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Episode 12: Emily Ladau and Lawrence Carter-Long
189 Plays14 days ago
Activists Lawrence Carter-Long and Emily Ladau sit down with the CPGU crew and talk advocacy, ableism, and internalized ableism.
Cerebral Palsy Foundation on Instagram: @yourcpf
CPGU on Instagram: @cerebralpalsygrowsup
Follow Emily on Instagram: @emilyladau
Follow Lawrence on Instagram: @lcarterlong
Credits
Host: Alexa Orban
Executive Producers: Ashley Harris Whaley, Rachel Byrne
Producers: Katy Gaastra, Kyle Khachadurian
Graphics: Briana Raucci
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Transcript
Introduction to Cerebral Palsy Grows Up
00:00:10
Speaker
Welcome to Cerebral Palsy Grows Up. Join us as we dive into the unique experiences and stories of adults living with cerebral palsy. We hope that as you listen, you feel a sense of camaraderie and community.
Activism, Ableism, and Allyship Discussion
00:00:23
Speaker
On today's episode, we're going to talk about activism, internalized ableism, and accessibility and allyship with Emily Liddow and Lawrence Carter-Long. This is a heavy topic, but an important one because it impacts all of us in and outside of the disability community.
00:00:40
Speaker
Lawrence Carter Long is a renowned disability rights advocate, speaker, and writer known for his work in media representation and disability culture. He has served as the Director of Communications for the Disability Rights Education and Defense Fund and has been a voice in advocating for the inclusion and accurate portrayal of people with disabilities in the media.
Guest Introductions: Emily Ladau & Lawrence Carter-Long
00:01:03
Speaker
Emily Ladau is a prominent disability rights advocate, author, and speaker. Emily has Larson syndrome, a congenital disorder that affects her joints. She has been an advocate for disability awareness and inclusion from a young age. She authored the book, Demystifying Disability, What to Know, What to Say, and How to Be an Ally, which serves as a guide to understanding disability and fostering inclusivity.
00:01:30
Speaker
She is also the co-host of the Accessible Stall podcast, where she discusses various aspects of disability culture and accessibility.
Impact on Host's Perspective
00:01:39
Speaker
This episode made such an impact on how I see my own internalized ableism and the ways I choose to advocate and share my story. I learned a lot from both LCL and Emily, and I think you all will too.
00:01:53
Speaker
I'm so excited and thankful to have Emily Liddow and Lawrence Carter-Long with us today. and Emily, I'd love for you to introduce yourself to our viewers. Yeah. Hi, everyone. I'm Emily Liddow. I am a disability rights activist, author, communication strategist, um and I just pretend to have CP. I don't actually have it.
00:02:19
Speaker
You're your honorary seep. You are. I like to think of myself as belonging to the seep community. I do have the startle reflex. Anyway, that's me. That'll all get you admitted as far as I'm concerned. Yes, I think so too.
Lawrence's Career Journey
00:02:40
Speaker
Lawrence Carter-Long, I'd love for you to introduce yourself as well. Hi, thank you, Alex. Yeah, I'm, let's say, middle age, like I'm doing my visual description. I'm so used to doing that. um But, you know, done a lot of different things during the course of my career. Was a radio show host in New York City, a producer for for six years, modern dancer for a brief stint with a dance company, Heidi Ladsky Dance.
00:03:07
Speaker
I also did some time in the government working for the National Council on Disability as the communications lead. And tens always have my toe, if not my foot, ah dipped into the media film and representation in terms of disability, the history and evolution. so hands in a lot of different pots, but it really um all revolves around how we perceive and depict its ability. Yeah, and I think that that's you know something that, as both activists and advocates, we can expand on more in this conversation, and I would absolutely love to.
Advocacy vs. Activism
00:03:46
Speaker
um So I'd love to kick it off with, what's your perspective um on advocacy versus activism? And Lawrence, I'll send this to you first.
00:03:56
Speaker
Yeah, it's an interesting question. I was thinking a lot about this because prior to my the the six, seven years I was in the federal government, I think I would have been solidly in the activism camp. right And the activism camp, as I see it, is a little more direct action, you know protest, things to bring about, social or political change demonstrations.
00:04:19
Speaker
civil disobedience here or there, right? All to kind of draw attention and to the cause and pressure to the authorities. Advocacy, at least as I understand it, um and certainly as I experienced it when I was within the federal government, was was efforts to influence public influence public policy laws and regulations, right? So that was a little more about dialogue and lobbying and and public education.
00:04:48
Speaker
persuasive, trying to bring people into the cause, but I'd say advocacy works a little bit more within established systems and structures and activism is often trying to break those things down or reshape them. Yeah.
00:05:03
Speaker
I definitely agree with that and I also think there's that layer now of self-advocacy when people are you know talking about their personal stories um across social media or when they're connecting in certain talks. So I think now we even opened up another layer of where advocacy can come in because there's so many channels that people can advocate for themselves too. I think that's absolutely true and it's become because of the nature of how society is changing, how culture is changing,
00:05:34
Speaker
Yes, it's a new layer to um the advocacy that people were already doing. you know when i I've been at this a few decades now, and when I started out, people would simply drive themselves ah until to the point of exhaustion.
00:05:50
Speaker
And um that was expected of you. If you weren't doing that, then you weren't a good activist. And I think people have learned, maybe the pandemic um had something to do with it, that if you want to be able to sustain the work and continue to be um ah effective, not only in the work that you do, but have the energy ah to do it, then you've got to take care of yourself first. And so I think that's a ah welcome change and one that was long overdue. Yeah. Wow. Emily, I'd love to hear your perspective on this too. When I was younger, I very firmly identified myself as a disability advocate. I felt like I was speaking up about things, that I wasn't yet actively taking action
00:06:41
Speaker
to create change. And it's not to say that advocacy does not create change, but it is to say that for me, activism is more about the action that you're taking. So advocacy is, at least to my mind, you're talking about the issues. Activism is saying, what are we going to do about those issues? What substantial changes do you want to see, and how are you going to be a part of making those changes?
