“A Taste of ReelAbilities”

Hi, everyone. I'm Cameron Cundiff. I'm one of the organizers of the New York City accessibility Meetup. That's where you are now.

So if you've got the wrong place, now is your chance. I'm one of the organizers, with Thomas Logan over here, and Shawn Lauriat, in the background. We are live streaming. So hello to our friends on the other end of the camera.

Mirabai Knight, with White Coat Captioning, is providing the captions remotely here. So we'll be having these captions available on the screen, and then we'll have a YouTube recording later on for you to review, if you so choose. So let's see. What else?

I would like to thank Thoughtbot for hosting us today. This is the Thoughtbot office. Thoughtbot is a consultancy that works with all sorts of different companies to build web and mobile applications. Tyson, back here, at the end of the table, can talk to you more about that.

He's a designer here at Thoughtbot. I would also like to thank SSB Bart for their ongoing generosity in supporting the Meetup, and Joly and the Internet Society of New York for graciously live streaming the events. Have I covered everything, guys? Am I good so far?

Time is up? Good. We're pretty casual here. Today's topic is going to be a Taste of ReelAbilities.

And I'll let Ravit Turgiman tell you more.

Hi, everyone. Thank you so much for having the ReelAbilities and myself and Xian here, alongside Kitty Lunn, which I'll introduce in a little bit. ReelAbilities is the New York disabilities film festival. The festival started about 9 years ago, it was initiated by JCC Manhattan on the Upper West Side, and very quickly, it grew to become the largest disability film festival in the country.

ReelAbilities' start began basically with the goal to promote awareness and appreciation of the lives and stories and experiences of people with disabilities. We wanted to bring the wider community together. To gather and discuss these topics and engage with one another. And when I'm saying the wider community, basically it's film lovers everywhere.

Not necessarily people who work in the film -- in the field, I'm sorry, of disabilities or are related to the disability world in any way. And we've been very successful, if I may... With doing so. And the way we do that is basically by presenting first class films.

The best films out there, that happen to have some sort of disability component in them. It's not your typical Hallmarky films that you might expect when choosing not to go to a disability festival. There's no climbing mountains, overcoming challenges. We're just showing great films with universal stories that anyone can relate to.

Another component, of course, is that all films are accessible. And we are providing ASL interpretation, live captioning, CART, Braille materials, audio description, and any other accessibility accommodation that any individual might need in order to participate. But more than that, beyond these accessibility aids, we're also accessible in the way that the festival is structured. We do not expect people who want to experience and enjoy accessible arts, cultural arts and film events to come to one main location, central location, in Manhattan.

Rather, we bring the festival into communities throughout the region. So the most recent festival here in New York -- we started basically with 12 venues. 9 years ago. The most recent addition we had 30 venues that are located -- and actually, the one before was 42 venues.

So we consolidated a little bit. But we've been to 30 venues in this recent edition that ended on March 8th? Oh. Throughout the five boroughs, Westchester, Rockland County, Long Island, two counties there -- and we've just created communities throughout this area, to come and celebrate and enjoy and engage and interact with these topics, with the protagonists, with the filmmakers.

Another thing that is very unique to ReelAbilities is that all films and other events are followed by conversations. We bring in filmmakers, protagonists, people who are experts in topics that the films might relate to or address as part of the story. And it really proved very successful. Beyond New York, ReelAbilities is now a North American program.

And we are in about -- last I count, it's about 15 cities, throughout the country. And also Canada and soon Mexico. So we're very proud of that. And we're looking to expand as we grow.

We are now preparing for our 10th anniversary, which will take place -- you're the first to hear about it. We're just about to announce the date. March 8 through the 14th, 2018. So please, mark your calendars already.

I really hope that the films that you will see will give you a taste of what ReelAbilities is all about. These are four short films that we've shown in the most recent edition. They give you a little flavor of different topics, different stories, different experiences. Also, you know, a variety of styles of filmmaking and maybe age groups that it might be appropriate to -- but you'll see soon.

It's really diverse and interesting and powerful. I will end. Actually, before I end, I wanted to mention -- because all of you are professionals, and part of, I assume, larger workplaces, I want to tell you that ReelAbilities, throughout the year, between festivals, just as we do here tonight, we go to corporate offices, to bring a taste of ReelAbilities into the workplace. We've done that with multiple corporations.

Pfizer, American Express, Axa Equitable, Goldman Sachs -- just name it. And in September, we're celebrating disability employment awareness month. So this is always a great opportunity to use that as a platform to celebrate diversity and inclusion. So if any of you would be interested to learn more about how to bring ReelAbilities to your offices in October or otherwise, any other time of the year, we'll be very happy to do so.

And just generally engage you and have you part of ReelAbilities throughout the year, and for the next festival. I'll say that the best way to contact me is through Xian. No, I'm kidding. Is via email.

It's [email protected]. Exactly.

Perfect!

And now... After I introduce -- say what ReelAbilities is all about, tonight, as I said, you're going to watch four short films. Unfortunately, I'm unable to stay here for the whole evening. But I leave you with the very capable and beautiful hands of Xian, a member of the advisor committee.

So if you don't like the films, she's the one to speak with. But really, the films we're showing -- we've received 800 submissions this year alone. And for six months, a film selection committee of eight people -- all these 800 films. It hasn't been a very easy mission or task.

For the most part, we didn't agree on anything. But we did agree on these final -- from 800 submissions, we agreed on 34 films that received amazing reaction from our audiences this year. So I really hope you'll enjoy it. Xian will also say a few words and have a facilitated conversation in between each film.

