Ambulatory Wheelchair Users: What There Is To Know

When you see someone in a wheelchair, many of us assume that the person in the wheelchair cannot walk at all. But for some people, like ambulatory wheelchair users, that actually isn’t the case. There are many reasons why a person may be an ambulatory wheelchair user, or use other devices designed to improve the freedoms and quality of life. Wheelchairs and other aids are not exclusively for individuals who have paraplegia or absent limbs, they are also used by people with lower body injuries, unstable joints, chronic pain, debilitating fatigue, unsteady balance, or postural orthostatic issues including frequent fainting.

In this article, we will discuss some of the key topics associated with Ambulatory Wheelchair Users. This includes: 

• Who is an Ambulatory Wheelchair User.?

• Reasons for an Ambulatory Wheelchair Use ?

• Challenges Faced by Ambulatory Wheelchair Users

• Types of Assistive Devices 

Having a good understanding of the topic as well as the needs and challenges faced by this group of people is important for creating a truly inclusive society. Let's move on.

Who is An Ambulatory Wheelchair User?

An ambulatory wheelchair user is someone who uses a wheelchair but is also able to walk to some degree. The term "ambulatory" comes from the Latin word "ambulare," meaning to walk. This means their use of the wheelchair is not constant and may be used as a tool to manage a disability, rather than being a complete substitute for walking.

The use of a wheelchair for an ambulatory person is a personal choice based on their medical needs and physical limitations. The degree to which they can walk varies greatly from person to person and may fluctuate from day to day or even hour to hour.

The Stigma and Misconceptions

Ambulatory wheelchair users face a significant number of misconceptions due to a limited public understanding of disability. When a person is seen standing up from their wheelchair or taking a few steps, they are often wrongly accused of "faking" their disability. This judgment and skepticism are deeply hurtful and invalidate their genuine health struggles. The common assumption that a person in a wheelchair is completely unable to walk is a major source of stigma and judgment. 

This misconception is rooted in a flawed understanding of what disability looks like. It wrongly assumes that all disabilities are static, visible, and cause a total loss of function. The reality is that many disabilities are invisible and have fluctuating symptoms. An individual might be able to walk a few steps to use a bathroom or grab a small item but could not walk across a shopping mall or a park without risking severe pain, injury, or a total physical crash.

Now that we have a better understanding of who an Ambulatory Wheelchair user is, let's move ahead and look at some of the major reasons for part-time Wheelchair use.

Reasons for Ambulatory Wheelchair Use

Part-time Wheelchair Users can walk to some degree, but they use a wheelchair as a vital tool to navigate the world and manage their health. Their reasons are often complex and deeply personal, rooted in a need to balance their abilities with their limitations.

Here are some of the main reasons for using an ambulatory wheelchair:

• Preventative Use: Using a wheelchair can be a preventative measure to avoid worsening symptoms or triggering a flare-up of a chronic illness. For example, a person with a chronic illness might use a wheelchair for a long outing to ensure they have enough energy to enjoy it without being laid up for days afterward.

• Temporary or Fluctuating Conditions: Some people use a wheelchair temporarily while recovering from surgery or a severe injury. For others, the need for a wheelchair fluctuates. They may be able to walk on good days but require the chair on bad days when their symptoms flare up.

• Chronic Pain: Many chronic conditions, such as fibromyalgia, arthritis, or chronic regional pain syndrome (CRPS), cause severe pain that is made worse by walking or standing. A wheelchair allows the person to get around without triggering a pain flare, which can be debilitating and long-lasting.

• Intense Fatigue: Conditions like Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), multiple sclerosis (MS), and Long COVID are characterized by extreme, debilitating fatigue that is not relieved by rest. Walking can be incredibly draining and lead to post-exertional malaise (PEM), a worsening of symptoms that can last for days or weeks after minimal exertion. A wheelchair helps to prevent this "payback," allowing the individual to participate in activities they would otherwise have to miss.

• Balance Issues and Dizziness: Dizziness, lightheadedness, or a sensation of unsteadiness can be caused by a range of conditions, including dysautonomia (e.g., Postural Orthostatic Tachycardia Syndrome or POTS). Using a wheelchair can help prevent fainting spells or falls by providing a safe way to move around.

• Unstable Joints and Muscle Weakness: Conditions like Ehlers-Danlos Syndrome (EDS) can cause unstable joints that are prone to dislocations. Muscle weakness from various illnesses or injuries can also make walking and standing difficult and dangerous. A wheelchair provides stability and support, preventing falls and injuries.

A part-time Wheelchair is not a sign of giving up, but rather a tool for gaining independence. It allows people with a variety of conditions to manage their symptoms, conserve energy, and participate more fully in their daily lives.

Challenges faced 

Ambulatory wheelchair users face a unique and often misunderstood set of challenges that are distinct from those experienced by individuals who are completely unable to walk. These difficulties stem from a combination of the universal physical obstacles all wheelchair users encounter and a profound layer of social and psychological hurdles related to the fluctuating nature of their disability.

Physical and Accessibility Challenges: While these challenges are common for all wheelchair users, they can be particularly pronounced for ambulatory users who may have fluctuating abilities.

Inaccessible Environments: This is a primary challenge. Many public and private spaces are not designed with wheelchairs in mind. This includes:

• Lack of ramps or elevators in older buildings.

• Narrow doorways and hallways.

• Absence of accessible restrooms.

• Sidewalks and pathways that are poorly maintained, with cracks, potholes, or steep curbs.

