Author: Angela Van Etten

Categories
Celebrations

Unforgettable 60th Birthday in Alaska

Robert on platform between train carriages
Robert on apron deck between carriages on White Pass & Yukon Route Railway in Alaska

As a nod to Alaska’s State flower—the Forget-Me-Not—we remember Robert’s unforgettable 60th belated birthday celebration cruising with friends Rick and Bette from Vancouver, Canada to Whittier, Alaska. This was a definite upgrade for Robert and Bette’s tradition of celebrating their same age birthdays together.

In Glacier Bay, we all bundled up to enjoy the view and sound of glaciers calving while sipping hot chocolate on our cabin balcony.

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Hoffmans on balcony
Birthday buddies on ship balcony

We enjoyed our dinners in the supposedly sold out dining room with assigned seating and a personal waiter. Rick credits Robert and me scootering up at just the right moment for four seats to miraculously materialize.

Disembarking and boarding from a ten story ship was complicated by the rise and fall of the tide. Riding down the gangway on the scooter could be a gentle slope on departure and a steep incline on the return several hours later. Despite the gangway slope being reduced by attaching to higher or lower ship decks, it could still be so steep that the scooter teetered at the top! Nonetheless, several crew ensured we boarded safely.

At our first stop in Ketchikan, the cold August temperature required dressing in layers. The downside came when it was time to go to the bathroom and peel off all those layers. We spent our shore time appreciating the world’s oldest collection of native American totem poles and the Great Alaskan Lumberjack Show. Robert felt much older than 60 seated in the outdoor bleachers when staff gave him a woollen lap blanket akin to those used in nursing homes.

In Juneau—Alaska’s capital city—our local tour guide was a relative of Robert’s brother-in-law. He had great insights on how to survive in Alaska. The tip that sticks with me is “cotton kills, wool warms.” In bringing us to the Mendenhall Glacier he lamented how global warming was shrinking the glacier. Indeed glaciologist, Mike Hekkers, reported that for 20 years the glacier has retreated over 160 feet per year.

In Skagway we tackled an incline that rivaled the ship’s gangway. After boarding the White Pass & Yukon Route Railway, the train climbed grades of up to 3.9 percent to ascend 2,865 feet in only 20 miles. Completed in 1900, the railroad was built in treacherous conditions during the Klondike Gold Rush to link the Yukon and other booming gold-mining districts with tidewater at Skagway.

This narrow gauge railroad is an International Historic Civil Engineering landmark comparable to the Eiffel tower, Statue of Liberty and Panama Canal. Just as significant to us was the carriage equipped with a wheelchair lift and, for our amusement, “handicapped eating” presumably intended as “disabled seating” since there was no food service.

Train carriages
Train carriages winding their way along the ledge of a rock faced cliff above and below

Our cruise ended in Whittier. Robert’s cousin Carol not only met us at the terminal, but also for the first time. Carol and her two dogs graciously welcomed us as a guest in their home in Anchorage and played tour guide for a few days.

How about you? Any unforgettable birthdays or destinations?

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Categories
Independence

Fighting for Independence

Statue of Liberty

This July 4th as we reflect on America’s independence, let’s consider the fight for independence continuing for people with disabilities.

My parents understood right from the start that it was vital to my development as an independent mature person that I be treated according to my age not my size. This meant not being given a pass on chores, discipline, or responsibilities. In their wisdom, they didn’t fuss over or do everything for me.

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As a result, I loved the independence of going when and where I wanted when I started driving at age 18. The only problem was that this car was a machine that had to be fueled, watered, oiled, lubed, aired, and cleaned. I never had to think about such things before. Now it was my responsibility and dad insisted that I look after the car myself. One day our different views on the subject clashed.

Mo, a family friend, noticed that one of the tires needed air and offered to take the car to the garage for me. I was about to let him, when dad butted in and said, “No Angela, you take it to the garage yourself.” I was fuming. What did it have to do with dad anyway? Mo was willing to take it, so why not let him? But there was no chance of that now, dad had said enough for Mo to withdraw his offer. I had no choice but to take the tire in myself.

It didn’t take me long to realize that dad was right. I had to learn how to look after my own car. Along with the privilege of driving, came the responsibility of caring for it. This was the beginning of achieving independence for myself as an adult and laid the groundwork for advancing independence for others.

A subtle challenge to independence comes from those who insist on helping people with disabilities when we don’t need it. We must stand firm against such offers so as not to erode our independent living skills or give in to patronization. In the times we do need help, we will ask for it.

