came together on the WBAI show The Largest Minority to discuss Glee and depictions of disability in popular culture. This particular episode of the radio show was inspired by s.e.’s post, A Very Glee Christmas.
You can download directly from their site: This is a direct download link to save-as. Alternately, you can play it on the WBAI site by going to their archives and scrolling down to Shared Timeslot Wednesday 10pm to 11pm on Wednesday, December 22, 2010 10:00 pm. Alternately, you can read the transcript.
The actual show itself doesn’t start until 3:52 in to the program slot.
It’s taken me a while to get the transcript of this done, for which I apologize. I did mean to get this up far faster than I did. I also should note that I had some difficulties always identifying who was speaking, and there are points in the program where the show’s audio cuts out terribly and I’m unsure what they’re saying.
Starts at around 3:52 on the download
Announcer: Good evening, Babylon. Welcome to the Largest Minority, WBAI’s program focusing on the news and views of people living with disabilities. Our aim is to increase communication within our community, and to facilitate understanding with society above labels and beyond classifications. Largest Minority airs right after [?] computer show at 9pm on the Second and Fourth Wednesdays of each month, alternating with the Joy of Resistance, Multicultural Feminist Radio. And we like to think of it since this is the season as WBAI’s Island of Misfit Toys. And today, stranded with me on the island is Attorney TK Small in studio and we have, rockin’ the board tonight, our friend Sydney Smith.
For tonight’s show we are going to have a round table discussion with Lawrence Carter Long and a number of different activists and actors and media personailities, talking about the popular television show Glee. Which… and it’s somewhat controversial and also in some ways typical misrepresentation of the disability experience and people with disbailities as well as other minoiryt demographics.
TK Small (TK): I should throw in… this is TK Small by the way. I should throw in that the inspiriation, or the idea behind this segment about Glee related to a very powerful blog that I read that talked about the Christmas Episode where there was reference to Tiny Tim, curing disability and all that, and that’s how the segment around Glee came about.
Announcer: And, we just want to… the discussion, as you’ll hear, will unfold, but there are a number of different ways, I mean personally, I like to think of it as one of the reasons people with disabilities don’t get invited to your fun type of parties is because we may have some sort of a reputation of being a bit of a downer and taking the joy out of things and so we want to dedicate tonight’s show before Christmas to doing exactly that with everybody’s favourite t.v. show, Glee. In fact, TK and I were going to try and ruin everybody’s Christmas by doing an a capella version of, I don’t know if it was going to be Holly Jolly Christmas or Rockin’ Around the Christmas Tree but we decided to show you all a little bit of mercy. But before we go into that, we wanted… I wanted to point out another friend of ours, who’s actually part of one of the successful clips of our previous show’s discussion of the life of Laura Hershey on her Facebook Page she made a comment about the use of term “lame duck” to discuss the outgoing 111th congree and wndering whether that was somehow denigrating–
TK: Congress or people with disabilities? [laugh]
Announcer: Right, exactly, that’s just the thing, but I wanted to point out for those of you who maybe want to think a little bit differently about the concept of “lame duck” or “disabled waterfowl” in general – differently abled waterfowl in general – that the news is full of the fact that this is a unprecedented successful and effective congress and among other things we should..I think it is most appropriate that one of the most popular songs is “Donning our Gay Apparel” because your Gay Apparel may include a combat helmet, and you can go into battle for the United States army, navy, marines, as well as the coast guard.
TK: I wonder if I would have to tell them that I’m disabled.
Announcer: Yes. I don’t think you do, I think you could just sneak right in.
TK: They don’t have the same rules of people with disabilities?
TK: I can hide my wheelchair while I go into the TIme’s Square recruiting station.
Announcer: We don’t generally– We do not ask, and we rarely tell on this show when someone has a disability. That’s one of the calls we get –
TK: That is an illegal question when you go for a job interview. Your employer is not supposed to ask any questions.
Announcer: Hmm. That’s interesting.
TK: Although as an attorney I used to get that all the time when I was applying for jobs. You’d think that the legal firm would know not to ask that question but apparently not.
Announcer: [laugh] Well, in any event, we wanted to make a point of that… that sometimes the disabled waterfowl can be quite effective and just to note the historic passage of the repeal of Don’t Ask, Don’t Tell. In any event, it is now 9:08, about to be 9:09, and now its time for the news headlines.
[I have not transcribed the news headlines.]
Announcer: And we’re back listening to the Largest Minority on WBAI. And, on tonight’s show, as promised before, we’re going to have a round table discussion about the popular television show Glee, which features, among other people, a character portrayed by an able-bodied actor who is in a wheelchair. In the most recent show which re-aired again last night, he has a Christmas wish granted by gaining one of these new apparatuses which enables him to stand up and walk, and it’s portrayed as kind of a Christmas miracle and it’s extraordinarily patronizing and a lot of people with disabilities found it extremely irritating, including people on our panel.
TK: And if anybody walks up to me on the street and says I should get an exoskeleton and make me walk, I’ll kill them.
Announcer: Well, you’ll have to get a killer exoskeleton first and you know what? Someday they’re going to make it. [TK laughs] And so without further ado, our own Lawrence Carter Long is leading this discussion, and here it is.
[Music - theme song. I'm afraid my hearing problems have come back and I can't hear it clear enough to transcribe it which is unfortunate because I think it sounds awesome, but I don't want to get the words all wrong.]
Lawrence Carter Long (LCL): And you’re listening to the largest minority on 99.5 WBAI and on the internet at WBAI.org. I’m Lawrence Carter Long and we’re here talking today about everbody’s show that they love to hate within the disability community, Glee. With TK Small.
TK: Lawrence, it’s good to have you back.
LCL: It’s good to be back. You know, nobody thought when the pilot episode of Glee premiered back in May of 2009 that the series would become the phenomena it is now. Glee features on-screen performace based numbers which are selected by Ryan Murphy, who gained previous success with the show Nip/Tuck, and aims to maintain balance on the show between show tunes and charted hits. The music with Glee has been a commerical success with over 13 million digital singles sales and 5 million album sales. The series merchandise also includes DVD and BlueRay releases, a Young Adult book series, an iPad appilication, and a Kareoke game for the Wii. During it’s first season Glee received generally favourable reactions from the critics with Metacritics weighted average based on the average rating of 18 critical reviews at 77%. The season was nominated for 19 Emmy awards, 4 Golden Globe awards, 6 Satellite awards and 57 other awards that we won’t get into, with wins in the 2010 Golden Globe award for best t.v. show, musical or comedy, and Emmy awards for Lynch, guest start Neil Patrick Harris, and Murphy’s direction fo the pilot episode. The second season has been nominated for 5 golden globes, including best tv series in comedy as well as a number of nominations for cast members.
But the feel good show is not without its critics, particularly from the disability community. While media reports in such high profile outlets as People Magazine and US Magazine and trade publications like Hollywood Reporter and Variety have centered on the casting of Kevin McHale as paraplegic wheelchair-using Artie, deeper criticisms regarding plot, tone and representation have received minimal coverage in comparison.
With us today on the Largest Minority we have s.e. smith, who is a feminist and a disability rights activists based in Northern California, who rights for the This Ain’t Livin’ blog, and FWD in the Jewish Daily.
s.e. smith (SE): I am, and I should quickly correct you. I do not write for the Jewish Daily FWD, I write for a feminist website also called FWD.
LCL: Feminist website FWD! Thank you for correcting me.
SE: It’s a very common confusion.
LCL: And also with us is Alice Sheppard who is a Dancer with AXIS Dance company based in Northern California. She’s also a disability advocate. Welcome Alice.
Alice Shepard (AS): Hey Lawrence, it’s good to be here.
LCL: We also have Christine Bruno who’s a Disability Advocate, a actor and director, and works for the Alliance for Inclusion in the Arts. Welcome Christine.
Christine Bruno (CB): Hello.
LCL: And fresh from the Keith Olbermann show, the co-creator of Arabs Gone Wild [OPENS WITH SOUND], going on tour again, January 20th, starting in NYC to 8 different cities, Maysoon Zayidd. Hello Maysoon.
Maysoon Zayid (MZ): Hello, Lawrence and TK.
LCL: So. Glee! Let’s talk a little bit about the casting side. Everbody wants to talk about the casting first. What’s the problem with casting a non-disabled guy to play a wheelchair user. Come on, it’s acting! Isn’t that what acting’s about?
CB: How long do we have?
