Rachel Byrne:
Hi everybody, and welcome to CPF Live. I am so excited and thrilled to be bringing you a panel of absolutely extraordinary people this evening. We have the amazing office of Pure Grit, Lily Collison and Kara Buckley. And then we also have three people that are actually featured in the book, but very close friends of the foundation and actually of mine ,that I am actually very, very excited that they're joining: Jerron Herman, Cathryn Gray, and I Ila Eckhoff. Welcome everybody.
Cathryn Gray:
Hi.
Jerron Herman:
Hey.
Ila Eckhoff:
Hi Rach.
Rachel Byrne:
So for those of you who haven't seen or don't know, Pure Grit is a collection of 19 stories and it was published and written by Lillian and Kara and released just around the Paralympics this year. And so we really wanted to obviously get everybody on board today and talk about the book and then talk about some things that the book really brings up and what it means to all the different panelists. But Lily and Kara, I'll ask you the questions first. What made you want to write Pure Grit? What brought the two of you together?
Lily Collison:
Go for it Kara, if you'd like.
Kara Buckley:
Okay, so last year, Lily and I both read a book that made a big impression on us. It's called Struggling For Serendipity, and it was written about another person who's featured in the book, Beth Kolbe. She talks about her own experience of seeing a billboard where she saw a woman in a wheelchair who goes on to Harvard. When she was a teenager, she was often told what she wasn't able to do in life and she wanted to decide for herself what she was able to do. What that billboard did for her is reframe her opportunities in life and she actually went on to Harvard, herself, and then to Stanford and now practices law in DC.
Kara Buckley:
What that book taught Lily and I is the value and the importance of role models. As Lily and I talked about the book and explored things together, we actually decided that we thought we wanted to write a book about role models so that we could identify people like the three of you here with us today, who we've been so lucky to interview, but to also shine a light on what else is possible in life to reframe that discussion around limitations and more talk about opportunities.
Rachel Byrne:
So to ask you this question. Why did you want to have these role models have disabilities? And I think this is a really important piece of why this book is so special and why it's so important.
Lily Collison:
Well, I'm the parent of a boy, an adult now, who has cerebral palsy. I had written a book about his type of cerebral palsy, a book about spastic diplegia, and when writing that, one of the pieces of research that really had a profound, I can remember where on the page where I read this in this particular paper, where it talked about that research showed that people with spastic plegia, which is largely a mild to moderate physical disability, largely without cognitive impairment. Yet they were struggling with participation. They were much more than the typical population unemployed, much more not in relationships, and many more not having children. And that really bothered me because if people with a mild to moderate physical disability, largely without cognitive impairment if they were struggling with participation, well I worried then.
Lily Collison:
And there were so many shining examples, like Jerron, Ila, Cathryn out there. And we wanted to shine a light on all these great stories just to show what is possible, because oftentimes you can't be what you can't see. The people in the book, they're from a whole lot of different fields and just to tell all these stories, because seeing is believing.
Rachel Byrne:
Yeah, I think that is so important. And I love actually that the book covers so many different individuals, but who are in so many different fields. So all different industries and Ila, obviously you are a pretty extraordinary human being and someone very close to me, but you are a Manager and Director at BlackRock and so your day job is pretty intense. You are in the banking industry and I think it's important to shine a light on banking and the financial services and what your role has played in that from both being a woman and having a disability. And the role model that you are is extraordinary. Did you have any role models when you were younger that got you into banking?
Ila Eckhoff:
There really wasn't anybody like me growing up, which is why I was pretty excited. How I met Lily is I read the spastic diplegia book, I think because of you, Rachel, is where it all started. And I read the book and my head almost exploded because I'd been looking for that book. I have cerebral palsy from the hips down. I actually have spastic diplegia. Now, before I read Lily's book, I didn't even know that's what my CP was called.
Ila Eckhoff:
As I read the book, I reached out to Lily and started asking her some questions, giving her some notes because my head was exploding. I'd been looking for that book for three or four decades. And then through those conversations with Lily, she told me she was writing another book and would I be interested in being interviewed? And it's really pretty amazing to me because when I look at all the people that are in this book, I mean, I've joked with Lily a whole bunch of times, how in God's name did you pick me to be in this book?
