Categories
Disability Rights

Disability Voting Rights In Jeopardy

Disability Voting

The voting rights of close to 40 million people with disabilities are in jeopardy. The danger is posed by three passed and proposed laws that restrict rights rather than protect them. While refraining from making partisan political points, this post digs into how the following registration and mail-in ballot provisions threaten the right of people with disabilities to participate in democracy:

(1) Safeguard American Voter Eligibility Act or the SAVE America Act—H.R.7296 passed the House of Representatives on February 11, 2026; S. 1383 proposed in the United States Senate;

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(2) Florida SAVE Act, HB 991, signed April 1, 2026 and mostly effective on January 1, 2027; and

(3) Ensuring Citizenship Verification and Integrity in Federal Elections, Executive Order of the United States President, signed March 31, 2026.

Although the stated purpose of these election laws is to end illegal voting by noncitizens in federal elections, key provisions will also disenfranchise voters with disabilities. This is unacceptable and must be challenged!

Disabled people already face multiple voting barriers, such as inaccessible polling locations, lack of assistance, and voting machines that are difficult to use. So it should be no surprise that we consistently vote at lower rates than nondisabled people. In the words of disability activist, Andrew Pulrang, “Anything that makes voting a more complex and multi-step process makes it less likely that disabled people will vote.” If implemented, these new laws will further erode access for people with disabilities.

Registration Restrictions

The laws complicate the voter registration process by adding steps that make it harder to navigate for people who have vision loss, limited mobility, chronic health needs, limited transportation, or any other needs for assistance, to name a few. The primary culprit is the new documentation and verification rules that demand evidence of U.S. citizenship.

The United States and Florida SAVE laws both list the documents that can be used as proof of citizenship:

  • a U.S. birth certificate.
  • an official military ID and record of service showing a U.S. place of birth.
  • U.S. citizenship shown on certain driver licenses or identification cards or federal or state photo IDs.
  • a valid U.S. passport.
  • a naturalization certificate.
  • a consular report of birth abroad.
  • a federal court order granting citizenship.
  • an American Indian card issued by the Department of Homeland Security.

This array of options sounds very reasonable, until you realize that many people with disabilities don’t have easy access to their updated driver’s licenses, state ID cards, birth certificates, or passports. And the predicament is compounded by the SAVE America Act mandate that original documents must be shown in person at a voter registration site, thus eliminating voter registration via mail and disallowing a proxy to register on behalf of a voter. Furthermore, research from the Brennan Center for Justice indicates that almost four million people don’t have these documents at all due to loss, destruction, or theft. The Center for Democracy and Civic Engagement at the University of Maryland adds that 20 percent of people who identify as disabled don’t even have a license.

For some, the nail in the coffin will come with the requirement that official legal name-change documentation must also be presented if a person’s current legal name is different from the name on the citizenship document and does not match official government records. Frequent life events like marriage, divorce, and adoption typically involve a name-change and trigger the need for additional documents. This is especially difficult for people with disabilities who are hampered by unaffordable fees; difficulty printing, signing, or mailing documents; or reliance on others for help with transportation and filling forms. Many will have trouble tracking down multiple original documents in time to meet a state registration cut-off date.

Voting by Mail

Voting by mail is very popular as shown in the 2024 general election when nearly a third of all voters cast mail-in ballots. For many, this is way more than a mere convenience. According to the American Association of People with Disabilities (AAPD), voting by mail is the only way countless voters with disabilities can participate in elections. AAPD elaborates with the following examples:

  • A wheelchair user in a rural area may not be able to secure accessible transportation to the polls.
  • Crowded polling places may be unsafe and inaccessible to voters who are immunocompromised.
  • A voter with an intellectual disability may prefer to vote from home in order to spend more time reading and understanding the ballot.
  • People experiencing long-term hospital stays or living in nursing homes may be unable to leave their beds.”

Thankfully, the Florida SAVE Act does not mess with the mail-in ballot option. Not so the SAVE America Act and the President’s Executive Order.

The SAVE America Act requires voters seeking to vote by mail to submit documentary proof of U.S. citizenship in person to the appropriate election official. It also authorizes states to remove noncitizens from their official lists of eligible voters.

The Executive Order reflects the President’s belief that mail-in ballots are associated with fraud and his August 2025 announcement that he was going to lead a movement to get rid of them. Although the Order stops short of eliminating mail-in ballots, it changes how states will determine who is eligible to vote by mail. The Order calls for the compilation of three different citizenship lists which have been widely criticized for including inaccurate and outdated information. The U.S. Postal Service is then tasked with refusing delivery of ballots cast by anyone not on one of these lists.

The timing of directives in the Order has also been critiqued. According to the Bipartisan Policy Center, the following timeline issues are problematic:

  • The requirement that states submit lists of eligible mail-in voters to the USPS 60 days before an election conflicts with state and federal registration and mail ballot application deadlines.
  • It’s too late for most jurisdictions to comply with directions to change their mail-in ballot envelope design before mid-term elections.
  • The USPS rulemaking timeline is too short given its’ scope and insufficient time for election administrators to implement changes before upcoming elections.

Speak Up to Protect Disability Voting

  • Don’t count on the federal SAVE America Act staying stuck in the Senate by a filibuster. Contact your state Senator in Congress and lobby for amendments to S. 1383 that cure the impediments to disability voting.
  • The Florida SAVE Act is effective on January 1, 2027. Let’s use the next six months to lobby State representatives in Tallahassee and home districts to amend the law.
  • For both the SAVE America and Florida SAVE Acts seek amendments that remove the in person production of documents requirement and add reasonable accommodations or alternative methods for those disabled who need help gathering proof of citizenship or name-change documents.
  • Support the efforts of election experts and legal challengers who say the Executive Order is unconstitutional. Know that only the states and Congress have constitutional authority to change rules for federal elections.

Image by Dee from Pixabay

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NEW FEATURE

Resources that informed various blog posts will now be uploaded to https://angelamuirvanetten.com/resources/ and named for the blog post to which it relates.

Categories
Transportation

Shocking Seat Belt Violations

Seat Belt cameras

Recent travel in New Zealand and Australia presented me with plenty of disability blog material. As a frequent traveler to both destinations, I expected to encounter inaccessible public toilets and bathrooms and get grief from airlines about my mobility scooter. However, it never crossed my mind that seat belts would cause sufficient angst to become a blog post topic! Yet here I am reporting on a tale involving AU$1,674 in traffic fines and three demerit points for seat belt violations in two different Australian States—Queensland (AU$1,251) and New South Wales, NSW (AU$423). (In Florida, where I live, a fine for a safety belt violation is only $30.00.)

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As a driver for 55 years, I have willingly worn seat belts ever since they were first mandated in New Zealand in the 1970s. Buckling up has always been routine and nondebatable for both myself and my passengers. I accept data that seat belts reduce the risk of fatal injury by 45% and moderate serious injury by 50%. I understand this is due to the force on the seat belt being as much as 20 times our weight which is how hard we hit the windscreen, steering wheel, or dashboard in a crash if not buckled up. Even after the advent of air bags, I recognize that seat belts are still necessary to prevent passengers or drivers from being ejected during accidents and minimize injury from the force of an airbag’s impact.

So what happened? How does a compliant seat belt enthusiast rack up such exorbitant fines? We didn’t even get flashing lights or sirens pulling us over. In Queensland my sister was driving and in NSW my brother was driving. In both cases I was the passenger. To cap it off, we were only in Queensland for about six hours!

