Navigating Disability in Russia with Cassandra Hartblay

What can disability access teach us about the ways we design, maintain, and move through the world? In this episode, Eleanor Drage speaks with Cassandra Hartblay, author of Access Vernaculars: Disability and Accessible Design in Contemporary Russia.

The conversation explores how accessibility is shaped by local histories, political systems, language, and everyday experiences. Hartblay discusses the humble ramp as a technology of “good passage,” the limits of treating accessibility as a checklist, and why access must be understood as an ongoing process of negotiation, maintenance, and care. Drawing on her ethnographic research in Petrozavodsk, the episode examines disability activism, the politics of convenience, infrastructure failures, and the ways disabled people create “islands of access” in environments that remain inaccessible. The conversation also considers what different understandings of accessibility across cultures can teach us about universal design, disability advocacy, and the futures we build.

Cassandra Hartblay is a writer, playwright, and associate professor of anthropology at the University of Toronto, working at the intersections of disability studies, performance studies, critical design studies, and global post-socialism. Her research explores disability, accessible design, infrastructure, and everyday life in the former Soviet Union.

Reading List:

• Access Vernaculars: Disability and Accessible Design in Contemporary Russia

• Gleaning for Communism: The Soviet Socialist Household in Theory and Practice by Xenia Cherkaev

• Unmaking Russia's Abortion Culture: Family Planning and the Struggle for a Liberal Biopolitics by Michele Rivkin-Fish

• Keywords for Ethnography and Design,  Cultural Anthropology website

• The Question of Access: Disability, Space, Meaning by Tanya Titchkosky

• Friction: An Ethnography of Global Connection by Anna Lowenhaupt Tsing

Transcript:

Eleanor Drage (00:54)

Hi, and welcome to this very special double episode with Cassandra Hartblay! It will be an extra-long episode and our only one this month. Thanks to our editor, Belle, for putting it all together. We're really excited about it, and we hope you enjoy the conversation.

So, I am thrilled to be here today with Cassandra, who is a writer, playwright, and associate professor of anthropology in the Department of Health and Society at the University of Toronto. Her work sits at the intersections of disability studies, performance studies, critical design studies, and global post-socialism, with a regional focus on the former Soviet Union. Welcome, Cassandra.

Cassandra Hartblay (01:39)

Thank you so much for having me.

Eleanor Drage (01:40)

I'm so excited to be talking about your terrific new book. I could not put it down over Easter; it’s called Access Vernaculars: Disability and Accessible Design in Contemporary Russia. But before we dive in, can you tell us a bit about what you do and what brought you to the topic of disability and technology?

Cassandra Hartblay (02:02)

I trained as an anthropologist. But before I became an anthropologist, I was just a young nerd growing up in the early nineties, fascinated by the world around me. The Soviet Union was collapsing and featured heavily in the news, which sparked a deep interest in everyday life in Russia and the former USSR.

I watched a documentary called Seven Years Old in the Soviet Union, and I happened to be seven years old myself when I saw it. I became completely obsessed with this other world. Someone tried to explain communism to me around that time, saying something like, "Well, everyone gets the same amount of everything." To a seven-year-old, that sounded like the greatest idea ever: if we have a piece of watermelon, everyone gets the same size slice!

So, I really wanted to understand why that system didn't work. Later, when I had the opportunity to study Russian and go to Russia on a high school exchange, I jumped at the chance. My family background is Slavic; my parents were second- and one-and-a-half-generation immigrants to the US from Slavic countries, so no one was particularly surprised that I chose to study Russian. One of my grandfathers spoke Russian as a second language, and another grew up speaking Slovak. We were already a Slavic household, even if we weren't speaking the languages at home all the time.

Eleanor Drage (03:34)

Our podcast is called The Good Robot. To start us off: what is good technology? Is it even possible, and how do we work toward it? I know that as academics, we are often tempted by abstract answers, but you have seen firsthand these communist gestures toward equality for all, a vision of a certain kind of "good technology", and watched what failed in that venture. How and where does good technology actually emerge?

