Disabled Parent Quotes

Other people look at me and think: That poor woman; she has a child with a disability. But all I see when I look at you is that girl who had memorized all the words to Queen's 'Bohemian Rhapsody' by the time she was three, the girl who crawls into bed with me whenever there's a thunderstorm - not because you're afraid but because I am, the girl whose laugh has always vibrated inside my own body like a tuning fork. I would never have wished for an able-bodied child, because that child would have been someone who wasn't you.

Is there anything as incredible as the love story of your own parents? Anything as hard to grasp as the fact that those two over-the-hill players, permanently on the disabled list, were once in the starting lineup? It's impossible to imagine my father, who in my experience was aroused mainly by the lowering of interest rates, suffering the acute, adolescent passions of the flesh.

I Have a Dream... someday my son, Zyon and ALL individuals with disabilities will be seen as HUMAN beings. I Have a Dream... someday the human & civil rights of individuals with disabilities are honored and they are treated as equals. I Have a Dream... someday ALL parents who have children with disabilities see their child as a blessing and not a burden. I Have a Dream... someday there will be more jobs and opportunities for individuals with disabilities. I Have a Dream... someday there will be UNITY "within" the disabled community. I HAVE A DREAM!!!

INTROVERTS are especially vulnerable to challenges like marital tension, a parent’s death, or abuse. They’re more likely than their peers to react to these events with depression, anxiety, and shyness. Indeed, about a quarter of Kagan’s high-reactive kids suffer from some degree of the condition known as “social anxiety disorder,” a chronic and disabling form of shyness.

Can you stand on your legs?” Sydelle Pulaski asked. “Can you walk at all?” People never asked Chris those questions; they whispered them to his parents behind his back. “N-n-no. Why?” “What better disguise for a thief or a murderer than a wheelchair, the perfect alibi.” Chris enjoyed being taken for the criminal type. Now they really were friends.

I've met so many parents of the kids who are on the low end of the autism spectrum, kids who are diametrically opposed to Jacob, with his Asperger's. They tell me I'm lucky to have a son who's verbal, who is blisteringly intelligent, who can take apart the broken microwave and have it working again an hour later. They think there is no greater hell than having a son who is locked in his own world, unaware that there's a wider one to explore. But try having a son who is locked in his own world and still wants to make a connection. A son who tries to be like everyone else but truly doesn't know how.

If the only time a child looks as if he has bipolar disorder is when he’s frustrated, that’s not bipolar disorder; that’s a learning disability in the domains of flexibility and frustration tolerance.

Life-transforming ideas have always come to me through books.” - Bell Hooks

Somewhere, someone is figuring out how to push back the hood of grief, but Marie-Laure cannot. Not yet. The truth is that she is a disabled girl with no home and no parents.

We are not “differently abled”—we are disabled, robbed of empowerment and agency in a world that is not built for us. “Differently abled,” “handi-capable,” and similar euphemisms were created in the 1980s by the abled parents of disabled children, who wished to minimize their children’s marginalized status. These terms were popularized further by politicians[76] who similarly felt uncomfortable acknowledging disabled people’s actual experiences of oppression.

Labeling a child’s mind as diseased—whether with autism, intellectual disabilities, or transgenderism—may reflect the discomfort that mind gives parents more than any discomfort it causes their child. Much gets corrected that might better have been left alone.

Glen had a disability more disfiguring than a burn and more terrifying than cancer. Glen had been born on the day after Christmas. "My parents just combine my birthday with Christmas, that's all," he explained. But we knew this was a lie. Glen's parents just wrapped a couple of his Christmas presents in birthday-themed wrapping paper, stuck some candles in a supermarket cake, and had a dinner of Christmas leftovers.

If you're responsible enough to become a parent, then you should be responsible enough to accept your kid no matter how they turn out. It doesn't matter if they're disabled or gay or not as smart as others or green or black or blue or whatever the hell they turn out to be. You have them, you love them. Always. Being a parent isn't about getting to pick and choose what you want you kid to be. Being a parent means protecting your kid from anything that could ever harm him. Being a parent means you shelter, but you also make them stronger so one day they can stand on their own.

If we can't start by seeing an autistic child as inherently capable, interesting, and valuable, no amount of education or therapy we layer on top is going to matter.

There is something ironic in prejudice against the disabled and their families, because their plight might befall anybody. Straight men are unlikely to wake up gay one morning, and white children don't become black; but any of us could be disabled in an instant. People with disabilities make up the largest minority in America; they constitute 15 percent of the population, though only 15 percent of those were born with their disability and about a third are over sixty-five. Worldwide, some 550 million people are disabled. The disability-rights scholar Tobin Siebers has written, "The cycle of life runs in actuality from disability to temporary ability back to disablity, and that only if you are among the most fortunate.

The more love and support your child receives, the richer his or her life becomes, and nurses can certainly add to the circle of love surrounding your child.

In these days, doctors know little about autism. They blame it on distant parents who don't communicate enough with their children

It is a lonely existence to be a child with a disability which no-one can see or understand, you exasperate your teachers, you disappoint your parents, and worst of all you know that you are not just stupid.

In retrospect, it seems obvious that my research about parenting was also a means to subdue my anxieties about becoming a parent.... I grew up afraid of illness and disability, inclined to avert my gaze from anyone who was too different – despite all the ways I knew myself to be different. This book helped me kill that bigoted impulse, which I had always known to be ugly. The obvious melancholy in the stories I heard should, perhaps, have made me shy away from paternity, but it had the opposite effect.

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.

Is there anything as incredible as the love story of your own parents? Anything as hard to grasp as the fact that those two over-the-hill players, permanently on the disabled list, were once in the starting lineup?

Even though our journey as parents of a medically fragile child began with emotional turmoil, it has since become a purposeful odyssey that brings meaning and depth to our lives. This is the road we were born to travel.

Parents of medically fragile children find themselves becoming experts in lots of different areas, including laws and regulations, research and treatments, and the various specialists that support the health of their children.

Hypercritical, Shaming Parents Hypercritical and shaming parents send the same message to their children as perfectionistic parents do - that they are never good enough. Parents often deliberately shame their children into minding them without realizing the disruptive impact shame can have on a child's sense of self. Statements such as "You should be ashamed of yourself" or "Shame on you" are obvious examples. Yet these types of overtly shaming statements are actually easier for the child to defend against than are more subtle forms of shaming, such as contempt, humiliation, and public shaming. There are many ways that parents shame their children. These include belittling, blaming, contempt, humiliation, and disabling expectations. -BELITTLING. Comments such as "You're too old to want to be held" or "You're just a cry-baby" are horribly humiliating to a child. When a parent makes a negative comparison between his or her child and another, such as "Why can't you act like Jenny? See how she sits quietly while her mother is talking," it is not only humiliating but teaches a child to always compare himself or herself with peers and find himself or herself deficient by comparison. -BLAMING. When a child makes a mistake, such as breaking a vase while rough-housing, he or she needs to take responsibility. But many parents go way beyond teaching a lesson by blaming and berating the child: "You stupid idiot! Do you think money grows on trees? I don't have money to buy new vases!" The only thing this accomplishes is shaming the child to such an extent that he or she cannot find a way to walk away from the situation with his or her head held high. -CONTEMPT. Expressions of disgust or contempt communicate absolute rejection. The look of contempt (often a sneer or a raised upper lip), especially from someone who is significant to a child, can make him or her feel disgusting or offensive. When I was a child, my mother had an extremely negative attitude toward me. Much of the time she either looked at me with the kind of expectant expression that said, "What are you up to now?" or with a look of disapproval or disgust over what I had already done. These looks were extremely shaming to me, causing me to feel that there was something terribly wrong with me. -HUMILIATION. There are many ways a parent can humiliate a child, such as making him or her wear clothes that have become dirty. But as Gershen Kaufman stated in his book Shame: The Power of Caring, "There is no more humiliating experience than to have another person who is clearly the stronger and more powerful take advantage of that power and give us a beating." I can personally attest to this. In addition to shaming me with her contemptuous looks, my mother often punished me by hitting me with the branch of a tree, and she often did this outside, in front of the neighbors. The humiliation I felt was like a deep wound to my soul. -DISABLING EXPECTATIONS. Parents who have an inordinate need to have their child excel at a particular activity or skill are likely to behave in ways that pressure the child to do more and more. According to Kaufman, when a child becomes aware of the real possibility of failing to meet parental expectations, he or she often experiences a binding self-consciousness. This self-consciousness - the painful watching of oneself - is very disabling. When something is expected of us in this way, attaining the goal is made harder, if not impossible. Yet another way that parents induce shame in their children is by communicating to them that they are a disappointment to them. Such messages as "I can't believe you could do such a thing" or "I am deeply disappointed in you" accompanied by a disapproving tone of voice and facial expression can crush a child's spirit.

