What does it mean to have one’s disability access needs met? To answer this question, we need to know a few things—what are access needs? Who has them?What would it mean to have such needs met? These questions ultimately lead us to the subject of responsibility and accountability—to whom should the responsibility of access fall?
Typically, these questions are answered in the following ways according to law, policy, and contemporary cultural norms. Access needs are accommodations—alterations or adjustments—that are required for disabled individuals to be able to enter and be in certain spaces, and effectively take part in certain functions or activities. Meeting access needs involves meeting a standard of reasonable accommodation as described in policy like the ADA. Responsibility for claiming access needs typically falls to disabled individuals or an advocate while governmental policies aim to hold public spaces like businesses, schools, local governments, and other organizations accountable for providing “reasonable accommodations.”
Naming, advocating for, receiving, and engaging in access work thus generally tends to assume the following:
- Access is meant to accommodate; that is, access needs are exceptional.
- Claims for access should arise from the individual seeking it.
- Responsibility for providing access is judged via the legal notion of “reasonable accommodation” and oftentimes retroactively via a failure of compliance.
Access is thus rendered through an individualist (focused on individual, exceptional cases), accommodationist, (focused on changing the individual or offering changes for the individual, but not for the environment itself), and logistical or compliance-based (focused on achieving access by way of meeting standards by which one will be held accountable) lens.
Compare this with disability justice activism that understands access as collective, ongoing, iterative, and relational. In this essay I want to look specifically at a concept developed by author and disability justice activist, Mia Mingus, called access intimacy. For Mingus, access intimacy refers to a mode of relation between disabled people or between disabled and non-disabled people that can be born of concerted cultivation or instantly intimated and which centrally concerns the feeling of someone genuinely understanding and anticipating another person’s access needs.
In past work, I have interpreted Mingus’ concept as having a tripartite structure that involves 1) the feeling of access intimacy, 2) the practice of access intimacy, and 3) access intimacy’s relation to liberatory world-building. As a feeling, practice, and politic, access intimacy is a concept that generates different answers to the question of what it means for one’s access needs to be met, at times even challenging some of the fundamental assumptions this question begets. Specifically, access intimacy invites further theorization on the relational quality of access. Relational theory begins from the premise that as social animals we are fundamentally interdependent beings. It centers on the fact that our very constitution of selves is wrought via relationality and as Jennifer J. Llewellyn and Jocelyn Downie write, “integral to self-understanding and to interactions with others at individual, collective and even institutional levels” (4). The concept of access intimacy takes seriously the effect of relationality in the context of disability and adds conceptual depth to standard ways of both asking and answering the question of what it means to have one’s access needs met. Ultimately, access intimacy is a necessary corrective to help understand access more fully and to develop interpersonal and institutional practices of what Aimi Hamraie calls meaningful access.
According to Hamraie, “meaningful access…is relational accountability. It materializes from a commitment to enact, iterate, and re-iterate our answer to the questions of who belongs, where, and how” (265). Access is not (and should not be) equated with a logistical checklist. Rather, more meaningfully and to the heart of what access is meant to provide, access is, as Tanya Titchkosky puts it, “a form of oriented social action, and a way of relating to people and places…an interpretative relation between bodies” (3). If access is fundamentally social and relational, we must ask how our relations are built and formed through our assumptions about and practices of access. We must ask, as Titchkosky does, “how access can be an interpretive move that puts people into different kinds of relations with their surroundings” (13).
Oftentimes, disabled individuals are tasked with building access for themselves, either through having to do x, y, or z to prove their worthiness of an accommodation (this can include forays into the medical field for diagnoses—what Ellen Samuels calls biocertification) or by having to do the cognitive, and at times physical, labor of “lending knowledge, sharing resources, or devising solutions” (Hamraie, 265). When this happens, what can be “gained” from access needs being met is offset by the labor of access work itself, which can compound the need for accommodation in the first place. Even in situations where access is accounted for and accommodations are made, what falls out of the picture is just how strenuous or deflating on a relational level this access achievement might have been. Annika M. Konrad has described this as access fatigue, or “the everyday pattern of constantly needing to help others participate in access, a demand so taxing and relentless that, at times, it makes access simply not worth the effort” (180). Seemingly minute requirements such as having a diagnosis, filling out forms, emailing multiple people, and traveling from one office to another, can accumulate. Depending too on one’s social location and patterns of privilege and marginalization in society, navigating power relationships and institutional barriers can make seeking access simply not worth the effort. Konrad uses access fatigue as a “framework for noticing the habits that need to change to support more inclusive public life” (181).
Access work must ultimately account for the development of such habits in interpersonal, public, and institutional life. Access intimacy provides an outline for the relational qualities and orientations that must be expressed and cultivated.
