Category: Awareness

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Awareness Little People of America

DWARFISM SENSITIVITY & AWARENESS

Dwarfism Awareness band

S ─ Speak with a normal voice volume, tone and subject matter. 

  • Don’t change tone of voice to match the one used when speaking to a child.
  • It’s not taboo to use idioms like “It’s a small world.” It was appropriate for an observer to say this when five years after graduation I met someone from my law school class halfway around the world.

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E ─ Equal treatment is expected:

  • Not pity allowing emotions to run amok.
  • Not paternalism; offer a handshake not a handout.
  • Not a pedestal that elevates us to superhero.
  • Not special treatment, but accommodations that level the playing field.

N ─ Names matter. Call someone with dwarfism by their name rather than describe them by their height. Avoid offensive words like midget, crippled, hunchback, retarded, and dumb. Drop the list of demeaning synonyms for short-stature like pint-size, runt, shrimp, shorty, or stumpy.

S ─ See the little person’s character and abilities not the outward appearance.

“But the Lord said to Samuel, “Do not look at his appearance or at the height of his stature, because I have rejected him; for God does not see as man sees, since man looks at the outward appearance, but the Lord looks at the heart.” 1 Samuel 16:7. New American Standard Bible.

I ─ Independence is highly valued by people with dwarfism as seen in the demand for:

  • Accessible and usable public buildings and facilities.
  • Accessible work spaces and off-site events.
  • Access to public or private transportation, including driving our own vehicle.  

T ─ Treat people with dignity and respect:

  • Service representatives should talk directly to the little person in front of them not to their companion who the representative assumes speaks for them.
  • Don’t condescendingly pat a little person on the head. And certainly don’t reach over a little person’s head to avoid waiting in line.
  • Respect the personal space of someone using a wheelchair or scooter. In other words, the armrest or writing surface is not free space to be appropriated.

I ─ Imagine yourself in the other person’s shoes. Not so that you thank God you are not the one with dwarfism, but to be sensitive to needs.

V ─ Value differences.Remember each little person is an individual and will have their own way of doing things. For example, some lower counters in their homes, others use stools and climb; some drive with pedal extensions, others use hand controls; and, when talking to average-size people, some little people prefer they kneel down or crouch for an eye-to-eye conversation, others don’t want any concession to height differences.  

I ─ Interact as you do with any person. Common courtesy applies. Adults should not ask personal questions. Children are given a pass when their curiosity opens the door to a learning opportunity.

T ─ Take cues from the person with dwarfism. Ask if help is needed before rushing in and creating a problem.

Y ─ be Yourself. Relax. Joke. Smile. Encourage.

This post is based on principles and examples found in books I and II of my dwarfism memoir trilogy: Dwarfs Don’t Live in Doll Houses and PASS ME YOUR SHOES: A Couple with Dwarfism Navigates Life’s Detours with Love and Faith,https://angelamuirvanetten.com/books/.

You may also like prior posts:

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Awareness

Read and Change Your Life for the Better

Dwarfs Don't Live

Reading is good for your health. According to the promoter of National Read A Book Day on September 6, reading renews energy, elevates mood, promotes more restful sleep, and slows the progression of dementia. Another study shows that adults who read at least 30 minutes a week are 20% more satisfied with life than those who spend less time reading.

Add to that the wisdom of others who promote the value of reading:

  • “Reading is an exercise in empathy; an exercise in walking in someone else’s shoes for a while.” ~ Malorie Blackman
  • “The more that you read, the more things you’ll know. The more that you learn, the more places you’ll go.” ~ Dr. Seuss, I Can Read With My Eyes Shut! 
  • “Read to make yourself smarter! Less judgmental. More apt to understand your friends’ insane behavior, or better yet, your own.” ~ John Waters, Role Models
  • “We read to know we’re not alone.” ~ William Nicholson

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Even though most of us know what’s good for us, we often don’t do it. Reading is one of those activities. Reportedly, 81% of people don’t spend as much time reading as they’d like. I’m one of those people. As a result, my “want to read” list has 235 books! 

So how do we decide what to read? Actress Emma Thompson gives us a hint. “Books are like people, in the sense that they’ll turn up in your life when you most need them.”

After writing part one in my memoir trilogy—Dwarfs Don’t Live in Doll Houses— https://angelamuirvanetten.com/dwarfs-dont-live-in-doll-houses/, I was surprised how many parents of young children were hungry for the information I shared about my growing up years in New Zealand. One mother told me, I keep your book by my bedside and refer to it frequently. Elizabeth, a parent of a short-statured adult, revealed:

“I thought I knew a great deal about what it was like to be a short-statured person but like so many others, I was not realistically seeing life as a Little Person experiences it.”

