Categories
Awareness

Share the Love of Books

Book

February 14th is for sharing the love of books and reading and, of course, for sharing love with your valentine. It’s hard to miss Valentine’s Day, but how did I miss International Book Giving Day? It’s been active since 2012 and is celebrated in 44 countries, including the United States. Whatever the reason for missing it in the past, now I know to use it to increase access to and enthusiasm for books.

As a child, my siblings and I didn’t go to bed with square eyes from watching too much television, rather we went to bed with a book to read. Little did we know how much this contributed to our language development, critical thinking ability, social cues, emotional intelligence, and imagination. When Amy Broadmoore, the United Kingdom co-founder of Book Giving Day, noticed how many children didn’t have books to read, she made it a goal to get as many new, used, and borrowed books into the hands of children as possible.

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So how do people celebrate Book Giving Day? Here’s a list of ideas:

  1. Gift a Book: Select a new or gently used book that you love or think someone else would enjoy. Give it to a friend, family member, coworker, or child in your community. To gift books on dwarfism, check out my website for ideas:

2. Donate Books: Local libraries, schools, shelters, foster homes, orphanages, thrift stores, or community centers are typically ready to accept book donations. You can also donate to non-profit organizations that focus on sharing books with people without access to them, such as: Books for Africa, Book Aid International, the Book Bus, the Prison Book Program, and Kids Need to Read.

3. Organize a Book Drive: Gather books from your community and organize a book drive. Encourage others to contribute, and then distribute the collected books to those in need.

4. Leave a book somewhere: You may “accidentally” leave a book in a doctor’s office waiting room, on public transit, and other places for someone else to pick up and read. You can inscribe the book on the first page to show whoever picks up the book it’s theirs to read and pass on to the next person.

5. Organize or join a book exchange program (for children or adults): It’s not only about handing out books; you can also trade them. See for example, Bookmooch which allows people to receive used books in exchange for donating their own books.

As for me, I commit to gifting one of the books in my dwarfism memoir trilogy (winners choice as to which one) to the first person who emails me this week at angela@angelamuirvanetten.com to report celebrating Book Gifting Day in one of the five ways listed above. 

Photo credit: Image by GraphicMama-team. https://pixabay.com/vectors/book-character-glasses-show-1773756/

You may also want to read blog posts about books by Angela Muir Van Etten:

Categories
Motivation

Get Up and Never Give Up

board

February is an exciting month for football fans, but figure skating is more my style. I often wonder at how skaters get right up after they fall and continue skating. Apparently it’s one of the first lessons skaters learn. Indeed, Scott Hamilton—American figure skater and 1984 Olympic champion—counted 41,600 skating falls.

Building on this experience, in 2017, the U.S. Figure Skating founded National Get Up Day on February 1 as a day to share inspiring stories of perseverance and the power of never giving up. So today I’m sharing a snippet of the story of what it took for Little People of America (LPA) to break the six-inch reach barrier for ATMs.

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In 1993, Nancy Mayeux—a parent of children with dwarfism—led 700 LPA members in a letter-writing campaign to the federal Access Board in response to their call for public comments on the height of ATMs. In a devastating blow, the Board declined the requests to lower the operable parts on ATMs from 54 to 48 inches.

One year later, unwilling to give up, LPA applied for membership on the ICC/ANSI A117.1 Committee on Accessible and Usable Buildings and Facilities, a private organization that produces a model building code making public buildings and facilities (including ATMs) accessible to people with disabilities. LPA’s application was approved and I was persuaded to represent LPA on the Committee.

In March 1995, the Committee rejected LPA’s proposed changes targeting the six-inch reach barrier as unsupported by statistical data. Despite this setback, LPA gathered data on height, arm extension, eye height, and vertical reach at the July 1995 national conference. And the data showed that at 48 inches about 80% of people with dwarfism could reach ATMs and everything else activated with a push, pull, or turn.

