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).


Ablism: Idiotic Comments From Idiots

This post is for Blogging Against Disablism Day, BADD, 2009.

Blogging Against Disablism Day, May 1st 2009

As I noted here, ablism (discrimination based on ability) is one of the dumber forms of injustice.

It’s dumb because it’s based on falsehoods. Just because someone is in a wheelchair, doesn’t mean they’re deaf or have mental retardation. That man in a wheelchair you just (loudly) talked down to? Maybe that was genius astrophysicist Stephen Hawking, or one of the most talented computer programmers in your city. FAIL. You never know the amazing things people with disabilities are capable of, especially now that rapidly-advancing computer technology and the internet is increasingly leveling the playing field. Despite our abilities and achievements, we are too often condescended to, and treated as outsiders and lesser beings. What a waste.

Personally, I was able to enter college at age 16. Still, I am too often assumed mentally impaired, not taken seriously, or, most angering for me, am openly disbelieved by some of the hospital staff. This is where stupidity crosses the line from annoying to dangerous. “The feeding tube is leaking!” “No it isn’t.” “Yes it is.” “No it isn’t.” And when they discover the bed is wet from the leaking tube and they have to change the pads, my prior warning doesn’t even warrant mention, much less an apology.

My girlfriend (the amazing, the wonderful, the beautiful) blogs here about hospital ablism, people not taking me seriously, and one incident where a hospital administrator told her that allowing her to stay late to help me would be pointless because she’s disabled. Paradoxically, those who deal with disability professionally (those in hospitals, nursing agencies, etc.) are often the rudest, most anti-disability people you’ll meet, much worse than random people off the street or at work or school.

And now for rank idiocy! sorry to digress into silly season here, but I can’t let Blogging Against Disablism Day go by without posting the footage of Glenn Beck recently mocking Obama’s aunt’s disability (warning: contains extreme, brain-boiling stupidity). He’s essentially an 8th grade class clown, and here he’s mocking Obama’s aunt’s limp, and, more broadly, making fun of anyone sympathizing with people with disabilities. Ha ha, only a weak-kneed bleeding heart wussy would hesitate to deport a disabled person to Africa where nothing’s accessible!

Glenn Beck is stupid.
Glenn Beck is stupid.

Glenn Beck is an idiot.

Society needs less ablist idiocy, not more.


Government-Sponsored Ablism and Segregation Tears Families Apart

This post is for Blogging Against Disablism Day, BADD, 2009.

Blogging Against Disablism Day, May 1st 2009

There’s a dark part of America’s past (and present) that few are aware of: government taking children from their families and placing them in institutions.

It usually goes like this: doctors and social workers identify a disabled child, and advise the parents to send the child to an institution to get “the best of care,” from “the experts” and “be with kids like them.” Sometimes they’d recommend parents “move on with your lives.” In some cases, most of them decades ago, children were made wards of the state and whisked away from their families, for “their own good.” We’re talking about young kids here, 5-10 years old, many of which had mild disabilities, perhaps CP, MR or autism, not needing intensive supports at all.

That’s where the ablism comes in. Just because these children are different, or need some help, they’re assumed to need locking up in institutions. The doctors and social workers aren’t aware that “the experts” they’re letting raise these kids are the nurses and aides most likely to resent disability and the needs it involves (more work for them) and most likely to brutally restrict and control kids (to avert any possibility of trouble or more work for them). That means the kids will be horribly stunted: boys will never able to touch a girl’s hair, girls never able to “play doctor” with the boy across the street, and no one able to sneak an extra cookie (each meal is strictly controlled). And if they find a way to do these anyway, their reaching of these developmental milestones will be demonized; they’ll learn to hate their humanity, hate the needs and trouble their disabilities cause the staff.  They grow up in what’s essentially a special type of prison, where the natural experimentation crucial for human growth is banned. Not only are they segregated physically, they’re segregated from normal human contact, from basic experiences, from growth, from life.  While I wasn’t raised in an institution, I was exposed to this mentality, plenty. Special ed aides would grab my manual wheelchair and pull against me spinning the wheels, to prevent me from straying from them (and interacting with other children) during recess, to ensure my “safety.”


