Author: Angela Van Etten

Poinsettias and Christmas

December 12th is National Poinsettia Day in the United States. The date marks the death of Joel Roberts Poinsett, an American botanist, physician and the U.S. Ambassador to Mexico from 1825 to 1829. He shared his love for the Poinsettia when he sent cuttings from Southern Mexico to his home in Charleston, South Carolina.

In Mexico, where the plant is called La Flor de la Nochebuena (Flower of the Holy Night), Poinsettias have featured in the nativity procession—the Fiesta of Santa Pesebre—since the 17th century. Mexican legend has it that a little girl, too poor to buy a gift to present to the Christ child at the nativity scene on Christmas Eve, gave baby Jesus weeds she picked from the side of the road. Given in love, the weeds were transformed into the beautiful red stars of the Poinsettia.

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And so the Mexican association of Poinsettias with Christmas continued in America. On one level, the red leaves fit right in with all things Christmas—red nosed reindeer, Santa, bows, ornaments, and candles. On another level, red symbolizes love and the blood of Christ. Whether you are enchanted by Poinsettias for their legendary charm, Christian symbolism, or their decorative beauty, they are now one of the most popular plants in the world. Annual sales are 90 million units and the global retail impact is nearly one billion dollars. In the United States most of the $250 million in retail sales occur in the six weeks leading up to Christmas.

Over the years, I’ve been the beneficiary of Poinsettias in the prelude to Christmas for various reasons. Last December when recovering from eye surgery for a hole in the macular and a partially detached retina, my aunt blessed me with gorgeous Poinsettias in a twin basket.

This year when hosting a chapter meeting for Little People of America, I received a beautiful Poinsettia as a hospitality gift from one of the members.

I’m also enjoying the Christmas decorations at church that incorporate both red and white Poinsettias.

So in this season of Christmas giving, it’s time for me to bless family and friends with Poinsettia gifts. No need to worry if they have one already. The more Poinsettias they get the more magnificence they have to delight in.

So what part do Poinsettias play in your Christmas?

Global Inclusion of People with Hidden Disabilities

Post author By Angela Van Etten
Post date December 5, 2022
1 Comment on Global Inclusion of People with Hidden Disabilities

Graphic courtesy of https://theweco.com/wp-content/uploads/2019/08/Invisible-Disability-logo.jpg

How can 15 per cent of the world’s population be counted as a minority when it numbers one billion? Yet people with disabilities do fit minority classification due to routine denial of equal access to society and services. We are often excluded from the built-environment, education, employment, health care, transportation, et al.

For three decades, the United Nations has highlighted global disability inequities with the annual observance of the International Day of Persons with Disabilities (IDPD) on December 3rd. The goal is to promote understanding of disability issues and mobilize support for the dignity, rights and well-being of persons with disabilities.

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This resolve was strengthened in 2006 when the United Nations Convention on the Rights of Persons with Disabilities (CRPD) recognized accessibility and inclusion of persons with disabilities as fundamental rights.

The 2022 IDPD theme of “transformative solutions for inclusive development recognizes the role innovation plays in fueling an accessible and equitable world.” Some organizations have narrowed the scope of this year’s theme to the vast majority of disabilities that are hidden, such as: chronic fatigue, diabetes, hearing loss, learning difficulties, mental health disorders, speech impairments, low vision. Their “Not All Disabilities are Visible” slogan brought to mind the Hidden Disabilities Sunflower global program which has recently emerged as an innovative way to include people in public places that need additional support, help or a little more time.

The Sunflower program began in 2016 at the United Kingdom’s Gatwick Airport as a way to support travelers with hidden disabilities. Travelers wearing a green lanyard with a yellow sunflower send a subtle signal to staff self-identifying as someone who may need assistance. Staff are trained to (1) provide clarifying instructions, (2) keep family members together, (3) read departure boards, (4) give more time to prepare at check-in and security, (5) find a place to sit and rest, or (6) deliver whatever else is needed.

By 2018, the Sunflower program spread to all major UK airports and rail providers. It also expanded to anywhere people meet, such as: banks, charities, entertainment and sports venues, hospitals, insurance companies, retail establishments, universities, schools and colleges, and the like.

Global recognition began in 2019 with the opening of the Hidden Disabilities Sunflower online store and sharing on Facebook. In early 2020, the program expanded to other international venues and is now available at airports in 24 countries, including: Australia, Canada, Denmark, Italy, Japan, the Netherlands, New Zealand, Peru, the UK and the United States.

My reservation about the program is how the Sunflower lanyard tags the person as vulnerable and needy. On one hand, I question why a person with hidden disabilities should have to wear a special lanyard to get help. On the other hand, I understand that those of us with visible disabilities get offers of help without even asking. But is it inclusion if the person wearing a lanyard is set apart and made to feel different? What do you think?

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 14^th 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.

