Episode 9: Becky Kekula from Disability:IN

Becky Kekula is a social change advocate, dynamic public speaker, and driving force behind the Disability Equality Index (DEI) from Disability:IN. A lifelong advocate for the rights and representation of people living with disabilities, Becky has covered many miles, touched many hearts, and has made a real impact on how people with disabilities are treated in the workplace. Becky joined Cause & Purpose to share her lived experiences, and talk about some of her struggles, successes, and failures from a life advocating for equal treatment for everyone.

Among people with Dwarfism, 80% are born into average height families with no prior history of Dwarfism. The unexpected nature of this scenario can be scary, which was the case for Becky’s parents. But they didn’t let fear win. Instead, they became a resource for others whose children were born with Dwarfism, and they committed to raising Becky in an environment that fostered a strong sense of advocacy and support for Dwarfism. Being the empathetic and hard working person she is, Becky soon took that spirit of advocacy and extended beyond Dwarfism to all people with any form of disability. Determination took her through college, into a successful career in Hollywood to increase representation of Little People in media, and ultimately to DisabilityIN, a nonprofit that assists major corporations trying to include people with disabilities in a meaningful way in their workplaces.

Becky chose to get involved with Hollywood not because she wanted to be famous, but because she understood that what people see in the media has a major influence on their societal perceptions in general. When it comes to diversity related topics, especially individuals with disabilities, it can spark fear, curiosity, or respect depending on how those individuals are portrayed. 

Think about RJ Mitte and his portrayal as Walt Jr. in the insanely popular show Breaking Bad. His character on the show was written to have cerebral palsy, and Mitte has cerebral palsy in real life. But that wasn’t what the show was about: it was who his character was, who Mitte is, and it became a dimension of life shown through a Hollywood lens viewers grew comfortable with. That’s power over perception.

However, despite the progress that she herself has helped achieve in the entertainment industry, Becky thought there wasn’t enough forward momentum. She still saw people with disabilities turned away from roles that portrayed people with disabilities. Understandably, it was frustrating. 

“About 3% of roles in Hollywood portrayed disability, meaning the description of the character has a disability. But of the 3%, 85% are played by those without disabilities. So it's like more than three-fourths of the characters that exist that say disability are still portrayed by those without. We've made progress but we’ve got a ways to go.”

She realized that the real change in Hollywood would have to come from higher up at major entertainment media companies. And even if Hollywood changed, there were still plenty of other corporations in the world that needed help meaningfully including people with disabilities in their workplaces. That’s one of the main reasons Becky switched gears and got involved with Disability:IN. 

She manages a tool at Disability:IN called the Disability Equality Index (DEI), which is a benchmarking asset designed to help companies consider disabilities in every part of their work stream. That includes outward facing clients from a digital accessibility standpoint as well as internal employees with benefits, recruitment strategies, accommodations, and promotions.

“So many employers are saying, ‘We want to hire more people with disabilities. We just don't know how.’ We’ve been able to do research that proves that companies that are disability-inclusive are doing better financially. And those companies who do engage with the Disability Equality Index...are more motivated to hire more people with disabilities.”

Disability:IN also hosts a mentorship program, Next Gen Leaders, for students with disabilities in the STEM, finance, or business fields. After they complete the program, they’re hired by one of the nonprofit’s Fortune 1000 corporate partners who are all eager to make a real, tangible impact for people with disabilities in the corporate, working world. 

The next big hurdle for Becky and Disability:IN is to help show companies that this is an area that they need to be focused on. Typically, companies want to focus on people of color, women, and LGBT before they start any efforts around disability-inclusion. But it’s something that should be considered right alongside other diversity initiatives from step one. 

“Every organization, every human being, is impacted by disability in one way or another. One in three American households, and at least one person in someone's life, has some type of disability.”

Becky told Hollywood, she tells major corporations every day, and she’s telling us here on the Cause & Purpose podcast right now: you just need to acknowledge that you’re willing to be inclusive. Sometimes, that’s all it takes to blaze a trail that others can follow.

Key Questions and Takeaways:

Be vulnerable and share your stories and relationships to disability with others.

Get ready to work, because the culture won't change overnight without your help.

Don't be afraid of rejection and adversity: let it fuel your passion and never give up.

Remember that your hard work will serve as an example for someone else who comes after you.

Support

Becky

's Work:

Head to Becky's website, BeckyMotivates, where you can read more about her story, contact her about public speaking and personal appearances, and read her blog.

Visit Her Site

Episode Transcript:

MIKE SPEAR: Welcome to “Cause & Purpose,” the show about leaders, innovators, and change agents, working on the front lines to solve some of the world’s greatest social challenges. 

I’m Mike Spear and todays’ guest is Becky Kekula. Becky is the director and thought leader behind the Disability equality index produced every year by Disability:IN. Becky is an accomplished speaker, makrter, and staunch advocate for people living with disabilities of any kind. As a person with Dwarfism herself, Bekcy brings a unique perspective and mix of experiences to bear in everything she does. And we couldn’t be more excited to have her on the program today to share her stories with you. 

Becky, thanks so much for being here. Being born with Dwarfism, your experience in diversity and inclusion began right away. It seems that even before you were born you had the foundation you needed to make a career advocating for equal treatment for everyone, starting with your parents. 

BECKY KEKULA: When parents go to the hospital, they're excited to meet their newborn child and they assume that everything is going to go seamlessly and that they're going to have this quote unquote perfect future with their child. And in that moment, when you find out that things aren't going to be perfect, you have to act pretty fast on deciding whether or not you're going to take the bull by its horns and run with it, or you're going to run away. So this is very common for people who are born with Dwarfism, 80% of us are born into average height families without any history of Dwarfism. So it's very common for someone to get scared because there aren't any real great positive portrayals, at least up until the point when I was born back in the eighties, and people just assume if they have a child with Dwarfism, their lives are over because they have no knowledge about Dwarfism.

