The stories of faces

There are already two children, probably around 2 (a handful of months older than my son), playing with the toy kitchen in the library.

Jack is shy at first, pushing his body back against me as he watches, eye trained on their busy fingers banging pots and pans, pulling open the oven door and occasionally pulling on each other’s shirts.

The mom looks up, friendly, as I fumble through signing that it is okay for him to go explore, that these are nice new friends that he can meet. “Do you sign with him?” she asks.

I nod – and hesitate, before plunging in without drawing breath that since we don’t know yet about how he will prefer to communicate, whether his hearing loss (the one missing ear makes it conductive rather than what they call ‘simple’ deafness) will mean he prefers signing or speaking.

She smiles, genuinely interested. It turns out she was a speech language pathology major at Baylor. When she asks what I do, I tell her I study the philosophy of disability.

The stories of facesI feel the rest of the words in my throat, afraid they’re too much too soon:

I study arguments about why disabilities are not intrinsically bad – why they’re things that make a life different. I study ways to think about disabilities as mere-differences (this phrase I owe to the philosopher Elizabeth Barnes), I study ways to understand the human heart and mind and body as something capable of being created mysteriously and I argue that we shouldn’t think that someone’s being disabled means they should be pitied.

I don’t say them.

Eventually Jack gets brave enough to pull himself into standing and walk over to try and grab a pot lid. The boy and girl lose interest soon afterward and start running around.

The children’s librarian looks over disapprovingly. The mom and I share a bit of a laugh and slowly we each turn to our parenting tasks and the morning slips by, minute by minute.

Two months later, in Target, Jack and I are walking towards the diaper section when a different mom with two girls passes us.

Jack is in the midst of trying to hold the small red basket by himself. It’s too big for him, so he laughingly stumbles and then whimpers for me to pick him up.

I sling the basket over my shoulder and hoist him up so that he can survey the bright lights and the big white and red Target dog at the entrance.

The stories of facesThe mom and I exchange glances, and she doesn’t smile back.

Just as they are level with us, I hear one of her daughters ask a question I know too well: “What’s wrong with that baby?”

She doesn’t really try to shush them, from the little I can tell as they walk by. She keeps pushing the large cart with the girls riding in two big bucket seats in the front, and I hear a few words – “medical,” “why?” and “stop” but I don’t know what they’ve said.

I don’t know where their conversation has drifted or if as is the way of many conversations the girls have noticed something else extraordinary and are investigating it.

When I look back at Jack, his eye is locked onto mine.

It won’t be long, I realize again, until he will have his own questions for me.

My son is built uniquely. This is my final answer to those indirect questions, to the thousand “whys” I see flicker across other faces.

The stories of facesMy son was created this way.

Since before Jack was born, I have been asking about what we learn when we learn that a person has a disability. When the girls see Jack in Target, what do they learn about his life? What do they learn about his flourishing, about his challenges?

It is easy to think that when we learn someone has a disability, we learn that someone’s life is more difficult. Perhaps we think we learn of hardship, or harm, or overcoming. Perhaps we think that we come to know that the person begins in a worse-off place than another person who does not have the disability.

But I do not think it is that simple.

When the girls see my son in Target, I do not think they’ve learned something about his well-being merely by recognizing his disabilities. I do not think they’ve discovered that something is intrinsically “wrong” with him or that his life is intrinsically harder.

A life is contextual.

When I see that someone is a parent, do I learn that their life is intrinsically worse or better?

When we learn that someone is from South Africa or Texas or France, do we learn an additional fact about the quality of life that they have?

I am not suggesting that we never learn anything about the quality of a person’s life from learning facts about them; but I do want us to think about how the context of the facts, the way facts are bound up with other facts and with the lived experience of that life, should complicate the picture.

Jack can tell you what it is like to live with his disabilities. The disabilities themselves don’t speak.

The stories of facesEven as I write this, I feel the pressure to explain his condition to you, to make it sound understandable, to make it something you can share in either by shrouding it in medical terminology you could go look up or by surrounding it with emotions or life lessons for the curious.

I feel a requirement to satisfy curiosity in readers or in children in libraries and grocery stores and church pews.

Curiositas, the Latin root of our curiosity, was understood to be a vice by medieval philosophers and theologians.

Aquinas writes in the Summa Theologiae that there can be sin in the desire to learn the truth (which sounds so odd, doesn’t it?) because it can be an inordinate—a disordered—love.

Among the ways this happens, he writes, “When a man desires to know the truth about creatures, without referring his knowledge to its due end, namely, the knowledge of God.”

We so often encourage curiosity in each other, especially in children. “Be curious!” we say, “ask questions! Seek out answers!”

We have forgotten what medieval thinkers kept at the forefront of their minds: every longing, every desire, can go wrong if it becomes too expansive, if it starts to cloud or obscure the wiser thing to do or say.

Curiosity can run away with us, and curiosity can hit others.

Curiosity can find me and my son in the aisle in Target and leave us staring at each other in its wake.

That book is in the Target where the daughters and their mom walked past us.

When we walked through the book aisle he pulled down coloring books and looked up at the bright fluorescent lights and he laughs his wild giggle.