And for the cherry on the top, we'll have a conversation with Kitty Lunn, right here, who is the protagonist of the film Dancing on Wheels. Okay? Thank you so much. Enjoy the films.

I'm really glad you have a chance to see that. (applause) (inaudible) (applause).

So is this part of the same one? Do we want to pause here for a moment? And do some Q and A or conversation? Okay.

I have to do a bit of (inaudible). Okay, sure. One second. Joly is gonna switch the stream back so that people on the remote side can hear what we're talking about.

So I'll give you a cue. Once we're back on the stream.

Can you move the mic? It's right by the PC and it's picking up noise.

Yes. How is that?

That is better. Okay.

Gotta give time to absorb it. Because it's been a while since I've seen it too. Yeah.

There's one thing I wanted to mention.

Use the mic if you can.

I'll actually let Xian introduce herself. And take it away. And if you want to just field any questions or thoughts...

Sure! So... As you may have heard, I'm Xian. With an X.

The other Xian. Which is very confusing for me. So, as you heard, I'm on the film selection committee. I'm not a filmmaker.

I am a bit of a cinephile. At least for things that I like. Mostly older films. But I think for me, as an advocate, I run workshops on beauty and self-esteem.

More of the inner shines outer kind of self-esteem work, and that has led me to a lot of different things. The reason I'm here is because Shawn invited us last February, I believe, when I was representing a group called DiversAbility. And it just so happened that -- I didn't realize when I was coming here that Cameron and I were going to meet again. We met at the connectability challenge through AT&T, where he was one of the hackathon winners two Aprils ago.

I can't believe it was that long already.

You keep moving away from the mic and then towards it.

Sorry. We'll trade later. Okay. So...

So anyway, so for me to actually have this opportunity to be here again is great. But also, ReelAbilities was one of the first places that I ever spoke. And it was following a film called Miss Wheelchair America. Have you seen it?

Oh, it's fabulous. Quite like Jed's Day, it had an amazing, awestriking sort of opening scene, I think, in terms of expectations. The first scene of that film is -- one of the Miss Wheelchair Contestants -- actually jumps out of an airplane. And the thing I love about Jed's Day is right away we're confronted with something we don't normally see.

Sex and disability. Doesn't mean it's not happening! Obviously. I don't have to tell you guys this.

So I'm curious. Are there any thoughts about the film? You know, when I first saw it... Okay.

I don't know if they would be so happy for me to say this, but I thought... It's kind of slow and it's kind of mundane. But then I realized that that is the point. Right?

It's the point that this is just an ordinary day in an ordinary man's life who happens to have these certain expectations on him, because of this physical limitation. So any thoughts? Questions? Comments?

Is this microphone live?

One second.

Okay. I'm sorry if I have my back to everyone, but I don't want the same problem. It happens all the time to people with disabilities. We are perceived as being asexual.

So it did not surprise me that the non-disabled man would assume that the woman he saw was his sister. Or some other caretaker that couldn't possibly be his wife. I can relate to that.

Has something like that happened to you in the past? You don't have to answer that.

Well, yeah. As a matter of fact, it has. In fact, when my husband and I went to (inaudible) at City Hall, we were in line, waiting to get the marriage license, and when it was our turn, the woman behind the desk said to me: I hope you appreciate the fact that he's marrying you anyway!

Ohhh!

Yes. Never laid eyes on me. Knew nothing about me or our relationship. And my husband-to-be stepped up and said -- I'm very lucky she'll have me.

Good answer.

And it's... You know, a common thing to feel that people with disabilities are asexual. That somehow it's inappropriate for us to be sexual.

It's true. Any thoughts from the room here? Go for it.

(inaudible)

Mirabai can't hear you.

(inaudible) (inaudible)

Still?

Okay.

You're good.

Okay. One more time?

So as a deaf person myself, and also a captioning consultant... I've noticed many movies have captions. That's great! That's great, to have captions.

But not to have good contrast. It's hard to read some of the captions. So, like, the white on a very dark grey background or black background -- better, like, on black bars, so that way the words can show up, improving the contrast. So that's, like, regardless of the background.

If you post for... Call for... Oh, on call for submission... Right.

So if you add to that -- please add captions with contrast to the call for submissions. Not just for people who are deaf, but people who have low vision, colorblindness, that sort of thing.

Yeah. My vision is pretty awful, and it is hard for me at times too. So I hear that. I will pass that along to the higher-ups.

Do the filmmakers add the captions? Or what is the process?

Well, a lot of them do. And I found, as we were doing this process, that some of them were pretty awful, or the timing was off. And so I was ready to dismiss some of the films, because I said they obviously didn't do the work, and then I found out that -- no, we actually work with them after the fact. So I'm glad that some of the films that were able to be worked on -- so this is something we can talk to future filmmakers about.

That's good.

I had one other comment that I thought -- just hearing that some of these films are used in, like, a professional training sense, I mean, this film would be interesting to me, because it would not follow what I would traditionally see in, like, a corporate training... Because I think that's interesting, to actually be more stimulating for people to think about these concepts. So would this be one that would be shown?

I'm not sure. That is really a question for Ravit, because she does choose the films that she takes with her. And also Isaac. But I, you know, I do think that for me personally, I don't think there's anything wrong in showing a more complete picture.

I think diversity makes us more complete in the first place. But also, understanding every aspect of the life of somebody with a disability is important. So... And, you know, I think you see him sort of go off to work, although we don't see what he does at work.

So I think it's all relevant, personally. But maybe some -- I don't know. It might be up to the companies as well. To see how they may...

