[00:00:00] Speaker A: Foreign welcome to Disability Empowerment now season four. I'm your host, Keith Murphy Dinsini. Today I'm talking to Jennifer Gadsner, the author of My Unexpected Life, Finding Balance Beyond My Diagnosis.
Jennifer, welcome to the program.
[00:00:44] Speaker B: Thank you, Keith.
I'm so excited to be here.
[00:00:50] Speaker A: So let's dive in. What would the motivation be behind this book?
And let's start there with the title.
[00:01:10] Speaker B: Well, my unexpected life can be taken a couple of different ways. I feel like it's unexpected because it's just. Just something I didn't necessarily think would ever happen to me as young person.
I was diagnosed when I was 17 and. But it can also be unexpected in that that the.
It's the word I'm looking forward to escape. The expectations of people with disabilities are generally low.
So a lot of the things I did not to be, you know, get to call or braggy about it, but are probably things that most people do not expect from people with disabilities.
[00:02:29] Speaker A: Such as?
[00:02:32] Speaker B: Such as going to college, going to graduate school, working full time, driving, having a relationship.
[00:02:49] Speaker A: So basically the stuff that temporarily able bodied people do and partake in are not really expected of people with disabilities.
[00:03:15] Speaker B: Yes.
[00:03:16] Speaker A: So how did you come upon the motivation to write a memoir?
[00:03:31] Speaker B: Well, I had always thought to myself that I, I'd like to write a book one day and it just seemed like a really daunting task to do while I was working full time.
So 10 years ago I had to stop working because of my health issues.
And then I thought, well, I've been saying I haven't had time because I'm working now, I'm not working, so I'm gonna give this writing thing a try.
[00:04:23] Speaker A: So what would you like chronic your life with such frankness.
[00:04:42] Speaker B: It was really interesting and kind of really empowering and a little embarrassing if I'm honest.
But at the same time I had to keep in mind like if I would have had something like this telling me other somebody else had gone through something similar, it probably would have decrease my own shame and my feeling of aloneness.
[00:05:31] Speaker A: Yeah, alone it's in loneliness in general is a big topic. Really should be bigger in the times we're living in the loneliness. I could academic.
It's very profound in regions across all age ranges.
You dedicate this memoir to your hero, but you don't say who the hero is. Is leads not in the dedication.
[00:06:22] Speaker B: Correct. I don't.
[00:06:25] Speaker A: Was that intentional?
[00:06:30] Speaker B: Yes. And yes, I would say it was because I, I wanted it to be open to interpretation.
[00:06:46] Speaker A: Well, it certainly is.
That hero could be your Dog or your fiance.
I mean, that's the whole gambit right there.
It's like. And it's one of the third things you see in the book.
And it's like, so let's dive in. And for those who haven't yet read the book, what diagnosis did you find Balance beyond.
[00:07:33] Speaker B: So it's called Friedrich's ataxia.
It's a rare disease, and it's.
To make it easy and relatable for other people to describe in. Especially in the 90s, was it's a form of muscular dystrophy.
[00:08:05] Speaker A: Okay. Okay. And so how would the adaptive process of getting diagnosed in living or beginning to live with that diagnosis?
[00:08:29] Speaker B: Well.
Oh, if I can kind of go back to the low expectations of people with disabilities.
[00:08:40] Speaker A: Yep.
[00:08:41] Speaker B: I definitely fell into that group. That was kind of how I was socialized early on in Life.
So by 1990, when I was diagnosed, I saw somebody in a wheelchair and found out he had Friedrich's ataxia.
And from my point of view, I didn't quite understand that that was going to be my future.
[00:09:24] Speaker A: Not to trivialize your experience or his experience, but every time I hear that term, I think of a video game or a computer game.
It's really weird because it could be a medication for all the oni.
The uninitiative.
No, it.
And then you. You go.
You mentioned earlier that it's a disease.
