Category: Disability Rights

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Awareness Disability Rights

Disabled Caught In Homeless Crisis

homeless man

People with disabilities make up almost one quarter of the half million plus homeless in America. And more than half of homeless veterans are disabled. So on December 21, National Homeless Persons’ Remembrance Day, let’s zoom in on the homeless crisis for people with disabilities.

Homelessness is primarily concentrated in cities. As exciting as it is for tourists to visit the likes of Boston, New York City, and Washington DC, it’s troubling to see so many homeless people sleeping on the streets.  The national rate for homelessness is 17 per 10,000; in these cities, the rate is well over 100 per 10,000. One fifth of America’s homeless population live in New York City.

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According to the United States Department of Housing and Urban Development, a person is homeless if they:

  1. Lack a fixed, regular, and adequate nighttime residence;
  2. Stay overnight at a place not ordinarily used for sleeping, such as a car, park, or bus depot;
  3. Occupy temporary residences like homeless shelters or motels paid for by the government or a charity;
  4. Live in a place not meant for human habitation; or
  5. Have nowhere to go after eviction for nonpayment of rent or mortgage, or when fleeing domestic violence and/or human trafficking.

The leading causes of homelessness—unemployment, lack of trustworthy relationships, lack of affordable housing, disability and illness, and abuse—are too complex and diverse to discuss in this post.  But here’s a light touch on disability and illness.

An illness can take away a job, health insurance, a home, and a car. A disability can prevent someone from even entering the workforce. A 2019 national study on homelessness, showed that of those living on the streets 46 percent had physical disabilities. Mental illness accounts for 25 percent of the homeless. And mental illnesses—such as post-traumatic stress disorder (PTSD), anxiety, depression, and substance abuse—reportedly affect half of all homeless veterans. Also, veterans who have PTSD often use substances as a way to cope with PTSD symptoms.

The magnitude of the crisis mandates that we take action. Sitting around and doing nothing is unacceptable. Our duty to help those in need dates back to ancient times. In the words of Asaph, we must:  

“Give justice to the poor and the orphan;
    uphold the rights of the oppressed and the destitute.”
Psalm 82:3, New Living Translation

To help you get started, here are some ideas for helping homeless people with disabilities. Acknowledge their existence. Stop walking by without making eye contact. Say hello. Smile.

Be polite if asked for money. If not comfortable giving money, direct people to a nearby food pantry, meal site, or homeless service center. Support that organization with donations of food, toiletries, clothes and blankets, tents, or whatever else is on their needs list. Volunteer.

And on a larger scale, advocate for the homeless with local businesses and elected representatives to increase resources to address the causes of homelessness and meet the need of those needing a job, training, transportation, health care, and affordable housing.

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Categories
Disability Rights FAQs Medical

Why Are You So Short? Is the Answer in the Genes?

GINA sig ceremony
White House photo by Eric Draper. 
President George W. Bush Signs H.R. 493, the Genetic Information Nondiscrimination Act of 2008 in the Oval Office. May 21, 2008.

Every day little people are asked to explain why they are so short. The answers given are often more amusing than educational:

  • I was born this way, what’s your excuse?
  • My mother puts me in the dryer every night.
  • Cigarettes stunted my growth.
  • I didn’t eat all my vegetables.
  • I was six-feet-two-inches when I went swimming and four feet when I came out of the water. [Note, the prankster had to retract this ‘short story’ told to a young boy before he was willing to take a bath.]

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On the more serious side, I often say, “God makes people in all shapes and sizes.” But I went way over the head of one young girl when I answered her with a question, “what color are your eyes?” After telling me they were blue, I asked “why aren’t they green? She shrugged. I anticipated this reply and said, “neither do I know why I didn’t grow.” Although this exchange did nothing to help her understanding, it did move me closer to incorporating genetics into my explanation of why I’m short.

Geneticists have identified almost 400 distinct types of dwarfism. And just as genetics determine eye color, two different genes determined that I would be a dwarf with Larsen’s syndrome—Filamin B and CHST3. Even so, knowing the specific genes for my dwarfism type doesn’t adequately explain why I got genes that resulted in my short stature. So let’s pivot to a more important question about the explosion of genetic information.

Is it legal to use genetic information against people whose genes identify a disability? November 21st—the 12th anniversary of the effective date of the Genetic Information Nondiscrimination Act (GINA)—makes this a timely question. The good news is that GINA was enacted to protect people from genetic information discrimination in (1) health coverage and employment as it relates to family history of a disease or disorder; (2) genetic tests of individuals, family members, or a fetus; or (3) any request for or receipt of genetic services, participation in genetic testing or genetic counseling by an individual or family member. 

