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What Happens When You’re Disabled but Nobody Can Tell

The author and clinical psychologist Andrew Solomon examines the disabilities that ramps and designated parking spots don’t address.

By Andrew Solomon

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I have depression and anxiety. These conditions are well-controlled most of the time, but when I have a significant dip, no one makes anything easier for me unless I explain it all to them — an unpleasant effort at the best of times and beyond my ken at the worst. When my depression mushrooms, I shun visibility; I walk so close to buildings that my shoulder becomes dirty. Because my intermittent disability is invisible, in the thick of it I have often felt compelled to make myself invisible. I neither anticipate nor receive public compassion.

Such social insensitivity is endemic to the lives of people with permanent but invisible disabilities that affect their daily functioning, who are likewise deprived of outer symbols to signal their condition.

The word “disability” evokes images of ramps, lower-positioned urinals, grab bars and other allowances in our architectural landscape. But an untold number of people have disabilities — from A.D.H.D. to addictive disorder to lupus — that aren’t necessarily helped by a designated parking spot. A person who walks with a limp but uses no physical support may be jostled on the street like anyone else. An autistic person, or a person with a mental illness, will often be disdained or even assailed for peculiar or antisocial behavior.

Invisible disabilities can be easier in some ways than physically evident ones, but they can, equally, be more difficult. They have the advantages and disadvantages of secrecy.

The Americans With Disabilities Act (A.D.A.) , which marks its 30th anniversary this month, requires employers, businesses, public facilities, transportation and telecommunications to make accommodations for a disabled person whose physical or mental impairment interferes with one or more major life activities. While accommodating people with invisible disabilities is mandated by law, what specifically constitutes a disability is opaque, and what constitutes accommodation is just as vague. For many people, the A.D.A. is a broad, blunt tool that does not always serve their specific needs.

The Center for Disability Rights (C.D.R.) lists the following invisible disabilities: “learning differences, deafness, autism, prosthetics, Traumatic Brain Injury (T.B.I.), mental health disabilities, Usher syndrome, bipolar disorder, diabetes, A.D.D./A.D.H.D., fibromyalgia, arthritis, Alzheimer’s, anxiety, sleep disorder, Crohn’s disease, and many more.” Post-traumatic stress disorder, epilepsy, multiple sclerosis and cystic fibrosis are other invisible disabilities. The C.D.R. cautions, “Unless it is disclosed, no one knows for sure whether someone has an invisible disability.”

Because of the issue of disclosure, there is no way to track the number of people with such disabilities. There are rough approximations of the number of people with, for example, lupus or cystic fibrosis, but some of those people may view themselves as substantially disabled while others may not. According to one estimate from the World Health Organization , about a billion people worldwide are disabled. Of the 61 million adults in the United States with a disability, a census report found, only around 6 percent use visible supports such as a wheelchair or cane. The online resource Disabled World has suggested that 10 percent of Americans have some sort of invisible disability, including people with chronic medical conditions.

In the time of Covid-19, these numbers are certain to grow as people confront increasing physical and mental health issues.

Societal reactions to hidden disabilities can be harsh. Some parents of autistic children say that it is difficult to be in public with a neurotypical-seeming child who suddenly experiences a huge meltdown because of apparent sensory overload. People stop and stare, offer unsolicited advice or reprimand the parents for their presumed abuse or indifference in the face of their child’s outrageous behavior. People with schizophrenia have been spared some opprobrium by the invention of cellphones and earbuds: It can be hard to tell on the street who is engaged in imaginary conversation with nonexistent people. Yet while people with untreated psychoses are seldom dangerous, their behavior can be erratic and jarring, and because it is not always understood as being rooted in a mental health condition, it often provokes unpleasantness, even violence .

We don’t question whether people with profound mobility challenges can run down the corridor to get the door; we don’t ask people on crutches to participate in a dance (though some people who use them can do so). But what are we to make of someone who has to be insulated from extreme stress because she has epileptic seizures when she is strung out? What do we do with someone whose clinical depression prevents him from working efficiently on bad days?

Students granted extra time to take a test may be met by the cynicism of peers; some may choose not to avail themselves of a reasonable accommodation because they fear being stigmatized. Working people who require specific environmental conditions — an autistic person, for example, may need an office without florescent lighting — may attract suspicion and even mockery.

Wayne Connell founded the Invisible Disabilities Association in 1996 after his wife was diagnosed with multiple sclerosis and late Lyme disease . He was frustrated by the outside perception that she didn’t have a real infirmity.

People with invisible disabilities who are young or who look healthy are often accused of faking their condition or milking the system, and must fight to have their challenges acknowledged. Some women report being told that they are “too pretty or attractive to have a disability.”

People with hidden disabilities may experience significant physical or psychic pain that may not be legible to others. The ethicist N. Ann Davis has commented, “There is no reason to believe that the invisibility of a disability itself necessarily lessens its impact or makes the disability less serious.” Disability, she explained, is not “a purely factual matter,” but is always being defined and redefined in relation to changing social architecture and norms. As one group of scholars put it, “Legislation is ‘one size fits all’ — invisible disabilities are not.”

In the Victorian era, people in mourning wore a black armband or dressed in black clothing known as “widow’s weeds,” so that others would know that they required tender respect. We have abandoned such markers of extreme grief. That grief is, in effect, a temporary disability. The day after my mother died, when I was on my way to the funeral home, no one I encountered outside had any idea that I was in emotional agony, and their ignorance exacerbated my anguish. In many circumstances, privacy is a liability, not an advantage.

As our lives grow longer, as diagnostic criteria expand and as medical advances save people who would once have died, the proportion of disabled people rises. There is nonetheless little specific acknowledgment of invisible disabilities in workplace policies or legislation.

Some people have tried to hide their situation even from family members. Those who have been validated at home tend to enjoy better self-esteem and to be more comfortable with workplace disclosure, but that is no guarantee that such sharing will turn out well for them. Disclosure remains the exception rather than the rule. As the Norwegian scholar Susan Lingsom succinctly observed, “Social conventions support silence.”

The popular belief that disabilities worth taking seriously are evident is often internalized by those on the short end of the comparison, who then find it difficult to deal with others’ reactions when they expose their conditions. People who disclose at work can find themselves passed over for promotions and stuck with low salaries. People who disclose socially may encounter personal rejection.

Invisible disabilities may be invisible even to the people whom they affect. Roy Richard Grinker, a professor of anthropology, international affairs and human sciences at George Washington University, recently described a student who had felt inadequate until she entered college. “Getting diagnosed with A.D.H.D. was one of the best days of my freshman year,” she told him and her classmates, “because someone actually saw that I wasn’t stupid or lazy, that I just needed treatment.”

The coronavirus pandemic has surfaced the particular problems faced by those with invisible disabilities. Many people who were in supported housing have left because of the risk of contagion, and are now expected to care for themselves or find a family member who will take care of them. When someone who uses a walker leaves his assisted-living community, the walker is neither discarded nor confiscated, but for those whose disabilities manifest in subtler ways, the system of care is itself the prosthesis, and it has been snatched away.

Many of those who have “recovered” from Covid-19 will continue to face significant health problems for the rest of their lives. At a moment of record unemployment, disabled people are prone to face particularly steep challenges in finding work; at a time when, according to one study , nearly one-third of Americans are suffering from some form of psychological distress, including depression and anxiety, it may be hard to find a job candidate with a completely clean bill of health.

The pandemic may add to the ranks of the disabled. After this time of anguish, many people will want to return to the ostensible (and illusory) social norm of “ability” and robust well-being; we fear disability and illness now more than ever. It will not be surprising if people choose not to disclose their newly-acquired limitations and instead bear the burden of secrecy. Stigma has not melted away while we’ve been in quarantine. There can be no question that accommodating disabilities is costly. Not accommodating disabled people is costly, too; when the disability is invisible, it often goes unaccommodated, A.D.A. or no A.D.A. Research has demonstrated that people who are keeping significant personal secrets become preoccupied with them, living in a private hell and expending their energy on concealment.

This strategy of personal concealment serves no advantage at all: not for the person affected, for the employer or for a society deprived of the very real contributions people with invisible disabilities would otherwise stand to make.

Andrew Solomon ( @Andrew_Solomon ) is a professor of medical clinical psychology at Columbia University Medical Center and the author of “ Far From the Tree ,” which has been made into a documentary film , and of “ The Noonday Demon ” and “ Far and Away .”

Managing Anxiety and Stress

Stay balanced in the face of stress and anxiety with our collection of tools and advice..

How are you, really? This self-guided check-in will help you take stock of your emotional well-being — and learn how to make changes .

These simple and proven strategies will help you manage stress , support your mental health and find meaning in the new year.

First, bring calm and clarity into your life with these 10 tips . Next, identify what you are dealing with: Is it worry, anxiety or stress ?

Persistent depressive disorder is underdiagnosed, and many who suffer from it have never heard of it. Here is what to know .

If you notice drastic shifts in your mood during certain times of the year, you could have seasonal affective disorder. Here are answers to your top questions about the condition .

How much anxiety is too much? Here is how to establish whether you should see a professional about it .

The Mental Health of People with Disabilities

Adults with disabilities report experiencing frequent mental distress almost 5 times as often as adults without disabilities.  Call your doctor if your mental health gets in the way of your daily activities for at least 14 days in a month.

December 3 rd is International Day of Persons with Disabilities . In the United States, up to 1 in 4 adults have a disability. Many people will experience a disability at some point during their lives. Disabilities limit how a child or adult functions. These limitations may include difficulty walking or climbing stairs; hearing; seeing; or concentrating, remembering, or making decisions.

Although “people with disabilities” sometimes refers to a single population, this is a diverse group of people with a wide range of needs. Two people with the same type of disability can be affected in very different ways. Some disabilities may be hidden or not easy to see.

Many Adults with Disabilities Report Frequent Mental Distress

A CDC study found that adults with disabilities report experiencing more mental distress than those without disabilities. 1 In 2018, an estimated 17.4 million (32.9%) adults with disabilities experienced frequent mental distress, defined as 14 or more reported mentally unhealthy days in the past 30 days. Frequent mental distress is associated with poor health behaviors, increased use of health services, mental disorders, chronic disease, and limitations in daily life. 1

During the COVID-19 pandemic, isolation, disconnect, disrupted routines, and diminished health services greatly impacted the lives and mental well-being of people with disabilities. 2

Call your healthcare provider if stress gets in the way  of your daily activities for several days in a row. Free and confidential  resources can also help you or a loved one connect with a skilled, trained counselor in your area.

