Disabled Lives Matter


November 19, 2021

Season 1, Episode 38
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Teresa Beard

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley… yay!

Nadine Vogel: All right, well welcome everyone, this is needing vogel your co host of disabled lives matter, as you know, it's more than a podcast it's a movement and what helps that movement is my fabulous co host norma Stanley.

NORMA STANLEY: Hello everybody.

Nadine Vogel: So norma I don't know about you, but our guest today, I first of all let me just say Teresa beard she is a writer a podcaster and a consultant from Western New York, but norma when you heard about the podcast.

Nadine Vogel: And the title of it.

Nadine Vogel: I don't know what your reaction was my was, and this, this is some cool sh--t.

NORMA STANLEY: Okay, okay.  Well that sounded very cool to me too.

Nadine Vogel: yeah so um now that we've gotten everyone to wonder well what is the name of her podcast it is sh--t that scares me.

Nadine Vogel: Some people that alone is going to be scary so welcome to teresa how are you.

Teresa Beard: I am so great Thank you so much for letting me be here, this is exciting.

Nadine Vogel: Absolutely so well you know, obviously that's the elephant in the room, so let's start with.

Nadine Vogel: What the podcast is about, and why you called it, that.

Teresa Beard: Well, so the podcast is literally about sh--t that scares me um I have been a lifelong.

Teresa Beard: fan, how you know how to fascination with things like the paranormal super supernatural like I can remember, being in first and second grade and being like obsessed with Halloween and wanting to learn about ghosts and all that good stuff so.

Teresa Beard: That has carried me through my entire life i'm you know I just turned 39 so uh.

Teresa Beard: I when I thought about starting a podcast and also because.

Teresa Beard: paranormal and supernatural podcasts are the ones that I listened to the most I started thinking about like.

Teresa Beard: All the stories that you hear on paranormal and supernatural pa podcasts and even true crime and they're all kind of the same, which you know is great, because I only have to have listen to them when i'm listening, I can multitask, but I also is kind of like well.

Teresa Beard: it's a big wide world and there's so much other scary stuff in the world, and not just like oh it's a ghost and no it's an alien but like how about.

Teresa Beard: The fact that you can go to work one day or go to school, one day, and not come home or.

Teresa Beard: You know, existing in the world as a disabled person is terrifying.

Teresa Beard: So there's all these other things, and you know how do you incorporate all of these scary things into one sort of neat package and it just became sh--t that scares me.

Nadine Vogel: So we. used to have someone at.

Nadine Vogel: springboard who used to you know, when there was a lot of crazy work, you would say you know, is the scary pile right.

Teresa Beard: yeah.

Nadine Vogel: And I think that this is something bigger now you know you mentioned that you know living in a world as someone with a disability is scarier certainly can be scary so tell us a little bit about that, and your disability.

Teresa Beard: Oh wow um so I was born with a disability, I have a birth defect called.

Teresa Beard: chiari malformation and there's a bunch of different types, I have one of the less severe types.

Teresa Beard: This is the same birth defect that causes like spina bifida if you guys know what that is um.

Teresa Beard: You know little kids being born with holes in their spines is is a more severe form of this but, like you know growing up, I wasn't actually diagnosed until I was 16 or 17 

Nadine Vogel: oh wow.

Teresa Beard:  um which is you know pretty common for this birth fact and.

Teresa Beard: My mom found out that she also has it when I was diagnosed she was in her early 40s at the time, so you know I spent the formative years of my life like.

Teresa Beard: Having these horrible migraines and falling down all the time, and all these other things that like nobody knew why so they just kind of like ignored it.

Teresa Beard: And that.

Teresa Beard: was like my I never thought of being a person who's disabled, so it was never.

Teresa Beard: I just had to find ways to exist in a world that like.

Teresa Beard: wasn't here for my particular like i'm also very short i'm four foot 11.

Teresa Beard: I haven't grown I joke, since the seventh grade so like that is part of my disability too so.

Teresa Beard: i've always existed in a world that was not meant for people like me.

Nadine Vogel: mm hmm.

Teresa Beard: And that.

Teresa Beard: has been.

Teresa Beard: I mean.

