Episode 57: Breaking Through Barriers to Conquer College
She first experienced vision complications at the age of 20, but never let this stop her from pursuing her aspirations...and we're beyond excited to welcome her to this episode of “Demand and Disrupt”!! She is Stephanie Levin of New Jersey, who holds titles ranging from PHD candidate, to student affairs assistant, to even recently published author! Her debut is entitled “Picking Up the Pieces: Finding My Way as a Visually Impaired Woman in Higher Education”. Join Stephanie as she describes the onset of her partial vision loss, the inspiration behind her book, and the content we'll be treated to between its covers. She'll also explain the PHD program in which she's enrolled, detail her Student Affairs position at Rowan University, and explain the means by which we can purchase her book.
To learn even more about Stephanie Levin, feel free to email her at [email protected] or visit her website at stephanieanlevin.com
Visit the article Sam and Kimberly discuss at the beginning of the show at https://www.americanbar.org/groups/diversity/disabilityrights/news/why-disabled-people-self-accommodate/
Thanks to Chris Ankin for use of his song, “Change.”
The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.
Be sure to follow the Advocado Press Facebook page
Visit Appalachian Assistive Technology Loan Fund for assistance.
Visit Moving Forward, the Advocado Press blog.
Send comments and questions to [email protected]
Demand and Disrupt is sponsored by the Advocado Press and the Center For Accessible Living.
You can find the transcript in the show notes below when they become available.
Transcript:
You're listening to Demand and Disrupt, the podcast for information about accessibility, advocacy, and all things disability.
Sam: Welcome one and all to Demand and Disrupt, a disability podcast.
We are so pleased today to be joined by a lovely lady named Stephanie Levin.
She is a newly published author documenting her recent disability and vision loss in a book entitled, Picking Up the Pieces, Finding My Way as a Visually Impaired Woman in Higher Education.
So we will be chatting with Stephanie in mere, mere moments.
But right now I'm pleased to bring in my partner, Ms. Kimberly Parsley.
Kimberly, how are you?
Kimberly: I'm doing very well, Sam.
Thank you.
I listened to your interview with Stephanie and a wonderful job.
Lots, lots of talking points there.
I know we can.
Most of us listening to this podcast know what that's like at the beginning of your disability journey.
Come into terms with that.
It's tough, isn't it?
Sam: Yeah, it is tough.
And, you know, I've been blind.
Well, the first time we discovered my blindness, it was seven months old.
But this lady, Stephanie, she first experienced vision loss at the age of 20, which was not that long ago.
So, you know, it was new terrain for her while she was going to college.
But it didn't didn't stop her from pursuing her goals and and aspirations.
But yes, those in our audience who are in the early stages of their disability, whatever that disability may be, they ought to be able to identify with Stephanie for sure.
Kimberly: Absolutely, absolutely.
It's it's it's tough.
And, you know, sometimes sometimes you go through a thing and you think you're done and, you know, disability creeps up again.
It's it's not always a straight line, is it?
Sam: Yeah.
Even when you think maybe it's over and done.
Sometimes it creeps back or or sometimes other challenges, other disabilities present themselves.
Kimberly: Yeah.
You know, what is it they say about disability?
It's the one minority that we could all join at any time.
Sam: Oh, I've never heard that, but I like it.
Kimberly: Yeah, it's true.
Sam: And if we if we don't have a disability, chances are we know somebody who does.
Kimberly: Or or we could.
I mean, you know,
Sam: Yeah, maybe that's true.
Maybe we have a disability and don't know about it yet.
Kimberly: Yeah.
You know, things can happen.
So, yeah, it's interesting to read people's initial their early stages of that of that journey.
And hers was in higher education and fighting for for what she needed and coming to terms with needing those accommodations.
Sam: She's a she's a Jersey girl.
I guess, as they say at their joys, a girl, they always have their unique ways of saying things.
(Laughter)
Sam: But anyhow, yeah, as we mentioned, I believe, you know, what's history?
My first interview from Jersey and maybe not my last.
But, you know, she spent her life in the in the Philly area.
And, you know, we had a nice conversation off the air about Philly cheesesteak sandwiches because I am a big fan.
Kimberly: Oh, are you?
Wow.
Sam: Philly cheesesteak sandwiches.
(Laghter)
Sam: And I don't know about you, Kimberly, but I definitely love them.
And they say that you haven't had a Philly cheesesteak sandwich done right until you've had one in Philly, which is that right?
Kimberly: Is that right?
Not me, me either.
Sam: So, yeah, well, I had, you know, I had eye treatments and stuff in the Wills Eye Hospital in Philadelphia when I was real little.
