hi im velvet crayon. IAmA 33 yr old one manned band, sideshow/burlesque/cabaret performer, and cripple born with osteogenesis imperfecta (aka brittle bones)

What's your beef with Bruce Willis? Leave the man alone already! /s

Good luck to you, hope you make it big.

psh, more like what's his beef with me?! ;) thanks!

Did they call you Mister Glass?

nope, people call me crayon.. british people call me velvet.. it makes me smile

music builds as Bruce Willis backs away, and walks out the hallway

“I should have known, way back when. You know why, David!?”

camera zooms away, as Bruce Willis keeps walking away

“Because of the kids ...”

zoom out, and he’s alone again. And whispers

“They called me Mr. Glass”

no.. they call me velvet, if they're british. crayon if they're not.. cran if they're my friend tommy.

Sorry, I had to. It’s one of my favorite movies.

My friend had some form of mild hormone based dwarfism. HGH and steroids fixed it. But, even though we didn’t go to the same schools ... and I grew up in a small and friendly school ...

He grew up in a giant school, and kids were monsters to anyone that doesn’t fit in correctly. It’s insane the human behavior that is built in to each of us, and drives us to want to punish people to conform and/or push them out of the group.

Sorry, this is way off topic. That’s why I love the movie, though. Human nature made him a monster.

to me, those horrible horrible people are freaking hilarious. i mean really, like, cartoon villain type funny shit man

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i do remember this night and you both a little bit, sorry, they were hazy times back then. did the guy who was punched in the stomach have reaaally short arms? was it at coney island?

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cool :) well nice meeting you again!!! feel free to keep in touch if you want and if you find yourself in nyc and looking to go to a show, let me know!

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hmmm i don't remember the cake

It's been a while since you dressed up in the cake costume, to be fair.

i've dressed up in a lot of silly costumes and clothes in my day but i don't think i've ever dressed up as a cake.. hmm.. future act idea? who knows. damnit, now i want cake.

I see some fancy looking glassware on your table there. Is it for pain relief, or just recreational? Checking out your music right now

both ;) i totally didn't realize that was in the photo until after i posted it, but alas, #420blessed haha

I love that these days we don't have to worry about that.

Unless the federal government jumps in, not likely

it should just be legal. doesn't make any sense why it's not.

I'm for legalization but it makes perfect sense why it's not. You just have to look at it from the perspective of the owners of for-profit prisons and racists and it all seems clear.

true. but look at colorado and their tax surplus they have from that sweet sweet green.. i'm talking about weed.. not money. where's that canadian guy / CanadianBeaverluvr with the doobe-tubes when ya need him

Piggybacking to ask: Favorite strain?

i'm not that technical, sorry, i don't know strains and stuff.. i know i like indica more than sativa but that's about it

u/velvetcrayon Your music has this mysterious and Intriguing quality about it. It vibes for sure. What made you want to start making music?

i think i always wanted to make music. when i was a kid my grandparents had an organ and my grandmother played it. so whenever we were over their house i'd play their organ. and then she taught me basic piano/keyboards. i always loved music, it was one of my favourite things as long as i can remember. my dad loved the beatles and zeppelin and cat stevens, awesome 60s/70s rock, and he'd teach me the words to all these epic songs. there's a recording of me somewhere as a 4 or 5 year old singing love potion number 9 and i think it's totally the rosetta stone of velvet crayon music.

i took lots of music classes in high school and then after high school i went to college for a year then dropped out and bought a guitar and taught myself to play it and then recorded the first velvet crayon album and that was like, 2004/2005

Discovered your music last year and been enjoying it a lot since - just wondered who your main influences would be? Think I heard a lot of Velvet Underground on tracks like New York City...

glad you dig it!! definitely a lot of velvet underground. my biggest influences are probably the kinks, neil young, will oldham / bonnie prince billy / palace music (he totally changed how i thought about writing songs), sparklehorse, of course black sabbath. new york city is still one of my favourite songs to play live

Started with the Kinks, ended with Black Sabbath 🤘 gunna go give your stuff a listen now

awesome! hope you enjoy!

