Recommended: "Our Birth Story"

One of the gulfs between disabled people born with their disabilities, and parents of kids with disabilities, is how we think about the birth itself and that first discovery of disability. While all of us with disabilities can understand, intellectually, that it had to be one of life’s worst moments for our parents, we don’t want to dwell on that, because somehow that implies that we are one of the worst things to happen to our parents. We know that's not true either, but that can be hard to remember, given how many parents talk about it.

Meanwhile, special needs parents crave some recognition and understanding about what they went through … a connection and empathy that might be impossible for other parents to give. Even we, their children, can’t fully connect, because we have our own complicated issues with “that day” in the hospital.

All of which is just an overlong introduction to an extraordinary podcast episode I just listened to. It is called “Our Birth Story”, and it is the latest installment of Sawbones: A Marital Tour Of Misguided Medicine.

Sawbones is hosted by Justin and Sydnee McElroy, husband and wife. Justin is a podcaster and comedian, and Sydnee is a physician. Together, they take a humorous look at some of the bizarre twists and turns of medicine throughout history. Lately, several of their shows have been related to reproduction and birth, because Sydnee was pregnant with their first child. This episode is a departure because it is about their actual birth experience, and it is only funny in the sense that these two can’t help being funny … otherwise it is an amazingly vivid description of what happens to parents when things don't go according to plan in childbirth.

Their little girl Charlie is fine, so their experience isn’t a direct parallel to disability. However, I really felt that regardless of the ultimate outcome, Justin and Sydnee had a lot to say that I’m sure parents of kids with disabilities can relate to, especially the “white knuckle terror” of knowing something is wrong and being powerless to do anything about it … and not even being told what’s happening. At the same time, Justin and Sydnee are smart and level-headed people, so they are able to view their experiences with at least some objectivity, which makes the podcast bearable and informative.

Listening in my car, I though a lot about my parents and their "that day" ... including my father, who was a Pediatrician.

I would be especially interested in what any special needs parents think of the podcast.

Video Of The Day: Mannequins 2, JCP Edition

Visit NBCNews.com for breaking news, world news, and news about the economy

'We're all different': JCPenney shows unique mannequins in New York storefront

Jane Weaver, Today, NBC - July 15, 2014

Via Words I Wheel By.

I am glad to see this, but I am surprised they didn’t mention the similar project done in Zurich, Switzerland last Fall. The video for that made me cry for real, not out of pity, but because of a strong feeling of identification with the participants. One thing I like about this project is that they don't focus on disability per se, but on differences ... including weight and height.

A Little Moxie Summer Blog Hop - "Talking Raw, Talking Real: Challenges Related to Disability"

Most of the time, the challenges related to disability aren’t about disability alone. In my experience, and observing the experience of others, 75% of the time, it's actually about disability and something else:

Social stigma … Everything from mild awkwardness and ignorant comments, to open ridicule and bullying. They invade our space when we least expect it, an it hurts in a very personal way. In some ways, it’s the least significant problem we face, but in other ways, it’s the most painful.

Discrimination … Prejudice put into action, where it concretely affects our mobility, inclusion, and opportunities. People can think what they like about disabled people, but prejudice causes real, lasting harm when we lose a job opportunity because of it.

Poverty … Money can’t buy happiness, but it can buy off a lot of the hardships of many kinds of disabilities. Money can buy ramps, lift vans, decent wheelchairs, tutors and therapists, and pay other people to help us do the things we can’t do for ourselves. The flip side is that when we don’t have money, everything about our disabilities becomes exponentially harder.

Segregation … Being cordoned off into “special” programs of any kind may seem to have superficial advantages, but the harm is deeper and longer term. Separate is not only unequal, it is artificial, inauthentic, and it provides cover for neglect and abuse. Plus, segregated programs are almost always maintained for the convenience and comfort of people other than the actual disabled people they’re supposed to serve.

Lack of agency … In little ways and big, we are often treated as something less than complete human beings. Most people don’t realize they are doing it, and very few believe we are literally inferior. Yet, we are treated like a bundle of symptoms and behaviors. Adults are treated like children or tweens. People speak to the person with us instead of directly to us. Even our families sometimes seem to forget that we are people ... not symbols or tests of their moral character.  In many ways, the biggest challenge of disability is simply to assert and maintain our basic personhood.

Disabilities impose themselves every day, and occasionally they can be very sharp and punishing. But disabilities are different and distinct from the hardships associated with them that are imposed from the outside. The good news is that most of them are easier to fix, both personally and systemically, than most disabilities. It doesn’t always seem that way, and lots of disabled people would disagree, I think, but I believe it is true.

Disabilities are largely beyond our control. Human behavior is not. The real challenges of disability are the “… and other things” that go along with it.

