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

1 " The peculiar drama of my life has placed me in a world that by and large thinks it would be better if people like me did not exist. My fight has been for accommodation, the world to me and me to the world. "

― Alice Wong , Disability Visibility: First-Person Stories from the Twenty-first Century

2 " There is so much that able-bodied people could learn from the wisdom that often comes with disability. But space needs to be made. Hands need to reach out. People need to be lifted up.

The story of disabled success has never been a story about one solitary disabled person overcoming limitations—despite the fact that’s the narrative we so often read in the media. The narrative trajectory of a disabled person’s life is necessarily webbed. 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. "

― Alice Wong , Disability Visibility: First-Person Stories from the Twenty-first Century

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

― Alice Wong , Disability Visibility: First-Person Stories from the Twenty-first Century

4 " People ask me, “Have you tried yoga? Kombucha? This special water?” And I don’t have the energy to explain that yes, I’ve tried them. I’ve tried crystals and healing drum circles and prayer and everything. What I want to try is 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 will still take a cure if it’s presented to me, but I am so tired of trying to bargain with the universe for some kind of cure. The price is simply too high to live chasing cures, because in doing so, I’m missing living my life. I know only that in chasing to achieve the person I once was, I will miss the person I have become. "

― Alice Wong , Disability Visibility: First-Person Stories from the Twenty-first Century

5 " 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. In the discussion that follows, I argue that choice is illusory in a context of pervasive inequality. Choices are structured by oppression. We shouldn’t offer assistance with suicide until we all have the assistance we need to get out of bed in the morning and live a good life. Common causes of suicidality—dependence, institutional confinement, being a burden—are entirely curable. "

― Alice Wong , Disability Visibility: First-Person Stories from the Twenty-first Century

6 " Disabled people have always existed, whether the word disability is used or not. To me, disability is not a monolith, nor is it a clear-cut binary of disabled and nondisabled. Disability is mutable and ever-evolving. Disability is both apparent and nonapparent. Disability is pain, struggle, brilliance, abundance, and joy. Disability is sociopolitical, cultural, and biological. Being visible and claiming a disabled identity brings risks as much as it brings pride. "

― Alice Wong , Disability Visibility: First-Person Stories from the Twenty-first Century

7 " Esmé Weijun Wang writes in The Collected Schizophrenias about speaking to medical professionals about her experiences with schizophrenia. A doctor approached her to thank her afterward, but what she said shows how many able-bodied people don’t treat or see disabled people as human: She said that she was grateful for this reminder that her patients are human too. She starts out with such hope, she said, every time a new patient comes—and then they relapse and return, relapse and return. The clients, or patients, exhibit their illness in ways that prevent them from seeming like people who can dream, or like people who can have others dream for them. 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. "

― Alice Wong , Disability Visibility: First-Person Stories from the Twenty-first Century

8 " There is a persistent belief amongst abled people that a cure is what disabled people should want. To abandon our disabled selves and bodies and assimilate into a perhaps unachievable abled skin. Pushback to this idea often comes in the form of the social model of disability, which states that we are disabled by society and lack of access rather than by our bodies. For many, the social model can be liberating: by locating the cause of our problems outside our bodies, we can begin to love ourselves again. Tackling systemic ableism may feel like tilting at windmills, but it is still easier to address than some kind of failing within ourselves. There is a criticism of the social model of disability, located in the idea that some disabled people may want a cure. Particularly with matters like chronic pain/chronic illness, a cure is seen as something that can itself be liberating: a way to simply be in one’s body without feeling pain, for example. There is a danger in the cure mentality, as it can be a slippery slope toward eugenics when it is applied by abled people. Many in the Deaf and autistic communities do not want a cure and feel that those who advocate for a cure are advocating that they not exist anymore. Sometimes it comes down to how we see our individual disabilities: Are they an intrinsic part of who we are? Or are they an identity that comes with a side of agony we would gladly give up? How do we feel when abled people start advocating for “cures”—which may come in the form of eliminating our people entirely—rather than when the desire for a cure comes from disabled advocates? "

― Alice Wong , Disability Visibility: First-Person Stories from the Twenty-first Century

