Wednesday, October 13, 2010

The woman who stole the show


"So, what did you think when you saw the woman in the wheelchair?" I ask Dave.

We're driving home from New York. Tonight we went to see Wicked, a wildly entertaining musical that's the "untold story of the witches of Oz." I'd gone to an event a few months ago, and had gotten two free tickets. Wicked's about friendship and popularity and pretension and green skin and love and power and evil and good and, oh yes, glittery shoes. The Wicked Witch's sister, Nessarose, is paralyzed. As drawn in as I was to the show, I was a bit distracted by her.

"I was definitely noticing her, I felt a connection," Dave says.

"Me, too," I say.

The two of us view the world through a different lens than other couples we know. We notice people with special powers. We feel something for them, a certain relatability. But I tend to look into things way more than Dave does.

"So why is it they HAD to get into how she felt the guy couldn't love her because she was in a wheelchair?" I say.

"Uh-oh, here we go," Dave says.

"Nessa was gorgeous. Do you think they'd EVER cast a person in a wheelchair to be Glinda the Good Witch? Doubt it. And if they did, they have to work it into the plot somehow. Like, you know, Glinda got into a car accident or something. Because they always have to call attention to the person's DISABILITIES, they can't JUST be gorgeous or good singers or talented actors. In the movies too."

"Um, honey? It was a great musical," Dave says, sweetly.

"Definitely. And they probably wouldn't make the Wicked Witch a woman in a wheelchair either because they'd be all, 'OHHHH, NOOOOO, we can't make a person with a disability look BAD.' And I am SURE they'd never cast a person in a wheelchair as a MUNCHKIN because that would be too much atypical-ness in one wheelchair!!!"

By this point, I have worked myself into a tizzy and need to be quiet, which I am sure Dave does not mind.

My head keeps spinning. Now I am picturing Max as the handsome lead guy, and thinking, "Nope, wouldn't happen, nobody would be able to understand him."

Then I start laughing.

"What?!" Dave says.

"I've got the perfect Broadway show for Max to star in: Car Wash, The Musical!"

How amazing would it be to see an actor or actress in a wheelchair starring in a Broadway show that has nothing to do with disabilities?

Photo/Joan Marcus

36 comments:

  1. I'm new to this special power arena, but I'm already tired of people noticing what's different before they notice what's wonderful!
    I should pay attention to what I notice... Maybe I'm guilty too.
    Thanks for the reminder!

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  2. Ick. At first that 'special powers' thing was okay, but now it's just getting patronising... It makes it sound like people with disabilities all have the power to fly or the power to shoot lightening bolts from their finger tips. Why is it not okay to simply state a disability for what it is instead of this all this over-glorifying "special" stuff?

    Also, unfortunately it would be difficult for a person in a wheelchair to play a character who didn't have a disability. When you think about it, it just isn't practical, really.

    I don't mean to cause offence with this comment, but as a person with CP who uses a wheelchair myself, that "special powers" thing really is becoming rather patronising/condescending even if you don't mean it to be. At least, I think it is.

    Cheers.

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  3. Jim Byrnes lost both legs in a car accident. He doesn't use a wheelchair. He often protrays warrior types in movies and TV shows.

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  4. Off to look up Jim Byrnes, cool.

    Anon (may I call you that?), you are welcome to use your real name when you leave thoughtful comments such as "Ick." Sorry to hear you don't like "special powers," I can understand your pov. It's definitely not an appropriate hrase for an adult with disabilities, but Max is a KID. And I'm trying to be the opposite of patronizing. Coincidentally, Max actually does have the power to shoot lightening bolts from his fingertips!

    Also, if you think a person who his handicapped would be unable to play, say, Glinda the Good Witch, that's your thinking. I don't see why that couldn't be possible.

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  5. I'd love to see someone with a disability on tv without reference to the disability itself. But that will never happen as people are always too curious about what "happened". The other thing I'd like to see is a character with a disability played by an actor who actually has a disability.

