In Episode 100 (recorded live), Melinda is joined by an incredible panel of disability advocates and experts to discuss how individuals and employee resource groups (ERGs) can drive important conversations and actions that create true disability inclusion in the workplace. Catarina Rivera and John Marble share how managers can build inclusive team environments by embracing accessible design for all and being proactive in providing accommodations at work. They also discuss the importance of supporting self-advocacy, normalizing disability, addressing intersectionality, and centering people with disabilities when working towards belonging.
- Learn more about the U.S. Equal Employment Opportunity Commission (EEOC)
- Learn more about the Job Accommodation Network (JAN)
- Learn more about the Disability Rights New York (DRNY)
- Learn more about the Disability Rights California (DRC)
- Watch the documentary, “Crip Camp: A Disability Revolution”
- Watch or listen to EP98: “How To Create Disability Inclusion, Accessibility, & Equity Through Policy With Dr. Victor Pineda”
- Watch or listen to EP93: “Addressing Disability & Intersectionality Across Global Teams”
- Watch or listen to EP92: “The Impact Of Surveillance Tech On Marginalized Populations With Lydia X. Z. Brown”
- Watch or listen to EP74: “The Power Of Neurodiversity In The Workplace With Tim Goldstein”
- Watch or listen to EP59: “Demystifying Disability With Emily Ladau”
- Watch or listen to EP56: “Mental Health & The Icon Ride Across The Country”
- Watch or listen to EP27: “How To Make Disability Accommodation And Inclusion The New Working Norm With Commissioner Victor Calise”
- Watch or listen to EP23: “Opening Doors For The Disabled Community With KR Liu”
- Watch or listen to EP5: “Advocating For People With Disabilities with Tiffany Yu”
- Watch or listen to EP2: “Addressing Mental Health During COVID-19 with Dr. Jessi Gold and Dr. Ayana Jordan”
Learn more about Catarina’s work:
- Learn more about Catarina Rivera
- Watch Catarina’s speaker reel
- Watch Catarina’s TEDx Talk, “Creating Inclusive Workplaces For All”
- Download Catarina’s free accessibility eBook, Use Accessibility to Expand Your Reach: A Resource Toolkit
Learn more about John’s work:
- Learn more about John’s work at Pivot Neurodiversity
This videocast is made accessible thanks to Interpreter-Now. Learn more about our show sponsor Interpreter-Now at www.interpreter-now.com.
This episode is sponsored by First Tech Federal Credit Union, a member-owned financial institution that is powered by a people-before-profit philosophy. Learn more at First Tech Federal Credit Union.
- Catarina: “By designing from the outset for accessibility and for inclusion, you are creating a much better workplace for everyone because people who are disabled can benefit from those supports, from that accessibility. But also, you have to recognize not everyone is diagnosed; not everyone is aware of their disability and how it is impacting them…. Not everyone can access a diagnosis. We have, as well, barriers to that in terms of healthcare access or also being recognized because there have been biases and diagnostic criteria on how something is perceived to manifest…. Some employers seem to put the onus of responsibility on the employee to disclose…. However, only 21% of disabled employees disclose to HR. So, if you’re going to wait until you hit a certain number to do change work, I just think that’s misguided. Do the work. Accept that you have a lot of disabled employees you don’t know about, and that’s okay. We shouldn’t be pressuring disabled people to disclose if they’re not ready. And there shouldn’t be this gatekeeping of services, of support. Create a better workplace for everyone until we have disclosure.”
- John: “For a lot of neurodivergent people…, [we’re] taught how to mirror non-disabled people or neurotypical people, but we’re never really taught who we are and to understand ourselves as neurodivergent, understand our disabilities. And so, there can be a lot of shame…, a lot of stress there…. It always feels (with my neurodivergent students) like a bootcamp to prevent that…. I always say that as soon as you recognize yourself as boring, you find your power. And what I mean by that is…, whether we’re a chair user…, Blind, or Autistic, you’re just as boring and ordinary as anybody else. And then, you can share your extraordinary things…. Once you understand yourself as utterly normal, then you can begin to advocate for your needs.”
- Catarina: “Learning about disability is taking action. The one place you can start is learning about inclusive, non-ableist language; watching the things that pop up in our everyday speech that we may not be aware are ableist like ‘paralyzed by fear,’ ‘tone deaf,’ ‘falls on deaf ears’; [or] using words like ‘crazy,’ ‘insane,’ ‘OCD’ casually…, all of these things kind of pop up and create microaggressions. That’s one thing to work on.”
- John: “Almost every training I do, I have a manager say, ‘I think somebody on my team might be Autistic or dyslexic… Do I ask them? How do I ask them? How do I know what accommodation they [need to] have?’ I always have to stop them and say, ‘The biggest accommodation, in my view, is mindset. It’s really trying to understand the other person first before you’re understood yourself…. Create that environment where people feel comfortable asking for things and where you proactively make things available.’”
Public Speaker, DEI Consultant, Content Creator
Catarina Rivera, MSEd, MPH, CPACC is a disability public speaker, DEI consultant, and content creator with over 14 years of experience in the public sector. Catarina works with companies to improve disability awareness, inclusion, and accessibility. She is the founder of Blindish Latina, a platform smashing disability stigmas through storytelling and advocacy. Catarina has worn hearing aids from a young age and was diagnosed with a progressive vision disability at 17 years old. She has a BA from Duke University, an MSEd from Bank Street College of Education, and an MPH from Hunter College. Catarina is a Certified Professional in Accessibility Core Competencies (IAAP).
