How not to be ableist, and other light dinner party conversation starters

Resources for crips, spoonies, and the people who love them

Almost five years ago, in a moment of both desperation and hope, I started compiling a list of resources on ableism and allyship. [Scroll down if you want to skip straight to that list, recipe blog style.]

I was struggling with a dear friend who, in spite of her best intentions (or likely, because of them), kept stepping on my newly very disabled toes.

My ME/CFS had only recently been diagnosed, after decades of my “weird unidentified sleep disorder” slowly getting worse until it got so bad I had to move in with my parents. I was just starting to come to terms with the fact that this confusing condition — which I’d sometimes thought might just be in my head, and therefore full relief might be just one Chinese herb, homeopath, commune, or (lolsob) festival away — was actually an incurable illness that would likely keep disabling/limiting me for the rest of my life.

I was also learning about disability, disability justice, and radical acceptance. A big part of my personal work was recognizing that a disabled life is still a life worth living, that being sick without/before finding a cure is not “lost time” or “time out of time” or time “standing still,” but is actually still my life, and that the desperate, urgent, all-consuming search for a (non-existent) silver bullet to “get my life back” — as opposed to a slower, more sustainable approach towards treatment options, with realistic expectations focused more on symptom relief and gradual healing than total overnight recovery — is a recipe for misery. In order to pull myself out of the scary, dark depression that accompanied my slide from moderate to severely ill, I had to learn to live with my current reality — housebound, mostly bedbound, and very, very sick — and with the possibility that it might never change.

Meanwhile, my friend was on her own life-changing journey. She’d just had her own health and personal struggles that she’d overcome with the help of ayahuasca and entheogens, and the experience sent her deep into the world of plant medicine, New Age spirituality, positive thinking, and Law of Attraction-style philosophy. She believed any problem could be solved, and any ailment could be fixed, because that was her life experience. She believed it so strongly that she was leaving the company she owned to start a new career as a spiritual guide.

You can probably see where this is going.

Just at the moment that I needed the most validation, recognition, and reassurance that I would be okay, and still be loved, if I never ever got better, and at the exact moment I needed a break from the years- and decades-long grind of looking for (and being disappointed and bankrupted by) miracle cures, my friend was embracing a belief system that refused to accept I was sick, and she felt it her divine (and interpersonal) duty to help get me well, specifically with her own miracle cure.

And in the process, she stumbled into a whole minefield of unintentional and unconscious ableism.

OOPS. [imagine “uh oh” monkey gif here]

She would regularly suggest I do ayahuasca, certain it would help me, without knowing or asking anything about the mechanism of my illness or how that medicine might impact it/me (TLDR: anecdotal results for people with ME/CFS are extremely mixed; the medicine is contraindicated with every medication I take; and the physical toll of staying awake that long/skipping naps, and of all the vomiting, could be quite intense and potentially dangerous for someone with an energy-production/post-exertion-payback disease.)

Or she’d say she didn’t “see me as disabled,” which she meant as a compliment, and as a beautiful holding of space for the person I was before and she believed I could be again, but which actually denied my identity, my marginalization, my membership in a community with a rich history, and the actual details of my actual life, every minute of every hour of every day, while also betraying her unconscious belief that being disabled is bad and so not seeing me as disabled is good.

Or she’d invite me to events I could in no way attend, saying it was because she “believes in miracles” (read: maybe something would change and I could attend), which, to her, was a gesture of hope and love and inclusion, but to me, felt again like she was ignoring my reality, telling me I was only welcome if/when I was no longer disabled, and denying us both the opportunity to grieve my current circumstances and to find a way to actually include/accommodate me in a shared experience.

And on and on and on.

Over and over, she would try to connect, or do something she thought was kind, loving, or helpful, and I would respond with hurt, anger, and defensiveness. And then, feeling confused and misunderstood, she would respond with her own hurt and defensiveness.

After all, she was coming from a good place. She loved me. She didn’t want to see me suffer. She believed she had a/the solution to my suffering, and that it was her duty to share that solution with me.

And yet.

Ableism is so deeply baked in to our society and our culture, and especially into the wellness/alt medicine/white spirituality space, where toxic positivity, unexamined privilege, and pseudoscience run rampant, that it was nearly inevitable that she would stumble into it, unless she was actively learning to be anti-ableist, which… why would she be?

