Title:
The Beauty of Friendship | Alycia and Kerri

Subtitle:
United by Disabilities, Strengthened by Friendship

Alycia Anderson: Welcome to Pushing Forward with Alycia, a podcast. That gives disability a voice. Each week we will explore topics like confidence, ambition, resilience and finding success against all odds. We are creating a collective community. That believes that all things are possible for all people.

Open hearts. Clear paths. Let’s go.

Welcome back to Pushing Forward with Alycia, I am Alycia and today’s guest is so near and dear to my heart. She is my college roommate. She is my very best friend. Her name is Kerri Vanderbom. She has got a PhD degree. She was born with spina bifida.

Her disability is very similar to mine. We will dive into that a little bit.

Our friendship has been one of the most important friendships that I have ever had in my life. Because you are the one and only friend that I have that is in my day to day. That looks like me, that we have stories that we can relate to down to like dating or how shoes fit, or how it feels to drive or go to school with a disability.

So, this sisterhood has been very, very important.

And your focus with a lot of your work has been in obesity prevention, adaptations for children and adults with disabilities. Maybe you could talk about that a little bit.

First of all, welcome Kerri so much. You have so much experience and expertise, not only from the lived experience as a disabled person, but you have studied it and implemented it and done all these research projects on it.

Kerri Vanderbom: Yeah, I think my trajectory of what I focused on really evolved because in the beginning, you know, at like at Chico State, it was about focusing on the… more so the individual, I guess you could say. So, you know wanting to address the issue of health and looking at why individuals you know, specifically, I noticed individuals with spinal bifida where, you know, you would see a lot of issues about overweight and obesity, especially at a young age.

And I was just really curious about that but over time and you know even at through Chico State and like working in different you know, sports and recreation programs with individuals thinking about our own experience that, that piece about advocacy and access to opportunities was always in the background. And I think happily evolved into more issues of access and opportunities and more widely not just overweight and obesity. Right. Because then there’s issues of mental health and so many other things.

So, it quickly evolved and so then for… I think the majority of my PhD and then into my postdoctoral work, it was really more public health focused and not the individual, but looking more at the population of people with disabilities and not just spina bifida, but anyone and everyone. Physical, intellectual, prior chronic, whatever it might be, older adults. And that is how it kind of evolved.

Alycia Anderson: What is the prevalence of obesity for people with disabilities?

Kerri Vanderbom: I mean, I would say it is in that 50 to 60% range and it could even be higher. Again, you know some disabilities, it is lower, lower prevalence and then some it is much higher. Spina bifida has, I would say probably one of the higher rates.

Alycia Anderson: And what I was also hearing and what you just said is focusing more on like the systemic issues of lack of accessibility and lack of opportunity.

Kerri Vanderbom: Yeah, yeah, absolutely. And you know, we call it like the social determinants of health.

And so, whether you know, it is a person with a disability or because of your race or gender. So yeah, we, we call it social determinants of health and it does… it comes down to more societal factors than those individual factors, you know and the personal behavioral change factors, right? So yeah, you know, access to even education, right?

You cannot improve your diet if you do not know what you are supposed to be eating. But then you… even if you know what you are supposed to be eating right when and again, this is where it was really important to focus go from.

Maybe it is important to focus on the individual. Well, but the realization that you also have to focus on the wider you know more that more holistic focus of the you know society.

So even if you teach an individual what they are supposed to eat if they cannot. If they do not have access to a grocery store that provides those foods and fruits and vegetables. Or whatever it might be, and in an affordable way. Or, you know, with affordable prices then and there’s… so you know, there is so many different barriers. And even if there is that grocery store, you know, does it have stairs to get up into it?

You know, we have this really cute grocery store, like two blocks from our house but it is very old. It is a little corner mom and pop shop, but it has stairs to get into it. So, my husband, who is also in a wheelchair, him, and I we are not…, we are not accessing that grocery store because of those stairs.

Alycia Anderson: Maybe you can enlighten our listeners a little bit about your disability, your path.

Kerri Vanderbom: So, I was born with spina bifida and I was… I would say I was born in somewhat of a milder case, my… with spina bifida it is basically a malformation of the spine, spinal column, and the spinal cord, where basically the… it does not develop properly. And so oftentimes what will happen. Is there will… the baby will be born with an opening along the spinal column and it can be higher or lower.

