Month: May 2023

Categories
Medical

Hearing Aids: Lost and Found

Robert & Camel
Robert’s hearing aid enhanced sound of camel slurping in his ear

On a flight from Baltimore, Maryland to Stuart, Florida, Robert took a tomato juice shower. We were seated in the bulkhead row when Robert’s sister, Paula, stepped past him, handed him her juice, and asked him to hold it. Robert didn’t hear her and was drenched when she let go the cup.

Upon arrival at Palm Beach International (PBI) airport we were relieved when the scooters were delivered in working order, but shocked when Robert was also presented with his hearing aid. It was the first time Paula and I heard it was missing. Someone in Baltimore noticed it on the scooter seat and made sure it was returned along with the scooter at PBI.

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Not all of our hearing aid stories have such a happy ending. Take the 1990s hearing aids that were crushed when I drove over them in the garage or washed and dried in the pocket of Robert’s pants. For some reason, they didn’t work after that. Thirty years later, I still check the pockets before placing his clothes in the washer.

Advances in technology have transformed hearing aids from clunky devices costing hundreds of dollars to mini computers with sophisticated circuits and microchips costing thousands of dollars. They even have Bluetooth connectivity to cell phones, music players, and TVs. Crushing or washing today’s hearing aids—excluded from health insurance plans—would make this a very sad and expensive story.

Yet misplaced hearing aids remain a common phenomenon in our household. After taking them off, Robert puts them down in various places. A couple of times, I’ve retrieved them from a recycle bin next to the dresser where they were placed. For the most part, they are spotted within a few hours. But not always. Recently, when one hearing aid was missing for a couple of months, Robert’s brother Mickey reminded him the aid was covered by a 3-year warranty. Thankfully, Robert made a successful claim to replace it two weeks before the warranty expired.

The obvious solution would be for Robert to routinely put them on when he gets up and take them off when he goes to bed, takes a shower, or goes swimming. Not only would this habit give a predictable place for storing the hearing aids, it would also eliminate the stress of looking for them. Apparently it would also reduce the risk of developing dementia, falling, declining mobility, depression, social isolation, and anxiety. And the bonus would be improved communication with his wife! And if this routine breaks down, he could pay the extra for GPS locators on the aids.

Robert counts among the estimated 48 million Americans with hearing loss, including the more than 30% of people between the ages of 65 and 74. His loss is attributed to a complication from his Spondyloepiphyseal Dysplasia Congenita (SEDC) dwarfism diagnosis. Although he’s been wearing hearing aids since he was in college, the severity of his hearing loss has increased since he retired.

So how do you relate to Better Hearing and Speech Month?

Read more of our marriage adventures in the second book in my dwarfism 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
Dignity

Dwarfs Object to Being the Plaything of Society as Bullfighters or Frisbees

Trimmers

When I read about dwarf bullfighting in Spain, I had the same visceral reaction as when I heard about dwarf tossing in Australia. I never imagined either “sport” as acceptable entertainment or that dwarfs would be willing participants. I’m pleased that comic dwarf bullfighting didn’t come to my attention until after Spain outlawed “shows or recreational activities in which people with disabilities are used to provoke mockery or ridicule from the public.”

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The parallels between dwarf bullfighting and dwarf tossing are striking. In both cases dwarfs were seen as objects of ridicule. Dwarfs in Spain dressed as firefighters or clowns to chase bulls at public spectacles designed to be humorous. Dwarfs in Australia, America, and the United Kingdom window-dressed with a useless padded helmet and were tossed like a human frisbee to the roar of a jeering crowd.

In March 1985, I was talking about dwarf tossing when I wrote: “Little people are tired of being ridiculed and the butt of people’s jokes, and object to being treated as a plaything of society.” In April 2023, Firstpost Explainers expressed a similar sentiment about dwarf bullfighting. “People with dwarfism were subjected to mockery in public squares in our country, passing down the idea that it is OK to laugh at difference, to so many girls and boys who go with adults to see these shameful performances.”

According to news reports, Spain’s Royal Board on Disabilities pushed for the ban on dwarf bullfighting. Jesús Martín Blanco, a person with dwarfism and director general of the board, denounced the fact that children were the target audience of people with dwarfism presented as buffoons. “If the children are going to laugh at a person in a bullring, they will surely laugh at me when they come out.”

Support for the ban also came from the Alpe Achondroplasia Foundation representing those with the most common type of dwarfism. The parent of a 29-year-old dwarf with Achondroplasia is reported as trying to get these shows banned since her son was born. She tells of people pointing out her son on the street and erroneously describing him as the bullfighter fireman. The legal advisor to the foundation warned against building an unhealthy society by teaching children that it’s a laugh to make fun of those who are different.

