This Web site is a component of the SAMHSA Health Information Network

Enter Keywords Choose Website This Site Mental Health at HHS All Mental Health

Online Publications Order Publications National Library of Medicine National Academies Press Publications Homepage

printer friendly page e-mail this page bookmark this page shopping cart  current or new account

This Web site is a component of the SAMHSA Health Information Network.

Disclosure

The day may dawn when I feel like telling the whole world I have mental illness. But for now it's too risky. I don't want to get ostracized.

-Bill, Program Counselor

Why should I have to go into work and act as if I'm fine when I'm not fine? I mean I'll do the work that I have to do, but from what they see of me, they say 'Hi, how are you doing?' and I say 'Fine.' Meanwhile, I'm up seven times in the night because I can't sleep, because I'm so depressed. Or I'm seeing my therapist four times this week because I'm feeling suicidal, or I burned my arm last night...  It's like a black and white situation. I'm fine, I'm fine, then suddenly I'm in the hospital. That's what they see. They have no sense of the gray area, and that's where I am actually most of the time.

-Judy, Associate Editor

Under the ADA, it is discriminatory for employers to fail to make "reasonable accommodations to the known physical or mental limitations of an otherwise qualified individual with a disability who is an applicant or employee [emphasis added]."² This makes good common sense: employers cannot be expected to take action with respect to conditions of which they are unaware. Further, requiring employers to accommodate unknown needs would create an incentive to ferret out disabilities among applicants or employees.

For some individuals with disabilities, this provision is not especially problematic. Workers who arrive for a job interview aided by a sign language interpreter or using a wheelchair have revealed the presence of some disability (although the nature of the disability and its potential impact on their job performance remains unknown).

On the other hand, workers with non-apparent disabilities who feel they might want or need an accommodation face a dilemma. They may be hired and employed indefinitely without disclosing that they have disabilities. But their employers have no obligation to provide accommodations until their disabilities are known.

The dilemma is essentially a problem of uncertainty. The worker with a non-apparent disability must make a choice without knowing, in advance, how the employer will respond to disclosure, how far the information will spread in the workplace, or in what ways it might impact on his or her personal or professional quality of life over time. In fact, very little has been written about the short or long-term impact of disclosure on job security. Workers with non-apparent disabilities must make an assessment of the risks and benefits they face in selecting a course of action. The ADA is intended to reduce uncertainty by imposing penalties on those who discriminate, but it does not eliminate the risk of negative consequences.

Disclosure is problematic for workers with psychiatric disabilities because of the risk of discrimination. Based on their previous experiences and those of their peers, many workers with psychiatric disabilities fear that disclosure will eliminate their job opportunities. Although the ADA makes such discrimination illegal, even the law's most staunch supporters recognize that enactment of legislation is merely a first step toward reducing and eventually eliminating discrimination. The law imposes penalties for those found in violation, but no amount of enforcement can deter all discriminatory actions.

Disclosure can also lead to more subtle changes in the social or professional context of employment. Some workers reported being teased or otherwise harassed. The severe stigma of mental illness in American culture is well documented. In a recent poll of 1,257 American adults, Louis Harris & Associates found that only 19 percent reported being "very comfortable" when meeting someone known to have a mental illness. This compared to 33 percent reportedly feeling "very comfortable" with someone who has mental retardation, 47 percent with someone who is blind, and 59 percent with someone who uses a wheelchair.³ Workers with psychiatric disabilities are confronted by these negative attitudes on the job in myriad ways.

Additionally, some of the workers I interviewed discussed the personal significance of disclosing versus not disclosing their psychiatric disabilities. As explained later in this section, they felt the decision had implications for their own recovery or personal development.

Disclosure is a fundamental step toward the exercising of rights by workers with psychiatric disabilities. When an applicant's or employee's disability is not known to the employer, the potential of the ADA to promote equal employment opportunity is significantly curtailed and the obligation to accommodate is not in effect.

This section summarizes the comments of the interviewees regarding the dilemmas posed by disclosure, decision points with respect to disclosure, and the potential benefits or risks of disclosing. It concludes with advice from workers with psychiatric disabilities to their peers regarding disclosure.

