Month: May 2024

Categories
Work

Combining Fellowship with Family and Book Promo

Fellowship rve

My husband, Robert, went to Australia and New Zealand on a World Rehabilitation Fellowship for six weeks in April and May of 1989. Hard to believe that was 35 years ago! His destination made it difficult for me to stay at home in Rochester, New York while he traveled my homeland and received hospitality from my family and friends. But as much as I wanted to travel with him, being limited to two weeks of annual work leave made that impossible.

After visiting more than 50 assistive technology sites, Robert could boast that he had seen more of the two countries than me. His fellowship was a study of how high-technology equipment is selected and used by people with disabilities.

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The ingenuity of the rehabilitation professionals impressed him, but he was disappointed not to find a rehabilitation engineering job or business opportunity in either country. This made any talk about us relocating Down Under as wishful thinking.  

Since it was three years since I had been home, and not wanting to miss out completely, I flew over for one week in New Zealand before joining Robert for his last week in Australia. In addition to family time, my sister Deborah had organized a television interview on The Bert Newton Show in Melbourne, Victoria to promote Dwarfs Don’t Live in Doll Houses, the first book in my dwarfism memoir trilogy. The book promotion continued in Baltimore, Maryland, at the annual Little People of America conference in July 1989. Two news articles were a definite boost to sales.

Abby Karp. “Little People’s Biggest Problem: Small Minds.”The Baltimore Sun. July 3, 1989.

Shirley Marlow. “In No Small Feat, She Finds True Stature as a Writer.” Los Angeles Times. July 4, 1989.

The trip Down Under caused me to cut my time at the conference back to the four-day holiday weekend. I returned to work and Robert continued his conference commitments. When he checked out of the hotel at the end of the week, he was surprised to see an expensive champagne brunch for four charged to our room. He knew he hadn’t so indulged and was almost sure I hadn’t, either. He questioned the bill, but paid it because I was not there to ask.

When Robert returned from the conference, he confirmed that I had not made this room charge and asked the hotel to remove it from his credit card. It took months for the hotel to concede that the signature on the charge to our room was fraudulent. Apparently, they had been busy investigating many such cases.

This post is excerpted from Chapter 10, Season of Travel in “PASS ME YOUR SHOES: A Couple with Dwarfism Navigates Life’s Detours with Love and Faith.”

Find information on Angela’s dwarfism memoir trilogy, blog, and media on her website at https://angelamuirvanetten.com.

Categories
Awareness

DISABILITY AWARENESS: A Years’ Worth in One Month

awareness

“Knowledge and understanding that something is happening or exists” is Merriam Webster’s definition of awareness. So why do we need awareness months for various disabilities? Surely people know and understand that these disabilities exist. But the prevalence of months focused on specific disabilities suggests otherwise.

Take May, for example, which has multiple disabilities promoting awareness in the United States. It’s tough to keep track of them all. Hence my decision to list 12 disabilities with awareness months that promote understanding, acceptance, prevention, diagnosis, treatment, resources for living with the condition, advocacy, and/or a cure. Together we can make life better for affected individuals and family members.

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1. Asthma and Allergy

      More than 100 million Americans have (1) asthma, a chronic condition that affects the airways in the lungs; or (2) allergies which cause the body’s immune system to see a substance as harmful and overreact to it. https://bit.ly/3QQhdfD

      2. Arthritis

        Nearly 60 million Americans have arthritis which involves the swelling and tenderness of one or more joints causing joint pain and stiffness. https://bit.ly/4bpKOov

        3. Mental Health

          Nearly 50 million American adults have a mental illness. Disorders range from anxiety, depression, eating, personality, post-traumatic stress, and psychosis. https://www.mhanational.org/mental-health-month

          4. Speech-Language-Hearing

          Communication disorders affect about five to ten percent of Americans (15 to 30 million). By first grade, about five percent of children have a noticeable speech disorder. About three million adults stutter and about one million adults have aphasia which impacts speech, writing, and understanding language. https://bit.ly/3V8fCEg

          5. Fibromyalgia

          Fibromyalgia affects about ten million Americans and involves chronic pain; fatigue; sleep disturbances; sensitivity to touch, light, and sound; and cognitive difficulties. https://www.fmaware.org/fibromyalgia-awareness-day-history/

