Celebrating Disability Pride

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CARLY PACHECO, HOST: From KVMR and in partnership with FREED, this is Disability Rap.

ANA ACTON: To me, disability pride is loving yourself regardless, accepting your disability, accepting it as part of your uniqueness, and your amazingness, and your ability, your diversity.

PACHECO: Today, a conversation on disability pride with two Deputy Directors at the California Department of Rehabilitation.

KIM RUTLEDGE: My disability has informed all of the decisions in my life, and it has made me who I am as a human being. And that I’m proud of that, and I love that. And you know, if somebody came up to me tomorrow and offered me a pill that would take my whole disability away and I could do everything that everybody else could do, I don't think I would probably even take it.

PACHECO: That's all coming up right here on Disability Rap. Stay tuned!

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PACHECO: Welcome to Disability Rap. I’m Carly Pacheco.

July was Disability Pride Month, and to celebrate, we bring you a conversation between two women executives with significant disabilities at the California Department of Rehabilitation, or DOR. Ana Acton, the former Executive Director of FREED and former Disability Rap host, is now DOR’s Deputy Director of Independent Living and Community Access Division. Last month, she sat down with Kim Rutledge, the Deputy Director of Legislation and Communications at DOR, for a wide-ranging conversation about disability, disability pride, and self-acceptance. Today on Disability Rap, we air an extended version of their conversation. We hear Kim speak first.

RUTLEDGE: You know, we're both female executives with disabilities working in a department that serves people with disabilities, and I think that disability pride is, well, it's a wonderful thing. It's also sometimes a really complicated thing for people. And I think that you and I come to the same place as colleagues and friends from very, very different backgrounds to get to where we are today. Why don't you start out by telling me a little bit about your disability - how you acquired it, and what the beginnings were like for you?

ACTON: I actually acquired my disability when I was a freshman in high school. I was in a car accident that resulted in a spinal cord injury and I’ve been using a wheelchair ever since to get around. I also had a bunch of internal injuries in the accident, which resulted in me being a type 1 diabetic. So I also have those kind of chronic health condition pieces that I manage on a daily basis. So yeah, freshman in high school, and really ended up being a major life-changing moment for me, my family, my community, and really basically changed the trajectory of my life, as you may imagine.

RUTLEDGE: Wow, that must have been a really, really difficult thing to go through when you were only what, 14, 15 years old?

ACTON: Yeah, I spent my 15th birthday in the hospital, and, you know, that's a really interesting time in your life anyways, right? When you're going into high school, you know, young woman, all the pressures that come with just moving towards being an adult. It was a pretty intense time of my life for sure.

RUTLEDGE: So, what was it like when you got out of the hospital and had to go back to school?

ACTON: I was part way through my freshman year when the car accident occurred. So, I actually didn't finish my freshman year, and ended up doing... [I] was in the hospital for a couple months, and did physical therapy. And then ended up doing summer school so that I could make up my freshman year, and then go into my sophomore year. Actually for me it was a big adjustment. I lived in a very rural area, and I took a bus to school prior to the accident. It was about a 30 minute bus ride to school. So some of the first kind of challenges at that time for me were trying to understand, you know, how I was gonna be able to get to school.

But even beyond that, it was really interesting, because it was really hard for my parents. One, the guilt of feeling like their daughter, who's a minor, got in this accident and my life was forever going to be changed. There was a lot of conversation - and I would say misunderstanding - at this point in my life that I was going to have to be on disability benefits for the rest of my life. I would never have a job. And I would need 24/7 care for the rest of my life. That was actually the perception that my family had at that time. My parents were upset. My grandparents were upset. They started putting things together honestly for me, so that I would be able to have that reality, with the expectation I would never work again. I would be 24/7 care. Special needs trusts were set up so that I could maintain my benefits.

The home had to be remodeled, right? Because my home was not wheelchair accessible. Bathrooms remodeled, bedrooms remodeled, the whole downstairs remodeled. So there's a lot of adjustments that happened. And then just trying to navigate the durable medical assistive technology world. And I was an avid horseback rider and the only thing I wanted to do was get back on my horse after the injury. And everyone was like, "What? This is just not going to happen." But I do remember at the one year mark post injury is when the doctor said I could get on a horse again. And I did. That day, I remember my friends hoisting me onto the back of the horse, and that was sort of a huge moment in my life where I started feeling a little bit more like myself, honestly.

RUTLEDGE: That story definitely puts the phrase, “get back on the horse,” into a whole new context.

[Both laugh]

ACTON: You know, it's interesting, right, our disability experience. Some of us were born with a disability. Some acquire it at some point in their life. So for you, your story into the disability world is really different, right? There wasn't a traumatic experience. Tell us about that.