As with dwarf tossing, vehement opposition to the bullfighting ban came from the dwarfs involved in the spectacles. Tossees and bullfighters both argued against removing their livelihood. Prior to the legislative vote, dwarf bullfighters staged a protest in front of parliament in Madrid, Spain pleading “Everyone should be able to work at what they want.”

In both cases, the onus was put on the legislature to decide if the participants right to work in freak-show style entertainment outweighed the rights of nonparticipants to be viewed as viable candidates in respectable occupations without being branded by the indelible and degrading images of bullfighting and dwarf tossing. Thankfully, legislatures in Spain, Florida, and New York came down on the side of human decency and outlawed these morally bankrupt practices.

Image by Car Loss Voniya from Pixabay. https://pixabay.com/photos/trimmers-torero-bullfighters-sales-2314774/

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Categories
Relationships

Good Neighbors Give and Receive

helping pic lychees

Good neighbors have always been there for us. In an emergency they’ve used our spare house key to unlock the door for the ambulance and EMTs responding to Robert’s emergency 911 call and on holidays have shared home baking. It makes sense, therefore, that on May 16—National Do Something Good For Your Neighbor Day—we pause to appreciate those who are closest to us.

We were second generation homeowners in our Rochester, New York neighborhood. Many of the original owners willingly shared past stories about the street. Flora, our neighbor across the road, was a huge help.

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Without being asked, she regularly brought our garbage can to and from the curb, trimmed bushes, and swept the driveway. She kept a watchful eye on our place. If we left the garage door open, she let us know. When we were away and allowed a friend to work in our garage, she confronted him and had to be convinced that he had our permission to be there.

Mary, our next door neighbor, was friendly across the fence. Her gardening advice was invaluable. One day when Flora was helping Robert weed an overgrown flower garden, they started hacking at what looked like a dead bush. Mary helped me stop them from destroying the gorgeous lilac bush that blossomed in the spring.

When we were negotiating to buy the lot on which we built our house in Stuart, Florida, I sensed the owner was just as concerned to get a good neighbor for her daughter who lived next door as she was to get a good price. When mailing our financial offer, I included enough personal details to persuade her we were suitable neighbors. Thankfully, our classification as good neighbors wasn’t spoiled when we had to hook up to her daughter’s well for 10 days while our well was surged after sucking too much sand.

Other Stuart neighbors have also been a godsend. They’ve helped lift heavy packages and suitcases, raised the garage door when we were trapped, and plunged the toilet. Anonymous neighbors have carried palm fronds to the organic garbage pickup pile and wheeled the garbage can up the driveway.

As newlyweds in Baltimore living in a multi-level apartment building, we had to learn how to be good neighbors. Despite not talking loudly in the hallways or running the dishwasher late at night, the noise from dragging the stool across the kitchen floor resulted in neighbor complaints. In this case, being a good neighbor meant replacing the stool with a carpeted platform along the length of the counter.

Over the years we have been good neighbors when we—

—watched a child while her mother took her sister to the ER.

—shared plants, coconut palm saplings, coconuts, and fruit with whoever wanted them.

—welcomed new neighbors with flowers.

—stopped guests from parking on our neighbor’s lawn.

—kept an eye on their home while they were away.

—prayed for them when they grieved the loss of a pet or recovered from surgery.

So what are your good neighbor experiences? 

This post is adapted from the second book in my dwarfism 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
Awareness

Barrier Removal Beats Awareness

Robert barrier removal

As one among 60 or so million people with disabilities in the United States, National Barrier Awareness Day is not a day that I need. Everyday I’m fully aware of barriers that impede the integration of people with disabilities in society. Yet the day is definitely needed by the people without disabilities who erect discriminatory barriers that exclude us from accessing education, employment, the built environment, health care, housing, and myriads of other programs and services.

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When President Ronald Reagan first promulgated the day on May 07, 1986 he recognized that barriers inhibit or prevent so many of our fellow Americans from participating fully in the life of our society. He lamented the effect of barriers blocking the contribution of people with disabilities. However, his proclamation merely called for public understanding and awareness.

Reagan stopped short of calling for barrier removal. Instead he erroneously called for the public to appreciate the barriers people with disabilities must surmount. Absolutely not! We are not obliged to surmount barriers.

Today our focus must be on barrier removal. Just as Reagan boldly demanded Mr. Gorbachev to “tear down this wall” at the Brandenburg Gate in 1987, people with disabilities must demand offenders to tear down disability barriers. The time for soft-peddling and awareness programs won’t get the job done.

