Author: Angela Van Etten

Categories
Celebrations

Christmas Lights

Christmas lights

Many have given up listening to the news. They are overwhelmed by the darkness and despair reported about horrific crimes, natural disasters, dismal economic forecasts, and global health crises. But Christmas is a time when people look for a break from the darkness. They pause from their routines and hope for a season of love, peace and joy.

People go to great lengths to decorate, buy the perfect gifts, and be together with family and friends. Robert and I are no exception. We have driven hundreds of miles and flown thousands of miles to be with family at Christmas.

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For Christmas 1983 we treasured the time with Robert’s relatives in Munster, Indiana despite the December 25th headline in the Chicago Tribune: “25 below! It’s misery.” Three years later we loved the time with my family in a summer and sandy Christmas gathering at the beach in Whangamata, New Zealand.

There are many traditions associated with Christmas, but central to the celebration are the lights that sparkle in candles, Christmas trees, and houses lit up with strings of Christmas lights. The lights take away the darkness and brighten our spirits. We sing carols that proclaim the light Jesus birth brought to the world. For example, the third verse of Silent Night describes Jesus as “Son of God, love’s pure light.” Even more precious are Jesus own words:

“I am the light of the world. If you follow me, you won’t have to walk in darkness, because you will have the light that leads to life.” John 8:12

Cancel culture has tried to rob us of the true meaning of Christmas. It offers the glitz without being plugged into the source of the light. We need to debunk this lie and freely declare that Christmas is a celebration of the birth of Jesus. Immanuel, God with us, is the greatest gift of all.

“For God was in Christ, reconciling the world to himself, no longer counting people’s sins against them. And he gave us this wonderful message of reconciliation.” 2 Corinthians 5:19.

And there’s more good news. The light that Jesus brought to the world is not limited to Christmas day. It shines every day of the year. And those who follow Jesus are appointed to beam as His lights.

“You are the light of the world—like a city on a hilltop that cannot be hidden. No one lights a lamp and then puts it under a basket. Instead, a lamp is placed on a stand, where it gives light to everyone in the house. In the same way, let your good deeds shine out for all to see, so that everyone will praise your heavenly Father.” Matthew 5:14-16.

So as we celebrate Christmas this year, let us bask in Jesus light and share it with all who are willing to listen.

Note

In lieu of unexpected circumstances I am skipping all blog posts for the month of January 2025. The next blog post will resume February 3, 2025.

Photo credit: Image by Couleur from Pixabay

This post was first published on December 20, 2021 on Angela Muir Van Etten’s blog at https://angelamuirvanetten.com/christmas-lights/

You may also want to read:

Good News Brings Joy. December 25, 2023. https://angelamuirvanetten.com/good-news-brings-joy/

Poinsettias and Christmas. December 12, 2022. https://angelamuirvanetten.com/poinsettias-and-christmas/

Finding Joy at Christmas. December 21, 2020. https://angelamuirvanetten.com/finding-joy-at-christmas/

Categories
Inclusion International

International Day of Persons with Disabilities

international disability day

Despite disability representing one billion of the world’s population, International Day of Persons With Disabilities (IDPD)—celebrated on December 3—is not typically included among special events in December like Pearl Harbor Remembrance Day (7th), Christmas (25th), Hanukkah (25th), Kwanzaa (26th), and Boxing Day (26th). But IDPD also belongs in this December list as an occasion to remember and honor the contributions of people with disabilities.

According to Wade Lange, Founder and United Nations Ambassador for IDPD, it’s more than just an annual day. It’s a movement used to break down barriers to inclusion and advocate for the rights of people with disabilities.

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The World Health Organization celebrates the day by promoting the rights and well-being of persons with disabilities at every level of society and development.

Given the dramatic decline in my husband Robert’s health in the year of his 75th birthday, my focus on disability has shifted to those who have reluctantly entered a different level of society—residents in institutional care for rehabilitation or skilled nursing. In the facility in which Robert resides, we are surrounded by people navigating the halls using wheelchairs and walkers. Many are unable to communicate verbally, but some reach out with a smile, wave, or greeting. For the most part, Robert’s outreach is limited to words like hi and thank you. A few are able to converse. One woman mistook me for a new resident and welcomed me to the facility; another cautioned me to slow down in my scooter; and someone else told me I look like I’m 32 years old i.e. more than half my actual age of 71.

