13 February 2013

My heart breaks for your child.

Trigger warning: Brief homophobic/heterosexist quote, and extensive quotes and descriptions of ableist and eugenicist rhetoric.

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"I don't want a handicapped child."

I read that line in a mother's story of her disabled child's birth and first few weeks, and it gave me that awful, wrenching feeling--you know, the one where your insides kind of shrivel up and your breath catches somewhere in the back of your throat, hinging on tears or gasps or other sounds of enervated shock.

It's easy to be angry.

After a while, you stop being angry. You stop feeling indignant rage whenever people say oppressive bullshit and you start to just feel tired. It's an aching, gnawing weariness that sort of nestles in your bones and grows deep roots around your heart, squeezing and holding it captive in their entangled curtain.

So when you read one frightened parent's outburst -- "I don't want a handicapped child." -- you just feel all the energy drain out of your body. Your shoulders droop, you forget whatever rules you once memorized about posture, and you want to crumple in your seat or against the wall, wherever you are right now.

I'm reminded that I'm one of those children who wasn't supposed to be born.

I'm one of those children new parents are afraid to have.

That's not a reality that I like to think about much. Who would?

"I don't want a handicapped child."

I'm pretty sure that's what's meant when parents say, "I wish my child could be normal!" if you really get down to it.

It reminds me of the same kind of feeling I got when Judi Dench, playing J. Edgar Hoover's mother, said, "I'd rather have a dead son than a daffodil for a son," in J. Edgar (2011).

So is being disabled the same as being dead? Or is it, as Jim Sinclair put it, that

 Therefore, when parents say,

    I wish my child did not have autism,

what they're really saying is,

    I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.

Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.

"But don't you think those parents would want their [intellectually and developmentally disabled] daughter to be normal? Don't you think they'd give anything for her to be normal again?"

The sad fact is that if they're like most parents, they would pay almost any price for their daughter to look, speak, act, and think "normal."

We are not wanted, not as we are.

Though human existence is fraught with frailty, it is our debilities that become stigma -- visible marks of our deficiency, of our defect, of our worthlessness.

It's not so much that my voice doesn't matter as much as the voices of those who clamor that people like me shouldn't exist, that people like me are a burden on society and a devastating medical mystery destroying families, that murdering people like me is an act of mercy to spare us from suffering to live...

In these conversations, which pervade public discourse and dominant rhetorical constructions of disability and disabled bodies and minds, my voice doesn't exist.

How can victims speak?

When you say "I don't want a handicapped child!" what you really mean is not that you want us to live lives that are meaningful and happy for us as we are, but for us to disappear, replaced by perfect, recovered, cured people who were once broken and who now have been healed.

I am happy with the way that I am, and my happiness should never, never be considered lesser than that of someone whose physicality and mentality have been centered as normative and ideal at the expense of those of us whose bodies and minds have been disabled and marginalized.

When you say "I don't want a handicapped child!" what you really mean is that you are incapable of loving and accepting us as we are for all of who we are, and can only conceive of love as belonging to idealized children with brains and bodies that fit constructed notions of normal and healthy.

I want to be loved, along with all my frailties and debilities, not in spite of them or in the futile hopes they will one day disappear so I can earn the favor of the able-bodied and neurotypical.

When you say "I don't want a handicapped child!" I don't feel sympathy toward you, but my heart breaks for your child who will grow up with the constant message that people whose bodies and minds diverge from typical don't deserve to live.

I have been that child, conditioned to believe that the only appropriate response to disabled people is pity for the tragedies that have rendered them confined to lesser bodies and minds, rather than outrage at the systems that have institutionalized and industrialized ableism against them.

I know, I know. I should be grateful that I can type this. I should be grateful that I wasn't aborted, that I'm fortunate enough to breathe the same air as people more worthy of life than me, that I wasn't locked in an institution.

I've been told all my life I should be grateful that I'm allowed to exist.

"Your dreams will be reduced down to breathing. And you will be grateful."

I've been told all my life that I am the problem.

"If you work hard enough, maybe no one will know."

The answer is always to put us away or force us to stop communicating and moving naturally, not to stop attitudes that allow abuse and bullying and violence.

"At least he never hit you."

Violence enacted on disabled bodies is never violence, never abuse.

I know.

It's for our own good. It's so we can learn to behave, so we can become disciplined, so we can get better. So "strangers you can love will move in behind our faces."

I tried to forget.

This knowledge that I'm one of the children whose births are dreaded and met with regret rather than joyous anxiety? I tried to bury it away and let it turn, however slowly, into a scar.

Then you said, "I don't want a handicapped child." 

And I remember now.

How could I let myself forget?


45 comments:

  1. Thank you so much for writing this blog. It has gotten me through so many difficult times. I'm a girl with mental and psychiatric disabilities and I've often heard from family members that they wish that I was not depressed or anxious. I understand everything that you've written here and respect your opinion, but I know that if I had the option to not be depressed or anxious that I would pick it, only speaking for myself. Maybe this is a reflection of ableist views from the community that I grew up in, that I'm not whole, or well-made, that have become my own views about myself. I agree that I would not be the person that I am today without these disabilities, but I also have suffered greatly because of my disabilities and the social stigma surrounding them. I know that in many of the examples that you used in this article were based in misunderstanding (to say politely), but I think that these comments, particularly after knowing the person intimately and knowing about their struggle (again only speaking from my experience) can encourage people to say this as an external reflection of internal desired from the person (me) to change, until they accept that they are not what needs to change, but the society around them.
    Sorry for the ramble and thank you once again for posting such wonderful things.

