Leadership. Commitment. Hype

Today is World AIDS Day. It is, in fact, the 29th annual World AIDS Day, which is held every year on December 1st to honor the 35 million people who have died from the disease and to support the 40 million who currently live with HIV/AIDS. The theme for this year’s event, at least according to the US federal government? “Leadership. Commitment. Impact.” You’ll have to excuse me if I scoff openly at the audacity of that motto.

Let’s consider the leadership and commitment of our politicians in fighting HIV/AIDS. When AIDS was first identified in 1981, it was seen as a disease that primarily affected socially marginalized populations, notably gay men, injection drug users and immigrants from poor Caribbean countries like Haiti. As long as it was confined to those ‘undesirable’ groups, there was no need for upstanding American citizens to pay it much heed. Following the lead of then-President Ronald Reagan – who didn’t even mention the word ‘AIDS’ publicly until 1985, and then only sparingly — politicians and other members of his conservative administration largely ignored the looming public health crisis.

American leadership failed when it was needed the most, by refusing to tackle the nascent AIDS crisis with measures like comprehensive education, blunt messaging and active promotion and widespread distribution of condoms. Had federal officials not been so afraid of ruffling conservative feathers, it is entirely possible that the HIV/AIDS epidemic might have be thwarted then and there.

This isn’t to say that there haven’t been a few times when our political leaders actually stepped up to the plate and contributed to the fight against HIV/AIDS. In 1988, despite opposition by the more conservative members of the Reagan Administration, then-Surgeon General Dr. C. Everett Koop mailed detailed information to every American household on the use of condoms to prevent the spread of HIV.

Similarly, in response to public pressure from celebrity advocates and radical activist groups, Reagan dramatically increased funding for AIDS research and established what would eventually be the first permanent advisory council on HIV/AIDS. Subsequent Administrations have increased funding and support for treatment and prevention efforts even more, including the establishment of the President’s Emergency Plan for AIDS Relief (PEPFAR), a global initiative spearheaded by George W. Bush that provides lifesaving antiretroviral treatment to millions of people living with HIV/AIDS in the hardest hit countries around the world.

That being said, political leaders at both the state and the federal level are more likely to stymie that promote efforts to prevent the spread of HIV/AIDS, most often for ideological reasons. Despite decades of research demonstrating that needle exchange programs greatly reduced rates of HIV transmission among injection drug users, for example, the use of federal funds to support these programs was largely banned until 2015. Opposition to federal support of needle exchange programs was largely based on the erroneous fear that they actively promote drug use among clients, in spite of evidence to the contrary. This decades-long ban likely lead to the otherwise preventable infection of thousands of drug users and their partners.

Under the leadership of Vice President-elect Mike Pence, Indiana legislators eliminated all state funding for Planned Parenthood because of their ideological opposition to abortion. As many who have been following the political wrangling over Planned Parenthood know, however, legal termination of pregnancy accounts to less than 3% of the total number of medical procedures and services offered by that organization. Rather than a place to get abortions, for many poor Americans Planned Parenthood is the only source for a variety of desperately needed health care services, including: family planning; pregnancy testing and prenatal care; screening for breast, cervical and testicular cancer; testing and treatment for sexually-transmitted diseases; and HIV testing and education. When Pence and his colleagues cut funding for Planned Parenthood in Indiana, five clinics were shuttered. This included one clinic that was the sole provider of HIV counseling and testing in Scott County. Soon after, that rural community saw a 16-fold increase in the number of new HIV infections.

Similar increases in the spread of HIV are likely to be seen nationally should newly emboldened conservative politicians make good on many of their campaign promises. During the recent campaign, now President-elect Donald Trump called for the complete elimination of all public funding for organizations like Planned Parenthood. Congressman Tom Price, Trump’s nominee for Secretary of Health and Human Services, is an ardent pro-life advocate who has championed those efforts. Representative Price has also called for a rollback of Medicaid, including slashing funding of programs that provide HIV-positive patients with low-cost access to care and treatment, and is a strong supporter of faith-based abstinence-only education programs that are widely known to be ineffective in educating teens and young adults about HIV/AIDS.

