Tuesday, November 4, 2014

'Mom, why are people staring at us?'

By Christina Herbers

It was a chilly Saturday morning as I drank coffee and thought about a family activity that would be fun for both of our girls. I decided that we’d spend the day like many other St. Albert families, so we headed out on an adventure to Servus Place Rec Centre.

My husband and I were excited, as it was the first time our youngest daughter Addison was trying out her new hockey skates. We packed up all of the skates, snow pants, mitts and toques, piled the girls and all of their stuff into our mini-van, and headed out. We entered Servus Place.

And then it started.

I had tried to prepare myself on the van ride over: People will stare, I told myself. Don’t let it bother you. Just enjoy your Saturday. But, despite best efforts, it always gets to me.

“Mom, why are people staring at us?” asked Addison, 3, voicing the words in my head.

I’ve asked this question for seven years, ever since my daughter Jaina was born with multiple disabilities. But I wasn’t sure I knew the answer. Why was this simple question so difficult for me to answer?

Should I tell my younger daughter the truth? And, if so, what is the truth, or what version of it is she ready for? I want to protect her innocence.

I wish I could open it up to the strangers who stare. I know we are different, but because you stare silently, you magnify the differences.

I wish I could ask people: Why do you stare? Do we make you uncomfortable? Do you have questions? Do you feel sorry for us? Do you pity us? Do you love Jaina’s pink wheelchair? Maybe you have not yet seen a beautiful angel like our dear daughter Jaina. Maybe she is the first angel child that has crossed your path. You see, Jaina very nearly died before she was born.

In January 2006, my husband placed his hands on my belly and felt Jaina kick for the first time. I thought to myself, we’re halfway there!—halfway to fulfilling my dream of having a family. I was 20 weeks pregnant, and my baby would be born in another 20 weeks, sometime at the end of May.

Then the car accident happened. We were driving home from a dinner with friends. In an instant, the baby I had dreamed of suffered a major injury. My spleen burst upon impact, and my baby went without air for a few minutes. In those minutes her life changed forever. A key part of Jaina’s brain stem calcified, so she would never be able to walk, talk or breathe or eat on her own.

I’ve come to believe that our beautiful Jaina was specially placed in our family for a reason.

The reason wasn't clear to me initially. I went through all the stages of grieving the child that I thought I would have. When Jaina was in Stollery Children’s Hospital for the first months of her life, I was in serious denial. Then, for many years, I was angry. And now, I can finally accept.

I believe Jaina is here to guide us to a future where we all belong: a future where families like ours are not stared at, where we are welcomed with smiles.

Let’s open up the dialogue between us. Ask the hard questions. Bring your children and come over to say hi to our family. Ask me how we are doing. Ask about the weather. Ask me about Jaina. Just talk to me. Include us in your community.

Together, let’s abandon our outdated beliefs about what defines the “typical family.” Let’s work towards a future of acceptance and inclusion. Let’s create a supportive community, one made up of people and families of all types.

Some of us may look different, and some of us may speak different. And some may be angels walking among us. That is my Jaina. She is here to bring peace. She is a calm, peaceful force. She does not suffer, and she is not in pain. She has fought to be here since before she was born. She does not know any different. To her, she is perfect, just the way she is. She has touched many lives, and I hope that in some small way, she can touch yours.

Christina Herbers is mom to girls aged five and eight. She works part-time as a consulting engineer, and is a writer, volunteer and weekend warrior living with her husband and children in St. Albert, Alberta.


This is a wonderful piece - I really love the photos...
These words struck me - 'she is perfect the way she is' - having met Jania in person, I can say this is really true.

I hope that your piece, Christina, makes us look at our own values and ask ourselves - why do we stare or look away? What are we so afraid of?

Thank you so much for putting in words what I’ve been wanting to say for many, many years. My own perfect daughter is now 21, and we get stared at whenever we’re out and about. it doesn't seem to bother her, but it really gets to me and sometimes, when I’ve had enough, I just stare intensely back at them! That makes them stop. Our children belong in our communities and need to feel accepted and supported. They need to be seen so that everyone understands that we all have a responsibility to help care for our most vulnerable citizens.
Please submit your story to the Toronto Star. It needs to reach a wider audience!

All best wishes to you and your family!

Alison Galley

This is an incredibly difficult part of having a child with visible disabilities. And what about when your child with disabilities finally realizes they are being stared at? That happened to us and it was heart breaking. (see the link I shared) We all just need to work with others to use those moments to help them interact with our children knowing that positive interaction will help others in the future. Great piece!

Thank you Alison and Sue and Keith.

Keith -- I don't see a link here to the story you mention? Could you please repost it as I'm sure people would like to read it.


Hello you beautiful people! I love your article and I can see the beauty of your family shining through the picture ! I'm so grateful for advocates like you and the commenters. Thank you ! My son has ds-asd. I was just thinking yesterday how much he has taught me and how far I have to go to catch up with him.
For example. If I get lost for the third time on a trip I will say "I promise D , we will be at the hotel in 1 hour!" He will smile and say "Oh Boey !" cheerfully.

it's not that I'm staring...I look over to see which easy I can help especially when Hans are full. I was at the store and seen a mother with 3 children under the age of 4. I looked and walked over loaded her groceries while she got the kids buckled. So don't think every person is just being rude maybe they are trying to figure out how to help.

as idiotic as this may sound: 5 seconds is a very long time, relatively. curiosity isn't often a trained or regulated reaction--you understand...but then, I think some people stop seeing and fugue deep into thought, hence that 'duh' mug on their face. They may be blessing you or thanking God. Can you begin the hello? forgive the ignorant their not having the lesson. Smile and teach. enure. TV grew the country's comfort with bi-racial couples, then gay couples. what you see often you no longer see. Maybe you could start some people watching and see how long people look at certain shirts on people, fingernails draw more than a glance. Sheiks, burkas, kids on leashes, in wheel-chairs, with cute or no hair cuts, bi-racial all draw more than a passing glance. Tell your daughter who asks that peeps are staring because she has such a pretty dress or that those people wish they had pretty daughters of their own. don't make her biased or negative or defensive...that means she'll find others offensive. no one wants that

Jaina is an angel to our family. So blessed to have her in our lives and have our children exposed to this amazing strong little girl. Amazing article Christina, you have come so far and we are all very proud of you.

