Wednesday, October 5, 2016

You don't have to give my child free donuts


Dave and Max walked in the other day from a Dunkin' Donuts run.

"The woman gave us free donuts," Dave said, handing me the bag with a sheepish smile.

"What happened?" I asked.

Dave explained that the staffer at the counter had watched as Max informed Dave he wanted chocolate milk. "He doesn't talk," she said, although Max was talking, in his own way.

Dave noted that Max talks. Then she asked Max which donut he'd like and he pointed to the jelly kind. She gave him two, charging Dave only for coffee and a chocolate milk.

She was just being kind, of course. Except she likely gave Max free donuts because he has a disability, and she felt badly for him. And that is what concerns me.

Now, there are far worse things for me to take issue with than people offering my boy sugary goodness. But what gets to me, as it always does, is the pity. The thinking that having cerebral palsy is such a misfortune and that his life must be sad and terrible, so he deserves free donuts.

I'm thinking about this on World Cerebral Palsy Day, which is dedicated to celebrating the lives of the 17 million worldwide with cerebral palsy and those who support them; creating a voice for people with CP; and making changes that improve their lives.

I want all of that for Max. I also very much want people to treat him normally. It's doubtful that woman at the counter regularly hands out donuts to teens who walk into the store. Max may have physical and cognitive differences because of his form of cerebral palsy, but at heart, he is a teen and he deserves to be treated like any teen.

Sometimes, strangers offer up prayers instead of donuts. A couple of years ago, I spoke on a BlogHer panel with Katinka Neuhof, who writes at The Fabulous Adventures of a Four Legged Woman. She told of rolling down a street in New York City in her wheelchair, with her son by her side, when a woman approached and announced that she would pray for her.

If you're the parent of a child with CP, this may have happened to you on occasion, as it has to us. There are people who think those with cerebral palsy are broken and need to be made whole. There are people who think those with cerebral palsy deserve prayers because they have suffered a great tragedy.

As the mom of a child with cerebral palsy, I don't see tragedy—I see a boy who is every bit as wondrous and complete as my other children. And, on occasion, irksome. (See: "teen.")

Besides gratuitous prayers and jelly donuts, the other challenge Max faces with people who don't know him is that they sometimes don't know what to say or how to behave. When he was younger, they'd ask "Can he understand me?" as he stood right there. Now they may smile at him kindly, stare or not approach him at all. Things can get awkward.

Writer/activist Cara Liebowitz of That Crazy Crippled Chick tells of the time she went to the library with her mother to renew her card. She was feeling tired and lazy, so they decided her mom would walk across the street and do the renewal, only Cara needed to sign something. "So I got out and schlepped across the street and it was really fine," she recalls. "But when the librarian saw me with my crutches, she obviously felt bad for making me come in. And she goes to my mom, 'I didn't know she was....' And she trailed off and tried again. "You should've told me she was...." She was obviously trying so hard not to be offensive. My mom and I reassured her that it was okay, I signed the form and we hightailed it out of there, barely making it past the door before we burst into hysterical laughter."

The awkwardness and misplaced kindness stems from people's discomfort with anyone different, and wrong assumptions. A lot of us, myself included, weren't raised knowing anyone who had a disability. We may not have been taught by our parents about what is more alike than different.

Cara notes that she sees people's perceptions of her change based on how visibly disabled she looks. In college, when she used a walker or crutches instead of a wheelchair, she says, "people would be so happy that I was walking and comment on it like, 'So good to see you up and about!' as if I was recovering from a bad flu or something. The thing is, walking is actually harder for me. I don't like to walk and I can do a lot more things when I have my chair. But people are so set on the idea that walking is better."

People are also so set on the idea that talking is better, even if Max has a speech app that enables him to communicate more easily than he can by speaking.

People don't get it. So they get flustered. Or they instinctively choose kindness and pity, instead of parity. I'd venture to say this is true not just of kids and adults with cerebral palsy but ones with Down syndrome, autism and other disabilities as well.

