DYING, ILLNESS, AND AGING WITH GRACE

• Desperate Families Search for Affordable Home Care (Reed Abelson, The New York Times and KFF Health News, The High Cost of Dying DYING BROKE series, 12-4-23) Facing a severe shortage of aides and high costs, people trying to keep aging loved ones at home often cobble together a patchwork of family and friends to help.
• Dying Can Cost Loved Ones $20,000 Before Lost Wages And Worse Health, New Report Says (Deb Gordon, Forbes, 1-16-23)

"On average, survey respondents reported that they paid $3,584 to the funeral home Read More 

In three sections:

Being trans in America (Washington Post/KFF survey and series)

Whistleblower in a small gender clinic

More information, articles

 

BEING TRANS IN AMERICA    

The excellent Washington Post/KFF survey and series (2023)

Contributors: Casey Parks, Emily Guskin, Scott Clement, Annys Shin, Fenit Nirappil, Hannah Natanson, Tara Bahrampour, Laura Meckler, Anne Branigin.

 

• Understanding Trans Identity in the U.S.

  Gender identity differs from sexual orientation.

     Many trans adults don't identify as a man or a woman.

     Most trans adults say transitioning helped them.

  Nearly 8 in 10 trans adults  (78%) say that living as a gender different from the one assigned to them at birth has made them "more satisfied" with their life, including 45% who say they are "a lot more satisfied."
• Most trans adults say transitioning made them more satisfied with their lives 

The Washington Post and KFF surveyed one of the largest randomized samples of U.S. transgender adults to date about their childhoods, feelings, and lives.
• Voices of trans people in America: ‘I’ve always known I was different’

   Four trans people share their stories. With photos.
• ‘I kept it very secret’: One trans woman’s journey transitioning in the military after ‘Don’t Ask, Don’t Tell’ repeal (Ana Golden, WTOP, 6-29-24) Hearing the words ‘covert operation' may make you think of the military. In Karen Holmes' case, it was her experience transitioning and hiding the fact that she was transgender after she joined the Maryland Defense Force in 2011.

  
• How to Be a Girl: Daily life with my transgender daughter (Marlo Mack's wonderful podcast) And listen to the book. What's it like to parent a child in transition?

"Inspired by the acclaimed podcast How to Be a Girl, this is a highly personal and beautifully narrated memoir by Marlo Mack recounting the journey she's been on since her three-year-old declared he should have been born a girl. And Mack agrees to the child's request to be a girl. But getting the world to go along is another story."
• From He to She in First Grade (Laurie Frankel, NY Times, 9-18-16) A novel about how a family deals with a boy who wants to become a girl.

• Special Issue on the Trans Experience (Zoë Bossiere, Brevity Magazine, 1-21-24) New writing by Lee Anderson, Nic Anstett, Kay Ulanday Barrett, KB Brookins, Rivka Clifton, Mac Crane, Atlas Desmond, Melissa Faliveno, Eric LeMay, Katherine Scott Nelson, Mattilda Bernstein Sycamore and Ocean Wei. With gorgeous visual work by artist Kah Yangni. Twelve new essays by Lee Anderson, Nic Anstett, Kay Ulanday Barrett, KB Brookins, Rivka Clifton, Mac Crane, Atlas Desmond, Melissa Faliveno, Eric LeMay, Katherine Scott Nelson, Mattilda Bernstein Sycamore and Ocean Wei. Visual work by artist Kah Yangni. 12 brief essays (readable online) "touch on myriad facets of what it means and how it feels to be transgender, gender-nonconforming, and/or gender-expansive. Trans experience is not a monolith, but rather a collective, each story a prism containing shared truths filtered through an individual lens. The essays contain themes like becoming and belonging, coming out and pushing through. The limitations of the gender binary, and the freedoms inherent in embracing liminality." You have to search for the pieces, some of which may appear as Essays about the Transgender experience (on The Brevity Blog)
• How historians are documenting the lives of transgender people (Erin Blakemore, National Geographic, 6-24-22) "The term “transgender” wasn’t coined until the 1960s—but people have always challenged the gender binary. Here’s a look at their history, from ancient civilizations to the modern rights movement. "In 1999, trans activist Monica Helms designed a symbol that would come to define a movement: the transgender pride flag. Using blue and pink stripes—colors with deep connections to gender assignment—the flag also featured a white stripe to represent people who are intersex, transitioning, or nonbinary."
•  6 key takeaways from the Post-KFF survey of transgender Americans

      Among them,

        1. Whether a trans person is out to family and friends depends on their age.

        4. Many transgender people knew they were trans from a young age.

        6. Most transgender adults say living as a gender different from the one assigned to them at birth improved their lives.

• For trans people, medical visits can be more traumatizing than healing

        Trans patients share stories of subtle discrimination, outright hostility and ill-informed medical professionals

• California bill bans school districts from ‘outing’ transgender students to their parents (Andrew Sheeler and Jenavieve Hatch, Sacramento Bee, 5-22-24) The policies, which several conservative-leaning school boards across the state enacted over the last year, require school staff to inform a student’s parents if the student shows signs of being transgender. Such signs can include going by a different name and using pronouns that don’t align with their biological sex. The new bill is the latest volley in a political war that’s been raging for more than a year. How others are fighting this trend.

• School is a ‘nightmare’ for trans and nonbinary kids. Here’s why.

