Answering Questions About Disability | Digital Activism

Episode Show Notes:

Hello beautiful people!

This episode is audio only (sorry!)

After I yap for a few minutes, I answer questions that I found online that relate to disability! I talk about dark humor, weird questions that people have asked me, and how I answer the “are you disabled question’ on a job application.

We will be back to video next week!

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Episode Transcript (approx.):

Hello, beautiful people. I just wanted to hop in here as I'm editing this episode and apologize that there is no video. The video quality was not great and it was choppy and just did not.

turn out good at all. I explain in the episode why I am doing it in a little bit different of a setup and why this episode is a little bit different. I promise starting next episode, we'll be back in the studio and I will hopefully have a guest. If not, the quality will be better. Again, so sorry, this episode is a little bit different and I hope you enjoy.

Hello beautiful people, welcome back to another episode of Digital Activism. We're not in the new studio space and...

That is because things have been crazy. So a few little life updates. First, last week as of recording this, my mom was really sick and we thought, or she thought it was kidney stones, because her and I both have kidney stones very badly. And that's what she'd been thought, the pain she thought she had been feeling last few weeks. And turns out it was not.

And so last Thursday, she was, was last Thursday? Nope, Thursday before. Anyway, she went to the ER for

pain. Long story short, it was her gallbladder. And so she was in the hospital for a few days. And then as of recording to today, which is Wednesday the 22nd of April, she had

her gallbladder removed, literally today. And when she heals up and she's feeling better, she is going to sit down with us and do an episode. I already talked to her. We're planning on recording one pre-surgery last night just to talk about the hospital stay, the pain, everything that she was feeling and the symptoms and where she thought it was a kidney stone and why she thought it was a kidney stone, but.

with the surgery being today and we had to get in bed early and Yesterday was busy that we decided we'd do it after she starts healing and feeling better. And we can talk about surgery and everything. So keep that in mind that will be a future episode and it will either be here or in the studio. I'm hoping to convince her to go there. Anywho. So with that, between that and then yesterday to prepared, had doctor appointments and, um,

All this different stuff and Lily, who's the producer, has been very busy and so we kind of changed up plans a little bit. So she was here earlier today and she dyed my hair purple. so I dyed it blonde yesterday and with intentions of dying it purple today and Lily did it, so that's what.

we focused on today for the most part.

So since this week I did not have a typical guest or, you know, plan really,

I did not want to leave y'all hanging with our episode because I promised myself and everyone else I was posting.

every week or try my hardest. And so it is 10 o'clock at night and we're going to record this. And so I really went online, mostly Reddit and pulled questions or advice or, you know, whatever it may be different posts relating to disability. And most of them are questions, if not all of them. And I was going to answer them. Everything I say is my opinions and my experience.

through my experiences and beliefs and my thoughts. I mean, I pulled these questions, but I haven't like sat there and thought a lot about them. So this may be the most chaotic, like follow my brain, wherever it may go, video or audio or podcast, whatever. And I'm also very tired. Was up at 3 a.m. this morning. With that being said.

Let's get into it. And there's not many. This is going to be a shorter episode, I believe. the first one is, does the dark humor hurt you or offend you? For me, it does not. You could ask any of my friends and family. I am the one making a lot of the jokes. Now, again, that is just my personal take. And if it's from a stranger and I can't tell, especially online, and I can't...

if they are joking or not joking. May hurt a little bit more, but typically, know, in my family and friends and myself, people say, you know, making jokes and laughing at stuff is the way to cope. I'm not necessarily coping with my disability. Like, I don't think there's, that's not necessarily the right terminology. It's more of making a light of or not letting it.

affect my life or I don't want to talk about it. So I make the wheelchair jokes, I make the can't walk jokes, I make the every disability joke that applies to me that I can.

I will, always want to hear an original funny joke. So if you have them, as long as they're not too mean, always feel free to let me know what they are. So yeah, in my opinion, dark humor, love it. ⁓ That's how I would say since late high school, mostly college, ⁓ I have made a lot of dark humor jokes on social media and my personal life.

Second question, what is the worst disability advice you have ever been told? Or what's a comment someone has said, things like that. There's a lot. ⁓ I would say the biggest ones that come to mind are if you pray hard enough, it'll go away. If you just exercise. ⁓ Have you tried?

this, this, or this, like Apple cider vinegar pills, or this, or again, exercise, or ⁓ all these different things that, like, if it was that simple, I would be running around right now, and this podcast would not be about disability, it'd be about something completely different, but it's not that easy. And so, it just, I don't need unsolicited advice.

from an able-bodied person who has no idea what my disability is, has no idea what my chronic illnesses are, my pain, my limitations, my anything without knowing, just assume or want to give this advice of exercise or praying or this and that. Y'all, that don't work. Trust me, trust me, it doesn't work. So don't stop me in the middle of parking lot of a grocery store.

and demand to pray with me for my disability to be healed. One, don't need to be healed. I'm perfectly content, happy wheelchair. 24 years old, I've been working on accepting my disability and myself for so long. I'm here, I'm good. I don't need to be quote unquote healed. If you want to pray for something, pray that my robot arm hurries up and gets here. Pray that society will be more...

accessible and inclusive to the disability community. Don't think that something's wrong with me. Think about how everybody else can help the disabled community and pray for that instead.

