Autistic Governance

 

Autistic Governance

Autistic Governance

An Initiative to extend  the self-advocacy and self-determination movements to the next level by creation of ‘Autistic Governance’ in Autistic Housing of all kinds, including in Farmsteads, and closed communities.  Project’s objective is to promote, advocate, and engineer this initiative.


Update Jan. 2019: Self-Determination – Analysis & Solutions

Why the autistic self-advocacy bandwagon is getting nowhere, except as a vehicle for appropriation of public funds?

We begin with a definition of self-advocacy by wiki: “The self-advocacy movement is (in basic terms) about people with disabilities speaking up for themselves. It means that although a person with a disability may call upon the support of others, the individual is entitled to be in control of their own resources and how they are directed. It is about having the right to make life decisions without undue influence or control by others.”

Self-advocacy as a civil rights movement for Autistic people had been pioneered [as it usually occurs] by a small group of vocal autistic bloggers; in 2006 this movement led to creation of Autistic Self Advocacy Network [ASAN], a nation-wide organization that defined itself as “run by and for Autistic people”. Their combined efforts have eventually led the Government to nuzzle the idea, and shortly afterwards [as the government funds were allocated] everybody was on a self-advocacy bandwagon, with Autism Speaks as usual leading the way.  We’ve seen since a proliferation of autism ventures researching, defining, designing, and delivering self-advocacy services to autistic populations from freshly diagnosed infants to autistic adults in most restrictive quarters.

The end effects of the self-advocacy delivery efforts on autistic population at large are statistically too small to account for [as usually happens with the effects of a placebo] – clearly it didn’t create an army of new self-advocates, not even a battalion; however it has created yet another niche for the tax money to be appropriated, this time not in the name of autistic cure and remediation, but in the name of promotion of their civil rights.

A quote from wiki on this subject may be enlightening at this point: “People with intellectual disabilities are often some of the most powerless members of society. They may live in large institutions or in smaller residences known as group homes which are staff-directed environments where residents have little or no control over their living conditions or with whom they share their living space. People with intellectual disabilities are extremely vulnerable to abuse due to their social and physical isolation.”  We shall add here that autistic people en masse have not only little or no control of their life, but sadly not a thing in the world, including their own thoughts can they hold safe.  By the time they become adults, they learn enough about people in charge of them to know that the only effective self-advocacy available to them is their complete and total obedience. Just as adults and children in the factories of our past [before the emergence of Unions] knew to be mum no matter what, and just as African slaves born into it before the Civil war.  The more oppressive the environment, the less are the chances of self-advocating by the powerless.

The two most oppressive constructs of autistic environment instrumented by our society which completely defy the attempts to self-advocacy by autistic individuals are  ‘Autistic Wandering’ and ‘Early Intervention’.  Ubiquitously neither of these two is mentioned by numerous Self-advocacy service providers, nor the Developmental Disability Councils, and not even by the Autistic Self-advocate organizations of any prominence.

‘Autistic Wandering’ and ‘eloping’ are taxonomic terms used to define attempts of autistic person to regain the freedom of movement and the right to explore.  The purpose and the effect of this taxonomy is at the same time to hide the fact that autistic people are denied the freedom of movement [available to their counterparts]  from an early age and often through their life, making them effectively a life-long captives, as well as to justify this fact.  The glaring reality that so called ‘Autistic wandering’ and ‘eloping’ are truly the desperate acts of self-advocacy [whether planned or spontaneous] is woefully ignored and not accepted!

Our society does not stand for an effective imprisonment of sub-populations based on their gender, race, religion, wealth, or even social status – and so to advocate that our society needs to keep autistic people in captive environments would not be an easy sell.  However once we introduce the taxonomy that classifies the attempts of autistic people to regain the basic freedom of movement afforded to everybody else, as ‘Autistic Wandering’ and ‘Eloping’, and by doing this effectively misrepresent their natural human tendencies as the defective autistic traits, then the pundits can discuss with impunity the merits of restriction, justifications of captivity, and ultimately convince the society of its necessity.

