Navigating Your Career When You Have a Disability

NICOLE BETTE: It is always really interesting, whenever my colleagues have seen me for the first time with a wheelchair, they usually ask, “What happened?” And it’s hard to answer, it’s like, “Literally nothing happened to me. I did not have any accident.” Yeah, just I don’t know how to answer. I will say something like, “Oh no, I’m okay. I have a connective tissue disorder.” And leave it at that.
MEREDITH KOCH: People are naturally curious, I get that. And when I’m out in public… I don’t have this happen in my actual office, but I can be out and someone’s like, “Oh, were you in a car accident?” And I just look at them and say either: A, “no,” and I wheel away; or B, “actually I had a piano fall on top of me” and then I wheel away and then they just don’t even know what to say, and who’s uncomfortable now?
AMY GALLO: Nicole Bette and Meredith Koch are engineers who our podcast team met at a Women Impact Tech conference here in Boston. Over the past few years, they’ve bonded over conversations about disability, a topic that Meredith feels a lot of us are scared to talk about including at work.
MEREDITH KOCH: I think because it’s so personal and there’s so much that you just don’t understand about it. While I’m very open about sharing that I’m an incomplete paraplegic, how I got hurt, when people start being like, “Oh, what’s wrong with you?” That’s not the right approach. Get to know someone as a person and then over time it’s like you begin building these partnerships. I’ve got a couple people at work that I need something, I can text them and they will come help me and there will be no questions asked.
AMY GALLO: This sort of goodwill is one of the perks of cluing in a close colleague or two. That’s how 58% of employees with a disability cope, according to a 2020 global survey done by Accenture. 24% are transparent with everyone. Another 18% keep their condition or conditions a secret. Secrecy is an understandable choice given the bias still out there, even though one in four adults in the US have some type of disability.
MEREDITH KOCH: Disability and health conditions, they are just so wide-reaching. You ask 10 people with a spinal cord injury, 10 people with autism, 10 people with a stroke. Everyone’s had different experiences and there’s a tendency for someone to say, “Oh, well, I know a person that got hurt this way and after two years they were walking.” And I’m like, “Congratulations to them. That’s amazing.”
NICOLE BETTE: And yoga worked for them. Have you tried it?
MEREDITH KOCH: Yes. That are like, “Oh, have you heard of this clinical trial?” I’m like, “Yes, I know of that clinical trial, but I’m not eligible for that clinical trial.”
NICOLE BETTE: Unsolicited advice.
AMY GALLO: You are listening to Women at Work, from Harvard Business Review. I’m Amy Gallo. Approximately 10% of working women have a disability, according to McKinsey and Leanin.org’s Women in the Workplace study. Meredith and Nicole advocate for that 10%, as well as all employees with apparent and non-apparent disabilities. They’re here to share their experiences getting the understanding and environmental changes or assistive technology, or both, that makes doing the job possible, or at least so much more manageable. They’ll share how they’ve refined the ways they disclose their conditions and how they’ve asked for accommodations and either gotten them or not. In their stories are also lessons for managers about responding to team members’ requests and coming up with ideas when they’re not sure what they need.
MEREDITH KOCH: Nicole, I want to start with you because I saw a post of yours on LinkedIn where you talked about Meredith having an important role in your journey to accept your disability and use a wheelchair. Can you tell me about that?
NICOLE BETTE: I was working on a project with Meredith’s company and I had spoken with Meredith on Zoom calls in different meetings, but I didn’t know much about her and I could only see her torso, so I didn’t know if she was disabled or if she used a wheelchair.
AMY GALLO: Got it.
MEREDITH KOCH: I forgot about that part. Looking over Zoom, because I interacted with some of your colleagues in person, and so they saw me with leg braces and form crutches, but I wasn’t using my wheelchair in the office for them. But you were on the remote side of that project, not on the in-person side.
NICOLE BETTE: Yeah. But later on in conversation with my colleagues, I mentioned that I wanted to get involved in disability advocacy, and also separately, I was considering using a wheelchair and one of my managers, she said, “I think you should talk to Meredith. I think she would be a really good resource for you.” And yeah, I reached out to her. I had never met another apparently disabled person in my industry. So, I decided to reach out to Meredith and asked her, not only about her experiences, I learned about her TED talk and her advocacy. She showed me how to best advocate for accessibility in the workplace in general, and as we got to know each other more, we got a little bit more personal and I asked her about my own disability and my own exploration of using a wheelchair and coming to terms with that choice.
AMY GALLO: Yeah. Meredith, when you were talking to Nicole about your experience, what were you drawing on to give her advice?
