Thursday, October 26, 2017

You Are Saying It Wrong

I'm most likely going to get into deep trouble for this post. In fact, I might not even publish it.

But I am struggling with this and just can't let it go until I attempt to phrase out why.

Here's the deal: sometimes I think that in an attempt to advocate for our kids with disability, we end up isolating our kiddos (and us) even more. Because ultimately there's a difference between showing life with disability and genuinely letting people into our world in order to understand it better...and standing on a soapbox and preaching exactly what people can and cannot say in regards to us and our children.

I've seen this happen (and have done it myself so many times) in regards to people first language. People first language is placing the reference to the child before the reference to the disability. Child with Down syndrome vs Down syndrome child.

I don't disagree with people first language. Quite the contrary, I think it's important on multiple levels. But when we make the exact phrasing more important than letting people love our kids the best they know how (everyone has to start somewhere), that is where I have a problem.

Stranger in the grocery store, genuinely wanting to interact: "Oh your little Down syndrome baby is so cute!"
Parent: "How offensive! That's BABY with Down syndrome, you monster! How COULD YOU BE SO INSENSITIVE AS TO DEVALUE MY CHILD'S LIFE."
Stranger: "Um....I was just trying to be nice. Over it. Bye."

A teachable, life-sharing moment that turns into a soapbox lecture does more harm than good. There is a way to model advocacy without making everyone feel like they need to walk on invisible eggshells around us.

And to be perfectly honest, this isn't directed at anyone but myself. A past version of myself. This is a convo that I would have had (maybe not out loud, but definitely would have thought) back when Addison was first born.

This ties into the thing puzzling me now. The latest trend in Down syndrome advocacy is along the lines of: "It is rude to use the phrase 'special needs' and the world needs to STOP!"

Hmmmm.

I have seen this argument on multiple levels by multiple blogs/videos/you name it. And while every source I have seen lists some great points, solid arguments, and 99% of thoughts that I completely agree with...I am left asking...why?

Why are we setting up more roadblocks to limit people feeling comfortable enough to talk to us and our kids in an attempt to learn about and relate to special needs families?

The latest article I saw preaching this new anti-special needs perspective made me think of something that happened to me last week.

I have a friend who recently had a baby with a surprise diagnosis...NOT Down syndrome. I have genuinely loved following her posts and articles and learning more about her baby's diagnosis...a diagnosis that I have zero previous knowledge about. I love that my perspective is being shifted and changed by this friend caring enough to share her experience.

When I randomly ran into her last week for the first time since she had her baby (and diagnosis), I was thrilled! I wanted to show her love! I wanted her to know that I get it! I wanted her to know how beautiful and amazing I think her baby is and what a fantastic job she is doing.

As I stared into the tired eyes of a new mother and at her gorgeous baby, I opened my mouth to say all of these things, but then I remembered.

Part of her baby's diagnosis includes very unique features, and she had posted a very vulnerable post about how hard and insensitive it is when strangers won't stop commenting and oohing and ahhing over her baby's beautifully unique features.

Of course I didn't want to offend! But then I froze. What could I say then? What should I say? I didn't want her to feel hurt but how could I still acknowledge her baby without hurting her? I genuinely had no idea, and our short exchange ended with me not saying one single word about her baby.

As I walked away, I was horrified with myself for not saying anything. I thought about when Addison was a baby how offended I would have been if people hadn't acknowledge her at all. This brought to mind all of the dozens of verbal roadblocks that I put into place that people had to bravely traverse around in their attempt to show me love.

I don't deny new moms these valid hurts and these tumultuous emotions as they figure out what all of this looks like. I don't begrudge my friend her post and her offense and her rules because I've been there. I've done that. I get this part of it too. I think it's honestly part of the process.

But I didn't realize until walking away from her last week how tricky it can be from the other side.

When I see the special needs community rising up to protest the semantics of their title....a title that really means nothing in and of itself....just words that distinguish our families...I wonder why we would want to set up more reasons to make people feel like they can't try with us?

Why are we trying to shut people out by making them feel like they are talking to us all wrong?

Why are we attaching extra meaning to the words "special needs" to make this phrase offensive? The word "special" is not a bad word. Why are we making it into one just for argument's sake?

Addison honestly does have needs that are different than my other kids' needs. In a bad way? No, just different. So what do I call this? Different needs? Extra needs? Special needs? I'm not seeing the difference here enough to warrant a war on the world for choice of words.

I proudly wear the title Special Needs Mom. To me these words hold a lot of beauty, a lot of hope. They spell victory to me. "Special needs mom" is my crown, my journey, my love. I adore being a special needs mom and the truth is, I have a different journey than friends who don't have a child with Down syndrome. I get to see different scenery and learn different life lessons. Oh sure, the hardness of this journey varies according to what stage of life we are in and when the hardness lessens at times, it can be tempting to resent being labeled as "different" because it feels so "same". Addison is a child who needs nurture, care, and love...just like my other three children.

