Ethics: The Culture of Disability

Published on May 17, 2024

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PRESENTATION OUTLINE

Ethics: The Culture of Disability

Jen Robinson, MSN-PH, RN, FCN-BC
Photo by fabiogis50

Breathe

the beginning of life...

Joseph Fletcher

Medical Ethicist

At the time, Joseph Fletcher specialized in researching moral, legal and ethical issues specific to healthcare. He was an American professor-and the first professor of medical ethics

Founded: Theory of situational ethics in the 1960s and his work significantly influenced discussions surrounding: Abortion, infanticide, euthanasia, cloning, and eugenics,

As recently as

History

Archaic to Enlightenment
Photo by electricnude

Down Syndrome

Ethical Considerations
56 Years ago
Medical ethicist

Purpose

  • Ethical considerations
  • Future outlook
  • Nurse- why does ethics in nursing matter?
  • Humanitarian
  • Mother
  • Message

Alec

His life Matters
I know Down syndrome from a completely different perspective. I am a mother to a son with Mosaic Down syndrome. What is exceptional.

What is Down syndrome

Over 6,000 born children were born in the United States last year; 1 in 700 babies

You have 23 pairs of chromosomes in every cell of your body, 46 in total.

Alec has one more than you do- 47 chromosomes and so does everyone else like him.

We only learned about this extra chromosome 66 years ago. Dr. Jerome Lejune- devoted his life to improving the lives of those like Alec who are born with the extra chromosome

Never his intention that his discoveries would lead to the test that would prevent the lives he devoted his life to.


All lives matter- Alec's life matters

Alec

Success stories

Belonging

Alec & Dominick

Beyond What We Imagined

CSU RAM Scholar Program

Kathy Gaffney

Down syndrome advocate and speaker
Swimmer- Swam the English Channel

Paradox

  • Future uncertain
  • Prenatal testing
  • Earlier diagnosis
  • Current beliefs of medical professionals
  • Barrier: Timely, up to date information and progress
  • Pregnancy statistics
  • Ethical considerations
Old and outdated data

Pregnancies with the extra chromosome are being terminated.

Medical model vs. Advocacy Model

Gap in our communities

Story- Patient

More Work to be Done

Change the Conversation

Ethical Lens

Call To Action

My Request

Spread the Word to end the Word

Thank You

Jennifer Robinson

Haiku Deck Pro User