Positive Approaches Journal, Volume 8, Issue 3

O'Brien | 47-54

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Retrieving these foundations regarding the idea of dignity of risk matters because the changes that occurred in the 50 years since Perske’s writing have sharpened conflict between the pursuit of different positive ideologies. The field has never been so certain of people’s right to choose. The first General Principle in The UN Convention on the Rights of Persons with Disabilities is, “Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons.”³ Also, the domain of service provision has never been so concerned with assessing, preventing and managing risk. At its best, this concern actively promotes safety and health, and anyway it related efforts to comply with regulations and to minimize liability. Efforts to dissolve the conflict by subordinating one good to the other are unsatisfying. Neglecting concern for health and safety opens the way to avoidable harm; asserting the supremacy of others’ judgments about health and safety insults dignity and stifles development. Without thoughtful deliberation grounded in particular circumstances, risk avoidance is favored because it is the simpler solution.

Rising consciousness of the ways in which services to people with intellectual disabilities (ID) and autism historically been offered via power exercised over these often socially excluded people requires reflection and re-examining our thoughts about risk. Service workers not only have the power to make decisions about risk, they, along with policy makers, also control the assistance available to support people’s efforts to discover and pursue valued social roles. Ethical service providers and policy makers realize they are accountable for any power inequality that might shape what they offer those who count on their services.

Prudence Shows the Way

Perske shows the way forward in his choice of modifiers for the risk he advocates. Risk, he says, must be prudent and decisions about limiting freedom in order to decrease the chances of risk must be made fairly.

Fair deliberations lead to action that considers both the right to risk and the right to safety and health as each individual exercises their freedom to pursue what matters to them in a specific situation. Prudence – the virtue of choosing the right means to good ends under conditions of uncertainty⁴– guides fair deliberations. In English, prudence has acquired a shadow of caution and risk avoidance.  The Latin translation of a key word in Greek philosophy provides a better understanding of its power. In this usage, prudence means “practical wisdom” (the Greek in Aristotle’s Nicomachean Ethics is pronēsis).

Practical wisdom is the art of realizing general principles in particular circumstances. Prudence moves beyond the binary, “either risk or safety; autonomy or health,” into a socially creative space, “both risk with safety; development of capacity for wise choice”. Prudence doesn’t debate generalities, “Does Susan have the right to attend next week’s church revival?” Neither does it indulge in escaping the creative potential in uncertainty with pre-emptive judgements, such as “The crowd’s emotional excitement will overstimulate Susan and result in unsafe behavior.” Practical wisdom inquires, “How can Susan have the best possible chances to get what she wants from participating in this specific church event? Where can we foresee breakdowns and what combination of accommodation and assistance provides the best odds of preventing, repairing or retreating from them? Together how might we provide or arrange the required support for her.”

Those who have a say in determining acceptable risk have different perceptions of what is dangerous and what limitations are acceptable. Fair deliberations of these differences have preconditions. A fair deliberation is demanding. It calls for grounded inquiry into varying assumptions about danger and active exploration of possibilities for deploying creative support. Practical wisdom takes into account the person’s current capabilities and vulnerabilities, the likely protections and challenges in the situation the person wants to navigate, and the competence of available support. All of these considerations happen under uncertainty: it’s not possible to predict with complete confidence how a future event will play out and how a person will respond. In the event some people melt down in unpredicted ways; others show abilities no one has seen before. Uncertainty can draw the imagination toward the negative, if not catastrophic, “what-ifs”. Low probability losses claim more energetic attention than more likely rewards.⁵

When the process for deliberating on risk is sufficient, the person themselves is as active a participant as the competence of the rest of the others involved can support. The individual should be engaged in decision making and in assessing the situation, generating ways to address potential risks, and deciding on a course of action along with support staff. Others actively involved in deliberation should know the person in a way that gives them a reliable sense of the whole person, including their purposes and preferences as well as their specific vulnerabilities and the impact of their impairments in different life situations. A strong person-centered planning process clarifies what matters to the person and develops a team able to creatively negotiate differences. When something matters to a person, oftentimes decision-makers have a bias toward doing what it takes to get to yes. Sometimes professional team members who know the person less well, or managers who know about a person from other’s verbal or written accounts, assume responsibility for pronouncing on questions of risk. A competent supports team deliberates, listens, raises facilitating questions, and encourages creative responses and prudent decision-making and is made up of those with strong personal connections and day-to-day interactions with the individual who wishes to pursue a potential/perceived risk.

Confidence in the competence, commitment, and relationship continuity of the direct support workers whose assistance the person will rely on in a potentially risky situation reduces uncertainty. There is more room for risk when people and direct support workers have built trust through shared experiences. There is more room for risk when those who support a person have personal knowledge of what could challenge that person and what is likely to work to recover from unsafe occurrences or breakdowns in participation. There is more room for risk when direct support workers can draw on past experience in accompanying a person into new experiences to decide when to stay in the background and when and how to step forward.

Organizational Accountability for Power Over People

 

Biography

John O’Brien learns about building more just and inclusive communities from people with disabilities, their families, and their allies. He uses what he learns to advise people with disabilities and their families, advocacy groups, service providers, and governments and to spread the news among people interested in change by writing and through workshops. He works in partnership with Connie Lyle O’Brien and a group of friends from 18 countries.

He is a Fellow of the Centre for Welfare Reform (UK) and is affiliated with the Center on Human Policy, Law & Disability, Syracuse University (US), in Control Partnerships (UK), and the Marsha Forest Centre: (Canada). You can find his books and papers at inclusion.com and The Centre for Welfare reform (https://goo.gl/svgNP1)

Contact

John O’Brien

johnwobrien@mac.com

58 Willowick Dr

Lithonia, GA 30038