Well, not every disability is a disease, and every disease is a disability, but they often get interchangeably swapped out for one another of the assumption that all diseases, all disabilities, inevitably lead to death.
Which, I mean, if. If you really want to take a broad.
Paint brunch.
Yeah. Everything leads to death. I mean, that really the whole point of life.
We're all terminally human. To borrow a bridge from a broad way musical.
So what.
What is the disorder?
Well, disorder, disease, disability.
What is it specifically?
Terminology wise.
And.
[00:11:58] Speaker B: Yeah.
Well, ataxia is just loss of coordination and balance.
To make that simple, Friedrich was just named after the guy who just discovered it.
[00:12:15] Speaker A: Yeah. Cerebral palsy, which I have, was originally named after the doctor.
Dr. Little, who discovered.
And so that is remarkably common in the medical community. Community.
I don't know how that became the standard.
It seems ridiculous. I mean, why would a doctor much let anyone want a disorder named.
I sure as hell wouldn't, but I did. Yeah.
[00:13:11] Speaker B: Then there's Lou Gehrig's disease. Yeah.
Yeah. But so basically, I'm gonna abbreviate.
[00:13:23] Speaker A: Yeah.
[00:13:25] Speaker B: FA is different in almost everyone who has it.
Some people are diagnosed at 4, 5, some as little as 65.
And some have heart issues, some people don't.
So it's. It's all. It's different than every person who has it, what affects them and how quickly and things like that.
[00:14:05] Speaker A: And so you got the diagnosis.
What would the adaptive process of learning how to integrate the disorder into your life and what would you like getting reused to movement, for example?
[00:14:36] Speaker B: Well, that.
So I was kind of in the dark about the disability culture, the independent living movement.
[00:14:54] Speaker A: Most people are to be absolutely.
[00:15:01] Speaker B: I. I was in the dark until about 10 years after my diagnosis.
I started working.
I lived in Wisconsin at the time.
I live or worked for the Wisconsin Coalition of Independent Living Centers.
And that was really my introduction into the whole world of disability and understanding the social model and realizing that I'm okay the way I am. I'm not supposed or I don't know if supposed to is where it the right word. But I don't need the cure to make myself happy. And it's not necessarily my disease that's disabling me. It's the society around me.
[00:16:17] Speaker A: Yeah.
[00:16:18] Speaker B: That just isn't set up for me.
[00:16:24] Speaker A: And so how has the book been received and how does it feel to be a author of a memoir when people don't really write memoirs?
Too much in the age range that you find yourself in.
[00:16:59] Speaker B: Yeah, I definitely feel like the feedback I've received has been mostly positive.
The best thing I heard was from somebody who said she had multiple invisible disabilities.
And reading my book was the first time she felt heard and seen. And I think that's.
I mean, that's really a huge reason why I wanted to write it too, is to let people know that, hey, you're not alone here.
[00:17:49] Speaker A: Yeah, that's very, very.
That's very, very important and poignant when in.
Undoubtedly the beds are one of the best compliments you can receive when your walk is so accessible but so focused as well, that you can bring others in, in and be a light for someone else going through.
Maybe not in totally the same thing, but they can have the experience that you wish you had before you wrote the book.
Obviously, writing the book and releasing it must have done something to your shame.
Am I right about that assumption?
[00:19:19] Speaker B: And, oh, writing it. Yeah, made me less shame for sure.
[00:19:27] Speaker A: And so talk about that shame, because that's a important topic when you come in to a new way of movement, new way of living.
[00:19:56] Speaker B: I.
So the majority of the shame I felt was because I was incontinent. I peed my pants probably every day. If I'm really honest about it.
So it was just one of those things I didn't want to talk about, didn't want to bring it up.
And I hesitated to bring it up in the book, but then. And I kind of thought about it, like, if my friends from college read this, they may be like, oh, she left out this whole other part of it, and it wouldn't feel authentic to me at least.
