Angela Muir Van Etten

@angela9151991 | contributor
As a dual citizen of New Zealand and the United States, Angela Muir Van Etten qualified as a lawyer in both countries and served as national president of both Little People organizations. Married for more than 40 years, Angela and her husband are both about 40 inches tall and live in Florida where they are active church members. Angela is the author of a dwarfism memoir trilogy: (1) Dwarfs Don't Live in Doll Houses; (2) Pass Me Your Shoes; and (3) Always an Advocate. For discussion of diverse disability issues, go to Angela’s website https://angelamuirvanetten.com for links to her weekly blog and book trilogy.

6 Things Not to Do When You See Someone With Dwarfism

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. Please renounce the following common discourtesies, today and always. 1. Staring or Finger Pointing An overwhelming majority of people with dwarfism regularly experience strangers pointing fingers and piercing eyes that won’t let go 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. 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 groundswell 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 non-compliant 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. Rude Comments 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 people 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.

Long COVID-19 and Disability Under the Americans with Disabilities Act

Two years after COVID-19 was first detected, the global COVID-19 pandemic has infected more than 300 million people, claimed the lives of almost 5.5 million, and changed the lives of everyone in the world. Scientists and the public are learning more about the virus, but so much more still remains a mystery. Surprisingly, long COVID-19 — also called “post-acute COVID-19” or “chronic COVID-19 — has emerged as a disease with a wide range of new, returning, or ongoing health problems experienced more than four weeks after an initial COVID-19 infection. Even asymptomatic people can later present with long COVID-19. Dr. Devang Sanghavi, a critical care medicine specialist, breaks long COVID-19 into three categories of symptoms: direct cell damage preventing full recovery; chronic hospitalization due to being in the hospital, the ICU, or in bed for weeks, and post-recovery onset. The five most common symptoms of long COVID-19 are fatigue, headache, brain fog, hair loss, and shortness of breath. Other symptoms are related to the lungs (cough, chest discomfort, sleep apnea, and pulmonary fibrosis), the cardiovascular system (arrhythmias and myocarditis), and the nervous system (dementia, depression, anxiety, and obsessive-compulsive disorder). In light of the rise of long COVID-19 as a significant health condition, the United States Office for Civil Rights of the Department of Health and Human Services (HHS) and the Civil Rights Division of the Department of Justice (DOJ) published a joint guidance in July 2021. The guidance explained that long COVID-19 may be considered a disability under the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act, and Section 1557 of the Affordable Care Act if it “substantially limits one or more major life activities.” It also recognized long COVID-19 as a physical or mental impairment based on a physiological condition affecting one or more body systems — given the damage it causes to multiple organs including the heart, lungs, kidneys, skin, and brain. The guidance found that a person with long COVID-19 can be substantially limited in the following major life activities: Respiratory function due to shortness of breath, fatigue, and related effects. Gastrointestinal function due to intestinal pain, vomiting, and nausea. Brain function, concentrating, and/or thinking. Consequently, people whose long COVID-19 qualifies as a disability are entitled to the same protections from discrimination as any other person with a disability under the ADA, Section 504, and Section 1557 — they are entitled to full, equal opportunities to participate in and enjoy all aspects of civic and commercial life. This means that businesses or state or local governments may sometimes need to make changes to the way they operate to accommodate the effects of a person’s long COVID, such as: Providing additional time on a test for a student who has difficulty concentrating. Modifying procedures so a customer who is too tired to stand in line can announce their presence and sit down without losing their place in line. Providing refueling assistance at a gas station for a customer whose joint or muscle pain prevents them from pumping their own gas. Stay tuned for further research results on the prevalence and longevity of long COVID-19. This condition can cause a variety of long-term health effects, and it may be a disability that requires accommodations under the Americans with Disabilities Act.

