Rudy joins Maddie and Jess from Philly Socialists to discuss the politics of disability and its relationship with organizing. We discuss different models of disability and how they operate under capitalism, what disability can teach us about organizing methods, and the disability rights movements in the US. We the dive into how to relate to accessibility in our organizing, and how to handle conflicting needs around it. We end by discussing the liberatory horizons for disabled people under socialism.
Resources mentioned:
It takes Organizers to make a Revolution – Rodrigo Nunez
Crip Camp: A Disability Revolution
From Tide to Wave – Jean RD Allen & Teresa Kalisz
No, you can’t speak to the Manager – Mara Henao
Rudy (00:00:24):
Hello, welcome to another episode of Cosmonaut, the podcast of Cosmonaut magazine. Today, we have a discussion about the barriers in disability and organizing, and also more broadly about disability in capitalism and the disability under some socialist states. And for that, we have two people with me who I’ve known from the tenant’s movement in from the Marxist Center.
Maddie (00:00:47):
I am Maddie Rose. I go by, they and them pronouns. I am based in Philadelphia, and I have been part of Philly socialists for about five years and Philly Tenants Union for about that same length of time. I’ve also done work in that area around writing and reporting and some disability organizing. So yeah, really excited to be here.
Jess (00:01:13):
Cool. And I am Jess Levine. Pronouns are she and her. I’ve also organized with Philly Socialists and the Marxist Center, I’m currently serving as an arbiter, for Philly Socialists, which helps mediate conflict and grievance procedures and stuff like that. I’ve also been heavily involved in Jewish organizing through both a synagogue and some Jewish anti-fascist groups. And in those contexts, a lot of my comrades are disabled and I have chronic illness myself. So we’ve been involved in a lot of negotiating disability needs in those settings.
Maddie (00:01:45):
Yeah, I guess I can also share some personal relate–my own personal relationship to disability as well. I have some physical relationships with disability myself and grew up with a brother with Down Syndrome. So I have some connection to intellectual disability through him. So I think that’s kind of been kind of some of my background, but I’m sure it will be very apparent that we can only speak from our own experiences and not from anyone else’s–from other people with different types of disabilities’. Right.
Rudy (00:02:17):
That’s definitely something that sometimes, you know, it gets lumped as one big mass when there’s so many different particulars and how these particulars are very, very different from each other. So maybe to start off with one question, how do we challenge the idea? You know, that disabled people are mainly oppressed by social relationships rather than being oppressed by our bodies or our minds and how is this the case, especially under capitalism where what you value is essentially your capacity to produce labor?
Maddie (00:02:48):
Sure. Yeah, so I, I think, I think that kind of dives into the different models or ways of understanding different, disabilities. There’s a couple of different models through which people understand disability. One of them is kind of more like the physical or medical model, which I think is the one most people are probably most commonly aware of. It’s the one where it’s, you know, if you are born without legs and you use a wheelchair, that’s what makes you disabled, is those physical attributes or your relationship to, you know, medical experiences of disability. That is definitely a model that I will say some people really do view themselves and their own disabilities through, especially people with chronic illness, they will say, you know, what makes me disabled is the fact that I deal with these medical struggles, I’m someone who experiences pain regularly.
Maddie (00:03:46):
But I think, I think there are also a lot of other ways to view it that kind of challenge that perspective. Another one is the social model of disability, which would look at that same situation and say what disables a person is, not their body, it’s their relationship to the world around them. Social situations in which their access needs are not being met, and that are preventing them from being able to do their day-to-day tasks and exist in the world, living their social life and working the way that they need to. And so, you know, I think that if someone in that position were in a hypothetical world where everything was made out of ramps and there was no stairs and there were no things that were inaccessible to wheelchairs. That person would not really be disabled in the same way, because they would have a different relationship to the kinds of things that they are able to do physically in the world.
Maddie (00:04:49):
So I think that’s kind of another different model of understanding disability. That’s really important to think about as we’re unpacking this stuff is it’s not the onus, isn’t always on the individual who themselves is disabled. People are disabled by their surroundings. And I think one other model that we, as–I’ll speak, at least for myself, Marxists–should be paying attention to is economic models. And that’s the economic model of disability, which really defines disability by a person’s inability to participate in work at least under capitalist models and expectations of labor. So that one is really boils down to, it’s kind of the way that disabled people have really been defined by at least the U S government since its inception here, post the indigenous peoples who proceeded it. It’s always really been a matter of if somebody is–not whether or not somebody deals with certain medical problems or has certain birth differences or anything else like that–it comes down to how much are they able to engage in capitalist labor expectations.
Maddie (00:06:10):
And that’s really kind of how the government has always defined whether or not somebody is disabled. And that that’s something that changes throughout time. So as expectations of productivity increase and change, the number of people who would then be considered disabled under that expectation would also increase and change. You know, if we’re talking about something really like straightforward, like, production of items, doing that certain amount of production of items an hour is how we base like wage labor, right? Disabled people can’t really–disabled people can’t really engage in wage labor the same way that other people can because their productivity tends to just be different and the access needs that they would need in order to engage in those kinds of activities is different. And I think that another part of it is as demands increase, so too do increases in the number of people who would then be considered disabled because they’re not able to meet that. So I think that’s kind of some of the different models of thinking about, about disability and everybody thinks about them and perceives them really differently. And there’s no one correct model to understand it, but I think knowing that there are different models that exist help you to think about, what are the things that cause a person to be disabled?
Jess (00:07:50):
To jump in on that. I think one of the most important ways to view models of disability is as organizing strategies. Like each of these models is suggesting to us, if we view disability this way, how can we organize disabled people as a group to fight for access, to fight against oppression against disabled people? When we view it through the Marxist model, it suggests organization at the point of production, when we view it through the social model, it suggests organization like at the point of like social interaction, when we view it through the physical model, it suggests organization at the point of medical service. And we have to ask, which do we think is the most productive or even, which do we think is the most productive for an individual type of disability? Because like we said earlier, disability comprises a lot of different categories.
Jess (00:08:37):
And I think when we start asking strategic questions, instead of some of these philosophical questions, we actually are able to hold a more concrete conversation about what model of disability is going to be helpful to us. Not to get too philosophical immediately after I say that. But there is one thing I want to pull back to, especially with regard to the social model, but really all of them, which is to ask what is “able”? Like we talk about disability as the opposite of being able, but what is being able? And that question runs through these different models, because the physical model is–“you don’t have these specific set of like disabilities that we define. We define this set of disabilities, and if you don’t have them, you’re able.” When you do the Marxist model, it’s actually even simpler.
Jess (00:09:21):
You can’t participate in the process of production for some reason, relating to your body and mind that makes you disabled. The social model is perhaps the hardest and also most interesting to me, which is that it’s, you don’t have access to the same things in society that other people do. You can’t go to the same places. You can’t participate in the same events. You can’t live a certain lifestyle. And when you do that, you really expand the definition of what it means to be disabled. And I think it, it creates interesting opportunities for solidarity, but also a lot of struggles of like, wow, we have completely different relationships to this. But yeah, I think those are just like helpful frameworks for when we think about disability. Also pulling back to the Marxist model of disability, really, it was one of the first things to help me understand why capitalism was bad.
