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).


 

 

Caregiver loveComments from caregivers of people living with mental health conditions have been occupying my thoughts. Recently, I worked on two reports based on nationwide surveys of caregivers—On Pins and Needles: Caregivers of Adults with Mental Illness (with partners from the National Alliance on Caregiving and NAMI), and soon-to-be published on the Temple Collaborative website, Community Inclusion from the Perspectives of Caregivers of People with Psychiatric Disabilities.

In both of these reports, most of the caregiver respondents self-identified as close relatives—the vast majority as parents. They made it abundantly clear that they, as well as their loved-ones, face many challenges—including stigma.

Almost twenty years ago I was the primary caregiver of a rapid-cycling, suicidal teen, who I referred to as the “teenaged Morticia.” During those seemingly unending four years between my daughter’s 14th and 18th birthdays, life was chaotic and frightening for my entire family. Even though we experienced many of the same issues that caregivers report today, at the time I didn’t think of it as stigma. But I guess it was.

Financial Strain

I regarded the inequities that my family experienced as out-and-out discrimination. I was outraged that in that pre-parity era getting insurance reimbursement was a constant struggle. Claims were always being lost and denied—or lost, then denied. In fact, insurance coverage for my daughter’s treatment might have ended altogether—because she reached the lifetime limit by the time she was sixteen! To my relief along came the first iteration of the federal parity bill, and even though overt discrimination was still legal (albeit somewhat lessened), at least half of the cost for a limited number visits were covered—rather than nothing at all.

Were it not for having really good credit, my family would have drawn even closer to bankruptcy as we supported, financially and otherwise, my daughter’s recovery. Somehow we cobbled together treatment that made a difference, and won the battle to have the school district pay for an individualized education at a private school where, unlike the experience reported by so many caregivers in the surveys, the staff did understand and made a positive difference.

My daughter is no longer Morticia. She has grown up and left home. She has become an accomplished woman—a hospice nurse (maybe there’s some irony in that) who is happily married and expecting her first child.

Social Stigma

The financial burden impedes caregivers’ ability to afford to include their loved ones in all of their own social activities. In these surveys caregivers were emphatic that stigma must be addressed by educating school personnel, employers (and employees), clergy and other community leaders, and the public. They begged for compassion for themselves and their loved ones.

Caregivers said that because of stigma, their social life was compromised and invitations dwindled. One mother, speaking about her daughter reported: She’s fine . . . (but) I have no socialization!

Caregivers reported that their employment suffered too, as they try to make up for the deficiencies in mental health services and supports. Still they wanted to do more, as did this mother: The only way I could support her more is to quit my job and be with her 24/7.

When I think back to those difficult years when my daughter struggled, what sticks out most in my mind is the way that people looked at me. Unlike many of the survey respondents that reported people turned away, or pitied, or even blamed them, I remember people did look at me—with tears in their eyes. Maybe their tears represented the compassion that caregivers expressly called for, but it felt like the tears were just the outward expression of the cliché: there but for the grace of G-d….

 

 

Debbie PlotnickDebbie F. Plotnick, MSS, MLSP is the Vice President for Mental Health and Systems Advocacy at Mental Health America (MHA). Previously, she was the Director of Advocacy and Policy for the Mental Health Association of Southeastern Pennsylvania (MHASP), where she developed policy, organized grassroots advocacy activities, and designed recovery-oriented, community services. In her role at Mental Health America, Debbie provides leadership for mental health and systems advocacy initiatives within its affiliate network, with outside coalitions, industry/business, and policy makers. She provides technical assistance to policy makers, government officials and is frequently called up to speak to the press and the general public about what is needed to create a community-based continuum of mental health care, and to challenge entrenched mindsets and misinformation. She also coordinates the efforts of the Regional Policy Council (RPC), a six person council of MHA affiliate policy experts.

Debbie earned a degree in Political Science from Bryn Mawr College. And she holds dual master’s degrees in Social Service (MSS) and Law and Social Policy (MLSP) from the Bryn Mawr Graduate School of Social Work and Social Research. But her real understanding of mental health recovery and her passion comes from the people she works with and for, and her true expertise comes from her own lived experience, as a family member, and a mental health systems advocate.   


