Message From the Board: Allies and Adversity
This month’s newsletter deals with a few tough and controversial issues facing the Autistic community and our allies. Those words are important to remember: “community” and “allies.” While Autistic people bear the brunt of society’s harmful misunderstandings of and negative attitudes toward Autism, we are–like all people–members of various communities. We are supported by networks of family and friends, and we fulfill various social roles throughout our lives. Like all members of our communities, we are affected by the national, state, and local policies, and cultural practices, that shape everyone’s daily lives. The impact of policies and social attitudes that directly affect us as Autistic people also reverberates through our family ties and social support networks.
Right now, Autistic people face difficult and ugly realities. Often people assume that Autistic people don’t have the right to participate in certain sectors of society. But in reality we are parents, siblings, companions, collaborators, and co-workers. Our Autistic identity is important to us because it shapes the way we interact with the world and the way society interacts with us. We are similarly shaped by so many other experiences. We come from a multitude of backgrounds; we are women, we are people of color, we have concurrent disabilities, and we are members of LGBT communities.
It is important for us and especially for our neurotypical allies to remember this idea of intersecting and interconnected identities, and to be mindful of the variety of familial and social roles that Autistic people perform. Autism is one thread in a vast and complex cultural tapestry, and we are all in this together.
Legalized Abuse: The Need for Reform of Restraint and Seclusion
In 2009, the federal Government Accountability Office published a report entitled Seclusions and Restraints: Selected Cases of Death and Abuse at Public and Private Schools and Treatment Centers. In the wake of the GAO report, several leading disability rights organizations have demanded an end to the abusive yet shockingly pervasive practices of restraint and seclusion. For the last four years, advocates have attempted to pass federal law that would limit the use of restraints and seclusion at the national level. However, in the absence of visible, coordinated public support, these laws have failed to take hold. Congress is indefinitely stalled on addressing proposed legislation to limit seclusion and restraint, and in September the US Department of Education upheld the use of seclusion in special education classrooms.
“Restraint and seclusion” refer to drastic short-term methods intended to immediately address violent or dangerous behavior. There are three types of restraints: 1) physical (such as holding someone’s arms or pinning someone to the ground), 2) mechanical (such as tying someone to a chair or table with straps or belts), and 3) chemical (such as giving someone psychiatric medications). All types of restraint can constitute a form of abuse in which the victim of restraint is subjected to invasive limitations on physical freedom and movement. Restraint is frequently coupled with seclusion, which is the practice of leaving a person alone inside a room from which he or she cannot escape, though seclusion can also occur by itself. These techniques are usually allowed for the stated purpose of containing or controlling people who present violent or aggressive behavior, but in the absence of strong regulations, they are frequently used to punish or control behavior that is not actually dangerous, but merely disruptive, inconvenient, or unusual. Indeed, even in genuine instances of extreme aggression or similarly dangerous behavior, short-term punitive measures like restraint and seclusion may be used entirely in lieu of more involved and nuanced long-term practices that seek to determine the causes of dangerous behavior, and to re-direct or calm aggression.
Furthermore, these practices have potentially dangerous consequences for those who are subjected to them. As one might expect, many people who are subjected to restraint and seclusion experience acute post-traumatic stress or post-traumatic stress disorder from the experience, and/or may develop depression, anxiety, self-hatred, or other forms of profound emotional distress. Some people subjected to restraint and seclusion have been severely physically injured or even killed as a direct result of these practices; a large number of deaths in special education and institutional settings are attributable to the use of restraint and seclusion. A disproportionate number of people subjected to restraint and seclusion are disabled and/or people of color, suggesting a deeply embedded ableist framework that intersects with institutionalized racism. As disabled people and people of color are at particular risk for abusive restraint and seclusion, it is imperative that states pass legally enforceable regulations to limit or abolish these practices in order to prevent further abuse, injury, and death of individuals who are already members of marginalized and vulnerable communities.
Currently, only about half of all states have any kind of regulations that limit or restrict the use of restraints and seclusion, and only a smaller number within that have binding laws governing their use. Most states have, at best, loose, unenforceable guidelines. As a result, students and people in institutions across the country are at risk of restraint and seclusion implemented by personnel who are not trained in the use of non-invasive crisis intervention and de-escalation techniques, and who resort to restraint and seclusion as the convenient method of controlling situations that could be handled with alternative means. Contrary to claims that restraint and seclusion can be therapeutic or effective means of behavioral modification, these practices affirm or escalate, rather than discourage, violent behavior, and perpetuate an environment of fear instead of one of learning and growth.