00:07:09
Speaker
And I think that the two need to exist hand in hand. I don't think that someone who identifies themselves as an advocate should be frowned upon by an activist for not doing enough. I think that there's room in the disability movement for people who are the storytellers, for people who are the fighters and the doers. And I don't think that those are mutually exclusive. I think that it really depends on what works for your mind, for your body, for your communication style.
00:07:42
Speaker
for where you are in life at any given moment. So I do call myself an activist now in the sense that I am not just sharing a story, but I'm also saying, here's what I want you to do about it. But I think that we need everyone in order to create the changes that stem from advocacy and activism.
00:08:04
Speaker
Yeah, could I just add, i I really agree with that. I think it's important to consider not only the context, but the circumstances. And depending on what the goals are, what you're attempting to do, what the occasion calls for, advocacy and activism are very fluid. And I think most of us who have been doing this um do tend to fluctuate between ah um sort of those polls, depending on what the situation calls for.
00:08:33
Speaker
Yeah. And I'd love to know both of your stories for, um, you know, being inspired with early activism and the disability community too. LCL I'm going to let you take that first. Yeah. We were both sitting there. Okay. Who's going to go?
00:08:48
Speaker
you know In terms of early, and and I wouldn't even call it advocacy or activism, but but you know my entry point on-ramp, if you will, um to being involved in disability anything ah was ah when five years old when I was drafted. I became a poster child for um a fundraising campaign in my and the hometown where I grew up of Indianapolis, Indiana.
00:09:14
Speaker
Now the goal, this was the the early 1970s, to date myself a little bit, was always to fix, cure, get rid of. whatever that disability might be, right? So my job but was to walk out on stage with my walkie little CP legs and and to say to folks, thanks to you, it's working. Thanks to you, I'm walking, right? And I'd always do that little pause. Thanks to you, I'm walking. So the goal was to walk, right? The goal was to be as quote unquote normal, I'm doing air quotes here, as possible, which ultimately means get rid of the cerebral palsy.
00:09:51
Speaker
um But what I learned as a result of that was just invaluable because I learned that if you went on on stage in front of people and you could speak somewhat coherently, people would listen to you. And if you went on the TV or radio and you could kind of put a thought together, people would listen to you. And even though I was determined ah after my stint as a poster child, which lasted about a year, ended that I wasn't gonna do that again because it just felt icky to little five-year-old me. I remembered those things. And so when it came time for me to think about what kind of life I wanted to lead, what kind of career I wanted to have, you know, I initially went into theater when it was clear that there wasn't going to be that many roles
00:10:47
Speaker
for someone 19, 20 years old with cerebral palsy, given the biases and the discrimination within the entertainment industry, I simply took those skills and transferred them into media. And so I took what I learned at five years old and started applying it in my early twenties to say, I know the tricks you guys are using. Let me put that back on its head and use these powers for good.
00:11:12
Speaker
That's amazing. Yeah, it's that foundation that you didn't realize you were going to have at such a young age that was going to build you up to be the person that you are today.
Lawrence's Media and Advocacy Experience
00:11:21
Speaker
I mean, even your background, it's so diverse to be where you were and then take all of those skills and become who you are now.
00:11:29
Speaker
Yeah, the road you tends to, you know with a bit a bit of a hindsight, which is, just and at least in my experience, and the only thing that's 2020, because you can't see it often and that when you're in the middle of it. But with the benefit of hindsight, when you when you have some time and some distance and you're able to look back a little bit,
00:11:49
Speaker
The road is very seldom, for me at least, been linear. It it hasn't been necessarily what I planned or what I thought I'd be doing at any given time or two years from that or five years from that or 10 years from that. but But when you start, when you're able to look back upon that, it makes an odd kind of sense. And and even though there were these doors that opened and these these on ramps you took somewhere along the way,
00:12:16
Speaker
it all becomes a tool for the toolkit and you're able to bring all of those things to the table. Whether you were, you know, 100% successful or the thing just fiddled and flapped, you're able to take something away from that that you can apply to the next project and the body of work that you do.
00:12:35
Speaker
Yeah, definitely. And Emily, I think, you know, similarly to Lawrence, I mean, you've started at your advocacy at a very young age as well, around 10 years old, correct? Yeah, it's funny because in a lot of ways, ah Lawrence and I have parallels in how we got our start. I would say that the benefit that I had was that rather than being treated as a poster child, I was I would say representing disability in a bit of a more evolved way. In a sense, I was still a poster child when you think about it because I appeared on multiple episodes of Sesame Street when I was 10 years old. And it was an incredibly positive experience. The script writer has a son who has Down Syndrome, her name is Emily Pearl Kingsley, and she worked with me to make sure that my story was
00:13:32
Speaker
accurately represented that when I was on the screen, I was showing up authentically as authentically as a 10 year old can show up. And that was incredibly meaningful to me.
00:13:45
Speaker
So was it perhaps tokenizing in the sense that I was the disabled kid on the block? Yes, but I think that I had the benefit of being taught that the reason I was the disabled kid on the block was because disabled kids exist on the block and there need to be disabled people if you are telling a story about a neighborhood, about a community.
00:14:10
Speaker
so my start to really getting to tell my story ended up happening on this national platform. And I recognize that that is a privilege that I don't think I ever fully appreciated when it was happening. But in hindsight, it taught me There is power in telling your story, in showing up, in being unapologetically who you are, and also in being that for other people. Because other people would say, hey, you're that kid who's a wheelchair user on Sesame Street. And I'd be like, yeah, that's me.
