Tag Archives: educate

Marvelous Monday

What a wonderful weekend- jammed packed with all I am thankful for and all things dwarfism! I have mentioned LPA about a million times, and all the support they offer to the LP community, but there is so much more than that.

There are lifelong memories made by friends who see each other a few times a year. Parents who lament all the silly things that we get that no one else truly does. Not life-altering stuff, but finding shoes that fit, are cool and also comfy. Why moving a faucet can make life easier for your child. How to hem jeans. It’s the same old parenting things we all think about, but rarely do we encounter so many seemingly minuscule things over and over and over.

The best part? When Addie gets into a large group of kids, there are no worries because this community is watching over her- everyone.

This mama may be suffering from serious pregnancy hormones, but when Jackie and Avery (two fabulous young ladies) took Addie’s hands and walked her to their dance circle complete with other girls, and encouraged her to dance, laughed with her and never let her out of their sight, I walked away, took my seat, gripped a cup of ice water and swallowed my tears. My face was hot. My body felt cold.

#aisforadelaide #firstdance #lparegional #2014

My daughter already has an amazing life.

I watched what her Spring and Fall would bring each year, as our District regionals pass by. I saw middle school dances and girlie laughter about things that us parents would just never understand. As I sipped my water, surrounded by women I’ve grown to love in our brief, but powerful 21 months as LPA members, we laughed at my verge of crying.

#aisforadelaide #ladiesnight #LPAspringregional2014

I have an amazing life.

These moments are not forever. We have our struggles. We have some of the happiest moments of our lives without the LPA, or anything related to dwarfism. Being little, or big, or average does not define us. Having such fabulous friends, regardless of distance, giving my child the opportunity to live her life and being guided by those around me. That defines me. There is nothing like knowing that your life changes shape when you let go of the reigns and just live.

With $100 in our pocket and a cooler full of fruit, bread, peanut butter and tuna, we went to Cape Cod. It was our first regional with our LPA district. We got to ask questions. We got to answer a few. I shared a conversation with men and women. Some were my height, some were not. But the conversations were the same. Our kids were being crazy, they all needed to sleep, we all enjoyed the sunset at the banquet, our clothes seemed to be getting tighter as the New England winter ceases to end. I joked with my ladies about this and that. We all ragged on each other, shared hugs, high-fived the  kids.

Being members of the LPA has allowed us to NOT define our family by dwarfism, but to learn in a safe, well educated environment for ourselves, our daughter (and future baby!) and those who will learn from us. To balance our lives between doctors and normalcy, because at the end of each day, I am doing the same as any parent… reading 102 books before bed, watching my child guzzle more water than they consumed the entire day and praying they don’t spring a leak in the night, kissing her cheeks and watching the monitor (sure, I’m also listening for snores and leg movements, but that’s neither here nor there). Addie? She’s just like your child. And me? I’m just like you. Tired, stressed and loving every minute of this crazy, fast-paced thing they call Parenting.

#aisforadelaide #swimming #capecop #seacresthotel #lpaspringregional2014

And my random  of the week? If you missed it before, don’t forget to check out this awesome video below <3 <3 <3 (Yes… I’m a bit excited to share after holding it in for 13 weeks!!!!!)

Happy Monday, Reader!!!

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Society’s Illogic, a Tragicomedy

written by Katherine Clarke:

To preface this piece, I would like to quote my younger brother.  In a written conversation, about a year and a half ago, he shared the following:

You’re extraordinary because you see the world’s flaws – and thankfully you’re smart enough to ‘understand’ that while they are not always fair, they are an inevitable force we all must face.  Life is about dealing with other people.  It’s totally unfair, biased, annoying, and infuriating at times, but the world is random, and we have to accept the uncertainty and the inability to control others.  Being the center of a crowd is a powerful position to be in – to say and do the right thing.  You have the power to be that person.  And I say that with total disregard to you being short-statured.  I don’t believe you are aware of the power your presence commands, Kate.  Because of the ridicule I fear you only ever feel ‘little’ when you need to simply be Royal in your own way.  People are right; you are intimidating because you’re strong-willed.  

