Random Acts of Kindness

I believe that our small acts can create that fundamental change, a ripple effect as people go about their day, seeing the kindness around them and passing it along to others.

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Having a child with Down syndrome is challenging, for sure. But raising a child with special needs has brought many blessings into my life as well. I am especially thankful for the kindness we have received within the Down syndrome community and our community-at-large. I know this kindness existed prior to Evelyn. The world didn’t become kinder, I just became aware of the kindness that existed around me.

Prior to Evelyn’s birth, I kept to myself.  I had a few close friends, but I wasn’t interested in forming more relationships.  I didn’t see the point.   But when Evelyn was born, I longed to connect with people who would understand what I was going through and not judge me for the the feelings I was experiencing.  This need drove me out of my comfort zone and into the social arena.  I attended playgroups and Mom’s Night Out.  I joined online groups for parents of children with Ds and other disabilities.  I shared my true self with other parents, and they shared theirs.  Because I was open to meeting new people, I have been introduced to so many kind, thoughtful, supportive parents.  Yes, these people were out there all along, and Down syndrome gave me the push I needed to go out and find them.  This change carried over to all areas of my life, which is now full of kind people.

Small acts of kindness can be uplifting!
Small acts of kindness can be uplifting!

Having Evelyn changed my perception of people with disabilities.  Previously, I would have been apprehensive about approaching people with intellectual disabilities – worried that I would say or do the wrong thing, offend them and embarrass myself.  As a result, I didn’t interact with people with disabilities.  I now understand that people with disabilities are the same as everyone else.  Yes, some people might be offended when I put my foot in my mouth, disability or not, but most people will give me the benefit of the doubt.  I am lucky enough to interact with people with Down syndrome frequently through my work, and I am thankful for all of the kind words, gestures and hugs I’ve received, and everything they have been patient enough to teach me (like how to use instagram, and the art of comedic timing).

And the strangers!  So many people go out of their way to share kind words and smiles with Evelyn.  Complete strangers make the effort to let her know they welcome and accept her.

All of this was there, waiting to be discovered.  I just didn’t bother looking for it before Evelyn.  I’ve been given a fantastic gift – a change in perspective.  I’ve been able to slow down and appreciate all the kindness around me.  And when a person gets a chance to experience kindness, its natural to want to pass it on.  It’s a fundamental shift to want to share that gift with someone else.

Tomorrow is World Down Syndrome Day (WDSD), a global awareness day that is officially recognized by the United Nations and is dedicated to raising awareness and promoting acceptance of people with Down syndrome.  This year, to celebrate WDSD, our family will be teaming up with our local Down Syndrome Association to commit Random Acts of Kindness throughout or community.  I believe that our small acts will create that fundamental change, a ripple effect as people go about their day, seeing the kindness around them and passing it along to others.  I think it’s the perfect way to honor someone who opened my eyes to the kindness around me.  Maybe tomorrow, we can all make an effort to notice that kindness, great and small, and pass it on to someone else.  I think you will find, at the end of the day, that your world feels a little bit brighter.

Photo credit: Down Syndrome Association of West Michigan

What You Really Told Me When You Said Retard

Language is powerful.  What we say and how we say it has impact. I love someone with a disability.  I know how language can be respectful and uplifting and how it can degrade and demean.  I have done my research and made evidence-based arguments.  I should be able to discuss this calmly with you.  I shouldn’t be afraid to speak up.  I know I’m right.  But I also know this conversation can be a wedge.  It can make people feel embarrassed and uncomfortable – defensive even. I don’t want to make people feel ashamed and I don’t want an apology.  I know you mean well and have probably never thought about it before.  I’m not judging you, but I want you to understand how the words you choose matter to me and to Evelyn and other families like ours.

When you say, “I felt like a retard!” or “That movie was so retarded!” it hurts me.  Do you know what that word means?  That word was a medical diagnosis.  Twenty years ago, Evelyn’s medical file would have read “mentally retarded.”  And that would have been okay.  Because what that word used to mean is “cognitively impaired.”  Evelyn has cognitive impairment – it’s a fact.  But now, doctors don’t use that term anymore.  Because people started saying it like it was a foul word.  Like you just did.  It’s an insult.  It’s derogatory language.  Retard has been reappropriated in the worst kind of way.

Mommy EvieMade a stupid choice?  You’re a retard.  Something is ridiculous?  It’s retarded.  The insult is being like my daughter.  Think for a minute what that feels like to me.  When you say it, I never see it coming.  It’s like an unexpected slap in the face.  I feel my cheeks get hot.  I want the ground to open up and swallow me, because you think that being like my daughter is terrible.  You said it to demean someone or something.  I think about what it will feel like to Evelyn when she is old enough to understand that you choose to express your contempt and disrespect for someone or something by comparing it to her and my heart breaks for her.  I want to explain this to you, but I don’t know how.

If I do work up the nerve to say this to you, you might get defensive.  You might justify it by saying, you would never call someone with a disability retarded – you didn’t mean it that way.  But that is what that word means.  I mean, just because you say “duck” doesn’t mean duck anymore, that doesn’t change the fact that it does. It doesn’t stop you from thinking of a duck when somebody says it. Try saying her name.  Try putting Evelyn’s name in place of the word retard.  Say, “That’s so Evelyn!” when someone really screws up.   Do you get it now?

If you’re still not sure, you can visit r-word.org and find lots of personal stories about how the r-word affects people. After that, if you still don’t understand, it doesn’t really matter.  Because if you believe in respecting people and their feelings, it should be enough for you to know that it hurts, even if you don’t get why.  It should be enough to choose a different word.  It should be enough to make you buy a thesaurus. Just stop saying it!  I never want my daughter to hear it.