Disability Deep Dive Podcast

Episode Transcript

Jodi Beckstine (00:00:18):

What does it mean to wear your values out loud? Today, we're talking about fashion, disability culture, pride, and the power of community. We're also looking at how clothing can become more than something special we put on. It could be a message, a form of care, and a way to say, "We're still here."

Keith Casebonne (00:00:36):

Welcome to Disability Deep Dive. I'm Keith.

Jodi Beckstine (00:00:38):

And I'm Jodi.

Keith Casebonne (00:00:40):

Today, we're talking with Meier Galblum Haigh, executive director of Disability Culture Lab. Disability Culture Lab's summer collection, We Are Still Here: Fashion Against Fascism, was shaped by conversations with more than 40 people with disabilities about community, joy, safety, and what disabled liberation can look like.

Jodi Beckstine (00:01:00):

The collection features work by disabled artists and designers with messages that speak to pride, connection, and the right of people with disabilities to be seen, valued, and protected. It reminds us that disability culture is creative, powerful, and very much alive.

Keith Casebonne (00:01:15):

Yes, indeed. Let's dive in with Meier Galblum Haigh.

(00:01:21):

Before we jump in, I'm Keith. I'm a white man with brown eyes, brown hair, and a graying beard. I'm wearing a black shirt with a blue pattern.

Jodi Beckstine (00:01:29):

And I'm Jodi, a white woman with dark blonde hair, and I'm wearing a red and white striped shirt.

Keith Casebonne (00:01:34):

Meier, if you're comfortable, we'd love to invite you to visually describe yourself for our listeners as well.

Meier Galblum Haigh (00:01:39):

Hi. Yes, I am Meier, and I am a white transmasc human, and I am wearing a black T-shirt and glasses, and I have short, dark, curly hair.

Jodi Beckstine (00:01:51):

Great.

Keith Casebonne (00:01:51):

Cool.

Jodi Beckstine (00:01:52):

So to start us off, could you introduce yourself to our listeners and maybe share a little bit about the work you do as the executive director of Disability Culture Lab?

Meier Galblum Haigh (00:02:02):

Yes, I can. Well, first off, just thank you so much for having me. I'm so excited to be here. I'll start off just by saying Disability Culture Lab is a nonprofit disability media and narrative lab. I'll start from the place by saying that we love disabled people. I love disabled people.

Jodi Beckstine (00:02:20):

Yeah.

Meier Galblum Haigh (00:02:20):

That's who we are.

Keith Casebonne (00:02:21):

We do too.

Meier Galblum Haigh (00:02:25):

We exist to celebrate disability culture, disabled people, and to fight ableism. We're building out communications infrastructure by and for disabled people because bad stories lead to bad policy. For so long, we've had bad stories about disabled people that have been told. That's what I grew up on. I think that's what a lot of us have grown up on. As we know, it's led to a lot of really awful policy for a lot of years, and we haven't had real investment in our storytelling infrastructure really since the passage of the ADA, if not before, and we deserve to be able to tell our stories on our terms ourselves-

Jodi Beckstine (00:03:08):

That's right.

Meier Galblum Haigh (00:03:09):

... and that's what we're trying to do.

Keith Casebonne (00:03:11):

Awesome. Well, part of telling stories I think is a good segue to talk about Disability Culture Lab's new summer collection, which is called We Are Still Here: Fashion Against Fascism. What was the starting point for this collection, and what made it the right moment to create it?

Meier Galblum Haigh (00:03:30):

Yes. Well, when we're talking about telling stories, we want to tell stories across the board. We do a little bit of PR, and we do some stuff online, and we do digital stuff, and we work with creators, but art is a really big part of storytelling. And I think sometimes we leave art out, but the reality is that art is how we see and feel and experience the world and joy and liberation. And if you really want to talk about changing things, you have to be able to see and feel and imagine it. However it is that you experience the world, because obviously we all experience it differently, you don't have to be able to do one of those things. We all experience the world in some way, and art is one of those ways. And so Fashion Against fascism is that for us.

(00:04:26):

This particular line started with this beautiful North Star visioning process that we've been doing across the disability community. About a year ago, we were in this moment in time where we were looking around us and we said, "Okay, we're doing a lot of resistance. We're sort of moving from funeral to funeral. We're doing a lot of mourning. We're moving from crisis to crisis and mutual aid to mutual aid. I think each of us had lost a lot of folks."

(00:04:59):

Sometimes we were doing multiple mutual aids at once. It just felt like we were bogged down from crisis, and we were like, okay, if we're just moving from between rapid response and crisis and incrementalism, all we're doing really is sliding backwards in the disability. We're never really moving forwards. What we really need is space to be able to imagine what winning looks like. And if when we are trying to move forward, we don't know what winning is, then what are we moving towards? And if we just, as, whatever, the five of us that exist at the Disability Culture Lab, say, "Okay, this is what we think winning looks like," what does that mean? What does winning looks like, right?

Keith Casebonne (00:05:42):

Yeah.

Meier Galblum Haigh (00:05:43):

Sure, what Meier thinks winning looks like, great for me, but actually not that helpful. We said, "What if we brought together a lot of folks from across a lot of different spaces and brought them together and could really figure out what winning looks like from a lot of folks from across a lot of different vantage points?" So we brought together folks from across a lot of different disability justice spaces, disability rights spaces, artists, academics, folks who've been in their thoughts, to be frank, and then also folks who've been doing the doing, organizers and activists and mutual aid organizers, et cetera, et cetera, et cetera, thinkers and doers, et cetera, and we all came together, and we had six different sessions.

(00:06:23):

First, we had a big kickoff meeting where we had maybe 50 or 60 folks on. We did a lot of thinking of who should be in the room. We probably did two months of just nominations, folks who should be in the room. Then we did a big kickoff meeting. We were really honored to have even some incredible folks like Alice Wong on the call for the kickoff meeting. We wish she have been there for the entire process. And then we did six sessions with 10 to 12 folks on each of those sessions, where folks just sat and said, "Okay, what's winning look like?" We did small groups in that kickoff meeting. And then we did these sessions where we just said, "Okay, what's winning look like? What are the myths that we're up against? What's the problem that we're trying to solve in the world, things that we really want to see if we could imagine anything, if we had liberation, if we really had freedom?" And we took notes.

