Friday, April 22, 2016

SHOCK, TORTURE AND THE AMERICAN WAY

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.

Wednesday, April 20, 2016

DISABILITY JUSTICE, POLITICS AND REVOLUTION



This years political season has witnessed a stark dichotomy between establishment politics versus counter establishment, populist movements. Through a disability justice lens we could reflect upon how effectively lives of people with disabilities are represented from each perspective.

Working within current systems are countless agents and agencies battling the status quo and promoting disability rights and program funding. An example? Recently,  here in California,   the Lanterman Coalition, successfully won additional funding to prevent service system collapse.

For now.

But what about the next time and the time after that?  Years of advocacy within an increasingly austere and oppressive system has produced just enough change to avert disaster.  Good but not nearly good enough. Disability justice models take a step back to look at a bigger picture and confront "the ways various oppressions, such as racism, sexism, capitalism and ableism, intersect to influence the lives of disabled people in the arenas of education, self care, empowerment, housing, work, health, sexuality, and recreation".

An oppressive and rigged system is a failed system that agents and agencies are forever trying to reform. I witnessed the State pouring millions of dollars trying to reform abusive and corrupt Developmental Centers.  That failed. And was replaced by a movement to place people from those Centers  into group homes which are aptly called mini institutions. David lives a life of full exclusion in the community at a group home. He is in the broadest sense integrated, but without inclusion in a regular life with non disabled peers (which is his right). This has been  called "the illusion of inclusion". From a disability justice view that approach is wrong headed: "The goal is not to replace one form of control, such as a hospital, institution, and prison, with another, such as psychopharmaceuticals, nursing homes, and group homes. The aspiration is to fundamentally change the way we respond to difference or harm, the way normalcy is defined, the ways resources are distributed and accessed, and the ways we respond to each other".

That is a political and social revolution.

Source cited: Disability Incarcerated

Wednesday, March 23, 2016

OAKLAND'S ATTACK ON SPECIAL ED STUDENTS

Bureaucracies in Disability World are, once again, up to no good.  This blog looks at so called "reform" efforts in special education that are really just a budget cut attack on the kids.

Listening to a KPFA program this evening, I learned about this all too familiar attack on people with disabilities-this time, special education students in Oakland. There, in the name of integration, inclusion and progress, Superintendent Antwan Wilson intends to place all students served by special education programs into General Education classrooms.  For their own good. I have seen it all before. It's the California progressive agenda beginning with Reagan closing hospitals for people with psychosocial disabilities (mental illness), and abandoning them to life on the streets. And more recently California's closing of developmental centers and placing residents into smaller institutions called residential facilities (the illusion of inclusion). All  for their own good.

Inclusion, and a principle of integration is good, of course. But policy makers here, from Reagan on, have hijacked  good principle and law as a paper thin rationale to cut costs and services.   And that is what Wilson is up to in Oakland.

BAMN is a coalition of activists dedicated to fighting for equality "by any means necessary". And, in this instance, they go to a profound bottom line: "the greatest challenge to the education of special needs students today is not their own disabilities: the most severe threat to these students now is the ongoing attack against public education in general and against Special Education in particular....students with special needs are increasingly denied access to appropriate resources, and are instead thrown into the general education classrooms in order to reduce the financial cost to the district. This process is often referred to as “mainstreaming,” or even more dishonestly, as “inclusion” or “integration.” But the reality is a process of exclusion, as special needs students lose access to their only plausible means of truly being included in the learning process. Students who are “mainstreamed” and are stranded without adequate support do not feel “included,” they feel left out and left behind".

Real integration  is not a Reaganesque dump and walking away on the cheap. Inclusion requires an investment in both regular and special education that Wilson and his legion of administrator counterparts will never make...until or unless community members become activists, fighting for equality with schools, school boards and county and state departments of education.

Saturday, March 5, 2016

HANDICAPITALISM IN CALIFORNIA

On February 29th, collapse of the State's developmental service system was averted. The Arc announced that The Assembly and Senate Passed a Two-bill Package in Support of People with Developmental Disabilities:

"The Assembly (MCO = 61-16, DD Funding = unanimous) and the Senate (MCO = the needed 2 Republican votes, DD Funding = unanimous) passed the two-bill package necessary to begin the turn around of the collapse of developmental services.  This is a major victory for our community". In some large part the victory came from an alliance of stakeholders, the Lanterman Coalition, that fought tirelessly for the reform measure. Coalition members include The Arc and United Cerebral Palsy California Collaboration, the Association of Regional Center Agencies, Autism Society of California, California Disability Services Association, California Supported Living Network, Disability Rights California, Family Resource Centers Network of California, People First of California, Service Employees International Union, Cal-TASH, Easter Seals, The Alliance, Autism Speaks, the Alliance of California Autism Organizations, ResCoalition, and the California Respite Association, Infant Development Association, and Educate-Advocate.

