It's a Little Thing

Chapter Five: Shoes, Clothes, and Fashion

“People will stare. Make it worth their while.” ~Harry Winston

You’ll Never Be Beautiful

When I was a kid, I read a book that was written by a woman who was a Little Person. I got to a part where she talked about beauty, and she noted that a Little Person will never be considered beautiful. I was shattered by this statement. Unfortunately, the statement is perhaps sadly true in a world where women like Charlize Theron and Catherine Zeta Jones are the hallmarks of female beauty, it is hard for a woman who is not “statuesque” to hit the cultural markers of gorgeousness. That is not the fault of the Little Person. It is no secret that beauty expectations for all people are fairly unrealistic. Have you seen those mannequins with no heads?

How You Can Help

Whether you know someone with dwarfism or someone who meets any of the millions of qualities incorporated under the “imperfect” umbrella, make sure you bear in mind that inner beauty truly is what people will remember. It might not hurt to remind yourself of this fact from time to time as well. We all hold before us images of how we feel a perfect “me” would be. As the saying goes, strive for progress, not perfection. Perfection is unattainable. That should take a load off everyone’s shoulders.

I Wish I Could Wear Kid Shoes!

One of the most common refrains I have heard across the board in my life, regardless of the setting, is something along the lines of, “It must be great to be able to buy kids’ clothes,” or, “I love those shoes. I wish I could still by kid shoes.” It is almost as if I am being offered a consolation prize that, no pun intended, falls rather short of the mark. “I’m so sorry you are smaller than average, but at least you can wear Barbie tennis shoes!”

If wearing kid shoes is just an option you might have in order to express your fun side, I can see how that would be appealing. Stepping into a gym wearing unicorn tennis shoes could be amusing and could perhaps set the tone for a joyous workout. On the other hand, if you are a professional who news shoes appropriate for a business setting, unicorn shoes just are not going to cut the mustard.

What is it like when I try to find banal and boring “adult” shoes? II can perhaps best express a summation of the challenges by describing the place where I buy my highest quality shoes. It is a New Balance store. “What’s wrong with that?” Well, shoes in my size are not in the main store. There is a side room for children and toddlers, and that is where I have to go. Shoe displays on the girl side inevitably include red sparkly buckle shoes and unicorn boots. For a long time, Hello Kitty was my nemesis because she showed up on every pair of shoes within my size range. There have been many times when I have been getting a fitting at the same time as a toddler. To their credit, the sales people there have always been very respectful, but I think they can tell I am a little uncomfortable. I would guess they might be a little uncomfortable as well. I let them know I can tie my own shoes if they would like. Does it feel cool to try on shoes in a place where parents are buying a first pair for their infant? “Cool” is not the adjective I would use. I find it humiliating.

How You Can Help

Unless you own a shoe store, there is not much you can do for a person with dwarfism in this scenario. If you do own a shoe store or know someone who does, I would definitely make some suggestions about how a person who needs kid-sized shoes could still get their fitting on the adult side of the shop. Beyond that, please avoid the temptation to offer commentary about how cool kid shoes and kid clothes are. Adults who are striving to present themselves in a professional manner probably don’t want to hear that they look like a kid. I can only speak for myself, so I will say that I find these comments insensitive and crass. The only comparison I can think of is if you are twenty-something who is complimented on your “old man” shoes or something like that. That comment, however, would be more about style and less about the actual person. That is the dividing line between offensive and rude, I suppose.

Determined to Change the Narrative (from ItActuallyFits.com)

I have been fortunate in my social media explorations to happen upon a very unique store called It Actually Fits. On the website’s homepage, founder Lisa notes that 11,000 women currently have no clothing that actually fits them. How is that possible?

Most people will probably get an image of something akin to a little kid playing dress-up. You are not far wrong. Pants I try on sometimes extent six-12 inches BEYOND where my toes are. Dresses not only extent well beyond my feet, but the top also seldom works. Shoulders might be down at my elbows. The cut of the dress front would result in me appearing in a rather shocking manner as the collar sits below where my bra ends. The waistline might be more of a knee line. You get the point.

Why not just shop in the kids section and be quiet about it already? Well, here is the thing about clothing for girls (I cannot speak for boy clothes). When girls are around 10 years old, they do not have hips. They do not have a waist. They do not have boobs. Things happen to the female body as you develop, and pants cut for a 12-year-old might fit my legs, but i’ll never know because I can’t get them above my thighs. Again, this look is not one I would want to try in public. Yes, it is true that occasionally a larger size in the kids section may fit (barely), and it is true that kid clothing is often less expensive than adult clothing.

Lisa of It Actually Fits started her amazing service because she thought maybe women with dwarfism might want to look not just professional, but actually tailored and comfortable. She custom-makes clothing based on measurements that are sent to her. There is no surprise when these clothes “actually fit.”