But at that point, Kimberly, I was I was too young to partake in a Philly cheesesteak sandwich.
Kimberly: Yeah, I don't think you want a seven month old having a Philly cheesesteak.
(Laughter)
Sam: No, no, absolutely not.
That could be bad.
Kimberly: It could go badly.
Sam: Yes.
Yes.
Kimberly: And, you know, I was looking up an article after listening to after listening to your interview with Stephanie.
I found an article and I shared that with you.
It was by Katherine A. McFarland.
Do you remember the name of the title of that article?
Sam: Oh, yes.
It was obviously when the system fails, when the system fails, how people self accommodate.
Kimberly: Right.
Right.
It was about disabled people self accommodating.
And yes, it was interesting.
So it's talking about kind of just a brief overview.
And I will I will link to this in the show notes for people linked to this article.
And I believe it's from the American Bar.
It's American.
Sam: Yeah, the ABA American Bar Association.
Kimberly: So Sam's laughing now because the Garth Brooks song just came in his head.
Sam: So I did pop in the American Honky Tonk Bar Association.
For those of you that don't know.
Yeah, you definitely ought to go back.
And if you need a good laugh today, listen to that song.
Kimberly: I could tell it was in your head, Sam.
And this article is interesting about how people self accommodate and and sort of why and that doing so you know, this article says like doing so is an example of like a system breakdown.
And I found that interesting.
I don't know about you, Sam, but I definitely have self accommodated.
I have bought things I needed for a job rather than ask for them.
Sam: And let the employer make the purchase.
Yeah, I think I think we all have to to a certain extent, but the tie in here, folks, to the the chat I had with Stephanie is that, you know, she started grad school shortly after her partial vision loss, and she refused any accommodations that she was entitled to because she worried that if she accepted accommodations, it would sort of make her look bad and there'd be a stigma there.
And that was, you know, I never refused any accommodations when I was going to college, Kimberly.
I just looked at it like, you know, that was a way to level the playing field.
And, you know, it did require I did need documentation, which I know this this lady, this professor that's noted in the article, she stated that, you know, the law technically doesn't require a whole bunch of documentation about your your disability.
But so I do remember having to, you know, present that.
But but as far as the accommodations, I, you know, I always took advantage of all that that I was entitled to when I was at the mighty Western Kentucky University.
Did you, Kimberly?
Kimberly: Well, yeah, because I mean, when I was especially in high school and college was in the 90s and it wasn't like there was a a buffet of accommodations being offered at that time.
It was, you know, fighting and struggling for every single thing I got, you know, for the most part.
So, I mean, it was trips to school boards and things demanding access.
And heck, I mean, some people have gone through this.
And just to be able to go to school at a mainstream school.
Sam: Well, this is this is very true.
And it is, you know, I did read in the article that, you know, there is pressure on students to negotiate their own accommodations.
And I can sort of relate to that.
I was taught from a young age the importance of self advocacy, you know, letting people know and helping professors understand what it is you need.
Kimberly: That is true.
That is true.
And especially when you're at the college age, you do have they do like, you know, there's a paper you take to your professor to let them know that, you know, of course, it's not like you and I could hide our needs.
Sam: Right.
Yeah, it's pretty obvious when somebody walks through a room with a white paper.
Yeah, they're going to have a, you know, vision loss to an extent.
Kimberly: Exactly.
So so it's not like we could could hide it.
So, I mean, it was the first day you go to the professor, you show them your, you know, your form and what you need.
You schedule a discussion or or whatever.
Sam: So, yeah, you can sort of talk about it.
Kimberly: Yeah.
Sam: But yeah, basically, the paper just sort of outlines all the accommodations that you might need or, you know, you're entitled to write.
Yeah.
And, you know, it's just a blanket letter.
Kimberly: And I do think it's important.
But I also think we need to teach people how to advocate for themselves rather than just expecting students to do that.
I think teaching them how is very important.
Sam: Yeah, there's a skill there.
And, you know, part of it is, like you said, knowing what to say and when to say it, how to say it.
And that can be easier said.
And some of that you just sort of learn as you go.
You know, it's one of those things you get better at it.
They should, you know, the more you do it.
But there could be a little, you know, a greater degree of education along those lines of of how to take up for yourself when it's needed.
Kimberly: Yeah.
And, you know, I find I didn't I don't think I had a problem advocating for myself in terms of what education, because I knew that the law was on my side.
Sam: Right.
Kimberly: But in where I really was more reticent about doing that was in the field of employment, because no one has to hire you.
And I just kind of wanted to come in, prove I could do the job and wasn't going to be any trouble.
