Saturday, August 27, 2016


"The U.S. Department of Justice on Tuesday sued the state of Georgia for allegedly segregating and mistreating thousands of public school students
with behavior-related disabilities in violation of the Americans with Disabilities Act". So wrote Tony Pugh Disability Scoop (8/24/16).  Segregation means isolating people with disabilities from their non disabled peers- it is harmful, wrong and illegal. And the DOJ was right to sue the State of Georgia on behalf of those students as a violation of the Olmstead Act.

Background-On June 22, 1999, the United States Supreme Court came to the historic decision that  segregation of persons with disabilities constitutes discrimination in violation of title II of the Americans with Disabilities Act.

David enjoyed the promise of Olmstead from K to high school as he studied in a special day class at his elementary school and later at a local high school. Then there was ample and wonderful opportunities to interact with "regular" kids. But later, in Sacramento things went terribly wrong. He went from an integrated high school setting to a very segregated middle school. He regressed and failed to develop critical skills that would have promoted a more independent life later on. As Pugh wrote "This can deprive (children) of developing the social and coping skills that help them function in mainstream society".

Back then requests for advocacy and complaints were initiated based on David's right to a community based, non segregated education. But unlike the Georgia case, agents and agencies failed to take up his cause.

And to this day, California misrepresents that David lives in accordance with Olmstead at a care home, attending a day program.  These mini institutions are tiny warehouses of segregation where David and unfortunate others live  quite apart from the mainstream.

It's illegal. And just plain wrong.

Sunday, August 21, 2016


Today's NY Times article, Becoming Disabled, fosters a critical national conversation on the topic of disability. It's complicated. 

Confusion arises because unlike many other marginalized groups, "disability" is a heterogeneous grouping of conditions that vary in severity and age onset. 

For example, consider people with intellectual disability or severe mental illness. It's unfortunate that articles like this one assume their civil rights battles are a thing of the past: "Starting in the 1960s, a broad disability rights movement encouraged legislation and policy that gradually desegregated the institutions and spaces that had kept disabled people out and barred them from exercising the privileges and obligations of full citizenship". 

In fact, today large swaths of these people are Institutionalized, neglected and abused in nursing homes, group homes and other facilities. Way too many of them have had their civil rights stolen away in guardianships that purport to be for their "best interest". 

But much  like the prison industrial complex, this institution industrial complex profits with persons turned into commodities. Follow the money. 

Taking bows for the deinstitutionalization movement is way to premature and feeds our collective denial that a very significant contemporary tragedy is somehow a thing of the past. 

David's life at a group home and day program is held up as an example of the success of deinstitutionalization since he technically resides in a community. But even while integrated in the broadest  sense he is fully excluded from his right to live and interact with his non disabled peers and lead  a regular life. Moreover his civil rights have been denied through a general conservatorship so pervasive that even his everyday preferences are denied by a professional guardian who decides all matters for him.

David and many like him ought to be championed  in that national conversation on disabilities.

Friday, August 19, 2016

Disability, Profit and the Rise of ‘Handicapitalism’

(This article was first published in San Jose Inside at

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.

Tuesday, August 16, 2016


An autistic child of nine was held face down. And restrained that way by two adult employees. One might argue that the Anova Center in Concord resorted to these extreme measures once or twice in some kind of emergency. But the Mercury News reported recently that this kid, Stuart, was forced to that position 92 times during one school year. And he wasn't held down for a moment or two either. At least once he was restrained for an hour and a half.

Cruel but not so unusual.

Institutional abuse is routine and a cost of doing disability business at facilities like Anova. Now and then they are caught and children and adults with disabilities are freed from  these contemporary versions of 19th century snake pits.

Stuart has moved on.

"He's doing much better," his mother said. "It's night and day."
While glad that Stuart has seen the daylight of a better placement, we grieve over countless others who remain in the very dark night of institutional abuse,

Tuesday, July 26, 2016

The DNC:"Disabled to the Front"

Here in Philadelphia, activist groups and rallys are all around the DNC. The 4 mile
Marches down Broad street to the Convention Center have been long, hot and inspired.

Many memorable marching chants have been sung out and yelled. But I have a favorite-

"Disabled to the front,
"Disabled to the front"

What happens next is a parting of the moving crowd as  people in wheelchairs advance  to the March front lines.

"Disabled to the front"

That would be a fine guiding principle for American society today.

Sunday, May 1, 2016

Why is critical interaction with disability missing from academia?

Why is critical interaction with disability missing from academia?:

Class, culture, ethnicity, gender, sexuality -- all established topics in the discourses of sociology, literature, communications, history and political science. Glaringly absent from that list? Disability.

A Critical Disability Studies Working Group is working to highlight how ableist assumptions about the body, cognition and perception promote a limited range of understanding what it means to be human.

Friday, April 22, 2016


You may not know that American helping professionals continue to use electric shock as a form of treatment for people with disabilities. Legally. This despite  the fact that the  United Nations Special Rapporteur on Torture has declared the use of electric shock as torture.  Referencing  American torture of so called enemy combatants, President Obama infamously remarked that "we tortured some folks".

On April 22, 2016, the Autistic Self Advocacy Network (ASAN) commented on the proposed FDA rule to ban the use of electric shock devices:

"...aversive interventions – are indeed torture and everyone has the right to be supported with dignity, humanity and respect. The use of contingent electric shock and other aversives have never been appropriate and have always constituted an unscientific and unethical practice...Today, the Food and Drug Administration (FDA) released a proposed rule to ban the use of electrical shock devices."

Maybe the FDA can finally correct this national disgrace.