What is some advice I wish that I had gotten when I had first found out I was disabled? This one's interesting because I have been, I was diagnosed four days after I turned two, so of course I don't remember being diagnosed. I've lived my entire life disabled only knowing that and so

This one's interesting, however, I will say when I was younger, I wish I had, one, seen more people like me, disabled in general, physically disabled, wheelchair users, whatever, in the media where it's not portrayed as a super negative thing. ⁓ Just let, like, yeah, sure, I want the realism of like, yeah, some things suck, but not everything about being disabled sucks. So... ⁓

seeing myself in media or that,

Don't be insecure about your wheelchair or your body or your disability. I still struggle with that, so easier said than done, but I very much struggled like elementary school. I don't know if anybody else's elementary school was like this, but I would have to, or all students had to go into the gym before school started and wait and you were separated by like your class grade or whatever.

on the bleachers and for me, obviously I went in on the bleachers, so was in the front, I had to wear my chair, the gym floor is loud with my chair, and so I always felt very insecure to the point where a lot of times in elementary and middle school, I didn't even go to the gym. A teacher or a parapro let me stay in their classroom until it was time to start classes. ⁓ And I was just shaming my wheelchair, I did not want the attention now.

I love the attention, that's besides the point. So yeah, don't let it define you and make you self-conscious about who you are and your body. Embrace it, you know, and I know again, easier said than done, especially when you're young and everybody, other students do not know what disability is or has never seen a wheelchair or a walk or crutches or... ⁓

hearing aids or anything like any mobility device or physical disability or invisible disability. They don't know what that is. Especially if it's invisible. They don't know that you might need to go see the nurse or need extra time with ABCD or whatever it may be. And so yeah, so always embrace your disability and advocate for what you need. not.

try to hide it or do without just because you're embarrassed. I know, said this a million times, easier said than done, but work on that from a very young age so hopefully it gets easier as you get older.

So this one was very interesting. I had not thought of this until I read this comment. And it was, do you put, yes, I have a disability or identify as having a disability on job applications? So it's a part of a optional survey. You do not have to answer it. It's the same as veteran status, I believe. ⁓ And so you don't have to.

put anything, so you never feel like you have to. But apparently, and again, didn't think about this, a lot of people don't because they are discriminated against or just dismissed before they're even given a chance for an interview. And I was reading different things that said that they quit putting that they have a disability and they started receiving callbacks. When before, when they would put they have one, it was like radio silence for weeks, months, however long. And I hadn't thought about that.

I obviously my, my disability is very much a visible physical disability. You can see the wheelchair and when I have a job or in school, whatever it may be, I need accommodations and so, and access to things. So it's not that I could even hide it even if I wanted to. However, they make a good point of if you don't put that on your res on your application,

then you have a chance to get in front of them and show your experience and your expertise and your motivation and your interest before they see disability and discount you. Not that they should, but people do. And so if you get a chance to get in front of them before, then that will hopefully override the disability side of things.

That brings me to a whole other point of reasonable accommodations, which is under the ADA law. And that is enhanced on a financial burden or anything out of the question for employers or businesses or whatever they have to provide it. But that is so vague and up to so much interpretation that they can get away with a lot of stuff. One of those being not hiring disabled individuals. And I can go on that tangent forever and ever and ever.

It's something that I have found myself very passionate about after being in college and having to advocate and fight for accessibility and things on a college campus. had to quickly realize that people would say that a lot of things are not a reasonable accommodation or they are a financial burden or however they want to classify it, but there's no strict rules or laws on that.

So yeah, maybe that's another topic I'll talk about later, I'm not gonna say whether or not to put if you have a disability or not. I always have, but I'm curious if in the future, if I shouldn't, and do my own little experiment and see what happens. I'm very intrigued by that. Another question I've seen was, do you prefer having a...

a member or a friend being a caregiver or a complete third party that you do not know. And I think there's give and take to both. or pros and cons of both rather. So for a fan member, obviously they know your disability, they know you and are comfortable, you know them and are comfortable and it gets very vulnerable. Bathing, changing clothes, bathroom.

personal hygiene, all of the things they are having to do for you and help you with, depending on your disability and what level of mobility you have. And so for me, I need all of those things. it is difficult when it's a stranger because that's a lot of vulnerable trust you're giving onto them. And the first time you meet them might be an hour before they help you shower. Like it really, it's...

