When Asking Someone to Reach a Shelf at Whole Foods Felt Like Defeat

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It happens; difficulty, struggle, challenge and pain.

On this particular day, Whole Foods won the lottery as the place I happened to be when my candle, burning at both ends, nearly went out. It was one of those moments when my dwarfism became a source of indifference rather than a source of compassion.

Usually I can make do obtaining things that are out of my reach or conquering other extraneous obstacles that stand in my way. It started early, as a kid. Scaling the counter tops in the kitchen, climbing my bookshelf, reaching the pantry shelves — whatever it was, I was able to devise a plan and conquer it. Sometimes I was successful on my first try and other times, not so much. As a child, though, my innocence shielded my struggle. Society hadn’t jaded me yet. Challenges made my confidence wobble, but I never gave in to feelings of complete defeat.

One of my favorite memories goes back to elementary school. My best friend’s mom was a teacher and would give me rides to and from school in her giant Izuzu Trooper. To a little girl topping off around 3 feet 6 inches, getting into such a large vehicle was a bit of a challenge, but nothing I couldn’t handle. To get into the car I would open the door, put one foot on the running board of the car and then hoist myself up holding onto inside of the door. Then, using my washboard abs (what I would give to have those again), I swung my other foot into the car and pulled the door closed. Most of the time my plan was flawless. One day, I wasn’t quite in the car yet, and my friend’s mom began to drive away with me hanging onto the door. From the backseat, my friend and I both began to scream and laugh, and it wasn’t until her mom actually turned around to glance and notice that I was flailing in the breeze, hanging on for dear life. She eventually stopped, and I was able to get back into the car. I really did think it was funny. My little girl ego wasn’t scarred or embarrassed.

One of the most terrible things anyone can experience is the indifference of others. As I got older, it became harder to habitually brush off society’s ignorance towards my stature. I began to lose the confidence and ability to laugh at any situation I once possessed. I was no longer that brave, confident little girl. The continual disregard for me as a person began to drown my positivity.

As a grown woman standing at 4 feet 11 inches, reaching items on the top shelf in the grocery store continues to be a bit problematic. Usually I can climb the shelf or ask someone for help. Usually.

It was just like any other typical shopping trip to Whole Foods. Go in for just a few items and waltz out having bought more than was necessary. As far as dinner was concerned that evening, I knew exactly what I wanted, and the hard taco shells were the last item I had to cross off my list.

There I stood in the international food aisle, staring at the box of blue corn taco shells on the very top shelf… or maybe they were staring at me. Bottom line: in that moment, I wanted that box of taco shells, but getting them was going to be a challenge.

My nonchalant attempt at climbing the shelves to reach them proved unsuccessful. I tried jumping, quickly, to avoid creating a scene. But I barely grazed the taco shell box with my fingertips. My next attempt was even worse. Pushing my shopping cart to the side, I opted for a more gradual ascent up the grocery store shelving. After securing one foot a spot on the bottom shelf, I thought I’d bought myself more leverage and hang time. Nope. I actually ended up pushing every box of taco shells further back on the shelf, completely out of my reach.

My frustration was building. Looking to my left and right, there wasn’t a soul in sight. I’m was in the middle of Whole Foods on a weekday evening during dinner time, and there is no one else in the Charleston area who is having tacos for dinner! Am I the only one who celebrates Taco Tuesday around here?! Ugh.

I didn’t want to give up, so I tried once more to get that box of organic blue corn taco shells off the top shelf. With one hand hanging onto the top shelf for dear life and a packet of taco seasoning in the other, I tried to swing the edge of the box closer to me using the seasoning packet. Fail. The harder I tried to reach those f*cking taco shells, the closer I got to my breaking point. My heart sank. I was angry and resentful. Why couldn’t this be an easy trip to the grocery store?

My overgrowing frustration led me to consider another attempt. Right as I was about to put my foot on the third shelf from the bottom to boost myself up, I envisioned everything coming crashing down on top of me. There I stood, once again, my eyes now beginning to well with tears (I was so frustrated), and there was still not a person in sight to ask for help. Somewhere between the enchilada sauce and chipotle peppers, tacos no longer seemed appetizing.

Whole Foods: 1, Kristen: 0.

