Month: March 2024

Categories
Little People of America

Running for Office

LPA President ave
President Angela with Board member

Election season is in full swing in American politics. When I look back 20 years I am reminded of the time I was persuaded to run for national office. No, not as a representative of the people in the United States, but as a Vice President of Little People of America (LPA). March 31, 2004 was the day I announced my candidacy, one day before the April 1st deadline.

My husband, Robert, completely got my attention when he said I should run for president. I was reluctant to run for any office. It meant shelving any work on our marriage memoir, Pass Me Your Shoes, for more than two years. Also, after six months

Want to subscribe to receive blog updates sign up today!

of unemployment, I was finally in the running for two jobs. I couldn’t imagine taking on the LPA presidency at the same time as starting a new job.

I could see the need for an elected officer who would temper passion with patience, value staff and volunteers, work cooperatively as a team member, and promote a fair and equitable process. After much prayer and discussion with Robert, my dilemma about running for president was resolved when Jacob stepped forward as a presidential candidate. But I did put the book on hold and decided to run for VP of membership. Although I had never been on the LPA Executive Committee, I had board experience as parliamentarian, a District 4 proxy, and an administrative assistant during Robert’s two terms as president in the 1980s.

Jacob and I recruited Rachel as a senior vice-presidential candidate who shared our campaign values of respect, integrity, accountability, and inclusiveness. Our motto was, “Vote for people who value people.” We held campaign meetings in online chat sessions. Supporters distributed our flyers at spring regional meetings and we built a campaign website called lpa4people.org. The campaign took off as we posted our platforms, biographies, endorsements, and commentaries. We prepared for a contested election and were surprised when the likely contender announced he would not be running for office.

I received good advice from a former LPA President, Gerald Rasa. He recommended defining, prioritizing, and resolving issues; including people in the process and praising them for their work; and conducting myself with humility. Gerald’s advice hit the mark as I entered a turbulent time in LPA leadership. There were so many issues to resolve! In my two years on the Executive Committee, four different people served in the office of President! I dubbed this as the Presidential relay. I ran the last leg after the board voted me in as President on November 13, 2005.

As President until July 2006, I determined to finish the work the original Executive Committee began in 2004. In pursuit of Solomon’s wisdom, I added his words as part of my email signature paragraph. For example, in February 2006, my 220 outgoing emails closed with this quote:

Pleasant words are a honeycomb,
Sweet to the soul and healing to the bones.
∞ Proverbs 16:24, New American Standard Bible

            LPA primarily runs on volunteer hours. It’s important to support and encourage those willing to serve.

This post is a condensed version of excerpts in Chapter 4, Galvanize the Group and Heal the Breaches and Chapter 7, President Angela: Last Leg of Relay in book three of my memoir trilogy: “ALWAYS AN ADVOCATE: Champions of Change for People with Dwarfism and Disabilities,” https://angelamuirvanetten.com/always-an-advocate/

Categories
FAQs

What’s It Like To Be Little?

ICU wall phone

Goodreads, the world’s largest site for readers and book recommendations, was a natural place for me to post details on my dwarfism memoir trilogy. In the Ask the Author section a self-professed genuinely curious person posed the question, What’s It Like To Be Little? She prefaced her query with “You don’t have to answer this if you don’t want to because I don’t want to be offensive.”

Even though I didn’t take offense, I worked hard not to cause offense with my answer. I thought it was an odd question given that my writings discuss what life is like for a Little Person and she wrote her question on

Want to subscribe to receive blog updates sign up today!

a web page which made this clear. So I politely said: your curiosity which inspired the question is what prompted me to write my memoir. The best way for you to find out what it’s like to be little is to read one or more of the books in my dwarfism trilogy. I put the onus back on the questioner to find out what it’s like.

Typically I see my days playing out as for a person of any size. That’s because my environment has been modified so that I can function independently and interact with people who are accustomed to seeing me. I can reach almost everything in my custom built home, drive  a modified vehicle, and mostly go to places where people know me.

But this month has been totally different. For three weeks in March my husband Robert has been in the Emergency Room, Intensive and Progressive Care Hospital Units, and an Acute Care Rehabilitation Hospital. This experience has reminded me that being little is distinctive.

It starts in the parking lot where I drive the entire lot looking for a disabled space with an access aisle on which to lower the ramp of my Wheelchair Accessible Van. It continues when I proffer my photo ID card to hospital security and need help to get it scanned. Speaking up when someone jumps the line can cause an angry response. And ICU visitor access is delayed while I find someone to reach the wall phone to request entry.

Communicating with medical personnel is challenging when they stand too close and talk over the top of me. I had to ask the ICU critical care doctor pressing me for consent to intubate Robert to talk to me face to face. He willingly came down to my level—first by crouching and then by sitting on a chair.

Watching Robert in a hospital bed that could not be lowered enough for me to greet him with a kiss or help feed him his meals was frustrating for both of us. But in the rehabilitation unit they located a bed that lowers enough for me to sit on the bed and reach Robert.

Successful people with dwarfism are adept at requesting accommodations that level the playing field and advocating for acceptance and environmental changes.

For further information go to:

Categories
Dignity

Florida Law Against Dwarf Tossing Defended

scale

Despite being called one of the ten worst inventions of the millennium—alongside the Spanish Inquisition, advertising, and nuclear war—dwarf tossing threatened to return to Florida in 2001. Dave the Dwarf, a Tampa radio personality, filed a lawsuit asking a federal court not to enforce the 1989 Florida law that banned dwarf tossing in licensed establishments.

