Educational and strategic forum of US grassroots disability groups
Washington DC, June 12


About 100 in the room. Familiar People Who faces: Ron Bassman, Judi Chamberlin, Tina Minkowitz, David Oaks. Curt Decker. Bill Goold from Senator Harkins office.

Holly Burkhalter: many of the worst abuses of people with disabilities have an odor (she may have said aura) of medical sanctity; there is involuntary and arbitrary detention.

Kathy Martinez, WID/NCD, Convention will create a world recognized standard. Kathleen Blank: Behind every human right is a civil right.

Eric Rosenthal, MDRI, the strength is in consensus (coalition building), develop a basis in action (convention enables international law/language)

Panel: Why disability rights advocates in the US should care about international human rights: Andy Imparato, AAPD (former NCD staff). Meadours, Self Advocates Becoming Empowered - important that people with cognitive disabilities also think about international issues. LaDonna Fowler - Native Americans are already international - US/Canada/Mexico. Wade Henderson - outrageous that all UN meetings aren’t accessible hence appropriate to start a national US coalition for a UN pwd rights Convention.

Tina Minkowitz, working with WNUSP on Mexico materials that Karl Bach Jensen presented there, if Convention doesn’t deal with consumer and survivor issues, it can be very harmful to People Who. Psychiatric commitment is a human rights abuse; involuntary, forced interventions in the name of treatment are rights abuse, drugs are a chemical straightjacket, forced ect, are torture. Interventions are not a form of treatment, but rather of control. Involuntary institutionalization is not treatment; People Who won’t be on board if this is part of the Convention. Current language is about "due process" for commitment; that’s not acceptable. Cross-disability solidarity.

Sara Triano, self-identified Person Who, former leader of National Disabled Students Movement, quoting a leader from coalition of Resistance Organizations: it’s who or what we leave out that ultimately determines the success of what we do. There aren’t youth in the room today.

Marilyn Golden, DREDF, offers technical assistance to other countries in developing disability rights laws, esp Israel and in Europe. Diane Coleman, Not Dead Yet, doctors can overrule advance directives (they rely on "futile care" guidelines) to withhold treatment (and impose it. S.), massive amount of *non*-investigation of elder killing by physicians. (I wonder where right-to-die fits here. S.)

Christa Camacho, SSA, international exchange, mobility and experience

Peter Thomas, health advocate, Center for International Rehabilitation, urging International Disability Watch/Rights Index, annual report - data collection, data analysis (surveys, central database, global collection, international disability alliance (IDA))

Panel of other groups who have done successful international work: Janet Lord, Landmine Survivors Network. Zuhy Sayeed, Canadian Association for Community Living, families must be partners, children must be integrated into the Convention, how to also insure systems change not just human rights. Cliff Curtis, World Wildlife Fund, social justice common denominator, can speak from our hearts from a position of truth, (POPS - persistent organic pollutants). David Worth, environmental activist, know relationship between U S agencies and U S State department.

John Kemp, NCD, strategy session. Much input over the meanings of each word and idea:

Vision: recognition and actualization of disability rights as human rights; pwd have *all* human rights; disability rights are a subset of human rights. What is the definition of disability? ADA US based. Economic and social context. A violation of disability rights is a violation of human rights. Pwd are part of the human race and entitled to all rights and privileges. Every civil right has a correlative human right. It’s all about access, access to a human right.

2 key strategies: 1) create understanding and buy in to the concept of disability rights as human rights; 2) codify the concept of disability rights as human rights as an international convention that lends official power to it.

Activities: real data, real examples, involve: disability rights community, general population, public policy leaders, media

Lindstrom: twin track approach: better compliance with existing plus Convention

Attenders had trouble not making speeches, kept addressing the issues of sub-populations that they were representing.

Human rights for the disabled will be useful for people without disabilities, just as curb cuts were useful to many more than those who use wheelchairs (luggage, UPS). Analogy to universal design.

Role of caregivers.

Epilepsy not covered by ADA.

David: generalize Privileges to rights to apply to all pwd, internationally, revoke Principles for the Protection of Persons with Mental Illness (1991).

Justin Dart concluded: A weak Convention is worse than having no Convention at all.

U S Coalition meeting

sign at agreement in principle for Convention to go forward

Wednesday morning: Campaign-building meeting

More discussion of vision, perhaps include a preamble. Wordsmithing language, refining concepts. Material will be incorporated and recirculated. Lots of leaders in the room with lots of ideas about how to organize and with their own issues. Not consensus about how to go forward, roadblocks within the community.  Is everyone even on board?

The grass roots is very weedy.

Participant noted that her son was accused of autism; I am thinking about how the phrase accused of mental illness could be used, accused of ADD; accused of ODD (oppositional defiant disorder).