00:14:50
Speaker
and That was so huge because when I was really little, I had two books that had characters who were disabled. And I flipped through those books so often just to see myself. And you know what those books were about? They were about kids going to physical therapy. So that was like the extent of my representation. And then to suddenly shift from, okay, now I'm reading a few books to, oh, there's a girl in a wheelchair on Sesame Street because there was a character who used a wheelchair before I did on the show to then being that character
00:15:31
Speaker
I think set me up for a trajectory where storytelling was central to everything that I do. And I really came to realize that if we're not sharing our stories, if we're not seeing ourselves represented, and if we're not taking the power that we deserve to take up space in the room,
00:15:52
Speaker
then what are we even doing? That's really the question. So yeah, I think for me, my journey pointed me to where I am today in the sense that it showed me at a really early age, your story is important. Everyone's story is important. Let's tell those stories. I could not agree with you more on that because that's when, you know, I think from a journalistic perspective too, when people listen.
00:16:18
Speaker
when you can really connect with somebody at that person level, not just like saying like a broad community, right? When you say, because I saw Emily's experience, this is how it impacted me. I think that makes a big difference. You amplify that by all the creators and activists that are out there now, and it really starts to paint, I think, a more descriptive picture. But Ellie, I mean, I think this we've had this conversation before, um but how do you navigate your work and life being so inseparable from your sense of self? um Because that's a lot of pressure that it brings, especially from you know being 10 years old.
00:16:55
Speaker
Yeah, I think about this and talk about this so much. The fact that when I am done with working at the end of the day, I don't take my wheelchair off and put it on a shelf the same way that people come into their house and hang up their hat and their coat.
00:17:11
Speaker
you know and throw their keys on the counter. My disability is such an inextricable part of me that I have to be very conscious about creating separation between personal and professional. And most of the time I'm not really successful at that. I'm going to be honest.
00:17:29
Speaker
I think that because so much of what I do professionally comes down to navigating the complex issues of rights being denied or of people sharing their stories of discrimination.
00:17:43
Speaker
I can't shake that off when i'm done with work at the end of the day because the reality is then I go out into public and I experience it or I am doing something online and I experience it so I wish I had wise words about you know the ah separation of church and state as it were but I I just don't I haven't mastered it and I think that On the one hand, it's not a terrible thing. I like to joke that I'm a professional disabled person. It's disability 24-7 and I'm okay with that, but sometimes I just need to at least remove the activist hat. So yes, I'm disabled.
00:18:30
Speaker
But I also watched a TV show that said something offensive and I didn't get my knickers in a knot about it and I just let it happen. You know? So am I a bad disabled person? Professionally, maybe. But I gave myself a break to just be, to just exist. And I think we have to give ourselves permission to do that. So but that's my take on that.
Balancing Activism and Health
00:18:54
Speaker
Oh, definitely. I couldn't i couldn't agree with you more. I mean, i'm I'm in the space professionally. I also share my story and having conversations like this, like it's disability broad is on my mind 24 seven. And I know, you know, that being an activist can be exhausting, especially when you're disabled. So you have to balance your physical health with your work.
00:19:15
Speaker
And then you know it's more than I would say most people have to do. um So i'll I'll put this question back to Lawrence. What keeps you going when things feel heavy and hard and challenging? It's very interesting because this is a relatively recent um development in my life. um At the peak of the pandemic, i post COVID, I had these acute health symptoms, things I'd never encountered before.
00:19:43
Speaker
And um so not only was I isolating, not only was I pretty much um alone, everything was virtual, then I had these health issues that were not connected to, let's say, the cerebral palsy that I had to suddenly ah manage and deal with.
00:19:59
Speaker
And so that forced me to stop and pause and reflect and think about what do I need to do differently? And I can't just keep burning the midnight oil and and and and you know charging forward. that and And so I was forced to slow it down. And I was forced ah just by the circumstances to reconsider and to rethink the way that I was accustomed to doing things.
00:20:28
Speaker
and And that, in and of itself, um through time, has taught me that breaks, rest, relaxation, things that aren't directly linked to advocacy work or activism.
00:20:44
Speaker
are just as essential as all of those things. And so I bake just in the same way that you might factor in brushing your teeth and it's just something that you do every day. I factor in time and space to go for a walk.
00:21:02
Speaker
or to go before a bike ride, or to watch media that has nothing to do with disability whatsoever. So I make a conscious, deliberate, intentional effort to infuse my life with things that aren't advocacy. And I find that when I go back to doing the advocacy, not only do I have a different point of view or a different perspective or more to bring to it, i'm also I also feel a little bit more refreshed uh and and reinvigorated in order to do the work so these things kind of feed and inform each other and um you know circumstances happen when they happen you can't necessarily reason backwards and say well if that had only happened 20 years earlier but i think I think if it had happened 20 years earlier, that I would have approached advocacy a very different way and what would have come out would have been very different. So I guess if I were to impart one thing to people, it would say learn from my mistakes and try to incorporate whatever, if any of that resonated with you, try to incorporate some of that sooner so that it doesn't become an issue of burnout and then you have to do it out of necessity.
00:22:17
Speaker
slowly but surely integrate those things that make sense um as you can and it'll probably make the advocacy that you're doing um more sustainable in the long term. Yeah and I think that this is perfect you know when it comes to your hashtag say the word um and on that timing that you know when when everything started to go viral I mean this hashtag is still being used eight years later so when you're talking about you know 20 years ago, things may have been different.
Origin of #SayTheWord Hashtag
00:22:46
Speaker
like What do you think of that, to still have the viability of that today and and that message still being out in the world?
00:22:54
Speaker
It doesn't surprise me, although it wasn't what I intended. So the the the context, because what what did the use what other people adopting an hashtag and making it their own illustrated to me and affirmed for me was that I struck a nerve, was that it was a way to crystallize and focus a point that other people were already thinking.
