Disabled parents can teach other moms and dads a thing or two

By Louise Kinross

Jessica Slice is an Ontario author, social worker and adoptive mother whose book Unfit Parent will be released by Beacon Press in 2025. Jessica, who has a connective tissue disorder and neurological condition, and her husband David fostered and then adopted Khalil. Khalil is now six and uses they/them pronouns. After publishing an essay about disabled parenting in The Washington Post, Jessica received hundreds of messages from other parents who felt isolated and unseen. "The real focus of my book is what disability culture has to offer parenting in general," she says.

BLOOM: Can you explain how your disabilities impact you on a daily basis?

Jessica Slice: My most limiting symptom is dizziness and then second to that is chronic pain. I can walk for a couple of minutes and I can stand for about 30 seconds. If I'm seated I need to be reclined with a lot of support. My wheelchair allows me to go places where the seating wouldn't work. 

BLOOM: Your upcoming book is called Unfit Parent. As an adoptive mom with a disability, have you been viewed as unfit?

Jessica Slice: We were really lucky to have a social worker who did not see me as unfit. Our kid's social worker really liked our family and advocated for us. But one time we were going to court and she said: 'I know this judge has some beliefs that may hurt you. So if possible, try to leave your wheelchair in the hall and walk into the courtroom, because I don't want the judge to think you wouldn't be a good parent.' So I did. It was a very short walk. 

BLOOM: Do you face similar judgments in everyday life?

Jessica Slice: I would say the greater issue is one of accessibility. That's what's most painful in everyday life. My kid went to one school for a while and I was never able to see the inside of it because there were steps. It meant I couldn't attend events, I never saw the classroom and I never went to the dance studio they used. When I can't go to certain areas of Khalil's life that can feel really emotionally painful.

There have been a couple of more complicated situations. Once we were in the airport and I needed to carry Khalil, who was a baby, on my lap while David pushed our luggage. Someone in the airport said I wasn't allowed to carry Khalil like that in the airport, which I think is a ridiculous rule. So we were stuck because David didn't have enough hands to hold the baby and carry the suitcases. That was pretty overt discrimination.  

The title of my book is pretty tongue in cheek. It does look into societal obstacles, but the heart of the book is all of the incredible, adaptive ways that a disabled parent can keep their kid safe; how we utilize community; and how we embrace qualities like accommodation and acceptance and a rejection of perfectionism and what that could mean for parenting in general.

BLOOM: You were initially a foster parent. Why did you choose to foster and were there barriers as a disabled woman?

Jessica Slice: We were living in California at the time and had a two-bedroom house and it was so rare to have extra space that we felt we should open it to people who needed it. Our original intention was to foster older children. We fostered a two-year-old, and then we got the call about Khalil when they were eight days old. We had not expected a newborn at all. 

There were a couple of complications to getting licensed to foster. I had to get a doctor's note saying my doctor thought I would be a safe parent. That was really nerve-wracking since he knew all of my medical history. I was worried he wouldn't think I was a good-enough parent, but he wrote the letter, so that was an internal hurdle. Then getting the training was difficult. The building where the sessions were conducted wasn't accessible and wasn't climate-controlled, which can make me sick. So we had to quit and restart at an accessible location.

BLOOM: What's been most challenging about parenting with your disabilities?

Jessica Slice: I think internalized ableism for me has been the biggest hurdle—the idea that I would be a better parent if I didn't have disabilities. A sense that there's one type of mom, this type of extremely capable and busy and strong person, and that physically I am not that. So a lot of the hurdles are about my own sense of value as a mom.

BLOOM: So holding an idealized view of who a mom is?

Jessica Slice: Yes, and also gender assumptions about who should do what in the home. I think we need to let go of that and divide labour in the home in the way that suits our bodies and capacities and that works. But I have insecurities about that. One example is that I last cooked my family a non-instant meal in 2020. It is outside of my capacity. It would use way too much energy that I couldn't use for other things that I value more. But when I think about being a mom I think about someone who cooks her family healthy, made-from-scratch meals every night. I don't, and my family is fine, but it's internally an obstacle, an image I'm not living up to.

BLOOM: Are there other practical challenges or do you face judgments when you're out in the community?

Jessica Slice: I don't know how people feel when they see us. One thing that keeps coming up that doesn't have to do with parenting is that my favourite coffee shop has two steps and I can't go in. I have to sit outside and wait for someone to come, and I ask them to order for me. When you're in a wheelchair and talk to someone, they try to run away, and that is really dehumanizing. Recently I needed help opening a gate into an alley that I couldn't open in my wheelchair. As I tried, it kept shutting on me. A person was walking by and I said 'Hey, do you mind opening this?' They assumed I was asking for money and said 'I don't have any cash' and kept going. It's those indignities of being in a wheelchair that aren't parent-related, but are about being a person that wants to exist in public.

BLOOM: What's been most rewarding about parenting with a disability?

Jessica Slice: I'm a very present parent and I'm really good at being still and listening and being attentive with my kid. I think that's because I'm so good at resting. I have to be still to take care of my body so I've been honing these skills. A lot of non-disabled parents are always moving and busy and distracted. I appreciate my stillness as a parent.

