Confer~nc~ Re~ort

First National Consumer Conference

.June. 19,20 & 22, 1985

College of Notre Dame

Published by the On Our Own Center of Baltimore 5422 Bela:lr Road Baltimcr0, lfarylar:.d 21206

DISCUSSION

Alternatives '85 was the first funded national conference for persons who have spent time in psychiatric faciilities. It was held Ju~e 19-22, 1985 in Baltimore, Maryland at the College ~f Notre Dame. On Our Own, Inc. , in Baltimore hosted the conference.

Funding for-the conference became available as a result of lobbying by "primary.consumers" (in the language of our grant) at the National Institute of Mental Health. The money was awarded to the Community-Support Program of the Maryland Men~al Hygiene Administration, then, in turn, t; On Our Own, Inc., Baltimore·. ·

Following registration, four hundred participants convened in Doyle Dining Hall for dinner, probably marking the first time such a group had gathered together for dinner behind unlocked doors.

After dinner, the group discussed our concerns with Neal Brown, Chief Community Support and Rehabilitation Branch, National Institute of Mental Heal th. Sally Zinman, California Network of Mental Heal th Clients, moderated the discussion.

---- '--------•--- ·- -~-•---· ---- - -·---·-·-- ------------ -------. Neal Brown spoke on the development of Community-Support Programs,

toncerns of housing; health care benefits, social rehabilitation, linkage with Community Mental .Heal th Centers and famil~es and providing money to State Community Support Programs.

Before 1978, discharged. clients found little sup.port in their community. Community Support Program funding constituency is primarily "consumers" and families. Currently there are funding programs at U. C. L.A._ arid on the West Coast, and the Res~arch and Training Center in Boston on ~he East Coast. These grants enabled the California Network of Mental Health Clients to develop a manual on how to start groups. Also the funding has helped establish Judi Chamberlin's Office for Networking, a technical assistance process to help persons starting groups and to fund the National and New England Teleconferences. Neal stated he is most proud of the states of Maryland, Michigan, Vermont and Ohio for promoting self-help. His office provided money for Alternatives '85. Neal then introduced_ Jacqueline Pa;rrish, Program Manager, who both showed their concern by working directly with consumers and families.

Following Neal's dialogue, there was an open mike during which persons attending the conference brought to Neal's attention their concerns.

· The evening ended with a "Get Acquainted" party ln the lounge area.

On Thursday morning, all att.endees met in Le Clerc Hal 1. Peg Mccusker of On Our Own, Inc. gave welcoming .. remarks. Judi Chamber! in, Mental Patients Liberation Front, Boston, then gave a history of how Alternatives '85 came into being.

1HSCUSSION Page 2

Judi spoke of how she had been .treated in 1966 while in a psychiatric institution. Using only drugs and techniques of control, without anyone bothering to listen to her., she was feeling terrified, alone and embittered. Five years later~ after founding the MeQt.al Patients Liberation Project in New York, she finally came in touch .with others like herself.

In 1972, the first "International Conference for Human Rights and Agains·t · Psychiatric Oppression" was attended by persons from around the world. Still in existence; it receives no funding. ·

Judi noted, "While our famili~s and friends tell us to 'forget our past experiences, we ~arbor deep re&ctions and feelings ·to the health care system. We get our support and understanding from one another . ."

Today, Judi states, there are many groups; some support groups, some rights activists groups, while others favor alternatives to medication. Be­cause the psychiatric consumer makes up a pluralistic coalition, it is difficult to get funding. Even with such diversity we remain linked as part of the rights movement. u \ t; ,. ,. \; d

More and more peo-1Ll.e are _ _§peaking_out_ at head.ng_s, in_ letters __ to -·~l':!~----- ----· _ .. _ editor and in state capitals. We ~ave met for one year via the National Teleconference and, as a r~sult, there have been many calls suggestirig the for­mation of a national organization. Judi then asked the audience to consider the need for a national o·rganization. "Our needs and our need for change can be heard; we can make a difference," she said.

Judi's talk was followed by Joe Rogers of Project Share in Pennsylvania. He also spoke of the 30 year struggle of persons desiring change. "Only by organizing and mobilizing can we be heard," he stated.

Comments were then made by people in the audience regarding past and current struggles in many areas of the country and changes that have resulted because of strong commitment on the part of the organizers.

Workshops were presented following the large meeting. Two groups of each workshop were presented twice. Not·all workshops were taped.

Page 3

STIGMA WORKSHOP

This workshop held during Alternatives '85 featured Marcia Lovejoy, Project Overcome, Sally Clay, Portland Coalition for the Psychiatrically Labeled, Don · Culwell, Reclamation, Inc. as presenters.

Marcia Lovejoy began the presentation. Project Overcome began in Minneapolis in 1977 • Their· primary mission is as a speakers bureau. They have spoken to 40,000 people. One year prior, they began publishing a news letter, "Voices."

Marcia told of the difficulty many people have speaking in public. For an "ex-mental pa~ient" it is even more difficult because of the stigma. "Stigma, the negative way we are viewed, can be found in 4 area·s • 11 she said. The most common is from the general public; films such as "Psycho", "Halloween" and "Friday the 13th"; movies, novels, television. Tiuough the media, the general public is continually reinforced. Marcia repeated, then, what many of us continually present in speaking. The fact is that studies have proven that persons with mental health problems are no more violent than the general public. Marcia believes that we, perhaps, are more likely victims of violence.

-~~d--seul'-ee-e-f.-s-ti-gme:-is--t-ne -ment-tJ:1-he-a:lth·---p-~ession. · 1·1·Pro-fessio-nals·· -

see us as children, helpless and sickly, only needing help from them, they think we have different needs and that we cannot help each other," Marcia believes.

A third cause of stigma comes from family members. "They are angry, ashamed and feel they need to control us," Marcia said. ,

Lastly, the way in which we view ourselves adds to the stigma. "I am nothing but a mental patient." Marcia repeated a statement many of us have used. She said, "I knew I did not have any rights because of the way I was treated, not like other human beings are treated. It is hard to get out of the habit of labeling ourselves."

Marcia then told of buttons her group sells. "Shrink Resistant" - This has to do with the shrinkage that happens in our lives once we a·re labeled," stated Marcia. "Everything shrinks, our family, friends, money, belief in self, job opportunities, and employment. Project Overcome works to be shrink resistant," she concluded.

Sally Clay, Portland, Maine continued the discussion. Sally said "Stigma is described as a mark of shame. That there is a spiritual element to our experience." She spoke of the power and energy that was present at Alternatives '85. The Portland Coalition has produced a slide presentation with funds received from grants from NIMH Community Support Systems and the Allianc~ for the Mentally Ill.

The workshop continued with the slide presentation. A female ·speaker is the narrator. She says; "Stigma, according to Webster is a mark of shame. Fo-r. Pix thousand years people like me have been marked as evil, shameful. Biblical times, madness was seen as possession by u_r\clean spirits. Visions and. hallucinations came to be consider~d a product 6£ sin, a force of evil, a threat to society. Cruel and brutal measures were taken against the "mentally ill. II

STIGMA WORKSHOP P,a_ge 4

. '

She continues, "During colonial times in the United States-, we 'sup-human beings' were driven from place to place· like mad dogs. They said we were possessed by Satan, we were hanged as witches. When we were not murdered outright, we were chained and warehoused in conditions of filth and degraqation.

"In the early part of this century we were treated with humiliation and cruelty. Some of this remains today, such as E.C.T. Now, in the late twentieth century, "mental illness'' ts described as a genetic/biochemically caused disorder. We think

II • "Wh we know b&tter than the witch hunters of the past, ·but do we?, she quen.es. y do I have to hide my face?"

She asks "What happens today in the twentieth century to those labeled 'mentally ill'? Stigma today starts as internal feelings and extends to the

I mental hospital and the shrinks office. Here we are told to express our own inner feelings. We are told our feelings are twisted and we have made a mess out of our lives and we believe that."