Support for HIV prevention and treatment efforts has been slipping for years, in part because of public fatigue and in part because of hype that new drug regimes have turned HIV/AIDS from a once deadly disease to a chronic condition that can be managed like diabetes or heart disease. AIDS is no longer seen as a serious public health crisis, explaining why both private and pubic funding for HIV/AIDS programs has been stagnant for almost a decade.

This problem is only going to get worse in the coming years, if the current political climate is any indication of where American priorities lie. Unless our newly-elected politicians show true leadership and commitment to the fight against HIV/AIDS – instead of their usual self-serving and ideologically-motivated efforts to promote themselves and enrich their donors — I fear that the hard-won gains that we have made since HIV was first discovered will soon be lost.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on December 1, 2016, and is available on the WAMC website.]

Posted in disadvantaged, Discrimination, HIV/AIDS, Policy, Politics, Uncategorized | Leave a comment

Under the Knife

I nearly died last month. This is not an exaggeration. What started out as a bad bout of influenza quickly developed into something more. After five days sick in bed, I was struck with stabbing abdominal pains, a fever that spiked over 105° F, and a severe case of sepsis. Had I not gotten myself to the emergency room, I might have ended up in a coma, or worse, as a result of the raging infection coursing through my blood stream.

I spent a total of 16 days in the hospital, including an overnight stay in the intensive care unit (ICU), as a team of doctors and specialists furiously tried to bring my infection under control. I’m now convalescing at home, 23 pounds lighter and with 6 holes in my chest and abdomen.

For someone who considers himself to be healthier than most men his age, this was a terrifying experience. For a bioethicist who reads, writes and teaches about clinical care, this was also a very humbling experience. Other than a couple of out-patient procedures to fix orthopedic problems, this was the first (and longest) time I have ever spent being treated for a severe medical issue. I learned a lot about what it means to be a patient, lessons that will undoubtedly influence my own research and writing about modern medical policies and practices. In particular, there are five lessons that I want to share.

Lesson 1: Modern medicine is an inexact science. Over the course of eight days I underwent eight X-rays, three ultrasounds, two CT, two hepatobiliary (HIDA) scans, an MRI, and a sigmoidoscopy. I also had dozens of blood tests. These test results were inconclusive and confusing, leading one surgical resident to admit to me that clinicians often just make their best guess as to what’s wrong, treating the symptoms and letting the body heal itself. In my case, it was only after they opened me up in the operating room that the doctors realized that I had peritonitis, peri-appendicitis, and several perforations of my small and large intestine. They still don’t know the cause of my illness.

Lesson 2: Modern medicine is very expensive. I have already received eight bills for my care, totaling nearly $30,000. Still looming are the charges for the operation, all of the medical tests, and the night in the ICU. My total bill is likely to be over $100,000. Thankfully, I have medical insurance and my total out-of-pocket costs are capped at $3,500, an amount I can afford. By contrast, there are many who live paycheck to paycheck for whom even a few thousand dollars would be a financial hardship, and that doesn’t include the 10% of Americans who are uninsured and would likely driven into bankruptcy if they had to deal with a $100,000 hospital bill.

Lesson 3: The looming “superbug” crisis is even more frightening than I thought. I have written in the past about one of the most deadly threats to human health since the bubonic plague: the coming epidemic of antibiotic-resistant bacteria. I’m even more worried now. It took the doctors 16 days, infusing me intravenously with some of the strongest antibiotics known, to bring my infection under control. As soon as bacteria resistant to those drugs emerge – a question of when rather than if – there will be nothing available to treat such severe infections in patients like myself. Unless we address this problem head on, in the coming years millions of patients will die as a result of untreatable infections.

Lesson 4: Nurses and medical technicians are the under-appreciated heroes of modern medical practice. This is not to say that the doctors didn’t give me great care, but during my 16 days in the hospital I rarely saw them. They would pop into my room at random hours, check my vitals and palpate my abdomen, and then go out into the hall to issue new orders to the nursing staff. The nurses and medical technicians on the ward were the ones that provided the front line care that I needed. They treated my pain, drew my blood, gave me antibiotic infusions, managed my fever, bathed me, took me to the bathroom, sat with me, and provided me an unlimited supply of cold ginger ale to soothe my parched throat. They did so for me and all the other patients on the ward unflinchingly, despite the fact that many patients and family members (not me) often take out their anger, fear and pain by yelling at the nursing staff.

