This is a plain language version of a story published earlier this year, adapted by Sandy Mislow from New York State Self-Advocacy Association.
Marie Bergum wanted the chance to live her own life and make her own mistakes. Her father said it couldn’t happen.
Marie was in her thirties and had an intellectual disability. As a teenager, she led a largely independent life like other teenagers and took the bus to work at McDonald’s, where she helped work at 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 didn’t understand what it meant when she agreed, and then decided she didn’t want her father to be her legal guardian. (In California, where Mary is from, they call legal guardians “conservative” and guardianship “conservative.”)
She wanted to learn to do things like budget and make medical decisions instead of her dad doing them for her. She said, “I need help in life! and later said, “But I want them to show me, not for me.”
Marie worked with lawyers and family members who believed she could make her own decisions. She had to be careful that her father didn’t know about her encounters with them.
Sometimes Marie had to be sneaky when calling her supporters from the gym locker room because she felt she had no privacy at home. It was a risk – she said if her father 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 that if he knew she was trying to fight for the freedom to make her own decisions, he could take her phone.
Marie’s lawyers have told courts that Jim controls her money, doesn’t allow her to have sex with boyfriends, keeps her away from people he doesn’t like, verbally assaults her by calling her “Stupid” and “fat” and took her from town to town without including her in the decision. Marie told court officials that Jim didn’t allow her to lock her door, take public transportation, cook meals, or choose how much money she could spend each week. “He started saying 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 that he loves his daughter and the world is 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 do the best she can.” He said her period prevented her from making mistakes that she might later wish not to make. Jim said he wanted his daughter to be happy and that being her tutor was the best way to achieve this because she, unfortunately, was not as capable as she thought she was. Jim said many of Marie’s accusations were false, but he did not take them personally.
There are many other stories like that of Mary. People with disabilities often have to stand up for the “dignity of risk”: the right to freely make choices, good and bad, to learn from them and to live fully. Disability rights experts say everyone, especially young adults, deserves the chance to make mistakes and learn from them.
Experts say it can be difficult to gain the freedom of legal guardians who are family members. Many parents of disabled children 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 the parents want to end the guardianship later, it can be difficult to do.
There are other options for people with disabilities to get support that do not take away their right to make decisions. Supported decision making allows people to choose who will help them make decisions rather than letting someone else take charge of the person’s life and make choices for them.
Disability rights experts say supported decision making can work for many people with disabilities. Researchers have learned that when people with disabilities make their own decisions, they are more likely to have a job and to be healthier, happier and more involved in their community. Even the National Guardianship Association has said that assisted decision making is a “promising” step that “should be considered for the person before guardianship.”
Marie requested the end of 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 not only have to save Mary from outside predators while waiting for an opportunity, but Mary often needs help. ‘to be saved from herself and her own lack. of her ability to decide what is healthy and safe for her. The judge allowed Jim to continue to control Marie’s life.
Soon after, Marie got new lawyers so that she could try to regain her freedom again. She created a plan for supported decision making and assigned family members to support her in different parts of her life, such as budgeting, housing, filling out job applications, making medical decisions, cooking, make educational plans and stay safe. This time she won and the court removed Jim as guardian.
Marie’s aunt Nancy, as well as a program manager at an advocacy center, will be her tutors for a year. Then a judge will decide if Mary can live successfully without a guardian. The court said Jim could never be Marie’s guardian again. “Jim can’t do anything to me anymore,” she said with a broad smile.
“Be persistent. Your dreams can come true. Don’t let anyone in your family tell you that you can’t do things right.
The photo of Marie Bergum was taken by Victoria Will for BuzzFeed News.