If you live with schizophrenia, then disclosing that diagnosis is a decision you’re going to have to make multiple times throughout your life. But, do you have to? What are the pros and cons of disclosing at work, for example? What do you actually say, and to who, at your place of employment? Will it hurt your career?
Host Rachel Star Withers, a diagnosed schizophrenic, shares her personal story, thoughts, and tips, and interviews the retired executive director from Disability Rights Ohio and licensed attorney Michael Kirkman to help navigate the Americans with Disabilities Act.
Michael Kirkman, JD, spent over 40 years as an advocate for those whom society had cast aside, including poor and minority people and people with disabilities. As a lawyer who practiced at the highest levels, including the United States Supreme Court, and who was sought out for consultation with officials at the U.S. Departments of Justice and HHS, as well as state officials in Columbus, his work improved the lives of tens of thousands of people. Prior to his retirement, Kirkman was the executive director of Disability Rights Ohio (DRO), a not-for-profit corporation whose mission is to advocate for the human, civil, and legal rights of people with disabilities. DRO is the federally mandated system to protect and advocate for the rights of people with disabilities (P&A) in Ohio. He previously served as the director and legal director of the Ohio Legal Rights Service, Ohio’s state agency P&A until 2012. Kirkman also served as President of the National Disability Rights Network from 2017 to 2020.
Rachel Star Withers creates videos documenting her schizophrenia, ways to manage and let others like her know they are not alone and can still live an amazing life. She has written Lil Broken Star: Understanding Schizophrenia for Kids and a tool for schizophrenics, To See in the Dark: Hallucination and Delusion Journal. Fun Fact: She has wrestled alligators.
To learn more about Rachel, please visit her website, RachelStarLive.com.
Gabe Howard is an award-winning writer and speaker who lives with bipolar disorder. He is the author of the popular book, “Mental Illness is an Asshole and other Observations,” available from Amazon; signed copies are also available directly from the author.
Gabe makes his home in the suburbs of Columbus, Ohio. He lives with his supportive wife, Kendall, and a Miniature Schnauzer dog that he never wanted, but now can’t imagine life without. To learn more about Gabe, please visit his website, gabehoward.com.
Producer’s Note: Please be mindful that this transcript has been computer generated and therefore may contain inaccuracies and grammar errors. Thank you.
Announcer: You’re listening to Inside Schizophrenia. Hosted by Rachel Star Withers, an advocate who lives openly with Schizophrenia. We’re talking to experts about all aspects of life with this condition. Welcome to the show!
Rachel Star Withers: Welcome to Inside Schizophrenia, a Healthline media podcast, I’m your host, Rachel Star Withers here with my incredible co-host Gabe Howard. This episode of Inside Schizophrenia is sponsored by IntraCellular Therapies. In today’s episode, we’re talking about a very serious subject and a decision that you’re going to have to make and unfortunately make it multiple times throughout your life, disclosing that you have a schizophrenia diagnosis. Do you have to? What are the pros and cons and what do you actually say? We have an incredible guest today, Michael Kirkman, who is a lawyer who specializes in disability rights to help us understand what the ADA actually says about all this.
Gabe Howard: I sort of feel like we need to tell people right away that this unfortunately is not one of those episodes where we’re like, do X and you’ll get Y. It is unfortunately kind of a quagmire of information, and you ultimately have to make the best decision for your situation and your life. And I just want to say, Rachel, that I think it’s incredibly unfair that it’s so convoluted and complicated. Clearly disclosure is a very important advocacy point. It really intersects with discrimination and stigma and myths and, well, everything else that we have talked about on Inside Schizophrenia.
Rachel Star Withers: Now, Gabe, you and me, we’re kind of, I’m 36, you’re, you’re.
Gabe Howard: Older?
Rachel Star Withers: Yeah, this is a little older. Yeah. So
Gabe Howard: Older. Older than 36.
Rachel Star Withers: It’s just a little older. I’m not going to throw you under the bus there. It’s just a little. Now think about 30 years ago, let’s say before our time the idea of disclosing a mental disorder to a job that was unheard of. And I think for us, it is now something that happens. But imagine in 30 years from now. So it was really interesting. There’s a study that was done in 2019 and for medical students since just 2016, disclosing that they had a disability to the university had went up 69% in just those three years, and the largest gain was in psychological disabilities. So all those young adults that we’re talking about, they’re all going to be in the workforce soon, and they’re much more comfortable with talking about disabilities. They’re much more comfortable with saying, Hey, these are the accommodations I need for such and such. This isn’t something I’m going to hide. It is part of my life. Disclosure hopefully won’t be as taboo as it was for me and you and our parents, grandparents, etc.
Gabe Howard: Even just talking about before the ADA, our generation, Rachel, we have always had the Americans with Disabilities Act in our working lives, but it wasn’t around forever. There were a lot less protections, which means there was a lot more cons to disclosing. So I know that we want to segue into reasons to disclose. And there’s, there’s so many reasons to disclose. And of course, the very first one is that you have to disclose in order to obtain those protections under the Americans with Disabilities Act and request those accommodations. Your employer is not required to accommodate you if they don’t know that you need accommodations and why. That’s fair.
Rachel Star Withers: One of the biggest reasons I think so many people want to disclose is it kind of reduces stress sometimes, like when you have a diagnosis or disorder hanging over you, especially a mental one where, yeah, it affects everything you do. All of my thoughts are kind of filtered through schizophrenia. Sometimes I feel like I’m hiding. And if you’re able to disclose it, I think so many people are like, Oh, it’s just going to be a weight off my shoulders. And in many ways, it can be. In other ways, it might just be more weight on the shoulders. Stigma is another thing, you know, hopefully, if you’re able to speak out that you have a mental disorder, it can reduce stigma. You could serve as a role model in your different communities. You could help to educate others. One of the coolest things for me is when someone finds out I have a mental disorder and then them telling me that, like a younger family member does too. I always feel good because I feel like, Hey, maybe I’m helping this person, accept that family member a little bit.
