Disability Didn’t Become Cool. You Just Started Seeing Us.

The mobility aids you’re calling “accessories” may be the reason disabled people are out in public in the first place.

On September 5, The Telegraph published an article with the headline “How having a disability became cool.”

As a 31-year-old woman with multiple chronic illnesses, I clicked it knowing there was an excellent chance I was about to get pissed off.

Reader, I got pissed off.

The article takes aim at a phenomenon it associates particularly with young women: people talking openly about conditions like POTS, Ehlers-Danlos syndrome, ME/CFS, ADHD and other chronic illnesses and disabilities online. It worries about “sickfluencers,” social contagion, overdiagnosis, people incorporating illness into their identities, and patients appearing “decked out in the accessories of their disease.”

There are legitimate conversations buried somewhere underneath all of that.

Medical misinformation exists. Social media can spread absolute garbage at extraordinary speed. People self-diagnose incorrectly. Influencers can monetize fear. Doctors can overdiagnose things, underdiagnose things and just plain get things wrong.

We should talk about all of that.

But we should be able to do it without looking at a generation of chronically ill and disabled people—particularly young women—who are finally visible in public and online and deciding:

Well, this seems suspicious.

Because I have another possible explanation. Maybe disability didn’t suddenly become cool.

Maybe you just started seeing us.

What exactly is a sick person supposed to look like?

One section of the article particularly bothered me.

In discussing the idea of a “sickness identity,” the authors opinion is that chronically sick people should “withdraw from regular life, struggle with previously simple tasks, receive support and condolences, and “rarely, if ever, get better.”

The proposed antidote is a “recovery identity.”

I read that paragraph several times. Because whether intentionally or not, it creates a fascinating picture of the appropriately disabled person.

They withdraw.

They stop doing things.

They struggle privately.

People feel sorry for them.

They remain safely tucked inside the social role we have assigned to illness.

And apparently that’s more believable. So I have a question: 

Where, exactly, would you like disabled people to go?

Because I thought the entire point of accessibility was that we didn’t have to withdraw from regular life.

The mobility aid is the reason you can see me.

I use a mobility aids.

I’m also 31.

Those two facts have occasionally been difficult for me to hold at the same time.

I’ve worried about using one publicly. I’ve worried about people looking at me. I’ve worried about whether I look “disabled enough.” 

But the fear isn’t only about whether strangers believe I need it. It’s also much more human than that.

Will people still want to be my friend?

Will somebody want to date me?

Will someone meet me and see me, or will they see the rollator first?

Will I walk into a room and immediately be placed into some separate category in people’s minds?

Will I be othered because I use it?

Those aren’t abstract concerns about disability representation. They’re the kind of thoughts that can run through your head when you’re deciding whether to bring the tool that you know would make an outing easier.

I’ve worried about standing up after sitting on my rollator and having someone decide that if I can stand, I obviously didn’t need it in the first place.

I’ve had similar feelings about using a cane.

There is a tremendous amount of social baggage attached to mobility aids, particularly for young people and ambulatory users.

But here’s the nefarious thing my rollator does: It lets me go places.

That’s it.

That’s the agenda.

Sometimes I can walk.

Sometimes I can stand.

Neither of those facts tells you how long I can walk or stand, what happens to my body while I do it, how much recovery I’ll need afterward, or whether spending my limited physical capacity walking through a building means I have nothing left for the reason I entered the building in the first place.

My rollator gives me another option.

So does a cane.

So does a wheelchair.

So does a shower chair.

So does a collapsible stool.

These aren’t declarations that someone has surrendered to sickness.

They’re tools.

And calling them “accessories” is particularly revealing because sometimes the thing making someone’s disability visible to you is the exact thing making it possible for them to be visible at all.

Take away the wheelchair and maybe you don’t see that person at the museum.

Take away the rollator and maybe you don’t see me at the store.

Take away the shower chair and maybe somebody needs another person to help them bathe.

Congratulations.

You haven’t cured anybody. You’ve just put them back in the house.

Maybe we’re seeing more mobility aids because people are less ashamed to use them.

There is another explanation for why disability may look more common now.

People learn from each other.

Imagine someone who can technically walk but can’t walk very far without significant pain, dizziness, fatigue or other symptoms.

