January 16, 2014

View from Here: Parenting in a Mixed-Ability Family

The View this week is from a woman I just recently met and decided I liked right away. Her name is Kara and technically has two blogs. She started at Wheeler Mom, but is currently focusing on her family's adoption journey at Roll You Home.

Do you get the hint as to an aspect of her life from those blog titles?

I'll let her tell it.

Parenting in a Mixed-Ability Family

Around 3 years ago, our family was featured on the cover of New Mobility Magazine. Within the article, I bemoaned my failure to find one of those nifty car decals that represents my family. My husband and I are full-time wheelchair users. Our daughter is now an imaginative, dramatic, sweet, and sassy 3-year-old who will gladly talk to you for hours about Ninja Turtles, princesses, or her feelings on feelings. I’m trained in clinical psychology so it’s safe to say she is WELL informed about her emotions. What I didn’t expect was how she would start to inform ME about them-on a daily basis! She routinely tells me she’s excited, frustrated, or SO upset with me! We’ve mastered the naming of feelings-now on to the taming!
Back to the car decals…I can’t say I’ve spent a great deal of time searching. However, with a little effort, victory is mine! As evidenced by this trend becoming more inclusive, the world has obviously evolved…in some ways. In the end, I decided that I’m not much of trend follower. I’ll continue to allow the coating of snow sludge to adorn our van instead but I’m still glad to see images like this available.

Even 3 years ago, I knew that blending our unique family into the fabric of society would be more difficult to finding images that represent us. We are a trans-ability or mixed-ability household. My husband and I have Osteogenesis Imperfecta (OI). OI is a bone condition. It’s one of more than 200 types of dwarfism and results in bones that break easier than most. There was (is) a 75% chance that our child would have OI. To be technical, 25% she would have my type of OI, 25% she would have Adam’s type, and 25% that she would inherit both types-which typically doesn’t result in a viable pregnancy. We were most frightened about option 3. In the end, Hannah was born without OI. She does not have a disability.
As I’ve communicated this news or revelation in person over the years, I’ve found it far more comfortable to do so online. It lets both of us off the hook. To be completely honest, I’m not entirely sure HOW I want you to react. I, too, am happy that Hannah does not have OI. Here ablebodiedness is just as much a part of her as my OI is a part of me. There’s certainly nothing shameful about NOT having a disability and I would never want to change anything about her. Still, it stings when people let out a dramatic sigh and proclaim her a miracle. She IS a miracle to us but not because she is simply without disability. So, it’s definitely complicated and I see that. In an ideal world, I suppose I wish people would ask and respond just as they would to any other of her numerous traits.
People who celebrate the news that Hannah does not herself have OI are also missing a key experience of her life and that of our family. Hannah is still very much impacted by disability. In many ways, our family has OI. Of course, there are the negative aspects of disability that creep into our lives. Hannah has already noticed people stare. She’s asked why her classmates “talk to me like that” as even preschoolers sometimes have a disgusted tone in asking their questions. As a family, we sometimes take a little longer or go about things a little differently than others. Many of the parts of Hannah’s disability experience though are positive. Like any culture, we read books, attend events, and spend time with friends who share our membership to the disability culture. Hannah *LOVES* wheelchairs. She is a superstar at navigating chairs and cannot wait until she can start playing the inclusive sports programs her Dad leads.

Hannah has asked me a few times why she doesn’t have a wheelchair. It’s a part of typical development to mimic parents and in some ways, expect to grow up to be like them. Our family has worked so hard to develop and express a positive identity associated with disability (often against the stereotypes held by society) that Hannah has absorbed that message loud and clear. As she grows into her own body and creates her own identity, I also want her to know and feel that same type of pride. I found myself involved in one of our many deep, bath time conversations last week.
Hannah: “I just think wheelchairs are cool and I want to have one like you.”
Me: “They are cool. But lots of things you do are cool too! I loved the way you JUMPED while you were counting to ten tonight. It’s cool that you walk and it’s cool that I don’t.”
Hannah: “Yeah…[long pause] but I really think we should get a cat. I would name it Kitten Kitten and take care of it and Obie (our dog) would promise not to eat it.”
Obviously, my explanation was far too long but we’ll keep working on it together! As a child, then a teenager, and even during the majority of my adulthood as a woman with a disability, I’ve had very few models of parenting with a disability. All parenting though is largely trial by fire. After spending years finding things I love about the disability culture, I’m starting to appreciate parts of Hannah’s identity that I’ve never noticed before in the general population of nondisabled people. It’s not a betrayal to my own identity to recognize her amazing coordination and how she can take an incredible fall and just keep on keepin’ on. It’s OK to notice how she can just blend in as she joins a group of peers and to celebrate as she grows like a weed.

Developing pride as an individual in a majority culture is not akin to negating the minority one. Hannah is a living example that my cultural identity, too, is not about us versus them. I’ll admit I sometimes become frustrated with actions of some in the nondisabled community. I think twice before I lump everyone into that lot because my daughter-my heart and soul-is also a member of that group. In some ways, we hope to allow Hannah to see the best of both worlds while also appreciating the challenges experienced by both. She’ll be prepared for her own bright future in a world that is made all the more beautiful and complex by its diversity.
*Guest post by Kara Ayers. Kara is a disability advocate with UC UCEDD. Please “LIKE” their page to stay informed about news that affects the world’s largest minority, people with disabilities and their families. Kara is also blogging about her family’s adoption journey at www.ayersadoption.com. Follow her on Twitter at @DrKaraAyers.

"A world that is made all the more beautiful and complex by its diversity."

Love that. I hope this is what we are all showing our children.

Please leave Kara some comment love and then check out her blog!

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