Gabe Howard: And, Rachel, you also serve as an example that people with schizophrenia can work. You don’t know how often I hear, well, what’s my loved one going to do? They can’t get a job and I say, Oh, well, why can’t they get a job? And they’re like, Gabe, they live with schizophrenia? I’m like, Aha. All right, we’ve got this moment. And it’s one thing to say, Oh, no, absolutely people with schizophrenia can get a job, but those are just words, right? There just, but then I say, Let me introduce you to my friend Rachel. Let me tell you about so many other people with schizophrenia who are, they’re going to work. They’re supporting themselves. They have families, they’re doing all of these things. But unfortunately, because disclosing has cons, they have decided, you know what? We’re just going to kind of keep that in our pocket. We’re going to do our jobs. And while they do tell the Rachel’s and Gabe’s of the world, they’re not really quote living publicly, which doesn’t allow them to be a role model. I have a saying it is so much easier to do something after you’ve seen somebody else do it. So if I’m sitting at home and wondering, can I work? Can somebody like me with schizophrenia work? For example, Rachel Star Withers did it and it gives me confidence.
Rachel Star Withers: And to be completely open, the reason that I’ve been able to do so well is that when I first got diagnosed, I was able to find other people like me and I read books by different people who had schizophrenia. I’m like, Oh, wow, like, this one was a doctor. Like, She’s so smart. I have no excuse now for not going to college because I was terrified that I wouldn’t be able to handle college. But I’m like, Well, she has a Ph.D., so I guess I can. I can go and I’ll be fine. That was the start.
Gabe Howard: Rachel, let’s keep the focus on you for a moment because you obviously disclose that you have schizophrenia and you disclosed at your workplace that you have schizophrenia because it gets you the accommodations that you need to do well, not just under the Americans with Disabilities Act, but also you’ve described supervisors understanding there’s just certain limitations that you have or there’s certain, I’m going to go with the word quirks, that you may have that are because of schizophrenia. You’ve got a great situation with your employer because you are able to disclose and have those conversations.
Rachel Star Withers: It definitely depends on the job, and we’re going to get into a little bit here like different ways of disclosing because I’ve definitely done all of them. Yeah, I will go back to it depends a lot on who you’re working for, your relationship there, how long there you’ve been there and then what type of work you’re doing. I’ve been very lucky that the type of work that I do, so I don’t think people were ever really nervous about someone with schizophrenia doing the things that I was doing. You know, that stigma never really came up. If anything, I was made fun of and not like to the point where I was crying, but just by like rude bosses saying, like I was acting like I was on drugs.
Gabe Howard: It’s interesting that you bring up that it can mirror drug and alcohol use. I want to be very clear we’re not picking on the addiction community, but I can understand from an employer’s perspective if they believe that you have come to work intoxicated, their reaction is going to be much different than if they feel that you’re symptomatic from an illness. Did that factor into your decision to disclose? To make sure that if you were symptomatic, they didn’t just say, Well, we’re going to fire her and send her home?
Rachel Star Withers: Absolutely. I am someone who prides themself on professionalism, so I did not want anyone thinking that I’ve been outside doing drugs in the parking lot on the lunch break and come back kind of acting a little odd than before. No, I felt that I needed to let my managers know and I still do whenever I start a job that, hey, this is something that might come up. I might not realize I’m acting a little odd. Now, something I do want to say, Gabe, because every time I’ve had to have that conversation, it always, you know, it takes a second. I have to kind of pull someone aside, like, is this the right moment? Ok, I’m sorry, sir, ma’am, boss person, can I speak with you real quick? However, two years ago I had the flesh eating bacteria in my face. And when I went back to work from it, you know, my face is all gobbled. And then I had at the time tubes coming out of my arm where they had to hook the IVs up to me. I had no choice but to disclose because everyone was staring at it and my face. I’ll be honest, it was so easy to disclose that I had had a rare flesh eating bacteria. I didn’t feel like I had to, like, pull anyone aside and be like, Hey, listen, I need I just so, you know, like, it was like, So I just got out of the hospital guys. I at no point ever felt like, Oh no, I’m going to be discriminated against. I was like, I look like a zombie. So let’s deal with that right now. I don’t want to say that it’s better to have a physical disability than a mental, but it was much easier for me to disclose that because it was an obvious thing.
Gabe Howard: I think it’s a very relevant point to make that disclosing some illnesses are easier than disclosing in other illnesses. And once again, this is convoluted. All illnesses should be equal. Disclosing anything to your workplace should arguably be the same, but unfortunately, it’s not, and part of making the right decision is being aware of that. A big thing that I think we should inform people is that if you disclose to HR, human resources, your supervisor, if you’re at a smaller company, management, et cetera, they must keep that confidential. I don’t want anybody to think when we’re talking about disclosure that we mean call the entire company or workplace all of your coworkers into a room and say, Hello, my name is Rachel and I live with schizophrenia. No, we mean disclose to human resources, to management. You can decide later if you want to tell any coworkers. So we just want to be very clear that when we’re talking about disclosure to the workplace, there’s two things to consider. Do you want to disclose to management, supervisors, HR? And do you want to disclose to coworkers? And you can disclose to one without the other, although coworkers are not bound by confidentiality in the same way that management is.