My brother’s supportive email correspondence came to mind after noticing two recent posts on Chelley’s Facebook wall.  The first post captured her reflection on Lent:  “I’m giving up beating the shit out of myself.  No negative comments, no self hate or criticizing my face, hair, and body.  Hoping it sticks.”  And the second post highlighted an article detailing a concert review of Miley Cyrus’s performance onstage during her “Bangerz” tour.  The news article was originally posted via Chicago Sun-Times’ website.  And illustrated on her wall, Chelley stated the following comment in reference to Mark Guarino’s “Concert Review:  Miley Cyrus at Allstate Arena”:  “The use of the m-word and the fact that someone chooses to be a part of something comparable to a ‘carnival of curiosities’ is mind boggling.”  Chelley is right.  And my own evaluation on the subject is an attempt to justify why I agree with my friend’s point of view.  Yet, before I could finish drafting my collective thoughts, editors at the Chicago Sun-Times removed the “m-word” from their web-based article.  A victory, indeed.

I want to revisit the content in Chelley’s post on Lent.  For Lent, I, too, am giving up beating the shit out of myself.  My mother once told me, “Bitterness, Kate, can destroy a woman’s beauty.”  I can’t compete.  I surrender.  My mother – she’s right.  I did not sign up for the haggard look.  The original Chicago Sun-Times post was tragic.  The language it used to identify a person’s short-stature was a tragic blow toward the understanding of humanity.  And we all know the Nursery Rhyme that suggests we should not fall victim to name-calling, right?  “Sticks and stones will break” our “bones,” but the connotations of certain words will “break” our spirits, too.  But instead of beating myself up, I invite my audience to consider this message.

Aaron Sorkin is a well-known playwright and film director who coined the phrase “Tragedy Porn.”  The term was featured in the first season of the popular HBO television series The Newsroom – a drama Sorkin created, produced, directed, and scripted.  Its context (i.e. Tragedy Porn) describes how news stories can become something similar to a “reality show” that audiences will “indulge in” purely for “entertainment”; however, the information shared in the rundown is often tragic on a distasteful level.  Case in point – Miley Cryus’s recent antics and the “midget” backup dancers she employs on stage.  And to revisit my brother’s honest and compassionate thoughts, he said:  “You’re extraordinary because you see the world’s flaws…they are an inevitable force we all must face.”  It’s neither fair to see nor hear the media use such vulgar language to point out a rare demographic – dwarfism.

I do not like facing this ugly stigma that gets more attention in the media’s spotlight than the intellect and literal happiness I share with my students in an academic, college classroom setting.  And I find myself asking why?  Why is “Tragedy Porn” in the A-Block and not the normalcy that is my life?  I can’t help but wonder if society fears the power I possess?  Believe it or not, my brother, in the same written conversation, answered my question:

People like to watch destruction, not be a part of it.  But I think it’s easier to join in with someone who’s passionate about something.  Your success in leading a conversation will come when you find a way to shift the light successfully on “America.”  Write from your experiences, your observations, your wishes, your ‘understanding’ of what it is like to be a short-statured woman in a world full of contradiction and fallacies, not from your distaste and disappointment.   

My brother is talking about assimilation, and again, he is right.  I am a part of this country.  Langston Hughes said it perfectly – “I, too, sing America.”  I am a part of this world.  My students appreciate the information I have to offer them.  And yes, some of the information stems from my own experiences, observations, and wishes.  They can see my intense passion and strong desire to promote the power of the human mind and its ability to engage inquiry.  That reality is NOT tragic.  It’s awe-inspiring.

I can go the other route and continue to offer reasons why I am “disappointed”; that is, disgusted by the internal feeling that often keeps me up at night.  The feeling that convinces me I must fight in order to prove my integrity as a woman – to show “America” I am not a caricature referenced in a “Tragedy Porn” sensationalized mess of a news story.  But I can’t do that.  I won’t.  It will make me bitter.

The Bully-Centered Mentality, post Charles Darwinian, Survival of the Fittest world we live in capitalizes on the power it can hone by belittling individuals the Status Quo deems unfit.  It’s a ruthless competition.  Both the media and those who participate in the freak-show of a “carnival of curiosities” create the spectacle that brands this erroneous image of dwarfism.  It is difficult for me to ignore that bitter reality.  It is a sour, unpleasant taste my palate does not care for.

