“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. 

Antisemitism, the American Ideology of Shirking Responsibility and the Possible Link to the Rise of Donald Trump

Last week, a friend posted on Facebook that Bernie Sanders won Indiana’s primary. I commented that, like Jon Snow on Game of Thrones, Bernie was back from the dead! It was Holocaust Remembrance Day, and my Hebrew name and profile picture of the Israeli flag in the background of the arm of an elderly Holocaust surviver, tattoo depicted, grasping tightly a toddler’s hand, gave me away as a Jew and a proud dual Israeli citizen. A woman soon replied to my comment by calling me a “f**ktard” and saying I should be one of the first to “go in the ovens” and followed it with: “#DonaldTrumpBringOnTheOvens.”  
I was shocked, to say the least, but not simply due to the graphic nature of her comment. The rise of antisemitism has become pervasive this election cycle and from the unsuspecting candidates’ supporters: Bernie Sanders, a Jew himself, and Donald Trump, whose daughter, son-in-law and grandchildren are observant Jews. At a speech given in Harlem, an audience member asked Sanders about the Jews who “control the media and banking industry.” An elderly German immigrant supporting Trump at a Chicago rally gave the “Heil Hitler” salute to a protester, and another, at a later rally, who told a protester to “Go back to Auschwitz!”

 Disturbed by these acts of antisemitism, I decided that it was a few bad apples reported, meant to smear Trump as the modern-day Hitler, the comparison of which offends me because it diminishes what holocaust victims endured. So, I dismissed it and honored Holocaust Remembrance Day by posting an article about the 250,000 disabled lives lost in the holocaust, to remind the world that the holocaust was not about religion but about ethnic and genetic cleansing.

A few days later, in honor of the upcoming Israeli Independence Day, I posted a video on little-known facts about the young state of Israel, referring to it as “the holy land” as so many Jews and Christians do. The video succinctly listed facts, from Israel being the birthplace of life-changing medical and communication technologies to it being top ten in the world for beautiful women. Before there was even enough time to have watched the video after, an old high school classmate of mine, who is African-American and supporting Donald Trump, commented, asking me why it’s called the holy land when it’s only existed for 70 years and from where the name Israel came. Despite having given me prior inclination that he harbored antisemitic animosity, I decided to respond in an effort to educate him on the religious and historical foundations of the names. I quickly learned that he was trying to set me up to delegitimize the Jewish claim to the state of Israel and smear the Jewish people with typical antisemetic defamation. 

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The Common Lies of Antisemitism:

Some of his lies, and these are direct quotes:

1. “Why aren’t the Ethiopians and African Hebrew not being recognized and not allowed in the state of isreal?” Note that he didn’t ask, “Are the Ethopians being recognized?” No, he cited a FALSEHOOD and asked WHY that falsehood was happening. Israel has rescued every Ethiopian Jew from persecution, even air lifting them to safety, and has granted them full citizenship to Israel and cherishes them to no end. They are some of the kindest and most wonderful people you could meet. I helped them learn to pray in synagogue as new immigrants with very little knowledge of the religion, for which they kept traditions for generations. 

2. “Yes they have only possessed the land for roughly 70 years…There is no physical historic proof of their true existence in that area.” THIS IS FALSE. There are actual artifacts – dated by science – carbon dating – with Aramaic and HEBREW writings on them – that prove that the land now known as Israel was populated by Jews/Hebrews as many as 5,000 years ago. That goes without mentioning the meticulous records of the ROMAN people from at least 2100 years ago, again, detailing the Jews living in the area now known as Israel. In fact, the name “Palestine” is a result of the Jewish-Roman wars (which took place in the years 66-135 CE). After the war ended, the then-Roman emperor, Hadrian, renamed the land “Syria Palaestina” in an attempt to erase the historical ties of the Jews to the land. I guess it worked rather well, huh?

3. “Are you aware of the Zionist movement that began in 1921?” Zionism, as a movement, has been around since the 1800s when antisemitism was on the rise in Europe and Russia with tragedies like the pogroms, making Jews in the region, rightly so, feeling unsafe, only foreshadowing to the Holocaust.

4. “How did the Jews end up in Germany and not anywhere else?” Again, he didn’t say “DID the Jews end up in Germany and not anywhere else?” No, he asked a question of “HOW” this thing happened, when this “THING” in question is a FALSEHOOD. The Jews disbursed across much of the globe as a result of the Diaspora. Jews ended up living throughout Europe, the Mediterranean, and even Asia, constantly seeking refuge from persecution, giving us the name “wandering Jews.”

