Thursday, March 3, 2011

Getting people to treat kids with disabilities like kids first

I am drained, ecstatic and overcaffeinated tonight—the reaction that post got was incredible. It was the antidote to the Twitter venom. Believe me, naysayers, I realize that one Twitter outreach project and one gigantic traffic explosion and a whole lot of r-word posts combined won't change the way people treat my son, or the way people treat your kids, or any kids with special needs (or adults, either, for that matter).

Several commenters noted that the critical thing isn't to end the use of a single word—it's to get people to respect kids and adults with disabilities and encourage tolerance. Y-E-S: That's the end goal. But using more respectful and tolerant language is something simple and concrete to do—and asking people to do that was one thing I could do.

That's how it goes. You do what you can do within your power and your sphere, taking small steps—the same way Max got to walking. First he commando-crawled, like an army soldier. Then we worked for months to teach him how to pull to stand. Then he got a walker with wheels and he'd careen around the house, outta his way or he'd run you over. And then, exactly on his third birthday, he took those first few glorious steps across his room as Dave and I cheered him on.

The Twitter project and yesterday's post were my baby steps toward making kids and adults with disabilities more part of the mainstream: I asked people to reconsider using a word that segregates and demeans people with disabilities (even when it's not directed at them).

In Real Life, I take other small steps to get kids and adults to be tolerant and accepting of my son—and hopefully, of kids with special needs in general. What's helped:

• Putting kids' in Max's shoes. I'll let kids try the speech app on Max's iPad. When he was little, I'd let kids in the neighborhood take a whirl in his walker. I want them to get that it's cool to be Max.
• Asking parents not to feel bad for him. The pity distracts people from his abilities, his charm, his Max-ness. If I tell a parent Max has cerebral palsy and he or she says "I'm sorry" I'll literally say, "Please don't be. He's a great kid who's happy with who he is, and who likes the color purple entirely too much" or something like that. I joke. I talk about the every-kid stuff parents deal with.
• Breaking the ice for Max. When I catch a kid staring at Max, I'll say, "He's a kid just like you, and he has his own way of talking—ask him what his favorite movie is!" Or "Ask him what flavor of ice-cream he loves!" And when Max is ready to meet chicks, I'll be happy to be his ice-breaker. (As if he'd want me around.)
• Giving straight-up answers. When kids ask why Max drools I'll say, simply, "Because he has trouble getting his mouth to close." Once, in an attempt to mitigate the issue, I told a little kid at a party that I actually drool in my sleep and he shouted, "EWWWWWW! DAD, SHE DROOLS IN HER SLEEP!" That was fun.

I don't have all the answers—this is a work in progress. And so, I ask you:

If you're a parent of a kid with disabilities, what do you do to encourage tolerance and acceptance of your child?

If you're a parent of a kid without disabilities, what suggestions do you have for encouraging tolerance and acceptance of our children?

If you are a person with disabilities, what say you?

Baby steps, people. Baby steps.


  1. My daughter has high-function Asperger's. The other kids definitely pick up that something is different with her, but she's so high-functioning that it really hasn't affected her friendships yet. If she's having a tough day and tantrumming a lot, her friends seem to be pretty understanding. I'm really surprised in that these first graders put up with her much better than her friends did in preschool!

  2. Hey, when Kameron was young, he was on a vent with a trach. We got him weaned of the oxygen by the time he was five - awesome!! But the stoma in his throat (the hole where the trach was) never fully closed. Doctors didn't think it was a big deal, and after awhile, it became kind of a cool thing. When he sneezed, snot came out his nose and his neck. Odd, sure, but hey - you take those cool things where you can, right??

    One time we were on vacation in Colorado at a huge indoor public pool. It was great - the pool was a huge hot springs. The problem with the trach hole was that if water got in, Kam could drown, so I was always trying to find ways to contain him in water.

    So here we are at the pool. Kam is splashing away, and I am desperately trying to ensure no copious amounts of water get near his throat. Lots of kids and adults were staring, of course, but one little girl around five finally came over and asked what was up with his neck.

    I told her, "It's like another nostril, only in his neck." She just rolled. She thought this was the funniest thing she'd ever heard. In fact, she didn't even say bye, just swam off saying, "Another nostril...HAHAHAHAHAHAH!"