Parents’ early responses to and interactions with a child determine how that child comes to view himself. These parents are also profoundly changed by their experiences. If you have a child with a disability, you are forever the parent of a disabled child; it is one of the primary facts about you, fundamental to the way other people perceive and decipher you. Such parents tend to view aberrance as illness until habituation and love enable them to cope with their odd new reality—often by introducing the language of identity. Intimacy with difference fosters its accommodation.

And I am proud, but mostly, I’m angry. I’m angry, because when I look around, I’m still alone. I’m still the only black woman in the room. And when I look at what I’ve fought so hard to accomplish next to those who will never know that struggle I wonder, “How many were left behind?” I think about my first-grade class and wonder how many black and brown kids weren’t identified as “talented” because their parents were too busy trying to pay bills to pester the school the way my mom did. Surely there were more than two, me and the brown boy who sat next to me in the hall each day. I think about my brother and wonder how many black boys were similarly labeled as “trouble” and were unable to claw out of the dark abyss that my brother had spent so many years in. I think about the boys and girls playing at recess who were dragged to the principal’s office because their dark skin made their play look like fight. I think about my friend who became disillusioned with a budding teaching career, when she worked at the alternative school and found that it was almost entirely populated with black and brown kids who had been sent away from the general school population for minor infractions. From there would only be expulsions or juvenile detention. I think about every black and brown person, every queer person, every disabled person, who could be in the room with me, but isn’t, and I’m not proud. I’m heartbroken. We should not have a society where the value of marginalized people is determined by how well they can scale often impossible obstacles that others will never know. I have been exceptional, and I shouldn’t have to be exceptional to be just barely getting by. But we live in a society where if you are a person of color, a disabled person, a single mother, or an LGBT person you have to be exceptional. And if you are exceptional by the standards put forth by white supremacist patriarchy, and you are lucky, you will most likely just barely get by. There’s nothing inspirational about that.

An exhausted parent can’t provide the best care, although occasionally, we have all had to do so.

The two bond over their mutual lack of family ties: Saul from his disownment, Miriam from the car accident that orphaned her as a college junior. Both want children. Miriam has inherited her parents' idea of procreative legitimacy, wants to compensate for her only-child-dom. She sees in Saul the househusband who will enable her parental ambitions without disabling her autonomy. In Miriam, Saul sees the means to a book-lined study and a lifestyle conducive to mystical advancement. They are both absolutely certain these things equal love.

While our life remains more chaotic than not, we continue to land on our blistered feet, drag each other out of the quicksand, beg for forgiveness as we wander out of the doghouse, and dig for the humor beneath our grief. So our family, four-pawed members included, continues to bound forward celebrating our canine connection and sharing hope with all who need healing.

This is also true of disability. Being autistic is not the norm, but it isn’t wrong. The lives that autistic people build for themselves may not be conventional, but they aren’t inferior.

I am not sure whether you could call this abuse, but when I was (long ago) abroad in the world of dry men, I saw parents, usually upscale and educated and talented and functional and white, patient and loving and supportive and concerned and involved in their children’s lives, profilgate with compliments and diplomatic with constructive criticism, loquacious in their pronouncements of unconditional love for and approval of their children, conforming to every last jot-tittle in any conceivably definition of a good parent, I saw parent after unimpeachable parent who raised kids who were (a) emotionally retarded or (b) lethally self-indulgent or (c) chronically depressed or (d) borderline psychotic or (e) consumed with narcissistic self-loathing or (f) neurotically driven/addicted or (g) variously psychosomatically Disabled or (h) some conjunctive permutation of (a) … (g). Why is this. Why do many parents who seem relentlessly bent on producing children who feel they are good persons deserving of love produce children who grow to feel they are hideous persons not deserving of love who just happen to have lucked into having parents so marvelous that the parents love them even though they are hideous? Is it a sign of abuse if a mother produces a child who believes not that he is innately beautiful and lovable and deserving of magnificent maternal treatment but somehow that he is a hideous unlovable child who has somehow lucked in to having a really magnificent mother? Probably not. But could such a mother then really be all that magnificent, if that’s the child’s view of himself? ...I think, Mrs. Starkly, that I am speaking of Mrs. Avril M.-T. Incandenza, although the woman is so multileveled and indictment-proof that it is difficult to feel comfortable with any sort of univocal accusation of anything. Something just was not right, is the only way to put it. Something creepy, even on the culturally stellar surface.

No one has ever suggested legal protections for ugly people to make up for the misaligned features that will compromise their personal and professional lives. For people disabled by inherent moral perplexity, we offer not support but imprisonment.

Parents of children with disabilities live in this constant elevated state of anxiety, sometimes even teetering between despair and dread. We know our children have this beaming innocence within them, but because of that they sometimes misinterpret human intention.

Disability scholars Andrienne Asch and Erik Parens, in their seminal discussion of the problem, wrote,'Pre-natal diagnosis reinforces the medical model that disability itself, not societal discrimination against people with disabilities, is the problem to be solved.

People often said to me what I couldn't do things when I was younger such as sports, writing, mathematics, geography, science etc - I pathway can always be tailored can change and that change itself is possible what did I excel in well art was one of those things of have gone BACK to to move FORWARD and have taken up poetry and creativity something that occupies my mind in way that creates happy thoughts, happy feelings, and happiness all round really. To invest in your strengths and understand but not over-define yourself by your deficits is something that has worked for me over the years and this year in particular (the ethos was always there instilled that I am human being first like anyone else by my parents and family but it has been tenderly and quite rightly reaffirmed by a friend also) it has made me a more balanced person whom has healthy acknowledgment of my autism who but also wants to be known as a person first - see me first, see that I have a personality first. I say this not in anger or bitterness but as a healthy optimistic realisation and as a message of hope for people out there.

I definitely think mothers of children with disabilities have to have extraordinary courage every day...Because we all know our children have value and worth and potential, but the everyday world sometimes doesn’t.' —Linda Strobel in Up: A Love Letter to the Down Syndrome Community

We believed we were supposed to "cope" as best we could. As we talked, we realized the disability itself was not that big a deal for us. We had all learned to accept our physical limitations. What made life difficult was not the disability, but the lack of services and support, the lack of accessibility, the unfair and stereotypical ways in which we were treated, the pity doled out for us all our lives. Often, after a meeting, I wrote my thoughts down in a notebook. "It's not my fault that I'm disabled, yet I've been made to feel that it is," I wrote. "My polio never made me unhappy; people made me unhappy. Ever since I was a little girl, people have always made me feel I was no good because I was disabled. From Sicilian women and the nuns to the doctors who couldn't fix me, to my fellow students and prospective employers... and even my own parents." As I wrote, my tears fell and stained the pages - tears of anger, of relief and of new hope.

