b'ing stigma-free

community_cartoon-pplI’ve lived with HIV for more than 35 years, including through a period in the mid 90s when I was visibly wasted, weighing only 124 pounds (I am 6’ 1”), and had purple Kaposi sarcoma lesions all over my face and body. When the lesions were the worst little kids would point at me when I walked down the street, dogs barked at me and passersby studiously avoided eye contact.

I start with this story to make the point that I know something about HIV stigma.

I believe that HIV stigma is worse today than it has ever been. Many people who do not have HIV find that statement startling. They remember, or have seen on TV or in film, the days when one had to wear a spacesuit to visit a person with HIV in the hospital; when people were afraid to eat in a restaurant with a gay waiter; wouldn’t touch people with HIV and in general were terrified of us.

We know so much more about the routes and risks of transmission today, so those fears have somewhat lessened. Why then am I asserting that stigma is worse today?

The manifestation of stigma most conscious to those who do not have HIV is the fear of casual contagion. But to those of us who experience the stigma first-hand, HIV stigma is more nuanced, and has evolved over the years.

To us, stigma is about others making a moral judgment about our worth when they find out we have HIV: pre-judging, blaming, marginalizing, or “othering” us. And perhaps most important, it is about self-stigmatization, also called internalized stigma. By these measures stigma has gotten worse, not better.

Stigma is about others making a moral judgment about our worth

When effective combination therapy was introduced in the mid 90s, profoundly changing what it meant to have HIV, many thought HIV stigma would go away as we treated our way out of the epidemic. It didn’t work out that way.

Prior to effective treatment, almost everyone—regardless of whatever religious or moral problems they might have had with homosexuality or injection drug use or commercial sex work or promiscuity—had some degree of human compassion for others who were suffering and likely to die, possibly a horrific and painful death. We were viewed through a lens of pity.

Effective therapy changed that. If we were going to be living longer, that meant we were going to be around longer to potentially infect others. The public health and criminal justice systems started defining us as viral vectors, potential infectors, an inherently dangerous population that needed to be sought out, identified, tracked down, tested, reported, listed, monitored, regulated and, increasingly criminalized.

The media and celebrities are complicit in this as well. In the 80s and much of the 90s, there was a steady flow of warm fuzzy human interest stories, about people with AIDS still valiantly struggling to raise their families and live their lives, while managing a life-threatening illness that had no cure. Inspiring examples of the triumph of the human spirit provoked an empathetic response from the public. Celebrities made support for people with AIDS fashionable.

Today, most of those celebrities have moved on to more trendy causes. The media, when they do reference a specific HIV+ individual, it is more often in a criminal context: an “AIDS Monster” or “AIDS predator”. When someone with HIV is accused of not disclosing their HIV status before having sex, or of scratching, biting or spitting, the media coverage is typically hysterical and frequently inaccurate.

Empowerment

From the earliest days of the epidemic until the late 90s and early 2000s, many people living with HIV (PLHIV) in the U.S.—probably a majority—participated in some type of support group or network of PLHIV.

When we were diagnosed, generally the first recommendation we got wasn’t to go to a doctor, but to get together with others with HIV so we could learn how create a supportive environment around ourselves to withstand the risky consequences of disclosure. Support groups and networks—other PLHIV—are where our questions were answered, where we made new friends and began to rebuild lives that were turned upside down with the news of our HIV positive test.

Today, those support groups are almost entirely gone and the networks lost funding and support. Now some of us are in the process of rebuilding those resources because if we want to fight stigma, we need to focus on empowering the stigmatized.

That starts with getting people with HIV together and enabling us to define our own agenda rather than having others define an agenda for us. Networks allow us to choose our own leaders and hold them accountable, rather than having people with HIV speaking for us who have been selected by others. And importantly, networks enable PLHIV to speak with a collective voice.

In 1983 a small, courageous group of people with AIDS wrote The Denver Principles, now considered an iconic document. Written at a time of great social fear and political hysteria, they spelled out the rights and responsibilities of people with AIDS and those who care for or provide services to us.

