This post is part of Still Wading: Forty years of resistance, resilience, and reclamation in communities of color, a blog series by Strong Families commemorating the 40th anniversary of Roe v. Wade.
I have a photograph of my mother that I love. She is 21 standing in her graduation gown beaming expectantly at the camera. Round belly poking through dark drapes, it’s the first portrait of us “together” — me nested inside of her, a sliver of white pressing through the black folds that usually conceal its opening. As if I am graduating too. At this threshold you can see that she (we) just barely made it to this moment. While I irrevocably altered her life, she was fortunate that I arrived in the world about a month after her commencement.
My arrival was not a given. I came at a time of great change, upheaval, and risk, born in 1968, five years before Roe v. Wade became law. Politically the world was volatile and in the throws of great social movements. Two important leaders—King Jr. and Kennedy—assassinated.
My mother did not want a baby. With her eyes set on international relations she was ambivalent at best about her relationship with my father. I was not the plan, and so, like many young women of her time and class, she sought a way out.
She found a doctor in another town who performed abortions. In my mind she had to climb a dark stairway, grey with creaky steps, to get to the door. My father was with her, and still it took great courage for her to get to this point. But the doctor refused to let her in, or even acknowledge what was about to happen. He told her to come back alone. The feeling of the place and the demand that she come back alone scared her. She turned around and decided that she could not go through with it. Several months later I arrived.
Growing up I always had an inkling that there were pieces of my story I was not putting together. It wasn’t until I was 21 and pregnant, like my mom had been , that I was ready to wrestle with it. Despite identifying as queer and primarily attracted to women, I found myself in a relationship with a man and pregnant in Northern India, far from home. Like my mother, I too had big, emerging plans for my life that did not include a baby at this age. I assumed I would have an abortion when I got back to the U.S. Instead, just before I left India, I had a dramatic and humbling miscarriage.
The experience created an opening between my mother and me that allowed for deep honesty. We shared stories as equals—feeling the circularity and changes of time. While happy to be alive, I was sad my mom had been in that position in 1968. Twenty years of marriage to my father, an abusive and dysfunctional relationship, forgoing her dreams—it all seemed like something that did not need to happen. I did not take personally the idea that I could have been aborted.
I didn’t know that the story, my story, and the nuance and questions about choice would get even more complex with the coming of my son fourteen years later.
Like many lesbian couples, my partner and I were faced with the other side of reproductive “choice” on our road to parenthood. After years of planning, looking for a donor, changing our plans, then trying to conceive, Adrienne became pregnant. I was elated, scared, and deeply aware that my life was about to change.
The early stages of pregnancy were fairly typical. As Adrienne’s body was transforming, I continued my work in youth development and organizing. During this time I became close to a group of young activists who all had disabilities and worked together through a group called Kids as Self Advocates (KASA). They opened my eyes to a new community, perspective, and questions about choice.
The KASA youth were all individually powerful, bright spirits. Getting to know them opened my eyes and heart to think about how medical practice, the deep cultural value of “individual choice,” and our fears lead many of us to abort babies with disabilities. Through abortion we edit our society — and experience — of humanity. I began to question why we choose to keep some babies and abort others, and I considered what I would do if my child had a disability.
Adrienne and I went to the required class for prospective parents of children with genetic disorders and procedures to terminate pregnancies. As a queer person, I was disturbed by how many disorders highlighted in the class simply altered the sex of the child. I had a sinking feeling that this medical and cultural practice was also about editing out intersex babies from our population. I thought about sex selection practices around the world. The parallels made my head spin.
Despite growing skepticism, a series of events led us down the path of pre-natal testing. A small sign in the ultrasound led to more screenings and then to amniocentesis. It was intuition as much as clear medical evidence that ultimately landed us in the waiting room with doctors from Kaiser’s genetics department. Our child had Down syndrome. Stunned and disoriented, we were unsure of our next step.
We had pushed testing back. Now we only had seven days until the 20-week mark when the fetus is considered viable. I would be lying if I said I did not feel pressure from the medical system, and elsewhere, to abort. So we did what I hope anyone would do. We left town, stayed with close friends, called our wisest advisors, and searched for the answer that felt right.
That weekend was among one of the most vivid in my life. We talked with friends and took long walks. We each imagined what it would feel like to have this baby, versus abort it. I realized I felt more connected and open to life choosing to welcome him into the world. We agreed, even though it was scary and unknown, choosing Jonah felt like inviting life and love in.
The words “pro life” have been pitted against “pro choice,” as if they are opposites. In my experience it’s a false dichotomy, and while politically difficult and messy, our truths are much more complicated.
We left that weekend having made the choice to have Jonah. The power of making this choice is that we knew, our community knew, and the medical team knew that we were welcoming him into our life. This made all the difference. I could see it the moment he was born and the entire team—midwife, nurses, doula, even the doctors—were jubilant. You can see it in the photos. There was no doubt, no hesitation, no fear or grief present in the room.
This is not true for many families who give birth to babies with obvious disabilities. Often a sense of mourning, shame, anger, and guilt sweeps over the room instead of joy. But this is not the baby’s problem, or the mother’s or the families’. It’s ours.
After he was born we struggled to find community. Many of the parents who choose to have kids with Down syndrome and genetic disabilities are devout Christians. Other communities secretly (or not so secretly) cannot understand why you would “choose” to have a child with Down syndrome. The magic for us has been trying to find people who will be courageous enough to walk a different path with us.
I cannot describe the gift that it is to have Jonah in my life, although it has not been easy. Sometimes the gulf between my own experience and “typical” parents is the same as that between parents and non-parents. And yet, on a fundamental level it’s also the same joy and the same challenge that we all face.
In Jonah I have learned to see the light of a child’s spirit, the patience and full acceptance that allow him to thrive, the ways my own baggage gets in the way, and the gifts, brilliance, and love embedded in each one of us. Jonah is smart, funny, and deeply curious about other people. He is an emerging actor, DJ and musician in his own right. At 7 going on 8, he is reading and writing, learning math, ice-skating, and attempting to ride a bike. He is part of a family and a community who loves him and whom he loves. He has introduced me to my own joy, deepest sense of love, connection, and self-acceptance. Is there anything else that is important?
As the years pass and Jonah grows, I encounter the same fundamental lesson of parenting, a lesson my mother had learned many years before: we do not know who our children will be or what they will teach us; but we have our own stories and expectations of who they are and who they will be. The more we try to control or alter this, the further apart we become. The more we accept and embrace who they and we really are, the more magic and life we are able to embrace. Some of us get this lesson early and often; others bump up against it unexpectedly or resist it all together.
For Jonah and all of us, I long for a world that values humanity, one that supports us to thrive together—not survive individually, one where we value difference as part of the natural condition of things and where we see our choices as part of something larger than ourselves.
Kristen Zimmerman is a writer, trainer, and consultant focusing on movement building and social transformation. She lives in Oakland, California, with her wife Adrienne, their son Jonah, and their wonderful network of chosen family.
Special Note: Autostraddle’s “First Person” personal essays do not necessarily reflect the ideals of Autostraddle or its editors, nor do any First Person writers intend to speak on behalf of anyone other than themselves. First Person writers are simply speaking honestly from their own hearts.
I’m sorry if this comment makes me sound like an asshole…
But I would also be one of those people who could not understand why the author willingly brought a child with Down syndrome into the world.
Yeah, its great that it enriched the author’s life… but the article seems to be completely selfish.
What about the child? That child will now, no matter how great his life is, still have a genetic disorder his whole life… Maybe he got lucky, and the disorder isn’t impacting him as much as it could have… so far anyways.
Almost all children with downs syndrome will be mentally retarded, among a shitload of other problems.
Quite frankly, I think its horrible that people make choices like this bring children in to the world.
