I know why you are giving us that look.
You feel bad for my child: Poor little boy. He is so cute, too bad he has some sort of disability, which is clear to see because he is drooling. He can't quite use his hands. He walks a little different. Oh, how sad, that poor, poor kid.
You feel bad for me, too: Poor woman, she has a child with special needs. Her life must be so difficult.
But that sympathetic look you are giving us is making me uncomfortable.
Believe it or not, I do not actually consider either of us worthy of pity. My son may not be your idea of "typical" but he's still an awesome kid. I don't want him to grow up feeling pathetic. He needs confidence, and lots of it. He deserves respect and dignity, hold the pity. Same goes for me. I am perfectly content with this child of mine. He's beyond adorable, he's bright, he's got a huge personality, he makes me laugh, he gives me tremendous pride in his accomplishments—you know, just like any other kid. I'm not saying my life is easy. I'm not saying that I don't cry over what happened to Max. But we have ourselves a good life. A life not to be pitied.
I know, I know: you don't mean to stare at us piteously.
Maybe next time, though, you can catch yourself doing it, stop and just treat us like any other mom and child. Or maybe you could encourage your child to say hello to mine? That would be ever so much more humane than the pity stare.
This post is for the July 24 blogging event People First: Empowering People with Disabilities, sponsored by Bloggers Unite.
I got the pity look the other day when I was carrying my 32 pound 5 year old on my shoulders. I thought.. if only you knew what amazing stuff he has done.
ReplyDeleteNot to mention he is the WORLDS spoilest kid. don't feel sorry for him feel sorry for my debit card
I've written a lot of posts about the same thing. I think this is a common theme with special needs parents. Too often we get the "Oh I'm so sorry! How sad! Poor thing!" I've taken to simply rolling my eyes and saying "He's fine!" Watch him throw an epic fit about not getting his way and then we'll see just how "different" my child is from everyone else's. Just because he's blind doesn't make him any less a child.
ReplyDeleteIn short, good post. I wish more people would realize that our children (and us) don't need their pity.
Great post, great reminder. I got the same stare as a single mother -- "Your life must be so hard. I could never do it." Could anything be *less* helpful?
ReplyDeleteIt's true. My life is really hard. Any stares just remind me of how hard and different it is.
ReplyDeleteI hope "they" don't notice me staring at them, though. After all, what they've got is so foreign to me, too!
I hate the pity look! We were at a small lakeside beach the other evening and Jonah (who is 5 1/2 and walks with a walker, but crawling is still his primary mode of independent movement) was having the time of his life kneeling in the lake, throwing rocks, etc, which, might I add, was exactly what his sister, brother, and the other couple of kids there were doing. This woman was staring at him from a few yards away -- that head tilted, sorrow-in-the-eyes, pity-stare -- and she suddenly said, "He seems so happy. Poor thing."
ReplyDeleteI replied, "Of course he's happy. Look how much fun he's having." I didn't add the rest of what I wanted to say, but I'm sure you can all imagine ...
Great post, and as always, so very true!!
Tara
We don't get it yet, the staring, because Bennett is still so young and looks young his behavior can be seen as just a rowdy 2.5 year old. But it's a'comin'...that much is for sure.
ReplyDeleteI have a great nephew with Turrets and people used to always make mean comments to my niece about why cant she control her child.
ReplyDeleteShe finally had bix cards made directing people to Turetts web site and she makes the people staring, commenting, etc, feel like real asses! I used to love going out with her and watching her in action!
I hate the pity stares!!! Great post, as usual!!! Thanks for sharing.
ReplyDeleteCould be worse - I was once told by someone i knew and liked that I was their worst case scenario... it went like this:
ReplyDelete"I was feeling sorry for myself the other day, going through this divorce and I thought...well, it could be worse, I could have your life, and have to deal with those 3 sick kids."
Gee... great. Thanks.
ugh the pity stare.... i just hate it i have gotten it all my life. Im visually impaired and use a guide dog when im out and about. oh and when im with my family. UGH i could just scream people look at me and the looks on their faces is like you should have kids you cant even take care of yourself. ugh thanks for the post i think im going to write something on my blog now.
