Disability is often thought of as a permanent, unchanging state. Once someone acquires a disability, it is assumed that they will have it for life. However, the reality is much more complex. Disability status can and does change over time for many people. This article explores the fluid nature of disability and what it means for disabled individuals.
What is disability?
First, it is important to understand what constitutes a disability. The Americans with Disabilities Act (ADA) defines disability as a physical or mental impairment that substantially limits one or more major life activities. This includes things like seeing, hearing, walking, learning, communicating, and taking care of oneself. Disabilities can be visible or invisible, permanent or temporary.
Some examples of common disabilities include:
- Mobility impairments such as paralysis, amputation, or cerebral palsy
- Sensory disabilities like blindness, low vision, or deafness
- Chronic illnesses like diabetes, cancer, or autoimmune disorders
- Neurological conditions like epilepsy, stroke, or multiple sclerosis
- Mental health disabilities like depression, anxiety, PTSD
- Learning disabilities like ADHD, dyslexia, or intellectual disabilities
It is estimated that 61 million adults in the US — nearly 1 in 4 — have some type of disability. Disability transcends lines of age, gender, race, ethnicity, education, and income level. Anyone can acquire a disability at any point in their life.
Disability is dynamic, not static
Often, people think of disability as a fixed, permanent state. Once someone uses a wheelchair, for example, it is assumed they will always use one. But in reality, disability status fluctuates over time for most people.
Some key reasons disability status changes include:
- Natural recovery: Many disabilities or health conditions are temporary in nature. The body and brain have a remarkable capacity to heal and adapt. Someone may fully or partially recover from an injury, illness, or mental health episode. They may regain function that was lost.
- Effective treatment: Advances in modern medicine mean many disabilities can be successfully managed or treated. A person with epilepsy, for example, may have minimal seizures and side effects with proper medication and lifestyle adjustments. Their disability status improves with effective treatment.
- Adaptive equipment: Assistive devices like wheelchairs, hearing aids, or communication tools can minimize functional limitations from a disability. While the underlying condition remains, the life limitations are significantly reduced with adaptive equipment and technologies.
- Changing environments: Disability occurs in context. If the environment around a person changes, their level of disability may change as well. Improved physical accessibility in buildings, accommodation and flexibility at school or work, inclusive policies, and social support can all decrease limitations from impairment.
- Natural progression: Some disabilities get progressively worse or better over time independent of outside factors. A condition like multiple sclerosis, for example, may fluctuate between periods of remission and relapse. Arthritis tends to worsen gradually with age.
In one major longitudinal study tracking disability, researchers found nearly half of participants had a change in disability status over a 2-year period. Rates of disability onset and recovery were higher than expected. Disability is clearly far more dynamic than commonly believed.
Why disability changes matter
The fact that disability is usually not a permanent state has important implications for disabled individuals. Some key reasons it matters include:
- Accommodation needs may change. If disability fluctuates, accommodation needs will as well. Someone with an episodic condition like lupus may need flexible work arrangements during flare-ups. Communication access that was once helpful may become unnecessary if hearing or vision improve.
- Social dynamics shift. People make assumptions based on visible disability. As ability changes, social attitudes towards a person may change as well for better or worse. Navigating these shifting social waters can prove challenging.
- Identity evolves. Disability plays an important role in self-identity for many people, shaping their self-image and worldview. As disability status changes, identity often evolves in tandem, requiring adaptation.
- Resources must be flexible. Government programs, insurance coverage, and disability benefits often do not accommodate fluctuating degrees of disability well. More flexibility is needed to prevent loss of essential services and costs.
- Planning is difficult. Uncertainty around future ability level makes planning for housing, transportation, employment, finances, and healthcare challenging for disabled individuals trying to build stable lives.
In many ways, the systems and structures around disability management have not caught up to the reality of dynamic disability for most people. More responsive, flexible approaches are needed.
Some disabilities are lifelong
While disability is often dynamic, it is important to note some disabilities are permanent and unchanging. Examples include:
- Blindness or vision loss not correctable with glasses, contacts, or surgery
- Deafness that cannot be significantly improved with hearing aids or implants
- Amputation of a limb
- Intellectual or developmental disabilities like Down syndrome
- Some progressive and chronic illnesses like ALS or Alzheimer’s disease
- Certain severe neurological or mobility impairments such as paraplegia or cerebral palsy
For people with lifelong, unchanging disabilities, the implications are different. These individuals do not experience fluctuation in status and ability. Identity and self-image remain more constant. Planning and supports can focus on long-term arrangements rather than shifting needs.