A Disability "Red Flag"

I think I have identified another one of my personal Disability "Red Flags":

It is when people with disabilities say how much they wish or hope for a cure or significant improvement in their conditions, not because they want to live easier and be more functional, but because they want to look more normal and be more socially accepted. I’m not against medical research, new therapies, or miracle technologies. What troubles me is the idea of a person taking all the responsibility for ending stigma and discrimination on themselves ... like a gay person answering homophobia by trying really hard not to “act gay”, or like an African-American who hates her heritage more than she hates racism.

Either way, it’s a choice, and I try not to judge anyone’s personal choices or motivations. I also believe it’s quite a different matter to pursue improvements that stand a decent chance of making your life easier and freer in a practical sense. Walking is, in many cases, (though not all!) more convenient than wheeling. It also helps to be able to control your disability-related quirks and oddities at times, in order to make necessary interactions easier.

But when you read articles and hear news stories about new treatments and technical breakthroughs that promise "hope" for disabled people, you tend to hear more about people’s self-image and social acceptance than you do about practical benefits.

I just feel it’s galling for people with disabilities to feel like they have to “fix themselves” to fit in better, a priority that seems to relieve everyone else of the responsibility for, you know, being shitty to disabled people. Sadly, it seems like I hear this the most from parents of little kids with disabilities, and from older children and youth with disabilities. Shame and self-loathing runs deep, and “hope” for this or that condition seems to be all about a vision of some perfect “normalcy” that’s mostly a mirage, and not even a very important goal in the long run.

"Let Us Now Praise Famous Men"

Pioneer in aiding disabled mourned

Bob Gardinier, Albany Times Union - June 28, 2014

I ran across this article almost by accident, but I found it fascinating in I’m sure a completely different way than what was intended.

Let me say first that I don’t know anything about Mr. Fitzgerald, or about the agency he apparently gave so much of himself for, the Center for Disability Services in Albany, New York … not that far, really, from where I live. For all I know, he was probably completely sincere and well-intentioned, as selfless as his friends suggest he was, and even progressive in his view of disability, at least in the context of his life and times.

That’s just it though. The whole article feels diffused with a very old-fashioned, back-slapping, golf-tourney, rich guys doing good vibe that seems more in line with a Jerry Lewis Telethon than with an ADAPT protest, or even a modest Center for Independent Living.

I’m really not trying to be mean, but the article, unintentionally highlights not only a difference in philosophy … the Center has a sheltered workshop where Mr. Fitzgerald’s own son works, for God knows how long … but in tone and personality between “your grandfather’s” disability agency, and the consumer-driven, activist organizations of today. Except that it isn’t really yesterday and today. In many cities and towns the two kinds of disability agencies live side by side, rarely battling each other directly, but eyeing each other with suspicion and perplexity. In general, they also tend to have entirely different bases of support, and cleanly separated spheres of influence and awareness.

Anyway, I realize that’s a lot to get from a the obit for a local benefactor, but boy did it come through to me loud and clear.

Great Video Series

A little over a week ago, I ran across this video on bullying by the Australian group, Cerebral Palsy Alliance. I was working on something else at the time, so I put it my reading queue, and promptly forgot about it.

I finally just watched it, and I'm really impressed. Most disability awareness campaigns are targeted mainly to non-disabled people. These videos deliver separate messages to two different audiences at the same time ... greater understanding for non-disabled viewers, and believable, credible empowerment for people with disabilities, especially those who are young.

Other videos in the “Making It Real" series:

• Personal Hopes
• Relationships
• Everyday Challenges
• Achieving Your Goals
• Building Confidence

A Little Moxie Summer Blog Hop - "Coming to Terms with Disability in My Life"

This will be an uncharacteristically short blog post for me, because I kind of deal with this issue of “coming to terms” all the time at my blog, Disability Thinking. Just visit there and browse, and you should be able to figure out how I have and have not come to terms with disability in my life.

I will only add this …

I am 47 years old. I have had disabilities all of my life. I have been exposed to a wide range of different ideas about disability, approaches, disability cultures, and philosophies. Yet, although I mostly relate to a generally “positive” view of disability, I can’t entirely buy into the idea that disability is “great” or “awesome” or “special”. Nor does it feel right to say it’s a “tragedy” or “handicap” or “illness”.

To me, disability isn’t a good thing, or a bad thing. It is just a thing. I used to think that was a cop-out, but more than ever, I really think that’s my answer … the terms I have come to with disability. Any other answer seems off-target and reductive.

Best Article On Disability By A Parent

For Hire: Dedicated Young Man With Down Syndrome ... A Father Reflects On His Son’s Search For Employment

Michael Bérubé, Al Jazeera America - May 25, 2014

(Via the Autistic Self Advocacy Network Tumblr blog).

