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Dignity of Risk: The right to self-governance for people with mental illness

Craig.Parsons's picture

Dignity of risk is a term used to describe the right of individuals to choose to take some risk in engaging in life experiences. Craig Parsons says it is important that people with mental illnesses are not overprotected.

The dignity of risk, or the right to failure, is a value first championed by advocates for people with physical disabilities.

The dignity of risk, or the right to failure, is a value first championed by advocates for people with physical disabilities. It's an important concept for people living with a mental illness and one that mental health service providers should be mindful of.

Following diagnosis with a mental illness many people feel subject to a double standard in attitudes towards their ability for self-determination. In the process of receiving treatment they seem to have somehow given up their "right" to make risky or potentially self-defeating choices without intervention from authorities, clinicians, service providers or even family members wishing to protect them.

Every endeavour has an element of risk, and every opportunity for growth carries with it the potential for failure. All people learn through a process of trial and error; often learning as much from their mistakes as from their successes.

When people living with a mental illness are denied the dignity of risk, they are being denied the opportunity to learn and recover.

The dignity of risk is an important concept. It places an emphasis on personal choice and self determination - two concepts that are central to recovery.  

Anthony (2000) states: "the notion that one has options from which to choose is often more important than the particular option one initially selects.

Pat Deegan (1996): Self-determination, or taking responsibility for one's own recovery, is the core component of recovery. Part of that responsibility involves the self-management of wellness and medication, autonomy in one's life choices and the willingness to take informed and planned risks in order to grow.

Given that the dignity of risk can be understood as a human rights issue and that its presence is closely associated with recovery, what keeps us from encouraging people to make choices? What stops us from allowing people living with a mental illness the dignity of risk?

One of the biggest barriers is fear: of the unknown, of the legal ramifications, of failure. Mental health service providers worry that if a consumer takes a risk and fails that it implies they are doing a bad job. We need to encourage staff to see the positives in risk, the positives that can come out of failure and allow consumers to internalise the locus of control for their choices and actions. Failure, far from being a dirty word, can be used as a learning opportunity. Supporting people through failure can assist them to develop resilience.

Systems are another barrier to the dignity of risk. Methods of operating should be reviewed to determine whether they service the organisation's goals as opposed to the consumers'. One of the ways to combat this is to promote consumer advocacy within organisations and to ensure that there is consumer presence on boards of management.

Time is another. In practical terms it is simply quicker and easier for decisions to be made for mental health consumers than it is for their service providers to collaborate and plan with them.  

Finally, environments are a barrier to the dignity of risk. When consumers are in institutions, hospitals or group homes, often their capacity for choice is severely limited. Choices as simple as when to get up, what you're going to eat or who you are going to spend your time with are taken away. We need to ensure that appropriate accommodation and support exists in the community so that people living with a mental illness can exercise their right to make choices, take risks, participate in and potentially thrive in the sometimes scary and unknown outside world.

Hope is central to recovery. Every choice involves both the possibility of failure or success. Over-protectiveness, taking away people's choices, not allowing them to take risks or try new things crushes hope. This can be seen in many people who have been institutionalised or hospitalised for any great length of time. It can also lead to learned helplessness, which is often more debilitating and disabling than any illness itself (Petersen, Maier & Seligman, 1995). By supporting dignity of risk and encouraging people to make choices and take chances, service providers help to combat learned helplessness and bolster self-esteem, self-respect, empowerment, hope and support recovery.

 

This blog is adapted from a presentation I made as a representive of Neami at TheMHS Conference 2008. Neami is a national psychosocial health and rehabilitation support provider, who works with and on behalf of people living with a mental illness.  Neami works to identify service gaps in the community, develop new services and to achieve community acceptance, protection and expression of the rights of people with psychiatric disabilities in the community. For more information please visit www.neami.org.au

List of References:

Perske, R. (1973). Hope for the families - New directions for parents of persons with retardation or other disabilities. Nashville. Abingdon Press. p 51.

Anthony, W. (2000). A Recovery oriented service system: Setting some system level standards. Psychiatric Rehabilitation Journal, 24(2), 159-168.

Deegan, P. (1996) Recovery as a journey of the heart. Psychiatric Rehabilitation Journal, 11, 11-19.

Petersen, C., Maier, S.F., Seligman, M.E.P. (1995). Learned Helplessness: A Theory for the Age of Personal Control. New York: Oxford University Press. p 241-242.