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.

Like most of the English faculty, she had dealt with suicidal and homicidal students, students with eating disorders who fainted in class, students with depression, cancer, learning disabilities, dead or dying parents, autism, schizophrenia, gender identity issues, romantic heartbreak, and various syndromes involving the inability to sit quietly and read.

I didn't want my exhaustion to burn through my empathy. How terrifying was this loss of electric power superimposed on the powerlessness of aging and disability? I could not fathom it and tried not to be judgmental about my parents' reactions. How did it feel not seeing well to begin with and then functioning by flashlight? How did it feel to depend on others for your heat, water, and food?

A country is mostly the people in it,” Maud said. “I don’t love England. My parents died a long time ago, and my brother has disowned me. I love Germany. For me, Germany is my wonderful husband, Walter; my misguided son, Erik; my alarmingly capable daughter, Carla; our maid, Ada, and her disabled son; my friend Monika and her family; my journalistic colleagues . . . I’m staying, to fight the Nazis.

Let’s Convince Him He’s Addicted for Life Parents consent to their children’s treatment for diseases other than taking drugs. One of the most common groups of childhood diseases is “learning disabilities,” including especially hyperactivity. Are such learning disabilities permanent? One piece of research showed that, “Contrary to the expectations of many experts, . . . boys who are hyperactive do not always have

That's the beauty of discipline. It trumps everything. A lot of us are born with minimal talent, unhappy in our own skin and with the genetic makeup with which we were born. We have fucked-up parents, grow up bullied and abused, or are diagnosed with learning disabilities. We hate our hometown, our teachers, our families, and damn near everything about ourselves. We wish we could be born again as some other motherfucker in some other time and place. Well, I am proof that rebirth is possible through discipline, which is the only thing capable of altering your DNA. It is the skeleton key that can get you past all the gatekeepers and into each and every room you wish to enter. Even the ones built to keep you the fuck out! ... Discipline builds mental endurance because when effort is your main priority, you stop looking for everything to be enjoyable. Our phones and social media have turned too many of us inside out with envy and greed as we get inundated with other people's success, their new cars and houses, big contracts, resort vacations, and romantic getaways. We see how much fun everyone else is having and feel like the world is passing us by, so we bitch about it and then wonder why we are not where we want to be. When you become disciplined, you don't have time for that bullshit. p140

According to Jay Belsky, a leading proponent of this view and a psychology professor and child care expert at the University of London, the reactivity of these kids’ nervous systems makes them quickly overwhelmed by childhood adversity, but also able to benefit from a nurturing environment more than other children do. In other words, orchid children are more strongly affected by all experience, both positive and negative. Scientists have known for a while that high-reactive temperaments come with risk factors. These kids are especially vulnerable to challenges like marital tension, a parent’s death, or abuse. They’re more likely than their peers to react to these events with depression, anxiety, and shyness. Indeed, about a quarter of Kagan’s high-reactive kids suffer from some degree of the condition known as “social anxiety disorder,” a chronic and disabling form of shyness.

Michael Sandel uses this thought experiment: Suppose a parent comes to a doctor and says, “My child is going to be born deaf, but I want you to do something to make her able to hear.” The doctor should try, right? But now suppose a parent says, “My child is going to be born able to hear, but I want you to do something to her to make sure she is born deaf.” I think most of us would recoil if the doctor agreed. Our natural instinct is to consider deafness a disability.

You took a social problem--parents divorcing, mother a nymphomaniac, father drunk or gay (or both), brother on drugs, child crippled or bullied, a moron in the family, epilepsy, poverty (but only if you were stuck for a problem; poverty was too easy)--and you wrote about this Problem in stark, distressing terms. Then--this is the Rule--you gave it to the child with that problem to read. The child was supposed to delight in the insight and to see his own parents (or brother or disability) as a joyful challenge.

The passion for such children contains no ego motive of anticipated reciprocity; one is choosing against, in the poet Richard Wilbur's phrase, 'loving things for reasons'. You find beauty and hope in the existence, rather than the achievements, of such a child. Most parenthood entails some struggle to change, educate and improve one's children; people with multiple severe disabilities may not become anything else, and there is a compelling purity in parental engagement not with what might or should or will be, but with, simply, what is.

A brick could be used to show you how to live a richer, fuller, more satisfying life. Don’t you want to have fulfillment and meaning saturating your existence? I can show you how you can achieve this and so much more with just a simple brick. For just $99.99—not even an even hundred bucks, I’ll send you my exclusive life philosophy that’s built around a brick. Man’s used bricks to build houses for centuries. Now let one man, me, show you how a brick can be used to build your life up bigger and stronger than you ever imagined. But act now, because supplies are limited. This amazing offer won’t last forever. You don’t want to wake up in ten years to find yourself divorced, homeless, and missing your testicles because you waited even two hours too long to obtain this information. Become a hero today—save your life. Procrastination is only for the painful things in life. We prolong the boring, but why put off for tomorrow the exciting life you could be living today? If you’re not satisfied with the information I’m providing, I’m willing to offer you a no money back guarantee. That’s right, you read that wrong. If you are not 100% dissatisfied with my product, I’ll give you your money back. For $99.99 I’m offering 99.99%, but you’ve got to be willing to penny up that percentage to 100. Why delay? The life you really want is mine, and I’m willing to give it to you—for a price. That price is a one-time fee of $99.99, which of course everyone can afford—even if they can’t afford it. Homeless people can’t afford it, but they’re the people who need my product the most. Buy my product, or face the fact that in all probability you are going to end up homeless and sexless and unloved and filthy and stinky and probably even disabled, if not physically than certainly mentally. I don’t care if your testicles taste like peanut butter—if you don’t buy my product, even a dog won’t lick your balls you miserable cur. I curse you! God damn it, what are you, slow? Pay me my money so I can show you the path to true wealth. Don’t you want to be rich? Everything takes money—your marriage, your mortgage, and even prostitutes. I can show you the path to prostitution—and it starts by ignoring my pleas to help you. I’m not the bad guy here. I just want to help. You have some serious trust issues, my friend. I have the chance to earn your trust, and all it’s going to cost you is a measly $99.99. Would it help you to trust me if I told you that I trust you? Well, I do. Sure, I trust you. I trust you to make the smart decision for your life and order my product today. Don’t sleep on this decision, because you’ll only wake up in eight hours to find yourself living in a miserable future. And the future indeed looks bleak, my friend. War, famine, children forced to pimp out their parents just to feed the dog. Is this the kind of tomorrow you’d like to live in today? I can show you how to provide enough dog food to feed your grandpa for decades. In the future I’m offering you, your wife isn’t a whore that you sell for a knife swipe of peanut butter because you’re so hungry you actually considered eating your children. Become a hero—and save your kids’ lives. Your wife doesn’t want to spread her legs for strangers. Or maybe she does, and that was a bad example. Still, the principle stands. But you won’t be standing—in the future. Remember, you’ll be confined to a wheelchair. Mushrooms are for pizzas, not clouds, but without me, your life will atom bomb into oblivion. Nobody’s dropping a bomb while I’m around. The only thing I’m dropping is the price. Boom! I just lowered the price for you, just to show you that you are a valued customer. As a VIP, your new price on my product is just $99.96. That’s a savings of over two pennies (three, to be precise). And I’ll even throw in a jar of peanut butter for free. That’s a value of over $.99. But wait, there’s more! If you call within the next ten minutes, I’ll even throw in a blanket free of charge. . .