You know, it's interesting. Some of the films that we chose were not chosen by the venues. And so we ended up having to drop a few, because they weren't interested in the films as much as we were. So there might be a situation like that in a corporate setting, where maybe they don't find it as relevant.

But I also trust Ravit and Isaac's judgment. I'm sure they've chosen well in the past and they will continue to do so. I hope that answers your question.

Any other questions before we move on? Okay.

(inaudible) (film playing)

So this was a film that...

Turn it back on.

Oh yeah.

That's the end of this film. Thanks. Joly will let us know when we're back on the stream.

All right. We're good.

Okay. And we're back. So this was a film that actually -- there was some debate within the committee whether this was -- you know, because there was no overt disability known. Whether this really counted for ReelAbilities.

I think ultimately, what we decided, though, that since it is about uniqueness, and there is so much uniqueness within disability, and this sort of spirit of difference and celebration of that, we decided that this was relevant. I'm curious to know what you think. But I think it's really a celebration of quirkiness, uniqueness, and how often that does isolate us, if we're not supported in the right way. You know, she does strike me as quite a lonely girl.

But obviously... Yeah. I'm curious what you guys thought of the film. And if you have any thoughts, feel free.

Do I go back to this?

Go for it.

I like this mic. It's like a radio.

So obviously the film was about Other. And the telling thing was the teacher saying -- your parents will be very disappointed if you bring home the little gourd. And so she had to have a big pumpkin, a round orange pumpkin like everyone else had. But the payoff, of course, was that she had the little gourd, and that's the one that she wanted.

And felt... You could tell just by the look on her face that she thought it was beautiful. In its uniqueness.

And I think it's actually -- the interesting part of it is, throughout the first two thirds of the film, when they do pass her this pumpkin, you feel almost disappointed. Right? That she didn't get what she wanted. But I think the wonderful payoff in this case is that she got to have both.

And I think so many times in life, we have to choose between the orange pumpkin and the green. And I think what made it from a tragic story into a good one was obviously that she was able to find both. And I'm not sure, though, that in life it's always that easy. So...

Well, in the eye of the beholder, it's what is beautiful. And so the teacher obviously thought that the little gourd, the little green warty gourd was ugly. And you can see that as a metaphor for people who are different. Being perceived as less attractive.

Early on, shortly after I became disabled, before cell phones -- before I had one, anyway -- I was waiting on a corner to use a pay phone. And this guy was using a phone. And when he hung up, I rolled up to the phone, and his -- this is exactly what he said to me: I hope that this is temporary, because you're much too pretty to be disabled. To be crippled.

Which meant that if I was unattractive, that would be okay. It would be okay. So... Those little subtle things that we don't even think about can be very painful for some people.

I don't know that necessarily the teacher was saying the gourd was ugly. But I do think it is this idea of sort of fitting in and conformity. But, I mean, I agree that -- I think part of why disability and diversity and inclusion has become so much more important is that people realize that there are varieties within a certain category that we may not have, you know... I think the internet and being more connected to all kinds of people from all over the world has made us more aware of the other ways of looking at the world.

And so I don't know that in this case it was presumed ugly, but just the fact that it was not eligible or not satisfactory... That is -- I think one of the problems that I think as a society -- it does seem like we're making progress to sort of -- at least address that issue. And to relook at what is considered acceptable. What is considered -- and I thought it was so interesting, as well, that people -- it was really about other people's perception.

They didn't say -- oh, that's not good enough for you. It was: Your parents will not like it.

Your parents will be very disappointed if you show up with that.

Right. And so I think what you had just mentioned -- it is a great point. That there's these ideas of disability should look like, or maybe even that disability shouldn't be a part of the equation, if you are... But it's okay in certain cases.

It's complex.

Well, you know... People used to think my husband had to be gay. Because he was married to a woman with a disability. Because...

In quotes... "normal" guys... Why would a "normal" guy marry a woman like me? And those kinds of things were said to our faces!

Unbelievable. Just... I know everybody thinks... You can't even imagine.

I mean, I've had perfect strangers come up to me, I'm waiting for a bus, and ask me: How do you go to the bathroom? Or: Can you have sex? As if that's an appropriate question to ask any stranger! You know?

But the fact that they perceive me as less than makes it okay to ask me a very intimate question like that. Amazing. Amazing.

Yeah. Well, one of the strange moments for me -- my second boyfriend, we were having a lot of problems at the end of our relationship. And so it was about the last six months, and he turned to me one day and he said -- he said -- would you still be with me if you could run away? And I said...

What? I said... I could run away right now, if I wanted to. But I thought that that was really interesting.

I was never really concerned with how people saw us. And in fact, most people told me I could do better. So... I had the kind of opposite experience.

When his best friends are telling you that you can do better, it's probably not a great sign.

What does that say about... If they were his best friends?

Exactly! So it tells you that... I had really good taste that one time. No.

But... But... I found that really fascinating. As if...

Maybe there was some insecurity on his part. That if I did not have a disability, that maybe I would have chosen somebody else. But I never expected that. And I still don't know what it means, exactly.

But I think... Yeah. There are some interesting dating and relationship -- long-term relationships bring up a lot of... I think insecurities.

And interesting issues, especially when it comes to disability. I am curious, Kitty, for you, when you were dating, you know, as you met your husband and before, did you go into it with any insecurities on your part, or... I don't get the sense from you that you have any insecurities.

Well, ours was a little different. Because we had been to dinner once and to lunch once. And I was on the way to meet him for dinner when I fell down the stairs and broke my back. So our whole courtship took place in the hospital.