I mean, I too was hard-core into that same scene just a few years before her, throwing away my medical records because I didn’t want to “identify with illness” and thinking that if I only had the right crystal or the right manifestation meditation, I could fix everything that was wrong with my brain, my body, and my life. It took a serious medical crisis that, unlike hers, I couldn’t solve, and a subsequent crisis of faith, to pull me out of that world.

And as for disability justice, it was only a few years earlier that I was still rolling my eyes at “high maintenance” people who didn’t want me to burn incense in the house (read: they had chemical sensitivities, and I was secretly being an ableist brat about it). I don’t think I’d even heard the term “ableism” until, like, 2019. If I hadn’t been coping with very obvious disability myself, I don’t know that I would have been any less ableist than she was at the time we were having those conversations.

But I say that from the perspective of Today Molly. Today Molly is a little more patient. Today Molly (mostly) understands that not everyone suddenly knows and cares about everything I know and care about the exact moment I start to know and care about it. Today Molly knows my friend was doing her best with the information she had at the time, and had some growing to do — the same growing I had only very recently done myself.

But I didn’t have the spoons or the emotional space to be quite as gracious at the time.

At the time, I was deeply hurt and deeply frustrated by our interactions. It felt like we couldn’t speak at all without upsetting each other. She had been one of my closest friends, and now I seriously worried for the future of our relationship.

But before throwing in the towel, I decided to educate her.

That was my moment of desperation, and of hope.

Desperation, because it felt like if I didn’t do something, our friendship was over, and that possibility felt unbearable.

And hope, because one doesn’t try to save a thing one doesn’t believe, at least the tiniest bit, can be saved, and because I knew that if I could learn what I learned about ableism, she could too. And if she did that, we could once again be on the same team, instead of both feeling like the last person standing in a game of dodge ball.

The good news was, she was open to learning.

So I started looking for the best resources I could find to explain why her approach was so painful to me. To explain what ableism is. What it’s rooted in. How it shows up. And how to avoid it.

The bad news is, I also had undiagnosed and unmanaged OCD, and I collapsed beneath the weight of a world’s worth of awesome but also imperfect resources, and the inability to choose The Perfect One. Unable to just make a “good enough” choice, and afraid of overwhelming her with a long, uncurated list of videos and articles, I stalled.

And so I never sent them.

And then time passed.

She started to figure some of it out on her own. I started to adjust my expectations. We both made an effort to connect around other topics, and remember what we loved about each other. I found a different space for her in my life, and in my heart. Our issues didn’t all magically disappear, and there is still room for growth, but our relationship is in a different place now.

And I am too.

Back then, I was dealing with ableism all the time, and I was a walking raw nerve. I was dealing with it from in-network doctors who didn’t believe my illness was real, or would tell me if I couldn’t overcome my symptoms it was because I wasn’t trying hard enough. From a society that told me my death was acceptable collateral damage (e.g. the daily news assuring us all we can go back to normal because “COVID only hurts the elderly and the vulnerable.” From friends saying it too (e.g. one friend said, to my face, that COVID was “thinning the herd,” not realizing that I am the part of the herd being thinned).

And most of all from myself. Internalized ableism is perhaps the most insidious kind, and I had (and still have) all sorts to wade through, including: believing I had nothing to offer friends, family, or the world if I couldn’t be productive; staying in the closet about my illness for fear no one would ever hire me again and all my exes would wipe their brows and say “Glad I dodged that bullet”; refusing to let myself rest even when I could literally do nothing else; and denying myself accommodations or tools that could help me because I didn’t want to look/feel/be disabled.

Scary early days of severe ME/CFS and coming to terms with my diagnosis, my disability, and alllll the ableism

But these days, it’s rare I encounter ableism to my face. Most of my current friends are either more aware than they used to be, or are disabled themselves. All of my doctors are either specialists in my illness or willing to learn. Society still sucks, and every time I see a social justice rally or a party full of lefties where no one is masked, it breaks my heart. Watching the government dismantle my rights, doubly so. But I’ve learned how to compartmentalize my friends’ and family’s and society’s behavior around disability access and COVID so I don’t have to grieve every minute of every day. And I don’t constantly doomscroll bad news like I once did.