Again, my brother said it best:  “It’s totally unfair, biased, annoying, and infuriating at times, but the world is random, and we have to accept the uncertainty and the inability to control others.”  So I will return to Chelley’s comment on Lent:  “I am giving up beating the shit out of myself.”  It’s the right thing to do.  And I think it’s safe to call my brother the Oracle.  Extracted from the same written conversation:

Kate, the media perpetuates these phantasmal lifestyles, but these days, humans crave stimulation more than anything – it’s our lethal legal drug.  Technology has completely changed who we are as people – we eat for pleasure, not survival – kids fight for recognition, seeing it as success to be the next Laguna Beach idiot or Real World superstar – but you and I both know there is an actual real world out there.

I hope the media chooses to push the envelope, but in a different kind of way, in a way that is so far removed from the degrading “Tragedy Porn.”  As an alternative, I hope the news can offer a stimulating story on something that hasn’t been told.  A story about the beauty of intellect, intuition, and sincerity.  A story about those who are extraordinary, positive, and STRONG-WILLED.  That’s attractive.  That’s desirable.  That’s power.  Is it possible for the Status Quo to recognize, accept equally, those who are different have the potential to command great power?

 References

“The Blackout, Part I:  Tragedy Porn.”  The Newsroom.  Dir. Aaron Sorkin.  HBO, 12 Aug. 2012. Television.

Clark, William.  “Re:  A Worthy Conversation.”  Message to Katherine Clark.  12 Oct. 2012.  E-mail.

Guarino, Mark.  “Concert Review:  Miley Cyrus at Allstate Arena.”  Voices.Sun Times.com.  Chicago Sun-Times, 8 Mar. 2014. Web. 8 Mar. 2014.

Hughes, Langston.  “I, Too.”  The Harlem Renaissance:  Hub of African American Culture, 1920-1930.  Ed. Steven Watson.  New York:  Pantheon Books, 1995. Print.

 

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Marvelous Monday

And, we’re back! I hope all enjoyed the superb owl… I was cheering for the Eagles (ha… birds… get it? No? Ok… I’m done being punny). So, after a beautiful week last week and a ridiculously warm weekend, I’m preparing for Punxsutawney Phil’s prediction of 6 more weeks of winter and we are having the oil tank topped off today. Hooray?

This week I am thankful for the blessing of staying home and blogging- for the ability to work at getting my writing career off the ground and spending so much time watching Addie grow. I love that she is so independent, but I also love that I’ve fostered that. I’m there to see it. Most of all,  I love that my readers see that, too.

A few emails come in each month from new parents, or parents-t0-be, of children with dwarfism. Some have a million questions, some have fears, many just want to say thanks. For that I say, THANK YOU!

I love that so many read this blog- for information, for silly stories, recipes, giveaways (like THIS one or THIS one), for charts, to educate… just because you stumbled in here… I love each one of my readers. Truly. But more than anything, I love that so many know that I am here for them. So many moms, dads, grandparents, teens, family members, and friends have clicked the contact form and emailed me. Whether it is just a simple hello, or if you have  laundry list of what-if’s and how-will-I-knows. I am here. I always will be.

From the moment I sat on the hospital bed, watching the littlest wonder finally resting, hooked into a handful of IVs and monitors and heard achondroplasia, I knew we had one of the most beautiful, albeit different, journeys ahead of us as parents. If you need to reach out, do. I have the opportunity to help you, and am so thankful that I do.

*  *  *

And… some info for parents looking for help: The Shriners! This is not just for dwarfism needs, but I just learned about the Shriners and how they help families who may need medical assistance, specialists and equipment! Yes, equipment.

We have recently run into a few issues with climbing, safety and the like with Addie and spoke to our Early Intervention PT about this… but because our health insurance can be a bit finicky about crucial things like sleep studies, we both knew they would not be forth coming with things like chairs, or other home care items. With this in mind, we were directed to our local Shriners Charity Trust and have an application in! We are very excited to have some assistance with keeping our crawling, climbing, jumping, hanging lady safe- without the muscle tone, coupled with her determination, I fear (more) head falls in the future!

For more information, contact your Early Intervention office or local Shriners (Google search!) for more information and an application to apply. Specialists are also in their realm of assistance- some of the best in the country! I hope this helps families looking for another option to care for their child- let me know if you need help finding out more!

*  *  *

And I know you’re looking for some random, so why not give you some? Take this as you will. For me I mean it for my Life, but some days I have to say this by the hour. Just this second, just this minute, just this hour, just this day, just this week, just this month, just this year. Just this life. Do with it what you will, but remember:

This is it #aisforadelaideblog

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Marvelous Monday 2014!!!!

HAPPY NEW YEAR!