As discussed in my dwarfism memoir trilogy, I have supported independent living principles through my marriage, career and volunteerism. For example:

  • I joined forces with Robert Van Etten, a rehabilitation engineer and my husband, who worked to improve the independence of individuals with disabilities at home, on the job, and in public places through environmental changes and adaptive equipment.
  • I served as a board member of a Center for Independent Living in Cleveland, Ohio and was appointed by Florida’s governor to serve on the Florida Independent Living Council.
  • I was a coordinator and advocacy specialist for the Coalition for Independent Living Options in Stuart, Florida.
  • As a volunteer with LPA, I led the charge for little people—and a half million others whose disability involved a reach limitation—to gain independent use of public facilities such as ATMs, bathrooms, elevators, and gas pumps.

What can you add about the disability fight for independence?

This post is drawn from excerpts and concepts in my dwarfism memoir trilogy, https://angelamuirvanetten.com:

  • ALWAYS AN ADVOCATE: Champions of Change for People with Dwarfism and Disabilities
  • PASS ME YOUR SHOES: A Couple with Dwarfism Navigates Life’s Detours with Love and Faith
  • Dwarfs Don’t Live in Doll Houses
Categories
Etiquette

HANDSHAKES: Purpose, Etiquette, and Alternatives

Handshake

The handshake is an ancient greeting dating back to 900 BC to seal alliances and 500 BC to convey peace and confirm the absence of a weapon. Centuries later, the Quakers handshake communicated a sense of equality between the parties. Today, handshakes are used to welcome, accept, honor, respect, congratulate, and express peace, goodwill, or gratitude.

For people with dwarfism, the handshake also represents what little people are looking for in society—acceptance, equality, and respect. Nobody has expressed this better than Paul Steven Miller, Equal Employment Opportunity Commissioner (1994-2004):

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“Little people are looking for a handshake not a handout.”

At four-feet-five-inches, Miller was initially denied a welcome handshake from prospective employers. After graduating from Harvard law school, 45 law firms denied him equal treatment, ignored his credentials, and failed to offer him a job. One employer shamelessly disclosed fear that his presence in the law firm would cause clients to mistake the office for a circus freak show! (All this prior to Americans with Disabilities Act (ADA) protections.)

Although job discrimination is still widespread, in post ADA America, applicants with dwarfism now enter an interview room standing on solid legal ground. Nonetheless a candidate at an in-person job interview must still convince an employer that they are the right person for the position. A good handshake can help deliver this message.

According to the founders of National Handshake Day—celebrated on June 29—when two people shake hands, especially when eye contact is made, they are more likely to have a personal connection and relate positively to the other person. CareerBuilder.com adds that shaking hands, makes people twice as likely to remember you than if you didn’t shake hands. Even though little people don’t need any help getting people to remember us, our handshake must still stand up to scrutiny and not make a bad impression.

A handshake needs to strike the right balance. A firm handshake reflects a confident personality, but a tight grip is too aggressive. In contrast, a floppy handshake projects insincerity or weakness. Yet a soft hold with no eye contact is preferred in East Asian nations.

As a little person with arthritic hands and finger joints I have regularly regretted responding to a handshake gesture. The pain inflicted lingers long after the greeter lets go my hand. Consequently, as politely as possible, I reluctantly buck etiquette and decline to reciprocate. However, I avoid disrespecting the person extending their hand to me by explaining my predicament and offering an alternative greeting.

The fist and elbow bumps popularized during the COVID-19 pandemic has made it easier for people to accept alternative greetings. Other no-contact greetings include:

  • Hand over heart: placing your right hand over your heart.
  • Wai bow: palms pressed together and a small head bow so that your fingers touch the gap between your eyebrows.
  • Shaka sign: three middle fingers folded down while the pinky and thumb are pointed upward and then shaking your hand back and forth.

So what’s in vogue in your world: handshakes or alternate greetings?

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    Categories
    Medical

    “STAY SAFE:” Avoid Slips, Trips, and Falls

    Safety character
    Image by succo from Pixabay. https://pixabay.com/vectors/character-security-a-notice-sign-696951/

    During National Safety Month, the National Safety Council (NSC) designated one week in June to focus on staying safe from slips, trips, and falls. This caught my attention given my being banded as a fall risk when checking into an outpatient clinic or during a hospital stay. And according to the Centers for Disease Control and Prevention (CDC), my past falls have doubled my chances of falling again.

