Jennifer Johannesen
Author, speaker, blogger | Patient Advocate
Toronto, ON, CANADA
My talks are frank and unsentimental, yet lighthearted and engaging. No lecturing! Authentic patient experience illuminated through stories.
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Biography
Jennifer Johannesen is a speaker, author, blogger and patient advocate whose main themes include the challenges and ethics of substitute decision-making in healthcare. Her expertise was earned through experience: her 12 year old son, Owen, passed away in October 2010 after a lifetime of undiagnosed, severe multiple disabilities.
Jennifer speaks to large and small audiences comprised of healthcare and education professionals, parents of children with disabilities and patient groups. Her engagements include numerous talks for The Hospital for Sick Children, the University of Toronto and Holland Bloorview Kids Rehabilitation Hospital.
Her blog and book are available at NoOrdinaryBoy.com.
Industry Expertise (7)
Health Care - Facilities
Education/Learning
Social Services
Mental Health Care
Writing and Editing
Health Care - Services
Health Care - Providers
Areas of Expertise (4)
Disability Advocacy
Ethics
Parenting Children With Special Needs
Patient Advocacy
Accomplishments (2)
Principal - Low to the Ground Consulting (professional)
Low to the Ground Consulting provides low cost, high value marketing, website and social media solutions for small businesses, entrepreneurs and services professionals.
Author (professional)
Twelve-year-old Owen Turney died on October 24th, 2010, of unknown causes. No Ordinary Boy: The Life and Death of Owen Turney is Jennifer Johannesen’s extraordinary story of her profoundly disabled son, his family, his caregivers and his doctors. It is a sharply evocative, sometimes humorous, never sentimental chronicle—not only of perpetual crisis management, crushing disappointments and dashed hopes, but also one of love, spiritual growth, self-understanding, acceptance and maturity.
Education (1)
Ryerson University: Bachelor of Applied Arts, Administration and Information Management 1994
Links (4)
Testimonials (3)
Thom Ernst, TV Host, Saturday Night at the Movies |
"...a balanced, sometimes difficult, often amusing account of a real young man told, with an almost unbiased honesty, by the one woman who knew him best. Jennifer avoids the kind of finger-waving judgment calls writers with less skill tend to saddle on the ignorant, the curious and the well-meaning. Her observations are that of a young woman who lives in a world of contradictions, complications and revelations, including her own."
Dr. Golda Milo-Manson, Vice-President Medicine and Academic Affairs, Holland Bloorview Kids Rehabilitation Hospital Associate Professor, Department of Paediatrics, University of Toronto |
"No Ordinary Boy is a must read for all health professionals. It reminds us why we do what we do—and inspires us to do better."
Avis Favaro, On-camera reporter, CTV News |
"...found it moving and inspirational. It may offer support and a new perspective for parents and doctors dealing with these especially vulnerable children. It was penned by a courageous and yet forthright mother who wants to help others learn the lessons that Owen’s short life, offered."
Event Appearances (9)
Negotiating the Gray Zone: Ethical Issues in Health Care Decision Making
National Developmental Pediatric Update Conference Holland Bloorview Kids Rehabilitation Hospital, Toronto
2011-11-11
Panelist, Navigating Contentious Cases in the Public Eye: A Working Symposium
Navigating Contentious Cases in the Public Eye: A Working Symposium The Hospital for Sick Children (Toronto),
2011-10-11
Ethics in Healthcare Decision-making
Grand Rounds Holland Bloorview Kids Rehabilitation Hospital
2012-04-11
Redefine success: Decide for yourself what really matters
Holland Bloorview Bloom Speaker Series Toronto, Ontario
2012-02-15
Author Appearance and Conversation
Silver Creek Preschool Professional Development Day Toronto, Ontario
2012-02-09
CBC Blue Sky, featured guest interview and call-in show
Blue Sky CBC Radio One, Saskatchewan
2012-02-06
CBC Alberta at Noon, featured guest interview and call-in show
Alberta at Noon CBC Radio One, Alberta
2012-02-06
CBC Ontario Today, featured guest interview and call-in show
Ontario Today with Rita Celli CBC Radio One
2012-01-19
Presenter, Medical Student Program
Medical Student Home-visiting Program Holland Bloorview Kids Rehabilitation Hospital
2012-01-11
Sample Talks (4)
Ethics in Healthcare Decision-making
Ethics are often seen as an instrument to remedy conflict, but are in fact at play in every healthcare decision made in the pediatric healthcare setting. Jennifer discusses how all decision-makers and advisors, parents and clinicians alike, ought to consider more than just the clinical outcomes when making decisions - they should also identify personal motivations, family and cultural influences and other environmental factors--all lenses through which we filter and distort information.
Redefine success: Decide for yourself what really matters
No Ordinary Boy author Jennifer Johannesen talks about society’s expectations for constant improvement, how this plays into therapy for children with disabilities, and how families can be left shouldering more burden than they want or can handle. Jennifer explores how institutions, clinicians and parents alike contribute to the increasing pressures placed on families and shares her experiences as she leads a discussion on ways to redefine ‘success.’
A Patient/Parent Narrative and Perspective
Jennifer often speaks to new and experienced professionals in orientation, lunch-and-learn and professional development settings. Her 'Patient Perspective' talks are geared to the specific audience and healthcare or therapy-related discipline. Themes include experiences in healthcare settings, receiving bad news, communication styles and decision-making.
'Fake Work'
The over-administration of the lives of families with children with special needs not only threatens to completely snow them under with paperwork, but also creates an unnecessarily stressful environment of constant monitoring, surveillance, reporting, and goal-setting. Jennifer presents theories as to why these conditions exist and shares how she opted for an alternate route for her family.
Style
Availability
- Keynote
- Panelist
- Workshop Leader
- Author Appearance
Social