That said, I think once such children are born, they should be treated no differently than anyone else, so I applaud the author’s involvement with organizations like KASA and with her obvious joy over her son.
I just think she (and her partner) made an awful choice by not having an abortion.
P.S. It’s not pro-life and pro-choice… it never has been. It’s pro-choice and anti-choice.
I just want you to be aware that “you made an awful choice by not having an abortion” is an entirely rude thing to say to anybody who has struggled with whether or not to get an abortion. You’re talking about her eight year old kid. I know the internet allows for some anonymity, but would you ever say that to someone’s face? I think not. This woman opened up her family to you. The least you could do is show the bare minimum of politeness.
Also, yes, people with Down Syndrom tend to have an IQ of around 50, but children with Downs walk, talk, play, read and do everything normal kids do it just takes them longer and they need more support.
I said “I think.” Not that they did, but that in my opinion they did.
Those are my feelings on the subject… the words I chose convey what I feel. I’m not sure how to “politely” say that in a way that doesn’t lessen the impact of my feelings.
Yes, hes seven now. He was a clump of cells when the decision was made… his current age has no bearing on the decision to have an abortion or not.
I haven’t been in the situation to say it to someone’s face about a genetic defect, so I can’t say if I would or not… but I suspect I would. I have said to someone’s face that they should either have an abortion of put their baby up for adoption, but that was due to what was going on in her life. She wasn’t thrilled with my suggestion, but she understood why I suggested both options.
Yes, an IQ of 50 would be half of the normalized IQ for his generation, iirc. Sure, hes a kid now, with support and a family that loves him.
He won’t always be, and that’s the part that worries me. Do you know the stats on abuse in regards to the mentally retarded? If for any reason he is cut out from his support group and family, I worry for his safety and health.
In everyone’s zeal to attack me, they must have missed the point to where I said that now that he’s born, none of that matters.
Yo, I’m gonna go ahead and say that this comment makes you sound like an asshole.
Why the fuck is it a “horrible choice” to bring someone with Down Syndrome / any other mental or physical illness into this world? Why is it up to you or any other parent to assume that any child with Down Syndrome will immediately have a poorer quality of life than an able-bodied child? Are you insinuating that people with Down Syndrome are somehow less worthy of life just because they will face difficulties? Christ, I’d like to think life is worth living regardless of discrimination, oppression, and/or health issues.
I’m sorry, but your argument strikes me as rather ableist. The decision to go through with or not go through with a pregnancy is an incredibly complex decision which is based on life circumstances, personal preparedness and all sorts of other intertwining factors — but whether the child is going to be differently abled should not be one of them.
Did you even read my comment fully? Or just leap to attack me as soon as you found a sentence that infuriated you?
“That said, I think once such children are born, they should be treated no differently than anyone else, so I applaud the author’s involvement with organizations like KASA and with her obvious joy over her son.”
Of course I read the whole thing, several times in fact. I just find it odd that you think covering your ass with a cursory statement afterwards makes what you said beforehand any less problematic.
Jonah’s a happy kid and he makes his parents happy – what more would you want from life? It reminds me a little of parents who can’t accept their kids’ sexual orientation because they’re worried we’ll have a hard life. I’d expect that the parallel holds, and that the main thing making life hard for Jonah is people like you who think he doesn’t deserve to live even though he is loved and wanted, just the way he is.
This is not what I said.
See my other comments about him being a kid, if you can bother to read any of them fully before attacking me.
As for your false equivalency with comparing a genetic defect in an unborn clump of cells to a person’s sexual orientation… well, hopefully spelling out what you said makes it clear how absurd a comparison is.
The point is that there are many people in the world who would abort if they had knowledge that the “clump of cells” carried a mixture of biological components that would result in a different sexual orientation. That’s the biggest reason I don’t ever want to have a definitive answer to “What makes us gay?” because that will be used to effectively cull future queer children in cultures that are actively homophobic.
i.e. It’s a valid analogy.
I also think that making the decision to give birth to a child with Down Syndrome, knowing the limitations and medical risks of a life lived with this disability seems sort of irresponsible, but I also think part of being pro choice is having the option of choosing to undertake the burden associated with mothering your creation regardless of the scope of that burden. It is not a choice I could make(raising a disabled child), but it isn’t the worst decision.
Yes, exactly. I would never take the choice away from people, I just think its a bad one.
The only disagreement I have with what you said is that the kid eventually WILL lose his parents, and that’s a time I would be especially worried about…
It’d be a bad or irresponsible choice *for you*. It probably would be for me too. So you and I would choose differently if we were in the author’s situation. Fantastic! Then that’s what we’ll do. Easy. The End.
That’s not what’s making other commenters (me included) so angry and so disappointed. She’s writing about the decision that she and her partner made together to have Jonah. Clearly, it was incredibly hard and very carefully thought out, a joint decision made from the head as well as the heart that they did not come to lightly or easily. At no point does she imply that anyone should make the same choice or be just like her/them. And your only response after reading all that? “Wow, *that* was a bad idea.”
So yes. That you think you know best–for everybody, for people you do not even know–does make you sound like an asshole. She’s not asking you for anything, yet you go way the hell out of your way to judge her and assume the worst as you do. You’re even doing it in this last comment, since it implies that a) she and her partner haven’t thought far enough ahead to put a safety net in place for their child should something happen to them and b) that only the parents of a person with Down’s can possibly actually love them or take proper care of them. (I completely agree that this is a vulnerable population. But you instantly assume that his parents haven’t even considered that.)
“Now that he’s born, none of that matters.” Okay. So if it doesn’t matter, *why are you still saying it?* Why is it still so important to broadcast that her individual choice, according to you, is universally wrong? Your comments are honest, but not respectful or thoughtful.
I’m really grateful that this article exists, and just want to register how disappointed I am that a conversation about whether the author’s choice is “right” is even happening on Autostraddle. I feel proud when authors come to us with personal and intimate stories about their lives because they know that Autostraddle and its readers are a safe community for them, and when fundamental parts of their families and their choices receive unsolicited criticism, I feel like I can’t say that to future authors in good faith. I had hoped that our readers of all people would be aware of how often women are silenced when they try to talk about their lives by others interpreting it as an opportunity to judge the author’s decisions, and be respectful enough to avoid doing that.
I’m disappointed too.
“The Almighty” seems to have forgotten that not too long ago being LGBT was considered a mental disorder. Our lives are certainly much harder and more challenging than hetero cis-gendered people. By her/his/its theory, we should all be aborted.
No, you don’t “sound” like an asshole, TA. You sound like an ignorant idiot who should not be around children anywhere for any reason.
I’m sorry, I didn’t believe AS was a place where you wanted honest discussion stifled in the name of making people feel good.
If that is indeed what AS is, I have no problem with making only positive comments, if any.
It would be dishonest, however. One person’s truth is not always going to be something that makes everyone else happy, and to insist that comments are only positive will diminish the chances of having a productive conversation.
I also thought that by putting an article up, it was an implicit solicitation of comments, some of which might be criticism.
I wasn’t trying to silence the author. I wasn’t aware that disagreeing with her choices was doing so…
The issue isn’t a negative comment. The issue is that your comment was phrased in an unbelievably rude way. Whether you qualify it as “not mattering” now that their child is 8 years old, you explicitly directed your rather vile comment at the author.
Having an opinion, even a negative one, is perfectly fine. But all of us need to make wise choices about where, when, and how it’s appropriate to express those opinions.
People keep saying it was rude.
No one has said how it could have been rephrased in a less “rude” way while keeping its strength, its impact.
I knew it wasn’t “tactful” but couldn’t figure out a better way to say it.
I believe very very very very strongly that it was a mistake. No other wording I can think of can convey my feelings adequately.
Saying things like “I think its irresponsible” or “I feel it was the wrong decision because” or “It’s not the decision I would have made, nor can understand”… all those are far more polite.