And we were married six months after I got out of the hospital. And back -- I mean, we were married for 30 years, and he passed away in October. But at that time, I mean... No one would talk to us about sex.

Or, you know, what we could expect or whatever. So we had to kind of figure it out ourselves, because the urologist just wouldn't discuss it. And neither would the occupational therapist, for that matter. She came to the bedside at the hospital and said -- asked me what I did.

And I said I'm a dancer. And she left the room and didn't come back! So we had to figure it out pretty much by ourselves. I think that has changed somewhat now, for people going into rehab situations now.

They're a little more open about it. But the discomfort, when I brought it up to my doctors -- they didn't want to talk about it at all. You know? So yeah.

There were things that I was uncomfortable with at the beginning. Because you're seeing me 31 or 32 years later. After my injury. But, you know, the things that they throw in for free with spinal cord injury -- like incontinence and those kinds of things -- that could make a girl insecure.

You know? Until you just figure... You know... There's nothing that's gonna come out of my body that won't wash off!

But my husband was a very unusual man. And we worked through it together. So... And I think that's why our marriage was so successful.

It's like you were his special pumpkin. I'm sorry! I had to bring it back to the movie. It's kind of awesome.

Okay. I'm sorry. I'm gonna stop talking now.

Do we want to continue with the next film? Or do other people have thoughts? Is there anything about this movie that made people feel uncomfortable? Or that struck you in a way that was surprising?

That you want to share? I'm hearing that it felt like it resolved well and it was on a high note. I actually... For fear of opening a can of worms like last time...

The fact that she's hiding this thing, to me, was kind of a question mark. That it's sort of a sign for me of her disability or her... I don't know. Her persona.

And she's hiding that away.

I thought it was the only way she could get it on the bus.

Exactly.

Maybe she couldn't afford to pay for it and didn't have time to pay for it.

Or whatever.

So seeing it as more of like a vigilante kind of move. I like that.

No, but I think it's a great point that you're making. Because I was thinking about also things like... Sexuality and different things that... Or things that we prize and secrets that we might keep to ourselves, for whatever reason.

Because it's precious to us, or because society has its own ideas about it. So I think that's a really great point, actually. And the fact is that she couldn't just have the pumpkin... The gourd that she wanted.

Is, I think, an interesting thing. But... Yeah. That's a really great thought.

Let me know when you're ready.

Who actually went to ReelAbilities this year? Is this all your first foray into ReelAbilities films? Yeah? Everybody was busy back in March.

These guys were. (film playing) (applause)

We're gonna just continue on to the next one and then group these last two -- there's one more left. So we want to make sure that we're thoughtful about time. Captions. Ta-da!

Also you need to learn the sign for captions.

Captions? Left hand? Okay. I'll work on that.

Okay. Here we go. (film playing) (applause)

Just amazing. Really good to see this. It's especially special having the star with us here today. (applause)

Joly, let me know when...

We're good.

Okay.

And, I mean, when I knew that we were going to do this, we had the option to do full length films. But for me, personally, I found myself living with a lot of the short films that we had, and especially Andy and Kitty kept coming back to me. Even though I, until today, hadn't officially met Kitty and have yet to meet Andy, I think that's what great films do. And also great protagonists allow themselves to be vulnerable enough that we feel we really know them.

And obviously, I look forward -- and hopefully will get to know Kitty even more through this conversation. But I just... Especially in your film, there are so many lines that I went away with. And I remember the first time seeing this film.

I was writing your quotes down, especially around the body and accessibility. You know. And I think for this particular group, too, I'm curious as far as accessibility or -- were there things that resonated with this group in particular about Kitty's film? And we'll get back to that a little bit.

Well, I definitely am more of a fan of documentary. And seeing documentary and art fused in this I think was really powerful. I guess I'm curious just to learn more about the studio that -- in addition to the film, knowing that you have this studio in New York. This is...

I mean, is this a thing that is currently running now?

I do have a set of students. We lost that space. That space, a lot of that -- of the dance part -- was done at the High School for Performing Arts. And I had a space grant there for 15 years.

And then they got a new principal. There were four professional companies that would rehearse in the dance studios from 6:00 to 8:30 in the evening. And the new principal decided the building had to be closed at 6:00. And so we lost that space.

So currently I'm working out of Hunter College. It has dance studios there. And I teach little kids too. I'm currently teaching at PS3 in Brooklyn.

And I teach pre-K to 5th grade. And many of my students are on the autism spectrum. The kids that I teach are the ones that the charter schools didn't want. I wind up teaching -- my students are the ones no one else wants to teach.

The woman -- I performed with Krishna, the blind woman that was working in the -- she's totally blind. And she lost her sight about 17 years ago. To narrow angle glaucoma. And what was really interesting -- when Krishna asked me if she could study with me, I thought...

Oh my goodness. I'm gonna have to get a really proficient stand-up dancer. And I thought... She can't see her either.

So we worked it out, and I would either get on the floor and put her body in a position, or... Get on the floor and make her feet do certain things. But she's a remarkable dancer. And I'm teaching a master class at NYU on Friday, and I'm going to bring Krishna, and we're going to do a little bit of dancing.

But I'm going to be teaching students in the masters program who are going to be dance educators. They're the ones who are going out into the public schools. And what's really interesting about that, for the rest of their courses -- they get three years of coursework. For their disability studies, they get two hours.

We're trying to work on that. You know? But that's the thing. The non-disabled dance world -- many people in the non-disabled dance world still don't feel what I do is really dancing.