They’ve never considered a wheelchair.

After all, wheelchairs are for people who can’t walk. Right?

Then they see an ambulatory wheelchair user online. This person stands up. Maybe they walk short distances. Maybe they explain why they use their chair. And suddenly our hypothetical person learns something:

Wait. You can do that?

Maybe they try one. And for the first time in years, they go to a museum.

Someone else sees a young person using a rollator. Wait. I’m allowed to use one of those?

They try it. Now they’re at the mall.

Another person learns that a cane doesn’t require some official threshold of suffering before they’re permitted to touch one.

Now they’re going to class.

From the outside, someone can look around and say:

My Gosh! There are mobility aids everywhere now. Disability must be trendy.

The people using them might be thinking:

OMG. I can leave my house.

Visibility creates permission.

Permission creates access.

And access creates more visibility.

That’s not necessarily social contagion. Sometimes it’s just information traveling between human beings.

Britain has actually seen performative disability before.

And because this article appeared in a British newspaper, history has provided us with an almost comically perfect comparison.

Alexandra of Denmark, later Queen Alexandra, developed a permanent limp after a serious illness in 1867. Alexandra was also enormously fashionable. And people began copying her.

The phenomenon became known as the “Alexandra limp.” Fashionable women deliberately altered their gait to resemble hers, with historical accounts describing women using canes and even uneven footwear to manufacture the effect.

Now that is performative disability.

A nondisabled person deliberately mimicking an impairment because an influential royal has made the appearance fashionable is fundamentally different from:

“I saw another disabled person using this tool, realized it could help me, tried it, and discovered that I could participate in more of my life.”

One imitates disability for social cachet.

The other uses an adaptive tool because it improves function.

Those aren’t remotely the same phenomenon. And more than 150 years later, I’d have hoped that we’ve progressed enough to understand the difference. The Telegraph sadly proved disappointing. 

We also need to talk about the fact that so many of these suspicious patients are women.

There is another thread running through this entire conversation that should make us deeply uncomfortable.

Young women.

Women with complicated symptoms.

Women with conditions that aren’t always immediately visible.

Women who say they’ve been dismissed by doctors.

Women who talk to one another about symptoms.

Women who search for explanations.

Women who arrive at appointments having researched what might be wrong with them.

Women who want evidence that what they’re experiencing is physically real.

And somehow, once again, we’re discussing whether women may have been socially influenced into believing themselves sick.

That should set off some historical alarm bells.

Women’s symptoms have an extraordinarily long history of being psychologized, minimized and attributed to emotional instability or suggestibility. And modern medicine isn’t as far removed from serious sex disparities in research as we sometimes like to imagine.

In the UK, efforts to close that gap are still evolving, even today there is no single blanket statutory requirement that every UK medical study include women or analyze its results separately by sex.

Here in the United States, women, particularly women of childbearing potential, were systematically excluded or severely underrepresented in significant areas of clinical research for years. In 1993, the NIH Revitalization Act made inclusion of women and minorities in NIH-funded clinical research a matter of federal law. Now, as recently as 2016, the NIH expanded requirements, directing researchers to account for biological sex differences as a biological variable in their studies. 

2016.

That is not ancient history.

I’m not arguing that medicine knows nothing about women’s bodies or that every disputed diagnosis is correct. I’m saying something much less dramatic:

Medicine is still learning things.

And perhaps we should maintain some intellectual humility about conditions disproportionately diagnosed in women before deciding that their increasing visibility is best explained by women being particularly susceptible to illness trends on TikTok.

And how exactly is medicine supposed to learn if patients don’t talk?

There’s something else profoundly strange about treating communities of people discussing similar symptoms as inherently suspicious.

How exactly do we think medical knowledge develops?

People experience things.

They describe those things.

Other people say: Wait. Me too.

Patterns emerge.

Patients bring those patterns to doctors.

Clinicians notice that they’re seeing the same constellation of symptoms repeatedly.

Researchers ask questions.

Studies get designed.

Hypotheses get tested.

Some ideas turn out to be wrong.

Others become the beginning of entirely new areas of medicine.