RUTLEDGE: Right, so I was born with a condition called Arthrogryposis Multiplex Congenita. And essentially what that big long three-word phrase means is that I have a lack of - or a weakness of - the joints that connect my muscles in my arms and legs. Everyone who has Arthrogryposis is affected by it a little bit differently. For me, I have very little use of my arms, so I do everything with my feet. So, I write, I type, I eat, put on makeup, basically whatever needs to be done, I do with my feet. I also don't have the ability to walk so I use a power wheelchair.

And the thing about my disability... I mean, the origin story, I’ve mostly learned from my parents, because I came... They did not know while I was in utero that I was going to have a disability. And I was born and grew up in a small town of 8,000 people in the middle of rural Kansas. And I was born in the rural hospital at 11:30 at night, and I was born breech. My arm was broken during delivery. And the doctors were telling my parents, "We don't know what's wrong with her. We don't know what this is. She may not live through the night."

So, I was transferred to the bigger city medical center. My first car ride was in an ambulance when I was just a few hours old. So, I was transferred to a NICU in Wichita, Kansas where I hung out for the first three weeks of my life. And to hear my parents talk about my time in the NICU, they said that there were a lot of babies in there that had a lot of really serious problems, and I was just, kind of... I couldn't use my arms, and I looked a little different. But I was chilling. I was basically eating, crying, sleeping, doing all the things that babies do. And at the end of that three week period when they did come to a diagnosis of my condition, my parents - this was the 70s - my parents were actually told, "You know, if you don't want to take her home, there's a place for her." Like, they were going to essentially at that point probably institutionalized me, or put me into foster care, or something like that. And my parents were, lucky for me, extremely offended, and they were like, "No! That's our baby. We're taking our baby home now.’ That was probably the first advocacy that they had to do for me.

And so for me, I grew up in this, as I mentioned, this really small town in the middle of Kansas. I was the first kid in my school system with a physical disability who did not need special education for any type of developmental disability. And they didn't know what to do with me. They were like, "Okay, well, I guess we'll just put her in the classroom, and give her an assistant." And so, this was just sort of my entire growing up. I learned a lot about advocacy, really, from watching my parents. And at the same time we were navigating me being this child with a disability, in this entire a family without anybody with a disability, a community without anybody that had a disability. It was rough, but I also think that it's part of what really drove me to want to do the type of work that I do now.

ACTON: Advocacy ends up being a big piece for all of us. I think for me the advocacy started immediately after that - my car accident and acquiring a disability. You know, it's interesting. You mentioned that you didn't have a lot of mentors or other people with disabilities. You were kind of like blazing the way, it sounds like, for accessibility in a rural Kansas town and school.

RUTLEDGE: That's true. The only people... I mean, when I was growing up, the only other kids I knew with disabilities were the ones that I went to summer camp with. I went to a summer camp once a year for a week with other kids from other communities in my area who had disabilities. Most of them had some form of Muscular Dystrophy. And I made friends that I still have to this day there. But most of us lived in our own little small rural communities and had to figure things out, you know, apart but together. Having those relationships was so beneficial to me, especially when I decided to move to another state and go to college after I got out of high school. And I had to learn how to navigate attendant care, and finding accessible housing, and all of these things that I had never had to really think about before. So, not having that mentorship, not having adults. I didn't have adults in my life who had disabilities. There was not a single adult that I could look up to through my whole childhood who had a job, who had a family, who lived independently.

And so, when you were talking about when you first had your accident and your family was making financial preparations for you to never be able to work, or be independent, my family was advised to do a lot of those same things. There was a special needs trust. There were all these different things that were set up for me. And even though I did go away for college and lived independently, there was always that fear that something would happen and I would need that safety net to fall back on. I can't blame our parents for that, because when you don't have people, when you don't have adults with disabilities that kids can look up to, those assumptions are made. And I went through a phase, probably in my 20s, where I was really angry at the way that my parents handled some things. But then I realized as I got older, and as I became a parent myself, that they were doing the best they could. And they were figuring things out the best they could with what they had, which really was not that much.

ACTON: Well, what's interesting [is that] when I first became disabled, the only person that I could think of in my life that I knew that had an obvious disability was a neighbor and friend of my parents. His name was Sam Dardick, and he had polio, contracted polio as a child, used the manual wheelchair, and, you know, was just this amazing human. Built his home from his wheelchair, raised his children, and ended up starting the first center for independent living in our – well, the only - first and only center for independent living in our area. And so while my parents were sort of getting this messaging from the doctors and the social worker side of things that I was gonna never work, and not necessarily have a family, and be on benefits, this other influence was there, right? And [he] ended up being kind of my mentor, ended up being the person that was really critical for me to be able to see doing their daily life, and be able to then help me envision what my life would be like moving forward with a disability. And so that ended up being an amazing role model that I’m so grateful to have had the opportunity.