"We may not be physically abused but we are nevertheless made to feel sub-human. What is called "mental illness" is not like a medical illness. Both the diagnosis and cures are illusive and· uncertain even by psychiatrists. "Stigma is the price

--- ar·tm,~stm-·c-ontt:naes. ''The-sE~gma r.rn oegan-auYiTignosp1Xalizaeron rs- -­reinforced as soon as the patient returns to society."

The slide presentation continues with examples of two people leaving insti­tutions and their struggle to survive in the co~nity while fighting the stigma. One re-released found Amity Center, a community rehabilitation program founded by the Alliance for the Mentally Ill and the Portland Coalition. Activities are scheduled by the clients. There is no stigma. Meals are cooked by the clients. There are also classes, crafts, exercise, job skills.

The A.M.I. of Maine is/a support group of caring families. rights, advocate for changes in the fuental health system; testify government councils and try to change the attitude of the public. published a "Mental Patients" handbook.

They work on legal at hearings,

They have

Don Culwell continued the workshop. As a child, Don said he and his friends referred to those in institutions with the usual negative, stigmatizing, prejudicial terms that are used for the "mentally ill." However, now D~m says: "I f;i.rmly hold the belief that it is not humorous to take advantage of someoi;ie else's disadvantage and to form your humor around that."

Dr. Harry Emerson Fosdick, himself a former "mental patient" holds the theory that the main cause of stigma is the tendency "to put one's self up by putting others down."

Don believes there is something that makes-one person better than others-and that is "A person's expression of the highest degree of love that they are capable of."

...

STIGMA WORKSHOP Page 5

Don quotes from Sidney J. Harris, "The three hardest tasks in the world are neither physical feats or intellectual achievements but moral acts to return love for hate, to include the excluded .and to say- I was wrong."

The workshop continued with a discussion by all participants.

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'\ Page 6

ELECTROSHOCK TREATMENT WORKSHOP

Although psychiatrists present themselves as the experts in• electroconvulsive treatment, Leonard Frank, the ·co-leader.of the ECT workshop, believes we, the consumers, are the experts.

Leonard was committed in 1963 by his parents who had the expectation he would be an entrepeneur. Thirty-five ECT treatments were administered along with 50 insulin coma treatments resulting in a memory loss of two years of his past.

Leonard rel~ted that insulin shock treatment absorbs all of the sugar in the body, As a result, the brain's cells begin 'feeding' on themselves. Cell starvation kills brain cells. The psychiatrist decides when to revive the client and many clients have died or remained in a vegetable-like state if revived too late. As a resuit of a resultant learning disability, Leonard spent six years relearning from high school to college years.

Twelve years ago, Leonard became involved with Madness Network News. In 1974, he helped found Network Against Psychiatric Assault and has picketed, as well as

____ marc;ged against hospitals that use involuntary ECT_._ __ ~a_l} _ _FraDQ.t~~Q. now has_a_. __ moratorium since '84 against ECT., Thirty states have legislation restricting ECT including a promotional campaign against this mode of treatment to educate ECT patients.

In 1978, 22% of physicians in the American.Psychiatric Association had employed ECT; 66,000 physicians have hit the button -- the button that has caused brain damage, memory loss, learning disability, fear; anger, apathy and_anguish. The clients may be disabled to the point they cannot fight back, as their intellectual level is reduced, they experience a loss of motivation. The consumer movement is small due to the effects of psychotropic drugs, indoctrination and assault when 25 to 30 million clien~s experience psychiatric assault each year.

The second facilitator of the ECT Treatment Workshop, Ted Chabasinski, had seven shock treatments when only seven at Bellvue. He was raped and sent to foster home care with memory loss to the extent he no longer knew the name of his best friend or his way around his neighborhood. When he would cry. he was told the crying was a symptom of his mental illness. He spent 10 years in Rockland State. After release to a room and board care home, throu6h motivation he obtained a position in New York, trained as a laboratory technician and worked his way through college with a scholarship, never discussing his past. Discovered Mental Patients Liberation Project in 1971 and began dedicating his life so that others would not have to go through what he. had .

. The public hearing on obtaining an injunction ·against ECT in Berkeley had 45 witnesses against using ECT -- only phsycicians were in favor and the court proceedings received much publicity. Other groups in support of minorities rallied to the cause. 807. voted to ban ECT in Berkeley. The American Psychiatric Association is still feeling the shock waves,

ROUNDTABLE-DIALOGUING AT A NATIONAL LEVEL FRIDAY, JUNE 21, 1985

A roundtabl~ discussion was held during Alternatives '85. Presenters were. Preston Garrison, Executive Director of· National Mental H'"alth Association; Leslie Scallet, National Association for Rights Protec~ion and Advocacy; James Ho~e, President, National Alliance for the Mentally Ill. Responders were Sue Budd. Project Acceptance and Brenda Bailey, On Our Own - Baltimore with Rae Unzicker, Mental H~alth Advocacy Project - South Dakota acting as moderator.

. '

Preston Garrison began by congratulating everyone for·their time and effort in getting to the conference •. He felt this demonstrated·ihow the mental health system is changi~g. He told us of his first experience with psychiatric illness~ when his father was taken away for a year to a state hospital because of sericus depression during Preston's childhood.

He believes work of all advocates is important. The MentaJ. He::.ltl.t Association in his opinion, has the broadest array of advocates. Tne Association was started by C([;ifford Beers, a: former patient who was suojected to the abuse, poor conditions, lack of treatment and activities that are complaints we have all experienced. He decided to work along with the professionals to make hospital

____ t.r.eatment more humane... _____________________________ ------ - -------.

Today, Association membership includes ex-patients ► family members, advocates and professionals. The members try to involve as many people as possible in efforts to change psychiatric institutions, civil commitment laws and to protect patients' legal rights. When he said he would tie happy when there were no more psychiatric facilities, there was a brisk round of applause. Until then, Preston believes, we must work together for options in the community as a unified group.

He knows that ex-patients are not particularlr popular. In his hometown of Alexandria, Virginia, there was funding for a group home.· When the neighbors learned the home would be in their n~ighborhood, six of them bought the home to prevent it·s establishment. He strongly stated that this cannot continue, to another round of applause.

Preston would like consumers to work together to assist the national or­ganization. Mental Heal th Associations could provide interested_ consumers with information to create an agenda. We could then coalesce with other group_s in lobbying Congress, the White House, the Department of Health and Human Services, state and county legislators; all who decide where government'funds are spent. He ended with a pledge of assistance to ex-patient advocacy groups of the National Mental Health Association and stated he would urge the division and chapters to also pledge their support.

Next, Jim Howe took the podium and explained tne Maryland Coalition. The­Maryland Coalition is composed of the Mental Health Association, Alliance for the Mentally Ill, Maryland Association of Psychosocial Services (an organization of community rehabilitation program) and On Our Own, Inc. Although not in

''ROUNDTABLE-DIALOGUING Page 8

agreement in all areas, the coalition lobbies for funds for a place in the community for persons with psychiatric problems. He explained how government budget analysts' eyes l:4?jlt up when a former patient testifies who is now working (i.e. a tax-user .that has become a taxpayer.) He urged the audience to coalesce. at a national level.

Leslie Scallet gave a brief histciry of the National Association for Rights Protection and Advocacy (NARPA). NARPA began in 1980 and attempted to provide a common ground foi; all. They consciously tackle advocacy issues. National Associatiop for Rfghts Protection and Advocacy memb_ers are survivors, attorneys, mental health advocacy program members, protection and advoeacy proponents, as well as Mental Health Association and Alliance for the Mentally Ill members.

In 1984, the NARPA conference was held in San Francisco and a set of priorities was formulated.

Members are avid followers of the Weicker hearings which initiated s. 974, "Protection and Advocacy for Mentally Ill Persons Act of 1985."