The lawsuit claimed that the law was unconstitutional and irrelevant to any valid public purpose. The plaintiff pleaded the right to start a dwarf-tossing business. The radio station used the litigation to launch a successful media stunt and was shrewd

Want to subscribe to receive blog updates sign up today!

enough to pit Little People of America (LPA) against Dave the Dwarf even though the named defendants in the lawsuit were the Florida governor and Division of Alcoholic, Beverages and Tobacco. The station titillated its audience by negatively portraying Dave as a piece of luggage to be tossed and LPA as a militant group interfering with his right to work.

Although the lawsuit was dismissed in February 2002, there was no hearing or ruling on the constitutionality of the law. Rather, the judge found he had no jurisdiction to hear the case because the agency rules to enforce the dwarf-tossing law had been repealed. As a result, the radio station planned a dwarf-tossing event. LPA in Florida resisted exploitive activity reminiscent of circus sideshows and put pressure on the state to publish enforcement rules before the event.

Meanwhile, John Stossel’s “Give Me a Break” segment on ABC’s 20/20 program aired on March 8, 2002. My husband and I naively believed that Stossel would fairly present both sides of the dwarf-tossing debate. He did not. After watching the 20/20 segment, I was so incensed that I sat up until the early hours of the morning writing a response called, “John Stossel Compromises Dwarfs in Name of Freedom.”

People encouraged us to keep fighting for the right thing and stand up for our beliefs. Barbara Walters—an acclaimed broadcast journalist—won the praise of many viewers when she nailed Stossel’s libertarian view by comparing the dwarf-tossing law to society’s ban on suicide, prostitution, and drug dealing.

Emboldened by the Stossel report and the judge’s dismissal of the lawsuit, the Tampa radio station planned a dwarf-tossing event for April 5, 2002. The Florida Division of Alcoholic Beverages and Tobacco responded to my complaint about the planned event on LPA’s behalf and warned the bar that dwarf tossing violated Florida law.

The bravado ended when the radio station cancelled the dwarf-tossing contest. But the DJ was livid and threatened to sue the state of Florida again. Thankfully, his plan was stymied when the Florida Department of Business and Professional Regulation published a Notice of Proposed Rulemaking that became effective on August 21, 2002. The penalties for violating the dwarf-tossing law included license revocation or suspension, a civil fine not to exceed $1,000, or both.

Image credit: Clker-Free-Vector-Images from Pixabay

This post is a condensed version of Chapter 12, Give Me A Break in “ALWAYS AN ADVOCATE: Champions of Change for People with Dwarfism and Disabilities” by Angela Muir Van Etten, https://angelamuirvanetten.com/books/

Categories
Transportation

Relief In Sight for Anguished Airline Passengers with Wheelchairs

cry

More than 10,000 wheelchairs and other mobility devices are mishandled or damaged every year during air travel! The United States Access Board is a reliable source for this appalling statistic. Tears, injuries, missed vacations and events, and irreparable harm cannot be compensated with apologies, loaner wheelchairs, delayed and inadequate repairs, or flight credits. So finally after years of intensive advocacy by disabled travelers and disability organizations, relief is in sight.

Want to subscribe to receive blog updates sign up today!

On February 28, 2024, the U.S. Department of Transportation (DOT) issued a Notice of Proposed Rulemaking (NPRM) to strengthen 14 CFR Part 382, the rule implementing the Air Carrier Access Act (ACAA). The safety and dignity of passengers whose mobility depends on wheelchairs and scooters is proposed in the following rule provisions:

  • Mandating annual, hands-on training for airline staff and contractors who (1) physically assist passengers with transfers to and from aircraft seats, aisle chairs, and personal wheelchairs, and (2) handle passengers’ wheelchairs.
  • Outlining actions that airlines must take to protect passengers when a wheelchair is damaged during transport.
  • Allowing passengers to choose the company that will repair or replace their wheelchair if it’s mishandled with the airline covering the costs.
  • Clarifying that (1) airlines must provide prompt, safe, and dignified assistance to all passengers with disabilities; and (2) damaging or delaying the return of a wheelchair is an automatic violation of the ACAA.
  • Making it easier for DOT to hold airlines accountable for failing passengers who use a wheelchair.

Comments on the Notice of Proposed Rulemaking must be received within 60 days of the date it is published in the Federal Register (publication is imminent at https://www.federalregister.gov). Comments can be filed on www.regulations.gov, giving the docket number DOT-OST-2022-0144, the Regulatory Identification Number (RIN 2105-AF14), and agency name i.e. the U.S. Department of Transportation.

If you’re perturbed that the NPRM doesn’t go far enough, remember that regulations must stay within the boundary of the statute which authorizes them. So this is a good time to also promote passage of the Air Carrier Access Amendments Act of 2023 (H.R. 1267 and S.545) which U.S. Representative James Langevin has introduced every year since 2015. The bill which has yet to gain traction in the United States House or Senate would do the following for airline passengers with disabilities:

  • Expand protections and require airlines to meet minimum accessibility standards for safe and effective boarding and deplaning, seating accommodations, accessible lavatories, and stowage for wheelchairs and assistive devices.
  • Require the DOT to prescribe regulations setting minimum accessibility standards for new and existing aircraft, airport facilities, websites, and kiosks.
  • Establish a procedure for filing disability-related discrimination complaints with the DOT.
  • Assist passengers through a toll-free hotline or other electronic method.
  • Authorize the Department of Justice (DOJ) and aggrieved passengers to bring civil actions for discrimination against an air carrier.
  • Mandate the issuance of fines to airlines that violate the laws protecting people with disabilities in air travel, and to refer patterns of discrimination to the DOJ.

Want relief? Submit comments and get your congressional representatives to support the ACAA Amendments.

Photo credit: Markus Kammermann from Pixabay

You may also want to read: