Fostering inclusion for persons with invisible disabilities

Inclusivity Included: Powerful personal stories

Invisible disabilities can affect a person’s efforts to work, go to school, socialize, and more. Although invisible disabilities create challenges for those who have them, it can be difficult for organizations and others to recognize or acknowledge the reality of the disability.

In this episode, Reed Smith partner Luke Debevec, who practices law with epilepsy, joins John Iino as co-host. Their special guest is Catherine Ames, a student at USC living with chronic illness and disability. Catherine has made it her mission to help other students and young people similar to her to feel less alone. She does this through “Chronically Catherine,” her column in the USC newspaper, the Daily Trojan, and as a USC Fellow conducting original research on the history of disability discrimination.

Luke and Catherine share their personal stories and the challenges they face with their disabilities and provide advice on how organizations and others can better support persons with invisible disabilities.

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Transcript:

Intro: Hi, I'm John Iino and I'm Iveliz Crespo. Welcome to the Reed Smith podcast, Inclusivity Included: Powerful Personal Stories. In each episode of this podcast, our guests will share their personal stories, passions and challenges, past and present, all with the goal of bringing people together and learning more about others. You might be surprised by what we all have in common, inclusivity included.

John: Hey, everyone. Welcome back to the podcast. We have a great topic to discuss today. That's something I think it is very important for people to, to focus on and hopefully illuminating for the audience. That is focusing on inclusions for persons with disabilities. And today, I'm really fortunate to have as my co-host, one of our partners, Luke DeBevec, who is a partner in our Philadelphia office. He focuses on insurance recovery claims against the insurance companies. And Luke is also one of the founders of what we call LEADRS, which is our inclusion group for persons with disabilities. Hey, Luke, welcome to the podcast.

Luke: Thanks John, great to be here.

John: And as our special guest today, I am really thrilled to welcome Catherine Ames. Catherine is a student at the USC and she majors in law, history and culture with a minor in theater. But more than anything, she's just a advocate for patients and she's a researcher, writer and speaker. As a matter of fact, um I met Catherine at USC because we were at the event for Town and Gown where Catherine was the featured student speaker. And she was just such, such a powerful speaker on a topic that's so important with such a strong message that I thought it would be so great to bring her into our podcast. Just really briefly, Catherine is a chronically ill and disabled student and she's really made it her mission to make other students and young people like her feel less alone. Um She does that at USC through her column, The Daily Trojan, which is the student newspaper and her column is called Chronically Catherine. We want to hear more about that, Catherine and she's also a USC Vice Provost undergraduate fellow, conducting research on the history of disability discrimination at the university and research which she just presented at the American Society for Legal History Conference. So welcome, Catherine. It's great to have you. Great to see you again.

Catherine: Thank you so much for having me. I'm excited to be here.

John: So let's start off Catherine if, if I can just focus a little bit on your personal story, you know, the title of our podcast is Powerful Personal Stories. Um share with us a little bit. Your, your story and how you became such a passionate advocate for patients and persons with invisible disabilities.

Catherine: Yeah. So my health fell apart when I was in the middle of my college experience, I was abroad in New Zealand studying for a semester and I started to get all these crazy, weird symptoms. And, uh, I was 21 at the time, so I hadn't lived, uh, a day in my life really as a disabled or chronically ill person up until that point and within about a month of being forced to leave my semester abroad because of my health, I acquired 6 to 8 specialists and they pretty quickly diagnosed me with a host of chronic health conditions, all of which they said were incurable, going to affect my life long term and would probably take many years to get under control as well as they were unsure if I'd be able to return to college. So, as you can imagine, this was not only shocking in terms of how I had conceptualized my life and the things that I wanted to do, but all of a sudden my body had all these new limits. It was like I was living in different skin, I couldn't shower without a chair. I needed help getting up the stairs. I was, I think I had eight hospital visits in the span of 2.5 years, 12, ER visits, something like that. And it was an extreme adjustment for my family and I wasn't sure if I'd ever be able to return to college.

