Self-Determination, Inherent Dignity, and Full

Rutgers, The State University of New Jersey Liberty Plaza, 335 George Street, New Brunswick, NJ 08901

rwjms.rutgers.edu/boggscenter p. 732-235-9300 f. 732-235-9330

Michael L. Wehmeyer, PhD

Ross and Marianna Beach Distinguished Professor in Special Education

Chair, Department of Special Education Senior Scientist and Director, Beach Center on Disability

University of Kansas, Lawrence, KS

Self-Determination, Inherent Dignity, and Full Participation

October 30, 2020

The attached handouts are provided as part of The Boggs Center’s continuing education and dissemination activities. Please note that these items are reprinted by permission from the author. If you desire to reproduce them, please obtain permission from the originator.

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Michael L. Wehmeyer, PhDRoss and Marianna Beach Distinguished Professor in Special Education

Chair, Department of Special EducationSenior Scientist and Director, Beach Center on Disability


October 30, 2020

Colleen McLaughlin, MEd

Associate DirectorThe Boggs Center on Developmental Disabilities

• COVID-19 National & State Resources• Plain Language and Accessible Information• Healthcare & Communication Resources• Resources in Support of Physical &

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Certificates will be emailed to attendees who meet these requirements next week

10/29/2020

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Michael L. Wehmeyer, PhDRoss and Marianna Beach Distinguished Professor in Special Education



October 30, 2020

Michael Wehmeyer, PhD

Ross and Marianna Beach Distinguished Professor in Special EducationChair, Department of Special Education

Senior Scientist and Director, Beach Center on DisabilityUniversity of Kansas, Lawrence, KS


Michael L. Wehmeyer, Ph.D.Ross and Marianna Beach Distinguished Professor in Special Education


University of Kansas

Inherent Dignity

Article 3-General Principles, United Nations Convention on the Rights of Persons with Disabilities

a. Respect for inherent dignity, individual autonomy including the

freedom to make one’s own choices, and independence of

persons;

inherent [in-heer-uh-nt]

adjective•existing in someone or something as a permanent and inseparable element, quality, or attribute.

Synonyms innate, native, inbred, ingrained

dignity [dig-ni-tee]•The state of being worthy or honorable, elevation of mind or character, true worth;

•Elevated rank; honorable station; high office;•Quality suited to inspire respect or reverence; loftiness and grace, impressiveness; stateliness.

From dignus [Latin] meaning worthy

IndignityI would like to present some thoughts from the viewpoint of an 89-year-old with 64 years of experience in the fields of human services and disability. Thus, I have a vivid memory of conditions that to most readers will only be historical facts that they have read. I saw firsthand the dismal conditions in the overcrowded institutions that originated in good intentions, to give asylum and protection, and quickly became warehouses to offer society protection from the so-called “mental defectives.” I saw in the late 1930s overcrowding with all its dire consequences. The actual Holocaust story is kept alive because of a strong belief that this is necessary to prevent a repetition in years to come. Likewise, the institutional horrors must be kept alive by eyewitnesses, as it is in Burton Blatt’s trailblazing Christmas in Purgatory, which he published at great risk to his professional reputation. It must not be forgotten, it cannot be erased from our professional history

History of the Disability Movement

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Historic Understandings of Disability

Historically, disability was understood within a model that was an extension of the medical model, which viewed health problems as an individual pathology; a problem within the person.

Within such a context, disability was understood as a characteristic of the person; as residing with the person.

The person was seen as broken, diseased, pathological, atypical, or aberrant; as outside the norm.

Perhaps unavoidably, people with disabilities were, consequently, associated with numerous negative stereotypes.

Medical-Institutional Paradigm

Community Services Paradigm

Supports Paradigm

Isolation, Enlargement, and Economization

"a snake pit... the children live in filth…”

“… I think that particularly at Willowbrook, we have a situation that borders on a snake pit, and that the children live in filth, that many of our fellow citizens are suffering tremendously because lack of attention, lack of imagination, lack of adequate manpower. There is very little future for these children, for those who are in these institutions. ….”

Image from Parallels in Time, MinnesotaDevelopmental Disabilities Council http://www.mnddc.org/parallels/

Christmas in Purgatory

Burton Blatt, EdD

The Parent Movement

President Kennedy addresses the 13th Annual Convention Luncheon of the National Association for Retarded Children on October 24, 1963 at the Mayflower Hotel, Washington, DC (photo from the author’s collection).

President John F. Kennedy gives Eunice Kennedy Shriver the pen he used to sign intellectual disability legislation in October, 1963 (photo from the collection of David Braddock, used with permission).

The Parent Movement

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The Parent Movement

Earlier stereotypes of disability replaced with more humane, though still in many ways debilitating, stereotypes.

