A Measure of Intelligence, page 12
There are moments when I glimpse the kind, loving adult that I know Louisa will be. I am not a morning person, and Andy and I usually wake to the sound of Louisa’s shuffling feet on our floor. I open my eyes, and she presents me with a card. It’s nothing elaborate, a sheet of folded white paper taken from her art table. She has written “Happy Birthday, mama. Love, Louisa” on the front and has drawn a picture of a chicken on the inside. My birthday is in six months. I add it to the stack of similar cards on my nightstand. Sometimes she goes into my office and grabs an envelope. She draws a stamp and puts her return address on the outside. On the inside is a small fluorescent sticky note. “I love you, mama,” it says. I take some comfort that she knows how to address an envelope, and I try to remember if this was a skill mentioned on the behavior assessment forms I have filled out. But more crucially, I recognize the enormous privilege to be greeted with such love by someone I love so much.
Before I can go to the bathroom and put on my glasses, Louisa begins fixing herself a scrambled egg in the kitchen. She gets out a bowl and breaks an egg without any traces of shell. Then she adds some milk, grabs a whisk, and fluffs it all together. I usually walk gingerly into the kitchen just in time to turn the stove on and add a pat of butter to the pan. Then Louisa pours the egg into the pan, grabs the spatula, and moves around the eggy mass. When it’s done, I turn off the stove and help her pour the egg into a dish. I wonder how many seven-year-olds can do this. I don’t remember whether make a scrambled egg or cooks semi-independently have ever been listed on an adaptive behavior survey that I have filled out for Louisa. Nonetheless, this seems promising. Someday, when I’m not there to cook for her, she can make a scrambled egg.
It is important to me that I face Louisa’s future with my eyes wide open, fully aware of her potential and realistic about what I can do to prepare her as much as possible. But this perspective on the future leaves me feeling helpless. I cannot stop the eventual tide of cognitive decline, and its resulting isolation, no matter how functional Louisa may seem in the present. And despite the early intervention and support in public school, support for adults with intellectual disabilities is harder to find. Other parents describe it to me as being shoved off a cliff.
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Employment serves as a clear marker of how someone is functioning. I have heard a story of a couple who received a prenatal diagnosis of Down syndrome and went to meet with a geneticist about their options. The geneticist told them that people with Down syndrome have more opportunities now. “The young man who sacks my groceries has Down syndrome,” he said. I’m not sure how this couple responded, but it seems like an awkward moment. The geneticist was trying to help the couple envision an uplifting future, one that was different from the institutions and decisions informed by eugenics in the past. I have had similar experiences when well-meaning friends have tried to suggest possible futures for Louisa. “She seems really into babies. Maybe she can work in a daycare when she’s older,” one friend once offered. These suggestions are not necessarily what Louisa wants; they are what society permits under its rigid, ableist framework.
There is, of course, dignity in all work and there is nothing wrong with bagging groceries or working in a daycare. Fifty years ago, people with Down syndrome would have never been prepared for or given such opportunities. But the specifics of Louisa’s future are beside the point. Since that evening before Louisa was born, when I asked Andy whether he thought our daughter would go to Yale or Brown, I have learned that prioritizing how well Louisa functions will not lead her to her best life. I would rather no one imagine Louisa’s future in terms of how productive and high functioning she will be. I would rather we had a world that prioritized how well she can serve her community and how well her community can serve her.
The geneticist painted an optimistic picture for the couple of their child’s potential to function as an adult. But the truth is that only 18 percent of people with intellectual disabilities are employed in the United States. Many who are employed spend their days in sheltered workshops, which isolate people with disabilities from the general workforce. The Fair Labor Standards Act is most well-known for establishing minimum wage. But it also created 14(c) certificates, which allow employers to pay people “whose earning capacity is impaired by age or physical or mental deficiency” at a rate below minimum wage. In 2020, Americans with disabilities working under 14(c) certificates earned less than half of the federal minimum wage per hour.
