We often recognize the power of storytelling through its capacity to articulate experiences, challenge prevailing assumptions, and establish a sense of ownership over narratives that might otherwise be defined by others. To tell one’s story is not simply to recount a sequence of events; it is also to participate in the interpretation of those events, determining which details are emphasized, which assumptions are questioned, and which meanings are allowed to emerge. Although this process is rarely uncomplicated, neither is it beyond reach.
Within the many expressions available in the English language, tenacity and resistance offer particularly useful points of departure for examining the relationship between personal experience and social expectation. The former concerns the capacity to sustain an intention or pursue an objective despite difficulty; the latter encompasses a broader range of responses to pressures, conventions, and structures that constrain individual or collective agency. Although frequently treated as complementary qualities, they are not synonymous. Tenacity may enable a person to persist within an existing paradigm, whereas resistance may involve questioning whether that paradigm deserves to remain intact.
For disabled people, this distinction carries particular significance. Persistence is often celebrated when a person navigates inaccessible environments, negotiates institutional procedures, or challenges assumptions about their capabilities. Yet such recognition can obscure a more consequential question: why must certain individuals expend disproportionate effort to secure opportunities, accommodations, and forms of participation that others encounter with comparatively little resistance? When perseverance becomes the preferred response to exclusion, attention may shift away from the structural conditions that make perseverance necessary.
The title Haul and Pull evokes the physical labor of moving against an opposing force, carrying a burden, or attempting to change one’s direction despite resistance. These actions provide a useful metaphor for examining the circumstances in which people pursue autonomy, contest exclusion, and negotiate the expectations imposed upon them. To haul is to undertake the labor required to move something that does not readily yield; to pull is to contend with forces that influence the direction and possibilities of movement. Neither action necessarily produces immediate progress, and neither occurs independently of the conditions surrounding it.
The weight in this metaphor is not simply the difficulty associated with pursuing a meaningful objective. It also encompasses the additional demands that arise when individuals must repeatedly justify their capabilities, explain their needs, or challenge institutional assumptions before they can participate on equitable terms. The making of tenacity, meanwhile, concerns the processes through which persistence develops: through lived experience, reflection, relationships, adaptation, and, at times, the recognition that circumstances themselves must change.
It is within this tension, between the effort required to navigate the world and the collective responsibility to make that world more accessible. That the relationship between resistance and tenacity warrants closer examination.
To understand resistance as more than a personal disposition, it is necessary to examine the social arrangements against which resistance acquires its meaning. Within many contemporary institutions, expectations concerning productivity, communication, independence, and behavioral conformity operate as implicit measures of competence. Although these expectations are frequently presented as neutral, their application can privilege particular forms of embodiment, cognition, and social participation while marginalizing others.
This process may be understood through the concept of hegemony: the reproduction of dominant values and assumptions until they become accepted as ordinary, inevitable, or beyond question. In the context of disability, hegemonic expectations can influence how an individual’s capabilities are interpreted, how support needs are evaluated, and whether a request for accommodation is understood as a legitimate condition of participation or an inconvenience to be managed.
The consequences are not confined to overt discrimination. They also emerge in the interstices of institutional life, where policies designed to promote inclusion encounter procedures, attitudes, and environments that have not been adequately adapted. An organization may formally recognize the rights of disabled people while maintaining practices that make exercising those rights unnecessarily difficult. A workplace may endorse diversity while treating conventional communication styles or uninterrupted productivity as universal indicators of professional competence. An educational institution may advocate student participation while making consequential decisions without meaningful consultation.
Such contradictions reveal a distinction between inclusion as a declared principle and accessibility as a lived condition.
The codification of expectations through regulations, administrative procedures, professional standards, and organizational conventions can further reinforce these discrepancies. Once a particular standard becomes embedded in routine practice, its origins may recede from view. What was initially a choice about how an institution should operate can acquire the appearance of an objective requirement, even when alternative arrangements would permit broader participation without compromising the institution’s legitimate aims.
