Month: May 2021

Categories
Accessibility Accommodations

Why Did You Buy a House With a Dead Tree in Front?

Norma & Angela

In our first two years living in Rochester, New York we rented a one-and-a-half bedroom apartment with windows so high that we could only see the sky on one side and the carport roof on the other side. We bypassed properties with a view and rented a cheaper unit so we could save for a deposit on our own home. We hated not seeing out the windows, but it was the only way to accomplish our goal of home ownership.

So after being married five years, we bought a modest two-bedroom home with window views accessible to our 35-inch line of sight.

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However, our delight was not understood by our young niece who couldn’t understand why we bought a house with a dead tree in the front. As a Florida girl, she didn’t know about deciduous trees.

Among other things, we chose the house because of its accessible features and potential:

  • The attached two-car garage eliminated the need to scrape winter snow and ice off the cars.
  • The short driveway reduced the snow shoveling volume.
  • The steep steps from the garage into the kitchen could be modified with a handrail and five low-rise steps.
  • A platform lift could ride us down the stairs to the basement laundry.
  • A ramp could be placed over the steps at the front door.
  • The large kitchen could be gutted and modified to our specifications.

After a year of saving for the kitchen modifications, we retired the platforms built for our Baltimore apartment. The renovations began during a three-week visit from Eric, a contractor friend from New Zealand, when he ripped out the inaccessible cabinets before recovering from jet lag. Eric built the custom cabinet frames; inset a stovetop into one of the cabinets; painted, plastered, wallpapered, and replaced missing floor tiles.

After Eric’s departure, we hired a carpenter who was visually-impaired to design, build, and install the pullout drawers and cabinet doors. Robert recognized the carpenter’s talent when he provided his rehabilitation engineering services to equip the carpenter with assistive technology to access the design program on his computer.

Snow covered the yard when we made an offer on the house, so when the snow melted it uncovered too much garden for us to manage. But instead of returning the garden to lawn, we accepted a sharecropping offer from my co-worker, David, and enjoyed an abundance of fresh vegetables.

Instead of hiring a contractor to mow the lawns, we bought a riding mower with a grass catcher that we could slide on and off and added a foot pedal extension. Robert’s job was to maintain the mower and mine was to ride it. The novelty of mowing lawns for the first time in my life quickly wore off when the hose kept disconnecting from the catcher spraying grass everywhere, and the vibration distressed every joint in my body. And we won’t even talk about all the leaves that “dead tree” dropped in the Fall.

So tell me about modifications you’ve made in your home.

This post is excerpted from chapter 9, Home At Last, in “Pass Me Your Shoes.” For a full account, go to https://angelamuirvanetten.com for several retail links to the book and the opportunity to subscribe to my weekly blog.

Categories
FAQs

Are You Disabled?

Frequently Asked Questions
Image by Gerd Altmann from Pixabay

As much as people love to wear designer labels, many are uncomfortable wearing the disability label. This is often true of people who acquire disabling conditions as they age. I saw this when I worked as an advocacy specialist for a center for independent living and the intake paperwork required me to document the individual’s disability. A 92-year-old woman who ambulated with a walker surprised me when I asked what to record for her disability. She said, “I don’t have one.” Clearly she met the ADA definition of disability as one having a substantial limitation on the major life activity of walking. But once she understood only people with disabilities qualified for my help, she conceded that the disability label suited her.

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Actually many people with disabilities reject the disability label. Despite having substantial limitations in major life activities—breathing, hearing, learning, reaching, sleeping, or talking, to name a few—they reject the limitations associated with disability and in so doing reject the label. They have adapted and are able to do whatever they set their sights on. It’s the attitudes of others towards them they see as disabling.

In the post ADA era, it’s generally unlawful to ask someone if they have a disability and people with disabilities are not obligated to disclose their disability. The exceptions being if a reasonable accommodation is requested or disability is a qualification for the service offered.

In the employment context, the dilemma comes when completing job applications which include a check box for disability. Should the applicant leave the box blank or check yes? It’s a personal choice with pros and cons for each decision.

The downside to leaving the box blank is that you miss the employers who are open-minded or looking to increase diversity and favor people with a disability. It also means, that to be consistent, you scrub your Curriculum Vitae clean of volunteer activities that suggest you have a disability. So it’s important to do your homework on the employer before making a decision. You need to know if diversity is encouraged; this is often the case in higher education and larger companies.