ReplyDeleteI had a woman out on her walk stop on the edge of our lawn and actually CHEER Roa on as he moved in his gait trainer. Roa looked at her like, "what is up with you lady? This is just how I move".
ReplyDeleteSocial frustration! Makes you want to wear a sign.
Pity Stare = pet peeve #1! Oy vey! There is nothing quite like the pity stare...especially when you are trying to just have some good quality time with your child without any reminders of anything other than how awesome your child is. I love the way you explain it and I'm glad you posted this. Thanks.
ReplyDeleteJust beautifully written and I could have said all that too! Thanks
ReplyDeleteOK, we need to compile these comments and poll more people for the "stupidest thing that anyone has ever said or done to us or our kid". I hate getting the "I couldn't never do it" either through a look or said outright. You could and you would. So shut it.
ReplyDeleteI too know where you're coming from on this! I was fortunate with my own children, but all three of my step-kids are emotionally disabled. I am grateful for my neighbors growing up - their son had Down Syndrome - and it taught me young never to take pity or stare, only to marvel at the accomplishments these kids make!
ReplyDeleteGreat post. I encourage my children to go and talk to anyone with a disability, child or adult. I tell them it is not polite to stare and everyone is different and they can be our friends too.
ReplyDeleteThe pitty stare stops somewhere around the time your boy gets facial hair. Then it just turns into gawking or a complete unwillingness to acknowledge your existence.
ReplyDeleteEnjoy it while you can. If you can, use it to start a conversation regarding what challenges your child faces and point out what great strides you have made thus far.
I don't love anyone staring at me and mine for any reason (is it the kids or is it that mustard stain on my left boob?), but I have just got to be a bit of a contrarian on this topic, based on a journey of personal experience.
ReplyDeleteI'll take a pity stare over a "Ewwww-Yuck-UGH/why are your kids such effing animals/why is that big one wheezing, whining and screaming/what is WRONG with that little one's ARM?" stare any time. At least with a pity stare, I know we're reaching someone on a level that involves empathy and compassion rather than disdain, disgust and a preconceived notion that assumes I have really shitty parenting skills.
When I have time, which isn't often, and when the little farts are behaving, which isn't always a reliable state, I'll engage those pity-starers in conversation. I'll walk right up with a big old smile like I own the place and say "Hi, couldn't help but notice you looking, here's our story..." Usually they just feel bad for us, embarrassed to be caught looking, and don't know how to express themselves. They don't know what's "wrong" and are curious as hell but don't dare ask. They're trying to process what they see and they're totally obtuse about how their socially inept conduct affects the objects of their curiosity (see, that's THEIR disability--they're too frigging stupid to see how their behavior affects you or your kids).
Since I live in a fairly small community, I've gotten to know a few folks this way, and some of the pity-starers have become waving acquaintances who say hello to the boys at the Walmart, call them by name, and ask them how they're doing. The big mouths also tell other people, so I end up getting approached by friends of the starers who have heard about us and having a little chat and introducing them to the boys. I guess if you live in the big city it's not the same, because you can see someone one day and then never see them again, but in a smaller setting, planting those seeds is a helpful thing. It actually reduces the amount of staring I have to deal with on a daily basis. "Oh, that's just Fee and her two boys..."
I used to have a huge chip (more like an ten-foot unsplit log) on my shoulder about this very thing, I will admit freely. I gotta tell you, though, it just got too heavy to carry around all the time, so I put it down. The best defense is a good attack, I always say, and the "Hi, couldn't help but notice you looking..." approach is way easier than swallowing bile--and feeling BAD--about the behavior of others--throw it back on 'em, I say! Fair warning, though--it was really tiring the first few times I did it, but now I have the schtick memorized (so does my youngest, actually).
Works for me!
I'm a regular reader of your blog. I don't have a special needs child. I hope I don't offend anyone here, but maybe you can writre a post about how we should talk to/interact with kids like Max and Mom's like you. I would love to make the day of a child or his/her family by approaching them in a way that is respectful and brings them some joy. I just feel so stupid when I try to think of something to say.