Thanks Christina! You continue to spread the love like all of us--- one happy day at a time is our motto...xox in Kelowna!

So proud of you Christina. Your article will inspire many people. We all have challenges in our lives... but they are just all different ones. You have a wonderful attitude and thanks for sharing it with others. :D xo

I just stumbled upon this, as I was "surfing the web" trying to find a babysitter for my own special little guy. Mine has Tourette's, ADHD, and major anxiety.
I know all too well the feelings of discontent, anger, and frustration when people stare, point, or verbally assault my wee one.
The hardest things to ignore are the comments such as " that kid needs a darn good lickin'!"
Normally, when I hear someone say that, I look around to see if they have children with them. If they do, I will usually come back with " I'm sorry that my son offends you...it must be nice to have such wonderfully normal children, who don't cause you grief" ( as their kid sits in the cart picking it's nose ) " My son has Tourette's. He can't help it. The medication isn't working. I wish I could find someone to watch him while I shop, but it's incredibly hard to do so when I'm trying to get him to try clothes on/trying to figure out which food he'll eat."
If they don't have kids with them, I'll explain that he's special, that he can't help touching things, or shaking his head, or screeching. I then offer to let them take him home if they think they can do a much better job at raising him. lol!
The problem is that he looks "normal". In our house, we bash "norms" as we like to call them.
Well, we don't really "bash" them, but we do joke around that it must be horrible to be just like everyone else. How sad their lives must be not being special like us.
In our family we have muscular dystrophy, Tourette's, diabetes, ADHD, anxiety, etc. All of my children are special in one way or another. I wouldn't give you a dime to have a "norm".
Our lives are so much fuller having super loved kids!
Each day has some sort of goal that is met...and is celebrated. Norms have nothing to look forward to except first words, an "A" on a report card, graduation, etc. Norms have so very few things to celebrate.
In our house, trying a new food is cause for excitement! " Look! He tried raisins!" YAY!!
Touching new textures is the same.
"Look at him! He has paint on his finger!" YAY!!
I feel so bad for you parents with "norms".
Don't get me wrong, "norms" can be fun too, (and you get to keep your hair) but our special ones keep us young, keep us in good shape, and keep our hearts from shutting down.
I feel privileged to be the mom of such special young men.

Your daughters are very beautiful! Be proud!
If people stare, just say " beautiful isn't she?" or " She just needs more love!"
Like others have posted...it may be that they feel bad for you/her.
Maybe it's because they are trying to figure out what's wrong with her. Or maybe they're "norms" and can't see the beauty in life!
Regardless, it's best to say something. My youngest one made a new friend a few months ago that way. His tics were out of hand, and we saw another little boy who was being "busy" as well. The little boy hit my son. I didn't freak out. Instead I approached the mom and said that my son has Tourettes. She then informed me that her son has O.D.D. Perfect match! The little boy then hugged my son and said " mommy! This is my best friend!"
Doesn't get much better than that!
If I see you uptown one day, I'll be sure to approach you. If I stare first, it's only because I'm trying to make up an excuse to approach you...and to make sure you're the same person in the picture. lol!
Hang in there. Just keep in mind that some battles have to be fought with kindness. Sometimes we need to ignore. Sometimes we need to be the backbone and approach others first.
But most importantly, we need to love.

Here's a wonderful article about a couple of organizations working together to enrich families with unique needs, both visible and invisible. Christina and Terrie are both familiar with their initiatives...


Your story is truly inspiring. Through your writing you have been able to capture just how difficult it is for society to understand that yes people are different but it is okay to have questions and feel comfortable opening up and ask those questions. I hope that through reading your story people will understand that yes there are hardships but also many more moments of life that are unforgettable, that you thank god for every day. Thank you for sharing your experiences with us and helping us learn that the most important thing in this world is love and acceptance.

This is beautifully written, and you have so captured exactly how we feel in our family too. Admittedly, you are 'preaching to the choir' here - as those of us who are reading here share similar situations and views. I would really love to see this article be republished widely in a more public forum where it could really reach out and hopefully touch people who are the "starers" out there -- who really don't grasp what they mean to us to do so.

I hope you will consider sending out into the general media in the hopes it will be printed/shared.

I actually designed a Tshirt for my daughter to wear which is to stop starers in their tracks. Some folks I shared it with said they thought it was too harsh. I don't.

It says "Disability isn't a choice - but your attitude is." [something along these lines]
I never did get it printed - but certainly have considered doing so.

I would train my daughter to say " Mom, why are people staring at us?" really, really loudly and repeatedly.

I sometimes stare, because I'm invisibly disabled and I like knowing I'm not the only disabled person in a public place. I also stare because I'm curious about how other disabled people live their lives - especially when I see someone using adaptive equipment or a clever technique to do something that 'should' be impossible for them.