Danny: Red letterboard. Hello All My Brave Hearts!
Tara: That's a new greeting!
D: I am so glad to bring you this episode on a topic that I think about a lot. It is: drum roll... inspiration!
But first a brief intro. I am Danny, a nonspeaking autistic advocate and writer. And this is Tara, my sister and ally and main CRP (Communication Regulation Partner). Tell about my communication.
T: Alright! Danny communicates using Spelling to Communicate (S2C). The way that he likes to do it is he spells out his words, letter by letter, on a laminate board that has the alphabet and basic punctuation marks on it. Sometimes you'll hear him read his words out loud as he spells them, sometimes I'll read them out loud, as you've heard. In other cases, he'll prepare his words ahead of time and have a text-to-speech voice that he's selected read them out. How's that?
D: I am ready to ask you: what is something brave you have done lately?
T: That is a great question, Danny.
D: Red letterboard! I thought of it myself!
T: You sure did.
D: Red letterboard. I am so clever!
T: I know you're messing around right now, but you actually are extremely clever. And you know it!
D: I kind of do, but so are you.
T: Thank you, Danny. That means a lot coming from you. Let's see... back to the question, the brilliant question from your brilliant mind. What is something brave that I've done lately... I'll say something a little vague, but it's come up quite a bit lately. I'm just really trying to work on being a little less rigid about expectations I have for myself, for others, for the world around me.
I think it's important to have ideals and standards and boundaries. But there's a difference between having those in a way that's productive and motivates me to work toward having a better life, toward being treated better, toward achieving things that mean a lot to me, and the more negative side, where if reality doesn't meet those expectations, I feel stuck or frustrated or even devastated. So maybe embracing equanimity has been something brave that I've been working on lately.
And that feels brave because I think that for a lot of us these expectations and ideals are a way of structuring our world, to help us navigate us and maybe even have a sense of control, like a point of reference. It can be something that's difficult to let go of, even a little bit. It's not the most satisfying answer, but that's what is coming to mind.
What's something brave you have done recently?
D: I love that! It is so wise. I am doing something similar in trying to accept the election outcome as something to learn from and not despairing that I am surrounded by hateful bigoted people. Like I am being brave in examining my assumptions about who voted for Trump and why.
T: I think that's very mindful to examine something that pains you, and yet you're trying to understand it in a more genuine way.
D: Totally. It is tough but important to do.
T: I agree. So what now?
D: Let's jump right into inspiration!
T: Can I interject? This might be a little mutinous, but I think it would be really nice if we could have our listeners/readers share with us brave things they're doing, and maybe in future episodes we could share those?
D: I love that! You heard her, listeners! Send us your brave things.
T: Alright. Now we'll just into inspiration!
D: Inspiration is generally seen as a positive thing. But it can also be a limiting transaction where it taken in a superficial way that doesn't examine the impact to the inspirer. Disabled people know this well. We are an inspiration to others. It doesn't feel as good to be an inspiration to others when that just comes from you being in a more difficult situation than them. My struggle as inspiration might help others who comparatively have it easier, but it doesn't do much for me.
I am so wanting to inspire others, but in meaningful ways that feature my agency. I would love to inspire by my writing and advocacy and exploration of my limits. Not by my pitiable existence, nor by my loved ones sacrificing to care for me. I want to inspire by positive example and not by a comparison that features me as the "at least I don't have it as hard as him!" specimen.
T: That's totally understandable. No one wants to be told that their struggles are the reason that someone else feels better about their lives being comparatively easier. That's not something that leaves anyone feeling good about themselves. Like who among us, going through a hard time, has thought that "well, I'm glad that other people who don't have to deal with this can feel better about themselves."
And, you know, if that crosses your mind, as someone who has a comparatively easier existence, sure, fair enough, you can think that. But have the decency and wherewithal to not verbalize it! You don't have to express it into the external world outside of your head.
D: Totally!
T: And this is different than acknowledging the comparative privilege you might have. I think that they're related. You can acknowledge that someone else faces challenges and barriers that you maybe can't even conceive of. And there are times when it's appropriate to bring that up in conversation and acknowledge it out loud. But to say "hey, this makes me feel better about myself. It's inspiring to me that you can exist through your struggles" - I don't know. That feels very empty to me and very extractive. Like I'm getting inspiration, and you don't get anything out of this interaction.
I think a lot of this stuff is often framed as feel-good stories. But who is actually meant to "feel good" from those stories? When it comes to the not so feel-good reality of how do we create structures and ways of thinking and society that is better for the people who are struggling with disability or other barriers, people don't tend to pay that much attention to it.
This is such a generalization, but a lot of people are content to extract inspiration without meaningfully contributing to bettering the lives of those who need support.
D: I am in absolute agreement with you!