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    1. As a disabled person myself, I do have disabilities or aspects thereof which I wish I didn't, but I find that those aspects, or the reason that I wish that I didn't have them, are different from those that other people would change and their reasons. For instance, whereas my biggest issue with having a cleft lip and palate are the chronic ear infections that are associated with having the condition, and I wish I could make them stop, a lot of people are fixated on the fact that my face looks different, which I have no problem with and don't want to change.

      I think it's perfectly fine for an individual person to want to change themselves in whatever ways and for whatever reasons, and that should not be stigmatized. The thing is, we shouldn't have to. What's not fine is that there's any stigma attached to being disabled to begin with, as the stigma serves no purpose and can be changed a lot easier on an individual level than a disability can be. And when other, nondisabled people conflate their own discomfort based in this stigma, or that of other able-bodied people such as my parents, with mine - such as by assuming I must be unhappy, unhealthy or suffering because other people are uncomfortable with me or wish that I wasn't what I am - that's not fine either, and does a lot of harm. I hope this makes sense in response to your comment.

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    2. I feel like you tried to be polite, but I've never felt more patronised.

      I think it may be you who misunderstands very deeply. Depression and Anxiety are not rooted in your genes (90% of the time). Autism is literally the form your brain takes. They also define yourself far less than Autism and are purely negative. Being a male or British pales miserably to being a proud Autistic and I flourish from the advantages Autism gives me.

      To hear a woman want to get rid of their child's Autism is basically them saying they want to be rid of their child. And to decide to despoil my soul just because of a stigma surrounding Autism would be an act of utter spinelessness on my part.

      Fortunately being Autistic doesn't make you anxious or depressed so that issue is a moot point.

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    3. Because of the way society treats Autistic people, we face a lot of ableism about our neurology. This often leads to anxiety and depression. I feel like my experiences with those issues help me empathize with others who are facing them, Autistic or not.

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    4. Anonymous #2, I've never felt more patronised!

      Depression and anxiety are MOST DEFINITELY rooted in a person's genes! I have childhood-onset OCD, and that is the form my brain takes. Even before the onset of symptoms at age 7, I knew I was "different". I assure you, it's integral to who I am.

      I'm surprised you would use this space to negate the experiences of mentally ill people.

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  2. Thank you for your honesty, for writing the words I cannot write, for speaking a truth that I share.

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  3. Thanks for your post. As the parent of an awesome, totally amazing autistic 9yo, I know where you are coming from. I fear that my son will some day hear a version of this comment -- not from me, but from friends or family members who are struggling to grasp whether I really am "okay" with his ASD and ADHD, because they can't imagine that I ever could be not only okay with it, but also embrace how that neurological wiring makes him who he is. I want my son to find happiness and self-fulfillment in his life not in spite of his autism, but in a way that honors that part of his being. When I compare him to other kids, I find that I'm proud of the quirks that make him so unique. I'm in awe of the depth and persistence of his passion for music -- already I have learned so much more about this topic than I ever knew and my life has been enriched in the process. I have also had to work a little harder to get to know my son, what makes him tick, what he loves or fears or couldn't care less about. But I don't begrudge autism for making this aspect of parenting different for us; if anything, I am grateful that autism taught me to slow down and listen carefully to all of the ways that my son communicates rather than relying exclusively on pragmatic language (his weakness and the NT world's go-to expression). I don't want to sound like a Pollyanna who doesn't recognize the ways that autism creates specific challenges for my son and specific challenges for me as a parent. But I want you to hear clearly from at least one parent that there are those of us out here -- in many ways thanks to the self-expression of autistics like yourself -- who embrace the autism. And we will do whatever we can to help our children understand that they aren't amazing, wonderful individuals "in spite" of autism. They are simply amazing, wonderful individuals. Full Stop.

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    1. And, as a parent of another beautiful, wonderful, autistic child, let me please wholeheartedly agree with you. We -both my husband and I- love our son just the way he is. We would not want to change a single thing about him. He is perfect for us as he is. It is not easy to parent an autistic child, as you can feel ostracised by other parents, or by family and friends who refuse to believe you are OK, that you would not want to change a hair of him to make him more "normal". "Normal" does not exist. And we do not want to "cure" him. We are just working hard to learn to communicate with him, and to help him communicate with the world around him. So that he can be happy, so that he can have a fulfilling life. We know it won't be easy. But we have faith in him.

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  4. There was a letter on the board at work from someone who had worked there a few years earlier. He and his wife were unable to have kids, so they had gone to Russia to adopt.

    The letter was full of outrage at how the orphanage had tried to 'palm them off with one disabled child after another'. They would take the child back to the hotel where they were staying, and after a few days realise there was something 'wrong' with it, and so take it back and demand a different one. That it took several days to notice a disability probably says that it wasn't anything requiring a lot of arduous care.

    But, !happy ending!, they eventually got a child that wasn't broken and adopted it.

    There was no consideration by them - or any of the other people reading the latter at work - that this might be a problematic, or downright disgusting, attitude.

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  5. After reading this post I couldn't just stop myself from writing this comment - I just have to say what I mean.

    I apologize in advance if I sound too strict, impolite or offensive, but I hadn't read anything this one-sided about disabilities for quite a while. I mean no disrespect to the author, but it just doesn't make sense how a well-educated, smart person like the author, can only focus on one very thin theme. Maybe it is because you have generalized it to "handicapped child" where you should have written "autistic" or even specified the condition. I don't know. I hope so.

    I am a female in mid-twenties, now the eldest child in a large family in Eastern Europe (not that it has any influence in this case - only my English). I had a sister - she was 2 years older and died several years ago at the age of 21. She was disabled since she was 3 - so throughout all my conscious life I had a seriously handicapped sister. She couldn't walk, she couldn't talk. She had a mind of a three year old.

