Disability history is everyone's history. However, existing archival literature on disability focuses almost exclusively on issues of accessibility. Relatively little has been written on the challenges and opportunities present in strengthening disability history representation in archives. The author uses their experience as a contractor for a regional nonprofit to explore the nature of working with community members to strengthen disability history representation in archives and proposes documentation strategy as an ideal framework for such collaborations.
In 2010, the Archives Management and Records Management Joint Task Force on Accessibility developed two best practices standards for working with researchers and employees with disabilities. The best practices were revised in 2018 and became the SAA Guidelines for Accessible Archives for People with Disabilities, approved in February of 2019.1 Not long after-ward, the Society of American Archivists (SAA) approved the formation of the Accessibility and Disability Section.2 That same month, the annual SAA meeting included several sessions focused on disability and accessibility in archives. In one, four panelists—including myself—talked about our experiences documenting disability history in Western Pennsylvania. Two of us shared successes and lessons learned from the Western Pennsylvania Disability History and Action Consortium (WPDHAC); Sierra Green, archivist at the Senator John Heinz History Center, shared her experiences collaborating with disability communities to archive their history, while I spoke about my experience working as a contractor for the WPDHAC while pursuing an MLIS at the University of Wisconsin–Milwaukee.
Green and I spoke on the same topic a year later in August of 2020 alongside other colleagues from the WPDHAC—Anne Madarasz (director of the Curatorial Division, chief historian, and director of the Western Pennsylvania Sports Museum) and Emily Ruby (curator). This time, speakers and conference attendees alike were tucked away in our homes in the midst of a global pandemic that, among so many other things, has brought issues of public health, accessibility, and workplace flexibility to the forefront of global consciousness. In both instances as a panelist, I spoke about the subject of this article, written in spring of 2019 and revised in 2021. My core argument in all iterations is the same: that the archival community needs to collectively implement and strengthen disability history collecting efforts and that documentation strategy is an ideal framework for these and similar efforts. While the WPDHAC was not founded with a formal documentation strategy approach in mind, enough parallels exist to make this small, community-led nonprofit a useful case study for examining how documentation strategy can be used to plan and enact a sustainable approach involving collaboration with community members to map gaps in the archives and fill those gaps.
I should be clear here that although my focus is on documenting disability history in our communities and within our institutions, I am also deeply invested in the history—and the present and the future—of disability in the archival field itself, as are my colleagues in the Accessibility and Disability Section. A brief overview of conversations around disability in our field to date follows.
In 1979, Lance Fischer outlined steps for making archives more accessible to deaf researchers.3 A 1983 article by Brenda Kepley further detailed steps to improve accessibility for a wider range of researchers with disabilities.4 Archivists with disabilities themselves are not mentioned in either article; neither are people with disabilities beyond those impacting sight, hearing, or mobility, or resulting from age.5 Ronald Gilardi, writing in 1993 after the passage of the Americans with Disabilities Act of 1990 (ADA), built on Fischer's and Kepley's writing in his survey of legal precedents leading up to the passage of the ADA and its—at the time anticipated—impact on archives. He noted then that archival institutions needed to be prepared to hire archivists with disabilities in addition to ensuring access for patrons in compliance with the law. These are some of the earliest formal writings on disability in archival literature.6
In more recent years, Lora Davis explored accessibility of online repositories.7 Sara White8 has contributed perhaps the most all-encompassing overview of disability in archives, which I will touch on in this article. Dr. Gracen Brilmyer has applied disability models to archival work9 and explored disabled archival users' experiences of their own erasure in archival material.10
While the amount of archival literature on disability is slowly increasing, much of it still centers around issues of access to collections and employment. Relatively little exists that explores disability collections themselves, the work of gathering the physical and oral and digital materials that embody disability history, thus rendering our bodies—our lives, our presence, and our absence—visible within the context of history as a whole. Existing resources include Laurie Block's introduction to the Disability History Museum, an online project “conceived as a means to promote understanding by recovering, chronicling, and interpreting stories about the historical experience of people with disabilities,”11 as well as Meghan Rinn's article on the P. T. Barnum archives12 and an article from archivists at the University of Toledo sharing their efforts to document disability history in Ohio.13 Also of note is a white paper from the Disability History/Archives Consortium, an NEH-funded project that lasted from 2015 to 2018 with the intent of creating an online portal through which researchers could peruse disability history collections as reported by member institutions.14
As for what I now contribute to this small subcategory of archival literature, let me begin with some background. I joined the Western Pennsylvania Disability History and Action Consortium as a steering committee member and contractor in January of 2019 while still a student at the University of Wisconsin–Milwaukee. The WPDHAC is, as you might imagine, based in Western Pennsylvania and, for the most part, operates out of the city of Pittsburgh half an hour from where I grew up. It was founded in 2015 with a goal nearly identical to that of the Disability History/Archives Consortium, albeit within a far more limited geographic scope—regional rather than national.15 The consortium's mission is “to preserve and honor the historic struggle of Western Pennsylvanians with disabilities to attain human and civil rights” by serving as a clearinghouse for disability history collections in Western Pennsylvania, both those housed in traditional institutions and those in the hands of community members. The WPDHAC also seeks to educate Western Pennsylvanians about their own history. This work is built upon the understanding that disability history is underrepresented in the historic narrative as a whole and that existing collections are not being adequately documented and preserved.16 Moreover, this is an issue of increasing concern as the changemakers of older generations pass away and as the disability justice movements of today take place online and within community, rather than institutional, settings.
