Spread The Word To End The Word 2018

Today is the annual Spread The Word To End The Word Campaign day, and I am all about encouraging people to take the pledge. The campaign asks people to remove the r-word from their everyday vocabulary and encourages those who take the pledge to help spread the word of their mission with others. Image result for spread the word to end the word 2018We live in a society where having an opinion is often an automatic right to discount the opinions and feelings of others and, essentially, where compassion is lost in a cloud of arrogance.  Let this not be a lecture.  Let this be a simple message.

These days people are often accused of being over sensitive. Words and phrases are sometimes used without consideration of how those words may affect those around them. After all, isn’t it much easier to just accuse someone of being over sensitive than it is to acknowledge that we may have been responsible for offending someone else in the first place? Sure.

There are a number of ways these scenarios play out when someone uses words like retarded. Some people just let it go; wishing they had the perfect way to respond to someone or wishing they were brave enough to speak up…(typically me). Others confront the situation head-on and let someone know that their words hurt and that they did not like it. Either way, it stings.

When confronted, the response from people who use the r-word varies which can further complicate the situation. They are those who unintentionally used it and would feel terrible knowing it offended someone. Those who insist they didn’t mean like so and so. Those who hear what you have to say, but suspect you’re just being dramatic. And those who refuse to let their free speech rights be taken away by a bunch of whiners. *Sigh*

If choosing another word is so simple, why do we have a campaign each year asking people to simply do so? This brings out the real question…why should people choose another word?

Sometimes we need a reminder to be considerate, courteous, compassionate and polite. It literally costs nothing to be kind. The world could use a lot more of that right now. Small changes like removing the r-word from our vocabulary helps create an inclusionary and accepting attitude of all individuals and it helps support the notion that everyone deserves respect.

Words like retard or retarded might not mean anything to some people, but to many others–like me–they do. I promise I am not stripping anyone of their first amendment rights. I am challenging people to be better for others and for themselves and asking people to choose words that don’t place limits on those with intellectual disabilities or medical needs in an attempt to describe something totally unrelated.

I am not over sensitive. I am just a mom of pretty awesome kid with Down syndrome hoping for a shred of decency and Respect from those I share the world with.

If it really is just a word, then please consider a different one…a better one.

Take the pledge. Sign it. Share it. Remember it.

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This post is comprised of excerpts from past Spread The Word To End The Word posts here on Dear Tessa. 

Where In The World Is Down Syndrome Going?

I really should avoid drawing attention to this negative topic today, on my daughter’s sixth birthday; however, it is probably as good a day as any to discuss an issue that is weighing heavy on my heart.

During a few moments of free time this morning and afternoon, I shamelessly scrolled through Facebook to pass some time because…why not? Within a few swipes up, I realized that nearly all of my news feed was saturated with posts about CBS running a story on Iceland and the country’s extremely high termination rate for babies given a prenatal diagnosis with Down syndrome. It was probably more noticeable to me because a large majority of my friends on Facebook are fellow parents of a child with Down syndrome or self-advocates. Other countries like Australia are part of a very similar discussion.

If any of this is news to you, then go ahead and click on the links throughout this post to get up to speed.

I would like to point out that CBS actually used this headline:

“Iceland Is On Pace To Virtually Eliminate Down Syndrome Through Abortion.”

On pace? How nice. Are they racing someone?

The idea of eradicating Down syndrome is a controversial subject, and obviously it does not sit well with me. My college roommate used to always say, “…variety is the spice of life, my friend.” While the phrase used to crack me up, she was absolutely right. Maybe she wasn’t referring to people as much as she was cheap beer selections, but seriously. Since when did we as the human race get to decide that a population of people no longer gets to exist or that those lives have no value? Most importantly, what are the reasons that justify this? 

Six years ago today I sat in my hospital bed, isolating myself from reality while I digested the news of my daughter’s surprise birth diagnosis of Down syndrome.  Like many unsuspecting parents, our world was rocked.  When we were offered prenatal testing while I was pregnant, we declined knowing that we would not change anything about our pregnancy; and that our arms and hearts would lovingly welcome our child.

Did that make receiving the diagnosis less difficult? No. Were we scared? Out of our minds. We had no idea what to expect. We were left with our own drawn up versions of what we thought Down syndrome was based on what we could remember as kids; which–by the way–was basically nothing.

Thankfully for us, our doctor was compassionate and kind. She was all we had at that moment to tell us anything about what it meant to be born with an extra chromosome. While she did deliver some common, basic facts about Down syndrome, she did so in an unbiased and professional manner. She also reassured us that our daughter would live a full and wonderful life with us, and that she was certain that we would all be just fine.

I can only imagine what these parents in Iceland are told their lives will be like with a child like mine and how untrue what they’re told really is. Conflicting, outdated and biased opinions about Down syndrome as a whole. But you know what? It is happening right here too. The horrific diagnosis stories I have been told by mothers here in America continue to blow my mind. I wonder if doctors and parents saw another side of Down syndrome–the human side–would the percentage decrease?

Truthfully I can only speak from my perspective, and I am comfortable with my beliefs. While I am aware that there may be other factors and circumstances such as additional complex medical situations that contribute to the decisions that are made, I wonder about the decisions made to terminate based solely on the diagnosis and whether or not the information that is given is accurate and consistent.

Let’s not forget about the individuals with Down syndrome that are alive. What does this message of “eliminating Down syndrome” say to them? That they don’t matter either? It sure sounds that way.

Patricia Heaton for the win on twitter yesterday:

As parents, we spend a lot of time fighting and advocating for our children. Much to our dismay, we often seek to prove that our children are capable of so much more than the limitations society places on them. We push for inclusion in school and the workplace, we fight for health care coverage and we encourage people to see their value. Now we fight for their right to walk on this earth.

You do not need a heart of gold to raise a child with Down syndrome. But you do need an open mind, the courage to embrace something unfamiliar and the belief that each life has value.

You know what? We are fine. Totally fine. My beautiful girl, charming and wicked smart, does not suffer from having Down syndrome. She never has. Her siblings have not suffered either. Anyone that has met her would tell you how awesome they think she is. Something prenatal testing cannot predict about anyone.

Is raising her easy? Not always. Raising my spirited four year old without Down syndrome isn’t easy. Helping to parent a stepchild also isn’t easy. There are few things about parenting that come with ease. Period. 

The hardest part about having a child with Down syndrome has not been the diagnosis itself; it’s the annoyance of having to explain to she deserves to be here. 

We are weeks are away from sending our six year old off to her first day of first grade in a mainstream school, and today we celebrated her sixth birthday with her friends. In another part of the world, parents are being told their unborn child (who may or may not be born with Down syndrome) does not have a place here.

Where does this end? If Down syndrome is no longer, who else will fall under the magnifying glass? While Iceland is “on pace” to “eliminate,” or kill, Down syndrome, I am on the fast track with a community of others to share that the world is big enough for everyone–including people with Down syndrome.

That’s just my two cents on the matter…