Resistance, under these circumstances, need not begin with public confrontation. It may take the form of questioning a policy, requesting clarification, challenging an inaccurate assumption, proposing an alternative arrangement, or insisting that decisions affecting disabled people incorporate their perspectives. What distinguishes these actions from mere compliance is not necessarily their visibility or intensity, but their capacity to question the assumptions through which existing arrangements are justified.
Nevertheless, resistance should not be romanticized. Challenging institutional practices can entail emotional labor, interpersonal friction, uncertainty, and the possibility of retaliation or dismissal. Nor does every disabled person possess the same resources, support networks, or practical freedom to contest an inaccessible environment. The ability to resist is itself conditioned by social position, economic security, communication access, and the responsiveness of those who hold decision-making authority.
A critical account of tenacity must therefore consider not only the determination of the individual, but also the circumstances that make such determination necessary; and the unequal costs associated with expressing it.
Tenacity is often understood as a sustained commitment to an objective despite obstacles. Yet this definition, while useful, provides only a partial account of what persistence may entail in the lived experiences of disabled people.
A phenomenological approach directs attention toward the relationship between the individual and the environment as it is experienced. An ostensibly ordinary activity, attending a meeting, navigating public transportation, completing an application, participating in a classroom, or maintaining employment. May involve a series of additional calculations and negotiations for someone whose access needs have not been anticipated. These demands are not necessarily visible to observers, particularly when the individual has developed strategies for concealing discomfort, anticipating barriers, or compensating for inaccessible arrangements.
For a person with sensory sensitivities, persistence may involve managing environmental stimuli while attempting to remain engaged in a professional or educational setting. For someone with a mobility disability, it may require coordinating transportation, assessing the accessibility of a destination, or identifying alternatives when an intended route is unavailable. For a person with a chronic illness or fluctuating energy levels, maintaining participation may require continuous decisions about pacing, rest, and the allocation of limited resources.
Communication introduces another dimension. Some disabled people rely on augmentative and alternative communication, interpreters, written exchanges, or additional processing time. Others may encounter assumptions about competence because their speech, facial expressions, affect, or conversational patterns differ from prevailing expectations. People with intellectual or developmental disabilities may also face circumstances in which others speak on their behalf without adequately consulting them.
These experiences are not interchangeable, and no single account can encompass the full diversity of disability. Nevertheless, they demonstrate how an environment organized around an assumed standard of functioning can transform routine participation into an exercise in sustained negotiation.
The distinction between persistence and endurance becomes important here. Persistence may describe the deliberate pursuit of a meaningful objective. Endurance, by contrast, can refer to the continued toleration of conditions that impose avoidable burdens. The two may coexist, but they should not be conflated.
When an individual repeatedly compensates for inadequate accessibility, their apparent tenacity can conceal an institutional failure. Their success may be attributed exclusively to personal determination, allowing the conditions that complicated their participation to escape scrutiny. The resulting narrative is incomplete: it acknowledges the individual’s effort without examining why that effort was disproportionately necessary.
This is one reason that stories of disabled achievement warrant careful interpretation. Their significance need not be diminished, but neither should achievement become evidence that existing barriers are acceptable. A person can demonstrate considerable agency while simultaneously encountering conditions that ought to be changed.
The analytical challenge, then, is to recognize tenacity without turning it into an obligation. The ability to endure an inaccessible environment is not evidence that the environment is accessible.
Among the assumptions that shape contemporary understandings of achievement is the tendency to associate autonomy with independence from others. Within this paradigm, receiving assistance can be interpreted as a departure from self-sufficiency, while the ability to complete tasks without support is treated as evidence of competence. Such an interpretation overlooks the extent to which human participation is sustained by networks of relationships, technologies, services, and shared responsibilities.
Independence, understood as the complete absence of reliance on others, is an unrealistic standard for human life. What differs is often not whether assistance exists, but whether that assistance is acknowledged, made available, and organized in ways that respect individual autonomy.
