Accessibility Is Not a Privilege

A decorative image of the author using her upright rollator.

As a person with a disability, I often get frustrated when people treat my need for accessibility as if it were a special privilege. I have heard people say, “Oh, you are so lucky you have a handicap parking placard.” I am not lucky that I need one. I would give anything to park at the far end of a lot and walk in without pain, fatigue, or risk. That is simply not an option for me.

Accessibility is not a favor. It is a basic right in our society. We have laws that are supposed to protect that right, yet those laws are not enforced the way they should be. Too many people, both in leadership and in the general community, still do not see accessibility as essential, so they ignore it, assuming nothing will happen if they cut corners. Most of the time, they are right and nothing does happen.

Even with laws in place, people with disabilities have to do extra work before going out. They search online for entrance photos, call ahead to ask about elevators, ramps, and accessible restrooms. and make backup plans in case those features are broken or blocked. Most people never have to think about any of this. For a person with a disability, it is part of daily life.

As a person with a disability, this is my reality because accessibility is often overlooked or an afterthought. Sometimes, the automatic door doesn’t work. The ramp might be hidden behind the building near the trash dumpster. The front door may be open, but the door leading from the ramp may be locked. There might be an accessible restroom, but it could be out of order for weeks or down a hallway made too narrow by chair storage. I’ve learned to expect these problems, but I shouldn’t have to.

So understand, I refuse express gratitude for the bare minimum. I’m not going to gush with thanks because a public space has a ramp or an elevator. They are basic requirements that allow disabled people to participate in everyday life. They are required. Expecting us to be thankful for access to the world around us is so unfair.

Real progress will only happen when businesses and public places stop treating accessibility as a charitable gesture and start treating it as a core responsibility. This will happen when enforcement is taken seriously and accessibility is seen as nonnegotiable.  Equal access is not a special privilege. It is a fundamental right.

I Couldn’t Even Get in the Door – Jan Mariet’s A Day in the Life

Why Disabled People Are Still Shut Out of Leadership – Jan Mariet’s A Day in the Life

Reimagining Accessibility:  Undoing Ableism Among  Disabled and Medical Communities – Jan Mariet’s A Day in the Life

Reimagining Accessibility:  Undoing Ableism Among  Disabled and Medical Communities

Ableism is the assumption that being able-bodied or non-disabled is the default, the goal, or the standard everyone should be measured against. People who do not fit that mold are expected to adapt, work harder, or accept being excluded.

Ableism comes in many forms. It can be intentional or unintentional, external or internal, and it often appears as judgment, disbelief, or praise that comes with conditions. At its core, ableism is the belief that some bodies and abilities are more valuable than others.

Ableism is prevalent not only in the non-disabled part of society, but even among those with disabilities and within the medical community that interacts with them. One common form shows up as judgment. It often sounds like, “I have this disability and I manage to work, so she should be able to work too.”

This way of thinking assumes that all disabilities function the same way, that all bodies respond similarly to effort, and that outcomes are purely a matter of willpower. It ignores differences in severity, progression, pain, fatigue, comorbid conditions, and access to support. It also ignores the fact that some people are paying an enormous physical and emotional price for what they are managing to do.

Another deeply ingrained form of ableism is the belief that if you want something badly enough and are willing to work hard enough, you can achieve it. Many of us were raised on this idea. For people with disabilities, this belief can be especially damaging. Some push and push, convinced that if they just try harder, success will follow. Instead, they worsen their condition, exhaust themselves physically and emotionally, and slowly break their own spirit. When they fail, they blame themselves, because they truly believe success would have been possible if they had worked hard enough. That belief itself is ableist, even when it comes from within the disabled community.

Intentional ableism occurs when barriers are known and deliberately ignored or dismissed. This includes business owners who refuse to add ramps or accessible entrances because they believe it would ruin the appearance of a building, even though they understand it excludes wheelchair users.

It appears when employers decline to hire qualified candidates after learning they need accommodations, without ever discussing what support might make the job accessible. It shows up when events are consistently held in inaccessible spaces and disabled people are told they can look at photos later or simply miss out.

Intentional ableism also includes denying legally required accommodations because they are viewed as too costly or inconvenient, or framing disabled people as burdens rather than as members of the community. In many cases, accessibility features are added only after complaints or legal action, and even then are implemented in the most minimal way possible.

Another type of ableism is unintentional. Most unintentional ableism is not about being unkind. It comes from assumptions people do not even realize they are making. It can sound like telling someone, “If I can push through the pain, so can you,” without recognizing that another person’s body or condition works very differently. It appears when spaces are designed with stairs as the primary entrance and accessibility is treated as an afterthought, even though exclusion was never the intent.