Patient communities aren’t substitutes for controlled research, and TikTok isn’t a medical journal. But people talking to each other about what is happening inside their bodies is not inherently anti-scientific. It can be one of the things that tells science where questions exist.

If everyone experiencing a strange collection of symptoms sits quietly at home because talking about illness publicly might look like attention-seeking, how are patterns supposed to become visible?

If patients are discouraged from comparing experiences, how do unusual clusters get noticed?

If everyone who says, “Something is happening to me and I don’t understand it,” is treated as suspect for finding other people saying the same thing, what exactly are physicians and researchers supposed to investigate?

Medical progress requires data. And before something becomes data, very often someone has to say that it’s happening.

Of course patient communities can get things wrong.

So can individual doctors.

So can researchers.

That’s why we investigate. The answer to uncertainty is not silence. It’s better research.

So if the complaint is that people with similar symptoms are finding one another, talking publicly and asking medicine to investigate what they’re experiencing, I have to ask: What would you prefer?

That they stop talking?

That doctors stop hearing about it?

That researchers stop asking questions?

That medicine stop learning?

Because ultimately, if everyone with a poorly understood condition quietly withdraws from regular life and keeps their symptoms to themselves, we haven’t solved anything.

We’ve simply made the unanswered questions quieter.

And I don’t think silence should ever be confused with recovery.

Dynamic disability is still disability.

There’s another problem with judging disability by what someone appears capable of doing at a particular moment.

Bodies fluctuate.

Some disabilities are dynamic.

Someone can have a good Tuesday and a catastrophic Thursday.

Someone can walk through a store today and need a mobility aid tomorrow.

Someone can use a wheelchair through an airport and stand up at the gate.

Someone can improve significantly with treatment while remaining disabled.

Someone can experience remission.

Someone else may never fully recover.

None of those people has committed fraud by changing.

And that is why I fundamentally reject the idea that the appropriate alternative to a “sickness identity” must be a “recovery identity.”

Of course I want improvement.

Give me physical therapy.

Give me medication.

Give me pain management.

Give me rehabilitation.

Give me research.

Give me treatments we haven’t invented yet.

Give me every evidence-based tool available to help me expand what my body can do.

But recovery is not a moral virtue. And remaining disabled is not a character defect.

There’s another identity available to us: A life identity.

I don’t have to choose between accepting my body as it exists today and hoping it functions differently tomorrow.

I can do both.

I can adapt without surrendering.

I can pursue treatment without making eventual nondisabledness a prerequisite for happiness.

I can build a life around the body I actually have instead of keeping my real life in storage for the body I hope to have someday.

Disability isn’t an adversity I owe you an inspiring victory over.

Another telling idea in the article is the concern that disability is increasingly seen not as “an adversity to overcome, but as something society should accommodate.” Those things aren’t opposites.

A ramp doesn’t discourage rehabilitation.

A wheelchair doesn’t prevent an ambulatory user from walking when they’re able.

A shower chair doesn’t convince someone’s legs to stop functioning.

Accommodations aren’t whispering seductively in the night: Have you considered becoming more disabled?

They make things accessible now.

Not when I’m cured.

Not when I’ve completed an inspirational recovery montage.

Now.

Because my life is happening now and I’d very much like to be there for it.

So, which is it? Do you want us invisible, or economically productive?

And now we arrive at the financial part of this conversation. Because concern about rising disability rarely stops at cultural anxiety. Eventually we get to economic inactivity.

Too many working-age people aren’t working.

Too many people are receiving benefits.

Long-term illness is expensive.

What is all of this costing taxpayers?

Okay. Then what, precisely, would you like disabled people to do?

Because the same accommodations and adaptive tools that supposedly make disability too visible can also be the infrastructure that allows someone to participate economically.

A wheelchair can get someone into a museum, where they buy a ticket.

A rollator can get someone through a shopping center.

A cane can get someone to class.

Remote work can turn someone who cannot reliably commute into someone who can reliably perform a job.

Flexible scheduling can keep someone with a fluctuating condition employed.

Educational accommodations can allow someone whose previous career is no longer physically sustainable to retrain for one that is.

Accessibility costs money sometimes. So does inaccessibility.

There is a difference between capability and capacity.

