Month: August 2021

Categories
Accessibility Celebrations

Access Hits and Misses in New York City

Decade Birthday Tradition

On August 30, 2015, Robert and I continued our decade birthday tradition with siblings and spouses.  This was my brother’s 60th so he chose the destination. Our flights from Australia and Florida landed all six of us in New York City for five days and a weekend with Greg’s daughter Holly who flew in from London.

Upon arrival at LaGuardia airport, Robert and I appreciated the help of the airport taxi dispatcher and a driver willing to load two scooters into his vehicle. We assured the driver that family would help him unload at our lodging. This was a better solution than scrambling to find an accessible taxi.

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Greg’s wife, Julie, had asked every conceivable question to ensure that our second floor Airbnb loft had an elevator and no stairs. We planned to come and go independently like the rest of our crew. But the booking agent overlooked the three-inch rise from the sidewalk into the building and the elevator was a far cry from accessible. But we were thankful that one scooter at a time could squeak through the narrow door into the small elevator car.      

We primarily navigated our way around Manhattan riding accessible city buses and the subway to stops with elevators. This eliminated any parking problems, unless you count the perturbed parking attendant who did not appreciate my photo op humor when I backed my scooter into a ground level space underneath a car on a second tier hoist.

Greg’s birthday dinner was fine dining with great décor, toasts, and God’s blessing. And his birthday gift from Deborah proved to be the highlight of the trip—tickets to the opening night matches of the US Open at the Billie Jean King National Tennis Center in Flushing Meadows, Queens.

The accessible seats in Arthur Ashe Stadium gave us an unobstructed view of the tennis court and were near the section where Serena Williams family and coach were seated. The challenge was getting to our seats. The volunteer elevator usher repeatedly let us out on the wrong level. This was a big deal because of the long wait for an elevator car with room for the scooter. (Yes, only one scooter this time as Robert is not a tennis fan.)

After enjoying two matches of top-tier players, we exited the stadium and moved with the masses to the subway about 1:00 AM. However, we were shocked to exit the train at our stop and find the elevator out of order! Thankfully, Greg and Rob carried my scooter up the stairs and Deborah and Julie helped me. The next day we learned that the UK tourist we met on the train the night before was also confronted by an out-of-order elevator at his station. His power wheelchair was too heavy to lift and he had to board another train, exit at Grand Central Station, and wheel back to his hotel on city sidewalks in the early hours of the morning.

Do you have an access vacation story to share?

This post is based on outtake material removed from “ALWAYS AN ADVOCATE: Champions of Change for People with Dwarfism and Disabilities” releasing on Amazon on October 8, 2021.

Categories
Medical

Adapting to Changes in Climate and Age

Aging queen

In July 2003, Robert was shocked when we landed in my homeland of Auckland, New Zealand. He’d been there before, but was not a fan of winter visits. The 50 degree Fahrenheit drop in temperature from Florida’s 90 to Auckland’s 40 revealed Robert’s dependency on indoor temperature control. Telling him that the drop was only 27.5 degrees in Celsius was no consolation. Robert compensated by using dad’s two-month supply of kerosene for the heater in only three days.

Despite being irritated by this unexpected depletion in his fuel supply, my father threw open all the windows to let some fresh air into the over-heated room. 

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Robert was shocked again. He had not learned how to adapt to New Zealand’s way of staying warm—only use a heater to take the chill off the early morning air and wear winter clothes inside.

When we flew to Sydney, Australia to visit my siblings and other family members, it was my turn to adapt. Shortly after a surprise 50th birthday celebration—where I was crowned the queen—I was rudely reminded of my advancing years. I fell and severely sprained my wrist the day before we flew home. I had one night to ice it, then fellow passengers across the Pacific suffered with me as I massaged my wrist with the penetrating and aromatic Goanna extra-strength heat cream. The healing process was impeded by the need to continue lifting myself on and off chairs, toilets, and in and out of the car.

I was also losing range of motion in my ankles. The pain interrupted my sleep, reduced my already limited walking distance, made stairs and curbs impossible to climb without a railing, and required avoidance of uneven surfaces like grass and gravel.

At the end of August, I went to a local orthopedist for x-rays. After looking at the images, he came into the room, was surprised not to see a wheelchair and amazed I could walk independently. He pronounced severe arthritis and prescribed a scooter and a lift to get it in and out of the car.