Lesson 5: Never underestimate the importance of friends and family in the treatment and recovery process. In some ways this is the most important lesson I learned. When I was at my lowest point – my abdomen distended, my legs swollen from the 15 liters of IV fluid pumped into me, and my pain controlled only by frequent injections of morphine – it was the visits from my friends and family that gave me the strength to soldier on. They didn’t need to talk (sometimes they didn’t, as I often was barely lucid from the painkillers). Rather, they sat with me and held my hand. Without them, particularly my husband, I’m not sure I would have survived. Remember that next time a friend, family member or even a distant acquaintance is in the hospital. Make sure you visit them, even if it is only for a few minutes. Your presence is the most powerful medicine there is.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on November 3, 2016, and is available on the WAMC website.]

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The Age of the Superbug

With all of the media hullaballoo about Hillary Clinton’s pneumonia, Donald Trump’s physical exam, Brangelina’s impeding divorce, and poisoned Skittles, you may have missed one of the biggest and most important health stories of this year.

Just yesterday, the United Nations General Assembly held a day-long meeting in New York City to discuss one of the most deadly threats to human health since the bubonic plague: antibiotic-resistant bacteria. This is only the fourth time in history that the General Assembly has met to address a health issue, having met twice in 2011 to talk about HIV/AIDS and chronic diseases, respectively, and again in 2014 to discuss the West African Ebola outbreak.

Antibiotic-resistant bacteria pose an even greater threat than Ebola, HIV/AIDS, and heart disease combined. According to the US Centers for Disease Control and Prevention (CDC), antibiotic-resistant forms of common bacteria like E. coli, Staphylococcus aureus, Streptococcus pneumoniae, and Mycobacterium tuberculosis – among others – infect nearly 2 million people a year in the United States, killing at least 25,000.

Worldwide, the number of people infected is several magnitudes greater; an estimated 750,000 people died from antibiotic-resistant infections in 2015. Within just a couple of decades, that number is expected to increase by nearly 1500%, yielding over 10 million “superbug”-related deaths annually by 2050.

Antibiotic-resistant infections will soon account for one-third of all deaths globally, a startling turnabout from 1967. That year, thanks to the widespread use of antibiotics and still effective public immunization programs, then Surgeon General William Stewart famously stated that, “the time has come to close the book on infectious diseases. We have basically wiped out infection in the United States.”

However, it turns out that it was the very successes that Dr. Stewart was touting –including copious use of antibiotics – that resulted in the grave crisis that we face today. It was the overprescribing and misuse of antibiotics over the past 50 years that allowed these superbugs to emerge.

Commonly used antibiotics like amoxicillin, cephalexin, azithromycin and ciprofloxacin still kill most bacteria, but a small percentage of these microorganisms are naturally resistant. Naturally occurring resistance has been seen for every antibiotic that has ever been developed. Thus, whenever an antibiotic is used, the drug-sensitive bacteria die off but the resistant bacteria survive. Eventually, if a particular antibiotic is used enough, the resistant bacteria take over. This is why antibiotics should only be used sparingly.

Unfortunately, we haven’t been so thoughtful in our use of these drugs. Ever since the first antibiotics were prescribed to treat serious infections among the soldiers fighting in World War II, we have used them more and more liberally.

It is not uncommon, for example, for a physician to prescribe an antibiotic like azithromycin to a patient with the flu, even though these drugs do not work on viruses like influenza. They may do so because they are hurried, because they misdiagnosis the illness, because they want to prevent potential secondary infections, or (most likely) because their patients expect them to.

We also use antibiotics for non-medical purposes. Nearly 80% of the antibiotics produced annually in the US are not used to treat infections, but instead are used by farmers as growth promoters. Antibiotics are routinely added to the feed or water of agricultural livestock – cattle, pigs and poultry – in order to make these animals fatter.

