Month: November 2022

Categories
Celebrations

Thankful Through the Years

Happy Thanksgiving
Happy Better Wiser, https://www.pinterest.com/HappyBetterWiser/

How did inflation affect your Thanksgiving holiday? Possibly your gathering was smaller. Perhaps the rise in food prices meant fewer dishes on the table, no second helpings, or chicken instead of turkey. Worse yet, maybe you joined the 25% of Americans who skipped the holiday altogether.

Yet whatever our circumstance, it helps to maintain a spirit of gratitude not just at Thanksgiving but always. In reviewing how successful I’ve been on this front, I ran a word search in the manuscripts of my dwarfism memoir trilogy, https://angelamuirvanetten.com/books/. I found derivatives of the word thankful and grateful 54 times! Here’s a sampling of what I found:

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  • I couldn’t buy clothes off the rack. Thankfully, our family had an excellent dressmaker.
  • I’m grateful for my education. I was not kept out of school or sent to a school for children with “handicaps.”
  • Thankfully, I found employers who were not fazed by my size.
  • Thankfully not all children find pleasure in ridicule.
  • [Robert and I] were extremely grateful in 1982 when Little People of America granted me an educational scholarship.
  • When the fire alarm went off on our first day in [a 14th floor] apartment in 1983, Robert called to see if we should evacuate. Thankfully, the car explosion in the parking garage was quickly controlled and we were able to stay put.
  • In 1984, I prepared for the [Ohio bar] exam with endless hours of study, but had not prepared for a blizzard. My fear was that my pre-ordered cab would be a no-show. I thanked God when cabs came for me.
  • At age 36, I had severe pain and immobility in my left shoulder. Thankfully, after three months of [treatment], I was pain-free and had improved range of motion.
  • I was grateful our house cleaners were there when we got home from Robert’s outpatient hernia surgery in 1985. He definitely needed a stronger arm than mine to lean on to get from the car to the bedroom.
  • In 1997, Robert prepared himself for hip replacement surgery by snorkeling with a school of barracudas in Key Largo, Florida. Thankfully, he did not look like a menu item.
  • Moving to Stuart [Florida] in 1998 put us in the market for a church. Thankfully, it didn’t take long to feel comfortable at Tropical Farms Baptist Church.
  • The radio station cancelled the 2002 dwarf-tossing contest. But thankfully, the DJs threat to sue the state of Florida was stymied when the Department of Business and Professional Regulation removed the likelihood of successful litigation.
  • In 2003, I was caught in a 25% staff layoff. Despite the uncertainty that comes with unemployment I was thankful.
  • In 2014—one year after my aortic valve replacement surgery—the flowers were blooming, my electrocardiogram was boring, and my echocardiogram was very good. I gave thanks to the Lord for His goodness.

“Do not be anxious about anything, but in everything by prayer and pleading with thanksgiving let your requests be made known to God.” ∞ Philippians 4:6, New American Standard Bible.

HOLIDAY DEAL: Use promo code TRIO22 and order a personally autographed paperback trilogy set for a 50% savings i.e. a $50 value for only $25 (includes sales tax, shipping and handling). Hurry while supplies last and enjoy a surprise free gift. Email your order to Angela at angela@angelamuirvanetten.com.

Not in the mood to wait, order your Kindle or audio edition on Amazon. Go to https://angelamuirvanetten.com/books/ for trilogy details: Dwarfs Don’t Live in Doll Houses, PASS ME YOUR SHOES: A Couple with Dwarfism Navigates Life’s Detours with Love and Faith, and ALWAYS AN ADVOCATE: Champions of Change for People with Dwarfism and Disabilities.

Categories
Disability Rights FAQs Medical

Why Are You So Short? Is the Answer in the Genes?

GINA sig ceremony
White House photo by Eric Draper. 
President George W. Bush Signs H.R. 493, the Genetic Information Nondiscrimination Act of 2008 in the Oval Office. May 21, 2008.

