“Defective is an adjective that has long been deemed too freighted for liberal discourse, but the medical terms that have supplanted it—illness, syndrome, condition—can be almost equally pejorative in their discreet way. We often use illness to disparage a way of being, and identity to validate that same way of being. This is a false dichotomy. In physics, the Copenhagen interpretation defines energy/matter as behaving sometimes like a wave and sometimes like a particle, which suggests that it is both, and posits that it is our human limitation to be unable to see both at the same time. The Nobel Prize–winning physicist Paul Dirac identified how light appears to be a particle if we ask a particle-like question, and a wave if we ask a wavelike question. A similar duality obtains in this matter of self. Many conditions are both illness and identity, but we can see one only when we obscure the other. Identity politics refutes the idea of illness, while medicine shortchanges identity. Both are diminished by this narrowness.Physicists gain certain insights from understanding energy as a wave, and other insights from understanding it as a particle, and use quantum mechanics to reconcile the information they have gleaned. Similarly, we have to examine illness and identity, understand that observation will usually happen in one domain or the other, and come up with a syncretic mechanics. We need a vocabulary in which the two concepts are not opposites, but compatible aspects of a condition. The problem is to change how we assess the value of individuals and of lives, to reach for a more ecumenical take on healthy. Ludwig Wittgenstein said, ―All I know is what I have words for.‖ The absence of words is the absence of intimacy; these experiences are starved for language.”

“Fixing is the illness model; acceptance is the identity model; which way any family goes reflects their assumptions and resources.”

“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.”

“If you are reading this book and you feel that way too then you are not alone. I understand how you feel. I think that anyone who has suffered from even mild depression understands how it feels. Yet we forget that others understand our suffering. We withdraw, isolate or shut down completely. We lose ourselves in our selves, and in the illness.It doesn’t have to be that way. If we connect with even one other human being who understands, we take one step out of the illness. Life is about connection. There is nothing else. Depression is the opposite; it is an illness defined by alienation. So I offer this book by way of connection. I offer it, too, as a source of hope. I hope that by sharing what I was like, what happened and what I am like now, that it may bring someone else comfort.”

“Light is a particle and a wave. This is hard to understand, how a thing can be two things at once. But a woman is also both a particle and a wave. She’s a wave when you see her reach down to pull a shell from the sea, and you feel her beauty pass through you like electrical current. She’s a particle when her hair brushes your face, and her hands push into yours”

“I wish I'd been accepted sooner and better. When I was younger, not being accepted made me enraged, but now, I am not inclined to dismantle my history. If you banish the dragons, you banish the heroes--and we become attached to the heroic strain in our personal history. We choose our own lives. It is not simply that we decide on the behaviors that construct our experience; when given our druthers, we elect to be ourselves. Most of us would like to be more successful or more beautiful or wealthier, and most people endure episodes of low self-esteem or even self-hatred. We despair a hundred times a day. But we retain the startling evolutionary imperative for the fact of ourselves, and with that splinter of grandiosity we redeem our flaws. These parents have, by and large, chosen to love their children, and many of them have chosen to value their own lives, even though they carry what much of the world considers an intolerable burden. Children with horizontal identities alter your self painfully; they also illuminate it. They are receptacles for rage and joy-even for salvation. When we love them, we achieve above all else the rapture of privileging what exists over what we have merely imagined.A follower of the Dalai Lama who had been imprisoned by the Chinese for decades was asked if he had ever been afraid in jail, and he said his fear was that he would lose compassion for his captors. Parents often think that they've captured something small and vulnerable, but the parents I've profiled here have been captured, locked up with their children's madness or genius or deformity, and the quest is never to lose compassion. A Buddhist scholar once explained to me that most Westerners mistakenly think that nirvana is what you arrive at when your suffering is over and only an eternity of happiness stretches ahead. But such bliss would always be shadowed by the sorrow of the past and would therefore be imperfect. Nirvana occurs when you not only look forward to rapture, but also gaze back into the times of anguish and find in them the seeds of your joy. You may not have felt that happiness at the time, but in retrospect it is incontrovertible.For some parents of children with horizontal identities, acceptance reaches its apogee when parents conclude that while they supposed that they were pinioned by a great and catastrophic loss of hope, they were in fact falling in love with someone they didn't yet know enough to want. As such parents look back, they see how every stage of loving their child has enriched them in ways they never would have conceived, ways that ar incalculably precious. Rumi said that light enters you at the bandaged place. This book's conundrum is that most of the families described here have ended up grateful for experiences they would have done anything to avoid.”

“Nor can we see the coffin of a person we have known, without experiencing some new shock of loss. In this respect, a coffin is like a mirror, in which we see the image of our own condition, and understand that our human differences, whether of appearance, morality or wealth, must finally be reconciled.”