My child with CP does not need sympathy. He needs ordinary respect and people who don't avert their eyes or act overly sweet. Max's sister is one of the few people in his life who cuts him no slack. "Max, you're a gen-ius!" Sabrina said the other day when Max pointed out that it was raining. She was being sarcastic, and I so appreciated it. Why shouldn't people be sarcastic with him? Why shouldn't they joke around with him and even tease him, as kids tend to do? 

To be sure, youth with disabilities do get special accommodations—say, at amusement parks. Why is that OK? Well, it levels the playing field, enabling a person who is scared of crowds or who gets fatigued waiting in line because his muscles tire easily to enjoy the amusement park, too.

Giving free donuts to a boy because you feel sorry for him is a whole other thing. It's a pity present. It doesn't equalize; it demeans. And yes, I am sensitive to this sort of behavior because we have often encountered it over the years—have free ice-cream, have a free toy, have a free ride, have a free whatever because you have cerebral palsy. I mean, if Max had been wailing and the DD staffer simply wanted to make his day better, sure, bring on the free donuts. Most of us have gotten freebies over the years from store people, in the name of goodwill. But Max was just standing there, being his usual self.

Kind gestures that emanate from outdated viewpoints about people with special needs aren't the sort of deeds I want for my son, as well-meaning as they may be. They keep him rooted in old-school perceptions that people with disability are unfortunate. And that is not a message I ever want Max to pick up. I also don't want him to grow up thinking he can get free stuff because he has cerebral palsy. Dave and I are glad to use these occasions, when possible, as teaching moments, thanking the individual even as we point out that Max is a capable person, in his own way.

The manifesto of World CP Day envisions equality that I dream of for Max. As it says, "We have the same needs: To be loved. To connect. To be part of something. We share the the same hopes and dreams. The same interests and passions. We all have a similar hunger to explore thoughts and debate ideas. To contribute. We all have the same commitment to living a life of purpose and meaning. These are not just things we have in common with each other. We share them with all of humankind. Because we are not different at all. We are the same."

As for those jelly donuts, Max wasn't aware of what happened. I hope perceptions of people with cerebral palsy continue to evolve over the years and when Max is older, there are far fewer people offering him I-feel-bad-for-you donuts. But heck, if they keep right on handing them out, I hope Max looks them in the eye and informs them, "You don't have to do that for me, I can pay for them—but thanks!" And then he walks out of the store with his stash in hand, without a doubt of who he is.

Also check out: What cerebral palsy is and isn't

Image: Flickr/Dave Crosby

56 comments:

  1. This is a complicated issue...while I completely respect and understand your frustration because you do not want people to pity Max, can you really fault someone that much for a gesture that was mainly rooted in kindness? I think you are right, and the DD employee probably did feel sorry for Max, but it was also sweet of her to pay for their order. Pity is not necessarily a terrible thing to feel, especially if it evokes empathy and kindness. My grandmother has experienced similar shows of kindness from people in restaurants and stores, and while I'm sure it is partly because of "pity" because she is in her 90's and has a lot of difficulty getting around, she always appreciates the generosity and empathy, especially from strangers. I was in Starbucks one day with my three-year-old and he was overtired, cranky and crying. I was nine months pregnant, exhausted and frustrated. The barista smiled and said, "this is on me." She paid for my tea and also gave my little boy a cookie. Did she do it because she felt bad for me? Yes. But it was also a kind gesture that I was very grateful for. The world needs more kindness. --Kate

    ReplyDelete
    Replies
    1. Kate, you couldn't be more right, the world generally needs more kindness. I love that the barista did that for you when you were pregnant. But being kind to an elderly person or a pregnant woman in a situation of need is one thing; being kind to a person with a disability JUST because they have a disability is another. Even though the gesture may be well meaning, it implies the person feels bad or sad for the person with disability, and that is at the heart of what concerns me. I wish for a world in which people didn't automatically perceive Max as being a person in need of kind gestures merely because he has a disability.