The WPDHAC's steering committee is made up of individuals representing disability service providers, advocacy groups, activists, archivists, educators, and community members. Of particular interest is the consortium's relationship with the Senator John Heinz History Center. The Heinz, legally known as the Historical Society of Western Pennsylvania, is located in the Strip District of Pittsburgh and encompasses several museums, the Detre Library and Archives, and a conservation center. Several staff members of the Heinz are on the consortium's steering committee; the consortium itself is an officially recognized affiliate of the Heinz.17 Most of the collections the consortium lists on its website are housed at the Detre Library and Archives within the Senator John Heinz History Center or are made available online through the University of Pittsburgh Library System. In short, the WPDHAC is a collaborative effort made possible through the joining together of archival networks and community networks leveraged in pursuit of a shared goal: documentation of disability history collections in the region.
I connected with the consortium during my internship with the Sisters of Charity of Seton Hill Archives, shortly after members of the WPDHAC reached out to learn more about the records of the DePaul School for the Deaf and Hard of Hearing, founded by the Sisters of Charity of Seton Hill (and a school I attended as a child). Becoming a contractor for the WPDHAC was a way for me to deepen my own personal connection to disability history in the region. It also showed me some of the real-life challenges of bringing multiple stakeholders together toward a common goal and how concepts in my archives coursework could be applied to the work I was doing. Of these concepts, Helen Samuels's documentation strategy was of most interest to me. She defines documentation strategy as “a plan formulated to assure the documentation of an ongoing issue, activity, or geographic area . . . designed, promoted, and in part implemented by an ongoing mechanism involving records creators, administrators (including archivists), and users.”18 Jennifer Marshall, reexamining Samuels's proposals twelve years later, adds that documentation strategy is a continual process.19 I could see elements of all this at play in the WPDHAC and wished to draw them out and explore documentation strategy in the context of the WPDHAC. Moreover, a collaborative plan rooted in archival theory was very attractive to me, as I had already witnessed the ways in which balancing modes of operation of a community nonprofit and an archival institution is sometimes a struggle when collaborators are financially beholden to different stakeholders.
The rest of this article constitutes my formal exploration of all this by way of a four-step process outlined by Helen Samuels, following a review of documentation strategy's origins and some questions to consider in the context of disability history. This exploration will include a brief discussion of the WPDHAC's successes, issues, and recommendations for implementing similar plans.
Documentation Strategy and the Documentation of Disability History
Origins: Documentation Strategy
Documentation strategy is an ideal entry point for discussing disability history records in the archive as it is well designed to address gaps in the historic narrative by “provid[ing] a useful framework for discussing selection issues.”20 It is “[a] methodology that guides selection and assures retention of adequate information about a specific geographic area, a topic, a process, or an event that has been dispersed throughout society.”21 It generally involves collaboration between multiple stakeholders and may encompass active creation of records.
Hans Booms is widely credited as one of documentation strategy's earliest proponents. He suggested that, faced with exponentially increasing quantities of records, archivists should seek to further their knowledge of a given topic, organization, or societal structure prior to conducting appraisal and ought to do so by examining events and cultural attitudes that informed the creation of records.22 He argued that value is found in context as well as in content and that understanding the former is necessary to assess the latter with as little subjectivity as possible.23 Booms's core assumption is that avoiding subjectivity can be accomplished by looking to the past at significant events and attitudes fixed in time; from the vantage point of our present, we know what ended up being of lasting importance and therefore what documenation we should seek out and preserve.24
Helen Samuels refined Booms's ideas in 1986 when she presented documentation strategy as a concrete approach to appraisal in her article “Who Controls the Past.” She noted the abundance of specialized institutions and experts that constitute an interconnected documentary universe, a potential network that becomes a resource for archivists. No institution has sole claim to the documentation of a particular topic; the more we are aware of existing documentation elsewhere, the greater our ability to determine the value of what is in front of us in this place and this moment.25 In reference to anticipating the needs of future researchers, Samuels says that “[a]n additional problem associated with the selection of topics to be documented is that, of necessity, topics are chosen based upon current historical understanding.”26 We, like the records creators we seek to understand, are bound by the context of the here and now. Unlike those we look back toward, we do not yet know what of our time will have lasting impact. How can we “free [ourselves] from the socially conditioned prejudices formed by contemporary value structures, or at the very least, gain some distance . . .”?27 Some argue that if the past is prologue, we ought to be guided by the collecting decisions made by those who came before us.28 Others point out that the past can only be prologue to the extent that there are no gaps in the archives—to assume that the collecting decisions made by our predecessors provide us with a suitable template for future decisions is assuming quite a lot.29
Overall, documentation strategy is not a movement toward neutrality but rather away from subjectivity. Part of that means properly recognizing and acknowledging our lack of subjectivity where it is unavoidable and the resulting consequences. Sara White highlights the power inherent in appraisal by saying that “[d]uring the appraisal and selection of records, archivists begin creating a disability identity when they decide to preserve or destroy records.”30 The very existence of gaps in disability history records means that, through the actions and inactions of archivists, a disability identity has been created—or rather, erased. I believe that to continue one's current archival practices unaltered is to continue this erasure of disability identity and to construct an inaccurate, incomplete mirror of society as it was, as it is, and as it is becoming. This results in what Michelle Caswell terms “symbolic annihilation,” saying, “[t]o be symbolically annihilated is to be an eternal outsider whose very presence is presumed an impossibility. In the wake of this absence, marginalized communities fail to see themselves or their places in the world.”31 One of the challenges of modern appraisal is to preserve, without perpetuating, a collective historic record rife with inherited absences—to return to those absences time and again to see what meaning has accumulated.32
