Category: FAQs

a web page which made this clear. So I politely said: your curiosity which inspired the question is what prompted me to write my memoir. The best way for you to find out what it’s like to be little is to read one or more of the books in my dwarfism trilogy. I put the onus back on the questioner to find out what it’s like.

Typically I see my days playing out as for a person of any size. That’s because my environment has been modified so that I can function independently and interact with people who are accustomed to seeing me. I can reach almost everything in my custom built home, drive  a modified vehicle, and mostly go to places where people know me.

But this month has been totally different. For three weeks in March my husband Robert has been in the Emergency Room, Intensive and Progressive Care Hospital Units, and an Acute Care Rehabilitation Hospital. This experience has reminded me that being little is distinctive.

It starts in the parking lot where I drive the entire lot looking for a disabled space with an access aisle on which to lower the ramp of my Wheelchair Accessible Van. It continues when I proffer my photo ID card to hospital security and need help to get it scanned. Speaking up when someone jumps the line can cause an angry response. And ICU visitor access is delayed while I find someone to reach the wall phone to request entry.

Communicating with medical personnel is challenging when they stand too close and talk over the top of me. I had to ask the ICU critical care doctor pressing me for consent to intubate Robert to talk to me face to face. He willingly came down to my level—first by crouching and then by sitting on a chair.

Watching Robert in a hospital bed that could not be lowered enough for me to greet him with a kiss or help feed him his meals was frustrating for both of us. But in the rehabilitation unit they located a bed that lowers enough for me to sit on the bed and reach Robert.

Successful people with dwarfism are adept at requesting accommodations that level the playing field and advocating for acceptance and environmental changes.

For further information go to:

• Angela Muir Van Etten Goodreads Author page. https://www.goodreads.com/author/show/1705018
• Angela Muir Van Etten website for books, blog posts, and resources. https://angelamuirvanetten.com
• Angela Muir Van Etten FAQ blog posts. https://angelamuirvanetten.com/category/faqs/

In the 35 years between now and then, I lost two inches—height I can’t afford to lose by the way! Age is the culprit for this loss from increased curvature in my spine and shrinkage in the discs that cushion the vertebrae. In the 16 years between my marriage to Robert and his hip replacement surgery, he gained an inch (2.54 cm). I married him for richer or poorer, better or worse, but who knew it would be for shorter or taller?

Some people find it hard to believe someone could be so short. Take, for example, the night a Florida traffic cop pulled Robert over for speeding. Robert willingly turned over his driver’s license to the officer, but was puzzled when he shined his flashlight backwards and forwards between him and the license. Then the officer asked Robert, “how tall are you?” When he said, “three-feet-six,” the officer retorted, “that’s not what it says here.” And the officer was right. The license recorded Robert’s height as six-feet-three! Apparently, a driver’s license bureau clerk didn’t believe a driver could be three-feet-six and flipped the numbers.

A clerk at the New Zealand (NZ) Department of Internal Affairs (comparable to the United States State Department) had the same problem. I applied for a passport and showed my height as 1.08 meters. The clerk perceived an error and called to query the height. At first, I agreed there might be a mistake. (It was about the time of NZ’s conversion to metrics and I wasn’t confident my conversion was accurate.) She said, “1.08 meters means you are only three-feet-six inches tall?” I replied, “Oh yes, I did do it right.” She decided she had done it all wrong by questioning my calculation.

Height questions are legitimate when lining up for amusement park rides. In this case, minimum height requirements for riders are imposed for safety reasons. For example, you must be tall enough for the shoulder harness to securely lock you in place. If you’re too short you could be thrown right off the ride or fall out when it’s upside down. Or, in the case of Space Mountain at Disney’s Magic Kingdom when safety standards weren’t enforced, I thought my head was going to fall off. My neck, my spine, and falling two inches short of the height requirement screamed out that this ride was hazardous to my health.

So this dwarfism awareness month, what’s your experience with height questions?

For more of my writings, go to https://angelamuirvanetten.com where you can find retail links to my dwarfism memoir trilogy and subscribe to my weekly blog on dwarfism and disability guided by faith and justice.

So where do little people get their clothes? Although it’s possible to find clothes shopping in regular stores, it takes much longer. Sofiya described it well. “I usually look through almost every section of a store, try over 20 things on in the fitting room and come out with two pieces.” And, according to Katherine, “every once in a while there’s a diamond hidden amongst all the coal!”