Given the high-dosages used, many of these drugs pass through the digestive system un-metabolized and are thus present in animal waste. This waste eventually enters the ecosystem through agricultural run-off or sewage spills, contaminating the ground, local streams and rivers, and underground aquifers. In agriculturally intensive regions of the world, pharmaceutically active concentrations of antibiotics are routinely found in soil and water samples. One study of the Yangtze and Pearl Rivers in China, for example, detected more than 60 different antibiotics in those waterways, often at levels that were 10,000 times greater than the normal human treatment dose.

As a result, the world is quickly running out of effective antibiotics. Despite this, there are few new antibiotic drugs in development. This is not because the need isn’t there, but it is simply too expensive and too difficult for pharmaceutical researchers and drug manufacturers to develop, test and market new antibiotics when the bacteria adapt so quickly.

Unless we change our current practices, we will soon be entering a post-antibiotic era. We need to stop prescribing antibiotics for every little cold. We need to stop using these drugs to satisfy our desire for cheap meat, milk and eggs. We need a global effort to develop new drugs and treatments for the myriad of drug-resistant bugs we already face. And we need to do it before it is too late.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on September 22, 2016, and is available on the WAMC website.]

Posted in Clinical Care, Disasters, Drugs | Leave a comment

How to Die in California

Late last month, Betsy Davis died at her home in Ojai, California. The 41-year-old performance artist was suffering from ALS, a progressive neurodegenerative disorder, also known as Lou Gehrig’s disease, which had already robbed her of the ability to stand, to walk, and to speak clearly. Facing the prospect of a slow and lingering death as she lost her capacity to move, to eat and, eventually, to breathe, Ms. Davis took her own life by taking a lethal dose of barbiturates.

In doing so, Betsy Davis became the first terminally ill patient to die under California’s End of Life Options Act. That law, which went into effect in June of this year, allows a terminally ill resident of California to be prescribed a lethal dose of drugs so long as they meet certain medical criteria, make two oral and one written request for physician aid-in-dying, and have the ability to take the drugs without assistance.

In passing the End of Life Options Act, California became the fifth state to legalize physician aid-in-dying. Oregon was the first state to legalize the practice by popular referendum, implementing it in 1998. Washington and Vermont followed suit in 2008 and 2013, respectively. Montana is the only other state where the practice is allowed, the result of a Montana Supreme Court ruling that nothing in that state’s laws prevents the practice.

California’s Act was passed largely thanks to the efforts of two advocacy groups. The first is Compassion and Choices, a national organization that has been working to expand end-of-life treatment options (including physician aid-in-dying) for the past 30 years. The other organization involved, and the one that has been the most instrumental in changing public opinion about physician aid-in-dying, was the Brittany Maynard Fund.

The Fund was established in 2014 following the death of Brittany Maynard. Earlier that year, the then 29-year-old Californian was diagnosed with astrocytoma, a rare and aggressive form of brain cancer. Despite treatment, which included a partial craniotomy and the removal of part of her temporal lobe, Brittany’s cancer continued to progress and she was given a terminal diagnosis.

Facing a brief future filled with pain as she slowly lost her memory, her vision, and her ability to walk and to speak, Brittany sought to end her life on her own terms. Unfortunately, at that time physician aid-in-dying was not available in her home state of California. In response, she and her husband left their family, friends and home behind and moved to the neighboring state of Oregon. It was there, on November 1, 2014, that Ms. Maynard ended her life peacefully by taking a lethal overdose of drugs that was prescribed to her under that state’s Death with Dignity Act.

In going public with her story, Ms. Maynard became one of the most visible faces of the right-to-die movement. A young, beautiful and talented woman, she presented to the public an image that was very different from what most pictured when thinking of the terminally ill: she wasn’t old, she wasn’t depressed or suicidal, and she wrote and spoke bluntly but eloquently about her terminal diagnosis and her desire to die on her own terms and in her own way. She also had the support of her husband of three years, Dan Diaz, who founded the Brittany Maynard Fund in honor of her memory.

In one of those rare coincidences, earlier this month I had the good fortune to meet Dan Diaz. Purely by chance, my husband and I happened to be dining in a bar-restaurant in New York City’s Little Italy when Mr. Diaz sat on the stool next to us. He was in town briefly as part of his unceasing efforts to lobby for expanded end-of-life options in New York and the other 44 states where physician aid-in-dying is still illegal.