And far more watered down than my true feelings.
As this is my last comment on this topic (I was going to respond to everyone who attacked me, but I found it was repetitive, if not just downright outrageous), I want to make three things clear.
The first is that I can separate the original choice from the current reality. My thoughts on what should have originally been chosen have no bearing on what currently “is” because that choice wasn’t taken.
Secondly, I apologize to the writers/family of this article if my comment hurt them in any way, and I hope it isn’t lasting. My intention wasn’t to deliberately hurt anyone, it was just to express my belief. To be clear, I am apologizing for the pain (if any) I caused, not my beliefs.
Lastly, I never attacked anyone, I only disagreed with a choice made almost 8 years ago. The personal attacks I received over this, while quite absurd in and of themselves, should really be kept in reserve until I actually do attack you personally.
“I knew it wasn’t “tactful” but couldn’t figure out a better way to say it.”
Then you should have kept your mouth shut. Seriously. If you couldn’t figure out a way to make your point without insulting anyone, is it even a valid point? Based on all the responses you’re posting throughout these comments, you’ve missed the point entirely. No one is faulting you for having an opinion FOR YOU. The problem is that you imposed your view on the author and her family with
“I just think she (and her partner) made an awful choice by not having an abortion.”
That’s not an opinion, that’s judgement. There’s a difference.
I think maybe by beginning your comment with “I’m sorry if this comment makes me sound like an asshole…”, you probably knew what you were about to say wasn’t tactful.
Perhaps in the future coming from a place of humility and genuinely wanting to know why someone would act differently than you would would prove beneficial. Ask questions! Always want to learn more! But only ask if you want to hear the answer, and not if you just want to give your own opinion and attack their own.
As for “positive comments,” “positive” doesn’t mean “agree”! I feel like positive comments are ones that cause every reader to evaluate their own opinion in a way that leads to genuine discussions, which just makes everyone a better person. It’s all about learning and growing together and wanting the best for everyone else in your community. The best discussions are ones that challenge people! That’s how you develop critical thinking, and who doesn’t want that?
I feel like Autostraddle has cultivated a strong community where individuals can discuss VERY different and often opposing opinions in well-spoken, respectful ways, and hopefully you can be a part of that :)
I don’t even know what to say to this comment. Two of my most favorite people in the world have Down’s Syndrome, and my life would be so radically different if they hadn’t been born. They are the happiest, most loving, kind, and faithful individuals I have ever known. They may do things a little bit differently that you or me, but the majority of their hardship goes completely unnoticed to them – they have the naivety to be able to see the world as a untainted, beautiful place. They are amazing, amazing human beings.
While I am pro-choice, I feel very offended when I hear people say that babies should be aborted based on the sheer fact that they are disabled. Like those the author of this piece referenced, what separates you from those who feel we should abort intersex children solely on the notion that they are not “normal”? What happens if the medical world becomes able to determine the sexual orientation of the fetus – would you suggest the queer ones be aborted because they will struggle in life? All humans have difficult lives, and we surely can’t just go about making dramatic statements suggesting we abort all of the fetuses who will struggle or not fit in. Besides, all of the most interesting people are those who have been faced with obstacles.
Yes, Jonah will have a genetic disorder his whole life. He will also have a whole life, he will have a family and friends. He will learn things and discover the world and be loved. In my experience, people who believe that a person with a disability is somehow never able to fully experience life are people who have limited knowledge of disability. When talking about issues like this, it is important to know where you bias starts and your lived experience begins. Never assume you know what another person is capable of – especially if you are basing your assumptions off of disability alone.
Stating that someone was wrong not to abort a child based only on the knowledge that that child has a disability is not something you can dismiss by admitting people will think you’re an asshole. It is a fundamentally flawed way of viewing the value you place on what makes a life worth living. Just because Jonah will not do some of the things we have done, does not mean his contribution to the world is somehow wrong or less than. His mothers believed they were able to handle any medical problems or limitations. They made an informed choice, not an irresponsible one. You don’t have to agree with or mirror their actions, but do at least try to understand and respect them.
I think this is a matter of reevaluating the connotation we place on the word disability. The point of this article is that we as a society have decided that a fulfilled and valuable life is one that measures up to our falsely constructed idea of normalcy. We’ve painted an inaccurate picture of life and of the world we live in. Editing out human beings we think won’t fit in with our fabricated idea is merely reinforcing that Youre saying that a child who has down syndrome, is mentally “retarded”, journeys through life with any disability or in other words is not “normal” equates to a life not worth living. There is not one correct way for a human being to walk through this world. It is only because of society’s ignorance and arrogance that we decide who’s life will be meaningful and who’s cant.
I wish you would please remind my son of what a horrible life he is leading. Omg – he seems so much happier than you do. Oh…..he must have forgotten about that shitload of problems he has. Oh, wait – that was you.
May you find some happiness in that heart of yours that seems two sizes too small. Now, if there was only a way to rid the world of all the truly damaged assholes walking around. One can only imagine the joy you have brought into the lives of others. I’ll bet your mama’s proud.
While I admit the originally poster’s comment was rude, people who respond with ad hominen attacks are just making a bad situation worse. “I’ll bet your mama’s proud” – Really? If you can’t think of an intelligent rebuttal your comment is unnecessary.
I personally would choose to abort my child if I discovered it had a mental disability, but I would never presume that my choice was better than someone else’s. You do You.
I have difficulty making intelligent rebuttals when I feel that my child and my choices are being attacked. I just tend to go from the gut.
Ugh. This is the kind of stuff that makes pro-choice people look bad, particularly if we think a woman having a right to choose should extend even to areas where it might be uncomfortable for some people – like if their future child has a disability. Which is a right I absolutely support because, without going into much detail, it’s an issue that has come up in my family in the past, and it’s extremely difficult and sensitive and everyone needs to be able to find their own way on this, without judgment from ANYONE.
The reason many women abort fetuses that are found to have Down Syndrome or other disabilities is because they know they don’t have the money to get them the resources they need – and don’t want them to languish in foster care forever (because disabled children generally don’t get adopted). Why is it at all irresponsible if she knows that she has the resources to care for him and wants to make sure he has a good life? It would only be if you think that people with Down Syndrome are somehow inferior. Krissy’s right – your comment is incredibly ableist.
Those of us who absolutely support the rights of the disabled, but also support a woman’s right to choose, already have so many on the anti-choice side acting like we’re insincere in the first point, because (putting sarcasm cap on) obviously the only reason you would support abortion there is if you don’t think the lives of disabled people matter. We don’t need judgmental comments like yours to prove their suspicions right.
I thoroughly enjoyed the piece and I’m just coming across it now.
I’ve read your comments and I just cannot fathom how/why it is acceptable to call bringing another human being into this world a mistake because that human being will have a disability (when compared to most other human beings).
I could see the argument if this brand new human being were to suffer physically or emotionally in an extreme way and would then live a life of pain, but this is not the case here. And even then, of course, that is up to the parents to decide.
Your post leaves me speechless for its content and its tone.
To Kristen, Adrienne,and Jonah, all the best
What a beautiful, moving essay. Thank you for sharing your story and that adorable-as-all-get-out family photo!
Wow. This is an amazing story and I am so happy to see discussions around disability and repro justice here on autostraddle.
Beautiful We need (maybe always?) to be pulled out of the dichotomy style of seeing the world and look with open eyes and hearts. The world is better for having the “conversation” you penned and clearly Jonah and his moms offer the opportunity to enrich us as well. Thanks for writing this.
So beautiful and moving. Thank you for the courage of sharing your journey with us, Kristen. I am grateful that you had the partnership, space and community for your family to make the choice that was right for all of you. I say that knowing and holding space for others in the same situation that may make a different choice, one that is right for them.