For example, the WPDHAC, in collaboration with the Pennsylvania State Archives, has sought to document institutionalization in Western Pennsylvania. Most of the records that have been preserved are those created by doctors, board members, and family members. These collections largely consist of records created by individuals without disabilities, documenting those with disabilities; records created by the people who lived in these institutions may well be lost. The records that remain are evidence of how both the best and worst of intentions dictated the treatment of people with disabilities. One such case is that of the records of Dixmont Hospital in Allegheny County, Pennsylvania. Dixmont, founded in part by renowned social reformer Dorothea Dix and intended to serve as an alternative to the unjust treatment of the mentally ill at the time, offered a spacious location and fresh air. However, the hospital soon grew crowded. Patients began to produce rugs and other items that were sold to fund the hospital; in all likelihood, patients never received wages for this work.33 The very nature of their institutionalization meant that patients were sequestered from society and rendered invisible, not only during their own time but doubly so through the absence of any firsthand records today.34
How we view the history of Dixmont today is informed by deinstitutionalization and by the disability rights movement in the latter part of the last century, as well as by the psychiatric survivors and independent living movements.35 In this way, the more recent past, too, becomes prologue to the archivist's work. White's overview of disability history in the United States provides a useful demonstration of how the concept of disability has evolved over time, following a trajectory from moral concern to medical concern to a social and political issue. By understanding this trajectory of disability history in the United States, we are able to understand why documentation exists in the first place, as well as who was afforded time and materials to accomplish it. History folds over on itself as each generation looks back. Through awareness of these overlapping and evolving perspectives, we are able to move away from subjectivity.
Parallels: Putting the Work of the WPDHAC in Conversation with Documentation Strategy
Comparing Samuels's documentation strategy with the work of the WPDHAC reveals challenges specific to disability history and community-based collecting efforts. By taking an approach to collecting based on documentation strategy, the WPDHAC may refine its collaborative approach to collecting and serve as a model for other institutions in developing and sustaining efforts to collect disability history.
As of 2019, the WPDHAC's website publicly listed twenty-five collections that document Western Pennsylvania disability history. A further seven collections were in the process of being assessed and/or accessioned by the Heinz History Center; approximately eighty groups, organizations, or individuals had been identified for further contact regarding any materials they may possess that might be relevant to the WPDHAC's collecting efforts. These eighty points of contact were identified through the knowledge of subject experts and through responses to online surveys sent out over the past few years. Educational events hosted throughout the year by the WPDHAC are one way new contacts are identified and encouraged to fill out the survey if they would like to do so.
Archivists with the Heinz partner with the consortium and provide guidance to consortium members, but do not direct WPDHAC outreach efforts; though the fruits of this collaborative effort are vital to both parties, the collection process is typically initiated from within the consortium rather than from within a traditionally recognized archival institution. The WPDHAC does much of the preliminary work of identifying and engaging with potential donors, as well as coordinating meetings with these donors and representatives from the Heinz. WPDHAC members provide local and regional historical context for the items and stories the donors bring to the table. The Heinz then has the responsibility to conduct further research and, ultimately, make decisions about whether to accept collections or provide preservation guidance.
Documentation Strategy Step by Step
Helen Samuels defines documentation strategy as consisting of four steps: “(1) choosing and defining the topic to be documented, (2) selecting the advisors and establishing the site for the strategy, (3) structuring the inquiry and examining the form and substance of the available documentation, and (4) selecting and placing the documentation.”36 The first step Samuels proposes is perhaps one of the most contentious. It is the process of defining exactly what is to be documented—which, as discussed earlier, can be an interesting undertaking when the topic is the history of a community that is at once the largest minority group in existence and also the most flexible and varied in scope. Doris Malkmus suggests that some topics are better suited for documentation strategy approaches than others, pointing to those that are “well defined and have an existing community of experts who understand existing documentation” as key to successful implementation of documentation strategy. Also key in her opinion is the role that stakeholders play in the process, though that point will be covered later.37 The manner in which topics are delineated may include geographic limitations and subject limitations. In the case studies Malkmus analyzes, documentation initiatives using topics defined by geographic limitations alone were more likely to fall short of their goals simply due to the immense range of material that even a small geographic area can encompass.38 If not sufficiently narrow, subject-based collecting initiatives can fall into the same trap. Blending the two means of narrowing a particular collecting initiative can lead to greater success, though flexibility is required, as understanding a topic naturally changes as the documentary universe expands.39
The geographic scope in use by the consortium is apparent in the organization's name—the Western Pennsylvania Disability History and Action Consortium—and is further clarified in its mission statement. The consortium's defined scope is limited in both geography and subject. Western Pennsylvania itself consists of twenty-six counties. Though such a broad geographic area might initially seem daunting, the difficulties are lessened by a few factors. First is the scarcity of disability history materials publicly available for research—an observation made by White and confirmed in this region by academic researchers who have shared their personal experiences with the consortium.40 Second is the concentration of disability history advocacy and activism in Pittsburgh and the surrounding areas. Many of the steering committee members are based in Pittsburgh. While activism has occurred outside of the urban areas of Western Pennsylvania, at present it does not seem that this activism has been particularly well documented (which is, of course, precisely what the consortium hopes to address). Additionally, twenty-one of the collections listed publicly on the consortium's website are housed in Pittsburgh, mainly through the consortium's partnership with the Heinz. This does not necessarily mean that records available to be documented are limited to Pittsburgh; rather, it may indicate that collecting efforts outside of Pittsburgh have not been adequate to date.