Unintentional ableism includes praising disabled people for ordinary tasks because those activities are assumed to be extraordinary, or believing that assistive devices alone have solved accessibility problems. Comments like “You do not look disabled” are often meant as compliments but still reflect harmful assumptions. It also appears when activities are planned around long periods of walking or standing, and organizers are genuinely surprised when someone cannot participate.

A third type of ableism is external. External ableism comes from the world around us. It exists in systems, policies, environments, and interactions that assume non-disabled bodies and minds are the norm. It includes buildings designed with stairs as the main entrance, workplaces that measure productivity without accounting for pain or fatigue, and public spaces that technically meet accessibility requirements but are still functionally unusable.

External ableism also shows up in attitudes, such as questioning whether someone truly needs accommodations, assuming disability limits intelligence or worth, or praising disabled people only when they appear to overcome their limitations in ways that make others comfortable. These messages are reinforced through social expectations, media portrayals, and institutional practices that treat disabled people as exceptions rather than as part of the population.

The fourth type of ableism is internal. Internal ableism happens when cultural beliefs about productivity, independence, and worth are absorbed and turned inward by people with disabilities themselves. It can look like believing you should be able to do something because others with similar diagnoses can, even when your body is clearly telling you otherwise. It shows up as guilt for resting, shame for needing help, or pushing past safe limits because you were taught that effort equals worth.

Internal ableism can also mean minimizing your own needs, delaying the use of assistive devices because they feel like a sign of failure, or blaming yourself when accommodations are necessary. Over time, this pressure erodes self-trust and self-compassion, leaving people feeling inadequate for limitations that are not personal failings.

Disabled people are often just as affected by external and internal ableism as their non-disabled peers because they grow up in the same ableist society as everyone else. Long before a disability is acquired, recognized, or diagnosed, most people absorb cultural messages that equate productivity with worth, independence with success, and limitation with failure.

Those beliefs do not disappear simply because someone becomes disabled. Instead, they are carried forward and applied both to yourself and to others with disabilities. When disabled people judge another person’s limitations, compare coping strategies, or assume that effort should lead to the same outcomes for everyone, they are often drawing on standards they were taught long before they had reason to question them.

Many disabled people have also been rewarded for acting as if they were able-bodied for as long as they could. Pushing through pain, minimizing symptoms, and avoiding accommodations are often praised by teachers, employers, doctors, and even loved ones.

Over time, this reinforcement teaches people that acceptance comes from appearing capable and low-maintenance. When those expectations can no longer be met, discomfort, judgment, or resentment often follow. This fuels external ableism toward others with disabilities and deepens internal ableism directed inward.

There is also fear at the center of this. Disability is unpredictable, and progression or decline can be deeply frightening. Judging another disabled person for needing more help can become a way of distancing yourself from that fear, as if believing “that will not happen to me” offers protection.

Internal ableism often grows from the same place. Admitting the full extent of your limitations can feel like giving up or confirming the very stereotypes society fears most. As a result, many disabled people hold themselves to impossible standards and, without intending to, reinforce those same standards in others.

Medical ableism adds another powerful layer to this experience. It appears in how chronically ill and disabled people are viewed and treated within the healthcare system. Medical care is often guided by the assumption that the goal is a return to a previous version of normal, rather than helping someone adapt to a changed body and build a sustainable life within new limits. When recovery to a former level of function is not possible, care may stall, shift into dismissal, or quietly withdraw.

New or worsening symptoms are frequently dismissed as “just part of the disability,” even when they represent meaningful changes in function or quality of life. Chronic pain, fatigue, neurological symptoms, and digestive issues are especially likely to be minimized.

Instead of being investigated, they are folded into an existing diagnosis and treated as something the patient should simply endure. Over time, patients learn that reporting symptoms may not lead to help and may even mark them as difficult.

Quality of life is also often undervalued in medical decision-making. The focus tends to remain on lab results, imaging, or disease markers, while daily function, comfort, and dignity are treated as secondary concerns.

For many chronically ill and disabled people, some level of pain or limitation is unavoidable. The goal is not perfection, but a life that is manageable and meaningful. When that reality is ignored, patients are left surviving rather than living.

Pain management exposes medical ableism particularly clearly. Some patients are denied necessary medication because of fear, stigma, or rigid policies that fail to account for individual circumstances. Others are labeled as drug-seeking simply for advocating for relief that would allow them to function at all.

At the same time, some patients are given pain medication dismissively, not as part of a thoughtful plan to improve quality of life, but as a way to end the appointment without engaging in deeper care. In both cases, the message is the same. The lived experience of the disabled person is not worth sustained effort.

Medical ableism reinforces the idea that disabled lives are inherently less, or that suffering is an acceptable condition of chronic illness. It discourages collaboration, dismisses patient expertise, and places unrealistic expectations on bodies that have already changed. Recognizing medical ableism requires a shift away from restoring a past that may no longer be possible and toward supporting a new normal that prioritizes safety, dignity, and quality of life.