Cool, nice mix of vibes going on there - any chance of a Sabbath-esque doom album?

without a doubt yes.. maybe 2019? at least a 4-6 song ep

Mom of a young type III here; does the pain from breaks lessen over time or do you just become mentally stronger? How different do you think your career would be if you didn't have OI and do you think you have had more success by embracing your disability?

sorry to say that the pain doesn't lessen, it hasn't for me at least but i think you definitely become mentally stronger. as a kid i would break a bone and it felt like my whole life was destroyed, that it'd always be that feeling forever but as you get older, as with everything as you get older, that feeling subsides and you focus on those bad times less.

if i didn't have OI i don't know that i'd have this career honestly, my life would have been completely different than what it is now. i would probably have bought a boat as a teenage and sailed away or something, who knows.

and i don't know if i have had more success embracing my disability but it sure has made life easier and way more fun. i've had some amazing adventures in life that i wouldn't have had if i wasn't born with OI and didn't embrace being a cripple the way i did.

i will say that after puberty, at least for me, the breaking of bones became less frequent but that's definitely contributed to my parents letting me be a kid and do stupid things and i'd get hurt doing really dumb things but it made me learn my body's limits and how far i can push it.

Hey man- two quick questions: Have you broken a lot of bones? Is there anything that you can do with prosthetics to help improve your mobility? I don't know anything about your disability, so please forgive me for my ignorance.

i have broken a bunch of bones, somewhere around 60? maybe? i totally always guess at this because i don't really remember to be honest. i broke a lot of bones as a kid, it's slowed down since puberty finished but yeah, it's been a bit of breaking haha but honestly my broken bones number is less than most people with my type of brittle bones. i have always tried to stay somewhat in shape and keep my muscles working and during puberty through my early twenties i was in the best shape of my life so that helped a lot to make my bones stronger

no worries, i said ask anything! and nope, not really. my bones just can't support my weight to walk, so, i use a wheelchair as my main mobility route. a hover wheelchair would be awesome, like one that floats like a 6-12 inches off of the ground, that'd be freaking sweet

Where do we donate towards your hover wheelchair?

i don't really have a "donation" place but you can purchase some of my music at velvetcrayon.bandcamp.com. the three newer albums are $10 each, but hey, if you or anyone is feeling generous, it's set at "pay what you want" so you can pay more than $10 ;)

but really, we should have hover chairs soon i would think.. drone technology is advancing rapidly!

What kind of things do you do to try to stay in shape? I imagine it must be challenging knowing you have to be quite careful. Thanks for doing this!

eh, i'm not thaaat careful, honestly. i know my body just as you probably know yours and how far you can take yours before it quits on you.

i'm out of shape. but i should just push more, just get out and do things more. but i'm on my january vacation month so i'm on the couch being lazy. but yeah i should push around more. i should be more active. maybe this spring! i'm going to try to hold myself to this.. this spring! exercise more!

Hi Erik! How did you get involved with the sideshow circus?

hi! well i was in college and i had been performing as my one manned band and i also hung out in a bar pretty regularly (bob and barbara's in philly, cheers!) and another regular of the bar was producing a music video and asked me to be in the video as an actor. that led me to meet some burlesque people in philly and then i was at a burlesque show one night and i met a clown (jelly boy the clown to be exact) and we drank all night long and chatted. he and his brother have a troupe in philly called the squidling brothers sideshow circus and they do a show in philly called carnivolution (which i had been to a ton in college). i think he had heard of my music before and we were chatting all night and he asked if i wanted to be the opening band to their next carnivolution, i said of course. the next day he told me if i came up with a character for carnivolution (it's a play, a sideshow play) then i could be in that as well, so i did. and i've been in every show since. jelly and i have traveled/toured the world together. it's pretty awesome

Ayyy Bob and Barbara's is the shit!

completely agree.. i miss bingo there though

carnivolution.

stole this off a signpost in philly because i recognized madeleine and terry lol.

nice! our friend thomas kastrati made that poster and makes a ton of our posters and flyers! his stuff is freaking awesome

Hey it's your buddy Gerard from STARWOOD. It was good seeing you 2 weeks ago. What's your favorite Tame Impala song?

hey! you guys fucking rocked the other night! loved it!!

i'm not sure which song is my favourite honestly, my wife and i own this live tame impala album which i absolutely love but i never pay attention to the song titles, i just listen to the whole thing. so i say, that album counted as one song haha

Awwww thanks Mr. Crayon! I love that album too! Here are all the tracks they had to cut that would not fit on the vinyl. Hope to see you soon. https://www.youtube.com/watch?v=wXaLvLd8wJI

epic! i can't wait to listen to that!

Your instagram profile says “one man band,” which is how I’ve always heard it. But in this thread you’ve written “one manned band” a few times. So, which is it? And why can’t you commit?

i have no idea which it is, i've always wondered myself. words are fickle, you know? they change all the time. sometimes i think of velvet crayon as this vessel, a ship if you will, that i control so it's like a one manned vessel, a one manned band? but it's also a one man band. it's both! :)

Are you familiar with Michel Petrucciani?