A box of blue corn taco shells caused me to fall victim to feelings of complete defeat. In the moment, my heart hurt. The thoughts of “Why me?” were whirling around in my head. Wallowing in self-pity, I wiped away the tears and turned to check out, forgetting about Taco Tuesday altogether. Before I had gotten a full step toward the register, a little old lady rounded the corner at a snail’s pace, talking on her Bluetooth.

There I was, one hot mess, lingering in front of the refried beans, pickled jalapenos and taco paraphernalia. Slightly hesitant, I decided it was worth a shot to interrupt the woman’s conversation to seek her assistance in getting my top shelf prize. Trying my best not to be too socially awkward, I raised my hand (Who does that? This wasn’t a first grade classroom!) to get her attention.

“Excuse me, ma’am.” She looked at me like I was about to ask her to write me a check for $1,000. “Could you reach one box of those taco shells for me, please?” She looked relieved. Without saying a word, continuing her conversation, she got the box of taco shells down, handed them to me with a smile and moseyed on down the rest of the aisle. Quiet enough not to disturb her conversation, I said, “Thank you,” because I was, indeed, grateful for her help.

Blue corn taco shells safely in my cart, I couldn’t quite figure out how I felt. Asking for help can be hard. In that moment, I had two choices: allow my asking the woman for help to take make me feel powerless, or see it as proof of my strength and determination, and step into my power. With my mind continuing to create limitations, boundaries of separation I hated so much, even after I left Whole Foods, owning my strengths was difficult. Sometimes you just can’t help having the tiniest bit of resentment for being you. I found myself saying that I can’t, that I’m not good enough and life is just hard.

Sigh. It happens. It’s normal. The more I resist those feelings, the more intense they become. I have learned to let them in and let them pass. My reality is that I don’t have limitations — I create them.

Having this mindset of “no limitations, no boundaries and no separation” is a powerful one. It allows us to become unstoppable. The truth is that if we let them, our weaknesses can become our strengths. Our disabilities reveal abilities, our fears indicate our potential, failures are lessons learned and our challenges are mere roadblocks, not dead-end streets — if we allow them to be. Certain circumstances may be unavoidable, but our mindset, potential and success are created by us alone.

Living with a “disability” (that is how some people may view dwarfism) isn’t always glitter and rainbows. Asking for help can sometimes feel shameful. The staring, laughing, pointing and rude comments hurt. Sometimes it isn’t as simple as “just brushing it off” and moving on. The pain and disappointment seep under my skin. It can be overwhelming at times. But I am allowed to feel sad, scared and angry. I’m human. I have feelings. And those emotions – they are valid. So are yours.

In reminding myself that I am enough, I know it has nothing to do with me. I am a strong woman aware of society’s ignorance. But how long your legs are, who you love, how much money is in your bank account and who you worship should never be the basis for ridicule or judgment of any kind. It’s the size of your heart, your compassion and your determination that matter.

I am not a sympathy seeker. In owning who I am and opening my heart, I am able to embrace my own vulnerability. This gives rise to courage and strength that sometimes I forget I possess. Sharing my vulnerability with others has brought me empathy, joy, love, the knowledge that I am enough and the hope that you realize that the same — you are enough. No sympathy necessary. Only gratitude.

When we strip away the physical, we experience ourselves and each other for who we are. Each of us has known difficulty, struggle, challenge and pain; they happen. In being sensitive and accepting of this truth, we unite in love. We all have a choice, and those choices matter; whether it’s picking yourself up and starting over, moving on or asking for help. One of the most important choices we can make is to choose love and compassion, for ourselves and others. Indifference should never be an option.

woman sitting in middle of street
Kristen shows off socks that say “Perfectly me”

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When Gym-Goers Said Inviting a Dwarf to a Party Would Be ‘Hilarious’

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It’s a Monday evening and I’m at the gym, quéll surprise! It’s my home away from home — I feel welcomed there, like we are a family. A crazy, back-talking, punch-face-playing, dance-off-competing family. I like that about a small gym.

As I’m walking over to the cubby holes where we store all of our huge bags of gear, two of the guys, who are regulars, are trying to get my attention.

“Jenn! Jenn! Come here, we have a question for you,” shouts one of the men as he motions me over towards both of them.