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  6. I would like to know what event was giving away Wicked Tickets, but I'm apparently attending the wrong events! ;-)


    ˙·٠•●♥ Ƹ̵̡Ӝ̵̨̄Ʒ ♥●•●•
    Tracy @ Ascending Butterfly
    http://ascendingbutterfly.blogspot.com

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  7. There was more to my comment than the "Ick" as you can clearly see, but thanks, I'll remember that. I understand that he is a kid which is why I don't mind when you use it in reference to him (and perhaps other children), but in this post you clearly state that "We notice people with special powers. We feel something for them, a certain relatability." You are talking about adults with disabilities in this context, so basically you're accepting that your phrasing is in fact inappropriate, if you follow your own logic. I'm glad that Max has this power. If you could let me know how to acquire it, that would be cool.

    And that's not what I'm saying. Of course people with disabilities could play a good role, but using a disabled actor is not always practical or possible, because no matter how you look at it, you can't make the fact that they're in a wheelchair just disappear. So therefore their roles are limited. That's what I'm saying.

    Anyhow, I hope Max enjoys his special powers as much and as long as he can... but at some point one must acknowledge a disability for what it is.

    "Anon".

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  8. Hi,


    I must say, I wholeheartedly agree with Mr/Miss/Ms Anon. Y. Mous. As a 20 year old with Spastic Quadriplegia Cerebral Palsy who requires 24/7 care, I find the use of the term “special powers” completely and utterly offensive and downright moronic. By using this term, you are implying that Max’s disability is a “good thing”, like it can be cured or controlled, but sadly, my dear, I’ve got news for you...It can’t and you shouldn’t continue on with this ludicrous fantasy in an attempt to downplay the fact that Max has a serious medical condition.


    Don’t characterise it as a gift from the aliens, or a result of a spider bite, or something bestowed upon him by a great mentor with the ability to read minds, play the clarinet and give birth to albino five legged kittens. Just tell him exactly what my mum and dad told me 15 years ago:


    “You have a problem with your brain, which is inside your head and that is why your arms and legs don’t work so well. It doesn’t mean you are any different to anyone else, it just means you need a bit of extra help to do things” (Or something to that effect). It is quite simple; why the fuck does everyone over-complicate things these days? For Christ’s sake! Having a disability should never be embraced. Granted, it is a problem you can work with, but not something you’d ever desire, like, for example, the ability to fly. Boy I bet Christopher Reeves wishes he could do that again...I wonder if ventilators are able to zoom through the air too?...God irony is amusing...Rest in Peace Chris, hopefully away from any Kryptonite (A.K.A, things like, wheelchairs, buzz words like “Differently-Abled”, “Special Powers” and carers from Kazakhstan in Mankini’s )

    Everyone is a superhero, especially when drunk, until they wind up crashing their car into a tree, or possibly when they think they’re Batman and dive off the roof of a two-storey house into a swimming pool using a large multi-coloured beach towel as a cape and snap their neck cause they think it’ll give their friends a laugh. You may be laughing (well at least I am) but it happened and the poor soul is now wheelchair bound. So the message here kids is: “Don’t drink and dive!”

    Grow up lady. Get some medication as well, coz you know, the Dr. Phil in me tells me you have issues.

    Oh wait, my wheelchair phone is alerting me to some topless Swedish models needing to be rescued. Oh shite...I have a flat battery! Alfred forgot to recharge the Piece-of-Crap-Wheelchair-Mobil!

    Best Wishes,

    James The Super Cripple – Running over your toes one wheel at a time!

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  9. Everyone is entitled to his/her own opinion.

    Just wanted to say that I agree that it would be nice to see people on TV and in the movies who had some sort of "difference."

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  10. Wow. Who knew this would be so controversial??? I think you can call Max's disability whatever you want...whatever works for you...and I think it would be awesome to see anyone with a disability of any kind in a play/TV show/Movie!! Smiles, Ellen!!

