It’s the second day of my son’s life, and I’m crying because our four best friends won’t stop congratulating us. We’re in a hospital room, and our son is upstairs receiving extra oxygen, although everyone says there’s nothing to worry about. He was diagnosed with Down syndrome about five minutes after his birth, and medical professionals have been pouring out a lifetime of risk factors as a kind of ex post facto informed consent. Nothing’s going wrong at present, but the doctors want to tell us about everything that might go wrong eventually. We’re feeling numb and isolated. I’d posted a birth announcement on LiveJournal (the social media of the time) but disabled comments. I didn’t want to hear from anyone.
Then our best friends, two couples, arrived at the hospital bearing cards and flowers, chocolate and champagne (for everyone but my wife, which seemed a bit unfair). Fortunately, in this age of information, they were able to go online and find out what to do when someone’s child is diagnosed with Down syndrome. They’d internalized the core message: Congratulate your friends on the birth just as you would with anyone else. They just wouldn’t stop treating the occasion of my son’s birth as a cause for celebration, which is good, because we had so much to celebrate once we broke through our own ableism and ignorance. I cried then. I’m crying now as I type this.
My son is 2, and a lovely group of women are leaving the house after his two-year evaluation. Thanks to Part C of the Individuals With Disabilities Education Act, disabled children can access quite astounding levels of support if they qualify, and one of the benefits of our son’s Down syndrome (as opposed to other disabilities) is that no one has ever questioned whether he qualified. So therapists come to our apartment in suburban Chicago and work with him on his gross and fine motor skills, speech, and overall development. We pay nothing. There’s money in the program for medical expenses that our health care plan doesn’t cover, and the state will even pay for durable medical equipment—braces for his ankles, a speech device that will say words when he presses an icon, the rental of a mini-treadmill to help him learn to walk. And all we have to do is to sit there, annually, while these kind therapists write out how far behind our son has fallen from “normal” developmental milestones. They’ve been praising him for so long, telling us what good parents we are and how great he’s doing. But the team leader, a social worker, explains that the piece of paper has to be a record of delay and struggle; otherwise we’ll receive less help. When they leave, my wife and I are quiet for a long time and don’t really talk about it until late at night, when we cry.
At the end of second grade, we get an e-mail from his classroom teacher—my son has a special education instructor and is “included” in a mainstream classroom with its own teacher. The class is going to end the year doing reader’s theater, in which students in groups will act out various books they’ve read. I scan the columns listing book titles and students, and I can’t find my son’s name, so I e-mail the teacher. He “will get to participate as an audience member” is the eventual reply.
As with early intervention, a whole team of educators gets together at least once a year to craft an Individualized Education Plan, or IEP, for my son. What a dream to have a child’s needs so carefully considered and then supported, rather than the one-size-fits-all model of American education that serves so many children so badly. By now, the wound of seeing our child described solely in terms of deficits in official paperwork has long since scarred over, but this e-mail cuts anew. I know this teacher means well. I know she is a good person, a hard-working educator, a part of the team, and she doesn’t mean to exclude my son. But it’s also clear that she doesn’t really see him as her student.
It’s our second year in Minnesota, and two county social workers are sitting at the table with me, playing a game I have come to call acronym tennis. They throw jargon back and forth at each other as I stare in bewilderment, frustration, and rising anger. We moved back to Minnesota at least in part to obtain better support for people with developmental disabilities (especially into adulthood). Nearly 24 months into our time here, we’ve accessed none of those resources. The first social worker came over to assess our son, and we cheerfully talked about how great he was, then later were told we qualified for very little. Yet every other parent and teacher kept talking about “waivers” that we should qualify for—but a waiver from what? What service or requirement was getting waived? We struggled through form after form, lost in the bureaucratic hurdles that stood between us and help.
Eventually we found out that a social worker had used “mild” for my son’s developmental disability on his first assessment, so we had to argue with the state that, in fact, his disabilities were not mild. Someone at a local nonprofit advised us to create a spreadsheet that detailed every minute of every day that we had to do something for him that we might not have to do for a typical kid. I tried for 15 minutes, characterizing difference as struggle, then deleted the spreadsheet. I didn’t like the way it was making me look at my son. I went to a mandatory training from the county at a local library, where a well-intentioned employee advised us to describe our “child’s worst day” in our application. We gritted our teeth. We argued for “severe” instead of “mild.” We dehumanized our son in the paperwork but got support.