And plus, I wrote up a scene where I talk about it and I brought it to my writing group and said, you know, I don't even know if this belongs in the memoir, but let me know what you think. And I kind of thought they'd go, no, no, whatever, don't worry about it. And they were like, yeah, it belongs. Of course it belongs.
So that really helped me do. Because they were people who didn't know much about disability, but they saw the potential impact of me being that vulnerable.
[00:22:05] Speaker A: Yeah, I think it really, really helps, particularly in memoirs or autobiographies where the more unflinchingly authentic you can be and you, meaning anyone can be, the.
The more hopefully the more well received the book will be in the impact.
It shows bravery that you didn't leave anything out that was a critical component or story angle of adapting to the disability or disease. I mean, regardless if it's progressive or not.
Let's talk about the subject title of the book, Finding Balance beyond my Diagnosis.
Could you talk more about what that means in the process of finding balance beyond everything else you're dealing with?
[00:23:53] Speaker B: I. I think it's, again, ataxia is loss of balance and coordination.
So that was where I could find a little bit of space and equilibrium to open myself up to things that were not just about my diagnosis, which I think is how the medical model disability looks at disability. You are your impairment or your disease.
[00:24:41] Speaker A: Yeah, yeah.
[00:24:43] Speaker B: You know, and I wanted to stretch that.
[00:24:49] Speaker A: Yeah. And I mean, the medical model and the rehabilitation model focuses on the person correcting their own impairment or disease or whatever, whereas the social model focuses much more clearly on the overall impact that society has on the person with the disability and add the mode, pervasive, disabling, characteristic of life. And it's not trying to shame the culture in to be more accepting mindset. I mean, when has that ever worked?
It's just like, it's not fun.
And so, yeah. Talk more about progressing through the medical model to finding a more balanced approach beyond the diagnosis.
[00:26:47] Speaker B: Well, I think thinking about this in the past couple of years especially, I don't think this is a linear process by Any means it's not.
And I'm still dealing with a lot of internalized ableism.
[00:27:14] Speaker A: Yeah.
[00:27:15] Speaker B: Which is almost harder to come to terms with.
[00:27:21] Speaker A: Yep. Yeah.
[00:27:22] Speaker B: And recognize in yourself.
So, you know, I think there's so much more to be learned, and I'm trying to be more open about it and also give myself a little grace. That was the other thing I took from writing the book, was giving myself a little grace for, you know, being 25 and the stupid things I would say.
[00:28:05] Speaker A: Yeah, Yeah. I mean, 25 is a remarkably young time frame and age to.
I.
How would you tackling the prospect of writing your life story at that tinder age of.
[00:28:50] Speaker B: Youth?
So a lot of my. My book is also centered around music, so I make a lot of references to different songs and genres and stuff. Stuff in.
In the book.
And really used music to kind of help put me back in that mindset.
Yeah. So again, you know, like, it's a memoir, it's creative nonfiction. It's my story.
What I, you know, the impact things had on me. It may not be 100% accurate.
[00:29:47] Speaker A: Yeah.
[00:29:48] Speaker B: But that's, you know, that that was part of.
[00:30:01] Speaker A: What are the main takeaways that you hope a person will take away from reading the book?
[00:30:17] Speaker B: Well, I think if you.
If you're able bodied, I hope it helps shift your perspective about people with disabilities and the different processes that we all have to go through with Social Security and Medicaid and, you know, all that and finding transportation and driving and things like that. And also employment.
I hope, again, maybe employers would be a little more open to hiring somebody with a disability, but if you're.
Well, I shouldn't say just overall, I want people to understand that no matter who they are, what they are, they are worthy and capable and lovable and. But especially if you have a disability, I think those are important things to remember and to hold on to.
And remember that just because you're disabled doesn't mean your life has no meaning or can't be fulfilling.
[00:32:17] Speaker A: How had your family reacted to the memo war? In general?
[00:32:27] Speaker B: Mostly it's been very positive.