L~slie Scallet believes that it is extremely important that everyone work together. She believes that the National Association for Rights Protection

,I

- - and---Miv-eeac-y--p-rovides a -uniq-ue-umb-re-H-a---un-de-r-wh±-ch-we can coatesce--over-advocac"'y-­issues.

Su Budd responded to the panel with some precautions. "The complexities," Su said,"are great and there are no easy solutions." She believes that one must keep in mind the diversity of the groups. 'Su feels that it is important for each group to keep its own integrity and also that professionals do not end up organizing ex-patient groups.

Su states she knows that the system needs drastic change; some consumers have been lucky, some not so lucky, some of us know that it· is not a safe system. She wondered how consumers become part of the system. She voicedthe wish to abolish the state system but acknowledged people do have problems who are currently in this system.

She emphasized the need to look to the future, the need to educate others, particularly to reduce the stigma associated with use of services.

Su ended by stating that much progress has been made since '68 when she was an inpatient but much remains to be done.

Brenda Bailey remarked how proud she was that ex-patients had come together at a national level as many consumers are now trying to start groups and centers. She wishes to erase the stigma that can hold a persop back. She feels primary consumers are the underdogs. Brenda wants to increase public awareness of the fact that ex-patients are human, too; that just because someone may "lose it" from time to time does not mean they cannot still be treated humanely. When asking for help from an institution, we have an expectation that help will be given.

The panel discussion ended with a question and answer period.

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Page 9

RIGHT TO REFUSE MEDICATION WORKSHOP

The workshop, "Right. to Refuse Medicatio.n" was well attended, presented by Jay Centifani, Patrick Reilly and Judi Chamberlin. Judi explained how the right to refuse treatment laws actually stemmed from the ex-patient movement. The right to refuse medicine is the same right citizens have in all other areas of the practice of medicine.

In '75, just at the time members of the Mental Patients Liberation Front began visiting Boston State Hospital, attorneys were beginning to listen to complaints coming from persons in that institution.

Patients began to feel empowered -- Ruby Rogers, a client at Boston State, due to forced drugging and seclusion became so desperate she started a fire, burning herself to get out of the psychiatric institution to a medical facility. Ms. Rogers and six o'thers became plaintiffs in a class action suit: Rogers vs. Mass.,_Right to Refuse Treatment. Judi explained how the case progressed. At one point the case reached the Supreme Court but was sent back to local courts. Problems still exist because clients are not familiar with their rights. Patients'

- ----rights· ar.e-not·-b-eing- taught ~i'"t,.,o-__ .,..c,.,..olT'o,...,s'T'an=1e•...-.:.--'------

Pa trick Reilly spoke of the Rennie vs Klein suit in New Jersey. In New Jersey, a public advocate is an extension of the public defender concept. Public advocates represent the people and also attend hearings. When people in New Jersey's institutions complained about being force~ to take psychotropics, the public advocates simply advised them to leave the hospitals involved. Rennie, a public ad'voc;:ite, felt the problem was not being addr_essed directly. The class action suit, Rennie vs Klein resulted in exposing to the judge problems with physician incompetence. The judge called for a second opinion procedure before medicating patients against their will, Patients now have the right to refuse but because the second opinion procedure involves a psychiatrist who is a part of the same staff, the right to refuse is only an illusion.

Jay Centifani fielded discussion on laws throughout the country dealing with the right to refuse medication. When declared incompetent in Massachusetts, a guardian is appointed; a judge makes guardianship decisions. In New Jersey, advocates in hospitals work for the Department of Human Services while in New Hampshire a board system approves medication.

The Mental and Physical Disability Law Reporter has chronicled milestone cases on the right to refuse medication.

Using a decision-tree analysis, one can weigh ~he risk, cost and gain of liti­gation, whether alone or class action;an administration solution, working with the particular institution involved; lobbying the agency that runs the hospital, .or secondly, appealing to the court system whether state or federal. In Colorado, a pending court case involved 25 conditions being met before involuntary medication of a client in a hospital can occur. Rather than appeal directly to federal courts, the state court system shows promise, albeit run by officials involved in cornrni tment hearings as well.

RIGHT TO REFUSE MEDICATION WORKSHOP Page 10

The concept of freedom of thought; of speech, of.medication choice, is helpful in state litigation, ·Jay explained. Also, right to privacy in litigation 1s beneficial in client cases. Even after cases are won, legislative change can make the case moot. The goal is to ensure that mere commitment does not relinquish one 1 s rights to refuse medication. A federal court rarely will overturn a state legislated law supporting the right to refuse.

A qtlestion was raised as to how to enforce these rig~~s. Jay suggested that social workers be trained on each ward in advocacy. Advocacy intervention is especially need~d in criminally committed. cases when the client is often medicated before found guilty. A loophole also occurs when a client is found, in some states, to be "functionally" incompetent.

In. the community, services are now sometimes withheld if the condition of taking medications is not followed, e.g. "Not cooper.gi:ting in treatment."

The Romeo vs Youngburg case states that psychiatric patients are entitled to the same standards of care as in medicai practice -- a violation of ordinary medical care standards are no longer tolerated in this Pennsylvania case. A

- -drent r-s civ1.f riglifi are not to pe ma1pr.actfce·a upon-:--T serTes ots'imilar cases have followed throughout the country. The Supreme Court, however, has refused to rule on involuntary medication issues.

Other areas of law which have been heard by the higher courts can apply to the issue of medication, Jay noted. In the issue of euthanasia, the patient has the 'right to die'; the right to refuse medication is included in this choice as well as the idea of obtaining permission from the client for medical procedures, whether or not they are deemed necessary and in the best interests of the client by the doctor. The law is supportive to client rights in.the area of the right to die.

In addition, some cases in the area of rights infringement in the case of mentally retarded clients who were overmedicated as well as in cases where criminals have been overrnedicated at the time of their trial are precursors to future litigation success for psychiatric patients.

The choices in seeking change through the legal system, Jay,explained, involve injunction (stopping the practice), and/or damages.· Seeking.damages can be quite effective, it was noted, as physician sensitivity to large amounts of litigated damages are great -- and shortly, Jay expects lawsuits will become more common­place against individual physicians, hospitals as well as the drug companies themselves.

An audience member noted that present psychiatric knowledge and current literature on, for example, tardive dyskenesia, is available and T.D., when it occurs, is the doctor's responsibility since there are alternative dosing methods which make this condition virtually preventable. Drug companies, as in the case of Smith, Kline and French insist they indicated to clients that, all along, thorazine was dangerous and unsafe. in response to a suit for liver damage by.a user.

Page 11

EX-PATIENT ALTERNATIVES WORKS_HOP

Su Budd (Project Acceptance), Peg· Mccusker (On Our Own - Baltimore), Christy Disher (On Our Own - Montgomery County), and Brenda Bailey (On Our Own· -Northwest Baltimore) were the workshop leader!:!.

Su began by stating she had been in a psychiatric faiility and told she was "chronically mentally ill.'' She explained that many people are told this and it becomes a self-fuifilling prophecy. The consumer continues to believe they are sick, need physicians, medicines and to be taken c·are of. ,. For some, that becomes an easy way out.

Most need one or more persons who believe in them; guide, encourage and support them and they can return to a productive life.

Su believes it is important to make ex-patient groups self sufficient by performing services in the community or running thrift stores or another type of small business.

She nqted.that it's been observed that being in a position of leadership -~-can be._lonel_y_and _she_ agrees with_ that observation. __ She asked the group if they

knew what it is like to b(;! a female ex-patient that suddenly is an Executive Director of a consumer run alternative.

She observed that continually striving for funding and getting members what they say they want takes time, paperwork, necessitates dealing with bureaucracies, leaving little time for support which is what was the original purpose of an ex­patient group. Sufficient funding is required to pay bookkeepers, accountants and the li~e. ·

Members are far more likely to come to an ex;..patient alternative group when there are life crises than· to therapists, family members or other friends that may not understand their feelings.