This was the church’s great achievement in Ireland. It had so successfully disabled a society’s capacity to think for itself about right and wrong that it was the parents of an abused child, not the bishop who enabled that abuse, who were ‘quite apologetic’. It had managed to create a flock who, in the face of an outrageous violation of trust, would be concerned as much about the abuser as about those he had abused and might abuse in the future. It had inserted its system of control and power so deeply into the minds of the faithful that they could scarcely even feel angry about the perpetration of disgusting crimes on their own children.

We cannot pick and choose whom among the oppressed it is convenient to support. We must stand with all the oppressed or none of the oppressed. This is a global fight for life against corporate tyranny. We will win only when we see the struggle of working people in Greece, Spain, and Egypt as our own struggle. This will mean a huge reordering of our world, one that turns away from the primacy of profit to full employment and unionized workplaces, inexpensive and modernized mass transit, especially in impoverished communities, universal single-payer health care and a banning of for-profit health care corporations. The minimum wage must be at least $15 an hour and a weekly income of $500 provided to the unemployed, the disabled, stay-at-home parents, the elderly, and those unable to work. Anti-union laws, like the Taft-Hartley Act, and trade agreements such as NAFTA, will be abolished. All Americans will be granted a pension in old age. A parent will receive two years of paid maternity leave, as well as shorter work weeks with no loss in pay and benefits. The Patriot Act and Section 1021 of the National Defense Authorization Act, which permits the military to be used to crush domestic unrest, as well as government spying on citizens, will end. Mass incarceration will be dismantled. Global warming will become a national and global emergency. We will divert our energy and resources to saving the planet through public investment in renewable energy and end our reliance on fossil fuels. Public utilities, including the railroads, energy companies, the arms industry, and banks, will be nationalized. Government funding for the arts, education, and public broadcasting will create places where creativity, self-expression, and voices of dissent can be heard and seen. We will terminate our nuclear weapons programs and build a nuclear-free world. We will demilitarize our police, meaning that police will no longer carry weapons when they patrol our streets but instead, as in Great Britain, rely on specialized armed units that have to be authorized case by case to use lethal force. There will be training and rehabilitation programs for the poor and those in our prisons, along with the abolition of the death penalty. We will grant full citizenship to undocumented workers. There will be a moratorium on foreclosures and bank repossessions. Education will be free from day care to university. All student debt will be forgiven. Mental health care, especially for those now caged in our prisons, will be available. Our empire will be dismantled. Our soldiers and marines will come home.

If movements got it together about ableism, there is so much we could win—movement spaces where elders, parents, and sick and disabled folks (a huge amount of the planet) could be present—strength in numbers! We could create movement spaces where people don’t “age out” of being able to be involved after turning forty or feel ashamed of admitting any disability, Crazyness, or chronic illness. We could create visions of revolutionary futures that don’t replicate eugenics—where disabled people exist and are thriving, not, as often happens in abled revolutionary imaginations, revolutionary futures where winning the rev means we don’t exist anymore because everyone has health care.

I think we're all just doing our best to survive the inevitable pain and suffering that walks alongside us through life. Long ago, it was wild animals and deadly poxes and harsh terrain. I learned about it playing The Oregon Trail on an old IBM in my computer class in the fourth grade. The nature of the trail has changed, but we keep trekking along. We trek through the death of a sibling, a child, a parent, a partner, a spouse; the failed marriage, the crippling debt, the necessary abortion, the paralyzing infertility, the permanent disability, the job you can't seem to land; the assault, the robbery, the break-in, the accident, the flood, the fire; the sickness, the anxiety, the depression, the loneliness, the betrayal, the disappointment, and the heartbreak. There are these moments in life where you change instantly. In one moment, you're the way you were, and in the next, you're someone else. Like becoming a parent: you're adding, of course, instead of subtracting, as it is when someone dies, and the tone of the occasion is obviously different, but the principal is the same. Birth is an inciting incident, a point of no return, that changes one's circumstances forever. The second that beautiful baby onto whom you have projected all your hopes and dreams comes out of your body, you will never again do anything for yourself. It changes you suddenly and entirely. Birth and death are the same in that way.

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.

In my own periods of darkness, in the underworld of the soul, I find myself frequently overcome and amazed by the ability of people to befriend each other, to love their intimate partners and parents and children, and to do what they must do to keep the machinery of the world running. I knew a man, injured and disabled by a car accident, who was employed by a local utility. For years after the crash he worked side by side with another man, who for his part suffered with a degenerative neurological disease. They cooperated while repairing the lines, each making up for the other’s inadequacy. This sort of everyday heroism is the rule, I believe, rather than the exception. Most individuals are dealing with one or more serious health problems while going productively and uncomplainingly about their business. If anyone is fortunate enough to be in a rare period of grace and health, personally, then he or she typically has at least one close family member in crisis. Yet people prevail and continue to do difficult and effortful tasks to hold themselves and their families and society together. To me this is miraculous—so much so that a dumbfounded gratitude is the only appropriate response. There are so many ways that things can fall apart, or fail to work altogether, and it is always wounded people who are holding it together. They deserve some genuine and heartfelt admiration for that. It’s an ongoing miracle of fortitude and perseverance

Eleanor, I said to myself, sometimes you’re too quick to judge people. There are all kinds of reasons why they might not look like the kind of person you’d want to sit next to on a bus, but you can’t sum someone up in a ten-second glance. That’s simply not enough time. The way you try not to sit next to fat people, for example. There’s nothing wrong with being overweight, is there? They could be eating because they’re sad, the same way you used to drink vodka. They could have had parents who never taught them how to cook or eat healthily. They could be disabled and unable to exercise, or else they could have an illness that contributes to weight gain despite their best efforts. You just don’t know, Eleanor, I said to myself.

Our parents’ generation associated disability with President Franklin Roosevelt, who actively hid from the public his paralysis from polio. He never allowed himself to be photographed in his wheelchair or being helped with his mobility. He talked about disability as something for an individual to beat or conquer. We disagreed with this—we did not see our issue as a medical problem that, if we just “fixed” it, would be fine. We were beginning to see our lack of access as a problem with society, rather than our individual problem. From our perspective, disability was something that could happen to anyone at any time, and frequently did, so it was right for society to design its infrastructure and systems around this fact of life.

Ḥayā’, in Arabic, conveys the meaning of “shame,” though the root word of ḥayā’ is closely associated with “life” and “living.” The Prophet stated, “Every religion has a quality that is characteristic of that religion, and the characteristic of my religion is ḥayā’,” an internal sense of shame that includes bashfulness and modesty. As children, many of us had someone say to us at times, “Shame on you!” Unfortunately, shame has now come to be viewed as a negative word, as if it were a pejorative. Parents are now often advised to never cause a child to feel shame. The current wisdom largely suggests that adults should always make the child feel good, regardless of his or her behavior. However, doing so eventually disables naturally occurring deterrents to misbehavior.

On a Sunday this January, probably of whatever year it is when you read this (at least as long as I’m living), I will probably be preaching somewhere in a church on “Sanctity of Human Life Sunday.” Here’s a confession: I hate it. Don’t get me wrong. I love to preach the Bible. And I love to talk about the image of God and the protection of all human life. I hate this Sunday not because of what we have to say, but that we have to say it at all. The idea of aborting an unborn child or abusing a born child or starving an elderly person or torturing an enemy combatant or screaming at an immigrant family, these ought all to be so self-evidently wrong that a “Sanctity of Human Life Sunday” ought to be as unnecessary as a “Reality of Gravity Sunday.” We shouldn’t have to say that parents shouldn’t abort their children, or their fathers shouldn’t abandon the mothers of their babies, or that no human life is worthless regardless of age, skin color, disability, or economic status. Part of my thinking here is, I hope, a sign of God’s grace, a groaning by the Spirit at this world of abortion clinics and torture chambers (Rom. 8:22–23). But part of it is my own inability to see the spiritual combat zone that the world is, and has been from Eden onward. This dark present reality didn’t begin with the antebellum South or with the modern warfare state, and it certainly didn’t begin with the Roe v. Wade Supreme Court decision. Human dignity is about the kingdom of God, and that means that in every place and every culture human dignity is contested.