      In a sweeping Washington Post-KFF poll, 45% of trans adults said school made them feel unsafe

• Trans people have never been so visible — or so vulnerable
• Six works that capture the complexity of being trans in America:

     'Both Sides Now' by Peyton Thomas; 'One From the Vaults'; 'Veneno'; 'Femme Queen Chronicles';'Big Dad Energy: A Trans-Masculine Comedy Showcase'; and 'Framing Agnes'
• Most Americans support anti-trans policies favored by GOP

    Most adults say gender is based on sex assigned at birth. Most Americans say trans women and girls should not be allowed to compete in sports with other women and girls. Etc.
• Trans lawmaker Brianna Titone tried not to stand out. Then a gunman killed 5 at Club Q

     This session, she wanted to do more than outvote the Republicans. She wanted to win them over, too.
• Trans kids crave acceptance at school in a nation that often resists it

     They had sensed already that something was different about their own gender identity but didn't know what. "I didn't have the words for 'transgender' or 'nonbinary' or any of this."
• In middle age, they realized they were trans: ‘A lightbulb went off’

     Roughly one-fifth of trans adults 45 and older have not told anyone they are trans, a Washington Post-KFF poll conducted late last year found
• 1 in 4 Transgender Adults Say They’ve Been Physically Attacked, New KFF/Washington Post Partnership Survey Finds

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Whistleblower in a small gender clinic

• How a Small Gender Clinic Landed in a Political Storm (Azeen Ghorayshi, NY Times, 8-23-23) Washington University’s youth gender clinic in St. Louis, like others around the world, was overwhelmed by new patients and struggled to provide them with mental health care. "But as the number of these patients soared, the clinic became overwhelmed — and soon found itself at the center of a political storm. In February, Jamie Reed, a former case manager, went public with explosive allegations, claiming in a whistle-blower complaint that doctors at the clinic had hastily prescribed hormones with lasting effects to adolescents with pressing psychiatric problems."
      "The reality was more complex than what was portrayed by either side of the political battle, according to interviews with dozens of patients, parents, former employees and local health providers, as well as more than 300 pages of documents shared by Ms. Reed.

     "Some of Ms. Reed’s claims could not be confirmed, and at least one included factual inaccuracies. But others were corroborated, offering a rare glimpse into one of the 100 or so clinics in the United States that have been at the center of an intensifying fight over transgender rights.

     "The turmoil in St. Louis underscores one of the most challenging questions in gender care for young people today: How much psychological screening should adolescents receive before they begin gender treatments?"  This story about the controversy came out after The Free Press first broke the news.

---I Thought I Was Saving Trans Kids. Now I’m Blowing the Whistle (Jamie Reed, The Free Press/TFP, 2-9-23)

[In 2018 Reed was a case manager at The Washington University Transgender Center at St. Louis Children's Hospital, which had been established a year earlier.]

      "There are more than 100 pediatric gender clinics across the U.S. I worked at one. What’s happening to children is morally and medically appalling. By the time I departed, I was certain that the way the American medical system is treating these patients is the opposite of the promise we make to “do no harm.”
      "At first, the patient population was tipped toward what used to be the 'traditional' instance of a child with gender dysphoria: a boy, often quite young, who wanted to present as—who wanted to be—a girl. Until 2015 or so, a very small number of these boys comprised the population of pediatric gender dysphoria cases. Then, across the Western world, there began to be a dramatic increase in a new population: Teenage girls, many with no previous history of gender distress, suddenly declared they were transgender and demanded immediate treatment with testosterone.
      "As the center’s website said, 'Left untreated, gender dysphoria has any number of consequences, from self-harm to suicide. But when you take away the gender dysphoria by allowing a child to be who he or she is, we’re noticing that goes away. The studies we have show these kids often wind up functioning psychosocially as well as or better than their peers.'  

      "There are no reliable studies showing this. Indeed, the experiences of many of the center’s patients prove how false these assertions are."
      "So many critics and media outlets tried to paint not just me but the entire issue of transgender youth as a showdown between the right and left. As a lifelong member of the left, a queer woman married to a transman, I’d clearly been brainwashed or paid off—or probably even both—by conservatives."

     Many of the following articles are linked to in this article.

• Jamie Reed's letter to the Missouri Attorney General (1-26-23) 

• Missouri AG officially probing ‘disturbing’ whistleblower claim that transgender clinic ‘harming hundreds’ of kids (Lee Brown, NY Post, 2-10-23)

• Missouri Anti-trans "Whistleblower" Story Is a Manufactured Controversy - Point By Point (Erin Reed, Erin in the Morning, 2-10-23)

    Disputes Reed's points, one by one, concluding, "In fact, the findings around gender affirming care are so stunningly in favor of proceeding with that care that 29 major medical organizations representing hundreds of thousands of physicians have signed off to that care" (and lists them).

• The Courage to Admit You’re Wrong (Jamie Reed, The Free Press, 12-31-23) Jamie Reed became a lightning rod in TFP after she blew the whistle about the mistreatment of minors at The Washington University Transgender Center at St. Louis Children’s Hospital, where she’d worked as a case manager for four years. Her revelations sparked an investigation of the clinic by the Missouri Attorney General, and this helped lead lawmakers in Missouri and other states to pass bans on gender transition of minors.

    "When I blew the whistle on a transgender clinic, some suggested I had been 'brainwashed by the right.'   "As a lifelong member of the left, a queer woman married to a transman, I'd clearly been brainwashed or paid off—or probably even both—by conservatives. I had a 'clear ideological bias.' No. I'm a progressive who follows science.

• The Bigger Picture Continues – Denver, Colorado (Genspect, 7-11-23) Jamie Reed spoke at the first U.S. conference for Genspect, an organization that discourages gender transitioning of minors. See YouTube videos from that conference here

       

 

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More information and articles about the trans experience
• What do I need to know about transitioning? (AARP fact sheet)
• Young Trans Children Know Who They Are (Ed Yong, The Atlantic,1-15-19) A new study shows that gender-nonconforming kids who go on to transition already have a strong sense of their true identity—one that differs from their assigned gender. Since the study’s launch, Olson has also heard from the parents of gender-nonconforming kids, who consistently defy gender stereotypes but have not socially transitioned. They might include boys who like wearing dresses or girls who play with trucks, but who have not, for example, changed the pronouns they use. Those parents asked whether their children could participate in the study. Olson agreed.
• Coming Out as a Trans Woman at Fifty-Eight (New Yorker video, 10-27-21) “The Paint Wizzard,’ by Jessie Auritt and Jessica Wolfson, follows Millie, a larger-than-life trans woman who recently came out, as she paints houses in Austin, Texas, and shares the struggles and joys of embracing her true self.
---Connecting with Trans History, Rebellion, and Joy, in “Compton’s 22” (New Yorker video, 6-4-24)
• Understanding the Transgender Community (Human Rights Campaign, HRC Foundation) "Transgender people come from all walks of life, and HRC Foundation has estimated that there are more than 2 million of us across the United States. We are parents, siblings, and kids. We are your coworkers, your neighbors, and your friends. We are 7-year-old children and 70-year-old grandparents. We are a diverse community, representing all racial and ethnic backgrounds, as well as all faith traditions."
     Some of the specific issues facing the trans community are: [brief sections on] Lack of legal protection; Poverty; Stigma, Harassment and Discrimination; Lack of Healthcare Coverage; Identity Documents.

