An excerpt from the book, “A Celebration of Family: Stories of Parents with Disabilities”
The following excerpt is taken from Chapter 2, Adam and Kara: Our Road to Parenthood as Two Parents with Disabilities, by Kara B. Ayers, PhD. Dr. Ayers is an Associate Professor at the University of Cincinnati and the Associate Director of the University of Cincinnati Center for Excellence in Developmental Disabilities (UCCEC). She has done extensive research on parents with disabilities. She and her husband, Adam, have three children – Hannah, Eli, and Riley.
Parenting is a dream that many people with disabilities aren’t allowed to dream. There are countless messages around us – both bold, explicit ones and more subversive ones – that tell us we are not ideal people to raise children and that we should look other places for a fulfilling life. My husband, Adam, and I – both people with disabilities – definitely heard those messages and still do. We are fortunate in so many ways that we have been able to chart our own course and define what family means to us.
I was born in Kentucky and my husband in the Cincinnati area. We were born just about a year apart. We both have Osteogenesis Imperfecta (OI). OI causes short stature. We are both little people. The most prominent characteristic of OI, however, is bones that break easier than most. During my childhood, I broke around 75 bones. OI also typically necessitates multiple surgeries to repair fractures, but also to implant metal rods inside the long bones to help them grow straight and prevent break-through fractures. Adam and I have each had more than a dozen surgeries. There is a great deal of pain associated with OI, but also lessons of resilience and grit.
OI is a genetic disability. For most people, who don’t have a partner with OI, there is a 50/50 chance of passing on OI to biological children. For Adam and me, that chance increases to 75% and becomes a little more complicated. To break it down, there’s a 25% chance that our biological child will inherit Adam’s type of OI, a 25% chance my type of OI, a 25% chance a child would inherit both types, and a 25% chance of inheriting no OI. Everyone has different feelings about these odds. Adam and I were most concerned about the 25% chance of double dominance, inheriting 2 forms of OI, because there is little known about these outcomes, but it’s thought that a baby with double dominance would be unlikely to survive.
Any and all decisions around parenting are complicated, but from a quick description of just genetics, it’s easy to see how parenting decisions with disability become incredibly complex long before a baby’s arrival. The nature of my disability has meant that planning is a way of life. I have a deep need to know what to expect even when there’s usually not a model for me to follow and often no way to really know. To prepare for the prospect of parenthood, I looked to other parents with OI and parents with other disabilities to learn from their perspectives. A person’s disability identity factors considerably into how they navigate parenting decisions. Our family views disability as a key part of who we are – both one to celebrate and one that brings unique challenges. We see disability as a culture and as an inherent part of human diversity, which we believe strengthens society.
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