Ep. 54: Disabled Adult Perspective w/Erica Stearns

 

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Summary

Erica has been on both sides of the road—she grew up with medical complexities and now mothers two children with medical complexities. In this episode, she shares how this unique perspective has influenced her parenting and given her greater compassion for the struggles her mom faced.

She advises us in touchy subjects like ableism and oversharing while also emphasizing the importance of our imperfect love for our children. This episode is all about the parent-child relationship and celebrates that unconditional love and all the efforts we make on their behalf.

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My Thoughts

When Erica was born, she was rushed into emergency surgery to have a tracheostomy placed. Her mother was told she would never speak, eat orally, or walk. As she went through early childhood breathing and eating differently than her peers, she noticed the different treatment she received. Although this sounds like any other story episode on the show, the guest is actually Erica, herself.

I met Erica on Instagram. I was reading through comments on a post by one of my favorite Instagrammers, Anna Stanfield (she guests in episodes 27 and 28). The post was about ableism in parents, and among the commenters was Erica. She referred to herself as disabled with two disabled children. I was intrigued by this unique perspective and requested a follow of her private account.

A few days later, she accepted the request and send me a personal message. She told me she typically limited her followers to people she knew IRL but was a fan of my podcast and made the exception. We began chatting and she explained that she was in the works of starting her own podcast. A virtual friendship quickly ensued, which led to chats on the phone. When I wanted an adult with disabilities to speak to her relationship with her parents and offer advice, I knew she was the one to ask.

Our conversation was so very enlightening.

I was a bit apprehensive to breech the topic of ableism—the prejudice of people with disabilities— as it can be found in parents for several reasons. A) I feel defensive of anyone accusing me of ableism against my own precious son whom I adore so completely and B) The purpose of this podcast is to bring support and healing to parents. To overwhelm or shame a listener would be completely counter to that purpose.

But I knew this was an important topic to tackle, albeit touchy. I wanted someone to bridge the sometimes-tumultuous gap between disabled adults and parents of disabled children gently. Erica was perfect for this.

Our conversation emanates and celebrates our imperfect parental love for our children. After Erica gave a few pointers in the helpful and unhelpful, we laughed at the fact that regardless of the parenting journey or every effort in the world, our children are guaranteed to find something to criticize in our parenting. It’s completely inevitable.

Recognizing this helps ease the pressure so much. She nailed it when she said:

“However flawed or imperfect it might be, if you lead with love, I don't think you can go wrong.”

That being said, we can learn a lot from how she goes about her own medical-momming. She has two criteria before sharing things on social media (she switched her IG account to “public” shortly after we met). According to Erica,

“I try to ask myself, is this benefiting my children or society and if so, how? And what is the cost?”

I think those of us active in sharing about our children on social media can definitely use that criteria too. It really got me thinking—especially when it comes to my solo episodes.

There are a lot of disabled adults who discourage (to put it lightly) any kind of sharing of our children publicly. Of course, that makes me probably some of you, pretty squirmy. It’s so personal. It’s such a part of who we are. And I don’t think my passion of the healing power of sharing and hearing each other’s stories involving our children is any secret. I was thrilled when Erica addressed this, especially since she has been on both sides of the road. She used to resent her mom for sharing so much about her, but after having her own children, she realized that:

“My mother's story is also my story. Her journey is a part of my journey. It's impossible to separate them. And honestly, I feel like it would be unfair to say, ‘Mom, don't talk about all my hospitalizations.’ Because they were her hospitalizations, too. She experienced trauma from it as well. Her story, my story, it's intertwined forever.”

I really appreciate this reassurance so much. And obviously her viewpoint is unique to her and is not representative of all disabled adults and may not be shared by our children as they grow. But we have to do our best to make the right judgement call and, like previously mentioned, lead with love. And when choosing to share, we can go back to the two questions Erica asks herself before sharing.

One of my favorite stories from Erica’s childhood was how encouraging and confident her mom was in her. She told me:

“She really just always encouraged me to just go out and show the world who I am with my trach—not in spite of my trach, but with my trach.”

I just love this example from Erica’s mom. And as we probably all do, I hope Kimball can someday say the same of me—That I love and embrace every part of what makes Kimball, Kimball and encourage him to do the same of himself. Just like any other person, these kiddos have so much to offer the world in all their uniqueness, strengths, and weaknesses, and we can help them along in realizing that.

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