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Spina BifidaEsther Ziegler

May 7th, 2015

Overview

Who am I? What is Spina Bifida? Past, present, future

Impact on My Life Spina Bifida and I

Take Home Points

Who am I?

Who am I?

Adoption: 5yrs old China to Wisconsin Deliberate assimilation

May 16th, 2015: Psychology Major Spanish Major

Who am I? (continued)

Fun Facts: Left hip socket

sea coral material Dumpster diving

Sustainability reason Passionate person

What is Spina Bifida?

What is Spina Bifida?

Definition: “baby is in the womb and the

spinal column does not close all of the way”

www.spinabifidaassociation.org

Spina Bifida: “Split Spine”

What is Spina Bifida?(continued)

Levels of severity: Low - unknown to individual Medium - between two worlds

people with & without disabilities High - surgeries, medical supplies,

etc.

Past

Impact on My Life

Past: Surgeries: feet (3x), hip (1x) & lower

back (1x) Leg braces (5x) Wheelchair Infections ER visits Bowel & bladder incontinence

Spina Bifida and I

Past: “Ignorance is bliss.” – child

mind set “Why?” – adolescent mind set

“Hate” relationshipanxiety

Present

Impact on My Life

Present: 3 surgeries:

Multiple hospital/ER visits Learning again Shift in priorities Goal: gain predictability

Impact on my life

Present: “Love – Hate” relationship continual learning stimulate

brain Passion found disability

Spina Bifida and I

Future

Future: Stable health Passion drive my life Interpersonal relationships Get a puppy!

Impact on My Life

Future: Advocator Removal of physical & social

barriers to happier lives “Love” relationship

Spina Bifida and I

Conclusion

Take Home Points

The disconnect between invisible & visible realities

Assumptions made Nonverbal body language awareness

“Where there is a will there is a way”

Focus on the “how(s)” NOT the “what(s)”

Take Home Points(continued)

“I did fun things to make me happy.”

vs. “I do fun things because I’m happy.”

Question

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