(00:07:13):

Some of those groups appointed a community editor that could represent them in the editing process. And then those community editors, over the course of three or four months, boiled down all of that into this North Star vision. And we took some of the big ideas that came out of that, and we turned that into art. Some of that art represents the problems that we're trying to solve and the world that we're in, and some of it represents the vision of liberation that we want to see in the world. And that's how this collection came about. I'm wearing one of those shirts today, which is a beautiful piece by Johnnie Jae, who's an amazing queer indigenous artist out of New Mexico that we call Oppression is Disabling, and it says, "Colonialism is disabling, capitalism is disabling, racism is disabling," just circling through, and it's this beautiful sunlight design that's so cool.

Keith Casebonne (00:08:12):

Yeah, it's beautiful. It's cool. Yeah.

Meier Galblum Haigh (00:08:14):

Whenever I'm wearing it in public, people are like, "Oh, wait, I get it."

Keith Casebonne (00:08:19):

Cool. Hey, that's the point, right?

Meier Galblum Haigh (00:08:21):

Yeah, the whole [inaudible 00:08:22].

Keith Casebonne (00:08:21):

Yeah.

Meier Galblum Haigh (00:08:24):

This is so gorgeous. And then some of them, there's one that's this great piece by Sky Cubacub that just says, "Interdependence is revolutionary." That was one of the big things that came out that DJ can ground us in this moment that diversity alone is not going to help us fight against fascism. What we really need is diverse interdependent communities in this moment to fight back against fascism and that disability justice actually gave us the seeds to fight back against this moment, and we need to learn those lessons right now, and that is how we actually start fighting back is by weaving interdependence into our communities, not diversity alone.

Jodi Beckstine (00:09:04):

Yeah, absolutely.

Meier Galblum Haigh (00:09:05):

So there's a lot of really beautiful stuff that came out of this that I think are lessons for across the progressive movement, not just a North Star for our own community and the disability community.

Jodi Beckstine (00:09:13):

Sure.

Keith Casebonne (00:09:14):

Excellent. That's so cool.

Meier Galblum Haigh (00:09:15):

Not quite.

Jodi Beckstine (00:09:16):

You said that this collection came out of these big conversations with this group of people. What were some of the themes, hopes, or concerns that kept coming up in these conversations?

Meier Galblum Haigh (00:09:31):

I mean, a lot of them we put on shirts, which is exciting, so you can see them out there. And then some of them were... It was interesting. I think this piece of interdependence and care, I think, was so important that disabled people are both caregivers and care receivers and that both have value and that if we see the equal value in both, that we can start to build this interdependence into our communities, and that is actually how we fight back against fascism and authoritarianism. And if we ignore that, then we lose. And I think that actually was really wove across a lot of our different spaces, that people deserve meaningful work regardless of whether or not we can earn a wage.

(00:10:17):

I think it's really powerful and really important that folks want to be able to meaningfully contribute to our communities even if we can't earn wages and that we have value regardless of whether we're giving or receiving care within our communities and that when we build that in, we have better and more meaningful lives. All of us, whether we're giving care, whether we're receiving care, whether we're in a community that has care that is being given or receiving, that this care economy is actually... Whether it's an economy or not, this care community is actually a huge part of what it means to build meaningful communities and joyful communities.

(00:10:51):

I think sometimes folks try to separate that out into something that's separate then where it's just a piece of the world, but it's actually this core of everything, I think, that we are. And then there were things that just blew everything up, and one thing that just blew everything up in every discussion and derailed every conversation, non-disabled parents... Yeah, that continue when non-disabled parents came up. I think there's a lot of pain in our community about certain topics and non-disabled parents speaking on behalf of disabled people. And I think especially in the influencer space, in the public space, and the kind of negative narratives that have been put forward by non-disabled parents, so much deep pain, I think, in our community by some of these harmful myths that have been put forward by certain members of our community that have oftentimes been put forward as allies, but in reality have caused just immense pain.

(00:11:54):

I think there are a lot of lessons there even within our own community of what does it mean when we feel like we have allies and what does it mean to show up with folks who say that they're allies. Maybe we need to do a little bit more challenging even within disability spaces when we see bad narratives that are causing harm because that harm is so deep. I think probably half of our sessions were just derailed for more than half an hour of just pain. We just needed a holding space for the pain.

Keith Casebonne (00:12:19):

Oh, gosh. Wow. It sounds like some of those sessions were really interesting and really intense. Wow.

Meier Galblum Haigh (00:12:29):

You learned a lot.

Jodi Beckstine (00:12:29):

We did.

Keith Casebonne (00:12:29):

I learned a lot, yeah.

Meier Galblum Haigh (00:12:30):

A lot.

Keith Casebonne (00:12:33):

For sure. Well, one thing you touched on a little bit was the shirt designs that came out of this. So a lot of the designs used very direct public messages such as disabled joy is revolutionary, love disabled trans folks out loud, build disabled community power. How did y'all think about turning these big community ideas into these messages that people can now actually wear?

Meier Galblum Haigh (00:13:00):

I think a lot of it had to do with plain language. What does it mean plain and compelling language? Our editors helped a lot when we were boiling stuff down. We started by just being like, "Okay, where are the themes that we're seeing across all of these sessions?" Because we have a lot of content, obviously. You're talking about what do you see that's being repeated across a lot of spaces, and disabled leadership, disabled power, that was huge. People want representation, but folks want more than representation. Representation is not enough, which is I think why we had build disabled community power there. Folks don't want representation. They want representation that includes our ideas and our community's power being built, right?

Jodi Beckstine (00:13:48):

Yeah.

Keith Casebonne (00:13:48):

Yeah.

Meier Galblum Haigh (00:13:49):

Yes, and we want representation that includes our vision for liberation. I think that there's a step beyond representation that we're in in this moment, and we tried to capture that in the way that we had our shirts, and I think that's the same with interdependence. It's like, "Yes, we want interdependence, and..." Interdependence means something in this moment beyond interdependence for interdependence's sake, that, in this moment, interdependence is not just survival for disabled people. It might be survival for all of us if we want to move beyond authoritarianism, and authoritarianism might not just mean the end of our democracy as we know it, but also maybe the end of our planet as we know it, to be frank.