When the data was presented to the Committee in February 1996, it resulted in the biggest code change in 20 years! LPA’s 48-inch proposal was added to the second draft of proposed code revisions. However, the proposal still needed to survive public comments and negative ballots on the final draft of the ANSI Access Code in the next three meetings: October 1996, April/May 1997, and October 1997.

At the Spring 1997 meeting, there was pressure on Committee delegates to withdraw their early votes supporting 48 inches. After a five-hour battle and the longest debate on a single provision in the whole three-year revision cycle, the room was quiet as the votes were carefully counted: 13 in favor of 54 inches, 18 for 48 inches, and seven abstentions. But the fight was not finished.

In October 1997, a surprise fifth and final debate on LPA’s proposal was scheduled. Once again I had to justify the reasons for lowering the unobstructed side reach from 54 to 48 inches. But when the final vote was taken, the victory was more decisive—22 votes for 48 inches, eight votes for 54 inches and only two abstentions.

As a result of LPA’s “get up” actions we learned that change is possible with preparation, perseverance, persuasion, and prayer.

Photo credit: Image by Gerd Altmann from Pixabay

This post is a condensed version of Chapter 15, Breaking the Six-Inch Reach Barrier, in “ALWAYS AN ADVOCATE: Champions of Change for People with Dwarfism and Disabilities” by Angela Muir Van Etten. https://angelamuirvanetten.com/always-an-advocate/.

Categories
Accessibility

Are We There Yet?

Subway
stairs down to New York City subway

The impatient query of children traveling in the back seat of a car—Are We There Yet?—can just as easily be applied to Americans with Disabilities Act (ADA) compliance. Thirty-two years after the January 26, 1992 ADA effective date, the answer is “no, we are not there yet.” Violations abound.

1. Sidewalks and Curb Ramps

The lack of a good sidewalk network still deprives wheelchair users with mobility impairments from using public transportation due to access barriers between home and transit stops and from transit stops to their destination. In recent years, multiple locations across America provide a fraction of the curb ramps required by federal law—Atlanta (30%); Baltimore (1.3%); Oregon (9%); and Boston (less than 50%). Los Angeles estimated it would cost $1.4 billion and take 30 years to comply.

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2. Trains

Train systems built before the ADA are not wheelchair accessible and, according to the Federal Transit Administration, about 20% of transit stations nationwide still do not have elevators or ramps. For example, only about 25% of New York City subway trains are served by elevators and these are frequently broken. And despite an historic settlement with the Metropolitan Transit Authority on April 24, 2023, it will take until 2055 for at least 95% of train stations to be made accessible with elevators and ramps.

3. Taxis

A family of three people with disabilities traveling with two power scooters, a bunch of stools and suitcases tell how hard it was to get a taxi from a public transportation terminal to a hotel. Upon placing calls to cab companies that advertised service to disabled people, the first two companies denied service and hung up on them. A third company declined saying they don’t pick up from the airport and only transport people to and from doctor appointments. It took “sweet talk” and a private pay fare of $75 to convince the company to accept the ride. Sadly, this experience is more the rule than the exception not only for this family, but for many others with disabilities.

4. Hotels

After reserving an accessible hotel room, there’s no guarantee it will still be available when the disabled guest arrives at the hotel or if the room will even be accessible. In 2022, the United States Department of Justice resolved two such cases:

  • In U.S. v. Hilton Worldwide, Inc. (HWI)—after ten year of litigation—a Consent Decree ordered HWI to institute a reservations policy for accessible guest rooms that will hold open two non-premium accessible guest rooms as the last rooms sold at each hotel.
  • In U.S. v. Badrivishal LLC (owner and operator of the Holiday Inn Express Hotel & Suites in Columbus, Ohio), the hotel must ensure that its rooms, including bathrooms, that are required and advertised as accessible to people who use wheelchairs are, in fact, accessible.

5. And so much more
What can you add to the list of ADA violations that need to be addressed?

Photo Credit: Image by Foundry Co from Pixabay

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Categories
Character

The High Cost of Protecting Life

sanctity of human life

One thing we can all agree on is that we live in an intensely polarized society. Our various views on “life” being one of the most divisive issues. On one hand, people see life as an invaluable gift from God that is worthy of protection despite beginning at an inopportune time or being imperiled by disability or poverty. On the other hand, people see life as a choice to be made by women in control of their own bodies without regard for God’s hand in creating life and making humans in His image.

