Category: My Life

1986 Mobile Press-Register Article: on specialness and surviving

This 1986 Press-Register article about me, Jamie and Mom, especially Jamie, surviving the rare disease, was digitized by my Aunt Nancy in Virginia. Thank you.

Mom gave me permission to post this here. It’s so old the newspaper was still called the PRESS-REGISTER!

Back then the medical knowledge and approach to mitochondrial myopathies was much broader/more vague to say the least, and our carnitine deficiencies resist supplementation. We are certainly even rarier than 28 in the world. Today’s definition of mitochondrial myopathy largely excludes us, and metabolic medicine has de-listed carnitine deficiency as a distinct disease. It is now considered a symptom.

It’s my hope the article could help confirm my story about our unusual diagnosis, exceptionally uncommon for the time to put it mildly. And that the article could also somehow help other weird metabolic children….

Transcription of the article’s text below

Thanks to Alejandra far copying it down.






Her sons are ‘special’

Photo caption: Ruth Dupree and her sons Jamie and Nick.

Press-Register Reporter

Meet two special boys, Nick, 4, and Jamie Dupree, 2 1/2. They have a rare muscle disease. It leaves them too weak to walk and in Jamie’s case, sometimes too weak to breathe.

“I think they are real special,” said their mom, Ruth Belasco Dupree. “A priest said to me, you have to find things to be thankful for. Everyone thinks their kids are special. But I’m absolutely convinced mine are.”

The Dupree brothers have a carnitine deficiency, which leaves them with little muscle control.

Mrs. Dupree noticed Nick at five months old wasn’t attempting to push up on his hands or crawl. After taking him to a series of doctors, one doctor finally acknowledged that something was not right with eight-month old Nick. When Mrs. Dupree and her husband, Michael, moved here from Tallahassee, Fla., she was pregnant again.

“My OB wanted to be more definite about what Nick had,” said the art professor at Spring Hill College. “Nick was then diagnosed as having mitochondrial , a problem in the muscle cells. And that’s true. But there was no known pattern of heredity for it. We thought we had the green light,” as far as their second baby being free of the disease.

But a visiting professor from the University of Iowa, Dr. Hans Zellweger, told them the hard facts. He diagnosed Nick as having a carnitine deficiency and said there was a one in four chance that two-week old Jamie would also have it.

Looking at pictures of her sons, Nick, the active preschooler who doesn’t consider himself handicapped, and Jamie, with his loving smile and shock of red hair, she sighed. “Even if we had a crystal ball and had known,” about the disease, “we probably would have had Jamie.”

A month or so later, it was clear Jamie had the disease. And Zellweger told them that there were only 28 documented cases worldwide of carnitine deficiency.

Nick has gotten better. He can’t walk but he runs nonstop around the house on his scooter. He has a light, compact wheelchair that he uses at the school he attends for gifted children. He goes to gym and dancing classes.

“Nick doesn’t in any way regard himself as handicapped,” she said. “Nick says Jamie’s handicapped. I asked him why we had a handicapped parking sticker on our car. He said so we can park in places and get Jamie’s wheelchair out.

“We’ve gotten some braces for him and we hope they will support him and help him move his legs. I have every confidence that he will walk. He thinks he will.”

Jamie is a miracle. Almost two years ago he got pneumonia and was hospitalized. He was breathing with the help of the ventilator. “The pneumonia made him weaker and weaker. At one point, all he could move was his fingers. When they’d draw blood, he wouldn’t cry. It was too much to cry. He was so weak he couldn’t even smile. There was not a lot of hope for him.

“The ventilator we had went through his nose. Our pediatrician said we should have a tracheotomy done on him. The other case we dug up that was like him, the child died after the tracheotomy.

“Dr. Zellweger told us not to bother because Jamie would not be around long. We thanked him for his directness. And we decided to have it done. We decided it was more important to get him home.”

Mrs. Dupree said a nurse called Elaine Roussos, founder of Helping Hands for the Children, to talk to her. “She gave me a pep talk that I will remember forever. She was so kind and encouraging, she reversed my feeling from utter terror to exhilaration.

After the surgery, Jamie began to pick up again, she said. “In part he was being ventilated more efficiently. And in part, we’d gotten so happy about him coming home, it spilled over onto him.”

In April 1985, Jamie came home. He is still hooked up to a ventilator to help him breathe. He is fed through a tube. He can chew and has a good swallow, but he is still afraid to eat on his own. (He likes to eat Cheetos.) “It scares him because of his breathing problem,” his mother said. “He went for a long period of time when he couldn’t eat.”

“Jamie is not supposed to be able to talk, but he does. He can’t walk. He can’t roll over, but we can cheerlead him into it. We have minor landmarks. He has to be sort of propped up or lying on one side. But he’s gotten to the point that on a good day he can sit up by himself.”

“I think he’s making incredible progress. It’s slow compared to other children, but not for Jamie, who wasn’t supposed to make it out of the hospital.”

My New Orleans Saints community experience and Superdome trip: December 2000

When I wrote Saints commentary as the “Swami of the Swamp”

From the Mobile Register, sports section Monday, December the 18th.

Special thanks to Lee ^ for unearthing this article from his archives and taking the time to scan it for me

(Click to embiggen image of newspaper article)

This Superdome trip, my one and only visit inside da dome, really was a peak life experience for me.

Watching a live NFL game from the sideline may have some disadvantages compared to TV; you may not see everything that the quarterback does or every big play, but has major advantages. Being in the Superdome in person allows you to see so much more of what happens away from the ball. For example, I could see how the flying daredevil secondary of the 2000 Saints team—Fred Thomas at corner, Sammy Knight and Darren Perry the safeties, Fred Weary the other corner—covered opposing receivers deep downfield, doing acrobatic no-handed leaping half-climbs off their opponents, hands engaging the sky to potentially disrupt or intercept enemy passes. This is something that the TV coverage usually shows from high and distant angles if at all.

Being there let me soak up a ton of details, especially seeing one of our best defenses ever flying around, helmets gold and gleaming like Roman gladiators.