MEREDITH KOCH: By the time Nicole reached out, I had been paralyzed for about five and a half, six years, I think. And I had gone through my own journey of coming to terms with my disability. I acquired a disability at the age of 25, broke my back and was paralyzed from the waist down, was able to learn how to walk partially again thanks to Spaulding Rehab, but it took me two years to get to a point in my own job of being comfortable using a wheelchair. I would force myself to go into hospitals as a medical device rep on form crutches and using lower leg braces. And by the end of the day I was in so much pain and it just got to a point where I said, it’s more important for my quality of life and for me to be able to do my job the best I can as opposed to really caring about other people’s perceptions of me. And I had this thought in my head that as someone who was younger in the fields that I was in, working with world-class electrophysiologist and cardiologists, that they would think less of me if I was in a wheelchair as opposed to if I was using crutches and leg braces. And that’s part of why it took me so long to be comfortable being in a wheelchair in the workplace.
AMY GALLO: Nicole, what were your concerns about people’s perceptions of you at work?
NICOLE BETTE: It’s hard to answer. I don’t know. I guess part of my job, I’m a human factors engineer, part of my job is to do usability studies. So, I would go into places like simulated or settings or simulated clinics or simulated home environments and study people using medical devices. And I would have to stand a lot of times in OR settings. Every now and then I did need to use a cane or crutches or something for if I had a subluxation or a dislocation that I’m prone to. But at the end of the day, I was just so exhausted. I just couldn’t function. I was wasting all my energy just walking. And I was worried, I think, of having to ask for accommodation. I was worried that I would be thought of as not being able to do the job, not being able to be in that room. I couldn’t envision because I had never done it, I couldn’t envision how can I actually observe participants use this system if I can’t easily maneuver around them? And then if I can’t envision it, can my leadership envision me being able to do this?
AMY GALLO: What about Meredith’s story or her advice changed your concerns or helped you make the decision to use a wheelchair at work?
NICOLE BETTE: I think it made it feel like less of a big deal. And not only Meredith, but other amazing professionals using wheelchairs and being successful in technical careers, if that makes any sense.
AMY GALLO: It makes total sense. When you have fears about something, seeing someone do it without fear or overcoming their fear, I can see how that would encourage you to make a different decision. Meredith, I want to talk about your TEDx talk for a moment. In 2018, you did this talk, which was fantastic.
MEREDITH KOCH: Thank you.
AMY GALLO: Everyone should watch it. But you mentioned that after your accident you redefined your hopes and dreams. I’m curious how your career aspirations fit into that. Did you rethink those as well?
MEREDITH KOCH: There was a lot that I thought about. There was a lot that I doubted. I have this distinct memory of being in my inpatient bed at Spaulding Rehab, so this was maybe three weeks after I got paralyzed. At this point, I had learned how to roll and I could get into quadraped, and I think I was crawling and learning to stand again. I mean, we are so basic on activities of daily living, I hadn’t even learned how to do all my independent self-care. And I had an emotional breakdown because, one, I didn’t know how I was ever going to pump gas again. Two-
AMY GALLO: That’s an interesting task. Yeah.
MEREDITH KOCH: Two, I thought I would never walk down the aisle to get married. And three, I said, “Who would ever want someone in a wheelchair in an operating room?” Don’t ask me why pumping gas was so important to me other than your car is independence. And it was starting to meet those people, so just like Nicole met me, I met individuals with different types of disabilities who have full-time careers, who are married, who have children, and I was able to talk to them.
AMY GALLO: Pump gas.
MEREDITH KOCH: And they pump gas. And talk to them and say, “So is this possible? What did you have to do differently?” I was in a job that I absolutely loved, but it was very physical and I had to learn how to put electrodes onto patient’s chests and arms again, to be able to check their pacemakers and not fall in their laps when doing that, because I was the first. I couldn’t ask my coworkers, “Hey, has anyone ever done this sitting before?” “Hey, how else can you move this 35-pound programmer other than just carrying it?” So I referred myself as adaptively abled, and I take that from adaptive sports. I don’t see myself as disabled. I just adapt how I approach things, and that’s really how I’ve approached my career as well. So I did my job in the field for four and a half years, totally loved it, and got to a point where my physical health was taking a hit. I just couldn’t get to my PT appointments, and I said, okay, it’s time to shift gears, pivot. So I switched to clinical systems engineering, and now I don’t have that physical element every single day.
AMY GALLO: Nicole, I want to hear how your career aspirations have shifted, or not, based on your disability.
NICOLE BETTE: I have always been interested in the medical world ever since I was a kid. I didn’t know if I wanted to be a doctor, but all I knew is that I wanted to help heal somehow. I was also very creative. Everything that I did was all about problem solving. Engineering felt like a very natural career to pursue for me, and I went into human factors engineering because I noticed, this is before I understood my disability or had a diagnosis or anything, I understood that you can have a technologically perfect product and it could fail for reasons that are not technical, could fail because they’re not easy to use, they’re not culturally sensitive. I mean, there’s a million reasons, it’s not…
AMY GALLO: I think about the example of automatic soap dispensers that weren’t recognizing darker skin.
NICOLE BETTE: Exactly. That’s a perfect example.
AMY GALLO: Perfect example.