Well, flash forward. I ended up becoming a patient at Keck Medicine of USC and my rheumatologist on my, one of my first visits said, well, I'm gonna get you back to college and, you know, wouldn't it be so much easier if you were a student at USC? because then you could walk across the street from your dorm and see me at student health. And I thought, yeah, fat chance, like I'd ever get in, I don't even know if I'm going to be able to do well enough to return to college. And on the day of my last hospitalization, which I had three back to back that year, I got my acceptance to USC and I think that was really the turning point for me because all of a sudden I saw a future for myself and I saw a future wherein I could hopefully affect change for young people like me because I looked around and didn't see a whole lot of people vocal about the young disabled invisible chronic illness experience. And when I got to USC - we were online at the time actually - so I thought might as well put some bait in the water and write a column about my lived experience now as a student and let them come to me. So I popped a little email at the bottom of my column. And soon enough people messages started flooding in from students staff even and other people like I, I ended up getting an interview on KNBC LA because of my COVID experience. And all of a sudden people were saying, oh my gosh, this is incredible. This is the first time I've ever read something like this in The Daily Trojan. This experience is so invisible on campus and not talked about.

So my passion for advocacy kind of launched from a selfish place. I wanted to meet people going through something similar to what I was going through. And uh it really launched from there and opened a lot of doors uh for me in terms of my career path, but also just feeling like I had purpose now. I hope I answered your question.

John: It was so powerful, Catherine. It's just so inspiring for so many people. And one thing that I take away is that, um you know, you were unsure whether you're able to return to college and there was someone that believed in you. Your, your doctor said, hey, you know, I'm treating you here at Keck Medicine. Why don't you come to USC and, and now look at what you're doing. You know, um overcoming your, you know, so, so so much and inspiring so many other people. So just, just fantastic. Luke. I want to turn to you. I know you're our co-host but also share with our audience, your personal story. I know you've, you've had your own battles and you also talk, talk a little bit about the importance of LEADRS, which is our group that supports persons with disabilities.

Luke: Sure. Well, LEADRS stands for looking for excellence and advancement of people with disability um at Reed Smith and it's just been an extremely important part of my life for the past 10 years. Uh It's our business inclusion group for people with disabilities. I got into that group specifically because at around the same time in the middle of my career, I just started having seizures for no really good reason. And my career path was kind of hard to discern at that point because a lot of the things I was doing suddenly I was seizing and unavailable in the middle of a task. And it, it became very difficult for me to, to really just envision how I, how I was going to continue what I was doing, which was a lot of the typical lawyer, things like taking depositions and meeting with clients and writing things that are due on deadlines. And so I, I met with some, some people who now, you know, have become very long time friends and we started this group LEADRS and I found a support network there. Uh And I also found support from within the law firm itself and through the leadership and the group has just expanded year after year. It, it includes people of all types of disability; physical, mental, visible, invisible. And, you know, it's, it's now expanded to include a mental health group.

We include all attorneys and staff and it's gone global at this point, you know, and like I said, it, I guess I'm a similar story to Catherine's and that I was, I was kind of led into the advocacy space as well a lot as a result of my personal experience. But it's been invaluable to me and I'm and I know others, you know, as the years have gone by.

John: No, absolutely. And congratulations, Luke. I know we're celebrating, we just celebrated the 10 year anniversary of the group and at the time, it was formed, it was probably pioneering and hopefully it's serving as a model for other organizations to uh to form similar groups to, to support their employees and raise awareness and, and so much more.

Luke: I certainly hope so. I'm, I'm, I'm very proud of what we've done and I'm glad to see others in the profession and outside the profession, you know, getting involved in disability inclusion work. I think it's important. So, Catherine, what challenges have you faced given your disability and how have you overcome those challenges?