And of course, just like a spinal cord injury, if it is higher, you know, there is probably going to be more physical disability associated with it. If it is lower, you know, then there is less typically. And so oftentimes there with that opening like the spinal cord might be protruding, the nerves might be protruding and then so that is where some of the damage is done.

Mine… I was, you know, more fortunate. I guess you could say. So, it was my lesion actually had closed over. So, some of the damage that is done to the spinal cord and nerves was it was less than typical, but it did cause, you know, issues with bowel, bladder. I was not able to walk without like a walker and braces. You know, I could do that [walk with a walker or braces] and they were trying to get me to do that when I was very young… around, you know, four or five, but then my spinal cord tethered, which just caused… basically just caused more damage to the nerves. So, then I lost any ability to potentially walk without any equipment.

So then basically just have been a full-time wheelchair user from basically my I do not know toddler years.

Grew up in a wonderful family. My mom was a single parent. We were, you know, somewhat poor. So, I always say, and I think it is kind of true poverty kind of saved me because my mom was not there. I mean, she was there, but she was working a lot. And so, I was just running around the neighborhood with my brother and sister, like every other kid scraping up my knees, getting into trouble. Activity was a really important part of my life from a very young age and I grew up in a very small town.

I think there was only one other person, young person, that had a physical disability.

Alycia Anderson: I think you and I both have those same experiences of being the one and only kid with a disability in school, in our classes, and I think meeting people that are like you, having friends that you can bounce off of each other’s lived experiences that are pretty hard, whether it is bowel or bladder or dating or clothes or… all of it.

Kerri Vanderbom: Yeah, I one of the… this is… well… along those lines. It is to me… it is also really funny. You know, even in an adulthood, you know… I’ve… you…, I used to be really embarrassed. I mean, I think a lot of us are right? And I mean, I still am, right when we have, you know, to have to talk about poop and pee issues or when it happens, and it is in…, you know, it is in your pants and it is not supposed to be because we are adults and whatever.

But we were like talking to some friends who do not have disabilities and it was it… It is still just so funny to me… Getting to hear their stories about pooping and peeing their pants as adults. And I am like ohh it happens to you guys too.

Like what!?! OK, this is great. It is not just us.

Alycia Anderson: Right. Yeah, I agree… That is interesting to… like they are like… Oh yeah, that is me too. OK, great you have that problem. So, I love it.

I really want you to talk about Ability First and what that program is and your advocacy through that.

Kerri Vanderbom: So, Ability First Sports, it is a sports program that has been around Northern California for… oh my gosh, since 1985. It is a sports and recreation program that just provides the opportunity for folks to do different sports and recreation activities.

Whether you consider yourself an athlete or not, it originally started off as a… it was actually just a day camp for like a week-long. You know where you had to drive in and drive out, but quickly I think after the second year it became an overnight camp.

That is what we started off as for many, many years for youth. So, 7-8- to 18-year-olds and for one week they to come and live in the dorms at Chico State and during the day we would do a variety of different sports and at night we would do different recreation activities and all the participants have physical disabilities of course.

We have some that have co-occurring disabilities, right, but physical is the main one and then some have intellectual disabilities as well and all their coaches also have disabilities themselves. So that makes our program pretty unique.

One of the other unique parts of our program, besides being an overnight residential camp is that we kick parents and caregivers out.

So, we provide the day and night counselors and have nurses on staff and we allow parents to come in. I think what two or three different events, but really then we make them leave. Because we want the individual participants to get to really experience the experience to be had and grow, and we usually send these kiddos home, different people, more independent, more confident. Because they have had the opportunity to hang out with other kids with disabilities and have those bonding moments of all these things that we have in common, like you and I have experienced.

And then we realized that once these kiddos aged out of our program, there really still was nothing left for them in the community. So, we started a year-round program so it is for youth and adults.

Alycia Anderson: You’re listening to Pushing Forward with Alycia, and we will be right back.

[pause]

Alycia Anderson: Welcome back to Pushing Forward with Alycia. I am Alycia and today’s guest is so near and dear to my heart. She is my very best friend; her name is Kerri Vanderbom.

Kerri Vanderbom: So, Ability First Sports, it is a sports program that has been around Northern California since 1985. Currently what it looks like is in the fall, we do different programs like wheelchair basketball, wheelchair rugby, cycling.