ReplyDeleteAnonymous, I once did a post on this, will repost here later. You're right, it would be good to elaborate on what people should ideally do. Me, I would most love it if Moms just gave us...money. HA!!! OK, seriously, if moms just gave us a friendly, pity-free smile--you know, the kind moms at playgrounds or wherever exchange all the time. Or just facilitated an introduction between our kids, if their kid is staring. It's just that pity look that gets to me. As others say here, hearing "That poor thing" is hard too. But I DO understand that these remarks are typically coming from a good place, and that people often don't know what to say. The underlying problem here--pitying people with special needs from afar instead of treating them like ordinary people--is a much larger societal one. I hope in Max's lifetime people become more inclusive and accepting of those with special needs.
ReplyDeleteI have been lucky enough to never have gotten an "Anytime I feel bad I think about YOUR life" comment--beyond clueless/insensitive. Felicia, yes, glares and looks of disgust are far worse... Max doesn't get those. He gets pity. But he's in a shrieking stage, so chances are we might attract those soon!
It's obvious from the comments that we all have different sensitivities. I don't mind when other people cheer Max on--I am always saying "Yeah, Max" and I think the more "GOOOOO MAX" comments he hears, the better. That, to me, is not pity. But maybe it is to other moms.
I admit I myself likely hold my gaze too long on someone who's different. But mostly I do it b/c I'm trying to figure out what the person's diagnosis might be - I'm so desperate to connect to other mito moms!
ReplyDeleteKids always stare, but they are kids, that's what they do. Usually we walk right up to them and introduce ourselves and ask if they'd like to try out Kate's walker. Wouldn't it be great if adults just said "Hi, I saw your that your daughter uses a walker/walks differently/etc. and I was interested in knowing more about her." I would be so happy to tell anyone and everyone about mitochrondrial cytosis!
I hate the parents who shush their kids or shuffle them out of the way. They are teaching them to ignore my daughter's existence.
And LOTS of people say "I don't know how you do it." and I always say "I'm a parent, and parents do whatever they have to do. You could do it too." Because we can, and we do.
I have to add that I know I can be overly sensitive--or guarded--about Max. That definitely plays into my responses. This week, I did a post on 5 Minutes for Special Needs about how someone said Max is "precious" and it rubbed me the wrong way. He's 7, and I felt that was infantilizing. Other moms might have minded at all.
ReplyDeleteLesley, when people say "I don't know how you do it," I have the exact same response.
This is a guest post I once wrote for PhD in Parenting, "How you should treat my child with special needs"
ReplyDeleteThis is my little boy, Max.
At first glance, he may look like any other kid. And in many ways, he is like any other kid. He loves chocolate ice-cream, trucks, airplanes, his toy tractor, chocolate ice-cream, t-ball, splashing around in the pool, the movie Cars, pulling his little sister’s hair. And also, chocolate ice-cream.
Max actually has cerebral palsy. It’s a scary term, I know. Before I had him, it seemed like a terrible fate to have a kid with disabilities.
Then I had a kid with disabilities.
Max had a stroke at birth. Crazy but true: Babies can have strokes. It was a stroke that damaged both sides of his little baby brain. My husband and I were told that Max may never walk or talk, that he could be mentally retarded, that he might have vision and hearing problems. Every single one of my nightmares became a real possibility.
Except….
Max walks. He runs, too. He speaks words. He sees fine. He hears perfectly. He’s bright. He’s funny. He’s interested in the world. Yes, he has his challenges: He cannot talk fluidly, and he has trouble using his hands and chewing food. But he’s doing really well for himself. And he makes me happy, blissfully happy, every single day. Because he’s so sunny, because he’s a fighter, because he is an all-around phenomenal kid.
That might not be what you’d think if, say, you were to spot us at the playground.
You might feel sorry for my child. I know, Max may look a little pathetic when he drools or when he’s struggling to pick up something and he can’t. But, trust me, he is perfectly content with who he is and one very cheerful, life-loving child. Who will someday be quite the ladies’ man, I know, but I’m not quite ready to worry about Max and dating. Maybe when he’s seven.
You might think that my child should be treated differently than other kids. Nope. Max likes it when you talk to him. He likes it when you joke around with him. He likes it when you fart (although I’m not expecting you to do that).
