Diversability Amplified Podcast:The Representation of the Disabled Lived Experience with Sarah Todd Hammer [S2:E12]
In today’s episode, host Erin Tatum is joined by activist, author, and content creator Sarah Todd Hammer. They discuss the pressure to portray your experience as a disabled person a certain way, which can lead to feelings of stress, disappointment, and a belief that disabled people can never “win.” Sarah speaks about finding the confidence to rise above these expectations and embrace your disability journey the way that you want to. This episode is for anyone who has experienced the dichotomy of joy and negativity that often comes with living with a disability.
Sarah Todd Hammer (goes by "Sarah Todd" as a double name) is a 23-year-old three-time published author, speaker, and disability advocate and consultant. When Sarah Todd was eight years old, she acquired a spinal cord injury from C2-T1 due to a neurological condition known as Acute Flaccid Myelitis (AFM). After publishing her first memoir at age 11, she wrote two more books as a teenager and immersed herself in the disability advocacy space. She has a following of over 350,000 people on her Instagram, TikTok, and YouTube accounts, where she shares her life as a disabled individual in a fun, positive manner.
Show Notes
Challenges in Disabled Representation
Caregiving and Disability Challenges
Disability and Health Challenges
Social Media Boundary Setting
Everyday Advocacy for Accessibility
Sarah's Content and Training Plans
Self-Advocacy and Disability Challenges
Summary
Quick recap
Sarah Todd Hammer, a young disability activist and content creator, shared her journey from writing a self-published book at age 10 to becoming a prominent disability advocate through various media platforms. She and Erin discussed the challenges faced by disabled individuals in representing their experiences, including societal pressures to conform to specific narratives and the complexities of caregiving and disability. The conversation covered topics ranging from setting boundaries on social media to everyday advocacy, with Sarah sharing her upcoming projects and initiatives focused on self-advocacy and disability awareness.
Challenges in Disabled Representation
Sarah and Erin discussed the challenges faced by disabled individuals in representing their experiences, highlighting the pressure to conform to either an inspiring or overly negative narrative. They agreed that disabled people often face criticism for expressing either happiness or difficulties, with society frequently using their experiences as a benchmark for other problems. Both emphasized the need for more nuanced and holistic representation of disabled individuals' lives, free from the expectation to fit a specific narrative.
Caregiving and Disability Challenges
Sarah and Erin discussed the challenges of caregiving and disability, with Erin sharing her mother's experience of transitioning from being a caregiver to needing care due to a terminal illness. They explored the complexities of finding reliable caregivers, the financial and logistical challenges involved, and the societal attitudes towards disability and caregiving. The conversation highlighted the need for more accessible and supportive systems for disabled individuals and their caregivers, as well as the importance of raising awareness and understanding about the realities of living with a disability.
Disability and Health Challenges
Sarah and Erin discussed the unpredictable nature of disability and how people can be both cautious and complacent about their health. They shared personal experiences of unexpected health challenges and the cognitive dissonance of thinking nothing else could happen after acquiring a disability. They also touched on societal attitudes towards disability, including harmful comments and the need for better representation in media, emphasizing that people adapt and find ways to live their lives despite challenges.
Social Media Boundary Setting
Sarah discussed her experience with setting boundaries on social media, particularly regarding unsolicited advice and questions about her disability. She explained that she started using the "no advice" request in her video captions to reduce intrusive comments, which has been helpful in setting expectations for her followers and protecting her privacy. Sarah emphasized that people with disabilities often face unnecessary pressure to justify their choices and experiences, and she encourages others to establish similar boundaries to maintain their autonomy online.
Everyday Advocacy for Accessibility
Sarah and Erin discussed the importance of everyday advocacy for people with disabilities. They emphasized that simple actions, such as reporting accessibility issues or considering the needs of disabled people, can make a significant difference. They also highlighted that activism does not have to be a full-time commitment, and small acts of empathy and inclusion can contribute to a more accessible world.
Sarah's Content and Training Plans
Sarah discussed her recent activities and projects, including her focus on YouTube content, social media platforms, and consulting work. She mentioned writing her fourth book and planning a virtual training session on self-advocacy, which she aims to launch within the next few months. Erin offered to promote Sarah's upcoming training session within their network, and Sarah agreed to share the details once finalized.
Self-Advocacy and Disability Challenges
Sarah discussed her experience with self-advocacy and the challenges disabled individuals face in asking for help, particularly the guilt associated with it. She emphasized the importance of recognizing that disabled individuals deserve access to resources and support, and encouraged others to speak up for their needs. The conversation highlighted the complexity of disabled experiences, including both the challenges and unexpected benefits of living with disabilities.
Transcript
11:35:54 Are you okay? Are you okay with. They're recording this?
11:35:57 Yes.
11:35:58 Cool. So today for Divers Believe.
11:36:03 I feel it. We're here with Sarah Todd Hammer!
11:36:09 Who has a disability activist, content creator, author, and speaker, really, it would be easier to list what you don't do.
11:36:17 And you've been. I'm a very strong advocate for dis…
11:36:23 Disability rights throughout your life, um, really. Motivated you to want to speak out on disability and your lived experience.
11:36:33 Thank you for such a kind introduction. Um, well, I'm 23 now, so I… have had a disability for most of my life, because I became disabled when I was 8 years old.
11:36:45 Um, so for 15 plus years, I've lived with a disability.
11:36:50 And when I was 10. I met one of my best friends, we're still best friends to this day, who has a similar disability to me.
11:37:00 And we decided to write out our disability stories together and self-publish them into a book.
11:37:08 And that's really what motivated me to start talking about disability, because.
11:37:13 We just kind of did it for fun. It was, like, just a little… project we did as friends, as children, and it was really therapeutic for me, honestly, writing about my story, and we had such great reception, great feedback, so many parents and, um, other disabled people read the book.