    Did you know that falls are the second leading cause of unintentional injury-related death? According to Injury Facts®, 42,114 people died in falls at home and at work in 2020 and account for almost one-third of non-fatal injuries in the U.S. Nearly seven million people seek emergency room treatment for a fall and 20 percent are seriously injured.

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    Although falling is prevalent among seniors, this post focuses on the fall risk among little people. Although I don’t have data on how many of us are falling, I suspect the fall risk is greater than in the average population. Several factors and conditions contribute to our risk, including the following:

    1. Physiological
    • Impairment in the lower body due to spinal issues or orthopedic limitations. For example, my knees and ankles are fused so I can’t catch myself when I trip.
    • Foot conditions like pain, neuropathy, and hard-to-find well-fitting footwear.
    • Balance problems.
    • Use of mobility devices.
    • Vision problems like retinal detachments.
    • Lack of sleep due to sleep apnea or pain, for example.

    2. Environmental

    • Clutter.
    • Throw rugs or loose carpet.
    • Uneven walking surfaces, like pavers or cracked concrete.
    • Cords on the floor or jutting into the path of travel.
    • Poor lighting.
    • Stairs that are broken, uneven, or without handrails.

    3. Pharmaceutical Agents

    • Taking five or more medications per day.
    • Tranquilizers to treat anxiety and insomnia.
    • Narcotics taken for acute or severe pain.
    • Antihistamine side effects causing drowsiness and reduced coordination, reaction speed and judgment.
    • Over-the-counter medicines affecting balance and gait.

    The good news is that with appropriate interventions little people can drastically reduce the risk of falling.

    Physiological contributors can be mitigated with assistive devices like a cane or walker; sensible shoes that fit well, give good support, and have nonskid soles; grab bars for the shower or tub; a shower chair and hand-held shower nozzle. Exercise can improve strength, balance, coordination and flexibility. Annual vision checks and eyeglass updates are key to spotting and avoiding perilous situations.

    Environmental hazards can be reduced by clearing the floor of anything someone might trip on—clutter, electrical and phone cords, small furniture, throw rugs, and the like. Immediately repair loose, wooden floorboards or carpeting, and clean spilled liquids, grease or food. Install handrails on both sides of a stairway. Maintain good lighting indoors and out. Limit the need for stools by keeping things used often on lower shelves. Use stools with a handle to hold onto. Never stand on chairs, tables or any surface with wheels.

    Pharmaceutical risks can be eased by a doctor or pharmacist medication review.

    What fall prevention tips can you add?

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    Categories
    Medical

    Time to Toss and Replace BMI for Dwarfism

    Weight
    Weight, Fat, Diet by SerenaWong. Pixabay. https://pixabay.com/illustrations/weight-fat-diet-health-overweight-3949588/

    According to USA Facts, 43% of Americans are obese. And according to my Body Mass Index (BMI) fat measurement, I am obese. Now that’s a label I refuse to accept.

    The first one to tag me as obese and tell my doctor that “optimizing the patient’s BMI is clinically indicated” was the pulmonologist who diagnosed me with Sleep Apnea. He’d never laid eyes on me, but calculated my BMI as 32.08 based on my weight of 73 lbs (33 kgs) and height of 3’4” (101.6 cms). (A BMI of 30 or greater rates as obese.)

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    Some Little People have been declined surgery until they reduce their BMI. When employer wellness tests identify obesity based on an employee’s BMI, insurance can be denied or premiums increased. Anxiety episodes can be triggered and serious body image issues can develop.

    As 33-year-old Sammy said, “There’s a fine line between health information and body shaming, and I have felt like I have been balancing that tightrope my entire life.” When Kobie’s BMI classified her as overweight, she responded by exercising too much and eating less. As a result, she was undernourished, constantly thought about food, and couldn’t concentrate properly when studying.

    BMI is widely used in the medical community because it’s an inexpensive and quick method for analyzing health status and outcomes. Critiques that it doesn’t account for body composition, ethnicity, race, gender, age, or dwarfism are largely ignored. For instance, in 2013 the American Journal of Medical Genetics published a letter from several doctors—including Dr. Julie Hoover-Fong, the Chair of the Little People of America Medical Advisory Board. They advised against applying current BMI guidelines to adults with dwarfism as “inaccurate as a surrogate of body fat or predictor of health outcomes.”

    So how does a person with dwarfism assess a healthy weight? My husband Robert was denied entry into a Weight Watchers program because his doctor had no standard for calculating a goal weight!

