National Council on Independent Living

Renaissance Hotel, Washington DC, June 12 - 16

California faces: Cindy Jones and husband Bill; Marilyn Golden, DREDF; an attorney from DRA; Judy Heumann (now disability advisor for the World Bank, Sushil from CFILC, Erica Jones, PDBTAC; Mary Rios, Downey ILC; Pat Yeager, CFILC; Albert Cheong, and many many more.

People Who: Judi Chamberlin, David Oaks, Ron Bassman, Tina Minkowitz, Don Roberts (AK SILC), Tom Olin, J Rock Johnson, ...

Others I recognized: Curt Decker, NAPAS

It poured at noon time, just when the planned rally at the Capitol was planned and an additional rally at the Supreme Court to protest the 9:0 pro-employer decision about employee work environment choice. Despite the weather, about 300 lined up outside the Capitol and rallied/marched, then visited electeds.

About 30 were at the multi-cultural committee meeting which was mostly process, a chair to be nominated/elected, ideas for a summit, how to get more people of color involved. 50 % of NCIL’s staff of 8 are people from different cultures. "We need to know about each other." "Hire us and it will happen."

Region IX update

CA, NV, HI, AZ ~20 people

rumor that an ADAPT action is being planned, a lobby meeting at 10:15; people are being encouraged to respect the presenters, attend the workshops we signed up for

From yesterday’s Hill visits, Maxine Waters has agreed to support MiCASSA. Visits *do* make a difference. Attach face to email name. Since September, Hill visits have dwindled. 63 NCIL packets were delivered, to all CA legislators who have an ILC in their district. Show up: "flash chrome." NCIL legislative packets are useful. NCIL Hill prepping keeps improving: rally, packets, ... Voice of the Retarded (VOR) has been active on the Hill against MiCASSA and the budget analyst’s high cost report make passage unlikely.

Bridging the Digital Divide

Tech tip: put full URL of .pdf file into Google search. On "found" page, select view as .html or .txt. If translation from .pdf available, it will display and then can be copied, edited, ...

Bush administration not talking about the digital divide. 54% of Americans are now online, somewhere. 9/01: 26% of pwd are online. What is the CIL role in closing this gap? CIL’s are already playing a significant role.

Metropolitan: Computer recycling businesses, especially now that older computers (Pentium II), in MA at least, must be disposed of in a way that is environmentally sound. "Part B" dollars used for computer accessibility. How ensure affordable fast access (now at least $40)? Web hosting service business: Metro West CIL also runs computer training classes, with adaptive equipment when requested. Van for picking up donations and delivering (use own cars or rent), sufficiently qualified staff (outsourced, encourage staff certification), ongoing tech support. Monitors that don’t work are trash, aren’t accepted as donations. Next: door to door mobile computer repair service; house call with equipped vehicle. Skills training contract with OR. Training in web design.

Rural: needed to start with literacy. Transportation. Assistive technology. People have a lot of time and a lot of curiosity. Let people make mistakes, let toaster-repair folks fool around, learn how to repair by trail and error. Then offer training.

An ILC is about building community. Each staff person is a volunteer coordinator. Volunteers must be used to supplement staff; there’s just too much to do.

The two presenting centers host Justice for All, DimeNet, Mouth, Not Dead Yet - serve the disability community

NCIL 2002 Advocacy Priorities:

Civil rights/ADA notification act (formal notice of violation 90 days before initiating legislation)


MiCASSA and Rehab Act


Plenaries, breakouts, tone, very oriented to social change, political

In 2000, CIL’s got 1500 people out of nursing homes and institutions and kept 19,000 people out of nursing homes.

NCIL Business Meeting

L o n g! (2 PM - 7 PM)

Kelly Buckland elected to VP; Lou Ann Kibby to Secretary; Robert Shuckahosse (pronounced sha kah’ zee) to Chair, Multi-Cultural (self-disclosed as "I’m bipolar" and ADD and real interest in Indian country issues.)

As of 5/15, 650 people registered for conference; maybe 300 at the business meeting. NCIL membership: 270 CILs; 18 SILCs; 289 individuals; 39 organizations.

Member-at-large nominations (words in parens are the nominees descriptors) : Michael Blatchford (American Indian), Becka Vaughn (not present, DRHC national coordinator (housing)), Zainab (Z) Jama (youth), Doug Town (national public relations; FL), Brian McDonald (WID), Jackie Williams (Black), Julia Sain (Charlotte), Juanita Benson (PA, volunteer for the handicapped), Linda Anthony (not present), John Blevins (deaf perspective), Corey Rowle, Mark Derry (incumbent). Six votes:

Staff created ballots on the fly that included all the floor nominations as well as those previously submitted.

Winners: Voting close: Two year terms: Z, Brian McDonald, Mark Derry; One year terms: Anthony, Blevins, Rowle.

MD Congressman Steny Hoyer: member, Appropriations Committee, let’s talk about not disability but ability. Lets stop "dis" - ing people.

Reports from 10 regions. Resistance to MiCASSA and some support. No new burden on states, on CMS. Legislators wondered why VOR was so opposed and asked why NCIL and VOR were not working together? Everyone was informed about what was happening in each state.

Fair RSA enforcement of regs applying to SILCs and CILs and state planning is moving along. Commissioner Wilson has made himself available. DOE: Commissioner has authority to withhold funding until plan is approved, joint responsibility, joint sign-off, between OR and state SILC. (W/o unacceptable PA plan. Next, Indiana)

Resolutions: 1) re accommodating MCS/EI, ... - submitted by Susan Molloy - resolution adopted, a couple of "no’s". Next three resolutions were not recommended by the board. 2) how to get disaster relief funds released fast enough to support pwd. Negative recommendation is that the concept is good but the resolution is poorly crafted, is misdirected. (I didn’t stay for the discussion of the rest of the resolutions because I went to ...)