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  11. OK, so I have a really stupid question. Do we know for sure that the actress playing the disabled role is disabled in real life? Cuz that would just suck if she wasn't and the disabled weren't even getting disabled roles let alone Glinda...

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  12. It would be cool. BUT my theatre background tells me to not jump on the bandwagon too quickly on this one. There's so much to consider when casting (disability or not) that most people can not give a blanket agree or disagree on this one.

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  13. James, you make good points, though they get buried beneath your insults.

    I understand how this term could seem offensive to adults with disabilities, including people who were disabled by an accident. Here's the thing: I write this blog from the perspective of a parent of a child with cp, not as a person with disabilities. I'm not thinking about adults when I write. I'm thinking of the fact that, say, I don't like the words "special needs" (the more commonly used term for kids) for my son because I feel they make him sound pathetic, and I don't want people's pity. I'd prefer different terminology, when and if terms are used.

    So, yes, I have some short-sightedness in terms of adults with cp, and I'm not sure meds or Dr. Phil would come in handy there. But if you'd like, feel free to send Dr. Phil on over here, as I have some unresolved issues about being forced to eat oatmeal as a child.

    If you read this blog (which it doesn't seem like you have, given that yesterday I wrote about not embracing Max's cp), you'd see that I don't downplay the fact that Max has a serious medical condition. I live with it every single day, and I do what I can do encourage him and make life better for him. I haven't yet had that "This is what cp means" conversation because he's not yet at that level of cognition, though I would explain it in the wise way your mom and dad said it to you.

    Also, I'd appreciate it if you didn't run over Max's toes with your wheelchair. You can aim for me.

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  14. Lynn, the actress is not disabled IRL. Here's a snippet from a recent interview in which she was asked, "Has it taken a lot of work to get adjusted to the wheelchair in rehearsals?"

    Jenny Fellner: "Much more so than I expected! I’m sore in weird places, and it’s difficult adjusting to the raked stage. It became so that just wheeling in a straight line was difficult! I think I’ve gotten the hang of it now, and actually have grown to love all my little wheelchairs, each in their own way!"

    Sigh.

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  15. I think it would like blind casting. The physical appearance of the actor might not match the character...but the audience imagines. We've been doing it with race for years.

    http://en.wikipedia.org/wiki/Colour-blind_casting

    I'm finding the debate over special powers to be really interesting and I'm divided, although I hadn't thought of it as offensive until people brought it up.

    It started as a way to explain the way Max acted to people is public, right? The hot dog lady? In that context "special powers" seemed to put a positive spin on Max's disability to lighten social situations.

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  16. My name is Shandon. I live in South Dakota. I wish I would have come across this blog years ago when I was having such a hard time with all D's CP issues. Didn't know how to feel... I can't tell you how very much I appreciate your perspective of the adult/mom of a child with CP. I feel bad that the adults reading this feel patronized. We are all just trying to figure out how to keep a handle on such an overwhelming life and to do so gracefully. I hope you as "the adults" can take a step back and see it from the parent view (perhaps even yours?).
    Ellen, thanks for all you do!! You are a ROCK STAR!! Maybe you and I could get together some time and figure out a way for our boys to shoot lightning bolts out their arses as some of these folks!!!!

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  17. About actors appearance differing from the character they play, I saw a play this year featuring a very pregnant actress playing the role of a young yuppy witty XVII century non-pregnant woman. It was bizarre at first until we got the cue that, for sure, her character was not pregnant. She was really good and, from this point on, we enjoyed the play without further questioning.
    I can't see why a talented disabled actress couldn't play the exact same role, taken that her mobility (and else) is taken into account by the director.

    Also, you might like to see a french film that was released in 1996 (it was called "le huitième jour", it means "the eighth day") featuring a man with trisomy 21, played by an actor with this exact disability. It's a really good film and it made a lot of noise when it came out. The actor even won a prize in Cannes.

    Have a good day!

    PS: I don't want by any mean to compare pregnancy and disability, I'm just talking about visible features we can see in people...

