Access in Practice: Understanding Disability Through Lived Experience

Access in Practice: Understanding Disability Through Lived Experience

An Interactive Project

By Luna Aurora Wintergreen MPH MBA (c) MS (c)

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This is an interactive project! Click the button in the top right of the pages to see all the interactive features!

A Moment to Reflect

Before we begin, take a moment to think about the last time you needed help doing something. Maybe you were sick, injured, exhausted, or overwhelmed. Now imagine that being your everyday reality — and being told it makes you less valuable. That the people meant to support you make you feel like they are doing you a favor just by showing up. That is the experience this project asks you to sit with.

Human Rights Model

Medical Model vs Social Model

What is Disability?

It seems easy to define at first. But upon further reflection you will quickly discover disbility is more nuanced.

Intersectionality

Temporarily Able-Bodied

Disability Justice

Now, Let's Hear From the Experts

Not researchers. Not policymakers. Not clinicians. The people who live it every day. The following quotes come from six qualitative studies in which disabled people were asked to describe their own experiences. They are the experts on their own lives.

Listen accordingly.

Modalities of Oppression

What to Look For

Social Support

Healthcare Access

Disability does not exist in a vacuum. The barriers disabled people face are systemic, overlapping, and deeply connected to broader structures of inequality. The five categories you see here represent the most common ways those barriers show up in daily life. In the pages that follow, you will hear directly from disabled people who have navigated these systems — in their own words, from six qualitative studies conducted in the United States and Canada.

EconomicBarriers

Mental Health

Discrimination & Stigma

Audio Transcript

Healthcare cost burden

Healthcare access impact

Insurance Denial

Depression

PTSD

Mental Health Impact

Institutional Humiliation

Discrimination and Stigma

Internalized Ableism

Anxiety

Stigma and Stereotyping

Underemployment

EConomic Barriers

Benefits trap

Poverty and financial precarity

Unemployment

SOcial Support

Benefits Bureaucracy

Social Isolation

The Game of Life

The next part of this project is a game of chance — much like life itself. You will be assigned a scenario and navigate a series of decisions that reflect the real experiences of disabled people in North America. Some paths will feel easy. Others will feel impossible. That gap is the point. There are five possible outcomes. Where you land depends on factors that are often entirely outside your control.

Sound familiar?

Choose your own Adventure

Click on the road to play the game of LIFE!

A Note From the Author

The game you just played was built from real experiences. Some of them are mine. Chikungunya. Chronic pain. Limited mobility. Gun violence at age six. Systems that were not built for me.

The next section is personal. I share it because lived experience is data.

"I hope you feel better"

"Don't worry, you won't be disabled because of it"

"It isn't fair to the other students..."

This is also personal

I didn't just study this. I lived it. Click each circle to hear the story behind each quote.

"you can't just sit around all day"

"Have you tried..."

"People who are successful are people who make it a priority"

"Everyone is a little ADHD these days..."

Reflecting on Learning

Thank you for joining this journey of disability justice learning. I hope you leave more confident in the importance of supporting disability justice — not just as an ally, but as a favor to your future self. Disability can strike anywhere, at any time, and your chances of experiencing it at some point in your life are much more likely than not. Remember to lead with curiosity and support. Even if you don't always know the right thing to say, that's okay — even disabled people get it wrong sometimes. The important task is to keep learning and growing, actively and continuously.

Choose a comparison above to learn about respectful communication and the impact of language.