He had the same condition and was one of the greatest jazz pianists of all time.

i am familiar with him. i watched a documentary about him years ago. apparently his manager used to carry him around in a suitcase so they could save money on plane tickets! haha

He was an interesting but tortured guy. Playing caused him a lot of pain but his love for music overrode the pain.

His music was jaw-dropping. Probably my favorite pianist ever.

Good luck with your career!

thanks! yeah our joints can get really bad over time.. but you have to do what you love!

So do they, "Call [you] Mr. Glass?"

nope but that is supposed to be the same disability i have.. but it's not.. not really. i'm not that brittle but am also more brittle than that? it's confusing haha i haven't seen that movie in a long long time. wasn't it a comic as well? hmm

Lol, thanks for answering! I actually love that movie but know nothing about it except that it's the only one of the director's works that I've enjoyed. M. Night Shama-something, I think.

More an Aronofsky and Kaufmann fan, myself.

Whom do you enjoy?

i'll be honest, i don't know a ton of directors? i love movies though. all kinds. i'm just bad with director names. i've been watching more tv than movies recently though. my wife and i just finished BoJack Horseman

How did you get married?

my wife and i are not legally married because i'd lose my health insurance and such, but we are married. we had a dear friend of ours marry us. it was a small wedding.

I'd lose health insurance

Ridiculous. It shouldn't have to be this way. :( But these days you don't "need" to be legally married in society's eyes anyway.

yep it's ridiculous!

Being married by dear friend actually sounds really great!

it was!

I know I'm late.... and this is personal/private BUT it's an ask me ANYTHING so..... How does sex work? Have you broken any bones during it? Do you have to be careful or can you go nuts?

i don't really have to explain how sex works.. do i? i'm going to ignore that part and assume you know how sex actually works.

i have sex like people have sex.. honestly. i don't have to "be careful" i just have to do what my body can do? so compared to what your body can do it may be considered "be careful" but to me it's just living?

i have never broken a bone during sex, nope.

hehe you said nuts in a question about sex ;) that's how reddit works right? did i reddit?!? yes!

Hey velvet crayon, My name is Will, I live in Portland, Oregon. I have type three OI, with 82 fractures under my belt. I am also a musician, who has about 9 years of performances under my belt. I have never really left my town to persue music in other places but I would love to. Do you have any advice?

hi will! advice? just do it! cause why not? trump has his finger on the button, time is now!

honestly, reddit is a great resource to book shows, i've booked a tour that way before. do you have your music online? that's a good start if you don't. but yeah, do it, play tunes, have fun! portland rules, i've heard, i've never been but i should, soon. right? right.

You’re right! If you ever do come to poertland, maybe we can perform together!

maybe so! link me to your stuff if you have stuff online

Is that the same thing the adorable kid Alec from the children's hospital commercials has?

i think so but i don't know 100% but it looks like it. it's a great hospital, chop, it's where i go as an adult even!

I’ve worked some with Mat Fraser, another disabled burlesque performer and he was wonderful.

What about these types of performances are different to you than how the public perceives them? For example, do you find any of it empowering rather than objectifying, etc.?

nice! mat and i actually have a band together called The Spazms. he plays drums in it. he is wonderful!

i honestly see burlesque, good burlesque, as performance art. yeah there's some aspect of stripping and sexuality but there doesn't have to be. i've seen some amazing acts that didn't involve either of those things. it's not about turning your sexy-bits on, it's about turning your brain on, making you think, or just pure entertainment.

definitely when i do burlesque there's a bit of a shock factor. people don't expect it. and that's fun. hell, i'm probably the first naked cripple some people have ever seen.

i do think it's empowering just because i think art in general is empowering. i try not to separate my burlesque art from my music too much, it's all connected. it's all art

I've worked with Mat and Velvet Crayon at the same show!

Mat is one hell of an mc, and was fantastic to work with, as are the squidlings - it's a show I look forward too every year!

thank you kind sir

So are you like Joker from Mass Effect?

i have no idea who that is, sorry, never got into mass effect. what makes you think i may be like him? what's he like?

In the game he's one of the best (if not the best) spaceship pilots in the Galaxy, and he also has a brittle bone disease. He might break a leg standing up too quickly, or a rib if he sneezes too hard. Great voice acting, and one of the most personable, relatable characters in the game. He's voiced by Seth Green, the guy who played Dr Evils kid in Austin Powers, is the driving force behind Robot Chicken, etc. Adds his own flair to the character.

