Month: March 2022

Categories
Accessibility Medical

Tackling Inaccessible Medical Equipment, Part II

Cirrus DME

My first post on inaccessible medical equipment was April 19, 2021 before and after cataract surgery. Lamentably, a subsequent diagnosis of a hole in the macular mandated surgery and further access to diagnostic eye equipment. Once again, I was confronted by equipment incompatible with my height of three feet four inches.

Although two reams of copy paper enabled me to mount a chair in front of an eye scanner, I was still short of the chin rest. One imaging technician, citing rules against lifting me, suggested skipping the scan. Too bad that this would leave the surgeon without critical information for diagnostic decisions! Clearly, this was not an option.

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All I needed was another couple of inches. So I asked the technician to get another ream of paper. She complied because she had no idea what to do. I leaned left raising my right buttock cheek off the seat and had the technician slide the third ream under this side of my butt. After placing my right cheek on the ream, I asked her to push it to the other side of the chair while I scooted my left cheek onto the ream. And voilà, my torso was raised within reach of the chin rest, and the surgeon got his scan.

My annual cardiology check of my Top Hat mechanical aortic valve is also an occasion for confronting access barriers. Although the electrocardiogram (EKG) and echocardiogram equipment are accessible, the examination table is not. The technologist told me that the office did not have an accessible table because it cost $5,000 compared to the $1,500 for a regular table. The accountants won.

As a result, I declined to climb onto the exam table for the EKG and had the test while seated in a chair. The echo was a different story. Although it could be done with me seated, the result would be more accurate if I lay on the table. Here I surrendered my independence and, with assistance, climbed onto a stool then a chair and up to the table.

I’m only one of thousands, possibly millions, of people with disabilities being denied independent access to medical diagnostic equipment (MDE). So where do we go to file a discrimination complaint? The answer is NOWHERE.

Although the Architectural and Transportation Barriers Compliance Board (Access Board) technical criteria for medical diagnostic equipment (MDE Appendix to 36 CFR Part 1195) was due to expire in February 2022, the rule was extended for three years. The Board sought additional time to complete research on low transfer heights. However, the MDE rule remains unenforceable under the Americans with Disabilities Act (ADA) or Rehabilitation Act because it has not been adopted by the United States Departments of Justice (DOJ) and Health and Human Services (HHS).

So instead of filing a complaint, advocate for the Access Board to expedite the research so that accessible MDE can be mandated by enforcement agencies. And share your experiences on inaccessible MDE with Attorney Advisor Wendy Marshall, (202) 272-0043, marshall@access-board.gov.

For further reading, see Standards for Accessible MDE. A Rule by the Access Board. February 3, 2022. https://www.federalregister.gov/documents/2022/02/03/2022-02133/standards-for-accessible-medical-diagnostic-equipment For discussion of diverse disability issues, follow Top 100 Disability Blogs and Websites at https://blog.feedspot.com/disability_blogs/ You can follow my blog on feedspot or at my website, https://angelamuirvanetten.com.

Categories
Etiquette

Renounce Common Discourtesy, PLEASE

book

As much as it annoys me when people forget to say “please” and “thank you,” today I ask people to use common courtesy when encountering someone with dwarfism or another disability. So in honor of March 21st, National Common Courtesy Day, please renounce the following common discourtesies, today and always.

1. Staring or Finger Pointing

An overwhelming majority of people with dwarfism suffer from strangers pointing fingers and piercing eyes that won’t let go of their gaze. The sight of someone so short is more than they can handle politely. This unsolicited attention is not only rude, but also can discourage people from going out in public and makes us uncomfortable when we do venture out.

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2. Ridiculing

Recently, a Paralympic swimmer from Great Britain made headlines when he said he was “sick to death” of being laughed at on the street because of his dwarfism. When he spoke out against the ridicule he had been subjected to his whole life, he tapped into a ground swell of public support for his inclusion and respect. His experience resonates with many people of short stature engaged in the same fight.

3. Touching

According to one study, one third of people with dwarfism have been physically touched by strangers in public. We have been patted on the head for good luck, to see if we are real, or in the manner used to greet a child. Some even try to pick us up without permission. This is both discourteous and dangerous. So don’t even think about it.

4. Spacing

Invading personal space is incredibly disrespectful. However, it’s not uncommon for people to discount my presence and encroach on the space immediately above my head. They might reach over my head to shake hands with someone in front of me or to get food from a buffet table beside me. The drip from a spoon passing overhead adds insult to injury.

During COVID-19 restrictions, physical distancing was recommended. But it’s both obnoxious and reprehensible when the noncompliant close the gap and put those unable to be vaccinated at high risk for infection. Although restrictions have been lifted in many places, COVID is still killing people. So please step back when asked to do so.