References

• Hall, J. P., Kurth, N. K., Gimm, G., & Smith, S. (2019). Perspectives of adults with disabilities on access to health care after the ACA: Qualitative findings. Disability and Health Journal, 12(3), 350–358. https://doi.org/10.1016/j.dhjo.2019.03.009
• Halpenny, C. (2023). "We need to take care of each other, and that's what this program was helping to do:" Disabled women's experiences of the Ontario Basic Income Pilot. Canadian Journal of Disability Studies, 12(3), 27–58. https://doi.org/10.15353/cjds.v12i3.1033
• Johner, R. (2013). Disability and poverty: Stories that resist attitudinal barriers to inclusion. Canadian Journal of Disability Studies, 2(3), 31–54. https://doi.org/10.15353/cjds.v2i3.100
• Kurth, N. K., Hall, J. P., Gimm, G., & Smith, S. (2023). Disability stories: Personal perspectives of people with disabilities on navigating the U.S. health system. Disability & Society, 38(9). https://doi.org/10.1080/09687599.2021.2004879
• Lindsay, S., Dain, N., & Hsu, S. (2024). Exploring the employment experiences of young adults with multiple minoritized identities: A qualitative study focusing on race and non-apparent disabilities. PLOS ONE, 19(11), e0313295. https://doi.org/10.1371/journal.pone.0313295
• Smith-Carrier, T., Montgomery, P., Mossey, S., Shute, T., Forchuk, C., & Rudnick, A. (2020). Erosion of social support for disabled people in Ontario: An appraisal of the Ontario Disability Support Program (ODSP) using a human rights framework. Canadian Journal of Disability Studies, 9(1), 1–30. https://doi.org/10.15353/cjds.v9i1.594
• Vick, A. (2014). Living and working precariously with an episodic disability: Barriers in the Canadian context. Canadian Journal of Disability Studies, 3(3), 1–28. https://doi.org/10.15353/cjds.v3i3.171

You've been in a bike accident which has left you with permenant mobility struggles

You are biking home from work when a car hits you. You survive. You sustain a spinal injury that results in permanent mobility limitations. Moving through the world is no longer simple. Many buildings, sidewalks, and transit options are not accessible. Rehabilitation is ongoing and expensive. Returning to work is difficult. Your independence changes in ways you did not expect.

While shopping at a deparment store you become the victim of a mass shooting

You survive. You are hit by a bullet in the spine, which has led to paralysis and the need to use a wheelchair. You struggle to leave your home. The trauma of a random act of violence continues to shape your daily life.

You Get Long COVID

While commuting to work, someone sneezes on you and you get COVID. You take a week off, expecting to recover. You do not. You develop long COVID. You experience chronic fatigue, brain fog, and limited energy. Work, socializing, and daily routines are no longer predictable. It takes years to see a specialist. Accessing disability support is slow and difficult. You lose your income and can no longer support yourself. You move in with relatives.

You contract lyme disease

At first, your symptoms seem mild. You feel tired, achy, and assume it will pass.Over time, your condition worsens. You experience chronic pain, severe fatigue, and difficulty concentrating.Your energy becomes unpredictable. Some days you can function, others you cannot.It takes months or even years to receive a clear diagnosis. Your symptoms are sometimes dismissed or misunderstood.Work becomes difficult to maintain. Daily routines require more effort and planning.Accessing consistent treatment is challenging, and recovery is uncertain.

You live a long healthy life

At age 73, you have a stroke. You experience significant difficulty communicating and caring for yourself. Daily tasks like cooking, hygiene, and managing your home are no longer possible without support. Your children live far away and are unable to care for you. You become dependent on social services.

Quotes about Depression:

• Every time I interacted with ODSP I would go into basically a three-day depression where my body hurt, I couldn't move…I was triggered…You are directly impacting me, wounding me to the point where I'm not going to be functional for my family. My daughter has to see me lethargic and in pain and crying and not even showering. I can't even describe how it impacts me and the damage that it felt to my soul. (Halpenny, 2023)
• I have fibromyalgia, and it feeds on stress. The worse my stress gets, the worse my pain gets, the worse my sleep gets, the worse my fatigue gets, the worse everything gets. So not having to worry about money constantly eased my stress level…I'm bipolar too, so even when my mania is under control, I still suffer from depression. Even the depression lessened a little bit because I didn't have the stress and anxiety that was feeding it all the time. Some people certainly noticed that I seemed lighter to be around. I think that I just emanate these waves of stress when I'm on ODSP because you never stop thinking about money. (Halpenny, 2023)
• If we all knew we had enough, that we would never lose our home, that we would never be without food and medical supplies or whatever we needed…I think that gives people room to dream. When you don't have enough, dreaming doesn't happen. The need to focus on survival is too much. It's too scary to dream and it's too depressing to dream when you can't attain it. (Halpenny, 2023)
• I was supposed to be job searching, but it was really difficult for me. It was so hard. I was deep in the depression. I could barely manage applying to one job per month, because it was so disheartening. (Lindsay et al., 2024)

