Transformation is rarely gentle. It is an experience both familiar and unknown, much like standing at the ocean’s edge. There is a rhythm, a back-and-forth, yet the way forward is often elusive.
In writing “Echoes in the Shatter“, I was drawn to the imagery of waves—breaking, mending, shifting. These movements reflect how change is experienced: not all at once, but in fragments, echoes, and as an ongoing process.
Echoes in the Shatter
The sky wears its mourning in layered hues, Gray light bruises to black—an endless ruse.
A roar shakes the bones of silence to fray, Waves weaving blue and black in their sway.
The rocks, jagged, like truths left unsaid, Pierce through the foam where dreams have bled. I stand, or am I a shadow here? The ocean unravels; I disappear.
The wave breaks— On rock. On air. A shatter as ancient as time’s decree. Each fragment a whisper, a truth unbound, Gray to black, to blue profound.
Am I the storm, or the calm it denies? A howl that divides, or what division ties? The wave breaks, Splinter into shards the tide won’t deny.
The sky wears its mourning in layered hues, Gray light bruises to black—an endless ruse.
The ocean unravels; all disappears.
The wave breaks— On rock. On air. On time. A shatter that hums the horizon’s rhyme.
Finding Meaning in the Layers
“Echoes in the Shatter“ is about transformation, especially when it comes to identity and change. A line that resonates is:
“The sky wears its mourning in layered hues, Gray light bruises to black—an endless ruse,” it suggests complexity rather than sadness.
The sky reflects how change isn’t just one emotion, but a mix of resistance, adaptation, and release.
The Dual Nature of Challenges
The waves breaking “on rock, on air” show how challenges vary. Some are solid and unmovable, others are subtle but still there. Identity, particularly in the context of disability, is shaped by both struggle and growth (Goodley et al., 2019).
Tension and Reflection
“Am I the storm, or the calm it denies?” explores the balance between action and reflection. The storm is force and upheaval, while the calm invites quiet contemplation. Margaret Price’s “crip spacetime” shows how transformation doesn’t follow a straight line—it’s a messy, non-linear experience (Price, 2024).
Dismantling and Renewal
“The ocean unravels; all disappears” hints at how transformation is both destruction and creation. It’s about making space for what comes next.
“Echoes in the Shatter” reflects on those in-between moments where breaking and becoming meet. The rhythm of the ocean remains steady, but its form keeps changing, just like life.
The echoes of change linger, like the fading sound of waves—a transformation still unfolding. Each wave represents ongoing change. What is broken doesn’t disappear, it shifts and creates space for growth.
Transformation isn’t a one-time thing but a constant process. The past always leaves pieces behind, but they help shape what’s coming next. The power lies in the tension between what is lost and what is found.
To rebuild, destruction is often necessary. Through this, resilience is forged—a reminder that loss makes space for renewal. The poem serves as a reminder that even in loss, there is rebirth, offering the quiet promise that transformation, though difficult, ultimately leads to something new.
References
Goodley, D., Lawthom, R., Liddiard, K., & Runswick-Cole, K. (2019). Key concerns for critical disability studies. International Journal of Disability and Social Justice, 1(1), 27-49.
Price, M. (2024). Crip spacetime: Access, failure, and accountability in academic life. Duke University Press.
Garland-Thomson, R. (2020). Becoming disabled: Narratives of transformation and identity. Oxford University Press.
There’s a tension that arises when your voice meets silence or when you’re misunderstood. It doesn’t just pass by—it reaches inward, testing your sense of worth and belonging.
Often sparked by others’ biases or doubts, this feeling can lead to a choice: quiet your voice or hold it steady. In these moments, self-trust becomes an anchor, something steady and unbreakable, free from the need for validation. This piece is, in part, a response to Voice Unbound: Rediscovering and Reclaiming My True Voice, a post from Wiley’s Walk that explores the deep impact of finding and trusting one’s voice even when it stands alone.
For those who know what it feels like to be unseen or misinterpreted, this “voice unbound” is as vital as it is freeing. It doesn’t need to be understood by everyone to be worth holding onto. The journey to reclaim it is subtle and complex—a quiet process of building the inner resolve to keep showing up fully, whether or not the world is ready to meet you there.
The experience of feeling misunderstood is not unique. Disability advocate Keah Brown writes about it in The Pretty One (2019), where she shares how her self-worth isn’t built on others’ approval but on embracing her own life fully. For Brown, strength isn’t about others seeing her but about trusting her own truth, even if the world responds with indifference. Her self-worth becomes a steady, inner resolve to keep moving forward, regardless of the assumptions or misunderstandings surrounding her (Brown, 2019).
A Quiet Resolve
Strength often arrives quietly, without grand gestures. Sometimes, it’s simply the resolve to stay grounded in what feels true, even when it goes unseen by others.
Those navigating hidden challenges know this well. For people with disabilities, the world often fails to make space, and unspoken assumptions can cloud even the clearest intentions. Yet in these moments, a quiet resilience emerges—a strength that holds firm, independent of others’ acknowledgment.
This resolve is echoed in Judy Heumann’s reflections in Being Heumann. A lifelong advocate for disability rights, Judy Heumann describes purpose not as an external achievement but as something grounded in connection and inclusion.
Her purpose, she notes, didn’t depend on others’ recognition; it was anchored in her own values and commitment to others. This kind of purpose isn’t about proving anything to anyone else—it’s simply something she chose to live out, quietly and fully (Heumann & Joiner, 2020).
Redefining Purpose Beyond Productivity
For many, purpose doesn’t come from measurable success or productivity. Purpose often blooms in quieter spaces—in the depth of a relationship, in a creative moment, or in sharing something meaningful. For people living with chronic illness and other disabilities, purpose may look nothing like society’s traditional expectations, yet it’s no less real.
All the Weight of Our Dreams, edited by Lydia X. Z. Brown, redefines purpose by challenging narrow ideas of worth, presenting it as something that arises from fully and freely living one’s own story. Here, purpose is about living authentically rather than pursuing external achievements (Brown, 2017).
Judy Heumann, too, describes purpose in a way that isn’t bound by others’ expectations. For her, purpose is about being part of something larger than herself, about belonging to a community of shared values and progress. It is about connection and impact, not recognition. Heumann shows that purpose can be something simple yet deeply fulfilling, a sense of self that doesn’t need external approval to feel complete.