Title I of GINA prohibits health insurers from using genetic information to determine if someone is eligible for insurance or to make coverage, underwriting or premium-setting decisions. However, GINA does not cover insurance policies for long-term care, life, or disability.

Title II of GINA prevents nonmilitary employers with 15 or more employees from using genetic information in employment decisions like hiring, firing, promotions, pay, and job assignments. GINA also protects employees or applicants by prohibiting employers from (1) requiring or requesting genetic information and/or genetic tests as a condition of employment; (2) intentionally requesting or obtaining genetic information; (3) harassment based on genetic information; or (4) retaliation for action taken against activities made unlawful by GINA. However, provided confidentiality of genetic information is maintained, an employer is allowed to obtain genetic information based on narrowly-drawn inquiries for medical information in connection with a reasonable accommodation request, or for voluntary participation in an employee wellness program.

 For more information on GINA, go to:

This post is based in part on examples found in book I of my dwarfism memoir trilogy: Dwarfs Don’t Live in Doll Houses, https://angelamuirvanetten.com/dwarfs-dont-live-in-doll-houses/.

Categories
Accessibility Disability Rights

MAKING PUBLIC COMMENTS: Time Wasted or Well Spent?

Self-Service Kiosk

Hope for people with dwarfism was rekindled on November 16, 1999. The federal Access Board published a Notice of Proposed Rulemaking (NPRM) to update the ADA Accessibility Guidelines (ADAAG). The embers ignited because the NPRM included a proposal to break the six-inch reach barrier in new or altered buildings and facilities by lowering the reach from 54 to 48 inches. If approved, ATMs, gas pumps, elevators—everything activated with a push, pull or turn—would become accessible to little people.

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But wait. Wouldn’t making comments on this issue be a waste of time? Only six years earlier, Robert and I were among the 700 Little People of America (LPA) members and allies who responded to the Access Board’s call for public comments on the exact same issue. And our hopes for equal access were dashed on July 15, 1993 when the banking industry persuaded the Access Board to allow operable parts on ATMs to remain out-of-reach at 54 inches.

Yet even though our letters did not result in a rule change in 1993, our time wasn’t wasted. Our letters attracted the attention of the ICC/ANSI A117.1 Committee on Accessible and Usable Buildings and Facilities. And, in 1994, LPA was invited to join this Committee that writes a building code standard which becomes law when adopted by a municipality or State. As a committee member, LPA successfully advocated to break the six-inch reach barrier in the 1998 edition of the ANSI A117.1 access code which subsequently influenced the Access Board to incorporate the 48-inch reach standard in ADAAG’s NPRM.

LPA members, other disability organizations, and myself as LPA’s delegate responded to the call for public comments on the NPRM updating ADAAG. Five years passed before we could answer the question, was it time well spent? But when the final rule was published on July 23, 2004, the answer was an unequivocal yes! Euphoria barely described the joy of finally seeing the 48-inch standard accepted in the 2004 ADAAG federal standard which applied uniformly across the nation.

But this is not a case of one and done. Almost 20 years later, people with dwarfism and disabilities have a long way to go before achieving equal access. Two words make this very clear—self-service kiosks. These inaccessible machines are popping up in retail stores, hotels, restaurants, health care facilities, all over the place. And because they’re not regulated by the ADA, system advocacy is once again a critical need. We need to do something.

The good news is that the federal Access Board recognizes the problem and has issued an Advanced Notice of Proposed Rulemaking to address it. The Board isn’t ready to propose a rule, but seeks input on what the rule should require. November 21, 2022 is the deadline for submitting public comments to docket@access-board.gov with a subject line reading, ATBCB—2022—0004.

So let’s use our time well again and make comments about what changes are needed to make self-service kiosks accessible to little people. Let’s build on our past success.

For further reference, go to see https://www.adatitleiii.com/wp-content/uploads/sites/25/2022/10/Kiosk-ANPRM.pdf.  

You may also like: “Making the Impossible Happen.” Angela Muir Van Etten blog. October 4, 2021. https://angelamuirvanetten.com/making-the-impossible-happen/ This post is based on events discussed in book II of my dwarfism memoir trilogy: ALWAYS AN ADVOCATE: Champions of Change for People with Dwarfism and Disabilities, https://angelamuirvanetten.com/always-an-advocate/.