Jodi Beckstine (00:14:33):

Yeah, well-

Keith Casebonne (00:14:33):

That's sadly true. Yeah.

Meier Galblum Haigh (00:14:36):

And if we want to fight back against this, interdependence is revolutionary for us as individuals. The way that we view ourselves, the way that we view our communities, the way that we view how we fit in, it's not just about independence. Independence isn't as revolutionary, I think, as the right wants us to believe it is. Bootstraps isn't actually a revolutionary idea. None of us got here alone. And trying to valorize that, it's not so cool. To be frank, you never did it alone. None of us did it alone. And I think it is ultimately a very eugenic idea that bootstraps are somehow a cool thing that you could pull yourself up alone, because no one ever did it in the first place, and it was never true. You always had public roads, you always had public infrastructure, public internet, public power, public everything that got people to where they are, families, communities, investment in white wealth by governments over many years. That interdependence is what has made any person who has immense wealth succeed, and everyone deserves the investment of their community and interdependence, and it shouldn't be exclusive to one group of people.

Keith Casebonne (00:15:46):

Right.

Jodi Beckstine (00:15:46):

Yes.

Keith Casebonne (00:15:47):

Right, there is-

Jodi Beckstine (00:15:55):

Well, my favorite is disabled joy is revolutionary because as someone relatively new to the disability rights space outside of my own area, I had a lot of internalized ableism and not a lot of joy in it, and I'm learning that and learning for myself and being able to put that out there. So that shirt is just my absolute favorite.

(00:16:26):

Fashion is often treated surface level, but clothing can also be about safety and identity and pride. How do you see streetwear helping people with disabilities claim public space?

Meier Galblum Haigh (00:16:39):

Yes. Well, first, I just want to say joy went through almost every group that we were in. I think that's so important because I think a lot of us were told a story, any of us who are young and disabled, but also anyone who becomes disabled later in life also where it's like, "Okay, now you need to focus on your basic needs, and that's all you get." I think I fall into this trap also even as somebody who's spent a lot of years doing therapy trying to get over it where you're like, "Hey, now, I'm just going to ask for my basic necessity. I'm going to ask for a new scooter for the holidays instead of asking for anything else." You know what I mean?

Jodi Beckstine (00:17:20):

Right.

Meier Galblum Haigh (00:17:20):

"Because I need this basic necessity," and other people are asking for a massage or something or for joy, not a medical massage, and I'm like, "You know what I really need is wheels so that I can pick up my daughter from daycare." This joy really ran through almost every session of like, "No, we need more." And joy is actually a fundamental piece of dignity. It's a piece of what it means to live a dignified life. We need more than bread. We need bread and roses. You know?

Jodi Beckstine (00:17:52):

Yes.

Keith Casebonne (00:17:54):

Yeah.

Meier Galblum Haigh (00:17:54):

Unity and joy being... We're really critical across all of this that all of these pieces were critical, and so much of disability infrastructure in the United States is built to deny disabled people joy, and that we deserve more.

(00:18:13):

Sorry, I just wanted to say that first. And then I think it's important... To your question real quick. I apologize.

Jodi Beckstine (00:18:17):

No, I love it.

Keith Casebonne (00:18:20):

No. No, no, great points.

Meier Galblum Haigh (00:18:21):

Can you repeat the question part of that though?

Jodi Beckstine (00:18:23):

How do you see the streetwear helping people with disabilities claim public space?

Meier Galblum Haigh (00:18:28):

Yes. This is one of my favorite pieces. And then I think a piece of that is there are ways that people see us when we show up in public. I'm a visibly disabled person now. I've spent a lot of my life being not visibly disabled. I've been visibly disabled for seven years now. I've been invisibly or unapparently disabled for my entire life, though disability has been a huge shaping force in my life, and I'd say probably the most dominant force in my life.

(00:19:01):

It's definitely what radicalized me as a kid was I'm part of the ADA generation, but I was not able to access public education because of my public schools in rural Alaska where I grew up not being willing to honor the ADA as it stood, and I was almost kicked out numerous times of school because I couldn't get in in the way that my body needed to get in and I wasn't given accommodations that I needed to stay in public school. And so I was separated from my family when I was 14 and institutionalized instead at a private school in the lower 48, and that really shaped the way I thought about everything.

Jodi Beckstine (00:19:41):

Sure.

Keith Casebonne (00:19:41):

[inaudible 00:19:43].

Meier Galblum Haigh (00:19:44):

I think for me, now, disability fashion and having a disability streetwear brand is like people see me and they read things into me when they look at me, and I like to be able to have my own definition of what disability means on my chest. You know?

Jodi Beckstine (00:20:03):

Yeah.

Keith Casebonne (00:20:03):

Yeah, yeah.

Meier Galblum Haigh (00:20:04):

My own words front and center because folks read so much into what it means that I'm disabled. They read different things into my gender identity. They read different things into what it means that I am disabled. I like to talk about the jump scare of the, "What happened?" or-

Jodi Beckstine (00:20:22):

[Inaudible 00:20:22].

Meier Galblum Haigh (00:20:24):

That comes out almost anywhere you go or that I can see people that I have known for 20 years of my career and I'll wave at them, folks I knew from before I was in a chair, and they won't recognize me because all they see is the chair.

(00:20:39):

I think that the shirts for me are a way to define my disability identity on my own terms, and I think it's something that folks don't expect, but that allows me to have, for me, a political identity around what disability means to me. And I think for a lot of folks with non-apparent disabilities, it's a way to have a disability identity when it might not be read onto you if that is something that is important to you, especially at times when you're okay with being read to have it, whether that is a solidarity identity or it is a personal identity.

(00:21:15):

It kind of reminds me of I'm also a trans person and I'm now fairly visibly queer, to be frank, but I have not always been visibly. Before I came out as trans, I was still a queer human. I've been out as pansexual since I was bisexual, if you're older, since I was a teenager. People are always like, "But how do I look that way if I'm not super visibly so?" And you're like, "Well, you could wear a rainbow." You know?

Jodi Beckstine (00:21:49):

Yeah.

Meier Galblum Haigh (00:21:49):

And I think that's also disability streetwear, right?

