‘I did not expect motherhood to legitimise me’: parenting with a disability
‘Becoming a mum put me in the supercrip camp’: Lucy and James Catchpole live in Oxford with their two young children
Lucy: We are both disabled, but our disabilities are very different, and the world has always treated us very differently. James is the epitome of the “good disabled”, as far as everyone is concerned. When we met, you simply had to adjust slightly to the unusual shape of him – and that was it. And isn’t that just the dream disabled person, really? A whole leg missing – the clarity of it! But, like many disabled people, I was a category error. People seem to be particularly suspicious of significant disability when it’s invisible. So when we met, I was the bad disabled. The hard-to-categorise.
Back then, I could pass as non-disabled, but was actually very limited. At first, I appeared to be the nondisabled girlfriend of an amputee – a “carer”, perhaps? Then we were both crutch or walking-stick users – did we meet at some sort of special club? After that, the tragic phase: a wheelchair user pushed by a man with an artificial leg. A terrible accident, maybe? Now that I’m a full-time wheelchair user, society finds me far less troubling. Now there’s a clarity to my situation, just like James. I miss walking, but it’s a relief to fit so neatly into people’s expectations.
Parenthood was something I desperately wanted. We both did. And feared it, too. For both of us, putting my capricious, fragile body through pregnancy and birth was terrifying. But for me, there was an extra dose of fear. I was terrified of the world’s response to my pregnancy. Really, the idea that I would selfishly use my difficult, burdensome body to grow an entirely new human – completely unnecessarily – felt like taking the piss.
So, when I became pregnant, I steeled myself for our first, difficult meetings with midwives and doctors, expecting to have to justify my decision. To be infantilised. And, of course, at times I was. But largely, that isn’t how it turned out. Instead of the disapproval I expected, the doctor at my first scan responded very differently. “I don’t think anyone could fail to be impressed by you,” he said. This was totally new to me. Somehow, by becoming pregnant, I had jumped out of the difficult-disabled category and joined my husband in the supercrip camp.
I did not expect motherhood to legitimise me. And yet it has. I think motherhood, or at least my motherhood – as the wheelchair-using mother of non-disabled children – acts to cancel out a lot of the things about me that the world found so disquieting. There are so many ways disabled people are infantilised – we’re frequently just not seen as adults. But now, whereas before I had been infantilised, my children seem to act as an automatic pass to adulthood. Where I expected motherhood to open me up to even more judgment, it has had the opposite effect.
James: We were matchmade by a friend who has always said – only slightly defensively – that the match occurred to her not because we were both disabled, but because we had other things in common and, anyway, she just thought we’d get on, all right? And our friend was right. On our first evening together, we worked out we had a lot in common. But when it came to our disabilities, we discovered our experiences could not have been more different.
I’m an amputee – missing all of one leg – and have been for as long as I can remember. I get around on crutches. For me as an amputee man, I’ve always found public perception to be ostensibly positive. You’re thought of as heroic – superheroic, even. As a kid, you’re “amazing”, “a trooper”. In your 20s, people start assuming you were a soldier and that you gave your limb for king and country. Then if you walk fast, climb stairs easily or do any kind of sport, you’re “inspirational”.
So that was my life as Amputee Man. But then I morphed into Amputee Dad… As you might imagine, having a baby just added a new dimension. There’s already a brilliantly unearned halo effect in being a dad out and about with a young baby. You’re clearly doing better than just “helping out” and that’s enough to buy you some very indulgent looks. The bar is low, let’s face it. Being a capable father of a newborn on one leg and crutches clears that bar with some room to spare. Women have cried, then come over to tell me they are crying.Follow the Catchpoles on Instagram @thecatchpoles
‘I defy all the things that people think’: Cathy Reay is a writer based in southeast England. She is a queer single parent of two children
As I grew up, I began to desire children who would create the kind of bustling, noisy home I had always craved. But I was conflicted by the ableism I faced, both in society and internally. I didn’t think I would ever meet somebody who would want to have children with me. When I did eventually fall in love, our relationship blossomed sure and fast, as did our family. It was like I’d been holding my breath and I could suddenly exhale.
People with achondroplasia, which is the type of dwarfism I have, have children by caesarean section. My partner and I both worried about how I would recover, how I would manage the physical part of being a parent. These worries were never a reason to deter either of us, though.
For my first child, I remember being at an ultrasound scan and my doctor’s stand-in asked me: “You know, it looks like the baby is going to have dwarfism, is this something that’s going to be a problem for you?” I was taken aback. What they were really saying was, “This baby has something wrong with it. Do you want to keep it?” It was a reminder that people view our lives as faulty and less than. I felt so othered, and I worried that my baby was going to experience that, too.
When I was seven months pregnant, I fell over, landing on my stomach. As soon as I stood up, I had a horrible feeling something wasn’t right. An ambulance was called, but staff at the hospital refused to see me. I had to really fight to be taken seriously. They did a scan and found that the baby was suffocating, so they performed an emergency caesarean, the rushed process of which felt very undignified and at times unsafe.