Worker Decision Points Regarding Disclosure

Mental health consumers routinely consider the question of whether or not to disclose their psychiatric disability to a current or potential employer. But they face several other decisions as well. The workers interviewed for this study pondered many dimensions of the disclosure issue, including when to disclose, whom to tell, and how much and what type of information to provide. A number of options are available to those who choose to disclose, as illustrated in the list below:

• when to disclose,
  - during the hiring process,
  - after the job is secured, but before beginning work,
  - after a positive performance pattern has, been established,
  - when an accommodation is needed,
  - when a crisis occurs.
  
  
• Whom to tell,
  - the immediate supervisor,
  - a higher level manager,
  - co-workers,
  - friends in other areas of the company,
  - Personnel representatives,
  - Equal Employment Opportunity officers,
  - Employee Assistance personnel, etc.
  
  
• how much and what type of information to provide,
  - stating that one has emotional problems vs. mental illness vs. some other label,
  - a psychiatric diagnostic label (e.g., DSM-III-R diagnosis),
  - the duration of the condition,
  - the prognosis of the condition,
  - medications, other therapies, or supports used,
  - previous, current, or potential impact of the condition on one's job performance,
  - changes to the work environment that may be helpful (i.e., accommodations).

This list indicates the variety of decision points that workers with psychiatric disabilities face regarding disclosure, in addition to the fundamental question of whether or not to disclose.

Methods of Disclosure

Employers may learn that an applicant or employee has a psychiatric disability through a variety of means. A post-offer medical examination may reveal the use of psychotropic medications. A series of "gaps" in the work history on a job application form may generate pointed questioning by an interviewer. Employment support programs often coach applicants with disabilities on how to handle these situations. Regardless of the source of the information - whether through purposeful disclosure by the applicant/employee or through any other means - the employer is required by the ADA not to discriminate against qualified individuals.

As previously discussed, because this study was based on face-to-face interviews with both workers and their supervisors, it only examined the experiences of persons who had disclosed in some manner. The methods of disclosure described by the interviewees included the following:

Self-Disclosure

• Joe was a senior executive in a state public health agency. His supervisor and co-workers knew that he was hospitalized for several weeks, but he attributed it to high blood pressure. He waited until he felt very confident of his job security and performance record before telling his supervisor and the agency director (months later) about his psychiatric disability. It was never discussed again. Joe says, "You can disclose when you're strong, but you can't disclose when you're weak."
  
  

• Rosanna works as a secretary at a government agency. She "came out"to her coworkers by hanging posters about mental illness above her desk.  When there was turnover in staff, she identified the supervisor who seemed most compatible and arranged to be assigned to his staff. When I asked her supervisor how he knew that Rosanna had a psychiatric disability he said, "I knew because I'm in this office, and she makes no secret of it.

Applicant Known to Agency as Former Recipient of Mental Health Services

In an effort to improve the quality of their services, some mental health agencies are proactively hiring people with psychiatric disabilities. At first, some agencies objected to the hiring of individuals who currently or previously received services from the same facility where they would work, citing issues of confidentiality or "role conflict." But the practice is now increasingly common. Some agencies are staffed entirely by people with psychiatric disabilities and may require the personal experience of psychiatric treatment as an employment qualification.

• Ben is a former client of the agency where he is now employed as a peer counselor. His supervisor previously staffed a residential program where Ben lived. They knew each other for several years in this "professional-client" context before working together. Neither expressed any discomfort with this arrangement.

Disclosure by a Supported Employment Agency on Behalf of an Applicant

Half of the workers were assisted by a supported employment agency who made the initial contact with the employer. In three of these cases, a job coach accompanied the worker to the job early on, but was no longer in regular contact with the employer; in one case the job coach still visited weekly; in the last case, the job coach supported several workers at the same job site, was partially paid by the employer, and was present during all working hours.

In these instances, disclosure was handled by a job developer or job coach. Typically, supported employment agencies obtain written permission from the job seeker to disclose his or her disability. In discussions with the employer, the worker's disability may or may not be categorized as a "psychiatric disability" or related to a "mental illness."