      Delete
    2. Random acts of kindness are a beautiful thing, regardless of who it's intended for and a prayer or blessing of any kind should never be shunned..I'm a mother of a special needs child and I'm grateful for anyone who does either or both and would remember to try to return the gesture..try to remember the good souls out there who believe in mankind

      Delete
  2. I agree, I don't want my son to get things because he has autism or because he is non-verbal. But it would be cool if people gave free donuts because they realized what it was like to be a parent of a child with extra needs and how nice it is to just get a free treat, no strings attached. Just a way to spread a little joy.

    ReplyDelete
  3. Indeed, I've been given doughnuts in a Dunkin dounghnuts once simply because I looked exhausted ( and I was, pulling an allnighter at the end of 2 65+ hour work weeks will do that) and once because I was carrying a baby who was screaming like banshee for no discernable reason despite my best efforts the shush her - the baby was just a couple of months old, so the doughnuts were not a bribe for silence, just a very welcome moment of solidarity.
    I've also had my kids be given doughnuts simply because they were being exceptionally well behaved in a very busy DD (dumb luck for the win!!). It seems to just be a thing they are allowed to do.

    It's a very fine line. In a world were people worry about loss of human connection and the lack of simple kindness is it really fair to lay minefields of parameters that need to be navigated just to appropriately offer a nice gesture without offending? Although she did ask about Max's speech perhaps she also enjoyed his smile, or was happily reminded of her own childhood doughnut outings with her dad, and wanted to do something nice. Or perhaps it was the end of her shift and she hadn't given away her free doughnut for the day yet.

    I understand why feeling like someone is pitying your child, or giving him things he did not earn simply because he is different is a negative feeling. But not everything in life is earned either. Ascribing motives to someone else, who's mind is not yours to know is a dangerous business. Why can it not be that today was simply Max's lucky day, and tomorrow it will be someone else's?

    ReplyDelete
    Replies
    1. Hi. I understand where you are coming from, and you're right, I am essentially ascribing motives. But her comment that Max "doesn't talk"—as Max stood right there—and her manner made it clear to Dave that she had certain assumptions about people with disability, which lead to the free donuts. Max wasn't doing anything that would have particularly charmed her. I consider this just as dangerous territory: to give something to a child just because he has a disability. I'll leave you with this comment a mom posted on this blog's Facebook page as more food for thought: "This happens all the time when I'm out with my 7yr old daughter who is in a wheelchair. It gets hard when I'm out with her and her two younger brothers sometimes people feel the need to give her something, but they don't think about her two brothers who are with her. We were at the fair recently and 3 separate kind people came up and gave her stuffed animals they had won. The boys were in tears because no one was doing the same for them. I understand wanting to be kind, but it gets hard !!"

      Delete
  4. Or some people just like giving free things to others purely out of generosity? That sounds like something I would do. Still, I'm the kind of person who believes in working for nice things. I don't like getting things that I know I didn't earn, but should have because it displays a lack of integrity. The way it works in music is that you perform well to improve in position and there is no alternative. There is no giving stuff for free. I am investing my blood, sweat, and tears into a second solo. I'll get it or I won't. I'm working for it. I like getting free things on occasion (i.e. Korean makeup brands give you free samples when you buy their stuff.), but, otherwise, I am willing to get a few callouses and headaches to yield a reward.

    ReplyDelete
    Replies
    1. I grew up with that philosophy, too—work to get what you deserve. And I think that is an important lesson to teach all children.

      Delete
    2. I just don't want this to escalate to the point where a disabled person gets mad at Tony for sending free samples thinking it was out of "pity". (These brands send free samples because it's a thing their company does.)

      Delete
  5. i have loved following your blog, it makes me much more familiar and comfortable with disability and hopefully it has changed my way of reacting to those with disability instead of acting weird and uncomfortable......very good perspective, Thanks!

    ReplyDelete
    Replies
    1. Thank you, Jody. This is really heartening to read!