Over the next two hours, we talked openly and honestly about Brittany, her experience, the arguments for and against aid-in-dying, and whether or not New Yorkers would be open to making the practice legal in this state.

Neither he nor I know the answer to that last question. The arguments for legalizing physician aid-in-dying are compelling, but so too are many of the concerns raised by critics. For example, physicians opposed to the practice believe that hastening death run counter to the moral duties outlined in the 2500-year-old Hippocratic Oath. Others fear that terminally ill patients will be pushed into ending their lives because of the emotional and financial burden placed upon their loved ones. Disability rights advocates worry that legalizing physician aid-in-dying devalues the lives of those living with physical or mental limitations, and point to the recent legalization of euthanasia for severely disabled children in the Netherlands as proof that we are but one step away from legitimizing their murder.

These are all valid concerns, and ones that need to be respected and addressed as we begin to debate the issue of physician aid-in-dying more and more publicly. Moreover, we need to bluntly discuss the issue of death itself, by talking with our friends, families and physicians about what a ‘good death’ means for each of us, by planning for the inevitable with our loved ones and our lawyers, and by exploring and expanding alternative end-of-life treatment options like hospice and palliative care. That is the true legacy of women like Brittany and Betsy: not the hastening of death but the celebration of life, no matter how short.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on August 25, 2016, and is available on the WAMC website.]

Posted in Cancer, Celebrities, Disability, End-of-Life, Physician Aid-in-Dying, Policy, Uncategorized | Leave a comment

Blame It On Russia … and Rio

Tomorrow marks the mid-point of the 2016 Summer Olympic Games in Rio de Janiero, Brazil. Despite my concerns about the threat posed by the Zika virus – shared by a significant majority of scientists, infectious disease physicians and public health experts but largely ignored by the World Health Organization and the International Olympic Committee (IOC) – the Games have gone on as scheduled. Whether or not that is a blunder of epidemic proportions remains to be seen, but in the meantime I’ve been enjoying the international spectacle that is the Olympics.

In addition to enjoying the athletic competition, I’ve been following the other various dramas, scandals and controversies surrounding the Games closely. This includes the acrimonious rivalries between different athletes and different countries (sometimes descending into less-than subtle threats of physical harm on social media), the rampant sexism of sports journalists and correspondents, and the public protests by Rio’s citizens over bribery, crime, corruption and waste. But what is most interesting to me personally is the controversy surrounding the presence (and exclusion) of Russian athletes at this year’s Games.

Late last month, despite evidence of an extensive state-sanctioned doping program, the IOC decided against imposing a blanket ban on Russian athletes in Rio. Rather, over the complaints of organizations like the World Anti-Doping Federation and the Institute of National Anti-Doping Organizations, the IOC shifted that burden to the 28 individual sports federations that make up the summer Olympics. A mere twelve days before the official start of the Rio Games, those ill-equipped and over-burdened federations were asked to take on the complicated task of scrutinizing the individual anti-doping histories of nearly 400 Russian athletes.

A few federations, like the International Association of Athletics Federations, cleared only a handful to compete; of 62 Russian track and field competitors, only two were cleared (including Yuliya Stepanova, a middle-distance runner who blew the whistle on Russia’s doping program after she herself was caught using performance-enhancing drugs). By contrast, the Fédération Internationale de Natation, which oversees all aquatic competitions, cleared over 60 Russian athletes and banned but a few. All told, over 70 percent of Russia’s Olympic team was belatedly and hastily cleared for competition.

That some athletes will resort to using performance-enhancing drugs to gain an edge over their rivals is nothing new. Athletes competing in the original Olympic Games in Ancient Greece would use so-called ‘magic’ potions in order to improve their performance. As far back as then, the practice was prohibited and those caught cheating were banned and publicly shamed. However, it was only after the death of Danish cyclist Knud Jensen at the 1960 Summer Games in Rome that a concerted effort to ban the use of performance-enhancing drugs in international sport began. Mr. Jensen died as a result of injuries sustained in a crash, and the autopsy revealed that he was under the influence of amphetamine at the time of the accident. In response, the IOC banned the use of performance-enhancing drugs in 1967.

