b'ing stigma-free

 

 

Corrigan 9_2014 smallMillions of people around the world suffer from a mental illness. One in four, in fact. Yet the rights of people with mental illnesses are still unfairly limited. People with aspirations and goals. Opportunities stripped simply because of the stigma around mental illness. This limits society’s potential. While people with mental illness may be different, aren’t we all different from one another? Everyone has their own story. Their own set of challenges. Their own amazing strengths. And it is up to society to embrace and encourage these differences that make our world so unique.

I interviewed Dr. Patrick Corrigan who is Distinguished Professor the Illinois Institute of Technology as well as an active mental illness advocate. He gave important insight on stigma and how to combat it.

B Stigma-Free: How has the stigma around mental illness changed from when you started your work?

Dr. Corrigan: It’s probably getting worse. There’s pretty good evidence that the degree to which we equate mental illness with these God awful shootings in schools leads to the public believing that people with mental illness are dangerous. A colleague of mine in Australia did a study that showed that after the Sandy Hook shooting with the kids in Connecticut, the stigma in Australia got worse. Also stigma tends to bring alive bigots and perhaps the biggest bigot we got in the United States right now is that guy in the White House. He said after Parkland that the Parkland shooter was able to do what he did because we’re not locking up those crazy guys anymore, and so he called for more institutions and state hospitals which is totally contrary to anybody’s notion of what’s good mental health care.

B Stigma-Free: How would you say we could help the stigma improve, or get rid of the stigma?

Dr. Corrigan: What does not make for good stigma change is education. Research is pretty clear that programs that try to contrast the myths of mental illness with the facts, for adults, typically have no beneficial effects, and sometimes might make things worse. Clearly what makes stigma better is the degree to which the public interacts with people with mental illness. What changed racism in the United States is the degree to which the white majority interacted with the black minorities peers. In my lifetime, gay stigma has gone away hugely. Not because my kids learned in school that being gay was genetic but because by the time they got to school they knew they had two gay uncles and a gay minister and people came out and so it’s the same thing with mental illness. When people with mental illness come out, that’s gonna have a big change.

B Stigma-Free: Hence the title of your book.

Dr. Corrigan: Yes, “Coming Out Proud to Erase the Stigma of Mental Illness” is about telling our stories. We have a new book for college students, same thing. It’s the story of 30 college students, mostly through “Active Minds”, telling their story of recovery.

B Stigma-Free: So, how do you think your experiences have influenced your own work with stigma?

Dr. Corrigan: I am a person with a serious mental illness. I have been hospitalized, diagnosed with bipolar disorder, major depression, generalized anxiety disorder, took my pills this morning. You know I am a straight male. While I am all for gay rights, I don’t live them and therefore don’t have a lot of grounding in which to understand it. Mental illness is personal to me, I do understand it, therefore I’m quite motivated to change it.

B Stigma-Free: Do you think that people are aware of how they are perpetuating the stigma or do you think that the stigma is unintentional?

Dr. Corrigan: I think the average person is totally oblivious to the idea of mental illness stigma. I think we have made huge strides in racism and sexism and sexual orientation. I think people don’t understand that the stigma of mental illness is discrimination. I think we’re much more concerned about treating people than we are about the rights of people with serious mental illness.

B Stigma-Free: How would you say the stigma related to bipolar disorder is different from the stigma related to other mental illnesses?

Dr. Corrigan: There is some debate whether within psychiatric illnesses some are worse than others. When I’m talking psychiatric illnesses right now I am excluding substance use disorders. There’s some thought for example of stigma of schizophrenia is worse than the stigma of bipolar disorder which is worse than the stigma of general depression. I think depression is less stigmatized because people understand it. I think 100% of the population have depression and anxiety. I don’t think that rises to the level of psychiatric diagnosis but I think everybody has been pretty seriously depressed and anxious so they can understand it. The kind of mania in bipolar disorder is a lot less common. And then you have substance use disorders, I think substance use disorder is clearly stigmatized more than mental illness, in part because the stigma of substance use disorder is legal. The Americans with Disabilities Act, which protects you on the job or protects you in the school, does not protect you if you are actively abusing drugs and alcohol. So the stigma in drugs and alcohol is a much bigger challenge.

B Stigma-Free: What is something you want people to know about the stigma around mental illness?

Dr. Corrigan: That we should not expect people with mental illness to pass as normal. That we should expect that we’ll stand alongside a person with mental illness as they are. Again a good analogy, we would not expect a lesbian or gay to pass as straight. We would instead demand that everybody in their community stands in solidarity with a gay person.

B Stigma-Free: What message do you think is important for me to include in an article I would be writing?

Dr. Corrigan: I think it’s important to understand that the stigma of any illness is as unjust as racism and sexism and alike. We now realize where 80 years ago we did not, that judging somebody based on their skin color is a moral sin and withholding work or independent living opportunities for them is a grave injustice. The parallel, which I think the population understands less well, the parallel applies to the stigma of mental illness.