Ila Eckhoff:
But I think my focus around disability and particularly because I sit at the largest asset manager in the world. We launched a disability network about four or five years ago. We called it the Ability Network because like Lily's book, I'm sick and tired of talking about all the things that people with disabilities can't do. I want to talk about all the things that people with disabilities can do and we have the same dreams, the same hopes, the same desires as anybody else.
Ila Eckhoff:
And to Lily's point, people with disabilities are underemployed. They're either unemployed or certainly underemployed and it's about 77% unemployment. What I love about the book and the focus for me is to let people know that you have to be bold, be brave, and go after the things that you want. And what the book shows is 19 people with physical disabilities that, through a combination of, whether you call it grit or you call it something else, don't let their physical disability impede their success. Right. But it's a lot of work and you've got to push and be bold, be brave, go get it. That's what I always tell my kids and it's no different.
Rachel Byrne:
Yeah. I think it's an extraordinary place to be and this is one thing that I love about the book is that it doesn't just tell about all the successes as well. It really tells everybody's story and what they've gone through and where they're at, because not everyone is at the end of their story and I, that's such an exciting thing-
Jerron Herman:
I hope not.
Rachel Byrne:
And not saying that you're at the end of your story either Ila, you've got wonderful things ahead of you as well. But Cathryn, you really are at sort of the beginnings. You're in your first year of college. You are literally at the start of say, your career. To be seen as a role model in already, obviously I think- and you deserve that. For those that don't know, Cathryn is an adaptive athlete and she is the first female adaptive athlete at the University of Michigan. She's also ranked number one and number two in the world, in her classification for javelin and discus. And so you're an extraordinary athlete, but to be seen as a role model, at your age, what does that mean to you?
Lily Collison:
It really means the world. I didn't really have anyone besides my family growing up that I could look up to that had CP. To be able to grow in to the title "role model" means so much. Being a woman with a disability is really hard. I remember being younger and being like, "Where is everyone else? Hello?" And being able to give back to the community, especially with women with disabilities and be that role model that I never got to have, it means so much because I get to inspire people and tell them that they're not alone, which means so much because I feel like CP can be very isolating when you don't have people to look up to. And that's why I think that Pure Grit is so important because here is a whole book about representation and what you can be and stories of triumph and grit and I just think that has so much power.
Rachel Byrne:
I love the word power. And if anyone has had the opportunity to watch Jerron dance, which I have been so fortunate enough to see on many occasions, there is definitely power to it. But there's obviously exceptional grace and talent and everything else that goes with that. You really have reshaped and created your own genre when it comes to dancing. What do you see is your biggest piece and what you are offering to this book?
Jerron Herman:
Wow. Well, thank you for that. First, I'll say a short visual description- dark skin black man with blonde hair and I'm wearing a pink shirt today. I would say that my biggest contribution to this piece is really validating the fact of, I guess trying it out. There's a way in which I became a dancer quite spontaneously, but as I was talking to someone earlier today, even it was really extraordinary for me to figure out based off of non-disabled and typical training standards I was fitting into how dancers are BR and made already. And so I was very curious about how my body, my cerebral palsy body, could then translate to a typical non-disabled dance body in various ways.
Jerron Herman:
It really, for me, is about being authentic in your curiosity and not allowing anyone else to deter you from that. Right? I think parts of this book are about a group of people who are really genuinely curious about what makes people tick and what makes people move. And I just think that's what really fuels a lot of the change and the progress that we actually need. It's what keys us into what we want to know more of and that curiosity is really important to me.
Rachel Byrne:
Yeah. I love that and I love this idea of what does it mean and where does it end up? And I think one of the wonderful things that Lily and Kara you both do as authors is you don't force a message on the reader. You really are allowing them to take in these stories and meet, I suppose, all the individuals who are part of this book and allow them to take away their own takeaways from it. You're not saying this is how you should feel, this is how you should think. And I think that's a really important piece. And I know when you were writing these, how did you even select the storytellers? Because obviously there is a phenomenal amount of individuals that could be in this book. I am so glad that you've picked obviously the three that we're speaking with today, but how did you select them?
Lily Collison:
Do you want to go there, Kara?