The 2024 theme of IDPD—amplifying the leadership of persons with disabilities for an inclusive and sustainable future—is inappropriate for this disability segment of society. Some are like Robert and previously served countless hours in their communities as leaders on disability issues. Others are new to disability having acquired speech, memory or mobility impairments as they have aged. They don’t even see themselves as disabled. Take for example the 90-year-old woman I met when working as an advocacy specialist for an independent living center. In order to qualify for services she needed to identify as someone with a disability. However, despite using a walker to ambulate she told me she was not disabled.

So while disability advocates continue to work for funding home and community based services to meet rehabilitation and personal care needs, let’s not forget the disabled residents currently living in institutional facilities. Let’s broaden the IDPD theme to include people with disabilities whose world has narrowed to the four walls of an institution. Let’s knock down the walls of separation by visiting; helping with laundry, clothing purchases, and favorite food (within dietary restrictions); respecting their right to vote; bringing entertainment and animal encounters; honoring choices for religious activity, bed time, and the like.

So how will you broaden IDPD to include people in institutional care?

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Categories
Celebrations

Giving Thanks in November

flower

Thanksgiving is a national holiday celebrated in the United States on the fourth Thursday in November. It’s origin dates back to 1621 when Pilgrims celebrated their first corn harvest in Plymouth, Massachusetts with Native Americans who taught them survival skills. Four hundred years later thanksgiving feasts continue to be shared among family and friends.

In 1981, I shared my first thanksgiving meal as a newly-wed with my husband Robert and his family. Today as I reflect back on 43 years of marriage, I reflect on a few wonderful things that have also happened in November:

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  • The Little People of America (LPA) battle against dwarf tossing had several notable actions worthy of thanks:
    • In 1985, the Chicago Sun Times reported cancellation of the dwarf tossing event planned in Chicago.

    • In 2001, “Dave the Dwarf” filed a lawsuit asking the court not to enforce the 1989 Florida law prohibiting dwarf tossing contests in licensed establishments. Thankfully LPA advocacy caused a State agency to pass a rule strengthening the law and another contest was cancelled.

    • In 2011, 146 printed pages of a change.org petition with 4,834 signatures was delivered to Florida State Assembly Representative Workman after he filed a bill to repeal the 1989 law. Thankfully the bill died in Committee.
  • In 1990, I was grateful to receive news that I had passed the New York State bar ethics exams.
  • In 1991, Robert’s business moved out of the basement in our home into a commercial office building.
  • In 1997, Robert started work as a rehabilitation engineer at the Florida State Department of Labor, Division of Vocational Rehabilitation.
  • In 1999, the Architectural and Transportation Barriers Compliance Board published a Notice of Proposed Rulemaking to update the Americans with Disabilities Act Accessibility Guidelines. This was the precursor to the July 2004 publication of the final rule lowering the reach range from 54 to 48 inches.

Fast forward 25 years and we find ourselves in our seventies with our marriage vow to stand by each other no matter what happens is staring us in the face.

Robert’s health took a dive in March 2024 when he was diagnosed with End Stage Renal Disease and began kidney dialysis three times a week. Add to this issues with his cognition, respiration, mobility, and hearing. This year Robert has been a regular caller of 911, taken to the ER seven times and admitted to hospital five times. He has received physical, occupational and speech language therapy at home and in two different rehabilitation facilities. And now in November 2024 his level of care precludes his return home and requires admission into a skilled nursing facility.

So what do we have to be thankful for in these circumstances? Admittedly, it is a true test of our faith. But I have no doubt that just as God has taken care of us in the past, we can trust Him to do the same in the future. I am grateful that God knows what we need and has promised to provide for us better than sparrows and lilies. (Matthew 10:29-31.)

