Disability Visibility Quotes

Sure, society understands visible shackles-- they get the symbolism of the wheelchair, of prosthetics, of a bumper sticker reading disabled veteran, but they still struggle for comprehension of the profound, invisible shackles that an illness such as [Chronic Fatigue] puts on a person's body.

We are all broken by something. We have all hurt someone and have been hurt. We all share the condition of brokenness even if our brokenness is not equivalent. I desperately wanted mercy for Jimmy Dill and would have done anything to create justice for him, but I couldn’t pretend that his struggle was disconnected from my own. The ways in which I have been hurt—and have hurt others—are different from the ways Jimmy Dill suffered and caused suffering. But our shared brokenness connected us. Paul Farmer, the renowned physician who has spent his life trying to cure the world’s sickest and poorest people, once quoted me something that the writer Thomas Merton said: We are bodies of broken bones. I guess I’d always known but never fully considered that being broken is what makes us human. We all have our reasons. Sometimes we’re fractured by the choices we make; sometimes we’re shattered by things we would never have chosen. But our brokenness is also the source of our common humanity, the basis for our shared search for comfort, meaning, and healing. Our shared vulnerability and imperfection nurtures and sustains our capacity for compassion. We have a choice. We can embrace our humanness, which means embracing our broken natures and the compassion that remains our best hope for healing. Or we can deny our brokenness, forswear compassion, and, as a result, deny our own humanity. I thought of the guards strapping Jimmy Dill to the gurney that very hour. I thought of the people who would cheer his death and see it as some kind of victory. I realized they were broken people, too, even if they would never admit it. So many of us have become afraid and angry. We’ve become so fearful and vengeful that we’ve thrown away children, discarded the disabled, and sanctioned the imprisonment of the sick and the weak—not because they are a threat to public safety or beyond rehabilitation but because we think it makes us seem tough, less broken. I thought of the victims of violent crime and the survivors of murdered loved ones, and how we’ve pressured them to recycle their pain and anguish and give it back to the offenders we prosecute. I thought of the many ways we’ve legalized vengeful and cruel punishments, how we’ve allowed our victimization to justify the victimization of others. We’ve submitted to the harsh instinct to crush those among us whose brokenness is most visible. But simply punishing the broken—walking away from them or hiding them from sight—only ensures that they remain broken and we do, too. There is no wholeness outside of our reciprocal humanity.

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.

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.

Children need to see themselves in books. They need to see their gender. They need to see their color, hair texture, their disability, themselves. Picture books are like many children’s first introduction to the world. Seeing yourself is almost like a message. It’s saying, you matter, you are visible, and you’re valuable

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.

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.

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.

We should not make disabled lives subject to debate

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.

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.

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

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.

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.

Advocacy is not just a task for charismatic individuals or high-profile community organizers. Advocacy is for all of us; advocacy is a way of life. It is a natural response to the injustices and inequality in the world.

There are hundreds of ways we accommodate physical disabilities--or at least understand them. We get angry when people fail to recognize the need for thoughtful and compassionate assistance when it comes to the physically disabled, but because mental disabilities aren't visible in the same way, we tend to be dismissive of the needs of the disabled and quick to judge their deficits and failures.

IHS is also grossly underfunded: in 2016, Congress allotted $4.8 billion for IHS, which came out to approximately $1,297 per person.

There are hundreds of ways we accommodate physical disabilities - or at least understand them. We get angry when people fail to recognize the need for thoughtful and compassionate assistance when it comes to the physically disabled, but because mental disabilities aren't visible in the same way, we tend to be dismissive of the needs of the disabled and quick to judge their deficits and failures.

We get angry when people fail to recognize the need for thoughtful and compassionate assistance when it comes to the physically disabled, but because mental disabilities aren’t visible in the same way, we tend to be dismissive of the needs of the disabled and quick to judge their deficits and failures.

Unless we recognise that each individual is irrepeatable and valuable by virtue of simply being conceived human, we cannot begin to talk about human rights. This includes the right to be born, as all of us have enjoyed. True justice should be for each human being, visible and invisible, young and old, disabled and able, to enjoy fully their right to life. The accidental attributes that we acquire such as colour, sex intelligence, economic circumstances, physical or mental disability should not be used as an excuse to deprive a person of life.