Catherine: I think what I mostly expected becoming disabled, the challenges that I would face would be mostly physical and in fact, they've been mostly emotional. Coming to terms with not being able to do a lot of the things that I used to be able to do, you know, rehearse for being lead in a production, a musical production for eight hours a day, go for runs, really do anything that I felt like doing without consequence. Suddenly there was consequence to everything that I did. And while I was able to adjust physically, to plan to accommodate the consequence that I have, if I do over exert the most, the biggest challenge that I've faced is accepting that mentally. And also, you know, the mental aspect of not being believed by doctors not feeling like I'm allowed to call myself disabled because I don't have a limb difference or because I'm not a wheelchair user or because I'm not deaf or blind, also getting really depressed and really depressed that I can't participate in my activities that I love in the same way that I could before, but also constantly anxious that I'm going to have a flair that I'm going to feel faint, that I'm going to be out in public doing something fun with friends and be that one person who needs to leave early.

Those were very real anxieties that I had both physical, social, familial, feeling like a burden to my family all of a sudden that felt the least talked about and felt like I had the least resources to navigate and the least amount of skill set to navigate those complex mental challenges. In terms of overcoming them, therapy has been incredible. Uh I go to talk therapy every other week. It used to be once a week and conceptualizing my illness within the frame of my life path and re-conceptualizing my life path has taken help. I have needed to learn to ask for help way more than I used to and way more than I used to be comfortable asking for help. I used to be someone who is incredibly independent. I didn't like asking for help because I felt I could do it better on my own and giving in to my body, respecting my body's limits has been the hardest challenge yet. Um Adapting to a totally new way of being has been the hardest challenge yet. But it's also forced- I don't think I would have slowed down in life if I wasn't physically forced to. And so overcoming those challenges has been somewhat of a blessing in disguise.

I mean, I don't necessarily agree with the sentiment that I'm thankful for my disability, that I'm thankful that I'm constantly sick or that I feel gratitude that my life is so much better because I constantly have to fight my body. But there is a certain level of curiosity about how my life is different and in some aspects deeper, more meaningful because of my disability and latching on to that has been a huge part of how I've overcome some of these mental challenges.

Luke: I, I guess I'll respond to that Catherine by just saying, I share a lot of that, that th those specific experiences of, of needing to learn how to ask for help. Um and rely on others where before that was not a part of my normal skill set and what I did best and a lot of what I had to do is figure out what I do the best now.

Catherine: Yeah.

Luke: those things and then build teams and rely on others to fill out everything else that needs to be done, to get anything done.

Catherine: Yeah, it's scary putting your trust in so many other people just so that you can do sometimes basic things. Like for me, shower or you know, now I need a scooter to get to class. Whereas before I could walk like it's if there's a, there's a web of people and things and accommodations that if one falls apart, the anxiety comes from, if that one thing falls apart, then the rest of the web collapses. But I found that becoming a person with disability is the greatest lesson in adaptation. And you really learn how to become a shapeshifter to any situation, to any crisis. And that's not only incredibly valuable personally, but I'm sure as you know, Luke, you and John both understand and share in an admission of your work that's incredibly valuable in the workplace too. Um And people with disabilities bring a unique perspective and a unique skill set that, that level and degree and intensity of constant adaptation brings.

Luke: Yeah, there's no doubt about that. Thanks so much.

John: So, Catherine, you know, you say shifting to the workplace or in the context of being in school, the demands of being a student. And um you know, you're looking to establish a career. We didn't talk about what you're looking to do after you graduate. But you know, matching that, like you say you wellness, well-being, mentally healthy, you mentioned therapy, being, being, being something certainly. And and I I'm guessing also your column probably is, is therapeutic. But how do you really balance all those demands and in keeping on your goals of where you want to be?

Catherine: Sure. I think simple stuff like learning how to say no, setting boundaries, letting go of things that are out of your control, welcoming what the day has to offer; even if what the day has to offer is a flare in pain, is difficulty with mobility. But on a more practical level, with the demands of being a student, learning to navigate the accommodation system in your college has been a huge learning curve that I didn't even know existed. For me taking accommodations in the first place was another mental hurdle I had to overcome because like Luke said, taking that extra help, I I sometimes felt guilty for it or like do I really need this? Could I really push through and pretend that this wouldn't make my life easier or feeling less than, because I needed extra help or not as smart or capable as other students because taking time for extra tests made me feel as if I couldn't do it in as, as quickly as an able bodied person might.

