Shownotes
After Hours Bonus - with Amy Butterworth
Jenn wilson
“We need you at your most irregular.” — Amy Butterworth
Jenn continues the conversation with guest Amy Butterworth (she/her) – Long Covid Rock Star, DEI Consultant, Advocate for Disability and Inclusion
After Hours Bonus Episode Overview
Jenn Wilson and Amy Butterworth dive deeper into the radical act of showing up for yourself. Amy shares how living with long Covid and disability has reshaped her understanding of rebellion, self-worth, and visibility. From skull-topped canes to velvet blazers and Enya-fueled calligraphy, Amy’s story is a celebration of nourishing your inner child, resisting societal expectations, and embracing your weirdness unapologetically. This episode is a heartfelt reminder that quiet acts of self-love can ripple outward and change the world.
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Connect with Amy
LinkedIn: @LongCovidRockStar Instagram: @longcovidrockstar
TikTok: @longcovidrockstar
About Amy:
Amy is an Equity, Diversity and Inclusion Consultant and disability activist living with long covid. Her background in comedy, youth coaching, psychodynamic consulting and inclusive programme-design means that she's always been a vocal ally, but now she speaks from lived experience. She learned long ago that she's irregular in every room, and that is why - and how - she gets things done.
After Hours Bonus Episode Takeaway
Showing up for yourself—especially in rest, softness, and self-expression—is a radical act of resistance that challenges ableism, honors your inner truth, and reshapes the world around you.
Further Resources: links to offers from Irregular that are relevant to the episode
More about this Bonus episode:
1. Showing Up as an Act of Rebellion
Amy explains how leaving the house as a disabled person is a radical act—and how aesthetic choices can challenge ableist assumptions.
2. The Concentric Circles of Consent
Jenn introduces her framework for self-permission and systemic resistance, and Amy reflects on how personal choices impact wider culture.
3. Nourishing Your Inner Child
Amy shares how honoring “little Amy” through music, art, and ritual helps her stay connected to her truest self.
4. Disability, Dignity & Aesthetic Power
From skull rings to purple wheelchairs, Amy talks about reclaiming disabled identity through style and self-expression.
5. Quiet Resistance & Creative Activism
They explore how small, private acts—like anti-fascist storytelling in a D&D group—can be powerful forms of resistance.
6. Fighting For, Not Just Against
Amy emphasizes the importance of leading with love and choosing causes that regenerate rather than deplete your energy.
7. Visibility at Your Own Volume
Whether loud or quiet, Amy and Jenn affirm that showing up in your own way is enough—and deeply impactful.
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Season 1 Episode 3
Transcripts
End Time: 00:13:50.769
Jenn Wilson: Hi! Irregular humans after hours. Bonus content. It's me, Jenn, with our amazing guest, long Covid, Rock Star, Amy Butterworth. Here we were just talking off camera following on from the the podcast stuff that we were talking about about that thing that we ended with, that Amy ended with about being kind to yourself.
Jenn Wilson: and it really touches Amy on a lot of the work that I've been doing with people that is helping them to recognise their own small personal acts of rebellion.
Jenn Wilson: and to recognise that just showing up in the world as you are is actually
Jenn Wilson: a radical thing to do sometimes. So
Jenn Wilson: I just wondered if you wanted to reflect on that a little bit.
Amy Butterworth (she/her): It's absolutely necessary. Let me make that very.
Amy Butterworth (she/her): very clear. In terms of being a regular. We need you at your most irregular
Amy Butterworth (she/her): like anytime. I leave the house I'm showing up
Amy Butterworth (she/her): for myself. It's not for anyone else, and the person who I'm showing up for the most now
Amy Butterworth (she/her): is little Amy, because part of the
Amy Butterworth (she/her): act of fitting in, or people pleasing whatever way you feel like. You have been taught that you need to be safe by blending in or fitting in. And all of these things you are actively abandoning
Amy Butterworth (she/her): yourself in some way.
Amy Butterworth (she/her): So the most important thing to me
Amy Butterworth (she/her): is that I check in with her.
Amy Butterworth (she/her): and I go. What is it that you need?
Amy Butterworth (she/her): And who can give that to you? And it always has to be me? We cannot outsource this.
Jenn Wilson: Hmm!
Jenn Wilson: So one of the things that I teach a lot in in my work is, I call it the concentric circles of consent.
Amy Butterworth (she/her): Oh!
Jenn Wilson: And
Jenn Wilson: what I what I say is, there's, I mean, there's obviously actually many more than 4 layers. But there's 4 layers where you can apply consent.
Jenn Wilson: The 1st one is the consent you give yourself the permission you give yourself, and the coercion that you put yourself through of I have to I must. And I should.
Jenn Wilson: And working out what you're actually choosing consciously to allow yourself or not, allow yourself to do. The next is the interpersonal level. You know, interpersonal consent as we agree things as individuals.