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.

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.

There are hundreds of ways we accommodate physical disabilities—or at least understand them. We get angry when people fail to recognize the need for thoughtful and compassionate assistance when it comes to the physically disabled, but because mental disabilities aren’t visible in the same way, we tend to be dismissive of the needs of the disabled and quick to judge their deficits and failures.

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.

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.

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.

Disability fluctuates, growing visible, then invisible, then visible again, becoming both ever-present and haunting. Such a problematizing of physical life added a new wrinkle to the genre's double/secret identity trope: the characters now interact with their shifting bodies as bodies with all the complications involved.

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.

I took a deep breath and—alongside the oxygen and the carbon dioxide—I exhaled tidbits of the intense shame and fear that I had carried as an extra weight on my backbone.

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.

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.

This year when I run my tongue around my mouth, know I am sharpening those new bones into teeth.

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.

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.

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.

Often, I think of disabled femme as my gift to the girl-child I was, who was never allowed to name herself or her beauty, the one who still stifles my tears if a word or sensation slits my memory.

Often, I think of disabled femme as my gift to the girl-child I was, who was never allowed to name herself or her beauty, the one who still stifles my tears if a word or sensation slits my memory.

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.

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.

My years of struggling against inequality, abusive power, poverty, oppression, and injustice had finally revealed something to me about myself. Being close to suffering, death, executions, and cruel punishments didn't just illuminate the brokenness of others; in a moment of anguish and heartbreak, it also exposed my own brokenness. You can't effectively fight abusive power, poverty, inequality, illness, oppression, or injustice and not be broken by it. We are all broken by something. We have all hurt someone and have been hurt. We all share the condition of brokenness even if our brokenness is not equivalent. The ways in which I have been hurt - and have hurt others - are different from the ways Jimmy Dill suffered and caused suffering. But our shared brokenness connected us. Thomas Merton said: We are bodies of broken bones. I guess I'd always known but never fully considered that being broken is what makes us human. We all have our reasons. Sometimes we're fractured by the choices we make; sometimes we're shattered by things we would never have chosen. But our brokenness is also the source of our common humanity, the basis for our shared search for comfort, meaning, and healing. Our shared vulnerability and imperfection nurtures and sustains our capacity for compassion. We have a choice. We can embrace our humanness, which means embracing our broken natures and the compassion that remains our best hope for healing. Or we can deny our brokenness, forswear compassion, and, as a result, deny our own humanity. I thought of the guards strapping Jimmy Dill to the gurney that very hour. I thought of the people who would cheer his death and see it as some kind of victory. I realized they were broken people, too, even if they would never admit it. So many of us have become afraid and angry. We've become so fearful and vengeful that we've thrown away children, discarded the disabled, and sanctioned the imprisonment of the sick and the weak - not because they are a threat to public safety or beyond rehabilitation but because we think it makes us seem tough, less broken. I thought of the victims of violent crime and the survivors of murdered loved ones, and how we've pressured them to recycle their pain and anguish and give it back to the offenders we prosecute. I thought of the many ways we've legalized vengeful and cruel punishments, how we've allowed our victimization to justify the victimization of others. We've submitted to the harsh instinct to crush those among us whose brokenness is most visible. But simply punishing the broken - walking away from them or hiding them from sight - only ensures that they remain broken and we do, too. There is no wholeness outside of our reciprocal humanity. I frequently had difficult conversations with clients who were struggling and despairing over their situations - over the things they'd done, or had been done to them, that had led them to painful moments. Whenever things got really bad, and they were questioning the value of their lives, I would remind them that each of us is more than the worst thing we've ever done. I told them that if someone tells a lie, that person is not just a liar. If you take something that doesn't belong to you, you are not just a thief. Even if you kill someone, you're not just a killer. I told myself that evening what I had been telling my clients for years. I am more than broken. In fact, there is a strength, a power even, in understanding brokenness, because embracing our brokenness creates a need and desire for mercy, and perhaps a corresponding need to show mercy. When you experience mercy, you learn things that are hard to learn otherwise. You see things that you can't otherwise see; you hear things you can't otherwise hear. You begin to recognize the humanity that resides in each of us.