How did I ever learn that people like my daughter were less-than? Had the roots of my thinking been planted by the defect language, by the bad seed and at zero language? Had they begun in the hallways of that elementary school I attended? Not quite. The roots of my thinking were older than me. They were older than the neglected buildings that housed people with intellectual disabilities, older than the American laws requiring their sterilization. The roots dug deep into history’s soil, reaching even past the story of Jesus’s disciples, who found a blind man on the side of a road and asked their master, “Who sinned to make this man blind? The man or his parents?” Disability as punishment . Disability as sin. Disability as problem, as outcast, as other. These equations have been graffitied all over human history.

MY PARENTS WEREN‘T obstinate or antiauthoritarian; they were thinkers. They had learned what happens when hatred and inhumanity are accepted. Both my father and my mother were brave people who lived by their values. They had personally experienced what happens when an entire country chooses not to see something simply because it is not what they wish to see. As a result, they never accepted anything at face value. When something doesn’t feel right, they taught us, you must question it—whether it is an instruction from an authority or what a teacher says in class. At the same time, my parents didn’t dwell on the past or on things that were done to them. They didn’t forget the past, and they definitely learned from it, but Ilse and Werner Heumann moved forward. Especially Ilse. She was an optimist. And a fighter. And so am I.

We believed we were supposed to 'cope' as best we could. As we talked, we realized the disability itself was not that big a deal for us. We had all learned to accept our physical limitations. What made life difficult was not the disability, but the lack of services and support, the lack of accessibility, the unfair and stereotypical ways in which we were treated, the pity doled out for us all our lives. Often, after a meeting, I wrote my thoughts down in a notebook. 'It's not my fault that I'm disabled, yet I've been made to feel that it is,' I wrote. 'My polio never made me unhappy; people made me unhappy. Ever since I was a little girl, people have always made me feel I was no good because I was disabled. From Sicilian women and the nuns to the doctors who couldn't fix me, to my fellow students and prospective employers... and even my own parents.' As I wrote, my tears fell and stained the pages - tears of anger, of relief and of new hope.

After I composed myself, Sister Janja told me this little boy’s story. He was placed in the orphanage at a young age when his mother, a single parent, became unable to care for him due to disability. Sister said that a beautiful and loving family adopted Boris a couple of years ago. She also said that she had not heard anything more about the child in years until just recently, when she was told a remarkable story. About three weeks earlier, Boris had woken up at one o’clock in the morning and had run into his parents’ room in tears. When his mother asked him what was wrong, he said between sobs that he had dreamed she had died. The mother hugged her son and assured him that she was just fine, letting him sleep the rest of the night between her and her husband. At eight o’clock the next morning, Boris’s mother got a call from a woman at the social services office in Central Bosnia. She called to say that Boris’s biological mother had passed away in the night.

Scientists have known for a while that high-reactive temperaments come with risk factors. These kids are especially vulnerable to challenges like marital tension, a parent’s death, or abuse. They’re more likely than their peers to react to these events with depression, anxiety, and shyness. Indeed, about a quarter of Kagan’s high-reactive kids suffer from some degree of the condition known as “social anxiety disorder,” a chronic and disabling form of shyness. What scientists haven’t realized until recently is that these risk factors have an upside. In other words, the sensitivities and the strengths are a package deal. High-reactive kids who enjoy good parenting, child care, and a stable home environment tend to have fewer emotional problems and more social skills than their lower-reactive peers, studies show. Often they’re exceedingly empathic, caring, and cooperative. They work well with others. They are kind, conscientious, and easily disturbed by cruelty, injustice, and irresponsibility. They’re successful at the things that matter to them. They don’t necessarily turn into class presidents or stars of the school play, Belsky told me, though this can happen, too: “For some it’s becoming the leader of their class. For others it takes the form of doing well academically or being well-liked.

Each of the three recognized categories—care, service, and education—would encompass a wide range of activities, with different levels of compensation for full- and part-time participation. Care work could include parenting of young children, attending to an aging parent, assisting a friend or family member dealing with illness, or helping someone with mental or physical disabilities live life to the fullest. This category would create a veritable army of people—loved ones, friends, or even strangers—who could assist those in need, offering them what my entrepreneur friend’s touchscreen device for the elderly never could: human warmth. Service work would be similarly broadly defined, encompassing much of the current work of nonprofit groups as well as the kinds of volunteers I saw in Taiwan. Tasks could include performing environmental remediation, leading afterschool programs, guiding tours at national parks, or collecting oral histories from elders in our communities. Participants in these programs would register with an established group and commit to a certain number of hours of service work to meet the requirements of the stipend. Finally, education could range from professional training for the jobs of the AI age to taking classes that could transform a hobby into a career. Some recipients of the stipend will use that financial freedom to pursue a degree in machine learning and use it to find a high-paying job.

MY PROCESS I got bullied quite a bit as a kid, so I learned how to take a punch and how to put up a good fight. God used that. I am not afraid of spiritual “violence” or of facing spiritual fights. My Dad was drafted during Vietnam and I grew up an Army brat, moving around frequently. God used that. I am very spiritually mobile, adaptable, and flexible. My parents used to hand me a Bible and make me go look up what I did wrong. God used that, as well. I knew the Word before I knew the Lord, so studying Scripture is not intimidating to me. I was admitted into a learning enrichment program in junior high. They taught me critical thinking skills, logic, and Greek Mythology. God used that, too. In seventh grade I was in school band and choir. God used that. At 14, before I even got saved, a youth pastor at my parents’ church taught me to play guitar. God used that. My best buddies in school were a druggie, a Jewish kid, and an Irish soccer player. God used that. I broke my back my senior year and had to take theatre instead of wrestling. God used that. I used to sleep on the couch outside of the Dean’s office between classes. God used that. My parents sent me to a Christian college for a semester in hopes of getting me saved. God used that. I majored in art, advertising, astronomy, pre-med, and finally English. God used all of that. I made a woman I loved get an abortion. God used (and redeemed) that. I got my teaching certification. I got plugged into a group of sincere Christian young adults. I took courses for ministry credentials. I worked as an autism therapist. I taught emotionally disabled kids. And God used each of those things. I married a pastor’s daughter. God really used that. Are you getting the picture? San Antonio led me to Houston, Houston led me to El Paso, El Paso led me to Fort Leonard Wood, Fort Leonard Wood led me back to San Antonio, which led me to Austin, then to Kentucky, then to Belton, then to Maryland, to Pennsylvania, to Dallas, to Alabama, which led me to Fort Worth. With thousands of smaller journeys in between. The reason that I am able to do the things that I do today is because of the process that God walked me through yesterday. Our lives are cumulative. No day stands alone. Each builds upon the foundation of the last—just like a stairway, each layer bringing us closer to Him. God uses each experience, each lesson, each relationship, even our traumas and tragedies as steps in the process of becoming the people He made us to be. They are steps in the process of achieving the destinies that He has encoded into the weave of each of our lives. We are journeymen, finding the way home. What is the value of the journey? If the journey makes us who we are, then the journey is priceless.