They began the document by taking control of the language, pioneering “people first” language:

“We condemn attempts to label us as “victims,” a term that implies defeat, and we are only occasionally “patients,” a term that implies passivity, helplessness, and dependence upon the care of others. We are “People With AIDS.”

They also demanded the right to “be involved at every level of decision-making and, specifically, to serve on the boards of directors of provider organizations.”

The fight against the epidemic must include
the people who have the disease as equal partners in the battle

In the history of humankind, never before had sufferers of a disease united to assert such rights. The Denver Principles expressed a fundamental truth: to be successful, the fight against the epidemic must include the people who have the disease as equal partners in the battle. It was a powerful and radical concept.

That model empowered our community to create a massive AIDS healthcare service delivery system, from scratch, in a remarkably short period of time under difficult circumstances. It empowered us to create our own media, buyers clubs, research organizations, all of which were also tools to combat stigma.

When others would not work at our side, want us to live in their homes, touch their dishes, use their towels or hold their children, it wasn’t the voice of the government or healthcare establishment or media that educated them, it was our empowered voice.

When the nation’s political leadership failed to address the emerging crisis—and was content to watch us die—our collective empowerment is what gave us the political muscle to force change and expedite the development of effective treatment.

But today, empowerment has become a slogan rather than a system. Our political muscle has atrophied and a diagnosis is lonelier than ever. We long for the broader loving HIV and GLBT community that once embraced the newly diagnosed with love, accepted the epidemic as a collective responsibility and assured us “we will get through this together.”

There’s no secret to reducing HIV stigma – all we have to do is look at how we did in the first half of the epidemic. The answers are right there if only the AIDS establishment would support their implementation.

 

sean-strub-head-shot_smallSean Strub is the founder of POZ Magazine, executive director of the Sero Project, a US-based network of people with HIV combating criminalization and is the author of Body Counts: A Memoir of Politics, Sex, AIDS, and Survival (Scribner 2014). A longtime activist and HIV survivor, he was the first openly HIV positive person to run for the U.S. Congress, produced the off-Broadway hit The Night Larry Kramer Kissed Me and from 2010-2012 co-chaired the North American affiliate of the Global Network of People Living with HIV (GNP+/NA).


Breast cancer ribbonI had a mastectomy when I was 29 years old. The year was 1972, the height of the sexual revolution. I was a single career woman living in New York City and spending summers frolicking on the beach in the tony Hamptons. It was also a time when the “C” word was whispered behind closed doors. People with cancer were pariahs, sometimes fired or not hired because of it.

After my gynecologist told me the tiny pea sized lump in my breast was nothing to worry about, I got a second opinion from Strang Cancer Prevention Center. “You need a biopsy done in the hospital,” the doctor said, “not a needle biopsy which can be unreliable.”

The year was 1972, a time when the “C” word was whispered.

The biopsy was positive. Two weeks later, I had a mastectomy. Afterwards, I felt ugly, odd, freaky. These are the words that lived inside my head as I tried to navigate the social scene. People in their twenties and thirties were looking for physical perfection and I was damaged. At some point, I’d have to tell that there was only one breast where there should have been two.

Jump ahead to 2012. My husband and I attend a fundraiser for Moms Who Kick, Inc., an organization that supports breast cancer research and women’s health. This year they produce a calendar with twelve women in excellent physical condition who have been touched by cancer. The event, a fashion show, features the women appearing in the calendar. Our niece, Jen, is Miss September.

The women strut like proud peacocks on the catwalk, vogue for the audience, then turn for the return trip up the runway. They wear anything decollete – strapless, backless, and plunging – all sexy fashions that belie that most are missing at least one of their original breasts. They flaunt their bodies like beauty queens. It seems breast cancer is the new ‘in thing,’ taking the place of the latest Louis Vuitton handbag.

When I had breast cancer it was a lonely disease. 