    I am truly sorry if you have experienced lack of love or something like that, but my sister was truly loved. And guess what - my Mom and Dad and all of her siblings including me loved her and wanted to have her with us as she was.

    But there are 2 major aspects that you have - consciously or not - excluded from the otherwise emotionally very full article. First of all - about, I quote, "I wish my child could be normal!" Have you ever considered that people around disabled people want the disabled ones to be "normal" because they want their happiness? I mean why do people bother to struggle to get their walking ability back? Why do kids ask questions when they see they are different - cannot see or hear? It is not just because of the social pressure. It is because they know they are different. And the fact that you have grown up, matured and are happy now doesn't mean parents shouldn't wish for their children to be happy and the same as others. Because it is a difference, you want it or not.

    When I was a kid, my friends used to come over and look weirdly at my sister, but I was always proud, I always loved her and always explained the difference and the situation. But I ALWAYS wanted to live a life, to be able to walk, to be able to speak. To be able to feed herself. And not for me - for her.

    Another aspect you have forgotten to think about - regarding "I don't want a handicapped child". I have no idea if you have or are planning to have children yourself, but have you seriously ever heard anyone - including yourself - say: "I want a handicapped child"? Every single woman (and man) want to have their children to be healthy. And speaking of your thesis that this phrase means they don't want you as a child but want someone else - this is a complete, utter bullshit, I am sorry for using the same language you are. Parents, including mine, wanted their daughter, the same daughter to be healthy, to be able to live a full live. You know why - exactly because they love their child. And don't even try to tell me that lacking the ability to walk, speak, see or hear is a full life.

    I have only touched the tip of the iceberg here, I could go on and one, but I had to say these 2 major things. And if you write an artile, you should at least try to look at things from different perspectives - this applies not only to the author, but also to the readers and people who comment. It is not the disability that makes you weak - it is your position as a victim.

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    1. Wow, all I can say is wow. Could you be more blind? I hope you had a clear understanding of what a disability is and how it fits in with Autism.

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    2. I'm going to attempt to respond in kind. As a non-autistic parent of an autistic child, I can say with great authority that my child is happy and healthy. Wishing his disability away would be for "my sake" - never his. He accepts who he is and actually feels he is better off than his neurotypical peers. I could never, ever, presume that I know he'd be happier if he wasn't autistic.

      We cannot, as outsiders looking in, ever presume to know what makes "others" happy. We can only know what "we" want for "ourselves." We are privileged and cannot get outside the realm of what we know inside ourselves.

      Abelism is something society has scalded into our belief systems and it's running rampant in your comments. Look at the decrepit thinness of fashion models, the steroid muscles of athletes, and the hoops we jump through to be "beautiful" based on whatever social norm exists today. This not only hurts non disabled people by making us "less than," it significantly makes those with more pronounced differences, ostracized. Perfection doesn't exist and there is no normal.

      The issues you point to (how children looked at your sister in a strange way, for example) are issues of your own comfort. Not your sisters. You can only guess what she felt.

      Saying that not being able to speak, walk, see or hear is not a "full life" is your perception and it's misguided. You cannot presume anyone else feels this way just because you do.

      There are many resources available to better understand why your comments are abelism. I hope you will take some time to read more about the matter. Because inevitably, how the public responds to the disabled population either helps or hurts them. And in this case, your message is hurtful.

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    3. Briefly:
      You wrote "Have you ever considered that people around disabled people want the disabled ones to be "normal" because they want their happiness?"

      That's part of the point. There is an assumption that if one is not "normal" that one cannot be truly happy. The assumption is both false and problematic --> it contributes to potential unhappiness by virtue of assertion to the child that there is an expectation of unhappiness/dissatisfaction with life.

      You also wrote "And don't even try to tell me that lacking the ability to walk, speak, see or hear is a full life."

      Imagine being told that because your hearing is imperfect, because you don't have perfect pitch, that you cannot have a full life. Imagine being told that because you run so slowly, cannot jump so high, cannot swim so fast, that you cannot have a full life. 'Oh, you don't have children? You will never know what it is to truly live as a woman, then.'

      People have been defining for others what their "full lives" ought to look like. You talked at the end about looking at things from different perspectives, while spending most of your entry insisting that the author's perspective *must* be wrong and yours universally correct.

      While my own perspective is sometimes different from the author's, I am quite confident that my life is full without a need to tell somebody else that theirs is not.

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    4. To the first responder to this post: I'm not sure "could you be more blind" is the right way to respond to an ableist comment! I'd probably phrase it more as "could you be that ignorant" or "how could you miss the obvious point?"

      That said, yes, the "we want them normal so they have a good life" thing is garbage - so I suspect we generally agree..

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    5. OK, either my writing skills are much more poor than I though they were or you are also (if we presume I did as well) missing the point!

      I will answer to all the points worth answering written above together.

      What I want to start with - do you really think there is no "normal"? Do you disagree that a normal person is one without disabilities, without allergies, without some kind of [physica] fault? There are medical norms for health. And that is the whole point why there are classifications of disabilities. What's your offer then? Just dismissing them and assuming everyone is good as they are, shouldn't get help, don't need help etc? And don't only read the word "help", those were examples. If I understand correctly, you offer to completely dismiss the words "disabled, handicapped" etc?

      Comparing models to handicapped people is just foolish to put it mildly. And speaking of which - obesity is the problem, not being slim.

      I was thinking about the word "abelism" and concluded there is no such word in my mother language at all. And this is definitely the other part of the problem - f*cked up society which apparently it is.

      Speaking of my sister, I didn't have problem with my friends or classmates or whoever visited. It wasn't uncomfortable. So that is of no relevance.

