Tuesday, September 12, 2017

You don't have to give my child free mac 'n cheese


This is the latest edition of the ongoing series "You don't have to give my child free ____." I wrote about the phenomenon last fall, when someone at Dunkin' Donuts gave Max free donuts. People suggested that the DD woman was just offering a cute boy a treat. I thought she felt badly for him. Pity presents bother me.

It happened again over the weekend, this time with mac 'n cheese.

Trust me, Max does not look like a boy on the verge of starving.

We were at a food fair at the Jersey Shore. There was a stand selling lobster mac 'n cheese. "Do you have any plain mac 'n cheese?" I asked, as Max stood by my side and Ben sat in the stroller. "He's not into lobster." Dave was off finding parking; Sabrina was at a party.

"No, sorry, we don't," said the guy at the register. A man standing in the back explained that all the mac 'n cheese was pre-made with lobster.

"Awwww," said Max.

"I'm sorry," the guy at the register said again, watching Max. A woman standing next to him gave Max a sweet smile.

"He'll survive!" I said, cheerfully. Off we went to find some other food fix, and lo and behold we discovered mac 'n cheese balls, aka fried mac 'n cheese. A veritable superfood!

I sat down with Ben to devour fried potatoes on a stick (almost as healthy as kale!) while Dave and Max cruised around in search of other fine cuisine. When Dave returned, he was holding a container.

"Did you try to get mac 'n cheese for Max?" Dave asked.

Some woman had walked up to him, said "This is for your son," handed him a container and walked away.

Wow.

"I'll be right back," I said, grabbed the container and walked over to the stand.

People are only being kind when they do stuff like this for Max. But I don't want them to feel badly for him, because it is rooted in the thinking that having a disability is unfortunate. Nor do I want the day to come when Max becomes aware that people give him treats because they think having a disability is a sorry situation.

This is not to say that people with disabilities don't need and deserve accommodations at times—of course they do. For one, we've received passes to bypass lines at amusement parks because Max cannot stand for long periods of time; his muscles fatigue more quickly than other people's do. And of course, there are common courtesies people regularly extend to others clearly in need. When we got to the food tent, a guy noticed the cast on Max's foot and offered him his seat. That's exactly what most of us would do for someone with a cast.

What I'm saying is, giving a freebie to someone simply because they have an intellectual or other disability is other-ing—it's yet another way Max is made to feel different than other people. Why should he go through life feeling that way? If a vendor at a food fair wouldn't have gone out of his way to make plain mac 'n cheese for any child, he shouldn't have done it for Max. And my guess is, they wouldn't have done this for just anyone. I say that based on years of seeing Max be the recipient of such good deeds, and noting the sometimes sorrowful look on people's faces when they interact with him that say, "Here, life is hard enough for you, you deserve a treat."

As Max's mom, I may think life at times is more difficult for him, especially when I see him struggle to articulate a word or grasp an object. But Max doesn't see his life that way—he's just going about his business. And I never want him to think of himself as being a person who deserves perks because others consider his disability lamentable. People have never spontaneously offered his sister, who doesn't have disabilities, free anything for merely existing.

I approached the counter.

"Did you make my son mac 'n cheese?" I asked the guy at the register.

The guy behind him spoke up.

"It was easy enough, I found some cream in the back and made it," he said.

"That was very nice of you, but please let me pay for this," I said.

"No, no, that's OK, we were glad to do it," he said.

And of course he genuinely meant that.

I was stuck in the position of seeming ungrateful, but I persisted.

"Really, how much would you charge?" I asked. "You don't have to give it to my son for free. We're glad to pay for it, like any other people."

There is only so much you can get into when you're standing at a booth at a food fair. But I so desperately wanted them to know that Max's life is as happy and fulfilling as any boy's his age. I so wanted them to understand that it is important for Max's self-image, self-confidence and self-respect to be treated like other boys.

Dave and I discussed it later. "It makes me a little uncomfortable," Dave agreed. "We're just there, walking around like any family, and suddenly I'm aware that people are aware of his disabilities."

