This segment highlights strategies for managing workplace fatigue, navigating the accommodation request process, and using self-advocacy scripts to establish a sustainable work environment.
Transcript
Welcome everyone to Rarely Speaking SMA Beyond the Clinic. I am Kevin Schaefer from Bio News and SMA News Today and I’ve been living with SMA my whole life.
Introduction
Kevin Schaefer: So when I say I get it, I really mean it. Today we’re going to be diving into parts of life with SMA that don’t usually make it into clinical appointments—things like navigating work, dating, and travel. And with me today are community members who agreed to get real about their experiences alongside our expert clinical and caregiving perspective, Dr. Al Friedman. And so I want to take a minute to introduce our panelists.
First we have Mindy Henderson. Mindy, could you introduce yourself to everyone here?
Mindy Henderson: Yeah, thank you. I’m Mindy Henderson. I work for the Muscular Dystrophy Association. I’m editor-in-chief of Quest Media and also their vice president of disability outreach and empowerment. I live in Austin, Texas where it is crazy hot. Um, and am excited. I live with SMA type 2, was diagnosed at 15 months. Um, and really happy to be here.
Kevin Schaefer: Fantastic. Thank you so much, Mindy. And then Meyn Chavez. Meyn, how are you today?
Meyn Chavez: I’m doing great. Thank you uh for introducing me. Uh my name is Meyn. I’m 31 years old. I live in Miami, Florida. I have SMA type 2 and I co-host a podcast about disability with my best friend called Access Granted and I also work with uh different advocacy efforts particularly Cure SMA. I’m a chapter leader for them and I do many many many other projects uh as well. So I’m so happy to be here. I’m looking forward to talking to you guys.
Kevin Schaefer: Thank you so much Meyn and I highly recommend everyone check out uh Access Granted. It’s a great podcast. So and then last but not least, Dr. Al, how are you today?
Dr. Al Friedman: I am well Kevin. Thank you so much for having me. Thank you for including me on the panel today. My name is Al Friedman. I live in Chicago, but today I’m coming to you live from picturesque Sedona, Arizona. I am a psychologist and I specialize in supporting the needs of individuals and families affected by rare disease all over the world. Um, I’m also a dad and it’s very special to be part of this presentation as my son Jack lived to the age of 26 with SMA. So I’ve uh lived this journey as a caregiver for many many years and I have great respect for the community and all the challenges everyone here faces and thank you Kevin for having me today.
Kevin Schaefer: Absolutely. Thank you all for joining us. I’m really excited for this session and I thank you to everyone joining today. And before we jump in a quick housekeeping note at the end of today’s session we will be sharing a short community survey. So stick around for that.
And let’s uh get started. So um you can see some of the stats here, but we are grounding today’s conversation in actual community data that we took and ahead of this webinar we ran 13 polls on social media and one result stopped us in our tracks. Um so every single person who answered told us that they felt underestimated.
Um uh 100% has felt underestimated because of SMA. That’s not a side finding. It’s the thread running through everything we’re talking about today. People with SMA are capable, driven, and resourceful, but the world doesn’t always build space for that. So, we want to talk about how we navigate um through life with SMA and through these different topics.
Employment & Energy Management
Kevin Schaefer: So getting into uh our first topic, we’re going to start with talking about employment because career management is often where the invisible energy costs of SMA meet daily performance expectations. So in our poll, two-thirds of the community named fatigue and energy management as their single biggest workplace challenge, far ahead of physical accessibility.
So panelists, let’s talk first about what managing your energy across a standard workday actually looks like for you. Mindy, I want to start with you. Can you talk about how you manage a typical workday um and your energy uh levels while navigating SMA?
Mindy Henderson: Yeah, thank you, Kevin. I um I’ve been in the workforce now for I’m going to date myself a little bit about 30 or 30-ish years probably. And um and so um I’ve I’ve learned a lot over the course of that time. And I will say that early on in my career, I was like the hamster running on the wheel all the time. And I really um struggled with my energy and my fatigue, but at the same time, you know, I felt I felt like I had to keep up. And um and I I felt like those those comparisons between me and my between me and my colleagues were always something that was just sort of looming that I worried about constantly. And so I tried really hard to produce volumes of work.