Disability Rights FAQs Medical

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

Post author By Angela Van Etten
Post date November 21, 2022
No Comments on 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 12^th 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:

Genetic Discrimination. National Human Genome Research Institute, National Institutes of Health. https://www.genome.gov/about-genomics/policy-issues/Genetic-Discrimination.
Fact Sheet: Genetic Information Nondiscrimination Act. Equal Employment Opportunity Commission. https://www.eeoc.gov/laws/guidance/fact-sheet-genetic-information-nondiscrimination-act.
Genetic Information Non-Discrimination Act Charges (filed with EEOC) Fiscal Years 2010 – 2021. Equal Employment Opportunity Commission. https://www.eeoc.gov/data/genetic-information-non-discrimination-act-charges-charges-filed-eeoc-includes-concurrent.

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/.

International Transportation

Air Travel Shocks

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/.

Accessibility Disability Rights

MAKING PUBLIC COMMENTS: Time Wasted or Well Spent?

Post author By Angela Van Etten
Post date November 7, 2022
2 Comments on MAKING PUBLIC COMMENTS: Time Wasted or Well Spent?

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/.

Celebrations International

UK Travel: Challenge, Church, and Cuisine

Post author By Angela Van Etten
Post date October 31, 2022
3 Comments on UK Travel: Challenge, Church, and Cuisine

Frequent flyer miles and promotion of the first book in my dwarfism memoir trilogy, Dwarfs Don’t Live in Doll Houses, led to free flights and two nights’ accommodation in Worthing, England. It was October 1990 and we were guest speakers at a weekend conference of the Restricted Growth Association, one of the English organization equivalents to Little People of America.

Our ninth wedding anniversary prompted us to extend the stay for another week. We prepaid a rental car to avoid giving advance notice of our stature. This wasn’t deceptive, but rather timing the disclosure to coincide with our arrival at the service desk. As expected, when we presented our prepaid voucher at the rental agency we were asked to explain how we would drive the car.

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Robert showed the manager our pedal extensions and seat cushions. Despite obvious doubts, management reluctantly allowed Robert to install the extensions. Word of our presence spread like wildfire and Robert artfully transformed this curious audience of agency mechanics into a team of helpers. They became just as determined as Robert to attach the pedal extensions safely. He probably met every mechanic on the lot before the extensions were successfully installed two hours later.

Then it was my turn. The manager insisted on driving around the block with me to be sure we were not an insurance risk. Robert appointed me to drive since I grew up driving on the left side of the road in New Zealand. I was sleep-deprived having traveled through the night and was relieved to gain the manager’s approval to drive off the lot and finally be on our way.

We had an ambitious itinerary that included the conference, Salisbury Cathedral, Stonehenge, Bath, Stratford-on-Avon, the Lake District, and London. Most of our accommodations were in bed-and-breakfast private homes. We felt the access challenges were worth it to soak in more British culture and cuisine. Did it really matter that we had to leave our bedroom door ajar because we couldn’t reach the door handle?

We spent more time at Salisbury Cathedral, built in 1220, than at Stonehenge which is anywhere from 3,500 to 5,000 years old. The rock formations were impressive, but we preferred the cathedral laid out in the shape of a cross, the 404-foot spire designed to lift our thoughts upwards to God, and seeing one of the four surviving original texts of the 1215 Magna Carta preserving the right to a fair trial and free church.

In Bath, we saw the Roman influence in AD 75 England. Here they built baths in the only mineral hot springs in the country. Robert handled the modern-day parking problem in the historic section of town by flagging down an officer who put a sign in our car window: Driver and passenger are both disabled from U.S.A. but do not have disabled badge.

After these and many other experiences, we left England with a strong taste for a return visit one day. But we couldn’t leave the country without sitting down to a traditional English afternoon tea.

This post was adapted from Chapter 10, Season of Travel, 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/.

DWARFISM SENSITIVITY & AWARENESS

Post author By Angela Van Etten
Post date October 24, 2022
2 Comments on DWARFISM SENSITIVITY & AWARENESS

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:

Can I Help You? Angela Muir Van Etten blog. June 6, 2022. https://angelamuirvanetten.com/can-i-help-you/
What Should I Call You? Angela Muir Van Etten blog. November 2, 2020. https://angelamuirvanetten.com/what-should-i-call-you/
How Old Are You? Angela Muir Van Etten blog. August 24, 2020. https://angelamuirvanetten.com/?s=How+Old+Are+You%3F

Work

Lessons From My 40-Year Law Career

Post author By Angela Van Etten
Post date October 10, 2022
2 Comments on Lessons From My 40-Year Law Career

New Zealand bar admission with Nana & Dad

Law was my chosen profession. After earning law degrees and multiple bar admissions in New Zealand and the United States, I discovered that such credentials are not an automatic entry into the work force. Many prospective employers can’t imagine a client having confidence in the ability of a 40-inch-tall lawyer. Thankfully, I had enough imagination for both of us.

