Living Without Egos

living without egos“Living With Quiggles” has covered a wide range of stigma issues such as the impact of staring; how language stigmatizes; the decision to attempt to “pass” in society by keeping a health challenge or disability hidden; the reactions when the birth of a baby brings an unexpected Quiggle into a family; and many other subtle issues of stigma in healthcare.

For the most part we’ve explored stigmatization as it applies to strangers who connect briefly as they stumble upon one another while going about their daily lives.  But how does one handle stigma when the dynamics become more personal and the relationships closer? How do our egos interfere?Continue reading

Bitter or Better?

NBA basketball

Bob Love was an NBA basketball player who lives with a Quiggle.

Most of us vividly remember our very first jobs even though they weren’t likely to have been in the proverbial mail room.  My first was walking beans, unless of course you count the Christmas when I was five and started wrapping Christmas purchases sold in my father’s small town men’s clothing store.  The pay at the time was a daily trip to see Santa in his special little house which was set up each Christmastime on the lawn of the court house.  Since no dollars changed hands, I think that walking beans really qualifies as my first job.

For you city folk, walking beans means being up long before the sun, rushing to a designated pick-up spot in town, riding in the back of an old pick-up farm truck to the fields where you will then spend 14 hour days walking  acres and acres of rows of beans, cultivating the soil, and removing the invading corn plants.  “Blazing sun” and “dog days of August” took on an entirely new meaning within a day of starting my first job.  The compensation was bragging rights at school in the fall that you hadn’t whimped out and, if memory serves, $.50 an hour.

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Living with Spina Bifida

My Story – Submitted by: Anonymous

I was born with spina bifida. I was also one of the lucky ones – I could walk, even run, and never suffered from hydroencephalitis (water on the brain). I am also urinary and fecal incontinent.

At the age of 3 years, I had a urinary diversion surgery called an illial [ileal] loop done. I wore a urinary bag until I was 18. Kids can be cruel. In addition to the normal teasing that goes with growing up, I also had to deal with being shunned due to the bag springing leaks, as well as regular accidents from the bowel incontinence. You can probably imagine how bad things got. When I was 18, an artificial sphincter was installed on my bladder – I still had to self-catheterize to pee, but at least I didn’t have to wear that damned bag.

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2015 John J. Humpal Award Presented to Kaoru Nishimura of Japan

Kaoru Nishimura

Ms. Kaoru Nishimura, RN, received the 2015 John J. Humpal Award.

The Simon Foundation for Continence recently presented the 2015 John J. Humpal Award to Kaoru Nishimura, RN, the Founder of the Japan Continence Action Society (Tokyo, Japan). The award was presented at the Foundation’s fifth biennial Innovating for Continence: The Engineering Challenge conference, hosted April 15-17 at the Millennium Knickerbocker Hotel in Chicago’s city center.

Chicago, IL (PRWEB)  May 26, 2015 — Professor Christine Norton, RN, PhD, Honorary President of the Innovating for Continence Conference 2015 and a leading authority on bowel/fecal incontinence, presented Ms. Nishimura with the John J. Humpal Award at the Foundation’s conference dinner. The fifth meeting in the Innovating for Continence series attracted delegates from around the world, including participants from Australia, Germany, Canada, the UK, Sweden, Ireland, the Netherlands, Japan, and throughout the USA.Continue reading

Poster Awards Presented at the 2015 International Innovating for Continence Conference

Three poster awards were presented by The Simon Foundation for Continence to posters authors at their fifth biennial conference in Chicago, reflecting excellent and varied research in this challenging medical field.

Chicago, Illinois (PRWEB) May 06, 2015

The poster entitled “The Stigma Associated with Urinary Continence: The Impacts on Self-Perception for Older Women,” by lead author Kenneth Southall (McGill University, Montreal, Quebec, Canada), was awarded first place at the April 15-17, 2015 international conference Innovating for Continence: The Engineering Challenge. Continue reading

Rick Rader, MD, Defeating Stigma in Healthcare Award Recipient for 2013

Rick Rader, MD

Dr. Rick Rader accepting the Defeating Stigma in Healthcare Award

Chicago, IL, May 11, 2013 –(PR.com)– The Simon Foundation for Continence recently announced Rick Rader, MD, as the 2013 Defeating Stigma in Healthcare Award recipient. Dr. Rader is the Director of the Morton J. Kent Habilitation Center at the Orange Grove Center (Chattanooga, TN), a nationally known community agency supporting the needs of individuals with intellectual and developmental disabilities.Continue reading

Learning to Dance in the Rain

Man woman dancingAdjusting to a stigmatizing health condition happens, in all likelihood, in a series of phases perhaps not unlike those described by Elizabeth Kubler-Ross when she put forth her ideas about the process of death and dying.  Goffman in his study of stigma suggests that there indeed is such a process: “the stigmatized individual can come to feel that he should be above passing, that if he accepts himself and respects himself he will feel no need to conceal his failing”.  However, Goffman then goes on to write that many people (who may even be priding themselves on having made the adjustment to their stigmatizing condition) aren’t even aware that they may be doing something called covering.

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Turning Cartwheels

Cartwheel

Doing cartwheels!

One of the best docs in my world, both as a friend and as a partner (we are co-founders of Label Me Not – a movement to defeat stigma in healthcare) hit a milestone birthday this summer.  He was definitely not pleased about this marker and, as he explained to me, he was feeling the self-stigmatization of old age.  Now mind you (as the Brits would say) this is a guy who attended prestigious medical schools; is internationally known for his work as a medical futurist who is helping to chart the future healthcare needs of individuals with developmental disabilities; and an unlikely candidate to be feeling the stigma of aging.  He is someone you’d think was just too busy to allow a birthday to throw him off track.Continue reading

When Stigma Kills

bloody handYou wake up one morning and suddenly you find yourself questioning why you have been working so hard fighting for a cause, when maybe you’ve just really been tilting at windmills.  You’re tired, burnt out, feeling you haven’t even begun to make a difference, and you can’t help but think of the lost income if you’d followed another career path; the time not spent with family or vacations foregone  – you also see the sands of time slipping away – and suddenly you go nuts. Some might call it just the usual midlife crisis – but for those who have passionately fought for a cause I think it’s different – something a small red sports car just won’t fix.Continue reading