Jess (00:10:10):
Like in the sense of like when I was first radicalizing, I was looking for things that I could latch on to that were just like–there’s no justifying this. There’s no reforming this. This is built into the system. Why can this never work? And it’s like, wow. The argument under capitalism is the more you can produce–it’s meritocracy. You work your way up. If we take that seriously, disabled people just deserve worse lives. Like that’s an inherent–we can establish this minimum, and they deserve that maybe through like welfare, but after that, no, there’s just no value to disabled people having better lives. And I was like, there’s no solving that under capitalism. There’s no solving that under wage labor, disabled people will just inherently have their lives be less valuable than those who can produce a certain amount. And I was like, wow, okay, you can’t reform that. We need something completely different. And so I think it was a very clarifying moment for me to understand that.
Maddie (00:11:03):
Yeah, absolutely. I think one of the things that you were speaking to that was important that I think we should establish is that disability is really a spectrum. There’s no abled or disabled people as like two complete different entities all the time. You know, people who needed glasses would have at one point been considered disabled and are not really considered disabled anymore due to having the technology they need, but also just people’s ability to engage in production completely varies based on the person and not everyone who struggles with capitalist means of production is someone who necessarily self identifies as disabled. That’s just a huge spectrum of different things. And so, I think one way in which you just were talking about why that’s really essential is because that’s something that a lot of us have in common, including people who have more noticeable disabilities, or are more impacted by their disabilities and people who really just don’t necessarily consider themselves like disabled in that way, but are still physically unable to do things like stand for eight hours or something like that.
Maddie (00:12:18):
And so that leaves spaces for organizing that aren’t even necessarily like–wouldn’t really make sense as much under the medical model. And I also was relating to what you were saying about that being a reason why you can kind of point to capitalism and say, this is kind of inherently really broken. And I think one way that that was really apparent for me growing up was that disabled people can labor. They absolutely can labor. They can’t always labor under the current capitalist system that we have set up right now. My brother can labor, I’ve seen him do it. He’s really, really great at a lot of things. He’s great at greeting people. He has awesome social skills, so he’s good at those things. He’s great at cleaning up and he likes doing those kinds of repetitive tasks, but the times we tried to put him even in a part-time job, he just wasn’t able to accomplish enough things without a certain amount of assistance, you know, as much as is needed in an hour for him to be a productive capitalist laborer. And so I think that’s, I think we kind of have to really be thinking about how are we defining labor in this circumstance because disabled people have always labored and will always continue to labor. And I think being able to respect the kinds of labor that disabled people can do as like valuable and important really matters.
Jess (00:13:47):
We’re going into a lot of directions, but I really want to follow that train. Cause I like it because it gets to something we might speak to more later, which is–what is dreaming disability freedom under communism look like. And one of the basic parts of a communist vision is like free association. Like you get to do the labor that you find personally satisfying instead of the labor that you are like forced into. And that actually opens opportunities for disabled people to labor in a way that they find satisfying. Like you’re talking about with your brother, like, it’s not that he couldn’t do things it’s that he couldn’t do the things that were wanted of him. And if he had the opportunity to do the work that he found fulfilling, it didn’t have to like be, be set by these expectations. That’s actually a thing that allows his life to be more fulfilling because it is a thing he personally wants access and opportunity to do.
Jess (00:14:34):
It’s a universal benefit under our theoretical communism. Something else I want to pull back to is you talking about like, there’s no, just disabled and able those aren’t like these discrete categories. And one, yeah, it’s not a philosophical thing. It’s not you’re disabled or not disabled based on these pre-existing categories. It’s an organizational model, right? It’s an opportunity for strategy. And another model that we didn’t talk about that I find fascinating, that I encountered recently is the notion of pre disability. So I know that there are some people who only refer to people as disabled or “before they are disabled”, because as age hits all of us, our capacity to labor, or to participate in society in the same ways will inevitably break down. And even with like temporary illness and other forms, you’ll lose ability in a way.
Jess (00:15:24):
And so, you are never someone who is always going to be able, you’re always going to be someone who is disabled. And the question is, are you going to fight for that person now? Or are you going to wait until it is your problem? And I think that is another really interesting model that like doesn’t always work and also has some really important implications when we use it. And speaking of the implication of all of these models, like what’s sort of the benefit? And I think speaking of disability as an opportunity for coalition is really important. So it is both the opportunity for like individual types of disability. Like obviously as a person with certain chronic illnesses, I share interests with other people with that same chronic illness. And that’s really obvious how we would organize even under the physical model.
Jess (00:16:09):
But when we talk about broader models, what it is an opportunity to do is connect and say, all of these different types of disabilities are experiencing similar problems and we can create broader coalitions if we group them under disability organizing. And that’s the task of communists too. Like that’s the task of the cadre. The party! Is to connect disparate struggles into one larger struggle, versus all of these like isolated worker ones. So disability like organizing actually lends itself to that. And some very clear ways is it’s a way to connect up all of these struggles and then look to the history of disability activism for like, how do we wage struggles through a lens of disability.
Rudy (00:16:47):
So maybe to jump in here and elaborate a bit, like there were like huge disabled activist movements in the US in the seventies and eighties, and even across the globe, you know, there’s very little history of that. The US has the Americans with Disabilities Act, which I probably, I don’t know enough to say, but it’s probably flawed in many ways, but that’s way more than what I’ve seen in any Western European country. So do you think you can go into this, what kind of history that was and why do you think there is so little said today about this and in a sense also the disability protection in the U S has tended to be much more geared towards what happens after you get to disability, rather than preventative care. I know for me, something that really spoke to me was, you know, when we were in the presidential debates and Marianne Williamson said, we have a culture of, you know, death care and not healthcare in ways that we’re always trying to prevent a symptom rather than going out to causes. And my interest is in food production and how the US is so obese. But I guess it works many, many areas. There’s a lot of ideas we can pull threads from.
Maddie (00:17:57):
Yeah, absolutely. So I definitely think one of your questions has a very easy answer. The question of like, why don’t we know more about that history? I think, it’s the same reason that we learn about Martin Luther King Jr, but not Malcolm X in school. Right. There’s a lot of history that people do not want us to know. And yeah, there’s a lot of really, really interesting disability organizing that has happened in the United States over the span of really several centuries. One thing that I think has stands out to me as being really important was that for probably about a hundred years, that history of disability organizing was mostly very individually grouped. It was, people with physical disabilities–like specifically vets organizing, it was people who were blind or deaf (a lot of people also who are deaf consider themselves to not be disabled. They consider themselves to be something like their own culture. For I think the same reasons as really the social model exists.).
Maddie (00:19:09):
But so that was the case for a long period of time, you had all of these kinds of independent movements that were winning some gains, but not making like really massive strides. I think the seventies and the eighties were a really interesting time because that was the time in which everybody was framing things within this lens of civil rights. And I think disabled people really saw themselves in that and identified with that framework and were like, well, if we’re pushing for all of these other civil rights things, where is our civil rights. In a way it’s kind of complicated because in a lot of places, disabled people weren’t specifically banned from like, as a blanket ban, but they also weren’t accommodated in any way either.
Maddie (00:19:53):
Their ability to even enter government public offices, be able to ride public transportation, be able to go to public schools. Those were all things that were seen, I think, by activists of that time as something that were their civil rights. And so one thing that really shifted over time that made them a lot stronger was, uniting across differences. So the combination of blind, deaf, physically disabled, and intellectually disabled, and mentally ill folks, coming together and pushing for themselves under one umbrella has been as Jess has spoken to, an effective organizing tool. It was a useful framework for that time because they were able to frame it as a civil rights issue. And so they were able to really make progress coming together across differences. Also for a long time, the history of disabled organizing was a lot was segregated.