Cassandra Hartblay (04:10)

That’s such a great question, and I love that you open the podcast with it. I was thinking about it beforehand, and while my academic impulse pulls me in one direction, drilling down to the core of this book leads me to one answer: the ramp. The ramp is a truly great technology. It takes us back to the fundamental idea of simple machines.

We learn about simple machines in physics or primary school science: the screw, the ramp, the pulley, the lever. When I was in third grade, I remember thinking, "These aren't even machines!" But in terms of physics, they are tools that mobilize force to shift direction or leverage friction and gravity in unique ways. That’s precisely what a ramp does: it uses the combination of friction and gravity to move something up or down a slope with significantly less effort.

We use ramps constantly, and they occur naturally too. In Russian, a ramp might be called a sklon, which is the same word for a slope or a hill. Any time we talk about slopes, we think about how riding a bike down a hill feels effortless, or how stepping onto your cousin's skateboard makes you fly, hopefully not out of control! We also see it in sledding.

A ramp helps us accelerate, or move heavy loads like suitcases or strollers up and down steps by avoiding stairs altogether. It's an everyday, ubiquitous technology, found behind almost every grocery store at the loading dock, that we completely take for granted. While I could philosophize for hours about what makes technology good or bad, the humble ramp is a prime example of good design.

Eleanor Drage (06:30)

We will definitely come back to the brilliance and the perils of the "frugal ramp" in action later on.

To set the scene for our broader discussion on ramps and other infrastructure, Access Vernaculars is set in the snowy city of Petrozavodsk on the banks of Lake Onega, a vast lake in Northwestern Russia that is nearly the size of Lebanon. Like many Russian cities, its infrastructure is poorly maintained and wildly inaccessible, particularly for people with disabilities. Yet, residents across the board, disabled or not, frequently complain about how inaccessible everything is and why nothing seems to work.

That aspect of the story really resonated with me. My partner’s parents escaped the USSR about 35 years ago in a weather-beaten car with gold necklaces hidden in a jar of rotting eggplants. They still share vivid stories of how chaotic and disastrous everyday logistics were. Just last week, they were joking about how, to this day, whenever they see a queue forming in town, their instinct is to join it immediately, assuming it means a rare food item or commodity is available. It’s an ingrained reflex from growing up in the Soviet system.

Cassandra Hartblay (08:02)

A family friend who grew up in Moldova shared a similar story over drinks once. He recalled how a kvass or beer truck would occasionally arrive with a massive vat straight from the beverage factory and park on a street corner. On a hot day, people would immediately line up, pay five kopeks, take a drink from a shared cup, and pass it to the next person in line.

If it was a hot day and you saw the truck driving by, you'd start following it just to see where it parked. There was an unwritten rule in his city: whoever took the very first sip had to announce to the line whether the drink was actually good or not!

One day, he chased down the truck to be first in line. By the time it parked, ten people had lined up behind him. He took a huge gulp expecting beer, but it turned out to be kvass, a cold, fermented bread soda. Whenever you take a drink expecting one flavor and get another, your knee-jerk reaction is to spit it out. So he spat it out, and everyone in line groaned and walked away! He accidentally ruined everyone's day because he misidentified the vat.

That story perfectly illustrates the Soviet impulse to join a line simply because something might be available in an economy of scarcity, a system where sharing functioned very differently than in a liberal democratic capitalist context. Following a truck until it stopped was just a normal turn of events.

Eleanor Drage (09:53)

If everyday complaints about poor infrastructure are so widespread, what unique challenges do disability activists face when framing their complaints about inaccessibility?

Cassandra Hartblay (10:02)

Preparing for and conducting my fieldwork made me realize how much our Western perspectives rely on a liberal democratic framework built around minority rights. In democratic legal systems, protecting minority rights is framed as a foundational principle.

