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Mental health consumers as professionals: disclosure in the workplace.

Disclosure in the workplace is a topic that mental health consumers have struggled with for years--some of us in our personal experience; each of us in our professional roles as we support people with mental illness in becoming employed. Over and over again we have come face to face with the dilemma of the choice, the agonizing decision and the wonderful and/or devastating results. We have examined our experiences, we have spoken to more than 100 consumers about their experiences, fears, and beliefs about disclosure. Over and over again we have been struck by the power of stigma in influencing the decision and the power of disclosure in addressing stigma.

Any discussion about disclosure on the part of mental health professionals has to begin by addressing the often asked question of whether or not people with mental illness should work as mental health professionals, an issue which has generated a great deal of discussion over the past few years. Opinions on this topic have been quite varied, including "Absolutely not," "Yes, but not where the person is receiving or has received services," "Only if they don't have access to confidential files," and on and on. In truth, people with mental illness have been working as mental health professionals for a long time. They have simply chosen not to disclose.

Now, as the idea of people with mental illness as mental health professionals is gaining acceptance, another issue emerges: does the presence of a mental illness in and of itself make someone a good practitioner? Consider the following counselor's experience:

"As a mental health professional and a consumer of mental health services both past and present, I have known for years, dating back to several hospitalizations in the early seventies, that I possess some inherent skills that allowed me to reach my fellow patients. Many of the professional caregivers at that time, despite their advanced degrees and proficiency, could not obtain the same level of communication with their patients that I, an untrained and obviously very disturbed young man, was able to accomplish with ease. I was referred to as the 'Pied Piper!'

"Once upon the road to recovery, while taking jobs in the only field I was trained to do (security), I remembered the things that my professional caregivers had said to me; things such as, 'It is too bad you became ill, you would have made a heck of a social worker or therapist!' I remember wondering why I couldn't still set my goals in that direction. I hadn't realized that I was experiencing my first brush with stigma within the system. After literally infiltrating the system and becoming an entry level psychosocial worker in a small community mental health center, I moved to my current position where I meet and work with many fellow consumer/practitioners of varied degrees and specialties. Many of these colleagues have reported very similar experiences to my own in interacting with fellow consumers over the years. This ability to reach others had drawn them, also, to a field that stigmatizes as badly or worse than society as a whole."

Today, because of changing attitudes as reflected in the Americans with Disabilities Act and because other consumers across the country have disclosed their backgrounds, the field is slowly opening its doors to both those new professionals who disclose at the time of hire and those professionals who, in a clandestine way, had entered the field and may now choose to disclose. Some educational programs such as the psychosocial rehabilitation and treatment degree program of Middlesex County College and the University of Medicine and Dentistry of New Jersey have actively recruited consumers, with career goals of becoming professionals, with the intention of providing needed accommodations and supports.

The choice to work in the mental health field, like any other career choice, needs to be based on interests, preferences, and skills. When individuals make this choice for other reasons (i.e., seeking power or control; thinking they can get even with the system by working from within) and in the absence of adequate skills, the professional is less than effective, regardless of the presence or absence of a mental illness.

It is our belief that it is the presence of helping skills that makes an effective professional. An individual with these helping skills, who also has personal experience as a consumer, may bring added insight and resources to their professional role. Simply having experience as a consumer, however, does not guarantee that one will be an effective professional.

The decision to disclose the presence of a mental illness to one's employer, coworkers and/or clients is fraught with consequences. There are many benefits to disclosing and just as many problems. Disclosing enables you to ask for accommodations and supports which may be difficult to explain otherwise. It gives you the opportunity to connect with clients not just as a professional but also on the basis of shared experience and to be a resource to clients and colleagues for information learned only through experience, such as medication side effects which are not listed in the resource books or ways to cut through the red tape and get the services you need. You may become a role model for clients as well as a challenge to some long-held beliefs. Unfortunately, disclosure may also make you an easy target for negative feelings people may have about consumers. Through our own experiences and after talking to more than 100 consumers about the issues associated with disclosure, we are convinced that in most employment settings it is wise to explore the "who, why, when, how, and how much" of disclosure before deciding. We are also convinced that disclosure in the workplace should absolutely never be mandatory.

Before deciding to disclose in the workplace it may be necessary to make an assessment of the readiness of coworkers, administrators, consumers, and other staff to handle this disclosure in a positive way. You may want to decide who you would tell first. Confiding in a trusted colleague establishes an ally who may be helpful later in dealing with less positive responses. Knowing why you want to disclose and what reactions you are expecting may help you plan what to do if reactions are different from those expected. Deciding when, how, and how much to disclose depends in part on the culture of the workplace. You may want to examine the ways in which staff support each other: informally before program hours begin, formally in a staff support group, meeting after program hours for coffee or a drink. How much tolerance is there in this work setting for discussing any personal information? Although each person's experience with disclosure is unique, what seems to be true most of the time is that it is better to start small. Once something has been said it cannot be taken back.

