By all appearances, our city has forgotten about Willowbrook, the state-supported school for children with developmental disabilities that was shut down nearly 40 years ago due to its inhumane and unsafe environment. Our city has forgotten that there once was a time when people with developmental disabilities were not expected to be active members of our society. Although I was only 15 and living in New Jersey when Geraldo Rivera’s reports helped close Willowbrook, I thought about that place every day of the recent New York City bus strike.
I am a parent of a beautiful 10-year-old son named Jack who has an intellectual disability and cerebral palsy. And I am a professional advocate at Resources for Children with Special Needs. Prior to the city’s school bus strike, I often wondered what life would have been like for my family in the days of Willowbrook. What if countless courageous parents before me had not chosen to battle the segregation of institutions and bring their children back home?
If not for them, Jack would most likely not live with us at home today. But the battle for inclusion is not over. If you don’t believe that, consider what happened to children with special needs during the five weeks of the bus strike. Students with involved needs were behind before the strike began. Now they are further behind.
We do not know exactly how many students with disabilities missed school due to the strike; according to news reports, tens of thousands of children with special needs were denied access to education every day. What we do know is that the more involved a child’s needs are, the more devastated they were by this strike.
These students not only missed five weeks of school they missed related services such as speech therapy, occupational therapy, counseling, vision and hearing services. Such special education services are essential because they support and aid acquisition of knowledge, skills, and communication abilities. All students receiving these services are legally entitled to them.
The Department of Education did not monitor missed services and have said nothing about making them up to students once they return to school. The result is that, unless a family legally pursues compensatory services, and/or can afford to pay for them on their own, the educational progress of these students was devastated by the bus strike.
The academic cost of the bus strike on our students was incalculable.
The Department of Education made gestures to remedy this mid-winter learning gap by listing curricula by grade on their website, leaving the responsibility of instruction to families. But very few parents have the time or skill needed to teach their children with special needs. Furthermore, many students who attend District 75 programs do not take standardized tests and are “alternately assessed” through teacher observations, class work and participation. These students have highly individualized education plans, or IEPs, that are based on specific developmental needs, meaning these students were not academically on grade level before the strike began and are certainly not on grade level now.
Our kids don’t deserve pity, they deserve respect. They deserve to be valued the same way as any other group of citizens living in this city. But they aren’t. They aren’t respected. They aren’t counted. Their missing services weren’t tracked. Their legal rights were violated for five weeks straight.
Before the bus strike, I woke up every day to a pile of tasks: investigations, bills, mysteries, problems, and irritants in the Jack files. For five weeks, the bus strike replaced every single one of these. Parent advocacy is what I do for a living, and I was overwhelmed. Jack is now even further behind than he was before the strike started. Many parents I’ve spoken to throughout the course of the strike don’t even know where to start to get back on track.
I’m glad the strike is over now. But, along with the loss of services and a month of education, an opportunity was lost as well. The contracts with the bus companies haven’t been meaningfully updated in over 30 years. This was a perfect time for true reform when it comes to busing some our most vulnerable citizens to and from school.
When I felt really low about the situation during the strike, I tried to remind myself that despite all the unacceptable damage to thousands upon thousands of vulnerable children, there was an upside. When we could get him to school, I loved watching my guy interact with his teachers and therapists; I loved getting to know some of his classmates (the ones who made it to school themselves) and watching him interact with them.
The true silver lining to all of this for me is the realization that if it weren’t for the inclusion movement that began with Willowbrook Jack and I never would have been out in public together, on our way to school.
But, clearly, the larger fight is not over yet.