And so until recently, it didn’t seem urgent to share these links with my friend, or with anyone else.

But then [trumpets play royal fanfare], some brand new ableism landed right in my lap. Literally. (Thanks, mobile phone technology!)

The other day, in the course of an otherwise harmless chat, an acquaintance texted me a one-two punch out of the Chronic Illness Ableism 101 Handbook.First, he told me that he envied my ability to “live in the moment,” and sometimes wished he had my life. And then he told me that I should get outside more.

Like my friend, he thought he was coming from a good place. Like my friend, he was trying to help. And like my friend, he didn’t realize the steaming pile of ableism he’d just stepped in.

The problem with that first sentiment is that he did what a lot of people do: he assumed that, because I am homebound and don’t work, I must laze about all day, eating bonbons and swanning around in elegant caftans, enjoying an endless vacation. But those people forget we aren’t playing hookie for fun. We are at home and not working because we are sick.

In fact, we feel 10 times worse than most people would have to feel to call in sick to work. And we can’t just put life on pause while we recuperate. We feel that way all the time, without relief, forever, and so we have to spend every bit of energy we do have either trying to get better, dealing with the endless admin of medical appointments and insurance coverage and government assistance, or coping with the most boring and mundane parts of daily life, hygiene, and self-care.

So no, I’m not eating bonbons. I’m nursing a migraine and I’m on hold with Quest Labs and I’m trying to gather the strength to take my one shower this fiscal quarter. If I’m able to “live in the moment,” it is because I have two therapists and I have worked my ass off to be able to do it in spite of my situation, not because of it, which… guess what, acquaintance? You can too, and you don’t even have to have a neurological disease to do it.

And then there’s the second part. The telling me to go outside — or eat vegan, or use essential oils, or, yes, do ayahuasca — part.

On the surface, it seems like a well-meaning person giving helpful advice. But the reality is, unsolicited advice is annoying at best, offensive at worst. A sick person has spent countless hours trying to find ways to get well. The likelihood that you have passively discovered something that would help us, that we have somehow missed while actively looking, is very small (and the implication that we have missed it is insulting).

And even if it isn’t something you passively learned and is something you know a lot about, if it were getting people out of bed and off feeding tubes in large and consistent numbers, chances are, we’d already know that, and be doing it.

And if we’re not doing it, there’s likely a very good reason.

(Note: Most spoonies do appreciate informed advice and recommendations — we simply prefer first to be asked if we want to hear it; we value acknowledgment that we’ve likely already heard about it, and we appreciate you showing some curiosity about or interest in our situation, or doing some research on your own, before suggesting solutions.)

In this specific case, the reason I don’t spend more time outside is that being outside is deceptively hard on me. For starters, my body has trouble with state changes and location changes (think of a pet store fish being transferred to a new tank, or a rescue puppy adapting to a new home). Then there are the specific potential stressors — allergens on the wind, neighborhood noises, heat or cold (both of which my body struggles to regulate), bright light, suboptimal furniture, cushions that need cleaning or covering. And then there are the myriad items I need with me, wherever I go, to be comfortable — pillows for back and knees and neck, headphones, medications, electrolyte water — all of which need to be schlepped in and out (and protected from the elements). All of which adds up to this: for all the benefit I get from fresh air, sunlight, and nature, there are also costs to going outside, and it requires a certain amount of energy for me to enjoy — or even just withstand — it. I don’t always have that energy, or the luxury of making an outdoor hang the highest priority use of the energy I do have.

But the acquaintance didn’t ask me about any of this before making his suggestion.

He did, however, ask how he could help me get outside more — a promising move.

So I told him: My energy is best in the morning and my visitors tend to come during the day, so that is when I want to be outside, but that is also when my porch gets scorching, direct sunlight. So the best way to get me outdoors is to help me install shade for my very sunny, very hot morning/midday porch.

But that is when he flipped to Chapter Three of that ol’ Ableism Handbook: he refused the help I needed, and then argued with me for needing it.

“It’s shady there in the evening. Tbh if I were you, I’d just hang there then,” he added.