5. “The holocaust is Soley revolved around the Jews and no one else.” Again, completely false. Jews make great efforts to remind people that ELEVEN MILLION PEOPLE were killed in the Holocaust – SIX MILLION OF WHICH were Jews. Holocaust museums across the world recognize the Polish, disabled, gypsy, gay and black victims of the holocaust. The biggest holocaust museum in the world, Yad Vashem, in Israel goes further by recognizing the righteous Gentiles, who risked their lives to save potential victims of genocide.

6. “When these people (the other minorities) talk about it and bring it up, no one listens because these people don’t have the same power and wealth as the Jews.” And this is where it really became offensive. WEALTH AND POWER? Are you kidding me? Jews make up less than two-tenths of one percent of the WORLD population. We were stripped of EVERYTHING in the holocaust, down to our hair and teeth. We continue to be persecuted, murdered, made fun of, slandered, and used as scapegoats every single day. How does that translate to wealth and power? 

7. “I’m not claiming Jews were responsible for every bad thing in this world, but all parties go hand in hand.” The implication is clear with the word “but” here. Here’s how this translates: “I’m not saying I’m anti-Semitic and the Jews are responsible for all their persecution, BUT…”

8. “[the] majority of media is controlled by Jews.” And he points to an Internet link of SEVEN jews who are CEOs (not company share-holders or owners) who are Jewish in Hollywood and television, none of which are news sources that have any control over how and what news is disbursed. 

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The Cause:

The reason for his resentment and hatred became clear, however, in his arguments that came next. He began bringing up all the atrocities African slaves and their descendants endured, particularly in the United States. They SHOULD be in our conversations and historical textbooks far, far more than they are. I firmly believe our greatest blemish that our country suffers from today is its refusal to properly recognize and memorialize African slavery, segregation and the terrorism of the KKK, who lynched and bombed so many black Americans, white Catholics, Jews and southern liberals. I have been a champion in civil rights, both as an advocate and as an attorney at the Innocence Project, which, predominantly, obtains exonerations for prisons of color with the use of DNA evidence. (As a side note, Jews have always been a part of the fight for civil rights in the United States, even when many black activists didn’t want us joining their movement). I would never insinuate that black slavery and segregation were anything less egregious than they were. 

He continued with his anger for the fact that Africans lost their ancient language, culture and traditions and stated this was not so for the Jews, evidenced by the fact that we still have Hebrew and our ancient traditions. Thus, African slaves endured worse atrocities than the Jews. First, why is it even a competition? But regardless, again, this is another falsehood. 

Jews were forcibly converted all throughout the Crusades, Hebrew became a dead language for hundreds of years, Europeans and Russians burned our Torah scrolls, religious texts and synagogues in incidents like Krystal Nacht. And Jewish women were raped by our persecutors since at least the third century, forcing the rabbis to change Jewish heritage from patrilineal to matrilineal, because our fathers, so often, could not be determined. Hebrew was revived by one of Israel’s founding fathers, Ben Yehuda, when Israel was created. Lost and forgotten words had to be borrowed from English, French and Arabic. And every Jewish immigrant and their children forced themselves to learn and speak only Hebrew, despite a natural inclination to revert back to our mother tongues, from whichever part of Diaspora we came. 

The ONLY reason why Jews have survived all this prosecution and come out with our traditions, religion and original language is because we went to great lengths to: only inter-marry; write down and preserve every oral tradition we had for fear our persecutors killed too many of us to sufficiently pass it down orally; hide our identities; forego circumcision; secretly keep tradition; hold prayer services where we blow the shofar at specific covert locations at safer times of the day, less likely to be detected; and fled practically every country we’ve lived as refugees. 

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Shirking Responsibility: 

He concluded that slavery and segregation was the reason why he and the black community have failed to make notable progress ever since these times (he does not recognize Obama’s achievement because he isn’t a descendant of slavery) and suffer from systemic racism. I don’t deny the existence of systemic racism and our need to eliminate racism in our criminal justice system and public schools. I strongly support ending this racist war on drugs and the disintegration of our intercity schools. But he went further to say that I could never possibly understand growing up in poverty as a minority in the south from a broken family. And that, as a result, is the only reason why I was able to get a BBA and JD from an elite private university as opposed to him who couldn’t. 