How You Can Help

The advice here is much the same as the advice offered for the shoe scenario. Please avoid comments like, “I bet it’s nice to be able to shop in the kids section.” Hint: It’s not. Also, consider avoiding well-intentioned advice like “get a tailor” or “why don’t you just make your own clothes?” Granted, there are people who can and do make their own clothing. This entails costs of different kinds. How much does fabric cost? How much does a really good sewing machine cost? Perhaps more to the point, do you know how to sew? Sadly, this is not a talent that is a genetic side effect of dwarfism. Just because I am small, I do not know how to make my own clothes, nor do I really have the time. Do you make your own clothes? It is not an easy fix, and tailors are expensive. The best bet is to keep an eye out for professional clothing that your friend or family member may have a shot at, and offer support with simple humanity.

How We Are Written Out of Fashion

One out-of-the-box idea I was ready to try were the box platforms like Stitch Fix. I figured if the whole point of the business was to customize clothing, it could be a really big difference-maker. I logged into that and a few other sites. I was shocked to discover that none of them offered sizes that would fit me well. It was assumed that “petite” meant that you had all of the “correct” measurements. There was not a way I saw to manipulate the size charts to find something that would be worth my while. In other words, ‘Petite” did not just mean you were of small height, it also meant that you had a size zero waist. The fashion industry simply does not understand or care that there are some people out there who may be the height of a child but who is not stick straight like a child. This concept clearly does not compute.

I am certainly not the first person to point out how grotesquely out of touch the fashion industry can be, and i will not be the last. However, I will say that fashion mavens need to be educated about people with dwarfism. People with Achondroplasia have even harder times because their legs are shorter. Some people with dwarfism may have very small arms and shoulders, or there may be some asymmetry in the body. This is a common symptom of Russell-Silver Syndrome, but it is one i avoided somehow. People can be petite but not thin. People can be tall and not thin, too. I am not actually sure who most clothing caters to, but I don’t think I have met them.

If you want to learn more about the intersection of dwarfism, disability, and fashion, I suggest you look up Sinead Burke, who has been an outspoken advocate for better treatment from the fashion industry for those who are disabled. Slowly but surely, people with dwarfism, like Lisa, are rewriting the areas we have been written out of.

CHAPTER FOUR: Helping Can Be Hard

by Margie Clayman

“Our prime purpose in this life is to help others. And if you can’t help them, at least don’t hurt them.” ~Dalai Lama

Imagine this scenario: you are in a grocery store, in the produce section. You see a person with dwarfism looking up at the top shelf and trying to reach something up there (eggplants are usually near the top for some reason, so we will say they are trying to reach an eggplant or two). Do you have a moment of hesitation before approaching to see if you can help? Do you offer to help at all, or do you just keep walking? Alternatively, do you have no idea why I would even ask those questions?

This is not a time to self-judge. It’s about your blink reaction. Hang on to your answer.

Trying to Give Help

If you have that moment of hesitation, or if you keep walking, what are possible reasons why? I would guess some of the following:

Fear that you will come across as condescending, ignorant, or ableist
Fear that you will not verbalize your offer to help in an effective manner
Maybe the person will bite your head off
Maybe you are even worried that if you help grab that eggplant, you’ll be obligated to follow the person around and help them grab other things, too

Perhaps you have been in such a scenario, decided to offer your assistance, and even though the person was obviously struggling, they shrugged off your offer and said something like, “I got it. Thanks.” Once you get a reaction like this, I would imagine it would tamp down your future motivation to offer help in similar situations.

Let’s talk about why it can be so difficult to help someone with dwarfism.

Trying to Get Help

There are several reasons why, speaking for myself of course because I can’t speak for everyone or anyone, may hesitate in accepting help. Here are a few common ones.

I like to come across, as all humans do, as “normal.” Sure, scaling a shelf might not epitomize normal, but I am still reaching what I want on my own with no assistance. There is a slight sense of empowerment there that getting help can diminish.
I don’t like to feel obligated. Perhaps it’s my midwestern sensibility, but if someone goes out of their way to help me, even if it’s just reaching something for me, I feel like it is a debt I can’t pay back. There is not going to be a scenario later where I can reach up for something and grab it for them, for example. Explaining why what they did was such an extraordinary help also seems a bit awkward for just a small act of assistance. No one wants to hear your life story when they hand you that eggplant.
I’ve been burned when I have asked for help before.

You read that last bullet point correctly. There have been times when I have asked for help and immediately regretted it. While I don’t know how common this is for people with any kind of disability, I would guess it is more common than it should be. Let’s look at a couple of examples.

“Cut their heads off.”

When I was in high school, I had to take Algebra II. I did not really understand why I HAD to take Algebra II because I certainly had not enjoyed Algebra I, but so it goes. I don’t remember how the seating was assigned in the classroom, but I was nearly at the back of the room. As you might imagine, it was hard for me to see the blackboard (perhaps dating myself here) over the heads of my fellow students. Despite the risk of feeling even more self-conscious than I normally did in high school, I decided to take the teacher aside after class one day. “Can I move my seat more to the front? I can’t see very well over everyone’s heads.”