Finding Voice Through Connection
Sometimes, the power of a voice isn’t in how loudly it stands alone but in how it resonates with others. For those who often feel unseen or misinterpreted, finding a space where others truly understand can be grounding. In these shared spaces, voices don’t just exist in isolation; they connect, grow, and create something that transcends individual experience.
In her memoir, Haben: The Deafblind Woman Who Conquered Harvard Law, Haben Girma reflects on the profound role of meaningful connections in shaping her journey. Born deafblind, Girma describes how finding a community that understood her experiences gave her a vital foundation—a place where her voice was embraced and respected (Girma, 2019).
Through these connections, she illustrates how resilience often grows quietly, rooted in empathy and shared experiences. Here, listening becomes more than just hearing; it is an act of respect, a where each voice finds value, even when it’s subtle (Girma, 2019).
In these spaces, listening is the foundation. It isn’t about trying to be heard or seen; it’s about connecting deeply. Listening—both to ourselves and to each other—creates resilience, grounding each person in an empathy that doesn’t need outside approval.
When voices are silenced or identities are questioned, reclaiming that voice requires personal courage. It is a quiet, resolute choice—one that’s not about seeking approval but about staying true to oneself despite outside opinions. Trusting in one’s own voice isn’t meant to change others’ minds or shift their perceptions. Rather, it’s about honoring a truth that stands on its own, whether or not others understand it.
In Being Heumann, Judy Heumann shows the strength of her inner resolve. Reclaiming her voice wasn’t about fitting in or changing how others saw her. It was about staying true to a purpose that didn’t need outside approval. Her story reminds us that self-trust can be quiet yet unwavering, a decision held firmly without expectation.
Reflecting on this, one question remains: what does it really mean to stay true to ourselves and speak up, even when others may not fully hear us? Maybe it’s about trusting, listening, and sharing anyway—understanding that every voice has weight, matters, even if it’s only partly understood.
References
Brown, K. (2019). The Pretty One: On Life, Pop Culture, Disability, and Other Reasons to Fall in Love with Me. Atria Books.
Brown, L. X. Z. (Ed.). (2017). All the Weight of Our Dreams: On Living Racialized Autism. DragonBee Press.
Girma, H. (2019). Haben: The Deafblind Woman Who Conquered Harvard Law. Twelve.
Heumann, J., & Joiner, K. (2020). Being Heumann: An Unrepentant Memoir of a Disability Rights Activist. Beacon Press.
Quinn leaned her walking poles against the wall by their table, the faint scrape of rubber tips on brick cutting through the silence. It was a gesture she had performed many times before—familiar, grounding, and subtly marking her space.
As the poles settled into place, so did Quinn. She adjusted the chair with a small shift and folded herself into the rhythm of the restaurant around her. The hum of conversation and clatter of dishes swirled in the background. The occasional glance lingered, a quiet reminder of the way others sometimes regarded her.
Across from her, Stephen scanned the menu, his gaze relaxed and thoughtful. “Everything looks great,” he said. “What are you leaning toward?”
Quinn glanced at the pasta section, her thoughts briefly interrupted by the rhythmic clinking of silverware. “Maybe pasta. I’m not sure yet. What about you?”
“Steak, as always.” Stephen chuckled, the familiarity of his choice lighting up his face. “Guess it’s become a tradition at this point.”
She nodded, her attention briefly drifting to a nearby table where she felt the faint pull of someone’s gaze. Instead of looking away, she held Stephen’s eyes, grounding herself in their shared space.
Stephen tapped the menu, his finger drawing her focus back. “Do you want to split an appetizer? Bruschetta?”
“Perfect,” she replied.
The server arrived with the hurried pace of the evening rush. He greeted Stephen with a smile, his gaze briefly skimming past Quinn before returning to him. It was a small gesture, one Quinn recognized—a quiet shift that subtly positioned her on the periphery.
It was familiar, almost automatic—a signal that she wasn’t the one being directly acknowledged, a subtle reminder of the spaces others sometimes assume she occupies. However, Quinn had learned to read these moments without letting them define her. She met the server’s eyes and offered a composed nod.
“You asked what we would like to drink? I’ll have water with extra ice, please.” Her voice was steady, unshaken. In that instant, she recognized the shift—an acknowledgment of her, not just her words. The waiter held her gaze before he nodded and moved on, his smile polite, his attention already shifting elsewhere.
In that brief exchange, Quinn realized she had done it again—asserted her presence. It was a decision she made often and freely, rooted in self-assurance. Amanda Leduc (2020) describes the action of “claiming space”—asserting one’s place without seeking permission, of being present on one’s own terms.
For Quinn, it wasn’t about waiting for others to make room for her. It was about choosing her presence, firmly planted, regardless of who noticed. Stephen’s small nod affirmed that unspoken understanding. Stephen wasn’t there to make space for her; he was there to share the space they both occupied. Together, they settled into the moment, the occasional glances from nearby tables fading into the background.
That night, Quinn noticed a subtle change in how others regarded her. The glances that once felt burdened with judgment now seemed lighter, almost curious. It was as though they were starting to see her not as an outsider, but as someone whose place had quietly shifted. She no longer felt the need to navigate their gaze. Instead, she moved through it, with a quiet confidence.
Her brief exchange with the server lingered in her mind, a reminder that asserting her presence was as much a choice as it was an act. In that moment, Quinn felt the quiet strength of her own presence—occupying space without apology. As Tom Shakespeare (2022) wrote, it wasn’t about being “let in,” but about showing up and occupying space on her own terms.
As they walked out of the restaurant, Quinn felt a wave of confidence settle within her. She had claimed her place, quietly asserting her presence without needing affirmation. With each step, a deeper understanding took root, reminding her that her presence was enough in itself.
In that moment, Quinn had claimed her place—not just at the table, but in a world still learning to make room for every presence. How many others are still waiting for the chance to stand firmly in their own space?
References
Garland-Thomson, R. (2009). Staring: How We Look. Oxford University Press.
Leduc, A. (2020). Disfigured: On Fairy Tales, Disability, and Making Space. Coach House Books.
Shakespeare, T. (2022). Disability: The Basics. Routledge.