Teresa Beard: I don't know any different so it's not like I had to learn to to get along like that, but when I really think about all the things that I have to do to compensate to like work a real job and and have all the go to school and.

Teresa Beard: it's sort of staggering to me what I what I always accepted as normal that other people didn't have to deal with so.

Teresa Beard: But in addition to like this birth defect, I have it causes all these other things like chronic pain and chronic migraines and all these things that can be really debilitating.

Teresa Beard: That you know you have to fight with doctors to get them to listen to you and.

Teresa Beard: You know it's very easy for them once they find out that I have chiari for them to just blow everything else off as oh it's it's just another symptom of this illness that you've had so you're born so. yeah.

Nadine Vogel: so what would you say you wish, you know what do you want people to understand the most about.

Nadine Vogel: I would say your disability and in your disability, you know is very much invisible right unless and until it becomes visible right, so what would you say that you wish people understood about invisible disabilities, probably in general and then your specific illness. 

Teresa Beard: um. Just because I don't look sick doesn't mean i'm not, which is, I think, really common among people with invisible disabilities like but also just because i'm okay in this moment doesn't mean that an hour from now I won't be flat on my back with a migraine.

Teresa Beard: Or that.

Teresa Beard: Tomorrow i'll still be okay.

Teresa Beard: that's a big one, because.

Teresa Beard: Even our current very broken disability system struggles with that.

Teresa Beard: Because it's like I am today very functional and very capable of like working a full time job, and you know going grocery shopping and all these other things, but.

Teresa Beard: Tomorrow, a week from now, a month from now, I might not be so i'm not you know right now clinically disabled, but I also not fully functional so that's The thing that I.

Teresa Beard: want people to understand more than they currently do and it's not just like people with my illness my best friend has an illness called charcot marie tooth.

Nadine Vogel: mm hmm.

Teresa Beard: And she actually works for the national organization for cmt now and same thing if she didn't work for the nonprofit for her disability.

Teresa Beard: She would have to fight every single day to get people to take her seriously as being disabled so.

Nadine Vogel: And I think you're right those things are scary. right.

Teresa Beard: yeah.

Nadine Vogel: they're scary to hear about.

Nadine Vogel: Very scary to live with which I guess goes back to your purpose for starting the podcast like you said it's not all about ghosts and goblins right it's about real life, I mean norma you know you and I have talked about you know, having adult daughters with disabilities, you know.


Nadine Vogel: We get scared to death on a lot of things.

NORMA STANLEY: So many things.

Nadine Vogel: There's some scary crap out there for us too.

Teresa Beard: yeah and I think I mean my mom too like if she didn't have the same types of disabilities, that I do um she would just be beside herself with panic like constantly but.

Nadine Vogel. yes.

Teresa Beard:  You know, but because she has that Frame of Reference she's a little more chilled out about it, I think.

Nadine Vogel: So I'm curious and in you know, norma, you and I talk often about this balance and the balance, they always say it's not work life balance is integration.

Nadine Vogel: right but i'm curious for you Teresa as as someone with this disability that one day it is, and when they it's not kind of thing, how do you juggle job and life and projects and and not knowing what tomorrow, may be, how do you balance all of that.

Teresa Beard: um it's really freaking difficult.

Teresa Beard: Until about six months ago I worked like a standard full time job I worked for a dating APP I was extremely lucky because that job had always been remote um I started there in 2015 and was remote the whole time so.

Teresa Beard: At the time that I got that job I was just starting to figure out that I need to prioritize where my energy is spent.

Teresa Beard: And the way that I put it is like.

Teresa Beard: I start out every day with like a half tank of gas or less so I need to prioritize where that gas where that fuel goes.

Nadine Vogel:  Got it.

Teresa Beard: And, if I can cut out things like even excuse me like driving to a job, a commute takes that emotional physical fuel for me i'm getting ready in the morning, there were days when I was like I can either shower or I can start work on time.

Nadine Vogel:  Right, right.

Teresa Beard: Things that you can't really do when you have a traditional job so now.

Teresa Beard: That job got to be too much for me, because it was very demanding and very stressful and so now, I still have to prioritize where my energy goes but i'm working for myself, so that gives me a lot more flexibility.