“Just cut their heads off,” he replied. And then he walked away. End of conversation.

I was rather taken aback. This happened some thirty years ago and it is still as fresh in my mind as if it had happened yesterday. Teachers, one thinks, are there to assist. Not only had I been dismissed, I had been dismissed in a rather crass and gratuitously mean way. Why would I expect better from someone not in a position to help me out?

The Grocery Store Experience

Going to the grocery store is one of my least favorite household tasks. Inevitably, at least 25% of what I need is on the highest possible shelf. This might be ice cream, it might be those tiny glass jars of artichokes, or it might be that eggplant I mentioned at the start of this chapter. When people ask me why I don’t ask for help and instead try to mountain climb my way up the freezer, I tell them a few of the comments or responses I’ve gotten in these situations.

“Good job looking up that high!”
“I’m so glad I’m actually taller than someone”
“I bet you hurt your neck looking up there”

The worst experience i have ever had in a grocery store happened in the produce aisle. No, I was not trying to get an eggplant. I actually was reaching for a produce bag, which for some reason that I never have understood has to hang practically from the ceiling. I was reaching when a man approached to my right and said, “Oh you’ve got to be kidding me.” He pulled off a bag and handed it to me, and then he pulled another one and handed it to me. “I only need one,” I said. In rather a menacing tone that is hard to describe he said, “You’ll just end up asking me for another one anyway.”

I legitimately felt threatened, and I asked to be escorted to my car when I was done because I was so scared. This in turn got me many smirks and chortles from the store staff.

The Downside of Not Accepting Help

It’s all well and good to say, “Do me a favor and DO NOT help me.” However, in my mind this has at times devolved into shooting myself in the foot. I’ll give you an example.

When I was in high school, my parents told me that there were scholarships available for people with dwarfism. Maybe I should apply for one. Being in high school I of course did not consider the potential savings that might have given to my parents. I mean, when you’re in high school it’s pretty much about you and yourself. However, I flat out refused to even research the concept. I did not want to touch that kind of scholarship with a ten-foot pole. Why?

Well, there were a couple of reasons. First, it was back to the being self-conscious aspect of having dwarfism. Did I want to go to the awards ceremony at the end of the year and have it announced that I had won a scholarship from Little People of America? I could already hear the snorts and chuckling. The stronger reason, however, was that I wanted no special treatment. Somehow I had gotten it into my head and heart that if I was going to do anything good, I wanted to do it from my own strengths and efforts. I wanted nothing that I would perceive as pity or charity.

Sometimes people with dwarfism, or even just people who are bit shorter than average, are told they have “Napoleon syndrome” if they have an attitude like this. I never had a desire to conquer anybody, but I wanted to achieve as if I was on a level playing field even though I wasn’t. If I was hiking with my Girl Scout troop, I would trample up and down the same hills. I would do all of the same trail building activities, from cutting down trees to using a pulaski to clear roots. What did this get me? Extra sore arms, the occasional sprained ankle, and various other injuries. However, my pride was untarnished. I did not accept any special help. I did not want it. I hated the idea.

A person offering me assistance has to deal with all of my internal dialogue before I can even get to their external offer to help.

How You Can Help

This chapter has been all about the issue of help, and I’ve spent most of the time explaining why you might hesitate to give help to a person with dwarfism and why a person with dwarfism might hesitate to receive it. So, what am I saying here? Should you just walk on by when you see anyone with a disability having a hard time? Of course, the answer is no!

If you see a man or a woman with their arms full and you reach the door first, won’t you hold it open for them? I hope so (although not everyone has attained this skill). You are not likely making a statement with this gesture. It’s common courtesy. My best advice when trying to approach someone with dwarfism is to have that exact same frame of mind. You do not need to provide a preamble about how you have a relative who is also small. You do not need to make any commentary on what I am reaching for or how pleased you are that you can reach something I can’t. All you have to do is say, “Hey, can I help you get something?” I will most likely say with gratitude that you sure can. The only time I might abstain is if I already pretty much have it in my hand. I say thank you. You say no problem. That’s it.

As for bigger issues, like if you know a young person who might be able to benefit from a scholarship specific to their disability, you really have to feel that out based on the individual. I’ve explained what my thinking was back when I was 17 or 18, but not everyone will feel that way. Other people may even be more vehemently against such suggestions. My best advice in these cases is to present the opportunity as assistance, not as a charitable gift or a sign of pity. Maybe you can try to make it utilitarian. “You’ll need adaptations for your car and help with college will leave more money for that expense.”

Unfortunately, the cliche about leading a horse to water but not being able to make it drink applies here. I suppose you could force the issue, but I would imagine that would create a huge sense of resentment on the part of the person you are trying to help.

Above all things, as you would hopefully be with anyone, just be decent as a fellow human being. Nine times out of ten, that will be enough to make me happy and filled with gratitude.

