Statistics tell us that by the end of this century there will be 11 billion people on this small blue globe provided it's still endurable. But will there be sufficient food and water?
Leader Mao of China started 'One child per family-politic which recently was abolished. They have well passed 1 billion over there. Likewise has India's population.
But I don't think we shall worry that much as of now the great climate change will act before 2100 AC and set us back to more than 2100 BC.
4
If life give you lemons, you can try to make lemonade. But I'd never choose lemons, and I still don't like lemonade even as it's being forced down my throat. That's how I feel about being the mother of a disabled child, regardless of how PC and feel-good you try to make it. It may not be woke to say it, but the brutal reality is that it is enraging to watch others' children move forward towards normal lives, knowing your child will never have a normal future, and when your daily life is hellish. You can't rationalize this injustice into any kind of a positive.
45
Remember, for all the "mercy" and "compassion" the toxic monotheistic faiths try to sell us on, their records historically and textually with the disabled are TERRIBLE. Like the endorsement of slavery and the oppression of women, religion is really rough on the disabled. A compassionate society is a secular society - witness the inclusive policies of avowedly secular Scandinavia. Hitchens was right - religion does poison everything. D.A., J.D., NYC
22
The United States has a long history of allowing the majority to decide the validity and value of the lives of the minority. Despite this injustice, the United States continues to propagate itself as the premier country for inclusivity and equality. To some, this inconsistency of image and actuality is upsetting but inevitable, to the rest an inexcusable misrepresentation that is rectifiable; Not a problem to be fixed progressively over generations, as people have suggested for gender and race inequality, but immediately. The way to achieve this goal is through education. We must, as a society, take it upon ourselves to make integrated and co-educational environments for students of all backgrounds and abilities. That’s not to say accelerated programs should be thrown out or honors classes abandoned, but more diverse classrooms yield more diverse ideas and inclusive innovations. Diverse classrooms must be the standard, not the exception.
My high school had an “expanded services” department which helped students with intellectual disabilities take the same courses as everyone else with added specialized curriculum. It gave “peer mentors” an opportunity to take the class with a student from expanded services to teach both students important communication, leadership, and organizational skills. The entire class, including faculty, benefited from this unintrusive and simple experience. If every institution could implement this program, misinformation and stigma could dissipate.
18
I really enjoyed this. The point about independence being impossible and dependence and caring for others being a form of love struck me. As a parent of a child with autism, I absolutely feel that the extra care I have to provide for him is an act of love but I also know that when my husband and I have passed on, there will be nobody take care of him. He needs to be independent for this reason. I have to prioritize his independence for his survival.
29
Mr. Solomon's book "Far From the Tree" is one of the few I brought with me when I moved- it is truly a wonderful and thorough examination into various 'disabilities' through the eyes of parents, doctors, and the world around us.
Not everyone with a difficult disability has a hard life, but many do, and the parents of those profoundly disabled children deserve much more respect, kindness, and warmth to be shown to them, even if it's a simple smile.
22
I really get tired of reading about the gift of a disability to enlighten the person who then enlightens the world. My 30 year old son with autism is a gift to me and to our family and friends but his autism is not a gift to him. It has caused him so much extra work and discomfort in the world. From not being able to tolerate air on his skin to not talking, he has achieved an enormous amount of skills but he will always be challenged and stand out. I have always been a disability advocate...even before I was married and had children. I will always advocate for anyone and everyone, however, if I could wave a wand and eliminate autism and other disabilities, I would. The rest of the people who think we need such diversity in the world can get it through their own suffering rather than his or theirs.
53
@jcs What an articulate explanation. I'd be standing next to you waving that wand if I could spare people like my daughter the suffering schizophrenia has caused her.
20
It's troubling to me that we lump all disabled people into one basket, as though the high-functioning autistic or Down Syndrome person is in the same "category" as a neurotypical paraplegic or a person with profound intellectual disabilities. My son has a rare chromosomal deletion...he will never have a job, fall in love, or "contribute" to society. I don't have an answer to ameliorate the lives of all disabled people, but I think a good start would be to recognise the vast differences between them.
49
@Antonia Murphy also the conflation of chronic illness with disability, which often overlap.
I have rheumatoid arthritis. I would love a cure to the pain that it causes, which is the chronic illness part. Do I care that I need a walker or cane sometimes? Only when the world gets in my way, which is the disability part - I am at a disadvantage because the world is not set up for people with mobility impairments.
Chronic illness causes distress regardless of outside circumstances. Disability is when the world just isn't set up for the way your body or brain needs to do things.
16
In America we don't treat our normal citizens well. In fact we treat anyone in need very poorly. We don't provide enough decent sheltered housing for those who need it. We don't pay the people who watch over those in need of constant care enough money to keep them in the job for more than a year. In fact care-taking jobs in America pay very little and often take a high toll on the caretakers. We're very good at warehousing people.
I think it takes courage to raise any child but especially a handicapped child. In America there is not adequate support for the family. When it comes to education those IEPs protect the schools more than they do anything for the child. I have an autistic brother. He does very well for himself and yet I still have to worry that someone will accuse him of being a sexual predator merely because he says hi to their daughter. I have to worry that if he's upset and someone calls the police he will be shot and killed.
It's very easy to write about the dignity of disabled lives. It's easy to condemn parents who abort a fetus with a serious genetic defect. It's easier to deal with a handicapped child than a handicapped adult. Until our society changes its attitudes about helping handicapped people and their families I would advise parents who know that the child will be born with a severe problem not to have the child. It's hard enough to raise a normal child.
9/2/2019 7:53pm
37
I loved this and, as the mom of a child with autism, I was totally down with what this author had to say. Happiness is all about the meaning you find in the life you have with the child you have. This is not to say that life with a disabled child isn't very, very challenging at times. But for me, the most most true sentence in this article is "the fact that you wouldn’t have chosen something doesn’t mean that you can’t find joyful meaning in it."
22
@Elizabeth
Beautifully stated! Thank you!
Your child is indeed fortunate to have you as a parent!
8
Mr. Solomon forgot one thing, in an otherwise essential and wonderful article. The horrible belief common to hipsters and other boho types thaat creativity is close to maddness. And because of a handful of disabled writers whose disbilities outweighted their talent, and were lioniazed for sitting around all day raving out of their heads. all you have to do is remember what happened to say Sylvia Plath and Virginia Woolfe to understand how wrong, horrible, and ablist this belief is. And does a disservice to someone great, like Van Gogh, who used his disability to spread love, life, health, and happiness in every painting he did. Or to disabled musicians like Roky Ericson and Daniel Jonston, Brian Wilson, and Syd Barret who tried their best to companste for their disabilites.
I am a disabled writer who struggles with this perception, or worse, denied work because of my disability because I do not conform to stereotypes about disabled writers. And I want it all to be gone, so that the disabled who are creative can work without this awful, and discrimintory attitude.
17
In Iceland, only one or two babies with Down syndrome are born every year. Nearly 100% of Icelandic mothers who learn that their babies have Down syndrome abort them. Other Scandinavian countries have similar termination rates of disabled babies. In the US, the rate is about 68% aborted.
I was surprised not to see this mentioned in this article. It’s hard to see how we can pat ourselves on the back for the improvement in disabled people’s lives and treatment, if we are killing so many of them in the womb. Will children in Iceland grow up with patience and compassion for the disabled and dependent?
27
@Maggie It is hard to see what you are getting at. Have the baby in order to develop compassion and patience in the general population? I think other considerations have to prevail -- the mother and father, their choice, their ability to take care of this child, the resources available to them post-birth and for a life-time.