Ableism is not just something that happens to disabled people. People with disabilities are just as likely as those without disabilities to be influenced by ableist thinking. It is so deeply woven into our culture, our work ethic, and our way of life that no one, no matter how well-meaning, is fully exempt. It is something we must all actively unlearn.

Actively unlearning ableism is not a one-time realization. It is an ongoing practice of noticing, questioning, and changing how you think, speak, and act.

It starts with awareness. This means paying attention to your own assumptions about productivity, independence, pain, and worth. When you catch yourself thinking that someone should be able to do something because you can, or because another disabled person can, pause and ask where that expectation came from. Many of these beliefs are inherited from culture, not grounded in reality.

Listening to disabled voices is essential, especially voices that differ from your own experience. Disability is not one-size-fits-all. People with different conditions, severities, resources, and support systems will have very different limits and needs. Believing people when they describe their pain, fatigue, or barriers, without comparison or judgment, is a key part of unlearning ableism.

Unlearning ableism also means redefining success. Instead of measuring worth by productivity, endurance, or independence, it means valuing sustainability, safety, dignity, and quality of life. Rest is not failure. Needing help is not weakness. Using accommodations is not giving up. These shifts are often hardest for disabled people themselves, because internal ableism is reinforced by praise for pushing through at any cost.

Another important step is examining how you respond to accessibility. When accommodations are inconvenient, slow, or expensive, do you see them as burdens or as basic inclusion? Do you view accessibility as optional or as a fundamental part of participation? Challenging those reactions, even silently, is part of the work.

Finally, unlearning ableism requires self-compassion. Everyone raised in an ableist culture will reflect it in some way. Catching yourself in ableist thinking does not make you a bad person. It gives you the opportunity to choose differently. Over time, those choices add up. Unlearning ableism is less about perfection and more about the willingness to keep noticing, learning, and adjusting.


Thoughts from the Author: There are many adaptations that help people with disabilities function in an inaccessible world. Wheelchairs, rollators, canes, crutches, speech-to-text, text-to-speech, visual enhancements, eye-tracking technology, and more. These tools are valuable and often essential. But when the world itself remains inaccessible, the presence of adaptations can give able-bodied people the false impression that accessibility has been solved.

A person in a wheelchair still cannot cross the gap to board a train. A person using a rollator still cannot climb an outdoor flight of steps with no railing, like those found at historic and grand sites across the country. Someone using crutches may be completely exhausted after navigating a gravel path with exposed roots and brush. An able-bodied person may see a wooden pier and assume it is accessible, without realizing that uneven boards can exhaust a rollator user or leave someone using a cane or crutches constantly off balance.

A temporary ramp placed over a few steps at the entrance of an otherwise accessible restaurant may be too steep for a wheelchair user to navigate independently. Relying on strangers for physical safety turns participation into a risk calculation rather than a simple outing.

Most people with disabilities understand that not everything can be made accessible. A historic colonial manor cannot have its second floor made accessible without altering the history being preserved. Narrow hallways that are too tight for wheelchairs or rollators cannot simply be fixed.

But in modern construction, accessibility is still too often treated as an afterthought. It is framed as a regulation to be met cheaply, while millions are spent on dramatic staircases and revolving front doors. Disabled access is routed to side entrances or long zigzag ramps that lead to less prominent doors, sending a clear message about who the space was designed for.

Older buildings are frequently retrofitted with small wheelchair lifts that require finding someone with a key and waiting for another person to operate the equipment. From experience, that person is often located in a part of the building the wheelchair user cannot reach without the lift. This raises serious safety concerns. In an emergency, disabled people are once again forced to rely on strangers, potentially putting multiple lives at risk because exits are inaccessible.

And yet, many people without mobility disabilities believe the world is fairly accessible now. The harder question may be whether those of us who are disabled, but not visibly or mobility impaired, sometimes hold the same belief. Ableism is not just something that happens to disabled people. It is something we all must actively unlearn.


Other articles you might enjoy include: Can I or Should I? Living With Disability, Risk, and Hard Choices – Jan Mariet’s A Day in the Life

The Disability Catch-22 – Jan Mariet’s A Day in the Life

Designer Shoes and Disability: Why Judging Others Is Obscene – Jan Mariet’s A Day in the Life

Can I or Should I? Living With Disability, Risk, and Hard Choices

A hostess at the hostess stand of a fancy restaurant is talking on the phone, answering a question.  Her answer is, "Yes, we're accessible, once you get past the front steps."  There are three steps patrons must get up to eat in the restaurant.   Some able-bodies people don't understand that isn't really accessible at all.

Being disabled doesn’t always mean I can’t do something. Sometimes I can but doing it would come with a cost that more able-bodied people do not see and do not understand.

