CHICAGO — Until she was 13 years old, Palos Park’s Katherine Hamann did not know she had a sister. It took her 13 more years before the two finally met. Today, she is strengthened by a relationship once lost to her, and works as both guardian and advocate for others with intellectual and developmental disabilities.
“I went from being an English major and thinking I was going to teach English to being involved in the disability field,” Hamann said. “It’s been a wonderful life in many ways. It’s been rewarding and enriching for me, all of the people I’ve gotten to know.”
Hamann’s parents had their first child, Margaret Doering, in the 1940s during World War II. She was born with intellectual and developmental disabilities.
“In those days, there was such an aura of shame having a child who was disabled,” Hamann said. “My parents were told by the family doctor that it would be much better for my sister to be institutionalized because she would probably not live past 13. The idea was that she would be a burden on them and it would be hard for them to have other children and that it would be a stigma for the other children if they wanted to have a family.”
Hamann’s parents followed the doctor’s advice and put Doering in state-run care at age 2. The couple had a boy eight years after Doering, Hamann after that and then another boy. Grandparents, aunts, uncles and others were “sworn to secrecy” about the existence of their sibling.
“It definitely was deliberate that we didn’t know,” Hamann said. “We’re not sure that they even wanted to ever tell us.”
But when Hamann was 13, a friend’s mother had a miscarriage. Hamann started to wonder if anything like that had ever happened to her own mother.
“I just asked her if she ever had any other children,” Hamann said. “She just burst into tears.”
She told Hamann that she had a sister. The teen said she was shocked but also excited by the revelation.
“I was kind of thrilled I had a sister, because I always wanted a sister,” Hamann said.
For a long time, Doering still was not part of Hamann’s life. The family did not go to the Dixon State School together to see her, and when the parents eventually started visiting, the children typically only found out after the fact, Hamann said.
“There was a period of about 17 years where no one visited,” Hamann said records show.
When Hamann was 26 and married, she finally met her sister, then 36. Doering has been a constant in her life ever since. Hamann became her guardian and moved Doering closer to the area, despite her parents advising against it.
“They were not enthusiastic about my getting involved with her, because they always felt she was going to be a burden on us in some way,” Hamann said.
‘An alternate universe’
First, Hamann made regular visits to get to know her sister. Doering does not speak or sign, so Hamann had to rely on records to learn more about her life.
“She doesn’t communicate in any conventional way,” Hamann said. “But she does communicate by touch. Over the years, she’s learned to hug me, which is just amazing.”
Hamann said there were constant revelations about Doering’s life in the facility, but maybe none quite as jarring as the scene when they first came face to face.
“When I met my sister, she was in a locked hallway with about 20 people who were just milling around,” Hamann recalled. “That was the activity. There weren’t even enough chairs for everyone. I felt like I’d entered an alternative universe. I had no idea that people were living like this and this could be her life.”
It also struck her how no choice in Doering’s life up until that point was her own. Hamann’s parents had led her to believe her sister was incapable of making them.
“They said she was feebleminded and she should always be in an institution,” Hamann said. “As soon as I met her, she was this spunky little lady. She’s so strong. She’s such a survivor and she has so much personality.”
Hamann started seeing positive changes in her sister as they got together. She moved Doering to Tinley Park’s Howe Developmental Center. Hamann volunteered there for a while and then ended up working there. She ultimately spent 11 years at the facility, doing everything from kitchen work to human resources.
It allowed her to be more involved with her sister, but she also saw firsthand what a state-run facility was like.
“It really wasn’t a good fit for her,” Hamann said. “It wasn’t a very positive environment for her.”
So Doering moved again, this time to a community integrated living arrangement. She has been doing great there for more than a decade, according to her sister.
A little over a decade ago, Hamann was contacted by The Arc of Illinois, an organization that empowers people with disabilities to fully participate in community life. The organization heard her story and was looking for someone who could be compassionate and encouraging while talking to families going through similar situations. Hamann has worked for the organization since 2010, becoming the director of its family transition project.
The organization, which Hamann calls a great resource, advocates for choices for people with intellectual and developmental disabilities, as well as fully funded services to help them live independent and fulfilling lives.
The Dixon State School and Howe Developmental Center have been shut down by the state, part of a decades-long shift toward community-based care for those with intellectual and developmental disabilities, said Allison Stark, director of the Division of Developmental Disabilities for the Illinois Department of Human Services.
“The change from that was the idea that people with intellectual and developmental disabilities can be supported to live in communities just like everyone else, and that they actually have a right to live in communities just like everyone else,” Stark said.
That change started in earnest nationally in 1999. But 2011 marked a big shift for Illinois, according to Stark, who has served in her position for just under two years but has been involved in the disability community for roughly two decades. At that point, the state had roughly 13,000 people in community-based care. Since then, it has added roughly 7,000 to those numbers.
But Illinois still runs seven state-operated developmental centers, which serve about 1,600 individuals.
“They don’t offer a very high quality of life for people,” Hamann said. “Sometimes they’re the only option for people who need more advanced medical or behavioral services.”
Stark said some residents choose to stay in the larger centers. In other cases, families may have had bad experiences trying to integrate a loved one into a community setting, or they simply prefer an environment they see as “insulated and supportive,” despite the push toward community-based care, she said.
The developmental centers are the only facilities operated directly by the state, but Illinois also funds close to 12,000 individuals who are in private group homes, working with roughly 225 providers to operate them, Stark said. There is another shift toward people with intellectual and developmental disabilities holding their own leases in subsidized, supportive housing that is integrated with a broader population, Stark said.
Of course, money is always a concern. Illinois has invested $650 million since 2017 to try to make community options more attractive, Stark said. Illinois legislators recently added $170 million in new funding for community-based services, the largest single increase seen in the division, according to Stark.
But the Division of Developmental Disabilities is one of many under the state’s human services department’s umbrella, and all face their struggles, Stark said.
Hamann said there is still a long way to go to full inclusion in the state. Her sister opened the door to a greater disability community that Hamann said has been rewarding to know. She wants other people to know it, too.
“People with disabilities don’t need to be hidden away,” she said. “They’re part of our world, and they want to be part of our world.”
Hamann, now 68, understands that as well as anyone. Once unknown to her, Doering, now 78, is a beloved sister who loves music and ice cream. They go for drives together and play the stereo loudly. They take walks. And Doering shows she cares by taking Hamann’s hand.
These are all things many take for granted, but Hamann has come to appreciate in a unique but beautiful way.
“It’s wonderful to have a sister,” Hamann said. “It’s just been wonderful having her in my life.”