Disabled parenting is 'messier,' and that's a good thing
By Louise Kinross
Unfit Parent is a new book about how disabled parents have rejected perfectionism and created a more humane, collaborative model of care that could benefit all parents. Toronto author Jessica Slice (photo right) is a social worker who became disabled with a connective tissue disorder and neurological condition as an adult. She has a daughter, K, 8, with autism, and a son, F, 1. She does much of her parenting from bed. We spoke about her book.
BLOOM: You write that you had to get a note from your doctor that you were fit to be a foster parent, and that disabled parents are more likely to have their children removed by children's aid. Is that why you called your book Unfit Parent?
Jessica Slice: Yes, that was part of it. Then I also had a suspicion that most parents worry that they’re unfit. Every parent worries that they’re falling short, and I wanted to speak to that.
BLOOM: Can you tell us about how your disability influences the roles that you and your husband play as parents?
Jessica Slice: He definitely does most of the physical work in the house and I do a lot of the mental and organizational work. I think it ends up being a much more even balance of responsibilities than it would be otherwise. I think I would have a hard time giving up tasks if I wasn’t physically prevented from doing them.
BLOOM: What are some examples of tasks that you each do?
Jessica Slice: I do all appointment scheduling, fill out all paperwork for camps and schools and doctors. I’m the one who orders clothes and shoes and pacifiers. I fold laundry and when something gets too small, I get rid of it and replace it. I also do a lot of macro planning for the family, which is thinking ‘This child is starting to need a new thing, how should we get started and what research should we do?’
My husband takes care of nights, which is huge, because I can't move around at night. He does all dishes and cooking and garbage and takes care of the dogs. I also can't drive, so if we need to drive, he does it.
BLOOM: Is there anything people might find surprising about how you parent?
Jessica Slice: I think the biggest thing is how much I do from bed. We don’t currently have an accessible house, and the most comfy place for me is an adjustable bed.
Near my bed I have food for my kids, and diapers and wipes for the baby, and toys and drawing supplies. I’m surrounded, from this one spot, with child supplies.
BLOOM: Is bed where you are most comfortable?
Jessica Slice: I’m the most comfortable I ever am. I have a lot of chronic pain, so I’m never comfortable.
BLOOM: Oh. So you just have to endure. I enjoyed reading about how doable it is to parent from bed.
Jessica Slice: It’s very doable. I’ve been doing all my interviews for this book from bed. I allow it to show up on video on purpose, because I think it’s a myth that we can’t be professional or parents from bed. If we need to be in bed, there’s nothing inherently shameful about this one piece of furniture.
BLOOM: I was listening to a call-in radio show about parental burnout, which had nothing to do with disability. What is it about Western culture that makes parenting challenging for nondisabled parents?
Jessica Slice: I think that parents are burnt out in part because there’s so much pressure to do things on your own and in isolation.
I think a culture of consumerism and individualism makes people feel like if parenting is hard, it’s because they are doing something wrong. And that if you only improved what you were doing and how you spend your days, you would be a better parent.
That's a myth. We need community to parent. We need help and we also need social structures that make it easier.
BLOOM: You note that 10 per cent of parents are disabled, but it’s almost impossible to find information about parenting with a disability and to purchase adapted products. Why is that?
Jessica Slice: I think there are a few reasons. It’s probably far more than 10 per cent. There isn't an accurate survey that’s done on this population. I think we’re underreported and underrepresented.
Disabled people are far more likely to be poor because of inadequate disability income and income restrictions. We’re more likely to be poor, so companies are far less likely to create products for us. We are not a great consumer group.
Also, people are inherently afraid of disability and need. The need for care makes people think about death and fragility and their own mortality. Spending time thinking about disability is something people really like to avoid, to their detriment. The fragility of our bodies is actually the thing we share. It should be discussed far more.
BLOOM: You interviewed disabled and nondisabled parents about their first week of parenting with a newborn. What did you find?