Jodi Beckstine (00:21:49):

Yeah.

Keith Casebonne (00:21:49):

Right, right.

Meier Galblum Haigh (00:21:50):

How do you identify as disabled if I don't have a visible disability? It's like, "Well, you can wear a shirt if you want to be identifiable to other community." And that's the case in the queer community, you can wear a shirt that says, "I'm gay," and people will definitely know to hit on you, that has disability community stuff, and folks will definitely know you're in community. And I think also part of disability streetwear is a political identity that allows you to build community, and that's important too.

Jodi Beckstine (00:22:20):

Well, I've always loved to wear graphic shirts because I... And I say this to my family a lot, if people are going to stare at me, at least they're going to get a message. Instead of just a free look at my body, they're going to get the message of what's in my head too. So I love the use of graphic shirts and stickers all over my scooter just to say, "Well, if you're going to look, look at this."

Meier Galblum Haigh (00:22:43):

I love that so much. I've talked to Nikki Brown-Booker at Borealis about this a lot, what does it mean to be a spectacle? Sometimes I'm still coming to terms with that, like I am the only... Oh no, I'm one of two very visibly disabled parents at my daughter's school, and everyone knows who I am, but I don't know everyone's names. But they all recognize me, and I'm like, "Why does every... Oh, right," because there's two of us on wheels. And I feel very much at a disadvantage, but sometimes I'm like, "Maybe I don't want to be a spectacle, but I can't opt out of reality." If I'm going to be a spectacle, I love how you're saying that, if you're going to be looking, I deserve for you to look on my terms.

Jodi Beckstine (00:23:35):

Yeah.

Meier Galblum Haigh (00:23:36):

Yeah.

Keith Casebonne (00:23:37):

Yeah, that's brilliant. That's brilliant. Well, to even expand on that further, some of the designs in your collection speak to people with disabilities who... some of this, we've already talked about a little bit, people who are also LGBTQ+, immigrants, Black, indigenous, people of color, or parts of other communities that face harm. So why was it important for this collection to show that disability is directly connected to these many different lived experiences?

Meier Galblum Haigh (00:24:09):

I mean, for us, that's everything. I'll start by saying for me. Over 50% of trans people have a disability. There are a lot of people who want to spread misinformation right now, and I won't even say just on the right. I think across the entire political spectrum about trans folks saying that there's something wrong with trans people, and they say, "It's mental health stuff, or it's this, or it's that." The reality is that when you look at the actual disabilities amongst the trans community, you've got connective tissue disabilities, you've got autoimmune disabilities, higher rates of cancer, higher rates of heart disease, higher rates of almost every disability caused by inflammation because the actual stress of transphobia is disabling. It's incredibly disabling. There is nothing wrong with trans people. Transphobia is disabling. Trans people are incredible, resilient, and should never have to be.

Jodi Beckstine (00:25:19):

Absolutely.

Meier Galblum Haigh (00:25:21):

Transphobia is toxic and awful, and that doesn't count hate crimes and all the other ways and increased policing and incarceration and violence and interpersonal violence that trans folks face in addition to everything else, and that's the same across the board. When you look at marginalized folks, the disability rates rise. When you look at multi-marginalized folks, those disabled rates rise higher and higher and higher. So when you look at Black women and indigenous women, rates rise to over 30%. When you look at women, higher rates than men.

(00:25:53):

When you look at almost every multi-marginalized population, the rates go up. And when you look at intergenerational marginalization, the rates go up. And the research shows that inflammation is probably a huge cause of that, and that the disabling effects of oppression increase over generations in part because of what happens when folks are pregnant and have faced the stress of oppression. How that affects what happens in the womb, that keeps going. And also, just because of the day-to-day, the risks that you face being an oppressed person in the United States, from police, from state violence in the workplace, from forced poverty, et cetera, et cetera. Ableism itself is disabling too. Once you are disabled by oppression, ableism itself is another form of oppression that is disabling.

(00:26:47):

For us, we don't want to leave that unsaid because when you have bad stories about something, it leads to bad policy. If the story about disability is disability is an accident and it can only be fixed with GoFundMes and people just need money and then it's fixed, then the answer is a GoFundMe. But if that is not the case and the actual problem is that many people enter disability through political choices of folks with power, folks with money, folks with influence, then the answer is not a GoFundMe. The answer is actually different political choice. The answer is organizing, the answer is power building, and the answer is different stories, and a GoFundMe alone isn't going to fix it.

Keith Casebonne (00:27:40):

No. No.

Meier Galblum Haigh (00:27:43):

And so we have to tell different stories. And also, we deserve joy and revolution and representation, and we have to tell the stories of folks who've been most impacted by a lot of these systems. Multi-marginalized disabled folks, which is our whole team, [inaudible 00:28:04] and disabled team, trans folks and Black and brown folks, we deserve to have representation in the disability community at the same rates at which we've been disabled by the systems in the United States.

Jodi Beckstine (00:28:18):

Absolutely.

Keith Casebonne (00:28:19):

Indeed, indeed.

Jodi Beckstine (00:28:20):

Absolutely. Well, to touch on the joy again a little bit, the collection is so great because it holds joy and resistance at the same time. How do you keep joy from being treated separately from serious advocacy, especially when people with disabilities are facing real threats to rights and services and their own safety?

Meier Galblum Haigh (00:28:45):

I mean, I think they just go hand in hand. I don't think you can separate it. At the end of the day, we have this conversation internally at our organization all the time, especially for multi-marginalized disabled folks, I think really almost all disabled folks, we get that our lives are on the line, right?

Jodi Beckstine (00:29:06):

Yeah.

Keith Casebonne (00:29:06):

Mm-hmm.

Meier Galblum Haigh (00:29:08):

We're here, we're living it. We're in crisis. We're trying to balance a care budget that exceeds our rent and our mortgages. I had two friends thrown off Medicaid last week, one of which, I think has dual citizenship in Canada, is moving, and towards whom doesn't know where they're going to get caregivers now. We're in crisis. We don't need anyone to tell us there's a crisis. I think the model of there's a crisis, everyone turn out, is so important for folks who are coming from a place of deep privilege. I don't think you can touch that. I get it for a mobilization point of view for folks with privilege. And I think for folks that are already be in crisis, we've got folks that are on the edge, who are in mental health crises because of that edge. And the mental health crisis is not separate from that edge, it's legitimate. It's like, "I don't know if I can afford to live anymore," and we're seeing that in Canada right now where people are choosing death because they can't afford to live. It's irresponsible to meet people with despair when they're in despair.