Three HRC publications:
---HRC’s Brief Guide to Reporting on Transgender Individuals
---Debunking the Myths: Transgender Health and Well-Being
---Glossary of Terms.
   "Transgender" is "an umbrella term for people whose gender identity and/or expression is different from cultural expectations based on the sex they were assigned at birth. Being transgender does not imply any specific sexual orientation. Therefore, transgender people may identify as straight, gay, lesbian, bisexual, etc.
• The Experiences, Challenges and Hopes of Transgender and Nonbinary U.S. Adults (Anna Brown, Juliana Menasce Horowitz, Kim Parker and Rachel Minkinn, Pew Research Center, 6-7-22) Findings from Pew Research Center focus groups, under these headings:

    Identity and the gender journey

    Navigating gender day-to-day

    Seeking medical care for gender transitions

    Connections with the broader LGBTQ+ community

    Policy and social change

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• Bathroom Bills Are Back — Broader and Stricter — In Several States (Jazmin Orozco Rodriguez, KFF Health News, 2-29-24) State lawmakers — predominantly in conservative, rural states — are resurrecting and expanding efforts to prohibit transgender people from using public restrooms and other spaces that match their gender. Some have sought to ban trans people from “sex-designated spaces,” including domestic violence shelters and crisis centers, which experts say could violate anti-discrimination laws and jeopardize federal funding.
• This is me, as I am’: A photographer documents her own gender transition (Allison Lippy, National Geographic, 6-24-22) In 2015, Allison Lippy realized who she had always been—and turned her camera on herself to understand her journey as a transgender woman. Excellent photographs.
• How historians are documenting the lives of transgender people(Erin Blakemore, National Geographic, 6-24-22)The term “transgender” wasn’t coined until the 1960s—but people have always challenged the gender binary. Here’s a look at their history, from ancient civilizations to the modern rights movement.
• Transgender rights in the United States (Wikipedia entry, full of information and links) Marriage, parental rights, reproductive rights, identity documents (name change, birth certificates, cases, driver's licenses, passports, persons not born in the United States, third gender option, US jurisdictions with "gender X" driver's licences, death certificates), housing, genocide, government list of trans people, physical violence, sexual violence, displacement and sanctuary states, discrimination protections (employment, laws--federal, state and local, chart), cases, education (Main article: Gender identity under Title IX) (local school boards), employment, public factors (social media, politicians, media involvement, grooming conspiracy theory); restroom access (indecent exposure charges for restroom use, schools, workplace); Hate crimes legislation; Healthcare (treatment for adults, treatment for children, bans of gender-affirming healthcare for people under 18--chart, by states ), awareness of providers, discrimination, Catholic hospitals, "trans broken arm syndrome" (common form of discrimination), medical privacy, insurance; Prisoners' rights, V-coding; immigration; military; taxes; sports; Biden administration rule change; references.
• What Is Gender Transitioning? (S. Nicole Lane, VeryWellHealth, 7-2-23) Gender transitioning, known more commonly today as gender affirmation, not only involves aesthetic appearances but may also involve changes in social roles, legal recognitions, or physical aspects of the body. Gender transitioning is often described as a binary (male or female) but can also be non-binary, meaning a person is neither strictly male nor female.

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• Transition Roadmap (UCSF Transgender Care)
• Breaking the Silence: The Reality of De-Transitioning (YouTube video, NBCNews Spotlight, 9-11-23)
• 'I regret trusting' the doctors who pushed me to transition gender (YouTube video, Times Radio, 6-4-23)
• Interim Report (The Cass Review, UK, Feb 2022) Children and young people with gender incongruence or dysphoria must receive the same standards of clinical care, assessment and treatment as every other child or young person accessing health services. 
       "The care of this group of children and young people is everyone’s business. Our initial work indicates that clinicians at all levels feel they have the transferable skills and commitment to support these children and young people, but there needs to be agreement and guidance about the appropriate clinical assessment process that should take place at primary, secondary and tertiary level, underpinned by better data and evidence.  At this stage the Review is not able to provide advice on the use of hormone treatments due to gaps in the evidence base. Recommendations will be developed as our research programme progresses."

• Youth Access to Gender Affirming Care: The Federal and State Policy Landscape (Lindsey Dawson, Jennifer Kates, and MaryBeth Musumeci, KFF, 3-24-23)

     "Numerous states have implemented or considered actions aimed at limiting LGBTQ+ youth access to gender affirming health care. Four states (Alabama, Arkansas, Texas, and Arizona) have recently enacted such restrictions (though the AL, AR, and TX laws all have been temporarily blocked by court rulings) and in 2022, 15 states are considering 25 similar pieces of legislation. At the same time, other states have adopted broad nondiscrimination health protections based on gender identity and sexual orientation. Separately, the Biden administration, which has been working to eliminate barriers and expand access to health care for LGBTQ+ people more generally, has come out against restrictive state policies. This analysis explores the current state and federal policy landscape regarding gender affirming services for youth and the implications of restrictive state laws."

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First articles, then books. Updated from an earlier version.

 

• See below a list of books about wrongful convictions and related issues, recommended by the highly valued Innocence Project, which works nationwide to free the innocent and reform our criminal justice system. See The Innocence Project: A Short History Since 1983 (Black Past). "DNA testing has exonerated more than 345 innocent people in the United States – and others are still waiting for justice."
• Also of interest: The Equal Justice Initiative (EJI), based in Montgomery, Alabama, "provides legal representation to prisoners who may have been wrongly convicted of crimes, poor prisoners without effective representation, and others who may have been denied a fair trial." Read about it in the bestseller Just Mercy: A Story of Justice and Redemption by Bryan Stevenson.  On EJI's website (with links to material on racial justice, children in prison, mass incarceration, the death penalty, and "just mercy"): "Since 1973, 166 people have been released from death row after evidence of their innocence was uncovered. A shocking rate of error has emerged: for every nine people executed in this country, one innocent person has been exonerated."