The shocking news arrived in the mail about two weeks after the alleged offenses. We had been caught by seat belt detection cameras installed at traffic lights. To put it politely, we were astonished because we were all wearing our seat belts. However, that wasn’t enough. The charge read “passenger seatbelt not properly adjusted/fastened.” We not only had to wear a seat belt, but it also had to be worn “properly.” In order to meet this standard the belts have to be worn across the strongest parts of the body—the lap belt across the hips and the shoulder belt across the chest. I was wearing the shoulder belt under my arm to stop it resting on my neck or face. And therein lay the dilemma. I could not wear the seat belt properly.

The relaxed and stress free part of my trip was interrupted by the need to write a letter to support my siblings request to review and cancel the fines and demerit points. My letter explained it this way:

“I have a musculoskeletal condition of a permanent nature, namely a rare form of dwarfism called Larsen’s Syndrome. Although I stand at 1.01 meters tall, my dimensions are disproportionate meaning I have longer limbs and a very short trunk. This means I cannot safely wear a shoulder seat belt. Although I can wear the lap portion of a seat belt across my hips, the sash falls across my face and neck instead of my chest and mid shoulder. As a result, the force of the impact is spread over a weaker part of my body instead of the stronger chest area. Instead of protecting me from injury, the “correct” way of wearing the seat belt puts me at higher risk of injury in a crash.”

I also asked for a special accommodation allowing me to use the shoulder seat belt under my arm. Even though Queensland and NSW both have a formal process to apply for a seat belt exemption, grounds for an exemption are very limited and extremely rare. For example, pacemakers, physical disability, pregnancy, and psychological conditions are not exempt. The application requires an appropriate medical certificate from a licensed Australian physician. Doctors are discouraged from providing letters stating that the use of a seatbelt is not required and encouraged to advise the patient to have the seatbelt modified.

Since my travel budget did not include fines of this magnitude, and my siblings did not want demerit points on their licenses, we bolstered our review request by seeking an exemption. My sister worked on the Queensland Seatbelt Exemption Certificate (Form F2690) with her doctor who was willing to sign the form because he had met me a few times when my father was in his care. We hope that submitting the Exemption Application will be enough to tip Queensland’s review request scales in our favor. We chose not to submit this form with our NSW review request. Aside from this being an out-of-state form with questionable weight, we did not want to put NSW on notice that we had a prior violation for the same offense.

So what’s the moral of the story? Be sure to buckle up properly no matter what country or State you travel in. And follow the requirements for obtaining an exemption if you need it. In researching for this post, I learned that even in Florida I need to get my doctor to certify that I have a medical condition that causes my seat belt use to be inappropriate or dangerous. Then carry a copy of the certification while driving or as a passenger.

Meanwhile we wait and pray for news that both Australian fines and demerit points have been cancelled.

Image description: The back side of a street sign and three traffic light sets hang below the horizontal arm on a pole; a vertical pole stands on top with a cylindrical shape traffic surveillance camera; all four attachments are backdropped by white clouds and blue sky.

Image by StockSnap from Pixabay

For more writings by Angela Muir Van Etten, go to:

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Resources that informed this post include the following:

Categories
Transportation

Mobility Scooter Refused Boarding

scooter at airport

After flying across America and the Pacific with my mobility scooter without incident in February 2026, I was shocked two weeks later when Qantas refused to board the scooter on my flight from Christchurch, New Zealand (NZ) to Sydney, Australia! In effect they were also refusing to board me because traveling without the scooter was not an option.

The refusal was preceded by a series of irrelevant questions about the scooter battery. The question that made no sense was how many hours are left on the battery? When I said I had no idea and asked why this was pertinent, the junior staff agent appeared with a screwdriver with the intention of opening the battery to find out.

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Clearly she had no idea what she was doing so I blocked this maneuver. She was unimpressed with my answering a question she didn’t know to ask: is the battery dry cell or lithium? And my reference to traveling with this gel (dry) cell battery and scooter numerous times on many different airlines in the United States, Australia and N.Z. were unpersuasive.

My appeal to senior staff did not improve the situation. Although I arranged for a Pride mobility scooter company representative to call the Qantas check-in agents to provide battery details and confirm the scooters flight safety, boarding was still denied. But instead of citing a battery problem, the airline changed its’ story. Now staff said there was no room on the plane because there was only one tie down available and this was in use by another scooter! So why all the song and dance about the scooter battery if there was no room on the plane?

I was offered alternative flights that involved a stopover and the addition of several hours to the trip, a 3:00 AM check in for an early flight the next day, or switching to another airline with a late evening arrival. None of these options were acceptable given my need for sleep, a shorter trip, and reducing the risk of luggage and the scooter missing a connecting flight. Besides, the offer of the alternative flight was withdrawn upon learning that it was fully booked.

After spending at least 1 ½ hours at the check-in counter, removing the scooter seat to allow access to the battery, and requesting a chair to sit on while waiting for a decision, I had no choice but to accept a flight at the same time the next day. Thankfully, my friends were willing for me to return home with them for another night and there was time to notify family organized to meet me at the Sydney airport that I was arriving a day late.

This whole debacle was a case of history repeating itself. Ten years earlier, I flew with Qantas from Sydney to Auckland to Sydney. However, that time was more complicated as our travel party included eight family members and two mobility scooters. When attempting to gate check the scooters, we were redirected to a waiting area where more knowledgeable staff would meet us and handle the scooters. However, when staff eventually showed up, we repeatedly answered questions about the scooters weight, batteries, and advised how baggage handlers typically manage the scooters. We even explained that Qantas had no problem transporting the scooters on our trip from Dallas, Texas to Sydney a couple of weeks earlier.

Another hour passed before staff advised that the plane was too small to handle two scooters and that one scooter would have to come on a later flight. This made no sense because we were traveling on the same size plane as our flight from Auckland to Sydney when both scooters were transported on the same plane as ourselves. After rejecting the option of having one scooter travel separately, we also declined the offer to travel on the same plane as the scooters on another airline later in the afternoon. We had no desire to be separated from our family members and retorted, ”If we wanted to fly with [named airline] we would have booked with that airline.” We also expressed amazement that Qantas was communicating their inability to handle the scooters!

The outcome was the only deviation from repeating history. A decade earlier, all scooter travel barriers were suddenly lifted when an Operations Manager got involved. The size of the plane, the weight of the scooters, or the safety of the batteries were no longer cited as an issue. In my post flight complaint, I wrote, “In an age when we have many airline choices, what can you say to persuade me that Qantas is still a viable airline choice for a person traveling with scooters?”

Despite Qantas commitment to providing the best customer service in the airline industry, the Qantas Customer Care division limited it’s reply to a staff training issue. But here we are ten years later and Qantas is still asserting it can only transport one mobility scooter on a smaller plane like the Boeing 737-800 with seating capacity of 174 passengers. So unless Qantas makes some changes, it appears that I do need to choose another airline. For one thing, the airline needs to understand that people who use a mobility scooter cannot be separated from their device and don’t want to be parted from a traveling companion who also uses a mobility scooter.

My closing advice is to follow airline instructions, such as that provided by Qantas:

Finally, be sure to let the airline know in advance the specifications of your mobility aid so that you don’t get booked on a plane that cannot accommodate your device. Rest assured, I will observe these guidelines on future flights.