And fortunately, my parents, of course, were nervous. They were scared. They didn't know what it meant when the nurse said your child has Dwarfism. That meant nothing to them. But then there were further complications. What they didn't know if I was going to make it through the night I was having breathing trouble. And then they did have to seek out further consultation with geneticists and other doctors after I was born, but really decided let's do as much research as possible and figure out how to give her the best life possible. And that started with advocating, from an early age. I know you've probably heard me tell this story before, but when they went and met with a geneticist, the geneticist branded themselves as a birth defects doctor and my parents convinced them that they needed to change those signs for the future of families like them, who just want to get some answers from a geneticist that they can hopefully trust.

And we know how important branding and marketing is. And if you market yourself in a false way, you're going to lose that level of trust real fast. And then they went on to become a resource for people in the community. If the local hospital had someone with Dwarfism come into the delivery room, they were able to have conversations. There was one family that called my parents and they were kicking and screaming saying, “We don't want to bring it home,” referring to their newborn child Dwarfism. And what's harmful about that when you do make the decision that you'll keep your child, but you'll be resentful is that that child grows up with no sense of confidence or self-esteem. 

So my parents also, even though they decided to get me, which I'm very thankful for and I always thank them, and they think I'm crazy for thanking them so much. They were able to help me build confidence at the same time, because they found a way to stay positive. Maybe there were many closed doors, deep cries that they had because they just didn't always have the answers they needed, but they didn't show that part of themselves in front of me. And that allowed me to continue to build self-esteem and confidence, and they would always joke in the household. So I would be prepared for those outside comments where people constantly reminded me that I was different.

MIKE SPEAR: The surgeries and things that you had, is that common to Dwarfism, or is that unique to you? I'm also thinking about, I know Down Syndrome folks have a lot of congenital heart defects, Leukemia, I think is pretty common in that community. 

BECKY KEKULA: I would say yes, a majority of people with Dwarfism do not go their whole life without having at least a few medical procedures. It was important early on when my parents found a medical specialist for them to address whatever may come up later, address it earlier, because as you become an adult surgeries become more complicated. And it doesn't mean that you're never going to have to have them as an adult, but if you kind of take care of all the hardware, things that may come up at an early, more resilient age, it was the recommended route for them to go. But then I also have several friends who have never had a surgery, but there could be really bad complications that come up in the near future. And it really kinda depends on what you learned from the doctors and whether or not you want to trust.

But I think the biggest struggle is that people look at me and they say, “You don't have a disability” because they just say, “Yeah, I can walk just like anyone else.” And they look at disability as a much scarier word, but my parents were able to kind of help me navigate those surgeries. And I don't think we just don't talk about surgeries as much because we don't want the outside world to feel bad for us. Or like if someone brings up that they have cancer, that they're sick in the workplace, all of a sudden they're worried that the level of trust in the quality of their work is going to go down and that they may be risking losing their jobs. So if we talk about all the different surgeries we had to have grown up or could have in the future, it may then affect our future at an organization or in a community. And it's scary to find that balance.

MIKE SPEAR: Going through stuff like that at such an early age has to teach you resilience. It has to teach you confidence, and maybe turn the volume down on some of the insecurities that a lot of kids would feel normally. Has that been the case?

BECKY KEKULA: Yeah. So one of the scariest moments was I was sailing one summer. It was before my sophomore year in high school and I was wearing a wetsuit and it was really, it felt kind of tight. And I thought that my circulation was just being cut off because the wetsuit was tight, but that feeling of numbness never went away. And then I lost my ability to walk and it was clear that I needed to have surgery and I was going to miss 29 days of school. And it was scary to me that I was going to fall behind in school. I didn't think of all the complications that could also come with the surgery, but that was what I was the most fearful of, probably because I had been through other surgeries, just not any as major as that one. But what was interesting was there was a going away party, basically maybe a goodbye party, cause we didn't know what consequences could come from the surgery.

And I remember even though this party was for me, people got together just to support me during this tough time. There were so many people who were hesitant to talk to me because they didn't know what to say because they got a message somewhere that like, I may not make it through the surgery. Like I have to have this surgery, but I may not make it. And that was like the hardest thing for me to feel isolated. I couldn't even talk to the people who were closest to me because they were fearful of saying the wrong thing. In that moment, it wasn't because of my Dwarfism, it was just because they didn't know if I was ever gonna be in their presence again. And that was one of those crazy moments where I thought I gotta stay strong, almost stronger than the people around me, to feel convinced that I'm going to be okay.

MIKE SPEAR: That's an interesting dynamic. I think it's sort of human nature that you see that with anybody who's going through something like that is they're the ones staying strong for their friends and family.

BECKY KEKULA: That happens. My niece who's two years old. My aunt has ovarian cancer and my niece has been taught, especially during these times to just stay away. So she doesn't spread any germs to my aunt. And my aunt asked her the other day to come for a hug. They both had their masks on, but my niece just is trained, especially as a two year old you're, you're trained in a certain way, just stay away. So it was, you could see that pivotal moment of like trying to get it to work where they could have a hug, but like then where do you go from there? And it's hard and I think just in general human nature, I think people are afraid to say the wrong thing, no matter what the scenario may be, because they don't want to make things worse or admit that they've been in those shoes or know what the experiences are like.

I had one friend who told me when we were growing up. I think it was before that surgery, but it was sailing every summer. I would go sailing. There was one friend, and she, it was like, if I could live one day just in those shoes and she would just try to wrap her head around it, but knew that she could never speak to my exact lived experience. And, and almost wished during those hard times she could kind of take that pain away.