      And are you kidding me?! If you had a chance of giving your child the possibility to get cured from autism (if that was possible), would you really say no? Just take a moment and think about it. Or if your child was blind or deaf. Would you really say no?

      To conclude - how come no one commented on my question of having heard anyone say "I want a handicapped child"? Have you?

      Having had a disabled sister I do believe I have the right to say I know what it is like. And if you say that her life was better for her (and anyone else for that matter) - 17 years living with a 3yo's mind - then you clearly have no idea what you are talking about.

      Again about the assumption about happiness - I didn't say handicapped (in any way) people are not happy. They can and are very happy. But do you really think they themselves wouldn't jump at the opportunity to be cured of whatever disability they have? No one has yet answered this question as well!

      And about speaking from my perspective - this is exactly what argument is. Have you ever seen people arguing and giving points to certify the opponent's ideas? And more importantly - this this and the previous ones are counter arguments in comments to a one-sided article/post in blog not and article itself.

      I didn't write this or the first comment to make myself feel better or whatever, but to maybe open the eyes of people who read the article and don't think more about the subject.

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    6. Ah, it seems the Anonymous poster only read the tan posts and did not read the one below. How unfortunate. Please read it. Why are you being anonymous, poster? To address the issue you say you are stuck on: I have indeed heard people say that they wanted to have Deaf and/or Autistic children, yes I have, which is relevant primarily because I do not know anyone personally who uses the offensive term "handicapped;" but I will give you the benefit of the doubt as having this be a translation issue.

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    7. "Have you ever considered that people around disabled people want the disabled ones to be "normal" because they want their happiness? I mean why do people bother to struggle to get their walking ability back?"

      "Again about the assumption about happiness - I didn't say handicapped (in any way) people are not happy. They can and are very happy. But do you really think they themselves wouldn't jump at the opportunity to be cured of whatever disability they have? No one has yet answered this question as well!"

      As a disabled person with SEVERAL disabilities, including a disability that affects my mobility, I can confidently say that I am happy the way I am. If a cure was offered to me, I would turn it down flat, because my disability is as much a part of me as being a woman is a part of me. It is a part of my identity. To be anyone else would be foreign to me.

      You speak as though there are no disabled people here, using "they" and speaking about "handicapped people" as if we are having this conversation without the very people discussed. Lydia is out and proud disabled, as the title of this blog clearly indicates. Many of the commenters who responded to you, myself included, are also included. And we are happy the way we are. If our families want us to be happy, they shouldn't want to cure us. They should be fighting alongside us for accommodations, community living, transportation, employment, and all the other opportunities that typical people in our society take for granted.

      To conclude - how come no one commented on my question of having heard anyone say "I want a handicapped child"? Have you?

      I'm stepping up (crutching up? rolling up?) and answering this, because I'm not afraid to say it. YES, I want a disabled child. I want a child who moves like me, a child who knows that his/her/[insert gender neutral pronoun here] family loves her for exactly the way she is while other families may not have loved her like that. A child who can find a role model in her own mother, something disabled people very rarely have, since most disabilities are not genetic. A child who will grow up learning to love herself for exactly the way she is, nothing more and nothing less. It doesn't mean I would love a nondisabled child any less - when I have children, I will rejoice no matter what they look like, what they sound like, what they think like and what they move like. But I would love to raise a child like me, an atypical child who will grow up in an environment that embraces atypical ways of going about in the world.

      As a disabled person, I know what it's like to BE a disabled person, which is a perspective typical siblings and parents don't, and may never have. You don't have to put words in mouth and say that you want me to be happy - because I AM happy. I am disabled, and I am PROUD. I don't need to be cured. All I ask is that my family and society respect MY choices, MY individuality, MY autonomy. I'm not a problem - society is. I'm not broken - I don't need to be fixed.

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    8. Why am I being anonymous? What would a name give you? As far as the other "autentifications" - I am not a registered blogger. And to reply to what you said - that is horrifying. I would really be interested to reading what you have to say on the reasons anyone would say. Not only because I disagree, but to have a discussion I'd need to hear the reasons I cannot think of. And yes, that is a translation problem, I did not know the word "handicapped" was offensive, especially since the author of the article used it so often - I assumed disabled=handicapped.

      As far as the comment below - I do understand what is meant with the lion and language comparison. But I have to disagree with that. I can compare (quite barbaric)this with different cultures - I do believe people in, let's say, African tribes should have their own culture, their own way of life. But the point is - they are secluded from the Western culture that often tries to make them adapt to this way of life. Disabled people are not secluded - they live here, with us,they are the same people, they think the same, they act the same, they feel the same. And for someone to deliberately wish to take that away from them is barbaric! (I am now refering to someone actually wanting their child to be disabled) The actual problem here as I have apparently failed to explain, is not the disability itself - it is knowing they are different! And the disabled do! For example, the law in my country states that blind children should be able to study (provided the materials etc) in a regural school, but they get bullied for being different and the schools do not actually provide everything. And of course I am not saying everyone shouldn't be educated that diiferences are not normal, they should, but the situation is as it is. Ok, I don't think I can arrange my thoughts in a clearer manner, I hope that at least some of you understand what I am trying to say. There are various and many reasons to want your child to be the same as others at least in terms of health.

      I don't think they live a lesser life. But they would live a fuller one if given a chance - not a completely different one (referring to post below: "I cannot imagine what I would be like if I were not myself").

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    9. Ok, I don't think I have anything else to add. I will check this from time to time, but for now - I have read everything I needed to confirm my position. "Spaz girl", I am very sorry for your future children. I hope they have excellent health so that you would understand this other part - non disabled - of people better. I do not mean this in any rude way. It just saddens me to hear someone actually would want their child to go through what you have gone through. Good luck and... being overly cynical and sarcastic, I almost wrote "stay disabled", I am sorry. Good luck!