PATTERNS OF THE “SHY” What else is common among people who identify themselves as “shy?” Below are the results of a survey that was administered to 150 of my program’s participants. The results of this informal survey reveal certain facts and attitudes common among the socially anxious. Let me point out that these are the subjective answers of the clients themselves—not the professional opinions of the therapists. The average length of time in the program for all who responded was eight months. The average age was twenty-eight. (Some of the answers are based on a scale of 1 to 5, 1 being the lowest.) -Most clients considered shyness to be a serious problem at some point in their lives. Almost everyone rated the seriousness of their problem at level 5, which makes sense, considering that all who responded were seeking help for their problem. -60 percent of the respondents said that “shyness” first became enough of a problem that it held them back from things they wanted during adolescence; 35 percent reported the problem began in childhood; and 5 percent said not until adulthood. This answer reveals when clients were first aware of social anxiety as an inhibiting force. -The respondents perceived the average degree of “sociability” of their parents was a 2.7, which translates to “fair”; 60 percent of the respondents reported that no other member of the family had a problem with “shyness”; and 40 percent said there was at least one other family member who had a problem with “shyness.” -50 percent were aware of rejection by their peers during childhood. -66 percent had physical symptoms of discomfort during social interaction that they believed were related to social anxiety. -55 percent reported that they had experienced panic attacks. -85 percent do not use any medication for anxiety; 15 percent do. -90 percent said they avoid opportunities to meet new people; 75 percent acknowledged that they often stay home because of social fears, rather than going out. -80 percent identified feelings of depression that they connected to social fears. -70 percent said they had difficulty with social skills. -75 percent felt that before they started the program it was impossible to control their social fears; 80 percent said they now believed it was possible to control their fears. -50 percent said they believed they might have a learning disability. -70 percent felt that they were “too dependent on their parents”; 75 percent felt their parents were overprotective; 50 percent reported that they would not have sought professional help if not for their parents’ urging. -10 percent of respondents were the only child in their families; 40 percent had one sibling; 30 percent had two siblings; 10 percent had three; and 10 percent had four or more. Experts can play many games with statistics. Of importance here are the general attitudes and patterns of a population of socially anxious individuals who were in a therapy program designed to combat their problem. Of primary significance is the high percentage of people who first thought that “shyness” was uncontrollable, but then later changed their minds, once they realized that anxiety is a habit that can be broken—without medication. Also significant is that 50 percent of the participants recognized that their parents were the catalyst for their seeking help. Consider these statistics and think about where you fit into them. Do you identify with this profile? Look back on it in the coming months and examine the ways in which your sociability changes. Give yourself credit for successful breakthroughs, and keep in mind that you are not alone!

Another unnerving aspect of the homestudy is the checklist you have to fill out to indicate what kind of child you are willing to accept. Will you take a child with a physical deformity? A medical condition? Cognitive delays? What race are you open to? Will you take siblings? What ages are you willing to accept? Filling out this checklist felt like a measure of my humanity. I felt like, if I was truly unselfish, I would check yes on every single box. What kind of person says no to a child with a disability? No to a cleft palate? What are you, a monster? These are questions most parents will never be asked. When you give birth to a child with a disability you deal with the hand you are dealt. When you get a checklist, you have to make some brutal decisions that make you feel like an asshole.

As illustrated by Woman on the Edge of Time, and as manifested in the furor surrounding McCullough and Duchesneau's reproductive choices, disability is often seen as a difference that has no place in the future. Disability is a problem that must be eliminated, a hindrance to one's future opportunities, a drag on one's quality of life. Speaking directly about the Duchesneau and McCullough case, bioethicist Alta Charo argues, “The question is whether the parents have violated the sacred duty of parenthood, which is to maximize to some reasonable degree the advantages available to their children. I'm loath to say it, but I think it's a shame to set limits on a child's potential.” Similar claims are made in opposition to same-sex parenting; critics argue that children raised in queer households will have a lower quality of life than children raised in heterosexual ones. However, in both of these situations, it is assumed not only that disability and queerness inherently and irreversibly lower one's quality of life but also that there is only one possible understanding of “quality of life” and that everyone knows what “it” is without discussion or elaboration.

...many of my young patients are genuinely incapable of managing their own lives. Their parents have taken the reins...They have reached the conclusion that not only are they poorly equipped to deal with life, there's nothing they can do about it. They have no options or sense of agency. The term for that is learned helplessness: the belief that nothing you do can impact your environment. Accumulated disability is "I don't have the skills to do this." Learned helplessness is "It doesn't matter what I do. I'm powerless." These two conditions are intertwined - the teenagers' accumulated disabilities give credence to their belief that they don't have the skills or courage to change their situation.

The degree to which a person experiences feelings of shame depends on two variables: the way other people are treating him (with admiration and respect, or with contempt and disdain), and the degree to which he himself already feels proud or ashamed. The more a person is shamed by others, from childhood by parents or peers who ridicule or reject him, the more he is likely to feel chronically shamed, and hypersensitive to feelings and experiences of being shamed, sometimes to the point of feeling that others are treating him with contempt or disdain even when they are not. For such people, and they are the rule among the violent, even a minor sign of real or imagined disrespect can trigger a homicidal reaction. The purpose of violence is to force respect from other people. The less self-respect people feel, the more they are dependent on respect from others; for without a certain minimal amount of respect, from others or the self, the self begins to feel dead inside, numb and empty. That is how the most violent criminals told me they felt, and it is clear that it is the most intolerable of all feelings (though it is actually an absence of feeling, lack of the feeling of pride, or self-love). When people lack self-respect, and feel they are incapable of eliciting respect from others in the form of admiration for their achievements or their personalities, they may see no way to get respect except in the form of fear, which I think of as a kind of ersatz substitute for admiration; and violence does elicit fear, as it is intended to. For example, I have spoken to many violent criminals who spoke of how gratifying it was to see fear in the eyes of their victims. Feelings of shame and self-contempt are often overlooked by others, because the people who experience them do their best to conceal such feelings behind a defensive mask of bravado and boasting. There is nothing more shameful than to feel ashamed — it reveals that a person has something to feel ashamed about. Why are these feelings of shame and self-contempt so bottomless, chronic, and almost ineradicable in the most violent men? Because, in the men I knew, they had been subjected to a degree of child abuse that was off the scale of anything I had previously thought of describing with that term. Many had been beaten nearly to death, raped repeatedly or prostituted, or neglected to a life-threatening degree by parents too disabled themselves to care for their child. And of those who had not experienced those extremes of physical abuse and neglect, my colleagues and I found that they had experienced a degree of emotional abuse that had been just as damaging: being focused on as the parents' emotional "whipping boy," in which they served as the scapegoat for whatever feelings of shame and humiliation their parents had suffered and then attempted to rid themselves of by transferring them onto their child, by subjecting him to systematic and chronic shaming and humiliation, taunting and ridicule.

We have an almost equal mix of children with and without disabilities. Thorin wouldn’t be the only child with Down syndrome.” Ward asked, “How’d you create that ratio? Why would parents when’d their children here if they didn’t have a disability?” Louise smiled. “Some parents believe diversity of all kinds is important to their children’s development. Also we have numerous siblings here. Parents want their children at the same school.

boasting about grabbing women by the genitals, a presidential candidate mocking a disabled reporter, arms and hands flailing, face jerking as might a middle schooler’s, a presidential candidate deriding the grieving parents of an American war hero who happened to be Muslim. A presidential candidate demeaning an American war hero, John McCain, because he had been captured. The latest breaking news report would be announced before we had even absorbed the last one, a new lexicon forming before our eyes.

How cool could it have been if, when my parents received news of my blindness, their first gut reaction could have been something like, “Oh, then she’ll be just like my old friend from high school!” Instead of facing gloomy scenarios or the pitying comments of others, my parents would have been prepared, with positive associations to someone who shared my disability.

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.

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.

