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It’s All About Love: The Life and Death of My Father, Andre Martheleur

As they walked through the door, it was as if I was looking into a three-way mirror.  In them, I saw the reflection of my face, my features and my soul.  I was fourteen and meeting my brother and sister for the first time.

My sister was full of life, love and compassion.  She had my eyes, my hair, my body, my taste in fashion, and my zest for life.  But, my brother had my spirit…my soul.

Sitting next to him, I couldn’t help but to admire his beauty.  He was the most gorgeous man I had ever seen.  His complexion was dark, his eyes were piercingly black and intense, and his demeanor was enchanting, yet mysterious.  His hair and dress were the image of perfection.  And, he smoked each cigarette with the poise of a movie star and with the seeming intention that each one would provide his salvation.

Though enamored by his silent charm and flawless appearance, I soon recognized what the mysterious façade was meant to mask.  It was sorrow, anxiety and anger caused by our father’s rejection of him.  Despite having known him for only a few minutes, I was able to see and feel his inner turmoil, because I, too, had the same emotions of betrayal and abandonment toward our father.

Both of us refused to make eye contact with him or even gaze in his direction.  We were uncomfortable sitting in the same room or breathing the same air as him.  Our ears burned and our stomach churned with each bizarre and self-gratifying word our father muttered in his exotic French-Belgian accent.  His sheer presence that day only served to remind us of his unapologetic absence throughout our entire lives.

Three years later, my brother tragically died at the young age of 27.  His death robbed me of a soul mate and my sister of her best friend.  I was shattered and mourned his loss for some time, but, somehow, I knew he was finally free.  While he died hating our father, his death ended that hate and relieved his wounded spirit.  No longer would he have to look into the mirror and see the reflection of a man, who didn’t love him the way he yearned to be loved, who was never proud of him and who abandoned him as a baby.  He no longer had to wonder if today would be the day that his father would call and say, “I’m so sorry.  Please forgive me.  I want to be in your life.”  Our father could never again break his heart.

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It was the late 1970s in New York City, and my mother was young, beautiful, in love and eager to be inspired.  My father, Andre Martheleur was from Chareloi, Belgium, a country, of which he believed he should one day be king. He was an extremely talented hair stylist and the owner of the biggest and most successful hair salon in New York at the time called CinAndre’s.  More important to my mother, however, was that he was incredibly charismatic, passionate, cultured, inspirational and mesmerizing.

They were in love, and his pet name for my mother was “Kami,” the name of God in Japanese, the one culture, by which he was most intrigued.  She was his goddess, and he worshipped her.  But, once my mother announced that she was pregnant with me, a goddess she was no longer, but rather a liability.  He insisted that she abort the child she was carrying or that their love would end.  To my mother, his dictation of an abortion stripped him of his royalty, and she chose the life of their unborn child over the fleeting love of the man she adored.

Throughout the months of her pregnancy, my mother awaited his phone call, but it never came.  In late July of 1980, she went into labor, and along the way to the hospital, a beautiful doe and her fawn crossed the street.  She knew in that instant that she had made the right decision and that she would have a baby girl.  A few hours later, she gave birth to me and to the child who most physically resembled the man she still loved.  She named me “Kami.”

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Soon after I was born, my father decided that mainstream fashion and hair was a cancer to society and that art was its cure.  He refused to allow his staff to color hair with anything other than henna or electric neon colors.  Rapidly, he lost his clientele, his staff, his business, his money and his fame.

Mahatma Gandhi left his profession as an attorney and tossed aside a life of luxury for one of simplicity, wearing only a garment of plain white cloth and eating only that, which would sustain him.  So, too, my father embraced the sacrifices he had made for his love of art.  He owned very few possessions, only a couple items of clothing and would go to the grocery to buy a mere loaf of bread.  While Ghandi became India’s spiritual icon, my father became a brilliant abstract urban photographer, a profession, which allowed solitude and never required him to have human relationships.

As a photographer, he used lighting and angles to distort reality into fantasy, capturing illusions and making them solidarity.  He transformed dumpsters, scaffolding, roadway construction and broken pieces of furniture into beautifully colored abstract shapes.  He manipulated God’s works of art, the trees in Central Park, the waters and mountains of the United States’ mid-west and the parks of Paris, into inexplicably discolored, mirrored or disfigured images, without altering a single aspect of the photograph.  He made the objects of his art the pieces of a puzzle for the mind to decipher and for the eyes to admire.

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The first remembered meeting I had with my father was when I was nine.  This long anticipated meeting was that for which I always longed.  I considered it as being  my first opportunity to be loved by my father and for me to love him.  But, alas, our encounter did not meet my expectations.   Frankly, I thought he was weird.  He spoke in riddles and about concepts of love, humanity and the universe in the abstract.  He spoke about everything and yet nothing, at the same time.  But, he never spoke about his life.

Similarly, he was indifferent towards my life, my personality or my capabilities.  Rather, he was only interested in the ways in which I resembled him.  He stared at me with fascination, pointing out how I had his hands, his eyes, his nose, his hair and his round face.  He related to me as though I was one of his photographs and not as a father to a child.

After that, my father called me twice a year, my birthday and Christmas.  Our conversations consisted of his descriptions of the rays of light coming through his window, the scents in the air from the street or from the food he was preparing, or the melodies of whichever jazz ensemble, to which he was listening.  Most of all, he spoke about love and celebrating life in the present.  His favorite line was, “It’s all about love.”

I listened intently, attempting with all my might to identify the 17 moras of what seemed like some haiku poem he was reciting to me.  But, with each telephone call, I failed to crack the riddle or to understand him.  I failed to reveal myself to him, as well, because he never asked anything about me.  And, I failed to learn anything substantial about him, because, to him, the only things, which were important, were those sights, scents and sounds of the present.

In my childhood I saw him on two more occasions.  As an adult, at my behest, I saw him a few more times.  Each visit was as impersonal as the last, like one bad date after another.  He grew more and more bizarre to me.  With each visit, however, I managed to learn more about who he really was.  I achieved this, not by desperate attempts to interpret his words, but by observing his actions.

