In this episode of Unstoppable Together, hear from the three co-chairs of Booz Allen's Global Disabilities Business Resource Group about what it means to live with a non-apparent disability. As we recognize National Disability Employment Awareness Month, we wanted to understand why someone might want to hide a disability, why these three co-chairs choose not to, and what they wish others knew about their experiences.
Jennie Brooks:
Welcome to Booz Allen Hamilton's Unstoppable Together podcast, a series of stories that unite us and empower each of us to change the world. I'm Jennie Brooks with Booz Allen Hamilton and I'm passionate about diversity, equity, and inclusion. Please join me in conversation with the diverse group of thought leaders to explore what makes them and all of us unstoppable.
Hello everyone and welcome to the Unstoppable Together podcast. I'm Jennie Brooks, and today we're bringing you the perspectives of three co-chairs of Booz Allen's Global Disabilities Business Resource Group, or BRG. In celebration of National Disability Employment Awareness Month this October, we wanted to share their views on living with a disability that is non-apparent. If you were to meet any of these people in person, you might not be able to tell that they're someone who identifies as having a disability. These are people who could hide their disability and in fact have done so in the past, but now they choose not to. And in this episode we'll find out why. According to the Centers for Disease Control, more than 60 million adults identify as having some kind of disability, and 10% of those are non-apparent disabilities. New research by the strategic Human Resource Management found that nearly 50% of employees with a non-apparent disability, chose not to disclose it at work in order to avoid stigma.
To address that stigma, head-on each of our BRG co-chairs responded to the following three questions for us. First, what does National Disability Employment Awareness Month mean to you? Second, have you ever felt like you've had to hide your disability? And what happens if you don't? Help us understand both of those scenarios? And third, what's something you wish people knew about what it means to live with a non-apparent disability? Each co-chair recorded their responses to these questions and we're sharing them here with you today. In this episode, you'll hear from Cesca Daniels, Jeremy Filko, and Chris Khanoyan.
Cesca Daniels:
Hi, this is Cesca and I'm going to talk about what NDEAM means to me. NDEAM is something that I think is incredibly important because there's a long way to go to de-stigmatize the negative connotations associated with being disabled. I am new to the community. I wasn't properly diagnosed until about eight years ago, and until then I was an ally and I worked in special education with neurodiverse children. I didn't really realize the ramifications of saying out loud, "Hi, my name's Cesca and I'm disabled." It's been very eyeopening for me to experience this community from a firsthand perspective. I can champion the community's efforts, but until you walk at these shoes and you've been able to experience these feelings, it's impossible to express the importance of having disability awareness as part of everyone's learning. We are a firm that believes strongly in enabling and empowering our colleagues who deal with multiple different types of disabilities, and I'm very proud of the fact that I'm on the firm's executive board and that I am able to help push that initiative.
Jeremy Filko:
Hi, this is Jeremy Filko. As someone who became disabled later in life, this most reminds me how much I took for granted before I was injured and really how little appreciation I had for how disabilities impact people in the workplace. I remember several years ago, a colleague of mine was asked to make an electronic fact sheet regarding nail gun safety and it needed to be 508 compliant, to include allowing blind people to understand what the images were. And at the time I remember thinking anybody who can't see, that is using a nail gun, is so dedicated to their craft, I really doubt they're going to read this simple safety fact sheet.
And although there may be some truth to that, what I failed to consider was, what about a blind person who's leading a team of contractors who are framing out a house and using nail guns on a regular basis? Doesn't that team lead deserve to have the information they need to keep their team safe? Doesn't that team deserve to have their lead have access to that information? So yeah, this month helps remind me to keep things in perspective and that I still have a lot to learn.
Chris Khanoyan:
Hello, this is Chris Khanoyan. I'm using a female sign language interpreter. And what the national disability employment means to me, for me personally, I feel this means a lot and also we have a lot of room for improvement to making sure there's equality and equity in the whole workplace with everybody that has a disability. There's a lot of good things happening, but it's never going to be 100% perfect because disability has their own spectrum and not everyone has the exact same disability and has the same exact accommodations request. I joined the disability BRG last April, and I'm thriving to find challenges in finding solutions for this year and next year while I'm on the co-chair.