Disabilities mean nothing if you have a loving parent Parent of a child with a disability must have love Love endures and gives love and support Support your child and be thankful for every second Second of praying means a lot to God to parents Parents Exist

Death is a difficulty, but it is not a punishment for the wrongdoings of our first parents; life is difficult, but it is not a trial through which we must pass to earn an eternal reward. Mortality is not a wounding disability but the enabling condition that lends life its intensity, tenderness, poignancy, and beauty, let us say its wounded glory, the difficult glory, that has tasted the bitter truth.

Institutionalization and ‘special housing' At the time of the passage of the ADA, states still had laws on the books requiring people with mental disabilities to be institutionalized. Not even slaves had been so restricted. "Spurred by the eugenics movement," write legal historians Morton Horwitz, Martha Field and Martha Minow, "every state in the country passed laws that singled out people with mental or physical disabilities for institutionalization." The laws made it clear that the state's purpose was not to benefit disabled people but to segregate them from "normal" society. Thus, statutes noted that the disabled were segregated and institutionalized for being a "menace to society" [and] so that "society [might be] relieved from the heavy economic and moral losses arising from the existence at large of these unfortunate persons." "The state of Washington made it a crime for a parent to refuse state-ordered institutionalization," they wrote; "once children were institutionalized, many state laws required parents to waive all custody rights." Justice Thurgood Marshall wrote in the 1985 Cleburne Supreme Court decision (the decision saying that people with mental retardation did not constitute a "discrete and insular" minority) that this "regime of state-mandated segregation and degradation [had] in its virulence and bigotry rivaled, and indeed paralleled, the worst excesses of Jim Crow. Massive custodial institutions were built to warehouse the retarded for life." Yet they continue today. In 1999, the Supreme Court in its Olmstead decision acknowledged that the ADA did in fact require states to provide services to people with disabilities in the "most integrated setting"; but institutionalization continued, because federal funds  -- Medicaid, mostly  -- had a built-in "institutional bias," the result of savvy lobbying over the years by owners of institutions like nursing homes: In no state could one be denied a "bed" in a nursing home, but in only a few states could one use those same Medicaid dollars to get services in one's home that were usually much less expensive. Ongoing battles were waged to close down the institutions, to allow the people in them to live on their own or in small group settings. But parents often fought to keep them open. When they did close, other special facilities cropped up.

Although the move to deinstitutionalization had begun in the 1960s in the wake of findings of abuse and horrid conditions in the large warehouses  -- people tied to beds, lying in their own feces; people covered with bruises and abrasions from beatings; people with sores infested with maggots  -- those who should have been most horrified at the conditions, the parents of those who were kept there, often fought to keep them open. Critics charged that the parents simply wanted them open so they would not have to deal with offspring they saw only as burdens, that this was why they had put them there in the first place. It was a fact that those wanting to keep the warehouses open were invariably the families of the people who were housed in them. The families downplayed the reports of abuse and foul conditions. Just as officials had insisted the special New York streetside toilets be kept locked for the safety of the disabled, the families worried that life in "the community" (which was how the organized disabled referred to the move to have such people live in small groups of three or four in a neighborhood, with helpers) would be unsafe for their offspring.

The Department of Justice was charged with enforcing the 1980 Civil Rights of Institutionalized Persons Act, but did little. Poor enforcement had led to Congressional investigations in 1983 and 1985; in a 1984 issue of the Nebraska Law Review, Robert Dinerstein wrote that "as a result of …its utter failure to enforce CRIPA, The Department of Justice has manifestly failed to extend to institutionalized disabled persons the rights that are properly theirs." John Kip Cornwell, writing in the November 1987 Yale Law Review, leveled similar charges, as did the University of Minnesota's Mary Hayden in 1998, over a decade later. She said the DOJ relied too much on conciliation, showing "solicitousness for the prerogatives of state officials or parents who support institutionalization" rather than for the people who were being kept in the institutions.

If the plan succeeded, it would be a step to bring about the kind of golden age envisioned by Confucius millennia ago: “And then men would care for all elders as if they were their own parents, love all children as if they were their own children. The aged would grow old and die in security; the youthful would have opportunities to contribute and prosper; and children would grow up under the guidance and protection of all. Widows, orphans, the disabled, the diseased—everyone would be cared for and loved.

If genius springs from genetics, a meritocracy is hardly more just than the divine right of kings; it, too, mythologizes inherent superiority. If genius results from labor, then brilliant people deserve the kudos and wealth they reap. The communist perspective is that everyone can be a genius if he will only work at it; the fascist perspective is that born geniuses are a different species from the rest of humanity. Many people fall short of their potential through lack of discipline, but a visit to a coal mine will amply demonstrate that hard work on its own neither constitutes genius nor guarantees riches. The history of high intelligence is no less political than the history of intellectual disability or of mental illness.

Williams and his researcher marveled morbidly about how incompetent some of these suicide bombers seemed to be. One had strapped on his vest, traveled to say goodbye to his parents, and accidentally detonated his device during the visit, taking his own life and theirs. But when Williams reflected on it, the pattern seemed tragic. Presumably such failures indicated how many suicide bombers recruited to die in Afghanistan might be coerced, naïve, illiterate, young, or disabled.4

I guess it’s true for most parents, but I’ve definitely noticed in parents of disabled people—sometimes we fall into the trap of thinking sacrificing everything is the greatest measure of our love.

Control is the product of your disabled will. It is an attempt to will what cannot be willed. You cannot change another person. You cannot fix your parents, spouse, lover or children. You cannot control their lives or their pain.

Disability isn’t a choice, but neurodevelopmental disabilities are often treated as though they are.

Like kids who loved and pitied their ill, disabled parents, so did we love and pity our country; we worried for it, and we revered it, and we wished desperately for it to get well.

Being neurodivergent doesn’t mean a person is broken or needs to be fixed. They need support to access the world around them. The solution to helping someone who needs a wheelchair get up steps isn’t to teach them to walk; it is to build a ramp. The solution for someone who has a disability based on their neurological wiring isn’t to tell them to try harder; it is to build (and help them build for themselves) accommodations that allow them to thrive.

Recognizing a disability requires us to become comfortable with vulnerability. Self-advocacy begins with recognizing disability without shame. When we give our children permission to recognize their difficulties, we liberate them to ask for accommodations. We empower them to look beyond the status quo and find the solutions that work for them, instead of trying to use the solutions that work for other people. And we provide a framework for self-understanding and self-acceptance that is the key for neurodivergent people of all ages.

My life as a parent was a battleground for various belief systems,” she writes,[43] “all of which had one thing in common: an inability to come to terms with human variability.” Singer and her family were disabled in a way that no one knew how to name, so she created a name for them: they were neurodiverse, and they suffered because the world demanded they be neurotypical. These terms would be popularized by journalist Harvey Blume and widely adopted by disability advocates a few years later. The label neurodiverse includes everyone from people with ADHD, to Down Syndrome, to Obsessive-Compulsive Disorder, to Borderline Personality Disorder.

After the initial, unavoidably chaotic lockdown period in the spring of 2020, we should have paid more attention to the toll of online learning: the terrible equity impacts on lower-income families who didn’t have the tech; the way it left out many students with developmental disabilities who needed in-person supports; the way it made it impossible for single parents to work outside the home and often inside it, with devastating effects for mothers in particular; the mental health impacts that social isolation was having on countless young people. The solution was not to fling open school doors where the virus was still surging and before vaccines had been rolled out. But where were the more spacious discussions about how to reimagine public schools so that they could be safer despite the virus—with smaller classrooms, more teachers and teacher’s aides, better ventilation, and more outdoor learning? We knew early on that teens and young adults were facing a mental health crisis amid the lockdowns—so why didn’t we invest in outdoor conservation and recreation programs that could have pried them away from their screens, put them in communities of other young people, generated meaningful work for our ailing planet, and lifted their spirits all at the same time?

