Categories
Accessibility

ACCESSIBLE MEDICAL DIAGNOSTIC EQUIPMENT (MDE)

Agency Guidance Now a Mandate

Exam table

People with disabilities continue to face barriers to getting medical care because of inaccessible Medical Diagnostic Equipment (MDE). Barriers can include exam tables with heights that cannot be adjusted, mammography machines that require a person to stand, or weight scales that do not accommodate wheelchairs. These barriers result in inequities and exclusion from basic health services for individuals with disabilities, contributing to poor health outcomes.

Twice I have written blog posts on inaccessible MDE. Remember my question on April 19, 2021:

“Does anyone hear the call to advocate for making accessible MDE mandatory?”

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How about the question and answer in my March 18, 2022 post:

“So where do we go to file a discrimination complaint? The answer is NOWHERE.”

Three years later, I’m excited to report that two federal agencies—Health and Human Services (HHS) and the United States Department of Justice (DOJ)—have adopted “Standards for Accessible MDE” developed by the Architectural and Transportation Barriers Compliance Board (Access Board). This is monumental news! The Standards are no longer mere guidance, but are enforceable federal law under section 504 of the Rehabilitation Act or Title II of the Americans with Disabilities Act (ADA)!

HHS was the first agency to adopt the Access Board’s “Standards for Accessible MDE on May 9, 2024” when it adopted the 2017 edition which allowed a low transfer height of 17 to 19 inches. However, the Access Board revised the accessible MDE Standard on July 25, 2024 to specify a low transfer height of 17 inches for MDE used in the supine, prone, side-lying, and the seated position. Although HHS has indicated its’ intent to adopt the update, until this happens the 17-inch mandate is not enforceable.

On August 9, 2024, the DOJ issued a final and enforceable rule under ADA Title II to improve access to MDE for people with disabilities. The rule clarifies how public entities that use MDE, like hospitals and health care clinics operated by State or local governments, can meet their obligations under the ADA. As Assistant Attorney General Kristen Clarke, Civil Rights Division, DOJ, announced:

“Thirty-four years after passage of the ADA, people with disabilities should not have to forgo needed medical care due to inaccessible medical diagnostic equipment.”

Highlights of the DOJ rule requires the following of State and local government entities:

  • Beginning on October 8, 2024, all MDE that state and local government entities purchase, lease, or otherwise acquire must be accessible, until the entities have the required amount of accessible MDE.
  • Although not every piece of existing MDE is required to be accessible, entities must ensure that their services, programs, and activities that use MDE are accessible to individuals with disabilities.
  • Entities that use examination tables and weight scales must have at least one accessible examination table and weight scale by August 9, 2026.
  • Entities must have staff qualified to operate accessible MDE.

ALERT: On September 5, 2024, from 2:30–4:00 p.m. (ET), the Access Board will provide an overview of its’ July 26, 2024 final rule on accessibility standards for MDE. See https://www.accessibilityonline.org/ao/schedule/.

You may also want to read:

“Nondiscrimination on the Basis of Disability; Accessibility of Medical Diagnostic Equipment of State and Local Government Entities.” Civil Rights Division, U.S. Department of Justice. August 9, 2024. https://www.federalregister.gov/documents/2024/08/09/2024-16889/nondiscrimination-on-the-basis-of-disability-accessibility-of-medical-diagnostic-equipment-of-state.

“Fact Sheet: New Rule on the Accessibility of Medical Diagnostic Equipment Used by State and Local Governments.” Civil Rights Division, U.S. Department of Justice. August 08, 2024. https://www.ada.gov/notices/2024/08/08/mde-fact-sheet/

“U.S. Access Board Issues Final Rule Setting Low Transfer Height for Certain Medical Diagnostic Equipment.” Access Board. July 26, 2024. https://www.access-board.gov/news/2024/07/26/u-s-access-board-issues-final-rule-setting-low-transfer-height-for-certain-medical-diagnostic-equipment/

“Standards for Accessible Medical Diagnostic Equipment.” Architectural and Transportation Barriers Compliance Board (Access Board). July 25, 2024. https://www.federalregister.gov/documents/2024/07/25/2024-16266/standards-for-accessible-medical-diagnostic-equipment

“Nondiscrimination on the Basis of Disability in Programs or Activities Receiving Federal Financial Assistance.” Health and Human Services Department. May 9, 2024. https://www.federalregister.gov/documents/2024/05/09/2024-09237/nondiscrimination-on-the-basis-of-disability-in-programs-or-activities-receiving-federal-financial

Angela Muir Van Etten. “MEDICAL DIAGNOSTIC EQUIPMENT: Proposed for State and Local Government Entities.” Blog post, January 15, 2024. https://angelamuirvanetten.com/medical-diagnostic-equipment-proposed-for-state-and-local-government-entities/

Angela Muir Van Etten. “Tackling Inaccessible Medical Equipment, Part II.” Blog post, March 18, 2022. https://angelamuirvanetten.com/tackling-inaccessible-medical-equipment-part-ii/

Angela Muir Van Etten. “Tackling Inaccessible Medical Equipment.” Blog post, April 19, 2021. https://angelamuirvanetten.com/tackling-inaccessible-medical-equipment/

Categories
Open

Outtakes from “Pass Me Your Shoes”

Pass Me Your Shoes

The celebration of National Book Lovers Day on August 9th started me thinking about the outtakes cut from a draft manuscript to manage book length. Readers miss out on engaging material. But authors often save the outtakes for later use. This post includes a few outtakes from “Pass Me Your Shoes.”