Maddie (00:21:01):
There were often not integrated groups that were making their own individual attempts at strides, and that was leaving out a whole lot of folks. So those were, those were some big differences that were made. But I think also another thing that was really important during that time period was, the connections that a lot of folks had. There was a lot of really cool organizing that came out of labor unions that sat down and set up organizing training specifically for disabled people. The 1977 sit in actually at the Health, Education and Welfare offices, which was an opposition to the lack of enforcement of anti-discrimination legislation, stemmed out of a group that received a whole bunch of organizing training from people connected to the labor movement. They had a whole ton of union support.
Maddie (00:22:07):
And what ended up happening is they went to go confront the Secretary, right. They were getting a whole bunch of non-answers. Then they were like, all right, well, we’re going to move to just stay here. And then were like, okay, well, we’re going to just stay here overnight because we’re still not getting the answers they need. And they ended up holding a sit-in for about four weeks. And I should say, that’s always the way that people tell this story, but those things are never, that they’re never that spontaneous, they’re never as spontaneous as I feel like the stories we tell, like people, people tell the stories as being spontaneous, but then other people are like, well, this leader told me to bring a toothbrush when we showed up to the meeting. So it’s kind of like, you know, I think that’s sometimes how it is, is, you know, you do have people who have these ideas planned.
Maddie (00:22:54):
But that was a really, really effective sit-in and eventually won enforcement of that anti-discrimination legislation, partially because of the amount of support they had–they had training from, labor unions, they had support and donations and food from a whole bunch of labor unions. They were getting one hot meal from the Black Panthers every single day. They were getting donations of mattresses. They were getting, nurses coming through and providing medical care. I mean, picture this in your head right now, right? Because you’re talking about people, who many of them are in wheelchairs. Many of them have a lot of medical needs. Many of them required certain kinds of medical care every day, but are doing a sit in for four weeks. So yeah, having those kinds of supports and like coalitions kind of built, I think, was really helpful as well as having that kind of organizing training built. And there was, yeah, there were a lot of really radical groups that were able to kind of emerge, um, around coming together across differences of disability and advocating for things under kind of a civil rights lens. And were able to really take radical action at that time to win a lot of demands.
Jess (00:24:10):
I want to just like draw some connections to some of the awesome stuff that you’ve said. So like what you were saying about how it’s like, it’s not spontaneous, right? Like it’s told as a spontaneous story, but it isn’t. There was an article in Viewpoint a few years ago, called, “It Takes Organizers to Make a Revolution” by Rodrigo Nunes, which recently got republished in Marxist Center, actually, a collection by a Marxist Center member, Jean Allen, and Teressa Kalisz called, “From Tide to Wave.” And what it talks about is even these like protests we’ve been seeing the last few years, they look spontaneous, right. And there’s a lot of like spontaneity worship of like, wow, it’s great that it’s just the people rising up. But like, these are people in groups that are local groups that aren’t necessarily what are being presented at these like protests or whatever.
Jess (00:24:55):
But like someone brought these communities together to go out and take to the streets. That organization already exists. In fact, this doesn’t happen without some form of organization. And so what you’re talking about is another example of that, which is just an underappreciated thing on the left overall. And I encourage people to check out “From Tide to Wave” or “It Takes Organizers to Make a Revolution” cause these really breakdown how that works and why we’re missing that. And then I wanted to talk about ADAPT. You mentioned like transit, organizing being a big thing. That was actually how ADAPT, which was one of the most sort of famous grassroots disability organizing groups, was first started to organize for bus transportation because disabled people just didn’t have a way to get anywhere. So just recognizing like why that was so important and what that contributed to another element of this is actually AIDS and the AIDS epidemic, and how that created like a new layer of disability among the queer community, like Act Up was to some degree also a disability rights organization and AIDS advocacy organization, but it’s also a disability rights organization.
Jess (00:26:00):
And that taking place in the eighties is another thing that contributed to the creation of more disability organizing. History isn’t my specialty, but these are some things I just wanted to flesh out. As far as why we have seen some radical disability organizing not flourish as much as it has in maybe the, say the seventies or eighties, like to some degree, we just have to say like, well, why did it happen overall? Like why did it happen in every social movement, where’s the new communist movement, what happened? And I think the advent of neo-liberalism and the defeat of that movement overall is a central part of that story, but there are some more disability specific reasons. In particular, the thing about some forms of legislation that provide for people’s needs is it can also diffuse activism. Like the ADA was unquestionably a stride forward for disabled people in this country, and it also means some people demobilized because more of their needs were met.
Jess (00:26:55):
And how we hold through–the another thing “From Tide to Wave” talks about actually is how we hold through these lulls, how we like keep up the organizing when the popular will retreats is actually one of the main things that communism and the historic party of communism has to do, like the communist program is to keep pushing these and to keep that knowledge and organization held even when the popular will recedes, so that when it comes onto the stage, again, we are ready to push and we are holding all of those historic lessons, which is part of why I’m glad we’re doing this. I think both the ADA is an example of that sort of diffusing. And so our nonprofit disability activism organizations, which are like significantly larger than they would have been 40 or 50 years ago, like nonprofit activism has swallowed a lot of left activism here, but disability is a great example of that, where all of these, like nonprofits that specialize in certain forms of disability and especially cater to middle-class disabled people, became a more popular avenue for disabled organizing and like split the movement based on class lines.
Jess (00:27:59):
The final thing I want to offer is that I don’t think that would be right for obesity to come up without mentioning the role that fatphobia plays in furthering disabled oppression.’s I have disabled friends who are fat and who will go to a doctor and they like, they’ve went waiting on this doctor for a year, two years and, and they have like things directly related to that doctor’s specialty. And they’ll go in and the doctor will say, lose 30 pounds and come back. Like, that’s all they will get from this factor and obesity and the obesity epidemic or whatever is partially used as a way of–the government actually like releases its responsibility for disability care. It says that like, actually it’s an individual choice by all of these people, to become fat and therefore, we don’t have to provide care for them. We just have to change that. And we don’t have to restructure society such that, we don’t place these ridiculous expectations on disabled people. We just have to make them not fat. And that fatphobia is an essential part of disabled opression.
Maddie (00:29:03):
Yeah. I really appreciate you bringing that up a lot. Cause I feel like that’s one hurdle that a lot of people need to face, which is not even being, not even being believed in their own disabled experiences in the first place in that is, is a huge obstacle that we still need to be working to combat. And it’s definitely tied to a lot of the ways in which, you know, healthcare is, is a big central figure that we need to be tackling in our disability activism. One thing that I think I wanted to pitch also was, the Netflix show Crip Camp talks a little bit about the sit-in I mentioned, and also kind of goes into the relationships that, that built on. I mean, that was building on relationships, not only that were building from these radical organizations for like decades, but also was building on relationships made by just individual disabled people that they had met at this summer camp.
Maddie (00:30:00):
And through all of those social circles that really evolved. I think we know from history that what gets people to be willing to take radical action is the strength of those relationships. And that’s something really crucial that I think can sometimes be missing and can be sometimes the missing step in reviving some of that radical action. That’s to say there’s definitely radical disability groups that do currently exist. I only have ever been to like one ADAPT meeting, but the whole time I was there, people like came up to me and were super friendly and then like bragging about the times they’ve gotten arrested at the Capitol. And I was like, oh, this is dope. These people are so cool. Like, I don’t know. I just had a very good impression from them.
