Tag: Alabama

Masculinity, Southern Gentlemen, and the Strange Story of Alabama’s First U.S. Senator, William Rufus DeVane King

Posted by nickdupree – May 7, 2013

OR John Kerry Should’ve Grown A Beard: The North-South Manliness Inversion

A Post That Cites Its Sources…with Footnotes!

As I mentioned in the preceding post, the Nick’s Crusade blog is a history blog too. I think delving into history can be very valuable, not just because the strange doglegs and twists in the American story—history NEVER progresses in a straight line—are infinitely interesting, but because we become better thinkers and citizens the more we understand our prologue, the previous generations, the prior struggles, and what we’ve gained and lost since.

One thing we’ve lost—though we have gained from its absence in many ways—is the whole concept of the elite 19th century Southern Gentleman, the image of the Southern aristocrat with smooth, un-calloused hands and clean-shaven plump faces, and the brutal slave-driving that made such lifestyles possible. A lot of insight into that old image can be gleaned from the strange story of William Rufus deVane King of Alabama (my home state).

Art by Nick Dupree: Unlucky 13th Vice president, William Rufus deVane King, served only 45 days before dying of tuberculosis. Only a few of the 45 days, his last days, were on American soil, as he returned from Cuba via Mobile, then died on his plantation near Selma. He is the only vice president from Alabama ever elected.

Art by Nick Dupree: Unlucky 13th Vice president, William Rufus deVane King, served only 45 days before dying of tuberculosis. Only a few of the 45 days, his last days, were on American soil, as he returned from Cuba via Mobile, then died on his plantation near Selma. He is the only vice president from Alabama ever elected.

William R. D. King——more typically referred to as just “William R. King”—was the first U.S. Senator from Alabama (alongside John Williams Walker, who was also sent to Washington—the state legislature electing two U.S. Senators per constitutional requirements—after Alabama was admitted to the Union in December 1819). King also played a major role getting Alabama statehood done, and helped write the constitution of Alabama, named the city of Selma “Selma” meaning “high seat” or “throne” in the 18th century Ossianic poem The Songs of Selma, and was president pro tem of the United States Senate, got into a Hamilton-Burr-style duel with Henry Clay,¹ and served as U.S. Minister to France and had other diplomatic posts in Naples and St. Petersburg, and was behind the writing and passage of the Compromise of 1850 and more. What’s odd is, he did all this while being…while being known by the public as super effeminate and flamboyant, and was re-elected again and again by the hardcore states’ righters in Montgomery (prior to the ratification of the 17th amendment in 1913, state legislatures elected U.S. Senators to represent their state).

I won’t say William R. D. King was gay, though it is very striking that, in a culture that almost never mentioned such things, contemporaries like Andrew Jackson publicly called him by derogatory names like “Miss Nancy,” and

Buchanan, 15th President of the United States (1857-1861) was also Minister to the UK (Court of St. James).

Buchanan, 15th President of the United States (1857-1861) was also Minister to the UK (Court of St. James).

powerful Tennessee Dem Aaron Brown (later appointed postmaster general under Buchanan) referred to him as “she” and “Aunt Fancy” and [Buchanan's] “better half.”² The Senators King and Buchanan were reported walking arm in arm around Washington, though that was common for men even in James Garfield‘s time 30 years later. The rumors of King wearing 18th century powdered wigs and stockings long after they’d been abandoned in the 19th century are false,³ but there was definitely a very intimate relationship with future-president James Buchanan, and something must have been unusual enough to’ve drawn derision at the time. Nelson from the Simpsons, famously pointing out someone deserving derision Buchanan was called “Mr. Fancy Pants” or “Granny Buck.”

Still, the serious historian demands a high standard of proof: the text document equivalent of “pics or it didn’t happen.” Though there is more material suggesting King was seen as gay than almost anyone else in the 19th century, it’d be unwise to say King was a homosexual with certainty. I agree with the James Buchanan entry in glbtq: An Encyclopedia of Gay, Lesbian, Bisexual, Transgender, and Queer Culture that:

In his The Invention of Heterosexuality Jonathan Ned Katz cautions against the application of contemporary terms regarding sexuality to other times and societies in which “[w]ays of ordering the sexes, genders, and sexualities have varied radically.” He further points out that in the “pre-Freudian world [of early-nineteenth-century America], love did not imply eros”–although neither, of course, was an erotic component excluded.⁴

As King’s effeminate manner is evident beyond a shadow of a doubt, I’ll ask a broader—and, I think, more interesting—question, on gender presentation widely-speaking: how is it that such an effeminate public figure got elected by the legislators in rough-and-tumble frontier Alabama?
The answer is, there was nothing odd about William R. D. King amidst the Southern slaver planter aristocracy of his generation. It only seems strange to us, seeing through the lens of the latter half of the 20th century and its mega-strict gender roles. In the antebellum South, the elite planter could be flamboyant, his body unmarked by any of the wear and tear associated with daily labor, his beardless, cherubic visage and opulent clothing a sign of plantation riches, heralding social status as much as signaling the success—and therefore rightness—of the Old South. That kind of presentation harkens back to the aristocratic plantation lifestyles of the 17th and 18th century colonies, when it was, if anything, MORE pronounced. The kind of luxurious appearance and elite manner King exemplified was not uncommon among antebellum aristocrats in cotton country, in fact, flaunting your aristocratic bona fides was cool.

The anti-slavery left, the free soil partisans of the north who were organizing into what would soon be called the Republican Party, had picked up on this. By the time Millard Fillmore—a northerner with pro-slavery sympathies—moved into the White House following President Taylor dying of dysentery in 1850, they had a name for his sort: doughfaces, an obvious allusion to the idle, beardless planter aristocracy.
The best explanation of masculinities of the 19th century and the politics of facial hair I’ve found, is in Adam Goodheart’s amazing book 1861:

It was no accident that Northerners who sympathized with slaveholders were called “doughfaces”: in the American context, beards connoted a certain frank and uncompromising authenticity. Nor was it a coincidence that “Honest Abe” began cultivating his famous beard as he prepared to take over the presidency from “Granny Buck.”⁵

Northern free-soilers began presenting themselves as everything opposed to those they framed as the effete, decadent planter class, or as they referred to them, “the slave party.” They cultivated an image marketed as everything opposite the idle, soft-handed, soft-faced rich Southern aristocrats, they were the candidates of rough-hewn common working men with beards! They [the first decades of Republican Party free soil candidates] were one of the Real ‘Merickens who crawled out of mama and into a log cabin, grew up ridin’ a blue ox and drinking hard cider, and as a man split rails with an axe in one hand while reading law with the other. In the case of Abraham Lincoln, this backstory was kind of true, and his 1860 presidential campaign leveraged that to. the. MAX. The Republican National Convention in Chicago that (unexpectedly) nominated Lincoln for president in 1860 was held in a massive, makeshift wooden “wigwam”—Chicago’s fire marshall didn’t get any sleep that week—and the crowd badgered Honest Abe to tell the convention his “clearing the land with an axe” story…again. The Fall campaign was almost singularly about the image of Lincoln “the rail-splitter,” and was used non-stop; I’m sure some folks didn’t even know his name, just knew “rail-splitter.” To focus on the frontiersmen ethos and related manliness, and all the subtle messages within that, while not mentioning free soil doctrine, abolition, or any of the issues currently boiling over was a brilliant stroke of campaigning genius, and stands out in political history.


