. This is her disability, for heaven’s sake.”
Dozens of interviews and a review of hundreds of pages of court documents cast a light on the challenges that many families face in deciding the best way to support someone with disabilities. For Marie and Jim, it came down to a fundamental conflict about what Marie was capable of and who was best suited to help her achieve it, but also, more broadly, whether everyone has the right to self-determination.
Marie was intent on taking her chances. “I don’t care how long it takes,” she’d later say. “I’m going to keep doing it, fighting the conservatorship.”
Marie Bergum at the thrift store where she works, outside Watsonville, California.
Victoria Will for BuzzFeed News
America’s guardianship system is designed to protect people so
incapacitated by a mental or physical disability that they cannot make
any decisions for themselves. BuzzFeed News recently exposed
the lucrative industry that has arisen around it, wielding tremendous
power with little oversight and swallowing up people who say they should
have control over their own lives.
Experts said it can be particularly hard to obtain freedom from guardians (known as “conservators” in California) who are family members. The #FreeBritney movement has drawn international attention to the conservatorship of Britney Spears, but though her celebrity is exceptional, her predicament is far from unique. Marie said she felt “just like her” — a thirtysomething Californian who has fought mightily to break her father’s control.
Family guardianship is especially common among people with intellectual and developmental disabilities. Although it is meant as a last resort, many parents of children with disabilities seek guardianship as soon as they turn 18, often because schools present it as the only way to ensure their care. The National Council on Disability calls it a “school-to-guardianship pipeline.” Disability rights lawyers say they regularly receive panicked calls from parents who didn’t realize they had signed their adult child’s rights away.
“Years later they regret it,” said attorney Viviana Bonilla López, who recalled a 10-minute hearing granting a parent guardianship over an adult son. Afterward, the parent asked when they could register him to vote, not understanding that he had just lost that right. Once granted, a guardianship can be hard to dissolve, even if parents wish to do so.
Court records describe frightening stories about family guardianships, from a man with quadriplegia who died with bone-deep bedsores after years of parental neglect to a man with a mental illness whose mother slit his throat with a box cutter.
Overwhelmingly more common are cases like Marie’s, where at stake is what some call the “dignity of risk”: the right to make choices freely, good and bad, to learn from and live full lives. For those who need support, there are options that are less restrictive than guardianship or conservatorship, such as “supported decision-making,” which enables people to construct their own support networks instead of having someone take over the person’s life and make their choices for them. Disability rights experts say that everyone, especially young adults, deserves the chance to learn from past missteps.
“The notion that we are who we will always be at 18 is wrong,” and typical of the double standard applied to people with disabilities, said attorney Zoe Brennan-Krohn, a member of the American Civil Liberties Union’s disability rights program who worked on Marie’s case.
“Think about what you were like as a teenager,” she said. “What if a judge assessed who you were and said you’d never be able to grow or change, or accomplish anything more?”
Marie (right) in an undated photo.
Courtesy Marie Bergum
When Marie was a 2-year-old growing up in Michigan, she
contracted meningitis, which left her with an intellectual disability.
An IQ test she took shortly after she was placed in guardianship put her
in the borderline intellectual functioning range. Marie lived a fairly
independent life similar to that of other teenagers, she and her mother
said, taking the bus to a job at McDonald’s where she helped work the
cash register, cooking at home, and taking care of the dogs.
Advocates have questioned the usefulness of IQ scores, since they measure only certain skills and don’t factor in the chance someone has to develop them. Marie always felt her test results, which played a role in her guardianship determinations, didn’t reflect her true abilities. “I’m smart in so many ways,” she said. “I just have a different way of learning.”
Marie’s parents were divorced and in 2007, when she was 21, her father agreed to take her in, offering a change of scenery. Her mother, Cathy Caldwell, said she was surprised that Jim applied for a full guardianship and didn’t realize it would enable him to control all their daughter’s life decisions indefinitely. If she had known about other options, such as becoming Marie’s Power of Attorney, she would have done that instead, she said.
Jim said Marie consented to the guardianship, but she told BuzzFeed News she did not understand what it fully entailed; the court records are unclear. Her father had promised her freedoms, Marie said, but she soon felt that he set unfair limits, beginning with her social life.
Like many young adults, Marie didn’t always have the best taste in guys. There was one who at first everyone in the family liked — Jim even took him on a family vacation — but who stole Marie’s debit card. Marie’s Aunt Nancy would later testify that her own daughters, who don’t have developmental disabilities, acted out in some of the same ways as Marie. The behavior was “all part of normal child-rearing,” she said.
But
the incident stuck with Jim and his supporters in the family. A decade
later, they were still citing it as part of their evidence that Marie
needed his protection. (Click to continue reading)
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