SE: Well, I think you have a situation where you have someone who does not have the lived experience of having a spinal cord injury playing it and it’s very obvious to anyone who has such an injurty or knows people who do that he’s playing it very badly.
LCL: So we’ve got some wheelchair users, and we’ve got some disability advocates. What do you mean by “playing it badly”? How do you play disability badly? I mean, all you gotta do is sit in a chair, right?
AS: If it were only that easy. There’s an understanding of embodiment that’s just not physical in McHale’s portrayal of Artie, and for me, what I see is a huge gap between the body and the chair. He doesn’t even understand how to push that thing. There’s a kind of sweet roll that those of us who use manual wheelchairs can find and use and McHale is always shown shoving and pushing. There’s no rhythm, there’s no feel, there’s no understanding of the chair as part of his body.
LCL: Alice, you know of which you speak because you use a chair and you’re a dancer.
AS: I do.
LCL: You tour professionally, you’re a working dancer. In terms of their choreography none of it really shows the kind of work that you’ve done.
AS: That’s right. The choreography shows Artie just sort of waving his arms, bending a body, behding a head. There’s no integration. And the sad thing about it is that McHale is a beautiful dancer, he’s a really gorgeous mover and, you know, he just can’t make it work in the chair.
LCL: Maysoon, you wanted to add something?
MZ: I just I feel like there’s a couple of different problems with the casting of Artie. One is that, as an actor in the disabled community trying to do my own script, which I wrote, I can’t even get directors to screen test me in my own role as a character with cerebral palsy. As I go from producer to producer, director to director, they do not want to give disabled actors a chance to play disabled parts. Not to mention non-disabled roles. So my first problem with Artie is that I simply do not believe that Ryan Murphy exhausted all options in finding a singer who could sing and dance miraculously and gorgeously, that he couldn’t heal. And I think they intentionally chose an able-bodied actor so they could get him out of the chair to sing and dance whenever they wanted. There’s a problem in Hollywood, there’s a problem in television, that is disabled actors are not given a chance to play neutral roles, and we’re also not given a chance to play our own roles, and we think that only someone mimicing it can win an Oscar. I have Cerebral Palsy. I think Daniel Day Lewis’ portrayal in My Left Foot was absolutely disgusting. So what we see and what the other people see are not the same thing. And when Kevin McHale commented “why can he play gay”, it’s not the same thing. Anyone can play gay, but I can’t play Oprah because I’m white. And he should not be–
LCL: So there’s a certain physicality that comes from playing a disabled character that more often than not people get wrong. Now, Christine, why don’t you talk about this. The Alliance for Inclusion in the Arts. What the Alliance does is help casting directrs, teleivison shows, movie production companies, cast disabled actors. And you work as a sort of go-between between the industry and the working professionals. What is it that you see within the Alliance that shows this problem or illustrates this problem.
CB: Well, basically, I was just gonna say exactly what Maysoon said, we have to start there. There are disabled actors who can play that role, first of all, first and foremost. Alice is absolutely right. The portrayal is faulty at best. I’m trying to be diplomatic. We are on radio.
LCL: You don’t have to be diplomatic with us.
CB: So, Alice is right, but before we even go to the portrayal of a non-disabled actor playing that role let’s go where Maysoon just did and there are actors who can play those roles. In my role as a disability advocate we see this every day all day. We get calls for actors, disabled actors, specifically to play disabled roles. We next to never get calls for disabled actors to play non-disabled characters. Sometimes it happens if a disabled actor goes in a “wows” a producer just in general and they say “We have a part we think you would be great for” and it doesn’t matter that they have a disability but that’s very few and far between.
LCL: Let’s talk about… play devil’s advocate for a bit because some criticisms I’ve seen around Glee have been met with basically the statement “They have a character named Becky who has Down Syndrome, who’s part of the cheer-leading squad. So what about Becky?” And in addition to Becky, in May 2010, Zack Weinstein guest-starred on Laryngitis where he basically was there helping Rachel, who had lost her voice. He was there to serve as the inspiration for Rachel and to help her accept her lot in life. So they have hired disabled actors. What’s wrong with that?
SE: And totally … And totally troped stereotypical roles that pretty much evoke every hateful stereotype about people with disabilities imaginable. I mean, the episode with Zach Weinstein we see him lying in a hopsital bed wearing his football jersey longing for everything he’s lost. He’s just there literally as a prop in an inspirational narrative to make non-disabled viewers feel better about how they think about disability.
CB: And I also think, you know, just to jump ahead for a second. First of all let me address really quickly about the point you’ve made about they’ve hired disabled– They have hired some disabled actors. I mean, at the rirsk of again not being diplomatic it’s true that there’s really two disabilities that can’t be portrayed by other than the people who live those disbailities. One is a little person, and the other is usually a person with Down Syndrome, and there are very distinct physical reasons for that. I mean, can they absolutely not be portrayed, I don’t know. Maybe they could in Avatar Land.
LCL: But again you’re taking jobs away from disabled actors.
CB: That’s right. That’s right. But the other thing is the issue that I wanted to address. I’m sorry, your name is s.e. on the phone, is that right?
CB: I think that Glee, unfortunately, casting aside, has missed so many opportunities to, for lack of a better word “right the wrong” of casting a non-disabled actor as a disabled character. They could have done so many things with story-lines that they have chosen, knowingly now, not to do. Because they have been put on notice from the disability community, from the Disabled Arts community, from the unions, that while the casting is said and done and there’s nothing we can do about that we’d like to see the ortrayl and the representation of disabled people and the lived experience of disability be more accurate and authentic.
AS: Can I just speak for a second to the audition for the Cheerios that the character Becky gets? This strikes me as possibly being emblematic. There’s a way in which Becky… we don’t actually find out if Becky can or cannot do what the Cheerios require. She’s given the part, or at leat a place on the team because it looks like Lynch takes care of her or feels sympathy for her or uses the fact that she cannot appear to do that, or is made to seem that she can’t do that, so it’s a sort of pity gag in the audition on the show, and it makes me wonder, what did that mean in the actual audition and casting process?
LCL: And I’ve seen people with Down Syndrome who are on cheerleading squads. Anyone can do a search on YouTube and you can find that sort of thing. One of the things that I think that some peole have brought up in criticizing the disability community is “Well, she refuses to coddle her”, right? She sort of has her there and she kind of, you know, doesn’t treat her differently, but the down side of that is she’s not doing the basic things that most of the squad is doing. It creates this dilemma on how to portray disability in a way that emphasies both honesty and accuracy over sentimentality and false messages, and I think that’s what you’re getting with the Becky character.
MZ: Can I also just interject before I leave, because I have to run, unfortunately, even though that’s difficult for me to physically do. I also feel like growing up in the states watching movies as a child was really traumatic for me, because I was always watching characters who were either healed or pathetic, and Glee is continuing that saga of either the character has to be pathetic with the one goal in life, finding anyone so charitable as to love them, because no one can love someone who’s disabled unless they also heal them. Or, watching people who couldn’t walk on screen suddenly in heels strolling down the red carpet. Glee is definitely trying to bill itself as a show for the youth and it’s yet another place where people look and go “Oh, I guess I can’t become an actor. I guess I can’t do anything. Maybe if I was just Downs they’d give me a chance.”
LCL: So the sense here–
MZ: I’m a comedian by the way, sorry.
LCL: So when we talk about the Artie character, on Dream On. Let’s talk a bit about specific episodes. We’ve got the major plot line in Dream On, where Artie begins doing research on new treatment and he starts to get hopeful that one day yes, he’ll be able to be able to be quote unquote “a real dancer”, that he’ll get out of the chair and dnace around. This suggests a theme of empowerment, that people with obstacles should not be deterred from their ambitions, yadda yadda, but the guidance counsellor tells Artie that his hopes of walking again are unrealistic and he should plan on talking to her on a regular basis and it sort of focuses. So the message that it seems to me that this sends to disabled viewers is not that there are real disabled dancers, using chairs aside, but because of one’s disabilities, your dreams are impossible.
TK: And Lawrence, it might be helpful for our listeners to explain that Alice, sitting righ tnext to you, is practically having a conipution fit as you describe this.
LCL: I thought that was part of her condition [laughter]
SE: I’m not in the studio but if I was you would see me having a small conipution fit myself. I thought the message of that episode was people who use chairs A) never get out of chairs, part time wheelchair users are never acknowledged as existing ever, and b) can never hope to do anything. That’s, like, a huge slap in the face to the disabled dance community to be told that wheelchair users can’t dance in that episode. I mean…
AS: Truly, absolutely. And the thing that really really catches me is one move, the one thing that really could… Aaron Fotheringham is the disabled stunt artist and he pulls that awesome one rear-wheel wheely. I mean, the irony of hiring a disabled stunt artist to actually execute the role of a non-disabled actor. It bites. It just… bites.