Chapter Three: The Driving Conundrum

by Margie Clayman

CHAPTER THREE: The Driving Conundrum

“You can’t just make me different and then leave” ~John Green, Looking for Alaska

Baseball, Apple Pie, and Driving

There are a few things the average American teen expects from the high school experience. These may vary based on what movies said American teen has watched. As a proud member of Generation X, I grew up with movies like Heathers and Pump Up the Volume, so my expectations may have been slightly darker and much more focused on Christian Slater.

Most teens expect to have way too much homework and to feel very put-upon by said workload. They expect to have a job, probably. If they’re athletic, they expect to have a busy sports schedule and lots of practices and training. But perhaps the most universal expectation for high schoolers is that as soon as they turn 16 or (15.5 as the case seems to be now), literally the moment they blow out the candles, they learn how to drive. This is the great passing of the torch, the rite of passage. Once you learn how to drive, you can do anything.You are practically an adult, and you don’t know that you don’t want to be an adult.

I certainly had these expectations when I started high school. Of course I did. We all take some things for granted. I’ll learn how to drive, I’ll get married, I’ll have a horrifying 1.5 kids. I was a year younger than everyone because I started school when I was four instead of five (September baby for the win), so I was already raring to go. I started sitting in the driver’s seat in my parents’ cars just to get a feel for it. But this resulted in an unpleasant, if unsurprising, revelation. I could not reach the pedals and I could not see over the windshield. One of these at a minimum is necessary and generally speaking, one hopes to be able to do both.

Driving School

After realizing how far I was from being able to utilize the family cars, I completely skipped the concept of joining my classmates in the standard high school driving classes. I assumed that the driving lessons the high school offered would not be accessible to me because the car has to be as universally accessible as possible. Even if I had called, and let’s say even if I had gotten a chance to participate, I would have found the accessories of my accessibility (pedal extenders, pillows, books) humiliating. High school is a tough time to be really different from everyone else.

Given this, my parents suggested I call a local driving company and see what accommodations they could offer, so I did. The woman who answered the phone for the first company I called said, “Well, gosh, I don’t know. We have some phone books you could sit on.”

To me, this response seemed bereft of compassion and of humanity. It felt like I was being mocked by a stranger who hadn’t even looked at me. The mere concept of my needing help to drive was almost laughable. I felt hurt and hopeless.

The conundrum had arrived. I would need to get a car outfitted for me so that I could learn how to drive, but how could I get a car to drive before I knew how to drive? Worse, how could I afford both a car and the special accessories I was sure I would need as a definitely not wealthy 15-year-old?

How You Can Help

A lot has changed since I was in high school, so hopefully accessibility in driving has improved. I just looked up the driving school my high school offers and there is nothing about the vehicle at all, so perhaps not much has changed. If you have a child or a friend who is not what society deems “normal” for whatever reason, encourage them to talk to the person in charge and fight for accessibility. If they do not want to do this, do not judge. It is tiring having to fight for everything that seems obvious to you, and, like I said, accentuating differences in high school is often the stuff of later stress dreams. If the “normal” driver’s ed isn’t an option help the person find specialized trainers who will be properly equipped and compassionate.

A key facet of living with dwarfism or any other kind of “difference” is that you are given a choice, and I say this with delicacy and care. You can live as a constant victim because your life is not fair, or you can live as an advocate and fight for yourself.

This might sound like victim-blaming, but I do not intend it as such. It is justifiable to feel victimized when the entire world around you is not built for you. It most certainly is not fair. But you have to come to a point, or at least I have thought so, when you decide to make the world meet your needs insofar as is possible. You cannot just sit back and cry, because while that might purge the feelings it actually does not fix anything. It only makes you feel worse. The me of today would have reached out to many people in order to help myself learn how to drive. I was blessed with parents who did this for me and it has saved my life in many ways.

That Feeling of Dependence.

This driving conundrum stuck to me like glue until long after both college and grad school. I could not figure out how to untie the Gordian knot. Car first or drive first? How to drive first? How to get car first if can’t drive? Over and over again this circular enigma rattled my brain.

Throughout college and graduate school, I was entirely dependent on family and friends to get me where I needed to go. This once again contributed to my feelings of having no control over my own life. If someone was not available, I was out of luck. If out-of-state friends were coming back to Ohio but were within an hour of where I lived, I would not be able to see them most of the time. Still feeling like I was the center of the universe, I would feel very hurt that people would fail to travel two hours round trip to see me, so the bad feelings and the sentiment that I would never truly fit in anywhere unjustifiably continued. I did not know how much two hours of drive time was. It seemed easy enough in the passenger seat. Admittedly, perhaps my drama queen behavior continued on into my early twenties.

After graduate school, I moved back home and began the journey of finding a job. My college loans would need to have payments made within six months of me leaving school, which translated into me needing my dream job within six months–or so I thought. Dream job or not, I knew I would need to be able to get myself where I needed to go. I could no longer ask my friends and family to cart me around. I felt more than a little bit hopeless.