Categories
Disability Rights International

Welcome Service Dogs; It’s the Law

Jody & Chief

Exclusion
Your dog can’t come in here.
You and your dog must leave immediately.

These are the words service dog owners frequently hear when seeking to enter hotels, restaurants, stores, and the like. And some dogs are excluded without words. This happens when drivers of buses and taxis refuse to stop after seeing a service dog with a passenger waiting for a ride.

So how frequently are service dogs excluded? The numbers are extraordinary. Access has been refused to three-quarters of American and British guide dog owners and half of Australian handlers and their dogs in the past two years.

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Exasperating civil rights violation

How can this be when the Americans with Disabilities Act (ADA), 33 State laws, and civil rights laws in other countries make it unlawful to withhold the welcome mat? Service dogs must be allowed to accompany their handlers into any facility, or portion thereof, open to the public. It’s the law!

Exception

Removal of a service dog is permitted if the dog is out of the handler’s control, behaving badly, poses a public health and safety risk, or is not housebroken.

Excuses don’t hold water

Businesses are either ignoring the law or ignorant of what the law requires. But neither excuse condones comments like the following:

I’m allergic to dogs.
I don’t want my car to get dirty.
I thought the dog was a pet since he wasn’t wearing a vest.
You don’t look disabled.

Besides, ignorance of the law is no excuse. For an employee to say, “I didn’t know,” at best, shows poor training or, at worst, a reckless disregard for the well-being of those whose safety and security is dependent on their service dog.

Examine

Staff challenging the legitimacy of a service dog can legally only ask the handler two questions: (1) is the dog a service animal required because of a disability? and (2) what task has the dog been trained to perform? Staff cannot demand that the dog be registered, certified, or identified with a harness, ID card, or vest. Training documentation and a demonstration of tasks the dog performs cannot be required. Questions about the handler’s disability are off limits.

Exercise your right to enter

When service dogs are denied entry, handlers can take one or more of the following steps:

1. Explain how the dog’s entry is legally mandated. Consider sharing a one page summary of the ADA, State, or other pertinent law.

2. Ask to speak to a manager or owner if lower tier staff still refuse entry.

3. Consider calling the police if the law provides for criminal penalties and ask for a police report.

4. If feasible, use your cell phone to record the refusal.

5. Document the refusal by making contemporaneous notes of the words spoken and actions taken against you and your dog.

6. File a complaint with the appropriate State or federal enforcement agency, see https://beta.ada.gov/file-a-complaint/

7. Get a lawyer to bring a private civil action against the offending business or entity.

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Disability Rights

Respect Service Dogs

Jody & Chief

Are you among the 79 million American pet dog owners with reason to celebrate National Dog Day on August 26th? If not, you can celebrate service dogs by showing them respect. They are trained to perform individualized tasks for people with disabilities.

Most of us are familiar with a guide dogs role of helping people with visual impairments independently and safely navigate everyday obstacles. But there are four other categories. A medical response dog assists individuals with a medical disability. For example, a diabetic alert dog detects high or low levels of blood sugar in people with diabetes and alerts their owners to dangerous changes in blood glucose levels. A seizure response dog helps during or after a seizure.

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Then there are psychiatric assistance dogs serving people with mental disabilities like anxiety, autism, depression, and schizophrenia or disorders like bipolar, obsessive-compulsive, and post-traumatic stress. With training customized to their owner’s need, the dogs can help by waking them up from a night terror, guiding them to a safe space during an anxiety episode, giving medication reminders, standing between their owner and other people in claustrophobic situations, or fetching help for an owner immobilized by fear.

A hearing dog assists people who are deaf or hard of hearing by alerting their owner to sounds like doorbells, smoke alarms, telephone rings, alarm clocks, or someone calling the owner’s name. A mobility service dog helps wheelchair users and those with poor balance with tasks like retrieving dropped items, opening and closing doors, turning lights on and off, or pulling a wheelchair up a slope.

In order for service dog assistance to be effective, the public needs to respect their work. The dogs should not be fed, touched, talked to, or approached without the owner’s consent. As one guide dog owner said, “Distracting the dog is a safety risk, not just an inconvenience.” For example, one owner fell and injured herself when a woman made a grab for her dog’s lead just as she was stepping off a train. 

Sadly 71% of guide dog owners in the United Kingdom reported such distractions occurring on a daily basis and 24% said this happens weekly. On the flip side, 30% of the public admitted to distracting a guide dog while it was working. This disrespect needs to stop.