Every day little people are asked to explain why they are so short. The answers given are often more amusing than educational:

  • I was born this way, what’s your excuse?
  • My mother puts me in the dryer every night.
  • Cigarettes stunted my growth.
  • I didn’t eat all my vegetables.
  • I was six-feet-two-inches when I went swimming and four feet when I came out of the water. [Note, the prankster had to retract this ‘short story’ told to a young boy before he was willing to take a bath.]

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On the more serious side, I often say, “God makes people in all shapes and sizes.” But I went way over the head of one young girl when I answered her with a question, “what color are your eyes?” After telling me they were blue, I asked “why aren’t they green? She shrugged. I anticipated this reply and said, “neither do I know why I didn’t grow.” Although this exchange did nothing to help her understanding, it did move me closer to incorporating genetics into my explanation of why I’m short.

Geneticists have identified almost 400 distinct types of dwarfism. And just as genetics determine eye color, two different genes determined that I would be a dwarf with Larsen’s syndrome—Filamin B and CHST3. Even so, knowing the specific genes for my dwarfism type doesn’t adequately explain why I got genes that resulted in my short stature. So let’s pivot to a more important question about the explosion of genetic information.

Is it legal to use genetic information against people whose genes identify a disability? November 21st—the 12th anniversary of the effective date of the Genetic Information Nondiscrimination Act (GINA)—makes this a timely question. The good news is that GINA was enacted to protect people from genetic information discrimination in (1) health coverage and employment as it relates to family history of a disease or disorder; (2) genetic tests of individuals, family members, or a fetus; or (3) any request for or receipt of genetic services, participation in genetic testing or genetic counseling by an individual or family member. 

Title I of GINA prohibits health insurers from using genetic information to determine if someone is eligible for insurance or to make coverage, underwriting or premium-setting decisions. However, GINA does not cover insurance policies for long-term care, life, or disability.

Title II of GINA prevents nonmilitary employers with 15 or more employees from using genetic information in employment decisions like hiring, firing, promotions, pay, and job assignments. GINA also protects employees or applicants by prohibiting employers from (1) requiring or requesting genetic information and/or genetic tests as a condition of employment; (2) intentionally requesting or obtaining genetic information; (3) harassment based on genetic information; or (4) retaliation for action taken against activities made unlawful by GINA. However, provided confidentiality of genetic information is maintained, an employer is allowed to obtain genetic information based on narrowly-drawn inquiries for medical information in connection with a reasonable accommodation request, or for voluntary participation in an employee wellness program.

 For more information on GINA, go to:

This post is based in part on examples found in book I of my dwarfism memoir trilogy: Dwarfs Don’t Live in Doll Houses, https://angelamuirvanetten.com/dwarfs-dont-live-in-doll-houses/.

Categories
International Transportation

Air Travel Shocks

Expired Passport

As the plane taxied to the airport terminal in Christchurch, New Zealand (NZ), my heart almost stopped when I looked at Robert’s passport. It had expired! It never occurred to me that his American passport was only good for five years since my NZ one was good for ten. Robert’s view out the plane window might be all he was going to see of NZ on our first trip back since being married. How was I going to tell him?

I quietly handed him his passport and decided it was best for Robert to hear the news from an official. This way his reaction would be completely unrehearsed. As expected, Robert was suitably dismayed when the immigration officer asked him if he knew his passport had expired.

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The officer asked us to step aside while he called the main immigration office in the capital of Wellington. While we waited for an answer on Robert’s entry status, he asked if I would return to the United States with him. The reality of his situation set in when I answered, “No.” Although the trip would not be the same without Robert, I was unwilling to miss the family reunion.

Thankfully, the officer returned with good news. Robert could enter the country on the condition that he went straight to the US Consulate office in Christchurch to apply for a new passport.

A few years later, Robert and I were in transit to Sydney, Australia to celebrate my sister Deborah’s birthday on December 24th. But instead of being denied entry into the country, Robert was blocked from boarding the plane in Los Angeles. His passport was current, but this time he was missing an Australian visa! Again, it never occurred to me that he needed a visa since he didn’t need one to enter NZ.

We were held over one day while Robert got his visa at the Australian Consulate’s office, arriving just before the office closed early for the Christmas break. I was frustrated to miss Deborah’s birthday, but at least we arrived in time to celebrate Christmas together for the first time in seven years.