Adam Goodheart’s 1861: The Civil War Awakening is the best, most quick-to-understand work of social history I’ve read to date, delving into what Americans lives were really like on the eve of the Civil War. It goes into the BIZARRE social arrangements of 1861 Washington, DC, where free blacks owned slaves, and in Goodheart’s descriptions, those slaves were better off than much of DC’s free black population, who were largely stuck below-subsistence-level in squalid shantytowns, and with no “owner” to vouch for them, they were “undocumented” in a way—my term—and had no real rights to move around in public spaces and were subjected to frequent stops and harassment by police. 1861 has a whole chapter on young James Garfield’s doings at the time, and the way passions were channeled into male friendships in his social circle since expressing emotions was quite circumscribed where women were concerned. I’d like to explore that more in another post.

What I discovered by looking back at William R. King vs. early Republican campaigns—and it’s exciting when you figure something out for the first time—is that the North and South have not only undergone a political transformation, there’s been a cultural inversion alongside it. First, the obvious political inversion. Look at the electoral map following Abraham Lincoln’s 1860 presidential run. The liberal “free soil” north is ruby red, Republican. The South, pro-slavery, is the Democratic Party “solid south,” and with the exception of the fracturing of the Democrats behind several Southern candidates in 1860, then a period of Republican military rule and Republican-elections, “Reconstruction,” the solid Democratic south stays together a remarkably long time, from Andrew Jackson to like… John Kennedy’s run in 1960… Kennedy loses significant votes to Nixon in the Deep South, then in 1972 ALL Southern states peel off—a huge change from the results of the ’68 presidential election just four years before, when the solid south voted for the Dem, Humphrey, and the former-Dem-then-Dem-again, George Wallace—and REALLY break in Nixon’s favor, what with his infamous “southern strategy” and a Dem challenger perceived as wimpy. ’72 clinched the end of realignment, sealed the deal. Ever since, the South has been Republican red, with Dixiecrats like Strom Thurmond and ex-Wallace supporters defecting to the GOP in droves and Lincoln’s states up north increasingly leaning Democratic; it’s a total inversion!

What I’ve realized is, it’s also a North-South inversion of the culture of masculinity. In short, northerners are framed as effete, wimpy, decadent, out-of-touch elites today, similar to the way northerners caricatured southerners in the first decades of Whig and Republican campaigns (1840-1870ish). Now, it’s southerners that seem to treasure uber-rigid common man masculinity, and William Rufus deVane King couldn’t get elected dog catcher in today’s Alabama; despite his great wealth, I doubt he could find a place in Alabama public life due to his…different gender presentation. Southerners of today expect a working man to run for office, someone manly and “like us,” the opposite of William R. King. Thomas Frank explored today’s Republican “backlash” against “elites” in his book What’s The Matter With Kansas. This “backlash” is far more determinative than people realize, and deserves much more examination.

John Kerry got the brunt of this backlash in the 2004 campaign, with Karl Rove using the words “effete, elite Massachusetts liberal!” every day. Kerry got Buchanan’ed! Today’s Republicans are as aware of Americans’ deep-seated resentment of “the idle rich” as their northern founders were!
John Kennedy did a modern version of the “Hard Cider Campaign” in 1960; you could call it the “high-ball glass and scotch campaign.” It worked. The “effete, elite Massachusetts liberal!” line was certainly attempted against Kennedy, but for the most part it failed to stick, and he won a majority of working class voters and held the bulk of the South. Kerry failed…failed BADLY to counter the “effete, wimpy, decadent, out-of-touch” frame employed against him. Maybe John Kerry should’ve tried some form of the Kennedy strategy. Maybe he should have gone full Abe, grown a beard and had the press film him chopping firewood.

What he tried instead, photos and videos of him “huntin” backfired terribly, making him look even more phony and out of touch.

Cartoon by Nick: 2004 Democratic presidential nominee John Kerry, huntin...he says "I too enjoy leisure time practicing as a huntist!"

Cartoon by Nick: 2004 Democratic presidential nominee John Kerry, huntin…he says “I too enjoy leisure time practicing as a huntist!”

Unfortunately, image matters and always has mattered in American politics. Today, it matters disproportionately, and 21st century Democratic candidates like John Kerry have been awful at it. He was completely unable to fight back against the opponent’s framing him as an elite, decadent aristocrat, just as King and Buchanan and other antebellum southern gentlemen were caricatured.

Southern politics and southern masculinity has shifted dramatically, and I wonder if we haven’t lost something important. I wonder if becoming much more rigid in gender expectations isn’t narrowing what’s possible in political life, excluding not just potential 21st century William Rufus Kings, but ANYONE who doesn’t look like a square, iron-jawed working man. We’ve narrowed potential in public life, and I think that’s always bad.

