[Here is the text of Mark’s remarks for Pride 2007]
About once a year as I’m hurrying along on the sidewalk in mid-town Manhattan, someone comes up to me on the street and asks if I’m Jewish.
Well, my father was a British Atheist and in the 1930s a Communist from a rather well known Sephardic Jewish family – that’s the “de Solla Price” part of my family name. My mother was a Danish Atheist and Communist from the same era who was Christened in the Lutheran Church, but had almost no other church attendance since.
For my parents religion, like nationalism, was something that separated people into groups of “us” and “them” and caused hostility and intolerance.
As a child, I was a devote Atheist, being quite vocal in my silence during anything god-related in public school or boy scouts. As a very little child, I would sit defiantly as my classmates stood and recited the Pledge of Allegiance. My mom found it chillingly close to the forced Nazi pageantry of her school years in occupied Copenhagen during the war.
My parents would read to me fairytales by Hans Christian Andersen, stories from One Thousand and One Arabian Nights, Classic Myths from the Greeks, Romans, and Vikings. All sorts of folklore and legends, from all over the world. There were tales of King Arthur and King Solomon and Martin Luther King, Jr. with illustrated histories and biographies.
As a family, we celebrated Halloween, Thanksgiving, Christmas, Passover and July 4th with equal secular enthusiasm with feigned an ignorance that others might attribute some religious meaning to any of these.
As a teenager at The Choate School, where I lived during my high school years, I learned that I was considered to be Jewish regardless of my views on religion. And the rebel in me was quite proud of that badge of honor. In my junior year, it even had the fringe benefit of my being invited to dinner with Golda Meir at the Waldorf-Astoria Hotel.
As an adult I found my own spirituality as a mix of Quaker, Taoist, Native American, Jewish, Universalist and Humanist. Today, I think of myself as a humanist Unitarian Universalist and pretty non-thetics. I’ve been a member of Community Church of New York Unitarian Universalist since 2003.
Although the Unitarian Universalist movement branched off from liberal Christianity, a recent study found that today most members identify themselves as Humanist (54%), followed by Agnostic (33%), Earth-centered (31%), Atheist (18%), Buddhist (16.5%), with Christian (13.1%) and Pagan (13.1%) being tied for smallest segment.
Naturally, all that’s too much to say when asked on the street corner, so at first I said “why yes, I am Jewish”
And that lead to my being hustled off the street corner into a nearby waiting van. No, this wasn’t some anti-Semitic hate crime. The “Mitzvah Van” (the Hebrew word for “Good Deed”) was there so I could be “helped” by an ultra-Orthodox Lubavitch Hasidic Jew to and have “the word of the lord” – as in Tefillin or little leather boxes with excerpts from Deuteronomy – tied onto my hand, and head and being coached to repeat a phonetic Hebrew so I could perform my morning prayers. Not my idea of them doing me a good deed.
After that experience, I now answer “No, I’m not a religious Jew.” But of course, my Jewish family heritage is very important to me, and I treasure a whole host of traditions, stories and heirlooms.
Today, being “Pride Sunday” got me asking, like the quintessential Broadway musical A Chorus Line, “Who am I anyway?” What am I proud of?
Well, that’s not easy to answer. Politics is something that defines me and I’m proud of.
Senator Barack Obama wrote in his 2006 book, “The Audacity of Hope”:
I am a Democrat, after all; my views on most topics correspond more closely to the editorial pages of the New York Times than those of the Wall Street Journal. I am angry about policies that consistently favor the wealthy and powerful over average Americans, and insist that government has an important role in opening up opportunity to all. I believe in evolution, scientific inquiry, and global warming; I believe in free speech, whether politically correct or politically incorrect, and I am suspicious of using government to impose anybody’s religious beliefs – including my own – on nonbelievers. Furthermore, I am a prisoner of my own biography: I can’t help but view the American experience through the lens of a black man of mixed heritage, forever mindful of how generations of people who looked like me were subjugated and stigmatized, and the subtle and not so subtle ways that race and class continue to shape our lives.”
Okay, from that I think I’m clearly a Democrat too, although I have crossed party lines for particular candidates and issues in the past, but luckily my mother never found out.