11:37:35 And so I just kept going from there, and that's kind of what started it all.
11:37:41 Yes, you would say that your momentum and the positive energy.
11:37:45 From the community really lends itself to you becoming the activist that you are today.
11:37:51 Yeah, totally. I mean… that was not something I really intended to happen. Like, I, for one thing, didn't intend to actually write a book.
11:38:00 That was just kind of this fun thing. My friend and I did, and then we ended up doing two more when I was 14 and then 17, so we put them together into a trilogy.
11:38:10 Um, so I didn't intend to even do that. But then, I also just really learned that I love to write through writing the book.
11:38:19 And that I like to speak, because we did some little book signing events, like, at my school.
11:38:25 Um, and at hospital. And so I was like, I should just keep doing more of this, so then that's kind of how I started…
11:38:32 Writing for news publications, like I did a feature in Seventeen and J14 when I was a teenager.
11:38:40 And then when social media became, like, a bigger thing, as I got older, I was always open about my disability on social media.
11:38:48 And I shared my story on there. And just… it so happened that it took off, like, in 2020, um.
11:38:56 During COVID times when everyone was on social media. And so that's how I ended up doing that. So it's almost like one thing just led to the next.
11:39:05 Yeah, it's… it's so weird how. Any unintentional careers and life stories were launched during lockdown because nobody had anything to do.
11:39:14 Yes. Everyone was so bored.
11:39:19 You're like, whoops! I would just put. Don't stick because we were in quarantine, but now I'm.
11:39:25 Yes. I know, that's literally how it happened. I just decided to make a TikTok account, because everyone was using TikTok.
11:39:33 And I was a viewer of TikTok content for a while, but then there was this trend everyone was doing where it was like.
11:39:41 You would hold up both your hands and do, like, put a finger down if, and then tell some really wild story that happened to you.
11:39:47 Um, I can't move one of my hands, so I held up my one hand and, um, told my disability story and put my finger down at the end, and it got, like, a few million views.
11:39:58 I was getting so many questions, and so, like, clearly people are interested in this, so… it just went from there.
11:39:25 I have a similar story where I've been on. Tiktok for years, and I'm a little older than you, I'm 33!
11:40:16 Which, like, I just had a teenag to be able to watch other TikToks.
11:40:20 Yeah.
11:40:23 Gently falling apart at the last… my primary caregiver got…
11:40:26 Yeah.
11:40:30 I got diagnosed with ALS, so now… Now we're both disabled women!
11:40:34 Oh, I'm so sorry to hear that.
11:40:37 Thank you, but it really goes. To show that disability can…
11:40:42 Thank you at any time, even though.
11:40:48 A disabled person in my family, and then the universe was like, JK!
11:40:52 Yeah, your identity. So basically. I posted on TikTok because.
11:40:58 I was desperate to find a caregiver because. Mom can't take care of me anymore, and I couldn't…
11:41:04 Couldn't find anyone on, like. The traditional caregiving websites, like Care.com, so I posted a TikTok just being goofy, and I was like.
11:41:13 Please help me stay alive! Like, really silly with it.
11:41:17 Using humor for that.
11:41:25 If you're not laughing all the time. Just be crying, so I was like.
11:41:29 Yes.
11:41:32 The productive, so I might as well do this. Followers from that, and then I just never stop posting, and…
11:41:42 Mom was at 90K, and I'm like, I guess I'm in.
11:41:46 Yeah!
11:41:44 That's a lot, yes. Yeah. You have, like, an audience who's expecting something from you now, that's what happens. It's like they follow you in, you have to keep posting.
11:41:55 I… I know, certain… I'm gonna keep posting, and I'm like, I guess, I'll just.
11:42:01 Who's nonsense? Like, it was never really. My plan, you know?
11:42:01 Yeah.
11:42:05 That's how it happens. It's honestly the best when it happens that way. It's more fun.
11:42:10 Yeah, but I know today you definitely. I wanted to speak about, um.
11:42:16 Disability is perceived both. Positively and negatively, and how.
11:42:21 The outside community perhaps motivated. But ableism kind of expects.
11:42:26 People with disabilities to present their lived experiences in a certain way.
11:42:31 Mm-hmm. Yeah, this is something I've felt a lot, especially as I've gotten older.
11:42:36 And, you know. Become more comfortable in my disability identity, so by default, then, I'm more comfortable kind of, like, sharing the whole story and not just focusing on the good.
11:42:48 Aspects of it. I'm a very positive person, so what's helped me grow comfortable in my disability identity is.
11:42:56 Focusing on the positive things that have come from it, and, like.
11:42:59 Talking about those and showing that. There are positives to this experience.
11:43:05 But I feel like I maybe wasn't letting myself, like, sit with the negative experiences enough.
11:43:12 And I would kind of just, like, brush past them, or, like, not actually think about them deeply.
11:43:18 So, um, I started talking about them more on my TikTok, my YouTube. I did a short film.
11:43:26 Uh, while I was at Davidson College last year as a senior that kind of explored.
11:43:33 You know, positives and negatives of my experience. And I realized that when disabled people talk about the challenges that we face, or the negative aspects of our experience, a lot of people don't really…
11:43:44 Get it, and they don't really like it when that's discussed, like… uh, there's this either-or with representation, like.
11:43:53 You have to fit, like, this inspiration narrative, where, like, you're so positive, like, you can do anything, you're so great.
11:44:00 Or it's like you're just the most miserable person ever, and there's never this, like, nuanced… perspective to that representation.
11:44:10 Yeah, I agree, and first of all, thank you for sharing.
11:44:14 Your experiences with how people interact and react to you, because I know.
11:44:19 As a person with a disability, with a… platform, there can be that.
11:44:24 Measure to perform or portray your identity a certain way, but… You need to understand that real life isn't always like that.
