Category: Health care and Disability Rights

Chris Week: Ninth Anniversary—RIP Chris

Posted by – 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.


Mitt Romney: Can You Help Us, Mr. Fix It? (Part 2)

Posted by – February 10, 2012

Continuing my comments on Mitt Romney’s “very ample safety net” statement on CNN; see the first half of my post: Mitt Romney: Can You Help Us, Mr. Fix It? (Part 1)

So, as I said in Part 1, it’s very important to assess presidential candidates in a just and fair manner, and too often the news media is blaring the one sentence “not concerned about the very poor” sans context. But, to be honest, Romney’s answer is even worse when examined in its full context and nuance. Gail Collins over at the NYT wrote an excellent line-by-line breakdown of Mitt’s full statement. I won’t reprint her words here but I highly recommend you take a look.

Romney’s statement (read it here in full) singles out the 95% of Americans in the middle as his main concern. He’s not concerned about the top 1% and that leaves the bottom 4% he isn’t concerned about. Basic arithmetic shows the bottom 4% are those earning under $5,000 annually, a group politicians barely notice exist, much less spend time helping. This category would probably encompass mostly the elderly and disabled, and the homeless, including a lot of homeless veterans.

The most intelligent and spot-on post I’ve seen on this so far in the sprawling blogosphere is from the Columbia Journalism Review’s Campaign Desk: Three Thoughts on Mitt Romney’s ‘Very Poor’ Day : CJR
What makes it great is it actually does what journalism should, dig beneath the noise and the claims and try and unearth the facts. It points out that when Romney says the bottom 4% have a “very ample safety net” and it’s the middle class that needs help, it reveals a deep misunderstanding about the safety net in his brain. The article points out that social programs, for example Medicaid, spend more on long-term care for the elderly and disabled than on any other line item, and plenty of those folks qualify under medical assistance and Medicaid keeps them perched barely on the edge of a middle class quality of life. The article also cites data showing that many beneficiaries of Medicaid are actually middle-class families—certainly families in that broad “90-95 percent of Americans” that Romney says he wants to help—who “would otherwise be stuck with the full tab for care for their elderly and disabled relatives.” Medicaid is life support for the middle class as much as it’s a “safety net” for “the very poor.” More people should be cognizant of this data. Paul Ryan is: he hates that Medicaid is benefiting the middle class.

When pressed by CNN’s Soledad O’Brien after his initial “very poor” remark, Romney went on to say “We will hear from the Democrat Party about the plight of the poor.”
Essentially, he’s saying that’s their job, not Republicans’ role.

This references a political balance that may have existed 30 years ago, when Tip O’Neill and outspoken liberals controlled the House of Representatives and made sure the concerns of the poor were heard sometimes, but most certainly doesn’t exist now. No Democratic party leader that would remotely try to balance the scales toward the poor has existed since the era Tip O’Neill clinked high ball glasses in the Oval Office with Ronnie after 6 o’clock, and spent all his working hours before 6pm standing up to President Reagan, fighting for his blue-collar, poor base. He was by the unions, for the unions, and that doesn’t exist anymore. That is over; Tip O’Neill died in 1994 and no one remotely like him has succeeded him. Nancy Pelosi, the longest-serving Democratic Speaker of the House since O’Neill (she served four years) spends more time cozying up to corporate interests than unions. Instead of O’Neill, a hardscrabble Catholic boy from a poor Irish district, fighting the good fight for every day blue-collar people, we have Pelosi, an aloof elite holding a net worth of approximately $58 million in real estate, stock, and businesses she and her husband own, and is now facing an insider trading scandal. Sadly, Chris Hedges is right about the death of the liberal class.

When was the last time you heard Pelosi or Obama, or even the Clintons talk about the very poor? About the impoverished elderly? About people with disabilities? About the marginalized and excluded bottom 4% of Americans who have no apparent “trampoline out of poverty”? If I had a nickel for every time I’ve heard “from the Democrat party [sic] about the plight of the poor” over the past 20 years, I doubt I’d have enough nickels to make a phone call. Democrats frequently speechify about “working families,” when the problem is American families aren’t working, they can’t find enough work to make ends meet; too much of our economic base has been off-shored, and there hasn’t been enough innovation to replace what’s been lost. Obama and Pelosi talk about the middle class, campaigning for that big demographic same as Mitt Romney is, minus mentioning the “very poor” at all.

So given the Democrats abdicating their past role as fighters for the poor, we have to ask the Republicans as well, Romney included, for assistance for those trapped at the bottom, for help fixing the safety net and the upward ladder.

Unfortunately, the video footage is coming out, showing that “the people who need the help most are not the poor” is a recurring theme in Romney’s stump speeches. This is really troubling stuff, particularly after all the data has again and again shown the U.S. to lead the developed world in poverty [Source]. Also, as Romney says “if [the safety net] has holes in it, I will repair them,” he’s simultaneously pushing forth a tax plan that would blow a hole in social programs’ funding like we’ve never seen: Romney Tax Plan Would Require Slashing Social Safety Net … Says Romney Economic Adviser. It is disturbing that Romney says we have a “very ample safety net” while the next minute pushing a tax plan that—based on the analysis of his own economic adviser—would require slashing the very social programs he’s saying he’ll “repair.” Yet another contradiction from Willard “Mitt” Romney, the human mystery wrapped in an enigma. I want to reform the system to revolutionize how it sees us and respects our individual freedom, we need a very big change, I like the possibilities in some of Senator Wyden’s ideas for replacing Medicaid—which he calls a “caste system”—with something better and more equitable; what we don’t need is to destroy the program, death from a thousand cuts.

Still, I hope for some kind of educational moment can come out of this. That’s why I’ve written Romney HQ a letter. I have nothing against Governor Romney as a person, I’m sure he’s a great, affable guy, and I’d love to meet him to work on bringing individualized funding, choice and competition to Medicaid/Medicare instead of “one size fits all.” We don’t really know what kind of Republican Willard is deep down or how he’ll really govern—is he a lefty Rockefeller Republican like his dad, a moderate pragmatist like George H. W. Bush, a hard-right Reagan-and-Ayn-Rand type?—we don’t know. So why not assume he can be very reform-minded like his dad; why can’t Mitt be the one to lead the way in revolutionizing Medicaid and Medicare to be completely different? Choice, competition, individualized budgeting, cash and counseling—let’s go!

After all, Romney supporters like to refer to Mitt Romney as “Mr. Fix-it.” I’ve seen dudes holding “Romney: Mr. Fix-it” signs prior to the debates on cable news. I found this image on

Mr. Fix- It, America needs a proven leader with a strong conservative message.
Fan art by MittFan12 (Steve Thomas)
In a bizarre interlude, me finding this “Romney Mr. Fix it” image led to me stumbling into the chat room by accident. Most of the supporters in the chat were polite and cordial in answering my questions, and I left there with more respect for Team Romney than I came in with…

Mitt Romney, please fix the safety net.

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

Posted by – 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.

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 – 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.


Rain Man (1988) and Hollywood’s treatment of disability

Posted by – February 5, 2011

Hollywood Images of Disability (CHF EDIT) from salome chasnoff on Vimeo.

Everyone interested in disability rights should watch this 18min short “Hollywood Images of Disability,” about Hollywood’s terrible treatment of disability, which is normally depicted as something so deformed, so unspeakably terrifying that disabled characters have to be cured (Heidi, Monkey Shines, Avatar, and zillions of movies) put away forever (Rain Man) or euthanized (Of Mice and Men, Million Dollar Baby and countless other examples). Note: this short comments on clips from many different movies with R and PG-13 ratings, many of which contain sensationalist depictions of people with disabilities, exaggerated vulnerability of disabled women–Uma Thurmond playing a naked blind woman being vulnerable and threatened, extreme violence and murders of people with disabilities, male and female, and will be disturbing for anyone with a conscience.

I saw Rain Man (1988) on the big screen when it came out (I was 6 years old and I didn’t understand much beyond the beautiful imagery). When I saw it again as a young teenager it impacted me a lot. I really remember it vividly.

Rain Man is the autistic brother that was just discovered by cool dude Charlie (Tom Cruise, who back in the 80s, we all worshiped as the coolest guy ever and wanted to emulate, along with Michael J. Fox & Matthew Broderick–in 1990 I once made mom’s hairdresser make my hair like Michael J. Fox’s). Charlie removes Rain Man/Raymond from the nursing home and they go on an amazing adventure that as a teen I could only dream of. Ray is loosed from his cage! While most men in the audience are undoubtedly identifying with Charlie, the cool as ice, young business shark of the ’80s (see Gordon Gekko) and his struggles and interests, I’m identifying with Ray, and strongly. For the first time, Ray can move around and develop out in the real world: he’s experiencing life with all its thrills, very real dangers, wonderful strangeness, opportunities, fulfillment and sexual excitement. He gets to fail at driving the old Buick convertible, win fat stacks of cash at a beautiful Las Vegas casino. He’s able to really live, warts and all, unlike the nursing home where there is nothing but soulless routine and the dictatorial control of the facility’s staff who don’t really know or care for Ray.

The scene that caught my attention the most was when Ray ends up alone in the casino elevator with a beautiful woman, Charlie’s girlfriend Susanna (Valeria Golino) who brakes the elevator and slow dances with him and kisses him. It is brief but an electrifyingly sexy moment. I’ll go into a great amount of detail so ya’ll can understand how a young disabled man saw these images. They used every camera and make-up trick to make the actress look like the perfect hot date of the 80s style. In this elevator Ray is confronted with a very powerful woman, empowered, living life; she dances with and kisses Ray maybe out of curiosity, maybe because it feels enormously powerful to initiate a man into the world of women. She is open to being inclusive. Possible T-Shirt: NOT A SLUT. INCLUSIVE. When you’re a young disabled man, you see her in the elevator and look at her like a vision of feminine power and inclusivity, a chance at entering the adult world. Not long into the scene, she restarts the elevator, looking a little sad and disappointed that Ray didn’t really kiss her back and touch her, and the moment was over. I was transfixed (nearly every male probably was–it immerses the audience in the ultimate fantasy of a woman actually wanting them).

This was the first time in my life that I had seen a woman interested in giving that kind of attention and affection to a disabled man. It was like a fairy tale come true, Ray doesn’t have to be locked up in the gilded cage at the nursing home, he had a real CHANCE at life, opportunities to see and do amazing things and feel and love. To me, the opportunities to succeed were as important and thrilling, if not moreso, than actually success. At the time, 1994, I was entering puberty and very focused on all these issues, while living in an environment with the myriad barriers so common to the disability experience, plus being guarding by nurses 24/7 had already cut me off from girls, from kids my age entirely in middle school. This movie made me think I could one day escape the cage and talk to women in elevators.

But the movie closed with Tom Cruise putting Ray back in the cage, portrayed as the right thing, the courageous and hard thing to put him back in the nursing home, the more “appropriate” setting. How well Ray did in the real world evidently didn’t matter; he had 1 autistic meltdown (ONE) and accidentally broke the precious coffee maker, and that was the end of that. Charlie is depicted as a hero for doing this and ending Ray’s opportunities for a life, forever. It’s all about Charlie’s journey, the familiar Quest o’ Redemption trope that is as old as literature itself, and in the United States typically involve a journey by car across the American continent. Ultimately, as the short film “Hollywood Images of Disability” illustrates quite well, disabled characters in Rain Man and other Hollywood movies aren’t people as much as Oscar bait for a “difficult” portrayal (for the Raymond role, Dustin Hoffman won the Oscar for Best Actor; “The diseased/addicted/mentally impaired always get the Oscar.” — Hollywood Rule Book, Vanity Fair) and disabled characters are mainly used as plot devices to facilitate the hero’s development. In Rain Man, Ray, his struggles, his interests, aren’t considered at all; the point of the story is that Charlie starts off as a soulless corporate raider, grows to love Raymond, and at the end has evolved into a sensitive, mature adult able to make the “right” “mature” choices in life and love, and, grotesquely, the “mature” choice is to have the lawyer transfer custody of Raymond permanently to the nursing home. I thought it was particularly cruel to show Ray the world only to yank it away. To be expected, in a society where we aren’t wanted and barely accommodated enough to survive, but still a harsh introduction to reality for young teenaged Nick.

Read about the all-too-common “Bury Your Disabled” trope in popular culture, and try to raise awareness that it, along with other disability tropes that are harmful (and/or just ABSURD), are actually really wrong and awful, and should go away….


For MLK Day, this newsletter clipping about a speech I gave at Rev. King’s old church in Montgomery

Posted by – January 17, 2011

The University of Alabama
Alabama Disabilities Advocacy Program
School of Law Clinical Program

2003 Alabama Disability Summit

On August 14, 2003 the Alabama Disabilities Advocacy Program hosted its
third annual Disability Summit. Disability rights activists, advocates,
consumers, family members, and others gathered at the historic Dexter
Avenue King Memorial Baptist Church for a morning session that featured
Mr. Nick Dupree, Secretary of State Nancy Worley, Department of Mental
Health and Mental Retardation Commissioner Kathy Sawyer, and Governor
Bob Riley.

Mr. Dupree led off the session discussing the Supreme Court's Olmstead
v. L.C. decision in relation to Brown v. Board of Education, comparing
the racial desegregation of schools in Brown to desegregation of persons
with disabilities under Olmsted through deinstitutionalization and
community placement. Nick Dupree is a veteran disability rights activist
at the age of twenty-one. His efforts, along with ADAP, and “Nick's
Crusade" ( led to the development of a new
Technology Assistance Waiver approved by Medicaid in February 2003. This
waiver allows qualified Alabamians with disabilities over the age of
twenty-one to receive services at home, thereby limiting the need to
place these young adults in institutions.

Following Mr. Dupree, Secretary of State Nancy Worley addressed
accessible voting for persons with disabilities and Alabama. Secretary
Worley expressed her commitment to ensuring accessible voting and
explained the provisions of the recently enacted Help America Vote Act
(HAVA) that apply to persons with disabilities. Secretary Worley
encouraged people to contact her office ( with any
questions or comments about the new HAVA requirements.

Any problems with voting for persons with disabilities should be
reported to her office. Kathy Sawyer presented an overview of the Wyatt
Settlement. Commissioner Sawyer praised the progress the Department of
Mental Health and Mental Retardation has made under Wyatt. The
Commissioner also urged the audience to exercise their right to vote in
the upcoming tax referendum on September 9.

Gov. Riley concluded the morning session by outlining his proposed tax
package. The Governor emphasized that the package will both increase tax
revenue for the state and relieve the tax burden of those least able to
pay. Warning that misinformation about the tax package is being
circulated, Governor Riley asked voters to educate themselves about
details of the program. At the close of the Governor's address, ADAP
staff and guests marched from the Church to the State Capitol Building
for lunch and the afternoon session.

The Cost of Denial For People with Disabilities

Posted by – September 25, 2010

To respond to the comments made during WBAI radio’s roundtable discussion about my latest blog essay “Why It’s Time For Survival Politics For People with Disabilities…”

The last statement in the radio segment about my blog was Josie Byzek saying that (my paraphrasing) the Tea Party may win big in the midterm elections, but then there could be a backlash at the ballots in two years (in the 2012 elections).
I don’t think the problem of inadequate services for people with disabilities will just go away with a political pendulum swing in two years. The dramatic changes that have already happened and will keep happening will ensure that these monkeys stay on our backs; because we squandered the budget for so many years on tax cuts and wars, budgetary realities will force severe benefit cuts, even if you had a 100% Dem Congress. No Congress will be able to govern in the way we’d all like, because of these very severe budgetary and political realities. Yes, part of the political reality is the Tea Party; those Tea Party activists and candidates who embrace an extreme form of Randism are more comfortable with disabled people’s blood on their hands than any political group has been in my lifetime; they’re completely comfortable demonizing people on public benefits as “robbers,” “leeches” and “parasites” and (I would argue) they’re completely irreconcilable with Judeo-Christian morality. Tea Party candidates and their Rand philosophy will be shaping the debate and helping define what is achievable legislatively like never before, and people with disabilities need to know about this, educate themselves, because this is a force that will affect our lives. But overlaying that is the larger problem of “we outta money.”

In this Dave Granlund cartoon, poor jobless people with a HELP sign reach out to Uncle Sam, but he just pulls out his empty pockets and says "I was going to ask you the same."

We’ll be paying the price for decades for the decision to try and pay for two simultaneous wars with tax cuts and “just go shopping!” and paying for it in numerous ways, some very painful. We gotta pay the piper, and we’ve run up a huuuuuuge tab. If history tells us anything, it’s that the tab is always borne by the poor and disabled, the most vulnerable and least able to pour money into campaigns to fight back.

Josie Byzek herself touched on the budgetary realities when mentioning sales tax revenue that helps fund state Medicaid isn’t the same anymore, the bottom fell out. We’ve got *apocalyptic* job loss, the last of the manufacturing sector exiting en masse, etc. Those hardhat-type 9-5 jobs won’t be coming back and you’d have to visit China to see them. The information tech world will be the source of jobs, but it hasn’t adapted and kept up enough to provide that yet, and it may be another lifetime before that happens. This will be a really ugly transition.

This Concord Coalition graph shows how Medicare, Medicaid and Social Security, in addition to interest on our enormous debt, continue to bloat the budget by % of GDP. In order to sustain benefit spending, we would need to HUGELY grow the economy, but currently, it's shrinking. Terrible choices are coming soon.

I’m arguing that technology, the economy, and politics are drastically shifting, and Medicare and Medicaid will soon change BIG TIME, so disability community leaders need to get in front of this and negotiate hard for the services we want to preserve most, because a lot of them ARE going away, and we have to get out of denial and start coping and adapting NOW! Catastrophic institutionalization, re-segregation, will happen unless we acknowledge that economic and budgetary realities mean that a lot of services are inevitably going away and negotiate hard for keeping select services we can’t go without (i.e. HCBS, Home and Community Based Services) using a cost-effectiveness argument. Congress won’t give a damn about us, but will care about cost if we make the case.

and y’know how Obama’s health reform bill increases Medicaid eligibility? It gives subsidies to help pay for the increased enrollment, but that enhanced FMAP is temporary. Then what? Then FAIL!! I’ve written about this in detail here; the eligibility mandates will hit the poorest states the hardest and they are already slashing programs to the bone to the extent they’re leaving us in our own waste. Once the eligibility mandates fully take effect in 2014, will the poorest states have to drop most care for people with disabilities? They could have to dump the people most in need, in favor of reshaping their programs to bring them in line with the new requirements, i.e. providing major medical coverage to low-income (able-bodied) adults. This is one of the worst parts of health “reform,” so very disconnected from the needs on the ground and the harsh realities we face.

This is a map of the worst and best Medicaid agencies in the U.S., with the reddest being the worst, and the lightest being the best. What I'm telling you is, this map will soon get much, much redder across the country.

In light of the situation, we need to be having conversations like “yes, we know that Medicaid dentistry and ophthalmology and free eyeglasses and prosthetics and leg braces and numerous things we’re accustomed to are going away, but we have to protect HCBS or the nursing facilities will cost the states EVEN MORE.”

We can’t afford the COST OF DENIAL. We can’t stay in denial that benefits will be changing; we can’t stay complacent! I’m saying WAKE UP, the societal, technological, economic and political changes are so great that benefits will be changing dramatically, and we aren’t prepared and we aren’t identifying priority areas to protect because there is an unwillingness to sacrifice ANYTHING, so Congress will likely cut EVERYTHING. Failure to get in front of this thing, staying in denial, will mean Congress will just impose 20% or 30% austerity across the board on all departments without understanding the issues involved.


Nick’s Crusade Blog Featured On Local Radio WBAI!

Posted by – September 23, 2010

My blog posts are making waves! My new blog essay about the affect of the Tea Party and the related drastic benefit changes on people with disabilities was the subject of a roundtable discussion this morning on local WBAI radio’s disability chat show “The Largest Minority.”

You can listen to the radio discussion here.

Sept. 23 “The Largest Minority” on WBAI radio, featuring a reading of my blog essay “Why It’s Time For Survival Politics For People with Disabilities” and a roundtable discussion with cohosts T.K. Small & Lawrence Carter-Long, and guest Josie Byzek, New Mobility magazine

Listen to the discussion. I don’t agree that the shift in social services spending is a temporary problem that will be “all better” after the political pendulum swings back away from the Tea Party agenda.

I’m arguing that society, technology, the economy, and politics are drastically shifting, and Medicare and Medicaid will soon change BIG TIME, so disability community leaders need to get in front of this and negotiate hard for the services we want to preserve most, because a lot of them ARE going away, and we have to get out of denial and start coping and adapting NOW!

More on the important argument I’m making here: The Cost of Denial For People with Disabilities


Why It’s Time For Survival Politics For People with Disabilities

Posted by – September 22, 2010

To listen to WBAI radio’s roundtable discussion about the below essay, go here.

This isn’t “The Great Recession,” it’s “The Great Change.” The recession–that is just a symptom of these enormous tectonic shifts going on (societally, technologically, economically, politically) and our inability to keep up has caused disruptions and economic downturn. That economic downturn is not the disorder, it’s just a symptom of the rapid changes spinning around us and our inability to cope. The change has come and will keep coming. Obama promised political change to help us adapt to all the other changes, but failed because of immediate backlash. Now, the backlash (led by the Tea Party) is bringing political change, and we’re headed for an upheaval that will radically shift ideas about the publicly-funded services and supports that keep people with disabilities alive and participating.

The Tea Party agenda is incredibly important for people with disabilities to learn about and understand because those ideas are here and will soon be back in the halls of power, BIG TIME.
Understand; the Tea Party movement is just the newest part of a self-described revolutionary movement that began in the ’60s with Ronald Reagan and first gained broad federal legislative power with the “Republican Revolution” brought by the 1994 midterm elections. The Republican Revolution brought us Newt Gingrich, Dick Armey, Tom DeLay, the leaders of the Revolution, and dozens and dozens of loyal soldiers under them. Those foot soldiers, Senators and Congressmen first empowered by the ’94 revolution, the “Revolutionary guard” if you will, make up the bulk of the Congressional GOP today. And they’re worried now because the Tea Party is leading a second revolution, and they want their seats. Rick Lazio is a good example. Lazio was yet another foot soldier for the Republican Revolution and its policy platform, the Contract with America (which demanded lower taxes, eliminating welfare, tougher anti-crime laws and a balanced budget amendment making deficits unconstitutional). That was no longer right-wing enough for conservative voters; Lazio got crushed by Tea Partier Carl Paladino in the GOP gubernatorial primary. You have to hate much more to be a real conservative. This is like one of Robespierre’s purges of earlier revolutionaries; it’s not enough to support the revolution and oppose the enemy, you have to show a frenzied enthusiasm for every facet of the revolution and consistently revile the enemy publicly, or face the guillotine. Paladino painted Lazio as a “liberal Republican” throughout the primary, an INSANE claim, and won because a huge plurality of Republicans actually believes this. Rick Lazio must feel like his head’s rolling down the palace rug right now, poor bastard. Republican Revolution of ’94 wasn’t enough; now, foaming ultra-conservatives demand Republican Revolution II!

Republican Revolution II has already started; they even use the language of revolution, openly. Example: from Carl Paladino’s victory speech: “The ruling class knows — they’ve seen it now — there’s a people’s revolution.”

Watch CBS News Videos Online
This video is a great primer on the Tea Party and what they’re all about.

This survey of the Tea Party shows that Tea Partiers are 89% white. Taken from the above CBS News video.

This survey of the Tea Party reveals that 58% of Tea Partiers keep guns in the home, and 63% (an overwhelming majority) get their political news from FOX News Channel. Taken from the above CBS News video.

Even if the GOP doesn’t take over the Senate and the House, the populist groundswell it has generated (and incumbents’ fear of losing their jobs) will severely limit what Congress can do.

What ideas are the Tea Party/Republican Revolution II based on?

Reaction. The primary idea/emotion of this movement is that Obama’s presidency and the Democratic Congress are threatening their way of life and they have to “take our country back.” Conservapedia, which often seems like a Colbert-penned parody but actually is a serious project founded by Andrew Schlafly (youngest son of early segregationist and anti-feminist leader Phyllis Schlafly), has a good article on the Tea Party movement and its founding motives, all of which are a reaction to Democrats and their policies. It really is akin to Italy’s Blackshirts; it’s an authoritarian mass movement (and is being studied as such by authoritarian psychology scholars). It fits the authoritarian blueprint to a tee, right down to the outcry of an oppressed “majority” against what they see as “radicals,” scapegoating (and fear-baiting) of minorities, fear of redistribution of wealth to the “lesser,” and rallying cries to return to a heralded, idealized past. They believe that if only Republicans (especially Tea Party-endorsed Republicans) controlled the government, the rapid changes affecting their lives and the economic anxieties and fear of losing privileges they cause would be reduced. Fear and rage animate this movement.

92% of Tea Partiers think Obama is turning America into a socialist state, according to this recent poll. Image taken from the above CBS News video.

Commentators online, including Michelle Malkin and Christopher Hitchens, have turned this AP Photo into the "Islamic Rage Boy" political meme that still floats around the blogosphere today.

It’s almost analogous to the infamous “Islamic Rage Boy” from Kashmir, in furious reaction to the Indian government that the protestors feel will eradicate their way of life. The Tea Party also sets up a battle for their way of life, absolute good vs. absolute, unadulterated evil, with no shades of gray in between.

The followers are reacting to economic anxieties, but the leaders are of an Ayn Randist-bent. If you’ve been an internet activist for over a decade, you could find them saying the same things they are now (staunch anti-federalism, strict constructionist view of the Constitution that damns all federal social programs as unconstitutional, blaming FDR and the New Deal for federal overreach and all subsequent economic problems, near-deification of Ronald Reagan, fundamentalist belief in Voodoo Economics to the point that they know that tax cuts can create enough new revenue to fund anything, white supremacy, extreme persecution complex, paranoid conspiracy theories about an all-controlling liberal elite) back in the Clinton and Bush years on web forums like Those wingnut views are now heard much more often as we allow the fringe to creep into the mainstream, but the hard-right ideas are not new. Online communities like FreeRepublic and their ilk would disgust most people in the first 20 minutes browsing threads; these are hard-right echo-chambers that have an incredibly radicalizing affect on their followers, environments where reviling “the other” is essential for being in the “in-crowd” and cross-pollination with known far-right extremist groups is vibrant and unconcealed. These guys have a hardcore agenda, and always sought to build a grassroots movement to primary out GOP incumbents and push the party to the fringe, but were never able to until the recession and widespread economic fear gave them a vehicle.

A neon green paper sign at the Tax Day Tea Party in Boston reads

What does the Tea Party mean for people with disabilities?

The Tea Party leaders’ Rand philosophy label us who use social services “robbers,” “leeches” and “parasites” because we suck up the wealth rightfully earned by the labors of others. Judging by this video of hate activists yelling abuse like “If you’re looking for a handout, you’re in the wrong part of town! Nothing for free here, you have to work for everything you get!” at a disabled man at a Tea Party rally, and throwing money at him in revulsion, this movement embraces Social Darwinism, and they really do intend hatred for us people with disabilities and cutting off our services. Though I too would like an end to UNNECESSARY government interventions (especially in the area of civil liberties, which conservatives seem to have abandoned en masse) what counts as necessary government intervention is where Rand-bots and I differ, because they see nearly every intervention as unwarranted tyrannical intrusion into private matters. For them, even saving people from dying of decubitus ulcers from lack of personal care is unwanted government overreach.

There are opponents of this extreme agenda within the conservative leadership, for example, the New York Conservative Party said: “If Carl Paladino wins this thing, it will cause severe damage — it could be for decades — to the Republican Party of New York State.” Many (correctly) predict an internal struggle over policy once the GOP wins Congress. If Tea Party candidates run the table, expect radical change in the services provided to us people with disabilities. More likely, incoming freshmen Congressmen will be unable to oust Leader John Boehner (R – Oompa Loompa) and compromises on policy goals are expected.

How should we adapt to survive drastic changes in social spending?

I call on disability community leaders to seek a meeting with future Speaker Boehner, as well as likely GOP budget planners Paul Ryan, Eric Cantor and Kevin McCarthy (who, during their book tour rolling out the 2010 Roadmap for America’s Future legislation, have been asking voters and fellow Congressmen for an adult conversation about how best to handle the coming scaledown in social services) and meet with them to discuss PRESERVING the most cost-effective services for people with disabilities: home and community based services (HCBS). If we people with disabilities have the needed home and community based services, we stay in our homes with our loved ones, producing value in our communities, paying sales taxes, property taxes, etc. But if those services are yanked out from under us, we end up in insanely expensive nursing facilities, or worse, dead. Conservatives are usually penny smart and pound foolish on this issue, slashing “optional” HCBS funding while leaving nursing home costs to continually balloon. That “institutional bias” has to change, or the affect on people with disabilities will be just devastating as political winds keep changing and funding streams dry up. The budget arithmetic just doesn’t work, so benefits have to scale down; stop thinking this won’t change, it IS changing!

Unless the disability community wakes up to the realities that Medicaid and Medicare will soon be drastically changing and we get IN FRONT OF the issue and begin educating and negotiating hard for our top 5 most essential services to preserve, our quality of life will go down the drain. Those of us in New York will be living with services like they have under Alabama Medicaid, and Alabamians with disabilities will fall to the level of Dominican Republic or Colombia or India. We have to prevent that. It’s time for hardcore SURVIVAL POLITICS!!

In Alabama, Medicaid policies really took a vicious turn after the first Republican Revolution took over Congress after the ’94 elections. Ideas about social services changed drastically overnight. In ’96-’97 I was fighting Alabama’s stated plan to end home nursing completely and ship every last one of us to institutions out-of-state. I won, but not before several people I knew died. After George W. Bush took over the presidency in 2001, Alabama Medicaid, began saying openly that they can’t afford home care and that it should be the responsibility of families and communities, not the state. Spending on home care dropped dramatically, to unprecedented lows. I had to lobby the state legislature, and eventually sue, to keep my care from being dropped when I turned 21. I won, and saved my younger brother, but my friend Chris died because no caregiver was at home to hear his disconnect alarm. Now with unprecedented yawning budget gaps, home and community based services are scant to non-existent in the red states. I escaped to New York just in the nick of time.