From the cracks in the street to women, both young and old, he found beauty everywhere.  He loved music and got lost in its tunes and vibrations.  He had a profound admiration for food, no matter the background or culture.  (To be sure, I have no doubt that his enjoyment of pot enhanced, if not inspired, these strong feelings.)

On the other hand, I also quickly learned that he was controlling, judgmental and selfish.  Our meetings were on his terms, the time, the place, the people and conversation.  He judged my decision to become a religious Jew, to work as many hours as I did, to sleep in on my days off and my feelings of sadness when my heart was broken.  (Interestingly, Erik Erikson’s biography on Ghandi discusses how Ghandi would judge those around him, accusing them of evil desires.)  And, finally, while at first encounter, he seemed to be generous, always bearing some gift in hand, he never offered to lend a hand in times of need or to help, when it was inconvenient to him.

Our last encounter was in February of 2006.  Only a few months before, I had moved to New York City to live and to work as an attorney.  The rain was coming down in sheets, but I was determined to make it from my office in Tribeca to my conversion classes on the upper west side.  After I boarded the bus, I soon realized that the rain had seeped into the electronics of my wheelchair and that I was stranded on a bus, headed for the Bronx.  I desperately needed help, so I called the one person I knew – my father.  He answered the phone, seemingly high, and flippantly responded, “Well, I’m with a friend, and what do you want me to do about it anyway?  Can’t you call someone else?”  So, I did.  I called a Puerto Rican cab driver with an accessible cab, who I had met 3:00 a.m. one night in the meatpacking district.  This perfect stranger came to my rescue, covered in tattoos, including two teardrops tattooed next to his right eye.  Looking at those teardrops, I decided that I would never again allow my father to make me cry.   For years, he had chosen not to be a part of my life.  Now, I would choose not be a part of his.

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Just a few weeks ago, my father’s friend posted on Facebook that one of her friends was dying and in terrible agony.  I had heard a few months earlier that my father had prostate cancer and was refusing treatment.  I inquired of this friend whether she was referring to my father in her status, and, indeed, she was.  I never thought that I would find out through a Facebook status that my father’s last breaths were imminent.

As each day passed, I wondered if that day would be the day that my father would call me and tell me himself that he was dying.  I wondered if he would apologize to me for never being a part of my life and for never loving or supporting me.  And, mostly I wondered if he would ever care to call and say goodbye.  That day never came.

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On the last day of Sukkot, the Jewish holiday which recognizes and celebrates the value, albeit fleeting, of things temporal, my mother informed me that she had just received word that my father died the night before, September 27, 2010.  She told me that he died in his Mott St. Apartment, in Soho, and was in terrible agony right up until the moment he passed on.  At first, I felt nothing, but within a few minutes, my heart felt heavy as I realized that my father never even cared enough to say goodbye.

As I was shopping in the grocery store minutes later, the anxiety set in, and the memory of my brother came rushing back.  I remembered the image of him so clearly smoking his Marlboro Lights and the smoke lingering in the rays of sunlight.   I approached the cash register, and after the clerk had gone through all of my items of groceries, I uncontrollably blurted, “Can I get a pack of Marlboro Lights?”  Not having ever been a smoker and finding the habit particularly disgusting, I couldn’t believe I had made such a request.  Nonetheless, I went home, opened the pack of cigarettes, went out to my garden and smoked a cigarette, hoping it would cure the anxiety and bury my emotions.  Instead, the cigarette made me terribly ill, and I was forced to find a healthier coping mechanism.

That night, I lit candles to bring in the Jewish holiday of Simchat Torah, the holiday, which celebrates the completion of the year’s reading of the Torah and the joy of beginning it all over again.  While people were in the streets dancing with the Torah, I was crying from within my apartment walls.  All I could do was lie in bed and wonder why it was that I was mourning the loss of someone I never even had.

The next day, I found a blog online, written about my father’s death by an apparent friend of his.  She described him as an inspired lover of life, a father, a spiritual warrior, a disciplined free man and a dear friend.  She described his apartment, in which he died, complete with his meditation chair and the picture of his childhood nanny.  In response to this blog, many people commented on what an amazing man and friend my father was.  They wrote mostly about how he taught them about love and celebrating life.

The blog and its comments caused my pain to grow more intense.  I couldn’t understand how he could be such a wonderful and loving person to all these people and yet couldn’t be that person to me.  How could these people be so inspired by the man who abandoned his family, his wives, his lovers and his children?  How was it that the same man, whose son and daughter could not look him in the eye because of the suffering he had caused them, was the same man who taught these people about love?

His memorial service was at St. Mark’s Cathedral in Manhattan on Saturday, October 2, 2010.  The service’s theme was “The Celebration of Andre Martheleur’s Life.”  While I was unable to attend, my grandmother sent flowers on behalf of our family and included a note, which read, “It’s all about love.”  Many people, both friends and family, came to his memorial, whether to celebrate his life or to mourn his death.  Countless individuals, the majority of which were women, stood up and spoke of their warm and special experiences with him.  But, one person stood up and spoke frankly.  She stated that she wished she had been able to see this wonderful side of Andre, of which so many spoke.  This person was my brother’s dear and beautiful mom.

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As I pondered my father’s life and death, I realized the he also taught me about love.  Through him, I learned that there are two types of love – one that is fleeting and one that comes with commitment and loyalty.  My father achieved, in its purest sense, fleeting love.  He lavished in the moments of a piece of music, in the few seconds of tasting a piece of sushi, in the glances of a ray of sunlight and the passions of an unattached woman’s touch.  He taught those around him, his friends, how to appreciate and to love temporary blessings as a way to celebrate life.  However, he knew nothing of love with commitment and loyalty.  He was unfaithful to his wives and abandoned his children.  When times were difficult, he could not commit to being there.  He loved a woman like a goddess until she became a liability or until she no longer agreed with everything he said or did.  He was only capable of a roundabout way of loving himself.