However, in a communist society, the primary focus is on the working class as a collective. Differences within the worker class that distracted from building communism, overthrowing capitalism, or dismantling private capital were seen as diversions from the ultimate revolutionary goal. Historically in the Soviet Union, framing issues around minority rights was extremely difficult. Excellent scholarship on human rights in Russia during the 1970s shows how aligning disability advocacy with human rights became viewed as a dissident act, leading to several disability magazines being shut down.

During my fieldwork in the 2010s, I looked at how people made politically effective complaints. It was far less effective to focus solely on the unique issues facing disabled individuals. Instead, it was much more strategic to frame inaccessibility as a systemic fault affecting everyone. Rather than highlighting a specific lack of accommodation, people pointed out shared grievances: "This train station hasn't been renovated, and it affects all of us," or "Potholes and missing curb cuts make life difficult for delivery drivers, parents with strollers, and disabled people alike."

Initially, I wondered if this approach reflected an assimilationist desire to downplay disability. But I soon realized it was a highly practical political strategy. It integrated physical accessibility, like wheelchair ramps for people with mobility impairments, into a broader, universally accepted demand for better urban infrastructure and public design.

Eleanor Drage (12:39)

In the Anglophone West, we often use "accessibility" as a catch-all term for good, inclusive design for people with disabilities. What language is used in Russia instead, and what does this reveal about how "convenience" is politicized there? How might Anglophone terms obscure alternative vocabularies that are locally expedient?

Cassandra Hartblay (13:02)

parser-safe: Absolutely. This was a really crucial set of findings during my fieldwork. As I interviewed adults with mobility and speech impairments in Petrozavodsk, and later disability activists across other Russian cities, I was deeply curious about how they conceptualized physical inaccessibility and what it takes to advocate for inclusive design.

I was particularly interested in their terminology. When I asked questions using a formal register, the kind of technical phrasing you would read in a newspaper article about accessible design, the terms felt overly rigid. In Russian, those formal phrases often sound foreign, as though they were translated directly from UN documents by advocacy groups and then passed into media style guides for journalists.

In everyday conversation, terms like "inaccessible environment" feel mouthful-heavy and overly technical, even in English. What people actually do is translate those concepts into their lived, sensory experiences. They describe what it actually takes for someone with cerebral palsy, recovering from surgery and slowly rehabilitating, to navigate the city, descending three flights of stairs, then stepping up onto a bus. It is an immense physical effort.

When I reviewed my interview transcripts, I realized respondents rarely used formal vocabulary. Instead, they relied on everyday words like smooth, peaceful, easy, or normal, words describing an experience that is unencumbered or free of friction. Returning from the field, I realized that in English, these concepts cluster around the Russian word udobno, which means "conveniently," and udobnost, meaning "convenience."

In English, we rarely use the word "convenience" in a political sense; it usually refers to personal comfort or avoiding interpersonal friction. In Russian, however, udobnost has a long history of being used politically to critique the built environment.

In Western disability advocacy and disability justice frameworks, we tend to separate these concepts: "convenience" refers to individual preference, whereas "access" refers to a fundamental right or requirement. In Russian, that distinction operates differently. The word for access, dostupnost, is more commonly used in transactional contexts, like accessing a bank account or an ATM.

The tonal register is essentially inverted: in Russian, "convenience" carries more political weight, while "access" feels more mundane and transactional. This serves as a vital reminder that when technologies and design frameworks travel globally, the translated technical terms do not always align with what is colloquially meaningful to local communities.

Eleanor Drage (17:23)

That distinction is so important, especially for resisting the pitfalls of "universal design" when it is pitched as a universal good for all. While that pitch has been useful for getting corporate buy-in, it can also obscure real complexities. I’m currently reading Aimi Hamraie's book on the history of universal design; it's fantastic for anyone interested in this topic!

Cassandra Hartblay (17:46)

It's an amazing book that profoundly influenced how I approach accessibility in my work. Hamraie shows how our concepts of design and accessibility emerged from specific historical moments and must be understood in context.

