7 Things to Do When People Stare at Your Child With a Disability

I never really noticed people staring at each other before I had a baby who only had half his face formed. The reaction we got in the early days almost made me a recluse. I was hyper sensitive to every glance and whisper. They may not have even been aimed at us, but I was convinced that they were. I “knew” people were talking about my son and the terrible mother who had failed him.

Over the years I have developed some strategies that make it easier for me to cope with the stares, the sideways nudges, the pointing and the whispering (and even some crying from children). I’m not saying I don’t notice them, or that they don’t hurt sometimes, but I no longer dread taking my son out of the house. Hopefully, they might help you, too.

1. Don’t take it personally

Harry is not the sort of child people see every day. He does look different, as do people in wheelchairs, with missing limbs, with birth marks or injuries. Curiosity is natural. I am not excusing staring here. Some people stare discretely, while others will gawp with eyes as big as saucers. It’s hard not to take it personally but I can almost guarantee if those people were to meet your child or loved one, they wouldn’t stare a second time. They are not staring at the person. They are staring at the condition. Their ignorance and curiosity intensifies that moment when their gaze rests for 30 seconds longer than it should and feels like an eternity of pain for you. But the vast majority of people mean no harm. I equal it to the way cars slow down at a collision on the opposite side of the road — many of us seem to have a curiosity to wonder and stare. It’s not your fault but equally it’s not theirs.  It is not an attack on your child. It is not a judgment of you as a parent.  They simply don’t understand.

2. Smile

This simply has to be one of the most under rated tools of defense we have. A smile in the direction of a staring pair of eyes will have one of these results:

It may have no effect at all. From experience, this is rare. If I smile at someone (usually a teenager) and they ignore me or simply continue to stare, then yes, I want to punch them in the throat. (I said I had developed techniques to cope — not that I was totally immune to the occasional urge for retaliation!) However, more likely people will either feel incredibly awkward and look away (result!) or they feel comfortable enough to then approach you. Yes, I know this is terrifying but bear with me…

3. Be prepared to answer questions

I am pretty much a walking FAQ these days: “What happened to your boy’s face?” “Where is his eye?” “Will he have a new one?” The questions have changed as Harry’s face has evolved, but I still have a bank of standard responses and am rarely caught off guard by a random question. Although, the little girl who pulled my sunglasses off at the park to see if I had one or two eyes a few years ago took me my surprise, and did make me laugh. Once you accept that people stare because they don’t understand what they are looking at, you can pre-empt the sort of questions they will have and you can be ready to answer them. The alternative is feeling a surge of adrenalin the minute anyone tries to engage you in conversation and feeling like your mouth is full of cotton wool. I’ve been there. Take some time to think objectively about the things you would want to know if you saw a child or person like the one you love and get comfortable with answering those questions.

4. Control your self-talk

OK, so in the early days my mind went something like: “Everyone is looking,” “They all think he’s ugly,” “They all think you caused his problems and you’re a terrible mum,” “They’re laughing at us.” This self-talk totally overrode any rational internal dialogue and if I didn’t take a shopping list and a pen with me when I went food shopping then the chances are I wouldn’t buy anything we needed because I was physically unable to think clearly. Self-talk is massively powerful. It becomes the reality we create and it can hold you captive or set you free. Again, I’m not saying this is easy, but working on the things you say to yourself is absolutely crucial to your resilience and mental health. Now, if I find myself in a situation where lots of eyes are on us — like a recent visit to a huge swimming attraction where I knew there would be lots of curious children — I tell myself, “Its natural and fine,” “Just smile,” “Focus on Harry’s happiness,” “A few stares will not spoil our day.” Don’t let the things you say to yourself spiral out of control. Even just being aware of your inner dialogue is a great place to start.

5. Be proactive

This is a tough one and it took me a long time, but by a mile it’s the strategy that leaves me feeling the most successful. When I see children staring now, I will smile back and ask Harry to wave. Or I’ll introduce him. At this point, I usually get all the questions and can use my FAQ responses I rehearsed at home. Yeah for preparation! Sometimes, people scurry away, but often they will chat for a little while and leave a little bit more educated than when they found us. Mortified parents who have caught their child staring or pointing and dragged them off by the arm to be reprimanded are my favorite to speak with. I tell them it’s OK and not to worry. I introduce Harry, and although the parent clearly wants to crawl up their own arse, I know it’s helping their child, so I feel it’s worth a moment of discomfort on their part. Here, the control is mine and let me tell you, it feels so good not to be passive in your own life.

6. Don’t go looking for it

This one is more proactive than reactive, but from experience, I know I used to leave the house expecting people to stare. I almost eyeballed people first, daring them to stare at me and prove me right. Not healthy. If I tell you to count white cars on the road, then suddenly you’ll see loads. The brain is amazing at honing in on what you want it to. You don’t need the starers, but you do fear them, and so the same principle works. Focus on having fun yourself. Just don’t go looking for the stares and whispers or I guarantee you’ll find plenty.

7. Notice the times when you are a starer too (Yes, you do it, too!)

Oh the irony! I hate people staring, and yet the minute I saw other children with facial disfigurements or disabilities, I was all about the staring. Not because I was judging or rude. I might simply wonder if they’d had any procedures like Harry had, or what device they were wearing and how it helped them. My friend’s son is in a wheelchair and often she says she catches herself staring with “wheel envy” at a more up-to-date model of a chair. Like I say, it’s natural and you never know the motives of people when they are staring. There will always be people who stare. Some will be naturally curious, others will be wondering what you have been through, and it’s a sad fact that some will just be plain rude. You can either spend time worrying and wondering, or you can accept that it will happen, be prepared with your strategies and decision to enjoy the day.

It’s always a conscious choice and sometimes it takes practice but if I can do it, anyone can!

Follow this journey at Our Altered Life.

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