Op-Ed: Disability, Profit and the Rise of ‘Handicapitalism’

Too few people drop by the Agnews Cemetery and Historical Museum in Santa Clara. Agnews, for those who don't know, was a local state-run institution built originally in 1889 for people with mental illness, and later on for people with intellectual and developmental disabilities. Some say asylums were built to protect vulnerable citizens. Others say these institutions stand as tributes to social control, confinement and worse. Agnews closed in 2009.

Photos, artifacts and documents survive and are archived in this small but artfully packed museum. Docents are amazing. When I visited earlier this month, I had the place to myself. The century-plus history of Agnews reflects the complexity, in shades of heaven and hell and dollars and cents, of our collective attempt at relating to mental impairment. It has not gone well.

What follows are two disclosures and a few glimpses at the last 100-plus years. First disclosure: I arrived at Agnews in 1976, employed first as a direct caregiver and later as a teacher over the next three decades. To be clear, there was neglect and abuse. There was also a lot of love, laughter and caring. That good stuff occurred despite a state bureaucracy that seemed to value documents over people. Funding, you see, was tied not to personal well being, but to the paperwork we seemed to generate by the ton. I struggled to make sense of it all.

Disability, it turns out, has always been about the money. I first heard Professor Liat Ben-Moshe speak about this topic on KPFA’s “Against the Grain” in 2014.

“In post-industrial times, disablement has become big business,” she observed in her doctoral dissertation. “A single impaired body generates tens of thousands of dollars in annual revenues in an institution. From the point of view of the institution industrial complex, disabled people are worth more to the Gross Domestic Product when occupying institutional ‘beds’ than they are in their own home.”

It wasn’t always this way.

The museum encased simple ledgers of old Agnews, show carefully scribed line item expenses for modest supplies. At the turn of the century, institutions were a self-sustaining enterprise. Old photos show an economically self-sufficient community where residents labored. There was farming, maintaining grounds, sewing, laundry and even caring for one another, as the more able became caregivers to the less able. Of course all were unpaid, allowing for the economic viability of the institution. Cast out from society at large and skilled only at the institutional life, residents almost never left.

Missions of habilitation were eventually abandoned. Overcrowding led to conditions of terrible neglect and abuse. The early 20th century brought horrific and primitive medical interventions including surgical lobotomies. The museum displays an ominous vintage electroshock device.

The pseudoscience of eugenics proposed that half of all intellectually disabled people were criminals or potential criminals. From 1909 to 1950, Agnews staff performed 977 involuntary sterilizations, as California led the nation in that procedure and inspired Adolph Hitler and the Nazi Eugenics program (not referenced at the museum).

Researchers and journalists in the 1960s exposed horrific institutional abuses in the east at Willowbrook and in California.

“I couldn’t believe my eyes,” a foreign observer of Sonoma State Hospital once remarked. “It was worse than any institution I have seen in visits to a dozen foreign countries. … In our country, we would not be allowed to treat cattle like that.”

Then came public outrage, and, slowly, legislation and improved conditions. Even as institutions across America were closing, some were chasing money tied to reform. California wasted millions of dollars with a last-gasp attempt to makeover their institutions in the 1980s and early 1990s. We invested in prettier furniture and pretend programs that began and ended as surveyors came and went. Great photo-ops were generated—some are now framed museum pieces.

But pretense was expensive. By 2001, it cost some $163,000 per year per resident to prop up this California illusion. Institutions finally burst their budgets. Agnews closed and California drummed up plans to close the rest of the institutions. That was a good thing.

In fits and starts, over a couple of decades, residents are moving out of California institutions to community care homes. On the cheap, too: starting at about $12,000 per person. Some got sick. Some died.

Though better than their decades-ago counterparts, these homes have been called miniature institutions. Even as a new generation of bureaucrats commands substantial salaries, the point of service in care homes is still impoverished. I've seen it too many times through David's eyes.

Second disclosure: 10 years after I began working at Agnews, my son David was born with Down Syndrome. I caught a glance of pity from the museum docent when I mentioned It. No pity needed: my son is among my greatest blessings and a life force to be reckoned with!

But David now resides at a community care home and attends a day program (long story) where impoverished points of service are the rule. California, in this current era of prosperity, recently and barely survived yet another budget shortfall to the disabilities service system. Something’s not working.

Ben-Moshe suggests it’s wrongheaded to replace one form of control with another—like swapping a big institution for community based group homes and day programs. Instead, she says, we ought to “fundamentally change the way we react to each other, the way we respond to difference or harm, the way normalcy is defined and the ways resources are distributed and accessed.”

Until then, nice but mostly untrained, underpaid caregivers oversee David’s meaningless Crayola scribbles and decide his life for him, rather than helping him meet his independent living benchmarks. It’s a scene like those that played out in the not-so-distant past at Agnews. It’s a scene that to me, as a father and student of history, is too much like Agnews.

Robert Fettgather is a teacher, father and co-founder of the Coalition for Elder and Dependent Adult Rights (CEDAR). The opinions expressed in this article are the author’s own and do not necessarily reflect those of San Jose Inside.

3 Comments

  1. Robert you’re on point with your entire article, and I thank you for that. Right now I’m going through some stuff (long story) myself.

    One thing I’ve heard about the “Community Care Homes” in addition to having impoverished points of service is they also contribute to the panhandling problem. They cut corners everywhere so they can get state funding, even on their patients. I know many of them just give their patients $10@day fun money, then kick them out until the sun goes down.

    They spend $10 on a pack of smokes and a beer, then head out to “Work” to panhandle. It just boggles my mind that this isn’t considered against the law.

  2. A thought provoking explanation of a very difficult problem for society.

    There appear to be no good solutions that don’t have one pitfall or another.

    I tend to be on the cynical side and have little faith in government institutions which are ultimately directed by politicians and staffed by careerists motivated by their government paycheck and benefits.

    This is where society really needs selflesh people with big hearts, and in my sketchy knowledge of the issue these people are found in religious institutions and communities. The secularization of society really made the problem worse.

    I will quibble with the title of this article: “Op-Ed: Disability, Profit and the Rise of ‘Handicapitalism”

    I would NOT call the “care for cash” industry “capitalism”; no one is scrimping and saving and dreaming up ways to make a bigger disability industry. I would call it “foraging for cash”; social worker “hunter-gatherers” are simply combing the underbrush of government bureaucracies looking for Easter eggs that have government checks inside.

  3. – “The museum displays an ominous vintage electroshock device.”
    Electroshock, now called Electroconvulsive Therapy, is described by the Mayo Clinic as causing “changes in brain chemistry that can quickly reverse symptoms of certain mental illnesses. It often works when other treatments are unsuccessful.”

    – “The pseudoscience of eugenics…”
    Eugenics is not a pseudoscience. Selective breeding is a scientifically proven method of refining a genome, no matter if the desired results are blue-eyed blond humans or cute cocker spaniels.

    For an example of a pseudoscience, I direct your attention to Professor Ben-Moshe’s fairytale belief that humans can, absent the process of natural selection, fundamentally change. History suggests that those of you waiting for that to happen should cross your fingers, chant “I do believe, I do believe,” and then get out your checkbooks.