Wally Snyder, the Angel I Needed

One day, things began to look up. My mom mentioned that she had done some research, and in that magical way only moms can explain, she had found a driving instructor who specialized in teaching people how to drive who might not otherwise have a way to learn. His name was Wally Snyder, and while driving instructors may not often be associated with heroism, he remains one of my greatest heroes to this day.

Wally settled the car conundrum because he knew how to adapt his car for “different” drivers. I believe he had a stack of books and some pillows that I sat on. Wally was enormously patient, gentle, and calming. He had the innate gift of being able to tell what I was going to do before I did it, so if I was going to pull out too early or turn the wrong way, he would simply say, “mm mm,” and I would regroup. Wally spent an entire summer training me to pass the dreaded maneuverability test. Between my nervousness, my spatial awareness issues, and simply being a new driver, orange cones quickly became my nemesis.

One particular incident really showcases Wally’s remarkable empathy. After a particularly challenging lesson, I broke down into frustrated tears. I felt humiliated and tried to explain I was just really feeling the pressure to get this right. Wally’s patient demeanor never faltered through it all. I can’t remember what he said, but I remember feeling heard and understood. I was not ashamed to show up for my next lesson with him.

At long last, at the age of 25, I passed the written test, the driving test (on the second try), and the maneuverability test. I will never forget Wally Snyder’s role in my life and the fact that it was my mom who found him. Everybody could use a Wally Snyder.

Why I Hate Cars

I know there are many people who are passionately in love with their car or all cars. I have never liked cars. To me they have always been uncomfortable and scary. Yes, even with adaptive equipment.

Let’s start by discussing pedal extenders. These present a unique challenge for several reasons. First, most car dealerships are exceedingly uncomfortable adding or taking away anything from a car. In fact, the dealership where I bought my current car wouldn’t even add something to the trunk so that it would be easier for me to close. If you or someone you know needs pedal extensions, you most likely will need to find a uniquely certified company that specializes in this kind of work.

How You Can Help

This issue of car dealerships and liability is a significant problem for disabled drivers. I was shocked that my dealership would not add a hook or something to the trunk of my car so I could reach it when it was open. It’s not like I drive through the trunk. If you are someone handy with cars or if you know someone, take some time to hook up the disabled person in your life with some help. Make sure nothing dangerous is added, of course, but within reason, we need all the help we can get.

Pedal extenders make it virtually impossible for any other person to drive your car, so sharing driving responsibilities on a road trip is not really an option. Pedal extenders also add a lot of extra weight to the pedals. This means it’s very easy to go too fast, and it’s very easy to press on the brake too hard and come to a lurching stop. It takes a while to get used to. I also found that the pedal extenders would feel very slippery when wet, which was certainly disconcerting.

But even with the pedal extenders, I was not fully equipped to drive. I also had to have the seat all the way forward and I had to sit on something to bump me up higher. To drive my first car, I sat on a short stack of books and a pillow. Getting everything just right took a long time, and in order to see and reach the pedals, my stomach was pressed right into the steering wheel. I was fully aware, as all shorter-than-average people should be, that the airbag could easily break my neck if I got in an accident. Needless to say, driving was freeing in some ways but utterly horrifying in others.

The Size of a Child

For people with dwarfism, driving is inherently dangerous. All you really need to do to prove this is to Google “child seat guidelines”, most of which state that children should remain in a car seat until they are four feet nine inches. As a person who is a fully grown adult at four feet five inches, this is not workable for me.

This also points to many of the issues people who are smaller than average deal with in the driver’s seat. For example, I can flip the sun visor around all I want, but that doesn’t change the fact that it is designed to help someone whose head is at the headrest of the seat. Since I and others with dwarfism are too small for the sun visor to help, we are going to suffer a lot more from sun glare, especially in the winter. Even the best sunglasses can only do so much to help with this.

Seatbelts are another factor. The driver’s seatbelt is supposed to pass over the shoulder, a nice bony area that is very protected. The seatbelt comes closer to the neck on shorter-than-average people like me. Another fun thing I learned when I first started driving is that in a car accident with enough force, a seatbelt in that position can actually behead the driver. Obviously, this is not safe. Most cars simply do not possess a feasible workaround.

The Humiliation of Car Shopping

I have now been driving for close to ten years and have purchased two different cars. The first car buying experience was not too bad because I knew how to make a specific brand of car, the Toyota Camry, usable. I simply looked for that brand and went in that direction.Well, I got a Corolla, actually, but close enough. Frustratingly, more recent iterations of that model started to use bucket seats, which make it essentially not viable for me. On my second journey to buy a new car, II had the rather humiliating experience of carrying a pillow around and “trying on” numerous cars with the salesman who was helping me. He is another hero of mine. He was immensely patient as I explained that I was not quite comfortable, or that the curvature of the windshield made it harder for me to see. If you have never walked around a car dealership’s lot with a pillow in tow, well, you are lucky.

While my experience buying my current car–a Honda Fit–went about as well as it could have, even this vehicle is less than ideal. I don’t need pedal extensions in this model, but I do still need to sit on a pillow, and I am situated dangerously close to the steering wheel. I cannot see as well as you are supposed to over the windshield so I often miss curbs (or rather, I often hit curbs). However, for me it is as safe as I can hope for.