Other things you can’t get from TV are the cheerleaders, who actually do a great deal to manage the raucous home crowd, actually leading cheers. They signal everyone to get on the same page yelling DEFENSE when the defensive squad needs your support or YAY OFFENSE or whatever when that is proper; they’re always helping the crowd stay engaged and in sync. The “Saintsations” cheerleaders are just as rehearsed and choreographed as the football team: the offense and defense go through their sets and the team’s cheerleaders go through theirs.

And it was really cool seeing the opening ceremonies, the introductions, the jazz band blasting “When the Saints Go Marching In” with the WHODAT cheer tacked on at the end, and the colossal colosseum THE SUPERDOME itself.

I can write a lot about the Saints game, their 10-6 epic 2000 season, the dome, but what I remember most fondly is the respect and support of the guys. They acknowledged my football nerd acumen and writing skills, and didn’t view as impossible the actual doing stuff to help me and Mom get that van the 90 miles to New Orleans.

What I did and created in the community mattered; it wasn’t just another “Tiny Tim inspires, receives charity” human interest story.

I once heard “recognition is the greatest healer.” My Saints-related writing getting front page recognition in the Mobile Register definitely felt great. This experience still means a lot to me.

Freakin’ AOhelL deleted our boards, and most of my Swami of the Swamp posts and predictions were lost.  I miss my Saints community.

Maybe the SWAMI columns can return to the internets in some way in the future…


Medical Bureaucracy: Switching Your Ventilator “Because Policy” (Part 1/4)

Part 1 of 4 of the series: When Life and Death is “A Matter of Policy”

As I mentioned recently in the quasi-mission statement of the blog, I create bloggings to ask the right questions, to illuminate the unseen issues facing us ignored vulnerable groups, or that’s the goal.  Within that is the idea that the questions mainstream media asks are THE WRONG QUESTIONS, and that the issues facing vulnerable groups that really need advocates (e.g. families with medically complex children, people on mechanical ventilation, the population who faces poverty solely/primarily because of their disabling medical conditions) are largely unseen… therefore I keep blogging to fill that gap, to voice the unheard concerns.

One huge umbrella of concerns affecting me and others in the aforementioned unseen groups is the top-down rules and regulations imposed on us.  For us, there are the laws, but in terms of the ad-hoc jumble of non-systems that control the services and supports essential to our survival—much less quality of life—there are all the rules and regulations implementing the laws, and rules more local to us coming from home health agencies, state regulators and Medicaid offices, hospital administrators, the list goes on and could cover a number of pages unheard-of except for in encyclopedias, and these rules and regulations govern our lives just as much as the actual laws (if not moreso).

The bureaucratic octopi have tentacles everywhere, and they’re especially consequential in medical bureaucracy where people are at their most vulnerable and any tweak in the rules can change the care, and suddenly life and death is “a matter of policy,” not just about the right care at the right time. That can kill.

Medical Staff Too Often Directed to Do Things for No Discernable Medical Purpose

The actual lived experience with medibureaucracy matters most here, as the data to prove or disprove the impact of diverse millions of rules on untold millions of individual staff and patients doesn’t exist. One especially vexing hospital policy that I run into frequently is the “no foreign ventilators” policy, and it is so frustrating because it’s purely a problem of legalese, not a matter of the appropriate medical treatment…it’s simply “a matter of policy,” outside treatments and prescriptions, and therefore outside of the patient’s right to refuse treatment. I don’t single out one hospital, all hospitals do this.  If somehow your hospital is the same company as the DME (Durable Medical Equipment) company providing your home ventilator, there’s probably no issue of hospital non-ownership or fear of an unknown machine, and it’d be fine, but otherwise, the bureaucrats are likely to deem the liability risk of “OMG foreign equipment” worse than the risks of changing you to a hospital vent, even if the opposite is true.

"No foreign ventilators" - cartoon by Nick Dupree.  This is a caricature I painted about how it feels when hospital staff try to take your home vent, depicted here as portable lungs, caricature of my own self on the vent, hospital staff depicted as hands on the lungs and a speech bubble: "gonna take you off your vent now mmmkay?"
“No foreign ventilators” – cartoon by Nick Dupree. This is a caricature I painted about how it feels when hospital staff try to take your home vent, depicted here as portable lungs, caricature of my own self on the vent, hospital staff depicted as hands on the lungs and a speech bubble: “gonna take you off your vent now mmmkay?”

I would like to see a study of the effect of taking people off their vent in favor of a hospital vent for No Discernable Medical Purpose (NDMP). This could be done as a basic hospital exit survey or a more detailed “qualitative analysis” or something to discern the wider reality: for most of the people affected, is switching vents solely because they’ve switched care/legal jurisdictions (and for NDMP) a traumatic and risky thing, or is switching to a hospital vent more like switching to a new toothbrush for most, no biggie? I definitely fall into the former category, my lungs maintaining a delicate balance against “compressive atelectasis“—my spine smushing into the right middle lung—equilibrium created by high volume ventilation that can quickly deteriorate, lungs partly collapsing and all hell breaking loose when hastily forced on a different form of mechanical ventilation with different (inappropriately low) volume nearly 18 months ago subsequent to an exploratory thingy in the OR.  But I don’t know that most permanently vented patients react similarly….

While this is also an issue of patients like me who are so RARE they don’t match any of the hospital protocols or norms of practice, square peg vs. round hole, my focus in this series is the medical bureaucracy’s whole canon of weird rules, potentially affecting anyone, especially insofar as the rules and policies create staff actions that serve No Discernable Medical Purpose (NDMP).


intro post of my Series When Life and Death is “A Matter of Policy”

In Part 2, Paramedics, the VA, and doing things for NDMP
Part 3: the Milgram experiment and hospital ethics
Part 4: activism and rays of hope from medical bloggers

The Coler Chronicles: Collected Bloggings of the Institution Days

Dispatches from Ventboy Alcatraz

From inside the walls of the institution, Coler-Goldwater, I continued to create content, to blog, and we added video blogging from the inside.

I wrote the following blog posts about the institution, where I lived from August 28, 2008 to September 10, 2009:

All nine video blogs can be found here: First Video Blog Series From Inside An Institution

these video diaries/rants are me speaking on camera about the institutional experience and related policies… the commentary on the formative “stakeholder meetings” that shaped the Affordable Care Act is one of my most important videos, I think.

Note: the respect I have for the staff and bond felt with the other patients is very real, and though these diaries vent frustration and the heat felt at the time, their intent is to shed light not heat and to educate about the real world conditions and actual lived experience of disability in public long-term care hospitals.  Please understand that I blame policies not people.   I want to give Love to the human beings within the surreal constructs I’ve described.
In addition, you should know that the unit A13 I describe and the hospital Coler-Goldwater itself no longer exist in the forms I encountered, having closed/dramatically shifted at the end-of-2013 without the best transition plan for the people there…

I collected everything here for convenient access for readers who’d like an intimate look “on the inside.”


Recommended Seasonal Fruits for Autumn

I’m a bit late on this one… the holiday season’s crowding in on us, and soon people will consider it winter instead of fall, but I want to cover this anyway since few know there are autumn seasonal fruits.

The source for this, primarily, is the list 19 Seasonal Fruits and Veggies to Eat This Fall.

There are healthy fruits that come from autumn harvests. Persimmons, pears, cranberries, grapes, and two I’ll highlight here:

1. Apple

The mythical apple, poisoner of Snow White, a symbol of temptations that made it into Renaissance paintings of Eden (though the oral tradition often points out Eve and Adam ate grapes, fruit of the vine that still carries power).

Apples are good to eat, and a product of autumn harvest, which is why you see Fall Festivals with candy apples or “bobbing for apples” contests.

But not all apples are created equal.  There are over 7,500 varieties of apples: of these, “Fuji apples have the highest concentration of antioxidants, phenolics, and flavonoids, while Cortland and Empire apples have the lowest” (the Greatist article).  I like Granny Smith apples too…. though I’m guessing they’re somewhere in the middle on flavonoids, I’ve found them to have a mild stomach-calming effect.  I have mitochondrial-related disease of some sort, and when I was at my worst in Fall of 1991, there was a time when I couldn’t keep anything down excepting Granny Smith apples and peach sparkling water.

High-flavonoid, high-antioxidant foods become super important when dealing with mitochondrial involvement in disease, or eating for mitochondrial health just because you find it helpful.   I write with the former in mind.

2. Kiwifruit

“This fuzzy little fruit was brought to California in the 1960s and flourishes there September through December.” (Greatist article)

The kiwi is an unusual fruit.  They’re berries, with tiny edible seeds like a strawberry, but they grow on a vine, but they have an inedible furry exterior like a less ambitious coconut.  Australasia tends to have bizarre animal species, like the kangaroo and duckbill platypus, and the kiwifruit is like the duckbill platypus of the berry family (though it didn’t begin in Australasia).  Originally yang tao or the “Chinese gooseberry,” it spread from Southern China to New Zealand in the early 20th century and became popular with American GIs stationed in New Zealand during World War II.  “Jack Turner of produce exporters Turners and Growers suggested the name kiwifruit in 1959.” (from Wikipedia),  Kiwifruit orchards subsequently spread and got bigger in New Zealand, and by the ’80s their cultivation was thoroughly globalized and they became available in your local produce aisle.

Kiwifruit like growing in Mediterranean climates like New Zealand, California and Italy and Chile. Italy actually has a slight lead over New Zealand in tons of kiwis produced annually and is world #1 in kiwifruit tonnage (source). But I think most Italian kiwifruit likely supplies Europe, and U.S. buyers probably have kiwi from California or Chile, though surprisingly this 2005 world kiwifruit production map shows upstate NY as having North America’s only productive kiwifruit orchards (at least for 2005).
Bees have to pollinate kiwis for good yields, but they prefer pollinating other, less difficult plants, so it’s a beekeeper challenge.  More on our threatened bee population in another post.

Kiwifruit are high in Vitamin C (one kiwi is 1.5 times the daily requirements for C) plus Vitamin E, Vitamin K, flavonoids, has a mild anticoagulant effect, and more. (source)

Warning: kiwifruit may cause allergic reactions in sensitive people.

Personally, I do like them, they just get a bit harshly acidic… so eating a big one at once can burn.  The kiwifruit I’ve eaten in NY are enormous compared to what I remember from the late ’80s.  Size and acidity varies widely by kiwifruit species (there are around 60 species).

I painted a kiwi, hopefully well enough it’ll help you identify one should you encounter one in your daily life.

Kiwifruit, by Nick Dupree, painted November 2nd, 2013, in Corel Painter
Kiwifruit, by Nick Dupree, painted November 2nd, 2013, in Corel Painter

Of course, if you live in a food desert like the scenarios I described in my previous post, it can be difficult to impossible to access healthy seasonal fruits….


Some Thoughts On The Power of Speech

Obviously I lean heavily on written communication, both in texting basic needs and writing long-form when ideas need room. Personally, I think the novel is best used when your/my/the author’s ideas about something large (our past, our future, technology, childhood, humanity, the soul, big stuff) are deep enough that you need an entire novel to explore them in proper detail. Length of a given novel should be tied to exploring its theme, I guess I’m saying, and the written word has a special magic, but…

…in a way text is lacking, as large amounts of information normally conveyed through tone, inflection and other nuances can be lost. Limiting oneself to text only, as the web often forces us to, is sort of the personal communication equivalent of converting music from vinyl to digital, you’re getting 101010 but you have lost information between 0-1, losing the sounds at 0.09 for example, missing lots of raw data that is in the analog recording… but much worse. While there are many valid arguments that digital gives both creator and listener more advantages than its downsides, and early adopters of digital recording (Frank Zappa for example) offer proof positive of that, losing verbal expression is an unambiguous net loss for both creator and listener.

Sarcasm and other subtle types of humor are very difficult to do without the nuances of speech, and easily can be misread as nonsensical or offensive… those who can make a comedy novel work, communicating humor clearly solely through text (Douglas Adams for example) have a special sort of genius that’s too often overlooked.

Speech is uniquely human, even more part of being alive than motion, animation. Through my college years I learned that my garbled speech made people uncomfortable, that people are naturally averse to sifting the signal from the noise and the time consumption implied. People are even more bothered by the differences in speech than the lack of animation. This is a major social obstacle for vent users, at least for those of us whose underlying condition is wrecking the vocal musculature on top of the respiratory failure (e.g. major problem if you’re vent-dependent because you’re compensating for a—known or unknown—neuromuscular disease, less of a problem if you’re on a ventilator due to spinal cord injury). For me, it meant I was limited to communicating with a handful of students who had a natural comprehension of “Nickenese” or the patience to learn, then limited to the times they were free and I was on campus.

There’s also something spiritual in the power of speech. A few months back I spoke with a Jesuit friend of mine who I hadn’t talked to since we were both Spring Hill students in like 2004. He still understood a solid 3/4 of what I said (over Skype and my non-functioning mic) despite the negative changes to my trach and vocal musculature since then, which I thought would be impossible (the good MacBook internal mic picking up when my headset mic inevitably fails does go a long way). This led me to theorize… that there must be some sort of spiritually-unique imprint in the voice, some sound beneath sound that can be recalled like we recall faces, and then climbed like a lifeline toward comprehension of the voice’s words. There’s definitely more to speech than the tangible.

The idea that there’s more to speech than immediately apparent isn’t new. One of the parts of the Jewish tradition that resonates the most with me is its concepts around the power of speech, the idea of speech creating forces

Demon escaping through your speech!  Pastel with oil brush background (Corel Painter). Created September 21st, 2013
Demon escaping through your speech! Pastel with oil brush background (Corel Painter). Created September 21st, 2013

in the spiritual world (which is synonymous with our world, but sort of an unseen 5th dimension). You say something good, good is perpetuated in the world. You say something bad, you’re creating an evil that can stick around in the world. It’s like unleashing a demon. One abusive phrase can follow someone for the rest of their lives. “Lashon haRa,” roughly translated as “the evil tongue,” is a major spiritual problem to be carefully avoided, to apologize for, to atone for.  I’m not even close to perfect on this, but I do try to stay aware of it.

Don’t take the power of speech for granted. For me verbal communication is more and more valuable because of its power and scarcity.  Like Helium-3 or something.


Journeys with mitochondrial disease

It’s a new world, and those of us who have rare disorders are able to connect with and advise each other like never before. For me and my brother Jamie, the rare disorder is mitochondrial myopathy, and back in 1985 we were told we were among JUST 24 cases identified worldwide of what was then called “primary carnitine deficiency.” Today, “carnitine deficiency” is recognized as merely a symptom of numerous types of mitochondrial diseases, and there are WAAAY more people diagnosed than the two dozen identified in 1985, and some mitochondrial diseases even have names now (like Leigh’s disease, MELAS, MNGIE). Sadly, my type of mito has yet to be identified,

Cartoon of a crying mitochondrion (painted by me). Technically a mitochondrion (singular) but he is representing the sadness of all 1000-2000 mitochondria per cell in my body
Cartoon of a crying mitochondrion (painted by Nick). Technically a mitochondrion (singular) but he is representing the sadness of all 1000-2000 mitochondria per cell in my body
though the uncertainty that it’s really mito is all but gone since the tests results came back negative for every known form of muscular dystrophy earlier this month. I am different than many in that I don’t have neuro symptoms, mainly it is muscle loss so bad there’s nothing left to biopsy, and my body temp overheating constantly, though, judging from the mito bloggers out there, lacking neuro symptoms isn’t as uncommon as I thought.

The United Mitochondrial Disease Foundation—UMDF, which didn’t exist until 1996—says there’s a lot of cases added each year, with “1,000 to 4,000 children in the United states born with a mitochondrial disease” annually. As one of my favorite mito mom bloggers put it, it feels like an epidemic. I’d agree, rates of mitochondrial disease are up, and I think environmental factors are to blame…the fact that we pump pollutants and radiation into the natural world without knowing the potential mito-toxic consequences, and then we eat, drink and breathe from the natural world, and the external becomes the internal as those food materials become the matter you’re made of, the building blocks of the human. But the causes of the mutations that trigger mitochondrial disease understandably take a back seat for people like me and families who’re in daily coping-and-survival mode.

I’ve been following some of the mito blogs, and I am awed at how parents and loved ones of mito children (kids similar to me as a kid) are using the web to support each other. I wish this had been available for me and my mom when I was a kid (back in the 1980s and early ’90s).

As a survivor of childhood mito, I’d really like to share what I know, help others avoid some of what I’ve suffered, be a knowledgable listener and advisor among the mito bloggers, though I know I don’t exactly fit in with the mom blogs. I really want to help, and when I see kids going through what I went through, the BiPap, the chronic pain—which is still a constant battle for me—I really want to talk to, help, that family. And I want to help build a network of mito-activists and mito-knowledge to help those of us dealing with these diseases, who are too often treated horribly by the medical-industrial-complex, like anyone with complex medical needs that are difficult for them to understand. We need a veritable army of people behind us just to survive the system. I’m not sure exactly how to get such a network off the ground. But paired with the experience and knowledge mito bloggers have collectively, such a community could be a game changer.

Speaking of mito knowledge, there’s been controversy recently about the study published in Nature Medicine that proved a link between L-carnitine and arteriosclerosis, gunk in your arteries that causes heart attacks and stroke. Since the study focused on giving L-carnitine to mice with normal microbiota, normal gut processes and digestion, those of us taking daily L-carnitine supplements to treat a mitochondrial disease wonder how this effects us, if at all. With its emphasis on red meat (the most carnitine-rich part of the American diet), the study has been covered heavily all over the mainstream news channels—THIS from CBS News is a representative sample—with a lot of pics of red meat and beef B-roll producers love. When I think of this study, I don’t think of beef, I think of research residents giving mice micro-baby bottles of liquid L-carnitine in their cute mouse mouths, but that’s just me.

Because of this high-profile news and the—not necessarily invalid—concerns about arteriosclerosis, I’m being pushed to discontinue my L-carnitine supplements. The UMDF recently issued a statement urging caution. Because of the specifics of my mito journey, I’m reluctant to drop the carnitine.

I first started taking carnitine through Dr. Zellwegger’s clinical trial for the FDA’s safety and effectiveness human trials 1984-1985, via University of South Alabama, before carnitine was on the market. Literally I’m getting carnitine in my baby bottle. Then we couldn’t get carnitine when the trials ended.
Then in September 1991, when I was 9, I had what I call a “mito collapse” immediately following back surgery and an intense infection at the surgical site. The thin muscle I had was gone in less than a week, the opposite of “slow progression.” I went into a tailspin, ileus, dismotility and malabsorption so extreme that I was put on TPN. All your classic mito symptoms, at least that’s how Mom and I perceived it at the time. It makes sense that, in an inborn error of metabolism, the digestive system—where the heavy lifting of metabolism occurs—would be greatly effected, and BOY was it during this time. My digestive system grinding to a halt, the futile cramping, it was the most horrific thing I had experienced up to that point. For a few months, all I could keep down by mouth was the peach-flavored version of this very specific carbonated water, something like this.
Fortunately, carnitine was on the market, and some time very close to the day I began using the BiPap, I was started on the L-carnitine. Post-levocarnitine, the digestion problems ceased, and I haven’t had any ileus or needed TPN since that time. The supplements seemed to stop the free fall.
Ileus and dismotility haven’t been a problem since, nor has there been another “mito collapse,” though there is pretty much nothing left to lose in terms of muscle, and I have been 24/7 vent-dependent for almost 20 years, 22 years if we count the BiPap. It’s unlikely I could survive another “mito collapse.”

So I’m scared to go off carnitine… but never say never. I would be willing if it’s part of an audit of my entire “mito cocktail”—which since 1996 or thereabouts has been Levocarnitine, B2 and CoQ10—in totality, with other things changed, added, a systematic approach.

Each of our journeys with mitochondrial diseases are different, certainly none are easy, and many days it feels impossible. I really hope we can communicate more, network more, putting our knowledge together and gaining strength in numbers. Please comment below or on Facebook or Twitter.

In mitochondrial solidarity,


Chris Week: Ninth Anniversary—RIP Chris

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.


Living in Zomerica

How I’ve Changed Since Moving to New York City


Living in Zomerica

I started out and made my name as an activist in Alabama, where the left is deeply influenced by Martin Luther King Jr. I always spoke in the language of Biblical and moral imperatives, sometimes overtly, very much in the tradition of the Southern left, and I even had the chance to speak at Martin Luther King’s church in Montgomery (click for article and photo of that experience). I’m currently working on a memoir that details this part of my life, how I grew up in foggy South Alabama and became a successful activist.  It opens on my speech in Dexter Avenue King Memorial Baptist Church.  So, from the beginning, I feel a gap between me and left politics nationally; I come from a vastly different place than most people involved in politics.

That gap is now a chasm. After I moved to New York City in August 2008, the economy went belly up, and I saw every aspect of the world change. New York City’s hospitals began to crumble in a serious way. Several important hospitals closed. The state rehab hospital I was stuck in until September 10th, 2009, will close in 2014 and the patients they don’t move to the new location in Harlem—probably around 2,000 people out in the cold (by my own math) because of less available space—will be screwed. Living in this facility, the fact that most of my fellow patients had no hope of ever getting out, that the system is never going to respond, that I got out due to LUCK, was very clear to me.

For a time in fall 2008, it seemed the bad actors that built an elaborate house of cards atop mortgage scams and derivatives fraud would face the consequences of their actions, and, after going through bankruptcy as their victims had to, would finally make way for a new generation of financial professionals who would re-build. Instead, the Democratic party-run Congress gave the bad actors trillions, so an awful system can continue to hurt the American people. Constituents went ballistic; naturally, calls and letters were 100-1 opposed to TARP. Initially it was voted down in the House, right-wingers from Texas had the most impassioned arguments against this shocking, bald-faced corporate welfare. Then Vice President Cheney swooped in, lobbyists and their millions came knocking, and TARP passed overwhelmingly. Former IMF chief economist Simon Johnson characterized this as a “quiet coup.” That corporate influence could override the will of the people, and so quickly, indicated to me that FDR’s nightmare, private entities becoming more powerful than the state, was here.

Unhappy events abroad have retaught us two simple truths about the liberty of a democratic people. The first truth is that the liberty of a democracy is not safe if the people tolerate the growth of private power to a point where it becomes stronger than their democratic State itself. That, in its essence, is fascism — ownership of government by an individual, by a group or by any other controlling private power.
The second truth is that the liberty of a democracy is not safe if its business system does not provide employment and produce and distribute goods in such a way as to sustain an acceptable standard of living. Both lessons hit home. Among us today a concentration of private power without equal in history is growing.

— President Franklin D. Roosevelt, Simple Truths message to Congress (April 29, 1938)

I had always thought of government having enormous potential to be an instrument for all Americans, we the people, doing things together that we can’t do as individuals; after all, civil rights legislation triggered a tectonic shift in Alabama. But there I was, in a state hospital on the island in the East River named after FDR, realizing that everything had changed.  The U.S. experiment trying to have a democracy and unrestrained influence of plutocrats over elections simultaneously was over; the transformation into corporate state, by which I mean government of the corporation, by the corporation, for the corporation, was complete. The corporate class has utterly monopolized the levers of power via campaign finance; government will not be an engine of good for the foreseeable future. This was a very difficult conclusion for me to come to, I want government to be a change agent, but the conclusion became unavoidable.

The state is such a marionette, it props up banks that were already exsanguinated by malfeasance and mismanagement; instead of shuttering dead banks, the marionette pumps in billions and billions, creating zombie banks. These zombie banks are a new and disturbing sight in America, insolvent and decayed, but remaining open thanks to government largesse.  They take deposits, but no longer function as banks in the traditional sense; they don’t do loans or extend lines of credit to small businesses, but they may eat other banks and turn them into zombie banks. TARP wasn’t temporary as promised. It’s still reanimating zombie banks, and since the continued aid isn’t reviving the banks, I wonder if the purpose isn’t simply funneling wealth upwards to the puppet masters, the banks’ primary role to be conduits.

We also have zombie financial firms, zombie real estate, zombie schools, zombie hospitals. Too many of us have become zomericans.

A few months after that, I applied for affordable housing. I got a rejection letter back about 60 days later. It said that the Section 8 list had been closed since 2006, and “your application has been destroyed.” Great feeling.
In the Fiscal Cliff Bill, Goldman Sachs got subsidized housing for their building in Manhattan (triple tax exempt, no local, state or federal taxes, plus they get Liberty Bonds, only supposed to be for WTC reconstruction). Not kidding. Even in a time of supposed austerity.  This alone has really changed my thinking. For details, see Naked Capitalism | Eight Corporate Subsidies in the Fiscal Cliff Bill

If it weren’t for a series of serendipitous and bizarre events that made it possible to move in with Alejandra (my partner), who has affordable housing through a different, local, program, I’d still be in the facility. I’ve lived here since September 10th 2009, in Lower Manhattan. I am bizarrely lucky, and know it. And I’m very grateful.

We live very close to Zuccotti, so we observed the Occupy Wall Street movement closely. Alejandra and I are part of the Occupy “disability caucus,” trying to bring disability issues to the attention of the wider movement. Just holding meetings where people with disabilities can talk openly about their predicament following the collapse of the economy has been very valuable; our concerns never see the light of day in media and political circles. And contrary to media portrayals, the old economic configuration is gone and never coming back.

Occupy Wall Street is a reaction to the economic system dying, its apparent murder via mismanagement, malfeasance and predation shoving it off the cliff. There’s no complex list of demands. It’s a protest of the crimes of the bad actors of Wall Street, the resulting collapse of the economy and the attendant suffering, and our political system’s inability to even see the problem. The Occupiers tend to be students or recent grads who bought into the American dream, got into debt pursuing advanced degrees, then realized the economy had capsized and there were no jobs with a living wage, much less jobs in their fields they expected would provide them desperately needed upward mobility and loan repayment. A lot of dreams shattered on the iceberg of the 2008 economic collapse. The concerns expressed by Occupy Wall Street are completely legitimate.

The response to Occupy by the NYPD, the FBI, the rest of our agencies was awful. It removed any doubt I had that we have a corporate state, because the security establishment (NYPD, FBI, etc.) responded to protests against the obviously harmful practices of corporations like Goldman Sachs as a direct attack on the state itself. Though it was called Occupy Wall Street, the NYPD never let the protesters get near Wall Street around the NYSE building; they cordoned off the area around it and sent a very clear and violent message whenever Occupiers tried——in non-violent marches—to get past the barricade. Several times, I saw Occupiers, by the thousands—amazingly strong numbers, cross in front of our building to get closer to Wall Street. The most violent responses from the NYPD came in these moments, that’s when the tear gas and rubber bullets came out, that’s when you have officers breaking heads and mounted police blocking streets with highly coordinated Roman-style formations. I learned a lot from this. It seemed very important to protect the people in and around the NYSE from even seeing the protests. They also—in the final weeks of the occupations in Lower Manhattan—had a new satellite-dish-looking technology that disabled cell phones, cameras, and other digital devices, so the more violent incidents couldn’t be photographed or documented in any way.

Both the NYPD and FBI have acknowledged the non-violence of Occupy Wall Street. The movement has hewed to Martin Luther King’s teachings of non-violent civil disobedience almost flawlessly. But simultaneously the FBI labeled it a terrorist group. Heavily censored FBI memos (released in response to a FOIA request, but not until the media lull between Christmas and New Year’s to reduce exposure) revealed a lot about the government response to Occupy. The JTTF (Joint Terrorism Task Force) was deeply involved in monitoring the movement and writing memos about “the threat” to banks and other financial institutions; the memos’ tone treats the corporations like they’re the customers. Then there’s the infamous assassination memo, revealing the FBI knew an outside group in Texas planned to kill Occupy “leaders” with suppressed sniper rifles “if deemed necessary.” The memos provide a rare, disturbing look into the thinking of our security establishment, which, by the way, hasn’t lifted a finger to investigate ridiculously obvious malfeasance on Wall Street. For an excellent analysis of these memos, and links to the documents themselves, see: Naked Capitalism | Banks Deeply Involved in FBI-Coordinated Suppression of “Terrorist” Occupy Wall Street

A lot of things, especially the economy, have changed dramatically for the worse since autumn 2008. The system has decayed to a frightening degree. But it isn’t that I hate the rich. I don’t. And I don’t blame capitalism; capitalism at its best, when not corrupted beyond all recognition, encourages lower prices and better services through competition. Giant corporate welfare troughs like TARP and ObamaCare, requiring every American to buy health insurance from select companies, enshrining certain banks by name as “Too Big To Fail,” these things have nothing to do with capitalism. This is Mussolini-style corporatism. Corporatism is the problem. The segment of the corporate class that’s monopolized the Congress and executive branch with big money, the estimated .05% of Americans who max out at the legal limit for campaign contributions each year, these guys are the problem, not “the rich” writ large. As I document in a recent post, we’re now in the America of Congressman Bribo and the House of Bribasentatives. We’ve allowed a tiny, shadowy minority to monopolize the levers of power, which makes impossible the aim of our founding fathers, for, as Federalist No. 52 put it, a Congress “dependent upon the People alone.” (Source) Since we have allowed this, which isn’t a “conspiracy,” but rather total spinelessness and capitulation of our craven political class in the face of a corporate class that very openly pursues its self-interest with more and more sophisticated methods, we increasingly enter FDR’s nightmare, and the attendant “acceptable standard of living” problems that he mentioned.

My thinking has changed dramatically. Back in Alabama, surrounded by GOP wins in the 94% Soviet-range, I thought electing Democrats en masse would put us on a better path, or at least help a little via incremental reforms (I was always skeptical of the powerful). Now, I realize movements are everything. Now, the Left gets most of my resentment. They have capitulated and betrayed their own to such an extent, for so long, monstrosities like ObamaCare, which, at its core is $400 billion in subsidies to the dying private health insurance industry, are embraced as “liberal.” ObamaCare is not progressive; it takes us backward. It doesn’t address any of the Medicaid issues I have fought to bring to light over the years. Instead, it is almost solely about federal cash propping up zombie health insurance, as jobs increasingly no longer provide health insurance. We’ve entered an economy based on freelancing and short-term contracts, and I’m not saying that it is necessarily bad in-and-of-itself, but it’s the reality and instead of addressing the reality, ObamaCare addresses employer health insurance plans that are increasingly a relic of the 20th century economy. The economic configuration we grew up with is GONE. ObamaCare is like inventing a better 8-track player in 2012, there is a major disconnect from reality.

Ultimately there is no power to narcissistic, self-indulgent thinking. Authentic thinking originates with an encounter with the world.

— Abraham Joshua Heschel, in Ch. 5 of Who Is Man? (1965)

The disconnect between the liberal establishment and the realities for the rest of us has increasingly widened as the Left courts the same donors at the top of the corporate food chain, the .05%. That disconnect upsets me the most. It means they’re not encountering the world, not seeing the painful realities and unintended consequences of their policies. The hermetically-sealed bubble they live in is obvious when liberal pundits are baffled by protests. “Why are they protesting?” they ask, as debt, unemployment, and hunger reach unprecedented levels.

Death of the Liberal Class by Chris Hedges presents overwhelming evidence of the Left’s “death.” Obama is particularly appalling. I felt some guarded optimism at first, but what faith I had that Obama would help quickly evaporated; I don’t see anything that this administration has done as great. The few times Obama admits there are serious problems under his administration of happy optimistic shiny wonderfulness, like when he did the Q&A on immigration on Univision, he acts powerless to lead, or even affect change in any of the federal agencies that answer to him. Has corporate influence neutered him that thoroughly?

Here are my own observations: I’ve never heard Obama say the words “poor” or “poor people.” There’s no connection to Martin Luther King’s legacy or his poor people’s campaign. The newspeak-esque language that’s used is always “middle class families,” or “working families,” which is not only bloodless and doesn’t acknowledge the suffering out there, but also sends the message “don’t worry corporate lobbyists, we only want to help families that work, not those pitiful lazy wretches who can’t find work.” Never is the disintegration of the family that’s happened in-tandem with economic disintegration mentioned. Though the homeless heavily dotted the streets of Washington DC in 2003 when I was there, and it must be exponentially worse post-collapse, Obama can’t find the strength to say the word “poor,” much less mention the homeless people he must pass in the presidential limousine.

The fact that the left media meekly pleads with Obama: The Nation | White House Meeting with Low-Income Americans? —Obama has not met meaningfully, not once, with poor people or anti-poverty activists (but the author still can’t say the P-word!) and Salon | Will Obama cave on Social Security? shows how far we’ve fallen.

The bubble seems so impenetrable, it’s looking like the Orwellian caste system: there’s the Inner Party: the 0.5%, the segment that controls the elections, the president, Congress, and the corporate class, then the Outer Party: the craven media, political parties, left and right organizations, universities, etc., who are recognizable by their eagerness to serve and provide cover to those within the Inner Party so they maintain the pillowy cocoon of economic safety during the present instability. Then, there’s everyone else. I’m reluctant to call us proles, since there’s still a lot of wealth in our ranks, even an upper-middle-class, but we don’t have much voice and the Outer and Inner Party aren’t very aware of our concerns.

The collapse of The Left is so complete that Mussolini-style corporatism is now the “center,” and pursued doggedly by the Obama and his administration of corporate courtiers. I now blame The Left more than the GOP, much more than the Tea Party, who are responding to the economic collapse and bailout culture same as Occupy. I wish Occupy and the Tea Party could band together and fight the bailouts that are continuing.

We need to look at HOW it got so bad. The corporate culture is suspect #1. It bombards us constantly like the TVs in Orwell’s Nineteen-Eighty-Four you can never turn off. Turn that $#!T off. Too often, the messages coming through are “buy our newest product, and [subtext] buy this thing, it’s all you need to be happy! You don’t need community, church, a moral core, the Bible, etc etc etc.” The messages coming in via mass corporate culture are usually the exact opposite of the inherent value of human life, humans having inherent value and sanctity and dignity, instead, the only value lies in what you produce, your income, or how ruthless you are. Not to mention the pornification of everything; if I had a daughter, I would burn the TV. Several rabbis have pointed out, the dominant mass media culture is closer to the ancient Greek culture that glorified the body and beauty over everything else, than Jewish and Christian cultures that glorified spiritual and intellectual ability. The messages we’ve become acculturated with, have resulted in our loosening our grip on the moral imperatives we must hold fast to….

We’ve lost a lot. Movements which forced President Nixon to sign important legislation like the Clean Water Act, OSHA, etc., they’re gone now. The labor movement is mostly gone.
What do we need to do to fight back against corporate dominance, national decay, and the zombification of everything? First, we need a realistic assessment of where we are and how bad it’s gotten. Then, we have to, on the macro level, build new regional and national movements that articulate the concerns of the poor and disabled, in language that flows from the conscience and moral imperatives that can’t be denied. Only radical love can beat radical evil; I’m for radical love. Occupy Wall Street needs to come back into the streets, but much more is needed. We need the kind of movements that are so powerful, the corporate state has to respond, like Solidarity in 1980s Poland or Tahrir Square in Egypt. Movements are everything.

