Categories
Little People of America

Dwarfism Pride Flag Depicts Diversity and Unity

Pride flag dwarfism

Flags have been in the news recently, but this post is not about political protests. And even though prompted by the American celebration of Flag Day on June 14, today’s focus is on a new flag representing dwarfism and Little People of America (LPA).

LPA unveiled a Dwarfism Pride Flag on International Dwarfism Awareness Day (October 25, 2023). It’s “a conceptual and inclusive abstract representation of the dwarfism community, emphasizing both its diversity and unity, as well as the significant role of allies and supporters.” LPA gave four rationale for the flag’s creation:

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  1. Visibility and Recognition: A flag helps raise awareness and promotes visibility, making it easier for people to identify and recognize our cause. 
  2. Unity and Pride: It can foster a sense of belonging and solidarity, reminding us that we are part of a larger movement working towards positive change.
  3. Advocacy and Representation: Our flag can be a powerful tool for advocacy and representation. 
  4. Symbol of Hope: A flag can inspire hope and provide a sense of empowerment to individuals with disabilities. It represents resilience, strength, and the determination to overcome challenges.

LPA recruited two graphic designers who are LPA members and individuals with dwarfism—Jon Morato and Margo Drew. In a video interview Jon and Margo shared their vision for a simplistic and iconic flag design that (1) represents the dwarfism community; (2) incorporates and connects with LPA’s brand; and (3) is distinct from other pride flags. Both felt the weight and importance of the task to create something that represented diversity and the progress that LPA has made. And as they hoped, the flag design is something the dwarfism community can be very proud of and rally behind.

The Dwarfism Pride Flag is not only visually pleasing, but also symbolizes various aspects of LPA and the dwarfism community. Unlike horizontal stripes on traditional flags, the colors and stripes run vertically to draw attention to the common trait that makes people with dwarfism stand out from society—short stature. Although stature brings little people together, community members have 200 plus different types of dwarfism. This variation is represented with blocks differing in size, color and shades in a unified arrangement to show togetherness as a community.

The blue stripe on the far left side of the flag is the spine, the backbone, that recognizes the integral role allies, friends and family play in supporting LPA at the national and local levels. The 13 color blockings match the number of LPA districts. Green ties in with the color of LPA’s brand and dwarfism awareness activities.

When unveiling the flag, LPA leadership stated:

“Seeing our flag flying reminds us that we are not alone, and a supportive community is fighting for our rights. It is a rallying point for our members and allies, igniting a sense of pride and determination to create a more inclusive society.”

So let’s be proud of our visibility and fly the Dwarfism Pride Flag to represent our unity in diversity, advocate for inclusion, and symbolize hope.

This post was informed by the following sources:

Categories
Disability Rights

Halt Traffic Violence to Vulnerable Pedestrians with ADA Enforcement

Pedestrian crossing

“The equivalent of more than three Boeing 737s full of people fell from the sky every month in 2022.” Smart Growth America.

This analogy highlights the tragedy of 7,508 pedestrian deaths, the highest number in 40 years. Among the deceased were those vulnerable to traffic violence—people with dwarfism, users of wheelchairs and mobility scooters, and those age 50 plus. Consequently, week 2 (June 9-15) of National Safety Month’s focus on Roadway Safety is the ideal time to zoom in on pedestrian safety.

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As a person who fits all three of these vulnerable categories, I’m well aware of danger when crossing the street or walking behind cars in a parking lot. I’m invisible to drivers and can’t walk or ride fast enough to escape vehicles hurtling towards me or backing out of a parking space. The risk of harm is not exaggerated. I know two Past Presidents of Little People of America who were pedestrian accident victims: Mary was killed and Marge was seriously injured.

In 2024 alone, America’s media is replete with reports of fatal collisions between vehicles and pedestrians using a wheelchair or mobility scooter. Georgetown University research in 2015 revealed that crashes are 36 percent more likely to kill a pedestrian using a wheelchair than pedestrians on foot. This is possibly explained by the torso and head of a wheelchair user or Little Person being struck directly compared to a walking pedestrian being slammed in the thighs and pelvis area.