Where do you draw the line? Just before we entered the fair, Max was standing in awe in front of a fire truck parked on the street. The guy who owned it (a firefighter who decided to buy an older truck) offered to give Max a ride around the block and I couldn't turn that down. Maybe there was pity mixed in there. I guess I didn't have second thoughts about it because it wasn't something this guy was asking anyone to pay for.

In the end, I thanked the mac 'n cheese people once again and left without paying. Max really enjoyed it, so much so that he saved some to take to school on Monday.

It's stayed on my mind. Yesterday, I looked up the catering company that owns the stand and sent an email thanking them and letting them know how much Max enjoyed the mac 'n cheese. I noted that sometimes, people feel sorry for Max but that it's unnecessary because he leads a great life. I said I never wanted him to think that anything is "wrong" with him. I offered to pay or make a donation to a charity of their choice. I hope I'll hear back.

Maybe I once again seem overly sensitive. Horrors! Nice people give your child free mac 'n cheese! And donuts too! No doubt, offers of tasty treats sure beat stares and discrimination, which we've also experienced over the years. Of course, these gestures are well-intentioned. People aren't thinking of anything but doing good.

As the years pass, though, I hope awareness continues to grow about treating people with disabilities like any other people. I hope when I write about these stories, it gives people food for thought. If you wouldn't give a freebie to a child or adult without a disability, please don't give it to my son. Maybe Max won't get the custom-made mac 'n cheese at the food fair, but he'll benefit from something even better: He'll be just another face in the crowd.

Image: Flickr/Memphis CVB

26 comments:

  1. We have had similar experiences. Recently, on a trip to Disney, there was a very long line for the Disney transportation bus from our resort hotel to the Magic Kingdom. We were basically at the back of the line and the bus driver, who had just finished loading a guest in a wheelchair onto the bus, noticed my son (he is blind and uses a long white cane) and encouraged us to board the bus, before everyone else, via the wheelchair door. I politely declined. The woman in line in front of us gave me a strange look. I explained to her that my son's blindness doesn't mean he unable to wait in the line. I also explained that I don't want him to grow up feeling entitled to go to the front of the line. Right or wrong, it's just how we roll! Great post!

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    1. Great response. On the opposite side of the coin I do know a family with a child that is blind where this offer would have been greatly appreciated due to additional needs this child has.

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  2. This post is so interesting. It is something to ponder and there is likely no principle that will cover all circumstances (as with the fire truck example). But I would say that maybe "pity" is the wrong word. You do not know what another person's life experience or struggles may be. If Max touched their heart in some way and it resulted in a positive experience for both of them, I think that is something to embrace.

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  3. I wonder how often things are offed not out of pity, but with the knowledge that life can be expensive (and sometimes hard) when you have a child with extra needs. Could it be a "I would like to be a part of your child's village for this short instance and this is the best way I can do that" ? Perhaps the person offering (food, ride, etc) has/had a family member with extra needs and wanted to pay it forward?

    Just some thoughts.

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  4. A sticky one. I want to share a slightly different thought. As I have aged, I have become more and more handicapped. I walk with a cane. I use the wheel chairs when I shop. At first I did not want others offering me special treatment because of that. No longer. Why? Two reasons. Greater acceptance on my part that I now was seen as different and needing help; but more recently something else entered my consciousness. That something? The awareness that I could practice kindness by letting others give to me.

    And yes, I understand your thoughts about "Pity" completely and you desire for Max not to feel different or pitied or lead him to start using his handicap for secondary gains. At the same time, I suspect fighting these battles for him, so publically might have exactly the opposite effect, particularly as he moves in to teenhood.

    The middle road is usually best in many ways. It took a while for me to be gracious toward those who felt drawn to help me because I was in a wheel chair. Particularly when I did not need their help. Max is now old enough to talk about his difference and how it affects people, as well as him. Strengthening his ability to accept his differences and how others respond would be one aspect of the middle road and the mac and cheese episode would have been a great "teachable moment."

    Just my personal thoughts.

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  5. When I read the title of your post this morning, I won't lie, I groaned. Because I distinctly remember your post about the time a DD employee offered Max free donuts last year (which was my favorite post of 2016!) and it bothers me that people are still treating Max with this type of misguided pity. You're right; this attitude on the part of others does not serve him (or, for that matter, anyone else with a disability) well.