On the micro level, we must rebuild community. Americans have too often bought into the cult of the self, that if you just buy the new product, you don’t need others. We’ve been lulled into isolation, buying the idea that government will take care of those in need: the poor, the disabled, the elderly. Even when Medicare and Medicaid did provide for the material needs of people like me, which is less and less true today, there’s a need for social and spiritual connection. I myself really need community. We have to rebuild communities that provide those connections. Churches and synagogues need to be a part of this effort, and need to articulate the moral imperatives that give movements their power.

Here’s an example of the moral thinking movements need, from Catholic theologian Paul Tillich:

…When Augustine equates the Kingdom of God with the church and the Kingdom of Satan with the great world empires, he is partly right and partly wrong. He is right in asserting that in principle the church is the representative of the Kingdom of God; he is wrong in overlooking the fact…that the demonic powers can penetrate into the church itself, both in its doctrine and institutions. He is right to the extent in which he emphasizes the demonic element in every political structure of power

— Paul Tillich in Theology of Peace

…The technical development is irreversible and adjustment is necessary in every society, especially in a mass society. The person as a person can preserve himself only by a partial non-participation in the objectifying structures of technical society. But he can withdraw even partially only if he has a place to which to withdraw.

…It is the task of the Church, especially of its theology, to describe the place of withdrawal, mainly the “religious reservation.” It is the task of active groups within and on the boundary line of the Church to show the possibilities of attack, to participate in it wherever it is made and to be ready to lead it if necessary.

…Christian action must find a way to save the person in the industrial society.

— Paul Tillich, The Person in a Technical Society

We have to find the strength to build very new movements that articulate the reality the poor face. We can’t wait for a moribund Congress and Goldman Sachs-controlled presidency to do it. Without national renewal, we face national collapse.

Looking forward to your comments,


Recommended reading: The Working Poor: Invisible in America by David K. Shipler

The Death of the Liberal Class by Chris Hedges

Feed your brain a long-form meal, not a sound-bite

The Path of the Disabled Man

I had originally intended to write this for Blogging Against Disablism Day, BADD, 2012. Obviously I’m WAY late for that, over two days after the deadline. But since I’ve participated in BADD in the past, I said hey, why not?! Maybe BADD readers will still find this post, and may, along with other audiences, find “The Path of the Disabled Man” of interest. I’ve never written about gender before. This is an attempt to convey something of the disabled male’s lived experience, and I hope it works.

The Storms Within

People forget, but though humans DO have a spiritual core, they’re coming from tens of thousands of years in the cave as well. Certain things are in-born, hard-wired in the base end of the forebrain, or reptilian brain or whatever you may call it; right next to things like fight or flight, territoriality, hunger and other instincts in the lower brain are our sexuality and some fundamental guides of human attractiveness, passed straight down from the caveman/cavewoman experience.

Those looking for a good cavewoman to pair with, knowing all too well that the pairing would need to produce like eight kids within a decade before the end of your life expectancy at age 30 to have maybe two of your offspring survive in a bleak era of horrendous infant, child and adult mortality—something that would continue to be a huge factor in the everyday lives of humans until the emergence of modern medicine in the 20th century, would automatically look for a cavewoman with a healthy look like she could carry eight babies, full breasts that look like they could feed two babies at once, nice skin signaling health, and a good-looking symmetrical face (a subconscious indicator of good genes in all humans). This is hard-wired in the brain as guideposts pointing toward female attractiveness, as shown by its prevalence today across cultures on all six inhabited continents.  A deep, bedrock thing in the mind; though largely subconscious, it remains ubiquitous.

Those looking for a quality caveman to pair with would automatically seek out the strongest, most battle capable male, who could kill wildebeests and rival tribesmen so the she and the offspring can survive (ironically, with acts of violence, including literally beating an adversary’s brains out, an act of protection and love for the woman). The images of males that women are interested in tend to feature images of strong men, not naked as men like to look at women, but in clothes that convey a status or role as providers and/or protectors, e.g. men in uniform, firemen calendars, etc. What’s attractive in the human male (for most) is more subtle and complicated, but it’s no less hard-wired.

So where does that leave men with permanent disabilities? I’m a guy who’s continually trying to find my way as man, and be a good man alongside severe disabilities in the mix, things like needing a ventilator and intact breathing tubes an inseparable part of my lived experience day-in and day-out and a real barrier. So I’ll speak to that—not meaning to say the path of the disabled male—I include the gay male here, similar challenges—is harder than other paths. And no denying it can be super difficult for women with disabilities given the ableist society we live in, and ambitions today rightfully dwarf the cavewoman’s (and not meaning to discount the struggles of those on transgender or gender queer paths either, which, in my view, is no less hard-wired a position than mine, as evidenced by the cavemen AND the animal kingdom). Of course, regardless of gender, everybody wants the same basic foundational things, to feel safe, wanted, needed, like they matter. This is just “write what you know,” about the lived experience of gender, not “gender theory,” and not intending to say the path of the disabled male is harder, but it is different, very different.

Evidence-Theory cartoon
Cartoon created by Nick, May 2nd, 2012

Women with disabilities, predominately, can still have the fundamental elements of female attractiveness society expects, there is obvious beauty abundant here (I admit, I’m biased in favor of disabled women) while men with disabilities have an incredibly difficult time being providers and protectors. Gimpy RomeoIt’s an uphill battle feeling valuable in any sort of male gender role a disabled guy has attempted to carve out. Men can have physical attractiveness too, no question, we can rock the good-looking symmetrical face with the best of ’em; but while that may open doors, it won’t take you far beyond that because everybody tends to, consciously or unconsciously, want men to be protectors and providers, and frankly so do I.  I don’t think women who want that from men are “superficial,” I see it as a legitimate, totally valid need. And focusing on what the man offers and actually does is, truly, less “superficial” than how men size up women, which, until a guy matures, will heavily tilt toward the body. Anyhow, to be useful in that way, protecting, providing, being a doer, taking specific actions, physical or not, that matter to someone, is a core thing in the male psyche (granted, “writing what I know” here does involve projecting forth my own feelings and perspective, but I do think a lot of this is universal across men).