The Disability Visibility Project

Introduction - Alice Wong

“These stories do not seek to explain the meaning of disability or to inspire or elicit sympathy. Rather, they show disabled people simply being in our own words, by our own accounts.” -Alice Wong

Alice Wong is an Asian-American disabled speaker, writer, editor, and the founder and director of the Disability Visibility project. Wong founded the Disability Visibility Project in 2014, in partnership with StoryCorps. Disability Visibility records the stories and oral histories of disabled people. In 2020, Wong edited and published an anthology of stories from the project. In her introduction to Disability Visibility (2020) she explores themes of representation, the power of storytelling, and the disabling nature of an ableist society.

The following questions are taken from the Disability Visibility Discussion Guide by Naomi Ortiz.

Reflections on the Introduction

I grew up seeing very few images that looked like me in books, film, or television…how my worldview would have changed if I had seen someone like me as a glamorous, confident adult. -Alice Wong

1. Do you see images which look like you in the media? How has that impacted your worldview?

People like me (non-disabled white women) were in nearly every book, show, and movie I consumed throughout my childhood and young adulthood. In some ways the question Wong asks in her introduction - how in absence, does one “realize that something is even missing?” - is reversed for me: In the overwhelming presence of something, how do you realize it is even there? Specifically in regards to disability, this type of media representation impacted my worldview in subtle ways. I never questioned that the world would work for me, or that I would have community, or that the communities I was part of would have both identity and voice. I never wondered if society would restrict me and disable me by denying me access to things like transportation, housing, employment, agency, and belonging. While issues surrounding the representation of women remain complex, and the visibility, influence, and recognition of women in certain spheres is incomplete in many ways, the issue of overall visibility in society is not something I have felt as a non-disabled woman.

Alice Wong gives a brief introduction to the Disability Visibility project and explains the importance of disabled people being able to tell their own stories.

2. Why do stories from everyday people matter?

I began to notice and save stories about disability that meant something to me….In surrounding myself with these stories I found and developed my own voice”- Alice Wong

Stories from everyday people matter because, while most people are not important people, all people are important. In other words, very few of us are famous or powerful, but all of us have stories to tell. If the only speakers at the table are those with platforms, influence, and societal or historical significance, we only continue to marginalize the very people we wish to include. Stories from everyday people matter because they negate the exclusivity of influence and power. If storytelling is, as Harriet McBryde Johnson said, “an activity not an object,” it is an activity that creates community and identity, but only when the diverse and authentic experiences of ordinary people are among the stories told.

3. Wong states, “Staying alive is a lot of work for a disabled person in an ableist society…”

Disability is mutable and ever-evolving…Disability is sociopolitical, cultural, and biological. Being visible and claiming a disabled identity brings risks as much as it brings pride. -Alice Wong

Wong’s involvement in political advocacy for disabled people demonstrates how disabled people have to engage in the work of protest to be visible in society and recognized in the political arena. Political representation and power affect quality of life and sometimes life itself, as they affect access to everything from medical care and housing to jobs and education. Wong recounts the massive protest that occurred in April 1977 when Deaf and disabled people protested the years long delay on enacting laws that recognized disability rights as civil rights and prohibited discrimination based on disability. Even now, disabled people are frequently an afterthought in discussions about diversity, inclusion, and rights, especially when disability, race, ethnicity, and sexual identity intersect. When you have a disabling society that marginalizes and ignores the needs and rights of disabled people, staying alive as a disabled person does indeed take “a lot of work.”

Part 2: Unspeakable Conversations - Harriet McBryde Johnson

Warning: the following section discusses infanticide, eugenics, and assisted suicide

Harriet McBryde Johnson was a disabled author, attorney, and disability rights activist. In 2002, Johnson was invited to Princeton University by Peter Singer, a bioethics professor who has been called the “most influential philosopher of our time” (Johnson, 2003). Singer has written extensively on animal rights and has advocated that parents of disabled children should have the right to kill those children at birth, that in some circumstances it should always be lawful to kill individuals with severe cognitive impairments, and is a proponent of assisted suicide (Johnson, 2003). Johnson was invited to give an opposing view and her essay, “Unspeakable Conversations,” published in the New York Times Magazine in 2003, details her conversations with Singer, her visit to Princeton, her experiences as a disabled person, and her views on disability rights. Johnson passed away in 2008.

