Last year I started to have serious problems with my menstrual cycle. It was irregular, I was having extremely painful cramping even between periods and when I did have my period it was very heavy and lasted for weeks. I had just been laid off of my job as a paralegal, but I was doing freelance secretarial work for one of the other lawyers who shared space with my old employer, so I rented out a desk. It’s a kind of family in that it’s a small office, mostly women, and people feel like they can be up in your business. I was taking a lot of time off due to the pain and numerous doctor’s appointments trying to figure out what the hell was wrong with me (turns out my thyroid was out of whack and I have endometriosis). One of the attorneys in the office had represented my mother 5 years prior in a case against my father for back child support, because at the time I had been designated an “adult disabled child” and my father was supposed to be paying my mother support for my care due to my inability to work. So she had detailed information about my diagnosis and my mental health history.
One day she pulled me aside and asked if I was planning on getting a hysterectomy because of the menstrual problems I was having. She stated that she assumed I wasn’t going to have children anyway because of the fact that I was bipolar and the disorder is genetic. She also assumed that I wouldn’t be able to “survive” a pregnancy because I would have to go without medication for 9 months. Her final assumption was that I would be incapable of caring for a child due to my disorder. She claimed she was concerned for my health and since I wasn’t going to use my uterus anyway, a hysterectomy seemed like the best option to “cure” whatever was wrong with me. I was not surprised that she felt she could ask me an extremely personal question like that, because she’s just that kind of person. I was also not surprised that she had the audacity to make that series of assumptions and then actually express them to me, because I’d dealt with non-disabled people’s attitudes towards hereditary disabilities before.
People seem to think that when you have a disability that you could possibly pass down to a child, it’s their business to recommend that you refrain from having children. This is often disguised as fake concern for the well-being of the potential child-bearer, such as in cases where medication would have to be stopped due to the risk of harming the child in utero. Or, maybe they feel that it would be wrong for you to continue a bloodline that is tainted with disability, so they just have to speak up. Never mind that plenty of people who don’t personally have a disability are carriers of genes that may lead to disability. Disabled minds and bodies are viewed as acceptable topics of casual conversation, and your personal medical and life decisions are subject to critique and judgment. Basically, you’re a bad person if you make the decision to have a child despite the chance it will be defective like you.
That’s really what it boils down to: you’re imperfect, so your responsibility is to do the world a favor and remove yourself from the gene pool. If you’re receiving governmental disability benefits, the attitude is that society doesn’t need another burden on the system, so please don’t make any more babies that end up not being able to perform as upstanding, gainfully employed citizens. The concern expressed is really a concern for society at large rather than actual interest in the health of the potential parent.
By taking the decision all people make of whether or not to have biological children and making the choice for them, disabled people are dehumanized and their agency over their bodies are revoked. The practice of eugenics and the history of forced sterilization of disabled women in particular bears this out. It’s dangerous territory to police who should be “allowed” to procreate, and no one should be shamed into deciding not to have children. Some disabled people may feel that they don’t want to take the chance that they may pass their disability on to their children, and some may not want to take the risk of pregnancy if it could negatively affect their health. But the decision is a personal one, and neither nosy coworkers nor supposedly well-meaning family members should assume they know what is in a disabled person’s best interest.
I have an inheritable genetic disability. It is an incredibly slow-progressing neuropathy of the lower legs and arms which may or may not cause me to be in a wheelchair in my 60s. My father, from whom I inherited it, is 64 this year. He had to retire early but can still get around with the aid of a scooter. He has led a wonderful and productive life, and still has many good years ahead of him. When I was preggers with my first child, my MIL encouraged me to have an abortion, for fear I “might pass something on” to the baby. I was FURIOUS, and explained that genetic mutations happen, even with “perfectly healthy” parents, so no I wasn’t worried about “passing something on”. You get whatcha get, I told her. After my second child was born (she had counseled me again, during the pregnancy, to have an abortion), I learned that my husband has bipolar I.
To this day, I have no idea which disability she was trying to keep us from passing on, but it still pisses me off that she would encourage me to terminate two very much wanted pregnancies. It might have been nice to have a heads up about her son, though. Not so we could make a decision about not having kids, but it would’ve been nice to know what was coming without having to learn the hard way.
