Disability in the 21st Century: A Virtual Talk with Advocate Valerie Fletcher | BU Today

Jennifer E. Engen

Valerie Fletcher’s life’s work has centered on one overarching question: who are we not thinking of? 

Describing her career as divided between design and public mental health, Fletcher says, “I’ve had a very lucky arc. I went from working in direct care at a state psychiatric hospital to being the deputy commissioner of operations in the [Massachusetts] Department of Mental Health.” There, she helped guide the state’s transition away from institutions towards community-based mental health services. But since 1998, Fletcher has used design to enhance the experiences of people of all ages, abilities, and backgrounds in her role as executive director of the Institute for Human Centered Design (IHCD). 

A Boston-based nonprofit, IHCD aims to go beyond legal accessibility requirements to “design places, things, communication, and policy” that work for all people, tackling everything from how to make cultural institutions more easily navigable to comprehensive user testing of websites and apps. IHCD also houses the New England ADA Center—one of just 10 ADA (Americans with Disabilities Act) centers in the country—which seeks to make disability rights laws and codes more accessible to businesses, government bodies, and the broader public. 

On Friday, April 8, Fletcher will speak about the IHCD’s latest project, a short film titled The Changing Reality of Disability in America: 2020 at a virtual event hosted by BU’s Staff and Faculty Extend Boston University Disability Support (SAFEBUDS). The presentation is part of BU Diversity & Inclusion’s Learn More series and begins at noon.   

The film, and the accompanying 40-page research report, sought to document the evolving patterns of disability in the US population—such as the relationship ​​between environmental exposure and learning disabilities and the rise of chronic illness—identify gaps in knowledge, and understand how people relate to the concept and term “disability.” The project was funded by the Allan R. Meyers Memorial Project, which continues the legacy of Allan R. Meyers, a former BU School of Public Health and BU School of Medicine professor, who was deeply committed to disability rights and creating physical environments where all people could flourish. 

Although it is not required, Megan Sullivan, a College of General Studies associate professor of rhetoric and a SAFEBUDS leadership board member, recommends registrants check out IHCD’s film—or the accompanying 40-page report—before the talk. “In my 25 years at Boston University,” Sullivan says, “I have always tried to broaden our discussion of disability,” adding that she hopes that attendees of the talk will come away thinking more about “how it is that we define disability.”

BU Today spoke with Fletcher in advance of her talk about the goal of human-centered design and how the conversation around design, access, and disability has changed over the course of her career.

This interview has been condensed and edited for clarity.

Q&A

Valerie Fletcher

BU Today: What is human-centered design?

Valerie Fletcher: The original name of the Institute [for Human Centered Design] was Adaptive Environments. We renamed the organization in 2008 because it no longer seemed appropriate: we were doing a tremendous amount of pioneering consulting and design work in what was called, in various parts of the world, “universal design” or “inclusive design.” At that time, the debate over which term to use was still raging. So, we opted for “human centered design.”

For us, human centered design is about anticipating the ordinary diversity of ability, age, and culture. Secondly, it’s about the power of design to really change our experience: design can minimize limitations. It can enhance skills and talents. And it can enrich experience, but you’ve got to be thinking about it. It’s way beyond, “just tell me what I have to do.”

It is our rock-solid conviction that the engagement of people at the edges is actually a very reliable route to the richest experiences. And I think BU is taking some leadership in that. But we still have miles and miles to go to really recognize that a pattern of siloed isolation—by race, by gender, by age group, by education, by economic status—does us all a disservice.

BU Today: The IHCD’s film focuses on the changing reality of disability in America. Thinking about this project, and your career more generally, how has the conversation around design, access, and disability changed in recent decades?

Valerie Fletcher: When we decided to do the film and the report, in 2020, it was in the context of the 30th anniversary of the passage of the Americans with Disabilities Act, and our frustration with a habit of thought about disability that has grown over time. This habit of thought was born partly of the legal standards [of disability] and partly of the remarkable moment that was the birth of the disability rights movement in America—a movement that said “disability is an identity.” “Disability” came to mean people who use wheeled mobility, people who read braille, or people who are deaf and use American Sign Language. All of those are incredibly legitimate and important categories of the experience of disability, but they’re small categories. For example, there’s 10 times more people who have trouble walking than use wheeled mobility. Probably more than 90 percent of people who are legally blind have some sight. But if we forget that, we really miss creating opportunities for an equitable experience.

Funded by the Allan Meyers Memorial Project, the IHCD’s film The Changing Reality of Disability in America: 2020 reexamines the experience of disability in America, highlighting the voices of veterans, those impacted by environmental exposure, and those aging in place. 

Now, one of our big priorities is to focus on who’s left out—who are we not thinking of? In the late fall, our New England ADA Center [which is housed within the IHCD] began a five-year research project that looks at attitudes towards the word “disability,” and whether that word does or doesn’t work for people. For some people, it may resonate as a reality, but not as an identity, so we’ve got to figure out how to talk about it.

The other thing that we’re [now] looking at is the extraordinary rise of the spectrum of brain-based reasons for disability. And that includes all kinds of things: mental health, learning disabilities, neurodiversity, brain injury, neurological conditions. So, we’re looking at that spectrum and trying to figure out: what changes can we make to the physical, information, and communication environment to be more inclusive? 

We’ve also learned a tremendous amount through the experience of the COVID-19 pandemic. First of all, we learned that people [could work effectively] at home. Many people with disabilities have been begging for that accommodation for years, but were told that they couldn’t be trusted to get the work done. Now, for many people, working from home is a means of being more productive. Zoom is way friendlier than a live event for people with all kinds of issues, including a lot of brain-based issues. So, we’ve come to appreciate where design can help level the playing field, and now we’ve got to figure out what to carry forward [as COVID wanes]. We’ve learned that [disability] is not just another subcategory, it’s really a human experience, like the vulnerability and isolation we all felt during COVID.

BU Today: As a university community, how can we better incorporate human-centered design into our everyday practices?

I think it’s a really good question. One of the realities today is that the overwhelming majority of people don’t disclose a disability. You might have had an IEP [Individualized Education Program] in high school, but when you go onto college, it’s not anybody’s responsibility to identify whether you have a disability or not—it’s on you. You either seek out an accommodation, or you keep your mouth shut and take your chances. That’s a really pervasive norm. In a sense, we’re kind of missing an opportunity to share those experiences and to figure out what would make life better and easier for those people. 

COVID left us with some very big opportunities for change, including a pretty radical new way of thinking led by young people about mental health as a disability. I come from a generation that was very invested in changing the world, and we did change the conversation, but I think the conversation is changing again. Young people are leading the climate change movement and the movement to remove the stigma of mental illness. I’m talking to young people, undergraduates, and even high school kids who are saying: “What’s the issue? This is the same thing as somebody in your family with heart disease or diabetes.” Young people are also interested in issues like counting disability among people in jails and prisons—it’s probably more than 50 percent of the population! Anyway, I’m really optimistic. I’ve been at this a long time, and I think it’s the first time I’ve actually thought we might be “there.” I really do.

Disability In the 21st Century: A Talk with Valerie Fletcher is today, Friday, April 8, at noon. Register here to attend virtually. Learn more about SAFEBUDS here or follow them on Instagram.  

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Disability in the 21st Century: A Virtual Talk with Advocate Valerie Fletcher

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