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    10. First of all: In most cases, disability isn't curable. So you're arguing about things that aren't an issue.

      Second, I hope my future children, if any, are boys. Boys can make more money, so they have less risk of poverty. They can't get pregnant by accident, so they won't have to go through that. They don't spend 9 months disabled if they do get pregnant. I could name plenty of other disadvantages women have. These things mean that boys have better lives than girls. I don't want my children to suffer.

      Of course that above paragraph is hogwash. It just so happens that being pregnant and disabled in that way doesn't carry the same stigma as being blind and women have won many rights (that said, I recognize society has a ways to go - a long ways). Nobody in my country has pity because a child is female or a parent has a female child.

      And, finally, for someone saying we don't have empathy, your sarcasm defeats your argument.

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    11. Anonymous at 10:12 said:
      "Have you ever considered that people around disabled people want the disabled ones to be "normal" because they want their happiness?"

      This is the system that our society has created and implemented: we defined a certain kind of neurology (body, skin color, and sexual orientation) as "normal" and anything else is "less than." We believe only those who are "normal" are good, smart, capable, and happy. We send specific messages to those who are not normal that they are not good, smart, capable, and happy. We pretend we are the beneficial ones who will take care of them and ensure their happiness.

      Your sentence is the perfect example of privilege. How can we tell? Instead of "disabled people," insert any other kind of characteristic that is seen as less-than. People around gay people want them to be normal so they'll be happy. People around black people want them to be normal so they'll be happy.

      The system of seeing disabled people as "less-than" is deep, entrenched, and absorbed by us all. Let's change it.

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    12. Happiness or life value cannot be measured by any singular expectation of what a person can our should do with that life. I would be "happy" only to sit in a room and listen to music and write poetry.

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    13. "but have you seriously ever heard anyone - including yourself - say: "I want a handicapped child"?"

      Yes. People who have adopted or fostered disabled children.

      My disabled child is wanted. I wanted a child. I got a child. I fought hard to have this child. None of that changed when we realized this child is disabled.

      This is part of the dialogue that needs to change. When a parent accepts the responsibility of having a child, that commitment is to the real world child you get, not to some hoped for image.

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    14. 1) To speak on the subject "a child with disability" being wanted, there are actually many people in this world who want a specific child. Those who want children who look just like them. Many babies get adopted based on criteria of how much the child might potentially have similiar physical characteristics. 2) And then of course, there are many children who get loved no matter what and many parents who fall in love with a different-seeming baby. An example is a parent who knowingly and willingly adopts a baby from a different country with nothing but love and excitement in the heart.

      1) There are many deaf individuals, couples, and generations of families who actively hope that the newest member of their family (biological or not) will turn out to be deaf, like them. And if not deaf, the baby turns out to be "normal" - there is actually a special label for that - Child Of Deaf Adults (CODA), because being "normal" is SO different whereas being deaf is considered normal. The deaf community has allies in the disability world who feel very much the same way about having "normal" babies. A child with disability, which may be percieved by the world as a sad thing, is "normal" to the family. This list includes Autistic, Little People, Blind people, and so on - I cannot actually list all the ally communities because the list is so vast.

      2) Of course, there are surprises. Everywhere, there are real life instances where families adopt a child with a disability unknowingly or they have a biological child who has a disability. They didn't choose this scenario. They didn't plan on this. But the world is full of people - parents and siblings and family members who care so much about the person with disability and gain so much themselves. Having a disability in the family is almost like an unexpected gift to them, I've heard many family members use some sort variation of this concept - "disability as an unexpected gift". They wouldn't wish anything else in lieu of having a person with disability in their family because they truly value the person and the disability as a whole and accept this as a part of the human experience.

      "I wouldn't want a handicapped child" - this sentence speaks volumes because it is hurtful, offensive, and contributes to eugenicist perspectives where the ideal is the "perfect child". Who truly is perfect? No one, but the ideal is far more harmful than you may think.

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    15. "Have you ever considered that people around disabled people want the disabled ones to be "normal" because they want their happiness?"

      Yes, that's what they think they want, but it is a serious effing problem that society so unquestioningly equates normality with happiness.

      That so many people can't imagine that disability or non-normality, and happiness, could even co-exist, so they see no reason to build a society that would even begin to see why it should ALLOW them to...

      This is a big, big problem for disabled people. This impedes our abilities to be happy, in many cases, far more than the actual disability does.

      Much to the chagrin of doctors who long thought otherwise, surveys have actually shown that long-term disabled people have similar levels of life satisfaction as non-disabled people. So, you know, I don't really believe that it's for our happiness that you're actually mourning.

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    16. Also:

      "I have no idea if you have or are planning to have children yourself, but have you seriously ever heard anyone - including yourself - say: "I want a handicapped child"? Every single woman (and man) want to have their children to be healthy."

      I don't think I have any right to say that I want or don't want a disabled child (or that I want or don't want a non-disabled child), but I WOULD actually be perfectly pleased to have one. I would be frightened of the hardship, of course...but in some other ways, it would be easier for me to raise a disabled child than a non-disabled one.

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    17. First of all, disabilities are a lot more common than Anonymous Poster thinks, particularly if Anon is willing to accept things on the level of allergies and not limiting it to severe disability such as inability to see or hear. The latest statistics I've read say that about 1 in every 5 people has a disability. That's a LOT of people that Anonymous insists would have no hope of happiness because they don't meet every medical criterion of "normality."