“S’uuuup,” I drawl in my lax, boxing-gym-friendly tone.

“Jenn, we have this friend,” he begins.

“Yeah…” I respond hesitantly.

“And he’s getting married.”

“And..?”

“And we wanted to throw him a bachelor party.”

“Good for you,” I deadpan.

“But he’s, like, really big. Huge guy. I mean huge guy.”

“Your point being?” I now know where this is going.

“We thought it would be hilarious if we hired a guy, a midget –”

“Dwarf,” I interject.

“Yeah yeah, midget –” he continues.

“Dwarf or little person, please,“ I interject again.

“Yeah yeah, dwarf, midget….to come to the party and hang out. Wouldn’t that be hilarious?”

“I would die laughing,” the other one chimes in.

“How do we do that?” he asks me excitedly.

“Um, well, first, no. I don’t think it’s hilarious. And second, there are individuals with dwarfism who do that sort of thing, so, I’m sure if you searched the internet you could find that.”

The other one posits the question, “Dude, Jenn, why don’t you do that!?  You’d be great at it!”

I respond, “I have a brain and a job that pays me to use that brain and I’d prefer to do that than exploit myself and get paid to be laughed at.”

They went on to explain that the reason they wanted my point of view is because in their group meeting at church (yes, church) one of the other members, who is a teacher with a little girl with achondroplasia in her class, found what they were suggesting to be offensive. They wanted me to assure them that she was overreacting. Quite the opposite. I applauded her for standing up against stereotypical acts and I stated, “She’s right. It’s hurtful to a group of people to make fun of them because of a genetic condition, in this case dwarfism.“

This is where the conversation ended and at that point I walked away to change into my gym clothes. Later on that day I still was ruminating about our conversation. I couldn’t stop thinking about it. I gathered together a bunch of articles and websites and sent an email to these two in hopes of making a difference and showing them what it is like to try and overcome a stereotype.

Before this disconcerting interaction, I had thought to myself, “I think they have been able to accept my dwarfism.” That they respected me and saw me as their equal. I had taken the extra time to prove myself by trying to being a good example and share with them some personal stories in the hopes of creating an empathetic bond. In short, I let these people in. And that is a hard thing to do when every day those of us with dwarfism have to guard ourselves against the general crap that is thrust on us.

Unfortunately, this is not the case. Not all of them respect me, and some of them may never. Some may never respect me because they just can’t get past the dwarfism. And thinking about that is upsetting. I am a walking, talking, living, breathing, teaching entity. I can’t escape the stares, the questions, the constant observation of my every move. Having dwarfism will always put me in the front of the group, begging questions from everyone staring at me: “How did she get that way?” “Look at her on her own, how inspiring!”  “What type of ‘disorder’ does she have?” “Is she smart?” “How does she drive?” “OMG! I’m going to video her and upload it on the Internet!” “I wonder if she knows Peter Dinklage?” (I wish!)

When an average person walks into a room, most people don’t have any predetermined thoughts about them. They simply just walked into a room and that is all. But when those of us with dwarfism walk into a room, generalizations tend to flourish and we become the characterization of our observers’ previous exposure to someone with dwarfism. So if the exposure was good, then we get that same good perception. But if the exposure was bad, we embody those negative examples associated with our stature and are treated in the same way.  That is a hard concept to accept and even more difficult to experience. Society is slowly changing and is starting to recognize the individuality of people despite their similarities within a minority.

The next day at the gym one of the men was there and told me he got the email I sent and that there were some really great articles in there. Awkward silence dotted our conversation. I was waiting to see if anything had clicked. I don’t know if anything made sense to him or if any of it made a personal impact on him and how he treats others who look different than him. Maybe yes. Maybe no. But the seed was planted.

They know how I feel, and how others in the community feel. They know where we are coming from. I can’t change them. Only they can choose to make that change for themselves. I have said before, “Things are changing, advocacy is working,“ and while that is absolutely true, we still do run into setbacks, and that’s OK. All I can do is give them my point of view and hope they decide to make that change for themselves.