The truth is this; able-bodied people rarely find themselves in a position where they have to choose between doing something they really want to do and incurring long-term pain or even an injury that could put them in the hospital.  For people with life-limiting conditions, we have to face this option often.

So, the question isn’t can I, it’s should I?  And most of the time, the honest answer is no.

Will I sometimes do it anyway? Yes. But that choice has to be rare and made with caution, because even when I can do something, I will still pay for it later with pain, fatigue, soreness, a flare, or even a long-term injury.

Sometimes the situation truly warrants that cost. If a child were injured at the bottom of a stairway, and there was no one else to help,  I would take that risk without hesitation, even knowing it could hurt me or cause me to fall. Some moments have a moral component that calls for action despite the risk.   

But that is a rare exception.  Something like visiting a new nightclub, eating at a fabulous restaurant, or any kind of optional outing that requires me to risk a fall or a broken bone is a situation where I can’t afford to take the risk. In those cases, the cost is not reasonable, and saying no is the responsible choice.

Living with a life-limiting condition means constantly weighing the risks against the consequences. Every yes has consequences.  This is not about fear or unwillingness. It is about reasoning, responsibility, and life experience. When I say no, I am not being difficult or dramatic. I am making a deliberate choice to protect my health, my safety, and my ability to function tomorrow and beyond. That is not weakness. It is wisdom learned the hard way.


Here are more reflections on living with a disability, chronic illness, or a life-limiting condition.

When Change Sneaks Up on You – Jan Mariet’s A Day in the Life

My Story Isn’t Public Property  – Jan Mariet’s A Day in the Life

Designer Shoes and Disability: Why Judging Others Is Obscene – Jan Mariet’s A Day in the Life

Disabled People Don’t Need Permission to Enjoy Life – Jan Mariet’s A Day in the Life

We’ve Been Gaslit So Long, We Gaslight Ourselves – Jan Mariet’s A Day in the Life.

Busting Disabled Parking Myths: Facts About Handicap Placards

A bright yellow background with colorful cursive words that say, "Don't Judge a Disability by its Visibility."

🚫 Busting Disabled Parking Myths ♿️

Disabled people are facing increasing harassment for using disabled parking placards (handicap hang tags & license plates). Let’s get the facts straight.


🔴 Myth 1: “You don’t look disabled.”

✅ Fact: There is no single “disabled look.” Many disabilities are invisible, fluctuating, or not obvious to strangers. Some conditions, such as lung or heart disease, may not be visible at all but can severely limit how far a person can safely walk.


🔴 Myth 2: “You are too young to need a disabled parking placard.”

✅ Fact: Disability has no age requirement. Children, teens, and adults of all ages can have serious medical conditions that limit mobility, endurance, or safety.


🔴 Myth 3: “Disabled parking is only for wheelchair users.”

✅ Fact: Disabled parking is for people whose disabilities affect mobility, pain, fatigue, breathing, balance, safety, or the ability to walk distances, not just wheelchair users.


🔴 Myth 4: “If you can walk, you shouldn’t have a disabled parking placard.”

✅ Fact: Being able to walk is not the same as being able to walk safely, repeatedly, or without severe pain or exhaustion.


🔴 Myth 5: “People get disabled parking placards easily.”

✅ Fact: The application process is medical, evidence-based, and often difficult. Many people are wrongly denied and must appeal.


🔴 Myth 6: “Disabled parking misuse is widespread.”

✅ Fact: Fraud exists, but it is rare. Media outrage exaggerates the issue while ignoring the real harm caused by the harassment of legitimate placard holders.


🔴 Myth 7: “Challenging people protects disabled parking.”

✅ Fact: Public policing harms disabled people, not fraudsters. Enforcement is the responsibility of local authorities, not strangers in parking lots. Disabled people do not owe anyone an explanation of their disability or why they use a disabled parking placard. If a placard is displayed, a medical professional and the state have already determined eligibility.


⚠️Disabled parking is an accessibility tool, not a privilege. Trust the system, respect the placard, and let disabled people move through the world without fear of confrontation. Disabled parking exists to reduce harm and increase access, not to invite judgment or interrogation. Most disabled people are already navigating pain, fatigue, and medical uncertainty. The last thing they need is to defend their legitimacy in a parking lot. A little restraint and respect go a long way. ‼️


Other

articles you might enjoy:

Designer Shoes and Disability: Why Judging Others Is Obscene – Jan Mariet’s A Day in the Life

Disabled People Don’t Need Permission to Enjoy Life – Jan Mariet’s A Day in the Life

Disability Benefits Myths & Facts – Jan Mariet’s A Day in the Life

My Story Isn’t Public Property  – Jan Mariet’s A Day in the Life

When Accessibility is Treated Like an Option – Jan Mariet’s A Day in the Life


Why Holidays Can Be So Hard for People with Chronic Illness

Image of a warmly decorated door for a holiday celebration.  At the bottom of two steps, a man in a wheelchair, holding a small wrapped gift is looking at the door, and realizing he can't get in.  The words say, "Sometimes the distance between 'included' and 'excluded' is just one step.

