One size doesn’t fit all: Misericordia, Arc advocacy group at odds
By NEIL STEINBERG November 10, 2013 9:44PM
Updated: December 12, 2013 6:09AM
Sister Rosemary Connelly is worried.
“There are advocates out there, some paid by the government, who really feel that anything big is bad, and there’s no exceptions,” she tells me.
We’re having lunch at the Greenhouse Inn, one of the more extraordinary restaurants in Chicago, staffed almost entirely by residents of Misericordia, a Catholic home for people with developmental disabilities, particularly Down Syndrome.
The issue is an old one. Abuses at large institutions warehousing the disabled were a scandal, particularly in Illinois, and in some places still are. The state is pushing to move people out of institutions into small, independent living residences.
Sister Rosemary feels unfairly maligned.
“If you’re big, you’re bad,” she says, summarizing critics’ thinking. “They’re very angry at us because we weaken their story, because we’re good. They really would love to get rid of Misericordia.”
She has been in the this business since 1969. She has seen how someone can be active one year and helpless the next.
“What are we going to do when these people become so disabled? Where are they going to go?” she said. “Dump them in inappropriate nursing homes, and that will be one of the scandals of our time. But right now there’s only one way to serve the people, according to a few of these advocates.”
At first I think Sister Rosemary is exaggerating. People without disabilities choose a spectrum of living arrangements — dorm, commune, hut on a remote island — why should it be any different for those facing handicaps? Saying people must live independently is as rigid, and potentially dangerous, as saying they must live in an institutions. “Each according to his own need,” as the communists say.
Surely, she’s too focused on her respected institution, which has its own independent houses on campus and is building more. Who, exactly, I ask, are you worried about?
“Certain very powerful groups, like Arc, they have no room for Misericordia,” she says. “And they heavily influence bureaucrats in the federal and state government.”
For all its wealthy patrons, Misericordia relies on government funding, which can be tardy. “2012 was a terrible year for [the state] paying their bills,” says Sister Rosemary. “They owed us $27 million.”
The money’s flowing again, but this worry remains. I phone the Arc of Illinois, an advocacy group. Executive Director Tony Paulauski doesn’t want to speak of Misericordia. “I don’t think it’s newsworthy,” he says. “What’s newsworthy is rebalancing. This is a nonissue.”
Gosh Tony, thanks, but how about you don’t tell me my business and I won’t tell you yours? I have an 82-year-old nun who is worried that when she isn’t here, pulling strings, people like you will tear down what she has spent her life building. Humor me.
“It’s a nursing-home model, Neil,” he says. “We have better models now. I’m spending all my time on the state closing antiquated state institutions. That’s the real story.”
So she’s right to worry? “I don’t want to tick her off,” he says. “I don’t want to tick her legislators off. I don’t want to detract from what’s really important.”
Shutting down big institutions like Misericordia and moving their residents out?
“Yeah,” he said. “What we want to see is people controlling their own homes, choosing what they want to eat for dinner, doing what you and I take for granted.”
I’m all for that too. But when you tour Misericordia, and see people who are locked into their bodies, eyes clamped shut, hands curled and frozen, the idea that they have to be removed from this setting and placed somewhere else to serve some greater activist ideology is what we laymen call “nuts.”
“It’s all an overreaction to the past,” says Sister Rosemary. “Where big was bad. Today big can be bad, it can be good. Small can be bad. The question is, how much supervision is going into these houses.”
She still remembers what happened last time there was a drive against institutions.
“A man came in from Boston and said orphanages are bad, close them all, stop the funding,” she says. “When I see middle-age people on the street, I wonder, are those the success stories of the 1970s? That they placed them in inadequate places, but they got them out of orphanages?”
Misericordia isn’t going anywhere, for now — with 600 residents, it has a 500-person waiting list. The families of those residents, and those who hope to be residents, obviously see its value. It’s a shame that those who should know better refuse to see it as well. I’d like to tell you that you’re wrong to worry, Sister. But you’re not wrong.