 

Mental illness will never go away. But the stigma around it can. The best way to overcome this stigma is by directly interacting with people with mental illnesses. Dr. Corrigan’s comparison of mental illness discrimination and racism is a perfect example of how effective we can be through interaction. Mental illness discrimination is just as wrong as racism and sexism and when the public is able to realize that, we will make huge strides in eliminating the stigma. Every person should be treated with respect and inclusion. Our community is missing out on some incredible people right now and erasing the stigma will bring light to all the potential we have within our society.

 

Patrick Corrigan is Distinguished Professor of Psychology at the Illinois Institute of Technology. Corrigan is a licensed clinical psychologist setting up and providing services for people with serious mental illnesses and their families for more than 30 years.  He is also principal investigator of the National Consortium on Stigma and Empowerment, the only NIMH-funded research center examining the stigma of mental illness. Corrigan is a prolific researcher having authored or edited 16 books and more than 400 papers.

 

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Erin O’Leary is a graduating senior at Fairfield Ludlowe High School. She interned at B Stigma-Free for the last three weeks of her high school senior year, and  interviewed Dr. Corrigan as part of her internship. She recognizes stigma in her everyday life and has been working to spread awareness. She enjoys writing and is excited to pursue a major in communications at Fairfield University in September 2018.

Owen Granberg is a graduating senior who collaborated with Erin for the interview as part of his internship at B Stigma-Free. He wants to spread awareness about the harmful effects of stigma through his writing. He’s enthusiastic about attending Sacred Heart University in the fall of 2018, and can’t wait for new opportunities to express his creativity in the future.


3d-singing“Hey Retard!” were the words I heard every day when I walked into school, from first grade until the end of high school. As an individual growing up with Williams Syndrome, the word ‘retard’ made me feel isolated, as if I had no one to turn to as a friend. This mental abuse caused me to question who I was. I would often ask myself, “Why did I have to have a disability?” I’d cry to my mom in the hopes that she would let me stay home from school. I wasn’t proud of myself because of my disability and I struggled to find peers who didn’t view me differently. In grade school, no one ever took the time to see me for who I truly was. They only saw my disability and not the astounding abilities that I possess.

After finishing high school I was accepted to attend Berkshire Hill Music School in Boston, Massachusetts. It wasn’t until I went away to college that I finally escaped the abuse of my classmates and other peers. College offered me a breath of fresh air and I was able to see the light at the end of the tunnel of my dark past. For the first time I felt included, as if I was a “normal” person, integrated with my typical peers. I went to school without being judged because of my disability.

They only saw my disability and not the astounding abilities that I possess.

I am now able to call myself a friend, an employee, and an advocate in my community. I no longer see myself as a disability, something I believed I was for so many years: nothing more than a ‘retard.’ Being called this and thought of so negatively is dehumanizing. This is something that MUST be changed within our society. Individuals with disabilities are so much more than the “r-word.”

Join me in celebrating Spread the Word to End the Word, a national campaign supported by Best Buddies and Special Olympics that brings awareness to ending the disrespectful use of the r-word. As an individual with a disability, I have proven myself to be capable of everything all of my peers are. I have taught at an international conference; I have spoken at national events as a Best Buddies Ambassador; I volunteer in the community; I have held competitive employment positions; and I am now able to consider myself a true friend. None of these things fall under the stigma of the “r-word.”

Because we are different does not mean we are less.

I used to lack any awareness of my own self-worth. However, I now have the confidence to stand up for myself, and also others who might be the victim of bullying. In fact, I am proud to have Williams Syndrome and proud to be a leader in the community helping to Spread the Word to End the Word in the hopes that all people with a disability are not thought of in a negative way. End the use of the “r-word”, so that individuals with a disability are looked upon as equals. Because we are different does not mean we are less.

 

Rachel Lipke graduated from Berkshire Hills Music School in Boston, where she studied music. While there she was matched in a one-to-one friendship through Best Buddies, which changed her life. Best Buddies is an international non-profit organization that focuses on enhancing the lives of individuals with intellectual and developmental disabilities (IDD) through one-to-one friendships, integrated employment, and leadership development. Rachel says that Best Buddies enriched her life by giving the gift of all three, offering the much-needed self-confidence she had been seeking. 

Since joining Best Buddies twelve years ago, Rachel quickly excelled in her passion for inclusion by completing ambassador trainings and speaking at local and national events. Rachel continued to challenge perceptions about the abilities of people with IDD by shifting from student to teacher, and began leading ambassador trainings. In this role she serves as an instructor and coach for her peers. Rachel was recognized for her achievements by being awarded the “Spirit of Courage Award” at the Best Buddies International Leadership Conference. She is also matched in the friendship program, and recently joined the jobs program providing her the opportunity for competitive employment. Rachel also volunteers in her community and is passionate about sharing her story to make a change in the world.

Rachel grew up in Chicago and moved to Maryland with her parents two years ago to be closer to her sister and her newborn niece.

Photo: Best Buddies Rachel (on the right) and Amy Davies.


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).


 

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