Rachel Star Withers: Now, of course, there are reasons not to disclose. For one, you might not need to. Like, there might not be a reason. For instance, you don’t need any accommodations. Your work isn’t being affected. So why do I even need to tell people? I’ve worked jobs where if they were listening to this, they’d be like, what? Rachel has schizophrenia? Especially jobs that I worked by myself. When I used to do this catering company, they never knew I had schizophrenia because I worked by myself. It was great. I would just drive the stuff and bring it back. I don’t think I ever told anyone there because I had no reason to ever tell anybody. I mean, I might have talked to myself in the van. Maybe the van knew, but now that would have been it. I was just dropping off food. You also might not want to disclose because of the stigma. That’s one thing I’ve definitely seen over the years is people who are like, you would think, Hey, this person is cool, they’re going to accept me. And then once they find out they do start acting different and you’re like, Wow, I just I just didn’t see that happening. I thought you were like, this cool laid back person, and now you’re treating me different. So there is stigma that still exists in our world, and unfortunately, yes, in the workplace. And then privacy, you know, sometimes it’s just nobody’s business. You just don’t need to tell everybody certain things. There are like coworkers that I wish didn’t know. There’s just certain people that rub me the wrong way, and I didn’t like them knowing that fact about me. But I put it out there, so it is what it is. Even though we had the ADA, you know, even though they’re not supposed to tell people, yeah, word can get out. Even if you only told your manager. That absolutely has happened to me multiple times. I can definitely tell you, I only told one person and then it was kind of being whispered around the office.
Gabe Howard: And this can, of course, impact your hiring and promotion chances.
Rachel Star Withers: Yes.
Gabe Howard: And again, it’s not supposed to, and it’s not allowed, but there’s lots of things that are illegal in our society that happen very regularly. And real talk now, just because they’re not allowed to do it doesn’t mean that it won’t happen. And not for nothing, Rachel, it’s nice not to have to wonder. If you don’t disclose, meaning they don’t know, and you don’t get a promotion? Hey, you did not get the promotion, but if you disclose and then you don’t get the promotion? OK? Did you not get the promotion? Was it discrimination? How did it factor in? I very much understand this whole privacy aspect because it’s just one less thing to worry about.
Rachel Star Withers: Now, let’s say I want to disclose, how should I do it? First off, one of the major things is that they always say to steer clear of a specific diagnosis. So instead of me going in, Hey everybody, I have schizophrenia, maybe saying I have a mental disorder, a psychiatric disorder, although I personally don’t like to say psychiatric because I feel that that’s a red flag in most people’s minds. It kind of falls under the same heading of schizophrenia. It’s just a scary word. I always say mental. That’s me. I know over and over the ADA actually says psychiatric. You don’t want to lie, but they don’t need to know every in and out of your medical history. It’s pretty much you tell them, here’s a disorder that I am dealing with. Here are some accommodations that would help. Now you discuss that then with your employer. But when do we actually tell them? Should I do it like in the job interview? Should I do it even before that, when I send the cover letter? Should I do it during the interview when I’m hired? When do we actually tell them? There is a pro if I do it in the cover letter before I even get an interview, just like putting it down on the application. Hey, by the way, guess what? Because it shows honesty and it gives them an opportunity right away to kind of know the situation. The con is that right away you’ve said, Hey, I have a major issue that could cause a problem for you guys as people who want to make money so they might not even want to do the interview then. And you’re never going to know what the reason was you didn’t get an interview.
Gabe Howard: There’s no wrong answer here. The con, of course, as Rachel said, and what is very meaningful to me is they will react to the disability rather than reacting to you with the disability. So, for example, if you’ve never known anybody who lives with schizophrenia before and all you are seeing on a sheet of paper is I live with schizophrenia, you’re going to picture probably pop culture representations. Whereas if you meet Rachel in person and Rachel discloses during the interviewing process, you’re going to think to yourself, Well, now wait a minute, I. She was articulate. She was well-spoken. She can really do the job. She fit in nicely. She’s well dressed. She showed up on time. There’s lots of other markers that go along with it. I think it’s important to understand that. But again, it also very much depends on the job because, for example, if you’re applying for a certified peer specialist job where you will be a peer supporter for people living with schizophrenia, you should smack that on the cover letter, your resume and everywhere else you can immediately.
Rachel Star Withers: During the interview, so let’s say I didn’t put it on the cover letter, but I got the interview, I secured it. Now I don’t want to lead off with, Hey, I’m Rachel, and. But a lot of people like to bring it up in the interview process, especially like you’re saying, if it could help, if it’s the situation, like counseling or whatnot. Yes, that could absolutely maybe help you get the job. But same thing, if I’m bringing this up during an interview, I don’t know how that person is going to respond. I don’t know what stigma they might have. They might seem very professional, but maybe they don’t realize they’ve ever worked with people with mental disorders before, and it might frighten them. So again, you know, I always say, like, kind of read the room, feel people out and again what the job is for. Ok, if it’s to work at the local ice cream shop where I’m not thinking there’s going to be any issues, maybe I don’t need to tell anybody.
Gabe Howard: It’s very important to think about this from a very individual level, decide what job you’re going for, why you’re going for it, what accommodations you might need, where you’re working and decide where you feel that it’s most beneficial. An example that I have heard time and time again is people have told me, Well, you know, Gabe, I’ve been out of the workplace for 15 years. It’s taken me a long time to get my, you know, my mental illness under control. I’m going to need a lot of retraining and people want to know immediately why I haven’t worked for 15 years. This is an important reason to consider disclosing because it explains the 15 years. The second thing is they’re worried that, look, I can’t handle a problem in my first attempt at work in 15 years, so I want to make sure that the employer I get understands this. So while it might cost me some opportunities, it will lead me to a supportive environment who understands mental illness, and I won’t get potentially caught up in as many issues. And that’s worth it to find because I’m just now getting back on my feet and I’m not certain that I can withstand controversy or issues or discrimination or problems. If you’re somebody that’s just switching jobs, you’ve had a job for the last 25 years, there’s no gaps in your resume, the reasons to disclose go down dramatically. Bottom line very, very individual on when to disclose pre job. It gets a little different once you’re hired. And Rachel, you want to talk about the pros and cons of disclosing after being hired.