Sam: Right.
And, you know, like you said, you you bought stuff to use on the job at certain times for yourself when technically the, you know, it was the employers.
Sort of obligation to provide that assistive yes, device or technology for you if they write, they wanted to hire you.
Kimberly: And they and they might well have done so, but I probably would have.
But I just didn't I didn't feel brave enough, I guess, to ask for that.
Sam: So you just bought it for yourself.
You know, it's one of those things you like.
My motto has always been you find the way to do what you got to do.
And so that's what you were doing.
Kimberly: Yeah, yeah.
But it's an interesting article.
I encourage people to follow that link in the show notes and read the article and, you know, ask yourself, have you self accommodated?
When maybe there were there was another way.
Sam: So and if you'll send us your thoughts on that article, you just might get a shout out on our next episode.
Kimberly: Like we're going to shout out to Jerry Wheatley, Jerry Wheatley.
Hey, Jerry.
Yes, Jerry sends us such supportive emails about our my interview with Dr. Patrick Kitzman about how he's been in the disability community in Kentucky for a lot of years and doing a lot of really creative, unique work.
So and Jerry was pleased that some attention got put on Patrick's work.
Sam: So Jerry's our number one fan.
Kimberly: He really is.
He is our number one fan.
We not everyone out there is going to be able to beat Jerry.
But hey, send us, you know, he leads by example.
Sam: He leads by example.
And you can you can tie Jerry for our number one fan if you want to.
Kimberly: There you go.
You can't beat it, but you can tie.
There you go.
Exactly.
So send us an email with your thoughts to [email protected].
And we will give you a shout out on the air.
And hey, if you've got a story idea, something like that, we would love to hear it.
Love your questions, comments, suggestions, all that fun stuff.
All that fun stuff.
Kimberly: Bring them on, bring them on.
We want to hear it.
And speaking of things I want to hear, Sam, you want to throw it to your interview?
Sam: Absolutely.
Let's not keep her waiting any longer.
And we will get our side set on Miss Stephanie Levin.
Kimberly: All right.
Can't wait.
Thanks, y'all.
(Music playing)
Sam: We are always pleased to promote authors here on the demand and disrupt.
And we have a brand new one here.
On our hands today, we are thrilled to welcome a brand new author.
Like we said, she is also a fairly recently visually impaired individual.
And we will get that story here momentarily.
But anyhow, her book is entitled Picking Up the Pieces, Finding My Way as a Visually Impaired Woman in Higher Education.
She currently serves as a management assistant in the School of Osteopathic Medicine at Rowan University.
So we're actually making history on two ends here.
Not only is this her very first podcast, but it's my very first, my very first conversation via Zoom with anybody from New Jersey.
So we're sort of killing two birds with one stone.
But I am pleased to welcome to the podcast today from Stratford, New Jersey, direct via Zoom, none other than Miss Stephanie Levin.
(Clapping)
Stephanie: Hi, Sam.
I'm very happy to be here.
Thank you so much for having me today.
This is such a wonderful experience.
Sam: Well, I tell you, we're equally excited to have you here.
So glad that you found us.
Now, Stratford is South Jersey.
And you were telling me that you have basically lived in the greater Philadelphia area your entire life.
Now, I've got a slight history with Philly.
Now, it dates back, you know, before I was able to sort of process.
And I was just a baby, but I'm actually totally blind.
And I actually went to several doctor's appointments at the at the Wills Eye Hospital there, the Wills Eye Hospital in Philadelphia.
Are you familiar with that?
Stephanie: Yes, Wheels Eye was where I had my two surgeries, actually.
And they're really incredible people.
Sam: They are.
Stephanie: It's really, yeah.
And they have done so much for me.
And I'll talk a little bit more about my surgeries and my story.
Sam: Yeah, sure.
Stephanie: But yeah, it's definitely no Will's Eye.
And, you know, so if you want, I can definitely get into my story and how I became visually impaired.
Sam: Yeah, we'll get into that here very, very shortly.
But yes, they attempted to save my vision.
Unfortunately, they were unable to do so, but they were able to prevent the cancer from spreading to other parts of the body.
So they were definitely a godsend to me in that regard.
I was only seven months old when I was diagnosed with retinoblastoma there.
Jerry Shields was my doctor, Stephanie.
And I think he's been retired for quite a while now.
Stephanie: Oh, really?
Sam: OK. You probably don't know Jerry Shields, but anyhow, it was a small world.
You know, we got up there.
I was just a baby, of course.
But he started talking to my parents and he goes, he goes, what part of Henderson are you from?
Because that's where we're from, Henderson, Kentucky.