It’s Okay Not to Feel Okay

Everyone reacts differently to stressful situations. How you respond to stressful situations, such as the COVID-19 pandemic, can depend on your background, your support systems (e.g., family or friends), your financial situation, your health and emotional background, the community you live in, and many other factors.

People with disabilities or developmental delays may respond strongly to the stress of a crisis, particularly if they are also at higher risk for serious illness from COVID-19 and other respiratory viruses (for example, older people and people of any age with certain underlying medical conditions).

How Are You Feeling?

We are often asked this question, and many of us say we’re “fine.” But this has been a difficult time lately, and emotions can be complex. You may be feeling sad, worried, or stressed.

It helps to stay positive and remind yourself of your strengths. Visit How Right Now for inspiration and resources to find what helps.

Healthy Ways to Cope with Stress

• Know  what to do if you are sick  and are concerned about COVID-19 . Contact a health provider before you start any self-treatment for COVID-19.
• Know where and how to get mental health treatment   and other support services and resources, including counseling or therapy (in person or through telehealth services).
• Take care of your emotional health.   Taking care of your emotional health  will help you think clearly and react to urgent needs to protect yourself and your family.
• Take breaks from watching, reading, or listening to news stories , including those on social media. Hearing about the pandemic repeatedly can be upsetting.
• Take deep breaths, stretch, or meditate
• Try to eat healthy, well-balanced meals
• Exercise regularly
• Get plenty of sleep
• Avoid excessive alcohol and drug use
• Make time to unwind . Try to do some other activities you enjoy.
• Connect with others . Talk with people you trust about your concerns and how you are feeling.  During times of increased social distancing, people can still maintain social connections and care for their mental health. Phone calls or video chats can help you and your loved ones feel socially connected, less lonely, or isolated.
• Connect with your community- or faith-based organizations . While social distancing measures are in place, consider connecting online, through social media, or by phone or mail.

Improving the Mental Health of People with Disabilities

CDC provides funding for two National Centers on Disability that focus on improving the quality of life for people living with disabilities.

Special Olympics’ Inclusive Health programming focuses on improving the physical and social-emotional well-being of people with intellectual disabilities by increasing inclusion in health care, wellness, and health systems for Special Olympics athletes and others with intellectual disabilities.

“I learned relaxation techniques and now always try these when I find myself overwhelmed. I would recommend these strategies to others, too. A strong mind is an important part to a happy body,” shares Kayte Barton, a Special Olympics athlete from Minnesota.  Barton was a part of the Special Olympics committee to help develop emotional health programming for Special Olympics athletes across the world in its flagship  Special Olympics Healthy Athletes®  program.

Special Olympics’ Strong Mindfulness program offers free, 1-hour mindfulness sessions for people with intellectual disabilities and their  families . Participants learn deep breathing techniques, body awareness and progressive muscle relaxation, mindful movement, and guided meditation. They also receive a  Strong Minds Activity Guide designed to help them develop their coping skills in everyday life.

The National Center on Health, Physical Activity and Disability (NCHPAD) seeks to help people with disabilities and other chronic health conditions achieve health benefits through increased participation in all types of physical and social activities. NCHPAD’s M.E.N.T.O.R program , which stands for Mindfulness, Exercise and Nutrition to Optimize Recovery, takes a holistic approach to restoring, improving, and protecting health. The program divides health into three domains: physical, mental, and emotional.  Through this program, people who have acquired a new disability (e.g., spinal cord injury, stroke, traumatic brain injury), a new diagnosis (e.g., multiple sclerosis, Parkinson’s disease), or have a congenital condition (e.g., cerebral palsy, spina bifida) learn the many ways life can be enhanced through health and wellness activities.

Disability and Mental Health Resources

• Coping with Stress
• Healthy Living
• National Centers on Disability
• CDC Disability and Health Promotion
• CDC National Center on Birth Defects and Developmental Disabilities

As CDC honors International Day of Persons with Disabilities, we ask that you join us in being a part of the global movement to change attitudes toward, and promote the inclusion of, people with disabilities.

• Cree RA, Okoro CA, Zack MM, Carbone E (2020). Frequent Mental Distress Among Adults by Disability Status, Disability Type, and Selected Characteristics – United States 2018 . Morbidity and Mortality Weekly Report (MMWR).
• International Day of People with Disabilities. Accessed November 17, 2020. https://idpwd.org/event/idpwd2020/
• Policy Makers
• CDC Employees and Reasonable Accommodations (RA)

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• v.1(1); 2002 Feb

Understanding the impact of stigma on people with mental illness

Patrick w corrigan.

1 University of Chicago Center for Psychiatric Rehabilitation and Chicago Consortium for Stigma Research, 7230 Arbor Drive, Tinley Park, IL 60477, USA

AMY C WATSON

Many people with serious mental illness are challenged doubly. On one hand, they struggle with the symptoms and disabilities that result from the disease. On the other, they are challenged by the stereotypes and prejudice that result from misconceptions about mental illness. As a result of both, people with mental illness are robbed of the opportunities that define a quality life: good jobs, safe housing, satisfactory health care, and affiliation with a diverse group of people. Although research has gone far to understand the impact of the disease, it has only recently begun to explain stigma in mental illness. Much work yet needs to be done to fully understand the breadth and scope of prejudice against people with mental illness. Fortunately, social psychologists and sociologists have been studying phenomena related to stigma in other minority groups for several decades. In this paper, we integrate research specific to mental illness stigma with the more general body of research on stereotypes and prejudice to provide a brief overview of issues in the area.

The impact of stigma is twofold, as outlined in Table ​ Table1. 1 . Public stigma is the reaction that the general population has to people with mental illness. Self-stigma is the prejudice which people with mental illness turn against themselves. Both public and self-stigma may be understood in terms of three components: stereotypes, prejudice, and discrimination. Social psychologists view stereotypes as especially efficient, social knowledge structures that are learned by most members of a social group ( 1 - 3 ). Stereotypes are considered "social" because they represent collectively agreed upon notions of groups of persons. They are "efficient" because people can quickly generate impressions and expectations of individuals who belong to a stereotyped group ( 4 ).

Comparing and contrasting the definitions of public stigma and self-stigma

The fact that most people have knowledge of a set of stereotypes does not imply that they agree with them ( 5 ). For example, many persons can recall stereotypes about different racial groups but do not agree that the stereotypes are valid. People who are prejudiced, on the other hand, endorse these negative stereotypes ("That's right; all persons with mental illness are violent!") and generate negative emotional reactions as a result ("They all scare me!") ( 1 , 3 , 6 ). In contrast to stereotypes, which are beliefs, prejudicial attitudes involve an evaluative (generally negative) component ( 7 , 8 ). Prejudice also yields emotional responses (e.g., anger or fear) to stigmatized groups.

Prejudice, which is fundamentally a cognitive and affective response, leads to discrimination, the behavioral reaction ( 9 ). Prejudice that yields anger can lead to hostile behavior (e.g., physically harming a minority group) ( 10 ). In terms of mental illness, angry prejudice may lead to withholding help or replacing health care with services provided by the criminal justice system ( 11 ). Fear leads to avoidance; e.g., employers do not want persons with mental illness nearby so they do not hire them ( 12 ). Alternatively, prejudice turned inward leads to self-discrimination. Research suggests self-stigma and fear of rejection by others lead many persons to not pursuing life opportunities for themselves ( 13 , 14 ). The remainder of this paper further develops examples of public and self-stigma. In the process, we summarize research on ways of changing the impact of public and self-stigma.

PUBLIC STIGMA

Stigmas about mental illness seem to be widely endorsed by the general public in the Western world. Studies suggest that the majority of citizens in the United States ( 13 , 15 - 17 ) and many Western European nations ( 18 - 21 ) have stigmatizing attitudes about mental illness. Furthermore, stigmatizing views about mental illness are not limited to uninformed members of the general public; even well-trained professionals from most mental health disciplines subscribe to stereotypes about mental illness ( 22 - 25 ).

Stigma seems to be less evident in Asian and African countries ( 26 ), though it is unclear whether this finding represents a cultural sphere that does not promote stigma or a dearth of research in these societies. The available research indicates that, while attitudes toward mental illness vary among non-Western cultures ( 26 , 27 ), the stigma of mental illness may be less severe than in Western cultures. Fabrega ( 26 ) suggests that the lack of differentiation between psychiatric and non-psychiatric illness in the three great non-Western medical traditions is an important factor. While the potential for stigmatization of psychiatric illness certainly exists in non-Western cultures, it seems to primarily attach to the more chronic forms of illness that fail to respond to traditional treatments. Notably, stigma seems almost nonexistent in Islamic societies ( 26 - 28 ). Cross-cultural examinations of the concepts, experiences, and responses to mental illness are clearly needed.

Several themes describe misconceptions about mental illness and corresponding stigmatizing attitudes. Media analyses of film and print have identified three: people with mental illness are homicidal maniacs who need to be feared; they have childlike perceptions of the world that should be marveled; or they are responsible for their illness because they have weak character ( 29 - 32 ). Results of two independent factor analyses of the survey responses of more than 2000 English and American citizens parallel these findings ( 19 , 33 ):

• fear and exclusion: persons with severe mental illness should be feared and, therefore, be kept out of most communities;
• authoritarianism: persons with severe mental illness are irresponsible, so life decisions should be made by others;
• benevolence: persons with severe mental illness are childlike and need to be cared for.

Although stigmatizing attitudes are not limited to mental illness, the public seems to disapprove persons with psychiatric disabilities significantly more than persons with related conditions such as physical illness ( 34 - 36 ). Severe mental illness has been likened to drug addiction, prostitution, and criminality ( 37 , 38 ). Unlike physical disabilities, persons with mental illness are perceived by the public to be in control of their disabilities and responsible for causing them ( 34 , 36 ). Furthermore, research respondents are less likely to pity persons with mental illness, instead reacting to psychiatric disability with anger and believing that help is not deserved ( 35 , 36 , 39 ).

The behavioral impact (or discrimination) that results from public stigma may take four forms: withholding help, avoidance, coercive treatment, and segregated institutions. Previous studies have shown that the public will withhold help to some minority groups because of corresponding stigma ( 36 , 40 ). A more extreme form of this behavior is social avoidance, where the public strives to not interact with people with mental illness altogether. The 1996 General Social Survey (GSS), in which the Mac Arthur Mental Health Module was administered to a probability sample of 1444 adults in the United States, found that more than a half of respondents are unwilling to: spend an evening socializing, work next to, or have a family member marry a person with mental illness ( 41 ). Social avoidance is not just self-report; it is also a reality. Research has shown that stigma has a deleterious impact on obtaining good jobs ( 13 , 42 - 44 ) and leasing safe housing ( 45 - 47 ).