Maddie (00:30:48):
They’re still out there doing stuff a hundred percent. But, but I do think we need more of that. I think that as you were speaking to Jess, there’s been overall a lot of, kind of a move from activism to nonprofit industrial complex kind of approaches. There’s been a move from activism, I think in my personal opinion to a focus on advocacy and representation and other sorts of things that while very important in their own right, aren’t always concretely focused on people’s most immediate needs. I think that sometimes that’s a thing that happens when folks are not uniting across differences. I think that’s something that can happen when you’ll get, for example, like white middle class, disabled people in a room together who are not necessarily seeing the different experiences that, people who are disabled, who are Black and, and in poverty are dealing with. And I think continuing to build those relationships across differences is, is really how we’re going to be able to kind of build up some of that, that disability activism that I think I would very much like to see more.
Jess (00:32:07):
Yeah. ADAPT is still super active. They were super a big part of when there were like attempted cuts to Medicaid and the past few years doing those like big, like sit-ins or die-ins at the Capitol, like laying like folks in wheelchairs, just like laying down in congressional offices and refusing to leave. And they were like stunning images. And yeah, just like doing incredible work. I also wanted to mention, like when we talk about socialist or communist strategy and disabled organizing, David Harvey on his podcast about neo-liberalism talks about the three, like sections of socialists struggle. So you have point of production struggle, point of reproduction or social reproduction, struggle, and point of realization struggle. So point of production is the traditional one that everyone thinks about. Like it’s where you labor. Point of social reproduction is like how the working class recreates itself so that it can create more labor for capital.
Jess (00:33:00):
And a lot of feminist struggle focuses on reproduction. The point of realization is like where value is created for capital. Like someone has to buy the thing to give it value. And so point of realization struggle is like–the typical example of the consumer boycott. The boycott has become a nonsense term under late capitalism. It’s a thing that’s been recuperated by capital in many ways. But actually point of realization struggle is a really important form and like place that disability organizing can happen, like to say that in how we consume healthcare and in how we consume elderly care and how we consume all of these other things. Like where can we unite people who are like actually forced to consume certain things like wheelchairs, you have to be able to get those.
Jess (00:33:51):
And so these people form like a natural consumer block, that like you can do more than just a like disorganized voluntary boycott sort of thing. When you have groups of disabled people who are reliant on certain services, they also have a particular power to affect that industry and how it receives value. And if we’re looking for communist opportunities and communist horizons in disabled organizing, we should be actually like doing investigation and analyzing like, where are these points–where are these opportunities in the point of realization to organize disabled people and how can we make ourselves useful in those struggles?
Maddie (00:34:28):
I absolutely love that. And I, and I think it speaks to a bigger question too, that doesn’t have concrete answers, but, you know, when is it more valuable to organize as disabled people versus alongside disabled people? And I definitely think there are areas where, it makes sense to do disability-identity-specific kinds of organizing around the concrete things that people need and the concrete kinds of advances they need. I also think that there are times where that isn’t always the number one, like only way to be, making strides for disabled people. One thing that I’m thinking about in particular that I’ve encountered in my work is, the limits of things like anti-discrimination legislation and stuff like that. A lot of the time people will really push for those kinds of things.
Maddie (00:35:27):
And they are important wins to be had for disabled people. But so I worked in tenant organizing, right. And one thing we did not have for a while was any kind of protections against eviction–basically the law on the books was, landlords can evict you at the end of your lease for pretty much any reason. And eventually we were able to work and get that changed with some Good Cause legislation that required there to be specific reasons, at least like non-payment of rent or something like that. But in instances like that, where everybody doesn’t have protections, it doesn’t really help all that much to pass and fight for and advocate for the enforcement of specific anti-discrimination legislation, because it doesn’t matter if the landlord is evicting me because I’ve asked for too many accessibility improvements, if he can evict me for any reason, he can just say, he’s evicting me for no reason.
Maddie (00:36:30):
And that is a perfectly fine solution. And then we all move on with our lives. And so I think it’s important to pay attention to, while I would say that obviously as Jess pointed out, advocating for things like anti-discrimination legislation is not the only kinds of methods that you can take when organizing as socialists. There are really like limits to things like that that are identity specific. And there are sometimes areas where those things are better addressed as universal wins for things that we all need. I mean, we all, every single person, regardless of how healthy they are, needs a better healthcare situation than we currently have. Right. That is just fundamentally true for every single person in this country. Our healthcare is shit. So yeah, I think that, yeah, it’s just really important to focus on in each kind of situation–what am I trying to accomplish and what is the right strategy to get there? And then who am I building alliances with in order to get there. Rather than focusing really hard on the identity, like who’s disabled and who’s not, which is the right way for us to be, you know, doing this kind of thing.
Jess (00:37:47):
And again, that is the task of communists, right? What you’re talking about there with like uniting to universal demands, like in any like form of struggle, not just disability, the task of a communist is to say your individual trade union struggle, for example, is actually part of this broader struggle against capitalism as a whole. And we can like provide you a way to escalate that struggle and connect that struggle and engage in shared education and learning together that allows us to address those larger problems. And so again, it makes sense in the disability sphere to be part of connecting disabled struggles, to larger struggles when you’ve reached those limits of disabled activism, when you recognize that no amount of anti-discrimination legislation is going to protect a tenant, if there aren’t tenant protections or in fact, and no amount of tenant protections is going to protect tenants as long as there is privatized housing, but that’s like the next step. So like making those connections and doing that sort of like, awareness work as part of actual organizing work, as part of being part of disabled struggle is the task of communist cadre.
Rudy (00:38:53):
Right, this goes back into, you know, the idea of the party should be the tribune of the oppressed and not just tied to economist demands. So going maybe a bit, like we’ve talked a lot about the politics aspect I wanted to touch also on the organizational aspects. And, you know, we talk a lot about, how do we make our organizing more accessible? There’s, you know, like language justice is a big conversation I want to have later on this podcast, would things like subtitles during virtual meetings, or giving something, like you said, get people to do what they can do and what they’re happy about doing. So what have your experiences been with disability and organizing how do these two things come together, or, yeah. What can you tell me and our listeners about this?
Maddie (00:39:38):
[Laughing] Sure. I can start off with this complicated question that has no good answers. Accessibility is complicated. Accessibility is complicated because there are a lot of the time regularly conflicting needs. And that is just a really complicated part of being a person who lives in an already ableist inaccessible society. And so I think that’s a complicated aspect. I really came in to my organization when I first joined having very, very high demands of accessibility accommodations and then realizing that there were things that were outside of really their control, a lot of ways, like the fact that there are just very few like physically accessible buildings in Philadelphia, there’s just not a lot of them. And so I think, yeah, I’ve kind of had to start getting more creative and dreaming bigger about what that would look like.
Maddie (00:40:44):
I’m thinking a lot about this article that Mara [Henao] wrote. Who’s also a Philly Socialists member that was about, like, “can I speak to your manager” mentality? And I think I really came in with that. I came in with who’s in charge of this and why aren’t they doing everything perfectly enough? And instead it’s really more of an issue of when you’re in an organization, you have to kind of figure out how we can all collectively carry the mental and emotional responsibility of figuring out what needs exist in the organization and how we’re going to accommodate those, because there’s no perfect script of if all you do is get some zoom captions and, make sure that you’re in an ADA accessible building, then you will have done accessibility. It’s just never the case.
