AF: We are going to have to cut those lines from your play about people being in institutions.
DT: Why?
AF: We don’t have them here in New Zealand.
— Adam Fresco, Director of the Rethink Theatre Challenge to me, October 7th, 2010
Last month I traveled to New Zealand because a one-act play I’d written won an international playwriting contest. The contest, sponsored by Mind and Body Consultants, was funded by their annual RETHiNK Grant and was part of the national “Like Minds, Like Mine” campaign, a publicly funded program aimed at reducing the stigma and discrimination associated with mental illness.
Ten one-acts were chosen to be performed on World Mental Health Day, October 10th (10 plays, 10 minutes, on the 10th day of the 10th month 2010.) The contest drew entries from around the world, with winners from New Zealand, China, England, Scotland and the United States. Each play had to reflect an aspect of mental health that reflected reducing stigma or discrimination.
Taimi Allan, an actress and mental health advocate leads Mind and Body’s Like Minds, Like Mine team. Allan was deeply involved in every level of the production and said that “without a doubt, this was the most exciting project I have ever been a part of. It mixed my two passions in life, performance and the promotion of mental health, and furthermore I believe it sets the benchmark for projects that seek radical social change.”
She was right.
It does set the benchmark for “radical social change.” Using theater and the media to bring about a change in thinking about mental illness is what Allan was talking about for New Zealand, but it may also be exactly what we need in the United States.
I was prepared to have a new experience. I wasn’t prepared for an island nation with such a warm, accepting, open attitude toward mental illness and the promotion of wellbeing. After 30 years in the mental health field in the United States, and after having traveled to other countries with socialized medicine, I was expecting to encounter something relatively familiar. But I was in for a culture shock — a good one. To give you a taste of the attitude I am talking about here is the mission statement from the New Zealand Mental Health Foundation.
The Mental Health Foundation of New Zealand works towards creating a society free from discrimination, where all people enjoy positive mental health and wellbeing. Our work seeks to influence individuals, whanau, organisations and communities to improve and sustain their mental health and reach their full potential.
(For those of you unfamiliar, “whanau” is a MÄori word meaning “extended family.”)
So what is the United States policy on mental health? Hmmm. Try Googling it and watch what happens. You can’t find something pithy, clear and direct, because our culture doesn’t approach the issue in a pithy, clear, direct manner. It seems that even the simple things get sidetracked here. My play, Sticks, Stones and the R Word, focused on the recently passed federal legislation (Rosa’s Law) replacing the term “mentally retarded” with “intellectually disabled.” It also supported deinstitutionalization, moving people with intellectual disabilities into the community — on the surface, an easy and humane action. Don’t call people names — help them live better lives.
But as I did research for the play and the article it was based on, I was astonished to find this simple, obvious shift to stop namecalling was vehemently blogged about by many individuals — not just a random one or two — who took a hard, negative, critical stance. For the purpose of illustration let me pluck some from the CNN Health blog after the law was passed:
- “Retarded people are retarded. Deal with it.”
- “The mean kids will think of some other innovative insult for retarded people…”
- “Realistically, political correctness is ridiculous. We need to stop changing language because people are getting offended. I HIGHLY doubt that any mentally retarded individual has ever been offended by someone using the word ….”
- “The Retards in congress felt they should remove that word to stop people from calling them it.”
- “In my wife’s school, there is a violent 5 year old who is injuring students and teachers. I don’t care what issues this child has, I have no problem referring to him as retarded.”
- “How does a retarded person know they been offended?”
- “While we’re at it, why not make every single parking space in America a handicapped-only space?”
- “… how does a retard know what the word intellectual means anyways. ? lol”
- “USA…home of the offended.”
The amazing thing to me was how overwhelmingly negative the reaction was to this change. About 90 percent of the comments were similarly aligned with the above. We have enough information about bullying and name calling and statistics to show that if we don’t stop the initial dehumanization of an individual through name calling, it turns into something more hurtful. But, thank goodness, here is one to represent the other 10 percent.
“Those with challenges are the last citizens to have equal civil rights in this country. Often they are still presented with the concept of separate but equal which is not equal in any sense of the word. In my years of work with those with cognitive disabilities I have found one important thing. Those who we label as disabled are the most open to others of different race, religions, education, places of origination and beliefs. They treat others as equals. It is about time we did the same for them.”