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The Mighty is asking the following: Share with us the moment you stood up for yourself or your child in regards to disability or disease, or a moment you wish you had? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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5 Secrets of Being a Special Needs Mom That Make Me Thankful

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I’m sitting next to my son, Samuel, who is snuggly secure in his car seat. He leans to the left as I sneak a kiss on his cheek. He smiles and leans back. I pucker again, and he leans toward me for another kiss. I oblige and am rewarded with another brilliant smile.

We play the game until we arrive home.

Evelyn.2-001

As I unbuckle him from the car seat, I’m still smiling. These are the moments that bring me great joy. As parents, I imagine we all have those precious cherished times we tuck in our heart.

I often hear others say they could never do what I do. The thought of raising a child with special needs can be seen by some as a herculean task beyond what a normal person can bear. I’m often commended for my role as a special needs mom, but here are a few secrets I’d like to share.

Secret #1: You get used to the world of medical equipment.

Living with a child who needs a ventilator requires an understanding into the world of medicine most of us don’t encounter. We learned to change Samuel’s trach, suction, give manual ventilation if needed and became proficient in all the emergency equipment required. You get used to it. The world of medical equipment and using it to keep your child well becomes second hand. This is our new normal.

Secret #2: I believe God gave us grace and an incredible peace through it all.

The first few years of Samuel’s life were a challenge. Our son spent six months in the hospital and returned home to 24-hour nursing care for several years.

But we took each day as it came. If we faced challenges regarding Samuel’s health, we prayed for him to get better. That’s not to say we didn’t have hard days, but we all have hard days, don’t we?

Secret #3: Your child will surprise you.

The respiratory therapist told me we should have a ventilator party the day my son doesn’t need it anymore. My mind rejected the idea. Didn’t he know my son has a condition where he’s not expected to ever come off the ventilator? Perhaps he won’t need this life-saving equipment during the day at some point. Maybe. But to come off it completely was incomprehensible.

My son has been bucking the odds since the moment he was born. About two years ago, we were able to turn off the ventilator. The impossible happened. I count this as a miracle.

Secret #4: I don’t think I could raise our little guy without someone special.

I have an amazing husband. You may have heard the phrase, “God gives special children to special people.” In the case of my husband, I agree. Early on, he understood the medical aspects of Samuel’s challenges, from understanding the dizzying world of positive end-expiratory pressure (PEEP) to designing an apparatus used as a reminder to turn off the oxygen tank. And Samuel loves his daddy. They have a tender relationship of love and respect. He almost always listens to Daddy.

Secret #5: Our days have become extremely normal.

Our son loves his daily routine and will only get upset if he’s teething or when he wants his cereal. We have a lot of moments like the kissing game where pure joy overflows. And though I understand there are many differences between my son and a child without his diagnosis, we have found our happy place.

So we continue to parent our little guy who was given a “not compatible with life diagnosis” called thanatophoric dysplasia dwarfism. We don’t know what his future will bring, but we cherish each smile, every giggle and many milestones. And as we continue this journey, we see the secrets that surround us and are thankful.

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The Emotion I Try to Conquer as a Special Needs Mom

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While dreaming of being a mom, I imagined lavishing all my love on a wee one. I’d dress her in frilly dresses, make pancakes with her and talk like best friends. Never having had children, I didn’t know what to expect.

I found out having a son (yes, I had a boy instead of a girl) is like having my heart live outside my body. I never knew my emotions would be so tied to my child. What happens to him feels like it’s happening to me.

Those feelings can be amplified when you’re a special needs mom. There are the euphoric emotions of love, joy and happiness. Then there is the emotion many mothers attempt to conquer: fear. This is my battle. I found myself yesterday clutching my arm in a tight grip. I loosened my grip and realized my anxious thoughts had a hold on me, literally.

young boy smiling at camera

My son’s allergy/cold symptoms are the source of my anxiety. An allergy or a cold in most children isn’t cause for grave concern, but when your son’s primary challenge is respiratory, this momma’s heart goes into overdrive.

Memories flooded back to the last time our son had a cold. Sleeping through the night was replaced with suctioning, breathing treatments and medicine in precisely timed intervals. We slept in the living room with all of our clothes on in case we had to rush our son to the hospital in the middle of the night. I shudder even writing about it.

