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Self-Determination:  Toward Lives Filled with Rising Expectations, Dignity, Respect, and Self-Determination:  Toward Lives Filled with Rising Expectations, Dignity, Respect, and

Self-Determination: Toward Lives Filled with Rising Expectations, Dignity, Respect, and - PowerPoint Presentation

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Self-Determination: Toward Lives Filled with Rising Expectations, Dignity, Respect, and - PPT Presentation

Michael L Wehmeyer PhD University of Kansas Inherent Dignity Equality and Rights inherent in heer uh nt adjective existing in someone or something as a permanent and inseparable element quality or attribute ID: 783694

people determination respect dignity determination people dignity respect told person years power life conditions account one

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Slide1

Self-Determination: Toward Lives Filled with Rising Expectations, Dignity, Respect, and Opportunity

Michael L. Wehmeyer, Ph.D.University of Kansas

Slide2

Inherent Dignity, Equality, and Rights

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;

Elevation, grandeur;

Elevated rank; honorable station; high office;

Quality suited to inspire respect or reverence; loftiness and grace, impressiveness; stateliness.

From

dignus

[Latin] meaning worthy

Slide3

Indignity

I 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

Gunnar

Dybwad

Slide4

Isolation, Enlargement, and Economization

4

Slide5

5

"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, Minnesota

Developmental Disabilities Council

http://www.mnddc.org/parallels/

Slide6

6

Christmas in Purgatory

Burton

Blatt

Slide7

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

Slide8

The Right to Self-Determination Bengt

Nirje (1972)

One major facet of the normalization principle is to create conditions through which a handicapped person experiences the normal respect to which any human being is entitled. Thus, the choices, wishes, desired, and aspirations of a handicapped 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.

Slide9

The Right to Self-Determination Bengt

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.

Slide10

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)

The Dignity of Risk

Robert

Perske

(1972)

Slide11

self-determination: noun

(sèlf´dî-tûr´me-nâ´shen

)

Determination of one's own fate or course of action without compulsion;

Freedom of the people of a given area to determine their own political status; independence

.

self-determined, adj.-- self-determining, adj.

The American Heritage Dictionary of the English Language, Third Edition (1992). Houghton Mifflin Company

.

Slide12

Within the context of the disability rights and advocacy movement, the construct as a personal characteristic has been imbued with the empowerment and “rights”

orientation typically associated with

the

sense of the term as a

national

or political construct.

Empowerment

is a term

usually

associated

with social movements,

and

typically is used, as Rappaport

(1981) stated, in reference to

actionsthat “enhance the possibilities for

people

to control their lives” (p. 15).

Self-Determination and Disability

Slide13

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

Slide14

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.

Self-Determination and Determinism

Slide15

Self-determined behavior refers to

volitional actions that enable one to act as the primary causal agent in 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.

What is Self-Determination?

Slide16

“When I moved to New Bedford, I wanted to open a checking account. I went over to the bank and gave the $10 to open the account and asked them if there would be a problem. They said no. But, when I went back a couple of days later, they said they couldn’t understand my signature.”

Raymond J. Gagne

What is Self-Determination?

Slide17

“I thought about this and realized that I had a checking account before I moved, and that had worked fine. The next morning, I put on a suit and tie and went down to the main branch. I asked to see the bank president. They told me he was in a meeting. I told them I would wait.”

What is Self-Determination?

Slide18

I waited for about 2 minutes and he came out. He brought me into a room and asked me what the problem was. I told him. I also brought my canceled checks and showed him that I had an account before. He apologized and I got my checking account.

That is why self-determination is important to me

.”

What is Self-Determination?

Slide19

The Arc’s Bill

Sackter

Award

Slide20

Pearl S.

Buck

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."

Slide21

A Self-Made Manby Raymond J. Gagne

“My name is Raymond J. Gagne. This is a true story. I was born on January 10, 1945 in Attleboro, Massachusetts. I am a person with cerebral palsy” (p. 327).

Slide22

Eight Years of Power

My mother felt there was something wrong with me. She took me to many doctors and hospitals to see if they knew how to help me. They told my mother I would never walk.When I was home, I used to sit in a rocking chair next to a window. My brothers and sisters went to school. At the time, there was no school for me.

When I was 8, my mother told me I was going away.

Slide23

A Life of No Power: Eighteen Years in an Institution

After arriving at the state school, I was put in Building 7.Every morning we would wake up at 6:00. An attendant would help me put on the clothes he had laid out the night before. I didn’t have any say about what I wore.The staff never seemed to prepare me for living outside the institution. They didn’t seem to think I would make it on my own. Up until the age of 14, I wasn’t allowed to go to school.

Slide24

Twenty Years in the Real World: A Struggle for Power

The day I moved out, some staff told me I would be back in a month. They may be still waiting for me to come back.That same year I went on a vacation to Washington, D.C. by myself. This was the first time I had ever done this.During the fall I moved into my own apartment after a counselor at a camp for people with cerebral palsy told me she thought I could.

Slide25

Unlike the staff at the institution, the human services professionals I met at this job treated me with respect. They gave me a chance to contribute my input and feedback and believed in many of my ideas. My colleagues also adapted the working environment to help me communicate with them.

Twenty Years in the Real World: A Struggle for Power

Slide26

I wrote this story to let people know what it was like growing up in an institution from the 1950s through the 1970s. The total lack of power in making decisions about my life made me angry and I was treated as an outcast. I feel that what has happened to me should never happen again.

Twenty Years in the Real World: A Struggle for Power

Slide27

We Are, All of Us, In the Dignity Business