In many indigenous communities in the past, children with “disabilities” were often revered and deeply loved, seen as bringing unique gifts to the community. I know that this is true of Jonah, and may you know and remember this truth even when others cannot see or appreciate it because of judgments they have chosen or have been taught to hold. Wishing you and your family love, health, peace, joy, playfulness, and abundance.
Thank you so much for sharing with us, Kristen! You have a beautiful family. (:
Thanks for sharing your story. My partner and I are in the early stages of planning to have kids. We’ve thought about what we would do should we be faced with the possibility of having a child with disabilities. The fact is I wouldn’t know until it happened to me. I respect you for weighing up all the pros and cons and eventually making the right decision for you and your family. It’s not “pro-choice” to judge someone else’s choices. Jonah is one lucky kid to have such loving, accepting parents and extended family.
Thank you so much for opening up your family to us and sharing your experience. I was really touched by your story, and loved when you stated “we do not know who our children will be or what they will teach us; but we have our own stories and expectations of who they are and who they will be. The more we try to control or alter this, the further apart we become.” I think the preconceived expectations of who our children will be are what fuels the internal debates about whether or not to abort a child with a disability, and the fact that you were able to turn that expectation into such a positive outlook is tremendous.
Jonah is very lucky to have such wonderful parents and community. Likewise, you both are lucky to have him. You’re a beautiful family.
this is beautiful. thank you for sharing.
Thank you Kristen for sharing about your path to parenthood. Your courageous essay about your familia past and present, is inspiring. You and Adrienne are amazing parents to Jonah. Jonah is a beautiful little boy who thrives from your comittment and love for him. You inspire me to be a better self, a better parent and a better friend. Sending abrazos and love to your familia always.
editing humanity? ftw.
I think you meant “wtf”.
i seriously dont want to insult or make the author feel bad or anything, because this was incredibly interesting and moving and brave of her to write and share, but the abortion politics referenced within are just plain weird. editing humanity. goodness.
As someone who is very pro-choice – and also strongly in favor of abortion rights – I was kind of disturbed by the “editing” language as well, but I think I’ve already shared my concerns downthread.
I do appreciate the author sharing her story, though, as it was very beautiful and thought-provoking, and choosing to share it here on Autostraddle. :)
To the author of this post…you are beautiful and your son Jonah sounds and looks adorable. I cannot wait to hear his music!
To the first commenter…you’re hypocritical and in no position to criticize a family’s decision to bring a disabled child into the world. If its their choice, its their choice and the circumstances surrounding the birth or abortion of the child shouldn’t be culpabilized. The child is in a better position to be accepted and self-loving than not if they’re in an environment where they’re valued and appreciated than when they’re belittled and looked down upon.
Cheers and much love to you.
This article was beautiful, and your son is adorable! I had tears in my eyes the whole time reading this. You’re so brave to bring a child into a world where most people would not want him. And as to the one comment criticizing her decision, have you ever seen a child with down syndrome? They are often the happiest and most carefree people I have ever met. If there were testing to find out if a child was gay, the same attitude towards them could easily result in abortion. This is extremely scary knowing how many people ‘accept’ their children, but would clearly choose them to be straight if it was up to them.
Thank you so much for sharing. Your points about the ways in which social pressure around abortion is used in incredibly ableist ways are so important to see. I get very tired of seeing “pro-abortion” (in this case, they are not pro-choice, just pro-abortion) proponents who think that people who are poor, or people who are pregnant with fetuses who are differently abled should always have an abortion – instead of recognizing that abortion should be available and accessible for people who do not want children – not children who are “different” or people who lack access to the resources to raise children according to a particular set of white mainstream values.
i’m a queer woman. i had an abortion a year ago and it was the hardest fucking decision i have ever had to make in my entire life. at the time i felt so incredibly isolated and alone and all i wanted was to connect with other queers who’d been in my position, but i couldn’t find anythingggg. thank you so, so much for sharing this story. i have been looking for it for a long time.
This is a wonderful article – thank you for writing so honestly and openly about your life and your experiences.
I have always struggled with the idea of abortion. Ultimately, I would consider myself pro-choice as I feel like every woman must make these decisions for herself. However, I personally could not have an abortion under any circumstances. I can’t help but believe that life begins at conception, so for me it would be my child from the day i found out i was pregnant. This doesn’t come from any particular religious beliefs, it’s just the conclusion i come back to every time i think about or discuss abortion. I would never expect other people to believe in the same things as me though.
Already having this quite firm stand on abortion, I find it especially horrendous that anybody would want to abort their child for being disabled. I appreciate that it’s something that must be discussed and thought about for each individual family and their own beliefs and circumstances.. but for me, life is all about diversity. Life is about people experiencing different and varied routes through the world. I can’t believe that anybody would consider a disabled person’s life any less worthy or valuable than an able bodied person. Disability should not be looked on as a reason not to give someone the opportunity to the enjoy the world. They may not be able to live it as easily and conveniently as an able bodied person, but that doesn’t mean they don’t deserve to live it.
I thoroughly enjoyed hearing what a wonderful person Jonah is and how much he has enriched your lives and i wish your family much happiness! Please ignore people who write comments such as that first commenter on this article. Nobody has the right to speak to you like that about your life and your choices. Thanks again for such an honest and beautiful article.
Your comment hits close to home, thank you :)
As a parent of a 12 year old son with Down Syndrome, I thank you for giving words to so many of my feelings. Diversity is a wonderful thing. And to “The Allmighty” – bite me.
This was such a beautiful essay. Thank you so much for writing it and sharing it with us! I feel like Autostraddle’s super lucky to have this story and I can’t wait to show it to other people so they can enjoy it too!
Kristen thank you so much for sharing your experiences. This beautifully written article is one the reasons I love this website. Your description of finding a connection with your mother was really moving and as a gay, pro-choice, woman with a disability from Ireland, I was deeply touched by your family’s story. Jonah is a lovely, much adored little boy. Choice and acceptance should be afforded to all women and families, whatever path they decide to take.
Kristen- I cried reading the above, for all the right reasons. Thank you so much for sharing.
“The Almighty” – I cried reading your comment, for all the wrong reasons. The thing that made me sad about it was not your opinion – you are entitled to that – but what saddened me most was the thought that if you ever had the privilege of meeting Jonah or his parents they would probably welcome you with open arms and make you feel welcome… it’s a shame you cannot afford them the same courtesy.
I certainly appreciate the author’s point of view and her honesty in sharing it with us. It took tons of guts! I wish them lots of luck!
From a slightly different perspective, though… my BIL was born (disabled, delayed, whatever the right term is) and I was involved in caring for him for many years. Jerry never spoke a single word his entire life. Jerry never walked, sat, fed himself, drank by himself, or was able to use a toilet (changing a 50 year old man’s diapers is, in fact, a whole other deal). He sat and “self-stimmed” (pounded on the floor and roared) for hours and hours on end. He never made eye contact, never responded ever in any way to any stimulus whatsoever and had, as they say, “no measurable I.Q.”
Was there ever anybody “in there”? Beats the heck out of me. I sure never saw it, but who knows, I guess anything is possible.
When my own pregnancies came along, yes indeed I had genetic testing. Although with current treatments and therapies, many kids born challenged can have much better lives than Jerry did, it’s also true that not every one of those kids is going to have a prognosis that involves the potential for significant improvement.
If it were me, and I was trying to decide whether to go ahead with a “challenged” pregnancy, I’d look at the kids, sure, but I’d also look at the adults of 40, 50 or 60 years old and be really certain, that’s what I wanted to sign up for. Because the person will live much, much longer than just their cute and hopeful babyhood and childhood. And, if the person does turn out to be really, really low-functioning, believe me you are in a for a whole different parenthood journey.
I hope this doesn’t sound hurtful or uncaring but sometimes it’s important to think through all the different factors or possibilities that could be involved, when you are making a decision of this magnitude.