My mom said a couple of things that were wrong, you know, or that sequence of events was a little messed up from her perspective. And that's fine, you know, but my mom in particular was the one person I was really afraid of reading it.
I was afraid she would get hurt.
And she did tell me that she did cry afterward, but it was because she thought she and my dad should have done a better job when I was growing up. And that really Lifted a huge amount of pressure from me, and it made me, again, feel I've seen by my mom for the first time in a long time.
[00:34:05] Speaker A: Let's go back to the age that you were diagnosed.
17.
That's a very particular kind of age, because you're almost at what ladies, America assumes is full adulthood, which is 18. And let's be real, the really only thing more that 21 introduces is your ability to drink legally.
So that's how most people remember 21 anyway.
I mean, you were just smack dab at finaging high school.
And what would you like receiving this massive diagnosis at that age? Because you're not 10, you're not 20, you're 17.
I mean, and you're about to go graduate and go to college.
And then this is a huge plot, 20th side Street.
What words.
The timing of the diagnosis like for you.
[00:36:08] Speaker B: So I. There's two different things. So I was lucky in that I grew up going to school with disabled kids. Our school was fully integrated.
I had a blind teacher in grade school. So disability wasn't as scary to me, but.
Well, it was scary no matter what. But it was also, like, I kind of felt like I understood a little about it.
But the biggest thing was that my neurologist told me that I shouldn't let my diagnosis hold me back from pursuing my plans. Like, I should just keep going no matter what, and then kind of adapt as I went. And so that was.
That was a huge, huge point for me.
[00:37:48] Speaker A: Before I ask the next question, I have to do something.
I'll be right back.
[00:37:58] Speaker B: Okay.
[00:38:00] Speaker A: So the book is a very important part of your advocacy, naturally, because it's. It's your life story.
And you mentioned that you were able to write it when you were taking time off work.
Taking time off work for health reasons.
What.
What else do you do in terms of advocacy and finding balance in your unexpected life?
[00:38:52] Speaker B: Well, I was a mentor for a group for youth with disabilities.
Unfortunately, that group is no longer around.
But now I'm also part of the Friedrichs Ataxia Research alliance, or Farah.
And I've. I'm an ambassador for them, and they're trying to just get more attention brought to the rare disease community in general, not just Friedrich's attacks. Yeah.
And I'm also involved. I've been involved for the last year or so with a group called Diversity.
[00:40:01] Speaker A: Yeah.
[00:40:02] Speaker B: Which is online community run by people with disabilities, there to support other people with disabilities in, you know, a myriad of ways. If they're looking for help with their business, creating a Podcast marketing, a book, whatever, you know, there are lots of different opportunities.
[00:40:40] Speaker A: And so engage there are any inspiring advocates looking to write their own story or to explore mentoring other people with disabilities.
Leg goes on and on.
What would be some advice you would give them going forward?
[00:41:17] Speaker B: Well, first of all, find your local independent living center or center for independent living, which I guess they call them now.
Find out, maybe somehow get involved with them, volunteering, whatever it might be. There might be city advisory groups.
[00:41:52] Speaker A: Yeah.
[00:41:53] Speaker B: For accessibility or things like that that you can also get involved in or if you don't wanna like physically go anywhere, do much. I think really getting to know and understanding the social model of disability, what it is and how it can be used and how, how it can relate to people with disabilities in many, many, many, if not all situations.
I think that's, that's a big, big one as well. And I definitely encourage people to go ahead and write their stories, write it down again. It doesn't have to be a hundred percent accurate.
It's your perception.
[00:43:13] Speaker A: And we've talked about a lot of things in this episode and I hope you'll consider coming back on the show.
[00:43:30] Speaker B: Of course, yes.
[00:43:33] Speaker A: I, I like to think that both advocates with disabilities and those who have yet to discover or embrace their disabilities in groups within those groups listen and watch this show.
