Month: September 2021

Categories
Celebrations

DWARFISM TRILOGY COMPLETE: Recurring Pattern of Three Emerges

Trilogy Complete

After 33 years, my dwarfism trilogy is complete. Three books in a little more than three decades about God’s three gifts of grace in my life—faith, hope, and love. As it happens, the word “three” has emerged as a thread in this cradle to retirement memoir series.

ALWAYS AN ADVOCATE: Champions of Change for People with Dwarfism and Disabilities (#3), officially publishes on October 1st. Organized into three parts, Part I is on volunteer leadership challenges; Part II is about dwarf tossing; and Part III deals with equal access.

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Part I discusses the three times Robert or I served as LPA President during the years membership grew from about 3,000 in 1980 to 6,000 in 2006. Part II addresses LPA’s action to halt the dwarf tossing atrocity in three states—Illinois, Florida, and New York. Part III involves equal access to the built environment, education, emergency operations, housing, social security disability benefits, transportation, and voting. It took three years to break the six-inch reach barrier in the built environment standing against three of the most powerful industries in the nation—banking, oil, and retail.

The book will be released in three formats: e-book, paperback, and audio.

PASS ME YOUR SHOES: A Couple with Dwarfism Navigates Life’s Detours with Love and Faith (#2) published in October 2020. An e-book release is planned for our 40th wedding anniversary in November 2021. Robert and I had three marriage ceremonies in 1981. The wedding and anniversary rings on three fingers of my left hand symbolize our commitment.

Though if one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken.
~ Ecclesiastes 4:12, New International Version

Robert and I met when I came from New Zealand to America for three months on a Winston Churchill Fellowship. I obtained an American law degree after attending law school for three semesters. Despite passing the three day Ohio bar exam, I experienced discrimination in three job interviews.

After a three-hour hip replacement surgery in 1997, Robert tanked up on three pints of blood. When he forgot to bring his electric razor to the hospital, a hand razor was off limits for three weeks because he was on a blood thinner. We couldn’t decide if the resulting beard gave him the distinguished professor or garden gnome look.

Dwarfs Don’t Live in Doll Houses (#1) published in 1988 and will be released as an e-book in December 2021. It took three photo shoots on bitterly cold days to get the right cover photo image.

I’m the eldest of three children and Robert has three younger brothers. Our adult height is the size of a three year old. When I was a bridesmaid for the third time, someone said, “If you’re a bridesmaid three times, you’ll never be married yourself.” Don’t believe everything you hear.

So what do all these threes mean? I’ll give you three guesses. Nothing more than interesting trivia.

More information and updates on my dwarfism trilogy is found at https://angelamuirvanetten.com/books/.

Categories
Awareness

Not Your Typical Father’s Day Story

Alz purple

Celebrating Father’s Day in September is out of kilter with the American calendar. But right on time in New Zealand and Australia where fathers are honored in September not June. And given that my father died of Alzheimers in Australia, this post is timed with Down Under tradition and World Alzheimer’s Day.

Every 65 seconds someone in the U.S. develops Alzheimer’s Disease, the most common type of dementia. And four out of five New Zealanders knows, or has known, someone with dementia. In my family, it was my father’s Alzheimers that brought the disease into our homes. 

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In the early stages, we knew something was wrong with dad even though he still lived independently. Dad also knew things weren’t right. In a notebook filled with random thoughts and reminders he wrote, “I am definitely ready to stop work.  I’m no longer sharp enough to carry on in real estate.” He described himself as muddled and mixed up.

As dad’s condition regressed from mild to moderate, he repeatedly misplaced things, became more temperamental, and got lost in the town where he grew up and once knew like the back of his hand. Alzheimers is correctly dubbed “a family disease” given the impact the diagnosis has on family members. When dad needed more support, my brother and sister shared caregiving duties. But they had to contend with his refusal to eat less and exercise more, confusion, restlessness, and agitation as he tried to remember what he had forgotten. If he remembered what he was looking for, he usually didn’t find it. He even needed reminders to shower and change clothes.

When dad reached the severe stage of Alzheimers, he needed 24/7 care to keep him safe. All three siblings and spouses accompanied him on the day he moved into an aged care residence. Dad was warmly greeted by staff and was all smiles when he was served a delicious three-course meal. We handled it like any other day and left him saying, “We’ll see you later.” He never protested this change of residence.

For the next five years family and friends mourned the gradual loss of dad’s cheerful personality, corny jokes, smile, conversation, alertness, memory, ability to read and enjoy family photos, and physical functions of walking and feeding himself. So when we gathered for his memorial services we were ready to eulogize his 81 years of life. In his home church at Papakura East Presbyterian we celebrated his passing into eternity with Jesus—the one dad greeted every morning with “Good morning Lord” after opening the bedroom curtains.

We remembered the good times along with dad’s many sayings:

  • Civility hurts no one.
  • I’m seldom right, but I’m never wrong.
  • Patience is a virtue seldom possessed by a woman and never by a man.
  • Answering the phone, Santa Claus speaking or Russian Embassy.
  • There are only 364 days until Christmas (his annual quip on December 26th).
  • If someone gives you trouble, kick them in the shins and climb up the bumps (his advice to me as a child).

This post includes highlights from “Pass Me Your Shoes,” the second book in my dwarfism trilogy, chapter 24, Dad’s Alzheimer’s Disease. Buy links are available on my website at https://angelamuirvanetten.com/pass-me-your-shoes/.