Those whose job it is to support people in becoming and staying employed need to be willing to work with people to answer those questions and willing to accept the individual's decision, as represented in the following:

"John and I were returning from visiting one of our clients in the hospital when, for the first time in the year I had worked at the community mental health agency, I began to get down and personal with him about my own mental illness. For 8 hours every day, I worked with people who had many of the same symptoms and problems I had; who were taking medications I had taken; and had been treated by professionals and hospitals that I had also used. Afraid that my having this same mental illness would somehow 'disqualify' me from being able to work at the agency, I kept silent. I was afraid if they knew they would fire me. But the stress of keeping the secret had became unbearable. John's reaction was crucial but, I felt, predictable, based on the friendship we had developed. His support and encouragement enabled me to go on and disclose to my supervisor. But I also wanted to share the hope of recovery with the clients I worked with, and let them know there was a way back from what felt too often like a pit of darkness; I wanted to share the struggle of living with this illness, both the good and the bad, with others who had it, and with my colleagues. My supervisor and I discussed how and when to disclose to the rest of the agency. We explored what to disclose, the possible reactions, ways to respond to these, and where this disclosure should take place. We weren't sure what people's reactions would be but I knew I had her support. We agreed that the first step was to disclose to staff in the weekly staff support group. Soon after, I began disclosing openly to clients as well.

"The initial reactions were positive. I was respected for my work, so my professionalism wasn't called into question. At times, as my colleagues experienced their own struggle with what it meant to have someone with a mental illness actually work in their agency, alongside them and their clients, less positive reactions occured: hurtful statements, thoughtless jokes. At such times it was helpful to talk to my supervisor to gain perspective on the event and to sort through my feelings about it. For the most part I became a source of first-hand information for colleagues, a role model, and, at times, a frightening anomaly for clients, and I took on a new role: consumer advocate."

The availability of a supporter--counselor, supervisor, coworker, friend, family member, or anyone else the individual chooses--often makes the critical difference in the individual's ability to deal with all the reactions to disclosure that he/she is likely to get. This is particularly true when the reaction is not what was expected or is not positive. Although often the results of disclosure are constructive--such as coworkers and employers expressing interest in the experience of mental illness, recognizing a challenge to notions that consumers are incapable of working or working as professionals, and exhibiting a general decrease in negative feelings and beliefs concerning people with mental illness--this is not always the case. For some people, knowing that a colleague is a consumer does not affect their feelings about consumers; rather it affects their feelings about their colleague. To illustrate, consider the following experience:

"Disclosing to my coworkers at the agency left me open as a target for any of that leftover, hidden stigma against mental illness that may exist. And because I was not one of their 'clients' but a competent colleague, it appeared that I was strong enough to stand it. I was fair game. One of the most painful events that I ever experienced involved a simple gum eraser.

"One morning, before the day program activities began, I came in to work on my paperwork. I opened my desk drawer to get my pen, when I noticed my gum eraser out of place, with something written on it. I took the eraser out and laid it on my desk--no easy task as my hands began to shake. Written with pen on that eraser was the word 'crazy.'

"One of my colleagues, in this staff--only office, had gone into my desk, taken out my eraser and written 'crazy' on it. I was dumbfounded. I couldn't imagine anyone doing such a thing. The people in this office were my colleagues and friends. Disclosing hadn't seemed to change any of that. Until now. I brought the eraser to my supervisor, who understood its impact. She was shocked and supportive. We talked about the incident, the possible meanings, potential responses. I left to go home, too shaken to work. I cried my way home, questioning my judgement in ever disclosing. Painfully, I realized I couldn't unring that bell. I realized that no matter where I went, stigma and oppression, ignorance and fear, were going to be an ongoing struggle. Stigma was the shadow that would always be there. You can't turn on the light without creating shadows behind you. Fear and ignorance run so deep, and are so powerful. But I was going to have to find some way to put it in perspective, to continue to educate and advocate at every opportunity. I had fallen into this struggle with both feet running, whether I liked it or not. Unfortunately, and perhaps in the saddest way, I realized I'd have to be educating even my own colleagues. But the pain ran deep. Just like it does every time it happens, as it has over and over again through the years. I carry that eraser with me, to remind me that stigma can be as simple as five letters, written with pen, on an eraser, hidden in a desk drawer."

Experiences like this illustrate the importance of having a friend, colleague, or supporter who can understand the impact of such an event and help the individual process the pain and move beyond it: but this is not enough. The culture that exists in a workplace is made up of both the formal rules, policies, norms, and rituals and the informal, unwritten ones. Agencies that provide services to people with mental illness need to examine their mission and values and courageously assess whether or not the culture sets a tone of respect, support, and hope for everyone.

