Chuck interviews sociologist Laura Mauldin on her Baffler piece "Care Tactics: Hacking an Ableist World." https://thebaffler.com/salvos/care-tactics-mauldin
This is not the media. This is Hell, and if this was the more establishment media, we likely would not be focusing on today's topic as we would be too distracted by all of the shiny new gizmos that promised to make a far more accessible world for the disabled. The reality of living as a disabled is that techno solutions are not the answer the media and so many ablest, those who only see the world through the privilege of ableism, make them out to be.
Here to help us have a better understanding of the hacked life of the disabled, why hack life is necessary, and what it says about the shortcomings of accessibility for the disabled, writer, sociologist, and interdisciplinary scholar, Dr. Laura Mauldin is author of The Baffler magazine article, Care Tactics: Hacking an Ableist World. Welcome to This is Hell, Laura.
Laura Mauldin: Morning.
Chuck: In your bio, it says Laura's scholarly work focuses on how science technology, and medicine shaped contemporary life and is based on the contention that disability is a political and social category that intersects with all other social categories. How do we understand disability differently? How do we see the disabled differently when we understand them as a social category?
Laura: Oh, thanks for asking that question. That's a really good one. I think a lot of people, when they think about disability, they think about their own particular body and perhaps, a specific impairment. It's hard to think about that as something social, when we connect it in our minds to something that just happens to an individual's body, right? What we have to understand is that we all live in these bodies. It was so nice to hear your opening chat this morning talking about your own weekend with your own unreliable body in which we all have.
When we think about disability as a category, I'm talking about not focusing too much on the specificity of an impairment in that moment. While that exists and is something important to talk about. There's something that happens in the aggregate when we think about the fact that according to the CDC, a quarter of US adults over the age of 18 have a disability and more than half live with a chronic condition. When I talk about disability as a category, I'm talking about not just those things that we might immediately associate with disability like the universal symbol of the wheelchair, for example.
It's not just that. It could be a chronic illness where your functionality is impacted in some way every day. It could be something like dementia could be a disability, right? There's all kinds of different ways that it manifests. When I think about it in the aggregate, I think about the way that our systems are not designed for any of those people. Regardless of the varieties of impairments, all disabled people have to face structural barriers that are built into our systems. They affect people with different impairments in different ways, but nevertheless, in the aggregate, it's there.
I think about disability as this broad social category that's made up of a variety of heterogeneous impairments. Those are important to talk about, but in the aggregate, that's what I'm talking about, disability as a category.
Chuck: When it comes to disability as a political category, how difficult is it for the disabled to recognize that they have an affinity with other people who are disabled. As you were saying, a quarter of people can be labeled as disabled, but those disabilities are very different from one another. Some are very visible when you're looking at some people, and some are not very visible. How difficult is it for the disabled to find affinity to become a political category?
Laura: Oh, that's such a great question because I think it can be very, very difficult. I think that the first thing that we're all starting from is that disability is highly stigmatized. We're all beginning from that point. Now, I also talked about how disability is a category that intersects with all these other categories, right? If you think about men identifying as disabled versus women identifying as disabled. Because of our beliefs about what it means to be masculine and what masculinity means and what it means to "be a man", a stigmatized idea of disability can be totally in conflict with that sort of idealized notion of what "being a man" is, right?
That might mean that for men, it might be hard to come to an identity around disability. I think for women, it's hard to but for different reasons. Then we think about folks of color, who in particular ableism or the devaluation of disabled bodies is so intricately connected with anti-black racism in the US because there's a whole history there. I really recommend the work of disability justice folks out of-- There's Talila Lewis, she does great work. They do great work on identifying in the ways in which ableism and racism are so intertwined because we devalue certain types of bodies.
Ableism is wrapped up in anti-Black racism. Talila, ,their work is really important in charting the history of that and where that emerges from particularly a eugenic thought. If we think about folks in the Black community, they might have a very different process of relating to this idea of an identity as disabled. I think that's a really important question and I think the most important thing is to say, "Not everyone who's disabled has to identify. You don't have to--" There's no kind of prescription here in terms of, you must identify as disabled.
I think that we get into trouble when we start to tell people how to identify, but I do think it's important to talk about the possibilities of that and the obstacles to that, and the patterns that might appear in that.
Chuck: Do you think then that the disabled community has some shared experience or has some understanding of what it is like to be discriminated against, that is similar to the African-American experience? Is there any kind of commonality between the type of discrimination, the disabled face and that people of color face?