Helping hand caregivers

Caregiving has many faces. Family caregivers range from the parents of children with special needs, to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease. But despite considerable gains in public visibility of family caregivers, many continue to experience stigma, and struggle to maintain their own health and well-being.

Caregiving is a national phenomenon. It will only increase in prominence in the future. The population of 35 million elders will double by 2030. So the number of people who need eldercare will continue to grow rapidly as the population ages. The number of adult children caring for a parent has tripled over just the past 15 years.

Find Strength in Numbers

If you are a family caregiver yourself, the fact is you are not alone. Look around – statistically, two out of every five adult Americans are family caregivers – that’s tens of millions of family caregivers across the country. You probably know someone who is caring for an elderly mother with Alzheimer’s, or a child with autism, or a partner with cancer. You have strength in numbers and help is never far away. Even caregivers of those with rare diseases can find connectedness: An estimated 350 million people worldwide suffer from rare diseases – including 30 million in the U.S. and another 30 million in Europe.

It’s never too early to begin a conversation with your friends or other caregivers. Exchange ideas on caregiving and use your friends and fellow caregivers to create a support system. Talk openly with your friends about your caregiving challenges. You will probably find that they can sympathize or know someone else in your situation – and they may even be caring for someone, too! Nearly everyone will be a caregiver at some point in his or her life. It’s nearly as certain as death and taxes.

Recognize the Burden

Caregivers endure stress caring for their loved ones. Feelings of shame about certain illnesses contribute to caregiver burden, and negatively impact caregiver functioning and wellness. This is compounded as both the ill person and the caregiver experience the stigma. Some caregivers may face discrimination, frequently at work. Others may experience social exclusion. Often stigma is strongly associated with negative stereotypes of older people and characteristics of chronic illnesses. This reinforces the importance of support for caregivers.

Data show that there are significant costs of caregiving. For instance, those who work while fulfilling their family caregiving responsibilities have a higher incidence of major health conditions (such as depression, hypertension, and diabetes) than non-caregivers – directly as a result of the stress from their caregiving challenges. And ignoring their own health (sleeping, eating, exercising, visiting a doctor) further undermines caregivers’ health. Caregiver stress can erode the immune system and actually increase susceptibility to illness.

Caregiving can feel like an emotional rollercoaster. Many family caregivers feel overwhelmed, and experience feelings of anger, depression, and guilt. All these feelings are normal. And for many people caregiving can ultimately be one of the most rewarding experiences of their lives! To be successful, support from friends and family is needed.

The journey to caregiving sometimes starts slowly – when a spouse is diagnosed with ALS (Lou Gehrig’s disease), or a child develops a mental illness. Maybe it happens all of a sudden – when a child is born with Tay-Sachs or a parent has a stroke. However it began, there are millions of caregivers facing challenges and needing support.

Help is the most important step, but admittedly it is not always easy. The very symptoms of depression, such as lethargy and hopelessness, can rob one of the will to seek help. Embarrassed by the stigma of depression, and simply denying that anything is wrong, the caregiver may retreat into isolation. These can all keep one from taking that most important first step – offering, and accepting, help.

 

 

John Schall hi resJohn Schall is CEO of the non-profit Caregiver Action Network (CAN). Based in Washington, DC, CAN works tirelessly to advance resourcefulness and respect for family caregivers across the country. CAN’s free educational resources assist in learning to develop effective caregiving coping skills. CAN has tips and tools that can help caregivers avoid burnout and stay healthy themselves while caring for their loved ones.

CAN recommends that caregivers:

  • – Seek support from family and friends.
  • – Accept offers of help and suggest specific things people can do to help.
  • – Learn how to communicate effectively with doctors.
  • – Take respite breaks often.
  • – Watch out for signs of depression and don’t delay in getting professional help when they need it.

Connecting caregivers to one another is also vitally important because caregivers need to know that they are not alone. CAN maintains the Family Caregiver Forum so caregivers can connect and help each other. This online forum is a safe place where any caregiver can ask a question of others dealing with similar circumstances and get thoughtful and helpful responses.

So if you need help managing any of the many challenges that come from caregiving – such as isolation, feelings of anger or depression, or communicating with doctors – feel free to check out CAN’s free resources at CaregiverAction.org. And if you are a patient who relies on a family member for help, do them a favor and send them to CAN’s resources because they need someone to lean on, too!


 

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