Disability rights advocate’s decision: TO HELP OTHERS Woman with Down Syndrome wins fight for independence
Jenny Hatch does not like President Donald Trump. This matters, but not for the reason you might think. This matters because the 35-yearold who has Down syndrome decided on her own that he didn’t deserve her support, and if a court case had gone differently six years ago, she would have been stripped of the ability to make even the most basic decisions for herself.
She wouldn’t have been able to use her laptop to read up on current events whenever she wanted.
She wouldn’t have been able, without permission, to meet with friends to talk about her favorite movies or debate the merits of presidential candidates.
She wouldn’t have been able, unless a judge deemed her worthy of an exception, to vote.
That last loss would have hit her particularly hard because she has long been a devout Republican. She has volunteered with local campaigns and speaks about George W. Bush as if he were a family friend.
“I don’t know about Trump,” Hatch tells me when I call her on a recent afternoon. “He’s not a good person. And I just found out that Joe Biden is running for president. He cares about people with disabilities.”
I didn’t call Hatch to talk about politics. It just happens to be one of her favorite subjects. I called her to find out how she was feeling about her latest role: published author.
Six years ago, her Virginia court case opened the way for others with disabilities to fight for their independence. Hatch challenged a guardianship request by her parents that would have allowed them to keep her in a group home, and away from the friends she wanted to live with and the job she wanted to hold. Her attorneys argued at the time that she didn’t need someone to make every decision for her. She simply needed support making decisions.
When Hatch won her case, she became an immediate champion for disability rights. She also became a reminder of what is possible when people are judged by what they can do instead of by what they can’t.
In the years since, she has delivered speeches that have brought audiences to their feet. She has watched an initiative in her name, the Jenny Hatch Justice Project, fight to get others out from under guardianship.
And now she has written the foreword of a book that aims to help people with disabilities across the country live as independently as possible.
“Jenny’s story should be the beginning of the story,” says Jonathan Martinis, who was Hatch’s attorney in her guardianship case. He authored the book, along with Peter Blanck, who served as an expert witness in her case.
“When I met Jenny, she was under a guardianship order,” Martinis says. “She was living in a group home she didn’t want to live in. She wasn’t allowed to go to her church. She wasn’t allowed to go to work. Her laptop was taken away. Her phone was taken away. If you wanted to see Jenny, you had to fill out a permission slip. You had to say when you wanted to see her and what you would do, and you couldn’t talk about her guardianship.”
An ax murderer would have automatically been given the right to talk to an attorney, he says, but he had to request permission from a judge to discuss her case with her.
When the judge finally ruled in Hatch’s favor, granting a one-year temporary guardianship to the friends she wanted to live with, Martinis celebrated the victory and predicted more to come: “For anyone who has been told you can’t do something, you can’t make your own decisions, I give you Jenny Hatch — the rock that starts the avalanche.”
Since then, he says, 10 states have passed laws recognizing supported decision-making as a preferred alternative to guardianship, projects centered on the issue have taken hold in about 40 states, and more court wins have followed.
At the same time, Martinis notes, the number of people under courtappointed guardianship has tripled since 1994, and because schools remain the number one referral source, the most common age for people to fall under it is 18.
“Without choice, we don’t have rights,” he says.
Martinis says the purpose of the book is to give people an easy-to-follow guide so they know how to find the support they need to maintain their independence. The title is, “Supported Decision-Making: From Justice for Jenny to Justice for All!”
Kelly Morris, the friend who took in Hatch when she won her case, says she and her husband, Jim Talbert, didn’t fully know what they were jumping into at the time. Hatch had worked at their thrift shop and they took her into their home after she was injured in a bike accident. When her parents later placed her in the group home, they knew she was unhappy, so they decided to help her fight the guardianship.
“We didn’t even recognize what we were doing,” Morris says. “And, now, looking back, I’m not a religious person, I’m more spiritual, but it was all divine intervention from everybody we met to how the process took place.”
They have now opened a third thrift shop and Hatch helps at the different locations. She still lives with them and has grown close to Morris’ daughter, Jordan, who is 21 and has cerebral palsy. Hatch is no longer under guardianship and Morris says they have talked about moving her into an apartment or building a small house for her on their property, so she can remain close and still have her own space.
“I would love to see her married and have her own life,” Morris says.
When I ask Hatch how she is doing, she repeats several times, “I’m so happy.”
“I am so happy that I get to be with my friends that I care about,” she says, her voice suddenly shaking. “I love Kelly and Jim so much. I don’t know what I would do without my friends.” “Are you crying?” “Happy tears,” she says. She hasn’t yet seen the book, which was just published, but she says she’s excited for her copy to arrive.
Martinis says that after he asked her whether she wanted to write the opening section, he found a handwritten letter from her in his mailbox.
In it, Hatch writes that she hopes her story helps others and that “we all deserve to live a life that makes us happy.”
“When I have help to make decisions I can handle anything that is my mind-set,” she writes. “I choose when I get to go get my nails done or go to the mall or go to the movies. I can go to a restaurant and choose what to eat. These are decisions that most people make every day. I will never forget what Jonathan, and my friends Jim and Kelly have done for me and that makes me feel like a real person.”