People often assume that if someone with a chronic illness skips a holiday gathering, it is because we do not want to be there. Nothing could be further from the truth. We miss those moments more deeply than anyone realizes. Even small celebrations can feel like running a marathon with a body that is already on empty.


The Effort Behind Getting Ready

For most people, leaving the house is simple: shower, get dressed, grab your keys, and go. For those of us living with chronic illness, it is a carefully planned operation. Every small step, like washing hair, brushing teeth, getting dressed, and traveling there and back, costs energy we may not have. What looks like a single outing might take days of preparation and a week of recovery.

For me, even showering is a major effort. I use several assistive devices just to get clean. My long-handled silicone body brush helps me reach what I cannot. Afterward, I use a lotion roller that looks a bit like a small paint roller because I am unable to bend in certain ways.

People do not always realize the struggle that comes with arthritis and neuropathy in the hands. Opening a deodorant cap can be a challenge. If I leave it off, it dries up. I use an automatic toothpaste dispenser because I cannot squeeze the tube or twist the cap easily. Even the sprayer on my perfume can be tricky.

Then comes blow drying my hair. I cannot hold a typical dryer for long. My hands give out, and I drop it. There are countertop racks, but my counter is not big enough, and standing or bending to reach them is painful. After a lot of trial and error, I found a lightweight dryer that I can balance on the counter and hold by the nozzle. That is why I keep my hair short. It saves time, reduces pain, and makes the process manageable.

I often wonder if other women have to choose a hairstyle based on grip strength and how long they can tolerate pain in their hands. I doubt most people consider how much effort and concentration it takes just to get cleaned up each day.


The Complicated Art of Getting Dressed

Getting dressed might look simple, but for many of us it is a daily challenge. Putting on socks or shoes when you cannot bend, zipping zippers you cannot grasp, or hooking a bra with fingers that will not twist takes energy and time most people never think about.

I use a sock aid, a dressing stick, and a grabber to manage clothes. When zippers or buttons are unavoidable, I reach for a zipper pull and a button hook. Many shoes require a long-handled shoehorn. After I am dressed, I still need to put all those devices away so I can find them next time. It takes extra time and extra energy, which I do not have in abundance.


The Penalty for Looking Good

There is a strange penalty for looking good when you are chronically ill. People mean well when they say, “You look great,” but the phrase can sting. If we look too well, people assume we are exaggerating our illness. Some even congratulate us on recovering, as if our illness disappeared because we washed our hair and put on nice clothes. If we look sick, we are pitied or told to try harder.

We cannot win. Existing in public can feel like being on trial. That emotional strain adds another invisible layer of exhaustion.


The Mental Load of Being Around People

When your body lives in survival mode, processing sounds, lights, and conversation takes real effort. Following multiple conversations or navigating new environments can be overwhelming. What looks like zoning out is often us using every bit of energy just to stay present.

What sounds like cheerful background noise to others can feel like an assault on our nervous systems. Noise, flashing holiday lights, and overlapping voices can cause pain, dizziness, migraines, or sensory overload.

You might see us turning our heads from group to group, trying to decide which conversation to follow. When a group bursts out laughing or someone shouts across the room, we may physically flinch. Our bodies often stay in fight or flight, and that surge of sound can trigger panic or the need to escape.

A quiet space to retreat to during a gathering helps more than most people know. When that is not available, many of us leave abruptly. It is not because we do not enjoy the company. It is because our bodies cannot handle more stimulation.


The Risk of Illness and Awkward Moments

For people with chronic illness, a simple cold, flu, or COVID exposure can cause months of setbacks or lasting damage. Gatherings filled with hugs, shared food, and laughter are also filled with germs, and we cannot always take that risk.

There are awkward moments too. Many older gentlemen greet with a firm handshake. It feels friendly to them, and like a vise to someone with arthritis or neuropathy. When pain shoots through your hand and you grimace, the moment turns uncomfortable for everyone. No one intends harm, but it dampens the holiday spirit.


Food, Culture, and Understanding

Many people with chronic conditions have restrictive diets. We might bring our own food or skip eating altogether, not to offend anyone, but to stay safe from allergies, digestive issues, or intolerances. In many cultures and families, refusing food is seen as rude, which makes this even harder.

I have so many food restrictions that my neighbors and I joke about me coming over to ‘not eat.’ They have watched my medical journey and understand why I cannot eat most foods. Others sometimes take offense. They assume I am being picky or dramatic. I have learned to laugh, but I will not make myself sick to spare someone’s feelings.