The upside to not answering the question is that you remove the opportunity for the employer to trash your application based on preconceived notions that people with disabilities make staff and customers uncomfortable, have more accidents on the job, and need costly accommodations. Of course, an employer who weeds out applications based on a disability identification is discriminating, but finding evidence to prove it is near impossible.

In the case of dwarfism, nondisclosure is moot once you get to the interview. Even though employers cannot lawfully ask if you’re disabled, they can ask how you will perform the job duties. This is the time to request a reasonable accommodation if you need one to make your performance possible. It’s also a good time to share the disability volunteer experience you may have scrubbed from your CV.      

So how do you answer the question, “Are you are disabled?”

For more of my writings on employment discrimination, check out the first two books in my dwarfism trilogy, Dwarfs Don’t Live in Doll Houses and Pass Me Your Shoes, at https://angelamuirvanetten.com/books.

Categories
Disability Rights

Advocacy Makes Change Possible

Boarding bus

Seventeen years ago today, God granted me the desire of my heart when the Coalition for Independent Living Options, Inc. (CILO) hired me as an advocacy specialist in Stuart, Florida.Only in hindsight could I see how—all through the years—God had prepared me for this position:

  • As a dwarf, I lived the disability experience, and advocated for my own acceptance as an equal contributing member of society.
  • I had law degrees in New Zealand and Maryland and admission to the bar in New Zealand, Ohio, and New York.

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  • As a lawyer in New Zealand, I advocated for clients in civil and criminal courts.
  • As a project editor for Thomson Reuters, I wrote disability civil rights law books for lawyers.
  • As a volunteer, I served as a board member of Centers for Independent Living in Ohio and New York.
  • As an LPA volunteer, I was a leader in banning dwarf tossing in licensed establishments in New York and Florida, and breaking the six-inch reach barrier in buildings and facilities open to the public throughout America.
  • As a staff writer for the Christian Law Association, I wrote religious liberty articles and training materials for nonlawyers.

Although I retired from CILO three years ago, I now work as an author and voice for people with dwarfism and disability. I write a weekly blog and have written two books. The third book in my dwarfism trilogy—ALWAYS AN ADVOCATE: Champions of Change for People with Dwarfism and Disabilities—is due to release in the Fall of 2021. My purpose is to offer hope to those who are skeptical about changing society’s discriminatory treatment of people with dwarfism and other disabilities.

I believe that advocacy makes change possible when people call out what is wrong, care enough to stand up for what is right, commit to the cause for as long as it takes, and choose the right forum. Just as important is collaborating in coalitions with like-minded people and organizations, communicating with honesty and respect, and having confidence in God’s power to change hearts.

Always An Advocate repeatedly demonstrates the power of advocacy:

  • Titans of industry were required to lower ATMs, gas pumps, and elevator buttons to be within reach of people previously ignored.
  • Public transportation must be accessible.
  • Cheering crowds applauding dwarf tossing contests were silenced.
  • Volunteer leaders successfully fought for organizational change and civility.
  • Homeowners received reasonable accommodations to override discriminatory rules associations made about pavers, parking, service animals, and the like. 
  • Voters used accessible equipment in accessible facilities served by staff trained in disability sensitivity.
  • Emergency service plans included people with disabilities.
  • People whose disability made them unable to work were successfully represented and approved for social security benefits.
  • School children received an Individual Education Plan providing them with a free and appropriate public education.

Put this book on your “want to read” list and be inspired to advocate for the changes you—and others—need. It can be done.

For updated book release information, go to https://angelamuirvanetten.com. Please subscribe to my blog and receive automatic delivery of weekly posts to your email inbox.

Categories
Celebrations

Not Your Typical Mother’s Day Story

Mother's Day

Mother’s Day is a bittersweet day for Robert and me. The sweet memory is our 1981 engagement announcement on Mother’s Day and the bitter is that only one year earlier my mother lived her last full day on earth. Barbara Mary Muir died at age 45 of melanoma cancer, the deadliest form of skin cancer. And Robert’s mother only lived to see six of our almost 40 years of married life. Irene Maria Van Etten died at age 73 of lung cancer, the leading cause of cancer death in both men and women.

Every Mother’s Day we remember them both with love and gratitude for all they did for us. At the same time, we regret that they didn’t live longer to enjoy the adventures of their adult children and grandchildren. And maybe they would have lived longer if they knew then what we know now.