Berenson wrote that Lilly told its sales representatives to suggest doctors prescribe Zyprexa to older patients with symptoms of dementia, even though this was an unapproved use. I have learned that staff at nursing homes like prescribing Zyprexa and other neuroleptics to their patients because it disables them so much they aren't any trouble; in many cases, they can't even get out of bed anymore. Worse, Zyprexa doubles the death rate for the elderly. As Mr. Berenson reported, Zyprexa carries a prominent ("black box") warning that it increases the risk of death in the elderly. People tell me that when their parents die after being given a neuroleptic such as Zyprexa, the doctor says something along the lines of, "Well, your mother was old." I have also heard stories from people who tell me their parent dramatically improved once they were taken off Zyprexa or other neuroleptics.

Your five-year-old son wanders around his kindergarten classroom distracting other kids. The teacher complains: he can’t sit through her scintillating lessons on the two sounds made by the letter e. When the teacher invites all the kids to sit with her on the rug for a song, he stares out the window, watching a squirrel dance along a branch. She’d like you to take him to be evaluated. And so you do. It’s a good school, and you want the teacher and the administration to like you. You take him to a pediatrician, who tells you it sounds like ADHD. You feel relief. At least you finally know what’s wrong. Commence the interventions, which will transform your son into the attentive student the teacher wants him to be. But obtaining a diagnosis for your kid is not a neutral act. It’s not nothing for a kid to grow up believing there’s something wrong with his brain. Even mental health professionals are more likely to interpret ordinary patient behavior as pathological if they are briefed on the patient’s diagnosis.[15] “A diagnosis is saying that a person does not only have a problem, but is sick,” Dr. Linden said. “One of the side effects that we see is that people learn how difficult their situation is. They didn’t think that before. It’s demoralization.” Nor does our noble societal quest to destigmatize mental illness inoculate an adolescent against the determinism that befalls him—the awareness of a limitation—once the diagnosis is made. Even if Mom has dressed it in happy talk, he gets the gist. He’s been pronounced learning disabled by an occupational therapist and neurodivergent by a neuropsychologist. He no longer has the option to stop being lazy. His sense of efficacy, diminished. A doctor’s official pronouncement means he cannot improve his circumstances on his own. Only science can fix him.[16] Identifying a significant problem is often the right thing to do. Friends who suffered with dyslexia for years have told me that discovering the name for their problem (and the corollary: that no, they weren’t stupid) delivered cascading relief. But I’ve also talked to parents who went diagnosis shopping—in one case, for a perfectly normal preschooler who wouldn’t listen to his mother. Sometimes, the boy would lash out or hit her. It took him forever to put on his shoes. Several neuropsychologists conducted evaluations and decided he was “within normal range.” But the parents kept searching, believing there must be some name for the child’s recalcitrance. They never suspected that, by purchasing a diagnosis, they might also be saddling their son with a new, negative understanding of himself. Bad

The current Bishop Prelate of Opus Dei caused a huge outcry in 1997, when he asserted that 90% of disabled children, according to 'scientific research', were born to couples who had 'not entered into marriage in a pure state', and were thus paying for the sinfulness of their parents.

When a child is loved as a child, it does not matter if they are boy or girl, abled-body or disabled, elven or human, true parental love is not skin deep but it penetrates deep down right into the soul.

Some parents manufacture an affirmative construction of their child's disability to disguise their despair, while others have a deep and genuine experience of joy in caring for disabled children, and that sometimes the first stance can generate the second.

In typical circumstances, to have children who won't care for you in your dotage is to be King Lear. Disability changes the reciprocity equation.

Those, disabled people, however, may be angered by the prospect of interventions that would make them function more like non-disabled people without mitigating the hard reality of their disabling condition. Some may even curse the contraptions that keep them going.

For God’s sake, Eve Windham, it was just a kiss under the mistletoe, probably inspired by your papa’s wassail more than anything else.” She had to put her hand on his arm while the feeling of the ground shifting beneath her feet swept over her. “My brothers said it was white rum.” “The occasional tot makes the holiday socializing less tedious. You really do not look well.” The last observation was grudging, almost worried. “I did not mean to swill from your glass, Deene. You should have stopped me.” They had to get to the coach. The night felt like it was closing in, and Deene’s voice—a perfect example of male aristocratic euphony—was swelling and shrinking in the oddest way. “I might have stopped you, except you downed the whole drink before I realized what was afoot, and then you were accosting me in the most passionate—” Eve clutched his arm and swayed into him, breathing shallowly through her mouth. “If you insist on arguing with me, my lord, I will be ill all over these bushes.” “Why didn’t you say so?” He slipped an arm around her waist and promenaded her down the steps. By the time they got to the garden gate, the nausea was subsiding, though Eve was leaning heavily on her escort. She had the notion that the scents of cedar and lavender coming from Deene’s jacket might have helped quiet her stomach. Deene ushered her through the gate, which put them on a quiet, mercifully dark side street. “How often do these headaches befall you?” “Too often. Sometimes I go for months between attacks, sometimes only days. The worst is when it hits on one side, subsides for a day, then strikes on the other.” Deene pulled one of his gloves off with his teeth, then used two fingers to give a piercing, three-blast whistle. “Sorry.” All the while he kept his arm around Eve’s waist, a solid, warm—and quite unexpected—bulwark against complete disability. “The coach will here in moments. Is there anything that helps?” “Absolute quiet, absolute dark, time.” Though her mother used to rub her neck, and that had helped the most. He said nothing more—Deene wasn’t stupid—and Eve just leaned on him. Her grandmother had apparently suffered from these same headaches, though neither Eve’s parents nor her siblings were afflicted. The clip-clop of hooves sounded like so much gunfire in Eve’s head, but it was the sound of privacy, so Eve tried to welcome it. Deene gave the coachy directions to the Windham mansion and climbed in after Eve. “Shall I sit beside you, my lady?” An odd little courtesy, that he would even ask. “Please. The less I move, the less uncomfortable I am.” He settled beside her and looped an arm around her shoulders. Without a single thought for dignity, skirmishes, or propriety, Eve laid her head on his shoulder, closed her eyes, and was grateful. ***

Intuitively we all know that it is better to feel than to not feel. Our emotions are not a luxury but an essential aspect of our makeup. We have them not just for the pleasure of feeling but because they have crucial survival value. They orient us, interpret the world for us, give us vital information without which we cannot thrive. They tell us what is dangerous and what is benign, what threatens our existence and what will nurture our growth. Imagine how disabled we would be if we could not see or hear or taste or sense heat or cold or physical pain. To shut down emotions is to lose an indispensable part of our sensory apparatus and, beyond that, an indispensable part of who we are. Emotions are what make life worthwhile, exciting, challenging, and meaningful. They drive our explorations of the world, motivate our discoveries, and fuel our growth. Down to the very cellular level, human beings are either in defensive mode or in growth mode, but they cannot be in both at the same time. When children become invulnerable, they cease to relate to life as infinite possibility, to themselves as boundless potential, and to the world as a welcoming and nurturing arena for their self-expression. The invulnerability imposed by peer orientation imprisons children in their limitations and fears. No wonder so many of them these days are being treated for depression, anxiety, and other disorders. The love, attention, and security only adults can offer liberates children from the need to make themselves invulnerable and restores to them that potential for life and adventure that can never come from risky activities, extreme sports, or drugs. Without that safety our children are forced to sacrifice their capacity to grow and mature psychologically, to enter into meaningful relationships, and to pursue their deepest and most powerful urges for self-expression. In the final analysis, the flight from vulnerability is a flight from the self. If we do not hold our children close to us, the ultimate cost is the loss of their ability to hold on to their own truest selves.