Su _related a concern voiced by the American Psychiatric Association at their annual convention. They are concerned we may be dealing with those who have "severe problems." If we are, it is because they are not having their needs met by their own treating psychiatrist.

The Baltimore group early on was funded as a statewide demonstration project. Apparently, On Our Own, Inc. - Baltimore, demonstrated it could support and act in an advocacy role. The catchment area was then enlarged to include all of Central Maryland, funded by the Mental Hygiene Administration, Henry Harbin, M.D., Director. On Our Own now receives funds as a "community mental health program." Peg related Dr. Harbin's greatest concern which was that the pr~sent mental health system_ might refer anyone to On Our Own when they could not figure out what else to do with them. Dr. Harbin is often correct.

On Our Own does deal with people who have serious problems. Mos·t of the ~ember are involved in some manner w_ith the mental health system; for example, one caller was in a state facility; the system had given up on her. _On Our Own staff listened to her for hours. She wanted us to sue the facility because she .felt that staff had

~ EX-PATIENT CONTROLLED ALTERNATIVES Page_l2

stolen some of her things. She was at "Alternatives '85." Apparently, none of ·us could listen or help. She was last seen taiking to a tree • . Now she is back in that facility. Another member is currently in a private facility;· one she 1 ikes , arranging for her needs to be met. . She was at· the conference, Some of. our target population is in private.therapy, group therapy, community mental health centers, community :rehabilitation programs, or self-help groups. People using the ce.nter have a wide variety of problems and needs. We do, at times deal with people with se.rious problems in crisis.

Su interject~d, III£ the American Psychiatric .Association members are getting all paranoid, I recommend they have a few fifty minute sessions, to swallow some of the junk they have been handing out; Better yet, voluntaiily have themselves locked up in a state facility. Even we would not.recommend our private ones. I will be glad to refer the American Psychiatric Association to the few good psychiatrists who will be happy to tell them On Our Own knows how to deal with people with serious problems or to know where and who to go to for help and referral for our clients."

Su also spoke of being up all night with a friend and, as a result, having to sleep in, the nextday. One's schedule may not permit this, she noted. Additional salaried members are needed to be able to have flexibilitY. for 24 hour~ availability to the members for support in the event they are in crisis.

Su spoke, as did each of the•panel members, of how the group started with just a few people and went through long periods when few or no people cam~ to meetings until, finally, the .idea caught on. Most started out waiting on doorsteps, in cold meeting rooms or using donated space.. She stressed to "hang in there," keeping in phone contact with those interested, and waiting it out. Most groups start and succeed in this manner by those with the patience to make it through the early days, struggling without funding, just a.belief that.ex-patients can understand and help other ex:.apatients. These people are now th~ group leaders/directors of ex-patient-controlled alternative ~roups.

Peg reiterated the history of .On Our Own. she told the workshop group, "I remember well, sitting in a cold basement in a church with no heat. A few months ago, I drove to the parking lot and looked at the window of the room we had first been in .. Things have changed in Maryland; we have a center which offers a broad array of services; we have changed mental health law; our name was on a lawsuit as "next friend," against our funding source. This is cooperation! Everyone from the Governor on down knows who we are. ·

"A second center is open in Montgomery County, groups are in Catonsville (Baltimore County), Howard County & Even Keel (Montgomery County) . Our mailing list barely filled two sheets of pape·r. Now there are hundreds and hundreds.

"We are not trying to obtain funding for interim/respite care. A second corporation is being formed that will be consumer controlled plus hiring of a few selected professionals. We've been promised a house in Baltimore County by the Director of their Bureau of Mental Health: Mehdi Yeganeh, M.D."

·. ,EX-PATIENT CONTROLLED ALTERNATIVES Page 13

. Next, the workshop participants heard ·from Christy Disher, On Our Own of ·Montgomery County. She stated o.o.o. - Montgomery County met for two years in Rockville. It was also a slow process. with only three people for seven months. But they continued meeting, continued to stay on the telephone. The first year they had only regular meetings and social activities. They received much of their financial support via the local Allianc.e for the Mentally Ill and Mental Health Association. They used a Social Rehabilitation Program unit for meetings. The federal government, Maryland's Mental Hygiene Administration - Southern Region and the County gives funding to On Our Own - Montgomery County. Montgomery County has given.them a house. Christy.mentioned that they had been encouraged and assisted by Mike Finkle and Peg Mccusker of On Our Own - Baltimore.

For 14 years Christy said she was not aware that she was in need of help, When she was able to .work she felt isolated and thought she was just different. She has found that people with similar backgrounds could help her. They began sharing ideas, There are always, in any group, internal difficulties. In addition, people have problems with their medicines.

She has been strong in leadership but wishes more members would.challenge her and also help her. She is reticent about asking new members to get more involved.

___ _ _ __ .$1;:t~fe l Ll.L i.s_:.imp.ortant f.o.r_~"lew . grQup.s __ to. .. g,et ..the._.inc.or.pora ti an proc.~e~ss.,._, __ started early on to receive tax f.ree donations and to receive grants. She would like to have a strong board. She has had to make many decisions herself and prefers a broader based, group decision-making process;

On Our Own Baltimore has received funding· for and external problems. A meeting has already been Maryland groups and problems have been identified. in the spriI?,g' with speakers knowledgeable in these

a retreat to discuss both interna} held ~ith representation from all

A retreat will probably be held areas.

Brenda, former president and current board membert On Our Own - Baltimore, began a group in Northwest Baltimo~e City (On Our Own - Baltimore center is in northeast Baltimore City). Because of the one hour plus travel time to the Center, she is using space donated by People Encouraging People at the Schapiro Center. (People Encouraging People is a community rehabilitation program.) They meet every Saturday for two hours. If Brenda cannot be there, Margaret George, On Our Own treasurer takes her place.

A member of the audience asked why there are no group's started in i'nstitutions. They stated, they sat around tables in facilities talking with other persons; they found that the patients have similar experiences, problems and feelings. At the suggestion of our psychiatric consultant, Robert Atkins, M,D., the staff of On Our Own Baltimore will be working with Ruth Haines, the Administrative Assistant, to establish such a group at Spring Grove Hospital Center. On Our Own - the Grove? Why not?

Mike, from Florida, told of the difficult time getting a group started ·there. He is on staff at a community rehabilitation program and when Scott Graham worked there, the project was a family _unit. Mr. Graham now directs Revisions·, a community rehabilitation program in Catonsville. Peg and Melanie Drum, conference partici­pants~ serve on that board~ Ruth, Melanie and others from. On Our. Own - Catonsville, meet at Revisions.

EX-PATIENT CONTROLLED ALTERNATIVES Page 14

Mike started a group which meets two times a month at his home. A question ·came from the audience concerning liability, which can become a concern once one incorporates. Peg said corporationsmu~t have professional liability insurance~ The current corporation papers and these concerns are currently being investigated by Stan Herr, Esq., known to many from. his work with the National Association for Rights Protection and Advocacy· (ARPA).

Major problem areas identified by participants and workshop leaders:

1. Not enough ex· patient-'controlled alternatives

A. Not enough centers in areas ·accessible to all consumers, due to insufficient funding.; all members. cannot readily get to present center locations.

II. Role of psychiatrists/therapists

A. Shrinks tel 1 patients they are "chronically mentally ill 11 and will always be sick, need to see physicians and take medicines, often becoming a self-fulfilling prophecy.

B. "Paranoid shrinks-" - On Our Own can and does, in fact, help those with ------~seri9µ~ _ __p_robl_~rp_s_._ _________________ __ _____ _ ________ _

C. Physicians and other mental health professionals may give up on people and then refer them to 0.0.0. without further suggestions for' supports.

III. Support meetings needed for group leaders/center directors.

Few have been formally educated or received more than experiential training in busine·ss administration, methods in social work, or helpful counseling techniques. Often supportive meetings can increase the self-confidence of the members to continue working effectively if without those ·coveted "initials,'' e • g. , M. D. , Ph.D. , M. P.H. , M. S .. W. , etc •

IV, Not enough paid members

While mental heaith professionals usually work an 8 hour day/5 days a week, th_e 0,0.0. phone rings at all hours and no one can be expected to be "on call" always.

