Sunday, November 22, 2015

Follow up to "Past the Brink of Collapse"

A follow up to the previous post,  Past the Brink of Collapse which stated "Beyond the sadness though comes anger at the lack of leadership and commitment to persons with developmental disabilities and their families by our legislature and especially our governor."  

The blogger expresses powerful sentiments that point not just to failed leaders, but to a system that seems to replace failure with more failure through generations of failed disability reform. It's heartbreaking/infuriating to watch the Lynn Center fall and so many worthwhile others, even as preferred vendors with little to offer, thrive. The socio economics of institutional closure (a good thing) has shown that States tend to pocket the savings rather than support the community living movement they promote. 

Past the "Brink" of Collapse and Anger at Leadership

Advocates' Blog: Now We Are Past the "Brink" of Collapse: It is with great sadness to myself and the developmental disability community at large that th...

"Beyond the sadness though comes anger at the lack of leadership and commitment to persons with developmental disabilities and their families by our legislature and especially our governor."

Tuesday, September 15, 2015

Student with Down Syndrome forced out of his current high school - WOWK 13 Charleston, Huntington WV News, Weather, Sports

Roy Stevens is 17 years old and attended (successfully) Hundred High School, his local school.  But Roy has been informed that he must leave to attend Magnolia School, an hour drive away.  He had tried that and was unsuccessful.  Roy has Down Syndrome.

The  School Board asserts (it appears illegally), that the "special" kids must go to Magnolia.  But his classmates rallied with a peaceful protest and his parents have filed a complaint.  Its the right thing for Roy's preference to be honored.  But in Disability World its no slam dunk.

We wish Roy continued success at Hundred.  David went from a successful High School experience to middle school where he languished.  The School district in Sacramento circled the wagons, and defended the unprecedented demotion, even falsifying an Individualized Education Plan.  David's story received no media coverage but Roy's has! Check out the link.

Student with Down Syndrome forced out of his current high school - WOWK 13 Charleston, Huntington WV News, Weather, Sports

Wednesday, September 9, 2015


This blog has been dedicated to David and others with disabilities who have been socially marginalized and too often  commodified into pay checks in "handicapitalism". 

In contrast are the myriad of good folks, self advocates and advocates who express, in their actions, justice and compassion. David has met many such persons over the years, but none more extraordinary than Khen Tseten Rinpoche, a Buddhist teacher and scholar. He is described in the last part of this essay.  Rinpoche will be here in The Bay Area soon and the Palo Alto Sangha will host him for several events:

In celebration of the 80th Birthday of His Holiness
the 14th Dalai Lama

The Palo Alto Sangha

Is honored to host Khen Kachen Lobzang Tsetan RinpocheAbbot of Tashi Lhunpo Monastery in exile, for two very special events, also in support of the Panchen Lama-Tashi Lhunpo Project.

Two Days with Khen Tsetan Rinpoche:
Saturday, October 03, 2015

Guided sitting meditation with Khen Tsetan Rinpoche 10:0-10:30 am

First Teaching: 10:30 am -12:30 pm

Renunciation: the First Principal Aspect of the Path to Enlightenment – the attitude of turning away from samsara

NOON BREAK: Tea /Coffee and Cookies will be provided in the Courtyard where seating is available for those bringing lunch.

Guided sitting meditation with Khen Tsetan Rinpoche 2:00 - 2:30 pm

Second Teaching: 2:30 - 5:30 pm

Boddhichitta: the Second Principal Aspect of the Path to Enlightenment – the attitude to attain enlightenment to benefit all sentient beings
Sunday, October 04, 2015

Guided sitting meditation with Khen Tsetan Rinpoche 10:00 -10:30 am

Third Teaching: 10:30 -12:30 pm

The Correct View of Voidness:  the Third Principal Aspect of the Path to Enlightenment – elimination of the obscurations that prevent liberation
DONATION: Your generous donation of $50.00 or more per teaching is requested and may be made payable at the door to: The PLTL Project, Inc.
All proceeds to go to the Panchen Lama-Tashi Lhunpo Project and are tax deductible to the extent allowed by law. NO ONE WILL BE TURNED AWAY.

For further PLTL PROJECT information, visit:

LOCATION: The Cowper Inn Yoga Loft, 705 Cowper St
Palo Alto, CA 94301
For directions:

RSVP by Wednesday, September 30 due to limited space. Register to:

Please, be prompt to the event. You may wish to bring a pillow for floor seating.