Quotes about Institutional Humiliation:

• When I originally applied for ODSP, it was like sitting in front of a warden…They go into such in-depth personal information which they really don't need. It was degrading, completely degrading. It made me feel like I wasn't a mother…It made me feel like I was less than. They almost shamed you…They refused me for seven years. On the seventh year, I had enough. I said, 'I'm going up against them in judicial.' They bring you into this fake court thing and they have a doctor there that's supposed to be a specialist…They're the ones that decide, and they don't even know you…I swear my medical file was at least 3 to 4 inches wide. They had all that information, yet they were still denying me my disability. (Halpenny, 2023)
• It was nice to not have to prove that I was disabled to get the basic income. I was low-income and that's the only thing they really needed to know. They didn't need to know how sick I was, and what my illness entailed, and what I could and couldn't do, all the things you have to prove with ODSP. (Halpenny, 2023)

Quotes about Underemployment:

• Service providers want you to get a job as fast as you can regardless of whether the job suits you. I have back pain and physical labour is not what I want but they come back with a job at Home Depot putting lamps together. They're only interested in placing workers in menial labour.(Vick, 2014)
• I wanted to work three days a week but the employment worker said five. I told them I couldn't do that. They finally cut it down to three days, three hours a day. They sent me to a factory to work on a saw band. I told my worker I have seizures and she said "you're totally fine to work on this big machine by yourself. It's simple and easy." I had a seizure three different times. (Vick, 2014)
• I connected with disability job supports through the Canadian Paraplegic Association and the Ontario March of Dimes. I was a nurse in India for many years but they find me jobs like labourer, customer service. I am still looking for a medical job and it's been six years. (Vick, 2014)

Quotes about Unemployment:

• I was working at a cookie factory and I had a seizure on the production line. When I regained consciousness I tried to talk to them about the epilepsy and that I needed a break a few times a day. Then I had a holiday. When I came back, they told me we don't need you anymore.(Vick, 2014)
• I worked in the portrait studio at Walmart. The manager started raising an eyebrow when I had a seizure at work. I heard her say "I don't think he should be working here anymore because of his health." Then it was evaluation time. They let me go. Officially it was failure to meet company standards but I know it was my health. They covered it up. (Vick, 2014)
• "If you're a disabled person who gets a job and then disclose your disability, you're still at risk of being the first to get cut, if they need to lay off people. . .unless you are over- qualified and proving that. . .you make up for being disabled." (Lindsay et al., 2024)
• From the first day I started university in that program, I was kind of behind, because that concept of who you know, I was already a few steps back. . .That makes it harder to have the same types of opportunities once you're finished university. (Lindsay et al., 2024)

Quotes about Benefits Trap:

• I applied for disability. I was denied the first time, because I had too much money in my savings. I had like $6,000, and you have to have a maximum of $2,000. So, I ended up having to spend my money in order to go on disability. I receive SSDI. I had to go through the whole process of being eligible for it, and then being certified, and recertified. And because of the fact that I had worked in an upper-level financial capacity, I'm at the upper level of benefits. That excludes me from receiving [health insurance from] Medicaid. I can't earn over, I think the last number was $1,220 a month, because it disqualifies me from getting disability benefits. So it's something that I always need to be careful about. (Kurth et al., 2023)
• SSI has stopped me from working and I have been trying to fight it. Every year I get a new case worker. And every case worker tells me something different. One year I got told, yeah, you can make up to $1700 a month, so I got a job. And I got a letter that they were taking my SSI away. Then the next case worker goes, you can only make $68. Well, the case worker I have right now says $89. No one is clear. (Kurth et al., 2023)
• So, if you're working, you're probably just breaking even because there are still restrictions on that. If you're on SSI, you know how much you can make. And if you're on SSDI … you have to worry about the threshold. So, if that threshold goes over whatever it is – I think it's $1190 – you'll lose your benefits … you've already talked to your boss and said "I can only work this many hours" – and you have to start all over again. (Kurth et al., 2023)