So aside from the practical accommodations that uh your university can afford, actually going out and accessing them can sometimes be really intimidating. And it was for me. Luckily I've had a lot of support with my accommodations manager at USC and I've gotten quite close to her and we're kind of friends now we have a, a friendly relationship. But in addition to that staying plugged into the things that just bring me joy has helped me balance being a student with my well being for me that's singing and theater and moving my body in some way, you know, it doesn't have to be CrossFit. It could just be like a 30 minute walk in the neighborhood, staying plugged into nature and changing my expectations for the capacity at which I'm able to engage in those things and not and not being so hard on myself if I can't do it at the capacity that I used to.

And the last thing I guess, you know, we're talking about sort of life skills here is being a passionate advocate like Luke said, kind of comes from necessity and it comes from being a pawn in the health care system and having to incessantly advocate for yourself within it. And that that sense of advocacy then ultimately it bleeds out into the rest of your life. And, you know, you suddenly find yourself fighting for what's right and what are your rights and, you know, and, and becoming familiar with the ADA or becoming familiar with your school's policies or giving advice to friends who don't feel capable enough to advocate for themselves and offering them language and like suddenly, like advocacy becomes a second language to you. And for me that's really helped navigating conversations with professors, conversations with family and friends, conversations with peers, setting boundaries. Like I can't do an 8pm meeting that goes until midnight, that just doesn't work for my body. I used to be uncomfortable about saying that kind of stuff, but now I'm really just unabashedly like this is, these are my limits. This is what I can work with inside of. Um I'm a valuable member but not being afraid to, to advocate for myself in all those different capacities.

John: That's amazing and, and so insightful, not only for persons with invisible disabilities, which is to me, what resonated was that all the advice you gave applies to all of us and we all can take, take heed of that advice, learning to say no setting boundaries, um knowing what's out of your control and, and, and you know, seeking things of joy. So it's just so, so great and, and at the same time, you know, knowing your rights, uh knowing when to speak up. Um we, we in the DEI space talk about that a lot, know, you know, know your rights training and, and, and, and for people to know how to speak up and seek accommodations, whatever they may be. So that just this fantastic. Luke, you wanted to talk a little bit about how you're managing the pressures of being a partner in a major law firm and that balance that you've been able to strike.

Luke: So that's a day to day struggle and it, it's constant. The two seizure triggers that my epileptologists have been able to determine are alcohol and stress and I can eliminate one of those things and one I can’t. So I, I really just have to do my best whenever I'm doing work and figuring out how I'm going to do work and the list of things that I do, you know, we've just enumerated them twice now. So I'll spare everyone the third time I need to know. Well, maybe I won't spare you the third time. I need to know when, when I need to draw my teams, I need to figure out what I can do and what I can't do, rely on others to do the things that I can't do, you know, know when to say no and just draw reasonable boundaries around, you know, what, what's possible, you know, in a healthy life to achieve and to do. Uh, so that, that's really how I do it. It's, it's, I, I try to create a balance, balance is almost impossible in a big law firm. But I feel like, uh for the past, I don't know how long time, but I, I found some degree of balance and figured out a way to, to continue working while, you know, maintaining some level of sanity, you know, and continuing to do great work. A lot of that comes from the support in the firm, outside the firm, at home, therapists, scientists, and doctors, it's a constant project.

So Catherine, uh moving along to our next topic, what, what advice would you give to organizations to be more inclusive uh for people with invisible disabilities?

Catherine: That's a big question because I would say my organization right now is my university and to put things in context, supporting people with disabilities at universities, which is history and work that I I do in my research is only recently really getting the resources that it needs in order to really support students with disabilities and the ways that will help them be at the same starting line as their able bodied peers. And in the university setting, I have- it's frustrating to oftentimes see money being spent what seems in an extravagant way on things that don't necessarily help this subset of population of students. I speak with students all the time. About how they really just need more support from the Office of Student Accessibility Services in terms of staffing, in terms of difficulty getting meetings, in terms of training professors to be more understanding of students with invisible disabilities and their needs in the classrooms or to just flat out accept that they have accommodations and to not create barriers to those students accessing those accommodations.