LCL: So adding insult to injury.
AS: It did.
LCL: By hiring somebody who can actually pull the move off play the stunt double when it came time to film the episode.
SE: And if you saw any of the press for Wheels, the producers were acting like they had invented this super cool new thing called “Wheelchair Dancing”.
CB: Yes they were.
LCL: There’s no acknowledgement of things like AXIS or Dancing Wheels or CanDoCo or any of the companies who have been out there an in existence for decades.
CB: I mean, they didn’t even look. Not only did they not have a wheelchair dance consultant on the set. Those articles came out, I remember there was one in the Daily News that was sort of framed in this “ha ha, isn’t this sort of funny that we all thought this was going to be easy and simple and then when we tried to wheel up on the ramps in the set we fell over and hit our heads.” [Here's an example in the NY Post]
LCL: You’re talking about the other cast members in the show.
CB: Yes, the other cast members in the show. In an effort to, and I’m using little quote marks with my fingers in the studio, in an effort to “identify” with Artie’s “plight” as it were, they thought they would stick themselves in wheelchairs and try to dance. But, you know, I want to bring up something that I have heard in my role as disability advocate in the Alliance, the pushback, from the producers, and the creative team on Glee is that, “Okay. So now here we are, we’ve created this diverse group of Gleeclub members, one of whom includes is a character with a disability. You complain complain complain that you don’t see any characters with disabilities on t.v. here now, we’ve given you one, and you’re still complaining.” And let me point out that they’ve won a diversity waward for Glee. So–
LCL: Who gave them that diversity award? Come on, let’s call ‘em out. They gave them award.
CB: I’m not going there.
LCL: They get the criticism.
SE: I’m hitting the internet, I gotta tell ya. The other thing, speaking of the so-called diversity of the show, (while looking this up very quickly) if you look at the other cast members you have [?] Mercedes– [this gets really disjointed in the recording. se mentions the fat activist community] what is going on with Lauren Zizes, you have stutters who are furious about the decision to fake Tina’s stutter, and the gay community is not that stoked on Kurt’s storyline either.
LCL: So this is not restricted to the disability community in general.
CB: Except I have heard good things about the portrayal of the gay narrative. I’ve heard good things about it, only because that’s the one that’s the most well-rounded at the moment.
SE: It’s the most well-played and I think it’s because Ryan Murphy and Chris Colfer have that experience. The award came from the Multi-Cultural Motion Picture Association. I also note it’s been recognized by a Television with a Conscious award, which– some of us disagree on, and that would be from the Academy of Television Arts & Sciences.
LCL: So, I think, it points out one of the problems that we get into in doing criticism or having honest criticism of a show like Glee is when people push back, they’ll say, “Hey, wait a minute!” and try and ignore these criticisms that are more in depth about these questionable areas of depiciton and try and reduce the conversation to “you’re just mad they didn’t used disabled actors” instead of really engaging in what advocates are saying and what the people doing those critiques are saying.
SE: Well, it gets back to “any representation is good representation!” complaint, and I think most members of minority groups say “No, the tropes and stereotypical representation is harmful.” And most of the messages that Glee sends about disabilities are actively damaging to the disability community, whether there are disabled or non-disabled actors.
CB: Yes, and that’s sort of the point I was making. Yes, from our point of view, and from the disabled actor point of view, and the disabled person’s point of view, they made a mistake by casting Kevin McHale. From our point of view, but they cold be taking active steps to use these as teaching moments, and really portraying the lived experience as it exists, even with Kevin McHale in the role, if they hired consultants, if they had scripts that were… the accurate portrayal of what we live with everyday. I could live with that a little more than this continuing of the myths and assumptions and perceptions of people with disabilities, and how we live.
LCL: And let’s talk about the common threads within those misconceptions. One of the common misconceptions that get played out over and over and over again on Glee is that Artie seems to be focused on walking agian. He’s only going to be happy if he walks again, and they has been shown now on a third episode, even so far as having a dream sequence where he does get out of the wheelchair and is dancing around with himself [YouTube link to live performance by McHale]. I mean, those things we see over and over again, and again on the Christmas episode which sparked this converastion. He gets the ability to use this machine that costs million of dollars and is not going to be available to anybody, this exoskelton which affords him the ability to wlak again, which he does. [?]
[?] The whole Christopher Reeve thing.
AS: [These whole section is completely incomprehensible to me. What I caught out of it was about Tina and Artie breaking up, something to do with Mike Chang, and then his girlfriend giving him the ability to walk] a kind of emasculation in the protrayal of disability there.
SE: [Something else incomprehensible] The implication is that everybody’s mocking Brittney for being stupid for believing in Santa Claus and her perceived stupidity is a kind of a running joke in the series which definitely makes me uncomfortable in the “dumb blonde stereotype”, that only Brittney would be stupid enough to think that Santa could give him the ability to walk again.
LCL: And it’s played again as comedy. So, as the show that positions itself, and the producers have certainly done this time and time again when the critisims have been brought out, as a quote unquote “progressive show” with a message, and we’ve talked about how that’s not really the case with any of the characters, and I like to get into that a little bit. Why is it perceived as a progressive show? If it’s a show that depicts minorities through a majority lens – I mean, we’ve got non-disabled actors and writers handling a disabled characters, we’ve got white folks writing for Black and Asian folks. Maybe the exception to this rule is Kurt, Ryan Murphy’s alter-ego, why do you think that most people, despite these criticisms, have continued to laud it or applaud it as a progressive show?
SE: Because it’s the majority that gets to decide whether or not it’s progressive. If you compare reviews of Wheels, which got a lot of press, you see a lot of non-disabled people praising the show for sensitive, honest depiction of disability that shows you what it’s like, and you saw a huge swath of the disability community going “Um… no”.
SE: So, I feel like the dominant majority is– those are the people writing the pressers and giving out the awards and getting to decide what is progressive or not, and it’s notable that a show written and performed through a majority lens, so it’s nice and safe and comfortable for progressives, is [unclear].
LCL: So i’s a safe kind of portrayal, it’s a cookie-cutter form of progressive, it’s something that allows the viewers and the writers and producers feel better about themselves.
CB: That’s right.
TK: As a disbaility rights activists that does not come from the right side of this issue, that’s what I find so insidious about this type of program, because where the vast majority of able-bodied people get their understanding of disability is through this stupid show.
CB That’s right.
LCL: If it’s reinforcing or reiterating the kind of non-sense people already believe, we’re not going to get beyond that.
TK: Which further leads to “it’s better to be dead than to be disabled“, and forces people to make horrific terrible decisions, like going to somebody like Kevorkian for physician-assisted suicide, because the idea of being disabled is just too scary.
AS: And we’re right back at Million Dollar Baby.
CB: That’s what saddens me and perpelexes me so much about this particular show. I thnk TK is right. It’s really insidious because of its position right now in the American vocabulary and how popular it is. It has so much opportunity to do so much good for so many under-represented groups. And you know what? Audiences are smart. They’ll swallow what you give them if its believable. I blame the producers for taking cheap shots and being lazy. Lazy lazy lazy.
LCL: I think most producers probably are lazy. You don’t see a lot of new things coming out of network t.v.; that’s my own critique. Maybe sometimes on cable. There’s Breaking Bad.
SE: Or Friday Night Lights, yes.
LCL: In terms of their portrayal of disability. I would wonder, why do you think that those push backs on, you know, the disability centered critiques have been done on Glee. s.e., I know when we were communicating about the show and doing this program, you said that you received rape threats, death threats, and all sorts of things for critiquing the show and actually writing about it on the blog, people calling you r#tard and all sorts of things. What do you think, and what do others here think, is so scary about people with disabilities challenging the depictions of us in pop culture and mass media?
SE: We’re making the narrative messy. I have had a piece on Glee go up at the Guardian over the summer, and that’s where probably the majority of the rape threats came from; they’re very friendly over there in the comments I must say. What I found is that people have a very simplistic, sacchrine view of disability that Glee reinforces for them, and things get really complicated when you start talking about things like, say, wheelchair users who dance and actually don’t spend every waking moment wishing they could walk again. It deconstructs the narrative to find out that we’re individuals who experience our disability differently. Some of us may hate them, some of us may love them, and people don’t like having their views of minorities complicated that way.