Now that’s out of the way, onto our usual MM post (thankful, dwarfism, random)… Hold onto your hats. It’s gonna be a long one!

This week I am thankful for the 2 weeks Addie and I have had with Dave. Yes. TWO weeks. We left for Philadelphia on the Saturday before Christmas and we got back to RI the following one. Dave headed into work for Monday and half of Tuesday, had New Year’s Day off, then Hercules dropped some snow on us and Dave was home Thursday and Friday. As he heads into work today, I hope he feels the relief of being back to a schedule.

#aisforadelaide #hercules #newengland #snowstorm2014 #blog #asnowday in the Martinka house

Since his time off I have not gotten out of bed before 9am. Most days, not before 10… and there were a few 11′s in there. True story. I ate a hot breakfast almost everyday. I showered more than twice a week. I dried my hair, by myself. I did my nails, put on a face mask or two, deep conditioned my hair, read half a book, caught up on reading some of my favorite blogs and resumed some semblance of a daily workout. This refreshing end/start to the year(s) was so important to getting my head on straight… and brings me to other things to be thankful for- like the way Dave has changed and his awesome boss.

Spending time alone with Addie when she was an infant was hard for anyone but me- her sole provider of food and the one who understood each cry and sound. Now that she’s (incredibly) vocal, understands requests and direction and eats pretty much anything that’s not nailed down, I find myself alone when Dave is home. Off on some adventure, Dave steals Addie while I sleep to make food, run errands, or read stories in her bedroom. We both give each other the eye in some strange competition of Who Will Be The One She Wants to Put Her to Sleep Tonight. When she’s hurting, Daddy can heal her pain and when she needs snuggles at night, she often begs for Daddy to rescue her from the crib. While it is nice to not have to get up at 4am, I’ve found myself pushed to the edge of the bed, sad. I miss the days she needed me so much.

#aisforadelaide What happens when Dave doesn't work #blog

Then there is the look. The look of peace and warmth. It’s what Dave’s face looks like, even at 6:30am when hungah spews over and over from the mouth of a half-awake toddler into the open space of our room. When she cries waahwaah hungah nanaaah and he hops up and asks, “you’re ready for breakfast, Bug?” There is the look of total contentment. Whatever happens to a woman to feel the love she does for her young happens to a man, too. I’ve seen it first-hand.

#aisforadelaide #blog #weekend

I’m also incredibly blessed that Dave’s boss recognized that his employees come in by train from Boston and from 50 miles away by car, and decided to cancel work before the snow hit. With a few calls and some research, Dave stayed on top of the tail-end of his work week from the safety and warmth (and yet, drafts?) of home. For a job he stumbled upon with a start-up just 3 years ago, his career is blossoming in ways we never could have foreseen.

*  *  *

And so she grows. No really. I just wrote about this on a post of the same name: AND SO SHE GROWS, AND SO SHE GROWS. If you know Billy Joel, you will see my play on words from And So it Goes, and you may recognize the true heartache that comes with watching your child grow up mature. When Addie was diagnosed, we were warned about all the things she would never do and we were told of all the milestones we would miss. We were given predictions about her height and told she had to be on a hard surface always and most toys were a no-go and her balance would be bad… and so on. And after all that, I was overwhelmed and sad. We got rid of bouncers and carriers and sleepers. I found toys that were good for her, but not always mature enough. And I didn’t know where to go. As a new mom to a special needs child, I wish I’d known all of THIS.

But I didn’t, and I wasn’t prepared for a doctor to be wrong. But she was. Not because all babies with dwarfism do walk before 36 months, although many do, or because she’s not as small as I once believed she would be, or that she has decent balance. No. I wasn’t prepared because I got lost in a negative world. I don’t always see Addie as growing up… she doesn’t always gain an up, but she does grow in her intelligence, in her beauty, in her love and understanding and in her compassion. Initially I was worried I would hinder her into a sheltered life- one where I would hide all the bad. And becoming CPL didn’t help that fear. But then I saw. I saw her say “HI!” to everyone she meets, and wave with an exuberant “BYE PEOPLE”, as we exit any given location. I have witnessed her love, as I cook dinner and she reaches around my leg with a hug and a pat and whispers love you, mama so gently into the back of my knee. She loves me, without prompting or pressure, without even seeing my face, she buries her own into my leg and expresses her own emotion.

