Wednesday, May 11, 2016

Staring Problem


A reader recently wrote to me about her daughter (who also has a visible disability) and how difficult it is for her, as a mom, to watch her daughter be stared at everywhere she goes. She also has a history of social anxiety that makes this an even tougher issue than it already is. And it is tough.

I wrote her an email back, but I thought I'd talk a little more in depth about what to do--or at least what we do--about the staring issue. I've written a post about navigating a special needs encounter for parents of 'typical' kids and what to do when they and their child meets a child with special needs out in public, but this one is for all you special needs parents out there. 

If you have a child with visible differences staring is a part of daily life. I have likened being Lamp's mom to having a celebrity for a child--she is noticed errrywhere she goes. Most often there are stares, but also pointing, kids coming right up to stare close range or even grabbing her arms, children taking about her right in front of her, and the worst case scenarios have been laughing and once a girl crying and screaming saying Lamp scared her. As you can imagine, this can be really hard to cope with. I will say that since we are almost 6 years into this gig, it's gotten easier overall. Easier in the sense that I'm more comfortable knowing what to say and do, but it's never really easy. 

Below I share a list of the tactics we've employed in order from most passive to most aggressive. To be clear, how passive or aggressive we are in confronting people who stare, point, etc is directly proportional to how passive or aggressive their behavior is in the first place. I would also ask that if you don't deal with this type of situation personally, please reserve your judgment on how you think someone should respond. By and large we are understanding people who believe in giving others the benefit of the doubt, but sometimes you really have to address the situation head on for the sake of your child. 


Here are our best tactics for dealing with staring and other unwanted attention in regards to having a disability.

1) Ignoring it. By far this is the easiest and most common thing we do. For the most part, it's appropriate and fine. Usually people aren't trying to be mean or rude, and so often we just keep on keeping on. I would even say we err on the side of kindness and there are times we just ignore behavior that would certainly merit a more aggressive response. 

2) Staring back. Listen I understand curiosity, but there is polite staring (smiling, less than 2 seconds, saying hi) and then there is rude staring (prolonged looking, craning your neck when we walk past, no smile or sign of kindness). I exclude young children (5-ish and under) from rude staring because they don't know better. But when adults walk past and actually crane their necks to keep watching Lamp...Nope. That is not OK.  So I simply stare at the adult or older kid until their eyes catch mine and sometimes I smile, sometimes I do not. This lets them know that 1) You're being rude and 2) I SEE you being rude and I've got my mama bear claws out so don't mess. Almost always people look away immediately and you can sense a sheepishness come over them. For sure I would say this is rather passive aggressive, but c'mon people! 

3) Saying Hi! This is our most common method when dealing with children who stare. We say HI, really nicely, but also loud and clear. I use this for kids who are both very young and therefore not being intentionally rude, and children who are at an age where I feel they should know better. We are almost always smiling and saying this in a very friendly way. And often it's a great way to make an introduction or start a conversation. HI! What's your name? This is Lamp. Sometimes I ask if they have any questions and follow the 4 steps I talk about here. Other times, I say Hi! to simply to let them know we see you and please stop staring. While my husband and I usually aren't confrontational enough to say this to adults, Lamp has learned to use this method when she sees adults staring at her. I have seen many, many an adult who was staring at her caught off guard when she looks straight back at them, waves and says HI! Its like they suddenly wake from a trance, then they smile and say hi back. What makes this interaction so essential is that Lamp goes from being an object of curiosity to a real human being in the blink of an eye. For so long I couldn't figure out why watching these interactions almost made me cry everytime, but now I know. Same thing when I talk to kids and say Hi! What's your name? This is Lamp. She goes from being "different" and "other" to human and same. I've always said that I don't mind people noticing my daughters differences--I think that's normal--but try to move past her limbs and see the human as quickly as possible. This method seems to bring Lamp's humanity into focus a little more quickly, which is essential in the disability world.  

4) Calling them out. Yep, sometimes you just have to call people out. Again, this is not usually something that happens with adults, but it is something that happens with kids, especially older kids. Sometimes we give it to them straight, You're being rude. It's not nice to point and stare. No we don't laugh and stare at people who are different. She's not weird, weird is a rude word and we don't use rude words. You can say she's different. Once at a park I confronted a small group of boys who were no more than 4 feet away laughing, staring and making fun of Lamp. I have to say, this is where my personality is a real asset. I am not a shy violet and thankfully being able to confront people who are being rude is not something I'm scared of. Usually. There have certainly been times where I was so taken aback (and I was still so new at it all) that I didn't know what to do or say. That has happened too. 

5) Telling them to go away. Sometimes you just have to tell kids to go away. I don't think B would mind me saying that he has done this a lot more than I have--ha! I really do try and have a teaching moment with kids and turn the situation around into a positive experience, but sometimes the moment can't be salvaged and sometimes it's best for everyone if we just all part ways. And since usually these are kids who have come to crowd around Lamp and grab at her, it is entirely appropriate in our book to ask them to leave us alone, rather than being the ones to leave. This is something that happens most often at parks, swimming pools or other recreational areas where there are large groups of kids. 