While strategic essentialism, claiming a design works for everyone, can be effective for driving policy adoption, I agree with Hamraie's view that accessibility is not a fixed checklist or a static set of design principles. Instead, it is an ongoing, dynamic process of constant negotiation that is never truly "finished."

That can be a frustrating concept for people to accept. Infrastructure requires continuous maintenance, revision, and updates as technology evolves. Beyond maintenance, there is the fundamental challenge of conflicting access needs. One person may require detailed audio descriptions, while another finds that extra audio input overwhelming and sensory-inducing.

How do two people with competing access needs share the same physical or digital space? That balance cannot be solved by a technical manual; it has to be continually negotiated as people's needs change.

Eleanor Drage (19:29)

Those are precisely the ethical headaches we stick around to solve!

Cassandra Hartblay (19:32)

Absolutely.

Eleanor Drage (19:34)

I really love how you frame accessibility as "good passage." You highlight words like smoothness that came up in your interviews, alongside the constant negotiation between comfort and discomfort. "Good passage" doesn't exist in a vacuum; everyone around us is also trying to navigate their own pathway at the same time.

Could you expand on how this works, particularly when physical infrastructure fails to deliver good passage? You describe a remarkable scene in your book featuring a ramp near a supermarket: it's perpetually covered in snow, and even if you manage to reach the top, the door swings outward in a way that blocks a wheelchair from turning inside. It’s completely farcical.

These installations meet a legal minimum; there is a ramp, but they are entirely unusable. They are thoughtless structures built by contractors checking off mandatory boxes without engaging with how the space actually functions. To them, accessibility is a one-time task: tick the box and move on. What is really going on there?

Cassandra Hartblay (20:44)

When I started this project, there was a fascinating cultural moment happening in Russia. Memes were circulating widely on Russian Twitter showcasing broken or non-functional ramps. You would see a ramp where the bottom was completely blocked by a newly built concrete step, or a makeshift ramp slapped together outside a post office to help unload delivery dollies.

In Russia, the post office is also where many elderly residents go to collect their pensions, so people were using these makeshift ramps for accessibility even if that wasn't the original intent. They were just ugly, slapdash concrete slabs.

Everyone, including non-disabled people, started sharing these images online as a symbol of shared frustration. It tapped into the classic internet meme, "Why can't we have nice things?" It was an expression of collective exasperation: Why can't we have normal design or well-maintained infrastructure in Russia?

Non-disabled citizens glammed onto these images of accessibility failure because they symbolized broader systemic issues: government inertia and bureaucratic corruption. For instance, a contractor might skim funds off the top, leading to missing handrails on a ramp because corners were cut to cover bribes.

I interviewed a junior structural engineer at an architecture firm who recalled designing accessible features according to international standards and checking off two levels of required handrails, low and high. But when she visited the completed building, the handrails simply weren't there. She had no idea where along the line they vanished, but she knew her team had designed them correctly. While architects viewed accessible design as a mark of professionalism, they had zero control over how contractors actually built the structures.

It was fascinating to see how people who didn't typically focus on disability access joined this complaint online because it echoed their own grievances about how things functioned in their country.

At the same time, I noticed that the obstacles keeping wheelchair users from leaving their apartments on a Tuesday morning weren't necessarily these absurdly steep ramps. There was one viral video of a guy donning full skateboarding gear just to ride down a dangerously steep ramp as a joke. But for my interlocutors, the real barriers were more mundane: the absence of an elevator in their building, or the difficulty of getting from their front stoop to the bus stop.

Even if they made it to the bus stop, boarding required negotiating with neighbors or passersby to physically lift them and their wheelchair onto the bus, a task requiring two or three people and a considerable amount of emotional labor. Once at a café, there was no guarantee the bathroom would be accessible.

For wheelchair users, the actual experience of inaccessibility wasn't defined by the spectacular architectural failures trending online, but by the quiet, daily friction of navigating the city. To get around, they had to map out tiny "islands of access", like a local mall that might lack handrails, but at least offered usable ramps and smooth floors once inside.

