Published on November 1st, 2018 | by Cheryl Klein1
“Parents use what they have to do what they need”: Dr. Kara Ayers of the Disabled Parenting Project on Creativity and Community
Ability in its essential form is not a construct: We all have the ability to do some things and lack the ability to do others. I am able to pick my 3.5-year-old up and carry him for a couple of blocks. After that I’ll tell him my arms are tired. Sometimes when I put him down, he’ll say, “Your arm is sleepy, Mommy?” Kids learn and adapt to their parents’ limitations quickly.
I wasn’t able to breastfeed him because I haven’t had breasts since 2012, when I was diagnosed with stage 2 hereditary breast cancer. I also didn’t breastfeed because we adopted, for reasons both related and not related to the cancer thing. A perverse part of me always hoped some asshole would see me bottle-feeding and say something about the superiority of breastfeeding, and then I could lay the world’s biggest guilt trip on that person, unleashing all the rage and grief of my four-year uphill battle to become a mom.
When it comes to disability as an identity, I feel like I have one foot in each camp. I pass as typical-bodied except in locker rooms. I have a good long-term prognosis (knock-on-wood) and face no more obstacles in my daily life than any other exhausted 40-something.
But I have had multiple surgeries and take medication daily. I have to monitor my cancer status and my bone density, and I am enrolled in medical studies. Every six months I have Spiraling Death Thoughts in the weeks preceding cancer check-ups, because I also have PTSD for reasons related and not related to the cancer thing.
Sometimes, now, when I talk about having had cancer, it feels like a lie—a thing that happened in another time to another person, and I’m just talking about it to get attention. Other times, it feels like the only thing that ever happened to me, like it is me.
Labels are problematic. And limiting. And necessary.
I learned about the Disabled Parenting Project from Elizabeth, a Facebook friend I met in a group called Parenting for Social Justice. She did more than her fair share of educating this group of moms, myself included, about ableism. My spellchecker doesn’t even recognize ableism as a word. (“Ablest,” yes. “Ableist,” no.)
The Disabled Parenting Project aims to move the conversation forward while serving as a community and resource for parents with all types of disabilities.
Dr. Kara Ayers, Associate Director of the University of Cincinnati Center for Excellence in Developmental Disabilities, explains that the Disabled Parenting Project grew out of a report that founder Robyn Powell did for the National Council on Disability: “We realized there was still so much more work to be done.” And so, with Dr. Erin Andrews, they set about to do it.
MUTHA: How has the project impacted your own parenting?
Dr. Kara Ayers: The DPP has connected me to the true subject matter experts–other parents with disabilities–in a way that no formal or medicalized program ever has or could. It’s allowed me to express everything from feelings of isolation as a parent with a disability, through a blog, to a query about what car seats might be best for my toddler, as a parent who uses a wheelchair. It’s also reminded me of the ongoing injustices that parents with disabilities face. We are all immersed in the challenging tasks of parenting, but I still remain committed to changing archaic laws that put our families at risk.
MUTHA: What are some examples you’ve seen of parents in the DPP community helping each other, either in practical, problem-solving ways or in terms of emotional support?
KA: Recently one mom posted about her first successful trip to the grocery store with her toddler, alone. She uses a wheelchair and has a spinal cord injury. She described buckling him into the car seat and how much joy they both felt when they shared a high five. I especially loved reading about her triumph because I’ve been venturing out alone more with my youngest, who is also a toddler. It can be a challenging age for all parents, but especially parents with disabilities.
There’s also a mutual benefit to problem-solving together. People have shared videos on diapering strategies. I rarely see expensive products from the durable medical equipment industry suggested. Because parenting isn’t considered an activity of daily living, you generally can’t get a script for insurance to pay for a product or service that supports your parenting. This is frustrating, but has certainly inspired creative approaches to problem-solving. Parents use what they have to do what they need.
Our community is also a powerful source of word-of-mouth marketing when a product does meet many of our needs. The LapBaby, an easy-to-use strap to secure an infant on a seated lap, is a recent example of a product that helped many people. Parents shared pictures, videos, and commentary. I’ve seen certain models of car seats and even vehicles gain the same momentum in our community.
MUTHA: In a recent blog post on DPP, Christinne Rudd wrote about how she spent a lot of time indoors as a child because of her disability, and that equipped her with great ideas for indoor activities that might be useful for families in cold climates. The post demonstrated how looking at disability from a deficit perspective misses out on what disabled parents contribute to the larger parenting community. Where do you see other examples of this?
KA: My current research on disabled parenting is exploring parenting from a strengths-based perspective. Because we may not have a certain set of options for parenting, like chasing a toddler, we have to come up with alternative strategies to not only keep a child safe, but also happy and content. Many of us plan ahead meticulously. We need to know the layout of a parking lot or entrance to determine if it’s safe for our family in the early stages of walking (and running).