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Categories
Accessibility

“Accessible” Public Bathrooms: Hits and Misses

Accessibility main pic

With travel to New Zealand and Australia on my agenda in February 2026, I suspected I would gather lots of material for a blog post on access. And I was right. Indeed on day two of my trip I got trapped in a hotel public bathroom. I had no trouble pushing the door open upon entry, but was unable to reach the pull handle on the other side of the door when ready to exit. I waited expectantly for someone to open the door when entering. No-one did. I tapped on the door with my rings hoping someone would hear and come to the rescue. No-one did. I did not have international calling on my phone to ring the front desk so I resorted to using WhatsApp to text my friend who was on her way to pick me up. The pleasure of seeing her after a two-and-a-half-year gap between visits was enhanced when she pushed the bathroom door open!

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This experience was just the beginning. In the next few weeks, I encountered numerous out-of-reach public bathroom features—door locks, toilet flushers, toilet paper, faucets, soap, and paper towels. Rarely could I see into the bathroom mirror. Living 70 years without such essentials, prepared me for some of this exposure—I carried my own tissue paper and sanitizing soap, accepted air drying as an alternative to blow drying or hand towels, and risked using the toilet with an unlocked door.

It amazes me that more than 35 years after publishing the first book in my dwarfism trilogy—Dwarfs Don’t Live in Doll House—I’m still writing about access issues as shown in the following excerpt from Chapter 5, At Your Physical Pleasure:

“I remember too well the time I locked the toilet door in the airplane taking me to Malaysia. That time I took the risk and locked the door anyway. There seemed to be more at stake. Unless the door was locked, the light would not come on and I would have to leave the door wide open. I did not fancy exposing myself to the strangers waiting in line outside the door.

When ready to leave, all my energy failed to release the lock. I was trapped. After several attempts, I sat back on the toilet, lid down, exhausted. The thought of spending the rest of the flight in there did not thrill me at all. A person can only spend so much time sampling the lotions and potions. I should have been grateful that they were in reach.

My eyes settle on the emergency button. It was so attractive that I pressed it, twice. Nobody came. I felt relief and panic simultaneously. Relief, because I didn’t really want to be rescued from the toilet and be associated with the usual child victim; and panic, because I had pressed the emergency button twice and nobody responded. There was truly no escape.

The panic subsided as my strength returned. It didn’t take as long as Samson’s hair to grow, but I suspect that in the single moment when I needed extra energy to stretch up to the lock, I was given divine help. I reached up and again the door sprung open. I was relieved to get out of there in more ways than one. . .

When ready to wash my hands [in another location], I discover the taps (faucets) are out of reach. They’re not too high, just set too far back in the hand basin. My mother’s well-worn advice to always wash my hands after using the bathroom must be put to rest this time. The words don’t die easily. Of course, reaching the tap was only the first of three steps necessary to accomplish the joy of clean hands. After the tap comes the soap and then the hand towels. In this bathroom, I can’t reach any of them.

It’s even more frustrating to come across a bathroom where you can reach some of the amenities but not the others. To be offered the sensation of water running over your hands and be denied the cleansing effect of soap is infuriating. To have the water pour from the tap and extend to a flow from the wrist to the armpit as you reach in vain for the hand towel is drenching. To have the air dryer not only diminish the quantity of water on your hands, but also destroy the style of your hair is enough to make you blow your cool.”

At the time of writing Dwarfs Don’t Live in Doll Houses there were no laws mandating access. But the public bathroom photos taken in New Zealand and Australia, and shown in the table below, depict both current and early examples of various bathroom barriers that occurred long after laws mandating accessibility were in place.

toilet paper
2011 ——————————————————————————- 2026

Let’s install the toilet paper above her head so as not to mess with the tiles. (picture left) No tile preservation excuse for elevated toilet paper (picture right)

toilet flush
2016 ——————————————————————————- 2026

Toilet flush on top of tank! (picture left) Toilet flush even higher on the wall (picture right)

Sink
2026 — Soap dispensers both inaccessible and accessible
Paper towel
2009 ———————— Insane paper towel placement ———————- 2026
Door lock t
2026 — Door locks both inaccessible and accessible
Door lock b
2026 — Door locks both inaccessible and accessible

It’s apparent to me that lack of access can be attributed to flouting building access codes, lack of common sense, lax building inspection practices, and failure to consider or care about the needs of people with disabilities. It’s especially aggravating given how much technology has provided access solutions. See, for example, the three photos of accessible locks.

So what needs to happen to make for accessible bathroom experiences? How much longer do people with disabilities need to endure access inequality? And why do we continue to tolerate inaccessible bathrooms? The law mandates access, so let’s use it to achieve our equality.

For additional Angela Muir Van Etten accessibility blog posts, go to:

You may also want to read books in Angela’s dwarfism trilogy, https://angelamuirvanetten.com/books/:

  • Dwarfs Don’t Live in Doll Houses
  • Pass Me Your Shoes: A Couple with Dwarfism Navigates Life’s Detours with Love and Faith; and
  • Always An Advocate: Champions of Change for People with Dwarfism and Disabilities.
Categories
Character

Protect Born-Alive Abortion Survivors

newborn

June 24, 2022 was an historic day of celebration for pro-life supporters. It’s the day the Supreme Court of the United States (SCOTUS) decided that the U.S. Constitution does not confer a right to abortion and overruled Roe v. Wade, the decision which promoted this “right” into law in 1973! However, in rewriting abortion law in Dobbs v. Jackson Women’s Health Organization, SCOTUS did not ban abortions. Rather the court effectively ruled thatregulating abortion was a matter for individual state governments.

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As a result, pro-life advocates anticipated a decline in abortion rates given existing or new state laws restricting abortion. These laws range from total bans with no exceptions; bans with exceptions for the life of the mother, rape, incest, or the baby’s medical condition; restricting abortions after a specified number of weeks; to absolutely no restrictions allowing abortions up until the moment of birth. However, contrary to expectations, abortions have increased since the Dobb’s decision. For example, the Society for Family Planning’s #WeCount project estimated a national total of roughly 1.14 million abortions in 2024, the largest number of abortions in the U.S. in recent years.

Consequently pro-life advocacy to save unborn babies is as active as ever. One significant battleground circles around what happens to the survivor babies who are born alive after a bungled abortion. Should survivors be cast aside to die or should they be treated as any other patient?

According to Susan B. Anthony Pro-life America, polling indicates that 77% of voters support legislation to ensure that a baby who survives an unsuccessful abortion be given the same medical treatment as any other baby born prematurely at the same age. So the question arises as to why six sessions of the United States Congress—dating back to 2015—have failed to pass the Born-Alive Abortion Survivors Protection Act? This bill, pending in the 119th Congress, requires the same degree of care as would reasonably be provided to any other child born alive at the same gestational age and is compatible with the polling results of three-quarters of voting Americans. The bill also penalizes health-care practitioners with up to five years imprisonment, requires health care practitioners and hospital employees to report violations to law enforcement authorities, and gives the mother of the abortion survivor a civil cause of action against the abortionist and protection from prosecution.

In applauding the passage of the Born-Alive Abortion Survivors Protection Act in the House of Representatives on January 23, 2025, Congresswoman Wagner of Missouri declared:

“Innocent children deserve the opportunity to live and thrive – period. It’s up to us to be the voice for these babies who are at their most vulnerable and ensure they get the love and care they need,” . . .