And it’s not a case of one size fits all. The over 400 dwarfism types come with variations in length of limbs and torso, weight, and curves. Different types need different styles. As a dwarf with a very short trunk, I don’t wear clothes that cut me off in the middle, or use horizontal lines or large designs on the fabric. Little people with Achondroplasia have an average height torso and shorter arms and legs; their issues relate more to long pants and sleeves.

Because it’s so hard for Little People to find off-the-rack clothes that are affordable, comfortable, and stylish, our community shares shopping tips. Facebook groups are a great resource. For example, in the private group—LP Women Fashion, Shoes & Accessories—there were 40 comments answering a query about affordable places to shop for clothes that fit. Group members not only give store and brand names, but also share pics of themselves wearing particular items. The pictures help assess the usefulness of a tip, because we can see how close the buyer is to our body type and whether the tip will work for us.

Despite being able to buy many clothes off the rack, alterations are often needed to shorten sleeves, pant legs, and the crotch. Ideally people learn to do their own alterations or sew from scratch, but for those like me who lack this talent paying a seamstress is money well spent. Thankfully, I have been blessed with many excellent dressmakers through the years.

The ultimate wardrobe experience is being able to shop for clothes originally designed for little people. Although the price tag is higher, the expectation is that the product will be superior to clothes originally made for people two feet taller. Although I haven’t used any of the businesses listed below and cannot make recommendations, I’m delighted to share the following list of dwarfism clothing brands:

• It Actually Fits, https://itactuallyfits.com, a clothing brand catering to little women where they can go online and find something that fits perfectly without having to worry about alterations.

• Kathy D. Woods, https://www.kathydwoodsstore.com/, an online women’s clothing company showcasing fashions expressly designed for Little People with an impeccable fit for a variety of body types.

• Chamiah Dewey Fashion, https://chamiahdeweyfashion.com/, the UK’s first clothing brand for women with Achondroplasia dwarfism will relaunch in 2023 to serve all short stature people under 150 cm (three to five feet), irrespective of gender or specific condition.
• Auf Augenhoehe, https://www.aufaugenhoehe.design/. Explore Fashion for Little People. Find your perfect fit. No alterations needed. Made in Berlin, Germany.
• Aaya Al-Shamahi. “Egypt’s first fashion brand for women with dwarfism.” Breeze founded by Nesma Yehia. Middle East Eye. June 1, 2021. https://www.middleeasteye.net/video/egypts-first-fashion-brand-women-dwarfism

For additional reading:

• “Attack of the Giant Pants!” In Colorful You!, Fashion & Beauty by Our Readers. Audacity Magazine. November 05, 2006. https://www.audacitymagazine.com/attack-of-the-giant-pants/
• Katherine Klimitas. “Fashion For Little People With Great Taste.” Audacity Magazine. July 02, 2019. https://www.audacitymagazine.com/fashion-for-little-people-with-great-taste/
• Go to https://angelamuirvanetten.com where you can subscribe to my weekly blog and find information and buy links to my dwarfism trilogy memoir.

Adults with disabilities are similarly challenged by rogue helpers. Take for example when I pull into a parking space. They right away step up and open the driver’s door. Sounds like the chivalrous thing to do, right? However, it’s the opposite of what I need. I have to ask them to give my door back so I can lean on the armrest to lower myself to the ground. Likewise, it’s not okay for a public restroom attendant to use the master key to burst into my cubicle intent on providing assistance!

So instead of barreling in with unwanted aid, make an offer and wait for the person with a disability to accept or refuse. Typically, I’ll decline help when it’s something I can do myself. For example, people frequently offer to get my mobility scooter in or out of the car. But I say no thanks, because a lift raises and lowers the scooter from the trunk to the ground. Besides, if I let helpers manually lift the scooter in, it would be disconnected from the lift and I would be unable to get the scooter out of the car.

I’m willing to accept or ask for help, but only when the task is beyond my ability and to refuse means I’ll miss out on something I want to do or need to happen. Several cases come to mind: as a teenager I let my father carry me up and down stairs in a glow worm cave; in high school, I allowed class mates to carry me on a trek across farm hills to a beach party; after travelling thousands of miles from New Zealand to Malaysia, I accepted a helping hand up long flights of stairs with no handrails to enjoy hilltop scenery, and agreed to be lifted onto a chair to reach a laser machine for eye surgery.

Other situations that cause me to ask for, or accept, help include: reaching something on a high shelf; changing a flat tire; and breaking through unexpected access barriers, such as a driveway being blocked by a wall of snow created by a snow plow and an out-of-service elevator.