How to Take Action Against ADA Access Violations

Thirty years after the effective date of the Americans with Disabilities Act (ADA) on January 26, 1992, I didn’t expect to read about an accessibility nightmare. But that’s exactly what a Little Person wrote about her recent experience trying to order fast food from a McDonald’s self-serve kiosk. The menu graphics on the screen were too high for her to click on! And from there, this Facebook conversation expanded to stores’ out-of-reach point-of-sale terminals. Commenters reported a store raising the height of all their terminals when it remodeled three years ago and, when asked to lower the terminals, other stores either refused or did nothing despite agreeing to look into it. The need for a store cashier to enter the order or read the information on the checkout screen clearly did not compensate for the loss of independent use of the equipment. Instead of fuming about ongoing access denials and being unwilling to accept the status quo, group commenters shifted gears into problem-solving. Why accept what doesn’t need to be? Doesn’t the ADA mandate an accessible height for point-of-sale terminals? How do we find out the required height? Where do we get the documents to print and show store managers? Being part of this conversation was just the nudge I needed. I had long planned to write about ADA enforcement procedures for public accommodations. And here right in front of me was a group motivated to take action. I provided them with the link to the ADA Standards Adopted by the U.S. Dept. of Justice (2010) and U.S. Dept. of Transportation (2006). Armed with this document the group now knows that an accessible terminal height is no more than 48 inches (ADAAG §§308.2 forward reach, 308.3 side reach, and 309.3 height of operable parts). A suggestion to carry a tape measure to document the height of these inaccessible screens or terminals was followed by another question. Who do we contact after we measure? In other words, if operable parts on out-of-reach equipment violate the ADA by measuring more than 48 inches and stores refuse to comply, who has the authority to enforce the law? The answer lies in ADA Title III regulations 28 CFR §§36.501 to 36.503 which gives authority to both the person subjected to disability discrimination and the U.S. Dept. of Justice (DOJ). The individual can either make an official complaint to the DOJ (see instructions here) or file a private lawsuit against the store. However, given the large volume of ADA complaints from people throughout the United States, a DOJ review can take up to three months. Alternatively, the DOJ can investigate a complaint, intervene in an individual’s private lawsuit in cases of general public importance, or initiate a compliance review. Settlement negotiations are often used to resolve disputes. In appropriate cases, the United States Attorney General may file a lawsuit in federal court and obtain civil penalties of up to $55,000 for the first violation and $110,000 for any subsequent violation. So are you ready to challenge the access violations that limit your independence? To dig deeper, you can read the ADA Accessibility Standards and ADA Title III Regulations.

Community Voices

End Disability as Reason to Terminate Pregnancy

“This is one that should never have been born! whispered the Director of Nursing on August 3, 1953.” This opening line in Dwarfs Don’t Live in Doll Houses, the first memoir book in my #Dwarfism trilogy, illustrated the prevailing view of people towards babies born with disabilities, especially infants like me who were expected to die. Thankfully my birth preceded prenatal testing and a mother’s choice to terminate a pregnancy based on disability. I was born alive and successfully fought for the life God gave me.

Fast forward 68 years and the negative attitude towards disability births persists. The difference is that today prenatal test results can alert an expectant mother of her baby’s disability in the second or third trimester. And eugenics laws allow a mother to have a late-term abortion.

Estimates of how many pre-born children are terminated by reason of their disability range from 0.59% to 3%. Based on U.S. Center for Disease Control data of 629,898 legal induced abortions in 2019, this adds up to terminations of anywhere from 3,716 to 18,897 disabled babies per year. This many deaths for any other reason would count as a catastrophe warranting annual vigils and memorials of a 911 caliber. Instead a pre-born child celebrated at a baby shower one week is dehumanized and discarded as fetal refuse the next week.

Nonetheless there is good news on two fronts of a prenatal disability diagnosis. First, many mothers continue their pregnancy. For example, one couple attended a Little People of America (LPA) meeting to better understand what life would be like for their pre-born son diagnosed with #Dwarfism. LPA encouraged them at the meeting and maternity hospital after their son was born.

Second, between 2019 and 2021, several states banned abortions by reason of disability:

Arizona, Kentucky, and Mississippi prohibited abortions because of genetic abnormality.
Arkansas, Indiana, Kentucky, Missouri, North Dakota, Ohio, South Dakota, Tennessee and Utah specifically called out #DownSyndrome (Ds) as an unlawful reason for an abortion given a U.S. abortion rate of about 67% for Ds.

Although some courts have blocked these bans from going into effect, the final outcome could depend on the Supreme Court of the United States (SCOTUS) decision in Dobbs vs. Jackson Women’s Health Organization expected in or about June 2022.

Hailed as the most important abortion case in 30 years, Dobbs gives SCOTUS the opportunity to overturn Roe v. Wade (1973) and Planned Parenthood v. Casey (1992) which preclude a state’s interference with a woman’s choice to have an abortion prior to viability (about 24 weeks). The State of Mississippi law prohibiting abortion after the 15th week of pregnancy, except in cases of medical emergency or severe fetal abnormality, is a direct challenge to Roe v. Wade. When lower courts in Dobbs found the Mississippi law unconstitutional, SCOTUS accepted Mississippi’s petition for review.

So what can we do to preserve the lives of pre-born babies with a disability? Pray that SCOTUS justices will have the courage to ban abortions by reason of disability!

For information on subscribing to my weekly blog and ordering books in my #Dwarfism trilogy, go to angelamuirvanetten.com.