00:23:17
Speaker
and And I just happened to put it in a context or a format where they could jump on it and use it. um Let me give you the context for what where that came to be. I was working for the federal government at that time, and we were all there was a bunch of us in DC who were live tweeting President Obama's State of the Union address. And I had worked with colleagues ah who were working at the White House at that point to make they're ah the simulcast on the web that they had that they had done and put all this energy into as accessible as humanly possible, involving different kinds of captions and and and just whatever was possible at the time. I don't remember the specifics, but I know there was a lot of work toward making that State of the Union accessible and and that and that disabled people had centered that.
00:24:06
Speaker
and um And so at the end of the speech, the president who I had a lot of respect for and indeed came to work for the federal government in part because of my my respect for the administration.
00:24:18
Speaker
ah we're going through this kind of laundry list of constituencies. He was talking about, ah but you know, Latinos, Latinas, he was talking about senior citizens, talking about LGBTQ folks. And so I thought, ah, for all this work that all of us put into it, the fact that we're live tweeting as he's giving the speech, maybe he's gonna mention disability communities.
00:24:44
Speaker
And at the end of the speech, he did not. And so I was angry and I was disappointed and I threw a little online hissy fit. And so what I, what I basically said is, what is it going to take for the end to say the word disabled?
00:24:59
Speaker
And I hashtag this. What is it gonna take? We're putting all this work in. There's this, there's that. i ah do you know And so I was frustrated and I was disappointed and I was angry. And so I put that out into the world, just kind of in ah and ah and a little bit of anger. And in the next couple of days, I got up and people were using it, I think in Wales and in Australia. And all of a sudden it had this life beyond me.
00:25:26
Speaker
and And I think it was not even a month and then I started using it a lot because it became this little laboratory. And so I'm putting it out there and I'm giving people all the reasons that I could think of at that point why they should say disabled or disability.
00:25:41
Speaker
And a friend and colleague who was doing stories for National Public Radio at the time saw one of those posts on Facebook and said, oh, I'd like to learn more. Can I interview you? And all of a sudden I had to come up with a reason or something beyond the hissy fit to explain the need for that hashtag. And and what evolved out of that was was very simple. Whether you ascribe to, let's say, person first language, right? People with disabilities. Or you're about identity first language. I'm a disabled person. Both of those groups who are often diametrically opposed use the word disabled.
00:26:26
Speaker
You look at the disability community overall, almost no one is fond of differently abled, special needs, any of those phrases. So it is in some ways a unifying phrase.
00:26:40
Speaker
And it's a way to kind of cut through the nonsense and really focus who we are, not only as age of individuals, because go I don't even use a person with a disability or disabled people anymore. Whenever I use the word or say the word, I talk about disability communities because there's a heck of a lot of us out here. And if people need to be reminded, right, we've been conditioned to think that disability is a personal burden.
00:27:10
Speaker
that it's something that affects an individual. But ultimately, what affects one disabled person affects all of us in some way, shape, or form, even though the manifestation of that might be a little different. But in terms of housing, in terms of employment, in terms of respect, in terms of representation, we all struggle with the same issues, although the flavor is a little bit different. And so I think what the use of that hashtag um has taught me is that there wast there was there there are needs for focal points that bring us all together. And and if you can kind of crystallize or or focus that energy in some way, it allows us to communicate that larger experience
00:27:55
Speaker
those common things that, you know, disability for, I often say, once upon a time, for most of human history, disability was just a diagnosis. That's the only option you got. But if you look at the post ADA world, right, we're in Disability Pride Month right now.
00:28:15
Speaker
Disability has expanded and evolved to include so much more history, constituency, community, identity, culture.
Evolving Definition of Disability
00:28:26
Speaker
And when you think of disability, you've got to think about all those different definitions and you've got to use all those different definitions. And I think what that really shows us is that disability is much bigger, much broader, much more bad if I can use that phrase, then we gave it credit for.
00:28:45
Speaker
And it's a way for people to claim that power. Yeah, I definitely agree. And I love how like everything that you said, I mean, i I would chop that whole piece out and and just put it as, you know, the the goal of this episode, right? But I really think, you know, when you were talking about community, like that definitely struck for me because there is such an individualistic experience.
00:29:08
Speaker
in each person with a disability, as well as the disability community. And I think, you know, when you lump people into a group, their words and actions can be misconstrued as speaking for the entire community that they represent. um And Emily, I'd love to hear your thoughts on um a bit about what it's like to navigate that, particularly as someone whose work has extended beyond that bubble of just the disability community.
00:29:35
Speaker
It's funny that you specifically talk about my work extending beyond the bubble because I still struggle with feeling, first of all, like I am in an echo chamber much too often. and But my goal is to get outside of that echo chamber as much as possible because I want people to understand that disability is not a niche issue. And even though we relegated to the margins of marginalization, it is so often
00:30:06
Speaker
treated as something we're not supposed to pay attention to you at all, right? It's treated as something that we are supposed to be hush-hush about. And I want people to understand that's not the case with disability. Every issue is a disability issue because every issue impacts disabled people.
00:30:26
Speaker
and so That's where I'm coming from in all of the work that I do. But because of that, it's really easy to run the risk of people thinking that when I'm talking about disability, I mean to say that I am talking for the entirety of the disability community. I'm not. I make that so clear, and yet I still think that people See disabled people talking on the internet, see people from marginalized groups talking on the internet, and assume that if one person says something, it must be true for the whole community. And I always give the caveat that I am a white woman with a physical disability. I am a wheelchair user. I communicate verbally. I identify as the gender that I was assigned at birth. I identify as heterosexual, et cetera, et cetera. And so, yes, I have the experience of being disabled.
00:31:23
Speaker
But I do not have certain other experiences of what it means to have overlapping marginalized identities. So very, very often I have to correct the record and remind people that I am one person with one thought process and one lived experience. And I always say there's more than a billion disabled people around the world. So you're going to have more than a billion experiences, opinions regarding disability.
