Rethinking Disability

Three people with disabilities are in a hotel lobby.  The first is walking independently with great effort.  The second is walking easily while using a cane.  The third person is an ambulatory wheelchair user.

Why a Diagnosis Does Not Tell the Whole Story

Having a disability is not a single, uniform experience. It exists across a wide spectrum of how people move, think, function, and interact with the world. Categories of disability are too often based solely on medical diagnoses, but they are more accurately understood through function, or how a person is able to navigate daily life. This article explores eight function-based categories of physical disability that better reflect how individuals interact with the world around them.


Core Categories of Disability (Function-Based)

1. Mobility Disabilities

People who have difficulty walking, standing, or moving.

• Full-time wheelchair users (non-ambulatory)
• Ambulatory wheelchair users (can walk short distances but use a chair for endurance, pain, or safety)
• Cane, walker, or brace users
• People with limited stamina or balance issues

Mobility is not all-or-nothing. Many people move between levels depending on the day.


2. Dynamic (Fluctuating) Disabilities

This is one of the most misunderstood categories.

These are conditions that:
• Change day to day (or hour to hour)
• Can appear “fine” one moment and disabling the next

Examples (without focusing on diagnosis):
• Fatigue that suddenly limits function
• Pain that varies in intensity
• Neurological symptoms that come and go

Function is not consistent, and ability is not predictable. This is where the idea of “you don’t look sick” can be challenged.


3. Invisible Disabilities

Disabilities that are not immediately apparent to others.

This includes:
• Chronic pain
• Cognitive impairments (brain fog)
• Sensory sensitivities
• Internal medical conditions

Visibility is not a measure of legitimacy. This category overlaps with many others, which is worth noting.


4. Sensory Disabilities

These affect how a person receives and processes sensory input.

• Vision impairments (partial to total blindness)
• Hearing impairments (hard of hearing to deaf)
• Sensory processing differences (over- or under-sensitivity)

The world is built for certain sensory norms, and deviations from those norms create barriers.


5. Cognitive and Neurological Disabilities

These affect thinking, memory, processing, or executive function.

• Difficulty concentrating or organizing tasks
• Memory gaps
• Slower processing speed
• Overwhelm in complex environments

Intelligence is not the same as cognitive accessibility.


6. Psychiatric and Emotional Disabilities

These impact mood, regulation, perception, and interaction.

• Conditions that affect emotional regulation
• Anxiety, mood instability, or trauma responses that affect daily living
• Social functioning challenges

These are real disabilities, not character flaws, and they have a physiological basis for occurring.


7. Chronic Illness as Disability

These are:
• Ongoing medical conditions that impact daily functioning
• Fatigue, pain, and treatment burden
• Unpredictable health cycles

Disability is often about energy limitation, not just physical limitations.


8. Temporary, Permanent, and Episodic Disabilities

Disabilities can be temporary, permanent, or episodic.

• Temporary (injury, surgery recovery)
• Permanent (expected to last for the duration of life)
• Episodic (comes and goes over time)

Many people will experience disability at some point in their lives. Laws such as the ADA and FMLA serve all three types of disabilities.


Overlapping Categories

A person may belong to multiple categories at once. These categories are not boxes, but lenses. Some people fit into just one category, but most people with disabilities fit into more than one. For example, someone may be an ambulatory wheelchair user with an invisible, dynamic disability and cognitive fatigue.


Examples That Challenge Diagnosis-Based Thinking

Take spina bifida as one example. It is often spoken of as though it represents a single, uniform experience, but the reality is far more varied. Some individuals with spina bifida have balance and mobility challenges but are able to walk independently. Others may walk with the support of canes, crutches, or a rollator. Still others rely on a wheelchair for mobility, either part-time or full-time.

Even within those groups, the experience can change depending on the day, the environment, and the physical demands placed on the body. A person who is able to walk short distances at home may require a wheelchair in larger spaces, not because they cannot walk at all, but because walking comes at a significant physical cost.

This same variability can be seen in multiple sclerosis. Some individuals experience long periods of stability with only mild symptoms, while others live with significant fatigue, mobility challenges, or cognitive changes that affect daily functioning. Symptoms may come and go, sometimes unpredictably, meaning that a person’s level of ability can shift not only over years, but from one day to the next. A person who appears fully capable in one moment may need substantial support in another.

