Arc and Don’t Forget How We Got Here

Katherine and her sister remind us of how supports to individuals with disabilities have
evolved in the past 50 years.

Story from the Chicago Sun Times.

Tony

Katherine Hamann was 12 before she learned she had an older sister. She was an adult
before she met her for the first time.

Her sister, Margaret Doering, had been just 2 years old when their parents sent her to
live in the sprawling Dixon State School for disabled children, believing as was common
in 1945 that cutting ties would be best for everyone.

Back then, the doctors would have said Margaret was profoundly mentally retarded.
Today we would say she has a developmental disability.

Margaret, 72, lives these days with five other women like her in a south suburban group
home known as a “community integrated living arrangement” or CILA.

Last week, while lawyers for these group homes were in federal court to wrest overdue
payments from the state to keep the doors open for Margaret and thousands of others like
her, I met Hamann at a rally organized by social service providers caught in the state’s
budget battle.

She told a story I thought you should hear, too.

When Margaret was 2, her mom, fearing she was deaf, took her to the family doctor. The
doctor sent her to a specialist who pronounced her “feeble-minded” and said she should be
institutionalized.

Margaret was nonverbal, still is, and had already become unmanageable for her young
mother.

“They told her she would need too much care. They said it would place an undue burden
on the family to keep her at home,” Hamann said.

This was during World War II, and their mother was living at home with her parents while
their father was serving in the Coast Guard, stationed in the North Atlantic.

So they took the doctors’ advice, had Margaret declared a ward of the state and put her
in the severely overcrowded Dixon facility, pulling strings to get around a waiting list, which
should tell you they were hardly alone in this approach.

Then for reasons Hamann still can’t reconcile, her parents basically walked away from
their daughter and didn’t go back.

They moved on with their lives and had three other children, including Hamann. For 17
years, Margaret had no visitors at all from the outside world.

Hamann, 10 years younger than her sister, knew none of this until much later.

It wasn’t until her brother pressed their mother about the mysterious mail they received
from Dixon that she divulged the family secret.

“She described her as being a vegetable,” said Hamann, who says the Margaret she has
come to know is anything but.

Hamann was 27 when she went to meet Margaret at Dixon for the first time.

When Dixon closed in the early 1980s, Hamann moved her to Howe Developmental
Center in Tinley Park. That allowed her to become more involved in Margaret’s life.
Hamann even took a job at the facility.

By the time Margaret turned 65, Hamann had come to the conclusion she would be better
off in the smaller, more personalized setting of a group home.

In the Olympia Fields facility where she has lived these past seven years, Margaret has her
own room, something she’d never had her whole life.

“That’s one thing everybody who works with her knows is how much she likes her room,”
Hamann told me.

When Margaret wants to be around her roommates, she can go into the common areas. If
she wants to be alone, she retreats to her room with the Lazy Boy rocker and stuffed animals
that are so important to her.

Hamann surveys what’s happening to the developmentally disabled in Illinois and sees a
state government that was never very good in danger of backsliding.

Gov. Bruce Rauner’s administration wants to cut thousands of disabled children out of the
Early Intervention program that allows families to get specialized care for their disabled kids
at an early age.

With such a program in place, Hamann believes her parents would have been much more
inclined to raise Margaret in their home, and that with the proper help, might even have been
able to teach her sign language.

Rauner also has taken the budget ax to the respite care program that allows these same
families a few hours of help each week in the home to allow them to go to the store or take
their other kids to a movie.

When coupled with the withholding of funds owed the providers, Hamann fears she sees a
state headed toward sending its most vulnerable residents back to the grim institutions of
yesteryear.

I’d be more worried the trend is toward abandoning them altogether.

Tony Paulauski
Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423
815-464-1832 (OFFICE)
815-464-1832 (CELL)
Tony@thearcofil.org