MIKE SPEAR: You also talk about, at times growing up was a bit of an isolating experience, but then you discovered a community when you went to the Little People of America conference? Can you talk about that story a little bit, that sort of transition from, for lack of a better word, I guess, loneliness to finding your tribe?

BECKY KEKULA: You know, when you can get those like flyers in the mail and you don't know whether or not to read them? There was a Little People Convention happening in Minneapolis, Minnesota. I think it was like in ‘97 or ‘98 or something. And I was intrigued, but I didn't really know if I wanted to be involved. So up until that point until my high school years, my parents continued to be a resource to new families who had a child with Dwarfism. We would meet, we would go to a doctor in Baltimore at least once a year, who was a specialist in Dwarfism. But those are kind of the only ways that I met other people, with Dwarfism. A few people maybe I was pen pals with, but they weren't part of my social circles. And I did have a strong group of average height friends that I went through my school years with and didn't really think I needed that.

I think because of facing so many rejections, I've told the job search story and how hard it was to get that first job. Going through so many experiences where I just didn't know why it didn't lead to anything, anything even meaning the communication and courage for someone to tell me, “No” they're not giving me the job. It was like the experience of ghosting. And I think it's kind of a cop out. Like it prevents people from engaging in maybe something they're not comfortable with without having a reason. Like, I think the topic of fear is often talked about. I was supposed to do a TEDx and I'm still hoping to do it, but it's all about fear. People are fearful and it gets in the way of them learning and growing. And I think people are fearful to provide feedback because they don't want to insult someone. But how is someone going to be able to move up within an organization if they don't get the support they need, or if they keep making the same mistakes, how are they going to know that it's a mistake.

Just historically I think people think, “Oh, if someone's different, they're on a different playing field.” So we don't need to have the same expectations of them performing on our level. But as long as they're performing, they're inspirational. And even if they're existing, they're fine.

And it was like, it takes those moments to just open my mouth and have the conversation to kind of let someone feel a little more comfortable. I think it took a while to build to that.

MIKE SPEAR: It would have been very easy to just be dismissive, but you seem to have turned everything into a learning experience.

BECKY KEKULA: Yes. I think in those moments, in my head thinking, “Forget you guys,” even though I was feeling discouraged, but I wouldn't want to be in an environment that would even let people act that way. And it's hard as that is, because it happened time and time again, and no one verbally said anything in my presence at least during those early stages, but it was all body language. Like I could tell they were extremely uncomfortable or they were rushing through the interview and really just not engaging or giving me eye contact in return. And I was taught all these skills for interviewing and eye contact.

MIKE SPEAR: I want to use these skills that I know.

BECKY KEKULA: Looking back, I wouldn't have wanted to be in those environments, but also looking back, I think about what if I put on my resume at that point that I did have Dwarfism, would that weed out those awkward interviews and what I really just have fewer and then I could give my best delivery or I don't know which way it would have gone. Because it was before LinkedIn. It was before I was on social media where it was obvious that I had Dwarfism through pictures.

MIKE SPEAR: You could avoid it I guess, but it seems like a balance. How else do you break that glass ceiling?

BECKY KEKULA: Yeah. And that's why from that point forward. So after my first job, which took a hundred interviews to get and a few temporary assignments, I made sure from that point forward, I was just going to be open whether I was applying to the next job opportunities at places where I didn't know anyone or through personal networking. And then I continued to do that even when I was living in New York City and I was looking for roommates and I was transparent about that. And that way, because I have had previous experiences, even with roommates to where it was a surprise. And I wanted to just make sure that I could authentically tell people who I was and weed out those people who didn't want to respond, even if it would have taken a little longer to secure those relationships.

But then once I got to high school, my friends started dating. That's when I kind of started feeling that isolation because there weren't other people like me or I wasn't considered the dating type because just people didn't know what to do with me. I got along with guys, but maybe they were worried about what their friends would think if they dated someone like me. All sorts of complications. And of course, I think one of the other struggles, even when we were talking about constructive feedback and even these relationships is it's all kind of based on assumptions because there was no context provided or reasoning for how people would act. And if I could go back in time and just read people's minds and just clear the air in every scenario, I don't know if it would be better or worse, but I would at least gain more clarity as to why I was experiencing those things in high school.

And it was a family who my parents met. They live in California, but they had a son who was a month older than me that was born with Dwarfism a month before me in the Boston area. And they were coming to Boston for this Little People Convention that was happening in 2003. It was after my freshman year in college. And they said, “You guys should come with us. It's like in your backyard. Why aren't you coming to this convention? Because you can meet a lot of people, especially since Becky hasn't been involved.” And I was hesitant, it was nerve-racking thinking about being like the new kid on the block because a lot of these people had grown up in this organization, but they have this convention once a year in a different city. It's a week long, usually over the 4th of July week.

And it's an opportunity for people with Dwarfism and their families to get together, go to medical workshops. There's different events at night like fashion shows and talent shows, and there are sporting events. So there was a lot happening. I didn't know if I wanted to go, but I thought, you know what? It's in our backyard, let's go. I eased into it. And it happened to be a tight knit group of people who had grown up together. And they kind of brought me under their wing and then convinced me to kind of get involved even throughout the year outside of that week.