Laura: This idea of an analogy between groups is something that a lot of people have talked about. I guess I would just say that systems of devaluation and systems of marginalization are connected, but I think that when we start to talk about, "Oh, is X like Y?" we fail to see that often people are both X and Y. In terms of, "We know that the prevalence of disability is higher in communities of color than in White communities." I think it's important to think about the ways in which they intersect, rather than to think about the ways that one is like the other.
I think that for a lot of people, that's a first step in how they start to think about disability as a social category, where they go, "Okay, wait, if this is a social category, let me think about the other social categories that I understand," and think through it as, "Oh, maybe it's like that." I want to say, yes, those systems of oppression are linked, but I also make sure to leave room for people to occupy multiple marginalized positions. If that makes sense.
Chuck: Yes, that definitely does. You beginning your article at the Baffler saying, "Here is what doesn't go viral." You then explain Angel who worked as a house painter for decades but had a stroke three years ago that paralyzed the left side of his body. Now his favorite spot is a recliner in his living room from his perch. He can reach some essential items that he stores on a table to his right, a power screwdriver, painter's tape, and a clipboard with paper and pen. You then describe how angel installs a striker plate, something every door has that everybody sees every day. They just don't think about it.
The piece of metal on the door jam that connects the lock from the door to the doorframe. As Angel is paralyzed, it's an inconvenient process that is far more time-consuming and complicated than it would be for somebody who is not disabled. As you call it, a MacGyver-like complication and solution that he comes up with. As you point out quote, "Here's what does go viral, braille, decoder rings, sign language, translating gloves, haptic footwear for blind folks, stair climbing wheelchairs."
In other words, a preponderance of innovations unveiled to great fanfare that purport to solve disability-related problems. While the press applauds the tech sector's forward thinking and sensitivity to the needs of underserved population, the concerns of disabled people voiced again and again and again are disregarded. That would suggest then that this technology isn't really to satisfy the needs of the disabled. That the marketing and the message is for somebody else. Who is this technology, and its sales pitch four, if not for fulfilling the needs of accessibility for the disabled?
Laura: I think that people are perhaps thinking that what they're doing might be helpful to disabled folks, but the thing is, is that they don't really involve disabled folks in the process. They may not know disabled folks, or they're willing to move forward in their ideas and development of things without stopping to think that, "Oh, disabled people have lived on this earth for a long time and have figured out ways to move around. Maybe we need to talk to them about what their strategies are. What's important to them."
Instead it typically comes from this paternalistic position of like, "I'm going to make this thing for these people, assuming that those people don't have any agency or don't have any competencies of their own." In fact, they do and these, I'm going to take the example of the sign language gloves, for example, that one is just-- every deaf person I know as a working interpreter, we're just laughing and horrified at the same time that people would think this was a good idea because deaf people are like, "Why on earth would I want to first of all, wear gloves?"
Second of all, sign language, so much of its meaning is actually in facial expressions, not on the hands, which we call non-manual behaviors that are part of the linguistic message. It's a complete lack of understanding of how American sign language or other sign languages work. It's so uninformed that I can't help, but-- I haven't gone and interviewed these people who are putting forth these ideas, but my assumption-- the only thing I can take away from this is that they think they're doing this good deed.
Or they think they're doing something that's going to help this group of people who are somehow helpless, which I think is the first problem that people assumed disabled people aren't competent or don't have agency in their lives. Second of all, I think they're trying to appeal to the public when you garner public interest. When you appeal to public sympathies where again you're utilizing this group as a collective, "Oh, disabled people." as a collective, as this pitiable group, then you're leveraging that pity, which is ableism.
You're leveraging that in order to do your feel-good marketing, to get public interest and then more investment in what you're doing. That's what I think people are trying, maybe they're inadvertently doing it because they just don't know that they're being ableist, but that's my read on that situation.
Chuck: I don't know if they realize that they are reflecting pity, what do disabled people want rather than pity?
Laura: I would say first thing to say disabled people want a more accessible world. I mean that by I'm talking about the physical environment, right from-- One of the other things that gets brought up a lot are stair climbing wheelchairs, which are just ridiculous and dangerous and don't solve anything and disabled people are like, "Build a ramp." Like, "Why are we building some contraption that I could never get into and could not safely navigate and not potentially fall out of? It would be a disaster, when you could just put in a ramp?
