Moms with Disabilities
You last met Kari when I interviewed her for my “Cool Cat” series that featured cool people from the disability community. She was right on the cusp of getting married at the time – her full interview was awesome and it’s linked here.
Well, she got married as planned, and recently had a beautiful baby girl!
And I was able to get her here again for an interview on being a mom with a disability, and capture some of her thoughts and feelings on the subject of disabled parenting. They are deep, and I am finding her thoughts swirling around and lingering in my head.
Without further ado, here is Kari’s interview on being a mom with a disability.
Disabled Moms Interview Series, Featuring Kari Turner
What is your disability?
I have cerebral palsy, which I’ve had since birth. My husband, on the other hand, has a traumatic brain injury he acquired in 2002, long before I knew him. So we’re both disabled, but our experiences in general are very different, because he hasn’t always been.
How do you think growing up with a disability affected your perspective, pride, opinions and culture surrounding disability?
In terms of the points of the question, I didn’t really develop any of that until college, when I met my mentor who exposed me to the wider disability community and disability culture. I’ve been actively involved in it all since then, either in my “day job,” or through side gigs and activism, or both.
Did you have disabled role models around you, growing up? If not, how do you think it would have affected you if you had?
I really didn’t have any disabled role models, at least not directly. Occasionally some well-meaning (read: non-disabled) person in authority, like a teacher or family member, would try to set up role models for me to emulate based on what they thought I should do. But of course that was never authentic.
When I got to college, on the other hand, my mentor really challenged me to explore what kind of role models I wanted for myself, and what kind of role I saw myself playing in the disability community at large. I’m grateful for my relationship with my mentor because, while she herself is not a role model for me specifically, she is someone I look up to based on the interests (as well as some of the talents) we share. We have developed them in different directions over the course of our lives, but if I had never met her I would have developed no sense of the possibilities for me as a disabled person specifically.
I could never have broken through the isolation I had always felt when I was younger. Having a mentor empowered me to seek community, and that has influenced the whole course of my life profoundly since then.
Did you grow up thinking you would be a mother?
I grew up knowing very strongly that I wanted to be a mother, but highly doubting that it would actually happen. Now that it finally has, I still kind of can’t believe it.
Were you scared to become a mom because of your disability?
Socially speaking, yes. I was and am scared of how people will treat me because I am a disabled mom. But I’m not specifically scared of how my disability itself will impact my motherhood.
Does your child have a disability? If so, is it the same as yours?
Since my daughter is currently less than a week old, I have no idea whether or not she’s disabled, although she isn’t presenting that way. All her ultrasounds, etc. were “normal” and her checkups so far seem not to point to specific disability related concerns. So I guess we’ll see what happens. It will definitely be interesting either way.
How does your child’s lack of disability – or difference in disability from your own – affect your parenting? Or does it at all?
Again, I’m not sure yet. I think there are some things I’m self-conscious about that have more to do with the future–like how will my daughter feel about her dad and me when she’s a teenager, for example–than anything I’m going through now.
I’m still just trying to recover from the birth and figure out what my body’s like now, and of course I have all the “Will I break my baby?” concerns most new parents seem to have. I may be more worried about things like “What if I fall with her?” or “What if I can’t pick her up?”–both of which are legitimate issues with CP no matter what (or whom) I’m handling.
What would you say are the most challenging things about being a mom with a disability?
I guess I’ll figure that out as I go. Things are going well for me in the postpartum period and I have a lot of support, so I’m grateful.
Do you think people focus more on you as a mom or you as a woman with a disability?
Since I’ve had a couple of miscarriages, too, not very many people knew about my pregnancy with my daughter. I think that was a wise choice for me emotionally, but a hard one socially. Now that people are hearing about it on social media, they’re coming to me like, “I had no idea…” and on one hand I’m like, “Sorry, but I had to protect my heart.” On the other when I hear them asking, “You guys got a baby?” and “Is she yours?” I wonder if they think we weren’t capable of having her ourselves.
It was funny because as I was going through the miscarriages I felt like, “Maybe we should just try fostering to adopt,” and I was about to broach that with my husband when I found out I was pregnant again. Honestly, doing both–having my own kid(s) and adopting some–would be ideal to me, but we’ll just have to wait and see what happens. I wonder sometimes if having our own child will allow us to establish our “track record” as parents so that if we do choose to go the foster/adopt route at some point, it will be easier for us to do–or if the system will just reject us out of hand because we are disabled.
So many disabled parents I know live with the threat–even from people who are supposed to be close to them–of having their children taken away, that I do fear we will have to be extra careful how we parent no matter what. It's frustrating because I feel the 'abled gaze' in society is so strong that it won't matter very much what we do or how we do it, but rather how the non-disabled people around us see it--even when their perceptions are inaccurate and misinformed.
Disability aside, can you access the care, resources and help you need as a mom, or does disability consistently get layered on by the medical profession?
So far, I have been able to.
Mostly I think that’s because I chose low-medical-intervention midwifery care for my pregnancy, labor, and delivery. I did this because I felt more empowered and I was very blessed to find a midwife who is experienced with disabled moms. I was her first mom with CP, but she has really listened to me, backed me up, and given me tools and support re the kinds of issues all moms face. She understands my unique situation but she doesn’t treat me any differently because of it. She knows my purpose in coming to her has been the same as it would be with any of her clients.
