My guest for this Glass Half Full podcast episode is Patrick Regan. Patrick is a young man living in Alaska with SMA (spinal muscle atrophy) who uses AAC to communicate. We’ve gotten to know each other through online BORP classes — Tai Chi and Pilates.
Our communication previous to our Zoom podcast recording was through Zoom’s chat. Patrick is not able to speak and uses technology to communicate via text or assisted speech.
Our podcast recording was the first time I actually saw him live since he usually has a photo of himself in the Zoom window. And he varies the photos so I’ve seen him dressed up for different themes especially in the Rumba with Tina dance class.
Anyhow, Patrick has proven himself to be quite tech savvy and I wanted to learn more about the AAC (Augmentative and Alternative Communication) he uses.
The lyrics to Don’t Laugh at Me speak to anyone who has felt like an outsider. Whether or not you were bullied as a child, this song will likely resonate with you. Steve Seskin, the singer-songwriter, and his co-writer were first inspired by a young girl’s experience of teasing in grade school. But, the song encompasses inequities experienced by those living with physical and developmental disabilities as well as people experiencing hard times.
A few months ago I [Leslie] first heard the song in the online dance class, Rumba with Tina. Many of the other virtual dancers were familiar with it and sang along. I just cried. After the class I googled the song title and discovered I knew the songwriter. Steve’s wife, Ellen, has been a participant in the Northern California Myotonic Dystrophy Support Group I facilitated. What a small world!
Steve’s songs have been recorded by recording artists such as Garth Brooks, Reba McEntire, Waylon Jennings, Tim McGraw, Colin Raye, and Mark Wills. Visit Steve’s website to learn more about his music and check out the organization Steve is involved with: Operation Respect.
Traditionally the month of October is the time to become aware of people with disabilities — either a visible or invisible disability — but here we’re drawing attention to all those who face physical and mental health challenges. With 1 in 10 Americans diagnosed with a rare disorder (whether it’s a visible or invisible disability) and all of the others making up ~ 25% of Americans with chronic health conditions, let’s practice an awareness on a daily basis.
Sunny Ammerman, NORD Ambassador for Indiana, talks about spoon theory, her role as a Patient Advocate for NORD and the Pituitary Network Association, and her blog, InsomniaDoodles.
The Pandemic has brought many changes; for me, it’s ushered in the next chapter of my life. Perhaps the final chapter? With mobility challenges, it was one of two choices: home modifications or move to a new house. I chose the latter. The transition could be bittersweet but I think I’ve gained more than I’ve lost. I am closer to Nature and getting more than my usual Vitamin N dose.
Shortly after I moved from the East Coast to California in 1989, I had the opportunity to visit Mendocino when I was producing a documentary about women rabbis. Ever since that experience I’ve visited this beautiful coastal town.
This past May was filled with online accessible movement classes for the May Movement Challenge. Once the month of activity ended, all I did was organize, pack, organize, and pack. The move occured in mid-August and here I am…ready to continue podcasting.
Do you see images of yourself reflected in popular media? As a person with a chronic health condition and/or disability, is your life reflected in movies, television, print, or social media?
In this themed podcast episode you’ll hear from Christophe Zajac-Denek — an actor, musician, surfer, skateboarder, and little person — whose podcast, I’m Kind of a Big Deal, explores the unique lives of people with dwarfism. Christophe has worked in Hollywood movies for 11 years but rarely do you see his face.
Lindsey Kizer, recently diagnosed with narcolepsy, appeared in an earlier podcast episode. Her experience of narcolepsy reflected in media has usually been a joke with the character falling asleep mid-sentence.
John Poehler is a published author and award-winning blogger in Colorado. Diagnosed with bipolar disorder in 1999, John’s memory of mainstream media’s representation of people with bipolar disorder was far from accurate.
Daniel G. Garza, an HIV/AIDS patient leader, advocate, and educator talks about the first movie where he saw characters portrayed with HIV/AIDS. Daniel has a blog/podcast and YouTube channel.
Ania Flatau, an avid dancer born with spina bifida, was featured in a previous podcast episode, Ania has never seen spina bifida represented in popular movies or television but she is quite proud of a certain wheelchair skater, Aaron Fotheringham.
For those with myotonic dystrophy, like myself, all we have is this documentary, Extremis.