It turns out he was from Union County, which is right next door to Henderson County.
So here my parents were in Philly, like 12 hours away from my hometown.
And, you know, my doctor was somebody who was actually from this area, which was, you know, quite a small world indeed.
But Jerry Shields has, I think, been retired, like I said, for a number of years.
So you wouldn't have had the pleasure of meeting him.
But anyhow, Stephanie, it's great to have you here.
Like I said, we'll discuss, you know, your vision complications here in a bit.
But I know that you weren't faced with these until the age of 20, Stephanie.
So give me a little bit about your background prior to that.
Like you said, you were born and raised in that area, essentially.
What was your school life like growing up?
What were some of the activities and subjects that interested you and helped you to pass the time as a child?
Stephanie: OK, so yeah, so I was born on June 11, 1992.
I am currently 32 years old.
Sam: See, I love it. You're not ashamed of your age.
Stephanie: No, no, not at all.
No, I think age is just a number.
And honestly, I'm maybe 32, but I feel like I'm 21.
Sam: How about that?
You know, you feel young.
That's the most important thing.
Stephanie: Yeah, exactly.
Age is just a number.
But yeah, I was born in Voorhees, New Jersey, and I lived in Sicklerville, New Jersey, still in South Jersey until I was about 13 years old.
I was a typical child.
I went to Catholic school my whole life from kindergarten to eighth grade.
I had a lot of friends.
I had very loving parents.
I had a grandmother who I was very, very close with.
I did gymnastics when I was a little girl.
I took music lessons.
I actually was a singer.
I still like to sing in my spare time.
I learned to play the piano.
Sam: If you want you to sing a few bars for us before we get off here.
Stephanie: Oh, gosh.
Oh, yeah.
Sam: You may not be warmed up, but that's okay.
Stephanie: Oh, gosh, that's so funny.
But yeah, I did gymnastics and I took music lessons.
I was just a really happy child.
Sam: All right, Stephanie.
Talk, if you would, dear, about the nature of your college experience.
You did do your undergrad at Rowan too, correct?
Stephanie: No.
So I did my undergrad at Stockton University.
I majored.
Yeah, yeah, I loved it there.
So I had visited some colleges and, you know, as you do when you're looking, you know, to take that next step and go to different colleges.
Sam: Sure
Stephanie: So I visited the campus and I remember I stepped on the campus and I'm like, okay, this is where I'm meant to be.
And it was just a no-brainer.
So I decided to pursue business management as my major with a minor in theater studies and a concentration in acting as an undergrad.
And I was just...
Sam: Interesting cobination
Stephanie: Yeah, so I have a musical background and I also always loved theater.
So I really took that opportunity to explore my love of theater.
Sam: Now, was that pretty close to home, Stockton?
Stephanie: Yes, it was 40 minutes away I commuted.
So it was really nice.
I had friends who lived on campus.
So that was a cool experience and I could, you know, when I...
You know, but I'm the type of person who kind of likes her space.
So it was nice to be able to like visit them and then go home.
But it was also just a really cool experience.
I loved learning and I just remember being super excited about it.
And, you know, I really started out very fearless.
I was ready to, you know, learn all I could about business and, you know...
Sam: Stephanie Levin was ready to conquer the world.
Stephanie: Yes, Stephanie Levin was.
Sam: Which will still happen.
Stephanie: Yeah, and I just remember being like, oh, I'm just so excited.
But that sort of all changed when I was 20.
Sam: Right.
Stephanie: And that's where all of this really began, so...
Sam: You were a sophomore at that time, I guess, right?
Stephanie: It was the summer of, you know, going into my third year.
So I had just finished up my second year of college.
Sam: Yes, and that's when you started experiencing vision complications.
Stephanie: Yes, absolutely.
So I have a condition called lattice degeneration.
That is when the perimeter of my eye has little holes in it.
It looks like, I would say, like a lattice fence.
It's not supposed to look like that, but in my case it is. 10% of the population is, in fact, born with this.
So this was a genetic condition.
I am also very, very nearsighted.
And that is something called myopia.
So having those two conditions, really, that's where it all began.
And it was August 2012 when, in my right eye, I started to see like a big black veil or curtain in my vision.
And I was like, I was confused.
I'm like, what is this?
Like, I've never seen this before.
Oh, maybe it's a sunspot.
Maybe it's just like, you know, I look into the sun and it's just a black, you know, dot in my vision or curtain it.
You know, no big deal.
But it wasn't going away.
And I let it go for a couple of days.
And I was like, hmm, this is interesting.
It's getting annoying.
Sam: You're like, I'm not supposed to see a black veil.