For disabled people, interdependence offers a more expansive framework. It recognizes that people may exercise agency through relationships and support arrangements rather than in the absence of them. Personal autonomy can coexist with assistance, collaboration, and collective responsibility. Indeed, the availability of appropriate support may be precisely what enables an individual to make meaningful choices.
This distinction is important because support is not inherently synonymous with dependency, just as self-sufficiency does not automatically establish autonomy. A person may perform a task without assistance while having little control over the conditions under which they perform it. Conversely, someone who relies on another person, an assistive technology, or a structured support system may exercise considerable authority over their own decisions. The relevant question is not simply how much assistance a person receives, but whether the arrangements surrounding that assistance expand or restrict their agency.
This perspective also informs the concept of collective access: the shared work of creating environments in which people with differing requirements can participate. Accessibility is not exhausted by an isolated accommodation or a formal statement of institutional commitment. It may require ongoing communication, flexible procedures, accessible information, sensory consideration, appropriate technology, and the willingness to revise arrangements when they do not serve the people they were intended to include.
The responsibility for this work should not fall exclusively upon those who encounter barriers. When disabled people must repeatedly identify problems, explain their needs, propose solutions, and monitor implementation, the process of securing access can itself become an additional source of exclusion. Meaningful participation requires institutions and communities to assume a more active role in anticipating barriers and responding to the people affected by them.
This does not mean that every access need can be anticipated or that every conflict can be resolved without negotiation. Disability is heterogeneous, circumstances change, and accommodations that benefit one person may not adequately address another person’s requirements. The objective is not to impose a uniform solution, but to develop responsive arrangements that recognize difference without treating it as a defect in the individual.
Resistance consequently assumes a collective dimension. It may involve challenging the presumption that assistance undermines autonomy, questioning procedures that exclude people indirectly, or advocating for systems in which access is treated as a shared responsibility rather than an exceptional concession.
The implications extend beyond disability-specific settings. When communities develop practices that accommodate different communication styles, sensory needs, mobility requirements, and patterns of participation, they also challenge the narrower assumption that there is only one legitimate way to contribute. Such practices can benefit people whose needs have not yet been recognized, as well as those who have historically been excluded from conventional arrangements.
Tenacity, in this context, is not measured solely by what a person can withstand. It may also be expressed through the capacity to build relationships, seek appropriate support, negotiate competing needs, and participate in changing the conditions under which everyone is expected to function.
The weight of resistance becomes more manageable when the responsibility for addressing barriers is distributed rather than assigned disproportionately to those who encounter them.
Resistance becomes particularly consequential when personal experience is translated into a form that others can examine, contest, and act upon. Storytelling is one means of achieving this translation, but it is not the only one. Documentation, peer organizing, public testimony, policy analysis, and institutional consultation can likewise convert individual observations into arguments for collective consideration.
The significance of these practices lies partly in their capacity to challenge the distribution of interpretive authority. Disabled people have frequently encountered circumstances in which professionals, administrators, relatives, or policymakers are presumed to possess a more authoritative understanding of their lives than the individuals themselves. Although external expertise and assistance can be valuable, neither should automatically displace the perspectives of those directly affected by a decision.
Self-advocacy challenges this imbalance by asserting that lived experience is a legitimate source of knowledge. It can reveal discrepancies between an institution’s stated objectives and its actual practices, identify barriers that are not apparent to decision-makers, and generate proposals grounded in the realities of participation.
My own experiences in disability advocacy have reinforced my interest in the relationship between individual testimony and institutional responsiveness. During my time at the Wilson Workforce and Rehabilitation Center (WWRC), I encountered concerns among fellow students about changes affecting the campus community.
Rather than treating these concerns as isolated expressions of dissatisfaction, I helped bring students together to formulate a collective response. Within two days, we had developed a 35-page document outlining arguments for and against the proposed changes, alongside potential solutions. The proposal was approved, and changes were subsequently implemented within six months.
The importance of this experience extends beyond the completion of a document or the eventual implementation of particular changes. It illustrates how concerns that might otherwise have remained dispersed can acquire greater institutional significance when organized into a coherent, substantive proposal. The process involved listening to different perspectives, identifying areas of agreement and disagreement, and translating collective concerns into recommendations that decision-makers could evaluate.