And Rosemary wrote:

“In this book is pure wisdom and great help! As I am petite and short in height, I had experience with stares and oglers in life. . . Bravo and cheers for a wonderful, in-depth analysis!”

Susan, the grandparent of a teenager with Down Syndrome said:

“Your book has answered my questions. With this new understanding, I now see ‘little people’ in no need of pity, but as my equal and capable of achieving all God has planned for them.”

Two colleagues of average height appreciated having misconceptions dispelled and being informed of everyday obstacles a little person overcomes.

So this year, how about enjoying National Read A Book Day by reading a Kindle e-book or used paperback of Dwarfs Don’t Live in Doll Houses available on Amazon.com? Or, due to my sister’s discovery of a box of print books in her basement, order a new print and autographed copy for $4.99, plus $4.00 postage, from angela@angelamuirvanetten.com. Need more information? Go to https://angelamuirvanetten.com, read about my memoir trilogy, and subscribe to my weekly blog.

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Awareness

What Comes First: Person or Identity?

Compare

I was a crippled child, a handicapped teenager, and now a disabled adult. So what accounts for these changes in my condition? Apart from aging through six decades and shrinking two inches, my condition hasn’t changed. I’m still a dwarf of 40 inches with multiple, congenital, joint dislocations and fusions. The change is in the words chosen to describe the disability class of people to which I belong.

When I blogged about offensive words on November 2, 2020, I remarked, “It’s not enough to keep up with fashion trends, we must also stay current with our language.” But when advising readers to use person-first language, I passed over a seismic shift in disability terminology. Many people with disabilities now use identity-first language.

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So what’s the difference?

I was introduced to person-first language in 1981 when I came to the United States from New Zealand on a Winston Churchill Fellowship. My purpose was to study disability civil rights laws and public education programs to improve the public’s attitude towards people with disabilities. That’s when I learned to use language that recognizes the person before the disability on the premise that our disabilities don’t define us. For example, instead of saying the blind man or the deaf girl say, the man who is blind or the girl who is deaf.

However, I was recently pulled up short by a tweet of Emily Ladau, author of Demystifying Disability, saying: “Calling myself a disabled person is not a denial of my personhood; it’s a celebration of part of me.” People with various disabilities have expressed a similar sentiment.

  • “I Am Not a Person With Epilepsy. I Am an Epileptic.” This doesn’t imply that epilepsy defines the person, but rather it acknowledges epilepsy as part of the individual that fundamentally shapes their identity.
  • Many people proudly call themselves autistic and reject being called “people with autism.” They see autism as integral to their identity.
  • As one mother wrote supporting her daughter’s choice of identity-first language, “It’s not inherently bad to say a Down’s woman. Using person-first language is like saying, “don’t look at what’s wrong first (Downs), look at what’s right (the person).”

So where does that leave the public intent on being sensitive? Has person-first language been supplanted by identity-first language? Not necessarily. More like, it depends. Disabled people like any class of people are not all cut with the same cloth. In the case of dwarfism for example, the terms dwarf, little person, or short-statured are all in play. It’s not a case of right or wrong. Rather it depends on the person which term they prefer. Likewise, person-first or identity-first language is a personal preference which each of us are free to decide for ourselves.

So how do people figure out an individual’s preference? No need to walk on eggshells. Just ask them. But if you’re talking to, or writing about, a group of people read their literature for any preference indicators. If none are available, consider explaining your word choice.

For discussion of diverse disability issues, link to my weekly blog and dwarfism memoir trilogy at https://angelamuirvanetten.com.

Categories
Awareness Inclusion

Dancing Differently

Dancer Faith

Question:
What does amputation, burn injuries, deafness, autoimmune disorder, dyslexia, ADHD, multiple sclerosis, dwarfism, and blindness have to do with one another?
a) disability
b) dancing
c) different ability
d) all of the above

Answer:
d) as demonstrated by 11 celebrities with disabilities paired with professionals in Dancing with the Stars from Season 4 to Season 27.

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In season 4, Heather Mills competed to show you can do anything with an artificial leg. Amy Purdy dancing with two below the knee prosthetics was runner-up in season 18. Third place in season 20 went to Noah Galloway who danced with both a prosthetic arm and leg. Judge Carrie Ann Inaba said Noah broadened her scope of what dance looks like.