Rachel Star Withers: Yes, so these next two, I have actually done. So once hired, and now I’m ready to come in for like my first day of work, my first shift. The good thing about bringing it up then, is you don’t have to worry if you were discriminated against or not, you’re able to set up right then and there if you need any accommodations. Back when I worked at this gym a few years ago, that’s what I did. The first day I worked, I asked, Hey, can I speak to the manager? Too small to have HR. And I told her all this. I said, Look, I didn’t need any accommodations, but I did want them to know because like I said, my speech and things get off. I act weird and they were like, OK. Then two years later, they changed the job and I couldn’t do some of the responsibilities now that they said I had to do. Luckily, they already knew about the mental disorder, and I said, Well, actually, when I first started here, I had told you guys this, and now you’re telling me I have to do these things and I’m like, I can’t. I’m going to need help. Wasn’t a problem. They were like, Oh wow, we had no idea, Rachel, I’m so sorry. Fixed. That for me has worked very well because then when I did need an accommodation, there were no questions asked. It was like, Oh, well, yeah, this is documented. You’ve already brought it up to us.
Gabe Howard: Now, let’s talk about disclosing after performance difficulties have arisen.
Rachel Star Withers: That’s usually where things can get a little bit hairy is if you wait until there’s an issue, if you wait until you have to be gone for six weeks because you also have other coworkers that who might be getting jealous, like, Oh, OK, well, now she has a mental disorder. She didn’t last year or something. There are definitely a lot of downsides. If you need accommodations, you need to speak up, though.
Gabe Howard: Now, let’s talk about types of disclosures, because once again, disclosure is sort of a catchall word, right? How much do you disclose? Do you say my name is Gabe and I live with bipolar disorder? My name is Rachel and I live with schizophrenia? Or do you say get a note from your doctor that says, I can’t do this task because of an undisclosed medical condition? And depending on what the task is, that may suffice. I have a diagnosed medical condition that affects concentration and therefore I cannot do X. I can do all the other stuff on the list. But this one thing I can’t do. Now, you haven’t said a word about schizophrenia. So, there’s several different types of disclosure.
Rachel Star Withers: Full disclosure, that means I’m telling everybody, that I have schizophrenia, I have a mental disorder. I’m just letting everybody know. I’ve never done full disclosure. I think that maybe through the grapevine it turned into full disclosure. Everyone found out, but I did when I had the flesh eating bacteria because I couldn’t hide it and I knew people were whispering. So I was like, Hey, listen, let me go ahead and just put this out there. This is what’s happening. Then people would ask questions. I’m like, All right, we’re good to go. So now let’s start work. But I’ve definitely never announced to everybody that I had schizophrenia. So, the next one is targeted disclosure, and that’s telling specific people. So telling just the boss, telling just your supervisor, maybe the people that you work with if you have a partner at your job, that kind of thing, it could just be going to HR. And then, of course, inadvertent disclosure. People finding out and you didn’t tell anybody. We live in the digital age. That’s going to happen a lot if it’s online. They’ve already stalked me on Facebook because they saw my name. They’ve already found my Instagram. So there is ways like that that disclosure can get out. Keep that in mind.
Gabe Howard: I don’t know if it’s the most common type, but a lot of people, when they hear inadvertent disclosure, they think crisis at work. Obviously if something happens at work, if you become symptomatic at work, the cat’s out of the bag because you got sick. So if you have decided not to disclose at work, it is important to maybe come up with a plan in your head of what will happen if an inadvertent disclosure gets out. Advise yourself of your rights, figure out what you can do and what you’re going to say, and then just hope that you never need it. Just give a little thought in the case of an inadvertent disclosure for any reason.
Rachel Star Withers: Gabe, you’ve had a very different experience than I have when it comes to disclosing your diagnosis at work.
Gabe Howard: Yeah, you know, I was I was young and dumb, Rachel, I want to be very, very clear that I’ve had several positive experiences. Unfortunately, the first one was overwhelmingly negative, ultimately leading to my termination. When I was first diagnosed, I was committed to a psychiatric hospital. I was off work for six weeks and when I came back and everybody was like, Hey, where are you? I had no reason to lie. I was sick. I was in the hospital. I was under a doctor’s care. I was given a medical diagnosis. I was young. I was 25 years old, but I had worked for this place for a few years. Rachel, do you know how many cards I signed? Do you know how many $5 I chipped in for baby gifts, for surgery gifts, for people whose loved ones had passed away? I mean, just I felt like we were a close knit group and that this was socially acceptable. Not I actually felt like it would be wrong of me to hide this information from my friends. I considered these people friends. Now, I disclosed immediately. I said, Oh, I, I was suicidal and I was, I was admitted to a psychiatric hospital. I told them my diagnosis and I just told everybody this and I went on and the it was pretty swift. We had a lot of problems very, very quickly.
Gabe Howard: People didn’t want to work with me. They didn’t trust me. They told me that I was lying so that I could get a six week paid vacation. People started mocking me, you know, telling me that I was weak for wanting to die. It came at all directions and there was a lot of upheaval and uproar, and the organization decided, Well, we can’t fire 30 people because they’re all afraid of, mad at, angry at, gossiping or talking about one person. But we can get rid of one person, which will calm the other 30 down. It’s not right. It’s unethical, it’s immoral, and it’s illegal. But ultimately, they did terminate me. I tried to talk to an attorney. This was 20 years ago, and an attorney said, Look, we’re not going to take your case. You’re a young male who looks healthy. There’s no definitive test for mental illness. While we’ve made great strides over the last 20 years, it was worse 20 years ago and I realized that I just had no protection because I really couldn’t prove it.