She is a member of RespectAbility’s National Disability Speakers Bureau and KeyNote Women’s Global Speakers Directory. She has been featured in Nasdaq, Authority Magazine, and as one of the top 21 DEI influencers of 2021. She was also named one of LinkedIn’s Top Voices on Disability Advocacy for 2022. Past clients have included HarperCollins Publishers, LinkedIn, Hachette Book Group, Whole30, Grant Thornton, ColorStack, and BCG Digital Ventures. Catarina is a TEDx Speaker and spoke at TEDxRolandPark in June 2022. Catarina is committed to social justice.
Founder of Pivot Neurodiversity
John Marble is the founder of Pivot Neurodiversity and is a writer and speaker on innovation, autism, and neurodiversity. In 2009, he was appointed by President Obama to the United States Office of Personnel Management. There, his work focused on workforce development, innovation, and incorporating into government services the best practices and thinking of Silicon Valley.
In addition to his White House service, he has served as an advisor and aide to Secretary Hillary Clinton, Senator John Kerry, and Vice President Al Gore.
John lives in San Francisco. He is autistic.
MELINDA: Hello, everyone! I am Melinda Briana Epler, founder and CEO of Change Catalyst and author of How To Be An Ally. I’m your host of Leading With Empathy & Allyship. Welcome!
Allyship is about learning, showing empathy, and taking action. That process often includes learning, unlearning, and relearning, then building empathy for people with different experiences, and above all, taking consistent action. So each week we’ll learn from somebody new. Please be open to new ways of thinking and understanding.
You can learn more about my work and sign up to join us for a live recording at ally.cc.
Let’s get started.
MELINDA: Hello, everyone, and welcome to our 100th episode of Leading With Empathy & Allyship. Amazing, right? We started back in April of 2020 when the world was quite different. We’re super excited. We had no idea we’d be continuing to do this for 100 episodes, but here we are. Thank you all for being a part of our community.
Before I introduce our amazing guests, I want to just take a quick moment to share about some of our impact that we’ve had 100 conversations about how to lead with empathy and take action as an ally with an incredible group of thought leaders, activists, advocates all working to create change.
We’ve reached over 50,000 people in 80 countries. So, that’s an average of about 500 views or downloads per episode since we started. Our guests have been very diverse across race, ethnicity, disability, gender, LGBTQIA+, and age, and much more. Our guests have been 68% women, 7% non-binary, 65% people of color, and we’ll share more statistics. We just started to analyze those statistics. We’ll share more of those statistics over the course of the next week.
You can check out all our amazing episodes at ally.cc. Lots of rich conversations and ways to take action. So again, thank you for being a part of our community. I want to ask, actually, please take a moment today to give us a like or a review on Apple Podcasts or YouTube. That would mean a lot to us.
I’m excited to have this conversation today about creating true disability inclusion in the workplace with two incredible guests. We have Catarina Rivera, who is a public speaker, DEI consultant, and content creator, and John Marble, who is the founder of Pivot Neurodiversity. Welcome to you both.
This episode is sponsored by First Tech Federal Credit Union, a member-owned financial institution that is powered by people before profit philosophy. You can learn more at FirstTechFed.com too.
Well, let’s begin. Let’s start first with a bit about your own stories. If you could share a bit about where you grew up, and then get to how you ended up doing the work that you do today. Catarina, can we start with you?
CATARINA: Of course. So, I’m thrilled to be here today. I also wanted to mention that my pronouns are she/ella. I’m Cuban and Puerto Rican. I grew up in Suburban Maryland. I’ve been disabled since birth. My first disability was being Hard of Hearing. I’ve worn hearing aids since I was a toddler.
When I was 17, I was diagnosed with a progressive vision disability called Usher Syndrome, which actually explains my hearing disability as well. It’s a part of it. From a career standpoint, I started my career with Teach For America as an elementary school educator, and I taught bilingual education in the Bronx.
I then moved into nutrition and public health, earning my MPH degree and transitioning into roles in different nonprofit organizations in New York City. Some of the work that I did there with youth development work, health intervention, program management, food justice, and capacity-building work, and community organizing as well.
In 2020, I started my Instagram account, @BlindishLatina, to share my story as a proud disabled Latina woman. I did not initially start out as a business, but then the following year, last year, I decided to turn it into a business because I thought that there was so much more that I could do with the platform. So, that’s how I started working as a public speaker, DEI consultant, and content creator. But I have to work to establish myself as an authority in this space since my career previously had been in a totally different area.
JOHN: Hey, everybody! This is John. Like Catarina, I was disabled from birth but with hidden disabilities that weren’t really understood. I grew up with autism, and dyscalculia, and epilepsy, but I’m old enough to grow up in a time when not a lot about autism was understood. Nobody believed that dyscalculia was real despite the fact that dyslexia ran in my family, and I mostly had nocturnal epilepsy, so that the few times that it occasionally happened in the day, I just always assumed that I was touching something electric than having seizures.
So, I grew up mainstreamed, in a way, not understanding myself with accommodations to help me thrive, which is a very common experience. Whereas I have a lot of friends who are Autistic who have high support needs, maybe they need care around the clock, or they’re nonverbal, and they’re looking for accommodations to help the mainstream. I was kind of thrown into mainstream society without being told who I was.
It wasn’t until I was an adult that I was kind of pulled forward in my career into politics, working for Vice President Al Gore and different politicians. I was actually working for the White House for President Obama, where I had a meeting with the deputy director of White House personnel who had recently been diagnosed with these things.