      One of my professors lost part of his hearing and wears hearing aids. He's also diabetic and has to watch his diet and blood sugar. Does this keep him from being happy? Absolutely not! He enjoys his career as a professor and mentor teaching students about physiology and the scientific process. He has a lovely home in a nice neighborhood, two adorable cats, a nice car, and enjoys his life a lot.

      Although he had some difficulty with complaints from people who thought he was being rude because he can't hear people talking to the back of his head, this got straightened out. He earned tenure, got promoted, started getting bigger grants so he could mentor more students--a perfectly reasonable level of success in academia. I don't think he's up at night crying because he can't hear people talking behind him and he has to be careful with his diet. That's not a big enough deal to be upset about.

      As annoying as my own disabilities can be, and as challenging as it can be to live in a world made for people with different nervous systems than I have, I don't think my life is devastated or a tragedy, or I will never be happy.

      Nobody's life is easy without difficulties. Friends of mine have had a spouse die of cancer before age 40, have had both spouses get laid off in the same week, have gotten what they thought was their dream job only to find the work environment was horrible, and so on. And that's not even going into problems people face because they live in developing countries or impoverished neighborhoods.

      Imagine what things would be like for my widowed friend if everyone told her that her life was ruined, she could never be happy again, and treated her like a nonperson. It would be bad enough to miss her wonderful husband, but how would she ever put her life back together if everyone was pitying her and saying she's doomed to be miserable? And then shunning her because she's one of *those* people and shouldn't be out in public.

      I didn't meet her until after she'd finished mourning, but she found an engineering job she enjoyed, still had the big house (and now a couple of lodgers to keep it from being too quiet), and stumbled over a wonderful man she's now engaged to marry. She's pretty happy with life even though it isn't perfect.

      Everyone has problems in their life, or problems find them when they least expect it. Disability is just another category of problems to deal with. Just as people can be happy overall in life even if they struggle sometimes, people with disabilities can be happy too. Someone born with a disability at least has the advantage that they aren't trying to cope with the transition from their pre-disability life to living with a disability. You can adapt to a disability, learn compensatory strategies, get supports and accommodations--and stand up to jerks and bullies when they try to make you upset.

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    18. Agreed with BiolArtist.

      I think it's highly useful to remember that MOST people will be disabled, in some way, at some point in their lives. Most. Most people who are not disabled now can EXPECT to be at some point.

      Life is just convoluted and hard and it's our job to find joy and purpose in it. Autism's hard...I'm sure that other cognitive disabilities are hard, and I'm sure physical disabilities are hard in ways that I can't begin to appreciate, but then...a girl from my high school class, pretty, popular, normal in every way, and newly married, died absolutely randomly of a brain aneurism in her late 20's.

      I count myself fortunate. I just don't know what else to do.

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    19. Spaz Girl- I'm right there with you in agreement. We have 4 children- our oldest has autism. People questioned me when we were pregnant with our last- aren't you worried they will have autism? Nope, not in the slightest. Is it harder for a parent? Having a few NT kids as well I can tell you EVERY kid is a challenge in one way or another. Parenthood is a learning process regardless of your child's (or your) neurology.

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  6. Wittgenstein pointed out a great thing. If a lion could speak, we could not understand him. The lion knows such a different lifeway, such a different way of knowing, such a difference. Do we assume he is unhappy? Do we assume he is not normal? He is normal for a lion.

    In this analogy, the original poster may be another kind of cat. Anonymous at 10:12 AM does not seem to be feline at all. The original poster has some basis for understanding a lion if a lion could speak. The interlocutor seems to have none, to be projecting.

    The life you have is a full life. It is the life you know. If you live life well -- and this is known in the wisdom of many cultures now and back through ancient times -- you live in the moment, with what you have, not coveting what you don't know, what you have no idea about.

    Did the interlocutor's sister have a full love? It sounds like she was well-beloved. Though there is grief now in the family, as another kind of feline, I would say that being loved is more important than being "abled" in whatever ways you can name.

    I am disabled, and I cannot imagine what I would be like if I were not myself, the way I actually am, instead of some other person with other powers that would make me seem "abled". And I am loved, and my life is full and joyful.

    Thanks for listening.

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  7. to the anonymous person who doesn't know what they're talking about: Fuck you

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  8. To the person who began with "I apologize in advance if I sound too strict, impolite or offensive, but I hadn't read anything this one-sided about disabilities for quite a while"--this should have been your first cue to think before you typed.

    Quote: "I mean no disrespect to the author, but it just doesn't make sense how a well-educated, smart person like the author, can only focus on one very thin theme. Maybe it is because you have generalized it to "handicapped child" where you should have written "autistic" or even specified the condition. I don't know. I hope so."

    Response: Well, you just disrespected the author by dismissing her feelings. Maybe the author DID mean "handicapped"? Don't you think she knows what she meant? Or do you think you know better than her? Speak for yourself. You cannot tell other people what how to feel or what they should feel. We can only speak for ourselves.

    I have several disabilities, and this post resonates with me on the level of several my disabilities, not just my autism. Not to mention if you read this blog regularly, you'll notice that the author in fact covers a wide variety of topics. Yes, there is an overarching theme, but that tends to be the nature of blogs.

    Quote: "I am truly sorry if you have experienced lack of love or something like that, but my sister was truly loved. And guess what - my Mom and Dad and all of her siblings including me loved her and wanted to have her with us as she was."

    Response: Just because someone has a different opinion from you does not mean that they lack love. To think that everyone must have the exact same perspective as you to have experienced love is a very small mindset. It might do you well to consider the fact that there are many people who love deeply, and are loved deeply, who have a different perspective from you.