This is the best first-person article on disability by a parent of a disabled child I have ever read. It is very personal and anecdotal, but also connects one young man’s experiences with larger policy issues. Mr. Bérubé keeps the article focused on his son, Jamie, while also expressing how he, Jamie's father feels.

The picture he paints isn’t entirely gloomy. Age 21 isn’t quite the “cliff” it is sometimes said to be for disabled kids. There are systems in place with decent and improving philosophies behind them. Yet, so many disabilities … especially it seems intellectual disabilities … seem still to still baffle us, probably unnecessarily.

This is personal journalism at its best.

I Love My Ventilator ... And Other Thoughts On Disability Gear

Last Friday, I said that I love my ventilator, the machine I use every night that helps me breathe. I have almost an affection for it. It comforts me. I always feel a little insecure if I’m not within an hour’s drive of it … even though I don’t use it during the day. I added that I felt the same about my electric scooter when I used one to get around campus when I was in college.

I wondered what other disabled people feel about their various items of “disability gear”. Here are the responses I got on this blog and over on my Tumbr blog:

"I've had a power wheelchair for years after having used a scooter most of my life. I definitely like the wheelchair better by comparison, but I would shy away from attributing real emotion to assistive technology. It's great thing it's available, but I view it as a tool. Hope others chime in.” — Rob J. Quinn, I’m Not Here To Inspire You

"I am coming to terms with my new limits and getting used to the cane, and very very slowly coming to terms with the idea of using a chair and reclaiming my life. The process has been incredibly hard. Fucking pride man… and like this long standing idea that if you can walk, you shouldn’t use a chair.” — Tattered Obsidian

"I make my wheelchair a fashion statement. It’s my best accessory. It’s my lifeline to independence - without it, I’ll be so dependent. Plus… I use it to get the hot guys to notice me. ~ V :)” — Vilissa Thompson, Ramp You Voice!

"We don't have a lot of specialized equipment for our 18yo daughter with moderate cerebral palsy any more. There were days when our whole house was overflowing with special cups, scissors, pencils, leg braces, hand splints, bulky seating equipment, huge car seats, bath chairs, nesting benches, switch toys, and over-sized exercise balls. There are still things that aren't typical for an 18yo - sports cups instead of glasses, a bib loaded with paper towels to soak up spills, a retractable badge hanging from her belt with a washcloth to wipe her mouth, a basic bath chair available at any drugstore. But, I have to say, it's nice to have less special stuff and less clutter. Don't get me wrong, I actually do love what we have, but only because they serve a necessary purpose.” — Kerith Stull, Brielle and Me

"My son when he was younger use to use a walker but when he started Kindergarten he began to use arm-band crutches. He has Arthrogryposis but it only effects his lower part of his body. He has very little muscle in his lower limbs. We keep an older set at the top of our stairs so he doesn't have to crawl around. We've had to purchase 4 so far. We can adjust them as he grows but it only goes to a certain height. The problem we have come across is the rubber bottom part of the crutches wear out quickly and aren't easy to find. We try to buy extra so we have them on hand. I tried to find a place locally that we could donate some of his leg and body braces from when he was younger but I guess it's a liability to use used equipment. We do have a wheelchair as well for when h e's had surgeries or when he breaks a bone, which he does often because he has brittle bones. But we pay a monthly rental fee for it. Our goal has always been to make easy and as normal for him around the house. He's now 9 years old and is pretty strong!” — Mari Blair

People appreciate the practical value of adaptive equipment. Wheelchairs, crutches, and all kinds of other devices make life easier for disabled people. If you have an impairment, like not being able to walk, then equipment like a wheelchair is liberating.

On the other hand, we live in a society where assistive devices still tend to symbolize disability. You still hear people talk about someone being “wheelchair bound”, and “throwing away the crutches”, as if the equipment is the disability. While it is natural for people adjusting to new disabilities to feel negatively at first about adaptive equipment, I think that people who continue feeling awful and stigmatized by their adaptive devices tend also to have negative feelings about their own disabilities, and maybe a bit of self-loathing, too.

One factor I think gets overlooked, however, is the quality and fit of adaptive equipment. A heavy, one-size-fits all rental wheelchair is not as liberating as a custom fit lightweight. A hearing aid that doesn’t work properly can be literally a pain. Having a bunch of gadgets you didn’t choose, that someone else told you would be useful but aren’t, can be demoralizing.

In her later years, my grandmother was, as she would say, “lame”. She and my grandfather lived in a nice condo in Florida, but she rarely went out, and my parents were pretty sure it was because she didn’t like being seen in a wheelchair. Mom and Dad interpreted that as Grandma being vain and old-fashioned, and it saddened them to see her cooped up for what they felt was no good reason. "Fucking pride man."