Do I protect her? Yes. Just as I will put a helmet, and knee and elbow pads on her to ride a bike. Just as many parents do. I didn’t wear knee or elbow pads and my helmet surely did not fit as well as they do now… does that mean my parents didn’t care? Am I just over-protective? Should she never ride a bike?

I could wrack my brain forever. I could worry about all the things you might think of how I parent, or how your neighbor might feel about me, or that dude who anonymously comments on my posts in the most negative of lights. But then, I wouldn’t be parenting, I would be absorbed in my thoughts about everyone else’s thoughts. So, let’s call it a truce. Let’s make a pact.

This blog was started with the intention to education about dwarfism, but if I focus on dwarfism alone, I will alienate myself and you. I will become obsessed, immersed in so many details that I will come to define Adelaide as a person with dwarfism, and not just see her difference as a part of her. I will come to define all people with dwarfism as just that, and if I do that, I will only see myself as a white woman. That will be who I am.  But it’s not. And so, this blog will continue to educate, advocate, spread awareness and push buttons. I will share stories of change and some of adversity. And here’s the best part: I don’t care what you think. While I would love your support and hope you stay to read more posts, what I crave is equality. For my child, for your child. I seek name calling, bullying and fear of the unknown to become a thing of the past. Ask questions- all of them. I want to answer. I want to know your fears so that I may assuage them. I want you to know what terms are accepted to call a person with dwarfism, and I want you to know that you do not have the right to dictate what others feel. Neither do I. On this blog, the m-word will not be tolerated, whether you’re speaking of pickles or humans or anything in between. The word? Midget. And that’s the end. Those are my feelings, on my blog that I write.

So, I won’t judge you, on your blog, should you choose to write one, and you will not judge me.

x_______________________________________________
      emotionally sign here

*  *  *

You’re still with me? I hope so!

I wanted to recap last year’s resolutions (only 3), which I found when I named my resolution post this year: THIS YEAR, I RESOLVE. Somehow I picked the same name, two years in a row, without trying. I guess it’s a series, now!

From last year’s POST:

1. Be nice (to me): Yeah. That. Well… I am better, and I don’t bash myself in front of Addie, ever, but recently I’ve noticed my sweet girl pointing to the scale and saying, “mama.” So, clearly, I still need to work on that. I wish I could take the scale away, but I truly believe it is useful- especially for long runs. I weigh myself before and after to make sure I am not dehydrated. I also check my weight more often than I should, but now I need to be aware of not doing this while Addie is awake. I think this is something many women need to work on, and clearly I am still trying to justify my need for a scale. Regardless, though I am nice-r to myself, in no way am I nice.

2. Know when to hold ‘em: So I still like to fight, but Dave and I are good about holding our tongues and I try to not speak to him in sarcastic tones because I truly do not want Addie to pick that nasty habit up! This is something I am still working on, but I think I will always have to be conscious of my words and actions as I’m a bit of a sailor-mouth with a temper.

3. Earn it to own it: Nailed it! I took time for myself each day to write and came up with 269 posts last year. This year I aim to write posts with just as much heart as ever… and add some time to take care of my fitness goals, too!

So there it is… Monday! I hope you have a beautiful week, Reader!!

xo

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Marvelous Monday, Indeed!

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Filled with Thanks

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Filed under Community, Educate/Adovocate/Make Change

Marvelous Monday

It’s Monday (again!), and I am ready for the week ahead- just 5 days until my parents (mom and stepdad) dock in Boston then Newport on their cruise!

For starters… I am thankful for my LPA district. We have a lot of events planned and though we cannot afford to go to most, it is always a treat when we get to go- and even more awesome that the one this weekend was the first time Dave was able to join in, too! This is also my dwarfism shout-out this week! A few people have found this blog, or me via Facebook, but they have yet to check out the LPA. This organization has been crucial in our education about dwarfism, as well as supporting us as we find the best doctors, activities and parenting advice.

