“Nothing about us without us:” engaging at users in at research

The powerful slogan “nothing about us without us” has been a motto of the disability rights movement for decades – and still remains a powerful reminder of the work we have yet to do. While assistive technology (AT) research is motivated by the needs of people with disabilities, as members of the AT community we recognize that there remains an alarming lack of representation of people with disabilities in AT research and development roles. In the U.S., people with disabilities are less likely to work in STEM fields when compared to their peers without disabilities; further, despite comprising 25% of the population, people with disabilities make up only 1% of medical students (CDC, AAMC). The lack of representation in STEM and medical fields translates into fewer people with disabilities leading and even participating in AT research and development. To add to the efforts being done to increase representation, we aim to first state that the Assistive Technology Journal believes in and supports engagement of AT users in all aspects of AT research; and further, we prioritize publications that demonstrate such inclusion.

Disability rights have evolved greatly over the last century, first gaining significant traction in the U.S. during the civil rights movement of the 1960”s. Around this time, a group of disability activists formed the independent living movement, which asserted that people with disabilities should be considered the experts on their own needs. The broader disability rights movement continued to protest discrimination and advocate for accessibility, leading to the passage of the (U.S.) Rehabilitation Act of 1973 (and subsequent 1977 regulations), which prohibited discrimination in federal programs and services. In 1990 the Americans with Disabilities Act expanded anti-discrimination policies to public entities and required most workplaces and public spaces to make reasonable accommodations for people with disabilities. During the 1990”s, the phrase “nothing about us without us” was popularized by James Charlton’s book of the same name, and spread as a rallying cry throughout other liberation movements as well.

Of course, the disability rights movement has global origins: Charlton’s Nothing About Us Without Us book begins by stating that he heard the phrase from South African disability activists, who themselves heard it from Eastern European activists. The motto was the theme of the 2004 United Nations’ International Day of Persons with Disabilities and was associated with the 2008 Convention on the Rights of Persons with Disabilities, a human rights treaty to protect the rights and dignity of people with disabilities. As of May 2022, the treaty has been ratified by 185 countries and signed by 164 countries – though there is still considerable debate on its effectiveness in preventing discrimination and increasing accessibility around the world.

So recalling these efforts and the efforts of others, the question we pose is: how can we at Assistive Technology champion the philosophy of “nothing about us without us?” We can start by encouraging engagement of AT users at every possible stage of AT research and development. We can strive to make AT research processes more inclusive and to make AT user engagement more authentic. Instead of perpetuating the idea of people with disabilities as the “researched” and scientists or practitioners as the sole “researchers,” we can share ownership with AT users as “co-researchers” (Layton et al., 2022). We acknowledge that making significant changes will take time and funding, and we strongly believe the investment is worthwhile. Below we give a non-comprehensive list of practical suggestions and provide references with more details.

1. Develop an advisory board composed of representative persons with disabilities who will oversee and provide input into the research being conducted.

2. Implement human-centered design (Cooley, 2000; Holeman & Kane, 2020), a complex iterative process that prioritizes human values and experiences. Users are consulted throughout the process, and designers seek to build understanding and empathy across all stakeholders.

3. Implement participatory design (Spinuzzi, 2005), or participatory research approaches, frameworks for including the users across all forms of AT research. Participatory approaches emphasize that instead of research and design being done for the users – research and design is being done with the users. Participatory approaches can be combined with human-centered design (Björling & Rose, 2019). Specific frameworks have been developed for engaging persons with disabilities – for example, Participatory Action Design and Engineering (PADE) (Ding et al., 2007).

4. Regardless of the research or design approach, gather input from AT users during the early phases of a project. Useful approaches include focus groups and storyboards.

5. Make it common practice that if an AT prototype has been created, it must be trialed with AT users to evaluate such attributes as feasibility, usability, safety, functionality, and acceptability. Also recognize that this stage of the research process can take on different levels depending on the state of the prototype.

We cannot understate the importance and potential benefits of increasing AT user representation and ownership of the research process. The Assistive Technology Journal is committed to prioritizing the publication of studies that demonstrate AT user ownership and/or participation in the research process, as authors, collaborators, and research participants Finally, we welcome submissions and ideas of best practices for increasing AT user engagement as co-researchers.

Disclosure statement

No potential conflict of interest was reported by the author(s).