Month: October 2022

Categories
Celebrations International

UK Travel: Challenge, Church, and Cuisine

Afternoon Tea

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/.

You may also like prior posts:

“Read And Change Your Life For The Better.” Angela Muir Van Etten blog. September 5, 2022. https://angelamuirvanetten.com/read-and-change-your-life-for-the-better/

“Car Rental and Marriage Mulligans.” Angela Muir Van Etten blog. October 19, 2020. https://angelamuirvanetten.com/car-rental-and-marriage-mulligans/

Categories
Awareness Little People of America

DWARFISM SENSITIVITY & AWARENESS

Dwarfism Awareness band

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

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

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E ─ Equal treatment is expected:

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

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

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

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

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

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

T ─ Treat people with dignity and respect:

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

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

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

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

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

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

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

You may also like prior posts:

Categories
Guest Independence

To Boldly Go With a White Cane

white cane pic
Jody W. Ianuzzi, a mentor and advocate for blind people conveying a can do attitude towards vision loss.


Through the ages blind people have used a staff, walking stick, or cane to explore their environment. This all changed in 1921 when James Big from Bristol, England painted his walking stick white to make it more visible. The concept caught on when Rotary clubs and the BBC encouraged all blind people to use white canes for identification. The concept spread to France and, in the 1930s, to the United States where Lions clubs promoted the white cane to identify blind people. By the late 1930s, state laws were enacted to protect blind pedestrians.

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The next major advancement in cane mobility came after World War II when Richard Hoover used a long white cane to explore the environment along with a new method of moving the cane from side to side one step ahead of the traveler. This was the beginning of the Orientation and Mobility Specialist profession. Today O and M specialists teach young children to senior citizens how to use the long white cane and nonvisual environmental clues to negotiate around all kinds of obstacles. These techniques include listening for traffic and safely crossing the street.

In the past, blind people rarely traveled alone but now with the advanced O and M techniques blind people are able to travel independently with safety and dignity. The techniques have evolved but so have the canes. Historically the walking stick was made of wood. Now modern canes are made of carbon fiber and they are available with many different types of tips depending on the travelers preference. 

Blind adults who learned to use the white cane as a young child never knew a time in their life when they didn’t have the advantage of traveling with a long white cane. Other adults sometimes have an adjustment and resist using the white cane until they discover the freedom and independence it provides.

I was taught to use the white cane at age 16 when all of my friends were getting their drivers licenses. This was very difficult for me because I did not want to appear different from my friends. I also resisted using the white cane until I met other capable blind adults who could travel more freely than I could because they had great cane skills. I realized that I would rather travel as a competent blind person than try to fake being sighted and risk a serious injury. I no longer walked with my head down. Rather I held my head up high and walked proudly and quickly for the first time in my life!

In 1964, Congress recognized the importance of the long white cane in providing freedom and independence to blind people and passed resolution HR 753 declaring October 15 to be White Cane Safety Day across the United States. Every president since Lyndon Johnson has observed this date as White Cane Safety Day for all blind Americans. 

Now, a century after James Big painted the first white cane, blind people around the world can all go boldly with their long white canes!

Reference: https://www.njcounciloftheblind.org/brochures/history_of_white_cane.htm

For a subscription to my weekly blog on dwarfism and disability issues, go to https://angelamuirvanetten.com/blog/.

Categories
Work

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/.

Categories
Transportation

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

Airport

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 2nd let’s give the ACAA a 36th 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.

You may also like to read:

For a subscription to my weekly blog on dwarfism and disability issues, go to https://angelamuirvanetten.com/blog/.