      Delete
  6. Max would probably tell you to CHILL, you are totally messing with my free donut gig Mom! Seriously, if/when he catches onto that, you're in trouble! I mean, pity, who cares when It's FREE DONUTS! I bet he could work that with NO shame! Truly though, I know you see pity & I get it, but I see her as just wanting to connect with Max & with Dave. Not so much "Poor little handicapped kid!" More like I see you & I know you must have it harder than many people at times. Here, have a donut & be happy. Take this donut & make ME happy! My "typical" kids have been given free stuff before for no apparent reason (meals, small toys, $2 bills, etc.). Sometimes people want to give a little something because it makes them feel good. I hope they go back. Sounds like Max may have a new friend & who wouldn't love a friend that works at a donut shop!

    *the "I'll pray for you/him" would irk me though. I would tell them I'll pray for you too!

    ReplyDelete
    Replies
    1. Ha! I like that response and should that happen again, I am using that! Yeah, Max would not be pleased that I am speaking out against free donuts! I know kids get free stuff. Sabrina has, too, on occasion, when she was a little kid. But Max is a teen boy. And I just don't think it's typical to do that for teens. Also, as I mentioned in the comment above, her comment made it clear where she was coming from.

      Delete
    2. I'm hesitant to comment on something like this, since I'm not a mom to a special needs kid. I can only imagine how irksome it is to hear people's opinions on something they truly can't relate to. I guess what I wanted to convey most is to not discount the donut lady's attempt to connect. Yes, it may be 'pity' or it may not. My husband has an older brother who is blind & developmentally delayed. He is 50 now. He got so many handouts when they were kids & I mean BIG ones - throwing out the first pitch at an MLB game, onstage at a major country concert, free guitar, etc. etc! My husband & his sisters definitely found that hard to swallow, although hubs took full advantage of getting to be first in line for roller coasters! Just one of the challenges of being a sib to a SN kid. Anyhow, as D got older & especially since he is blind (he has no eyes) it is much harder for people to connect with him as you have to be really close to him or even make physical contact & that is difficult, it really is. D was at my son's baseball game this weekend with my in laws & another dad took him to the snack bar & bought him a soda. Now he surely wouldn't do that for any other 50 yr old man but the impact it made on D & my husband was huge. D is not Max, I know and the situation is different too. I guess I'm just saying to try to see past the part that gets you fired up & appreciate that she reached out in a way, even if you wish she hadn't in THAT way. If they return, he may or may not get free donuts but he may show her that he can communicate too & she may learn a thing or two. I do love your blog & learn a lot from it. I hope my comments are not offensive. Just giving you another perspective.

      Delete
    3. You're proving her point when you say that the DD employee's motivation was "More like I see you & I know you must have it harder than many people at times. Here, have a donut & be happy. Take this donut & make ME happy!". Option A = I feel bad for you. Having a disability is so dire that this small gesture (a free donut) will be the thing that makes your whole day worthwhile. Option B= I feel bad for you. I don't recognize or know what to with that feeling so I'm going to assuage my guilt by giving you this donut and then feel good about myself because I did something nice for the poor disabled kid. That's exactly the problem the author is trying to get readers to understand. Having a disability doesn't automatically make life more difficult or less fulfilling, so the pity is completely unnecessary.

      Delete
  7. My kiddo, who is typically developing and just a bit younger than Max, gets free stuff because he is adorable and excited and appreciative (just like Max). As he gets older, I guard against this free stuff, too because I don't want him to use his powers selfishly. So I understand the lessons you are trying to teach Max as well as concern about what you are calling pity.

    I recently read this essay that has me thinking about the generosity of receiving: http://thisibelieve.org/essay/39783/. In it, Kevin Kelly, writes, "When the miracle flows, it flows both ways. With each gift the threads of benevolence are knotted, snaring both giver and recipient. I’ve only slowly come to realize that good givers are those who learn to receive with grace as well. "

    I am trying to embrace the humbleness of receiving right now, specifically with knowledge on a topic I know very little about but a friend knows much more deeply. It's a tough slog for me. And, I'm failing a bit in writing this comment to you!

    For someone who receives more often (my son, as an example), I think a way to keep these threads knotted might be to teach him to give more often, in the human web.

    ReplyDelete
    Replies
    1. That is a beautiful essay, thank you for sharing it. Zb, you make a wonderful point about encouraging our children to be more generous. I struggle with Max being the recipient of so much attention (and the occasional freebie). I need to work harder at counter-balancing it—or knotting the threads, as Kevin Kelly so wonderfully put it.