You might think that your kid and my kid don’t have much in common. It’s true Max may not be able to do some things other six-year-olds can do, or do them in quite the same way. But just like your kid he likes to play, pretend, laugh, get silly, touch dirt, roll in the dirt, get himself entirely covered in dirt, bring home dirt, track dirt all over the house. You get the picture.
You might feel embarrassed if your child says something “inappropriate.” You know, like “Mommy, what is wrong with that boy?” or “Mommy, why is that boy drooling?” Don’t worry, I won’t be offended; kids are curious. Kids don’t get it. I understand that. Just as long as your child doesn’t ask, “Mommy, do you think that boy’s mommy could use a little liposuction?”
You might think it’s rude or awkward to pull your child aside and explain that my child has special needs. Actually, I’d appreciate it if you did do that. Sometimes, kids don’t know what to make of Max or how to play with him. I can certainly jump in and explain things to your child, but it’ll be much more reassuring and encouraging coming from you. Say it however you wish–“This is a child who can’t talk like you do but who likes to play just like you do, you may just need to have a little more patience with him”—but please, say it.
Your child will learn about kids who have special needs. My child will feel included. Everyone will have fun. What could be bad? Max is just a kid. A kid with special needs but still, just a kid.
Wow, you just made me feel so much better. I always encourage my daughter to say hello to those around her when we are out and about . . . special needs or not. We think that she should learn to respect and value everyone around her.
ReplyDeleteShe now has a friend with CP and she says that she loves truly listening to her when she speaks. Her friend says that those that want to understand her when she talks will listen. So true.
We have learned so much from your blog. My daughter loves cheering Max on when she sees his videos (they are close to the same age), and has become so much wiser toward those who "seem" different. She now knows that the way they do things in their everyday life might be different, but they really do have a lot in common with her, and aren't really so "different."
Thank you.
It always has felt to me, if I said something like: "Hi, I saw your that your daughter uses a walker/walks differently/etc. and I was interested in knowing more about her." it would seem rude. I think society trys to teach us not to "notice" differences and "we're all the same" So, when we notice that someone is not the same as we are, it's difficult to know what to say or do. I don't want to seem rude, so I say nothing, even though I am curious. It's a fine line, I think. I want to do the right thing, I HATE when I screw that up!
ReplyDeleteWow. Well said.
ReplyDeleteWe love it when people speak directly to Ashley THEN ask us what his condition is.
We've also stopped being upset when they so "what's wrong with him". It's just a way of asking.
Like you guys we encourage the girls to say hello to disabled kids who we come into contact with on days out etc.
Pity is annoying because it means that person is assuming a position above you and yours. We don't need pity - we do need acceptance and normality and conversation.
I have a Max too! My Max is seven and he has autism. We have gotten that pity look before.
ReplyDeleteOne time when Max's hair was longer there was this older man on the bus who started telling me "At least she is pretty. I mean she really is a lovely child." And he kept going on and on about it. I know he meant well, and it was an honest mistake thinking Max was a girl. But I don't think, "At least she is pretty," is much of a compliment even if he had been a girl.
Very well said ! I wish more people understood that....but maybe if enough of us do the right thing and smile and say hello...because why wouldn't we...just maybe the rest of the people out there will follow our good example:-)
ReplyDeleteI tell people that my son is Deaf and you know what I've heard dozens of times?
ReplyDelete"Oh, It's a sin."
Makes me want to smack a person upside the head.
"He's FINE" Is what I tell them.
Pity really pisses me off.
I too get - and hate - the pity stare. Yes, my son has a mild physical difference. He's also extremely smart, funny, talented, and happy. Being his mother is the greatest thing that has ever happened to me, so it is beyond offensive when certain people act as if raising him must be a huge burden.
ReplyDeleteThe ones who give The Stare are the ones who should be pitied, as they are missing out on getting to know a really amazing little boy.
In response to Julie, I think it's perfectly fine to ask about a person's diagnosis - after you have taken some time to really get to know him or her. While it's natural to be curious, our kids do not need to be walking billboards for their disability every time they leave the house. It wouldn't be considered appropriate or polite for me to go up to any other stranger and ask about his or her medical history, and we deserve to be treated with the same respect. The next time you meet someone who has a disability, get to know him like you would anyone else - his likes, dislikes, talents, etc. - before you ask about the weaknesses. You're right that we're all different in our own way, but we can all find some common ground.