When I had breast cancer it was a lonely disease. Doctors and patients did not talk about the operation’s psychological and emotional toll. And, there were no support groups for women to attend.

The breast doctor who looked at my slides from the biopsy said “it is the best kind of cancer to have.” In today’s world, that would mean having a lumpectomy for carcinoma in situ (CIS), a type of contained cancer that has not spread to other cells. The response to breast cancer back then was as radical as the radical he prescribed. I could have had a less invasive procedure called a simple mastectomy, but it was so new there were no survival statistics. I opted for the procedure that would grant me the longest life.

Today, depending on the diagnosis, women have a choice of a lumpectomy which removes a tumor and extra tissue or a mastectomy, most of which are not as severe as the one I had.

It seems breast cancer is the new ‘in thing,’ taking the place of the latest Louis Vuitton handbag.

Forty four years ago, reconstructive surgery was not available so a woman who had a mastectomy was left with one breast and a prosthesis that fooled the world into thinking she had two. A woman today can come out of anesthesia with a new breast in place, be it an implant or other method of reconstruction such as using tissue and muscle from another part of her body. She does not have to look in the mirror and see nothing where there should be a mound of lovely soft sensitive flesh.

Still cancer is cancer. Hearing the doctor say those three little words, “You have cancer,” is as terrifying today as it was then.

I envy Jen and her forty-something comrades. Aside from benefitting from the advances made in treating breast cancer, they have a cancer community. They can talk about whether they need a single or a double, chemo or radiation, how their husbands and kids are coping, but most of all, they can talk about being scared.

 

Leslie Jay-Gould ’s career in public relations ironically included working for Penthouse magazine, along with stints in the film industry. Her work has appeared in The New York Times and as an Editors’ Pick on Open Salon. She is a 44-year cancer survivor and lives in Somers, NY with her husband.

 

 

 

 

 

 

 

 

 


A sure sign that there is a stigma associated with Alzheimer’s disease is people’s hesitancy to talk about it, acknowledge its signs and symptoms, and their minimization of the cognitive issues. As a practicing neurologist who sees patients in the office setting and in their homes, I often hear the comment “She has a little bit of memory issues, but nothing really bad.” As a dementia specialist, I consider this a potential red flag. Further questioning frequently leads me to think that we have a dementing illness occurring.

DenialAlz talk boxes 2

The hesitancy to discuss and acknowledge the issues associated with Alzheimer’s disease amplifies in persons under the age of 65 who have Early Onset Alzheimer’s Disease (EOAD). In a survey conducted by Alzheimer’s Disease International, 28% of respondents said that they feel discounted since disclosing their diagnosis and 24% said that others lacked understanding.[1] Many lose their jobs, and their friends.

In these cases, not only does the person “not look like” a typical older adult with Alzheimer’s Disease, the complaints are often brushed off as a result of having too much stress, emotional issues, and of course, hormonal imbalances. Hormones (peri and post-menopausal symptoms) in women, are often dealt with initially, and all types of complaints are attributed to them. However, the memory concerns, lack of concentration and word finding issues often associated with EOAD are not adequately addressed.

Many healthcare providers are hesitant to consider EOAD in young persons because of the branding or stigma it would induce among the patients’ friends, families and social networks. Three factors influence its stigma and lend this disease to go under-recognized in the healthcare community:

  • – Its occurrence at a younger age (compared to the typical diagnosis over 65 years)
  • – There is no cure
  • – No medication has demonstrated a persistent cognitive beneficial effect over a long period of time.

Now What?

Of course the other issue that has to be talked about when there is a high stigma factor is the professional service rendered by the physician. I call this the Now What? moment:

  • Now what are we going to do?
  • Now what action plans or treatment plans are we going to suggest and order?

This is crucial when dealing with diseases like Alzheimer’s disease, be it late or early onset.