Wong, A. (Ed.). (2020). Disability Visibility: First-Person Stories from the Twenty-First Century. Vintage.
The sting of disbelief still lingers. I recall standing there, motionless, as my teacher’s harsh words pierced the classroom silence: “Kerry, you couldn’t have written this.”
That single sentence felt like everything unraveling at once—a complete dismissal of all I had invested. Hours of effort, each word carefully chosen and every sentence meticulously crafted, erased in an instant. The accusation hung thick in the air, wrapping doubt around my words as though they belonged to someone else.
The classroom lights buzzed overhead, their cold fluorescence casting a harsh glare. The air smelled faintly of chalk and anxiety, making me feel isolated despite the crowded room. My classmates’ eyes darted down, pencils fidgeting against notebooks. No one met my gaze as the teacher’s words echoed, an accusation branded onto my spirit. My mind raced to defend myself, but the words froze, stuck somewhere between disbelief and shame.
Maybe my words didn’t sound like mine at all.
This wasn’t just about the writing itself; it was about my voice, the authenticity of each thought I had painstakingly put down. The piece had been a reflection of my work, now suddenly that effort felt hollow. Every chosen phrase and meticulous revision had been stripped of meaning by a single judgment. The classroom air felt heavy, tight with silence where trust or encouragement might have been.
Back at home, the atmosphere shifted as my family enveloped me in warmth and reassurance. “You know your own work. Don’t let someone else’s doubt drown out your voice,” they reminded me. Their support steadied me, affirming that the effort and every word was mine. Yet, even their encouragement couldn’t fill the hollow absence left by that one missing ally in the room. I had needed someone to stand beside me, to see the words as I had, to trust the voice behind them.
Gradually, the sting of accusation and rejection faded, and was replaced by a quiet question: Could I trust this voice, my voice, even if no one else did? This question lingered, urging me to understand what it truly means to believe in myself. Trust doesn’t demand attention; it appears when you choose to keep going, even when it feels futile and doubt is near.
Each time I picked up my pen and wrote another line, my voice grew stronger, steadier, like roots finding their way through stone. Slowly, the voice I had almost abandoned began to feel like my own again. In reclaiming it, I found a new purpose: to support others as they find their voices too.
I began to understand that some of the most powerful choices are quiet ones—to be present, to listen, to honor someone’s story without judgment. It’s about seeing others clearly, even when they can’t yet see themselves. Imagine a friend sharing a story, something fragile and untested.
In that moment, you have a choice: to listen fully or let it pass. Listening deeply, without rushing to respond, tells them: Your voice matters. Or think of someone passed over because they don’t fit the mold. Recognizing their worth becomes an act of quiet trust.
These small choices create something lasting—a foundation of trust and belief, built one quiet moment at a time. It doesn’t need to be seen; it asks only that we show up, listen, and help others learn to trust their own voices.
Real learning, I’ve realized, often lives in these quiet acts. It goes beyond classrooms and tests. True understanding comes from setting aside our own perspectives to make room for others. By doing so, we allow them to be heard as they are. Growth happens when we take the time to see through someone else’s eyes, honoring their experience without rushing to respond. In each moment of listening, another voice finds its place.
Looking back, I understand that finding one’s voice isn’t about breaking silence but about having the courage to listen—to yourself and to others—in quiet moments. That sting of disbelief became a catalyst for resilience, turning my voice into something steadier and stronger. It sparked a belief in myself I hadn’t fully known, and with it, a purpose: to stand beside others as they uncover and strengthen their own voices.
In the end, finding your voice isn’t about being loud; it’s about the courage to keep going, to listen deeply even when it’s hard. That moment of doubt with my teacher taught me not just to trust in my own voice but to help others find theirs. By being there for each other, we create a space where every voice matters.
The reunion hall was filled with laughter and voices, faces blending into a buzzing crowd. I stood back, watching, feeling a quiet uncertainty I couldn’t shake, as though my life had slipped off course.
Then, across the room, I saw Sarah—a friend whose calm strength I’d long admired. Her presence here was unexpected, and she seemed unchanged, moving through the crowd at her own steady pace. Sarah had always faced life’s challenges with quiet resilience, never asking for attention or applause, just pressing forward, true to her values. Her courage, I realized, was a kind that didn’t need to be seen to be real.
As I watched her, I started to rethink what courage looked like. It wasn’t just in bold actions or grand gestures. Sometimes, it was in a steady step or a calm presence, in staying true to oneself even when no one else noticed. Sarah’s quiet persistence showed me that courage could exist without needing an audience.
Feeling inspired, I wrote a poem about this kind of strength:
Shapes of Courage By Kerry A. Wiley
Bravery wears no single form— it’s shapeless, shifting, thin. It is found in steps we cannot see, in battles kept within.
Strength can live in stillness, too, not only in the fight; it moves beneath what others know, not always bound to sight.
For some, it’s speaking through the noise, for others, silence held— courage wears its secret face, in voices never quelled.
Sometimes it’s holding to the ground, sometimes letting go, sometimes naming shadows there and truths we cannot show.
It can mean refusing walls, or making peace with them— or bending in the quiet dark, or finding light again.
It’s woven in the way we move, in whispers, waves, and tides— bravery the quiet pulse that settles deep inside.
So here’s to strength that wears no name, that breaks or lets us be, a courage that remakes itself, untethered, wild, and free.
Until then, I’d thought of courage as something bold and unmistakable, something you couldn’t miss. But watching Sarah, I saw courage could also be quieter, private, but no less powerful. I realized that courage could be as soft as it was strong.
This moment inspired Shapes of Courage. I wanted to honor a kind of bravery that doesn’t draw attention—a quiet resilience that carries people through their everyday struggles. In the poem, I tried to reflect how courage isn’t just a bold act but can also be a quiet, lasting strength.
Lines like “shapeless, shifting, thin… found in steps we cannot see, in battles kept within” were written for people like Sarah. Disability scholars like Clare (2020) and Wendell (2019) remind us that courage isn’t always about grand gestures; for many, it’s the small choices to keep going, even when no one notices.
When I wrote “strength can live in stillness, too, not only in the fight,” I wanted to capture this quieter form of resilience. Siebers (2018) describes this hidden strength, often missed because it doesn’t fit traditional images of bravery. Sometimes, though, courage is simply staying steady, a persistence that deserves to be honored.