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.

So many of us have become afraid and angry. We’ve become so fearful and vengeful that we’ve thrown away children, discarded the disabled, and sanctioned the imprisonment of the sick and the weak—not because they are a threat to public safety or beyond rehabilitation but because we think it makes us seem tough, less broken. I thought of the victims of violent crime and the survivors of murdered loved ones, and how we’ve pressured them to recycle their pain and anguish and give it back to the offenders we prosecute. I thought of the many ways we’ve legalized vengeful and cruel punishments, how we’ve allowed our victimization to justify the victimization of others. We’ve submitted to the harsh instinct to crush those among us whose brokenness is most visible. But simply punishing the broken--walking away from them or hiding them from sight--only ensures that they remain broken and we do, too. There is no wholeness outside of our reciprocal humanity.

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?

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.

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.

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.

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.

Most importantly, it's a message that assumes absolute and unrealistic able-bodiedness. No one with glasses. No crutches, no wheelchairs, no visible differences from girl to girl apart from the colour of their eyes and hair. Perfectly symmetrical faces abound. Some of the princesses – Mulan and Merida in particular – are athletes, with the kind of unrealistic body control and power that even able-bodied people often struggle to obtain. The message is that heroism isn't possible without physical 'perfection,' especially for girls.

widespread. Some states go so far as to forcibly sterilize people with certain disabilities. Some prohibit marriage for the genetically disabled, for fear of procreating hereditary conditions like mine. Visibly disabled people are actually barred from appearing in public in cities such as Columbus, Ohio—Dad’s hometown—until 1972, and Chicago until 1974, under what are collectively called the “ugly” laws because they target anyone perceived as unattractive, for being a disturbance of the peace. The movement to change all this and more is rising in discrete pockets all over, inspired by Black civil rights. Closer to

The idea that Autism is a “boy’s” disorder goes all the way back to when the condition was first described at the turn of the twentieth century. Hans Asperger and other early Autism researchers did study girls on the spectrum, but generally left them out of their published research reports.[55] Asperger in particular avoided writing about Autistic girls because he wanted to present certain intelligent, “high-functioning” Autistic people as “valuable” to the Nazis who had taken over Austria and were beginning to exterminate disabled people en masse. As Steve Silberman describes in his excellent book NeuroTribes, Hans Asperger wanted to spare the “high functioning” Autistic boys he’d encountered from being sent to Nazi death camps. Silberman described this fact somewhat sympathetically; Asperger was a scientist who had no choice but to collude with the fascist regime and save what few children he could. However, more recently unearthed documents make it clear that Asperger was far more complicit in Nazi exterminations of disabled children than had been previously believed.[56] Though Asperger held intelligent, “little professor” type Autistics close to his heart, he knowingly sent more visibly debilitated Autistics to extermination centers.

Wonder is where love begins, but the failure to wonder is the beginning of violence. Once people stop wondering about others, once they no longer see others as a part of them, they disable their instinct for empathy. And once they lose empathy, they can do anything to them, or allow anything to be done to them. Entire institutions built to preserve the interests of one group of people over another depend on this failure of imagination. Violence comes in the form of policies by the state and sometimes by bloodshed in the streets. More often, it comes in forms that are hard to see, unless we find a way to make them visible through our stories.

In 1996, when Senator Bob Dole runs against President Clinton, it’s a historic moment for people with disabilities. No one with a visible disability has run for the high office since Franklin Roosevelt—and unlike Roosevelt, Dole is forthcoming about his impairment (an arm injured in wartime). It sets a political conundrum for some in the movement: Dole may be one of us, and may have been an early supporter of the ADA, but aren’t Democrats better for disenfranchised minorities? That same year, a woman with Down syndrome becomes the first person with that diagnosis to receive a heart and lung transplant. She’d been turned down at first, but hospital administrators cave to activists. These and other

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.