Potentially, the willingness of the mental health professional who is a consumer to disclose is beneficial to everyone in the worksite. The agency has the opportunity to "walk the walk," to demonstrate it's beliefs in the capabilities of people with mental illness. For agencies that provide vocational services to people with disabilities, this is particularly powerful. Staff within these agencies gain an invaluable resource: Someone who has experienced the system from the other side and may know what some medications feel like, what to expect at the Social Security office, ways to manage symptoms, etc. Staff also gain the opportunity to examine their own beliefs and attitudes and re-evaluate any which may have created barriers to consumers' goals. Nowhere is the benefit of disclosure more obvious than in the impact it can have on consumers receiving services at that agency, as shown in the following:

"Being open about my own illness seemed to make a great impact on some of our clients, particularly since I worked helping people find jobs. Time and time again, clients would come to me asking about my illness, telling me that it looked like I coped so well and that they didn't cope well and that maybe I could work, but they'd never be able to. I'd spend time talking with them about the support and treatment behind the scenes that made it possible for me to do the things I want to do. Without going into details, we talked about using medications and therapy and support systems of all kinds to get through the day; and that my symptoms were serious and severe some days, just like theirs were, and that I could still work, just like they could. And sometimes it was like watching a light go on again behind their eyes. At first, they stared at their shoes, muttering about that dream they used to have of being a school crossing guard. And then that pause, waiting to hear what I'd say. I'd ask them what kind of help they'd need to achieve that dream, and specifically, how could I help support them. They'd look up, wondering whether I was serious. I'd look back, and remind them that this agency had hired me to be their casemanager, something I'd never thought I'd be when I was sitting in the same chair they were sitting in, across from my psychiatrist. And in a world where their casemanager struggles with the same painful illness and symptoms as they did, who knew what the limits were to what could happen? We'd share a laugh over that. Sometimes I'd see a little spark come back into people's lives as I reminded them over and over that their dreams were no more ridiculous than mine. And with the right supports, I'd managed to make mine happen. So could they. It's one thing for a doctor to tell you what you can and can't do, based on their experiences of working with other patients. It's something else altogether for someone with the same kind of illness you have, a peer, to show you that dreams don't have to die, that you can still go after what you want and sometimes get it, just like other people. It was a time of helping people reclaim their dreams, helping them see, often with some humor, that if their casemanager struggled with this illness like they did, then why couldn't they be a school crossing guard? or a teacher? or drive a car? or have their own apartment, too? Me? I just sat there, shrugged my shoulders, and said 'Why not?'"

Sometimes the impact of disclosure is the assignment of a new label: hero. The individual who pursues their life goals and manages their mental illness is seen as unusual, as a kind of "super consumer." This is particularly true if the individual is articulate and outspoken about the needs of people with mental illness, for example:

"A long time ago, someone gave me a piece of advice I've never forgotten: 'Never believe the best or the worst people say about you.' When clients' symptoms flare, and they need a target for their rage, I've been able to protect myself from personalizing that anger by remembering that advice.

"Unfortunately, it's a bit harder with all the best that people say. Whenever I'm asked to do a speech or presentation, I make it a point to remind the audience that what I say and do is not special; that people with mental illness do what I do all the time--work hard to achieve their goals and be the best they can be--and that there are millions of people with this illness who cope as well, perhaps better than I. Invariably, there are those who come to me with tears in their eyes and outrageous praise on their lips. They tell me how wonderful, brave, and courageous I am. It's not that I don't believe I am. It's not a self-esteem issue. It's that being that kind of a 'hero' makes me uncomfortable. The higher people put me up on a pedestal, the further down I'm convinced I'll be falling one day. And the farther away they are from understanding the message. The message is about people with mental illness being people, just like we all are. People with wants and needs, hopes and dreams, fears and desires. People who can write and paint, work, and raise children. People who have skills and abilities, as well as serious struggles and obstacles to overcome. People who need help and people who can give help.

"As long as people see me as a hero, they're missing the point. I'm not special. I'm just like everyone else. So whether they hide erasers with 'crazy' written on it in my desk drawer or hoist me on their shoulders and call me a 'hero,' it's nothing more than the shadows of stigma, and sounds of the struggle that still needs to be fought."

When the reaction to disclosure is "You're so wonderful to have accomplished what you have," sometimes the hidden message is "because most consumers can't." This may be an excuse for continuing to deny people opportunities to pursue goals and dreams.

Disclosure is a risk, and taking that risk is an individual choice. There is no one right way, time, or reason to disclose. The risk, though, can be minimized by the availability of a supportive person, an understanding of the reason for disclosure, and a plan for dealing with unexpected reactions. Professionals and agencies can minimize the risk by creating a work culture in which all people are respected for their individuality, valued for their contribution, and supported to do the best job they can.
COPYRIGHT 1995 U.S. Rehabilitation Services Administration
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1995, Gale Group. All rights reserved. Gale Group is a Thomson Corporation Company.

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Author:Manos, Ed
Publication:American Rehabilitation
Date:Mar 22, 1995
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