I'm not naive enough to, to assume that everyone takes away the same things from each episode.
So as my guests, what do you hope that advocates with disabilities take away from this episode? And what do you hope that those who have yet to, to discover or embrace their own disabilities take away from the zeppelin?
[00:44:38] Speaker B: I really, ultimately, I just really want people with disabilities to under, like I said, understand they are worthy of love, of everything that, you know, supposedly you achieve as a non disabled person and that you're capable and you can live a fulfilling life and you know, just get out there and start doing things and, and trying new things.
I'm, I'm not, you know, oh, everything's great when everyone's gonna be open to giving you accommodations.
Because I know that doesn't happen. I know there are lots of people, but I still think it's worth taking the chance of getting out there and asking for what you need.
Like, I don't. The other thing too is I think it was difficult for me to ask for help.
Specifically. I'm talking about like in school, if I didn't understand something, I felt I couldn't ask for help because that would make me seem weak or like I was unable to do something.
Don't be afraid to ask questions.
Asking doesn't make you weak.
[00:46:45] Speaker A: And what do you hope that those legendaries of yours who haven't discovered or embrace their own disabilities would take away from the job?
[00:47:08] Speaker B: That if you haven't discovered it, it's okay. Like you were saying before, most of us didn't grow up with a handbook on how to be disabled or.
[00:47:28] Speaker A: That would have been helpful. I know you're joking, but would have been helpful in some cases.
[00:47:39] Speaker B: Yeah. So it's, it's okay. Give yourself some grace. If all these terms are really daunting to you, like the social model versus medical model, it's okay. You know, you can be where you are, take baby steps. It's not going to happen overnight.
[00:48:09] Speaker A: Before I let you go, my friend, what getting back to the book.
Third, second, what was the modes rewarding chapter to write and what would the most hardest chapter to write in? Why to each.
[00:48:39] Speaker B: It's, it's interesting because I look at it now and I wish I would have dealt or delved in a little more or a little deeper to the section where I discovered disability culture. For whatever reason, that one was difficult for me to come to grips with, I guess and really go there. So that would be one of them. But I'm really proud of the first chapter just because it's something I wrote.
I've written many drafts in that scene and it's, it always had a big impact when I brought it to my group.
So I really appreciated that.
[00:49:59] Speaker A: You think there will eventually be a audiobook?
[00:50:07] Speaker B: I hope so.
[00:50:10] Speaker A: Yeah.
[00:50:10] Speaker B: I hope so.
[00:50:13] Speaker A: Audiobooks are all the rage nowadays.
I personally get very, very spoiled by audiobooks.
Jennifer Gadz now, thank you so much for coming on and I look forward to talking to you again soon, my friend.
[00:50:44] Speaker B: Thank you. Can I say my.
[00:50:49] Speaker A: Oh yes. Absolute.
[00:50:51] Speaker B: Okay.
You can find me on Instagram at Jenny G. Writer.
And I'm also on Facebook as Jennifer Gassner, author.
My website website is jennifergasner.com and if you go to my website and sign up for my mailing list, you get a link to the playlist for the book.
So that's, that's kind of a fun thing.
And you can buy my book on Amazon, Barnes and Noble.com and basically anywhere you buy books, it's probably not going to be on the shelf but they can order it for you.
[00:51:56] Speaker A: Well, Jennifer, thank you so much for your canda and again, I look forward to talking to you again soon. Soon.
[00:52:08] Speaker B: Thank you so much, Keith.
[00:52:12] Speaker A: Take care. Have a good week.
You have been listening to Disability Empowerment Now. I would like to thank my guests.
You are listener and the Disability Empowerment team that made this episode possible.
More information about the podcast can be
[email protected] or on our social media Disability Empowerment Now.
The podcast is available wherever you listen to. Podcasts are on the official website.
Don't forget to rate, comment and share the podcast.
This episode of disability empowerment knowledge copyrighted 2024 SAM.