Sadly the discourse on “life” issues often demonizes those with opposing viewpoints. Rather than lose friends or create enemies, we sometimes retreat from expressing our opinion. But we need to boldly share our perspective while respecting those with a different belief.

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I was praying for such courage when in the midst of a highly emotional discussion on abortion at the 2022 Little People of America (LPA) national conference. In a post Roe v. Wade world, the group was intent on getting LPA to advocate for abortion rights for women with a pregnancy where it was known the baby had a terminal genetic condition and would only live a short-time after birth. Although the group did not agree with my pro-life position, at least they listened.

Organizations with a pro-life mission, such as crisis pregnancy centers (CPCs), are a special target of abortion advocates. They are often attacked for providing care and resources to women facing difficult or unexpected pregnancies. For example, Planned Parenthood has described CPCs as “fake clinics” with a shady, harmful agenda based on lies, misinformation and propaganda about abortion. But this is a distortion of CPCs mission and practice. In 2022, a survey of pregnancy centers disclosed free services to women, men, and children, including: pregnancy tests, ultrasounds, parenting education programs, prenatal care, linkages to vital community and public health resources, and baby diapers, wipes, formula, clothes, and more. CPC refusal to offer or refer women for abortions does not make the clinics fake.

In 2015, the State of California passed the Reproductive “FACT” Act which forced life-affirming pregnancy centers to display information, including a phone number, on how women can obtain a free or low-cost abortion. With help from the Alliance Defense Fund, the National Institute of Family and Life Advocates (NIFLA) sued California Attorney General Kamala Harris in federal district court, alleging that the Reproductive FACT Act violated its First Amendment rights to free speech and free exercise. In 2018, the Supreme Court of the United States (SCOTUS) agreed with NIFLA’s allegations. In NIFLA v. Becerra, SCOTUS found that the California law was an unconstitutional content-based regulation requiring NIFLA to advertise abortion—the very practice they were devoted to opposing.

After SCOTUS’ June 2022 decision in Dobbs v. Jackson Women’s Health Organization found that the U.S. Constitution doesn’t contain a right to abortion, CPCs have been subjected to violence and vandalism requiring 24-hour security, anti-graffiti paint on buildings, reinforced doors, and bulletproof walls. Please pray for the protection of “life” advocates.

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Categories
Accessibility

MEDICAL DIAGNOSTIC EQUIPMENT: Proposed for State and Local Government Entities

Radiology imaging
Female dwarf of 40 inches standing next to an examination table lowered to an accessible height of 16 inches.

Excitement was my response to the January 12 news that the United States Department of Justice (DOJ) has taken a major step towards revising its title II Americans with Disabilities Act (ADA) regulations governing State and Local Government Entities (28 CFR part 35) to add Medical Diagnostic Equipment (“MDE”)—examination tables, examination chairs (including chairs used for eye examinations or procedures, and dental examinations or procedures), weight scales, mammography equipment, x-ray machines, and other radiological equipment commonly used for diagnostic purposes by health professionals. The purpose is to ensure that MDE used by 6,905 public entities offer individuals with disabilities accessible services, programs, and activities at hospitals and other health care facilities.

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Little People know all too well that without accessible MDE, individuals with disabilities are often denied an equal opportunity to receive medical care, including routine examinations. According to the DOJ, patients with disabilities have had to forgo Pap smears because they could not safely transfer from their wheelchairs to a fixed-height exam table. Similarly, inaccessible mammography machines have contributed to low breast cancer screening rates for patients with disabilities. But no example was given about the health consequences for people with dwarfism.

In a Section-by-Section Analysis of the proposed rule, the DOJ details the changes to the title II ADA regulations, including the reasoning behind the proposals, and poses questions for public comment. Powerful and easy to follow public comments should also reference the section or DOJ issue on which comments are based. Recommended changes should include data, information, or supporting authority. Please follow the link dated January 12 under Additional Resources at the end of this post to get details of proposed changes.