Transcript
welcome to glass half full with leslie krongold she shares her stories experiences and knowledge of living and coping with a chronic health condition learn about tools and resources and hear inspirational interviews that help you to live a life filled with quality and dignity with two decades of support group leadership leslie’s ready to help you make lemonade out of life’s lemons are you ready are you ready welcome to the glass apple it’s our first episode for 2021 took a little break no vacation just working on social media the website search engine optimization oh so many things behind the scenes but we’re back this episode is all about how we’re represented in popular media on television in movies print and social media whether we have a chronic illness a disease and or disability are we seeing ourselves reflected in popular media i know i’m not i think i can safely say i’ve never seen a character with myotonic dystrophy on a tv show or in a movie well there is a documentary it’s called extremists extremists extremists and it’s about a palliative care doctor and one of her dying patients has myotonic dystrophy it was incredibly painful to watch and several years ago there was a tv medical drama called royal pains i didn’t watch this series but i saw facebook posts from people in my patient community that there was an episode that mentioned myotonic dystrophy so i mean sure i found that episode i uh i marched it only to be let down it mitotic dystrophy was mentioned as a possible diagnosis for a patient i don’t even think you saw the patient but it was quickly discounted so like you could sneeze and miss the whole thing so again to thinking about the power of medium representation over the last few months i’ve interviewed a few people people with different health conditions or disabilities to hear if they felt represented in popular media the first person you’ll hear from is Christophe Zajac-Denek that’s a hyphenated last name not just multi-syllabic i met kristoff at a virtual podcast conference he’s originally from detroit but because of his avid interest in surfing skateboarding and punk rock he made his way to southern california Christophe identifies as a little person and has a podcast called i’m really a big deal he shared with me that there are between 200 and 250 different types of dwarfism and people exhibit different symptoms depending on which type of dwarfism they have the condition that Christophe has is called cartilage hair hypoplasia in your lifetime how have you seen the media change in the representation of little people and when when did the term little people become i’m assuming it’s acceptable yeah like are people that you met in your community do any people resent that term or is it a term that came out of your community sure yeah those those are really important questions the tour i’ll start with the term little person the term little person is acceptable um you could also say dwarf however when i’ve posed this to guests on my show some of them have strong feelings
in us in a way that they don’t that doesn’t define them and so they don’t want to be called a little person or a dwarf they just want to be called by their name and just like we all do you know your condition does not define who you are so in that same breath that’s the same with us you know little person is it’s it’s fine it’s pc so is dwarf you know um [ _ ] or the m word as people refer to it as is not okay um you know but words are just words in a in a sense and if if somebody actually wants to come up and have a conversation with me and say you know if they were to call me a [ _ ] or something like that and i wanted to if i saw value in the in the conversation or you know where where this was somebody that was just maybe misdirected or something like that and even if they’re not you know it’s still okay to say hey that’s offensive and that’s not all right to call somebody out like that my name is Christophe in fact another guest on my show does that and he is incredibly brave um whether they call him out as an offensive term or not he will go up to people and say hey you know the proper terminology is this but also my name is joseph and it’s nice to meet you and i was born this way and he interacts with kids on this level and i i never would be i i’ve never been able to do that before you know maybe this past year or two because you know it’s still accepting yourself and all of my friends that i’ve shown that to as well they’re like that’s so cool i don’t know that i got the balls to do that just to you know go up to a mother and a child and to confront the situation and and because with each situation that passes if it’s not rectified or if there isn’t some sort of positive interaction or a teaching moment or something like that that’s a moment that’s lost and that’s another moment that goes by where it’s okay to maintain confusion about how to interact with us or other people with disability you know and to me the whole reason why we have that is because the media doesn’t include us you know i’ve worked a lot of show i’ve worked in hollywood for 11 years and you’ve seen my face once maybe twice you know and it’s not because i haven’t worked it’s because hollywood covers me up for everything you know my face is covered in prosthetics or makeup or just costumes and masks and crazy wardrobe and things like that and trust me i want to do that stuff because it’s fun and i can do that stuff and i need the work so please pay me but also you know you just complimented me on my face and i’m not searching for compliments but i’m not this disgustingly grotesque object that seen in a commercial or in and i’m not saying myself i’m saying all of us you know everyone everyone that meets my friends with dwarfism think that they’re incredible they’re like your friend is so cool how they’re so awesome i never you know knew another little person before them or you know before you or whatever and it’s the personality that shines through right and that becomes inaccessible when little people are hired as props or just warm bodies to move around a costume or some foam or something like that and so that’s how i see how society sees us you know and it’s taken me a long time to figure that out because remember how i said i would get paid you know 10 to 100 times as much you know in a costume as i would get playing music well there’s the there’s the hook right there right money but then once you start to think about it and you you’re thinking okay well i’m i’m not getting any equity on my face or my skill because i’m in a costume they could have hired anybody and there’s just a list and if whoever said the first yes is going to get the job so it doesn’t matter you know what i look like in that regard and i think that that’s sad and i i do think some stuff in hollywood is turning around for the better with that i mean peter dinklage is blazing a trail and he’s awesome and i’m i’m really proud of him and what he’s done and the station agent i love that you mentioned that film that film is is incredible that when i first saw that i was thinking who knew who knew about me this is crazy it’s actually i’ve identified with that so much and just more of that is what i think we need and you know even when there are certain things that in my eyes are exploitative i still see there’s a part of me that still sees value in you know like the little women of la and dallas in new york and stuff i mean it’s a reality show so there’s going to be ridiculous drama and things going on but still you get to see little people you know it’s it’s not i i don’t see that as steps backwards i see it as steps forward even though it’s it it’s this fantastic thing and it’s it’s reality tv and stuff like that i i respect that there’s a show that that shows us you know and and because you have to work on opening the door somehow and i think that you know what tara created is important and it’s good and it’s gotten attention of a lot of people the next person i spoke with is Lindsey Kizer in north carolina Lindsey appeared in an earlier podcast episode about coping with COVID she was diagnosed over a year ago with narcolepsy what do you think the biggest misconception people have about narcolepsy you know whether it’s friends or family members just in general i think