The lack of having a Now What plan actually increases the stigma for this disease, as it implies that no one really knows what to do. And yet, we DO, know what to do! Healthcare providers can:

  • – Discuss what areas are of the greatest importance to families: social support, in-home services, treatments to maintain functioning at work for as long as possible.
  • – Recommend, write a prescription for, and assist in obtaining these services.
  • – Discuss medications that we consider using; outline why we are recommending them; and explain what we hope they will do regarding symptom management.
  • – Encourage participation in clinical trials. Clinical trial participation helps patients and families feel engaged; lends social and educational support to the individual; and progresses research to better understand and eventually cure the disease.
  • – Actively encourage involvement with other groups of other people who have the disease and discuss how these interactions can be supportive.

In order to reduce stigma with this disease, we need to think about the Now What. Anything short of this will not alleviate the prevalence of negative perceptions, isolation and sense of low self-worth and ability so many people with Alzheimer’s disease, young and old, experience.

So my question is: What is your Now What?

 

[1] Batsch NL, Mittelman MS.  World Alzheimer Report 2012: Overcoming the stigma of dementia. (2012.) Alzheimer’s Disease International.

 

Aggarwal_NeelumNeelum T. Aggarwal, MD, is a population health neurologist and clinical researcher specializing in longevity and aging with Rush University Medical Center in Chicago, and she is co-leader of the Rush Alzheimer’s Disease Center Clinical Core. She obtained her medical degree from the Rosalind Franklin University Chicago Medical School, completed her neurology residency at Henry Ford Hospital in Detroit, Michigan, and completed an aging and neurodegenerative disorders fellowship at the Rush Alzheimer’s Disease Center.

Dr. Aggarwal was a panelist discussing the roles of art therapy in the lives of persons with Alzheimer’s disease at the Bringing Art to Life digital exhibit at the National Museum of Medicine in Chicago. Questions about using art therapy as an aid to decrease the sense of social isolation, feelings of disconnection from loved ones, and a lack of empathy associated with the disease got her thinking about attitudes associated with Alzheimer’s disease, and were the inspiration behind this article.

Dr. Aggarwal is the first chief diversity officer for the American Medical Women’s Association – the oldest women’s physician medical organization in the United States – and is responsible for defining national diversity and inclusion objectives, enhancing the diversity of AMWA’s leadership team, and leading AMWA’s Diversity and Inclusion Section and resource groups. She previously served two terms on the AMWA Board of Directors, and actively advanced inclusion initiatives in her role as co-chair of the Mentoring Task Force.


As I began to think about writing a piece on the issue of stigma as it relates to Alzheimer’s disease, it occurred to me: I needed to clean the refrigerator. Immediately. Then there was that bed-making chore, complete a household search for any kind of candy (fail), and a need to write a long overdue thank you note.

RefrigeratorI believe that everything that we encounter and how we react to perceived events molds us into what we are, and thus how we think and behave. That being said, it appears that I avoided writing on the topic of stigma to the point of doing unpleasant, alternative activities instead. Why is this?

I personally fight against the stigma assigned to people with dementia. My label, dementia-of-the-Alzheimer’s-type – atypical, affords me many opportunities to be bombarded with statements that make me feel badly on a daily basis. A few of these include:

“You’re too young to have Alzheimer’s.”

“You look fine.”

“How do you know you have it? I forget my keys all the time. Maybe I have it?”

“My grandfather had Alzheimer’s but it was okay, he was old and he didn’t know what was going on anyway.”

“You better go see a lawyer, NOW.”

And my personal favorite, “You are too smart to have Alzheimer’s.”

Sometimes the stigma is not spoken – at least not to me. Many people assume that I can no longer function at any reasonable level. I have been uninvited to meetings, parties, gatherings, lunch dates and celebrations. I have become a damaged, unqualified, pitiful person in others’ eyes. The most painful thing for me is that often the people treating me as less than a person are my friends and relatives who don’t intend to hurt me. Never mind the public — their views can be rationalized, as they don’t know me. My friends, however, do.