Functioning is a diagnostic trait, yet how much we function and how people of certain identities are allowed to function are shaped by socially constructed and historically shaped circumstances. The Fair Labor Standards Act was passed in 1938, when eugenic sterilization was still a widely accepted practice and the segregation of adults with disabilities from the rest of society was considered the best solution for everyone. A world based on valuing perfection over inclusion, progress over opportunity, still persists. Although Louisa is an important part of her school community now, I feel the constant threat of that disappearing in the future. Despite her dreams for her future, she could be denied the access to the educational and employment opportunities that she deserves.
There is no limit on how little employees working under the conditions of 14(c) certificates can be paid, but wages are often determined with a brutal calculus that values productivity above all else. The Fair Labor Standards Act states, “The commensurate wage of a worker with a disability who is 75 percent as productive as the average experienced nondisabled worker, taking into consideration the type, quality, and quantity of work of the disabled worker, would be set at 75 percent of the wage paid to the nondisabled worker.” In other words, the productivity and value of a worker with a disability can be measured against a standard of normal. The act also suggests that time trials might be used to determine the productivity of an individual with a disability, putting the burden on the workers to prove how they can function in a system that was set up to ensure their failure.
These time trials are an explicit way in which we measure human value against one another. We compare ourselves to each other to find what is normal and make decisions about how we care for others with that sense of normalcy in mind. This conception of functioning and productivity is grounded in statistics and quantitative comparison. The calculation of productivity of those working under 14(c) certificates has quite a bit in common with the statistical calculation of IQ in the hands of those like Goddard. Both tests evaluate functioning in terms of productivity. Both statistically quantify human value. Imagine if all of us had to undergo such an explicit determination of our productivity and functioning, how demeaning it is to a sense of human value.
As I write, eighteen states have passed legislation to phase out 14(c) certificates. Legislation has been introduced into the US House of Representatives to do so at the federal level. The Department of Labor is currently reviewing its policy on subminimum wages. The number of people working in sheltered workshops has steadily decreased in recent years. But the full elimination of 14(c) certificates has been slow, meeting resistance from politicians, rehabilitation service providers, and caregivers who still view 14(c) certificates as a justifiable system of employment for people with disabilities. The resistance to efforts to eliminate them often takes a charitable tone that echoes the perspective of those like Goddard and other eugenicists of the early twentieth century. Here is how one member of the Kansas legislature defended the status quo when the state began to consider eliminating 14(c) certificates:
They [those who work in sheltered workshops] are people who really can’t do anything. And if you do away with programs like that, they will rot at home. There is no place for them to go. They’re taken care of. They’re fed. They have a place to go and be functionable and they’re happy. But when we come up here and we start dragging them [sheltered workshops] through the mud, I don’t support this amendment because I think we need to support those companies.
This elected official values companies that exploit the labor of people with disabilities over equal respect and equal wages. Human potential is created by the opportunities and conditions in which we function. Low functioning, the label that describes someone who “can’t do anything,” ensures that a person’s potential and life worth will constantly be undervalued. People should not be pushed into employment situations where they are not comfortable. Everyone should be able to choose where they work. But all people deserve to be paid minimum wage.
The perception that people with intellectual disabilities “can’t do anything” is shaped by a world that values productivity above care and self-fulfillment. It is also an expectation that is solidified at an early age. I talked with Kyle Stumpf of Dubuque, Iowa, about his experience in school. “At times it felt like they just warehoused him,” Bill Stumpf, Kyle’s father, told me. Bill fought for his son’s place in a regular classroom in elementary school, but as Kyle got older, the fight with teachers and administrators to meaningfully include his son became harder. “You just get beaten down,” Bill said. “I finally thought, Okay, let’s just get through these next few years,” and they moved Kyle to a segregated classroom. After high school, sheltered workshops seemed like the only option for Kyle. It was difficult to see that Kyle might be capable of more if different opportunities were in place. But eventually, Bill saw a presentation on competitive integrated employment, regular work with support for at least minimum wage, and began to believe more was possible for his son. Kyle, now in his thirties, has worked at a Papa Johns restaurant for almost ten years. He makes more than minimum wage, and with his earnings, Kyle likes to go out to eat and visit microbreweries. He is also putting some of his money in an ABLE account. When I asked Kyle which job he liked better, the pizzeria or the workshop, he broke into a wide smile. “Papa Johns,” he said softly. The manager now calls Kyle in to work hours in addition to his regular shifts when they are busy. His job has also generated meaningful friendships with coworkers. “It’s real-life stuff,” Bill told me. “They’re looking at his worth.”