It also complicates conventional understandings of resistance. Resistance did not require rejecting every institutional process or positioning students in perpetual opposition to administrators. Instead, it involved engaging with an existing decision-making structure while questioning whether the people affected by its decisions had been adequately represented.
This distinction matters because resistance is not synonymous with antagonism. It can be deliberative, procedural, and constructive without relinquishing its critical purpose. Nor does the use of formal institutional channels necessarily imply acceptance of the assumptions underlying those channels. A proposal, consultation, or documented complaint can function as a means of scrutinizing existing arrangements while seeking alternatives.
The experience also illustrates the relationship between individual initiative and collective agency. Although organizing requires people willing to undertake the work of gathering perspectives and developing proposals, the resulting effort derives its significance from the participation of others. The document was not simply an expression of individual dissatisfaction; it provided a structured means of presenting shared concerns and potential solutions.
At the same time, the outcome should not be interpreted as evidence that every institution is equally receptive to self-advocacy. The capacity to secure a response depends on numerous conditions, including access to decision-makers, organizational culture, available resources, and the willingness of those in authority to reconsider established practices. The fact that advocacy sometimes produces change does not eliminate the barriers encountered by people whose concerns receive less attention.
What the experience demonstrates is more specific: collective organization can create opportunities for participation that isolated expressions of concern may not achieve. It also underscores the importance of treating disabled people as contributors to institutional knowledge rather than merely recipients of institutional decisions.
This principle extends to disability advocacy beyond educational settings. In workplaces, public services, transportation systems, healthcare environments, and civic institutions, meaningful consultation can help expose the distance between formal commitments and practical accessibility. When disabled people are included early in the development of policies and procedures, their participation can inform the design of arrangements rather than being limited to identifying deficiencies after implementation.
Resistance, therefore, is not simply the refusal to accept an existing condition. It can also be the deliberate construction of alternatives.
Any examination of resistance within the disabled community must account for the fact that disability is not a singular or uniform experience. The barriers encountered by individuals differ according to impairment, environment, social position, available resources, and the degree to which institutions recognize their needs.
People with physical disabilities may confront inaccessible buildings, transportation systems, or public infrastructure. Blind and low-vision people may encounter digital interfaces, signage, and information systems that fail to provide accessible alternatives.
Deaf and hard-of-hearing people may face communication barriers when interpretation, captioning, or other appropriate supports are unavailable.
Neurodivergent people may navigate expectations surrounding sensory regulation, executive functioning, communication, and social behavior. People with intellectual and developmental disabilities may encounter paternalistic assumptions that restrict their opportunities to make decisions or participate in discussions about their own lives. Those with psychiatric disabilities or chronic illnesses may face additional difficulties when their needs fluctuate, remain invisible to others, or are interpreted through stigmatizing assumptions.
People with learning disabilities, traumatic brain injuries, speech disabilities, and multiple disabilities may encounter barriers that do not fit neatly within any one of these categories. Some individuals experience episodic or fluctuating limitations; others navigate environments in which access needs vary according to the activity, setting, or available support. Disability may be visible, invisible, acquired, congenital, temporary, or lifelong.
These categories are neither exhaustive nor mutually exclusive. A person may experience several forms of disability simultaneously, while other dimensions of social identity and circumstance influence how those experiences are interpreted. Race, gender, sexuality, socioeconomic position, age, and access to community resources can affect whether a person’s concerns are taken seriously, whether support is available, and what consequences may follow from challenging authority.
For disabled people of color, assumptions about competence, credibility, or behavior may intersect with racialized expectations. Financial insecurity can limit the practical ability to leave an inaccessible workplace or challenge a service provider. People who rely on others for housing, transportation, communication, or daily assistance may face additional risks when disagreement threatens an essential support arrangement.
These differences complicate any universal account of tenacity. It would be inaccurate to suggest that everyone has the same capacity to resist, the same opportunities to organize, or the same degree of control over the circumstances in which resistance occurs.
