Exploring Stigma and Its Impact

“A civilization should be judged by how it treats its mentally ill: discrimination is about the conditions in which our patients live, mental health budgets, and the priority to which we allow these services to achieve.”

–Peter Byrne, former Director of Public Education, Royal College, UK

May is Mental Illness Awareness month. While I am not always in favor of these arbitrary month by month focus on issues as it seems superficial, I WILL leverage it to talk about the real impact of mental illness.

First, were you aware that four hundred and fifty million people worldwide have a mental illness? (The population of the United States is 321.4 million.) Sixty percent of people living in developed countries with mental illness do not receive treatment and for those living in underdeveloped countries, 90% do not receive care.

Also, were you aware that undiagnosed and untreated mental illness represents the biggest economic burden to our country and to the world? The World Health Organization estimates that by 2030, costs to society due to undiagnosed and untreated mental illness will be six trillion dollars. The majority of that cost is due to disability and to loss of work.

Clearly the issue is significant. Researchers, psychologists, sociologists, and many health care professionals agree that the major barrier to getting the treatment that is needed is stigma. Stigma has been defined as, “a sign of disgrace or discredit, which sets a person apart from others.” The experience of stigma manifests itself mainly as shame. Shame leads people to eschew seeking help, which leads people to try to conceal their illness.

It is not a new concept to compare the diagnosis and treatment of mental illness unfavorably with other physical diseases. When one has been stricken with a chronic disease like asthma or arthritis or cancer, friends, family, and the medical community are quick to lend support and to respond with care. But there is no such outpouring of support for those with mental illness. There is confusion about what to do. There is shame within families. There is fear among friends and moreover, the community.

We held a very powerful Solution Series in New Hampshire recently where one of the panelists talked about the employer being one of the most important players in helping individuals to identify and treat their mental illness—in a safe and supportive atmosphere. Both employer and employee benefit. Helping individuals with mental illness obtain and maintain employment is key to advancing their economic well-being and their equity. Employment results in the establishment of connection to others through working relationships. It means individuals are covered by health benefits, which offer some coverage for the treatment of mental illness.

I concur with Patrick Kennedy that the diagnosis and treatment of mental illness must become a top national public health priority. Through the Kennedy Forum, Patrick has laid out an extensive platform for ways to address issues around improving access to mental health services, including prevention and early treatment. (https://www.thekennedyforum.org/vision) The actions Kennedy outlines would lead to better care for those suffering with the pain of mental illness and could help advance a new understanding of mental illness—and reduce stigma. What would it look like to live in a world where we move toward one another in an effort to help rather than shy away in fear?

Psychologist Peter Byrne had it right when he said:

People must also be courageous enough to help fight a battle that is not entirely theirs; to fight an established institution in order to create positive change. It is the basic quality of a human– to help each other– that people must find and use in order to make the world a better and safer place.

As always, I welcome your thoughts.

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Rigid academic and social expectations could wind up stifling a mind that, while it might struggle to conjugate a verb, could one day take us to distant stars. www.templegrandin.com

April is International Autism Awareness Month. It is so designated to raise awareness about autism and to promote the concepts of inclusion, self-determination, acceptance, appreciation, and the opportunity for those with autism to achieve the highest quality of life.

When you hear the word autism, what is the image that immediately comes to mind? What words do you use to describe someone with autism? Whose face do you imagine?

I suspect that the first image that comes to mind is not the face of Einstein or van Gogh or Steve Jobs. And yet, according to the 2013 American Psychiatric Association’s revised definition of autism, the spectrum can range from brilliant inventors and creators to those who are not capable of feeding or dressing themselves. Autism is part of a continuum with a broad range. Many of our most capable and creative leaders may touch on the spectrum.

And yet, we tend to label those with autism as disordered or abnormal, with an irregular pathology. We tend to make assumptions based on our experience in the media or in life. We assume that our experience is the prevailing reality.

What if we were to look at those who are not like us as just… different? What if we didn’t socially pathologize autism, or, for that matter, any type of developmental—or cultural—or economic—or social—difference?

All of us are different in some way. We each have our own biological and cultural differences, which many of us hide or keep secret because we don’t want to be labeled. Some of us come from extreme poverty. Others of us are recovering addicts. Some of us have been incarcerated. Others of us are over 55. For each of these “populations,” there is an overarching definition or label that does not necessarily account for our strengths, our abilities, our talents, or the things that make us unique.

Temple Grandin is a remarkable advocate for autism awareness. She is a professor of animal science and a consultant to the livestock industry. In 2010, she was named by Time Magazine as one of the 100 most influential people in the world. When she was two years old, she was diagnosed with “brain damage.” She came from an affluent family who could afford tutors and nannies and other helpers to guide her through school. Otherwise, she would have been institutionalized as most people like her would have been. Dr. Grandin uses her strengths—her ability to see things differently from those of us who are labeled as “normal”—to not only create and invent methods for keeping livestock, but also to raise awareness about autism. (For an animated interview with Dr. Grandin, check out this interesting video: https://youtu.be/Ifsh6sojAvg)

Dr. Grandin is just one example of what could happen if we were to question our assumptions about the labels we tend to assign to others.

What words might we use to describe those who are different from us in a way that doesn’t pathologize or stigmatize them?

Tag: stigma