So let’s look at what makes pedestrians of short stature, traversing on wheels, or aging more vulnerable to traffic violence:

  • More time to cross is needed and current traffic light timings are set to the average walking speed of a younger person without physical disabilities.
  • It’s harder to be seen by drivers especially when lighting is poor.
  • Inability to react as quickly as walking pedestrians.
  • Wheelchair users are often forced to ride on streets when sidewalks are either nonexistent or in disrepair; or curb cuts are either absent or blocked by parked vehicles.
  • Stiff joints and muscles make it harder to check traffic.

Smart Growth America has concluded that “This epidemic continues to grow worse because our nation’s streets are dangerous by design, designed primarily to move cars quickly at the expense of keeping everyone safe.”Yet Title II of the Americans with Disabilities Act (ADA)—a comprehensive disabilities civil rights law—is designed to prohibit disability discrimination by states and local governments. As a result, such entities must design roads, sidewalks, curbs, crosswalks, and other infrastructure, to be accessible to people with disabilities.

In addition to vulnerable pedestrians following road rules and taking precautions to be seen by drivers, let’s advocate for accessible communities as follows:

  • Contact your Public Works Department about sidewalks, signals, and signs needing improvement.
  • Write a letter to the editor of your newspaper.
  • Contact your Mayor, City Council, or County Commission and ask for a Walkable Community Program and ADA enforcement.
  • Join a citizen’s pedestrian committee.
  • Whatever else comes to mind.

Image credit: Pexels from Pixabay

This post was informed by the following resources:

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Categories
Open

Finish Reading More Books

AAA audio cover

If you’re anything like me you have multiple books waiting to be read. They’re either stacked on a table, lined up on a bookshelf, or downloaded onto your e-book reader. You truly plan on reading them, but never quite get around to it. Now I have an idea for how to get these books off the “want to read” pile. Here it is in three simple words: Audiobook Appreciation Month.

According to the Audio Publisher’s Association 2018 survey, (1) 57% of audiobook listeners agreed that “audiobooks help you finish more books;” and (2) the top three activities while listening to audiobooks are: driving (65%), relaxing before going to sleep (52%), and doing housework/chores (45%). Other common multi-tasking activities include commuting, exercising, gardening, and walking.

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Road trips are a great opportunity to listen to audiobooks. In 1996, I fondly remember a family drive when we took turns reading out loud from Dr. John Gray’s print book, “Men are From Mars, Women are from Venus.” We never actually finished the book as the two couples in the car kept interrupting whoever was reading to add their commentary. Two years later, I could have avoided getting car sick while reading and listened to Dr. Gray himself narrate an audiobook edition.

It’s no surprise that audiobooks have their own appreciation month. The audiobook industry is worth more than two billion dollars and is expected to hit 35 billion dollars by 2030! June was chosen as the celebration month as it coincides with the beginning of summer, vacations, and reading programs.

Despite being costly to produce—an average of $300 to $400 per finished hour of production—audiobooks remain affordable. About 40% of all audiobooks are consumed through public libraries that offer free downloads. And audiobook apps like Speechify, Audible, Audiobooks, and Kindle typically offer free membership for 30 days and credits which can be exchanged for a title of your choice.

So are you ready to finish more books by listening to an audiobook this summer? May I humbly suggest that you listen to the audiobook I wrote and narrated: “Always an Advocate: Champions of Change for People with Dwarfism and Disabilities.” It’s available on Amazon, Audible, and iTunes. But first listen to a retail sample of me reading an excerpt from Chapter 14, “Let Me Ride” discussing my experience at a Saul Alinsky training advocating against inaccessible public bus transportation.

https://bit.ly/3KuvRpj

And then read Marsha’s May 2022 audiobook review:

“Angela Muir Van Etten’s audiobook is a real eye opener. You get to know Angela through her words and, even better, to enjoy her distinctive New Zealand accent as she reads her story. Angela details her struggles inside and outside the disabled community and doesn’t whitewash the challenges she and other Little People face as individuals and as a group as they coalesce to bring about societal changes and remove architectural barriers that most of us never even see. . . I know this is the last book in a trilogy but it can’t be the last one she writes! Keep on keeping on Angela!”