Majority Leader Steve Scalise of Louisiana also commended the bill’s passage in the House:

“This isn’t a partisan issue, but a moral one. With this legislation, House Republicans are standing up for our most vulnerable Americans and defending the sanctity of life.”

Senator James Lankford of Oklahoma, introduced the Senate version of the bill with these words:

“No child should be denied medical care simply because they are ‘unwanted.’ Today, if an abortion procedure fails and a child is born alive, doctors can just ignore the crying baby on the table and watch them slowly die of neglect.”

Senate Majority Leader, John Thune of South Dakota, a strong proponent of the infinite dignity and value of those born and unborn, is committed to continuing his fight in Congress to defend those who cannot speak for themselves. True to his pro-life pledge he also spoke in support of the bill:

“We should all be able to agree that a baby born alive after an attempted abortion must be protected, and yet I fully expect that later today my Democrat colleagues will vote no on this legislation,”

As Thune anticipated, the Senate bill met with opposition in the form of a filibuster from senators blocking passage of the bill. The vote of 60 or more Senators needed to override this procedural obstruction remains elusive. Until this happens the bill is dead in the water.

          Opponents of the Born-Alive Abortion Survivors Protection Act give two primary reasons why Senators are so determined to block its passage. Here are reasons and rebuttal for each argument:

  1. REASON: The bill is redundant because the Born-Alive Infants Protection Act of 2002 already protects babies born-alive after an abortion.

REBUTTAL: The 2002 law has no requirements that abortion survivors be provided with appropriate care or transferred to a hospital, and there is no enforcement or reporting mechanism if the law is violated. As a result, many health-care practitioners act with impunity when they fail to provide any care to abortion survivors and leave them to die.

2. REASON: Born-alive babies are a rare occurrence.

    REBUTTAL: Declaring the incidence of born-alive survivor babies as rare is disingenuous and appears irrefutable because there are no federal reporting requirements and only a handful of states require reporting. However, there are several sources that report significant numbers of live birth abortions in the U.S.:

    • 284 between 1997 and 2024 recorded by states with mandatory reporting.
    • 143 between 2003 and 2014 recorded by the Centers for Disease Control and Prevention. Note: this count does not include babies who survived attempted abortions and are still alive.
    • 66 between 2013 and 2024 recorded by the Florida Agency for Health Care Administration (a mandatory reporting state).
    • 700 identified by the Abortion Survivors Network.

    Supporters of the bill recognize that mandatory reporting is critical. Dr. Willard Cates, a former head of the CDC Abortion Surveillance Unit, makes this clear with his observation: “live births after an abortion are often hidden by abortionists because admitting to them is ‘like turning yourself in to the IRS for an audit.” Furthermore, Congressman Mike Lee of Utah reminded us that we must recognize the humanity of these precious children and make every effort to save their lives, . . .”

    It’s definitely easier to pretend that this atrocity is not happening in America. But ignoring the problem will not make it go away. Please call your Senator and demand legal protection and medical care for these defenseless abortion survivors. Every baby born alive deserves medical care and legal protections. Please call now to implore Senators break the filibuster and allow the Born-Alive Abortion Survivors Protection Act to receive the favorable votes waiting to be cast.

    For more Angela Muir Van Etten life-affirming blog posts go to:

    Resources that informed this post primarily include the following:

    Categories
    Character

    Pregnancy Centers Under Fire

    Pro Life

    Preface

    After a series of posts on death, the timing is perfect for me to begin the new year with a post on pro-life issues. Perfect because January 18 is Sanctity of Human Life Sunday and January 23 is the National March for Life. Both events focus on the priceless value of every human life regardless of disability, heritage, or gender. Because the volume of material available is too much to cover in one post, this is the beginning of a pro-life series.

    # # # # #

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    Pregnancy Centers Under Fire

    Pregnancy centers across America are devoted to protecting the lives of pre-natal and peri-natal babies. The magnitude of their impact in 2024 is shown in a report with data collected from 2,775 pregnancy centers across all 50 states: Pregnancy Centers: Rising to the Occasion with Unwavering Care. Note the following highlights of this data:

    • More than one million new clients were served.
    • Over $452 million in medical care, support and education programs, and material goods was provided, including pregnancy tests, ultrasounds, parenting education, baby supplies and clothes.
    • Needy families received tangible, material support valued at over $116 million.
    • 8 in 10 centers provided free or low-cost medical services, staffed by over 10,000 medical professionals.
    • 29% of centers provided the service of Abortion Pill Reversal (APR)—a protocol designed to counteract the effects of an abortion induced via oral medication.
    • 77% of centers provided post-abortion support.

    So with such amazing generosity pouring into communities across the country one could hope centers would be recognized with Community Service Awards. Instead, centers are being targeted for pro abundant life activities based on their biblical beliefs. Opponents who favor abortion seek to put them out of business! If not for Christian nonprofit legal defense ministries like Alliance Defending Freedom (ADF) and American Center for Law and Justice (ACLJ), the strikes might have succeeded. The following is a sampling of cases in which ADF and ACLJ involvement was key to putting out fires.

    First Choice Women’s Resource Centers v. Platkin

    First Choice gives women the information and resources they need to make life-affirming decisions for themselves and their unborn children in five New Jersey locations. In November 2023, NJ Attorney General Platkin issued a subpoena to First Choice demanding that it turn over ten years’ worth of documents including its statements on APR, information given to clients and donors, personnel papers, copies of every agency solicitation and advertisement, and information about outside organizations that First Choice works with. All this without any complaint or evidence that First Choice had violated New Jersey law.

    ADF attorneys challenged the unlawful subpoena on First Choice’s behalf in December 2023. Among other constitutional grounds, ADF argued that (1) it is constitutionally protected speech for First Choice to advance its pro-life mission; and (2) AG Platkin practiced viewpoint discrimination when he targeted only pro-life groups and none that advocate for abortion.

    After two years of litigation, oral argument on the case was heard at the Supreme Court of the United States on December 2, 2025. A decision is not expected until June 2026, but observers are cautiously optimistic that the decision will favor First Choice.

    National Institute of Family and Life Advocates (NIFLA) v. James

    New York Attorney General Letitia James brought suit against 11 pro-life organizations, alleging fraud for promoting APR. Apparently AG James rejected the December 5, 2023 Charlotte Lozier Institute survey findings that 29 of 36 woman who contacted an APR hotline within 72 hours of taking the first abortion pill—mifepristone—successfully reversed its effects by taking a high dose of progesterone.

    The NY AG James fraud case against multiple pro-life organizations, prompted NIFLA to hire ADF to file a preemptive lawsuit. On December 1, 2025, a three-judge panel of the United States Court of Appeals for the Second Circuit unanimously upheld a lower court ruling siding with NIFLA and two pro-life pregnancy centers, Gianna’s House and Options Care Center. The panel ruled that efforts to stop pro-life pregnancy centers in New York from informing patients about APR are unconstitutional. 

    Your Options Medical Centers v. Healey, et al

    On August 19, 2024, the ACLJ filed a complaint against Massachusetts officials and their allies on behalf of Your Options Medical (YOM), a pregnancy resource center (PRC) and medical clinic which has been licensed by the Massachusetts Department of Public Health since 1999. The suit alleges that MA state officials engaged in overt viewpoint-based discrimination against YOM’s pro-life religious views, including harassment, suppression, selective law enforcement, disproportionate investigations, threats, and accusations of carrying out false and misleading advertising, and other falsehoods.