While it is possible to justify the use of physical restraint in cases of immediate and imminent danger of harm to self or others, this type of restraint should never be permitted unsupervised or without proper training to prevent injury or death caused by asphyxiation or other complications. And of course educators and staff in school and institutional settings must have access to professional development and education that emphasize respectful, non-invasive de-escalation techniques and crisis intervention for potentially dangerous situations. Unfortunately, in many cases, teachers and staff do not have access to any training specific to the use of restraint and seclusion, de-escalation techniques, crisis intervention, or positive behavioral supports, and a significant number of states do not have law that require this type of training. Staff using restraint and seclusion frequently have no training in mental health treatment or social work.
In the absence of strong regulations either at the national level or consistently across states to abolish punitive and coercive restraint and seclusion, and to mandate training on positive and non-invasive crisis intervention and behavior support, disabled youth are at extreme risk for abuse. In most schools and institutions, there are no effective, consistent reporting systems for informing students or their families of the reasons for restraint and seclusion, and there is a glaring lack of accountability and transparency for students or families to ask how, why, and how frequently students are restrained or secluded. Without a clear, reliable reporting system in place, there is no way to enforce existing or future regulations against abusive restraint and seclusion, and the cycle of abuse can continue unchecked.
Ableism Hurts Everybody
No doubt most of our members and supporters are familiar with the idea of ableism, but the definition bears repeating. Ableism describes deep-seated, pervasive prejudice against disabled people. Ableism, like other “-isms,” is a form of “institutionalized” oppression, which means that it is so deeply embedded in our culture that it has become foundational to the way our laws, policies, practices, and beliefs operate. It is everywhere, and is often unconscious; it may take forms that are regarded as “common sense.” Because of ableism, disabled people face many forms of oppression and adversity in our daily lives that could be avoided if social attitudes changed, and if laws and policies reflected that change. (And vice versa.)
As remarked in this month’s Message From the Board, disabled people–like all people–operate within familial, social, and community networks. We often receive very close and involved support from family members, guardians, educators, and/or professional caregivers. Ableism–the deep-seated form of oppression that devalues our education, work, social contributions, and our very lives–also affects those who are close to us, even if they are not disabled themselves.
The stated mission and message of ASAN, and of other self-advocacy groups within the larger disabled community, sometimes appears to be directly at odds with the rhetoric and goals of organizations that purport to represent the interests and perspectives of non-disabled parents, guardians, and caregivers. Occasionally we really are at odds with them; we do not, for example, advocate for our own eradication, nor do we support scientifically unfounded beliefs about the “causes” of autism.
However, most of the apparent conflict derives from different perspectives and approaches, not from fundamentally different goals. Organizations and campaigns that fail to center the voices and experiences of actual Autistic people not only perpetuate ableism, but they often fail to account for it entirely, and as a result their supporters and participants fail to see how their own struggles actually result from the same oppression that Autistic people face directly every day.
Normally, ASAN would not wish to draw further attention to extremely negative and sensationalistic portrayals of autism. However, the reality is that a few of the concerns clumsily expressed by Age of Autism’s Kim Stagliano on the Huffington Post blog, in a nasty post published earlier this month titled “Autism Sucks and Then We Die,” are shared by many parents, guardians, and caregivers–Autistic and neurotypical alike. (If you choose to find and read the post, be warned that it contains very overt ableism and a hateful portrayal of autism.)
Age of Autism is an organization that disseminates flagrant misinformation and, like the larger and more infamous Autism Speaks, dedicates energy and funding to the project of “curing” autism. As a representative of the organization, Stagliano reflects these attributes. But at the heart of her post is a frustration with the severe lack of supports and resources for Autistic people and those who are closest to us.