 

Articles about wrongful convictions (and exonerations)

• Crime victims form unlikely bonds with wrongfully convicted men (Leslie Stahl, 60 Minutes, 3-17-24)
• Capturing the emotional journey of Healing Justice (Will Croxton, 60 Minutes, 3-17-24)
• Why rape survivors and exonerees went on a retreat together (Lesley Stahl, Aliza Chasan, Shari Finkelstein, Collette Richards, 60 Minutes Overtime, 3-17-24) A rape survivor, guilt ridden after learning that an innocent man had been sent to prison in her case, brings together crime victims and exonerees to help heal those impacted by wrongful convictions.
• Finally, Justice (Jake Tapper, The Atlantic, 3-24) Two years ago, he wrote an Atlantic cover story about the case of C. J. Rice, a Philadelphia teenager convicted of attempted homicide. Today, Rice was exonerated. C. J. Rice is now a free man.
---C. J. Rice’s Conviction Is Overturned (Andrew Aoyama, The Atlantic, 11-28-23) After a cover story in The Atlantic, a man convicted of a crime he insists he did not commit now has a chance to be freed from prison.
• Sentenced to death, but innocent: These are stories of justice gone wrong. (Phillip Morris, National Geographic, 2-18-21) Since 1973, more than 8,700 people in the U.S. have been sent to death row. At least 182 weren’t guilty—their lives upended by a system that nearly killed them.
• More than half of all wrongful criminal convictions are caused by government misconduct, study finds (Tom Jackman, Washington Post, 9-16-20) Misconduct can be intentional or unintentional, but either way innocent people are found guilty
• Government Misconduct and Convicting the Innocent:The Role of Prosecutors, Police and Other Law Enforcement (Samuel R. Gross, Maurice J. Possley, Kaitlin Jackson Roll, Klara Huber Stephens,National Registry of Exonerations, 9-1-20) The study cites five types of misconduct that lead to wrongful convictions: witness tampering, misconduct in interrogations, fabricating evidence, concealing exculpatory evidence and misconduct at trial. It found that Black defendants were slightly more likely than White defendants to be victims of misconduct, 57 percent to 52 percent, but that the racial difference was much larger for drug crimes — 47 to 22 percent — and in murder cases, 78 to 64 percent. In some instances, authorities purposefully sought to improperly influence a case; other times their missteps were unintentional or based on flawed techniques.
• National Registry of Exonerations (a project of the Newkirk Center for Science & Society at University of California Irvine, the University of Michigan Law School and Michigan State University College of Law) See Registry tallies over 2,000 wrongful convictions since 1989 ( David G. Savage, Washington Bureau, Los Angeles Times, 5-20-12) More than 2,000 people have been freed from prison in the U.S. since 1989 after they were found to have been wrongly convicted of serious crimes, according to a new National Registry of Exonerations compiled by University of Michigan Law School and Northwestern University. Follow Exoneration Registry.

• % Exonerations by Contributing Factor (National Registry of Exonerations) Factors: Mistaken Witness ID, Perjury or False Accusation, False Confession, False or Misleading Forensic Evidence, Official Misconduct.
• Wrongful conviction podcasts
• Wrongful Convictions (National Institute of Justice) Articles and other resources on such topics as DNA testing,forensic science, erroneous identification.
• Causes of wrongful conviction (Innocence Clinic, Michigan Law, University of MIchigan)

• List of Wrongful Convictions (Wikipedia)
• New Docuseries Highlights the Impact of Wrong Convictions (Sameer Rao, ColorLines, 10-30-18) The first episode of Vice’s “Innocence Ignored” explores the many drawbacks of Alford pleas, which prevent compensation for the wrongfully convicted.
• Wrongful Convictions: A New Exoneration Registry Tests Stubborn Judges (Andrew Cohen, The Atlantic, 5-21-12)
• Righting Wrongful Convictions of Youth: What You Can Do (Terry Keleher, ColorLines, 10-4-09) Each year in the US, millions of young people interact with juvenile and criminal courts where they often face unfair treatment and racial discrimination.
• The Neighbors Who Destroyed Their Lives (Robert Kolker, The Atlantic, 12-22-23) Murder and lies in small-town Hawaii. "Wrongful convictions can result from any number of cascading errors, blatant oversights, and outright slipups—some conscious and deliberate, some structural and circumstantial. Over 32 years, the investigation and prosecutions of the Schweitzers seem to have incorporated every possible one of them. There was intense media attention putting pressure on police to make an arrest—the “dead white girl” phenomenon. There was cultural bias against Native Hawaiians like the Schweitzers—the legacy, well known to Hawaiians, of lynchings of native men for alleged attacks on white women. There was investigative tunnel vision—going after the Schweitzer brothers even after the facts failed to support that case. There was blind faith in jailhouse informants—a slew of them, all hoping for special favors from prosecutors in return for their testimony. There was junk science—about teeth marks, and tire treads. There even may have been prosecutorial misconduct—a state lawyer misleading a judge about the outcome of one of the brothers’ polygraph tests."
• Articles about wrongful convictions (ColorLines)

 

Books about wrongful conviction and related issues

*DISCLOSURE: Buy anything from Amazon after clicking on a link here and I get a minuscule referral fee for your purchases, with no additional cost to you. Even better, encourage your library to buy these books from the publisher, and check them out of the library.

 

• Actual Innocence: When Justice Goes Wrong and How to Make it Right by Barry Scheck, Peter Neufeld, and Jim Dwyer (2000)
• Adams vs. Texas: The True Story Made Famous by the Highly Acclaimed Film The Thin Blue Line by Randall Adams, with William Hoffer and . Read More 

Here's Bonnie Estridge's amazing series on Life with Alzheimer's, published in The Mail on Sunday (the Daily Mail, UK)

• Alzheimer's won't defeat me, I have so much to look forward to: One sufferer's defiant message as dementia rates in Britain soar (The Mail on Sunday, 11-11-17)

Bonnie Estridge can remember seeing Bob Dylan at the Isle of Wight Festival in 1969 but forgets simple words she uses on a daily basis. Doctors in London fear she has Alzheimer's.