From my work with HIV/AIDS, I know that there are lots of MEN who like to have sex with other men, but consider themselves heterosexuals, not even bi-sexual. We know that Abraham Lincoln (1809 –1865), Eleanor Roosevelt (1884 –1962) and George Washington Carver (1864 -1943) all had multi-year, live-in same sex lovers, but none of them would consider themselves to be gay.
It's kind of like "being a vegetarian" which to some folks means only eating plant-based foods, to others it includes fish and eggs, and other it's that they don't eat red meat except when they do.
That duality must add lots of stress to live. Vinny, you don’t have to worry; this has never been a borderline issue for me. Clearly, I’m 100% gay male.
What else defines who I am as a person?
I’m also the author of a book, a magazine and blog writer, subject of various newspaper, magazine, TV stories and even an HBO documentary. I’m political and civil rights activist, never missed voting, even in the local elections and a second-generation life-long ACLU member,. I’m married to a same-sex husband, I’m a person who lived with HIV since 1983 now living with AIDS, I’m the long-time caregiver of a chronically ill spouse; we live with Troika, a Doberman-mix dog rescued from hurricane Rita and from Texas. (making our adopting her a double Mitzvah)
For thirty years, I was a technology consultant, but for the last six months, I’ve been out on disability while I my body and mind undergoes some pretty brutal weekly anti-hepatitis C treatments, so I can’t really claim any business card title right now, which feels odd. Although I still am an avid reader and a Macintosh and TiVo user.
Ethnically and culturally, I’m Danish, English, and Jewish; Vinny’s culturally Italian and toughly recovered from being raised Catholic.
Well that was a pretty long list of important parts of who I am. But today is the Gay Pride parade, so let me talk about that part for a bit, and then get back to those other things.
Thirty-eight years ago, on June 27, 1969 a bunch of local fags, dykes and drag queens hanging out at Stonewall Inn, the local gay bar on Christopher Street at Seven Avenue, got feed up of being shaken down by the routine corrupt cops. The ensuing riot lasted for days. In hindsight, it is often used to mark the start of the modern Gay, Lesbian, Bi- and Transgender Civil Rights movement here in America.
My friend Dennis Daniel from POZ Magazine, did a little research on the original news coverage of those riots:
The New York Post ran the simple headline "Village Raid Stirs Melee"
The New York Times, told a more in-depth version: “Four Policeman Hurt in 'Village' Raid / Melee Near Sheridan Square Follows Action at Bar"
New York Daily News had, how shall I say, it’s own point of view with the headline "Homo Nest Raided / Queen Bees are Stinging Mad"
To mark the year anniversary of the riots, on last Sunday in June 1970 there was an angry politically rally that demanded “gay liberation” and “gay power” It was a protest and defiantly NOT a parade anymore than the 1965 march out of Selma, Alabama was a parade.
But over the years a funny and wonderful thing happened:
Mae West is quoted as saying “For a long time I was ashamed of the way I lived.” To which a reported asked “Did you reform?” and Mae quipped back “NO! I’m, just not ashamed anymore.”
We learned, from the Black Power movement that “Black is Beautiful” and that taught us that “We’re Here, We’re Queer, and We’re Fabulous” – we learned to be proud of being gay.
By the time as a teenager in the late ‘70s, when I first marched in New York City’s Gay Pride Parade, it was a rite of passage for me. I’m an adult. I’m sexual! The gay disco party parade was in high gear, pun intended.
The early 1980s were a GREAT PARTY and there are lots of amazing stories to tell from that era. Unfortunately the details are a little fuzzy in my mind. Luckily, since I worked at Studio 54 and some of the other legendary discos of the age, I was able to be on camera and identified in print, so I have an archive of photos, clippings and memorabilia that reminds me of the events, even when the brain cells are missing. Yup, that’s me in the photo.
Even more Unfortunately, this was also the ground zero for HIV infection in America. By the end of the 1980s, 150 of my friends and colleagues and dance buddies would be scratched out of my address book by the virus.
For many of us, it’s stopped being a parade and returned to a defiant protest. I was part of the Healing Circle, dressed all in white with custom T-shirts for the day announcing that “Love Heals”. Every few blocks, we’d form a circle, bang on chimes and chant in a new age way.
A drag queen came up to our group and said “I love heels too – just can’t walk in flats” and I realized that it was both a march and a parade. That was the same year a I famous disco star looking cadaverous was pushed in a wheelchair down Fifth Avenue waiving. I vowed I would never miss marching in the Gay Pride Parade.