00:31:53
Speaker
And it can be really challenging to thread the needle of, okay, I'm going to tell you what my opinion and my experience is, but this is not true for everyone.
00:32:08
Speaker
So I try to be as clear about that as possible, no matter what it is that I'm saying or what it is that I'm talking about. And then I want people to recognize that if they listened to me talking for half an hour, an hour on a podcast through a speaking engagement.
00:32:26
Speaker
Okay, great. So you've heard something from one disabled person. Now, go listen to something from another disabled person. And I think that is, at the crux of my work, is encouraging people to understand that the power of storytelling is not the power of one person's story. It's the power of having multiple stories to inform a broader perspective on how you understand the disability experience.
00:32:54
Speaker
So yeah, I'm constantly trying to get outside the disability bubble. But when I do that, I have to make sure that I'm being mindful of the fact that my perspective carries weight. I don't want it to erase someone else's perspective who's not being brought to the table.
00:33:15
Speaker
So I'm hopeful that if people are listening to this right now, that it's just one thing that they're listening to in a much broader scope, I would say, of disability-related media.
00:33:29
Speaker
Yeah. And I think it even can come down to the experience with cerebral palsy. I mean, there's such a wide spectrum of our disability. And, you know, like for myself, I mean, I identify as someone living with mild CP. And, and I think the reason that I do that is because I want to show people that It affects my life at this level, and there is so much more of a spectrum. um So to to have people understand that, and again, I'm just one person sharing my story. um So it's a really important factor that comes into a lot that we do, but I also think it shifts perfectly into our next topic to talk about ableism.
00:34:11
Speaker
um because not only are we advocating here and you guys are doing so much important work, there's also a lot of stigma to break down with ableism. um So, Lawrence, I'd love to um you know hear your perspective and help our listeners better understand what is ableism.
00:34:30
Speaker
How much time do we have? i you know Because it really depends on the angle. It's so pervasive right that in order to do it justice, you you kind of have to break it down, the layers and the nuances. So ultimately,
00:34:48
Speaker
you know You can look at the systemic types of oppression, write the systems within society that could be politics, could be the economy, it could be exclusion or or unfair treatment of people that is just not the exception, but the norm. You you know could talk about how ableism intersects with other forms of discrimination like racism or sexism or classism, which is an issue I don't think gets enough attention.
00:35:19
Speaker
um as a you know son, an oldest son of a single mother who grew up in the Midwest and um would not have eaten breakfast or lunch if it hadn't been for school lunch programs during my youth. ah We don't talk about class.
00:35:38
Speaker
and enough and we don't talk about economic disparity enough. and I'd love to see more attention. that That's a part of it. right so you know Ableism also is about honoring the perspectives and the experiences of people with a broad array of disabilities. right Even within cerebral palsy, the severity of it, instead of trying to fit into this narrow, non-disabled standard And so, you know, ultimately you've got environments and policies and practices that are not inclusive or accessible to everybody. um And that affects issues about our lives, our bodies, our career paths, who gets to be an activist, who gets to be an advocate, who gets to be in the media, all of those things play into what ableism is. I think ultimately,
00:36:29
Speaker
When I think about ableism these days, I think a lot about opportunity and questions about who, you know, in the work that we do at DISART, we ask who gets to be an artist. You could fill in the blank and say the same thing for journalism or for filmmaking or for education, right? Who is considered attractive? Who is worthy of consideration?
00:36:55
Speaker
who or as someone whose experience or insights or expertise have value, have merit. All of that plays into um ableism. I think to to crystallize it though,
00:37:08
Speaker
To my mind, what makes ableism a little bit different from other forms of oppression, and this is significant and and important, is that it doesn't have to be, and I don't think it is necessarily malicious, not hateful. It's not intentional, and it's very seldom overt in terms of intention. Most people, if you ask them, point blank, do you hate disabled people?
00:37:31
Speaker
They'll look at you funny and they'll tell you no. And if you ask them if they want to harm disabled people, they'll shake their heads and say, well, heavens no, and and they'll mean it. But if you press a little bit harder and you ask things like, do you consider disabled people? Do you, in your work, do you do targeted out outreach to disability communities?
00:37:54
Speaker
Do you provide access accommodations, American Sign Language, audio description, flexible work schedules? ah If you ask things like, are disabled people in leadership positions in your workplace? Are our access needs reflected in your budget?
00:38:14
Speaker
you'll probably get a different answer. And so ultimately at the end of the day, I think what most people don't realize and the important factor about ableism is it's the default. It's really reflected not so much in what people say, but it's embedded in the ways that we think and the things that we do.
00:38:35
Speaker
or what we don't do. oh I'd say the ableism isn't just in the air we breathe, it is the air we breathe.
00:38:47
Speaker
And that's a necessary distinction.
Internalized Ableism: Discussion & Overcoming
00:38:50
Speaker
So powerful. I was um taking a walk the other day with my fiance, and I was talking about this exact topic, because I really wanted to bring up internalized ableism. And I love the way that you say it's in the air. And so I'm like, well, and I said to him, well, no, you know I really want to talk about why I feel ableist almost to myself. Like, no, I can do that. I can handle it you know physically, x, y, z. And he said, well, why do you feel you think that way?
00:39:17
Speaker
because of the societal norms that are built on you you know everything that we think. So of course, yes, you can push yourself or no, you don't need the bench or the accommodation because that's what the world around us shows us all the time. um So Emily, can you talk about internalized ableism for a minute? It's a whole other layer.
00:39:37
Speaker
Oh girl, ah internalized ableism is at least half the reason that I'm in therapy. um So, you know, it's not something that we give ourselves the grace to talk about enough because honestly, we spend so much time putting out the fires of ableism externally that we're not taking the time to look inward and say, okay, how am I letting this affect myself?