Testing of Olympic athletes for drugs began the following year at the 1968 Mexico City Games, with Swedish pentathlete Hans-Gunnar Liljenwall being the first to test positive for a then banned substance (alcohol). Since then, over 200 Olympic athletes have tested positive for otherwise prohibited drugs. The actual number of competitors using performance-enhancing drugs is likely much higher, calling into question the integrity and credibility of Olympic competition and even the Games themselves.

As I’ve written about before, organizations like the World Anti-Doping Agency face a daunting and thankless task. While random drug tests can (and are) be used to test athletes for the use of performance-enhancing drugs, such tests are usually performed on the day of competition. But most performance-enhancing drugs are used only during training, leaving plenty of time for the drugs to wash out and become undetectable. More frequent out-of-competition testing could combat this, an approach that is very expensive and time-consuming.

Similarly, many athletes use novel drugs for which anti-doping tests do not yet exist. The only way to combat this is to store and reanalyze samples as new drug tests become available. But this does little to combat the problem in real time, and the legality of stripping someone of a title when they test positive for a drug that wasn’t on the list of prohibited substances at the time of competition is questionable. For example, Russian tennis star Maria Sharapova recently received a two-year ban after testing positive for the drug meldonium. While she’d been using that performance-enhancing drug for over ten years, its use was only banned by the World Anti-Doping Agency at the end of 2015. She has not been stripped of her previous titles, and corporate sponsors like Nike have yet to drop her.

Finally, as the still unfolding Russian scandal suggests, poorly funded and over extended anti-doping agencies are competing with state-sanctioned doping programs. Of the 33 Olympic medals won by Russia at the 2014 Winter Games in Sochi, over a third were awarded to individuals whose names appear on lists maintained by that government’s clandestine doping program. None of these athletes tested positive for banned substances during the Games, demonstrating just how effective Russia’s doping program is. Other countries likely have similar programs, including competitive powerhouses like China (if the claims of dissent Chinese athletes are to be believed).

Don’t get me wrong: most of the athletes at the Rio Games are honest. For every one using performance-enhancing drugs, there are hundreds more who are clean. This includes many of the Russians who are competing under a cloud. Moreover, I don’t blame the athletes who were caught up in that country’s systematic doping program; it is hard to refuse to participate in a program that is run by a non-democratic, authoritarian government like Putin’s.

Rather, I blame the IOC for failing to take a strong if controversial stance against doping by banning the entire Russian team. I also blame a culture of competition that emphasizes winning at all costs rather than celebrating the more important cultural and communal values promoted by sports. Until we stop treating winning athletes as commodities, lauding and rewarding the success of gold medal winners like Michael Phelps while ignoring the tenacity and spirit of those he outswam, we will never truly solve the doping problem.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on August 11, 2016, and is available on the WAMC website.]

Posted in Athletics, Celebrities, Drugs, Enhancement, Media, Politics, Uncategorized | Leave a comment

The Invisible Woman

As I watched the opening days of the Democratic National Convention in Philadelphia, I was struck by the stark contrast in tone between it and last week’s Republican National Convention in Cleveland.

Despite the sometimes-acrimonious conflict between Clinton’s delegates and Sander’s supporters, a sign of vibrant and democratic debate regardless of what the various pundits might suggest, there was still strong evidence of unity among the Democrats of all levels. You only need contrast, for example, the unequivocal endorsement of Hillary Clinton by Bernie Sanders and his various lieutenants with the openly contemptuous speech of Republican also-ran Ted Cruz to see the difference.

Of course, just like the Republican Convention, many of the speeches were full of hyperbole, half-truths, or outright distortions. One need only read the analyses of independent organizations like Politifact to see that. Nevertheless, the opening night of the convention made for good entertainment.

The star power on display the first night of the convention was also impressive, with powerhouse progressives like Cory Booker and Elizabeth Warren giving rousing speeches that outlined the Democratic Platform and its policy goals while condemning the fear-mongering and divisiveness of the Trump campaign.

However, while many in the media swooned over the powerful and positive message given by First Lady Michelle Obama, there was one speech in particular that stood out to me: the speech given by disability rights advocate Anastasia Somoza.