• Vince's job coach first approached the manager of a pizza delivery outlet to inquire about job openings for drivers. Vince reports that the job coach said she was from a "county employment program " which was not specifically identified as a mental health program until much later. The supervisor had previously engaged other supported employment agencies and wasn't concerned with what type of disability Vince had, as long as he was a good worker. When asked to give advice to other mental health consumers about whether or not to disclose, Vince replied, "I don't know because I never did it. I never came up against that."
  
  
• Steve works as a stock clerk in a department store. His employment support agency, too, made the initial contact, stating that Steve had a psychiatric disability. After six months on the job, Steve's supervisor left. The new supervisor was given no specific information about Steve's disability. The job coach arrived the next day to introduce himself and discuss Steve's work, but the conversation apparently never focused on the type of disability. I asked Steve's supervisor about their discussion: "He just told me to help him out as much as I could, give him as many guidelines as I could But he kind of gave me the impression that he was like a normal person, but he didn't go into details." When asked how Steve's disability impacts his functioning on the job, the supervisor said, "I don't really know what type of problem he has." Steve has been on the job for two years and his supervisor says, "He's one of the best assets I have... He's very productive."
  
  
• A job developer arranged for Linda's interview with the senior day program at a city recreation center. The hiring supervisor knew that the agency primarily served people with developmental disabilities. The supervisor reported that the job coach "shared a little bit about Linda's mental health history, " but the discussion largely focused on her strengths and weaknesses. From Linda's perspective, she didn't disclose until later, when her supervisor was invited to meet with Linda and her service providers at the mental health center.

The ADA provides nondiscrimination protections not only to those who choose to disclose, but also to individuals who are discriminated against because an employer learns that they have a record of a physical or mental impairment. If employers obtain information about a worker's previous use of psychiatric treatment, for example, and exclude a qualified individual from consideration for employment, promotion, etc. on that basis, they are in violation of the ADA. This is true even if the worker no longer has an impairment. Similarly, individuals who are regarded as having a mental impairment, (e.g., on the basis of their behavior, appearance, etc.) are also covered by the ADA, whether or not the assumption is accurate.

Unfortunately, many mental health consumers have the impression that if they do not disclose during the hiring process, they forfeit the opportunity to request accommodations later. This belief is unfounded. The employer's obligation to make reasonable accommodation begins at the time of disclosure, but this may occur at any point before or during one's job tenure. Similarly, long-term employees who were not previously disabled may acquire disabilities at any time (e.g., due to an injury or illness).

Potential Benefits of Disclosure

In making decisions about disclosure, workers with psychiatric disabilities may weigh the potential costs and benefits of doing so. The following are some of the potential gains described by workers interviewed for this study:

Disclosure allows the worker to request reasonable accommodations.

The ADA requires covered employers to make reasonable accommodations to the "known" disabilities of applicants or employees unless doing so would impose an undue hardship on the operation of the business. The employer's obligation begins when the disability becomes known, which may occur at any time prior to or during employment.

Disclosure allows a worker to choose to have a job coach come to the work site and communicate directly with the employer.

Some supported employment programs will offer assistance away from the work site if the service recipient chooses not to disclose. But other programs feel that their effectiveness is limited if they never communicate directly with the employer. If the worker wants and allows on-site assistance from a job coach or employment training specialist, disclosure makes this possible.

Disclosure enables a worker to involve an employment service provider, employee assistance program, or other third party in the development of accommodations.

• One worker said that she thought disclosure was advisable because it enabled her to involve an informed "third party " in discussions about accommodations. When she raised the issue by herself, she felt as though she were requesting a favor from her employer. Involving a third party made the negotiations more "business-like" with the goal of properly implementing employer policy.

Disclosure may make it easier to come to work during a period of heightened symptoms.

• Rosanna finds this to be true."Now if I feel like if I'm depressed, I'll still come to work. Whereas before I wouldn't be able to do that...Before I didn't want people to see me like that because they'd think I'm weak But I know that people don't think I'm weak.  They know that I'm strong. A lot of them know that I've disclosed about my past, and they admire and respect me. So if I come and I cry all day in the bathroom, I don't feel weak. I'm proud of myself-I came to work anyway.