Nick

Footnotes

1. Clay “believed the Globe to be an infamous paper, and its chief editor an infamous man.” King responded that Blair’s character would “compare gloriously” to that of Clay. The Kentucky senator jumped to his feet and shouted, “That is false, it is a slanderous base and cowardly declaration and the senator knows it to be so.” King answered ominously, “Mr. President, I have no reply to make—none whatever. But Mr. Clay deserves a response.” King then wrote out a challenge to a duel and had another senator deliver it to Clay, who belatedly realized what trouble his hasty words had unleashed. As Clay and King selected seconds and prepared for the imminent encounter, the Senate sergeant at arms arrested both men and turned them over to a civil authority. Clay posted a five-thousand-dollar bond as assurance that he would keep the peace, “and particularly towards William R. King.” Each wanted the matter behind him, but King insisted on “an unequivocal apology.” On March 14, 1841, Clay apologized…
Senate Historical Office. “William Rufus King, 13th Vice President (1853).” Senate.gov. (accessed May 6, 2013).
2. p. 189: Hernandez, David. Broken Face in the Mirror: Crooks and Fallen Stars That Look Very Much Like Us. Dorrance Publishing, 2010. http://books.google.com/books?id=OJ-0nNPAisgC&pg=PA189 (accessed May 6, 2013).
3. “Vice President King is sometimes confused with [signer of the Constitution in 1787 and Federalist presidential candidate] Senator Rufus King of New York. This confusion with the first King explains the rumors that persist to this day of the latter King’s wearing of ribbons, scarves and powdered wigs long after they were in fashion. Vice President King always wore the contemporary styles of the early-to-mid-1800s and he never wore a wig.” pp 13-14: Stern, Milton. Harriet Lane, America’s First Lady. 2005. http://books.google.com/books?id=5B9ngDFT2vgC&pg=PA14 (accessed May 7, 2013).
4. Rapp, Linda. glbtq: An Encyclopedia of Gay, Lesbian, Bisexual, Transgender, and Queer Culture. Chicago, IL: glbtq, Inc., 2004. http://www.glbtq.com/social-sciences/buchanan_j,2.html (accessed May 6, 2013).
5. p. 113: Goodheart, Adam. 1861: The Civil War Awakening. New York, NY: Vintage Books, 2011. http://books.google.com/books?id=bCPbnsUPhB0C&pg=PA113

A Note on Robert Bork and the End of Busing as a Desegregation tool

Posted by nickdupree – April 9, 2013

It’s been a while since I blogged about racism, but this blog has a broader mission to shine a light on the concerns of unheard, marginalized groups everywhere, which is why, in the past, I’ve written about things as far-flung and diverse as an effort to fund safehouses for LGBT youth being hunted down by Islamist death squads in Iraq and the violence against raw food shops and consumers in California, where the government effectively acted as enforcers for big agribusiness, helping them shut down the competition.

As the new About page says:

This blog is a safe space, where I highlight unreported and under-reported issues effecting people with disabilities and other underrepresented groups and the U.S. as a whole.

I really want to give underreported and unreported stories some space. That is what I think the blogosphere should be, a megaphone for the people the news media ignore.

Under racism, in the past I’ve spotlighted the legacy of slavery and the Capitol building, an anti-Latino death squad who were ignored by the media even after killing a family, and more.

Recently, comments on C-SPAN’s BookTV sparked my interest, because Appellate Judge Frank Easterbrook said something very revealing. He talked about how he and then-solicitor general Robert Bork crafted the legal reasoning that now is the dominant precedent that prohibits or stifles desegregation across America. And no one noticed. Segregation and the laws around it deserve more discussion.

This is a clip I made of Judge Easterbrook’s comments, which reveal a history few know about (c-spanvideo.org allows you to make your own clips now!) During a discussion of Robert Bork’s last, posthumously published book “Saving Justice,” Frank Easterbrook reveals how he and Robert Bork’s reasoning that school segregation “by personal choice” is not a violation, though so inflammatory in the ’70s the DOJ ordered it shredded, is now the opinion affirmed by the Supreme Court.

Click here to see the clip (which, for some reason isn’t embeddable).

Even Robert Bork thought the anti-busing opinion should be shredded at the time; according to Judge Easterbrook, Bork was worried it would empower violent bigots in the ongoing Boston busing conflict.

Somehow, this opinion was unearthed from the bowels of hell and embraced by the Supreme Court. The Supreme Court has again and again affirmed this radical-right reasoning that school segregation doesn’t hurt anyone and is just fine as long as the state isn’t forcing it and it’s “segregation by private choice.”

The nail in the coffin for desegregation seemed to come from Bork and Easterbrook’s brief.

With my own eyes, I’ve seen the retrenchment of segregation in the South. My hometown of Mobile, Alabama was once a good example of relative-racial harmony; Mobile boasts it was the only major city in the Deep South never to suffer race riots. Leaders on both sides of this peaceful, heavily Catholic city made negotiation work instead of the conflagration everywhere else. My college, Spring Hill College (“The Jesuit College of the South”) was praised in MLK’s Letter from a Birmingham Jail for being the first university in the Deep South to integrate, in 1954. When the KKK tried to burn a cross (highly blasphemous) on campus in response, students chased them off with rocks and baseball bats, a couple of Jesuit priests in tow. We showed how possible integration could be; we showed that not everybody in the Deep South supported the Klan. (Also, people tend to see the world through the lens of their hometown values and upbringing, and this post gives you insight into mine, where I am coming from).

It’s been sad watching my hometown leave behind their powerful legacy of peaceful desegregation without discussion, following the other Southern cities. Accelerating subsequent to the 1991 Supreme Court ruling Board of Education v. Dowell, which—in a 5-3 decision—lifted integration-busing court orders (Thurgood Marshall, on the verge of retiring, wrote the dissenting opinion) busing has been jettisoned as a relic, and the busing-integrated high school I went to, John Shaw High School, was shuttered.

There’s been a retrenchment of racial segregation throughout the South—and elsewhere too (see this article about Omaha dividing into separate segregated school districts at the request of the black minority). The reasons for re-segregation are complex and difficult to talk about; it’s clear that both communities are fueling this trend. Black communities may dislike sending children on hour-long bus rides, among other things, while white communities may want to wall off their children from the kinds of things going on in the black ghettos (which may or may not be a true perception, because in MY high school, the white kids were the ones dealing drugs).

Some relevant sources:
Justices Rule Mandatory Busing May Go, Even if Races Stay Apart – New York Times 1991 (reported on the announcement of the Board of Education v. Dowell ruling)
Schools Resegregate, Study Finds – New York Times 2003
Fighting School Resegregation – Editorial – NYTimes.com 2003
and a ton more sources are available on the Google

According to a 2003 Harvard study, following the flurry of court rulings against busing, black students were less integrated at the turn of the millennium than in 1970, “a year before the Supreme Court authorized the busing that became a primary way of integrating schools.” These trends have accelerated unabated since 2000. In many of these segregated communities, a kid has a better chance of winning the lottery than meeting a person of different ethnic background than them. It looks as though our broken judiciary will allow entire states to re-segregate, decades of progress down the tubes, because we’ve made the democratic choice for that kind of society. And in a democracy we should be able to choose that; but let’s not be blind to the destructive potential of segregation: the damage to the children socially and emotionally, the distancing of racial communities, the retrenchment of a U.S. caste system. A growing body of social science research is reaching the conclusion that school desegregation should get some credit for the drop in urban crime in the ’90s and ’00s, and that the rise in crime in recent years can be partly blamed on re-segregation (Source: Slate: Resegregation has led to a spike in violent crime).
We need to be honest about the prejudice, the pre-judging we’re all capable of, and try and do what’s right. Separate but equal can never be equal, and invites a myriad of problems.