In Season 6, Marlee Matlin shattered the notion that hearing the music is integral to dancing. Instead she relied on her partner to express the music to her in his body. In Season 22, Nyle DiMarco described “seeing” the music that his ears couldn’t hear. Along with memorizing the timing of his partner’s moves and scratch and squeeze signals, they danced their way to winning the coveted Mirror Ball trophy.

The season 13 winner, J.R. Martinez, has severe burns on more than 34 percent of his body. He competed to give burn survivors hope, pride in their scars, and belief in themselves while facing their fears and limitations.

Jack Osbourne, a Season 17 celebrity with multiple sclerosis, danced to raise awareness and more research. He encouraged those with MS to set and accomplish achievable goals every day. Osbourne finished third.

Attention-deficit/hyperactivity disorder (ADHD) featured as a disability for celebrity and professional dancers alike. Both Jack Osbourne and Nev Schulman—Season 29 runner up—have ADHD. Professionals Daniella Karagach, Karina Smirnoff, and Derek Hough also use dance as a place to channel their excess energy and improve focus.

In Seasons 23 and 25, Terra Jole and Victoria Arlen both reached the semifinals. Terra, who has dwarfism, announced that being different is a great thing. And Victoria, an autoimmune disorder survivor, aspires to replace the term “disability” with “different ability.”

In season 27, Danelle Umstead relied on her partner for guidance. Because she is blind, touching his shoulders or legs allowed her to feel the movement and paint herself a picture.

Just as Dancing with the Stars showcases the beauty of dance, the celebrities with disabilities demonstrated the diversity of dancers. No matter the disability, dance has a place for everyone. Wheelchair users. Cane and crutch users. People with Down Syndrome. You name it.

And as Joe Powell-Main, UK para-dance champion who performs in his wheelchair said, “Sometimes it doesn’t look like conventional ballet—people in point shoes, legs up by their ears—but there needs to be a willingness to look beyond that and see that it’s different.”

On this 40th anniversary of International Dance Day (April 29), let’s dance to improve our mood, creativity, mental and physical health, self-confidence, ability to follow instructions, and perseverance. Let’s all dance in our own different style.

For discussion of diverse disability issues, link to my weekly blog and book trilogy on my website at https://angelamuirvanetten.com.

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Awareness

Not Your Typical Father’s Day Story

Alz purple

Celebrating Father’s Day in September is out of kilter with the American calendar. But right on time in New Zealand and Australia where fathers are honored in September not June. And given that my father died of Alzheimers in Australia, this post is timed with Down Under tradition and World Alzheimer’s Day.

Every 65 seconds someone in the U.S. develops Alzheimer’s Disease, the most common type of dementia. And four out of five New Zealanders knows, or has known, someone with dementia. In my family, it was my father’s Alzheimers that brought the disease into our homes. 

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In the early stages, we knew something was wrong with dad even though he still lived independently. Dad also knew things weren’t right. In a notebook filled with random thoughts and reminders he wrote, “I am definitely ready to stop work.  I’m no longer sharp enough to carry on in real estate.” He described himself as muddled and mixed up.

As dad’s condition regressed from mild to moderate, he repeatedly misplaced things, became more temperamental, and got lost in the town where he grew up and once knew like the back of his hand. Alzheimers is correctly dubbed “a family disease” given the impact the diagnosis has on family members. When dad needed more support, my brother and sister shared caregiving duties. But they had to contend with his refusal to eat less and exercise more, confusion, restlessness, and agitation as he tried to remember what he had forgotten. If he remembered what he was looking for, he usually didn’t find it. He even needed reminders to shower and change clothes.

When dad reached the severe stage of Alzheimers, he needed 24/7 care to keep him safe. All three siblings and spouses accompanied him on the day he moved into an aged care residence. Dad was warmly greeted by staff and was all smiles when he was served a delicious three-course meal. We handled it like any other day and left him saying, “We’ll see you later.” He never protested this change of residence.

For the next five years family and friends mourned the gradual loss of dad’s cheerful personality, corny jokes, smile, conversation, alertness, memory, ability to read and enjoy family photos, and physical functions of walking and feeding himself. So when we gathered for his memorial services we were ready to eulogize his 81 years of life. In his home church at Papakura East Presbyterian we celebrated his passing into eternity with Jesus—the one dad greeted every morning with “Good morning Lord” after opening the bedroom curtains.

We remembered the good times along with dad’s many sayings:

  • Civility hurts no one.
  • I’m seldom right, but I’m never wrong.
  • Patience is a virtue seldom possessed by a woman and never by a man.
  • Answering the phone, Santa Claus speaking or Russian Embassy.
  • There are only 364 days until Christmas (his annual quip on December 26th).
  • If someone gives you trouble, kick them in the shins and climb up the bumps (his advice to me as a child).