Then another 100 of my friends died, and it was harder to protest and harder to party. I retreated to the Connecticut shores for a few years to lick my wounds, heal my soul.
Well, I’ve been back in New York for well over a decade now, but haven’t returned to either marching or parading, not because I’m not proud of being gay, nor that I’m not mad as hell and not going to take it anymore, but there are lots of facets to who I am, and lots of things worthy of celebration.
When I asked Vinny, what made him proud of his Italian heritage, he was quick to answer: Art, architecture, design, fashion, Opera, passion, Leonardo da Vinci (1452 – 1519), Michelangelo (1475 – 1564), and Gianni Versace (1946 – 1997). Great food and the best red wine – especially those from the Allegrini Family Vineyards, just north of Verona in northeastern Italy.
When contemplated my Danish heritage, I thought of the sensible Socialist Order of things, of the architecture and modern design and Tivoli Gardens (my favorite place in the world) and a few dozen cakes, pasties, and candies that I know fondly by Danish name. Then I thought of a story my mother told of the Danish king of her dark childhood days:
During the Nazi occupation of Denmark, King Christian X (1870 –1947), would ride on horseback through Copenhagen each day as a defiant symbol of Danish sovereignty. The king even refused to have of the Nazi flag over Christiansborg Palace. During the Nazi occupation, a senior general raised the Swastika anyway. The king instructed him to remove it. When the general refused to do so, the king declared, "Then a Danish soldier will remove it." The German officer said that such a soldier would be shot. The king's reply was "I think not. For I shall be that soldier." The general immediately ordered the removal of the flag
Remembering that story help me understand that figuring out who I was as a person and what my heritage was. It does not require some personality quiz like eHarmony- with a laundry list of check boxes. It’s about learning and retelling the our cultural myths and legends.
I needed to return to those fairytales and folklore I learned a child. These are not just fiction. They are our profound truth. They are who we are as people.
Our heritage does not require that you carry some particular inherited DNA. We are all children of the earth and all worlds’ epic stories and myths are our legacy. We just have to figure out which ones resonate with each of us.
At our annual Passover Seder as we celebrate it here at Community Church, we are told to each new generation, that we are all Jews freed from Slavery.
In this same way, we are all proud drag queens and queers at the Stonewall Inn on of June 28, 1969 who said, “never again to being shaken down by the corrupt cops and beaten up by intolerant thugs.
We are all Danish subjects living under all powerful and seemly invincible Nazi regime, but watch our noble king defiant riding free, showing us that – just by the power of right – we all will eventually triumph and be free ourselves.
We are all segregated but proud black men and women who shared a dream on August 28, 1963 on the steps of the Lincoln Memorial with Dr. Martin Luther King, Jr.
We are all the impassioned protester standing proudly alone against the unstoppable force of a whole column of tanks in Tiananmen Square on June 5, 1989.
For years and years, my late mother did a weekly radio op-ed piece similar to Andy Rooney where she’d comment on the state of the world. These 90-second nuggets would be broadcast throughout the week. Each segment always ended “and I’m Ellen de Solla Price, and that’s my point of view” Everywhere she’d go, bank tellers, shop clerks, business executives would recognize her name and love her or hate her.
Mostly she talked about political issues and social injustice in a way that got folks to notice. Some time between Thanksgiving and Christmas, however, she’d kept returning each year to her reminder that although Men are far more visible in the world of politics and business, it is the Women – our wives, our mothers and our grandmothers – who were the keepers of our cultural identity, our ethnic heritage and our family traditions. These women taught us how birthdays were supposed to be celebrated, how Christmas was supposed to look and feel, and holiday dinners were supposed to taste.
In honor of today’s Pride Parade, I’d like to ask you to think what stories made you proud of who you are? Re-read these stories. Re-rent those videos. Tell the stories to your children, your friends at parties, or to a web-cam for YouTube. Write them down, type them up, or post them on-line. Who you are, who you will be, and who you will be remembered as, are all determined by the stories you choose in your life. I know many of you here today. You’re not a shy bunch, nor have you lived dull boring lives. Go tell some impassioned stories!]]>
Good evening. My name is Mark de Solla Price; it is a privilege to speak before you tonight and thank you for your perseverance at this late hour. I have lived in Manhattan since 1980 and live with my husband, Vinny Allegrini, in our small, rent-stabilized apartment in Greenwich Village since 1994. I’m speaking today in favor of extending current terms to being limited at three terms. I want to thank the Speaker Christine Quinn and City Council for the opportunity to hear from so many constituents like me.