Eleanor Drage (25:12)

Speaking of memes, Russia became the focus of global internet humor again during the 2014 Sochi Winter Olympics, which was heavily promoted as the most accessible Games in history. The last time Russia had hosted the Games was in 1980, when a Soviet official notoriously told the press there would be no Paralympics because "there are no invalids in the USSR."

Sochi was supposed to demonstrate a modern shift in both mindset and infrastructure. Leading up to the Games, President Putin even met with a select group of disabled advocates for photo opportunities. But the reality on the ground didn't match the hype. What was the experience for attending athletes?

Cassandra Hartblay (26:02)

Nearly everyone heard about the chaotic state of the Athletes' Village in Sochi. Two years prior, during my fieldwork, immense fanfare and press releases were promising the most accessible Olympic Village ever built.

When the athletes arrived, they discovered that while the blueprints may have looked good, the execution was a disaster. Bathrooms didn't function, doorknobs fell off in people's hands, buildings were incomplete, and walkways were paved with loose, unanchored interlocking bricks. I even saw a meme of someone spray-painting dead, brown grass green because it had been hastily planted and never watered!

Twitter erupted with the hashtag #SochiFails, filled with images of infrastructural breakdown. Within Russia, sharing these images became a form of gentle, middle-class social critique, not an outright political protest, but a quiet, collective acknowledgment that the government had failed to deliver. It was seen as a national embarrassment on the international stage, rooted in corruption and poor subcontracting.

To outside observers in the West, these memes were often viewed through a patronizing lens, as proof of how "backwards" Russia was. The Olympians arrived to unfinished conditions, and when the Paralympians arrived weeks later, the issues remained unfixed. Everyone who attended seems to have two or three wild stories: strange tap water, broken bed frames, or getting locked in a room because the door handle fell off.

Eleanor Drage (29:13)

My personal favorite was the photo of two toilet seats installed right next to each other in a single cubicle!

Cassandra Hartblay (29:18)

That one was legendary!

Eleanor Drage (29:19)

It was hilarious, God forbid you have to share toilet time! Then there was the photo of two toilet seats stacked directly on top of a single bowl. Just layers of toilet seats!

Cassandra Hartblay (29:37)

It was so bizarre. Interestingly, when I presented this research, I received some defensive pushback. Someone once told me, "Actually, having two toilets in one stall is fashionable in high-end Moscow clubs because women like to go to the bathroom together!" I don't know how true that is, but it shows how these viral images can trigger a defensive reaction: "You just don't understand because you're not Russian; this is completely normal!"

Clearly, that wasn't the case in the Olympic Village, but it highlights how these images circulate and acquire different political meanings depending on the audience.

Eleanor Drage (30:26)

Absolutely. It's the kind of pushback you might expect, but underneath it lies that classic dark Russian humor where people don't actually expect things to improve.

Whenever I ask my mother-in-law what might happen after Putin, she quips, "How do you even know Putin is still alive? He could have been replaced ages ago by someone the same!" There is a deep-seated feeling that the system transcends time and space, and that expecting real structural improvement is futile.

Cassandra Hartblay (31:04)

During my early fieldwork around 2008, there was a brief window of optimism. Dmitry Medvedev was president, and there was a sense of openness and potential, especially among the younger generation.

It was also the era when people were excited about civic tech and crowdsourcing. For instance, a popular website allowed citizens to photograph potholes and upload them, automatically sending formal complaints to municipal authorities. It was widely covered in the news as an innovative way to bypass bureaucracy and publicly shame officials into maintaining infrastructure.

However, when Putin returned to the presidency, followed by economic instability and the 2014 invasion of Donbas, that sense of optimism evaporated. The hope that Russia might step out from the shadow of its Soviet legacy collapsed under the weight of successive political crises.

I watched people lose hope, even young adults in smaller cities like Petrozavodsk who had chosen to build their lives near family rather than move to Moscow or St. Petersburg. Suddenly, everyone was asking, "How can I move to Europe? How do I get out?"