Quotes about Healthcare Cost Burden:

• I pretty much couldn't work anymore. I'd run through every bit of savings I had … and qualified for Medicaid for that [surgery]. But the financial impact– being 29 and needing these major surgeries that could be life-altering, that would enable me to breathe again, eat again, see and have visual acuity without pain, I was willing to pay … So definitely, my medical care was over $100,000, and some of it was covered by insurance. A lot of it, I'm going to estimate 40% of it, was not. And so being able to afford my diagnosis, and to live, and to buy groceries, and my medicine was very difficult. My neighbor … tells me that he stopped taking some of his medication. This is a man who has worked his whole life, put everything in to take care of himself and his family, and is now at a point where with disability he can't work anymore. He's been working his whole life … paying his taxes. But now he stopped taking medication because … [he] can't afford $700 a month. He is literally shortening his lifespan so his wife doesn't go without food. That's where we are as a nation. In order for me to get the medication and the treatment that I need, I have to have a job with good health insurance. There's no way in the world that I would be able to pay for medication. I have to work for a company that offers health insurance and will cover my medications. (Kurth et al., 2023)
• I already cashed out all of my retirement to pay for surgeries, but there was just no other way around it. It's really unfortunate that major health issues and poverty go hand in hand. (Kurth et al., 2023)
• "I'm on Medicare, which I got when I was on disability and, of course, they only pay 80% so when things get any kind of expense, my 20% is difficult to come up with. It's just horrible to be in a situation where I can't afford the surgeries that I need and the fact that I can't get all the prescription medications that I need. These are two things that never crossed my mind that would happen to me and the fact that I can't afford food-those three things are just blowing my mind."(Hall et al., 2019)

Quotes about Insurance Denials:

• "The drug that helps me absorb phosphorus and calcium into my bones is [drug name]. Without that, I would be stuck in my chair for the rest of my life. And insurance has never wanted to pay for that. But, they'll pay for pain meds. And [drug name] has gotten harder and harder to find, because there's no money in my disease, because it's not like a penis or hair loss or whatever."(Hall et al., 2019)

Quotes about Poverty:

• I started to feel unwell, and I got sicker and sicker. They didn't know what was happening. Really severe fatigue was setting in…I was declared officially disabled…It was while receiving some mentorship around starting your own business that I did a cash flow statement and realized because of my disability and the number of hours I could actually work, I would never escape poverty. (Halpenny, 2023)
• [With basic income] if I cannot work because of disability, it's not going to mean that I'm not going to eat…There's a flexibility with the additional income [that] I think unless you've lived with really nothing, you don't understand the lack of flexibility you have in your life without that little extra…The options [others] have when they encounter a crisis are not the same options I would have.(Halpenny, 2023)
• My life is going nowhere but I can't change that. What I want to do never happens. (Johner, 2013)

Quotes about Social Isolation:

• I got to spend more time – as weird as this even sounds – with my kids. Going to the park for picnics, which was kind of not my norm, going down to the river to drink coffee. When you're on disability [ODSP], you can't really afford the coffee. (Halpenny, 2023)
• [I]t is not coincidental that the people that I'm closest with are also on disability. We've opened-up gradually over time. They understand the obstacles in terms of moving ahead…It is hard to say, 'This is why I've been out of work or why there exists a gap in my employment history.' Then you start massaging your resume to try and fill in those things with volunteering…When you are being interviewed for any position there will be questions directed at a particular time of your life. You're self-conscious…it is anxiety- provoking. It takes a lot of psyching up to get through that because you just don't want to come across as incapable…We've overcome far too much in terms of other stigmas to be socially left out…ODSP only magnifies the problem for [disabled people] and it only becomes that much more isolating for them. (Smith-Carrier et al., 2020)

Quotes about Benefits Bureaucracy:

• I think different agencies have different, totally different rules. It makes your head spin. Why don't these agencies get together and say, 'Okay we're going to deal with this, this way…' Let's try to have some consistency around the rules. Unfortunately, everybody at ODSP, I believe, is not on the same wavelength. Some workers will cover hearing aid batteries. Then another person goes in and asks their worker for this and the worker says, 'Oh no, we don't cover that.' (Smith-Carrier et al., 2020)
• I think the problem is the people that control and make the rules. They do not know because they work fulltime. They do not live below the poverty line. They can't understand because they've never been here. (Smith-Carrier et al., 2020)

Quotes about Anxiety:

• It started with not being able to sleep, because I was worrying. How am I going to pay the mortgage, and how am I going to do this, and how am I going to do that?...I put so much money towards the business and had this line of credit that I had to pay off, which the money would no longer be there…I went probably about five days of not sleeping. And then I started into what I knew was a panic attack…It went on for four days and four nights, and then I checked myself into the hospital. (Halpenny, 2023)
• [I]t is not coincidental that the people that I'm closest with are also on disability. We've opened-up gradually over time. They understand the obstacles in terms of moving ahead…It is hard to say, 'This is why I've been out of work or why there exists a gap in my employment history.' Then you start massaging your resume to try and fill in those things with volunteering…When you are being interviewed for any position there will be questions directed at a particular time of your life. You're self-conscious…it is anxiety-provoking. It takes a lot of psyching up to get through that because you just don't want to come across as incapable…We've overcome far too much in terms of other stigmas to be socially left out…ODSP only magnifies the problem for [disabled people] and it only becomes that much more isolating for them. (Smith-Carrier et al., 2020)
• "I'm applying to jobs but. . .nobody wants me. Nobody wants to hire me. . .so I was like, I'm not good enough to get any kind of job and that really affected my mental health." (#7) (Lindsay et al., 2024)

Quotes about PTSD:

• I think fundamentally the poverty that I have lived in for the last 10 years, there are numerous factors [contributing to it]…One of those factors is 100% the fact that I'm a woman, and the fact that I'm also a survivor of sexual assault and I consequently have PTSD and numerous…mental health issues around that that affect my ability to work. (Halpenny, 2023)

Quotes about Internalized Ableism:

• I had to go submit like 25 pieces of documentation to get back on to ODSP from basic income. I got out of the office and into the parking lot and burst into tears. I realized that all of a sudden, I didn't feel like the same person I was yesterday. My intellectual brain was like, 'you're the same person, you're still doing the same things!' But it's that label that is completely different, the difference between 'entrepreneur' and 'disabled.' (Halpenny, 2023)
• I am highly conscious of people's belief that I should feel empowered from working…And how work is supposed to give me more dignity…But the question that runs through my head when I hear all this is when do I get to take care of myself? And do what's best for me? When do I get to not be so exhausted that I fall asleep without making dinner? Or not be able to take care of my home and I'm too embarrassed to have people over? That's quite literally – even with basic income – what happens to me, because working takes energy. This concept that work is the be-all, end-all for a person with a disability is wrong…I'm a sick person, right? I have a disability. And I'm sick. But I'm not allowed to act sick, because that's supposed to not have dignity...Am I not allowed to have a disability? We claim I have a disability, and yet, I'm not allowed to be different. (Halpenny, 2023)
• People think people with episodic disabilities are lazy or that you're using your symptoms as an excuse. They don't understand you need to have the right job to maintain employment that considers your needs. It affects your self-esteem. (Vick, 2014)

Quotes about Stigma:

• There are some people that used to look at me and say, 'there's nothing wrong with you, you look okay.' Well, what they don't realize is that I have fibromyalgia; I have multiple myeloma which is cancer in the bone…You don't see that…I think women are the ones that get the brunt of it: you're lazy, you have kids, you're staying home. I remember when I went on ODSP, all the parents at my kids' school are all married and have two incomes coming in, and I'm alone. It was always critical of me…The single mother thing is a hard thing to pull off, let's put it that way.(Halpenny, 2023)
• It was just as hard on the pilot as it was on ODSP, just different comments. If you're on ODSP it's, 'oh, you're faking, you can work…' Automatically thinking that you're not disabled unless you're in a wheelchair or missing both limbs…With the basic income, it was, 'oh, money for nothing, how come you're getting it and we don't get it, it's not fair, they shouldn't give it to some and not others…' Others saying, 'oh yeah, the beer store will be busy, the crackheads are going to be happy this week,' things like that…The words change, but the intent and what's behind them is the same. (Halpenny, 2023)
• I already cashed out all of my retirement to pay for surgeries, but there was just no other way around it. It's really unfortunate that major health issues and poverty go hand in hand. (Kurth et al., 2023)

"it isn't fair to the other students..."