There is a Midrash (Jewish teaching) that asks which love is more important:  the love of a friend or the love of a neighbor?  The Midrash teaches us that the love we have and give to our neighbor is far more important and more valuable than that which we give to a friend, because the love of a neighbor is a love, which contains commitment.  We choose who our friends are.  When they disappoint, anger or betray us, we are able to easily leave, because no sense of commitment attaches us to our friends.  However, we are unable to choose who our neighbors are.  No matter if they upset, anger or annoy us, each day we are committed and forced to return to our houses and to see their faces in the hallways of our apartment buildings or in their adjacent yards.

I finally realized why all these friends could say such lovely and heart-felt things about my father.  They were simply his friends.  He owed no sense of commitment or loyalty to them.  He taught them how to love, and then he left to return home, where he was alone.  He was not a different person to these people than he was to me, but, rather, I was a different person to him than they were to him.  I was his daughter, a person, to whom he had the obligation to be committed.  But, because he never knew how to love with commitment or loyalty (and possibly because he was never taught, given that his nanny raised him), he was incapable of loving me the way he should have.  I realized that the way he behaved really was “all about love.”

It is only fitting then that he died during Sukkot.  On Sukkot we read Kohelet.  King Solomon in Kohelet helps us understand one of the meanings of the holiday.  Sukkot is the celebration of those things in life, which cannot endure, the sukka, which is vulnerable to weather, the seasonal fruits, which will spoil, and the leaves, which are changing color.  We are to enjoy them because they are a gift from God, a gift that may not be with us tomorrow.  So too, we must enjoy the friends and family that God has given us as a gift, for they may not be with us tomorrow.  It is a time to, as my father would say, “Celebrate Life.”

Finally, his memorial service was held this year on the Shabbat that we, as the Jewish people, began to read the Torah from the beginning again, reading the portion, “Bereshit,” which means “In the beginning.”  This reading is a symbol of our commitment to the Torah.  Simply because we have finished reading the Torah does not imply that we move onto something else.  We are committed to reading it over and over again for the rest of our lives.  It is also a day of new beginnings and of fresh outlooks on something we’ve visited countless times.

My father’s death has given me great resolution.  I have decorated my walls with his art, as a reminder of the love he was able to achieve.  I will remember every lesson he taught me on how to love those things, which are only temporary.  Instead of a picture of a nanny, I have, on my bookshelf, a picture of my father as baby in his mother’s arms, representing a love to me that he failed to achieve.

Now, it is a new beginning of my life.  No longer will I have to look into the mirror and see the reflection of a man, who didn’t love me the way I yearned to be loved, who was never proud of me and who abandoned me, while still in my mother’s womb.  I no longer have to wonder if today will be the day that my father will call and say, “I’m so sorry.  Please forgive me.  I want to be in your life.”  My father can never again break my heart.

Hillary Clinton v Donald Trump on Disability Policy

Read my latest and final piece on disability policy during this election. A line-up of the two presidential candidates:

Political Opinion Piece: Which Candidate Will Prioritize Disability Policy

Thank You, Donald Trump, for Giving Me the Courage to Come Forward with My Sexual Assaults

As much as I hate to do this, I have to thank Donald Trump. Thanks to the #TrumpTapes released last Friday, where he admits to sexually assaulting women because his celebrity status entitles him to do so, millions of women have come forward with their stories of sexual assault and shirking the shame that accompanies the assaults. And I am one of them. 
For years, I kept silent about the multiple times I have been sexually assaulted by men…until this year. I came out publicly as a victim just a few weeks ago when I spoke to the North Carolina Democratic Party State Executive Committee about disability rights and policy. In doing so, I informed the party, when discussing criminal justice, that 80% of disabled women are sexually assaulted, many of which have been victimized on multiple occasions. I followed that fact up with the unfortunate truth that I am part of that statistic. My voice couldn’t help but to crack, and many audience members teared up. However, I have never publicly talked about those incidents in detail until the Republican nominee for President of the United States, Donald J. Trump, was caught on a live mic bragging about sexually assaulting women. And for that shirking of burden and shame, I am grateful. 

Americans need to understand just how serious and real sexual assault is and should never be something, about which to brag. Therefore, I am going public with the dreadful assaults I endured that had Donald Trump committed, he would’ve bragged about:

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The first time, I was five. A step-family member exposed himself in my face and asked what I thought of it. And that wasn’t the only time. I was so young that I never even understood how terrible and abusive it was. So I never told my mother until I was an adult. He, too, like Trump, felt entitled to sexually abuse a girl, while professing himself to be a devout Christian. 

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Several years later in life, while in high school and a young developing woman, I visited the eye doctor. Diligently studying 15 hours a day took a toll on my distant vision. So I needed glasses. The ophthalmologist, during the entire eye exam, pressed his genitals on my leg and touched my thigh with his hand. 

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Neither of those incidents compare, however, to what I endured in law school. On Valentine’s Day, I spent the day protesting the holiday with my best friend, as both of us were single. He drank copious amounts of wine (3 bottles, to be exact). So, to protect him, I permitted him to sleep over, rather than drive home drunk. I went to sleep, only to wake up to him taking off my clothes and ultimately raping me. Despite saying “no” repeatedly, he continued, and due to my disability, I couldn’t fight back. After it was over, he permitted me to get up and go to the bathroom to rinse the blood off, but I had to return to my blood soaked bed and re-lie in those sheets, due to my inability to change my own bedding. After he left, in shock, I called my classmate and girl friend, barely able to utter the words, asked her if she could come over and help me change and wash my bedding. She rushed over and took the bedding off as quickly as possible, but the beautiful silk pillow my mother made for me was ruined from blood that could never be removed. 

I suffered from terrible PTSD, which according to Donald Trump must’ve been due to being weak, and couldn’t bring myself to go to a doctor for three days, as the emotional pain was far worse than the physical pain. The exam was almost as bad as the rape. It was like reliving the assault all over again, as is every cervical exam since. The lacerations were still there, and they healed relatively quickly. But the emotional scars will likely never heal. 