Khen Tsetan Rinpoche is a Tibetan Buddhist monk from Ladakh, India who began his monastic life at age seven. He walked to Tibet as a teen to study at the great Tashi Lhunpo. His dream was to receive the advanced Geshe degree in Buddhist philosophy. The Chinese Government occupied Tibet in 1959 and surrounded Tashi Lhunpo with tanks when he was there. The daily public humiliation and torture of monks and the removal of the Panchen Lama made him leave Tibet. After much struggle and accomplishment over the years, he was asked by His Holiness the Dalai Lama to become the Abbot of the exiled Tashi Lhunpo Monastery in India. The 11th Panchen Lama had been kidnapped by the Chinese Government in Tibet, where the traditions and teachings were in danger. Since 2005, Khen Rinpoche has worked ceaselessly to raise funds in order to improve the monastery and increase the number of monks and their support at what is now, unfortunately, the smallest and poorest of the Tibetan monasteries in exile.

Tuesday, September 8, 2015


At Agnews State Hospital in the 1970s there was a lot of create medicating of residents with developmental disabilities. Techs favored some of the powerful antipsychotics of the times like Mellarill  or Thorazine.  Sometimes these drugs were prescribed by our psychiatrists and sometimes not. In all cases, in retrospect, this was the practice of chemical restraint for the purpose of behavior management of persons suffering in that living Hell. Then, in the anti psychiatry movement, it was called psychiatric assault.


The problem is studied decade after decade, like the 1992 example shown below.

Disputing  myths of progress that suggest alls well or at least way better, we cite a recent study from Britain described in Disability Scoop: " New research suggests that many drugs are vasty overprescribed to people with intellectual disabilities despite scant evidence that they provide any benefit. An analysis of medical records for more than 33,000 adults with intellectual disabilities in the United Kingdom between 1999 and 2013 finds one in four were prescribed antipsychotic medication".

One in four!

While the evidence remains scant that these drugs help people with intellectual disability, they may provide a kind of relief for caregivers. Whether they are professionals or parents, they are unequivocally under supported in the age of austerity.  That turns drugs of last resort into second, or even first resorts as medical professionals and ancillary staff legitimize them and misrepresent that they are a solution.

David's Circles of Support advocate for solutions of compassionate care for those who present problems for caregivers. Not the endless stream of poly pharmacy. We support greater aid to caregivers. We support dissemination of research (not supported by pharmaceutical companies) that demonstrate these particular medications, fail to solve concerns, and too often make matters worse.

Saturday, August 29, 2015


On the anniversary of Hurricane Katrina, we pause to remember the tragic loss of lives, displacements and other horrors from that time ten years ago.  But, how accidental was the disaster?  The IPPC has published a science of climate change that demonstrates that climate disaster will continue and worsen at a time when we provide little to no investment in preventative infrastructure.  Moreover, America's planet destroying consumerism continues unabated.  Not preparing for extreme climate, even as we make it worse seems nuts. And demands an explanation. Here's one.

It is commonly and accurately reported that the hazards of climate change fall disproportionately on people of color, the poor and people with disabilities. Most Americans do not experience climate tragedy and so it seems as far removed from daily life as the very vulnerable populations it effects.

My word tragedy suggests that these are the casualties of natural disasters, but from this perspective it all seems very much a function of indifference to the planet and it's more vulnerable inhabitants. The issue has been aptly described as Climate Justice.

In Disability Studies Quarterly 2005, Volume 25, No. 4, Anne Finger addressed this issue with eloquence and precision, in the wake of Katrina. That timely commentary is reproduced in part below titled, Hurricane Katrina, Race, Class, Tragedy, and Charity.  First,  Finger describes the scene in and around New Orleans:

"Throughout the first week after the hurricane, I was struck by the presence of disability. In the New York Times, I read of a woman in the Superdome grabbing a reporter's arm, pleading for water for her daughter, a wheelchair user-- "I'm afraid she's going to have a seizure," the mother cried. On National Public Radio, I heard the voice of a man calling out, "Dilantin! I need Dilantin!" The president of Jefferson Parish broke down as he told of a man who'd been reassuring his mother, institutionalized in a nursing home, that help was on the way, only to learn that she had drowned--on Friday, five days after the storm. And, of course, there is that image of the woman in the wheelchair, dead outside the Convention Center. Now, I am reading of the discovery of the dead in nursing homes and hospitals, and of some hospital staff saying they deliberately killed patients who were on the brink of death".

She follows by expressing an outrage well known to protestors of injustice, here for the discarded and forgotten of New Orleans:

"I've been enraged on so many different levels these past weeks--at the way that disabled people seem to have been forgotten by those who ordered the evacuation of the city and the rescuers, at the appalling conditions everyone--disabled and nondisabled--who sought shelter in the Superdome and the Convention Center endured. I was heartened when I read of Jesse Jackson and other African American ministers and Kanye West, who stated the obvious racial dimension to this disaster. That this disaster has had an especially horrific impact on disabled African Americans is clear.