In Shapes of Courage, I wanted to explore how we face limits and live with them. Goodley (2017) suggests resilience isn’t about overcoming every obstacle; it’s about learning to live alongside them. Shakespeare (2018) writes of resilience as a balance between holding on and letting go. My poem pays tribute to this kind of strength, courage that adapts and meets us where we are.
In the final lines, “strength that wears no name” refers to courage beyond recognition. Siebers (2018) notes that the courage tied to disability often goes unrecognized because it doesn’t fit the usual idea of bravery. Yet this hidden courage matters; it exists without needing an audience.
Writing Shapes of Courage changed how I understand courage. Disability research encourages us to look beyond visible acts of resilience and recognize the strength found in everyday, quiet decisions (Goodley, 2017; Clare, 2020; Siebers, 2018). Through this piece, I hope to honor that quiet, unbreakable courage that shapes lives, even when it passes unseen or unnoticed through a crowded room.
References
Clare, E. (2020). Brilliant Imperfection: Grappling with Cure. Duke University Press.
Goodley, D. (2017). Disability Studies: An Interdisciplinary Introduction. Sage Publications.
Shakespeare, T. (2018). Disability: The Basics. Routledge.
Siebers, T. (2018). Disability Theory. University of Michigan Press.
Wendell, S. (2019). The Rejected Body: Feminist Philosophical Reflections on Disability. Routledge.
Grace often feels elusive, like trying to catch raindrops or hold snowflakes. Over time, I’ve come to see grace as a steady support during life’s uncertainties and challenges.
In childhood, grace was natural and effortless. Hurts and disappointments didn’t linger; trusting and forgiving came easily. Letting go happened instinctively, without the burden of past hurts.
As I transitioned into adulthood, the simplicity of grace became more complex. Life’s disappointments lingered longer, requiring me to actively choose grace instead of it being an automatic response. Grace is no longer automatic but a deliberate practice developed through challenges and setbacks. Accepting imperfections requires effort, turning grace into a cultivated strength.
Grace does not appear during easy times. Instead, it emerges in our darkest moments, reminding us that every stumble offers a chance to start anew. Embracing grace means seeing life honestly, recognizing both its beauty and flaws, and holding space for both. It takes courage to acknowledge, “This is hard, but I’m still here,” and to find peace in that resilience.
Living with Cerebral Palsy has deepened my understanding of grace. It is not a fragile or passive quality but a resilient strength, especially on days when expectations can feel overwhelming. As a child, I never considered my limitations, but as I grew, I became aware of how the world measures abilities and sets standards. Embracing grace has been essential in honoring my unique journey and finding beauty in its rhythm, even when it differs from others.
Through each challenge and setback, grace has become the resolve that keeps me grounded on tough days. It is the inner voice that says, “Yes, this is hard, but I’m still moving forward.” When frustration arises, grace helps me see my strength and gives me the determination to say, “This is challenging, but I am here.”
Practicing grace means embracing patience and acceptance. It allows for mistakes and releases the need to adhere to others’ timelines, creating a sense of freedom. Grace doesn’t demand flawless progress but supports moving forward and recognizing challenges.
Everyday actions can reflect grace in many forms, such as staying calm during tough conversations or reaching out to mend relationships despite discomfort. This kind of grace requires humility—overlooking flaws, offering forgiveness, and letting go of past hurts to preserve peace. It recognizes that life is inherently messy. Ultimately, grace is a steady peace that carries us through life’s challenges.
Grace also means embracing my journey with its unpredictable twists and varied terrain, approaching each step with intention. By choosing grace, it becomes a guiding strength, propelling me forward one imperfect step at a time.
When people think of disabilities, the common image that often comes to mind is something visible—someone using a white cane, a person with a prosthetic limb, or an individual walking with crutches. However, what happens when the challenges a person faces are hidden from view? This is the reality for millions of people living with invisible disabilities—conditions that significantly affect daily life without showing any outward physical signs.
Though these individuals may look perfectly healthy, their conditions can deeply affect how they interact with others and navigate their environments. The absence of visible cues often leads to misunderstanding or dismissal of their needs, making their challenges even harder to manage.
Invisible disabilities encompass a wide range of conditions, from chronic illnesses to mental health disorders, learning disabilities, and neurological conditions. The hidden nature of these disabilities often compels individuals to explain or clarify their experiences, a task that can be both exhausting and frustrating. (Miller, 2022).
Understanding the Hidden Challenges
Living with an invisible disability means managing conditions that aren’t easily seen by others. For example, a person with fibromyalgia might endure intense pain and exhaustion, yet because there are no visible symptoms, they may be expected to function without extra support. In the same way, someone with severe anxiety might seem calm externally, while battling overwhelming thoughts and emotions internally.
Invisible disabilities span a wide variety of conditions. These can include chronic pain disorders like lupus, neurological conditions like ADHD or autism, and mental health diagnoses such as depression and bipolar disorder. Even though the effects of these conditions may not be outwardly visible, they can significantly affect daily life (Miller, 2022; Haegele & Hodge, 2016).
For example, emotional regulation—essentially being able to manage and respond to emotions in a balanced way—can be especially difficult for people with anxiety or autism. The absence of visible symptoms often leads to misunderstanding, which can further compound the challenges people face in obtaining the support they need (Miller, 2022).
The Difficulty of Understanding What Can’t Be Seen
A key obstacle in understanding invisible disabilities is the historical association between disability and visible signs. Disabilities have traditionally been linked to observable conditions that can be easily identified and accommodated. However, when no physical signs are present, individuals often encounter doubt or disbelief. Comments like “You don’t look ill” are frequently directed at individuals coping with chronic conditions (Haegele & Hodge, 2016).
This skepticism can pressure individuals to explain their condition or meet expectations that don’t match their reality. For instance, someone with anxiety may avoid social events, which others may interpret as disinterest, when in fact, they are managing over-stimulation. This gap between how others perceive them and their actual experience can cause feelings of isolation and frustration (Santuzzi et al., 2017).
The the consequences of skepticism extend beyond frustration. When individuals feel disbelieved or dismissed, it adds emotional stress to their already complex health situations and may discourage them from seeking help. This can worsen their conditions or delay much-needed accommodations, intensifying the challenges they face each day (Haegele & Hodge, 2016).