Discrimination can also appear in public opinion about how to treat people with mental illness. For example, though recent studies have been unable to demonstrate the effectiveness of mandatory treatment ( 48 , 49 ), more than 40% of the 1996 GSS sample agreed that people with schizophrenia should be forced into treatment ( 50 ). Additionally, the public endorses segregation in institutions as the best service for people with serious psychiatric disorders ( 19 , 51 ).

STRATEGIES FOR CHANGING PUBLIC STIGMA

Change strategies for public stigma have been grouped into three approaches: protest, education, and contact ( 12 ). Groups protest inaccurate and hostile representations of mental illness as a way to challenge the stigmas they represent. These efforts send two messages. To the media: STOP reporting inaccurate representations of mental illness. To the public: STOP believing negative views about mental illness. Wahl ( 32 ) believes citizens are encountering far fewer sanctioned examples of stigma and stereotypes because of protest efforts. Anecdotal evidence suggests that protest campaigns have been effective in getting stigmatizing images of mental illness withdrawn. There is, however, little empirical research on the psychological impact of protest campaigns on stigma and discrimination, suggesting an important direction for future research.

Protest is a reactive strategy; it attempts to diminish negative attitudes about mental illness, but fails to promote more positive attitudes that are supported by facts. Education provides information so that the public can make more informed decisions about mental illness. This approach to changing stigma has been most thoroughly examined by investigators. Research, for example, has suggested that persons who evince a better understanding of mental illness are less likely to endorse stigma and discrimination ( 17 , 19 , 52 ). Hence, the strategic provision of information about mental illness seems to lessen negative stereotypes. Several studies have shown that participation in education programs on mental illness led to improved attitudes about persons with these problems ( 22 , 53 - 56 ). Education programs are effective for a wide variety of participants, including college undergraduates, graduate students, adolescents, community residents, and persons with mental illness.

Stigma is further diminished when members of the general public meet persons with mental illness who are able to hold down jobs or live as good neighbors in the community. Research has shown an inverse relationship between having contact with a person with mental illness and endorsing psychiatric stigma ( 54 , 57 ). Hence, opportunities for the public to meet persons with severe mental illness may discount stigma. Interpersonal contact is further enhanced when the general public is able to regularly interact with people with mental illness as peers.

SELF-STIGMA

One might think that people with psychiatric disability, living in a society that widely endorses stigmatizing ideas, will internalize these ideas and believe that they are less valued because of their psychiatric disorder. Self-esteem suffers, as does confidence in one's future ( 7 , 58 , 59 ). Given this research, models of self-stigma need to account for the deleterious effects of prejudice on an individual's conception of him or herself. However, research also suggests that, instead of being diminished by the stigma, many persons become righteously angry because of the prejudice that they have experienced ( 60 - 62 ). This kind of reaction empowers people to change their roles in the mental health system, becoming more active participants in their treatment plan and often pushing for improvements in the quality of services ( 63 ).

Low self-esteem versus righteous anger describes a fundamental paradox in self-stigma ( 64 ). Models that explain the experience of self-stigma need to account for some persons whose sense of self is harmed by social stigma versus others who are energized by, and forcefully react to, the injustice. And there is yet a third group that needs to be considered in describing the impact of stigma on the self. The sense of self for many persons with mental illness is neither hurt, nor energized, by social stigma, instead showing a seeming indifference to it altogether.

We propose a situational model that explains this paradox, arguing that an individual with mental illness may experience diminished self-esteem/self-efficacy, righteous anger, or relative indifference depending on the parameters of the situation ( 64 ). Important factors that affect a situational response to stigma include collective representations that are primed in that situation, the person's perception of the legitimacy of stigma in the situation, and the person's identification with the larger group of individuals with mental illness. This model has eventual implications for ways in which persons with mental illness might cope with self-stigma as well as identification of policies that promote environments in which stigma festers.

CONCLUSIONS

Researchers are beginning to apply what social psychologists have learned about prejudice and stereotypes in general to the stigma related to mental illness. We have made progress in understanding the dimensions of mental illness stigma, and the processes by which public stereotypes are translated into discriminatory behavior. At the same time, we are beginning to develop models of self-stigma, which is a more complex phenomenon than originally assumed. The models developed thus far need to be tested on various sub-populations, including different ethnic groups and power-holders (legislators, judges, police officers, health care providers, employers, landlords). We are also learning about stigma change strategies. Contact in particular seems to be effective for changing individual attitudes. Researchers need to examine whether changes resulting from anti-stigma interventions are maintained over time.

All of the research discussed in this paper examines stigma at the individual psychological level. For the most part, these studies have ignored the fact that stigma is inherent in the social structures that make up society. Stigma is evident in the way laws, social services, and the justice system are structured as well as ways in which resources are allocated. Research that focuses on the social structures that maintain stigma and strategies for changing them is sorely needed.

Disability Studies: Foundations & Key Concepts

This non-exhaustive reading list highlights some of the key debates and conceptual shifts in disability studies.

Disability studies emerged out of the disability civil rights movement in the late twentieth century. Early scholarship distinguishes the medical model of disability, which locates physical and mental impairments in individual bodies, from the social model, which understands the world as disabling people. The social model names both architectural and attitudinal barriers as the cause of disablement. Over the last few decades, the field has expanded to include individuals with a wide range of disabilities—not just physical conditions, but also mental and chronic ones.

This list, far from exhaustive, highlights some of the key debates and conceptual shifts in the field.  In addition to showcasing disability studies’ interdisciplinary focus, the list traces the relationship between D.S. and other minority fields of study. At its broadest, disability studies encourages scholars to value disability as a form of cultural difference. As the sources below reveal, ability should not be the default when it comes to human worth.

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Asch, Adrienne. “Recognizing Death while Affirming Life: Can End of Life Reform Uphold a Disabled Person’s Interest in Continued Life?” The Hastings Center Report , 2005

Bioethics scholar Adrienne Asch is one of the first scholars to bring a disability studies approach to bioethics. This essay addresses U.S. policy regarding decisions for end-of-life treatment and, more broadly, it critiques discourse surrounding “quality of life.” Asch attacks the slogan “better off dead than disabled” by showing how disability does not necessarily diminish one’s life. Instead, she argues, healthcare practitioners should focus on forms of care that give disabled people independence. She also offers pragmatic suggestions for how caretakers can affirm the humanity of patients receiving end-of-life treatment.

Baynton, Douglas. “Slaves, Immigrants, and Suffragists: The Uses of Disability in Citizenship Debates.” PMLA , 2005

Douglas Baynton’s groundbreaking essay foregrounds disability in accounts of American history. He assesses three U.S. debates regarding citizenship: the civil rights movement, women’s suffrage, and immigration legislation. This essay considers how disability has been used as a justification for the oppression of marginalized populations. For example, slaves were said to become “crazy” if they were granted freedom. Women were often described as mentally incapable of receiving an education. And immigrants have been cast as disabled due to racial difference. Baynton explores how attending to disability in its own right (rather than as a symptom of misogyny or racism) enables an intersectional analysis.

Brueggemann, Brenda Jo, Rosemarie Garland-Thomson, Georgina Kleege. “What Her Body Taught (Or, Teaching about and with a Disability): A Conversation.” Feminist Studies , 2005

Written from the perspective of three female scholars with disabilities, this essay is one of the first pieces of scholarship to address the presence of disabled faculty in the classroom. Brueggemann, Garland-Thomson, and Kleege explore the tension between wanting their disabilities to be normalized, but also wanting them to be present in students’ minds. In addition to discussing the difficulty of disclosure in the classroom, they explore how educators might adopt different approaches to teaching to accommodate instructors’ disabilities.

Davis, Lennard. “Crips Strike Back: The Rise of Disability Studies.” American Literary History , 1999

This essay reviews three publications that address disability studies from a humanities-based perspective. While D.S. first emerged in the social sciences, Davis makes a case for the centrality of disability studies scholarship in literary studies. More broadly, he proposes that disability studies should no longer be considered a narrow or specialized field. It’s applicable to us all.

Donaldson, Elizabeth J. “The Corpus of the Madwoman: Toward a Feminist Disability Studies Theory of Embodiment and Mental Illness.” NWSA Journal , 2002

This essay takes up the figure of the madwoman in literature. Adopting a feminist disability studies approach, Donaldson critiques the way feminist scholars read madwomen as merely symptomatic of patriarchal oppression, which discounts the reality of mental disability. She is resistant to framing disability as a metaphor and advocates for readings that consider disability alongside questions of gender.

Erevelles, Nirmala. “Race.” Keywords for Disability Studies (2015)

This short essay gives an overview of the relationship between disability studies and critical race studies. Erevelles shows how disability has been aligned with race. However, analogizing race to disability (or saying, “disability is like race”) eliminates the specificity of both identity categories. She uses special education as an example because it is a site where racial segregation takes place on the premise of disability. By attending to disabled people of color, she argues that we can achieve a more nuanced analysis, which accounts for how social forces like poverty and involuntary institutionalization exacerbate different forms of social marginalization.

Garland-Thomson, Rosemarie. “Feminist Disability Studies.” Signs , 2005

In placing feminist studies and disability studies in conversation, Garland-Thomson argues that both fields work to de-naturalize assumptions about embodiment and social roles. Her essay explores a range of pressing social issues, including selective abortion, caretaking, and reproductive rights.

Ginsburg, Faye and Rayna Rapp. “Disability Worlds.” Annual Review of Anthropology , 2013

Ginsburg and Rapp call for a critical approach to disability in the field of anthropology. Bridging the gap between the medical and anthropological fields, they shift toward understanding impairment as both environmental and cultural. They also consider what ethnography can bring to questions of disability within anthropological study.

Hershey, Laura. “Disabled Women Organize Worldwide.” o ff our backs , 2003

Recounting events from the NGO Forum on Women in China (1995) and the International Leadership Forum for Women with Disabilities in Maryland (1996), disability activist Laura Hershey moves beyond Western definitions of disability to offer a global perspective. In addition to showing how disabled women are doubly discriminated against, Hershey outlines how gender can influence the international movement for disability rights. She also considers how issues like poverty and illiteracy speak to the feminist and disability movements.