V. As with any non-profit organization there are problems with boa-rds, members, getting volunteers and funding.

VI. Liability Issues.

As a corporation we can be sued.

Solutions:

1. Redirect funding - more cash flow into consumer-controlled alternatives. 0.0.0. has shown this concept works for less money than is now allocated into facilities and esoteric research projects.

'·EX-PATIENT.CONTROLLED ALTERNATIVES Page 15

2 .. Educate psychiatrists/health care professions. By word of mouth, literature and seminars, explain in their terms and through our statistical recordss that o.o.o. is effective in a crisis· as a first or a last resort of choice by the consumer.

3. Additional staffing.· We can offer.the support needed but require funds for additional paidworki□g members, Professionals and others in the system only work a 40 hour week; we also have similar limits on our ability to cover 24.hours, 7 days a week.

4, Funding for group leaders and alterriati.ve directors to meet and discuss external and internal issues, cooperation and support to prevent burnout.

5. Funding for· insur~ce.

·All nonprofit groups need be prepared for a lawsuit •

... -·-·-·--- - --·- -·· ---------- __ ., ___ ·-··" - ··---··--·- ---------

ADVOCACY AND LEGAL RIGHfS WORKSHOP

The Advocacy and Legal Rights Workshop was conducted by Jay Mahler, Mental Health Consumer Concerns, Martinez, California; Lucy Lord, Claremont Alliance· Limited, New Hampshire D·ivision of. Mental Health and Developmet1tal Services; Renee Bostick, Ohio Legal Rights Service; and' Mike Finkel, On Our Own, Baltimore.

L·ucy Lord. opened the advocacy session by explaining the different types of advocacy and what· generally are the client's· legal rights in most states. In­ternal advocacy would be an advocate who worked within the system while external advocacy would be someone who would.work outside the system.

She then explored five different advocacy models:

(1) Mental Health Associations (2) Internal advocates - paid by the system (3) Legal Advocacy - attorneys & legal assistants (4) External advocates - consumers such as Jay Mahler and Mike Finkle (5) Parent advocates - the Alliance for the Mentally Ill

Next,·Jay Mahler shared the history of his group - the only external legal ----advocacy organization 1n Califor1iia:-7n7·9og -c--aTifornl.ii' law changed to assure

patients had legal rights. Seven' years later, in 1976, the Mental Health Consumer Concerns organization (MHCC), was formed to act as patient advocates in Alameda County. Private non-private corporation papers prepared in 1976, were not re­turned to them until April Fool·'s Day, 1977. At that time, MHCC became involved in writing legislation, becoming particularly interested in Walnut Creek Hospital. MHCC had 20 members there plus .former staff comp.faining about patient abuse. The abuse issue received much press coverage. Due to· the efforts of Mental Health Consumer Concerns members, community people, particularly in Alameda County, refused to send patients to Walnut Creek-~ Fo-r three or four years . the group studied patient rights and educated the public. In 1980-81 they were awarded the contract to perform patient rights advocacy for Contra Costa County with a budget of $90,000. Seven out of the eleven advocates are former patients. An additional four are on-call, three of whom are ex~patients. Mental Health Consumer Concerns represent people at hearings in California.

Anyone labeled having a mental disorder, if that person is unable to provide food, clothing and shelter for themselves, can be held for. 72 hou:rrs if they are considered dangerous. After 72 hours, the decision can be made to put them on a 14 day hold when the criteria still applies. MHCC meets with everyone on a 14 day hold. Within 4 days after having been put on a 14 day hold, the person must have a hearing by an independent review board. In addition to meeting with the person on 14 day hold, MHCC calls their family and friends, reviews their record if the client asks them to do so.

In 1985, between March 15 and May 6, 76 people were placed on a 14 day hold. Of those, only 20 had to remain institutionalized and those 20 patients changed to a voluntary status. Jay stated, "Our job is to do what they want.

Page 17

• . II If they want to stay, they are advised to stay on a voluntary basis. Mental Health Consumer Concerns also represent people who have a variety of complaints such as complaints about medication; restraining, or being told they cannot have visitors. The problem in California is that the law is based on rights of people in institutions~ not based on· rights of people in the community. MHCC would.like to do more for community people who also have rights but the organization is not funded to do so. The other problem with MHcc'is that the internal advocates are employed by their California Department of Mental Health. · They must still answer to the local Mental Heal th Director. Jay's d_iscussion ended and he handed the microphon_e over t6 Mike Finkle, O_n Our Own~ . Bal ti~ore.

On Our Own, Mike e,cplained, is basically . funded to operate a Drop-In Center. In 1982, On Our Own .sponsored a .ten week legal rights course along with the University of Maryland School of Law, with rotating instructors; psychia­tri~ts, lawyers, consumers, state.hospital employees and families. On Our Own then formed a group to teach legal rights in the major. s-tate hospitals. The state hospital employees and the patients gave good feedback to the project members cin their efforts. After that experience, On Our Own focused on legislation at the state level for patients' rights.

After _the Mental Health Systems Act was defunded by Reagan, On Our Own tried to legislate for some time, even coalescing with otheuroups and sin_ce-,--_ hiring a lobbyist. On Our Ownf the Mental Health Association, the Alliance for the-Mentally Ill, Maryland .ASsociation of Psychosocial Services began advocating for changes in st_ate law. It was an arduous process - after three y~ars new laws were enacted expanding patient rights~ On Our Own began educating fogislato·rs and becoming friendly with them; learning about the whole process of lobbying and changing mental health law. The group has proveµ that ex-patient consumers can make a difference.

In addition to providing a Drop-In Center and legislative advocacy, On Our own has also been involved in litigation, aiong with Professor Michael_ Milleman of the University of Maryland School of Law. Professor Milleman addressed the concerns of consumer conferences such as Alternatives i85~ only just for the state of Maryland. After listening to the types of questions and answers former patients offered, Mike Milleman decided tofile a class action suit. The suit cited the State of Maryland for providing inadequate legal ~ervices for persons in facilities. Before_ the suit, here in Maryland, an institutionalized person had a public defender to come to their hearing. ·If in a state facility irt Maryland and if one wanted a divorce or needed benefits• no lawyer had been available,.

On Our Own signed on that suit as "next of friend." The plaintiffs were residents of state psychiatric facilities. The suit was two years in_ the courts filed in federal district court in 1983 and just settled out of court. Now the State of Maryland is providing about a half a million dollars to an external advocacy

.organization for. lawyers to service all of the state hospitals. An additional helpful internal structure in Maryland is what is called a client's,rights committee. Mandated by the Attorney General's.office in all state hospitals; this 'internal grievance procedure committee invites consumers,· patients and family members to serve as members. The patient can. 'file a grievance with the patient's rights committee and they try to settle· it. Ifnot settled, the· grievance can be appealed

ADVOCACY AND LEGAL RIGHTS .,. Page'l8

further. On Our Own members serve on the client's rights committes. Networking is very important-'- getting to know the people who control the system. On Our Own here in Maryland knows some of the~e· people by their first name. ·We've met with _the Secretary of Health .and Mental .Hygiene, the Governor, Senators, and the Superintendants of state institutions •. If a complaint comes to our attention from an inpatient, for example, we can simply pick.up the phone and ~all hospital superintendants and resolve the problem very easily. Gett.ing to know these people and getting their respect is important. Lawmakers and health care system policy makers will respo~d better.

We passed into law last year that the patient had to .be informed of their rights upon admission to a hospital ·and that their rights ·be posted, clearly visible 9

in each institution. As a result, a 20 page pamphlet containing al11·.the rights persons have in a psychiatric facility was prepared.· Before patients only had four lines posted on a bulletin board. Now we have an in-depth pamphlet everyone receives upon admission to psychiatric institutions in Maryland •.