Do you think she knew about your husband having bipolar disorder? Most people get diagnosed later in life, I think. Still, though, that’s no reason to tell you to have an abortion when you want the child.
Um. I remember that my SIL was told many years ago that having a child was one of the things that could help with endometriosis. I don’t recall why and have no idea if it’s actually true.
Anyway, how rude of her! Oops. Maybe she has a social communication disability, that can be a serious problem in today’s interlinked enviroment, perhaps she shouldn’t risk having kids that can’t be tactful? You could suggest this to her, next time she makes a similar remark.
We all have abilities and disabilities. I’m nearly blind without glasses, obese (a disability socially, if not in actuality), depressed, pale skinned (high risk for melanoma), and passed on ADHD to all three of my kids (studies show ADHD adults are at least 10% less productive in the workplace). I’m fortunate that two of those are invisible, or I’m sure I’d get comments too.
I would have loved to go off on her, but she signs my SO’s paycheck and sometimes mine, so I had to keep my mouth shut. I really do think she is somewhat socially stunted, not disabled, but just totally unable to think about other people’s feelings.
Pregnancy may alleviate endometriosis, or it may make it worse, or it may make no difference at all. Either way, I have more than once explained to doctors how completely unacceptable it is to suggest getting a child to cure a health problem – even if it actually were a guaranteed cure, that’s still not a reason to have a child!
I have endometriosis. For me, spending at least nine months without painkillers is not something I would consider gladly. But then, I’m happy with my child-free life. If I weren’t, I might make a different assessment.
And by saying that our genes shouldn’t be passed on, these people are saying that our lives aren’t worth living. If you point that out to them, they tend to get all huffy for some reason…
What an incredibly rude person! So sorry to hear that you have to deal with that.
And honestly? I think that ideally, people should be able to support any kids they plan to have. I kind of agree with that part. However, I understand that someone on public assistance might actually be a great parent because they’d spend so much time with their children, so maybe my opinion is crap.
But that’s it. If someone can reasonably expect to be able to raise their kids without public assistance, I don’t care what flaws or disabilities they may have. The ability to survive is the most basic thing we need to pass onto our children, after all – not the ability to be a perfect and beautiful flower.
I don’t know, I’d have to disagree that being on public assistance (and what I mean by that is SSI or some other kind of disability income) should preclude you from being able to have kids. I don’t think it’s a good idea to have kids specifically to GET on public assistance, but if you can’t survive without it and you want kids, I don’t know that you should be denied that right. It’s a slippery slope.
That goes beyond rude. It was a cruel way to pick at you based on what she knows about you. It sounds to me like it was mean, cruel and that she intended to demean and hurt you. Truly awful.
My partner has a disability that is heritable and that was one of the reasons he did not want to have kids. He was afraid of purposely inflicting his pain on another person. I, not being disabled, didn’t see it the same way said inheritance wasn’t a guarantee and that we could handle it if it happened. Of course I have never walked in his shoes so maybe he was right. We did ultimately have a baby and she is healthy and happy. The story ended well for us and our child but I don’t know what would have happened if our baby was disabled like my partner. I know he would accept and love the child unconditionally but I don’t know if he would feel the same way about me.
Disabilities really, really suck and from what I have seen, the physical pain is not always the most hurtful thing. The worst part is being treated as less than a full human being and less deserving of rights, courtesy and respect than others. I will end my rant here but I could go one for a long, long time.
My partner has a disability that is heritable and that was one of the reasons he did not want to have kids. He was afraid of purposely inflicting his pain on another person.
Honestly, I do feel that way sometimes, but mostly I’m leaning towards not having kids because I don’t want to contribute to First World overpopulation. We use up such a disproportionate amount of resources compared to Third World peoples, and yet so many people are worried about them having too many babies. It’s really us that needs to aim for zero population growth. Anyway, that’s a topic for another post!