Image credit: Ralph from Pixabay

For related blog posts by Angela, go to:

Categories
FAQs

What Do I Have in Common with Kittens, Puppies and Babies?

cats

A strange question for me to ask when I don’t have fur, don’t run after balls, and am not a newborn. Nonetheless kittens, puppies and babies do share a common adjective with little people. Cute!

At 71 years of age it doesn’t sit well when someone calls me cute. It usually happens when strangers see me for the first time. They’re taken aback by my height of 40 inches. Exclamations of how cute I am are exaggerated when I’m riding my mobility scooter especially if my husband and I are riding tandem.

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Being called cute is nothing new, but has been more frequent in recent weeks. It happens when visiting my husband in hospital and rehabilitation facilities where I’m surrounded by unfamiliar faces. As staff congregate just before a shift change, I often overhear them saying, “oh, she’s so cute.” In one-on-one encounters, I’m told to my face, “you’re so cute.”

So why does this bother me?

It’s certainly better than being called the “m” word or some other pejorative term. And based on the smiles that go along with their assessment of my appearance, I deduce that the cuteness label comes from my small size being attractive or appealing to them. At least this is better than being called cute for behavior that is shrewd, annoying or smart-alecky.

In the scheme of things, it’s not a big deal, and I don’t lose any sleep over it. But after checking the Merriam-Webster dictionary definition of cute, I confirmed that my irritation is well founded. The definition based on appearance hones in on my being childish, youthful, or delicate. None of these descriptors are accurate or acceptable!

In chapter one of the first book in my dwarfism trilogy, Dwarfs Don’t Live in Doll Houses, I wrote at length about the importance of being treated according to my age as both a child and teenager. Now as an adult, I am compelled to reject the cute adjective that risks my being subject to responses reserved for children. I don’t want to be patted on the head, picked up, cuddled, or have my cheeks squeezed. I imagine if I stuck around long enough one of these “admirers” would be tempted to do any one of these things.

Even more significant is the damage being done to the Little People community. Accepting the cute label, could stop us being taken seriously as adults in line for a job, apartment, or car purchase, for example. Who would hire a lawyer with babyish characteristics?

To cap it off, adults with dwarfism have no interest in stealing the scene in the way kittens, puppies and babies are used in movies and advertising. Our desire is to be accepted in society’s mainstream as equal contributing members. Our appearance should not limit our opportunities for inclusion as competent adults. Please help make this happen by resisting the temptation to call an adult Little Person cute.

Image credit: Roland from pixabay. https://pixabay.com/illustrations/cats-nature-cute-animal-soft-8743206/

To learn more about Angela’s blog and dwarfism memoir trilogy–

  • ALWAYS AN ADVOCATE: Champions of Change for People with Dwarfism and Disabilities
  • PASS ME YOUR SHOES: A Couple with Dwarfism Navigates Life’s Detours with Love and Faith 
  • Dwarfs Don’t Live in Doll Houses

–go to https://angelamuirvanetten.com

Categories
God's protection

Helene Revives 20-Year Old Hurricane Memories

The cataclysmic devastation and losses caused by Hurricane Helene are shocking and overwhelming. We pray and support all those working to recover from this unprecedented disaster. Our 20-year memories of Hurricanes France and Jeanne help us relate!

Hurricane Frances—a Category 4 with winds from 131-155 mph—was forecast to hit Stuart, Florida in October 2004. We sheltered at home with five guests. In preparation for losing power, we had extra food, water, batteries, gas for the grill, and cash. We ran water in the tub and had the pool as a reservoir for flushing toilets and taking birdbaths in the sink. We did our part to prepare and trusted in God’s mercy, compassion, and faithfulness. (Lamentations 3:22-23.)

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Stuart took a direct hit from Hurricane Frances—our unwelcome guest for almost two days. We listened to the weather reports huddled around a battery powered television. Exhaustion kept us from following meteorologist recommendations to take the dog for a walk during the four-hour eye of the storm at 1:00 a.m. Sleeping was a better option—besides, we don’t have a dog.