Kara Buckley:
I'm happy to. I think what was amazing about writing this book is when we wrote a wish list, everybody was so gracious with their time and said yes. And I'm still blown away how lucky we got. We had one person who could not do it because they were writing their own book, but I am just in awe and so appreciative that we were able to get time, the three of you and the other 16 people that we interviewed. Lily and I, we talked. We were very deliberate in talking about representation across different life experiences, different disabilities, different industries, because we thought that would create a richer narrative for the reader to really understand the depth and the difference between different life and disability experiences. And we did try to be really deliberate about that. And Rachel, we got really lucky with you and your team's help to get some introductions as well, which were critical to the formation of the book. But Lily, feel free to add onto that too. I think we were so grateful.
Lily Collison:
Yeah, some people we knew ourselves. Some, Rachel, you introduced us to some people and then we cold contacted a number of people and was really shocked. Cold contacting, like Tom, Judy, these people, but really we were blown away. We would contact a few and then we'd see everybody saying "yes", that's what shocked us. We were really humbled by people saying yes, that everybody was so gracious and not only right through the project from start to finish, like here tonight - people on the panel here tonight, like Cathryn, Ila, Jerron here, and everybody's really supportive of the book from start to finish. It became almost community, the book itself, so that was what was fantastic about it that everybody was very generous.
Lily Collison:
And I suppose, in a sense, because it was a pandemic, we could interview people over Zoom. The pandemic allowed us, I think we've seven different countries represented in the book from Australia to Brazil, to Iceland. That was fabulous that we could get a good global spread, but I think, while the pandemic was so hard on so many levels, it actually allowed us to write the book, to interview people over Zoom.
Lily Collison:
And I should add, just in care, if I'm allowed to add this. Kara actually had a baby in the middle of us writing the book. Kara had a baby in October. So this being a pandemic project, she also was very busy with this very small baby. So it was a very intense project, but a great project.
Lily Collison:
I must say from start to finish, there wasn't a day when we were writing this book that I didn't get up excited about it. I can honestly say that and I could say the same for Kara. It was just such a joy from start to finish to do it. As I said to someone, I'd pay to talk to these people every day. It seemed like a privilege to talk with each, we got to talk to the people over Zoom, to talk to [inaudible 00:16:39] I would've paid for the privilege because we learned so much. And Rachel you say we didn't do any sort of summary at the end of the book that people could take what they wanted from the stories. And every different story, there are nuggets of wonderful information that people tell.
Rachel Byrne:
This is actually a question that I would actually like to ask. I'll ask, Jerron, you first. How did you pick and choose what you told? Because obviously you've lived an extraordinary life. You've got lots of different parts that led to where you are. Did you pick and choose, or was it just a natural sort of interview process and the story just got told.
Kara Buckley:
I don't know what it was, but Lily and Kara gave me permission to tell it all. And the depth of the questions, I was very taken with because it went beyond an introductory 101 basis. And I will say that this experience and maybe even a lot of the reason why people were so endeared to you both to interview with you is because of the ways that other texts that you created were perceived and were kind and were diligent. There's this precedent that you had because disabled people we love to research. We'll be like, "Who is this?" Go backwards, to really assess why.
Kara Buckley:
But in responding to the interview, I think that I was picking stories and qualities of my experience that would really elevate this life, the life lived in this disabled body. And that happens to be through dance, that happens to be through my family structure, the ways that I was raised as a kid, and how that transfers to my ethics as an adult. There's a lot of interconnecting things, but I think that also supports a disability justice ethic, which is about other things beyond mere independence or mere doing it. So yeah, the openings were great for that cross pollination, if you will.
Rachel Byrne:
I love that. I love that you felt you got the opportunity to tell your story in its entirety and with the depth and breadth that you wanted to. And I think that shows in the book. It really does. I obviously knew you before I read the book. And I must say when I was reading your story, and this is what I said to Lily after I'd read it, I felt like you were sitting next to me and telling it. I felt I heard your voice in all of it, which I think is really special because it would be very easy sometimes for the author to really put their voice in it. And I think that's commendable to both Lily and Kara, because I really felt like they stayed authentic to everybody. Now, Ila, obviously your story has lots of different pieces. If you were going to give one takeaway, what would that be from your story?