The only disability you have is between your ears. We all have our disabilities; we all have our little insecurities--some are just more visible than others. How do you handle yours? Do you let them hold you back? I’ve learned that our brains play many tricks on us. Fear and doubt are only in your mind and have as much power as you give them. When Amy was lying in a hospital bed, being pumped full of fluids and fighting to stay alive, a doctor asked her what she believed in. “I believe in love,” she told him. “And I’ve got a lot more love to give.” It’s incredible to know someone who’s been on the brink of death and come out on the other side. Amy doesn’t want sympathy or pity or special treatment. Her legs are her legs--she doesn’t see them as a disability. It’s not about what you have or don’t have--it’s what you give and you share with others. The more you put into something, the more fulfillment you get back in return.

I look down, worried something is showing after all, but if it wasn't for the incongruous absence of sensation on my left side, I wouldn't know. I look back up at her, taking a step closer because I kind of want to take a step back, and you can’t let that show. "What?" She tenses, even though I’m not even remotely close enough to, say, hit her. "I... I thought you were white." I snort, too relieved to take offense. "I'm adopted. Not my biggest problem at the moment." She smiles at me, looking a little relieved herself. "It just... it seemed a bit too... British, I guess." And it's then that I notice the slight twinge of her accent. “I am British. I was born here.” Her own skin is a light chocolate brown, light enough that it’s perfectly visible when she blushes. She looks so adorable that I almost resist, but not quite. “You have anything against Britishness?” I ask, coming to lean against the doorway on my good side, relieving the weight I have to put on the leg. “No!” she assures me. “No, it’s…” Her hands flutter nervously in front of her, like she hopes to pluck the words out of the air. “I just worry. Some people are weird about it. About me. Especially with the tutoring.

THE BIGGER PICTURE   During World War II, thousands in factories across the United States constructed parachutes. From the worker’s point of view, the job was tedious. It required stitching endless lengths of colorless fabric, crouched over a sewing machine eight to ten hours a day. A day’s work produced a formless, massive heap of cloth with no visible resemblance to a parachute. In order to motivate workers and keep them concerned with quality, the management in one factory held a meeting. Management informed workers each day of the approximate number of parachutes that had been strapped to the back of pilots, copilots, and other “flying” personnel the previous day. They learned just how many men had jumped to safety from disabled planes as a result of their high-quality work. The managers encouraged their workers to see the big picture on their job. As a second means of motivation, the workers were asked to form a mental picture of a husband, brother, or son who might be the one saved by the parachute they sewed. That factory held one of the highest levels of quality on record!3 Don’t let the tedium of each day’s chores and responsibilities wear you down so you only see the “stitching” in front of you. Keep your eyes on the big picture. Focus on why you do what you do and who will benefit from your work, including those you don’t know and may never meet. You may not have all the answers to the question, “Why am I here?” but you can rest assured, the Lord does! Ultimately, the Bible tells us we will be in heaven for eternity—and that is the biggest picture of all! God is preparing us for heaven, just as He is preparing heaven for us. He is creating us to be the people He wants to live with forever. Whatever mundane tasks or trivial pursuits you undertake today, see them in the light of eternity. They will take on a whole new meaning!   “I GO TO PREPARE A PLACE FOR YOU. AND IF I GO AND PREPARE A PLACE FOR YOU, I WILL COME AGAIN AND RECEIVE YOU TO MYSELF; THAT WHERE I AM, THERE YOU MAY BE ALSO.” JOHN 14:2-3 NKJV

We still cling as a culture to the myth of the single writer succeeding on their own as fiercely as we cling to the myth of the self-made billionaire. But that isn’t what a disabled poetics and practice has to be.

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.

When I use this example with my students, sometimes a student will say that the mother is just teaching her child to be polite. In other words, naming this man’s race would be impolite. But why? What is shameful about being black—so shameful that we should pretend that we don’t notice?31 The mother’s reaction would probably be the same if the man had a visible disability of some kind or was obese. But if the child had seen a white person and shouted out, “Mommy, that man’s skin is white!” it is unlikely that the mother would feel the same anxiety, tension, and embarrassment that would have accompanied the first statement. Now imagine that the child had shouted out how handsome the man was, or how strong. These statements would probably be met with chuckles and smiles. The child would not likely be shushed, because we consider these statements compliments. The example of a child publicly calling out a black man’s race and embarrassing the mother illustrates several aspects of white children’s racial socialization. First, children learn that it is taboo to openly talk about race. Second, they learn that people should pretend not to notice undesirable aspects that define some people as less valuable than others (a large birthmark on someone’s face, a person using a wheelchair). These lessons manifest themselves later in life, when white adults drop their voices before naming the race of someone who isn’t white (and especially so if the race being named is black), as if blackness were shameful or the word itself were impolite. If we add all the comments we make about people of color privately, when we are less careful, we may begin to recognize how white children are taught to navigate race.