In September, I brought the x-rays to Dr. Mary Matejcyk, the same orthopedist who replaced Robert’s hips in 1997. She advised that the spontaneous fusion of my ankle joints was causing the pain. This sounds bad, but it was actually good news. Surgical intervention would be to fuse the joints and my ankles were doing this on their own. The only concern was that the ankles fuse in the right position for standing; thankfully, this appeared to be happening. When the fusion was complete the pain would end. And she was right.

Robert had no health incidents in 2003. However, he got quite a scare on the scales at the doctor’s office. The calibration on our home scale was off by seven pounds. We both admitted we needed to lose weight to reduce the stress on our joints.

So how were you reminded of National Senior Citizens Day on August 21st?

Read more about dwarfism issues in my dwarfism trilogy, https://angelamuirvanetten.com/books/.

Categories
Vacations

Water and Wildlife Camping

Camping in Mexico New York

My childhood summer vacations were spent camping in beach towns about a two hour drive from home. So in August 1990, I was up for a two hour drive to camp for the weekend with the New York Finger Lakes LPA chapter in Mexico, New York. But Robert’s idea of being ready to leave when I got home from work on Friday night was having a borrowed kayak strapped on top of the van with the help of two elderly neighbors. He had packed no food or camping gear!

As a result, we arrived at the camping ground after dark without a lantern and needed help putting up our tent.

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Despite the availability of cabins, we chose to rough it in a campsite with no electricity to be as close as you could get to the river without getting wet. On Saturday, Robert enjoyed kayaking in the river as I sat in my sun chair at the river’s edge half studying for an exam and half watching chapter members splashing around.

            Five years later, we camped in the Florida Everglades National Park. Robert’s family set up tents for the men and boys with a spectacular view of Florida Bay. I escaped the mosquitoes and flies by staying with Robert’s sister and cousin in a cottage with air conditioning, a bathroom, and kitchenette. Even though the campers laughed at us, they didn’t hesitate to visit for food and amenities.

Robert accepted that poisonous snakes made swimming inadvisable,but he ignored the if-you-don’t-bother-them-they-won’t-bother-you advice when confronted by a growling alligator. When the canoe he shared with his niece unexpectedly disturbed an alligator resting on an embankment, Robert tried to convince her not to paddle away until he got a photo. She had the sense not to listen to him.

We rang in the New Year of 1996 sleeping in a pup tent in New South Wales, Australia—one week camping with my sister Deborah and family at Myall Lakes; the other with my brother Greg and family at Kiama.

Myall Lakes included relaxing in the water, riding a Jet Ski, and sight-seeing the lakes in a boat. However, Robert’s Jet Ski joyride turned into terror and the scariest three hours in his life. He got lost; went numb in the cold water; his joints hurt from cutting through the waves; and the weeds clogged up the Jet Ski, twice. When he finally found his way, he was most upset to have missed seeing a huge goanna lizard take a leisurely stroll through our camping ground.

The rain dampened our plans at Kiama, but the tree frogs had a blast. Greg’s attempt to quiet them down at night by yelling and throwing cans was futile, albeit entertaining to watch. When our tent got soaked, we moved into the family tent. We amused ourselves reading, shopping, going to the movies, and playing cards. The weather cooperated enough for us to visit a wildlife park where we walked among and fed the kangaroos.

So tell me about your camping stories.

This post is excerpted from our camping experiences discussed in “Pass Me Your Shoes,” the second book in my dwarfism trilogy, chapter 10, Season of Travel; chapter 13, Family Highs and Business Low; and chapter 14, What a Difference Ten Years Makes. Buy links are available on my website at https://angelamuirvanetten.com/pass-me-your-shoes/.

Categories
Awareness Little People of America

Dual Donahue Dialogue Differences

Donahue LPA panel

A two-time guest of Phil Donahue, the father of daytime talk shows, I appeared on August 8, 1984 in Chicago and October 12, 1989 in New York City. In 1984, a producer asked Robert Van Etten, president of Little People of America (LPA), to name panelists; in 1989, a producer invited me to join a panel based on my many media interviews resisting dwarf tossing.

But what a difference five years makes.

In Chicago, the LPA panelists were honored guests in the historic and luxurious Drake Hotel. We joined LPA friends riding in a limousine to the studio, being pampered by hair and make-up artists and hanging out in the green room.

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Donahue talked with us before and after the show. He was playful with the kids and humbly kneeled in the center of our group photo. And we were treated to a post-show fine dining luncheon at the Drake.