9 " There is a cyborg hierarchy. They like us best with bionic arms and legs. They like us Deaf with hearing aids, though they prefer cochlear implants. It would be an affront to ask the Hearing to learn sign language. Instead they wish for us to lose our language, abandon our culture, and consider ourselves cured. They like exoskeletons, which none of us use. They don’t count as cyborgs those of us who wear pacemakers or go to dialysis. Nor do they count those of us kept alive by machines, those of us made ambulatory by wheelchairs, those of us on biologics or antidepressants. They want us shiny and metallic and in their image. "

― Alice Wong , Disability Visibility: First-Person Stories from the Twenty-first Century

10 " Any movement that seeks to end police violence has no choice but to work to undo the racism and ableism and audism which, together, make Black Disabled/Deaf people prime targets for police violence. For instance, Darnell T. Wicker, a Black deaf veteran, was killed by police officers in Louisville, Kentucky, on August 8, 2016 (note that the lowercase d indicates that Darnell Wicker was deaf, not culturally Deaf). Body camera footage shows officers shooting Darnell Wicker multiple times within one to two seconds of issuing verbal orders on a dark night. However, Darnell Wicker relied on speech-reading to communicate. "

― Alice Wong , Disability Visibility: First-Person Stories from the Twenty-first Century

11 " The Chinese language shaped the perceptions of disability that my immigrant parents carried with them to their new homes. It wasn’t until the 1990s, for instance, that the Chinese characters used to refer to people with disabilities changed from canfei (useless) to canji (sickness or illness); the push to understand disability as a social construct has been under way for less than a decade. Media professionals in China are now encouraged by the Chinese disability advocacy organization One Plus One to use the characters cán zhàng (disabled and obstructed) when reporting on disability issues. But such language remains a suggestion rather than an expectation, and its impact has yet to filter out to the public. "

― Alice Wong , Disability Visibility: First-Person Stories from the Twenty-first Century

12 " In 2016, a Japanese man who was outspoken in his belief that all people with disabilities should be euthanized massacred nineteen disabled people and injured twenty-six at an institution in Sagamihara, Japan. Four years later, the victims still haven’t been publicly named—reportedly out of respect for their families, who wished to avoid the stigma that comes with having disabled family members. "

― Alice Wong , Disability Visibility: First-Person Stories from the Twenty-first Century

13 " The only healthcare available to Native people living on reservations is provided by the Indian Health Service (IHS), an operating division within the U.S. Department of Health and Human Services that’s consistently rated as the worst healthcare provider in America. IHS is also grossly underfunded: in 2016, Congress allotted $4.8 billion for IHS, which came out to approximately $1,297 per person. For comparison, each inmate in the federal prison system receives an average of about $6,973 in healthcare each year. "

― Alice Wong , Disability Visibility: First-Person Stories from the Twenty-first Century

14 " God didn’t put me on this street to provide disability awareness training to the likes of them. In fact, no god put anyone anywhere for any reason, if you want to know. "

― Alice Wong , Disability Visibility: First-Person Stories from the Twenty-first Century

15 " What has him so convinced it would be best to allow parents to kill babies with severe disabilities, and not other kinds of babies, if no infant is a “person” with a right to life? I learn it is partly that both biological and adoptive parents prefer healthy babies. But I have trouble with basing life-and-death decisions on market considerations when the market is structured by prejudice. "

― Alice Wong , Disability Visibility: First-Person Stories from the Twenty-first Century

16 " I’m told by the technicians to maintain an average amount of walking on a daily basis. Don’t go overboard, but don’t be lazy, either. Stay in the middle. The insurance company could pull my data and decide whether I have used my leg enough to justify the next one. "

― Alice Wong , Disability Visibility: First-Person Stories from the Twenty-first Century

17 " There is a persistent belief amongst abled people that a cure is what disabled people should want. To abandon our disabled selves and bodies and assimilate into a perhaps unachievable abled skin. "

― Alice Wong , Disability Visibility: First-Person Stories from the Twenty-first Century

18 " 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. "

― Alice Wong , Disability Visibility: First-Person Stories from the Twenty-first Century

19 " In high school, I confided in a nurse that I was trying to be sexually active, but bladder and bowel incontinence were affecting my ability to be intimate with my then-partner. Their only solution was to suggest that there would be people who would be “into that.” My dating pool was instantly reduced to people who would fetishize me. "

― Alice Wong , Disability Visibility: First-Person Stories from the Twenty-first Century

20 " 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