I am not shocked this woman said these things to you. I absolutely agree it’s part of our culture to decide who is allowed to or gets to reproduce and how many kids they should have. I am still wading through all the ways we do this. I am a straight, cisgender middle class white woman married to a white man and we have two kids. So I don’t get “policed” *directly* very much at all for my family structure (although of course, going through birth, miscarriage and abortion as a woman you’d better believe I’ve had my reproductive autonomy threatened, questioned etc).
Thank you for this post.
Uh, and just in case I wasn’t clear, I mean our culture IS doing this, not that I agree they SHOULD be doing it. I most decidedly do not think that.
Oh no, I got what you were saying. And I think women period are too often policed in regards to their reproductive rights (duh).
my period’s going out of whack too. i had 2 3-week periods, and, after 10 days of progestrone, one that made me anemic and gave me fainting spells for a week, and now birth control, which has the weight gain risk which I just really don’t want since I already weigh over 300lbs. I’m afraid the only solution any doctor will give me is to lose weight. >.>. When I got a surgery done a long time ago, there was a side effect of it that would potentially affect whether I could nurse children, and everyone involved (I was a teenager) was like ‘oh, but you won’t need to worry about that’ and I was like ‘!!!!!’ I’d like to nurse children some day!
And it was kind of disturbing to me how it didn’t matter to anyone. I’m sorry you had to go through someone encouraging you to get a hysterectomy. The doctors here in town are scary prone to giving them when they don’t need to. A nurse friend told me that, for cervical cancer and such, it’s a last-ditch effort, and when my friend had something going on down there, the doctor immediately said ‘you don’t want kids, right?’
she’s single, and in her late 20s. And I know like 30plus women who are fairly young and have gotten their uteruses removed, not because they wanted to, in fact they reallly really didn’t want to, but because the doctor was too lazy to do anything else. Ugh.
I think I read a statistic somewhere that hysterectomies are the most commonly performed optional surgery. Not sure about that exactly, but they are done WAY too often for problems that don’t necessarily need that as a solution. Like you said, most doctors want the quick, easy fix.
it’s scary and sad.
btw i really like the way you always respond to comments. makes me feel all special.
I do my best! Hate to leave people hanging.
I’m disabled – sort of. I have epilepsy, which is a bitch and a half to deal with (pricey meds, mostly, and no health insurance) but my seizures are controlled with medication with very few side effects, so it’s a totally controllable disability. My doctor – my redonkulously rich neurologist doctor who thank-all-that-is-good doesn’t hassle me about paying him – has never asked about my reproductive status. You can totally take medication while pregnant (as proved by my mom, who did just that with me, my sister and my brother) so I don’t think he sees it as an issue. I’ve gotten the occasional comment from other people (ex’s mom, a few friends) about “passing it on” should I ever have a child. See, my doctor actually knows how epilepsy and other neurological disorders work. He knows what it’s like to live with epilepsy. So does my mom, and my sister, my brother and my dad. These people would not bat an eyelash if I decided to have a kid (at least not for those reasons.)
When I was 20 I was super militant about my birth control. Hell NO was I having a kid, especially not with my lazy video-game-playing boyfriend. I mentioned my birth control in passing to a friend (I had decided on an IUD) and they said, “Yeah, it’s probably best not to pass it on to anyone else.”
Wow. Seriously? I knew exactly what she was talking about, and I couldn’t believe my ears. I asked for clarification, and she said, “You know, your seizures. It would be AWFUL if your kid had epilepsy.” It’s like I had the plague, and I was randomly sneezing on people whenever I left the house, spreading my horrible plague-y germs. I was furious, and humiliated, and ashamed, and furious again. No one had ever made me feel like my epilepsy was some sort of scarlet letter, a burden that I must not pollute the human gene pool with. That was the first time I had ever felt like that; having an “invisible” disability made it easier to manage, especially when I was younger. I’m glad my doctor and my family know what’s what. What’s scary, though, was that my friend wasn’t just being an asshole – she was voicing a very common “concern” that is common in a society that usually doesn’t know much about living with or supporting someone with a disability.
Thank you for writing this post.