Jessica Slice: The nondisabled parents generally had a much harder time adjusting to parenthood. I think it’s because the skills that are required for parenting a newborn have an overlap with the skills required for managing a disability.
Also, recovering from having a baby feels a lot like disability, and we’re taught to be scared of being disabled, so there’s an existential scare. When you’re in a weaker body, when you’re already disabled, those changes after birth don’t feel as destabilizing. You’ve already reckoned with and adjusted to them.
BLOOM: In what ways are disabled people more suited to parenting?
Jessica Slice: I think a lot of it is cultural. Our system of parenting has rejected disabled parents so much that we’ve had to create our own version and it’s much more collaborative and creative and accepting and patient. It’s a messier form of parenting, and it ends up being more sustainable. In the U.S. the Surgeon General said parenting is a public health crisis. Our current system isn’t working. Because that system doesn’t work at all for disabled people, what we’ve built is a much more humane way of existing.
BLOOM: What values from disability culture could benefit nondisabled parents?
Jessica Slice: I think the biggest thing is to tell the truth about limits and needs. That’s always the first step, and to not be ashamed when you can’t do things on your own. Needing care does not make you incapable of providing care. It doesn’t somehow make you a worse parent if you need help.
Lower the standards of perfection. There is no perfection, and no version of parenting that will insulate your child from pain and suffering. Respecting limits and lowering the bar a little bit.
BLOOM: You write about how your parenting depends on community. When your son was born using a surrogate, you had all kinds of friends involved in helping to care for your daughter, your house, and you and your husband. Is that realistic? You talk about how disabled people ‘join together.’ Yet many parents with disabled children find themselves isolated, and that people don't come forward to help.
Jessica Slice: I have offered practical and emotional and other types of support to each of the people who acted so beautifully after our son was born. So, there’s a real back and forth and sense of collaboration. I think when I became disabled at 28, I started to have to ask for small practical things.
I was living alone, and I asked a friend to take my garbage to the curb. She did and then she asked another friend to bring it back from the curb. Each of those people I was there for, so it’s built from that to this habit of practical requests and offers.
My disability forced me into that habit and vulnerability to ask for very specific things. It’s not expecting people to know what you need, and the request has to be reasonable.
If I start with the garbage, I didn’t ask someone who lived far away. I asked someone in the neighbourhood who could take it to the curb on their way to work.
You have to build that muscle of asking. If someone ever tells me ‘no,’ it can feel really devastating. I get hurt when people tell me no, and you have to be okay with getting your feelings hurt. I cry a lot if someone tells me no.
BLOOM: Your daughter is autistic. How did having your disability prepare you for that—or not?
Jessica Slice: I think it’s made me let go of certain assumptions about what her life would be like much more easily. I know other parents with a child with the same manifestation of autism that she has, and I think they have more grief.
Because I grieved my own disability, I’d already done some of that work. I had to reckon with my life being different than what I expected. I had a really difficult couple of years trying to confront my own disability. I think other people may experience that grief with their own [kid's diagnosis], but I’d already done it.
BLOOM: You acquired your disability as an adult. You write about the earlier version of you as being 'obsessed with achievements, shiny, young, and notably, not disabled.' How did disability change your values?
Jessica Slice: I mean it profoundly changed my values. I had the feeling before I was disabled that the ideal life existed, and I could get there. I thought if I have a certain level of adventure and of professional success, and see my friends the right amount of time, the ideal life was just around the corner.
I don’t think that at all now. I think life for everyone is mostly pretty hard and the best weeks are the ones that are simply annoying. If I’m mostly annoyed for a week, I think nothing has gone terribly wrong.
I think I value honesty and the thing I value the most is being a stable and loving parent. I want my kids to feel safe and adored by me.
BLOOM: Would that have been your top focus prior to when you became disabled?
Jessica Slice: No, I think I would have held them to the same standard of wanting everything to be perfect. I would have been relentless at wanting things to be as good as possible. And I don’t think that now at all. I don’t care about things being as good as possible.
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