  3. ok your posts are making me think BIG TIME! YESTERDAYS POST WAS ON MY MIND ALL DAY! now this! i feel ashamed to say that i am hoing to have to think about this before i answer it, and yes i also feel the need for a blog post! you are wonderful, thankyou from me and my beautiful tilly for making us all stop a bit and think. you make people walking in the woods realise they are surrounded by trees. xxxxxxxx

  4. So...after reading your blog yesterday morning, I took the pledge to Spread The Word to End The Word. I didn't think that I would have much opportunity to bring the subject matter to light but 3 times yesterday I interrupted conversations I was having to explain that it really was not an appropriate word to use. Glad to help spread the word.

  5. I am a regular reader of your blog and the parent of 2 young kids without disabilities. I want to teach my kids to love and accept other kids regardless of their abilities and differences, so I think about this a lot. For me, there is some level of being uncomfortable because I'm so worried about doing the right thing and NOT making someone feel uncomfortable. Ironic, huh? I know that my kids will occasionally ask questions or notice a difference (ANY difference, not necessarily a disability) and I try to explain that EVERYONE is different which is GREAT, and that we all have our own strengths, weaknesses, and challenges. I don't want my kids to stare, but I don't want them to look away either, and I'm not always quite sure how to accomplish this. It sounds like you do a great job for Max, trying to help other kids realize he is just a normal kid! I will definitely take this approach in the future - having my kids ask a question or interact like that. Thank you for this! Great post about the "r" word. I was already passionate about not using that word and encouraging others to stop, and it was a very interesting post. Great job!

  6. My big pet peeve is "person first" for individuals with disabilities, illnesses, or mental health issues I think it is CRITICAL to use person first terminology. The interesting thing is it would sound weird to use an more common illness as a main identifying factor... ie( That cancer
    However even some of my peer therapy students have difficulty not saying something like that borderline, etc.
    And I have a huge pet peeve around stating that certain tools some individuals with disabilities utilize as being a part of them...
    "wheelchair BOUND" well, actually, many individuals with wheelchairs can indeed leave their chairs on their own, and everyone else can with assistance. I haven't met anyone who is completely unable to leave a chair yet in all my years of assisting children and adults with developmental disabilities.

  7. First off, let me say that I love the upbeat tone to your blog. I found you through the "Spread the word..." campaign.
    I have a 27 yr old daughter with Down Syndrome and non-verbal. Things were actually easier when she was little, cuz she was so dang cute. Now, however, as an adult, it's not so easy at all. She scares people because she looks so cranky most of the time. It's her "I'm not sure of this" face.
    When kids and other adults treat her like she'll break, or that she's hard of hearing, I try to explain that she understands almost everything you say, and she feels everything too.
    I have also tried to make sure that people know, just as Phoenix Peacock said, that she is a person first, who has a condition called Down Syndrome. She is not Down Syndrome. She is Mary first and last. And just as others have allergies, or freckles, or blond hair, it doesn't define them, just as Down Syndrome doesn't define Mary.
    Keep up the good work!

  8. one of the best things is just to keep talking, and it's great how often you start the conversation!

    great post that makes me think, as always at love that max!

  9. I have tried from day one to teach my two girls now ages 9 and 5 that being different just makes you unique. Do they stare? yeah probably, who doesn't but when I catch them I usually say something like. "Oooh look at that shiny wheelchair with the stickers on it, isn't it pretty?" Or for my oldest who now asks quietly "Mom, what is wrong with them?" I just say "THat is the way God made them. They have Downs Syndrome or Spina Bifida or something I don't really know. I am proud to say that although I am NO where near a perfect mother. I do think I have made them realize that those with disabilities are just like them only different and more special.

  10. I try to make people fall in love with my daughter with Down sydnrome. Yes. On purpose. I craftily post adorable photos of her on my blog. I think it's working and that makes me happy. As you said, baby steps, people.

  11. It is a mindset people without disablties need to push themselves to see disabled people on their same level

  12. I'm a teacher. We have children with various disabilities on campus. We have also had teachers with physical disabilities and LD's (that would be me).

    I currently have 2 life skills students who mainstream in my class for subjects and to socialize. My students are very protective of them. This is especially true when new kids come in.