They may have been right. Grandma was born before the 20th century started, and she was, in many ways, “proud”. Thinking back on it, though, I wonder whether part of the problem was that in the late ‘70s she simply didn’t have access to adaptive equipment that wasn’t cumbersome and unnecessarily ugly. I’d love to travel back in time and give her a sharp-looking, powered Hoveround or Jazzy. Grandma had a walker, too, that was functional but drab. I wonder if she would have enjoyed one in cool colors … maybe some pinks. She liked pink.

I think it’s important for both disabled and non-disabled people to remember from time to time that disability gear is meant to be liberating, not a millstone. A walker is not a disability; it makes a certain kind of disability easier to live with. And it’s not crazy or some kind of conscious stance that many of us feel close to our devices. We don’t like strangers randomly touching and handling our wheelchairs, and when our canes and walkers are taken from us we feel incomplete and vulnerable. My ventilator was portrayed to me as an unpleasant last resort before I got it, but I feel like I am really at home when it’s there … even if I’m in a motel room in a strange city.

I’ve never decorated any of my adaptive items, but you know, my tracheostomy tube uses disposable fabric ties. Maybe one of these days I should see how it feels to wear one in a chosen color other than hospital white.

Still Seeking Comments ... How Do You Feel About Your Disability Equipment?

A couple of people have responded to my request for comments on how disabled people feel about their adaptive equipment. In a “Work In Progress” post on Friday, I said that I Love My Ventilator, and that when I used to use a scooter, I didn’t just use it, I enjoyed it and felt an affection for it. I’d like to hear from a few more people, because I know that there is a wide range of feeling among people with disabilities for the equipment they use.

Just because I love my disability gear doesn’t mean that’s the “right” way to think about it. There are valid reasons for people to feel indifferent or even hostile towards the equipment they use to adapt to their disabilities and surroundings. Also, I think most of us have both good and bad associations at various times. Not to mention that how well or poorly equipment is designed, and how it looks, has to make a difference.

So seriously … what do you feel, if anything, about your wheelchair, walker, cane, hearing aid, scooter, ventilator, or whatever “specialized” items you use specifically related to your disability? The idea is that I’ll include comments in my finished post on the topic, to go along with my own thoughts.

You can comment below, or if you prefer, send me an email.

Mia Mingus On "Crip Solidarity"

Wherever You Are Is Where I Want To Be: Crip Solidarity

Mia Mingus, Leaving Evidence - May 3, 2010

I just mentioned in my last blog that the Stella Young essay Dear 16-year-old Stella is my favorite piece of writing on disability. I think this post by Mia Mingus is now the runner up for me. For those of us with disabilities, it challenges us to be better “crips”. I think it can also help explain to non-disabled people … and disabled people just starting to explore what disability means ... what, exactly, “crop culture” is supposed be.

About Our Bodies

Why I No Longer Apologize For My Crutches

Natalie E. Illum, Guest Writer, The Body Is Not An Apology - April 28, 2014

Via The Disability Fashion Project.

This is another great article on the very tricky, hard to explain, but absolutely crucial issue of disabled people learning to recognize and then shed shame about our bodies.

Don’t let the art world and poetry slam setting of the essay distract you. You don’t have to be a poet or a performance artist to grapple with the same issues Natalie Illum did, or to make the progress she has. One part of her story that I think might be essential, though, is having a friend or even just a casual acquaintance ask the right question or say the right thing at the right moment that helps penetrate the walls we build up around us and get to the kernel of the issue. Do we love, do we accept, do we have any positive feelings at all about our bodies, or not?

For most of my life, I assumed that it was enough to appreciate my own mind, and sort of forget about my body. Now I’m not so sure that’s a choice you have to make, just because you have physical disabilities. It may not even be a sustainable choice. Fortunately, it seems like one of the few things you can change about yourself, without needing other people to change as well. You can just start appreciating your body as it is, and having some fun with it’s unusual shapes and angles. That positivity can often rub off on others, and they in turn will be more positive about your appearance. But even if they don’t, it doesn’t really matter because you made the key change in your own head.

"Not The Fun Kind"

From the Demonically Disabled Tumblr blog.

I’m going to break my own rule and add something to this photo. It starts with a comment on the photo from the blogger / selfie-taker herself:

"I never ever ever ever ever ever want to walk again. That was hell. And not the fun kind.”

I am aware that for some people, the notion of disabled people NOT wishing to be less disabled … of wheelchair users NOT working their asses off to walk again someday … is quite controversial. I dare say for quite a few people it sounds utterly irrational, either “crazy” or some sort of contrarian stance. Well, for some of us it is somewhat philosophical. But for others, it is completely practical; doing things the “normal” way hurts, and is just less practical, than embracing tools and adaptations. I walk, it works for me and my everyday needs, and I am glad for all the surgery and physical therapy in my early years that made that possible. But, I used a mobility scooter when I was in college, and when I have to travel through an airport, gimme that wheelchair man.