          6. Celiac Disease

          About three million Americans have Celiac—a chronic autoimmune disease—which affects the small intestine making it difficult to digest food. https://celiac.org/mcam/

          7. Lupus

          1.5 million Americans have Lupus, a chronic disease that can cause inflammation and pain in any part of the body due to the immune system attacking healthy tissue instead of fighting infections. https://www.lupus.org/lupus-awareness-month

          8. Strokes

          Every year more than 795,000 people have a stroke which damages brain tissue due to loss of blood flow to part of the brain. https://bit.ly/3QOtcdy

          9. Bladder Cancer

          An estimated 725,000 people live with bladder cancer and more than 80,000 new cases are diagnosed each year. https://bcan.org/news/news/

          10. Ehlers-Danlos Syndrome (EDS)

            EDS affects fewer than 200,000 people and is a group of 13 heritable connective tissue disorders. Joint hypermobility, skin hyperextensibility, and tissue fragility are common to all types. https://www.ehlers-danlos.com/what-is-eds/

            11. Melanoma Skin Cancer

            About 100,640 new melanomas will be diagnosed in 2024 and about 8,290 people are expected to die of melanoma. https://www.aad.org/public/diseases/skin-cancer/prevent/how

            12. Cystic Fibrosis

              Close to 40,000 Americans have cystic fibrosis, a rare genetic disease that affects the lungs, pancreas, and other organs. https://www.cff.org/intro-cf#overview-of-cf

              Image credit: Word images by John Hain from Pixabay

              You may also want to read:

              Categories
              Relationships

              Mother’s Day Song of Praise

              Barbara Muir mum

              I remember with a grateful heart Barbara Mary Muir, my loving mother, whose influence in my life will never be forgotten and can never be replaced.

              Praise the Lord who chose Barbara Mary as my mother.

              Although my life started with grim predictions of an early demise followed by two years of institutional care, I’m thankful mom didn’t reciprocate my rejection of her when she visited. When it was time for my discharge, I rejoice that she brought me home and did not relinquish me to foster care.

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              If my mother had not expected the same from me as my average-size siblings—obedience, chores, and good grades—I would have grown up dependent, weak, and frustrated. In treating me according to age not size, she disciplined me when necessary and stood up to strangers who censured her for doing so in public. She offset the actions of relatives who favored me, especially elderly aunts who gave me more money than my brother and sister. On our drive home, mom insisted that I share it with them.

              I’m thrilled my mother instilled a love of books and reading and always attended parent-teacher conferences to ensure satisfactory progress. She stressed the importance of education and supported me all the way to graduation from law school. My spiritual education was attended in Sunday School, church, and Bible reading.

              Appreciation is due for mom’s instruction on how to live in a world which taunts those with differences. How empowering it is to understand words ignored cannot harm and smiles are stronger than scowls.

              I’m glad my mother managed medical needs without (1) parading me before endless doctors; (2) overexposing me to radiation with countless x-rays for research purposes; or (3) trying useless remedies like calcium tablets, stretching, or hormones.

              I’m delighted mom taught me how to be independent. She allowed me to go to kids camps and, at 15, to take a train for 300 miles to visit a girlfriend for a week.

              In her quest for me to have fun like the other kids, she tried to get me a fast ride on a handheld surf board. Instead, I was dumped onto the sand when three waves piled on top of each other. My board went flying, my bathing cap was swished off, and I rode in on the bottom of the ocean floor with my feet facing their soles to the sun. Mom expected a torrent of fury when I surfaced. All we could do was laugh.

              My joy is in knowing my mother’s generosity; hospitality; service to people in need; love of flower gardens, travel, theater, music, and vacations has spilled over into how I live my life. My regret is that mom took her last breath the day after Mother’s Day at age 45. Although I was not ready to say goodbye at age 26, I do not grieve like those who have no hope. I share my mother’s faith that we will meet again on the Day of the LORD. (1 Corinthians 15:51-57; 1 Thessalonians 4:13-17.)

              Image credit: unknown photographer of a well-known subject, my mum.

              This post was first published on May 9, 2022 and is drawn from Chapters 1 and 2—’Understood’ and ‘Educated’—in Dwarfs Don’t Live in Doll Houses by Angela Muir Van Etten.