During the Spring, we might switch it up. We still do cycling, it is a big hit. We have archery in the summer time and it actually just yesterday we had a water ski clinic. So, we skied about 10 different skiers, the families came out and hung out. And, you know, it is the private man-made lakes. So, they all got to just hang out on the beach. And play in the water while waiting and again, you know bonding with each other parents, caregivers, got to hang out. And it is just such a such a fun time.

Alycia Anderson: I just love the Ability First Sports camp. I was a coach with you there a few times. It is a beautiful experience, so if there are parents out there or kids out there that are interested in going away to camp and being active and making friends. Like it is definitely something to look into and we are going to leave all that information in the show notes.

Kerri Vanderbom: For those who might be listening that do not live in this area per say like then there’s other opportunities in other states. It is unfortunately not as many as there should be, but they are out there and I do think it is really important to get involved and check them out.

Even if people do not necessarily consider themselves athletes or they do not want to be associated, maybe you know, as a person with a disability, with sports, you know, because I have heard that, like ohh, you know, people always ask if I am a Paralympian, you know, just because I am in a wheelchair and they do not want to be associated with that. And I think that is perfectly fine.

So, it is, you know, finding another program or other groups of people or community that can provide that same… those same experiences and feelings, right.

Because it is not necessarily the activity, it really is the magic that happens in between all of the activity, right. So, it does not matter what it is. It is just having that opportunity to be around people you know with other disabilities so that you can learn and grow and just know that you are not alone.

Alycia Anderson: Right. And I think that is a really good segue to our experience that we just had together, which was Kerri and I had just attended a disabled women empowerment event called the Rollettes.

And this is an organization, a nonprofit that does this weekend every year where hundreds of women with disabilities. From, I think, the youngest there was like 5 years old to who knows any age can attend this event.

And it is all about creating community within a women empowerment standpoint and they do dancing and hair braiding.

And so, this event I was invited to be a speaker and I of course was like Kerri, I am going to this woman empowerment weekend. Will you come? And let us go dance together.

I was really excited not only to speak, but to be an attendee, to be around a bunch of women with disabilities, and there was some pinnacle moments for me… and I want to hear what one was for you, but… the teen talk day, when we… when they had me sit in that big circle with all those girls.

You know, I told them about my path a little bit, but then one of them specifically was… what do I do when my teacher does not include me? How do I convince them that I am able to do whatever… that activity was?

So, what is the answer to that, Kerri?

Kerri Vanderbom: I do not know if there is a great answer. I mean the system has to change. I mean, hearing some of that… well it really just shits me because you know it has been… I do not know how long has it been since we have been in high school, right?

And like, and things have not changed like it really. It really shits me that we have these laws in place that we have more awareness of, you know, inclusion.

I do not know why it has not changed. And it sucks because, you know, like in that situation with that young woman. It is like, alright, she is in a situation where clearly the teacher does not get it.

So, there has got to be advocacy and you know, sure, some of it needs to come from that, that young woman, but some of it also needs to come from adults, whether that is a parent or caregiver or someone else.

Alycia Anderson: When I think like you said, is a good point. If you are in a position of power or leadership. It is time to start to advocate and challenge the status quo. It is not up to the 14-year-old girl that wants to go to camp with the other students.

It is up to leaders to look through a new lens and start to advocate louder, to challenge the status quo, to check their own biases at the door to look through a creative lens of how to make things and adapt things to make it possible.

Kerri Vanderbom: Yeah, a lot of times too. It does not take that much to make some of those adaptations.

It does not take much to ask questions. Right.

So those leaders asking those questions, you know, for an example, you know, I again growing up in a small town back in the day, right where you know the ADA did not exist at that point, you know, but section 504 of the Rehab Act did.

So, I remember in 6th grade, you know we go to environmental camp. I do not know how it is around the rest of the U.S. but… we go to environmental camp!

And it was not even a question of whether or not I was going.

It was, alright, how are we gonna? You know, what do you need? How are we gonna make this work?

Yeah, and I went… just like everyone else and participated, just like everyone else. And it did not take much other than, I guess, making sure there were not stairs into my cabin.

To me, in my head, it is not that hard.

