Re: Never Underestimate A Woman Who Listens To Metallica And Was Born In March Shirt
Hedy Madrid
Last Tuesday was World Down syndrome Day. And on that Tuesday, I got a unique opportunity to be a guest speaker for a group of future healthcare providers about the importance of our language choices when talking to and about people with disabilities. So this is what I wore:
Aside from the nervousness, the feeling that I kept having throughout the day was this: how did I end up here? How did I end up as the mom, wearing an advocacy shirt, sporting blue and yellow, giving a talk about thoughtful language, on World Down syndrome Day? How is this who I am now?
Never Underestimate A Woman Who Listens To Metallica And Was Born In March Shirt
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We have been renovating our kitchen. And office. And pantry. Most of the first floor, really. And by we of course I mean not we at all. There have been a number of carpenters, electricians, plumbers, etc in and out of our house nearly every day since the end of January. WE have done nothing but pay bills.
But the weight of these two things, handed to me in less than 3 minutes, was too much. I was so, so sad for CJ. I know he works hard, and I know we work hard to support him. And I wanted to be so, so happy for Bean. I know she works hard too, and I also know that because we work so hard to support CJ that sometimes it means she has to be more independent. And I think I felt happiness in that moment too, but mother eff it all got lost somewhere between the door of that coffee shop and the bench outside.
We had some success in a baseball league last year through a connection I had at work. I was grateful for the compassion my colleague showed, and how much he genuinely cared that CJ got a chance to do something he loved. CJ had an awesome time, and the coaches were supportive. But basketball has been harder.
While all of these books fall behind the forever #1 spot held by my beloved Harry Potter books, I truly LOVED reading all these books. So I started to look for a trend between them, and I noticed 1) they are all fiction and 2) they all have similar themes involving magic and/or mystery. Which are likely the same reasons why I loved, and continue to love, the Harry Potter books so much.
In September, AceBuddies hosted its first ever community event at our local zoo, a place that is often inaccessible, or impossible, to many individuals in the disability community for a variety of reasons. We had almost 40 participants attend the event (which was free to participants, caregivers, and volunteers, thanks to a generous donation from Mattingly Charities), where student volunteers provided a guided tour of the zoo, group exercises and activities at designated locations throughout the zoo, and tram transportation escorts when needed. Students were available to modify exercises, encourage participants, and support the family and caregivers of the participants.
In the process though, I also started wondering if it was possible that I was taking things too far. I found it pretty easy to see how nearly all of the phrases I investigated were offensive to others, so I tried to think of the most outlandish example of proposed language changes to see if I still sided with the offended.
I feel anguish at our collective disconnect in thought. The more we learn about any subject, the more we realize how complicated it is. We see more grey, rather than black and white; but on this subject, there is an outright refusal to see grey.
I feel shock that while no one can force me to allow my organs to be donated to save the life of another person, a state can now decide that my body must be used to save a fetus. How is it possible that my dead corpse has more bodily autonomy than my living, air-breathing body does?
Like several other now outdated and offensive terms, the slur was derived from a Latin word, in this case dating back to the late 15th century, to describe a delay in movements or actions. It was adapted by the medical community in the late 1700s to describe diagnoses that had accompanying delays in speech, cognition, and movement. The slur became prominent in the 1970s, typically used as a noun or verb, and is deeply rooted in the devaluing and discrimination of individuals with physical or intellectual disabilities. Despite the negative implications of the word, the medical community continued to use it, with journal article still carrying the term in their titles until the early 2000s. In fact, I listened to a podcast 6 months ago where the guest physician still used the term to describe kids on the autism spectrum.
Slang terms that you learned as a kid, without really knowing what they meant, have been part of your vernacular since youth. Those are hard things to undo. And before you can undo one, you learn about 10 others. It can be overwhelming.
After people shared the problematic nature of the words used in her song, she realized the difference between her intent and her impact (this is a phrase used frequently in advocacy groups). The negative impact it caused and how it perpetuated the devaluing of individuals with disabilities was obviously not what she meant, but it IS what happened. And ultimately, she is responsible for her words.
