This is a plain language version of a story published earlier this year, adapted by Sandy Mislow of the Self-Advocacy Association of New York State.
Marie Bergum wanted the chance to live her own life — and make her own mistakes. Her father said that could not happen.
Marie was in her 30s and had an intellectual disability. As a teenager, she lived a mostly independent life like other teens and took the bus to a job at McDonald’s, where she helped work the cash register. Marie also cooked at home and took care of the dogs.
After her parents divorced, her father, Jim, became her legal guardian.
Marie did not understand what this meant when she agreed to it, and she later decided she did not want her father to be her legal guardian. (In California, where Marie is from, they call legal guardians "conservators," and guardianships "conservatorships.")
She wanted to learn how to do things like budgeting and making medical decisions instead of her father doing them for her. She said, “I need help with life!” and later said, “But I want them to show me, not do it for me.”
Marie worked together with some lawyers and family members who believed she could make her own decisions. She had to be careful that her father did not know about her meetings with them.
Sometimes Marie had to be sneaky by calling her supporters from the gym locker room because she felt she had no privacy at home. This was a risk — she said if her dad found out she was on the phone instead of lifting weights, he would call her a liar or follow her the next time she left the house. Marie said if he knew she was trying to fight for freedom to make her own decisions, he might take her phone away from her.
Marie’s lawyers told the courts that Jim was controlling her money, not allowing her to have sex with boyfriends, keeping her away from people he didn’t like, verbally abusing her by calling her “stupid” and “fat,” and moving her from city to city without including her in the decision. Marie told court officers that Jim did not allow her to have a lock on her door, take public transportation, cook meals, or choose how much money she could spend each week. “He started saying that I couldn’t do things because I wasn’t that smart,” Marie told BuzzFeed News. “Everything was taken away, a little bit every year.”
Jim told BuzzFeed News he loved his daughter, and the world was full of dangers and people looking to take advantage of her. He said, “My job is to protect her and put her on the path that she can succeed as best as she can.” He said his rules stopped her from making mistakes she might later wish she did not make. Jim said that he wanted his daughter to be happy and that being her guardian was the best way to achieve that because she, unfortunately, was not as capable as she thought she was. Jim said many of Marie’s accusations were wrong, but he didn’t take them personally.
There are many more stories like Marie’s. People with disabilities often must speak up for “dignity of risk”: the right to make choices freely, good and bad, to learn from and live full lives. Disability rights experts say that everyone, especially young adults, deserves the chance to make mistakes and learn from them.
Experts say it can be hard to get freedom from legal guardians who are family members. Many parents of children with disabilities get guardianship as soon as the child turns 18 because schools tell them they should. This is called the “school-to-guardianship pipeline.” Even if parents want to end the guardianship later, it can be hard to do so.
There are other options for people with disabilities to get support that do not take away their rights to make decisions. Supported decision-making allows people to choose who will help them make decisions instead of having another person take over the person’s life and make choices for them.
Disability rights experts say that supported decision-making can work for many people with disabilities. Researchers learned that when people with disabilities make their own decisions, they are more likely to have jobs and be healthier, happier, and more involved in their communities. Even the National Guardianship Association said supported decision-making is a “promising” measure that “should be considered for the person before guardianship.”
Marie filed to end her guardianship in March 2018. She wrote, “My human rights are being violated.” Her father disagreed and told the court, “I hate to say this, but it is a proven truth, that I must not only save Marie from outside predators just waiting for an opportunity, but Marie often requires being saved from herself and her own lack of ability to decide what is healthy and safe for her.” The judge allowed Jim to continue having control over Marie’s life.
Soon after, Marie got new lawyers so she could try again to gain her freedom. She created a supported decision-making plan and assigned family members to support her in different parts of her life, such as budgeting, housing, completing job applications, making medical decisions, cooking, making educational plans, and staying safe. This time she won, and the court removed Jim as her guardian.
Marie’s Aunt Nancy, together with a program manager from an advocacy center, will be her guardians for one year. Then a judge will decide if Marie can successfully live without a guardian. The court said Jim can never again be Marie’s guardian. “Jim can’t do anything to me anymore,” she said with a wide grin.
“Be persistent. Your dreams can come true. Don’t let anyone in your family tell you you can’t do things.”
The photograph of Marie Bergum was taken by Victoria Will for BuzzFeed News.