My younger brother Jamie, who’s also on a vent, said of visiting one high school, “I felt like the little white chunk no one wants at the bottom of the can o’ pork ‘n beans.”
That isn’t good, but it is the reality in the 2000s and 2010s….

Mobile has its first black mayor now, and peace and negotiation is still the order of the day for the most part, but in places like Atlanta and New Orleans the intensifying of segregation has communities on both sides simmering with racial tension. Racial violence in Atlanta isn’t yet “only of interest to historians.” Economic and social segregation in New Orleans, not to mention the strict geographic segregation—so extreme you wouldn’t believe it—has racial discord at all time highs. Hurricane Katrina (which I barely survived in Mobile) not only devastated New Orleans bow to stern, it opened up a LOT of old wounds. Surprisingly virulent racist memes have come back, big time; too often, Louisiana whites have welcomed that stuff back with open arms.

Libertarians like Ron Paul are right to point out that laws alone can’t turn hearts and minds around, and that’s an important point, but laws provide enforcement of equal opportunity against the worst injustices. Laws that have dis-empowered the most egregious offenders, especially vis a vis voting rights and equality under the law, have driven most of the progress we’ve seen.
Bork and Easterbrook’s brief provide a window into how we got to where we are. And where we are, and the legal opinions behind it, deserve re-examination.

Nick

Chris Week: Ninth Anniversary—RIP Chris

Posted by nickdupree – March 7, 2013

I’ve been thinking about my friend Chris a lot this week, especially in the days preceding and following March 4th, when the tragedy that took him happened.

When I was little, Chris was the bigger kid, both in age (four years older) and heft (kids with Duchenne Muscular Dystrophy—DMD, which I don’t have—tend to be heavy, seeming to keep their baby fat, plus, until the preteen years). He was the poster child for the Mobile MDA (Muscular Dystrophy Association). I’ve gone in-depth on this blog about what it was like being in the Mobile MDA in the 1980s before. There was really a sense that “I want to be involved in the MDA, I want my kids to be involved, and raise money for the MDA, so then when my child is older and in full decline and we need all the help we can get, the resources will be there.” Parent involvement in the MDA really was seen as an investment in your children’s future, so the feeling of betrayal was intense when the MDA of Mobile (transformed and unrecognizable as the community-engaged organization it was in 1980s) didn’t help Chris in his fight for survival or even note his death.

Chris and I really became friends as young adults, when he would hang out in my chat room (Disabled Teens Support Group) that I had set up as a safe space for people like us to share the unique challenges facing young people with disabilities. I ran the group on the Delphi Forums site, which was a very, very Web 1.0 platform that you could run chat rooms and message boards on. It was a clunky, antiquated tool, even at the time, and perhaps some of the language (“Disabled Teens”) was antiquated too, but we got a lot out of it. Chris and I shared a deep context of what it means to be a young, vent-dependent man in South Alabama, the very real challenges, threats, and pain involved, and a lot of those basics could go unsaid; that, in-and-of-itself, was very freeing. He was also the only other vent-dependent friend I had outside the home that was close enough (South Mobile) to see in person. I was at one of his birthday parties; an old guy in the neighborhood called the police about the loud rock music.

Chris had a mohawk, so dark red it was almost black. He loved metal. Especially metal performed by scantily-clad women. For him, you’re either 100% extreme, balls out, hardcore, or you’re wimpy (though he used much harsher terms than wimpy). So, he tended to see me as soft and decidedly un-metal, though he developed a deep respect for my work overturning Alabama Medicaid’s age 21 cut-off, or as he put it, “kicking ass.”

Chris, with his mohawk and gaunt, angular appearance, looked metal; he’d have been perfect for the glossy cover of a metal album. And it all fit. It fit as one of the only reasonable reactions to the unreasonable policy realities in the Deep South that yank all support and shove people with disabilities and their families to tiptoe a high-wire without a safety net. And it definitely fit his hardcore words, hardcore music, hardcore aesthetic. What’s more hardcore than life on a ventilator? What’s more extreme, more on the razor’s edge, than being in your face, rocking all over Mobile County, despite being on life support? And what’s more American than saying “f**k nature, the hell with the odds, I’m here, I’m on a vent, and I won’t give up.” To me and his friends, Chris was this amazing, punk rock “only in America” kind of figure. His death was a horrible loss.

Chris was also an incredible writer; I’ve never known anyone as good as him when it comes to short fiction. He once shared one of his short stories with me, about a Viking “berzerker” warrior. His chatting with my group on the Delphi Forums, led to him participating in other Delphi communities, RPG groups, where what he was really doing was writing a novel with others. Brilliant writing!! I wish it could’ve been properly compiled and published at that time.
Though this writing on Delphi, he met a young woman in Northern Alabama who he grew to love. Chris never let anyone neuter or infantilize him for a second; his passion for women was as hardcore as everything else about him. It’s awful that he never met this girl he loved and that overall, he never could get in-person reciprocal feeling from Alabama’s female half. Like me, he ultimately got the cold shoulder from every girl he met in Alabama.
In an email about sharing his feelings with the aforementioned girl, he wrote: “If you have a dream, or something you need to say, or to let out, don’t hesitate, don’t let go of that opportunity, it may never come again.”

The only extant piece on the web about Chris’ death is this, from Inclusion Daily News: Alabama Medicaid Policy Blamed For Friend’s Death (thank you Dave Reynolds for keeping this article available nine years in; I will keep it accessible from the front page sidebar of this blog in perpetuity.) Chris’ goals in life were like anyone’s, to survive, find his niche, and thrive. His parents did everything humanly possible to help him keep going, in sports terms, “they left it all on the field.” But they were put in an impossible situation by Alabama Medicaid’s policies, which ended most in-home care for recipients at age 21, knocking them down to about 12 hours of nursing care per week, apparently with the idea that the family could provide coverage without sleep for the rest of the week 24 hours a day. No human being can do that forever, though Chris’ family and friends tried, and kept it going for five years without Chris even being hospitalized. But it’s one of those probability things, Medicaid put them in a situation without care, where it is likely that eventually, a ventilator tube disconnection event would coincide with a time his mom went to the store and only one parent was present, and too asleep to respond given the exhaustion of the care every day. That tube disconnection meant… suffocating until brain dead. His parents shouldn’t blame themselves for the impossible situation Alabama Medicaid put them in. They never should’ve been thrust into that situation; if he weren’t in Alabama, it’s likely he would’ve received some care hours each day that would have enabled his mom to leave the home for supplies with peace of mind.