you know most people think it is like what you see on tv you know where someone can be you know mid-sentence or you know doing whatever normal activities and they just in an instant fall asleep out of nowhere and that’s not how it happens at all you know i don’t really know where that has come from um because even that’s not even something recent as far as the past few years you know that’s been over time and it’s you know being diagnosed i really saw how people really believe that you know co-workers not really friends because they had kind of seen some of the progression up into up to my diagnosis but i’d even say acquaintances and even you know new co-workers and people that had met me after when i say have narcolepsy i get the question either what is that or wait so you’re just gonna fall asleep while you’re talking to me that question would make my would make me cringe so bad for so long how does popular media tv television books and you know i guess social media too how how do they portray narcolepsy i mean it for most people it’s a joke um you know one of the first movies that anyone ever mentions is always deuce bigelow um and he goes on the date with the girl and she just you know middle of dinner after he drops her off at the house you know she’s falling asleep out of nowhere and that really is the image for a lot of people that you know i’m gonna be talking to him or sitting at dinner and i’m just gonna fall asleep you know my face will be in my food um you know i’ll fall and hit my head something like that and a lot of them after they you know spend time with me you know they do realize that that’s not true or some of the ones that you know had that perception and had no idea i had narcolepsy you know that does change social media i do think is starting to do a really good job especially thanks to some of the organizations at trying to correct that narrative because there are a lot of people that are very outspoken about that not being the truth on social media and i do think that’s starting to but that’s definitely a big mountain to climb because it has been something that’s you know been drilled into people’s heads for many years thanks to movies tv shows and who knows where this idea came from well you know i i never saw deuce bigelow um but i did see rumblefish did you see that okay i have to interrupt for a moment now i’ve since realized it was not rumblefish i saw i mean i didn’t see that movie and it’s by the same director gus van zant but it’s his other movie my own private idaho from 1991 which features the actor river phoenix as a character with narcolepsy it’s older than deuce bigelow so maybe that’s why you haven’t seen it okay and and that was the first time i think it was river phoenix who was in it do you know who he is i have heard the name i could not think of that face off the hell in my head right now well he’s uh he’s since deceased but he is or was joaquin phoenix’s brother i guess his older brother and he was in a movie um gus Van Zant i think that’s the filmmaker and it was very it was kind of an art house movie so it’s very attractive to visuals but he river phoenix’s character did have narcolepsy and for me that was the uh first time i ever heard of the condition and i was probably in high school or college so it could be like 30 years old the movie so maybe but it was a drama and then so it wasn’t you know i it would be interesting for you to see it and then tell me what you uh what your take on the portrayal is because i i’m sure it was a bit more empathetic than a you know comedy like so many fallen you know their head in the soup or something i definitely will have to check it out because i have not seen it come up you know most of the tv and movie portrayals of it it is more of you know a comedy show or movie so that definitely would be interesting to see you know if it does have more of an accurate portrayal for sure back in october of 2019 oh so long ago when we traveled freely i went a trip to las vegas to attend the health conference i went from wego health it was a huge conference and it’s hard to imagine being in a crowd like that now but i got to meet other patient leaders from all over the country and one of those patient leaders is John Poehler john lives in fort collins colorado and he wrote a book which was published in 2020 it’s called this war within my mind based on the blog the bipolar battle i think it was right before christmas that i talked with john via zoom and we were both well bundled for the cold anyhow john really stood out for me at the conference he’s very warm and friendly so i have looked forward to including him in this podcast so you were diagnosed in 99 right right yeah so in the 21 years how have you experienced people’s reaction and understanding uh to bipolar condition you know when you when you talk to people has do you feel like people are more understanding now than when you first were diagnosed oh definitely definitely beyond the shadow of a doubt because when i was first diagnosed i know a lot of people when they are diagnosed they kind of they deny it at first they’re like oh my gosh why me i was actually really excited about it because i’d been searching for answers for a few years and so to finally have a doctor say john this is what you have and it matches up completely and not only do you have this but we can manage it it’s not like a death sentence or anything we can we just need to find the right treatment for you and so i shared it with a lot of my friends my family and so forth but i found out real quick that especially back then there was a huge stigma i lost a ton of friends um and i just i had a lot of bad experiences with broken friendships relationships because of my illness and actually i haven’t really been open about it until the past i started my blog at the beginning of 2017 and that’s when i just decided i’m gonna tell everybody you know i don’t it doesn’t matter to me anymore and i actually have a good response and that’s why you know when we met last year in las vegas you know getting that award on twitter that was really showed me wow people are starting to understand more and you know there wasn’t a wego health back when i was diagnosed there weren’t any of these huge organizations that you see now and so it’s it’s definitely a lot less i feel a lot less stigma compared to the way it was back then you know i don’t necessarily think like in you know mainstream media i don’t feel like it’s portrayed as accurately as it could but i mean it’s better than it was back then how has the media in popular media whether television books movies uh celebrities you know coming out how how has it changed over the years from my perspective just from what i’ve you know i’ve experienced when i was first diagnosed i tried to watch a bunch of the movies that you know portrayed characters that had bipolar disorder and i couldn’t relate to any of them at all it just seemed like they were more stereotypes of what someone with bipolar disorder lives with and the past few years i’ve seen a bunch of new movies come out and they’re getting closer but in terms of portraying portraying us as a character on tv i haven’t really been too excited with what i’ve seen there’s one movie i’ve seen that the director he has bipolar disorder and he acts in it and it’s an independent film and i saw it last year i previewed it and that’s probably the closest that i could relate to because it was from his story it was based on his life and i totally could relate to that so it’s come a long ways that’s for sure in terms of like actors actresses um people on the you know that you hear who are some examples of kanye west yeah yeah that’s i’m yeah that you know yeah that’s kanye west i know he i know he has bipolar disorder and it’s you know i i feel bad for him because you know i could you can see that he’s suffering and we have i have no idea obviously we don’t have any idea about personally what’s going on with him but seeing his outbursts and stuff i mean i can relate to some of how he’s acted so in terms of the reality of what like untreated bipolar disorder looks like i think that you know that he’s an example of that um but there’s others too there’s a there’s a gentleman on a general hospital in maurice something i’ve man i wish i don’t remember