Nor should visible advocacy become the principal measure of agency. Some people communicate their objections publicly; others use private correspondence, supported decision-making, assistive communication, or quieter forms of negotiation. Some may choose to challenge a particular institution, while others may prioritize preserving their energy, maintaining essential relationships, or navigating circumstances in which direct confrontation carries substantial risks.
A refusal to engage in a particular struggle does not necessarily indicate passivity. Likewise, accepting assistance, changing one’s objectives, or withdrawing from an inaccessible environment need not signify defeat. These decisions can reflect careful assessments of personal priorities, available resources, and potential consequences.
The same caution applies to the language of resilience. When resilience is treated as a universal expectation, it can obscure the differences between those who possess meaningful support and those who must navigate barriers with limited resources. It may also shift attention from institutional responsibility toward the individual’s capacity to adapt.
An anti-ableist approach requires a different point of departure. Rather than asking why a person has not adapted sufficiently to an inaccessible arrangement, it asks how that arrangement was designed, whose participation it presupposes, and what changes would enable broader access. Rather than interpreting support needs as evidence of diminished agency, it considers whether appropriate support expands a person’s ability to exercise autonomy.
The objective is not to diminish individual determination, but to situate it within the conditions that enable or constrain its expression.
A comprehensive account of disability resistance must therefore preserve two propositions simultaneously: disabled people possess agency, expertise, and the capacity to shape their circumstances; and the exercise of that agency is influenced by social structures that individuals cannot always alter through personal effort alone.
Storytelling returns us to a central question: who possesses the authority to explain what resistance means?
Narratives about disability are often organized around recognizable themes of overcoming adversity, extraordinary achievement, or personal transformation. Such accounts can communicate genuine experiences of determination and accomplishment. The difficulty arises when they become the dominant framework through which disabled lives are interpreted, leaving insufficient room for ambiguity, ordinary experience, structural criticism, or the legitimacy of needing support.
A narrative centered exclusively on overcoming can inadvertently imply that the principal problem lies in the individual’s relationship to disability rather than in the conditions that restrict participation. A person who achieves an objective despite substantial barriers may be celebrated, while the inaccessible conditions themselves remain unchanged. The resulting story offers a satisfying account of individual accomplishment without necessarily addressing the social arrangements that made the accomplishment unusually difficult.
This is not an argument against sharing personal achievements. Rather, it is an invitation to examine the assumptions through which those achievements are interpreted.
My interest in disability advocacy and writing emerges, in part, from the recognition that personal narratives can contribute to a broader public understanding of disability. As a disabled self-advocate, I regard the ability to articulate one’s experience as an important means of participating in conversations that affect one’s community. Yet I do not consider my own experience a universal template. What I have encountered can illuminate particular institutional and social dynamics without establishing how every disabled person experiences them.
My experiences organizing students at WWRC demonstrate one dimension of this relationship between storytelling and agency. The concerns expressed by students acquired a different institutional significance when they were brought together, documented, and translated into a proposal. The process did not erase differences among participants; rather, it provided a means of presenting those differences alongside areas of agreement and potential solutions.
In this respect, narrative ownership involves more than the freedom to speak. It also encompasses the capacity to influence how experiences are interpreted and how those interpretations inform decisions. When disabled people participate in defining the problems that affect them, they challenge the assumption that their experiences require external interpretation before they can be considered legitimate.
That distinction is essential to responsible representation. First-person accounts possess a particular authority concerning the experiences they describe, but the disabled community encompasses perspectives that cannot be reduced to any one person’s testimony. Meaningful representation therefore requires both confidence in one’s own account and an openness to experiences that differ from it.
Storytelling can also make visible the work that conventional narratives omit: the preparation required to request an accommodation, the negotiation involved in securing appropriate support, the collaboration that makes participation possible, and the uncertainty that accompanies attempts to change institutional practices. These details need not displace stories of achievement. They can provide the context necessary to understand what achievement actually entails.