Gabe Howard: It ultimately ended with there was nothing that I could do, Rachel. And here I am unemployed. And this is very problematic because I needed health insurance. Remember that illness that I was just diagnosed with and the medical care that I needed? It, was it extraordinarily, extraordinarily problematic. It left me in an extraordinarily vulnerable position. I was very fortunate to have resources, family, money and things like that to limp me along until I could get back on my feet. But I often wonder what would have happened to me if I wouldn’t have been able to afford care, if I didn’t have people who could support me losing my job after being, you know, given a very serious diagnosis. When I did get back on my feet and I went back to work, I told nobody. I kept my mouth hard shut. Yeah, hi. Hi. My name is Gabe. I’m applying for a job. Tell me about you, Gabe. Nope. I mean, I was sharing nothing and people were like, What’s your favorite movie? Nuh-uh, I can’t risk it. Obviously, I’ve decided to come out and be public, et cetera. But, still, to this day, Rachel, I’m extraordinarily worried about what other things people will take from me just because I was sick. Am sick.
Rachel Star Withers: What really stands out in your story to me, is that you had just gotten out of the hospital dealing with your first major episode, and you’re having to then deal with all of that like, I’m surprised, honestly, that horrible situation didn’t send you right back in. It’s scary when you get out and you know you’re having to like, kind of restart your life and then to have that be the reaction. Like, I honestly, Gabe, like, I think it’s amazing that you made it through all that without getting so much worse, because I think for a lot of people that that would have been the nail in the coffin. That could destroy anyone mentally. Just a normal person, not even talking about someone who’s had an episode like that would just destroy so many people. So that is amazing that you came through that. And I, you know, I wish on the show. We could be like, Well, those people are horrible and don’t exist. But most of us, unfortunately in our lives, you’re going to meet some of them and you unfortunately met a whole group at one time.
Gabe Howard: What’s very sad is that, again, putting on my mental health advocacy cap, some of me understands their reaction and mob mentality. You know, what they heard was that Gabe tried to kill himself. Gabe was diagnosed with a, you know, psychosis and mental illness. He thought that demons was chasing him. I mean, just they heard a lot of very scary stuff with absolutely no information. In 2021, the information is lacking. And this was 20, this was 18 years ago. This was 18 years ago, back in 2003. And people are hearing this and they see, you know, I’m six foot three, I’m a big guy, and they hear that guy has a severe and persistent mental illness. And all we know about mental illness is that everybody’s violent. And he says that he hears demons. He’s going to come in and blow the place up. The reality is, is it was probably only four or five people that were really loud and driving this.
Gabe Howard: And then the other 24, 25 people just kept their mouth shut, which, of course, is that whole silence implies consent. So what you have is 25 people saying nothing. Five extremely vocal people. Nobody taking my side. We see this play out time and time again in so many things in our society. But you are right, Rachel. It was it was devastating. Again, I got through it. All’s well that ends well. I’m so, so fortunate to have good people. I do think it’s fair to be clear if I wouldn’t have had good people in my life, if I wouldn’t have had, you know, my parents and friends and if those people were non-existent, which is not uncommon for people with serious mental illness to have driven people away. If I would not have had those people in my life, that could have been, as you said, the final nail in my coffin. Those people saved me, and it’s sad that they had to because I was under medical care. I did work. I did have health insurance. I did everything that Americans say that Americans need to do to keep themselves safe if they get sick. And I was anything but.
Rachel Star Withers: Of course, in theory, none of that should have happened. It does, and it does every day and it probably on some level always will. But we do have the ADA or the Americans with Disabilities Act. The ADA defines a disability as a physical or mental impairment that substantially limits one or more major life activities. Now, if you heard me say that and you just thought, Well, wait. Schizophrenia isn’t really a mental impairment. Well, in two thousand and eight, they adjusted that to include people with psychiatric disabilities. That is where it covers the schizophrenia, bipolar, schizoaffective and all that. The ADA prohibits discrimination against an individual who has a record of history or being treated for a psychiatric disability. That also means employers can’t take actions such as failing to hire, demoting or denying training opportunities to someone just because they have a record of a psychiatric disability.
Gabe Howard: It’s important to understand that there are protections out there, and you need to avail yourself of those protections. Be aware of those protections and understand that you may need legal counsel in the event and learn about this as much as possible. And by learn about this. I mean, beyond this podcast, call a disability rights organization, call an attorney, call a local nonprofit specializing in workplace. Don’t just listen to this show and say, Oh, it’s completely safe because we have these protections or Oh no, there was this guy on the show that had a bad outcome, so it’s definitely not safe. These are not the messages. The messages are that it’s convoluted. It’s very personal. It’s a quagmire. But here’s the information that you need to move forward.
Rachel Star Withers: And we’ll be right back after a word from our sponsors.
Rachel Star Withers: And we’re back, talking about the pros and cons of disclosing that you have schizophrenia. Now, to be clear, disclosure isn’t a free for all. So just because I go in to my manager and say, Look, I have a psychiatric disability, using their words doesn’t mean I can then just ask for whatever I want. It allows you to get a reasonable accommodation. However, it can be put to the test what is considered reasonable, you and your manager or whoever will have to decide that together. And if the disability poses a real safety issue so they can pull you off certain things, if there is a safety issue, an employer can ask for medical documentation. They do not have to take your word for it. And for me, I have I have a letter I got from a doctor that pretty much wrote out my disorder and some kind of very simple accommodations. Whenever I talk to a manager or something, I knew job. I always have that letter that they can go ahead and put on file just a copy of it. Hey, this is just so for your records to know. I’m not just making stuff up off the top of my head, that could be an option for a lot of people out there. Just consider talking to your psychiatrists, whoever you see normally that can write you that letter. When you’re going out there, know what accommodations you’re going to need, be very upfront. You know, like I said, that letter is amazing for me because it’s not very scary. It basically says, I don’t need to handle money because I get confused counting and I’ve yet to apply at the bank. So I really haven’t come up to any rough things with that one.
