Challenging Health Stigma

Introduction

In 2003, The Simon Foundation held the 1st International Conference on Stigma in Healthcare. Since that event, Ms. Cheryl B. Gartley (President and Founder of the Foundation) has been very involved on several fronts in the Anti-Stigma campaign. One of her endeavors following the conference was a column written on the website Health Central (http://www.healthcentral.com). This column was called “Living with Quiggles.” Following the definitions below are several of the articles she has written for the column.

Stigma:

1) The recognition of differences based on some distinguishing characteristic or mark;
2) A consequent devaluation of the person

Quiggles:

A made-up term (by famous sociologist, Erving Goffman) to identify all of the variations and differences of the human body that occur either from birth, daily wear and tear, accident, or illness, which can be and will be stigmatized.

An Effective Response to the Impact of Health Stigma Is Within Our Reach

We’re experiencing a renaissance of civil rights in this country. A woman has run for President of the United States on a major party ticket. People can marry whomever they choose. The country is caught up in a retelling of the story of our founding fathers – in a hip-hop musical written by a Latino and featuring a colorblind cast.

Major shifts indeed. And we plan to ignite yet another – for people of every age, gender, and life situation. For people who have difficulty walking, seeing, hearing, or comprehending the world around them, and millions more who cope with health conditions, seen and unseen, that redefine their life options. Disability and other health challenges have many causes – from accident, to disease, to genetic chance. The result is often a daily test of individual resolve and strength. But along with these solitary struggles, there is one common to all: stigma.Continue reading→

When It Happens a Hundred Plus Times a Year, You Tend to Assume

One of my colleagues, a life coach, says if you are going to assume an outcome, then choose the assumption that makes you the happiest. It’s some of the best advice I’ve ever had…I fail miserably at it!

The problem is, when it happens a hundred plus times a year, my personal version of “stranger danger,” I tend to assume it is about to happen again whenever I am using crutches, sporting a visible difference in the form of a leg brace, and a stranger approaches.Continue reading→

Central Street America

It’s funny what can bring you hope, sometimes it can be the simplest thing and yesterday it was, with the bonus of it happening on a picture perfect fall day.

Yes, Fall is finally here in the Midwest, the squirrels are crazy busy, school is back in session, and it is raining leaves! It’s once again that time of year when if you don’t have children to pick up after school you stay off the roads when the yellow buses swarm…stopping frequently (and holding up traffic) while their charges finally spill from the bus!

But sometimes household or work-related schedules must be met and even sans kids, you find yourself caught up in the after school mayhem. While it Continue reading→

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?

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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Learning to Dance in the Rain

Adjusting 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

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

You 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→

Harriet McBryde Johnson

Recently America’s largest minority (people with disabilities) lost one of its most committed advocates, Harriet McBryde Johnson. I got to know Harriet both from reading her articles and book (Too Late to Die Young), and from a series of telephone conversations I had with her when she helped the Foundation I run with suggestions for a conference on Defeating Stigma in Healthcare. She was right in the middle of a media deluge resulting from an article she wrote for Parade Magazine when I called her, and yet she found time to promptly return a stranger’s message and immediately offer help.

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Let’s Go Kiss a Cow!

The cost stigma extracts from those who are disqualified from full social acceptance never ceases to amaze me. A huge part of the costs that surround stigma management is the effort put into passing, the term used by Dr. Goffman to describe the behavior of individuals who have a stigmatized health condition or disability which they can (although only with substantial effort) keep hidden. Goffman states that: “Because of the great rewards in being considered normal, almost all persons who are in a position to pass will do so on some occasion by intent.” There seem to be many creative ways that people discover to pass, probably many more then there are health conditions people are trying to cover up. Following are examples of these efforts to pass from the book Stigma: Notes On The Management of Spoiled Identity.

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