Who Is Expected to Bend? When Accessibility Only Goes One Way

“It Works for Most People”

Over the past several months, I have heard some variation of the same explanation repeatedly while trying to address problems with my case management through BJC Behavioral Health: most people.

Most clients have open availability.

Most people enjoy meeting at Starbucks.

This is how things normally work.

The implication seems to be that if a system works for most people, the problem must lie somewhere with the person who cannot comfortably function within it.

But I've started wondering about something more fundamental: how do we actually know it works for most people?

Who are “most people”?
Did someone ask them?
Did they know other options were available?
Did they feel safe saying that something wasn't working?
Or did they simply comply because they believed they were supposed to?

Those questions matter because silence and satisfaction are not the same thing.

A person can complete an appointment while finding the process exhausting.

They can answer a phone call even though written communication would have been substantially easier.

They can show up somewhere inconvenient because nobody told them they could ask for something different.

They can follow confusing instructions, tolerate an uncomfortable environment, or push themselves beyond their capacity because they assume that's just the way things are.

From the organization's perspective, the process worked.

From the person's perspective, they survived it.

Those are very different measures of success.

And this question has become increasingly difficult for me to ignore because my experience with BJC did not end when I filed a grievance.

After my Easterseals family navigator attended the grievance meeting with me, she was deeply troubled by how my concerns were handled.

After years of highly recommending BJC, she told me she no longer felt comfortable recommending them.

A social worker supporting me through the St. Louis Arc advised me to leave BJC.

A friend urged me to consult an attorney.

And a disability advocate/resource professional familiar with what has been happening strongly encouraged me to file a disability-discrimination complaint with the U.S. Department of Health and Human Services Office for Civil Rights.

These people have different relationships with me, different professional backgrounds, and different perspectives.

Their reactions don't by themselves establish a legal conclusion about what BJC did.

But they have made it increasingly difficult for me to accept the idea that the fundamental problem was simply that I was unusually difficult to accommodate within a system that otherwise works perfectly well.

And maybe that's the bigger question.

When an organization says something works for “most people,” are they measuring accessibility?

Or are they measuring compliance?

Because people—disabled and nondisabled alike—can become remarkably good at enduring systems that aren't working for them.

We learn not to complain.

We learn not to inconvenience anyone.

We learn that this is simply how school works, how employment works, how healthcare works, how social services work, how adulthood works.

Sometimes an autistic or otherwise neurodivergent person is simply the person who finally says: “But why does it have to work this way?”

That question isn't evidence that the person is the problem.

Sometimes it's the question that reveals a problem everyone else has been taught to live with.

When the People Around You Start Saying, “This Isn’t Okay”

One of the difficult things about repeatedly struggling with a system is that eventually, you can start questioning your own perception of what is happening.

Am I expecting too much?
Am I being too sensitive?
Is this actually a serious problem, or am I simply struggling more than everyone else seems to?

Those questions become especially complicated when you're autistic and have spent much of your life being taught—directly or indirectly—that your needs are unusual, inconvenient, excessive, or something you should learn to tolerate quietly.

That is part of why I wanted my Easterseals family navigator beside me during my grievance meeting with BJC.

I wanted another person in the room.

Someone who understood disability and autism.

Someone who had witnessed parts of what had been happening.

Someone who could listen to the same explanations I was hearing and help me make sense of them afterward.

And afterward, she was upset, too.

This wasn't someone who had entered the situation already believing BJC was terrible; quite the opposite: she had recommended BJC highly for years.

After witnessing how my grievance was handled, however, she told me she no longer felt comfortable recommending them.

That mattered to me.

Not because another person's reaction automatically proves that my interpretation is correct, and certainly not because it establishes whether something legally constitutes discrimination.

It mattered because someone with experience helping disabled people had entered that room with her own perspective, listened to what was said, and came away deeply concerned by what she witnessed.

And she isn't the only person who has been concerned.

A social worker supporting me through the St. Louis Arc has advised me to leave BJC.

A friend told me the situation had become serious enough that I should speak with an attorney.

A disability advocate and resource professional who learned about what had been happening strongly encouraged me to file a disability-discrimination complaint with the U.S. Department of Health and Human Services Office for Civil Rights.

My therapist has also witnessed what this process has done to my functioning over time.

These people don't all occupy the same role; they don't have identical knowledge of every interaction, and I don't want to present their reactions as though they do.

But there is something unsettling about repeatedly explaining an experience to people outside the system and watching them become alarmed while the system itself continues explaining why its behavior was reasonable.

At some point, that contrast deserves examination.

Because accountability isn't supposed to mean convincing the person who was harmed that there was a perfectly understandable reason for everything that happened.

Sometimes the appropriate response is: we can see how our process failed you; what do we need to change?

That was what I hoped the grievance process would accomplish.

I wasn't expecting everyone involved to agree with every interpretation I had made.

I wasn't expecting perfection.

And I wasn't asking BJC to become an autism-specialist organization overnight.

I wanted them to become curious about the gap between what they believed they were providing and what I was actually experiencing.

Instead, I kept encountering explanations rooted in what staff were accustomed to: what most clients supposedly needed, what most clients supposedly preferred, and how things were normally done.

And that brings me back to the question underneath all of this: when a disabled person tells a system, “This isn't working for me,” whose job is it to change?