Now is a great time for people with dwarfism and Little People of America (LPA) to get on the DOJ’s radar, especially since they have called for public comment on this proposed rule change. Although many of the changes and issues directly impact public entities, it’s important to be on the lookout for changes that will adversely impact patients, especially little people.

The following are a few areas I have tagged for my comments:

  •     § 35.210 Requirements for Medical Diagnostic Equipment
  •     Several Issues on scoping
  •     Issues 6 to 8 on dispersion of accessible MDE
  •     Medical Equipment Used for Treatment, not Diagnostic, Purposes

You get the idea. Please read through the rule and pick areas on which you want to share your observations, approval, concerns, or whatever else comes to mind.

Somewhat surprising, is the DOJ only allowing 30 days for the submission of comments. This means we only have until February 12, 2024 to submit comments. Even though this tight turn around might limit how much you can say, please say enough to put the DOJ on notice to LPA issues.

Interested persons are invited to submit comments, identified by RIN 1190–AA78 in the subject field, by any one of the following methods:

• Federal eRulemaking website:https://www.regulations.gov. Follow the website’s instructions for submitting comments.

• Overnight, courier, or hand delivery: Disability Rights Section, Civil Rights Division, U.S. Department of Justice, 150 M St. NE, 9th Floor, Washington, DC 20002.

Please help to spread the word. The more public comments received the better.

Additional Resources:

Categories
Medical

GLAUCOMA: the “Silent Thief of Sight”

eye diagnostic equipment
Female dwarf accesses eye diagnostic machine using reams of paper

Knowing that glaucoma is a leading cause of blindness for three million Americans doesn’t make much of an impact if you think you don’t have it. But think again. You could have it and don’t know it. Glaucoma—the “Silent Thief of Sight”—has no symptoms in early stages. As a result, only 30 to 50 percent of cases are diagnosed.

The only way to know if you have glaucoma is to get a comprehensive dilated eye exam with visual field testing. People at higher risk should be tested every one to two years. This includes people (1) age 60 and over, especially Hispanics and Latinos, Asians, or

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African Americans age 40 and over; and (2) those with a family history of glaucoma, elevated intraocular pressure, diabetes or high blood pressure (hypertension), myopia (nearsighted) or hyperopia (farsighted), eye injuries, or steroid use.

Despite having severe myopia and wearing glasses or contacts since my 20s, no eye doctor ever told me about being at risk for glaucoma. My great grandmother did go blind in her late 70s, but no diagnosis was made or shared with us grandchildren. As to family history, I do have an aunt with severe myopia being treated for glaucoma.

The first time glaucoma was mentioned to me was after my November 2021 vitrectomy surgery for a hole in the macula and retinal tear in my left eye. Notwithstanding surgical repairs, the optic nerve was irreparably damaged leaving me completely blind in that eye. In numerous post-operative visits, the surgeon repeatedly referenced my glaucoma as a possible explanation for the vision loss. Every time he did this, I told him I didn’t have a glaucoma diagnosis. After checking his notes, he agreed and apologized. However, I suspected he backed off because as a retina specialist it was outside his specialty to diagnose glaucoma. Yet I knew it was within his skill set to see telltale glaucoma indicators.

Consequently, I was highly motivated to do everything in my power to preserve vision in my one and only sighted eye. In addition to reliance on the Great Physician, I consulted with a glaucoma specialist for a diagnosis. At a specialty eye clinic, I had another immersive experience with inaccessible diagnostic equipment: Tonometry to measure eye pressure; Visual Field (Perimetry) to check peripheral vision; Fundus camera to observe the retina, optic disc, blood vessels, macula and fovea, and posterior pole; sonogram eye scan; Pachymetry to measure cornea thickness; and Gonioscopy to measure the drainage angle in my eye.

