Should Disabled Parents Have Kids?

A little over a year ago, I found myself drawn to an online discussion that has lingered with me since. The subreddit r/MuscularDystrophy had a number of posts (now deleted) on marriage, family, and future planning for couples where one partner has muscular dystrophy. The gist was: I’m in an inter-abled relationship. My partner is bitter, can’t or won’t communicate, can’t or won’t accept help. How do we think about the future? What about having kids?

The top comment to one of these posts came from a woman who, like me, has the version of the disorder called FSHD. She wrote,

To be clear, I don’t have kids by choice because FSHD is a dominant trait. It means 50% of my kids would have it and I didn’t want to take the chance with someone I’m supposed to love more than anything. So I don’t have any advice about kids.

She goes on to talk about the logistics of the disease – how it is progressive, and there are no treatments available – and how debilitating it became for her father at the end of his life. As for her,

I am currently in my mid-40s. If I fall I am unable to get myself off the ground. I cannot do many household chores. I can’t carry a laundry basket (although I can fold laundry and load the washer and dryer. My husband brings clothes to me to fold). I can’t get off of a normal sized couch because my legs are too weak. I couldn’t do a sit up or push up past around age 16. I was unable to run anymore without risk of fall in my 20s (I had previously been a cross country runner). However, this is a weird disease. Everyone reacts differently.

I’m not trying to be negative but I do try to be realistic.

She sidesteps the emotional issue at the heart of the original question: a disabled spouse struggling to come to terms with his embodied circumstances. Rather, the commenter details the physical circumstances that she intends to avoid passing on to any children and that would heighten the physical challenges of parenting.

This was a suckerpunch to read. I spent a lot of years believing like that, and somewhere in the back of my mind, the fear lingers that she really is being realistic, that all my years changing perspective have been defensive rehearsals of a quaint delusion. But by then there was Salem, just a few months old.

Salem is my son and the most exquisite creature that ever took a breath. It is beyond obvious to me that every moment he exists is better a thousandfold than that moment if he didn’t exist. It is so obvious that trying to argue the point, even affirmatively, would seem absurd. I just see him, and of course he is good. Of course he must have come into existence. The whole world is for him, and nothing would make sense without him.

When I first got pregnant with Salem, I talked to doctors, as one does when pregnant. They all wanted me to see a genetic counselor. Why? What will that do for me? I asked.

I know FSHD has a 50 percent heritability rate. I always knew that. All that science could do about my pregnancy is test my baby so I’d have the chance to terminate if he were disabled. (That isn’t legal where I live, but it is elsewhere.) Or, offer me IVF, test any embryos, and only give the non-carriers a chance to grow.

Jarek Puczel, Beloved, oil on canvas, 2014. Used by permission.

The doctors don’t come out and say it, but a recommendation to a genetic counselor calmly assumes that I want to move heaven and earth (perhaps morality and outrageous amounts of money) to ensure my child does not carry specific parts of my genes. I probably do not want a child that does carry those specific parts, they assume. And that made me angry, less at the specific doctors than at the waters we all swim in, where those beliefs are normal enough to make their way into the undercurrent of thought and medical advice.

But the Reddit poster did come out and say it, and she wasn’t a doctor, she was a person who will not be a parent because of those beliefs.

I actually don’t think everyone has to have kids. I don’t even think disabled people are wrong to take their disability into consideration when deciding whether and when and how to have kids. People should gather up all their gifts and desires and opportunities and abilities, lay them out across the kitchen table, and try to build a good and beautiful life from everything they find. Maybe that does and maybe that doesn’t lead them to marriage and family.

But what people should not do is despise the life and suffering they’ve been given enough to reject the goodness of existence. I can’t help but hear the poster implying that her own life should never have been allowed. If anyone knew what it would be like, they wouldn’t wish it on one they loved: she “didn’t want to take the chance with someone I’m supposed to love more than anything.” And, I don’t know, that strikes me as one giant indictment of God. None of us can know what another’s life will be. We can know there will be suffering; we can know there will be joy; we can know both will be measured out by the hand of God. That’s true for every parent and every child, and its magnificently terrifying and comforting at once.