That's not right.
Stephanie: No, no.
But at the time, I didn't know it.
I was young.
I didn't know.
I never even heard of Retinal detachment.
So I had told my mom about it.
And I said, I'm seeing this big black veil.
Like, what's going on?
So we made an emergency eye doctor appointment for me.
This was, I want to say, it was a Thursday that this, no, not a Thursday, but it was, I'm forgetting day exactly.
Sam: You've slept a night or two since then haven't you, Steph?
Stephanie: But it's been a while.
But yeah, we had an emergency eye doctor appointment set up.
And I wasn't seeing my original eye position that I normally see as she was out of the office that day.
So I saw someone else.
And I was sitting there.
And I was like, you know, when we're done with this, you'll go home.
You rest your eyes.
It'll be fine.
And we didn't really know what to expect.
So I had the eye examination.
They dilated me.
And the eye doctor said, yeah, she has a slight detached retina.
And we were shocked.
And I remember, my mom was like, well, what's going to happen?
Does she need eye drops?
And they said, no, she needs emergency surgery.
Because if you don't get her emergency surgery, she's going to go blind.
And that's when I started crying.
My mom started crying.
And I had to be rushed to Mid-Atlantic Retina in Cherry Hill.
And I wore glasses at the time.
And I didn't bring my glasses with me.
So I kept my contacts out.
But everything was very blurry.
And I didn't know what was going on.
And I was scared.
I was crying.
I was going to an office in a retina specialist I had never met before in my life.
And I remember going into the room.
And he examined me.
And he said, all right, you have lattice in the left eye and the right.
You have a detached retina.
And what we're going to do is we're going to put a scleral buckle implant in your right eye.
Sclal buckle, OK. Yeah.
It's like a piece of plastic, essentially, that flattens the retina.
And it's often used for retinal detachments.
And they lasered my left eye.
Because had we not, I would have had a detachment in the left eye.
So we went through that.
And first, I was told I was going to have the implant.
And I was going to have something called a vitrectomy, where I have a gas bubble in my eye.
And that also flattens the retina and keeps it in place.
It was August 10th when I had my first surgery, 2012.
I had a scleral buckle.
But I didn't have the vitrectomy.
And I will be honest with you, that pain was the worst pain I have ever experienced at that time.
I was on a lot of eye drops.
I had fluid leaking out of my eye.
I had to wear this plastic covering at night because I couldn't sleep on it.
I couldn't move a certain way.
I had stitches.
It was really, really difficult.
It was a very difficult time in my life.
Sam: Bless your heart.
Stephanie: Yeah, I always say it could always be worse.
But it was rough.
It was rough to be honest.
Sam: And a lot was happening to you in a short amount of time there.
Stephanie: So I had my surgery.
I was cleared to go back to school.
But prior to that, I was really depressed.
I got very depressed and angry about my situation.
Sam: Because here you are 20 years old.
All you'd ever known was full vision.
So this was all new territory for you.
Stephanie: It was.
And I did not have any vision loss this time around, the first time.
But I did the second time.
Now, 2014, I had scar tissue that built up around my implants.
And essentially what happened was the scar tissue kind of pulled on the implant.
And I had a tear.
And this was around Christmas time.
And I remember the night that it sort of happened.
I'm like, something doesn't feel right in my eye.
My eye just felt weird.
And it just didn't look right.
And I'm like, OK. So again, I go back to the eye doctor.
Ironically, I see the same person who caught my previous detachment.
I'm told I have a tear.
And at this point, I'm furious because I'm like, I cannot believe I'm back in this place.
I cannot believe that this happened to me again.
And we went over to Mid-Atlantic Retina this time in May's Landing.
It's a very nice office.
And I had it lasered.
It was uncomfortable.
It felt scratchy.
But the thing of it is that for me, the laser did not hold.
So on Christmas Eve, I want to say, it's detached.
And that was one of the worst Christmases I ever had.
Because if not the worst.
Because at the time, also, my grandmother, her cancer had come back.
And we didn't know how much more time we have with her.
And I had this issue.
And I was just so nervous.
And I thought, OK, it can't be happening again.
It can't be happening.
But it was happening again.
And I finally went to my parents.
And I said, you know what?
There's a problem here.
There's something very wrong here.
So it was December 26, 2014.
We went over to Mid-Atlantic Retina again in the Cherry Hill office.
And I didn't see my original retina specialist.
I had seen somebody else.
And he said, unfortunately, it's detaching.
And she needs surgery.
Sam: So anothe! surgery. Goodness, that's like a reverse Santa Claus, isn't it?