In other news, those games are great and you should play them.

he sounds pretty rad. but i google image searched him and he looks hella tall.. why can't they just be honest and say people with brittle bones are short? it's something i'll never understand.

but, there's so many buttons. i'm not that good beyond run and jump and throw a shell.

What's the funniest insult that you've heard about your disability?

hmmmm.. when i was a kid a girl told me she didn't like me because she couldn't see my butt? which was a valid point. but hmm, let me think, about my disability.. maybe that my dick is probably brittle? but it's not.. because it's not a bone.. and my disability only effects bones, not organs. so yeah, that's always funny to me

Then why's it called a BONEr??

your answer can be found here

What games do you like to play on SNES?

currently i'm addicted to The Legend of Zelda / Link to the Past. but i love myself some Super Mario World. i wish i were as good as GrandPooBear or something but alas, i suck haha but it's fun!

You were born with glass bones and paper skin. Every morning do you break your legs, and every afternoon do you break your arms? At night, do you lie awake in agony until your heart attacks puts you to sleep?

what's this in reference to? i feel like you're referencing something that i don't know.. mass effect? unbreakable? some weird obscure caillou episode where caillou tries to stop being an annoying fuckface? damn i hate that caillou.

Whats been the toughest thing for you in your career?

stairs.

but seriously.. stairs. stairs suck. they annoy me. more ramps, less stairs.

but other than that.. hmm.. learning to say no to shows. it's really hard. i'm a pretty nice person i think, and for a while i said yes to every show i was asked to be in but i've had to learn to say no, not because i get a billion offers, oh woe is me type stuff, but saying no to myself, that i shouldn't do every show i possibly can.. saying no means i have time to rest, and sleep, and hang out with my wife.

this past year i said no a ton so that i could record 3 albums, and i wouldn't have had time to record them if i did every show i possibly could.

stairs are literally our mortal enemy. and STEPS

agreed. hoverchairs are the future!

Hey, thanks for doing this AMA! I will admit that I'd never listened to your music before today, but it has really interesting layers of sounds. I dig it!

As the (adult) child of a person with disabilities, I was always intrigued by how my grandparents raised my mom to never be "less than". I feel that her outlook and ability to do everything that she does, was influenced by that "you can do it" attitude. How were your parents when you were growing up, and do you think that it helped you become the showman that you are today?

thanks for taking part in the ama! glad you dig the tunes!

i think yeah, it totally did. but it's complicated, parents are complicated you know? but for the most part, yeah, my parents treated me just like any other kid i think they definitely made sure i knew that being a cripple couldn't stop me from doing what i wanted.

i think a lot of the way i am is because my mom got me involved with wheelchair sports usa when i was really really young and it got me around other people that used wheelchairs. i grew up around other crips and that definitely shaped me into the man i am.

but it wasn't some sort of, "i know you're crippled but you can do anything" inspiration porn type stuff.. it was just like, hey you're a human, do your thing. does that make sense?

Yeah, definitely! Even though she was also born as she is, my mom's disabilities are different (she was a thalidomide baby) but I think that since it was a bit more rare back in the day they just kinda.. Let her assume that she could do whatever rather than rushing to help her all the time, you know? Exactly like you said, just.. Be a human, do your thing. :)

I think it's so cool that you're taking the time to answer everyone. Between that and your music, you've gained a fan today!

awesome! honestly, this has been pretty fun. i do this as a sideshow act pretty often but it's usually only for like 5-10 minutes and doesn't get to have as much depth as this has had.

thalidomide is pretty psychedelic.. my friend mat fraser has that

Yeah, it's wild!

Man I'm really, really digging your sound. With 3 albums out last year how do you find time to tour and everything else?

well i took a break from touring a bit last year so that i could record those albums. and i don't know honestly, i took this current january off from productive/workness which has been nice.. sleeping rules.

Sleeping is the BEST.

I'm so excited to show your stuff off to my friends! Do you ever come to south Florida? If you don't, you should consider it! :D

i came to florida once. i was drunk the whole time and barely remember it. it was great. maybe someday i'll come back but thinking about it makes me feel hungover all over again ;)

p.s. you'll have to let me know which your favourite album is!

Not sure if anyone has asked, but... I was kinda surprised you used the word cripple to describe yourself. Isn't that a negative word?

it's one of those words that i can say because i am one but for someone else to say it could be negative but to me it's a good word. a powerful word. because it makes non cripples a bit anxious/uncomfortable. it's like "mutant and proud" type stuff.. does that make sense?