Finger then questions, as do I, whether calling the victims of Katrina, victims of "tragedy" evades the principle of justice, both climate justice and disability justice.

"I do think we need to rethink our use of the word "tragedy" when applied to this. While these events were undeniably tragic, they were hardly inevitable. For a start, let's think about why the levees broke in the first place. Our nation as a whole may have problems with its infrastructure, but these problems are particularly acute in poor communities. Anyone who has ever wheeled or walked along the sidewalk in an upper middle class neighborhood and also wheeled or walked along one in a poor neighborhood knows this difference in their bones. Infrastructure--from sidewalks to curb cuts to levees--is under-funded in poor communities. That a hurricane would hit New Orleans was inevitable. That the levees, which had been neglected during both Republican and Democratic administrations, were not adequately maintained was also a known fact. On another level, nearly all climatologists predict that increasing sea temperatures, as a result of global warming, will increase the ferocity of hurricanes. In the September 19, 2005 New Yorker, Elizabeth Kolbert makes a compelling case that while the question of whether Katrina's destructive power was increased by global warming is scientifically unanswerable, "climbing CO2 levels will lead to an increase in the intensity of hurricanes, though not in hurricane frequency....Meanwhile, as sea levels rise–water expands as it warms–storm surges, like the one that breached the levees in New Orleans, will inevitably become more dangerous."

And then, as we have reiterated in this blog, Finger cuts to the chase and emphasizes that failed government policies were a critical source of human suffering.

"I think we need to enter into the national dialogue, loudly and clearly, stating that these deaths of persons with disabilities were not inevitable tragedies, but were the result of government policies that ignore our needs. We need to say that this neglect does not hit all disabled people equally, but was especially lethal for the poor, predominantly African-American, residents of New Orleans and surrounding communities. We should also demand that, as the dead are counted, the powers-that-be also collect statistics on how many disabled people are among the dead. How many were found in nursing homes? How many were found in community care facilities? The answers to those questions will shock the conscience of our nation. We need to reach out to those disabled people who survived, and do all we can to enable their voices to be heard".

Disability injustice is not incidental. It is often not accidental. How many disabled people were among the dead/injured of Katrina or Sandy or the heat waves that grip much of the nation this summer?  We know that institutional abuse and neglect is a cost of doing business whether it's a nursing home or a developmental center.  Let's add climate to the list of abuses. We have supported legislation for conservatorship reform and funding for the California DD system.  But, too often  these legal reforms are just recycling of injustice. After all, in California and across the nation we seem to eternally reforming and getting nowhere. Fast.

Nevertheless I agree with Finger who states, "I think this is a time when it makes sense to contact your senators and representatives and get them to ask some hard questions in the hearings that will be happening in the upcoming weeks. What were the plans for evacuating institutions--nursing homes, community care facilities? What were the plans for communicating with people who are Deaf and hearing impaired? How was lifesaving medication going to be delivered to people who had been forced to flee? In short, what thought was given to the lives and needs of disabled people? We should be writing letters to editors, calling reporters, demanding that an independent commission to investigate the response to the hurricane be held; we should be talking in our classes and to everyone we can about the impact of Katrina on disabled people, and especially on those in our community who have the fewest resources".

The point was true when written 10 years ago. With minimal progress it is evermore true today.

Sunday, August 16, 2015

David Goes Backwards-Literally

Ever backwards. Literally.  That's a recent oddity added to David's regression under board and care (bored and scared) supervision.  Inexplicably and suddenly he will stride backwards without looking presenting difficulty to pedestrians behind him, but more importantly danger to David (if he should back into into the street or down a step for example).
This weekend he had a bad scrape on his leg.  When asked about it, David replied, "Program" (day program). But he is unable to elaborate and a cloak of silence emanates from providers who report only good things.

Across life domains David's life's skills continue to deteriorate. We are allowed to visit with David for 24 hours, twice a month, and with so little time we are unable to understand these regressions,  much less effect positive change. We are powerless.

Most citizens would like to believe that residents of board and care, or developmental centers, or nursing homes are cared for adequately. It allows for a peaceful nights sleep.

These settings however are institutions where, too often, neglect and even abuse are common. As Taylor, Bogdan, and Racino (1991) observed long ago, many “homes” in which people with developmental and psychiatric disabilities reside are agency owned, licensed or certified, which means they must follow codes and regulations, which often limit the residents’ actions and choices. David, for example, is allowed NO choices. The staff is accountable to the agency, not to the residents. The agency in turn seeks only to perpetuate itself and justify the pay checks of providers and administrators. Reports on David's regression always read as progress since only progress produces pay checks.