Finding Our History

Have you ever run across a website that perfectly matches with one of your passions, and wondered, “How is it that I’m only finding this now?”

That’s exactly how I felt when I found my way to the “It’s Our Story” YouTube Channel … a collection of interviews with the people who have witnessed and participated in the key events of the disability rights movement. I’ll be back to visit often, I think, because there are far too many interesting-looking videos to watch in one sitting. I won’t post all of them here, because if you are interested you should bookmark the site and browse it yourself.

I will, however, post this video interview with Jennifer Keelan, who participated in what has become known as the “Capitol Crawl”, a key demonstration aimed at passing the Americans with Disabilities Act.

This video, and the incident it depicts, fascinates me. It is an amazing example of how difficult it is to predict how photos and footage of disabled people are going to be viewed. Will people feel pity, or will they be empowered? Are the two mutually exclusive? Will a deliberate demonstration … some might say a stunt … focus attention on a cause, or distract from it. As it happens, the whole thing worked on just about every level, but I bet with a few slight differences it could have easily failed.

I think this was one of those rare incidents when peoples’ stereotypes and sympathies about disabled people were harnessed to accomplish something constructive … to produce change, not tears. And if there were tears, they were tears of strength and pride, not pity. Very few organizations seem able to pull this off … and ADAPT are masters at it. And, let’s not forget that Ms. Keelan was right.

Here is a clip of the "Capitol Crawl" by the PBS show "Independent Lens". The "little girl" climbing the steps is Jennifer Keelan.

Disability Dialogs: Accessibility

Variations on the following exchange happen all the time ...

Disabled person: “Society is ableist! Disabled people are oppressed by ableism!”

Non-disabled person: “You’re exaggerating. Things are so much better than they used to be!"

Disabled person: “#$%&! All the restaurants in my neighborhood have steps, and the ones with ramps have inaccessible bathrooms!”

Non-disabled person: “Really? That can’t be right, it's against the law!”

Disabled person: “Are you kidding me?”

Non-disabled person: “What?!”

Disabled person: “Never mind …”

Non-disabled person: "You should really speak to the managers about this …”

Disabled person: “You think I haven’t tried?!”

Non-disabled person: “Well, if you talk to them like that, you won’t get anywhere …”

Disabled person: "#$%&!”

Non-disabled person: “Well, if educating the owners doesn’t work, just file an ADA complaint. ”

Disabled person: “You think that will do any good? The only way it would help would be if I could afford the time and money to sue, but I can’t. Pretty much nobody can.”

Non-disabled person: “ … “

Non-disabled person: “You still shouldn’t be so angry. Nobody will listen to a chronically complaining hothead.”

Disabled person: “But, society is ableist! Ableism holds me back all the time!”

… and so on, and so on.

Quite often, the second person in the conversation is another disabled person who has also experienced discrimination and architectural barriers, but has a fundamentally different view and temperament about them. I’m pretty sure this is true because I have been that other disabled person who objected to anger and tried to explain to another disabled person how the ADA works.

Rare Disease Day (Better Late Than Never)

Friday was Rare Disease Day. I thought for a moment or two about posting something on my “disease”, then forgot. So, here, belatedly, is my personal perspective as a person who has a “rare disease”.

One reason I forgot about Rare Disease Day is that I have never thought of my “condition” as a “disease.” Even before I consciously knew anything about the “Social Model” of disability, I tended to view my disability as something more like race or ethnicity than like cancer or malaria. I type that, and ask myself, “Really? Have you always felt that way, even as a child?” And I think about it, and I say yes. To me, even as a child, my disabilities felt like something that set me apart more socially than physically. Mind you, I rarely felt severely set apart. I have been very fortunate to have lived in a series of fairly welcoming communities. But, the social divide has, at least until recently, felt more significant than my physical differences.

That said, even my physical differences never felt to me like “disease”. They never felt like something from the outside that had attacked me, or something I could conceivably get rid of. That’s probably what I and lots of other disabled people mean when we say that our disabilities are “part of us.” It’s probably the most persuasive argument for why the language pendulum is swinging away from saying “people with disabilities”, back towards saying “disabled people”, at least for some of us.

At any rate, I have never, to this day, been able sustain any real interest in Arthrogyposis as a “disease”, a “condition” or whatever it should be called. I am very interested in how my spine curvature affects my lung capacity. I have strong and mixed feelings about how my body looks because of Arthrogryposis. I wish every day, frankly, that I could breathe more efficiently so I wasn’t so easily tired. It would be nice to have a bit more upper body strength. I don’t actually wish I were taller than 4’ 1” … my height is probably the part of my disabilities that bothers me the least … but I have to admit that I occasionally speculate on what it would be like to be, say, 5’ 5”. I am grateful that I am able to know enough about my disabilities to integrate them into a workable understanding, and that for a variety of reasons, I have never felt like my disabilities made me a lesser person.