During my undergrad, I spent two and a half years living with an intractable migraine — a migraine that never stopped. Not for a day. While navigating near-constant neurological pain, I enrolled in a chemistry class and struggled to keep up with the material. I had documented disability accommodations. I was doing everything right. My professor told me it wasn't fair to the other students that I received extra time. This is what equity looks like when it is misunderstood. Equality would be every student receiving the same amount of time. Equity is every student receiving what they need to have a genuine chance at success. My professor was committed to equality — and in doing so, was profoundly inequitable. No one else in that class was doing homework through two and a half years of unrelenting head pain. No one else was managing a neurological condition that made reading, concentrating, and retaining information exponentially harder than it should have been. Giving everyone the same time does not create fairness when everyone is not starting from the same place. Accommodations are not an unfair advantage. They are an attempt to level a playing field that was never designed for bodies like mine. The truly unfair thing — the inequitable thing — was being expected to perform identically to my peers while my nervous system was on fire, and then being told that the bare minimum support I had been legally granted was somehow a threat to others. My professor was not protecting fairness. They were protecting a system that was never fair to begin with.

"Don't worry, you won't be disabled because of it"

Even doctors are not immune — in fact, they are often the worst perpetrators of ableism. I once saw a specialist for my Chikungunya Arthritis at one of the best hospitals in the United States. After diagnosing me, he told me not to worry because I "wouldn't be disabled" by my condition. I was already disabled. I had limited mobility and chronic joint pain. I had been approved for federal disability benefits in the US — a strenuous process that took over two years just to get approved. But to this specialist, because I was still ambulatory, I didn't count. This is the medical model of disability in action. If you can walk, you are not disabled. Never mind what you cannot do. Never mind the pain. Never mind the paperwork, the fights, the years of proving yourself to systems that would rather not believe you.

"Have you tried..."

"Have you tried...?" Drinking more water? Resting more? Exercising more? Eating more protein? Cutting out sugar? Putting your feet in alternating hot and cold water? Positive thinking? Being less negative? I have had the great privilege of seeing some of the best specialists in the United States, at leading hospitals in Massachusetts and California. People with decades of expertise could not cure me. And yet somehow, people with no medical training whatsoever feel qualified to tell me what I have been doing wrong. This kind of commentary is not helpfulness; It is dismissiveness dressed up as concern. It places the blame for disability squarely on the disabled person — the implication being that if only I had tried hard enough, eaten the right things, thought the right thoughts, I wouldn't be so sick. I have tried. I am still disabled. Those two things can both be true.

"Everyone is a little ADHD these days."

Every time someone says this, they are telling on themselves. First, if someone says this to me, I genuinely wonder if they actually are ADHD but are too steeped in ableism to acknowledge it and seek support. Second, yes — our attention spans have been shortened by a fast-moving, overstimulating world. That is not the same thing as ADHD. Not even close. ADHD is not a personality quirk or a byproduct of too much screen time. There is also a growing movement to rename it entirely, because "attention deficit" is a misnomer. It is not a deficit of attention — it is a dysregulation of attention. And it rarely travels alone, showing up alongside other forms of neurodivergence that are variations of human experience, not problems to be fixed. Reducing that to "everyone's a little like that" doesn't make disabled people feel included. It erases the very real ways our brains work differently — and the very real world that was not built for us.

"People who are successful are people who make it a priority."

