"Once More, With Feeling"

Spoiler alert, and while we’re at it, nerd alert …

This post is mainly a bit of self-indulgent fun.

A little over four years ago, I posted a comparison between two ways of parenting kids with disabilities, and Joyce and Giles’ approaches to “parenting” a vampire slayer on the TV show Buffy The Vampire Slayer.

Just recently, I re-watched one of my favorite “Buffy” episodes, “Once More, With Feeling,” which…

(SPOILER!, SPOILER!, SPOILER!)

… is a musical episode in which the main characters are under an enchantment that makes them involuntarily sing about the many difficult secrets they have been keeping from each other.

The songs sampled below are about several things, some of which have nothing at all to do with disability, even by analogy. But my “disability thinking” radar kept on pinging, so I thought I’d share. If you haven’t seen the show, read on or don’t, it’s up to you. But really this is going to be best for readers who are are familiar with Buffy The Vampire Slayer and have seen “Once More, With Feeling.” So …

(SPOILER!, SPOILER!, SPOILER!)

Depression

In the episode’s opening song, Buffy essentially sings about depression:

Opening number of the famous musical episode

Every single night, the same arrangement,
I go out and fight the fight.
Still I always feel this strange estrangement,
Nothing here is real, nothing here is right.

I don’t want to be
Going through the motions,
Losing all my drive.
I can’t even see
If this is really me
And I just want to be … alive!

Later the story, what Buffy is experiencing gets even more clear. And what I especially like is that her song includes how part of depression is having to cope with how others react to it, and how we end up worrying about that while we’re coping with our own emotions:

Sung Buffy, Spike, Sweet, Giles, Xander, Anya, Tara, Willow

I touch the fire and it freezes me.
I look into it and it’s black.
Why can’t I feel?
My skin should crack and peel!
I want the fire back!

So one by one, they turn from me,
I guess my friends can’t face the cold.
But why I froze, not one among them knows.
And never can be told.

And near the end of the story, Buffy lays it all out and shares how she’s really been feeling, whether her friends can handle it or not:

DISCLAIMER: NO COPYRIGHT INFRINGEMENT INTENDED!!! I don't own anything. Life's a show and we all play a part And when the music starts, We open up our hearts It's all right if some things come out wrong. We'll sing a happy song And you can sing along. Where's there's life, There's hope.

Life’s a show, and we all play a part.
And when the music starts.
We open up our hearts.

Where there’s life, there’s hope.
Every day’s a gift.
Wishes can come true.
Whistle while you work.
So hard. All day.

Give me something to sing about!
I need something to sing about!

Still my friends don’t know why I ignore
The million things or more
I should be dancing for.

All the joy life sends.
Family and friends.
All the twists and bends.
Knowing that it ends.
Well, that depends …

Unexpected Love

Tara’s love song for Willow has a layer of darkness, but the first part of it speaks beautifully about finding love and kinship when you thought you might never find either. This is something people with disabilities often experience, especially those of us who grew up with disabilities. Internalized ableism is powerful:

Sung by Tara

I lived my life in shadow, never the sun on my face.
It didn’t seem so sad though, I figured that was my place.
Now I’m bathed in light. Something just isn’t right.

I’m under your spell.
How else could it be, anyone would notice me?
It’s magic, I can tell.
How you set me free, brought me out so easily.

I saw a world enchanted, spirits and charms in the air.
I always took for granted, I was the only one there.
But your power shone, brighter than any I’ve known.

Standing In The Way

Giles, who is Buffy’s “Watcher,” her trainer and teacher, has over several seasons also become Buffy’s surrogate father. In his song, he worries that his deep desire to smooth her very difficult path has caused him to hinder her full maturity and independence. It’s something I know my parents struggled with at times. And I suspect a lot of parents of kids with disabilities will find Giles’ feelings familiar:

Sung by Giles

You’re not ready for the world outside.
You keep pretending, but you just can’t hide.
I know that I said that I’d be standing by your side,
But I…

I wish I could say the right words to lead you through this land,
Wish I could play the father, and take you by the hand.
Wish I could stay … but now I understand
I’m standing in the way.

I wish I could lay your arms down, and let you rest at last.
Wish I could slay your demons, but now that time has passed.
Wish I could stay … your stalwart standing-fast,
But I’m standing in the way.
I’m just standing in the way.

So I’m curious … what pop cultural artifacts resonate for other disabled people? Which TV shows, movies, or songs give you insight into the disability experience or reflect how you feel about it? Share if you like in the comments below.

Click here for all the lyrics to “Once More, With Feeling

Vlogging Update

I am still working on the idea of a YouTube vlog series on disability terminology. Sincere thanks to everyone who has sent me ideas on which words and terms to cover for each letter of the alphabet. Here is the list I have so far:

A    Ableism, Accessibility, Advocacy
B    Barrier-Free
C    Crip, Chronic Pain, Chronic Illness
D    Disabled, Differently-Abled, Discrimination
E    Erasure, Eugenics, Emotional Labor
F    Functioning Labels
G    Guide Dog
H    Handicapped
I    Inspiration Porn, Independent Living, Intersectional
J    _________________________
K    _________________________
L    Long Term Care
M    Medical Model, Marginalized
N    Neurodiversity
O    Oppression, Opioids, Outcomes
P    Prejudice, Privilege
Q    Quad Rugby
R    Representation
S    Self Advocate, Social Model, Special Needs
T    Transition, Transportation, Trauma
U    Undue Burden, Universal Design
V    Vocational Rehabilitation, Venn Diagrams
W    Wheelchairs, Willowbrook, White Cane
X    Xenophobia
Y    _________________________
Z    _________________________

There are still blanks to fill. Note also that I am planning on each episode covering no more than three words, so I won’t be able to cover every possible term. I will probably do Patreon-only episodes on any overflow terms, or terms that are heavily requested. Plus, i might do some biographical episodes for Patreon, on influential names in disability culture … alphabetically of course.

So when is all this going to happen?

I am hoping to record an introductory video this week, partly to promote the idea itself, and partly to experiment with the equipment and settings I’ve got, and practice editing. In the meantime, I still welcome feedback, technical advice, and of course more disability-related words and terms to fill in the alphabet.

YouTube Vlog Idea

Back in April, I wrote that I would be working on something new for Disability Thinking, possibly a vlog … a series of video pieces on YouTube. I’m still working on the format, but I think I have an idea to give the thing structure.

The tentative plan is to make short 15-20 minute videos that discuss one or two terms related to disability and disability culture, starting with words that start with an “A” and going through the whole alphabet all the way to “Z”. I would plan to share my own thoughts on each term, and probably invite viewers to send in comments ahead of time that can be shared. I did some brainstorming on terms, and here is what I have so far:

A    Ableism, Accessibility, Advocacy
B    _________________________
C    Crip, Chronic Pain, Chronic Illness
D    Disabled, Differently-Abled, Discrimination
E    Erasure, Eugenics
F    Functioning Labels
G    Guide Dog
H    Handicapped
I     Inspiration Porn, Independent Living, Intersectional
J    _________________________
K    _________________________
L    Long Term Care
M    Medical Model, Marginalized
N    Neurodiversity
O    Oppression, Opioids
P    Prejudice
Q    Quad Rugby
R    Representation
S    Self Advocate, Social Model, Special Needs
T    _________________________
U    Undue Burden, Universal Design
V    Vocational Rehabilitation
W    Wheelchairs, Willowbrook, White Cane
X    _________________________
Y    _________________________
Z    _________________________

I’d welcome any suggestions to fill in the alphabet. If it’s any good at all … meaning if anyone watches and listens … I would also consider some special programs for Patreon subscribers … such as Q&As and guest interviews.

Obviously I’m still working on this, but I hope to post something on actual introductory video on YouTube sometime before the end of this Summer.

"My Scoliosis Story"

X-ray showing a spine curved by Scoliosis, (not mine).

In January 1977, I had spinal fusion surgery to arrest and correct worsening Scoliosis. I was 10 years old. It was done at the Montreal Children’s Hospital, in Montreal, Quebec, Canada. It was the most serious and complex of the many surgeries I have had in my life to address various aspects of my underlying condition, which is Arthrogryposis. A little over five years ago, I blogged about what I remember from that experience:

Hospital Memories
Disability Thinking - November 7, 2013

I’m thinking about all of this again now because I recently discovered, quite by accident, several YouTube videos documenting Scoliosis surgeries and recoveries. For a few days I was sort of obsessed with them. So far, I’ve watched 8-10 series of videos. These are my two favorites

Julia Carlile // merseygirls

This is the first series I stumbled upon. It turns out Julia is semi-famous in the UK, as a member of “Britain’s Got Talent” competitors “Mersey Girls,” a dance troupe. But I didn’t figure that out until well into her series of videos documenting her scoliosis surgery.

TheScoliosisDiaries

This young woman and her mother are hilarious together, and in the best way. They really don’t seem to be putting on a show, and their attitude seems genuine, with only a very small dose of hipster irony.

The first thing I noticed about these, and the six or so other video series I watched, was that their surgeries and recoveries were much more effective and less arduous than mine were 41 years ago. They were sitting up less than 24 hours after surgery, and walking the next day. None of them were in casts or back braces afterwards. They all got dramatic curvature correction. Julia’s operation even left her spine flexible, so she can continue dancing. It’s just really impressive.

My biggest surprise is that I’m not a bit envious or resentful that their experiences and outcomes seem so much better than mine. Honestly, I’m not. I’ve asked myself several times … “Doesn’t this make you angry?” No. It doesn’t. It’s super interesting to me, but that’s all. I guess that’s good, but it’s also a little weird.

My other takeaway is that I’m reconsidering my feelings about “inspiration porn” and the usefulness of the Medical Model as ways for some disabled people to process their own disabilities.

Some of the “Scoliosis Journey “videos I’ve watched are heavy on inspiration … all about “fighting” Scoliosis, with soundtracks of self-esteem-themed pop songs, and bland platitudes about overcoming and perseverance. But just as many of the videos are more subtle, straightforward, and unsentimental, like the videos embedded above. The people in them talk about their feelings and thoughts in specifics. They present as unique personalities, with distinct points of view, experiencing real things, not players in an overworked narrative. They are also funny, and I find that makes a huge difference.

Granted, there is probably a lot missing from these videos. For instance:

- We see some fear and anxiety, but little hint of real confusion, or any sense of feeling trapped and forced into the procedure. Maybe that’s because they all are really okay with what’s happening, but it’s got to be a pretty common feeling among children and adolescents undergoing this procedure.

- There’s little to no evidence of real conflict or even minor friction with the hospital staff. Again, maybe that’s because everything went swimmingly. But on average, I would say it’s more common for there to be at least some disagreement or personality clashes during a hospital stay, even if it’s just irritation that never becomes serious. I wonder if it would even be possible to continue with this kind of documentation if some kind of dispute emerged. Would the hospital try to shut down filming that looks like it’s going to make them look bad, instead of cheerfully participating as they seem to do in these videos?

- Only one or two of the videos I watched included any hint of viewing Scoliosis as a disability, in the broader, social identity sense. For most of these people, it’s just a medical condition to be taken care of. A few seem to view their documentation as a kind of peer mentoring for other people with Scoliosis, which can be the start of a broader disability consciousness. But for the most part, the people in these videos don’t yet seem to have much of a sense disability identity, good or bad.

And you know what? They seem to be fine anyway. Maybe its a good reminder that while the Social Model and disability identity contribute to a full understanding of disability and addressing correctable injustices in society, they aren’t always necessary for individual disabled people to live a happy life.

As for “inspiration porn,” the key to me is that these really are the patient’s own stories, told from their point of view, even though it’s almost always parents behind the cameras. Even when family and friends appear on camera, they don’t try to make the story all about them. I am also struck by the fact that although these people are clearly approaching Scoliosis from a Medical Model point of view, none of them seem to view themselves as “fighting” Scoliosis, and the sure don’t seem to hate the way they are or feel flawed or ostracized. They’re hopeful of improvement, but not particularly desperate.

The only thing i would like to say to these young people about their experience is that I hope they never feel they have to be cheerful and positive all the time. I’m sure they aren’t always upbeat anyway, but I hope they don’t beat themselves up about it when the pain in their backs, or maybe the funny way people may still look at them, gets them down. Like I said, they seem to be doing just fine without a deep relationship with disability culture or an understanding of the nature of ableism. But it’s one thing to be a positive person. It’s another to think it’s your responsibility to be that way.

These stories are obviously not fully representative of Scoliosis, and certainly not of disability in general. But I think they might be useful examples of how to maintain a healthy mix of the Medical and Social models, and a healthy balance between sentimentality and practicality when telling your disability story … to others and even to yourself.

Starting Somewhere

Have you seen this yet? Watch it now ... (TW for heavy drinking and bleeped profanity):

Judy Heumann and her fellow activists begin the Section 504 sit-in, paving the way for the passage of the Americans with Disabilities Act. Watch full episodes of Drunk History now: http://www.cc.com/shows/drunk-history/full-episodes Drunk History airs Tuesdays at 10/9c on Comedy Central.

Honestly, I didn’t come up with this topic just as an excuse to post and talk about this amazing Drunk History video about an important event in disability history, the Section 504 sit-in. As it happens, I have been thinking a lot lately about an often heard phrase in disability advocacy, “You have to start somewhere!” Then this skit aired on Tuesday it seemed to me like a perfect answer to why the phrase ... though technically true ... has become so irritating.

“You have to start somewhere” shows up a lot in disability activism and culture discussions in which one group of observers complain that a disability-themed movie, TV show, advertisement, inclusion activity, or awareness campaign isn’t good enough, and another group defends it because although it’s not perfect, “You have to start somewhere!” Basically, it’s about different factions within the broader disability community calibrating progress in very different ways. What’s groundbreaking for some is often old hat or even retrograde for others.

This problem relates to more concrete matters, too. Last week, the U.S. House of Representatives passed H.R. 620, a bill that would institute additional waiting and grace periods for businesses to comply with the Americans with Disabilities Act. One of the underlying premises of the bill is the notion that the ADA and accessibility standards are in some sense new, unusual things that business owners can’t be expected to know about by themselves. They need advance notice that they might be out of compliance, and then extra time to figure out what they need to fix it. They shouldn’t be punished for not having their act together on these newfangled regulations.

That’s where the Drunk History skit comes in.

The 504 sit-in was specifically about accessibility, non-discrimination, and creating a more modern, progressive cultural understanding of disability. And it took place in 1977 … 41 years ago. Now, I’m just old enough to have lived as a disabled person in a time when the ADA, disability rights, and cultural representation of disability were actually new things. In the late ‘80s and early ‘90s, we were, in truth, “starting somewhere.” But we can’t still be “starting somewhere” 41 years later, can we? Obviously, progress takes time. It took another 13 years after the 504 sit-in for the ADA to pass. But at some point, doesn’t the clock sort of run out on what’s considered “new” and “just starting?” Doesn’t the simple passage of time suggest that we eventually should expect a better understanding of disability to be widely shared and integrated into the fabric of “stuff people just know?” This then allows us to move ahead to the next steps, and the steps after those.

I think one problem is that a segment of the disability community always views disability matters of all kinds as “new,” because a portion of the disability community is always going to be made up of newly disabled people and families of newly disabled people. It’s all legitimately new to them. That’s understandable. But eventually, it has to stop being new, even for newcomers. And knowing the actual history of these movements and ideas is key, because each new generation of disabled people is not, in fact, the first to experience disability or think up the idea of disability rights. It may seem that way to some of us, but that’s what looking around you, talking to other disabled people, and looking up a bit of history is all about.

It’s amazing that of all things, “Drunk History” has given us such a great opportunity to remind ourselves that the disability rights movement is well past “starting somewhere.”

Weekly Reading List

Two shelves of multicolored books

Well, semi-weekly, but who's counting?

America needs to decide: is health care something we owe our citizens?
Abbie Gluck, Vox.com - March 6, 2017

This first article isn't specifically about disability, but it discusses the deep background of ideas about health care, which is about the most immediately relevant policy issue for disabled Americans today. I think it's important to discuss the details of health care proposals, but it's also important for us once in awhile to ask what peoples' views are on the fundamentals, especially people who have set themselves up as opponents of more progressive programs like the Affordable Care Act. When all is said and done, do you think everyone should be insured, or is health insurance a reward for some formula of hard work and, I dunno, virtue?

Inspiration and objectification of people with disability - a resource for teachers and parents
Carly Findlay - February 5, 2017

Carly has done a great service explaining "Inspiration Porn" in a more accessible way for people who tend to resist the whole notion. In addition to being put off by the term, I think some people simply aren't familiar with the practice of deep cultural criticism, in which you dig underneath surface, apparent meanings to find the sometimes contradictory meanings below. When your disabled, you tend to get it instinctively ... it just feels wrong. But if you're not, it probably requires deliberate intellectual work. That's a big ask for most people, but Carly's work here should help a lot.

More Than A Villain: Ivar The Boneless And Disability
Alice Wong, Disability Visibility Project - February 28, 2017

Speaking of deep cultural criticism, here's an intellectually rigorous but also fun example of unpacking a disabled TV character. It makes me think about someday going back to my DisabilityTV Podcast.

Okay, it's not "reading," but here are a couple more examples of what things seem to mean vs. what they actually mean ... seemingly harmless questions and comments people make to disabled people that aren't so harmless once you think about them for a moment, especially from the vantage point of actual disabled people. I have to admit, the British sense of humor helps a lot!

Weekly Watching List: Convention Speakers

I have so many thoughts about the party convention speakers with disabilities we saw over the last two weeks. Instead of trying to make some definitive statement about what this sudden increase in disability representation means, I’m just going to post all of the available videos here, and suggest a few things to think about when you watch them.

1. The chronological list starts with Brock Mealer, who spoke at the Republican National Convention. As far as I know, he was the only speaker with a disability at the RNC, and certainly the only one who spoke about anything related to disability as a topic. If I missed someone, please tell me and I will gladly add them to the list.

2. The main question within the disability community seems to be whether the disabled speakers at the Democratic National Convention were signs of real political progress, or just weapons used to exploit one of Donald Trump more distinctive weak points. My thinking leans towards authenticity. I think the breakthrough people are talking about is more or less real. However, I also believe that a disabled speaker can be both authentic and “used" by candidates who may or may not fully understand or buy into disability issues. These positive and negative "spins" are not mutually exclusive.

3. Or, maybe this was all just politicized "inspiration porn." Again, I think something can have inspiration porn qualities, and also be genuinely empowering and substantive at the same time.

4. Individual reactions to these speeches and their meanings are also influenced by pre-existing feelings about the political parties and candidates involved. If you’re a Hillary Clinton hater or skeptic, it takes extra effort to appreciate the historic significance of the DNC's speakers with disabilities. And if you can’t stand Trump, it’s hard to see any value in Brock Mealer’s talk about his injury and rehabilitation. Maybe the best we can do is maintain a bit of loyalty to any disabled speaker, and try to at least entertain the thought that they are at least there because they want to be, and saying things they really believe, whether it completely works for us or not.

5. What is right response to Donald Trump’s offensive mockery of a disabled reporter last fall? It seems likely the DNC's inclusion of disability had something to do with rubbing Trump's nose in the incident, but how significant is Trump’s mockery? How is it connected to disability policies that can help or hurt disabled people much more profoundly than moral outrage and hurt feelings? How can we take non-disabled observers to the next step, from shocked sensibilities to a functional knowledge and interest in actual disability issues?

6. In other words, if this is a real breakthrough, where do we go from here? How do we capitalize on it, regardless of how pure and principled ... or compromised and sullied by partisan politics ... these convention appearances may have been?

Watch the speeches in the clips below, and share your reactions in the comments:

Brock Mealer

Demi Lovato

Anastasia Somoza

Ryan Moore

Dynah Haubert

Rep. Tammy Duckworth

Rep. Gabby Giffords

Rev. William Barber

Florent Groberg

I did leave out speeches by non-disabled people who mentioned disability, including Hillary Clinton's Acceptance Speech. That's well worth listening to as well, particularly for the ways she talks about disabled people and disability issues. Here's a beautiful reflection on this by Ingrid Tischer, #CripTheVote: You Have Hillary Clinton to Blame for This Blog Post.

Quitting The Podcast ... For Now

I am putting an end to the Disability.TV Podcast in its current form, but something will take its place, and what’s already been done won’t go away.

I still believe there is a huge and mostly untapped potential for audio podcasts in Disability Culture. There are just enough really good disability podcasts out there to make me certain there could and should be more. However, in the three years since I started Disability.TV, I have concluded that I'm not very good at it, especially when I go solo, and right now I don't have the time and resources to line up sufficient guests. So I'm going to stop this cycle of excitement about a new disability on TV topic, procrastination about actually doing a show about it, and relief at finally doing it, followed by slight disappointment over the results. I gave it a decent shot. I like a lot of what I and my guests dis. But it's time to move on to something different.

What next then?

For awhile, nothing. I've got enough going on with the blog, the freelance work I'm doing this summer, and my daily #CripTheVote activities. Eventually though, I have in mind a more general-interest disability video show or "vlog" on YouTube. I say "general-interest," but I probably mean topics clustered around disability activism, politics, and culture ... much like the written Disability Thinking blog. It will probably once again be a combination of short solo entries and somewhat longer conversations with others. I might even do a few on-location vlogs when there's something interesting to look at.

In the meantime, I will keep the podcast alive so you can listen to it anytime you want. Occasionally, I'll even promote some of the through the Disability Thinking blog, Twitter, and Facebook. And whatever comes next will take its place exactly where the podcast resides on the Disability Thinking website. So stay tuned. If there are particular things you'd like to hear and see, format preferences, or other ideas, please do let me know!

By the way, don't forget that the Disability Thinking Links page includes links to my favorite disability-related podcasts and vlogs. Go visit, and check back now and then, to see what great stuff other people are doing in disability media and commentary.

Beach Break

This seems like the wrong couple of days to continue writing about threats to disabled people. Not that racially-connected police killings and killing of police make threats to disabled people less important. Just that I feel like it’s a better idea to allow a couple more days before digging again into darker side of ableism when the darker side of racism deserves undivided attention. I’ll pick up the topic again tomorrow.

In the meantime, a Facebook friend of mine has alerted me to an interesting accessibility story I’ll share instead.

A beach in North Carolina is installing “accessibility mats” that make it easier for wheelchairs and people with impaired mobility to navigate sand. It seems like a natural idea to me, and a notch better than those beech wheelchairs, which can only help one person at a time. It puts responsibility onto the facilities rather than on the users, which is of course a bedrock principle of accessibility.

The linked news story includes a video, but it’s not very good, and I’ve found a much better video about the same thing that actually shows how the mats work. I’m embedding it below:

What, Exactly, Is #CripTheVote?

I’m working on a thing today, so here is a terrific video presentation by Alice Wong about #CripTheVote. She explains what #CripTheVote is, our goals for starting it, and how it works. You also catch a look at my mug and Gregg Beratan’s

I forget sometimes that at lot of people think Twitter is either silly or nasty, and that others take a dim view of online “slacktivism” in general. I understand why, I guess, but it seems to me that Twitter and other social media are perfect for activism that mainly is about fostering a conversation. It also encourages political participation among people who may not have the ability or resources to do physically taxing, in-person activism.

I’m prejudices of course, but #CripTheVote has been fun so far, and the election conversations have been a lot more civil and substantive than what’s been happening elsewhere. If you haven’t already … even if you think you’re not “into politics” … check #CripTheVote out.