• 'So what if I lose my keys - they'll turn up': BONNIE ESTRIDGE on not letting Alzheimer's get in the way of her life (Bonnie Estridge for The Mail on Sunday, Daily Mail UK, 7-21-18) Journalist Bonnie Estridge, 66, from London, offers a refreshingly upbeat approach to living life with the illness that she refers to as 'the A-word'.

• The A-word: Bonnie Estridge has Alzheimer's... but life goes on (8-18-18)

Bonnie Estridge, 67, was diagnosed with Alzheimer’s disease last year. Here she gives her undeniably upbeat take on life with the illness she calls ‘the A-word’.

• The real agony of going to the dentist? Getting lost on the way! (9-15-18)

BONNIE, 67, was diagnosed with Alzheimer’s disease last year. Here, her undeniably upbeat take on life with the illness she calls ‘the A-word’.

• Helping hand from Downton creator on my luvvie night out: BONNIE ESTRIDGE on how Alzheimer’s is portrayed in the media (10-13-18)

Bonnie Estridge describes stepping out of her comfort zone by agreeing to give a speech at a Channel 4 event in London, organised in conjunction with the Alzheimer’s Society.

• The unbearable question: How long will I live? (11-24-18)

How long am I going to live? I’m not normally introspective, but the question was sparked a few weeks ago when I visited my friend Melanie’s mum, who is in the local care home. 

• My gravy meltdown and how it led to my Alzheimer's diagnosis: on how Christmas is the best time to spot dementia (12-17-18)

Two years ago, the stress of Christmas prompted something serious: One of the first clear signs of something that would change our family Christmases, and our lives, for ever.

BONNIE ESTRIDGE: This year the girls are coming over for Christmas Day, and my husband Chris will work his magic with a small turkey. Seeing them is what it's all about for me.

 

• Should I give up shopping in case I become a thief? (1-26-19)

A recent study found eight per cent of dementia patients ended up committing crimes, including theft.

 

• Friends reunited on a trip back to the summer of '69 (2-16-19)

The other day, BONNIE ESTRIDGE read a quote somewhere online that said ‘adult friendships are two people saying, “I haven’t seen you in ages – we should hang out more until one of you dies’.

 

• Don't laugh, but I've watched Bohemian Rhapsody 12 times (4-14-19)

I don’t really remember a lot of it, so it’s just as enjoyable every time. Watching the film over and over is a comforting routine.

 

• I keep forgetting that I've got this horrible illness (5-11-19)

I am writing this column from my hotel room in Barcelona, sporting a large plaster on my left knee. Chris and I are on holiday to see an old friend and explore the city.

 

• A bus stop in my dementia ward? It's just the ticket (6-15-19)

A few weeks ago, a bus stop appeared slap bang in the middle of the dementia ward at my local hospital, St George's in London. There it was, complete with the iconic red circle.

 

• Do you forget your passwords? Imagine what it's like being me, says BONNIE ESTRIDGE in her latest despatch on life with Alzheimer's (7-20-19)

Anything I can actually remember is labelled 'weak'. Eventually, in frustration, I'll put something in so complex it has to be written down.

 

• Why, with huge reluctance, I'm off the booze: (8-24-19)

I have given up booze. Completely, on doctor's orders. I haven't touched a drop for more than a month and I'd be lying if I said I didn't miss it.

 

• When I played the beautiful game – in Biba high heels (9-28-19)

I went to Wembley to watch England play in the 1966 World Cup. And my first taste of playing came - yes, I did! - when I was about 20, while working for Vanity Fair magazine.

• 'It might sound strange... but life's still good': BONNIE ESTRIDGE reflects on how having Alzheimer's means she's no longer one of life's worriers (11-9-19)

I don't rake over the events of the day in my head. I don't worry or ruminate. I suppose it's all to do with the fact that my short-term memory is bad.

• BONNIE ESTRIDGE on life with Alzheimer's: They've banned me from the kitchen… and I'm delighted! (12-21-19)

This year the girls are coming over for Christmas Day, and my husband Chris will work his magic with a small turkey. Seeing them is what it's all about for me.

• A new test for my illness… sniffing peanut butter! (7-18-20)

Have you heard of the peanut butter test for Alzheimer's? If you can't smell it, it could be an early-warning sign of the disease.

• I can tell the time but can't draw a clock... that's scary 8-15-20)

When it comes to clocks, I had a bit of a horrible realisation recently when my husband asked me to draw one on a blank piece of paper, and, as hard as I tried, I just couldn't. 

• Don’t call Monika my carer... she’s my friend and personal shopper!

(Bonnie Estridge, Daily Mail UK, 7-31-21)

I bought a bottle of elderflower cordial while I was pottering around the shops the other day with my new friend Monika. I say she's my friend. In fact, she's my carer.

 

Here's a link to the whole series (I hope it still works!)

Tricia Anne Meyer posted this on Facebook (with a helpful illustration and many practical comments).  I am reposting the list here, because it is so helpful!

 

So, I spoke to people getting food at a food bank and here are some things I learned from those in need:
1. Everyone donates Kraft Mac and Cheese in the box. They can rarely use it because it needs milk and butter which is hard to get from regular food banks.
2. Boxed milk is a treasure, as kids need it for cereal which they also get a lot of.
3. Everyone donates pasta sauce and spaghetti noodles.
4. They cannot eat all the awesome canned veggies and soup unless you put a can opener in too or buy pop tops.
5. Oil is a luxury but needed for Rice a-Roni which they also get a lot of.
6. Spices or salt and pepper would be a real Christmas gift.
7. Tea bags and coffee make them feel like you care.
8. Sugar and flour are treats.
9. They fawn over fresh produce donated by farmers and grocery stores.
10. Seeds are cool in Spring and Summer because growing can be easy for some.
11. They rarely get fresh meat.
12. Tuna and crackers make a good lunch.
13. Hamburger Helper goes nowhere without ground beef.
14. They get lots of peanut butter and jelly but usually not sandwich bread.
15. Butter or margarine is nice too.
16. Eggs are a real commodity.
17. Cake mix and frosting makes it possible to make a child's birthday cake.
18. Dishwashing detergent is very expensive and is always appreciated.
19. Feminine hygiene products are a luxury and women will cry over that.
20. Everyone loves Stove Top Stuffing.