    Last year an autistic student was wearing his headphones in the cafeteria. A new student started to make fun of him. Before I could react my 4th graders and the autistic student's 3rd grade classmates turned on the newcomer.

    They physically shielded their classmate, while my students said "We don't do that here."

    I had a very irritated parent call that evening because my students had told new student No-one here will be your friend if you make fun of people."

    Apparently we were being to PC. Have to say boy turned out to be a better man than his father and cleaned up his act.

    One of the key things we have found is being able to explain what is going on with the person. For example explaining that our Autistic student feels noise as pain like someone his hitting him.

    In Max's case we would explain that his brain can't always control his body, and that speaking is very complicated because of all the muscles involved. So to unlock the ideas in his head he uses his Ipad to talk for him.

    I hope that makes sense.

  13. many great comments here.
    I would go along with those who say focus on Max and his sheer purple-maxness. Our kids are brilliant and have so much to offer to those who can open there hearts to them and not be blocked by their disability.
    Oh, pet peeve of mine is calling their disability a "problem". It isn't. It presents daily challenges which we work to overcome but a problem? nope.

  14. My son has ataxia-telangiectasia (think MS + Muscular Dystrophy + CP + Cancer + Cystic Fibrosis + Immune Defficiency.) We have business cards that we give to people when they stare. Since our son is only 3, and his condition is rare (only 500 kids in the US), progressive, and terminal, we hate to say all that out loud. However, it's an awesome conversation starter. We also let people know he tells a mean knock knock joke! He's just your typical 3 year old with HUGE mountains to climb.

    I always tell people it's ok to look, but could you at least smile when you do so. Hey, you could even say hi or introduce yourself. :-D

  15. I think that your matter-of-factness about answering kids' questions about Max is really helpful. Kids are really frank and speak their minds. The same behavior from an adult would be viewed as rude or offensive but from a kid it's usually because they have no filter. Usually the simplest answer is the best one. When a child in her class became extremely ill and had to be pulled out of school, the teacher explained that we didn't need to go into details about why he was in the hospital and that really, at the end of the day, 5 year olds are only really concerned about how things affect them. She simply explained that he was sick and couldn't come to school in a while and that they were all going to be fine. The kids have made him Get Well cards and Valentine's Day cards and stuff but otherwise don't think about him and it's ok. They don't need to. They just need to be reassured that they're safe.

    As a parent, I try not to make a big deal of people with disabilities so that my 5 year old daughter won't. When she giggles and points at the little person who works at Whole Foods, I tell her that it's not polite to point at people. She asks me, "why is that lady so short like a kid?" My answer is simple: "that lady is a little person. grown ups come in all sizes. some people are tall, some people are short, some people are skinny, some people are fat, and some people are in between." I'm certainly not ultra politically correct but I try to model what language she should use. For example "Native American" instead of "Indian" and "little person" instead of "midget."

    She knows that certain words are off-limits, either for their potty-mouthness (she learned at school that some words are bathroom words - like doody and pee-pee - and should only be used in the that room, while other words are never ok to say like curses and others aren't curses but just make people feel bad such as chubby. If I hear her using the word retarded I'll let her know that it's not a word she should say because it makes people feel bad.

  16. An adult friend who'd had an arm plus shoulder amputated in infancy once told me about his childhood experiences on the beach, where his physical differences from other kids were very visually obvious. Some kids would ask him what had happened to his arm, and he would make a great show (somewhat humorously) of looking all around for it, as if he hadn't realized it was "lost" until that moment. Other times, though, young naive children would approach and say "my mommy said to ask what happened to your arm". These kids were too young to realize that their moms knew perfectly well that this was an intrusive and inappropriate question, yet exploited their own kids' innocence (by telling them to go ask the disabled kid about his arm) just to satisfy their own curiosity, with no regard for the disabled child's feelings. This disabled child had a great response to those kids: "Tell your mommy if she wants to know, she can come ask me herself." I hope those moms were mortified and shamed when their little ones came back with that response.

  17. If people feel sorry for him than that's their problem not Max's or yours so don't bother defending it. Just ignore it. Lead by example works best in the situation. It's not about Max (or you) it's all about their issue and you can't fix other people's issues like that. That's what I say.

  18. *gasp* You left out the non-parents like me. I FEEL SO EXCLUDED!