Stephanie: It's like Merry Christmas, you know?
Sam: Total opposite of Merry Christmas.
Stephanie: Yeah, it was a lot.
And my parents had to pay out of pocket.
Sam: For the surgery?
Stephanie: Yeah, for the surgery.
Because no one was really there to authorize it, authorize the insurance.
And so there was that.
And I wound up at Wills Eye in Philly.
I had a vitrectomy this time.
And I had to have a gas bubble put in my eye.
I had to lay on my side for five days to make sure that the bubble was locked in place.
I wanted to go back to school because I knew I'd be graduating that semester.
Sam: Also, your last semester was up ahead.
Stephanie: Yeah, and I was set to graduate.
I was going to, but I couldn't because I had to take a semester off.
And I had this green bracelet.
And a lot of people who had retinal detachments in this community understand the green bracelet, that basically tells you that you can't go on a plane or anything like that.
Because if you go on a plane with this bubble, your eye could explode.
So it's basically you're walking around with this green bracelet.
And it's like, hey, I have a problem.
I have an issue.
And it's hard.
And so I had that.
And like I said, I had to take a semester off from school.
And at the time, my grandmother passed away.
And my grandpa, my dad's father passed away 16 hours prior.
So he had passed away on the 23rd.
And my grandmother passed away on the 24th of February.
Sam: So also just back to back days. That's crazy.
Stephanie: Yeah, that's how it goes sometimes.
You know, it comes in threes and I just was like, well, what's why?
Like it was it was just a lot to handle at the time.
But, you know, I wanted to I had this desire to prove myself that like, you know, I'm still me.
I'm still Stephanie.
Sam: I'm still going to conquer the world.
Stephanie: That's it.
And for me, I was very hard on myself looking back.
But all I ever knew was, you know, you fall down, you keep getting back up.
That's all I knew.
But this time was very, very different because I got up.
I fell down, sure.
But I stumbled and stumbled and stumbled.
Sam: And you'd never fallen quite that hard.
Stephanie: Not to that extent, to be honest.
Sam: Right.
So that was that was really tough.
And so you had to take a semester off.
Were you able to go back that fall and finish?
Stephanie: So I actually ended up finishing in the summer.
Yeah.
And I walked in in the winter.
So in December, it was a lovely ceremony.
Actually, it was nicer because it was smaller.
And, you know, but I still missed my grandma because she wanted so badly to see me graduate.
And she was really unable to do so.
And that was very it was a hard pill to swallow.
But then I went on to get my obtain my MBA, my Master of Business Administration at Stockton.
But this time was very different because so I had a lot of mental health issues surrounding my experiences.
I had experienced anxiety.
Like, I've always been an anxious person, but this was a different level of anxiety.
I had depression.
I also had post-traumatic stress disorder.
And I really struggled with that for a very, very long time.
Sam: Sure.
So your vision loss, before we press on with that, is that so you're blind in one eye?
Or is it just partial vision loss in one eye?
Stephanie: Partial vision loss.
I am visually impaired.
I have so it's hard to explain in the book.
I kind of give you like an illustration as to what it looks like.
But I have a little bit of missing vision in the upper part of my eye.
It flashes at the lower part of my eye, and in the corner, like the left corner of my right eye, I have missing vision.
Sam: So it's just the right eye?
Stephanie: It's just the right eye.
In the left eye, I do have floaters because I'm severely nearsighted.
But I'm also prone to a condition called posterior vitreous detachment, where the vitreous pulls away from the retina.
And there's really nothing you can do about that.
That happens in elderly people.
And that tends to happen as you get older.
And essentially, you just watch for tears and detachments with that because you can still get tears from it.
And that's fine.
Then they laser it.
But I have a small cataract in the left eye.
I have actually had cataract surgery in the right eye.
I also had a membrane, which usually forms after cataract surgery in younger people.
And they had that laser.
So it's been a heck of a journey with my eyes.
But I am grateful for it.
Sam: Yeah, you're stronger because of it.
And like you said, it could have been a lot worse.
And you were able to go on.
You stay at Stockton there.
Get your MBA.
And then I'm guessing that brings us to your current career endeavors at Rowan University, where you are now.
Stephanie: Right.
So I knew that my story, and I often talk about this in my book, I did experience ableism.
I experienced people judging me afterwards and how my competence or my capabilities was challenged at that time.
So it was not an easy road.
I experienced this within higher education.
But I've also experienced this in society.
And I felt that at the time, it was a very male-dominated field.
So I felt like being a business major, I had to overcompensate.
I had to work very hard.
And I constantly felt like I had to prove myself.