Celebration is in order. But not for too long.

In the richest State in the union where  corporations  and billionaires prosper, something is terribly wrong. Income inequality grows along with homelessness and a ripping apart of the social safety net. People with disabilities experience poverty, unemployment and hate crimes.  Service systems are in a perpetual state of near collapse.  This decades long trend has also witnessed the growth of agencies and agents, like the Coalition, designed, out of the moral high ground, to come to the rescue.  But insofar as these agencies seem to have an occasional small win in the larger context of failure (and even scandal), we might want to take a critical look at the larger system. Liat Ben Moshe, a critical sociologist, offers this perspective:

"Human services have traditionally been regarded as moral enterprises that service and assist people in need. However, the latent function of this industry is self preservation and expansion- often at the expense of the users of these services".

Human services in California began with the first asylums, hospitals, and institutions in the mid nineteenth century. While the stated mission was typically one of benevolence, then as now, the benefits accrued at the top for superintendents and employees. Inmates toiled in an agrarian forced labor model, hinted at in what remain of the "sheltered workshop". Reforms have shut down labor exploitation with notable exceptions like the "Boys in the Bunkhouse". The New York Times Sunday edition featured that story of 32 men with disabilities, who were abused for more than 30 years at Henry’s Turkey Service in Atalissa, Iowa.They were paid as low as $65 a month for years, while the farm’s owners collected their social security checks and exploited a provision in the Fair Labor Standards Act that lets certain qualified employers pay subminimum wages to employees with disabilities.

Rather than exploited labor, today's disabled are exploited commodity. Back to human services.  Ben Moshe notes that in "post-industrial times, disablement has become big business. 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 homes (Russell and Stewart, 2001). Capitalism has found a solution to the „problem‟ of unproductivity, for those who are not perceived as laborers. Their bodies generate revenues when placed in institutional beds, such as large institutions, nursing homes, prisons and (some) group homes".

While fighting against the institution industrial complex, too often Coalition agents are part of it. Closing California institutions (we have stubbornly held into them and a failed reform model longer than many states) and placing residents in the community on the one hand is laudable. On the other hand, a failure to create humane and healthy placements in the community has, with medically fragile persons, resulted in injury and death. Moreover, care homes and adult day programs like David's are essentially "mini-institutions" that fail any standard for meaningful inclusion. It's been called the Illusion of Inclusion.

 We kid ourselves to think otherwise.

Perhaps much of the sense of progress is illusory. And for many involved in reform, a self serving delusion. As Ben Moshe observes: "Much of what we conceive of as advancement (e.g., releasing people who were deemed mad from asylums into psychiatric hospitals to receive treatment, the placement of people with cognitive disabilities labels away from large institutions and into group homes) are in fact not signs of progress, according to Foucault.   This research argues, therefore, that the shift from custodial care and institutionalization to deinstitutionalization and community living should not be a seen as the rise and fall of one epoch to be replaced by the other. This is because the effects of the former still linger on in the latter".

So we celebrate a respite and small victory in the midst of systemic failure. The state's Democratic Party and Governor mirror the establishment National party where Secretary Clinton leads the neoliberal charge. And fills her coffers with loot from Wall Street, Big Pharma and the military industrial complex...in exchange for a status quo that will continue to make the rich richer and the poor, poorer.

Beware people on the margins: poor, elders, people of color, and of course people with disabilities.

Monday, February 29, 2016

Guardianship Abuse on Al Jazeera TV Tonight

Guardianship abuse is a national problem that takes away rights and produces a "civil death" among victims.  We have focused on California victims
Including David.  From Nevada comes this special announcement:

Tonight at 6:30PST America Al Jazeera will be playing a 30 minute special nationwide on what guardianship really means and its widespread abuse in the United States.  America’s “Sin City” again demonstrates their leadership in abusing the vulnerable as AJA features Clark County Family Court and its sponsorship of private guardianship abuse over the last 20 years.  Several Clark County victims were interviewed for this special.

Saturday, February 20, 2016

MR KOKESH SURVIVES GUARDIANSHIP!

Phillip Kokesh is a 73 year old guardianship survivor from Florida: "It came out of nowhere at the age of 68 and destroyed my whole life, from top to bottom". Recently, in a widely circulated email, Mr. Kokesh described a trauma most people cannot even imagine-and his extraordinary recovery:

"In my ‘trauma post-experience' phase, after I finally (in retrospect, perhaps even miraculously, considering what I know now!) regained full medical, legal, and financial control of my life- (I had been pronounced “Totally Incapacitated” by a court without either my attendance or defense, on my son’s request!) I went after my tormentors with righteous vengeance; I spent over 70K and more than two years trying to force them into court for a jury trial to face their documented crimes.  The opposing lawyers easily parried and frustrated every (expensive) move, with the full compliance of the court- because of course the court itself had participated in my original defrauding!  It was during this time period that I started following Dr Sugar and Janet Phelan, believing in their cause as my own.  Ultimately, I came to fully comprehend that I was only frustrating and stressing myself with these court actions and enriching people (lawyers and judges) I detested, while they expensively misdirected and prolonged my torture.  I finally had enough: I quit “steeping on the rake.” I withdrew my lawsuits, fired my lawyers, and forgave my enemies.  I recognize there is ZERO possibility of ever achieving ANY justice whatsoever in our corporate court system, so I must continue to be a fool to seek it!  The judge actually used to grin at me while he ruled in support of opposing counsel!  He made it clear that he could play that game til’ the cows came home..."

