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.

Friday, February 5, 2016

ARROGANCE AND GUARDIANSHIP-WHAT'S THE ALTERNATIVE?

The obscene arrogance of guardianship might be best expressed in the belief that the guardian can divine  what's in the "best interest" of the ward. Davids guardian Kay Carrigan and her successor Betty Wright never determined Davids preferences for his own life. They never bothered to try. Instead both claimed to possess an almost supernatural wisdom for deciding where David would live, with who, and what he would be allowed to do. That kind of power breeds arrogance. All Davids rights disappeared. While current U.S. laws allow for this kind of "civil death", these actions are just plain morally wrong.

More progressive alternatives are to be found elsewhere. What follows is a story with a far more enlightened point of view from the Mental Disability Advocacy Centre (MDAC) that states in part that  the "will and preferences of persons with disabilities should be the deciding factor when courts make decisions which affect the lives of people with disabilities, and not the subjective opinions of third parties" deciding best-interest. Exactly!

The story  focus is on a Finnish man with intellectual disability, Arri-Matti Virtanen. The article concludes by citing the UN Convention on the Rights of Persons with Disabilities (CRPD) the most important and progressive statement on the rights of people with disabilities on the planet. Mr. Virtanen's homeland, Finland, has yet to ratify the CRPD. Neither has the  US.

Here is the story:

In 2002, Mr. Virtanen was placed into the care of a foster family in Northern Finland, around 50 km away from his home town in the south of the country – where his biological parents had originally abandoned him. In 2007, he was taken back to his home town and placed in an institution for children with disabilities. Upon turning 18, he decided to move back in with his foster parents as he considered them to be his real family. He was not there for long: in 2009 the authorities decided to remove him and place him in an institution in the town where he was born, against his will.
At the request of Finnish authorities, Mr. Virtanen was then placed under the authority of a public guardian, again without his consent – a decision which he attempted to challenge in the courts. At both the local and then appeal courts, judges refused to accept his claim and will to live with his foster family.
Having run out of options in Finland, Mr. Virtanen instructed lawyers to fight for his rights at the European Court of Human Rights (ECtHR) in Strasbourg, France. In the case, he argues that his removal from his foster family, placement in an institution, and then placement under public guardianship fundamentally violates his right to family life.
In its intervention, MDAC underlines that such treatment is in violation of international law, and that it constitutes disability-based discrimination. The legal submission points out that the ”will and preferences” of persons with disabilities should be the deciding factor when courts make decisions which affect the lives of people with disabilities, and not the subjective opinions of third parties about what is in their “best interests”. Refusal to give effect to the autonomy of people with disabilities results in numerous human rights violations, and continues to be a widespread problem in countries which maintain paternalistic guardianship laws such as Finland and numerous other countries across Europe.
Guardianship regimes affect even the most personal aspects of the lives of people with disabilities, including their private lives and where they choose to live. MDAC’s submission to the ECtHR explains that international law now demands a shift away from a charitable approach to dealing with people with disabilities, towards a recognition of them as holders of human rights: “[P]ersonal relationships and one’s choice of a place of residence are an inherent part of a person’s autonomy, independence, dignity and self-development, and are central to a person’s independent living in their wider community.”
MDAC also draws reference to the UN Convention on the Rights of Persons with Disabilities (UN CRPD) in the intervention which, among other things, promotes the right to able to choose one’s place of residence. Finland is one of the last countries in the European Union that has yet to ratify the UN Convention on the Rights of Persons with Disabilities (CRPD). The CRPD is now globally recognised as the most authoritative statement of the rights and freedoms of people with disabilities. MDAC calls on the Government of Finland - which has 40,000 people with intellectual disabilities, and 1,749 people under guardianship orders - to ratify the Convention without further delay.



Monday, February 1, 2016

DEAR GOV BROWN

 
Letter to the Governor
Dear Governor Jerry Brown,
Here is what your current budget for developmental disabilities provides. At a Town Hall Meeting last week in the East Bay, over 120 parents, siblings and their family members with disabilities shared their anger and frustration. They were given a 2 day notice that their paratransit company would be changed from MV to A-Paratransit. Yes, two days!! The new company was awarded the new bid, in part on the basis that they were the lowest bid, one of the state requirements for contracts. Well here is what your low bid within your current budget buys!
One mother has three children with disabilities. "Your transportation system is a mess. They didn't pick up my 2 daughters and was told that drivers had no room on the bus for them. It was 12 PM by the time the drivers came to pick them up. I have a right to be angry. They are my daughters! My children have been crying when they can't get picked up to go to their program. They have been over 2 hours late getting home!"
Other parents literally called the police when they couldn't get through to the transportation company. Their adult children had been on the bus since 2:30 PM without their medication or food. They needed to get their meds to them! The bus finally showed up 3 houses down the block at 8 PM! (5 ½ hours on the bus, can you believe it!) The parents asked the Regional Center Representative and the bus company, "How long can you sit on the bus and not pee?" Another bus dropped off a young woman in her wheelchair in the middle of the road on a very busy street in front the family's home. The parents were irate! They are now driving their daughter themselves, even though they don't have an accessible vehicle. They don't know how long their backs will last when transferring her in and out of their car.
Self-advocates spoke for themselves. "I have a pet and I have to get home to feed him on time." Others exclaimed that they couldn't help "wetting and pooping in their pants." Or "I need to eat and take my diabetes medicine in the morning, but the bus now comes at 6:30 AM instead of 8 AM; I just can't get ready in time."
"My brother in law has special needs. He is special. He has a soul just like all of us. How can you treat him like this?" If this is all the money that the State has to spend on the transportation and support services of our most vulnerable, we should be ashamed! Pass the 10% budget increase NOW!
Come on California. Really? We're better than this!
Tim Hornbecker, Director
Advocacy and Community Organizing tim@thearcca.org

