My Son’s Disability Defines Him (and why I’m okay with that)

I’m sensitive to words. I think they’re interesting. I think they’re fun. I love that words have meanings behind their meanings.  I love that definitions are so inadequate. When you’re the mother of a child with special needs, you hear a lot of different words that mean the same thing.  Disabled, handicapped, differently-abled, special needs, wheelchair user– and amid these swirling words, each carrying connotations like verbal baggage, I see patterns.

Just the other day, I noticed a trend. While scrolling through my Facebook news feed, I read an update that went something like this:  “My friend’s son (who happens to have spina bifida) just got his first wheelchair!” 

“…happens to have…”  I’ve seen this kind of language before. I’ve even used it myself. 

A girl, who happens to have CP.  
A child, who happens to have Down syndrome.

Happens to have– a purposeful afterthought. We use these words to create distance between our children’s inner selves and their outward physical state.  We want to separate the people we love from situations that are less than perfect. We don’t want their bodies to define them.

But the truth is, my son doesn’t “happen to have” a disability.

He just plain has one.

His experience with disability will be (and is even now) woven into his life.  It is embedded just like being a child of divorce is embedded in me. Or being the father of a child with special needs is part of my husband’s identity.  My son’s disability is defining. It is not a side note. It is not a post script. In the story of his life, his disability will not be scrawled hastily in the margins nor will it be offhandedly mentioned in the afterward. It will be front and center, along with his strengths, his flaws, and his accomplishments.

Do I think that my child is nothing more than his bodily limitations?  Certainly not.  Do I believe that his diagnosis is an adequate definition of who he is? Not at all. But having spina bifida is a significant piece of his life story and there is nothing about who he is or where he comes from that I want to gloss over.  I want him to see himself in full.

If we believe our children should have pride in themselves, that they should respond to every aspect of their lives with grace, then we cannot separate them from their circumstances.

I don’t want him to say “take that!” to his diagnosis– I want him to thrive in it.  I don’t want him to downplay– I want him to celebrate. I want him to say disability and hear dignity.  

I want to look my child in the eye, loving every inch of potential and pain, saying, “You are my son. You are defined by your experiences and your reactions to them. You are defined by your mind and your body. You are defined by your kindness and your faith and your integrity. You are defined by your disability. And every piece of you is beauty.”

Comments

  1. Anonymous says

    My favorite line of this post is “Every piece of you is beauty.” So true!!! Great article that applies to all of our children (no matter how old). Thanks for sharing your gift with all of us. I want a giant poster size print of the last picture in this post. Would it seem weird to hang a huge picture of my good friend’s beautiful son in my home???

    Bertie DeWane

  2. says

    Very well put. Like you, I have used those words before, “happens to have,” when describing Kyle. It’s funny…I did a guest post recently and included that little phrase in the short description of myself. And just the other day, I submitted another guest post but this time I left that little phrase out. I copied every other word except for those three words because for some reason, it didn’t quite sit well with me. And then I read your post today! Wow!

    • says

      That’s so interesting to me! Something about it felt odd when I said it too. Sometimes I think that kind of talk sounds preachy somehow– like I’m being pushy about how my son should be viewed. I don’t call myself “a mother who happens to have a child with SB” or a “woman who’s parents happen to be divorced.” I just speak plainly and I want to do the same for Simeon.

  3. says

    I sometimes use the “happens to have/happens to be” construction, but not always. I think the most recent time I used it was about the blind young man on Sesame Street, but I meant it in such a way tat he wasn’t just inspiring “for a blind guy” or a “good singer for a blind guy,” but that he was straight up inpspiring and a good singer. I don’t think I say that Claire happens to have spina bifida. In fact, I think it’s the matter of fact way I say it that inspires so many strangers to say “I’m sorry,” as if I’ve just given them bad news when they say, ask if she’s walking and I say she’s working on it because she has spina bifida. Bottom line: I think distancing language can be useful, but only sometimes and in specific situations.