People with disabilities seen as objects to be fixed, cured, rehabilitated and pitied; as “victims” of their disabling condition, worthy of charity.

Holy innocents; eternal children

Increased emphasis on “mental age.”

1. Understanding people as different soon becomes construed as inferior, leading to discrimination and maltreatment.

2. Separate is never equal.23

3. We are constrained by our own lackof imagination.

“… I think that particularly at Willowbrook, we have a situation that borders on a snake pit, and that the children live in filth, that many of our fellow citizens are suffering tremendously because lack of attention, lack of imagination, lack of adequate manpower. There is very little future for these children, for those who are in these institutions. ….”

Image from Parallels in Time, Minnesota

Developmental Disabilities Council http://www.mnddc.org/parallels/

4. We have always been wrong about what we believe people with disabilities can achieve.

5. The injustice committed against people with disabilities throughout time has been to deny them the dignity afforded to persons simply by their status as human beings.

Article 3-General Principles, United Nations a. Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons;

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21st Century Supports?

Incrementalism Has Failed

Incrementalism Has Failed

The Past is Prologue

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The Self-Advocacy Movement

Ed Roberts

Justin Dart at signing of ADA

Bengt Nirje at AAIDDTia Nelis and

Elizabeth Weintraub

Nancy Ward

Robert Williams at SABE

Emergence of Strengths-Based Models of Disability

1980- International Classification of Impairments, Disabilities, and Handicaps (ICIDH)

2001- International Classification of Functioning, Disability and Health (ICF)

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World Health OrganizationInternational Classification of Functioning, Disability and Health (ICF) 2001

A universal classification of disability and health for use in health and health related sectors.

Disability was a function of the relationship between impairment (health condition), environmental and contextual factors, and personal factors.

Within the ICF, disability exists only as a function of the gap between a person’s capacities and the demands of the environment.

PersonalIncompetence

Changing Understandings of Disability

Disability


Environment

PersonalCompetence


Environment

PersonalCompetence

Implications of Strengths-based Approaches to Disability

Strengths-based

Part of, and not apart from, typical human functioning

Focus on environment/context, not fixing the person;

Emphasizes supports, not programs

Focus on full participation;

Emphasis on promoting/supporting self-determination.

International Classification of Functioning, Disability and Health (ICF)

•Activity: Execution of a task or action by an individual.•Participation: Involvement in a life situation.

Participation is a person’s self-determined involvement in a pattern of life (i.e., roles, life situations, and activities).• Self-determined involvement, as such, refers to a

person’s active, intentional, volitional, goal-directed, sustained, and connected engagement in a pattern of life.

• Pattern of life represents the roles, life situations, and activities that comprise daily life. In general, patterns of life represent socially defined sets of behavior that support participation.

Participation

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Family & Friends

Nonpaid Supports

Generic Services

Specialized Services• promote the interests and causes of

individuals with or without disabilities;• enable them to access opportunities,

information, and relationships inherent within integrated work and living environments;

• result in enhanced interdependence, productivity, community inclusion, life satisfaction, and human functioning.

In other words, anything that enables a person to live a self-determined life.

Supports are Resources and Strategies that:

Dignity, Autonomy, and Choice

Article 3-General Principles, United Nations a. Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons;

Self-Determination: Dignity, Respect, Equality…

"People with autism should

be treated with the same dignity,

respect, and equality as people

without autism.”

Jean-Paul Bovee

"We don't have to be told what self-

determination means. We know it is just

another word for a life filled with rising

expectations, dignity, respect and

opportunities.“

Robert Williams

Pearl S. Buck, 1932 Pulitzer Prize, 1938 Nobel Prize

"none who have always been free can understand the terrible fascinating power of the hope of freedom to those who are not free."

The Principle of Normalization in Human Services

The Dignity of RiskRobert Perske(1972)

The world in which we live is not always safe, secure and predictable.... We must work to develop every human resource within us in order to prepare for these days. To deny any person their fair share of risk experiences is to further limit them for healthy living. (p. 199)

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Self-Determination Is a Basic Human Right

The Universal Declaration of Human Rights

Article 2

Everyone is entitled to all the rights and freedoms set forth in this Declaration, without distinction of any kind, such as race, color, sex, language, religion, political or other opinion, national or social origin, property, birth or other status.

[W]e may then define freedom as the range of effective choices open to an actor, such as an individual or a group of persons. The choices of action or policy open to a group eventually can be translated by virtue of their consequences into indirect choices for individuals (McDougal, Lasswell, Chen, 1975, American University Law Review, 24:219).

Article 23

(1) Everyone has the right to work, to free choice of employment, to just and favorable conditions of work and to protection against unemployment.