Having visited Petrozavodsk for over a decade, it was heartbreaking to witness. Petrozavodsk is unique because of its proximity to Finland and the EU, meaning many young, middle-class residents had traveled abroad and seen alternative ways of living. Seeing that hopeful post-Soviet generation, whose parents made immense sacrifices during the economic hardship of the early 1990s, realize they were slipping back into an autocratic regime was devastating.

Eleanor Drage (34:26)

What a time to be finishing your ethnographic work. A wave of tragic accounts emerged about war-torn Ukraine, creating a new population of disabled people alongside disabled Ukrainians near the front lines who experienced appalling treatment by Russian forces.

You also address the legacy of Soviet institutionalization in Russia and post-Soviet nations like Ukraine, which led to ineffective evacuations of disabled residents during the invasion. Furthermore, individuals from racialized minority regions in Russia were disproportionately mobilized to the front lines, something I've heard many firsthand accounts about. And, of course, there is the question of what happens to newly disabled, injured veterans returning to Russia.

Remarkably, you had to tackle these evolving crises in your book's conclusion, and as a fellow academic, I deeply sympathize. You map these developments against the destabilization of US foreign policy under the Trump administration and the broader backlash against DEI initiatives.

What does the landscape for disability advocacy look like in Russia right now, and what are your reflections on war and disability in this context?

Cassandra Hartblay (35:40)

During my fieldwork, Putin's return to the presidency brought about what is known in Russian as vertikalizatsiya, an aggressive re-centralization of power back toward Moscow. Previously, regional governments enjoyed a degree of federalist autonomy.

This shift toward autocracy affected disability advocates in different ways, particularly parent-led activist groups supporting disabled children, with whom I had built long-standing ethnographic relationships. Some expressed utter devastation. They had spent decades building non-governmental organizations (NGOs) to foster third-sector community support, relying on international grants and foreign assistance programs. Under new regulations restricting foreign funding, many of those grassroots organizations were forced to shut down.

Some activists adapted by pivoting toward state resources, integrating their efforts into local health, social services, and education ministries. A few even viewed this shift positively, arguing that a functioning state should provide these public services directly rather than leaving them to underfunded, independent non-profits.

However, relying on state institutions required significant compromises regarding what could be publicly voiced. It also altered leadership structures: positions previously held by disabled self-advocates were sometimes handed to recent social work graduates lacking relevant lived experience. Leadership became a major point of contention.

Regarding current advocacy for disabled veterans in Russia, public coverage appears virtually nonexistent. State censorship, whether formal or self-imposed, makes reporting on the systemic injustices faced by injured veterans far too dangerous for local journalists.

At the same time, the state has allocated substantial funds toward military survivor benefits. In many rural regions, casualty payouts for families of soldiers killed in Ukraine far exceed what workers could earn in local industries. During my recent research in Kyrgyzstan, residents in small villages noted that joining the military offered a level of financial security for their families, via monthly survivor pensions, that far surpassed local construction wages in cities like Kazan. It reveals a deeply grim financial incentive driving military recruitment.

In Ukraine, a researcher working with disability advocacy groups in Kyiv noted that local organizations have actively built solidarity with wounded soldiers. Injured veterans and disability advocates are working together to navigate self-advocacy, rehabilitation, and the complex process of coming to terms with war-acquired disabilities.

Early in my career, I deliberately avoided focusing on war injuries because state propaganda often elevates wartime disability to a status of heroic valor. That moral framing differs vastly from how societies treat individuals who are born with disabilities, acquire them in childhood, or sustain injuries in civilian workplaces. Historically, Soviet media rarely discussed physical disability except through the heroic narrative of the wounded war veteran.

Finishing the book during the outbreak of the war was emotionally overwhelming. The manuscript was nearly ready for submission when the full-scale invasion began, and I had to pause for two months to grieve and digest events before drafting the conclusion.

The geopolitical situation created immediate publishing hurdles. One publisher hesitated to take on a project centered on Russia amid widespread calls to boycott Russian content. I ultimately transitioned the book to a university press with a strong area studies background.

