Month: January 2022

Categories
Humor

LOL Marriage Stories

Kitchen Goggles

Communicating from a distance

Separated by 8,500 miles after our 1981 engagement called for creative, cost-effective communications. There was no Internet, e-mail, FaceTime, or texting. I sent regular microcassette tapes and letters, but heard nothing from Robert for five weeks. So I sent him a card with a clear message:

In sympathy for the loss of your pen.

Those five-minute messages he diligently recorded for me every night were all on the same tape—which he planned to mail when it was full. Can you imagine how long it takes an engineer and man of few words to fill a 90-minute tape?

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Driving in New Zealand

A quiet country road should have been a safe place for this American to practice driving on the left side of the road. However, driving on a metal (gravel) surface made it more challenging.

After telling my husband of two days to drive in the middle tracks carved out by prior traffic, I suddenly yelled, “Pull left! PULL LEFT!” I had not told him that when oncoming traffic approaches, both vehicles slow down, and pull over to their left. So when a gigantic truck suddenly rounded the corner and sped toward us in the same center tracks we were in, Robert held to his position in the center.

Somehow amid my yelling and the imminence of a head-on collision, Robert finally pulled left. The truck flew by leaving a trail of dust and our shattered nerves behind him.

Cooking

When we were first married, Robert said he liked his pea soup thick and was surprised when I obliged with soup that was so thick you could stand your spoon up in it. We had enough left over to have re-fried soup for breakfast.

I made a flaming impression on Robert’s amateur radio friend and son when they came for dinner. Just as they arrived, the meal caught on fire and flames flashed from the oven. I avoided using the fire extinguisher and salvaged the dinner, but for some reason Jim wanted us to eat at his place after that.

“Goggling” on land (not a typo)

Robert has a trademark trick for avoiding the tears when cutting onions. He wears goggles!

In 1983, I submitted two photos of Robert for the Boston, Massachusetts Little People of America conference brochure—a funny one for the planning committee’s personal pleasure and a serious one for publication. But the committee shared the joke with everyone. In the gallery of national officers, Robert sported a snorkel and goggles in contrast to the formal attire of the other officers.

Talking a mile a minute

The morning after my 2013 Aortic Valve Replacement surgery, I was alert, the intubation tube was out, and I was asking for water and my glasses. When ICU staff sat me up, I was talking a mile a minute. Robert’s sister stopped me because my surgeon was standing at the door. He said I reminded him of his wife and declared Robert a saint.

The stories in this post are edited excerpts from “Pass Me Your Shoes” available on Amazon as an e-book and a 52% discount in print. Read more at https://angelamuirvanetten.com/pass-me-your-shoes/

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.

Categories
Accessibility

Take Action Against ADA Access Violations

Measure Up

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.

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The need for a store cashier to enter the order or read 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 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 at https://www.ada.gov/filing_complaint.htm#1) 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, read ADA Accessibility Standards at https://www.access-board.gov/ada/ and ADA Title III regulations at https://www.ada.gov/regs2010/titleIII_2010/titleIII_2010_regulations.htm.

For history on how Little People of America led the charge to lower the unobstructed side-reach standard from 54 to 48 inches in federal and state law, read Chapter 15, Breaking the Six-Inch Reach Barrier, in “ALWAYS AN ADVOCATE: Champions of Change for People with Dwarfism and Disabilities.” Print, audio and e-books are available at https://www.amazon.com/dp/1737333600/.

Categories
Disability Rights

End Disability as Reason to Terminate Pregnancy

unborn

“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.

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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 Down Syndrome (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 override Roe v. Wade!

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

Categories
Disability Rights Medical

Is Long COVID A Disability Under Civil Rights Laws?

Long-Haul COVID

Two years after COVID-19 was first detected, the global pandemic has infected more than 300 million people, claimed the lives of almost 5.5 million, and changed the lives of everyone.

Much has been learned about the virus, but so much more remains a mystery. Surprisingly, Long COVID (also called post-acute COVID-19 or chronic COVID) has emerged as a disease with a wide range of new, returning or ongoing health problems experienced more than four weeks after the first COVID-19 infection. Even asymptomatic people can later present with Long COVID.