Teresa Beard: Luckily, I have the kinds of skills that lend themselves to being self employed.

Teresa Beard: With a you know modicum of discipline that I learned from working remotely.

Teresa Beard: I can't say that I have much but.

Teresa Beard: um but also I.

Teresa Beard: out of necessity, I get groceries delivered and I.

Teresa Beard: have somebody come in and clean my house a couple times a month to do the deep clean, because if i'm spending my energy on a grocery trip or you know washing my baseboards.

Teresa Beard: i'm going to do nothing else that day 

Nadine Vogel:  Right, right.

Teresa Beard: So that's I that's been my biggest challenge to is.

Teresa Beard: relearning how to prioritize my energy.

Teresa Beard: Not just my time.

Nadine Vogel: yep well you know what's interesting about this, because I was going to ask a question Norma I often talk about like you know self care.

Nadine Vogel: Right and how to practice self care.

Nadine Vogel: And you know, certainly someone adults with disabilities folks experiencing mental health related issues.

Nadine Vogel: that's a big deal right for special needs parents like norma you know sierra is in a wheelchair, and you know sierra's amazing but The thing is, is that she relies on you right to take care of her.


Nadine Vogel: So there's this issue of self care and what I what I love hearing about what you're saying Teresa is that it's really taking a step back and understanding yourself.

Teresa Beard:  Yes.

Nadine Vogel: And accepting and embracing who you are like you said, your energy level what you can do instead of fighting it.

Nadine Vogel: and saying, I know I you know I start with half a tank but i'm just going to work as if I had a full tank, no matter what right that that's not self care so.

Nadine Vogel: It sounds to me like the way you've been successful and certainly you are successful and balance everything really has to do with your acknowledgement of how you're feeling and your self care, I could gather.

Teresa Beard: Yes 100% and it has taken so long to get to the point where i'm not like being super harsh on myself for not being able to do the same things that quote unquote normal people can do like.

Teresa Beard: I have a fiance who is amazing and wonderful, but able bodied and doesn't have health problems and whatever so I.

Teresa Beard: Even up until like four or five years ago would browbeat myself into Okay, well, I have to go to the grocery store, I have to do this.  I have to do this.

Nadine Vogel:  right.

Teresa Beard: Instead of acknowledging that my time and energy is more valuable.

Teresa Beard: Like literally and monetary more.

Teresa Beard: Valuable than being put elsewhere.

Nadine Vogel: what's your worth.

Teresa Beard: Exactly and like you know spending the extra 10 or 15 bucks to get my groceries delivered because it's really ultimately all it costs, I'm over going to the grocery store.

Nadine Vogel: I hate grocery shopping.

Nadine Vogel: Can we just say I hate grocery shopping.

Teresa Beard: I like going to the grocery store when I don't need to.

Nadine Vogel: Okay, okay.

Teresa Beard:  I love when I get to walk around.

Nadine Vogel: Like walking around with a list.

Teresa Beard: yeah yeah if I only need to like do my weekly trip.

Nadine Vogel:  Yeah.

Teresa Beard: because it's not just wandering around the store it's like getting this stuff to my car.

Teresa Beard: Unloading it when I get home, so I can.

Teresa Beard: it's worth that extra 10 or 15 bucks to me like.

NORMA STANLEY: I'm going to do the same thing I became sick, as a result of taking my daughter's wheelchair in and out of the car for 30 years and so i'm in the process of. and I. 

NORMA STANLEY: love to go shopping I love grocery shopping I love to cook and um, but I have come to the decision that I have to do the same thing I have to step back and say is a better way that I can get the same result and not put too much wear and tear on myself, because I am getting older, you know.

Nadine Vogel: Oh but you're getting better. norma

Teresa Beard: Like a fine wine Why and cheese.

Nadine Vogel: That's right exactly exactly well on that pleasant note.

Teresa Beard: acknowledging our limitations, is what it's about.

Nadine Vogel: Well, acknowledging that side to note wine cheese and really like you know thinking for dinner now.

Nadine Vogel: let's take it let's go to commercial break and then we will come back with Teresa Teresa I I have so many more questions and I asked you i'm having so much fun talking with you so everybody stay with us don't leave we'll be back in just a minute.