There’s a lot of blame to go around, but I think Alabama Medicaid should get the brunt of it for “just following orders,” mailing out termination notices with one line, “PDN (private duty nursing) to terminate after [xx.xx.xxxx]” (the person’s 21st birthday) and phoning nursing agencies to ensure they know no hours can be billed after that date, without ever ruminating on the barbarism of their actions or considering solutions. Part of the blame goes to the several Alabama politicians who ignored numerous pleas for help from Chris and his family. And, of course, the MDA ignored their cries for help when they could’ve helped Chris’ parents organize daily volunteers, or assisted somehow, large or small.
And I feel like part of the blame goes to me. Chris died after my “victory” over the 21 cut-off in February 2003, which set up a new program for vent-dependent, or in their terms, “technology assisted,” Alabamians who are “aging out” at 21. This program made the 21 cut-off, at least where ventboys are concerned, a thing of the past in Alabama, making my home state an island of relative sanity in a sea of Deep South states (including Florida) that continue to essentially shove their most vulnerable off a cliff just for turning 21, even now in 2013. But the “technology assisted” waiver I got started had no provision for grandfathering in people like Chris, cut off five years prior to the advent of the TA waiver. I never felt less victorious than the day Chris reacted to the fact that my “victory” meant no change for him. I made sure local news channel 15 knew about Chris’ situation; they did a significant feature on him about six months before his death. But I feel guilt that I didn’t launch a national effort for awareness and I didn’t push harder to involve lawyers. I also don’t understand the premise that I survive and he doesn’t.

I need to get back in the fight. Unless I’m actively fighting so similar tragedies don’t happen again, I don’t feel like I’ve found my niche. For 2013, this book I’m writing, this memoir/exposé, is like the “tip of the spear” of my new campaign on Medicaid 21-cut-off, with the focus on vent users. The vent-dependent population can’t afford to be invisible anymore.

Nick

Mitt Romney: Can You Help Us, Mr. Fix It? (Part 1)

Posted by nickdupree – February 10, 2012

Editorial cartoon: Richie Rich, the Monopoly Man, the Simpsons' Mr. Burns and Scrooge McDuck tell Mitt Romney he's embarrassing the rich 'you're making us look bad'

 

So, there’s been a dust up over Mitt Romney’s “I’m not concerned about the very poor” comments on CNN.  A lot of the blogosphere is mindlessly blasting this quote sans context, and the TV news even worse, so Team Romney isn’t wrong to protest how this has been “taken out of context.”  Cable news has been bad.  So bad: stopping short of breaking it down into a few syllables and grunts between prescription drug advertisements.

But, to be honest, Romney’s answer is even worse when examined in its full context and nuance.

Here’s Mitt Romney’s “I’m not concerned about the very poor, I’m not concerned about the very rich, I’m campaigning for Americans in the middle” the relevant part of his interview with Soledad O’Brien, with all the context and nuance he gave CNN:

ROMNEY: You know, just let people get to know you better. The nice thing about what happened here in Florida is I got a chance to go across the state, meet with people. They heard what I am concerned about. They understand how I will be able to make things better.

I think people want someone who not just throws an incendiary bomb from time to time but someone who actually knows how it takes to improve their life, get home values rising again, to get jobs again in this country, and to make sure when soldiers come home they have a job waiting for them. And make sure people who are retired don’t have to worry about what’s going to happen at the end of the week.

This is a time people are worried. They’re frightened. They want someone who they have confidence in. And I believe I will be able to instill that confidence in the American people. And, by the way, I’m in this race because I care about Americans. I’m not concerned about the very poor. We have a safety net there. If it needs repair, I’ll fix it.

I’m not concerned about the very rich, they’re doing just fine. I’m concerned about the very heart of the America, the 90, 95 percent of Americans who right now are struggling and I’ll continue to take that message across the nation.

O’BRIEN: All right. So I know I said last question, but I’ve got to ask you. You just said I’m not concerned about the very poor because they have a safety net. And I think there are lots of very poor Americans who are struggling who would say that sounds odd. Can you explain that?

ROMNEY: Well, you had to finish the sentence, Soledad. I said I’m not concerned about the very poor that have the safety net, but if it has holes in it, I will repair them.

On CNN February 1st, Mitt Romney included a tangent about

O’BRIEN: Got it. OK.

ROMNEY: The – the challenge right now – we will hear from the Democrat Party the plight of the poor, and – and there’s no question, it’s not good being poor and we have a safety net to help those that are very poor.

But my campaign is focused on middle income Americans. My campaign – you

can choose where to focus. You can focus on the rich. That’s not my focus. You can focus on the very poor. That’s not my focus.

My focus is on middle income Americans, retirees living on social security, people who cannot find work, folks who have kids that are getting ready to go to college. That – these are the people who’ve been most badly hurt during the Obama years.

We have a very ample safety net, and we can talk about whether it needs to be strengthened or whether there are holes in it. But we have food stamps, we have

Medicaid, we have housing vouchers, we have programs to help the poor. But the middle income Americans, they’re the folks that are really struggling right now, and they need someone that can help get this economy going for them.

O’BRIEN: All right. Mitt Romney, congratulations to you on your big victory last night. Thanks for talking with us. appreciate it.

CNN, Transcript of Soledad O’Brien interview with Mitt Romney, Feb. 1, 2012

For me, the “not concerned about the very poor” comment is one of the least disturbing parts of his answer here.

First, it’s what he said immediately following that: “We have a safety net there. If it needs repair, I’ll fix it.” That anyone who has been a leader in government can still essentially wonder aloud IF the safety net needs repair astonishes me. After all the tragic deaths (like the 12-year-old boy who died for lack of a dentist to simply pull a tooth) and horrible suffering that’s been well-documented and displayed, how can anyone not know our safety net needs a major shoring up if not—my position—a total rethinking and restructuring?

To quote from a 2007 blog post I wrote:

For those with severe disabilities dependent on Medicaid, the Republican cuts from 1995-2007 have had horrible consequences. I’ve had to fight like hell to survive. In 1996 in Alabama, Medicaid started gutting EPSDT (the federally-mandated program providing nursing care for those in need) and sending out termination notices to families in the mail. Then in 1999-2001 we had more aggressive cuts. They changed the rules so it’s only a temporary program to train caregivers to stay with their child 24/7, and they keep repeating that it is not the government’s role to “babysit” your child at all (even if your child is on life support and routinely coding). And now it is 2007 and Alabama barely funds it at all. We’ve almost been rolled back into the 1970s level.
I’ve had friends die. I’m sick of tolerating this evil like it is a valid policy position. It is in no way valid nor deserving of our deference and patience. It is nothing but immoral…
…

I have seen too much suffering and death because of inadequate supports and invisible safety nets and I am frakking traumatized that people are still pushing this destructive right-wing mythology that if we chip away at government funding even further, that this will magically increase services. It has been tried for years and has failed every time.