In all the years I have donated food at the Holidays, I bought what I thought they wanted, but have never asked. I am glad I did. If you are helping a Family this Christmas, maybe this can help you tailor it more. It does for me! ~ Tricia Anne Meyer

• Kaiser Health News
• New York Times: Health
• CNN: Health
• BCC: Health
• Washington Post: Health and Science

 Read More 

******AUDIO RECORDING without two party consent IS ILLEGAL in the State of MD. But private security cameras are not.

 

• My Neighbor’s Door Camera Faces My Apartment. Is That Legal? (Ronda Kaysen, NY Times, 8-28-21) Rental tenants typically cannot install cameras — or anything else — in common hallways. But landlords can.

    “The courts have held that the landlord has a right to put a camera in the hallway and even disguise it,” Mr. Frazer said.

 

• Is it Legal to Record Audio or Video In Maryland without Consent? (Jeffrey M. Bernstein for Greater Baltimore Board of Realtors, 3-27-19) It is legal in Maryland to record surveillance video with a camera in your home, including the front porch, without the consent of the person(s) you are recording. Maryland does forbid audio recording of private conversations without the consent of all parties.

 

• Maryland State Laws on Video Camera Surveillance Recording on Private Property (Mobile VideoGuard.com, 6-8-20) Presents the state laws in Maryland regarding surveillance recording, and who may be recorded.

      "When you post these cameras that are only video surveillance, make sure that they are only pointed in the direction of public or community areas. Having these video surveillance cameras posted in areas where privacy is expected by guests, customers, or patrons is illegal....While you are able to disguise cameras, do not attempt to record any audio surveillance without the knowledge and consent of those speaking in the conversation."

 
• Is Your Ring Doorbell Invading Other People's Privacy? (Kinza Yasar, MakeUseOf, 10-22-21) "Drawing a line between privacy and security is not always easy. While the Federal law in the United States forbids people from installing recording devices in private areas such as a locker room, there are no stringent legalities in place for homeowners wishing to install smart doorbells on their properties.
       However, in the wake of growing criticism and legal debates, Amazon recently issued a statement saying: “We strongly encourage our customers to respect their neighbors’ privacy and comply with any applicable laws when using their Ring product.”
       "As a Ring doorbell owner, there will be times when you might end up recording something that falls under the gray zone of legality. But as long as your doorbell is in plain sight, is installed correctly, and not pointing at your neighbor's property, you should have little to worry about." [One apartment dweller we know points their device toward the hallway but not toward the door of the neighbor across the hall.]

 

• BILL 14-22: POLICE – PRIVATE SECURITY CAMERA INCENTIVE PROGRAM – ESTABLISHED (Racial Equity and Social Justice (RESJ) Impact Statement Office of Legislative Oversight)

        The purpose of Bill 14-22 is to increase police surveillance in communities that the Montgomery County Police Department (MCPD) deems to be high crime areas. Toward this end, Bill 14-22 authorizes the establishment of a program that incentivizes residents and businesses in “priority areas” to install private security cameras. MCPD encourages current residents and business owners with private security cameras to join the Nextdoor platform to “provide real-time crime updates.”

        Presumably, the intent of Bill 14-22 is to encourage more residences and businesses to join Nextdoor by offsetting the cost of private security cameras in areas where they are less ubiquitous.

 

• Montgomery County resident Brian Curtis points out: "Cameras ARE legal and actually encouraged by [Montgomery County MD] Council Member Jwando & County Executive Elrich. "The entity [condo organization etc.]  is entitled to almost a full rebate.

      *Individual owners do not receive a rebate. See preceding link to bill and resolution: Mont. Co.Bill 14-22, Police – Private Security Camera Incentive Program.

    

Today, instead of providing a guardrail against useless, expensive treatment, pre-authorization prevents patients from getting the vital care they need.

• Feds Move to Rein In Prior Authorization, a System That Harms and Frustrates Patients (Lauren Sausser, KHN, 3-13-23) Few things about the American health care system infuriate patients and doctors more than prior authorization, a common tool whose use by insurers has exploded in recent years. Prior authorization, or pre-certification, was designed decades ago to prevent doctors from ordering expensive tests or procedures that are not indicated or needed, with the aim of delivering cost-effective care. Originally focused on the costliest types of care, such as cancer treatment, insurers now commonly require prior authorization for many mundane medical encounters, including basic imaging and prescription refills.
      So today, instead of providing a guardrail against useless, expensive treatment, pre-authorization prevents patients from getting the vital care they need, researchers and doctors say. It’s not just patients who are confused and frustrated by the process. Doctors said they find the system convoluted and time-consuming, and feel as if their expertise is being challenged.

• I Write About America’s Absurd Health Care System. Then I Got Caught Up in It. (Bram Sable-Smith, KHN, 1-25-22) The insurance industry defends "prior authorization" as protecting patient safety and saving money. It feels like a lot of paperwork to confirm something we already know: Without insulin, I will die. The time wasted by me, the pharmacists, the nurses and probably some insurance functionaries is astounding and likely both a cause and a symptom of the high cost of medical care. The problem is also much bigger than that.

• What are the downsides to Medicare Advantage? (Explainer NY Times, 11-20-22) One big downside [to Medicare Advantage alternatives to Medicare] is that these insurers require "prior authorization," or approval in advance, for many procedures, drugs or facilities. Advantage participants who are denied care can appeal, and those who do so see the denials reversed 75 percent of the time, but only about 1 percent of beneficiaries or providers file appeals. Before signing up for a Medicare Advantage plan, understand that anytime you want care other than an emergency, the plan has to approve it. So "think very carefully before you switch out of traditional Medicare, which lets you see just about any doctor or go to any hospital." One topic under Which to Choose: Medicare or Medicare Advantage?