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Several years later, I moved to NYC and then Israel, where I had unfamiliar men in both places grope me, lick me, rub me, make kissing sounds at me, stalk me, follow me home in their cars or on the subway. But the worst offense is when, one night, I was “walking” home late at night in Jerusalem, because the last bus home was inaccessible. The walk was an hour walk, it was midnight, and my battery was dangerously low. I called my friends for desperate help, but finding an accessible vehicle, that late at night seemed unlikely. An ultra orthodox man with a beard, dressed in a white shirt and black pants, tzit tzit exposed, in a white bread truck-like vehicle stopped and offered to help me home. I explained to him in my broken Hebrew that it wasn’t possible, because I couldn’t access any vehicle without a lift or ramp, but thanked him for the offer. He said excitedly that he had one. As a fellow religious Jew, I trusted him and thanked God for sending an angel. It was conceivable to me that he had some sort of loading ramp, due to the shape of his vehicle. So, he told me to just meet him in the adjacent alley. And I complied. 

He parked and met me as I was going toward his car. But when he reached me, he immediately began rubbing my back. I knew instantly that I was in danger, and the apparent angel was a wolf in sheep’s clothing. Religious men are forbidden by Jewish law to touch women except their wives. In my broken Hebrew I kept saying “no” and “don’t touch,” but he didn’t obey. He proceeded to take my belongings away from me, kiss, lick and suck on my neck, tried kissing my mouth, akin to Trump’s admitted behavior, and then put his hands up my skirt (which I strictly wore for religious purposes). 

I tried to move my chair with the joystick, but he grabbed my hand and kept me from doing so. Again my disability kept me from fighting back. But I had mental strength. I kept telling him that my friends were coming to pick me up and were on their way. He responded by reaching to pick me up out of my chair like a child, in an attempt to kidnap and rape me. I grabbed my joystick and spun my chair in the opposite direction, which made him lose his balance and stumble. At that very moment, God answered my prayers and a car approached, in this, otherwise, empty part of the city at night, and I lied and said, “there are my friends!” He ran to his truck and raced away from the crime scene. 

My friends were indeed coming in an ambulance, but I didn’t know when they would arrive, and I was terrified he would return beforehand. The two minutes that passed before the ambulance arrived, right as the predator did, in fact, return, I shook in terror. When they arrived, they saw me and knew with a simple glance that something terrible occurred. 

This time, I reported it to the police, but they refused to investigate. Even though he touched my chair, laptop and handbag, all of which he could’ve left fingerprints, they refused to brush for them. They made me come to the precinct several days later to make an official report and then told me they could do nothing because I didn’t have the wherewithal to get his license plate number while he was speeding away from the crime scene. 

The next few weeks were emotional torture. I was terrified to go outside. When I did, I would see him everywhere. Every man with a white shirt, black pants and a beard terrified me and sent me rushing home, often preventing me from attending rape counseling. I suffered from countless panic attacks, and soon thereafter, I decided to never wear skirts again, breaking Jewish laws of modesty for my own safety. 

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I had hoped that was the end of my victimization, but another was yet to come. Several years later, in North Carolina, at Charlotte’s downtown CMC hospital, I was severely ill, suffering from sepsis, and an Emergency Room tech transported me to my admission room. Once we arrived, he transferred me to the other bed and then reached under my gown, right in front of my mother, and groped my left breast. I was so sick that my fever was 104 and my heart rate was 136. I was fighting for my life and in no condition to report a sexual assault. But once I was no longer septic, I told a nurse. The hospital investigators came to my room and ultimately decided that I was lying because I didn’t immediately report and there had never been a report against him like that before. And the police took their word. He, like, Donald Trump, felt entitled to grab my “t*t,” as our Republican nominee calls them. 

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The media’s focus on the Trump Tapes is about his lewd comments and language, and they entirely miss the point. Donald Trump is admitting to committing sexual assault. He shouldn’t be our next President. He should, instead, be on the sex offender’s registry. If he weren’t a rich, privileged white man, he would be. Rather, he is a major party’s nominee for POTUS. 

In the face of a decision between a sexual predator, who assaults, belittles, insults and gropes women, and the potential first female president who is the most qualified person ever to run for the office of POTUS, I can affirmatively say #ImWithHer. 

To those who believe his comments were, indeed, “locker room banter” where “boys will be boys”: you are perpetuating the rape culture that is so prevalent in this country and abroad. No man, regardless of his celebrity status, is entitled to grab a woman’s crotch or kiss her without prior consent, let alone brag about it while mic’ed for a televised show. 

To those who say Trump’s comments are no worse than singing along to lewd lyrics: this is such a false equivalency, and it’s offensive to women, like me, who have been sexually assaulted. Repeating lyrics have nothing to do with your own actions, let alone akin to bragging of committing sex crimes against women.

To those comparing Trump’s pride in assaulting women to Bill Clinton’s affairs: again, this is another false equivalency. Bill’s affairs were consensual. Infidelity does not sexual assault make. And even if it did, Bill Clinton is not on the ticket! Women are not an extension of their husbands anymore. You are making women empathize with and relate to Hillary more than ever. 

Trump’s decision to compare his crimes to Bill’s indiscretions is such a losing strategy when women make up more than a majority of the electorate. And his perpetual blame game, in this instance, excuses rape and rape culture. I implore every woman, every father to daughters or with a mother, every devout religious person, to think about what message it sends to the women of this country and the world to elect a sexual predator to be the leader of the free world. You have the chance to come forward against sexual assault and a man who boasts of committing the crimes, of which I was a victim…a chance to tell your children that you stopped a sex offender from ruling this country. A vote for Trump is tantamount to a vote for condoning rape. This is the antithesis of the family values, to which the Republican Party so staunchly cling. 

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 Please, Dump Trump, end our country’s pervasive rape culture, and simply thank him, as I have, for bringing national attention to sexual assault. 

