This is the final video in a four (4)-part video blog series by Andee Joyce. If you like this post, please leave a comment for Andee below.
Click to View the Video Transcript
Opening
(Introduction by Johanne Regunathan, OCDD)
0:00 Welcome to the Andee Joyce video blog
0:04 Singer. Songwriter.
0:05 Musician.
0:07 Artist.
0:08 Comedian. Blogger.
0:10 Self advocate.
OCDD Video Blog 4: Autism Below the Chin: It’s All Interconnected
I break every possible rule for a performer, including how I move
0:13 I often tell people that as a performing artist,
0:16 I break almost every possible rule for
0:18 what is socially acceptable in the performing arts –
0:22 my age, my dress size, my neuro-orientation,
0:24 and also… how I move.
0:27 And what happens when I move.
0:31 Feet,
0:32 what are feet?
Feet! Which way are they pointing?
0:34 Which way are they pointing?
Hypermobility spectrum disorder (HSD) and Ehlers-Danlos
0:37 Hypermobility spectrum disorder (HSD)
0:40 Very commonly co-occurs with autism and ADHD,
0:44 often secondary to a condition known as Ehlers-Danlos Syndrome.
0:47 hypermobile type or hEDS.
Ella the bendy Barbie is bendy like me
0:51 Sometimes I wonder who designed all these bendy Barbies…
0:56 Recently I got confirmation that I do, in fact, have hEDS.
1:01 And my elbow gets turned all around like that…
1:05 Various studies have found that as many as 50% of autistic people
1:09 have some form of hypermobility, compared to 20% of non-autistic people.
1:14 It means that you literally get bent out of shape very easily, because
1:18 the connective tissue that holds your body together isn’t forming as expected.
1:23 There – that’s a lot better, isn’t it?
Learning to bend without pain
1:26 Eventually, if it’s not managed well, everything hurts.
1:29 Even reaching for a mouse on your desk can be agony.
1:32 I basically spent 2025 learning how
1:34 to lift my left leg high enough to climb stairs,
1:38 bend my knees long enough to sit down and put on shoes,
1:42 walked two blocks on flat ground and get into bed
1:45 and into sleeping position without 12 alarm pain.
1:49 When I was a kid, I used to sit with my legs in a W shape, playing jacks.
How it all built up over time
1:54 The only way I was comfortable sitting on the floor!
1:57 For most of my life I didn’t own a car.
1:59 I walked and walked and walked,
2:01 stood on busses or trains during multi-hour commutes,
2:05 pushed and pushed and pushed,
2:06 trying to prove I wasn’t lazy and selfish.
2:09 And after decades of this, my body just went, “Uh, nope, we’re not doing this anymore.
2:14 In fact, we’re not doing much of anything until we build up strength and move
Rhythm and Autism clip: Clappy Monster Lament 3
2:18 in a way that doesn’t hurt.”
2:21 The last six years,
2:22 especially, have been big time body rebellion.
2:26 It’s like autistic burnout, but for my entire body!
2:29 So did I mention when the Clappy Monster first showed up,
2:35 (Andee singing) people were out in the streets every day
2:38 protesting injustice,
2:42 and I couldn’t even move.
2:44 And I couldn’t even move…
How do you perform if you can’t move?
2:47 So how do you perform if you can’t move?
2:51 I think a lot about Prince and Tom Petty, and how they got addicted to opiates,
2:55 because the way they put on shows,
2:57 beat up their bodies and left them in horrible pain.
3:00 And they felt like they would be cheating the fans if they adapted,
3:03 so they kept doing it until it killed them.
3:06 I, on the other hand, have always been wibbly wobbly.
3:13 And now, all of it goes into how I do my art.
If you move differently, you think differently
3:17 If you move differently, you think differently.
3:19 You just do.
3:22 Until recently, I didn’t honor that.
3:25 But now I must.
3:26 If I don’t, no one else will either.
Rhythm and Autism clip: Andy Yr Weerd 2025
3:28 Fortunately, I now have a physical therapist
3:30 who specializes in hypermobility.
3:33 We even went over some of my stage moves!
3:38 And after a few weeks of working with her, I did this.
3:39 (Andee performing) And I thought, “What if other people like to do this too?
3:45 I know they do!” One, two, three.
3:48 Andee you’re weird (audience sings backup) Waltz schmaltz,
3:51 this ain’t no waltz,
3:54 This is the stuff my hands do
3:57 and that’s not my fault!
3:59 Yes, that was a live audience doing that background chorus!
4:03 Oh my God, was that fun!
Stretchy vocal cords and bonkers high notes
4:06 I asked her if my stretchy vocal chords,
4:08 the ones that hit those bonkers high notes (Andee sings very high note) could be related to hypermobility,
4:12 and she said, yeah, maybe.
4:19 And yes, I climbed up a few stairs at the Walters Center to get onto the stage.
Advocating for access to the stage
4:23 I was able to do that this time.
4:26 I could have had a ramp there if I wanted one,
4:28 but I took the risk to improve the view from the audience.
4:31 But at least they gave me a choice.
4:34 That’s not always the case when I perform live.
4:37 Maybe one day I will need that ramp,
4:38 maybe even have to perform in a wheelchair.
4:41 If that happens,
4:42 I can’t let internalized or institutional ableism suck the marrow out of me.
4:47 People do perform in wheelchairs.
4:49 It’s not the end of the world.
4:51 But you do have to learn not to apologize for your disability.
4:55 You have nothing to be sorry about.
4:57 And I’m telling myself
4:58 that as much as I’m telling you!
Johanne outro: More information about HSD
5:31 And according to a 2022 study
5:33 published in the journal Frontiers in Psychiatry,
5:37 the neurodivergent population studied
5:40 have a higher prevalence of hypermobility at a rate of 51%,
5:45 compared to the general population rate of 20%.
6:10 We have also provided the link in the description below.
6:13 The video.
Johanne outro: More info about Andee and OCDD
6:22 You can also scan the QR code on this page.
0 Comments