(00:30:31):

Our folks need a joy break, and we can give folks joy and then organize around a shared understanding of the crisis that we're in without needing to bombard people with a deeper understanding of crisis. We know. From our perspective, the joy is essential for being able to do the imagining of what winning looks like. And when we bring people together and do that imagining of liberation, for a lot of folks, it was the first time they were ever given space to imagine winning. They have lots of space to imagine the despair. We have lots of space to imagine the crisis. We got that down. We're on it.

Keith Casebonne (00:31:14):

Right, right, right. We got that.

Meier Galblum Haigh (00:31:16):

We're well educated on the crisis, and we need space for the joy, the imagining of winning. We need space to come together on that joy, and then we can organize together. That's what we need. And I think different communities need different theories of change, so to speak. I know that's a sort of academic-y term, but not everyone needs to organize in the same ways to win. We all can work together towards winning, and we all have different ways of doing that, communicating.

(00:31:51):

At the Disability Culture Lab, we work across the community, we're building communications infrastructure across the disability community. So when we're working with disability rights groups, we don't necessarily need to work from a place of joy first. Sometimes they're organizing in communities with wealth, and we can just say, "Okay, great, let's define the crisis. Let's define your community. We can help you figure out how to communicate in that group." But when we're working in multi-marginalized disabled communities, no, we're going to start from a place of joy. We're not going to go into our own communities where folks are in crisis and say, "Did you know that you're dying?"

Jodi Beckstine (00:32:33):

Yeah, right.

Meier Galblum Haigh (00:32:33):

You know?

Keith Casebonne (00:32:33):

Right.

Meier Galblum Haigh (00:32:34):

Do you Know your friends are being arrested? On it. We got it. Let's get a little joy in our lives, and then we can come and organize together. I think we need both.

Jodi Beckstine (00:32:45):

Yes.

Keith Casebonne (00:32:46):

Yeah. Yeah, I agree.

Jodi Beckstine (00:32:47):

Yes.

Meier Galblum Haigh (00:32:47):

We deserve both.

Jodi Beckstine (00:32:49):

Definitely.

Keith Casebonne (00:32:49):

Yeah, indeed. Yeah, indeed.

Jodi Beckstine (00:32:52):

Definitely.

Keith Casebonne (00:32:52):

Yeah. No, I love that answer. I love that. Well, before we wrap up, listeners of the show know that we have a second segment called our Deep Cut, where we talk about media in disability spaces, and we like to ask our guests for their own deep cuts. Is there a film, a TV show, song, fashion project, artist, performance, any piece of media that has really resonated with you lately that you'd love to share with our listeners?

Meier Galblum Haigh (00:33:23):

I have two right now that I've been really into, if you don't mind.

Jodi Beckstine (00:33:28):

No, please.

Keith Casebonne (00:33:28):

Please. No, no, no, it's great. Yeah, yeah, more is better.

Meier Galblum Haigh (00:33:32):

The first one, my favorite rolling anthem right now is ExtraL by Jennie and Doechii. I've just been really loving... I think everyone deserves a rolling anthem if you're on wheels.

Jodi Beckstine (00:33:43):

Yes.

Keith Casebonne (00:33:44):

Nice.

Meier Galblum Haigh (00:33:45):

There's this line in it. It's "Top down, foreign cars, staring at the stars." Now, my mobility scooter is made in China, so my top is always down, and I have a foreign car, and I can always stare at the stars. So I feel like I live my best life per Jennie and Doechii's dreams.

Keith Casebonne (00:34:08):

Love it.

Meier Galblum Haigh (00:34:09):

I really enjoy it. And Doechii, with her Anxiety song, is also a great disabled icon.

Jodi Beckstine (00:34:15):

Yes.

Meier Galblum Haigh (00:34:17):

I just love that song and I love blasting it while riding my mobility scooter. I'm supposed to listen to microphones while I'm in the bike lane, but also I don't know if anyone else has this issue while scooting around town or wheeling around town, but sometimes people yell slurs at me. So I feel like it's better for my mental health to just have headphones on.

Keith Casebonne (00:34:42):

There you go. Sure. You're right.

Meier Galblum Haigh (00:34:43):

That's a cool decision. Everyone can make their own choice for their health and safety, but the trade-off of my health and safety of having the headphones on is just better for me.

Jodi Beckstine (00:34:50):

Yeah.

Keith Casebonne (00:34:51):

Got you. Got you.

Jodi Beckstine (00:34:52):

I can see that.

Meier Galblum Haigh (00:34:53):

And then just for a movie, it's making the festival circuit right now, but Ai-jen Poo and Lydia Storie have a new documentary that they are co-producing right now called Take Me Home that is so beautiful. It's a new documentary on care, an amazing woman, whose name I'm forgetting at this exact moment in time, forgive me, but please look it up, on her care journey as a caregiver for her parents.

Jodi Beckstine (00:35:23):

Oh, wow.

Keith Casebonne (00:35:24):

Interesting.

Meier Galblum Haigh (00:35:25):

Not as a care receiver, but also care getting, care receiving, but the sort of circle of what it means to both give and receive care.

Jodi Beckstine (00:35:34):

Nice.

Keith Casebonne (00:35:36):

All right.

Meier Galblum Haigh (00:35:38):

We talked about this a lot actually in the disability North Star visioning sessions of what it means to give, get, and exist in the care space all at the same time. And we're really excited about this film that's currently on the festival circuit, but hopefully it will still be available for all of us to watch.

Jodi Beckstine (00:35:59):

Yeah.

Keith Casebonne (00:36:00):

Yeah. Oh, gosh, can't wait.

Meier Galblum Haigh (00:36:02):

It also [inaudible 00:36:02] Center for Race and Disability Justice, the care club sandwich instead of the sandwich generation, the club sandwich generation.

Keith Casebonne (00:36:09):

There you go.