Throughout my fieldwork, I constantly pushed back against the reductive notion that the US was an absolute gold standard for disability rights simply because it passed the Americans with Disabilities Act (ADA). It was easy for commentators in both the US and Russia to fall into a simplistic "US good, Russia bad" dichotomy.

Having engaged in disability advocacy since my youth, I knew how flawed the US system remained. Long before the term neurodivergent was widely used, I grew up as a high-functioning kid with undiagnosed ADHD or autism, a realization that came much later, as neurodivergence in young girls was rarely recognized at the time. I formed deep friendships with disabled peers and remained committed to advocacy throughout my student years.

In the US, disabled citizens face severe systemic hurdles: federal SSI disability payments have remained far below the cost of living for decades, trapping recipients in poverty. Furthermore, the ADA relies heavily on individual litigation; if a disabled person lacks the financial resources to sue an inaccessible business, accessibility rules are often ignored with impunity. The US system continues to grapple with deep institutional and cultural ableism.

When I was finishing the book, I anticipated that the US would continue promoting its specific model of accessibility internationally through soft power. However, recent shifts in US politics, including the pullback of USAID funding for global programming and the political campaign against DEI initiatives, have reshaped that landscape. Advocates in several former Soviet republics who relied on secondary USAID grants for disability organizing suddenly lost their funding.

Instead of concluding with a warning against imposing Western development models onto other countries, I had to reckon with a new reality where soft power supports are actively dissolving. While international designers can still learn a great deal from local, indigenous strategies of accessibility, advocates in Western nations now face a very different fight at home than they did a decade ago.

Eleanor Drage (46:12)

It is a brilliant, essential book, and I am so glad you covered these complex issues so thoroughly.

To close our episode, I would love for you to share the story from your book about the couple living in a high-rise apartment. They were assigned an "accessible" ground-floor flat, but the building's design still included steps leading up to the entrance. Desiring a room with a view, they chose to move to an upper floor instead, even though the elevator wasn't always reliable. Could you briefly share their story and what that space meant to them?

Cassandra Hartblay (47:09)

It’s a wonderful story! I know this couple well; one partner uses a wheelchair, and the other works as a travel agent and personal trainer. They saved up to purchase a home in a brand-new building on a high floor.

When I asked why they didn't opt for a ground-floor unit, they explained that the ground-floor layout still wasn't truly step-free, and more importantly, they wanted a clear view of Lake Onega. They proudly showed me their newly renovated apartment. To make the higher floor usable, they had to completely gut and redesign the bathroom themselves, buying custom tiles ten at a time to ensure they secured the materials before stock ran out.

For the husband, who had previously lived in a third-floor walk-up where leaving the house required two or three friends to carry him down the stairs, moving into a building with an elevator was life-changing. He told me that for the first time in his life, he could independently pop out to the corner store for a soda or a bag of chips whenever he wanted. That independence was transformative.

Of course, on days when the elevator broke down, they had to navigate the stairs manually. They joked that it was fortunate his partner was a personal trainer who was strong enough to carry him down several flights of stairs when necessary!

Eleanor Drage (48:49)

Good for her!

Cassandra Hartblay (48:50)

Exactly! While an unreliable elevator in an inaccessible building can be a dire situation, finding humor in these absurd moments is a core part of disability culture. Sharing these stories is how people build solidarity and process systemic frustration. Just like talking about the weather, sharing stories about infrastructural failures gives people common ground to connect, laugh, and navigate an ableist environment together.

Hearing and recording those lived experiences was a vital part of my fieldwork. Having worked in disability advocacy in the US, I was able to exchange stories from my own background, not as a wheelchair user myself, but through years of navigating inaccessible spaces alongside friends, colleagues, and community members.

Eleanor Drage (50:11)

Cassandra, thank you so much for joining us today. I am deeply grateful for your insights. To everyone listening, go out and pick up a copy of the book! We hope to have you back on the podcast again soon.

Cassandra Hartblay (50:22)

Thank you!