National Disability Movement History Distributed Living History Museum Concept

From Devva Kasnitz
disabilityhistory23@gmail.com
Friends of Disability Justice Cultural History
 

Mission:

​​​​​​​The tentatively named Disability History and Culture Collective is an intersectional alliance of disability movement advocates and disability studies scholars working individually and in groups and institutions to establish and maintain: 1) a new website-based nonprofit with a fully searchable public Directory of accessible public living history networks in a next-generation Information and Computer Technology database of existing, planned, and future disability history resources, including a program to find and preserve undigitized collections, 2) a program to promote research that supports future societal growth via hosting and training people to create interlinked professional, amateur, and classroom virtual exhibits, and 3) to ultimately establish a full virtual museum with widely placed local and topical affiliates, perhaps as part of the Smithsonian Affiliates program.

Amid pandemics, schools online, and a long slide into virtual worlds and digitized history, disability rights and justice movements, accompanied by the academic articulation of disability studies, have emerged as points of innovation as well as vulnerability. People who live with disability are told to shelter because of vulnerability. At the same time, technology first developed for disability access has become mainstream with a not unexpected loss of disability accommodation power. An example is speech recognition programs, while now free or inexpensive they teach the user to speak as the software requires as opposed to the reverse in the original disability-related innovation. This is beginning to change again as artificial intelligence is trained to non-standard voices.

The changes in public concepts and contexts of disability in the last hundred years are remarkable, innovative, and instructive about what it means to be human. To maximize learning from these experiences they must not only be captured and preserved but available to all in the most creative and flexible manner possible. 

At the time of her death, Judy Heumann, arguably the best-known woman in global disability advocacy, was working with a few others to conceptualize a national disability rights museum. The Smithsonian, with the largest existing disability-related collection, figured prominently. Her death galvanized her community to forefront these efforts as Disability History and Culture Collective. Within three months this still-growing group of 250 people started talking and meeting in various ways to collectively think about disability history. In addition, the group Friends of Disability Justice Cultural History emerged as the fundraising arm. 

More Detail:

A few challenging, and at first glance seemingly conflicting, truths immediately emerged to test our ethics.

WHO:  Although there is an “us”, it is complex, contested, and varies in every demographic. Some excluded, minimized, or overlooked demographics such as BIPOC+ and LGBTQ are self-organized. Others, often diagnosis-specific groups, are organized by others for the disabled. For example, while recognition of the importance of disability history in general is growing, with it we mark the value of preserving and promoting the historical records of psychiatric service users/survivors and their experiences as an underrepresented disability group encompassing disproportionate numbers of people of color and other stigmatized demographics. Our working structure immediately involves mentoring. We acknowledge a commitment to maximum diversity and to draw both mentor and mentee leadership from all as our first challenge and a practical and ethical necessity. 

WHY:  Given the amount of effort and resources this multifocal project will take and the other demands on us, is this what we need? For whose benefit is this project and will it sidetrack more important equity-creating activities? We must make the effort relevant to tomorrow’s needs, a living history. It must also model future mainstream disability education, accessibility standards, and remote access. If it doesn’t explore past mistakes and future solutions, it is unethical. 

WHAT:  There are more ongoing projects to preserve disability “collections” than anyone imagined. This is in large measure due to the age of and deaths of the disability movement leaders. Some collections are stellar. But many existing critical efforts are underfunded and understaffed or volunteer. Their long-term sustainability is unsure. Many collections are “safe” but in a VERY long and unrealistic queue to be cataloged, digitized, and coded. Others are in danger of imminent and complete loss. Many are idiosyncratically digitized and cataloged. Meanwhile, there are many people embarking on new efforts, overwhelmed with data, and open to coordination. There are also important missing pieces that will require active intentional research to find. Just as everything about disability in academia is not disability studies, not everything about disability in the past is disability movement history. We must all coordinate and express what lenses we use to be ethical collectors.

HOW:  This venture involves both a new nonprofit membership-based Disability History and Culture Collective (DHCC) dedicated to the goals articulated by the disability community and the companion fundraising “Friends” group. DHCC will serve as a hub and place to share opportunities and goals. Separate from but in coordination with existing groups, it is starting to serve the public immediately as an information node connecting them to disability collections while it also works to create new opportunities.