BLOOM: Are there certain hacks you learned to help you adapt some of your parenting routines or tasks?

Jessica Slice: The house was set up to never have to spend much time standing up. When they were a baby I never used a changing table because it would be ridiculous for me to try to stand to change a diaper. I had a little pad I brought around the house with me. I'd sit on the floor to make bottles and put them in the fridge or to load the dishwasher. For the high chair I got one that could set up on the floor. It didn't have legs and I could sit in front lying on a cushion. There are all these assumptions that babies need to be high up and that was never a part of my parenting.

I was the primary parent for the first six months as David worked. We set up the house so there were spaces where I could recline on cushions. 

I get lightheaded after about 30 seconds standing up and my vision fades and I start to faint. So reclining is how I prevent that.

Khalil was a baby who was very content if their head was on my chest. They really never cried unless hungry or not touching me. That goes back to your question about strengths.

I'm really good at sitting around the whole day together and I was so happy. I didn't feel like I had to be somewhere else, or I was wasting the days. As a result, my symptoms were manageable.

BLOOM: Who do you look to for support as a disabled parent?

Jessica Slice: That's another reason why I wrote the book. When I became a parent, I didn't know any other disabled parents. Now I've met dozens of them through interviews and realized there's a strong community on Facebook. 

Khalil was born in 2017 and I wrote an essay about feeling like an imposter in 2019. I got hundreds and hundreds of messages from disabled moms who were like 'I feel this way and no one's talking about it.'

We feel ashamed and unseen and the measure of our parenting is how much we can pretend to be non-disabled.

That made me start to think about the importance of writing about my experience and being open about it, because it turns out my internal experience was quite common.

BLOOM: What can non-disabled parents learn from parents like you?

Jessica Slice: If I had to give one piece of advice I would say to let go of perfection as the ideal. In doing this book I interviewed non-disabled parents, and so many were distressed in the first weeks of parenting. Things weren't going well with breastfeeding or recovery or they had a crying baby. I think the attachment to how you expect things to be can be really difficult to get past.

When I interviewed disabled people, I found we held on to perfection or expectations a lot loser. We had experienced things going wrong enough times that we were able to ride the waves of early parenthood. So my advice would be to practise letting go of the expectations of parenting.

BLOOM: As Khalil is Black, have you faced racism as well as ableism? 

Jessica Slice: Certainly racism is the water we swim in, but I would not say we've experienced a lot of overt racism. We're pretty careful with who our kid spends time around. Also, the community that I live in has a really active Black community and some incredible Black leaders have embraced our family and kid.

BLOOM: Your sister Megan had a genetic condition and died from a seizure at five. You were seven. How has your experience with Megan influenced your life and how you adapted to acquiring disabilities?

Jessica Slice: That's a great question. I've been impacted by Megan in many ways but one of them is that I've never thought that bodies last forever. I've always had a heightened awareness of our collective fragility, so when I became disabled I didn't have a period of shock, which is common, that I could be disabled. I knew disability was possible for anyone. I knew that was the deal with bodies, that they're unreliable.

BLOOM: What do you hope health professionals take from your book?

Jessica Slice: The biggest thing is that disabled people are quite happy. I spend a lot of time in the book discussing the disability paradox. That on average disabled people rate their quality of life highly, yet 82 per cent of physicians believe disabled people have a poor quality of life and don't like their lives. There's a real gap between the reality of being disabled and the medical perception. 

BLOOM: I thought your book was more of a memoir. How would you categorize it?

Jessica Slice: It's narrative non-fiction. It's a combination of disability theory and interviews and some personal narrative. 

BLOOM: How can we better support disabled people who want to parent?

Jessica Slice: I'd say the biggest obstacle for most disabled parents are laws around child protective services and child removal. Before anything else, we need to change the laws in the U.S. and Canada around disability being an allowable reason for child removal. Support means nothing if we can't retain custody of our kids.

BLOOM: It sounds like you were able to set up your house for your needs without doing a lot of costly adaptations. I've read about parents who buy adapted baby equipment or have it custom-made.

Jessica Slice: I interviewed people who had some really interesting set-ups and detailed descriptions about it in the book. I didn't need that because I was able to make use of what I already had. I also didn't make assumptions about what I needed. If you take a list of baby supplies, I looked at it through the lens of my body, instead of through the assumption that every family needs these things in the first year. For example, I can't really push a stroller. I don't need a high chair or a changing table. I do need more cushions in the house.

BLOOM: Are you able to connect with other disabled parents now to share ideas?

Jessica Slice: I don't spend a lot of time in Facebook groups, but I have made disabled parent friends who I discuss things with individually. For example, we're having a second baby in February, with a surrogate. This morning I was talking to a disabled mom about supplies and looking at options together. I do a lot of that work with friends.

BLOOM: What does Khalil think of your disability?

Jessica Slice: I just asked, and they said 'It's cool.' And then they said: 'Oh, and wheelchairs are very fun.'

Jessica Slice has a number of books in production, including a children's book about how families with a disabled family member adapt play. Read more by clicking on the images on her website. Like this interview? Sign up for our monthly BLOOM e-letter. You'll get family stories and expert advice on raising children with disabilities; interviews with activists, clinicians and researchers; and disability news.