Thirty years ago, U.S. Senator Hubert Humphrey said that “...the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; those who are in the shadows of life; the sick, the needy and the handicapped.”
I am one of those people in the shadows of life. I have been living with HIV/AIDS since 1983 and have been medically disabled for the last two years. Vinny is also living with AIDS and on disability, but he is mainly homebound these days, so today, I’ll be speaking on his behalf as well.
Vinny and I are two of more than 100,000 people in New York City who are living with HIV or AIDS. That’s approximately 1 out of every 70 people in this city. In my part of town, it’s one out of every four gay men who are HIV-positive.
And the folks most at risk in a time of great change are the more fragile members of our city, people like Vinny and me; our seniors, our children’s education, everyone’s healthcare and public safety.
Because our great city is the financial capital of the world, we are going to be one of those hardest hit by this once-in-a-generation financial crisis. It might well be a “perfect storm” of Wall Street losses, raising costs, escalating climate crisis and global political challenges.
Our city’s elected political leaders will have to make unprecedented budget cuts for the next few years at the very least. We are not talking about merely some belt-tightening, a little trimming of fat or downsizing some programs. From a budget point of view, you folks are going to have to do what would have been unimaginable, unthinkable and inhumane only a year ago. And then we’re all going to have to work together to make it work, somehow.
Rather than take a hatchet to our city budget and have across the board cuts in all our programs, we need a scalpel to cut what we must, and save what we can, to build our best future together. That scalpel needs to be wielded by the most qualified and the most experienced elected officials both in this room and in the mayor’s office.
So who are those scalpel wielding political surgeons? As we all know, not only is our Mayor facing term limits in 2009, so too are two-thirds of our City Council members. I ask you to think about what effect that would have in this emergency situation. Now is not the time for on-the-job training and getting new folks up to speed. When the voters instituted two-term limits, it may well have been a great idea, but they could not have possibly foreseen the circumstances that we’d be in today. Is this really the time we want to lose our city’s remarkable leadership?
Mayor Mike Bloomberg is a compassionate pragmatist, a non-partisan, a titan of business, and one of the best mayors that this city has had in my lifetime. Our City Council is experience and one of the most effective and functional that we’ve seen in years.
One of the problems with being a voice of the disabled is that I am disabled. It is difficult for me to have the stamina to be here today. There are a lot of voices like Vinny’s who are not able to be here today, and I ask that you listen to them too, even in their absence.
As a Unitarian Universalist and the Board of Trustees chair of The Community Church of New York, I feel that it is my moral duty to advocate for the inherent worth and dignity of every person and to promote justice, equity and compassion in human relations.
A true democracy is like alcoholics anonymous, where there aren't really any leaders just trusted servants acting on the group consensus. But the United States is a republic, where citizens select leaders who work for the good of those citizens, but those leaders make their own choices based on their personal intelligence, information and ethics and not necessarily the consensus view of their constituents. The most important, bold work can never be achieved just through popular consensus.
As a liberal democrat, I urge you to be republican today -- with a lower-case “r” -- and to do the bold thing that is most definitely in the best interests of the city and the voters by extending term limits in this time of crisis and opportunity.
Thank you.]]>
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In 2008, we will celebrate 15 years together. Our annual Holiday Cards embrace diversity with a multi-cultural/multi-faith inclusive, secular and atheist-friendly message. You can see past cards on our website. Up until a few years ago, we also wished “Remarkable Ramadan” but because of a quirk of the Islamic calendar, Ramadan migrates through the seasons (this year it was Sept. 13 to Oct 12), so this year’s omission is one of timing, not because we aren’t inclusive of Islamic faith.
In many ways Vinny is more active and happy than he’s been in years. He’s still living with AIDS and end-stage liver disease from hepatitis B. He is also now diagnosed with narcolepsy; like the tin man, he can get stuck mid-action. Back in July, he was hospitalized with aspiration pneumonia from falling asleep while drinking water.