NICOLE BETTE: Exactly. There’s even medical devices that use optical sensors and they don’t work as well for people with darker skin, like forehead thermometers, pulse oximeters. So, I got into human factors engineering to try to make things more usable, safer, effective, and to reduce the risk of medical mistakes. When I got diagnosed, the process of getting diagnosed, not just the actual day that they say, “Oh, Nicole, we think you have this.” No, it was the whole journey of having to go to medical appointments and seeing the clinical side actually was helpful for me. I learned a lot. It was weird. It’s like, okay, I’m learning about myself, but I’m also learning about medicine. It’s like it gave me a huge amount of exposure and empathy into clinical care. There’s not enough knowledge and research on disabled people, so when a company’s making a medical device, they don’t think about disability. So, most medical devices are inaccessible to people, for example, who are blind. Sometimes people who are deaf or hard of hearing. They don’t consider different body anthropometrics, meaning sizes, heights, weights, if you use assistive devices or not. So, in a way, yes, my disability shifted my career in the sense that I realized there’s a huge issue with inaccessibility. And so that’s what I’ve been focusing on, both at work and outside of work advocating.
AMY GALLO: I mean, it sounds like you were already drawn to this field, but then your own personal experience just probably makes you so good at what you do.
NICOLE BETTE: It enhances it a lot. I feel like I have so much more awareness and empathy when I’m working on this and I have to think about risk and I have to think about different types of people. There’s no way that I can account for everyone. All I can do is think, okay, don’t forget to consider these people. Let’s get participants that use a wheelchair in here. Let’s get participants that are colorblind. Let’s really include more diversity in our pool of participants when they’re testing medical devices so that we have a better understanding.
MEREDITH KOCH: When you think about employing individuals, you want that diverse perspective of thought. And individuals with disabilities, chronic health conditions, we see the world and spaces completely differently. That means how we interact with products. We are used to adapting and overcoming challenges. When I was working as an engineer, when I was working in the field as a sales rep and now managing a team, I say, “Okay, well, if we can’t do this, then can we do this, and then that, and then that?” People go, “Oh, we didn’t think about it that way.” Because oftentimes people see how it’s done and they say, we have to keep doing it that way. And when you have a disability or a chronic health condition that you are dealing with day in and day out, you are so used to saying, I may not have a roadmap on how to do this, but I’m going to figure it out. So, at work, I think the competitive advantage is that you have this whole source of innovation and people who are not afraid to adapt, to be resilient. And when we look at companies and they are promoting gender equity of pay, when they are talking about being ethnically diverse, that’s wonderful. But oftentimes when you dig into annual reports or DEI reports, you don’t see a metric of how many employees have a disability because either, one, it’s such a small number that the company doesn’t feel that they can disclose that without potentially breaching confidentiality of an employee. Two, employees are scared to self-identify for fear of retaliation. Or three, maybe they would be willing to disclose, but they don’t know that things like ADHD, depression, autism-
NICOLE BETTE: Anxiety.
MEREDITH KOCH: Anxiety, all of these things, they don’t know that that actually qualifies as a disability. So they aren’t disclosing that.
AMY GALLO: Right. So, then the numbers are so small and you don’t get a sense-
MEREDITH KOCH: So, you don’t have a true reflection of it.
AMY GALLO: Yeah. Let’s talk about the experience of disclosing or not disclosing. Nicole, how do you think about disclosure of your disability and how people will respond and how they do respond?
NICOLE BETTE: For me, it depends on the disability that we’re talking about. I have multiple disabilities and chronic illnesses. So, the ones that are more prominent that I think disable me the most and affect me the most are Ehlers Danlos syndrome, hypermobility type, postural orthostatic tachycardia syndrome, which is an autonomic nervous system dysfunction that causes lightheadedness and fatigue, among other things. And neurodivergence, in my case, I have ADHD and autism level one, which is high functioning autism. But in terms of disclosing, it is tricky. If I’m not using a wheelchair that moment or an assistive device, people can’t see, they may not be able to tell, for example, that I’m in pain, that I have fatigue, that I have hives. I have another condition where I have vibratory urticaria, so when I walk, it triggers hives so my feet get itchy. So, they may not see all of those things that are not apparent. Now, in terms of disclosure, there’s not a lot of disclosure that happens in terms of the assistive devices. When they see me, they ask questions and I can choose how to answer them. It’s always really interesting, whenever my colleagues have seen me for the first time with a wheelchair, they usually ask, “What happened?” And it’s hard to answer. It’s like, “Literally nothing happened to me. I did not have any accident.” It’s interesting. And I will say something like, “Oh no, I’m okay. I have a connective tissue disorder.” And leave it at that. It depends on, I kind of try to gauge by how the person asks whether they’re interested in hearing more. Sometimes it’s like a passing, “Are you okay?” And sometimes it’s like, tell me your whole life story. And it depends on how comfortable people are sharing. I am pretty open. I’m an open book because I want to be an advocate, so I’m putting myself out there. But not everyone is comfortable, and that’s okay. And then for the neurodivergence, it’s tricky. I just got diagnosed with autism last Thanksgiving, so this is newer to me. But with ADHD, I’ve decided to be pretty open, but I’ve changed my approach. Instead of disclosing and saying, “Oh, I have an ADHD.” I just say, “Hey, I have ADHD, and sometimes this happens and this is what would be helpful.” Or, “If I do this, let me know.” Interrupting is something I do a lot and it’s an impulse and it’s hard. And then with autism, it’s a communication discrepancy. I used to think I have trouble communicating, but now my perspective has changed. I don’t think I necessarily have trouble communicating. I have trouble communicating with people who use a lot of nonverbal and implicit communication styles. So, I am very direct and blunt in my approach to communication. I like everything explicit, I would rather everything be completely laid out. And when I meet people who are like that, there’s absolutely zero communication issues. The expectations are clear and everything is communicated. But when somebody tends to imply things or expect me to read the room, that makes it difficult. And I have now accepted I don’t think it’s a me problem. I think that everyone could benefit from our direct communication. That’s all.