So too bad for them. I've been dancing a very, very long time. I'm gonna be 67 years old on my next birthday. And that's old for a dancer who's still performing.

That's old. But in teaching, I feel like I have the opportunity to pass on... I had wonderful teachers. I was very blessed.

I had some of the greatest dance artists of the 20th century teaching me. And it's my turn to give back. Because -- where are they going to come from? I mean, I'm not going to be able to do this forever.

So where will they come from? Mainstream dance programs really don't -- in the United States, at least -- don't want to bring artists with disabilities into their programs. In Europe, they're doing a little better with that. But...

Look. I'm one person. I get to get up almost every day and do what I love to do. And my husband Andrew made the chairs that I dance in and that the students are dancing in.

So the chair that Jessica got, when I asked her -- you like that chair? You feel comfortable? That's the last chair Andrew made before he died. So it's...

I've been in the chair for a long time. I hardly remember not being in the chair. And I started dancing when I was 8. So being a dancer is who I am.

And when I had my accident, I felt like my identity had been stripped away from me. It's one thing if you decide, after a certain age, that you want to stop and you're gonna move into something else. But I felt like it was ripped away from me, and I didn't know who I was at that time. But I had been to dinner once and to lunch once with Andrew, and then I was going to meet him for dinner.

And I fell. And that was before everybody had cell phones. We had really live people answering services, with live people who took a message. And I gave someone his answering service number.

Because I didn't want him to think I was standing him up. I liked him! And I wanted to see him again! You know?

So he showed up in the hospital, and I was in for almost three years. And we were married six months after I got out. I couldn't do half of the things that I do, if Andrew hadn't done everything he did. He made it all seem so easy.

And it wasn't... I have two really interesting stories, dance stories, to tell you. In 2000, I did a benefit performance for the Christopher Reeve Foundation. I was on the council of actors equity, when Chris was on the council, before he had his accident.

I had already had my accident. But he was Superman. He was this big, tall, really good-looking -- really good-looking guy. And then he fell and he had a devastating accident.

And he was paralyzed from the neck down. So we were at the New Amsterdam theater on Broadway, and the Lion King was playing there. At that time. Now I think it's at the Marriott Marquee or something.

But I was at the 3rd floor dressing room, doing my hair and makeup, and my husband was in a full tuxedo, sitting on the floor. He had my dance chair in a hundred pieces. Cleaning and shining and polishing. Like tinker toys.

He's in his tuxedo, sitting on the floor, with all of these wheelchair parts between his legs. And then as I got ready, the chair kind of put itself back together. And Andrew helped me transfer into the chair, put the sweater around my shoulders, and took me down to the wings and pushed me out.

That's love.

Because that's who he was. Later, in 2014, I had to have a mastectomy. Should I continue?

Yes, please.

I had to have a mastectomy. Now, Andrew was not a man of many, many words. But he saw a problem. He couldn't do anything about the fact that I needed a mastectomy.

But he went out and got a big plastic storage box, and measured my neck and my arm holes and across my hips, and made me a chest protector so that when I came home from the hospital, the cats wouldn't jump on me. I mean... That's the kind of guy he was. And so at the beginning, when no one would let me take class, we would rent space, studio space, and he would lay on his belly and watch the footprint of the wheels.

And I would say... It's doing this, but it needs to do that! And bring the chair home and he would tweak it. And I think Andrew McMillan was probably the only person in the world making chairs specifically for dancing.

So... These dancers have Andrew's chairs. And I'm trying to pass a legacy on to them. My teacher -- and I'm from New Orleans, Louisiana -- she was the first American who became a ballerina with the Paris Opera Company.

And when I was leaving to go to Washington, D.C., to the Washington Ballet, she said to me Pavlova had passed it to her, and she was passing it to me. And I am trying to pass it to them. So that we can keep dancing and we don't have to keep reinventing the wheel. As it were.

You know? So that's my story. And I'm sticking to it.

So... I have a question. Because I think that you're such a glorious example -- and I did not realize, when we chose these last two films, when viewing them in this order, that your story would be such a contrast to Andy Barrie's, when of course he's newly disabled and struggling with what he can and cannot do. I'm curious from your perspective -- and also, it might not have been right away -- I'm curious -- after you had this accident, how long was it before you started dancing again?

Well, I was in the hospital for almost three years. And then I had five years of physical therapy. So it was a while. It was a while.

Now, you're seeing me many years later. This film is seeing me many years later. I tried to commit suicide. You know?

It wasn't easy. The journey from there to here... I have my moments. Andrew said to me -- being a non-dancer, he would say...

He was physically challenged in a room full of dancers, because he had two left feet. But... As I said before, my identity as a dancer started when I was 8 years old. And it's really all I thought I knew how to do.

And if I couldn't do that, who was I? What was I? What was going to become of me? Because life in general doesn't come with a book of instructions.

But disability doesn't come with a book of instructions either. So we had to work it out. And it took a long time. I mean, you're seeing me after I kind of got it all together.

You know? But it was a journey. And it was hard. But my physical therapist had been a dancer, prior to becoming a PT.

And we made an agreement that after a certain amount of time, I would go back to a mainstream dance class. I didn't know that was a very radical thing to do at that time. Dancers go to dance class. And so I went to Steps on Broadway and put my money on the table and I had the ADA behind me.

They had to let me in. And immediately, I was put on probation. Well, if anyone complains, you'll have to leave. Those kinds of things.

What year was that? May I ask?

1991. So you have to grow a really thick skin. You know? My desire to dance was greater than my desire to not be offended.