Maddie (00:41:37):
Accessibility also means a lot of things that side of just disability, right? One of the things that I immediately wanted to do was, well, let’s just move everything into wheelchair accessible spaces. I don’t care if there’s only like two of them, we’re going to do it. And then I was like, oh, well this creates other issues. The only spaces that were the case were expensive and gentrified, and so they were not close to public transportation, which is not accessible for a lot of people. They were expensive, like to get drinks at or whatever, which is not accessible for a lot of people. There was no space for kids to hang out, which is not accessible for people with kids. There’s just like, language accessibility, like there’s like a whole host of things that accessibility encompasses. And I think that’s where it gets really complicated is you’re never really going to be able to like, have a checklist where you can just tick everything off to do correctly. I think instead there just needs to be a lot of people working together to be constantly thinking about how can we make this the most accommodating we can be. And maybe sometimes that looks like alternating meeting spaces or alternating between, zoom events and in person events, depending on what people can do, things like that. I think those end up all really being important.
Jess (00:43:00):
I love that you brought up Mara’s article, on, I think it was like customer service mindset and socialism. I think it was on organizing dot work. That was one of the–I was going to bring that up if you didn’t. Because like, it really gets to the idea that like socialism is participatory. Like fundamentally one of the things we’re trying to change is that, it’s not someone else’s in charge of doing these things anymore. You don’t just have a representative and they do all the things for you. It’s like a collective struggle to do this. And you can’t place the, the, onus just on disabled people. And you also can’t–any individual disabled person is also not not responsible for it. And maintaining this is going to come up again and again, as we talk about what access looks like is like, it is a balance of these things.
Jess (00:43:45):
It is both. It is both that an individual disabled person is responsible for helping organize this. And if they’re the only ones that are taking on that responsibility, something is wrong. Cause you’re in your organization and you can’t look at it through like some sort of like one or the other lens, or you’re not going to be able to do this effectively. You can’t approach our small scrappy little orgs, like you would a billion dollar company. Like they’re always going to have more resources. And it is always right to approach those companies from an oppositional standpoint and be like, why aren’t you giving us what we need? Cause they could, they could in a heartbeat plus we want them to die. We don’t want them to function. Like we want to overload them until they fall apart. And so it like makes total sense to phrase and, and pursue our demands on these organizations in that way. Socialist organizations are tiny and they’re trying to do a million things on no budget and that matters.
Jess (00:44:36):
And like what we have to approach them like instead is how can I show you why it is important that you need to meet these needs? How can I participate in the process of figuring out how we can best meet these needs? Like those are vital steps of learning to create access at socialist organizations, and leadership of these organizations is responsible for responding to these demands in a good way, but it is both parties are responsible for their behavior in this. And often that does look like prioritization. You have to investigate and then choose what to prioritize. Like we can Mao here, like no investigation, no right to speak. Right. Because it’s not zero sum. It’s not like you get one or the other there’s like curb cut effect is a really common term. Like everyone benefits when there’s curb cuts.
Jess (00:45:25):
But it’s also not, not zero-sum like you don’t actually get to do it all. Like you can’t hire ASL, interpreters and captions and this and that, and be in an ADA accessible space and everything for every meeting. Like we literally can’t afford that. And we would stop being able to pursue justice for disabled people in the process of trying to make everything we do perfectly accessible to every category of disabled people, which as we discussed earlier is infinite and variable. And so the investigation you have to do is–who in this organization is disabled? And also who in this org, what disabled people are missing from this organization? What are we doing that isn’t, that is making it so that some disabled people don’t even ever show up, are both questions that you need to be actively investigating. And then once you’ve done that, you say, these are our political priorities, and this is how providing those types of access allow us to better meet those priorities.
Jess (00:46:24):
You have to actually be willing to define goals and then say, this does or doesn’t meet those goals. Sometimes you need ASL interpretation more than you need an ADA accessible space. Sometimes you need an ADA accessible space more than you need ASL interpretation. It depends on who you’re trying to get there. And it depends on like how many people that’s going to affect. And it depends on who is not in the room. Like all of those are questions that you have to be asking. And, like Maddie brought up, like sometimes there are–conflicting access needs is a common term for this, like two different disabled people need completely opposite things. Like people who have like sensory overstimulation need less like bright lighting and people who have vision impairment need bright lighting and can’t have dark. You can’t do both. And so it’s not a question of like providing every form of access.
Jess (00:47:15):
It’s saying, what form of access do we need right now? And if you can’t do both, you go again to what Maddie said, what I was meaning to connect is like alternation is sometimes an necessity. I know in an organizing space that actually Maddie and I were both in, like, there were needs around like food and eating disorders and chronic illness that relates to digestion. And it was like at some of these, you can have food whenever, wherever at some of these, actually it’s going to be limited to certain spaces because we can’t do both at everything. And it’s emotionally fraught to do that. It’s emotionally fraught to tell someone, I’m sorry, we, we can’t meet all of your needs all of the time. But it is actually the, the task of communist cadre to both be able to deliver that and to be able to take that, like if you’re going to be a communist organizer, like there are all sorts of other sacrifices you take on and what are the ones you have to be able to take on is to say like sometimes my needs aren’t going to get met.
Jess (00:48:08):
And I understand that as long as they are genuinely trying to balance those things, that is a part of the struggle. And if we were to achieve communism, one of the things we’re going to do is make it so that accessibility is more available everywhere to make it so that we are resourced in the way that we are always able to access these things. But like Maddie said, we’re living in a capitalist society and it’s very, very hard to provide all of those things right now. The basic summary is you have to be working on it and you have to be investigating and you have to be willing to prioritize, but you also have to be understanding, when you have those access needs of like, what is possible. You have to be like really like honest about those questions and pursuing them.
Maddie (00:48:51):
Yeah. I love you kind of reframing that because I feel like one thing that was really a struggle for me was investing in an organization that I felt didn’t immediately reflect all of the dreams and goals that I have around accessibility, but there are, you know, material, world reasons for why that isn’t a hundred percent always the case. And the thing that oppresses me the most as a disabled person is capitalism. And so I’m going to figure out how to navigate those complexities until we can get, if I’m working towards getting there. Something that I don’t think Mao said, but I’m going to say, is don’t let the perfect by the enemy of the good, I think sometimes organizations will feel overwhelmed by accessibility things, and they’re just like, we’re too small and don’t have enough money. And we’re just like, not necessarily prepared to do that yet.
Maddie (00:49:41):
And you know, I think that can’t be an okay answer either. I think a lot of it is being willing to take risks and solicit support from the public is a thing I’ve seen happen. I’ve, you know, I think the Wooden Shoe recently like worked on–which is a radical anarchist bookstore in our area–just worked changing up it bathrooms to be more accessible. And they just kind of like put out a reach into the community and were like, we’re doing this, who’s going to help make it happen. And I think sometimes that’s the attitude you have to take is be willing to take risks and just say, it’s gonna cost this much money and it’s happening next week, you know, organizing to make, to make those things happen and, and reaching beyond what your, what your limitations are as far as funds, and being willing to solicit increased funds from within your own organization’s members.
Maddie (00:50:33):
Those things are really difficult, but they are, they can be possible. I know one thing we’ve struggled with for a while is this issue of ASL interpretation and yeah, I think in an ideal world, I would love us to always have ASL interpreters at every single thing that we do. And I don’t think that we’re financially there yet, but right now we’re not letting the perfect be the enemy of the good. And we’re just saying, okay, anytime somebody wants to be an event who’s going to need an interpreter, tell us, and we’ll get that interpreter. And that’s the best we can do right now. And that is better than simply ignoring it and turning them away. But I think honestly, I think a lot of this boils down to like, being good at organizing basics is what’s going to really help you meet a lot of accessibility needs.