And I think what I’ve learned over the years is that energy is kind of a game of Tetris. And I’ve learned to um I’ve I’ve learned that conserving my energy isn’t about lowering the bar. It’s about protecting the energy that I need to be able to perform at the level that I want to. And so what goes into that is a lot of prioritization and figuring out um where I can spend my energy, where I can add the most value. Um basically, and that’s really the lens that I try to look at each day through.
You know, inevitably some days are busier than others. Um, and you know, you can’t always help that, but I try to approach my work life with as much intention as I can about um, you know, what I want to have accomplished at the end of the day, at the end of the week, you know, whatever um, the case may be. And then I try to structure my work days to tackle the most important components um and the highest impact activities um to to get um to to accomplish what I what I need to accomplish and make my employers happy.
Kevin Schaefer: I love it. Mindy, thanks so much for sharing. And you know, I know you have the perspective working a 9 to 5 and uh and so it’s important to have that perspective because I think uh in our community people have different approaches to work. Some have 9 to 5 jobs, some do freelance work and um so I really thank you for your perspective.
And Meyn, I know you do kind of like different jobs and you do freelance work and so your days might look different for one. Um so can you talk about managing that? I think yours in your case it not only applies to um a typical workday but kind of like throughout the week and spreading out your energy. So can you talk about navigating that?
Meyn Chavez: Sure. Um so for me I think the most effective uh way of navigating my fatigue and energy levels is just kind of planning out the whole week and looking at everything from Sunday—which caregiver is coming what day, what time, you know, what appointments do I have, and what work do I need to complete before x amount of time?
And I I think that as people with SMA, it can get so tricky and it’s so layered and complex because like I said, you have to consider caregivers, uh your own spoon levels, um do you have an appointment that week? Do you have to see a doctor? Do you have to do labs? And and kind of work around all of these things so you can complete your tasks the most effectively.
Um, and that could be daunting and that could be tiresome. Um, but it’s really important just to like give yourself room to rest first and foremost. And then secondly, um, do things in a time frame that is comfortable for you and effective um towards your needs. And I always like remind people, hey, you know, don’t push yourself too much cuz if we push ourselves too much, then we burn out and then we’re not creating. We’re not doing what we love, right? So, it’s important to just factor in everything. See what you got to do and make sure you include time for rest as well. That’s always really, really important because without rest there, it’s not happening. It’s not going to happen.
So that’s what I like to focus on when I’m figuring out my content creation, my podcast work or my freelancing for any kind of project that I’m working on. Just what day can I focus on this and uh how much work can I put into it and maybe even how many days it’s going to take me I think is also a valid question. Um so yeah that’s what I feel is important.
Workplace Accommodations
Kevin Schaefer: Thank you so much both of you and Meyn, I I love what you said there. I think rest and um flexibility are really essential. And uh thinking about this topic as well, another big component is asking for help at work. And um when it comes to asking for help at work, our data showed us that accommodations aren’t a simple success story. Of those who asked for workplace accommodations, only 29% said it went smoothly outright and another 29% got mixed results and 43% have not asked yet. So this shows us that getting support isn’t just about having the courage to ask. The process itself often breaks down.
And so I I want to turn it back to you and then Dr. Al will get to you in just a little bit. But um Mindy, we’ll we’ll come back to you. What has your experience been with asking for workplace accommodations?
Mindy Henderson: Yeah, I really love this question and it’s something that again I think has really evolved and transformed in my mind um as I’ve progressed through my career and I fell into that bucket early on that I I never asked for an accommodation because of the comparison game I was playing in my in my mind and I didn’t want to ask for anything that might make me might be perceived as, you know, me being less capable or or anything like that. I was really terrified of um the the judgment that might go along with asking for an accommodation.
And I heard somebody talk a few years back about looking at accessibility or accommodations, sort of changing the um the the labels and instead of talking about them in terms of accommodations, looking at them as success enablers. And when you look at them through that lens, you can have a conversation, I’ve found, with your employer that is more focused on outcomes and success than the actual accommodation itself, which you know, the the accommodation is um it’s it’s tactical. It’s a little it’s it can be a check box that you need to tick in order to be able to do your job as it as successfully as possible. And that’s the way that I really like to frame the conversations now that I have with people.