My daughters knew early on that we are all disabled. I’ve always named our disability and we talk through the things they’re concerned about. Nondisabled parents don’t know what to do with me, because I am defying all the things they think about disability. I am pushing up against misconceptions like: “Disabled people don’t have sex” or “No one would ever be attracted to a disabled person” or that “Disabled people can’t conceive” and “Disabled people can’t look after other people, they can’t have dependents”.
My kids are marginalised in more ways than I am, and it’s vital that I help them to understand how the world sees their disability, their race, their gender. Their identities aren’t a problem – ableism, racism and sexism are. They’re both very aware that they’re disabled. People’s attitudes are something I constantly have to navigate with them as a parent.
‘Disabled people are seen as totally sexless’: Nina Tame is a disability advocate, writer and content creator and has four children
I was at a petting farm with my two youngest kiddos. It was the first time I’d been out with them in my wheelchair. My six-year-old was off with his dad and I was with my toddler in his buggy. We were approached by a person holding a cute baby chick. I say we, but it was really just my toddler as, apparently, at that moment I had become completely invisible. This person began to pass the cute baby chick to my toddler and I said loudly and clearly: “Please don’t give him that. He’ll try to eat it.” I was glanced at, dismissed, then watched as my son held out his greedy little mits, took the chick then immediately went to put it in his mouth. Told you so, Sandra.
That was the first time I realised that people didn’t expect me to be a mum. I’m now 41 and I have four kids.
I was born disabled with spina bifida. Looking back to my first pregnancy in 2004, I didn’t even identify as disabled, and my SB was something I tried to keep as hidden as possible. My own internalised ableism was huge, and the excitement of being pregnant was overshadowed with a sense of but… But what if the baby has SB like you? But what if the baby makes your SB worse? So, the relief that my first two pregnancies were indeed “healthy” was palpable. Well, like a eugenicist’s worst nightmare, I eventually (third time lucky) did have a baby like me. A gorgeous, wonderful, beautiful baby with spina bifida. I remember the doctor telling us: “Your baby has SB. We don’t know how serious it is. He might not be able to walk. Would you like a termination?”
A termination of my very, very wanted baby, purely because he was like me. Because a life like mine isn’t worth living? What a load of bollocks.
I’ve never felt guilty for giving my baby SB, because I don’t see my SB as a negative thing. Most of the time, it’s neither positive nor negative, it’s just a part of who I am. Still, I feel the judgment, I see the looks. Oh, the horror that I bred. How awfully irresponsible of me.
I think it’s hard for society to view disabled people as being parents for so many reasons. First, we’d have to be having the sex to have the babies, and for some reason disabled people are all seen as pure and good and totally sexless. In reality, some of us are proper little filthy minxes having all the amazing saucy sex.
Then there’s this idea that someone in a wheelchair must be totally broken. If my legs don’t work, then surely nothing works. Then, of course, there’s the idea that surely if we need extra care, we can’t possibly give care. If people can get past these outdated attitudes and realise I am indeed the Mama, then I am inspirational by default. Proper cream-your-pants inspirational. Someone saw me taking my kids to school once and cheered in delight. ‘You’re doing so well!’
My youngest child’s favourite game is riding around on my lap pretending Mummy is a bus. Or busting out some moves in our regular kitchen discos. You know that a kid’s favourite things are wheels and bubbles, right? My youngest is delighted when he sees another chair user, and he went through a stage of being really sad that he wasn’t disabled, too. That was a strange conversation. “It’s OK, baby. You might be one day.”
Disability doesn’t make you a lesser parent. That’s just ableism whispering in your ear – and that guy’s a total wanker. It’s not a shame that you’re a disabled parent, either. It’s a shame we live in a hugely inaccessible world that totally erases disabled parents.Follow Nina on Instagram @nina_tame
‘Autistic is only one thing that I am’: Joanne Limburg is a writer and creative-writing lecturer. She lives in Cambridge with her husband and son
When a psychologist confirmed that I was, as I’d long suspected, an autistic mother, my (non-autistic) son was nine. I held off sharing this information with him until he was 13, when he was given The Curious Incident of the Dog in the Night-Time to read at school. “You know the boy in that book?” I said. “I should probably tell you I’ve got the same sort of brain as he has.” To which my son’s response was: “But you’re nothing like him!” “I know I’m not,” I said. “Go figure.”
My early memories feature very few faces. One snapshot that springs to mind is that of a line of great-aunts, sitting on chairs arranged in a row: shoes, knees, handbags – and a twisting blur of smoke where each head should be. For years, I thought that the vagueness of this image must reflect the fact that grownups’ heads were too far above my eye level for my memory to get the details down clearly. I now realise that it was because I tended not to seek out adult’s faces, and I came to this realisation because my baby son couldn’t get enough of them.
At some point, he must have realised that his mother’s face didn’t behave like most people’s faces. When he was about five or six, he would ask me, “Why is your face like that?” This would usually happen when my mind had wandered to a strange place, and obviously my face had wandered with it. It does that sometimes.
My son kept watch on my face because children watch their caregivers’ faces and because my face sometimes did strange or interesting things. I kept watch on my son’s face out of my love for him, for the gratification of a shared smile and because I was an anxious mother who wanted to make sure nothing was ever wrong.