    I found your blog kind of randomly a few months back and keep coming back, even though it's not my usual type of reading. I mean, Max is cute and all, but I usually need some Sheen-esque drug-fueled crazy news to keep me around.

    Anyway, I don't have kids, but I do plan to have them one day. I am hoping they will learn about disabilities and differences early because my uncle was paralyzed in a vehicle accident years ago, so (god willing) they will grow up regularly around people with different abilities (my uncle lives in an assisted living facility with all sorts of people - some with MS, some with spinal cord injuries, etc). At the very least, having a family member who uses a wheel chair makes the answers a little more relatable when the question does come up.

    I don't think you can make people see the kid before the disability because it's more of a process than an instant brain click. Also, people are used to identifying people by their differences. I think the way you answer their questions (honestly and kindly, with a touch of humor) will help them along the process of seeing the person instead of the disability, which is the first step to seeing all people as people before you notice their differences.

  19. Wow. This is my passion. So I had to comment to you! Today for a matter of fact, I ran into this woman that told my worker that she was caring out reading the paper too much (and wasn't caring about me). And I'm going well, I've worked with her for 7 years...I wanted to say and almost said, "it's none of your business, she knows what she's doing.." (She was reading the paper for stuff to share with me). This really annoys me because I have self managed care and I can tell my workers what to do myself and not other people.
    Talking to kids is fun. You have to explain to them what it feels like too (if you can). Maybe you want to ask Max if it would be ok if they feel his hands or legs or arms..just to see the difference. Kids are really curious..then they can know that it's his body that's different and not his mind (smartness) or his heart.
    The R word I HATE!!! HATE HATE HATE HATE HATE!! I was reading a book one year (that was written set in the 1950s) and every time that word came up my blood pressure would go up (even though I knew it was like that back then). It definetely shouldn't be like that now. I love your blog SO MUCH!!! I read it every day. but one thing I would suggest (you need a search bar so you can search for posts that you like or movies like the purple max one I think is SO CUTE).
    Thanks so much for being so great.

    1. I dont detest the r-word. There is a wise saying- a word is only a word EVEN if it hurts. And, it is SO important to learn the context the word is being used in.

      I like it when a person takes the time and effort to find out what context the word is being used in rather than leap to the conclusion its "demeaning to people with learning issues" and then respond appropriately.

      It tells me they are mature people- yes it does.

  20. I've posted this before...but maybe not here- When my daughter was little, I took her to the local horse barn. There was a group of special needs pre-schoolers there. My daughter was watching one little boy. Then she burst into body-wracking sobs. When I asked her what was wrong- she pointed- the little boy had cranio-facial issues and was on oxygen. She finally calmed down enough to tell me what made her so sad. through hiccups and sniffing she asked 'does it hurt?'
    I told her I didn't know, but we could ask his grown-up.
    I introduced us and told the lady what my girl was worried about.

    She was awesome.
    and the two little kids-the boy in his stroller and my daughter walking- held hands through the horse barn tour.

  21. When I'm out and about with the twins in their power wheelchairs and people ask me about them, I redirect the question to the twins--if someone asks me how old they are, I say, "hey Lauren & Kyle, this nice lady wants to know who old you are?" Anything to get people to talk TO them instead of ABOUT them.

    My all-time favorite thing to hear, the thing that makes my heart soar and gives me hope that they they'll be fully accepted when they reach those tough grade school years is when we pass by another kid and he/she whispers to his/her parent, "That wheelchair is SO cool. I want one. It's not fair." I smile and try to catch the parent's eye, but really all I care about is that other kids think my wheelchair-bound kids are cool. 'Cause they are, and stuff.

  22. Great post! Great comments! Very thought provoking. I have started to say hi to kids when I find them staring. Sometimes that scares them off and sometimes that opens up a conversation. Baby steps.

  23. Wow - so glad to find your blog! Yes - love that Max! I'm a mom to a 21-month old boy who was recently diagnosed with autism. We just started therapy. People have been pretty cautious about what they say to us but the first person to use the r- word is going to get a lickin'. Right now, when people say, "Oh, he'll start talking soon!," I explain that he's autistic and yeah, he did just talk the other day for the first time -- with a picture! And we were over the moon. Hard to get people to see things differently. Are you watching American Idol? There's a boy on there, still in high school, with bright, red curly hair. He's different. He marches to his own drummer and he's not mainstream. Totally bullied in school--and you can see the emotional hurt. He was so gracious when he made it to the top 24 and his two friends didn't. Instead of hooting and hollering, he quietly nodded "yes" to his parents while the other two boys wept. Yet even hearing his story, I know a lot of people who are trashing him because he's so different. If we could just embrace the wide spectrum of who we all are and celebrate each other's strengths, regardless of where they compare to our own, we'd be better for it.