• Prior authorization rules: Yet another way the health insurance system frustrates physicians and patients (Joseph Burns, Covering Health, Association of Health Care Journalists, 8-9-18) "For patients and physicians, many aspects of the health care and health insurance systems are frustrating and appear to be needlessly complex.
      One of the most frustrating processes is prior authorization, the mother-may-I approach health insurers use to ensure that procedures, medications and even certain care processes are appropriate and worthy of coverage. AHCJ members can access a tip sheet on covering this topic.

• Why So Slow? Legislators Take on Insurers’ Delays in Approving Prescribed Treatments (Michelle Andrews, KHN,5-17-22) Insurers say prior authorization requirements are intended to reduce wasteful and inappropriate health care spending. But getting that approval can take as many as three weeks, and patients sometimes run out of insulin before it comes through. Doctors say that insurers have yet to follow through on commitments to improve the process.
      Prior authorizations take up on average almost two business days—14.9 hours—each week to complete. This leads to hiring staff who are dedicated solely to processing prior authorizations.

 
• Pros and Cons of Prior Authorization for Value-Based Contracting (Kelsey Waddill, Health Payer Intelligence) Prior authorizations seem to also enforce the evidence-based care goals of value-based care. One of the major goals of value-based contracts and systems is to reduce unnecessary paperwork so that providers can dedicate more time to high-quality patient care. However, providers have found that prior authorizations often stand in the way of this aim.

       Also, recent research demonstrated that in some cases prior authorizations may be weaponized as tools for discrimination. instead of serving the patient population as designed. In the South, some qualified health plans on the Affordable Care Act have been shown to place prior authorizations on PrEP therapy for HIV patients.
       Plans in the South were 16 times more likely to place a prior authorization on the HIV therapy than plans in the Northeast where prior authorizations for these therapies were lowest. Yet prior authorizations are typically only applied when there are multiple drugs to choose from for a particular condition, and until recently there was only one medication option for HIV patients.

• The Shocking Truth about Prior Authorization Process in Healthcare (GetReferralMD) Around 66% of prescriptions that get rejected at the pharmacy require prior authorization. When a PA requirement is imposed, only 29% of patients end up with the originally prescribed product—and 40% end up abandoning therapy altogether! Prior authorization is designed to control costs, but in practice it requires a lot of administrative time, phone calls, and recurring paperwork by both pharmacies and doctors. In 2009, one study estimated that on average, prior authorization requests consumed about 20 hours a week per medical practice: one hour of the doctor’s time, nearly six hours of clerical time, plus 13 hours of nurses’ time. No authorization means no payment. PA problems can create a huge interruption for patients, who have to figure out whether the process is stalled out by the doctor, the insurance company, or the pharmacy.
Insurance companies can deny a request for prior authorization for reasons such as:
---The doctor or pharmacist didn’t complete the steps necessary
---Filling in the wrong paperwork or missing information such as service code or date of birth
---The physician’s office neglected to contact the insurance company due to a lack of time
---The pharmacy didn’t bill the insurance company properly
---Outdated information – claims can be denied due to outdated insurance information, such as sending the claim to the wrong insurance company
---The insurer failed to notify the pharmacy
---The approval expired after a limited time (normally 30 days)

 

A different kind of prior authorization:
 • Can health care providers invite or arrange for members of the media, including film crews, to enter treatment areas of their facilities without prior written authorization? (HHS.gov) Answer: Health care providers cannot invite or allow media personnel, including film crews, into treatment or other areas of their facilities where patients’ protected health information (PHI) will be accessible in written, electronic, oral, or other visual or audio form, or otherwise make PHI accessible to the media, without prior written authorization from each individual who is or will be in the area or whose PHI otherwise will be accessible to the media. Only in very limited circumstances, as set forth on this website page, does the HIPAA Privacy Rule permit health care providers to disclose protected health information to members of the media without a prior authorization signed by the individual.

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For your information (and your next argument on the topic):

Meanwhile: Ventilate!

• Worried About Your Gas Stove? Here’s What to Do instead of panicking.

(Rachel Wharton, Wirecutter, NY Times, 1-24-23) You can usually eliminate most of the risks—even if your household includes kids with asthma—by getting more fresh air into your kitchen while you cook.

1) Turn on your range hood every single time you cook.

2) Open a window, add a fan.

3) Use countertop appliances, including a portable induction cooktop (Duxtop 9600LS).

4) Consider an air quality monitor that detects carbon dioxide (SAF Aranet 4 ("reliable CO2 monitoring"). Don't invest in an air purifier (they"aren’t designed to efficiently capture and remove gaseous pollutants like methane or nitrogen dioxide").

5) Consider switching to a radiant-electric or induction stove.
• Gas Stoves Are Tied to Health Concerns. Here’s How to Lower Your Risk. (Dani Blum, NY Times, 1-11-23) Emissions from gas stoves have been connected to an increased risk for childhood asthma, among other things. You can mitigate the effects with a few simple steps.

1) Ventilate, Ventilate, Ventilate!

2) Use the exhaust hood every time you use your stove.

3) Try to use the stove less often.

A study published last year found that families who use gas stoves in homes with poor ventilation, or without range hoods, can blow past the national standard for safe hourly outdoor exposure to nitrogen oxides within just a few minutes; there are no agreed upon standards for nitrogen oxides in indoor air.