For some, non-disclosure may be inconsistent with the process of recovery.

Judy is an associate editor with a publishing company. She feels that hiding her psychiatric disability is detrimental to her own recovery process."I feel better having them know the truth of what's going on rather than feeling that I have to pretend, that I ought to be ashamed of this, that it's my fault somehow...I'm not comfortable with splitting myself in half like that, trying to be two separate people."

Judy also believes that her coworkers attitudes are, to some extent, shaped by how she discusses her own disability."I talk about it in the same tone of voice as I would talk about going away for the weekend. That may make it easier for them to sort of act as if it's no big deal. If I were really embarrassed and ashamed and stuff, it might be different.

Disclosure allows co-workers to offer personal support.

• Rosanna has developed close, supportive relationships with her colleagues. She describes how that affirmation affects her: "These people are my friends, and they care about me. They really care. They were worried about me, and it wasn't in a condescending, patronizing way. They cared, and that's giving me more confidence in being able to say what I need without fear of reprisal.

From an advocacy or altruistic perspective, one person's disclosure may empower another.

Rosanna found that her self-disclosure inspired another worker in her office to come forward and discuss his bipolar disorder. Rosanna was surprised because they didn't even work on the same floor. She was told, "Yes, but he feels much more confident because he sees you; you're out of the closet with your illness and ...You can share about it openly...He's come out of the closet...He feels more confident, he feels accepted...His work performance is going [sky­-high]."

Both employers and employees frequently comment that while disclosure may not be required during the hiring process, subsequent disclosure seems to evidence a violation of trust in the employment relationship. Some employers describe feeling betrayed by workers who fail to disclose their disabilities until an accommodation is needed or a crisis has occurred.

Disclosure can also come too late; some employees with disabilities have been known to wait until they face termination before disclosing and requesting a needed accommodation. At that point, the employer/employee relationship has deteriorated, and the worker may be at a legal disadvantage.

Potential Hazards of Disclosure

The risks of disclosing one's psychiatric disability in the workplace are vast. The workers I interviewed related the following issues:

Despite the ADA, employers may find ways to avoid hiring individuals known to have psychiatric disabilities.

• Judy commented on disclosure, "If I do it, I feel as if I'm making it highly likely that they'll say they don't want to hire me."
  
  
• Steve had similar remarks about disclosure: "You have to weigh the support you get minus the stigma. A lot of people tell me, don't ever say a word about having been in the hospital. They won't hire you in a minute. I believe it."

Co-workers may tease, harass, or otherwise discriminate against individuals known to have psychiatric disabilities.

• As part of his job, Steve retrieves incoming shipments of shoes from a loading dock and transports them to the shoe sales department, where he re-stocks the shelves. The other employees know that Steve has a disability because his job coach comes on site. He said, "I get a lot of people making remarks, you know, playing with you a little bit, you know. There's a couple of guys up in receiving, and I got to go up and get my shoes off the truck. They tease me...There was a lot more of it in the past than there is now. After a while, people got to accept that I was going to be there, whether they liked it or not... And I don't get upset anymore. I used to come home and curse about it, but I don't get upset about it anymore."
  
  

  Steve also finds that some co-workers try to force him to talk about his psychiatric disability."They ask me a lot about my living situation in order to try to get me to say that I live in a psychiatric disability program. But I tell them I live with my parents. I say that hundreds of times a year."

• Joe described how the reactions of others in the workplace can increase stress. When asked what his advice would be to other workers with psychiatric disabilities regarding disclosure, Joe commented, "I think that you really have to evaluate it in terms of the stress you take on for the disclosure." He described a cycle in which others start to treat one differently because he or she is known to have a mental illness."It gets very difficult to discern how much of it is happening because of stigma, if you will. How much is it really happening because you're performing badly and you don't deserve it? And how much of it then becomes realistic and then paranoid worries about how people are perceiving you? How do you sort that out as a person, on top of all the struggle of the illness, which is very real? You can't forget that either, that it's real that these thoughts go through your head, or it's real that the illness is disabling. It is...If you disclose, you take on all kinds of burdens."
  