I live in Philly, where can I go to see you perform?

february 13th at bob and barbara's! that's my next show i believe. i'm still figuring out my booking/show schedule for 2018 but keep an eye on (velvetcrayon.com)[http://www.velvetcrayon.com] for show dates! but yeah, february 13th is currently my next philly show!

Have you ever tried to kill Bruce Willis?

nope, not that i know of

If your house was burning down and you had time to save one guitar pedal, which would you choose?

i have this awesome custom pedal called Grey Stache by Fuzzrocious, and it fucking rules. i'd probably save that because it's custom and i love it

How are your teeth? Most people with this disorder have the development of their teeth affected as well which need extensive dental restorative care.

yep, i have brittle teeth as well. most of them have broken off honestly. i don't know that everyone with brittle bones has brittle teeth though? i remember being told it was called something like DenoGenesis but i googled that and couldn't find anything.. also, googling your own disability is weird. i don't do it, and if i do, i don't read in detail. shits scary.

It’s called dentinogenesis imperfecta! There’s a few different types, but type I is associated with OI.

ah cool! i was so close with the spelling! but yeah, i have that. my teeth were like seethrough as a kid. i'll see if i can find a photo! but don't count on it because i'm not sure i have any photos of my teeth from when i was a kid haha

not everyone with OI has brittle teeth! wikipedia says ''More than 1 in 2 people with OI also have dentinogenesis imperfecta (DI)'' so it is a majority, but definitely not most.

hmm, i don't know how much you can trust wiki though, i used to edit them with random bullshit all the time when i was in college. but you're probably right.. i just wanted to say that i used to write bullshit on wiki :)

How did you get into this as a job/profession?

well i've always been telling jokes and playing music and then in college i had been performing as my one manned band for a few years and i also hung out in a bar pretty regularly (bob and barbara's in philly, cheers!) and another regular of the bar was producing a music video and asked me to be in the video as an actor. that led me to meet some burlesque people in philly and then i was at a burlesque show one night and i met a clown (jelly boy the clown to be exact) and we drank all night long and chatted. he and his brother have a troupe in philly called the squidling brothers sideshow circus and they do a show in philly called carnivolution (which i had been to a ton in college). i think he had heard of my music before and we were chatting all night and he asked if i wanted to be the opening band to their next carnivolution, i said of course. the next day he told me if i came up with a character for carnivolution (it's a play, a sideshow play) then i could be in that as well, so i did. and i've been in every show since. jelly and i have traveled/toured the world together. it's pretty awesome. it's actually the most artistic freedom i've ever had. i can do whatever i want in the show! it rules!

My nephew has OI. (Type I, 68 breaks, 10 yo) He wants to be a professional drummer or comic book artists! Any advice as to overcoming this obstacle?

that's so awesome! he can totally do all of those things! they are obtainable goals. is he taking drum lessons? he should! do it. i say do it all.

hmm, advice, just keep swimming? nemo man, he said yes to everything and he fucking believed in himself.. he was like "well of course i can swim, i'm a fucking fish", you know? so of course he can be a drummer and a comic book artist, because they're things humans do :)

Yes! He just has so much in his way. I mean, he just broke both femurs rolling over in bed.

But, my goodness, I’ve never had someone inspire me like him. He’s generally happy, good natured, and positive. This is a kid who asked if Spider-Man has broken bones.

He’s a trooper, always positive, always working. He’d love to see your response (explosives kindly deleted, of course!), but if you have a motto, a phrase, a guiding meditation - I think all of us in the fam would appreciate it!

honestly, my words of wisdom / motto / phrase whatever would be don't let him be your inspiration, be his. he's just a kid. just a human child. he's not some alien learning the ways of ablebodied world and "overcoming", he's a kid, just living. trying to figure out what that means. don't aww at him for doing a mundane task, he doesn't want that. he wants to be treated like he didn't have brittle bones, like every other human.

the bones will break less as he gets older and stops growing and learns how far he can push your body. most people break more bones as a kid than they do as an adult, it's just how learning about your body works.. we feel it a bit more than others is all. so don't worry about the two broken femurs thing, it happens. that's not all his life is. don't focus on the broken parts, they're the boring parts.

just love him and treat him like you would someone who doesn't have brittle bones.. you know, like a human, cause that's what he is.

sorry if this came off harsh or strong or anything but the inspiration porn type stuff is just so damaging for crips and i get why it happens but it doesn't need to

p.s. i believe that spiderman has totally broken his arm before, can i get some marvel nerd up in here to help me cite this? ;) also, xmen are cripples, whaaaaaaa. #magnetoWasRight

If you had a time machine that could only go backwards through history, who and where would you visit?

honestly, not to be too heavy, but i'd go back to the last time i talked with my dad and just do that differently. but maybe i wouldn't? time machines are scary! does this one fuck with the future or does everything stay the same if i go back, i just remember the experience but they don't remember me being there?