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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

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              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/

              Categories
              Accessibility

              Web Access Mandated for State and Local Governments

              Web Design

              Every day, people use the web and mobile apps to access public programs and services related to courts, education, emergency information, healthcare, parking, permits, taxes, transit, voting, et al. And every day, accessibility barriers deprive people with disabilities equal access to these services. Common barriers include the following:

              • Poor color contrast makes text unreadable by people with limited vision or color blindness.
              • Use of color cues alone precludes access to information by people who are color-blind or use screen readers to speak the text appearing on a screen.

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              • Lack of text alternatives (“alt text”) on images—pictures, illustrations, and charts—hides the content from people who are blind.
              • No captions on videos fails to communicate the content to people with hearing impairments.
              • Inaccessible online forms may not be fillable by people with disabilities who need labels that screen readers can convey to their users, clear instructions, and error indicators.
              • Mouse-only navigation withholds information from people with disabilities who control their computers and other devices with verbal commands instead of a mouse, trackball, or keyboard.

              In effect, an inaccessible website can exclude people just as much as steps at an entrance to a physical location. Just as the Americans with Disabilities Act (ADA) provides for barrier removal of steps, it also sets obligations for barrier removal on websites. In accordance with this requirement, the United States Department of Justice (DOJ) has issued a final rule, under ADA Title II, clarifying the obligations of state and local governments to make their websites and mobile applications accessible to people with disabilities.

              Attorney General Merrick B. Garland signed the rule on April 8, 2024 saying:

              “This final rule marks the Justice Department’s latest effort to ensure that no person is denied access to government services, programs, or activities because of a disability. By issuing clear and consistent accessibility standards for state and local governments’ digital content, this rule advances the ADA’s promise of equal participation in society for people with disabilities.”

              Assistant Attorney General Kristen Clarke of the Civil Rights Division added:

              “This rule is truly historic and long overdue as it will help break down barriers that have kept people with disabilities from fully participating in American life. For far too long, people with disabilities have been left behind as we’ve witnessed more services and government activity increasingly move online. This rule is helping to usher us into a new era by bringing an end to the discrimination faced by millions of Americans with vision, hearing, cognitive and manual dexterity disabilities across our country.”

              As is customary with sweeping regulatory changes, the effective date for this rule is delayed. State and local governments with a population of 50,000 or more must comply beginning on April 24, 2026; those with a population of less than 50,000, as well as special district governments, must comply beginning on April 26, 2027.

              To find out more about the ADA, visit ada.gov or call the DOJ toll-free ADA information line at 1-800-514-0301 (voice) or 1-833-610-1264 (TTY).

              Image credit: Mudassar Iqbal from Pixabay

              Reference sources:

              For more of Angela’s writings, please visit her website for links to her books, blog, and media at https://angelamuirvanetten.com.

              Categories
              Accessibility

              Fed Up With FedEx

              FedEx delivery

              Normally I would be excited to see a delivery at my door within two days of the order—especially knowing that this delivery was my mobility scooter. But when I turned into the driveway and saw the scooter box in front of the garage door, I was extremely aggravated. There was no way my weight of 73 pounds could budge the 100 pound box, let alone move it out of the way!

              Common sense should have told the driver that blocking entry to the garage was a really bad idea. In anticipation of this nonsensical package drop, I had tried to use the shipment tracking number to avoid this outcome. It didn’t work. Even so, I was grateful the package did not trap me inside the garage and prevent me from taking Robert to his kidney dialysis appointment.