I remember saying to him, his name is Dave Noble, and he works in the Biden White House now. I remember Dave and I were having lunch in the White House mess. And at the end of the lunch, I said, “Dave, I have to tell you something that only my doctor, and my best friend, and my parents know. I have autism. I need to ask my manager for accommodation. I’m not exactly sure how to do that.”
It grew really quiet. It felt like 30 minutes of silence was probably half second. I thought I was going to lose my job, my career. And his response changed my life. He said, “John, that’s fantastic.” I was so confused by that. I remember Dave saying, “John, I’ve known you for a long time. You’re definitely an odd guy.” We knew each other well enough that he could say that.
He said, “Have you ever thought that your disability has helped you in your career?” And I said, “No, I’ve papered over it. I’ve overcome it. I’ve hidden it well.” And he said, “No, no.” He said, “My job is to bring together Americans from all sorts of backgrounds. We have big things that we have to tackle, and I can’t have people looking at things from a single perspective.”
So, he told me, he said, “John, I will help you get your accommodation, but I need you to first understand and accept yourself.” To this day, neither Dave and I can remember what that accommodation was. And it took a few years to really accept myself and understand myself as disabled, but once I did, everything changed. I began to navigate the world.
I was kind of led into this work just out of the passion of—Well, first of all, I should say, the great thing about working for the President is you know when your job is going to end, so I had a lot of time at the end of the administration to think about what I didn’t ask.
By saying that, coming out of my career, I just met so many people with hidden disabilities who are either struggling at work or in so many aspects of their life that I felt this is something that I need to do. So now I help companies understand neurodiversity and disability more generally and really prepare the workplace to be more accommodating.
MELINDA: Thank you for sharing that. And I think sometimes people don’t understand that there is a coming out for a lot of people with disabilities that both of your stories, I think, kind of incorporate that in one way or another. I think that is a really important acknowledgment. Thank you for sharing.
As for the next question. I want to just ask. There are a lot of people who I’ve encountered over the years doing diversity, equity, and inclusion work, who are afraid of saying or doing the wrong thing when it comes to interacting with people with disabilities and working with disabled colleagues.
I want to try to demystify that a bit, if we can, if each of you could share how you navigate work as a disabled person. What does that look like in your daily work? How is it different than somebody who is not disabled, for example? The second question is, what are some specific ways you would like people to support you as allies in your work? Or do you need support?
JOHN: Yeah, you said the word that’s the magic word. That’s fear. I just find so much fear in the workplace around disabilities. The approach that companies take a lot of times is based in fear. They look at disability from a compliance perspective or a legal perspective, but they don’t really look at it from a cultural perspective.
I think there’s a misnomer out there among non-disabled people that disabled people are just a collection of people with individual diagnosis, where in reality we meet and connect and develop shared language and community, and culture. That can be quite a joyous thing.
You mentioned coming out. I think that it is a lot of coming out that you have to do again and again. It can be scary. I work in the disability space, but sometimes I still have to think, “Do I really want to take the energy to explain autism here?” But I’ve learned that the more one can understand themselves as who they are as disabled, or really any aspect of your life, and accept yourself, you can stand in that knowledge to say, “No, this is a normal thing that I can advocate for myself.”
I’ll end by saying that it’s still hard because a lot of times, I can present as neurotypical, and people don’t understand the needs that I have. I’ll give you an example. When I moved to San Francisco, I asked, I begged friends to help me create a LinkedIn profile. I just could not understand how they did that.
My friends will laugh at me and say, “Well, John, haven’t you been to LinkedIn before?” I’m like, “Yeah, when I worked for the administration, I went there twice. I met their founder. I met their President. These are sort of the policy goals. Great campus. I don’t understand how to develop a LinkedIn profile.”
It took me going to a workshop for people with autism on how to develop a LinkedIn profile that I found people who understood my cognitive needs. So that’s one of my biggest challenges is recognizing that I need to communicate what my needs are to my colleagues and be comfortable with that.
CATARINA: I really appreciate everything that you’re sharing, John. I think like, one thing that struck me is, I just remember how long it took me to learn what my own needs were, and what my challenges were. And given that I have a progressive disability, my vision has not been the same. And depending on each job that I’ve had, different things have popped up.
I worked in Harlem in the Bronx for a long time, and the commute was much easier for me. There weren’t as many people getting off at those subway stops. But then I took the job in Midtown, New York City, and just the commute to get to work would stress me out so much, navigating a maze of people. And this was before I was using a light cane.
So, people had no idea. Like, if I bumped into them, the assumption was, “Oh, she’s rude. She’s not paying attention.” They had no idea how stressed out I was trying to just get to my office building. So, I think for non-disabled colleagues, what I would love everyone to know is that when you don’t talk about disability, and you don’t acknowledge it, I know my experience with that has been not feeling seen and just feeling isolated, in my experience, not feeling thought about.
I don’t want leaders to avoid the topic of disability. Instead of having a fear that stops you from saying anything at all, it’s so important to show up with vulnerability, with transparency and say, “I want to do something to include you. I don’t really know what to say, what to do but I have this intention.” That would invite me to engage with you, to talk about it, to come to be together in that process.
It also puts less pressure on me as a disabled person to know exactly what I need in every single situation, which unfortunately, it’s the way it’s structured oftentimes with the accommodations process. I see employers saying, “Oh, whatever you need. Just tell us. We’ll give it to you.”
