Disability Visibility : First-Person Stories from the Twenty-first Century

by Alice Wong

I have resolved that what would heal me most is making peace with my disability, to stop warring with my body. I want acceptance.

I want to see what happens if I can simply accept myself for who I am: battered, broken, hoping for relief, still enduring somehow.

I know only that in chasing to achieve the person I once was, I will miss the person I have become.

It’s important to have people believe in you and to expect that you’re going to succeed. People need to have high expectations for people with disabilities because then they’ll give them opportunities to learn and grow.

We can’t go back. We can’t go back to a time when people are moved against their will to places where they have no opportunities to learn, grow, and contribute. We need to keep moving forward.

When we were in the institution, we didn’t have a voice. We were thought to be incompetent, so no one took the time to teach us things. But people can accomplish great things with support. Having an intellectual disability doesn’t limit what you can contribute. Being put in institutions limits what people can do and guarantees that people will be dependent for the rest of their lives.

Anyone can become disabled at any time. We are people just ...

Cultural norms don’t encourage trans and disabled people to dress stylishly or loudly. Society wants us to “blend in” and not draw attention to ourselves. But what if we were to resist society’s desire to render us invisible? What if, through a dress reform, we collectively refuse to assimilate?

In the face of what society tells us to hide, we are unapologetic individuals who want to celebrate and highlight our bodies. Instead of hiding the aspects of our identities that make us unique, we are Radically Visible.

Clothing is your second skin; it changes the way you hold yourself. I consider it armor because it has the power to give you the confidence and strength to feel comfortable in your first skin.

I suggest a politically forceful aesthetic style called Radical Visibility. Physical visibility is an important step toward political/social freedom and equality.

Radical Visibility is a call to action: to dress in order not to be ignored, to reject “passing” and assimilation.

People seem to have an innate ability to say the worst possible things at exactly the wrong time where illness is concerned. You would think that people who work in healthcare would be different, but they are, after all, still people.

I learned how to put my listening face to practical use during medical school. All that you’re really doing when you interview a patient is asking them to tell you a story. All the patient really wants is for you to listen to them. That’s what we all want, isn’t it? It’s one of our most fundamental drives. To be seen. To be heard. To be understood.

The erasure of disabled people is one of the most common international crimes against humanity.

I mentally steel myself for disagreements from relatives whenever I bring up headlines of violence or oppression involving victims and/or abusers who share our ethnicity. I find myself strategizing my battles, not wanting to lose my hold on any scrap of presence I’ve struggled to claim, both within my family and outside of it. Every loss or win is not a personal best kept just for me; instead, it’s a scorecard passed on through generations and across oceans. Too much is at stake.

Taking up space as a disabled person is always revolutionary. To have a name is to be given the right to occupy space, but people like me don’t move easily through our society, and more often than not survive along its outermost edges.

It is a privilege to never have to consider the spaces you occupy.

As a marginalized disabled person I want it all: for all of us to remain as fixtures in our shared world views, for the spaces to do more than survive, and for our voices and presence to experience the indelible freedom that comes with being louder.

Embracing my own joy now means that I didn’t always. Hope is my favorite word, but I didn’t always have it. Unfortunately, we live in a society that assumes joy is impossible for disabled people, associating disability with only sadness and shame.

I’m not a cis heterosexual white male wheelchair user, so in pop culture, I don’t exist. That’s not okay because it’s not reality. I exist, I am a real person behind these words, and I deserve to be seen.

So I live as unapologetically as I can each day—for myself, of course, but also for those who will come up after me, who will walk through the doors I hope to break down.

I may not find joy every day. Some days will just be hard, and I will simply exist, and that’s okay, too. No one should have to be happy all the time—no one can be, with the ways in which life throws curveballs at us. On those days, it’s important not to mourn the lack of joy but to remember how it feels, to remember that to feel at all is one of the greatest gifts we have in life. When that doesn’t work, we can remind ourselves that the absence of joy isn’t permanent; it’s just the way life works sometimes.

I was once a very self-deprecating and angry person who scoffed at the idea of happiness and believed that I would die before I ever saw a day where I felt excited at the prospect of being alive.

My joy is my freedom—it allows me to live my life as I see fit. I won’t leave this earth without the world knowing that I chose to live a life that made me happy, made me think, made me whole. I won’t leave this earth without the world knowing that I chose to live.

When energy becomes a limited resource, one must become adept at budgeting it wisely—using “spoons,” a metaphor writer Christine Miserandino came up with to explain living with lupus, to use energy when you have chronic illness.

Many women with chronic illness can be sick for years before they’re finally taken seriously and diagnosed. Blair told Roberts she went for years without being believed, and therefore without being treated.