T: Well I'm glad to hear that, Danny, because I think it's important that I learn from you and from other disabled folks, because I'm also learning continually how to be a more mindful and better ally.
D: Exactly!
T: And it's really good for me to talk through this with you and to listen to your thoughts, because we've only ever really discussed this in passing. And I often think about how I interact with the inspiration that comes from my time with you and comes to you. There are times when I see how hard you have it in life, and how you persevere and how you are able to make progress on your goals, how you're able to be resilient in the face of these immense challenges that I've never had to face - there's something important in acknowledging that.
D: Totally. But you frame it as being valuable solely for your inspiration.
T: That's a good point. I don't, as I mentioned earlier, I don't mine that to see how I can uplift my own life. That's a byproduct of it - I do appreciate the privilege that I have, and I appreciate your efforts in living in this world with your disability...
D: Red letterboard! It is natural to inspiration in people persevering, but it is not enough to just use them for inspiration.
T: And I think it's also what you do with that inspiration. Like for me, not only am I inspired to appreciate my relative privilege, I'm also inspired to better understand what it is you experience and to better support you and to be a better ally to you and other disabled folks in the world. It's not just a self-serving inspiration. And I think that's where a lot of the casual conversation of "oh that's so inspiring!" kind of falls short. It's very shallow and self-serving.
D: Totally.
It is tricky because I don't want condescending praise for just existing or for doing things that are trivial to me. At the same time, I do want people to realize that my disability does mean that things that are easy for others are actually very difficult for me. So I understand if someone might be confused as to how to frame their reaction to me and what I do.
I think it comes down to respect. If you are inspired by how charitable you feel when you praise me, that is not true inspiration. If you feel like me just existing makes you feel better because you see how easy you have things by comparison, that is not true inspiration. If you instead feel moved by how meaningful it is for me to achieve something new that empowers me, or by my observations on interdependence, or by my bravery in standing up for my rights, that is inspiration.
I am thinking that inspiration should almost be a shared experience. If you say I inspire you, it should make me feel good, too. If it doesn't, it is almost exploitative. You are uplifted by standing on my unfortunate shoulders.
T: I love that, Danny. Don't stand on Danny's unfortunate shoulders, okay?
D: So unfortunate, these shoulders!
T: I really don't have anything to add, Danny. I think you put it perfectly. Inspiration should be a shared experience. A mutually uplifting experience. And again, for those of us who are relatively privileged - when we compare ourselves to people who are in a more difficult situation in life, I guess there's a part of it that's natural, by comparison, to derive some sort of comfort from "well, it could be worse!" - you don't have to say it out loud! Especially not to the people you're comparing yourself to.
D: Filters are important.
T: Exactly. Is there anything else you want to say about this?
D: You add more.
T: And if I can make it all about me for a little bit, or kind of pipe up to broaden this discussion a tiny bit: those of us who are support people for our disabled loved ones, sure, it's nice to hear that these efforts are noticed and acknowledged and appreciated. But similarly, we're not doing it to be an inspiration to anybody, and it can be quite isolating...
D: Red letterboard! Totally isolating.
T: ... to be a family doing this, and it's kind of cold comfort to hear someone saying "oh, that's so inspiring, it's so inspirational what you all do and what you all sacrifice!" If you do find it inspiring and feel you need to express that, maybe share how it's motivating you to be more caring and giving in your life, or how it's inspiring you to help others more, or maybe how it's inspiring to you look into how you can help lobby to make things easier for families with disability, for families where someone needs that intensive care, families of caregivers. That would mean a lot more than, "oh, so inspirational, what you all go through," and in the meantime, the reality of what we're experiencing and going through feels lost in that kind of superficial interaction.
Totally not trying to make people feel bad who might have said this to us in the past. We know that people are operating from a place of not being familiar with these issues or ways of thinking.
D: It is not to shame anyone. We just want share this.
T: Exactly.
D: That is mostly what I have for now on this topic. I want to say that I am inspired by you all being in my online community, and your positive feedback helps lift me up. Tara, send us off!
T: As always, thank you for listening/reading along with us. Please do like, review, comment, rate, share, subscribe - everything that you can do to help raise the visibility of this podcast. Danny also has... [loud stimming] you okay, dude?
D: I am full of energy and it is hard to contain so I am stimming.
T: Do you need anything else to help you feel more settled?
D: Not now.
T: Alright. Danny also has a Ko-Fi account if you feel moved and able to donate for his unpaid advocacy work online.
Oh yeah! Send us, if you want us to share them on the podcast in future episodes, examples of how you've been brave lately. In the comments or however you like to reach out to us, we'd love to share examples of how you have all been brave in your hearts recently.
Anything else?
D: Now now. Til next time!
T: Bye!
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