      Delete
    2. Ender-Chan... Thank you for responding but what are Korean beauty brands and how are they connected with Max?! Ellen Feldman... Thank you for responding but your explanation unfortunately still makes no sense to me. It sounds like you have encouraged the wonderful firefighters to become friendly and develop a relationship with Max over the many encounters you have allowed but the donut woman is shut out after her first kind offer with no chance to develop a relationship. I am curious how you knew, after the first encounter, that the firefighters did not pity Max and that the donut woman did.

      Delete
  8. I loved your perspective on this topic! I have a daughter who is two with holorposencepphaly, and she does not have a corpus collasum. She is two, and while visually, you would never know there is anything wrong just by looking at her, she cannot walk, and is moderately delayed in all five areas of development. We're at the point now where people aren't afraid to approach her, they think she's cute, and all have this great anticipation that she'll one day walk and catch up (and we do too!), but I always wonder when the switch is going to happen from her being a cute baby that people want to interact with, to a child that they don't understand and try to avoid.

    Paige
    http://thehappyflammily.com

    ReplyDelete
    Replies
    1. Paige, I hope you do not worry about that.... While we have encountered awkwardness, stares and avoidance over the years, we have also met people who treat Max like other kids. And while I wish ALL people were like that, it's not realistic. What's empowering is that, as parents, we have the power to help change perceptions about our children. And we can raise them to have the ability to change perceptions, too. Max's sense of what others' think about him is still in development, but he is full of confidence in who he is and I hope that never goes away.

      Delete
  9. I this this post is my favorite of the year because although it is ostensibly about pity, it touches on so many other aspects of living with CP. I agree that Max and Dave likely got those free donuts out of pity, which can be very challenging to deal with. Max is a teen like any other teen, so I can feel your frustration with getting items for free once people realize that he has a disability. The subject of disability still makes people so visibly uncomfortable, but I love a that you're doing to dispel misconceptions. I hope that we can someday all live in a world where disabilities are seen as only a part of the whole person, people with disabilities are treated with dignity and respect, and happy, life-loving people with disabilities are not pitied.

    ReplyDelete
  10. Point taken, lesson learned. I should burn in hell along with that wicked donut lady. I sincerely hope that Max nor anyone else should ever have to suffer the grave injustice of a free donut ever again. Damned if you do, damned if you don't.

    ReplyDelete
    Replies
    1. LT511, I welcome people sharing opinions/perspectives here! This is not about "injustice." In the end this is me, Max's mom, sitting here and wishing people treated him like every other child. That's the bigger picture. It's not about donuts per se so much as people's perspective of my son and other youth with special needs, and perhaps that's hard to understand unless you've lived it. Pity makes my son someone who is not an equal to others. And that gets to me.

      Delete
    2. Wow, what an overreaction! Seriously, get some perspective!

      Delete
  11. I am a mother of a special needs child....a child who must always use a wheelchair. We have no pity party at our house....doing everything in our own special way...we don't get caught up in what we cannot do....we do all the things we can! I have had the occasional person give us something for free because they felt sorry for my son. I have been somewhat embarrased by this but most definitely think about the good intentions of the individual.....we don't need anyone's pity but kindness is always accepted!

    ReplyDelete
  12. I am an early childhood educator and love reading your blog. I always find myself nodding my head in agreement along with your words. This is the only post that has left me shaking my head in confusion, which makes me realize I am definitely missing your point. You often write about how much you appreciate the wonderful firemen going the extra mile(s) for Max, knowing they don't do this for every child. After so many posts about the kind firemen going above and beyond for Max, I don't understand why you are upset with a woman for giving him a free donut once. I just see them all as kind people, but I'm happy to have more clarification. (As I mentioned, I've agreed with everything else you've ever written!) Thank you!

    ReplyDelete
    Replies
    1. The donut thing is kind of like getting free samples from Korean beauty brands.