Gabe Howard: You do raise a good point there, Rachel, you haven’t applied at a bank because you know that that job is not good for you. You can’t handle that. So you have taken the initiative to find jobs that are most likely to fit into your wheelhouse and be able to provide those accommodations. I point that out because it’s very empowering, right? If Rachel keeps trying to make her letter work at a bank saying, I want to work at a bank, but I can’t count money, she’s going to keep running into roadblocks and have issues, and that’s probably going to be devastating, right, Rachel? It’s going to be devastating for you. But by figuring out, OK, here are the things that I can do. And then here are the things that I can do well and focusing your attention and getting reasonable accommodations there. You definitely create not only a win for the employer who is choosing whether or not to hire you, but you’re making a win for you, Rachel, because you get a job that you excel at and that you like, and that the employer is able to provide those accommodations so an ounce of prevention is worth a pound of cure. Think hard about whether or not this is a good position for you before you apply. Think hard about what those accommodations will look like, and if it’s reasonable before you apply, you get a lot more yeses if you put in that work ahead of time.
Rachel Star Withers: Well, to help us get through all this legalese, we had to find an expert.
Rachel Star Withers: We’re excited to be speaking with Michael Kirkman today, who is the retired executive director of Disability Rights Ohio and a lawyer specializing in disability rights. Thank you so much for being with us today, Michael.
Michael Kirkman: It’s my pleasure, I’m glad to talk with you.
Rachel Star Withers: I want to jump right in because a lot of us who have schizophrenia or other serious mental disorders, we know the basics of the law. You know, you can’t discriminate due to disability, but it’s still, you know, does happen. So we want to know legally what are our options. So if an employer, let’s say they won’t make a reasonable accommodation, what do we do? Like, what’s my first step?
Michael Kirkman: Well, I wish I could say it’s simple, and in some ways it’s simple, but it actually becomes more complicated. The farther you go into the process. Also, I’m in Ohio. Some things vary from state to state, and I’ll come back to that. If you’re an employee, you have very specific rights not to be discriminated against based on your disability. Those are found in Title one of the Americans with Disabilities Act under Section 504 of the Rehabilitation Act. If your employer is a recipient of federal funding and then not at every state, but in lots of states, there are additional protections. California and New York have very aggressive anti-discrimination laws. Ohio has an anti-discrimination law. You can file a charge with the Ohio Civil Rights Commission under state law, or you can file a suit under state law. So if you feel like you’re being discriminated against, then you need to take the next step. And as part of any advice I would ever give, anyone is to contact a lawyer who is experienced in bringing discrimination suits on behalf of plaintiffs, particularly people with disabilities. And you can find those people. You can go to the National Disability Rights Network web page and find where the P&A in your state is located and how to contact them.
Rachel Star Withers: If I’m having issues with my schizophrenia and I haven’t disclosed that to my work yet, how do I go about doing that? Do I have to actually tell them I have schizophrenia? Or could I just say I have a mental disorder?
Michael Kirkman: But it depends on the employer, and you’re going to have to disclose something, and this is where it gets kind of tricky in terms of the nuts and bolts of it. You’re going to have to say to your employer that I have a disability and I’d like to be accommodated for it, and the employer has a right at that point to ask you for more information regarding their disability and what functional limitations that creates for you related to your work. These are protected. These are protected health information. They’re kept confidential in a separate file at your employer, and then you have to go the next step, which is to say what accommodations you think you need. And I would say this is the place where people get bogged down the most. The saying I have a disability, maybe producing a letter from your treating professional stating the nature of the disability and the impairment and why it’s causing you problems at work is important because that establishes the causal link between the disability and the limitations that you’re reporting and experiencing. But the next step is what you want your employer to do. And it may just be you need an hour a day or 10 minutes a day to take time out, or you need time to take medication, or you need time to go to an appointment in some settings that’s not part of the employment contract.
Michael Kirkman: Employees don’t have paid sick time and those sorts of things, so that would be an accommodation, something the employer is going to do to accommodate the disability. And this is where it gets tricky because you need to have the support of your treating professional at that detailed of a level to support your request for accommodations and lots of treating professionals. Don’t get that. And as a lawyer, I would reach out to them and say, No, no, we need a little more. You need to be a little more specific about Joe or Susie and why he/she needs this particular accommodation. And that’s how you can move those things along if there’s disagreement. Now, a lot of employers simply will work with you and they have someone in the HR office who’s used to doing this and will help you with that. But it’s really important that you represent you have a disability, that the disability is causing you to have this limitation in your work environment and that you’re treating professional recommends this accommodation, this to allow you to remain a useful employee, basically.
Rachel Star Withers: Now, what if I have schizophrenia and I’m managing it, I’m very stable. I’m going to work. However, I might want them to just be aware that something could happen. I could relapse. Should I go to my employer and tell them that, like just so they’re aware that I have a mental disorder, even though I don’t at the current time need any accommodations?
Michael Kirkman: Because we’re on the phone, you can’t see the look on my face, which is kind of confounded.
Rachel Star Withers: Ok.
Michael Kirkman: I don’t know. So much depends on the relationship with your employer and who your employer is. I would probably not advise a client to do that if everything is going well and you’re doing what you need to do and they think of you as a valued employee, then why bring it up?
Rachel Star Withers: Ok.
Michael Kirkman: There’s really no reason to if they know you socially and they would be in your circle of friends in some fashion on social media or whatever. And you talk about your disability there, then that’s a reason to be more open about it. But that’s in a relationship that sounds where it sounds like it wouldn’t be a problem.