Why not change the physical environment to make it accessible so that the stair climbing wheelchair is obsolete. It's not needed anyway, but it's the idea that it's needed. Make that obsolete. I think first and foremost, people would like a more accessible world and again, physical infrastructure, but also I'm thinking about access to basic care. People are out here trying to devise all of these wacky contraptions when most disabled people don't have access to basic healthcare. They are subject to routine diseases and illnesses just like the rest of us, but can't get care.
I think about the very tiny, small percentage of-- I'll take one example of clinical exam rooms. They aren't accessible to wheelchairs, typically. I'm thinking about access to care, both because we don't have universal healthcare in this country, access to care in a physical kind of way. Then I think about people want a more accessible world and I mean this through attitudes. People's attitudes around, "Oh, well, you're not moving fast enough." Or, "You're not productive, so you're not worthwhile." Or, "You must have such a terrible life. I so pity you because you're disabled."
Those kinds of attitudes make the world inaccessible as well. I think first and foremost, people want a more accessible world on all of those levels.
Chuck: You mentioned in your writing, how the Americans With Disabilities Act, it does impact public spaces, but not private spaces. Yet you were just explaining how in medical exam rooms, they're often not handicap or accessible. When I was just going through all of my surgical and medical problems, at one point I had to be in a wheelchair. I couldn't walk at that point and the doors for the medical exam rooms were wide enough for the wheelchair to go through.
If I was propelling the wheelchair myself, putting my hands on the rails where the wheels are, there is no way I could have gotten through that door, because just that a few quarter, half of an inch maybe of space on each side, my knuckles were hitting the door jam. I had to have somebody push me through. What does it say to you about our medical system when even the medical exam rooms that we have are not disability compliant? The Americans With Disability Act, doesn't it have to apply to hospitals and medical exam rooms as well?
Laura: Yes this happens all the time. As a New Yorker the ADA was passed in 1990, that is decades ago and it is still next to impossible to find an accessible restaurant, even though technically by law restaurants should be accessible. There's all these if you want to claim it's an unreasonable burden to retrofit your space or create accessible entrances and things like that, then you can get of a waiver. You don't have to comply if you can demonstrate that it would be an undue burden. There are ways in which the entities get around the ADA, but it is stunning to me that--
I think it says something about the utter built-in embeddedness of ableism, in everything in our world that has always ever been. That it just is so there that we don't even conceive of buildings that are accessible and we can't figure out how to make them accessible. Obviously, it costs money to do these kinds of things, to make renovations, to retrofit, those things cost money. That's the rap is that when you live in a capitalist society, that certain things cost money, then it's really hard to make it happen because of that.
It tells you something about what we value versus what we don't. In medical care in particular, I think the assumption is that medicine normalizes. In other words, it takes bodies that are impaired or broken in some way and it fixes them. That's their goal, but they make no space as you just recounted for impaired bodies to move through anything other than an ableist-designed world. That just speaks volumes about not just the physical infrastructure, but also the mentality of medicine itself.
Chuck: Is it simply far too easy to get these waivers to not have to comply with the ADA or is the problem enforcement in of some way of the ADA? Why do we have these shortcomings when it comes to complying with the ADA? If this is something that has never really made sense to me, I have low vision. One of the things that they're supposed to provide is in any fast food-- this is a silly thing. Any fast food restaurant you go into, they're supposed to have a to-go menu so you can hold one in your hands. Get it a little bit closer to your face so you can actually read it if you have low vision.
No major chain that I know of has that menu for the people who have low vision. Is this simply something that is just unenforced or do they easily just get this waiver to avoid compliance with the ADA?
Laura: I think it's probably a bit of both. I really love that example that you just gave about fast food restaurants, because someone that I know who is blind was like these new menus where at least in New York, I don't know if this is happening elsewhere, but when you go to a restaurant now they have a QR code that you're supposed to open with your phone. Instead of giving you a paper menu, you have this QR code and it opens the menu right there on your phone. She's like,"Oh this is a lifesaver because now I can have my phone read it out to me.
This makes menus accessible for me now and I hope we never go back," kind of thing. I think you're exactly right in that, the enforcement is just not there. I know so many deaf people who have tried to get healthcare even, even though it's mandated by the ADA that you get an interpreter. The healthcare providers will say, "Oh no, we don't do that," or, "You have to bring your own," or, "You have to pay for your own or you figure it out. It's like people say all the time, the ADA exists, don't you just call the ADA and there's no one to call, there's no enforcement of this.