  24. My daughter has arthrogryposis and complex medical needs. She started public school in a regular education classroom this year. The teacher asked me to write this letter to the parents:

    When the students and parents had more questions still months later, the speech therapist wrote this social story to help Mary tell about herself.

  25. there are lots of things we do, one of the biggies right now has to do with our son's size. due to his extreme premature birth (one pound) slow "catch-up" growth and growth hormone deficiencies, he smaller than many kindergarten age boys although he is 9 years old. e often are offered to waive fees to sporting events, theaters or other events or offered reduced fees because it is assumed he is much younger. He is definitely at an age where he resents being considered "little" or younger than he really is and being treated as such so I always insist on paying the expected admit fee for his age making it clear that he is 9, not preschool age. Some question why I won't "graciously" accept the $ break but the point is he is not younger, he is not a "little kid" and does not like to be treated as so. Therefore I respect that.
    I also have used a comeback for years since he came home on oxygen and continuous tube feedings as a baby. Someone, almost always loudly, inquires what is "wrong" with my child; I look them straight in the eye and reply, "Nothing. Why?" Perhaps that might come off wrong to some but the point has always been that he is a child first...a child with ongoing medical and developmental issues but he is always a child first.

  26. It's hard when it's more invisible, in my case, my middle guy with asperger's.

  27. The problem is, to me, that many people act hypocritical when it comes to these things. They will speak out against the "r"; but continue to use words such as "lame" (physical disability), "spaz" (cerebral palsy), "crazy"/"insane" (psychiatric disabilities), "fag"/"that's so gay" (LGBT), etc.

    I think the most common one of these is to speak out against the "r" word and still use crazy or insane.

    I know this may sound blunt, and I am sorry if I offend; but if you use any of those words and and/or terms, you are no better than the people who say "retard". I have grown up with psychiatric disabilities - I was cutting myself at three - and there was all this attention with that word; but then I would say the same people use crazy or insane.

    Mental illnesses ARE disabilities. They are not the effect of bad parenting, nor can the kid just "try harder". When I was depressed at eight, I was in no more control than Max is of his speech. Of course, I would try to not cut, jump out of a car and I would try to cope better; but I didn't always succeed. Same with hearing voices. I would try to make them go away; but, for the most part, it was beyond my control.

    Then, as always, they had a speech against the "R" word, while they would scream at me to try harder. The hypocrisy stung and only added to my pain.

    If people still want to argue, please do your research. It is accepted fact that the brains of those with psychiatric disabilities work different - it can be seen on MRIs, fMRIS, etc. In Schizophrenia (which is NOT Multiple Personality Disorder - it is NOT), it can even be seen on MRIs. It causes brain matter to go, and lessens left brain activity. People lose their life, their jobs, their family, their future. They may end up in a group home; but more often, because society blames them, they end up in jail, homeless, or dead.

    Many still want to blame, though. I ask: if I had just said a person with Down's Syndrome or CP was in those conditions, how owuld your reaction change? This is how we treat people with certian disabilities - the "wrong kind" of disabilities.

    A high school team recently did a dance with straight jackets and those "I" and "C" words. (My response: People had this, "oh, it's the crazies responding again".

    I am sorry if I offend; but I need to say this. Not to invalidate your pain; but to get someone to recognize ours, too. There are no resources for childhood mental illness. All those special needs programs? Many won't take a psychotic (NOT psychopathic - there IS A DIFFERENCE), suicidal, manic and/or depressed kid. The programs that ARE designed for this just yell and punish the kids. At schools for kids with Mental Illness, abuse, medical neglect, sexual abuse are common. If you challenge or report them, they have lawyers to stand behind. Child Protective Services defend them, too.

    How would you feel if this was Max? If Max was treated this way?

    There really isn't any difference.

