Category: Inclusion

adversely and disproportionately impacted and at higher risk of dying during disasters, older adults and people with disabilities are often excluded from the planning process. This needs to change!

Integrating people with disabilities in emergency drills and exercises is a good place to start. June Isaacson Kailes, a disability policy consultant, provides practical guidance on how to make this happen (see citation at the end of this post):

1. Recruit qualified disability subject matter experts based on experience living with a disability or implementing equal access and compliance with the Americans with Disabilities Act;

2. Use people with actual disabilities not nondisabled actors;

3. Get participant feedback about what worked, didn’t work and what needs to work;

4. Budget for accommodations like handouts in alternative formats or sign language interpreters. Consider helping with the costs of transportation, personal assistants, and support people;

5. Choose an accessible location i.e. near a public transportation stop with accessible restrooms, meeting facilities, and staging area;

6. Schedule the exercise when public transportation is available; and

7. Garner feedback from disabled participants on the exercise and draft After Action Report.

Failure to follow these guidelines can result in flawed plans based on disability stereotypes and misconceptions. Also deaf or mobility impaired recruits may bail on an exercise if unable to understand an unqualified interpreter unfamiliar with the terms being used or unable to use an inaccessible bathroom.

Kathie, a blogger who is blind and participates in local emergency response drills every four years, observes that responders are good caring people, but may lack training on disability dos and don’ts. She encourages people with disabilities to volunteer to be victims and uses her participation to educate responders on disability etiquette. Her top three tips to responders are (1) don’t separate me from my service dog, but if you have to, hold his leash at all times; (2) don’t grab and manhandle me—tell me what you’re doing instead; and (3) don’t push me in front of you—let me take your elbow.

There’s a bill pending in both houses of Congress that addresses these issues—the Real Emergency Access for Aging and Disability Inclusion (REAADI) for Disasters Act Senate (S. 1049) and House (H.R. 2371). Please contact your representatives to solicit support for this law which protects the health, safety and independence of people with disabilities during a disaster.

You may also want to read:

• J.I. Kailes. “Guidance for Integrating People with Disabilities in Emergency Drills and Exercises.” Edition 2, 2020. http://www.jik.com/pubs/Guidance-Drills-Exercises.pdf
• U.S. Senator Bob Casey. “The REAADI (Real Emergency Access for Aging and Disability) Disasters Act. March 29, 2023. https://reaadi.com/wp-content/uploads/2023/03/REAADI-118th-one-pager-3.29.23.pdf  
• National Disability Rights Network. “NDRN thanks Congressmembers for their introduction of the Real Emergency Access for Aging and Disability Inclusion for Disasters (REAADI) Act.” April 24, 2023. https://www.ndrn.org/resource/thanks-reaadi/?eType=EmailBlastContent&eId=a66c885d-feed-478b-9aae-857130cdf3e3
• National Council on Disability. “The Impacts of Extreme Weather Events on People with Disabilities.” May 4, 2023. https://ncd.gov/publications/2023/impacts-extreme-weather-events-people-disabilities
• Angela Muir Van Etten. “Plan to Stay Safe.” Blog post. April 26, 2021. https://angelamuirvanetten.com/plan-to-stay-safe/
• Angela Muir Van Etten. Dwarfism Memoir Trilogy. https://angelamuirvanetten.com/books/

People with various disabilities—vision, brain, neurological, cognitive—have access to books without using their eyes to read, hands to turn pages, or mind to process written words. They are included among readers who listen to audiobooks for entertainment, relaxation, escape, and learning new things. And they listen while commuting, doing housework, exercising, and walking, among other things.

Because audiobooks are the fastest growing segment in publishing, I had two reasons for releasing Always an Advocate: Champions of Change for People with Dwarfism and Disabilities in the audiobook format—inclusion of people with disabilities and market demand.

Partnership with my friend Barry Grant Marsh, a veteran broadcaster and advertising marketing executive, made this possible. Under Barry’s tutelage, I followed the path of many nonfiction authors and narrated the book myself.

After laboring together for many months, Barry and I are thrilled to announce the publication of Always an Advocate as an audiobook. We persevered through technical challenges, medical interruptions, and learning curve issues. But with God’s help we succeeded in bringing you the opportunity to listen to this book which is endorsed by many in the disability community:

“And when a righteous voice needs to be amplified, Angela rose to the challenge time and time again. Her seemingly endless supply of energy comes from her faith in God and her love of the underdog.” ~ Bill Klein, Co-Star of TLC’s Little Couple

“Be inspired and encouraged by Angela’s determination to take on all challenges, and eventually overcome and master them with an ample dose of faith and humor.” ~ Genevieve Cousminer, Esq., former Director of the Coalition for Independent Living Options

“You will learn a lot about the challenges that dwarfs face in their everyday lives — and about the life and activism of this remarkable woman.” ~ Dan Kennedy, Author of Little People: Learning to See the World Through My Daughter’s Eyes

“I am proud to be in the same company as Angela Van Etten [who] contributed in countless ways to the advancement of the dwarfism community, the disability community, and the broader community.” ~ Gary Arnold, LPA Past President

“This book offers the reader a grand tour of local, state, and federal opportunities for advocacy. The only requirement is passion, dedication, a thick skin, patience, and a sense of humor.” ~ Jim Kay, LPA Historian

The Always An Advocate audiobook is available on Amazon, Audible, and iTunes. Click on the link for more information, https://angelamuirvanetten.com/always-an-advocate/, listen to a retail sample, and get your copy today.