Lucy Lord continued the discussion with the state of advocacy in New Hampshire. Lucy is an internal advocate. The Mental Health Law Clinic is their external advocacy organization. Its _Executive Di.rector works as a farmer during the summer. In Lucy's· qepartment the workers form an internal advocates' office of:,client and legal services. Their comp_l_ain!;_jnvestigators_ a.r.e .. .empleyruLb,r-._t.h.EL.ins.ti.t.ut:i..o.M---o.r-. the mental health centers.- very internal "internal advocates." Case managers are rights protection specialists. Sometimes they're not the best persons to charge with protecting one '.s rights.

Part-time, Lucy encourages peer advocates ·and sees to· it that there is a funding mechanism for peer advocacy; Lucy also works in.-1the area of litigation and legislation. The Mental Health Law Glinic also has the goal of educating the legislature. 'Lucy monitors compTaint investigation, complaints themselves and makes sure that fieldwork is on target. She does work with the a.dministrative hearing process as well. The probiem with being an internal advocate can be that you are "inbetween a rock and a hard place:' much of the time. ·

Renee Bostick from Ohio was next to speak. She works with the Ohio Legal Rights Service. Renee also works for the National Association for Rights Protection and Advocacy, an organization made up of consumers, professionals 1 and some ad­vocates from around the nation. Renee has worked in rights service for five or six years. The movement w~s first recognized in 1975 in an act by the G~neral Assembly. Ohio had one of the first state funded external advocacy organizations. 'In 1976, Ohio created a Bill of Rights on behalf of patients. The Ohio Legal Rights Service (OLRS), is the enforcer for their patients' Bill of Rights. The agency employs 23 people -- lawyers, social service people, and support staff. The agency works on law reform at a state level, as well as representing individual clients. Repre­senting client's wishes is the most important aspect of their work •. "If health care workers would just listen to their clients, peo~le wouldn't need to be paid to represent patients on legal rights issues," says Renee .. Their office does litigation and negotiation, technical assistance, information and referral, publishes a newsletter, the Apologist, continue networking, and they've started.a new program where consumers are the internal advocates. Renee feels there are some pros and cons in being an external advocate. The consumer pros are working alongside

ADVOCACY AND LEGAL RIGHTS Page 19

attorneys, giving them more credibility and clout. Calling from a legal agency, stating one knows some· lawyers or saying, "I'll call my lawyer," helps. Renee believes one has to .be manipulative and have power. A disadvantage of working with lawyers is that people with legal training may have a very narrow perspective. For example, a lot of .things that happen to consumers are unfair. Unless their lawyers can litigate an issue, they may not want to be bothered with it; rather a narrow perspec­tive. Litigation can be endless. Litigation cannot resolve all the issues invol~ed. The consumer's network.can be effective in dealing with. some of these problems. To be an advocat~ you have to be very per­serverant and to be committed you have to handle stress and conflict. Sometimes, we as consumer.s must· go beyond our own problems to help others deal with the larger collective issues.. An advocate must learn . to work independently with initiative, Our personal problems are political in nature, shared by all of us, The struggle is to break down the barriers, not only for ourselves, but for all of us.

----------- --- -------·-- ----. ---·-·-··--··--· --·-··------···--·-· ·--···-·-

Page 20

FINAL MEETING

The conference, Alternatives '85, laid the foundation for a national movement including moderates and not-so-moderate participants,. commented the group leader for the final meeting. "Each individual can make a difference ·and be heard."

The tone of the final meeting was set when one of the session leaders offered both his work and.home telephone numbers to the audience and explained to a dis­believing group that colle~t calls would be accepted. After the observations about how diverse conference participants were, an open microphone session began.

The audienee began singing together]ed by original songs of a consumer with winsome lyrics such as "as long as you take the blame, he'll (the psychiatrist) play the game." For those more moderate members, a resounding chorus was sung of "God Bless America."

It was announced to cheers that a petition was being circulated to send to the National Institute of Mental Health Community Support Program to fund next year's conference.

·--'·· -The-open mic-rophotte- experience -was-··at times- -sp-ontaneot.1-s; ·at-·-t:imes- planned-·and- · often revealing:

A consumer from New Mexico commented on the energy felt, the pain and growth experienced during Alternatives '85,

Another person found the conference empowering; a chance to ventilate; a time of struggle.

Next, a consumer related the anger brought to the surface about being "put away a common experience, stating that consumers need to work with each other with commpassion. Following, was a, comment about being respectful of differences as well as our common goals in the movement.

A Wisconsin participant thanked the organizers for the scholarship to cover expenses and asked everyone to spread peace, joy and encouragement and to "defend those who cannot defend themselves."

A Utah consumer stated that "We're not supposed to know how to tie our shoes," and gave a short talk on medication as a helpful agent.

A Michigan participant told the group that mental health consumers have been thought ofas quiet, stating, "We're not going to be quiet anymore -- we've been shut up ~or so long. People are not accustome9 to us speaking out and saying "Hey, we' re not going to take it anymore. ' 11

A Kansas participant liked the understanding between conference members and "loved B.11 timore and the East Coast."

Someone from West Virginia referred to their participation in Alternatives '85 as "undoubtedly the great~st experience of my lifetime," feeling in­spired by the group leadership "setting an example" and promising to wo'rk hard

FINAL MEETING Page 21

to establish a West Virginia network.

A consumer from Ohio valued feeli'ngs of mutual empathy because of a common bond.

A New Jersey group member related the po'sitive "vibes" felt, the kindness and caring feelings of the people met, concluding with the statement, "Keep fighting and believing in ourselves."

Someone from Ohio 'icould not express their can.ng or __ knowledge obtained." Referring to the 'normal society' it was stated, "We-are where they want to be. W~ can deal with the problem, accept it and go along with it." The participant asked, "Who are we? What am I?," answering, "We are love," and adding, "With the energy you have given ine I want to give some back to you •.. I love you."

A representative of Changing Directio~s (a Baltimore community rehabilitation center) said, 111 hope-I get to meet you again, 11 and th?t the group repr.e­·sentativcs had·"gotten_a_ great deal out of the conference,"

S:xreone #om M:i.ch'.;i.gan ~tated they wanted to be a better advocate and that they had "met a lot of beautiful,. neat people," ending with an observation: "We know ourselves."

The next consumer shared observations in many areas, asking, "Who in the institution gives the most help? The answer clients give is, other patients." This individual felt moved "seeing the faces of all of those persons who have worked so long and so hard in the trenches thinking they were all alone. And if you look around,·we're not.a'i_one," it was stated.

. .

A Vermont member related the need for consensus observing that certain factions at the confE{rence had more of a voice. This person felt, "We are making history right now." The Vermont member encouraged everyone to tolerate all points of view. "We're injured by the same oppression -- everyone has an_equal voice."

The next group member related that many had expressed anxiety/tension -­"sharing together ·and. building on our own strength. Together is the only way to get the world together."

The group enjoyed a fable with ganized an activities program. inappropriate. His wings were. lead a more normal life."

this excerpt as follows: "The admirals or­The eagle was told his behaviorwas

clipped by his counselor so that he could

Someone from Minnesota compared ·the e~-patient movement to the civil rights movement of the 60s.

An older person gave their biography -- at 5 years old, institutionalized fo:t26 years and told.would never walk or talk.again.

Page 22

Someone from upstate New York observed· that 'lfo groups we can do something about oppression."

A Minnesotian felt that· e~ped:encing pain can be directed in a positive manner asking the group to "remember the children of the :(uture. We can only save them by what we do inhthe_coming year."

. A participant from B6uth Dakota.referred to brainwashing experienced in institution_s- and the ,need for protection from that process, relating the experience of being dir-ugged·up and·told "you're lazy."

AdNew Hampshire participant asked the question "Are you radical or are you moderate?"· The real credential, the participant. answered,· was "we've all been in the pit." This group member asked everyone to live the book, On Our Own.