Similar Experiences

Most of us experience at least one or more times when we feel stigmatized. To feel marginalized, isolated, ostracized is a sure sign that some sort of stigma has been assigned.

When I was a child I was fat. Best way to say it is simple and to the point. I believe that anyone who was a fat child understands the stigma and life altering changes that take place when a child in their formative years experiences out-and-out rejection and abuse. It changes who we are.

Many times in our society, forms of stigma are rationalized by blaming the victim. “Lose weight and they won’t call you fat.” Or, “Cancer diagnosis? Oh, did she smoke?”

And so it goes, blaming the “victim.” The personal behavior of the person applying the stigma is not up for scrutiny. Blaming the victim becomes very neat, orderly, and very self-congratulatory for the stigmatizer. “They deserve what they got and I don’t because I didn’t do X. I’m okay, you’re not okay. Bummer for you.”

Oh, and I’m still fat.  Can’t catch a break. Bummer for me.

Alzheimer’s is a dreadful disease that has no treatment or cure. It is fatal and slowly robs the person of their personal skills, needed to master life’s challenges.  When we are stigmatized, our capabilities are reduced prematurely into the end stage of the disease — while we are still very able to live life to the fullest. This is how stigma feels to us. Not feeling like a whole, intact human being is a daily – no hourly – fight we fight, in addition to the disease process happening to our brains.

Talk about unfair. Really? Treat the person with the fatal disease poorly so we don’t feel vulnerable to the affliction.

I have found new joy and purpose in my life. That is not to say this was my choice. I’ve tried to make lemonade out of lemons, as they say. We cannot always choose how we will evolve in this life. My lemonade is still quite bitter most days.

My question is this: If people are to have differences, as they will because they are people, then why stigmatize all of our differences? What a complete waste of time.

While learned people strive for cures for many human ailments, some successes have been gained. It seems to me that the common denominator for all of these afflictions is the clear, ritualistic use of stigmatizing the very people that we aim to treat or cure.

Maybe we should all place our personal stigmas we are assigned to deal with into a really big bucket. We could all pull out random, new stigma labels for ourselves. Maybe then we could begin to understand how utterly stupid and arbitrary our stigma assignments are. We could use our efforts in so many more productive ways then to divide and categorize. People of course must determine for themselves where to begin to cleanse themselves of this.

I will start with cleaning my refrigerator.  

 

ShivesAmy Shives was diagnosed with younger-onset Alzheimer’s disease in 2011.

After graduating from Western Washington University in 1979 with a bachelor of arts degree in psychology, Amy went on to receive a master’s in education with a concentration in student personnel administration. For over 25 years, she was a faculty member at Spokane Community College where she worked as a counselor.

After receiving the diagnosis, Amy left her career as a college counselor and became an Alzheimer’s advocate. She currently serves on the Chapter Board of the Alzheimer’s Association Inland Northwest Chapter, is a member of the Alzheimer’s Association’s National Early-Stage Advisory Group, an Alzheimer’s Ambassador to U.S. Representative Cathy McMorris Rogers from Washington State, and a Walk to End Alzheimer’s® committee member and team captain. She is an active participant on the Washington State Policy Committee and has participated in numerous local media and speaking engagements. Amy is currently a participant in several clinical studies through the University of California, San Francisco Memory and Aging Center. The studies include genetic and behavioral studies, as well as longitudinal studies that observe people over time. As a clinical study participant, Amy plans to donate her brain upon death.

Amy lives is Spokane, Washington with her spouse. Together they have two daughters.


 

Gluten intolerant cartoonWith the rise in popularity of the gluten-free fad diet, it is often difficult for others to understand that people with celiac disease must be on this restrictive diet. For us, it is not about losing weight or emulating our favorite celebrity. The gluten-free diet is our only medicine, our only way to maintain good health. Yet, we are lumped into a group with dieters who want to be trendy – and we’re stigmatized for it – simply because we eliminate this offending protein from our diets.