Ila Eckhoff:
To me, what makes this book so incredible is the absolute joy, to use Lily's word that she used about a minute ago, and the fact that we all really had an opportunity to tell our story in our own voice. And what makes Lily and Kara's writing so fabulous is that it's not their voice you hear. It's each of the 19 of us. When I read Cathryn's story, when I read Jerron's story and I've met him before to your point, you feel like you're right next to that person.
Ila Eckhoff:
I think the most critical thing that everybody needs to understand is that disability that each of us have, it's different for everybody. So the fact that all three of us can have CP, but it's going to be a different life experience for each of us, so disability is different. Everybody's life experience is different and it's just an element of who we are. It's not all of who we are. That's why I think the joy that comes through in the book, when we talk about success, everybody's success is different. So there are things that everybody's good at and things that everybody's not good at. Everybody needs to focus on the stuff that they're good at, that's how you're going to be successful. And if we could just give everybody this space to bring their full selves there, disability, non-disability talents, and the things that they're not good at.
Ila Eckhoff:
Because you can see my disability coming a mile away. I have spastic diplegia, I walk with a cane. From five miles away, you'd know I have a disability. But everybody has things and disability's an interesting dynamic. It will impact everybody at some point in your life. It may not come to get you until you're 95, but disability is the thing that goes across every dimension. It's completely intersectional across everything. So just give everybody the space to be a hundred percent of who they are and the world would be a better place, disability or not.
Rachel Byrne:
Yeah. I love that. I love the fact that it's really about thinking about connecting with people and that connection and what that looks like for everyone. Cathryn, you spoke about that as a younger teenager, you didn't have the role models that you would be hoping for and, obviously as you know, one of the first people to be in your place at college with a physical disability. For you, what would you like to see? What is next and what would you love to see if you are thinking about representation or accessibility? What's something that you'd like to see change?
Cathryn Gray:
That's a really good question. Being at college and being in the sports world with adaptive track and field and being the first female adaptive athlete in adaptive track and field, I really want to see more women get involved. I think that sports has just changed my life. Adaptive sports has really given me the space to feel seen and I think that's crucial for CP because we're all just so hungry to be represented. I really want to see more women get involved in adaptive sports and just go through the life changing milestones that I went through.
Cathryn Gray:
I've been able to compete for my college around the country and for the world on Team USA. And through that, more than the competition and more than the medals, I've also been able to be a better advocate for people with physical disabilities and just have more confidence. And I feel like CP is such a personalized journey of self-acceptance, but I feel like sports has really allowed me to be like, "This is who I am. I have spastic diplegia. I'm a woman. I'm 20 years old." But like Ila was saying, CP doesn't define me. I feel like that's been crucial with sports. So just reiterating, I'd love to see more women and girls get involved because it's truly a life changing experience and I want everyone to feel the love that I've felt through sports.
Rachel Byrne:
Well, the joy and the enthusiasm, and everything that you bring to the table, I cannot wait to see the successes that you have over the next few years, because it really is going to be extraordinary and you are a light to this field. And I feel like this is the wonderful thing and Lily, you mentioned something about feeling like family, and it's definitely something that I feel every day in my job. I am so fortunate to work with each and every one of you in different capacities and the love and the joy that I feel from everyone and the relationships that we have, is what allow us to do everything that we do every day. It's what allows us to be accepted on who we are and really strive for those successes. And I think you've captured that in this book and I don't know how you captured it in this book because I think sometimes I can't even explain it on a day to day basis, but you captured it in this book and it's really remarkable.
Lily Collison:
Good, good.
Rachel Byrne:
So last question for all of you... one thing that you can give our listeners, one sentence, one takeaway. What would it be? Jerron?
Jerron Herman:
Oh, I'm first.
Rachel Byrne:
I know I put you on the hot spot.
Jerron Herman:
No, no, it's great. From what we've talked about in this whole conversation, relationships are the life blood of change, I would say, and let's be really intentional and authentically curious about why we get connected.
Rachel Byrne:
"Authentically curious", I think we should have a slogan on a T-shirt that needs to be made, in pink, because you look amazing tonight, so let's do it. Ila?