Bobby hesitated to set our wedding date on October 31st because itwas Halloween. I convinced him it wouldn’t be an issue because New Zealand doesn’t celebrate Halloween. Although there was no hint of Halloween on our wedding day, I didn’t think about our wedding anniversary being in America on Halloween every year thereafter. Now we have to find a way to avoid getting caught up in the annual celebration of superstition and occult themes.

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# # #

One summer we encountered an access problem that was resolved through ingenuity not confrontation. We were sleeping in a friend’s guesthouse when a persistent, high-pitched noise woke us. We finally identified the smoke detector on the ceiling as the culprit. It was time to change the battery! There was no escaping the noise and it would have been an assault on our host’s hospitality to call him at one o’clock in the morning. We had to solve this problem on our own.

It was an involved process. We dragged the dining room table to the bedroom door, tilted it on end and maneuvered it through the doorway without gauging a hole in the wall. We set the table back on its legs and lifted a chair onto the table. Robert climbed onto the table and then onto the chair. I held the chair while Robert disconnected the battery. Sleep was now possible.

# # #

Robert was excited when his niece asked if her cat, Kendall, could live with us. All he had to do was convince me. It’s not that I dislike cats so much as they make me sneeze and I don’t like getting pawed or scratched. I agreed for Kendall to move in on two conditions: (1) Robert take full responsibility for all Kendall’s needs; and (2) the bedroom would be off-limits.

                          Kendall had everything going for him: personality, gorgeous fur, amazing eyes, and a contortionist’s ability to squeeze into unlikely places. There was one big problem—Kendall refused to use the litter box. Robert consulted cat lovers and tried three different box designs and litter types. However, after three weeks of Kendall toileting anywhere but in the litter box, Robert couldn’t take it anymore. He found him a home with a devoted lover of Himalayan Persian cats.

# # #

Chocolates for a Little People of America fundraiser were being delivered to our address. But the truck driver could not navigate our community without churning up lawns and breaking sprinkler heads. So Robert met the driver outside the gate. He was amazed to see a huge semi-truck and trailer and dumbfounded when the driver opened the back door. Our few boxes of chocolate were the only cargo!

And for the whole story, read the second book in my dwarfism memoir 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
Little People of America

Keynote Speaker at Star Spangled Awards Banquet

Banquet Keynote Promo

In January this year I received an unexpected invitation from Little People of America (LPA) President Eileen Norman. I was blown away when she asked if I was available to be the keynote speaker at the LPA annual banquet in Baltimore, Maryland on July 4th. Wow! What an honor.

Ordinarily I would have jumped at the opportunity. However, health issues had kept attending the Baltimore conference off our schedule. Robert was still immersed in physical therapy after his hospital discharge three months earlier and I was recently hit with severe painful arthritis in my right shoulder. Even though I couldn’t get my head around how I would pull this off, I agreed to pray and think on it before giving an answer a week later.

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In a scheduled phone meeting on February 7th, Eileen satisfied my curiosity as to how my name came up as a potential banquet speaker. I was humbled when she said she had grown up looking at my book “Dwarfs Don’t Live in Doll Houses” on her parent’s bookshelf and believed she was standing on the shoulder of giants. Her vision for the keynote was for members to see our common mission as advocates and for each of us to find our part to play. In order to help people find their role she wanted me to share LPA’s advocacy history and challenge this generation to get involved. I was hooked.

After organizing family caregivers to stay with Robert in my absence, I accepted the invitation to be the keynote speaker. Even in February I knew Robert’s health didn’t allow him to travel, but by March his health took a huge step down. He was in the hospital for ten days and acute rehab for 21 days, followed by in-home therapy three days a week, and outpatient kidney dialysis three times a week. So I waited until we settled into our new routine before finalizing my decision.

But Robert, family, and friends encouraged me to proceed with Baltimore conference plans. And so I did.

Banquet keynote on stage

In May, I made a flight reservation, ordered 110 “Always an Advocate” books to give away at the banquet, requested an accessible room with a roll in shower and lowered bed, and accepted the LPA Historian’s invitation to videotape an oral history one hour interview. The bonus was the historian’s agreement to reserve Wheelchair Accessible Van rides to and from the airport to the hotel.

With all my extra duties involving Robert’s care, the preparation of my 20 minute speech was spread out over several weeks. In recognizing that banquet guests do not sign up to be lectured and would hope to be entertained, I wrapped my points into bite size packages with lots of stories. I avoided details that take too much concentration.

It remains to be seen how many people rise to my challenge to “be an advocate for positive change.” But judging by the many favorable comments I received after the speech and the number of people lining up to have their gift book autographed, I’m hopeful that LPA members will care enough to do something, remember change is possible, and go out together to change the world.