There's no one to really call and you can file complaints of things, but the point is that the existence of a law doesn't do anything and that is a major problem.
Chuck: What do you think it says about the public's-- the way in which they feel about disability when they passed a law that everybody believes is an actual law functioning law and then there is no enforcement mechanism whatsoever. What does that say about the way in which we view disabilities? Whether it's the politicians who wrote up the law or the public that votes in support for people who do back things like the ADA?
Laura: I think it says a couple of things. The first thing I think it says is we don't care. I think that is the bottom line. I think people don't care and why they don't care is it gets a little more complicated. I think these are just some of my ideas about why people don't care. I think one of them is that people think that disability happens to someone else. They think that it's not part of their own life, so therefore it's not important. That's somebody else's problem and they should as an individual figure out how to make their way in the world, regardless, good luck.
I think there's other layers to this too, where people think not only, "Oh, does this not apply to me," but also, "I don't want to think about it because I don't want to think about the fallibility of my own body or the fallibility of the people I care for or care about and their bodies. I don't want to think about it, I don't want to consider this. Therefore I'm just not going to care about that." I am a sociologist and not a psychologist, but I do think that on some level, people have a deep existential discomfort with disability.
It prevents people from talking about it and engaging with it. That's part of the reason for my work too, is I feel like if we can just talk about it and we don't need to romanticize this. We don't need to get super emotional about it, we can just talk about what are the facts and what do we need to know and how do we just simply make sure that everybody regardless of an impairment can move through a space or be in the world. It's just a very basic thing that I think we should be able to talk about.
I also think people don't care because they think it's a small portion of the population and we don't need "those people". That we can do, sell our products or have our events and we don't need "those people". When I'm here to say that disability is everywhere. If it hasn't happened to you yet, it will happen to you. If it hasn't happened to somebody who you care about, it will. I think there's a real problem of just a real lack of care. I think people actively devalue disabled people and think they're somehow lesser. I think all those things that I just talked about are all part of the puzzle.
Chuck: Do you think there's an increasing lack of care for the disabled?
Laura: It's interesting because one of my favorite disabled writers and activists is Amani Barbara. One of the things people had asked her over on Twitter was, "Oh now that we've had the pandemic and there's so many more disabled people," because there's now millions more disabled people, millions are out of work because they can't work because they're disabled by long COVID. The social security administration does have a new order out that long COVID can qualify as a disability, things like this.
Over on Twitter, people said, "Oh Amani now that there's all these additional disabled people, aren't we going to start caring about it more?" I think the wisdom of Amani's work is that she pointed out how with every of surge in disability rights or thinking about disability, there's always a pushback. There's always actually new hostility that comes in the face of that. Part of this I'd like to add is precisely because in capitalism resources become more and more concentrated for the wealthy and there's less to spare and spread out across the rest of us.
As things get more scarce, then that hostility rises because we're all fighting for fewer resources. That hostility then comes out in notions of, "You aren't productive anymore, you can't work so you shouldn't get resources," those kinds of things. I think that in fact, with more disability conversations and more disabled people and fewer resources and fewer social safety nets, it's actually going to become more hostile rather than less.
Chuck: One of the hostilities I've faced in the past is this phrase of being one of the fake disabled. I was trying to get on a commuter train for instance, at one time and I was running late. I ran down the platform and just got on in time. When I showed the conductor my disability card to make it so I have a discounted fare to get on the train, he said, "Oh, you're one of the fake disabled." I've heard this phrase a lot in the past of people who are supposedly faking their disability in order to get some sort of access to government services.
Government services, by the way that are lacking for the disabled. How do we overcome that idea of the disabled, not necessarily being disabled, that somehow it is a huge scam? It is a big fraud that is being perpetrated on the taxpayers of the United States.
Laura: This is such an important conversation. You are right. Your experience is so spot on with so many people that I know that is also their experience. One of the things is that if you look at the fraud rate that the social security administration puts out, I think they put it somewhere at less than 1% when they go back and audit everything and look at social security income claims that the fraud rate is extraordinarily low. I think the first thing we have to do is dispel the myth, right, that this actually doesn't exist. If it does, it's extraordinarily rare.