      Delete
    2. OK, Anon, I'll try to explain. The firefighters we know have become friendly with Max, and because of that yes, they have gone the extra distance for him. I think they would treat any boy the same who so regularly and enthusiastically visited them (although we have never seen another boy or girl there as regularly as Max has been, over the years). They KNOW him. The stranger at Dunkin' Donuts knew just one thing about Max by observing him: That, from her perspective, he could not talk. And that is seemingly what triggered her to hand over free donuts. It's kindness, yes, but kindness driven by pity. And I do not want people to pity Max because he has a disability. It makes him less of an equal in society. It's a perception problem, rooted in oldthink that people with disability are unfortunate. And that is what I am reacting to.

      Delete
    3. Thank you for your reply Ender-Chen but I don't know what Korean beauty brands are and how they tie in with the firefighters and the donut lady. Ellen Seldon... Thank you for your reply. I'm still confused about how you decided to first encourage the firefighters' relationship with Max, and how you knew this was not pity, and how you decided that the donut lady was pitying Max from her first encounter with him when you were not there.

      Delete
    4. Etude House and Tonymoly send free samples with your order. Sometimes, you get free things because it's protocol for someone to give them.

      Delete
    5. Although I was not at the store, it was clear from what she said to Dave ("He doesn't speak") that she felt badly for Max. Why else would you point that out? She also assumed that Max could not understand her, given that she said it as he stood there (which also implies an old-school mentality). At this point, Dave and I know when people are treating Max with pity and, yes, maybe in the end you had to be there with Dave to fully understand it, I just cannot explain it any better. In terms of the firefighters: All I know is that from the first day we visited them (when Max got it into his head that he was going to be a firefighter someday), they spoke to Max in a normal tone of voice (i.e., did not talk down to him) and as if they were talking to ANY kid. They did not look at him sadly, as people have been known to do. They have never said anything to me out of Max's earshot that made me feel they pitied him. They seemed to think he was a cute, friendly child interested in what they do. Have any of them ever felt pity for him? Perhaps. But their manner has not belied that. And I'd like to think that Max has shown them just how amazing and non-pitiful children with special needs can be.

      Delete
  13. I have a question for you. If Sabrina was saying something mean to Max about this C.P and/or cognitive abilities, would you let her say such things or would you intervene? You want Max to be treated as a "regular teen" and sometimes the siblings of "regular teens" say quite hurtful things to their siblings. So would you like Sabrina or even Ben one day say mean things to Max?

    ReplyDelete
    Replies
    1. I would let the two of them try to work it out, as I typically do when they have fights, argue or get on each other's nerves. It's been a good way for Max to learn how to defend himself. He tells her, "Not nice, Sabrina!" But I would talk with her separately, then, about what she'd said. I don't see this happening. She has pretty much accepted Max for who he is.

      Delete
  14. I, too, have read your blog for years, and have learned much. I do see how living this every day would be irritating, and I have no doubt it happens for the reasons you've mentioned. And no doubt much of what I've learned is because of your repetition of key themes! Every once in a while I feel a little discouraged though, on behalf of those of us on the outside of your experience... The change you want now (which is perfectly natural) evolves slowly, in inchstones... People need to practice things to get them right. So that means they'll be clunky and awkward and just do things wrong. As you return to DD, perhaps you'll get more donuts, and maybe the nice lady will come to understand Max better. And another in the restaurant might notice how she interacts, and learn a little too. Inch stones. We move forwards together.

    (On a lighter note, I recall a few senior citizens in my childhood wanting to give me money, and my mother always protesting... Even in my childhood mind, I had a sense of "they want to do this, and I'm happy to receive it... why are even getting involved?" :) But in retrospect, if she had stopped them, I think it would been a hit on their dignity to be told they can't give.)

    ReplyDelete
    Replies
    1. Ah, I'm sorry if you took this post (or others) as my wanting change "now." Yes, I am voicing a reaction to what happened, reflecting on it and wishing big wishes for Max and other people with disability, but I fully understand that change takes time. A few Facebook friends have mentioned that this post has made them think twice about the topic. If these posts get people thinking about their perceptions of people disability, I'm glad for that. In other news, we do not live near the DD Max and Dave went to! But yes, if we go back and the same person is there, perhaps it could lead to an interaction that would better help her see why Max doesn't deserve pity.