This post includes highlights from “Pass Me Your Shoes,” the second book in my dwarfism trilogy, chapter 24, Dad’s Alzheimer’s Disease. Buy links are available on my website at https://angelamuirvanetten.com/pass-me-your-shoes/.

Categories
Awareness Little People of America

Dual Donahue Dialogue Differences

Donahue LPA panel

A two-time guest of Phil Donahue, the father of daytime talk shows, I appeared on August 8, 1984 in Chicago and October 12, 1989 in New York City. In 1984, a producer asked Robert Van Etten, president of Little People of America (LPA), to name panelists; in 1989, a producer invited me to join a panel based on my many media interviews resisting dwarf tossing.

But what a difference five years makes.

In Chicago, the LPA panelists were honored guests in the historic and luxurious Drake Hotel. We joined LPA friends riding in a limousine to the studio, being pampered by hair and make-up artists and hanging out in the green room.

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Donahue talked with us before and after the show. He was playful with the kids and humbly kneeled in the center of our group photo. And we were treated to a post-show fine dining luncheon at the Drake.

In New York, I stayed in a nondescript hotel and my limo ride to the studio was with panelists I didn’t know. We did not see Donahue before or after the show and the food platters in the green room substituted for any post-show meal.

In Chicago, we had no concerns about the program veering off in the wrong direction. We trusted the show would educate the studio and TV audiences about LPA and dwarfism. Our diverse panel was well equipped to answer questions on marriage, parenting, education, employment, medical and other issues. There was no pitting one group against another.

Not so in New York. In order to maintain market share, Donahue had gradually shifted from thoughtful conversations to more sensational topics. For example, in a 1987 show on cross-dressing, he wore a woman’s skirt! So what would I encounter on a show on the violent entertainment of dwarf tossing and roller derby in which the loser is tossed into a pool with alligators?

I was thrown into a lopsided debate on New York State’s proposed ban on dwarf tossing in licensed establishments serving alcoholic beverages as the only panelist supporting the ban! A dwarf-tossing business owner, promoter, and dwarf “tossee” all opposed the ban. At least there was a medical researcher who spoke generally about the negative effects of violent entertainment.

And then there was the audience. In Chicago, it was supportive and included 16 LPA members, and four of Robert’s relatives. The reception was warm, friendly, and open to learning about little people. In New York, the reception was mixed. Although the majority appeared to favor a dwarf tossing ban, a sizeable and vocal group opposed infringing on the dwarf’s freedom of choice to engage in dangerous activity.

Clearly it was a no-brainer for LPA to do the Chicago educational show. But not knowing how Donahue would handle the dwarf tossing controversy in New York was a risk I had to take. Thankfully, the exposure helped propel the bill to ban dwarf tossing. Soon after the program, legislators began signing on as bill co-sponsors.

This post is a behind the scenes look at Donahue talk show appearances discussed in chapter 2—President Robert: The Second Term—and chapter 11—Biting the Legislative Dust—in “Always an Advocate,” the third book in my dwarfism trilogy, releasing on October 8, 2021. Updates are found at my website, https://angelamuirvanetten.com/always-an-advocate/.

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Awareness

Plan to Stay Safe

Firemen
Image by Matthias Groeneveld from Pixabay

What words come to mind when you read the following list: earthquakes, floods, hurricanes, tornados, tsunamis, volcanoes, wildfires, winter storms? I think of danger, death, and destruction. But on April 30, National PrepareAthon! Day, we can plan so that death is not a consequence of any of these disasters.

Thankfully we don’t have to plan for every kind of disaster where we live. But we do need to be aware of, and ready for, potential hazards in our locale. The first step is to be informed when disaster is imminent. Signing up for emergency phone alerts gives us life-saving information targeted to our area.

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This emergency alert system will also broadcast on TV and radio. But a battery-powered or hand crank radio and a NOAA Weather Radio with tone alert are essential when the power goes out.

Safety should drive our decision whether to shelter in place or evacuate. Follow advice of emergency management officials on this one. For example, if your home is built to withstand hurricane force winds, it’s okay to hunker down behind shuttered windows. But don’t wait until the last minute to ask someone for help with your shutters. They’ll be too busy with their own place and you’ll be left blowing in the wind.

