THE BLACK STORK
About 3 percent of babies are born with one birth defect or another, from cleft palate to the most common of all birth defects: Down syndrome. It seems to have been ever so. The first recorded instance of a baby born with an intellectual disability is found on the ancient Egyptian Ebers Papyrus, a medical record from 1550 bc. For most of human history, infanticide was seen as the appropriate response.
Anthropologist Joseph Birdsell estimates that in Neolithic times 15 percent of infants were killed because of disability or to avoid having to feed them. The Greek historian Plutarch reported that Spartans convened panels of wise men to decide which disabilities were severe enough that the infants should be abandoned out of doors. Plato and Aristotle held planned infanticide to be reasonable state policy. The Romans agreed. Then came biblical times.
Zombie Elvis playwright Nik Neiss, in the hat, poses with friends.
The “Rules for Priests” section of Leviticus (21:18-22) states: ‘‘For the generations to come none of your descendants who has a defect may come near to offer the food of his God. No man who has any defect may come near: no man who is blind or lame, disfigured or deformed; no man with a crippled foot or hand, or who is a hunchback or a dwarf . . .” Even Protestant reformer Martin Luther said he saw the devil in a disabled child and advised killing the child. (This history haunts religion to this day; in the spring of 2012, an Italian priest barred a disabled boy from receiving communion, citing tradition.)
These anti-disability ideas were the norm for eons. Just a century ago, Chicago physician Dr. Harry J. Haiselden made a name for himself killing disabled babies. He claimed to have killed six babies himself, some by neglect and some by narcotic injections, and created a film to promote himself called The Black Stork. In 1915 he was put on trial for the death of one of those babies. The jury acquitted him. Remarkably, he received support from the most prominent disabled person of his day, Helen Keller, who noted “a human life is sacred only when it may be of some use to itself and to the world.”
As infanticide fell out of common practice, the question of what to do with the inevitable percentage of disabled children in every community became a complicated part of U.S. governance. Names we now take as sheer insult, “idiot,” “imbecile,” “moron,” and “feebleminded,” were used by states to indicate levels of disability: Morons were smarter than idiots, for example. The Massachusetts Legislature’s 1846 census counted “361 idiots, exclusive of insane persons.” The document went on to note that these people “poison the whole moral atmosphere.” To prevent such poisoning, institutions were founded to confine the disabled and the insane, often together, sometimes in chains, sometimes in “crazy cellars.”
The true sea change in the Western world’s reaction to disability was, astoundingly, brought about by the Nazis, who killed somewhere between 100,000 and 250,000 disabled Aryans, young and old, many pulled straight from state care institutions. It was against this background that the American civil rights movement arose, and Brown vs. Board of Education was decided. What does that historic anti-segregation decision have to do with Zombie Elvis? Everything.
Neiss’s generation is the first to be, in education parlance, “mainstreamed.” Before 1975, most of the then 4 million disabled children in the United States were excluded from public schools. Inspired by Brown vs. Board of Education and the civil rights movement, parents mounted legal challenges to the separate-but-unequal education of the disabled. Two landmark cases, Pennsylvania Association for Retarded Children (PARC) vs. Pennsylvania, in 1971, and Mills vs. Board of Education, in 1972, drew on the equal protection guarantee of the 14th amendment as described in the decision of Brown vs. Board of Education to establish that children with disabilities had the right to free, appropriate public education in the least restrictive environment: ordinary schools. It was only this generation, the children with disabilities born around or after 1975, who began to be fully educated.
EXPECT THE UNEXPECTED
Neiss went to Dowling Elementary School in south Minneapolis. “Before Nik, [the disabled] weren’t even allowed to be in school,” remembers his mother. “It was such a difficult time. I just refused to sign the paperwork they kept giving us. I wanted him in a neighborhood school. I wanted him to be included. They wanted him in an institution. They wanted us to stop pushing. But that’s how he learned to read. I had to go to bat for him every day. I used to wake up in the middle of the night, my heart racing. I’d say, ‘Lord, it’s fine if you want me to do this, but send me the people I need.’ And he did.” People like Norm Munk.