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Categories
Celebrations

Fourth Year Blog Anniversary Favorites

Stars Gerd Altmann

Accessibility

Fed Up With FedEx. April 22, 2024. https://angelamuirvanetten.com/fed-up-with-fedex/

MEDICAL DIAGNOSTIC EQUIPMENT: Proposed for State and Local Government Entities. January 15, 2024. https://angelamuirvanetten.com/medical-diagnostic-equipment-proposed-for-state-and-local-government-entities/

Awareness

Dwarfism Memoir Trilogy Punctuated with Triple Threads. August 7, 2023. https://angelamuirvanetten.com/dwarfism-memoir-trilogy/

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Disability Rights

Are We There Yet? [ADA compliance issues] January 29, 2024. https://angelamuirvanetten.com/are-we-there-yet/

Special Education Mandate Honored. December 4, 2023. https://angelamuirvanetten.com/special-education-mandate-honored/

Van Accessible Parking Predicament. November 13, 2023. https://angelamuirvanetten.com/van-accessible-parking-predicament/

Is Dwarfism a Disability Under the ADAAA? September 25, 2023. https://angelamuirvanetten.com/is-dwarfism-a-disability-under-the-adaaa/

FAQ

What’s It Like To Be Little? March 18, 2024. https://angelamuirvanetten.com/whats-it-like-to-be-little/

Medical

Kitchen Table or ICU Decisions? April 15, 2024. https://angelamuirvanetten.com/kitchen-table-or-icu-decisions/

GLAUCOMA: the Silent Thief of Sight. January 8, 2024. https://angelamuirvanetten.com/glaucoma-the-silent-thief-of-sight/

PHYSICAL THERAPY: Move and Improve. September 18, 2023. https://angelamuirvanetten.com/physical-therapy-move-and-improve/

Crashing Into My 70th Birthday. August 28, 2023. https://angelamuirvanetten.com/crashing-into-my-70th-birthday/

Motivation

Get Up and Never Give Up. February 5, 2024. https://angelamuirvanetten.com/get-up-and-never-give-up/

Transportation

Disabled Scooter Airport Story. September 25, 2023. https://angelamuirvanetten.com/disabled-scooter-airport-story/

Image Credit: Gerd Altmann from Pixabay

To subscribe to my weekly blog—a voice for people with dwarfism & disability guided by faith and justice—go to https://angelamuirvanetten.com/blog/.

Categories
Open

Review and Revise

Blog

Four years ago in July, my first blog post was uploaded. I even guaranteed to remember the first person to write a comment. Thanks to Donna H. for being first and to all the commenters that followed with encouragement and expertise.

I prayed that this blog would be a positive experience for readers and help bring me closer to those who share my passion. If the eight guest posts and 446 comments on 200 plus posts are any indication, I’d say these prayers have been answered.

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My motivation for writing this blog is to be a voice for people with dwarfism and other disabilities, guided by faith and justice. I have ventured to do this by incorporating excerpts from my dwarfism memoir trilogy—Dwarfs Don’t Live in Doll Houses, Pass Me Your Shoes, and Always An Advocate—and writing original material related to calendar events, my activities, and issues crying out for attention.

Readers can subscribe to the blog or see links to posts on social media. It’s a great boost when posts are shared in a reader’s own network. Totally unexpected was the thrill of Feedspot selecting my blog as one of the Top 100 Disability Blogs on the web! As a result, a link to one of my posts is regularly featured in a Feedspot email.

It’s hard to predict how well a post will be received. Sometimes I’m surprised when a post either garners no response or racks up numerous comments. I’ve concluded that people relate best to posts with personal stories. This is apparent from three posts with the most comments:

  • First: First Time (July 27, 2020).
  • Second: Crashing Into My 70th birthday (August 28, 2023).
  • Tied for third:
    • Finding Hugo (September 26, 2022).
    • Celebrate People Blessed with Down Syndrome (March 22, 2021).

Writing a weekly post has been challenging for many reasons, but I’ll only mention two. On the health front Robert and I both had a brush with death and stint in ICU. Robert for end stage renal disease requiring dialysis three times a week, and me for COVID-19 that put me into a coma. We have also weathered multiple surgeries. For me it was about the eyes—cataracts, laser, and vitrectomy leaving me totally blind in my left eye; for Robert it was about his bladder. Physical therapists have worked with Robert at home off and on to strengthen his legs to stop falling and regain mobility. Despite best efforts, Robert no longer drives and I don’t drive at night. I have also picked up the caregiver role for his personal and medical needs.

The second time guzzler relates to publication of my dwarfism memoir trilogy. Writing was the easy part, but connecting with readers involves book launches, book reviews, media interviews, presentations, and networking—all necessary but time consuming tasks.

I mention all this as background to my decision to reduce the frequency of future posts from weekly to the first and third Mondays. This will ease scheduling pressure and increase post quality.

Image credit: Peggy und Marco Lachmann-Anke from Pixabay

You can read past posts or subscribe to future posts on Angela’s blog at https://angelamuirvanetten.com/blog/.

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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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!”

To dig deeper, go to:

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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