We wish to bring attention to  similar ‘vagrant’ taxonomy once employed by repressive regimes of the past century, that gave birth to ‘Vagrancy dragnets’ punishable by imprisonment [wiki – a vagrant is a person, often in poverty, who wanders from place to place without a home or regular employment or income].  By advancing the smokescreen of ‘Autistic Wandering’ our society have effectively reintroduced the imprisonment approach to solving a societal problem of our own creation.

This brings us to ‘Early Intervention’ and its egregious disregard of all and each self-advocacy attempts by those who are effectively subjected to it.  Just as ‘Autistic Wandering’ it is specifically an instrument of restriction [including restriction of movement and exploration], and a principled mechanism of containment which for autistic children subjected to it begins at infancy.  The other aspect of it is the segregation and removal from Society at large and restricting the individual from exposures to real life experiences afforded to other children, resulting in a lack of most basic and fundamental life-skills one needs to learn in order to navigate comfortably in our world on your own.  The attempts of these children to protest by their natural expressions of self-advocacy are ironically the very thing the Early Intervention is designed to extinguish.  The normalization prerogative adapted by the early intervention doctrine disqualifies expressions of self-advocacy by these children effectively in everything that matters to them!

The more oppressive the environment, the less are the chances of self-advocating by the powerless. Persons acquainted with the effects of slavery and a history of labor movement are generally cognizant of reasons the self-advocacy didn’t flourish then, and can see quite clearly that – We won’t empower self-advocacy unless we first address the prohibiting underlying causes! 


What is self-determination movement and how it is in danger of being hijacked by autism industry.

Self-determination programs have recently gained ground in different states.  While the idea of self-determination appears to be quite simple, the arrangements for achieving it are often quite involved. In some localities self-determination seems to have been hijacked by the autism industry.

Here is a definition of what self-determination is by AutismNow.org:  “Self-determination means that all people have the right to direct their futures; have control over how they live their lives, where, and with whom; and have authority over the resources that support them.”  They continue by defining a commendable “Four Principles of Self-Determination” and follow their introduction by a brief of “What does it really mean“, which cites a groundwork for a National program on ‘Self-Determination for Persons with Developmental Disabilities’.  We recommend reading both, as it demonstrates how great principles get reworked to gratify and expand the autism industry while at the same time ensuring that none of principled provisions would ever be able to occur.

Lastly we refer you to notes by our researcher of Self-determination program in California, which looks at how the program is actually implemented, further confirming our opinion that Self-determination is becoming another sham.

It seems like some self-advocates are aware of the happenings; ASAN for example has recently released a guide for ‘supported decision making’ that guides the individual through the process of self-determination, advocating also for a supported decision of individual inclusive to the cases under guardianship, but their effects while helpful to an individual do not challenge the emerged controlling infrastructure.


What can be done – Autistic Governance

ASAN recently wrote a letter to Arizona’s Medicaid agency urging it not to classify segregated “farmsteads” as community-based settings, noting that unlike traditional farms, autism-specific farmsteads are segregated, disability-specific settings where people work for less than minimum wage, and where people have few or no opportunities to work side by side with people who do not have disabilities.  Our research indicates that not only these facts are true, but there are multiple cases of farmsteads implementing a prison like environments with persistent intrusive surveillance and other measures restricting individual’s freedom of movement both outside and inside the housing facility.

We are advocating to initiate an organizing movement leading to a creation of Autistic Governance in Autistic Housing of all kinds, including in Farmsteads, and closed communities.  The Autistic Governance can be achieved through creation of  Self-Governing Autistic Organizations at the above referenced housing facilities and institutions.  This is the next logical step in self advocacy that needs to become organized to empower autistic people to retake control of their lives, starting where they live.  

The definition of the democratic structures of Autistic Self Governance and its body of Members  is a first part of this project.  This may follow the way Unions unite their members, at localities and centrally. Secure communication mechanisms including safe and unrestricted grievance and reporting channels by the members would need to be designed and implemented to provide the organization leadership with the information needed to make right decisions. Legal, civic, and social approaches need to be developed and maintained to allow the organization to act appropriately and effectively on behalf of the local units and the individual members when necessary. This is we believe a way to an Empowered Self-advocacy.   We need Volunteers with knowledge of these structures to design an effective Governing system, inclusive of people in all kinds of housing [who would be helped by supported decision making when needed]. 


See Project 2019 for the latest on Self-Direction, Supported Decision Making and Autistic Governance.