Categories
Disability Rights

Fair Housing Disability Anniversary

Mike and Hannah

It took 20 years after passage of the Fair Housing Act to add disability to the list of classes protected from housing discrimination. And September 13 is the day to celebrate the Fair Housing Amendments Act of 1988.

When employed as an Advocacy Specialist for a Center for Independent Living, I often relied on the Fair Housing Act to confront the discriminatory practices of homeowner associations (HOAs) against residents with disabilities. A common grievance was the HOA’s refusal to make reasonable policy exceptions. Many of these residents lived peacefully in their communities for years until new HOA rules were enacted and enforced.

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Here are some examples below:

  • Mike took his service dog, Hannah, off-leash for her daily exercise run. Management objected to his violation of the HOA off-leash rule and posted a No Pet sign where Hannah exercised. Mike is an amputee, has epilepsy, and uses a power wheelchair for mobility. Hannah is not a pet and is individually trained to fetch what Mike drops and to run for help should he fall or have a seizure. Hannah is obedient to 30 voice commands and doesn’t need a leash to stay close to Mike. After I exchanged letters with the HOA attorney, the HOA reluctantly made an exception and allowed Hannah to run off-leash.
  • Shirley had parking violation notices placed on her SUV parked close to her building. Her mobility impairment made it impossible for her to walk to the distant newly designated area for SUVs. Despite having a disabled parking permit for her SUV, the HOA was threatening to tow, boot it, or impose a daily fine. My letter on Shirley’s behalf persuaded management that federal law trumps HOA parking rules.
  • Margaret’s HOA directed her to move the pavers off her lawn to maintain the uniform appearance in front of the parking spaces. Margaret needed the pavers to provide a solid walking surface as a shortcut to her vehicle; she couldn’t walk the long way around on the sidewalk. The HOA manager’s bravado disintegrated when I met him in person and he approved Margaret’s paver accommodation.
  • Joyce parked her battery-powered scooter on the walkway outside her unit when charging it with a cord through her window. Her neighbor complained about the obstruction to the path of travel. I proposed two alternatives: (1) install an electrical outlet under the stairwell so the scooter could be charged without blocking the walkway; or (2) widen the sidewalk in front of Joyce’s unit to allow a three-foot clear path of travel.  

None of the above accommodations cost the HOA any money, unlike Marilyn’s case. Marilyn was able to use the security key to unlock the front door of her apartment building, but she ambulated so slowly with her walker that the lock clicked closed before she reached the door. Besides, even if Marilyn reached the door before it locked, the door was too heavy for her to pull open. The HOA was persuaded to purchase and install an electronic door opener.

For more information, go to “A Guide to Disability Rights Laws: Fair Housing Act.” U.S. Department of Justice, Civil Rights Division, Disability Rights Section. February 2020. https://www.ada.gov/cguide.htm#anchor63409

This post is a condensed excerpt from chapter 17—Advocate for Independent Living, pages 169-171—in “Always an Advocate” releasing in October 2021. See book updates at my website, https://angelamuirvanetten.com/always-an-advocate/.

Categories
God's protection

Read A Book Day

Read a book

Labor Day is good for a lot of things: a day off work, retail sales, and celebrating National Read A Book Day. So why not relax and take the opportunity to walk in someone else’s shoes for awhile. I can recommend a really good book. (And no, I’m not pitching any of the books in my dwarfism trilogy.) No, in light of all the trouble in the today’s world, I recommend Maureen Longnecker’s book, “The Other Side of the Tapestry: Choosing to Trust God When Life Hurts.”

Yes, many books have been written about trusting God when life hurts, but this one stands among the best of them.

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Right from the outset, Maureen discloses that she never thought her life would include so many painful events. So much pain that numerous words related to “trial” are needed to describe them: adversity, affliction, challenge, difficulty, discomfort, hardship, grief, tragedy, tribulation, trouble, and woe. Maureen’s many trials manifested in major depression, neck and shoulder injuries, surgeries, chronic fatigue syndrome, feelings of abandonment, claustrophobia, dengue fever, debilitating allergies, being physically unable to fulfill her dream of serving as a missionary, her parents separation, a difficult pregnancy, and her father’s suicide followed a few years later by her mother’s suicide.

Please resist the temptation to avoid reading “The Other Side of the Tapestry” because it’s too much of a downer. In an extraordinary way, Maureen lifted me up by sharing her gratitude for how God used each experience to teach her more about Himself. For example, she discovered that God’s unconditional love does not depend on her ‘performance.’ She found her refuge in God and trusted that nothing could happen to her without His permission. Maureen put it so well when she wrote, 

When we go through hard times, there is something more important than what we’re facing, and that is who is facing it with us. We need to cling to the who when the what makes us afraid.

This book is not only a testimony of Maureen’s faith, but also of the church as God intended it to be. In every struggle, she was supported by loving and caring church members involved in meeting her physical, emotional, and spiritual needs. They prayed, listened, gave godly counsel, shared her tears, accompanied her to hard places, did not judge, did housework, cooked meals, watched her children, and gave financial gifts. 

And in providing details of the depth of her distress, Maureen takes every opportunity to advise and encourage others going through their own ordeal. Permeated with Scripture references and applications, the book’s underlying purpose is clear: to glorify God and minister to others. This memoir does both very well. 

After reading Maureen’s book, Jennifer Sands—a 9/11 widow and author of “A Tempered Faith: Rediscovering Hope in the Ashes of Loss”—was reminded that a broken heart is not healed by explanations—it’s healed by God’s love and the promises in His Word.