It all comes down to the question of whether the risk of life is worth taking. We know there will be suffering; the only way to know the shape or extent of it is to live.

That terror and the comfort both spring from the lack of control that new life brings. Nobody actually decides to have kids any more than they decide what kind of kids to have. The best anyone can do is try, and children follow nobody’s timeline. People trying for children can only open the door for some new person to enter, but they really have no say in if, when, or what sort of a person will come through. That’s such a bizarre reality that chafes hard against our cultural obsession with control and convenience and the curation of our lives.

Perhaps disabled parents worry that our children will experience some of the same suffering that we have – and indeed, they might. But we can know for sure that they will experience other suffering of their own, that we cannot foresee. Every child has the chance of being born disabled. Every child has the guarantee of suffering one way or another. That’s not even a little unique to disabled parents or children. That is realistic.

It all comes down to the question of whether the risk of life is worth taking. We know there will be suffering; the only way to know the shape or extent of it is to live. That’s why anybody living at all requires finding some hope and courage somewhere.

The spouse from the original post struggled to even converse on the topic of children. At its root, that struggle isn’t about the children. It’s about the life he has, his fear and anger at the shape it’s begun to take, whether a life with a disabled shape could be good.

I’m having another baby soon. I have to admit, surviving the first twenty weeks of pregnancy with a one-year-old has been one of the hardest things I’ve ever done. Pregnancy with Salem was hard, but I was so astounded to really be having a baby it made up for a lot. Plus I spent as much time as I needed sleeping or lying on the couch. This time I’m in less of a constant state of astonishment and more of a constant state of feeding, changing, and cleaning up after a tiny tornado that lives in my house. I do not sleep when I want and I do throw up in the kitchen sink while a child hangs on my pant leg wishing for cheese cubes.

One-year-olds don’t tend to come out and ask if life is worth it (even if they say more words than “cat,” which Salem does not). They just relentlessly go on needing you to keep living so they can keep living. And inasmuch as hope and courage are emotions, I have felt them very rarely the past few months. But I have gotten up every day and gone through the motions of keeping Salem, myself, and this new baby alive. That is, I have gone through the motions of hope and courage. Meanwhile, one-year-olds just laugh at their own sneezes and run to you when they’re scared, and you don’t ever wonder if they’re worth pouring out a life for.

Another reason for the resistance to being a disabled parent or having possibly disabled kids is the worry that we won’t be enough for them. And again, that’s resoundingly, mortifyingly true. Possibly the hardest part of being disabled is how loud your own helplessness reverberates sometimes. It’s so much less avoidable as a disabled person, and almost overpowering as a parent. But helplessness is still not unique to a disabled parent, just more obvious.

When Salem was born, my body was so beat up and exhausted from childbirth that I could barely hold him. So I did what I could and then released him into the care of other people. As it turns out, needing other people to care for you and your child is guaranteed to happen sooner or later, then again and again. No one parents as an island. It simply doesn’t work like that.

Can I tell you something about that? I’m afraid of the day Salem recognizes how vulnerable his mother is. It will come home to him that I’m not an unwavering provider of goods and comforts and protector from fears and hurts. I can’t give him everything and protect him from everything; I can’t even always take care of myself. But then he’ll also have to learn that while his dad is far stronger than his mom and always seems to know what to do and how to do it, dad isn’t all-sufficient either. And if dad isn’t, who is?

In philosophy, one of the simplest argument forms is called modus ponens and it goes like this:

If A, then B.

A.

Therefore, B.

So I could suggest that if God exists, then life is worth living, and since I believe in God, I can think life is worth living. But more often it goes the other way: if I can look in Salem’s eyes and know that his existence is good and worth everything, then someone has to be there, far, far beyond me, anchoring this truth. Me wishing and feeling his goodness is not enough to make it true, and yet every morning, there he is.