Feel Free to Stare

I’m going to go ahead and assume this might be controversial to some of you. In fact, many special needs bloggers have talked about how much they hate this.

For me, however, I invite you to stare. Stare at me, stare at my kid. Soak it all in.

You see, I think a lot is lost by not looking.

You might fail to notice Charlie’s slightly pink cheeks.

You may not see his one, perfect dimple.

You wouldn’t get to see the joy on his face when his favorite songs come on.

Or the blue of his eyes.

I really do believe that the only way people are going to get comfortable with the disabled is to experience them. Not everyone is going to have a disabled niece, cousin, or neighbor. I’ve missed too much in my desire to be polite. I’ve missed the real person that co-exists with disability.

I was struck by something Barbara at Therextras said months ago about Down Syndrome in the community. She related something that I guess I hadn’t realized–parents and family members of people with DS actually had to work to integrate them into the community. I grew up with Corky and Life Goes On, so it’s hard to imagine a time when people with Down Syndrome weren’t a part of the community.

So go ahead–get an eyeful–because me and my disabled child aren’t going anywhere and frankly, I’d like you to get used to the sight. Just do me a favor? If you’re going to stare and try to figure out what the heck is going on with my kid, put a lovely look on your face. Smile. It’s OK if it’s fake, I’ll take it. He’s still a child, he doesn’t need pity-face, or worse yet, disgust-face. I know we’re not typical over here, but really, how can you resist those eyes?

Many thanks to Cristin who expressed a similar thought recently and made me realize that I’m not completely alone in this.

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  1. That is just profound.

    Look and learn and feel.

    I think that the world can use more of those three words.

  2. that is such a great photo. i saw it in your flickr feed a while ago and wondered why it didn't make the blog as it's such a great shot. charlie is one handsome dude.

  3. PrayforNathan.org says:

    I hadn't thought of it that way Katy. You're absolutely right. Thanks for sharing this perspective.
    Now the question is – do you just let them stare while you go about your business? Or do you strike up conversation and tell them about Charlie?

  4. Janis @ Sneak Peek At Me says:

    Still not all that comfortable with STARING, but I agree about the smile.
    Geez, people would it kill ya?

    LOVE the pic, so beautiful.

  5. Wonderful post…and picture!

  6. Awww, thanks for the shout, but I think you've done a better job!

    And yes, how can one resist those eyes??

    I went on a date with Corky's cousin in high school. He was hot. Forget his name, Burke is the last name though right? Yup. Corky is from a few towns away from me.

  7. Good point, Katy! Love Charlie's pics and the haircut ones are great too! We have to learn to be strong in our resolve to get people to accept our babes.

  8. I am the SAME way!! I WANT people to ask me about Oia and make a comment because part of my job as her mother is too also share what cp looks like and to EDUCATE. Yes, please stare.

  9. Charlie is gorgeous, doesn't matter what is "right" or "wrong" with him, he is still a sweet little boy who deserves just as much as any other kid. If I were lucky enough to see Charlie I know I would smile…he is just so darn adorable!

  10. The Henrys says:

    I agree with this too. I love when people smile at Gracie, and then me because that means they can see her beauty.

  11. Charlie has gorgeous eyes! You can see his soul. He is such a cuttie! I can relate with my Christopher.

  12. Anonymous says:

    What What!!!!
    Look at those comments EXPLODE!
    Anywho, this is a great post, you really feel it resonate in your heart/soul. Just thought you'd like to know.

  13. Great post. If someone is looking at us and not smiling, maybe looking with the 'whats wrong with him look' I always try to smile first to let them know its ok to look, I'm open to any questions, and gee isnt my son just the cutest. :)

  14. A gorgeous picture of Charlie!

    I have no desire to stare but sometimes I would like to ask questions. Not to be rude or anything but just to learn something.

    It is nice to learn about Charlie. I don't have any disabled children in my life and through your blog, I am finding out what a blessing it can be.

  15. Charlie is so beautiful.

    I invite people to stare, and ask questions. I like to try to educate them about strokes, so they will be aware of the fact it can happen to anyone. I tend to think we might save a life someday.

  16. Nadine Hightower says:

    He has better and sweeter blue eyes than Brad Pitt!!

    But that being said, there are some people that feel completely different than you. Staring is rude. And some older children and adults may not care to be looked at… at all.
    You and I know that Charlie is a beautiful little boy. But the mothers that are not in tune or on the same page as you, are more sensitive. And it's not that you are insensitive but they have insercurities or comfortable…. gee this isn't coming out right.
    It's like the photos on Facebook. I see an old photo of classmates as no big deal. We are What We Are. Period. But the person I tagged is not in sync with me. Maybe they had a bad hair day or something….they untag themselves.
    Have I made this about as clear as mud??