The Right to Self-Determination

Bengt Nirje (1972)

One major facet of the normalization principle is to create conditions through which a disabled person experiences the normal respect to which any human being is entitled. Thus, the choices, wishes, desired, and aspirations of a disabled person have to be taken into consideration as much as possible in actions affecting him. To assert oneself with one’s family, friends, neighbors, co-workers, other people, or vis-à-vis an agency is difficult for many persons. It is especially difficult for someone who has a disability or is otherwise perceived as devalued. But, in the end, even the impaired person has to manage as a distinct individual, and thus has his identity defined to himself, and to others, through the circumstances and conditions of his existence. Thus, the road to self-determination is indeed both difficult and all-important for a person who is impaired.

The Right to Self-DeterminationBengt Nirje (1972)

clearly articulates the importance of this personal self-determination to all people, not excluding people with intellectual and developmental disabilities;

equates self-determination with the respect and dignity to which all people are entitled;

recognized that people define themselves, and others define them, by the circumstances and conditions of their lives.

This recognition that self-determination is fundamental to attaining respect and dignity and to perceiving oneself as worthy and valued is a major reason people with disabilities have been unequivocal and consistent in their demand for control in their lives.

Self-Determination and Autonomy

Autonomy

Two primary conceptualizations of autonomy in the adolescent development literature:

1. Autonomy-as-independence: Degree to which adolescents are self-reliant and make decisions without input from others.

2. Autonomy-as-volition: Degree to which adolescents regulate their behavior based on deeply held values, preferences, and interests.

Self-Determination and DisabilityWithin the context of the disability rights and advocacy movement, the construct has been imbued with the empowerment and “rights” orientation typically associated with the sense of the term as referring to independence and self-governance; as autonomy-as-independence.

Empowerment is a term usuallyassociated with social movements, and the struggle of marginalized people for equal rights.

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Self-Determination and Determinism

The philosophical doctrine of determinism posits that actions are caused by events or natural laws that precede or are antecedent to the occurrence of the action. Behavior, then, is governed by these other events or natural laws.

Self-Determination and Determinism

Self-determinism, or self-determination, implies that individuals cause themselves to act in certain ways, as opposed to someone or something else ‘causing’ us to act in certain ways

People who are self-determined embody the characteristic or quality of ‘self-determination,’ a noun referring to the degree to which that person acts or behaves in ways that are self-(instead of other-) caused.

What is Self-Determination?

Self-determined behavior refers to volitional actions that enable one to act as the primary causal agentin one’s life and to maintain or improve one’s quality of life.

Causal agency: To make or cause something to happen in one’s life.

Volitional action: Making a conscious choice or decision with deliberate intention.

Misperceptions of Self-Determination

Self-determination is control.

Self-determination is independent performance.

Self-determination is justmaking a choice.

Self-determination is justinvolving people in planning.

Technology to Promote Self-Determinationand Autonomy Digital talking books

Smartphones, iPads, & Tablet PCs

Cloud-based apps

3D Printing

The Internet of Everything

http://www.colemaninstitute.org/declaration

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Cognitive Accessibility

Technology can provide a support that narrows or eliminates the gap between personal capacity and demands of the environment or context.

Environments, technology, and materials that are “cognitively accessible” are those incorporate design features to ensure that people who need supports in cognitive areas-including language ability and auditory reception, reasoning and idea production, memory and learning, visual perception, cognitive speed, and knowledge and achievement—are able to access those environments and use the technology and materials.

Applied Cognitive TechnologiesTechnology supports that enable people with cognitive disabilities to successfully function in typical environments, to increase participation in tasks and activities in typical environments, and to promote social inclusion, self-determination, and an enhanced quality of life.

Environments, technology, and materials that are “cognitively accessible” are those incorporate design features to ensure that people who need supports in cognitive areas-including language ability and auditory reception, reasoning and idea production, memory and learning, visual perception, cognitive speed, and knowledge and achievement—are able to access those environments and use the technology and materials.

Applied Cognitive Technologies

First wave in the field of Applied Cognitive Technologies:

Prompting and cueing technologies to assist in memory and organization functions.

Limited focus on more complex problem-solving/decision making

Some focus on context –aware prompting systems

Literacy supports and universal design for learning

Sociobehavioral, adaptive behavior, and independent living supports.

Communication technologies (primarily email)

Monitoring technologies

Evolution of Mobile Cognitive Support Technologies

Pocket Coach: Pre-PDA “PDA” for individuals with intellectual disabilities, providing step-by-step verbal task prompting.


Second wave in the field of Applied Cognitive Technologies:

Wayfinding and navigational supports.

Smart homes and smart technology, including remote monitoring devices

Voice communication technologies (mobile phones, then smart phones)

Use of multimedia and web accessibility


Third wave in the field of Applied Cognitive Technologies:

Cloud and app-based technologies.