LCL: That;s more nuanced, that takes a lot more work as an audience. You can’t just sit by and passively watch the show, you might actually have to think about it.
SE: You have to engage with it.
LCL: I just wanted to, before we go a little bit further, I just need to say you’re listening to a very special edition of the Largest Minority radio show, on WBAI. I did say that with a wink and a nod just so everybody knows.
AS: Thank you, Lawrence, I’ve always wanted to be special.
CB: I am special.
SE: Where’s Tiny Tim, that’s what I want to know.
LCL: That’s actually not very far, let’s talk about the Christmas episode. It’s actually not very far from Tiny Tim, is it?
SE: No it is not.
AS: Not being fully aware of all of the American traditions, can somebody just remind me of that movie, is it Miracle on 34th Street–
CB: Which, Tiny Tim?
AS: No, the t.v. movie that plays every year around the holiday season about miracles and the Christmas season.
CB: You mean all of them?
AS: Yes, all of them, oh, It’s a Wonderful Life, that one!
SE: There’s a lot of telvision about that.
AS: And so the thing that really gets me about the Very Special Christmas Episode is this is directly in that tradition. It’s a direct continuation of Christian narrative about sin, illness, miracles, disabilities, healing and cure. It’s that holiday time, we’re right there. I can’t believe they went there, and they did.
LCL: So, right with your eggnog and your fruit cake, you get a cure narrative.
AS: You don’t get a cure narrative, you get… it’s very interesting to me that they don’t heal him, they don’t cure him, they just make him walk. It’s flying a very careful edge, I want to be careful and say it’s not a cure narrative, it’s miraculous.
CB: It’s a miracle.
LCL: So we get the Christmas miracle.
AS: But we don’t get the cure.
SE: And note that the preson who is rewarded in this narrative is the believer, which is a very old Judeo-Christian concept. Everbody mocks the person who believes and in the end she is redeemed for her faith.
LCL: So let me ask you this. We’ve gone around and I want to make sure that everyone, if they have burning questions or burning comments about the show, but I would ask, first, as a contrast, what are some of the things that you’ve either seen, or would like to see, regarding depictions of disablity that we haven’t quite seen yet. What are the options, what are the alternatives, to the kind of things that we’re seeing on Glee that we’re pushing back against and we’d like to see alternatives to?
CB: Lawrence, I just want to say one thing about, it speaks to that, but I’m not giving an example. In July, I participated in a day-long conference with the unions, with AFTRA and SAG, called Lights Camera Access.
LCL: Tell people what AFTRA is.
CB: Oh, it’s the American Federation of Television and Radio Artists. I participated in a day long conference with AFRTA and SAG.
LCL: And this was in Hollywood.
CB: This was in Hollywood at the Academy of Television Arts & Sciences.
LCL: The folks who do the Oscars.
CB: Yes, the Emmys, I think. And Glee, the producers of Glee, Ryan Murphy et al, were invited to the table as one of the panels was “best practices”, so we had representatives there from Breaking Bad, and –
LCL: Breaking Bad showed up, Brothers showed up.
CB: I mean, it was amazing, and basically they were talking about their experience in making television with disabled characters and disabled story lines–
LCL: And you even had people from Family Guy.
CB: Yeah, Family Guy showed up.
LCL: So if the cartoon cahracters can join–
CB: Yeah, we did.
SE: And Seth McFarlane is not known for progressiveness.
LCL: Right, but he was willing to have the conversation which says something about him in relation to the producers of Glee.
CB: Right, yes, and it was a very conscious decision on the organizer’s part to ask Ryan Murphy and the other producers of Glee to come to the table. And they chose not to. I don’t know if there was any response or if they just ignored the request but that to me is very telling. That to me tells me that there is something they’re not doing that they know they should be doing that other people are doing successfully. There is no denying that Breaking Bad is incredibly successful and the way that they’ve handled the storyline with RJ Mitte is amazing because it’s understated and it just is part of the fabric of the show.
LCL: Right, so rather that have a converastion with people who know something about the topic, and can have a focused discussin about the issue and take it a step further it seems they might be more inclined sticking with people who don’t know anything about these issues and enforcing the narrative–
CB: That’s right. And we’re tired of preaching to the converted. I mean, we’re all sitting here, all of us here are sitting in the room talking about these things that we talk to each other about all day every day. It would have been nice to have someone like Ryan Murphy sharing practices that those people, like the Breaking Bad people, sharing their best practices with those who could learn something. But, it didn’t happen.
TK: We need to know where he goes to get coffee and just dog him with scripts and ideas and real gimps doing real things.
LCL: Hey, we can sing, we can dance.
SE: I would note too that Glee has actively thumbed its nose at critics. The embedded meta commentary that you see in various episodes, and especially from Mercedes, tends to be kind of the voice of that, but I mean they’ve basically out and out insulted the disability community with some of the lines in the episodes that are basically, I think there’s one eisode where Mercedes basically says “Oh, tee hee, I’m not suposed to do that, am I, because it’s not PC.”
LCL: Oh, right, she was talking about her, and something, she was talking about Artie and she used Handi-Capable or something like that.
CB? AS?: Ha.
SE: So Glee is obviously hearing us, they just don’t care.
LCL: They’ll do the meta-narrative inside the show, critiquing us, but without us actually being at the table. That whole handicapable is bizarre to me because it sounds like a kitchen utensil. It slices, it dices, it makes fries, but it doesn’t really describe us, the real humans tied in to the issues we’re talking about. So, what would you like to see? What is something that you’ve seen? it is the Christmas season, what would you like to see, on a high note, or what have you seen, and what would you like to see more of? Is there enough out there?
SE: More depictions of disability where it’s not the central focus of the character. I mean, I think you have.. oddly enough, and if everbody here watches Private Practice because I think Doctor Fife is a great example of a character who happens to be disabled.
CB: Yes he is.
LCL: There was another character who was back on ER who did a similar thing, back when ER was on.
LCL: The woman who was post-polio.
CB: Oh yeah, Dawn. That was short-lived. There’s another one and it just went out of my head.
SE: Bonnie on Jerico, played by Shoshannah Stern, is another great character, she actually– she auditioned for a non-disabled role and they liked her so much that they brought her on and made the character deaf, which I thought was so awesome.
LCL: CSI with Robert Davis Boel’s character, who is always there. I know shows like Weeds had Linda Bovine as the social worker, and Shosanna in the first season. Basically it’s not described or gone into details about her disability at all, just showing them.
AS: Or even the Private Practice guy.
CB: Yeah, she just said– Oh, she can’t hear. Alice doesn’t have headphones so she didn’t hear what you just said.
LCL: We said Family Guy earlier, what about South Park? Can you do edgy and do disability?
TK: Edgy is good.
LCL: Edgy is good, we can do edgy.
SE: Edgy is good, especially when it’s coming from disabled people who are owning their own experiences.
LCL: I think we saw that even in Family Guy when we had the character with Down Syndrome who was portrayed by a young woman who actually has Down Syndrome. There have bene these steps taken throughout the industry but we haven’t seen shows with the profile or notoriety of Glee taking something on board.
SE: I think something else I would lik to see, Glee’s handling of mental illness is absolutely deplorable. For the most part pop culture depictions of mental illness makes me actually want to throw things at the television.
SE: It is so very rarely done at all well, and pretty much every stereotype you can possibly imagine about people with mental ilness being dangerous and scary and sexually promiscuousness and every thing just get thrrown at us,and very rarely do I see out, proud, capable mentally ill characters.
CB: I will say one thing abot the United States of Tara, which is on Showtime, oh I don’t know if anybody has seen this show, but it is about a woman who has DID and they are very proactive. They are proactive in their marketing of really protraying mental illness in an authentic way. They have on their website a lot of information about DID and where people can go to find infomraiton and they have a consultant on the show as a regular employee, all of the time, so I think if you’re going to talk about mental illness you really have to do right, and I think the’re a show doing their due diligence.
SE: I think Six Feet Under, when it was airing, had some really rocky patches wit mental illness, but at other times the depictions were very honest and real, especially, I’m re-watching it right now. In the third season there’s a storyline with Vanessa having depression that I think was done really really well.
LCL: We’ve gotta wrap it up now. Are there any final thoughts you want people going away with, either thinking feeling or doing regarding Glee and Disability on t.v.?
CB: Don’t watch.
LCL: SE, why don’t we start with you first.
