The amazing Mary Evelyn Smith is a dear friend and fellow blogger over at What Do You Do, Dear?, where she writes-with plenty of candor, humor, and sass- about the joys and challenges of being a teacher, a wife, and a mom. We share a lot in common: our faith, many of our perspectives on life and people, and a devout appreciation for Arrested Development.
Her family is one of my favorites, and her son, the Sim-Monster, is a sparkly fireball of Awesome.
You can read the blog here, like her on Facebook here, and Tweet her here.
It’s an honor to have her grace my corner of the Blogoverse!
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In 2012 when my son was born with spina bifida, a birth defect of the spine, I joined the ranks of millions of people worldwide who love someone with a disability. I’ve learned a lot in the year since—how to find the best wheelchair accessible parks, how to schedule multiple therapists, how to be a mom. But more than that, I learned that I am “a special kind of person.” At least that’s what people told me.
Why? Because it takes a special kind of person to raise a child like my son.
I’ll be honest and say that at first, I really liked being a special kind of person. Who wouldn’t? It was nice. It meant I was doing something good, something important and noble. I am, after all, raising a child who has a disability.
But after a few months it didn’t sit so well anymore. Being called a “special kind of person” began to make me uncomfortable. And then I saw a photo on Facebook that made me realize why. It was a picture of a teenage girl dressed for prom and standing beside her date—a boy with Down Syndrome. The picture was charming, but it’s the comments that got to me:
“Honorable move, looks like she made his day!”
“Someone at my school did the same this year. It made me proud of her because she’s absolutely beautiful and could’ve had anyone she wanted.”
“That is very sweet of her…”
Turns out, she was a special kind of person just like me. But it felt hurtful somehow. I started wondering, “How would I feel if the boy in this photo was my son?” Sixteen years from now, when my son goes to prom, will people applaud his date? Will they see her as a martyr? As a saint?
Just what are we saying about people with disabilities when we glorify those who love and care for them?
Think of it this way: I am married, I have a mother and father who love me, I am surrounded by friends but what if, time and again, I overheard snippets of conversations—words that praised them for the love and care they’ve given me? Imagine whispers to my mother: “It takes a special kind of person to raise a kid like that.” Or to my husband “You are such an inspiration— I don’t know if I could be with someone like her.” These comments would say so much about my worth— my value.
Believe me, I am not diminishing my work as a mother. I am not ignoring the extra time and energy it takes to carry a wheelchair up a flight of stairs. I am not pretending that my son is just like everyone else. But when we glorify his friends, or his mother, or his one-day prom date, we imply that he is less-than. We imply that those with disabilities are not equally lovable—that it takes someone “special” to muster up this kind of affection. It seems we reveal our innermost bias—at least I think I did.
The thing is, all love should be praised and all sacrifice too. Loving someone is hard work—whether they’re a football player, a musician, or a wheelchair tennis star. So call me hard working or call me a wonderful mother. But if you call me a special kind of person I’ll probably nod and smile because I know a secret: if you knew my son, you’d love him too.
So, I guess, you’re a special kind of person—just like me.
In Case of Fire, Use Stairs 
Mary Evelyn, if I have ever said you were a special kind of person because of what you do for Simeon, I want you to know that I thought you were “special” before you had Simeon. But I will make it a point to use other adjectives to describe you from now on. Almost every time I read a blog post of yours, I’m teary-eyed, not from sadness but from the way your writing touches me. You know that I love sweet Simeon, so if that makes me “special”, I’m flattered. Thanks for being a guest on Beth’s blog today.
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Mary Evelyn, thanks so much for this post! God bless and keep you and your precious family (husband, son, parents, siblings…) close to Himself always!
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For the record, people tell my wife that she’s a “special kind of person” all the time. Make of that what you will.
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Well said!
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I don’t think this could have been better stated. As a wheelchair lady, I’ve always felt kind of embarrassed everytime I saw one of those Facebook condescensions. It’s hard not to. Growing up my best friend was comstantly told “it’s so nice of you to hang out with her and take her out” and she always replied the same way, “no, it’s actually pretty nice of her to want to hang out with ME!” The person never knew how to respond, but I always hoped it gave them pause and made them think a bit.