In this sense, narrative ownership is not simply a matter of speaking for oneself. It also concerns the conditions under which one’s account is heard, interpreted, and incorporated into collective understanding. Who controls the framing of a story? Which experiences are considered credible? Which forms of communication are recognized as authoritative? And whose interpretation becomes embedded in policy, professional practice, or public discourse?
These questions reveal the political dimension of representation without requiring every personal account to become an explicit political statement. The act of describing an experience in one’s own terms can challenge assumptions that have otherwise gone unquestioned.
Resistance through storytelling is consequently neither an automatic outcome nor an isolated accomplishment. Its significance depends partly on the opportunities available for people to communicate, the audiences willing to listen, and the institutions prepared to respond.
If tenacity can enable people to pursue meaningful objectives, it can also become a standard against which their conduct is evaluated. This tension emerges when perseverance ceases to be understood as a personal capacity and becomes an implicit requirement for recognition, opportunity, or social acceptance.
Within certain narratives of achievement, the individual who persists despite adversity is presented as especially deserving of success. Conversely, those who withdraw, require substantial assistance, change their objectives, or decline to participate in an inaccessible environment may receive less recognition. The resulting hierarchy assigns value not simply to what people accomplish, but to how closely their conduct conforms to expectations of determination and self-sufficiency.
For disabled people, this framework can create an additional burden. They may be expected to demonstrate competence while simultaneously navigating barriers, explain their support needs without appearing demanding, and advocate for themselves without being perceived as difficult. When these expectations accumulate, tenacity can become less a freely exercised capacity than a condition imposed upon participation.
The problem is not that persistence is undesirable. The problem arises when perseverance is treated as an adequate substitute for institutional responsibility.
Consider the distinction between an employee who succeeds in a workplace despite inadequate sensory accommodations and an employee whose workplace has been designed to accommodate differing sensory needs. Both may demonstrate competence and commitment. However, the first person’s success may depend upon additional effort that remains invisible to colleagues and supervisors. If that effort is interpreted solely as evidence of individual resilience, the workplace may have little incentive to reconsider its practices.
The same dynamic can occur in educational settings, public services, and community organizations. A student who repeatedly negotiates inaccessible procedures may eventually secure the support required to participate. Yet the success of that negotiation does not establish that the procedures were equitable. It may instead demonstrate the extent of the additional labor required to navigate them.
The distinction is consequential because an individual’s ability to compensate for an institutional shortcoming can inadvertently conceal that shortcoming. When a person develops effective strategies for navigating an obstacle, observers may conclude that the obstacle is no longer significant. The burden remains, but its visibility diminishes.
A more critical paradigm would distinguish between challenges that arise from pursuing meaningful objectives and burdens produced by avoidable exclusion. The former may be inseparable from uncertainty, learning, and the negotiation of competing priorities. The latter warrant scrutiny because their consequences may be reduced through changes to policies, environments, or institutional practices.
This distinction also requires a broader understanding of what tenacity looks like. It may involve continuing with a difficult task, but it can also involve recognizing personal limits, requesting assistance, declining unreasonable demands, or determining that a particular objective no longer merits the cost associated with pursuing it. These decisions are not necessarily evidence of diminished resolve. They may reflect an informed assessment of one’s circumstances.
The disabled community should not have to demonstrate exceptional endurance to establish the legitimacy of its participation. Access to education, employment, public services, and civic life should not depend upon whether an individual can tolerate avoidable barriers with sufficient determination.
The question, therefore, is not whether people should persist. It is whether persistence is being exercised in pursuit of their own aspirations or demanded as compensation for conditions that others have the capacity to change.
If tenacity is understood solely as the ability to continue despite difficulty, its meaning remains confined to the individual’s response to adversity. Resistance broadens that interpretation by directing attention toward the circumstances being resisted, the assumptions sustaining them, and the possibilities for changing them.
This distinction invites a reconsideration of progress itself. In conventional accounts of achievement, progress is frequently measured through visible outcomes: the completion of an objective, the attainment of employment, the acquisition of a qualification, or the successful navigation of an institutional process. Such outcomes can be meaningful, particularly when they reflect objectives an individual has chosen for themselves. Yet they do not necessarily reveal the conditions under which the outcome was achieved or whether those conditions are sustainable.