Voiceover:  And now it's time for a commercial break.

Have you attended a springboard Consulting event? Well, you should, we have the best events and our 2022 events are just under way. Firstly is the Brg Summit happening on Tuesday, April 26th, and then following that is Disability Matters. North America Conference and Awards that's happening Wednesday and Thursday, April, 27 and 28. Both events are being delivered by a live stream. If interested in attending, please visit www.consultspringboard.com for more information.

Voiceover:  And now back to our show.


Nadine Vogel: all right Hello everyone and welcome back to the second half of today's episode of disabled lives matter.

Nadine Vogel: norma stanley and I are having this fun conversation with Theresa beard who hosts a podcast sh--t that scares me, and you know what I totally get it now.

Nadine Vogel: Before this We weren't sure, but totally get it now so Teresa before we before we broke um you were talking about you know self care and how you juggle and manage and it's being true to yourself, but you also did say something I picked up on that it kind of took you a long time to get there.

Teresa Beard: Oh yeah.

Nadine Vogel: Right, so what advice would you give your younger self whether it's about medi you know battling some of the medical issues finding treatments or just you know honoring your time and energy for yourself, for your fiance What would you tell her.

Teresa Beard: uh honestly.

Teresa Beard: Therapy, go to therapy.

Teresa Beard: Because I part and parcel of my birth defect is mental illness primarily anxiety and depression and research is fuzzy on whether.

Teresa Beard: You have mental illness, because you have chiari or, if you have mental illness, because, like people with disabilities generally have higher rates of mental illness.

Nadine Vogel: Right 

Teresa Beard: um.

Teresa Beard: But for so decades of my life I fought and fought and fought I can do it myself I don't need therapy, I really bought into so much of the stigma that surrounds mental illness and mental health treatment and.

Teresa Beard: I was so much worse off for it, if I had.

Teresa Beard: You know started therapy at 17-18 years old, when I really started struggling I could have saved myself so much trouble and like just Teresa go to therapy it's fine.

Teresa Beard: you'll feel so much better afterwards.

Nadine Vogel: yeah no, I think, and I think people are, I think people are afraid of therapy, I think you know they feel like they're giving up you know there's all kinds of stigma.

Nadine Vogel: associated with mental illness and then you add will go to therapy or support groups and suddenly the stigma goes even further.

Teresa Beard: Yeah.

Nadine Vogel: Which is, which is a shame, because, like you said that that's what's helped.

Nadine Vogel: yeah and we know that that helps so many people, so if you meet someone new.

Nadine Vogel: we're not let's say on the scary sh--t podcast and we're not on the disabled lives matter podcasts but you know you're with friends, you know you're out, you meet someone do you talk about disability and, if so, in what scenario, or how do you talk about it.

Teresa Beard: And it kind of depends like i'm very open about it but.

Teresa Beard: Not like oh hi it's nice to meet you I also have a disability, I also you know i'm in therapy and take take medications but like.

Nadine Vogel: [Laughter]

Teresa Beard: Like honestly.

Teresa Beard: I did.

Teresa Beard: Once go on a first date and uh the guy was amazing I was super into him and I was just sort of starting my therapy journey, and you know I, for some reason, decided to lay it all out on the table for this dude.

Nadine Vogel: [Laughter]

Teresa Beard: we're still together for a year, so.

Nadine Vogel: What.

Teresa Beard: Well maybe you know.

Nadine Vogel: it wasn't that scary for him so okay.

Teresa Beard: that's no way.

Teresa Beard: He I was like yeah I you know i'm on medication and therapy whatever he goes oh cool meet too and with.


Teresa Beard: A whole thing.

Nadine Vogel: The new me too movement. 

Teresa Beard:  Right yeah yeah and like.

Nadine Vogel: The real life version.

Teresa Beard: The the transparency was really fantastic because, like first dates are so annoying i'm really glad that I haven't been on one in a really long time, but like.

Teresa Beard: I don't ever want people to feel like they're meeting my PR representative so with anybody at this point, you know if it comes up I talked about it.

Teresa Beard: You know it's it's, a thing that I am.

