When the Mental Health Association of Portland says “the mental health community,” what are we talking about?

People with mental illness and addiction have been systematically excluded from public policy discussions relating to their civil and human rights by governments in Oregon, such as the City of Portland, and governmental agencies, such as the Portland Police Bureau.

Our position is decisions from those discussions about the welfare of persons with mental illness and addiction, made in behind closed doors or without equitable collaboration with those affected persons, are illegitimate and continue harm to persons with mental illness and addiction.

No interagency discussion of policies or legislative proposals which affect people with mental illness or addiction should be closed to the public or where public notice is not given and public meetings laws followed. The rosters of meetings should be public, as should agenda and minutes, for at least three years. Clinical discussions, where identifying health information might be openly discussed are not policy or legislative planning meetings. Conversely, policy or legislative planning meetings should never include identifying health information. People make mistakes, so it is incumbent on meeting facilitators to provide instruction sufficient so no identifying health information is included in meeting discussion or minutes.

You may have heard someone say, speak to one person with mental illness and addiction and you have spoken with one person. So how can we know what people with mental illness and addiction think?

Let’s start by learning the numbers

According to the Surgeon General’s Report of 2010, a widely applauded and agreed upon survey, 2.8% of America has a severe and persistent mental illness, such as schizophrenia, depression, anxiety disorder, or bipolar disorder. Another 10% have treatable personality disorders. Alcoholism and other drug addictions amount to 10%. All of these illnesses are lifelong and for some people are disabling. Some people – perhaps 5% of the whole – have a more than one problem. For a variety of reasons, it’s unlikely those numbers are going up or down significantly.

The population of Portland is 640,000, so the following is highly likely – Portland has 115,200 people with mental illness and addiction. This is “the mental health community.”

People with mental illness and addiction are the largest diagnostic group, and larger than any minority group in Oregon. Together they would make Oregon’s fourth largest city. The mental health community is not individuals with mental illness and addiction. It is not clinicians or social workers or ministry or healthcare administrators or politicians. It is all 115,200 persons with mental illness.

Because of a badly managed healthcare system, a far smaller number of those 115,200 persons are actively “in recovery” from their mental illness or addiction, where the person is actively working to manage their symptoms. A person’s civil and human rights are not ignored because a person is not “in recovery” so requiring symptom-less behavior is discrimination.

There is no spokesperson for the 115,200 people with mental illness or people with addiction. There is no organization which represents the political interests of any of those people effectively. There is no general agreement by those 115,200 people on any issue. No one has developed a method of asking these 115,200 Oregonians a question of any sort.

The lack of leadership is due to the lack of support from governments, healthcare providers, and from the philanthropic community. There is no inherent lack of ability to lead on the part of people with mental illness and addiction. We know state legislators, mayors, business and religious leaders, judges and doctors, military and law enforcement officers with mental illness and addiction. The lack of financial support to develop mental illness and addiction leadership is the cause.

Compounding the problem, people with mental illness and addiction are widely discriminated against by the healthcare system, by the law, by public education, in public housing, by the media, in films and television, and by employers. They are routinely poor, undereducated, undernourished, and under-housed. They typically die decades sooner than others. Those who can hide their illness for fear of ridicule and exile. The discrimination against people with mental illness and addiction is widely understood and agreed upon, has persisted for hundreds of years and occurs more or less all over the world.

So persons with mental illness and addiction are reasonably reluctant to expose themselves by participating in public policy discussions. They have a reasonable fear of reprisal and increased discrimination. Imagine fear of political engagement by an African American in a Southern state in 1920.

Yet some people with mental illness and addiction come forward again and again to voice their opinion in public policy discussion. Can these persons represent the whole?

We have two opinions about this.

First, no. That 10 or 20 people with mental illness and addiction in Portland speaking up over the past decade in public policy discussions do not statistically represent the 115,200. A somewhat accurate sampling size for this group might be in the range of 2,400 people. Second, over and over some of those persons have been claimed by community leaders as representing the whole. Tactics for this selecting of opinion has recently included holding “closed” meetings to formulate public policy and inviting persons with mental illness and addiction willing to participate. These tactics are patronizing and lead to policy which perpetuates discrimination. We suspect if any of the 10 or 20 were asked if they indeed represent the whole they would adamantly say no. Agencies which use this tactic are intentionally misleading the discussion often to defend harm caused to people with mental illness and addiction.

There are agencies which say they represent people with mental illness and addiction. Can these agencies represent the whole?

Some agencies have dues paying members – but we expect none with over 50 dues paying members who are also one of the 115,200. Some have staff which are among the 115,200 – but none over 50 persons – not statistically sufficient. None of these organization do systematic polling of the 115,200 or collect anecdotal information in a replicable way. None effectively carry information back from public policy discussions to their constituents who are among the 115,200. Further, several of these agencies are contractors with the same governmental agencies – or are seeking contracts from them – so their participation and testimony critical of those agencies is suspect. So, no. No agency represents people with mental illness and addiction as a whole.

In the past – say prior to 2010 – some mental health treatment agencies would intimate they represent the interests of persons with mental illness and addiction. They did not. They represented the interests of their organization or their professional guilds. Today, thought leaders who are mental illness treatment professionals will not offer to represent the interests of people with mental illness and addiction. More likely they will insist those persons represent themselves in all circumstances. Still sometimes mental illness professionals with public relations problems will perpetuate this misrepresentation to diminish critical incidents or deny they provide inadequate services. They should be ignored and usually are.

Can the whole of the 115,200 be represented in public policy discussions?

There are two categories of governmental agencies which benefit from the participation of people with mental illness and addiction in public policy discussions. The first are agencies which have been designated by governments to routinely harm people with mental illness and addiction, such as law enforcement, local courts, jails and prisons, public housing, state psychiatric hospitals, and community mental health agencies (which are government contractors). By vigorously pursuing ignorance about the experience of mental illness and addiction, these agencies have estranged millions from care, injured or killed thousands, and diminished the lives not only of people with mental illness and addiction, but also their friends, families, neighbors and caregivers.

These agencies can develop trust and credibility with people with mental illness and addiction but need to pursue engagement from the top down, over a long duration, and hire skilled persons with mental illness and addiction to facilitate the process. Tactics to communicate effectively with the 115,200 can be developed but agencies must be willing to make fundamental changes to be successful.

But our experience has been agencies of the first category see harming people with mental illness and addiction as their primary purpose, and see the harm as beneficial to their idealization of the community’s interest and desire. We encourage those agencies to pursue change, but don’t expect the fundamental changes to occur. Most government’s consider any public criticism about harm to people with mental illness and addiction a result of being misunderstood. They try over and over to explain their purpose, and end change tactics before change is becomes permanent.

We can recognize a sincere and lasting change process has begun when some form of restorative justice begins. In South Africa after apartheid, a process now known as truth and reconciliation was developed to move past punishment and govern the nation. Perpetrators of apartheid were invited to appear before a tribunal and tell the truth of what they had done. The tribunal, and in affect the community, would the decide to accept or not accept that truth as told. Once truth was agreed upon, reconciliation could begin – and not before. Our suggestion would be to use the restorative justice process called “ambiguous loss” designed by Dr. Pauline Boss and used by the International Red Cross.

Agencies not designated by governments to harm people with mental illness and addiction can benefit from participation of people with mental illness and addiction by developing and implementing accommodations to invite and support participation. See our recommendations for including persons with mental illness in public policy discussions.