The next .awn microphone speaker was acquainted with the author of· Mass Murders in White Coats, which relates that the first victims of thewar .crimes ofl 939 and 1945 were 300,000 mental patients. Eighty-five percent of psychiatric inmates were murdered and psychiatrists operated gas chambers at Brandenburg. The friend of the author ·stated that the book relates how eugenics _continues today in the.United States and that psychiatry is examined in the book as the major form of social control.

The next speaker simply stated the biggest exposure to salt of the earth type of people wa~ at the conference.

An Arizonian emphasized not 1:<boking at labels whether external or internal . . -

Someone from Masschusetts told their story: Their mother was taken to an institution when _the speaker was.a child of 11 and at 21, becoming~ child of the government. In hospitals around the cou·ntryysince 1954, this participant felt finally durin~ the Alternatives '85 conference, the member had come out of 'that room,' out of that terrible time, ending by saying, "I love you; every one of you."

The next speaker:r:stated they still felt like a patient but in 10 years or so, "I will be able tol1.hold my head up high."

Next, the need for the restoration of human status and ltuman dignity was related to the group.

The following speaker spoke of invalidation,:with no way out almost "like we do not exist" and of a common bond/solidarity. "What brought us to the hospital is that we are more sensitive, more emotional, living in a world that puts that down -- that doesn't operate that way, making us feel disadvantaged when _actually that is an advantage. We are not c_old, super rational robots putting up a· front. We are real and we struggle that way."

A Kentuckyian facing homelessness summed up his feelings with the phrase, 'psychochemical subjugation.'

-, FINAL MEETING Page 23

A teamster related his belief in collective action - "Don't quit; you can't do it all alone."

Someone· from California .thanked the. organizers stating because of the scholarship it was possible to attend. They added, "Radical is a word that sometimes separates people. _What we have in common is greater than what we don't."

The final session ended by· singing softly., 'We Shall Not Be Moved, just like a tree s~anding by the water, fighting for our freedom' and 'We Shall Overcome' with the verses, 'We are not afraid today,' 'We sh.all liva.in peace,' 'We will all be free,'

The group held hands and offered a spontaneous prayer; a Hindu prayer meaning," I see God in you:'and a prayer in Hebrew.

The tears and Eimotions in the room seemed to reflect a sense of sharing pain and sharing beauty; knowing others had exposed something deep within themselves about themselves, about American society, about humanity; a sadness perhaps that the moment was overi a sense of relief that the intensity had passed; and a joy to have found one another from so many parts of_ the country to have become em­powered, and to be officially consumers with human needs, not labels.

The energy in the room had an unusual presence, a reality all its own; a forcefulness and intensity that each of the group members took with them. The movement continues and we at On Our Own continue also, wherever it may end -­perhaps there will ultimately be an end to oppression in our lifetime.

We hope, the conference report has captured the essence of Alternatives '85. PlE,ase direct' your comments to:

Conference Report On Our Own, Inc .. 5422 Belair Road Baltimore, MD 21206-4205

Note: If there are omissions in the report, or errors, we apologize. The authors take sole responsibfulity for its contents.

-Peg Sullivan -K.S. Girard

We thank our typist, Louis, Familant.

Page 24

SUMMARY OF EVALUATIONS - 'ALTERNATIVES '85

Evaluation forms from the ·Alternatives '85 confe.rence were handed in from 131 attendees. To· assist other groups with future· planning for n_ational conferences, I will try to s·unnnarize·.or list_ comme°'ts on the "Alternatives '85" conference. . '

. Four hundred ex.patients, consumer·s, sucyivors, persons who have spent time in psychiatric facilities from 43 states, -Puerto Rico and the District of Columpia attended the conference. One-hundred and thirty-one individuals completed the evaluation~ 10-were not ex-patients.

The agenda was planned by the National Planning Committee. Most of the workshop.leaders were called and the agenda was again reviewed. Numerous letters asked for agenda suggestions and pleaswent out once a month during the planning for the national conference.

Attendees were asked to rate the following, ranging from 1 (poor), to 5 (excellent).

AGENDA 6 •rated poor (1) 11 II fair (2) 23 II satisfactory (3) 44 II good (4) 41 " excellent (5)

125

6 did not rate.

The conference h~ld at the College of Notre Dame-was :i,.n,tru-ei.b,~s,1.:···sp,1ce available at the time we received the f~nding for .a national conference, for ·the amount of money in our buaget. States holding future conferences would benefit by being informed well in advance about funding giving them sufficient time to locate an ideal site.

SITE

MEALS

0 4

14 34 75

127

0 5

19 44 59

127

poor (1) fair (2). satisfactory (3) good (4) excellent (5)

4 did not rate.

poor (1) fair (2) satisfactory (3) good (4) excellent (5)

4 did not rate

SUMMARY OF EVALUATIONS Page 25

The next area to be evaluated was how much an individual learned at the' conference.

AMOUNT LEARNED 3 Poor (1)

6 Fail; (2) 18 Satisfactory (3) 55 Good (4) 41 Excellent (5)

123

8 did not rate.

Question. :/14 of the eva'luation stated, "During the .conference, did you learn more. about:"

Empowerment .

Consumer-Run Alternatives

Yes 88

· Yes 98

· Starting a National Organization Yes 89

:k*l - some 1 - Nq -- too much ego/power struggle

No 32

No 23

No 30 **

There were several plenary and one regional meeting concerning national organization •. Certainly participants attending these meetings would have learned about organizing.

Question #5 stated, "Do you feel the conference was worthwhile? Why or why not?"

All 131 respondents answered this question. If anyone wishes to see,: each of the responses_, they can be forwarded. Here is a summary of question #5. The overwhelming majoritY. agreed the conference was worthwhile and welcomed the opportunity to be with their peers.· Some indicated it helped with increasing self-esteem and confidence; that it proved ex-patients are capable and determined to have a say in their own destiny; that ex-patients are part of a powerful group. Others felt the conference was educational, that they heard other viewpoints and gained a broader perspective on con­ference issues. Others were motivated to go back home arid try different avenues to improve their own groups.

Several preferred the structure of the workshop and. felt it allowed them to get "some work done for a change." The·workshop!'l gave others an opportunity to vent their frustration.

One respqndent commented, "The conference was worthwhile in that we began to get a national organization off the ground that would give us more legal. pull."

Editor's. Note (E.N't):. Ai: this ~riting, two national organizations .are in the process of forming.

SUMMARY OF EVALUATIONS Page 26

On the negative side, one_ noted that th~re was a lack of unity on the part of the pa.rd::icipants •. A non ex-patient felt that the vocally verbal are empowered, the withdrawn client is looked down on and -ignored. A third person £el t ther_e were issues left out concerning emotional dis­ability, culture shock, panic attacks, rude uninformed employees and misdiagnosed cases •. Another wanted more.structure. .

Ques_tion #6 asked participants if they wanted to -see a similar· con­ference held in the future •

.- . ._,-.

· "Yes, definiteiy," was the respons·e of ail but ope evaluee. Several respondents suggested material be.:sent out earlier. E.NM: On Our Own sent material out early if the name was on :the· mailing list. ' We asked othE!r organizations to pass information on.

Some participants suggested position papers be sent out early. We had asked for them repeatably. The position papers were not· sent '.: to us until the last moment. As a result, instead.of printing them inhouse, we were forced to use a printer.

$everal suggestions were made to have the '86 conference in Ohio or elsewhere in the midwest.

,_

More workable structure was lacking, according to one respondent. Another wanted more pro_fessionals as silent viewers. A third wanted people more prepared.

We realized many people were attending.an ex-patient meeting/conference for the first time and were unaware.of issues, personalities and differences

- - in viewpbint. We, too, ·approached early meetings, whether they be with for­mer patients, withmentiai health professionals or in almost any area, as a learning experience. There are no schools teaching mental he.al th advocacy. We are not funded to train new, groups or centtn:!s-s~xcept for small grants for individuals to teach. We would recommend more lobbying towards funding of this type of education -- also, more funding for local, state and_national conferences to enabl.e ex--patients, consumers,' etc. to become familiar with each other and the issues.