Breaking the 'Reach Barrier' for People With Dwarfism and Disabilities

Characterized as the biggest state and local building code change in 20 years, October 8, 1997 is a date few know to commemorate. This is when the ICC/ANSI A117.1 Committee on Accessible and Usable Buildings and Facilities broke the six-inch reach barrier. Lowering the standard from 54 to 48 inches in new or altered buildings and facilities made ATMs, gas pumps, elevators — everything activated with a push, pull or turn — accessible to people with dwarfism and half a million others whose disability involves a reach limitation. Little People of America proposed the change in 1994 after becoming a committee member in the consumer category as one of 10 disability organizations requiring accessibility. Other categories include building owners and operators, producers/distributors of manufactured products, professional organizations, regulatory agencies, and building code officials. As the delegate representing LPA, I learned the committee had no appetite for our proposed changes. But after a vigorous debate in February 1996, the committee agreed to place 48 inches in the second draft revision of the ANSI Access Code — the key word being draft. In the fall of 1996 and spring of 1997, the Committee considered public comments and negative ballots filed on the draft. The American Bankers Association and manufacturers of gas pumps and vending machines joined the Building Owners and Manufacturer’s Association in opposition to the 48-inch change. Given the size and economic power of these opponents, a David and Goliath battle was imminent. It seemed there was no hope for change. Experienced disability advocates were concerned that our early victory of getting 48 inches into the draft was about to slip away. Delegates were under a lot of pressure to change their early votes in support of the change. But I used my arsenal of weapons: preparation, persuasion, and prayer. And I believed God could move the hearts of committee members to retain 48 inches. After a five-hour battle, the room was quiet as the votes were carefully counted: 18 for 48 inches, 13 in favor of 54 inches, and seven abstentions. Victory. I attributed the triumph to divine intervention. How else do you explain the force that withstood three of the most powerful industries in the nation — banking, oil, and retail? In a surprising move, the committee met again in October 1997. Once again I had to argue for lowering the reach standard from 54 to 48 inches. I didn’t think I could handle going through another battle. In my anguish, I called Robert to put this on our church prayer chain. God was faithful, and the committee chairperson limited the debate to a recap of the main issues and only allowed the clock to run for one hour. After the fifth and final debate on LPA’s proposal, the victory was more decisive — 22 votes for 48 inches, eight votes in favor of 54 inches, and only two abstentions. Many little people have said they think of me every time they use an ATM, but I think of God’s grace, power, and justice. I believe He deserves the credit for making the impossible happen. This post was dedicated to Marilyn Golden, former Senior Policy Analyst for the Disability Rights Education and Defense Fund. Marilyn was LPA’s strongest ally on the Committee and used her legendary advocacy skills to garner support for LPA’s 48-inch proposal. I’ll be forever indebted to Marilyn for taking me under her wing to understand the process, know who to trust, and lead by example.

Breaking the 'Reach Barrier' for People With Dwarfism and Disabilities

Characterized as the biggest state and local building code change in 20 years, October 8, 1997 is a date few know to commemorate. This is when the ICC/ANSI A117.1 Committee on Accessible and Usable Buildings and Facilities broke the six-inch reach barrier. Lowering the standard from 54 to 48 inches in new or altered buildings and facilities made ATMs, gas pumps, elevators — everything activated with a push, pull or turn — accessible to people with dwarfism and half a million others whose disability involves a reach limitation. Little People of America proposed the change in 1994 after becoming a committee member in the consumer category as one of 10 disability organizations requiring accessibility. Other categories include building owners and operators, producers/distributors of manufactured products, professional organizations, regulatory agencies, and building code officials. As the delegate representing LPA, I learned the committee had no appetite for our proposed changes. But after a vigorous debate in February 1996, the committee agreed to place 48 inches in the second draft revision of the ANSI Access Code — the key word being draft. In the fall of 1996 and spring of 1997, the Committee considered public comments and negative ballots filed on the draft. The American Bankers Association and manufacturers of gas pumps and vending machines joined the Building Owners and Manufacturer’s Association in opposition to the 48-inch change. Given the size and economic power of these opponents, a David and Goliath battle was imminent. It seemed there was no hope for change. Experienced disability advocates were concerned that our early victory of getting 48 inches into the draft was about to slip away. Delegates were under a lot of pressure to change their early votes in support of the change. But I used my arsenal of weapons: preparation, persuasion, and prayer. And I believed God could move the hearts of committee members to retain 48 inches. After a five-hour battle, the room was quiet as the votes were carefully counted: 18 for 48 inches, 13 in favor of 54 inches, and seven abstentions. Victory. I attributed the triumph to divine intervention. How else do you explain the force that withstood three of the most powerful industries in the nation — banking, oil, and retail? In a surprising move, the committee met again in October 1997. Once again I had to argue for lowering the reach standard from 54 to 48 inches. I didn’t think I could handle going through another battle. In my anguish, I called Robert to put this on our church prayer chain. God was faithful, and the committee chairperson limited the debate to a recap of the main issues and only allowed the clock to run for one hour. After the fifth and final debate on LPA’s proposal, the victory was more decisive — 22 votes for 48 inches, eight votes in favor of 54 inches, and only two abstentions. Many little people have said they think of me every time they use an ATM, but I think of God’s grace, power, and justice. I believe He deserves the credit for making the impossible happen. This post was dedicated to Marilyn Golden, former Senior Policy Analyst for the Disability Rights Education and Defense Fund. Marilyn was LPA’s strongest ally on the Committee and used her legendary advocacy skills to garner support for LPA’s 48-inch proposal. I’ll be forever indebted to Marilyn for taking me under her wing to understand the process, know who to trust, and lead by example.