Too often, the answer seems to be: the disabled person.

And that problem extends far beyond BJC.

Who Is Expected to Bend?

While thinking about everything that happened with BJC, I watched a conversation between autistic advocate Orion Kelly and autistic clinical psychologist Dr. Daniel Wendler about neurodivergence and employment.

They were talking about workplaces, but one part immediately felt much bigger than employment.

Kelly described a familiar imbalance: everything gets placed on the autistic person to change, bend, and mold themselves around the existing environment.

He wasn't arguing that employers should do all the adapting instead.

He was asking what happens when both sides actually meet somewhere in the middle.

That distinction matters.

Because I sometimes think discussions about disability accommodations get framed as though there are only two possibilities.

Either the disabled person adapts to the existing system exactly as it is, or everyone else must completely rearrange themselves around the disabled person.

But there is an enormous amount of space between those extremes.

What if we simply talked to each other?

What if a disabled person could say: “This part of the process creates a barrier for me,” and the response wasn't immediately: “Well, this is how we normally do it”?

What if the next question were: “Okay. What might work better?”

That doesn't mean every requested accommodation will always be possible; it doesn't mean disabled people never have to compromise, tolerate discomfort, learn new skills, or work within legitimate constraints.

We already do those things.

Constantly.

The problem is what happens when adaptation is treated as a one-way obligation.

The workplace was built around neurotypical expectations, so the autistic employee must learn to behave more neurotypically.

The classroom was designed around one way of learning, so the neurodivergent student must figure out how to learn that way.

The healthcare system relies heavily on phone calls, so the person who struggles to process spoken information must become better at phone calls.

The social-service system schedules appointments according to its own workflow, so the person seeking help must rearrange their life around it.

The environment is overwhelming, so the overwhelmed person must become better at tolerating overwhelm.

Again and again, the existing system becomes the immovable object.

The human being is expected to bend.

And sometimes we call that independence.

Sometimes we call it resilience.

Sometimes we call it professionalism, compliance, treatment participation, social skills, or learning to function in the “real world.”

But I think we should be much more willing to ask: why is the system automatically assumed to be the part that shouldn't change?

That question became especially important to me after my experience with BJC.

I wasn't asking BJC to eliminate verbal communication from case management; I had already participated in a lengthy phone intake, an in-person intake, and an in-person meeting with my case manager.

I was saying something much more ordinary:

Written communication helps me process information.
Please check my availability before scheduling appointments.
Please communicate changes clearly.
Please allow the support person I authorized to help me navigate this.
Please understand that chronic autistic burnout changes how much I can currently carry.

None of those things required BJC to become an entirely different organization.

They required some movement, and I was willing to move, too.

That's the part I think gets lost when disability accommodations are treated as burdens imposed upon everyone else.

Meeting in the middle requires two directions of travel.

If the autistic person is constantly learning neurotypical communication, tolerating neurotypical environments, navigating neurotypical institutions, suppressing autistic responses, explaining autistic needs, anticipating neurotypical expectations, and recovering from the consequences when they cannot keep doing all of that, while the people on the other side are unwilling to alter even relatively small parts of their approach, that isn't meeting in the middle.

At some point, that starts looking less like meeting in the middle and more like assimilation with a nicer name; this pattern isn't limited to autism.

Disabled people are constantly asked to prove that a barrier is sufficiently disabling before anyone considers changing it.

People with different communication needs, sensory needs, mobility needs, cognitive needs, energy limitations, processing differences, or mental-health needs can encounter systems designed around an imagined “normal” person—and then be treated as the complication when their bodies or brains don't cooperate with that design.

But human variation isn't an exception to society.

Human variation is society.

Maybe accessibility shouldn't begin with asking: “How do we get this person to function more successfully within the system we've already built?”

Maybe sometimes it should begin further upstream: “Why did we build the system this way in the first place—and which of these barriers actually need to be here?”

The Invisible Bag of Bricks

One of the hardest things about invisible disability is that other people can see the task without seeing what the task costs.

In his conversation with Orion Kelly, Dr. Daniel Wendler uses a simple analogy: if someone cannot move an impossibly heavy bag of bricks, we wouldn't ordinarily conclude that they're lazy.

We would recognize that the weight of the bag matters.

But many of the barriers neurodivergent and disabled people encounter are invisible.

So instead, we hear:

It's just a phone call.
It's just an appointment.
It's just a change of plans.
It's just a drive.
It's just an email.
It's just one more thing.

And sometimes it really is a small thing—for the person saying it, but that doesn't mean it is small for the person being asked to do it.

Imagine that every person is carrying a bag.

One person's bag might contain ten pounds.

Another person's might contain fifty.

Someone else's might already be straining at the seams.

Then we add another brick.

From the outside, we're looking only at the brick.

The person carrying it feels the entire bag.

That distinction has become painfully relevant during chronic autistic burnout.

A phone call isn't simply the number of minutes I spend speaking to someone; it can require preparing myself beforehand, processing spoken information quickly enough to respond, trying to remember what was said afterward, recovering from the interaction, and managing whatever other demands were displaced by the energy I spent on it.

An unexpected appointment isn't simply another square on a calendar; it can affect work, income, transportation, existing appointments, recovery time, executive functioning, and everything else that was carefully arranged around the limited capacity I had available.