In 2008, Mark will have been HIV-positive for 25 years. He’s positively not dead yet either (wink). But this last year has been a difficult one. His HIV disease is still well managed, but as we wrote last year, in October 2006, Mark was also diagnosed with hepatitis C genotype 1a/1b and polycythemia. Thanks to speedy diagnosis and an aggressive 48-week Ribavirin/Pegasys (alpha interferon) treatment, Mark will be one of the lucky few who become actually cured of hepatitis C by the time you read this. The next step is unknown; how quickly will he recover from the toxic consequences from treatment and to what level of function will he rebound to?
Being largely homebound has given Mark the opportunity to focus on his writing again, including starting a new book, blogging for POZ, a few public speeches and Alternative Conflict Resolution training as a professional Mediator. We’ve both become more involved at Community Church of New York Unitarian Universalist.
I’m sorry to write that Mark’s sister Linda Demichele’s fiancé, Andy Zartolas, died on November 26 after a really difficult year (both for Linda and Andy). Andy had a kidney transplant back in 1993, and his on-going story was inspirational. He really knew how to battle chronic illness the way we have. Andy was wise, caring and his encyclopedic knowledge, conversation and dry sense of humor will all be missed.
For our latest news with all the details, web links for more information, lots of photo galleries, and Mark’s various writings, visit our website: www.MarkandVinny.com]]>
As you may have guessed from the large image to the right, aside from being able to write this blog entry, I went to an afternoon showing of Michael Moore’s new film Sicko, which opens everywhere else on June 29, but opened a week early in New York.
As a lefty-liberal, I like Michael Moore’s previous work (Fahrenheit 9/11, Bowling for Columbine and the TV series The Awful Truth). More importantly, I think regardless of if you love him or hate him, Michael Moore’s work promotes a controversy that makes people think and talk and not just blindly support their side. Sicko isn’t partisan and even historical Moore-bashers like FOX News have praised this film.
I found Sicko an incredibly moving film. I urge everyone to see it!
The audience I saw it with (an afternoon show near Lincoln Center) audibly laughed, cheered, gasped, wept (you could really hear the sobs) and we all gave a resounding applause at the end, the way you would for a live show. They even waited silently until the very end of the credits. Partially because they wanted to read about what we just saw. And partially because we all needed a few minutes to recover before returning to the world outside the movie.
After I left the theater, I needed to go for a long walk in Central Park, down Writer’s Walk to the Great Mall to Belvedere Fountain. It one of Vinny and my favorite walks. These days it always reminds me of Angels in America, both the play and HBO movie.
How did this great country, the richest and most powerful nation the earth has ever known, end up with such a broken health care system? So far from Universal Health Care, that is considered to be a basic human right in all the rest of the developed world. Of course, I don’t really mean “how did it happen?” but rather “how can we fix this?”
As catastrophically broken as the system is, would it even be possible to federalize all the hospitals, doctors and rest of the health care system? What happens to the Big Pharmaceutical companies? Big Insurance companies? Can we close them ALL overnight like we closed the bars, breweries and distilleries during the prohibition of alcoholic beverages in the US from 1920 to 1933?
I WOULD like to think we can change things before it’s too late – I am gay and positive, after all 
Clearly good news. Most of my other blood tests were keeping about the same -- my CD 4 T-cells did drop of 304 to 154, but the probably bounce back after treatment.
Being a math geek, I had brushed up on the math formulas I'd need to understand the relative meaning of the test results.
Please feel free to skim over the next section, How To Compare Viral Load Test Results, which is more of a technical tutorial and pick up my story again at Mark's Treatment A Spectacular Success!
Then by hitting the enter key, it will calculate what the log of that number is:
My current ending value for viral load was measured as "undetectable" which (for my lab) mean the value is less than or equal to 50. Assuming the worst case, I used 50 as the ending value:
And hitting the enter key and have it do the subtraction:
Now let's do it again in one-step using the Google search page from any browser:
Type in the full calculation log(42,900) - log(50) and hit enter (or click Google Search). The result is displayed as follows. Pretty cool.
My treatment has given me about a 3 log improvement in the first 12-weeks.
Had the log improvement computed a negative number, my infection would have been worse.