AMY GALLO: Right, yeah. And the choice to disclose or not… I can understand the choice to disclose because you want to be an advocate, that makes sense. But then there’s also the choice of, will it make this interaction go more smoothly or help them understand better or maybe help them make an accommodation. But as I’m saying that, I’m like, well, then is it just you’re disclosing to make it easier for them or does it make it easier for you?
NICOLE BETTE: I like to think it makes it easier for me, especially when it comes to behavioral things. So, interruptions or being very excited and speaking really fast or talking through my thoughts, like thinking out loud and then being like, oh, actually no, that’s not what I want to say, I’m going to backtrack. That thinking out loud can be annoying to people who are not used to it, to some people, people maybe who are a little more impatient. And in that situation, people can be very judgmental. I have found a lot more willingness to accommodate my physical disabilities than non-apparent, than my neurodivergence. And so, I’ve had to be like, no, this is, it’s part of my disability and I need this.
AMY GALLO: Why do you think that is?
NICOLE BETTE: I don’t know. I think that maybe people like to think that you have full control, that we all have full control over our behavior, that if you just practice enough, it’s all in your control.
AMY GALLO: “You could overcome your autism or your ADHD if you just tried harder.”
NICOLE BETTE: Exactly. Exactly. And the reality is that no, it doesn’t work like that. I am always autistic and always with ADHD. If I’m feeling really good, like if I have slept well, if I’ve taken my meds, if I am just having a really good day mentally, I can mask better and pay more attention. I have more bandwidth in my brain to pay attention to little cues in behavior of other people so I can adjust. Sometimes if I’m tired or physically just not feeling well, it’s like my resources are taken up by that and I have a harder time changing my behavior, and I’ll be more, maybe a little more oblivious and I’ll just… might interrupt more or blurt something out. I don’t know. Yeah.
AMY GALLO: I want to hear more about the accommodations people are willing and not willing to give and how you ask for them in a moment. I want to hear from both of you, but Meredith, tell me a little bit about your feelings or thoughts around disclosure and how that’s worked for you and your job.
MEREDITH KOCH: I can’t show up anywhere without someone, unless it’s virtual, without people seeing that I have some form of disability. So, it’s really on a need-to-know basis. When I got hurt and I was in the field, everyone knew what happened to me. I mean, I had a piano fall on top of me and paralyze me from the waist down. That is not a story that just kind of gets swept under the table. I got a new manager recently and I met with her for the first time and she had no idea who I was. She was from a different part of the company and now I report into her, and it’s been a wonderful relationship. But in our first meeting, I said, “Hey, just so you know, this is who I am. This is my story. It’s not super private what my disability is because I’ve talked about it a lot at my company,” but I was like, “I just want you to know this is what it is. Sometimes you’ll see me in a chair, sometimes I’m on crutches. I do still do PT. Are you okay with the fact that I flex my hours a tiny bit?” I schedule PT before work or later in the day, but there’s some appointments I physically have to have in the middle of the day. I’m like, yeah, it’s totally fine. So, that need-to-know disclosure, or if I need to ask for an accommodation, then that’s a different story. But my favorite experience being in this, quote, unquote, new job that I’ve been on this team now for four and a half years, I used to use my crutches predominantly for commuting because I was able to walk and I loved the walk from the train. And then one day I chose to use my wheelchair and someone says to me, “Hey Meredith, it’s okay if you don’t want to answer, but can I ask why you’re in a wheelchair today?” I said, “Honestly, I wanted to wear cute shoes and my braces do not fit in these shoes, and it is 90 degrees out, and I just wanted to wear sandals. So, I’m in my wheelchair so I can wear sandals.” It’s like, it’s great reason to me. And then three engineers walk into the room and they go, “Ooh, that’s snazzy. What kind of wheels are on those? How much does that weigh? What’s it made out of?” I was like, this is-
AMY GALLO: So engineers.