Even though emotional support dogs and therapy dogs do not require training customized to their owner’s disability and do not qualify as service dogs, they are also worthy of respect. Emotional support dogs provide comfort and companionship to individuals living with emotional and other mental health disabilities.  Therapy dogs are commonly found in hospitals and nursing homes and their task is simple: to comfort people other than their owners. For example, veterans with post-traumatic stress disorder are often comforted when visited by a therapy dog. And unlike service animals, the work of a therapy dog often involves touching, petting, and playing.

For discussion of the rights of service dog owners to take their dog into public places, see next week’s post “Welcome Service Dogs.”

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Disability Rights

Ask the Author

what who how why

What books are in your dwarfism memoir trilogy?

  • Dwarfs Don’t Live in Doll Houses

Discover how my first 25 years paved the way to independence and determination.

  • PASS ME YOUR SHOES: A Couple with Dwarfism Navigates Life’s Detours with Love and Faith

Find hope and humor in this complicated international marriage story.

  • ALWAYS AN ADVOCATE: Champions of Change for People with Dwarfism and Disabilities

See how advocacy impacts volunteerism, entertainment, and equal access.

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Why did you write this series?

My frustration with media that misses the mark in describing our dwarfism experience often leading to inspiration porn. I write to stir understanding not pity, advocacy not apathy, and hope not despair.

Who will appreciate this trilogy?

Nobody skates through life without some kind of hardship—abuse, divorce, financial, grief, health—so whether the hardships are the same or different, everyone can relate to positive messages that emerge from painful experiences.  

Where can I get more information?

Visit my website at https://angelamuirvanetten.com/books to see the description, editorial reviews, product details, and author biography.

How can I get a copy of your books?

Buy links to Amazon.com, Barnes and Noble, and Books a Million are on my website at https://angelamuirvanetten.com/books/.

Where do I find media interviews about your books?

Go to the media page on my website, https://angelamuirvanetten.com/media/, for links to several podcasts and one written interview.

When do you do book signings and presentations?

Just email me at angela@angelamuirvanetten.com with a proposed time and place so we can schedule a virtual or in-person engagement. 

How do I get the book(s) I already bought autographed?

Email me your name and mailing address and I’ll send you a signed sticker to paste in your book.

What are you writing these days?

I’m no longer working on a book manuscript, but I do write a weekly blog post and the occasional article. See https://angelamuirvanetten.com/blog

Where can I follow you on social media?

What advice do you have for people who want to write a book?

Everyone has a story to tell, the question is whether you need 40 to 60 thousand words to tell it. Before launching into a book project, I recommend refining your writing with smaller pieces like articles and newsletters. Read other books similar to the one you want to write. Open yourself to reader feedback and professional editing. Once your book is written and edited, you’re only half way there. You still need a publisher. Decide whether to pursue traditional or independent publishing. Develop and implement a marketing plan. These steps can be even harder than writing because they are out of your control.

What questions do you have?

Write your question as a comment and I’ll answer in the reply.

For answers to more questions, read Ask the Author About ‘Always an Advocate.’ August 2, 2021. Angela Muir Van Etten blog post.https://angelamuirvanetten.com/ask-the-author-about-always-an-advocate/

Categories
Disability Rights Transportation

ADA and Taxi/Rideshare Services

WAV in Melbourne AU

People with disabilities should not be made to feel like second-class citizens or punished because of their disability. These are welcome words from Assistant Attorney General Kristen Clarke in a United States Department of Justice (DOJ) press release on July 18, 2022.

As we commemorate passage of the Americans with Disabilities Act (ADA) on National Disability Independence Day (July 26, 1990), it’s heartening that the DOJ—tasked with enforcing this disability civil rights law—remains committed to this directive. DOJ’s July 18th action holding Uber accountable for discriminating against people with disabilities makes their commitment clear.

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In November 2021, the DOJ filed an ADA lawsuit against Uber for charging passengers wait time fees. The fees, dating back to 2016, started two minutes after the Uber car arrived at the pickup location and were charged until the car began its trip. The DOJ complaint alleged that Uber violated the ADA by failing to reasonably modify its wait time fee policy for passengers who, because of disability, needed more than two minutes to get in an Uber car. For example, passengers who use a wheelchair or walker may need more time to fold or stow it in the vehicle.

The DOJ settled the case on July 18th when Uber agreed to pay several million dollars in compensation to more than 65,000 Uber riders who were charged discriminatory fees due to disability. Going forward, Uber will no longer charge wait time fees for all Uber riders who certify that their disability causes them to take longer to get in an Uber car. Uber will advertise the wait time fee waiver program and train its customer service representatives on the waiver program and refund process to ensure that people with disabilities are not charged illegal fees. 