What would you say your greatest skills as a mom are?
I’m looking forward to finding that out, specifically, but right now I think the biggest thing I bring to the endeavor is my patience. Certainly that’s how I made it through the 22+-hour labor and delivery of my 9.5-pound daughter with no epidural!
Right now it’s serving me well as I figure out nursing her.
What do you think your child(ren) would say your greatest skills are?
Speaking of nursing, I hope my daughter appreciates my boobs! My midwife has told me I have the perfect pair for breastfeeding. 😀
How about weaknesses? What do you think the hardest parts of being a mom are for you?
I realized the other day that I’ve kind of been treating having my daughter like doing a homework assignment!
I tend to put a lot of pressure on myself and be a perfectionist who needs to feel like I’m doing everything “right.” Now that I’m caught up in all the nursing and diaper changing and pumping, I’m having a hard time just relaxing and enjoying my kid.
My mom is staying with us right now and whenever I see her or my husband rocking the baby in the rocking chair or singing to her, I get jealous! Eventually I hope things will even out and I will feel confident instead of anxious. I definitely do not want to pass–or project–my perfectionism onto my daughter!
What do you think your kids would say are your weakest areas?!
Sometimes I imagine my daughter saying, “Mom, what’s taking you so long?!” at moments when I struggle to get to her on time for feeding or diaper changing. I struggle with feeling like I can’t do enough for her or like I’m not doing a good job because I have to move more slowly.
I am a patient person by nature, as I’ve already said, but I seldom reserve much of that patience for myself!
How do you think the presence of your disability makes it easier or harder to parent?
I guess I’ll find out as I go along. I will say my overall disability experience has taught me patience, which I know one needs in droves for parenting. Obviously while I’m still recovering from the birth I’m feeling my physical limitations more than ever, so it will be interesting to see which of those persist and/or prove the most challenging over time.
When I was growing up and people would express surprise, doubt, or scorn when I talked about wanting to be a mom/have a family, I always wanted to ask them, “Well, don’t you? Why does it have to be so different for me?” It showed me a lot about how ignorant people can be.
Of course, that’s not to say everyone should want to be a parent, or want the same kind of circumstances in which to parent; my identical twin sister, who isn’t disabled, got married ten years before I did, yet doesn’t have kids and doesn’t want them (although she does adore her new niece!)
My point is that everyone’s life choices in this area deserve to be respected. I think that’s especially important considering that one can’t always control the outcome. If anything, my miscarriages taught me that. We just don’t need all the stigma and taboo surrounding an area of life where so many people struggle to find and maintain satisfaction in their relationships.
My own doubts about my ability to be a mom have always had as much to do with my struggle to find the right partner as with any specific fears about the day to day challenges of parenting. I don’t take the fact that I have a fulfilling marriage for granted, and I know my relationship with my husband is a huge part of what’s seeing me through the transition into parenthood.
This goes back to what I was saying earlier about the abled gaze, but it’s a very palpable possibility to me that, socially, people around us will see my husband and me only in terms of our physical limitations, without regard for the quality of our relationship or our love for and commitment to our daughter.
It scares me more than any fear I might have of making the same kind of parenting mistakes most parents make or fear making.
Can you tell us a parenting story?! Something funny related to your disability?
So this isn’t funny but it is my first parenting story that I’m very proud of. As I mentioned, I chose to have a natural, unmedicated childbirth with a midwife. Most of the process went fairly smoothly, until a few moments before the end when I started bleeding and things were a little touch and go.
The midwife was very upfront with me about the fact that if the baby didn’t come soon, we might have to go to the hospital. But, she didn’t give up on me; instead, she and her team did everything to help me get my daughter out into the world then and there. She has since told me that if we had gone to the hospital, I would have been given an emergency c-section no questions asked, “because the doctors would have said no one with your disability could have done it.”
But I did!
I’m so grateful that the midwife never gave up on me, but more importantly, I can look back and honestly say that at no point did I tell myself, “This is too hard,” “It hurts too much,” or “I can’t.” I owed it to myself and my daughter to see her natural birth through, and now that I have, it makes me want to be a natural childbirth/reproductive health advocate for disabled parents–moms in particular.
Memoirs and how-to from moms with disabilities:
Podcast and PDF
The podcast episode is below and the downloadable PDF is linked here and in button below (just click it: it will take you to Gumroad, where it will say “name a fair price” or something like that – feel free to put 0 in the box (and you can feel free to pay for it too – really, it’s all good and I won’t be hurt!). After you enter a number, it will take you to the next screen where you enter your email address for the download. I do not store your email address and I won’t bug you after – this is NOT a bait-and-switch thing where I say “free download” just to get your email address then harass you. NOPE! The system will then automatically send you the PDF or MP3 to download via your email).
Meriah Nichols is a career counselor. Solo mom to 3 (one with Down syndrome, one gifted 2E). Deaf, with C-PTSD and TBI, she’s also a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.