Scents and Sensitivities

Perfume, air fresheners, scented candles, and cleaning sprays can trigger severe reactions for many people with chronic illness. I am fortunate that this is not one of my personal challenges. For others, a home that smells fresh and festive can lead to hives, migraines, or even an emergency room visit. That is not the kind of holiday anyone wants.


The Struggle for Accessibility

Even if someone does not use a wheelchair every day, steps, narrow spaces, and low seating can make a home inaccessible. We are not trying to be difficult guests. We are trying to be safe.

I cannot climb steps without help. If a home has many stairs, I cannot go. One or two steps are possible if someone assists me. That can mean waiting outside until someone notices, or asking a stranger for help. Both are awkward and embarrassing. If no one comes, you either leave or call inside, which feels humiliating.

Low furniture is another obstacle. I cannot safely rise from a chair that sits lower than a certain height, and overstuffed sofas are out of the question. I have learned to ask for a kitchen or dining room chair so I have a safe place to sit.

Bathrooms can be their own obstacle course. It is not safe for me to use a low toilet unless there are grab bars or something sturdy nearby. One of the first things I do at a party is quietly check the bathroom. If I cannot use it safely, I plan to leave before I will need it. I do not explain why. I make a polite excuse. Saying, “I have to leave because your toilet is inaccessible,” is not something I can bring myself to do.


A Message for the Able-Bodied

If you have never had to think about accessibility, try imagining it for a moment.

How much would you enjoy going to a party where you had to ask someone to help you get in the front door? Would you enjoy having to lean on a near-stranger for support just to enter the house? Would that make you feel festive, or embarrassed and dependent?

Imagine worrying whether you can find a place to sit and join in conversation, knowing that most of the furniture is too low for you to use. You may find one suitable chair, but it is off to the side, far from the laughter and warmth of the group.

Now picture being tempted by foods you used to love but can no longer eat. You bring your own food, your own drink, maybe even your own utensils, and must figure out where to keep them or carry them with you all night. How festive does that sound?

And finally, think about being unable to use the restroom safely. Would you be comfortable telling your host that you need to leave because their toilet is too low or lacks grab bars? There is no graceful way to say that without embarrassing either of you.

If you have never had to consider these barriers, consider yourself not just lucky, but privileged. Accessibility is not about convenience. It is about dignity.


Getting There and Getting Home

Even getting to the party can be complicated.  If someone offers you a ride, can you get in and out of their car? Will your assistive device fit in their trunk, and will their trunk even be empty? If you need to leave early because you are in pain or overstimulated, how will you get home? Asking someone to leave early for you feels awful, but waiting hours in agony is worse.

Driving yourself has its own challenges. Can you park close enough to the house? Can you manage gravel, grass, or a steep driveway? Can you lift your mobility aid out of the car? These are not small details. They are the difference between attending and staying home.


Final Thoughts

None of this is about being difficult. Most of us with chronic illnesses would give anything to join the fun without a second thought. We miss things we desperately wish we could do. So, if someone declines your invitation, cancels at the last minute, or needs extra help, please understand. It is not that we do not want to be there. It is that sometimes our bodies will not let us.


How to Help During the Holidays

1. Offer flexible invitations. Let your friend know that showing up late, leaving early, or changing their mind is perfectly okay. Flexibility means everything.

2. Ask about accessibility in advance. A quick message like, “Is there anything that would make it easier for you to join us?” shows care and avoids awkward surprises. If you are choosing a place to hold a holiday celebration, and you are inviting people who use wheeled assistive devices or people who aren’t able to climb stairs, choose an accessible location.

3. Provide a quiet space. A calm corner or spare room where someone can rest or escape noise can make the difference between staying or leaving.

4. Respect food and scent sensitivities. Avoid strong fragrances, and don’t pressure anyone to eat what you’ve made. They are not rejecting you, they are protecting their health.

5. Offer practical help. Help carry bags, open doors, or bring food to their seat. Small gestures add up to big relief.

6. Don’t make assumptions. If someone looks well, that doesn’t mean they feel well. Compliments are fine, but skip the “You look great, you must be better!” comments.

7. Stay connected. Even if your friend can’t attend, include them in photos, video calls, or messages. It reminds them they are missed and valued.


Here are some other articles that might pique your interest.

Many Wheelchair Users Can Still Stand and Walk – Jan Mariet’s A Day in the Life

Disabled People Don’t Need Permission to Enjoy Life – Jan Mariet’s A Day in the Life

Let’s keep the conversation going! Add your comments below!

My Story Isn’t Public Property 

Stop Asking, “What Happened to You?”

Image of a man slumped over in his wheelchair, eyes downcast, as a smiling female reporter holds a microphone towards him and asks, "So, what happened to you?"