The fact that all of these traits in me derive from a genetic condition called Arthrogryposis doesn’t interest me in the least. I know that a lot of people attach great importance to their “diagnosis”, and maybe I would, too if I didn’t have one. But as it is, my particular diagnosis means almost nothing to me. It’s the practical consequences that matter to me, and it’s always been that way for me as long as I can remember.

Of course, I can see how Arthrogryposis could be intrinsically interesting. The fact that it doesn’t interest me doesn’t mean it isn’t interesting. So, here’s a Wikipedia link to Arthrogryposis, which I, myself will read and see if I learn anything new.

Join The Vigil

I am about to sign on to the virtual part of the vigils to remember disabled victims of filicide–disabled people murdered by their family members or caregivers.

You can log in anytime between 3:00 and 9:00 PM Eastern Time today (March 1, 2014), by clicking the photo below.

Addendum:

According to the Autistic Self Advocacy Network, live, in-person vigils are being held today in the following cities:

Sacramento, CA

San Francisco Bay Area, CA

Fort Myers, FL

Atlanta, GA

Chicago, IL

Boston, MA

Baltimore, MD

Towson, MD

Houghton, MI

Missoula, MT

Robbinsville, NC

Lincoln, NE

Woodbridge, NJ

Reno, NV

New City, NY

New York City, NY

Rochester, NY

Syracuse, NY

Eugene, OR

Portland, OR

Pittsburgh, PA

Seattle, WA

Washington, DC

Halifax, Nova Scotia

Another Addendum:

Yet Another Disabled Child Killed By Family
S. E. Smith, xojane.com - June 19, 2013

Here is an excellent, hard to read, but important article that provides very specific context to this vigil. Please read it, especially if you are not sure what this Vigil / Day Of Mourning is all about. Thanks to Tumblr bloggers Wheeliewifee and Sunshine, Been Keeping Me Up For Days who posted and reflagged this.

Day Of Mourning

Day of Mourning 2014

Saturday, March 1st, the disability community will gather across the nation to remember disabled victims of filicide–disabled people murdered by their family members or caregivers.

Autistic Self Advocacy Network - February 24, 2014

Some facts from the Autistic Self Advocacy Network:

"In the past five years, over forty people with disabilities have been murdered by their parents."

"In the year since our last vigil, our community has lost at least ten more victims."

"In January of 2014, two more disabled people were lost in murder-suicides at the hands of their parents: Damien Veraghen, age nine, and Vincent Phan, age twenty four."

The deaths are bad enough. The reason disability activists are angry about them and having vigils is how the deaths are often portrayed in the media and treated by the judicial system.

Too often, news stories portray the killings with more sadness than outrage. It's sad, you see, that the murdered person had such awful, trying disabilities that their caregiver just couldn't take it anymore. The there's my personal favorite situation ... where the killer is a very old man or woman and the disabled "child" they kill is a 50 year old adult who has been "cared for" by just their parents their entire lives. It's sad because the poor old man or woman just didn't know how their baby would be taken care of when they die. Far better to kill them now than to have them cared for by *gasp* strangers!

Then, juries and judges seem to go out of their way to lessen the consequences for the killers. The law can't condone murder, no sir! But, wink, wink, shake of the head, we understand. NO ONE can know how hard it is for caregivers, so who are we to judge? He was a saint to dedicate his life to this person to begin with. It's sad that in the end he cracked, but what's to be gained by punishing the poor old guy?

The thing is, a lot of these sentiments make sense, once you view the person murdered as something less than fully human ... a dead weight “vegetable", a bundle of unsolvable logistical problems, or a screaming, irrational hurricane that simply won't act normally, ever! Except that they are all fully human, with self awareness and points of view. Where is the outrage for their loss of life, the end of their existence and potential?

Still and all, I don't care, frankly, about seeing these killers literally punished for what they have done. I care about the message it sends when they are let off the hook in the public consciousness.

Organizations involved in the nationwide vigils include:

The Autistic Self Advocacy Network, ADAPT, Not Dead Yet, the National Council on Independent Living, and the Disability Rights Education & Defense Fund.

Check the article linked above for a list of places holding vigils on Saturday, March 1. You can also participate in a “virtual” vigil via a Facebook Page.

3 Rebukes To Bullying

I can't believe I'm saying it, but these three videos are inspirational! I mean “Inspirational” for real. Not “Inspiration Porn”, not revoltingly sweet, not begging for sympathy. These videos move me, and have something of substance to say. The second two I have posted before. The first one I saw just today, from a link and recommendation by the founder of the website Shared Abilities.

"Beautifully Different by Charisse Hogan"

This very personal video is the one that comes closest to what I’d call a traditional “Inspirational” video about disability. It expresses a simple, positive message in a heartwarming, non-confrontational way. It has pleasant music and adorable kid drawings. However, several things about this video set it apart and gives it bit of a sharp edge.