So the runny nose, suctioning, breathing treatments and extra oxygen occupies my mind while remembering that night so long ago. Then a thought occurs to me while I’m in the kitchen. Why am I letting this past event create such fear in me? My son’s symptoms aren’t like they were that night. I need to stop living in fear and live in the moment instead. I let out a deep sigh.

I can do this. Release the fear and embrace the moment. Wipe his cute little nose, suction and simply love on him. I’ve been reminded of that a-ha moment in the kitchen several times, bringing much needed calm to my heart.

I wish I could tell you fear was completely banished from my thoughts, but that wouldn’t be true. I still hold my breath when he cries inconsolably and check to make sure his nose is running clear. But like a good piece of chocolate that needs to be eaten again and again to remind you how good it is (that’s my story and I’m sticking to it), I need to be reminded to live in the present.

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5 Things I Prefer You Not Say to Me as a Woman Living With Dwarfism

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Society can be fierce. I was born with achondroplasia, the most common form of dwarfism, and learned at a very young age our society has a hidden, yet very specific set of standards outlining what or who is viewed as desirable, attractive and valid.

Because I fall into the category of “being different,” my inabilities, decisions and actions hardly make it under the radar. When targeted at the profit of others’ amusement, my heart hurts. Denial doesn’t help the situation.

By being open about how the words and actions of others make me feel, I’m fighting the good fight — educating, opening eyes, creating awareness and changing the dialogue society has about disability, disease and differences. As a woman living with dwarfism who has also undergone numerous surgeries, here are five things I would prefer you never say to me:

1. “Don’t let it bother you” or “Ignore them.”

Bottom line: It bothers me. The staring, the comments, the laughing, the pointing — it hurts. If it didn’t, I wouldn’t say anything. Most of the time, I can brush it off and remind myself it has nothing to do with me. But there are moments when I simply can’t. It gets under my skin and I feel it in my heart.

Don’t tell me that I shouldn’t let it bother me because, chances are, you’ve never felt the embarrassment of having to excuse yourself from the table at a restaurant to go into the bathroom and cry after falling victim to people outwardly being rude and inappropriate.

Yes, it happens more than it ever should. Rather than telling me it has nothing to do with me or that those people don’t matter, just allow me to feel sad and angry. I’m human, I have feelings. Trust me, I know it has nothing to do with me. I’m a strong, empowered woman who is well aware of society’s ignorance. The fact that I’m strong enough to acknowledge and feel my emotions without projecting them onto others makes me a bigger person than those who choose to make themselves feel big at another person’s expense.

 2. “You can’t.”

As an adolescent, I longed to stand up and confront those who spurned me and doubted my abilities. But I couldn’t always do it. All of the negativity slowly dimmed my light, taking my self confidence down with it. Then I read a poem by Shel Siverstein that I took to heart.

The more you tell me “no” or “you can’t,” the harder I’m going to work to prove you wrong. Not because I have to but because I want to. My height is not a measurement of my abilities. Some things may be more difficult or take a little bit longer to accomplish but nothing, in my book, is impossible. Until you have physically walked in my shoes, you don’t have the right to tell me that my dreams and aspirations are not feasible.

3. “Can I take your picture?”

Yes, this happens, too. Unless you’re part of my family, a friend or a medical professional, the answer is an absolute NO. What hurts the most is catching people taking my picture without saying a word, let alone asking permission. I’m not a fairy tale, I’m not a statistic, I’m not my diagnosis, I’m not a label, I’m not your shorty, I’m not a midget. My dwarfism is not something to laugh at or mock, let alone document for your own personal keepsake.

I’m a 29-year-old woman, and I have a heart and soul just like you. I have a big heart and I know how to use it. Yes, I am short and what I care most about is far bigger than I will ever be. So big that it can’t simply be photographed. It’s love. Love for me and for you — everyone. When we truly love, we are happy. The pursuit of happiness is a fundamental human goal, and we all play a vital role in each other’s. The next time you feel inclined to take a picture of someone who looks different, please don’t. Choose to smile, have a compassionate view of the human condition and celebrate different.

4. “Your situation is special.”

What does this even mean? No one person’s story is greater than another’s. Different, yes, but never more valid or justified. There is never a reason to discredit yourself or anyone else for what they have been through and the challenges they have overcome.