Some other methods I've heard of but have never tried:

A 'business' card. I've heard of moms having cards with a little blurb about their kids diagnosis and asking the parents to please address this issue with their child. From what I understand if a child is hanging around your special needs kid--staring, asking questions, etc--the mother would then hand the child a card and say, "Go give this to your mom or dad." and then ideally the parent would talk to their kid right then and there about differences and appropriate behavior. Some people seem to have really good responses with these cards! I'd love to hear from someone who has used them. 

Wearing a T-shirt. I've seen shirts that say stuff like: Keep staring it might cure my child's autism and then we can work on your social skills. Or there's a popular one in the limb difference community that says 10 Fingers are overrated. I think these might be effective for kids with special needs who are a bit older and who want to 'own' their disability and maybe even get a laugh (this one is classic), but I worry that shirts like the first one come off a little too in your face. And while they may be effective for the few people who could really benefit from it, they may alienate other people who wouldn't stare in the first place but now feel like they can't approach your family at all. BUT Autism is an "invisible" disability and yet one that often gets judgmental stares from people who are making all kinds of assumptions, so maybe this is actually a great shirt to have! Again, I'd love to hear from any of my autism peeps about their thoughts on these shirts. 

So there it is--that's how we deal with the staring issue. As I said we've gotten much better at it over they years--we're more comfortable confronting people when we have to and even just more comfortable knowing it's a way of life for us. Sigh. But should it have to be a way of life? I hope not. Special needs moms and dads what do you do about the staring issue? What has worked or not worked for you? Do you have any advice for a mom who is struggling with this issue especially in light of her own medically diagnosed social anxiety? I'd love to hear your thought and or questions! 

And for all you parents of typical kids, I also want to be clear that I understand that small children really don't know better and rather than being mortified that your child is staring and pointing, and then shushing them while walking away, it really is best if you can take the time to educate them and introduce them to our children. Build bridges of friendship, not walls of isolation. That's what this post is all about. Regardless of your child's age and awareness staring can still be a difficult and sensitive thing for those of us who deal with it all the time. Thanks for understanding. 

9 comments:

  1. Such great advice! I remember just watching Lamp once when you weren't there at the playground. It was just one time and I was so irritated and annoyed at people staring at her, and one persistent little kid, that I did tell him to go find his mom. To deal with this all the time takes such great inner strength. So glad you are out here helping people navigate through this stuff 😘

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    1. You know, it's nice to know a friend has walked in your shoes for even a short time. I mean, usually everything is fine. But even that, even "fine" looks different now than it did in the beginning...if kids just stare, maybe someone points and just asked what happened, that's "fine" and no big deal. But getting used to this version of "fine" took some time. Anyway, thanks for all your encouragement.

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  2. helpful! I've heard of the business card idea too. Our little guy is on the autism spectrum, and at times in public we get looks. I've grown a much thicker skin over the years, and care much less about what people think! but very wise to be patient with young children who don't know better.

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    1. Yes, I do think it's important to give small children the benefit of the doubt. I mean Lamp herself has said something about the way other people look--she's a kid too! She gets the same lessons that I try to teach on here..sheesh! You'll have to come back and comment/email me if you ever try out the business card thing...I'd love to hear how it goes.

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    2. Anonymous10:37 AM

      My daughter had a ng/feeding tube when she was 16 and made business cards to explain it to people who asked her. It was funny and helpful to be able to educate people without having to talk to them. The questions you get are so predictable and she wasn't comfortable talking to strangers about a personal (but very visible) thing. This was a good solution for our family.

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  3. I am wondering: do you ever approach the parents of kids who are acting rude? My daughter has a facial and hand difference and we use most all of the tactics you have here (pretty much in that order, too) but there have been times when kids would not leave my daughter alone, were rounding up all the other kids on the playground to show them her differences, etc. while the parents were off socializing and I know they had no idea what their kids was doing (and maybe they didn't care? I don't know). But I so wanted to go tell them and ask them to have a talk with their kids but I am completely non-confrontational and have never felt comfortable doing that. Thanks!

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  4. Anonymous3:25 PM

    I'm sure it can get incredibly exhausting always feeling the need to explain! I can think of a couple of times when my kids embarrassed me by their reactions and I really appreciated the one time the person themselves talked to my kid directly. Such a relief! Parents can often freeze up in an awkward moment. By all means speak up!

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  5. i would love to find a "funny" autism shirt for my son to wear. more like the "ten fingers are over rated" shirt.
    i think it's interesting that even though we've got both visible and invisible differences in our family, my kids will still say stuff about other people's differences in sometimes not-so-pleasant ways----

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  6. Helpful. What about when you get lots of questions? I don't mind from kids but adults- happens frequently to us….People come right out and say what happened to my son's eye or gasp or whatever. I don't mind explaining to kids but my son is at an age where he really does know he looks different and he isn't wanting to wear his eyepatch- partly because it can turn into an issue when were out. People often call him a pirate or ask what happened to his eye. Just curious how you would handle outright questions.

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