Barriers to Accommodation and Inclusion
The invisibility of these disabilities presents unique challenges in accessing appropriate accommodations. In schools and public spaces, support is often designed for visible conditions, such as ramps for mobility issues or braille for visual impairments. For individuals with invisible disabilities, the accommodations they need may not be immediately apparent and can be harder to secure.
For example, a student with ADHD might benefit from a quiet study environment or additional time to complete assignments. Without visible signs of their condition, these needs can easily be overlooked, leading to misunderstandings about their focus or motivation.
Similarly, someone with a chronic illness like Crohn’s disease may require frequent breaks or a flexible schedule. However, because their condition isn’t apparent, their requests for accommodation are often met with doubt or skepticism (Daley et al., 2020).
In educational environments, students with learning disabilities or mental health conditions often face obstacles in accessing the necessary support. Schools may fail to recognize the importance of accommodations, such as extra time for exams or alternative teaching approaches. As a result, these students are sometimes mistakenly seen as inattentive or underachieving, when in reality, they are managing the impact of their conditions (Stewart et al., 2020).
A Shift in Perspective: The Social Model of Disability
Fostering a more inclusive environment for individuals with invisible disabilities requires a shift in how disability is viewed. Historically, the medical model has focused on the individual’s condition as the source of limitations. However, increasing attention is being given to the social model, which suggests that barriers and societal structures, rather than the condition itself, create obstacles (Oliver, 2017).
For individuals with invisible disabilities, the social model highlights the need for environments that anticipate and include those with less obvious challenges, moving beyond mere physical modifications to more nuanced accommodations like flexible schedules and sensory-friendly spaces.
This shift in perspective challenges the assumption that only visible disabilities require accommodation and emphasizes the importance of making schools, workplaces, and public spaces more adaptable to diverse needs (Oliver, 2017; Treweek et al., 2019).
Building a Culture of Understanding
Creating a more inclusive environment involves acknowledging that disabilities come in many forms, and not all of them are outwardly visible. It requires listening to individuals’ experiences, believing them when they express their needs, and offering support without requiring proof. By broadening the understanding of what constitutes a disability, there is potential to build more inclusive spaces that accommodate a wider range of experiences.
Public awareness campaigns have made progress in highlighting the challenges faced by people with invisible disabilities, but there is still a long way to go in breaking down misconceptions surrounding these conditions (Miller, 2022). Awareness is just the beginning—what’s needed is a cultural shift that fosters understanding and accommodation.
Ultimately, recognizing the unseen is the first step toward fostering true inclusion. Invisible disabilities, though not outwardly apparent, significantly impact the lives of those who experience them. The absence of visible signs often leads to misunderstanding, doubt, and challenges in obtaining necessary accommodations, compounding the difficulties individuals already face.
Creating more inclusive environments requires rethinking the understanding of disabilities. It is crucial to acknowledge the unique experiences of those with invisible disabilities and ensure that support systems address their specific needs. By adopting a more flexible and barrier-reducing approach, spaces can become more inclusive for everyone.
Even small shifts in how invisible disabilities are perceived and addressed can have a profound effect, helping more people feel seen, understood, and supported.
References
Daley, D., van der Oord, S., Ferrin, M., Cortese, S., & Danckaerts, M. (2020). Practitioner Review: Current Best Practice in the Management of Adverse Effects in ADHD. Journal of Child Psychology and Psychiatry, 61(8), 818-832.
Haegele, J. A., & Hodge, S. R. (2016). Disability Discourse: Overview and Critiques of the Medical and Social Models. Quest, 68(2), 193-206.
Miller, L. (2022). The Lived Experiences of College Students with Invisible Disabilities. Disability & Society, 37(4), 679-699.
Oliver, M. (2017). The New Politics of Disablement. Red Globe Press.
Santuzzi, A. M., Waltz, P. R., Finkelstein, L. M., & Rupp, D. E. (2017). Invisible Disabilities: Unique Challenges for Employees and Organizations. Industrial and Organizational Psychology, 7(2), 204-219.
Treweek, S., Bevan, S., Bower, P., Campbell, M., & Craig, P. (2019). Developing and Evaluating Complex Interventions: Updating Medical Research Council Guidance to Take Account of New Methodological and Theoretical Approaches. Lancet, 374(9697), 389-395.
Disability awareness campaigns are highly visible today—on social media, in schools, and at community events. These efforts spark important conversations, build empathy, and highlight the challenges that individuals with disabilities face. While essential, awareness alone does not create lasting change.
It’s a first step, but the real work begins when awareness leads to meaningful action. Progress happens when environments evolve, ensuring that people with disabilities are not just acknowledged, but fully included in every aspect of life.
This is where awareness falls short and action becomes essential.
Why Awareness Alone Falls Short
Many disability awareness campaigns focus on educating people about the wide range of disabilities—whether they are physical, developmental, visible, or invisible. Reducing stigma and fostering understanding are critical goals. However, too often, these efforts stop at awareness.
Creating understanding is vital, but it doesn’t dismantle the real-world barriers that prevent full inclusion. In many cases, awareness is like pointing out a locked door without ever taking the steps needed to unlock it. Recognition alone won’t remove the obstacles—it’s action that makes the difference.
In Disability Visibility: First-Person Stories from the Twenty-First Century, Alice Wong compiles a series of stories that emphasize this very point. Wong highlights the gap between awareness and action by sharing the personal experiences of people with disabilities.
These narratives show that while empathy is valuable, it does little to remove the systemic obstacles that people continue to face (Wong, 2020). Recognizing the challenges is only the first step. The real work involves sustained, deliberate actions aimed at tearing down the barriers to inclusion.
From Awareness to Action
Addressing these obstacles means confronting the physical, social, and institutional barriers that limit opportunities for people with disabilities. Acknowledging disability is necessary, but it’s not enough. Active steps are required to break down the barriers that prevent full participation.
A powerful way to turn awareness into action is through universal design. Universal design focuses on building spaces and systems that are accessible to everyone from the outset, rather than making accessibility an afterthought (Steinfeld & Maisel, 2012).
This approach extends beyond just physical environments. Policies in areas like education, healthcare, and employment should be intentionally inclusive from the outset, ensuring that the needs of people with disabilities are included at every stage of their development.