The conclusion? I am a glaucoma suspect! Even though a glaucoma diagnosis is uncertain, good follow-up care is the key to determining changes or “progression” over time. My vision, eye pressure, fluid drainage, and optic nerves will be checked at regular intervals. Meanwhile, I use topical eye drops to lower eye pressure. I will not be silent prey to this disease.

How about you? The Glaucoma Awareness month in January is a great time to check your vision status.

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Categories
Open

Unparalleled Year of Us

Two Muffins
Image credit: Two Chocolate Chip Muffins from “Dinner with Julie.” https://www.dinnerwithjulie.com/wp-content/uploads/2013/03/Chocolate-chip-muffins-1-e1521489560475.jpg

UNIVERSAL themes of love for family and friends brought us together in Florida, United States (U.S.) and Sydney, Australia.

  • The wedding of Brittany and Stephen was a joyous assembly of family from around the U.S.
  • My 70th birthday trip to Sydney inspired a three-day, three generation reunion with my siblings, nieces and nephews followed by visits from my matron of honor 42 years earlier and girlfriend since kindergarten. Robert was not well enough to travel with me, so he stayed home in the care of three family members.

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  • Another three generation get together occurred in Stuart when my New Zealand (NZ) girlfriend of almost 60 years visited for the first time with her daughter and granddaughter.
  • More friend connections were made at Robert’s high school reunion and when hosting our annual Little People of America (LPA) Thanksgiving/Christmas gathering.

UNDERTAKING writing projects continued with uploading weekly blog posts; contributing a chapter to an anthology called “Dwarfism Arts and Advocacy: Creating Our Own Positive Identity;” and an LPA regional workshop on breaking down dwarfism stereotypes.

Several UNEXPECTED deaths of people from LPA, church, and family hit hard. The most shocking was the sudden loss of Ray Gedge. Ray dates back to high school days and became family when he married my aunt about 48 years ago. He also served as Robert’s groomsman in our NZ wedding in 1981. His passing is a solemn reminder that we have entered the last lap of our lives on this planet.

URGENT visits to emergency rooms involved both Robert and myself. A couple related to falls, but two were more serious. The day after testing positive for COVID, I was hospitalized for two days in a Sydney ICU after being brought back from the brink of death. A couple of months later, Robert was hospitalized for eight days as ICU staff in Stuart wrestled him back from multiple infections and stroke level blood pressure readings.

UNCOOPERATIVE is the best word for Robert’s attitude towards nebulizer treatments and exercise between physical therapy sessions. He agrees to do it, but his mastery of procrastination makes for many days without either one.

UNDERSTANDING how to motivate Robert remains elusive.

An UNCOMFORTABLE transition of Robert’s household maintenance chores involved me working with contractors to service, repair or replace pool and lawn sprinkler pumps, washing machine, air conditioner, waste disposal, and outdoor pressure washing.

An UNUSUAL wedding anniversary celebration involved two chocolate chip muffins picked up on my way home from having my blood drawn.

UPLIFTING events and routine activities preserved my sanity as a newbie caregiver. I enjoyed meals and fellowship at church meetings. Worship, Bible reading and study for teaching Sunday School underpinned my perseverance and prayer for patience.

USE of my gifts as church clerk and a board member for a charter school for autism contribute to being salt and light in the world.

The UNPREDICTABILITY of the future stops me from making specific New Year goals. I’m content to let the Lord direct my steps in accord with Proverbs 16:9.

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For more of my writings, go to https://angelamuirvanetten.com where you can subscribe to my weekly blog and find retail links to my dwarfism memoir trilogy.

Categories
Celebrations

Good News Brings Joy

Reader Alert: this post deviates from my blog’s typical focus and doesn’t include a disability thread. However, the good news of Christmas applies to everyone—disabled and nondisabled alike.

AU Christmas stamps

Australian 1958 Christmas stamp of two shepherds with baby Jesus, Mary and Joseph brightened by the Star of Bethlehem.