MEREDITH KOCH: The best experience of my entire life, of just feeling so supported and they engaged with my disability in a way that made it seem like someone just wanted to talk about what I’d done that weekend and just nerd out over the technology. I was like, I have found my people. Right.
AMY GALLO: Nicole, you were nodding throughout. Tell me, does that resonate?
NICOLE BETTE: Yes, multiple things resonate. I’ve definitely experienced the nerding out. And then I also related to the heels thing because I thought I would never be able to wear heels again. I couldn’t handle it. It hurt my feet and my legs and my ankles were unstable because of the Ehlers Danlos, and I just gave up on it. So, I literally was wearing the exact same shoes that are made for nurses for, I’m talking years. I was wearing the same shoes. And when those would wear, I would buy the same shoes. And it was sad. I was like, I would wear these fancy suits and stuff and just wear those shoes.
AMY GALLO: Sad shoes.
NICOLE BETTE: Yeah, and then when I got in my wheelchair, a friend of mine invited me to go to a concert, and then I still hadn’t thrown away my heels. I had these boots with heels, and I had this moment of realization, just I was so excited. “Wait, oh my God, I can wear heels. I can wear heels with my wheelchair.” I was pumped and I felt so feminine. And everyone can express their gender how they want to, I’ve identified with that and just wanting to feel feminine and project myself in a feminine way and being able to wear the cute heels and the dress and the skirt and all these things. And so, I was pumped.
AMY GALLO: That is a perk of a wheelchair I’ve never thought of. One of the things that I hear over and over women talk about getting feedback about at work is executive presence and this idea that you will have gravitas, how you’re perceived, and I know one coach who even calls it your book cover. But it’s very much about physical traits or physical presence, like how you stand or how you hold your body or what cues you send or whether you can look someone directly in the eye. And so, I’m curious, first of all, do you think about executive presence? Maybe not even that term, but sort of how you would be perceived as a leader or as a professional, and what thoughts or reactions come up when you hear about that?
MEREDITH KOCH: I think it’s hard not to think about it if you’re in an industry where you are trying to grow your career and that you’re in the room with people who are senior, or much more senior to you. I’ve actually never thought that my wheelchair or my crutches makes me seem less professional. I really think it’s about how you hold yourself. And I sometimes do choose to stand up to shake someone’s hand or to meet them. That’s a choice that I am very blessed to be able to make. But I met the CEO of my company sitting in my wheelchair, and I wasn’t thinking to myself, ooh, yeah, he’s probably wondering what’s she doing? No, not at all. He’s like, “So nice to meet you.” I was like, “It’s nice to meet you too.” We had this great conversation. And it’s more I think about being engaged with someone. In terms of how I dress, I have a whole two pairs of shoes that my braces fit into, and it’s just one of those things that I’m like, this is who I am, I’m comfortable with it, and if you aren’t comfortable with it, then you probably shouldn’t be evaluating my performance or my capabilities.
AMY GALLO: Nicole, how do you think about executive presence and how people perceive them?
NICOLE BETTE: It’s something that I’ve had to give a lot of thought and practice to. I have attended seminars on public speaking, gravitas, branding, how you come across, especially in the world of consulting. I’ve done consulting and you mentioned eye contact and I left because I have autism and eye contact is something that’s hard for me. I practiced a lot, so my dad since I was growing up would tell me, you have to make eye contact because he would notice that I didn’t, and I felt that light were coming out of the eyes of people. I didn’t want to look at people’s eyes.
AMY GALLO: You felt what coming out?
NICOLE BETTE: I felt like light, it was distracting. It’s like if I had to make eye contact, I could only focus on making eye contact. It’s like imagining as if were lanterns, just like this bright light shining from the eyes of people. This is when I was a child. That’s how I could describe the feeling of I can’t focus on what you’re saying because I have to hold eye contact. And I’ve seen now that I’m older and I understand more and have the diagnosis, I’ve paid attention to the autism community mentioning similar things. Anyway, my point with that is that if somebody is a little bit awkward, maybe they don’t make as much eye contact or their facial expressions don’t match what you expect and you can’t quite put your finger on it, they may be neurodivergent, so don’t judge too harshly. There’s other ways to show presence and engagement that don’t have to fit precisely the mold that you think.
MEREDITH KOCH: That just reminded me of the fact that we have diverse interview panels, so you have to have representatives from other teams interview your candidates. And within the last six months of doing this, I was interviewing someone and then the whole interview panel came together and someone made a comment about this person not engaging in great eye contact and not being as sociable. And I said, “Well, does that matter for this job?” And it took some people aback that I said this person was able to give specific examples about what they did. They were able to answer the question. Sometimes it diverged a bit, but you were ultimately able to take away the information and they clearly have the knowledge to do to the job. When I’m looking at your job description, is being sociable and able to have small talk necessary? I don’t think it is. This person seems like the most qualified individual for the job.