• Is the Era of Gas Stoves Burning Out? (Spencer Bokat-Lindell, Opinion, Debatable, NY Times, 1-25-23) The main component of natural gas is methane, which many readers may know primarily as a potent greenhouse gas, responsible for about 30 percent of global warming since the Industrial Revolution. The combustion of methane also produces toxic nitrogen oxides, including nitrogen dioxide. Indoor air pollution is largely unregulated. Since at least the 1970s, researchers have been studying the negative health effects of gas stoves, which are the only major indoor gas appliance that isn’t required to be vented outside.
• The Best Air Purifier (Wirecutter, NY Times, 11-8-22) Their selection: Coway Airmega AP-1512HH(W) Warning: It's big!
• What to Know About the Risks of Gas Stoves and Appliances (Lisa Song, ProPublica, 1-23-22) Homeowners who can afford it should switch to an induction or electric stove. Or you could try an induction hot plate, which costs a lot less. The article also recommends improving ventilation, such as by opening a window, to lower health risks when cooking with gas.
• Gas stoves, freedom, and the politics of distraction (Doug Muder,The Weekly Sift, 1-30-23) Don’t worry about your Social Security, medical care, or bodily autonomy.Instead, focus your attention on gas stoves, light bulbs, X-boxes, M&Ms, and the Democrats’ quest to achieve “Soviet America”. This month’s shiniest object has been: Democrats are coming for your gas stove! Article is about what's really happening.
• Gas stoves became part of the culture war in less than a week. Here's why (Lisa Hagen and Jeff Brady, WBUR, 1-21-23) A growing body of research shows children and others with breathing problems such as asthma can experience short and even long-term health effects from gas cooking stoves. The issue has triggered a debate between people concerned about the health and climate impacts of gas — and those who fear the government is coming for their stoves. The "culture war," according to NPR, is playing out on television and social media.
• How Politics Are Determining What Stove You Use (Brad Plumer and Hiroko Tabuchi, NY Times, 12-16-21) New York is the latest Democratic city aiming to fight climate change by ushering out stoves and furnaces that run on gas in favor of electric alternatives. But Republican states and the gas industry are fighting back.
• Why Are Gas Stoves Under Fire? (Rebecca Leber, Science Friday, 1-20-23)
• 5 myths about gas stoves, the latest culture war clash (Rebecca Lever, Vox, 1-20-23) Myth 1: Biden — or federal regulators — want to take your gas stove away

Myth 2: Gas stove hazards are “newfound”

Myth 3: No type of cooking can compare to the gas stove

Myth 4: Most of America uses gas stoves

Myth 5: As long as you use ventilation, the risks don’t matter
• Gas stoves can harm your health — and scientists have known that for decades (Grid News, 1-17-23) You may need a subscription to read this.
• The New Soldiers in Propane’s Fight Against Climate Action: Television Stars (Hiroko Tabuchi, NY Times, 1-11-23) An industry group is spending millions of dollars to push back against efforts to move heating away from oil and gas.
• Ban Gas Stoves? Just the Idea Gets Some in Washington Boiling. (Elena Shao and Lisa Friedman, NY Times, 1-11-23) The nation’s top consumer watchdog agency raised concerns about indoor air pollution from gas stoves. A political firestorm ensued. A stream of Republican lawmakers attacked Mr. Trumka and the Biden administration on Twitter for even contemplating restrictions on gas stoves.
• Gas stoves and the problematic politics of sacrifice (Kelsey Piper, Vox, 1-25-23)To reach sustainable progress on climate and health issues, we need to focus on what’s easy — not what’s hard.
• Did I Turn Off the Stove? Yes, but Maybe Not the Gas (Raymond Zhong, NY Times, 1-27-22) New research finds that gas stoves emit methane, a potent greenhouse gas, even when turned off and adds to the debate over electrifying homes.
• I Bought a CO2 Monitor, and It Broke Me Katherine J. Wu, The Atlantic, 2-3-23) I thought I could fix the air quality in my apartment. I was wrong.
• N.Y.C.’s Gas Ban Takes Fight Against Climate Change to the Kitchen (Anne Barnard, NY Times, 12-15-21) New York will become the nation’s largest city to enact a ban on gas heat and stoves in new buildings. It’s a major step away from fossil fuels that is expected to influence wider markets.
• U.S. Greenhouse Gas Emissions Bounced Back Sharply in 2021 (Brad Plumer, NYTimes, 1-10-22) Emissions rose 6 percent last year after a record 10 percent decline in 2020, fueled by a rise in coal power and truck traffic as the U.S. economy rebounded from the pandemic.
• Clean Air Act Requirements and History (EPA)
• Why Is Indoor Air Pollution Largely Unregulated? (Christian Roselund, RMI, 5-13-20) RMI is a green energy nonprofit (Decarbonizing Energy Systems) Much of the most serious air pollution that threatens our health comes not from giant power plants or freeways, but from inside our homes.
• Gas Stoves: Health and Air Quality Impacts and Solutions (Brady Seals, Andee Krasner, RMI, 2020) The charts tell a story.

Anything to add?

The following links to devices are adapted from p. 12 chart of Devices for fighting social isolation among older adults (GreatCall) . Clearly this is for seniors in elder-residential facilities, but they might also be helpful for seniors living at home with the family.

If you've had experience with any of these, good or bad, or if there are other devices you recommend, feel free to leave a comment (with a link to a page where the device is shown or described).

• Amazon Echo Show A cloud-based voice hub. Make video calls with a 13 MP camera that uses auto-framing to keep you centered.
• Bose Hearing Aid Self-fitting hearing aids ("hearables")
• Breezie Tablet An open platform that enables senior care providers to deliver care and services through a simple and personalized tablet interface.
• Embodied Labs A modified pair of glasses simulates a senior's impairment so caregivers can imagine the experience. Check out the Immersive Experiences Library Virtual reality for caregiver training.
• Eversound Wireless headphones "give residents the power of sound")
• Google Home Pixel cellphones and more.
• GrandPad An encrypted private network of approved contacts uploaded by a family member. Securely share photos, emails and make video calls without scams.
• ElliQ Companion (Intuition Robotics) A robotic tabletop companion.
• iN2L A touchscreen tablet to facilitate interactions between elder and caregivers and family.
• Jitterbug Phones (GreatCall) An android smartphone with simplified keypads to connect to Call Center.
• JoyforAll Pets Cheery, artfully crafted animatronic birds like Waler Squawker.
• Livio AI (Starkey hearing aids)
• MyndVR Virtual reality headset
• OneClick.Chat Connect on video over computers, tablets, and smartphones
• Oticon In-the-ear hearing aid that learns through experience
• Nuheara Hearing aid integrated with Siri, Google
• Rendever Virtual reality tool helps elders stroll down memory lane. Networked for staff to control, residents to enjoy.

Robots rise to meet the challenge of caring for old people (Nature Outlook, 1-19-22)