              You may also want to read “Not Your Typical Mother’s Day Story.” May 10, 2021. Angela’s blog post. https://angelamuirvanetten.com/not-your-typical-mothers-day-story/ For information on Angela’s books, blog, and media go to her website at https://angelamuirvanetten.com/books/

              Categories
              Awareness

              FOUR MILLION NEW BOOKS A YEAR: Write Reviews to Help People Pick What to Read

              advice

              Reviews help customers make good purchasing decisions. As the author of a dwarfism memoir trilogy, I am especially interested in book reviews and the designation of May 3 as “Write a Review Day.” Even though the day was founded to help the travel industry recover after the COVID-19 pandemic, it doubles as a guidepost for readers choosing among the four million or so new books published annually in the United States.

              This is an opportune time for me to thank readers who wrote a review of my book, “ALWAYS AN ADVOCATE: Champions of Change for People with Dwarfism and Disabilities.” Maybe this sampling of book review excerpts will help you decide to read the book:

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              Angela writes as if she were a close friend sharing her story over a cup of tea—infusing humor and anecdotes. . . Always an Advocate doesn’t sugar coat the work needed in accomplishing great change, or the turmoil of politics that can exist . . ., but it does show us that it is possible. . . Angela’s work speaks to me like few books have.
              ~ Juliana (September 24, 2021)

               “Angela does a magnificent job bringing you into this story. . . It’s unique, unheard, and untold. . . Must read!”
              ~ Clinton (September 24, 2021)

              “I was pleased to get a copy of Always an Advocate by activist and lawyer Angela Van Etten. . . Drawing on her own personal experiences, alongside Robert, Angela demonstrates that the fight for equality for disabled people is not easy. I would definitely recommend this book to anyone interested in disability advocacy.”
              ~ Erin (September 15, 2021)

               “Angela’s many examples of her pursuit to realize remedies by agencies, boards, and governments demonstrate that achieving success in getting decisions-makers to correct problems or remove barriers is rarely easy, never automatic, and seldom a solo effort, however she shows all of us that it is do-able [and] shows us the way.”
              ~ Lee (July 29, 2021)

              “In a year where we have seen a multitude of books tied to disability, and the disability rights movement, come out, Angela stands alone as THE guide book for how to actually make the changes that we need to see in society. . . I strongly recommend this book for any growing advocate from the ADA generation and after. It reminds us that the battles that we fought aren’t easy, and that the work is far from done, while also arming you with the level of analysis and thinking we need as a movement to succeed. . . Pick it up today.
              ~ Rebecca (October 24, 2021)

              “Angela has once again knocked it out of the ballpark with her new book.”
              ~ Michael (September 27, 2021)

              “This is an amazing book about passion, patience and perseverance. . . She shares her faith and humor throughout the book as she talks about her journey as an advocate. . . She fought for banning dwarf tossing, improving reach barriers in public facilities and advocating for those with ADHD, just to mention a few.”
              ~ Lois (September 9, 2021)

              Image Credit: Qualityrendersmicrostock from Pixabay

              Bonus Book Reviews

              “This book gives a peek into Angela’s life, the life of a Little Person, and documents her willingness to jump into the battle to help those who are struggling due to any disability. . . Reading this book gives me hope that one day there will be ‘Equal Access’ for all.”
              ~ Debby (September 16, 2021)

              “The encounters of ATMs, parking spaces, and access to public buildings are a few of the giants Angela has had to overcome. . . Angela gives God the credit for making the impossible happen. . . Read this book and know that you too can make a difference in advocating for what is right.”
              ~ Brenda (September 30, 2021)

              “We should all be thankful for her grit and tenacity. A book everyone should read!!”
              ~ Becky (September 27, 2021)

              “Always An Advocate’ an important book, well written, easy to read, funny at times and above all conveying Angela’s passion for fighting for and defending the rights of disabled people. I certainly recommend it.”
              ~ Geoff (September 16, 2021)

              “This book will encourage you to step off the sidelines to become an advocate.”
              ~ Ava (September 16, 2021)

               “I read the whole book in one sitting. The range of her concerns and actions include not only issues of concern to little people, but those of people of many other disabilities and ages.”
              ~ Dianne (September  16, 2021)

              For information on Angela’s books, blog, and media go to her website at https://angelamuirvanetten.com/books/