Other popular sites had similar percentages. What was clear in New Zealand was the campaign to end this kind of stigma was deeply embedded in the media, which means it was deeply embedded in the culture. While there I saw TV commercials making the point of supporting the disabled, and news articles supporting the reduction of stigma. By every account these efforts were working.
The turning point in New Zealand was the closing of Tokanui Hospital in 1998, toward the end of their deinstitutionalization process. It led to the establishment of funds for community placement Pathways, and the Waikato Community Living Trust. But it was also a call for the media to be more involved with social change and deinstitutionalization. The country still has acute inpatient and forensic units, but the large institutions for housing the mentally ill and intellectually disabled are gone. That same year researchers Joseph and Kearns (1998) wrote: “It is notable that the media coverage that provides the backbone of our narrative about deinstitutionalization in the Waikato selectively depersonalizes people with mental health problems.”
These researchers called for the media to change their approach and attitude and cast the mentally ill differently than they had been. The media at that time had cast people with mental illness as criminals and misfits. In their summary these researchers “… conclude that the media in New Zealand have a role that extends beyond simply reporting on events. Indeed, the media act as a reflexive conduit; journalists interpret issues and through their ‘stories’ help to shape the course of events.”
The media has been at the core of changes in the U.S. as well. Geraldo Rivera, a reporter for Channel 7 News in New York City in 1972, took films of the conditions inside Willowbrook State School. Abuse and mistreatment of patients had gone on for years until these films were aired. The atrocities at Willowbrook — at the time the largest institution in the USA for housing the intellectually impaired — led to a landmark lawsuit. The resulting Willowbrook Consent Decree, promulgated in 1975, marks the turning point in the delivery of services for people with intellectual disabilities. Because the atrocities uncovered were so egregious the Willowbrook Consent Decree became a major contributing factor to the passage of the Civil Rights of Institutionalized Persons Act of 1980.
But there were problems here in the United States. Community mental health centers where people from the institutions would have gone were ill-funded and fragmented concerning their responsibilities. Many centers were overburdened, and the distribution of federal funds was influenced by competing interests. The result? Deinstitutionalization in America led directly to a surge in homelessness. Estimates vary, but it is thought that between 30 to 50 percent of homeless people are mentally ill. People have moved out of the institutions onto the streets.
While New Zealand certainly has their problems with the delivery of mental health services, they have little homelessness and a much better attitude toward the treatment of people with mental illness. Theirs is a pervasive attitude of well-being for each person and a society that supports mental health and people reaching their full potential. Their attitude determines the outcome.
Like Minds, Like Mine conducted research in 2005 to find the most effective way to change public attitudes around mental illness, and found the following was the most effective:
Personal contact with people with experience of mental illness is the most effective strategy to counter stigma and discrimination, provided the following conditions are met:
- the person with experience of mental illness has equal status,
- there is an opportunity for people to interact and get to know each other,
- information or evidence that challenges stereotypes is provided,
- and there is active co-operation and pursuit of a mutual goal.
In contrast to the negative blogging excerpts earlier, please take a moment to watch this 30-second TV commercial from New Zealand concerning people with intellectual disabilities. It typifies their approach. To quote Taimi Allan again: “as long as someone is labeled as different from ourselves, we will always see them as not having the same needs, desires, goals or respect as we demand ourselves.”
Can America change the stigma toward mental health and well-being? We are trying. Here is a YouTube video by the organization BringChange2Mind, created by actress Glenn Close, the Child and Adolescent Bipolar Foundation (CABF), Fountain House, and Garen and Shari Staglin of IMHRO (International Mental Health Research Organization).
If you want to get involved — these are the people to support.
And to the random blogger who doubted someone with an intellectual disability would know he or she was offended — – here is something that might surprise you.
I would like to end with a greeting I heard thousands of times last month. “Kia ora” comes from the MÄori language (New Zealand English) and it means “be well” or “be healthy.”
And they mean everyone.
(Special thanks to Taimi Allan for her input and suggestions in this article.)