For disabled people, meaningful progress may involve both individual accomplishments and changes to the environments in which participation occurs. An accessible workplace, a more responsive educational institution, a transportation system that accommodates different mobility requirements, or a decision-making process that respects disabled people’s autonomy can expand opportunities beyond those available to any single individual.
This perspective does not diminish personal initiative. Rather, it situates initiative within a broader account of agency, one that recognizes the relationship between individual action and collective conditions. A person’s determination may initiate a process of change, but sustaining that change often requires the participation of others, the allocation of resources, and a willingness to reconsider established practices.
The concept of interdependence is particularly useful here because it challenges the presumption that autonomy must be demonstrated through self-sufficiency. The ability to direct one’s life is not necessarily compromised by receiving assistance or participating in collective efforts. On the contrary, appropriate support can expand the range of decisions a person is able to make and the opportunities they can meaningfully pursue.
The same principle applies to resistance. Not every act of resistance will produce an immediate or measurable result, and not every effort will culminate in institutional reform. Some actions may instead establish a record of concern, create opportunities for dialogue, strengthen relationships among participants, or clarify the nature of a problem for future consideration. Their significance should not be evaluated exclusively through immediate outcomes.
Nevertheless, an emphasis on process must not become an excuse for institutional inaction. Listening without responding, consulting without incorporating feedback, and declaring a commitment to accessibility without addressing persistent barriers can reproduce the very inequalities that participation is intended to challenge. Collective access requires more than acknowledgment; it requires a willingness to translate knowledge into practice.
The task, then, is not to abandon tenacity as a meaningful human capacity, but to reconsider the circumstances in which it is demanded, the purposes toward which it is directed, and the responsibilities that accompany it.
Perhaps the more productive question is not how much adversity an individual can endure, but what becomes possible when that individual’s agency is recognized and supported rather than continually tested. Under such conditions, resistance can move beyond the repeated negotiation of exclusion toward the creation of arrangements in which participation is less burdensome, autonomy is more practicable, and collective responsibility is understood as an ordinary feature of social life.
The relationship between tenacity and resistance remains complex. Persistence can sustain an individual through difficult circumstances, while resistance can expose the limitations of those circumstances and create opportunities for change. Neither operates independently of the social environment, and neither guarantees a particular outcome.
What distinguishes a more critical understanding of these concepts is the refusal to treat hardship as inherently instructive or endurance as the ultimate measure of human worth. Disabled people should not have to demonstrate exceptional perseverance to establish the legitimacy of their participation. Nor should their capacity to adapt absolve institutions of the responsibility to examine their own practices.
The relationship between resistance and tenacity cannot be adequately understood through the language of individual determination alone. Although persistence may enable people to pursue meaningful objectives under difficult circumstances, the conditions under which that persistence develops are neither uniform nor entirely within individual control. For disabled people, the demands of resistance may reflect not only the challenges inherent in pursuing a particular objective, but also the additional labor required to navigate environments that have failed to anticipate or accommodate their participation.
To recognize this distinction is not to diminish tenacity. It is to situate it within a broader account of human agency, one that considers the interaction between personal initiative, social expectations, and institutional responsibility. Resistance may require endurance, but it can also involve refusal, negotiation, collaboration, and the development of alternatives to existing arrangements. Its significance lies not exclusively in an individual’s capacity to withstand pressure, but also in the possibilities that emerge when established assumptions are questioned.
For the disabled community, this understanding makes room for forms of agency that do not depend upon the performance of exceptional resilience. Seeking assistance, requesting accommodations, relying upon collective resources, or choosing not to pursue a particular confrontation can each reflect an individual’s assessment of their circumstances and priorities. Autonomy need not be demonstrated through the absence of support, and tenacity need not be measured by the willingness to endure every obstacle encountered.