11:44:32 Yeah, and there is a pressure to… So, the good parts of it, and I definitely feel that, like, I was doing that for a long time, just because that's how I am as a person, and I wanted to show those things.
11:44:45 But as soon as I started showing any of the negative or challenging aspects of my experience on my social media, you know, people accuse disabled people of.
11:44:55 Whining, or, you know, not being strong enough. Blah, blah, and it's gotten to… this point where I've come to the realization I feel like disabled people are kind of put in this place where we can't really win.
11:45:07 With how we portray ourselves. And how we talk about our experiences.
11:45:14 Yeah, and even, I feel like, in my… Reason ex… experiences, people kind.
11:45:21 Shoehorned being the inspiration, poor narrative, I'm… Like, I'm just right as a cheerful person.
11:45:30 But even within the past few months, talking about how my experience with disability is.
11:45:29 Mm-hmm.
11:45:35 Changing, and obviously a lot more negative and a lot angrier with my moms.
11:45:40 Mm-hmm.
11:45:41 Diagnosis? That's it where I talk about that, always sinks like a rock, and it really.
11:45:49 Reaffirms to me that, like… like… I feel like a lot of times people only want.
11:45:56 Consumed disabled people to feel better about their own lives and their own problems.
11:45:48 Oh, yeah.
11:46:03 This test for whether your life is shitty, like, we're… actual people!
11:46:06 Yeah. Yes, that happens all the time, like…
11:46:11 Using disabled people as this comparison tool. Which is why I wanted to focus so much on the positive aspects of my experience, to show, like, look, my life is amazing, like.
11:46:22 And I do believe that I have such a great life, I do love my life, I've gotten to live such a great life. I'm very fortunate.
11:46:29 To have lived so far. But at the same time, there's things that are challenging, too. And we should be able to talk about it all.
11:46:40 Again, it reaffirms… representation more broadly, but also… also in daily life in the year of our Lord.
11:46:49 20, 25 people with disabilities aren't… still aren't really viewed holistically, because people view our stories and our narratives.
11:46:58 As part and parcel, they can kind of cherry-pick or turn mine as they please.
11:47:02 Mm-hmm. Yes, you said that so well, like, cherry-picking it, that is totally what happens, like, let's show this one aspect of this person's life and act like that's the only thing.
11:47:15 That that person experiences.
11:47:18 Also, it's like, if… you said that. When you've expressed happiness, people… people will say, like.
11:47:27 How could you be happy while being disabled? And it's like, I'm sorry, did you want me to just, like, lay down and never get up?
11:47:35 That's the thing that I mean, where I say we can't win, because if I show how happy and positive I'm being, I'll get comments like that, like, oh, like, that's wild, I would never want to be disabled, how can you say… you're happy being disabled. And then if I talk about the challenges I face with being disabled, they're like, well, just be grateful for what you have.
11:47:54 Like, just be happy.
11:47:56 People are always like, at least you're not dead, and I'm like, yeah, but it's… The standard of Quebec!
11:48:03 Comparison?
11:47:59 Yeah. I can't stand those comments. I mean, there are so many things that are worse in life, like.
11:48:09 In my opinion, for me, like, that I… I would much rather not experience, like.
11:48:15 To me, like, losing a loved one, like. Losing my mom or something is, like… a fear of mine that I would much rather not experience compared to, like, having a disability. Like, there's so many things that are worse.
11:48:29 In life.
11:48:33 That, too, because historically. This figure to me has always been my mom!
11:48:39 Me too.
11:48:39 I've always been inseparable, and it's like, now that she's. The terminal illness, I'm like, wait, hold on!
11:48:47 Universe, like, I thought I was the one. Suffering in this dynamic, and like, what in my.
11:48:52 That would hit hard.
11:48:52 How do you deserve that, you know? Because all she's ever done is take care of me. So it's like, well.
11:48:58 That shit idiot, I'm really struggling to… process that, because it's like, even.
11:49:04 Of course you took care of me, she took care of.
11:49:07 Herp! Her best friend had ALS when I was a teacher. Actually, so she took care of her.
11:49:10 Wow.
11:49:14 And then even before I was born, she took care of my dad's grandparents.
11:49:21 She's always been caregiving. That's, like, so sad.
11:49:25 You spend your whole life taking care of disabled. People, and then, at the end of your life, you become disabled.
11:49:31 Like, what kind of things is that? Disability is nuanced, and it can be really shitty.
11:49:38 So…
11:49:39 And that's such a good example, though, of how. You know, even caregivers aren't exempt from it. Like…
11:49:46 You know, a lot of people don't think about that.
11:49:48 Yeah, so, so my mom's. I don't care. Caregiving for other people, for, like.
11:49:54 45 years, and now she… and now she is a… Terminal illness that she also had to watch.
11:49:56 Wow.
11:50:03 That's so sad. Your poor mom, I really feel for both of you.
11:50:01 Her best friend die of, and it's like… You know…
11:50:10 It's just so random and thankless, but it just goes to show that while you… Happy days, you have to celebrate them!
11:50:12 Yeah. Yeah, you have to enjoy it while you can. I've definitely been in that mode because my grandma passed in May, and…
11:50:22 Sorry.
11:50:23 She had, like, a lot of regrets, like, towards the end of her life, or, like, things that she wished she had done and didn't.
11:50:29 And she was 88, so she lived a great, long life, so that's good. But… she really, like, her experience taught me to be like, okay, like, yes, I'm going to also think about the future.
11:50:42 But I'm not guaranteed to, like, wake up tomorrow, so I'm gonna try to enjoy every day as much as I can.
11:50:48 And do what I want to while I can, and, like, not feel bad about, like, you know, spending money on, like, a meal out, or, you know, things like that.