But disabled people are not necessarily experts on our disability. We’re not IT people. We don’t know all the tools that are out there. I don’t know what’s compatible with your office technology in order to help me here. So, it really needs to be a conversation. I need to say disabled person should be able to say, “I’m having a challenge here.” And then, the employer should work with that whether that’s a manager, or the HR person, or the IT. But having this process that is supportive rather than compliance-oriented, as John was saying.
In terms of what my work experience is like, I am doing extra work every day that other people don’t know, kind of whether that’s heating up my lunch in the crowded office kitchen area, where someone might talk to me and I’m concerned I might not hear them, but I also don’t want to bump into people as I’m putting something in the microwave.
That’s stressful. That’s happening because I’m doing extra labor, extra mental energy. I’m showing up to meetings early to get a good seat. I’m trying to lip-read. All of these things are happening. So, I think when we were talking about support from allies, I’ve already covered it. Talk about disability, learn about it, support disabled people, and create that open dialogue.
MELINDA: Excellent. Excellent. I’m hearing from both of you. You don’t have to have all the answers to be able to be an ally, to be able to really start with a conversation. I think maybe even—John, were you going to say something else?
JOHN: Oh, I was just going to say, it’s amazing how we have different disabilities, but everything that you’re saying, I’m like, “Oh, this sounds so familiar.” that you’re just constantly navigating those things and finding those accommodations.
MELINDA: Yeah. I think it’s important to recognize intersectionality in all this too. Intersectionality of different disabilities, as well as intersectionality of different identities or aspects of identity too. Catarina, I wonder if you would share a bit about your own experience as a disabled Latina woman in the US.
CATARINA: Intersectionality is a topic that I love to talk about because that’s one of the reasons that I started my platform because I didn’t see a lot of people that were like me out there. When we talk about disability, oftentimes, the representation of disability that I would see is a White man in a wheelchair.
There are so many different types of disabled people. And, of course, people with multiple disabilities, as well. So, coming out and saying Blindish Latina in my name is really trying to say, “Hi, I am here. I exist. I have all these different identities.”
So, with intersectionality, what I always talk about is how it shows up in my own life and what that really means because I think you can talk about the theoretical definition, but actually giving examples, intersectionality as a reality in people’s lives is not always well understood.
I’ll give you an example of my experience being a disabled woman. When I would leave a subway station at nighttime with my light cane, I very acutely aware that people would know that I was disabled because of the cane. And because I’m a woman, I’m already fearful for my safety in that situation. So, I was very concerned with looking like I knew where I was going.
I would pull up a map on my phone, I would study it and I would memorize the map so that I wouldn’t have to stop and take out my phone anywhere. I put on the mean face. And sure, if you’re a woman, you can relate to putting on the mean face, the unapproachable face. So, it’s not just being a woman, also my disability layers on additional oppression in terms of how navigating the world at night.
Another example that happens to me is that I’m often touched without my consent under the guise of being helpful. I don’t think that if I was a Blind man, that would happen to me as often as it does, where people assume that I need help. They’re grabbing my arm, they’re approaching me in some way, and they’re not having the respect to ask me, “Hey, do you need any help?”
Oftentimes, it’s their own assumption that I need help. I actually might know where I’m going. I’m standing at a crosswalk, waiting to cross or whatever it is. But depending on people’s level of exposure to independent, Blind people, they might not really understand that I can be independent.
That last example I’ll share is how I show up in the workplace. I’m sure many of you can relate to this, where being a woman who has opinions in a meeting, that can be viewed negatively. If a man wants to say the same thing, they will be applauded for their leadership, taken very seriously. But communicating emphatically as a woman can be viewed as being aggressive and doesn’t necessarily help your reputation. So, I have opinions. Yes. So, that’s already happening.
With my Latino blood, Latinos can get stereotyped as being aggressive, as being loud. And so, that can also be viewed negatively. Then, them not understanding, “Oh, she’s Latina.” And then, disability. If I’m the only person speaking up for an access meet that I have, I could be viewed as a troublemaker causing us to work for others. All of these identities, then intersect in that moment to lead to me being less light, being viewed less positively, and perhaps even hindering my career in terms of promotion or advancement.
So, that’s how intersectionality showed up in my life in terms of oppression. I would say that, what’s great about my life now being my own boss, as a public speaker, and consultant is that I can be fully myself, I can show up with all of my identities, and I’m not making myself smaller or quieter for anyone.
MELINDA: I love that. So, let’s talk about some solutions, how we create change within workplace culture. For context, often, when organizations work on diversity, equity, and inclusion, I have found, we have found in our work that people with disabilities are often an afterthought rather than the forefront or at the center of the work.
So, could we talk about ways to center disabled people when we’re working to create change and create an equitable and inclusive workplace culture? Maybe we should start by saying what does equity look like for people with disabilities. John, thoughts?
JOHN: I would say, it’s just being treated as boring and ordinary as we are. There’s nothing magical or exceptional about our disabilities. I’m thinking about what Catarina just said about intersectionality. I really think having that mindset, whether you’re disabled or not, can go a long way in the workplace.
I’ll share it from this perspective. I teach neurodivergent individuals who are transitioning to work to kind of help them understand the workplace, but I also train companies to help them understand their neurodivergent employees.
In the trainings that I and my colleagues do for companies, we talk about things like the fact that a lot of people with ADHD, a lot of people with autism might have a fear of speaking up at a meeting because they’re not sure if it’s a place that others would see them as appropriate to interject themselves or not. That’s from a neurological perspective, that fear.