As for the flexibility of the subject of disability and what might fall under the umbrella of disability history, Malkmus draws the commonsense conclusion that “[d]ocumentation strategy projects are most manageable when widespread consensus exists on what constitutes the topic.”41 Is this possible with disability? Returning to Sara White, we see an exploration of how the concept of disability itself has changed within disability theory over time. One current theory is complex embodiment, which is the idea that disability is not so much a category as it is an experience—moreover, it is one that changes.42 In a 2018 paper, Gracen Brilmyer applied a political/relational model of disability developed by Alison Kafer to archival description.43 This model draws attention to the ways in which disability is defined through relationships with others and with the world. These models can serve as frameworks for developing a flexible collecting scope that can evolve as documented communities evolve.
The WPDHAC has not actively chosen a single specific definition of disability to adhere to; rather, the focus is on the involvement of steering committee members who are active in their respective disability communities and areas of expertise. Each member offers insights into the overall movement that would not have been discernable to someone without their particular background. At the same time, their areas of focus limit them. For example, the committee's subject experts on the subtopic of mental health have, for the most part, been involved with traditional mental health care and operate from the psychiatric perspective. The consortium is now working to bring perspectives from the ex-patient community into the discussion. In addition, the consortium's steering committee is predominantly white and middle-class, and comes from either an institutional or a parent advocate background. However, in this article, I cannot unpack why and how these voices are so often the basis of the common disability history narrative, nor how that narrative glosses over deeper discussions of what is considered an acceptable body, mind, and set of behaviors throughout the history of the United States. Suffice to say there is room for improvement, and the consortium is actively working to include a broader range of voices in all areas of collecting efforts in addition to that of mental health history in the region.
The second step in Samuels's proposed strategy is selecting a long-term base for collecting efforts. This base must be able to provide resources for ongoing collection and access to the resulting materials, and must be able to do so consistently for the foreseeable future.44 For the consortium, this base is the Senator John Heinz History Center. The Heinz provides consultation from professional archivists and curators. These archivists go with members of the consortium to assess collections of interest and to see what the Heinz might accession or what should remain where it is but be added to the consortium's website so researchers can be aware of its existence. This partnership works well because the missions of the Heinz and the WPDHAC complement one another. Namely, both are concerned with documenting and sharing the history of Western Pennsylvania. The WPDHAC's focus is much narrower but still falls under the scope of the Heinz's collecting mission; in partnering with the WPDHAC, the Heinz addresses gaps in its collections and uses external resources to do so.45
Such collaboration between institutions is a key feature and strength of documentation strategy. In addition to the Heinz History Center, the WPDHAC collaborates with Temple University's Institute on Disabilities, the Pennsylvania State Archives, the University of Pittsburgh, and numerous organizations within the disability advocacy, service, and activist communities. The WPDHAC has joined with these organizations to host educational events, share knowledge, and create multimedia resources. The consortium has much in common with the LGBTQ Religious Archives Network—as examined by Doris Malkmus—in that the collecting initiative has roots in the community first and in traditional archival institutions second.46 An overview of efforts to collect environmental activism records in New York, provided by Brian Keough and Amy Schindler, also parallels the consortium's collaborative efforts.47
The third step in Samuels's documentation strategy is to develop a thorough understanding of the topic under consideration. Samuels contrasts this with other practices in which collecting scope is determined based on materials already housed at a given repository. Documentation strategy, in her opinion, is “designed to respond to abundance—an abundance of institutions and information.”48 It is meant to take into account the complex relationships that exist among and between various institutions and individuals.49
Thus, an understanding of the topic comes primarily from consortium members' personal experiences as leaders and advocates within the local disability movement and from the firsthand knowledge of survey respondents. Founding members of the consortium invited community leaders and subject experts within each of these subtopics to serve on the steering committee—a step similar to that taken by archivists documenting New York's environmental activism.50 As far as I know, no formal examination of disability history has been undertaken apart from analysis of survey responses; experience and collaboration form the map that guides collecting efforts. Here it may be worth asking: what else would work as well for documentation of Western Pennsylvania disability history? Our history is not contained in the archives. Whatever might serve as a prologue for collecting efforts exists outside the archives, in people and events. That is the benefit of documentation strategy as an approach to appraisal; it recognizes both our knowledge and the existing archives we care for as inherently incomplete, in need of supplementation. If records documenting disability history are not already in archives, if this particular thread of history remains locked in the attics and the memories of those who lived it, then developing an understanding of the topic must be an active and engaged process—at least, where it concerns understanding a specific region's disability history. Knowing that important components of disability history include access to public transportation, alternatives to institutionalization, and special education is one thing; knowing the stories of Paul Dick, Joe Benedum Trees, and Kate Bayer is another.51 The former is context, the “why” of preserving disability history records, but it alone will not get you to the “what,” the records themselves.