And I would spend my spring breaks going out to California and going to different regional events. I think what's also important is for us to understand that each community has its flaws because someone is part of a certain community doesn't mean that they're going to get along with everyone, but you're going to try your best and try to set a good example. And I think the most value I've found out of it is to be a resource to those new parents kind of as my way of giving back to what my parents did for me and the people who came after me. But it continues to evolve. I'm the employment chair for the organization to really try to help build out that pillar. Because I think just like I was talking about the few resources we had to figure out what career path we wanted. I want people to understand that the options are all out there and we need to continue to educate people on how the community exists because not everyone in the Dwarfism community identifies as having a disability. So then it pigeonholes us into a different category, but then recruiters are actively knowing how to seek us out.

MIKE SPEAR: Her desire to inform and educate about Dwarfism led Becky to embark on a career in Hollywood to increase representation of Little People in the media. She felt that if more people saw people with disabilities portrayed authentically in the media by actors whose lived experience actually fit the part they were playing, the world would be a more just and inclusive place where everyone with disab would have a better chance for equal treatment. 

BECKY KEKULA: In 2014, I believe it was, there were two Snow White movies that came out. There was one Snow White and the Huntsman and one called Mirror Mirror. Mirror Mirror had the Seven Dwarves as actually Little People, actors playing them, snow white. And the Huntsman had average hide actors who were computer animated to be shrunk down to play dwarves. And what was problematic about that is even though these average height actors are big name actors that allow for box office money to come in, flowing strong, they're acting as people with Dwarfism, even though it's fictional, they're still acting as people with Dwarfism. So they're portraying fictional characters based on how they think people with Dwarfism are in real life. So they have no other notion other than what's been a historic representation of us as elves and creatures that people aren’t big fans of because we're scary. There have been many avenues with reality TV where people Dwarfism or portrayed, but pretty much like what we see in the media can either make them fearful of us or curious, and maybe a little bit more respectful if they saw something that was educational. 

If people see us in a negative light, they're going to be fearful. And so it goes back to when parents are in the delivery room, deciding whether or not to have their child. If they saw some creepy leprechaun in a movie the night before they're at the delivery room, they're going to be a little more hesitant. So that really sparked my passion. It was in college where I had some internships related to the entertainment industry in advertising. And I did some casting and promotions and publicity at a TV station. And that's when I started to learn that this industry has a lot of influence on societal perceptions, just in general, even if it's not diversity related. So that's when I really persisted and decided I needed a career in that background, but I was also wanting to find something I was going to be good at.

So I chose marketing as my major in college because it was something that I enjoyed. So I wanted to go in and apply to jobs with that marketing experience. And then later speak to my passion for the D&I space and changing how people with disabilities are portrayed in the media. So it took four years working at a big talent agency, a well-oiled machine, a great place to learn everything about the entertainment business for people to start asking me, what was it that I was passionate about? And I said, I'm passionate about changing what we see in the media. Because it affects how people like me are treated in society. I was given a platform to be able to host a panel discussion of people with disabilities in front of and behind the camera. And they talked about their challenges as they're navigating the entertainment industry and how there's still a lot of exclusion, even up until this point. That panel discussion took place in 2011.Now it's 2020, and there's still a lot of progress to be made, but progress has been made since then. 

And it's really just making sure that when characters are written out as a character with a disability, someone with a disability should be able to play it because they have that lived experience and can be the best person for the role. But there's that assumption that people with disabilities have no experience, but every name actor had to start out early on with no experience because you need to be given an opportunity in order to get the experience. I moved over to television casting to try to influence the speaking roles for TV shows. Unfortunately, there still was not a lot of eagerness to take that chance and still that happens. So writers and directors may write a role that says disability, but even people with disabilities aren't given the chance to play themselves because I think there's that miscommunication between casting and the writers directors, or just worrying about offending someone's creative direction as a writer. But if a writer has that lived experience like Breaking Bad has had RJ Mitte who has Cerebral Palsy in real life. It was based off of a character that was written based off of the writer's experience with this person in real life. And that's usually what it takes, putting someone getting more writers to write content based on their experience with a disability, because it is around us more than we think.

MIKE SPEAR : Yeah, I'm glad you brought up RJ Mitte. I'm a huge Breaking Bad fan and he was great in the role, but it does seem to me that the fact of his Cerebral Palsy was sort of incidental to the character in a way. I mean, it was who he was, but there was nothing about that character or the plot, I guess that made him have to have Cerebral Palsy. And we've talked a little bit about adding that as a dimension to a character that may have other sort of archetypical things, but where the ability or disability or whatever is not really part of the character. Can you talk about the importance of adding that in as sort of a dimension?

BECKY KEKULA: Exactly. Well, even how I said I wanted to be a doctor growing up, of course there's an accountability factor. I didn't want to do all the schooling that was required of it. So that's why I did not end up pursuing that path. But how nice would it be if a role could be written just as a doctor and the casting director can have an open mind and say, “I'm going to challenge this. And someone with a disability is going to come and audition because there's nothing that should prevent them from being able to be a doctor.”? And then that also adds a certain dynamic to the character without it even having to be written in, because it shows the different accommodations that someone may need, say, if it were to be a person, would Dwarfism playing a doctor, maybe they have a step stool in the operating room.

And it also shows that dynamic between the patient and the doctor and patient finding ways to adapt, to meet the needs of the doctor and vice versa. acting one of those things where it's, it's not who you are, it's what you can play. So why can't people play things that they aren't in real life? But that has a reverse effect too. People with disabilities aren't even able to play themselves, nevermind being able to play other characters. But people without disabilities are able to play any type of character, including disability. So I think it's still up until this point has to be written into the role description and until we allow for people to have any opportunity. But there have been some casting directors more recently who've worked hard to challenge what may be seen as the right person for a doctor role.