SE: Oh gosh. You know, honestly, the outcome I would like from Glee… I would like to talk to Ryan Murphy personally about what he’s doing, and I’d really like him to come to the table with members of the disability community to have serious conversation with representatives of the disabled actors, disabled dancers, to talk about how damaging Glee is and how to fix it. I mean, the show is still airing. It got a renewal for another season. There is time to turn this bus of sadness around.
LCL: That’s your Christmas wish, we’ll sit down with SE and Ryan Murphy. We’ll have TK moderate. Alice?
AS: I want them in the audience for one AXIS show, and then I want their minds completey opened. Short of that, we have to keep watching as a community, we have to keep talking and writing and calling and sharing and pressing because that’s the way change happens.
LCL: So, it’s a popular show, don’t give up on it.
AS: Keep up the fight.
CB: I’d like to see them really meet with some disabled actors and really entertain the thought of casting disabled actors and just listening to the lived experience of what it’s like to be an actor with disability, with other people in the room so at least if they’re not going to cast disabled actors, whatever, they’re doing what they do right.
LCL: So we can do something with a disabled characters so they’re not just stuck in a box the entire episode.
CB: That’s right, change the narrative, please.
LCL: Alright. This is Lawrence Carter Long, TK Small.
TK: I’m really impressed with the conversation we’ve had here. What I’ve taken away from this is there’s important work being done. It may not be possible to fix Glee, but I do believe through advocacy and script writing, and the ideas of performers with disabilities taking on ownership of the craft and the art, and the presentation itself, that positive things will come out of it.
LCL: Thank you, and I think that’s what we’re all hoping to achieve here.
©2014 FWD/Forward. All Rights Reserved..]]>
I’m really bothered by this. I know, I know, it’s advertising. We also don’t get excited about brighter brights in our laundry and aren’t followed around by wind machines when we get new shampoo. It’s certainly not supposed to represent “real life” in any way, because it’s all fantasy to sell you stuff. But part of what advertising sells us is ideas about people. And part of what I think it sells us is that disability is a punishment, a novelty, a metaphor, or a joke.
As we’ve said before, disability never just is.
I think this does immeasurable damage to both our perceptions of ourselves as disabled people, but also people’s perceptions of disability and what it looks like.
Today I’ve pulled up a bunch of US-based advertisements (oh, wait, I added the Quebec advertisement after writing this paragraph – Canada & the US!) that feature people with disabilities. I’m curious about what people’s thoughts are when they watch these. What take-away messages about disability do you get?
Mothers Against Drunk Driving (MADD): Disability as punishment.
The video is a bit grainy, probably meant to invoke “home movie”. It opens with tinkly piano music of sadness and woe. A male singer croons: Together…..
The video opens showing a young man sitting on a bench, reading a book. He’s labelled “Your Best Friend”.
The Singer croons: We’re meant to be….
The young man looks up! There’s a woman! She’s walking up to him, obviously excited to see him. She’s labelled “Your girlfriend.”
The camera pans back to show this scene as viewed through a hospital window. The couple – your best friend and your girlfriend – walk off together hand in hand.
The singer croons: Together! Forever!
The camera continues to pan back to show the back of someone sitting in an electric wheelchair, staring out the window. The hospital room is obviously very bleak. This person is labelled “You”.
The screen goes black, and then: “You have a lot to lose. MADD: Mothers Against Drunk Driving.”
That’s right, folks: Don’t drink and drive because if you do you’ll become a scary scary cripple and your girlfriend will leave you for your best friend and you will die alone and unloved!
[Of course it's a terrible idea to drink and drive. But I've seen hundreds of anti-drunk driving ads, and they really can send the same message without implying 'Don't drink & drive because cripples don't get no love'. It can be done!]
Berlitz: Bait & Switch
Camera is doing a gradual close-up on a man in a wheelchair. Behind him is a park. The music is the tinkly piano of sadness.
Man: Up until two weeks ago I always said “It will never happen to me.” But today, look at me. Listen to me. Now I speak English fluently.
The screen goes black, and then “Berlitz. In just two weeks.”
I really waffled back and forth on this ad. On the one hand: Hey! It’s a person in a wheelchair and they’re not presenting him as a sad story. On the other hand, the whole point is to “trick” you into thinking he is telling his sad story but it turns out Surprise! He’s not. I feel this falls into the trope of “Disability to titillate”. What do you think?
Michael J Fox on Stem Cell Research (US political ad)
[Michal J Fox has visible tremors from Parkinson's Disease.] As you might know, I care deeply about stem cell research. In Missouri, you can elect Claire McCaskill, who shares my hope for cures. Unfortunately Senator Jim Talent opposes expanding stem cell research. Senator Talent even wanted to criminalize the science that gives us a chance for hope. They say all politics is local but that’s not always the case. What you do in Missouri matters to millions of Americans. Americans like me.
“I’m Claire McCaskill, and I approve this message.”
Pepsi Superbowl Ad: Deaf people tell jokes, who knew?
The entire advertisement is in ASL:
Woman: This commerical was created and performed by EnAble – a network in PepsiCo which supports inclusion, diversity, and the inclusion of persons with different abilities.
Two men are driving slowly down a residential street, looking around and obviously trying to find which house they’re going to.
Passenger: Hey! We’re going to be late. We’re going to miss the kick off.
Driver: Which house is Bob’s?
Passenger: I thought you knew.
Driver: I thought you knew?
Passenger: No I thought you knew!
Driver: I thought you knew!
Passenger: No! I thought you knew!
He shrugs and starts honking the horn.
HONK HONK HONK
Lights in all the houses start to come on. A dog starts barking. People look out their windows annoyed.
One house stays dark.
Driver: That’s it!
Passenger: Yeah, ya think?
They go up to Bob’s house and push the doorbell. The lights flicker. Bob opens the door. Across the street he catches his neighbour’s eye.
Creating an inclsive environemnt for people with different abilities.
Quebec Society for Disabled Children: Give children wings!
[An animated young boy walks onto the screen, looking sad.] It’s not always fun being a child.
[He sits down into a drawing of a wheelchair.] Especially when you’re disabled.
[A butterfly flies around him, and he begins to look happier.] Disabled children are just like any other children.
[The butterfly lands on his finger. He looks overjoyed.] When you open your hearts, you give them wings.
[The butterfly carries him up into the sky.] Please, help them spread their wings. Thank you for helping the Quebec Society for Disabled Children.
What are these advertisements saying about people with disabilities? What examples of people with disabilities have you seen outside of drug commercials? And what impact do you think these sorts of advertisements have on our perceptions of ourselves, and each other?
©2014 FWD/Forward. All Rights Reserved..]]>
Dear abled people who like to glare at people who use disabled parking spaces,
Hi there. It’s great that you’re so conscious that disabled parking spots are for disabled people! I’m pleased you’re so keen to keep disabled spots for disabled people – after all, that’s the law and the right thing. People who aren’t disabled certainly shouldn’t be using those spots.
However, you know what my problem with what you do is? My problem is when you take your anger out on people who are using those spots legitimately. I don’t know if you glare and shake your head and tut because you don’t notice the disability signs/stickers on the front of the car – or if you think they’re faking their disabilities – or if you think those crummy disabled people simply don’t deserve to hog the best parking spots. I don’t know if you do this because you don’t expect to encounter disabled people out and about, so you think the parking spot user isn’t legit. I don’t know why you’re letting dominant narratives crowd out the person there in front of you.
I’d also like you to keep in mind that some people who need disabled parking spaces are prevented from getting the sticker. The red tape involved can be incredibly difficult to negotiate, especially for someone running on the second shift for the sick. Some people who need stickers fall through the cracks formed by the “we need to tighten restrictions because of the tiny number of fakers!” meme.
Just keep in mind that, just as there are a lot of people out there who use disabled parking illegitimately, there are also a lot of people who make life harder for people who are using the parking legitimately.
Don’t be one of them.
©2014 FWD/Forward. All Rights Reserved..]]>
There’s a thing I notice, in narratives about veterans. Only certain people are depicted as veterans of military service, while others tend to be erased. Going on statistics for just one service branch (warning, .pdf), the United States Army, I can tell you that 17.2% of the commissioned officers serving are women. 20.9% of enlisted people on active duty are Black. 2.1% of the Army National Guard is Asian.
But I keep coming back to the women, because when I see images meant to evoke military service and veterans, I see a sea of men. I come from a military family, a mixture of men and women (primarily Navy), and to me, the face of the military is not a white man. Yet, to many, it is; take, for example, the Facebook meme making the rounds right now encouraging people to replace their profile pictures with the face of a veteran. I know several women veterans who have received messages about this meme.
They were not amused.
Women serve. Women are serving. Women have served. Throughout history.
And women become disabled as a result of their military service.
In the past week, National Public Radio has reported on two different issues facing women veterans, particularly disabled women, both illustrating the fact that the Veterans Administration is not serving our women veterans adequately.
Women veterans experience psychological trauma and physical trauma. In addition to the signature tramautic brain injuries of Iraq and Afghanistan, one in five military women faces sexual assault and many women veterans are also coming home with mental illnesses. Skyrocketing numbers of women veterans are homeless and struggling on inadequate medical care and benefits. Many VA centres don’t provide women’s health care services and there are tremendous disparities in health care for women in the military as well as veterans.
But, the military, and the veterans system, was originally built by and for men. That legacy frustrates Kim Rushing, a 20-year veteran of the Navy. From her wheelchair, she scoffs at tables piled with olive drab long johns.
“All this stuff, is all men’s stuff,” she says. “I’m a woman and I served my country, and that’s what I get, is men’s stuff.” (‘Veterans Affairs Scrambles To Serve Female Veterans‘)
Rushing isn’t alone. Women, and their service, are erased and continue to be erased. Because women aren’t officially allowed to serve in combat positions, they aren’t eligible for combat medals, even when they are in combat, for example. But this is about more than medals. This is about a fundamental breakdown in the health care system for female veterans, especially women who are now disabled and served in the military with the understanding that the military would take care of them; this is the exchange, for service, to be provided with care.
Ending up on the streets is a common fate for veterans due to lack of support, and it’s especially stark for women.
Over the past decade, the number of female veterans who have become homeless has nearly doubled to roughly 6,500, according to the Department of Veterans Affairs. Most of them are younger than 35. (‘No Place To Call Home For Many Female Veterans‘)
Many of these women also have mental illnesses, a legacy of their military service. Post traumatic stress disorder (PTSD) is notoriously underdiagnosed in women, which means that homeless women veterans may also be living without diagnoses and access to medical treatment that meets their needs. This is a travesty.
Writing on this ain’t livin’ today, I said:
I never knew my grandfather. I will never know his war stories because he never told them. I don’t need to know them; I don’t need to know anyone’s war stories, I don’t need to know what people saw and did to honour them. I don’t need to know someone’s politics, I don’t need to know why someone joined the military, I don’t need to know what people think about what they did in the course of their military service. None of this information is my business or is relevant to my own experiences and in this country, where the experiences of others are asserted as property by people who have not lived them, this attitude seems to upset or disturb people, that some things are private and demands to lay them out for inspection are not welcome.
This I do know: That women who have served in the United States military are not getting the things they were promised in exchange for their service. That women serving in the military now face restrictions to access for basic medical care. And that I don’t need to know their names or their stories to know that this is wrong.
Veterans Day here in the United States serves as a reminder to thank all those who served, like Ouyang Dan, who writes here, those who are serving, those who gave their lives in service, although of course you can thank a veteran any time.
It’s, for me, also a reminder that my work, of centreing marginalised experiences; refusing to allow people who experience oppression to be erased; and pushing for equal access in all areas of life for all of us, is never done.
©2014 FWD/Forward. All Rights Reserved..]]>
One thing that seems to be very important: YouTube videos! Each of the parties maintains their own YouTube channel, and they stock these channels with videos. Every week or two, I get another email from a political party that really wants my vote (or at least my money), and they often include links to the YouTube channel, or even embedded video. And every week or two, I respond like clockwork, asking them to please provide captioning and/or transcription of the video.
So far, the response has been silence.
I wonder if the reason for this is simply because there’s the new Auto-Captioning service at YouTube, which attempts to automatically subtitle a video a video. Surely this will provide a good working set of subtitles, right?
Ha ha. Ha ha ha.
In alphabetical order, let me show you what the YouTube auto-captioning displays when I try to watch political messages from my current or potential political representatives:
The Conservative Party of Canada:
Image: Screen capture of a YouTube video, with subtitles that read “You don’t think that’s a whole group called american this country and you have to decide”
Actual quote: Voice Over: “Adopted Britain as his home. Called America his country.” Ignatieff: “You have to decide….” (This advertisement is discussing Liberal Leader Michael Ignatieff’s past.)
Here is leader of the Green Party, Elizabeth May:
Image: Screen capture of a YouTube video, with subtitles that read “we’re on Friday evening breeze through across Canada will gather”
Actual Quote: Elizabeth May “…Where on Friday evening Greens from across Canada will gather.”
I will totally admit the Green example is not as terrible as the others. The Greens don’t have a lot of advertising at the moment. (Non-Canadians, this is in part because they’ve not got an actual member in the House. I count them as a national party because they run in all 308 Federal ridings, and May participated in the Federal Leadership Debate.)
The Liberal Party of Canada:
Image: A screen cap from a YouTube vid. Caption reads “the prime minister’s their lives for stroger’s we have a garden”.
Actual quote: “… The Prime Minister is there to inspire us to do our best, and we have a guy who….”
The New Democrats:
Image: A YouTube screen capture. The caption reads “costs are skyrocketing so why does is Stephen harper dead”
Actual Quote: “Heating costs are skyrocketing. So why doesn’t Stephen Harper get it?”
This is what I wrote in one of my last emails to my MP about this issue:
I know disability and accessibility are things you care about too, Megan, so I hope that you will pass along my concerns to the NDP Leadership: Transcribing and subtitling/captioning of video and audio content is an accessibility issue. Providing both a transcript and subtitling allows for more Canadians to be able to access the message of the NDP. As well, it shows a commitment to accessibility and to including Canadians who prefer or require transcripts and subtitling, for whatever reason. As this is something I believe the NDP values, it would be helpful for the party, at all levels, to provide transcription and subtitling for all the videos that they produce.
Of course, subtitling your video (and providing a transcript) are not only for people who are d/Deaf or hard-of-hearing. They’re also for people who have audio processing disorders, who have difficulties understanding spoke English, who don’t want to turn up their volume, or even don’t have speakers or headphones on their computer. They’re for people who just want a transcript or subtitling because it makes their lives easier today. (For example, I have an ear infection and subtitles are the order of the day.)
Every political party in Canada “cares” about “the disabled”. They really do. Each one has a little subsection of their website dedicated to explaining how they “care” about “the disabled”.
I think it would be awesome instead of telling me how much they cared, they’d show it. And one way of doing that would be subtitling their ads, so everyone can know what their message is.
©2014 FWD/Forward. All Rights Reserved..]]>
Now, I read that a Congressional committee has noticed that patient being treated with radiation for thyroid cancer have been possibly exposing other people to, yes, radiation.
Well, let’s think about this for a moment. In the past, people who had thyroid cancer and who were insured and who were given this treatment were allowed a hospital stay so that the very strict regimen of sterility could be followed without putting extra strain on the patient. Then, someone got an itch and decided that it was just too costly to keep this up and that these leaches could just go home and do their own laundry every day. Not to mention, I am not sure what they are supposed to do with their garbage, how they are supposed to quarantine themselves from their families if they don’t have separate wings in their homes to live in, or how they are supposed to get home if they are weak from treatment and live alone.
The new regulations are supposed to discourage patients from taking public transportation, from staying in hotels, and from a whole slew of other things that really don’t take simple practicality into account. I think we can all agree that not exposing people to radiation is all around a good idea. I have no idea how much we are talking about, and the hyperbolic pictures of HAZMAT masks on the paper edition article I read didn’t help, but it must be significant if it is causing such a stir. Though, spokesman David McIntyre says it is “unclear” if the levels are harmful.
I remember getting a bone scan a few years ago and the tech had to wear a suit, and the dye they injected into me came in a lead tube. I was told I had to avoid metal detectors and public transit for a few days and was given a card to show that I was recently injected with radioactive substances. But I was a single mother, and a sailor, and I had no one else to help me out. Back to work I went, showing my card to security, who walked me through the non-metal detector way. I picked up my kid from daycare later, and drove myself home. I imagine that someone who has no support system who might be in a similar or worse situation would have to make similar decisions. So, I can see how people would disregard directions to go straight home.
Perhaps home is a day’s drive. Perhaps home is filled with young children and has only one car available. A hotel and train ride might be the only option, since the loosened restrictions mean that insurance will not pay for a hospital room that is no longer required. Or perhaps there is no insurance at all, and it was all a patient could manage to scrape up the cost of the treatment in the first place. There are so many reasons that these restrictions are not being followed, and I feel like this article, this committee, and this investigation are looking more at the people who are ‘violating’ the rules and less at the systemic problems that cause them to do so.
So, yes, those poor, unsuspecting people who have fallen victim to the carelessness of these cancer patients who have been so selfish to expose themselves to the world are who we should be focusing on. They are the true victims here, not the people who are trying to get healthy again, whose bodies are fighting cancer, and living with poison in them, and who are also now having to deal with the extra burden of a cumbersome set of rules of conduct for how to navigate live with a poison inside their bodies. The conversation is not, nor never is it, about them, but about the people around them whose lives are affected by their treatments, the ways those treatments impact their lives. All about the abled body, never the chronically sick or disabled unless it somehow affects the healthy and able.
Unless Congress is willing to establish a way to provide a place for these people to stay — all of them — I don’t see how a more enforced set of restrictions is reasonable. You can’t force a person to stay in a place they have to pay for against their will, and you should not be able to punish them because they had to use the resources available to them to survive.
These are just my own personal musings. I, of course, have no personal experience with these situations, but I grieve at the idea of restrictions that people might not be able to handle through no fault of their own.
I wonder if Representative Edward Markey (D – MA) and the Subcommittee on Energy and Environment are interested in hearing any of our thoughts on this matter while they re-think the policy.
©2014 FWD/Forward. All Rights Reserved..]]>
So one of the most frustrating experiences of coming to terms with my disability is realizing just how much ableism has impacted my life without my realization. I mean, I knew that this stuff was not really fair or reasonable, but I didn’t really know why.
When I was in the first grade, my teacher told my mother she thought I had a learning disability. My mother’s goal was to prove that I had no disabilities at all, so she had my intelligence tested and I was categorized as “gifted.” It was also determined that I was nearsighted, which required me to wear glasses. Somehow, unfortunately, neither of these solutions actually helped with my problems: I had trouble retaining what the teacher said to me, and I had trouble doing all of my schoolwork.
In retrospect, being marked as gifted was mostly negative. It meant I had more pressure to perform well, that I should be a straight A student, but I never managed this. My report cards are littered with “doesn’t pay attention” and “doesn’t apply herself” and other negative assessments that read to my parents as “Lisa doesn’t fulfill her true potential.” Now, of course I wanted to, but to me grades felt almost like an arbitrary lottery. I never got grades commensurate with the effort I put into class, and no matter how much effort I did put in, I’d get in trouble when my report card had too many Cs and Ds. There was a reason I could make it to the spelling bee state finals and do calculations in my head, and yet still couldn’t maintain any kind of consistent quality of work.
This had repercussions at home. I learned from my father that I was stupid, lazy, inconsiderate, and selfish. I learned these lessons really well. I internalized them. Somehow I was convinced that I was really sabotaging my own school work. His conviction in my potential wrongdoing was such that he would grill me about what I did at school every day once I got home, and the right answer was always “I didn’t do my schoolwork.” If I said I did, I’d be punished for lying. So I learned to lie to him because the lie was the only acceptable answer. And he convinced me I was an inveterate liar, so it was interesting to realize once I got out on my own that I was total rubbish at it.
So yes, from most of my teachers as well as my father, I learned that I was pretty worthless; that I was stupid and lazy. That my problem was that I refused to apply myself and spent too much time daydreaming, or reading novels, or playing games (role playing games, mostly). That everything I enjoyed was a personal flaw, and that everything I failed at defined me. And this has stuck with me for a long time.
This carried through into my first long-term relationship – which was also abusive. But my partner liked to especially pick on my inattention, my tendency to zone out in the middle of a conversation, my forgetfulness, and insisted on treating me as if I was a child to be controlled instead of her girlfriend. She went beyond this, but this itself is apparently a common pattern in relationships with ADHDers – that a parent-child dynamic develops. This is often framed in articles and literature and by non-ADHD spouses and partners as something the ADHDer is totally responsible for, and relationship problems are often blamed entirely on ADHD, but the non-ADHD partner’s ableism is practically never discussed. And being treated like a child, having every mistake scrutinized and berated and everything you do ignored and forgotten takes a huge toll on you. It’s abusive. My partner was abusive in many ways beyond this, so I don’t want to make it sound like her ableism fueled all of the strife, but it definitely had an impact.
Every attempt I made to enter college hit a wall. I would do really well (and learned I was not in fact lazy or stupid) until I couldn’t anymore. I don’t really know how to describe it. I wanted to get my degree, but once I hit that point, college went from doable to extremely difficult. It may have been changes in routine, greater difficulty in classes, overall stress from spending that much energy to excel constantly without a break. I don’t really know. I just know that I would hit a point beyond which it was very difficult for me to continue. And that I didn’t even know how to find support or assistance, that I don’t feel resources for this were really clearly explained to me if they existed at all. And besides, maybe I was lazy and stupid, right?
Most of my jobs went the same way – I’d do a job well until I couldn’t keep it up any longer, and I’d often have to quit because simply going in was difficult. Again, this is hard to describe, how this works. It is not that I wanted to lose my jobs or that I did not enjoy them, but that I’d end up being unable to continue, or that I’d find it difficult to meet basic requirements like punctuality. And I’d be left wondering how I could have sabotaged this amazing job, and how lazy and stupid I must be and how much I must hate myself to make these choices.
And this really was a spiral of self-hatred and recrimination that continued until the past few months. That I was holding myself to standards I had no idea I couldn’t attain without help, medication, accommodations. That my knowledge of ADHD, the background cultural knowledge was so lacking in information that I really had no idea how to start looking into this, or even that there was anything to look into. I spent more time wishing I had done everything better, that I hadn’t made so many mistakes, that I hadn’t lost two promising careers, that I hadn’t apparently done everything in my power to block my own success. That I had no idea I was not only limited because of my neuroatypicality, but because there simply wasn’t any easily accessible information that would have helped me realize what was happening to my life. Even when I saw doctors about my GAD and panic disorder in 2003, the possibility of ADHD never came up.
Since I wrote my two posts about ADHD on Questioning Transphobia, I’ve had several people tell me in comments, e-mails, or chat that they related strongly to the symptoms I described, that by making my experiences with ADHD accessible, people who have been undiagnosed so far – who might themselves have ADHD – know about the possibility and can respond to that information. According to at least one researcher – Dr. Russell Barkley – it is possible that only 10% of ADHDers who have gone undiagnosed into adulthood are diagnosed as adults.
I am not saying that experiencing ableism without even realizing you have a disability – let alone what ableism is – is worse than experiencing ableism when your disability is known. Just that it was a dark moment for me to realize how much of my life has been defined by ableism, and how much I had no defense mechanisms at all to cope with that and how much I had to realign my own understanding of decades of my own life. The end result is good, in that I was able to resolve a lot of my own self-hatred, but the realization itself was a bit shocking.
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©2014 FWD/Forward. All Rights Reserved..]]>
Foolish me! Just like with the Arnieville protests that s.e. wrote about last week, the media is basically ignoring this four-day-long protest in Washington in favour of more important things. Despite repeated hunts by me and several other people, the only mention of the protest, “partial White House lockdown”, arrests, and march is this CNN report, which only quotes White House staff and the ADAPT webpage. Apparently CNN couldn’t even find someone from ADAPT to quote directly. (Also, the photos of the event that ADAPT have posted make it clear that CNN’s report is factually inaccurate.)
[If you would like to read NationalADAPT's tweets, a good place to start is their September 18th tweet, and just keep going from there. Their timeline includes a variety of photos taken of the event, and also will point you towards other tweeters that were there.]
ADAPT has been protesting at the White House at least once a year (sometimes twice a year) since 1997, and has been holding protests in other cities across the US for 25 years. The focus of their protests for the last 11 years has been the Olmstead Decision and the Community Choice Act.
Eleven years ago, in the Olmstead decision, the Supreme Court said that Americans with disabilities have the right to live in the most integrated setting. Yet today, states are responding to budget shortfalls by drastically cutting home and community-based services. These draconian cuts are forcing seniors and people with disabilities into nursing facilities and other institutional settings because they don’t have the services they need to remain independent.
On Sunday, ADAPT held a funeral, complete with casket, to both mourn and bring attention to the number of people with disabilities who have died in nursing homes around the country while fighting to get out of them. Monday involved marching directly on the White House. While CNN reports that 9 people handcuffed themselves to the White House gates, the ADAPT photos and Reports make it clear that far more than 9 people were involved in this action.
