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.
***
Mary Evelyn Smith is a Children’s Librarian and writer living in Columbus, Ohio with her husband and bespectacled toddler. She writes about life, laughs, and (not so) perfect parenting at www.whatdoyoudodear.com. Follow her on Facebook and Twitter.
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My personal favorite is “I could NEVER do what you do!”. What the hell does that mean? You couldn’t love your kid? Hang out with someone with Down syndrome? What? These people feel like they are giving a compliment, but it feels like a kick in the shins.
There are tons of things I never thought I could do before becoming a parent and guess what? I’ve risen to every occasion, because that is what you do. You just do what is needed. If that makes me special, then all halfway decent parents are special.
You’re right– it shouldn’t be “special” to care for your child. Almost implies that NOT caring for your child would be the ordinary and expected response. My son was diagnosed during my pregnancy and I remember worrying that I wouldn’t be able to handle being his mother. I worried our life would be home bound and pitiful. I wish I had heard more positive stories about how normal families like ours really are. I think it would have given me more confidence.
The last time i got that one i said this….
Well, i tried to give him back but the hospital said no refunds or exchanges allowed.
when the girl look at me all horrified i said, stupid remarks get stupid replies. It isn’t like i have a choice now is it.
Another time i simply said, sure you would…. you have just never had to.
YES! This is so eloquently expressed! I have thought these exact things about video clips showing coaches allowing a teen with autism to play basketball or for the prom date pictures splattered all over social media. I couldn’t quite put my finger on what was off about all that, but you just nailed it here. It’s exactly the focus on the nice things OTHERS have done. Thank you for writing this Mary Evelyn!
I don’t have a child with special needs but I recently brought my mom’s older sister (78) to live with my family. She has no children of her own and has loved me and my 20 cousins like her own. Admittedly, it is an unexpected (but welcome) change in our lives and I’ve been so uncomfortable with the martyr references or the implications that what I’ve offered is heroic.
My circumstances permitted it but more importantly, she needs care and compassion. I feel privileged to be in a position to help her. I would be haunted by the thought of her living out her days in a nursing home especially because her short term memory loss makes her confused and feeling vulnerable. I’m mindful that circumstances may change that might make that necessary but unit then, I’m keeping her with me as long as possible and I think anyone in my position would.
Thank you for taking the time to articulate this issue.
Your comment brings up an important point. When we talk about someone being a “saint” or a “special kind of person” for loving another human being, we often are ignoring the fact that all relationships go both ways. You receive love and care from your mother’s sister just as you are now providing that for her. She is not an object of pity or charity– there is a mutual benefit to the relationship. Just like I benefit from my relationship with my son (and not just because caring for his medical needs helps me “grow”– I actually enjoy time with him and we have a lot of fun together!).
You knocked it out of the park…until that last line. Then you knocked it out of the city limits. This is a masterful piece that hopefully will make a lot of people think about the ableism that is so deeply ingrained in our society. Thank you for posting it.
“Deeply ingrained” is a great way to put it. We see this in the media portrayal of people with disabilities as needing to be “made whole” or as objects of charity. I believe this can and will change– but the process is slow as molasses.
Loved this post. We’re all “special” kinds of people and we just need to keep doing what God has planned for us to do. Thanks for explaining this so well. ~Robyn
Thank you very much for writing this. It’s a really necessary piece. May I include a link to this in a website I’m creating? It’s for parents/anyone who want to know more about autism and is a doorway to autistic voices/bloggers and neurodiversity friendly parents/professionals. The website is under construction but the facebook page (Autistikids) is up and running – full of links to the same type of posts. This post is great and speaks to any difference, and I’d like to put it in the advocacy section.
Thank you.
Hi Patricia. I don’t mind you including a link to the post on your site if you think it would be helpful. Sounds like you have a nice resource space for parents and professionals.
Dear Mary Evelyn,
Thank you. From the bottom of my heart.