    • says

      I’m pretty certain I’ve used the “happens to” have construction too, especially early on when Sim was first diagnosed. It didn’t sit well so I stopped. I definitely use it in other situations though– but sometimes I use it, especially when I’m annoyed (“Greg, I WOULD make dinner but I HAPPEN to have a screaming child to deal with right now.”). You’re right, that it’s appropriate at times. Honestly, the actual language of “happens to have” doesn’t bother me as much as the “take that SB!” I don’t like when distancing language feels heavy-handed and pushy. That’s my main issue.

  4. says

    Thinking a little more, I still don’t think I would say Claire is defined by her disability, because it may or may not turn out to be the single most defining thing in her life. It would be like saying I’m defined my my near-death experience, or by my marriage. I’m shaped by those things. Irreversibly changed. But not defined. I think no one thing defines a person. But “shaped by” I can get down with.

    • says

      I actually agree with you on that. “Shapes” is probably a better term for what we’re talking about but in many ways they are the same. You can’t really “define” a person with one word or one experience or one trait. I guess my point is that I see a lot of us in the special need community working hard to seperate who our who are children are on the inside from who they are on the outside and I don’t think that’s necessary. I think the two are connected and we can take pride in that. I am using the word “define” in the say way that one might talk about a “defining moment.” Our bodies and our experiences are defining.

  5. says

    Really great piece, M.E. I really like it. I also love that last photo of Simeon. I feel like if ever comes a day when I got to meet Simeon I would be overwhelmed with the need to tickle him. Which could be awkward because by the time I could afford to fly to America he will probably be in his 30s….

  6. says

    Thanks for this thoughtful piece. I admire the way that you write about your life and Simeon and I feel like I know you somehow. Your thoughts often line up with mine on different subjects. I haven’t used the phrase ‘happens to have’ with my son, but I can see how using it to distance yourself somehow makes it seem like you don’t accept that part of him. I also want my son to see that I love every part of him and that includes his SB.

  7. says

    Yes, the same kind of thing happens for parents of children with Down syndrome! I used to do it as well, and stopped because it never sat well. I also see the “Take that (disability)!” construct as well, and that never seemed right for me, because it sounded like I was talking about my kid’s disability as some kind of evil spirit or something that needed to be exorcised out of him. What I’ve come to decide is that it is for my son to decide exactly how he’ll define himself, but my job as a parent is to embrace it all. :)

    • says

      The “take that _____!!” stuff is so odd. And I agree– it makes my son’s disability out to be some kind of monster. I don’t want him to be in a fight with his body. I want him to live as well as he can with the body he has.

  8. says

    I agree and disagree. I have never used the “happens to have” wording to describe the disabilities my daughter Namine was born with, because it IS an afterthought. She doesn’t happen to have femoral-facial syndrome, she just HAS it. End of story.

    Except that’s not end of story – her story is NOT defined yet. She is NOT defined by her disabilities – limited by, yes, to a degree, but how she lives is up to her. She defines herself, not some congenital condition.

    The “take that, disability!” mentality might work for some conditions, but not others. In my opinion, it can’t work for a heart defect, but it can for conditions for which there is therapy. Namine fights in therapy – I say “fights” because that’s what physical therapy is, most days: a fight, a conflict between her mind, her willpower, and her body, her uncooperating muscles. It’s training. It’s building her body to be more than she is now. It’s DEFINING her. It’s HER, defining – refining – herself. She is not done being defined; she is always working, always improving, always getting stronger.

    She’s NOT defined by her disabilities. Not by a longshot.

    • says

      Hi Paul. I’m glad you commented here and I think we may have more in common on this than you think. My son’s story is not defined yet either. I believe, like you, that his story is evolving. You could say that he is defined now BUT he is also in the process of being defined, and he will continue defining himself in the future. Some parts of our definition we cannot control (our bodies, our hair color, our life experiences) but the most importat part of our definiton or our identity IS up to us– our actions, our reactions, and how we allow our spirits to grow and be affected by the things we cannot change. I don’t think the process of being defined is ever finished. I don’t think it’s done for my son or your daughter either. I’m certainly not done with myself.