69
@Maggie
There will always be plenty of people already born, who will develop disabilities and chronic illnesses. There will always be terrible, crippling accidents and wars, disasters of many kinds-- some man-made. Not to mention the infirmities of age. Is American society so advanced and empathetic that we take care of all these folks adequately? If a few less people suffer because a choice becomes available to predict genetic disability before birth, and some women decide on abortion, I fail to see that as such a bad thing.
42
Oops-- you forgot to mention the inherent value of a person's life if they have Down Syndrome and the contributions that person can make to their community and family despite not being neurotypical. There-- fixed it for you.
14
My father was a hunchback, I’m a hunchback, no way I’m going to make one myself. Rhapsodizing about misery is only something morons do.
24
It's politically correct to talk about the dignity of the disabled. No one talks about what I know best: how having disabled children can ruin the life of parents and siblings and make life a living hell. Don't quote me Nazi population theories, quote me some compassion for those condemned to take care of their disabled kin.
46
Bravo!
re "The bull looks different when you're inside the ring", when the disability is adventitious, one gains the advantage of seeing (knowing) the bull both from outside and inside the ring... fodder for growth.
http://www.sdplus.org/im-listeningbut-i-can-barely-hear-you/
2
As we pollute our air and water with greed-oriented policies and allow our food supply to be genetically altered to enable it to be more resilient to being doused with pesticides, we can look forward to having more families emotionally and financially devastated by serious disabilities. While some disabilities are genetic or caused by accidents, we as a society are choosing policies that increase the number of people with difficult and life-altering problems. We should talk about our own collective responsibility more and own it. Defiling our planet for profit causes untold suffering. Ask the families in Flint in a few years as their children struggle to make it as adults.
17
"We have learned to value most people, and with that social advancement has come progress in improving their lives."
Unless they're in the womb! What an ideal time for a sophisticated and progressive society like ours to kill a disabled human being whose life just isn't worth living.
4
I am disabled with bipolar disorder, undiagnosed until I was 51. Being judged *unfit* inevitably leads to a "Sophie's Choice." Do what you want and lose someone you love / Do what they want and destroy yourself.
My first judgment of being *unfit* came from my ex-husband, who forced me to have an abortion, or he'd leave. When I asked for another child, he said no again because I'd be an unfit mother. Then I left -- no husband; no child.
The second judgment came 20 years later, when I was taken to the hospital for a gallbladder operation. The "friends" who agreed to be my support system wanted my parrot of 27 years. When I took him back, the wealthy, uxorious husband used the unfit mother prosecution again. This time, I gave them up and kept my parrot.
If I had had the courage to give up the man I married, I would have had a child. My "choice" is going to haunt me until the day I die.
Also, when anyone helps you, they want you to do things their way, or even worse, to be tearfully thankful. I won't do either, and have tolerated opprobrious, haughty, dismissive outrage.
Last, I am not sure who plays Richard III in the mass-shooting drama choking our country. Paraphrase: Since the heavens have shaped my life so, let a machine gun make crooked my mind to answer it. Do you think the speaker is the NRA or the mass shooter?
10
@Barbara Steinberg You made a very good choice taking your parrot back. Another good choice leaving your husband. With medication and some support from your partner, you'd probably be a fine mother. There are no guarantees. Nobody gets guarantees.
8
“Three generations of imbeciles are enough.”
I wonder what exactly Oliver Wendell Holmes meant here? It seems like he was referring to very low cognitive ability (rather than any sort of physical handicap) but being of extremely low intelligence doesn’t seem inherited: most families have some bright stars; some not-so-bright; and rarely someone born with a severe intellectual disability. I’ve literally never met a family with multiple consecutive generations of folks with IQ < 70. But maybe I just need to get out more....
6
Numerous doctors told my parents I would be unable to walk, talk, or feed myself. They encouraged my parents to stop treatment and let me die. In those days they killed premature babies by allowing them to starve to death.
This is how my life turned out. IQ in the 150s; two advanced degrees; more than a decade of military service. Some years ago it was suggested I have mild cerebral palsy. I take skeletal muscle relaxers, suffer from chronic pain, and can expect to undergo surgeries for spinal deformities, but that is about it. I wish I could find those doctors who treated me in infancy.
There are a great many people who, after diagnoses of disability, have gone on to lead enriching lives despite the prophesies of haughty doctors who assumed they could predict the future. The author of this piece is absolutely right: compassion and hope are key.
38
Yesterday in the NYT, I read how some prepare for Harvard. I couldn't learn much in school as I had violent parent's. This began during infancy as I checked my partial benign memories. My mom was surprised I remembered. She told me of more. It's not safe to slap a baby. So called dad used his fists for some time before leaving when I was 11. I could read well and I first learned how people got along without fighting by observation and practice. My brain settled down and I began learning in the military. One learns from pain only and unless it's managed and not too much too long. Then, I look to the out door. Far to many are going out that door given the collateral damage of the poorly constructed/used data on the opioid crisis. I'm not a human having or doing. I'm a human being.
7
It has been my privilege and joy to work as a teacher of children with disabiities for many years. Now, in retirement, I am called to do so again. So, I feel the joy and the stimulation to go on each day as I watch my students grow and change. The other joy is to see that so many teachers, nurses, administrators, custodians, and others feel as I do. When people say it must take a special person to work with those who have disabilities, I think...."no, it just takes a clear idea of who has limitations and who does not." Don't we all have some limitations? Community is the key. I will sign up to be included in the discussion Dr. Solomon has begun. Thanks for listening to an older teacher who remains with her most precious students.
24
@Patricia Allan
My hat is off to you!!!
5
It’s always uplifting to read Andrew Solomon's wise comments about disability issues.
As the mother of a daughter with schizophrenia, I am hoping that he and this series will take on the messy issues related to the dominant trends among many disability rights organizations in relation to psychotic disorders. The perspectives of the alternative and mad movement with their anti-medical stances prevail and lead to the support of policies that are dangerous. When many people with these disorders experience the psychotic component of their illness, they have anosognosia; this is a brain-based inability for people to understand that they are ill. It is this condition that leads people to not seek nor agree to the medically based treatment they need to escape psychosis.
Unfortunately, the majority of disability rights groups refuse to recognize the existence of this condition; acknowledging it would undermine their opposition to any involuntary treatment.
The rhetoric of these groups maintains that by opposing any involuntary treatment they are defending the human rights of people ‘labeled’ with these disorders. They believe that people must always choose whatever treatment they want. These groups choose to be wilfully ignorant about the consequences of their powerful lobbying efforts; they don’t discuss the vast numbers of people with untreated psychotic disorders who end up homeless, victimized and incarcerated.
47
Our ethics are based in autonomy, our American mythos is the individualism of the pioneer and the self-made person; both are ultimately at odds with a communitarian spirit supporting the interdependent society you and I dream of, and work toward.
11
The range of skills and needs under the umbrella of the label "disabled" is so wide as to limit the practical value of many of the author's statements. I appreciate his attempts to advocate and support positive views of living with a disability. Theories are nice to have.
He clearly isn't on the front lines.
This includes in the classroom, where the parents of mainstreamed disabled children hope that the teacher is trained to effectively use the techniques their children need while providing all students with a sense of inclusion.
Too often the idealism is high but the skilled support is lacking. What happens is the neurotypical kids don't see mainstreamed kids as an asset and the teachers quit in frustration with the administration's failures.
Some disabilities cause profound physical and emotional pain. Some are fatal. I assure you that people who are suffering aren't that worried about finding joy and meaning in their disability; they are praying for a cure.