Jenn Wilson: The 3rd one is that group dynamic thing, and how different groups have different, unwritten, usually assumptions and rules about how we're supposed to behave in any particular given circumstance or setting. And then there's system society culture, that is, that informs all of the rest of it that actually shapes it all right back down to how we see ourselves
Jenn Wilson: at what we think it's possible for us to do, because we are carrying everything we learned
Jenn Wilson: about what it means to be a person of a particular gender, or age, or status, whatever
Jenn Wilson: a person whose parents told them something about themselves that they're carrying as a belief about themselves or whatever it is.
Jenn Wilson: And so when we actually start the resistance at the level of
Jenn Wilson: actually, do you know what I'm going to give myself permission to not beat myself up about that today? We are pushing back against all of those other things.
Amy Butterworth (she/her): Yes.
Amy Butterworth (she/her): and the image of the concentric circles means that it ripples out because it means that society is then affected by how you've shown up. There's a very brief video that I did about this. There was an amazing book called Crip Kinship.
Jenn Wilson: But by
Amy Butterworth (she/her): I need to get their name. One second Shada Kafi.
Amy Butterworth (she/her): and it's about the disabled, queer community in San Francisco and creating a space for them.
Amy Butterworth (she/her): and how, when you show up as a disabled person in any room
Amy Butterworth (she/her): loving yourself, it politically changes the room that you're in.
Amy Butterworth (she/her): because you're showing them the potential
Amy Butterworth (she/her): of what this society could be in, and one of my greatest, I think maybe
Amy Butterworth (she/her): the foundation for my act of rebellion, perhaps, is
Amy Butterworth (she/her): having a skull topped cane if we take that as a symbol. Right? So 1st of all.
Amy Butterworth (she/her): I had to accept that I had a disability. I had to accept all of the weaknesses and vulnerabilities that my body now has to face, which is
Amy Butterworth (she/her): hard and humbling, and daily. I've lived with this for 4 years I will continue to have to confront this, my limits and the frustrations of it, and and the humility that it has to take.
Amy Butterworth (she/her): I resisted getting a walking aid for a while, because, you know, Ableism.
Jenn Wilson: Hmm.
Amy Butterworth (she/her): And I was like, well, I don't want to have to give up what you'll give. Actually, you're not giving up. You are outgrowing your assumption.
Amy Butterworth (she/her): Of what disabled looks like, but also that you don't deserve help.
Amy Butterworth (she/her): So I had to shift out of that and go right. Okay. So
Amy Butterworth (she/her): maybe I should have a walking stick, because it was very tiring to walk to the end of the road. I was walking very slowly, and people didn't know why
Amy Butterworth (she/her): there were. You know, people in London. People get annoyed with you right? So
Amy Butterworth (she/her): I'm a i'm a rock music fan as we've established, and I have a lot of skulls around my home and on my person in my jewelry, my tattoos. And I was like, if I'm gonna have a walking stick.
Amy Butterworth (she/her): I'm gonna make it cool as hell.
Amy Butterworth (she/her): And so just by having a stick that I liked using
Amy Butterworth (she/her): shows that I'm not ashamed of this.
Amy Butterworth (she/her): So whatever you think about disabled people. You are now confronted with somebody who is disabled and doesn't agree with you.
Jenn Wilson: Hmm.
Amy Butterworth (she/her): And I'm walking really. So I know that. You know, you're you're
Amy Butterworth (she/her): everyone's gonna be looking at me because I'm going to take a long time walking across the street, so I may as well give them something to look at, and I'm showing up in my most outrageous
Amy Butterworth (she/her): rock, chick. If I can't leave the house, which is for some days at a time. I'm lying on the sofa in leather trousers.
Amy Butterworth (she/her): and my and my silver skull rings are on my fingers every day, because I will not have this compromise my own
Amy Butterworth (she/her): self. I will not have society. Tell me you don't work. You're not worth anything anymore, because you can't work. That is not
Amy Butterworth (she/her): the level of my value
Amy Butterworth (she/her): for my life. I took a lot of pride in my work, and I continue to work, but in very, very different ways, just because I can't earn money doing it because I can't work a full time job and be in whatever system you think is the only way to be
Amy Butterworth (she/her): I'm still engaged with my purpose.
Amy Butterworth (she/her): and while it's not directly affecting young people at the moment. My purpose is still, everyone deserves access
Amy Butterworth (she/her): to support and dignity.
Amy Butterworth (she/her): I'm unshakably right about that. And when we talked about bigots I will not be complicit, and people go, everyone except them. Well, they deserve less access. So that's where I go. Why, them
Amy Butterworth (she/her): and you know that people say that about you, but they're in rooms that you'll never be allowed into. And so my acts of rebellion, in order to affect the outer circle of your circles of consent, is to show disabled people look like this, too.