A capitalist society values high functioning above all else and defines this functioning in terms of productivity, having a job, and making money. There are, of course, other things that can be valued about a job—a sense of purpose and importance to community, offering your unique perspective to the world. Yet having a job is a rare accomplishment for someone with an intellectual disability. On average, those who are employed work for about fourteen hours a week, and earn about $140 per week. When people with intellectual disabilities are hired, they often work in entry-level service jobs with low wages and minimal benefits. This is hardly enough to support oneself independently.
The same system that penalizes people with disabilities for not being functional enough discourages them from being functional. Not only is it possible for people with disabilities to be paid less than minimum wage, but those who do find employment at a sufficiently high wage risk losing social security benefits and the Medicaid that comes with it. How high is too high? The “substantial gainful activity” threshold in 2024 is $1,550 per month, which means that people with disabilities who depend on social security benefits and Medicaid for health insurance may only earn $18,600 per year. If they earn more than this, they risk losing their health insurance, housing, and any support they might need. People with disabilities who need support are thus caught in a trap. They are forced into poverty, which compounds the limitations that are put on them by an ableist world. There are ways to work around the employment income threshold. Special needs trusts allow us to save for Louisa’s future without penalizing her. ABLE accounts are a kind of savings account that allow a person receiving disability benefits to save up to $18,000 a year. Neither of these options, however, addresses the way in which Louisa’s integration into society will depend on her ability to function in the future.
Under these constraints on work and judgments about functioning, it is no wonder that depression is a common characteristic of people with intellectual disabilities. It is also not surprising that so much attention is paid to what people like my daughter can and cannot do. Those with intellectual disabilities are not likely to contribute in valuable ways to capitalism’s cycle of production and profit. We usually see this non-productivity as a deficiency in the person. But given our current discontent with the inhumane demands of work and its tyranny over our lives, it might be time for our values of productivity and high functioning to shift. Those who are deemed “normal” or “functioning” might just be those who are able to most easily acquiesce to capitalism’s demoralizing demands.
We sat with friends at dinner and talked about parenthood as a long journey of letting go, of preparing them for independence and preparing for the day when they will no longer need your guidance, your comfort, your care. Our friends have three kids and are understandably daunted by what sending them to college will mean financially. I nodded along as if I understood, though I was silent. I do not know what the future will look like, but it is possible that Louisa will always need our care. Although I am astonished by how quickly she has grown and changed, I am not preparing myself for a day when she will no longer need me. I am preparing for a future when she will always need me. And I am trying to prepare for a future in which I will no longer be there to take care of her.
Grasping for some common ground, I mentioned how concerned Andy and I are with saving, not necessarily for college, but for the rest of Louisa’s life. “I know I’m ignorant,” our friend said, “but I thought that the government kind of takes care of people like Louisa.” It was a moment in which I felt a deep rift of parental difference. I realized that Louisa’s ability to function could never be truly evaluated or predicted by a test. Her functioning was entangled in a mess of historically determined systems based on prejudice and bad science, and explaining this to my friend would be far too difficult for dinner conversation. My concerns over functioning and dependence didn’t originate in unrealistic expectations or a denial of Louisa’s challenges. They were grounded in how labels like low or high functioning determine what opportunities would be extended to her. I want Louisa to find work that makes her feel like a valuable member of a community. I want her to feel like she is making a contribution to the world around her. But I also obsess about her future with the greatest urgency because I want Louisa to be able to take care of herself after Andy and I are gone.