In New York, I stayed in a nondescript hotel and my limo ride to the studio was with panelists I didn’t know. We did not see Donahue before or after the show and the food platters in the green room substituted for any post-show meal.

In Chicago, we had no concerns about the program veering off in the wrong direction. We trusted the show would educate the studio and TV audiences about LPA and dwarfism. Our diverse panel was well equipped to answer questions on marriage, parenting, education, employment, medical and other issues. There was no pitting one group against another.

Not so in New York. In order to maintain market share, Donahue had gradually shifted from thoughtful conversations to more sensational topics. For example, in a 1987 show on cross-dressing, he wore a woman’s skirt! So what would I encounter on a show on the violent entertainment of dwarf tossing and roller derby in which the loser is tossed into a pool with alligators?

I was thrown into a lopsided debate on New York State’s proposed ban on dwarf tossing in licensed establishments serving alcoholic beverages as the only panelist supporting the ban! A dwarf-tossing business owner, promoter, and dwarf “tossee” all opposed the ban. At least there was a medical researcher who spoke generally about the negative effects of violent entertainment.

And then there was the audience. In Chicago, it was supportive and included 16 LPA members, and four of Robert’s relatives. The reception was warm, friendly, and open to learning about little people. In New York, the reception was mixed. Although the majority appeared to favor a dwarf tossing ban, a sizeable and vocal group opposed infringing on the dwarf’s freedom of choice to engage in dangerous activity.

Clearly it was a no-brainer for LPA to do the Chicago educational show. But not knowing how Donahue would handle the dwarf tossing controversy in New York was a risk I had to take. Thankfully, the exposure helped propel the bill to ban dwarf tossing. Soon after the program, legislators began signing on as bill co-sponsors.

This post is a behind the scenes look at Donahue talk show appearances discussed in chapter 2—President Robert: The Second Term—and chapter 11—Biting the Legislative Dust—in “Always an Advocate,” the third book in my dwarfism trilogy, releasing on October 8, 2021. Updates are found at my website, https://angelamuirvanetten.com/always-an-advocate/.

Categories
Disability Rights Little People of America

Ask the Author About “Always an Advocate”

Author photo

What is the book about?

A demonstration of advocacy’s power to end discrimination and disrespect towards people with dwarfism and other disabilities in volunteer leadership, entertainment, public transportation, public buildings and facilities, emergency operations, voting, homeowner associations, social security disability benefits, and schools.

How did you pick the title?

A high school student recently asked me a question following my disability sensitivity presentation. It wasn’t the typical question a person with dwarfism gets—about clothes, driving, the height of my siblings, or if I have children. No, the question was, “How long have you been an advocate?” I had to think about that one for a moment; then it dawned on me. I’ve been an advocate for as long as I can remember. Always. After toying with various title ideas, Always an Advocate emerged as the best title choice. 

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Why did it take three books to tell your story?

Dwarfs Don’t Live in Doll Houses, the first book in my dwarfism trilogy, talks about my perspective on life as a single person. Because the book was published in 1988, after I was married, people were disappointed not to read about my whirlwind international romance with Robert Van Etten. We used to say, wait for book two.

My original intent was for Pass Me Your Shoes to be one book. However, the draft was too long and appealed to two different markets. As a result, I separated the manuscript into books two and three: Pass Me Your Shoes telling our personal marriage story and Always An Advocate focusing on advocacy.

Do you plan to write another book?

No! But then again, my original plan was two books so plans can change. For now, I’m quite content to write articles and weekly blog posts at https://angelamuirvanetten.com/blog.

Are there any photos in the book?

Yes, there are 17 photos supporting the text in multiple chapters.

When will the book be available?

Amazon is currently taking pre-orders on the e-book.

The official publication date is October 8, 2021 in recognition of October 8, 1997 when the six-inch reach barrier was broken in state and local building codes. Lowering the unobstructed side-reach standard from 54 to 48 inches in new or altered buildings and facilities made ATMs, gas pumps, elevators—everything activated with a push, pull or turn—accessible to people with dwarfism and other disabilities.

In what formats will the book be published?

E-book, print, and audiobook.

Who narrates the audiobook?

I narrated the audiobook myself in several two hour sessions with the support of a sound engineer.

Where can I get more information about the book?

Visit my website at https://angelamuirvanetten.com/books and Amazon’s book page to see the description, editorial reviews, product details, and biography. If you click on follow the author you’ll get updates as they become available. 

Do you have questions for the author?

Please reply with your questions and I’ll answer them in a future post.