    I'm good with me. Others are not as secure with themselves.
    You are good with Charlie and his disabilities. Others are not as comfortable. That's their shortcoming…whether it be with their children, or with themselves.

    When I was a kid there was this man, he had one eye. The other was just a hole. no patch. So instantly your eyes go to the empty hole in his face. It was very hard not to stare. And yet, it was scary looking. I felt pity for him to have to go thru life with one eye but yet repulsed by him.

    So another stance to show you… be easy on those that don't really know the scoop. I personally have not been around a lot handicapped children and I'm not sure I would know the proper way to handle them.
    My sister works with the Special Ed kids and helps with Special Olympics…she's cut out for that. I'm not. That is my short coming.

    Still muddy I know… but it's what is in my head.


    I love reading about other people feeling the same way I do. I have always said I would much rather you stare and ask silly questions, when you do you learn.

    I love telling people about Zach and welcome the idea of showing others that we really are OK you don't have to feel sorry for us.

  18. Mamá Terapeuta says:

    Great post!

    Too bad you dont reas spanish, my last column was about this issue :)

  19. I probably don't even notice most of the time if someone's staring at us. I'm generally too focused on keeping my kid on track. Her "disability" is one of those "invisible" ones, and maybe that also makes it different. If I do notice people staring it's because I know they have a reason to be staring – in other words my kid is probably in full-blown meltdown mode. I still don't notice much because I'm even more concerned with keeping her safe, keeping others safe, and getting her re-centered or out of there asap. There's not usually time to explain or educate. If I manage to get her "OK" again and the other person hasn't fled the scene I may try to explain. Staring is a natural reaction to something unusual in our environment. It is instinctive (think driving past an accident on the side of the road…even if you don't really want to look you will) and self-protective. It doesn't bother me even when I do notice it, and I agree that it's an opening to advocate, as long as that is not at the expense of being there for our kids.

  20. I absolutely love this picture of Charlie. I love the post too.

  21. You know, you always feel bad about looking too long because people always tell you it's rude to stare. But you're right–you can learna lot more by looking at, rather than looking away.

  22. caryanne says:

    I couldn't agree with you more on this one Katy. I love it when people look at Ben and ask questions. I love any opportunity to educate. PLus, I'm so darn proud of him, I just love to show off all that he CAN do. Great post.

  23. I'm staring…and I'll keep at it.

    So glad to know you…and be known!

    Much love !!!

  24. I couldn't agree more – I love it, that you always seems to post about things I think about but you do it in such a more eloquent way :)

  25. Miss Burb says:

    love those cheeks. :)

    I stare (even though my son is disabled) because I'm probably checking out your equipment. lol. Get stuck with one piece of horrible equipment (our kid kart) and you make sure it never happens again!!)

    of course, I'll probably smile and say hi!

    I never cared for staring, but that's because I've always felt different and weird so that's just me. but if the staring is with a smile or maybe a hello I don't think I'd mind. or if it's from a child.

    Mostly, I've encountered people who don't question his disability; they just say how handsome he is. And that just makes me proud; they see past the chair and see his beautiful smile, cheeks, and eyes.

  26. pixiemama says:

    His cheeks! Who would want to miss those adorable floppy cheeks? I miss those on my otherwise floppy guy.

    You're right – go ahead and stare. Get used to us. We're a part of your community.

  27. TMI Tara says:

    Love it. I agree. Look. Ask. It's better than the uncomfortable glance then hurry and look away that most people do. Great post.

  28. I wrote this list earlier of things that are inspiring me. If I had read this before, it would be #1.

    You and your sweet-eyed boy are inspiring.

  29. Best. Post. Ever.

  30. sherrilee says:

    Wow. Thank you! I really needed to read this. I have a hard time not being bitter about the stares. This is a new perspective. I think I will book mark this post and read it when I'm feeling sorry for us after our weekly trip to the grocery store.
    I am just loving your blog :)

  31. Kara Melissa says:

    YES! Please just smile. Exactly. He's still a child and an adorable one too. We were recently waiting in the immigration line at the airport in Toronto with a long winding line, the type where you keep passing thevsame folks. This guys just kept staring at Sebastian and I mean so much that his head was cocked around backwards as he walked forwards. Finially I said, 'you know, he's really friendly, you can smile at him, he likes to smile back.' he was clearly embarrassed. I was just angry. Ok, so I know my kid has glasses. His body works differently. But he's also only two and he's cute. So just smile when you stare. I'm totally with you on this, as well as with staring. There are too many people in society that don't experience kids or people with disabilities. And we refuse to stay at home, staring or not. The photo of Charlie is gorgeous.