But as Catarina was saying, there are lots of studies out there that show social pressures on people. If you’re a woman, if you’re a person of color, if you’re an immigrant, instilling in you that fear that you might not ever speak up. So, one of the works that we do with managers is helping them solicit input from all of their employees, especially the ones that aren’t seeing anything. And for me, that’s such a joy as a work of intersectionality.
I find that our life experiences, whether we’re disabled or not, might be vastly different, but there are underlying patterns there to be addressed. I’ve gone to companies where I’ve done a presentation on neurodiversity. An executive has come up to me afterward and said, you know, not in any way connected to this, but I run our parent-employee resource group. Can you come back and say everything that you said, but just interject parents because they have a lot of the same access needs?
When we think about accommodation, accommodation is things that everybody uses. If you are a working parent and you need a bit of flexibility, you know, having that flexibility is an accommodation. If you have a need to have access through a wheelchair, that’s accommodation as well.
So, like all of this work, it is intersectional. And just realizing that “Oh, yeah, everybody on their own, whatever their inherent characteristic, is utterly boring.” What they might produce at work is interesting. So, let’s create this equal environment for everybody.
MELINDA: Great. Catarina, do you have any thoughts?
CATARINA: Yes. I had so much to say. I love what John has just shared. I’ll try to build on that in terms of equity for disabled people. One of my key messages is that we really need to focus as workplaces on designing inclusive culture and making that built-in for everyone.
As John does share, everyone has needs. Everyone has support that could benefit them. I just look at closed captions. I think that a lot of people think closed captions are for the Deaf and Hard of Hearing. But when you look at who’s actually using captions; people with ADHD, Autistic people are benefiting from captions, people who are English language learners, people who are tired., and there are people who just like captions. That helps them to better understand information.
So, by designing from the outset for accessibility and for inclusion, you are creating a much better workplace for everyone because people who are disabled can benefit from those supports from that accessibility. But also, you have to recognize not everyone is diagnosed. Not everyone is aware of their disability and how it is impacting them. So that’s important to recognize as well. Not everyone can access a diagnosis. We have as well barriers to that in terms of healthcare access or also being recognized because there have been biases and diagnostic criteria on how something is perceived to manifest. So, all of these are really important.
The reason that I mentioned all this is because some employers seem to put the onus of responsibility on the employee to disclose, and they’re very focused on, okay, there’s numbers of disabled employees. However, only 21% of disabled employees disclose to HR. So, if you’re going to wait until you hit a certain number to do change work, I just think that’s misguided.
Do the work. Accept that you have a lot of disabled employees you don’t know about, and that’s okay. We shouldn’t be pressuring disabled people to disclose if they’re not ready. And there shouldn’t be this gatekeeping of services, of support. Create a better workplace for everyone until we have disclosure. I think the motivation is already here.
That’s the first thing that I think is really important to recognize. And then, if you’re a company that is looking to build equitable and inclusive workplace culture in terms of some steps you can take, engage with experts for this work. Don’t let this work on your disabled employees on top of their full-time roles. That’s not appropriate. And also, that’s not necessarily their area of expertise.
The other thing that’s critically important, and I love that you mentioned Disability Justice already, is that when you’re working on disability inclusion, every design process needs to be designed with disabled people, not for us, and not based on assumptions, but actually with us.
When I think of building equity, I think about accessibility being invested, and it made non-negotiable. I think of designing with accessibility in mind from the beginning, having radical transparency and accountability. I love to say when, for example, a company says, “We’re working on making things accessible. Here’s our plan. Here’s what our targets are. This is what we’re going to be achieving and having that be open.”
Everyone can make a difference. This is not just something that executive leadership or strategic leaders can be responsible for. If you’re an HR, you can examine your hiring process to make it more inclusive. You can promote your job listing to disabled candidates. If you’re in marketing, you can work on digital accessibility. There’s a lot of homework for you.
If you’re in marketing, you know about alt text, transcripts, camel case, hashtags. The best practices are out there, and you can learn about them. I have a free eBook that talks about that. So, even if you don’t know what to do and you’re still learning, you can be the one to ask the question. Have we considered a disability? Have we considered accessibility? Just being the question-asker can make a difference.
MELINDA: Fantastic. And we’ll share in the show notes a link to your eBook too. Both of you gave so many different actionable things that anybody can do, that managers can do, the people driving diversity, equity, and inclusion can do, and I want to just point out again a couple of things that John mentioned—normalizing disability.
I think that is key, especially because as Catarina mentioned, so few people actually disclose their disabilities. And the chances are pretty good that a manager is going to have somebody who has a disability on their team that may not have disclosed. And so, really working to center disabled people when you’re working on creating an inclusive workplace culture is so important.
I do want to switch a little bit to self-advocacy. John, I know that you coach neurodivergent students. Can you share what self-advocacy looks like and how you work with them on self-advocacy, why it’s so important to address?
JOHN: Yeah, for a lot of neurodivergent people, we grew up, taught how to mirror non-disabled people or neurotypical people, but we’re never really taught who we are and to understand ourselves as neurodivergent, understand our disabilities.
And so, there can be a lot of shame there, a lot of stress there. And so, it always feels with my neurodivergent students like a bootcamp to prevent that to be like, “This is who you are.” or “I’m going to help you figure out who you are.” And then, let’s get comfortable with that.