This only demonstrates the profound misunderstanding blacks and America have about white poverty, much less the intersectionality of disability. I was born to a single mother, who only had a GED, and ran away from home as a teenager. At the age of 3, I was diagnosed with a rare neuromuscular disease that was meant to kill me by the age of 5 and made me lose the ability to walk by the age of 11. My mother, out of desperation to provide for her disabled child, married a (non Jewish) abusive alcoholic, who beat my mother and me and often used food and money deprivation to control. There were times when she fled, but we then lived in total abject poverty with, at times, no heat in the winter or running water. 

Having the spirit of my Jewish ancestors, I refused to let my past and present struggles dictate my future. So I studied eight hours every day after school. I took every AP class the school offered. I joined every extra curricular activity I could and served as president of many. I practiced flute so diligently I was in a gifted youth symphony at 17 and made first chair at my university symphony my freshman year. I went to the public library and used the newly invented Internet to research how to go to and pay for college, which tests to take and which books by which I could study, because I couldn’t afford to take a prep course. 

I ended up graduating in the top ten of my class, going to a top ten university and paying for it all myself with scholarships, financial aid and student loans. His excuse for not going to college or doing that well in school was because his parents never told him college was an option, he didn’t know financial aid even existed, despite going to the same exact school I did, he never heard of the SATs, and no one in his community or family ever went to college. Essentially – ignorance and imitation. I recognize the fact that college is often considered unattainable among the poor, which is why I support free or heavily subsidized public college education. But I had the determination to break the pattern of generations of uneducated women and figure out how to accomplish it. He did not. 

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The Rise of Donald Trump:

Trump is telling a great deal of truth about the problems facing this country and the world. He points out the bad trade deals we’ve made, which have obliterated our manufacturing jobs. He identifies, when no one else will even admit, our problems with radical Islam. He discusses the real threat that ISIL poses, which Obama wrongly leads the American people to believe are just thugs on the back of trucks. (ISIL is heavily armed with tanks, grenade and missile launchers, and rockets. And they have organized government based on sharia law, from which they sanction the death penalty by beheading.) He points out correctly that our economy and unemployment are actually not as good as the GDP and unemployment figures would lead us to believe, due to an imbalanced distribution of wealth and high numbers of workers who have completely left the workforce. He accurately points out the “PC” pendulum has swung too far to the left where we don’t even call “radical Islam” by its name…where we are obsessed with how to refer to each minority – African-American or black? Disabled or person with a disability? Hispanic or latino? They or he and she? We are so afraid to say the wrong thing for fear of inadvertently being insensitive or discriminatory. 

Every successful con artist, however, tells 95% of the truth and the rest are malicious lies. Hitler pointed out the horrible state Germany was in after WWI and the humiliating treaty of Versailles. But rather than take responsibility for that mistake, he spread antisemitic defamation in his national campaign, professing as fact that Jews were the reason for Germany’s problems and controlled the media and banking industries. He later added to his campaign of hate that gypsies, disabled, blacks and homosexuals were ruining the master race, which birthed the “Final Solution” of extermination and/or sterilization. He focused on banning immigration, mass deportation of Jews and immigrants and forcing Jews to wear special identification. 

So, too, Trump blames all of the country’s and the world’s problems on someone else. He blames illegal aliens for taking American jobs when the jobs Americans have lost have been almost entirely due to globalization and outsourcing, of which Trump profited from greatly. He blames crime in this country on illegal immigrants, calling Mexican immigrants “criminals and rapers,” and Muslims committing terrorist attacks. However, native born citizens are TWICE as likely to commit crimes than legal and illegal immigrants, and from 9/11 to 2015, Muslim terrorist attacks have accounted for 0.02% of murders in this country and none have been by Muslim refugees. (Thanks to increased security and immigration screening adopted by the Israeli model) He blames global warming on the Chinese for inventing in a massive conspiracy theory. 

He proposes very few solutions to any of the issues he identifies, other than banning Muslim immigration, mass deportation of illegal immigrants, and making Muslims carry special identification. Sound familiar? In reality, the problems he identifies and about which his base is excited are due to an enormous amount of income inequality in this country caused by a rigged economy, set up by the oligarchy of big money lobbyists drafting our legislation for the benefit of the 1%. And issues like the creation and existence of ISIL are a direct result of our perpetual warfare in the Middle East and insistence on regime changes. 