I had a friend who was friends with someone else who was not a wheelchair user. And they went to an audition and the casting directors basically said you're hired. And the guy who's not the wheelchair user who was hired, challenged the casting directors “Try to find as many wheelchair users as you can find. And then come back to me and let me know if I'm still right for the role.” And I think it takes that even though someone's about to lose a job for there to be more people challenging. Did you check all your bases to see if I'm really the right one for the role?

So the entertainment industry focus more recently, especially with all that's going on in the world has been people of color and women. I think there's been a strong advancement when it comes to that. So now it's just taking it those step further, and you know what, half these characters may even have invisible disabilities, but if the story's not out, we don't know that they do, but I think hopefully that'll challenge the way for the future.

MIKE SPEAR: So you brought up RJ Mitte who is great. What other actors are out there with any kind of disability that you think are lesser known that people should really pay attention to?

BECKY KEKULA: Mark Povinelli, he's an actor who is a little person who is the president of the Little People organization. Danny Woodburn, he was on Seinfeld for many years. Maysoon Zayid is creating her own sitcom on ABC and has also been a comedian for many years. Kurt Yeager. He has a limb difference and he's been on different motorcycle shows and has done a lot of motorcycle racing. This lady, Eileen Grubba has been making a lot of waves and Daryl Chill Mitchell he's been on NCIS New Orleans. Robert David Hall has been around for many years. He was on CSI. Katie Sullivan, someone who has limb differences, she's been acting for a while and plays specifically, there are just so many amazing people that need to be seen. 

MIKE SPEAR: It seems like you and others have had an impact. I mean, you just rattled off a whole bunch of people that are creating their own shows and giving performances. I would assume that would have been a shorter list 10 years ago.

BECKY KEKULA: So there's definitely been progress. But unfortunately there were statistics in the GLAAD Where We Are on TV report, which tracks LGBT inclusion, but there is one page or two pages on disability representation in TV. So it's done by like the Nielsen ratings and all those like compiling all the characters on TV and how many are played by people with disabilities. They said that I think about 3% of roles in Hollywood portrayed disability, meaning the description of the character has a disability. But of the 3%, 85% are played by those without disabilities. So it's like more than three-fourths of the characters that exist that say disability are still portrayed by those without, so we've made progress but we’ve got a ways to go.

MIKE SPEAR: There’s a ways to go, yeah.

BECKY KEKULA: But I wish that we could have more storytelling, and that comes from people being vulnerable and willing to share their stories and relationships to disability in some way. So I think what I've enjoyed the most is that even if I can't share the exact same lived experience, at least finding one other person that person can talk to so they can share that together because it doesn't just have to be me to be the only expert in and helping them feel better about whatever it is they're going through. Like, find some of those people. Like I was able to find a little people organization so you can learn together how to navigate your differences.

It was interesting because we do at the organization work with big entertainment media companies. But I feel that when they're thinking about disability and inclusion work, they're still thinking more of like the corporate type positions. And they're not necessarily thinking about this. Yeah. I think they're not thinking of people with disabilities and creative roles. So we are working with a lot of major corporations and they are all working hard to hire more people with disabilities, but it's not necessarily thought of as a creative field opportunity.

MIKE SPEAR: So what is DisabilityIN? Give us the elevator pitch.

BECKY KEKULA: Yeah. So DisabilityIN is a nonprofit that works with major corporations to assist them when they're trying to include people with disabilities in a meaningful way in their workplace. We really want to make sure that companies are thinking long and hard about including people with disabilities in every part of their work stream. And they can do that by engaging in tools like the Disability Equality Index, which is a benchmarking tool that I manage. And we've been able to do research that proves that companies that are disability inclusive are doing better financially. And those companies who do engage in the index, it's a self-assessment, are more motivated to hire more people with disabilities. But hopefully we are thinking about them also hiring people with disabilities at the same time, as they're trying to do the work because people with disabilities can also be the solution to the problems they're trying to solve.

And we do have a program called Next Gen Leaders, which is a mentorship program for students in STEM, finance, or business fields, where they go through this mentorship. These students have disabilities, they go through this mentorship program and then they're hired at our conference by our corporate partners. So our corporate partners are over 200 Fortune 1000 scope companies who are making big waves in America and the world. And they're all eager. Even direct competitors are eager to work together to solve the unemployment rate problem. Unfortunately COVID has brought us backwards. But it's been a journey.

MIKE SPEAR: With the Disability Equality Index is that something you worked on developing or did they have that? And they brought you into to run with it.

BECKY KEKULA: I've been with the organization for three years now and the tool's been around for seven years. So all of the programming that DisabilityIN produces is influenced by what our corporate partners asked for. So our corporate partners, I said, there's a tool out there for LGBT inclusion, which was done by the Human Rights Campaign called the Corporate Equality Index. And they asked if we could create one for disability inclusion. And we said, “Why not?” So we put together a partnership with the American Association of People with Disabilities and we were able to build out a committee, which we call the Disability Equality Index Advisory Committee. And they were able to come up with the questions. It started as a pilot in 2014, and now it's in its seventh official year. And they really just measure what are companies doing when it comes to culture, leadership, accessibility, physical and digital.

A lot of companies think about digital accessibility. They really want to attract their outward facing clients, but they forget what if someone who was blind or had low vision worked at their company internally. And then the employment practices talks about benefits that could be helpful for people in the disability, community recruitment strategies, making it known that you're willing to make an accommodation from the application to the onboarding, to the promoting process of people with disabilities, making sure that companies are actively engaging with nonprofits to recruit people with disabilities. 

One of the biggest challenges we see is that universities are using their career center to support people when they are looking for jobs coming out of college. But they're not necessarily thinking about collaborating with the disability services center. So students have accommodations from the disability services center throughout their college career, but then once they graduate, unfortunately they don't have that support because the career center doesn't think that there's a place for them there. So it's getting employers to even challenge the universities that they do recruiting from to say, are you also submitting students with disabilities for these jobs?