It’s true: As children, those of us on the spectrum face a severe lack of affordable, accessible interventions and supports. Our right to an education is disrupted by a lack of funding, resources, training, and oversight. In our homes, schools, and communities, we are misunderstood, isolated, and constantly frustrated because of differences–sometimes very profound differences–in communication, interests, and behavior. The adversity increases tremendously as we go through adolescence and face adulthood. Respite care, resources, and community support for non-Autistic parents, and for all Autistic adults whether we are parents or not, is essentially non-existant. Non-Autistic and Autistic parents alike are left alienated, exhausted, and financially drained. Autistic adults are abandoned by a society that does not see fit to address us and invest in us as adults; we are often left to rely on our families and guardians, without opportunities to form and access support networks in the larger community. If we are “high-functioning” enough, if we can manage to eke out a place in a public sphere designed by and for neurotypical people, our differences might be tolerated or forgiven. If we aren’t, and we can’t, we get silenced, infantilized, dehumanized, and people write nasty blog posts and editorials about how they see us broken and burdensome.
People who are not disabled miss the bigger picture of how ableism, as a deeply entrenched cultural force, creates the obstacles faced by disabled people and by our allies and supporters. Our culture pathologizes and stigmatizes behavioral and communicative difference. Our society and its economic sensibilities perceive disabled people as a poor investment; we aren’t considered worthy of the funding and resources that are required to create and distribute the supports that we need to thrive. Far more time and money is spent trying to eradicate autism than is spent on developing supports for Autistic people. Because disabled people’s lives are devalued, the work of parents (especially mothers) and of caregivers in general (especially women) is also devalued. The picture encompasses much more than ableism alone: There is a dearth of community-based support in part because American culture is so fixated on individualism and a “boot straps” mentality. Therapies and interventions remain financially out of reach because health care is considered a privilege, not a fundamental right.
This bigger picture is bleak and daunting, but the flip-side of being aware of the larger cultural context is a powerful sense of solidarity. Change happens when people find and form communities; when we listen to, learn from. and support each other; and when we realize that we all have a stake in the cause of acceptance and diversity.
The Olmstead Decision is Safe For Now
For months, Gov. Christine Gregoire of the state of Washington has been struggling with a decision as to whether to pursue a lawsuit brought against the state, M.R. vs. Dreyfus, to the Supreme Court. This course of action held the risk of threatening basic civil rights for Americans with disabilities on a national level. The disability advocacy community has been calling upon Gov. Gregoire to refrain from taking this case to the Supreme Court, and the Washington state chapter of the Autistic Self Advocacy Network has been among those leading the charge.
On Monday, Gov. Gregoire relented, and announced that she will not pursue this case at the Supreme Court level, instead embarking on a course of action that will refer the case back to the district court for resolution, as the ruling of the Ninth Circuit Court of Appeals dictated. This marks a substantial victory for the disability advocacy community, removing the imminent threat to nationwide civil rights for the disability community that a Supreme Court appeal would have entailed.
The history of this case has been long and complex. In January of 2011, the state of Washington enacted budget cuts that included a 10% reduction to Medicaid services, including funds allocated to providing in-home personal assisted care for individuals with disabilities. This created a risk that some Medicaid recipients who depended on these services to sustain their ability to live in community-based housing would now be in danger of forced institutionalization, due to lack of necessary support.
A group of 14 affected individuals, 2 advocacy organizations, and a union for home-care workers brought suit against the state for violating their civil right to live in the most integrated setting in their communities, as guaranteed by the Americans with Disabilities Act and by the Olmstead decision, a 1999 landmark Supreme Court ruling that affirmed this right to community integration for those with disabilities. This group of plaintiffs sought a preliminary injunction barring the state of Washington from implementing these budget cuts while the case was in litigation. When the district court denied the motion for a preliminary injunction, the plaintiffs appealed to the Ninth Circuit court.
The appeals court, however, issued a strong judgment which found in favor of the plaintiffs, reversing the denial of the preliminary injunction, and remanding the case back down to the district court for further proceedings. This prompted the Governor’s office to consider appealing this judgment to the Supreme Court, in an effort to challenge this restriction on their ability to control the state’s budget. Gravely concerned that such a Supreme Court challenge carried a substantial risk of undercutting the historic Olmstead decision and weakening the ADA, the disability community has been fervent in calling upon the Governor not to appeal this case.
The Autistic Self Advocacy Network, at both the national and state chapter levels, has been engaged in ongoing efforts to sway the Governor’s decision, in coordination with other disability advocacy organizations, notably including ADAPT and the Alliance of People with disAbilities. ASAN’s efforts have included a press conference, an op-ed in the Seattle Times by Ari Ne’eman, president of ASAN, and a petition on change.org calling upon the Governor not to appeal, which amassed over 800 signatures.