Additionally, he blames all his personal issues on others. He blamed Fox News for being tough on him at the first debate because Megyn Kelly was on her period. He was called out for lying about seeing thousands of people cheering in the streets of NJ on 9/11 by a disabled journalist for the NYT, who he’s met multiple times and knows on a first name basis. Rather than admitting he lied, he implied that the journalist must also be intellectually disabled by saying “Now the poor guy, you gotta see this guy,” and then mocking him by curling his arms and hands similar to the reporter’s and flailing around like an idiot. He blamed his vile and misogynist posting of an unflattering picture of Heidi Cruz next to a nude picture of his third wife, Melania, an immigrant, on the fact that Ted Cruz started it.”

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Resolution:

The strength of a people is in its ability to remember their history, learn from their past, uniting and forming tightly woven communities, while admitting their mistakes and responsibility. This is how the Jewish people have survived despite the worst genocide this world has ever seen. Descendants of the holocaust look like the Bernie Sanders of the world, whose parents came here with nothing but the clothes on their backs, and who has become one of the last remaining candidates for POTUS. They do not blame the problems of today on the travesty of their ancestors but rather work toward forging a solution to the issues. 
Every minority who has, or continues, to endure persecution or discrimination (whether Jewish like me, or disabled like me, or black like my former classmate, or gay like my aunt) should unite within and between our groups and help each other when we need a hand. And we should all, minorities and majorities, find a solution to our problems and fight together to see them come to fruition. We shouldn’t resent one another because one group recovered from persecution or discrimination better or more quickly than the other has. And we shouldn’t scapegoat people like Jews, illegal immigrants or Muslims. 

The rise of antisemitism, xenophobia and the ideology of shirking responsibility is both the cause and a symptom of the rise of Trump. We must reject this notion that our problems are the fault of someone else. This mind frame is the very essence of radical Islam – that the problems of the Muslim people are due to the West and Israel – and white terrorists like Timothy McVey and Adam Lanza. Antisemitism is always the warning sign before major terrorist attacks: see France with the preliminaryattacks on the kosher market and synagogue later resulting in the larger Paris attacks. If we deny the rise of this mentality and fan the flames of seething resentment and hatred, we are likely to see, very soon, major terrorist attacks by white America and Islamists and major uprisings of violence on our homeland. 

Our first step is to admit that antisemitism is alive and well, as is racism and xenophobia. And the next should be to reject those beliefs, and those who dispel them, and work together on a solution. We must fight to “never again” repeat our ugly past. 

My Experience with Chronic Illness and Suicidal Ideation: Ode to Robin Williams

The room was dark, with only the bathroom light peeking through.  I rocked back and forth in the fetal position, paralyzed with the worst nausea imaginable.  No medicine could control the feeling of my insides becoming entangled and trying to become my outsides.  Every few minutes, I would break into a cold sweat, my stomach would contract and I would vomit up nothing but bile and the anti-nausea medications, finally getting moments of relief.  But, a minute later, the torment would begin again, and all I could think was, “I just want to die.”

“I could take all my Fentanyl (an opioid 100x stronger than morphine) patches and put them on.  Then, I could take all my dilaudid, vicodin, tramadol, clonapan, xanax, and marinol to overdose.  Take some phenergan so I don’t vomit, drink some milk to coat my stomach, and put a plastic bag over my head so I fade away from asphyxiation.”  I had it all planned out, but something kept me from doing it.  It was so hard to stay alive and suffer day in and day out, minute after minute, but taking my own life seemed like an even harder feat.  What if there was something better in the future.  Maybe this plague would end?

The eighth time I entered into sepsis in nine months, I thought this is God’s way of letting me die without making me do it myself.  I was tired…exhausted rather.  My fever was 104.  My heart rate lying down was 138 beats per minute.  My blood pressure was getting lower by the minute.  I was entering death.  I said to my mother, “It’s time, Mom.  I’m ready.”  She looked at me and stoically said, “c’mon, let’s get you to the hospital.”  

We arrived to the hospital, and once I got to the hospital, it was motzeh shabbat (after the sabbath), and I emailed my rabbi: “Rabbi Kelman:  I’m back in the hospital again with sepsis and c-diff (colostrim difficil colitis).  I’m just tired, and cannot bear to endure this anymore.  This is my eighth round of sepsis and fifth round of c-diff in nine months.  I’m ready to go on to the next life.  Am I permitted, halakhically (by jewish law) to decline life-saving treatment?”  

