Month: September 2020

Categories
Little People of America

How My Life Would Be Different Without LPA

Cups

Image by congerdesign from Pixabay

  • I would not have married a President.
  • Local LPA communities would not have welcomed me when I moved from New Zealand to Virginia to Maryland to Ohio to New York to Florida.
  • I would not have enjoyed so much hospitality from LPA members opening their homes for meetings.
  • I would not have been a guest in so many modified LP kitchens and seen how to modify my home for greater comfort and safety.
  • I would not have been on the advocacy teams that defeated dwarf tossing in Chicago, Florida, and New York.

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  • Conservative Rush Limbaugh and Liberal Howard Stern would not have criticized me in a radio broadcast on the same day for suggesting that Little People have a “cause.”
  • I would not have talked to so many reporters.
  • I would not have attended 28 national conferences in 20 states and four countries.
  • I would not have received an LPA education scholarship.
  • River rafting in the afternoon and modeling my wedding dress in the evening would never have happened.
  • I would never have read so many great books written by people with dwarfism.
  • I would never have used a scooter to extend my endurance and long term joint maintenance.
  • ATMs and credit card readers on gas pumps at my local gas station would still be out of my reach.
  • I would have earned fewer frequent flyer miles.
  • I would have stayed in fewer hotels.
  • I would have missed the free advice from medical experts in dwarfism.
  • My T-shirt wardrobe would be deficient.
  • I would have missed meeting other Little People with my diagnosis.
  • I would have got a lot more sleep.
  • I would have fewer friends.
  • My photo albums and newspaper clippings would not feature Little People.
  • I would not have met so many celebrities.
  • I would not have met so many Little People from all over the world.
  • I would not have seen an LP toddler grow from jumping up and down on my water bed to graduating from college, and getting married.
  • Free time would be a reality not a concept.
  • I would not have spent so many weeks of my life in meetings and become proficient with Robert’s Rules of Order.
  • I would not have read LPA Bylaws or cared enough to try and change them.
  • I would not have laughed and cried so much.
  • The opportunity to encourage parents to raise their child with dwarfism with the same expectations and boundaries as their other children would have been lost.
  • I would not have learned the lessons that come from being in the majority.
  • I would have missed being in the LP melting pot of diagnoses, gender, ethnicity, nationality, economic and faith backgrounds.

This post was adapted from a 2005 LPA Today article. For additional insights, go to Amazon.com and order your copy of my book—PASS ME YOUR SHOES: A Couple with Dwarfism Navigates Life’s Detours with Love and Faith—a new release during Dwarfism Awareness Month in October 2020.

Categories
Disability Rights

REGISTER TO VOTE, THEN VOTE AND MAKE IT COUNT

Vote



Image by amberzen from Pixabay

Are you registered to vote? National Voter Registration Day on September 22, 2020 is a good day to check. If you’re thinking why bother, read on to find out why voting matters for both constituents and election workers.

Constituent Voters

V ─ VOTE because federal laws—the Americans with Disabilities Act and Help America Vote Act—protect the voting rights of people with disabilities.

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O ─ ONE vote can make the difference between winning and losing an election. Google it and you’ll see. Tie votes have been broken by pulling a name out of a hat, a coin toss, or drawing the highest card. Don’t surrender your vote to chance! Did you know that, in the 2018 midterm election, 20% of voters either had a disability or lived with someone who had a disability? i.e. more than Hispanic/Latino voters. Vote and be sure that our powerful voting bloc is heard.

T ─ TOUGH choices in troubled times is no excuse for not voting. Tear through the trial of long lines or people not wearing masks, and vote early or by mail.

E ─ EDUCATE yourself on candidate platforms, referendums, and proposed amendments.

R ─ REGISTER to vote prior to rolls closing for the November general election. If you don’t know the registration cut-off date, find the date in your State by clicking on this link, https://www.vote.org/voter-registration-deadlines/

S ─ SERVE as an election worker. If you need an accommodation, ask for it. I served as an Inspector giving voter passes at eight primary or general elections with two accommodations—my adjustable height Ergo Chair for Little People and a block of wood. Yes, you read that right, a block of wood! The block was placed under the back of my assigned Electronic Voter IDentification (EVID) machine tilting it forward so I could read the screen.

Election Workers

V ─ VALUE differences in each unique voter.

O ─ OFFER help, but allow voters to choose their own helper—a friend, family member, or an election worker. If help is accepted, ask how you can help and wait for instructions. Don’t insist on helping if the offer is refused.

T ─ TRAINING is mandated to promote access and participation of individuals with disabilities. Local disability advocates are ideally suited to conduct this training. For ten years, I provided disability sensitivity training to election workers on terminology, communication, respect, and access issues.

E ─ EQUAL access to facilities and equipment is required. This includes the opportunity for private and independent voting. Accessible voting machines—equipped with earphones and other modifications—must not only be in the precinct, but must also be ready to use.

R ─ RESPECT a voter’s pace and space.For example, don’t pat or reach over a voter’s head.Allow a voter to move and speak at their own pace.

S ─ SPEAK with a typical voice volume, tone and subject matter.  People who are blind are not deaf. People with dwarfism are not children. People with intellectual disabilities understand what workers say about them.

Almost time to order your copy of Angela Muir Van Etten’s book—PASS ME YOUR SHOES: A Couple with Dwarfism Navigates Life’s Detours with Love and Faith—which releases during Dwarfism Awareness Month in October 2020.

