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Pulling It All Together

This short chapter offers an example of how the five conversations can fit together in a tangible way to help us win change that matters for our lives.

My son has special needs. Parenting him has felt like a full-time organizing job for me and my wife, Julia. It’s been a driving purpose in our lives. When Isaiah was young, we struggled to have the kind of back-and-forth conversations with him that came naturally with his twin sister. When he was eighteen months old—after being told by one of the best children’s hospitals that his hearing was fine—we finally got him the right test, which showed that he was hearing impaired. Then, at age three, he was diagnosed with pervasive developmental disorder—not otherwise specified. That means being on the autism spectrum. To get him the help he needed to learn to communicate and connect, we had an endless set of fights with insurance companies, schools, and hospitals. At one point, we held a family sit-in outside of the office of the director of special education in Ann Arbor, Michigan. It’s taken everything I’ve learned as a legal service lawyer and community organizer to raise my son.

We got a lot of help along the way. The Pennsylvania Medicaid program helped him get his first hearing aids. The Philadelphia Early Intervention system made it possible for him to attend a school for the deaf to learn to understand language and speak. Doctors and therapists taught us how to raise a child with autism. By the time Isaiah had finished elementary school and gone through many hours of therapy, he’d become a social being. He was still awkward, but he’d learned to engage with other people and show his brilliant mind and caring heart to the world. Still, we’d dreaded middle school.

What made the difference and helped him have his best school years was a special program at his neighborhood middle school. The program gave intensive support to students with autism, while making it possible for them to participate fully in regular classes. But when Isaiah was in seventh grade, he came home from school one day and told me that he’d overheard his teacher and teaching assistant talking about budget cuts to the autism program. (Despite being hearing impaired, my son has a knack for eavesdropping on other people’s conversations.) He told his teacher to talk with me, saying that I was a good organizer and could help. I thanked him for the compliment but did nothing.

Although I earn a living agitating people to stand up and fight for their families and communities, I almost missed this knock at my own door. I had taken for granted that my son would get what he needed. I had tossed the invitations to special education parent meetings. I couldn’t tell you who was on the school board.

A week later, another parent sent out an e-mail asking us to attend the next day’s school board meeting to speak out against the budget proposal. Taking a distracted break from responding to e-mail at work, I clicked the link to the budget document, which showed the proposal to cut seven of the twelve aides in the program. That triggered the anger I feel when it seems that people who are weak or different are being picked on. But I wouldn’t have given the e-mail a second look or signed up to speak if Isaiah hadn’t primed me the week before—if he hadn’t essentially reminded me to reflect on my purpose in life (first conversation).

The next day, I joined six other parents of children with autism at my first school board meeting in my county. Most of us met for the first time as we waited to testify. I wrote notes about what I would say and put the folded paper in my pocket. It stayed there. We listened to parents from a preschool program that was facing an increase in tuition. They had on matching T-shirts with their message and told stories about what higher costs would mean for their kids. Then the clerk said that the time for public testimony was over. Not a single one of us autism program parents had a chance to say a word.

In my first job as a community organizer, I’d spent my days talking to parents about what they hoped for their children and thought about the public schools in their neighborhood. I was in my late twenties and knew little about being a parent. Mamie Nichols, a renowned neighborhood leader in Philadelphia, told me that there were two systems you never trust your children to: the school system and the health system. You have to be vigilant with both. I didn’t fully understand what she meant until I had my own children, especially one with special needs. And then I knew.

I’d learned as an organizer that it was a recipe for frustration for individual parents to speak at school board meetings. One parent after another would go up to the microphone, tell a heartbreaking story, and then be met with stone silence from the board members. Next. Next. Next. Still, years later, sitting at the school board meeting in my own town, I felt disappointed to not be able to speak about the cuts to my son’s program. It felt like we’d let our kids down.