One final thing. If a person with a disability accepts or asks for help, it’s critical to wait for and follow instructions. Doing it wrong can inflict pain or injury. And no one needs a helper that makes a situation worse.

For more of my writing, subscribe to my weekly blog and find links to my dwarfism memoir trilogy at https://angelamuirvanetten.com.

Actually many people with disabilities reject the disability label. Despite having substantial limitations in major life activities—breathing, hearing, learning, reaching, sleeping, or talking, to name a few—they reject the limitations associated with disability and in so doing reject the label. They have adapted and are able to do whatever they set their sights on. It’s the attitudes of others towards them they see as disabling.

In the post ADA era, it’s generally unlawful to ask someone if they have a disability and people with disabilities are not obligated to disclose their disability. The exceptions being if a reasonable accommodation is requested or disability is a qualification for the service offered.

In the employment context, the dilemma comes when completing job applications which include a check box for disability. Should the applicant leave the box blank or check yes? It’s a personal choice with pros and cons for each decision.

The downside to leaving the box blank is that you miss the employers who are open-minded or looking to increase diversity and favor people with a disability. It also means, that to be consistent, you scrub your Curriculum Vitae clean of volunteer activities that suggest you have a disability. So it’s important to do your homework on the employer before making a decision. You need to know if diversity is encouraged; this is often the case in higher education and larger companies.

The upside to not answering the question is that you remove the opportunity for the employer to trash your application based on preconceived notions that people with disabilities make staff and customers uncomfortable, have more accidents on the job, and need costly accommodations. Of course, an employer who weeds out applications based on a disability identification is discriminating, but finding evidence to prove it is near impossible.

In the case of dwarfism, nondisclosure is moot once you get to the interview. Even though employers cannot lawfully ask if you’re disabled, they can ask how you will perform the job duties. This is the time to request a reasonable accommodation if you need one to make your performance possible. It’s also a good time to share the disability volunteer experience you may have scrubbed from your CV.      

So how do you answer the question, “Are you are disabled?”

For more of my writings on employment discrimination, check out the first two books in my dwarfism trilogy, Dwarfs Don’t Live in Doll Houses and Pass Me Your Shoes, at https://angelamuirvanetten.com/books.

This is a common question for an adult to ask a youngster. And a common answer is for the child to signal their age with fingers extended on one hand. So, when a three-year-old looks an adult Little Person in the eye it’s no surprise the child asks, “how old are you?” The adult’s response, however, can’t be counted even with all fingers and toes.

Nonetheless, it’s the ideal time to teach a child that age is unrelated to size.

Young kids aren’t so much interested in the actual age as is in knowing whether I’m a kid ready to play with them in the sandpit. They intuitively know I’m not the same as them. I used to calculate the age of the parent in the vicinity and say something like this, “I’m old enough to be your mother.” Although now I have to say, “I’m old enough to be your grandmother.”

The child usually accepts my answer and moves on to something else. It’s the parents who cringe at the exchange. Take, for example, the mother and child riding with me on an elevator. This child discerned that I was an adult and said, “look mommy there’s a little grandma.” The mother was mortified and could not wait to exit at the next floor. I told the mother not to worry, I was used to children calling me little and added, “it’s the grandma part that hurts.”

The curiosity does not end with little children. Not so long ago, a nine-year-old girl in a kids’ church program asked me, “so just how old are you?” A typical question, but the timing was surprising given that she had known me for a year. I entered the danger zone and said, “so how old do you think I am?” Her answer, “NINETY!” In that moment, she elevated me from grandma to great grandma status. It also confirmed that children have no idea how to assess the age of adults. Thankfully, I am decades away from that milestone.

Now adults know that it’s impolite to ask an adult how hold they are. Right? Well, people with dwarfism know that you can’t count on people being polite. Over the years, many adults have asked me how old I am. How I answer depends on the situation. For example, when another passenger waiting in an airport lounge asked my age, I said to him, “are you planning to tell me how old you are?” He immediately realized the impertinence of his question and explained that he had a grandson with dwarfism and was interested in knowing if he had a “normal” lifespan. He didn’t really want to know my age, but wanted to know how long his grandson could expect to live. This was not a time for me to stand on etiquette, but rather an opportunity to allay his fears and help him understand that the answer lay in his grandson’s type of dwarfism.

This post was adapted from my 1988 book, Dwarfs Don’t Live in Doll Houses, coming soon as an e-book. Used print books are available on Amazon.com.