7 comments
Really interesting – may be wrong but one of the issues the US faces is that mental health is provided for through private organisations and institutions who have a vested interest in keeping people dependent and needy.
Whereas in NZ, community groups, supported through state money and a relatively secure social welfare programme (except for the continuous assault we suffer from the National Party, currently in power), means that there are few people on the street.
Lovely to see you here anyway. Best
I am an American living and working in NZ. NZ still has its issues with the acceptance of mental health issues – especially in the workplace. I can only imagine the more difficult issues in the States according to the article above. For example: my workplace has a very good disability policy for physical disabilities but there is not a clearly written policy for employees with mental illnesses. There are “bits and pieces” (a direct quote from the Disabilities Coordinator) but there is nothing clearly written for mental illness. It’s up to the discretion of the department head to “manage”. This means it relies on his/her understanding and/or compassion toward working with the individual. We all still have a long way to go. Thanks for the article and moving us one step closer to exposing these problems.
Great work Dan!
kia ora Dan , it was great to meet and work with you in NZ. I’d like to acknowledge you for your willingness to dive in and be a fully involved, from the first moment you arrived at rehearsals to the final show. What Dan hasn’t revealed was that due to non-arrival of an actor at two shows we press ganged him to being on stage !! He did a great job. Best wishes from the top of the world, keep up the great work. Cheers
NZ may be further down the path than the US but we still have a long way to go. People do still live on the streets or in half way housing because they have been kicked out of the supported accommodation due to anti-social personality issues or drug & alcohol abuse and there is no where else for them to go. The prisons here also have large numbers of people with mental health issues. Though yes, for the most part supported accommodation works really well.
I saw a beautiful NZ movie the other week that although based on a novel, highlights some of the issues and attitudes that still exist in NZ society around deinstitutionalization.
The Insatiable Moon is doing the film festival circuit at present and I highly recommend it.
You can watch the trailer here on their website:
http://www.theinsatiablemoon.com/
Reading this made me wonder if there was another “New Zealand” out there. Yes, we have de-institutionalised our mental health services; and we have adverts which run every now and again. But have you ever been on a psychiatric ward which is based on catchment area, rather than disorder? You get a mix from alcoholics, trauma survivors, psychotics etc. This is a triggering mix for nearly all patients.
I’m a survivor of abuse, and while I was waiting for a psychiatrist to assess me, a man masturbated outside the window while looking at me. I was left in the room for over five hours with no checks. This is not good quality care.
Meanwhile, I am subjected to jokes about people who “obviously haven’t taken their drugs today” at work. This means that I have not disclosed my mental health issues to anyone at work, and I feel stigmatised each time the jokes come out.
I know there are people doing good work in New Zealand Mental Health, and we’ve come a long way… but this article paints a picture of acceptance which I don’t see in my daily life.
It’s interesting talking to someone who is currently in an American psychiatric ward and comparing experiences. He has access to medication; I have trouble accessing basic medication (my GP refuses to prescribe some meds and the DHB tell me to find a GP who will). He has access to therapy in-patient; I experienced an unsafe, overcrowded holding tank environment.
I’m glad you saw the positives Daniel; but as a consumer, I’ve yet to get the sort of acceptance or care you describe.
Kind regards,
CG
Deinstitutionalization is difficult to get done because it requires not just changing the status quo, but doing so in a way which might diminish someone’s profits.
In general, additional freedom for a group will mean less exploitation, and that’s against the interests of whoever does the exploiting.
For example, in the United States you might consider two sources of vested financial interests against this change.
First, the current state of disability law in the United States has various mechanisms for allowing employers to pay disabled employees less, even pennies on the dollar. That also encompasses a broad range of disabilities which put people in a position where if they make more money than the law would like, they lose the money the government would otherwise give them; the same goes for considerations regarding marriages, and taxes, and other matters.
Second, the various institutions which people would be leaving can be privately owned. In that case, if the institution is emptied, so too is the pocketbook of whoever was previously profiting from their obligatory occupants. This also applies to institutions housing elderly people, such as that of an infamous case of somewhat recent vintage in Arkansas, involving fraud, abuse, negligence, and corrupt State Legislators found guilty by an ethics commission facing disturbingly small penalties.
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