I really have to agree with this comment. I think it’s wonderful that the author made the right choice for her and her family, and that her son is healthy and happy. But that is not the full spectrum of development disorders- some people will definitely be as low-functioning as your BIL, and I think there is a lot of room for argument about whether or not it is moral to knowingly give someone that quality of life. I’m not trying to say “abortion is automatically the moral choice”- just that there is a lot of complexity in making this kind of decision that “if everyone were more accepting than everything would be fine” doesn’t really cover. I can see how different people in the same situation- facing a developmental disorder diagnosis of unknown severity- could make different choices.
Thank you for sharing your story. I only hope that I have the same courageous optimism if I were ever to face the same decision.
I have a few genetic conditions that have very much impacted my life – certainly not as severe as Down Syndrome and the like, but important enough to weigh into any future considerations of mine. Though I’m probably about ten years away from kids, given my knowledge and experience, I’d feel irresponsible passing on a BRCA2 mutation (50/50 chance) or bipolar disorder (roughly 20% chance). My entire family went through hell dealing with cancer, mastectomies, oophorectomies and all kinds of psychological mess with eating disorders, suicide attempts and years and years of therapy. I’m not honestly sure I’m capable of handling those from a parental point of view, and being that I went through all of it already, I’m terrified for a potential child.
That said, I absolutely commend the author for having the courage to follow through with the pregnancy. Raising a child with Down Syndrome cannot possibly be easy, and you seem to have more than stepped up to the plate. Jonah sounds like a fantastic, wonderful, well-adjusted kid and your family looks so so happy. Best wishes to you all in the coming years.
To the first commenter- 1) that’s absurdly rude, insensitive and undeserved. 2) unless you’ve faced the possibility of a child with a genetic disorder yourself and had to weigh the options, you really don’t have the right to judge in any way. And even if you have, there are so, so, so many other ways to voice an opinion than being attacking, offensive, and an asshole.
This was an incredibly moving, beautiful essay. Thank you for submitting it to AS.
I think your family is very blessed and beautiful. I feel sad that some comments are less than supportive.
To those who have made derogatory comments: I have two adults in my life who have Down Syndrome. One is 59 and the other is 28. Both are wonderful women who are funny, loving, sweet, joyful beings. They enrich the lives of those around them. I am offended by the implications that they should not be in this world. I cannot believe that people who know discrimination (based on sexual orientation) are choosing to discriminate against others. WTF.
This was absolutely beautiful.
I’m incredibly pro-choice, but I am vehemently against aborting on the basis of disabilities. The diagnoses of certain disorders in utero is not always completely accurate, for one. My brother was diagnosed with Down Syndrome in utero. My mother was encouraged to abort. He does not have Down Syndrome, and in fact, his IQ is 147. He is extremely gifted.
But even if he doesn’t have Down Syndrome, does his life not have value? The same argument is used for the abortion of female fetuses in many countries. That’s eugenics, plain and simple.
But yes, I’ll say it again: the argument for the abortion of disabled and potentially disabled (and how disabled is too disabled??) fetuses is quite close to that for the abortion of females. Not okay.
I don’t think that a bunch of individuals independently making the decision to abort children is at all comparable to “eugenics.” And it’s not like people are deciding to do so because they think people with Down Syndrome or other disabilities are inferior, necessarily. Raising a child with disabilities requires a certain amount of access to money and resources that, especially in the U.S. with its crappy health care system, a lot of people simply do not have. So the alternatives are to either give your child a subpar life (through lack of resources, not because having a disability means your life is inherently “subpar”) or to have him or her languish in the foster care system for years (because children with disabilities generally don’t get adopted), feeling unloved. It’s easy to dismiss women who choose to abort because of disability as selfish or bigoted, but the reality is much, much more complicated.
Besides, “disability” is also a huge umbrella, encompassing a wide range of issues. For some children who are very profoundly disabled and are unlikely to survive long after birth, the choice to abort is more about choosing to give their child a quick, painless death rather than a few hours or days of excruciating pain after birth before they die anyway.
In the context of this essay, “profoundly disabled” being used to describe individuals with Down Syndrome is largely inaccurate. Physicians are still telling expectant parents that their children won’t live long after birth, that they are incompatible with life, which is mostly bullshit now. In the past, individuals with Down Syndrome rarely lived very long due to heart conditions. This isn’t the case any longer. And through early intervention, the overwhelming majority of individuals with Down Syndrome can live thoroughly valuable, productive lives. More than 90% of fetuses diagnosed with Down Syndrome in utero are aborted. That’s not really “a bunch of individuals independently making the decision.” In my opinion, it shows how society views the “less than perfect.” Because MOST individuals with Down Syndrome are NOT profoundly disabled, again, ESPECIALLY with early intervention services that are accessible to most, even the underprivileged.
I maintain that the arguments to abort “profoundly disabled” (and who decides what is profoundly disabled? How far do we take this? Blindness? Deafness? Mild cerebral palsy?) fetuses (including those that are POTENTIALLY profoundly disabled, such as in the case of my brother) mirrors that of the issue of sex-selective abortion in many countries. Girls are seen as burdens, they don’t to the family, they require a lot of time and resources that boys are not seen as having, they won’t take care of their family in their old age, etc etc. A burden to their family, a burden to society. Just as individuals with Down Syndrome and many other disabilities are seen as a burden.
It boils down to ableism and a lack of education, in my humble opinion.
(In my opinion, other trisomies such as 13 and 18, as well as anencephaly and other disorders in which the fetus is GUARANTEED to be incompatible with life, are different issues altogether.)
Yeah, I wasn’t talking about people with Down Syndrome when it comes to the “profoundly disabled” in that context. Read my comment again – I was talking about how the term “disabled” can be stretched to encompass a wide variety of things, not just issues like Down Syndrome where the individual is expected to live a normal, productive lifespan.
And my point with eugenics was that the language that individuals choosing to get abortions is the same thing as “eugenics” is the same thing that the anti-abortion movement (I won’t give them the compliment of calling them “pro-life,” they’re not) uses to suggest that there’s a “genocide” of black babies in America because apparently black women get abortions at higher rates than white women. (Yes, they’ve had ad campaigns to this effect.) With both issues, it’s a lot more complicated – and mainly having to do with the effects of poverty, the lack of a social safety net (including health care, which children with Downs would need to have that high quality of life you’re talking about) in this country, and the problems with the adoption system (namely, that both children of color and disabled children generally get adopted at much lower rates). I noticed you didn’t really address that in your comment, mostly assuming that if I disagree with you I must not understand what Down Syndrome is.
At the end of the day, it really is a bunch of individuals making a choice, even if it’s not a choice you like. Is it because of cultural factors? Yes, but much better to go after those cultural factors rather than ban abortion in those cases (especially as abortion bans have never worked in reducing the rates of it). Educate people about Down Syndrome and how it guarantees a higher quality of life than most people think.
But even if we do that, failing to acknowledge the problems with a lack of social safety net means a lot of women are still going to choose to get abortions in the case of fetuses with Down Syndrome, because they aren’t going to have the resources to give them the higher quality of life that modern medicine has made possible. It’s hard enough for a lot of poor single mothers to support able-bodied children, with the health care system as it is. All the education in the world about how Down Syndrome is not that bad isn’t going to change that.
See, that’s where the statistics don’t match up with your argument.
People that are choosing to abort children with medical issues such as Down Syndrome are not the underprivileged with little to no access to adequate medical care for said children. Statistics show that it’s much more of a upper middle and upper class situation. This is for a number of reasons, mostly due to prenatal care. Amniocentesis and other genetic testing is used mostly by those with access to it. Those with good health care.
So no, it’s not about a lack of access.
It’s about how society views those that are disabled. And that’s bullshit, in my opinion, and quite honestly breaks my heart.