1. If the presence or absence of a disability doesn’t predict quality of life, what does?

Are we “worse off”? I don’t think so. Not in any meaningful sense. There are too many variables…We take constraints that no one would choose and build rich and satisfying lives within them. We enjoy pleasures other people enjoy and pleasures peculiarly our own. We have something the world needs. – Harriet McBryde Johnson

Quality of life is such a nebulous term. We use it like a yard stick to compare our lives to others and theirs to ours, but it’s a subjective measurement at best. And when “quality of life” is defined solely through the lens of ableism, it becomes a weaponized term that can justify all manner of injustice. In her essay, Johnson points out that the public in general, and physicians in particular, tend to underestimate the quality of life of disabled people when compared with how disabled people assess their lives themselves. But what if quality of life was defined, not by disability, but by dignity? By agency, social belonging, and opportunities to pursue interests, to create change, to be needed, to be heard? If disability is not a predictor of quality life, than dignity certainly is. Defining quality of life in terms of dignity makes it an interdependent issue for which we are all mutually responsible. It’s our collective response to disability and differences that define and predict quality of life for us all.

2. Why is killing such an appealing solution to the “problem” of disability?

What worries me most about the proposals for legalized assisted suicide is their veneer of beneficence- the medical determination that for a given individual suicide is reasonable or right. It is not about autonomy but about nondisabled people telling us what’s good for us. -Harriet McBryde Johnson

Singer takes the position that parents should be allowed “kill disabled babies and replace them with nondisabled babies who have a greater chance at happiness” and is a proponent of assisted suicide for ill and disabled people. It’s the pursuit of a twisted dystopia- one where the internal states, value, and quality of life of disabled people are presupposed by those who hold power in society. The ideas are not new. This is the same rhetoric peddled by Nazism and the eugenics movement, so why does it still seem like a reasonable solution for some? They dress the argument with trappings of morality and ethics- that it would reduce suffering all around- but it boils down to calculations of cost and the consideration of self above all else. In her essay, Johnson paraphrases part of Singer’s argument, “It’s all about allowing as many individuals as possible to fulfill as many of their preferences as possible.” Unless, of course, the individuals in question are disabled infants who aren’t yet able to make choices, or disabled people whose “choices are structured by oppression” (Johnson, 2003). Ultimately, it is an argument that looks at only one side of cost by failing to ask what it costs us to lose disabled people.

3. What elements of Harriet McBryde Johnson’s story present the case for why disabled lives are valuable?

…I have been sucked into a civil discussion of whether I ought to exist…Yes, I am shaking, furious, enraged- but it’s for the big room, two hundred of my fellow Charlestonians who have listened with polite interest, when in decency they should have run him out of town on a rail. -Harriet McBryde Johnson

It would be easy to point to Johnson’s tremendous intellect, her craftmanship as a writer, and her contributions to the disability rights movement as elements of her story that made her life valuable. I struggle, however, with drawing this conclusion. It’s still defining the value of human life on a subjectively monetized system: this person can contribute that much, and that person cannot, and so this person has more value than the other. When that concept is extended a little further, it quickly leads to unintended and dangerous places. How many degrees away from genocide are we, exactly, when we define the value of life by an equation that demands contribution in its sum?

If we remove the question of contribution, what are we left with? The term “the sanctity of life” has unfortunately been hijacked for political purposes, but it is ultimately a concept I cannot get away from. I suspect Johnson herself, being a staunch Atheist, would disagree with my use of it. Nonetheless, it is where I both start and end when I find myself trying to explain why disabled lives- why any lives- are valuable. What if Johnson’s story had instead been that she was so crippled by depression that she never finished writing a single thing? Or that she had been born with profound cognitive delays and lived out her life quietly enjoying her own peculiar pleasures? Would her story still present a case for the value of disabled lives? Yes, if her life had value, based on not on her ability or disability, but simply because she was. Disabled lives are valuable because they are, and as such, are no more or less valuable than non-disabled lives. In an ethical and just society, surely offering life, and assistance with life, is a better solution than offering assistance with death.

Additional Resources:

It's Our Story links to Harriet McBryde Johnson Videos