Second of all, I think people think that the government is there for you when you become disabled and they're there to help you. I also want to dispel that myth because it is extraordinarily hard. The systems are so hostile, they're so difficult to navigate. You have to prove yourself over and over again. You have to be reevaluated every year. It is an enormous amount of paperwork. It can be absolutely mortifying to have people digging deep into the very personal nuances of your impairments and questioning those and everything feels hostile.
I think the myth is that there's fraud. The myth is that there's a government and there are social safety nets that are there to help you and they're easy to get. If that was a scam that people were running, that is one of the hardest and you barely get anything from social security income or Medicaid. The systems themselves don't even give you that much. There's not a whole lot to defraud for. I think we have to dissolve the myth that people fake it on the regular. I think we have to dissolve the myth that there's actually strong social safety net there.
I also think we have to dissolve the myth that it's anybody's business, what disability you have if you can't see it. You talked earlier about some are visible, some are not. If something is invisible to you or doesn't make sense to you and yet someone such as yourself presents a card, my advice is to mind in your own business and accept what that person is telling you. We've got a lot of work to do, and that's part of that attitudinal barrier. I think too, that people assume that it's normal to be able-bodied. That that's the typical thing.
I would say that's just not true. As I said earlier, some of the stats around a quarter of people are disabled-- quarter of adults, excuse me. Half of adults live with chronic conditions. 40% live with two or more chronic conditions. We all age into disability, every single one of us. I feel like people think that having a human body means there's this idea of what a normal human body is and that that's, what's typical. When, what's typical is disability. That's what's typical, that's a normal part of life and a normal part of the life course.
For some reason, people think that it's not. The idea that there could be this many disabled people, I think offends that assumption. That is really hard to work against when we can't talk about disability in our culture in a way that isn't stigmatizing. If we can just start having the conversations and start thinking about, "Oh, well, this is just a normal part of life. Let's talk about our practical ideas for dealing with that." Until then, people are going to have these assumptions. The attitudinal stuff is just as important as dispelling myths.
Chuck: It makes sense that those assumptions are driven by fear. We are speaking with writer, sociologist, and interdisciplinary scholar, Dr. Laura Malden author of the Baffler magazine article Care Tactics: Hacking an Ableist World. You were mentioning how QR codes can help people in fast food restaurants, for instance, and you write on YouTube, the channel Zebrena Makes It Work! is dedicated to specific disability life hacks for tackling functional tasks. While Natalie Fierce's channel shares a glimpse of how different hacks and tips, help her create a more accessible world at home.
You mentioned how-- talking about Alexa Dot speaker. It tells her the news in the morning, plays the radio and audiobooks, and reminds her to take medication. It does all this with voice activation and thus, we land on Amazon. You add over the last few years, I've spoken with dozens of spousal caregivers and some of their ill or disabled partners across the country about the hacks they use to navigate the world. Almost every person I spoke to talked about the key role Amazon plays in their lives.
Though generally a malevolent force, Amazon is also a tool many disabled people have come to rely on to fill basic needs that our shambolic healthcare system, often declines to recognize, let alone meaningfully address. Is it that Amazon purposely set about serving the disabled community and they should be commended for it, or is it our healthcare system is so underserving of the disabled that any online retail platform is better at providing the tools needed by the disabled for accessibility? Is this how great Amazon is?
Is this indicative of that? Or is it indicative of how awful US healthcare is?
Laura: I think it's indicative of how awful US healthcare is. I think the fact that Amazon has all of the supplies that they do and all of the equipment that they have on there. I don't know that there was any good intent on that in terms of we're going to try to do this for people. I think it was probably one of the best ways to make money. If you look at our GDP, a huge portion of it is medical-related healthcare overall. The healthcare market is actually always growing. This is a great way to make money if you're a company such as Amazon.
I would stake my bet on the intentions of Amazon, which is to make more money. I also think that because our healthcare system is so bad and so particularly bad at meeting the very basic functional needs of disabled folks, that the equipment and supplies that Amazon offers and offers at a lower price than other retailers is absolutely a symptom of a larger problem with our healthcare system.
Chuck: Is accessibility though, is it just a matter of poverty or having the resources in order to make certain that your life is accessible? You write people were often driven to Amazon because once they were discharged from rehab environments, they encountered obstacle after obstacle in their inaccessible homes. Bathrooms are particularly difficult to make accessible on a budget. Few Medicaid plans cover essential medical supplies, like gloves, wipes, and bed pads, which is disturbing if one even qualifies for Medicaid to begin with.