Excerpted from my post Vigorously Insisting On A More Perfect Union: Fighting Cuts, Demanding Universal Health Care | Nick’s Crusade
This “Demanding Universal Health Care” post was published by the Greenhaven Press imprint of Gale Publishing in the 2008 edition of Opposing Viewpoints: Health Care, if anyone is interested.

I think Romney needs to hear these stories, hear the details of how our lives are effected by the swiss cheese safety net.

Some of my other blog posts may prove instructive:
Feds Fiddling While State Medicaid Programs BURN | Nick’s Crusade (a critique of how ObamaCare will impact Medicaid, amid a report of budget cuts in the South leaving people with disabilities in their own waste)
Government-Sponsored Ablism and Segregation Tears Families Apart | Nick’s Crusade (an essay against state-sponsored institutionalization, segregation, and oppression)
Medicaid: Why It’s Broken and How To Fix It | Nick’s Crusade (highlights the broken parts of Medicaid, including funding disparities, poverty mandates and the ultra-expensive and antiquated practice of unnecessarily institutionalizing people, and lays out some solutions)

I plan to drop Willard “Mitt” Romney a note, you could do the same. Let him know what problems in “safety net” programs need his help, concisely and politely. Appeal to his “Mr. Fix-it” rhetoric. I don’t know if anyone will be able to connect and begin a constructive dialogue with Team Romney, but if even one person did, it would have a wonderful impact.

info@mittromney.com

Mitt Romney for President
P.O. Box 149756
Boston, MA 02114-9756

More thoughts on Mitt Romney’s “very ample safety net” comments in Mitt Romney: Can You Help Us, Mr. Fix It? (Part 2)…

The Social vs. Medical Model of Disability, Communities Will Be Forced To Choose

Posted by nickdupree – April 7, 2011

You may or may not know about the medical model and the social model of disability.

Many disabled people have rejected this model. From the Taxi Driver Training -- Democracy, Disability and Society Group, UK

The social model of disability sees disabilities as normal aspects of life, not medical problems requiring "treatment," with the real problems coming from inaccessibility and ignorance of disabled people. From the Taxi Driver Training -- Democracy, Disability and Society Group, UK

I wanted to talk about the social model of services and supports for people with disabilities, and barriers to implementing it.

When you think about disability internationally, most disabled people in countries around the world are taken care of by their own families and their own communities. In Alabama, where I’m from, and in many of the poorer states, they didn’t get the medical model at all until federal funding in the 1960s. Prior to that, all you had was a kind of quasi-social model, with families and neighbors taking care of their disabled children, the same way they did in the 19th century and from time immemorial. A new social model of services and supports would essentially work like an enhanced version of that, with disabilities normal phenomena that communities live with and provide for.

In the first world countries, as families are working almost entirely outside of the home, they have no recourse but to use government services to help take care of their disabled children and adults. In Alabama, the attitude is that the most harsh, spartan medical model is all they can afford, and that they can’t afford to innovate. They have missed an opportunity to save money by re-imagining a social model that would put the power back in the hands of families and people with disabilities, instead of forcing them to spend on treatments that the medical model wants for them.

Across the country, budget cuts are removing the medical model more and more from our lives, because the states can no longer afford the kind of medical services that they’ve been paying for. The medical model won’t be the force it has been without enough public funding. So there’s more need than ever to implement a new social model of services and supports. In one of the conferences that I attended (TASH Boston ‘02) there was a session on what drives people to put their loved ones into nursing homes. And the number one reason found in studies was that when someone becomes incontinent of bladder and bowel, the family doesn’t want to deal with it, and puts them in a facility. There was one story where a mother wanted to put her autistic son in a facility just because he couldn’t figure out how to zipper his pants, though he could otherwise engage in self-care. This is the institutional bias, up close and personal, and it is ridiculous. We can no longer afford to put people with disabilities in segregated, medical model institutions. The funds saved by turning the institutional bias on its head and closing more of these terrible, outdated, freedom-killing institutions is great. We can’t afford these awful dinosaurs financially, and we can’t afford it in the human toll, in the human potential and spirits that are locked up.

To escape that fate of being put away forever in a nursing home, I had to fight Alabama Medicaid policies that would cut off home care services at age 21. My campaign, Nick’s Crusade, led to the Dupree v. Alabama Medicaid lawsuit, which used the Olmstead decision to end the practice of Alabama cutting off ventilator dependent people from in-home services once they turned 21. It was a victory that helped half a dozen people stay in their homes, but it didn’t solve the underlying problem, that even in the home, the medical model of home nursing care tends to segregate, restrict and limit the liberty and potential of people with disabilities.

I ended up having to leave college because of problems with home nursing care, and eventually I began to outlive my family’s ability to take care of me, and ended up relocating to New York City in August, 2008. Because of difficulties getting home care approved and started, home nursing agencies that are dysfunctional and cruel, and relentless ablism faced by me and my partner Alejandra, my first 378 days in New York were spent in a city rehab hospital. It was my first stent in a facility, and I learned a lot about the system that keeps unnecessary institutionalization going and told the world in The First Video Blog Series From Inside An Institution In History. Make especially sure to watch my videos What Life In An Institution Is Really Like, And Why This Entire Model Should Be Replaced and Too Many Setbacks To Count (about the barriers and delays to getting home, with music).

Because Alejandra and I love each other, we made the decision to spend our lives together, as many people with and without disabilities do. However, most people with disabilities living in the U.S. run into the so-called “marriage penalty” if they receive federal Social Security benefits, which are reduced by one-third if two recipients marry. Choosing to declare our commitment to each other despite this policy, we held a commitment ceremony in Central Park on June 6, 2010. It was also an opportunity for others in the community to learn about and share their experiences with this injustice.

Getting the supports needed to maintain my health and safety, attain freedom to access the community and resume college remain problematic. I write and draw webcomics, such as Theodore Roosevelt and the Rough Riders vs. Zombies. I was going to show my work from a table at the MoCCA Festival, and ended up canceling because we didn’t have the help for getting me up in the chair and out to the festival. For me as a disabled man, “freedom,” means that I have good caregivers around me that can help me do stuff. Without those people, I’m stuck in my room at best, and, at worst, dead.