5. Talking

Researchers have reported that three-quarters of people with dwarfism have been verbally abused. Names like hunchback, midget, runt, stumpy and dolly are derogatory, demeaning, and worthy of disdain. Delete them from your list of adjectives for little people. And don’t tolerate it when your friends use such crass vocabulary.

6. Filming or Photographing

The “take a picture it lasts longer” retort to someone staring at you is risky. The person could whip out their cell phone, snap a photo, or take a video. Many take pictures of us when they think we’re not looking. This alarming trend is exacerbated by fears that the photos will appear on social media hate sites or as trophies on personal pages. Don’t click and definitely don’t post.

Thanks in advance for exercising common courtesy.

For further discussion, read “Dwarfs Don’t Live in Doll Houses,” https://angelamuirvanetten.com/dwarfs-dont-live-in-doll-houses/ chapter 3, Educated; chapter 6, Attitudes Disable; and chapter 9, Attention Gives Opportunity.

Categories
Inclusion

Inclusion via Audiobooks

Recording Session
Production engineer, Barry Marsh wearing headphones and glasses, sits in front of his computer screen which displays recording sound waves. He is looking at the author and narrator, Angela Van Etten, who is seated next to him facing her laptop screen which displays the Epilogue. Angela reads out loud from the screen using the microphone in front of her. Barry listens carefully for voice clarity, expression, pace, and recording quality.

My first introduction to talking books was as a child listening to books with my great grandmother. Her vision loss qualified her for the Royal New Zealand Foundation of the Blind talking book service. So when I authored Dwarfs Don’t Live in Doll Houses in 1988, I naturally gave permission to the Library of Congress to read the book for their talking book library service.

Fast forward 34 years to a marketplace that lets all readers listen to books using mobile phones, tablets, and computers. Access to audiobooks is no longer limited to people with vision impairments and audiobooks are commercially available to everyone (except those with a hearing impairment).

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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.

Categories
International

Remember Ukrainians with Disabilities

ukraine flag dove

Invasion. Call to arms. Mass exodus. Air raid sirens. War crimes. Nuclear war threat. None of this crossed my mind when planning today’s blog post. But unprovoked Russian aggression against Ukraine compelled me to write about the greatest unleashing of evil since World War II.

Horrific scenes in the hourly news cycles are hard enough to bear, but are only a glimpse of the horror. The agony imposed on the estimated 2.7 million people with disabilities is unimaginable.

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  • How many will die due to medical facilities—once used for treating life threatening conditions like cancer, organ failure, and COVID-19—being converted to emergency care for the injured?
  • How many will die due to starvation and unavailability of medications?
  • How are people with intellectual or mental health impairments coping with the trauma?
  • How do wheelchair users exit high rise buildings when power outages shut down elevators and how do they get downstairs into basements and bomb shelters?
  • How do those using power wheelchairs and respiratory equipment charge their batteries?
  • Who will pay for wheelchair accessible vehicles to transport their users to safety across the border?
  • Who will help the tens of thousands of children with disabilities living in orphanages and institutions?
  • How do people needing personal care services find a replacement for a caregiver who has evacuated the country?
  • Where will refugees needing accessible accommodation find shelter?
  • How many will acquire disabilities as a result of the war?

Sanctions, military supplies, solidarity and support have come from world leaders, cities, charities, and individual citizens. Flying the Ukrainian flag and sunflower displays are laudable, but do nothing to help civilians fleeing with their children and pets and “farewelling” loved ones who must stay behind to fight. So what can we do?

First and foremost we can pray for God’s intervention—He can make the impossible happen. History attests to this. In ancient times, the Israelites often defeated enemies with greater military strength. Well known examples include the defeat of Egypt led by Moses (Exodus 14), Midian led by Gideon (Judges 7), and Jericho led by Joshua (Joshua 6). Modern day examples include national days of prayer and fasting during World War II when British soldiers were trapped at Dunkirk, Hitler planned to invade Britain, and prior to D-Day.

Today as Ukraine confronts an enemy more powerful and numerous, let’s pray for God to hear their cry and intervene on their behalf. May God give President Zelensky and the Ukrainian people courage and confidence to fight under His command.

            Second we can give to charities with an established track record of working in Ukraine for people with disabilities. On this front, I support Joni and Friends International Disability Center. A regional in-country coordinator and her team have already proved their effectiveness by boldly evacuating 35 people with severe disabilities and their families and caregivers across the border into Poland. As they plan more rescues, they seek our prayers and ask us not to forget Ukrainians with disabilities.