For hepatitis C treatment, had the log improvement been between zero and one, most doctors would probably say that you're getting some improvement but not enough to justify all the torture and side effects.
A log improvement of closer to two or more would be considered a success.
After the guests left, I gave myself the injection and -- for the first time -- half the drug sprayed on my leg. I guess I didn't show the correct way to put it on 
She even scrubbed down the bathroom (again), did some household repairs, and even paid the ConEd bill (again!). But Vinny and I had the birthday party hats for her and lots of love. Being a couple with both folks on disability isn't great for either the money or the household chores. But we have some great memories and plenty of photos, which you can all see at markandvinny.com/gallery
I feel really happy about all the good times, but I didn't get much else done, and I don't have much human-time left until next week. And now, after a wonderful day, I just took my week number seven shot. By tomorrow, I'll probably be feeling miserable again.
This week we're trying to stave off the hives before they kick in. My elbows, knees, and ankles look like I've been sleeping in poison ivy. I'm told that strange rash-like things are pretty common, although they act very differently for each person. Technically, they are NOT allergic reactions and can be difficult to treat, but it should be easier to prevent from coming into full bloom.
Our current attempt is to dose up with Benadryl (actually DiphenhyrdrAMINE Hydrochloride, the MUCH cheaper generic) and Tylenol before the shot and then again morning and evening of the first day. The Benadryl really knocks me out, but I'll be sleeping all Wednesday anyway, but at least this way, I won't wake up with full hives. I'll have an itchy rash, but soaking in the tub once or twice a day with Aveeno colloidal oatmeal bath powder and slathering on the 0.5% Hydrocortisone Cream should help... Mostly.]]>
In theory, submitting a COBRA form, like mine on the right, should be only minor bookkeeping item. The health insurance is not supposed to be effected. You don’t even get a new card. It’s the same old policy.
On Tuesday, I saw my Ear, Nose & Throat Surgeon Stacey Silvers to figure out why I’ve been gagging and throwing up so much. I was worried that it was a complication from my tonsillectomy in 2005. It turned out that it was “just” that I’ve developed acid reflux disease, but that’s treatable with a prescription and regulating how and what I eat.
Next stop was Village Apothecary to get the prescription filled and pickup some other refills. They said the computer said I didn’t have health insurance. I said “you mean this prescription isn’t covered by my plan” and Chris said “no, it’s covered, but your policy has terminated.”
I was shocked.
Right there from the pharmacy counter I called the Dennis Daniel, the POZ human resources person who called Wendy Frank, the insurance agent. These are two terrific people and they too were dumbfounded with the insurance company’s response: “most of the time COBRA transitions are seamless, but sometimes one record has to be deleted and another added, and that can take ten days to straighten out.
There was nothing more I could do that night, and besides, I needed to go home a take my Pegasys shot.
This week my Pegasys side effects were a bit rougher than the previous week, so I didn’t do too much out of bed on Wednesday, Thursday or Friday.
On Friday, I was starting to really freak out. Every number I called at Oxford just told me I wasn’t insured. I hadn’t been able to pick up any prescriptions all week. Some insurance person suggested that I pay out of pocket and then submit for reimbursement. This week would be over $1,000. Next week will be over $2,000. That’s just not an option. Next, two of my doctor’s offices called that I was coming up uninsured and that I had to have this resolved before my next appointment.
Everything is just so automated, it’s impossible to make any headway. I don’t usually “borrow trouble” but I got to worrying what would happen if my crappy side effects got worse and I had to head to the hospital over the weekend. There was no way I could convince them I really had health insurance and that it was just a clerical glitch.
Fucking “A”, I’ve beat HIV/AIDS for almost 25 years and now I might be derailed by an insurance company clerical glitch.
On Saturday, I woke up and was feeling MUCH better, so it doesn’t feel so life and death, but I HAVE TO have this resolved before the next Pegasys shipment has to go out next week. It would be REALLY BAD to have to stop and restart this treatment. I won’t worry about that now. I’m sure collectively we’ll figure out how to escalate this next week.
Also, I got a little more perspective on all this. We're damn fortunate to have such great health insurance, even though mine had a little glitch. For both Vinny and me, our injectables cost more than our pills, but somehow the huge pile of pills are more tangible to show our efforts in working to be well. Between the two of us, we take more than 25,000 pills each year:
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