It’s a joy to greet you this Christmas morning with the same message the angels delivered to the shepherds more than two millennia ago:

“[the angel of the Lord] said. “I bring you good news that will bring great joy to all people.The Savior—yes, the Messiah, the Lord—has been born today in Bethlehem, the city of David! And you will recognize him by this sign: You will find a baby wrapped snugly in strips of cloth, lying in a manger. . . They hurried to the village and found Mary and Joseph. And there was the baby, lying in the manger.” Luke 2:8-12, 16. New Living Translation (NLT).

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Although we no longer hurry to find the baby, Christians still rejoice in the good news that God sent His Son to save the world from judgment and to eternal life (John 3:16-17). And we commemorate this proclamation with nativity scenes depicted on ornaments, yard signs, Christmas cards, and postage stamps.

As a child who accepted Jesus as my Savior at age seven, I was especially drawn to nativity scenes on Christmas stamps. Indeed, my new birth in Christ in 1960 coincided with New Zealand (NZ) issuing its’ first Christmas stamp. And because I grew up in NZ my stamp collection is rich in NZ Christmas stamps.

NZ Christmas stamps

1960 to 1970 NZ Christmas stamps from my childhood stamp collection featuring reproductions of Old Master paintings by such as Correggio, Albecht Durer, Frederico Fiori, Gerard Honthorst, Carlo Maratta, Murillo, Nicolas Poussin, and Titian.

Australia issued a postage stamp portraying the shepherds honoring the baby Jesus in 1958. New Zealand highlighted the shepherds in 1960 with a reproduction of Rembrandt’s The Adoration of the Shepherds. This was a time when NZ’s Labor Government had strong Christian values and churches challenged the notion that Christmas was primarily about exchanging gifts and consuming excess amounts of food and alcohol. The United States (US) Postal Service resolved the secular versus religious debate by grouping four to six related secular stamps with a religious design.

According to a Christmas stamp vendor, over three billion Christmas cards and letters will be mailed in the US in December. A nativity stamp will adorn some of this mail, but secular images of cultural Christmas symbols will be dominant—bells, candles, children’s drawing, Christmas trees, flora and fauna, poinsettia and Pohutukawa (NZ Christmas tree), Santa, elves, and reindeer, Snow Globes and snowy landscapes, and wreaths. Sadly, the 2023 NZ Christmas stamp omits an actual nativity and uses colors to give a mere nod to Christian images. For example, the purple metallic paper on the $4.60 stamp is said to represent Jesus with the color associated with royalty and Advent.

Let’s do more than merely nod at Christmas and wish one another a Merry Christmas filled with actual love, joy and peace found in Christ our Lord and Savior.

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Disability Rights

AIRLINE PASSENGERS with DISABILITIES have RIGHTS: What’s in Our Bill?

Deplaning

“What do you mean my scooter must fly on a different plane from me? No, I have rights!” Many of my rights are documented in the 232 year-old Bill of Rights amending the United States Constitution. But more pertinent to my right to travel on the same plane as my scooter is the 18 month old Airline Passengers with Disabilities Bill of Rights. This bill codifies fundamental rights created by the Air Carrier Access Act directing airlines from the United States, foreign airlines operating in the U.S., and airline service contractors to honor passenger rights to:

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  1. Dignity and Respect

Although passengers shouldn’t be forced to accept special services or subjected to restrictions not imposed on other passengers, asking for early check-in, advanced notice or documentation, or pre-boarding to receive certain disability-related services is permitted.

2. Information About Available Services and Aircraft Capabilities and Limitations

The information must be specific to the aircraft scheduled for the flight, unless unfeasible, and include accommodation limitations involving level-entry boarding, aircraft storage, and accessible lavatories, for example.

3. Information in an Accessible Format

Aircraft size, passenger counts, and installation dates affect access requirements for websites and automated kiosks. Passengers who identify as needing visual or hearing assistance must receive prompt access to the same trip information as other passengers.

4. Accessible Airport Facilities

An accessible route between the gate and aircraft boarding location is required. When level-entry boarding is unavailable, ramps or mechanical lifts must service most flights. Service animal airport relief areas are also required.