    If you speak out against the R word; but use Insane or Crazy, you are acting hypocritical. That needs to stop.


    1. Erika there is a special place in hell for the staff at these programs. Programs which are for those with MI should NOT be punishing them. What is wrong with these people?! I'm appalled, yes appalled. The staff should be fined and the programs shut down.
      Sexual abuse at schools for children with MI-- Outrageous. I despise "people" who treat others badly.

  28. I'm a wheel-chair user, but not a parent. What do you parents think of this approach?:

    When a child questions what is "wrong" with your child, how about explaining that he/she does things differently (or can't do something). You can then ask the child what he/she can't do, or has difficulty doing. I think that would get the child thinking about how we're all disabled in some way.

  29. I like best the inviting them into my kids world. they thing that is missing mostly is some empathy. the best way to teach that is to invite other kids or people into your kids world. to say he walks this way or talks that way for only one reason he was made that way. god the universe science what ever or who ever decided he should be unique the only prototype . no one in the world is like my kid. this alone makes him worth knowing. but he is so unique sometimes people do not know how to start. so i would like to invite everyone into my kids world so next time you and your family need to try something new try a day of silence. my kiddo i think he has selective mutism he can talk but choices not to. so to understand his world all day find out if you have the chops to have your needs meet without kid manages it everyday. take some time to understand , to find some empathy, and maybe some courage. so next time you see a kid so unique you say hi instead of stare. and if he only raises his hand you know what he means because you spent a day in silence.

  30. I think we have to do all these things, we have to keep reminding people that words matter over how we describe others and keep pushing to have people with disabilities treated like anyone else. Seeing past the disability to the person, every time. See the ability and the character and not the limitation.

    You are doing amazing things right here with your blog. Block the naysayers and keep going.

  31. this is so amazing! i just found your blog today secondary to the post about the R-word being on AOL. you go girl! i am a physical therapist who works with kids - for 27 years now.
    i am hopeful for the special needs kids i love that the world can get better. there was a time when things were said about women (and that was okay), and there was a time when things were said about people with different color skin (and that was okay), and those times are becoming fewer and fewer. i want the R-word to go away because people realize that it is offensive to people with special needs and their families.
    i also hope to live long enough to see another president in a wheelchair - this time without a blanket over his lap to hide it!

  32. Just found your blog, wish my kids and I could meet your Max, you and he sound like people we'd love to know!!! Kids are truly amazing on the acceptance front. I have a friend met at antenatal classes whose baby had a stroke in utero also, her speech is affected, she drools also, she took a long time to walk, to me very obvious and visible things. The girls are 6 now. The other day strokes or disability (I forget) came up and I said 'you know how Catherine walks with a limp' Charlotte responds 'No way, does she really?' Awww, bless!!! Thats the vision I want to have too!!

  33. Well I remember my daughter, when she was 7, was assigned a girl in the special needs class to help. She absolutely loved this little girl. She made her "worksheets" everyday and they grew close. So I believe prejudice is definitely learned and we have to correct every time we see a trace of it. Also, for parents of "non-disabled" kids, children are much more understanding when they have a personal connection with a kid.

  34. My daughter is 2 and has cerebral palsy. She can't sit up unassisted. I don't want people to focus on that, because she's cute as heck and has the absolute most hysterical laugh ever. So to make people treat her more like a kid - I complain about her like any other parent would. I talk about how she screams she wants juice, then throws it when I give it to her, then asks again for juice. And again. About how she throws a fit when I take away a toy. About her calling "mommy look!" and then tossing her cereal bowl. And how I ask her to use her arms to help her sit up, she says "no!" and laughs; and then I'll say she's being lazy, because even though it's harder for her to do these things, she is not even *trying*, and I know she understands me, so she is being just lazy. She is still as exasperating as any other kid, she just is sometimes exasperating in different ways. But it's all the same.

  35. My daughter is 1 and has CP. I dont want people to feel sorry for her as my daughter has a good life so far. Pity is a dangerous emotion and demeans my cute baby girl as well.

    Alaska mama- thats a good idea. Mind if I use your strategy when I'm out with her and someone pities her.

    Anon- special needs class sounds awful. It isnt okay to use phrases like that unless you want pity. Yet I'm sure you dont want pity.


Thanks for sharing!

Related Posts Plugin for WordPress, Blogger...