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              I called the FedEx customer service toll free line to ask for a driver to come and move the package. However, the computerized menu did not have a pick for packages already delivered. After listening to the menu a few times, the closest choice was “something else.” Finally, the computer transferred me to a live person!

              Although the customer service representative (CSR) was polite and apologetic, his approach fell far short of any solution. He used the tracking number to identify the station that delivered the package and sent them a message asking for a driver to come and move it. But he refused to give me a direct contact number or email address I could use to follow up with the station in the event nothing happened. At least I pried out of him the street address of the station that delivered the package.

              When the package sat in front of my garage for another eight hours, I used this address to locate a direct phone number to speak with a CSR at the station where the package came from. The CSR claimed to have no knowledge of the message sent by the toll free CSR earlier in the day. His action was to call the owner of the station closest to where I live and get his commitment to send a driver to move the package first thing in the morning. This CSR also refused to share the name or phone number of the local station, thus depriving me of direct follow up if the package was not moved in the morning.

              So what did I see when I looked first thing the next morning? The scooter package still sitting in front of the garage door! Once again FedEx failed to follow through. So I called a friend who works at FedEx and she located a driver willing to come and move the package. And I’m sure he would have come, but a cousin came by about the same time and offered to not only move the package, but also to assemble the scooter. Naturally, I accepted his offer and cancelled the service offer of my friend’s contact.

              Have you fared any better getting a delivery company to correct their mistakes?

              For more of Angela’s writings, please visit her website for links to her books, blog, and media at https://angelamuirvanetten.com.

              Categories
              Medical

              Kitchen Table or ICU Decisions?

              ICU

              As Benjamin Franklin rightly said: “In this world, nothing is certain except death and taxes.” The difference is we know the date for paying taxes, but not the day our Maker will call us to account for how we have lived. Even so, both days will go better with proper planning. Just as it’s advisable to file an accurate and timely tax return, the process of dying can be ameliorated with an advance directive, known in some parts as a living will—a legal document that explains how you want medical decisions about you to be made if you are unable to make the decisions yourself.

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              Now that April 15th is taken care of (unless you’re like me and filed a request for an extension), April 16th is the national day set aside annually to address healthcare decisions. The goal is to (1) encourage and empower people to begin or continue conversations about their wishes for care through the end of life, and (2) educate people on the importance of advance care planning. Unlike missing a tax deadline, there’s no penalty if you don’t take action on April 16th, but there’s a clear advantage to observing the day so that healthcare professionals respect and meet your wishes.

              Notably, healthcare decisions involve more than end-of-life issues. Anytime a person is incapable of making sound decisions an advance directive is critical for choosing care that matches the choice a person would make for themselves. When a person is unconscious, medical professionals often turn to next of kin to make treatment decisions on issues such as mental health, blood transfusions, and amputations, to name a few.

              According to a 2018 National Survey by the Conversation Project®, 92% of Americans say it’s important to discuss their wishes for end-of-life care, but only 32% have had such a conversation. Dr. Susan Nelson suggests that “our delay in having these conversations is because it often seems too early, then, suddenly, we find it is too late.” The Conversation Project® promotes the kitchen table as the place to begin such conversations, not the ICU.

              I recently found myself in this position when my husband Robert was struggling to breathe in a hospital Intensive Care Unit (ICU). I was asked to give consent for him to be connected to a ventilator to avoid his lungs from collapsing and then to begin dialysis treatment to clear the fluid from his lungs that his chronic kidney disease was preventing. I hated to make either decision because of the risk and skill needed to successfully intubate someone with his type of dwarfism—Spondyloepiphyseal Dysplasia—and the life sentence to dialysis treatment.

              Yet despite my reluctance to make these decisions for Robert, I knew what choices he would make. Thankfully, we had not only had the conversation about our end-of-life care but also had taken the next critical step of formally documenting our decisions with an estate attorney. Robert appointed me as his Health Care Surrogate and signed a Living Will.

              So how far along are you with advance care planning?

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