Teresa Beard: Very over my shame of.

Nadine Vogel: Right, right.

Teresa Beard: That shame lasted way too long about my disability my mental health, the works so i'm very, very open about it now, but not.

Nadine Vogel: Well it's interesting too, because you know, like you said, your job was remote.

Nadine Vogel: So you weren't sitting in an office in a location, with a lot of other people and Norma I you know we talked to folks all the time that work in corporations or.

Nadine Vogel: or in a retail environment and they're surrounded by people and they go through this issue of.

Nadine Vogel: Do I disclose do I not disclose what do I say, is it hurtful is it helpful and that alone creates all kinds of anxiety. 

Teresa Beard:  Yeah.

Nadine Vogel: If you will, right and it just in my opinion, just takes it to a whole nother level so.

Teresa Beard:  Yeah.

Nadine Vogel: I just.

Nadine Vogel: I love how you've just come to terms but not come to terms in terms of a why me come to terms with this just who I am i'm still going to be the best and successful and do all these crazy wild things it's just who I am.

Teresa Beard: yeah.

Teresa Beard: Well, and it's funny that you mentioned work because I got insanely lucky with my.

Teresa Beard: Previous job, the people that I worked with my management, because we all.

Teresa Beard: We worked in an industry that is very niche and can be very stressful our primary responsibilities were like keeping people on our website safe.

Teresa Beard: From scammers.

Teresa Beard: or criminals or.

Teresa Beard: Some of the darker aspects of online dating.

Teresa Beard: And we joke that we're just a bunch of like introverted weirdos trying to do good in the world, and so there were a lot of people like me they were other disabled people.

Teresa Beard: There were.

Teresa Beard: people with mental health challenges people you know my manager for six years, almost has chronic fatigue and used to work in like high powered corporate jobs, he was a CEO and all the stuff that he got sick and ended up.

Teresa Beard: joining this company and working in his capacity that he could would CFS and it just I was so lucky to be surrounded by.

Teresa Beard: Other people with the same kinds of challenges.

Nadine Vogel:  Yeah.  

Teresa Beard: And I think that if I hadn't and if they hadn't been so open about it, it I would be in a very different place in my my journey now.

NORMA STANLEY: able to find your tribe.

Teresa Beard: Yes, and so so randomly because we had people on the west coast people in Texas my manager with CFS is in Canada, like all these people from all over the US and Canada coming together totally randomly like.

Teresa Beard: How my.

Teresa Beard: former director put together this team, I will never understand.

Teresa Beard: Because we just they were very much my tribe and very much still our other some of my closest friends, you know we don't talk every day anymore.

Nadine Vogel: That's great.


Nadine Vogel: so if we continue on the scary.thing.

Nadine Vogel: what's the scariest thing ever happened to you.

Teresa Beard: Oh i'm.

Teresa Beard: crap.

Teresa Beard: Honestly uh some of the situations, I found myself in in my younger days when I was online dating.

Teresa Beard: were absolutely terrifying and I was like a series of very stupid decisions on my part that led to some very scary situations, which is part of why I was so passionate about the job that I then did later.

Teresa Beard: i'm trying to prevent those same situations from happening to other people um the scariest situations that i've ever been in in my life have always been with other humans and never with you know go Sir aliens do scare the crap out of me.

Teresa Beard: But i've never met one.

Nadine Vogel: You gotta see right here.  yeah.

Teresa Beard: I don't know what it is about aliens man that's, just like the we I think we all have our like paranormal thing that like we don't want to talk about because it's just scary.

Nadine Vogel: Right. right.

Teresa Beard: For me it's aliens.

Nadine Vogel: No, I hear you and you know it's It is interesting, because I do just my personal opinion, and this is it you know I get teased a lot about this, my husband, I had been together since we were 14 years old, when I talk about dating you know people like yeah, what do you know.

Nadine Vogel: yeah right I you know, but when I when I think about online dating and both my daughters.

Nadine Vogel: date from online it just that scares the bejesus out of.

NORMA STANLEY: you and me both.

Nadine Vogel: yeah and.

Nadine Vogel: Adding with my older daughter, in particular, her disability.

Nadine Vogel: It really scares the crap out of me.