  
• Linda related similar experiences: "Sometimes I get the impression around here they laugh at me and stuff like that and they make fun of me because they know I'm a little bit crazy. I'm not sure if they do know (about my disability). I always keep my mouth shut, but it's just their attitude sometimes. They laugh at you and they make fun of you."
  
  
• Rosanna described an incident from a previous employment situation."The V.P. of Personnel was my boss, and he was a jerk. He believed that you should be able to pull yourself up by your bootstraps and function. I remember calling him from the psychiatric ward and holding onto the nurse's hand while I was making the call because he was yelling at me on the phone." He accused Rosanna of using the hospitalization as a vacation.

Co-workers may wrongfully assume that individuals with psychiatric disabilities will be less productive members of the team.

• Linda's supervisor reported that other employees assumed she would be a poor performer before they even met her. They knew she was coming from a vocational training program In the supervisor's words: "They were afraid it was going to be more work for them. Do you think we could hire somebody else who could do this and this and this.' That was just some of the initial concerns they had before even meeting her...I think initially the staff was thinking, 'Uh oh, now we're going to have to work pretty hard.'And they really haven't. Linda has been a real asset."

Disclosure may limit one's opportunities for career advancement.

Separate from the short-term implications, disclosure may be detrimental to one's long-term career advancement. This may be particularly true of jobs in which a worker's output is intangible and not readily assessed through objectives measures. Two workers commented in this regard; remarks by one of them are summarized below.

Joe expressed the concern that white collar workers, in particular, take on substantial risks to their career development by disclosing. He feels that too often we emphasize the implications of disclosure for a particular job, while ignoring the long-term implications for one's career advancement."Too much of this stuff is about job protection instead of career protection. What about my career? Which is not just important to me, but I have [two kids]. What about them?... I think there are lots of times that the career path is moving along, and if you take a sidewards step, you're taking a major league risk "

Joe described a previous employment situation. He had been working toward a promotion for several years when he experienced a psychiatric hospitalization. The promotion was just about to be announced when he was absent for several weeks. He had not disclosed that he had a psychiatric disability. When he returned, he wagered that disclosure would ruin his chances for the promotion."I'm scrambling around trying not to look psychiatrically disabled... [What if] I come in saying, 'Wait a minute, I think I need a little support for my illness, I need this accommodation. 'My thinking at the time, and I don't think it was just paranoia, was that it would have gone to somebody else." He gave a different medical reason for the absence and secured the promotion.

Others may attribute all of one's behavior to his or her psychiatric disability and avoid giving feedback that would allow the worker to achieve improved performance.

Joe reflected on this type of reaction in others."You can become identified as the person with a disability, and that becomes your persona. It's very tough to get out of that...Things that are aberrant about you, that may have nothing to do with your illness, get put in that illness box. So, that can be self-limiting. If you're not doing what you're supposed to and people don't tell you because they think it's because you're crazy, you never get the feedback, so you keep doing it! And that's self-limiting."

Identifying oneself as "disabled" may conflict with one's beliefs or self-image.

In its definition of "disability"⁴ and its description of the "Process of Determining the Appropriate Reasonable Accommodation,"⁵ the ADA incorporates the medical/rehabilitation model of disability as functional limitations associated with a physical or mental impairment. This model is rejected by some individuals with disabilities. For example, some believe that mental illness is an artifact of social norms which are intolerant of any behavior outside a narrow range considered "normal." Others view it as a spiritual or emotional crisis or personal evolution. For some, mental illness is a natural response to the trauma of physical or sexual abuse. Within some cultures, there is no equivalent concept of "mental illness," and it may be detrimental for individuals to identify themselves as "ill." For these and other reasons, some individuals who might technically qualify for protection under the law would never consider describing themselves as "disabled" to an employer.

