The two little girls next door ran towards me as I watched my son ride by them on his truck out on the street last night. Nearly out of breath they asked, “What kind of sickness does he have?”

A searing red heat flared up in me. I never know exactly what to say in these situations, but I do know enough not to answer right away, to take at least one deep breath while the adrenalin rush subsides. When I get in full Mamma Bear mode I want to lash out at these girls who I had never even met, but from experience some voice in my brain reminded me that while tempting, shaming them would serve no purpose than to leave me feeling like a jerk later on.

After a moment, I said, “Well, he doesn’t have an illness, but he does have a syndrome.” (Not my best response, but they have been way, way worse, let me tell you.)

They asked what that meant. Shifting gears away from the genetics lecture, I told them that just because someone is different doesn’t mean that they’re sick. And besides, we’re all different in some way. “But we tried to talk to him. We asked him what was wrong with him…” (seriously, doesn’t anyone teach their kids manners anymore?) “and we could hardly understand what he said. He just talked about the bus coming.”

“Alright, buddy!” I thought to myself. You know you’re not a typical mom when you’re psyched that someone can understand your child, even if it’s his response to a conversation he had with someone else three minutes earlier. And then my heart broke realizing that he was really trying to have a conversation with them but that they couldn’t connect.

We hobbled along through the rest of the conversation, me pointing out that we just moved here from the US and that my son, like the rest of us, was still mixing Swedish and English words, tossing in that weak platitude about everyone being different once more like a Hail Mary pass, before the girls had had enough and returned to their part of the street.

The fire that flares up isn’t directed at these girls. Possibly a little bit at their parents, I’m ashamed to say. But mostly at the reality that my son is growing up different in a world for which differences of many kinds means “sickness.” Where different means “I don’t have to see you as a person.”

I’m not suggesting we shouldn’t notice difference, that we shouldn’t be curious about it, try to understand it, or even to appreciate it. That’s not diversity, that’s denial. But what if we could look at others and notice the similarities first? “Here is a person,” we would say. “She has loved like me, bled like me, struggled like me, laughed like me. And by the way, her hair is curlier than mine.”

The fire isn’t just an anger. It’s a sadness that my son is growing up in a world in which the main question it is asking him is “What is wrong with you?”

What will it take for this to change? How many years or even generations of retail, one-to-one conversations will we have to have? If last night is any indication, we will be waiting a long time. Is there any way to speed this along? Where do we find the energy and courage to keep at it, when it would be so easier to go inside and never come out to play again?

Published by Cristin Lind

Facilitator, consultant, speaker for better health and care through patient-professional partnership. Passionate about helping change agents build courage and agency. She/her.

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  1. So you ask:
    What will it take for this to change? How many years or even generations of retail, one-to-one conversations will we have to have?”
    My reply:
    It will take what it takes. How many years?… as many as you have.
    Social enlighten comes when the opportunity presents itself. If we are lucky it can come in our youth. We are more open, pliable, teachable, when we are young. I think the two little girls on your street are lucky. Lucky to have the opportunity to get to know thy neighbor, and if you can teach it… to actually- “Love they neighbor.”
    That’s what was taught/modeled to me by my parents. But maybe I was lucky to have them, and they were lucky to have learned this old biblical principal. Love they neighbor. (MARK 12:21 King James Bible … Thou shalt love thy neighbor as thyself. There is none other commandment greater than these)
    During the deinstitutionalization of the 70’s a house four doors down was sold and became “group home” where 6 adults came to reside. Charley and older gentleman, became drawn to our big busy family. He would walk the block and stop at the top of our driveway and looked in at all the bustle that thrived in our yard. Pets, gardens, laundry hung on the line, five kids and their friends, hopscotch drawn in chalk, and someone always shooting hoops at the net nailed to the gable of the garage.
    My parents always talked to him even though he was non verbal. They simply took interest. If Charley appeared at the end of our driveway during cook outs (and during the summer we always cooked out) they invited him to eat with us. I was afraid of him at first. He walked awkwardly, didn’t speak and had dozens of political and social message-buttons pinned to his shirt or jacket and although he lived in our neighborhood he was not attached to a family. He was .. different.
    My parents welcomed him as openly and as warmly as they did when the Mozzicato’s moved in next door. They spoke mostly Italian and their home always smelled of garlic and “red gravy” They grew strange things in their garden like parsley and basil. They were different too. But we lived –“ Love thy neighbor”, so we found them interesting and got to know them. I was afraid of them as well. They spoke loudly and sternly in Italian… a lot! And they pinched me on my cheeks… a whole lot!
    I learned that the” Love thy neighbor” thing was not about inclusion, or acceptance pre sa. It was about community and who lived next door and what did they like, dislike, what strange customs did they have and why. What connect us, was the mere invest of Love thy neighbor.
    Your two little girls… you gave a little and took a little. That’s what it takes, Give a little take a little and find the glory of Love. (as in love-your-neighbor)
    Not sure this link will come across but here is a song for you.
    You know all of this. You live it and you are a good neighbor. A good teacher. A good mother.
    Don’t fret the journey. You’ll be fine.
    I miss, miss, miss you.
    And I love you. XOXOX