The stories of facesWe leave Target and come into the sun and wind.

Next time I want to stop her and tell her that my son can hear what her daughters say.

That my son’s face requires no explanation, that his name is Jack and he loves to carry the red basket even though it’s too heavy for him.

You can say no to constant busyness.

To lead your family with peace, you need to know your NOs and YESes. But what are they?

Like Your Life can help you figure them out.

If you feel like the chaos outweighs the calm in your home,

first, take care of the basics.

You already know what to do—you just need to do it.
Focus on just ONE thing at a time, and you'll conquer the overwhelm.

 

15 Comments

  1. Stargirl

    This is beautiful. I love thought essays rather than how-tos or numbered lists. So much more meaning. I studied communication disorders in college (I’d like to be an SLP), and worked with two girls with Down syndrome. Though they were not my own children, I felt the same “curiosity” from others when out with them. Worse, people would baby them (9 year old girls!). I don’t mind the curiosity from children. They are just learning about the world, and can be taught that disability exists but is not the whole story. It’s the way that adults respond to children’s questions that bothers me. I try to remember that it’s usually not malicious. We need to continue to educate and change the narrative society uses for people with disabilities. People with disabilities have still been left behind in the human and civil rights movements. Thank you so much for writing this, and thank you to Tsh for accepting this essay!

  2. Mama Rachael

    This is beautiful, and convicting. I’ve let my curiosity b/cm a disordered desire at times, I’m sure. And I’ve seen others do it too. Thank you, Hilary.

    • Hilary Yancey

      Thank you, Rachael. Your words are such an encouragement.

  3. Beth

    I appreciate how beautifully you’ve expressed your thoughts. I also sense a bit of loss or sorrow on your part as you get used to parenting a child that is “different.” I don’t mean this in a negative way or that you sorrow for the difference itself (I don’t mean that you would want your son any different that he was perfectly made). But parenting a different child will mean you will always have to deal with curiosity – and to be honest, that is difficult to do. My two boys (3 and infant) are the only white children in our entire neighborhood. They have blond hair and fair skin. Everyone else is darker skinned with black hair. Our family has lived overseas for almost six years. I can NEVER go out with my kids without getting curious comments. A year ago my oldest didn’t realize he was any different than his peers. Now he knows. None of his peers speak English well and he doesn’t speak their language well (we were Stateside the past 7 months and he lost most of his second language). It is hard. And it’s hard helping him learn how to deal with being different. Even if he learns to communicate fluently he will ALWAYS look different and will receive comments about it. As a parent you have days where you can handle the curiosity and it doesn’t bother you as much, or you have a good conversation with someone who quickly understands the person behind your differences. Other days you just wish people would leave you (and especially your kids) alone. I can’t really blame the people (especially children) around us. We ARE different. And people are curious. Yes, better manners would be nice sometimes, but I need to realize they are different too. They haven’t learned that it’s rude to stop and ask questions or to point or to take pictures. Should I judge them for their differences while asking that they don’t judge me for mine? I think it’s important to give ourselves the grace to allow ourselves be frustrated sometimes when our kids or we are treated differently because of externals but also to give others grace as well. I completely appreciate your beautiful frustration, but gently warn that it probably won’t get better. People will always be curious and some will be rude. Just know you are not alone – Jack is his own unique person but having to deal with unwelcome comments are not unique. Grace to you!

    • Hilary Yancey

      Thanks for your comment, Beth. I appreciate your thoughts here. I certainly don’t expect that the curiosity will go away completely, nor even that it should—my aim in this essay is to reflect on a tendency I think we have to assume that all curiosity, in any context, is good or appropriate. I think that should be challenged. In the medieval way of thinking, there is a counterpart virtue to the vice of curiosity, called studiositas or studiousness. What characterizes this virtue is that the love of and desire for knowledge is properly ordered towards the end of loving God and neighbor. The desire to know doesn’t run away with us, which is what I think can happen when we don’t attend to our curiosity.

      Differences are noticed across a wide variety of features, though your sons’ experiences seem unlike the experiences I’m writing about in this way. From what you described, your sons know that they are different, but that difference is not primarily characterized as being bad, or wrong, or implying that they are worse off. If Jack was noticed as different, without the implications that come along with it (as I think happens often in cases of disability), I think they would be more similar. But questions expressing curiosity about my son are often loaded with implications of its being a bad thing – what happened to that baby, what’s wrong with him, why doesn’t he have two eyes, etc. I don’t know whether the same holds true in your context, but I did want to note it as I reflect on your comment.

      I certainly hope and pray that in my interactions with others I show grace; this post is aimed at critically reflecting on the experiences and what we might learn about curiosity through that reflection.

      Thanks again for your comment and for reading. I appreciate the chance to think through these things together!

