Month: November 2025

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Most days begin around seven. The extra time is necessary for putting on shoes, having coffee, and settling into the morning at a pace that feels workable. That time has become a reliable gauge. It isn’t effortless, but it reveals what has to be in place for the day to begin in a workable way.

There are mornings when that balance slips—a shoe takes longer than it should, a reminder comes too late, or the pace is off before anything has begun. Those moments clarify why small structures matter and how easily the day can shift without them.

Independence grows from practical choices and deliberate adjustments. It shows up in the way tasks are approached, how spaces are arranged, and how decisions are made. Four elements have consistently emerged as the backbone of that process: capability, adaptation, self determination, and stability. They build gradually, shaped by experience and the realities at hand.

Capability often becomes noticeable in the small things. Phone reminders come at the right moment, providing timely cues. A quick mental run through of the day helps sort out what needs attention before heading out the door. Keys and chargers are kept in predictable places so they can be easily found.

Being assertive about what is manageable, such as turning down an added task or stepping away from a conversation that has gone on too long, becomes an essential practice. Boundaries that define limits in a straightforward way make space for priorities that have to be handled. Routines that make leaving the house smoother and help finish the day without added difficulty provide needed structure. Each step adds a bit of order and makes the day easier to handle.

Adaptation becomes clear in the adjustments made to reduce strain, like shifting a chair, softening the lighting, or keeping the TV volume low so the space feels easier to manage. Lighting is adjusted so it is neither too harsh nor too dim, which reduces strain and makes it easier to move through tasks. Noise is controlled so it does not compete with whatever needs to be done. Items like chargers, scissors, and supplies that tend to get used often are kept in specific spots so they can be picked up quickly instead of being searched for each time.

Steps that require repeating, such as bending, reaching, or backtracking across a room, are reduced by setting things up in the most direct way possible. The point is to make tasks smoother rather than harder. Adaptation changes the environment so the person can move through it with less resistance.

Self-determination becomes visible in the choices that determine where time and effort actually go. Limits are set around commitments to avoid exhaustion. Workspaces or social environments are chosen when they feel respectful and manageable. It becomes important to know when to keep things as they are and when to try a different approach.

Health or mobility approaches are chosen based on what feels manageable and what the body can handle, and they are selected based on what actually works because the alternatives do not. These decisions influence what gets done and how it gets done, and they decide what happens next.

Stability comes from having reliable backups in place. A second pair of shoes stays by the door in case one cannot be put on. Chargers are kept in more than one room so running out of power does not cause unnecessary complications. A spare key is stored where it can be reached without searching. These small safeguards prevent minor issues from turning into major delays. Stability grows from knowing that if something goes wrong, there is a simple fix that allows things to continue in a workable manner.

If independence is built through capability, adaptation, self-determination, and stability, then teaching it means making those elements observable and repeatable. It isn’t something delivered in a single moment, but something modeled over time. That might involve demonstrating how to set up a space to reduce effort, plan for delays without panic, or say no without guilt. These skills are learned through example, by creating room to experiment, adjust, fail without judgment, and try again in a way that fits the person, not just the task.

What teaches independence best is consistency: the reinforcement of decisions that make life more manageable. It is passed on not by instruction alone, but by making room for others to see how small, workable choices accumulate into a reliable foundation. Over time, those choices become habits, and those habits become a structure.

Teaching independence starts with understanding how someone makes their routine work. It means noticing the choices that conserve effort, the small adjustments that prevent disruption, and the reasoning that keeps tasks manageable. When these patterns are acknowledged and supported, they become easier to explain, repeat, and reinforce.

Independence grows through insight and repetition—by understanding what makes daily routines more workable, and by practicing what works until it sticks. Over time, it becomes more than a personal achievement; it becomes a shared process others can recognize, support, and help sustain.

If independence is something that can be taught, then it is also something that can be rethought. Each person’s pillars will look different, and they will shift. The real question is not whether someone can be independent, but what conditions allow their independence to take shape. It takes shape through repeated actions—responding to what’s necessary, refining what isn’t working, and holding onto what is.

Independence comes from design—the right supports, the right adjustments, and a setup that allows things to function without constant disruption. That’s what makes it hold. What lasts isn’t built by force. It’s built by fit.