Disability advocate Imani Barbarin argues that true inclusion requires recognizing how disability intersects with other identities, such as race, gender, and class. When these intersections are ignored, the solutions offered are incomplete, failing to address the full range of human experiences (Barbarin, 2020; Fishel, 2022). A comprehensive approach is needed to ensure that all aspects of a person’s identity are considered in creating inclusive environments.
Inclusion Is More Than Accessibility
Inclusion is not just about adding ramps or meeting the minimum requirements for physical accessibility. It’s about creating environments—whether in schools, workplaces, or public spaces—that allow people with disabilities to fully engage.
For example, in the workplace, inclusion may involve offering flexible working hours to accommodate different needs. It could also mean providing remote work options, ensuring that employees have the flexibility to work from home when necessary.
Another essential aspect is providing the assistive technologies that some employees may need to perform their jobs effectively (World Health Organization, 2011). Inclusion is not just about ensuring that someone can physically enter a building. It’s equally important to have systems in place that allow employees to contribute fully once they are inside.
The World Health Organization’s World Report on Disability emphasizes that inclusion must be central to public policy. The report calls on governments and institutions to create systems where education, healthcare, and employment are accessible not just in theory, but in practice (World Health Organization, 2011). This involves addressing deeper, systemic issues—like attitudes and institutional biases—that can be harder to identify but just as crucial to overcome.
Changing Perceptions of Disability
Shifting views on disability is crucial to fostering true inclusion. Disability has often been framed as something to “overcome” or as a limitation that holds individuals back. This perspective marginalizes people with disabilities and overlooks the value and diversity they bring to their communities.
In The Future Is Disabled, Leah Lakshmi Piepzna-Samarasinha confronts outdated views of disability. She calls for a profound change in how disability is perceived. Rather than viewing it as a problem, she argues that disability should be recognized as an integral part of human diversity. It enriches communities and offers unique contributions to society (Piepzna-Samarasinha, 2023). This change in perspective is essential for building a world where people with disabilities are not only included but also valued for their strengths.
Moving Beyond Awareness
Turning awareness into meaningful action requires practical steps that ensure people with disabilities can participate fully in all aspects of life. This could mean advocating for inclusive policies in local communities, supporting businesses that prioritize accessibility and inclusion, and paying attention to the voices and experiences of people with disabilities to better understand their needs.
True inclusion happens when barriers—whether physical, social, or institutional—are removed, allowing people with disabilities to fully engage with the world around them. Inclusive design not only benefits people with disabilities but also makes spaces more functional and welcoming for everyone.
Conclusion: From Awareness to Meaningful Action
Awareness is an important starting point, but it’s only that—a start. Lasting change comes from action. Policies, environments, and attitudes must be reshaped to promote full inclusion. Disability isn’t something to “fix” or overcome. It is a natural part of the human experience that deserves respect and support. Fostering accessibility and inclusion across all areas of life removes barriers and ensures that everyone has the opportunity to contribute and feel valued.
Disability advocacy is not just about laws—it is about empathy, courage, and the power to inspire change. For Justin Dart Jr. and Judith “Judy” Heumann, two pioneers in the disability rights movement, leadership meant shifting attitudes, fostering inclusion, and giving people with disabilities a voice in shaping the future (Gostin, 2015).
During National Disability Employment Awareness Month (NDEAM), their legacies remind us that inclusion is not just a goal but a shared responsibility. Real progress takes more than compliance—it requires dismantling systemic barriers and fostering spaces where people feel valued and respected.
The Origins of Two Disability Rights Champions
Though their personal journeys were shaped by distinct experiences, both Justin Dart Jr. and Judy Heumann ultimately shared the same mission: to eliminate discrimination and foster inclusion.
Justin Dart Jr. was born into a wealthy family with political connections, giving him access to an elite education and abundant opportunities. After contracting polio at the age of 18, however, he discovered that privilege could not shield him from discrimination. When he pursued a teaching career, he was denied a license simply because he used a wheelchair (Lewis & Wolf, 2018). This experience became a turning point in his life, awakening his passion for systemic change.
Judy Heumann’s commitment to advocacy took root in her early childhood. Growing up in Brooklyn, she was barred from attending public school because her wheelchair was deemed a “fire hazard” (Bagenstos, 2020). These initial experiences of exclusion ignited her passion for civil rights. What began as frustration with unjust treatment evolved into a lifelong mission to dismantle barriers and champion equal opportunities for everyone.
From Policy to Action: Dart and Heumann’s Legacy
Justin Dart Jr.: Father of the ADA
Justin Dart Jr. believed that effective policy reform must be grounded in real experiences. His “Road to Freedom” tour took him across the United States, where he gathered stories from people with disabilities about the challenges they faced. These stories became the foundation for the Americans with Disabilities Act (ADA), passed in 1990 (Reid, 1999). For Justin Dart, the ADA was more than a law—it was a promise of equality that needed to be protected and expanded over time.
In addition to his work on the ADA, Justin Dart Jr. co-founded the American Association of People with Disabilities (AAPD) to keep disability rights at the forefront of the national agenda (Lewis & Wolf, 2018). His mantra, “Lead on,” continues to inspire ongoing advocacy and progress.
Judy Heumann: Mother of Disability Rights
Judy Heumann advanced her advocacy through legal battles and organized protests. An early notable achievement was her lawsuit against the New York Board of Education, which had denied her a teaching position due to her disability. This legal case established an important precedent for the employment of individuals with disabilities, reflecting her commitment to equal opportunities (Heumann, 2020).
In 1977, she led the San Francisco sit-in to demand the enforcement of Section 504 of the Rehabilitation Act. The 26-day occupation of a federal building became the longest in U.S. history and marked a pivotal moment for disability rights (Lewis & Wolf, 2018).
Heumann’s influence also extended into cultural spaces. Her participation in the documentary Crip Camp introduced her story to new audiences, inspiring younger generations to push for change.
Disability Rights as Human Rights
Although Judy Heumann and Justin Dart took different paths, they both believed the same core truth: disability rights are human rights. They emphasized that inclusion isn’t just a nice-to-have—it’s essential.