The Park Police had closed the sidewalk and street in front of the White House around 10 in the morning as ADAPT approached. When the police used an SUV to block ADAPT and the sidewalk, the bulk of ADAPT charged into the intersection of 15th and G Streets stopping traffic completely. The police had believed they had successfully stopped the line of activists when suddenly all the traffic was stopped and the intersection was packed with activists.
“The people they thought were meek or expendable,” said Jennifer McPhail about the police force, “were the people who had taken their power.”
While ADAPT’s actions continue today across Washington, DC, members who are required to attend court this morning after being arrested have been illegally challenged at the court to produce documentation for their service animals, and need to bring attention to ADA violations to the very people one would expect to be enforcing the ADA.
When a local Washington paper was challenged on their decision not to report anything about the ADAPT protests, their response was first that they don’t cover national protests and then, when it was pointed out this was also a local protest, that it was a matter of debate, and there were protests every day in DC. Other media sources haven’t responded to questions about their lack of coverage.
I do understand this, to a point. Certainly I’ve attended protests that have received very little media coverage, and most of that in either local papers or in grass roots news organizations. However, at what point do we start to seriously question why multi-day – or, in the case of Arnieville, multi-week – protests by people with disabilities are getting ignored? The ADAPT actions have decades of history, and touch on issues that are hot-button topics in the US right now, such as health care, funding for social programs, and the standard of living.
And yet, still, despite everything: we protest, and are ignored.
©2014 FWD/Forward. All Rights Reserved..]]>
Recently, the federal circuit court in California heard a case about whether the city of Hermosa Beach could ban tattoo shops entirely. The plaintiff – a man who wanted to open a tattoo shop in the city – argued that the ban was an impermissible restriction of his free speech rights. The court wrote a long decision (pdf) considering not whether having a tattoo was something protected by the First Amendment, but whether the actual act of tattooing someone was conduct with sufficient expressive content to be considered as speech. So the court was thinking about whether the act of giving someone a tattoo counts as speech – if the tattoo artist is the equivalent of a painter or a photographer and adding artistic judgment and content to the representation, or if they are more like a computer printer printing out text or images designed by someone else.
This meant the court spent a lot of time discussing the idea of “expressive conduct” – behavior that isn’t actually “speech” in that the person is not speaking words, but is behaving in a way that communicates a message or idea and so is protected the same way that speech is. In the United States, the Supreme Court has already considered a whole bunch of activities and determined that they should be protected the same way that speech is. For example, burning the United States flag, wearing a black armband to protest the Vietnam War, and nude dancing are all activities that aren’t directly speech, but convey a statement or message and so are protected the same way that speech is.
I started thinking about the idea of “expressive conduct” – behavior that conveys a message or statement – and was immediately struck by how existence as a person with a disability could be seen as expressive conduct. Using a wheelchair or cane or braces while out in public seems to me to express a statement: “I am a person with a disability, I exist, I share public space with you.” This is, as we’ve discussed here at FWD and many others have expressed, a radical statement, a powerful message. To me, it seems equivalent to the message expressed by wearing a black armband to protest a war – it is a political statement of resistance.
The law of expressive conduct recognizes that not every instance of the behavior is communicating an expressive message. If, for example, I had mini American flags as part of a table decoration and one fell into a candle and started burning while I wasn’t paying attention, that flag burning would not be sending the same message as intentionally burning a flag at an anti-war demonstration. My accidental flag burning would not be sending a message and so would not be protected as speech. Similarly, a PWD alone in their apartment likely isn’t sending any message or statement with the mere fact of their existence – they might be typing or painting or speaking and sending a message that way, but not simply by existing. So PWDs wouldn’t automatically “become” speech – only when their existence communicates a message.
I’m not entirely sure where that gets us. In First Amendment law, when conduct is considered speech because of its expressive content, it is protected by the First Amendment, which means that the government cannot restrict it without passing certain protective tests. So theoretically, arguing that disability is a form of speech would let PWDs argue that governmental restrictions on their presence are in fact restrictions on speech. But since the First Amendment only protects speech from restriction by the government, not from private businesses or in private life, I’m not sure that would add any protections that the Americans with Disabilities Act doesn’t already provide. So I’m not sure this analogy would be helpful in extending the existing legal rights of PWD.
I’m also unsure how people with invisible illnesses (like myself) fit into this analysis. My being in public does not automatically communicate to people that I exist as a PWD, because my disability status is not apparent from looking at me. So I don’t start communicating this message until I affirmatively disclose or mark my disability status.
I also wonder if this forcibly ascribes expression or speech to PWDs who do not think they are or want to express that radical message.
I don’t really have a strong conclusion to any of this – I’m still rolling it around in my head to see what if anything it turns into. But I like the idea of acknowledging that when PWDs with visible disabilities are engaged in sending a message as powerful as burning a flag.
What do you think? It’s ok if you don’t have a clear position one way or the other but just have thoughts or reactions!
©2014 FWD/Forward. All Rights Reserved..]]>
For people who may dislike their bodies, for any number of reasons, these conversations end up being exclusionary, as they are often treated as ‘unenlightened’ for not loving their bodies and they are lectured in an attempt to get them to submit. For people with disabilities, an added layer of complexity is introduced, as it is assumed we do not or could not love our bodies because of our disabilities. Similar complexity can arise for some members of the trans community, who may experience inner conflict with our bodies but feel uncomfortable expressing it, for a variety of reasons ranging from fear of being perceived as spokespeople for the trans community when we are just talking about ourselves, to fear that discussing dislike/hatred for one’s body is not acceptable. Especially when encountering campaigns mandating that people love their ‘natural’ or ‘inner’ beauty, I am left with more questions than answers.
I was reminded of this by ‘Black Torso,’ the piece I featured in my post on sculpture last week. What, for example, is a breast cancer survivor who chooses to get reconstructive surgery supposed to do? The rebuilt breast is not ‘natural,’ so does that mean the patient does not love ou body? What about the breast cancer survivor who cannot afford reconstructive surgery or is not a candidate for it? Maybe ou hates the scar and is uncomfortable looking in the mirror, but feels unwelcome in body image discussions rooted in the idea that ‘love’ is mandatory for all people when engaging with their bodies.
I’d like to start deconstructing conversations about body image to make a seat at the table for people who might feel relegated to the fringes of those conversations right now, and there are a couple of angles that need to be considered with more care in conversations about body image and in campaigns designed to spark conversations about body image.
The first is the idea that everyone must love their bodies. Not all people love their bodies and they should not be required or pressured to; indeed, we should be actively creating a space for people who aren’t comfortable with the bodies they are in that doesn’t consist of ‘we will educate you into loving your body.’ We should talk, too, about the reasons why people may experience conflict with their bodies, and how social attitudes, life experiences, and other things may play a role in the relationship people have with their bodies, without singling out people or shaming them for not loving their bodies, or not loving them all the time.
The second is the idea of ‘healthy, strong, natural’ bodies being celebrated in these campaigns and focused on in language about body image. The fact is that not all bodies are healthy, strong, or natural. Health is something that changes over time from person to person, and while some people may always have healthy bodies, others do not. ‘Natural’ is also not necessarily something everyone possesses, and I dislike the idea that a body needs to be ‘natural’ (who is defining this, incidentally?) in order to be celebrated.
Finally, we have these really complicated intersections between body image and disability, compounded by a lot of social attitudes about disability. Disability is scary, so disabled bodies are scary, and I notice that many body image conversations leave out people with disabilities, because no one knows what to do with us. Looking through many of the responses to the American Able art project, I was struck by the fact that many people were uncomfortable with viewing a disabled body, especially in the context of desirability. If our bodies are so frightening that people can’t see them on television and in ad campaigns, it shouldn’t surprise me that people have trouble fitting us in to discussions about body image.
There doesn’t seem to be a lot of room, in body image conversations, for people who may feel conflicted about their bodies, for people who reject a lot of the ‘affirmations’ promoted, for people who may not fit into the categories some participants in these conversations assume apply to everyone. Are there exceptions to these rules? Conversations where people are thinking about issues like disability and the rejection of beauty? Yes, there absolutely are, but they are exceptions, not the norm, and that is a trend I would like to reverse.
This is what we talk about when we talk about working towards the neutral place; creating a space where bodies and identities are neutral, so there is room for everyone, room for all relationships between people and their bodies, room for people at all levels of exploring their identities and their bodies.
©2014 FWD/Forward. All Rights Reserved..]]>