This year’s barrier awareness day requires a call for removal of barriers that obstruct major life activities like bending, breathing, caring for one’s self, communicating, concentrating, driving, eating, hearing, lifting, learning, parking, performing manual tasks, reaching, reading, seeing, shopping, sleeping, standing, talking, thinking, walking, wheeling, and working.

Given my stature of 40 inches, I’m continually confronted by reach barriers. For example in the last two weeks I’ve been unable to reach amenities in a hotel, medical building, dental office, and school. The hotel had several reach barriers:

  • The check in counter was above my head making communication with the customer service representative difficult and signing the signature pad impossible.
  • The bed was too high to climb onto.
  • The thermostat set at 68 degrees Fahrenheit was too cold, but was too high to change.
  • Service counters at the breakfast buffet and chef station were too high. We could not see or serve our own food.

At the medical center, a new self-check in machine was installed above my husband’s head and at the dentist, the receptionist was hidden behind a wall that was above my head. At the school I was visiting, the door was locked for security purposes and I was unable to reach the doorbell to announce my arrival. I also had to straddle two parking spaces due to there being no van accessible parking.

Although staff and friends provided an alternative means of accessing services in these scenarios, they all deprived me of independent use of the facility. As you can see, the necessity for barrier removal is frequent and the continuing need to tear down disability barriers can be overwhelming and requires perseverance.

            What barriers have you persevered in tearing down?

Read more about breaking down barriers in book three of my dwarfism memoir trilogy, “ALWAYS AN ADVOCATE: Champions of Change for People with Dwarfism and Disabilities,”https://angelamuirvanetten.com/always-an-advocate/.

Categories
Awareness

Debunk Dwarfism Stereotypes

Clown
  1. Our Height Doesn’t Define Us

Negative names focus on our height: midget, pint-size, runt, shorty, shrimp, and stumpy. But our essence is not measured in inches or based on appearance. Dwarf pride comes from our abilities, character, personality, preferences, heart, soul, spirit, and size.

2. We Are Equal

We are robbed of equality when elevated to a pedestal as heroes or downgraded to victims needing pity and special treatment. Our equality demands acceptance for who we are, inclusion, and accommodations for a level playing field.

3. We Are Not Children

Condescending conversation amplified with a pat on the head, soliciting our response from another adult, and ignoring our presence by reaching over our head to jump the line all need to stop. People with dwarfism must challenge child-like treatment with adult confidence, correction, language, topics, tone, and behavior.

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4. We Are Not All Entertainers (Clowns & Characters)

Little people don’t appreciate strangers offering us a circus job, mistaking us for a performer in a visiting Muppet Show, or inviting us to a Saint Patrick’s Day parade as a leprechaun. Entertainment is one among many career paths little people choose. We are also well represented in professions, trades, service industry, and the arts. We don’t exist exclusively to entertain and amuse the public.

5. We Are Not Needy & Helpless

Little people are not obliged to accept help especially when it’s not needed. Overzealous helpers undermine our independence. We should inform helpers it’s okay to ask if help is needed, but they must accept a “no thanks” reply.

6. We Don’t Only Marry Other Little People

Having height in common is insufficient commonality to make for a happy marriage. People with dwarfism enjoy happy marriages with people of short, average, and tall stature.

7. We Don’t All Know Each Other

An Englishman once told me, “I know your friend.” He was referring to a little person in the UK, a place I had yet to visit and where I didn’t know any people of short stature. Such irrational claims need to be challenged.

8. We Don’t All Look Alike

Many strangers don’t distinguish between us, even when we’re different ages, heights, hair color, and proportions. For example, many little people report being mistaken for reality TV stars, Matt or Amy Roloff from Little People, Big World. It’s important to refute the error, maintain our own identity, and stand our ground when people don’t believe us.

9. We Are Not Carbon Copies Of One Another

Dwarfs do not have the same interests or make the same choices. For example:

  • Some lower kitchen counters and others use stools or climb.
  • Some drive with pedal extensions and others use hand controls.
  • Some couples have biological children, some adopt, and others have no children.
  • In conversation with average-size people, some prefer they kneel down or crouch for eye-to-eye communication and others don’t want any concession to height differences.

10. We Are Not Always Happy

Little people have just as many ups and downs as other people. We don’t all have a happy gene.

Image by OpenClipart-Vectors from Pixabay. https://pixabay.com/vectors/clown-crazy-happy-funny-cartoon-1295519/s

This post was based in part on excerpts from the first book in my dwarfism trilogy, “Dwarfs Don’t Live in Doll Houses.” For more of my writings, go to https://angelamuirvanetten.com where you can subscribe to my weekly blog and find information and buy links to my books.