30
I understand your frustration, which is shared by many. One simple reminder: our system-wide effort toward inclusion is occurring for the first time in all of human history. In different schools and different organizations, we need a determined patience as we attempt inclusion, sometimes fail, and rework our approach.
12
Excellent points. Thank you.
5
Thank you, Andrew Solomon, for this amazingly beautifully piece. The message of acceptance and inclusion of all people in our community is so important to spread especially in the times we're living through right now.
13
Regarding Oliver Wendell Holmes' judgement about three generations of "imbeciles:" Holmes' judgement on young Carrie Buck, resulted in Carrie's sterilization after Carrie gave birth to a child conceived via seed implantation by an older family member of a foster family with whom Carrie had been placed. Carrie was then labeled "feeble-minded," a label applied to unmarried mothers as recently as the 1960's.
I suspect and believe that much of what people label as emotional and mental problems might result from neurons firing and wiring together amid societal dysfunction and, sometimes, amid systemic and deliberately inflicted brain injury. Some disabilities are inflicted. Carrie Buck's infertility was inflicted on her as was her childlessness. The foster family whose young man impregnated Carrie got to raise Carrie's child.
I have long suffered from anosognosia, a condition which in my individual case, resulted from a brain injury deliberately inflicted on me following an assault on me when I was 10. I might never have known about it if I hadn't looked at an MRI of my brain done following an accident when I was in my fifties. I often read stroke recovery is lifelong. So is recovery from deliberately inflicted brain trauma. I wonder how many people are being judged as "slow," "moody" or somehow "aberrant" instead of being screened for TBI's.
22
@Debra Merryweather
One should be skeptical of self-diagnosis.
2
@Jonathan Katz There is quite a lot of research that supports Ms Merryweather’s observation. Mrs. David
4
Dr. Solomon, your article “The Dignity of Disabled Lives” makes me tremble with excitement and joy. I was an advocate and Community Inclusion Coordinator for The Arc. I saw what you and far too few others have seen.
I now support high school kids who have severe disabilities. But for confidentiality, I would document in pictures both still and moving (very!) what I see every day. Glorious treasures! I am documenting this experience in my book, Embracing the Tiger.
So many stories. So much love.
8
I grew up with intellectually disabled folks. Their inclusive, joyful attitude and the absence of cutting irony has never left me. Today and every day I remember those days with enormous gratitude. And I hope that “we’re all in it together” and “we can have fun working together” attitudes permeate our culture.
29
We all seem to have our stories about disability either our own, friends or family members. We seem to forget that we are frail, mortal human beings, something we seem to ignore in our quest for eternal youth, freedom from disease or war against wrinkles. It was what the young Buddha saw when he escaped from his ivory tower. Seeing this reality was the beginning of his enlightenment and compassion for others.
As others have said here, we all have bodies and therefore struggles. Our spending on the military is meant to keep us safe, but can we ever really be safe? I guess what I am asking is where are our priorities? Are we more interested in easing the suffering of everyday people or feeding our military industrial complex and the insatiable appetite of the rich?
15
No, not all diversity is wonderful or desirable. That kind of thinking can have dangerous implications if you take it to its logical end. Why try to come up with preventive treatments if it's enriching and lovely to have all manner of disease and genetic abnormality? Why should insurance cover treatments? All treatment is based on the premise that it is better to be able and healthy than not.
It is essential that we never lose sight of the fact that being disabled is not good and that everyone deserves prevention and a cure, and that we must keep working toward those. I say this as someone who has a disability pursuant to multiple sclerosis. I don't walk around feeling too sorry for myself, but of course I would rather not have it.
Those who are disabled must be treated with dignity and respect, but it's taking things dangerously – and irrationally – far to celebrate disability as an inherent good for diversity's sake.
It is also unfortunate that Mr. Solomon sees himself as the sum total of various labels and thinks that without them, there would be little left of him. He even cited his Jewishness and gayness in the same context as his health conditions, as if these were somehow analogous. I know what he meant to say, but it simply doesn't make sense if you really think through it.
36
@Northstar5 Do you know the serenity prayer? To paraphrase, Lord, grant me the strength to change the things I can change, the courage to accept the things I can not change and the wisdom to know the difference. Each of us must find this balance between action and acceptance for ourselves and be honored in our attempt to find what is best for ourselves. It is not easy. Good luck to you.
15
@Northstar5
You say disabling conditions are “not good.” That kind of thinking precisely why we should celebrate the disabled.
The NY Times recently covered the marriage of a couple with Downs. That couple is perfectly happy. Yet you and a lot of other people seem to see them as an imposition.
5
You’ll notice there’s a theme (a specific word) that remains constant throughout the author’s telling of different disabilities and their varied challenges; isolation. As a parent of an intellectually disabled child I’ve found the ability (there is no other choice) to rise to all the challenges my daughter’s disability has brought. However, there is one exception: I feel so alone through it all. When I was married; we felt alone. Now divorced; I feel alone.
The issue isolation could be dealt with like all the other challenges. However, I believe isolation is more symbolic of THE CHALLENGE that truly haunts every parent of every disabled child; what happens when I’m gone? That is the ONE QUESTION every parent of every disabled person truly needs addressed.
55
@Facts Matter: It is presently addressed at the state level. Levels of support vary from state to state.
6
@Facts Matter,
I think your child's doctor, social worker, nurse, or guidance counselor, if she is in school, could put you in touch with a support group. Perhaps there is a local ARC chapter. As you say, this is an issue "every parent of every disabled person truly needs addressed." Other parents are struggling with the same problem. Forgive me if I've misread your question, but a supportive group might be an excellent starting point for finding your answers.
5
I had never heard of ARC. Just went to the website and it seems like a great place to find information and resources. Thank you
8
Thank you, Mr. Solomon. My son has an involved version of cerebral palsy. I am as surprised as anyone by all the ways he has taught me to appreciate life, including his. I truly do not know quite how to explain it, but he has shown me that the value of a person has almost nothing to do with what they are likely to achieve in the workplace and comes from some inherent quality. Goodness? Ability to give and receive love? I can’t define it, but it matters more.
I have been very concerned by national discussions—schooling, insurance, and especially immigration—that relate human rights to costs. As our immigration services are willing to deport hospital patients who are likely to die as a result, it isn’t a big step to accusing my born-in-the-USA son of being a drag on society. When .1% of us are “worth” more than so many of us, do we really want to tie basic human rights to finances?
32
Thanks for this article. One very small thing: The skeleton of King Richard III was unearthed earlier in this decade, examined and shown to exhibit scoliosis. Not a hunchback, but someone who made a life for 33 years while living with a surgically uncorrected disability. Brought up like his brothers and not hidden away, he was a military leader, a husband and father, and a reforming monarch. Not perfect by a long shot (see: Princes in the Tower), but not the emotionally stunted and thoroughly evil character of Shakespeare, either.
31
A lot can be understood about a society by the way it treats people it identifies as "different." We're not looking too great these days w a tendency to prey upon those classified so.
22
Mr. Solomon, I am always so grateful for your writing and grace. Thank you for this piece. May you and yours always be well.
11
Maybe the heartless and cruel are jealous of the simple joy that many disabled people possess which impossible for the avaricious to achieve.
9
I think Professor Solomon hits the nail on the head when he draws a parallel between the way that American society treats the disabled and the way in which it treats anyone who is perceived as "different" or an outsider, which in particular situations can mean people of color, immigrants, women, or religious minorities. It doesn't help to have a president who openly mocks and derogates members of all of these groups, including disabled people. Whether that is a cause or symptom of the problem, I don't know; probably both. The only response I know of is to treat this is as the political issue that it is and to work collectively to demand that members of these groups, including ourselves, be treated with respect and dignity and to drive that point home at the ballot box and in the courtroom when necessary.