    Despite YOM, being fully compliant with state licensure requirements and having no patient complaints, MA launched a million-dollar anti-pregnancy resource center campaign via billboards, social media, and a dedicated government website, falsely portraying PRCs as dangerous facilities that mislead women and put their health at risk. In contrast, at least eight complaints filed against abortion clinics for serious safety violations—such as failure to use sterile surgical equipment and storing biohazardous material in staff break rooms—did not trigger a negative public campaign against them.

    Oral argument on the motions to dismiss by Massachusetts officials will be heard on January 29, 2026 in federal court in Massachusetts.

    National Institute of Family and Life Advocates v. Treto

    When the State of Illinois passed a law that forced pregnancy centers to promote abortion and its supposed “benefits”—contrary to their deeply held beliefs about protecting unborn life—the ADF challenged the law on behalf of three pro-life pregnancy centers. It was a relief on April 4, 2025 when the U.S. District Court for the Northern District of Illinois ruled that the law was unconstitutional, compelled speech. As ADF Senior Counsel Kevin Theriot said, “No one should be forced to express a message that violates their convictions. The government can’t compel medical professionals to choose between violating the law and violating the Hippocratic Oath to do no harm.”

    However, it was distressing when the court also ruled that pregnancy centers speech and conscience rights are not violated by a provision mandating that they provide women who ask for abortions with a list of providers. Hence the case continues in the 7th Circuit Court of Appeals where ADF will argue that “the Referral Requirement” is constitutionally protected speech.

    Obria Group and Obria Medical Groups PNW v Ferguson

    In May 2022, Washington Attorney General, Bob Ferguson, issued civil investigative demands (CIDs) for two pregnancy centers—Obria Group and Obria Medical Groups Pacific Northwest—to answer questions and produce documents. Without any reference to complaints from patients or evidence of wrongdoing, AG Ferguson premised the investigation on “possible” violations of Washington’s Consumer Protection Act as a cover for his disagreement with Obria’s pro-life viewpoint, APR advertising, and advocacy for life-affirming solutions.

    The massive amount of documentation ordered included sensitive information about contractors, volunteers, and tax preparers; complete agendas and minutes of every board of director’s meeting; donor correspondence; employee compensation and retirement policies; records of payments and in-kind transfers from affiliates; and tax forms dating back 15 years.

    Even though Obria provided over 1,500 pages of documents in response to the CIDs, AG Ferguson and his office demanded more documentation and information. With ADF representation, Obria filed a lawsuit in the U.S. District Court for the Western District of Washington, Tacoma Division alleging, in part, that the AG’s investigative demands were unreasonably burdensome in violation of their constitutionally protected rights and should stop. Six months later, AG Ferguson officially closed his investigation of Obria and stated he would not file litigation.

                For discussion of more pro-life issues, follow this series for discussion of federal and state legislation, and defunding Planned Parenthood. 

    For more Angela Muir Van Etten life-affirming blog posts go to:

    Resources that informed this post primarily include the following:

    Categories
    Until Death Do Us Part

    Healing With GriefShare

    robertbirdangela
    Image descriptions: LEFT: A night view of Robert wearing glasses, a blue denim vest and broad smile with an Australian Cockatoo sitting on his shoulder. MIDDLE: Australian Lorikeet climbs scooter tiller and gets traction with his beak. RIGHT: Angela wearing a blue T-shirt and pink cardigan remembers Robert’s love of birds as she aims her phone camera at an Australian Lorikeet sitting on her scooter steering wheel.

    My life changed forever the day I met Robert. Our love for one another motivated me to change—my country, my church, my job—everything. Likewise everything changed the day Robert died. But this time the change was out of my control and it was the end of our marriage not a beautiful beginning. Bridal bliss was replaced with a widow’s sorrow. There would be no more of his adventures, caring, encouragement, hugs, laughter, love, smiles, or stories—no more anything with him.

    Although it seemed like my world stopped, I was caught up in a flurry of activity with family and friends involving cremation, a celebration of life service, and the first round of distributing, donating and tossing Robert’s worldly goods. Despite the sadness, family helped nourish my body at favorite restaurants and my spirits at a butterfly park and art museum.

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    And as expected, after a few weeks everyone returned to their own routines. I was okay with this. Because Robert had been in residential rehabilitation or hospital care for several months before he died, I was used to living alone. So I went about my days taking care of what was in front of me—paying bills, medical appointments, online groceries, teaching Sunday School, et al. However, I felt flat, frittered away a lot of time watching TV, and lacked the creativity and concentration needed for anything extra. Clearly the mere passage of time was not enough for me to fully recover from losing Robert.

    I needed a healthy way to mourn my loss. GriefShare—a 13-week support group that has helped more than one million people find comfort as they move through the grief process—is how I’m paving my path forward. Through a Bible-based work book, videos, and group discussions I’m learning six important processes to work through in order to heal the pain. As I approach the one year anniversary of Robert’s death, it’s a good time to pause and reflect on six signs of healing—accepting, adjusting, dealing with emotions, continuing, sharing comfort, and addressing questions. (GriefShare®, p ix, fourth edition, April 2024.)

    Accepting that I won’t see Robert again on this earth is a given; rather I’m acknowledging that every aspect of my life is changing. I can’t go on as though nothing has happened. And numbing the pain with escape behaviors keeps me stuck in grief. Instead, adjusting to being a widow calls me to embrace a different role in society. So I’m reassessing how God wants me to use my gifts, talents, and skills and staying open to any changes God wants me to make.

    The first focus was my blog begun five years earlier as a tool for marketing my dwarfism memoir trilogy. I asked God whether to discontinue or remodel the blog. After a five month pause, the answer was apparent. Restart the blog and reduce the frequency to once a month.

    My biggest challenge to adjusting has been with household maintenance issues. I was bombarded with opportunities to adjust when the pool pump got so loud it disturbed the neighbors, brown patches appeared in the lawn after the sprinkler clock quit, the air conditioner failed to keep the house temperature comfortable, water cascaded off the roof when the gutters clogged, a leaking pipe on the solar panel dripped onto the patio, and termites were discovered in the attic. Dealing with contractors had been Robert’s department. Now it was my job to get bids from reputable businesses, understand the equipment, and negotiate the scope of the work and fair prices. I hated the process, but trusted God to lead me to competent and reliable workers.

    Relationships also required adjusting. Despite the high value I place on being independent, the large volume of maintenance issues caused me to rely on help from family, friends, and neighbors. Breaking two fingers and being in a hand splint for six weeks saw many of these same helpers provide meals and drive me to appointments, church, and other events. The bonus was that our bonds grew stronger as we spent more time together. My relationship with Robert’s brother Mickey and his daughter Veronica (his caregiver) also strengthened when I visited him regularly to provide stimulation and encouragement and give Veronica much needed breaks and emotional support.

    Sadness is the primary emotion I deal with in my healing process. Rather than being angry and bitter that Robert’s gone, I thank God for our 43 years of marriage and for ending his suffering. I alleviate my sadness with music and memories. Remembering him with photos, in conversations, and on special days helps fill the void. On his birthday, I celebrated with family at the same place Robert ate with us last year. On our wedding anniversary, I ate a slice of cheesecake remembering how much he enjoyed this treat last year while in a rehabilitation facility. Naturally I also remember him on ordinary days!