      Delete
  15. I am not a fan of receiving help and have anyone feel sorry for me. In life even if I have no impairment there will be life event that led up to people who will feel sorry for me. But as lately I feel that to love, I need to know to receive love. Now I accept help, receive a gift someone give me without questioning why because I think a kind act of any form is a kind act. For someone to understand a person with or with out disability it takes time and opportunity and to accept kindness is one way to open the door to communication and understanding.
    Thank you for sharing. I love reading about Max. He is my hero in many way.

    ReplyDelete
    Replies
    1. Tn, see zb's comment above about accepting kindness, there's a link to a beautiful essay on the topic. I couldn't agree more, it takes time to change perceptions. That wasn't going to happen in one Dunkin' Donuts run, but maybe we'll go back there at some point (it's not near where we live). And maybe in writing about this episode and my feelings about the topic in general, it will open the door to more understanding. That's one of the reasons I write this blog.

      Delete
  16. Maybe the woman was not pitying Max, rather, she was infantilizing him. I hear you when you claim for him to be treated like any other teen. The difficulty, however, is that from what you write he thinks, behaves and have the interests that are typical of a much younger child. Teens don't talk about fire trucks, don't insist in being addressed as firemen etc. It is common for cute children to receive sweets by strangers, whether they have or do not have a disability. Your son would probably would not mind the gift, whereas a typical teen would find it weird. I understand your feelings, but I am not sure what a well meaning person should do: pretend your son is like another teen? That would mean not indulge in firefighting talks and engage him in conversations he probably could not follow. What is the thin line between infantilizing and being kind and realistic?

    ReplyDelete
    Replies
    1. Max does look a bit younger than his age, but not that much younger. So no, I don't think she was infantilizing him. And when I say that I wish for him to be treated like other teens, I mean: Say hello to him in a normal tone of voice. Assume he can understand you. Don't stare at him sympathetically. Make normal conversation—seen any good movies lately, how's school, etc. Joke about how he needs a haircut. Whatever! Max may not have the interests of your average teen boy, but there is no reason he should be treated in a baby-ish way.

      Delete
  17. I have the same reaction.

    ReplyDelete
  18. As a (very cute) child, I got a lot of freebies. Free samples at candy shops that were not offering samples otherwise, treats that the flight attendants snuck from first class on airplanes, etc. I understand your concern, but don't underestimate what a cute guy Max is. If you're worried about him feeling pitied, maybe try turning it around and telling him, "She thought you were so handsome that she gave you donuts! Crazy!"

    ReplyDelete
    Replies
    1. Ah, I know he's still cute! And yeah, maybe that played into this in some way.. Max did not know he got the donuts for free, but if this crops up again I am so using that line!

      Delete
  19. I appreciate this post and appreciate your feelings about it. Her decision to give out free donuts may have been driven by pity. But it also may be treating him as similar to other kids- my 9 and 6 year old typically developing kids have gotten free munchkins for no real reason. I was not tired, they did not have to wait on a long line. My 9 year old likes to order her dad's coffee - she gets free fried pastry! I believe that some kindness may be motivated by pity. But having recieved free stuff from DD- I think that happens to all kids.

    ReplyDelete
    Replies
    1. Free donuts for kids def. seems to be a DD phenomenon, as I now know from feedback I'd received! (And why don't they do that for their poor, tired parents?!) As mentioned in the post and in comments above, though, this woman's words and manner seemed driven by pity.

      Delete
  20. One of the big principles I think about with disability is that I don't think people with disabilities should necessarily be treated "like everyone else." This leads to things like ignoring our needs and not accommodating us, and also assuming that we all want the same things most non-disabled people might want in the same circumstance. People treating me like everyone else expect me to fill out forms by hand and climb stairs. That doesn't give me the warm fuzzies.