11:50:59 Like, a super fancy dress for you, and run my. Put it on me, and I was like, why am I wearing this? This dress is…
11:51:07 For, like, a wedding, why would I wear it for a podcast? And she was like, I don't.
11:51:12 It looks nice, and I was like, oh, you're right! So…
11:51:13 Yes. Just enjoy, like, you know, you have to enjoy the things we have, and… not hold them for a different day.
11:51:28 People don't understand that there's this disability community is so… fluid in that. Anyone could go in and out of it at any time.
11:51:36 So.
11:51:35 Yes, so it's… all it takes is… one moment for something to happen, which I think it scares a lot of people, like, when that gets brought up.
11:51:41 Yeah.
11:51:46 That scares people, and I'm always like. Well, if that's scary to you, which is a natural response to have, like, obviously we're gonna be scared of.
11:51:53 Disability that's normal to be scared of. But it'd be less scary if, like.
11:51:58 Things are more accessible, like if it were easier to get around, if healthcare were easier to access, if… People had better caregiving situations.
11:52:08 It would be a lot less scary.
11:52:12 Yeah, and I know, for me personally, that was a really big fear that I.
11:52:18 Face because, except for when I was a… College, my mom is taking care of me my whole life!
11:52:24 Eventually, I knew she would age. And I was, like, preparing for her aging out anyway, you know, because she is 6… 69, but…
11:52:34 The onset of the ALS was so much faster than, like, natural aging would be, so then I was in this scenario.
11:52:43 Like, she couldn't take care of me, and I didn't have any caregivers, and I was like, what are.
11:52:47 I do, because I feel like. Researchers, like, aren't really available, you know what I mean?
11:52:50 You're stuck. Yeah, and…
11:52:55 This is another thing that gets brought up a lot, too, in our community, is, like, people say, well, just hire a caregiver. It's like.
11:53:06 There are so many bad people out there, I just have to say.
11:53:02 It's really not that simple.
11:53:10 I've had so many wild… dangerous, like, weird experiences with caregivers, yeah.
11:53:15 With caregivers. I'm not surprised, unfortunately. I mean, I have been lucky enough.
11:53:23 To always have someone from my family be around, or when I was in college, have friends.
11:53:25 Yeah.
11:53:28 And I had considered having someone, like, in college for at least, like, the mornings and the evenings.
11:53:35 But I've always tried my hardest to avoid it if I can, because I know that.
11:53:39 It can be scary, like, there's scary situations that can happen.
11:53:43 Yeah, I've got… I've got… I won't tell you all my horror stories, but yeah!
11:53:51 Like, I'm… I'm… I'm safe now, and I was safe then, but yeah, it was, like, a lot of weird and creepy…
11:53:58 Things happen to me in college, so I was all. Do it anymore, but I really don't want to, like, invite this weirdness back into my life.
11:54:10 You can't control. I know.
11:54:08 No, understandable, yeah. Yeah, and, I mean, not only that, but, like, also just considering the fact that.
11:54:19 Yeah.
11:54:16 They cost money, and you have to, like, hope that they show up on time, or if they, like, show up at all, because I know a lot of the time, like, caregivers just don't show up.
11:54:27 Oh yeah, and you get stuck in bed! Yeah, that used to happen to me all the time in college. It was so bad.
11:54:29 Yeah. That's horrible. And then you're probably missing class, and yeah, I mean, there's just so many issues with it, like.
11:54:39 Meanwhile, people think it's as simple as just, like, hiring a caregiver.
11:54:45 I don't know what people think caregivers do, but obviously. The situation varies from person to person, and what…
11:54:53 Yes.
11:54:53 Their situation… I don't know if. Like, nannying, where all you have to do is, like…
11:55:00 As easy either, but I think. People view it as more like a babysitting, but, like, when you're…
11:55:06 Dealing with an adult who has, like. Job and obligations and… whatever, it's, like, it's different, because you're managing multiple schedules.
11:55:14 Yes. Yes, yeah, I mean, there's so… so many complicating factors there, and I feel like these are the types of conversations that are important to have.
11:55:26 Like, discussing, you know, my caregiver didn't show up today, this is how that impacted me, or… You know, this is the type of help that I rely on other people for every day, and this is why.
11:55:38 And a lot of people, I think, just aren't ready to hear those conversations. Like, when it… I just noticed whenever I share on my social media about, like, relying on people for help, things like that, the reception… from disabled people is often, like, thank you so much for saying this, I'm so glad someone's finally talking about this.
11:55:58 From non-disabled people, it's… the complete opposite. It's a very negative reaction.
11:56:06 A lot of people are taught to ignore disabled people, because.
11:56:09 You don't want your life becoming like disabled people, because. You can't imagine what life would be like to be disabled, because.
11:56:17 Our society is engineered around. Habitually excluding disabled people.
11:56:23 So, you… you don't want to interact with something you don't want to become.
11:56:23 Mm-hmm.
11:56:29 Mm-hmm, they don't want to think about it. It… they totally want that off the table for them.
11:56:36 Yeah, and also, again, with the caregiver separation, like, people assume that.
11:56:41 Caregivers are like a different group of people, but, like, in my experience.
11:56:46 Now my mom and my caregiver is not only also disabled, but will become.
11:56:52 More severely disabled than me, so it's like, that's also a really weird.
11:56:53 Yeah.
11:56:56 Phenomenon, too. Wrap your head around.
11:56:59 Yeah, to think about that, like, also. Thinking about how someone goes from not having that at all to their health declining.
11:57:08 So quickly, like, it's a really good example of disability impacting us all, or, like.
11:57:14 Never knowing how disability is going to impact us, but it was really funny to me when you said something about, like.
11:57:20 How you were like, oh, I'm the only disabled person in the family, or like, oh, it'll just be me, because I've literally had thoughts like that before, where, like.