The Intersectionality of Disability and Being #StrongerTogether

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Recently, North Carolina, my home state, passed HB2 (House Bill 2, aka “the bathroom bill,” aka “Hate Bill 2”). The main portion of the bill, which has been politicized, is the bathroom portion of the bill, which requires people to use the bathroom of the gender listed on their birth certificate. This was in response to a Charlotte ordinance allowing transgender people to use the bathroom of the gender with which they identify.
However, this bill goes far beyond refusing to let transgender people use the bathroom of their choice. The bill reversed every anti- discrimination law ever passed in the state of NC, took away small government’s right to legislate and disallowed city and local ordinances from raising the minimum wage, even when those cities are far more expensive to live in. Thus, as a result of HB2, it is now legal under NC state law to discriminate against someone for his race, national origin, religion, color, sexual orientation, gender, gender identity, age, and disability.
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So, why is it, then, that it seems that the disability community isn’t joining the battle against HB2 the way we’ve seen the LGBTQ and black community do so? Conversely, why doesn’t the LGBTQ, black and other minority groups join in our battles for equality? I feel there are a few different reasons behind this.
First, the disability community, sadly, is very divided and, thus, politically weaker.

Second, other minorities don’t consider us a minority and often oust us from their fight, as we aren’t considered minorities and viewed as members of the white majority.

Third, our disabilities often make organizing and hitting the pavement to protest more difficult than other minorities.

And, finally, our fight is interpreted as one of accessibility alone, as most people don’t realize just how much animosity the disability community is subjected to by non-disabled people.

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The disability community makes up 20% of the population, but we come in all shades and varieties. Some of us are mobility impaired, like me, and often identify as disabled. Some are deaf or hard of hearing, blind or visually impaired, autistic, intellectually disabled, mentally ill, or chronically ill with pain or GI conditions, and these people often don’t even identify as disabled.
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Beyond our disability needs, we are further divided by intersectionality. This brings me to my second point. The non-disabled community often sees the disability community as straight white Christians with disabilities and, thus, part of the majority. We are, decidedly, not. Disability impacts every race, religion, and sexual orientation. We often identify first as these minorities and disabled somewhere later or not at all. I, for example, identify first as being Jewish, and some of my closest disabled friends identify first as gay or transgender.
Minorities must join together and build powerful coalitions and allow our allies to join our fight. Hillary Clinton’s new slogan, “Stronger Together” is so true, and we must always remember this.
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Finally, non-disabled people think disability discrimination is nothing more than a lack of accessibility and, thus, our plight isn’t as sympathetic. But, this is far from the case. The congressional history of the Americans with Disabilities Act is filled with gut-wrenching stories of people with disabilities being thrown out of movie theaters and restaurants because the other patrons didn’t want to be forced to look at us – and this still happens today. We also deal with high levels of violence, but no one knows about it. Disabled prisoners, like Freddie Gray (developmental disabilities), Sandra Bland (Epilsepsy) and Brian Sterner, (who was thrown from his wheelchair by police who thought he was faking his disability), died or were killed while in police custody. In fact, 50% of police brutality killings involve people with disabilities.
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Perhaps the one person who can unite us all, as she has heard our voice, is Hillary Clinton, the first woman ever to be presumptively nominated by a major political party for the position of President of the United States. She has done so well at including people with disabilities by embracing our issues, taking them on as her own, saying “disability rights are a human right,” and including us in every speech.
We should join forces with her and let her proverbially stand up for those of us who can’t literally stand up ourselves.
About the author:


Ariella Barker, Esq. received her BBA and JD from Emory University. She worked for many years representing the City of NY and Mayor Bloomberg in employment discrimination lawsuits. She was Ms. Wheelchair NC 2014. After writing the powerful essay Berned by Bernie. Ariella now supports the Clinton Campaign. Follow her Facebook.
This piece is a compilation from her original pice, entitled “Disability Rights is a Human Right” published on Push Living at pushliving.com/…

Politicizing the Opioid Epidemic at the Expense of Chronic Pain Sufferers

On a cold, wintery day in NYC, I drove my wheelchair from my law office in the financial district to Beth Israel in Union Square. Frozen to the core and in tremendous facial pain from the cold wind striking my face, I entered the waiting room of the pain management clinic. On a break from work, I arrived in my typical designer suit and shoes, but out of the remaining twenty patients, only one other patient even resembled me. The waiting room was filled with typical looking addicts waiting in line for their next fix. Their hair was uncombed, their bodies and clothes were filthy, their bodies exposed from immodest clothing, and their voices were loud and agitated. My chest tightened with anxiety and fear. Is this how I, too, would end up?


The nurse called my name, and I followed her to the examination room with baited breath in the hopes that this doctor could help me fight the cruel pain of trigeminal neuralgia (“TN” also known as “the suicide disease” because 50% of patients kill themselves from the unbearable pain). As we approached the room, I dodged a doctor-patient altercation. Screaming, the patient insisted on more drugs. The doctor, unphased by her patient’s behavior, retorted, “absolutely not! Your last prescription should not be empty already. Please leave.” After earning a BBA and JD, I never thought I’d be going to the same doctors/drug dealers as junkies.

Unfortunately, the appointment made my future seem even grimmer. After being on 26 different non-opioid drug therapies, trying hypnotism, medical massage, cupping, Chinese medicine and acupuncture, as well as a failed open craniotomy, my options were few and discouraging. I could try another anti-convulsant, but chances were, it wouldn’t help the pain and would turn me into a zombie. So, I chose, with the doctor’s advice, to go on a long-term regiment of Percocet. 

While it took the edge off of my suffering, even the opioids couldn’t eliminate my pain. The pain was so intense that neighbors often heard me screaming and would come to my rescue. I would regularly be forced to run to the doctor’s office on deposition lunch breaks for injections of Toredol, a non-opioid powerful anti-inflammatory, just to have the ability to mouth the word “objection.” Ultimately, I had gamma knife brain radiation, where a halo was screwed into my skull while conscious, to blast the nerve. In addition to gamma knife, I also subject myself to bimonthly nerve blocks through my skull. However, with all of these procedures and desperate attempts to eliminate my pain, I am still forced to take a daily opioid regiment. 