Maddie (00:51:17):
It’s exactly what Jess was saying, like doing an investigation into what are the needs that people have and that’s stuff that happens in one-on-ones when you’re working on building relationships and building leadership saying, you know, what are the things that are preventing you from being able to get more involved in this organization,. Maybe it’s, you know, concerns or worries about the kind of action that they’re taking part in, or maybe their actual like access needs that are making it hard for them. Maybe being able to set up a carpool is something that would help them be able to be more involved. Those kinds of those are things that good organizers should be doing, good organizers should be figuring out how to make sure everyone has a plan to get to the meeting, how to make sure that everyone is being communicated with through the means that is most accessible to them.
Maddie (00:52:08):
Some people are better reached through emails. Some people can only do phone calls. There’s all sorts of different variations. And if you’re a good organizer, you need to be able to say, we’re sending out an email, we’re putting a Facebook post and we’re doing a whole phone banking, and that’s how we’re going to get people out to this thing. And that’s accessibility, right? Is being able to really reach people in all of these varieties of ways. And to be able to figure out what people’s needs are and what people’s needs are that aren’t getting met so that they can be more involved and that they can build a bigger organization stronger. I mean, disabled people are predominantly poor, like they are the working class and there’s also, you know, one in four people is considered to have a disability. I know we talked about disability as a spectrum, but if you want to use some government numbers that’s some government members, and so this is, these are things that you always have to be actively working on and paying attention to in order to be able to build your organization stronger. And that’s, that’s what we’re trying to accomplish here. So yeah, I think there, there are all sorts of reasons why those things are really critical.
Jess (00:53:19):
When you were talking about like, um, coming in and looking for the perfect organization that immediately met all of your needs and like learning that you can’t do that. It’s, again, I’m gonna relate it to a broader problem on the left of like the whole, like splitting for purity phenomenon. Like this party doesn’t have my exact line and isn’t pursuing politics in the exact way that I want to, and therefore I’m going to form my own split off and it’s going to be this 15 person party with a Facebook page or whatever. Like it’s the same phenomenon it’s saying that, unless this party everything that I want, or unless this organization does everything that I want, it’s not worth organizing with. And like, no, we’re going to get nowhere with that attitude. It is about like finding an organization that you think is committed enough and listening enough to be able to push internally to make it do what it needs to be doing.
Jess (00:54:05):
And to sometimes also just have the humility to accept that it’s not always about you. And that will make us stronger as organizers, whether that is disability or just anything in general. I also think when you talk about like it being a basic organizing skill to like be investigating and figuring out what the needs are, it connects to another larger problem on the left of like the left is bad at reflection. Like it’s actually hard-core tasks and something that the contemporary left is especially bad at like so much of like theoretical work or intellectual work or whatever you wanted to call it would be better if it was done in terms of, here’s a thing we actually did and tried, and here’s what didn’t work, and here’s what did. Here’s the questions that we’re asking right now to figure out where to go next?
Jess (00:54:47):
Like if they were in terms of specific things that we are working on, we are then able to actually pull real data and information from them. And that’s something that is way less common, in the contemporary left than it should be. It would be interesting to ask why, but I’m not gonna go there for too long. Actually I’ll say one thing about that, which is that like, it’s easy to be like, no, we have to be doing the work. There’s so much work to be done. We have to be doing it, we have to be out there and like doing it all the time and we can’t stop and like ask these questions. And actually it’s just as bad to spin your wheels really, really fast, as it is to stop and ask, like, are we stuck in a rut? And so with disability organizing like other things we need to get better at reflection. I’m going to plug “Tide to Wave” again, I know that I sound like I’m really on the same thing, but it’s very much talking about that as well.
Jess (00:55:36):
And that’s why it’s so on my mind is the idea that like, actually we have to be reflecting and improving our ability to do these processes, if we’re going to get anywhere. Finally, something that I wanted to bring up based on something you said, and, and earlier discussions about the Marxist model of disability is that, there are rich disabled people, like those people exist and it’s not usually through their own labor. It might be from labor prior to disability, or it might be from family, or something like that. But the lives of rich disabled people are very different than the lives of working class, or even middle-class disabled people. Like when we talk about the Marxist model of disability and even the social model.
Jess (00:56:16):
When you are bourgeoise rich disabled people, you have access to this sort of like, not just like care, but really like hand and foot care that you wouldn’t otherwise, when you have someone like bringing you your every need, when you have a private driver, when you have all of these other things, you have a form of access that other disabled people don’t, and it’s not to say that you don’t experience any form of oppression or disability, but it is not the same thing to be disabled. It does not mean the same thing when you have all of these forms of access care that other people do not. And that’s one of the reasons that we have to be class conscious and our disability activism, or we are eventually gonna like not, not be where we need to be and our model and strategy is eventually going to fail.
Maddie (00:57:02):
Yeah, I really appreciate you bringing that up. That’s absolutely the case. I think one thing that’s also important to bring up, also is, I mean, the role that race plays in this–I feel like one thing that a lot of people don’t know is that white, disabled people were deinstitutionalized primarily in the last couple of decades. Black, disabled people, and especially like poor disabled people have never been deinstitutionalized. The method of institutionalizing them simply shifted from asylums to prisons. You know, half of people in prisons have a mental illness, that’s just like one basic stat there. So I think that it’s really important to acknowledge the ways in which those dynamics are shaping the world that we’re in right now and shaping those conversations. There’s a lot of folks who are not even able to be part of the conversations that are happening right now because they are still experiencing forced institutionalization.
Maddie (00:58:04):
But yeah, I will say that, I think it’s the class thing is complicated because the, the lives of rich disabled people are significantly different from the lives of poor disabled people. But also there’s a lot of ways in which disability is really like, I’m not going to say it’s a class status. It’s not a class status, but there are a lot of ways in which I speak about disability as being forced poverty. For those who don’t necessarily have a lot of connections and access and are able to generate income, usually through outside sources, disabled people are for the most part, like really oppressed economically, they don’t need to legally be paid minimum wage, they still do not even have a minimum wage really for disabled people. And the government does not have a vested interest in supporting people who are not contributing to the economy.
Maddie (00:59:05):
So there is no real incentive for them to be able to, make money in any way. SSI and SSD are generally not living wages. They actually prohibit marriage equality. People who are on SSI will often have their benefits cut if they marry. And those benefits are already so low in the first place that you basically are not able to really marry. People on SSI also can never own more than $2,000 in their name, at all at any point. And so that kind of keeps you from being able to ever work your way out of that. It keeps from ever being able to even get to a place where you could save up to purchase a car so that you can now get to the job, which, you know, maybe the barrier to you being able to work was that you could not take public transit to work and you needed to drive to work.
Maddie (00:59:59):
You know, it really keeps you in that. People are often forced to choose between accepting benefits or earning an income, but you can’t really do both for the most part. You’re not really allowed to. And it’s just, our government penalizing disabled people for being disabled. And that really comes down to issues of labor at the end of the day. It doesn’t know what to do with people who cannot fit into this wage labor system. And so it’s like, well, if you can’t contribute to the economy, then what is the point in us doing anything more than like the bare minimum to keep you alive? And that’s kind of what it looks like. And for disabled people who have family support and monetary connections that looks very different than for disabled people who are entirely reliant on government supports who have very, very little, and that, yeah, those two things just look extraordinarily different. Those are two different lives.
Jess (01:00:58):
And I’ll also mention that for people who do work as disabled people, which we mentioned sometimes happens and do work wage labor, disability is an opportunity for further exploitation and hyper exploitation. Like, under the ADA, the minimum wage is not the same for disabled people. And it’s justified by saying that therefore, more disabled people get to work, but it’s also a way to extract surplus value at a higher rate from a particular class of people. It is a way to guarantee that you get more money from these people that you would get from others and like a Marxist lens sort of immediately reveals that. And yeah, just a way that capitalism uses disabled people for its own benefit and much to their harm.