11:57:28 I… I'm not a… I'm not paranoid about things, but I guess I'm very cautious about, like, you know, my health and, like, keeping track of things, and I'm like… Because, like, I know that things can happen, so I can be like that on the one hand, but on the other hand.
11:57:42 I'm… my mind will literally tell me, like, oh, well, you already have a disability, so, like, nothing else is gonna happen, like, you're fine. Like, you've had your thing, so… don't worry.
11:57:53 I know, I would… I was talking to someone at. Go in the community as well, and she anecdotally.
11:57:59 Did you mention, like, oh, I knew. Who had cerebral palsy, which is what I have.
11:58:05 But then, something random happened where she, like, fell off a cliff, or something.
11:58:10 Got a spinal cord injury in addition to. Is this cerebral palsy? And I was like.
11:58:13 Oh my gosh!
11:58:16 Can you tell me that? Like, hey, here's an issue!
11:58:20 What are the odds?
11:58:24 Happens to you, you're like, okay. To me, and then when something else.
11:58:29 You're like, wait, I was already at the quota!
11:58:33 Yes, it really feels like that. Like, my brain… Like, actually tells me that that's how it works, too. Like.
11:58:40 I will read a news article about something, like someone getting in a car crash or something, and I'm like, oh, well, that'll never happen to me, because I already have my thing, and then I'm like, no!
11:58:52 Good, thank you! My delusion, because I.
11:58:50 That's incorrect.
11:58:57 Every day, and I was like, well, like, I don't. Like, the worst thing that could ever happen to me happened to me at birth of the.
11:59:06 And I was like, wait, what's happening? My tragedy, like, hello?
11:59:10 If you have more things can happen. I think it's our brain trying to protect.
11:59:15 Ourselves. Like… comforting us, maybe. Be like, oh, nothing's gonna happen. Like, it's like a trauma response type of thing.
11:59:23 Yeah, but unfortunately, the universe continues to have shenanigans. So you're never free.
11:59:29 Yes, you never know what life is gonna throw at you.
11:59:33 I know. Yeah, and I just feel like… It goes back to disability representation in media.
11:59:42 Two-word disability is presented as, like, this life-altering tragedy, but then it's like.
11:59:46 Okay, but what do you do the next day? Like, what about all the days after that, you know?
11:59:51 You have to live your life. I mean, that's why when people make comments about, like.
11:59:56 I could never live like this, or if I were like that, I would rather just pass away. It's like… That's not true. Like, they might think that, they're being dramatic.
12:00:07 They might think that, but that is not true, like… It's not.
12:00:14 Posted a little video on YouTube in her… Interviewing my friend and just, like, joking around being disabled, and what if…
12:00:22 One of… someone ran. That, like, she didn't know who followed her, commented…
12:00:26 I wish there were ways to humanely end suffering. If this were me, I would just die on the spot.
12:00:33 And she, like, screenshotted it. Send it to me, like, surrounded by flowers, like, she just googled on it.
12:00:43 People are so weird! Like, why would you say that?
12:00:46 This stuff, people say. It's also, like. I always react to that, where I'm kind of like, that's kind of an embarrassing thing to admit, like, you're just saying you have, like, no coping skills at all, like, you have no resiliency.
12:00:57 Like, where's your resiliency? Like… But I know that the thing is, like, they're just saying it, it's not true. If something happened to them, they would…
12:01:05 End up finding ways to live their life.
12:01:08 Yeah, everyone adapts to it. Basically, as much as you can.
12:01:13 It's a natural thing humans do. I actually made a video on this the other day, where I said, like.
12:01:17 Humans' ability to adapt is actually amazing, like, we have such a natural ability to adapt.
12:01:23 And people don't really think about that, or, like, give humans credit for that. Like, it was on a video I posted of me showing how I put on my deodorant.
12:01:32 Because since I can't move one hand, I get that question a lot.
12:01:35 And I talked about, like, the design of the deodorant bottle and, like, what worked and what didn't.
12:01:41 And someone was like, you know, people with disabilities are honestly so amazing, like, they don't get enough.
12:01:47 Credit for how they figure out how to do things. And I replied to that comment.
12:01:53 And I was like, no hate to this person, they didn't do anything wrong, but what people don't realize is, like.
12:01:59 We adapt. Like, and it's just funny, it's on a video of me putting on deodorant, too, like, such a mundane task.
12:02:05 Like, it's… it's just like, I'm trying not to stink, like, it's not like I'm… Everest, hello!
12:02:12 There were actually a lot of comments on that video, and they were funny.
12:02:15 But they were, like, people at my school have no excuse and stuff like that. Which, like.
12:02:21 It's sort of, like, saying, like. I don't know, I guess it sort of goes down the path of, like, oh, this disabled person has it so tough.
12:02:29 But it was a funny joke.
12:02:32 Yeah, I like it if people are gonna. Up to things, I like it if they at least say it in the context of making fun of themselves.
12:02:40 Yeah, like, a silly, like, you know, it's pretty harmless in that regard, so… But yeah, it's funny.
12:02:43 Yeah. Also, on a lot of your videos, you say no advice.
12:02:51 Did you want to talk about that some?
12:02:53 I would love to. Yeah, so I… as I've gotten older.
12:02:59 I think I've realized that when I first started social media, so I was… I was 18.
12:03:04 Um, I maybe shared more than I would be comfortable sharing now.
12:03:09 And I think that's because I didn't have as big of an audience.
12:03:15 And I was younger, and just, like, didn't really care. So now I approach my content differently, where I approach it from a way of, like, I'm sharing what I want to share.
12:03:25 I don't need to justify anything to anyone. And I know what works best for me as a disabled person who's been living with this disability for over 15 years. What I always say is I know my body access needs and preferences better than anybody else, especially strangers on the internet.
12:03:45 Um, and I've started adopting this because I would just get so many comments.