the name names too well but he’s a i i’ve i’ve heard him speak and i’ve read articles in bipolar the bp hope and he is great like he speaks out and i really like what he does so the the actor is on the as bipolar but not yeah yeah oh okay yeah he actually has and i think they put it in the script i’m not sure but in terms of him and talking about it it’s for me it’s it’s awesome to see someone in a light like that that has you know so many followers so many people that he’s in the spotlight and he feels so comfortable just talking about mental health bipolar disorder that’s i think that’s a lot different than way back when but then of course you know we can’t leave out carrie fisher i mean she was uh she’s been you know spokesman spokeswoman since the very beginning so and she’s been always just so cool so yeah no i always forget that uh she did come out at some for me i think the most you know just as terms in terms of a character the main one i think about is from homeland claire danes yeah you know you know how different communities i’m i’m jewish and you know when something comes out in the media and people always go is it good for the jews is it bad for the jews so i always think that different sort of minority communities do that you know so was that portrayal how did people in the bipolar community was there talk about her character and there was actually i think she actually uh spoke with uh influencer at some somebody who has bipolar disorder and kind of got she she was consulted by her and uh supposedly she used that to for character or whatnot but a lot of people that i spoke with thought that they did they didn’t portray it as well in the actual script you know as her as a character as an actress i i think she does an awesome job with it you know but she’s not the one writing the script you know and i don’t i think some of the storyline it just doesn’t really drive and make sense with some things like uh she was she stopped her medication and then she got psychotic and manic and like she took her meds again and she was fine like the next day and that’s completely you know i mean you know it’s like these meds don’t just kick in like that and it’s like oh a day later i feel 100 you know so you know just things like that so but i think it’s good that they you know the consensus from everybody i’ve talked to is the same it’s you know it’s nice seeing characters in actual the you know on screen that they’re trying to portray bipolar disorder which is you know really good i haven’t met Daniel G. Garza in person but i’ve seen him virtually many times daniel has been a long time patient leader advocate and educator for hiv aids he has a very impressive resume he’s a board of director for a health center an ambassador for a number of non-profit organizations winner of the hero of hope award for patient advocacy from ipain international foundation as well as having a number of media outlets his own podcast youtube facebook live daniel has a lot going on so this is just an excerpt from our recent zoom conversation you’ll hear more from daniel in a future podcast episode he represents two patient communities those with hiv aids and anal cancer what are your feelings about how popular media has represented you know hiv aids people with hiv aids and or people with cancer and in particular you know anal cancer i think let’s let’s say aids i think aids for a long time aids was just death people just died and one of the very first movies that i ever saw about aids was a movie called it’s my party with um eric roberts uh gregory hunt griffin heinz i think it’s rare anyway he was on on gonzo anyway uh Margaret Cho in it uh uh john is in it there’s a lot of great actors in the movie and it was about how men of that time who were positive and were dying would commit suicide and right so that their families could collect the insurance com money but they would make it seem such a natural debt so that the families would like the insurance and that was one of the first movies um interesting enough my mom and i got to see that movie together when i was really sick in spanish so after i was diagnosed her and i was it was on tv in south texas in spanish and she watched it with me and that changed her view on hiv i think media also print if you open a magazine and you see a medication for hiv and aids they always pick the most beautiful buff guys and they’re out hiking looking at the sunset and it’s so pretty but it’s not always like that medications doesn’t always no um i i think we could do a lot better i think we could do a lot more i think that we need more latino we need more spanish information out there medication doesn’t medication is good for your body but it doesn’t always make you feel great and i hope people can understand that difference like it’s good for me i know my medications are good for me i know they’ve made me strong i have a strong immune system my t-cell count is undetectable i have great hair like everything’s good but it doesn’t always make you feel great there are complications even after all these years of medication there are days when you know diarrhea happens or constipations happen or your mood swings and and i think we need to talk to people about that i i think we lost a little bit of the fear that we had for HIV um back and and people got very like oh there’s a pill like i can no yes yes there is a pill but this is not a club that i want you to join just because it’s not that bad um it it is that bad it is it it affects your mood it affects your relationships um for some people it affects your your vision of your future there are still people in 2020 that i know of who have not told their families that they’re HIV positive there are people who hide their medications in aspirin bottles so that their family doesn’t know that they have HIV so no it’s it’s yes we’ve moved a lot forward in treatment and in services but we we haven’t let people catch up yet and i think that’s where we need that in media we need that representation out there um cancer man um i think anal cancer
is the butt of the joke and all this i think we don’t talk about it like we we should and i and i’m also guilty but i should i as a um anal cancer survivor i should be more aware of what i talk about and how i talk about it and what i say out there um and i don’t do it mainly because HIV has always been my main focus but it’s connected and i should be more of that and i think and please anybody watching or listening this is not bulletin belittling any other cancers but i think breast cancer has always been up front breast cancer has always been like the main cause that a lot of people go to when they when you hear cancer i think a lot of people go to breast cancer and then everything else falls behind nobody intended uh but i started a facebook page for us to me men with ostomy bags and
there’s there’s lack of communication in the group i i don’t i haven’t figured out how to get people or gentlemen to talk about it it’s very difficult to get the conversations going because um cancer affects a whole lot it doesn’t just affect your body it’s body mind and soul cancer as a gay man has affected my relationship with my partner not just emotional but physical intimacy not on his end it’s all me because i i put barriers and i set up walls uh because i haven’t had a chance to sit down with other to be very specific to with other gay anal cancer survivors and go how does this affect you with your relationship how does it affect you sexually uh how do you see your body now my last guest for this episode is Ania Flatau who you may remember from the last podcast episode about dance Ania lives in southern california is an avid dancer and was born with spina bifida have you seen you know growing up or now as an adult any images of people with spina bifida they you know had an impact on you positive or negative oof um you know not really like i mentioned like in the the spinal in spinal disability spinal cord injury world i’m growing up i saw a lot of images and and like there’s even a show on tv called push girls oh yeah like all of the representation i saw growing up was people with um spinal cord injuries and um you know i grew up thinking that it was because people like people who are in the mainstream society kind of look at spinal