This isn’t theoretical for me. I’ve spent the last several years working in business. I haven’t suddenly lost my intelligence. I haven’t forgotten how to communicate. I haven’t lost my education, professional skills, creativity, ambition or desire to contribute. There are plenty of individual work tasks I am perfectly capable of performing.

What I can no longer reliably promise is that my body will perform them for forty hours every week, according to somebody else’s schedule. That’s different.

Capability is not capacity.

I can have a stretch where I function remarkably well.

I can push.

I can accomplish a tremendous amount. And then my body can collect the bill.

Pain.

A joint that decides it would rather not remain where anatomy intended.

A migraine.

An illness made more complicated by medications that alter immune function.

A flare that requires substantially more recovery time than a conventional employer can reasonably accommodate every few weeks.

Even collapsing unconscious on the office floor as I have done a number of times.

And I actually understand the employer’s side of that equation. A business needs employees who can reliably perform the jobs they’re hired to do. I’m not angry at the basic reality that businesses need work to get done.

But here’s where the equation gets strange: Employers can also be remarkably resistant to accommodations that might make continued employment possible.

I experienced that myself while working for a healthcare organization. Because at the end of the day, a healthcare organization, even a nonprofit one, is still an employer operating a business.

Eventually, some disabled people end up at home asking themselves: Okay. What can I do now?

That question isn’t surrender. Sometimes it’s the beginning of adaptation.

Some of us are trying to build another way back.

Disabled people answer that question in all kinds of ways.

Some volunteer.

Some make things.

Some become advocates.

Some start businesses.

Some make videos.

Some become influencers.

Some build online communities.

Some write blogs because they want another person sitting alone in their house wondering what the hell happened to their life to feel a little less alone. (Hello. Welcome to Forbidden Salt.)

Some people retrain.

That’s something I’m considering. The career I built is no longer compatible with what my body can reliably sustain. So I’m looking at another possibility: going back to school and eventually working in a field like therapy or social work.

That kind of work could potentially be more physically sustainable for me. It could offer more control over my hours. It’s sedentary. It uses abilities I still possess. And it would allow me to take experiences that have profoundly changed my life and perhaps use them to help somebody else.

There’s just one problem: I can’t wake up tomorrow and declare myself a therapist.

I need an education. And education requires access.

Maybe I need a rollator to navigate campus.

Maybe I need hybrid or remote coursework.

Maybe I need attendance flexibility.

Maybe I need accommodations if a neurological condition inconveniently decides that exam day is an excellent day for a migraine.

Maybe it takes me longer than it takes someone else.

Those accommodations don’t trap me in disability. They’re the bridge between a career my body can no longer sustain and one it potentially can.Take away the bridge because you’re worried accommodations encourage a “sickness identity,” and don’t act surprised when I’m still standing on the other side.

And employment is not the measure of a human being’s worth.

I want to be extremely careful here, because there’s an ugly conclusion waiting on the other side if we’re not.

Not every disabled person can work.

Not everyone will eventually leave disability benefits.

Not everyone can retrain.

Not everybody’s condition will improve.

Some people will need significant public assistance for the rest of their lives.

They are not failed economic units.

A person’s right to housing, food, healthcare, dignity, relationships and participation in society cannot depend entirely upon their ability to produce enough economic value to purchase those things.

Disability benefits exist because disability is one of the things human bodies do.

It can happen at birth.

It can happen gradually.

It can happen after an infection.

It can happen in an accident.

It can happen to someone who did absolutely everything “right.”

It can even happen to you.

That’s one reason societies build social safety nets in the first place.

But if economic participation truly is the concern, then the obvious question should be:

How do we remove barriers for disabled people who can and want to participate?

Not:

Why are there suddenly so many disabled people where I can see them?

We participate in the economy outside of employment, too.

There is also something bizarre about reducing economic participation entirely to whether someone currently receives a paycheck.

When my mobility aid gets me out of my house, I participate in my community.

I buy the museum ticket.

I see the movie.

I order dinner.

I pay for a class.

I buy something from a local shop.

I travel when my body allows it.

I pay artists.

I make things.

I hire people.

I buy an absurd little object that brings me joy and absolutely did not need to exist.

I participate in an economy considerably larger than somebody’s payroll.

And yes, I can order things from home. Amazon will certainly survive my disability. But is that the society we’re proposing?