    1. Lauri, thanks for your response. I’ve been mulling it over since you wrote and thinking about how that’s the crux of it–what I really want is a “love thy neighbor” world. Not really anything to do with special needs, just about humanity. Now that time has passed, I can see the whole event in a different light and appreciate how the girls gave us an opening, how they simply tried to connect. I will have to continue to work through whatever my own stuff is that makes me freeze in these situations and see it not as a threat, but as an opportunity.

  2. Dear Cristin,
    I “went inside and didn’t come out to play” for years. I drew a protective box around myself where I could look out but no one could see inside. It was very isolating. It was not really until my mid-forties when I got involved with the disability movement that I really began to learn how to talk to people about my facial difference. I think that learning how to do this, and even laugh or joke about it, at a much younger age would have been a lot more helpful than all the plastic surgery. That does not mean it is easy, and I still struggle with this today.

    I believe that basically young children are curious and just trying to make sense of the world around them. They can easily learn to be mean, but it does not sound like that was the intent of the two little girls you wrote about. With older kids and adults it is different, and people need to learn when and where questions might be asked if at all. But I also think it is our job to think of some short, factual responses – and teach them to our children as best we can. Then I try to change the subject and engage the curious person in a conversation. I think your explanation about being newcomers and still mixing up the languages, and that we are all different, just as we are similar in many ways was right on.

    Emily and I have just read a book by R. J. Palacio called, Wonder. It is written for kids around 9-13, is contemporary and takes place in Manhattan. It tells the story of a boy, August, who is entering a new school in fifth grade. It happens that August has a pretty severe facial anomaly and looks very unusual even after many, many surgeries. Emily and I both thought it was a great story the way it follows him through the whole year, making new friends, dealing with teasing and bullying, and coming out on the top in the end. It is told in the voices of August, his friends, his sister and her friends. He has a great family and some great support from his teachers. I don’t know that Gabe would understand it, but I think Dagny might really like it. The tag line is, “It’s hard to blend in when you’re born to stand out.” It has a lot to say about being kind, has won a lot of children’s literature awards and is being used by some schools and libraries in anti-bullying campaigns. If you want a copy and have trouble finding it, let me know and I can send one.
    Carolyn T.

    1. Imagine that I have to move thousands of miles away to learn new things about you. Sharing your experience about the value of a shift in attitude versus intervention is enlightening. You have always been a role model for me in terms of what it means to invite connection with grace.

      I have heard about Wonder. I will definitely have to get it. Maybe it’s even translated into Swedish, who knows!

  3. It is often a sad world for a child who is “different” to grow up in, we must teach all children acceptance, compassion and understanding in all things, then they grow up to be adults who have this ability. I have encountered many children whom I hope have been just curious about my child and hope that their parents have helped along this difficult path of acceptance. The real anger and sadness comes when a person has reached adulthood and they make no effort.

    1. Thanks Debbie. You’re right, the kids were just being kids, and now I can see that they were actually trying to connect. I can also appreciate that if not for my son, I might not have been the most celebrating person either. I often reflect that that is one of the greatest gifts this experience has given me–the chance to practice and enjoy compassion.

  4. Those are some of my lowest moments… I share your frustration at the world’s lack of understanding and humanity, but most painful for me is how raw this all remains no matter how much I do to acclimate.

    1. I too find myself fascinated at how difficult it is to “work through” this. My visceral reaction is so intense on this one thing even though I’ve changed a lot of other reactions. Maybe I never will. I am trying to simply get curious about it and cut myself some slack. The feelings come from a place of love and protectiveness, though ultimately they will prevent me from helping my son share himself with the world–in those moments of real terror and fear, I shut out the opportunity for connection. So let’s keep trying to soften, but be gentle on ourselves even when or if we can’t!

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