    Quote: "And speaking of your thesis that this phrase means they don't want you as a child but want someone else - this is a complete, utter bullshit, I am sorry for using the same language you are. Parents, including mine, wanted their daughter, the same daughter to be healthy, to be able to live a full live. You know why - exactly because they love their child. And don't even try to tell me that lacking the ability to walk, speak, see or hear is a full life."

    Response: I'm blind AND I AM LIVING A FULL LIFE. Sorry if I shattered your reality or something. Your assumptions are complete and utter bullshit. Again, you do not get to speak for all blind people, or all deaf people, or all disabled people just because you grew up with a disabled sister.

    Quote: "I have only touched the tip of the iceberg here, I could go on and one, but I had to say these 2 major things. And if you write an article, you should at least try to look at things from different perspectives - this applies not only to the author, but also to the readers and people who comment. It is not the disability that makes you weak - it is your position as a victim."

    Response: Why don't YOU try to take on a new perspective? Why not realize that some disabled people don't mind being disabled? Some disabled people are PROUD to be who they are. And there is absolutely nothing wrong with that. PRIDE--you know, like the exact opposite of victimhood.

    Quote: "And are you kidding me?! If you had a chance of giving your child the possibility to get cured from autism (if that was possible), would you really say no? Just take a moment and think about it. Or if your child was blind or deaf. Would you really say no?"

    Would I cure my autism? No.
    Would I cure my blindness? No.

    Please try opening YOUR mind. Autism and Blindness are a part of who I am. I don't seek to change them. I am whole. I am happy.

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    1. This comment has been removed by the author.

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    2. I just wanted to comment on the autism cure vs the blindness cure, as I think they are two very different things.

      I have been sitting in front of my computer for over an hour, thinking, typing, deleting, and thinking some more. It seems that every time consider what I am going to say, it ends up being a very ableist point of view. I am posting, though, because I would like to be educated and enlightened.

      Concerning a cure for blindness: If I were offered the choice of gaining another sense -- my lovely brain chose a shark's electroreception as an example -- I would take it in an instant. I would adore the opportunity to perceive the world in an entirely new way, while still retaining the ability to experience it as I had before. I wouldn't look upon my old life as lacking fullness or incomplete. Furthermore, I would not be fundamentally changing the way I think. I would still be me, with the same weird and random thoughts that tumble through my head every second. I think the same would be true of being blind and gaining sight. You would have the same thinking patterns. You would be the same person.

      Curing Autism, though, would fundamentally change who you are. You would literally think differently. How you understand the world would be different.

      Yes, gaining sight changes how you understand the world. However, you retain all of the old ways of understanding the world, and you simply gain another. Curing autism would not simply add a piece to the puzzle, it would burn the old puzzle and replace it with a new one.

      I'm not saying anyone should be forced to cure their blindness should a cure be developed, but it seems to me that there is a big difference between curing blindness and curing autism. In curing one, you gain something and lose nothing -- except maybe the ability to identify as Blind* -- and in curing the other, you gain nothing and lose everything.

      *I question whether you even lose that ability. A bisexual man who marries a woman will from then on live a heterosexual life. It doesn't mean he cannot continue to identify as bisexual, despite the fact that he will never be physically with another man again...presuming he doesn't get a divorce or cheat.

      Again, I realize that I probably have a very ableist point of view, but I can never change that if I don't share my thoughts and get feedback on them. Also, deleted first draft to make a slight edit.

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    3. The first anonymous here again...
      Michael, this is exactly what I meant and one of the reasons I wrote my first comment to start with! "In curing one [blindness], you gain something and lose nothing -- except maybe the ability to identify as Blind". This is exactly what I meant, and it comes from a disabled person - apparently I cannot make any kind of assumptions because I am not disabled (from comments above).

      And agreeing with Michael again - this is why I asked the question in my initial comment about meaning autistic people not all disabled people - being cured from blindness would actually give you another sense and you would be yourself. Curing autism is a completely different story. Exactly what I meant. This is what most parents mean when they say "I don't want a handicapped child" - they want the same child, not a different one, to have all the senses and to have all the experiences.

      Sorry (and I mean this sorry), Michael, if you disagree with me on most of what I have written and now I use your arguments to base my opinion, but they do relate at least in these cases.

      And again speaking about the word "ableist" and "ableism" - this is f*ucked up - as you can read in Michael's post, even he as a disabled person cannot express his opinions in fear of sounding ableist. How does that even make sense? Just because a term has been made up different opinions cannot be expressed without being called names?

      I even got 2 different definitions for ableism: "discrimination in favour of able-bodied people" (Oxford) and "the able-bodied are the norm in society, and that people who have disabilities must either strive to become that norm or should keep their distance from able-bodied people." (Wikipedia=Marshak et al. 2009). I have never, ever said any one of you are any lesser than me and should have less rights or anything. Not to even mention keeping distance. What I mean is that it is completely natural and normal for a parent to wish their child to have all his/her senses and abilities = not to wish to have a handicapped child. And it is not the same as saying I don't want this child or I want a different one.

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    4. Posts like this one are a welcome break to me from the, if anything, over-represented perspective that says that having a disabled child is a horrible tragedy, and the child is a "burden," a "life sentence," or some other inanimate thing weighing down on nondisabled parents rather than an equally worthy human being. As someone who was born disabled and who has chosen not to give up my disabled identity by means of psychiatric medication or cosmetic surgery, I want to see MORE things like this that recognize my worth as I am without having to deny my disability as part of me in order to do so.