    In continuing life without Robert I take steps forward in a way that honors his memory. For example, I provided biographical material to Robert’s professional organization—the Rehabilitation Engineering Society of North America (RESNA)—in support of his posthumous Fellow Award; gave Robert’s close friends and family a photo magnet of him enjoying six of God’s creatures; and continued our Christmas tradition of shopping in charity gift catalogues as an alternative to buying presents for each other.

    I don’t try to replicate the way things were, but I have continued our practice of hospitality. Two of these events Robert used to enjoy—our Little People of America chapter Thanksgiving party and family reunions. He was not here for this year’s baby shower or welcome dinner with our new Pastor’s family and church friends.

    “Comforting others is essential to your healing.” (GriefShare®, p ix, fourth edition, April 2024.) I found my comfort in God, “our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.” (2 Corinthians 1:3-4, New Living Translation.) Because I was very aware of how important it is to have family at your side in the aftermath of a loved one’s death, I comforted a grieving mother by contributing to the travel expenses of her siblings who lived thousands of miles away.

    “A key step toward healing involves coming to terms with what you believe about God, heaven, and eternity.” (GriefShare®, p 101, fourth edition, April 2024.) This was an easy one for me. My views on such matters were settled long before Robert’s death. We both believe that Jesus is our Lord and Savior, Robert is alive in Christ, and we’ll be reunited when I die or Jesus returns, whichever comes first. The day is coming when “[God] will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever.” (Revelation 21:4, New Living Translation)

    Meanwhile, I’m trusting God’s plan and goodness. Based on His faithfulness to me in the past, I’m confident He will keep His promises in the future. I can be sure of this, “God is with [me] always even to the end of the age.” (Matthew 28:20)

    For further information on GriefShare, go to: https://www.griefshare.org  

    For more Angela Muir Van Etten blog posts in the series Until Death Us Do Part, go to:

    For Angela and Robert Van Etten’s love story, read “Pass Me Your Shoes: A Couple with Dwarfism Navigate Life’s Detours with Love and Faith” by Angela Muir Van Etten. https://www.amazon.com/Pass-Me-Your-Shoes-Navigates/dp/0998464864/ref=sr_1_1?dchild=1&keywords=pass%20me%20your%20shoes&qid=1600969039&s=books&sr=1-1&fbclid=IwAR2SO81IzPfczzW2MPyCHKRHvoQTQDulyzwywq2G_fgpIMyaQCV1zkIQFJo

    For Scripture supporting my belief that Robert is alive in Christ and that we will be reunited when I die, go to: Luke 24; John 14:1-3; Romans 1:16-17, 3:23-25, 5:8-10, 6:4-11, 23, 8:1-4, 11, 31-34, 10:9-10, 13; 1 Corinthians 15:22, 35-58; Philippians 3:20-21; and 1 Thessalonians 4:14.

    Categories
    Until Death Do Us Part

    More Valuable Than Sparrows

    Sparrow main
    Image by junfangsjs from Pixabay. Description: the pavement is covered with a large flock of sparrows either sitting or taking flight.

    What is the price of five sparrows—two copper coins?
    Yet God does not forget a single one of them.
    And the very hairs on your head are all numbered.
    So don’t be afraid;
    you are more valuable to God than a whole flock of sparrows.
    Luke 12:6-7 (New Living Translation)

    On October 9, 2024, I was visiting Robert at the Cleveland Clinic, Martin North Hospital. At 3 PM the hospital went into emergency lock down mode. Windows were shuttered. The parking lot emptied. Staff made their way into the building with sleeping bags and personal care items. All because Hurricane Milton sped towards Florida as a Category 5 storm. I left the hospital trusting Robert into God’s care.

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    secondgroup
    Image descriptions: LEFT – a female carrying an arm load of bedding topped with red slippers walking towards a three story hospital building with shuttered windows, adjacent palm trees, well-manicured shrubs and a large flowering plant in the foreground; RIGHT – a lowered ramp on our wheelchair accessible van faces a row of empty accessible parking spaces with a background perimeter of palm trees and two parked ambulances.

    Although Milton slowed to a Category 3 hurricane, wind and rain ravaged the west coast of Florida and a record number of tornadoes wreaked havoc as it crossed the State at hurricane speed. When driving to emergency shelter with a cousin, our cell phones pinged repeatedly with warning of tornadoes in the vicinity. The next morning we praised God for keeping us safe and sparing our homes and the hospital from the deadly destruction of multiple tornadoes in the area.

    Despite being critically ill, Robert was discharged from the hospital two days later. He was admitted to Solaris HealthCare Parkway, a subacute rehabilitation and skilled nursing facility. I knew Medicare would cover the cost of rehabilitation for up to 100 days, but was blissfully ignorant that Robert only had 14 days to demonstrate progress. When he failed to meet Medicare’s rehabilitation benchmark within two weeks, the administration began talking to me about discharging him from rehabilitation services.

    Because Robert was in no condition to come home, his only option was to transfer to long-term skilled nursing care at Solaris—a private-pay service billed at $9,500 per month! Whoa. It felt like another emergency was about to hit. Not only did my mind boggle over the $9,500, but also on making this payment every single month. Sure we had sufficient savings to cover a short-term stay. But long term? And would there be any money left to cover long-term care for me should the need arise in the future? It was time to create a personal emergency plan—one that didn’t involve lockdowns, shutters, or shelters.

    As a couple, we did not meet Medicaid’s financial criteria, so I consulted with an Elder Law Attorney. However, her recommendation that I apply for Medicaid’s Institutional Long-Term Care Program did not sit well with me. I had already rejected the suggestion of his cousin that I qualify Robert for Medicaid by divorcing him, but the lawyer’s advice was almost as disturbing. She said Robert would qualify as an individual if I removed his name from joint bank accounts and chose not to pay his nursing home bills. Although this spousal refusal option was a recognized choice used by many applicants it didn’t feel right to me.

    Thankfully God’s master plan was far better. It also confirmed how He cared for His children way more than the sparrows. However, it took several weeks to understand how God would do this. Here’s how it played out.

    Robert’s nine-week stay at Solaris was punctuated with two hospital admissions. Both coincided with discharges from rehabilitation services. So whenever he returned to Solaris, the calendar reset for another 21 days of rehabilitation covered by Medicare. Because this happened twice, Robert’s final discharge from rehabilitation services happened one day before he left Solaris for the last time. As a result, instead of my private-pay bill being in the tens of thousands, I only paid a total of $317! God took challenging circumstances and worked them for our good.

    “And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose.”
    Romans 8:28, New American Standard Bible

    Surprisingly, not meeting Medicaid eligibility also created an issue for Robert’s transportation from Solaris to the dialysis center. The first time I arrived at Solaris to pick him up, a nurse objected to my transporting Robert in Hugo, our wheelchair accessible van. She followed us out to the van and watched the boarding process. After I securely tied down Robert’s scooter, she told the aide standing next to her that this would be the last time for me to take him in the van. So I looked at her and said, “So how is he going to get there?” She referenced transportation services. Without hesitation, I retorted:

    “And who is going to pay for it? Solaris won’t pay, Medicare won’t pay, the dialysis center won’t pay, Robert doesn’t qualify for Medicaid or State-funded transportation disadvantaged rides, and private-pay accessible transportation would cost around $1,200 a month.”