But of course, he is not me. I have different needs and abilities than him. His abled logic — that if I’m not outside at night, it’s because and only because I’m choosing not to be — doesn’t apply to my disabled body.

And the further (and stealthier) ableism he showed here is that he is only willing to help with what he considers worthy, or what he thinks I “really need,” as though he is or could be the arbiter of that.

He didn’t believe or respect what I told him about my limits, nor did he truly want to help — not in a pure way, not in a way that’s about me. He wanted to help in one specific way, only to see me do the thing he wanted me to do, the thing he believed would help his projected version of himself as me (based on almost no information about my illness or my lived experience), and only that way. Which is not really any help at all.

Now, like so many of us with marginalized identities, it isn’t always safe for disabled folks to point out ableism or ask for our real needs to be met, because doing so would put us in some kind of danger (physical danger, emotional danger, danger of losing access or resources, etc.), and this was one of those cases for me.

And so I sat. And stewed. In the hurt. In the annoyance. In the frustration.

Of his ableism. Of our mutual desire to connect and his ignorance — not his intentions or his character — being the thing getting in the way. Of my inability to do or say anything about it.

And then I remembered MY LIST.

The list I made for my friend so many years ago.

The list that, had this acquaintance only encountered something like it before, might have saved us both some heartache (because make no mistake, I’m sure his end of the text exchange wasn’t super fun for him either — he wasn’t getting what he wanted out of the conversation, and I’m sure he could also pick up on my less than stellar vibes, however much I was trying to hold them in.)

And so I decided it’s time to share it. I didn’t share it with the friend back then, and I can’t share it with the acquaintance, but I can share it with you, and with whoever you share it with, and whoever encounters it on their sojourn across the interwebs. And maybe, just maybe, something here will give you or someone you love an “aha!” moment. Maybe this will make someone’s difficult interactions a little easier. Someone’s family dinners a little more welcoming. Or maybe just soothe someone’s own soul, knowing that there are words for all of this, that what they’re feeling when they hear certain phrases or sense certain agendas is valid, that they are not alone but are part of a community who makes videos for, and to protect, us.

And in this moment — when it feels like the whole world is still claiming COVID is nothing to worry about while 10% of those who contract it end up disabled, and then ignores and abandons those 10% as soon as they’re sick, and is now trying to remove rights and benefits and research for that 10% plus all the rest of us by devaluing our humanity, in one of the most overt shows of collective ableism we’ve seen yet (in this decade, anyway) — a little education on ableism feels right on time.

So here it is. This is for you. For me. For all of us. This is by no means a comprehensive list of all the resources in the world, nor is it necessarily even the best. It is simply the list of videos, reels, articles, and podcast episodes I thought might be useful for my specific circumstance when I felt like I really needed it, mostly unabridged (“mostly” because I also have a list of ME/CFS-specific resources, which I will share in another post).

Each has a slightly different emphasis or focus. There are long videos and short ones. An article and a checklist. Some that focus more on explaining ableism and its intersectional history and others more on explaining how not to be ableist. Below I’ve tried to highlight what I like best about each one, so you can navigate accordingly, and choose the ones that interest you, or which might most directly apply to your questions, conflicts, or life.

May this bring just a little more awareness and softness into the world.

And if you have more resources to add to my list, please share them! Now that I don’t have to make my list small enough for one specific person, I can never have too many. (Plus, I’m sure I’ll need to write another essay about this sometime in the next five years, and I’ll need a new list of links to go along with it).

To my disabled friends, my informed allies, and all the people who care so much and are trying so hard but just don’t know what they don’t know yet, I love you.

Resource List

Ableism Basics (Animated video, 2.5 min)

This 2.5-minute video is an excellent overview of what ableism is, its history, how it relates to eugenics, and why anti-ableism is important (spoiler: our lives have value, and diversity makes the world better).

The one caveat I’ll add is that the video posits that it is ableist to assume that disabled people have a lower quality of life, and it is true that it’s ableist to assume that of anyone — but this is a place where the world of chronic illness-related disabilities and what many people think of as “classic” disabilities (say: blindness, deafness, or paraplegia) diverge.

