Home > Author > Alice Wong
21 " A lot of folks equate the manic energy of being bipolar with the creative spark that drives artists to brilliance. They point to so many great artists in history who lived with mental illness and say, “There it is, that energy, that’s what made them great!” Except for so many artists, mental illness didn’t make them great. It made them ill. And if they weren’t careful, it made them gone. "
― Alice Wong , Disability Visibility: First-Person Stories from the Twenty-first Century
22 " Crip time is time travel. Disability and illness have the power to extract us from linear, progressive time with its normative life stages and cast us into a wormhole of backward and forward acceleration, jerky stops and starts, tedious intervals and abrupt endings. Some of us contend with the impairments of old age while still young; some of us are treated like children no matter how old we get. "
23 " What I have found much harder to let go is the memory of my healthier self. With each new symptom, each new impairment, I grieve again for the lost time, the lost years that are now not yet to come. This is not to say that I wish for a cure—not exactly. I wish to be both myself and not-myself, a state of paradoxical longing that I think every person with chronic pain occupies at some point or another. I wish for time to split and allow two paths for my life and that I could move back and forth between them at will. "
24 " For crip time is broken time. It requires us to break in our bodies and minds to new rhythms, new patterns of thinking and feeling and moving through the world. "
25 " This year when I run my tongue around my mouth, know I am sharpening those new bones into teeth. "
26 " So many disabled people live short lives, largely because of social determinants of health like lack of healthcare, inadequate housing, or unmet basic needs such as clean air and water. "
27 " Storytelling itself is an activity, not an object. Stories are the closest we can come to shared experience….Like all stories, they are most fundamentally a chance to ride around inside another head and be reminded that being who we are and where we are, and doing what we’re doing, is not the only possibility. —Harriet McBryde Johnson, Too Late to Die Young: Nearly True Tales from a Life (2006) "
28 " I don’t understand it,” I continued. “These things, they just keep happening, and I know it has to mean something. It has to. I want my suffering to mean something. I want this pain to matter. "
29 " Storytelling can be more than a blog post, essay, or book. It can be an emoji, a meme, a selfie, or a tweet. It can become a movement for social change. "
30 " 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. The reality of disability and joy means accepting that not every day is good but every day has openings for small pockets of joy. "
31 " But Carol Gill says that it is differential treatment—disability discrimination—to try to prevent most suicides while facilitating the suicides of ill and disabled people. The social science literature suggests that the public in general, and physicians in particular, tend to underestimate the quality of life of disabled people, compared with our own assessments of our lives. The case for assisted suicide rests on stereotypes that our lives are inherently so bad that it is entirely rational if we want to die. "
32 " Art is supposed to make you feel something, and I began to realize my appearance was my art. My body, my face, my scars told a story—my story. But I guess that’s how life works sometimes—noticing beauty only in retrospect and poetry, in silence. "
33 " But at what cost? I mean, don’t get me wrong: I would have given almost anything to be rid of that pain. Yet I have spent my year alternately living on a heating pad or getting tests. I have accomplished survival. I still have so many things “wrong” with my body, and I am tired of being poked and prodded. Perhaps none of this makes sense. Or perhaps it makes sense only if you live through it: the hope, the barrage of tests, the self-blame when your body still refuses to cooperate and just get better. There is a cost to pursuing miracle cures. It is a high cost. "
34 " Disabled people caring for each other can be a place of deep healing,” says Leah Lakshmi Piepzna-Samarasinha in Care Work: Dreaming Disability Justice. "
35 " This may feel true for every era, but I believe I am living in a time where disabled people are more visible than ever before. And yet while representation is exciting and important, it is not enough. I want and expect more. We all should expect more. We all deserve more. "
36 " We should not make disabled lives subject to debate "
37 " These stories do not seek to explain the meaning of disability or to inspire or elicit empathy. Rather, they show disabled people simply being in our own words, by our own accounts. Disability Visibility is also one part of a larger arc in my own story as a human being. "
38 " A brain injury is a particularly hard injury to have because it changes who you are in ways that other injuries don’t, since it affects how you think, act, and respond. It’s hard to talk about that loss and grief with people who have never experienced it. "
39 " Internalized ableism—the insidious belief that I would be a better person if I were not disabled—makes me feel like an imposter as a mother. Many of my friends with disabilities worry that they should not be parents; those who already are parents fear that their physical capacities negatively affect their children. It’s much easier to ignore my insecurities in professional or academic settings—to fake it until I make it, to go through the motions until I’m more confident in them. But how can I brazen my way through parenting? Talking myself out of my deepest fears is more difficult when I want, so primally, to be able to lift my son. "
40 " IHS is also grossly underfunded: in 2016, Congress allotted $4.8 billion for IHS, which came out to approximately $1,297 per person. "