And One More Thing: If you’d like to receive a promo code for a free copy in exchange for a fair and honest book review, please email me at angela@angelamuirvanetten.com.

Disturbing for Facebook, but why should people with disabilities care? The same reason as the other three billion users! We count.

Because Facebook allows anyone with an email address and real-life identity to have an account, users with disabilities are included without typical exclusionary barriers. As a result, we are among the multitudes affected by Facebook’s foibles and fumbles. So as Facebook presumably reflects on its’ path forward, users need to reflect on how we spend our time on Facebook.

Let’s start with appreciating what Facebook does for users:

• Dissolves global boundaries and connects users ready to share what’s happening in our lives.
• With Facebook’s 2016 shift toward meaningful communities, organizations like Little People of America and people with dwarfism contribute to the count of ten million groups. People with dwarfism and their associates join various groups in which they receive news, support, ideas, answers to questions, et al. For example, an advocacy group solicits action on cultural and social issues negatively impacting people of short stature, such as “midget” as a descriptor of products, dehumanizing entertainment like dwarf tossing, and barriers in the built environment.
• Safety Check allows people in or near disaster sites to confirm they’re safe after a blizzard, fire, flood, hurricane, mass shooting, or other emergency.

At the same time, we are individually responsible to protect ourselves from the dangers inherent in social media use. We can’t count on Facebook to protect our privacy. So share wisely. Let’s not be among the plus 50% who post their email address or 20% who share their phone number online.

Evaluate the veracity of what you read. Facebook has been blamed for spreading false stories and fake news on things like elections and vaccination rates. And be aware that five percent of Facebook accounts are fake.

Don’t be manipulated by Facebook algorithms that can influence how we express ourselves. For example, in 2018, Facebook allegedly tweaked its algorithm to encourage angrier content. Remember “Pleasant words are a honeycomb, sweet to the soul and healing to the bones.” Proverbs 16:24 (New American Standard Bible)

Regulate your Facebook time to avoid addiction (more than 4 hours each day), loss of meaningful real-life experiences, and exacerbating depression. Let’s take a Facebook holiday when our use negatively impacts how we feel or behave.

            So what’s your experience with Facebook?

For information on subscribing to my weekly blog and ordering books in my dwarfism trilogy, go to https://angelamuirvanetten.com/books

DWARFISM TRILOGY VALENTINE’S SPECIAL: email me at angela@angelamuirvanetten.com to request all three books autographed—Dwarfs Don’t Live in Doll Houses, Pass Me Your Shoes, and Always an Advocate—for $20, plus $4.00 postage.

Churches are a haven for God’s people and a target for those who hate them. As a result, responsible churches have taken Jesus words to heart:

“Look, I’m sending you out like sheep among wolves. Therefore, be as shrewd as serpents and as harmless as doves.” ∞ Matthew 10:16 (Holman Christian Standard Bible).

Knowing that Satan will do whatever he can to destroy a church, shrewd leaders have taken many steps to keep parishioners safe—mandatory criminal background checks for children and youth workers, safety patrols barring entry of unauthorized people during Vacation Bible School, and volunteers trained to counter an active shooter, to name a few.

In the COVID-19 pandemic, safety involves six feet social distancing, frequent hand washing, and wearing cloth face masks. So why would a church reopen after a mandatory lockdown to slow the spread without a key element of government safety protocols—asking people to wear face masks? Is it political, a distrust of the government and media, an expression of personal freedom, or something else? Whatever the reason, this choice does not meet the “harmless as doves” standard.  It forces high-risk people—due to disability, being age 65 or older, or both—who depend on others to wear masks, to keep a safe distance at home.

According to the Centers for Disease Control, without a cloth face covering, a person in close proximity to another can spread the virus through their mouth or nose when they breathe, speak, or sing. Even with a social distancing policy, people still get close to each other when they bunch together in a line, pass each other in a hallway, or are together in a bathroom.  

Individual decisions not to wear a mask have the effect of excluding high-risk people from church and run counter to God’s law of liberty and love discussed in Romans 14. Paul talked about different beliefs on eating and honoring special days that resulted in church members judging and despising one another. He reminded believers that they do not live for themselves and asked them not to put a stumbling block or hindrance in the way of a brother.

Today people have different beliefs on wearing face masks. And we need to consider that those who believe they are free not to wear a face mask are hurting members who believe they cannot attend church as a result. ^”For you have been called to live in freedom, my brothers and sisters. But don’t use your freedom to satisfy your sinful nature. Instead, use your freedom to serve one another in love.” ∞ Galatians 5:13 (New Living Translation)

Together we can make church a safe place for everyone. Look for the October release of my book—PASS ME YOUR SHOES: A Couple with Dwarfism Navigates Life’s Detours with Love and Faith—which discusses what happens when God intervenes in a marriage complicated by dishonesty, dwarfism, discord, and discrimination. The story speaks to the hearts of everyone, regardless of their differences, difficulties, or legal status.