Wisdom Shared with Carole Blueweiss

George Estreich is an award-winning writer whose work includes poetry, memoir, and non-fiction. He is also a musician who plays with the band Mule On Fire. In addition to writing and music. George is an activist, storyteller, husband, and father to Ellie and Laura.  George talks about raising his daughter, Laura, who was born with Down syndrome. And then he talks about biotechnology, disability, and the stories we tell ourselves. He discusses how all people are more than a single identity and not only are stereotypes untrue, but they are also incomplete.

For more information about Down syndrome, see here.

Find and follow George: https://georgeestreich.com/

Laura's episode video with transcript: https://youtu.be/Su9LTiwiyGQ

Video with transcript of this episode: https://youtu.be/A5GHuyOK608

FROM THIS EPISODE:

The Shape of the Eye by George Estreich

Fables and Futures: Biotechnology, Disability, and the Stories We Tell Ourselves by George Estreich

Unexpected: Parenting, Prenatal Testing, and Down Syndrome by Alison Piepmeier with George Estreich and Rachel Adams

No Pity: People with Disabilities Forging a New Civil Rights Movement by Joseph P. Shapiro

What Can a Body Do?: How We Meet the Built World by Sara Hendren

Alison Piepmeier

Alison's blog archive: http://alisonpiepmeier.blogspot.com/

Unified Sports - Special Olympics

Individuals with Disabilities Education Act (IDEA)

Report from the Hastings Center about the marketing of NIPT: Bias and Inaccuracy in Marketing Noninvasive Prenatal Tests

College of Charleston

Video with transcript: https://youtu.be/Su9LTiwiyGQ

Laura, a young woman with Down syndrome talks about her life and goals.

 For more information about Down syndrome, see here.

FROM THIS EPISODE:

DEC - Disability Equity Center

WINGS Transition Program

Unified Sports - Special Olympics

Oregon Health & Science University

George Estreich

BOOK:

The Shape of the Eye by George Estreich

EPISODE SUMMARY

In this episode, we meet Josh Burch, a 48-year-old man who was born with Optic Nerve Hypoplasia. Josh talks about the challenges of growing up blind and shares how he navigates a world built for sighted people with the help of technology and his guide dog, Lou. We also hear more from Josh's stepmother, Julie Burch, and learn how they inspired and learned from each other, and how their relationship has changed over time. 

Some learning gems from this episode: Don't pet a guide dog, (he or she needs to focus on guiding). Once out of harness, you can pet the dog; iPhones have an option called "VoiceOver"  which anyone can use; If you meet a blind person, don't assume they need help, ask first; Do not spoon-feed or coddle people who are blind, they are like sighted people and just need more assistance; Support groups are great like Lighthouses for the Blind; Encourage independence and build confidence; Good manners, awareness of posture and exercise matters; Tough love sometimes requires patience but it beats sympathy.

RESOURCES:

• Guiding Eyes for the Blind
• Rehabilitation Center for the Blind and Visually Impaired in Daytona, Florida
• JAWS, Job Access With Speech screen reader tool
• Lighthouses for the Blind - local chapters can be found across the country
• iPhone accessibility features
• Optic Nerve Hypoplasia
• 8 Everyday Items Originally Invented for People With Disabilities

PEOPLE MENTIONED:

• Anne Sullivan

FIND AND FOLLOW JOSH: 

• Josh Burch: [email protected]

FIND AND FOLLOW JULIE:

• Julie's Mindfulness Art Facebook Page
• Julie's Author Facebook page
• Julie's Author Website
• Subscribe to Julie's mailing list for information about upcoming books, nature, recipes, and life with Josh

EPISODE SUMMARY

Julie Burch is an accomplished author (pen name: Juliet Brilee) and stepmother to Josh, who was born blind. Now 48 years old, he lives independently with his seeing-eye dog, Lou. In this episode, Julie shares what it was like to raise a blind child. She introduces us to how she helped Josh spatially map his environment,  and talks about how the brain's map differs for people who have vision versus people with no vision. Julie is a mindfulness coach, and she emphasizes the importance of patience, embracing "failure," using tough love to support independence, and enhancing the senses through mindful practice.

In the next episode, Dr. Blueweiss interviews Josh, who shares his perspective on life in a world built by sighted people.

FIND AND FOLLOW JULIE

Julie's Mindfulness Art Facebook Page
https://www.facebook.com/julieburch4art

Julie's Author Facebook page
https://www.facebook.com/Jbrileeauthor

Julie's Author Website
https://julietbrilee.com/

Subscribe to Julie's mailing list for information about upcoming books, nature, recipes, and life with Josh.
 