12:03:49 With unsolicited advice, and it would be the most ridiculous things ever. Like, on the deodorant video, for example, even though that video had the no advice please text on it.
12:03:59 Somebody commented and was like, I wonder if you'd be a good candidate for removal of the sweat glands.
12:04:08 Just ridiculous things like that. And I know that I don't have to respond to any of them.
12:04:12 But when it's filling up your entire comment section, it makes posting not really fun for me.
12:04:20 And so I decided I would set that boundary, and it actually works. Like.
12:04:24 What's funny is now, if people comment advice, a lot of my followers will reply to that comment and be like, she requests no advice, and they'll, like, stick up for me.
12:04:33 Um, so I've started doing that, and I think it's something a lot of people should consider having a boundary for, like.
12:04:38 Both in person and online, like, we do not owe our medical information to anyone, we don't owe our diagnosis to anyone, we don't owe them… any information like that. We don't have to justify things to anyone.
12:04:53 Yeah, and there's a good. Find her, because I feel… People with disabilities.
12:04:59 There's often that pressure to be like, wolfs. Interacted with, like, a disabled person before. Not true! Or…
12:05:09 Not true.
12:05:11 Up here before, you know, whatever, so they. Monolith and the representative for all wheelchair users, or all people with.
12:05:21 Paralysis, or whatever it may be.
12:05:23 Mm-hmm, yeah, when they say they've never interacted with a disabled person, it's so not true. Like, people don't realize how many people have.
12:05:32 Disabilities, for one thing. Um… But yeah, I… I like to do it to set…
12:05:40 That expectation, like, for my followers, and. To model boundary setting for my followers, and I've had a lot of my followers say that it's helped them.
12:05:51 Like, realize they don't have to justify, like, their choices. Or, like, how they do things to anybody, which has been my goal. Um…
12:06:02 And another thing a lot of people don't realize is… A lot of questions can come across as advice.
12:06:08 Like, asking, like, what I got the other week, have you ever considered doing physical therapy?
12:06:14 Like, it's a question… But to me, it still comes across as advice, because if they were assuming that I had done that, they wouldn't be asking.
12:06:24 If I'd consider doing it. So it's like this indirect suggestion. So that's what a lot of people don't understand, too, is that a lot of questions like that basically are implying.
12:06:33 Ridiculous advice.
12:06:37 Yeah, and it… Suddenly, everyone on the internet becomes an expert!
12:06:45 In whatever, whatever you're posting about, so suddenly everyone's like a physical therapist or an occupational therapist, or, like, a sweat.
12:06:56 Land removal special.
12:06:53 Yes. Yeah, everyone thinks they know something. When, like, my condition I have is incredibly complex.
12:07:04 Like, I barely understand what I understand about it, like, I'm able to explain it, but it's very complicated.
12:07:12 Like, a lot of people on my social media, they don't… they don't even know the difference between the spine and the spinal cord, things like that. Like, so… If you can't explain, like, these basic things related to my condition, then you should not be giving me…
12:07:26 Any advice? At all.
12:07:28 Yes, please and thank you, please exit!
12:07:33 Yes, so, yeah, I mean, I like having that boundary set. It makes a lot of people mad.
12:07:37 I will say, I do get some crap for that occasionally in my comment sections, but… Um, for the most part, I've gotten a lot of good feedback on it. A lot of people say it's really helpful.
12:07:50 Yeah, and I feel like it's a good ex… example, especially for younger people, that just because you're…
12:07:56 Sharing aspects of your life on social media, it doesn't… mean that everybody has permission to take a microscoped to your life based on their own personal preferences and biases?
12:08:04 Yes. Yes, and, like, especially given how…
12:08:11 Unique My Disability presentation is, like, it's really not very common.
12:08:14 To see someone like me who can walk, like, I can walk, but I can't move certain parts of my arms. Like, that is so unusual.
12:08:22 So, I'm like, nobody really knows any good suggestions for me, I promise.
12:08:29 Yeah, because… You know, like, even… even within your condition, and people…
12:08:36 Like, even our founder, Tiffany, was saying, like, when I first started diversability, I didn't understand.
12:08:49 Mm-hmm.
12:08:43 Like, how diverse cerebral palsy can be, because cerebral palsy can be anything. I have friends… I have friends who, it's barely visible, they only have a slight limp, I have other friends who.
12:08:56 Can't talk, I have other friends who have. Cubes, and we all have cerebral palsies!
12:09:01 It's so different, yeah.
12:09:03 No, it just goes to show that even, like. Within the disability, there are so many different… Manifestations.
12:09:10 Yes, yeah, with one… within one specific condition, like you said, even, and a lot of people don't know that, because, again, back to, like, representation of things, like, it's often portrayed.
12:09:15 Yeah.
12:09:22 In one specific way for each condition.
12:09:26 It's also like, oh, now you're disabled, all you can do is pray for death, and it's like, well, but what if… What if I want to live?
12:09:35 Yeah. But meanwhile, a lot of these people don't bother doing anything to make it easier for us to live our lives, either.
12:09:43 Yeah, and… and then you. You get people, people in power like Governor Abbott, where they have their own wealth, and.
12:09:51 Privilege, and they just don't care about anyone else in the community, which is… irritated, to say the least.
12:09:57 Hm? Yeah, I mean, honestly, there's some…
12:10:04 Simple things that everyday people could do. To make our lives easier, like, I get that question a lot, like, what can I do to help? And I'm like, it's…
12:10:12 Simple things, like, if you're out and about, and you see, like, an accessible door button that's broken at a business, like, maybe telling, like, the business owner if you can.
12:10:21 If you know a way to report it. Or, like… just, like, you know, spotting inaccessibility and reporting it, if you can, when you see it.
12:10:29 Like, or even just… I tell people just thinking about disability if you can, because.