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Sometimes an ordinary task is interrupted in an instant: a part breaks, a movement misfires, or support that was reliable a moment ago suddenly isn’t. When that happens, the situation strips down to what’s practical—what needs fixing, what can be done now, and who notices.

One evening at practice, Amy faced exactly that kind of interruption. What followed was straightforward: a problem became visible, and someone nearby addressed it with competence, without turning it into anything more than it needed to be.

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The strap slipped from Amy’s fingers as the Velcro finally separated from its fabric backing. The failure hadn’t come suddenly; the stitching had been weakening for weeks—first with a few loose threads, then a corner beginning to lift. That night, as she tried to stand, the last of the stitches gave way. The strap peeled free, and her ankle tilted outward just enough to throw her off balance. She caught herself and eased back onto the bench, her eyes following the limp strip as it dropped to the floor.

The adaptive sports group had wrapped up for the evening. Most people were already heading out, pulling on jackets and saying their goodbyes. Amy stayed behind, wanting to fix the brace before she left. She leaned forward to retrieve the strip, but a sharp pull through her hip brought her up short. Shifting her weight did nothing to ease it. Her fingertips hovered just above the floor, the strip still out of reach.

Across the gym, Ryan paused while rounding up basketballs. He knew Amy from her regular sessions and had seen her stand from that bench many times. This time looked different. He watched her steady herself when the brace gave way.

He noticed the loose strip, its edge frayed and unraveling, with fine threads curling outward in loose spirals. The damage was unmistakable—it had been coming apart for some time. One look told him it wouldn’t bear any weight until it was properly repaired. He walked over without hesitation.

He picked up the strip and said in a level, practical tone, “This came off completely. I can fix it.”

From the equipment closet he retrieved scissors, a new length of Velcro, and a roll of strong fabric tape. Kneeling beside her, he removed the remaining threads, measured a new strip, cut it cleanly, and pressed the adhesive-backed piece into place. He reinforced it with fabric tape, smoothing it until it lay secure.

“Try it now,” he said.

Amy folded the strap across her ankle. The new Velcro caught immediately. She stood slowly, tested her weight, and felt the brace support her again.

“Thank you. This holds exactly how it should,” she said.

He nodded with an easy warmth. “Of course. Take care getting home. See you Wednesday.” Then he returned to gathering the basketballs.

Amy gathered her things and headed for the door. Ryan’s help had been exactly what the moment called for, offered quietly and without hesitation or commentary. It remained just that—a simple response to a straightforward need, without becoming anything more.

Living with a disability often requires constant adaptation. Equipment breaks down, patterns of movement shift, and even routine tasks—like adjusting a brace—can suddenly become more layered. Something that had been manageable alone just moments before can quickly require a different response. In these instances, help from another person can make a quiet but meaningful difference, especially when it is offered with accuracy and restraint, responding precisely to what is needed without overtaking the situation.

It may seem like a passing moment to an outside observer, but for the person experiencing it, the impact is real. Support that fits the moment helps maintain continuity—reducing friction without drawing attention or turning the task into something larger than it needs to be, or into a spectacle. Ryan saw what had happened, recognized what was needed, and responded in a way that matched Amy’s need and yet respected her control of the situation.

That kind of attentiveness stays with a person. And it quietly raises the question: why is such a natural awareness of need—offered without calling attention to difference—still so uncommon?

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Last week, Alice Wong, a leading advocate for disability rights and inclusion, died. As the founder of the Disability Visibility Project, she reshaped national conversations about access and equity, leaving a lasting impact on how many—including myself—understand disability and justice. Although I never met her, her work made a personal impact on me and on many others who learned from her determination and example.

Her national work began in 2013 when she was appointed to the National Council on Disability. From that point forward she became a consistent presence in conversations about public policy. She emphasized that access is a fundamental requirement for participation and that people with disabilities deserve to be included from the start, not added later.

Alice used writing, organizing, and community building to create space for people with disabilities to share their own experiences. The Disability Visibility Project became a central part of that effort. Through this work she encouraged public officials to address disability policy directly and she reminded the broader public that everyday choices, including the design of common items, can either expand or restrict independence. She also advocated for equitable vaccine access during the early stages of COVID, drawing attention to the needs of people at highest risk.

In 2024 she received a MacArthur Fellowship in recognition of her contributions. The acknowledgment reflected the reach of her work and the depth of her commitment to advancing disability rights.