Saturday, January 30, 2016

DISABILITY INCARCERATED

David's life over the last ten years has been one of segregation in custodial settings  that make me cringe: at Miles P Richmond middle school where his teacher, Ms.Sheila stated "he is not the brightest bulb in class". And at the Charibel Care  home where he was put to bed on bright warm summer nights at 530pm (for staff convenience) and sat before Tagalog television about which Conservator Kay Carrigan cynically joked, "at least he is learning a foreign language".

Disability Incarcerated is a book, a collection of essays, that takes a hard look at the so called "care" (really, institutionalization) David and others get everyday: "incarceration occurs and is made out to be normal, natural, politically necessary, and beneficial. Sites of incarceration, such as medical institutions, nursing homes, and prisons, emerge and take shape in interaction with each other as various populations are sorted, identified, and treated according to rationalities and practices which, while different in many ways, all mark certain people as deviant and thus justify controlling what they can and cannot do"

David is told, moment by moment, what he can and cannot do and how ever you package it, that's tyranny. David's life, per Alta Regional Center, is all about community living, but in reality David is incarcerated at the care home home and at a day program.  He is in the community but completely apart from it.  David and his fellow "consumers" are inmates in a disability system that provides paychecks to many in what has been called handicapitalism.

Watching David's life, I am forever flashing back to the oppression, neglect and abuse I observed at Agnews State Hospital. In fact "there (are) similarities between community-based services and medical institutions. Community-based services are often run with a similar medical model and an asymmetry of power between staff and consumers". The staff who rule David's life claim accountability to him but that's pure delusion.   Instead,  "The staff is accountable to the agency, not to the residents, which often creates conflict in the “home,” and funding is based on the facility, not the individual who resides in it. These homes are more like small institutions that do not have gates; they are not true to the spirit of independent living and community inclusion."

Staff are indeed accountable to the agency that pays them. Not to the clients they are supposed to serve. Our recent post on deep politics asserted that bureaucracies designated to serve others often degenerate into failed systems that serve only themselves.

Alternatively, Disability Incarcerated calls for social justice: " Disability justice represents a conceptual shift from notions of advocating for rights or equality in a system that is oppressive and unjust to begin with (such as increasing employment for people with disabilities in an unjust capitalist marketplace and discussing “community services” only through the discourse of for-profit health care system) to advocating for social change more broadly. Disability justice activists 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. 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."


Friday, January 22, 2016

DAVID'S IRON CAGE

Safety is a good idea. We all tend to prefer  more safe and secure circumstances over what is unsafe, and insecure. But security extremes can stifle and suffocate the life breath of our freedoms. Take Disability World for example. Bureaucracies entrusted with serving people with disabilities risk jailing them in over protected lives. While bad for clients, these practices help preserve the bureaucracy itself. Clients become imprisoned in what sociolologist Max Weber called the "iron cage". Mike Lofgren discusses this in a new book, The Deep State:

"Weber recognized that while bureaucracies are supposed to be based on rational decision making, actors within them end up behaving in an irrational manner. Modern societies create administrative structures such as law enforcement and courts to safeguard the lives and civil liberties of the law-abiding, but institutional logic impels those agencies to violate those same liberties because, officials insist, they must do whatever it takes to “keep us safe.”

David is as safe as safe can be. He is safeguarded and babysat at a care home and at an adult day program overseen by Alta Regional Center. He withers away in a world void of meaningful stimulation. Along with Alta, David's conservator/guardian vigilantly promotes that extreme safety. But along the way they have eviscerated David's civil rights, liberties, and any chance at self determination.

Tuesday, December 29, 2015

How to Close the Gap Between Us and Them

How to Close the Gap Between Us and Them



"We can step outside of our tribal instincts and say, “It’s not just the people in my tribe that matter, everybody matters. And everybody matters equally"



Whatever the group identity, we could get over the duality of us and them. The myth of abled and disabled is a theme of this blog, and one to move beyond.

Sunday, December 27, 2015

Intersectionality Isn’t Just A Win-Win; It’s The Only Way Out


"Cultural patterns of oppression are not only interrelated, but are bound together and influenced by the intersectional systems of society. Examples of this include race, gender, class, ability and ethnicity.” 

Intersectionality Isn’t Just A Win-Win; It’s The Only Way Out