A January 1993 consumer teleconference hosted by the National Empowerment Center focused on reasonable accommodations. Ms. Lorelee Stewart of the Independent Living Center of the North Shore (Lynn, MA) facilitated the conference. Ms. Stewart commented on the diversity of opinions among mental health consumers/survivors about whether or not they have an identifiable "disability." She said that individuals may identify themselves as "psychiatrically disabled," "psychiatric survivors," "mentally ill," "psychiatrically labeled," "ex-patients," etc. For those who feel they have been falsely labeled, it may be unconscionable to approach an employer and request accommodations as an "individual with a disability." In order to seek protections under the ADA, however, one must, to some extent, accept that label. Ms. Stewart's comments elucidate the range of profound issues that workers face in exercising their rights under the ADA.⁶

Advice from Workers with Psychiatric Disabilities Regarding Disclosure

In addition to recording their personal experiences, I asked the interviewees to advise other workers with psychiatric disabilities regarding disclosure. Most of them were hesitant to make generalizations.

Judy feels it was beneficial for her to disclose."It's been helpful for them to know something of what was going on. I just don't see any point in pretending it's not happening. It's clear that there's something wrong...When it comes up and it's going to be a problem, then be honest about it. I wouldn't advise never talking about it. Never saying a word definitely isn't a very good idea. I guess it depends on who you are. Some other person might feel much differently."

Several interviewees recommended that workers wait until they have established a reputation as a good employee before disclosing. This approach allows time for colleagues to form impressions based on many of one's personal and professional traits prior to disclosure.

Linda's advice: "Maybe wait a little while and maybe try to show them that you're a good worker, that you're responsible and have all the good qualities it takes to be a good worker and then maybe, just maybe, if you could sit down and have a heart-to-heart talk with the employer, maybe they would understand, and they would cooperate with you and help you and stuff like that "

Rosanna chose to wait until her co-workers knew her before disclosing."I would never advise somebody to disclose at pre-employment. It's too early in society right now. Maybe times will change with ADA, but I don't know. I just would not. Because people are too discriminatory. They fear that "Oh, my God, this person is a danger to herself, she's going to commit suicide in the bathroom, or she's going to kill somebody." The stereotypes come out. When I told people, they already knew me and liked me, and I had already established a foundation of good work, good personality, able to get along. So when I told people, they would be shocked, but I already had a firm footing."

Others advised avoiding disclosure altogether.

Bill: "I think it's better not to tell them. Well, maybe if it's supported employment and the counselor goes with the prospective new employee...In un-supported employment, I would keep it tomyself if you think you can."

Ben: "I don't think it's a good idea. I don't think so. Unless you shake all of the time or have side effects. Then the employer would know for sure and might be wondering, 'Why does he shake, why does he show side effects of medication?' Not besides that.

Conclusion

Although the ADA is intended to reduce the prevalence of stigma over time, workers with psychiatric disabilities are now equipped with rights that may, in some cases, outpace the change in public attitudes. At first glance, the need for disclosure seems logical and straightforward. But once disclosure has occurred, there's no turning back. For these reasons, decisions about whether or not to disclose, when to disclose, to whom, and how much to say, may be the most delicate and complex area of ADA implementation for workers with psychiatric disabilities. It is also an area of very little investigation or research. The following research questions remain:

How is a worker's chance of being hired impacted by pre-employment disclosure of a psychiatric disability? (A study could compare rates of hire among workers with equal qualifications who disclose versus those who do not disclose.)

How is the job security of a worker with a psychiatric disability impacted by disclosure?

How is the employer-employee relationship changed by the information that the worker has a psychiatric disability? How is the relationship changed by the information that the supervisor has a psychiatric disability?

How are co-workers' attitudes affected by disclosure in the workplace?

What is the impact of disclosure using minimal or vague terms as compared to providing more comprehensive information?

What types of information do employers want or need to know about a worker's psychiatric disability? What types of information do employees want to disclose?

What types of information tends to be used to the employee's benefit? What information tends to be used to the employee's detriment?

When do employers want and need to know about a worker's psychiatric disability?

What are the factors to be considered by an applicant or employee in deciding when to disclose a non-apparent disability?

How is the employer-employee relationship affected by the disclosure that occurs long after hiring.

Under which circumstances is a worker most likely to benefit from disclosure? Under which circumstances is a worker most likely to suffer losses as a result of disclosure?

What are the subjective experiences of workers who've chosen to disclose and not to disclose?

Table of Contents | Previous | Next