    Rather, I think the goal should be that people with disabilities are treated with the same respect as everyone else. Sometimes that means the same treatment and sometimes it means adapted or accommodated or downright different treatment. Circumstances matter a lot here.

    So I would put free donuts in this case as failing the "same respect" test. The gesture seems clearly motivated by pity, which is pretty much the definition of a lack of respect. The giver knows nothing else about Max except his disability. However, there are other times when free or discounted things would not be motivated by a lack of respect. Discounted transit, for example, which takes into account the fact that many people with disabilities have limited financial resources compared to people without. Or free admission to events for a person caring for a person with a disability who could not otherwise participate in the event. Those are examples of free things given DUE to respect.

    ReplyDelete
    Replies
    1. This is so well said and an important point, thank you. I did qualify that accommodations need to be made for people with disability to level the playing field, although I did not go into much detail and perhaps I should have expanded on that more. Respect IS the word.

      Delete
    2. Nicely articulated Nightengale... thanks. I think your "same respect" reframes the discussion nicely, explaining how to treat people appropriately when everything is not the same.

      Delete
    3. I agree, respect is key. But with intellectual disabilities at play, the line between kindness/accomodation and pity might be a hard one to draw. To treat a teen who inists on being addressed as if he were a firefighter like any other teen is not easy. You can say hi, how was school, but if you want to engage in a meanful conversation with him/her, you HAVE to take intellectual limitations into account. Otherwise, there is no conversation, just small talks. This goes way beyond the DD lady. What are peers supposed to do when confronted with an intellectually disabled school friend? If they want to truly engage with him/her, they simply cannot address him/her as if s/he had the same interests, quickness, capacities and knowledge as typical peers. The best case scenario is they will treat him/her like a younger child. This is, at least, the best treatment we have encountered.

      Delete
    4. I would argue, talking to someone about their interests, even if those interests are not age-typical, IS respect.

      When I was an (undiagnosed) autistic child and teen, conversations on age-typical topics went no where. I didn't follow or understand contemporary culture, slang or clothing. Treating me like everyone else meant trying to make me be interested in those things (and invariably ridiculing me for my differences.) Equal respect would have led to conversations about classical music or Sesame Street, neither of which were considered age-appropriate for me at 8. Equal respect means recognizing differences, accommodating differences, and not treating differences as "less thans."

      Delete
    5. Touché, once again. I couldn't agree more.

      Delete
  21. I think this is when the IEP come in handy. I think if I go to doctor office, the doctor will not help if he keep using big medical term because he want me to be at his level. Doctor normally use simple, easy to understand term not because lack of respect but they want to make sure the patient understand the message. I think it will be very difficult to figure out which subject is enabling and which subject is overwhelming that's why an IEP plan will help parents to know what to discuss with their child about and also can use that plan to help others ppl to understand better. Child grows and develop very quick and each child is so different, so I think IEP is more for the parents so they can be on the same page with their kids to help them to max out their potential in that period of time.

    ReplyDelete
  22. I don't pity Max; however, I pity you. Accept your child is different from "normal." Appreciate people trying to make him happy. You stated he didn't even know the doughnuts were given freely - thus, this is your perception, not his. You want the neighborhood kids to play with him (a teenager), but he is not able to keep up with a five year old. No, they are not being mean, just being little kids playing at their level. Please don't fault others for the child God gave you. Learn to take every act of kindness as a blessing without judging others. You don't want Max to feel judged for his disabilities, but are unwilling to accept others trying to make him feel a little joy. Sorry. I have followed you through your blog for a long time and never commented before, but this blog totally tipped me over.

    ReplyDelete
    Replies
    1. Accepting your child's differences has nothing to do with accepting how others treat them. I accept my autism, but I don't accept people pitying me or treating me like I'm younger than I am. In fact, it's in large part because I accept my disability that I don't like being pitied or condescended.

      Delete
  23. And i thought people were giving me free stuff and discounts because i was so charming LOL :) . It bothers me but sometimes I just let it go because they mean well and i just don't have the energy to correct them

    ReplyDelete

Thanks for sharing!



Related Posts Plugin for WordPress, Blogger...