So sometimes it's a bit of like a confusing spot you're in as a student with an invisible disability because people look at you and they have no idea that you are in chronic pain or they have no idea that you just did an eight hour infusion. You don't know what you don't see or you don't know what you don't know. So my advice to organizations in general would be sometimes practical things like make classes zoom optional. Ensure there are chairs for in-person meetings if people need to sit down, create spaces at work, like sensory rooms for people with invisible disabilities, adjust working hours because sometimes I may be in extreme pain when I wake up and I can really only start work at 10, 11 a.m. Give people good chairs, minimize overhead lighting and give people more natural lighting and or office lamps, respect people's need for breaks or need to just have a camera off during the meeting. I know one of my biggest fear as I had into the professional space is kind of being like quote unquote outed before I'm ready to disclose my disability if I ever even choose to. And so these are just small things that any organization can do to just make physical spaces more comfortable for students, but also uh students and in the professional workspace. But also just things like basic respect, like trust your employees and treat them like adults. If your employee with an invisible disability meets deadlines, but works abnormal hours that works better for their health, make that something that they can continue to do.

I'll pause there and I'll toss it to you, Luke, because this is definitely something I feel like I go on and on about.

Luke: I guess I, I would just reflect that from, you know, an organizational standpoint. I, I think most business organizations have more people with disabilities and people with invisible disabilities in particular than they have any knowledge of. And one of the things that they could do to make themselves a more welcoming workplace, both for the people that are already there. Their current employees and prospective employees is, um, show support from the top of the organization and the way, the way that can be done probably as a very first step, you know, is to and it's something that we did at Reed Smith. It was something we call the I Count initiative and it was simply blasting out to all of the employees, their personnel forms where they can self identify and disclose protected characteristics including disability status.

Catherine: That's awesome.

Luke: And when they do that, they are immediately provided a link to, you know, HR and accommodations. Um and the, the the message being, you know, that don't be afraid to disclose an invisible disability, you know, and then leadership from the top and it can come in other ways too, you know, such as encouraging the formation of the types of affinity groups that we've talked about here. There's a lot to be done, but you know, a few discrete steps is a great way to start. I want to make sure that uh all of our listeners are aware that they can listen to our Disability Inclusion Summit and view that it was held on December 1st 2022 and included a lot of members of our firm and guests talking about the issues of disability, take a look at our social media and feel free to view that at your, at your leisure.

Catherine: Well, Luke, it was so great to talk with you and thank you for sharing your story and sharing your experience. And I certainly learned a lot about how potentially welcoming the professional space is to persons with invisible disabilities because it certainly felt like an uphill battle up until this point. Thank you for giving, offering that hope and um thank you for the work that you and John do to make Reed Smith an inclusive space as much as possible for people with all different disabilities. So I'm so so happy to be here and also thank you to John for inviting me. It's been lovely to talk with both of you.

Luke: Thanks so much, Catherine. It's just been a true honor to get to learn more about you and your experiences. It's always fantastic to hear about students who are interested in, in making the world a better place and I wish you all of the best.

Catherine: You too.

John: Just fantastic. Thank you, Luke. Thank you, Catherine for all your insights, just so inspiring and, and I hope our, our listeners will, will, will take to heart uh everything you you recommended to our listeners, feel free to reach out to Luke and Catherine. Uh We'll have their links you can see in the, in the episode notes, the links to social media in both cases, just powerful speakers. And I hope that you can bring their messages to your organizations and to your groups. So thanks everyone and we'll see you on our next episode.

Outro: Inclusivity included is a Reed Smith production. Our producer is Ali McCardell. This podcast is available on Apple podcasts, Spotify, Google Play, Stitcher, PodBean and reedsmith.com.

Disclaimer: This podcast is provided for educational purposes. It does not constitute legal advice, and is not intended to establish an attorney-client relationship, nor is it intended to suggest or establish standards of care applicable to particular lawyers in any given situation. Prior results do not guarantee a similar outcome. Any views, opinions or comments made by any external guest speaker are not to be attributed to Reed Smith LLP or its individual lawyers.

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