What might this future look like? It would require employment not evaluated and determined by productivity. A more person-centered approach in which all adults are considered worthy of employment on the terms that work best for them, a job that matches Louisa’s interests and strengths, rather than assuming what she can’t do. Support and self-determination would need to coexist; one would not disqualify her from deserving the other.
One summer evening Louisa, Andy, and I packed a picnic dinner and took it to the park. It was a warm, humid evening and we set out our sandwiches and watermelon on a picnic table not far from the swings and monkey bars where Louisa liked to play. A mother sat at a nearby table and watched her daughter as she climbed up the slide and squealed in a high-pitched song, expressing something in between words and emotions. Before we could find our forks, the mother began talking to us. She shared too much about her daughter’s diagnosis. She guessed that our daughters had the same intervention specialist at school. She asked if I knew other kids and their mothers whose names were not familiar to me. She asked about Louisa’s IEP. She told me more about her own daughter than I was comfortable with. “She got up yesterday and made scrambled eggs for her father and me,” the woman said. “Maybe she will be able to take care of herself when she’s older after all.”
I was not interested in chatting with this woman, but she didn’t seem to pick up on my signals. I wanted to talk to my husband and watch Louisa climb. But I couldn’t help noticing the story about scrambled eggs and how that experience meant something about the way our kids are measured, evaluated, and judged. As I swallowed a bite of watermelon, I had to admit that this mother and I shared something meaningful. No matter how well we function, we are all part of the same system. Louisa was more interested in playing than eating, and she headed for the swings. Soon Louisa and the other girl were playing together, chasing each other in their own version of tag. I turned to the mother and smiled. “Yes,” I replied, “I know exactly how you feel.”
Nature Nurture
One afternoon when Louisa was in third grade, I picked her up from school after the first snow of the season. We strapped on our snow gear to sled down the formidable hill in our backyard. Snow was still falling and green tips of grass peeked through the thickening blanket of white. We trudged up and down countless times, taking turns on solo trips and sitting together on our purple plastic sled. Eventually our toes turned numb and we headed inside to start her homework. So far school hadn’t been easy, but Louisa amazed me with what she had learned. Due to the pandemic, which had started the year before, we were able to put off the IQ test a while longer, and Andy and I hadn’t brought it up with the school psychologist. We were more focused on the daily challenges of learning. Louisa struggled with mathematical concepts like regrouping when subtracting multi-digit numbers, but I tried to help her keep up. Progress was slow but hard-earned, and I constantly reminded myself how well she was doing considering the expectations for a kid with Down syndrome.
Louisa’s teacher asked all her students to read for twenty minutes every night and to fill out a homework log, which asked questions about their chosen book. “What can you infer about a character or event in your book? What evidence do you have to support your inference?” the worksheet asked. I’m sure Louisa’s teacher explained these questions to the class. But Louisa couldn’t tell me what infer meant, and my attempt at explaining it was absurd. “It is something you intuit but isn’t said explicitly,” was my pathetically academic way of describing this concept to an eight-year-old. My inadequacy as a teacher and mother felt fully on display. The more Louisa struggled, the more I feared for her inclusion. What would happen if she couldn’t read along with her peers? Would she be put in another classroom? Would her inability to do an assignment be interpreted as some behavioral defiance? I could not help my daughter understand the concept, and I certainly could not help her provide an inference about the book she read, the hilarious Fox and Crow Are Not Friends. A familiar sense of helplessness lodged itself in my chest, and I wished that Louisa and I were still in the backyard, free and light as we slipped across the snow, taking off without any driven purpose and just experiencing the thrill of the ride before we ended up somewhere at the bottom of the hill.