I cannot say enough good things about the national level of the LPA, but it’s the local chapter that really created the close-knit community that I’ve grown to depend on. Mamas and papas who know the ropes have explained so much to me, as well as reaffirmed my belief that Addie can do whatever she puts her mind to- dwarfism is just a part of her, it does not define her. This was totally the case as she led us through the cornmaze at our Halloween get together in Southampton, MA at the Rolling Acres Farm!

cornmaze

Lastly… my random of the week is a huge THANK YOU to Jen from JLS Photography! We grabbed a LivingSocial deal months ago for such a great price, I must admit I was skeptical but… After postponing our summer session due to Addie’s tendency to overheat, Jen braved a threatening sky to take our Fall portraits last weekend at Lincoln Woods State Park. It got a bit chilly, and Addie was squirming for a snack, but she stuck it out with us and made our holiday card decision difficult! These are a few of my favorites, but won’t make it to your mailbox (I couldn’t choose them all for our cards!). As usual, these pictures are not for copying or sharing without permission. Thank you!!!!

AddieandDaddy

Adore

Fall

giggles

innocence

missindependent

Peekaboo

reality

Rockon

Superbaby

Thebeach

themartinkas

thesetwo

thetreeoflife

Wereobsessedwithher

Have a beautiful Fall week!!!

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Would you do it again?

I wanted to write a brief answer to this question… I’m not so good at brief, but here goes.

It comes from more than one parent who beg to know: after your experience in the media, would you do it again?

Yes.

My answer online was this:

If I had the choice, I would do it all over because the faces of our babes brings a normalcy people literally do not expect. I was attacked for the most part… And what was said against Addie was towards me and never to her. You HAVE TO PREPARE YOURSELF. From behind a computer screen, people can be ugly. They lose their humanity and compassion and have a false sense of power. No one controls you or your emotions. Be strong, know that what good comes from advocacy, true advocacy from the heart, will ALWAYS outweigh the negativity.

But it’s more than that. It’s the fact that I did bring change. The hundreds (thousands?) of people who made horrible comments didn’t change that. One mom. Me. I changed it. I made a video, I emailed it. I called to check up, was placed on hold, told change was made, and blogged about it. That’s it.

The threats, the harsh words, the emails, letters and comments- those didn’t come from me. They didn’t come from my community. They came from faceless screen names, behind hidden IP addresses. They came from people who left no return address, fake emails, dummy Facebook accounts, private profiles, and never-used YouTube accounts.

I will never be pleased that anyone saw Addie as exploited, which is why all of her images are watermarked on this site and why I will take legal action if her image is misused (no, that’s not a challenge, but I will protect my daughter). This site is for family to live life with us from their parts of the country, for friends to keep in touch, for people looking to read a bit of humor or a lot of sarcasm, for people looking to learn more about dwarfism, parenting and living on a really tight budget and an unlimited resource of love.

Seeing Addie’s face, her beautiful, but different, body- that’s not something I will hide. Her belly is full, her sleeves are rolled and her hats are 4T while her age is still under 2… but her smile, her bright eyes and her first steps? Those bring a normalcy to dwarfism. A human aspect. She’s not magical (well… not in that way, but she is to us as her parents). She does what all kids do- and some stuff they don’t, and she’s not. Sometimes we are forced into a role of “poster child”, and while I don’t wish this for Addie in a detrimental way, I do hope that people think of dwarfism and think “I know a kid with that, and she’s just like my kid, or sister, or cousin or neighbor.” There is nothing mysterious or scary about dwarfism, but there are changes that need to be made and advocacy work left to be done.  I hope this face brings our community closer to the equality we so strive for.

As for the question… I’d do it all over again. And again. And again. Because the m-word in one less place is 1,000 more educated, aware, and compassionate people.

Does dwarfism look different to you?

Does dwarfism look different to you?

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Filed under Community, Parenting/Family/Lifestyle

Splish Splash

A YMCA swim team age division, formally known as “midgets” went under a renaming to “novice” thanks to a family in Pennsylvania. The family who made this change consists of courage, triumph, heartbreak and perseverance, and I cannot wait to meet them at the LPA National Conference next month!

I have been in contact with Mom of the family for quite a few months, and we have talked about it all, from fresh farming to daycare issues and many things in between. I have learned much from her, as she is older than me and mother to two- and when she had first mentioned the swim team name, I was ready to write letters and emails in support… but the best part? I didn’t have to.

Here are a few excerpts from their story sent to me by Mom.

This morning my husband discovered that our local YMCA’s 8 and under swim team is named the Midgets. I can’t believe I hadn’t noticed before since I drop Child off at daycare there since September. A quick Google search reveals it may be a name used NATIONALLY.