I always say that as soon as you recognize yourself as boring, you find your power. And what I mean by that is, you know, whether we’re a chair user, or Blind, or Autistic, you’re just as boring and ordinary as anybody else. And then, you can share your extraordinary things. It’s amazing that I find so many disabled people are just self-internalizing that otherness.
It’s really, once you understand yourself as utterly normal, that you can begin to advocate for your needs. It’s something that a lot of times we have to practice and relearn that we’re normal again and again of like, “No, why should I shy away from asking for this accommodation? Why should I shy away from discussing who I am?”
I always say Whitney Houston sings The Greatest Love of All is learning to love yourself. That sounds kind of trite, but it’s the hardest lesson to learn. And it’s why Lizzo has so many songs about that as well. It’s utterly hard to be like, “Yeah, I’m okay. I’m okay. Why should I act like I’m okay?”
MELINDA: Thank you. Catarina, similarly, when we discussed belonging, often phrases like our authentic selves and becoming our authentic selves or having a space to be our authentic selves is a key part of that work. And yet, you’ve shared that it can be difficult for some people with disabilities as they’re navigating their emerging needs. Your emerging needs over time have changed. What advice can you share here about self-advocacy?
CATARINA: First of all, I just want to say to any disabled person that is listening that wherever you are in your journey, it is okay. You do not need to compare yourself to anybody else. For example, I resisted using a light cane the first time that it was introduced. It was not until years later that I asked for it and said, “Okay, I need to use it. I want to get cane training.” That was six years ago.
I had many years. Maybe 8-10 years that, I didn’t talk a lot about my disability. It was still very hard for me. It was not something that I would share with others readily, especially if I just met them. Adjusting to using a light cane all the time. And I had to get even more comfortable with my disability. We’re having conversations with self-advocacy. And that spurred me to become a very strong self-advocate. Once I got over the concern of people looking at me, judging me.
I know that some Blind people get accused of faking their blindness, which is awful and terrible, whether it happens in person or online. This is harassment that’s very real and out there in our ableist world. So that is something I do get concerned about. But I see the benefits of self-advocacy, but it’s helped me many years to get here. So, wherever you are, it’s okay.
Our inclusion in this world should not depend on us speaking up and agitating. It’s not supposed to all be on us. And so, if you’re a workplace leader, I hope that you take this message to heart and create a workplace that works for everyone, not waiting for employees to speak up or to ask for specific things. Just owning that the work needs to be done and that it should be a priority.
So, if you do want to self-advocate, if you’re disabled and you’re ready, I highly encourage you to seek support from others. Just find community. Joining the disability community and connecting across disability has been so powerful for me. Because before I kind of stayed with, okay, Blind people only, and then they opened up. Even just on Instagram. Following creators who have a chronic illness or mental health conditions, or cognitive disabilities. I learned so much, and I feel stronger being a part of that class disability community.
If you’re ready to take leadership, and there’s no ERG or BRG for disability, maybe you’d like to start one. But it always has to be someone who begins and starts the efforts. Reading books that are always great to do learning about their identity. In the workplace. You can advocate in different ways. Examples are, you could write an internal memo and make a recommendation. You could collaborate with other departments and work on an initiative. You could meet with somebody one on one and then invite them to change something they’re doing or to be your ally in some specific way. You could model inclusive behavior and explain why you do it. That’s not saying that we just do in the classroom as a teacher and just show children how we read books and what we think about them.
By making something that people might not be understanding why you’re doing it understandable, then they’re more likely to adopt that behavior. So, if I say I’m using the raised hand button because that means that everyone has an equitable chance and speaking up, and we don’t just hear the dominant voices, that is somewhere we might have a light bulb moment. So, I hope that is supportive for all of you. I definitely think that being part of the community is the number one thing that helped me.
MELINDA: Fantastic. Fantastic. Lots of actionable things there we can use to take action. The last question here is around ERGs. Because I know both of you have worked with ERGs in one capacity or another or have influenced ERGs. Can you share us a few specific activities that ERGs can do to really drive change?
JOHN: Yeah. I might bifurcate my answer. The first part of it is just to brag about some people. And that’s the neurodiversity community at Square in their parent company block. When I first started doing this, the first lunch and learn on neurodiversity I did was at Square, and about four people hung out afterward to say, you know, “We’re Autistic or ADHD. We’re thinking about doing a neurodiversity employee group. Who does this really well?” This isn’t too long ago. And at that point, I was like, “You want to be the first one?”
Now, there’s a good number of companies. It started with four people. I was just talking to one of their leaders yesterday, and he said they have over 1200 employees in that group now. One of the things that they did well, from the beginning, was recognizing the intersectionality of disability to recognize that there’s neuro-diversion in otherwise disabled people within the other employee groups. And if there are other employee communities, they should be represented within the neurodiversity group.
So right from the beginning, they took this intersectional approach. It’s made disability joyous at Square, where they invite people who use their products and demonstrate them, where disability and neurodiversity are included within all the other communities. And so, just have to say that, again, a lot of times, companies view disability as just individuals with individual conditions, but there’s a community there. There’s culture. There’s support. And that goes for all of your communities, not just disabled people. Give people the platform to connect and share their experiences with other people, and they’ll flourish.
I said I’ll bifurcate the answer. I’ll try to be quick. Part of it is managing your responsibility. Almost every training I do, I have a manager say, “I think somebody on my team might be Autistic or dyslexic, or I don’t know what I have to do. Do I ask them? How do I ask them? How do I know what accommodation they need to have?”