EPISODE SUMMARY

In  this episode  Jillian and Audrey, mother and daughter, share their perspectives about dwarfism  and offer helpful advice and wisdom along the way. They  speak about topics ranging from the "sport" of dwarf-tossing to some very enlightening and evolved perspectives on disability, advocacy, decision-making, overcoming challenges, and thriving in a world that does not make it easy to live without being stared at and  photographed without consent. Dwarfism is relatively rare so most of us have never met a little person. In this episode, you will gain a new appreciation for the challenges, gifts, and wisdom of one little person and her mom.

FROM THIS EPISODE

Dwarf Tossing
https://en.wikipedia.org/wiki/Dwarf-tossing

Recent Dinklage/Disney Statements onSnow White and the Seven Dwarfs
https://www.npr.org/2022/01/26/1075761231/peter-dinklage-disney

RESOURCES
Books

Far from the Tree: Parents, Children and the Search for Identity by Andrew Solomon

http://andrewsolomon.com/books/far-from-the-tree/

Thinking Big: The Story of a Young Dwarf , by Susan Kuklin
https://www.amazon.com/Thinking-Big-Story-Young-Dwarf/dp/0688058264

The Missing Piece by Shel Silverstein– (animated)
https://www.youtube.com/watch?v=4gEjCJOzqXc

The Cracked Pot Children’s Story
https://alltimeshortstories.com/life-the-cracked-pot/

Associations

Little People of America
https://www.lpaonline.org
American Association of People with Disabilities
https://www.aapd.com

People

Rebecca Cokely, Ford Foundation Program Officer, U.S. Disability Rights
https://www.fordfoundation.org/about/people/rebecca-cokley/

Judy Heumann, Lifelong Advocate for the rights of disabled people
https://judithheumann.com

FOLLOW AND CONTACT JILLIAN

Podcast:https://podcasts.apple.com/us/podcast/always-looking-up/id1567615385

Instagram:
@jill_ilana, @alwayslookingup.podcast

Website:
https://www.jillianilana.com

Email:
[email protected]

EPISODE SUMMARY

Jillian Curwin, an advocate for dwarfism and disability awareness, is the host of the podcast, “Always Looking Up."  She was born with achondroplasia—a form of dwarfism. On the previous episode of Wisdom Shared, I spoke with her mother, Audrey. You can listen to that episode here: https://wisdom-shared.simplecast.com/episodes/audrey.

In this episode, Jillian talks about what it’s like navigating this world that is primarily designed for average-height people when she herself is a little person. Her commentary on films and TV is eye-opening as she shares her frustrations, solutions, and creative visions. All these ideas can go a long way toward accessibility and inclusion if we as a society change our own perspectives and see life from other points of view.

I learned a lot from speaking with Jillian for this episode, and from speaking with her mom Audrey in my last episode. Most of us take our average height for granted. Jillian helps expand our understanding with humor, intelligence, and most of all, first-hand experience as a little person.

FROM THIS EPISODE

Achondroplasia
Achondroplasia is a form of short-limbed dwarfism. The word achondroplasia literally means "without cartilage formation." https://medlineplus.gov/genetics/condition/achondroplasia/

Jillian’s Disney Project (includes photos)
https://cripplemedia.com/waiting-for-my-disney-princess/

Thinking Big: The Story of a Young Dwarf  Children’s Book
https://www.amazon.com/Thinking-Big-Story-Young-Dwarf/dp/0688058264

Little People, Big World  TV Show
https://go.tlc.com/show/little-people-big-world-tlc

Nancy Volpe Beringer: Fashion Design for Sustainability and Adaptability
https://www.nancyvolpeberinger.com

Little People of America
https://www.lpaonline.org

American Association of People with Disabilities
https://www.aapd.com

Rebecca Cokely, Ford Foundation Program Officer, U.S. Disability Rights
https://www.fordfoundation.org/about/people/rebecca-cokley/

Maria Town, American Association of People with Disabilities, President and CEO
https://www.aapd.com/about/maria-town/

Wigs and Wishes
https://www.wigsandwishes.org

FOLLOW AND CONTACT JILLIAN 

Podcast: https://podcasts.apple.com/us/podcast/always-looking-up/id1567615385

Instagram:
@jill_ilana, @alwayslookingup.podcast

Website:
https://www.jillianilana.com

Email:
 [email protected]

EPISODE SUMMARY

Audrey Curwin is the mother of two adult children, Jillian and Benjamin. Audrey was the Assistant Prosecutor in Gloucester County, New Jersey, supervising the domestic violence and sexual assault unit until her retirement in 2006. She was married for 23 years to Michael Curwin, and together, they were the only husband and wife team of first assistant prosecutors in New Jersey.  