They search Amazon for hours to find a shower chair they can jury-rig as a commode. If they pair it with a five-gallon paint bucket or a shower chair that is mounted on a long bench with rails, and then can be easily slid over and into a tall bathtub. These are things caregivers often find on their own and then share with their support groups. Posting online, to alert others that they've discovered something new. This is how they share hacks. Is this something only being experienced by disabled people who are in poverty?
Are these hacks something only a small subset of the disabled must deal with? Or is this something that can be in any of our future no matter our level of wealth?
Laura: It is something that is in any of our futures, no matter your wealth. I can say this with certainty, because if I look at the demographics of the people who participated in my research, annual household incomes ranged from something like $15,000 a year to $860,000 a year. It did not matter what their particular economic class was. It was more about, oh, I now have this situation and I have to figure out how to navigate my home. Even people who had money, I will say this, some people had enough money to be able to renovate their homes so that they could build a roll-in shower, for example, such that they could just roll a wheelchair right into the shower space and not have to worry about getting over the lip of a tub or something like this.
Those people absolutely exist. It's just that their accessibility looks a little bit different because they're able to actually renovate and build an accessible space. I had one couple who had widened their hallways, so they'd actually taken their hallways and made them wider to accommodate a power chair. Others had installed grab bars all throughout the house. Others were able to install a ramp on the front of their house. These kinds of things.
It doesn't matter what your class status is. Because the world is built in an accessible manner, the way that you will figure out how to move through it, that's where I think the differences are because everybody is different and interacts with their intimate domestic space in their own way. Everybody's going to have to figure out a way to do it differently.
I think the extent to which people can rebuild their environments versus retrofitting them versus hacking them with really like you were talking about the shower chair with the bucket kind of thing, the actual hacks might look different, but everybody's got to do it.
Chuck: You write that Amazon has stepped into the breach to fill a role all but relinquished by the healthcare system is indicative of a broader failure of social provisioning in the United States. Considering what impact private provisioning of public services has had, what do you think the future of social services looks like? Will there be fewer services and even more slowly delivered services while we are left to hacking all of our own lives, whether we're disabled or not?
Laura: I think we're at a juncture here. Actually, I'm thinking particularly about durable medical equipment market. Durable medical equipment is something that is part of how the government mandates the cost of equipment and what people have to pay for, what they don't have to pay for, or how much of it they have to pay for. One thing that has started happening is that we contract out services for durable medical equipment with corporations.
What ended up happening there was a recent article in The Nation about this, is that private equity firms are getting involved now in durable medical equipment markets. For wheelchair users, this means that they're buying up all these mom-and-pop wheelchair repair places and instead now these private equity firms are consolidating and it means much longer waits. When you are prescribed a wheelchair, so first of all, not everybody can just go out and get a wheelchair.
You have to have a prescription for it. Then your insurance, depending on your insurance, will pay for a certain amount of that, all of it, none of it. It just depends, but if you have a prescription per se, a power chair, every single power chair is custom made, custom built for that one person's body and their particular needs. It can take months.
Then when you have these private equity firms getting in and consolidating and making it so that we have fewer options, it means that people have longer wait to get their evaluation for the wheelchair. Then once you get the evaluation, then you have to go for a fitting and a measurement. You go for that and you have to wait possibly months for that. Then you have to wait once they measure you and fit you and everything. You have to wait additional months to get the final wheelchair.
Then you have to make sure that it actually fits and does all the things that you need it to do. As you might imagine, if you need a power chair, you're in a little bit of an emergency in terms of moving around and being mobile. If you're waiting months upon months upon months just to get this piece of equipment, it's horrible. That's why people jump on Amazon and buy manual chairs for maybe $100 and have it delivered the next day as a stop-gap.
That doesn't mean it's necessarily safe, but it's something and it's not the best. Again, it may not be safe, but it is something that can just be a stopgap measure until you can get what you need. I think we have some choices coming in terms of how we want to fund infrastructure and social safety nets and things like if we want to develop a universal healthcare system and we want to think about getting private equity out of things like this, or if we want to go full privatization.
These are the themes that you talk about all the time, that we have choices to make around whether or not we want to fund and support the social safety nets and programs, or if we want to privatize everything and have private corporations dictating this stuff, which has very real impacts on all of us.