I always have to stop them and say, “The biggest accommodation, in my view, is a mindset. It’s really trying to understand the other person first before you’re understood yourself.” And just as Catarina was talking about practical things, create that environment where people feel comfortable asking for things and where you proactively make things available.
Once, I kind of get managers to realize that they’re like, “Oh, yeah. I can do that.” It can be joyous work. And like, I don’t—I mean, I know why. I know why people are scared of disability. But, like, inside me, I’m like, I don’t know why people are scared of disability. This can be joyous work.
MELINDA: Catarina, any additional thoughts?
CATARINA: In terms of doing work with an affinity group, ERG, BRG, one thing that I highly suggest, depending on the size of your company, is that you make a clear decision on whether the group will be open to disabled employees and allies or just disabled employees.
I was working at a small nonprofit that had less than 250 employees. We open the group to allies as well. And I found this to be pretty inclusive because that meant that someone didn’t even have to disclose in order to join the group. They were not ready, or they had a disability touching their lives in some other way or a family member, so we were able to get a base of members because you need members. So just make a decision that really works for what your intentions are and what your company size allows for.
The other thing that I think is important for any ERG or group like that is I highly recommend you set your goals and not just become an activity-based group. It’s very easy to just create events and feel like you are making a difference. You might not be making the difference that you think you are. You might just be talking and not changing policies internally or not creating an impact on the structures that will guide everyone in your company. So, I think it’s great to have a mix of events and strategic initiatives.
I’ll give you an example. My organization was building a new building. It was a complete renovation, so we, as a group, were able to meet with the architects and look at the plans and ask questions about accessibility and provide recommendations. We were able to advise on the bathroom signage and how to make that inclusive. We all felt like that was very tangible. So, look for ways to create impact as well as events.
MELINDA: Excellent. Excellent. So, we’ll jump to Q&A now. Maybe I’ll ask this of you, Catarina, from the manager’s view. Do you have any words of advice for how to incorporate disability-related inclusion if you’re inexperienced in this area? So maybe, where’s one way that somebody can get started as a manager? What should they do first?
CATARINA: I mean, as a manager, I think that if you are trying to get to a place of taking action without engaging in the learning, you’re going to miss some steps. I do think that learning about disability is taking action. The one place you can start is learning about inclusive, non-ableist language, watching the things that pop up in our everyday speech that we may not be aware are ableist, like paralyzed by fear, tone deaf, falls on deaf ears. Using words like crazy, insane, OCD casually. So, all of these things kind of pop up and create microaggressions. That’s one thing to work on.
If you’re going to do anything as a manager and you just want to start learning about disability, I highly recommend watching Crip Camp on Netflix or free on YouTube. It is a documentary. It’s Oscar-nominated. I think this can start anybody’s learning journey.
There’s also an associated website with a curriculum, so you can feel supported as you continue to learn. That’s really a good place to start. I wouldn’t be concerned about, okay, you’re not taking action, like, right away. You can also come over to my Instagram. I have a guide with workplace inclusion tips. So, there’s information out there that you can access.
MELINDA: Excellent. John, is it appropriate for colleagues to understand accommodations for disabled peers? Or is that too intrusive?
JOHN: What do you mean by understanding accommodations?
MELINDA: I think maybe ask about accommodations. Yeah.
JOHN: Okay. Yeah. I mean, again, I get asked a lot, like, how do I know what accommodations somebody needs? How do I address them? Again, it goes back to. It was like, let’s just first start with empathy and understanding and learning things as Catarina was saying, in creating an environment where the individual can ask for those things. And really having a proactive mindset of providing accommodations.
What I mean by that is, there’s a lot of ways to think about disability. One of the ways to think about it is what we call the social model of disability. And certainly, you know, there’s flaws with that model. But in a nutshell, it’s recognizing that individuals are more disabled by a society that’s not designed for them than any inherent impairment that we might have.
In learning that, you begin to see how you can accommodate people in all sorts of ways. And what I mean by that is, once I started to think about the social model of disability, I started thinking about, well, what am I doing to disable other people? How can I accommodate for that? It’s more of an action.
Am I disabling women by doing a different approach? Am I disabling people of color? Am I disabling people with physical impairments? Once you begin to think about it as accommodation is not something that somebody needs, but accommodation is something that I can do, you can begin to kind of proactively search out those things in your office. Sorry, the car just stopped honking. So hopefully, some of that came out right.
MELINDA: It did, indeed.
JOHN: A lot of Autistic people can have difficulties with cognitive thinking when there’s a noise like that.
MELINDA: Yeah. Well, even I do too. And so, I can only imagine. Yeah, thank you. I think we have time for one more question. Catarina, what if you voiced your disability and it’s dismissed by the employer or used against you? Are there any suggestions you have for what you can do if that happens? If you’re dismissed, or even worse if somebody is using it against you.
CATARINA: First of all, I just want to validate your experience. This is real discrimination of disability. While we have the Americans with Disabilities Act that was passed in 1990, it has not solved discrimination. It has not eliminated ableism in our country. So, this is still happening. I’m so sorry if this happened to you. You’re not alone in your experience.
There are many stories I hear of disabled employees being denied reasonable accommodations. Even things like remote work that then were easy to implement when it became a necessity for everyone. I’d say that if you have been dismissed by your employer, if your disability has been used against you, and you have a choice of what would be right for you, you can contact a disability rights organization in your state. I don’t know if there’s one in every state, but I was able to get support from Disability Rights in New York.