So... I mean, shortly after I got out of the hospital for the last time, Andrew and I were gonna go to just a local neighborhood restaurant. Because I was absent the day they taught cooking at school. So we went to this place.

Just a neighborhood place. A casual neighborhood place. And we were waiting in the line. But people coming in after us were being seated.

And we were not being seated. And finally I asked. And the hostess said to me: I'm waiting for the table in the back by the kitchen to open up, because people don't really like to see this when they're eating. Like, I would make someone lose their appetite.

And the thing that's so astounding about that is... She felt very comfortable saying that to my face. You know? I became an activist the next day.

So it's those kinds of things. Your otherness. People still say to me... Oh, you're the one who used to be the dancer!

No. I'm the dancer. So... You have to have a sense of humor about it.

Because you can't... You have to pick and choose your battles. Otherwise you'll be burned out in ten minutes. But I like to think that I just...

Do my work. I let my work speak for itself. I make no apologies about my work. I have a little bit of a different attitude than some of the people with disabilities you might have run into.

Some are very radical and they're in your face, and they want to be known as disabled, whatever they're doing. I just want to be known as a dancer. You know? Maybe I'm a different generation.

But I identify first as female. Of a certain age. Caucasian. Who's disabled.

The disability does not define who I am. I have a spinal cord injury. I am not a spinal cord injury. I use a wheelchair.

I am not a wheelchair. And I know that sounds really like I'm talking to six-year-olds. But people frequently will say if I get on a bus with someone, they'll ask: Are you with the wheelchair? You know, my friend uses a wheelchair.

However, she is not a wheelchair. Those kinds of things. That we are identified by our accommodations. People assume because I use a chair that I'm also very hard of hearing.

And I'm also developmentally delayed. So THEY WILL SPEAK VERY LOUDLY... AND... SLOWLY.

It's frightening. Who has the disability here? So, you know... Medical science is keeping more and more of us alive longer and longer.

And get used to it. You know? We're in the world. It's a choice.

You can choose to live while you're alive. And I know many bitter disabled people who are waiting. They're alive, but they're waiting to die. I choose life.

I choose to dance. That's what I do. I'm a dancer.

I think it can be... You know, I can relate to a lot. And one of the reasons I did not want to advocate, when I was younger, is that first of all, I thought it was the obvious thing to do. Because -- just because I have ski poles doesn't mean I have to speak for every person that may or may not have ski poles.

But also, because I did not identify with many that were advocating, because I found that most of what I heard about was more from the aggressive camp. And that's not my style. I think there's room for every flavor of advocacy, and I absolutely respect the choices that people make for themselves. But for me, I didn't relate to any of it.

But when I realized that people with disabilities might have issues around their body, for example -- this is something that for me as a woman, I had issues, but my disability was -- for me, which is kind of a different way than most people see it -- it was the easy part of my life. That was the one part that I had complete control over. And so no matter how anybody reacted to me, in a lot of ways I was able to reclaim that for myself.

So, for example, when a woman asked me: What's wrong with you? I was getting a pair of glasses at Cohen's Optical one day. And she was ripping at her newspaper, clearly agitated. Going -- what's wrong with you?

And I said I have cerebral palsy, but it's the blessing of my life. Thank you so much for asking. And I turned to walk away toward the... And she started weeping.

Wailing. And crying and crying. I'm so sorry. I just got laid off.

I had the worst day ever. But seeing how you handle yourself, I realize life is not so bad. And...

She's so glad she's not you!

Well... No, no. Whatever the implication was... It did not change what the implications of my life...

The disability in my life... And what it means to me, and how precious it is to me. You know what I mean? So I wasn't going to let how somebody interacted affect the way...

You know, it would have been a completely different interaction, had I said -- I don't know. What's wrong with you? For example.

Which is what I would have said. I'm fine. What's wrong with you?

But because I had enough practice at answering that question, and engaging people, you know, I don't know that I would always react with such grace, but in that moment, it was almost on automatic. So anyway... For me, advocacy has been almost an accident. In the sense that it wasn't until I realized that other people did not have the same experience with disability that I did that I realized we needed to start having...

You know, a dialogue. Honest dialogue. Hopefully positive dialogue about what disability means.

And I think it is different for everyone. I really do. And... I would not presume to speak on how should someone else handle his or her disability.

I can only... I have a hard enough time dealing with my own. But... I am not an in-your-face kind of person.

I would like my work to be in-your-face. But I... As I said in the film, I don't... My disability...

It just is what it is. I don't go around saying why me, why me. Because the answer to that is: Why not you? Would it be better if it happened to your best friend?

I mean, it just -- it's a random thing. I slipped on a piece of ice. I hit the corner of a marble step, and bones shattered in my back. So it wasn't on purpose.

God wasn't punishing me. It just happened. And so you make a choice. You're gonna get on with it.

Or not. And many choose not to.

We have a question.

There's a question.

In regards to the chair that your late husband helped to design specifically for dancing, you said you wanted to pass on dance for future generations. Are you doing anything to pass along the design?

Absolutely! Absolutely. Starting with this guy -- he's actually the company's IT person. For the last year of Andrew's life, he helped learn how to do this.

So yeah. We can. We can.

That's great. And I just want to share -- you know, when you talk about dance legacy, one of the other things that I loved about watching this film is that everyone in your class -- I actually personally know. So it's like... Oh my goodness!

All my friends are dancing!

(inaudible) I'll tell you... The disability community doesn't always love me. And that's okay. Because I don't need to be loved by everybody.