My entry into a legal career preceded nondiscrimination disability laws. Hence employers freely expressed flimsy excuses and abhorrent advice:

You won’t be able to appear in court because the legal robe will be too long!
Judges won’t wait for you to run up and down the stairs to get instructions from a client in custody.
Get a job in government service where you’ll work behind closed doors and won’t need to deal with the public.

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Undeterred by discriminatory barriers, I looked for employers focused on skills not appearances. To be sure I wasn’t screened out before a job interview, I gave no hint of my height when calling or submitting a resume. It wasn’t a matter of hiding my size, rather a question of timing. It’s easier to dispel preconceived notions face-to-face.

Although not all employers are open to persuasion as shown in one interview. The attorney leaned back into his leather chair, put his feet on the desk, and his only questions were unrelated to the job or my experience. Clearly he was not considering me for the position. With nothing to lose, I challenged him for the questions he didn’t ask. This startled him into a bolt upright position followed by one open-ended query. My answer did not dint his prejudice, but at least he learned his bigotry was exposed.

Several months after I began working for an employer obligated by federal law to provide reasonable accommodations, a kindergarten height toilet mysteriously appeared in the bathroom. 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). I had to ask, “What does the company think I’ve been doing all this time when I needed to use the bathroom?” The incident sparked an addition to the employee policy manual: Always ask the person with a disability before making an accommodation!

October is National Disability Employment Awareness Month. The range of law jobs I engaged in during my 40-year law career demonstrates a few of the many directions a law degree can take:

Barrister and solicitor in a legal aid court practice.
Legal writer and project editor of disability civil rights and other law books for Thomson Reuters.
Staff writer on religious liberty issues for the Christian Law Association.
Advocacy Specialist and Coordinator for the Coalition for Independent Living Options.

My first thought of becoming a law correspondent for a media outlet never happened, but my interest in writing featured for the majority of my career. So don’t be afraid to pursue your passion and don’t succumb to the bigots who ignore your talent. This post includes excerpts from books I and II in 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/.

Transportation

Add Teeth Not Candles for Birthday of Air Carrier Access Act (ACAA)

Post author By Angela Van Etten
Post date October 3, 2022
2 Comments on Add Teeth Not Candles for Birthday of Air Carrier Access Act (ACAA)

Wheelchairs and scooters are not baggage; they are like legs to those whose mobility depend on them.

Yet over 20,000 wheelchairs were reported lost, damaged or destroyed since December 2018, the first month airlines were required to report numbers to the U.S. Department of Transportation (DOT). This represents nearly 1.5 percent of mobility devices loaded as cargo and, in January 2022, was double that of baggage! This breaks down to about 29 a day.

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And according to the Paralyzed Veterans of America September 2022 survey, almost 70% of those traveling with a wheelchair or scooter have had their device damaged. Although the Airline Passengers with Disabilities Bill of Rights, published in July 26, 2022, mandates that the airline compensate up to the original purchase price of the wheelchair or device, this falls far short of redressing the hardship experienced by device users.

Wheelchairs are not bought off the store shelf; they are customized to fit the user’s body and medical needs.

As one disability advocate explained, “You can’t just say, ‘The chairs’ broken, here’s another chair.’” A loaner wheelchair or scooter will lack the custom features needed to maintain health and safety. In a most egregious case, Engracia Figueroa, an amputee with a spinal cord injury died from a severe infection of a pressure sore that developed when she was using an airline loaner after they totaled her power wheelchair.

Repairs to damaged wheelchairs often take weeks or months to complete. The process involves an evaluation, a prescription, insurance approval, ordering parts, and making the repairs. In the meantime, the user loses mobility, independence, possibly the purpose of their trip, and maybe the ability to go to work or play their sport.

Wheelchairs are not simple technology; they are sophisticated, fragile, and should be handled with care.

Airlines often choke when asked to pay the original purchase price of the wheelchair or scooter. Some airlines have responded to passenger complaints about damages with low ball offers like 5,000 travel miles or monetary compensation of $125. In Figueroa’s case, it took months of fighting before the airline agreed to pay the $30,000 needed to replace her wheelchair. And yes, high tech power wheelchairs can cost more than some cars.

Under the ACAA passengers can’t bring private legal action against offending airlines. They’re limited to filing complaints with the airlines and the DOT. But only three times since 2018 has the DOT exercised its’ authority to fine an airline for ACAA violations, despite receiving about 30,000 disability-related complaints annually.

So on October 2^nd let’s give the ACAA a 36^th birthday to remember. Let’s jump start the Air Carrier Access Amendments Act of 2021 (H.R. 1696/S. 642) introduced by U.S. Senator Tammy Baldwin and U.S. Representative Jim Langevin, on March 9, 2021. Among other things, the bill increases penalties for damaged wheelchairs or mobility aids, gives air travelers the right to sue in court for damages, and requires better stowage options for assistive devices.

Please contact your representative today and ask for their support.