Cerebral palsy offers another perspective. It is a lifelong condition, but the level of impact varies widely from person to person. Some individuals walk independently with minimal visible differences. Others use braces, walkers, or wheelchairs, and may also experience differences in coordination, speech, or muscle control. The condition itself does not change over time in the same way as multiple sclerosis, but the lived experience still differs greatly depending on the individual and their environment.

Autoimmune disease offers another powerful example of how disability cannot be defined by diagnosis alone. Although these conditions are often grouped together medically, the lived experience can vary widely, not only from one person to another, but within the same person over time.

Some individuals live with primarily invisible symptoms such as fatigue, joint pain, or internal inflammation. They may appear outwardly well while managing significant physical limitations beneath the surface. Others experience more visible effects, including mobility challenges that require the use of canes, braces, or wheelchairs, either occasionally or on a regular basis.

Many autoimmune conditions are also dynamic. Symptoms can fluctuate from day to day, with periods of relative stability followed by flares that significantly limit function. A person may be able to complete daily tasks one week and struggle with the same tasks the next. This unpredictability often shapes how they plan their lives, conserve energy, and interact with the world around them.

In some cases, autoimmune disease also affects cognitive function. Individuals may experience difficulty with memory, concentration, or processing information, particularly during periods of increased disease activity. These challenges are not always visible, but they can have a meaningful impact on daily life.

Taken together, autoimmune disease can involve invisible disability, mobility limitations, dynamic or fluctuating function, and cognitive challenges. The diagnosis itself does not determine the experience. The way the condition manifests, and how the individual navigates a world that is not always designed for that variability, is what defines disability in practice.

These examples illustrate a simple but often overlooked truth. The diagnosis may be the same, but the way a person experiences the world, and the way the world responds to them, can be entirely different.


Assistive Devices by Function

Mobility and Movement Support

Devices that help a person move safely, conserve energy, or reduce pain.

• Wheelchairs (manual, power, transport chairs)
• Mobility scooters
• Canes (standard, quad canes)
• Crutches (underarm, forearm)
• Walkers and rollators
• Gait trainers
• Knee scooters
• Transfer boards
• Stair lifts and platform lifts

These devices are not just about the inability to walk. They are often about endurance, safety, and energy conservation.


Positioning, Stability, and Physical Support

Devices that support joints, improve alignment, or prevent injury.

• Braces (knee, ankle-foot orthotics, wrist, back)
• Splints
• Orthotics (custom shoe inserts)
• Postural supports (seating systems, cushions)
• Compression garments (socks, sleeves, gloves)
• Abdominal binders

These are often used by people who may look fully mobile but still need support to function.


Daily Living and Self-Care Aids (ADLs)

Devices that help with everyday tasks like dressing, bathing, and hygiene.

• Sock aids
• Long-handled shoehorns
• Dressing sticks
• Button hooks and zipper pulls
• Reachers and grabbers
• Long-handled sponges
• Shower chairs and bath benches
• Raised toilet seats and grab bars
• Hoyer lifts
• Adaptive clothing

These tools support independence and dignity in very private, everyday activities.


Fine Motor and Hand Function Supports

Devices that help with grip, coordination, or hand strength.

• Built-up utensil handles
• Adaptive pens and pencils
• Jar openers
• Key turners
• Touchscreen styluses
• Writing supports and grips
• Breath-controlled wheelchair systems
• Eye-controlled communication devices

These are especially important for people with arthritis, neuropathy, tremors, or paralysis.


Cognitive and Executive Function Supports

Often overlooked, but incredibly important.

• Medication organizers and timed pill dispensers
• Reminder apps and alarms
• Visual schedules and planners
• Noise-canceling headphones
• Task management tools

Not all assistive devices are physical. Many support thinking, memory, and focus.


Communication Supports

For individuals who have difficulty speaking or processing language.

• Augmentative and Alternative Communication (AAC) devices
• Speech-generating devices
• Communication boards
• Text-to-speech apps
• Eye-controlled computer interfaces

These tools allow people to fully participate in conversations and decision-making.


Sensory Supports

Devices that help regulate sensory input.