Jess (01:01:59):
Something else that’s maybe not directly related, but I just do want to get to while we’re here, is talking a little bit about some degree of ableism discourse, the sort of stuff that is definitely more popular online, but it doesn’t not affect how we organize and other places. And the ways that like it becomes unmaterial, dematerial, whatever, so quickly, the way that, like, it becomes about like words and language and defining disability and defining categories and boundaries of disability and hierarchies of disability, and all of these other things are like equating forms of disability organizing and forms of language based stuff. Like it’s easier because it’s an easier target, just like we were talking about with like demanding socialist organizations are more accessible when we don’t make the same level of demands against a corporation or a government. These people respond us. They are next to us and therefore it feels really good to be like, yeah, give us what we need and get a response. And it’s the same thing with like, it’s easier to police someone’s language than it is to like organize a sit in.
Jess (01:02:55):
And so that feels really good and really easy and also really dilutes what disability activism is. And it’s not that it’s not important. Well, some of the situations aren’t important, but it’s not that a lot of it isn’t important. It’s just like, what is worth our time. Like we do actually have to choose where our priorities lie and what is worth, what makes an impression of what disability organizing is. And I think we have to be really active in asking those questions, just as we would be in any other context as communists asking what our priorities are.
Maddie (01:03:27):
No, I completely agree with that. And, I think ultimately one thing that I see quite frequently is people saying, well, you know, any kind of activism other than online activism, isn’t accessible to me. And I think that’s just kind of an issue of like, we just need to either be like coming together as disabled people and making our own institutions that are really making bigger demands or, you know, connecting with, socialist orgs and saying like, this is what I need in order to be involved. These are the ways that I can be involved. And one of our roles as organizers is to have a list of ideas in your head of here are ways that you can get involved that don’t necessarily involve needing to be in person or anything else. Because yeah, I mean, we just got to work harder than tweeting. [Laughing] Tweeting–we’re not going to tweet our way to a revolution. I’m sure somebody has written an article with that title, but yeah. You know, it’s just, that’s just how it is.
Jess (01:04:20):
To, to get really spicy for a second. People are always looking for reasons that they don’t have to organize.There are real reasons that like disability prevents, puts up barriers to organizing and also disabled people are not the only people who like are like, this is why I can’t organize. Like it, it comes back to the purity stuff we said earlier is another great example of like, there’s no organization that’s, that’s good. And therefore I can just stay home and that’s justified. And like some disabled people literally need to stay home. And also there’s organizing work you can do from home. And the number of disabled people I have organized with and what I do as an organizer who is chronically ill and the number of like organizations like ADAPT, which are only made up of disabled people for the most part, like are things that prove that you can be disabled, and organize. There will be people who at times in their life cannot organize.
Jess (01:05:10):
That is true of disabled people and non disabled people. And no one should ever feel like they have to always be able to do that. And also it is not in and of itself a reason. And many of the people who say I’m doing the online stuff, like, the language policing or whatever, because it’s the only form that I can do. It can be an excuse for why you don’t have to organize in the same way that it is for non-disabled people. And unless we can say that we’re not actually gonna get to get very far.
Maddie (01:05:38):
I will also say for myself personally, the biggest accessibility tool that I need is more people. Because I think I’m just, I’m just not, I can’t always be as reliable as I want to be as a person, as a friend, as an organizer in all sorts of ways. And when you are the sole point person on a project and you suddenly are just having a bad flare up and you can’t make it to the meeting that day, that is going to throw the entire thing into turmoil. Whereas when you have a really solid crew of people who are backing you up and who can, you can swap in and out of, and who can step up when you need to step back, that’s not only more sustainable for everyone. That’s more accessible for a lot of folks who just feel like they are too disabled to be able to engage in organizing, because maybe they just have different limitations or they have unexpected flare ups, or they have all sorts of other reasons. So that’s, that’s really what we need is just more people to make that happen.
Jess (01:06:43):
And like you said, basic organizing skills, right? Like making yourself replaceable is a basic organizing skill. You should be able to walk away and someone else should be able to do your work. And the more you can do that, the better an organizer you are and have been. And like, for me, that’s super important also as a person with like chronic illness where like some days I wake up and it’s like, wow, I just can’t do anything today. And making it so that like, someone else knows what I’m doing, someone else knows how to do it, means that when I move on out of this position, someone to do it, and it also means when I wake up and I just can’t do anything today, due to disability reasons, someone else can do it. And so structuring our organizations, not just me personally, but also like having our organizations have fallbacks, having you work in teams, having you teach each other skills, like those are all forms of both basic organizational skills and accessibility and disability justice.
Maddie (01:07:36):
I also think that this doing the work too is not even just the only kinds of ways in which your community supporting you can help you engage in that. I mean, one thing that I’ve dealt with previously when I was kind of point person on a campaign was I had a loss in the family and I had a flare up at the same time. And I was like, there’s no way I’m going to able to keep doing this. I really want to focus on the project. It would be nice to have something distracting, but I just like, don’t think I’m going to be capable of doing this. My organization, my organization stepped up and they pretty much covered every single meal I needed for like three weeks. And that kept me not having to step back at all. I mean, I could have if I needed to, but I didn’t actually want to.
Maddie (01:08:19):
That was where I wanted to focus my energy. And so that was another really incredible way in which like my access needs were met. That kept me really able to continue engaging in the work the way I wanted to was instead of, you know, I think I’m going to go too off topic for a minute, but I have a lot of critiques about self-care as a concept. And I love leaning into community care as an accessibility tool. I think that for me is community care. Not every time something goes wrong in my life as a disabled person, do I have to step back and say, this is a self care time. Sometimes it’s a time to lean into community. And I think that that is such an important access tool.
Jess (01:08:58):
And it also really gets at another commonly misused term of mutual aid. Like what you were describing is mutual aid. It is your comrades provide for you and when they need it, you provide for your comrades so that you are able to come together stronger as an organizer. It’s not like, I’m just giving out free meals on the street to people who walk away and I’m functionally the same as a nonprofit, like, it is like we learn how to work together to support each other as organizers. And that increases accessibility. True, actual mutual aid is a form of accessibility.
Rudy (01:09:32):
So, this has been a wonderful discussion maybe to begin to wrap it up. I have one question we’ve touched on many, many topics, and this is, I think, extremely useful beyond disability. I could, like you say, there’s many reasons why people don’t show up, one of them, they just had a baby and that maybe you can’t show up for three months and the same sort of things apply here. Right. But you know, something that I saw, I was researching some history for this episode and what the Soviet Union did for disabled people, and for most of the time they were making very, very strong accommodations. They even built towns for blind people or special factories for blind people where they would kind of put them all together in the same place and get the medical tasks. But in other, in other way, it’s like extremely paternalistic and saying like, they were only useful as long as they were able to provide labor or basically function as a person who was not blind. So maybe just to finish off, I would ask the question, like what, what would a socialist program, what would like self-determination for disabled people look like under socialism.
Jess (01:10:39):
So I can’t, I can’t really speak to the history of the USSR particularly, well, I don’t know enough. And it’s also not like my specialty, and not to get too left communist for a second, but I guess I am on, Cosmonaut right now. But like, there’s still like an element of the Soviet Union that’s very, productivist right. Like you can use Stakhnovite if you want, and there’s still an element of it, but like it’s still operating on an economy of value. It’s still like in a transitory stage. And in all of those ways, like basic forms of disability, oppression still function. If there is still some degree of association between your productivity and what is provided for you, which I recognize as an inevitability of a transitory process, like as a transition process, like there is no, just like we wake up tomorrow and it’s been the revolution and there’s free association for everyone.