Have you ever noticed that when you live with a visible disability, total strangers sometimes feel entitled to ask, “So, what happened to you?” Not trying to be rude here, but believe it or not, I don’t owe my medical history and life story to anyone, least of all strangers.

It’s as if people see a disabled person and immediately think, “How terrible! I wonder what happened?” Then, instead of keeping that thought private, they actually ask. You would never ask such a personal question to a non-disabled person you’ve just met, so why is it considered acceptable when the person is disabled?

Too often, people see us as broken or as the subjects of some tragic story they’re curious to hear. Or they want an inspiring tale of triumph over tragedy, when in reality, these experiences are deeply personal and sometimes too personal to share even with close friends, much less with strangers or casual acquaintances.

Let’s normalize respecting boundaries and not treating disabled people like public stories waiting to be told.


Author’s Note: In writing this article, I made an important realization about myself. I have been so conditioned to just accept this intrusion that I not only answer them, but tend to blab my entire life journey. I overshare with strangers, I think, because I still feel the need I’ve felt all my life — to ‘prove’ that I am worthy. I am now making a conscious effort to stop doing this!

So, I’ve been trying to think of some things I could say to a person who asks this intrusive type of question, that aren’t rude, but that make the point that their question is inappropriate and that I have no intention of answering it.

Here are a few I thought of:

“That’s actually pretty personal. I’d rather not get into it.”

“I appreciate your concern, but that’s not something I talk about with strangers.”

“It’s a long story, and not one I usually share.”

“That’s actually a really personal question for disabled people. Most of us prefer not to be asked.”

“I know you probably meant well, but that’s not something strangers should ask.”

“I’m happy to chat, but not about my medical history.”

“Just so you know, asking a disabled person what happened can feel invasive.”

If you have any other suggestions, please leave me a comment. I’d love to know what you think!


Take a moment to explore other articles about living with disabilities or chronic illnesses by Jan Mariet.

Designer Shoes and Disability: Why Judging Others Is Obscene – Jan Mariet’s A Day in the Life

Disabled People Don’t Need Permission to Enjoy Life – Jan Mariet’s A Day in the Life


Have you ever had a stranger ask you an intrusive question like “What happened to you?” Leave a comment and let’s create a space where our stories remind others they’re not alone.

Designer Shoes and Disability: Why Judging Others Is Obscene

A woman recently shared that she was accused of “scamming the system” because, in her wheelchair, she wore designer shoes. What her critics didn’t know, and didn’t care to ask, was that the shoes were a gift from her daughter.

A decorative image of a wheelchair user, a white, middle-aged woman, wearing stylish shoes with confidence, representing dignity and self-worth. She is leaving a medical office.

This kind of judgment isn’t rare. Disabled people are often scrutinized for daring to own or enjoy anything that seems “too nice.” A phone, a manicure, a night out, or yes, even a pair of designer shoes, becomes “evidence” that they must be cheating the system — as if disability benefits are supposed to buy only misery.

Let’s be clear: disabled people don’t have to live in visible desperation to be considered “worthy” of help. They deserve a life, one with comfort, dignity, and moments of joy. And those benefits people resent so much? They rarely cover even basic living costs, much less luxuries.

What’s truly obscene is the assumption that strangers can judge who is or isn’t “really” disabled based on a snapshot in time. Many disabilities are invisible. Many people are dealing with mental health conditions they don’t disclose because of stigma. So, when someone says, “I know she’s not disabled because she looks fine” or “he can walk, so he must be faking,” they’re not exposing fraud; they’re exposing their own ignorance.

No one owes the public an explanation of their medical history. The Social Security Administration already requires extensive documentation and verification before granting benefits. If they’ve been approved, that’s the end of the conversation.

Instead of policing how disabled people live, dress, or smile, maybe we should ask why society is so uncomfortable with the idea of disabled people having anything good in their lives.

Because the truth is simple: Joy is not evidence of fraud.


If you enjoyed this article, you might enjoy Disabled People Don’t Need Permission to Enjoy Life – Jan Mariet’s A Day in the Life

Many Wheelchair Users Can Still Stand and Walk

When most people picture a wheelchair user, they imagine someone who cannot walk at all. In reality, that description only fits a small minority of wheelchair users. Many people who use wheelchairs can stand or walk short distances but rely on mobility aids for safety, energy management, or independence. Wheelchair use is not always about the inability to walk. It is often about the cost of walking: physically, energetically, and emotionally.


Why People Use Wheelchairs

A group of friends, including one friend in a wheelchair, chat, laugh, and have a good time.  The caption on the photo says, "Belonging is something we all deserve."

“Why do people use wheelchairs?” It seems like a simple question: “Because they can’t walk.” But that answer leaves out most wheelchair users. Many can take a few steps or stand briefly, yet walking may cause pain, fatigue, dizziness, or imbalance. A wheelchair provides a safer, more sustainable way to move through the day and participate in activities they might otherwise have to skip.