14
That is true. However, most “other” groups have a distinct political advantage (which improves their odds for remedy) over disabled people: numbers. Perhaps with the growth in visibility of certain disabilities like autism we may see the political clout of the disabled increase. However, my guess is that specific disabilities (be it autism; or just getting old) will become more politically powerful, but not the disabled as a whole. Nobody necessarily wants to be a member of an “other” group. However, just about every one of the “other” groups (except for the disabled) has numbers. The numbers give them political leverage. Their political leverage gives them good reason for optimism because there’s a strong likelihood their grievances will be addressed.
2
I remembered happening upon the disability column in my on-lime wanderings of the Times. I have been reading it ever since; inspiring, thought provoking, brave. Thank you to all for sharing your stories and for this very special, humane article. Signed, a grateful reader!
9
This piece moved me; the concept of medical disbility put in the context of what we might currently construe as historical and political class of minority status ("disadvantaged", in terms of race, gender, sexuality, etc). The valueing of all types of people continues to be a struggle; none of us "prefer" disability; but there is no question it can engender empathy in ourselves (not mere sympathy) and if managed well can give permission to more intimate sharing and contribute to a larger community; we have made progress as a species, 2 steps forward and one step backwards at times; but the arc of history on where we need to go is crystal clear; the journey is not linear, but the destination has to be inexorable (e.g diversity in all its forms adds richness).
8
Thoughtful and thought provoking article. Thanks.
10
Everyone should be accepted for who they are instead of in comparison to others. No one has perfect genes - everyone has genetic variants that make them unique.
I had a patient with a severe developmental brain disorder, holoprosencephaly, that resulted in no cognitive function. He lived for two years in a sleep-like state and then died from a complication of his condition. In spite of never having had an opportunity to be like a typical child, this child had a profound lasting positive impact on his parents and everyone who knew him. I think of him and his parents who adored him often, especially when I am taking care of children who are disabled, as an example of how the briefest and most disabled existence can have great meaning and have a great positive impact on others.
Also, I take care of many children with Down syndrome. I have never been told by any of my patients with Down syndrome that they wish they were not born or did not have Down syndrome - not even during the midst of adolescence, a time when many of my patients without Down syndrome express unhappiness about the way they are. There are scientists currently trying to eliminate the live-birth of children with Down syndrome with increasingly accurate genetic screening in combination with discouraging post-testing counseling. These scientists probably dream of a world without Down syndrome. I would not want to live in such a world.
26
@AR, Pediatric Specialist
Then don't go to Iceland, where no one is permitted to be born with Down's.
2
I walked a narrow tightrope with my usually "hidden" disabilities.
As a child in early 60s I could have been institutionalized or possibly sterilized. Just managed to squeeze through Elementary school before Special Ed became a thing.
I have worked in that field and it is good, but I am so glad I was not trapped in that system--retrospectively, I easily could have been. And potential dx grow by the year.
And FYI, all kids suspected of autism should be in specialized preschool programs--many kids I saw improved tremendously and mainstreamed. Anyone who thinks they can definitively dx and make a prognosis at that age is blowing smoke.
It is too bad many states refuse to make this early investment.
10
Raise your hand if you immediately went to Google to look up "prosopagnosia".
Andrew Solomon strikes again. Far From the Tree is one of my all-time favorite books and I look forward to the new one.
13
After finishing the writer's book "The Noonday Demon",the most memorable line about surviving depression was having a sense of humor. Perhaps my depression is a disability. I vividly remember throwing up on the porch because of Lithium toxicity--when I needed to be studying for the MCAT. You're also right that anyone with a disability doesn't perseverate on being someone else. I'm at a disadvantage when I think about all my colleagues going into medical school while I didn't. It feels like an indictment on my grit,resilience,intelligence. But it was an act of self love. I knew how miserable I was;how my depression was worsened by the neuroticism and perfectionism that would intensify. While I wouldn't wish anybody to ever stare at entire bottle of Lithium and think about swallowing it,I don't hate myself anymore.
14
Depression can be considered a disability, yes.
5
A bottle of Lithium? Seriously? No physician would give lithium for reactive transient depression.
1
@Randeep Chauhan, much love to you. I hope you've found a career that treats you right. May your levels be ever therapeutic.
5
Andrew Solomon’s grandmother got it right, “Everybody’s got something.”
I was once a strong hiker of steep rocky trails in Idaho wildernesses. Approaching seventy, I caught “something,” though not even my wonderfully skilled rheumatologist could tell me how I “caught” it, an autoimmune disease with the Frankenstein like name of giant cell arteritis.
Now, with GCA in me, I can't walk a tenth of a mile. I am disabled.
I adapted. I often felt sorry for myself. My face would flare with anger. I dodged people. I didn’t want them to see me. I’d lost weight. My neck was thin and wrinkled. If they saw me, they’d take me for one of the walking dead, which I might well have been.
I took big doses of prednisone, a pill with serious side effects, violent irritability, insomnia. I was disabled and I didn’t want to be. I ate chard and beets for their supposedly artery healing powers. I burnt dried pieces of Montana sage, believing, as the Crows did, its smoke would heal me.
My GCA disability teaches me. I discover deeper forms of empathy, for the autistic man who works sweeping the floors at my gym, for the old lady who sits in a chair at an assisted living center screaming that she wants to die.
I try to believe my disabling disease is a friend. In a year, it taught me more about life than I’d learned in a lifetime of living. It made me more real. I learned that “everybody’s got something” and I must respect, even admire them, and, myself, for this something we’ve got.
62
My thinking about intellectual disabilities has been profoundly changed by Mr. Solomon's previous book, Far From the Tree, as well as a truly amazing television documentary series called "Born This Way" (available on streaming services). I highly, highly recommend both.
4
I have two disabling conditions. The primary disability is the stigma of being mildly Bipolar. The secondary condition is the mood disorder itself which doesn’t bother me much after successful treatment.
7
Societal recognition of mood disorders as a disability is certainly lagging behind recognition of more physically obvious disorders as a disability. Much work needs to be done in that area.
9
What a beautiful piece that hits every true note of justice and compassion -- that writes from the inside...out. I so value the absence of irony and cynicism that frequently appears on even the highest roads. You know so much but are not showing off, just serving the piece. And while you're in it, it's not about you...a feat that's become remarkable.
22
Well, every so often The New York Times delivers: This was lovely.
26
I am gradually loosing my hearing, and already in settings with high levels of ambient sound, like restaurants, I am unable to follow conversation.
Recently at a Costco free hearing test I road tested their budget hearing aid and was blown away at how much sound I was missing.
18
I have a tendency to view things in broad social terms and include under the heading disabled moral and spiritual disability. In some ways it is more troubling than physical or mental disability, something that is often obvious and relegated to a group by a special class of people who are seen as useless and not worth the social effort. The morally disabled do not even see their disability, their shortsighted lack of compassion. It is the same reasoning that says, I've got mine and everyone else is just superfluous. The physically disabled work had and confront their challenges. It is a valiant effort.
12
One of the best articles I have ever read. Beautiful.
29
My family has cousins in Toronto, who have a severely autistic son, now a young adult. He is essentially non-verbal, and cannot live independently. His parents are very middle-class people, "comfortable" but by no means well-to-do.
They have kept us informed regularly about their son, all the therapy he has received at home for more than twenty years, all the wonderful medical care and treatment, and even all expense paid trips to the Cleveland Clinic for more specialized care, thanks for the Canadian government (and taxpayers, of course). All this at virtually no cost to the family.