Raised in New York, Munk came to Minnesota for his Edina-raised wife and for a job at the Wilder Foundation. He took over Partnership Resources, Inc. in 2000 with the vision of providing greater opportunity to people with disabilities. “The thing people fail to grasp is how many opportunities are denied to the disabled,” he says, as he checks in with people at the Minneapolis facility—men who communicate by sign-board and women with hands like a new bird’s wings, thin and folded in.
“Think about the opportunities, the expectations you present to your own child. You expect her to read—you provide everything to make it happen. If it doesn’t happen you badger and double down.
And then, what a world that opens up for her!” Munk says. “But that’s not how society has traditionally approached the disabled. Children with disabilities were in the past raised without expectations.
“What many people fail to understand is that my clients—this could be any of us. We’re walking across the street—we get hit by a car. Or we’re sleeping in bed—we have a stroke. Now we have a traumatic brain injury. That’s where the idea for the art at PRI came from, in fact. My grandfather had a stroke. Everything was paralyzed on his right side. He couldn’t talk. He was despondent. My grandmother, who was the smartest woman, put a paintbrush in his left hand. He came back. He painted the most extraordinary pictures—beautiful landscapes of upstate New York.
“You could, tomorrow, find yourself in the exact situation many of my clients are in, as an extraordinarily high-functioning person trapped in a body that doesn’t function. Imagine! Last year I had back surgery—I was in the hospital just marveling at how lucky I am that I can talk, that I can express my needs. Imagine being in that situation and not being able to say this hurts, or this is alarming. I am always amazed we will spare no expense, do anything for a surgeon who has a car crash and finds himself trapped in a body that he suddenly can’t control, but if someone is born that way—we do not see them as worthy of the same effort.”
FOLLOW THE MONEY
Effort, of course, in society, is expressed in terms of dollars. Recent years have been brutal for social service agencies such as Munk’s because of state budget cuts and lack of increases in funding despite an increase in need. Minnesota has about 110,000 individuals on full medical disability under the age of 65, the result of birth defects, car crashes, strokes, and what have you. The state spends $1.2 billion a year to care for them, and that number has been flat for a long time.
Munk says that his organization is about 20 percent behind inflation over the past seven years and hasn’t had a cost of living increase in five years. He makes up the gap through fundraising and entrepreneurship: Last year Target carried greeting cards featuring art created by his clients, which brought in several thousand dollars, and an annual fall benefit raises $50,000. In addition, Munk has found support from private foundations.
Steve Larson, the public policy director for The Arc of Minnesota, which advocates for the disabled, says it’s difficult to quantify exactly how state belt tightening has affected the disability community over the past decade, mainly because Minnesota has a highly individualized approach. Someone who needs help only in the mornings and evenings, for example, is allocated fewer dollars than someone who needs help around the clock; likewise, someone who can take a city bus is allocated fewer dollars than someone who needs specialized transport.
“The budget has held steady at $1.2 billion,” Larson says. “There are about 4,000 people on a waiting list for services right now. These could be people waiting to live in a group home, waiting for employment supports, waiting for a PCA.” Personal care assistants, or PCAs, are a top concern right now because their wages have been reduced again and again since 2002. “We’re at something of a crisis, or at least a critical point in time,” Larson says. “If you want to keep qualified staff you have to eventually give them some raises, and we’re afraid that qualified people are leaving the profession, to be replaced with less qualified people.”
To deal with the shortfall, Larson says, the state is banking on legislative changes in 2013 dubbed MnChoices. Advocates say the changes would allow the state to spend money even more effectively by having, for example, a single staff member monitor a dozen or more disabled people via Skype, instead of in person, with attendant technology to tell whether the stove is on, the water is running, and so on. Through the program, every Minnesotan receiving assistance for a disability will be individually assessed, evaluated using a single statewide standard, and allotted the minimum amount of care that will allow them to be maximally independent. Many worry that the decrease in funding will lead to the disabled returning to the easiest place to put them: out of sight.