Diagnosed with cerebral palsy and spastic quadriplegia at birth, Ms. Somoza first rose to national prominence in 1993 when, at the age of nine, she appeared on television with then-President Bill Clinton to call for integration of children with disabilities into general education classrooms. As a result of her advocacy and President Clinton’s intervention, Anastasia and her twin sister Alba (who suffers from the same condition) were the first significantly disabled students to be enrolled in a mainstream New York City public school.

Since then, Ms. Somoza has graduated with degrees from such top universities as Georgetown and the London School of Economics, taken a position with Shield Institute (an organization that supports those with intellectual and developmental disabilities to live independently), and worked with the Clinton Foundation on efforts to provide parents in low- and middle-income countries with the education and resources they need to care for disabled children.

Although she was speaking on the 26th anniversary of Americans with Disabilities Act, the landmark civil rights law that prohibits public discrimination against anyone with a physical or mental disability, Anastasia described some of the challenges of living, “in a country where 56 million Americans with disabilities so often feel invisible.”

I’m not sure whether or not Ms. Somoza’s complaint was a direct allusion to Ralph Ellison’s Invisible Man, the mid-century novel about race whose protagonist is similarly invisible because of the refusal of others to see him, but the social invisibility of which she speaks is but one example of the overt and covert discrimination which those with disabilities experience every day.

Ask any of your friends or colleagues living with a disability and they will undoubtedly tell you of illegally occupied handicapped parking spaces, quotas on the number of wheelchairs allowed onto buses, airplanes or concert venues, and the quickly averted gaze of store clerks or taxi cab drivers who do not know how to deal with those with special needs. Businesses often refuse to hire the disabled for similar reasons. Nearly 80% of those living with disabilities do not participate in the workforce. When they do, they face a wage gap that exceeds that faced by women or ethnic minorities.

Many well-intentioned able-bodied individuals are often guilty of this social blindness, be it the result of misguided respect, embarrassment, repugnance or fear. Others are outwardly dismissive or hostile towards those with disabilities, including GOP Presidential Candidate Donald Trump, who openly mocked a disabled New York Times reporter at a campaign rally last November. Mr. Trump has yet to apologize for his infantile mockery, and few in the Republican Party have taken him to task for this behavior (including former Alaska Governor Sarah Palin, who is herself the mother of a disabled son and who has publicly admonished political opponents for similar insults in the past).

When we allow people to get away with things like this – by looking the other way when they make fun of someone’s disability, by failing to speak up when someone uses a racial epithet or calls someone a queer or a faggot – we are equally guilty in creating a social climate that values the lives of some people more than it values the lives of others. And we’ve already seen through millennia of history what that can lead to.

And for those of you who do not think that atrocities like the Holocaust, the Armenian and Rwandan genocide, or the Cherokee Trail of Tears can happen again, you need only open today’s newspaper. The very morning after Ms. Somoza spoke on the floor of the Democratic National Convention, 19 people at a facility for the disabled in Japan were stabbed to death by a man who claimed that, “I envision a world where a person with multiple disabilities can be euthanized … I believe there is still no answer about the way of life for individuals with multiple disabilities. The disabled can only create misery.”

Treating those living with disabilities respectfully isn’t about political correctness, it’s about human decency. It’s about publicly recognizing the dignity of everyone and the value of each and every life, and celebrating the tenacity and courage of women and men like Ms. Somoza. There is no shame in being disabled … the shame lies only with those who fail to recognize that.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on July 26, 2016, and is available on the WAMC website.]

Posted in Disability, Discrimination, Media, Policy, Politics, Uncategorized | Leave a comment

Welcome to Cleveland. Please Set Your Watch Back 100 Years.

As anyone who listens to my commentaries or reads some of my opinion pieces likely suspects, I tend to fall on the liberal side of the political spectrum. That said, next week I will definitely be watching the political three-ring circus that is the Republican National Convention.

This election cycle has been one for the history books, with the Grand Old Party of Lincoln, Eisenhower and Reagan bucking tradition and defying expectations by selecting opinionated billionaire Donald Trump as the presumptive nominee. More importantly, the 112 members of the Republican National Committee Platform Committee have drafted a staunchly conservative political platform that outlines their vision for America. This platform will now be presented to the delegates of the Republican National Convention for approval on Monday.