    After announcing that we had purchased Hugo two years earlier to transport Robert where he needs to go, I pulled in the ramp, closed the door, and drove Robert to dialysis. The only response I got from Solaris after that was from an Occupational Therapist who added a seatbelt to the scooter.

    Because each hospital stay lasted about a week, there was a question mark as to whether there would still be a bed available at Solaris when Robert was ready to return. But God was faithful in answering our prayers. In October, caring staff welcomed him back to the same room he had vacated the week before. Although his November return involved a room change with less space and different staff, he now had a window view of the garden in a cheerful well-lit room. The bonus was that his post COVID-19 status meant he had the room to himself for ten days! This was a big deal because there was a very long waiting list for single occupancy rooms.

    After Robert discontinued dialysis on December 11, 2024, it was important to me that he spend his final days in a peaceful setting with compassionate and skilled care from nursing staff attentive to his end-of-life needs. Hospice House was where this could happen. God knew that timing was of the essence and moved with record speed—December 12th was the intake, December 13th he was transported to Harper House, and at 10:45 PM on December 14th he died peacefully in Hospice care. God clearly showed how valuable Robert was to Him!

    For more Angela Muir Van Etten blog posts in the series, Until Death Us Do Part, go to:

    For a musical bonus, listen to Chris Rupp. “His Eye is on the Sparrow.” A Cappella, Official Video. https://www.youtube.com/watch?v=PTiIHLfuzxc

    For Hurricane Milton details, see:

    Categories
    Until Death Do Us Part

    Physical Therapy Journey

    Robert scotter

    Image description: Robert—a male dwarf wearing jeans, T-shirt, hospital socks and arm band—sits in his scooter with crutches in the holder behind him as he rings the bell with sparkling eyes signaling the end of inpatient therapy.

    We had been married 15 years when Robert received physical therapy (PT) after his bilateral hip replacement surgeries. I was impressed with how hard he worked and his therapist hit the nail on the head when she declared he must be a workaholic! I expected the same level of commitment 24 years later when he needed PT again.

    Although Robert’s prosthetic hips held up very well, his legs weakened and pain in his ankles and knees made walking difficult, falling frequent, and getting in and out of the car near impossible. So when Robert had his doctor write a PT referral, I was fully on board with helping him achieve his therapy goals. I even sat in on sessions to understand what was expected of him.

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    Robert therapist

    Image description: Robert’s therapist stands—hands on hips—directing leg strengthening exercises in the pool; his walker is in the foreground and crutches lie on the patio next to the pool railing.

    His physical therapist was determined to transition Robert from crutches to a walker to save his shoulders and arms from permanent nerve damage and stop him crashing to the ground when his crutches slid out from under him. However, after 60 plus years using crutches, Robert’s resistance was resolute! He only used the walker when the therapist was present and only did his homework exercises when he succumbed to spousal pressure. Consequently, it was no surprise when Robert was dismissed from PT services due to lack of progress.

    When a nerve conduction test in Robert’s legs showed chronically irritated nerves in his lower back, we knew PT would help him. But given his low motivation for doing exercises between visits and disdain for the walker, I didn’t support Robert’s return to PT. Eventually Robert took matters into his own hands and restarted at-home PT while I was visiting family in Australia! Despite his assurances that this time would be different, I was skeptical.

    “We can make our plans, but the Lord determines our steps.”
    Proverbs 16:9 (New Living Translation)

    After only a couple of months, Robert’s PT services were interrupted by a week-long hospitalization for high blood pressure, infections, pneumonia, and Chronic Kidney Disease. Although he did manage to get in a few walks—using his crutches—with hospital PTs.

    Robert walking

    Image description: Robert walking with a hospital PT wheeling an oxygen tank and discreetly closing the backside of his hospital gown.

    When Robert was being discharged from the hospital, a referral to an acute rehabilitation facility for intensive PT was suggested. He chose to continue PT at home with Natasha, the therapist with whom he had developed an excellent working relationship. She was very good at distinguishing between excuses for cutting therapy sessions short and his actual need for a break. His complaints that it hurts fell on deaf ears and she was unimpressed by Robert’s resistance to using the walker. Instead of caving when he said with plaintive eyes and a winning smile, “You should see what I can do with crutches,” she burst out laughing.

    Robert walker

    Image description: Robert using his custom walker at home with PT Natasha

    But five months later, unwelcome differences in Robert’s therapy transpired when he was admitted to the hospital for ten days, diagnosed with End-Stage Kidney Disease (ESKD), and prescribed dialysis three times a week. This was a major setback. Robert was now so weak he couldn’t independently pull up to a sitting position or support his trunk, and two or three people were needed to transfer him in and out of bed. Walking goals were remote.

    Robert PT Aide

    Image description: Robert with physical therapist and aide helping him into bed.

    I wondered whether Robert was even a candidate for the intensive three hours therapy per day at Encompass, an acute rehabilitation hospital. But the Medical Director—who was also Robert’s personal physician—made an exception for him saying, “after all he is exceptional.”

    But God was still directing our steps, just as he did when we first met. In his second week at Encompass, I kept our tradition of giving him a Saint Patrick’s Day card:

    “Forty-three years ago today my life changed forever
    when I met you at the New Zealand Embassy.
    So much has happened since then,
    for better and worse,
    but God has been with us through it all.
    Now as we enter the next phase in our health journey,
    I look forward with hope and love for you and our Heavenly Father
    who guides our steps and gives us strength for every situation.”

    Robert participated in the intensive therapy regimen to the best of his ability with therapists who were both caring and committed to his progress. He rarely complained and displayed good humor when I picked up an orange “thing” on his bedsheet to see what it was. When I told him it was salmon he quipped, “was it swimming?” Not so funny was the day his bed was stripped down to the mattress looking for his lost hearing aid. The search ended when a therapist walked in and spotted the aid in his ear!

    In his three weeks at Encompass, Robert advanced from being barely able to sit up and feed himself to sitting up, eating independently, and transferring with one helper to and from the bed to his scooter. He discharged to PT at home where for six months he continued to work on building his strength. Sadly, he was never able to walk independently with either the crutches or the walker. He switched to using his scooter both indoors and out.

    To my surprise, Robert never lost his powers of observation. One day he told me, “you have beautiful green eyes.” I was happy to know he still noticed and admired this feature. However, I was stunned another day when he blurted, “your teeth are falling out.” He correctly observed wider gaps between my teeth, but wrongly concluded that I was missing some teeth. I excused his lack of tact to his cognitive decline. And it wasn’t long before I missed his observations whether positive or negative.

    Sepsis—secondary to a urinary tract infection—spreading through Robert’s body changed everything. After being hospitalized for another week, he lost so much strength he now needed two people to transfer him to his scooter and lots of pillows to prop him up while seated. Although Encompass accepted Robert back for more intensive therapy, physical therapists reported slow progress impeded by sleepiness and inability to follow PT instructions.

    The only positive thing about being an Encompass alumnae was that he was warmly received by staff who remembered his willing participation six months earlier. It also helped that his brother Mickey was a patient at the same time. Although Mickey visited Robert every day, there was little conversation—Robert had become a man of few words and Mickey’s speech was impaired by a third stroke.

