An unsustainable program (by Guest blogger Pat Capponi)

It seems simple, and I can understand the frustration as the numbers continue to rise and few people labelled mentally ill appear willing to take the steps necessary to leave the ODSP rolls.  Without knowing this community, their history and their struggles, that frustration will continue.

My experience is with those who are labelled seriously mentally ill, with schizophrenia, manic depression, and PTSD,  as well as those with long term addictions to drugs like crack cocaine. In this group, poverty is the norm, days are spent in drop-ins or waiting in packed agencies for assistance that never seems timely or appropriate.

These aren’t people who can hide the toll taken on their bodies, spirits, minds and hopes by years of exclusion, dependence, and ‘otherness’.  They are carrying with them some of the most debilitating features of institutionalization, begun in the hospitals they found themselves in and continued in the community and the agencies responsible for their care.

The tale of community mental health, supportive housing and drop-ins is one of missed opportunities, and failure to recognize and tap the human potential all around them,  Why does this matter?

People have had mirrored back to them their inability, vulnerability, and incapacity in almost all areas of their existence.  The worst aspects of hospitalization, the lack of personal control over the simplest activity, from bathing to meal preparation to socialization, the inability to affect the rules and regulations governing them, the overly narrow lens used to define who they are and what they are capable of, the refusal to recognize and address the impact of poverty, isolation and the social determinants of health ensure a broken population will remain that way.

People who suffer from an excess of powerlessness cannot imagine a self-directed life.

It is not the same as feeling unwell, seeing a doctor and coming away with a diagnosis of diabetes, along with a roadmap for how to cope and integrate the illness in a productive life.  For the SMI population, a label of  schizophrenia or mood disorder feels like an ending to their story, they watch as friends drop away, their status in their families radically changes, and they feel as though they are permanently blocked from achieving the goals and dreams they’ve held since childhood.

Undoubtedly, their experiences in school and their attempts at work have been dreadful,    and scarring.  The general public does not do well with difference, especially since stereotypes of the mentally ill emphasize potential violence and bizarre behaviors.

For the individual who may have endured frightening episodes of psychosis, being constantly warned rather than supported in what is viewed as risk-taking, such as returning to school or taking up work, ensures the person is kept dependent, pensioned off and discouraged from achieving.

As a community, then, one which struggles to be seen and heard for all they are, we are learning that empowerment, engagement, and continuous learning are critical to growth.   Without the ability to affect the programs that govern them, see themselves reflected on staff and boards, they have no sense of their own value as active participants in recovery.  Rather than being a safe place to experiment with autonomy and involvement, voices are silenced and stilled.

Even those who purport to fight for our needs fail to understand the long-buried dreams of this population,  charities ask only for an extra food allotment, services

declare more of the same are needed, we don’t hear a whisper about the need to require better outcomes, to re-direct agencies away from simply controlling their clients to making them true partners, hiring role models to challenge negative assumptions held by staff and clients, and profiling their successes.

We have made significant strides in the SMI community, with social enterprises, with leadership development, we are speaking for ourselves to government, to police,and to CAMH, where we are helping to educate residents and working to improve the chronic care curriculum.  The only sector that stubbornly persists in excluding our voices or relegating us to advisory roles is community mental health, where power is jealously guarded and kept out of our hands.  Both the Human Rights and the Mental Health

Commission have related how prejudice and discrimination is firmly seated In our helpers, this must be righted.

We are the government’s natural ally in this fight.  We are tired of the stress of living impoverished lives, tired  of being surrounded by well-meaning nay-sayers. Without  substantial change in the attitudes of our helpers, without making room for us as equal participants, the numbers on ODSP will continue to rise,  and much potential will never be realized,

Pat Capponi

January 28, 2013