Damn straight my story is special. But guess what? So is yours. Height, race, religion, sexual orientation — I believe they don’t matter for anything in life. It’s the size of your heart, your willpower and your ​determination that help make you a better person.

Choose to use your energy in positive, productive ways to uplift, encourage and love each other. Please don’t justify your negative attitude toward my abilities by telling me that I’m special. Just don’t.

5. “You did it to blend in.”

I live my life according to my own values. I understand that we all see things differently, and I embrace the diversity that makes people individuals. In fact, I believe that diversity is what makes us beautiful. No one has any right to assume moral authority over anyone else. Never in my life would I fathom judging another person based on their decision to undergo a medical procedure that they believed would better their life. Everyone’s needs vary, and I respect that you live according to your principles.

But you also need to respect me and my decisions like the one I made when I was 12. When other girls my age were learning how to put on makeup and pick out the perfect outfit at Abercrombie & Fitch, I had made the decision, with support from family and friends, to undergo limb-lengthening procedures. Believe it or not, my motivation was not the added height — that was a plus. I know it was the right decision for me, and I have no regrets. Here’s the thing: You can’t force your beliefs on others, and no one is in any position to decide what’s right and wrong for the rest of us. So please don’t tell me that I made the wrong choice or did it in order to blend in with society. For the rest of my life, I will be a bright splash of color on society’s ideal, yet lackluster canvas.

Comments like “You can’t,” “You’re a midget,” “How could you?” and “Those people don’t matter” are inevitable for now. But I can and I will continue to stand my ground in this noble, well-intentioned battle. You can, too. The next time you find yourself forcing judgment upon another person, take a step back and imagine taking a walk in their shoes. We all have a choice. We can push someone down or we can lift them up. Choose the latter. Replace that judgment with love. It’s a cause for celebration, the beauty of difference. Join me. Put down the burden of pretense and be the person who helps someone else look forward to their tomorrow.

Kristen DeAndrade

Follow this journey on Little Legs. Big Heart.

Lead photo source: Emily Whitaker

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When a Woman at the Bus Stop Called Me the M-Word

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Being a little person, I’ve dealt with people staring, gawking and whispering things behind my back my entire life. I’ve learned to tune it out and ignore it. Most of the time if a younger child is staring, I try to smile at them and make them smile at me. If an adult is staring, I’ll smile, too, but most of the time, I’ll just ignore it completely. But when it is right in your face, it’s a little hard to ignore.

While living on my own for school in San Francisco, I’ve dealt with just a few instances of people actually talking to me. They’ve asked how old I was, how tall I was and one person even yelled, “You’re short!” at me from across a walkway once. As if I didn’t know that already!

This time was quite different. I was waiting to catch a bus back to my dorm with my roommate. We were just chatting at the bus stop when a woman came to ask us for money. We politely declined and said we didn’t have any money to spare, being poor art students. The women seemed to accept that, but then turned to me and said, “You’re small, huh? You’re one of them midgets, aren’t you?”

In the little person community, the word midget has been widely deemed as a derogatory term. Although it has been used throughout history, because of its negative connotation with a freak show, it has been deemed as offensive, since little people are obviously not freaks and are not around for other’s enjoyment.

Now, when this woman said the M-word, she was really up in my face. I’m usually not one to speak up in general, but at this point, I had no choice.

Camille Porzio the mighty.2-001

“That’s not a nice word.” I said, simply.

The woman looked surprised, and said, “Oh, well then, what do you want me to call you?” Her tone of voice sounded extremely sarcastic, and to be honest, I was unsure if she was being serious or mocking me at the time.

“The proper term is little person or little people,” I replied.

The woman then nodded and said, “OK, little person. I see. All right, well, you learn something new every day even when you’re old.” She then took my hand and said, “I’m sorry. I didn’t mean to offend you and now I know. Thank you for telling me.” While her tone still seemed sarcastic, I hoped she meant what she said when she went on her way.

At the time, I still was unsure if the woman really took away anything from our encounter, and in truth, I was pretty upset being talked down to my face. But now, I’m happy it happened, because hopefully, if that woman did take something away, I hope she told others of what happened and is ending the use of the word.

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