Um I I don’t think accommodations are a reduction in expectations necessarily. It’s often times just it’s the infrastructure that allows someone to meet those expectations. And so I I think that’s been a paradigm shift in my mind that’s been really constructive in my own life and how I have those conversations. And if I talk about it in terms of, you know, my my goals and my um my workload and the things that I need to accomplish in my job and you know, this just happens to be the things that I need to do to get these things done. Um it’s a very different conversation. Um is is kind of been my experience.
Kevin Schaefer: Thank you so much for sharing. And Meyn, is there anything you want to add to about ask your experience with asking for workplace accommodations?
Meyn Chavez: Uh, I think I would like to add that communication is really important and if something isn’t working out for you or there’s some way that it could be more comfortable for you, speak up. Say so. You have no idea what resources are at your disposal unless you communicate what your needs are. And a lot of times I’ve felt even with working with big companies like if something is too taxing for me or I can’t fill out a form because whatever you know anything anything just ask and more than likely your employer will be willing to accommodate you to the best of their abilities. So always speak up for yourself cuz it’s important and if it’s something that you are wanting to do and wanting to complete then you deserve to be as comfortable as possible. So just ask. It doesn’t hurt. The worst that they can say is no.
Kevin Schaefer: Absolutely. No, I think you’re spot on there. And Dr. Al, from your clinical and advocacy perspective, why do you think there’s such a gap between an individual recognizing an accommodation need and an employer actually executing it effectively?
Dr. Al Friedman: Well, thanks Kevin. I first just want to acknowledge Mindy and Meyn’s comments. Um, communication is so important and I love the phrase success enablers and uh, you both brought me back to my son’s two part-time jobs over the years and the challenges that he faced in terms of uh, his physical fatigue and the need uh, for his employers to be to be flexible. So, thank you for all of that.
Um, in response to your question, Kevin, there are really uh two two challenges, two types of challenges. Um, when it comes to workplace accommodations, the the first is on the individual side. It’s important that individuals with SMA frame the accommodations requests with specificity. Um, because if you come in with something too vague, the employer doesn’t know how to respond to it with specificity. So saying I have SMA and I get tired is very different from saying I need a 20 minute break after back-to-back meetings because my respiratory and muscular fatigue compounds uh across the day and here’s what that looks like and feels like. So specificity matters a lot. The more concrete you are about the functional impact, the harder it is for an employer to offer a more generic workaround that may or may not suit your needs.
Um, which follow which leads to the second reason for the challenges and the second gap on the employer side. Folks in human resources often don’t know what SMA is, and even well-meaning managers will can default to what’s easiest to grant, not necessarily what’s most effective. So, the accommodation that gets approved isn’t always the one that you actually need. Um what I advise my clients to do is to come in with a specific uh written request and describing the functional impact rather than the diagnosis and propose the specific solution that you want rather than leaving the solution finding to a person who doesn’t live in your body. Uh specificity is everything and um open communication to let your employer know what you need really matters.
Kevin Schaefer: I love that. Thank you so much, Dr. Al. I love all your perspectives here. I think this is really great. And um just to give everyone watching, listening today some actionable tools, uh we’ve put together a few workplace advocacy scripts based on what’s worked for our community. So, these are just some examples of things you might want to use.
Starting the conversation: “I want to talk through a physical barrier affecting my workday and a few adjustments that will help me perform consistently.”
Reframing energy needs: “Fatigue management is part of my SMA. The goal isn’t less responsibility. It’s a setup that lets me meet performance targets sustainably.”
Documenting requests: “Thank you for meeting today. I’m following up in writing to summarize our accommodation plan and next steps so that we have a clear record.”
Escalating when needed: “If we can’t resolve this barrier directly, I’d like to involve HR so we can identify an appropriate accommodation.”
So all this to say we’re relating to workplace workplace accommodations managing energy and advocating for accommodations are not soft skills they are medical necessities and you deserve a workplace that respects them as such. So guys, thank you all for um sharing your perspectives on this subject.