Nadine Vogel: And you know it just It just seems to be the way everybody does it these days.

Teresa Beard: yeah and it's a it's an interesting thing because I was 18-19 years old at the real dawn of the whole online dating thing in the early 2000s.

Teresa Beard: And like that's how I have always met my partners and, like my now ex husband and all my significant relationships have been people that I met online.

Teresa Beard: And for me, I am also really good at sussing out who is.

Teresa Beard: not great.

Teresa Beard: From like photos and.

Teresa Beard: essays and stuff like.

Teresa Beard: Especially now, after being you know elbows deep.

Teresa Beard: In that world for six years, but to me it was always like online shopping like you can go on Amazon and put in all these filters and.

Teresa Beard: You know these websites will spit out your options for who you can date that's I never got the same kind of sense about people that I met in real life that I did with people that I met on the internet.

Nadine Vogel: interesting.

NORMA STANLEY: i'll probably have to get some some tips from you about how to date online.

NORMA STANLEY: You know i'm just one of those people that if I had to go online, I may never date again in life.

NORMA STANLEY: Just can't I can't see it I can't see it but.

Teresa Beard: it's it's like I mean like i've been you know people have tried to pick me up in bars and whatever has happened to everybody, but like.

Teresa Beard: It like that was always the thing that I found so unbelievably sketchy like the thing that always freaked me out the most was like you'd walk into a public place and some dude would be.

Teresa Beard: up on you like wanting to.

Teresa Beard: get your number and i'm like who are you i'm trying to have a drink with my friend, can you please leave like.

Nadine Vogel: Right I know, I just it's true it's true again I wasn't in that world, so yeah okay.  

Teresa Beard:  yeah.

Nadine Vogel: It still scares the bejesus out of me.

Teresa Beard: It scares my mom too like you know, especially before I started working in online dating my mom would be like, are you out of your mind you met someone on the internet.

Nadine Vogel: Right, right.

Nadine Vogel: Well, I have my girls put on what is it it's like the find my phone says, I like I can see where they are and know where they are it's not now like creepy like i'm not following around all the time, but if they go out like I just kind of want to know some stuff.

Teresa Beard:  Yeah.

Nadine Vogel: So I can you know if anything happens, but anyway, I you know this has been amazing amazing interview I am just in love with you this.

Nadine Vogel: I could talk to you all day, unfortunately, we are out of time, so one last question, I would love to ask and norma you may have one as well, I would just like to know what do you consider your superpower, because I think you have a lot, but I want to hear what you think.

Teresa Beard: What my current superpower is.

Teresa Beard: is I think i'm easy to talk to people find me very easy to talk to, and like all.

Teresa Beard: That yeah all facets of my life so.

Nadine Vogel: Okay norma I think that's definitely a superpower of her yeah.

NORMA STANLEY: yeah definitely definitely I would ask you question, it would be on online dating and what was the one tip that you would give someone who has never done it and may want to do it.

Teresa Beard: Be vigilant.

Teresa Beard: And if you get a feeling that something is not right, it probably isn't do not ignore it, listen to your intuition.

Teresa Beard: If if if somebody is telling you one thing one day and something else the next day there's a problem RUN don't listen ferrexpo nation just run.

Nadine Vogel: This run and if you, and if you if you use a wheelchair. Wheel really fast.

Teresa Beard: Yes, really quickly.

Nadine Vogel: Well, on that note, I just want to say.

Nadine Vogel: Thank you once again Teresa This is just lovely speaking with you.

Teresa Beard: Yes, you too Thank you so much for having me.

Nadine Vogel: And I you know I know that our listeners enjoyed this today, and although the name of your podcast once again for people to listen is sh--t that scares me, I think that you do anything but scare people.

Nadine Vogel: Just fabulous to thank you and for our listeners, this was another episode of disabled lives matter more than a podcast it's a movement norma.

Nadine Vogel: Thank you dear.

NORMA STANLEY: We thank you, you are lovely all the wonderful guests we keep getting so stay tuned we have a lot more coming.

Nadine Vogel: Absolutely take care, everybody bye bye.

Teresa Beard:  Bye.



Closing comment:  [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday.  Have a great week!

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