The Tip of the Iceberg

As extensive as all this seems, others with dwarfism need even more far-reaching accommodations to drive. Because I am on the taller end of the spectrum, I can get by with pedal extensions and sitting on a pillow. But many with Achondroplasia are smaller than I am, with a shorter reach both via the arms and legs. Their needs are greater than mine. Their cars sometimes need to be outfitted with hand controls instead of just pedal extenders and pillows. Many people need a special step to help them get in and out of their vehicles. Trunks are beyond inaccessible.

Driving gives us a great sense of freedom. There’s a seemingly throwaway line in the movie Mermaids that has always stuck out to me: “With a car, you have the freedom to go anywhere.”You can go to a party, and then when you realize the party is boring, you can just leave, Everybody deserves to have access to that kind of freedom. Hopefully, the auto industry will one day cater to someone who is not a 5’10 man. There are a lot of people in that category who find driving a little more difficult than it really should be.

How You Can Help

If you know someone who can’t drive, try to avoid being judgmental until you know all the facts. I am sure people came to resent my need to be driven everywhere even though they loved me. It’s a pain to be sure. But if the person you know is like me, they don’t like it any more than you do. They want control of their lives, and independence. Here’s to hoping we get there some day.

Chapter Two: The Matter of a Ruler

by Margie Clayman

CHAPTER TWO: It’s a Matter of a Ruler

“Absolute size by itself is no indicator of success and achievement, let alone of managerial competence. Being the right size is.” Peter Drucker

Just A Foot

Do you have a ruler nearby? It can be any kind of ruler. Even a tape measure will do the trick. Go ahead and look for one. I will wait here.

Got it? OK. Now, if you do the quickest of searches, you are likely to find that the average height for an American woman this year is 5’4. I am 4’5, which means I am just under a foot smaller than the average woman. Does that sound like a lot? Take a look at that ruler in your hand, or mark 12 inches on whatever measuring device you found. That does not seem like a lot, right? You can hold it between your two hands. A 12-inch ruler can fit inside most small desk or kitchen drawers. When you look at a ruler, it seems crazy that I would write a whole book just because that is the difference that separates me from the average woman. However, here we are.

Now, do me a favor and stand up for a second. Put the top of the ruler at the top of your head and measure whatever the difference is between your height and 4’5. Is it more than a foot? Most likely. Where does the bottom of your ruler or tape measure land? That is where my head would be if I was standing next to you. So, where is that? Perhaps my head would be at your shoulder level. Maybe I would be at your chest. Maybe I’d only be up to your waist. Maybe this is reminiscent of one of your kids at this point.

Here is the really tricky question. You don’t need the ruler for this one. If you were walking with someone who was that height, or if you were asked to pose for a picture at a professional function or at a party, would you feel uncomfortable? Would you feel awkward either on your behalf or on mine? If you are self-conscious because you feel you are too tall (whatever that means), would standing next to someone like me create bad feelings for you?

How You Can Help

There have been a few times in my life when someone has pointedly asked me not to stand beside them or walk beside them because it makes them feel too tall. It makes them self-conscious. Of course, when you are used to being bullied you assume this is a comment about you and your differences, but what you come to realize is that it’s about the person who says those words. Nonetheless, asking a friend not to stand or walk near you is deeply hurtful. Do not let such a surface trait impact your friendship. Love being with your friend for who they are, and let other people think or say what they will – about both of you.

What a Difference 12 Inches Makes

How does this difference of a ruler translate into the real world? You might be surprised. If you want a slight feel, get down on your knees for a second and see how your perspective shifts. If you have a child who is around 12 years old, note what they have access to and what they struggle with. Among the things that are out of reach for me are:

The top shelf at grocery stores
High-hanging mirrors at many public restrooms (it is somewhat creepy to look up in a mirror and see no reflection)
The bottom of my top-loading washing machine
The top of a butcher or deli counter
The window at a drive-through restaurant (I can’t reach from my car to the window without opening my door)
Many fitness machines, especially spin bikes
My own kitchen cabinets

These are inconveniences and when you are a person with dwarfism, you learn for the most part to get by. At tall counters I go around the side to get someone’s attention. I use a grabbing device to help me reach top shelves at stores. It’s inconvenient, and, of course, climbing shelves or using a long tool to reach something does not help you feel LESS self-conscious.

How You Can Help

I’ve gotten a wide variety of reactions when trying to reach something at a grocery store. One woman complimented me on seeing something so high up when I asked if she could reach it for me. Often a person will help and comment about how I remind them of their tiny aunt or grandmother or wife. One time I was mocked and felt very threatened, just because I asked for help. If you see a small person scaling the shelves or using something to reach a top-shelf item, make their day. Offer to get it for them without comment or judgment. It’s just that simple.