But many of them are products of special education, and I can only speak about special education in New York City. That nothing is much... Nothing is very expected of you. Most of the time they don't expect you to go on to higher education or join of world of work.

So they're never taught discipline. They're not taught that... Of course you can't do it perfectly like I do. I've been at this for 50 years, you know?

They want instant gratification. And if they can't get it immediately, they wanna quit. So it was hard when I was standing up dancing. And it's hard when I'm sitting down dancing.

Well, can I follow that up with a comment and a question? Because I wanted to share with you that Peter, who's in the film, talked to me about the fact that he was very... Oh, thank you for coming! Talked to me about the fact that he was very shy, before he started dancing, about two years ago.

And so I had only met him when he was already a dancer. He's working with Heidi Latsky now.

He's a student. He's not a dancer yet. He's a student.

Okay. But the fact that he's dancing publicly is more what I mean to say. The fact that he's out there was a very big deal for him. And I know that it's changed him internally, as well as obviously physically, to do the work.

So it's been great for me to see that that legacy... I mean, obviously it started here, with you --

Well, Peter's a hard case.

I want to just remind you that we're live streaming.

What I'm gonna say is nothing that I haven't said to him. Peter...

Well, okay. I think if we can keep this more general and universal, I think that would be fair to...

But that's... That's... That's what I'm talking about. That...

You don't become a dancer by having someone put you on stage, when you know nothing about it. And unfortunately, many non-disabled people will do that. Because it makes them feel good. That they're doing something for these lucky cripples.

They're not teaching them how to dance, however.

So I'm curious what your definition of dance is, then. Because it sounds to me that you're a purist for whatever idea of dance you've --

Well, I think there's a difference between community outreach or student performances, student recitals, where anyone is in a class... And a professional performance. And this is the only art form that I have ever known that doesn't make that distinction with dance and disability. Do you know how much bad wheelchair dancing I have to climb over almost every day?

Because... The non-disabled people who are producing it really feel that the audience won't know the difference. The dumbing down. The dumbing down thing.

So... Yes. I'm very passionate about it. And that's why I teach that.

Right. And it sounds to me like you have a certain standard that you hold yourself and your students to. I would also say, though, as someone that runs these workshops on self-esteem, I tell the kids that I teach -- I don't care if you sing badly at the top of your lungs or you -- you know what I mean? If you dance horribly -- I don't care.

As long as you're expressing yourself. And if that's something you want to do.

And as long as you're not calling it a professional performance.

Well, this is a whole another panel. But yes.

I mean... You see my point. I don't care whether they sing well or they dance well. But that's a different thing.

You don't decide: I'm a professional dancer on Tuesday. Because I started on Monday. And somebody put me on stage. And I think this is just my opinion.

I think it's the worst form of discrimination there is. Because the non-disabled dancers who dance with some of these companies -- they're required to have a certain amount of skill in a variety of dance forms. But the dancer with the disability can come in on Monday and be on stage on Tuesday. And that wouldn't happen -- I mean, you don't go to the Metropolitan Opera if you can't sing!

You know what I'm saying?

Well, I think... Yeah. I mean, I think it depends on expectations, and also you're talking about also venue. I mean, if you're doing a school performance, it's a different thing.

Or singing in your shower or dancing at home. But I also would just say that I think everybody has the right to dance, whether they're professional or not.

Absolutely. But then... But then... How do we aspire to something better than the Jerry Lewis telethon?

If we're not willing -- if you say you want to dance and you want to be in a company, you have to be willing to do the work.

I think there's a really good conversation here. And we should continue this maybe as an ongoing discussion to follow up with the group. I want to time check. It's 9:06.

And I also want to give you guys a chance to ask any questions. I feel like... This has been... I mean, obviously there's a lot to be said, and we're saying it.

But we'd like to hear from you as well.

Yeah. We can take 10 minutes. Tyson, are you okay being here for... Okay.

Tyson needs to be here. So yeah. Let's take a couple more minutes. So do people have thoughts or questions they want to share?

Or would they like to hear us argue?

I don't think we're arguing.

Let's focus it on the films as a starting point. Were there... What stood out to you as challenging or exciting or surprising for these last two films? And do you want to share that?

Or do you have questions on other aspects of the films?

The one about the Parkinson's disease -- it just brings up a lot of uncomfortable questions, I think, about this kind of social model of disability and medical model of disability, where people are saying -- you know, they can own their disability. Say I don't need to be healed. Or I don't need a cure. But on the other hand, it's pretty amazing that he can get back some of those functions.

So yeah. It's just...

Kind of a challenging grey area.

I agree that... Parkinson's is a tough diagnosis. Because it's a progressive, degenerative situation. And the fact that he was a candidate for the deep brain stimulation and did it, and regained some of his function -- we don't know how long that's gonna last.

But Parkinson's, although it can strike young people as well, as in Michael J Fox, but it's primarily a disease for seniors. Mostly. And it's hard, because I'm certified in dance for Parkinson's. That...

It's hard for -- particularly men with Parkinson's -- to try to learn a new way of being. It's very difficult. And for him, he said -- I wasn't going to do that. And this allowed him to claim his life again.

He said he thought he had a future. And I thought that was very telling. I think medical science, one of these days, is gonna be able to deal with all of this in a better way. I thought the film was wonderful.

And I think that the Parkinson's Association should be using it as a film for people with -- newly diagnosed with the disease -- to realize that life doesn't have to end as you know it.

Right. And I think... Well, there was another film that we thought about showing you. But it was three years old.