    You always articulate the problem with these types of gestures so well, and I hope that the world will start listening to disability advocates like you (and, of course, those who have disabilities) and come to understand why this behavior is harmful. Our society needs to make far more progress in this area!

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  6. What does Sabrina think about this?

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    1. It's really never come up. Mostly, these things happen when Dave or I are out with Max alone.

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  7. A couple of thoughts - is it the fact that the mac and cheese was free that bothered you, or the fact that they were kind enough to go to the trouble to make up a batch special for him? I can understand pride getting in the way of accepting "free", but the real effort on their part was going the extra mile to dig around for different ingredients and prepare a special variation for him. To them, the money may have been just a couple of dollars worth of profit, and just not that big a deal.

    By the way, I can't help thinking, we have no idea if they have a friend or family member with special needs. If you were behind the counter and been in their shoes, what would you have done? As a mom of "special" kids, if I saw another mom or dad with a special kid of their own, I would have wanted to do something nice for the kid. Not out of pity, but as a sign of solidarity, and as a way of saying, "I get it, I live in my own version of your shoes, let me make him/you smile today, or at the very least let me do something nice for your kid so he"ll have a happy memory of his time here. At the very very least, maybe he"ll at least have something to eat and you can avoid a meltdown because his food looks wrong to him." I guess I'm saying that I would want to do this for another kid if I could, partially in the hope that we live in the kind of world where someone would want to do something nice for my kids.

    My only other question would be, does Max have any thoughts on this topic? Given how uncomfortable this makes you, can you have Max pay the person for the food? It might avoid any awkwardness with the gifter, as the person will most likely just take the money, think Max is cute, and move on. - Alyssa

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  8. I wonder how often typical kids are given something like that? Where the vendor thinks "Hey, that child wanted something we don't have, but it's easy enough to make that." and perhaps that sparked a thought in them that kids might want plain mac and cheese and in the future they could offer that and as a "thanks for the idea" they offered some to Max. Not everyone is necessarily feeling pity for him when they give him something. My typical child has been given free things in similar situations before. Maybe the guy just wanted your son to enjoy some mac and cheese and that's all there was to it.

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  9. Had max been a typical toddler, what would you have thought? My experience is that SN kids are often infantilized: people act not out of pity, but out of the feeling that they are dealing with a younger child. And when a child has ID, that comes natural.

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  10. I just have to comment, because as a disabled woman I see repeatedly, abled's tendency to center their good intentions FIRST. Please understand what I think the point Ellen was trying to make: the UNINTENDED consequence of good intentions is an othering of us and our existence. The freedom to just exist as a face in the crowd is a privilege. A privilege not to be taken lightly.

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    1. And by privilege, I mean those that have never stuck in a crowd - in this case because they don't have a visible disability, don't realize what a LUXURY this is!

      I recently posted on FB that as general rule people should wait to asked by the person with disability (me) to 'help'. You wouldn't believe the push back from ableds I got, like.many of these comments:

      - people are just being nice
      - I was using a wheelchair briefly when I was injured, and I was grateful for the help.
      - you should learn to accept help, with grace!
      - they didn't mean any harm
      - so what? We should just watch someone struggling when I can help and make life easier?

      That last one in particular: Yes! If they didn't ask for help, they're getting it done their way. It might take a little longer but respect personal space.

      As for accepting help and kindness with grace. My disability is not something that makes me saintlike. It just is. Framing everyday life as, 'life is hard enough as it is, accept kindness when it comes along because more often than not, people will not extend the courtesy.' Oh boy, where to begin..

      I'll just say No, I do not have accept anything if I feel it wasn't warranted or I didn't ask for it. Why? Because I'm an autonomous human being. Don't put the burden on me for someone's good intentions

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    2. No, you don't have to accept anything *you* don't want. You don't have to do it to make the world a better place, or to make the other person feel good. You can not accept the help/accommodation/intrusion for whatever your reasons are, and you don't have to explain why if you don't want to.

      But, we are talking here about other people -- I've certainly seen others express different opinions, about the help they needed when their child was having a meltdown, or when they needed to go to the front of the line. I think no, thank you, should be accepted without question, but potentially without offense?