I like your Sherlock piece. How do you feel about our current governments desire to crack down on the states where voters have chosen to have that freedom?

the current american government is horrible. they're the worst. ugh, sorry, i can't. any day now he's going to order the buses to come round up all the crips and put us in a camp.. that's what this government feels like. blah. i gotta smoke ;)

Have you ever collaborated with other one man bands like Keller Williams, Xavier Rudd, or That One Guy?

i have not, i should look into it yeah?

actually, that's sort of a lie, there's a one man band out of the czech republic / france / let's just say out of europe, his name is Koonda Holaa. i've played with him. he rocks.

i have played in other bands though and been in other bands, even while i've had velvet crayon.

I’ve seen Keller a bunch of times. He plays several instruments and loops them w pedals to sound like a whole band. He plays with the String Cheese Incident a lot.

Xavier Rudd does pretty much the same, but he’s Australian so he adds dijeridoos to the mix for a very unique sound.

I’ve only seen That One Guy once (opening for Keller in Deep Ellum) but he was pretty cool. Created his own instrument called the Magic Pipe.

nice, i'll have to check them out. one thing that gets me with a lot of one man bands is how long they take to build a song before they sing. i think you can build it while you sing. i use loops but not always, i have a lot of things i trigger live and stuff

Do you have h same condition as Mr. Glass in the Unbreakable movie?

yep, i indeed do. but it's nothing really like it is in the film

I dig the Song you did for NPR. I imagine getting the looped parts to be seamless despite not being able to step on the pedal was a learning curve for sure. Much respect. What are you using for your looper? I have a Boss loop station but am thinking of going with the the TC ditto. Thoughts? What are your favorite effects in general? I love modulation.

thanks! but i can use my feet for pedals and i think i did during that song. sometimes i use my hands, sometimes my feet. i just can't put much pressure/weight on my legs/feet but i can use them for guitar pedals.

i currently use the boss rc-3 loop station and i love it, it's in stereo (which is great to send one input/output to a guitar amp and the other be like a keyboard to a pa) and it has usb input/output so you can put files on it on the computer which rules. i love it.

i don't know the tc ditto, but i just googled it and eh, it's okay. it can't save loops which i don't like. but if you don't need to save them, i'd say get the green line 6 pedal, that thing is so good

actually on my instagram i've started doing a guitar pedal monday thing where i talk about my favourite gear. it's not always on monday and it's not always every week but i'm working on it haha.

but i love fuzz pedals. besides a fuzz, one of my favourite pedals is the boss pitch shifter, i have the boss ps5 and i love it. it's amazing. definitely crucial to my sound.

I'm a research fellow at the National Institutes of Health currently working in both a clinical and translational research lab with focus on OI and other related bone dysplasias. If you don't mind me asking, what type of OI do you have? Also, are you receiving any type of treatment such as bisphosphonates, TGFb, or other experimental therapies?

I'm from Philly as well, would love to see your show live. Long live the jawn.

i have the middle type, sorry i don't know the exact type, i never really got the test done to find out which exact one.

i am not currently on any treatments besides cannabis.

i was part of a study at johns hopkins when i was a teenager where they tried one a drug called pamigerate (totally spelling that wrong) but it was supposed to increase my bone density but it didn't work, it had no effect on me except that it made me trip like i was on acid for 3 days the first time i had the treatment.. that was fun.

but nope, no more drug trials for me. i think some good exercise and muscle growth is the best for healthy strong bones.

cheers to philly! february 13th at bob and barbara's is my next show! and keep an eye on velvetcrayon.com for my show schedule! cheers!

Hi! Piss on me, please??

that sounds messy

Hoping to go do a PhD studying the fatigue mechanics of bones with osteogenesis! Have you noticed the condition worsening over time? I don't now much about it yet

hi! cool! i haven't really noticed it getting worse. and by it i mean the strength of my bones. general pain and such has but i think i'm just getting older and that's what happens. i think it can get worse for people as they age because they become less active and less activeness leads to less muscle growth and also less bone strength. i'm not a doctor or anything but just speaking from experience ya know. i think puberty was the freaking worst and not just because of the weird puberty stuff but my bones were growing too fast i think and it made them weaker/thinner/less dense. but now they seem to be pretty good

can you have sex?

yes but only with their consent as should you and everyone.