MIKE SPEAR: It's interesting that the index came out of a client need or client requests.

BECKY KEKULA: Yeah, I think it was, they, so many employers are saying, “We want to hire more people with disabilities. We just don't know how.”

MIKE SPEAR: You mentioned, sometimes the people that don't believe that there is an issue are the ones that need to hear the message most, which is true what's, what's that balance? Like, how do you, how do you spend your time and energy? And, and what's the emphasis on working with companies that are thinking this way anyway, versus converting some organization that may think this is just not important to them.

BECKY KEKULA: I've had companies say to me, like, “We're just not ready to get into that space yet.” And then I'm like, “You should be ready cause you're not doing well in this space.” And if you want to, even if you're really focused on a network-facing, customer-facing organization, in order to take care of your customers, you need to take care of your employees. And also I think customers would appreciate knowing that you have employees who look like them or have similar lived experiences. And usually it's those companies who are thinking, Oh, we're going to try people of color, women, even LGBT space before we dive into disability instead of just doing it at the beginning with everything else. 

So it's still considered kind of that other category. And isn't really part of the D&I strategy. But even those companies that don't have a D&I strategy, they should be thinking about disability because every organization, every human being is impacted by disability in one way or another. It’s one in three American households and at least one person in someone's life has some type of disability. So I think they just think that it's expensive. It's a gray path to go down and they just don't want to keep open minds about how maybe the strategy is going to be really similar to how you handle everything else. But you just need to acknowledge that you're willing to be inclusive.

MIKE SPEAR: I think there is a shift going on anyway, but you see this a lot in the CSR where companies that do fundraising or donate a percentage of proceeds or something like that, that's fine. That's sort of better than not doing it, but the direction is really towards making social impact part of the DNA of the organization. It sounds that you're facing a similar or trying to encourage a similar transition here. Do you have anything to do with the fundraising side or you're pretty much specifically on evolving the index and advocating for it?

BECKY KEKULA: The index is an, there is an administrative fee for companies that aren't corporate partners of our organization. So that's kind of the seller if they don't want to become a partner, but I've never really been great at that part of things. And I know I shouldn't sell myself short, but it's hard asking for money. I like putting together panel discussions or like if it happens to be at a fundraising event, I'm open to supporting in that way. Or even I helped start a film festival and it was run by a nonprofit that we worked hard to raise money to build out the film festival, but I was more one of those people who would help with the in kind sponsorships. Well, it kind of relates to also, even with speaking, trying to come up with a speaker's fee, like it took me a while to get my first paid speech. And it's one of those things people don't talk about enough. 

MIKE SPEAR: How do companies bring themselves in line with the index? If an organization is interested in this, you mentioned some of the criteria, but if you're going to be making changes in the workplace how should an organization look at that? You know, what are some of the things they need to do? And how do they roll it out to employees to make sure everyone is trained on that stuff and it's accepted by the entire workforce?

BECKY KEKULA: It usually takes someone who's in an HR or D&I position who has a personal invested interest to really want to take the time and be thorough. Like there could be a check the box process where people like we do this, this, that, that, but really to get people to be invested and engaged in wanting to improve, it takes a champion to lead those efforts and then bring together a cross functional team internally, which is usually the employee resource group related to disability because they all have some connection to the space. It's meant for companies who have 500 employees or more, but those who are smaller can still download the questions on our website and start applying things right away where they see fit. 

We just don't think that those smaller companies have the infrastructure to be fully invested in making long-term sustainable change when it comes to all the different questions that we ask, because they may not have things built out quite yet, or they may look different and it's hard to compare a two person company to a 50,000 person company. So we have to kind of scale it at some point, but it doesn't mean that people shouldn't be doing the work no matter what the size of the company is, but it really is up to the company to decide how committed they want to be in order for it to really have meaningful effects

MIKE SPEAR: For employees with known apparent physical disabilities or differences, some of the remedies for those, I think may seem a bit more obvious. How would a company go about uncovering while protecting privacy and being sensitive and all that like uncovering, like what other things might need to be done for folks that may have challenges that are not obvious at the outset.

BECKY KEKULA: So think it's equally the responsibility of the candidate to when you look at a job description that you're applying for, can you actually do all of the things that are described in the job description, especially if you have a non apparent disability. So if you are saying, yes, you can do all these things without an accommodation, then maybe choose not to disclose, choose not to say that you have a disability .But what if there gets to be a point down the line where you need an accommodation or you're in excruciating pain and you have to miss a week or month, a year of work. And you're worried about disclosing. Maybe if you disclosed early on, you could get that support early on. But I think there's a lot of fear of the opposite happening where you won't get the job if you say it too early, but I think you have to figure out how to find someone you can trust early on so that it doesn't come out later and bite you in the butt.

But then with physical accommodations or physical disabilities, most accommodation costs are less than $500. So I think there's a big fear that, Oh, someone with a physical disability comes into the office. There's a liability. There's not the accommodations that they need right away. It's an assumption, but they may just ask, “Can I work from home in a remote accommodation?” And maybe it isn't possible right away, but downline, maybe it could be something, or now we know that it's possible for people to be successful working from home, or for me a stepstool for $10. Like, but there are times where I may even just have my own in the car and bring it with me if needed. So I think there's this assumption that there are all these barriers and it's preventing them from hiring and allowing people into their workplace. But I think it starts with making sure that your space is accessible. So there are barriers even in the interview process.

MIKE SPEAR: Yeah. Well, and as you've said in some of your other interviews, you were doing this during COVID, everybody's asking for accommodations right now. Yeah. I wonder how much money companies have spent on making sure people have the internet or webcam, stuff like that.