***

I had a nice conversation with someone from the YMCA organization last night about the use of m-word that is used to describe age division in their competitive swim. She told me that the use of m-word among competitive swim teams occurs only in PA, where I live. She agreed with me that it was unfortunate that it continues to be used and she was confident that my request to have it changed would not be ignored or protested. She provided me with the name and email address of the newly-appointed swim coordinator in PA. His response is below and I’m satisfied with it. I’ll follow-up with him in a few weeks or so.

I did speak with our local Y swim director to let her know about the discussion and email. She told me that she double-checked our facility to be sure the word did not appear on anything. The only thing she could find was on a roster which they will discontinue using.

Again, here is the email from the PA swim coordinator:

Hi Mom of the Family,

Pennsylvania swimming does not have an official term for 8 and under swimmers. The youngest age group for our districts and state championships is 10 & under (which we call “cadets”). Most areas of the state use the term “novice” for 8 and unders. I will look into where the term “midget” is being used and encourage them to make the change.
Until ***  sent me an email yesterday, I was not aware that anyone was using anything other than “novice”.

I will keep you posted.

***
YMCA PA Group Representative

Amazing stuff, right?

This Mom took the time to make a few phone calls to her local Y and at the state level, and was answered with understanding. And change! I want to say that being CPL was crappy… because it was. Sometimes, it still is (although it does bring change- did you read YESTERDAY’S POST?), but for the most part, I am so proud of what our community can accomplish by just asking. Just like this Mom, I was met with understanding from a company who admitted they were a but behind the times and were ready to move on. Due to the anonymity of online commenters, “trolls” came out to speak their minds, though only from the safety of their monitors and screen names. Though many are still afraid of the backlash they may receive from their local communities (and possibly nationally), I am proud of the numerous who have made changes- whether they choose to share or not.

I proudly educate about dwarfism, as well as encourage all to reassess their verbiage. Many who still use the m-word do so without the intention to harm, but not all good intentions end up as such. Raise awareness with me. Share your stories. Make a change. I don’t expect to alter history, but I do hope to brighten the future. Thank you for taking this journey with me.

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No names of the Family written about will be released due to personal preference. If you have a story to share, please contact me at review@aisforadelaide.com or through the contact page. Together we can make a change- let’s share how, together!

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Filed under Community, Educate/Adovocate/Make Change

The Dust Will Not Settle…

My motto is, and will remain: Do not be reactive. Be proactive and educate.

Just to clarify a few things:
There is not and never will be a lawsuit regarding the recent outrage about pickles.
Am I after the almighty dollar? Yep. We do it the old fashioned way: working and having a birthday every year (thanks, Mom).
I am happily married to the father of my child- his name is Dave and he’s an amazing man.

I have many thoughts about the recent events that have transpired, but truthfully, you already know them, as I have been open and honest. I am thankful to have the opportunity to live in this country where I am afforded the right to speak freely and express concern. In this way, I was expressing concern about a word on a pickle jar… I am also in the midst of writing to other companies about products and speaking with local community centers about not having midget leagues, teams or squads. While years ago (read: 1800’s) “midget” was a medical term for a person of proportionate short stature, and then used and adapted to describe circus entertainment, it has evolved into a mean word, used in mockery and bullying. It is, in fact, not just mean or offensive, it is derogatory. While you may be not offended by it, others are, including myself on behalf of my daughter. I spoke up about it in compassion, offering my support to this company in any way that I could- including to educate- whether they made a change or not.

To everyone who thinks I wasted my time educating and being proactive about something that is very close to my heart, let’s speak to those who have chosen to not just voice an opinion, but to attack… like Gerry (I will not release his last name or email address). Gerry is a 62 year old retired grandfather of 2. He contacted me through this blog. According to his email to me, Gerry is “balding badly and sick to death of all of you politically correct, effete snobs who get offended at any little thing. Maybe I should try to have “bald faced lie” removed from the lexicon?! Or protest all of the “senior memory care” jokes out there?! What a bunch of BS you are.”

I’m not sure what senior memory care jokes are… but if they offend you, I encourage you to write a letter or call your local news station. Gerry informs me that, “I am contacting Gedney next and telling them they have lost me as a customer. I’ll bet you are very pleased with yourself.”

If I am wasting my time simply trying to educate about something that matters to me, what is Gerry doing as he hunts me down through an article, reaches my blog, sends me this scathing email, and then spends more time contacting a company to say he won’t buy their product?

The answer? Wasting his time on something he doesn’t care about, and seemingly doesn’t affect him. Please know that small dill pickles will still be available.