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  18. I'm not in a wheelchair, but I am black. And I couldn't play any of those characters, either. I think I get what you're saying... There is the "norm" and then there's everyone else.

    As for NessaRose, she didn't believe anyone could love her because she was raised to think about the things she couldn't do. Her sister was forced to wait on her hand and foot. While to some people that may sound appealing, for a child it simply says that you're not capable of caring for yourself. If we teach our children to do the best they can with the abilities they do have, and not focus on what they can't do, they'll be happier, more confident adults. I know I'm preaching to the choir, but that's my impression of that particular character.

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  19. Robert David Hall is another accomplished actor with a physical disability; he often plays characters with disabilities as well. He's best known as Doc Robbins from CSI. (wiki article: http://en.wikipedia.org/wiki/Robert_David_Hall)

    I'm sorry that some of the adults with diswabilities are offended by your attempts to soften some of the edges of daily life with Max's disabilities. I wonder, if they had a chance to ask their own parents about ther experiences PARENTING them, how would they say they feel about such phrases as "special powers" when referring to a child with disabilities?

    For the record, my child has special powers, too. In spite of being nonverbal and having multiple developmental disabilites (including CP), he is able to touch hearts and minds of curmudgeons and strangers every where. NOT kidding. I wish more adults had that gift.

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  20. I don't care what you call it, the general public just needs to stop being so patronizing & self-agrandizing. I want to see REAL compassion for those with disabilities off the stage rather than making ourselves feel like we've made a difference simply by having a side character in a 90 minute show. A little genuine kindness goes a long way.

    I agree, Ellen, you wouldn't find a person with special needs accommodated by actually providing a substantive role. That would be too messy for those who claim to care. It seems that all the talk of "tolerance" and "acceptance" is still nothing but fluff. We need to keep fighting together until it becomes otherwise!

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  21. Will have to go and see this show!

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  22. Ellen-I've been reading your blog for a few months, and must say, I love it and have come to love Max through it.

    And, as an adult with CP, I feel the need to say that I find nothing wrong with you using the term "special powers" to refer to Max and his CP. As you said he is a kid, and you are clearly trying to find a way to refer to his disability positively, not patronizingly. Just wanted you to know that while I can understand the point in other comments as well, I understand/agree with where you are coming from.

    And I have just one question-is 22 too old to start referring to myself as having "special powers"? :)

    -Laura

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  23. I get what you're saying.

    Recently I've discovered dolls with disabilities. They come in wheelchairs, walkers, crutches, braces, glasses, etc... and while I'd love to get some for LJ, I think they should be mainstreamed. Not only will this help parents be able to address questions, it will also help kids perception of what is "normal". And I really don't think they should stop there. Make some tall, short, over-weight, different ethnicity.

    I'd also like to say that I don't think you glorify Max's disability by referring to it as special powers. Every one has a difference of opinion and as you say this is from a parent of a child with special...powers perspecitive.
    That said, there is nothing wrong with looking at things positively. If we were always "woe is me, my son is disabled" I doubt we'd have so many accomplishments.
    I am so proud of my son who works so hard to do anything. He works harder then anyone I've ever known, including myself. I think the way a certain Anon poster's parents explained their disability to them made them cynical and perhaps a bit judgemental. I hope you take their comments with a grain of salt.

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  24. I haven't read every single comment, but as an adult with a disability I'd like to say I think it can be a GOOD thing to embrace it. I respect that not everyone with a disability feels that way, not even everyone with my particular genetic disorder, but it's how I feel.

    I figure I can spend my life being bitter about the cards I was dealt, which I did for awhile, but that gets old. So, I've made a concerted effort to find the positives in my condition. My syndrome makes me really tall and hypermobile, so I can reach things no one else can, and I can contort my body into crazy positions. I've learned to value life in a different way, developed public speaking skills, and had some neat opportunities open themselves up to me. If someone offered me the chance to be healed now, I wouldn't take it; I am truly happy with who I am, all my health problems included.