I hoped and prayed that he would just email back, “yes, you may,” but within seconds, my phone rang.  I was too tired and too weak to speak.  So I couldn’t answer, but in less than a minute, my mother’s phone rang, and it was my rabbi.   “Karen, please tell her to hold on.  If she needs, I will come down there myself and make sure she gets the healthcare she needs.  She will get through this.  Please beg her to take the medicine.  Things will improve.  I will get her through this personally.  I will fly down there myself if I have to.  She cannot die.  She is too precious.”

My mother delivered his words, and they brought tears to my eyes.  I was precious to someone.  Was enough to live through suffering?  I wasn’t sure yet.  I asked the doctor if they could just keep me comfortable and not give me the antibiotics I needed to stay alive.  The doctor said that it was always my choice, but, of course suggested to put a psychiatrist on my case.  Once my rabbi began getting doctors at duke involved in my case, I began to think there could be hope for my future, and, so, I agreed, temporarily to receive the antibiotics.

The first morning of my hospital stay, the doctors made their rounds and announced that they were going to, once again, put me on antibiotics for six weeks.  Antibiotics, my enemy.  The one thing that could make me even sicker and more nauseated than I was in my normal state.  “How many times do I have to get c-diff and go into septic shock before you let me get a fecal transplant?!!,” I yelled at the gastrointerologist.  The doctor was taken aback that this seemingly meek patient, hooked up to wires and tubes monitoring her heart and delivering IV drugs and fluids, could have so much gumption to yell.  She responded, “well, I think maybe we should try antibiotics one more time.”  To this, I responded, “well, then, I don’t want the antibiotics.  Take me off of them.  I wish to go comfortably.  I won’t be made to suffer even more than I do now.”  

She, thus, ordered the psychiatrist to come in.  “Are you depressed?”  Yes?  “Do you want to die?”  Yes.  “Do you contemplate suicide?”  Yes.  “Do you have weapons in your house?”  Yes.  “What kind of weapons?”  Guns.  Opioids.  “Are you safe in your home?”  Yes.  “I think we should put you on an antidepressant.”  Do what you have to do, but it’s not going to take away my suffering, my nausea, my cdiff, or my sepsis.  “No, it won’t, but it might make you feel a little more like living.”  If only I could believe you.

The next day the doctors did their rounds, and the gastrointerologist, who the day before I absconded, announced, “we’ve decided that you are a good candidate for a fecal transplant, and our brother hospital at the University performs them.  We aren’t approved by the FDA to perform them here.”  Ahhh, so that’s why they wouldn’t give me one all the previous times….business…money.

The hospital stabilized me until I was no longer septic and could keep down fluids and solids.  They discharged me with a new drug for nausea and a new drug for depression and an appointment to get a fecal transplant.  The transplant changed my life in many ways.  I felt like I was finally going to live again after only three days.  The nausea began to subside somewhat, and my bowels began to feel much less painful, but the depression continued nonetheless.

Living with chronic illness and having had endured septic shock eight times in nine months, ten surgical procedures, being hospitalized for six months over nine months, living in constant excruciating pain in my face, back and abdomen, and experiencing nausea, which was worse than any motion sickness you could imagine which never subsided, didn’t just disappear overnight.  

My health continues to improve with every day, but my mental health took quite a toll from the physical damage my body endured.  As a result of all the illness and pain, I developed Post Traumatic Stress Disorder, which for many months after the transplant, continued to make me suicidal, sometimes to the point of planning out the act.  

Chronic Illness or Terminal Illness, as in the case of Robin Williams, who had Parkinsons, doesn’t simply attack the body, but also infects the brain.  It envelops the brain with adrenaline causing the brain to store memories on the wrong side of the brain, making traumatic memories feel like they are persistently in the present.  And, it deprives the body of dopamine, making the mind and body depressed and suicidal, believing that death is better than life.  And, indeed, at that moment, the sentiment is true.

While, thank God, I no longer have suicidal ideations, suicide is not the easy way out or the cowardly thing to do.  I always felt like I was a coward because I never had the strength to take my own life.  It takes strong will, a weak body and an unsound mind to take one’s own life.  