I know there’s one Disability Rights California, so search for disability rights and then your state name and see what is going on in there. You might be able to contact the Job Accommodations Network, askjan.org, and see what their advice would be. But really, is your goal to stay? Or is your goal to receive, you know, to sue your employer for discrimination or to find another job? It really depends on what your goal is.
It’s not a good situation, and it feels terrible when you’re not supported and you’re not believed. And so, I wish that wasn’t happening to disabled people, but I know that it is. And oftentimes, disabled people become entrepreneurs and create their own paths because of situations like that.
MELINDA: Yeah, absolutely. And, John, I see you have something to say. I just want to add, also the EEOC is another resource there. Go ahead, John.
JOHN: Yeah, just to support what Catarina said, you know, I talked about the power of seeing yourself as normal. I talk about self-advocacy. That doesn’t mean it’s easy. I talked about earlier how I disclosed to the White House, and it changed my career for the good. I also disclosed the job, and I found all of my work reassigned to my 21-year-old intern. Not for the White House. It’s for another job. It took a while to have that resolved. It can be a scary thing.
As Catarina is talking about, as I have talked about, there are people who can help you. There are communities like you. I think any sort of person who’s another in a larger society, you know, people form communities and language around that. So, you’re not alone. It doesn’t mean that it’s always great or it’s not scary, but there are others like you.
MELINDA: Thank you. Thank you for adding that. And thank you both so much for sharing your expertise and your experiences here today. You’ve both given so many actionable things that any of us can do to make a difference. And whether we have a disability or we don’t have a disability, there are so many different ways that we can advocate for each other and ourselves and really work to create change in the culture of our workplaces. So, I really appreciate both of you.
CATARINA: Thank you.
MELINDA: Go ahead, John.
JOHN: Oh, I didn’t have anything but thank you. I also encourage people to download Catarina’s guide. I will be doing that. I didn’t realize that that was a resource. So, thank you, Catarina, for that. Although my business is training companies, I do, at least twice a month, a free introductory to neurodiversity, you know, what I charge companies for just individuals as a public service. So, look me up on LinkedIn, and I’m happy to connect you with the free session. And definitely download Caterina’s guide, which I’ll be doing right after this.
MELINDA: Excellent. Excellent. I usually ask, and I forgot where people could learn more about you and your work.
CATARINA: And then, I would love to add that I also delivered a TEDx talk this year called Creating Inclusive Workplaces for All. It’s only 11 minutes. It is a great start to getting the mindset around disability inclusion for people that might not have that exposure. I’ve shared it with my clients. Some of them have shared it with their whole executive leadership team. Some have sent it out internally. So, I just hope that it can reach as many people as possible and create that impact.
MELINDA: Excellent. Excellent. And we’ll share those resources that we discussed in our show notes. So, thank you again to our sponsor, First Tech Federal Credit Union, where you can learn more about them at FirstTechFed.com. And to our in-kind sponsors, as well as Interpreter Now. I really appreciate you.
If you’re interested in going deeper into these topics around inclusion for people with disabilities, there are lots of episodes in the past as well that you can check out. Episode Five with Tiffany Yu, Episode 23 with KR Liu, Episode 27 with Victor Calise, Episode 59 with Emily Ladau, Episode 74 with Tim Goldstein, 92 with Lydia X. Z. Brown, 93 with Eleanor Lisney and Eddie Ndopu, and Episode 98 with Victor Pineda.
And then we’ve also had a few episodes specifically focusing on mental health and mental illness as well. So, lots of resources for you. Thank you all for tuning in. And please take action. Thanks, everyone.
MELINDA: We’ll share resources and a transcript from this discussion at ally.cc.
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Leading With Empathy & Allyship is a show by Change Catalyst where we build inclusive innovation through training, consulting, and events. You can learn more about us at ChangeCatalyst.co.
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Host: Melinda Briana Epler
Melinda Briana Epler has over 25 years of experience developing business innovation and inclusion strategies for startups, Fortune 500 companies, and global NGOs.
As CEO of Change Catalyst, Melinda currently works with the tech industry to solve diversity and inclusion together. Using her background in storytelling and large-scale culture change, she is a strategic advisor for tech companies, tech hubs, and governments around the world. She co-leads a series of global solutions-focused conferences called Tech Inclusion, where she has partnered with over 450 tech companies and community organizations and hosted 43 solutions-focused diversity and inclusion events around the world.
Previously, Melinda was a Marketing and Culture Executive and award-winning documentary filmmaker – her film and television work includes projects that exposed the AIDS crisis in South Africa, explored women’s rights in Turkey, and prepared communities for the effects of climate change. She has worked on several television shows, including NBC’s The West Wing.
Melinda is a TED speaker. She speaks, mentors and writes about diversity and inclusion in tech, allyship, social entrepreneurship, underrepresented entrepreneurs and investing. She has spoken on hundreds of stages around the world, including SXSW, Grace Hopper, Wisdom 2.0, the World Bank, Obama White House, Clinton Foundation, Black Enterprise, Google, Indeed, Capital One and McKinsey.
Watch Melinda’s TED Talk
Change Catalyst Co-Founder Melinda Briana Epler has spoken across the globe in hundreds of venues and virtual events. Empathy, Allyship, Advocacy, Microaggressions, Inclusive Leadership, and Building Inclusive Teams are just some of the topics Melinda has spoken on. Let us know about your next speaking engagement needs! Melinda has also spoken on how to build organizational capacity to advance diversity, equity, and inclusion, such as how to lead behavior change or how to build allies and advocates.
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