    I now have a son with special needs/special powers and it's hard to adjust. My husband and I aren't complacent about it, like you wrote yesterday Ellen; we're always going to work to catch him up to the norm as much as possible, but we do want to teach him to embrace his differences and find the really cool things that having autism could mean for him.

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  25. I think it's just how our world works. I just try to see ways that Jude does do amazing things through his disabilities rather than see the limitations.

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  26. I'm sorry I'm the one who started the whole "special powers" thing, because I HATE IT TOO!!!! I HATE IT I HATE IT I HATE IT. I also finally commented on the original post (sorry it took awhile). Call Max, Max, who happens to have cerebral palsy, NOT SPECIAL! ICK! Special makes me want to throw up!

    As far as not being able to make a person with a disability look bad, that so isn't so. It actually tends to be more the opposite. Scholars have spent their lives studying media & disability (I know one) and historically villains have been given disabilities to make them more villainous.

    Think Captain Hook...

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  27. Great post, Ellen. You are a wonderful writer. Keep up the great work.

    I want to say first of all that I believe its important to remember that Ellen writes from the persepective of a parent of a special needs child. I don't know what its like to raise a child with special needs and read her blog to gain that insight. If she wants to use the term "special powers" in regards to her young son because she thinks it aids him during this time of his life - who am I to say no?

    But as an adult man with CP, I am not a fan of labels, whether that label be special powers; disabled or handicapped. Labels to me mean limitations which, as an adult with cerebral palsy, I am constantly fighting against. Look at the word disability - It means "without ability." If thats true, then I am "disabled" when it comes to home repairs because I don't know what end of a screwdriver to hold!

    I believe my parents were very smart in the way that they raised me. They told me the truth about my condition and let me go find my own way in this world. They let me fall, get up, and fall again. My folks constantly told me that I could accomplish great things in the world if I was willing to work hard and not listen to those who would automatically put limitations on me because of the way I walk, stand or run.

    Just because I do things different from "normal" people does not mean its wrong - its just my own unique way of getting things done.

    I think its time we start focusing on people's ability - not their disability.

    Thanks!

    John W. Quinn,
    Senior Chief Petty Officer, United States Navy (Ret)
    Author, Someone Like Me - An Unlikely Story of Challenge and Triumph Over Cerebral Palsy

    http://www.johnwquinn.com

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  28. My husband makes a point of watching the show "Stargate Universe" with Bertrand (our 2.5 year-old son who has a fatal, genetic disorder) because the Colonel Young, the man in charge, has epilepsy just like my son. This is so Bertrand has the opportunity to imagine he can command a starship too, like his Daddy did as a boy.

    My husband also dislikes the phrase "special powers" or even "special needs"- he considers both inaccurate. (Maybe it's a guy thing?) He lovingly calls our son his "mutant" which, given his genetic mutation, is technically more "accurate". (And has the benefit of driving me up the wall every time he says it.)

    They have long conversations in which my husband tries to "convince" my son to expand his mutant powers by growing claws like wolverine (by not cutting his nails when I ask and getting Bertrand to roar) or to use mind power like professor X (by staring at Mommy to get his bottle rather than asking Daddy). :)

    My husband stood in line opening day at Apple to buy Bertrand one of the first iPads. He also rigged a Nintendo Wii so my son can play sitting on a weight shift pad. Everyday, my husband goes out of his way to treat Bertrand like a boy first--a kid who plays and has fun--not a kid with a medical condition.

    My son knows, without a doubt, that both of his parents love him unconditionally and will do anything to help him reach, if not exceed, his potential! (10 months over life expectancy and counting!) And, at the end of the day, I think THAT is more important than any label. :)

    PS - Please don't tell my husband that I may have defended his use of the word mutant. It still drives me nuts! Sigh. (Bertrand loves it, so I am overruled anyway.)

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  29. Wow! This "special powers" identifier touched a nerve didn't it? Without repeating what many others have already articulated, my thoughts:

    I have CP. I've always been used to the words disabled and handicapped. Though, like you Ellen I've always found the term special needs rather awkward.