Audrey does not shy away from calling out what she considers unacceptable attitudes and common preconceptions. She delves into her experience of raising her eldest child, Jillian, who was born with achondroplasia, which is a form of dwarfism. Audrey, her late husband, Michael, and their son, Ben were all born average height. Jillian's diagnosis brought with it a lot of unknowns and fears and opened a window into the world of labels, accessibility, advocacy, alternate perspectives, and unique challenges. Michael and Audrey were always deeply committed to the idea that Jillian should not be defined by her stature, disability, or diagnosis, but by who she was as a human being

Today, Jillian is a strong, witty, intelligent, fashionable, creative advocate. She is host of the podcast, “Always Looking Up.” In this episode, we will hear from Audrey how words matter, the many ways that the entertainment industry has marginalized little people, and how people diagnosed with dwarfism are often left out of the accessibility formula.

FROM THIS EPISODE

Osteogenesis Imperfecta 
Osteogenesis imperfecta (OI) is an inherited (genetic) bone disorder that is present at birth. It is also known as brittle bone disease. 

https://www.hopkinsmedicine.org/health/conditions-and-diseases/osteogenesis-imperfecta

Skeletal Displaysia
Skeletal dysplasia is the medical term for a group of about 400 conditions that affect bone development, neurological function, and cartilage growth, including its most common form, achondroplasia.

https://www.hopkinsmedicine.org/health/conditions-and-diseases/skeletal-dysplasia

Achondroplasia
Achondroplasia is a form of short-limbed dwarfism. The word achondroplasia literally means "without cartilage formation." https://medlineplus.gov/genetics/condition/achondroplasia/

Little People of America
https://www.lpaonline.org

The Missing Piece – Animated Shel Silverstein:
https://www.youtube.com/watch?v=4gEjCJOzqXc

The Cracked Pot Children’s Story
https://alltimeshortstories.com/life-the-cracked-pot/

Crip Camp: The Film
https://www.youtube.com/watch?v=XRrIs22plz0

Crip Camp: The Revolution
https://cripcamp.com

FINDING JILLIAN 

Podcast: https://podcasts.apple.com/us/podcast/always-looking-up/id1567615385

Instagram:@jill_ilana, @alwayslookingup.podcast

Website:https://www.jillianilana.com

Email:[email protected]

EPISODE SUMMARY

In this 14th episode of Wisdom Shared, Dr. Carole Blueweiss shares her own wisdom in an interview by Kathy Cocks for her podcast, Knowledge for Caregivers. In the episode, Carole brings her expertise as a Doctor of Physical Therapy to offer thoughts on movement, exercise, and wellness for older patients discharged from the hospital  who are being cared for by family or home health aides. Carole also shares about life with her mother who has experienced challenges as she ages. As her daughter, Carole says that she has witnessed many changes, "and yet she inspires me every day." Dr. Blueweiss reframes growing older as a blessing, despite the unpredictable challenges that often arise. And she believes that there is more we can control as we age than we are led to believe. In this episode, learn why we owe it to ourselves to become more aware of the changing bodies every day and we learn from Kathy, in her amazing podcast, Knowledge for Caregivers, how encouragement and support can go a long way to helping our loved ones as they age with compassion and dignity.

Kathy Cocks, Podcaster and Interviewer
Kathy has been a registered nurse for over 30 years, working in intensive care, with disabled school children, dialysis, and now in the community with the geriatric population. She works with families and their loved ones to find the right solutions for their situation and maintains an active network of partners to help navigate the eldercare journey.

Knowledge for Caregivers Podcast
https://www.kathysconsulting.com/podcast

Contact Kathy:
Website: https://www.kathysconsulting.com
Email: [email protected]

School of Life Book Collection:
https://www.theschooloflife.com

Contact Carole Blueweiss:
Website: caroleblueweiss.com
Email: [email protected]

EPISODE SUMMARY

Dr. Blueweiss speaks with Nafiz Cekirge, a father in central New Jersey who  speaks candidly about the impact that anorexia has had on his oldest daughter and on the family. There are a lot of unknowns to do with eating disorders and Nafiz helps us to understand the complexity of anorexia  and the importance of listening to your instincts if you suspect your child is struggling.

You are welcome to share the wisdom from this episode. Please be sure to credit: “Ep. 13, Anorexia: A Father's Perspective", Courtesy of Wisdom Shared Podcast with Carole Blueweiss.”