Disability systems rely on artificial economies of scarcity. Programs are underfunded, so caregivers, teachers, social workers, and disabled people themselves are all pushed to project their needs as necessary and virtuous. But it doesn’t have to work that way. Instead of focusing on challenges, we could emphasize goals. Julia Bascom, the executive director of the Autistic Self Advocacy Network, tells me that “the alternative would be a system where, first, we identified what someone’s goals are and then identified the supports to get them there. So we might identify that a student wants to participate in a science class, and then that they need a notetaker, someone to help with self-regulation, a communication device, etc., in order to do that.” The goal leads the way. What’s more, every child would benefit from having their goals prioritized as we allocate supports, not just disabled children. Bascom tells me that experiences like ours happen because disability service systems are never designed to support people with disabilities but are “about managing access to scarce resources. We start with the assumption that these resources are limited, so you have to prove over and over again that you need them more than anyone else. If we as a society invested more resources in supporting people with disabilities, we could redesign our systems accordingly.”
The problem of false scarcity isn’t lost on providers, but until it’s addressed, it can’t be fixed. “Right now,” Bascom says, “there are some localities and providers that try to come from that positive, goal-oriented approach, but then you wind up with person-centered planning meetings where people have great plans based on their goals, but no services can be provided because the resources aren’t there. We have to fix both problems to really change things.”
Rebecca Cokley, one of America’s leading disability rights activists, formerly at the Center for American Progress and the National Council on Disability, tells me that we need to revamp the basic framework for how we support disabled people and their families. “We need a universal design for the social safety net,” she says. Universal design is a core concept in the disability world. Initially developed in the 1970s with the goal of designing objects and spaces to maximize utility for the broadest possible set of needs, the principles of universal design are now routinely applied to education, websites, and other fields. When it’s implemented, not only do disabled people benefit, but there are positive knock-on effects. One classic example is the curb cut, which makes sidewalks accessible for people in wheelchairs or with a wide variety of other movement-related disabilities. But they are also great for kids on bikes and parents pushing strollers.
Yet on a programmatic basis, disability policy and other social programs remain enmeshed, even at their best, in accommodation models, where specific proven needs or deficits generate specific individualized responses. What might it look like to shift our framing of the social safety net to a universal model? Cokley says we’re a long way from being able to answer that, though we do have a few hints. “We’re seeing it somewhat in schools around the creation of universal learning plans, clearly modeled after the IEP, that lay out how all students learn best.” Cokley hopes to map out the true cost of being disabled in America—what she and others call the “criptax”—and link it to other categories of identity like race, class, and gender. With the “pandemic, recession, civil unrest, if there was ever a time for us to be bold,” she says, “that time is really now. When policies are inclusive of the disability community from the beginning, it’s better for everyone overall.” She adds that “long Covid”—the chronic effects of the disease that have been reported by some—will likely lead to the “biggest boom in the disability population since AIDS/HIV in the ’80s and polio in the ’50s. I do think that nobody’s talking about how we make the social safety net stretch for the long-haulers.”
It’s the second week of November, and my son has been sent home from school because someone in his classroom has Covid-19. We have no support in our home. The Minnesota Department of Human Services says you can’t use Medicaid money for school. The state’s Department of Education says that a school district may hire an aide through a third party and send them into the home, but it isn’t required to do so, and our district says it won’t for nebulous “pay and qualifications” reasons. (When I’ve asked repeatedly in meetings, the school district has refused to clarify what this means.) We hire a lawyer, and she tells us to log my son’s struggles, so one morning, instead of helping him, I open a document and write that he can’t type his password, can’t click on his e-mail, can’t open Google Meet, can’t click the “join” button, can’t mute or unmute his microphone, can’t join a breakout room, gets frustrated when he says no 20 or 30 times about the class’s song choices, gestures at a screen in ways his teachers can’t see, dances out of view of the camera so his teachers don’t know he’s participating. On and on the list of “can’t”s goes, and again I’m crying. And even with the documentation that distance learning is failing, the school district doesn’t seem to care.
We’re living a good life. Our kids are amazing. Minnesota is just the place we want to call home. The state—and notice how we’re tangled in local, county, state, and federal systems, often in conflict with one another—should help every family with education, child care, developmental equipment, and all the other things. Every time the system works well and a team of educators meets in a room to decide how best to support my son, I think that every child could use that level of individualized care, if only we decided that our collective responsibility extended from the “worthy disabled” to all. The same can be said for my son’s publicly subsidized health care, therapy, and other benefits.
But we need to rebuild the systems that support him and could support so many others around enabling strengths rather than projecting helplessness, around justice rather than false economies of scarcity. Because otherwise there are too many tears. Too many struggles. It doesn’t have to be so hard.