We thanked God for bringing us safely through the storm and especially for weakening Frances to Category 2 winds from 96-110 miles per hour. We only had minor soffit damage and some downed trees, while older homes had major roof damage, as well as blown-out walls and windows. Trees and branches littered most streets and yards, and a daylight curfew was in effect. We couldn’t get to work, had no phone service for five days, and no power or running water for a week. Without air conditioning, we dripped perspiration and sleep was scarce.

To our shock, Hurricane Frances was a dress rehearsal for Hurricane Jeanne two weeks later. Jeanne was another direct hit and a Category 3 hurricane with winds from 111-130 miles per hour.The fierce winds slamming into the house were louder than Frances and caused the six sheltering with us to pause frequently to watch the sliding glass doors wave along their tracks. We had serious doubts about whether the house would hold up. But we trusted God as our refuge and fortress. (Psalm 91:2.)

In contrast to Hurricane Frances, our household was wide-awake during Hurricane Jeanne’s eye. We all went outside to view the damage and wonder at the contrasting calm. Robert and two guests swam in the pool to cool off. We praised God when we came through unscathed and the roof and porch screen remained intact. We lost soffit, trees, and the water softener lid. A neighbor found a stray lid in his yard and Robert was happy when it fit our tank. We were among the 97% of county residents who lost power and, once again, we went several days without phone service, or running water.

The 14 billion dollars in property damages caused by hurricanes Frances and Jeanne are light compared to Helene’s estimate of 30 plus billion dollars. And we were blessed that most lives were spared. Let’s pray that Helene is not followed by Hurricane Milton brewing in the Gulf of Mexico!

Image credit: https://pixabay.com/photos/key-west-florida-hurricane-dennis-86025/

This post is a condensed excerpt from the third book in my dwarfism memoir—ALWAYS AN ADVOCATE: Champions of Change for People with Dwarfism and Disabilities, Chapter 5, Destructive Forces and Direct Hits, https://angelamuirvanetten.com/always-an-advocate/.

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Categories
Disability Rights

Register to Vote

Vote

Are you registered to vote? National Voter Registration Day on September 17, 2024 is a good day to check. If you’re thinking why bother, read on to find out why voting matters and how voters with disabilities are protected.

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/

E ─ EQUAL access to facilities and equipment is required. This includes the same 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.

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G ─ GUIDE your vote with background information from an organization you trust.

I ─ IDENTIFY issues that are important to you and vote accordingly.

S ─ SEIZE the opportunity to voice your opinion in a way that counts.

T ─ TOUGH choices in troubled times is no excuse for not voting.

E ─ EXERCISE your right to vote and see change happen.

R ─ RESPECT for a voter’s pace and space is given.For example, election workers are trained tospeakwith a typical voice volume, tone and age appropriate subject matter and to allow voters to move at their own pace.

T ─ Tear through the trial of long lines, or people not wearing masks, and vote early or by mail.

O ─ OUTNUMBERthose with opposing views by casting your ballot.

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

In the 2018 midterm election, 20% of voters either had a disability or lived with someone who had a disability? Vote and be sure that our powerful voting bloc is heard.

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!

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

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

Image Credit: ELLE RITTER from Pixabay

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Categories
Work

Common Sense Job Accommodations Needed to Lower 25-Year High

work conference coordinator

The Americans with Disabilities Act (ADA) requires employers to provide reasonable accommodations for employees with disabilities. Despite this mandate being in effect for more than a generation, 29,000 plus charges of disability discrimination were filed in 2023. The Equal Employment Opportunity Commission (EEOC)—the agency responsible for enforcing ADA employment cases—reports this statistic as a 25-year high!

Following this shameful record, EEOC General Counsel Karla Gilbride lamented:

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“The ADA has been the law of the land for nearly 35 years, but unfortunately many qualified individuals with disabilities still aren’t getting the common-sense accommodations they need in order to do their jobs and be fully included in the workplace.”

I 100% agree; accommodating a person’s disability is a matter of common sense! Long before federal law required employers to provide reasonable accommodations, I received two accommodations: one I needed, one I did not. Onsite parking was the accommodation I did need since I couldn’t walk the distance from the public parking lot. Even though onsite parking was reserved for managers, the problem was solved when a manager who did not drive to work allowed me to park in her space.