The Blink Reaction

Perhaps the biggest problem I deal with as someone who is smaller than the average person is, sadly, other people. Obviously, people can’t know all of the difficulties inherent in being a ruler smaller when they first look at you. What they react to is what Malcolm Gladwell calls the blink effect. They see me and their brain seems to go into autopilot., “Small.” Small = kid. Small = different. The trouble with being on brain autopilot is that often means your mouth is on autopilot as well. I have been embarrassed many times because peoples’ blink reactions came out of their mouths. One of the most memorable moments occurred when I was in high school, a time very few people have reached the apex of their self-esteem.

I was out on a trip with my speech team. I believe we were headed to the state tournament, as a matter of fact. We had dropped off everything at our hotel and were out to eat dinner. We were standing there all together waiting to be seated, and then it happened. The hostess asked if we’d be needing a kids’ menu. I didn’t even have time to let my face get hot or to have that ever so commonly expressed teen feeling that I was melting into the floor. The tears came hard and fast. I was embarrassed, I was self-conscious, and I had fallen from feeling like kind of a badass at a state tournament to feeling like the same ole smaller than average person I always was. In this particular case, the hostess apologized and apparently she, too, had a good cry because she felt so badly.

Children represent another story. One does not expect them to have the social cues of a fully developed person. I can’t tell you how many times I’ve walked into a store or by a toddler in a cart only to hear, “Look Mom! Look! A midget!” Or, “Why is she so small?” In these cases, I do not fault the child. However, I pay attention to how the parent reacts in these moments. I depend on adults to act like adults, and that means teaching children that pointing or loudly commenting on someone for whatever reason is not good manners. It’s rude, in fact. Occasionally I will hear a parent admonish their child, but actually this is quite rare. More often, the parent is merely silent. Perhaps they are embarrassed by their child’s behavior, and that is great, but the opportunity must be taken advantage of and used as a time to teach.

How You Can Help

My friends who are parents often ask how I would like for parents to react if their child points or otherwise makes insensitive comments. I am not a parent so I always feel odd offering parenting advice, but I can tell you what makes me happy. If a child has been pointing or asking questions, I like for parents to use the opportunity as a teaching moment. “That is rude.” “It is rude to point at people.” “Everybody looks different. It’s not a big deal.” Anything like that makes me know that you are raising your children to be more sensitive and caring.

Bullying

Finally, of course, there are people who just are cruel, or bored, or acutely insecure about themselves. I have often been followed by taunts of “midget” in a myriad of environments, from a street in a public area to a store to a hall in grad school. When I am with someone while I am being bullied in this way, they too often remain silent. Confrontation is not a pleasant thing, and who wants to go up against a bunch of people? Better just to let it pass. That is understandable, but I would ask you, if you find yourself in such a scenario, to offer quiet comfort to the person you’re with who is being bullied. Grab their hand or put your hand on their shoulder. Ask if they are okay afterward. This goes a long way toward cleansing the palette.

More than any other facet of being a ruler shorter than the average woman, the cruelty of people is certainly the most dangerous and the most damaging. It is true that one can feel self-conscious in certain scenarios, but that self-consciousness rests on a foundation of past bullying. If you’ve never been mocked, it doesn’t occur to you that anyone would even pay attention to what you’re doing. When you are a person with dwarfism, it can feel like there is always a spotlight on you, and you are definitely not feeling butterflies like it’s your big stage debut. You worry that everything about you is attracting negative attention. Do I look too small? Does my purse make me look smaller? What will people think when I have to climb this shelf to reach my favorite cereal? These feelings of anxiety are perpetuated every time someone decides to comment, even if it is a relatively neutral or even positive comment. You are under a microscope wherever you go.

All of that self-consciousness, shielding yourself from harm, worried about what you might face this time…all because of the distance that exists between 5’4 and 4’5. It seems crazy, doesn’t it? However, this is how it is every day for people who are “different” from the norm.

Chapter One: A Gap in the Line

by Margie Clayman

“Always remember that you are absolutely unique. Just like everyone else.” – Margaret Mead

Realizing You Are Different

Self-awareness is not a given in any individual, and, perhaps, is not expected in young children. Realizing how you fit into the context of your family, your neighborhood, your school community, and more can take a lot of time, and it is not always a smooth process. For some young people, the path into the rest of their community is reasonably easy and seamless. For others, the road is slightly more laden with obstacles.

I was not born knowing that I was “different.” I was not aware that there was anything particularly unusual about me. Indeed, my family served me nothing but love and glorious compliments. Relatives who came to visit would say, “Look how she’s growing! Put a book on that girl’s head!”

For me, the moment of realization was not necessarily dramatic. The pivotal moment for me was in a reflection I saw in floor-to-ceiling windows at my school. My classmates and I were marching in single file (of course) to an assembly of some sort, and we had to walk by these windows to get where we were going. I must have walked that path countless times. This time, however, something was different. I noticed that the line was fairly consistent in nature for the most part. Heads were lined up with each other at the same height, approximately. All of the heads were lined up, that is, except for mine. Where I stood there was a noticeable collapse. A decline. A downfall. I created a gap in this homogenous line. In that single moment, with no word to let anyone know anything, everything about my physical reality became weird and bothersome. Why was I not the same? Did the other kids notice that I was not the same height as them?