However, even for permanent profound disabilities, the context matters greatly. Environmental factors, technology, social support, and policy accommodations can moderate the impact of impairment. While the disability itself remains static, the opportunities and limitations imposed by society and communities continue to evolve.
Tracking disability trends over time
Given the dynamic nature of disability, it can be difficult to accurately track prevalence and trends over time. Some patterns clearly emerge:
- Rates of disability are increasing globally as populations age.
- More children with disabilities are living to adulthood thanks to modern medicine and support.
- Traumatic injuries leading to disability are declining in places with improved public health and safety measures.
- Environmental toxins and pollutants may contribute to rising rates of certain disabilities like cancer, autoimmune illnesses, or cognitive decline.
However, pinpointing exact numbers and future projections is challenging. This leads to inadequate planning and resource allocation for disabled populations. More responsive data systems are needed to track the fluid nature of disability across society.
Individual experiences
While broad societal patterns matter, it is also important to listen to individual voices reflecting on the experience of changing disability over a lifetime. Here are some examples of personal perspectives:
Sarah: multiple sclerosis
“I was diagnosed with MS fifteen years ago at age 25 after experiencing numbness and vision problems. At first, it was intermittent flare-ups where symptoms would worsen for a time then improve. But over the years it has progressed to where I now use a wheelchair most days. The hardest part is mourning abilities as they fade. Each decline requires grieving and adaptation. My disability status keeps changing against my will.”
Frank: spinal cord injury
“I was paralyzed from the waist down in a snowboarding accident when I was 19. The transition from able-bodied to using a wheelchair was difficult. But after 25 years living as a paraplegic, my disability now seems normal to me. My abilities have actually grown in many ways compared to right after my injury as I learned to adapt. Though my physical disability is permanent, my quality of life keeps improving.”
Alicia: depression and anxiety
“I struggle with depression, anxiety, and some OCD tendencies which leads to periods of severe limitation. But with therapy and medication, I can usually manage reasonably well. However, when big life stressors hit like divorce or job loss, my symptoms overwhelm me again. The hardest part is the uncertainty – I never know when the next bad episode might hit. My disability level seems to ebb and flow with life stresses.”
Juan: diabetes
“As a diabetic, the severity of my disability depends greatly on how well I manage my blood sugar levels. With diet, exercise, and medication compliance, I can keep symptoms at bay and limitations minor. But when I indulge in sugary foods or slip into unhealthy patterns, vision issues, nerve pain, and fatigue restrict me much more. It requires constant discipline to maintain stability and control my changing degree of disability.”
These stories illustrate just some of the diverse experiences of disability fluctuation across different conditions and individuals. The unifying theme is change over time – sometimes gradual, sometimes sudden, but rarely static.
Supporting individuals through changes
Given the dynamic nature of disability, how can society support individuals going through changes in ability and associated life disruption? Some strategies include:
- Offering short-term disability benefits and leave time to help people through temporary disabilities or health crises.
- Having regular check-ins and updates after a major health change rather than a one-time assessment.
- Providing counselors or peer support networks for those mourning lost abilities and adjusting to new limitations.
- Making workplace, educational, and housing accommodations easier to access flexibly as needs arise rather than only once.
- Creating emergency funds for disability-related needs not covered by insurance like equipment, home modification, caretakers, etc.
- Increasing public understanding that disability fluctuates and is usually temporary for most.
- Training healthcare providers in the psychosocial aspects and identity changes impacted by shifts in disability status.
With understanding and the right supports, changes in disability can be navigated successfully. The journey may be challenging, but it does not have to be faced alone. Communities can make space for all the ways human abilities ebb and flow over a lifetime.
Conclusion
While medicine and media often portray disability as fixed and permanent, the reality for most people is far more dynamic. Disability status tends to change over time through natural recovery, treatment effects, assistive technology, shifting environments and life circumstances. These fluctuations can profoundly impact identity, daily living, resources needed, and more. Some disabilities are lifelong, but most follow far more variable trajectories. Understanding this fluid nature of disability helps build a more responsive, inclusive society that values all people at every stage of capability and health.