I also remember wanting to date but being afraid to mostly bc I knew my chosen fella’s intentions would be highly under the radar…by strangers. I had to have “that talk” where I told my boyfriend , “people are randomly gonna come up to you and tell you that you are being a good person by dating me…like its a good deed or its your community service project. Try to ignore it.”
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Kimmie I am so glad it’s not just me! It’s such an uncomfortable kind of compliment. By praising me people are diminishing the worth of my child. It’s tough because I know people mean well, but it reveals a lot about our true feelings towards people who look different. I know it takes a lot to be a mom of ANYONE really, and the truth is that a lot of moms (even with typical children) get the “special” compliment. The difference is that when your child has a disability, this compliment is applied to everyone in their life (friends, family, significant other) and that’s not right.
Your friend sounds like a funny gal. Great response!
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I love the “community service project” comment. Now that’s a new light shown on this. Hee Hee!
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This is so good. I love your perspective, and though I know it’s probably with good intentions, I think this is something people need to hear (read?).
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If one more person whips out the “you’re such an inspiration” platitude I may vomit 😉
What a beautifully written post, Mary! My better half rarely hears the “special person” schpiel – but I hear it on occasion. The truth is he is very special for accommodating my CP and I’m very special for doing the things he can’t or doesn’t want to do. He’s not my better half because he takes care of a cripple. He’s my better half because he’s an honorable, caring guy. If you asked him he’d probably tell you I’m his better half, too.
I tend to be fairly merciless when dealing with people who find me pitiful and deify hubby to martyr status. It’s 2013; it would be terrific if people weren’t so ignorant. I’m working to change that, and I commend you for working towards the same goal!
Alicia
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Well said Alicia!
Nice to hear from the other side of the coin. 🙂
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Hi Mary Evelyn! It’s your old WCS classmate, Carly 🙂 Thank you for writing this post. And for being so gracious in what you had to say. I run a business with a young woman who has Down Syndrome, and she and I deal with the “special kind of person” perspective on a regular basis. I have to agree with what Kimmie posted “she is special kind of person to want to hang out with ME!” She has to deal with all my quirks and weaknesses and flaws on a daily basis, and she handles my tendency to be impatient with such patience and kindness. Of the two of us, she is definitely the more patient and forgiving one.
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Carly! I’m so glad you found this post and thank you for sharing it on Facebook. I was excited to see a friend request from the good old days!
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Amen! I “signed up” to be a mom when my husband and I decided to have a child. Just because we have a child with special needs does not change that fact at all. I wanted to be a mother, and my husband a father.
I am doing what needs to be done as a mom. Yes what needs to be done is not summer camp, sleep overs and other things an 8 year old might do. Instead Its keeping up with Doctor and therapy appointments, giving meds and tracking seizures.
My love is no different.
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I am conflicted by this. I understand where you are coming from, but as another mom with a child with Spina Bifida, I can say with great confidence and clarity: Not everyone can do this. What we do is hard, physically, emotionally and every possible place in between. I don’t think for a second when someone says to me that they are amazed by what I do (calling me a special mom) that they are diminishing my son’s worth. The fact that you think that about yourself is okay, but I really hope you realize not every other mom in your position feels the same, and may be offended by that statement. Never once has that struck me as that being what they meant at all. I take it as other moms and dads recognizing the differences between how raising a child is for me versus how raising a child is for them….and it is a compliment to me when someone acknowledges that my life is vastly different than theirs and they don’t think they could do it, because again, the sad reality is, not many people could do it and that’s why the abortion rate for Spina Bifida diagnoses are so high. I will always gladly accept the title of “a very special person” because it is, indeed, special that I CAN handle what many others do not even attempt to. I think it’s incredibly different to say a girl is a very special girl for taking a handicapped child to her prom and saying a mom is a very special kind of mom for taking care of a child with disabilities. His worth is not his disability or anything that comes along with it, and unfortunately as you know, with Spina Bifida, what comes along with our beautiful perfect little children, are difficulties that are hard to imagine for other parents. They do not define him, therefore couldn’t possibly define his worth, but they are something that I do feel it takes a special kind of woman, a strong and unstoppable woman to do what we do everyday and raise our children into the amazing human beings they are. It’s just not comparable to parents of children without severe physical disabilities (to me, at least)…and I don’t mean to sound like I have a feeling of superiority, because I don’t…but again, the fact remains: not everyone can do this and way too many give up on their children without even trying.