It's a very vulnerable place to be. so that's difficult, but on the plus side, it is a good thing because, you know, you don't have to feel, I know a lot of times my family, feel bad for asking for help on certain things or I feel like a burden, you know, whatever it may be. But if it's a caregiver, a third party caregiver, that is their entire job. And so I almost feel like it's...

They are not your family member or your friend. They work for you in a way and that it feels more natural to ask them for help or get them to do something for you and not feel like you're bugging them over and over and over. As with a family member, they just maybe live in a house with you or near you you're like, oh, can you do this, this or this? And also if they're a caregiver, a third party caregiver, they're

That's their job. They applied for it. They you know in some cases went to school for it. They trained for it So like that is their job and career and life On the other hand with a family member or a friend They didn't necessarily You know apply for this job or or anything like that so like they may want to be working other jobs but to have other interests or passions or

or stuff they want to do, but they feel what they need to help you. And I'm not talking about little things. I'm talking about like being with you the 12 or 24 hours a day and bathing, eating, bathroom, personal hygiene, everything. Like that's a lot for anybody, but especially when it's not something that they had planned on it being their career, life, job, whatever. They'll often do it, but they might not necessarily want to do it and they can get burnt out.

You also risk the bridges and the relationship being burned and that's your family or your friends. So you gotta be really careful. As a third party caregiver, that is someone who works for you. So one, it's their job and they're trained and oftentimes family members aren't, but also you can have that friendly relationship, but you also can place more set in stone boundaries.

Now on the flip side, it can be harder for it to be a third party caregiver because in my case, I live in a rural area. And so the closest place that my insurance covers for a caregiving agency is an hour away and the government doesn't pay you with a shit. Like caregiver gets, I don't know, at least in the program I have $12 an hour, six to eight hours a day, seven days a week.

one to two different caregivers, don't pay for gas, they don't pay for a vehicle, they don't pay for maintenance, they don't pay anything really. And so like, is that worth it to drive an hour plus or even less away seven days a week both ways? Also, if they get sick or have a family emergency or car breaks down, and again, you just have to give a lot of trust. I've had a caregiver steal my medicine. These are both third party individuals.

One stole my medicine and the other has some personal stuff going on and just wouldn't show up a lot of times. And so then I was left without a caregiver unexpectedly. And then one went MIA and again was left without a caregiver. So in that sense, it's easier to have a family member or a friend. there are ways to have your insurance use one of those companies.

but your family member, whoever can get hired through them and fill out the paperwork and they can get paid to do it. So that does help a little bit. Currently, my mom does that and my parents own their own business. my mom does most, she will go with dad sometimes on the construction business. But a lot of the times mom's at the house, typing up contracts or whatever it may be, or doing a lot of the secretary type stuff.

And so she's around anyway and she's available. So she wants to get paid for helping me out. It makes total sense. And if I need, if she's sick or in this case had surgery and somebody else needs to care for me or maybe my parents going on vacation and my brothers or aunts or somebody else or a friend needs to care for me, they can get paid because instead of my mom getting paid, she'll just.

send it on over to whoever's helping me.

is the weirdest thing I have been asked about my disability? So, there's so many questions. Have you, I'm sure there's like the actually weird questions. I get a lot of invasive questions, but I personally do not mind answering questions. I actually love answering questions. That is not the case for all disabled individuals. So if someone says they don't to say or answer a question, do not pressure them to.

I usually answer a question, I'm also okay with saying I'm not answering that. In middle school I was asked how I use the bathroom by a student who blocked me from leaving the classroom until I answered. I've had, can I drive your wheelchair? Can I ride your wheelchair? Can I push your wheelchair? ⁓ I try to help you stand? Can you have sex? Can you ⁓ even have a relationship?

Can you drive? Which that's not that crazy a question. I got approved to drive, I don't drive, don't feel safe doing it. But like all these questions are sometimes so out there. And some of them are just invasive, not everybody wants to answer those. I post on social media in a way where I advocate and like encourage questions as long as they're respectful. But I'm also, again, okay with saying I'm not answering that or just ignoring the question.

But yeah, like if someone doesn't want to answer something, don't force them to answer it. And same goes for if you ask them if they need help and they decline. So for example, say I'm at a grocery store grabbing a bag of chips off the shelf. If somebody's like, you need help with that? And I say, no, do not do it anyway. If the disabled person needs help, they will say yes. Now I may not be the person to ask for help, but if it is

offered to me and I need it, I will say yes. But if I say no, do not do it anyway. That just makes me livid. I know I'm not the only one that feels that way. ⁓ And most disabled individuals will ask for help if needed. And so yeah, never pressure someone to let you help them. If they feel like they can be independent, let them be independent.

So yeah, those are the questions that I found online or have been asked or thought of. I hope I answered them decently. Again, very little sleep, unplanned episode. And if you have any questions,

Feel free to DM me, ask in the comments, leave it wherever and I want to answer more questions. again, sorry we're not in the typical place and new setup. Thank you for being here.

I love you all and I'll to you all next week.