Disabled parents are also often adept at establishing intricate informal support networks. We want our children to have a wide spectrum of experiences. Sometimes that means involving others in the family’s day-to-day activities. These family supports could be other family members, friends, or neighbors.
Families led by a parent or parents with disabilities also seem to talk about diversity instead of avoid it. Research tells us that ignoring differences doesn’t lead to attitudes that promote equality or inclusion. Children of parents with disabilities seem to be more comfortable talking about disability and acceptance of differences than their peers.
MUTHA: Have you/how have you and other DPP parents grappled with internalized ableism? (I went through cancer treatment a couple of years before adopting, and I really had to fight this little voice that told me I didn’t have a right to be a mom if I had health risks.)
KA: I really like the description of ableism as a little voice that we do consistently have to recognize and fight. There are SO many counter messages to parenting with a disability that our internal ableism seems to disguise itself as intuition at times.
My daughters do not have disabilities and my son does. I see the freedom that my oldest daughter enjoys when she has enough distance from us to be free of the questions and stares from strangers. I worry about whether she will ever want that freedom more than she wants to be close to me. Sometimes I find myself wondering if I should drop her off to a new event and give her the chance to just be herself before she’s the daughter or the sister of us (people with disabilities). With all the confidence that I think I’ve gained and the true pride I know I feel, it’s a terrible feeling. I don’t think I’ll ever escape internalized ableism, but it helps me to name it and, in safe spaces, talk about it.
MUTHA: Where do you see intersections of ableism with racism, sexism, and other “-isms”? How do we make conversations about race and gender more inclusive of ability issues? (And perhaps vice versa.)
KA: There are definitely significant intersections. Sometimes it can feel like an easier bridge to make direct comparisons. I’ve heard people compare the use of the “M-word” (midget), which is very hurtful in our family, to racial slurs. While I see the instant understanding that this comparison seems to generate in some, the cost of the comparison is not worth the shortcut in teaching. We can’t compare oppression, and no one wins the Oppression Olympics!
At the same time, hate is hate. For some reason, people are very uncomfortable associating ableism with hate. Many people immediately make excuses, deny it entirely, or point out how people mean well and just want to help (no matter what the impact is on the individual with the disability). I think the intersections of “-isms” are of the utmost importance for us to consider because they’ve been ignored for too long. Our intersecting identities definitely impact the way we are treated by society and ultimately the resources and outcomes we have access to.
MUTHA: What strengths do you see in children raised by parents with disabilities?
KA: In my interviews with parents with disabilities, I’ve heard them repeatedly describe their children as more inclusive and more accepting of others. I’ve also seen this in my own children and the children of my friends with disabilities. Children of parents with disabilities also benefit from the creativity and problem-solving our families practice because we live in a world that wasn’t/isn’t designed for us. While I see definite strengths, our children are also typical kids in many/most ways. They have their bad days, good days, awful behavior, proud actions, etc.
MUTHA: What advice do you have for parents (of all abilities) for raising anti-ableist kids?
KA: Talk about disability as a natural part of life. Don’t overly emphasize that people with disabilities are “special” or even “inspiring” unless they’ve done something worth that descriptor. Sit alongside your child in the act of challenging problematic portrayals of disability. Question with them why there aren’t more kids with disabilities in television shows, movies, or ads. Help them find words to talk about disability with more ease.
I encourage the use of the word “disability.” This has been somewhat challenging for us because schools seem to strongly emphasize the use of “special needs.” Too often this morphs into “special-needs kids,” which is very different from an intentional use of “disabled,” if we are claiming it in an identity sense. I know this line of thinking complex for children, but these are issues that adults and parents should be thinking through to guide their children to develop mindsets of equality, equity, and inclusion.
Children benefit when parents model inclusive play strategies for them. If they aren’t sure how to play with a child with a disability, give them ideas. Last, as children get older, it’s difficult–but important–to have frank discussions about the discrimination that people with disabilities face. You can talk about discrimination in employment or as demonstrated in the attitudes of others. To foster anti-ableist attitudes in kids, they need to know ableism exists.
MUTHA: Your bio mentions that you are interested in using film to teach and empower people with disabilities. I’d love to know more about that.
KA: I think film and other media is a fun (and more importantly, effective) way to educate others and challenge us to think differently. We tend to lower our defenses when we take in media. This creates an ideal environment to change our minds or expand our perspectives. We definitely need more representations of disability in the media but we also need better quality representations. We need examples of the full spectrum of human complexity as experienced through the lens of disability. There are some incredible disabled leaders in the media industry. We’ll get there, but we need to continue making the need for better/more quality representation known.