James, Jennifer C. and Cynthia Wu. “Editors’ Introduction: Race, Ethnicity, Disability, and Literature: Intersections and Interventions.” MELUS , 2006

This essay brings ethnic studies into conversation with debates regarding disability representation. From the nineteenth-century freakshow to forced sterilization, people of color have been disproportionately disabled, and James and Wu call for an intersectional approach to these complex subjectivities.

Kleege, Georgina. “Blind Rage: An Open Letter to Helen Keller.” Southwest Review , 1998

In this more personal essay, Kleege interrogates Helen Keller’s status as a disability icon. Kleege critiques the way disability has been individualized, refuting both tragic and triumphant representations of impairment. In describing her experience navigating everyday life as a blind woman, Kleege attends to the realities of living in a world not made for disabled people.

Kudlick, Catherine. “Disability History: Why We Need Another ‘Other.’” The American Historical Review , 2003

In this groundbreaking essay, Kudlick moves to situate disability studies in historical scholarship. Reframing disability as valuable, she argues that a renewed attention to bodily and mental impairments can revise our accounts of nearly all events in history—from women’s rights to labor movements. Her essay offers a comprehensive overview of books and articles pertaining to disability history, and, more specifically, deaf history.

Linker, Beth. “On the Borderland of Medical and Disability History: A Survey of Both Fields.” Bulletin of the History of Medicine, 2013

This essay addresses why the history of medicine and disability studies fail to interact. Linker begins by critiquing disability studies’ resistance to medical discourse. She argues that certain disabled people, especially those who are living with chronic conditions, often rely heavily on medical care, which is why the “medical model” should not be so readily dismissed. In turn, while disability history is typically understood as different from medical history, especially in the U.S., Linker argues for a greater need for cross-disciplinary collaboration.

Linton, Simi. “Reassigning Meaning.” Claiming Disability: Knowledge and Identity ,1988

One of the most foundational essays in the field of disability studies, Linton outlines how language has been important to naming disability as a political rather than medical category. She also addresses the problem of “overcoming rhetoric,” which fails to address disabled people’s need for access.

McRuer, Robert. “Crip Eye for the Normate Guy: Queer Theory and the Discipling of Disability Studies.” PMLA , 2005

McRuer is one of the first scholars to assess the relationship between disability and queerness. In this essay, he analyzes how the popular show The Queer Eye for the Straight Guy normalizes the disabled body. While representations of queer life often resist disability, he argues that queer and disability studies share a resistance to normalization, which should be embraced in future scholarship and activism.

Price, Margaret. Mad at School: Rhetorics of Mental Disability and Academic Life . University of Michigan, 2011

Price offers one of the first substantive accounts of mental disability, which has come belatedly to studies of physical disability. She focuses on higher education as a site that stigmatizes mental disability in its focus on rationality, cohesion, and cognitive agility. Her book offers a range of suggestions, many of which are pedagogical, for how mental disability might revitalize academic life.

Siebers, Tobin. “Disability in Theory: From Social Constructionism to the New Realism of the Body.” American Literary History , 2001

Siebers critiques the social model of disability, arguing that it fails to account for the experience of individual bodies. His term “the new realism of the body” calls for an assessment of the bodily effects of disability, which often cannot be altered through environmental transformations alone.

Wendell, Susan. “Unhealthy Disabled: Treating Chronic Illness as Disabilities.” Hypatia , 2001 

This article broadens the definition of disability to include individuals with chronic illnesses.  While people in the disability community often distinguish themselves from people who are ill, not all disabled people, she observes, are healthy. Wendell questions some of the main assumptions in disability activism and scholarship regarding social justice and reform. Dismantling the environmental effects of disablement will not always eliminate a body’s suffering, she argues.

Williamson, Bess. “Access.” Keywords for Disability Studies (2015)

This short essay gives a comprehensive account of the history of access and why it is a key term in D.S. Williamson argues that paying attention to access turns our focus away from the individual, highlighting instead the disabling makeup of the social world. Although access is easy to define, Williamson notes that it is hard to implement in practice because disabled people have conflicting needs.

Editor’s Note: This list has been updated to include publication dates.

JSTOR is a digital library for scholars, researchers, and students. JSTOR Daily readers can access the original research behind our articles for free on JSTOR.

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Tips for Writing With and About Mental Illness

Managing the awkward waltz between thoughts, writing tools, and written words..

Posted September 10, 2021 | Reviewed by Ekua Hagan

• Mental illness can make the process of writing more challenging.
• In writing, mental health issues can be managed just as in other aspects of life.
• Although often challenging, writing with and about mental illness can bring great satisfaction.

Writing is tricky. It's difficult for anyone to maintain the awkward waltz between our thoughts, our writing implements, and the words on the page. So one can only imagine the chaos that can result when mental illness derails this delicate dance. I've recently been revising a short mystery novel for publication, and, throughout the whole process, I've been vividly aware of how continually managing my obsessive-compulsive disorder impacts my craft.

Overcoming Writer’s Block

The biggest hurdle to overcome is one of the most challenging for anyone trying to write — that toxic blend of anxiety , inertia, perfectionism , and procrastination commonly known as writer’s block. A blank page is a formidable obstacle for any writer, but mental disability can make things significantly more challenging. Depression casts the whole endeavor in a shroud of futility; anxiety second-guesses every word on the page. I suspect anyone who experiences mental illness has a story about its interference with written composition.

OCD and obsessive symptoms can aggravate writer's block, and there's one bit of advice I believe can apply to anyone struggling with creative output and mental disability: You absolutely must put words — any words — on that page. Any words at all. Even a paragraph, even a sentence, even if turns out to be godawful. Because a godawful paragraph can be reworked into something better, and may even contain a little nugget of value — a clever metaphor, an insight into a character, even just a few words that sound good in sequence.

The objective here is to establish a positive feedback loop where creative output — any creative output — is worth lavish celebration. So set the most modest goal imaginable, steel yourself for the mighty endeavor of writing exactly four complete sentences, and then treat yourself to a hot bath and a pint of ice cream. If your initial standards for productivity are that low, and the positive reinforcement so ridiculously high, you can build from that to establish a more sustainable writing routine.

Facing the Challenge of Writing About Mental Illness

Once you've built up some momentum with your writing, you may encounter another, potentially more dangerous complication: Writing about mental illness sometimes causes us to elaborate and expand on it, exacerbating the illness in the process. I know we've all had those frustrating moments when trying to talk through our negative thoughts (alone or with others) backfires and makes things worse; an obvious example is when a friend tries to convince you to cheer up and you end up arguing yourself into an even more depressed mood.

Writing about mental illness has similar dangers. In Such Stuff As Dreams : The Psychology of Fiction , Keith Oatley observes that composing and revising a piece of writing can simulate experiencing its contents: "a writer can read what she or he has written, and the writing will start up and sustain for him or her, the dream with its emotional aspects." Transcribing the symptoms of mental illness can expand a short, discouraging conversation into a lengthy discourse; it can take vague anxiety and externalize it, giving it greater form and power. Suddenly, you've stopped arguing with mental illness, and you've started collaborating with it. Writing about mental illness can sometimes become a conduit for mental illness. If writing is making your symptoms worse, then you absolutely need to put down your work for a while.

Another important point to clarify — in "A Message to Creative Young People," I wrote about the dangerous cliché that pain inspires greatness, that mental illness somehow allows artists to create work that is "deep," "profound," "raw," or "truthful." This idea is nonsense. Mental illness does not create great writers; if a writer produces some exceptional work on the subject of mental illness, well, that's because skilled writers can write well about any subject they choose. If you find something painful to write about, there's still no guarantee your efforts will produce worthwhile results. I'm sure you've been told that you're more than your mental illness, and this applies to writing as well. Don't let illness define your creativity .

Requesting and Processing Feedback

My final bit of advice applies when you're finally ready to share your work with others and get feedback. This is always a little intimidating, but mental disability can add a further complication: An attempt to illuminate the psychological landscape of mental illness is open to misinterpretation by neurotypical readers. Such misinterpretations can range from being mildly confusing to profoundly demoralizing. As a personal example, I once workshopped a story that attempted to depict a realistically depressed narrator, based on my own experiences; my instructor and classmates assumed my character was "crazy" and "hallucinating everything" and gleefully tore the whole story to shreds.

Thankfully, that kind of malice is rare, but you should be aware that readers who do not have a personal, internal perspective on mental illness may not have the context to understand your work, and the miscommunication that results can be frustrating and demoralizing — especially if you don't want to disclose your condition to your readers. Sometimes the best thing to do is to state upfront that you're attempting to write a character with a specific mental disability — whether or not you explain that you share this disability is up to you — and ask them for specific feedback on whether the character’s symptoms are effectively conveyed. You might still get some insensitive or misguided comments, but generally, if you clarify your intentions right off the bat and indicate that you sincerely want feedback to improve the work, people will be sympathetic and eager to help.

While mental illness can make writing somewhat more complicated, the challenges can be managed just as in any other area of life. It's not always easy, and the way that mental disability compounds the difficulties of the writing life can sometimes feel overwhelming. But I truly believe that, if you have something to say about living with disability, you owe it to yourself to try to get it on the page. Even if that's as far as it goes, even if you never share your writing with another living soul — that's still an accomplishment to be proud of.

Copyright, Fletcher Wortmann, 2021.

Keith Oatley, Such Stuff As Dreams: The Psychology of Fiction . Wiley-Blackwell, Malden MA. 2011. p. 14.

Fletcher Wortmann is the author of Triggered: A Memoir of Obsessive-Compulsive Disorder .

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Should You Talk About Mental Health in College Essays?

This article was written based on the information and opinions presented by Shravya Kakulamarri in a CollegeVine livestream. You can watch the full livestream for more info.

What’s Covered:

What are you required to disclose in your application.

• Should You Include Mental Health History in Your Application?

How to Talk about Mental Health in College Applications

Taking care of your health in college.

Many students wonder if they should discuss mental health or disability in their college applications. Mental health history or a disability might be an integral part of who a student is, but that doesn’t necessarily make it relevant to a college application. Keep in mind that it is actually illegal for colleges to ask for these types of details about your life because it can be considered discrimination. So, colleges will never directly ask if you’ve had any sort of mental health issue or if you’ve ever had a disability. Based on this reason alone, you are not required to disclose mental or physical health concerns on your application. 

Disclosing your mental or physical health is strictly a matter of personal choice. If you leave out this information, it is not lying and 100% within your legal right to do so. 

Should You Include Mental Health History in Your Application? 

Before you choose whether to disclose your history of mental health or disability, you should think about the purpose of a college application. Everything that you put in your college application should contribute to an overall positive image of who you are as a student and member of the community. 