They also knew that passing laws alone would not create lasting change. Real progress takes more than policy; it takes a shift in how communities think and act. True inclusion means everyone is welcomed, valued, and able to contribute meaningfully. Their vision shows that stronger, more connected communities start with supporting people with disabilities.
Employment: The Next Challenge
Even with milestones like the ADA, employment remains a challenge for people with disabilities. Discrimination, inaccessible hiring practices, and a lack of accommodations create barriers that prevent access to meaningful jobs. The solution lies in going beyond legal compliance to foster inclusive environments where individuals can truly succeed.
Inclusion means more than just being physically present—it requires thoughtful design in both workplaces and culture to meet diverse needs. Concepts like Universal Design ensure that systems, processes, and spaces are accessible from the start, rather than needing adjustments later. This allows employees to participate fully, without being defined by their disabilities, reducing frustration and enhancing productivity.
Leadership is also key. Companies must go deeper than surface-level initiatives to ensure lasting inclusion. Justin Dart’s vision of inclusive employment lives on through AAPD’s work, which promotes equitable hiring practices and holds companies accountable (Heumann, 2020). Heumann’s legacy is also evident in the Workforce Innovation and Opportunity Act, which aims to expand employment opportunities for workers with disabilities (Bagenstos, 2020).
Employment is about more than earning a paycheck—it’s about dignity, purpose, and a sense of belonging. Leaders like Justin Dart and Judy Heumann understood that true equality means creating opportunities for everyone to participate fully in the workforce and beyond.
Carrying the Legacy Forward
The legacies of Justin Dart Jr. and Judy Heumann offer a blueprint for building inclusive workplaces and broader communities where everyone is respected and empowered to succeed. Their leadership shows that inclusion goes beyond legal compliance—it is about creating environments where people can contribute meaningfully and feel valued.
Justin Dart’s call to “Lead on” reflects that progress requires continuous effort, while Judy Heumann’s lifelong fight for justice demonstrates the importance of challenging exclusion at every level. Honoring their work means leading with empathy, removing barriers, and ensuring real opportunities for everyone.
While laws are essential, empathy, thoughtful design, and collective action drive lasting progress. Moving forward requires commitment from leaders and employees alike to ensure everyone has the opportunity to belong and succeed.
References
Bagenstos, S. R. (2020). Disability rights and the discourse of justice. SMU Law Review Forum, 73(26).
Fleischer, D. Z., & Zames, F. (2011). The disability rights movement: From charity to confrontation. Temple University Press.
Gostin, L. O. (2015). The Americans with Disabilities Act at 25: The highest expression of American values. JAMA, 313(22), 2231–2235.
Heumann, J. (2020). Being Heumann: An Unrepentant Memoir of a Disability Rights Activist. Beacon Press.
Lewis, V., & Wolf, S. (2018). Activating the past: Performing disability rights in the classroom. Journal of Literary & Cultural Disability Studies, 12, 185–201.
McKnight, P. D. (2023). Faculty knowledge, beliefs, and willingness to provide ADA accommodations. ProQuest Dissertations & Theses.
Reid, C. (1999). Justin Dart, Jr. In Enabling Lives (1st ed., p. 22). Routledge.
Zhang, D., Landmark, L. J., Reber, A., Hsu, H. Y., Kwok, O. M., & Benz, M. R. (2010). University faculty knowledge, beliefs, and practices in providing reasonable accommodations. Remedial and Special Education, 31(4), 276-286.
Wiley’s Walk began as a personal challenge—a test of my limits and a desire to discover if I could walk without assistive devices. What started as a solitary goal quickly transformed into a broader mission: advocating for accessible, inclusive environments across critical areas like health, education, employment, recreation, and community participation.
Initially, my focus was singular—walking. Yet, along the way, unexpected setbacks, such as temporary injuries and the disruptions caused by the COVID-19 pandemic, shifted my perspective. Although I didn’t achieve my defined milestone, I gained something far more valuable: a profound understanding of the crucial role recreation and fitness play in enhancing the well-being of people with disabilities.
The pandemic further highlighted systemic gaps, magnifying the urgency of this mission. Four years later, the need to create equitable access to these opportunities is more apparent—and more critical—than ever.
Inclusive Recreation: Definition and Importance
Inclusive recreation involves creating activities and spaces where individuals of all abilities can participate fully. It seeks to remove physical, cognitive, and sensory barriers to ensure that everyone can engage meaningfully in leisure experiences. For those with physical disabilities, this may include adaptive sports like wheelchair basketball, swimming with pool lifts, or hiking trails designed for mobility devices (Anderson & Heyne, 2016).
For individuals with intellectual disabilities, inclusive recreation could involve structured programs such as art or cooking classes that use visual aids or simplified instructions to promote active participation. For those with sensory disabilities, such as visual or hearing impairments, it might include features like braille signage, tactile guides on nature trails, American Sign Language (ASL) interpretation at events, or sensory-friendly movie nights with adjusted lighting and sound. These examples show how inclusive recreation accommodates diverse needs, creating environments where all individuals can enjoy the benefits of leisure and social interaction together (Anderson & Heyne, 2016).
Inclusive recreation goes beyond providing physical access; it aims to break down social and attitudinal barriers to create a welcoming environment where people with disabilities feel included and empowered. The goal is to design spaces where everyone, regardless of ability, can actively participate (Anderson & Heyne, 2016). Programs like adaptive sports leagues and fitness classes with seated exercises, such as wheelchair basketball, are great examples of this approach.
These activities promote physical movement and help foster social connections, supporting both mental and physical health. For people with disabilities, recreation is vital, emphasizing inclusion and community as much as fitness.
Lessons from the Pandemic: The Importance of Access
The COVID-19 pandemic dramatically disrupted access to recreation for everyone, but its impact on individuals with disabilities was particularly significant.
As gyms, parks, and community centers closed, many people without disabilities could easily switch to home workouts or virtual fitness classes. The transition was relatively simple for them. However, individuals with disabilities who rely on adaptive fitness programs had far fewer options. These programs offer more than just exercise—they provide specialized equipment and trained staff, making them essential for maintaining health and well-being.
When access to these programs was lost, it became more than an interruption in routine. It heightened health risks for many (Jesus et al., 2021). Physical activity is crucial for managing chronic conditions like obesity, cardiovascular disease, and diabetes, which are prevalent among individuals with disabilities. The Centers for Disease Control and Prevention (CDC, 2020.) had already noted that people with disabilities face higher rates of these conditions, and the sudden loss of fitness opportunities during the pandemic only widened these disparities (Jesus et al., 2021.)
