Facing a Double Stigma
By Hanem Ali, NAMI Project Manager
Mental Illness stigma is universal, although it may appear differently across countries, communities and religious groups. The pervasiveness of mental illness stigma is often higher in ethnic minority and religious communities. This is mainly because of the stereotypical views about mental illness in general, the double stigma that these communities already face because of their group affiliation and the cultural tendencies that associate shame with seeking mental health services.
In addition to the prejudice and discrimination ethnic minorities generally face from society at large, those with mental illness experience stigma and discrimination by their own communities. Individuals who experience mental health problems are socially isolated and labeled crazy or violent. Mental illness is a subject that is taboo and is rarely discussed among families, friends and religious congregations in minority communities. The stigma of mental illness is so prevalent that often times those who experience mental illness symptoms don’t share even with their families. As a result, they don’t receive treatment, which can delay or hinder them from getting better and ultimately from their recovery.
In recognition of National Minority Mental Health Awareness Month and her upcoming presentation on faith and mental illness at the 2014 NAMI National Convention, NAMI spoke with Melody Moezzi, an Iranian-American who an activist and lawyer and author of Haldol and Hyacinths: A Bipolar Life, who has had her own experience of dealing with bipolar disorder and stigma in her community.
NAMI: As a woman who carries the double stigma of being an Iranian Muslim and someone with bipolar disorder, how did you make sense of and manage this double stigma?
I’m not sure it’s something you ever really make sense of. It’s more like something you live with and learn from. And I’ve learned a lot on account of my various identities. One advantage of already belonging to a bunch of other historically marginalized groups as someone living with a mental illness is that you’re already experienced at fighting discrimination to a certain extent. Surely, it’s tougher as well in some respects, feeling like you have to fight all these different battles at once, but ultimately, you need to decide whether you’re going to embrace it and join in the fight or stand back and let others speak for you and misrepresent your experience and capabilities in the process. I’ve just never been able to do that. If I feel as though a group is being misrepresented, particularly if I belong to that group, but not necessarily even, I can’t help but stand up.
From your personal experience, what suggestions might you have in addressing the problem with people’s isolation and secrecy around mental health issues in ethnic minority and religious communities?
First off, it’s important that we recognize that our silence has consequences, and those consequences are deadly. Suicide is a serious risk factor when it comes to mental illness, and no community is immune. I encourage communities to start educating themselves and talking about these issues, while recognizing that having a mental illness isn’t a curse. I think it’s important that those of us with minds that work differently—whether it’s because we have depression or bipolar disorder or schizophrenia or autism or dyslexia—acknowledge that while these brain disorders can lead to problems others might not have, they can also allow us to see solutions in places where others can’t see them.
Given the lack of open discussion about mental health and the cultural tendencies in ethnic minority and religious communities, some people who need mental health care might not seek it. How do you think we can overcome these challenges?
I think we need to appeal to a given community's values in a way that speaks to its members. For example, there is a deep-rooted respect for science and medicine in many Muslim communities. We are especially proud of our role in scientific advances via the Islamic Renaissance, and for many Muslim parents, their biggest dream for their children is that they become doctors.
For each community of course, the angle will be different, but I think it’s those who belong to different communities who will ultimately be the most successful if combatting stigma and ignorance within those communities. To a great extent, it’s up to us to address these issues because we understand our own given communities and groups better than any outsiders ever could in most cases. We have an inherent advantage, and that can’t be overestimated.
In many ethnic minority communities, people have a negative view of mental health services and may tend to mistrust and underuse them. How do you think these challenges can be addressed?
First off, I think we need to acknowledge that in many cases this mistrust was at least originally warranted based on historical abuses. The American government and medical establishment have been known to use mental health status as a means of discrediting minorities in the past. I live in North Carolina, where we had a Eugenics Board that sterilized thousands of African Americans well into the 1970s, for being mentally defective or feeble minded, when for the most part, they were just black and poor. This kind of thing leaves a mark, especially with victims still seeking justice to this day, so to think that people would just get past it is ridiculous. I don’t think we can get past anything until we fully acknowledge shameful histories like this.
Another good example is the inclusion of homosexuality in the DSM until 1973. Certainly, we can’t just expect historically marginalized communities to jump on board just because we claim things have changed. Rather, we need to begin by encouraging more within those communities to enter the mental health field, providing incentives whenever possible, as in some cases, building trust will require working with a mental health professional who actually belongs to the same community as the patient. For those providers who are not from within the community, they ought to educate themselves in the traditions and historical experiences of that given community.
In writing your book, Haldol and Hyaciths: A Bipolar Life, what were the challenges you had with it?
This wasn’t an easy book to write. For one, I had to interview my friends and family and review my medical records, as there was a great deal that I simply couldn’t remember. Mania and depression have this wonderful knack for wrecking my memory, and that was something I had to deal with. Also, I feared losing credibility and damaging some of the causes I’d already fought so hard for. Specifically, because my first book was about young Muslim Americans and I had been extremely vocal after 9/11 in defending the rights of Muslim Americans in an increasingly hostile and misinformed context, I was afraid people might draw the conclusion that I was Muslim because I was crazy or that I was crazy because I was Muslim and that I would thereby destroy my credibility on all fronts. Ultimately, however, I realized that there are plenty of incredibly successful folks living with serious mental illnesses, and while many still don’t feel comfortable speaking publicly about it, a good number reached out to me after the book was published to applaud my courage.
What do you hope to get out of spreading your story in your book?
My hope is that those same people who reached out to tell me to tell me how brave I was to write this will now be inspired to ditch their own shame and silence and finally stand up for themselves and share their stories, thereby multiplying the effect. We need more advocates with lived experience who aren’t ashamed to share that. You can only be silent for so long until that silence becomes criminal. In this case, our silence is costing lives. We are losing some amazing people to suicide, homelessness and the correctional system. I can’t stand that we live in a country where our largest mental health facilities are now jails and prisons, where we still use solitary confinement regularly as punishment and treatment despite all the evidence suggesting it is not only ineffective, but also counterproductive. My hope is that my book will open people’s eyes to broader issues—that it will help combat stigma surrounding mental illness, particularly in minority communities, and ultimately, that it will help people see that we must start treating health, including mental health, as a human right in this country.