Cesca Daniels:
Hi, this is Cesca and I'm going to talk about if I've ever felt the need to hide my disability and what happens if I don't and how both scenarios make me feel. I have had to hide my disability my entire life. I don't feel like I was raised in a family that allowed me to have any type of problem, and I hate the fact that I use the word problem, but disability means something negative. As a matter of fact, when I was properly diagnosed, my father looked at me and said, "Really, really? Are we really doing this?" And I thought to myself, what does that mean? What does it mean? Are we really doing this? Because yes, we really are Dad. I have a neurological disease that is progressively degenerative and there's nothing I can do about it other than to deal with the pain every single day.
And I want to focus on the emotional toll that that takes, and I could talk about this for hours and days, but if you can imagine the emotional toll associated with masking and trying to act "normal" in situations where you are not normal. I am in extreme amounts of pain most every single day. There are no drugs for me to take. But the problem is I have to put a smile on my face and go into work and act like nothing's wrong when everything is really chaotic in my body. That's an incredible burden to handle. And I can't imagine having to deal with my other colleagues who I've spoken to about being autistic, and having to mask every single day to "look normal, act normal, be normal." One of the things that we need to do is to realize that everyone is dealing with their own situation and we need to approach each person with kindness.
I try to be empathetic in every situation, and I really hope that everyone takes away from this question that hiding my disability has been mentally exhausting, physically exhausting, and I now feel empowered to just be myself. And that takes a huge toll off of my heart and my burden that I'm carrying.
Jeremy Filko:
This is Jeremy. I have the impacts on my disability every day. For me to really address that question, you're going to need a bigger podcast. I'm constantly masking my disability even around those who know me well. Every day in my personal life and my professional life, there are times when if I don't mask my disability, it's going to be awkward for everybody else, or it's just simply required that things play out a certain way. So that's what I have to do. For example, post-injury, loud spaces that are filled with lots of conversation, especially if there isn't much sound absorption, start causing my head to hurt within a couple of minutes, sometimes within seconds of entering the environment. And the longer I stay in that environment, the worse it gets. Sure I can put in earplugs to try to mitigate the sound a little bit, and I may be physically present, but I really can't participate the way that I'm expected to participate, and how I want to participate.
So there are times when I do the math and it's worth enduring the pain and the migraine that frequently follows, just to be a part of that [inaudible 00:09:01] it's a personal experience or it's a business function, but almost no one of my professional life has seen what can happen. They haven't seen me when I have my arms pulling my head to my chest and I'm trying to tense up so tight just to distract myself from the lightning racing around my head for hours and hours after the event. Nobody really wants to see that, much less know about it, but my family sees it and it affects them too.
Chris Khanoyan:
This is Chris again, thinking about some situations where I had to hide my disability and other situations where I did not hide my disability. I've been thinking about this for a while, and when I was younger, I'm talking about when I was 18, 20 years old, I felt like I needed to hide my deafness and use ASL in the public schools and Corpus Christi, because the kids were not very nice. They were bullies. And I was bullied very often and made fun of based on how I looked while I was signing. And that really had a big influence on my self-esteem for a very long time. And I was asked to repeat eighth grade because the school admin and the principal thought I was not ready for the real world, based on my disability. And unfortunately, I've known a few of my friends who actually had to repeat eighth grade as well. My parents fought that decision with the principal and I did not have to. I went to high school.
But I just started not hiding my disability anymore. And I've been telling people, including our federal government clients, please don't do X and Y to make sure that we have a good working relationship and for me to be successful and we can maximize my work efforts. The work environment has been improving and I just really hope that this will continue for years to come.