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May is Melanoma Awareness Month which stresses the importance of skin protection and early detection. In honor of my mother, please allow me to share tips from the American Academy of Dermatology to protect your skin from the sun’s damaging ultraviolet rays and reduce your risk of skin cancer:

  • Seek shade when appropriate, especially when the sun’s rays are strongest between 10 a.m. and 2 p.m.
  • Wear sun-protective clothing, such as a long-sleeved shirt with an ultraviolet protection factor (UPF) label, pants, a wide-brimmed hat and sunglasses with UV protection.
  • Apply a broad-spectrum, water-resistant sunscreen with an SPF of 30 or higher, even on cloudy days.
  • Reapply sunscreen every two hours, or after swimming or sweating.
  • Avoid tanning beds. 
  • Perform regular skin self-exams to detect skin cancer early, when it’s most treatable. See a board-certified dermatologist if you notice new or suspicious spots on your skin, or anything changing, itching or bleeding.

November is officially Lung Cancer Awareness Month, but Robert and I remember it on Mother’s Day. Robert’s mother smoked cigarettes which, in the United States, is the number one risk factor for lung cancer and is linked to about 90% of lung cancer deaths. According to the Centers for Disease Control and Prevention people who smoke cigarettes are 15 to 30 times more likely to die from lung cancer than people who do not smoke.

In honor of Robert’s mother, please listen to medical advice and stop smoking or, better yet, never start. But if smoking has already put you at risk, don’t despair—it’s never too late to stop.  Quitting smoking at any age lowers the risk. And know that when lung cancer is caught early, successful treatment is possible. Those at high risk for developing lung cancer are urged to take preventive measures with annual screening using low-dose CT scans.

It’s understood that God determines our length of days on this earth, but let’s do our part not to cut them short by poor choices.

What are you doing to honor your mother?

For more of my writings, check out my website at angelamuirvanetten.com.

Categories
God's protection

America’s Heritage of Prayer Continues

Women in prayer
Image by Candelario Gomez Lopez from Pixabay

The National Day of Prayer invites people of all faiths to pray for America on the first Thursday of each May. Although President Harry S. Truman signed a joint resolution of the United States Congress reserving this annual date in 1952, public prayer and national days of prayer were not new. In 1775, the Continental Congress asked the colonies to pray for wisdom in forming a nation and to establish America’s peace and freedom upon a solid and lasting foundation. And in four consecutive centuries, Presidents have declared national days of prayer for various reasons: 

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  • Expressing gratitude to “Almighty God in peaceably allowing a form of government for the safety and happiness of the people.” George Washington (October 3, 1789)
  • Encouraging humility before God and seeking His Divine mercy during a cholera epidemic. Zachary Taylor (July 3, 1849)
  • Acknowledging “our dependence on Almighty God and to implore His aid and protection” during World War I.Woodrow Wilson (May 11, 1918)
  • Honoring the memory of the September 11, 2001 victims and comforting those who lost loved ones. George W. Bush (September 14, 2001)
  • Rededicating ourselves to extending religious freedom to all people. Barak Obama (May 5, 2016)

Thankfully prayers are not limited to national days. People pray every day of the year and people with dwarfism are no exception. Although we pray about the same concerns as all humanity, we have more than our share of medical requests.

In a private Facebook group to which I belong, many seek and appreciate prayers. An inclusive request invites positive thoughts from those who do not pray.

The requests range from looking for a diagnosis or a qualified physician with dwarfism experience, a helpful doctor’s appointment, successful surgeries, good physical therapy results, to pain management. Some pray for a first time surgery and others that a surgery will be the last in a long succession. Prayer for unbearable, chronic pain which reduces quality of life to nothing is common.

Group members commit to pray, share good thoughts, and send get well wishes with a generous dose of emojis. Prayers are offered for surgeries with excellent results, quick recoveries, healing, daytime pain reduction, pain free nights, sleep, peace, courage, and perseverance.

Along with the prayers comes love, hugs, encouragement, advice and comfort from those with similar experiences. It helps to know we are not alone. We accept advice from someone who feels our pain, concedes that the road is tough, encourages us to set little goals at first, reminds us to take one day a time, and confidently asserts “you’ll get there!”

“God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.”  2 Corinthians 1:3-4 (New Living Translation).