When white people are asked what the mother might be feeling, most agree that she is likely to feel anxiety, tension, and embarrassment. Indeed, many of us have had similar experiences wherein the message was clear: we should not talk openly about race. When I use this example with my students, sometimes a student will say that the mother is just teaching her child to be polite. In other words, naming this man’s race would be impolite. But why? What is shameful about being black—so shameful that we should pretend that we don’t notice?31 The mother’s reaction would probably be the same if the man had a visible disability of some kind or was obese. But if the child had seen a white person and shouted out, “Mommy, that man’s skin is white!” it is unlikely that the mother would feel the same anxiety, tension, and embarrassment that would have accompanied the first statement. Now

A prediction about safety is not, of course, merely statistical or demographic. If it were, a woman crossing a park alone one late afternoon could calculate risk like this: there are 200 people in the park; 100 are children, so they cause no concern. Of the remaining 100, all but 20 are part of couples; 5 of those 20 are women, meaning concern would appropriately attach to about 15 people she might encounter (men alone). But rather than acting just on these demographics, the woman’s intuition will focus on the behavior of the 15 (and on the context of that behavior). Any man alone may get her attention for an instant, but among those, only the ones doing certain things will be moved closer to the center of the predictive circle. Men who look at her, show special interest in her, follow her, appear furtive, or approach her will be far closer to the center than those who walk by without apparent interest, or those playing with a dog, or those on a bicycle, or those asleep on the grass. Speaking of crossing a park alone, I often see women violating some of nature’s basic safety rules. The woman who jogs along enjoying music through Walkman headphones has disabled the survival sense most likely to warn her about dangerous approaches: her hearing. To make matters worse, those wires leading up to her ears display her vulnerability for everyone to see. Another example is that while women wouldn’t walk around blind-folded, of course, many do not use the full resources of their vision; they are reluctant to look squarely at strangers who concern them. Believing she is being followed, a woman might take just a tentative look, hoping to see if someone is visible in her peripheral vision. It is better to turn completely, take in everything, and look squarely at someone who concerns you. This not only gives you information, but it communicates to him that you are not a tentative, frightened victim-in-waiting. You are an animal of nature, fully endowed with hearing, sight, intellect, and dangerous defenses. You are not easy prey, so don’t act like you are.

Yet a hell of a lot of femmes have spoken to me privately of the depression, anxiety, and PTSD that have come from being femmes in visible leadership. If the only place we and our gender are loved is on a pedestal, and one mistake throws us off the pedestal into a pit of hell … well, that’s not a recipe for anything like love, or liberation.

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.

Independence is a fairytale 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.

He understood that each individual group’s liberation was inextricably linked to the other—that justice and liberation could only be had if we all stand together and fight for the rights and liberties of the next individual or community. - Talila A. Lewis "For Ki'tay D. Davidson, Who LovesUs

Now I understand the exchange of silence for the comfort of others as oppression;

To illustrate an early lesson in white racial framing, imagine that a white mother and her white child are in the grocery store. The child sees a black man and shouts out, “Mommy, that man’s skin is black!” Several people, including the black man, turn to look. How do you imagine the mother would respond? Most people would immediately put their finger to their mouth and say, “Shush!” When white people are asked what the mother might be feeling, most agree that she is likely to feel anxiety, tension, and embarrassment. Indeed, many of us have had similar experiences wherein the message was clear: we should not talk openly about race. When I use this example with my students, sometimes a student will say that the mother is just teaching her child to be polite. In other words, naming this man’s race would be impolite. But why? What is shameful about being black—so shameful that we should pretend that we don’t notice?31 The mother’s reaction would probably be the same if the man had a visible disability of some kind or was obese. But if the child had seen a white person and shouted out, “Mommy, that man’s skin is white!” it is unlikely that the mother would feel the same anxiety, tension, and embarrassment that would have accompanied the first statement. Now imagine that the child had shouted out how handsome the man was, or how strong. These statements would probably be met with chuckles and smiles. The child would not likely be shushed, because we consider these statements compliments.