Mentioned in this Episode

TREATMENTS & TREATMENT PROGRAMS

Family-Based Treatment

A type of therapy which involves all family members in treatment of the individual with the disorder. Currently considered the gold standard approach for addressing anorexia nervosa. Views food as medicine, and places responsibility for all meal decisions, shopping, and preparation with caretaker in early phases of this modality. 
https://www.feast-ed.org/what-is-family-based-treatment/

FAMILY THERAPIST

Amy Begel

https://www.amybegel.com/

ADOLESCENT MEDICINE EATING DISORDER SPECIALIST

Dr. Jennifer Northridge

https://doctors.hackensackmeridianhealth.org/provider/Jennifer+L.+Northridge/1317171

TREATMENT FACILITIES MENTIONED IN THIS EPISODE

Princeton Center for Eating Disorders at Penn Medicine

https://www.princetonhcs.org/care-services/center-for-eating-disorders-care

Hidden River, Chester NJ

https://hiddenriverhealing.com

LEVELS OF CARE

Inpatient: patient acutely ill, and requires medical stabilization.

Residential: highly structured live-in environment for medically stable patients; offers 24X7 support.

Partial Hospitalization (PHP): a step-down treatment-based day program; offers recovery-based therapies and support along with opportunities to practice recovery outside of program.

Intensive Outpatient (IOP): flexible treatment program; assumes patient is able to participate in school, work, and so on. Treatment team (therapist, nutritionist) providing regular support.

FOLLOW IVANA
Facebook: @mauimovementlessons
LinkedIn: https://www.linkedin.com/in/ivana-gadient-8b21a536/

CONTACT VERENA
email: [email protected]

RESOURCES recommended by Ivana

"Wheelchairs are a HUGE conversation. It is best to create a trusted, knowledgable and openminded team that you hand pick to help you successfully seat your loved one"
https://aci.health.nsw.gov.au/networks/spinal-cord-injury/spinal-seating/module-6/wheelchair-seating-a-complex-puzzle

TALK TOOLS: for finding a therapist, and continuing education.
https://talktools.com
 

FEEDING MATTERS: Parent Support Network
"Feeding Matters is a great organization, started by two moms. They pursued chasing the CDC for a stand alone diagnosis and code called PFD pediatric feeding disorder. They dedicated five years to this and it came to pass this year. They have a lot of free resources and supports for parents."
https://www.feedingmatters.org
 

JABBERMOUTHS: Speech, Oral-Motor, and Feeding Therapy
"This is Jewel's latest SLP who is amazing!  I highly recommend Jenn, she is licensed in HI and AZ and does Zoom lessons. Highly skilled, highly educated, great instinct, grew up around disability and very comfortable around our families. She can teach premature babies to latch on to both breast and bottle!"
https://jabbermouths.com/

THERAPISTS AND THERAPIES in episode

ARLENE WARD is the owner of Genesis Rehabilitation Ltd., a vocational rehabilitation and disability management company based in Nanaimo, BC. Their goal is to keep workers at work. She is also an Adjunct Professor at the University of Northern BC Canada.
https://www.linkedin.com/in/arleneatgenesis/

JUDITH HEUMANN is an internationally recognized disability advocate who served in the Clinton and Obama Administration and was a Senior Fellow at the Ford Foundation.
https://judithheumann.com

KAREN ERICKSON, PH.D. is the Director of the Center for Literacy and Disability Studies, a Professor in the Division of Speech and Hearing Sciences, and the Yoder Distinguished Professor in the Department of Allied Health Sciences, School of Medicine at the University of North Carolina at Chapel Hill.
https://www.med.unc.edu/ahs/clds/directory/karen-erickson/

JENNIFER BUCK, MA, CCC-SLP, owner of Jabbermouths Therapy, is a licensed and certified Speech-Language Pathologist with over a decade of experience in working with individuals with disabilities. 
https://jabbermouths.com

NEUROMOVEMENT THERAPY: Anat Baniel and NeuroMovement® (ABMN®)
Anat Baniel, a student of Moshe Feldenkrais, developed and evolved NeuroMovement® from 30+ years of experience with thousands of clients using practical applications of brain plasticity principles. The Anat Baniel Method® approach is founded in neuroscience and the biodynamics of the human body, and utilizes movement and the 9 Essentials to create conditions for the brain to wake up and upgrade its own functioning.
Read more about the Nine Essentials:
https://www.anatbanielmethod.com/about/neuromovement/neuromovement-and-9-essentials

HIPPOTHERAPY: an approach to physical therapy where the patient rides horses in order to address physical health.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5175116/

AYSO VIP: provides a quality soccer experience for individuals whose physical or mental disabilities.
https://ayso.org/play/vip/

PRODUCTS

KINDERPACK produces baby carriers that are small-batch made, exclusively in the USA in sizes to fit infants, toddlers, and even preschool sized children.
https://mykinderpack.com