Before becoming ill with TN, I never used controlled substances. In truth, I abhorred the sensation of being high. I felt my brain was being fried like the eggs on those “just say no” commercials of the 90s. And a family member’s opioid overdose in 1997, caused by his doctor’s failure to properly treat his cluster migraines, was devastating enough to deter me from ever experimenting. 

I have since learned that, when used to fight pain, opioids don’t cause a high. Rather, they level out our body’s pain receptors and assist in returning the body to its intended state of calm, lowering our elevated heart rates and raising our blood pressure to normal healthy levels. For me, taking an oxycodone is the difference between being rushed to the emergency room and remaining in my bed, rocking back and forth in a fetal position with boiling rags applied to my face until the pain is ameliorated. 

Daily opioids provide an effective method to combat pain in chronic pain sufferers. Yet, time and again, we are accused of being addicts and interrogated like criminals by everyone from pharmacists and doctors to our politicians and the media. Even when Prince passed away after suffering from chronic pain and epilepsy, the media smeared him as an addict because he had a bottle of narcotics on him. In reality, chronic pain sufferers are forced into opioid dependence and then shamed for it.

The issue has become so politicized that politicians like Bernie Sanders tell those in agony to do yoga and guided meditation to ease our suffering. The sheer insinuation that yoga or guided meditation would help a war veteran with phantom pain from an amputation is insulting and only demonstrates an utter ignorance on the issue. Politicians do not need to deprive us of the medication we need because of the few who can’t follow the established regulations. 

Narcotics dependence isn’t something, which only affects the homeless, criminals, musicians, artists and junkies, like those I saw and feared at the pain clinic. This dependence takes prisoner those with chronic pain, like myself, war veterans, or those with such deep emotional pain that, they, too, seek relief. As much as opioids have saved me from ending my own life out of desperation, it has just as easily ruined my life, whether it be from liver damage, severe withdrawal or exacerbated pain. No one chooses this life. I would do anything to flush my pain killers. But, for now, I have no other option. 

So, to all those politicians who ignorantly tell chronic pain sufferers to strike the lotus pose the next time we’re in pain and accuse us of being addicts, let me be clear: Keep your uninformed opinions to yourself. We aren’t addicts. We’re survivors. 

“Berned” by Bernie Sanders

Last fall, a fellow disability activist and close friend of mine introduced me to Bernie Sanders.  From the moment I first heard his platform, I was hooked.  After living abroad several years in a country with socialized medicine and heavily subsidized education, I was thrilled an American politician was proposing these policies here.  Due to my own disabilities, the cost of healthcare has become exorbitant and becoming chronically ill forced me to leave my career in public service litigation to collect meager social security benefits.  So, Bernie’s message resonated strongly with my own personal experience of being in the 99%.

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I was so moved by his message that I began volunteering for the campaign, be it through phonebanking, texting or simply bringing his message to everyone I knew.  I believed so strongly in the change he could effect that I even donated more money than I could otherwise afford to help his campaign succeed.  And I quickly became part of the Bernie or Bust movement, believing his campaign’s message that Clinton didn’t care about anyone other than her special interest donors.

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But I often struggled with his rhetoric on and lack of inclusion for people with disabilities in his stump speeches, acceptance speeches, debate performances, advertisements and campaign literature.  Despite discussing issues that affect our daily lives like healthcare, income inequality, social security and criminal justice, he almost never mentioned the disabled population, which makes up 20% of the American electorate.  He harped daily on how the Donald Trumps of the world try to divide us up based on our minority status but never even included disability as one of those dividing factors.

Meanwhile, I became more frustrated because Hillary Clinton was including us in every speech, ad campaign, debate performance and even intersectionality graphics of disabled people of color in her literature.  She issued press releases supporting the Disability Integration Act, which requires Obamacare plans to cover long-term care for people with disabilities, and talked about sub-minimum wage, a construct by which employers can legally pay the disabled less than minimum wage. Bernie either never did this or lagged behind, as if he was only doing it because Hillary was.  I sincerely felt as though Hillary was just paying lip service to us and that Bernie was simply uninformed.

So I began contacting the campaign as early as the fall to advise them on their disability outreach failures, as well as to communicate grave concerns the community was having with some on his policies. I tried every possible method of communication from emailing the campaign through the website and contacting them through social media, to direct emails and text messages to top political directors, including Jeff Weaver, BEGGING them to respond.  I also discovered that I was not the only disability activist experiencing this very frustration with the campaign.

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After weeks of being ignored, the day after the New York elections, I sent one final message to the campaign saying that I was going to withdraw my support and advise the community to do the same if they didn’t care enough to even respond to our pleas for representation. Finally, his political director, Billy Gendell, a non-disabled male, responded by scheduling a phone call with me. I was finally hopeful once again, but what came next was personally devastating.  I began the conversation about the issues the community is having with his lack of rhetoric and lack of inclusion for people with disabilities, as I delineated in my emails.  I sincerely wanted to help the campaign improve.

However, he quickly interrupted me from giving them advice, despite knowing my credentials and insisted that I get to my policy questions.  But he asked that the answers remain “off-the-record” so that I could not share them with the community that was asking them.  His answers provided no new information or specific methods by which to initiate these broad ideas.  The only policy answer that wasn’t “off the record” was Bernie’s official statement on the opioid issue, sent to me via email. It said that chronic pain sufferers should seek yoga or guided meditation to ease our suffering.

I was shocked.  These recommendations are ones given to chronic pain sufferers by uneducated individuals with zero medical understanding of pain and the neurological system.  I immediately responded back to his email that he cannot expect an amputee with phantom pain to do yoga when in such dire pain that it causes his heart rate to soar and his blood pressure to plummet. I told him that it’s insulting to even insinuate such a thing. But, as, unfortunately, I expected, he never even replied, and I simply gave up trying to reach out.