Jess (01:11:31):
And also it is undeniably a part of why disabled people still experienced certain forms of oppression in the Soviet Union. And if we’re going to think about how we do better next time, which is always the question as communists, it’s not to say like that’s gone forever and that was sucked and it was terrible and bad and we should forget about it. It’s to say like, how do we do better next time it’s asking, things can go in stages and things can go in stages for different groups of the population and things can work differently for different people. Like we can cater specifically to disability needs and ask, like, how do we take them out of that form of economy sooner, is actually a really compelling question. When we talk about like socialist transition, what does it mean to enable free association, to like remove from these like cycles of production or like enforced production sooner for disabled people than the rest of the population?
Jess (01:12:20):
I think actually answers larger questions when we start to consider them. I also think that when you mentioned like paternalism and deciding for disabled people, it’s a question of democracy in the Soviet Union, which is its own incredibly complicated question, but representation matters more when there is equitable, distribution of representation overall, like we talk about the failures of representation politics in like the United States. And that’s a little more clear because look at the income distribution of Congress, like, it doesn’t matter who is in Congress. It doesn’t matter what, like race, disability status, all of these other things, it’s almost entirely rich people. And the people who are in Congress who are the least rich are also most likely to be people who are Black and brown people who are disabled people who are queer, et cetera.
Jess (01:13:12):
And like that is better. But a lot of the reason that representation breaks down is that there’s other forms of filtering going on that you are still only going to get to be a representation at a highest level if you are meeting these other criteria that make you not effective as an advocate. And so when we consider a socialist program for democracy, like it is about achieving overall equitable distribution of representation and true collective participation that then allows disability representation to be a helpful thing. And then you have to get the representation. You have to get both.
Maddie (01:13:47):
Yeah. I think the only thing I would really add to that is just to really emphasize that most disabled people can labor and have always labored. And it’s more a matter of valuing the kinds of labor that they can do in ways that don’t always fit into traditional productivity models. I think we have to figure out how to break past that. I do not have concrete answers on what that looks like. I need to work on them because doing this kind of dreaming is how we build something new. But yeah, I think, you know, what are the types of labor that we see as valuable is a question that I think even in the last couple of decades, people have been doing work in viewing reproductive labor as a type of valuable labor. The labor that goes into caring for a home, into caring for children, into physically having like carrying and then like raising children, are all really essential types of labor that are just as valuable and necessary for a society as, different kinds of productive labor.
Maddie (01:14:50):
And lots of other kinds of labor too, that disabled people are able to engage in that might not look like, you know, being able to work at a factory or anything else, being able to say like, this is what you’re contributing to your society. We have expectations of you. We expect that you maybe contribute a couple of hours a week or whatever you’re able to do. We’re going to have expectations of you, but we respect that these skills that you have are valuable and necessary contributions. And like, we’re gonna accept that.
Jess (01:15:26):
Also I know we’re supposed to be wrapping up and so me introducing a whole new complicated topic is maybe not the best idea, but I’m going to do it anyway. And it is connected to some of these things. This one’s actually coming. It was really challenging for me. It’s coming from one of my closest comrades, Zoe Belinsky whose writing you can also find online who talked about how under communism, we should actually expect a reduction in our ability to meet certain forms of medical needs. Like this is not to say that like there will be no innovation or that things won’t improve massively for a large number of people. Like you’ll need to look at a Cuban system to understand that like incredible like medical innovation and like general care that happens under like socialist projects. But at the same time, one of the dreams of free association, and one of the things that accompanies that is less specialization, like Marx writes about why specialization is a form of reducing laborers to tools.
Jess (01:16:27):
And that under communism there’ll be less need for specialization, but less specialization means to some degree, like less productivity along certain lines. And we can expect that like some extremely niche things might not actually be as accessible. And we have to be willing to say, where are our priorities? That’s the question I keep coming back to like, do the lives of most disabled people improve more because we have these general programs that improve everyone’s lives. And because these specific forms of capitalist oppression are things they no longer experience. I would say yes, that is going to be worth like the forms of, of literal production of goods. That might be less under communism, but we don’t want to sell the pie in the sky that we’re never going to grab. Right? Like, like we do have to recognize that like a socialist program might mean that like detriment of certain like forms of accessibility and that that’s worth it anyway, it actually comes back up in like this idea that like violent revolution is inherently ableist, because like stuff breaks down.
Jess (01:17:31):
It’s like, yeah, stuff breaks down for everybody. It’s bad for everybody. You know what’s also bad for everybody? Capitalism! Like, like it’s bad right now, disabled people are dying right now. When we take on the burden of revolution, what we are saying is we believe it is strategically worth it to make conditions worse for a certain period of time, because it will make conditions better permanently after that in such a significant way. That is the inherent bargain of revolution, whether you are disabled or not, will it affect disabled people more? Absolutely. Will the experience of living under communism affect disabled people more? Also absolutely. What we have to do is be willing to recognize these trade-offs and not say everything will be a perfect haven for disabled people under communism, there’s not gonna be any problems with revolution, like none of those things are true. And also it is worth it. And we need to have our principles and stand by the fact that it is worth it.
Maddie (01:18:29):
Absolutely absolutely agree with all of that. And I think that’s a lot of the work that we as disabled people are also going to need to be having those conversations among ourselves. A lot of what I know I learned from Zoe Belinsky so y’all should do a google there. I think the only thing I really want to say before wrapping, because I think that’s an amazing place to wrap is just, shout out to my organization Philly Socialists for being committed enough in their values. They’ve made massive improvements to accessibility in the time I’ve been there, like through their own physical labor, we have an office now that’s fully accessible on the first floor of a Kensington street, where people with their own two hands just, knocked down a bunch of walls and put up some new ones in order to make sure that the bathroom was wheelchair accessible and I’m truly hyped about it. I think sometimes all you can do is just find groups that are willing to commit to their values, to work with you. And, that’s all we’re doing. This is all a work in progress and that’s all accessibility is.
Rudy (01:19:29):
Well, I mean, this has been a wonderful conversation. If you have any final thoughts to leave us with, if not,
Jess (01:19:35):
For the most part, no, I’m actually going to be heading to an arbiter meeting for Philly Socialists. So, you know, the work never ends. You can find me on Twitter as @jessfromonline. If you’re interested in having these conversations more or thinking some of the thoughts that I have on this topic, because it comes up occasionally. But yeah, that’s, I think all I’ve really got, thank you so much for having us on. And this was an incredible conversation. Thank you, Maddie, for your brilliance as always.
Maddie (01:19:59):
I’m on twitter @uliveinasociety, but there’s also nothing good there and I won’t have any good conversations. [Jess laughing in the background] Thank you very much for having us.
Rudy (01:20:09):
Yeah, I’m generally, my twitter is only about soccer, but follow the Cosmonaut on Twitter and like share subscribe to our podcast. Also, before we leave, I want to make a pitch, this is the first episode for which we have a transcript. Making it was about $20 and two hours of work going through the machine translation to correct it. As we said in the episode, when you want to make stuff accessible in organizing, we can’t just complain to the manager, we have to be prepared to do some work. We want to start doing this in the near future for the episodes, but we do run on a tight budget. So please become a supporter so we can make a transcript for all episodes in the near future. I just told you what is necessary, a lot of work and some money. Please help us do this.