Nurses, personal care attendants, and other home caregivers will always remain enormously important in any model because in first world countries the cost of living is high, and thus the people doing the bulk of the care will be the ones who can do it without losing their apartment. Paid supports should be budgeted by the disabled person (see individualized budgets and the Cash & Counseling program) so that both the caregivers and the patient aren’t constantly battling middlemen–agencies and Medicaid, and so the patient can give their best staff higher pay and bonuses. This essay isn’t meant diminish the importance of nurses and PCAs but to re-imagine them as part of a support community that form around people with disabilities; with families and communities that refuse to shelve their people in prison-like nursing facilities, that refuse to use a strict, heartless medical model inside the home, that say NO to materialism and profiteering, and instead focus on care and caring. Personal care is incredibly intimate and sensitive, caregivers see and touch and care for wounds, deformities and vulnerabilities that no one else sees, this is soulful and special work; it should never be callously commodified or turned into a cold assembly line in a nursing facility. The people who are good at going into someone’s home and making them clean, comfortable, giving them care and freedom, are very special people. In a new social model, friends and neighbors of the disabled person partner with and lend their support to these special caregivers, helping them and assisting them to assist their patient. The caregivers in turn helping the friends to help their patient. They care about each other and collaborate to help the disabled person. The community loves and supports each other.

Relying on Medicaid to give me ALL the assistance needed to live a real life in the community will always be difficult as long as Medicaid is locked-in to the medical model. It’s near impossible without friends and volunteers in your community lending some support. What is needed is the social model: normalization of disability: for society at large to start seeing people with disabilities as equal members of families and communities, instead of undue burdens. If someone in the community had cared about the kid who couldn’t manage the zipper on his pants, he wouldn’t have been at risk of institutionalization at great cost to his community. If the community would give their time and love more, we’d need Medicaid, the increasingly dark, Kafkaesque bureaucracy that pays for services for disabled people, less.

There are plenty of ways for the community to support people with disabilities. When I was hospitalized for several months in early 1992, Bettie Hudgens, the founder of the Communications department at Spring Hill College, where my mom taught, created a sign up sheet so that volunteers would visit me every day, so I would have someone checking in on me during the hours mom was teaching. The signup sheet allowed the community to organize around me so that every day was covered. We need that kind of community building now more than ever.

Communities will eventually be forced to choose, will they pay more and more for Medicaid as its red tape continues to render it hilariously dysfunctional like a Soviet department, or will friends and neighbors pitch in to help the elderly get in and out of bed, and change soiled clothes so they wouldn’t have to be segregated in institutions, so their people with disabilities will have less involvement with the heartless Medicaid bureaucracy and be less exposed to the whims of the politicians that fund them. It’s up to us to implement a new social model, as the old models begin to collapse.

Nick

Alabama’s Own Regina Benjamin, Advocate For Nick’s Crusade, Named Surgeon General Of US

Posted by nickdupree – August 1, 2009

Congratulations, Regina Benjamin!!

I couldn’t think of a better candidate for Surgeon General than Dr. Benjamin, and I was surprised and pleased that someone from my old hometown that I am familiar with hit the big-time!

President Obama announces Regina Benjamin as his nominee for Surgeon General

President Obama announces Regina Benjamin as his nominee for Surgeon General

Dr. Benjamin works in a clinic in Bayou La Batre just south of Mobile, Alabama (where I’m from). As far as I know, she’s the first Surgeon General to come directly from the trenches caring for the poor, not a hot-shot surgeon who never sees the outside of a hospital, a public health administrator, or a leading health care CEO well-known among country club political donors. ALL Surgeons General should be from the hands-on world, with experience with the hard realities of getting appropriate health care for America’s poor majority.

No one knows these tough realities better than Regina Benjamin, who is one of the only doctors in the small shrimping town of Bayou la Batre along the Gulf of Mexico, where old French Catholic and old Anglo Catholic families have fished and shrimped for centuries, and South Vietnamese (Catholic) shrimpers fled as war refugees after the Vietnam war ended. Bayou la Batre attracted many Vietnamese families because it’s one of the only rural shoreside shrimping villages in America similar to theirs back home, where they can live in a similar environment and work with fishing nets in the ways their families have for millennia, no need to re-train for a new job. The Vietnamese shrimpers and fishermen have increasingly edged the old shrimping families out of the business with their willingness to live on their boats all season, and a seemingly infinite capacity for thrift, bartering fish for gasoline to run their boats and other clever ways of lowering costs. I once knew an ex-army medic and LPN who’s a direct descendant of Joesph Bosarge, the French-born guy who founded Bayou la Batre with a land grant from Spain in 1786, and he told me a lot about the area. I’ve visited Bayou la Batre a few times. I’ve also talked to several Vietnamese kids about it (some of them I went to high school with; despite being poor they were always #1 in the year-end academic rankings, way ahead of me, though I was high up there). My point is, I know exactly where Regina Benjamin is coming from, and it ain’t the same board rooms and government offices where they found most of the previous Surgeons General. She runs a free clinic, and treats poor whites, poor blacks and poor Asians (often by having one of the English-speaking schoolkids translateinterpret her medical instructions into Vietnamese). Like an early 20th century country doctor, Dr. Benjamin does house calls, and accepts whatever patients can pay, even if they can’t, or even if all they can do is barter her part of their catch. This is a doctor who has risen to the top not through the usual cutthroat tactics, not through being the best at what everyone else is doing, but by charting a different path, advocating for and caring for the most needy, showing us what the focus of the medical world should be, public service.

I first became familiar with Regina Benjamin when I was fighting my famous two-year campaign to get Alabama Medicaid to stop stripping home care coverage for people like me just because we turn 21 (full story here). Local WPMI TV news interviewed her about my fight (as she then was director-designate of the Alabama State Medical Association) and she made supportive comments and said of course Alabama Medicaid should cover those who really need it, and that they’re obviously overlooking some gaps.

Regina Benjamin advocating for Nick's Crusade, August 2001

Regina Benjamin advocating for Nick's Crusade, August 2001

I don’t know of any other doctor who would stick her neck out for justice for kids she’s never met. Dr. Benjamin is a special person, exactly the kind of person who should be put in a powerful position to affect change. This nomination is one thing President Obama is doing RIGHT.

Bayou la Batre is one of the few remaining Catholic fishing communities that still does the annual Blessing of the Fleet in hopes of a bountiful catch that year. Dr. Benjamin is Catholic also, and likely has strong moral convictions that have led her to devote her career to the poor. Her clinic, along with all of Bayou la Batre and much of Mobile (including our backyard), was wrecked by Hurricane Katrina. She rebuilt the clinic, only for it to burn to the ground the night before its grand reopening. Then she rebuilt again. Like a heroine in a Biblical fable or something, each crushing tragedy made her stronger, gained her more support and attention, only pushed her higher. She was awarded the papal cross Pro Ecclesia et Pontifice by Pope Benedict XVI for exceptional service to the people of her diocese.