AMY GALLO: That question though that you asked, Meredith, is I think really important. Does it affect your ability to do the job? And I think it’s a good way to also test our own bias when we find ourselves questioning, ooh, will she be up to the task, or does she have what it takes to be a leader? Will her team take her seriously? Will our client take her seriously? It’s like, well, does what I’m concerned about affect the ability to do the job?
NICOLE BETTE: If you hadn’t been in that room, maybe they wouldn’t have given more thought. They might have been focused a lot on the social aspect. So, this is why it’s important to hire disabled people.
AMY GALLO: The business case, we have made the business case. Yeah, episode over. Thank you very much. All right, I want to get back to accommodations because I’m curious for both of you, what accommodations have you asked for in your workplace and what was that experience like? And actually, Nicole, since you referred to earlier about your autism and ADHD, have you asked for accommodations around those specifically?
NICOLE BETTE: Yeah, and I’ll say I don’t have the best happy story.
AMY GALLO: That’s okay. We’ll learn from it either way.
NICOLE BETTE: I mean, I have good and bad experiences. The first time that I remember asking was at a private company that I was working for, and they had an open plan set up, and I was having a really hard time focusing. So, my little desk faced the open area and I could see the door, so anytime someone would come in, it was visually distracting. There were people moving around and I had no visual barrier, and the noise was bouncing off of everything. There was just very little noise absorption. Although there was carpet, I think that probably helped a little bit, but noises were just distracting. So, I asked for noise-canceling headphones. That felt like a very tangible accommodation, and they weren’t that expensive. So, I looked up how to best ask for an accommodation in the most official way possible. And I read that it’s better to go to HR than to go to your manager for permission. It’s both to protect yourself and for the company to protect itself. So, if you ask your manager and they say yes right away without understanding the implications, they could be putting themselves at risk because they already said yes, but maybe it’s not a reasonable accommodation. Or if they say no, they could be making themselves liable because they’re denying an accommodation. So, I didn’t go to any manager, I went to person who was representing the HR function. So, I went to this person and they said, “It’s not a problem. Send me the information about the…” I say headphones. And at some point later, I got called into an office of one of the leadership of the company, and they were asking me why did I go behind their back to ask for headphones and that they didn’t want to create an environment where people were isolated from the rest of their peers and that’s not why they started the company. They didn’t want people to be in their own world and not connecting with their colleagues. And they also said that my disability was not real, that ADHD was not real, and that I should be so grateful that I was hired at all.
AMY GALLO: Oh my gosh.
NICOLE BETTE: It was very, very difficult to deal with that. I ended up just getting the headphones myself and paying for them out of pocket, which at that time was very, very expensive for me. But I decided that I just needed it to be able to perform at work and focus because I just wasn’t focusing well. And then I did leave eventually. I decided not to do anything about it. I just didn’t feel like it was a safe environment for me.
AMY GALLO: Did anyone mention the headphones when you were wearing them?
NICOLE BETTE: No. No, no.
AMY GALLO: Not even this leader who had been so adamant that it’s not part of the company culture.
NICOLE BETTE: That’s a good way of putting it. But, no. No, they didn’t.
AMY GALLO: Right.
NICOLE BETTE: Yeah.
AMY GALLO: Because it wasn’t a big deal.
NICOLE BETTE: It wasn’t, it wasn’t a big deal.
AMY GALLO: Right.
NICOLE BETTE: And then I asked later on in my career for other accommodations too.
AMY GALLO: At different employers?
NICOLE BETTE: Yeah. I asked for things to be put in writing. So, whenever I would have conversations with managers to, or when there was any… although feedback tends to be documented anyway, but I just mean even informal meetings, just have minutes somewhere and I could contribute to them as well. It could be a collaborative effort of having instructions in writing. That was immensely helpful.
AMY GALLO: Did you have a good response to those requests?
NICOLE BETTE: Yeah, I did. But I will say though, I didn’t always know what to ask for. I was having a hard time, I think, especially during COVID having to switch from working in person to working remotely, it changed the whole structure of everything. I mean, everyone was struggling, but I remember really, really struggling on how to structure my day at work and the autism and ADHD I felt were contributing immensely. And it was a time where I remember that I was asked, so what do you need? They asked me, “So what accommodations can we give you so you can perform your best?” And in that time, I just didn’t have an answer. I didn’t know what would be helpful. So, I ended up having one of my managers that was a sweetheart, and she was an interim manager, she sat with me and over multiple one-on-ones we just started making lists and thinking like engineers, like okay, let’s be more thoughtful about this. Let’s think of you as if you are our client and we have to collaborate on working out what’s best. And it’s actually during those sets of conversations, kind of going back full circle, where I started coming to terms with assistive technologies and thinking about a wheelchair was because of those conversations.
AMY GALLO: Yeah. I love that idea of let’s collaborate on this as a problem to be solved. And also what you’ve just made so clear is that it’s not always apparent to someone what they need. And sometimes they may be struggling to do their job and need a collaborator or a manager or a mentor to sit with them and think, okay, what would make this easier? And it may not always be the right solution, so maybe the noise-canceling headphones don’t work right, or maybe the minutes need to be more detailed, just sort of treating it as an experiment with a goal of solving the problem together. I just love that. That’s such a helpful way to think about it.