Rachel Star Withers: Ok. But let me give you an example. So with my schizophrenia, one of my past jobs, 99% of the time, I am OK. You would have no idea that I’m any different from anyone else. However, now and then my speech would start to slur, and the students that I was working with would tell me that I was speaking too fast. They could understand me to an outsider. This looks like I’m on drugs. However, it’s just part of kind of my mind messing up, so I always had to tell my job about it. What about those situations?
Michael Kirkman: That’s a good example of where there’s a reason to tell,
Rachel Star Withers: Ok.
Michael Kirkman: Because they’re looking at your job performance and your clients, the students, they’re not complaining, but they’re making observations and that will maybe get back to your employer. So it’s in a very informal way, seeking an accommodation. So you do need to say this is why I’m doing this and I just need you to let me work through that. But again, there’s a reason to do it, as opposed to just saying, Oh, by the way,
Rachel Star Withers: Ok.
Michael Kirkman: I have whatever diagnosis, then they’re going to go, Oh, you’re an ax murderer or something like that. Because of all the discriminatory media portrayals and historical portrayals of people with a significant mental illness is part of our culture.
Rachel Star Withers: Ok.
Michael Kirkman: So but if it’s happening and it’s impairing your ability to work, then you are in a situation where you need to ask for an accommodation, even in an informal fashion.
Rachel Star Withers: What if I feel that I’ve been discriminated against or am being discriminated against in my job, how long do I have before I need to report it?
Michael Kirkman: The timelines for doing complaints under the ADA are very short and people don’t know that. So they don’t act and they lose their ability to file a charge. You have to file a charge with the EEOC no later than 180 days after you discovered there’s discrimination or some act, some discriminatory act as happened. Under other laws, you may have longer. But the primary law here is the ADA title one, and you have 180 days to file with the EEOC and EEOC.gov is a really good resource for all of this, and it includes a charging form that you can fill out electronically.
Rachel Star Withers: With the ADA talking about pretty much all of America, I do know different states have different laws, but what if I’m working for a nonprofit or religious organization?
Michael Kirkman: Well, there’s two different answers.The nonprofit is covered to the same extent as a for profit business would be covered. So you have the 15 employee cut-off. Religious organizations break into two different groups. Churches, houses of worship are exempt from the ADA, generally. As a rule, it’s explicit in the statute. Where we’re seeing cases now, and this has largely been around protections for LGBTQ teachers in church schools and places like that. We’re seeing some trend towards granting broader protections for religious affiliations against civil rights statutes and protections. But it’s just been going on in the last five years. It hasn’t extended to the ADA. But as a general rule, the ADA would apply, for example, to a religious school unless it somehow butted up against an aspect of the religious doctrine of that school that the sponsors of that school. I would say you can’t sue a church, but you can sue a church school.
Rachel Star Withers: Ok. Just following up on that, can you sue a pastor or like the leader of the church if they were your boss?
Michael Kirkman: Under the ADA, I would say no.
Rachel Star Withers: Oh, OK, that’s interesting. Let’s say I don’t have the job yet if I know that I’m going to need an accommodation due to my schizophrenia. Should I mention that in the interview?
Michael Kirkman: Generally speaking, I would council No.
Rachel Star Withers: Ok.
Michael Kirkman: There’s no reason to. You’re already in the interview, so you’ve met the qualifications they’re looking for. After the interview and you get an offer, then it may it could be a good time to bring it up as an accommodation. It’s also just a good thing as an employee to be clear with your employer about your limitations. It’s an interesting question, because the general advice that I would give would be not to disclose during the job process. When you get the job, you can then talk about it. And of course, they can tell you you are keeping the job.
Rachel Star Withers: Ok.
Michael Kirkman: I want to be clear, that’s my personal bias based on my experience. You may feel comfortable saying something in the interview, but there’s so much negative stereotyping and so much bias against particular schizophrenia in the society
Rachel Star Withers: Yes.
Michael Kirkman: Because people don’t understand it. People have no idea what it means. So if you can keep that word out of the conversation, that’s to your advantage, it seems to me.
Rachel Star Withers: Ok, so let’s say I’m applying for a job and they run a background check, will anything about my schizophrenia come up in that?
Michael Kirkman: It could. It depends on whether there have been interactions with law enforcement and police reports that would be available to them, that would detail that. Judicial orders of commitment are public records. They could show up if they run a court check. So it’s possible in a background check that they could gain information that hints at a mental illness or actually specifies that you’ve been committed to a hospital.
Rachel Star Withers: Along those same lines, let’s say, in the past, I’ve had an issue, I had a psychotic episode and I was arrested or whatever, and I have to put that down on the application. Yes, I was arrested before. Should I then say put a little note, like at the time, I wasn’t medicated for this mental disorder? Do you think that would be a good way to go or to try and explain what happened?
Michael Kirkman: Well, yeah, it’s an interesting question, because you’re not arrested for the mental disorder and the crime that you’re going to be charged with most times will be a vagrancy or a trespass or some other
Rachel Star Withers: Yes.
Michael Kirkman: Misdemeanor crime. Again, it’s a judgment call about whether you want to provide more information pre-employment. If the employer’s concerned, they can hire you conditionally and ask you to take a medical exam before they finalize the hire. Again, it’s one of those things where you’re going to have to use some judgment going in, but in most cases, my recommendation is to get through the application process and see what happens.
Rachel Star Withers: If I’m working at a job and let’s say someone finds out that I have schizophrenia, let’s say I accidentally told a coworker and I shouldn’t have, and they go and gossip all over the building and I notice I’m starting to be treated differently now that everyone seems to know what should I do in that case?
Michael Kirkman: It’s a good question, because it’s not something that would be clearly illegal problem
Rachel Star Withers: Right.