cord injuries as like for lack of a better term sexier than spina bifida so like their stories like they they relate more to the stories of people who’ve gone through trauma than they do you know somebody who’s going to talk to you about like a neural tube defect you know and i was born with blah blah blah blah that’s how i grow up grew up thinking and um i never really saw a lot of images of like influencers with spina bifida and that’s why i feel like it’s so important for like when people with spina bifida have like their conferences and their get-togethers for people with spina bifida that they realize that like even if you’re like not an influencer and you’re not famous because you lived your life with spina bifida and you you work and you you you live your life and and do it to the best of your ability you are an influencer you don’t have to be on tv to be an influencer as long as you’re living a life and and doing something that someone behind behind the lens is looking at and going like i want to do that you are an influencer and you are making an impact um in somebody’s life i’ll give you a quick story so when i graduated from college right um i brought my friend with me who has cerebral palsy and he was struggling with the thought like do i go to school do i not go to school just the fact that he saw me graduate and that i had my diploma in my hand was enough for him to go i’m going i’m going to college like this is what i’m going gonna do and that’s what i mean like you never know who’s looking and you never know who’s like watching every step that you make and is drawing inspiration from what you do yeah i think that like you really don’t have to have that i’m famous label to be of influence every single one of us has that ability that’s my answer to that question um i think that like even though we’re not on tv it’s okay because there will be somebody in your immediate community that is going to make you go that is freaking cool i want to do that you know like you know like well okay i lied there is aaron fathering him aaron fatheringham has spina bifida and you know he’s competed in nitro circus and he’s definitely made a name for himself so he definitely is i haven’t heard of him what does he do no he doesn’t he’s a i mean i’ll google it but yeah he does um it’s i can’t remember the specific name for it but basically it’s like wheelchair skateboarding so if you if you look up nitro circus it’s this massive um like extreme sports um i don’t even know like competition like they have biking and and skateboarding and like they do all these massive tricks and he’s one of those people that like like he was the first person in a wheelchair to do a backflip on a massive like really massive skate skate ramp wow so yeah he is definitely one of those one of those people who is like you know he’s made a name for himself and and you know you throw his name out there and you have spina bifida like 90 90 of us are gonna know who he is um yeah that guy’s crazy but um i mean i would never do it but i definitely see him and i go okay he’s he’s living his best life so why can’t i you know what i mean like whatever that whatever that definition is for you just live your best life is like i think that that’s the point of being an influencer is like seeing somebody killing it and you being like i can do that too you know well i think i can say that none of us seem to be thrilled with how we’re represented in popular media about a week ago i was on a community we go health zoom call and a woman on the autism spectrum urged all of us on the call to boycott a movie i wasn’t familiar with this so i googled it and the movie is called music and sia the musical performer is the director apparently many in the autism community find the yet to be released film offensive it includes spirit stereotypes and they’re upset that the character is played by an actress who is neurotypical of course i can’t comment on any of this since i know few facts but i invite any filmmaker or writer to include a character with my atonic dystrophy in their next creative work and i won’t mind you know if elizabeth moss amanda pete or kate planned [ __ ] play her or me
thank you for listening to glass half full leslie invites you to leave a rating and review on iTunes this helps spread the word to others dealing with chronic health issues for show notes updates and more visit the website glass half full dot online class half full dot online
If Emma Goldman were alive and experimenting with the virtual life, she may have said something like this. Why not dance through the pandemic? It’s good physical exercise, ignites oxytocin, and can bond you with a community.
Yagmur Halezeroglu and Tess Hanson from Dance for All Bodies (above) and Ania Flatau from Wheelchair Dancers Organization
Several accessible dance organizations have brought their talents online and thus expanded their reach nationally and internationally. One organization, Dance for All Bodies, co-founded by two recent UC-Berkeley grads — Yagmur Halezeroglu and Tess Hanson — feature a variety of professional dance instructors teaching accessible dance in a variety of styles from salsa to urban jazz and even chair tap.
Another group, Wheelchair Dancers Organization, pairs wheelers with walkers, and offers online classes in Island Fusion, Hip Hop, Latin Jazz, and Bollywood. One of their wheeler instructors, Ania Flatau, also offers dance classes on YouTube Live through her Facebook group, Cat Daddy’s n Krew Virtual Fitness with Ania.
Loose Transcription
Hello…in this podcast episode I’m sharing more of my pandemic experience with you. A couple of months ago I interviewed two people affiliated with BORP – Bay Area Outreach for Recreational Programs. BORP is an amazing organization that has really stepped it up during this bleak 2020 by providing online classes.
But BORP is not the only group helping us cope physically and emotionally. Today you’ll learn about two other nonprofit organizations — Dance for all Bodies and the Wheelchair Dancers Organization.
My first guests are Yagmur Halezeroglu and Tess Hanson. They are the co-founders and directors of Dance for All Bodies which you’ll hear them speak about as the acronym – D FAB.
I found out about this online dance program through dance friends I met at Rumba with Tina which I attend on Saturday mornings. D FAB is relatively new and features a variety of professional dance instructors teaching accessible dance in a variety of styles – salsa, Flamenco, Brazilian, Hip Hop, Contemporary Ballet, Urban Jazz, Diaspora, and Chair Tap.
It’s fun, it’s educational, and it’s a good work out.
I asked Yagmur and Tess how they met.
Tess
“…we went to UC Berkeley” – applied for same job – Cal Performances. Ushers, assistant managers. Met fall semester. Yagmur had a lime green backpack. Realized we both loved dance.
Yagmur
DfAB started a one-time dance class I organized at hospital. Amputee community. Amputee support groups. There is a gap the way we view dance. Taking action and making change support what you believe in. Tess and I put this idea together. Big Ideas competition. How can we scale this class? Worked with AXIS dance company in Oakland. I ask about her work with the blind. Tess talks about the beginning. One of her brothers is autistic; James is a part of my life.
Now that both Yagmur and Tess have graduated, I was curious to know how they envision the future of D FAB.
Yagmur
We’ll just take It wherever it goes. Tess naively thought we’d need a year to get it sorted out. So many ups and downs. It feels like a good, worthy work in progress. They met at BORP at Ed Roberts. Once the pandemic hit, our lives just changed. Let’s try online…how did you find dance instructors? Judith Smith helped find instructors. Stephanie, Janpi – through word of mouth. Dancers with disabilities. We want to connect these dancers with experience choreographing.
Yagmur
Looking for partners and sponsorships. Challenges we’re facing. Initial award. Crowdfunding campaign in late March. We don’t have a source of revenue beyond donations. We want to compensate the team. Bring our classes to new audiences. Spread beyond our little bubble. Partner with a hospital. adaptive dance in schools.
I asked Yagmur and Tess how they feel about the past year and all of their accomplishments.