Sam: Yeah, there was like a stigma that you had to overcome, wasn't there?
Stephanie: Yeah, there was a stigma.
There was definitely a stigma that had to be overcome.
And it was difficult.
And that took a toll on me because I always worked hard, but I kind of saw it in a different lens in the sense that, all right, well, now I've really got to prove my capabilities.
And the fact that I'm meant to be here.
And I always knew that I wanted to tell my story.
I always wanted to, definitely.
And I found that I didn't know how I was going to do it, but I knew I wanted to.
And I wanted to write a book about it.
So fast forward to 2022.
Sam: That's a few years ago.
Stephanie: Yeah, a couple, three years ago, I was accepted into Rowell University's Doctorate of Educational Leadership program.
And I remember sitting in this orientation.
And I remember my professor who I, you know, he's a wonderful person.
And he had said, you know, so tell me what is a problem of practice within your sphere of influence?
And problems of practice are essentially problems that are happening within your context, your institution.
It's something that you can change.
And I remember thinking, like, what is the problem of practice?
Like, what, you know, what, you know, what can I do?
And it just, it was like a light bulb moment.
I'm like, oh my, oh my gosh, I can talk about my experiences.
This is a problem.
I'm sure if I have experiences, other people have.
Sam: No doubt.
Stephanie: And I found myself looking at different problems of practice.
I looked at mental health and in medical education.
I looked at neurodiversity in medical education.
But I wanted to think bigger, too.
And I kept looking at different components.
As a doctoral candidate, my interests include feminist studies and disability.
And the realm of disability just kept calling my name.
And I really knew that that was the interest I wanted to pursue.
So I began to learn more and more about ableism.
And I began to learn more about microaggressions and how people, you know, and institutions of higher education where perfection is really valued.
And, you know, when we look, think about ableism, we talk about as a valued human state.
And it was interesting to me.
And I had taken a policy inquiry and analysis course.
And I want to say 2000, yes, 2023.
Sam: Policy inquiry and analysis.
That's fascinating.
Stephanie: It's a fascinating class.
Sam: That sounds like it's well above my pay grade.
Oh, goodness.
Stephanie: Oh, no.
So I took this course and I looked at the Americans with Disabilities Act of 1990 and its amendments.
And, you know, how students really have a hard time self-identifying as having a disability.
And that's really within the literature.
Lots of students with disabilities often have a hard time.
Sam: They just try to mask it, more or less.
And they have a hard time admitting it that they have one.
Stephanie: Yes.
Yes, exactly.
Because they're fearful of the stigma.
And there are plenty of other reasons why.
But I really focused on the stigma aspect of it.
So I was like, you know, I wanted to really examine that.
And it resonated with me because I did not want to self-identify.
I could have had, you know, if I had gone back after the second time, you know, they would have provided my, Stockton would have provided me counselor and aid.
I did not want to take that because I didn't want to be viewed as weak.
And honestly, as silly as that sounds, that, you know, I think if you need accommodations, you should take them.
And there's no shame in taking them.
Sam: But you refused them at the time.
Stephanie: I did because I didn't want to be viewed as weak.
And I didn't want to be viewed differently.
And that's where the stigma comes into play.
And landscapes, you know, as far as landscapes of institutions and higher education, it's just, you know, it's a very, very long story.
We could go on and on about it.
But I didn't want to self-identify.
So there was an assignment in my class.
And basically, we could write an opinion piece about our findings and disseminate them through, you know, our opinion piece.
And I went to my professor and I said, I want to do this.
Let's do this.
And she's like, OK, yeah, let's do it.
So we went back and forth and we wrote it and everything.
And she'd make revisions.
And I sent it to a not-for-profit newsroom called EdSurge.
And they took it.
They liked it.
And they accepted it.
I worked with an editor.
And my story went out on March 1st, 2024.
Sam: Oh, so this was like a smaller version of your ultimate book?
Stephanie: Yeah, a little bit.
Yeah, it kind of is like a continuation.
So I talked about my story and my findings.
And to be honest, I didn't realize that this was going to, you know, go as far as it did.
I thought it would have been reposted a couple of times, you know, on LinkedIn.
I had shared it.
Well, I had people reaching out to me about it.
You know, I've had people share it.
I mean, it really went places.
And I was shocked, and I thought, my gosh, people really care about this.
Sam: That's like the ultimate example of viral, isn't it?
Stephanie: It kind of did.
It kind of went viral.
And I was like, I'm like, wow, I was amazed.
And a couple of weeks later, I received this email from David Parker from Lived Places Publishing.
He had read my EdSurge article.
And he said, you know, you really should write a book.