00:40:05
Speaker
And for me, internalized ableism manifests in this constant sense that I need to prove myself. So when I was younger, I went to mainstream public school and I was pretty much the only visibly disabled kid. And everyone would say to me, oh, well, your likes don't work, but your mind is fine. You're so smart. You're in the gifted and talented program.
00:40:34
Speaker
whatever, you take AP classes. And like, I thought it was the best compliment you could pay me to say that I was smart to say that you don't think of me as having a disability or I'm too smart to have a disability. I did not understand that I was internalizing ableism in two ways.
00:40:57
Speaker
first of all, internalizing that I needed to prove that I was worthy of existing and belonging in a space, and second of all, that people were essentially saying, well, if you don't have an intellectual, cognitive, or learning disability, then you are somehow more acceptable as a human being. Hence the, your mind is fine, your legs don't work.
00:41:16
Speaker
It took me years before I was introduced to a broader disability community where I realized how unbelievably ableist it was that I had to somehow justify my existence because I had a better, quote unquote, type of disability than someone else. So I could show up and somehow be more worthy in a space.
00:41:37
Speaker
and Thankfully, I was able to unlearn at least the ableism that said, I am somehow hierarchically superior to someone who has a cognitive or intellectual or learning disability because that is absolutely a disgusting way of thinking and just not true at all. I had to learn that for myself, but what I have yet to be able to unlearn because it was drilled into me so often day in and day out was this idea that I had to prove I was worthy of existing and showing up in a space and taking up that space and being part of the community and being recognized as someone who belonged. So to this day I will drive myself
00:42:28
Speaker
to to bring it back to what we were talking about earlier, the point of being burnt out because I feel like that is what I am supposed to do to show that I am worthy of existing. That is how internalized ableism manifests to me. And if I was talking to any other person, I would say,
00:42:48
Speaker
Now you don't need to keep up with the capitalist machine in order to prove your worth. Know your worth is not determined by how someone else views you, but because it was so inescapable for me and continues to be so inescapable for me, regardless of what I know logically, it is really, really hard to navigate through that.
00:43:11
Speaker
on an emotional level. So internalized evilism is just so incredibly pervasive because no matter how much we lift each other up and support each other, there is still that tiny little voice that is telling you, you're not as worthy as everyone else. You're going to have to try 10 times harder.
00:43:31
Speaker
to prove to people that you are worthy of existing. And I will counter that narrative for everyone else until the day I stop breathing, but it's really hard to do it for yourself. And I think until we reach the magical utopia where systemic ableism no longer exists, we're not going to be able to fight back against that internalized ableism. The two very much interplay off of one another, and it's an exhausting cycle. But the solace that I find is that I know I am not alone. And when I am surrounded by other disabled people, even just talking to both of you now, like that look of understanding on your face,
00:44:17
Speaker
is something that gets me through. be internalized ableism that I hold. So maybe I haven't gotten rid of it, but at least I know that there's solidarity in experiencing it. Definitely. And for a long time, I've said this before, I felt very alone in my disability and my experience. So I think that played personally a lot into my internalized ableism because my, I don't want to say goal, but my thought process when I was younger was just cover it up, just blend.
00:44:48
Speaker
um And I think that that also plays into you so much of where I'm at now in my journey. um But it's because, like you were saying, those things just go hand in hand, but now we're able to have these conversations together and see the perspectives.
00:45:03
Speaker
but On another layer, so you're already talking about you know the the systemic and then the individual ableism, there's also a link between accessibility and ableism. um And Lawrence, I'd love for you to talk about this too, because you were just talking about you know that accessible speech that President Obama did. And so you know can we talk about why accessibility is so important?
Importance of Accessibility
00:45:26
Speaker
Yeah, it's it's who gets to who gets to play. you know who gets Who gets an opportunity to flex their muscles, show their skills, or even develop those skills. So if you're not in the room or if you're not part of the conversation, ah then you don't get to experiment and try and fail and try again in all the different ways that I was blessed and able to do.
00:45:50
Speaker
And so I think everybody deserves those opportunities to try and to fail. And you can't do that if the world that you're navigating isn't accessible, right? I think it comes back in some ways to the ableism conversation in that undoing ableism isn't passive.
00:46:13
Speaker
it can't be. It's something that's got to be conscious and deliberate and when intentional. You know, much like anti-racism work, I think it's to in order to dismantle ableism, we can't simply be content with proclaiming or believing, I'm not ableist. We've got to be actively anti-ableist. And that takes word. And ultimately,
00:46:42
Speaker
creating an anti-ableist world means that you're you're creating a world that is accessible to the greatest degree possible. What that means is that one has to be flexible, one has to be nimble, one has to shut up and listen because one size does not fit all. And if somebody tells you what they need, then you believe them, right? And then solidarity comes in when we go, all right, I may not know how to create that. The question's never been asked before. Maybe it's never been attempted before, but together, let's figure it out.
00:47:19
Speaker
And then you you have that shared goal. I think it ultimately ah involves having any young ah embracing that sense of ah what we talk about in Disarte continuous becoming. Understanding that the work begins with a checklist.
00:47:37
Speaker
But that's not the finish line. That's what gets you started. And then understanding that you will, as as long as you're committed to the work and you're genuine about the work that you do, you will never ever be finished. You can always get better.
00:47:52
Speaker
And if you embrace that process, it becomes exciting. It becomes something that you're you you get and stay curious about in figuring out how you can always do better. And that not only benefits you, but it benefits the people around you and and and the world at large. Yeah.
Embracing Life's Challenges
00:48:14
Speaker
Going back to your personal experience after all of that absolute gold that you just said, um you know the unifying thought line for this podcast is CP Grows Up. So when you were talking about that checklist right ah of all the things um you know that you think of when you're making these decisions, is there anything you wish you understood or had done sooner? Emily, do you want to take that or do you want me to do it?