A last-minute change isn't simply a new time or location.

Sometimes it means rebuilding the entire mental structure I was relying on to get through the day.

None of this means I can never make a phone call, attend an appointment, drive somewhere, tolerate a change, or do something difficult.

That's an important distinction.

Being capable of doing something is not the same as being able to do it repeatedly without consequence.

And I think our culture struggles enormously with that idea.

If someone manages to do something once, we assume they can always do it.
If they manage to keep working, we assume work isn't hurting them.
If they continue showing up, we assume they aren't overwhelmed.
If they haven't collapsed yet, we assume the load must be manageable.

But endurance is not the same thing as wellness.

That applies far beyond autism.

I once encountered essentially this reasoning when I tried to explain burnout at a resource center: everyone is burned out.

I've kept thinking about that.

Because maybe the appropriate conclusion isn't: “Everyone is burned out, so you should be able to handle it, too.”

Maybe the appropriate question is: “Why is everyone burned out?”

If enormous numbers of people are exhausted, stressed, overworked, financially strained, disconnected, or barely keeping up with the demands placed upon them, their ability to continue functioning doesn't necessarily prove that our systems are working well.

Maybe it tells us how thoroughly we've normalized struggling.

People learn to work through exhaustion.

They come to work sick.

They answer messages when they need rest.

They accept inconvenient appointments.

They apologize for having needs.

They push through pain.

They learn which complaints will be dismissed and eventually stop making them.

And from the outside, all of that can look remarkably like a functioning system.

That's why I'm increasingly uncomfortable with the idea that accessibility should be judged by whether other people can tolerate the same demand.

“Everyone else carries it” doesn't tell us how heavy their bags are, either.

Some people may genuinely have greater capacity for a particular demand.

Some may have fewer barriers.

Some may have support we cannot see.

Some may be struggling quietly.

And some may have spent their entire lives believing they aren't allowed to put the bag down.

Disability adds another dimension to this because equality cannot simply mean adding the same brick to everyone's bag and declaring the treatment fair.

Sometimes equitable support means recognizing that the bags aren't equally heavy to begin with.

Sometimes it means removing an unnecessary brick.

Sometimes it means finding another way to carry it.

And sometimes the most compassionate—and practical—thing anyone can do is stop arguing about whether the brick should be heavy and believe the person who is telling you: “I cannot keep carrying this much.”

Accommodation Isn’t Special Treatment

Whenever disability accommodations enter a conversation, there seems to be an underlying fear that someone is getting something extra.

An easier version.

A shortcut.

Preferential treatment.

Something everyone else had to endure while the disabled person gets to avoid it.

But that misunderstands what an accommodation is supposed to accomplish.

An accommodation doesn't necessarily remove the responsibility.

It removes—or reduces—a barrier that isn't necessary to the responsibility.

If someone cannot physically enter a building because the only entrance has stairs, a ramp isn't an unfair advantage over the people who can use the stairs.

If someone has difficulty processing spoken information, providing important information in writing doesn't give them an unfair advantage over someone who processes speech easily.

If an autistic person needs additional processing time, giving them that time isn't doing the processing for them.

The person still has to participate.

They still have to do the work.

They still have responsibilities.

They just don't have to spend as much of their limited capacity fighting an unnecessary obstacle before they can even begin.

Dr. Daniel Wendler gives a wonderfully ordinary example of this in his conversation with Orion Kelly.

He describes having fine-motor difficulties related to his autism and being allowed by a college professor to type essays on a laptop while other students wrote theirs by hand.

He also describes other adaptations and supportive people throughout his education and career that helped him access opportunities and use his abilities.

The laptop didn't write the essay.

It didn't make him smarter.

It didn't lower the academic expectations.

It changed the method of accessing the task.

That distinction seems incredibly obvious when we talk about some disabilities, yet remarkably controversial when the barrier involves communication, sensory processing, executive functioning, energy, predictability, or other things people cannot easily see.

Written communication has been one of those things for me.

When I tell someone that I process complex information substantially better in writing, I am not asking them to absolve me of communicating.

I'm telling them how I can communicate more effectively.

I can reread written information.

I can process it at my own pace.

I can make sure I understand what someone actually said instead of trying to retain everything while simultaneously processing speech and formulating a response.

I can organize my thoughts before answering.

And there is a record both people can reference later if something becomes confusing.

Those things don't remove communication.

They improve it.

That's why I find it strange when accommodations are discussed primarily in terms of what everyone else has to give up.

What if we asked instead: what is the actual goal here?

If the goal is effective communication, shouldn't we want the method that helps the people involved understand one another?
If the goal is successful case management, shouldn't we want scheduling practices that make it more likely the client can actually attend?
If the goal is healthcare, shouldn't we want patients to understand information about their care?
If the goal is employment, shouldn't we care primarily whether someone can successfully perform the meaningful functions of their job?

Sometimes we've become so attached to how something has traditionally been done that the method quietly replaces the purpose.

Then someone asks for another method and it sounds like they're asking us to lower the standard.

But maybe they aren't asking to lower it at all.

Maybe they're asking us to stop measuring something irrelevant.

Accessibility Usually Helps More Than the Person Who Asked for It

One of the strangest things about accessibility is how often we treat it as something created for a small group of exceptional people.