Question #7 asked for feedback from persops attending the conference on how it could be improved,

*11Couldn t t be better; perfect. II

*"Hard to beat, went as smoothly as expected in preparing for the unexpected."

*"More free time" *~Time •:to ... medinate" *"More social events"

These recommendations came from many people.

In their planning, the conference committee wanted Alternatives '85 to be a working conference, Since it was our first opportunity for a

SUMMARY OF EVALUATIONS Page 27

national meeting (and we were not sure that it would not be the only one), we tried to mainly focus on two topics:

(1) Oetting a natipnal 9rganizati~m started (2) Helpi_ng support and establish more ex-patient controlled alter­

natives. ·

After receiving information from others we realized there were a broad range 9f topics to be covered. With only a limited amount of time and .money we tried our best to broaden the ar.eas of discussion to include a variety of concerns. We felt free time, rest and social events could be planned independeptly before or after the conference; Considering the large number of people requesting more free time, it seems clear their request should be taken into consideration in planning future conferences.

The next item recommended was a lifeguard. In On Our Own's defense, we had three full time and two part time employees planning the entire con­ference; a schedule and agenda, transportation, housing and meals for 400 people, A lifeguard was not a high priority. Apparently some participants disagre~d. We would re~ommend future planning at this site include a life­guard. and that people who are lifeguards a.ttending conferences with these facilities in the future bring their Red Cross certificate and share monitoring of the pool.

Other suggestions were made for more social and recreational events, sports, and "fun."

Next, there were requests for shorter .wor~shops with more noted speakers, different moderators and a· wider variety of speakers;

A further criticism was that there were too many "power plays" and too much infighting/bickering. Recommendations came for -less devisiveness, ego struggles and disruptions, with more· people invoHzed. The use of profanity was also criticized, One commented that there was ''a B.S. group controlling the chair, dominating the mike" and that "they should be put out of power."

Also suggested were more topics, open mikes, the opportunity to see the surrounding community and to use the "real Notre Dame •. " (E,N.: I suppose that means Indiana. . Would have been a problem logistically since On Wr Own is in Baltimore.) Several suggested that the confer~nce could have'been longer -- ·_:perhaps a week; one suggested six months. More literature and hotel location were also mentioned. {E.N.: Could not afford a hotel.) Issues attendees wanted addressed further were; real life issues, halfway houses, closing state hospitals, ~empowerment stigma, freedom of choice, insurance and .the right to refuse treatment. (E.N.: The conference included some of these topics.) Final1y:1came a suggestion, "Have more girls."· Ot.N.: · Girls?· We are women.)

Ques ticm:. /18 asked for suggestions . for future conference topics.·

Many of these suggestions were already covered in the precetling question. In addition, listed for topics to cover were broadening the areas of interest

SUMMARY OF EVALUATIONS ·-

with more presenters; finding M,D.s who would not be biased; organizing self­help at an institution; a hospital director ·as a speaker; problems when

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leaving an institution; a speaker who is ·a· public figure such as Thomas Szasz; more social clubs, better advocacy drop-in centers; and political suggestions for a future topic, along with :(:ina11cial aid, welfare; labels; SSI: under-. standing kitchen, nursing;i and 'security staff like at Alternatives '85; ·more on new organizations; medicati-ons; ·incorp_oration; r,and suicide (hope they meant suicide preventiqn); a synopsis of an workshops avaiJ/,able to all participants; topics; vocational oppo'l:itunities; special needs of handicapped; jobs; employ­·ment; women, men, gay and lesbian ex-patient rights; deal:i.ngs withpprofessionals and fam~ly group~, arid that,_ lastly,~~ agenda be shared and compared with everyone in and around .the conference. ·

Let 01\io hold the conference, and Ohio in '86 complete these future topics so -- On to Ohio!

Question #9 welcomed other comments. Many used this opportunity to express their thanks to the conference planning committee, workshop leaders, On Our Own paid members arid volunteers·. To the On Our Own members who had to be put on the "back burner" because of the conference, thank· .you for your patience.

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*Hip, hip, hooray for- the brave ones that organized this. God bless you and· the. organization. .It will succeed.

*Many _thanks to those who o.rganized this conference and to' everyone who came.

*Looking forward to Ohio in '86. *Joe Rogers is great. *Thanks· again to _all those who worked so hard to make the conference possible. ·

*Keep up the good work. ·Thanks· to all of you who · labored so hard putting this all together. See you next year. .

*Thanks - you did a great job and it has·made a real difference. *I enjoyed myself' very rnuc,h. Baltimore is a very nice city. *Thank_ you for your time and consideration in the organizing of the

conference and for the grant for me to obtain-(transportation and meals). May God bless you all in your great work for self-help organizations. Thank you.

*I believe some of the organizers of this conference may feel a.little (burnout) but·don't feel it has all been not worth your·trouble or energies I personally am thankful that there are people like·you' in the 'world who can organize and present an occasion for an individual such' as myself to learn, participate and grow.

*Very worthwhile event. Thank you, On Our Own, College of Notre Dame, and others in the organizing group.

*This conference was different from others I have been to. Perhaps the fact that we discussed the formation of·a national organization brought about a high sense of dedi_cation, sincerity, . yes, even love on the part of the delegates. One comes away with .a feeling of mission.

*You people did a really super organizational job. Thanks. *Super conference, organization, structure, informative, participatory,

not too radical nor too conservative, thought provoking and stimulating. Well done. Praise deserved by all who did this work - it was to me a real success and, "thank you."

SUMMARY OF EVALUATIONS Page 28

*The organizers of the conference are to be congratulated for an excellent job.

*Good work. The organizers should take a well deserved vacation. (E,N.: Thanks! We did.) .

*Thanks for the opportunity to.meet my own kind. *I've been to dozens· of English literature, sc_ience fiction, law and ·

N. 0, W. meetings and this· is one of _the best. Congratulations. The trouble might have been unavoidable when any group of real people with real goals get together. Good to ·have open mike, drop-in center, 9et smoker~ to pick up their butts.. Notre Dame must think the mentally disabled are s.idppy. I think_~; ... Dennis, .,.iand Rae did magnificently under very difficult circums,tances. Thank you ....

*Great job. *I love Peg a_nd Mike and Laurel- b.ecause they are so good and had such a great conference.

*I thank Peg, Mike ·and others who made it possible for me to be here. You offered me a full scholarship - Thank you~

*This conference was quite enlightening. *I really enjoyed myself. *Thank you a_ll (Peg and Mike especially) for a Wonderful, Educational, - ' -Experience. .WEE I .I . *Need a newsletter to send out after the conference, group therapy,

sharing seminars. *Cliques don't click. *Cheery surrounding. *Peg and Mike and all you "On Our Own':' folks -- I think you did a terrific

job on the organization, especially with the details like the R.N. on duty, drop-in center; etc. Peg, you•' re even more compulsive than I am. None of the hassles that occurred could have been planned for or pre­vented in any way. The fadli,ties · were excellent; especially for the price (cheap I). y·ou ali deserve a joint :Nobel Peace Prize, simply for not killing a few folks... ·_At leas_t, take a week off . to recover. You deserve it -:- ·ancl much, much mor.e. We n'd,.ght consider two "tracks" at the next conference (?) - on~ for people with mo.re experience and knowledge, and one covering "the basics" for newcomers., I saw a lot of newcomers missing a lot. This is not mean to be "elitist" - just realistic. I'm a .tiny bit concerned that there were disproportionate numbers from some states with money, and that they sent people who can't/won't carry the message back ••• · and perhaps we missed some people who could have been more "useful" (awful word) in the long term. Don'thave any great ideas on how to resolve this,. but I'll think about it. Thank you! ··Thank you!