People with disabilities often must speak up for “dignity of risk”: the
right to make choices freely, good and bad. This is Marie's story.
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.
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.”
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