But look around.

Curb cuts were designed with wheelchair access in mind, but they're also useful for parents pushing strollers, travelers pulling luggage, delivery workers moving carts, people using walkers, someone temporarily on crutches, and countless other people moving through the world.

Captions can provide access for Deaf and hard-of-hearing people, but they're also useful when someone can't hear a video, is learning a language, is processing unfamiliar information, or simply understands something better when they can read it.

The same principle applies to less visible forms of accessibility:

Clear instructions
Predictable processes
Advance notice of changes
Multiple ways to communicate
Checking someone's availability before scheduling them
Information people can return to later
Quiet spaces
Flexibility where flexibility is actually possible

None of those things become less useful because a disabled person was the one who first needed them.

In fact, sometimes disability exposes a design problem that everyone else has simply learned to work around.

That matters because I keep thinking about the phrase I heard elsewhere while trying to explain burnout: everyone is burned out.

If that's true—or even partly true—then perhaps the lesson shouldn't be that disabled people need to become better at tolerating the same conditions everyone else tolerates.

Maybe we should become more curious about the conditions.

What if the employee asking for clearer expectations isn't the only employee confused by vague instructions?
What if the autistic patient asking for written information isn't the only patient who forgets half of what was discussed during an appointment?
What if the person asking for advance notice isn't the only person stressed by last-minute changes?
What if the client struggling with an unnecessarily complicated process isn't the only person struggling with it?

The difference may simply be that one person's disability makes the friction impossible to ignore.

Other people may be able to absorb it.

They may have more capacity available.

They may have developed workarounds.

They may complain privately.

They may assume there isn't another option.

Or they may simply have learned that being a cooperative employee, patient, student, client, or adult means not questioning the way things are done.

That's why I don't think tolerance is a particularly good measure of accessibility.

People can tolerate remarkably bad design.

We do it every day.

And sometimes when someone finally asks, “Could we do this differently?”, the answer reveals how arbitrary the barrier was in the first place.

Maybe the appointment didn't actually need to be scheduled without asking.
Maybe the information didn't actually need to be delivered only verbally.
Maybe the instructions didn't actually need to be vague.
Maybe the environment didn't actually need to be so overwhelming.
Maybe the rule everyone was bending themselves around wasn't essential to the goal at all.

Dr. Daniel Wendler makes a related point when discussing neuroinclusive workplaces with Orion Kelly: changing environments so neurodivergent people can contribute isn't necessarily a loss for everyone else.

The broader organization can become stronger when it stops unnecessarily excluding people whose abilities and perspectives differ from the assumed norm.

That's a fundamentally different way of thinking about accessibility.

Instead of asking: “How much do we have to change for this person?”

We could also ask: “What might we learn about our system because this person encountered a barrier?”

That doesn't mean every individual preference should become universal policy. It doesn't mean every barrier can disappear.

It means we stop treating accessibility as an unfortunate exception to otherwise good design.

Sometimes accessibility is better design.

And maybe the people who cannot quietly tolerate our systems aren't inconveniences standing in the way of efficiency.

Maybe they're showing us where those systems could become more humane for everyone.

What Happens When the System That Is Supposed to Help Becomes Another Barrier?

There is something particularly painful about struggling with an inaccessible system when the purpose of that system is supposedly to help you struggle less.

I sought case management because I was already overwhelmed.

I was dealing with chronic autistic burnout, unstable housing, limited resources, financial stress, appointments, applications, work, and the ordinary responsibilities of keeping myself alive and functioning while having practically no capacity left.

Case management was supposed to help me navigate some of that.

Instead, case management became another thing I had to navigate.

I had to correct scheduling problems.

I had to explain that appointments had been made without checking whether I was available.

I had to explain that morning appointments interfered with work.

I had to repeatedly explain that I had already applied for disability benefits when an appointment was being arranged to help me apply again.

I had to explain my communication needs.

Then explain them again.

I had to ask for a supervisor.

When I couldn't get the supervisor information I requested, my family navigator and I had to obtain it elsewhere.

Then we had to do the same thing with the supervisor's supervisor.

I had to escalate concerns.

Document what happened.

Write emails.

Gather records.

Send a letter from my therapist explaining my autism-related accommodation needs.

Attend a grievance meeting.

And then process and respond to what happened in that meeting.

At some point, I realized something: I was doing an extraordinary amount of case management in order to manage my case management.

That is the contradiction I cannot get past.

The person asking for support may already be the person with the least capacity available to fight for access to it.

Yet when a helping system isn't accessible, that person can become responsible for identifying the problem, explaining the disability, proposing solutions, following up when nobody responds, correcting errors, finding the appropriate supervisor, learning the grievance process, collecting evidence, recruiting advocates, and escalating the complaint.

And every additional failure creates another task.

The appointment made without consulting you becomes an email you have to write.

The confusing communication becomes something you have to clarify.

The unanswered accommodation request becomes something you have to follow up on.

The unsuccessful attempt to resolve the problem becomes a grievance.

The unsuccessful grievance process may become an external complaint.

The barrier creates work. Trying to remove the barrier creates more work.

For someone already in burnout, that cycle can become devastating.

And this is where “just advocate for yourself” starts sounding painfully inadequate.

Self-advocacy is important; learning what you need and communicating it can be empowering.