Wow. Seriously? I knew exactly what she was talking about, and I couldn’t believe my ears. I asked for clarification, and she said, “You know, your seizures. It would be AWFUL if your kid had epilepsy.” It’s like I had the plague, and I was randomly sneezing on people whenever I left the house, spreading my horrible plague-y germs. I was furious, and humiliated, and ashamed, and furious again. No one had ever made me feel like my epilepsy was some sort of scarlet letter, a burden that I must not pollute the human gene pool with.
Isn’t it lovely when people just bust out with that shit and act like it’s some kind of common knowledge and you’ll naturally agree? I’m sorry you had to experience it.
As someone who is disabled AND chooses to be childfree AND a tiny part of the reason I’m childfree is becasue I don’t want to pass on my genes, I’d still find the idea of someone assuming or recommending that I not have children becasue of my genetics INSULTING and WRONG.
I believe fiercely in body autonomy. My body, my choice.
Maybe I can’t say that my health issues are private becasue I talk about my disability on the internet but I can say that it’s personal. Ultimately, the choices I make about my health are no ones business except my own.
Separate from the choices you make for your body being no ones business but your own, asking someone if they’re thinking about having a hysterectomy sure seems to me like over a boundary. Reproductive issues are very personal.
I’m surprised that a professional woman, a lawyer to boot, would not pick up on how inappropriate such a question is.
I agree with what you’ve said, I respect you for saying it, and I’m really sorry you had to deal with such a invasive question in the first place.
As someone who is disabled AND chooses to be childfree AND a tiny part of the reason I’m childfree is becasue I don’t want to pass on my genes, I’d still find the idea of someone assuming or recommending that I not have children becasue of my genetics INSULTING and WRONG.
I totally respect that people may not want to pass something genetic on. But yeah, it’s really none of anyone’s business why you want to have or not have children. It’s just ridiculous.
I’m surprised that a professional woman, a lawyer to boot, would not pick up on how inappropriate such a question is.
That is actually the least surprising thing for me, because she’s rich and white and has this personality flaw which causes her to not think about other people’s feelings before she talks.
I think that ALL women’s ability to control if/when and how many children they have is the primary foundation upon which feminism lies. This includes the decision to go ahead and have children regardless of what eugenics-based bullshit someone might have to say about any visible or invisible disabilities a woman might have, or the decision to have an abortion for any reason whatsoever, or whatever. The only person who should have any control over a woman’s reproductive system is the woman herself. I guess I’m just repeating the obvious here but your post gave my brain a few things to chew on during this boring-ass night shift I’m working!
That was worded really well! And you’re right, a woman’s reproductive freedom – to have kids or not have kids – is massively important, and the fact that women still don’t have 100% control (whether through hack laws anti-choice states push through or social stigmas) is proof that feminism isn’t done yet.
Totally agree. And the obvious obviously needs to be repeated repeatedly. Ha!
“That’s really what it boils down to: you’re imperfect, so your responsibility is to do the world a favor and remove yourself from the gene pool.”
Thats what I feel even as a person with a visible social stigma, but able bodied. It has made me consider using donor eggs , sperm or both. It is really depressing, all the fighting in the world cant make them see you are human with all the human desires everyone else has.
I’ve thought about using a surrogate because I can’t stop taking my meds while pregnant, but eventually I just decided (as I stated earlier) not to contribute to First World overpopulation, so if I did decide to have a child it would be via adoption. But obviously that’s a personal choice, not one that I’d mandate everyone follow.
I found your experience very interesting, because I continually face the opposite assumption. I’ve chosen to not bear children (only partially because of inheritable diseases) and am relentlessly being told how I’ll change my mind pretty soon, or regret it terribly. This is not a decision I just made on a whim: I’m also bipolar, and experience has shown me I can’t forgo medication; addiction is inheritable, and I’m the only female in my family without one; I just don’t want to be pregnant; and I’m infertile. What really gets me is that the questioner only ever focuses on the last part – “Oh, you poor thing! Are you going to do something about it?” -as if *that* was my biggest hurdle. I’ve started to respond with – “Well, I stopped using condoms because it’s just overkill.”
I agree with you completely – these kind of comments are scarily ignorant. This viewpoint both reduces women to mobile incubators AND burdens us with the responsibility of sustaining a ‘good’ society.
