Grace Pillsbury is 7 years old and goes to Drummond Montessori, one of Chicago’s public magnet schools. Her school is in a very old building, she tells me. 

“Once, in my old classroom, part of the ceiling fell down,” she says, “Everybody freaked out because no one seemed to know knew what to do.”

Grace inherited a rare metabolic disorder called Gaucher disease. 

“We never anticipated that the disease would have any influence on her education,” her mom, Karen Pillsbury, says. “She goes for treatment once every two weeks. She goes back to school. It’s fine. It’s not something anybody wants to do, but you do it.”

As long as Grace could walk around, she fit right in at Drummond. But then, a few months ago, Grace had what’s called a “bone crisis,” which Karen says means, “the Gaucher’s cells have built up in her bone marrow and cut off the flow of oxygen so the bone dies and it’s cut off the flow of oxygen in both her femurs and her hip.”

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Now, Grace is in a wheelchair and will likely be for a while. She’s at home recovering from the hip break and works with her teacher to keep up with her school work, but her mom is hoping she’ll get to go back soon.

“Grace is very a social girl,” Karen says. “She likes to talk. She likes her friends. She likes the classroom. She likes the experience of being at school and I can’t duplicate that here.” 

But here’s the problem. Drummond doesn’t have an elevator. There is a chair lift up to the first floor of the three-story building. But Grace’s classroom isn’t on the first floor, so Karen thought, maybe the school could just move Grace’s classroom downstairs. 

“I have about 800 parents who will move a classroom over the weekend,” Karen says. “If that’s not acceptable, there’s something that can be done so that girl can go to school three hours a day and feel a part of her community.”

So, she contacted Drummond school leaders to set up a meeting to talk about it.

“When we got there, the meeting was run by an attorney for CPS who within the first five minutes announced that (Grace) was being moved to a new school and that would be effective immediately and there was no discussion,” Karen recalls.

Karen says she immediately broke down. Grace has been at Drummond since preschool. Her little brother is there. They live just two blocks away and Karen’s parents and grandparents even went to school there. 

By this time, Karen had connected with the disability-rights group Access Living and had been in touch with education director Rod Estvan.

“Rod emailed and said, ‘Oh, we’ve worked on this before. We filed a complaint back in the 90s and won,’ ” she says. 

Estvan says in 1994, there was a young Latino girl in a wheelchair who had gotten accepted into Andrew Jackson Language Academy, and at the time, CPS said she couldn’t go there because she didn’t indicate she was in a wheelchair on the application. 

“Well, (that) doesn’t matter,” Estvan says. So Access Living filed a discrimination complaint on behalf of the girl’s family with the U.S. Department of Education’s Office of Civil Rights. And in 1996, the district agreed to upgrade all of the schools with special magnet programs so they were accessible to everyone, including disabled children. By the end of 2003, the school district had finished the last of the construction. 

“Well, Drummond school became a magnet literally seven months after that capital program ended,” Estvan says. “Did they think that they were beating the game?”

Access Living and the Pillsbury family have now filed another discrimination complaint with the U.S. Department of Education’s Office of Civil Rights, demanding CPS make not only Drummond accessible, but all magnets created since 2003, including any created in the future. 

CPS officials did not respond to multiple requests for comment. 

Accessibility remains an issue in many of the city’s public schools. Estvan estimates a third are still not accessible, but he says he hasn’t seen a case like Grace’s in more than a decade, partly because there was money in the budget and CPS could make an upgrade when there was an individual case. 

That slowed when Mayor Rahm Emanuel took office. The budget for accessibility upgrades was cut to $500,000 and then this year dropped to $150,000. Estvan says that amount could maybe upgrade a couple water fountains or maybe a bathroom or two. 

Grace’s mom Karen says she knows the district is in a budget crunch, but she also says this isn’t just about her daughter.

“We go through this process and maybe somebody else doesn’t have to,” she says. “I mean, nobody wants to be in this situation. And we thought long and hard about even getting involved in a case at all. But I think when you have an opportunity to help the next person, you do it.” 

As for 7-year-old Grace, she’s not quite well enough to go back to school yet, even though she wants to.

“I love my school and I don’t like not being able to go there because I just really miss my friends,” Grace says. 

But in the meantime, she’s been doing a lot of reading and drawing and playing with her dog.

Becky Vevea is an education reporter for WBEZ. You can follow her @WBEZeducation.