Ila Eckhoff:
Sorry I was on mute. I really want to raise the profile of disability. There's a lot of discussion in the market today around diversity, equity, and inclusion, and I'd really want to focus and change the profile of disability. And when people talk about race and gender and diversity, I want to talk about disability. Because again, look, people with disabilities make up 15% of the globe. We are the largest minority on the planet. Our voices need to be heard. This book is a perfect example on how we can do that, but we all need to stand up and be advocates for people to have the freedom to express whatever they want to express- disability, non disability. We're all people, we're all in this together. And the more we're accepting of everybody's strengths and weaknesses and skillsets, the better off we're all going to be.
Rachel Byrne:
And I think that's amazing because it comes into that point of what we can all do. We can all, whether you are an ally, whether you're a disabled person, whichever it may be, we all have a responsibility to just have humanity. And how can we make changes within our own local environments? How can we changes within our friendship circles? How do we make changes within our family networks and at our workplaces? All of us can take action and I think that's such a wonderful thing and take recognition of that and go, "All right, let's do better. Let's think about what this looks like." And all of you shine a light on that every day, but I love that Ila, that's really amazing. Lily, what would you like to have as your one key takeaway?
Lily Collison:
I suppose just when you asked that question, I was thinking about it. I suppose the whole richness of life and diversity. The richness that diversity brings to life. Be it whatever, disability, gender, anything. It's just the richness, wouldn't life be very dull if everybody was the same? But to echo Ila's point though, disability was later coming to the table. And I think it's the one that came through in the book. Holly mentioned it. It got mentioned different times. Jerron, you made that point as well. But, in terms of the richness of diversity, disability needs to get more focus and to get more visibility.
Rachel Byrne:
Yeah. Let's all commit to that. I'm on board to get this train going and to make sure. And I think, as I said, all of us can take on that as a responsibility. It's definitely not just up to disabled advocates to make that happen. It is up to all of us to make sure that this conversation is one that we are hearing regularly. Kara, what's your...?
Cathryn Gray:
So one out of every three athletes that I work with on Team USA has a disability. And yet I think the way that we celebrate and talk about athletes is still very different. And so my hope is that, we talk about this in the book, but my hope is that we shift the narrative from being this idea of inspiring, or association with pity and we change that to power and strength. And so that we are celebrating people for the power that they bring, whether it's sports or dance or finance, the strength that people on an individual basis bring. And that we shift that from the stereotype and the stigma that I think still exists.
Rachel Byrne:
Yeah, definitely. And I think the piece to confounding that, as well, is that the story as well can have the hardships and sometimes that it is hard and Cathryn, you brought up before, but it's hard sometimes, at the end of the day, it's not easy. And that's part of the story as well. And what is your main piece as a takeaway? I know you talked about women in sport and particularly women with disabilities in sports, but what else would you like to see?
Lily Collison:
I was thinking about it as everyone else was speaking and I think my main piece of advice or my one sentence would be: don't be afraid to step out of your comfort zone in life, but also having a disability. I feel like having a disability, you feel like CP can hold you back, but it doesn't have to. And you can still have a full, and rich life, academically, in sports, social life. And I've met some of my best friends and teammates and stuff just taking that extra step and working really hard and going up to people that I don't know, and being like, "Hi, how are you?" I've been able to recruit people onto the sports teams and things.
Lily Collison:
So I would say don't be afraid to step out of your comfort zone because you never know where it's going to lead. And that's where the greatest connections will be. And also, it might seem nerve wracking beforehand, but I've only had good things come out of making myself uncomfortable and stepping outside of my comfort zone. I think that's my one piece of advice and my one liner.
Rachel Byrne:
And I think finding your people. I think we all need our people and our village around us. Those that hold us up when we need it and those that support us when things are hard. And I am so lucky that all the people on this panel are part of the CPF family and the village, because you definitely do keep us all meshed together and doing that. But I truly mean that. When we think about who we have around us and the people that are supporting us, if you feel like you don't have that, it is there and you can find it. And anyone who feels like they don't have it, reach out to us at the Foundation because we are one friendly bunch and we are always open to having new people join us at any time.
Rachel Byrne:
So I'd just like to say a big thank you to everyone. As I said, if you have not gone and read the book, Pure Grit, I highly recommend it. You'll get to hear the stories of these absolutely incredible three individuals and 16 more. It's so wonderful, it's an easy read. It is really a joy. So thank you all and I can't wait to actually, hopefully, fingers crossed in the near future, see you all in person