You usually don’t want to hide integral parts of who you are, but you also don’t want to be sharing challenges that are not going to strengthen your application. This is true not only for mental health or disabilities but also for academics, extracurriculars, and other experiences. Normally, students don’t bring up the time that they got a C or D in a class on their application. Everything that you include on your application should paint the most positive image of you possible. You always want to put your best foot forward and keep the focus on your strengths. 

You don’t want colleges to doubt your ability to succeed and perform well under pressure. If you mention any mental health concerns, they might use that as a way to question if you will do well at their school and be able to handle their rigorous course load. While colleges are supportive of their students’ mental health challenges and provide resources and services, you don’t want their first impression of you on your application to be something that makes them uncertain of your abilities. So, keep this in mind when deciding whether to disclose your mental health history. 

If you decide to include your mental health or disability history in your application , there are specific aspects of your experience that you should focus on. Rather than talking about the mental illness itself, focus more on the recovery and management aspects and what you have learned from the experience. 

Discuss things like how you have grown and the coping methods that you have cultivated due to the experience. These will give the admissions officer an idea of the types of strategies that you’ll likely use in college anytime that you encounter a stressful situation. 

Overall, if you choose to talk about mental health in your applications, focus on the learning and growth that you’ve gained because of it. 

Mental health is an important part of your well-being, and it’s essential to start good habits in high school . This way, you’ll be better prepared to cope when you face new challenges in college. You’ll likely be experiencing living on your own for the first time and have new responsibilities without the same support system that you had at home. It’s crucial to learn how to take care of your mental health early.

Fortunately, most students will have many resources at college to help them through mental health challenges. If you’re dealing with any mental health struggles, there is usually an office of wellness where you can schedule a time to see a therapist. This is usually provided with your school’s health insurance. If this is something that you are concerned about for your college experience, make sure to look into what mental health resources each college provides before applying. 

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What to do if someone is experiencing a mental health crisis

If you or a loved one needs assistance or is thinking of suicide, please get help immediately. these resources below offer immediate help., 988 suicide & crisis lifeline, call: 9-8-8, available 24 hours a day, 7 days a week..

Alternatively, you can visit 988 Suicide & Crisis Lifeline to talk via phone or live webchat.

The Mental Health Association of Maryland provides free informational resources, which are currently available by download or by mail.

Maryland Parity Project

Mental and psychological disabilities are among the conditions that can qualify for benefits from the Social Security Administration (SSA). You may qualify with severe depression, bipolar disorder, an anxiety disorder, or another mental illness that prevents you from maintaining gainful employment.

Social Security disability benefits can cover everyday living expenses, medical bills, and other financial obligations. Benefits are paid monthly and can alleviate many of your financial worries, making it possible for you to get by without income from employment.

Benefits for Disabled Adults

The SSA pays disability benefits through two separate programs:

• Social Security Disability Insurance (SSDI)
• Supplemental Security Income (SSI)

SSDI is available to disabled adult workers who have paid Social Security taxes, while SSI is a need-based program only available to applicants that meet strict limitations on income and asset holdings. If you have never worked due to your mental illness, you will not qualify for SSDI. If you have financial support from friends or family, you will not qualify for SSI.

Basic Eligibility for Benefits

The SSA must see that you meet basic eligibility requirements before further reviewing your application for benefits. This basic eligibility includes having:

• A formal diagnosis of a potentially disabling condition
• A diagnosed condition that will disable you for 12 months of longer

After the SSA confirms that you meet basic eligibility, they will then move on to review your medical condition in detail and verify that you meet all program requirements for SSDI and/or SSI.

Medical Qualifying with a Mental Illness

The SSA conducts a detailed review of your medical records to determine your eligibility for benefits. During this review, they try to match your records to a disability listing in the “Blue Book.” The Blue Book is the SSA’s medical guide that is used to evaluate every disability application.

Disability listings outline the severity level requirements and the specific medical evidence needed to support a claim for benefits. Mental illnesses appear in Section 12.00 and include:

• 12.06, Anxiety-related Disorders – you may qualify under this listing if you have a severe phobia, post-traumatic stress, a panic disorder, or another anxiety-related condition.
• 12.08, Personality Disorders – this is the listing under which you may qualify if you have severe, clinical depression.
• 12.04, Affective Disorders – if you have bipolar disorder, your application will be reviewed under this listing.

Extensive medical records are necessary to qualify, including:

• Information on your diagnosis, ideally from a psychiatrist or psychologist
• Brain scans or other evidence of physical abnormalities that document an organic cause for symptoms, if applicable
• Treatment records, documenting medications, therapy, and other management methods used and their effects
• Thoroughly documented episodes of increased symptoms or periods of decompensation
• Well documented affects of your symptoms on your everyday abilities or “activities of daily living” (ALDs)

Activities of daily living can include many tasks, from being able to dress yourself, to interacting with others. If you can prove that your mental illness makes it nearly impossible for you to function outside of your place of living, you will have a strong chance of being approved.

For most mental illnesses, you will need to prove that you have been taking medication for two years or more and have not seen any improvement in your condition.

It can be quite challenging to get approved for benefits with a mental illness, especially if you do not precisely meet a Blue Book listing. Be prepared for a tough fight to get approved. Work closely with your doctor when applying for benefits. He or she can help you understand Blue Book requirements and can ensure your medical records contain the types of details necessary for the SSA to accurately evaluate your claim for benefits.

For the best chance of getting approved, be sure to gather the following information:

• ALL medical records. This includes everything from hospitalizations to therapist sessions.
• Any professional’s opinion on the matter. This can include doctors, psychologists, psychiatrists, therapists, or anyone else who has helped you with your mental illness.
• A list of the medications you’ve been taking, whether or not they have improved your symptoms, and the negative side effects you experience from these medications.

Submitting an Application

If you’re applying only for SSDI, you can do so online, or you can apply at the SSA office nearest you. For SSI however, there is no online application available. This is because an interview is part of the standard application process, and must be completed in person, or under some circumstances, via phone.

Visit the SSA’s website to start your application online or call 1-800-772-1213 to schedule an appointment. There are more than 1300 locations across the US , so you are sure to find an office close to you.

After Approval

If you are approved for a mental illness, expect to have your case reviewed every year. Some applicants with conditions that will clearly not improve, such as paralysis, are reviewed every 7 years or so. But since mental illnesses can often be treated, you will expect yearly check-ins with the SSA. So long as your condition remains the same year-to-year, you will not later be denied disability benefits.

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Leslie Walker

Kevin Carlson, with nurse Joshua Lee (right) and respiratory therapist Eric Mathewson (left), watches a WWE match on October 2, 2023 in San Jose, Calif. Gabriel Torres hide caption

Kevin Carlson, with nurse Joshua Lee (right) and respiratory therapist Eric Mathewson (left), watches a WWE match on October 2, 2023 in San Jose, Calif.

From his seat in the stands, Kevin Carlson's eyes lock on a giant of a man straddling the top rope of the ring.

Carlson, a self-described WWE wrestling junkie who has cerebral palsy, boos the reviled wrestler along with the other 15,000 fans who pack the arena in downtown San Jose, Calif.

As the 62-year-old watches the giant fly across the ring landing on top of his opponent, a respiratory therapist suctions Carlson's lungs, and a nurse checks his catheter.

Carlson is here because his health care team snagged a row of wheelchair-accessible tickets, packed up extra ventilator batteries and oxygen tanks, and shuffled staffing schedules to free up three workers to accompany Carlson for the night.

Holistic health care like this is rare among the country's 2 million adults with developmental and intellectual disabilities.

Carlson's doctor, Clarissa Kripke , says this is what it looks like when health care "does better" by people with disabilities; it takes money, effort and, importantly, the conviction that sometimes physical health takes a second seat to joy. Kripke's goal is to provide care that extends beyond medical transactions.

Investigations

A hospital is suing to move a quadriplegic 18-year-old to a nursing home. she says no.

"Health care is about helping people to participate fully in their lives," Kripke said, "not just about curing disease."

A promise of 'less restrictive living' for people with disabilities

Twenty-five years ago this June, the Supreme Court's landmark Olmstead v. L.C. ruling slammed the door on a dark era in U.S. history: decades of states institutionalizing hundreds of thousands of people with disabilities like autism, Down syndrome and cerebral palsy.

Justice Ruth Bader Ginsburg wrote in the majority opinion that locking people away had denied them "the pleasure of ... less restrictive living."

Kevin Carlson enjoys the wrestling match in San Jose with a nurse and respiratory therapist. Gabriel Torres hide caption

Kevin Carlson enjoys the wrestling match in San Jose with a nurse and respiratory therapist.

Since then, the number of people in large, state-run facilities has plummeted from nearly 200,000 in the 1960s to below 20,000 today. People with Down syndrome now live close to 60 years on average, compared to just 26 years in 1950.

But according to the 30 sources Tradeoffs spoke to, the freedom to live fuller and healthier lives remains elusive for many.

One key culprit is the U.S. health care system. The evidence suggests that the patchwork of doctors, hospitals and insurers that has replaced institutions as people's go-to source for care is falling short, limiting people's independence and harming their health.

Patients too frequently meet doctors and nurses who are untrained and uncomfortable caring for them; struggle to enter inaccessible exam rooms; and encounter insurers who deny their requests for essential equipment.

A limited but troubling body of research captures this system's shortcomings, showing that these patients are less likely to get preventive care such as dental exams and mammograms , and are more likely to take avoidable trips to the emergency room.

"People with intellectual disabilities need to be treated and respected the same way that we do every other patient who shows up at the doctor," said University of Chicago public health researcher Harold Pollack. "We are a long way from that."

Kripke, a family physician and University of California, San Francisco professor, has devoted her career to blowing up the obstacles patients with disabilities face.

Over the last two decades, in collaboration with partners like the advocacy organization, The Arc San Francisco and the Health Plan of San Mateo , a county-run health insurer, Kripke has gradually reshaped care for adults with complex disabilities in the San Francisco Bay Area.

The doctor has turned the traditional primary care model inside out. She's ditched the typical rushed, 15-minute visits in cramped exam rooms, and instead heads out to the small group homes where her patients live.

House calls, said Kripke, allow her to ask questions like, "How do you want to spend your day? Where do you want to go? What do you want to do?"

Dr. Clarissa Kripke making a house call to the group home where Kevin Carlson lives. Kripke focuses on holistic care to give people with intellectual developmental disabilities the best quality of life possible. Leslie Walker/Tradeoffs hide caption

House calls and 'hidden work'

Kripke has developed a unique way to deliver care, particularly for those with complex medical needs.