Tess
Tess talks about how people feel after the class; we get lovely messages that provide the fire to keep going. Can I do this? I’m really proud of the partnership with Wheels of the world – an accessible travel organization. We had a lot of classes in rapid succession.
As you can tell these young women are quite inspiring. I had just assumed they were both dance majors but they weren’t. Yagmur studied cognitive science and hopes to pursue medical school and Tess studied environmental health and policy and is currently doing field work for a water conservation group.
You can learn more about their organization by checking the links on the Glass Half Full website.
My next guest is Ania Flatau. I met Ania earlier this year because she was one of the instructors in an Island Fusion dance class I took offered through the Wheelchair Dancers Organization – or WDO. WDO was founded in 2008 in San Diego, California by Beverly Weurding – a woman who has Limb Girdle Muscular Dystrophy. Ania’s been attending WDO classes for the last four years.
I first asked Ania about the organization.
Ania
The classes are for disabilities…we call them rollers and walkers as partners. All the classes are for all abilities, all levels. Teachers who roll, teachers who walk.
Ania
Tell me about your love of dance; what were you drawn to? My parents are from Poland. When I was in high school. I was an athlete. I thought I was a bad ass. I felt so uncomfortable; he was pulling my arm. At the end I was so uncomfortable that I wanted to figure out how to do it right. One summer I took a trip to Poland and my parents found a dance camp for wheelchair ballroom. These dancers…dancing for six hours/day; they were training for the world championship. They kicked my butt. I remember feeling challenged…that’s where my love for wheelchair ballroom started. I started to feel more and more comfortable with my body. I felt a oneness that I had never felt before. I was…a senior in high school. I got into those fields because of the wheelchair dance.
Ania
Ever since that dance camp I’ve been doing something dance related. It makes me feel like I am centered in a world. Being a person with a disability…disconnected from your body. I feel present and centered.
Ania
I teach a dance fitness program world of dance u jam. We partnered with world of dance – a massive network. The songs are urban, like hip hop. When covid hit I…how am I going to get my fitness on? I was toying with the idea of teaching virtually. I created a Facebook group. the name is cat daddy’s and krew virtual fitness with Ania. A hip hop dance move called a cat daddy looks like you’re rolling a wheelchair. I was trying to find a creative way to honor the culture where hip hop came from and have an ode to the dance…cat daddies are wheelchair users and krew is everyone else.
So there you go…I learned something about hip hop. You can find out more about Ania’s Cat Daddy and Krew on Facebook; I’ve got a link to her group in the podcast notes and her YouTube Live classes are free. Ania told me she likes the accessibility features like the captioning that are available on YouTube. If you have any questions about modifications for the dance moves, she’s more than welcome to meet with you – virtually – to suggest options.
I hope you’ve enjoyed this episode but more important, I hope you check out the dance classes available at Dance for All Bodies, Wheelchair Dancer’s Organization, and Ania’s World of Dance U Jam.
Are you ready for three days of workshops, adaptive activities, and discovering resources and services to enhance your quality of life?
Peruse the agenda, make plans for November 20-22, and register for the free Virtual Abilities Expo.
President and CEO David Korse shares the 40+ year history of the annual event in this podcast episode as well as whets our appetite with the impressive lineup of Expo activities.
There’s something for everyone — whether your interest is in disability rights, adaptive movement, or how to make your home more accessible.
Believe it or not, this episode has nothing to do with the recent U.S. election. We’re celebrating the 100th podcast episode of the Glass Half Full. But feel free to celebrate our right to vote in a democracy. All good!
Short video from the Glass Half Full YouTube Channel
If you’re a recent Glass Half Full listener, you can now peruse the archives of evergreen content that fall into these categories:
Advocacy
Alternative Healing Modalities
Autoimmune Disorders
Cancer
Cardiovascular Disease
Caregiving
Coping
Disability Rights and Accessibility
General Health
Laughter
Mental Health
Movement
Music and the Arts
Nature
Neurological Conditions
Nutrition
Relaxation
Research
Social Support
Spirituality
Technology
If you’re running out of ideas on how to cope with COVID, check out this list of 50 different ways to spend your time in a safe and sane manner. If you’re in need of online accessible exercise and relaxation opportunities, check out this page.
To learn more about Judith Nangekhe Nk, the health service worker and caregiver in Kenya, here’s a video.
Please visit the Glass Half Full store. You can buy t-shirts, mugs, stickers, and even face masks with the Glass Half Full logo.
Transcript:
Hello and welcome to the one hundredth podcast episode of The Glass Half, I’m Leslie and I can’t believe I’ve been doing this for over four and a half years. Some people might reach their one hundredth episode during the first year. I guess if you put out two episodes a week, you’d get there, you know, a little more than a year. People do, I know, five days a week. What does that mean? I don’t want to do the math, but.
You know, you get to your 100th episode when you get there and and I’m here and I’m.
You know, four and a half years ago, my intention was to take what I’ve learned over, I guess at that time it was about 19 years of being a facilitator of support groups for adults with neuromuscular disease to sort of take that experience, the knowledge, my my desire to share resources and knowledge, share my journey as a, quote, unquote, patient with others. All of that was the catalyst for.
This enterprise called Glass Half Full on the name, the term, everybody’s familiar with the term, but it hasn’t been something I thought about a lot. But probably within a few days of deciding to do a podcast, I thought of the name. I thought, well, I really do think that’s my attitude maybe when I was younger was as positive. But certainly over the years, at some point, maybe in my 30s, things shifted and I started to see life. You know, as certainly more positive looking toward, you know, how to make the best of something, the proverbial lemonade out of lemons, and that was when I was diagnosed was in my mid 30s, so. Anyhow, I I would hope that kind of perspective resonates for you, that’s why you’re tuning in now for the first time or for the hundredth time, how many of you out there have listened to all 100 episodes?
I don’t know. I don’t know how many there are if if you’ve done it.