RUTLEDGE: So, we're in July, which is Disability Pride Month. And I have to be honest that this is something I’d never even really heard of until just a few years ago. And I was like, "What? Huh? Really? Disability Pride?" It's kind of taken me some time to, sort of, come to acceptance around disability pride. So why don't you... I feel like you... I look to you - even though we're about the same age - I look to you as being someone who is way more experienced with the disability world than I am. So what is disability pride mean to you personally?

ACTON: I mean, it comes down to just loving yourself. But I would say the journey to being comfortable and proud of who you are, including your disability, is a very different journey for each and every one of us, really. I mean, for me, it wasn't until about five years post acquiring my disability that I started to really come to terms with it and not think about it every day and I started really moving forward with my life. Prior to that I would cry a lot. It was really hard. All I could think about was this new reality for me, and it really took some time. But even in my story you hear when I go to, you know, get my first job and was reluctant to work for a disability specific organization, right? So it's an ongoing process.

And working at a center for independent living with individuals... I’ve seen it so many different times in so many different ways where you've seen one disability, you've seen one disability. You've seen one person and how they manage their disability, you've seen one person. I’ve seen people who are born with a disability that really don't identify as having a disability even later in life. I’ve seen people who acquire a disability at an older age and really struggle for a long time to, kind of, "move on" so to speak, from that trauma that occurred, to living life with a disability. And everything in between, right? I’ve seen people acquire their disability and be able to really move forward quickly, and others that don't.

And so, to me, disability pride is loving yourself regardless. We all have different issues in our lives. Some of them are really obvious. I wear my disability, you know, on my wheelchair. When I go down the street, people are like, "Oh, the girl in the wheelchair." I’m sure you can relate to that.

RUTLEDGE: Just a little bit.

[Both laugh]

ACTON: Yeah. Other people may have a mental health disability, a hidden disability, right? And [they] may be discriminated against even more so because no one understands why they're doing things a certain way, or acting a certain way, or whatever it is. So you really can't judge, right? The person who walks down the street who quote unquote “doesn't look like they have a disability” versus someone who has an obvious disability, you really don't know how they internalize it and how it impacts their lives, right? And that's something I had to learn early on, is that it's not Disability Olympics. It's not that one of us has a “worse” quote unquote disability than the other or, a “better,” right? It’s a really personal experience.

And so I think for me disability pride is being proud of who you are, accepting your disability, accepting it as part of your uniqueness, and your amazingness, and your ability, your diversity. And I really see disability as adding to the strength of our community, right? Just like race, and ethnicity, and age, and all these other things that make up the unique and complicated complexity of the diversity in our community. Disability is part of that, and it's something that we should be proud of. It's something that we will experience, if we live long enough, frankly, right? Whether you're born with it, whether you acquire it, whether you age into it as an older adult. Whether it's temporary, or it's permanent, or it's a friend or a family. Disability is part of the human experience. And I think that's disability pride, is understanding that. It's not good or bad, it just is.

RUTLEDGE: I love your statement - it isn't good or bad it just is what it is - because I feel like that toward my disability. My whole life, I’ve had people say, “Oh, I’m praying for you." "Oh, I’m so sorry you have a disability." And it's just like, ah... It is what it is. And for me at least, it's all I ever knew. However, that's been a really interesting and somewhat disjointed journey for me. When I was growing up, not having a lot of other people in my life with disabilities around me, I think that I - especially in my teenage years - became really obsessed with the idea of trying to assimilate into able-bodied society as much as I could.

Like, something that comes to mind for me is when I was a senior in high school and I had my senior portraits taken - you know, next to the tree, and in the field... And what everybody does when they have their senior pictures taken... I insisted that I not be seen in my wheelchair in any of those pictures. And that was very, very important to me. And now, I think back on that and it just makes me cringe. I just cringe at myself, but I was that ashamed. That I didn't want in the permanent annals of the yearbook or whatever that I was the one with the wheelchair, even though everybody knew that I was. And, you know, just the things... Body acceptance I think was really hard for me because my body is very different. And I grew up with a very prim and proper mother who for many many years pinned shoulder pads into all my clothes so it looked like my shoulders were quote unquote “normal.”

I got messages. I didn't date all through school. I thought that I was very unattractive and that nobody would ever want to be with a girl with a wheelchair. So I think that all of these external messages that I got throughout my growing up really never gave me much inspiration to be proud of my disability. I think I definitely just kind of looked at it as: it is what it is. And it's taken me really until my 40s to realize that my disability has informed all of the decisions in my life. And it has made me who I am as a human being. But that I’m proud of that, and I love that. And if somebody came up to me tomorrow and offered me a pill that would take my whole disability away and I could do everything that everybody else could do, I don't think I would probably even take it. Because I figured out my life the way it is. That would be a lot of change really quick.