    Robert reclining

    Image description: Robert reclining in the bed watches his brother seated next to him in his wheelchair.

    This time Robert’s discharge from Encompass did not involve any talk of him coming home. He was transferred to Solaris for subacute rehabilitation services with only one hour therapy per day. There was little opportunity for progress given the limited time available for PT and two more hospitalizations for respiratory issues related to his ESKD and COVID. Inevitably Robert’s critically ill status led to his discharge from all rehabilitation services and ended his physical therapy journey.

    My flesh and my heart may fail,
    But God is the strength of my heart and my portion forever    .
    Psalm 73:26 (New American Standard Bible)

    For more blog posts by Angela Muir Van Etten, go to:

    For further discussion on Robert’s physical therapy experiences, you may also want to read Chapter 15, For Shorter or Taller, Closer or Farther in the second book in Angela’s memoir trilogy—“PASS ME YOUR SHOES: A Couple with Dwarfism Navigates Life’s Detours with Love and Faith,” https://angelamuirvanetten.com/pass-me-your-shoes/.

    Categories
    Until Death Do Us Part

    Caregiving with Help

    Caregiving main

    For I hold you by your right hand—
    I, the Lord your God.
    And I say to you,
    ‘Don’t be afraid. I am here to help you.
    Isaiah 41:13
    (New Living Translation)

    Knowing God had a good grip on me was calming when planning Robert’s discharges from hospitalizations to home care with End-Stage Renal Disease (ESRD). Fear and worry were corralled, because I counted on God to help me keep Robert out of long-term institutional care for as long as possible. This post is the story of how God orchestrated people to help me care for him at home with Medicare and private-pay home health services and a groundswell of support from family, friends, and neighbors.

    Nurses, therapists, and aides were deployed from a Medicare-certified home health agency.

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    Private-pay caregivers helped with bathing, dressing, laundry, meals, and transfers in and out of bed. Although I canceled caregivers hired from an agency after only a few days due to standard shifts being a minimum of six-hours and Robert’s personal care only taking about two hours. My attempt to assign light housekeeping tasks for the remaining four hours went awry despite being within the scope of work. One caregiver acted like she was doing me a favor when she reluctantly agreed to run the vacuum cleaner while Robert was at dialysis. She expected to be paid for reading and talking on her cell phone. That was the last day she worked for us—I called the agency to cancel future services.

    Although the agency did have an option for two-hour shifts, it came with a price penalty. For every hour less than six, the hourly rate increased. In an attempt to locate self-employed caregivers who lived nearby, I posted in our homeowner association’s private Facebook group. The hope was that caregivers who lived in the neighborhood would accept two-hour shifts because travel time was not an issue. Not only did this bring a couple of leads, but it also brought some volunteer help from neighbors. One of them was a recently retired registered nurse who helped me decide to call for an ambulance when Robert was too weak to sit up straight on his scooter for the trip to dialysis. A recommendation from Robert’s physical therapy assistant led us to a private pay aide that I hired for four hours on Sunday mornings while I went to church.

    In the Galatians 6:2 spirit of sharing each other’s burdens, Christian friends and family pitched in to help from time-to-time with dishes, gardening, meals, replacing light bulbs and smoke detector batteries, hurricane shutters, salt in the water softener, and other miscellaneous chores. Visitors also helped with tasks relating to Robert’s care, such as assembling a mobility scooter, haircuts, installing a lower toilet and bidet toilet seat, removing furniture to allow for scooter access next to the bed, and replacing a wheelchair tire.

    Visitors were also key to providing Robert with socialization, emotional, and spiritual support. Many brought gifts, like flowers and plants; or treats, like Easter eggs and homemade shortbread. Some played games with Robert, like Qwirkle and Uno; others reminisced on past adventures and stories retold at almost every meeting. Robert always agreed for people to pray with him.

    Visiting hours were liberal ranging from an hour to a few days. Overnight guests included a church friend from Rochester, New York raising funds to serve as a missionary in Spain; a first-time visit from my High School girlfriend in New Zealand along with her daughter and granddaughter; and cousins from Indiana, Jacksonville, and Las Vegas. All of them brightened our days and took care of their own needs. My girlfriend even managed to get Robert into the pool!

    Caregiving r3

    There was no limit as to how many visitors could come at one time. Van Etten Woods continued as the popular venue for reunions of about 30 family members and the 20 or so attending the annual holiday party of our local chapter of Little People of America (LPA). In both cases, the meal was a potluck and helpers came early and stayed late for set up and clean up.

    Caregiving r4

    And there was no restriction to two-legged creatures—four-legged animals were especially welcomed by Robert. He enjoyed afternoon visits with dogs—Kit and Frodo, and three days and nights with Puffin, the cat who sheltered with us and his owner while their home was tented for termites.

    Caregiving r5

    Robert’s niece and two cousins—Brittany, Linda, and Susan—took helping to the next level when they each had charge of one week of his care. Their love and kindness made it possible for me to travel to Sydney, Australia for three weeks to celebrate my 70th birthday with my family. Although this preceded Robert’s diagnosis with ESRD and need for hands on personal care a few months later, his impaired cognition and reduced mobility required protective care and guidance. He was in no shape to join me on the trip, but was agreeable to my going without him.

    The magnitude of their caregiving assignment no doubt sank in when they received my detailed email instructions relating to getting in and out of the gated community, garage and house; the garbage schedule; medication management; food and hydration needs and preferences; his Medic Alert button; showering; tips on getting him up from a fall; handling his laundry; house temperature preferences; and supervision in the pool. This still didn’t cover everything. There were followup questions about the garden, lawn, hurricane preparation, and pool and water softener services. My contribution was to simplify their days by not scheduling any appointments for three weeks.

    Thank goodness for FaceTime. Our daily calls between Stuart and Sydney took care of unforeseen issues, like the air conditioner malfunctioning. Naturally Robert missed me while I was gone, but he had a blast with all three carers who kept him comfortable and content. Amazingly, a year later Brittany and Susan served as substitute caregivers again when I went to Baltimore, Maryland for two nights and three days.

    When I was invited to be the keynote speaker at the annual LPA banquet in Baltimore, I couldn’t imagine accepting the engagement. Robert’s care needs had increased substantially given his ESRD diagnosis which, among other things, required outpatient dialysis three times a week. However, Robert and his family caregivers encouraged me to go. So after prayerful consideration, I went and delivered the most important speech of my life—“Be an Advocate for Positive Change.” I was honored for the opportunity, humbled by those who made it possible, and hopeful that LPA members would believe that change is possible, recognize that everyone has what it takes to be an advocate, care enough to do something, and commit to going out to change the world.

    And so what happens when the caregiver is incapacitated? We had three occasions to learn the answer—eye surgery, severe shoulder inflammation, and a vertigo attack:

    • My brother and sister both came from Sydney for ten days to care for both Robert and me when I had Vitrectomy surgery for a hole in the macular and a detached retina.
    Caregiving r6
    • A friend came with holistic remedies, a heating pad, and groceries when I was debilitated for a week with right shoulder inflammation and pain.
    • A cousin came with groceries, made Robert’s dinner, and helped him into bed when I had a vertigo attack.

    As you can see, God was here to help me in every circumstance through the willing hands of so many dedicated helpers! And for that I am forever grateful.

    For details on events only mentioned in this post, you may also want to read other writings by Angela Muir Van Etten: