Representatives of Interrelate who attended
the IIMHL Conference in Killarney, Ireland.
Front: Loan Edwards Karmazyn (Canada), Anne Beales (England), Lauren Spiro (US). Back: Shawn O’Neill (Scotland), Jenny Speed (Australia), and Dan Fisher.
TRIP HIGHLIGHTS – Iceland, Ireland, England – May 13 – 24/2010
I had met Auður Axelsdóttir of Iceland 4 years ago in Denmark. She had given me her card and asked me to visit Iceland to build on info Judi Chamberlin had brought them seven years ago. So when I knew I was going to Ireland in May, I contacted Auður and she set up a busy two‐day schedule for me in Iceland. This was all set up long before the volcano erupted on Iceland, sending all travel into chaos. But they and I were determined.
Despite volcanic ash, a detour to the Northwest area of the island, and an extra 5‐hour bus ride, I arrived in Reykjavík in time to meet policymakers from throughout the Nordic countries. I shared the ways consumers/survivors (c/s) are involved in policy in US. The policy analyst, Héðinn Unnsteinsson, has worked to get recovery into Icelandic policy and has wanted to be connected to NEC. Then I was taken on a stunning tour of natural wonders of Iceland by Steindór, Hrannar, and Eríkur. The scenery and company was outstanding. I was particularly moved by the site where the chiefs of Iceland met annually. This was one of the first examples of democracy. Next day I met with 20 members of the c/s‐run group, Mind Power. Their stories of gaining meaning from the group, from giving, from the examples of each small victory reminded me of our shared humanity. The issues are universal because at our deepest level we share the really big issues such as: What makes life worth living? How do we find love? I was presented with a magnificent hand knitted Icelandic sweater, which I will cherish always.
Later, gave a talk and engaged a varied audience of 160 in dialogue. I was glad the Minister of Health, Álfheiður Ingadóttir and prime minister’s wife attended. They asked familiar questions, but in a new country I felt compelled to think more deeply. When asked if there was a genetic basis to mental illness, I contended no, but we are diverse. Some of our ways of being diverse fit the cultural norms, and are rewarded, others are criticized. An example is being left‐handed. In a society expecting everyone to be right‐handed, is being left-handed an illness or a valued variation?
There was a strong interest in alternatives to hospitalization as many had negative experiences in inpatient units.
As I left Iceland, we flew around the volcano whose plum of steam reached well above all clouds keeping us well to the North. Changing planes in London, I just managed to get the last plane to Dublin before the ash closed in.
My reason for traveling to Ireland was to attend the International Mental Health Leadership (IIMHL) Conference. The IIMHL is a network of leaders from all sectors of MH system of 7 countries, which meet in a different country every 15months. I also wanted to connect face-to-face with other members of Interrelate, an international coalition of mental health service users started at the IIMHL conference in Canada, in Aug. 2007. I met with several of the reps from Interrelate shared dinner.
The next morning, 13 c/s reps from 7 countries met at Dublin Castle to exchange ideas, hopes and frustrations. Paddy McGowan, a long‐time Irish advocate, set up our meeting in Dublin Castle where the top administrators also met. He wanted us to connect with the administrators at the breaks. During one break an administrator asked me in a wellmeaning manner if there was any way they could help us establish leadership. I said that in fact NEC has developed a leadership program called Finding Our Voice. To this he replied that was nice, but wasn’t there a program they could teach that would give us real leadership skills. This vignette illustrated the gap created by stigma. The well‐meaning administrator could have asked to learn more about our own leadership program, but instead assumed it would not be a real leadership program (perhaps because we had developed it ourselves.) I was left feeling I was treated paternalistically. We discussed this issue as a group and others too felt they were often treated paternalistically. We all feel that we have as much to offer as to learn. In fact we realize that the form of leadership our movement most admires and responds to is a much more reciprocally‐based collaborative for of leadership. For in order to lead a transformation to a recovery /self‐determination based system, we, as leaders need to be the change we propose. That night we had the first of several social occasions our Irish hosts held. In many ways these social occasions were the highlight of the conference. They offered an informal way to mingle and share with all levels of leaders, careers, users, and providers. I was particularly impressed by the Irish Director of Disability and Mental Health, Bairbre Nic Aongusa who related in a very respectful manner with users and carers. She has been a strong advocate for the user involvement in Ireland.
The next day, May 18, 2010, thirteen members of Interrelate, visited the Central Mental Hospital of Dublin (which Anne Beales said sounded like sentimental hospital), the only forensic mental hospital in the Republic of Ireland. We heard that the largest number of residents (40% of 99) were persons found not guilty by reason of insanity. Their average length of stay is 12 years. .Well, I did not look forward to it, and it certainly is not sentimental. However, the visit turned out to be a highlight of the conference. Out of this highly locked, very lengthy stay hospital, there was a very impressive resident council. Peter, Paul and Peter engaged with our international group of c/s leaders in a thoughtful, attentive fashion. We asked them to share with us their recommendations. They could have personalized their situation and understandably said, “We want to be discharged.” Instead they made their request in the form of a policy recommendation. They asked us to advocate for conditional discharge, which would enable not only them to be released earlier but other residents as well. Their requests were as follows:
Requests by the Resident’s Forum at Central Mental Hospital
- Foremost, that the government should develop policy to enable conditional discharge from Central Mental Hospital to enable the discharge of residents who are ready to live in the community. (I would caution the government to word the policy carefully to be flexible and individualized in the application of such a policy, to ensure it is not universally applied but is reserved for those persons whose potential behavior may be considered of high risk).