    I come from a family of smart-alecks. My sister calls handicapped parking, handisnap parking. My other sister wrote a little ditty with the lyric "my mom's on the PC and my sister's got CP." These examples difinitely helped to liven my mood when I was more prone to pity parties growing up.

    I see you doing just that for Max in terminology he can identify with right now and when he's older he can chose his own identifier. Who knows it could be more subversive than anything all of us can think up.

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  30. Speaking from a purely theatrical point of view, I think it completely depends on the role. A real-life person who wasn't disabled? No. A romantic lead? Why not?

    Basically, if the character has room for it, then sure. But if it's going to conflict with an established plot/character, then I don't think it should be shoehorned in just for the sake of inclusion. The original work comes first- whether it's a question of race, gender, size, anything else.

    In Wicked I think it would conflict, due to the paralyzed character's prominence- they'd be all like "Why make such a big deal about Nessarose when Elphaba's in a wheelchair too?"

    By the way, I do love reading your blog :)

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  31. Well, I am SO relieved to see some people writing positively about their disability on here. Bitterness has never done anyone any good. It only causes pain to yourself and to the people upon whom it is "spewed..."

    Has it been hard to have CP? Yes. But, it's also been full of many wonderful things and introduced me to many wonderful people. I wouldn't trade it.

    Ellen, you are a good mother who does everything you can for your son. In addition, you are helping so many other mothers learn to cope. You should only be commended.

    All I can say is that every single child is special. Every one has some special powers. So, really, that label goes without saying. Speaking from the perspective of someone who works with older children of varying abilities, it's never too early to give kids a term for "what they have." Just like you might teach your child about his/her ethnicity and build up a sense of pride. Disability awareness is similar; for kids of all ages and abilities.

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  32. Clearly some of you have forgotten how to take a joke, but it's amusing to me that James' and my comments have caused such a stir. Keep it up.

    As for everyone being special and having special powers... How about we all just hold hands and sing the Barney song? Cos really, this is starting to sound like an episode of Barney... "Everyone is special in their own SPECIAL way!" Maybe after that, we could all compare our "special powers". Bet yours aren't as special as mine, ha.

    Erin (Since I was given permission to use my name when commenting).

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  33. John, Hilary, Marianne: Thank you so, so much for your wise, warm and non-bitter comments. There is so much I and other parents of kids with special could learn from adults with disabilities.

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  34. I saw a performance of "Hamlet" in which the Ghost was deaf and spoke sign language. Oh! and one of my friends with CP had a minor role in a school production of Peter Pan - she got to fly.

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  35. Wow. I'm late to this party, but how did this go from a play about Oz to the Never Ending Story (the one that deals with how medical conditions are named?).

    If you go back far enough, kids like ours were called idiots, morons, crippled, spastic, mental defectives, retarded....and so on. Most changes in terminology has been as a result of the term being co-opted in a cruel way and used as an insult.

    I have always said that it isn't the words that bother me, it's the intent behind them. A sweet lady who must be eighty who lives up the road referred to my kids as crippled and retarded, but she didn't mean it in a cruel way. It's descriptive in her case and just her generational reference.

    If you want to use the Special Powers term, I say go for it. That's your kid and your choice. People don't have to like it, and that's fine too, but they could be a bit less blunt in the way they express their objections...IMO.

    I also don't see a damn thing wrong with letting kids be kids,for as LONG AS POSSIBLE, and not sitting them down for a heavy medical talk with big words and dire diagnoses. They'll ask, and then, in an age/developmentally appropriate way, you answer. It's not that anyone is cheering about physical or mental challenges being a "good thing," it's more about not going out of our way to label (and limit) our kids before they can even spell their diagnoses, so that they perceive THEMSELVES as somehow different or "less than" in any way.

    If you don't label kids, they don't develop preconceived notions about what they CAN'T do.

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  36. I loved that character when we saw the show last year and I was so glad that PunditGirl (then 9) was with me to see it.

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Thanks for sharing!



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