Month: February 2023

Categories
Awareness Disability Rights

Tips for Achieving Positive Media Coverage

Microphone

The media is often the public’s first introduction to little people. The image portrayed will be what sticks in people’s minds when we meet in person. As a result, it’s critical for people with dwarfism to conduct interviews that generate positive pieces in print, digital, online, radio, or television outlets. The following headlines show this can be done:

  • “What’s so bad about being little?”
  • “Short is pretty good: Children with dwarfism learn to stand tall in world proportioned for others.”
  • “Honest Reaction Beats Being Ignored says Little Person Lawyer.”
  • “Little People Group Wants To Show Size Isn’t Everything.”

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During my 40 years in public service as a legal professional and volunteer advocate, I’ve been interviewed almost 11 dozen times on issues related to organizations of people with dwarfism and disabilities, my Winston Churchill Fellowship, marriage, employment, dwarf tossing, public transportation, and publication of my dwarfism trilogy memoir. This experience informs the views expressed in this post.

Before deciding to do a media interview, I consider the reputation of the media outlet. If I don’t believe my message will be fairly presented, I decline the interview. This doesn’t mean I avoid forums with an opposing viewpoint, rather I strive for an equitable hearing. However, I do steer clear of outlets inclined to sensationalism and erroneous reporting, such as the paper with this headline about a doctor: “He turns Dwarfs into Giants.”

After agreeing to be interviewed, I focus on my objective—to educate the public or advocate change for people with dwarfism and disabilities. Preparation is the key to meeting this goal. I must be ready to share my message with reporters who don’t know what questions to ask and push back against reporters who ask questions based on a presumption that our lives are miserable. Unless loaded questions about our problems are turned around, little people will continue to be plagued by headlines like this:

  •  “The tall problems of little people.”
  • “Little People Have Big Problems.”
  • “Little People Have Big Woes.”

This is not to say I won’t acknowledge that little people have problems. We do. But to avoid selective reporting on the negative side of my experience, I only mention difficulties that increase the likelihood of effecting change or improving understanding. For example, I often talk about attitudinal barriers that limit my activity. If I mention physical limitations it’s in the context of barrier removal—reasonable accommodations in public facilities or modifications in private spaces.

To avoid the risk of being viewed as sympathy seekers, I stress our similarities, abilities, and equality. It’s better to discuss how we are alike, what people with dwarfism can do, and our equal rights as integrated members of society. This is reflected in the following headlines:

It’s also important to give a quick tutorial on ‘four letter words’ in disability land, —defect, victim, burden, afflicted, abnormal, midget.

For more of my writings, go to https://angelamuirvanetten.com, subscribe to my weekly blog, and find buy links to my dwarfism memoir trilogy.

Categories
Relationships

Presidential Impact

Presidents Day

The New Zealand Embassy in Washington, D.C. was the meeting place of two presidents representing two countries in March 1981—not the White House or Camp David. The venue was chosen because the Little People of New Zealand president asked to meet the Little People of America President. And in an extraordinary turn of events, the meetings continued in civilian quarters for another 41 years as a married couple! 

As husband and wife, we now look back on Presidential influences in our lives. On January 20, 1981, President Ronald Reagan ordered a retroactive hiring freeze that eliminated 1800 federal jobs, including Robert’s position as a communications engineer with the Access Board.

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Because the national media covered Robert’s story as a hardship case, I had the advantage of boning up on his background before we met. And with his job frozen, Robert had the time to be my tour guide during my five-week visit.

The Lincoln Memorial was our first stop. President Abraham Lincoln’s statue towered above us at more than six times our height. We were inspired by the display of Lincoln’s words from the Gettysburg address: all men are created equalbecause we shared a life mission to achieve equality for little people and others with disabilities.

On July 26, 1990, President George H.W. Bush advanced this goal when he threw open the door to equality for people with dwarfism and disabilities by signing the Americans with Disabilities Act.

In October 1993, President William Clinton inspected a three-foot-high Lego replica of the White House with Secretary of Labor, Robert Reich. The president joked that the four-foot-ten secretary “could almost live in there.” Kyle Smith, a New York Post reporter, sought my reaction to Clinton’s quip. My answer reported in Smith’s article—“Labor Sec is a living doll, says big Bill”—made me a target of two polar opposite radio personalities, Howard Stern and Rush Limbaugh. Both Stern and Limbaugh took umbrage with my saying the joke was inappropriate and didn’t help our cause. Limbaugh said, “What cause?”

After 17 years living in America as a legal permanent resident alien, I tired of sitting on election sidelines. I wanted to vote. And on January 17, 1998 after news broke of President Clinton’s alleged White House sex scandal with a White House intern, I knew I needed to vote. So on June 26, 1998, I applied for citizenship. And the basis for my decision was confirmed in December 1998 when President Clinton was impeached for perjury and obstruction of justice. My application was approved and my naturalization ceremony followed in Miami, Florida on September 25, 1999.

President Franklin D. Roosevelt’s directive to hide his dependence on leg braces and a wheelchair for mobility was reversed on January 11, 2001. A life-sized statue showing FDR in his wheelchair was added at the FDR Memorial entrance and accurately demonstrates that his strength was in his leadership not his legs. Disability doesn’t limit what people can accomplish and should not be hidden. 

So how have American Presidents impacted your life?