12:10:34 Once you start, like, approaching the world from this place of.
12:10:40 Inaccessibility and accessibility, you can't unsee things. Like, everywhere you go, you see it.
12:10:46 So I always tell people, just try to start thinking about it, and you won't be able to stop.
12:10:51 And then it can kind of help you notice things, and then maybe make a difference, like, you know, for example, if you're… Um, working a job where something important comes up in a meeting, like, you can…
12:11:03 Raise a concern about, like, an event you're putting on, and say, hey, we should have this event, like, at a wheelchair accessible venue, or, you know… Things like that. Like, there's these things that everyday people can do, and I think they don't realize how impactful that is.
12:11:17 Yeah, and I… I think… reinforcing that everyday advocacy is so, so important, because so often people.
12:11:25 Conceive of activism as, like, a life devotion thing where you have to, like.
12:11:29 Yeah.
12:11:31 Give every single waking hour to the cause. And in real life, that's not usually how activism plays out.
12:11:38 That's such a good point. Like, a lot of people, basically, I guess they see it as, like.
12:11:44 You have to become, like, the Judy human, or else… anything you do is useless, and that's so not true.
12:11:51 Yeah, and it's like… It's like, you don't have.
12:11:56 Make some… you can care about. Other… other people and multiple other groups without, like, devoting your life to it or making it your whole…
12:12:05 Identity. Like, it's… It's sweet if you're motivated to devote your whole life.
12:12:06 Yes.
12:12:10 Purpose to disable people, and like, we need all the… Hope we can get, but you can also just, like, hold open doors!
12:12:17 For people! They're like…
12:12:18 Yes! Yes, literally just, like, navigating the world with empathy. I was just gonna say that, like.
12:12:24 Doing things the right way when that opportunity arises, like. Opening doors for people, if it makes sense, holding a door for somebody if it makes sense.
12:12:35 Helping somebody pick something up off the ground, if that seems appropriate. Like, offering somebody help if it seems appropriate, and respecting their answer that you get back, like… All those things make such a difference.
12:12:49 Yeah, exactly, and I. So, once people come.
12:12:54 To the realization that they… I can help disabled people in their lives while they're going about their own lives.
12:13:03 Then, inclusion and advocacy seems like. Much less of a daunting task.
12:13:09 Incorporate.
12:13:08 Hmm? Yeah, it doesn't have to be, like, you're becoming some big advocate or activist. It can just be listening and, like, navigating the world with an empathetic mindset, like I said, so…
12:13:22 Yeah, exactly, exactly, and… You see, on the subject of activism, how do you see your own.
12:13:30 Content, your own advocacy expanding from here.
12:13:33 Ooh, I love that question. Well, I… I feel like I'm in a good spot right now, because I graduated college last year, so I've been out of college for, like, a year and a half, so I've had.
12:13:42 Way more time to focus on these things, because, like, while I was in college, a lot of what I wanted to post about had to do with being a disabled college student, and that was really fun and really impactful.
12:13:55 Um, and I still talk about those things. But I've been focusing a lot on, um, YouTube recently.
12:14:02 So, I've been trying to post, like, longer videos. Because a lot of people, they've been asking me to post about certain topics, or I get requests for things, so…
12:14:12 Been trying to do a lot of YouTube, so I mainly do my YouTube, TikTok, and Instagram.
12:14:16 I'm gonna keep up with those things. I am really trying to build out my speaking and consulting, so, um, I do consulting for, like, individuals and businesses. I've done both.
12:14:28 And then speaking engagements for, like. Companies, um, schools, college clubs. I'm still continuing to do that.
12:14:37 And really just dedicating my time to that. I do have a project I'm working on. I don't want to say what it is yet.
12:14:45 Because it's very much still in the works. But I am trying to build out my own little project that people eventually know about, hopefully not too long from now, maybe in a few months.
12:14:58 So I have some personal goals. And that's exciting, because it gives me something to work towards, something to fill my time.
12:15:06 And I am actually writing my fourth book. I've been working on it for so long. I keep, like, writing it and leaving and coming back to it and changing things.
12:15:16 Because I've become, like, too much of a perfectionist with it.
12:15:20 But I am working on that, so hopefully, maybe in the next couple years, that would come out, too.
12:15:26 Ooh, look at you! You've got a lot of… things you're juggling.
12:15:30 It's a lot… it's really nice, though, like, I love that I can kind of, like, build my own schedule.
12:15:37 And I'm very thankful for that. That's… So nice to have that freedom, because I really value, like, being able to spend time with people, and, like.
12:15:45 See friends, things like that, so I like that I can.
12:15:49 Prioritize what's important to me. Um, and actually, I forgot, I am trying to do.
12:15:55 My very first virtual training session on self-advocacy. It's something I've been thinking about doing for, like, a year now.
12:16:04 And didn't really know how to go about it. But I'm gonna try to hopefully offer that within the next month or two.
12:16:10 Because I have a little, um… like, community chat on my Instagram with some of my followers.
12:16:18 And I did a poll and asked if people would be interested, and I got, like, 40 people who said yes. So, I'm like, okay, that's a good… response, so I'm gonna maybe start doing some virtual training sessions, like start with this one, maybe do, like.
12:16:30 I don't know, for a year? Or something like that? I think that'd be fun.
12:16:35 Yeah, that's a good move, and also, I can help you.
12:16:40 Promote those within the DLC, and. Diversability as well. We can advocate.
12:16:43 I would love that.
12:16:48 For you definitely are, like, posted on. Instagram or something.
12:16:52 Yes, that would be amazing. I'll send you the details when it's finalized.
12:16:55 Yes! Yeah, because I… People need to realize that advocacy does start with yourself, and it does.
12:17:03 Start with raising your own voice.
12:17:03 Yes, and people ask me all the time questions, like, this is what inspired me to do this, is… People ask me questions all the time, like, how are you so confident asking for help? Or, like, how did you get comfortable asking for help?