She relies on staff in group homes — she calls them her eyes and ears — to monitor people's health and their progress on personal goals, like taking more outings or gaining life skills.

It's a level of attention that requires follow up and follow through, or what the doctor calls "hidden work" — coordinating with specialists or appealing insurance denials. Kripke estimates that for every hour of direct patient care, she spends another six on these other tasks — roughly triple what doctors caring for other types of patients spend.

Rather than billing for every test she runs or call that she makes, Kripke charges each patient's insurer or group home a flat monthly fee. She caps her patient-list at 100 people — less than 10% of the lengthy roster a typical primary care doctor manages.

Kripke's approach has paid off for Carlson. During a visit to his five-person group home in Redwood City last fall, Carlson said proudly that his weight had climbed from a dangerously-low 70 pounds to 111 since Kripke took over his care. Staff also slashed through insurer red tape to secure Carlson, a naturally gregarious guy, a speaking valve that helps him communicate while on his ventilator.

It's unclear if Kripke's model reduces spending; her program has yet to be studied. But perhaps the clearest sign it's a good deal: Group homes choose to pay her fee when, instead, their residents could get treated at local clinics for free.

Potentially, the longer Kripke keeps the most medically complex patients living in the community, rather than an institution, the bigger the payoff. Carlson's group home, for example, costs Medicaid and the state of California roughly $27,000 a month, whereas an intensive nursing facility — runs closer to $34,000 .

When problems land people like Carlson in the hospital, as his kidney stones sometimes can, Kripke keeps a close eye on her patients' care there, too, and believes that helps them get home sooner and in better shape. That, theoretically, could save taxpayer-funded programs like Medicaid and Medicare money.

More training and a better pay structure could spread the model

Kripke estimates some 50 other doctors in the country are honing innovative models to deliver high-quality care to this population. She, herself, has trained thousands of caregivers, advocates and providers.

Yet, it will be difficult for approaches like hers to spread more widely without more training for frontline clinicians. The workforce lacks both specialists for people with the most complex conditions and primary care providers with the insight to respectfully treat patients with disabilities.

"It's as hard today for adults with developmental disabilities to find attentive, loving, expert care as it was in the early 2000's when I was starting out," Kripke said.

A recent national survey of physicians found just 4 in 10 felt "very confident" in their ability to provide the same quality of care to patients with a disability as those without one. Only about 15% of U.S. medical schools have joined a national initiative to bolster training.

Without more pay, many clinicians may be reluctant to invest the extra time and training to do this work. A bipartisan House bill introduced in 2023 — the so-called HEADs UP Act — would boost certain payments for providers serving this population.

Ari Ne'eman , who served on the National Council on Disability during the Obama administration, said scaling work like Kripke's requires both insurers and providers to make big shifts.

"We really need additional training," he said, "And we need to ensure that [pay is] aligned with the amount of time it takes physicians to provide competent and accessible care to people with disabilities."

New federal rules signal hope

Kripke's approach is focused on caring for adults with the most medical needs — a small slice of the broader disability community. New and forthcoming federal regulations aim to improve care and inch closer to delivering more independence for all U.S. adults with developmental disabilities.

Starting last year, group homes began facing closer scrutiny over the amount of privacy and autonomy they offer residents, for example, locking their bedroom doors or setting their own schedules.

Federal officials expect to finalize rules this spring that target discriminatory policies like relying on the inaccessible medical equipment that still litters America's hospitals or putting people with disabilities at the end of the organ transplant line.

"It is critical that people be able to get in the door and that people be able to get on the table," said Alison Barkoff, who leads the Administration for Community Living at the U.S. Department of Health and Human Services. "The lack of accessibility has been a huge barrier to preventative health care."

People with disabilities can spend months — even years — wading through webs of approvals to get critical care, like more help at home or a new wheelchair. A regulation finalized this year to take effect in 2026 requires Medicaid and private Medicare insurance plans to make faster, more transparent decisions about whether they will cover these services.

'There's a waitlist for everything'

Better health care is one piece, advocates say, in their decades-long fight to help people with disabilities live more independently. What's also required is an expansion of a wide range of services, from housing to help preparing meals.

"There's a waitlist for everything when you have a disability," said Melissa Crisp-Cooper, who has cerebral palsy and works for The Arc San Francisco .

A lack of paid health aides who help people shower, shop and get to work have led to fewer options. "Because of low wages and a lack of respect," said Barkoff, "we are at a point where the vast majority of providers are turning down referrals and even closing services ."

Between 200,000 and 700,000 people are waiting for at least one service they need to live in the community, and some data suggest Black and Hispanic people are hardest hit.

Some family members of people with disabilities — and even doctors — frustrated by these resource constraints insist that a return to larger, institution-like settings is necessary.

"That's just not true," said Kripke.

Over her 20-year-career, she's seen enough proof that people can thrive outside of big institutions — even patients with the most complex needs, like wrestling fanatic Kevin Carlson.

"People didn't know that could be done before," said the doctor, but now that they do, the onus is on policymakers — and the health care system — to make living freer and fuller a reality for all.

This story comes from the health policy podcast Tradeoffs . Dan Gorenstein is Tradeoffs' executive editor, and Leslie Walker is a senior reporter/producer for the show, where a version of this story first appeared. Sign up for Tradeoffs' weekly newsletter to get more health policy reporting in your inbox.

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• Mental Health Essay

Essay on Mental Health

According to WHO, there is no single 'official' definition of mental health. Mental health refers to a person's psychological, emotional, and social well-being; it influences what they feel and how they think, and behave. The state of cognitive and behavioural well-being is referred to as mental health. The term 'mental health' is also used to refer to the absence of mental disease. 

Mental health means keeping our minds healthy. Mankind generally is more focused on keeping their physical body healthy. People tend to ignore the state of their minds. Human superiority over other animals lies in his superior mind. Man has been able to control life due to his highly developed brain. So, it becomes very important for a man to keep both his body and mind fit and healthy. Both physical and mental health are equally important for better performance and results.

Importance of Mental Health 

An emotionally fit and stable person always feels vibrant and truly alive and can easily manage emotionally difficult situations. To be emotionally strong, one has to be physically fit too. Although mental health is a personal issue, what affects one person may or may not affect another; yet, several key elements lead to mental health issues.

Many emotional factors have a significant effect on our fitness level like depression, aggression, negative thinking, frustration, and fear, etc. A physically fit person is always in a good mood and can easily cope up with situations of distress and depression resulting in regular training contributing to a good physical fitness standard. 

Mental fitness implies a state of psychological well-being. It denotes having a positive sense of how we feel, think, and act, which improves one’s ability to enjoy life. It contributes to one’s inner ability to be self-determined. It is a proactive, positive term and forsakes negative thoughts that may come to mind. The term mental fitness is increasingly being used by psychologists, mental health practitioners, schools, organisations, and the general population to denote logical thinking, clear comprehension, and reasoning ability.

 Negative Impact of Mental Health

The way we physically fall sick, we can also fall sick mentally. Mental illness is the instability of one’s health, which includes changes in emotion, thinking, and behaviour. Mental illness can be caused due to stress or reaction to a certain incident. It could also arise due to genetic factors, biochemical imbalances, child abuse or trauma, social disadvantage, poor physical health condition, etc. Mental illness is curable. One can seek help from the experts in this particular area or can overcome this illness by positive thinking and changing their lifestyle.

Regular fitness exercises like morning walks, yoga, and meditation have proved to be great medicine for curing mental health. Besides this, it is imperative to have a good diet and enough sleep. A person needs 7 to 9 hours of sleep every night on average. When someone is tired yet still can't sleep, it's a symptom that their mental health is unstable. Overworking oneself can sometimes result in not just physical tiredness but also significant mental exhaustion. As a result, people get insomnia (the inability to fall asleep). Anxiety is another indicator. 

There are many symptoms of mental health issues that differ from person to person and among the different kinds of issues as well. For instance, panic attacks and racing thoughts are common side effects. As a result of this mental strain, a person may experience chest aches and breathing difficulties. Another sign of poor mental health is a lack of focus. It occurs when you have too much going on in your life at once, and you begin to make thoughtless mistakes, resulting in a loss of capacity to focus effectively. Another element is being on edge all of the time.

It's noticeable when you're quickly irritated by minor events or statements, become offended, and argue with your family, friends, or co-workers. It occurs as a result of a build-up of internal irritation. A sense of alienation from your loved ones might have a negative influence on your mental health. It makes you feel lonely and might even put you in a state of despair. You can prevent mental illness by taking care of yourself like calming your mind by listening to soft music, being more social, setting realistic goals for yourself, and taking care of your body. 

Surround yourself with individuals who understand your circumstances and respect you as the unique individual that you are. This practice will assist you in dealing with the sickness successfully.  Improve your mental health knowledge to receive the help you need to deal with the problem. To gain emotional support, connect with other people, family, and friends.  Always remember to be grateful in life.  Pursue a hobby or any other creative activity that you enjoy.

What does Experts say

Many health experts have stated that mental, social, and emotional health is an important part of overall fitness. Physical fitness is a combination of physical, emotional, and mental fitness. Emotional fitness has been recognized as the state in which the mind is capable of staying away from negative thoughts and can focus on creative and constructive tasks. 

He should not overreact to situations. He should not get upset or disturbed by setbacks, which are parts of life. Those who do so are not emotionally fit though they may be physically strong and healthy. There are no gyms to set this right but yoga, meditation, and reading books, which tell us how to be emotionally strong, help to acquire emotional fitness. 

Stress and depression can lead to a variety of serious health problems, including suicide in extreme situations. Being mentally healthy extends your life by allowing you to experience more joy and happiness. Mental health also improves our ability to think clearly and boosts our self-esteem. We may also connect spiritually with ourselves and serve as role models for others. We'd also be able to serve people without being a mental drain on them. 

Mental sickness is becoming a growing issue in the 21st century. Not everyone receives the help that they need. Even though mental illness is common these days and can affect anyone, there is still a stigma attached to it. People are still reluctant to accept the illness of mind because of this stigma. They feel shame to acknowledge it and seek help from the doctors. It's important to remember that "mental health" and "mental sickness" are not interchangeable.

Mental health and mental illness are inextricably linked. Individuals with good mental health can develop mental illness, while those with no mental disease can have poor mental health. Mental illness does not imply that someone is insane, and it is not anything to be embarrassed by. Our society's perception of mental disease or disorder must shift. Mental health cannot be separated from physical health. They both are equally important for a person. 