5. Assistance at Airports

Trained airline personnel must provide timely enplaning and deplaning help using wheelchairs, accessible motorized carts, and ramps or lifts to move to and from the curb to departing or arriving flights, between gates, and to baggage claim or a restroom entrance.

6. Assistance on the Aircraft

If passengers self-identify as needing additional time or assistance to board, stow accessibility equipment, or be seated they must be allowed to board before all other passengers. On board help includes moving to and from seats or the lavatory and stowing and retrieving carry-on items.

7. Travel with an Assistive Device or Service Animal

Assistive devices typically count as free cabin carry-ons. Wheelchairs must be transported subject to safety, security, and size requirements. Compensation is required for lost, damaged, or destroyed wheelchairs or assistive devices. Service dogs may accompany passengers unless exceptions apply.

8. Seating Accommodations

Seats with a movable aisle armrest, space for a service animal, more leg room, or adjoining a personal care assistant must be given to passengers who identify to airline personnel if the seat exists on the same class of service.

9. Accessible Aircraft Features

New aircraft delivered after designated dates must comply with standards for movable aisle armrests, priority in-cabin wheelchair stowage space, accessible lavatories, and on-board wheelchairs.

10. Resolution of Disability-Related Issue

An expert Complaint Resolution Official must be available to resolve disability-related issues, including on the spot decisions. Passenger complaint procedures are outlined for airlines and applicable federal agencies.

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Disability Rights

PATIENTS HAVE RIGHTS: What’s in Their Bill?

bill of rights

“Hey, you can’t do that to me, I have rights!” And, on December 15, I’ll celebrate the rights enumerated in the 232 year-old Bill of Rights. Among these first ten amendments to the United States Constitution, Americans enjoy freedoms relating to religion, speech, assembly, bearing arms, search and seizure, prosecution, and punishment.

In recent history, a custom Bill of Rights has been written for various people, including children, passengers, patients, tenants, and taxpayers. Given my husband Robert’s 8-day October stint in hospital, this post focuses on a Patient’s Bill of Rights.

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As expected, a statement of Patient Rights and Responsibilities provides for nondiscriminatory care regardless of classification in a protected class like age, race, socioeconomic status, religion, or disability. Surprisingly I found introductory text (not part of the Patient’s Rights statement) limiting patient protections to those who are “sick or injured” and referring to disabilities as “challenges”—an inaccurate euphemism shading disability as a problem to overcome.

Robert’s rights were mostly respected during his stay as shown below:

  • His refusal to allow an ER doctor to insert an IV in the bone of his upper arm was accepted.
  • His interest in pastoral care was documented when he was being processed for hospital admission. As a result, he was visited by both his own church pastor and the hospital chaplain.
  • Communication between Robert and health care staff was facilitated by ensuring that he had access to his hearing aids.
  • The reasons for his transfer from a regular room to the Progressive Care Unit, staffed by ICU nurses, was explained.
  • He was informed and participated in decisions affecting his care, health status, services and treatment.
  • He was permitted to choose his spouse to assist him in care, treatment, and service decisions.
  • He was told what he needed to know about his health condition after hospital discharge.

However, the following rights were disrespected:

  • A hospital doctor did not inform Robert of the risks associated with inserting an IV in a vein in his upper arm in the location that might be needed for future kidney dialysis treatments. This was especially egregious given that Robert has stage four kidney disease and his treating physician would not have agreed to using this vein.
  • A nurse threatened the equivalent of a physical restraint when she chastised Robert for exiting a recliner chair without staff supervision. She treated Robert like a child when she threatened the consequence of putting him back in bed so that he couldn’t get up independently. Her issue was more about a staffing shortage than safety!
  • Individual dignity was trashed when he had to lay in his own excrement for an extended period of time after being plied with laxatives and a suppository.

Finally, even though Robert had a say in who could visit him, an out-of-reach handset prevented his wife from calling to request entry into the ICU. A Bill of Rights should provide accessibility to a patient’s disabled visitors.

Please share how well your rights as a patient have been protected.

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