BECKY KEKULA:  And even like, if you think of like on movie sets too, that hesitation of hiring, like child actors need to have a certain amount of schooling that has to be paid for, if you were to bring animals on set, there would be certain requirements, like all these accommodations they assume they need to have, there are other costs that are equally as costly.

MIKE SPEAR: What have been some surprises throughout your career? You know, whether, I guess whether it was in the media or now with, with DisabilityIN, some big things that really surprised you. So some big lessons learned from big challenges you've had in being successful in these roles.

BECKY KEKULA: I think what I'm doing now is, so the reason I chose to make the switch three years ago, so I just hit my three years at the organization. I was working at the Actor’s Union and one of the reasons why I made the switches, I felt a different type of energy in the room. When I came to the conference where all these corporations were coming together to talk about disability inclusion. And big companies coming together and not being afraid to talk about it where it's still kind of a hide-behind-the-closet feel in the entertainment industry. And I think that they don't want to talk about it. And it just kind of brushed over to the side because it's all, image-based where this was real people coming together and high level jobs as these big corporations, direct competitors coming together, wanting to solve the unemployment rate problem together because no company can do it alone. So I think what I really appreciate about the space is that people can let their guards down. And that allows me to then bring more of my full self to the work.

MIKE SPEAR: Have there been disappointments or what would you love to be able to accomplish in your current role that you haven't been able to yet?

BECKY KEKULA: It's tough. Cause I started working at a company that was just this giant well-oiled machine in the entertainment industry that nobody said “No” to. So I think it is challenging kind of working on the other side and in wanting to have these big ideas and trying to run with them and still getting the support to go after them. But they're just harder to accomplish when you don't have the resources that you do in a big corporate space.

MIKE SPEAR: What do you think needs to be done to bring more resources into the nonprofit sector, and this specific cause area?

BECKY KEKULA: Probably getting more guidance and feedback, just that constructive feedback that I talk about, from companies on how we could be more effective, because I think if we are more effective, then I think we'll see more results. And sometimes it's just, we don't engage as much as we could it, but it's also equally the responsibility of our partners to tell us what they want and how we can assist them.

MIKE SPEAR: Do you guys do any direct, like grassroots fundraising or is it all client-based?

BECKY KEKULA: Just corporations and it's a lot of people switch over from one company to the next. So that's kind of how we build new relationships.

MIKE SPEAR: That makes sense. If not for word of mouth, how do you attract new business? 

BECKY KEKULA: So our conference is a big attractor. Every year, every July, we have a conference where it's four days, people come together from all over the world. We'd had a virtual this past summer, it's usually in-person. And because of all the programming that they can get to attend our conference, you can be a partner, or not be a partner. I think just the content that people are able to get and then repurpose and share with their organizations leads to more and more discussions. I think people enjoy the storytelling piece when people who work in big positions at companies come out and share their relationship with disability, you see the more human side of things. And it is interesting because we are different than your grassroots, nonprofit type organization really focused on helping business do better.

MIKE SPEAR: How did you adapt to COVID this year for the conference specifically? Was the format and content changed, and how do you see what lessons learned came out of that? How do you see doing that again next year? Assuming that we're still going to be dealing with the pandemic?

BECKY KEKULA: I think we learned that we should always have a hybrid component. So then there's and there's content that we can share throughout the year. And then I would also say that we learned to record sessions ahead of time because you can't always rely on the technical issues that could come up. So that was something we learned before we even produced it. I think going into this year, it'll just be, we don't, we don't know what it'll be, but it'll be just, you're more prepared after going through both experiences. The content was the same, but there was some COVID-specific content and how it has impacted. And of course in everyone's remarks, it kind of came up in some way or another

MIKE SPEAR: Out of curiosity, how have state and federal governments been  as employers? Are they good about being inclusive or not?

BECKY KEKULA: We've heard a mix. I get emails from people who are unhappy, but the other thing is you don't always get both sides. So it's hard.

MIKE SPEAR: What's the role of government, generally, in disability inclusion, do you think, is it funding specific programs? Is it building curriculum? 

BECKY KEKULA:  So even with the Disability Equality Index, we pay very close attention to bills and laws that are passed, just like that relate to employment but we purposely work with federal contractors but we do not work with government entities. Especially when it comes to filling out tools like the index. So we keep it separate just in the way that we advise corporations to advance inclusion...But there are many countries where they say if you don’t hire this many ppl you have to pay a fine. But I would say it helps us because disabilities are more important to certain administrations in the government in different ways...if it’s inclusive of people with disabilities hopefully that will motivate companies to make disability part of their diversity strategy.

MIKE SPEAR: Anything I should have asked you that I didn't anything else you want to talk about?

BECKY KEKULA: Just the general message that it's hard to find that balance between advocacy and being a representative for the organization and not wanting to come across as self-serving. And I try very hard not to do it. And it's, and it's hard. It's just hard in general to be an advocate, share your story, be vulnerable, but also try to support people in the best way possible. And that's why I really appreciate those moments where I could connect people with similar lived experiences and know that I can't always be the solution to someone's problem. And I think what a lot of people need to figure out how to address is if you don't know the answer to something it's not the end of the world, but if you can try to search out the answer or find that person who can be a resource that's OK too. Like we all need to work on this together and help each other out.

MIKE SPEAR: That's well said. And what has it meant to you personally, to have been able to spend your career advocating for something that is also so personal to you?