Internalized ableism is so hard to overcome partially because those beliefs are so often reinforced in society. It’s not just in our heads. It’s in our daily lives and experiences…and then it gets in our heads.

Disabled writers who have other intersections of oppression—like if they’re queer or transgender or racialized or poor—are more likely to have their voices silenced because of lack of capacity, the inability to access appropriate medical care, or financial precarity. We are less likely to read their works. Their brilliance might remain unshared.

I want to use the dedication page of my novel to acknowledge both the beauty and transformational force of interdependence and the ways our society fails at it. The light and the shadows of disability and care. The ways in which it lifts many of us up and the ways it leaves so many of us alone and voiceless.

Independence is a fairy tale that late capitalism tells in order to shift the responsibility for care and support from community and state to individuals and families. But not everyone has the personal capacity, and not everyone has the family support. And the stories we tell about bootstraps tell us that it’s the fault of an individual if they don’t thrive. They’re just not trying hard enough.

We need more disabled voices not just because disabled people are brilliant and talented and have so much to offer and say but also because disabled people face an incredible amount of dehumanizing ableism that shapes and destroys their lives. And one of the best ways to combat that is through stories.

Disabled voices like Wang’s and others are needed to change the narratives around disability—to insist on disabled people’s humanity and complexity, to resist inspiration porn, to challenge the binary that says disabled bodies and lives are less important or tragic or that they have value only if they can be fixed or be cured or be made productive.

We are often only as strong as our friends and family make us, only as strong as our community, only as strong as the resources and privileges we have.

It is hard to be a pro-choice disabled person who understands that believing in bodily autonomy means you have to support the idea that other people—your friends, your peers, your siblings—may choose to abort a pregnancy because their child could be like you. Yes, it’s hard. But that’s why it’s a conversation we have to have, because if we don’t, decisions about us and our futures get made by others, without us.

We also live in a country where Buck v. Bell—the 1927 U.S. Supreme Court case in which the sterilization of people with disabilities was ruled constitutional—has never been overturned.

The body is something changeable—anyone may develop a disability at any point.

Information access empowers us to flourish. It gives us equal opportunities to display our talents and choose what we want to do with our lives, based on interest and not based on potential barriers. When we give people the opportunity to succeed without limits, [it] will lead to personal fulfillment and a prospering life.

I think that science is for everyone. It belongs to the people, and it has to be available to everyone, because we are all natural explorers. I think that if we limit people with disabilities from participating in science, we’ll sever our links with history and with society.

I didn’t think I was “disabled enough” to let my disability hinder me. So I tried to overcome it.

The day I started on my journey to getting better by taking medication—by denying the world my suffering and instead giving myself permission to live healthier while making art—was the day I started rebuilding myself into the strongest version of me. Every day, one more brick, with every word I write, I build myself higher.

Crip time means listening to the broken languages of our bodies, translating them, honoring their words.

Crip time is sick time. If you work a nine-to-five, forty-hour-a-week job, what is defined as full-time work in the United States, then (if you’re lucky) you accumulate a certain number of sick days. There is always a strange arithmetic to this process: maybe for every eight hours you work, you accrue one sick hour. Or maybe one for every twenty work hours, or every forty. It’s never a one-to-one ratio: you have to work hard to earn the time to be sick. The assumption, of course, is that we will not be too sick too often.

And on a deeper level, being a crip vampire spins me back into that whirlpool of time travel. I look twenty-five, feel eighty-five, and just want to live like the other fortysomethings I know. I want to be aligned, synchronous, part of the regular order of the world.

Like the leaves just now turning as the year spins toward its end, I want sometimes to be part of nature, to live within its time. But I don’t. My life has turned another way. I live in crip time now.

I’d try to mow past my limited interpersonal skills, my strong sensitivities to light/sound, and the incessant pumping of adrenaline in my system as a result of the stress of having to “play” neurotypical at all times. I failed.

I got pregnant. I became symptomatic. I am unable to “mask” autism symptoms—hypersensitivity to sound/light/smells, limited tolerance for social situations, obsessive focus on tawdry details, and seemingly exaggerated responses to physiological discomfort—when I am in physical pain, and my pregnancy was very difficult.

The concept of entitlement is familiar jargon in discussions of race and class, and it is just as widespread in the realm of disability. It’s the idea that we are acting as if someone owes us something rather than merely asking to be treated with the respect and human dignity we deserve. It is the belief that people of a certain status or apparent condition have no right to demand better because we should just be happy with whatever we get. We should be happy we have anything at all.

just knowing your rights (or your worth or value) will never be enough if you are powerless to force someone else to respect them.

I would have felt better if he had wet himself. At least then his urinating wouldn’t have felt like an intentional, rational choice, but an unavoidable emergency. I would have felt as if he did it because he had to, and not simply because he could.