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Hi! Thanks for chiming in. I’m actually not offended by being called a “special kind of person” either– and I think that’s because I know that the intentions there are good. And, as I mentioned above, I am not at all pretending that my job as a mother is just like that of a typical parent. It’s not. It is harder– even just talking about the physical demands alone.
Many mothers are told they are special people– mothers of twins (how do they do it??) mothers of a large family, but I think the primary issue is that for a child with a disability their mother is not the only one receiving this type of compliment. Their friends, spouse, boyfriend/girlfriend, teachers, and siblings receive the same praise. So when I wrote this, I was thinking about people who love someone with a disability, not just mothers (although that is my only experience!) and how this could affect their feeling of self-worth. If I overheard people speaking this way to my mother, my friends, and my spouse it would make me question myself as an equal contributor to society. I don’t want my son to wonder if he is equal.
I don’t know that I agree when you say “not everyone can do this.” You’re absolutely right to say that many people opt out. Many choose abortion or abandon their babies with disabilities. But I think that is a choice based of fear, ignorance, or the great unknown. They don’t choose abortion because they can’t parent these kids– they choose it because they don’t want to or are afraid to. And, to be completely honest, I understand the feeling. I wanted to run to the hill when I learned my son’s diagnosis.
I guess I don’t like the generalized “special kind of person” compliment because it says very little about my abilities as a mother or the mutually loving relationship I have with my son (because he puts up with a mommy who can be very cranky sometimes!). I know many parents of kids with special needs– some are amazing parents and some are far from it. I feel like having a child with a disability shouldn’t automatically qualify one as “honorable.” I would rather be complimented for my patience, my kindness, my positivity, or my ability to have fun with my child.
I’m glad you commented. Gave me a lot to think about.
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I love it! I know exactly what you mean. I have a 14 year old daughter with CP, in a wheelchair. I have people in my family tell me ” Your special” or “I don’t know how you do it”. First off no you don’t but I would you would do the same thing if it was your child! It is called life and you deal with what God gives you. I am just a mom like so many other women in this world.
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Hi Mary Evelyn,
Your son is beautiful! I was so glad to read your article. Thank you! I am the mother of 3 special needs 7 year old children, by choice. They are adopted. My husband and I are saints! What? No we just love kids and these three little ones are our gifts from GOD. It has nothing to do with being saints. We are guilty of falling in love with these children. It has made me feel as though having adopted less than typical kids makes them less worthwhile or worthy of parents.
Seeing those pictures of those special young women who were “kind enough” to choose a date of lesser value than themselves. All our children are equal in the eyes of those who truly matter, but I hope someday the world will see them as the valuable people that they are.
Blessings,
Shelley
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My 20 month old son has spina bifida and I just wanted to say this post is so spot on! Very often people will tell us that my son is so lucky to have me and my husband and even his twin sister and I always reply that we are the lucky ones 🙂
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I haven’t gotten the special person comment much, but I do have people say “I don’t know how you do it”. I tell them I don’t know how parents with three kids do it (I have just one, and he is delayed). I tell them that all parenting is hard. I may never have to have the worry that comes with a teenage driver who blows curfew. I may never have to worry about my son out drinking or getting someone pregnant. So, in some ways, my job is easier. In some ways it is not. We all worry… Just about different things.
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Michele, I feel the same way! I don’t know how people have twins! The thought makes me break out in hives. And the truth is, we all need to be patient with each other. None of us can know how someone else “does it” unless it happens to us. I used to wonder how mom’s “did it” in general before I had a child of my own. And if my son didn’t have spina bifida, I’m sure I would be out there telling people they were “special kinds of people” and asking how they do it!