In the former, our quality of life really is greatly reduced, and it is ableist not to acknowledge that. In the latter, that may not be the case, and it’s ableist to assume it. The disability justice community is still figuring out how to hold space for these two very different kinds of disability, so just keep in mind that there are many types of disability, and while what I share applies to almost all of us, some of it will differ based on the type (or even severity) of the disability you’re dealing with.

The best thing you can do about that? When in doubt, ask! (A phrase like “I know in some cases it’s ableist to assume your quality of life is lower just because you’re disabled, but in some cases quality of life really is reduced — what’s true for you?” could go a long way.) In particular, I’m always happy to answer questions about these topics, when they’re asked with respect and in good faith.

Ableism Basics, The Intersectional Remix (IG reel)

This reel does a great (succinct) job of explaining what ableism is, how it’s rooted in racism, classism, and colonialism, how nearly every form of -ism is actually rooted in ableism too, and how ableism shows up everywhere from discrimination to lack of representation, and from inspiration porn to giving unsolicited advice.

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“Disabled” vs. “Differently Abled” and how ableism is rooted in capitalism (IG reel)

This might be one of my favorite reels on ableism, not just because it does a great job of explaining why “differently abled” is both inaccurate and potentially offensive, but because in doing so, it touches on many other important topics related to ableism, including that ableism is rooted in the capitalist idea that people’s value is tied to their productivity (which is why we think it’s “demeaning” to just admit explicitly that someone can’t do so something), and that eugenics are built so deeply into our culture that we take ableist concepts for granted. 5 Stars.

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Ableism 101 (Article, 3 minute read)

Rather read than watch a video? You’re in luck! This is a straightforward, easy-to-read piece laying out the basics of ableism and how to avoid being ableist, including my favorite sections: what “everyday” or “minor” ableism looks like (e.g. wearing scented products in a scent-free environment), and what micro-aggressions look like (e.g. please don’t call your love of organization “OCD” unless you actually have OCD, thanks). As usual, not everyone is going to agree with the specifics — for example, the article advises not to ask someone how they became disabled, but I love being asked about my medical history and how my illness started because it shows curiosity about my life. But not everyone does, so a good rule of thumb is to simply ask for consent: ask if you can ask.

How Not to Be Ableist (video, 13 min)

I love this video on ableism, made by the most adorable gay autistic theater major whose favorite color is butter yellow. (I also love her whole channel, btw.) She makes a point to not only explain what ableism is and give examples of how it manifests — explicitly and implicitly, externally and internally — but to also give examples of how to examine and combat how ableism shows up in your own life. Some of her tips skew a little heavier towards the neurodivergent corner of disability (e.g. advice about adding emotional context clues in texts) than towards physical or development disabilities or chronic illness, which might be confusing to those who don’t know much about autism, ADHD, and sensory processing disorders, but that also makes this video especially valuable for those with neurodivergent people in their lives (and for helping us all expand our definition of disability). And the overall message applies to all disabilities.

How to Make Events Accessible (Article/Checklist, 4 min read)

Want something actionable? Consider this checklist from Cornell’s HR Department, of all places, which is pretty comprehensive and encompassing of many types of disabilities, or this one from the World Institute on Disability, which I like because it specifically mentions mask requirements (please, for the love of god, if you’re going to hold an event and want it to be accessible to disabled people, consider requiring or at the very least suggesting and providing masks, I beg of you). Or find another of what I’m sure are hundreds of similar checklists on the interwebs. It would be amazing if everyone who hosts any kind of event considered accessibility, but it’s especially important if your event has anything to do with healing, wellness, social justice, protest, community care, or politics. These are spaces where disabled people are very likely to be, or would be valuable and needed, and are also spaces where the stated mission or values would suggest that you’d want disabled people to be present and safe in those spaces — and if that’s not happening yet, it might be a good time to do some self-examination about why not, and whether your actions are fully lining up with your values.

Also, to expand a bit on this topic, I want to especially emphasize the first point in this article: just ask people. If you’re holding an event that people register or pay for, send an email beforehand asking what accommodations they need. If you’re thinking of hosting an event and are not sure how to make it accessible, post the question on social media. If you have the funds, offer to pay someone with experience (someone with a disability, or a disability advocate) to consult with you. And if the idea is overwhelming, know that you don’t have to do everything, all at once. If the only space you can afford is up three flights of stairs and there is no elevator, that doesn’t mean you have to give up on trying to make it accessible in other ways — you can still require masks, you can still provide free seating for those unable to stand, you can avoid using strobe lights, you can hire an ASL interpreter. Doing something is better than doing nothing. Small actions matter. And lots of small actions add up to big impact.