Amniocentesis and genetic testing really compare with the costs of raising a kid for 18+ years who has a disability? I don’t think so. Even middle-class families might have difficulty with those costs. Even good health care plans don’t cover everything.
And that still is something that is better addressed by education than legal restrictions. All the latter is going to result in is unwanted children who are treated poorly or even abused in many cases, because their parents are prevented from aborting them but still don’t understand how Down Syndrome works.
And there will still be some parents, even with education about it, who won’t want a kid with Down Syndrome. So that will still need to address the issues with the adoption system, to make giving a kid up for adoption a more appealing option. We’ll need to educate not only the people thinking of having kids, but the public at large – and making foster care better for children with disabilities.
i can only echo the other commenters who have said thank you so much for sharing your story. motherhood is something that is very far away for me right now, but it is also something i am honestly already looking forward to, and it’s so reassuring to hear about happy families with loving and loved children in our community. i wish you and your family continued love and happiness together.
i also think the other commenters responded to some of the negativity and judgement this essay received adequately, but i’d feel untruthful not mentioning my own disappointment in these reactions, too. i hope for a day when we can all live in a world where our decisions about our bodies and our lives and our reproductive choices are not questioned by anyone, but i’d really hope we were already at a place where the least we could do is not shame and judge each other. and i would just like to reiterate what some other people have already pointed out: it’s incredibly frightening to deem any child “unfit” to be born because of condition X Y or Z, especially when you think of the things that certain people on this planet would deem “unfit” if they had a choice. i’m not sure that was as clear or eloquent as i’d like it to be, but i hope my points come across.
above all, still — thank you, kristen, for sharing such a personal piece of yourself with us. thank you so much. your story is so important and i am so proud and honored to see it published on autostraddle.
Oh, please. How do I get these emails to stop? I’m going to need a Valium or a vodka if I read one more of them. Grant me the serenity to accept the things I cannot change and the courage to hit the delete button prior to reading….
Is this the author of the post? If you use Gmail, create a filter for “[Autostraddle] Comment” that sends them directly to your archives, bypassing the inbox.
Wow. I went into reading this article thinking, as oftentimes happens in autostraddle articles, that I would be depressed and even angered by the views and stories presented, but this story was far from that. It was fabulous.
In agreement with other readers, I am shocked at some of these comments that someone can even question these mothers’ choice. Choice. That is what all the pro choice women’s rights people stand for am I correct? And now here people are questioning the CHOICE these two mothers made to bring this amazing kid into the world. They are brave and awesome people.
I think when people consider abortions based on disabilities such as down syndrome its often because they require not only more care but often require extensive care their entire lives. I don’t think this makes it comparable to selection against females.
Cute family though :)
Sadly, though, it is a viable comparison to sex selection since many of the cultures that practice “female-selected abortions” do have a very gendered society where the male children are born to fulfill specific cultural and familial responsibilities, whereas the female children are…born to be given away to another family so that they can fulfill reproductive responsibilities, at the gain of the husband’s family and to the loss of her own. For many families in these cultures, that would fit the bill for “require[d] extensive care their entire lives” in the sense that the birthing family has a net loss with a female child.
Thank you so much for writing this article and being so open & honest about your experience. Oddly, I was just thinking about this today before even knowing this was on the site. I’m just about at the point of starting a family either through my own pregnancy or through adoption. I haven’t decided yet. But because I’m older and I have Down’s in my family, I think & have thought about what I would do if I found myself pregnant with a child with Down’s or some other disability. This is further complicated by the fact I will most likely be a single parent. I don’t know if one can answer such a question before it presents itself. I certainly don’t have any answers for myself yet. But I really appreciate being able to read about this issue from your perspective and about some of what you & your partner considered when making such a decision.
My cousin has Down’s. She is a 40 year old woman married (to a man with Down’s) who reads, writes, performs and speaks 2 languages fluently. There are many things she needs help with. But she also has a very active fulfilling life with friends & family and things she loves to do. Her & her husband are two of the nicest most loving innocent humans you could ever hope to meet. Yes, there is a spectrum of functionality amongst people with developmental disabilities (just like there is amongst all people.) I’m no scientist but based on my experience with my cousin & others I fully believe that just like any child, their capabilities lie firmly in early childhood development and the sort of experiences they have during very early years. Were they given any education, did someone read to them, teach them how to count, teach them the alphabet, sing to them, etc? During the time when my cousin was born and earlier (such as the commenter with the BIL in their 50s) people with Down’s were written off. Doctors thought there was no chance of having any intellectual function and told parents to institutionalize their children so they NEVER TRIED TO TEACH THEM. This is what my aunt was told but she refused. She & my grandparents and everyone else in the family treated my cousin just like the rest of us kids. We’re 2 years apart so we grew up together with the same rules and early developmental experiences. She was taught to speak 2 languages, numbers, colors and how to hold a knife & fork just like I was. Sure, it took her longer to learn and there are definitely things that I can do that she will never be able to do, but our family got her to a place were she can function quite well in most circumstances largely because they didn’t give up. And they didn’t believe it was impossible. No one is born with an IQ. Sure, you have a certain level of innate intelligence but that’s not the end of the story. It has to be nurtured before ones potential can even begin to be measured if such a thing is even possible. It’s no different with someone who has developmental disabilities, it’s just harder and takes them longer and they have some limits.
I say this in an effort to enlighten some of the ignorance I’ve read in these comments. You don’t have to believe me though. See it for yourself. There’s an award winning documentary about her & her husband.
http://www.monicaanddavid.com/ It’s available on Netflix. I urge everyone interested in this topic to see it especially those who clearly need some education particularly about what it means to be an adult with developmental disabilities.
To Kristen, Adrienne & Jonah, I think you’ll like it too. I’m glad you made the right decision for you.
Thanks for your bravery.
Good luck to you & your family.
Very beautiful and insightful article indeed, thank you very much for sharing your story with us. :) But unlike Rachel I think I’m quite happy the debate is happening on Autostraddle. Maybe that’s because I’m a debate fanatic and just love confronting ideas for its own sake. Most of all I’m happy we don’t all have the same opinions and can talk about it. That being said, it’s true that the first comment was rude and while you are allowed to disagree with someone, you still are entitled to a minimum of politeness and respect.
As I’m currently struggling myself with the whole “what makes a life worth living” thing, this piece really shined a new light on the issue. While I am pro-choice, I can’t say those parents did the wrong choice, since there is no “right” or “wrong” choice, just the one the people do and that we all have to accept, but I’m still sure I don’t understand it.
A child with down’s syndrome will be disabled, with a low IQ and in some cases other health issues. He will be someone his family will have to take care of for his whole life, which will be as long as anybody else’s and probably as happy or maybe even happier, for what I know. I here reference to what other people have said about the way those people look at the world with naive eyes and wide opened hearts.
As far as I can tell, they probably will be a heavy cost for society, as they basically need to be taken care of all of the time. By cost I like to think more of human labour than money, but we all know that in this world you can convert one into the other (which is something I’m uncomfortable with but still, that’s the way it is). On the other hand, what will their contribution to the world be? They certainly won’t be of great progress for science or art… In this case, which is probably the best conditions under which a child with Down’s syndrome can be born, they seem to bring a lot of joy and happiness to their parents, and that’s great! But is it enough?
Wouldn’t have a non disable child brought just as much love and happiness in the hearts of the parents, while leaving them both able to contribute to society’s evolution – and by that to contribute to the well-being of the whole community?
I now I sound quite harsh and maybe over-rational and eventually this all leads to the question of the value of a human life and if we can put a price tag on it. But since it’s the question that’s on my mind now… well that’s the way I see things so far. I’m not saying it’s the right way to look at it; and as you can see I have a lot more questions than answers. Truly, those are NOT rhetorical questions, and I’d be happy if someone no matter its opinion can help me get closer to answers. :)
OK afte that long rant, I want to make it clear that I’m not judging the choice of the parents as being right or wrong. Since I position myself as pro-choice, I think the right thing to do is to give the CHOICE to the parents, what happens next is none of my business, and if they’re happy with the choice they made then I’m happy for them. And I’m really glad the author shared this story with us.