Meier Galblum Haigh (00:36:12):

I know. Take Me Home, I'm very excited for it to come out to wider release.

Jodi Beckstine (00:36:13):

Yeah.

Keith Casebonne (00:36:18):

Cool. Yeah, me too. Wow. All right.

Meier Galblum Haigh (00:36:18):

Two deep cut, look that up.

Jodi Beckstine (00:36:19):

Two good choices.

Keith Casebonne (00:36:21):

Great answers. Love it. Absolutely. Absolutely.

(00:36:24):

Well, Meier, thank you so much for being our guest. You really exude the things that you talk about, which you've... I see the joy, I can feel the joy in you, and then also that resistance and that strength. So we're so glad you're out there fighting the fight, and thanks so much for being on our show. We appreciate it.

Jodi Beckstine (00:36:43):

Thank you so much.

Meier Galblum Haigh (00:36:45):

Thank you to you both, it was so amazing to be in community with you both today, and thank you to everybody who's tuning in. Please come follow us at disabilityculturelab.org. We're over on Instagram and Blusky, and we've got an amazing shop over at shop.disabilityculturelab.org. We'd love to stay in community with all of you also.

Jodi Beckstine (00:37:04):

Yes.

Keith Casebonne (00:37:04):

Excellent. Very cool.

Meier Galblum Haigh (00:37:05):

Thanks.

Keith Casebonne (00:37:05):

We'll have links to all of that in our show notes, so excellent.

Jodi Beckstine (00:37:08):

Absolutely.

Keith Casebonne (00:37:09):

Great.

Meier Galblum Haigh (00:37:10):

All right.

Keith Casebonne (00:37:10):

Bye. Thank you.

Jodi Beckstine (00:37:12):

Thanks.

Keith Casebonne (00:37:15):

Let's take this dive a little further. Deep Cut ahead.

Jodi Beckstine (00:37:24):

For today's Deep Cut, we're talking about the Netflix limited series All the Light We Cannot See. This story follows Marie-Laure, a young woman who is blind, living in occupied France during World War II.

Keith Casebonne (00:37:35):

This series has received a lot of criticism, including around storytelling, pacing, and representation. So today, we want to look at it through a disability lens and ask what it shows, what it misses, and what larger conversations it opens up.

Jodi Beckstine (00:37:47):

The series made an important choice by casting actors who are blind or have low vision as Marie-Laure. At the same time, the show also faces criticism, how blindness is portrayed, and how fully the character is developed. That seemed to give us room to talk about both things at once, the value of authentic casting, and the need for disabled characters to be written with agency, complexity, and care.

Keith Casebonne (00:38:09):

Yeah. So today, we are talking about All the Light We Cannot See as a complicated media pairing. It gives us a chance to talk about blindness on screen, access for audiences, and the larger history of how people with disabilities were treated under fascist systems.

Jodi Beckstine (00:38:25):

Okay. One of the most important choices that the series makes was casting Aria Mia Loberti and Nell Sutton, actors who are blind or have low vision, as the main character, Marie-Laure. That's so important. We've talked about that before. But the series also got criticism about the storytelling and pacing and representation. How do we hold both of those things at the same time?

Keith Casebonne (00:38:52):

Yeah. I mean, that's a really good question. So if we start with the casting, it's certainly... To not minimize things too much, the casting was important. It was meaningful that they did seek out actors who are blind and low vision because they're often left out of those roles. I mean, so often in Hollywood, the role of someone who is blind is played by a sighted person. So the fact that they cast someone, again, blind or low vision, I think is very, very important. But you can have strong casting, but it doesn't really solve the issues with the writing. The writing is the writing whether the actor is great or not. I think it's two separate things, and I think each thing should be reviewed on its own merit.

Jodi Beckstine (00:39:45):

Yeah, the series is based on a book, which I have not read the book, so I'm not-

Keith Casebonne (00:39:48):

And neither have I.

Jodi Beckstine (00:39:49):

... sure how the author cared for the character in the book. But there's always these conversations about how film and TV shows are based on a book and they deviate from it, right?

Keith Casebonne (00:40:04):

Sure, sure.

Jodi Beckstine (00:40:04):

So there was such an opportunity for them, the writers, to really dig deep into this character and really make her, and the other characters for that matter, big, deep, rounded characters. I don't know, I think they kind of fell short on that. I think trying to get such a big story into a miniseries was hard for them to do, and it was rushed, so the character development unfortunately suffered, in my opinion, on that.

Keith Casebonne (00:40:40):

Yeah. I mean, we learned that Marie-Laure is definitely a brave individual and has spent a lot of time growing up, unfortunately, in a... It wasn't always occupied by Germany, but throughout her life, the Germans have been advancing through France, and so you see how she became a resilient person, but there isn't a lot else we know about her actually, right?

Jodi Beckstine (00:41:12):

Yeah.

Keith Casebonne (00:41:13):

Yeah.

Jodi Beckstine (00:41:14):

Yeah, it's unfortunate.

Keith Casebonne (00:41:15):

Yeah. Well, so the series gives us some specific ways that Marie-Laure experiences the world. There's the model of Saint-Malo, there's radio, sound, touch, and her memory of things. What parts of that portrayal felt really grounded, and which parts felt a little more simplified or even just maybe symbolic?

Jodi Beckstine (00:41:37):

I love the model. I felt like that was a very grounded part for her. It was symbolic in a way, but it touched her memory. It told her something about the relationship with her father. It gave her a practical way to understand where she was. To me, it was rooted in access and preparation and trust in her abilities as opposed to the trope of helplessness. You know?

Keith Casebonne (00:42:12):

Mm-hmm, right.

Jodi Beckstine (00:42:14):

And I also liked the fact that she used a transistor radio, and that worked for me because it gave her a voice in the film. She was listening and communicating and sharing information and connecting to people beyond her home. It took where there was the lack of vision to the sound being amplified in the way that she dealt with the world and how she participated with it, and it influenced the story.

Keith Casebonne (00:42:52):

Yeah, yeah. Sound and also her memory became really important parts of how she moves through the world of the story.

