When Gabriella decided to have a child, she looked to other disabled parents for support
By Louise Kinross
Gabriella Carafa (above with daughter Giovanna McKenzie) has a long connection to Holland Bloorview. She grew up visiting our neuromuscular clinic and uses a wheelchair. Eventually she became a social worker in our child development program. More recently Gabriella embarked on a new journey—parenthood. "I was really lucky in that I had a couple of friends with disabilities who already had kids, so I asked them a lot of questions," Gabriella says. "But they all had partners who helped them physically and I didn't have a partner, so I had to figure out how I was going to manage that on my own." Gabriella is now a solo mom to six-month-old Giovanna. We spoke about parenting as a single, disabled mother.
BLOOM: Recently I heard an interview with Eliza Hull, an Australian woman who's a disabled mom. Her new book We've Got This includes stories from 25 disabled parents. She says a common issue they face is discrimination. It could be in the community, when they're out with their kids, or in the medical system, when they're planning a pregnancy. What was your experience?
Gabriella Carafa: That's interesting because I went to a specific clinic at Sunnybrook Hospital that's accessible and they only deal with disabled moms, so I didn't face much of that discrimination piece when I was planning it.
But I faced it when I was younger and would talk to people about wanting to have kids. They would say 'How are you going to take care of the child, you can't even take care of yourself?' My family members were really concerned at first. They couldn't understand why I wanted to make my life 'harder' than it already is by having a child.
I did have one experience of ableism with a respirologist who said I shouldn't try to have kids as my lung capacity was not good enough. But a friend who had the same doctor had been told it was okay. I pointed that out and the doctor said 'She must have already been pregnant.' So I guess if you're asking for permission before getting pregnant, people have a lot of opinions. I didn't have any issues with my breathing during pregnancy.
There were family members and medical professionals who didn't recognize I was pregnant when I thought I looked pretty pregnant. Because I'm in a wheelchair, they just assumed I'd gained weight. When I'd tell someone I was pregnant they'd say inappropriate things like 'You don't have a husband. Who are you pregnant with?'
BLOOM: Can you tell us a bit about your pregnancy?
Gabriella Carafa: Sure. I spoke with my healthcare provider in 2018 about becoming a single parent by choice, and I was referred to a fertility clinic. They explained different options for me. Once I decided on the process and the donor, we were ready to begin. Shortly after I became pregnant.
BLOOM: Now that Giovanna is here, what's been the greatest joy?
Gabriella Carafa: Being able to see the world through a baby's eyes. Learning things she's learning and getting to watch her grow and change everyday. To me that has been the best. It's amazing the way she looks at things and it makes you appreciate the little things. It could be a spoon or a flower you've seen a thousand times or the sunset, but everything to her is really exciting.
BLOOM: What has been the greatest practical challenge?
Gabriella Carafa: Because I moved to a more rural area to live with my mom, finding staff for me has been really difficult. In a few months we're moving to another condo in the city and I'll have my staff help me. But right now we're in the middle of nowhere.
A lot of personal support workers take the bus and there are no buses here. It was also a difficult time because of COVID, so a lot of PSWs weren't working. I had to rely on my mom a lot and I had to pay privately for nighttime support instead of using support from the government because it was so hard to find people. If I'd stayed in the city I wouldn't have had the same problems.
BLOOM: What kind of funding do you have?
Gabriella Carafa: I'm on a program called direct funding where I hire help for my personal care and I have funding for nurturing assistance, and it can be the same person. Nurturing assistance is not like a nanny or a babysitter.
From my perspective, nurturing assistance is when you get support that you direct to help you care for your child. It's an attendant helping you do the physical things your child needs when you can't. Maybe you can do 80 per cent of tasks, but the last 20 per cent are a problem. The bath is a good example. They can fill up the bath for me and put her in, but I can wash her, dry her and get her dressed.
BLOOM: If you could change one thing about how we support disabled parents, what would it be?
Gabriella Carafa: From the get-go, before they become parents, to ensure that parenthood is even a conversation that comes up. It's like sexuality and relationships. Young people with disabilities need to know that having a child is an option for them. It needs to be part of a regular discussion.
I've had a lot of good experiences, but some people find themselves unexpectedly pregnant and they don't find a lot of support. We need more education for health-care providers and parents of kids with disabilities so they don't assume you're not a good parent because you can't carry a car seat, or because you hold your child differently.
BLOOM: What advice would you give disabled folks who want to be parents?
Gabriella Carafa: Try to connect with other parents with disabilities because they're going to be the greatest support to you. They can discuss what you need to think about before having a kid. And even if you find yourself pregnant, they can give you lots of help. The majority of my friends are very excited about having our kids and figuring out ways to support each other.
Bring it up with a health-care provider. The Centre for Independent Living has a Parenting With a Disability Network and they can connect you with an individual who has kids who can talk about what's possible.
The disabled parents I know, while overall they face some discrimination, have found a lot of hope and support with other disabled parents. I think it's hard if you only know other parents who don't have disabilities.
There can be a lot of judgment. When I'm out I've had people say 'Is she comfortable like that?' because of the way I hold Giovanna, when she's perfectly content. And even if she's not, she could be hungry or in a transition. It doesn't mean she's uncomfortable.
It's funny because when I'm out with my attendant at the mall and I have Giovanna on my lap, people still don't think she's my kid. They may ask the attendant how old she is or remark on her cuteness.
BLOOM: Has anything surprised you about the journey so far?
Gabriella Carafa: I think I'm really lucky because I work with moms in the perinatal field, so I feel I had realistic expectations. I'm more tired than I thought I would be. I'm still working through, as she gets older, the help I'll need and how it will change. I have all of that internalized mom guilt, too. But a lot of mine is around disability and some of it is stuff other people experience.
For example, if I go back to work, is she going to be upset about that? Or if I work the same amount of time I used to, will I not be spending enough time with her? Is she exposed to too many people? Will she know who her mom is? I didn't think I would worry about things like this so early on, but I knew they'd come up. There's where a community of disabled parents comes in. It's so helpful to share our experiences.
BLOOM: Do you have plans to return to your psychotherapy practice?
Gabriella Carafa: Yes, I have my private practice and I still work at North York General. I will probably take off a year.
BLOOM: Do you call yourself a single mother by choice?
Gabriella Carafa: I do. On Facebook, I'm in several single moms by choice groups nationally, internationally and locally. And I know one other disabled mom in one of the groups. There are also groups for disabled parents as well. You have to use your discretion with Facebook groups, but I did find talking to other disabled parents very helpful.
BLOOM: Is there anything important we haven't talked about?
Gabriella Carafa: I think a bit about why I became a single parent by choice. That's important. I don't want people to assume that disabled people are not going to start a family with a partner. I was ready and at a point in my life where I wanted to have a kid and I didn't meet the right person yet. Having a child was something I could do on my own. If I meet the right person in the future, that's great.
I hear people say 'It's a last resort.' I don't want people to think that. I'm not even that old. Having a child felt like the right next stage for me, and I didn't have a partner so I had to figure it out. I'm really lucky that I have such supportive family and friends. Everyone loves Giovanna and we're doing really well. I'm really happy. I'm glad that she's here and I get to be her mom. It's still surreal. Some days I look at her and say 'Whose kid are you?'
Maybe in the future I'll create a support group for single moms by choice with disabilities.
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