Our society needs to change its perception of mental illness or disorder. People have to remove the stigma attached to this illness and educate themselves about it. Only about 20% of adolescents and children with diagnosable mental health issues receive the therapy they need. 

According to research conducted on adults, mental illness affects 19% of the adult population. Nearly one in every five children and adolescents on the globe has a mental illness. Depression, which affects 246 million people worldwide, is one of the leading causes of disability. If  mental illness is not treated at the correct time then the consequences can be grave.

One of the essential roles of school and education is to protect boys’ and girls' mental health as teenagers are at a high risk of mental health issues. It can also impair the proper growth and development of various emotional and social skills in teenagers. Many factors can cause such problems in children. Feelings of inferiority and insecurity are the two key factors that have the greatest impact. As a result, they lose their independence and confidence, which can be avoided by encouraging the children to believe in themselves at all times. 

To make people more aware of mental health, 10th October is observed as World Mental Health. The object of this day is to spread awareness about mental health issues around the world and make all efforts in the support of mental health.

The mind is one of the most powerful organs in the body, regulating the functioning of all other organs. When our minds are unstable, they affect the whole functioning of our bodies. Being both physically and emotionally fit is the key to success in all aspects of life. People should be aware of the consequences of mental illness and must give utmost importance to keeping the mind healthy like the way the physical body is kept healthy. Mental and physical health cannot be separated from each other. And only when both are balanced can we call a person perfectly healthy and well. So, it is crucial for everyone to work towards achieving a balance between mental and physical wellbeing and get the necessary help when either of them falters.

Home — Essay Samples — Literature — Of Mice and Men — The Theme of Disability and Mental Health in Of Mice and Men

The Theme of Disability and Mental Health in of Mice and Men

• Categories: Of Mice and Men

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Words: 1581 |

Pages: 3.5 |

Published: Jun 29, 2018

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Words: 1581 | Pages: 3.5 | 8 min read

Works Cited

• "1930-1950: New Therapy." Quest for a Cure. Missouri Archives, 2003. Web. 17 May 2016.
• "Mentally Challenged." TheFreeDictionary.com. N.p., n.d. Web. 17 May 2016.
• Steinbeck, John. Of Mice and Men. New York: Penguin, 1993. Print.
• "The History of Mental Illness." The History of Mental Illness. N.p., n.d. Web. 17 May 2016.

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There’s a Reason They’re Called ‘Gut’ Feelings

I n the 1800s, a French Canadian named Alexis St. Martin was shot in the stomach while at a fur trading post, when someone’s musket accidentally fired at close range. He survived, but his injuries resulted in a hole in his stomach wall. This provided an early window—literally—into how our emotions and mental health affect the gut. Through careful experiments, the surgeon William Beaumont discovered that St. Martin’s mental state had direct physiological consequences on his stomach’s activity: when he felt irritable, for example, his digestion slowed. Somehow, his emotional states were manifest in the specific, local biology of his gut.

Most people have experienced the gut consequences of their emotional feelings. Nerves before an exam might lead you to feel nauseous or even vomit. Profound sadness might make you lose your appetite, or perhaps cause a hunger impossible to satiate. Gut symptoms are common in mental health conditions, from appetite changes in depression to debilitating “psychosomatic” stomach pains. Many of our feelings are gut feelings.

But the gut doesn’t just respond to emotional feelings: it influences them, too. Take disgust. Disgust is visceral. Our stomach, like our heart, has a regular electrical rhythm; even just seeing something disgusting causes disruptions, called “dysrhythmias,” in this electrical signalling. Although disgust is crucial for survival—helping us avoid disease and stay alive—in many mental health conditions disgust becomes pathological. In obsessive compulsive disorder (OCD), for instance, dirt or germs can preoccupy someone’s thoughts, causing symptoms like compulsive hand-washing. Self-disgust is common in depression and eating disorders. And even post-traumatic disorder can be brought on by profoundly disgusting traumas.

Pathological disgust is particularly hard to treat : exposure therapy and other psychological approaches are much less effective than for fear-based mental health problems. A couple years ago, working as a neuroscientist at the University of Cambridge, I wondered if abnormal signals from the stomach could be causing disgust avoidance. I ran an experiment to test this hypothesis, and found that changing someone’s gut activity with a common anti-nausea drug reduced their disgust avoidance . This could represent a new way of treating pathological disgust in mental health disorders. For example, an anti-nausea drug could be administered just before exposure therapy, enabling patients to engage with therapy under a more optimal gut state.

Read More: How I Learned to Listen to What My Gut Was Telling Me

So gut feelings are not “all in your mind”—but they are not “all in your gut,” either. Sensations from the gut are transmitted to the brain via the vagus nerve, the primary channel of information sent from the body to the brain. A second route to target “gut feelings” is by electrically stimulating this nerve, which changes the electrical rhythm of the stomach . That said,  the idea is not new: vagus nerve stimulation for patients with major depression dates back to 2000 .

A new theory published in November 2023 proposes that vagus nerve stimulation amplifies signals from the internal body to the brain, which helps us adapt our behaviour to its current challenges and needs. That could explain why the effects of vagus nerve stimulation are so wide-reaching, altering learning, memory, and motivation. That means amplifying signals from the gut using vagus nerve stimulation might improve mental health in some cases, but in others could be ineffective or even detrimental. Ultimately, we need to consider the state and needs of someone’s internal body before amplifying the body’s influence on the brain.

But the importance of the vagus nerve extends to even more established treatments: evidence from mice suggests that the most common type of antidepressant drugs (SSRIs, or selective serotonin reuptake inhibitors) require the vagus nerve to work. This, too, could begin to provide clues why antidepressants do, or don’t, work for a given person, and even help us understand why they might cause side effects in some people.

If the vagus nerve’s role helps us adapt to our bodily needs, perhaps the most important internal need of all is energy. One function of the gut—together with other organs—is metabolism, converting food to energy the body can use. There are mysterious and wide-ranging connections between our metabolic system and mental health. For example, the prevalence of depression in people with diabetes is two or three times higher than in the general population. It’s not clear why: diabetes could increase depression risk, or vice versa. My lab is currently testing a third possibility: that common metabolic factors might increase your risk of both depression and diabetes because of interactions between the body and the brain. If we’re right, this could open up avenues toward metabolic interventions that improve both physical and mental health.

Our brain and wider nervous system adapts to its circumstances, including the body’s internal, metabolic needs, as well as our experience of the environment around us. Because of this, your gut-brain connection is not static, but rather changes and adapts over time. A fascinating study in 2021 discovered that brain cells can re-activate gut inflammation that an animal has previously experienced. The mere “memory” of gut inflammation, stored in cells in the brain, induced the physical state in the body. So sometimes a “gut feeling” actually originates from the brain. This role of the brain in “gut feelings” means our brain has the capacity to produce dysfunctional gut symptoms via brain changes alone. This ability of the brain could have upsides as well, perhaps explaining why psychological therapy—which causes brain changes —can also treat some gut conditions .

Gut feelings originate from many sources: directly through the gut, through channels of communication between gut and brain, or even through the brain itself. In neuroscience, as we unravel the dynamic communications between gut and brain, we can begin to understand how these processes helped our ancestors survive—and how we could better harness them to improve emotional and mental wellbeing. A gut feeling might have many possible causes, but each of these represent a potential solution for mental health.

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Mental Health

With Prop. 1 passage, Gavin Newsom again changes how Californians with mental illness get help

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Gov. Gavin Newsom made mental health a priority since he took office five years ago. The ballot initiative voters approved this week will provide billions of dollars to fund housing and treatment facilities for mentally ill Californians.

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After days of uncertainty, the results are finally in: Californians, by a slim majority, have voted to throw their support behind Gov. Gavin Newsom’s latest effort to overhaul how the state cares for people with serious mental illness.

The Associated Press on Wednesday declared that Proposition 1 passed by the narrowest of margins, 50.2% to 49.8%. 

The passage of the two-pronged ballot measure will give Newsom funds to fulfill promises he has made while rolling out a series of other mental health policies in recent years –  more housing, more treatment beds and a concerted focus on unhoused people with serious mental illnesses. 

But it leaves the governor’s critics — including disability rights advocates and individuals living with mental illness — worried about cuts to other mental health programs and fearful it will result in the state placing more people in involuntary treatment.

The governor championed Prop. 1, which he has said “will help California make good on promises made decades ago.”

The initiative includes a $6.4 billion bond to pay for treatment beds and permanent supportive housing. It also requires that counties spend more of the mental health funds they receive from a special tax on income over $1 million on services for people who are chronically homeless. 

While the ballot measure initially seemed a shoo-in, public support wavered in recent months. In part, that’s because the state’s ballooning deficit came into stark focus — with the Legislative Analyst’s Office projecting last month that it might be as big as $73 billion. Opponents of the ballot measure had also raised concerns that it could siphon money from community mental health organizations, possibly causing some to close.

Public concern about homelessness and a multi-million dollar advertising campaign eventually carried the measure to victory —but just barely.

“It’s still not a huge vote of confidence,” said Thad Kousser, a UC San Diego professor of political science. He says Newsom failed to convince voters of just how effective other billion-dollar investments in helping unhoused people have been.

“To me, given the strong message, the money behind the message, the lack of organized opposition, I would have guessed at the beginning of this campaign it was headed for a 60-40 win,” Kousser said.

Nevertheless, it did squeak by. And under the just-approved ballot measure, counties are now required to invest 30% of the money they receive from the state’s “millionaire’s tax” into housing programs, including rental subsidies and navigation services. Half of that will be used to target individuals who are chronically unhoused or living in encampments. Up to a quarter of the money could be used to build or purchase housing units. 

The second part of the measure, the bond, is divided into two parts. About $4.4 billion will go toward inpatient and residential treatment beds. The rest is earmarked for permanent supportive housing, half of which would be set aside for veterans.

Darrell Steinberg, the mayor of Sacramento who co-authored the 2004 law that created the millionaire’s tax, said that, back then, he could “only dream that there would someday be a governor that would make mental illness and fixing the broken system a cornerstone of his governorship.”

“Gavin Newsom has done that,” he said. 

Gavin Newsom’s mental health plans

Mental health has been one of Newsom’s priorities since before he took office. He campaigned for the governorship with big ideas about how California’s mental health system might be fixed and, specifically, about how funds from the “millionaire’s tax” for mental health could be better used.