I’m happy today that I did not take my own life or that I was unsuccessful in convincing a family member to help me in the act.  While it takes strength to commit suicide, I now know why it is so forbidden in all religions – because once you get to the other side of the suffering, the reward is that much sweeter.  But, if you perform an act reserved only for God, you’ll never taste the sweetness that is to come.

Disability Under and Misrepresented in the Media

19Kamibarker6.28.14It happens all the time: People shockingly tell me how “beautiful” I am.  Does that ever happen to you? The experience is so strange when it happens to me.  It must be my wheelchair.   Odd how that works. If you’re attractive and able-bodied, that’s nice. If you’re attractive and a person with a disability, that’s news. People with disabilities should look . . . well, disabled.

For years, people with disabilities were hidden from society. We were placed in nursing homes “for our own good.” Or we were forced to stay home for lack of rails and ramps anywhere else. But once the ADA was enacted in 1991, much changed. We left our houses, abandoned our nursing homes and escaped our special ed classrooms to join the world at large. But sadly, many of us are still regarded as curiosities.We’re long overdue for a change.

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Consider the way people with disabilities are portrayed in popular entertainment. Too often, we’re shown as child-like, uneducated or a bit “slow,” no matter what our malady. Or, going in the other direction, we’re cast as geeky nerds, savants more at home  with equations and computers than people. And almost always, we’re portrayed as asexual—people whose lives end at the waist. (And if we are to have sex, that introduces a whole new set of problems.)

 

Take “Artie,” for example, the paraplegic character in the popular television show, “Glee.” On one hand, I applaud the show’s creator, Ryan Murphy, for Artie’s inclusion, as disability ensemble characters are rare enough on television. But it does seem strange that he is played by an able bodied actor. Unlike the characters played by Sam Worthington in “Avatar” or Terry O’Quinn  in “Lost,” there’s no deeply compelling reason for Artie to leave his chair. As fine a job as Kevin McHale does in the role, it seems like a part that could have gone to an actor with a disability, like RJ Mitte, who has cerebral palsy and plays Junior in the award-winning series “Breaking Bad.”  Ryan Murphy should have casted Artie just as RJ Mitte was casted to show paraplegia in an accurate light.

 

Then, of course, there’s Artie’s character itself. Does he really have to be the only nerd in the glee club? Couldn’t someone besides the student with a mobility impairment have the honor of being the socially handicapped for a change?   The guy can’t seem to catch a break. In one episode, Artie gets set up on a prom date with—what else?—a  girl who is also wheelchair bound. Why?  Because society and the media are ignorant enough to think that this is a perfect match.  This is all very touching, especially as the show closes with our chair bound couple checking into a motel for some implied intimacy. Unfortunately, the show’s writers kind of miss the point here. How do two such people manage the deed? Trust me on this. Two paraplegics are not necessarily a match made in heaven. Someone needs to think these things through.  Think of the statement “the blind leading the blind” and you’ll understand why this is not a match made in heaven.

 

The well intentioned ought to do a little thinking in real life, too. I can’t tell you how many times utter strangers have come up to me offering to introduce me to “the perfect guy.” Why so “perfect?”  Most were in wheelchairs. Some were blind. One had been blown up in a terrorist attack and left with only half a face. Another was a creepy old grandfather, forty years my senior looking for, no exaggeration, “casual sex.” And another was a pedophile and fugitive who had violated parole and was looking for a new wife.  I cannot make this stuff up.

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Fortunately, people with disabilities are beginning to do better on television. Sometimes I even encounter characters whose disabilities prompt me to see a bit of myself in them. That’s encouraging.

 

“House” immediately springs to mind. Played knowingly by able-bodied Hugh Laurie, the irascible, brilliant, cranky and often downright nasty doctor gets about on a chronically painful leg whose nerves and muscles were mangled in a botched operation.   Though hobbled, House will not be stopped or even slowed, and deals with his disability using a cane, felonious fistfuls of Vicodin and lots and lots of attitude. He has his shortcomings (glaring faults, actually) which is why he has so many fans among people with disabilities. He’s not some idealized poster boy for people with disabilities, but a real living, breathing person (to whatever degree a television character can be). House is one of us and he is making it.

 

Then there is Robert David Hall, the actor who plays medical examiner Dr. Al Robbins, on “CSI.”  He may only be playing a doctor on television, but his disability is very real: Hall lost both legs in an accident in 1978. Nonetheless, he gets around just fine on his prosthetic legs—often without crutches—as so many amputees do.   Hall’s role is written such that the cast rarely cites, or even acknowledges, his disability.  He just “is,” and is treated just like anybody else by cast and audience alike.   The show’s producers deserve recognition for casting him, and its writers kudos for the way he is portrayed. A 26Kamibarker6.28.14disabled actor playing a disabled character . . . who leads a normal life. Imagine that.