Research reported that more than 70% of people with disabilities experienced a decline in physical activity during the pandemic (Rowland et al., 2014; Jesus et al., 2021.) For many, this decline wasn’t just about fitness; it was about managing critical health conditions. The pandemic exposed the fragility of existing supports, reinforcing how essential adaptive recreation is to maintaining well-being.
The Lingering Psychological Impact
Even years after the shutdowns, the mental health effects of losing access to these inclusive programs are still felt. For many, these activities weren’t just about exercise—they were vital for forming relationships and easing social isolation. During the pandemic, 47% of people with disabilities reported increased loneliness, compared to 28% of those without disabilities (Holm, 2022.)
The sudden stop to these programs worsened mental health challenges for those already at higher risk of loneliness. Statistics also show that adults with disabilities are three times more likely to experience symptoms of depression, and the loss of these programs exacerbated that vulnerability (CDC, 2020).
While many facilities have reopened, the psychological impact of losing these connections lingers (Holm, 2022; Luchetti et al., 2020.) The lack of both physical activity and social interaction during the pandemic has been linked to increased anxiety and depression. A 2021 report found that 53% of people with disabilities experienced increased anxiety during the pandemic due to the lack of social and recreational outlets (National Council on Disability, 2021.)
Rebuilding Stronger: Moving Toward Inclusion
The gaps in access exposed by the pandemic emphasize the need for systemic change. Although gyms, parks, and fitness centers have largely returned to normal operations, adaptive fitness programs and inclusive sports leagues have been slower to recover. This delay reflects a broader issue: the failure to adequately prioritize the needs of individuals with disabilities in public health and recreational planning.
Looking ahead, it is crucial to treat inclusive recreation as a fundamental part of public health infrastructure. Adaptive fitness programs must be seen as essential services, not optional extras. These programs are crucial for the health and well-being of individuals with disabilities. To ensure this, they should be integrated into future public health strategies.
Recreational spaces also need to be designed with accessibility in mind from the very beginning. Retrofitting existing spaces often falls short of meeting the needs of people with disabilities. Prioritizing inclusive design ensures that people with and without disabilities can participate without barriers, from the outset.
Virtual fitness platforms offer another opportunity to rethink accessibility, particularly in online spaces. By offering adaptive exercises and creating user-friendly interfaces, these platforms can play a key role in inclusive recreation. A user-friendly interface is one that is simple to navigate, with features accessible to people of all abilities. For instance, a fitness app with adjustable font sizes, voice-guided workouts, and adaptive exercise options would allow individuals with visual impairments or limited mobility to fully engage in a workout routine. Such tools can be valuable in making fitness truly inclusive
Conclusion: Prioritizing Inclusive Recreation
Four years after the pandemic began, the value of inclusive recreation has become more apparent than ever. It exposed significant gaps in access for people with disabilities, showing how easily these opportunities can be disrupted. Recreation plays a crucial role in maintaining physical health, mental well-being, and social connection. The loss of these experiences has left a lasting impact.
Communities can take meaningful steps by incorporating inclusive design into recreational spaces from the outset. Public health efforts should embrace adaptive fitness as a core service, ensuring it’s available to everyone. Virtual platforms also need to evolve to offer adaptive exercises and accessible features so that no one is left behind. The path forward is clear. The question remains: will inclusive recreation be prioritized so that everyone, regardless of ability, can benefit?
Looking ahead, it is clear that inclusive recreation isn’t just a nice-to-have—it is essential It supports physical activity, fosters connection, and promotes mental well-being. Ensuring everyone can participate is key to building more inclusive communities. Now is the time to consider how that can be made a reality.
References
Anderson, L., & Heyne, L. (2016). Therapeutic recreation: A person-centered approach to inclusive recreation. Sagamore Publishing.
Emerson, E., Fortune, N., Llewellyn, G., & Stancliffe, R. (2020). Loneliness, social support, social isolation and wellbeing among working age adults with and without disability: Cross-sectional study. Disability and Health Journal, 14(1), 100965. https://doi.org/10.1016/j.dhjo.2020.100965
Gallant, K., Hutchinson, S. L., Hamilton-Hinch, B., & Lauckner, H. (2015). The benefits of recreation for the recovery and social inclusion of individuals with mental illness: An integrative review. Leisure Sciences, 37(1), 1-21. https://doi.org/10.1080/01490400.2014.949966
Holm, M. E., Sainio, P., Parikka, S., & Koskinen, S. (2022). The effects of the COVID-19 pandemic on the psychosocial well-being of people with disabilities. Disability and health journal, 15(2), 101224. https://doi.org/10.1016/j.dhjo.2021.101224
Iwasaki, Y., Coyle, C. P., & Shank, J. W. (2010). Leisure as a context for active living, recovery, health, and life quality for persons with mental illness in a global context. Health Promotion International, 25(4), 483–494. https://doi.org/10.1093/heapro/daq037
Jesus, T. S., Bhattacharjya, S., Papadimitriou, C., Bogdanova, Y., Bentley, J., Arango-Lasprilla, J. C., Kamalakannan, S., & The Refugee Empowerment Task Force International Networking Group Of The American Congress Of Rehabilitation Medicine (2021). Lockdown-Related Disparities Experienced by People with Disabilities during the First Wave of the COVID-19 Pandemic: Scoping Review with Thematic Analysis. International journal of environmental research and public health, 18(12), 6178. https://doi.org/10.3390/ijerph18126178
Luchetti, M., Lee, J. H., Aschwanden, D., Sesker, A., Strickhouser, J. E., Terracciano, A., & Sutin, A. R. (2020). The trajectory of loneliness in response to COVID-19. The American psychologist, 75(7), 897–908. https://doi.org/10.1037/amp0000690.
Rowland, M., Peterson-Besse, J., Dobbertin, K., Walsh, E. S., & Horner-Johnson, W. (2014). Health outcome disparities among subgroups of people with disabilities: A scoping review. Disability and Health Journal, 7(2), 136–150. https://doi.org/10.1016/j.dhjo.2013.09.003
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