The fourth step of Samuels's process is to actively select records for preservation. The Heinz has been an invaluable partner in undertaking this step. As noted, archivists from the Heinz History Center assist the WPDHAC after potential collections have been identified. The archivists are able to offer advice regarding the state of collections as a whole, their relevancy to both the WPDHAC and the Heinz, and what next steps should be taken. At the same time, members of the WPDHAC can identify particular records or events of significance within collections, describing a hyper-specific regional context that archivists might not readily be aware of otherwise.52 Gaps in understanding between community experts on the one hand and trained archivists on the other can sometimes exist. This can lead to different understandings of which records are candidates for selection and preservation. As such, part of the work in making preservation decisions necessarily includes striving toward mutual clarity and reconciling competing priorities.
On the whole, comparing the work of the WPDHAC with Samuels's recommended steps for documentation strategy reveals striking similarities, even given that the WPDHAC developed organically outside the archival tradition. The WPDHAC can take specific actions that will strengthen its collecting initiative, both in theory and in practice. I also recommend areas for further research and consideration within the archival field as a whole.
WPDHAC: Next Steps
Documentation strategy is not meant to be a means of compiling all holdings concerning a given topic under one institution's roof. This includes intellectual control of the holdings. Though the WPDHAC's partnership with the Heinz History Center is mutually beneficial, the aim of gathering and safeguarding Western Pennsylvania's disability history would be better served by ensuring that several institutions are equipped to care for disability history records and that doing so does not fall to a single institution. As it stands, the Heinz is one of few institutions currently housing these records that are well positioned to care for them indefinitely and under whose scope regional disability history fits. Many collections are as yet unidentified or else are poorly maintained, considered only as afterthoughts in the course of daily operations. For example, in 2019, the records of the Pittsburgh Public School System's special education department in the 1970s had changed location many times over the course of decades and were in real danger of becoming damaged or lost when the WPDHAC and the Heinz History Center began conversations with the school system about its disability history. In instances like this, the safekeeping of records in danger of becoming lost takes a certain amount of precedence. Here, the Heinz's established reputation and expertise is an asset. Yet, what of collections in the hands of those who, while not archivists, can take care of the collections? And what of those who see value in keeping collections in the hands of the communities from which they originated?
Collaboration with the WPDHAC is but one of the Heinz's many projects; identifying other repositories that are also interested in and able to house disability history collections would potentially expedite the process of transferring collections in need of expert care, would spread out the financial burden of maintaining this documentation project, and would free up time and resources that could be spent educating community members on how to care for their own collections. On the community side, it would provide more options for those who do wish to donate their collections. It would allow institutions themselves to build—and advertise—collection strengths based on foci within the broad topic of disability history. Selection decisions would ultimately remain the prerogative of individual institutions. However, the benefit of using a centrally coordinated appraisal strategy developed for and by members of the documented community affords all the collaborating institutions the benefit of firsthand knowledge—a merging of archival and community networks.53
Along these lines, another goal for the WPDHAC ought to be to more fully develop and make known its guidelines for disability history records documentation. Both a mission statement and a vision statement are plainly stated on the WPDHAC's website. A collecting policy is not included due to the consortium's role as a clearinghouse rather than as a repository in its own right. Its primary goal is that of mapping the region's documentary universe of disability history collections. Determining what is of archival value largely falls outside the WPDHAC's scope and within that of the Heinz and the regional institutions that physically house disability archives. Nevertheless, providing some form of information on documentation scope and on how that scope has been decided would be a useful starting point for other institutions interested in building disability history collections, regardless of whether they choose to collaborate with the WPDHAC and the Heinz. It would also offer records creators and subjects who are not actively involved as members of the consortium a chance to share feedback on the consortium's efforts.
The WPDHAC could also compile further resources on disability history, namely secondary sources on issues and events relevant to the region and to the larger picture of disability history nationwide. These can potentially be made available for future collaborators, whether they come from a disability movement background or possess an archival background. Both groups would likely benefit from a self-aware analysis of disability history and a discussion of that analysis. Depending on the manner in which these resources are gathered, this library of sorts could serve as a gathering spot for new research that emerges as a result of the WPDHAC's efforts to make disability history better known and more widely available.
A future initiative that the steering committee of the WPDHAC hopes to undertake if and when funds allow is the digitization of the disability history collections within its purview. Accessibility is already a major concern for archives users with disabilities; eliminating the boundary of distance would be a major step forward.54 Creating a digital archive might also prove to be the foundation for developing a network of disability history and action collections beyond Western Pennsylvania; the WPDHAC and other existing efforts could serve as templates.55 This is vital due to what has already been stated in this article: disability history is underrepresented in archival repositories. Where it is documented, the collections are typically small and isolated. To link these collections, even if just by making brief descriptions available on one central website, would serve as a fuller representation of the disability documentary universe than has yet been seen. However, doing so first depends on an awareness of where existing disability collections are, and an expansion of disability history collecting efforts.
Archives: Next Steps
The archival field as a whole would do well to reexamine literature on disability in the archive and to delve more deeply into interdisciplinary research. Library, museum, public history, and disability studies fields are all engaged in conversations on disability and accessibility.56 By comparison, archives lag. Research into appraisal of disability history records is sorely lacking, as is research into the challenges of processing and preserving disability history collections. The latter is an interesting area to explore in the context of accessibility and digital archiving. How can alt text for the visually impaired be linked with the image in question across formats and time? When software-based adaptive technology is included within a collection, will current protocols be enough to ensure its preservation? (An example might be a website with coding developed specifically for accessibility purposes, or apps designed to assist individuals with disabilities. How do we preserve those?) In fairness, these are questions to be asked of society as a whole and not just of the archival field. When disability communities are included in every aspect of society from the beginning, accessibility in archives will become one part of a continuous process rather than an infrequently applied afterthought.