But when you find yourself sitting in a waiting room while your child's heart is operated on...I'm sorry but not every mom goes through that. It is a bit of a special twist to the motherhood journey. And with this special twist come with it (wait for it) special needs.

And if "special needs"is now OUT, where does it stop? Will someone wake up one day and decide how offensive the word "Down" is in "Down syndrome"? (Never mind it is named after a person, not the direction down, but I digress.) This person sets off on a mission to prove to the world why calling it "Down syndrome" is negative and offensive and horribly incorrect when we should be calling it "Up Syndrome". And while the world scrambles to switch this, someone else wakes up one day and says, "I feel that calling it a 'syndrome" sends the wrong message. It's not a disease! It's not something to be cured! 'Syndrome' is offensive. And to further send a message of positivity and hope, let's just use the word 'up' twice. So instead of saying she has Down syndrome, kindly use the correct terminology of 'she has Up Up' or else SHAME ON YOU.

The world is all like ???????? We just wanted to love your kids. Not sure what we can call them now....so we will retreat and call them...nothing.

And DISability? How negative and horrible is that!!! It's now PROability. Get these words exactly right or you are a horrible human being!!!!

Okay I admit how ridiculous this is, but I'm trying to make a point. It creates confusion barriers oftentimes resulting in silence.

For what? All of this confusion in titles....doesn't change anything.

My daughter has an extra chromosome (you can't be offended by that word because SCIENCE). She is beautiful and thoughtful. Inquisitive and sometimes stubborn. Smart and funny. Cute with dance moves I can only dream about. She is the light of my world. Delightful sound track to my life movie. And sometimes she has special...extra...whatever you want to call it...needs.

I'm okay with that. I'm more than okay. I delight in every part of her personhood. Every last chromosome.

Special needs weave themselves throughout my days, and I don't resent them. In fact, I welcome them as it helps me love Addison in the specific way that she needs to be loved.

Varying the specific title does not change what an amazing person she is, and when people refer to her as having "special needs", they aren't trying to be disrespectful of her as a person. They are just trying to talk about her in the only terms they know. Because how else can you pinpoint the beautiful uniqueness that is present in her life without using a specific word to do so?

My goal as a special needs parent is to extend grace to people who are simply trying to understand...trying to be there...trying to be kind even when their words falter around an unfamiliar topic. How about this:

Stranger in the grocery store, genuinely wanting to interact: "Oh your little Down syndrome girl is so cute!"
Parent: "How offensive! That's BABY with Down syndrome, you monster! How COULD YOU BE SO INSENSITIVE AS TO DEVALUE MY CHILD'S LIFE."
Stranger: "Um....I was just trying to be nice. Over it. Bye."
Parent: "Thank you so much! Yes, my daughter with Down syndrome is amazing. Love her."
Stranger: "I noticed that she's been swiping at those chocolate candy bars for a while. I totally feel her on that. Kids always know where the good stuff is. Don't even need to be taught."
Parent: "Oh? Candy bars? Yes, she loves chocolate." (discovers stolen candy bar in Addison's purse that she's been eating all along) *face reddens*
Stranger: "She reminds me of my kids when they were that age! Little trouble makers. Adorable troublemakers...but stinkers nonetheless. Bless you. You're doing a great job."
Parent: Thanks that's so sweet of you. *works to wrestle chocolate from Addison's death grip.*
Stranger: (walks away with a huge, day-made smile at Addison's adorable, chocolate-covered laugh and smile)

As opposed to this approach:

Stranger in the grocery store: "I have a niece who's a special needs mom too! How old is your little girl?"
Parent: "Special??? You think I"m special because my child is special and rides a special bus and needs special things and isn't a NORMAL HUMAN BEING WHO NEEDS LOVE LIKE ANY OTHER CHILD????? How.dare.you."

We are missing connections and opportunities because we are getting caught up in semantics.

I know this because I am guilty of this on many occasions. Hindsight is 20/20...I am trying not to cut off the extended hands of kindness toward me just because they don't understand my perspective on all the things. We have to work together.

Having said all of that, I realize that this is just my opinion. We are allowed these on the interwebs....I hear.  I don't begrudge these other families their mission since it obviously means a lot to them. I know we all have sensitivities in different areas. Different paths off the same journey. I get this, and I respect it.

But I won't be participating. Maybe I'm the only one. Maybe I'll be the only "special needs" parent left while everyone else becomes "extra chromosomal needs specified by political correctness of the 2017 rules of Up Up" parents.

Who knows.

At least my title fits on a coffee mug. (-;

24 comments:

  1. Wow! You did a superb job of voicing my long held opinion. I just did not have the courage to voice it. Thank you for being brave.

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    1. Thanks for chiming in! This is such a tough topic!