- Step down unit for women. (presently there is only one high security unit at the hospital for women which means women are excluded from less secure area activities, including much of the work in the garden.) Of the 99 residents, 91 are men and the other 8 are women. Men are admitted to the most restrictive environment, and are progressively moved to areas with less and less restriction, until eventually they are able to go on day release, undertake external study and other activities that will help them make a smooth transition from the hospital to the community. Women are admitted to the most restrictive environment, where they stay throughout their time at the hospital.
- A subsidy for transportation for family members to and from the hospital. (many of the residents come from distant parts of Ireland and have limited income. In England there is a transportation subsidy for relatives visiting residents in their forensic hospitals.)
- Transfer of residents from the least secure unit, #7, to regional mental hospitals. (in the US the state mental hospitals manage less severe forensic situation such NGI and aid in sentencing.)
- Enable the residents who produce vegetables in the hospital garden to sell the produce to the hospital, by becoming a qualified supplier. (Presently the residents cannot supply their own kitchen with the vegetables they produce because they are not qualified suppliers).
- Display the clients’ art on a regular basis in a public exhibition and sell the paintings as done in Cork. (We saw a remarkable collection of resident art, and especially one with a person in a white coat peering into the mind of a resident and the resident peering into the mind of the clinician. The clinician sees a dagger and the resident sees a garden in the mind of the doctor.)
That night at the open house at the castle I read these requests to Bairbre Nic Aogusin, Director of Disability and Mental Health, and Dr. Harry Kennedy, Medical Director of the Central Mental Hospital. They took them seriously and said they would look into them. I think Interrelate should keep pushing these ministers to ensure they do act on them.
The next day the Interrelate participants (including Lauren Spiro) traveled to Killarney, a quaint village in southern part of ROI. During the train ride, the Interrelate management committee amended the mission to include protection of rights and added a new membership category, associate member. That night there was another open house. A highlight among the addresses was by John McCarthy, a member of Mind Freedom. He spoke out forcefully against the practice of forced ECT. Not all the delegates were supportive, but all treated him with respect.
On the second day of the conference there were some excellent talks. One was by Anne Beales, a representative of the National Survivor User Network of England (NSUN) on the topic of Interrelate. This was a first. It was the first time a rep of Interrelate was able to speak to the entire audience. She pointed out that Interrelate, and many of its member organizations, have evolved a new style of leadership. The old style, hierarchical leadership, does not work for consumer/users. In its place we have been discovering the need to have leaders who genuinely feel we are all equal as human beings. This new style of leadership is called servant or participatory leadership.
An advocate for the deaf community, Michael Schwartz, from New York, spoke movingly through an interpreter. He said that until he was a teenager he did not realize he was deaf. He was mainstreamed and learned to read lips and speak. Many times he would not understand what people were saying, but he learned to nod in a knowing manner, acting as if he understood. He felt a hole in his soul. Then he learned of and joined the deaf community. As a result he felt the hole in his soul fill up, by the sense of belonging to a community.
A parent of a young man with schizophrenia spoke of the need for a paradigm shift in how we view and assist persons with long term mental health issues. He asked the question, “why is it so difficult to institute change by implementing the recovery model?” He suggests we have an “Implementation Deficit Disorder.” The disorder is characterized by denial and rationalization in face of a call for reform. The system is maintained by senior managers who advance by being compliant. We need managers who are willing to challenge the tribe. He drew a picture of an organization as an iceberg, with the visible part above water, consisting of policies, structures and core processes. This is the area of technical change. The larger area of an organization, however is that below the water, the invisible area of culture change. This is the area of values, beliefs, attitudes, identity and mindset. Change above the line is through changes in design, such as instituting evidence based practices, while change below the line is carried out through dialogue. The area above the line can be documented while that below is taboo. Albert Einstein said, ” Not everything you can count, counts, and not everything that counts can be counted.”
He suggested reading Thomas Kuhn’s book on paradigm shifts. Paradigm, an inherited view shared by the professional community. Has its own language, value system, and is carried in textbooks and training. They are tenacious. Anomaly is an observation that cannot be explained by the existing paradigm. The shift will require a revolution in education, research and economics as profound as Galileo’s.
The following day John McCarthy sponsored a mad Pride celebration. Several hundred people attended, most of whom were not labeled mentally ill. Of course at the entrance were two clowns who tested each person to see if they were normal. Of course most people were found to be not normal. There was excellent music. One of the songs had a lyric, “doctors are watching you from afar.” There was excellent food and hand made jewelry. There was also an area for constructing your own life‐sized puppet. I made one of a hippy psychiatrist.
That afternoon I flew to London and shared breakfast with my daughter the next morning. I was on my way to Nottingham, which beckoned me there in November 2009. I had given a lecture in London in November. When the talk was over, three fervent members of the audience reminded me that I had spoken in Nottingham three years before. They said they had asked me then, “How do you start a self help group.” Apparently I gave them the simple instruction, ” just get 3 to 4 passionate people together and start sharing on a regular basis. They said they had followed my advice and now have a vibrant self‐help group. They wondered when I could return. I casually mentioned I would be in Ireland in May, and before I knew it the Road to Recovery had set up a conference for me in May. On May 24, 2010, I addressed an audience of 150 representatives of all stakeholder groups who collaborate very well. They wanted to learn more about how we carry out peer support and were especially interested in the idea of a peer‐run crisis respite. The group carried off an excellent full‐day conference, in which several consumers played an important role. England remains cautious about peer support, as they are a more traditional society. Also it is harder for consumers to impact policies at a national level, as they have little access to Parliament or the major administrators.