      I would not be me (but improved! With added abilities and enhanced aesthetics!) without my disabilities. I would be someone by the name of Shain Neumeier who was a completely different person, inside and out. And why would I wish for my own nonexistence in the name of some other potential Shain Neumeier's supposed happiness, or wish the same for some alternate versions of my disabled friends who like existing as they are, thank you very much, regardless of what their parents might think? The whole point is that we, not you and other nondisabled people, are the authorities on our own worth and happiness, and in fact all of you guys telling us how horribly, irreparably FUBAR our lives are and treating us as such is as much or more the problem than the nature of our conditions themselves.

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    5. Shain, I completely agree with you and am happy to hear opinions like yours. What I want to add to that - you are a grown-up, you have had all kinds of experiences that have turned you into the person you are now. But the article was about parents not wanting their children to be disabled - not about them wanting their grown-up, happy children to have been different.

      And about what you said in the beginning of the first paragraph - I have never thought or said disable children are less worthy. They are of course equal. But why do you make it as a contrast: "the child is a "burden," a "life sentence," or some other inanimate thing weighing down on nondisabled parents rather than an equally worthy human being"? Hopefully I am now allowed to express my personal experience with my family. As I have previously said, my parents, me and my siblings never though my sister was any lesser than we were and she was deeply loved. But saying that having a disabled child is not a struggle for anyone, is quite narrow minded. I do understand your position and reasoning, but it is simply not true that it is the same as having a perfectly healthy child. And it was a horrible tragedy to my parents seeing their daughter become disabled at the age of 3. And not because their life would change (and it would). Because hers would. And as far as a burden - she wasn't of course a burden, but it changed their lives (and ours later too) drastically - my Mom didn't work for 20 years because she was taking care of my sister, my Dad was the only provider for the family, someone always had to be at home for her. So please do understand the other point of view as well.

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    6. Having any child, nondisabled or disabled, is a life sentence...down with children!

      Also, Anonymous, I am not disabled, which is why I wanted to recognize the fact that I probably think of this whole issue in an ableist way.

      Shane: "I would not be me (but improved! With added abilities and enhanced aesthetics!) without my disabilities." I made a specific point not to say that you or anyone else would be improved. For the blindness example that I used, more doesn't automatically equal better. More just means more. A blind person gaining sight just means more senses. In fact, more definitely does not mean better. Isn't it true that when one sense is cut off, the others grow stronger and sharper?

      Also, Shane, perhaps you or anyone else could explain why gaining another sense would change who you are? I honestly don't get it. I do get that curing something like autism, though, would change who you are.

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    7. The implication of "more" isn't a neutral one. Not in this society. And adding a new element to someone's experience and being, especially one that they've been defined to a large extent by others and almost inevitably as a result by themselves to some extent, as well as one that impacts significantly on how they perceive the world, doesn't exist in a vacuum. How could it not affect a person's self and perception thereof drastically?

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  9. Both my sons are Autistic, and I can honestly say that I would not change them or "cure" them if I was given the oppertunity! I do NOT look at them as "less" I look at them as more! More than I ever hoped for, each one totally different, and completely amazing. They are both perfect the way that they are. Is it a challenge some days to raise them sure, but guess what raising ANY child is challenging some days! I wish to change the world FOR them, so that others can see the valuable gift of their sheer presence in this world.

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  10. Anonymous you are right! You were simply stating that every parent wants the best for their child!!!! If someone could take away my sons brain damage that occurred at birth I would be so happy for my son. He would be able to breathe, feed, talk, sit, walk etc!!!! Although he is happy, I know that he would be happier experiencing these things. I don't want my son to settle for the level of happiness he has now. You 'get this' as you have experienced it and I agree with you wholeheartedly. I wonder if the children of the people who commented came home to a child that had been run over, now unable to use arms, legs, lungs would say 'oh he will be happy enough' so I'm not going to fight for anything else for my child? I don't think so!!!

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    1. There is an enormous difference between qualities and abilities you never had and those that you lose traumatically. I would argue that something that occurs at birth and is thus not in the memory of the person who actually lives with a condition is more of the former situation rather than the latter, at least when you consider the disabled person's own perspective the relevant issue and not that of the parents, though it is stickier of a question.

      I speak as a disabled person, not a parent, and the gap between these things is incredibly clear to me from my experience. I don't miss having the teeth that never came in. I don't miss having a normal face that isn't and has never been mine. I don't miss having a brain that doesn't work like other people's, because that person would not even be a person I could call "me" by definition. But when people have put me through "treatments" to make me someone who met their expectations, and I lost certain abilities or comforts as a result (e.g., the side effects of forced medication and the changes to my face as a result of involuntary operations)? Oh hell yes, I missed them. From the standpoint of me, living as me, rather than from the standpoint of someone measuring me against some expectation they had of a different person that they didn't get, the two situations aren't even remotely comparable.

      Of course you want to prevent trauma such as car accidents happening to someone, in part because of its long term effects. That's not anywhere near the same thing as wishing that a person who has always been what they are was not born as that person.

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  11. I wanted to thank you very much for this post. My older brother is autistic and our father has always openly lamented the fact that my brother isn't "normal", to the point where he walked our of my brother's life many years ago and has always obsessively corrected any behavior I have that appears similar to my brother's. It's always upset me greatly that my dad missed out on a pretty amazing son just because he didn't get the child he wanted, especially as because of this I've mostly missed out on a pretty fantastic brother. (He's technically my half-brother from my dad's first marriage and since he lives with his mother I only rarely got to see him growing up). So thank you for feeling empathy for children like my brother, who's parents would rather have neuro-typical children than love the children they have. It means a lot to me.

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    1. It would be difficult not to have such empathy, as I am also autistic and know all too well the kinds of ableism that autistic people face. I am very sorry to hear about what happened with your brother. I hope he is doing well and that you can reconnect if that's something that you both want.

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