Firstly, let me say I 100% agree with your first paragraph.
From there on you make some interesting, valid points and I definitely see where you’re coming from. I found myself wondering though, do we really apply the criteria of contributing to society to able-bodied people in the same way? Most people won’t make a great contribution to science or art. While non-disabled people may have more potential for contribution to society, with higher capacity for learning and no need for special care, they might also have more potential to damage it. Someone without Down’s Syndrome could grow up to me a hateful, prejudiced person, or engage in criminal activity – outcomes which, from what I know, Down’s Syndrome individuals are unlikely to have.
Many people with Down’s Syndrome are able to contribute to society in the same way an average person does: they can gain an education, get a “normal” job, and make themselves and the people around them happy. If this has to be balanced with a bit of special care, I don’t think that constitutes such a great cost to society that their life should be written off automatically before birth. Maybe it is one piece of the puzzle when making that decision, but certainly not the be all and end all.
Yeah, you are being far nicer than I am feeling, Kate, but all (well, okay, there’s only a vocal handful of them I guess) these people blithely embracing eugenics is totally creepy and infuriating.
Kids are unpredictable. All of them. Maybe your able-bodied, neurotypical kid will end up abusing his family or defrauding the elderly for a living. Or get in a brain-damaging accident, or develop an incurable disease. Or, more likely, s/he’ll just be a regular person existing in this world, working an okay job, doing some bad and some good, not leaving much of a mark beyond a small circle of family and friends. I mean, that *is* how it goes, for most of us on the planet. (I would be interested to know what great “contribution to society” these people clamoring for the systematic abortion of the disabled are making.) We do okay, for the most part. That’s about the best that can be said.
And whose society is it, after all, that we are supposed to be contributing to? Capitalist America? Well, how come? That might be a preference (it’s where I live, it treats me fine), but I can’t buy into any argument that it’s more than that. What right do the disabled have to live? Well, what right do *any* of us have to live? As much as cows, as much as shrubs, as much as parameciums. That is to say: none, especially. But the only society I am interested in giving my contributions and my vote of confidence is one in which we have a little fucking humility and compassion for all those among us.
(And I absolutely don’t buy the cop-out that “Hey, I’m only talking about the unborn, here! Got nothing against disabled people!” When you make arguments like this, you are saying to disabled people: you should not be around. We’ll let you slip by, be grandfathered in — for of course, we are compassionate! — but it really shouldn’t happen again. And though you may try to cordon off those beliefs from your behavior, they will, I think, slip through.)
Not to detract from your comment, but you reminded me of this:
I don’t seem people “blithely” “embracing eugenics” here; I see them struggling, as many people do, with the implications of what the technology has brought to our lives. Time was, when you and I were being born, or maybe even when we had our own pregnancies, people could not know some of the things they know now. But now they can and do, and where to go with that isn’t an easy or necessarily ideologically-driven decision. It’s a hard series of choices to make, especially because you’re not just making them for you, you’re making them for your partner, your other children, and the people around you such as your other relatives. (Just for one example, if you are a sibling to a person who needs extensive, demanding and expensive care, and who winds up getting 95% of a parent’s time and energy, that isn’t necessarily a wonderful or enobling experience). What the poster above was also wondering about, I think, is whether the costs to society of proceeding with a challenged pregnancy are something that should be or could be taken into account. It may be that you feel that there are no costs at all, it could be that you are right, I don’t know.
I do not think, though, that it is always and everywhere “eugenics” to have questions about going forward with a pregnancy where there is a substantial chance that the child will be profoundly disabled. Yes, of course it’s always true that we don’t know what will happen with any of our children. Any way you look at that, it is a sobering and humbling process.
There are times that people will, in fact, discuss the net benefits and costs to society of certain medical decisions. For one example, people talk sometimes about whether such a large percentage of our national health care dollars should be spent on extending the last few months and weeks of life, especially in cases where a person is extremely elderly, or incurable. Heaven knows that I don’t have the answers, but sometimes there do need to be discussions about how to allocate limited resources. And, I think it’s important to be able to talk about things like this without the feeling that even bringing it up, makes you a murderer or otherwise unworthy to participate.
I do, of course, support parents’ decisions to not proceed with a pregnancy that is more complicated than they feel able to handle — nor do I think that engaging in debate on end-of-life care or on *anything* “makes you a murderer.” I should think this hardly needs to be said. (And as far as I’ve seen, at least, nobody here is calling anybody a murderer — I do know “eugenics” is a loaded term, but it is hard to argue that “the promotion of higher reproduction of more desired people and traits, and the reduction of reproduction of less desired people and traits” — to crib quickly from Wikipedia — underpins several comments here.)
What I was mainly responding to is this notion: “Wouldn’t have a non disable child brought just as much love and happiness in the hearts of the parents, while leaving them both able to contribute to society’s evolution – and by that to contribute to the well-being of the whole community?” — as though kids are fungible and any non-disabled child is automatically going to do more good in the worth than a disabled child. And I am suggesting that if people are going to make this argument they ought to take some time to consider what they really mean when they perform this kind of arithmetic and talk about “society’s evolution.” Are they talking about healthcare costs? It was not framed this way. But even so — if you want to talk social policy, okay, go ahead, lay out your proposals. I would suggest, however, that appending these thoughts to an article about two parents’ very difficult, intensely considered decision to bear their child may not be the most appropriate place to do this, especially when the tenor of the discussion has already been set by somebody *explaining* to them how very selfish they have been.
To anyone, I recommend this very long but very captivating article by disability rights activist Harriet McBryde Johnson, which touches on some of these themes from a very personal perspective: http://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html
I don’t know, I think what I posted above is that I didn’t have the answers, but recognized that it’s a tough decision. You can ask me to “lay out my proposals” but when I already said I didn’t know, and recognized it’s complicated, I guess that should have indicated that I don’t think I know what’s best for everyone. I really don’t – I know several couples who have struggled terribly with this specific decision, as well as having personal experience caring for a profoundly disabled person, and all I can say after all that is, it’s hard and far be it from me to tell anybody else what to do. I do think “eugenics” is a pretty loaded term and I’m not sure that if or when you’re in the trenches struggling with what to do, it helps much to hear that.
I also don’t think it’s horrible or insensitive that this discussion is occurring. There have been lots of statements on this thread about the availability of abortion, of course I respect what the author and her wife decided to do, but she herself also talked, at length, about reproductive choice.
If I understand the original point correctly, it seems that many people feel that the choice not to proceed with a challenged pregnancy based on what you think the person will be like, growing up, is the wrong choice. That – as I think you said – it’s “eugenics” to abort just because of a person’s own (probably erroneous) belief that the disabled child isn’t as “worthwhile” as other children.
I am wondering, though, how does that jibe with being pro-choice in general? I mean, if you support a woman’s right to choose abortion, then do you start getting involved in why or how she makes that decision? Suppose someone decides they’re not ready for a baby for entirely frivolous reasons? Like, she would like to have fun first, or it wouldn’t be good for her abs? I thought being pro-choice meant, you don’t start judging why a woman makes a particular reproductive decision, you respect her autonomy over her own body, and you don’t start asking whether she’s doing it for the “right” reasons?
In other words… if someone says, well, I cannot have a baby now, I’m not ready, or I’m not financially or professionally secure, presumably a pro-choice person would respect that choice. But if someone says, I am not ready to raise a challenged child, I think it would be too hard, I’m not sure I really would feel the same about the child and also, by the way, I don’t think it’s a socially responsible thing to do, that rationale is wrong and so therefore – what? If that is the reason the woman would choose to terminate, she should not be allowed to? How is that a worse reason to terminate than being concerned for your abs?