Social media and social networks

Self-determination and personal autonomy supports (e.g., photovoice, survey and life planning tools, remote monitoring that is not invasive, technology that is participation-based)

Mobile digital image communication applications

Health-related technologies

Context aware and location-based learning.

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Universal Design Feature

Reported Not Reported

Equitable Use 8% 92%

Flexible Use 26% 74%

Intuitive Use 8% 92%

Perceptible Info 3% 97%

Tolerance Error 6% 94%

Low Effort 1% 99%

Size/Space 0% 100%

Universal Design and Technology Used by People with Cognitive Disabilities

Error minimization strategies Remove buttons from

screen rather than “graying them out.”

Flexibility and simplicity in user interface. Reduced screen clutter

Provide only needed functions

Consistent placement of familiar buttons

Universal Design Strategies

Simplicity of Use

Minimize cryptic Metaphors/images

Minimize physically difficult options (double clicking, scroll bars).

Focus on primary functionality of app/device/website.

Cursor over voice vs. Cursor over text.

Universal Design Strategies

Complexity: Feature Creep The Evolution of the Alarm Clock

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The Evolution of the Alarm Clock The Evolution of the Alarm Clock



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Barriers to Simplicity: Security Barriers to Simplicity: Security

Barriers to Adoption and Use: CostSelf-directed career interest inventory providing media rich

environment for expressing career interests. Helps staff focus job shadowing on jobs of highest interest to the consumer.

Career Interest Assessment for Job Placement

Job Quest– Accessible Career Interest Inventory

A Palmtop Computer-Based Intelligent Aid for Individuals with Intellectual Disabilities to Increase Independent Decision Making

Davies, Stock, & Wehmeyer, (2003). Research and Practice for Persons with Severe Disabilities, 28, 182-193.

Established efficacy of using a palmtop-based video and audio prompting system to enable adults with intellectual disability to perform vocational tasks that included a decision point.

PocketCompass© reduced decision point errors, task completion errors, and prompts required.

Transportation Needs Assessment, Training, and Pre-Trip Planning

Smart Travel Concierge System (STCS)

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Smart Homes

“Motes gather information about activities of daily living for monitoring by a caregiver. This increases client independence and permits reduction of number of full-time caregiving staff.”(source: Ross, 2004, IEEE Spectrum online)

Issues:PrivacyOnly for benefit of support provider?

The Dignity of Work

“There is no worse material poverty, I am keen to stress, than the poverty that prevents people from earning their bread and deprives them of the dignity of work.”

“Work is fundamental to the dignity of a person.”

Pope Francis

21st Century Careers

Career construction is the idea that: “Careers do not unfold; they are constructed as individuals make choices that express their self-concepts and substantiate their goals in the social reality of work role” (Savickas, 2005, p. 43).

The Life Design approach “is framed as a lifelong self-construction process that aims to promote skills and competences in overall life planning” (Wehmeyer et al., in press). [Life Design in CDTEI.pdf]

Life-designing emphasizes enabling young people to become experts in ‘constructing’ their own career paths, taking on transitions, addressing threats and opportunities, and designing a better life (Nota & Rossier, 2009).

Nota, L., & Rossier, J. (2014). Handbook of the life design paradigm: From practice to theory, from theory to practice. Gottingen: Hogrefe.

Savickas, M. L. (2005). The theory and practice of career construction. In S. D. Brown & R. W. Lent (Eds.), Career development and counseling: Putting theory and research to work (pp. 42–60). Hoboken, NJ: Wiley.

http://www.careerconstructioninstitute.org/

Life Design

Participation in meaningful activities shapes a person’s Identity.

People need strategies for successful participation, rather than specific information or content. –“how to do” vs “what to do”

Problem solving involves using a variety of tools and an iterative process (more than just teaching a task)[Life Design in CDTEI online first.pdf]

Disruptive Innovation “Today, in the new age, a majority of traditional routine tasks that required a

homogenous set of skills and knowledge are now performed by machines, and human needs have shifted from basic needs to more psychological, aesthetic and intellectual needs. Thus, the full spectrum of human talents has become economically valuable” (Zhao, 2018, p. 57).

Changes in society always redefine the value of knowledge and skills. Changes brought about by technology have made traditionally valued skills and knowledge obsolete, requiring the need to consider new human qualities.

Understandings of human nature and learning suggest that human beings are differently talented, have different desires and interests, and have different experiences that interact with their natural talents and interests to give each person a unique profile of abilities and desires, stronger in some areas and weaker in others.

In a world in which technology has and will continue to replace humans in routine tasks, we need human beings to be unique, creative, and entrepreneurial and an education system that helps every student become uniquely creative and entrepreneurial. (p. 9)

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We Are, All of Us, In the Dignity Business

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Self-Determination, Inherent Dignity, and Full