Under this mounting pressure, Governor Gregoire cast about for options. She sought a statement from the Department of Justice and the Department of Health and Human Services, that would clarify that the state’s programs and the manner in which they were implemented were consistent with the ADA and with Olmstead. On the morning of October 22nd, the final deadline for appeal, these agencies provided the Governor’s office with a carefully worded statement supporting Washington state’s programs, subject to strict conditions.
Satisfied with this statement, the Governor’s office announced that afternoon, mere hours before the deadline, that they would not appeal to the Supreme Court, accepting the judgment of the Ninth Circuit, in hopes that this testimony from two federal agencies will strengthen the state’s case when proceedings resume at the district court level. That the Governor ulitimately bowed to the pressure of the disability community, and allowed the Ninth Circuit ruling to stand, is a testament to the efforts of ASAN, ADAPT, the Alliance for People with disAbilities, and numerous other advocacy organizations that joined together in this effort to prevent the Olmstead decision from being challenged at the Supreme Court level.
The case proceedings will continue in the district court, but the Olmstead decision is secure from a Supreme Court review, for the time being, and all the disability advocates who have participated in this effort to intervene in a matter of critical importance to our civil rights may take heart in knowing that our efforts were not in vain, and that together, we not only can make a difference, we have made a difference. ASAN extends sincere thanks to all of its members, volunteers, allies and partner organizations who have joined in this effort, and congratulates them on this important victory.
News and Advocacy Updates
ASAN Continues to Address Organ Transplant Policy
Last month, we reported that representatives from several disability self-advocacy organizations, including ASAN, met with senior staff of the Department of Health and Human Services to discuss national organ transplant policies. ASAN is continuing to meet and work with leaders from the National Council on Independent Living and Not Dead Yet to push national policies and guidelines that protect the rights of everyone in the disabled community. The effort is necessarily collaborative, as policies addressing both the procurement and allocation of organs and tissues have profound effects on the lives of disabled people. ASAN and our allies recognize the need to address all aspects of the organ procurement and allocation process.
ASAN to Protest Autism Speaks in DC
On Saturday, November 3 (unfortunately there was a little confusion over the correct date; this year the walk and protest will be on the 3rd) the DC Metropolitan Area Chapter of the Autistic Self Advocacy Network will be leading a protest of Autism Speaks’ “Walk for Autism.” The protest is meant to draw attention to Autism Speaks’ hypocrisy, and its sensationalistic and exploitive fundraising tactics. Complete information about the protest can be found on the event’s Facebook page. If you are in the area and would like to join us, we look forward to seeing you there.
ASAN Sacramento Chapter Leader Honored at the Supported Life Institute’s Inclusion Celebration
Earlier this month, ASAN Sacramento Chapter Leader Andy Voss was honored at the Supported Life Institute’s Inclusion Celebration for his work on self-advocacy, inclusion, and neurodiversity. Be sure to watch the video of Andy receiving his award. Congratulations!
National Forum on Disability Issues Was a Success
ASAN was one of the co-sponsors of the National Forum on Disability Issues, which was held earlier this month. The Forum was a non-partisan event that drew on the support of over 80 advocacy organizations and thousands of supporters to engage in discussion of election issues that directly affect the lives of disabled voters and citizens. Video coverage of the event, including complete transcripts, is available through the Forum website.
ADAPT Activists Took Over Harrisburg Capitol Rotunda to Demand Medicaid Discussion
From Sunday, October 14 to Wednesday, October 17, about 300 activists from the disability rights organization ADAPT occupied the rotunda of the Pennsylvania State Capitol in Harrisburg, as well as the offices of Governor Corbett, SenateAppropriations Chair Jake Corman, and House Appropriations Chair William Adolph. Their purpose was to demand a discussion of ways to re-build funding for disability-related services. Local ASAN members also participated in the rallies. For more information about ADAPT and their direct, non-violent grassroots activism, visit the organization’s webpage.
Justice Department Taking Measures to Protect Voting Rights
With the federal election coming up, the United States Justice Department has issued a press release to inform voters of the efforts the Department is undertaking to protect everyone’s right to cast their vote. ASAN strongly encourages our members and supporters to read the release, and to be aware of their rights.
ASAN’s Annual Gala is Coming Up!
Our annual gala will be held on November 14th. We hope to see you there!