ACTON: Right.

RUTLEDGE: So, I think that that's really where disability pride was not something that was instilled in me. And what was instilled in me, and what I spent the majority of my life doing was trying to be as un-disabled as possible with a completely obvious disability, which is ridiculous when I say it out loud to you. But it's true.

ACTON: You said a couple really interesting things, Kim. I’ve heard that whole saying where, you know, when I was newly injured there were some mentors that would come into the hospital room - they were people who use wheelchairs - that we're like, "Hey, there's life after disability." And I remember one of them saying that, where they're like, "You know, even if I could change in my disability, if I could get some cure and walk out of my wheelchair and not have to use it, I wouldn't do it." And I remember being young to my disability and being like, "No way. I don't believe you. I don't understand what you're saying, and I will never be in that position. I would always take the option for the cure and to be able to walk."

But I totally get it now. It's really interesting, right? Because as you go through life, you realize that you can't separate yourself from your disability. Like you explained, it's like all your life experiences have been impacted and influenced, right, where you are today. And look at you! You're a Deputy Director of a state department. You are influencing the lives of thousands and millions of people, right? And how do you separate that, right? So that's basically where I’m coming from now. It's like, I can't really separate my disability experience. I’ve had some amazing experiences. I’ve traveled the world, and I’ve been to beautiful places. And I have a family, and a 10 year old, and a great job. And all these things that have been driven by passion that has been generated from my disability. So I don't know that I would change that either, at this point, right?

And you know, it's interesting because, you probably get this too... I still get it to this day. Where you see someone on the street and they say, "Oh, what happened to you? Well if there's a cure, you know... Oh, I pray for you... I hope that there's a cure that will help, that you'll be able to walk again." And what's interesting is at this point in my life, I don't think about that. Like, I had to move on and see my life with a disability in order to be where I am, right?

RUTLEDGE: Yeah. And I feel like that drives the work that you and I both do now. I think that being able to look at kick-ass women like us can really benefit people, can really benefit families, can benefit young people, so they don't have to grow up without that mentorship. And that parents... I mean, having a child and not knowing what's gonna happen with that child is terrifying. And being able to look at an adult and say, "Oh, well maybe my kid can do those awesome things someday," is so important. And I think that's really, for me at this point in my life, where I derive a lot of my disability pride. I just am proud of what I have done. I’m proud of my achievements, and I want to be able to see other people be able to achieve those things.

I got my first power wheelchair when I was six. And I remember just being able to do so many things with other kids at that point. Whether it was at school, there was a creek behind our house, and I would drive my power wheelchair down into the creek with all my friends and get it stuck there. And my parents would have to come and pull it out. And I’d be in all kinds of trouble. But I think that we need to get past this mentality that wheelchairs, or any kind of adaptive technology, any kind of durable medical equipment, as being you know the metal prison that Jerry Lewis talked about many years ago. Because it gives us freedom. It gives us the freedom to do things. And when you're six years old, and never been able to go anywhere or really on your own before, that was incredible for me.

ACTON: I mean, can you imagine what our lives would be without our assistive technology, without our wheelchairs?

RUTLEDGE: Well, Ana, thanks so much for having this conversation. I think that I value you, and I value our department, and I value all of the people that I work with that have disabilities now, because I learned something new in all of these conversations. And I’m just so appreciative of that.

ACTON: Thank you so much, Kim, and right back at you. So appreciative to be able to work with people like you, and others at the department and throughout the state. I’m just thankful to be able to work in an area that I’m passionate about, that can make a difference for so many people. And just remember that normal is just a setting on your clothes dryer.

PACHECO: That was Ana Acton, the Deputy Director of Independent Living and Community Access Division at the California Department of Rehabilitation, or DOR, in conversation with Kim Rutledge, the Deputy Director of Legislation and Communications at DOR. They spoke as part of DOR's celebration of Disability Pride Month, which just wrapped up yesterday. In addition to this conversation, DOR hosted a panel discussion on disability pride, which featured my co-host, Carl Sigmond, as a panelist. We will link to the recording of that event on our website, FREED.org/disabilityrap.

And that does it for this show. Disability Rap is produced and edited by Carl Sigmond. Special thanks to DOR’s Cynthia Butler for sharing today’s audio with us and to Courtney Williams for her support. To listen to this show again, go to FREED.org/disabilityrap or wherever you get your podcasts. We are brought to you by KVMR in partnership with FREED, and we’re distributed by PRX, the Public Radio Exchange. I’m Carly Pacheco for another edition of Disability Rap.

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