Each afternoon, at the city rehab hospital I live in, a yellow school bus pulls up out front. The bus is dropping off the institutionalized children who live here. You can’t help but wonder, “what will these children grow up to become?”  In my experience, from meeting those who moved to the community after the local institution (or “developmental center”) closed following the landmark 30-year-long Wyatt v. Stickney desegregation lawsuit, is that you can take the person out of the institution, but you can’t take the institution out of the person; their mind will, to an extent, forever be institutionalized.  They will never question authority figures, or take actions without the consent of an authority figure.  Some who got out are leading successful lives, with jobs and many things they could’ve never had in an institution (a great argument why more deinstitutionalization needs to happen NOW) but decades of success were robbed from them.  Their development was stunted, their independence has been stripped, and their mild mental differences became serious impairments, now requiring aides (they should maybe rename “developmental centers” “regression centers.”) It’s how they were trained, to be dependent.

America has set up this enormous infrastructure of segregation for people with disabilities, and it’s wrong. Why do we do this? It’s rooted in outdated, ablist ideas.  Institutionalization began in earnest in the 19th century, and picked up and expanded widely with the technology of the 20th century.  It was based on the false notions of that era, like the need to isolate the disabled in institutions far from the community in order to keep contagions at bay, put the vulnerable under care of “experts,” and the theory that “they’ll be happier around their own kind.”  The deeply-ingrained concept that “you’re different, therefore you should be segregated” is the pinnacle of bigoted ablist thinking, and it’s the underpinning of all this stuff.  And even with all these theories disproven, too many old institutions remain, sustained by inertia, special interest groups, and the lack of community-based alternatives.

It’s hard for me to blame the parents for consenting to send their kids to this fate when there are few, if any, community-based options to turn to. With little support, and confusion about what to do, it’s not surprising widespread institutionalization has happened. The state forces parents into a grim Faustian Bargain of necessity, something way too close to The Kinder Transport for America, forced to choose between sending children away, or leave them to some uncertain, horrible fate trying to raise them with no supports, no safety net.

Some families are now trying to find children lost to the gulags decades ago.

Kevin Hopkins holds a photo of his lost sister, from <em/>People Magazine
People magazine: Kevin Hopkins holds a photo of his lost sister

From People magazine:

(Newstands only; article not available on the magazine’s website.)

Families across the country are searching for loved ones with disabilities who were sent away to institutions years ago, often without warning or explanation.

Kevin Hopkins, 53, of Springfield, Virginia, is seeking his stepsister Janet, who was sent to an institution 42 years ago. “She was my best friend,” he said. “I just wish I could know where she was and see her again.”

Shawna Gagnon, 49, of Montgomery, Alabama said her sister Zena (Xena) was taken to a California hospital 43 years ago “where people hollered and were tied to the beds.”

Filmmaker Jeff Daly, creator of the documentary “Where’s Molly?”, has been working to find family links for the estimated 250,000 Americans who live in group homes or state institutions with no family contacts. He and the nonprofit ArcLink have built a relative search database that has already fostered more than 100 reunions.

Source: PatriciaEBauer.com: The Endlless Search

More institutions are closing under mounting allegations of human rights violations, but we need the community resources to make these outdated ablist models obsolete forever.  It’s obvious that the best environment for children is a natural family setting, but too many families are STILL forced to choose institutions, especially in the South (like my old home state of Alabama) where there are few community-based options to turn to.  The best thing for the child, would be to fund attendants from the community to assist the family in caring for the child in the home.  But home and community-based services (HCBS) are purely optional for state Medicaid agencies, not a mandated service under Medicaid law.  Meanwhile, it’s mandatory to fund the huge institutions that cost much more (often double or triple the expense) and (almost inevitably) neglect, set back and stifle human growth and potential.  The harsh inhumanity involved, demands change.  We are complicit in our government’s policies, and must demand better.  It’s time for the Community Choice Act, which would make providing home care mandatory for Medicaid too, and give people a real choice.  LET MY PEOPLE GO!!!

LET MY PEOPLE GO!! on silk, from jewishbazaar.com
"LET MY PEOPLE GO!!" on silk, from jewishbazaar.com

A CCA Banner, from Mark Boatmans Blog
A CCA Banner, from Mark Boatman's Blog

An ADAPT activist holds an Our Homes NOT Nursing Homes sign, at the DUH City Action, September 2008
An ADAPT activist holds an "Our Homes NOT Nursing Homes" sign, at the "DUH City" Action, September 2008