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Dr. Devant Sanghavi, a critical care medicine specialist, breaks out Long COVID into three categories of symptoms: (1) direct cell damage preventing full recovery; (2) chronic hospitalization due to being in the hospital, ICU, or bedridden for weeks; and (3) post recovery onset. The five most common symptoms are fatigue, headache, attention disorder (sometimes called “brain fog”), hair loss, and shortness of breath. Other symptoms are related to lung disease (cough, chest discomfort, sleep apnea, pulmonary fibrosis), cardiovascular (arrhythmias, myocarditis), and neurological (dementia, depression, anxiety, obsessive-compulsive disorders).

In light of the rise of Long COVID as a significant health issue, 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 can be 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 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 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 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 and equal opportunities to participate in and enjoy all aspects of civic and commercial life. This means that businesses or state or local governments will sometimes need to make changes to the way they operate to accommodate a person’s Long COVID limitations, 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 this condition.

This post was partially informed by the United States HHS and DOJ joint guidance on Long COVID published at https://www.hhs.gov/civil-rights/for-providers/civil-rights-covid19/index.html and https://www.ada.gov/long_covid_joint_guidance.pdf.

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

Categories
Disability Rights

What Happens When the Supreme Court of the U.S. Gets It Wrong?

Supreme Court

When Congress enacted the Americans with Disabilities Act (ADA) in 1990 they adopted the same definition of disability used in the Rehabilitation Act of 1973. They expected that courts would follow Rehabilitation Act caselaw when deciding who is disabled. Shockingly this did not happen. Instead courts narrowly interpreted the disability definition leaving many ADA claimants without justice.

As a result, discrimination against people with attention deficit hyperactivity disorder, bipolar disorder, blood cancer, major depression, diabetes, epilepsy, learning disabilities, multiple sclerosis, and sleep apnea went unchecked.

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A diabetic could be denied coverage due to the mitigating measure of taking insulin leading to the absurd result that an employer could refuse an accommodation request to take a break to administer insulin because the employee was not disabled!

The Supreme Court of the United States (SCOTUS) cemented this trend in two chilling cases. In Sutton v. United Air Lines, Inc., 527 U.S. 471 (1999), severely myopic twin sisters with uncorrected visual acuity of 20/200 were counted as nondisabled because their vision could be corrected with eyeglasses and contact lenses. In Toyota Motor Manufacturing, Kentucky, Inc. v. Williams, 534 U.S. 184 (2002) an employee with carpal tunnel syndrome was denied relief even though she was unable to perform manual tasks associated with her specific job. In creating a demanding standard to show disability, SCOTUS required the employee to be unable to perform tasks central to most people’s daily lives.

So how do we push back against SCOTUS decisions that allow disability discrimination to run rampant? It took several years, but Congress finally took action to reject Sutton and Toyota Motor Manufacturing, Kentucky rulings. Effective on January 1, 2009, the ADA Amendments Act of 2008 (ADAAA) reinstated a broad scope of protection for people with disabilities and made it easier for them to prove disability within the meaning of the ADA.

The ADAAA and implementing regulations retained the ADA’s basic definition of disability as an impairment that substantially limits one or more major life activities, a record of such an impairment, or being regarded as having such an impairment. However, it changed how these statutory terms should be interpreted:

  • An impairment that substantially limits one major life activity need not limit other major life activities in order to be considered a disability and is a lower threshold than “prevents” or “severely or significantly restricts.”
  • The definition of “major life activities” was expanded to include two non-exhaustive lists and is not determined by reference to whether it is of “central importance to daily life.”
  • Mitigating measures that eliminate or reduce the symptoms or impact of an impairment shall not be considered in assessing whether an individual has a disability with the exception of “ordinary eyeglasses or contact lenses.”
  • An impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active.

Congress corrective action put the ADA back on track and reminds us not to give up when courts take a wrong turn.

For additional information on the ADAAA, go to https://www.eeoc.gov/statutes/americans-disabilities-act-amendments-act-2008

For information on my books and blog, go to https://angelamuirvanetten.com.