I cannot fathom what the family has gone through, emotionally, and I do not pretend to.
But I do know this: Had our cousins been here in America, they would have been bankrupted by now, even assuming they could have afforded a fraction of the care their son has gotten in Canada.
132
@Jackson Curtis Even if they have been spared the financial burden, the social isolation from other family members is extreme, and painful. I hope they have been spared that, too.
23
@MBS,
Yes, they have. We have a large, extended family in Toronto who are all very close, and so there is no social isolation for them.
23
As the parent of a young man with complex disabilities including autism, I can confirm that it has been emotionally, physically, socially and financially draining. Our society is not built to be supportive. While he was in school it was not so bad but now that he is an adult and we are aging it is very difficult.
91
Rather than being a limitation on my life, my disability has given me insights into myself and the world that I otherwise would not have. It has provided a knowledge that has made me a better professional as well as a person in community with others.
My disability isn't about me, really; it's about the failed perceptions of those regarding me as "different."
For in truth, we are all "disabled." Only community can restore us to wholeness.
34
This piece speaks to the even broader issue of the way human beings judge one another, establish hierarchies of worth, and ostracize and even shame those who fall outside the lines of the template. The best lesson any parent can teach is simple respect for the inherent worth of every human being.
61
The title says it all. Our society has destroyed our sense of community. The bedrock is one of selfishness and greed. The nuclear family is all that remains. Even that is frayed. Most readers do not know what the monthly SSI stipend is. Countless more do not know or care much that in most states it is almost impossible to provide care for those with developmental disabilities ( except in a isolated facility) in their homes and communities. There is actually a "waiting list" for a Medicaid "waiver." Even the language is offensive. I long ago reconciled myself that society did not consider my son to have any "value." Ask yourself this: Would you choose the risk to be born, if you knew that there would be no understanding that others would help you survive? I'd rather be a wolf in that scenario.
30
The values of a nation are reflected in how it spends its money. If you asked a majority of Americans, “Do you think the social acceptance of people with disabilities is important?” most would know to say yes. However, if you asked people whether they would be willing to pay higher taxes to support healthcare and social programs for disabled people, you might get a different answer. This side of the disability rights issue is stunningly absent from Solomon’s article.
Personally, I became disabled when a rare disease mostly stripped me of the ability to walk. The medication that allows me to walk (and work) costs $12,000 per month. Do I not deserve to have a job? To be alive?
Unless we, as a country, are willing to fight for economic policies that actually reduce healthcare inequality and give access to the neediest Americans— especially those with disabilities— all our talk of unity and universal values is just hot air.
87
@Michael W I (Claire's wife logged in as her) am in a similar situation. I have rheumatoid arthritis. I can walk, albeit slowly. I would not be able to live independently. Right now, we do what works for us. I work, she is home with the kids, and we have a wonderful family around us. The community is what makes it possible. I like to think that even if I were not able to work, my life would still have value to my community. When I was on meds that sapped my energy to the point where I could hardly walk, friends still came over and we would hang out while lounging on the couch.
Unfortunately, I am one of the lucky ones - I work in disability advocacy, and the number of people I see who are essentially abandoned by their families when they are no longer "conventionally useful" is astonishing and depressing.
Ableism overvalues independence and undervalues community. Likely tied into several other isms (class-ism, in particular). Everyone loses.
29
My 35 years spent finding jobs and homes for people labeled as "developmentally disabled" taught me one important life lesson - people are people are people............
29
Andrew Solomon expresses a number of thoughts about disability, nearly all of which are extremely valuable and worth fighting for to achieve a broader adoption in our society.
None of Mr. Solomon’s views is more important than his discussion of the position in society of persons with Down’s syndrome. Anyone who has had the opportunity to interact with young men and women with Down’s appreciates their contribution to enriching the lives of “normal” people. We also come closer to understanding the hard work of the parents in helping Down’s kids prepare for adult life and a degree of independence.
One thing which Mr. Solomon ought to avoid is lumping together, on the one hand, the murderous cruelty advocated by the Joseph Fletcher, possibly Peter Singer and obviously Adolph Hitler, with the more humane sterilization which Oliver Wendell Holmes approved. Today, most of us also reject Holmes, but it is sloppy thinking to equate all types of eugenics with genocide.
In order for the disabled to benefit from complete integration into society, and in order for society to become better for having the diversity which Mr. Solomon rightly recognizes, it takes funding.
Full funding usually is beyond the reach of parents of disabled kids, even with help from charity groups.We need to convince politicians that it is a moral duty of our government to provide that funding. In the era of Donald Trump, who seems incapable of empathy, that will not be an easy sell.
29
@sdw: No publicly-funded health plan can be economically viable without triage, and most people don't want to pay for other people's choices not to abort fetuses with serious congenital issues that will require costly support for life.
10
@Steve Bolger
The point you raise puts parents with a fetus having an in utero diagnosis of a developmental irregularity between a rock and a hard place. The anti-abortion crowd won’t permit an abortion and certainly not one with public funding. The parents have a right, in their eyes, to have the baby.
There is a wide range of lifelong health conditions in children, and expecting a perfect baby may be unrealistic. It is a situation which can only be solved by charitable funding or by the election of different state and federal officials who hold different views.
3
I disagree that Justice Holmes was promoting “a more humane sterilization.” The quote in the op-ed is from the decision Buck v. Bell. Carrie Buck was deemed “unfit” and the decision cleared the way for the state to sterilize her. She was actually of normal intelligence and was pregnant as the result of rape (not because she was promiscuous.) I think Justice Holmes was cruel.
7
Everyone interested in these issues should read Covering: The Hidden Assault on Our Civil Rights, by Kenji Yoshino. It's beautifully written and I've found it invaluable in terms of dealing with my own (hidden) disability.
https://www.amazon.com/Covering-Hidden-Assault-Civil-Rights/dp/0375760210
6
My son, Michael was diagnosed as autistic when he was 13 years old. I recall a conversation with my ex wife, Kathy after a particularly tough meeting where the “experts” listed all the things Michael would not be able to do or experience in his life. I remember being angry as I turned to her and said, “the sky is the limit for Michael”. She replied, “yes, but it will be his sky”. We let out the rope and he is now going to college, works his dream job at the San Diego Police Department and recently married the love of his life. He has found purpose in caring for dogs and bringing joy to everyone he encounters. You just never know.
102
It's easy to fall into a refrain of universal acceptance of all differences. And it's the correct and noble ideal. But the fact remains that the only way to overcome the stigma of non-normative difference is to recognize it, stare it down, and wrestle with it. Why do others' disabilities rattle us each? Because they reflect our own vulnerabilities. To approach the squeamish fact of the other's disability is to come to grips with our own mortality and suffering. This requires an honest, hard-nosed approach to life.
36
@Ps and Qs Yes. It is simply easier to avoid thinking about the issue. I was never much concerned about what my own children would be like until I volunteered with people who were non-verbal and low functioning, as it is called. I still have not come to terms with it.
5
It is called ABORTION. And there is absolutely nothing wrong with it.
2
As the CEO and President of Craig Hospital, a nationally renowned rehabilitation hospital for those who have endured traumatic/acquired spinal cord and brain injuries, I am encouraged by this piece, although the focus is more on those with congenital dis-abilities. Everyday, I get to witness the miracles of resilience, adaptation, recovery in many cases (although “cure” looks different among my patients) and the joy of celebrating the small things that we “able-bodied” people take for granted. The longer I live, the more important it becomes for me to spread the word that ALL of us want to see, and be seen by, each other. Not looked at. Not stared at. For sure not ignored. Truly seen and appreciated for the richness that is inherent in A Life, whether that life has apparent differently-abled-nesses (there’s a word) or those less seen but universal differences. Thank you for this piece. Here’s to the Warriors for the Vulnerable. In ways small and large, we all are.