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Categories
Relationships

Marriage Vows and Valentines

Valentine

Our love journey did not begin on Valentine’s Day. In February 1981 we didn’t even know each other. Rather we made our love commitment in marriage vows on October 31, 1981:

We will stand by each other no matter what happens, respecting each other’s individuality, understanding the other’s needs, accepting our changes, and enjoying our love until death parts us.

Nonetheless, in February 1982, I did expect our first Valentine’s Day together to be special.

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I gave my husband Robert a romantic card depicting a cartoon of a woman with curly hair lying under the bedcovers with an empty pillow next to her. The message read: “If you’d like to be my Valentine, you know where to find me. All my love and kisses.” Instead tears flowed when Robert had no card to give me. Of course in the long haul, our marriage vows were much more important.

We could not have imagined what “standing by each other no matter what happens” would involve—adjusting to life as an alien resident living thousands of miles from families in New Zealand, Australia, and Florida; qualifying to practice law in America; multiple moves across state lines chasing jobs as a two career couple; employment discrimination and unemployment; running a sole proprietor business; betrayal by a trusted friend and embezzlement; LPA leadership; surgeries for cataracts, detached retina, hips, and aortic valve replacements; workaholism and marriage counseling; car accidents; ice storms and hurricanes. Yet with God’s help we kept this vow.

Our ability to “respect each other’s individuality” is continually challenged. Take, for example, Robert’s idea of being ready for a camping trip was a kayak strapped on top of the van without packing any food, bedding, or camping gear. Also, I often didn’t appreciate Robert’s humor. Like when he forwarded me an email listing bumper stickers he thought were funny. Only a couple caused me to even crack a smile. One sticker reminded me of our road trip experiences—He Who Hesitates Not Only is Lost, but is Miles from The Next Exit.

And I was not amused when I missed an I-90 exit when driving home from Boston, Massachusetts to Rochester, New York. Robert took great delight in repeatedly singing the chorus from “M.T.A.,” a song about a man trapped on the Boston subway.

Well, did he ever return?
No, he never returned and his fate is still unlearned.
He may ride forever ‘neath the streets of Boston,
And he’s the man who never returned.

On the flip side, Robert wasn’t amused when his photo in the gallery of national officers published in the 1983 LPA Boston convention brochure was of him sporting a snorkel and goggles in contrast to the formal attire of the other officers. I had sent the editor two photos—the funny one for the editor’s personal pleasure and a serious one for publication. The editor shared the joke with everyone.

            Forty years later in our retirement years we are now learning to accept our changes, and enjoy our love until death parts us.

This post was adapted from book II in Angela Muir Van Etten’s 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/. 

Categories
Medical

Heart Health Habits and Helps

Heart Health
Image: February is Heart Health Month by SusanWilkingHoran.com

As I approach February 19, 2023—the tenth anniversary of open heart surgery to implant my top hat mechanical aortic heart valve—I remain eternally grateful for God’s interventions leading me to a diagnosis of aortic stenosis and Johns Hopkins Hospital for life-saving surgery. This experience makes me tender towards the February heart days reserved to save more lives and promote heart healthy living: 

  • American Heart Month.
  • February 1 to 7, Women’s Heart Week.
  • February 3, National Wear Red Day® to raise and spread awareness to help eradicate heart disease and stroke in millions of women.
  • February 7 to 14, Congenital Heart Disease Awareness Week.
  • February 22, Heart Valve Disease Awareness Day.

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According to the American Heart Association, 655,000 Americans die annually from heart and cardiovascular diseases. Forty-three million women have some type of heart disease. Two to three million people have Congenital Heart Disease (CHD) and as many as 11 million have heart valve disease that kills around 25,000 people per year.

Here’s the good news: 87 percent of all heart issues are believed to be preventable. Plus, as medical care and treatment have advanced, people with CHD live longer and healthier. Valve disease can usually be successfully treated in patients of all ages. However, positive outcomes call for people to practice self-care and, if necessary, make lifestyle changes.

Most of us already know that being physically active, eating healthy foods, getting enough sleep, not smoking, and finding healthy ways to reduce stress can help prevent heart disease. But many of these things are easier said than done and some are especially difficult for people with dwarfism and disabilities. Take, for example, the advice to be physically active. While diet and exercise are touted as our greatest weapon and reduce our chances of heart disease by as much as 80 percent, the recommended 150 minutes of heart-pumping physical activity per week may not be feasible.

Yet not being able to walk briskly, do water aerobics, or play tennis doubles doesn’t take us off the hook. Being active is not an all-or-nothing thing. Physical activity is anything that moves our body and burns calories. Any amount of movement is better than none. And for those of us who are sedentary, sitting less is a great place to start along with walking and stretching. 

It’s also important to know the five numbers that determine our risk for developing cardiovascular diseases: (1) total cholesterol;  (2) HDL (good) cholesterol; (3) blood pressure; (4) blood sugar; and (5) body mass index (BMI). I never used to pay attention to these numbers, but now I ask for copies of blood work reports and for the numbers when my blood pressure is taken. Knowing whether a number is in or out of the healthy range is the best way to be pro-active in managing heart health. I’m as much a member of my health care team as any doctor or nurse.

If there’s something I can do to avoid a stroke or heart attack, I’m going to do it. How about you?

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