      I know that “defines” is a strong word but I’m using it here to mean identity– what we stand for, what we experience, what makes us unique, and who we are inside and out. Thank you for sharing your thoughts on this.

  9. says

    I came to your blog a while ago by way of Kimmie’s, and I always love it…

    THANK YOU for writing this!! I don’t know how the “happens to have” thing came into use lately, but it’s nails on a chalkboard to me. If anyone ever describes my disability that way, there’s a very good chance I’ll instinctively kick them in the face, and think it through later. :)

    It bothers me on so many levels! Like you said, it treats the disability–something which has shaped every moment of my life; I’d be a totally different person today without it–as an evil monster. And is the intention to make the person feel more “like everybody else?” Because if that’s the case, it fails miserably. It’s awkward. It’s hard to say. It “otherizes.” I don’t add an awkward “happens to” to my curly hair, or my brown eyes, or my witty sense of humor, or my job title, or any of my other attributes; why does disability need it? I don’t describe other minorities that way. I wouldn’t say that he happens to be black, and she happens to be Asian, and they happen to be gay; why does disability need it? By going linguistically out of your way to say “Disability is no big deal! It’s just a tiny thing that happens!”, you’re actually making into a much bigger deal. It’s such a big deal, that you can’t even discuss it with the same ease and natural syntax as anything else in our lives.

    I’m sure somebody has a counter-example, but I’ve never heard a person with a disability describe themselves with “happens to.” It’s one of those things put on us by outsiders trying too hard. Isn’t that telling?

    • says

      Thank you for responding here Kristine. I thought about the race and hair color example too! I think part of the issue is that it’s socially acceptable to have brown hair or to be of another race, but when we are so specific about how we discuss disability, it almost implies that we need haven’t completely accepted it as an “okay” way to live. Just like when we’re out and a little kid says “That boy is in a wheelchair” and their mother shushes them. I understand the embarrassment, but it would be okay for a kid to say “that little boy has brown hair” and using a wheelchair should be acceptable too. And personally I have never heard a person with a disability say they “happen to have” one. They usually just come out and say it or don’t discuss it at all. It may be part of their definition but it certainly doesn’t have to be the most important part!

  10. says

    Can I jump in on the “Take that ____” debate? I often hashtag pictures of Liv #ttsb (take that spina bifida) when she is doing something that we were originally told she may not do.

    Crawled at 13 months? Take that, SB!
    Pulled to stand at 19 months? Again–Take that, SB!
    Cruising along furniture and climbing down off the couch at 24 months? You guessed it–TAKE THAT, SB!

    I don’t feel in any way that her disability is an evil monster; however, it DOES limit her mobility greatly. When your child is first diagnosed with something like SB, and you hear that paralysis is likely and that your child may not ever walk unassisted, we NOW take great joy in cheering her on and getting excited over the things we were told she may never do. So, no, SB isn’t necessarily separate from who she is but it does not have to box her in and confine her to the limitations that come along with it. That’s just my humble little perspective on the whole “Take That ____” sentiment people use. I do it with myself and anxiety all the time, kind of like an “Oh, yeah Anxiety? I won’t let you get the best of me!” attitude.

    Also, as far as the “happens to” wording, the only thing I can think of is that parents/people say this when they want to take the focus off the disability, even though I totally get that by doing this it actually has the opposite effect. These are very interesting, thought-provoking conversations that I continually learn from, which is what makes them so great!

    • says

      I’m glad you shared the other side of this. I think what you’re saying is how a lot of the folks who use “Take that!” feel. Honestly, I put it in this post because I feel strongly about it but I was also hesitant to do so because even though I’m not a fan of the phrase, I AM a fan of many of the mothers who use that phrase and I didn’t want to offend.

      I think part of my concern is the message this kind of language could send to our kids. I wonder if it’s confusing to say “You were born this way, you have SB, and even though it’s not always easy it’s an okay way to be and having SB doesn’t make you any less of a person.” and at the same time talking about SB like a foe with “take that!” I feel more comfortable praising Simeon’s accomplishments with him at the center. I think that “Way to go Sim!” focuses on him and his hard work more than “take that, SB!” does. “Take that!” (linguistically, at least) puts the child in opposition to his diagnosis. It separates the two and personifies SB as something very negative to overcome.