Ten years ago, the word gluten wasn’t in the average American’s vernacular. Now, the overuse of the term gluten-free undermines the seriousness of the condition. It blinds many into thinking it is the next silly health trend that we will laugh at in another ten years’ time instead of making the connection to celiac disease, a serious, genetic autoimmune disease.

This means we are the butt of countless, hurtful jokes in the media.

Eating Out

It also means we fear eating out because waitstaff and chefs often do not believe us, or don’t understand the implications of “just a little crumb” of gluten. The fact that they don’t see the consequences automatically adds to the stigmatization. We don’t go into anaphylactic shock, and we are usually too embarrassed to go back to the restaurant where we had a bad experience and tell them about our night spent in the bathroom afterwards.

For those of us who are brave enough to venture out, we must keep in mind the “Golden Rule”: Always keep safe snacks on hand in case they can’t provide anything for you. So, we stow our gluten-free provisions away in our purses or pockets, and we sneakily grab bites here and there when the waitstaff aren’t looking. We fear being kicked out of the establishment like a criminal, all because the treatment for our disease (a gluten-free diet) is not seen as equal to that of a prescription drug.

Add to that the humiliating complication of your gastric symptoms becoming the sole conversation as you wait for your meal. After all, you don’t want to be seen as “high maintenance” on a first date, or labeled “difficult” by a co-worker.

To avoid feeling like a “nuisance” for requesting to go to a place with gluten-free options, we abstain from grabbing a pizza with old friends who are only in town for the weekend.

We do not get pleasure from watching our family eat the stuffing at Thanksgiving, or being called a “picky eater” because of our empty plate.

Isolated and Depressed

Because of this stigmatization, we feel angry, isolated, ashamed, depressed, and even powerless. Many of us limit or completely avoid situations in which we can’t control food. We have a deep seeded fear of others harming us because they believe we’re “just hypochondriacs,” or, for those of us who have children with celiac disease, that we’re simply over-protective “helicopter parents.”

Many don’t recognize the fact that it is draining to have to read the labels of everything that goes into your mouth – from food to drink to medicine and even toothpaste, we are constantly on call. It is even more difficult to manage what your children with celiac disease are ingesting.

To avoid putting ourselves at risk, we put vast amounts of stress on ourselves to host the annual cookout or make goodies for our child’s class parties because we can’t trust others to keep us safe. We decide that our dream of traveling the world just isn’t worth the hassle.

In short, we are unable to live our lives to the fullest because others struggle to understand our very real, and not hip-happening, need for this restrictive diet. This is why we must be willing to clearly communicate our needs, to openly disclose that we medically require a gluten-free diet, and to stand up for our good health.

 

Alice Bast_2Alice Bast is founder, President, and CEO of Beyond Celiac (formerly the National Foundation for Celiac Awareness). She is widely regarded as a celiac disease expert and has been a keynote speaker at major medical and allied health industry events, plus culinary and foodservice industry conferences. Read more about Alice Bast here.

Beyond Celiac aims to advance a widespread understanding of celiac disease, and to provide the needed tools to help reach its mission. The non-profit organization works to ensure that celiac disease can be promptly diagnosed and effectively managed. Through education and empowerment, Beyond Celiac enables the community to make the best decisions that reflect their desired health outcomes. The organization serves as a leading free resource for people with celiac disease and their families, and is also a leader in providing accredited training for food industry professionals. By inspiring hope and accelerating innovation, Beyond Celiac serves those on a lifelong gluten-free diet and forges pathways to a cure. Most recently, Beyond Celiac is working to increase celiac disease diagnoses through a robust family testing initiative, Seriously, Celiac Disease. Learn more at www.SeriouslyCeliac.org.

Visit www.beyondceliac.org to learn how you can get involved and find free resources to help you live your life to the fullest and eat without fear.

Editor’s Note: This blog article was originally published in May, 2015. The National Foundation for Celiac Awareness changed its name to Beyond Celiac, and the author’s bio was changed in February, 2016 to reflect this.


 

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