The underlying theme, bullying, is anything but cheerful or simplistic. She doesn't hold back from telling about the worst, with specifics.

Charisse’s positivity is totally earned and authentic. She has been through horrible experiences and is recovering, which can’t be easy and should not be taken lightly. Her optimism isn't glib.

The video makes it clear that the horrible experiences were caused by other peoples’ behavior, not by Cherisse's disability. Her understanding of this may be a little bit unformed just yet, but she’s young, and clearly on the path to viewing her disability as a part of herself she doesn’t have to be embarrassed about or ashamed of. I can't avoid being a little personal and paternalistic here. I recognize so much of myself at her age in Charisse. At the same time, like a parent, I want to tell her about all the amazing opportunities for further growth and pride that are available to someone as poised and smart as she appears to be.

"Fucking perfect anti bullying"

When I first realized that Charisse’s video was about bullying, I immediately thought of the “Fucking perfect” video, by an amputee YouTuber who is: a. Around the same age as Charisse, and b. has been bullied and made a video to address that. It is very striking that the messages of the two videos are almost identical, but their approaches are so different.

Using the words of the Pink song, this video is positive but also confrontational. It's not just because the word "fuck" is used. With or without that bit of judicious swearing, it is defiant. I don’t know much of anything about this young woman, any more than I can say I know about Charisse, but I could well imagine that this girl might have both fans and detractors among her high school teachers. Whereas Charisse strikes me as the kind of kid all but the most burned-out teachers love, I can see this young woman pushing the envelope from time to time. Hopefully, there are teachers, family, and friends around her who can appreciate a disabled person who isn't cheerful 24/7, who bites back on occasion.

Neither of these young women is better or more “appropriate" in her approach than the other. In fact, what’s so satisfying is that based on their videos, I like and respect both of them so much, each for different reasons and in different ways. It's a cliche I suppose, but they seem to represent the Yin and Yang of disability pride.

"Pro Infirmis «Because who is perfect?»"

Meanwhile, the "Pro Infirmis" video is in some ways a rebuke to a more passive, adult version of bullying … the fear, loathing, and rejection of disabled bodies. More importantly, the video focuses on the fact that even the people who have disabled bodies often subtly buy into the prejudices against them.

I think it helps to know, too, that the participants are all successful professionals in Switzerland, where the project took place. So, each of them, arguably, is already among the most confident, self-actualized disabled people in their communities. Yet, they all are so clearly moved and changed by seeing their mannequins unveiled. For a moment, the hidden wounds of low self-esteem are revealed, then almost almost immediately afterwards healed a bit by seeing and touching the mannequins. As I mentioned when I first posted this video, seeing one of the models actually give her mannequin a hug and a pat just about made me cry. This is sentiment much deeper and more profound that surface sentimentality.

People of all kinds crave inspiration and empowerment. While I will continue to call out “Inspiration Porn”, I don’t want to become hardened and cynical about all efforts to convey positive messages about disability. It seems like there are certain techniques and themes that make for really moving videos about disability, that are truly empowering and not exploitative or sentimental.

One key I think that I haven’t mentioned is each of these videos was either created by people with disabilities, or featured genuine, candid responses from people with disabilities. They are not passive objects in these videos, they have unique, individual voices. That makes all the difference to me.

Alex and Frederic Bilodeau

Alex Bilodeau shares special moment with his brother after winning gold (with video)

NBC Olympics - February 11, 2014

Aw, crap. Here we go again. Trying to figure out what I feel about Canadian Olympic Freestyle skier Alexandre Bilodeau and the way he “credits” his brother Frederic, who has Cerebral Palsy, as being his “inspiration” to achieve … as of Monday … two Gold Medals?

I was excited in 2010 to hear about the Bilodeau brothers for the first time, but even then there was a “disturbance in The Force” … an unsettling feeling that there was something just a bit wrong about this. Maybe not about the men themselves or Alex’s achievement, but about the story Alex and his family were telling, and how the schmalz masters at NBC Sports were distilling it even further to a more syrupy brew.

If you are not a Winter Olympics watcher, here’s the gist of the story:

Alex’s older brother Frederic has Cerebral Palsy. When Alex first rose to prominence at the 2010 games in Vancouver, he went out of his way in every interview and profile segment to say that his brother was his main inspiration to persist in his commitment to his sport. In turn, Frederic was portrayed as being Alex’s #1 fan, cheering him on at every event. We saw Frederic a lot in Vancouver, because Frederic’s enthusiasm and love for Alex … and Alex’s obvious love for his brother Frederic … became the animating theme of Alex’s story.