And I knew you guys wanted fresh... Fresh meat. You know, only the best for you guys. But one of the reasons that it was a great candidate is it brings up a lot of these moral issues with technology and with, you know, whether it's a prosthetic or improving someone's life -- where is the line where it's now becoming...

Either impeding one's life or a source of liberation. I would love to hear... I don't know how many of you are technologists in the room, but I would assume that you're probably more tech savvy than I am... If there...

I mean, where you stand on that sort of moral ground... It's complicated. But I'm curious if there are any comments or thoughts about that.

So the question is... Between treating or fixing disability, versus... Well, I guess I'm just gonna answer the question. I have opinions.

I think our job in general... Not just people who don't identify as having a disability, but just in general... Is to change the way we configure the world, that removes the... Disability.

That removes the obstacles.

And the stigma.

Yeah. The stigma. He was horrified. That he had dementia -- or Parkinson's, sorry -- that he was horrified, because to him, it meant that he couldn't engage in the world in ways that he was used to.

What if the world that he could engage with -- because we've created affordances for that, that are not just limited to people with Parkinson's, but just in general?

I think... I mean, I think that's a utopian analogy. But Parkinson's is a disease. Paraplegia is not a disease.

Paraplegia is a condition. My spinal cord was interrupted. I don't have a disease. Parkinson's will kill him.

Paraplegia will not kill me. You know? So I'm likening it unto... It's not a cancer.

But if you have a brain tumor, that was operable -- I have a friend right now going through intense chemotherapy for a really nasty brain tumor. Medical science would throw everything it could at that. And the individual would want that. But if you look at cochlear implants for the hearing impaired...

And particularly from young Deaf children... The Deaf community -- some in the Deaf community are very against cochlear implants. Because Deafness is part of their culture. I think it's up to the individual.

Sure. And I would say in this case, specifically -- he was afraid of the disability. He wasn't afraid of the...

He was afraid of losing his independence. And he would. He would, because Parkinson's eventually... Untreated, you get locked in.

You become absolutely stiff. And locked in. No facial expressions. You can't speak.

Because you can't move your tongue.

I mean, if I had a chance to sit with Andy, I probably would have talked to him before this and said -- listen, you know, you have so much that you can do. And focus on what you can. That's probably what I would advise, if I were just sitting with him. But I have lost a lifelong neighbor, who was very dear to me, to Parkinson's.

So obviously -- but this is the thing. It is a very complicated issue. We want -- there are certain areas and things that need so desperately improvement. And I hope that it motivates us all to do what we can.

And to be patient. I mean, you can... People with Parkinson's often have that shuffle. Kind of little shuffle gait or tremors.

Be patient. If they're in the supermarket line ahead of you. That they're doing the best they can out in the world. That I would encourage them, if they're not allergic to the medication, or the side effects of the medication are not so horrendous, he talked about the dyskinesia.

Because sometimes the side effects can be worse than the original problem. But medical science is making tremendous strides.

I want to be very clear that I am not -- I don't have... I don't know enough about his situation. And I wouldn't claim to make a medical statement. But what I'm talking about is...

Creating accommodations for different types of abilities. So the example of being in the grocery store -- you're being patient and you're being respectful. And the same thing with technology. We can be patient with people by creating tools and technologies that are accommodating.

Absolutely. And the thing about that -- particularly for some people, who have ALS, Lou Gherig's disease, who lose their ability to speak right away, and have to use a board or a speller... But now they're coming up with computers that they can focus their eyes. It's almost like a visual Dragon Dictate kind of a thing.

So anything that is helpful... That's better than a board with the alphabet, and having to point -- will be helpful. Now, we can't always make the person embrace the technology.

Well, I think what's so great about the work that everyone's doing in this room, and why this is so important to talk about here, is that I don't think anyone here -- from knowing you -- wants to change somebody. But it's just about augmenting their reality to fit their own needs and finding technology that enhances lives. And makes -- for example, with ConnectAbility, I know that Cameron created something that allowed for people with blindness to be able to interpret photos.

That's a huge part of our technological experience, is seeing what was there. So that's something that helps somebody to engage more fully in their lives. So I just want to applaud you all for the work you're doing. And the way that you're making a difference.

And to go a step further with that, making sure that the people who could really benefit from it have access to it. Because these new technologies are not things that insurance is gonna pay for. You know? About 10, maybe 15 years ago, Johnson and Johnson came out with a wheelchair called the iBot that would climb stairs.

It was $50,000. It was a magnificent thing. I mean, somebody who couldn't even walk up, who all of a sudden became a quad, would be able to go up and down the stairs. It's a huge thing.

But insurance wasn't gonna pay for it. So the people who really needed it were never gonna get access to it. And they stopped making them, because...

There was no market. Nobody should pay $50,000 out of their own pocket.

Small. But if there was some way to include philanthropy into this mixture, that people who really need this technology could have a shot at it... Would be phenomenal.

Well, I think we have overstayed our welcome, maybe, a little bit. Time-wise.

This has been awesome, to have you both here. And all of you. Thank you for coming. And I want to say thanks again to Thoughtbot, thank you, Tyson.

And to Joly.

And to Joly. Yeah! (applause)

White Coat Captioning, Mirabai. (applause)

Speechless. And SSB BART, again, a sponsor of ours. We have this Meetup -- the first Tuesday of every month. We're on Meetup.com/a11ynyc.

The video will be on YouTube, and we'll post it to this event. Sign up here if you're not already -- the people are here because of this. But for people on the live stream. And I think that's it.

(applause)

Thank you, everybody.

We should start moseying. Normally we stick around and talk. But...