Again, because we don't like to talk about disability, we don't like to think about disability, we think that's not our problem, that it's just those people or it's somehow this rare thing when it absolutely is relevant to every single one of us.
Chuck: As you're saying, this issue of private equity getting in the durable medical equipment arena, my late brother who had MS. He was trying to get a wheelchair, a new wheelchair for himself for several years before he died. The new wheelchair never came through. The process that he was going through to try to get that new wheelchair that was specifically for his needs through Medicaid was just laborious and it was completely ineffective.
Can the private market provide accessibility for the disabled or is this something that only the public sector can do and if so, why?
Laura: I think that's such a good question. I think either system could potentially do it. What is the price that we have to pay for either one? It seems to me that if we let private equity firms or private corporations get involved in this, we deal with the inevitabilities of capital and the inevitabilities of consolidating that capital for the corporations over the quickness and appropriateness of providing the actual equipment such as the wheelchair that you were just talking about with your brother.
Of course, those with money can buy it and get it made faster probably. There's ways that people who can afford it, can make these kinds of things happen, but there's a price to pay for everybody else. Then if we put it solely in the public sector then we have this age-old problem of the idea that government can't work and the idea that it's just, I believe you just said your brother's wheelchair was going to be through Medicaid.
Of course, Medicaid is a state-run and it's run differently in all 50 states, which is a whole another conversation that is run so differently across state lines and that it can be notoriously slow. The hostile systems, the administrative burden, all these sorts of things that are endemic, we think, to public sector.
I think we have to think about the things that we invest in are the things that have a chance of getting better. I think that if we can figure out how to invest in these social safety nets and in these programs and make them run efficiently, for me that's the ideal, but we can't do that if we just put everything on to the public sector and then refuse to actually fund the public sector.
Of course, that's a big conversation that's happening right now with the Build Back Better infrastructure deal where they cut out a lot of the home and community-based services funding. All these issues are issues we're actively debating and I think we definitely have choices to be made and they need to be made very quickly. We'll see how this turns out.
Chuck: You write a flashy new technology prototypes that never get built for these disability technology that never really happens. "They get attention because they reflect broader ableist assumptions that disability is something singular tragic event requiring a paternalistic and ultimately irrelevant solution, a techno solution." You also add that our cultural obsession with techno solutionist thinking that suppresses our ability to imagine alternatives to this individualist vision. How does seeking a techno solution reflect individualism and an individualist vision? Does the hyper-individualism of neoliberalism lead to a popular obsession with techno solutions especially for disabled?
Laura: Yes. First of all, people think about-- Again we can go back to the very beginning of our conversation where we think those people, those poor people that need help let's give them I believe in the article I talk about it as like a technological band-aid. Let's give them something to fix their abnormal interaction with our normal world.
That's where that individualist thinking as though it's this one off thin, it's this one person, and it's they're the site of the problem, that their body is the site of the problem rather than thinking, oh, this is something that's actually typical. It's a normal part of the human life course. It reflects actually on the ways that we have built our systems that it reflects our systems being built with particular bodies in mind to typical assumptions about what kinds of people are in the world, are out in public, are part of our society.
When we think about the individual body that doesn't fit this idealized notion of a normal person then you are locating the site of the problem on the individual. That's the individual thinking that we need to create a technology specifically to mend that interaction between that one person and the larger environment rather than thinking, oh, the site of the problem is actually the social system, the way that we built our environment, our thinking about who disabled people are, what they want, these kinds of things.
If we actually think on that collective systems level then suddenly that individual technology for that person is not the answer. The answer is instead and rethinking how we design our world, rethinking the systems that we build, and rethinking our assumptions about what kinds of people are part of our public.
Chuck: One last question for you Laura. We have been speaking with writer, sociologist, and interdisciplinary scholar, Dr. Laura Mauldin,
author of The Baffler magazine article Care Tactics: Hacking an Ableist World. Laura is currently writing a book that tells the stories of disabled people and caregivers as they try to survive in ableist America. You can find out more about Laura at lauramauldin.com. That's M-A-U-L-D-I-N. Follow Laura on Twitter at mauldin_laura.
We hope to have you back on the show when you do have your new book published because it would be wonderful to have you back on for another conversation. One last question for you Laura. I promise that we do this with all of our guests. Our final question is what we call the question from hell. The question we hate to ask, you might hate to answer, or our audience might hate your response.