NICOLE BETTE: Sometimes, honestly, it’s about more explicit communication and just having more patience and kindness from the other party.
AMY GALLO: Yeah. What’s your experience been with accommodations, Meredith? Asking for them and getting them?
MEREDITH KOCH: When I first got hurt and returned to work, when I was in the field, what’s so hard if you are working somewhere that your company does not own or lease that building, it’s not that they don’t want to provide accommodations, but they physically can’t provide accommodations sometimes for the work environment that you’re in. So, it really is that conversation with a manager of, let’s try different things. So, when I was first in the field, we didn’t document it as accommodations. It was, realistically, what accounts can you go to? The doctor’s offices that require you going up half a flight of stairs is off limits because you can’t carry a 35 pound programmer upstairs. So, we just worked as a district and my manager talked to the different people on the team and said, “Hey, would you be willing to cover that clinic, and then Meredith will cover this clinic for you because she can get into that pushing a cart, or the equipment’s already there that she needs.” We were like, yeah, that’s fine. Let’s mix and match. Not a problem. So, in the field, it was much more just kind of brainstorming or experimenting with how to do things. So, I had a problem when I was in the field of like I needed to carry six boxes, three city blocks, using a wheelchair. How do you do that? Somebody who’s fully able-bodied is able to just hold six boxes and walk down the street. I figured out if I took those reusable shopping bags, I could stuff three per bag. I could knot one through the other bag. And I kid you not, I looked like a dog. I had it in between my teeth so it wouldn’t fall off my lap. And I’m wheeling down the city blocks between the two hospital buildings, and I was carrying product back and forth. And it worked perfectly. So, it was more about adapting versus accommodations at that time. Once I came to my engineering job, I remember asking the talent acquisition person who was negotiating my offer through, and I was like, “Hey, there’s a couple accommodations that I think I’m going to need.” I needed a power assist button to get in from the street into the lobby because the door was very, very heavy. Funny thing is, people have been complaining about how heavy the door was for years, but it took someone having a legal reason to ask for it. What I will say about accommodations though is, one, a lot of people don’t know what they don’t know. Especially in the neurodivergence world, people are either, A, afraid to ask for an accommodation that it will be disclosed and get back to their manager that they have dyslexia or autism or ADHD or whatever it might be. And then they don’t even know what to ask for. They can be like, well, I have a lot of typos in my emails because I’m dyslexic, but they don’t know that there are programs out there that can proofread for you and help with that. And being a hiring manager now, I just want the people on my team and anyone I work with to feel comfortable asking me, “Hey, could I get noise-canceling headphones?” I will point you in the direction of the official policy. With these new hires I’m going to share that policy on day one with them. They should know how to request an accommodation. They should know if they get sick or someone gets sick in their family, what does our leave policy look like?
AMY GALLO: Well, it makes me think you have the experience of requesting accommodation and now you’re a people manager, so you now have a sense of what it’s like to be on the other side of that request. And I wonder if one of the pieces of advice for managers is to familiarize yourself before the request ever comes in of what you would need to do if there was a request for an accommodation so that you are able to guide your employee through the process, give an appropriate response and problem solve with them.
MEREDITH KOCH: Exactly. And it’s one of those things that disability is, it fluctuates. I was having nerve pain, really bad nerve pain flareups, and my legs were going into spasms, and I had to email my manager. It was like 7:30 in the morning because I was supposed to be on the 7:40 train or whatever it was, and be like, “I have to work from home today.” This was before the pandemic. I was like, “I need to work remotely.” And they were like, “That’s fine. Do you want to have a conversation about how we could not make you worried about this in the future?” I was like, “What do you mean?” “Well, why don’t we have a conversation about you working from home one or two days a week or a standing agreement that if you have a flare up, it’s fine.”
AMY GALLO: Nicole, you’ve mentioned to us this similar experience of having to just leave work or stop working because of something going on with your health. Even I think you told our producer, you went to the ER, just had to go straight to the ER once. Did you have a similar reaction? It sounds like, Meredith, you had sort of the ideal reaction from people. Did you have similar reactions from those you work with? I have to say, I rarely have a podcast interview where I so badly wish we had a video because you are so expressive. Your cringe face is the cringey… it could be the model of cringe face. So, you cringed at that. Tell us what-
NICOLE BETTE: I think it’s because I’m Latina, so I’m very expressive. Oh my gosh. Yeah. So, with the posterior orthostatic tachycardia syndrome, the acronym is POTS, P-O-T-S. It can flare up sometimes, especially if I haven’t slept well, or just randomly, or there’s a lot of heat. Or in that case, what was happening is that I was home hunting. I was visiting houses.
AMY GALLO: You were at home hunting. You were home hunting.
NICOLE BETTE: I was house hunting. I was house hunting.
AMY GALLO: House hunting.