Michael Kirkman: Per say, depending on the employer, air might be a resource for you. They might have a policy about essentially a hostile work environment or fundamentalists normally used in a gender sexual harassment kind of context. Having supports and dealing with coworkers and their attitudes is actually an accommodation that could be asked for. It starts to affect your job performance. So all of that is more of a dialog with your HR people or your boss and to see what they think they can do. And then, you know, you could talk with them and help them to understand that the fact that you have a label medical diagnosis label applied to you doesn’t make you less of a good coworker and less skilled at what you do in your job.
Rachel Star Withers: Ok.
Michael Kirkman: That’s not a legal answer, but
Rachel Star Withers: Right.
Michael Kirkman: That’s, you know, those are the kind of things you are entitled to ask for in the nature of an accommodation.
Rachel Star Withers: A lot of times with schizophrenia, a loved one, a caretaker is very much involved. Is there anything that a caretaker can do if they feel that the person with schizophrenia is being discriminated at work? You know, should they kind of go in? I know we have so many moms out there of adult children who have issues and you know, they want to they want to be like the Big Mother Bear and go in. What can caretakers do if they know that the person with schizophrenia is not being treated fairly?
Michael Kirkman: Well, the person with schizophrenia has to be present and have agency in the matter. But they can also have someone to help support them, and that can be seen as an accommodation as well that can be there for them. The person has to be careful not to practice law, not to be act as a lawyer, but can deal with factual things and help the person with schizophrenia to make their arguments, write their letters. Those kinds of things. And also to help them find legal representation. So there’s lots of roles to play.
Rachel Star Withers: Well, Michael, thank you so much for being with us here today. You’ve shed so much light on the disability rights and kind of the next steps if we’re experiencing that. So thank you so much, Mr. Kirkman.
Michael Kirkman: It’s been my pleasure, thanks, it was great to talk with you.
Gabe Howard: Rachel, what were your initial thoughts?
Rachel Star Withers: Speaking with him, I’ll be honest, it kind of threw me a little bit because he was so blunt talking about how schizophrenia would be seen to employers a lot of times, I think it’s easy for me to kind of forget that it is a scary word, you know, and he was very, you know, upright about that, like what people were here disclosing. I think he really hits it home that it’s a big decision to make. It’s not something to just kind of flippantly, Hey, I’m going to go tell some people at work. It is something you know in your life to think. What are the pros and cons of this? And there could be some very serious consequences. And while you have the ADA and everything, and that’s great, OK, if I get fired from my part time job, I think because of schizophrenia, it’s going to be very hard for me to hire an attorney or whatnot for the job that I made minimum wage at working 15 hours a week. There are some very harsh realities that we have to face when it comes to this disclosure.
Gabe Howard: Rachel, I’m preparing for this show, I asked myself the question, should people disclose or should they not disclose? And I always come back with the exact same answer, which is entirely unhelpful for the cause. We need as many people to disclose as humanly possible. Go to work. Show your coworkers that you’re holding down the job. That you’re paying taxes. You’re productive in the community, that you’re doing all of the amazing things that all of us are doing. We are all incredible people doing incredible things and nobody, nobody will know that we’re living with serious and persistent mental illness unless we tell them. And then immediately, I say, but then again, don’t. Don’t because you don’t need these problems. Why are people judging us and the stigma and the discrimination? And you might get fired and it could it could prevent your ability to work, get promoted, make more money, carry your health insurance. You don’t need small minded people ruining your day so you don’t have to share with them. They’re just coworkers. Go do your job, come home, cash your check and just tell your friends, right, just make work work and make home home and their problem solved.
Gabe Howard: Those two things are mutually exclusive. And it’s why it’s so incredibly individualized. Obviously, Rachel, you and I have made the decision to live very publicly, and it that’s a privilege. We have that ability. We are privileged to have been allowed to make that decision if my life was different, if my support system was different, if my socioeconomic status was different, if my race was different, if there are so many things that if they could be different, I might have had to prioritize stability or safety over advocacy. And I just want to be very, very clear that not everybody can make the decision that we made. It’s a place of privilege to be able to stand up and say hello. I live with psychosis. I live with a mental illness and I want everybody to see how well I’m doing. And I understand that not everybody can do that. I just don’t want anybody listening to this to think that they’re required to make a decision or that there’s even a correct decision to be made.
Rachel Star Withers: Disclosing you have a serious mental disorder, it’s a major decision, and it’s a very personal decision that you’re not just going to make once you’re going to have to make it over and over again and not just at work, but other extracurricular activities, relationships, you know, if you’re an intramural soccer league, you might want to tell people. So we got three tips here to help you know when to tell number one when you’re well. Ideally, you don’t want to be in the middle of a psychotic episode when you decide to disclose to everyone that you have a mental disorder. Try and do it on a time that you’re well. You’re feeling good. Pick a calm environment and practice in your head. What you’re going to say no to when it serves a purpose. Like we said earlier, if you don’t need an accommodation at your job, you might not need to disclose that you have a mental disorder. However, the purpose may be that you feel like you’re hiding and you don’t want to hide anymore. Decide the pros and cons that’s up to you. And last, when you’re ready, telling people is a very personal decision, and ideally, we don’t want to go through an inadvertent disclosure. So if you’re going to tell people about it, make sure that you’re ready and make sure you’re ready to face the stigma that might come with it. This is a very personal decision and don’t make it unless you’re ready to make it.
Gabe Howard: Rachel, I love that, I absolutely love that.
Rachel Star Withers: Thank you for listening to this episode of Inside Schizophrenia. Please, like, share, subscribe and rate our podcast and we’ll see you next time here on Inside Schizophrenia, a Healthline Media podcast.Announcer: You’ve been listening to Inside Schizophrenia, a podcast from Psych Central and Healthline Media. Previous episodes can be found at PsychCentral.com/IS or on your favorite podcast player. Your host, Rachel Star Withers, can be found online at RachelStarLive.com. Co-host Gabe Howard can be found online at gabehoward.com. Thank you and we’ll see you next time.