If your home can’t be made safe, decide whether you’ll evacuate to family or friends in a safe area or go to a general population shelter. Check in advance which one works for your disability and plan how you’ll get there. Do you have enough gas in the car? If you don’t have a vehicle and need accessible transportation to a shelter, make sure you’re on the manifest for a ride in an emergency. If you have medical equipment that requires electricity and you don’t have a generator at home, plan on going to a special needs shelter where you can stay connected to a power source. Find out if pre-registration is required. Those dependent on dialysis or other life-sustaining treatment need to find out where they should go.

If evacuation is ordered, learn the evacuation routes. Safeguard important and valuable papers, including model numbers and providers of assistive technologies so it can be replaced if lost or destroyed. Withdraw some cash.

Update your emergency supply kit, both at home and in the car, that includes water, nonperishable people and animal food, first aid supplies, and Bible. This is critical for survival if you lose power or get stranded in your car.

If separated from family during an emergency, know how you’ll contact one another afterwards. Establish a family meeting place that’s easy to find. Create phone contact lists for family members so you can text them with your location. Help rescue workers reach your loved ones if you’re incapacitated; type “ICE,” the acronym for “in case of emergency,” before a person’s name in your cell phone so they know who to call.

So how far along are you in your emergency planning? Procrastination could be a costly mistake.

This post highlights FEMA guidance at https://www.ready.gov/plan and should be consulted for other important details. Also see Emergency Management. National Council on Disability, accessed April 20, 2021. https://ncd.gov/policy/emergency-management and An ADA Guide for Local Governments. Making Community Emergency Preparedness and Response Programs Accessible to People with Disabilities, accessed April 20, 2021. https://www.ada.gov/emergencyprepguide.htm

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Awareness

Shine Blue on Autism in April

Visual communication board

“People with Autism Spectrum Disorder (ASD) are like salt-water fish who are forced to live in freshwater. They are fine if you just put them into the right environment. When the person with ASD and the environment match, the problems go away and they even thrive. When the environments don’t match, they seem disabled.” Humphrey (2008).

Language impairment, social deficits, repetitive behaviors, sleep issues, gastrointestinal disorders, and anxiety are characteristics of ASD: 40% are nonverbal; 70% have average to above average IQ scores.

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For the families affected by autism, each day can be an adventure in uncertainty:

  • Will Johnny have a meltdown at school forcing mom to take off work again?
  • Will Max make it through a quick stop at the grocery store or will he scream down the aisles?
  • Should we pay for Suzie’s therapy or buy Christmas presents?

The Hope Center for Autism in Stuart, Florida is a public charter school that helps families navigate these adventures. Parents entrust their children to staff dedicated to supporting sensory, communication, and self-management needs in preparation for a successful life.

“Children with autism are colorful, they are often very beautiful, and like the rainbow they stand out.” Adele Devine

One Hope Center staff member dreamed of working with ASD kids as far back as eighth grade, others saw it as a stepping stone to gain pediatric experience before graduating to working with adults. But after several years at the Hope Center, staff no longer see their jobs as temporary. They fell in love with the children, found their calling, and can’t imagine doing anything else. Excited to go to work every morning, they leave every day feeling part of a big, connected community.

“If they can’t learn the way we teach, we teach them the way they learn.” O. Ivar Lovaas

“Autism makes you listen louder. It makes you pay attention to an emotional level as well as an intellectual level.” Jace King

“Adapting our own perception, following rather than leading and building bridges are all keys to helping the child with Autism learn.” Adele Devine

Hope Center days are filled with learning, fun, and energy. Staff do things a little differently and adapt to change in unique ways:

  • Incorporate blue, the favorite color.
  • Use a picture symbol vocabulary board with every lesson.
  • Use fidget toys.
  • Sing skip counting songs.
  • Bond with and earn student trust.

“Cherish the children marching to the beat of their own music. They play the most beautiful heart song.” Fiona  Goldsworthy

“If we strive for the love, joy, and happiness the students have, the world would be a much BETTER place.” Gina Williamson

Special thanks to several staff at the Hope Center for Autism, https://www.hopecenterforautism.org,  who contributed to this post: ESE Teachers Natalie Rzeznik and Alexis Matonti; paraprofessionals Maria Gutierrez, Sandy Jerrells, Gina Williamson, and Sarah Zeilinga; Tundra, Jungle, and behavior staff; Theodore Hassel, PE Coach; Laura Drake, Aftercare Provider; Katarina Suarez, Speech-Language Pathologist; and Joanne Sweazey, Executive Director.

This post first appeared on Angela Muir Van Etten’s blog on April 5, 2021 at https://angelamuirvanetten.com/. Readers are encouraged to share the post, but are asked to include the website link.