Regarding appraisal, I believe that the WPDHAC's community roots and organic development offer food for thought. A primary complaint levied against documentation strategy is that it requires too much effort. The fact that it is an ongoing process threatens to drain institutional resources and can distract from other priorities.57 It also takes a considerable time for archivists to gather the amount of information necessary to make informed appraisal decisions, especially when they are unfamiliar with the context of a given topic. Subject experts can help alleviate this burden by sharing their knowledge and lived experiences. The WPDHAC's leaders are active within the region's disability community and are able to provide advice and determine the direction of collecting projects from the very beginning of the process. They help determine which projects ought to take priority in a given fiscal year, including which collections ought to be appraised sooner rather than later due to risk of damage or to potential loss of contextual knowledge. Thus, appraisal is initially shaped by those most knowledgeable in the topic and is concurrently edited by those knowledgeable in archival practice. It is not a surrender to the whims of public opinion, nor is it an imposition on the record made by (impossibly) neutral parties, nor is it an act of patience that—in adopting the same strategies that have always been adopted—lets all else fall to the wayside and, in the process, aids documentary extinction. Rather, it is an expansion of that familiar archival adage that past is prologue. The past includes the subjects of records as well as records creators and what they created. It includes what was not created. It includes the more recent past, embodied in members of the communities we document and are a part of ourselves.
Moreover, the fact that the WPDHAC is a nonprofit organization means that it can pursue funding specifically channeled toward disability documentation efforts. Is this a perfectly sustainable model? No. Much of the WPDHAC's success relies on volunteers, and the fact that the consortium and the Heinz are beholden to different stakeholders for financial support can sometimes give rise to clashing priorities. Nevertheless, I bring this up because a common argument against documentation strategy and similar frameworks is that they are impractical from a funding perspective. However, to be frank, disability collecting efforts should already be considered within the collecting scope of virtually every repository and therefore should already be accounted for within existing funding allocations. This should be so because first, our history is worth documenting in its own right. Second, because our history is, for all intents and purposes, everyone's history. (Some years back, Mark Greene spoke to the fact that to live with disability is very often a question of when, not if.)58 That said, the WPDHAC is an example of how community collaborators might bring their own sources of funding to the table.
With all this in mind, archivists seeking to implement documentation strategies in their own institutions ought to center subjects and subject experts in their existing plans, actively including community collaborators. I also advise that archivists take roles as educators in implementing documentation strategy. Archival work grows increasingly complicated as the documentary universe expands exponentially. It is not possible to collect every record, to fill every gap. The next best effort may be to educate the public on how to document and care for their own history. Documentation strategy—while far from faultless in terms of sound archival theory and practice—at the very least provides achievable steps, a framework within which such work can be done consistently, while existing literature on community archiving efforts provides case examples.
A final recommendation: archivists engaged in collecting must boldly revise and update their strategies. The past accumulates, and failure to document the vast entirety of the universe of records on any given topic is only a failure to the extent that success was possible in the first place. That is precisely why this strategy cannot be implemented alone. I can tell you about the history of disability rights movements in the wooded hills of Western Pennsylvania and can point you to others who know far more than I do. What can you tell me today about disability where you are? And what will you be able to tell me five or ten years from now?
Past is prologue, yes, yet we are allowed to write new books and update old ones.59 Moreover, exploring and introducing awareness of disability history into our work is not something we have to do alone, nor does it fall outside our area of responsibility. Documentation strategy—applied mindfully—is one path forward to filling the gaps in our archives where I and so many others hope to find ourselves.
Society of American Archivists Task Force to Revise Best Practices on Accessibility, “Guidelines for Accessible Archives for People with Disabilities,” https://www2.archivists.org/sites/all/files/SAA%20Guidelines%20for%20Accessible%20Archives%20for%20People%20with%20Disabilities_2019_0.pdf, captured at https://perma.cc/TSZ7-3SVK.
As of November 2019, section information can be found at Society of American Archivists, “Accessibility and Disability Section,” https://www2.archivists.org/groups/accessibility-and-disability-section.
Lance Fischer, “The Deaf and Archival Research: Some Problems and Solutions,” American Archivist 42, no. 4 (1979): 463–64, https://doi.org/10.17723/aarc.42.4.bt681l38560032x2.
Brenda Beasley Kepley, “Archives: Accessibility for the Disabled,” American Archivist 46, no. 1 (1983): 42–51, https://doi.org/10.17723/aarc.46.1.7275k33t7817w00u.
In fairness, both Kepley and Fischer were writing after the passage of the Rehabilitation Act of 1972 and prior to the Americans with Disabilities Act of 1990. The letter of the law was limited and based on a narrow, medical definition of disability.
I am not able to uncover any earlier works on disability in the archival literature. I suspect that while disability may have been mentioned in passing in literature prior to these resources, it was not a substantial enough focus in these instances to warrant referencing in abstracts or in keywords.
Lora J. Davis, “Providing Virtual Services to All: A Mixed-Method Analysis of the Web Site Accessibility of Philadelphia Area Consortium of Special Collections Libraries (PACSCL) Member Repositories,” American Archivist 75, no. 1 (2012): 35–55, https://doi.org/10.17723/aarc.75.1.a716w067468262h5.