But self-advocacy requires capacity.

It requires language.

It requires executive functioning.

It requires understanding the system well enough to know when something has gone wrong and what you're allowed to ask for instead.

It often requires tolerating conflict, uncertainty, rejection, and the possibility that the people controlling access to something you need may perceive you differently after you complain.

Not everyone can do that, and even people who can do it cannot necessarily do it indefinitely.

I had help.

I had a therapist who could document my needs.

I had a Family Navigator who could attend meetings and advocate alongside me.

I had a social worker I could talk to.

I had people outside the situation telling me that what was happening concerned them.

And I can write.

That matters enormously.

Writing is one of the primary ways I make sense of complicated experiences; I can organize dates, preserve emails, compare what I was told at different times, research resources, and put what happened into words.

And even with all of that, this process has been exhausting.

So I keep wondering: what happens to the person who can't do what I did?

What happens to the autistic person who shuts down and stops responding?
The person who doesn't know accommodations exist?
The person who doesn't have an advocate?
The person who can't organize a timeline?
The person who assumes the professional must know better?
The person who has learned that speaking up only makes people angry?
The person who simply disappears from services because navigating the service became harder than going without it?

From inside an organization, that last person might look like a client who stopped engaging.

A missed appointment.

An unanswered message.

A closed case.

But silence doesn't necessarily mean the problem was solved.

Sometimes silence means the person ran out of capacity to keep telling you there was a problem.

And that should matter enormously in systems serving people who are already struggling.

A helping system cannot measure its accessibility only by the people who successfully navigate it.

It also has to wonder about the people who couldn't.

What About the People Who Don’t Speak Up?

There is an assumption buried underneath a lot of conversations about accessibility: if this were really a problem, more people would complain.

I'm not sure that's a safe assumption.

Because complaining is itself an act of access.

You have to recognize that something isn't working.
You have to know that something different might be possible.
You have to believe you're allowed to ask for it.
You have to figure out who to ask.
You have to find the words to explain the problem.
And then you have to believe that speaking up won't make things worse.

That's a lot of conditions.

Especially for people who may have spent years learning the opposite.

Many of us are taught very early what it means to be “good.”

Be cooperative
Don't make a scene
Don't be difficult
Respect authority
Follow the rules
Don't inconvenience other people
Be grateful for help
Try harder
Push through
Everyone else manages

Eventually, those messages can become so ordinary that we stop noticing them.

The good student doesn't challenge the teacher.
The good employee doesn't inconvenience the workplace.
The good patient follows instructions.
The good client cooperates with the service provider.
The good disabled person is grateful for whatever help is offered.

And somewhere along the way, “good” can start meaning “easy for the system to manage.”

That creates a serious problem when organizations use compliance as evidence that their processes are working.

Someone can dislike a process and still comply with it.
Someone can struggle enormously and never request an accommodation.
Someone can believe a rule is unreasonable and assume they aren't allowed to question it.
Someone can leave a service without ever filing a grievance.
Someone can spend years thinking: this is incredibly hard for me, but apparently everyone else can do it, so something must be wrong with me.

And sometimes people don't even know that another way is possible.

You cannot request an option you don't know exists.

You cannot identify an accommodation you've never heard of.

You cannot tell an organization that its process is unnecessarily inaccessible if you've spent your entire life believing you are the thing that needs fixing.

That is especially important when we talk about neurodivergence.

Autistic people are frequently expected to learn the unwritten rules of environments built around neurotypical expectations.

In their conversation, Orion Kelly and Dr. Daniel Wendler discuss this in relation to employment—including how concepts like “professionalism” can contain communication and social expectations that aren't necessarily relevant to whether someone can actually do the work.

They argue for greater directness and adjustment from everyone involved rather than requiring all of the adaptation from the autistic person.

But I don't think this phenomenon belongs exclusively to autistic people.

Conformity is powerful partly because it offers belonging.

Human beings learn what gets rewarded, what gets punished, what makes other people comfortable, and what makes us stand out.

Sometimes we adapt because adaptation is genuinely useful.

Sometimes we compromise because living alongside other people requires compromise.

But sometimes we comply because we don't realize we're allowed to ask why.

And that makes me wonder about the phrase that started this entire article: most people.

If most people aren't asking for something different, what does that actually tell us?

Maybe they're satisfied.

Some undoubtedly are.

But others may not know there is another option.

Some may not have the energy to complain.
Some may fear being labeled difficult.
Some may have complained somewhere the organization doesn't measure.
Some may have quietly left.
Some may have decided asking for help wasn't worth the additional stress.
Some may simply have accepted: that's just the way things are.

We can't look at those possibilities and automatically conclude that nobody's silence means satisfaction.

That's one reason my own experience has left me thinking so much about the people we never hear from.

I had professional support.

I had documentation.

I had people encouraging me to speak up.

I had the ability to research grievance procedures and disability resources.

I had the ability to put what happened into writing.

And even then, there were moments when I wanted to stop pursuing any of it because I was so exhausted.

Not because the concerns had disappeared.

Because pursuing them had become another source of exhaustion.

That distinction matters.

A person who stops complaining isn't necessarily a satisfied person.
A person who stops responding isn't necessarily a person whose needs have been met.
A person who leaves isn't necessarily evidence that they no longer needed the service.
A person who quietly complies isn't necessarily evidence that the process worked well.