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My husband has a spinal cord injury and I met him about 10 years after his injury happened. This is a fact that for some reason befuddles a lot of people. And another thing that REALLY confuses people is the fact that I am a nurse BUT my husband and I did NOT meet because I was HIS nurse. I feel the exact same way about the “special kind of person” comments. Like a previous commenter, I simply turn the statement around and say that I am lucky/blessed/fortunate that my husband married ME! I mean really, I can be a bear in the morning before I drink my coffee! LOL! Sometimes I wonder how able-bodied people would respond if someone said to one spouse, “Wow, you’re such an awesome person for being with him/her!” directly in front of the other spouse. It would be insulting. I’m always polite in my response and for the first time ever, I met someone who was not absolutely floored and speechless by it. When I said that I was actually the lucky one for my husband marrying me, the person I was talking to said, “Well, that’s the way it should be.” And I agree.
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I love this! Can we be best friends?
I’ve used a wheelchair all my life. And all my life, it’s been hurtful to endlessly hear about how saintly everyone around me is for dealing with me. I always say that if you want to be mother of the year, all you have to do is have a disabled child, and complete strangers will come out of the woodwork to tell you how incredible you are. Total strangers. They know absolutely nothing about my parents or our relationship, yet they feel qualified to praise them. “It takes a special person.” Well, if you’re defining “special” as a carrier of a certain genetic combination, then, yes, I suppose it takes a special person to create a disabled child. And if you don’t even know us, then that’s the only thing you know for sure that my parents did.
Of course, I like to be a little snarky, and tell people that my parents had it easy, up until they had their first child that could crawl and walk. Suddenly, they had to baby proof the whole house! Chase this child down all the time! He was always getting into stuff! They couldn’t just put him in a corner to play quietly, and expect him to still be there when they came back! Non-mobile kids are the way to go, man. 😉
And, yes, it’s ten times worse when it’s my friends or anyone else I spend time with, who’s told how wonderful they are for being my friend, or “taking me out.” As if I couldn’t possibly be offering anything to the relationship. I have some dysfunctional relationships in my life where I feel like I’m being pretty nice by continuing to be there for certain people, but nobody ever tells me that I’m saintly for doing it.
Last point, I don’t buy the “I couldn’t do what you do.” That isn’t just said to the people around me. It’s said to me too. And I don’t know what it’s supposed to mean. Of course you could, if you had to. Humans are adaptable. We do what we have to do. Now, if you’re saying you couldn’t do what I do, referring to my work as a middle school teacher, then you’re probably right! It is hard work, and it isn’t for everyone, but I choose to do it, because I love it. 🙂 But if you’re saying “what you do” as my simple existence in a wheelchair… really? You’re complimenting my ability to exist? My choice not to have killed myself somewhere along the line? Is that REALLY something you feel ok saying to a person?
Ok, one more point… I think compliments should be given for specific behaviors, not for general roles. “It’s really great how you let your son run around in the mud with his friends, even though it’s going to mean extra work cleaning his wheelchair before he can come inside.” “It’s awesome how you can talk about your disability and have a sense of humor about it, so other people are more comfortable with it too.” Nobody here is a “special person,” but you’re telling them that they’re doing something right, and we all like to know we’re doing something right. 🙂
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We can TOTALLY be best friend– because this response is fabulous and I couldn’t agree more.
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This is wonderful! I just found you from your comment on Life Rearranged and I’m so glad I read this. I’m still new to the special needs mom role; so far, I’ve gratefully accepted the “you’re a special mom…I don’t know how you do it” compliments because, frankly, it IS hard and (to be brutally honest) no one but my husband shows any real interest in truly helping us out. So, I do a lot all by my lonesome. The comment always felt like a small “atta-girl” that boosted my spirits and helped me get through another day.
But this…reading this has given me an entirely new perspective on things. That absolute LAST thing I want is for my kiddos to feel like they’re ‘less than’ in any way. So if that compliment to me is an insult to them (which clearly, it is) then I no longer will accept that compliment without a good comeback (like some of the ones your other commenters have left)!
After all, the days may be hard for me in a lot of ways, but my boys are the absolute biggest blessings of my life! My most important job as their mother is to let them know how loved and precious they are to me. Thanks for teaching me a way I might have undermined that goal before I did any harm to them. Hugs and God bless!
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