      • Beth

        Thank you for your reply! In my sons’ situation their difference is not (usually) considered a bad thing but sometimes they are treated badly because they are different. We went to a major historical site with my firstborn and you would have thought he was one of the attractions. Probably a couple hundred people approached him because they wanted his picture. Just today my son turned to me and said, “I don’t like [our host country’s] people.” Why? because a man was pestering him to pose for a photo. Often people (not everyone) talk over him or get in his face and treat him more like a zoo exhibit than a little boy with his own personality. Added to that, he has a major food allergy and can’t eat at many restaurants – so I am familiar with the conversations that run something like, “Oh, that’s so hard! Tell me about it!”
        I guess I don’t see general curiosity as having the same connotation as was implied in medieval times. I see it as a normal, natural part of mankind. I try (it gets tiring) to use the start of a conversation to direct that curiosity towards a greater knowledge of God and love for others. If I feel like the person wants to see my children as such – children – and not just objects, then I can help them do that. If not, and they just have morbid curiosity or just want to excite their own sense of learning or experiencing something new then I shut the conversation down and move on. I would guess that you get more of the latter than I do. In either case there are days when I just wish people would realize we are just like them and interact normally. But it’s not going to happen, so I try to take each initial interaction as open curiosity that has a chance to be molded into the kind of knowledge that will help them love others and God better.

        • Jessena

          Hi Beth, a challenge about centering the conversation toward your own experience when reflecting on Jack and Hilary’s experience is that you could easily change your location and context and then viola no longer “different” or unique. The curiosity your children experience just simply not the same.

          Hi Hilary, I truly appreciated reading your thoughts! Your quote, that curiosity can hit us, wrecked me!

  4. Maryalene

    I agree with your view of disabilities. I always say my daughter has Asperger’s, but there is nothing wrong with her. Just because someone is different doesn’t mean he or she is broken.

  5. Jeannie Prinsen

    I’ve been following your family’s experiences for some time now and always come away from your and Preston’s writing having been moved and challenged. I am a mother of 2 autistic teens (my son has seizures and other developmental issues as well) — and no 2 children could be more different than they are from one another let alone from anyone else! I am really intrigued by the mystery of difference and was very interested in your comments both about the philosophy of disability/difference and about curiosity. I’ve had a sweet old lady say to me at church “Was he brain damaged at birth?”and another woman (total stranger) look at him and say “Autism?” and, when I nodded, proceed to tell me about the CURE she was famous for. (I don’t think we’re allowed to say WTF at our church, but I really should check on that, for next time.) Anyway, I really do appreciate your post and the grace with which you share your story and respond to the curious and clueless among us. I’ve been the latter too at times, I’m sure.

  6. Jen

    Beautiful story. I have a 3 year old son that is startling to notice people different than him. What would you prefer a parent say in that situation? Something like I’m not sure honey, let’s ask? I don’t know what to do in those situations as he’s my first. It’s a great learning experience for him to notice accept other’s differences but on the other hand I don’t want to inconvenience or embarrass (perhaps) someone? I would love to hear what would make you and your son feel understood in moments like those.

    • Hilary Yancey

      Hey Jen! Thanks for reading and thank you for your question. It’s such a good one. One thing I would love is the chance to introduce Jack to the kids who ask – so maybe something like – “why don’t we go say hello and introduce ourselves and you can ask him or his mom?” Or if that wouldn’t be comfortable for someone, I would also be grateful for a quick aside from the parent – something like, “my son or daughter was asking about your son’s eyes. Would you mind if they asked you?”

      I don’t want to speak for all parents by any means – but these are just a few things that come to mind!

      Thanks again for your question.

      Gratefully,
      Hilary

  7. Julie-Anne

    I really like that last bit.
    I have a facial difference and at three years old I had a fat lip and a bright red scar (I am probably unreasonably excited about how so very good Jack’s lip looks, btw. )
    I don’t remember this, but I obviously heard what people said about my face, because people used to say hi to me and I would turn my back. That makes me sad for little me, but I wonder how it would have been if my mother was thoughtful in her responses and reinforced that there was nothing wrong with me at all. It may or may not have educated the curious, but it would have reinforced my sense of self as real and whole and OK. Hmm.

    • Hilary Yancey

      Thank you for sharing a bit of your story’s Julie-Anne! I am writing in part to better understand how I might equip Jack to see himself as fiercely awesome, including the ways he is different. Thank you again for reading and commenting.

      Gratefully,
      Hilary

  8. Clifford Moore

    Thank you for your intelligent, passionate and vulnerable thoughts. As I was reading and feeling a flurry of emotions, I was reminded of another “sin,” the sin of overly empathic commenting. I struggle because even as I write this I want to share my feelings and I instinctively realize that my sharing would be more for me than you. My thoughts and feelings presume too much, as if I really know what you and your son feel and think. I’m reminded of a time when I was young and I saw a young man with a Mental Disability in the mall, it almost brought me to tears. I remember going home and asking God about the pain of the world and why he would allow such struggle and pain. I had a strange moment, as if God said to me that the young man in the mall was happier than I was. Immediately my mind went back to the memory and sure enough he was smiling away and I reflected on how utterly miserable I had been for some time. It was a powerful experience.
    Thank you for tugging at my heart and brain.

  9. Annie Barnett

    Hilary, thank you for sharing your experience and perspective. I’m so grateful for your voice here today. I learn so much from you.

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