The accommodation I did not need mysteriously appeared one day in the bathroom—the installation of a kindergarten height toilet designed to accommodate my height of 40 inches! I was transported into the fantasy land of Goldilocks and the Three Bears: one for papa bear (wheelchair height), one for mama bear (regular height), and one for baby bear (my height).

Although I had been on staff for several months, I had to ask, “What does the company think I’ve been doing when I needed to use the bathroom?” No doubt the accommodation was well intentioned, but it made for good employee policy manual material: “Always ask the person with a disability before making an accommodation.” To top it off, the baby bear toilet was too low and actually more difficult for me to use.

I was able to avert another employer misstep when a rear entrance renovation was in progress. After learning that a security card reader was being installed, I met with the project manager to ensure that the reader was set at a height I could use independently. He told me not to worry the reader would be set at 48 inches as required by the accessible section in the building code. However, I told him this was too high for me and the reader needed to be set at 42 inches. It was common sense for me to make my need known before the employer installed the reader six inches above my reach. Speaking up before installation meant the accommodation did not cost the employer any extra money.

Other common sense, zero cost accommodations included: (1) removing the legs from my desk; (2) adding an extension to the cord on my office window blinds; (3) using the freight elevator to the cafeteria; and (4) preparing an emergency evacuation plan for a safe exit from the seventh floor.

What common sense job accommodations have you requested?

You may also want to read:

“PASS ME YOUR SHOES: A Couple with Dwarfism Navigates Life’s Detours with Love and Faith” by Angela Muir Van Etten, https://angelamuirvanetten.com/pass-me-your-shoes/

For additional resources go to:

Categories
Accessibility

ACCESSIBLE MEDICAL DIAGNOSTIC EQUIPMENT (MDE)

Agency Guidance Now a Mandate

Exam table

People with disabilities continue to face barriers to getting medical care because of inaccessible Medical Diagnostic Equipment (MDE). Barriers can include exam tables with heights that cannot be adjusted, mammography machines that require a person to stand, or weight scales that do not accommodate wheelchairs. These barriers result in inequities and exclusion from basic health services for individuals with disabilities, contributing to poor health outcomes.

Twice I have written blog posts on inaccessible MDE. Remember my question on April 19, 2021:

“Does anyone hear the call to advocate for making accessible MDE mandatory?”

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How about the question and answer in my March 18, 2022 post:

“So where do we go to file a discrimination complaint? The answer is NOWHERE.”

Three years later, I’m excited to report that two federal agencies—Health and Human Services (HHS) and the United States Department of Justice (DOJ)—have adopted “Standards for Accessible MDE” developed by the Architectural and Transportation Barriers Compliance Board (Access Board). This is monumental news! The Standards are no longer mere guidance, but are enforceable federal law under section 504 of the Rehabilitation Act or Title II of the Americans with Disabilities Act (ADA)!

HHS was the first agency to adopt the Access Board’s “Standards for Accessible MDE on May 9, 2024” when it adopted the 2017 edition which allowed a low transfer height of 17 to 19 inches. However, the Access Board revised the accessible MDE Standard on July 25, 2024 to specify a low transfer height of 17 inches for MDE used in the supine, prone, side-lying, and the seated position. Although HHS has indicated its’ intent to adopt the update, until this happens the 17-inch mandate is not enforceable.

On August 9, 2024, the DOJ issued a final and enforceable rule under ADA Title II to improve access to MDE for people with disabilities. The rule clarifies how public entities that use MDE, like hospitals and health care clinics operated by State or local governments, can meet their obligations under the ADA. As Assistant Attorney General Kristen Clarke, Civil Rights Division, DOJ, announced:

“Thirty-four years after passage of the ADA, people with disabilities should not have to forgo needed medical care due to inaccessible medical diagnostic equipment.”