As a feeling, Mingus describes access intimacy as sensing that one’s access needs are both anticipated and understood, built into the structures of everyday relationality we might say. It is a feeling of closeness with those who Mingus’s body “just [feels] safer and at ease with.” This is an elusive and hard to describe feeling, she writes, but involves a sense of freedom and relief that comes from sharing in the emotional and cognitive labor related to building access. Structures of society often make living with a disability feel isolating, shameful, and exhausting, causing individuals to be fearful of being “left by the people you love and who are supposed to love you.” Access intimacy works against this “weight” of ableism and inaccessibility to build new patterns of relating and belonging—more liberatory relations that are not based in charity, ego boosts, or trades for survival.
This freedom provides the ground for a different practice of relating between disabled and non-disabled access practitioners. Instead of a model wherein disabled individuals are invited into certain spaces as a supererogatory gesture for which disabled individuals are expected to be grateful, the relational practice of access intimacy is a type of “interdependency in action” that “calls upon able bodied people to inhabit (disabled people’s) world” rather than fitting disabled people into the abled world. By assuming the inherent value of disability and valuing disabled people’s lived experiences, access intimacy involves a relational transformation of being and becoming-different together. While for Mingus access intimacy can describe either cultivated forms of intimacy or instantaneous connections, what connects these two is the kind of conditions and relations they generate. Both require an underlying awareness and cultivation of norms, attitudes, and values against the grain of dominant ableist society and recognition that access isn’t just something done for a disabled person, but a collective social action expressing interpretations of the social world and the values, norms, and beliefs that (ought to) sustain it.
Finally, while access intimacy is a practice rooted in interpersonal relationships, it is fundamentally a liberatory, world-building exercise. Access intimacy helps develop an ethical orientation to the world that is relational and interdependent in nature. Rooted in a disability justice framework, it demands social transformation rather than mere integration, reform, or adjustment. Instead of relying on disabled individuals to identify and instigate access needs, access intimacy shifts the field and locus from which access needs are articulated. That is, it seeks to build the liberatory conditions in which access can be grounded and take place, developing a different value system and thus different expectations and commitments for “access” in the first place: access is no longer simply a need of disabled people but a need of the ableist world. Access measures are triggered simply by virtue of valuing disabled ways of being and knowing and the commitment to share in a social space with a variety of individuals.
Access intimacy is a social action. Take for example the critique of the term “invisible disability” in a series of tweets by geographer, Corin de Freitas. The term “invisible disability,” as they describe, privileges abled forms of perception. Disability is “invisible” only when one is not looking for it. “Spend enough time with crip folk,” they write, “and you notice how often a person sits or leans, how someone holds or adjusts their body, how pain can sound almost like an accent, how energy or attention ebbs, how moods flow, how communication varies, etc. You develop better bodymind literacy.” Beyond norms of compliance, access intimacy involves noticing disability in a different way, through a form of perception that assumes disability in the world, rather than retrofitting disability to the world.
What does access intimacy look or feel like? Given our current structures of society, it may look like a relationship of simply staying with the pain or struggle of inaccessibility—being in it together, so to speak. Access intimacy does not prioritize “access achievement” above all else, but is focused on the impact of inaccessible environments on disabled (and non-disabled) people and the norm of abled-existence as well as modes of social action and affective transfers taking place. If access is achieved in a way that is isolating, shaming, and indebting, then it generates values fundamentally at odds with meaningful access. On a more public, macro level, access intimacy can look like an iterative process of design that is not without its frictions but is constantly attuned to the question of who is being included, where, and how. Hamraie provides the example of competing access needs in the history of the development of curb cuts on sidewalks. While curb cuts benefited wheelchair users, it sparked difficulties for blind people navigating the transition from the sidewalk to the street. Instead of abandoning curb cuts, Hamraie describes, blind people and wheelchair users worked together to make tactile paving, an element of creative design that came from understanding access as a process, and one that involves a particular orientation to the process itself. It is an orientation of understanding access as collective social action, remaking the world in attunement with all who inhabit it.
Access intimacy pushes us beyond asking what access is, to asking what it does (or ought to do), and particularly: what quality of relationship does it espouse, what norms and values does it express, what beliefs does it sustain? If the answer to the question “what does it mean for access needs to be met” remains at the level of access being a ramp or a checklist of doing x, y, or z to protect from liability, then we have not even begun to approach access intimacy or genuine access. Genuine access doesn’t just produce ‘access’ as a logistical achievement, it produces intimacy, transformative relationality, and ways of organizing society in a more liberatory fashion.
Desiree Valentine
Desiree Valentine is an Assistant Professor of Philosophy at Marquette University. Her research lies at the intersection of critical philosophy of race, critical disability theory, and bioethics. She’s published in The Journal of Philosophy of Disability, Critical Philosophy of Race, Journal of Public Philosophy, and Puncta: Journal of Critical Phenomenology.