Advocates Inc & Deegan, P (2001). The intentional care approach to supporting client choice, Intentional Care. http://www.intentionalcare.org/

Comments

An anecdote.

I knew a young woman who developed schizophrenia in her mid teens. When she lived with her parents they made sure she took her sulperide and she was able to live a pretty normal life. Then she was encouraged by various people who only knew her when she was 'well' to leave home and gain her independence. Her parents were stifling her, apparently. This she did, against the advice of people who'd seen her at her lowest but with the support of various health professionals when the fashion of 'care in the community' was at its height.

Unfortunately, but predictably, when she was feeling well she didn't take her drugs because she didn't feel she needed them and there was no-one there morning, noon and night to make damn sure she did. The voices telling her to kill herself returned. After a while, she did. Kill herself that is. She rang several of her friends around England in the early hours of one particular Friday before she lost consciousness, apologising for various strange things in such a weird way that we all rang for ambulances as soon as she put down the phone.

She was found and revived but unfortunately the paracetemol overdose had destroyed her liver and she died, fully conscious of her situation, four days later, with all those friends in the room. Sara Jane was 23. She was in a hospital for the last four days of her life then, but at least this 'consumer of health services' wasn't institutionalised any more. She'd enjoyed six months of the dignity of risk, everything apart from those hellish voices urging her to take her own life to save the world and all she loved maybe, so it wasn't all bad.

My Bipolar Story: 1943-2009-Instalment #1

married for 42 years, a teacher for 35 and a Bahai for 50.

--------------------------------------------

AN ACCOUNT OF MY BIPOLAR DISORDER

A 66 YEAR CONTEXT: October 1943 To July 2009

BY RON PRICE: George Town Tasmania Australia
(84 Pages: Font 14—32,000 words)

1. Preamble and Introduction:

1.1 This is a longitudinal, retrospective account going back to my conception in October 1943. I make reference to a genetic predisposition, a genetic susceptibility, to bipolar disorder(BPD) due to a family history of affective disorder in a first-degree relative, my mother(1904-1978). She had BPD, although her disability was never given that medical diagnosis. About half of all patients with BPD have one parent who also has a mood disorder. There is, therefore, a clinical significance in my mother’s mood disorder in the diagnosis of my own BPD. The high heritability of BPD has been well documented through familial incidence, twin, and adoption studies. There is an unquestionable justification for the inclusion of my family in my understanding of BPD. No specific gene has yet been identified as the one "bipolar gene." It appears likely that BPD is caused by the presence of multiple genes conferring susceptibility to BPD when combined with psychosocial stressors. I make this point as an opening remark and pass on to my story.

1.2 My account also provides a statement of my most recent experiences in the last two years, 2007-2009, with manic-depression(MD) or BPD as it has come to be called in recent years. Some prospective analysis of my illness is also included with the view to assessing potential long-term strategies, appropriate lifestyle choices and activities in which to engage in the years ahead. For the most part, though, this account, this statement I have written here in some 32,000 words is an outline, a description, of this partially genetic-family-based illness and my experience with it throughout my life.

if anyone wants more just ask and I will post instalment #2-----Ron-------

I am an outpatient Social

I am an outpatient Social Worker in the U.S. It seems our hospital system has not yet really caught on to the whole idea of dignity of risk. Case in point: Our team is currently treating a man who has a very lengthy history of mental illness and chronic substance abuse. He has been incredibly difficult to work with because he has an established pattern of tenuous housing. His cycle is this: First three weeks of each month, he pays for and stays in a cheap motel with his Social Security funds. The last week of each month he runs out of funds and is essentially, homeless. He presents to the hospital emergency department (a psychiatric emergency unit) and claims that if he is not hospitalized, he will walk out the door and kill himself. He articulates his suicide plan to the staff, who then hospitalize him. This happens again and again. It is painfully obvious that he is using hospitalizations as housing. He has burned many bridges with area landlords and is almost impossible to house. In discussing his issues with my colleagues this morning, the idea of dignity of risk came up. It seems (at least at this point) that the best way to break this cycle is to allow this man to walk out of the emergency department despite his so-called suicidal plan, but none of us feel confident that the hospital staff (especially the Psychiatrist) will test this to see if it will ultimately help break this cycle. Any suggestions?