The metaphor of haul and pull consequently acquires a broader significance. To haul is to undertake the labor required to move through circumstances that may resist change; to pull is to contend with the forces that shape one’s direction, whether those forces arise from institutional expectations, social conventions, or the possibilities created through collective relationships. Neither action occurs in isolation. The weight carried by an individual is influenced by the surrounding environment, just as the capacity to alter that environment may depend upon the participation of others.
The making of tenacity, therefore, is not simply a story of adversity transformed into strength. It is a more complicated process involving experience, interpretation, adaptation, and the recognition of both individual limits and collective possibilities. Some circumstances may require persistence; others may demand that the conditions themselves be reconsidered. The distinction matters because not every burden is necessary, not every obstacle is immutable, and not every instance of endurance should be interpreted as evidence that the prevailing arrangement is acceptable.
Ultimately, the question is not merely how much weight an individual can carry, but how that weight came to be distributed, why certain people are expected to bear more of it, and what forms of collective action might make its distribution more equitable. When resistance is understood in these terms, tenacity becomes more than a measure of endurance. It becomes part of an ongoing inquiry into how people exercise agency, challenge exclusion, and participate in shaping the conditions of their own lives.
The task is not to eliminate every difficulty from human experience. It is to distinguish the challenges inherent in pursuing meaningful objectives from the burdens produced by avoidable exclusion—and to recognize that the latter need not remain an enduring feature of collective life.
Perhaps, then, the power of resistance lies not merely in the ability to continue moving against an obstacle, but in the willingness to examine why the obstacle exists, who is expected to bear its consequences, and how its presence might be reconsidered.
Tenacity can sustain that inquiry; collective action can extend its reach; and storytelling can preserve the experiences that give it meaning.
The question is not simply who can bear the weight, but whether the weight itself must remain.
I extend my sincere appreciation to the disabled self-advocates, community organizers, families, colleagues, and other individuals whose experiences, perspectives, and contributions continue to inform conversations concerning disability, accessibility, and social participation.
I am particularly grateful to those who challenge exclusionary assumptions, encourage meaningful participation, and contribute to the development of environments in which disabled people are recognized as active participants in decisions affecting their lives. Their work demonstrates the importance of collaboration, mutual respect, and the sustained examination of practices that may otherwise be accepted without question.
I also acknowledge the diversity of experiences within the disability community. No individual account can encompass the full range of circumstances, identities, and perspectives that shape disabled people’s lives. The continuing exchange of ideas, the willingness to question established assumptions, and the recognition of differing needs remain essential to a more comprehensive understanding of resistance and agency.
Finally, I offer this article as a contribution to an ongoing dialogue rather than a definitive account of the subject. I hope its reflections encourage further consideration of how tenacity, resistance, interdependence, and collective access intersect, and how individual agency can be supported without making the endurance of unnecessary barriers a prerequisite for participation.
Editorial note: This draft is a complete, research-informed essay in its conceptual approach, but it does not yet include scholarly citations. If you intend to submit it to a publication, the next step would be to verify the historical and theoretical claims against relevant disability studies scholarship and add references appropriate to the publication’s requirements.
Ian Allan
Self-Advocate for The Arc of Northern Virginia
Ian Allan is a disability self-advocate whose work is grounded in the belief that lived experience is a form of expertise and a catalyst for systemic change. Engaging with policy and service structures through both critical inquiry and personal insight, he works not only to navigate these systems but to challenge and refine them. Through his work with The Arc of Northern Virginia, he amplifies the voices of individuals with intellectual and developmental disabilities, advancing efforts that position them not as passive recipients of services but as active participants in shaping more accountable, inclusive, and equitable systems.
For those interested in exploring Ian’s work, advocacy, and professional contributions in greater depth, or in connecting with him directly, please visit his LinkedIn profile here.
As a 501(c)(3) nonprofit organization, The Arc of Northern Virginia relies on private support from individuals, corporations, organizations, and foundations to fund our efforts. Your generous donations help make it possible for us to provide programs, services, and advocacy so that people with IDD can live “A Life Like Yours.”
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