    The weight for age charts published in 2007 for children with Achondroplasia dwarfism cuts off at age 16 and Achondroplasia only accounts for 60 percent of the dwarf population. What about adults and little people with one of the other 399 dwarfism types? We have no data to guide us.

    If I followed the weight chart for a 16-year old female with Achondroplasia, I’d be huge and barely able to walk. At the 50th percentile, I’d weigh 99 lbs (45 kgs) and have BMI of 43.5; at the fifth percentile, I’d weigh 92 lbs (42 kgs) and have a BMI of 40.

    So without an accurate measure of a healthy body weight, little people turn to alternative measurement standards, like hydrostatic (underwater weighing), skinfold pinches, waist-to-hip ratio, waist-to-height ratio, and neck circumference. But the accuracy and applicability of these measures to dwarfism is also questionable.

    Ten years have passed since it was reported in the American Journal of Medical Genetics that “Studies to address these issues are underway.” It’s time to move the BMI research needle from talk to research to results!

    Ready to dig deeper? Read:

    • Kerry J. Schulze et al. “Body Mass Index (BMI): The Case for Condition-Specific Cut-Offs for Overweight and Obesity in Skeletal Dysplasias.” Letter to the Editor, American Journal of Medical Genetics, Volume 161, Issue 8, August 2013. Pages 2110-2112. https://onlinelibrary.wiley.com/doi/full/10.1002/ajmg.a.35947.
    Categories
    FAQs

    Do You Get Your Clothes in the Children’s Department?

    Clothes
    Standing on a sidewalk near traffic lights, Angela wears an off-the-rack cropped length purple jacket over a T-shirt with black Capri pants. The jacket sleeves were altered for a custom fit; the matching purple flowering trees in the background were a bonus touch of creation.

    Most little people don’t buy clothes at kid stores. We may stand at eye level with young children, but our dimensions differ drastically. At almost 30 years old, Katherine elaborated, “I am actually built like a woman. Kids’ clothing does not account for cleavage.”

    Even if children’s clothes do fit, dwarf adults don’t want to wear them. We have enough trouble being accepted for our age without making it worse by wearing juvenile clothes. Besides, 31-inches tall Katherine observed, “for the most part, [children’s] fashion made for people my size is smothered in unicorns and puppies and Disney Princesses.” At age 31, Cat’s frustration spills over when she confesses “having to resist the urge for violence when people suggest the kids section like it’s no big deal.”

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    So where do little people get their clothes? Although it’s possible to find clothes shopping in regular stores, it takes much longer. Sofiya described it well. “I usually look through almost every section of a store, try over 20 things on in the fitting room and come out with two pieces.” And, according to Katherine, “every once in a while there’s a diamond hidden amongst all the coal!”

    And it’s not a case of one size fits all. The over 400 dwarfism types come with variations in length of limbs and torso, weight, and curves. Different types need different styles. As a dwarf with a very short trunk, I don’t wear clothes that cut me off in the middle, or use horizontal lines or large designs on the fabric. Little people with Achondroplasia have an average height torso and shorter arms and legs; their issues relate more to long pants and sleeves.

    Because it’s so hard for Little People to find off-the-rack clothes that are affordable, comfortable, and stylish, our community shares shopping tips. Facebook groups are a great resource. For example, in the private group—LP Women Fashion, Shoes & Accessories—there were 40 comments answering a query about affordable places to shop for clothes that fit. Group members not only give store and brand names, but also share pics of themselves wearing particular items. The pictures help assess the usefulness of a tip, because we can see how close the buyer is to our body type and whether the tip will work for us.

    Despite being able to buy many clothes off the rack, alterations are often needed to shorten sleeves, pant legs, and the crotch. Ideally people learn to do their own alterations or sew from scratch, but for those like me who lack this talent paying a seamstress is money well spent. Thankfully, I have been blessed with many excellent dressmakers through the years.

    The ultimate wardrobe experience is being able to shop for clothes originally designed for little people. Although the price tag is higher, the expectation is that the product will be superior to clothes originally made for people two feet taller. Although I haven’t used any of the businesses listed below and cannot make recommendations, I’m delighted to share the following list of dwarfism clothing brands:

    • It Actually Fits, https://itactuallyfits.com, a clothing brand catering to little women where they can go online and find something that fits perfectly without having to worry about alterations.
    • Kathy D. Woods, https://www.kathydwoodsstore.com/, an online women’s clothing company showcasing fashions expressly designed for Little People with an impeccable fit for a variety of body types.

    For additional reading:

    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/.