Navigating Public Transportation: Public transit can be difficult to access and use. Not all buses or trains have working ramps or designated spaces for wheelchairs, making travel a logistical challenge.

Physical Strain: Using a manual wheelchair can be physically demanding, leading to hand injuries, blisters, and strains in the upper body. For an ambulatory user who is already dealing with fatigue or chronic pain, this can be an additional burden.

Health Concerns: Extended periods of sitting can lead to pressure sores (also known as bed sores) and other complications. Ambulatory users must be diligent about taking breaks, shifting their weight, and using a proper cushion to prevent these issues.

Social and Psychological Challenges: These are often the most difficult and frustrating challenges for ambulatory wheelchair users.

Discrimination and Judgment: The most significant challenge is the constant judgment and harassment they face when they are seen standing up or walking. People often assume they are "faking" their disability or using the wheelchair for convenience, leading to hurtful comments like:

• "You don't look sick."

•  "You're too young to be in a wheelchair."

•  "Why are you taking a disabled parking spot when you can walk?"

"Faking It" Accusations: Because their disability is often "invisible" when they are not in the chair, they are frequently accused of being a fraud. This can lead to confrontations with strangers and a feeling of having to constantly justify their medical needs.

Internalized Ableism and Self-Doubt: The constant questioning and judgment from others can lead to self-doubt. An ambulatory user may start to question their own need for the wheelchair, even when their body is telling them that they need it. This can lead to them pushing themselves too hard, resulting in a worsening of their condition and a subsequent symptom flare-up.

Lack of Understanding from Medical Professionals: In some cases, even medical professionals may not fully understand or validate the need for a wheelchair for a fluctuating condition. This can make it difficult to get a proper prescription for a mobility aid or to receive appropriate care.

Social Isolation: The fear of judgment and the physical difficulty of navigating inaccessible spaces can lead to social isolation. Ambulatory users may choose to stay home rather than face the possibility of a confrontation or a physically exhausting outing.

Assistive Devices used by Ambulatory Wheelchair Users 

Part-time wheelchair users often employ a range of assistive devices to manage their fluctuating conditions and maximize their independence. Their use of a wheelchair is just one part of a broader strategy that may involve other mobility aids and adaptive equipment. The combination of devices they use can vary from day to day based on their energy levels, pain, and symptoms.

Here are some of the common assistive devices used by ambulatory wheelchair users:

Mobility Aids

These devices are used for a variety of tasks, from short walks to managing balance and preventing falls.

• Canes and Walking Sticks: These are often used for light support, especially on "better" days or for short distances inside the home. They help with balance and provide a point of contact for stability. Some canes even have a built-in seat, allowing the user to rest quickly when fatigue or dizziness strikes.

• Walkers and Rollators: Walkers provide more stability than a cane and are particularly useful for individuals who need more support to maintain their balance. Rollators are walkers with wheels, which can be easier to use for those with low energy, and often include a seat and a basket for carrying items.

• Crutches: While typically associated with short-term injuries, forearm crutches are sometimes used by individuals with long-term conditions. They provide more support than a cane but are less cumbersome than a full walker, making them useful for navigating tight spaces.

• Mobility Scooters: For those who need to travel longer distances but can't use a wheelchair due to upper-body weakness or other factors, a mobility scooter can be a great option. They provide power assistance, which helps conserve energy and reduces physical strain.

• Orthotics and Braces: Devices like ankle-foot orthotics (AFOs) or braces can be used to stabilize joints, support weak muscles, and prevent foot drop, which can be a common symptom of neurological conditions.

Adaptive Equipment and Home Modifications

Beyond mobility, ambulatory wheelchair users may use other devices to manage daily tasks and make their environment more accessible.

• Reachers/Grabbers: These tools help a person retrieve items from a high shelf or the floor without having to stand up or bend over, conserving energy and preventing strain.

• Transfer Aids: Devices like transfer boards or grab bar can assist with moving from a wheelchair to a bed, a chair, or the toilet, which can be a difficult task for someone with limited strength or balance.

• Raised Toilet Seats and Shower Chairs: These items make it easier and safer to use the bathroom, reducing the risk of falls and making personal hygiene less physically demanding.

• Ramps and Handrails: Portable ramps can be used to navigate small steps or curbs, and handrails are often installed in homes to provide support when walking.

In essence, the choice of assistive devices for a user is a highly individualized process. They often combine multiple tools to create a personalized system that allows them to manage their symptoms, maximize their independence, and live a more comfortable and active life.

How to Be a Better Ally

Being a good ally to part-time wheelchair users means shifting your perspective and challenging your own assumptions. Here are a few simple ways to help:

• Avoid Making Assumptions: If you see someone using a wheelchair, don't assume you know their story. Their need for a mobility aid is valid, regardless of whether or not they can walk.

• Don't Judge: Refrain from making comments or giving questioning looks if you see a person in a wheelchair standing up. Remember that a wheelchair is a tool, not a prison.

• Respect Their Space: Do not touch or move a person's wheelchair without their permission. Their wheelchair is an extension of their personal space.

• Focus on Accessibility: Advocate for accessible public spaces and transportation. These features are not just for full-time wheelchair users but are essential for anyone who needs a mobility aid to participate in society.

Ultimately, the journey of ambulatory wheelchair users is a testament to resilience, adaptability, and the pursuit of independence. By understanding the unique challenges and embracing a holistic approach to mobility, we can create a more inclusive world that supports the diverse needs of this community.

We believe that by working together, we can empower individuals to live their lives to the fullest, regardless of their mobility challenges.

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