BECKY KEKULA: I think about what my life would be like if I wasn't born with the difference, like when I just be this boring person just going through the motions of life? I don't know. Like, I'm sure it would be different. It would be because my parents are a certain way and they were still that way even before I was born. But I think all of our lives were impacted in one way or another. I wish there were more people willing to do this work. So then I don't feel the weight as much on my shoulders, but I think it's important for people to know that it takes work. I didn't just get here. Like I sent out those thousand resumes to even get my first job. And then for speaking engagements, I did a mass mailing to all the schools in Massachusetts. And I got one response out of the thousand letters I sent out and I continued to just put myself out there. And I want people to understand that it's important to do the work too and stay dedicated, but the minute you stop having passion, stop doing the work cause it'll show and it'll affect how your message gets to people.

MIKE SPEAR: That's a great point, too. What advice would you have for people that are looking to get involved in the diversity and inclusion space, but just have not, or are in other careers or just have not done that yet.

BECKY KEKULA: Figure out what it is that you would be able to offer that someone else can’t, cause I've heard a lot of people say, “Oh, I want to work in this space.” Like I've been doing this stuff for a little bit, but like really be able to substantiate your answers or go get the experience and read a book that could help you get more aligned with those opportunities.

MIKE SPEAR: What terminology do you hate and which terminology do you want people to use?

BECKY KEKULA: Never call me a midget. It's the most offensive term for the Dwarfism community? Unfortunately, there will be people that may be OK with it, but it may be related to their upbringing and how they were addressed by family members in the past. I'm okay with Little Person I'm okay with dwarf, person with Dwarfism. People often talk about person-first language. So that's why I kind of use person with Dwarfism, but I'm okay with Little Person. Call me by my name first. And I tell them to call, call, call someone by their name and then you'll get to know them. And they'll show, they'll talk to you about the terminology.

MIKE SPEAR: What’s the path not taken for you? What career would you be doing now if you were not in this space?

BECKY KEKULA: I think like, I guess it would still be disability related, but just like adaptive sports specifically. Because I haven't spent a ton of time in that world, but I'm always fascinated by the fact that people who acquire a disability, and sometimes it's a sports-related injury, they all of a sudden assume that they can't participate in their favorite sports .But if they just do it in a different way, they can still. So to be able to watch that transition and be part of that experience of someone's still being able to participate in something they love, even if they've acquired a disability. I think it would just having more of a lens in that space, whether it was an instructor. And I am not quick to be an instructor, but I guess I would have had the proper training and maybe I would have just taken sports more seriously if I wanted to then pursue that to be a subject matter expert.

MIKE SPEAR: What do you think the most important cause for humanity to tackle right now is, and why?

BECKY KEKULA: Anything with children, they're our future. When I was in Kenya, there was a strong population of children, it actually happened to be World AIDS Day while I was there. And there were all these children out on a field. And I was just looking through all the children and wondering how many of them actually had a home to go home to in. Especially even when it comes to adoption in the Little People Community outside of the U.S. it's pretty problematic, especially places like China, where there are kids who are left on the streets, because if they're not that perfect child, the family doesn't want to take them on. And it's the orphanages who then take them on. And the orphanages consider that those children are unadoptable until someone finds their files and thinks they're adoptable. That's when they get nourished. So I think just children and adoption, because that then could lead to them having a supportive family who can give them hope for the future.

MIKE SPEAR: 20 years, 40 years, 60 years from now, when you're ready to retire, what would you like to have accomplished during your career?

BECKY KEKULA: I like the idea of someone going through the emotions of the different interviews and still not giving up. And maybe they could say like, Becky didn't give up, so I'm not going to give up. I would like to just, and even be that influence when parents are in the delivery room of there's hope for my child, because Becky did OK.

MIKE SPEAR: And then lastly anybody's listening to this, how can they themselves get involved and support what you're doing?

BECKY KEKULA: BeckyMotivates.com has all my contact info and social media, and I am happy to be supportive to anyone who wants to help make this world a better place.


MIKE SPEAR: That’s our episode for today. Thanks so much for listening. And Becky, awesome to catch up and hear your stories. If you want to learn more about Becky and her work, check out www.DisabilityIN.org and check out the best places to work for disability and inclusion. And find her aslo at www.BeckyMotivates.com where you can read more about her story, contact her about public speaking and personal appearances, and read her blog. 

We hope you’ll join us next time when our guest will be Tim Kachuriak. Tim is the Chief Innovation and Optimization Officer at NextAfter, a cutting edge fundraising research lab and consultancy that helps businesses and nonprofit organizations better help customers and inspire donors to give generously. Tim shares great stories and tons of insights about how nonprofits can raise more money online. This is chock full of strategies and tactical advice you can put to use right away. You definitely don’t want to miss it. 

If you enjoy the show, please leave a review or comment wherever you listen to podcasts. We love hearing your feedback, and positive reviews are one of the best ways you can help us reach new listeners. 

Cause & Purpose is a production of Moonshot.co. On behalf of myself, Becky, and our entire team, we thank you for listening, and look forward to speaking with you again soon.

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More about

Becky

:

Becky Kekula serves as the Disability Equality Index (DEI) Director at Disability:IN. In her current role, she’s responsible for managing all things related to the DEI. Disability:IN is a global organization driving disability inclusion and equality in business. More than 270 corporations trust Disability:IN to activate and achieve disability inclusion across their enterprise and in the broader corporate mainstream.

Credits:

Cause & Purpose is a production of Moonshot.co
Postproduction by Lisa Gray of Sound Mind Productions
Original Music by Justin Klump of Podcast Music and Sound

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Cause & Purpose Podcast

Moonshot.co is home to Cause & Purpose, a podcast about leaders in the social impact sector. Hear their stories, successes, failures, and lessons-learned from lives spent in the trenches, tackling the world’s most important challenges.

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