Sara White, “Crippling the Archives: Negotiating Notions of Disability in Appraisal and Arrangement and Description,” American Archivist 75, no. 1 (2012): 109–24, https://doi.org/10.17723/aarc.75.1.c53h4712017n4728.
Gracen Brilmyer, “Archival Assemblages: Applying Disability Studies' Political/Relational Model to Archival Description,” Archival Science (2018): 95–118, https://doi.org/10.1007/s10502-018-9287-6.
Gracen Brilmyer, “I'm Also Prepared To Not Find Me. It's Great When I Do, But It Doesn't Hurt If I Don't”: Crip Time and Anticipatory Erasure for Disabled Archival Users,” Archival Science (2021), https://doi.org/10.1007/s10502-021-09372-1.
Laurie Block, “An Invented Archive: The Disability History Museum,” RBM: A Journal of Rare Books, Manuscripts, and Cultural Heritage 8, no. 2 (2007): 143, https://doi.org/10.5860/rbm.8.2.288.
Meghan R. Rinn, “Nineteenth-Century Depictions of Disabilities and Modern Metadata: A Consideration of Material in the P. T. Barnum Digital Collection,” Journal of Contemporary Archival Studies 5, no. 1 (2018), https://elischolar.library.yale.edu/jcas/vol5/iss1/1.
Diane F. Britton, Barbara Floyd, and Patricia A. Murphy, “Overcoming Another Obstacle: Archiving a Community's Disabled History,” Radical History Review 94 (Winter 2006): 213–27, https://doi.org/10.1215/01636545-2006-94-212.
National Endowment for the Humanities, “Funded Projects Query Form,” https://securegrants.neh.gov/publicquery/main.aspx?f=1&gn=PW-234683-16. Sadly, the proposed portal never came to fruition. A lightly edited version of the list of member institutions contained in the white paper lives on the SAA Accessibility and Disability Section microsite, https://www2.archivists.org/groups/accessibility-and-disability-section/recommended-resources, captured at https://perma.cc/A9CU-CFKP.
Western Pennsylvania Disability History and Action Consortium, “About the Consortium,” https://www.wpdhac.org/about-the-consortium.
Brian Keough and Amy C. Schindler, “Thinking Globally, Acting Locally: Documenting Environmental Activism in New York State,” Archival Issues 28, no. 2 (2003–2004): 133, https://digitalcommons.unomaha.edu/crisslibfacpub/17. See also Block, “An Invented Archive,” 141–54.
Senator John Heinz History Center, “About,” https://www.heinzhistorycenter.org/about.
Helen Willa Samuels, “Who Controls the Past,” American Archivist 49, no. 2 (1986): 115, https://doi.org/10.17723/aarc.49.2.t76m2130txw40746.
Jennifer A. Marshall, “Documentation Strategies in the Twenty-First Century?: Rethinking Institutional Priorities and Professional Limitations,” Archival Issues 23, no. 1 (1998): 60, http://digital.library.wisc.edu/1793/45866.
Marshall, “Documentation Strategies,” 69. Marshall is of the opinion that documentation strategy may work better in concept than in practice. I believe it can be used practically but must be applied strategically, as is the case with any appraisal strategy.
Society of American Archivists, Dictionary of Archives Terminology, s.v. “documentation strategy,” https://dictionary.archivists.org/entry/documentation-strategy.html, captured at https://perma.cc/99P5-NGP5.
Hans Booms, “Überlieferungsbildung: Keeping Archives as a Social and Political Activity,” Archivaria 33 (Winter 1991–92): 28.
Booms, “Überlieferungsbildung,” 25.
Booms, “Überlieferungsbildung,” 28.
Samuels, “Who Controls the Past,” 111.
Samuels, “Who Controls the Past,” 117.
Booms, “Überlieferungsbildung,” 28.
Frank Boles, “To Everything There Is a Season,” American Archivist 82, no. 2, https://doi.org/10.17723/aarc-82-02-21.
Keough and Schindler, “Thinking Globally, Acting Locally,” 133.
White, “Crippling the Archives,” 117.
Michelle Caswell, Marika Cifor, and Mario H. Ramirez, “‘To Suddenly Discover Yourself Existing': Uncovering the Impact of Community Archives,” American Archivist 79, no. 1 (2016): 58, https://doi.org/10.17723/0360-9081.79.1.56. The danger is a chicken-and-egg situation. It was not until a WPDHAC event attended by a dozen or so people using wheelchairs that I realized how impossible that usually is—or seems to be. I had to see the people who were usually missing from my daily experience before I could see their absence elsewhere and before I could notice the obstacles that engineer that absence. Symbolic annihilation may not be purposeful, but it is certainly not accidental.
In a way, this problem is also a solution to the idea that collecting to fill gaps is a strategy susceptible to archival “fads.” Just as we ask what events of the past have had lasting significance, we might ask: what absences have persisted?
Bridget Malley, “Telling the Story of Dixmont,” Western Pennsylvania Disability History and Action Consortium (January 2018), https://us15.campaign-archive.com/?u=50ddd468c635d4854dcff8137&id=d3b157298b, captured at https://perma.cc/YS2E-R2L9.