Alycia Anderson: It is not that hard. It is getting over what has been traditionally accepted for the inclusion of people with disabilities and especially kids, which has been not much, honestly.

Kerri Vanderbom: It is being human. It is being… It is not being… just do not be an A-hole. Be human.

Alycia Anderson: Yeah. Was there anything that you took away from the Rollettes experience that you want to share?

Kerri Vanderbom: You know from the get go, you and I getting to travel there, like it was… That was just so wonderful getting to hang out with you.

But you know when we… when we arrived in LA, at LAX, you know, going to get the shuttle to go to the hotel.

You know, there is so much anxiety there. Is the bus gonna come, will the ramp, you know.

I know they said that it was gonna be there, but is it or we…? Even if it comes are we gonna have to wait two hours, right?

But everything was so smooth going into the hotel and seeing they had the lifts in the pool and again, it is just those little things that just make my heart happy.

Seeing all the… [girls] there were so many! When we rolled into the lobby. We were like, whoa, there is a lot of us.

Alycia Anderson: I feel like in our world of sports. It is a lot of men and a couple women here and there.

So that was really cool. It is giving me the chills because I loved just being around a bunch of disabled [girls] that is probably for the first time ever. To be in that large of a group of disabled women specifically.

Kerri Vanderbom: Yeah, absolutely. That was so cool. You know, I think one of those pinnacle moments was you talking to the teens.

It was cool because they obviously need it. They need, they need that role model.

But it also reminded me of, like, Oh my God. We have so much work to do.

There’s… We need more people to help address these issues, we need… we need more advocates, we need more allies. We have a lot of work to do.

And so, you know, even hearing some of the other folks that were on your panel and just the wonderful work they are doing, it gives me hope as well.

And then just some of those young women and you know… what they are doing and how they are fighting for, you know, themselves and others with disabilities also gives me hope.

Alycia Anderson: The teen talk was for me the most important thing, the experience that I had there as well, and it was for all those reasons that you just said. Like seeing how they are advocating for themselves, or how much work there is to still to do and just the raw emotion.

It took me back to adolescence, you know, I think, yeah, I am in my 40s now.

So, it is like to rewind and go back to those moments and remember how hard it is to be a disabled girl in high school with, you know, puberty and dating and the lack thereof, and not getting invited to prom and feeling like you do not fit in clothes, right.

And teachers not including you. And I mean some of these girls were in tears. It is given me some new motivation to continue to find more outlets like that to be an example for those girls like we did not have because when we were at the Rollettes, there was so much hope in these girls’ eyes.

So much more than I had when I was that age and I feel like that these are the moments that we can gift to others now, like looking back in the rearview mirror so they can be a little braver, a little bolder, a little more confident.

Sooner than… I know for sure that I was.

Kerri Vanderbom: I think it definitely gives a lot of weight to the importance of the stuff that you do with businesses, right? And trying to make things more accessible and inclusive and you know, so these girls go off to college, they can go work for any company they want without being discriminated against.

Alycia Anderson: We are so lucky that we have each other. Ohh my gosh. I love you.

Kerri Vanderbom: I love you.

Alycia Anderson: We’re going to wrap up and I like to ask our ask our guests if there is like a mantra or something that… I do not know… is there something that would motivate our listeners that you live by?

Kerri Vanderbom: I mean, life is truly way too short to let other people’s negativity or their ableism to weigh on you and stop you from doing what you want to do.

Yeah, I think just you know, you gotta… you gotta push forward and keep going even when it is incredibly painful and you feel like you cannot anymore.

And I… well, actually… and I might ramble from here, but you know one of the one of the teens when we were at that Rollettes experience, you know, had asked about advocacy fatigue.

And I was like, oh my God… that’s… Yeah, it is such a real thing.

And I worry for lots of people about it. Right. And so, you know, sometimes. You know, you got to push forward, but sometimes you also have to lean into your some of that anger and sadness and but you cannot lean into it for too long, right? You gotta feel it. Know it. But then let it go and keep going.

And while you need to take that break, reach out to your community, find someone else who can help keep things going until you can jump back into the game. Know things get better. Life is too short. Go for it.

Alycia Anderson: Thank you so much for joining Kerri and thank you to our listeners once again for helping us build this community. This is Pushing Forward with Alycia and that is how we roll.