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  11. I'm sorry that this is something that you guys face regularly, but I think that you do an amazing job of teaching others that he doesn't need that treatment. Maybe you keep having these moments for the good that you can share in their lives, and less about what their doing in yours.

    Paige
    http://thehappyflammily.com

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  12. I guess I'd like to see more exploration of the difference between the custom mac and cheese and the fire truck drive? You mention money, but as another commenter has mentioned, the mac and cheese was an accommodation because it was custom made, not because it was free. I'm guessing it was free out of convenience (prepared without your request, so you couldn't be asked to pay, the delivery, . . .). If the money had been cheerfully accepted, would that have made the difference? In that case, Max would still have gotten something that was not available to others.

    What does differentiate between an exclusive experience you will accept v one you don't want to accept? Is it money? Is part of the difference potentially the degree of Max's desire for the fire truck v lobster-free mac and cheese? Both might be offered with a nod to Max's disability and a recognition that Max faces challenges and misses out on some things that others take for granted (though, of course, Max's enthusiasm also plays a big role).

    I sometimes hve the issues with money you describe -- because, money is not an issue for us, so when my kiddo is given something that we could buy for free, I would rather see that money distributed elsewhere. I think i a circumstance like yours, if the only issue was money, I'd have included a donation, say, to a food bank, in my "thank you", but, email.

    If I've said I'm not buying something, it's because I'm making a conscious choice, and don't wish to have someone else overrule my decision. In your case, I guess the parallel might be if you didn't want Max's food preference accommodated.

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  13. Here's the flip side. My friend is blind, and travels quite a bit for work. She uses a white cane, and needs assistance getting through security, getting to the gate, etc. She ALWAYS accepts when they let her move to the front of the line. Her view is that there are enough ways that she is NOT accommodated -- this very slightly helps to balance things out.
    Also, she almost always gratefully accepts help when someone offers, even when she doesn't need any help. She tries to always be friendly when accepting the help. She does this for a few reasons. First, she knows it makes the other person feel good about helping someone. That feel good feeling will hopefully carry over, so that the next time the person sees someone with a disability, they won't feel nervous or intimidated to offer help. Second, she wants blind people to be viewed as approachable. Because she doesn't know who's around her, she can't casually interact with people.
    So as for Max ... is this "othering" him? Yes, I guess it is. So what? He's a person who needs some help sometimes. Rather than turning down things like the mac and cheese and the firetruck ride, he needs to learn how to be grateful for people's kindness. Teach HIM to show his appreciation. He's old enough to be the one to thank someone. Believe me, there will be more times when this won't happen, than when they will.
    So, learn to accept things with grace. You, as his mom, pointing out to others that that they shouldn't do these things for him really DOES make him out as different. Other moms would just have their kids say "thank you" and mean it!

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    1. I like your point about accepting with grace. I share this philosophy.

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  14. I have C.P. and was raised by a single mother. To this day stuff like this still happens. It's never bothered me because I never saw it as a pity thing. I do random acts of kindness all the time. Usually when something touches my heart. I think it's perspective. I'd be more offended if someone assumed my intentions by suggesting I gave Max Mac n Cheese out of some expression of pity.

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  15. See, I read that impulse from the mac 'n' cheese folks differently. I think they felt like they wanted Max to be able to enjoy their food just like anyone else...and that he needed some small accommodation to be able to do so. The person up front told you they couldn't help you, but the person in the back decided they could...and followed through without ASKING you if you wanted them to go that extra mile, so couldn't in all fairness ask you to pay for THEIR choice to do something nice for your kid. In other words, I feel like they made the mac and cheese for him maybe because of his disability, just like he got that ride on the fire truck maybe because of his disability. But getting it for free was simply because you didn't have a choice about their making it. It would be wrong for them to ask you to pay for something you didn't actually ask for. (I feel like I'm not making sense, exactly, but I think there's a difference between their making it for him period, which you seem not to have an issue with, and giving it to him/you for free. And I think the latter was about agency and choice and not about pity.)