55
This is a rather meandering op-ed. Becoming disabled is something that can happen to anyone, and at any time, in their lives because of accident or illness. I became disabled several years ago after a life-threatening illness severely restricted my ability to walk. Where I have experienced the greatest perception of being different is in the workplace. Being disabled doesn't fit the image of today's "move fast" or "hustle" work cultures. Also, in corporate environments, where conformity is expected, not being able to take part in office happy hours, or even just appearing different, means that you are indeed viewed differently. Unemployment rates among the disabled are 2x that of the rest of the population. If we want to talk about dignity, let's start in the office.
66
Our values are reflected in the way we spend our money.
We in the US value war - spending about 1/3 of our total federal budget on our Military Industrial Complex, including $700 Billion per on our euphemistically titled Department of "Defense", which is just the very large tip of the iceberg. Additional, non-DOD spending includes the military aspects of; DOE (nuclear), CIA, FBI, Homeland Security, Dept of State, NASA, VA, retiree pay, interest expense on Chickenhawk George's unfunded ME military misadventures - all told, about $1.3 Trillion (!!) per year.
Meanwhile, we short-change financial support for our young, and old, and disabled, and poor, citizens. We short-change spending on an endless list of deteriorating infrastructure needs. We short-change spending on educating our citizens and protecting the very air we breathe and the water we drink.
Shame on us.
104
But we actually spend around $4 trillion/year on entitlement programs, including social security, Medicare, and Medicaid.
I don't see the issue as one of the need to spend more on such programs, but rather one of finding a way to spend that money more efficiently so as to benefit the poor and the disabled.
I don't believe that spending $1.3 trillion/year on war and defense interferes with the $4 trillion we do spend on programs for the needy.
We obviously spend a lot on such programs, so the problem is in insuring that we use such funds efficiently.
10
@Sam. I couldn't disagree with your comment more. We do not need to "spend such funds efficiently." That has been one of the foundational problems in America for decades: the drive for efficiency.
This has included the privatization of things such as the Healthcare of America which should have NEVER been left to publicly-owned, for-profit insurance corporations.
Businesses are just as capable of inefficiency as the government and the drive for inefficiency has left America in ruins, in some cases literally.
52
The inefficiency of entitlements is in the bloat of bureaucrats hired to keep people away from the assistance. Nationalize healthcare and there are no "Medicaid frauds". Stop denying people Social Security Disability benefits at the current rate (denial rate and wait time). Time Magazine did a piece on those who die waiting. The system for accessing assistance is draconian and indecent.
48
It is expensive to be poor and severely disabled. I have had a severe disability for 60 years on my 65 year life and have used a wheelchair for 58 years, so I know the downside of disability from experience through generations of change that seems to not accomplish much.
I worked for many long years while never receiving a tax break because I was not seen by the Federal Gov as 'disabled.' But I am. I wanted a home and wife and a few of the things that any person wants, but all my spare money had to go toward care, from home care to lawn care and everything in between that the average able bodied person can do. And never forget how cruel society can be—it's gotten worse instead of better with recent generations. Figure that one out.
Finally, I see the Federal Gov supporting situations while leaving those of us with need out in the cold. It is time we have a discussion on priorities with the truly needy.
97
It is unfortunate that the ADA symbol for accessibility is a person in a wheelchair as it defines accessibility for people with disabilities as ramps. That, in turn, tends to define the concept of disability as only physical and ignores other forms. To say nothing of the hidden disabilities.
The concept behind Universal Design is that everything be accessible to everyone and yet there are fully abled people who are still denied access because of their sex, skin color, religion, etc. and the trend seems to allow me to deny access to people based on who they love. Miles to go and never sleep.
44
All human beings are differently abled.
No human beings are disabled.
All human beings have handicaps.
No human beings are handicapped.
There is only one biological DNA genetic evolutionary fit human race species that began in Africa 300, 000 years ago.
What we call race aka color is an evolutionary fit human pigmented response to varying levels of solar radiation at different altitudes and latitudes primarily related to producing Vitamin D and protecting genes from damaging mutations in ecologically isolated human populations over time and space.
What we call race aka ethnicity aka national origin is a malign socioeconomic political educational demographic historical white supremacist nationalist right-wing myth meant to legally and morally justify humanity denying black African American enslavement and separate and unequal black African American Jim Crow.
Rather than focusing on human minutiae as negative differentiation the unity and postive diversity of humanity would better serve our humble humane empathetic interests and values.
13
@Blackmamba
I like the overall message of your comments but race is not aka ethnicity aka national origin or even necessarily skin color. The Basques and Irish are different ethnicities yet they have the same skin color. The Basques also believe they are a distinct people different than Indo European cultures. Same with Celtic peoples vs Germanic. Also if society denied enslavement and Jim Crow there would not be affirmative action or diversity quotas in corporate culture.
6
@Blackmamba No. I am disabled. There are things that a typical (i.e. statistically average) person can do that I cannot, due to my body's limitations. A lot of that has to do with access and what society provides (for me, big things are adequate seating and transportation, as I am unable to walk quickly or for more than a few blocks without a walker, and a cane for shorter distances).
No-one has a handicap as "handicap" refers to the accommodation rather than the person. A handicapped bathroom stall or handicapped parking space that is for use by a disabled person.
Please don't try to speak for us without at least learning the very basics of disability theory vocabulary and why it's important.
17
@Blackmamba - Pretty words, but unless you've lived as a very disabled person, or the caregiver for one, whether adult or child and you can still say what you said, then your words don't fit the reality.
3
So people with disabilities (and the rest of us) need more community. That is a pretty safe conclusion Mr. Solomon. How about the more difficult questions such as selective abortion of fetuses with severe conditions, obligatory sterilization of people with certain psychological/cognitive disabilities, obligatory tests and interventions to prevent certain disabilities, and so on? I am not advocating for these, just suggesting that Mr. Solomon use his towering intellect to challenge us (as he usually does), rather than offer homilies.
11
@Elise
Those aren't difficult questions if you believe in reproductive rights. I respect a woman's right to terminate a pregnancy for whatever reason. I trust doctors to set ethical limits on when they are willing to provide abortion services. Abortion shouldn't be a political/social question put up to votes or determined by community standards. For the people who ask -- what does it say about our society that prospective parents might abort a pregnancy because the child would likely be disabled? It says nothing that hasn't already been said a hundred times over and at greater volume by our stingy safety net and widespread hostility to the vulnerable who already live among us.
Obligatory sterilization? No. Don't do it. See, simple answer.
Let individuals decide if they want to bring children into the world. As a society, we should do our best to care for the children who are born.
20
Calling more an increased community is indeed a challenge, as anyone with a child who ages out of the school community into the adult world will tell you.
16
I work with developmentally “disabled” (as they are commonly mis-labeled) adults. I wish people would lose that “disabled” description. Every one of these people are simply “differently” abled, some in amazing and unique ways that can make a real difference in our world. At the very least, working with one of these wonderful folks can and should inspire awe and compassion at what the human spirit is capable of. I feel so fortunate that I do what I do.
30
I constantly push my now-adult and non-verbal, “severely autistic” son to be part of the world. Inclusion in our local community has expanded in the two decades since my son’s birth. Because I am lucky enough to have graduated from a top college with the author, and received other degrees before and after my son’s birth, I have the time and resources to do so. That is despite being his only living parent.