You quote Magnolia in Maryland saying of her disability hack support group, "Many of the small solutions that I use for whatever little thing is going wrong. I've gotten from other members of the group. They're always willing to share suggestions about big things and small." These support groups may never have happened unless the US healthcare system had not done such a horrible job serving the disabled.
Are the failings of US healthcare transforming into any political organizing or activist success for the disabled community when it comes to improving accessibility?
Laura: I think if there's an interesting two spheres as I see it, and one sphere is what I would call disability communities. I say plural because there is no one disability community, there are so many. There's differences within those communities in politics in particularities of impairment.
There are all kinds of groups that have emerged particularly thinking of the group Sins Invalid which is on the West coast who's the preeminent disability justice movement, but there's all kinds of disability justice organizations that have been around for a very long time and have been doing collective care work for each other.
There's all kinds of impairment-specific groups. There are folks who are largely bedbound, for example, who have groups on Facebook and talk all the time and support each other. There's this whole emergence-- They've been around for a long time, but I think emergence in our larger consciousness that they exist of disability communities. Then I would say another sphere would be caregiver communities.
I see this often siloed by disease type. There's, for example, MS support communities, there's the MS society, there's the Alzheimer's groups. AARP has support groups for most of those folks are caring for their aging parents. You might have adult children cared for their aging parents so that you have it siloed by disease type or siloed by particular type of caregiver. There's the Well Spouse Association, which is the national organization for people who are spousal caregivers who are caring for their partner.
There's all kinds of communities and there's these caregiver communities and there's these disability communities. What I find interesting is that both of these spheres are trafficking in disability knowledge and disability culture because they're sharing information and sharing experiences. I think both of these spheres have the potential to come together and think through the political implications on policy questions such as funding Build Back Better and home and community-based services, which help disabled people live in their communities.
When they're living in their communities, they're often relying on unpaid family caregivers. If we're fully supporting home and community-based services, it makes disabled folks living at home a possibility. It also means that they can have the support they need such that unpaid family caregivers aren't doing the bulk of the labor.
I think there's some really interesting overlaps and there's a lot going on that could be brought together. I think we could have a real powerhouse if these kinds of communities were to band together.
Chuck: I hate to give you a follow-up question, but so how difficult is disability solidarity considering all the different forms of disability and considering the fact that there are opinions from caregivers and there is also the community of the disabled. How difficult is disability solidarity?
Laura: I think it can be extremely difficult. I think people have very different experiences. Again disability is so heterogeneous. There's so many different kinds of impairments. I think people in black and brown communities have different experiences of disability than those who are white. There's all kinds of other categories that come into play that mean that it's a very rich tapestry as it were. Just like any other social movement that's trying to coalesce around a shared investment in something, it can be very difficult.
I also think that historically caregivers have, I think, talked about disabled people as or in the way that they talk about caregiving burden. That's a phrase that often gets used, the burden of care, caregiving burden, or caregiver stress, these kinds of things. caregivers are stressed and burdened not because of disability and not because disability exists. They're stressed and burdened because our systems are ableist and they don't provide the support that everybody needs.
I think one of the biggest obstacles to finding solidarity across these communities is that I think the onus is on a lot of the caregiving side to understand how ableism works and that ableism is impacting their lives and that disability is not necessarily the problem although certainly, the realities of day to day impairment can absolutely be difficult and at times tragic when it involves degenerative diseases, terminal illnesses, things like that.
Those kinds of things are realities. I think that what we have to do is get across group understanding of how ableism is impacting all of us whether you're disabled or not. To me, that's the key.
Chuck: We have been speaking with Dr. Laura Mauldin, author of The Baffler magazine article, Care Tactics: Hacking an Ableist World, for an archive of detailed examples of disability hacks sourced from the spousal caregivers and disabled folks who participated in the research for this article as well as the project, the social science research council. You can visit firstname.lastname@example.org. Thank you so much for being on our show today Laura. I've really really enjoyed our conversation.
Laura: Thank you so much for having me. I really appreciate being here.
Laura is a writer, sociologist, and interdisciplinary scholar based in New York City. She works across the humanities in fields such as deaf and disability studies (MA, Deaf Studies from Gallaudet University), as well as the social sciences (PhD, Sociology, City University of New York).
She is currently Associate Professor of Women’s, Gender and Sexuality Studies and Human Development and Family Sciences at the University of Connecticut.