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Meanwhile, none of his policies for people with disabilities changed, and he made little to no effort to include us in his speeches, other than to  occasionally discuss all disabled people in the context of social security, rather than his typical inclusion of only disabled veterans, as if only they matter because they became disabled at war.  (And I gave him credit on facebook for doing this once at the Washington square speech and emailed the campaign to thank them for it, which went unanswered) But he continued to fail to mention or depict us in any of his speeches or ads.

The feeling of devastating disappointment and betrayal sank in.  The thought of considering Clinton felt hypocritical of me.  I told myself, “How can I support someone who probably cares more about Wall Street than me?”  But I certainly couldn’t consider Donald Trump, who mocks disabled people and assumes we’re stupid enough to think that’s not what he was doing.  So, begrudgingly, I told a Hillary supporter with a disability that I was now considering supporting Hillary. He immediately introduced me via email to a blind Clinton staffer. Within literally minutes, she emailed me at 9 p.m. saying she would like to speak to me about the campaign. I was so encouraged by how quickly they responded, after the months I was ignored by Bernie.

She didn’t treat me like a nuisance like the Bernie campaign did but rather an asset.  She wanted to know my legal and advocacy opinion on disability policy.  She explained in detail how Hillary planned to initiate change for us with sophisticated, legal political strategy.  And, then she asked me to come on board and help the campaign best meet the needs of the disability community through, inter alia, writing for the campaign after they were able to officially vet my credentials.  (Which has not yet occurred, and I, in no way, am writing this on behalf of the campaign) I soon realized that the Clinton campaign didn’t just care about the disability community; they hired us and treated us like the intelligent people we are.

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My conversation with the Clinton campaign regained my hopefulness but also made me incensed that Bernie is maliciously lying to democrats about Clinton’s uncaring regard for the 99%, while destroying the party from within.  Bernie is adamant that Hillary only cares about corporate interests and not the typical marginalized American.  But, in fact, the opposite is true.  If he cared about his supporters’ interests, his campaign would respond to these communities, listen to their issues and modify his platform accordingly.

His speeches never change for a reason. It isn’t because, as his supporters allege, he’s authentic and always on the right side of things. It’s because he doesn’t care to adapt, to research issues other than income inequality and the environment, follow up on his lofty ideas with solid policy initiatives or to make any compromises to achieve his goals. Rather, he just plays the blame game, pointing out everything that’s wrong with this country and proposing no specific plans to achieve his goals.  He prides himself on being so honest and trustworthy while lying to the electorate about his concern for our well being and Hillary’s lack thereof.  In reality, I see now that he doesn’t care about anyone’s well being but his own ability to rise to power.

What’s worse is that he is riling up his base to believe that the system is rigged, corrupt and rife with election fraud, based on theories grounded in conspiracy rather than fact. He’s excusing their violence and death threats on constituents’ frustration, rather than explicitly denouncing such vile behavior.  The superdelegates are voting for Hillary, and some are starting to shift support from Bernie to Hillary, which I suspect will continue to occur, because they are experienced policy makers who recognize that Bernie has proposed no actual comprehensive policies to achieve his goals.  They realize that, in the year he’s been running for President, he hasn’t created one single concrete plan. Superdelegates are in place to prevent dangerous politicians, like Trump, from achieving power when they don’t have the capabilities to effectively use that power and, thus, make things much worse in the end.

Coming to terms with these realizations was very difficult for me.  I literally grieved and cried when I discovered that I had been so maliciously misled by someone I believed to possess such a high moral compass.  I recognize that his supporters are frustrated and angry over income inequality, because I am too.  But I plea with his supporters to wake up to HIS fraud and ask yourselves why he answers every question on every topic, from ISIL to our broken public school systems, with concepts of income inequality.  It’s not because that issue is the root of all things wrong with our country but because he doesn’t care to research and be advised on any other issues, despite having the time and resources to do so.

Those of you who are Bernie or Bust, like I was, please, I beg of you, consider my personal experience.  Google me.  Find me on Facebook and Twitter.  See for yourselves that I was Bernie or Bust, that I’m not some Wall Street attorney rolling in money.  I am a disabled woman, struggling to make ends meet and to pay my medical bills.  But I now recognize that Clinton is the only candidate willing to make the effort to effect the change we need.  We cannot afford Trump or Bernie in the White House. They will only be given enough power to destroy what fragment of the American Dream we have left.

(For those who seem hell-bent on believing that my having lived in Israel somehow makes me biased: Bernie also lived there, I dislike the right-wing government there, and I continued my support for him after he criticized Israel in NY)

@barker_ariella

Ariella Barker, Esq.

Ariella has a BBA and JD from Emory University. For many years, she represented the City of NY and Mayor Michael Bloomberg in employment discrimination and labor law claims. She currently sits on the Council for Disability Rights for the Mayor’s Office of the City of Mooresville, NC and works as a disability advocate since being crowned Ms. Wheelchair NC 2014. 

19Kamibarker6.28.14

Game of Thrones: Returning from the Dead and Grappling with Religion

This week on Game of Thrones, we witness the main protagonist, Lord Commander of the Night’s watch, Jon Snow’s, resurrection. The scene had a particular significance to me, because, I, too, have been brought back from the dead, albeit for a much shorter period of time than Jon Snow. Having gone through the experience myself, I found the scene moving, yet chilling. 
In the opening scene of season six, episode three, Jon Snow gasped for air, as he returns from the dead, much the same as someone would if he were coming to the surface of water after an extended period of time. His breaths resounded in fear, confusion and personal struggle. Once he caught his breath, he sat upright, naked, vulnerable and confused, and pondered in silence to absorb and grasp the reality of the situation. He had been murdered by his own people, stabbed in the abdomen and heart, including by a 12-year-old boy, several hours prior, and, despite bleeding to death, he was, again, alive. It is an experience like no other. 

Last year, I was rushed into emergency surgery to implant a nephrostomy tube in order to externally drain my kidney, as the flow of urine was obstructed by a massive kidney stone. The stone had caused a severe infection, which quickly led to sepsis. I entered the operating room, was placed on the table and was given some sedation to ease the trauma. The next thing I remembered was coming to with a tube down my throat, which was connected to a ventilator. My hands were tied to the bed to prevent me from pulling out the intubation. I had the tube in my back, and a central line in my jugular. And I had a blood pressure monitor glued to my groin with a substance that caused a severe chemical burn. 