Sometimes the absence of resistance means acceptance.

Sometimes it means resignation.

An accessible system has to be curious enough to know the difference.

These Aren’t Small Quality-of-Life Differences

There is a temptation to treat conversations about accessibility as though we're discussing preferences.

Phone call or email
This appointment time or that one
A quiet room or a noisy one
More notice or less notice
Direct communication or indirect communication

Looked at individually, some of these things can seem almost trivial, but I think that's part of the problem.

We keep looking at the individual brick instead of the weight of the entire bag.

The consequences of living in environments that repeatedly don't fit you can accumulate across a lifetime.

Autistic people experience significant health disparities, including substantially elevated mortality compared with the general population.

One large Australian study of 35,929 autistic people found a mortality rate just over twice that of the general population.

A later systematic review and meta-analysis, drawing on multiple studies and more than 150,000 autistic participants in its autism mortality analysis, similarly found significantly elevated all-cause mortality.

More recent population-level research continues to document the disparity.

That doesn't mean there is one simple explanation for why autistic people die younger.

There isn't.

Research points toward multiple overlapping factors, including epilepsy and other physical health conditions, co-occurring mental-health conditions, accidents and injuries, and other medical vulnerabilities.

Researchers have also documented substantial physical-health inequalities among autistic people, while emphasizing that important gaps remain in what we know.

So I don't want to take a complicated body of research and turn it into an easy claim that society treats autistic people badly, therefore autistic people die younger.

That would be more certainty than the evidence gives us.

But the disparities make another question much harder to ignore: if we already know this population is experiencing serious health inequities, why are we comfortable adding avoidable barriers to accessing help?

Why should someone already struggling with executive functioning have to navigate an unnecessarily complicated process?
Why should someone experiencing autistic burnout have to repeatedly prove that their capacity is limited?
Why should communication differences become another obstacle between someone and healthcare or support?
Why should asking for an accommodation generate so much additional work that pursuing the accommodation itself becomes exhausting?

These aren't abstract questions for me anymore.

I sought help during a period when my functioning was already severely strained. Instead of reducing that strain, the process repeatedly added to it.

And something else I've learned since then has made me question even more strongly how organizations determine whether a problem is isolated.

A case-management supervisor from another location told my family navigator and me that a number of people had been transferring—or trying to transfer—out of the location where I had been assigned.

I don't know those clients.

I don't know why each of them wanted to leave.

Their reasons may have been completely different from mine, and I don't think it would be responsible to claim otherwise.

But I do think the information matters.

Because earlier in this article I asked how an organization actually knows something “works for most people.”

Transfers are another form of information.

So are people who stop showing up.

So are people who request different providers.

So are grievances.

So are accommodation requests.

So are people who quietly leave.

None of those things automatically tells us why something happened.

But an organization genuinely interested in accessibility should be curious about patterns rather than waiting for every struggling person to produce a perfectly documented complaint.

And this is especially important in systems serving people who may already be overwhelmed, disabled, ill, traumatized, burned out, or struggling to navigate daily life.

The stakes aren't merely whether someone has a pleasant customer-service experience.

These systems intersect with people's ability to access healthcare, housing, financial support, treatment, community resources, and other things that can profoundly affect their lives.

That is why I don't think the appropriate response to disability-related barriers is: most people manage.

The question should be: “What is this barrier costing the people who don't?”

Because accessibility isn't merely about making disabled people's lives a little more convenient.

Sometimes it determines whether people can meaningfully access the very systems that are supposed to support their health and well-being.

And when we already know that autistic people experience serious health disparities, making help harder to access is not something we should be comfortable treating as a minor inconvenience.

Neurodivergent People Don’t Need the World to Revolve Around Us

There is a strange leap that sometimes happens when disabled or neurodivergent people ask for accessibility.

We can't accommodate everything.
The world isn't going to change for you.
Everyone has needs.
Other people matter, too.

All of those statements can be true, but they respond to an argument I don't think most of us were making in the first place.

I don't expect every environment to be perfectly suited to my brain.

I don't expect every person I encounter to understand autism.

I don't expect to get everything I want.

I don't expect never to be uncomfortable.

And I certainly don't expect everyone else to constantly accommodate me while I make no effort to understand or accommodate them.

That's not inclusion; that's just reversing who has to do all the bending.

The alternative is reciprocity.

I can tell you what creates a barrier for me.

You can tell me what constraints you're working within.

I can move where I reasonably can.

You can move where you reasonably can.

And together, maybe we can find something that actually works.

That is what “meeting in the middle” means to me.

In his conversation with Orion Kelly, Dr. Daniel Wendler makes a similar point while discussing differences in autistic and neurotypical communication.

The goal isn't to declare one communication style correct and force everyone else to adopt it.

Both people can become more aware of their differences, communicate more directly, and adjust toward one another.

That seems remarkably reasonable.

Yet disabled people are often asked to move a very long distance before anyone considers whether the other side could move at all.

An autistic person may spend years learning how neurotypical people communicate.

We learn to interpret indirect language.
We learn when we're supposed to make eye contact.
We learn which questions are apparently rhetorical.
We learn how much detail is considered too much.
We learn that honesty can somehow be interpreted as rudeness.
We learn scripts for phone calls, interviews, appointments, small talk, conflict, and countless other interactions.
Some of us learn to monitor our faces, voices, bodies, movements, interests, and reactions so closely that other people may have no idea how much effort the interaction requires.