Man surprises me most about humanity. Because he sacrifices his health in order to make money. Then he sacrifices money to recuperate his health. And then he is so anxious about the future that he does not enjoy the present; the result being that he does not live in the present or the future; he lives as if he is never going to die, and then dies having never really lived.

He insists he doesn’t want to kill me. He simply thinks it would have been better, all things considered, to have given my parents the option of killing the baby I once was and to let other parents kill similar babies as they come along and thereby avoid the suffering that comes with lives like mine and satisfy the reasonable preferences of parents for a different kind of child. It has nothing to do with me. I should not feel threatened.

As an atheist, I think all preferences are moot once you kill someone. The injury is entirely to the surviving community.

He insists he doesn’t want to kill me. He simply thinks it would have been better, all things considered, to have given my parents the option of killing the baby I once was and to let other parents kill similar babies as they come along and thereby avoid the suffering that comes with lives like mine and satisfy the reasonable preferences of parents for a different kind of child. It has nothing to do with me. I should not feel threatened.

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. But they don’t want to know. They think they know everything there is to know, just by looking at me.

We take constraints that no one would choose and build rich and satisfying lives within them.

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 be reached out. People need to be lifted up.

Disability is both apparent and nonapparent. Disability is pain, struggle, brilliance, abundance, and joy. Disability is sociopo- litical, cultural, and biological. Being visible and claiming a disabled identity brings risks as much as it brings pride. 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. -Harriet McBryde Johnson Taking up space as a disabled person is always revolutionary. -Sandy Ho There is so much that able-bodied people could learn from the wisdom that often comes with dis- ability. But space needs to be made. Hands need to be reached out. People need to be lifted up. -A. H. Reaume Disability justice exists every place two disabled people meet-at a kitchen table, on heating pads in bed talking to our loves. -Leah Lakshmi Piepzna-Samarasinha

[A] political/relational framework recognizes the difficulty in determining who is included in the term “disabled,” refusing any assumption that it refers to a discrete group of particular people with certain similar essential qualities. On the contrary, the political/relational model of disability sees disability as a site of questions rather than firm definitions: Can it encompass all kinds of impairments—cognitive, psychiatric, sensory, and physical? Do people with chronic illnesses fit under the rubric of disability? Is someone who had cancer years ago but is now in remission disabled? What about people with some forms of multiple sclerosis (MS) who experience different temporary impairments—from vision loss to mobility difficulties—during each recurrence of the disease, but are without functional limitations once the MS moves back into remission? What about people with large birthmarks or other visible differences that have no bearing on their physical capabilities, but that often prompt discriminatory treatment?

People who have lived in shame and isolation need all the pride we can muster, not to mire ourselves in a narrowly defined identity politics, but to sustain broad-based rebellion. And likewise, we need a witness to all our histories, both collective and personal. Yet we also need to remember that witness and pride are not the same. Witness pairs grief and rage with remembrance. Pride pairs joy with a determination to be visible. Witness demands primary adherence to and respect for history. Pride uses history as one of its many tools. Sometimes witness and pride work in concert, other times not. We cannot afford to confuse, merge, blur the two.