This is great news for riders with disabilities who are able to board an Uber vehicle. But what about riders who need a wheelchair accessible vehicle (WAV) to use a ridesharing or taxi service? Their issue is not with wait time fees, but with waiting for Uber, Lyft, and taxis to provide a WAV service. These riders are denied the opportunity to book a trip.

After flying 2,500 miles from West Palm Beach, Florida to Spokane, Washington two weeks ago, the toughest leg of my trip was getting a ride eight miles from the airport to my hotel. Uber and Lyft had no WAVs and Orange taxi only had two. Despite being grateful that Orange cab honored my reservation when my flight was delayed, I cringed at the $100 surcharge. Since I had no other way to get to the hotel, I had to pay the equivalent of a triple fare for the “privilege” of riding in a WAV. Surely this is a violation of the surcharge prohibition found in the ADA Title III regulation at 28 CFR § 36.301(c).

As much as the ADA has accomplished, there is so much more to be done. So what is the next step for achieving accessible rideshare and taxi services?

For discussion of other advocacy issues, go to “ALWAYS AN ADVOCATE: Champions of Change for People with Dwarfism and Disabilities” available on Amazon in print, e-book, and audio formats. Read more at https://angelamuirvanetten.com/always-an-advocate/. To subscribe to my weekly blog on dwarfism and disability issues, go to https://angelamuirvanetten.com/blog/.

Categories
Disability Rights

Ten Steps To Effective Advocacy

Target
Image by Darwin Laganzon from Pixabay

1. Care Enough To Do Something

Our sense of injustice needs to be aroused to the boiling point where we say: “Something has to be done about this!” For example, Little People are tired of being unable to reach ATMs, gas pump dispensers, point-of-sale terminals, light switches, door handles, elevator buttons, and the like.

2. Commitment Is Personal

Yes, somebody should do something about this. But we can’t expect others to do something if we won’t do anything. No one cares or understands as much as we do.

Nothing will change until “the somebody” becomes “the someone” who cares enough to do something!

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3. Choose the Right Forum

When advocating against dwarf tossing as entertainment in licensed establishments, Little People of America (LPA) successfully lobbied two State legislatures to impose a ban. Local governments couldn’t stop it because the road show had left town before a meeting could be held. Congress was inappropriate because the atrocity was not a nationwide problem.

4. Competence

The ICC/ANSI A117.1 Committee on Accessible and Usable Buildings and Facilities was the best forum to make building code changes, but LPA’s success depended on competent use of the amendment process, Robert’s of Order, building code language, legislative format, the art of persuasion, and so much more.

5. Can’t Change the World Overnight

Change is incremental in building codes. The long-term goal of accessibility in public places can be set, but it must be broken down into manageable pieces. For example, from 1994 to 1998, LPA’s first bite into access barriers was to lower the unobstructed reach range from 54 to 48 inches. From 1998 to 2003, the second bite was to remove the obstructed reach in bathrooms.

6. Calculate the Cost

Advocacy can be time consuming and expensive. Be sure to carve out enough time and to allocate sufficient financial and human resources.

7. Connections and Coalitions

Build relationships to ensure communications with people on both sides of an issue. It is important to know the objections so we are prepared in advance with an answer.

Form a network with those who share the same goal. In the case of Little People, look for constituents (LPA individuals and groups), allies (other disability groups), and supporters (family, friends, and colleagues).

Don’t compete with other disability groups. For example, the interests of little people and wheelchair users differ in bathrooms. Work together for universal design and don’t pull in different directions.

8. Compromise & Creativity

LPA’s short-term agreement with elevator manufacturers allowed for a reach exception in high-rise elevators in 1998, and gave time to develop a technology solution for the 2003 revision cycle.

9. Communication keys:

  • Credibility.
  • Consistency.
  • Be concise in stating the problem and how it can be solved.
  • Counter opposing opinions.
  • Be clear and convincing to those whose minds need to be changed.
  • Don’t crumble under the pressure.

10. Churchill

Remember the advice of Winston Churchill: “Never give in; never, never, never, never.” And my personal practice? Perseverance, preparation and prayer!

These principles are drawn from lessons learned when advocating against dwarf tossing and for barrier removal in the built environment. To see these principles in action, read “ALWAYS AN ADVOCATE: Champions of Change for People with Dwarfism and Disabilities.” Buy your print, e-book, or audiobook today 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.