This statement is not just ableist. It is a failure of social justice altogether. I grew up in one of the poorest cities in my state. Many of my friends worked through high school to help support their families. They could not do homework, join sports teams, or build the kind of resume that "looks good" on a college application — not because they lacked ambition, but because their priority was immediate survival. I know this firsthand. At 18, a few weeks after my birthday, I was entirely on my own. No family support, no safety net. I wanted to go to college. Instead I went to work. Not because education wasn't my priority — but because survival came first. Telling someone in that position that success is simply a matter of prioritization is not motivation. It is cruelty. A few years ago a phrase circulated online: "You have the same hours in a day as Beyoncé." It was meant to inspire hustle culture. But most people do not have the same hours as Beyoncé — because most people are also doing their own laundry, cooking their own meals, caring for their families, and holding together households without staff or support systems. Domestic labor is real labor. It consumes time and energy. Its invisibility does not make it less real. And then there is illness. Two years ago I was in a serious and traumatizing car accident. I had to significantly reduce my course load. Not because my priorities had changed. Not because I stopped caring. But because I no longer had the same hours in the day that I once did. My body had changed what was possible. Success is not a matter of willpower. It is a matter of access, support, and circumstances that are often entirely outside our control. The sooner we understand that, the closer we get to actual justice and inclusion.

"You can't just sit around all day."

This is a criticism I have heard more times than I can count — mostly from older family members so deeply committed to worshipping at the altar of capitalism that they cannot see value in a person's existence unless that person is visibly, measurably "contributing." With chronic fatigue, there have been months when I could barely get out of bed. Months when taking a shower would consume enough energy that the rest of the day was simply gone. That is not laziness. That is a body doing its best under conditions most people cannot imagine. But this attitude is not limited to my family. Doctors say it too. Exercise is frequently prescribed as a cure-all — when in reality, for people living with Long COVID and chronic fatigue syndrome, exercise can be actively harmful. It can trigger crashes that last weeks or months. The medical community is still catching up to what disabled people have been saying for years. And for the record: I have not worked full time in almost two years. I am also currently enrolled in two master's programs simultaneously. I am chasing down specialist appointments, fighting with insurance companies, managing medications, and advocating for myself through systems that are not designed to make any of that easy. If that is what sitting around looks like, I invite anyone to try it. Rest is not laziness. Survival is not idleness. And a person's worth was never determined by their productivity.

"I hope you feel better."

This is a perfectly kind thing to say to someone with a cold. It is a much harder thing to hear when you are chronically ill and "better" is not a destination you are traveling toward. A few years ago my wife and I were planning to fly back east to visit family. I texted one of my oldest friends to let them know I would be in town. Then I had a flare. COVID rates were also high at the time, making flying genuinely unsafe even masked. I had to cancel. When I explained that I was chronically ill and couldn't make it, they responded: "I hope you feel better." They meant well. I know that. But what that phrase communicates — even when it comes from love — is that illness is a temporary obstacle. Something to wait out. Something with an end date. For people with chronic illness, there is no end date. This is not a detour. This is the road. "I hope you feel better" asks me to imagine a version of myself that may not exist. What I needed in that moment was not hope for a cure. I needed someone to say "I'm sorry you're going through this" and mean it for the long haul, not just until the next time we make plans. You don't have to fix it. You just have to listen and offer support and kindness.

Welcome to the heart of this project. What you are looking at is a map of the five major ways that disabled people experience systemic oppression — Mental Health, Economic Barriers, Healthcare Access, Discrimination and Stigma, and Social Support. Each bubble you see represents a subcategory. Click on any bubble to read direct quotes from disabled people who participated in six qualitative research studies conducted in the United States and Canada. A few things to know before you explore. Several quotes reference ODSP — the Ontario Disability Support Program — which is Ontario's government assistance program for disabled people, known for being difficult and often degrading to navigate. Some quotes also reference the Ontario Basic Income Pilot, a short-lived experimental program that provided guaranteed income with far fewer requirements. Participants often describe the contrast between the two programs as the difference between being treated as a burden and being treated as a person. Other quotes reference United States SSDI and SSI — federal disability benefit programs that provide income support for people who cannot work due to disability. Both the Canadian and United States systems are notoriously difficult to navigate, and that difficulty is reflected in what you are about to read. These are not statistics. These are people. Take your time.