Highlights of the DOJ rule requires the following of State and local government entities:

  • Beginning on October 8, 2024, all MDE that state and local government entities purchase, lease, or otherwise acquire must be accessible, until the entities have the required amount of accessible MDE.
  • Although not every piece of existing MDE is required to be accessible, entities must ensure that their services, programs, and activities that use MDE are accessible to individuals with disabilities.
  • Entities that use examination tables and weight scales must have at least one accessible examination table and weight scale by August 9, 2026.
  • Entities must have staff qualified to operate accessible MDE.

ALERT: On September 5, 2024, from 2:30–4:00 p.m. (ET), the Access Board will provide an overview of its’ July 26, 2024 final rule on accessibility standards for MDE. See https://www.accessibilityonline.org/ao/schedule/.

You may also want to read:

“Nondiscrimination on the Basis of Disability; Accessibility of Medical Diagnostic Equipment of State and Local Government Entities.” Civil Rights Division, U.S. Department of Justice. August 9, 2024. https://www.federalregister.gov/documents/2024/08/09/2024-16889/nondiscrimination-on-the-basis-of-disability-accessibility-of-medical-diagnostic-equipment-of-state.

“Fact Sheet: New Rule on the Accessibility of Medical Diagnostic Equipment Used by State and Local Governments.” Civil Rights Division, U.S. Department of Justice. August 08, 2024. https://www.ada.gov/notices/2024/08/08/mde-fact-sheet/

“U.S. Access Board Issues Final Rule Setting Low Transfer Height for Certain Medical Diagnostic Equipment.” Access Board. July 26, 2024. https://www.access-board.gov/news/2024/07/26/u-s-access-board-issues-final-rule-setting-low-transfer-height-for-certain-medical-diagnostic-equipment/

“Standards for Accessible Medical Diagnostic Equipment.” Architectural and Transportation Barriers Compliance Board (Access Board). July 25, 2024. https://www.federalregister.gov/documents/2024/07/25/2024-16266/standards-for-accessible-medical-diagnostic-equipment

“Nondiscrimination on the Basis of Disability in Programs or Activities Receiving Federal Financial Assistance.” Health and Human Services Department. May 9, 2024. https://www.federalregister.gov/documents/2024/05/09/2024-09237/nondiscrimination-on-the-basis-of-disability-in-programs-or-activities-receiving-federal-financial

Angela Muir Van Etten. “MEDICAL DIAGNOSTIC EQUIPMENT: Proposed for State and Local Government Entities.” Blog post, January 15, 2024. https://angelamuirvanetten.com/medical-diagnostic-equipment-proposed-for-state-and-local-government-entities/

Angela Muir Van Etten. “Tackling Inaccessible Medical Equipment, Part II.” Blog post, March 18, 2022. https://angelamuirvanetten.com/tackling-inaccessible-medical-equipment-part-ii/

Angela Muir Van Etten. “Tackling Inaccessible Medical Equipment.” Blog post, April 19, 2021. https://angelamuirvanetten.com/tackling-inaccessible-medical-equipment/

Categories
Open

Outtakes from “Pass Me Your Shoes”

Pass Me Your Shoes

The celebration of National Book Lovers Day on August 9th started me thinking about the outtakes cut from a draft manuscript to manage book length. Readers miss out on engaging material. But authors often save the outtakes for later use. This post includes a few outtakes from “Pass Me Your Shoes.”

Bobby hesitated to set our wedding date on October 31st because itwas Halloween. I convinced him it wouldn’t be an issue because New Zealand doesn’t celebrate Halloween. Although there was no hint of Halloween on our wedding day, I didn’t think about our wedding anniversary being in America on Halloween every year thereafter. Now we have to find a way to avoid getting caught up in the annual celebration of superstition and occult themes.

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# # #

One summer we encountered an access problem that was resolved through ingenuity not confrontation. We were sleeping in a friend’s guesthouse when a persistent, high-pitched noise woke us. We finally identified the smoke detector on the ceiling as the culprit. It was time to change the battery! There was no escaping the noise and it would have been an assault on our host’s hospitality to call him at one o’clock in the morning. We had to solve this problem on our own.