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  16. I was born with a physically obvious disability and have some "invisible" disabilities/differences as well. Sometimes, to be very blunt, life is hard. If I see an opportunity to make life a little easier or more enjoyable for someone I take it. It's okay to let people be kind. We have disabilities. We are different and we will never just be another face in the crowd. That doesn't have to be a bad thing. Looking for pity in every kind gesture can certainly make the world seem a little uglier.

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  17. As a person with a disability that lived for 40 years without one, my take is a little different. I read so many blogs where people are irritated if someone parked in a handicap spot, but didn't look like they needed it. And others that were upset a few years ago when Disneyland changed their rules for handicapped people waiting in line. I keep thinking about the mac and cheese. I have a few friends with kids that are autistic or have asbergers. It's very hard when you aren't at home and your child will only eat 2 things and neither are to be found. I see these folks going to the trouble to make this special dish not because Max has a handicap, but because he literally can not or will not eat anything else. They don't know if you could walk a few blocks and find something he could eat. They don't know he has CP. All they know is he wants Mac and cheese. Maybe they have seen a few melt downs when they didn't have what a child wanted. Maybe they were so impressed with Max taking the news in stride, they wanted to do all they could for him. It's plain from your posts that you see this as a hand out that you don't want or need. But the next person might have been thrilled that someone did this for their child AND wouldn't let them pay. We read articles everyday of people paying for the person in line behind them and they have no idea if that person needs help financially. They did it out of kindness. They are paying it forward. Would you see that as pity? I would be confused/sad/hurt if I had gone to the trouble to do something special for someone and it upset them. I think we sometimes analyze things too mych. I say take the mac and cheese, give them a big thank you and pay it forward. Simple as that.
    I love your blog and read them all. I usually agree with you, but not this time. Sorry. It's so hard for me to write this because I try to avoid any kind of conflict but I just felt strongly enough I had to get it off my chest. I Know you guys are trying hard to raise Max to be a solid member of society and I think you are doing a great job.

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  18. Adding my two cents on this subject. I have to admit, people are often kind to my daughter, giving her coffees or free piercing, or whatever. I never thought it was out of pity, I thought these gestures were acts of kindness. There have been times I've offered to pay and was told, "Please let me do this for her. I want to." So, I do--and there have been times, we've paid it forward in another situation and it felt good.

    Yet, I do see your point. I think people may want to do things for Max because he tries to do so much for himself. He does not consider himself a victim, and people are impressed. I certainly would.

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  19. This is so well stated!!! As a lifelong wheelchair user, I've received many Pity Prizes. I get so insulted that, at the time, I'm unable to calmly explain why Pity Prizes are so detrimental to society. I think I'll just hand them a copy of your explanation and leave it at that, thanks. Now on to tackling the Pity Smile. Offenders never cop to when I confront them about the misconceptions that perpetuate it.

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  20. Yesterday a gentlemen offered to carry my heavy suitcase up a broken escalator in the NYC subway. I am neither old nor disabled, I had not asked for anybody's help and I could have carried it myself. YetI gladly accepted this gentleman's kind offer, I thanked him profusely and sincerely. Actually, his kindness made my day, because it made me feel as a human being who is part of a community where people care for each other. Shouldn't he have offered his help because assuming women need help infantilizes them?

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  21. SO many great thoughts here. For starters, yes, roping Max into thinking more about this stuff as he gets older is important. And of course, if people offer to help him because he needs that assistance (and he is open to being helped), I am ALL for it and teaching him how to accept these things with grace. I'm not bashing kind gestures in general. The world needs more of them. I am just not for gestures that are rooted in feeling badly for a person who has a disability, because ideologically I do not wish for others to view Max that way (or for him to ever view himself that way). It WAS nice of the people at the stand to make Max a special batch of mac 'n cheese. I'd like to think they would have done this for any child. But the fact that they gave it to us for free (along with the sympathetic looks I noticed on their faces as Max was standing at the counter) really made me think this gesture came from a place of pity. To be sure, over the years my other and children have occasionally gotten free treats—a cookie here and there. But nothing like Max has received. So again: If the gestures are ones that people would extend to ANY child or teen, bring it! But if not, well, I'd love for people to consider their mindset about people with disability.

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Thanks for sharing!



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