Add-on meeting organized by David Oaks, guests of NCIL, paid for by SCI: His goal to get cross-disability support to defeat the appointment of Sally Satel to the CMHS National Advisory Council.

~30, mostly non c/s - I recognize Marilyn Golden, Mary Rios, Susan Malloy, J Rock Johnson, Tina Minkowitz, Marc Ross Miller, Andy Imparato, Don Roberts, Martin Hirschfield, Bob Kafka, Laura Van Tosh, J Rock, Emily Hoffman, Claudia Center, ...

Sally Zinman, David Oaks, Ron Bassman, Judi Chamberlin at the head table

Justin and Yoshiko: No forced treatment ever. (He interspersed that affirmation four more times throughout the rest of his remarks.) Satel mocks the very idea of consumer/survivors speaking for ourselves. Let’s lead a revolution of empowerment. We have a right to quality healthcare of our own choosing.

Ron Bassman: remembering Rae, read her classic "To be a mental patient," briefly told the history of the NCD report and commended its recommendations especially the first, to work towards a totally voluntary mental health system.

Judi Chamberlin: we are the weakest in the disability movement, the first for the administration to target, to wit, the Bush appointments, the anti-ADA rulings, ... Our rights are all under attack.

Sally Zinman: forced treatment is a system failure; forced treatment is propelled by the myth of the violent mental patient

David Oaks: we are being attacked because we are getting clout; SCI is doing cross-oppression organizing. Satel is the easiest thing to organize around. She’s a backlash against movements, backed by American Enterprise Institute. 5 Technical Assistance Centers de-funding. Mental Health Commission press releases didn’t announce that Dan Fisher was a survivor.

Jim Ward, ADA Watch, a war against the traditions of justice

Larry Plumlee: your group may be diagnosed next

Andy Imparato, AAPD, many electeds have connections to mental illness but don’t talk to us. We need to get the politicians to understand they must talk to us.

Rights Under Siege Network

Major Protest, legal plus non-violent civil disobedience

Hunger Strike

Marc Ross Miller: proactive not reactive

Marci Roth: what about the parents of young children

Judi: NAMI is hand in glove with the psychiatrists and the drug companies to keep their kids lifetime mental patients. There are other kinds of parents, many examples in physical disability world of families who want their kids integrated, educated, independent

Ron Bassman: shrink testified that no one diagnosed with schizophrenia can be a parent

Guest: How come an exhibitor can have this meeting; what’s the emergency? Am I or am I not at a NCIL meeting, ...

Laura Van Tosh: MD rally

Strategy: ... discussion, Kafka: who/what/specifically; Coleman, Not Dead Yet, also unhappy with APA

NOW, fall, women with disabilities conference, natural partnership



~40 How to build a movement

Denise Nepveux, disability studies doctoral student, U Illinois Chicago. Models: rational choice; framing theory - the way you define the problem determines which activities you take, which strategies; identity politics; coalition building around groups that identify differently, who don’t even identify as having a disability leads to suspicion and distrust in cross-disability groups. People don’t have information that identifying as a pwd can have benefit, be a positive thing; people see "disabled" as having no hope, no productive life. Becoming "non-disabled" is the goal, gives hope. Method then is to get to the very grass roots and explain what disability really means.

Susan Molloy - gulag of disabled people, traveling from place to place to find where they can breathe the air, SW US deserts and coasts are havens. Pilgrimage. Initially, those diagnosed were women, and the tendency was to wilt. Learnings from AIDS/the gay community. Strong identification with psychiatric survivors movement in particular because of very bad reactions to psych meds, more apt to get tardive symptoms, ... Nine psychiatric diagnoses so far. CA has in building code, minimal access standards, signage that looks like a big pinwheel.

HHS update - handout/slides covered what has already been reported on iris list. I took handout and didn’t stay

Olmstead updates - ballroom overflowing; discussion of cases since, directions Olmstead rights are going

Serving People with Psychiatric Disabilities

very full room, maybe 75, more chairs brought in

Ron Bassman (dx with sz, ect, insulin, PhD psychologist, peer advocate and educator), Judi Chamberlin (works for NEC, Bush administration has targeted to defund, founding board member of AAPD), Darby Penney (NARPA board, former NY recipient affairs director)

Read Rae’s "To Be a Mental Patient" 1984 piece

Only two in the room raised their hands when asked if they thought mental illness was a brain disease.

Darby: theories of mental illness: medical - biological diseases of the brain, chronic, incurable remission not recovery (yes, this is a theory, like the others that follow; there is no proof); disability model - a condition, no blame, compensate with accommodations; trauma model - sexual or other childhood abuse, catharsis is part of recovery; social/economic/political models - poverty, intolerable living conditions; spiritual model - imbalance, transformation, extreme but not necessarily unpleasant states; recovery - self-help, self-determination, choice, empowerment

Judi: people are maintained by the mental health system in a self-contained mental health world, not guiding them to ILC’s.

 Lots of audience ILC staff how-to questions. 

Board meeting

Marriott contract ends 2003, not renewable (hotel booked alread).  Options: change hotel, change city (and therefore Hill advocacy conference orientation), change dates

MiCASSA's in trouble even though Breaux, KY, is on board

SSA is using part time work incentive specialisits, no new staff, which jeopardizes the implementation of the new program.

NICL is adding MCS to access issues, will create an info sheet with solutions, how to remove barriers.