I’ve chosen to not bear children (only partially because of inheritable diseases) and am relentlessly being told how I’ll change my mind pretty soon, or regret it terribly.
That’s really amazing, I haven’t heard that viewpoint expressed before. I mostly get congratulated on my apparent decision to not have children, even though I’ve never expressly said that I wasn’t going to.
I agree with you completely – these kind of comments are scarily ignorant. This viewpoint both reduces women to mobile incubators AND burdens us with the responsibility of sustaining a ‘good’ society.
Exactly, everything falls to the mother. It’s completely unfair.
I’ve been getting that lots of times.
“So when are you planning on having children? ”
“We’re not. And I couldn’t if I wanted to.” (Slight fib there, it’s not conclusively proven that I’m infertile, though it’s highly likely.)
“But aren’t there treatments? ”
“Yes, but a) they may not work, b) they would require me not to take meds for my excruciatingly painful condition.”
“But that would only be for nine months! Besides, you can always adopt!”
*sigh*
Yes! 9 months of excruciating pain is totally nothing to worry about! People blow my mind.
Thank you for sharing your voice on this matter….I rebologged this post because your words are clear to the point , voicing issues that some cannot find the words to express…
http://watermirrors.tumblr.com/post/769846467/out-of-the-gene-pool-disability-and-biological
I have had the opposite discussion at times, that because I am disabled and considered a rebel I should have children just to prove that my disability isn’t that bad. Except that it is that bad, I couldn’t care for a child and I don’t want kids. I do not understand why either side of the coin should matter to anyone but the person having the baby. I would say people but in the westernized culture it has become too common for the woman to be the mother, the father and the bread winner.
As a person on SSI I will say this, if I wanted children I would have them. The idea that people are disabled and cannot work and therefore less than isn’t even wholly true. A lot of persons with disabilities could work with accommodation but we are so undervalued that there is no accommodation. People forgo reasonable accommodation and do not work because of the stress. SSI would be enough to live on if my humanity was valued over my ability to work at any job. I am a productive member of society and my child would be raised to be so as well. Maybe not by society’s standards however. I appreciate your refuting that being on a fixed income should negate reproductive rights.
Thank you for this post, I am new to your blog and am about to dig into your archives for more mentally delicious goodness.
If you decide to have children, I know that they will be blessed to have a strong mother. That’s the end of my worries for them right there. No matter your choice, it would be the right one for you. So simple. So good.
As a person on SSI I will say this, if I wanted children I would have them. The idea that people are disabled and cannot work and therefore less than isn’t even wholly true. A lot of persons with disabilities could work with accommodation but we are so undervalued that there is no accommodation. People forgo reasonable accommodation and do not work because of the stress. SSI would be enough to live on if my humanity was valued over my ability to work at any job.
I was on SSI for about 6 years and the amount they give you to live on is a joke. I wouldn’t have been able to support myself had I not been able to stay with my mother. And for me, accommodations for mentally ill workers are not something employers want to deal with because that makes us “unreliable”. I’m lucky I’ve become relatively stable on meds, but for the past year it’s been pretty rough.
I’m a little late to the party (just discovered your blog through Feministe!), but I wanted to chime in because this is something I think about all the time. My husband and I both have clinical depression and will probably be on meds for the foreseeable future. It runs in both of our families. My 20-year old cousin just went through a year of hell coping with the onset of her clinical depression. (Sidebar-it would be AWESOME if people were informed that many mental illnesses manifest in the early 20s and so you might want to look in to that if you’re at that age and your whole life recently fell apart…)
The thing is, I think I really want to have children. I’m not sure, and definitely not for a few years yet, but I’m feeling the pull. But given the likelihood that our kids will inherit our depression, I feel so torn. That’s not to mention the months off meds, and my terror that postpartum depression would trigger another major depressive episode. And then there’s my doubts about my ability to be a mother…
It occurs to me that there is a serious need for support services and tools for parents with disabilities. I’m not thinking of monetary support so much as therapy, medical advice on options, group support, tips on child diagnosis, etc. Does anyone know of services like these in their area?