Dignity of risk is the idea that self-determination and the right to take reasonable risks are essential for dignity and self esteem and so should not be impeded by excessively-cautious caregivers, concerned about their duty of care.
The concept is applicable to adults who are under care such as elderly people, [1] people living with disability, [2] and people with mental health problems. [3] It has also been applied to children, [4] including those living with disabilities. [5] [6]
Ideas that would later develop into the concept of dignity of risk arose during the late 1960s in Sweden. Dr. Bengt Nirje formed a group for people both with and without intellectual disabilities. The group would meet to plan an outing, go on the outing, and meet afterwards to discuss how the meeting went. This allowed people with intellectual disabilities to have some 'normal experiences' in the community, and members without intellectual disabilities were told that the participants with disabilities should make their own decisions without interference, even if mistakes were made. Dr. Nirje once said, "to be allowed to be human means to be allowed to fail." This group would go on to inspire self advocacy groups around the world. [7]
The concept was first articulated in a 1972 article The dignity of risk and the mentally retarded by Robert Perske:
Overprotection may appear on the surface to be kind, but it can be really evil. An oversupply can smother people emotionally, squeeze the life out of their hopes and expectations, and strip them of their dignity. Overprotection can keep people from becoming all they could become. Many of our best achievements came the hard way: We took risks, fell flat, suffered, picked ourselves up, and tried again. Sometimes we made it and sometimes we did not. Even so, we were given the chance to try. Persons with special needs need these chances, too. Of course, we are talking about prudent risks. People should not be expected to blindly face challenges that, without a doubt, will explode in their faces. Knowing which chances are prudent and which are not – this is a new skill that needs to be acquired. On the other hand, a risk is really only when it is not known beforehand whether a person can succeed. The real world is not always safe, secure, and predictable, it does not always say "please," "excuse me", or "I'm sorry". Every day we face the possibility of being thrown into situations where we will have to risk everything … In the past, we found clever ways to build avoidance of risk into the lives of persons living with disabilities. Now we must work equally hard to help find the proper amount of risk these people have the right to take. We have learned that there can be healthy development in risk taking and there can be crippling indignity in safety! [8]
In 1980, the concept was relied upon by Julian Wolpert, Professor of Geography, Public Affairs, and Urban Planning at Princeton University, to support his argument in a paper, "The Dignity of Risk", [9] which has since been described as "seminal". [10] Wolpert's argument was that a paternalistic approach to people living with disability, prioritizing safeguarding over the rights of individuals to independent decision-making, is a limitation on personal freedom. [10]
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Allowing people under care to take risks is often perceived to be in conflict with the caregivers' duty of care. Finding a balance between these competing considerations can be difficult when formulating policies and guidelines for caregiving. [11] [2] [8] [12] [13]
Protection is often used to justify violating the rights of people with disabilities. To deny someone the opportunity to make mistakes is to violate the right to make decisions about their own lives. [15] Many self-advocates see the dignity of risk as a human right. Max Barrows, a self-advocate from Vermont, says "Life is about learning from the mistakes that you make I appreciate and we appreciate protection from people, but please don't protect us too much or at all from living our lives." [16] Protection has been used to justify institutionalization, sheltered workshops and other segregated settings. Many institutions were and are sites of abuse, neglect and sexual assault. [17] Many people with disabilities are also placed under guardianship, which is when someone else makes decisions about their life, including where they live, how they spend their money, and the health care they receive. This is done to stop people from making "bad choices." Many disability advocates argue for the replacement of guardianship with supported decision making, where people with disabilities make their own decisions with support and accommodations. [18]
Overprotection of people with disabilities causes low self-esteem and underachievement because of lowered expectations that come with overprotection. Internalisation of low expectations causes the person with a disability to believe that they are less capable than others in similar situations. [19]
In elderly people, overprotection can result in learned dependency and a decreased ability for self-care: [20]
"It is possible to deliver physical care that has positive outcomes and returns a person to full function, yet, if during that care they have not been involved, allowed to make choices and respectfully assisted with activities of daily living, it may be possible to cause psychological damage through undermining that person's dignity." [21]
The right to fail and the dignity of risk are basic tenets of multiple movements, including the independent living movement [22] and the self advocacy movement. [7]
The first of eight "guiding principles" of the United Nations' Convention on the Rights of Persons with Disabilities states: "Respect for inherent dignity, individual autonomy including the freedom to make one's own choices, and independence of persons." [23]
Article 12 of the Convention states that states "shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life" and that "shall take all appropriate and effective measures to ensure the equal right of persons with disabilities to own or inherit property, to control their own financial affairs and to have equal access to bank loans, mortgages and other forms of financial credit, and shall ensure that persons with disabilities are not arbitrarily deprived of their property." [24] [25]
Disability is the experience of any condition that makes it more difficult for a person to do certain activities or have equitable access within a given society. Disabilities may be cognitive, developmental, intellectual, mental, physical, sensory, or a combination of multiple factors. Disabilities can be present from birth or can be acquired during a person's lifetime. Historically, disabilities have only been recognized based on a narrow set of criteria—however, disabilities are not binary and can be present in unique characteristics depending on the individual. A disability may be readily visible, or invisible in nature.
An advance healthcare directive, also known as living will, personal directive, advance directive, medical directive or advance decision, is a legal document in which a person specifies what actions should be taken for their health if they are no longer able to make decisions for themselves because of illness or incapacity. In the U.S. it has a legal status in itself, whereas in some countries it is legally persuasive without being a legal document.
The disability rights movement is a global social movement that seeks to secure equal opportunities and equal rights for all people with disabilities.