But, as I stand here, staring at my collapsible red wagon full of snacks, Frog Togs, lawn chairs, and Gatorade, heading to our 5th game in 2 days, I realize I can no longer deny the evidence in front of me.
-I found my district representative and state senators here You can search by state or zip code. Their contact information is hyperlinked below their pictures. In some cases, this dumped me to their personal websites. There were options to call, email, or write a letter listed there.
When we first got Happy the dog, I had visions of him enthusiastically running alongside me on mid-distance runs the way our old dog, Rudy, had. Rudy was a Weimaraner, with endless energy and endurance. Rudy was a focused, obedient (though sometimes impatient) runner, and a reliable pacer.
I saw a meme recently degrading parents for taking too long in the car line in the morning. For giving last minute hugs and kisses. For adding final touches to class projects. For making eggs benedict. And ironing shirts. All while in their minivans and SUVs, as not-so-patient parents behind them wait to toss their kids out.
For being awesome people, and loving others. For being a great example of what it means to be a caring human. For being incredible parents, grandparents, educators, and friends, helping to raise a generation of caring, inclusive people.
It makes me choke back tears any time I see kids connect with CJ. Like really connect with him. Go out of their way to help him or include him. Not because they pity him, or because their parents or guardians make them, but because they genuinely care about giving everyone space. Because I see the true kindness in that interaction.
I remember a lot of that first week as a new mom pretty vividly, even 10 years later. I remember how he felt when I held him. I remember the quiet panic I felt when I saw his eyes. I remember how our pediatrician told us what I already suspected. And a lot of that still hurts when I think about it now. I was so scared, so sad, and so confused. How could I feel those things on a day that was supposed to be so full of joy?
October is upon us. For many people, this is marked by cozy sweaters, pumpkin spice lattes, bonfires, and Hocus Pocus. And by many people, I mean me. But October also marks another important month in our family: Down syndrome Awareness Month.
Keeping CJ included in environments with his typically developing peers provides a wealth of benefits for him. He gets full access to the curriculum. He gets to observe positive, expected behaviors through peer modeling. He learns self-regulation of behaviors. He learns independence. These are hard lessons to teach, and are likely learned best through experience.
On a warm August morning, just two years ago, I was waiting apprehensively in a long, poolside line of triathletes. Like most other recreational triathletes, I was anxious to get the swim over with, so having to slowly march your way to front of the line felt a little cruel.
So as you scroll through your phone over the next few days, please add Paralympic.org to your scroll list, too. Have real conversations, about real athletes, who worked real hard, to compete in real events.
Six months ago, I called it an Internal Review Board instead of an Institutional Review Board during a meeting. No one in that meeting knows what I said was wrong except me. But here I am, still thinking about it. Anyway, follow me for more tips on how to not sweat the small stuff.
Truthfully, the probability of ANY of my kids growing up to be a professional athlete or physician is incredibly low. Same goes for your kids, too. According to the Bureau of Labor Statistics, 13,600 people in the US listed Athlete or Sports Competitor as their occupation in 2019. Actively licensed physicians? Nearly 1 million in the US. Regardless, when the current US population is over 300 million, the percentage of people that land into either of these two categories is about 0.003%. When I think about that more practically, it means that the probability is less than 1%. Or, perhaps more accurately, nearly 0.
Morgyn and her family have handled this situation so gracefully. Instead of demanding someone be fired for this disgusting display of discrimination, they have used it to highlight the importance of true inclusion. To bring to the surface years and years of similar stories from other families. They want to bring about real change so that no one ever has to face was Morgyn has.
Group fitness programs are more affordable, but they lack the inclusivity and perceived safety for which most families/guardians are searching. And arguably the most important factor in all of this is that parents are freaking exhausted. Between attending medical and rehabilitation appointments, managing IEPs, and fighting with insurance, there are still plenty of other tasks that need to be completed every day, like doing dishes and laundry, finishing homework, and making dinner. Tacking on another HOUR of something else feels impossible.
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