NICOLE BETTE: Yes, house hunting with my partner. Yeah, we were looking for houses. So, every now and then, I would have to go into these houses and climb stairs and ladders sometimes. There was one with a ladder that you had to take a ladder to go to the bedroom. It was beautiful, but impractical. This was before I really had accepted my limitations.
AMY GALLO: I can do a ladder.
NICOLE BETTE: Yeah, yeah. It was just brutal on my body. Yeah, no, no. And so, all that physical activity took a toll, and I was in the middle of a very important project with a new client. We were trying to establish ourselves in a specific area, business area that we hadn’t explored before. So, we were very excited about it. The company was very excited about presenting their best image to this new client, and so there’s a lot of pressure on the team to do their best, to be super, super on point. And I was literally falling asleep at meetings because the hypotension, that reduced blood pressure causes sleepiness sometimes, so I was struggling even to stay awake during meetings. And this was not voluntary, it is not something I could control. It was happening. And so, in the morning when I woke up, I stood up and I tested my heart rate, and it was high 140s. If it’s 150 or above, your risk for a supraventricular tachycardia, SVT, you can have a heart attack. You can have a dangerous complication. So, I said, “Okay, I have to go to the ER and I’m leaving.” It’s like I have to leave my team. And so, I sent them a message and I said, “Hey, I’ve been feeling ill for the past days.” So, I just took off and went to the ER because I had to. I had to put my health first no matter what fires were happening at the company.
AMY GALLO: Yeah. And were your colleagues understanding?
NICOLE BETTE: There was a lot of nonverbal communication. I don’t think they were happy. They were concerned.
AMY GALLO: Yeah.
NICOLE BETTE: I think probably concerned about me, making sure that I was okay. But to me, this was nothing new. This has been my reality for all my life, but for them it was like, oh my God, what can we do? And also, I’m assuming that they were concerned about the project a lot. There was definitely tension that I felt, and a lot of it is, unless people explicitly say directly what they mean, it is speculative and it’s based on changes in tone and facial expression. It’s hard to-
AMY GALLO: But no one expressly said, “We’re glad you’re okay. We’ve got this project under control.”
NICOLE BETTE: Yeah. Nobody said, “Oh, don’t worry. Just take care of you. We will handle it.” There was not that. It was more like, oof. But there was also no chastisement. Nobody went out of their way to make me feel like that was inappropriate.
AMY GALLO: But no one went out of their way to make it feel like it was appropriate, it was right choice.
NICOLE BETTE: Exactly.
AMY GALLO: Yeah. There was something you said in telling that story, Nicole, that really stuck with me because you said, “It’s not something I can control.” And I think back to what you were saying earlier of especially with non-apparent disabilities, there is a sense, I think there’s a perception that you’re just not controlling it enough, implying that people are lazy or incompetent. You both are making it so clear to me how damaging that can be.
NICOLE BETTE: If you create an environment where people don’t even feel safe bringing things up or taking time for themselves, if you make a culture of workaholism, you’re inherently going to make people not want to even seek accommodations or disclose, or they’re not going to feel safe coming forward. I mean, someone that you see maybe falling asleep, for example, at their desk, they could have a severe sleep disorder. That is not because they’re lazy or they don’t care about their work. It could be they have something else going on. I mean, it should be addressed. I’m not saying ignore it, but I’m just saying use a little bit of patience.
AMY GALLO: You say, honestly, the thought that comes to mind when I’m like thinking about seeing someone fall asleep, I’m like, oh, they were up playing video games all night or something. You do find yourself making these presumptions about why people are behaving certain ways and the importance of questioning those assumptions. You’re putting such a fine point on that. I think it’s really helpful. All right. Thank you both so much for joining us today. This has been such an enlightening conversation for me, and I’m hoping our listeners learn a lot from it too. So, thank you.
MEREDITH KOCH: Thank you for having us. It’s been a great day.
NICOLE BETTE: Agreed. Thank you so much. Appreciate it.
AMY GALLO: That’s our show. I’m Amy Gallo. Next week we focus on one type of neurodivergence, ADHD.
KATHLEEN NADEAU: A disorder that’s long been underdiagnosed in women and can make work quite difficult. If you are an accomplished woman, there is a huge probability that your clinician will look at you and say, “You can’t have ADHD, you went to Harvard. You can’t have ADHD, you’re a lawyer. You never would’ve gotten through law school.” That’s not true.
AMY GALLO: HBR has more podcasts to help you manage yourself, your team, and your organization. Find them at hbr.org/podcast or search HBR in Apple Podcasts, Spotify, or wherever you listen. Women at Work’s editorial and production team is Amanda Kersey, Maureen Hoch, Tina Tobey-Mack, Rob Eckhardt, Erica Truxler, Ian Fox, and Hannah Bates. Robin Moore composed this theme music. Subscribe to our free newsletter by going to hbr.org/email-newsletters. Every month we send you a mix of resources, practical advice, and personal stories, aimed to lift you up and move you forward.