I can’t remember exactly how I felt about this in 2010. I know I wrote something about it, but that was on my old blog which is now gone. I think that I admired what I saw then as a loving relationship of equals between Alex and Frederic, while I cringed a bit at some of the sappy language used by the NBC narrators, and by Alex himself … though I might have cut Alex some slack since he was speaking English as a Francophone Canadian. It was a feel-good story to me, with reservations.

Then Monday night, there they were again, with what might have been archival footage from 2010 mixed in with new interviews and shots of Frederic cheering as Alex won another Gold. The same themes were there in full force:

• Whenever Alex feels tired or complains about having to train another day, he thinks of how hard “every single thing” is for Frederic, and that rekindles Alex's determination. 

• Alex does what he does in part because of all the things Frederic can’t do. Frederic can't be an athlete, so in a way, Alex is doing it for him. Frederic’s joys come through Alex’s achievements.

• Alex sees how difficult and even painful everyday tasks are for Frederic, and he ties that in with the hardships of training for the Olympics. If Frederic can do what he does and still be cheerful, Alex can certainly stick to his plan.

• Frederic is always happy, always cheerful, and never complains.

Four years later, nothing seems to have changed for Alex and Frederic. I think I’m the one who has changed. For better or worse, I am much more attuned to “Inspiration Porn”. I really kind of wish I wasn’t, because then I could just enjoy this without feeling queasy. I found myself questioning pretty much everything Alex and the narrators said.

• Frederic is disabled, sure, but I’ve seen far more profoundly impaired people than he seems to be. Can he really not achieve any of his dreams? Are all of his goals "not realistic?"

• Is it really such a great thing if Frederic has to live vicariously through Alex?

• Surely, Frederic must have bad days, when he's not cheerful. And if he doesn't, that's even more disturbing. Does he think that his family's devotion depends on him never complaining? If he had a meaningful complaint, would he even think of communicating it?

• Again, I want to let Alex off the hook for his choice of words in English, but I won’t let NBC off the hook for constantly saying that Frederic “suffers from” Cerebral Palsy. It may not be that big a deal in the grand scheme of things, but it’s so easy to fix. Just say he “has” Cerebral Palsy.

But the biggest question I had after Monday’s reintroduction of Alex and Frederic Bilodeau … the question I can’t stop thinking about … is whether anyone over the last four or more years has ever interviewed Frederic, or just asked him briefly for his actual feelings and thoughts, in his own words? None of the articles or TV segments I’ve seen have included any statements by Frederic himself. Everyone attributes motives and thoughts to him, but they don’t even claim to quote him.

Is that because Frederic can’t communicate at all? The subject doesn’t even come up, so we are left to wonder why we don’t get Frederic’s thoughts first-hand. Or worse, maybe we’re supposed to not even notice, because all the visual evidence we have is of the kind of person who most people don’t expect to have a voice. Four years ago, I don't remember wondering about this. He is literally made an object on TV … a symbol of ideas and values, not a real person. Icon might be a better term, since he almost appears to be a quasi-spiritual talisman for Alex and his family.

Here are some things that could be added to this story that would resolve a lot of these conflicting feelings, I think. If anything, they would add emotional weight to the story, even for people who already think it’s awesome:

• Do a direct on-camera interview with Frederic. It would be edited of course … like all of these Olympics segments are ... but it should be filmed if at all possible. If his speech is hard to understand, include the people who are good at understanding it … maybe his family? … and use their help to add subtitles. If he speaks only French, they’d have to do this anyway.

• If Frederic doesn’t speak at all, explain that to the audience, then convey the thoughts he does have some other way … such as the voiceover person reading his quoted words, however he communicates them.

• If Frederic is so cognitively impaired that he doesn’t even communicate complex thoughts … which I really doubt based on what we’ve seen of him … then explain that in a simple way. If that sounds like too much of a downer, then go ahead and point out that his body language speaks volumes.

• It is possible, I suppose, that the Bilodeau family thinks that being interviewed would be too scary or humiliating for Frederic. I hate to think of how some slick producer would try to persuade them otherwise, but really, Frederic has been used so much already to promote Alex’s exploits that giving him an actual voice can only be empowering.

• It is also possible that Frederic, himself, doesn’t want to be interviewed, for any number of personal reasons. That’s easy then … just say that NBC wanted very much to hear from Frederic himself, but that he’s too shy … or he didn’t want to take anymore spotlight away from Alex … or whatever.

It’s not that I think Frederic has some huge secret that people don’t want him to reveal. I don't think this is a deliberate conspiracy to silence him. I do admire what seems to be the genuinely sincere and devoted relationship the brothers have. There are plenty of similar families where the disabled brother would really be an afterthought or even an annoyance to a sibling. I don't think anything like that is going on here.

I just don’t like how Frederic has been passively bypassed. Intentionally or not, it makes him appear less than a full person. I’d like to hear from Frederic, or know the reason why not.