Then I heard the voice in my head that says every problem has a solution. I remembered that I was an organizer. I asked the other parents to join me in the hallway. We circled up and began a round of introductions, which included telling our stories. That story sharing (second conversation) made all the difference. One mother told about how her son had threatened to commit suicide at his old school, where he was essentially being punished for his autism. But now that he was in the autism program, he was finally doing well because of the help of aides and a teacher who understood what it meant to be on the autism spectrum. By the time we’d made it around the circle, we’d experienced emotions that began to bond us. It was clear that we had a lot in common and had a lot at stake in stopping the budget cuts.

By the time we’d made it around the circle, we’d experienced emotions that began to bond us.

I asked people to do two things: one, come to my house the next week for a parent meeting, and two, go back into the board meeting, wait until it ended, and then ask the school board president for a meeting. During the next six weeks, eight to ten parents met weekly at our house. We became a team (third conversation). We drank together and shared stories about our children that made us cry. We put out a short report on the history of the autism program. We learned that the program existed because parents had demanded it. They’d been upset that their children were being isolated in special education classrooms, a problem that is still all too common.

Before Congress passed the Individuals with Disabilities Education Act (IDEA) in 1975, most children with disabilities were excluded from public education. They were placed in institutions or special schools, where they received little or no instruction. With the IDEA, Congress created a right to a free and appropriate public education for students with disabilities. But it provided only part of the funding. This makes special education programs a constant target of budget cuts by local school districts. Without setting out to, we joined a long history of organizing against the segregation of people with disabilities. And we were coming up against the structural challenge of how special education is funded in the United States.

The next thing we did was to build a base (fourth conversation). We reached out to other parents, beginning with those who would be directly affected by the proposed budget cuts. Our first public action was to send a letter to the school board signed by more than half of the sixty families with children in the autism program. But we knew we needed a bigger base to win. So we started having conversations with parents of children in other special education programs. We shifted how we talked about what we wanted to make it clear that we were in solidarity with parents whose children needed different kinds of services. Later, when the fight got hotter, we organized a Change.org petition that more than a thousand people signed. Not only did the petition site send e-mails to each of the school board members every time someone signed, but the comments signers left helped us identify people who could testify at hearings. The support from neighbors—many of whom hadn’t known that we had a son in special education—was moving.

We began to engage the powers that be (fifth conversation). We met multiple times with each board member and with key school district staff. After the school board president told us that she wouldn’t reverse the proposed cuts, we went public. We shifted our message. We’d been making policy arguments about the program being a success that saved the district money it would otherwise have spent sending children with autism to private schools. Now we delivered a blunt message that the board was picking on children with autism. We held a rally on the school district steps. We essentially took over a school board meeting to tell our stories. And we made cuts to the autism program an issue in the school board election that was taking place at the time. We generated a lot of local media coverage, including a story on the evening news on which my son publicly “came out” as having autism.

At one point, a school board member who was on the fence called us to see if we would be open to a compromise. The group was initially split on how to respond to the offer. But the work we’d done to build trust helped us reach a group decision to keep fighting to remove all the cuts from the budget.

Later in the spring, after watching the school board vote four to one to restore the full funding, we stood together outside the school district building for nearly an hour, celebrating and telling stories. It was late, and we all had to get home to put our kids to bed, yet the pull of the community that we’d created together was strong. Six weeks before we’d been strangers; now we cared about one another. For the first time, I felt like I belonged in the place I lived. And I was glad that I was able to answer my own son’s knock at the door.

Our fight to save the autism program was a small example of what people can achieve when they organize. I took for granted the education my son was receiving because I didn’t understand the history of parents fighting for the program in the first place. Nor did I know about the political dynamics in the school district that put my child’s education at risk. We all have fights like this that need to be waged in the communities in which we live. Our capacity to fix problems close to home is a foundation for a functioning democracy. At the same time, we’re in, or need to be in, bigger battles with more entrenched and powerful interests. Whether we’re trying to stop budget cuts in our communities, save the planet from ruin, or end policies that create financial incentives to put more and more people of color behind bars, we need to be clear-eyed about what we’re up against and what it will take to prevail. That is what the next chapter is about.

Our fight to save the autism program was a small example of what people can achieve when they organize.