00:48:39
Speaker
I mean, I feel like the slight fraud here, not actually having a CP, but again, um I suppose that I can share a little bit of wisdom. um I am, i am as an as LCL said earlier, an honorary CP. You are. Gosh, um what I wish I knew.
00:49:04
Speaker
Every time I ask this question, I don't know which is more frustrating to me. Is it like the what's your five-year plan or the what would you go back and tell yourself? And both of those questions are so hard for me because I just don't think there's a good answer to either of them because both of them require a level of certainty that I don't think I'm ever going to have as a disabled person. I think that I have come to the conclusion that embracing the mess and embracing the messiness and living in that messiness is the best possible thing I could tell someone else or tell myself and that would be the advice that I would give to little me and that would be the advice that I would give to future me because
00:49:50
Speaker
I think as much as I would like to put myself out of business being a quote unquote, professional disabled person, I don't really foresee that happening in the world that we live in. So instead, if you are willing to embrace that messiness, it doesn't mean you have to accept it, but it does mean, you know, face it head on and live through it.
00:50:13
Speaker
I think that is what I wish I knew when I was younger because I spent so much time trying to fight against it, to go against it instead of saying, okay, this is happening regardless. And it's unfair that disabled people have to become more resilient. I think that resiliency is a complicated topic. I think that we are put through the wringer of everything from systemic ableism to medical trauma to being excluded to being pushed to the outskirts, right? And when you hold on to all of that, you know, it can get frustrating and you can be like, all right, what's even the point? The point is that you are worthy and you deserve
00:51:06
Speaker
to be existing like everyone else and so if you can just hold on through that messiness and Move through it and live through it. It's like that saying the only way out is through I Mean look I feel like in a way that's like motivational speaker talk, but it's also true the only way out is through and so for me I'm embracing that messiness. I'm embracing that chaos and I don't love it. And I don't always appreciate it. And I wish didn't exist sometime, but I'm going to keep going through it. And no, I'm really not a motivational speaker. That's about as inspiring as you're going to get out of me.
00:51:46
Speaker
i would I would add, and I think i I inferred this earlier, that that i'm I'm struck how um the path to progress, not yeah not only progress, but growth just in general is in linear.
00:52:02
Speaker
and and doesn't have to be linear. I wish I'd gotten out of my own way in that regard sooner. ah You know, it's those twists and turns that you don't see coming and that make the journey interesting and and in some ways worthwhile. So I wish I had understood that sooner. It would have been nice to be a part of disability community.
00:52:26
Speaker
Sooner, I mentioned that I was a poster child when I was five and then I stepped out and I stepped back. And while I always identified ah as disabled and and I was never ashamed of being disabled, I also had this sense that people that were doing advocacy work and people that were climbing up the stairs of the US Capitol and doing getting arrested and doing sit-ins and all that stuff, that was what they did.
00:52:55
Speaker
and and that there wasn't a role for me there. Emily mentioned, you know, high school, and and and I remember there were two other visibly disabled kids that ah that from high school, and we avoided each other like the plague. That could have been a source of solidarity and support, but we never even said a hello to each other until the 25th reunion of my graduating class.
00:53:23
Speaker
where we sit down we sat down and we kind of compared notes. And i I wish that I had felt it. I wish I had understood or appreciated the value of getting connected with other disabled folks sooner.
00:53:37
Speaker
for for so much of my life. In fact, i even in this stage, the majority of my life, um whether I understood it or not, I had i had still internalized that sense of trying to be normal, which meant not having cerebral palsy. So I didn't connect, I didn't click, I didn't hang out with other people.
00:53:59
Speaker
And ah it was only when I realized I was never going to be normal, no matter how I walked or if I walked, that I was able to let that go and become myself ultimately. and And I wish I had understood that a little bit sooner because I think the path would have been easier. Oh my God. I used to be mortified to be around other groups of disabled people in public. Going back to the internalized ableism, it was this thing like,
00:54:29
Speaker
Okay, if I'm alone and I'm disabled, people will forget that I'm disabled. But if I'm disabled and then you add another disabled person, then suddenly they remember I'm disabled. And well, isn't that embarrassing for me? And now I'm like, I would like to be surrounded by as many disabled people as possible. I don't care what kind of a circus you're judging.
00:54:52
Speaker
It looked like and I say that intentionally because people often assume, you know When there's multiple disabled people there must be some kind of freak show or something going on, right? um but Now I'm like, give me the chaos. I want more wheelchair. I want to hold up the entire Group of people waiting for the elevator. I want to make such a scene like i'm I mean, I'm joking but not really I absolutely love being surrounded by disabled people now because It's that sense of community that I did not have when I was younger that now I realize
00:55:27
Speaker
The only person who should be embarrassed is the person who finds it embarrassing that we're all together. Yeah. Yeah. right And ultimately, if they have a problem with it, that's their problem. I don't need to I don't need to pick up that suitcase and carry it around. And and ultimately, it's it's funny, I yeah um co-organized an event with Jim LeBrecht last week at the Academy Museum and in Los Angeles. And there's a whole group of us that did a panel discussion on disability representation.
00:55:58
Speaker
And I half-joked when i when i when I came out on stage off the cuff. So what do you call a group of disabled people who come out on stage together, right? And they kind of gave it a beat. You know, you've got to gaggle the hens, you've got a murder of crows, right? What do you call a group of disabled people who kind of show up in the same space? So after giving it a pause,
00:56:19
Speaker
I responded, a telethon, right? and And everybody kind of joked. And and um that's something that we can own now, and we can play with, and we can have fun with, right? the week We're no longer embarrassed. We're no longer ashamed. And we can sort of take those things and flip them back on the world from our own points of view and from our own perspectives. And I think those can help.