Alice grew up in Indianapolis as the daughter of parents who had immigrated from Hong Kong. She lived with a form of muscular atrophy that gradually limited her mobility and strength. She often spoke about how early experiences with discrimination shaped her understanding of justice and informed her future advocacy.

She studied sociology, completed graduate work at UC San Francisco, and spent part of her career supporting individuals who wanted to live independently. Her writing later explained how policy decisions affect people with disabilities. She addressed the realities of Medicaid, long term care, and the constant effort required to secure reliable support. Her work helped many people understand how the structure of public programs shapes daily life.

When the political environment changed in 2024 she expressed concern about potential threats to public health programs. She understood that these systems play a central role in allowing people with disabilities to remain in their homes, maintain autonomy, and participate fully in their communities.

Alice Wong will be remembered as an advocate, a writer, and a leader who helped this country see disability more clearly. She honored the experiences of people with disabilities by insisting that they be included, respected, and heard. Her work leaves a strong foundation for those who will continue the effort to build environments where access is standard, inclusion is intentional, and every person has the opportunity to participate fully.

May her memory continue to inform that work.

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Some moments are personal. Others belong to something larger—a shared struggle, a long effort carried quietly by many. This poem honors those whose work often goes unseen, yet whose presence shapes what continues. It is not about a single event or voice, but about those who remain, who persevere, who keep pushing against doors that resist opening.

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Still—We Knock

By Kerry Ann Wiley

Black fabric—
not for mourning,
but to be seen.
Worn when
the moment
demands witness.
Still—we knock.

A name was spoken,
yet the moment
stretched beyond it.
As the words quieted,
the room shifted—
not toward applause,
but toward recognition
that more had entered
than one voice alone.

It was history carried,
effort layered,
work done quietly
over time.
Still—we knock.

Some lead
by stepping back.
Some shape
what endures.
Change builds
in places
rarely visible.

One open door
is never enough.
Behind each threshold
waits another—
sometimes locked,
sometimes guarded
by silence or custom.
Still—we knock.

The path is made
not by those
who walk first,
but by those
who keep walking,
even when
the way ahead
is uncertain.

Footsteps sharpen,
shoulders rise,
a pulse gathers
from everything
once held back.
Still—we knock.

Forward becomes fire—
not blazing,
but steady,
certain,
undaunted—
a truth refusing
to recede.

Something long-muted
flares awake—
hard, bright.

What rises now
won’t vanish.
It holds its ground,
quiet and unshakeable,
the kind of truth
that alters
what follows.
Still—we knock.

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“Still we knock” is more than a line; it captures the persistence of generations who refused to step aside. It echoes the resolve of those who kept moving forward without applause, trusting that their effort, whether witnessed or not, propelled the cause beyond the limits of any single moment.

It speaks to labor that is routinely overlooked: the work that happens offstage, outside the spotlight, behind the moments history later declares decisive. This is the force that shifts what once seemed fixed.

There is no final knock that concludes the struggle, only the steady rise of voices pushing back against silence and resistance. The poem gives shape to a presence that refuses to disappear.

The door stands heavy with the imprint of what it once denied. Yet, still—we knock, because the work remains unfinished. Even as progress takes form, what remains undone reminds us of the distance still ahead.

The poem ends, but the motion continues: a quiet insistence, a shared resolve, a history not merely remembered but continuously shaped. It leaves the moment open, urging us to stay present with its call. In the spaces where names go unspoken and effort goes unseen, a force moves forward—quiet, steady, and still demanding to be heard.

I sat at a table in a dressy black dress, the kind you wear when the evening calls for something more formal. We had just finished a meal, and the room had settled into that familiar quiet that follows shared conversation. Then the microphone was tapped, a small signal that the program was shifting, and the introduction to the award began.

I listened as my name was read, followed by a biography, a list of projects, and the work that had shaped my path. Then came the words “Advocate of the Year.” Hearing it was a shock—almost surreal—because the room was filled with people I admire: mentors, advocates, and colleagues whose example has guided me.

Seated at my table were the faces of those who have stood by me from the start—family, friends, and coworkers who have guided, supported, and mentored me throughout. And in that moment, I also felt the presence of those no longer here—those who paved the way, offered their encouragement, and shaped the values that continue to carry me forward.