Ableism, Kids, School Segregation, Behavior Analysis “Conversion Therapy,” and Advocacy vs Allyship (Podcast, 60 min, with real nuggets starting minute 23ish)

This is an incredible podcast episode between two parents of kids with Down Syndrome, one of whom is also a professor of Disability Studies. I recommend listening to the whole thing, but if you’re pressed for time and want the best nuggets, start around minute 23. They discuss the definition of ableism, school segregation (yes, that’s what putting disabled kids in “Special Ed” is), how disability isn’t discussed in schools or represented in textbooks or the curriculum despite disabled people having a rich collective history of oppression, eugenics, and political action. Disability not discussed in schools. They touch on the ableism inherent in rewarding kids (with community service hours, for example) for playing with disabled kids. About the inherent ableism in Applied Behavior Analysis (ABA), a common therapy recommended for neurodivergent kids, which isn’t intended to help kids learn or feel better, but helps make them more compliant, trains them to act more “normal” (herein lies a lot of the ableism), and teaches them how to mask (a coping mechanism that many neurodivergent adults I know are now trying to unlearn how to do), and which the podcast guest compares to conversion therapy for gay children. At the 47 minute mark, they talk about the difference between advocacy and allyship. How advocacy is about fighting for rights and accessing resources for your kid, but allyship is about remembering that disabled kids are part of a community — one that you’re likely not a part of — and it’s important to address that part too, which includes helping them connect to their history and their culture and develop a positive sense of disability identity, and also remembering not to center yourself or put yourself out in front, just like you wouldn’t if you were a white parent raising a Black or Asian child.

Just a phenomenal conversation I recommend anyone listen to, but especially if you have school age children, whether they’re disabled or not. This might change how you think about the school system and how your kids interact with disabled kids their age.

How to be a Good Ally (Video, 15 min)

Another great video from Sydney Zarlengo, this time about how to be a good ally to the disabled people in your life. Again, her expertise is primarily in neurodivergence and chronic illness, but almost all of her advice applies across the board, including her version of Susan Silk’s Ring theory or comfort in/venting out model (which basically says you’re allowed to have complicated feelings about someone’s disability, but it’s best to process them with those similarly or less affected by it than you — e.g. not to the disabled person themself); the importance and impact of researching someone’s disability on your own; the power of asking questions about their experience, what they need, and what kind of interaction or help works for them; and examples of little ways to make a disabled person loved, like posting on social media about our disability or planning an event in a way we can attend it.

How to Support Someone With Chronic Illness (Essay, 12 min read)

This piece does a good job of laying out, in simple terms, what ableism and toxic positivity look like, and how to support your spoonie. The only part I take issue with is the advice about offering help. This is something that will vary from person to person, and you should ask the spoonie in your life what they prefer when it comes to help. In the essay, the person prefers that someone not ask why you haven’t done something and just offer to help with it. My preference is the other way around.

As I mentioned in the example with my acquaintance, I would rather someone seek to understand what my situation is, and ask me what kind of help I need — not ask if they can help with something they perceive as a problem. That said, a lot of people have trouble identifying what they need, or asking for help. And a lot of people say “let me know if I can help” without being specific, which puts the burden on the disabled person to guess what you mean and what you’re up for. So a good rule of thumb when offering help is to both ask what kind of help the person needs, and also to suggest some tangible options you’re available for, e.g. “I’d love to buy you a meal/do housework for you/run you an errand/help you with paperwork.” Also, if you’re an expert or professional in something — law, art, fashion, fundraising, bodywork — consider offering your services for free or a discount to your disabled friend (or to a cause that supports them). You’d be surprised what you have or can do that we might need.

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Again, this list is FAR from comprehensive, and I’d love to hear from you if there are other links you like. But I hope this is a good place to get us all started, and a reference you can return to if you ever need it. Big huge disabled love, M

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