Then we say: “Could you please put that in writing?”

And sometimes even that small movement in our direction is treated as asking too much.

That's the imbalance I'm questioning.

Not whether autistic people should ever adapt.

We already adapt.

The question is why adaptation is so often considered evidence of maturity and independence when we do it, while relatively small changes from the surrounding system can be treated as extraordinary concessions.

There will always be limits.

An accommodation might genuinely be impossible in a particular situation.

Two people's access needs can conflict.

Organizations have staffing, financial, legal, privacy, safety, and operational constraints.

Sometimes the exact thing someone requests won't be workable.

But “we cannot do exactly that” doesn't have to end the conversation.

It can begin another one: “We can't do that particular thing. What are we trying to accomplish, and is there another way to accomplish it?”

That is very different from: “This is how we do things.”

The first response treats accessibility as collaborative problem-solving.

The second treats the existing system as inherently correct.

And I think that distinction matters enormously in my experience with BJC.

I never asked to communicate exclusively through email.

I never refused all verbal communication.

I participated in a lengthy phone intake, an in-person intake, and an in-person meeting with my case manager.

What I asked for was greater use of written communication when reasonably possible because written information is substantially more accessible for me.

And when verbal communication was necessary, I had an authorized family navigator who could help me navigate it.

There was room for compromise.

There was room for creativity.

There was room to ask what parts of the process genuinely had to happen a particular way and what parts could flex.

That's what I wish had happened.

Because accommodation doesn't require another person to surrender all of their needs to mine.

It requires recognizing that my needs belong in the equation too.

Maybe that is the simplest version of accessibility:

Not everything revolves around me.
Not everything revolves around you.
We both exist here, so now let's figure out how to make that work.

Different Isn’t Defective

“Normal” tells us what is common; it doesn't necessarily tell us what is necessary, healthy, effective, or right.

There is a question underneath all of this that I think we need to become more comfortable asking: is this actually a problem—or is it simply different from what we're used to?

Those aren't the same thing.

Some aspects of disability genuinely are disabling.

There are things about being autistic that make parts of my life substantially harder.

There are barriers I cannot simply positive-think my way out of.

There are things I would like to be able to do more easily.

Acknowledging neurodiversity shouldn't require pretending impairment doesn't exist.

But the opposite mistake happens, too.

Sometimes we take a difference, compare it with whatever society has decided is “normal,” and automatically locate the problem inside the person who differs.

Autistic communication provides an obvious example.

Direct communication can be interpreted as rude.
Less eye contact can be interpreted as disinterest.
Needing additional processing time can be interpreted as not understanding.
Asking clarifying questions can be interpreted as argumentative.
Giving extensive detail can be interpreted as inappropriate.
Wanting information in writing can be interpreted as difficult.
And struggling with small talk can become evidence that someone lacks “social skills.”

But notice how many of those judgments depend on another person's expectations.

Someone isn't necessarily failing to communicate simply because they communicate differently from you.

Sometimes two people are communicating across different sets of social assumptions.

Yet one of those sets of assumptions is frequently treated as neutral, and the other gets diagnosed as the problem.

Orion Kelly and Dr. Daniel Wendler discuss a version of this in the workplace when they examine ideas like “professionalism.”

Some expectations associated with professionalism may genuinely matter.

Others can reflect conventions about social interaction, presentation, or communication that have little relationship to whether someone can actually perform their job.

That's an important distinction because there are absolutely behaviors that matter.

Being cruel matters.

Violating someone's boundaries matters.

Failing to perform an essential responsibility matters.

Creating genuine safety risks matters.

Accessibility doesn't mean declaring every behavior acceptable because someone is neurodivergent.

But making another person uncomfortable by being different isn't automatically the same thing as doing something wrong.

And I wonder how much unnecessary suffering comes from confusing those things.

How many autistic children grow up believing their natural way of existing is embarrassing?
How many adults exhaust themselves monitoring every movement, facial expression, tone of voice, and sentence because they've learned that successful social interaction means making their autism less visible?
How many neurodivergent employees spend more energy appearing “professional” than doing the work they were hired to do?
How many patients get labeled difficult because they ask direct questions?
How many people spend decades thinking: everyone else seems to know how to be a person; why is this so hard for me?

Sometimes support really does mean helping someone develop a skill, but sometimes support should mean helping the environment become more capable of tolerating human difference.

That's a very different goal.

One asks: “How do we make this person more normal?”

The other asks: “What does this person actually need to participate, communicate, contribute, and live well?”

And that brings me back to something that happened during my grievance process with BJC.

At the meeting, I was told that autism was essentially a weakness for them—that staff did not know much about it.

I actually appreciate the honesty contained in admitting a knowledge gap.

Nobody knows everything.

The problem isn't simply not knowing.

The question is what happens next.

Does “We don't understand autism very well” lead to curiosity?
Do we listen to the autistic person?
Do we consult people who understand autism?
Do we look at the documentation provided by their therapist?
Do we work with the disability professional already supporting them?
Do we ask what barriers they're encountering?
Do we learn?
Or does the autistic person continue being expected to fit the existing process despite everyone now knowing that the process may not have been designed with autistic people in mind?