00:56:43
Speaker
um yeah shatter and illuminate right the the assumptions that that that people might bring that they haven't even examined before. Oh, that's it's such a good segue into our closing question, because when you brought up a telethon, I thought of you know all the fundraisers and you know for children's hospitals across the United States. I myself have almost been a poster child at some of those events for fundraising. And so I think, you know,
00:57:12
Speaker
that's It's a huge piece right because a lot of that goes into the healthcare that we have. um so What's it the number one thing you want to see changed about healthcare for adults with CP8? Lawrence, I'll send it to you.
Healthcare for Adults with CP
00:57:26
Speaker
Yeah, you'd see I'm chomping at the bit over here. Acknowledgment that it's real, acknowledge that we need it.
00:57:34
Speaker
ah dig you know Like I was saying earlier about who's in leadership positions and where's your budget, the same needs to be done for healthcare, oh with adults with all kinds of disability, but specifically in my case, cerebral palsy. What we talk about happening in the area of education, when someone hits a certain age, 18 in some places, 21 in others,
00:57:58
Speaker
They say they fall off the cliff, right? That they're disregarded and that they're those so same supports and resources that they grew up with are no longer available. Something very similar, very parallel happens in healthcare. You get outside, you know, you become an adult and all of a sudden your medical team doesn't know what to do with you and there aren't studies, there isn't research, there isn't information where they can go, well, for 35 year old women with CP, there's this and this, right?
00:58:27
Speaker
There's no data that has occurred more times than I can count. As I move, as I change jobs, as I change cities, as I, as I go to different states, I have to retrain my medical team all over again. And so, ah you know, for me, ultimately just acknowledging that disabled adults and adults with cerebral palsy exist and that we need to put some time, resources, energy and attention to them but in and of itself would be a great leap forward.
00:58:57
Speaker
Yeah, so we don't have to be the educators when we're at appointments, right? I mean, I'm, you know, in the location that I am, I'm lucky enough to be able to get to New York City to see a specialist. And that is not the case for so many adults living with CP, especially in more rural areas. They have to fly to New York City to get healthcare with one of the handful of few doctors that treat adults with cerebral palsy.
00:59:22
Speaker
um So it's just so few and far between. And if I didn't spend literally weeks of research, I wouldn't have found the doctor that I have today. So it it just spans so far across that experience.
00:59:37
Speaker
I'm going to email you and get that doctor's name. oh works ah Yes. No, we're serious because because they're the, you know, that is kind of like the unicorn in my world. Right. And and, you know, those things, yeah, should definitely be. ah the rule rather than the exception. Yes. And you are so involved in the community. So for you not to have a resource like that blows my mind right there that like you in California can't find a healthcare provider.
01:00:08
Speaker
Wow. Emily, anything that you'd like to add just from the disabled experience? Yeah. So I think in general for disabled adults, finding informed healthcare providers is such a challenge and I am currently in the position of having to find new doctors because I relocated recently and I have this deep fear and that is someone or rather coming from someone who spends all day every day educating about disability and I'm worried about going to find new doctors because I wish that was one of the safe spaces where I would not have to
01:00:55
Speaker
educate them further about disability and about etiquette in general. But I want to differentiate here that while I wish I didn't have to be the educator about disability more broadly and how to engage with an adult human who is disabled,
01:01:15
Speaker
I think there's something to be said for doctors taking the time to sit back and to listen to people advocating and sharing their own stories and telling you what it is they need.
01:01:29
Speaker
I've gone to so many doctors where they're like, I've never heard of your disability. It's Larson syndrome. And I'm like, oh, haha, we just got a Wikipedia page a few years ago. But do you know I've been making that joke for like 15 years now? I'm tired of making people feel better about it. Like it doesn't matter if you don't know the specifics. What matters to me is that you're willing to learn my story about my disability.
01:01:57
Speaker
So I don't want to teach you about etiquette, but I do want to teach you about what it is that I need. So I hope that differentiation is clear. Listen to me about what I need, but I hope that you will come in and already know how to treat me like a human being. A hundred percent. I couldn't agree more.
01:02:13
Speaker
and that's That's a huge thing. I'm not asking, I know these providers are packed to the gills with um appointments all day, so I'm not asking them to take that additional time to research me specifically, but exactly like you said, letting you bring your perspective and say, this is what I need, and then say, okay, this is how we can take care of you.
01:02:33
Speaker
um It's something that is so powerful and I think that we often get overlooked. And I think, you know, even as a woman in that perspective too, when we go with certain issues that we have, they're overlooked as generic symptoms for other things. um So to be able to go and have someone listen to you in your experience, you know, I've had providers that have, you know, come in five minutes in and out, we're all set. And, um you know, with certain providers and specialists,
01:03:01
Speaker
sit in the room with me for over an hour. And I think that that's something that's just, it opens your mind to say, wow, you actually took the time to get to know me and also find how to best treat me. And who knows how that'll affect that ripple effect of other patients that come in with something similar.
01:03:17
Speaker
Well, I think that we can all talk on this conversation probably all evening um but I can't thank you both enough for bringing your perspectives today and um i'm I'm looking forward to getting this story out into the world because I think for a lot of individuals with CP Coming into the fold to say where should I be an advocate? Where can I be an activist and how can I get my story out there? There's so many avenues and I want to make people feel comfortable. So thank you both for being here today Thank you. I really appreciate it. It's been a blast. Yeah, this was fun. Thank you for having us. Thank you for listening to this episode of Sururupulze Grows Up, the podcast. The show was produced by Ashley Harris Whaley, Katie Gastra, and Kyle Kechidorian, hosted by Alexa Orban, and its logo was designed by Brianna Rachi. We'd like to thank our listeners for being a valuable part of our community, and we'd like to thank Lawrence Carter-Long and Emily Liddell for their time and expertise. Please don't forget to subscribe and write Sururupulze Grows Up, the podcast from wherever you get your podcasts.
01:04:18
Speaker
And please follow atsruf while he grows up on Instagram and TikTok to connect with the project and save the day. Thanks again for listening, and we hope you'll be back for our next episode.