I would love to know and your reaction is one of the. It’s one of the things that definitely can increase is communication from people who listen to the show. And, you know, I in fact, I was thinking of some of the highlights of the last four and a half years, it has been really I mean, you know, imagine you’re creating something every couple weeks, putting it out there in the world and, you know, you know several listeners. I mean, at least I do from my patient community, some friends, but. It’s been really wonderful when people contact me, you know, total strangers and they tell me they listen to the show or they’ll talk about something they learned from a previous episode, you have no idea how significant that can be to me or to someone who’s putting stuff out there and not really making money from it and doing it because they have a passion. So I invite you to to let me know. And there are many ways to contact me. I’m not cloistered in the middle of the woods. I’m fairly accessible. So I thought of three big things and, you know, impacted me over the, you know, nearly five years I’ve been doing this. Well, one was certainly hearing from people who listen to the podcast, whether it’s email or Facebook comment on the Glass Half Full webpage. But I have been to places where I met someone.
And when they hear my name, they or they hear about Glass Half Full, they, you know, tell me they listen to it and they’ll hopefully, I don’t think is sure that they didn’t like this show. But that has been really great. Another great thing has been, you know, over the years heard about different patient organizations, patient leadership groups, advocacy groups. And I met a lot of people through Those are the people living with a chronic health condition or disability who are doing their own thing, whether it’s a podcast, a blog, they’re fierce advocates and going to Washington, you know, or their state capitals. There’s just a lot of very amazing people, inspiring people interviewed several of them, too. But just about a year ago, I won trip from this group called Wego Health, and it was a free trip to Las Vegas where I was with, I guess, about 20 other patient leaders. And it was a conference that I can’t remember seeing HLTH. Ostensibly, it has some kind of meaning as an acronym, I think. But it was it was a huge conference of, you know, movers and shakers in the health, medical, technology arena. And I never would have gone to this without winning a free trip because I think it was a twenty five hundred dollars. So that that was really cool.
Never would have happened without this podcast. And another thing I don’t think I’ve ever talked about. And this is just, you know, representative of meeting people you would never meet, I had taken over a meetup group for people with chronic health conditions. This is when, you know, pre-COVID, people met in person. And I it was I think it was meant as a support group. In any case, I took it over because I wanted to reach people with other conditions, you know, outside of neuromuscular disease. And I like doing field trips to in the San Francisco Bay Area. There are just so many amazing organizations and resources. So I was doing like field trips and it was online. But the you know, ostensibly you’re you’re connecting with people who live in your region so that when you actually do meet up in person, you know, it makes sense because you live near each other. Well, it turned out there was a woman who was part of this meetup group from Nairobi, Kenya, in Africa. And her name’s Judy. And I guess we chatted a little through meetup and she told me she was in Africa. And I knew well, she’s probably not going to make it to any of our in-person meetings. And somehow I can’t even remember how one thing led to another. But I felt that she was a health services worker.
She worked with people affected by HIV and AIDS. And I’m still I don’t know if she’s a nurse, but it sounds like she does a lot of nursing and administering of materials and education, so. We tried to talk, but at that time, maybe two years ago, her cell connection was really unreliable. But I worked on a video. It’s on YouTube, I think it’s called Judy: Caregiver. I did a video for her and she really appreciated it. And just recently, she asked if I can do another one. And she was able to provide audio files so it’s in her voice. And so that it just it just dropped last week. It’s on the Glass Half Full YouTube channel and. I think it’s Judy and her last name, which I can’t pronounce, but you’ll see it there just came a week ago. Anyhow, she’s using it to raise money through different churches in the West. I assume U.S. Canada, maybe Europe to English speaking countries raising money for the work that she’s doing in Nairobi, in and out, in and around Nairobi. So those are just some examples of things that never would have happened had they not started Glass Half Full. By the way, this is not scripted. If you if you didn’t know mostly I write a script because right now we’re at 18 minutes. And if I you know, if I’d written a script, I’d probably be at 12 minutes.
Oh, maybe 10. So just thought I’d do something novel. There’s a video, a short video that’s in five minutes showing. All these different images from, you know, almost all of the 99 podcasts and it’s on the website, it’s on the YouTube channel and I have a few actual video clips in it. One is part of an interview with Susan Jermey. There was an interview I recently did. She’s a comic and playwright. Another is a clip with Mike Muir, who is the great grandson of John Muir, and it’s at his ranch. If you listen to that podcast episode about three years ago, Mike, has he was diagnosed with M.S. years ago. I think he might have been a teenager he was definitely younger. And he he has this accessible ranch, horse, ranch, and he does carriage rides. And so he uses a wheelchair and the ranch is open, you know, for adventures, for all different kinds of people, kids and adults who use wheelchairs. And it’s, you know, accessible experience. So I have a clip from that. And then I have a clip from Melissa Felsenstein, who is a sound therapist, sound meditation practitioner. She uses gongs and crystal bowls and all kinds of different instruments. And the podcast episode with her, I think was about two years ago.
Andhow, she’s she’s still doing her thing and doing it via Zoom now. So I invite you to check out that video.
And in the course of putting that together, the video, I went through the whole archive of ninety nine podcast episodes. And by the way, most of these episodes are what you call Evergreen. They are. You know, they they’re relevant now, as relevant as they were when they were published, you know, three, four years ago, some of them are tied to events that have happened in the past. But it’s always been my intention to put together, to produce an episode that has lasting value, you know, so unless There was something, you know, we talked about and it’s now been proven to be not good for you, I can’t think of anything. I think, you know what, I do focus on alternative healing modalities, but nothing that is so far-fetched that, you know, in two years, somehow it’s been found to be not good. So anyway, the point is, if you haven’t heard a lot of the episodes, go back, check them out. And now there’s a feature on the home page where you can search by category. So, you know. I didn’t know how many different categories I would have, but I went through and I identified 21 categories. OK, so I’m going to tell you the 21 categories now. So if a couple of these pique your interest and you haven’t heard episodes relevant to this theme or category, go to the home page GlassHalfFull.online I found that online and check them out. OK. Drum roll please.