(00:43:01):

I guess where it gets weaker is that sometimes the series leans really hard on the danger, the innocence that she has, the bravery of her and other characters in wartime essentially, but there was very little of ordinary life, like frustration, humor, anger, et cetera. And the relationships, of course, also there's several... Without getting deep into the plot and spoilers, there's a lot of relationships that get sort of formed in the miniseries, but they're kind of there and they kind of happen and there's not a ton of background or other, I don't know, depth to it. You know?

Jodi Beckstine (00:43:51):

Yeah, they're little islands upon themselves, and then we move past it in the plot, and then you're never really brought back to it.

Keith Casebonne (00:43:58):

Yeah.

Jodi Beckstine (00:44:00):

I also feel like the fact that she's blind was used to amplify some of the danger, and that kind of bothered me a little bit. The situation is dangerous upon itself. I think it was used to heighten the suspense for the audience. So then it felt more like a dramatic device than being authentic to her life, if that makes any sense.

Keith Casebonne (00:44:33):

Yeah. Yeah, no, it does. It does. Yeah, I agree. It can be a problem with making a film like this is that it's kind of hard to avoid that if it's going to have that aspect of fear and that element of suspense. If the individual was blind, it's going to play into that, I guess. And it's also sadly, I'd say, almost kind of a cliche.

Jodi Beckstine (00:45:07):

Yeah, yeah.

Keith Casebonne (00:45:08):

You know?

Jodi Beckstine (00:45:08):

I think so.

Keith Casebonne (00:45:10):

Yeah.

Jodi Beckstine (00:45:11):

So the series included audio description, and it's something that we're seeing more and more of. Netflix also released the audio description featurette. For listeners who may not know, audio description is spoken narration that describes key visual details between the dialogue so people who are blind or have low vision can follow the action, the setting, expressions, and other visual parts of the show or film. Why does access matter in a series like this, do you think?

Keith Casebonne (00:45:41):

Well, I mean, access always matters, period. But I like that, because the individual, the star is blind, it would be a real... I mean, it would've been a disaster if the types of accessibility features like audio description had not been used or had been ignored. I mean, thankfully, they did it, and that's good. I mean, the access is definitely... If you're going to represent the main character in the miniseries as being someone with a disability, then I think providing that access to people with the same disability has to be a given. And it's not always, obviously, most of the time it's not, but it's good to see when it is. It matters a lot, especially I think because the main character is blind and there's so much visual detail. So to have that audio description to really explain to that individual who's trying to experience the miniseries, what the radio room is like maybe, or the bombing... There's a jewel that's one of the key pieces of the plot. Just the vibrancy and shape of the jewel, you need to explain that with audio description, and it's great they did.

Jodi Beckstine (00:47:09):

Yeah. It seems obvious, but some of the people that are going to want to see this movie are the people that are going to be feeling represented in it, which are people who are blind and have low vision. So to not have a full experience for them would just be devastating. The representation that we're asking for on screen needs to also be for the audience who we're making this piece of art form.

(00:47:38):

The other part to it is one of the main plots is sound for her through the radio. Because it relies so much on sound, audio description feels connected into how the story is being told anyway, so it's kind of just a natural thing that should be there.

Keith Casebonne (00:47:59):

No, that's a great point. Yeah, no, absolutely, for sure.

(00:48:03):

Well, because the story is set in World War II, there's a larger disability history here that matters. Nazi ideology targeted people with disabilities through forced sterilization, institutionalization, and murder. When a story from this period includes a main character with a disability, what responsibility does it have to acknowledge that history, even if it's maybe not the main plot of the show?

Jodi Beckstine (00:48:30):

Yeah, there were a few moments where she's having conversations and she mentions that she's different, right, quote, unquote, "different"?

Keith Casebonne (00:48:39):

Yeah, mm-hmm.

Jodi Beckstine (00:48:40):

So we see that she understands how her blindness affects how the world responds to her, but I'm not sure that the audience is given enough context to understand what that means in the time period that she's living. This may be someone's first film where World War II is talked about-

Keith Casebonne (00:49:05):

Could be, yeah.

Jodi Beckstine (00:49:05):

... where Nazi policies are talked about. You don't really see the danger when you just say, "Well, I'm different." You think, in the context of the world you live in now, what being different means. So I really would've liked to have seen a little bit more of what the threat of occupations of soldiers and searching and bombing does within the Nazi policies for her and what real danger she and other people with disabilities were under. I think they fell short in that explanation.

Keith Casebonne (00:49:50):

Yeah, I think they did too. And there's several, I guess, I'd say, I'm not sure how many exactly, but there's certainly more than one, more than two or three times, that she encounters a Nazi officer or whatever, a Nazi soldier, I guess I should say. And they recognize, in those cases, in I think each of those instances, that she is blind, but nobody, not one of them is trying to take her or something because of it. I mean, they all sort of let it pass for whatever reason, and it's like... I don't know, I kind of wondered about that myself. Is that accurate? If they had encountered her actually, would they have been like, "No, no, you're coming with us"?

Jodi Beckstine (00:50:38):

Immediately, yeah.

Keith Casebonne (00:50:39):

Taking her away immediately, that never happened, and again, that's under multiple encounters. I mean, I get it from the plot, she had to be there, but is that accurate? So again, the viewer gets a sort of unclear idea of how disability was looked at because here they're just acknowledging it and moving... I mean, there is one character that refers to her as being sort of a flawed individual. I mean, there is some language that implies it, but in and of itself, it's not really enough to get that clear picture, like you're saying.

Jodi Beckstine (00:51:16):

Yeah. Yeah, and you don't want a big history lesson and stop the plot moving forward to do all that. But even a conversation between her and her father about-

Keith Casebonne (00:51:27):

It could have been a large.

Jodi Beckstine (00:51:28):

Yeah, yeah, what danger they're in. And again, the book could have totally gone into that, but they really fell short, I think, in the series for it.

Keith Casebonne (00:51:42):

Yeah, agreed. Agreed.

Jodi Beckstine (00:51:45):

So this brings us back to Meier and Disability Culture Lab's summer streetwear collection, We Are Still Here: Fashion Against Fascism, because that phrase carries a lot of meaning when we think about disability, survival, visibility, and the right to exist safely in community. So how does All the Light We Cannot See help us talk about disability and survival even when the representation itself feels a little bit more complicated?