Please realize that the change is here already in most of the country, even California now–thanks to the Governator and a weak legislature. Too many in the NY disability community are happy, comfortable and complacent; ya’ll don’t see the tectonic shifts coming. It’s coming because of the growing consensus that we no longer want to pay for/can’t afford Medicaid and Medicare as it is now, the growing consensus for insane, rugged individualism. People with disabilities, WAKE UP! The time for soul-searching and tough negotiating with conservatives is NOW.

Listen to Paul Ryan talking about his “Roadmap.” Understand that soon we’ll have no choice but deep sacrifices and tough compromises, so the best approach is to negotiate hard for our biggest priorities, and start NOW!


This Is All You Need To Know About This Year’s MDA Telethon

Posted by – September 6, 2010

Lots of people are, as always, posting about the MDA Telethon this Labor Day weekend (I recommend this piece by Laura Hershey). Usually the focus is on smashing the negative images (pity) that the MDA Telethon often conveys, and that is crucial because the Telethon brings to all corners of the U.S. the most-watched images of disability all year. But I usually focus on the help the MDA does and doesn’t provide, and how misleading the Telethon is about what they do for us “Jerry’s Kids.”

Jerry Lewis has taken a lot of heat for years over comments like “My kids cannot go into the workplace. There’s nothing they can do.” But I’m more concerned with WHY we can’t get into the workplace than with the negative comment itself. We stay at over double the general population’s unemployment rate not just because of “attitudinal barriers” (pity, seeing us as “less than,” and as charity cases, views the Telethon definitely perpetuates) but because we so often don’t have access to education, transportation, and the assistive technology that we need to succeed. Like wheelchairs.

The MDA sent out a letter to recipients last Fall, notifying us of major nationwide changes for fiscal year 2010: they will no longer help buy wheelchairs for “Jerry’s Kids.”

page 1 of scanned Letter from the MDA

page 2 of scanned Letter from the MDA
This scanned letter, passed to me by a concerned mom of kids with Duchenne’s, is not publicly available on the MDA web site, nor mentioned during the Telethon. I can only hope they don’t continue saying they provide wheelchairs on the Telethon.

The needs of those with MD are being met less and less by the MDA, and less and less by the state, cutting back brutally now thanks to the Great Recession. Now, future “Jerry’s Kids” will never again get a wheelchair with help from the MDA. Please look at these posts from the MDA forums about the changes, and MDA’s response.

I get no help whatsoever from the MDA, no matter how hard I have tried to work with them. The NYU MDA clinic essentially turned me away this year, the clinic director telling me “we don’t do metabolic disease” (nevermind that it was the Mobile, AL MDA clinic that diagnosed me with mitochondrial myopathy when I was a small child, and that their national goodwill ambassador Mattie Stepanek had it). Then, in a classy move, they referred me to a nonexistent “metabolic clinic” that when we called, said there is no such clinic. I’m totally open to discussion with MDA if they want to make this right, I would meet with an MDA representative if given the chance; but I’m not optimistic; their emphasis is simply NOT on those of us who’ve managed to survive into adulthood.

The charity model isn’t all bad; it can make a big difference in the lives of people with disabilities. Just look at the Islamic world, where people with disabilities often are getting more help (both physical and monetary) from their mosque than what we get from Medicaid! I got my first wheelchair from New Orleans MDA. But the MDA is really no longer a service charity, it’s research research research, cure cure cure, cures we’re told on the Telethon are only 5-10 years away but 20 years later are nowhere to be found.

A real charitable organization could make a huge difference in our lives, filling the enormous gaps we fall into every day, an understanding voice that could give hope for better quality of life after yet another Medicaid rejection of services. These diseases are no easy path. I REALLY NEED THE HELP! Just a shoulder to lean on and a little coordination would go a long way. But MDA is not that charitable organization, and it takes up so much “market space,” no competing nonprofit can gain the traction to provide this desperately needed assistance. That is my beef with the MDA, and I wish the discussion among disability rights circles was more in this direction.


See also, my blog about last year’s Telethon, focusing on dismantling misleading claims made on the Telethon.