I never really noticed people staring at each other before I had a baby with half a face (yes, I’m blunt). 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’ that people were talking about my son and the terrible mother who had failed him. Read more about my initial reactions to the news that Harry had been born with Goldenhar Syndrome in the moment that life changed forever.
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 infants!). 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 (or simply interest) you too.
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 amputated 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 absolutely guarantee that 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 where 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. In the same way that cars slow down to rubber neck at a collision on the opposite side of the road. No-one is hoping those passengers have died, it’s the very opposite in fact, but we all have a morbid 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.
This simply has to be one of the most under rated tools of defence that we have. A smile in the direction of a staring pair of eyes will have one of three 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 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 is that 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…
Be prepared to answer questions
I am pretty much a walking FAQ these days. “What happened to your boys face?” “Where is his eye?” “Will he have a new one?” The questions have changed as Harrys 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 and its not healthy for anyone. 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 them.
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 Harrys 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.
This is a tough one and 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 that I rehearsed at home. Yeay for preparation! Sometimes people scurry away but often they will chat for a little while and leave us a little bit more educated than 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 favourite 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 that 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.
Don’t go looking for it
This one is more proactive than reactive but from experience I know that I used to leave the house expecting people to stare. I think now that I almost eyeballed them 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 need 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.
Notice the times when you are a starer too (Yes, you do it too!)
Oh the irony! I would 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 friends 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, its 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!
If you would like to read the first chapter of my book, click here for a free download or here to purchase the book which is out now with brilliant reviews!
Charlie you are such an inspiration. I’ve watched mr tumble with my twins since they were born it has helped them so see disabled children as being just the same as the whilst understanding that everyone is different to some extent which makes me so proud. Educating kids is so important
I think Mr Tumble is a brilliant show for that exact reason. Its so important that people see the person and not just the condition or disability but it can be hard at times. Programmes like that, aimed at young children are fab because they will just grow with the knowledge that everyone has that ‘Something Special’ about them 🙂 xx
Me again! (Sorry!) When my baby son had his eye removed due to cancer (in 1993), he was discharged from hospital the following day and we travelled home on the train amid stares from various passengers who clearly thought we’d been beating him up! His eye socket was swollen and black and blue as if he’d been punched, his head was bruised in 3 places where they’d had to take blood as they couldn’t “find a vein” in any of his arms or legs as normal.
This feeling recurred when he was learning to crawl and judge his spacial awareness around door frames etc, when the left side of his face was frequently bruised.
I had an almost overwhelming desire to take him out in public more than necessary, almost as if I was asking for a confrontation! Unlike you I had no self-retraint! I had all the “answers” primed but people didn’t ask many questions and give me an opportunity to respond in a helpful manner.
You are truly an inspiration and if I had my time over again I’d learn a lot!
AwwW Sally I love how fierce you were on getting your son out there into the world! Hes very lucky to have you for a mummy. And thanks for your lovely words. I know we all deal with things differently but I hope to help others see that a different life to the one they planned can still be a brilliant one. C x
Hi Charlie. I’m only just stumbling on your website for the first time. And this is the first post I’m reading but it’s so good to see how you’re educating others from your perspective and teaching yourself in the same way. I love your style of writing, from reading, I’ve gotten to like your personality without even meeting you…Lol. Good one Charlie.
I love this comment! Many thanks. Glad you’re enjoying the blogs 🙂
Do you also have tips for rude comments? Lol!
& like your friend, I too will admit to staring because of ‘chair envy’!
Haha I think’chair envy’ is a real thing having spoken to other parents! With regard to the rude comments I dont tend to have so many as Harry looks so different so people who are clearly tempted to pass judgement on me tend to bite their tongue. But I’d always say ‘he has autism and if you asked before you judged you might learn something’. I dont agree that being an arsehole back helps but I do know how tempting it is at times. Cx
I love your advice, I’m going to try and apply this to my situation, as although it’s different in that it’s me that looks unusual(due to a congenital hormone imbalance that’s affected my outward appearance) I get alot of stares and have even had strangers actually comment on my appearance. It’s very hard not to be affected by what other people do and think, especially when it impacts how you live your life and how you feel about yourself. But reading your advice has been helpful and it makes alot of sense.