How big is your dick?

a friend once said "like a babies arm holding an apple"

but if you come out to a squidling brothers show or when i'm at the slipper room, you'll probably get to see it for yourself.. if you're over 18.. and if you're not.. then.. you shouldn't be asking me this.

What's it like traveling with a side show circus? Any interesting stories from other countries?

it's so fun, a lot of tiring work, but so fun. i travel with some of my best friends. hmm, interesting stories.. well.. there's been a lot of drinking on some of those adventures so i don't remember all of them. but here's a couple: - when we performed in japan, we performed on a boxing ring surrounded by the audience (the ropes were taken down). it was such a cool experience. here's a couple videos from there ukulele song and my burlesque NSFW

-once in germany i went to an anti-trump dance party and pissed on trumps face that was taped into the urinals.. that was fun

-in utah, my friends helped me sit on top of a rock arch and we smoked a joint

-recently we went to canada and met some of the coolest canadians ever and they said things like "dube-tubes" and it was fun

it's more about the people than the places really. the places are cool, don't get me wrong, berlin is one of my favourite places in the world but mostly because of the people there.

and traveling with a sideshow circus is so fun, i literally can do whatever i want on stage. so much freedom in the art.

Yankees don't say Dube tubes????

nope! it's fucking lame dude! i miss canada, they said things like "squeeze" instead of merge. and, at least the canadians i met, were really nice and fun and awesome stoners

Dude what do you call the tube you keep the doobies in? Also what other things do you like about Canada?

once i bought a joint in colorado and they just called it a joint holder or something stupid like that, doobe tubes are the future.. canada is the future. i liked that the money had braille and that parts of it were seethrough.. the beer tasted like beer.. and tim hortons everywhere! yes! timbits!!!

Man, you do look like you're having fun! Is it hard for you to play guitar? And the burlesque video is great! Serious question- are your forearms ripped? It looks like it to me.

my wife says "yes, yes they are" but i think i'm out of shape, so who knows.

it's not hard for me to play guitar anymore because i've been doing it for so long but i'm thinking you mean because of the way i'm built? but honestly i've always been this way so i just learn how to do things with my body and don't know if it's hard compared to the way anyone else does it

Hi Erik, we talked on Tinder for a while, way back, about polyamory and queerness and such. Life kinda whisked me away. 1. How open are you about that part of your life, and if you are, how do people tend to react? Do you think it is easier or harder to be poly as someone who is already so visibly outside the norm in the rest of your life? 2. How are you?

hi! which part of my life? before i was married? i'm not poly anymore, that was a point of my life that has sailed away but at the time, i don't know that being outside the norm made it easier or harder. relationships are tough no matter what. but honestly i'm glad that stuff is in the past, i'm really happy with where my life is now. i'm good, you?

Philly here - going to come see you in February!

I was just wondering if you’re familiar with This Way to the Egress? They’re a great act from Bethlehem, and you seem to run in the same circles. Anyway...I dig your music! See you soon!

hi! yep, i met them once at some show, honestly can't remember what show but their music was cool! see you february!

Sooo... that's definitely pixellated footage of naked you tugging the old pleasure noodle while smoking in a chair you talks about satisfaction in the YouTube channel trailer right?

All of my what the fuck.

yes. yes it is. it was for an "artist statement" for a fake burlesque pageant where i had to explain my artist statement.. and.. well.. yeah. p.s. it wasn't blurred when they showed it live at the show.

Does the recent change in YouTube policy for monetization affect you as a musician or how you will use YouTube in the future?

BTW this is fun. I just came across your music this morning and love it

it does affect me, they're de-monetizing my account unless i get 1000 subscribers. but i haven't really made any money on youtube before (i think my youtube account has like $1.50 haha) so it really just makes me want to get better at youtubing.

thanks!! enjoy! speaking of youtube, the 12 music videos my wife and i made last year are all up on my youtube!