      If I’m completely truthful, I should also mention that it’s sometimes hard for me because Simeon’s doctors were exactly right about him– he IS paralyzed (all SB kids are to some extent but his paralysis is significant), he does have a shunt, it’s unlikely that he will ever walk, etc. So sometimes I think “take that” implies that some kids are overcoming this thing called SB and what does that mean about my kid who is pretty typical for his diagnosis? I’ve had people tell me “I know someone with SB but they walk because they’re very determined” and I wonder if “take that” perpetuates the idea that with enough strength and determination our kids can get up and walk. The truth is, when Sim crawls or sits on his own it isn’t because he is beating SB or flying in the face of it– he’s just a little boy who wants to sit and crawl and has found a way to do so (with the help of therapy).

      I also find it telling that adults with SB don’t seem to use this phrase.

      I’m kind of all over the place here– I guess my point is, I don’t particularly like it but I understand why people use it. I enjoy a good ol’ thought provoking discussion too and I’m glad we can have one here! :)

    • says

      Same here. I am surprised to learn that people here are so much more supportive of this type of thinking than I am used to hearing on autism blogs even though they’re actually talking about a much worse disability( at least it seems so to me) without a definite upside which autism clearly has. Never understood why people are so much more determined to make us less okay than the other disabilities.

  11. says

    Interesting point about “Take that”. I have both an illness and what general public would call a “physical disability”

    I do use “Take That” towards my illness quite frequently, but never towards my disability. With the disability I simply got along and used whatever piece of equipment was necessary (eg walking stick, then various wheelchairs as things deteriorated, grab rails, splints etc). It was just a matter of adapting. I never felt the need to try to “hold out” and fight it, just find ways round it to continue to live and do the things I need to do.

    The illness is completely different though. It feels more like a battle.
    For instance in a “big” example, my docs had told me that my illness meant I wouldn’t be able to complete my university degree and I should “go back home”. I refused and struggled through, even though it meant I had a lot of time off, as well as time in hospital and it was pretty hard going.
    So the day I graduated I did think “take that” to my illness. It had thrown up so many obstacles but I had managed, with a lot of support and a lot of obstinacy, to work around them. It had been a 3 year battle, one I had won.

    Fast forward to today. The illness continued to progress and I eventually had to give up work. I still make what some might consider “small” plans, like seeing friends or, on a very good day, going out for lunch. But more often than not I will wake up that day and be too ill to go. But I always have a plan B. If I can’t go to my friends, they come to me. If I can’t go out for lunch, we have a take away. The point is I always enjoy the day anyway. And again, I think “take that” to my illness. It tried to spoil my day. It failed.
    Today, “Take That” isn’t necessarily “overcoming” my illness and doing things in spite of it (impossible!), it is making sure I don’t let it spoil my life, even when it stops me doing the things I had planned and wanted to do.

  12. says

    This was perfect. My son is autistic. I’ve had people attempt to correct me saying that, which is absurd to me. It is an inseparable part of him, and I want him to be proud of himself.

  13. says

    People are defined by more than one thing. There is no way to deny that having a disability is one of the things that defines a person. Your son’s identity will form around many aspects of his physiology, psychology, beliefs, experiences… I applaud you for making sure he knows that he doesn’t have to “overcome” something that is an inherent part of him in order to thrive.

  14. says

    Hi… On the issue of identity language, I came into this culture being taught that identity first language was important. My Doctor and I thought I was autistic, so those are my influences. However, my doc was under informed, and my memory was messed up, so I have to remember the identity first term I came up with to signify my brain. My brain is my most important body part, regardless of how it’s changed over the years. It is an inseparable part of my identity, and for all my self loathing when it displays some of those differences, I like my brain.

  15. says

    A thoroughly enjoyable read though I remember latterly in High School – I have a walking/fatigue disability as yet diagnosed at 26 – being chuffed at a pal saying ‘I don’t think of you as disabled’ when I brought it up because there was a potential issue I’d seen. I don’t want it to define me and just be seen as Robert but I’m not ashamed by it. ‘Normal’ can’t be achieved whether through ability or a lack of confidence so I accept that.

  16. says

    Great post! I have some other takes on this, along the lines of what some others here say. I do not think my son’s disability defines him, per se. It’s one aspect of who he is, like his amazingly cheerfully personality and his determination. And his good hair! Also, I have used the term “Take that!” in my writing when I have referred to the doom-saying doctors in the NICU–as in, see?! You didn’t know what the hell you were talking about, look at my son thriving and achieving.” But I couldn’t agree more on wanting my son to own his disability, to take pride in everything about him–and to get others to, as well.

    • says

      Thanks Ellen. I’m glad you stopped by my little space since I’m such a fan of yours. I think a lot of this is semantics. Like you, I believe disability is just one part of the amazing person my son is– I just used the word “defines” to express that here. “Take that” is a tough one and I must say it’s a phrase I’m not terribly fond of. But it sounds like you use it not to refer to your child’s disability as much as to the doctor’s negativity. Almost like you’re speaking to the docs and not to CP or autism. Saying “take that” to a doc makes sense to me!

      Based on what I read at your site, you are absolutely raising your boy to accept himself in every aspect of his life– disability included. And that makes me want to say “woot!!”

  17. Linda Thompson says

    Your son is not only a beautiful little boy, but a very lucky one to have you as a mom. I know because I also was a very fortunate child to have the mother I had. I am a 65 year old woman who was born with cerebral palsy. I have had ad a full and rewarding life because of the way my mom raised me. I hope to publish a book about her sometime this year. Your son will benefit from your wisdom and values.

  18. says

    Love this. I’ve never signed up to the ‘happens to have’ either. I don’t like my son to categorised either – as in ‘He’s a Down’s”. I have always said : ‘My son lives well with Down’s Syndrome’ and that sums it up for us. He has Down’s Syndrome in every cell – but it doesn’t mean he has something missing – far from it – he has an EXTRA chromosome and it is very apparent that he is a unique person living with this extra element that has impacted on his intellect. The issue many parents have with the way in which children with Down’s Syndrome get shunned is that – just due to this extra chromosome, youngsters with the condition in the past were refused access to education, healthcare, independent choices, relationships, proper food, medication and their own families; incarcerated in institutions, abused and robbed of all sense of self. Society treated (and still does in many countries til now) people with DS as ‘sub-human’ and worthy of neglect, ridicule and abuse. That’s why many parents wanted to turn things around and sought to diminish the disability and ‘big up’ their children – feeling that their child’s life needed to be justified. We need to always be mindful of the terrible history – from the gas chambers to forced abortion to routine infanticide that has befallen the children before ours. I’d like to think society would say ‘disability’ and think ‘dignity’ but I don’t believe we are there yet. Young children with disabilities are very cute – it’s when they hit adolescence and want to take their part in society that the problems start (in my experience). All the very best to you and your son! :-)

  19. Julia says

    This was fabulous. All of my (special/inclusive) education / disability studies peeps are sharing it on social media and I know that more than a few of us will be using this in our courses. I loved “I want him to say disability and hear dignity.” That really speaks to the essence of what I do. This quote might in fact appear on my syllabus (with credit of course) this summer. Thank you!

  20. says

    fantastic post. really, really well put.
    I’ve thought this a million times with both Moxie (my daughter who has Ds) and myself (who am deaf) – and I know I’ve written about it, but not nearly as wonderfully as you have here.
    thanks for this!

  21. says

    Mary, I love your post. I support people with severe to profound intellectual disability in my work and personal life. For a while now I have struggled with the reluctance to use labels particularly for this often forgotten and rarely heard group of people. Yes we are more than our disability, however, in order to achieve inclusion, our disabilities need to be truthfully named and not hidden. I tried to express my thoughts around this in a presentation I gave at a conference a few years back around solutions to inclusion. I thought it might add to the conversation. Here’s a link to the video http://vimeo.com/23019913 as well as a link to the slides https://www.academia.edu/1708463/Keynote_address_Inclusion_a_universal_human_right.