In a 2018 post on Medium months before he was elected, Newsom decried the state’s lack of commitment to improving mental health care . 

“We fall short because we lack the bold leadership and strategic vision necessary to bring the most advanced forms of care to scale across the state,” he wrote. “We lack the political will necessary to elevate brain illness as a top-tier priority. We lack the unity and fervor needed to rally the medical and research communities around an unyielding search for ever-better diagnosis and treatment. We’re all living with the fallout.” 

The need for mental health treatment continued to skyrocket since he took office. The COVID-19 pandemic dramatically worsened the problem. The public experienced escalating trauma and anxiety, while mental health providers became increasingly burnt out. 

Meanwhile, the number of unhoused people in the state continued to explode– growing 40% since 2018, the year Newsom was elected, to a current estimate of 181,000. 

In response, Newsom has championed a stream of major mental health initiatives. These include:

• A $4.7 billion package of programs for children and youth mental health .
• The creation of new court systems to address the needs of people with serious mental illness. They’re called Community Assistance, Recovery, and Empowerment (CARE) Courts .
• A new law that makes it easier to force certain people with serious mental illnesses into involuntary treatment. It amended the definition of “grave disability” originally laid out in the landmark 1967 Lanterman-Petris-Short Act, which limited involuntary confinement in the interest of protecting the civil rights of people with mental illnesses. 
• In addition, his administration is also overseeing the implementation of a statewide effort that promises to expand and streamline access to mental health care for people insured by Medi-Cal, the public insurance program for low-income Californians. It’s called California Advancing and Innovating Medi-Cal (CalAIM).

Expecting better outcomes

Sen. Susan Talamantes Eggman, a Stockton Democrat who has carried legislation to enact Newsom’s mental health programs, said the stream of recent policy changes will eventually lead to changing outcomes – but not yet.

“Policywise, the landscape is shifting dramatically,” she said. “It will take a few years for practice to catch up.”

Learn more about legislators mentioned in this story

Susan Talamantes Eggman

State Senate, District 5 (Stockton)

Time in office

2020—present

Educator / City Councilmember

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Sen. Susan Talamantes Eggman has taken at least $1.3 million from the Party sector since she was elected to the legislature. That represents 21% of her total campaign contributions.

She emphasizes that Prop. 1 has a lot of transparency and accountability measures attached, to ensure that the measure leads to concrete change.

But Newsom’s critics worry that many of his big initiatives – including Prop. 1, CARE Court and the broadened definition of grave disability – reflect an effort to move the state toward more forced treatment.

“It’s all in preparation of hiding the homeless instead of helping them,” said Paul Simmons, executive director of Californians Against Prop. 1. “It will still be a bridge to nowhere, pushing people into a system that can’t even handle what we have now.”

Questions about Prop. 1

Alex Barnard, a New York University professor who has written extensively about California’s mental health system, called fears of returning to mass reinstitutionalization “a little bit overstated.” But, he said the state is indeed moving toward a more paternalistic and institutional approach toward treating the most seriously mentally ill. 

The passage of Prop. 1 will help the administration to fully implement both CARE Court and the recent law expanding the definition of grave disability. But it also raises some thorny issues, he said.

One of these: What type of treatment beds will the state purchase with the bond money and where? 

Another: How will county systems deal with the money they stand to lose for mental health services? 

A state facing a massive deficit is not coming to the rescue, he said.

And then, there’s the question of just how transformative this latest influx of money will prove to be for actual Californians.

“The status quo has been remarkably enduring even in the face of a lot of attempts at reform,” he said. “The system has had an incredible amount of inertia.”

CalMatters reporter Jeanne Kuang contributed to this story.

More on Mental health

Three months after leaving the state hospital, she was supposed to be free. Instead she was dead

An initiative promised 20,000 homes for mentally ill Californians. It delivered far less

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Jocelyn Wiener writes about health and mental health for CalMatters, exploring the intersection between government policies and people’s lives. She has worked as a reporter in her native California for... More by Jocelyn Wiener

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Volunteers uncover fate of thousands of Lost Alaskans sent to Oregon mental hospital a century ago

A 15-year volunteer effort is helping identify the fates of thousands of alaskans who were shipped to a controversial psychiatric hospital in oregon between 1904 and the 1960s.

ANCHORAGE — Lucy Pitka McCormick’s relatives cooked salmon, moose, beaver and muskrat over an earthen firepit on the banks of the Chena River, just outside Fairbanks, as they honored her life. They whipped whitefish, blueberries and lard into a traditional Alaska Native dessert, and dolloped servings onto a paper plate, setting it in the flames to feed her spirit.

The family prayed as McCormick's great-grandson built a small plywood coffin that was filled with gifts and necessities for the next world, such as her granddaughter's artwork and a hairbrush.

The weeklong Koyukon Athabascan burial ceremony in September was traditional in all ways but one: McCormick died in 1931. Her remains were only recently identified and returned to family.

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McCormick was one of about 5,500 Alaskans between 1904 and the 1960s who were committed to a hospital in Portland, Oregon, after being deemed by a jury “really and truly insane,” a criminal offense.

There were no facilities to treat those with mental illness or developmental disabilities in what was then the Alaska territory, so they were sent — often by dog sled, sleigh or stagecoach — to a waiting ship in Valdez. The 2,500-mile (4,000 km) journey ended at Morningside Hospital.

Many never left, and their families never learned their fate.

They are known as the Lost Alaskans.

For more than 15 years, volunteers in Fairbanks and in Portland have been working to identify the people who were committed to the hospital. Many were buried in Portland cemeteries, some in unmarked pauper graves. A few, like McCormick, have been returned to Alaska for proper burials.

“It was pretty powerful that we had Lucy back,” said her grandson, Wally Carlo. “You could feel the energy when she came back to Alaska, like she had to wait 90-some years for this.”

A new database went online in February to help families see if their long-lost auntie or great-grandfather were among those sent to Morningside. The website, which builds on an earlier blog, is a clearinghouse for research performed by the volunteers.

Finding information has been laborious. Most records at the private hospital were lost in a 1968 fire, and territorial officials didn’t document those who were committed.

The volunteers became history detectives in an investigation that has spanned more than 15 years. Among them: former Alaska health commissioner Karen Perdue; two retired state judges, Niesje Steinkruger and the late Meg Green; and two other Fairbanks residents, Ellen Ganley and Robin Renfroe, aided by Eric Cordingley, a cemetery volunteer in Portland.

They combed through dusty Department of Interior records at the National Archives, the Alaska and Oregon state archives, and old Alaska court records for any tidbit: the results of commitment trials, cemetery files, death certificates, old newspaper stories and U.S. marshals reimbursement records for the costs of escorting patients.

Ganley and Perdue started the search at the National Archives in College Park, Maryland, in 2008. Armed with laptops and a scanner, they gave themselves a week to find any reference to Perdue’s uncle, Gilford Kriska, who had disappeared from the village of Nulato, on the Yukon River in western Alaska, when he was a boy.

They found a wealth of information about others in Morningside's payment requests for housing Alaskans. Finally, they saw her uncle's name on a patient trust account, showing the federal government owed him a few cents.

That entry provided his patient number, which they used to uncover more about Kriska, including that it was village nuns who had him committed.

Kriska eventually returned to Fairbanks, where Perdue said she met him once in the 1970s.

“He was mildly what we would call developmentally disabled today,” she said. He could read and write but had few life skills.

Perdue said that while she was health commissioner, from 1994 to 2001, many people approached her with similar stories of long-missing relatives. That pain had been passed down in the families for decades — “intergenerational trauma," Perdue said.

There are several thousand names in the new database, with more names and details being added. Users might be able to find when and why a patient was committed, when they left or died, a burial location, and a death certificate.

The hospital was founded in the late 19th century by Dr. Henry Waldo Coe, initially in his home and later on a bucolic farm in Portland. It operated under several names before it was called Morningside.

In 1904 it received a government contract to care for mentally ill Alaskans, a contract that lasted until after Alaska gained statehood in 1959 and began to build its own mental health facilities.

A variety of Alaskans wound up there: miners, housewives, Alaska Natives, a co-founder of Juneau, a banker from Fairbanks. Causes included postpartum depression, cabin fever, epilepsy, addiction and syphilis. The youngest patient was 6 weeks old; the oldest was 96.

Parents sometimes would frighten their children into behaving by mentioning the hospital. “Inside, outside, Morningside," became a common phrase denoting people could stay in Alaska, move away or be committed.

It was likely letters written by the patients were never sent, and they never received mail meant for them, according to evidence found by retired judge Steinkruger.

Morningside’s treatment of its residents came under public scrutiny by the 1950s. Congressional hearings and public outrage eventually helped force its closure in 1968. A shuttered mall off Interstate 205 now sits on its former grounds.

From Portland, Cordingley documented burial sites at several cemeteries and obtained 1,200 Oregon death certificates.

“I’m just glad that I happened to be here when they needed someone to help,” said Cordingley, who has volunteered at his neighborhood cemetery for about 15 years, helping to clean headstones and decipher obscure burial records.

In 2012, he began creating his own databases to help families find lost loved ones. He built three virtual cemeteries at www.findagrave.com, including photos of death certificates, burial sites and in some cases the patients. One virtual site is dedicated to Alaska Natives who died at Morningside, a second to other patients and a third for Alaska children who died at another Oregon institution, Baby Louise Haven.

Cordingley found Lucy McCormick’s grave marker in Portland, informed the family — they were stunned — and later watched as she was disinterred.

McCormick’s aunt, Fairbanks furrier Helen Callahan, claimed she was “insane,” and McCormick was admitted to Morningside April 5, 1930, after a jury confirmed Callahan's diagnosis, records show.

In January 1931, doctors performed a hysterectomy. McCormick died within weeks from a post-surgery infection.

Wally Carlo said his father and uncles never talked about McCormick, and he never knew what happened to her. After Cordingley found her grave, the family decided to bring her home, Carlo said.

On a beautiful fall day, relatives launched four boats on the Yukon River to take her to her birthplace in the village of Rampart. They were escorted by eagles and swans, “like a salute to Grandma Lucy,” he said. She was laid to rest on a hill overlooking the village of 29 people and the river.

“Don’t ever give up hope and try to get them back to where they belong,” he said. “Their spirits don’t rest until they’re found and brought back home.”

Online: The new database: www.lostalaskans.com A prior blog: www.morningsidehospital.com Alaska Natives who died at Morningside: https://www.findagrave.com/virtual-cemetery/552288 Other patients who died at Morningside: https://www.findagrave.com/virtual-cemetery/152302