Signed,
an autistic person
excellent. so thankful for your words. ❤
Thank you for sharing. I saw those stories circulating around facebook too about those wonderful people who appeared to have pitied someone and made the ultimate sacrifice. It was just before my son’s graduation. My heart felt sick for the challenged child. I was so proud of my son and his accomplishments. I was very proud of his grad partner too. I hate how society has the opinion that people with disabilities need to be pitied. I love my son, I love all my children. That’s just how it should be.
This is a very good website for anyone to read. I am a mother of a son who was born with brain injury due to birth complications. He cannot speak and has limitations processing what others saying and cannot write or has never used formal sign language. However he did over time make up his own signs that number over 300 that only the family recognizes. We did have him learn standard sign language as a child and he does use basic ones but still prefers his own sign language. He is the delight of our lives and so loving and fun to know. Since he was the middle child, he of course always surrounded by their friends and received the usual attention that a child born in the middle receives. Sometimes good attention and sometimes bad. He would imitate his sister putting on makeup and make her mad, and follow around after his younger brother or get in trouble just like the others. People have often said things to me about how my husband and I were sort of in the category of saint hood because of John. We have said that all parents are up for sainthood. Our children bring joy to our lives in their own unique ways. And those same children can also bring heartache and disappointment . Parents are always challenged to grow and love more and more just because we are parents. Parenting is a vocation and a calling and in our case because we are Christians, it calls us to a commitment to our circumstances knowing that God will always be there to give us the strength and faith to continue to see each of our children as unique and perfect creations of a loving God.
Thank you. Thank you.
My middle daughter’s best friend in k-3rd grade was a girl with spina bifida. She used a wheelchair and/or walker at all times. Teachers and other parents would make comments about her kindness, or my parenting skills to have taught her such compassion. I would be surprised at them, most often somewhat offended, because when I looked at my daughter and her friend, I saw only a couple of girls having a wonderful time! It bothered me the way people would talk, at first I just brushed it off, but I finally began to take the time to explain to the people who brought it up. My daughter loved her best friend, she did not see her as any different from herself any more than any other little girl…in fact, they had a lot in common. As for the chair, it was simply a tool to be used. My daughter wore glasses…they were a tool, my daughter did not see the difference between her tool and her friend’s tool (except that maybe her friend’s tool was a little more fun). And how did I teach this to my daughter? I didn’t, I just lived my life the best I could. You see, I have a physical disability that sometimes requires me to use a wheelchair, sometimes a cane…these items don’t make me any less a good person, or a good parent. I never used it as an excuse in our home…never asked for pity…my children grew up seeing me in, and out, and back in, a chair…I used it as a tool to be able to still do things with them instead of pouting at home…as a result, they learned that mobility devices are nothing more than tools that help strong people to live life to the fullest. Your tools do not define you, what you do with them does.
I love your article. Thank you for taking the time to write and post it.
I love this.As mom to an 8 yr old son who is down syndrome I have heard all sorts of praises,suggestions and even demands from,for the most part well meaning individuals. My most vivid and hurtful memory though was actually soon after we found out that our baby had down syndrome,around 16 weeks gestation. We were sent to a genetic specialist for scans to check our babies brain and heart….after those scans were done, the doctor looked at us and said…and I quoate word for word “I am so sorry,your baby does indeed have down syndrome. We can give you an abortion today, I am sure you would be a great parent but having a retarted child will be difficult”. I was so angry that we were basically told to end our child’s life for no other reason than because he was going to learn a little differently from other children. Our son is the most wonderful,loving child and we wouldn’t change him even if we could because I think we are so blessed to be his parents and we are so happy that the Lord trusts us to care for him,but most importantly…the lord gave him to us so that we could learn to unconditionally love another human being……boy the lessons we learned and will continue to learn.
Thank you for writing this. I am the wife (of 20 years) of a quadriplegic. We are in the middle of raising our family. People often say to me how “special” I must be, in fact, they often use the word “extraordinary” .. and it has *always* made me feel uncomfortable. I’m Just doing the best I can with what I have – which is really all anyone can do in *any* situation.
I have taken to saying, “I’m not extraordinary, I’m a ordinary person in an extraordinary situation”