Advocacy, alternative healing modalities, autoimmune disorders, cancer, cardiovascular disease. Caregiving. Coping. Disability rights and accessibility. General Health. Laughter. Mental health. Movement, Music and the arts. Nature, Neurological conditions. Nutrition, relaxation. Research, Social support. Spirituality. Technology.
There you have it, 21 different categories, now some podcast episodes, you know, cover two or three of the categories. So they would come up, you know, in a few different searches. But it’s a drop-down menu. Hopefully it’ll make it easier for people to look at the
Archives, the library of episodes. Another thing that you find that’s new on the Web site is a link to a storefront, So over the past four and a half years, I’ve given away some Glass Half Full schwag, mostly mugs. I have had some T-shirts, a couple hats. But now you can buy whatever you want. You can buy a face mask with the Glass Half Full logo on it. And this is all through a company. I won’t name them. If you go to the website, check it out. But this is one way for me to capture a little revenue and for you to help promote the podcast and the concept. Of Glass Half Full and positive psychology, positive vibes. I really appreciate if you want to get any of your holiday gifts. I mean, imagine if you got each of your family members a mask. You’d be helping them with their health and you’d be helping me and hopefully helping other people who see the mask and think Glass Half Full, I want a piece of that. So. Spread the goodwill. Well, I don’t want to make this whole episode about promoting Glass Half Full, but what can I say? It’s a hundred. It’s you know, it’s that point where you want to celebrate and also continue to grow. So, you know, I’ve seen an uptick in downloads over the past few months.
I’ve been working on some SEO, which is search engine optimization, which is not fun. But seeing results does motivate me to do more of that. And really, if you if you’re not familiar with the term, it’s just tweaking things, you know, on the website with text and keywords that will help for searches when people go to the Internet and want to search for, you know, under a health condition or just a concept, maybe it’s, you know, November and they’re, you know, thinking about gratitude and they want to learn more about gratitude so they can practice gratitude. Well, will Glass Half Full come up in that search and gratitude? I don’t know. I’m working on it. I hope so, although gratitude is one of the themes I think I have gratitude covered under spirituality, which, you know, this is all in my head, too. And it’s not like rocket science. I could have gratitude as one of the categories, but I try to be a little more open ended with the with the categories, I didn’t want to have like 100 categories. So there is also a link on the homepage for accessible exercise. And I would say that accessible exercise as a resource is also a part of this other page I put together just a couple months ago at. I spent time on this 50 ways to cope with covid, so I haven’t been promoting that; it was a special feature for some groups, but now I’ve opened up, unveiled that it’s open to the world.
If you feel like you’re running out of creative ways to save your sanity during lockdown or, you know, the cases now are surging or the COVID cases are surging. And during these winter months, it’s going to be even more important to refrain from. You know, being in other buildings, being around a lot of people, we’re just taking our time, we want to protect ourselves. I have only been in one other building and it’s nine months other my house. And that was to, you know, Kaiser Permanente, the health facility I go to for some minor stuff just one time. So anyhow, what am I saying? That’s why I used the script. So 50 ways to cope during covid. I invite you to take a look at that article and accessible exercises, part of it, but so are a lot of other things. I am also doing covid had two speaking engagements, of course, via Zoom Virtual, but I wanted to share them with you. They’re listed on in the podcast notes for the 100th episode. So one is a presentation I did on nutrition and maintaining immunity during covid and that was for a Muscular Dystrophy Canada organization.
But it’s, you know, a YouTube video so anybody can watch it. And the other one, I’m very delighted to say, is that I was the keynote speaker at the Utah Program for Inherited Neuromuscular Disorders Family Conference, and that was just about, I think, three weeks ago. And then also on YouTube and I spoke about making social connections and talked a little about my background and what led me to become now a master of social connections. But certainly I’m as I would say, Malcolm Gladwell would say, I’m kind of a connector. At the end of that, toward the end of that presentation, it’s really focused on Zoom related connections and communities that I’ve become a part of. You know, during COVID that I wasn’t pre COVID, so I have talked for 24 minutes pretty much non-stop, can’t believe I did it and I only, I think, sipped water twice. I don’t know, maybe I should dispense with scripts altogether? Let me know what you think. How does this compare to my scripted ones? So thank you for being a part of this Glass Half Full ride. I hope you continue listening. I’m working on some very interesting episodes that several of them will happen before the end of the year and some won’t reach completion until early next year.
But, you know, keep tuning in and take care of yourself and celebrate!
People with anxiety, autism, blindness or low vision, deaf and hard of hearing, mobility challenges, chemical sensitivities, or PTSD may face unique challenges visiting a dental office. Now with the additional barrier — the COVID-19 pandemic — many people are postponing or cancelling routine dental appointments.
Dr. Helena Caballero, a dentist in Northern California, discusses oral health and hygiene, how COVID-19 has changed dentistry, and modifications for people with disabilities.
For additional information, you can download Creating Disability Friendly Dental Practices from The Independence Center. For those with Parkinson’s Disease, additional information is provided to maintain dental health. For those with neurological disorders, there is an article, “Dental Visits Made Easier” offering helpful tips.
Here is an article that discusses the little dental coverage that Medicare offers.
That is me; I still have my hands, says the 4-year old girl after waking up in the hospital and being told by her mother that she had lost her legs. The little girl grew up to become Rumba with Tina. Tina Verduzco teaches a Saturday morning online dance class for BORP: Bay Area Outreach & Recreation Program.
Tina Verduzco, Cynthia Noonan & Freckle, Younger Tina
Tina, along with several other online instructors, help this podcaster maintain positive energy and a healthy mind, body, and spirit during the shelter-in-place period.
Cynthia Noonan, one of BORP’s Board of Directors, transitioned the in-person fitness studio in Berkeley, California to the virtual world where participants join in from across the United States and Mexico.