There has been an assault on me, something I do not care to stop, although it does not make me “pleased” with myself. On this blog, I will accept ALL comments about me- good, bad and indifferent. I will even try to respond to most, however I am being inundated by all media outlets- please be patient. I will not, on the other hand, accept negative or threatening comments about my child or husband. I have had to delete only one on this site, but several on YouTube, including thoughts hoping my child would be hit by a bus and that she’s an abomination.  Someone superimposed a picture of my Addie on a jar of pickles with the m-word. Was this meant to be funny? Nope. It was meant to hurt. This word is KNOWN to the public to hurt and demean and this person knew it.

A fellow blogger posted this: From Themomofalltrades

As for the folks who go with the old stand-by that the word “midget” isn’t always used to mean an offensive word for a little person, I ask you this: Did you know that the swastika was originally a symbol that meant life, good luck, sun, power, and strength? Do we still associate that symbol with such things? No. Now, the swastika is a symbol of hate, violence, anti-Semitism, murder and death. How would you feel to walk into a grocery store and see a jar of pickles emblazoned with a swastika? Even if you’re not of Jewish descent, you still probably wouldn’t feel as though that symbol was appropriate. If the company originated hundreds of years ago, when that symbol was still one of good intent, failure to change the symbol when times changed would be inexcusable to most.

While people post they “hate” me (a stranger they’ve never met), others have used my personal social media pages to type obscenities about me, my daughter and my husband, from behind the safety of their screens. There have been stories told to me about radio DJs taking sound bites of me out of context and mocking me to the delight of their callers. While you call a mother who meant to make the world a better place “stupid” and an “idiot” (among the most G-rated of many vitriolic comments), I think you are “mean”. That is your right and that is why I do not feel the need to patrol each site to the belittlement of myself, and fight back in comment. I have not hidden from people who wanted to know more. I did not seek media attention, but when offered, I chose to educate. What people have done with the knowledge is their decision. I have, thankfully, had a beautiful, albeit private, warm reception from hundreds of people. To the few who found me on Facebook just to be hateful, there were over 100 strangers with no previous connection to myself or dwarfism, offering their support and kind words to someone just trying to make the world a better place. While the blog has received hate, it has also been an outlet to people who have no opinion, but respect a mother’s prerogative, and others, who downright agree and want to know how to help. I will say this once: help by educating. Do not argue, threaten or blame. My message is one of peace- I simply want to make a change for the betterment of society. Companies, teams, and the like, once using this term simply as an adjective for size, need to be (in my mind) educated to its other definition. One of hate. One of bullying. Derogatory. What they choose to do with this education, is their choice. I celebrate your freedom of speech, and respect your opinion- whether I agree, or not.

In NO WAY do I believe myself to be akin to Rosa Parks, however- she wouldn’t give her seat up on a bus. I’m sure (beyond the fact that it was illegal at the time), her move was considered stupid and benign. But guess what? It changed the world. A chocolate and licorice candy called N*Babies went through a name adjustment to Chocolate Babies in the 1960′s, due to changing times. This word has also been banished from the lexicon, almost entirely.  I am not looking for a word to be stricken from the dictionary, just from common vernacular. Is this going to be a rights movement for LP? Probably not, but if I bring some awareness, I’ve achieved my goal.

I will repeat this, and I’m sure I will write another post about this once the dust settles, but my mission was and remains to be proactive and to educate. Team names have been changed in the past, labels on products, including Aunt Jemima’s (several) changes and the debate over the name Quaker Oats, which have nothing to do with Quakers and seems, to some, like a ploy to get people to think the brand is honest (not my thoughts, just what I read from others), and Albino Rhino Beer. There is a litany of examples I have found and all have met with some, if not a lot of, resistance to the change. Albino, by the way, is a medical term. Midget is not.

I firmly stand my ground. I want the m-word taken off products, sports teams and other items that use it in a casual manner- I believe that its use in this way promotes the idea that the word, in general, is OK. I am not in the business of suing or strong-arming anyone into agreement. I am here to educate.

I agree with everyone who reminds me that many kids, not just my own, will be bullied and made fun of- but does the derogatory word used towards people with the same diagnosis as my daughter also have the be the same word on the pickle jars at our local grocery store, or on the front of her sports uniform, too?

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Filed under Achondroplasia, Community, Educate/Adovocate/Make Change, Parenting/Family/Lifestyle