That the platform itself is politically conservative should come as no surprise, particularly as the Republican Party has become increasingly beholden to right-wing ideologues and organizations like the Tea Party, the Family Research Council, and the National Rifle Association. I expect the Democratic Party Platform to be equally progressive, particularly as the Clinton campaign struggles to recruit the disaffected supporters of Bernie Sanders.

What’s surprising about the GOP’s 2016 platform is this: it is an ultra-reactionary platform that runs counter to a century of progress in civil rights, ignores some of the basic premises of our Nation’s founding and previous Republican philosophies, and outwardly ignores conclusive data on public health and climate change.

Consider, for example, the numerous and tone-deaf provisions that target the LGBT community. Coming exactly one month after a single gunman killed 49 people at a gay club in Orlando, and despite claims by the Platform Committee that it didn’t not want to engage in “identity politics”, social conservatives who were still bristling over Supreme Court rulings like United States v. Windsor and Obergefell v. Hodges were able to include a number of discriminatory provisions in the platform documents.

Included among these discriminatory provisions was a reaffirmation of marriage as the legal union of one man and one woman, a call for a Constitutional Amendment to ban same-sex marriage, a requirement that transgendered individuals use the bathroom or changing room that aligns with the sex on their birth certificates, and support for state- and federal-level legislation that would allow any person or company to legally discriminate against the LGBT community on the basis of religious freedom.

Worse yet, the GOP Platform also expresses support for so-called “conversion” or “reparative” therapy, psychiatric treatment that aims to change an individual’s sexual orientation. In pushing that political plank, the members of the Platform Committee – which includes the head of an anti-gay organization described by the Southern Poverty Law Center as an official hate group – ignored decades of medical research. In 2009, for example, the American Psychological Association engaged in a comprehensive review of all of the then-available research on reparative therapy. They reviewed all studies on gay conversion therapy conducted between 1963 and 2007, and concluded that a person’s sexual orientation could not be changed with therapy. That review also found that individuals who underwent reparative therapy were likely to have higher rates of anxiety, depression and suicide than other members of the LGBT community.

So compelling are these data that the American Psychological Association, the American Psychiatric Association, the American Counseling Association, the American Academy of Pediatrics, and the National Association of Social Workers have all condemned reparative therapy. The American Psychiatric Association goes even further, calling the practice unethical and stating that, “the potential risks of reparative therapy are great, including depression, anxiety and self destructive behavior, since therapist alignment with societal prejudices against homosexuality may reinforce self hatred already experienced by the patient.” Five states have also banned the practice. It should not be surprising then that the even the Log Cabin Republicans – a group of LGBT conservatives that frequently ignore the anti-gay rhetoric of their own party – have spoken out against the platform, calling it “the most anti-LGBT Platform in the Party’s 162-year history.”

Lest you think the GOP’s 2016 platform only targets the LGBT community, however, consider these other planks. Ignoring the spate of gun violence, particularly crimes committed using legally obtained semi-automatic weapons, the Platform Committee passed an amendment opposing any law that would restrict magazine capacity. The traditional anti-abortion language was also strengthened to exclude abortion even when the pregnancy is the result of rape, incest or threatens the health of the mother. Contrary to the opinion of most military experts, and the experience of the Israeli Defense Force, the members of the Platform Committee continue to oppose women occupying combat positions in the US military. Finally, and in direct contravention of the Establishment and Free Exercise Clauses of the First Amendment, the GOP platform demands that lawmakers use religion as a guide when legislating by stating that, “man-made law must be consistent with God-given, natural rights.”

Despite dubious claims by Donald Trump and his supporters that he would be better for women, for minorities and for the LGBT community than Democratic-nominee Hillary Clinton, this platform (which the Trump campaign has already endorsed) seeks to overturn the hard won civil rights of all Americans. For a party that condemns so-called ‘identity politics’ and claims to offer a ‘big tent’ that welcomes all people regardless of race, ethnicity, gender, religion, sexual orientation, or political views, the proposed 2016 platform suggests the exact opposite.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on July 14, 2016, and is available on the WAMC website.]

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