Elder abuse is "a single, or repeated act, or lack of appropriate action, occurring within any relationship where there is an expectation of trust, which causes harm or distress to an older person." This definition has been adopted by of the World Health Organization (WHO) from a definition put forward by Hourglass in the UK. Laws protecting the elderly from abuse are similar to and related to laws protecting dependent adults from abuse.
Neurodiversity is a proposed framework that argues there is intrinsic diversity in human brain function and cognition, and that certain things currently classified as neurodevelopmental disorders are differences and disabilities but are not necessarily pathological. The framework grew out of the autism rights movement and builds on the social model of disability, arguing that disability partly arises from societal barriers, rather than attributing disability purely to inherent deficits. It instead situates human cognitive variation in the context of biodiversity and the politics of minority groups. Some neurodiversity advocates and researchers argue that the neurodiversity paradigm is the middle ground between strong medical model and strong social model.
The autism rights movement, also known as the autistic acceptance movement, is a social movement allied with disability rights that emphasizes a neurodiversity paradigm, viewing autism as a disability with variations in the human brain rather than as a disease to be cured. The movement advocates for several goals, including greater acceptance of autistic traits and behaviors; reforms of services - i.e. services that focus on improving quality of life and well-being instead of suppression and masking of autistic traits that are adaptive or not harmful or imitations of social behaviors of neurotypical (non-autistic) peers ; the creation of social networks and events that allow autistic people to socialize on their own terms; and the recognition of the autistic community as a minority group.
A legal guardian is a person who has been appointed by a court or otherwise has the legal authority to make decisions relevant to the personal and property interests of another person who is deemed incompetent, called a ward. For example, a legal guardian might be granted the authority to make decisions regarding a ward's housing or medical care or manage the ward's finances. Guardianship is most appropriate when an alleged ward is functionally incapacitated, meaning they have a lagging skill critical to performing certain tasks, such as making important life decisions. Guardianship intends to serve as a safeguard to protect the ward.
Independent living (IL), as seen by its advocates, is a philosophy, a way of looking at society and disability, and a worldwide movement of disabled people working for equal opportunities, self-determination, and self-respect. In the context of eldercare, independent living is seen as a step in the continuum of care, with assisted living being the next step.
Developmental disability is a diverse group of chronic conditions, comprising mental or physical impairments that arise before adulthood. Developmental disabilities cause individuals living with them many difficulties in certain areas of life, especially in "language, mobility, learning, self-help, and independent living". Developmental disabilities can be detected early on and persist throughout an individual's lifespan. Developmental disability that affects all areas of a child's development is sometimes referred to as global developmental delay.
Nursing ethics is a branch of applied ethics that concerns itself with activities in the field of nursing. Nursing ethics shares many principles with medical ethics, such as beneficence, non-maleficence and respect for autonomy. It can be distinguished by its emphasis on relationships, human dignity and collaborative care.
The term self-advocacy, which means speaking up for oneself and one's interests, is used as a name for civil rights movements and mutual aid networks for people with intellectual and developmental disabilities. The term arose in the broader civil rights movements of the 1960s and 1970s, and is part of the disability rights movement. Today there are self-advocacy organizations across the world.
People-first language (PFL), also called person-first language, is a type of linguistic prescription which puts a person before a diagnosis, describing what condition a person "has" rather than asserting what a person "is". It is intended to avoid marginalization or dehumanization when discussing people with a chronic illness or disability. It can be seen as a type of disability etiquette but person-first language can also be more generally applied to any group that would otherwise be defined or mentally categorized by a condition or trait.
A caregiver, carer or support worker is a paid or unpaid member of a person's social network who helps them with activities of daily living. Since they have no specific professional training, they are often described as informal caregivers. Caregivers most commonly assist with impairments related to old age, disability, a disease, or a mental disorder.
Intellectual disability (ID), also known as general learning disability in the United Kingdom and formerly mental retardation, is a generalized neurodevelopmental disorder characterized by significantly impaired intellectual and adaptive functioning. It is defined by an IQ under 70, in addition to deficits in two or more adaptive behaviors that affect everyday, general living. Intellectual functions are defined under DSM-V as reasoning, problem‑solving, planning, abstract thinking, judgment, academic learning, and learning from instruction and experience, and practical understanding confirmed by both clinical assessment and standardized tests. Adaptive behavior is defined in terms of conceptual, social, and practical skills involving tasks performed by people in their everyday lives.
The Mental Disability Advocacy Center (MDAC) is an international human rights organisation founded in Hungary in 2002. It is headquartered in Budapest.
Disability abuse is when a person with a disability is abused physically, financially, sexually and/or psychologically due to the person having a disability. This type of abuse has also been considered a hate crime. The abuse is not limited to those who are visibly disabled or physically deformed, but also includes those with learning, intellectual and developmental disabilities or mental illnesses.
A vulnerable adult is defined as an individual age 18 or older who has the functional, mental, or physical inability to care for themselves. It can also refer to one who is unable to protect themselves against significant harm or exploitation. A vulnerable adult is one that has a substantial mental or functional impairment. A vulnerable adult, due to the reasons listed previously, may also require specific care from community resources. Substantial functional impairment is an inability referring to physical limitations. Substantial mental impairment is a disorder of mood, thought, perception, memory, or orientation. This grossly impairs the person's judgement, behavior, or ability to be independent. The life experiences of these individuals, as a result, can vary significantly from someone that has not been diagnosed as a Vulnerable Adult.
Robert Perske was an American author, theologian, and disability rights activist.
Supported decision making is the idea that people with mental or intellectual disabilities should make decisions about their own lives with the support of a team of people. Supported decision-making is an alternative to the guardianship model, where someone makes decisions for a person. Supported decision-making aims to promote self-determination and independence.