Categories
Hospitality

Welcome to Our Home

Welcome to our home
Image by Robert Fotograf from Pixabay

Offer hospitality to one another without grumbling. ∞ 1 Peter 4:9 New International Version)

Hospitality is an opportunity to deepen relationships and help one another.  It doesn’t take a big, fancy house to share a meal or offer a bed for the night. We learned this as newly-weds in a one bedroom apartment and continue the practice 39 years later in our larger custom-built home. 

Membership in Little People of America (LPA) and having family and friends separated by thousands of miles has given us many opportunities to welcome people into our home. In recent times, it also helps that we live in Florida—a great vacation destination and escape from northern winters.

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LPA’s mission—to improve the quality of life for people with dwarfism—is largely achieved through a network of people with short stature, family members, and professionals who support and encourage one another. Hospitality is a big part of how this is achieved. LPA members open their homes for local chapter meetings and welcome those visiting from out-of-town. Churches encourage home fellowships where people are accepted, encouraged, and loved. Families and friends enjoy a special bond maintained by spending quality time together. What better place than in your home?

As Little People with a limited number of steps in our day, my husband Robert and I developed our own brand of hospitality. After a grand tour of our home that includes showing the location of food and supplies, guests are encouraged to make themselves at home and help themselves. In our first year of marriage when we lived in Baltimore, our proximity to Johns Hopkins Hospital allowed us to shelter LPA families of hospital inpatients or outpatients returning for follow-up appointments. The special adaptations we’d made in our apartment also gave parents ideas on how to modify their homes for their child with dwarfism. We also hosted a boys’ weekend retreat when a couple asked us to help their son who was having difficulty adjusting to his size.

Robert organized the boys weekend to include swimming, pizza, a Star Trek movie, and the boys helping to cook breakfast. Billy—the inspiration for the retreat—had started the weekend making excuses whenever he was asked to do something, “because he was the smallest.” Well, in the company of five little people he’d definitely picked a losing argument. By Sunday, Billy’s perspective had improved and he stopped making references to his size. More than 25 years later, we learned that the boys retreat had made a big impression on “Billy.” The revelation occurred at the wedding of Mr. Bill Klein whose bride, Dr. Jennifer Arnold, had been the flower girl at our Florida wedding in November 1981. Who could have imagined that the two children whose lives we separately touched in Florida and Maryland would meet as adults, fall in love, and star on TLC’s reality show, The Little Couple.

Extending hospitality to others has enriched our lives. How have you benefited from giving or receiving hospitality? This post was adapted from Angela Muir Van Etten’s book—PASS ME YOUR SHOES: A Couple with Dwarfism Navigates Life’s Detours with Love and Faith—a new release in October 2020.

Categories
Dignity

Read A Book Day

Reading a book by the water
Image by Bibliotheek Bornem from Pixabay 

September 6th is National Read A Book Day. Who knew? The idea is for people to spend the day reading an enjoyable book which reportedly improves memory and concentration and reduces stress. Older adults who spend time reading are said to slow cognitive decline.  

The promoters of Read A Book Day encourage us to sit back, relax and read a book from a featured list of books. But if you’re like me, you already know what you want to read. The books might be sitting on your bookshelf or on your buyer wish list. Whatever the case, I would like to add a book to your recommended reading list—“LOOKING UP: How a Different Perspective Turns Obstacles into Advantages.”

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This is a perfect choice for Read A Book Day because many Amazon customers found it hard to put the book down and some read it straight through in one sitting. It’s a must read as attested by Cherie Blair, Bono, Michael Bloomberg, Scott Harrison, Sheryl Sandberg, Clay Scroggins, and many others.

Michele L. Sullivan is the author of this Harper Collins Leadership book published in February 2020. As the first female President of the Caterpillar Foundation, Michele describes how looking up to people from the vantage of four feet was not just a physical phenomenon, but a leadership practice of elevating the people around her. Michele skillfully intertwines her childhood lessons of embracing her physical differences as a person with metatropic dysplasia, a rare type of dwarfism, with adult lessons of growing on the inside. She credits her parents for teaching her that she was more than her size and that life was not all about her. LPA (Little People of America) helped Michele with self-acceptance and interdependence.

Michele attributes her gift of empathy and compassion shared with foundation beneficiaries, partners and staff around the world to her family and the people she met in LPA and during five summers of orthopedic surgeries and therapy. She introduces the book with her most potent life lesson—learning to expand her view of others saying, “When we learn how to elevate the people around us to discover and champion what’s noble and beautiful and powerful in them we uncover the path of impact in one another’s lives.”

Indeed, Michele successfully passed along this lesson to readers of her book. I agree with the many customers who describe the book as inspirational, but not for the reason you might think. Michele’s story does not inspire people to admire her courage for all that she has endured, but—through laughter, tears, and example—inspires people to change their perspective and to see people for who they are on the inside.

The book is packed full of life changing advice and wisdom about the value in every person, including ourselves. Looking Up is not just the name of a book, but a principle to follow that changes how we see and impact people.

To read more of Angela’s writings, subscribe to her weekly blog at https://angelamuirvanetten.com and coming soon is her own book—PASS ME YOUR SHOES: A Couple with Dwarfism Navigates Life’s Detours with Love and Faith—due to release on October 1st.