Mobility and stamina can vary greatly from day to day, depending on pain levels, fatigue, or symptom flare-ups. Some people use a wheelchair occasionally, while others rely on one regularly. During busy periods or stressful times, wheelchair use often increases as people try to manage symptoms while still engaging in daily life. Rather than symbolizing limitation, a wheelchair often represents freedom, safety, and inclusion.


How Common Is Ambulatory Wheelchair Use?

There is no official U.S. statistic separating wheelchair users who cannot walk from those who can. However, national surveys show that most wheelchair users report conditions such as arthritis, stroke, multiple sclerosis, or orthopedic disease, conditions that often allow partial mobility. Only a smaller share cite complete paralysis. In short, many wheelchair users are ambulatory, while a minority are completely unable to walk.

Ambulatory wheelchair users are those who can walk or stand to some extent but use a wheelchair to conserve energy, reduce pain, or prevent falls. Many chronic illnesses are unpredictable. Someone might walk into a restaurant one day and need their wheelchair the next.

Outsiders sometimes misinterpret this variability as inconsistency or exaggeration, when it is actually a hallmark of fluctuating conditions such as multiple sclerosis, Ehlers-Danlos syndrome, postural orthostatic tachycardia syndrome (POTS), or chronic pain disorders.

Conditions that often involve partial mobility include arthritis, lupus, POTS, long COVID, Ehlers-Danlos syndrome, chronic fatigue syndrome, neuropathy, and spinal or joint disorders. Being able to take a few steps does not mean someone can walk safely, consistently, or without pain.


Myths and Misconceptions

Myth: Wheelchairs are only for people who cannot walk.
Fact: Most wheelchair users can walk, just not safely, consistently, or far enough.

Using a wheelchair is not giving up or taking the easy way out. It is choosing safety, independence, and participation over exhaustion, injury, or isolation. Some ambulatory wheelchair users walk indoors but use their wheelchair in airports, shopping centers, or places that require long distances. Others use it during flare-ups, in bad weather, or when fatigue or dizziness increases.

Unfortunately, mobility aids are sometimes viewed as a “last resort,” but early use can prevent overexertion, falls, and long-term damage. Insurance policies and medical gatekeeping often make it difficult for ambulatory users to access appropriate equipment, reinforcing the myth that wheelchairs are only for those who cannot walk.


A Tool of Liberation, Not Limitation

For many people with chronic illness, a wheelchair is not a symbol of paralysis; it is a symbol of freedom. It allows them to attend events, travel safely, and enjoy life without collapsing in pain or exhaustion. Being able to walk a few steps does not mean someone can walk a few blocks, stand in a long line, or navigate uneven ground. The ability to walk does not erase the need for wheels.


Energy Budgeting and Wheelchair Use

Energy budgeting, sometimes called energy management or spoon theory, is one of the least understood aspects of chronic illness. Think of energy as a limited daily allowance, like money in a checking account. Healthy people start the day with a full balance, but people with chronic conditions begin with a smaller and less predictable budget. Every activity, physical, mental, or emotional, withdraws energy: showering, dressing, cooking, walking, holding a conversation, or managing pain. When the account runs dry, symptoms such as fatigue, pain, or dizziness worsen, and recovery can take hours or days. Energy budgeting is the process of spending that limited energy wisely to avoid “crashes” or flare-ups.

A wheelchair plays an essential role in this budgeting process. It is not only about whether someone can walk but about how much energy walking costs and whether it is worth spending that energy. Someone with arthritis may walk across a room but lose the energy needed to cook or socialize later. A person with POTS or Ehlers-Danlos syndrome might stand for a few minutes but faint or dislocate a joint if they push too far. A person with multiple sclerosis might walk short distances but use a wheelchair to prevent fatigue or heat-related symptoms. By using a wheelchair, they conserve energy for the things that bring meaning and joy, not just survival. A wheelchair is, in this sense, a powerful budgeting tool; it allows people to save their energy for what matters most.


Final Thoughts

Wheelchair use is not simply about whether someone can walk. It is about the effort, pain, and risk that walking may cause. For people with chronic illnesses, walking even short distances can deplete the limited energy they need for self-care or participation in daily life. Using a wheelchair helps them prevent fatigue, reduce pain, and live more fully. A wheelchair does not represent loss; it represents access, safety, and choice—the freedom to live life on one’s own terms.


Other articles that might interest you are:

Disabled People Don’t Need Permission to Enjoy Life – Jan Mariet’s A Day in the Life

The Disability Catch-22 – Jan Mariet’s A Day in the Life

Disability Benefits Myths & Facts – Jan Mariet’s A Day in the Life