I can understand where people are very concerned with what is happening for kids who are born disabled today. With so, so many couples making the decision not to proceed under those circumstances, it seems clear that we are moving to a society where there won’t be the resources for disabled kids, just because there will be so many fewer of them. And, it might be that an increasing number of parents will feel a lot of pressure not to continue with a challenged pregnancy, even if they wanted and felt able to. I guess what I don’t know is, given that the genie is well out of the bottle at this point, what could reasonably, and consistently with permitting full reproductive choice, be done about that. Any ideas?
“If I understand the original point correctly, it seems that many people feel that the choice not to proceed with a challenged pregnancy based on what you think the person will be like, growing up, is the wrong choice.”
Sorry, but you did not understand correctly. Or at least I am not one of the “many people” whom this addresses.
For the dozenth time, I would like to make perfectly clear that I do, do, do absolutely support full reproductive choice. (Indeed, that is why I began by saying “I do, of course, support parents’ decisions to not proceed with a pregnancy that is more complicated than they feel able to handle”! Not sure how much clearer a blanket statement I could make.) In any of my criticisms and questions, I was speaking solely and specifically toward those who came here in order to chastise parents who choose to proceed with the pregnancy of a disabled child. It is no business at all of mine why any given person may choose to get an abortion, and that’s not a state of affairs I wish to change. But when someone is making *general arguments* that women *should not* give birth to a certain class of children because they’re less valuable than another class of children — well, that argument deserves a strong response, I think.
I take the coward’s way out: I’m probably not going to have kids, least of all biological ones. My sister has an autism spectrum disorder, and I do not want to risk passing it on.
The only comment I feel able to make on the author’s decision for her family is that they were very brave, and I’m glad that in the photo they look so happy.
Not to critique your decision not to have kids (I plan to adopt as well, thought for different reasons), but speaking as someone on the autism spectrum myself, I would suggest looking into the neurodiversity movement before deciding that it automatically equals a bad thing. Some of us feel like we’ve been gifted as much as cursed by it.
The same exact thing can be said for Down Syndrome, and I speak as someone who was diagnosed with Asperger’s via a psychiatric evaluation at 13.
Yeah, and this is why I support educating people better about how these disabilities actually work so they know that it’s not necessarily a sub-par life that their child will have.
As someone on the spectrum, I’m sure you’re familiar with the fact that some of the most high-profile groups – like Autism Speaks – frame it as a wholly negative thing that needs to be cured, all while not having any autistic people on their board. That’s a big part of the reason, I think, that the attitude is still so pervasive that it’s a wholly bad thing. I wonder if there are similar issues with advocacy for other disabilities/differences.
I didn’t make this decision because of something I heard or read about autism being bad. I made it because growing up with my sister was painful. I had no idea what was even going on until I was in my teens and pressed my dad for information.
That said, I’m a lot less informed than I probably should be. (Especially as what little I do know points to my having to be responsible for my sister in 25 years or so.) But I’m NOT having biological kids.
I hope I don’t push too many buttons with my commenting; I have many strong feelings about my personal family situation, and I’m leaving out a lot of details for space and privacy purposes.
Here is the other (hopefully helpful) comment I would make on this… if you are really determined to carry through with a pregnancy, no matter what, then you owe it (a) to yourself (b) to your partner, if you have one and most importantly (c) to the child, to get the best possible handle on the “what.”
There are all kinds of marvelous, uplifting and encouraging stories about “differently abled” people. However, prospective parents need to understand, fully, that not everybody who is born with a genetic or birth disability is going to match those stories, no matter how much therapy they get. There are plenty of situations where there is only so much that can be done, and only so much improvement or progress that someone can likely make. You have to be really honest and realistic about your own ability to handle possibly having a “forever baby,” not only during the early years but for the rest of your entire life (and that of your partner, and especially your other children if you have them… they are going to wind up with the responsibility after you go). Not to mention that this is usually pretty darn hard on a marriage, so you have to be ready for that, too.
Yes, it is always true that parenthood is a gamble, your kids are never going to turn out like you expected, but frankly that is no comparison at all to the enormity of having a profoundly disabled child. And even in the “best case scenarios” people need to know, it’s a whole more than “a bit” of extra care or help, it’s a lifelong group effort and commitment. One that many brave and wonderful people are happy they made, I know, but that IS the situation.
Im so disturbed by your mother’s experience seeking an abortion. Equal and affordable access to abortion as a medical procedure is crucial for women’s reproductive health care. Our access to these services is in severe threat in many states. Let’s not forget Romney wanted to overturn Roe vs. Wade!
Exactly. One thing I like about this story is that even though the author herself chose to carry her pregnancy to term, there’s also a testament to how important it is to secure women’s rights to choose not to, with the story of her mother. I really can’t stand it when the anti-abortion movement uses this “but your mother was pro-life!” tactic – I mean, beyond the stupidity of assuming that if someone chooses to carry a pregnancy to term, they must support the anti-abortion movement, which my mom certainly doesn’t – but there are also a lot of people who were not wanted pregnancies and the circumstances that made those situations less than ideal impacted their childhoods as well.
(not that I like that the author’s mother had that experience, obviously, but you get my idea – it’s a beautiful story about the importance of being able to choose either way)
ugh the part about the author’s mother’s experience was not beautiful
I need to learn how to make comments
by which I mean that the experience was not beautiful, but not that it’s badly written?
I don’t usually indulge in this kind of stuff. But uniquely, I am a friend of Kristen and Adrienne who did not agree with the idea of knowingly bringing a disabled child into the world. Your comment was ignorant and thoughtless regarding the selfishness of the choice. Kristen and Adrienne are the two least selfish human beings I’ve ever met. They have dedicated their lives to helping others. Their struggles with Jonah are truly inspiring to watch. They put more thought into having him than most people put into raising a child. Their experience caused me to revise my own view on the issue. They were right and I was wrong, simply. It took way more courage to into the unknown from the position of loving their child as he was rather than trying to win a genetic lottery. They made a choice, with all of the information in front of them. They chose right. He is a wonderful boy. He was wanted by both parents and has more love and support than any person could want. How many kids can say that? This is essence of choice. The right to make your own decision without some “asshole” second guessing your painstaking, well reasoned decision making. This was the opposite of selfishness.
I loved this article!! I was lucky enough to meet Jonas while volunteering at Buddy Walk this year – he was so much fun! I came home and talked to a friend about how your whole family was beaming, running with him, keeping up with his imagination and snapping pictures – it was definitely contagious joy. I am a college student in the process of becoming comfortable with accepting what it means to accept myself as queer, and one thing I have really struggled with is the idea that I may not be able to be the mom I want to be or have my ideal family (which includes adopting at LEAST one child with Down syndrome). For a very long time this has been a huge part of wanting to reject that part of myself. Thank you for letting me look forward to when I have a beautiful family like yours!
As a carrier of Fragile X premutation and host to a variety of other inherited mental illnesses, it meant a lot to read an article about your family. Thank you for sharing your story, and embracing the manner of intellectual responsibility necessary for caring for your son. It shames me that my own family, and a great many others, though financial mishap and stunned emotional frequencies, have never embraced a worldview as positive as yours in the care of their developmentally-challenged children, now developmentally challenged adults. But that’s the advantage of the queer lifestyle; to understand the sad or difficult parts of life in order to give them worth.
A beautifully written story… thank you for sharing it, and the obvious joy that Jonah has brought you. I have a cousin with Downs Syndrome, and he brings joy to our family as well. Different doesn’t mean less.
“Autostraddle – Choosing Jonah: A Family History of Abortion, Choice
and Love” was in fact a splendid article, cannot wait to look over a
lot more of ur blogs. Time to waste several time on-line lol.
Thanks for your time ,Rhonda