Hi there! I really enjoyed you and your wife's lovely performance at the Slipper Room this past summer (one of my favorite places) and you were super nice afterwards. What is your favorite bar or nighttime show in the city?

thanks! the slipper room is one of our favourite places in nyc as well! actually, the owner of the slipper is the man who married my wife and i. whew, so happy to hear i was super nice afterwards.. would have been weird if i was a dick right?

hmm, favourite bar/show in nyc besides the slipper room? probably like coney island usa or bizarre bar in bushwick. they're pretty much the 3 places you can find me when i'm in nyc. although i recently did a show at a bar called the west in brooklyn and it was a pretty cool bar. the house of yes is cool too.

why are you doing an ama?

because people have questions. i clearly look different, and people wonder about people who look different. people wonder about cripples, i hear the whispers, i see the stares, so why not allow people to ask the questions behind the safety of the anon internet? i want people to understand, to learn, to get shit off their chest instead of just assuming things and staring.

i'm doing an ama because i'm not scared to answer the real questions honestly. because nothing is too far or too much to say to me. because i won't be offended or scared of the truth.

because i want to help the cripple revolution but i'm too lazy to goto a march or a protest.. so i create my own protest.

Huh, I don't know what I was expecting from how you described your music but it certainly wasn't what I heard. Very pleasantly surprised though, love it! If I have one question it would be how has your disability impacted your music, if at all?

what did you expect? how would you describe it?

i think my disability impacts my life in all ways because it's part of me, but directly to music, it probably is the reason i play guitar the way i do (with the guitar flat like a slide guitar but played with my thumb instead of a slide)

What's your favorite show to do every year, and why is it Theatre Bizarre?

it is the most epic experience ever.. it's not even just a show, it's an experience! one of my favourite places in the world. everyone should go and experience it! i wish i got to experience it on the actual grounds. really, everyone, google Theatre Bizarre, and then imagine it a thousand times cooler than people describe it. there's no words. it rules

p.s. come visit me in the odditorium!

See you in October!

Hail Zombo!

hail zombo!

and praise zambo? ;)

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thanks! glad you dig the tunes! and hey, i agree with you on the more listens thing

navigating as a short dude.. umm, i try to avoid the farts.. but i do get to see some damn fine butts. butts are nice. damnit now i'm thinking about butts, what was your question? oh yeah, i look at the ground a lot, trying not to hit a big bump and flip over or run over someones foot to where they trip and fall on me. i am cautious of falling drunk people. they fall a lot.

personally i go the weed route. meditation is cool, it can help. find something fun and to distract yourself. distraction is key to not being overcome by pain. good luck! i'm still thinking about butts btw

Hey!! I saw you on my bachelorette trip to Coney Island last year. I have Ehlers Danlos Syndrome (connective tissue disorder, dislocate a lot among other things) and after going multiple times you were my favorite act simply for the awareness for OI you made sure to raise at the same time. Just wanted to say thanks for what you do.

My real question- you might have answered and I missed it, but what is scheduling like when dealing with chronic pain and the flares/brain fog that can come with it? Do you try to keep the schedule flexible or is it pretty much impossible in this type of performance and you just power through it?

hi! glad you had fun! see you again in coney sometime? the ask me anything is so fun to do at coney. oh oh and congrats on your marriage (that is if you went through with it.. you did right? omg i'm so nervous)

scheduling isn't that flexible.. weed helps power through it. #420blessed. i think my brain is always kinda pain foggy so i'm used to it.. maybe the foggyness helps the psychedelicness. hand in hand type stuff.

p.s. i know a bunch of people with eds.. they're stretchy.. some of their brains are even stretchier.. it's why i love them

In the movie "Bizarre" you are listed as girl. http://www.imdb.com/title/tt3904272/fullcredits Was this you? I remember your face from the other german documentary, and maybe some SXSW show. I guess.

that totally is me! but i don't know how to change the imdb listing, do you? i am not a girl. i used to spend a lot of time in the bizarre bar in bushwick.. they made me their king, and i ruled with a velvet fist. i haven't seen the film though, am i good in it?

and yeah! i was in a german documentary called "bleeding clowns", is that what you maybe saw me in? i've never done sxsw, not yet at least

I'll try to change it. You need to have an account there.

If you never were at SXSW it must have been the German movie, which played at the Berlinale. I think the french about the Brooklyn club was also at the Berlinale.

thanks!! that'd be awesome if you figure out how to change it.

that's pretty cool that both of those films were show there. the german one happened backstage before our show that night. and the french/bizarre one if a really cool bar in nyc that i perform at

For a second I thought you were the guy from Fury road who sits with all the telescopes. I looked him up and it seems he also suffers the same disease.

So suppose my question is have you ever been approached to be in any TV or films?

yes and no. once i was doing a show in la and someone was talking with me about it but i was pretty drunk honestly and didn't pay him no mind. there have been various little tv/film offers but i've never really looked into them, maybe i should!

What?

this is an ask me anything.. you can.. well.. ask me anything.. about anything