It was an involved process. We dragged the dining room table to the bedroom door, tilted it on end and maneuvered it through the doorway without gauging a hole in the wall. We set the table back on its legs and lifted a chair onto the table. Robert climbed onto the table and then onto the chair. I held the chair while Robert disconnected the battery. Sleep was now possible.

# # #

Robert was excited when his niece asked if her cat, Kendall, could live with us. All he had to do was convince me. It’s not that I dislike cats so much as they make me sneeze and I don’t like getting pawed or scratched. I agreed for Kendall to move in on two conditions: (1) Robert take full responsibility for all Kendall’s needs; and (2) the bedroom would be off-limits.

                          Kendall had everything going for him: personality, gorgeous fur, amazing eyes, and a contortionist’s ability to squeeze into unlikely places. There was one big problem—Kendall refused to use the litter box. Robert consulted cat lovers and tried three different box designs and litter types. However, after three weeks of Kendall toileting anywhere but in the litter box, Robert couldn’t take it anymore. He found him a home with a devoted lover of Himalayan Persian cats.

# # #

Chocolates for a Little People of America fundraiser were being delivered to our address. But the truck driver could not navigate our community without churning up lawns and breaking sprinkler heads. So Robert met the driver outside the gate. He was amazed to see a huge semi-truck and trailer and dumbfounded when the driver opened the back door. Our few boxes of chocolate were the only cargo!

And for the whole story, read the second book in my dwarfism memoir trilogy, “PASS ME YOUR SHOES: A Couple with Dwarfism Navigates Life’s Detours with Love and Faith,” https://angelamuirvanetten.com/pass-me-your-shoes/.

Categories
Little People of America

Keynote Speaker at Star Spangled Awards Banquet

Banquet Keynote Promo

In January this year I received an unexpected invitation from Little People of America (LPA) President Eileen Norman. I was blown away when she asked if I was available to be the keynote speaker at the LPA annual banquet in Baltimore, Maryland on July 4th. Wow! What an honor.

Ordinarily I would have jumped at the opportunity. However, health issues had kept attending the Baltimore conference off our schedule. Robert was still immersed in physical therapy after his hospital discharge three months earlier and I was recently hit with severe painful arthritis in my right shoulder. Even though I couldn’t get my head around how I would pull this off, I agreed to pray and think on it before giving an answer a week later.

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In a scheduled phone meeting on February 7th, Eileen satisfied my curiosity as to how my name came up as a potential banquet speaker. I was humbled when she said she had grown up looking at my book “Dwarfs Don’t Live in Doll Houses” on her parent’s bookshelf and believed she was standing on the shoulder of giants. Her vision for the keynote was for members to see our common mission as advocates and for each of us to find our part to play. In order to help people find their role she wanted me to share LPA’s advocacy history and challenge this generation to get involved. I was hooked.

After organizing family caregivers to stay with Robert in my absence, I accepted the invitation to be the keynote speaker. Even in February I knew Robert’s health didn’t allow him to travel, but by March his health took a huge step down. He was in the hospital for ten days and acute rehab for 21 days, followed by in-home therapy three days a week, and outpatient kidney dialysis three times a week. So I waited until we settled into our new routine before finalizing my decision.

But Robert, family, and friends encouraged me to proceed with Baltimore conference plans. And so I did.

Banquet keynote on stage

In May, I made a flight reservation, ordered 110 “Always an Advocate” books to give away at the banquet, requested an accessible room with a roll in shower and lowered bed, and accepted the LPA Historian’s invitation to videotape an oral history one hour interview. The bonus was the historian’s agreement to reserve Wheelchair Accessible Van rides to and from the airport to the hotel.

With all my extra duties involving Robert’s care, the preparation of my 20 minute speech was spread out over several weeks. In recognizing that banquet guests do not sign up to be lectured and would hope to be entertained, I wrapped my points into bite size packages with lots of stories. I avoided details that take too much concentration.

It remains to be seen how many people rise to my challenge to “be an advocate for positive change.” But judging by the many favorable comments I received after the speech and the number of people lining up to have their gift book autographed, I’m hopeful that LPA members will care enough to do something, remember change is possible, and go out together to change the world.

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