  22. says

    Totally agree! I stopped using the term, “happens to have” and replaced it with the much simpler, “has” a while ago. I think it is fear of one day having to use a wheelchair ourselves or having a disability ourselves that makes us want to distance ourselves from talking about disabilities the way we do about abilities. We don’t say, “Fiona, who happens to be particularly bright.”

  23. says

    I loved this. I had a son with cerebral palsy. I say “had” because he passed away 3 years ago at the age of 19. He will always be my son but he is not physically with me although he will live in my heart forever. I have used “happens to have” and just “has” interchangeably because I never really thought about the difference. My biggest challenge was painting a picture of my son to people who did not know someone with a disability and hoping they would see him for who he was and not pity him for what he had. It would depend on the setting I was in as to how I would describe my son. Those who live in the world of disability, either as having a disability themselves or as a family member, saying your child has cerebral palsy has a whole different meaning than it does to those who do not live in that world. For those not… I see the sadness, the pity, the “oh, you poor thing, what a burden you must have” look… and I hate that. So, I describe my son differently to different people in hopes they will see and know the same wonderful, amazing child as I do.

  24. Holly says

    I’m not a fan of “happens to have” whatever disability too. One of my sons, Noah has moderate CP. My other child Jonathan is a typical boy. I prefer to say Noah has or was diagnosed with moderate CP to strangers. CP does define Noah to some extent but not completely. In other words, it’s one part of who he is. Like you, I also dont think Noah is nothing more than his limitations or disabilities. Not by a long shot. But CP like SB doesnt ever disappear. I dont want people to feel bad/sorry for Noah. I think that when people say it, they are convinced that Noah will get rid of CP just like Simeon will rise above SB. I’ve also found that it is said by people who aren’t a part of the CP/SB communities. But the truth is that Noah will not defeat CP just like Simeon won’t conquer SB. It is a controversial topic. I dont think adults with CP use the words “happen to have” either. I’m sorry I’ve practically written a essay now.

    (By the way, Simeon is so handsome).

    • says

      Thank you Holly! And I couldn’t agree more. SB and CP won’t go away– I think embracing who our kids are is more important than encouraging them to rise above this big part of their lives.

  25. Anonymous says

    Oh, how I love this! My daughter is hearing impaired which is almost completely correctable with aids and I am honestly so tired of the PC jargon. I was complemented at her last IEP meeting (boy those suck!) for how well my daughter understands disability and articulates her needs in relation to it. They are amazed that at age 6, she can explain in detail her disability, why it happened, and how it affects her with no embarrassment or self-consciousness. Well, yeah. My child is brown haired, smart, and hearing impaired. We never PC’d around it so she doesn’t. It is a part of her. In her case, I think her disability IS more of a “happens to have” than a defining condition because it is totally correctable and she can function most days without having to do anything about it, but I’m not the one to judge that. Perhaps as she ages, it will be one of her defining qualities. My height is to me, as I have always been self-conscious of it. My cousin, who grew to an inch taller than me, doesn’t really care that she is tall. Consciously or sub-consciously, I think we decide which of our qualities will be our definitive ones. But my child is disabled, not differently abled. Her ears do not work the way they should. If I could, I would fix them in a heartbeat. I think she would too. But, at least right now with current technology, her hearing impairment isn’t going anywhere. I want her to thrive with it and in it, not despite it. And she will. She already does.
    I must say what very one else is saying, Simeon is gorgeous!

  26. says

    Beautifully written and I’m so glad it was so well received. Sometimes I wonder whether our hesitancy in allowing our children to be defined by a disability highlights that deep down we see the disability as bad. I don’t say “my son who has brown hair” I say “my brown haired boy”. The only reason to insist on disabled being an add on is if we feel we need distance. I suspect it is in part a process of acceptance. If we didn’t put perfection on a pedestal then the fact that we are all broken wouldn’t be a surprise or an issue.

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