What a story! Again and again, medical and psychology professionals, err in cognitive assessments that falsely devastate peoples lives with the determination "totally incapacitated". Thereafter, a "civil death" occurs as rights are taken away (even ones that law preserves like the right to visitation) by a cottage industry of lawyers and courts. Often, a misguided or malevolent family member sets the tidal wave  in motion.

Sadly, the story to this point is rather typical. What's unusual is for the ward to persevere and secure legal autonomy and independence as Mr. Kokesh did.

For the guardianship reform movement, it's worth pausing on his view that "there is ZERO possibility of ever achieving ANY justice whatsoever in our corporate court system". For many years, from California to Florida there have been great efforts at the legislative level to create laws to reform guardianship into something humane and just that truly guards and protects people while preserving as much as possible, individual freedom.

Here in this blog we have observed and noted  small victories in reform against a back drop of abject failure. For example, years ago California's major legislative overall of conservatorships was viewed as a victory for reform....by reformers. But case after case has demonstrated that new laws and bureaucracies have added only the pretense of justice over a failed and deeply corrupt system.

While Mr. Kokesh initially joined in with the guardianship reformers, he eventually gave it up:"  I quit that whole guardianship windmill tilt.  I couldn't live with the frustration and negativity anymore.  I did my part; I was both victim and righteous-seeker-of-justice.  I no longer want any part of that paradigm in my life; I have moved on.  There’s more to “Living”, than staying alive.  Can you possibly understand?"

Absolutely! Perhaps the very concept of guardianship is hopelessly flawed.
Internationally, guardianship reform has dropped by the wayside in favor of alternative methods like supported decision making.  Of course, efforts to reform our laws and practices should continue and we support that effort. But a larger movement, the abolition of guardianship, may be our greatest hope.


Saturday, February 6, 2016

CAREGIVERS WHO ABUSE

This blog is dedicated to people with disabilities and all those who act with kindness and justice on their behalf. From there, this blog cuts to a bottom line of ubiquitous abuse, neglect and torture of disabled persons...and further notes that States look the other way and accept abuse as the cost of doing disability business on the cheap. Translation: cheap and empty programs and services,  providing livelihoods to (underpaid) caretakers who sometimes abuse and neglect. And bureaucrats who are happy to collect good paychecks and pretend that alls well. To maintain this status quo, a mythology has been developed wherein caregivers are portrayed as saints who bear the burden of caring for disabled minds and bodies. 

The burden myth falsely diminishes one group as it falsely elevates the other. 

Our take on what's happening in Disability World is not unique and we are not a lone voice. A Social Justice Group from Georgetown University and Kassiane Sibley addressed the topic quite eloquently in a 2014 talk. A post "DisAbused: Rethinking the Presumption of Caregiver Benevolence" introduced Sibley and her topic: 



Much of the conversation about disability centers not around disabled people, but around the caregivers amd family members of disabled individuals. The narrative paints caregivers as universally benevolent, kind, patient saints on earth. This presentation by noted autistic disability rights activist Kassiane Sibley explores the unsettling realities of abuse of disabled people by family and professional caregivers, how we came to this place, and what we can do to reverse the trend.

Those of us who are disabled frequently find ourselves in the position of needing to depend heavily on others in order to navigate our lives. When those we depend upon for our lives and our access to society instead choose to betray that trust, our communities are often far too swift to discount any reports of neglect or abuse on their part, due to the widespread assumption that those who invest their time and energy in providing services for the disabled must therefore be trustworthy, benevolent people, and any lapses on their part should be forgiven due to the “burden” of providing for us. When our lives are framed as burdens on those around us, and our caregivers lauded as heroes simply for attending to our atypical access needs, our own lives and experiences are too easily erased, reduced to mere props in the stories of those who provide for us.

Society’s need to believe in the inherent nobility of those who serve disabled people in a support role must not take precedence over our own needs for personal safety and simple human dignity. Drawing on her own lived experiences, and the stories of our disability community, Ms. Sibley will help us deconstruct and dismantle our preconceptions about the caregiver-client relationship. By disabusing ourselves of the notion that our caregivers are inherently benevolent, and examining these relationships with a more critical eye, we can work together to create a safer world for us all.