The recognition was—and remains—a personal honor, but the significance extended far beyond me. It was a reflection of their contributions, support, and shared commitment. The recognition acknowledged that the work, the time, and the steady effort to help had been seen. I was deeply grateful for the moment and humbled by what it represented. It affirmed why the work matters—and why it must continue.

It is one thing to do the work because it feels necessary. It is another to realize that others have noticed not only the outcomes, but the steady focus the work required. They saw the hope behind that effort, the belief that it could lead to positive change, and the willingness to speak up when silence might have been easier. That acknowledgment carried weight. It reminded me that advocacy is not something done alone. It is shaped by every conversation, every challenge, and every person who shows up beside you.

The word advocacy may seem straightforward at first, but its depth becomes clearer when you consider what it truly involves: the ongoing effort, responsibility, and collaboration required to bring about meaningful change. At its core, advocacy is the act of seeing a gap or a harm or a need and refusing to look away.

It means stepping forward when something is not right and taking action that leads to meaningful, practical change. It grows out of intention and steady effort, not the hope of standing out. I am grateful for the honor I received, yet the work itself has always mattered most.

Self advocacy works alongside it, grounded in recognizing needs, asserting rights, and protecting wellbeing. Both matter. The advocacy that makes a difference shows up in our treatment of others, in the trust we form, and in how we respond when challenges deepen.

Effective advocates do not lead with ego. They lead with humility, aware that lasting change is built through collective effort. They listen before they speak. They learn from the people most affected. They speak up when something is wrong. They acknowledge when a problem exists and move to change it. And they also help contribute to whatever solution begins to take shape. Their focus stays on the benefit to others, not the credit they might receive.

There are traits that weaken advocacy as well. Some voices dominate rather than lift. Some chase visibility rather than progress. Some point to problems loudly yet avoid the slow, necessary work of repair. Advocacy shaped this way can do harm even when the words sound right.

This work has never been about personal recognition. From the beginning, it has been guided by a commitment to creating more inclusive schools, workplaces, and communities. My voice is just one among many, and as I accepted the award that carried my name, I was keenly aware of the countless others whose voices and efforts were present in that moment. They have shaped my thinking, supported my development, and helped make the path forward more accessible.

This work has never been mine alone. It has always been about those who come next—many of whom I will never know. My intention, both then and now, is that these efforts contribute to removing some of the barriers faced by people with disabilities and support the ongoing work of creating environments where disability neither limits potential nor determines outcomes. The goal has always been to contribute to meaningful progress—with purpose, with integrity, and with optimism.

My understanding of advocacy has always been grounded in a commitment to broader inclusion. Challenges rarely arise in isolation. If I encounter a barrier, others like Joe, Stephanie, and many more are likely confronting it as well. That is the essence of the collective “we,” the understanding that individual challenges often reflect shared experiences and call for responses that consider many, not just one. The goal is not to resolve an issue for a single person, but to change the conditions so that many can benefit.

The collective “we” calls us to look beyond the immediate and consider the ripple effects of our actions. Who else is living this? Whose experience mirrors mine? These questions invite us to expand our view and recognize the shared nature of struggle, hope and change. Reshaping the environment means creating conditions where more people feel a true sense of belonging and possibility. It means ensuring they are included, supported and understood, with the space to participate fully and to be recognized for their strengths.

Receiving the award was meaningful, yet it was not a finish line. It served as a reminder that advocacy is a practice—daily, deliberate, and grounded in the belief that change is possible. Titles do not define the work. Our choices do. The quiet moments when we name what is wrong and push for what is right are the moments that build the path ahead.

Advocacy begins with recognizing when something is not right, understanding how it affects others, and helping move solutions into place that extend beyond individual circumstances. The work ahead asks for continued dedication to the collective “we,” widening the path so that schools, workplaces, and communities become places where inclusion is not conditional or selective, but the standard that guides how people are welcomed and supported.

It is the ongoing effort to create a future where the expectation is inclusion, where opportunities are shaped by belonging rather than separation, where possibility replaces limitation, and where multiple ways forward are welcomed as part of how true inclusion takes shape.

My thanks to the nominators, the selection committee, and all who have supported and informed my work along the way. This recognition reflects the collective effort at the heart of advocacy, and it strengthens my commitment to continue working toward broader inclusion in our schools, workplaces, and communities. Advocacy is never the work of one alone—it is the strength of many, moving forward with purpose toward positive change.

—Kerry Wiley