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  2. EXCELLENT post, Deanna!
    At age 68 I have been witness to several "politically correct" words for this and that going in and out of fashion. I am not sure what the solution is. It is certainly a complex issue. (Now you have me wondering what I AM supposed to say , if not "special needs"!) If anyone objects to this post, they have their heads in the sand. A thoughtful post by a person who truly gets it.

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    1. I think people go after "differently abled" instead? Not totally sure? Just trying to navigate all of this best I can. Thanks for your comment!

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  3. I hear you! Thank you for addressing this.

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  4. Thank you for this! My children weren't born with any diagnosis at birth. We had all the testing, and they seemed "average" nothing stood out. But in the last year we discovered my daughter was born with Neuro issues that led to a cancerous pediatric brain tumor. She has had brain surgery, radiation, and is now going thru chemo. This will be a life long battle for her. She is clearly different after all of this. She is scarred, bald, has ptsd, and is lower cognitively then before. I too have caught myself advocating and protecting my baby (although 19 now) to the point it has held us back. Some people speak to us and I try to be respectful. I remind myself they aren't living this journey and don't always know the lingo. We have lost friends because they don't know what to say and distance themselves. I would much rather someone speak to us, ask the questions (even if not phrased to today's standard) than whisper or avoid us all together. We are all just Moms who love their babies fiercly and want their lives to be fair and good. We want them to succeed and have every chance in the world to do their best despite diagnosis and differences. Deanna, you are a awesome mom to your brood. Ellie, my daughter and I read your posts and follow you on Instagram. Your family is precious!

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    1. Thank you so much for sharing your story with me! I agree 100% with your beautiful words. Thank you for your kindness and for chiming in. Love love love this.

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  5. So beautifully said, both you and commenters

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  6. Totally agree!!! To me the intention of people is SO much more important than their wording.

    I have tried to phrase it this way to people who I know well and who talk about 'oh I saw this cute Ds baby this week' (they like to tell me since my daughter has Ds).
    I say: I have no problems with you saying it that way, but there may be people who take offense and then explain about 'people first language'. I also make it a point to say that I hadn't heard about it till I had my daughter, so that I understand why they haven't heard about it either.

    But yes, if we are going to scrutinize every single well-intended word people use to see if there maybe could be something wrong with it, we are taking advocating too far or in a wrong direction!!

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    1. Intention is everything! Love your perspective and thoughts here.

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  7. Thank you! Beautifully expressed! As a parent and a teacher, I deeply appreciate your insights!

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  8. Every child is special, each in his/her own way.

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  9. I LOVED this. I have often wondered about it myself and have been guilty more than once on saying nothing at all so as not to offend. The truth is that everyone is fearfully and wonderfully made. :) I try to teach my kids that God made everyone special and yet sometimes it is difficult to know what to say if anything at all. :) Thanks for this post.

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  10. Thank you so much for writing this. Our granddaughter was born 6 years ago, and none of us had known ahead of time that she had Down syndrome. We knew very little about Down syndrome, and didn't know anyone else with that diagnosis. She was in NICU for a while because she couldn't swallow well (she still has a G-tube), but did not have heart problems, or any of the other things that could have been a problem. A week after she was born, my husband wrote an email to several of his friends, saying "she's pretty healthy for a Down syndrome baby" as he expressed how grateful we were that she did not have heart issues.

    One of his friends forwarded the email on to his cousin who has a child with Down syndrome. She responded, and thankfully, he lost the email for about a year before forwarding it to us. I'm so glad we had that year, because the response from this lady was devastating to me. She accused my husband of not valuing our granddaughter, and not thinking of her as a person, and went on and on about how horrible we were, all because my husband, one week into having a granddaughter with Down syndrome, called her a "Down syndrome baby." We had never even heard of person-first language.

    My husband was easily able to let this roll off his back, and said that she was responding this way because of her own experiences, and it didn't pertain to us. I was deeply hurt and angry, however, and it took days of prayer and asking God to change my heart before I was able to let go of my anger that she would attack my husband so fiercely because of what was truly ignorance of the "correct" terminology. I knew my husband, and that he loved our granddaughter deeply, and did NOT consider her less than human. I was finally able to let it go, and realized that my husband was right; the lady was speaking from her own pain.

    I agree that it is better to engage rather than to ignore a person with Down syndrome, or any disability. And for the families, it is good to remember that most people aren't trying to be mean, so we can all show grace.

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    1. When Addison was born our parents struggled with the same sort of reference to Down syndrome, and we never doubted for a second that they loved our baby fiercely. I'm reading your heart through this comment, and I see so much love. I'm sure your granddaughter feels the love and wisdom that you have to share. Attacking people for word order can be so hurtful. I'm sorry that you have felt this sting. Blessings to you.

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    2. Thank you, Deanna. We do Abby with all our hearts. She is such a joy.

      I enjoy your blog. Reading blogs has given me so much understanding of Down syndrome and the everyday challenges and victories that families face. Thank you for sharing your lives with us.

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