In utter confusion, trauma and excruciating pain, I thrashed in the bed like a wild animal chained to a cage. I choked and gagged, feeling as though someone was trying to choke the life out of me. I tried to speak, but the intubation disabled my vocal chords. So I could do nothing more than loudly moan and cry. I couldn’t understand why they had done this to me. 

I was informed that I had gone into septic shock during the operation, causing my blood pressure to bottom out to nothing and my breathing to stop. They had to place me on a ventilator because I would not breath on my own. And the blood pressure gauge was affixed to my groin, because my blood pressure was so low, a standard cuff could detect nothing. I couldn’t believe what I was hearing. Unable to communicate in return, questions remained unanswered, and, at that point it was irrelevant. I was in terrible pain and panic, and the doctors couldn’t give me any sedation or pain medication, due to my practically nonexistent blood pressure. So the gravity of the situation had not yet been realized. 

A nurse was pushing me quickly down the hall, and I felt my body and spirit lose all strength or will to live. The nurse, in a frenzy, radioed for help because “I’m losing her!” And then everything went black. They managed to inject me with enough “pressers” to bring my blood pressure back up before I flat-lined again. Once I regained consciousness, the trauma only worsened. I made the most horrific muffled sounds of anguish and tragedy, gurgling through the intubation. Though it seemed like days, I went without any form of sedation for nearly 24 hours. 

The fact that Jon Snow never screamed, thrashed or rocked in pain is highly unlikely and unrealistic for someone with open wounds all over his abdomen and chest. But the subsequent scene was so moving, I couldn’t help but to recall my own experience and relate to the magnitude of the situation. Melisandre, the priestess who brought Snow back from the dead through prayer, and who was grappling with her religion and the existence of her god after her own personal tragedy, looked upon him in disbelief and reverence. The inevitable question followed: “What did you see on the other side?” His response was chilling. “Nothing.”

Once I was given pain medication to ease my suffering, my brain was able to reflect on the event of my death. I didn’t even remember it. There was nothing on the other side. There wasn’t even an “other side.” There was no tunnel. There was no bright light. There were no angels or family members greeting me at the entrance. And there were no burning flames awaiting my eternal damnation either, a concept, to which I never subscribed anyway. But as a devout Jew, I was devastated. Like Snow, I saw nothing, and it was deeply troubling. Was it all a fraud? Is there really no world to come? Is this all there is to our existence – just one tragedy after the next?

Ser Davos urges Snow to get back up and keep fighting – that there was a reason for him coming back. Again Snow responds in such a profound and human way. He says “But I failed,” referring to the circumstances, which led to his murder. (Allowing refugees to immigrate to Westeros in flight from an army of the dead, ironically an issue our world finds itself in today with ISIL, Assad and the Syrian refugees). And Davos gives a life lesson, to which we should all follow. “Yes. You failed. Go out and fail again.”

I also felt as though my life had become an utter failure, due to such severe chronic illness. The idea of continuing to fight for a life, that, by any measure, didn’t seem worth living. I felt as though if my body could fail and betray me so awfully, what was the point of fighting to survive and keep going? I wrestled with the idea of requesting a DNR and taking me off the ventilator. But ultimately the human spirit wishes to survive and stay alive, potentially because our subconscious knows that this life is all we have. It is only when we realize that life is one tragedy after the next that we can truly live. 

Snow, like me, decided to move forward, and went out to see his loyal men, many of whom had been refugees, who owed him their lives. They stared at him in shock and disbelief, believing that, maybe, he was a god if he could come back from the dead. His closest friend in the Night’s Watch, Dolorous Ed, instinctively embraced Snow in perfect gratitude. He asked, “Is that really you?” And Snow assured him it was, paused and then said, “At least I think so.”

His inability to confirm that his present self was the same as that of the past is an integral and painful emotional aspect of coming back from seeing nothing after death. It changes you. You will never be the same person again. My death or near-death experience caused the greatest religious crisis and doubt I’d ever known. Having gone through so much suffering in the past, I questioned how God could allow this to happen to someone, who dedicated her life to God’s commandments or, worse, permit travesties like the Holocaust to occur. But this experience shook me to my core and forever changed me. 

I began to embrace what my rational mind had been telling me for years: there is no god. There, likely, was no thunder-like sounding burning bush, which legislated commandments, by which the Jews should live. In a way, the idea that God did not exist gave me some spiritual relief, because I released the anger and resentment I had for God for allowing my suffering to persist. If He didn’t exist, it meant that He didn’t hate me or was apathetic to my plight. But my soul continued to pull me to the belief in a higher power and an after life. I kept telling myself that maybe I hadn’t been dead for long enough to cross over – that maybe I was still alive, but undetectably so. 

I ultimately decided that God’s existence was irrelevant to me holding tightly to my faith. For me, Judaism is about keeping traditions, connecting to our ancestors from 5,000 years ago, surviving in the face of tremendous persecution and following a strict moral code. It is about being an example and a light unto the world. It is about doing good deeds, in hopes, but without the expectation, of positive energy returning. 

All religions were created for this purpose. We are human, and, thus, we fail ourselves and others through our own flaws, just as Jon Snow did. Our religions simply give us a moral code, by which to live and to treat others. Otherwise, we would be no better, if not worse, than animals. And they give us great purpose in life, when, in times of darkness, we are unable to find it. That purpose, of course, is to treat others the way we would hope to be treated. It is a simple concept but a difficult one in practice. That purpose is fulfilled, regardless of whether a supernatural being exists to realize it or not. It is for us to realize and pursue, whether we call God “Jesus” “HaShem” or “Allah.” And when we do realize this purpose, we can rest assured that when it is time to leave this world, death will be a peaceful release of our soul. And our memory and traditions will live on with those we leave behind.