 

The time has come (actually, it’s been here for a while) for people to set aside their expectations of how people with disabilities “should” act. Stereotypes do not benefit us or you. We are neither noble heroes rising above our infirmities, or pathetic wretches seeking sympathy. We’re just people trying to get by in the same world as you. But, this is the 21st Century, and popular perceptions are fueled by popular culture. Like it or not, we are what we see on television. Be informed by what you see, but also be aware. We, people with disabilities, are more like you than you think.

With Truth and Honesty Written Across Our Faces, We, Too, Are Beautiful

me baby

A chubby cheeked cherub, just three years old, entered the operating room, escorted by two nurses.  The nurses helped her onto the operating table and began fastening her to it.   After the toddler was secured with five straps, several more nurses entered the room.  The little girl had two to three nurses on each side of her and one at her head and another at her feet.  Soon thereafter, the surgeon entered the room.  Without even acknowledging the little baby, he lifted his scalpel, while the nurses held her down.  With no general or local anesthesia, so as to save money, the surgeon sliced into her chubby little legs, performing an open muscle biopsy.  The baby screamed in agony for what seemed like hours, while her mother was forced to listen in the adjacent room.

Very soon thereafter, a neurologist diagnosed the child with Werdnig Hoffman and gave her a death sentence of five years of age.  That little girl was me, and, today, at the age of 33, I have a three inch scar on my left leg and a deep psychological scar that will never fade.  However, I refused to believe the doctor’s diagnosis.  I was obstinate in declining help from anyone.  When I stopped walking, I walked on my knees until they were raw, rather than sitting in a wheelchair.  Once I had no choice but to be in a chair, I refused my mother’s help in transferring, dressing and all other life necessities.  Over time, the doctors continued to give me less and less severe diagnoses.  Eventually, I was diagnosed with Spinal Muscular Atrophy, type III, which has a normal life expectancy.   I willed myself to be independent and to live a long and fulfilling life, including going to top universities, being in the Charlotte Youth Symphony and first chair flute at my university, becoming a lawyer, and even living abroad, in Israel, for four years.  me.mom

Though my strong will and tenacity allowed me to be independent my entire life, I could not control the thoughts and actions of others.  People have run into walls staring at me, or have approached me on the sidewalk to ask ridiculous and offensive questions. Classmates have made fun of me. Employers have refused to hire me.  And, men have declined to date or marry me based upon my disability, for fear I would be a burden rather than an asset.  No amount of strong will can heal a broken heart.

People are shocked to see a beautiful woman in a chair, and, for that, I blame the media and lack of awareness.  For years, the disabled were hidden from society, placed in nursing homes or forced to stay in their home due to lack of accessibility.  Once the ADA was passed in 1991, America changed by allowing the disabled to enter society as equals to the able-bodied.  As we came out of our houses, nursing homes and forced special education classrooms and into the light of our beautiful country, the public was ignorant as to who we really are.

For years, the media has misrepresented us. Until very recently, the media never included disabled characters on television or film.  And, when they seldom did, they portrayed us as child-like, asexual, uneducated, deformed, dying, unattractive nerds.  This misrepresentation negatively shaped society’s opinion of us, right when we were finally given equal rights and the ability to enter the world and live life.  Even today, when we see disabled characters on television, they are almost always played by able-bodied actors and falsely portray the disabled community.

Society needs to see the truth about disability.  And, that is: We are beautiful.  We are intelligent and educated.  We are successful.  We are sarcastic and funny.  We are fashionistas.  We are sexual and desirable.  We are not a burden.  We are an asset.  We may use a wheelchair or have differently shaped bodies, but we are no different than the able-bodied.

There is no better way to show this than through the honorable position of Ms. Wheelchair North Carolina.  If I am given this honor, I hope to make the public aware of who we really are; to encourage television and film directors to have more disabled characters and actors; to make employers realize that we are just as capable, in some cases more so than the able-bodied population; to make politicians realize that we do get married, but are discouraged from doing so for fear of losing our benefits; and to demonstrate to society that we are no different than anyone else.