Another fiasco occurred when we missed a connecting flight on our way to the funeral of Robert’s mother, Irene. It was infuriating because we were at the departure gate on time. Unfortunately, during the 30-minute maintenance delay, we left the gate to get something to eat. Even though we returned to the gate within half an hour, the plane had already departed! Apparently, the plane was ready sooner than expected and we didn’t know you can’t hear boarding calls in restaurants. Despite the 12-hour delay, we still made it to the funeral.

Thankfully not all our airport stories involve trauma. On our return flight from Baltimore after my Aortic Valve Replacement surgery, we were greeted with good news at Palm Beach International airport. Upon arrival, baggage staff delivered two scooters and one hearing aid—the aid Robert didn’t realize he had left on the scooter seat when we boarded in Baltimore.

This post was drawn from multiple chapters in book II of 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
Accessibility Disability Rights

MAKING PUBLIC COMMENTS: Time Wasted or Well Spent?

Self-Service Kiosk

Hope for people with dwarfism was rekindled on November 16, 1999. The federal Access Board published a Notice of Proposed Rulemaking (NPRM) to update the ADA Accessibility Guidelines (ADAAG). The embers ignited because the NPRM included a proposal to break the six-inch reach barrier in new or altered buildings and facilities by lowering the reach from 54 to 48 inches. If approved, ATMs, gas pumps, elevators—everything activated with a push, pull or turn—would become accessible to little people.

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But wait. Wouldn’t making comments on this issue be a waste of time? Only six years earlier, Robert and I were among the 700 Little People of America (LPA) members and allies who responded to the Access Board’s call for public comments on the exact same issue. And our hopes for equal access were dashed on July 15, 1993 when the banking industry persuaded the Access Board to allow operable parts on ATMs to remain out-of-reach at 54 inches.

Yet even though our letters did not result in a rule change in 1993, our time wasn’t wasted. Our letters attracted the attention of the ICC/ANSI A117.1 Committee on Accessible and Usable Buildings and Facilities. And, in 1994, LPA was invited to join this Committee that writes a building code standard which becomes law when adopted by a municipality or State. As a committee member, LPA successfully advocated to break the six-inch reach barrier in the 1998 edition of the ANSI A117.1 access code which subsequently influenced the Access Board to incorporate the 48-inch reach standard in ADAAG’s NPRM.

LPA members, other disability organizations, and myself as LPA’s delegate responded to the call for public comments on the NPRM updating ADAAG. Five years passed before we could answer the question, was it time well spent? But when the final rule was published on July 23, 2004, the answer was an unequivocal yes! Euphoria barely described the joy of finally seeing the 48-inch standard accepted in the 2004 ADAAG federal standard which applied uniformly across the nation.

But this is not a case of one and done. Almost 20 years later, people with dwarfism and disabilities have a long way to go before achieving equal access. Two words make this very clear—self-service kiosks. These inaccessible machines are popping up in retail stores, hotels, restaurants, health care facilities, all over the place. And because they’re not regulated by the ADA, system advocacy is once again a critical need. We need to do something.

The good news is that the federal Access Board recognizes the problem and has issued an Advanced Notice of Proposed Rulemaking to address it. The Board isn’t ready to propose a rule, but seeks input on what the rule should require. November 21, 2022 is the deadline for submitting public comments to docket@access-board.gov with a subject line reading, ATBCB—2022—0004.

So let’s use our time well again and make comments about what changes are needed to make self-service kiosks accessible to little people. Let’s build on our past success.

For further reference, go to see https://www.adatitleiii.com/wp-content/uploads/sites/25/2022/10/Kiosk-ANPRM.pdf.  

You may also like: “Making the Impossible Happen.” Angela Muir Van Etten blog. October 4, 2021. https://angelamuirvanetten.com/making-the-impossible-happen/ This post is based on events discussed in book II of my dwarfism memoir trilogy: ALWAYS AN ADVOCATE: Champions of Change for People with Dwarfism and Disabilities, https://angelamuirvanetten.com/always-an-advocate/.