Disabled people safely tucked away inside, consuming things through a screen, while everyone else gets the restaurants and theaters and parks and museums and classrooms?

No, thank you. I want to be there too.

Mobility aids are bridges.

That’s what bothers me most about calling them “accessories.” A bridge doesn’t determine where someone ultimately goes. It simply makes somewhere previously inaccessible reachable.

My rollator doesn’t tell me I’m sick. My body already did that.

My rollator asks a considerably more useful question: Okay. Where would you like to go anyway?

Maybe today it’s the grocery store.

Maybe tomorrow it’s a museum.

Maybe eventually it’s a university.

Maybe education leads to another career.

Maybe that career means I need less public assistance.

Maybe it doesn’t.

Maybe my health changes again and I need more.

Dynamic disability doesn’t offer a tidy progression from sick to recovered to economically productive, preferably before the credits roll.

Human bodies are messier than that.

But every time accessibility gives somebody another choice, their world gets bigger.

You don’t get to demand proof and then call the proof performative.

People with invisible illnesses are handed an impossible assignment.

If you cannot see my disability: You don’t look sick.

If I use equipment that makes it visible: Why are you making illness your identity?

If I don’t talk about it: Nobody knew you were struggling.

If I do: You’re a “sickfluencer.”

If I stay home: That’s what genuinely sick people do.

If accommodations allow me to leave: You don’t seem very disabled.

If I can’t work: Why should taxpayers support you?

If I use accommodations to pursue education, work, travel or community life: Why does everybody suddenly need special treatment?

What exactly is the winning move here?

Because increasingly, it seems like the acceptable disabled person is one whose disability is severe enough to inspire sympathy but unobtrusive enough not to inconvenience anybody.

Preferably temporary.

Ideally inspirational.

And certainly not too visible.

I’m no longer interested in playing that game.We were never supposed to disappear.

There are serious conversations worth having about disability, medicine and the internet.

Let’s talk about medical misinformation.

Let’s talk about poor-quality research.

Let’s talk about diagnostic uncertainty.

Let’s talk about unscrupulous providers.

Let’s talk about influencers selling miracle cures.

Let’s talk about algorithms that can turn three videos about dizziness into an entire feed convincing someone they have seventeen diseases before breakfast.

Those conversations matter.

We don’t have to turn chronically ill young women into a cultural pathology in order to have them.

And we certainly don’t need to romanticize the version of chronic illness where people quietly “withdraw from regular life.”

Because I refuse that premise.

Maybe you’re seeing more disabled people because someone saw another person use a cane and finally stopped being ashamed of needing one.

Maybe someone discovered ambulatory wheelchair users exist and realized a wheelchair could give them their favorite museum back.

Maybe someone got a shower chair and discovered that sitting down meant they could dance in the shower again.

Maybe somebody asked for remote work and stayed employed another year.

Maybe someone asked for accommodations at university and graduated.

Maybe patients with the same strange symptoms found each other and finally realized they weren’t the only ones.

Maybe they took those questions to their doctors.

Maybe a researcher listened.

Maybe what looks from the outside like a group of people “identifying” with an illness is also, sometimes, the beginning of medicine figuring something out.

Maybe a chronically ill creator showed somebody else a bridge back into a part of their life they’d thought was gone forever.

And maybe, when enough people cross those bridges, disability becomes more visible.

Good.

You’ll see canes.

You’ll see rollators.

You’ll see wheelchairs occupied by people who occasionally stand.

You’ll see disabled students.

Disabled employees.

Disabled business owners.

Disabled artists.

Disabled tourists.

Disabled shoppers.

Disabled people dancing from chairs.

Disabled people making jokes.

Disabled people dressing beautifully.

Disabled people complaining when this fucking sucks.

Disabled people having genuinely wonderful days without those days retroactively invalidating the terrible ones.

Disabled people asking questions medicine hasn’t answered yet.

Disabled people living ordinary, messy, interesting lives.

You know what all those people have in common?

They didn’t withdraw from regular life. They found a way back into it.

The goal of accessibility is not to make disability disappear from public view. It’s to make sure disabled people don’t.

Disability didn’t become cool.

Disabled people just stopped agreeing to disappear.