Many, or most, parents lack the time and financial resources, and most have other family members who require resources (other children, or aging parents.) I know several families with three children each similarly disabled as my son, I and scratch my head in wonder.
What Federal legislation - IDEA (since the 1970s education for intellectual and developmental disabilities) and ADA (for physical and sensory disabilities) catalyzed for civil rights is truly amazing. However, by making it parents’ jobs to do the integrating, the systems favor those with resources of time, attention, money, and wits. Housing into later adulthood is our community’s final frontier; it’s not going to get easier.
I have now worked on IEPs as a professional and as a parent, and seen all sides. I have lived or worked in wealthy, impoverished, and working class school districts. The work of raising a child with more severe disabilities and advocacy still falls on the parents. So please don’t tell any of us hopeful cliches. “G-d only gives you only what you can handle.” I do wish that were so.
77
Dear Laura,
I hear you and I too see housing and employment for our adults as the next frontier. Whether implemented effectively or not in each school district, IDEA at least provides a framework for education. Post 21 is a whole different beast, which requires ongoing support after parents are no longer able to provide care -themselves or through paid workers. The availability of those workers, who are underpaid to begin with, is sorely limited and will diminish with recent, draconian, immigration prohibitions.
16
@Laura Weinberg important comment. parents who embrace and support their differently abled children are amazing, and so are the children that they nurture into re-framing expectations. but when those parents die or fall too ill to continue the work, there are no easy answers. right now i am watching as the young brother of a mentally challenged adult suddenly has to struggle with finding her housing and providing services that her parents provided (food, clothing, medical, transportation) for the things she cannot manage independently until they were into their 70s. one parent has died and the other is failing. where does that leave a non-independent 30 year old? the journey has a very long arc.
20
@Laura Weinberg
Your sentence at the end of your comment resonated deeply with me. My son has a genetic mutation that has caused a global developmental delay. He is an absolute joy, but in all honesty, requires a tremendous amount of work. My wife and I have people tell us all the time that God never gives us more than we can handle or that there is a special place in heaven for us. We also hear that God only gives special needs children to special parents. I understand that people have good intentions with these comments, but in my experience, they are hollow and have no significance.
19
As a disabled person I can attest that because of the gap in employment that resulted from my first and only termination and/or reluctant employers it has been impossible to get rehired in my fields of banking.
Lucky to have kind parents.
53
Thank you for this excellent piece. Exactly 8 years ago, I had a cervical spinal cord injury that left me initially paralyzed from the neck down: unable to move, feed myself, and without bowel or bladder function. The beginning was bleak, but I was lucky, my injury turned out to be "incomplete," and I did regain some function. Fast forward to now and I ambulate with a cane or forearm crutches, have been able to return to work as a pediatrician, and am immensely thankful for the life I have, a life that has many more layers of meaning than my first, even if I look and feel differently than I used to.
When I was first hospitalized, the hope that I received and craved and needed so desperately came from my nurses and therapists, and even from the janitorial staff; my doctors told me I would never walk again and that I would be lucky to feed myself. I chose to ignore the physicians and listen to my nurses. When I was a resident physician in training, one of my mentors said that a doctor should always leave some glimmer of hope for a patient and family, that they would never hold that against you. That lesson stuck with me, and came through loud and clear when I was injured and hospitalized. And, I think that that hope can provide the initial spark to establish a new way of looking at your life. Pain is a teachable event and can provide the means to live more meaningfully. We all will experience pain. The disabled have a jump start on the process.
93
Huge thank you for writing this and I am gratified that your journey included compassionate encouraging folk, especially nurses and therapists. Here’s to being the kinds of physicians who are there to stand by, offer hope and ALWAYS encouragement!
27
Sadly, the overwhelming majority of people suffering from severe mental or physical illness suffer a life of poverty and quiet desperation. Society is unwilling to provide a basic safety net that sufferers can at least "suffer well" in; a safe and secure environment. Their lives are made unlivable, unbearable and now unaffordable.
In a society that is adversarial, confrontational and highly competitive these people can barely survive- especially in cities like NYC. Air to a fortune- Andrew Solomon leaves out the most crucial point which is that now in the richest country in the world our prisons have become de facto controlled deprivation torture cells and to add injury to the suffering, those in need must have their pain and misery compounded by poverty and deprivation. They bounce from the streets to the secluded cages and back again.
42
@Gilbert Rosen: Phrase "quiet desperation" comes from Thoreau in his "Walden Pond,"when he wrote that we all lead lives of quiet desperation. Second,you don't know that severely handicapped have lives that r unbearable. Was Stephen Hawkins, brilliant British "scientifique"leading a leading a life of desperation, was his life pointless?"Je crois que non!" In 1991 was assigned by LS to interpret and accompany a disabled Algerian diplomat who had won a grant to visit the US, and we traveled everywhere, despite his disability. Even rode with me while in New Mexico to an Amerindian pueblo where he helped me to rescue a dog dying on its feet.We dropped the creature off at a local vet, who had to amputate 1 of its legs, injured presumably by a passing car while wandering about, had her flown to NY, thanks to help from vet and ESTRELLA remained with me for a dozen years until taps sounded. Daily News wrote it up in a story entitled "A Case of Puppy Love,"by Helen PETERSON.But back to main point. This was the year ADA, Act for Disabled Americans was passed,and our schedule included meetings with disabled patients in rehab units, including sponsor of the bill itself who was legless. Don't recall anyone feeling sorry for himself, herself.They had all something to live for.US does more for the disabled than any other nation! Second paragraph of ur comment is confusing. How do u get from discussing plight of the disabled to our penal system and to plight of the incarcerated?
5
@Alexander Harrison Picture a Stephen Hawkins minus the brilliance, fame, wealth and notoriety . Unfortunately there are plenty of people who are severely disabled (whether it is Schizophrenia or advanced MS) who are so incapacitated that they can barely function. Unable to work and support themselves and on SSI or SSD they live horrible lives and poverty makes things much worse.
"We all live quiet lives of desperation" ? Really then gain access to: https://www.omh.ny.gov/omhweb/psyckes_medicaid/about/
There will always be a small percentage of the population that is afflicted with some severe type of mental or physical illness and society has decided NOT to provide a place where they can live with dignity and at peace. Andrew Solomon is a wealthy individual and his dad is a multi-billionaire. When you don't have to worry about anything other than your illness, life can be much more bearable. I guess you also don't know that the US prison system is the largest consumer of psychotropic drugs.
5
What a beautiful article! My daughter is 12 and profoundly autistic, she has no verbal language skills, and needs help with all of her daily care. I wouldn't trade her for the world. She has taught me how to be a truly empathetic person. Thank you for this piece Mr. Solomon!
65
15 years ago when we were seeking help for our newly diagnosed severely autistic son, a doctor told me that I would get more joy from talking to a chair. My husband and I stopped at nothing to get help for our son, yes he is different and difficult but he is also warm, loving, kind and we adore him.
100
@anon
I am so sorry for that doctor's comment- what a dreadful, hurtful and malicious thing to say to you, and God bless you for doing everything you can for your son.
2
Community is the answer to the “problem” of difference. A good friend of mine was rendered a quadriplegic in an accident. He was a member of a religious order and was studying for the priesthood. His community of religious rallied and, extremely long story short, he was ordained a priest, served as teacher, counselor, coach for 30 years inspiring thousands of young students to lead better lives.
His church acknowledged his extraordinary life by sending him on the path to canonized sainthood. His community was his access, and ours, to his beautiful gifts.