So glad it helped. All I would say is that you are as important and precious (more so in many ways) than anyone. Sending much love from our altered life to yours C x
Great tips , great mum you are! It will help me a lot.
I’m really glad! Many thanks C x
Hey I have a disability and people stare at me all the time. It makes me kinda upset and uncomfortable ?
I hope that you are able to use some of the tips here to help a bit C x
I get it too but I am still learning to cope with it but its hard especially when there is hate involved (I am muslim) and on top of that my face matches Hollywood stereotypes who blows themselves up and hijack planes. You are a strong women, I hope your children would grow up to be very good human beings. Peace.
That must be so hard and I’m sorry that you experience extra discrimination. It says more about them that it does you but I know it doesn’t always help to know that C x
Stumbled upon your post and I wanted to say thank you for writing this. My daughter is a vivacious, friendly, energetic preschooler. And she has recently been diagnosed with Tourette’s Disorder. I am new to all of this and still very much in the anxious and protective mama bear phase. However your post has made me realize that I need to mentally prepare myself for the stares, smile more, and go about my business as usual because really, why waste time on ignorant people? I, too, have been guilty on several occasions of rubbernecking or staring discreetly at someone who seems different. We are curious creatures, but most of us don’t mean harm, and I need to remember that.
Hi Anastasia and thanks for your comment. I can already tell you’ll be fine as you are able to self reflect and take lessons from your experiences. You will be great, I have no doubt! Cx
Hi Charlie, just read your post, totally inspirational. My 3-year-old wears splints on her legs, she’s likely to need them into adulthood, and I’d like to prepare her for stares, whispers etc. as she grows. Would you say your advice also goes for Harry? How does he deal with these situations (bless him, awesome little man)? X
In many ways, Harrys autism spares him the pain of dealing with the stares etc but a few people have asked this and so I will write a blog in the near future on it and hope that it helps C x
I have never find infants crying uncomfortable but ‘stares’ extremely!
I happened upon this nexus of the internet, due to myself suffering nightmares of staring. My physical constitution is one of a birth defect, called Poland’s syndrome, wherein I have a disfigurement of the left hand and arm.
This is a nice reassurance, to see such a loving mother; my own mother is deaf and has her own needs, and so I was less attended to than this child is likely to be.
That being said, my father is a helicopter parent, and now that I’m older, we have a had a chance to reflect on do’s and don’t of parenting a handicapped person.
One of the primary things that I think would be of greatest help, as you likely have a disposition to being coddling, is to teach your son to be more a soldier to the world. I was told from a young age to be careful in the way I crawl, and was met with tear-stricken eyes when my father saw I had rugburn from the way I crawled.
I was constantly told to be careful, and to this day I live a very coddled life, with most of my dreams going unmet. I don’t have a job, and I live with my mother at the age of 24. While this may be true to most millennials, please consider the egoic damage to a young man whom is not capable of finding fulfilling work, all the while finding some unpleasant justification that the self has an excuse not to work; All the while dreams become pipe dreams.
on another egoic note,
I have spent many years attempting to court women and have turned kindness to women into a form of science. I have read books on marriage, although, I have a natural disadvantage in this department. While I have managed to have lifelong friendships with several women, I was flat out told to my face “I’d never marry a cripple.” whilst we may critique the bluntness of her, I think that that statement is quite uniform in the experiential nexus of dating as a handicapped person. We are still friends, but It’s impossible I’d ever make more progress.
That being said, i think it’s hard to realize as a parent that you have a natural inclination and sense of judgement. There is a distinction between being protective, being healing, and being supportive.
To heal one must have no judgement on the patient. To protect requires a different responsibility and requires judgement. and furthermore, tough love and realizing that your son will have a very different personality than anyone else, and be shunned by some, if not many, that requires less of a gentle touch and more of tough love.
In closing, bear strong witness to the natural ego of the child, and focus on talents that the child has, and make sure to prepare them for hardship.
Unrequited Love was always the gateway to charity,
Sincerely, Jacob Toth
Oh, yes, and tell him to look in the mirror, as well as contemplate, meditate, or pray, according to disposition of parental religion, and talents of the child.
Thanks for sharing your thoughts with us Jacob