For years we were able to sneak under the “disability radar” with Adelaide. She has no major facial or physical characteristics calling attention to her, so most people just thought her low tone and lethargy were a sign that she was sleepy.
But as she is getting bigger and older, her behavior is giving her away. In no way do I mean this negatively, it’s just that I realize now that people can see she is different — which in turn means she is often treated differently. Be it out of necessity or protectiveness, we don’t often spend time with people who don’t already know Adelaide or at the very least her story. For the last five months she was connected to oxygen and often unstable, meaning she didn’t really leave the house unless it was to a familiar place and/or medically necessary. Needless to say, she wasn’t exactly a socialite entertaining gobs of new friends.
Still, when we would venture out, I registered the looks of pity on the faces of passersby as they saw her with the nasal cannula taped to her face. I’d overhear their remarks that they were “so lucky to not have a disabled child like her.” At best, it wasn’t helpful, and at worst, it stung. Still, they were fleeting moments with people that I never needed to speak with or see again.
Now, she’s off oxygen, and aside from seizures, she’s relatively stable, so we’re no longer on house arrest. So when a friend invited me to her artist-friend’s jewelry release party, I found myself able to say yes! I dropped Jackson for a playdate and headed over early with Adelaide. Her mast cell activation syndrome (MCAS) has been really sensitive lately and strong scents can cause her to have a really uncomfortable allergic reaction. I figured the earlier we could get there the better for Miss A’s mast cells. Prior to other guests arriving, Adelaide snoozed in her stroller and I chatted with a friend and the jewelry designer, who, as a result of Crohn’s disease has a g-tube and the exact same feeding pump as Adelaide. Never before did I think chatting durable medical equipment would put me at ease, but it sure did.
As people started to arrive, Adelaide woke and I got her out of her stroller and held her on my lap. I watched as a guest walked in with a baby and I was relieved to feel my anxiety kept in check. I used to have a really hard time being around young children and babies. It reminded me of all the things a neuro-typical baby could be and would be and everything we were mourning (at the time) in Adelaide’s life. Over time, I began to accept Adelaide for all she was and all she could be and those difficult feelings dissipated. After having no issue greeting and chatting with this lovely new mother and her incredibly sweet baby, I mentally gave myself a pat on the back. I have to admit though, that I was completely unprepared for my interactions with other guests.
It was the slight stares that I noticed first. Guests would walk in, scan the room for people they knew and stay just a second or two longer on Adelaide. She was quite awake at this point, but required significant support and wiggled around as she does when she doesn’t want to be held. (Side note: now that Adelaide is more alert, we are learning that she has lots of opinions about cuddles, as in, she is not a fan. Strong-willed does not even begin to describe Miss A.)
I’m holding her, as we are both trying to be social and “normal,” and she’s not having it. Adelaide does not move the way a typical child would move, nor does she open her eyes all the way as a typical child would. I know that of course, but only two other people at this party did. I watch as women walk up to the mom with the baby and talk directly to the baby, asking the baby her name and how old she is. The baby can’t respond of course. Next, one woman sits near me and I introduce myself and begin friendly conversation. I notice that the woman never verbally acknowledges Adelaide, let alone speaks directly to her. I make eye contact with another woman a few feet away and introduce myself; she asks a question about Adelaide but makes no attempt to interact with her directly. The most common initial question I received was “How old is she?”. It would obviously have been impolite to ask why she is “different,” but I can see the questions running through their heads all the same:
She looks mostly normal, right?
But something’s not quite right… I wonder what’s wrong with her?
Does the mom know something’s wrong with her?
I know they were thinking this, because prior to Adelaide, I had all these questions run through my head when meeting other people’s children with disabilities. Before I knew it, I had developed a script: “She’s 3, but developmentally a newborn. She has epilepsy.” With their curiosity quenched, the conversation moved on to other topics with which they were more comfortable. I want to make clear that these were all perfectly nice women that I enjoyed chatting with, but Adelaide’s presence absolutely had a noticeable effect on their behavior.
In recounting this experience to a friend, she asked me how I wish strangers would interact with us. I realized I just wanted Adelaide and I to be treated the same as any mom with a child would be: acknowledge both of us, speak to Adelaide directly — regardless of whether she can respond. Also, don’t be afraid to ask questions! I have yet to meet a caregiver who would rather not answer simple questions about their child’s disability and instead welcome the inquisitive stares.
At the end of the day I’m a woman who is a mom with a child who happens to have a disability. Those descriptors should make us more interesting, not make those around us uncomfortable.
This is clearly a much larger conversation about how our culture views disability, but suffice it to say that I know Adelaide is a kick-ass little girl and anyone who is too blinded by societal norms to see that is missing out.
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Author: Kelly Cervantes