So far as I knew, this was something I had noticed that had escaped the attention of others. I was disabused of that notion when I was in Kindergarten. Everyone was out at recess. I don’t know what I was doing at the time. I was never particularly good at recess. A couple of older boys were swinging on the swingset, and all of a sudden they started yelling out, “Look, look, a midget!”

I remember very distinctly looking around excitedly at first. My mother is an avid birdwatcher, and “midget” sounded like a type of bird I had never heard of. Why else would someone be so excited? Then I realized they were laughing…and pointing at me. Suddenly I knew that this word “midget” was bad, or at least it was tied to bad for me.

I don’t recall how I learned what “midget” meant. I don’t even remember if I told my parents about this life-changing event. However, this solidified the narrative I had started in my own head. I was different, and the other kids knew I was different. Moreover, other kids thought that I looked funny, or that my being different was funny.

What you can do to help

Kids can be cruel as we all know. That does not mean that unkind words should go unnoticed. If you see children maltreating another child or even another adult (Yes, this happens), use the opportunity to teach them that their behavior is not appropriate. If they are not taught when they are children, they will simply grow into ignorant adults. If you have a good relationship with the child who is being bullied, make sure they are okay. Take them aside and show them support. Give them a chance to talk about what happened. Let them know it is okay to feel hurt. Help them move on.

Size Matters, Right?

I suppose for me this began a long period of body dysmorphia. I was both intrigued and horrified at how I could be so different and yet so similar. However, I also was made to feel my small size when I was in early elementary school. People would pick me up because they could. Sometimes it was well-meaning and sometimes not, but I knew right away I did not like that feeling of being moved by someone else and feeling trapped. I knew that other kids were not picked up this way. It made me feel something other than small. Now I felt that my height made me powerless.

I would love to say something grand like, “When I turned 18 I turned all of this on its head and never looked back.” The fact is, however, that when you are “different,” however that may be defined, it’s hard to forget. Society does not let you forget. My eyes did not let me forget. When my parents would want to show me pictures or video of me in school concerts I would refuse to look. That image of everyone looking pretty much the same on the risers, and then that big gap, was my enemy. Being “different” never seemed like a gift to me. It was something to be embarrassed about.

Navigating these feelings as a child or a teen is intensely difficult because you don’t have all of the knowledge and tools you need to even understand what it is you’re feeling or thinking. I had no idea what body dysmorphia was when I was 7. In fifth grade, when I would walk down the hall and people would hunch down and laugh as I passed by, I did not know all of the big feelings I was having. I just somehow knew that I was wrong. I was off. I was not an object of pity or admiration. I was a person to be mocked. The impact this has on one’s self-esteem is difficult to measure. For me, I decided when I was in eighth grade that I would make everyone remember me for something great. I wanted to make the top ten in my high school graduation class from that moment on. If I couldn’t make valedictorian that was okay. I just wanted my name called and to hear applause.

What You Can Do To Help

If you know a child who has dwarfism, there are a few things you can do if you are in a position to do so. First, try to find other kids like them. It took me well into my 40s to start finding people like me online, but the feeling was a deep sense of connection and an end of isolation. Little People of America has numerous resources, but I have never really felt at home there. Some childrens’ hospitals have specialists who treat achondroplasia, and they may be able to connect you with clubs or summer camps. Worst case scenario? Connect your child to motivational people online who have dwarfism. That is an option I did not have as a child.

Other children and teens may not have this “I’ll show them” response at hand. As we know all too well these days, victims of bullying sometimes translate that anger and hurt into violence against themselves or others. Some turn to drugs or alcohol early on. For children who do not have fully supportive and loving families, dealing with this kind of onslaught on your very nature would, of course, be that much more complex.

That is not to say that the “I’ll show them” tactic is solid gold. My desire to “prove them wrong” or “make them remember me with applause” became a consistent and nearly all-consuming goal. In situation after situation, my goal has been to be the best. I became convinced in that moment of goal setting that me as myself was not quite good enough. That seemed clear. When you are bullied or ignored and nothing in between, you easily translate that into a lack of your own worth instead of problems with the folks doing the mocking. I began at that young age to place my value in my actions and accomplishments.If I wasn’t standing out in a good way, I’d only stand out in a bad way.

I do not think I am alone in this regard. Many celebrities with dwarfism have tragically taken their own lives or have suffered with serious drug/alcohol addictions. I think it is because no matter how successful you are, you still know that you look different. You ARE different. You are treated differently. In this society, “different” iis not treasured. It is made to feel like a curse to those who stand out. People of “different” skin colors, or people who have significant physical issues, or people like me who are merely smaller than usual, cannot apply any fixes to make those differences go away. You have to make peace with the gap or it will eat you.

It's a Little Thing

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