I recollected Bill’s story when my transgender grandson readied himself to enter the new school year with a new name, haircut, sartorial style. His mom and some neighbors arranged a back to school picnic to ease his upcoming entry into class. Over 30 families showed up in full support, as classmates got familiar with their friend’s new name and gender expression. Mike Pence sent a letter of support.
These very different stories illustrate the power of community and attest to the author’s thesis. Community is love’s natural habitat. And, yes, I was kidding about Mike Pence.
131
@Victor /agree and your ‘Mike Pence’ put coffee all over my myself, monitor and keyboard. Goodness that made my morning.
For obvious reasons, I generally consider organized religion one of the most horrible of mankind’s creations. Any credible review of history will support this assessment, although arguably Nationalism may trump it. (sorry.) Nearly all of the worst people I have ever encountered in my worldly travels while younger and in my later life have identified strongly as “religious.”
That said, I occasionally run into what I consider ‘true Christians,’ (and others who identify as strongly religious) who are genuinely good, decent people who support the communities in which they live, who are patient, tolerant, courteous, and generous, who work to get along with others, help others. These people rekindle my faith in people, and some have become friends.
It is truly tragic that most, however, are like Vice President Pence. I don’t know how to change this though my involvement with some religious people, over time, turn them towards the good. They realize that we share many of the same deep values, that I am a person and that their (homophobia, racism, etc.) may require examination, reflection and change.
So, while I don’t have much faith in humanity, I do have faith in people if that makes any sense.
15
I forgot to mention that this morning, you @Victor have been a rekindler of that faith in people and a reminder that we are, in the end, only fallible humans, each and every one of us.
The only sane response to our insane world is to love and accept each other as much and as often as we can. And that includes me who will redouble my efforts in that regard due to your post this morning.
12
@SMcStormy I couldn’t resist the Mike Pence allusion. Glad you got a laugh out of it. Sorry about your keyboard
6
There are many injustices in the world. We need to minimize them. It’s done thru community and understanding and compassion.
At the same time I object to disability. I grew up with a deaf mom she wasn’t disabled she just couldn’t hear.
The people who made fun of her were disabled.
113
Thank you for this column; Mr Solomon is a deep thinker and writer and I love his books.
But this is a complicated issue. My sister, who is now 53, is mentally handicapped with a realistic age of about 3 or 4, and now legally blind. While she has unusual abilities, has often been a joy to my family, and as Mr Solomon says, has made us all more compassionate and aware of differences, she would absolutely be harmed by mainstreaming. She is not remotely able to live alone and has no judgement about other people; she would do whatever she was told to do. We have been lucky to have her live nearby at a religious facility with her own community, which includes friends of hers who have been with her since childhood. They go to sheltered workshops, out into the community on trips, out to dinner, etc. They are not hidden away. The state in which she lives is considering mainstreaming in such a way that it would remove financial supports for places like the one where my sister lives. That means this place would have to close. My parents are elderly, my other sister and myself live far away, and it would be devastating for my handicapped sister. Mainstreaming is not right for all members of this population; as Mr Solomon says, "Disabled lives are as valid as nondisabled lives, but they are not the same."
Mainstreaming would be devastating for my sister and my family.
167
There are disabilities that are unseen. Yes, people with "physical" disabilities can easily be discerned as having a disability. We have gone a long way to aid those people.
Deafness is a very serious disability. One cannot tell if one is deaf by looking at him/her unless that person is wearing a hearing aid (often overlooked) or is using sign language.
I cannot tell you how often my son has been pushed or worse because someone asked him to move and he didn't hear.
I cannot begin to tell you how hard it is to learn language and be educated when one is deaf.
I cannot tell you how difficult it is to get a job, much less a good paying job without being able to communicate well.
Helen Keller who lost both her senses in early childhood (she had the ability to see and hear before she became disabled. Later in life she made the wise observation that if she could have one of her disabilities returned she said without hesitation she would choose to have her hearing restored. She says deafness is the MOST disabling handicap.
And although there are laws requiring certain businesses (medical and entertainment) to provide translators, one needs to make an appointment two or more weeks in advance. And often the company when asked fails to make that appointment.
I am short and cannot reach the top shelves of grocery stores, it is NOT nearly as disabling as asking the grocery where something is because he doesn't have the language to ask.
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@esp
I have a good friend who is deaf. He was able to finish college and work as a teacher in a deaf program. He is an umpire for multiple sports. He is an incredibly talented home renovator who has done all of the carpentry, electric and plumbing work in his home. It is hard sometimes when he has to ask someone who does not sign for help. He often uses a cell phone to text the question, and is quite able to read lips and figure out responses. He is an amazing person. I hope your son finds the help he needs. I also hope more schools offer sign language as a language option. It is wonderful for a deaf person to meet someone who can sign even a little. That is a community that we all can be a part of.
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I am deaf and work as a professional counselor with deaf and hard of hearing people. Communication barriers can be a struggle, however, for something as simple as asking where something is in a food store, a deaf person can write on a piece of paper or type on their cell phone what they need to know. There are alternative ways to communicate. I take issue with the impression that deaf people don’t have the capacity to handle something as simple as that, never mind anything more complex. For deaf people, the issue is about having full access to information, an appropriate education, and a means for mastering the English language. When parents and teachers of the deaf do not have the skills to fully communicate with deaf children so as to impart the knowledge, education and skills every child needs to have, this is what creates major barriers for deaf people. Helen Keller was a well-educated woman, and she was able to accomplish this with the help of sign language and a skilled teacher. In other words, being deaf per se does not create these kinds of barriers. We have the same inherent abilities as people who are not deaf to succeed personally and professionally, provided that we are given the means to do so. And, as Dr. Solomon states, “...presuming the worst often results in the worst results; low expectations can be a self-fulfilling prophecy.” Seek out the advice of deaf adults if you would like to know how deaf children grow up to become successful individuals.
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@LFRyan
First I would ask how old they are. Things have gotten better.
Second I would say, you both are the fortunate ones. And you are both working for deaf communities.
Most deaf people do not go to college and usually have poor jobs.
And yes, when my son was in school a (one and only one) successful person came and talked with the parents. Unrealistic hope. None of the kids in his age group have good paying jobs. None.
And Ryan, you live in Boston. Check out rural areas.
My son is in his fifties and his friends and him still gets pushed around when someone asks him to do something when his back is turned.
And yes, you are correct you have the same inherent abilities but many sadly are unable to fully achieve their potential.
Helen Keller was an exceptional person. It is not fair to compare others to her.
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"How we frame disability determines how we live it, and if it is defined as calamitous from the start, the job of finding meaning is steeper than it need be." This sentence captures so much of the ableism in our society. In higher education, where talk of diversity and inclusive excellence is common place, this deep ableism is still found: disabled students are reduced to accommodations provided by the ADA, and barely tolerated by the professorate, rather than viewed as valuable members of the student body who contribute in important and critical ways to the social and intellectual worlds college students are meant to explore.
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@Hillary Haldane
Thank you for your post. You are unfortunately correct about the attitudes toward people with disabilities in colleges and universities. Some of the comments and opinions about disabled students that I have heard from professors about students in their classes who need accommodations have been some of the most biased and debasing language imaginable. People who would never think to use derogatory language about other minority groups feel perfectly comfortable dehumanizing people with disabilities. The concept that people with disabilities add to the community of a college by virtue of their life experience and ability to see the socially-constructed world of ableism is often ignored by those in a particular position to expand the worldview of the entire university community. We have a long way to go, and I applaud Professor Solomon for his eloquent writing and his work.
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