Keith Casebonne (00:52:12):

Yeah, I mean, that's a great question, and again, a great, I think, tie-in as well. So Marie-Laure's radio broadcasts are a very clear example of disability and voice and resistance all intersecting. She uses that radio to reach beyond the walls of her house. She takes part in something larger than herself, and it's a way to get out there, reach out, communicate that is independent of her disability, but yet also it's a good fit for her disability. Because she has voice, she can use that voice through the radio, and it doesn't really matter in that instance whether she can see or not. So that intersection is a good... It works really well for her.

Jodi Beckstine (00:53:03):

Yeah. Yeah, I think the series lets us understand that people with disabilities have always been part of history and always been part of the resistance, even when history leaves those experiences out. I felt like she wasn't only trying to stay alive, she's making herself heard. She's taking part in what's going on around her, and that connects strongly to the idea of resistance being something that's active and not passive.

Keith Casebonne (00:53:42):

Yeah. Yeah, absolutely. This miniseries is certainly not perfect, but I think it does still help us look into that intersection and recognize it, ask better questions about it. I think that's an important aspect that they did do well.

Jodi Beckstine (00:54:04):

Yes, I agree. I agree.

Keith Casebonne (00:54:06):

Yeah. Well, the series gives us a lot to discuss, including the casting, access, character development, and the relationship between disability and history. So Jodi, what do you hope future stories about people with disabilities in historical settings maybe do differently?

Jodi Beckstine (00:54:24):

Well, I'm a big history buff, so most of the time I'm watching something that has to do with history. I hope they stop treating disability as if it means the same thing in every place and every time period because it's very different, even today with the laws that we have in this country versus laws that are in other countries. A character's disability and lived experience is unique to them and the world around them and the attitudes of the era.

(00:54:58):

I don't think this series helped people understand, like we were just saying, how dangerous that time period was for her. So I'd like to see them not pause for history lesson, but ground the audience into what's fully at stake. You kind of felt like what this soldier was looking for from her that he thought she had, without giving spoilers, that's one part of the danger that she was under. There was so much more that just really wasn't touched. So I'd really like them to really ground the character in the space that they're in and the time that they're in and what's going on around them. It's not just this series. I feel like a lot of series do that.

Keith Casebonne (00:55:50):

Agreed.

Jodi Beckstine (00:55:52):

I'm not throwing the whole thing on the shoulders of this one, but I think that we really need to pull that into focus.

Keith Casebonne (00:56:03):

Absolutely. I agree. There's things that the movie did well, and I think the connection to history, unfortunately, it didn't do all that well. And they could have gone further. The disability shouldn't be separate from the culture at the time because it's a piece of it, like everything else. I mean, the interaction of disability in... We talk about so many things. I mean, one thing maybe doesn't come up a lot, but there's the interaction between disability and our history and politics and things like that that are just as important and maybe wasn't fully there in the film.

Jodi Beckstine (00:56:43):

So when we talk about disability representation, what questions should audiences be asking beyond, and we've talked about this a lot, was a person cast with disability in this role? There's more questions that could be asked. What do you think those could be?

Keith Casebonne (00:57:02):

I mean, first of all, did the character have agency? Are they important? Do they represent their disability accurately and matter in a way that's unique to them and their disability in the story? Kind of like this did with first practical ways with the Model City, the use of radio, those were practical things that really did give us a good feel of her disability and how she interacts with the world. I like the Model City a lot. I think that was amazing, and I really think that's a good... One of the better plot points of the story was the fact that her dad had originally done it in one place and now again, when they're in Saint-Malo, did it again. He goes through and he builds that model, and I think that's just... It did show a lot of how much he really loves her and wants to see her succeed.

(00:58:07):

For some of the faults we've talked about, I do think there's elements that... That was one. I think it's actually really worked and was touching. But there's plenty more. I mean, did the story give the character better relationships out there besides just protection and danger? And that's one where we're not so sure about with this one. This one, I just mentioned the exception, but that's an exception. I think overall they didn't do as great a job. What are some others?

Jodi Beckstine (00:58:39):

Well, what you just said made me think about... We've talked about Bridgerton before, and there's a character in this last season that had a limb difference. She's in there working, and they could have left it very... She's a maid in this household. There we are. Here's our character. But they gave her a relationship with another person that she works with. We saw her develop as a character, and she wasn't just in the background. That's how you do it. She wasn't the main part of the story at all, but we were still getting these little nuggets of her life and her living this full life. It's just those little things that can easily be done.

(00:59:28):

Also, we talk about this too, them being involved in the writing process, being involved behind the camera, being involved in marketing for Netflix. They could have marketed this in such a way. I hadn't even heard about this till I was really digging trying to find topics for the deep dive-

Keith Casebonne (00:59:48):

Me too. Yeah.

Jodi Beckstine (00:59:50):

... so that's such a shame. It could have really been marketed well. I think people with disabilities or just the similar life experiences to characters need to be involved from beginning through the end. Hopefully, we'll see that changing more and more as we go.

Keith Casebonne (01:00:14):

Yes, indeed. I hope so.

Jodi Beckstine (01:00:14):

So for us, this Deep Cut is not just about whether All the Light We Cannot See worked as an adaptation. It's about what happens when disability is placed inside a story about war, fear, resistance, and survival.

Keith Casebonne (01:00:27):

And it's also about asking for more, more access, more depth, more complexity, more stories where people with disabilities are not just symbols of hope or hardship, but fully realized people with power, culture, and a future.

(01:00:44):

That's our episode for today. A huge thank you to Meier Galblum Haigh for joining us and sharing more about Disability Culture Lab. We are still here, and the power of fashion, art, and community in disability culture.

Jodi Beckstine (01:00:56):

This conversation reminds us that clothing can be more than style. It could be a message, a form of care, and a way for people with disabilities to claim pride, belonging, and visibility.

Keith Casebonne (01:01:05):

If this conversation stayed with you, we hope you'll share it with someone else. Thanks for listening, and we'll see you next time.

Jodi Beckstine (01:01:11):

Disability Deep Dive is a podcast that is brought to you by Disability Rights Florida, where real conversations about life, culture, and ideas meet the lived disability experience. Follow us on YouTube, Spotify, and wherever you get your podcasts. You can also find us at disabilityrightsflorida.org/podcast.