We should all remember the words of Eleanor Roosevelt, the wife of our only disabled President: “No matter how plain a woman may be, if truth and honesty are written across her face, she will be beautiful.”  Be true and honest to yourself, strive to be the most you can be, live a fulfilling life, and show the world that, despite our physical and psychological scars, as well as sometimes misshapen bodies, we, too, are beautiful.

rise above

Obamacare is Making America One Step Closer to Legitimately Being the Land of the Free and the Home of the Brave

IMG_2562It was a late spring evening in the holy city of Jerusalem. I was strong, despite my weakened body from muscular dystrophy, and proud, in spite of others’ misplaced pity.   The following morning, however, I awoke in what felt like a foreign body.   The breeze, which so gently brushed upon my cheeks the night before, struck the right side of my face like electric bolts of shocking stabbing pain.  I reached for my face in horror, but the tortured skin fiercely rejected my hand’s touch with the sensation of a scalding, buzzing iron and a sharpened saw, cutting into my jaw.

Enveloped in fear and torture, I retreated into a cocoon of despair and depression.  Weeks and months of my life passed by, but the condition, called trigeminal neuralgia, (also known as “the suicide disease” due to the high rate of suicide in patients) only worsened.  During the long hours of dreadful pain caused by daily, attacks, I took a plethora of medications and had a craniotomy in an attempt to rid myself of the pain.  But, with each failed attempt, I feared that trigeminal neuralgia would soon take my life.

Being an American citizen since birth, I knew that my only hope of receiving superior healthcare was to return to my home country.  There was but one major barrier – I had no health insurance in the states and hadn’t for several years.  Because I now had a few pre-existing conditions, my only hope for returning to the states was to find a job with health benefits.  My next barrier – America was suffering from the worst recession in history since the great depression, and the unemployment rate was at an all time high.

Finally, after several months, I was offered a job in my profession as a litigation attorney in New York City.  And, so, I returned to the land of the free and the home of the brave.  After only a few months of pushing my body through horrific levels of pain, while also trying cases and taking all-day depositions, my body finally collapsed and failed to thrive.  My internal organs began shutting down, and the pain was unbearable.

Within only a short period of time, I was forced to go on disability leave and receive COBRA health insurance benefits. Every month, my premiums were approximately $600.  Additionally, because I had to move in with my family in Charlotte, NC, every medical provider I saw and every hospitalization I had was out of network and cost me, cumulatively, around a quarter of a million dollars.  So much for the land of the free.

IMG_2215Last year, after a four month stent in the hospital, followed by several additional hospitalizations, altogether totaling six months, I finally was able to open the grandiose amount of medical bills and explanation of benefits I received during that time.  With each explanation of benefits I opened, the insurance company informed me that none of the services were covered, a direct contradiction to the agreed upon policy.  I was brave enough to fight for my life during those six months.  However, I lived in a country where, no matter how brave a person is, if ill, their spirit could never overcome the mounding medical bills I had or prevent them from succumbing to bankruptcy.  So much for the home of the brave.

The moment Obamacare was open for enrollment, I rushed to the healthcare.gov North Carolina exchange website.  Thousands upon thousands of Americans were eager to finally get health insurance, or, in my case, insurance with excellent coverage and benefits.  Due to the high demand and traffic on the website, it took me several weeks to enroll in an insurance policy.  But, once I did, my premiums were a third less expensive than my previous insurance, and I had superior coverage to any plan I had ever held in my life.

Last week, only six weeks into being insured by an Obamacare plan, I went to my local pharmacy to fill one of the 26 medications I am prescribed.  When my prescription was ready, I rummaged through my purse for my credit card.  However, she handed me the bag, wished me a great day and returned to her business, at no point requesting payment.  Bewildered, I looked down at the receipt and was shocked.  The receipt read, “Your insurance saved you $308.89.  Your responsibility is $0.”  I had already met my minuscule $500 deductible and $1,500 out-of-pocket expenses.  Now, with every visit to the pharmacy, lab or radiology department I visit, my co-insurance is NOTHING!

Unlike before, when my monthly disability checks went straight to paying medical bills, I can now use it for other life necessities, like food and shelter.  My health might be diminishing and struggling to repair itself.  But, as a result of Obamacare, my bank account is no longer diminishing, and I no longer have financial struggles in seeing medical providers.  Thanks to Obamacare, America feels one step closer to legitimately being the land of the free and home of the brave.