The M1A3 Abrams was a man-killer. Colonel J. “Lonesome” Jones thanked the good Lord that he had never had to face anything like it. The models that preceded it, the A1 and A2, were primarily designed to engage huge fleets of Soviet tanks on the plains of Europe. They were magnificent tank busters, but proved to be less adept at the sort of close urban combat that was the bread and butter of the U.S. Army in the first two decades of the twenty-first century. In the alleyways of Damascus and Algiers, along the ancient cobbled lanes of Samara, Al Hudaydah, and Aden, the armored behemoths often found themselves penned in, unable to maneuver or even to see what they were supposed to kill. They fell victim to car bombs and Molotovs and homemade mines. Jones had won his Medal of Honor rescuing the crew of one that had been disabled by a jihadi suicide squad in the Syrian capital. The A3 was developed in response to attacks just like that one, which had become increasingly more succesful. It was still capable of killing a Chinese battle tank, but it was fitted out with a very different enemy in mind. Anyone, like Jones, who was familiar with the clean, classic lines of the earlier Abrams would have found the A3 less aesthetically pleasing. The low-profile turret now bristled with 40 mm grenade launchers, an M134 7.62 mm minigun, and either a small secondary turret for twin 50s, or a single Tenix-ADI 30 mm chain gun. The 120 mm canon remained, but it was now rifled like the British Challenger’s gun. But anyone, like Jones, who’d ever had to fight in a high-intensity urban scenario couldn’t give a shit about the A3’s aesthetics. They just said their prayers in thanks to the designers. The tanks typically loaded out with a heavy emphasis on high-impact, soft-kill ammunition such as the canistered “beehive” rounds, Improved Conventional Bomblets, White Phos’, thermobaric, and flame-gel capsules. Reduced propellant charges meant that they could be fired near friendly troops without danger of having a gun blast disable or even kill them. An augmented long-range laser-guided kinetic spike could engage hard targets out to six thousand meters. The A3 boasted dozens of tweaks, many of them suggested by crew members who had gained their knowledge the hard way. So the tank commander now enjoyed an independent thermal and LLAMPS viewer. Three-hundred-sixty-degree visibility came via a network of hardened battle-cams. A secondary fuel cell generator allowed the tank to idle without guzzling JP-8 jet fuel. Wafered armor incorporated monobonded carbon sheathing and reactive matrix skirts, as well as the traditional mix of depleted uranium and Chobam ceramics. Unlike the tank crew that Jones had rescued from a screaming mob in a Damascus marketplace, the men and women inside the A3 could fight off hordes of foot soldiers armed with RPGs, satchel charges, and rusty knives—for the “finishing work” when the tank had been stopped and cracked open to give access to its occupants.

We've become so fearful and vengeful that we've thrown away children, discarded the disabled, and sanctioned the imprisonment of the sick and the weak-- not because they are a threat to public safety or beyond rehabilitation but because we think it makes us seem tough, less broken. I thought of the victims of violent crime and the survivors of murdered loved ones, and how we've pressured them to recycle their pain and anguish and give it back to the offenders we prosecute. I thought of the many ways we've legalized vengeful and cruel punishments, how we've allowed our victimization to justify the victimization of others. We've submitted to the harsh instinct to crush those among us whose brokenness is most visible.

Art isn’t necessarily about beauty. Art is supposed to make you feel something. And I began to realize that my appearance is my art. My body, my face, my scars told a story. My story. - Ariel Henly

It’s one thing to battle oppression from the outside, but what do you do when the ideas that are attacking you are your own? As with all forms of oppression, sizeism doesn't exist in a vacuum. It interacts with and impacts other forms of oppression, including ableism. For those of us with disabilities where extra weight can make moving around that much harder, the threat of losing what mobility we have can loom over our heads. Ableism tells us that we must walk and become as “independent” as possible; sizeism blackmails us into making sure we stay that way. They both reinforce the man-made idea of an ideal body, one that everyone should aspire to have. Both feed into the capitalist idea that we must pull ourselves up by our own bootstraps, that we must fend for ourselves, that we must not be a burden on anyone else. The two work in tandem with sexism as well – a female body should be Barbie doll skinny, sleek and sophisticated, and anything else is just gross. Our culture's standard definition of beautiful depends on preconceived notions about how the perfect body should be, notions that rely on various forms of oppression to legitimize them. A model body should ideally be white or white-passing, slim and nondisabled. Is it any wonder we don’t see fat, visibly disabled people of color posing on the covers of fashion magazines?" -Cara Liebowitz, "Palsy Skinny: A Mixed Up, Muddled Journey into Size and Disability," Criptiques, 2014.

I have chronic pain, and I would gladly wish it gone, cured, away. Yet I also cannot spend all my time pursuing cures, because I would never have a life.