I do not intend to dwell on the horror stories in disability history because in those, too, there is a risk of stripping away autonomy, reducing the people involved to objects that these things happened to instead of subjects in their own right. Rather, I bring this up as an example to highlight once again why “past is prologue” must take silences into account.
As of 2019, the WPDHAC and the Heinz History Center are working to document the planned closure of two state centers, including furor around the economic disruption this will cause in the surrounding areas.
Samuels, “Who Controls the Past,” 116.
Doris Malkmus, “Documentation Strategy: Mastodon or Retro-Success?,” American Archivist 71, no. 2 (2008): 394, https://doi.org/10.17723/aarc.71.2.v63t471576057107.
Malkmus, “Documentation Strategy,” 388–89.
René Boatman, “A New Archival Model? An Examination of Documentation Strategy via the Fales Library & Special Collections' Downtown New York Collection,” Journal of Archival Organization 1, no. 2 (2002): 44, 48, https://doi.org/10.1300/J201v01n02_03.
White, “Crippling the Archives,” 109–10.
Malkmus, “Documentation Strategy,” 395.
White, “Crippling the Archives,” 116–18. Disability is not solely or always defined in medical terms. Britton et al. define disability similarly in their examination of efforts to develop disability history collections at the University of Toldeo. Britton et al., “Overcoming Another Obstacle,” 213–27.
Brilmyer, “Archival Assemblages,” 95–118.
Samuels, “Who Controls the Past,” 118.
As with any appraisal strategy, documentation strategy is best focused on what works for your institution. The point is not to collect everything under the sun but rather to enhance your strengths and add what is missing to the collective record while remaining true to the goals as defined.
Malkmus, “Documentation Strategy,” 399–401.
Keough and Schindler, “Thinking Globally, Acting Locally,” 121–35.
Samuels, “Who Controls the Past,” 120.
Samuels, “Who Controls the Past,” 111.
Keough and Schindler, “Thinking Globally, Acting Locally,” 126–27.
Western Pennsylvania Disability History and Action Consortium, “Media Items: Voices of Change Videos,” https://www.wpdhac.org/media-items.
Other ways in which the Heinz History Center has benefited is through additions to existing exhibits, hosting disability history events, highlighting new collections in publications and presentations, and the conscious addition of accessibility features in all of the above.
For a conceptual overview of how a community collaboration mindset has emerged in archives, see Terry Cook, “Evidence, Memory, Identity, and Community: Four Shifting Archival Paradigms,” Archival Science 13 (2013): 95–120, https://doi.org/10.1007/s10502-012-9180-7. For an overview of literature on community archiving, see Alex Poole, “The Information Work of Community Archives: A Systematic Literature Review,” Journal of Documentation 76, no. 3 (2020): 657–87, https://doi.org/10.1108/JD-07-2019-0140.
Arjun Sabharwal, “Digital Representation of Disability History: Developing a Virtual Exhibition,” Archival Issues 34, no. 1 (2012): 8, https://www.jstor.org/stable/41756159.
The Disability History Museum, established in 2000, provides virtual access to documents and images related to disability history—primarily in the United States. Block, “An Invented Archive,” 141–54. The Disability History/Archives Consortium, an NEH-funded project, published a white paper in 2018. Brenda S. McClurkin, The Disability History/Archives Consortium: A Portal to Disability History Collections, April 30, 2018, https://securegrants.neh.gov/publicquery/main.aspx?f=1&gn=PW-234683-16.
For a few examples, see Amelia M. Anderson, “Exploring the Workforce Experiences of Autistic Librarians through Accessible and Participatory Approaches,” Library & Information Science Research 43, no. 2 (2021), https://doi.org/10.1016/j.lisr.2021.101088; Patrícia Roque Martins, “Redefining Disability in Museums: Exploring Representation,” The International Journal of the Inclusive Museum 15, no. 1 (2021): 21–31, https:/doiorg/10.18848/1835-2014/CGP/v15i01/21-31; Katie Stringer Clary and Carolyn Dillian, “Printing the Past: Building Accessibility and Engagement through 3-D Technologies,” The Public Historian 43, no. 2 (2021): 41–62, https://doi.org/10.1525/tph.2021.43.2.41.
Marshall, “Documentation Strategies,” 69.
Mark Greene, SAA Accessibility Awareness Forum, 2010, http://files.archivists.org/conference/dc2010/Archival-Accessibility_Greene.pdf, captured at https://perma.cc/J7J8-43A5.
To those of you doing that writing, most especially my colleagues at the WPDHAC, the Heinz History Center, and the SAA Accessibility and Disability Section: Thank you. Through your work, our past—my past—is preserved for future generations.
ABOUT THE AUTHOR
Bridget Malley is a steering committee member of the SAA Accessibility and Disability Section. Malley worked as a contractor with the Western Pennsylvania Disability History and Action Consortium (WPDHAC) from January 2019 to July 2020 and is now serving on the WPDHAC steering committee. Malley received an MLIS from the University of Wisconsin–Milwaukee in December 2019 and is a records and information management specialist with the US Environmental Protection Agency. They are the recipient of the 2020 Theodore Calvin Pease Award from the Society of American Archivists (SAA). The award, presented during SAA's virtual Annual Meeting, August 2–6, 2020, recognizes superior writing achievements by students of archival studies. Malley's paper, “Documenting Disability History in Western Pennsylvania,” was nominated by Amy Cooper Cary, head of Special Collections and University Archives at Raynor Memorial Libraries, Marquette University.