I attended a legislative hearing today at the State House on aversives and the bills around it. I began by saying that I was a person with an autism diagnosis, that I had an elder and only sibling who is also autistic and that I’d worked with people with severe behaviors. I said that for people with different/sensitive neurologies coupled with sensory sensitivities that shock treatment and ammonia sprays in the face were torture. I wish I’d mentioned that PTSD was an inevitable result. I also wish I’d said that 25% of autism spectrum people are also epileptic and you sure don’t want to pass any level of electrical current across already sensitive wiring. I went on to say that the State committee exploring/deciding on this issue needed to have autistic persons on it.
And then I had to leave, it was all I could do to stay in that room that long – sensory issues and hearing people casually discuss/dehumanize their children. One Rep dragged in his nephew who’s a student at JRC. It was exploitative, like a freak show. The following material is testimony I intended to give, but did not.
I am here representing the Autistic Self Advocacy Network, New England Chapter. I have a diagnosis of Autism. It is a social disability that comes with significant sensory sensitivities. The types of aversives utilized at the Judge Rotenburg Center are torturous for autistic people. They will result in PTSD and severe trust issues. Persons with overly sensitive senses will, by definition, be affected worse than the non-autistic population.
We are a vulnerable population that needs our rights as human beings to be taken seriously. Animals and criminals have more protections than those of us in the Judge Rotenberg Center.
42 USC 15009 SEC. 109. RIGHTS OF INDIVIDUALS WITH DEVELOPMENTAL DISABILITIES.
(a) IN GENERAL. -Congress makes the following findings respecting the rights of individuals with developmental disabilities:
(1) Individuals with developmental disabilities have a right to appropriate treatment, services, and habilitation for such disabilities, consistent with section 101(c).
(2) The treatment, services, and habitation for an individual with developmental disabilities should be designed to maximize the potential of the individual and should be provided in the setting that is least restrictive of the individual’s personal liberty.
(3) The Federal Government and the States both have an obligation to ensure that public funds are provided only to institutional programs, residential programs, and other community programs, including educational programs in which individuals with developmental disabilities participate, that-
(A) provide treatment, services, and habilitation that are appropriate to the needs of such individuals; and
(B) meet minimum standards relating to-
(i) provision of care that is free of abuse, neglect, sexual and financial exploitation, and violations of legal and human rights and that subjects individuals with developmental disabilities to no greater risk of harm than others in the general population;
(iii) prohibition of the use of physical restraint and seclusion for such an individual unless absolutely necessary to ensure the immediate physical safety of the individual or others, and prohibition of the use of such restraint and seclusion as a punishment or as a substitute for a habilitation program;
(iv) prohibition of the excessive use of chemical restraints on such individuals and the use of such restraints as punishment or as a substitute for a habilitation program or in quantities that interfere with services, treatment, or habilitation for such individuals.
In addition, on July 30 2009, the United States ratified the Convention on Rights and Dignity of the Disabled:
Guiding Principles of the Convention
There are eight guiding principles that underlie the Convention and
each one of its specific articles:
1. Respect for inherent dignity, individual autonomy including the
freedom to make one’s own choices, and independence of persons
3. Full and effective participation and inclusion in society
4. Respect for difference and acceptance of persons with
disabilities as part of human diversity and humanity
5. Equality of opportunity
7. Equality between men and women
8. Respect for the evolving capacities of children with
disabilities and respect for the right of children with disabilities
to preserve their identities
Also, the Primary Four core values of human rights law are of particular importance in the context of disability:
• the dignity of each individual, who is deemed to be of inestimable value because of his/her inherent self-worth, and not because s/he is economically or otherwise “useful”;
• the concept of autonomy or self-determination, which is based on the presumption of a capacity for self-directed action and behaviour, and requires that the person be placed at the centre of all decisions affecting him/her;
• the inherent equality of all regardless of difference;
• and the ethic of solidarity, which requires society to sustain the freedom of the person with appropriate social supports.
With the proper supports, we autistics can have a bright future. The Judge Rotenburg Center utilizes techniques that are by definition not supportive. Please ban aversives in their totality so that all autistics may have a future.