YES!! So appreciate when people take the time to get to know me and not stare or talk about me as if I'm not there. Thank you for sharing and making a difference.
ReplyDeleteSo often you speak for all of us in the special needs community, Ellen :) Smiley is now 13, but for so many years she was so small that she just looked like an overgrown toddler in her buggy. Now she is bigger and louder and still in a buggy (I prefer it to a wheelchair cos that is useless in Irish weather). Small children look puzzled and often come over and ask what is wrong with her, and I don't mind that cos it gives me the chance to explain. Older people often love the fact that she is laughing in the street and come over and say hello, and that's great. Sadly it is often other families who give me the pity stare, especially when I am also struggling with aspie boy as well.
ReplyDeleteA mom of a child with a disability can be sensitive about remarks based on previous experience, or repeated experiences, that might not register with anyone else. When I read "My husband and I were told that Max may never walk or talk, that he could be mentally retarded, that he might have vision and hearing problems. Every single one of my nightmares became a real possibility" I felt it reflected on my son who was born with Down syndrome like many people felt President Obama's bowling remark reflected on their children in Special Olympics.
ReplyDeleteCarrying around the ancient chip/ ancient cedar log of disability hierarchy hyperawareness on our shoulders can really weigh a person down, too ~ and may easily exclude us from the supportive communities that otherwise mean the most to us.
Should I have to be reminded so often that my son's IQ is a nightmare thankfully not realized but foremost in another mother's anxiety? I'm a tough old bird now but all that is conveyed in that thought still resonates back to my son's first weeks and months. And to moms of new babies with Down syndrome I say: steel yourself and stay.
What a wonderful blog :)
ReplyDeleteI've found my way here through my travels and wanted to say what a pleasure it was to read your posts.
Stacie from Australia
Happiness
As a special needs teacher and growing up with a brother with Autism, I understand completely what you posted about the "stares" they give on you and your kid. Yes, it is a common theme among family members with a special needs siblings. If only we can show them and let them experience the downs (a million of it) and ups, (a billion and counting), maybe, maybe they'll be very thankful for it.
ReplyDeleteWhen we were in the immigration line at the airport in Toronto, each time we wound around the corner, this man stared at Sebastian. I tried to ignore it, but each time I got more upset. Finally he stared so much that he wasn't watching were he was going in front of him. I said, 'you know, you can smile at him. He loves it when people smile at him, he's very friendly.' The man was shocked and embarrassed. I held back my anger. My son is two. He's cute and he's happy and he loves people. If you are going to stare then freaking smile at him.
ReplyDeleteAt Kara - Amen! When people stare too much, I tend to smile right at them, give them a big hello, and introduce them to my son. I've found that it not only puts the person in his or her place, but it serves as a reminder that my son is a human being who deserves to be treated with respect. A woman at the hospital where my son gets physical therapy (of all places) once kept gawking at him, even after he had smiled and said hello to her (he's picked up on my tactic). She clearly heard him but still didn't answer and instead kept staring. It was only when I crossly said, "You know, the least you can do is answer him when he speaks if you're going to stare," that she looked thoroughly humiliated and muttered a hello. The rudeness of some people, from strangers who have marched up to me and asked me what's "wrong" with my son's leg to those who can't seem to keep their eyeballs in their head when they pass us, really astounds me.
ReplyDeleteI've just found your blog and LOVE this post. Thank you for sharing something I need to be more aware of and help teach my kids.
ReplyDeletei absolutely love felicia's long comments! they crack me up & she is a great writer. does she have her own blog as well? anyways, i was shopping at lord & taylor (this was before my son was born) and i saw a mom with her little girl who had down syndrome. i ALMOST gave them a pity stare but then i realized the mom was so happy & proud. mom & daughter were having so much fun shopping & hanging out. so i didn't feel any pity for her at all. also, this is random but the mom was caucasian and the little girl was 100% asian so obviously she was adopted. i was like, wow there are angels out there who adopt special needs children. meanwhile, my a*ss just wants to run away from my life everyday! ok that sounded bad. i wouldn't really run away though. well, maybe one day i will. just kidding.
ReplyDelete