Cesca Daniels:
Hi, this is Cesca and I'm going to talk about what it means to live with a non-apparent disability. One of the things I would like folks to take away from this podcast about non-apparent disabilities is that the umbrella term of disability is inclusive of mental health and wellness. That is a huge part of what we work on on the Disabilities Business Resource Group, is de-stigmatizing negative connotations associated with mental health and wellness. One of the non-apparent disabilities that I deal with is anxiety. Non-apparent means it's happening inside and you can't see it from the outside. My mother passed in 2006 and from that moment forward, I have experienced bouts of anxiety and that can be very difficult and debilitating at times. Coming out of a global pandemic, I cannot imagine one person in this world who hasn't experienced some form of a mental health issue, whether that be a PTSD moment from having to be stuck in your home, some type of a depression, some type of anxiety, or at least somebody in your family that you've had to take care of that is experiencing a non-apparent disability.
What I would really like for folks to know is that we need to normalize this conversation. Everyone in some way, shape, or form has experienced or will experience or has been around someone who is experiencing some form of disability. And if we understand one another better and we lead with kindness and empathy, we will be in a much better place.
Jeremy Filko:
This is Jeremy. Something I wish people knew about what it's like to live with a non-apparent disability and specifically with a traumatic brain injury, is doubt. I have put myself through more self-doubt over the seven years that I've been dealing with my injury than everybody else combined. It is constant. What if I worked harder? What if I try harder? Can't I just gut through this? And it took me five years to really come to the conclusion that this is simply how it is. This is real. I was really fortunate that my TBI was accompanied by extensive physical damage. It gave me something to anchor to. My nose was broken in several paces and pushed onto the wrong side of my face. My left eye socket is titanium now. If you wonder what that looks like, think about Rocky after going 15 rounds with Apollo Creed, and many of my seniors and my colleagues, they saw the extent of my injuries.
So I was lucky to have that physical anchor, something I could say, this really did happen to me. And that made a big difference. So my advice to people out there that are working with somebody or somebody in your personal life that has a non-apparent disability, is simply to trust them and believe them. The benefits to you, your company, the people around you, to believe a disabled individual who has opened up and made themselves vulnerable to tell you about what they're dealing with and how it's impacting their lives and maybe your work, far outweighs any perceived benefit that you will gain from doubting them. And if you want to know what might be in it for you, in my professional life, I've become fiercely loyal and committed to those who believe in what I say and trust that it's real.
Chris Khanoyan:
This is Chris. For the non-visual disabilities, some people have no idea that you have a disability until like for myself, I start signing. Then people realize I have a disability. Everyone has their own experience and no experience is going to be the same. And that is true for visible disabilities and non-visible disabilities. Everyone grew up differently. Everyone has different needs, different accommodations. Everyone has their own stories, which means if you ask for accommodations, it does not mean that accommodation is going to be true for every person that has the same disability. Some people that has a hearing loss later in life, they might have different needs than I would have. I, being deaf since I was born have different needs. For example, I need a sign language interpreter, while somebody that has lost hearing later in life might be interested in learning sign language, but they might need a hearing device because they would need that accommodation to continue to hear.
The point is everyone has a different story, and that is why we're hosting our panel on October 23rd at the Helix Center in Washington DC. And the topic is, we will not hide. Myself will be the moderator for the panel, and my panelists will tell their own stories. And my panelists have a range of disabilities from mental health to the deaf and hard of hearing, and also permanent disabilities, which they need wheelchairs for mobility. They will be able to tell their stories and how they're dealing with these situations as they come up in life, to handle non-visual and visual disabilities. So please come and listen to my panel virtually or in person. Thank you very much.
Jennie Brooks:
Thank you again to the co-chairs of Booz Allen's Disabilities BRG, for sharing their stories and helping us raise awareness about what it's like to live with a non-apparent disability and also National Disability Employment Awareness month. We hope you'll join us for the next episode of Unstoppable Together. Thanks for listening. Visit careers.boozallen.com to learn how you can be unstoppable with Booz Allen. Be the future. Work with us. The world can't wait.
Â