Amy Butterworth (she/her): basically. And we won't be apologetic for it. My wheelchair is black and purple like it's all
Amy Butterworth (she/her): involved in my
Amy Butterworth (she/her): aesthetic presentation, and not everybody engages in their aesthetic presentation like not everybody expresses themselves visually. That's fine. As long as you're still doing your your crafting on the sofa, or you're listening to that music the other day. And this is for your subscribers. By the way, because it's not a lot of people that I say this to. I really needed to nourish little Amy
Amy Butterworth (she/her): and make sure that she was feeling cared for and heard and just
Amy Butterworth (she/her): no longer ignored. Right, because I'm doing a lot of grown up stuff at the moment I've got, like, you know, I'll get. I'll get to you. I'll get to you. I needed to get to her.
Amy Butterworth (she/her): And so what I did was what I did as a teenager in the nineties, which was, I can't believe I'm saying this Jen, but I put on.
Amy Butterworth (she/her): I put on Enya, and I did some calligraphy in my velvet blazer because my queerness was really obvious. I just didn't realize that these were all signs of it, but it was just this kind of weird, like Gothic witchy, like really peaceful. I lit some candles I was doing like.
Amy Butterworth (she/her): but that was my way of going. This doesn't matter to anyone else.
Amy Butterworth (she/her): There is no quote point in doing this.
Amy Butterworth (she/her): No one's gonna see this, no one's gonna quote benefit from this, this is entirely for me.
Amy Butterworth (she/her): and by doing that for me and for little Amy, it means that the next time I leave the house.
Amy Butterworth (she/her): I'm leaving it closer to my most self.
Jenn Wilson: Yes.
Amy Butterworth (she/her): Because I've nourished her in my weird, nerdy, queer, irregular way.
Jenn Wilson: Yes.
Jenn Wilson: oh, all the yes, so so important that I like I did a I did a tiktok the other day, which was, I found a badge that I bought myself. That said Show up loudly.
Jenn Wilson: and I bought that, and it's in kind of queer colors, and I was like, and I bought it from a queer store. And I was like, Yeah, yeah, queer people showing up loudly. And then I thought, Oh, actually, it's also totally okay to show up quietly, or to not show up at all, or to show up at whatever volume feels comfortable today, or you know whatever
Jenn Wilson: because some days. We are not up for you know, today, and for anyone who you know is listening or has a visual impairment. What I'm wearing is a T-shirt with a dandelion with its seeds coming out, and the colors of the seeds are yellow and purple, and the rest is white on a black T-shirt. It is a very subtle indication of non-binary pride that
Jenn Wilson: that I could wear in front of someone who doesn't know those colors, and they would not know anything about that statement that I'm making. However, another non-binary person will go. I love your t-shirt. Where'd you get it, and know instantly that I am a fellow?
Jenn Wilson: Queer person?
Amy Butterworth (she/her): There's semiotics everywhere. There's signage that you can show, and I completely agree with you. Not everyone shows up loudly. Everyone shows up quietly as long as you show up for yourself. I did a a video about that about how there's a lot going on, and it's impossible to fight all the causes. So what's really important is that you choose your own cause, and you double down on it.
Jenn Wilson: To.
Amy Butterworth (she/her): Because and and even if you're not fighting for something oh, well, I
Amy Butterworth (she/her): it's a lot easier to fight for something than against something, because when you're fighting against something, you run out of energy.
Jenn Wilson: Yeah.
Amy Butterworth (she/her): Right. You're up against a wall. If you're fighting for something you're leading with love. And it's regenerative energy. Right? It's okay. I know what I want to go towards rather than what I want to stop. So again, language is very important. And so
Amy Butterworth (she/her): sometimes there isn't a cause, and you're completely isolated, and you're completely on your own.
Amy Butterworth (she/her): That's why you have to be at your most rested and your most weird. And some of the comments on the video are extraordinary. There was one person who said, I've got a number of neurodivergences, and I simply
Amy Butterworth (she/her): cannot. I'm scared of everything. I'm scared of leaving the house and everything. What I'm doing
Amy Butterworth (she/her): is in my D and D group.
Amy Butterworth (she/her): I'm creating anti-fascist storytelling
Amy Butterworth (she/her): so that we can discuss politics, sociology in D and d. That is their way of showing up. That is their way of resisting the rise of fascism with their 4 people.
Amy Butterworth (she/her): Probably they don't leave their homes either, because not everybody can. But that is how you show up for yourself. And it's not always telling.
Amy Butterworth (she/her): it's not always standing outside Number 10 to protest. It's letting yourself know that you won't be complicit
Amy Butterworth (she/her): in whatever compromise you're being forced to make, and that is enough.
Jenn Wilson: That is enough.
Amy Butterworth (she/her): To show up for yourself your younger self to go. I hear you. I got you, and
Amy Butterworth (she/her): that is what I think. Being a regular is.
Jenn Wilson: You're absolutely right. Thank you, Amy, for really just being, you being a regular and and sharing your wonderful thoughts and wisdom. It is such a pleasure.
Jenn Wilson: I'm going to sign off now, reluctantly and say goodbye.
Amy Butterworth (she/her): It's such an honor. Thank you. Thank you for having me.
