Category: Little People of America

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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.

Categories
Accessibility Little People of America

Measure Up for Independence

Measure Up

Independence is highly valued and celebrated by nations, people groups, and individuals. For some, independence relates to coming of age and, for others, it’s a prolonged struggle with many battles along the way. For people with dwarfism, independence in the built environment is a prolonged and ongoing struggle. The Measure-Up Campaign was one of the many battles Little People of America (LPA) won in our fight for independence.

When LPA applied for membership on a national committee setting building code standards in accessible and usable buildings and facilities in 1994, we had one primary objective—to change the standard to lower equipment with operable parts to be within the reach of people with dwarfism. We asserted our right to independently use ATMs, self-serve gas pumps, elevators, and the like.

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LPA knew that our request to amend the standard to lower operable parts on equipment by six-inches, from 54 to 48 inches, was like firing the first shot across the bow. We anticipated resistance from the affected industries represented on the committee. And the push back was immediate. Committee members returned fire with a call for more research. As LPA’s representative on the committee, I quickly learned that a committee call for research was “code” for delay and denial.

Instead of waiting for the committee to conduct the research, LPA took action to answer the questions:

  • Is 48 inches the right height?
  • How high can people with dwarfism reach?
  • And what effect will this have on people with other disabilities?

The 1995 LPA national conference in Denver, Colorado was perfectly timed for gathering the data to answer these questions. And so the LPA Measure-Up Campaign was born.

Robert Van Etten (a rehabilitation engineer and former LPA president) partnered with Dr. Ed Steinfeld (an architect, university professor, and Committee member) to design a reach range survey. One hundred subjects would have made the survey statistically valid. This number was easily surpassed when the Measure-Up Campaign captured the measurements of 172 adult little people. The reward of a Hershey chocolate kiss may have induced some to line up for measurements of their height, arm extension, eye height, and vertical reach, but the desire to independently use ATMs was a greater motivation. The results were documented in multiple tables and graphs in the study called the “Anthropometric National Survey of Adult Dwarfs of 1995.”

Within weeks of the survey, I returned to the Committee meeting armed with research results that pulled the rug out from under those determined to keep the status quo. The data documented that if the unobstructed side-reach standard was reduced to 48 inches about 80% of people with dwarfism would be able to reach ATMs and everything else activated with a push, pull, or turn.

Winning this key battle moved committee members beyond sympathy and forced them to face the need to break the six-inch reach barrier. People with dwarfism and other reach disabilities were one step closer to functioning independently in public places.

This post is adapted and excerpted from Chapter 15, Breaking the Six-Inch Reach Barrier, in “ALWAYS AN ADVOCATE: Champions of Change for People with Dwarfism and Disabilities” releasing in October 2021.

Categories
Little People of America

How My Life Would Be Different Without LPA

Cups

Image by congerdesign from Pixabay

  • I would not have married a President.
  • Local LPA communities would not have welcomed me when I moved from New Zealand to Virginia to Maryland to Ohio to New York to Florida.
  • I would not have enjoyed so much hospitality from LPA members opening their homes for meetings.
  • I would not have been a guest in so many modified LP kitchens and seen how to modify my home for greater comfort and safety.
  • I would not have been on the advocacy teams that defeated dwarf tossing in Chicago, Florida, and New York.

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  • Conservative Rush Limbaugh and Liberal Howard Stern would not have criticized me in a radio broadcast on the same day for suggesting that Little People have a “cause.”
  • I would not have talked to so many reporters.
  • I would not have attended 28 national conferences in 20 states and four countries.
  • I would not have received an LPA education scholarship.
  • River rafting in the afternoon and modeling my wedding dress in the evening would never have happened.
  • I would never have read so many great books written by people with dwarfism.
  • I would never have used a scooter to extend my endurance and long term joint maintenance.
  • ATMs and credit card readers on gas pumps at my local gas station would still be out of my reach.
  • I would have earned fewer frequent flyer miles.
  • I would have stayed in fewer hotels.
  • I would have missed the free advice from medical experts in dwarfism.
  • My T-shirt wardrobe would be deficient.
  • I would have missed meeting other Little People with my diagnosis.
  • I would have got a lot more sleep.
  • I would have fewer friends.
  • My photo albums and newspaper clippings would not feature Little People.
  • I would not have met so many celebrities.
  • I would not have met so many Little People from all over the world.
  • I would not have seen an LP toddler grow from jumping up and down on my water bed to graduating from college, and getting married.
  • Free time would be a reality not a concept.
  • I would not have spent so many weeks of my life in meetings and become proficient with Robert’s Rules of Order.
  • I would not have read LPA Bylaws or cared enough to try and change them.
  • I would not have laughed and cried so much.
  • The opportunity to encourage parents to raise their child with dwarfism with the same expectations and boundaries as their other children would have been lost.
  • I would not have learned the lessons that come from being in the majority.
  • I would have missed being in the LP melting pot of diagnoses, gender, ethnicity, nationality, economic and faith backgrounds.

This post was adapted from a 2005 LPA Today article. For additional insights, go to Amazon.com and order your copy of my book—PASS ME YOUR SHOES: A Couple with Dwarfism Navigates Life’s Detours with Love and Faith—a new release during Dwarfism Awareness Month in October 2020.