12:17:19 How do you not feel guilty asking for help? So I want to address all those things, and give people just…
12:17:27 Some insight into maybe why we feel the feelings we do around asking for help, like, where that comes from, and like.
12:17:34 How we can deconstruct it. And provide people with some…
12:17:39 Pointers for how to develop, like, scripts they can use to.
12:17:43 Effectively self-advocate, so… That's the plan.
12:17:49 Yeah, I've… Guilt, especially, is an issue, like.
12:17:53 Even if you're paying someone as your caregiver, I know from my experience, I still… feel a lot of guilt of being like, oh, I shouldn't be asking.
12:18:02 For this, or asking for this is annoying, and then I'm like, but I'm… To give me a service. So why do I feel that?
12:18:09 You're literally paying them. I actually posted a video on this, like, yesterday, maybe?
12:18:12 Yeah!
12:18:15 Um, on TikTok, where I made this comparison. Of, like, you know, you're at the hair salon, you're literally paying this person a lot of money to do your hair.
12:18:27 And you may not like it, but, like, it's awkward to say something, and you've literally paid them for a service.
12:18:33 Or, like, if you're at a restaurant. And you've paid for your food, and they bring you, like, the wrong side or something, but, like, you don't really want to say something because it's awkward or, like, embarrassing, or you don't want to make them feel bad.
12:18:44 And then I was like, imagine, like, being disabled and you have to deal with this every day. Like, you maybe don't like the way your caregiver or friend or family member did your hair.
12:18:53 But you don't really want to say something because they're helping you.
12:18:55 And then I was like, even if you pay a caregiver, it doesn't take away this guilt, because… like I said, paid services for paid restaurant, paid hairstylist.
12:19:05 There's still that guilt of, like, not wanting correct people.
12:19:08 Yeah, and it's like, what if you felt that every single waking day of your entire life?
12:19:15 Yes! Every day, with multiple tasks a day, or every task a day even.
12:19:21 And it never gets to be the way you want it to be.
12:19:21 Yeah.
12:19:24 Like, that's so annoying to think about.
12:19:28 Yeah, but that's the disabled lived experience, but then people say, oh, you're being negative!
12:19:33 Yeah, or you're being too picky, or just be grateful for what you have, be grateful that you have help.
12:19:38 Which, like, yes, you can be grateful that you have somebody helping you, and also recognize that it's maybe not.
12:19:45 Exactly how you would want it. And that's valid.
12:19:49 Like, it's like, at least you're getting to live, but you're not getting to live… The way you want, so that's still kind of a downer.
12:19:56 Yes! Like… you know, maybe I would enjoy, like, being able to braid my own hair, but I know it's something I'll never be able to do. Like, my mom did this beautiful…
12:20:07 Amazing braid for me today. But it'd be cool, like, if I could.
12:20:11 Sprayed my own hair, and I just know that's something I'll never do.
12:20:15 Yeah, and you just have to make. Make peace within, find other sources of…
12:20:22 In your life, because those are the kind of psychological adaptations that we make every day.
12:20:27 Yeah, you just have to be like, well, you know, like, this is where I try to reframe, and I'm like, well.
12:20:33 I think it's really, like, sweet that my mom and I have gotten, like, close through her helping me with things. Like, I think we have a closer mom-daughter relationship.
12:20:43 Because of that. So that's where I reframe. But I do still let myself.
12:20:47 Be annoyed that, like, I can't do certain things.
12:20:52 Yeah, because I feel like. Instead of being disabled, too, is just sort of…
12:20:58 Perpetually mourning the lack of agency, even… At the same time, you can be grateful for and acknowledge all the…
12:21:06 Unexpected richness that it's brought into your life.
12:21:09 Yes. This is what I think we, you know, we're kind of going full circle here, like, to how we started, like.
12:21:16 Where people aren't great at letting us talk about the full picture.
12:21:21 Like, where it can all be true at the same time, but there's not much space for that nuance.
12:21:27 Yeah, exactly! More people need to recognize that nothing in life has to be mutually exclusive.
12:21:35 Everything exists in its complexity and depth.
12:21:33 Yes. Yes, and humans are complex people, we're complex beings.
12:21:43 So, our emotions are gonna be complex.
12:21:48 Yeah, exactly, exactly. Um… up to an hour, but did you have any…
12:21:56 To add, or any, um, sort of advice or wisdom that you wanted to share with our audience?
12:22:03 I think I would just say, like, if you're a disabled individual, and you're… you know, someone who struggles with, like, self-advocating, like, since that's something I've been thinking about recently, talking about a lot recently.
12:22:17 And maybe that's because you feel, like, bad asking for help, or you feel like you're not disabled enough for help, or… You don't want to anger people, like.
12:22:26 Remember that, like, you are entitled to access, you're entitled to, um, the resources and accessibility, because those are things you deserve.
12:22:37 And, um, I always just want to try to encourage people to be.
12:22:42 Empowered to… you know, ask for what they need, and I know it's difficult, but I like to just remind people that, that, like.
12:22:49 They deserve it. So, don't feel like you don't.
12:22:54 This is entitled to dignity and Access. That's a spectacular note to end on!
12:23:03 Well, Sarah, Todd, thank you! Thank you so much for a talk!
12:22:57 Yes. Love it.
12:23:07 Us today, and we really appreciate. Appreciate your time!
12:23:08 I loved it.
12:23:13 Let me turn off the recording! Yeah, of course! Anytime.
12:23:14 Thanks for having me.
12:23:18 Anytime that you would like. Hold on, look…
12:23:22 I literally loved this. It was such a good conversation.
12:23:26 Let me pause the recording. Can you help me? Pause it.
12:23:34 Yes! Such a great example of what we were talking about.