Not knowing can be corrected.

What matters is whether we're willing to learn because autistic people are already here.

We're in healthcare systems.

We're in workplaces.

We're in classrooms.

We're applying for housing and benefits.

We're raising families.

We're creating art.

We're running businesses.

We're seeking therapy.

We're using social services.

We're sitting across the table in grievance meetings trying to explain why something isn't working.

We aren't hypothetical future clients an organization can prepare for someday.

We are the people coming through the doors now.

And perhaps inclusion begins when difference stops being treated as an unexpected complication and starts being recognized as an ordinary part of serving human beings.

Different doesn't automatically mean easier.

It doesn't automatically mean harder.

It doesn't automatically mean better.

And it certainly doesn't mean every difference requires accommodation.

But different does not automatically mean defective.

Sometimes the person needs support.

Sometimes the environment needs to change.

And sometimes both things can be true at once.

Meet Us in the Middle

I don't expect the world to be designed perfectly for me.

I don't expect every person I meet to understand autism.

I don't expect every organization to anticipate every disability, every access need, or every possible barrier before someone encounters it.

I don't expect never to have to adapt.

What I do expect—or at least what I hope we can become better at—is what Orion Kelly and Dr. Daniel Wendler kept returning to in their conversation: meet us somewhere in the middle.

If I tell you something is a barrier for me, you don't have to immediately understand why.

You can ask.

If the solution I suggest isn't possible, you don't have to pretend it is.

Tell me what the constraint is, and let's see whether there is another solution.

If you don't know much about autism, you don't have to become an autism expert overnight: be willing to learn.

If something has always been done a particular way, you don't necessarily have to abandon it, but be willing to ask why it has to be done that way.

And if the answer is essentially because that's how we've always done it, maybe that's an opportunity rather than a threat.

Because disabled and neurodivergent people are already doing an extraordinary amount of adapting.

We learn your systems.
We learn your expectations.
We learn scripts.
We learn which parts of ourselves make other people uncomfortable.
We learn how to explain our disabilities in ways we hope will be taken seriously.
We learn how to request accommodations.
We learn how to advocate when those accommodations aren't provided.
Sometimes we learn grievance procedures, disability law, organizational hierarchies, and complaint processes simply because accessing the thing we originally needed became that complicated.

We bend.

The question I've been asking throughout this article is whether the systems around us are willing to bend, too.

Not break.

Not abandon every standard.

Not give disabled people everything they ask for.

Bend.

Move a little.

Listen.

Get curious.

Question an unnecessary rule.

Offer another communication method.

Give someone enough notice to prepare.

Ask before assuming.

Explain the constraint instead of simply invoking the process.

Believe that something can be difficult even when you cannot see why.

And perhaps most importantly, stop assuming that the person struggling with the system must automatically be the part of the equation that needs fixing.

My experience with BJC has made that question painfully concrete for me.

I entered case management because I needed support.

Instead, I eventually found myself managing the support, documenting the support, escalating problems with the support, explaining my disability to the support, and seeking outside support to deal with the support.

People around me began telling me something wasn't right.

My family navigator, who had recommended BJC for years, came away from my grievance meeting no longer comfortable recommending them.

Other professionals supporting me raised serious concerns. I was encouraged to seek outside disability-rights review.

I was also told by a supervisor from another location that multiple people had been transferring or trying to transfer away from the location where I had been assigned.

None of those things, individually, tells us everything about BJC.

But together with my own experience, they leave me with questions I think helping systems should be willing to ask themselves.

Not: why couldn't this client adapt to our process?

But:

What happened when our process encountered a person it wasn't designed around?
Did we listen when she told us where the barriers were?
Did we become curious—or defensive?
Did we make it easier for her to receive help, or did accessing our help become another job she had to perform?
Who else might be struggling quietly?

Because that's the part I can't stop thinking about.

Maybe the people who question inaccessible systems aren't always the problem those systems need to solve.

Maybe sometimes they're giving us information.

The autistic employee who struggles with an interview might reveal that the interview is measuring social performance more than ability.
The patient who needs information in writing might reveal how much important information other patients are forgetting, too.
The client overwhelmed by an administrative process might reveal that the process is unnecessarily complicated.
The person who finally says “I cannot keep doing this” might be articulating something other people have learned to endure silently.

We don't have to wait until everyone is struggling badly enough to complain before we're willing to make things better.

And we shouldn't require disabled people to become less disabled before they're allowed to participate fully in society.

Accessibility isn't about creating a separate world where disabled people never encounter difficulty.

It isn't about making neurotypical people conform to autistic people instead.

It isn't about deciding that one way of being human is better than another.

It's about recognizing something remarkably simple: we both exist here.

Your needs matter.

Mine do, too.

Your constraints are real.

So are my barriers.

Tell me what you need.

I'll tell you what I need.

Let's figure out where each of us can move.

Because inclusion cannot mean inviting different kinds of people into systems and then requiring them to become more like everyone else in order to survive being there.

And accessibility cannot mean teaching disabled people to tolerate inaccessible systems better.

Meeting in the middle requires two directions of travel.

Maybe that's where genuine inclusion begins.

Not when everyone becomes the same, but when we finally build enough room for people who aren't.