• Noise-reducing headphones or earplugs
• Tinted glasses or light filters
• Weighted blankets or lap pads
• Fidget tools

These can make environments tolerable or accessible.


Environmental and Home Modifications

Changes to surroundings that function as assistive supports.

• Ramps
• Widened doorways
• Lever-style door handles
• Smart home devices (voice-controlled lights, locks)
• Adjustable beds
• Lifting devices
• Home elevators or stair lifts
• Lift chairs

Sometimes the device is not something a person wears or carries, but something built into their environment.


Medical Supports That Shape Daily Life

Some assistive supports are medical in nature but still shape how a person moves through the world. Oxygen therapy, for example, allows individuals with respiratory conditions to maintain adequate oxygen levels, but it also affects mobility, endurance, and daily routines. A person may be able to walk short distances without support but require portable oxygen for longer activities, illustrating again how disability is defined not just by diagnosis, but by interaction with the environment.


Accessibility and the Role of the Environment

Assistive devices are not symbols of limitation. They are tools of access. Each one reflects a specific way a person interacts with the world, adapts to it, and claims independence within it.

When a person cannot climb stairs, whether due to using a wheelchair or because of limited balance and mobility, and they are unable to enter a building that has only stairs, it is not the wheelchair or the person’s body that prevents participation. It is the lack of accessibility. The barrier is not the disability. The barrier is the environment.

With access, participation becomes possible. Without it, exclusion is the outcome.


Conclusion

Disability is often treated as something that can be neatly defined by a diagnosis, but as we have seen, the reality is far more complex. The same condition can result in very different experiences depending on how it affects movement, energy, cognition, and daily function. When we begin to understand disability in terms of a variety of experiences rather than just labels, our perspective shifts.

Behind every category, every device, and every label is a person navigating daily life in ways that are often unseen by others. Some adaptations are visible, while others are not. Some needs are constant, while others change without warning. None of these differences make a person less capable of living a full and meaningful life.

When barriers exist, they limit participation. When access is built in, those same individuals can engage, contribute, and thrive. When we understand disability in terms of lived experiences, we move from judgment to awareness, and from awareness to meaningful inclusion.


Accessibility Is Not a Privilege – Jan Mariet’s A Day in the Life

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

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.

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.

Living with Invisible Losses: Finding Meaning in Chronic Illness

Image of a person fading away into the background, and faint words saying, "The quiet grief, the missed moments, the life that used to be yours..."

When you live with a chronic illness, there are so many things you wish you didn’t have to face, yet they become part of your life.

There is the loneliness of watching the world move forward while you stand still. Friends make plans, families gather, and life goes on, even when you can’t take part.

There is the heartbreak of memories that belong to the person you used to be. You remember the energy, the freedom, and the ease of doing simple things without thinking twice.

There is the pain of not being able to show up for the people you love in the ways you once could. You miss birthdays, dinners, trips, and quiet everyday moments that used to come easily.

There is the grief of living with a loss no one else can see. The world doesn’t recognize this kind of pain, but it lives inside you every day.

There is the ache of missing out on the small, ordinary moments that most people take for granted. Even something as simple as going for a walk, running errands, or sharing a meal can feel out of reach.

And there is the loss of freedom. The freedom to wake up and simply do what you want, without calculating pain, fatigue, or consequences.

These are the unseen losses that shape your world in quiet, lasting ways; changes that settle deep within you, reinventing how you see yourself and the world around you. Acknowledging them doesn’t mean giving up. It means honoring the strength it takes to live a life that looks different, yet still holds meaning, love, and hope.


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

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

How People Respond to Your Chronic Illness – Jan Mariet’s A Day in the Life


Our Resilient Hearts is more than a collection of stories; it’s a journey toward hope, healing, and hard-earned strength. Author Jan Mariet weaves together powerful personal essays, thought-provoking prompts, and inspiring affirmations that help readers reflect on their own resilience and reclaim meaning in the face of adversity. Our Resilient Hearts by Jan Mariet is available in paperback on Amazon.

Our Resilient Hearts: Thriving Beyond Chronic Illness: Mariet, Jan: 9798315554523: Amazon.com: Books


Have you felt invisible losses too? Leave a comment and let’s create a space where our stories remind others they’re not alone.

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