Incredibly, now Dr. Benjamin has the far-right fringe calling her “baby killer” because she’s never taken a hard-line against abortion (which is understandable from a doctor in an impoverished community that sees too many rapes and pregnancies endangering the mother). Even dumber, people are attacking her for her weight! These critics have probably never been to the Deep South; she is svelte by Alabama standards! And they’re also clueless about the expectations black men have for the women in their community re: size (maybe I should do a post about the differences in cultural expectations).

Anyhow, the haters need to get a grip. This nomination is going to sail through faster than a shrimp boat in a hurricane!

Regina Benjamin is probably Obama’s best nomination yet.

Nick

What Is Medicaid? What Are Waivers?

Posted by nickdupree – October 23, 2006

What Is Medicaid? What Are Waivers?

A Medicaid Policy Wonk Explains

Medicaid stuff is my specialty. While I’m a political junkie who has deep knowledge of American political ideas on all sides on nearly every issue and the philosophies that underpin them, and, while in a year of intense study, I’ve gained a great deal of Judaic knowledge, my area of expertise is still disability rights and Medicaid, and I have more study and hands-on experience in this area than in any other. A solid case could be made that, though it’s hard to resist diving into the issue-of-the-day, I should shut up on other issues and focus on what I really am: a Medicaid policy wonk. :)

I want to explain to my readers what Medicaid is, and what Medicaid waivers are, because these are complex issues most legislators don’t even understand, much less the media, but are very critical to our most vunerable citizens.

Medicaid, along with Medicare, was amended to the Social Security system in 1965 as part of President Lyndon Johnson’s “Great Society” program, which sought to complete FDR’s “New Deal,” and finish something that had been sorely needed, and on the table forever: publicly-funded health care for “the indigent.” Medicare provides some limited hospital, nursing home, doctor, and now prescription drug coverage, among other things, for the elderly and disabled adults. Medicaid covers children and any other citizen who can’t afford medical bills, and it, unlike the purely federal Medicare, is administered by the states, so it varies widely from state to state. The federal judge who heard my case back in 2003 said Medicaid is the most confusing law he’s ever read in his long career in law. He’s right. I’ve read it, and it is an incredible labyrinth of half measures, carrots and sticks to compel states to provide coverage for nearly everything while in the next section providing microscopic loopholes so that the law doesn’t iron-clad force states to. Medicaid law painfully tip-toes a tightrope between federal mandates and violating states’ rights.

But what I want to address here is one of the most important roles that falls to state Medicaids, long-term care, especially what I’ve mentioned before, home care vs. nursing home and the institutional bias in Medicaid.

When Medicaid was established in it only allowed those with incredibly low incomes to participate, and few states provided home care at all. In the 80s the case of a young girl with a trach named Katie Beckett who was stuck in the hospital because Medicaid wouldn’t pay for home care was brought to the attention of Ronald Reagan. Everyone knew the situation was wrong. She was trapped in ICU, which was incredibly expensive, and it didn’t allow her to be with her family and thrive in the community. Her parents made too much money to even qualify for Medicaid. The Reagan administration recognized this and created a framework for home care waivers under Medicaid. The Katie Beckett waivers allow states who didn’t already provide home care to make exceptions (or “waive” typical rules) and provide home care by looking at the child’s income (nothing) not the parent’s income. Thus, a generation of severely disabled children got to qualify to live with their parents and get proper care. If Katie’s parents, and later Katie, hadn’t raised holy hell all the way up to the oval office, we wouldn’t have had ANY home care in most states for a lonnnnng time.

Katie Beckett herself emailed me once to congratulate me on my Crusade. She was a college student then in Iowa, walking around and fully included, when, as a baby, the establishment wanted to let her rot in the hospital forever. She was pretty cool. But she is busy now and doesn’t do tons of advocacy.

Anyhow, this is what waivers are, states “waiving” normal Medicaid rules (often waiving the rule that you must provide services to everyone) so they can provide additional services (like home care) to a specific population; in the program that I won in Alabama, the waiver provides home care only to those on ventilators, restricted to about 6 people. There’s another waiver only for those with HIV, implemented right after mine, possibly with my momentum. Every state has waiver programs for people with mental disabilities. Some states have waivers for diabetics, or only for a geographic area. I heard South Dakota created a waiver for only one dude. With the waiver system, state Medicaids can waive rules and provide as many or as little services as they want, to whomever they want, and get federal matching funds for it. And though they love to pass the buck to the feds, the feds have never denied a state’s request for a waiver. In the case of “Katie Beckett waiver” it means either a state’s home care waiver that allows children to be eligible under their income, or the underpinning federal law set up by the Reagan administration that allows states to look at the child’s income for eligibility. Every state, even Alabama with its third-world conditions, has a home care waiver or “Katie Beckett waiver” of some sort. Because of this federal mandate, children under 21 from middle class income brackets can qualify for EPSDT, (Medicaid’s federally mandated Early, Periodic, Screening, Diagnosis and Treatment program). But once the Medicaid recepient is an adult, there is zero mandate to provide them home care, and countless Americans have been given no choice but a nursing home. This is what spurred my successful campaign to force Alabama Medicaid to extend care past age 21 for a few people on ventilators.

But segregating people in institutions is a mandatory service the feds make state Medicaids provide, home care is still not mandatory for states. Though all states do provide home care on different levels, this “instutional bias” continues to limit home care options and create MASSIVE injustice.

As John F. Kennedy said in West Berlin, “freedom is indivisible, and when one man is enslaved, all are not free.” This echoes the classic Jewish idea of the oneness of humanity and our collective responsibility for social justice, which most Christians are exposed to through Jesus’ teachings, especially Catholics.

Of course the way Alabama and most states currently have it set up, most people don’t have the home care they need. Alabama’s policies have resulted in deaths, but also the policies of many other states. Alabama is definitely not alone. You’ve got states from Texas to Virginia lining up in the hall of shame. I don’t have any numbers, but I have plenty of stomach-rending personal stories. I lost my oldest childhood friend because his care got cut off at age 21 (story).

There’s a movement now to make home care mandatory under Medicaid, not only waivered, and that’s what MiCASSA, the legislation disability rights activists have been championing for a decade, does.

To say community works is like saying AIR WORKS! We all use it! We should not have to have a freaking special waiver just to have care in our community. It’s backwards. You should need a special waiver to be segregated in an institution, not just to live at home with the help you need. Community must be available to all. The civil right to live, work and play in the community among family and friends regardless of color, religion or disability, should be provided by states no matter what.

FIGHT!!!!!!!

Free Our People

Support MiCASSA!!!

Nick


Filed Under: Health care and Disability Rights

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