I really think you have a story to tell.
And I was shocked.
At first, I didn't realize it was true.
I'm like, oh, my goodness.
Sam: It's like, am I really reading what I think I'm reading here?
Stephanie: Yeah, yeah, exactly.
And I was like, my gosh, oh, my gosh.
So I met with him, and he was lovely.
And, you know, I filled out a proposal.
It was accepted.
And I went ahead and I wrote it.
And I love how the book turned out because my book is essentially eight chapters.
So I start with the history of disability in higher ed because I don't think people have a very good understanding of it.
You know, disability history is not something that, like, everyone knows.
So I wanted to provide a foundation.
Sam: Yeah, it's not highlighted very often, if ever.
Stephanie: No, no, it's not.
And that's what's surprising to me about this whole thing is the fact that people don't know.
And this is a very rich history.
This is a very important history that everybody should know.
And then, essentially, I went to chapter two.
And chapter two is more like, well, what is disability like in higher ed today?
What's the current landscape?
So then I switched gears in chapter three.
And I talk about, you know, visual impairments.
I give you a basic overview of what a visual impairment is and all of that.
There's other chapters, like, that talk about the medical and the social model of disability.
It talks about barriers for inclusion for visually impaired students.
Yeah, I also talk about mental health.
And that is a very, that's chapter six.
And that's a very, very personal chapter because I really, that chapter kind of is very dark because that is where I really peel back that curtain.
I tell you specifically what I went through mentally.
Sam: The anxiety and depression issues that you were experiencing at the time.
Stephanie: Right.
And I also use literature to highlight statistics and like, what is trauma?
How do college students experience this trauma?
Percentage of college students who experience this trauma.
And I talk about that.
So my book has a lot of literature that I use.
And I researched a lot because it is a concise course book.
But I also talk about it personally.
But I also use a little bit of humor because for me, I often, in hard times, I use humor.
Sam: Oh, humor is the best medicine for what ails us.
So I totally agree with that.
Stephanie: Absolutely.
And I often, so I use a little bit of humor in my wit and sarcasm a little bit because I like to, you know, put in my flair.
Like, I think everybody, as a writer, everybody has this different style.
And essentially I wanted it to be like, well, I'm writing this and I want you to know that I'm writing it.
Like, this is my style.
Sam: Yeah, we want to know it's Stephanie when we read it.
Stephanie: Exactly, exactly.
And that was very, very important to me.
Exactly.
Sam: So here you are, you had this article eventually.
You know, David inspired you to, you know, add on to it and eventually make it a book.
How long did it take you to complete the book, Stephanie?
Stephanie: Oh, gosh.
So I was supposed to complete it in November of 2025.
I actually started last summer, 2023.
And it was, it took a long time because I had, it took me months to write, obviously, because I wanted it to be as accurate as possible.
Sam: And you had to go back and adjust, I'm sure.
Stephanie: Oh, yes, yes, of course.
So we had to, I know I had to go through rounds of edits.
So I had written the whole manuscript.
I had to get copyrights for pictures that I've used and approvals if I named anybody in the book.
You know, I had to make sure that they were, you know, that they approved that their name and their pictures were in the book.
Because I talk a lot about my friends too, who really stood by me.
And I was like, I just need to know if you're okay with this.
So I have it all there.
So it is a long process to write a book because you need to make sure you have all the copyrights.
You need to make sure you have all the permissions.
And even after you've written the manuscript, you will now then go into the editing process.
And it takes a couple of edits sometimes.
And, you know, it took a couple of times to make sure that that's what I wanted to say and convey.
And of course there was also, you know, me making changes.
I would see things and like, I need to change that.
So there was that, it took a while.
And then I finally, it was finally published in April of this year, 2025.
So it was really a journey.
Sam: About a year and a half, I'll tell you.
Stephanie: Yeah, yeah, it did.
And it was really a wonderful experience, you know, seeing it actually up on the Live Places publishing website.
Because I saw that now my story would be told.
Now people will know the truth.
It's hard to explain.
Like when you're an author and you put so much time and effort into it, and you want something to be read by people, it's just such a wonderful experience.
Sam: Yeah, especially after it took, you know, the time it took to write and edit the thing, and then get the manuscript approved and everything.
Stephanie: Oh, it was a heck of an experience.
Sam: It was, no doubt.
And so when you finally saw your, you know, the title of your book there on that site, you were like, yay, I'm a published author at last.
Stephanie: Yeah, that was when it finally felt real.
Like I would say I was an author, but I didn't feel like an author until I was, it was officially out.
Sam: You probably called mom and dad, you're like, hey, you want to throw a party for me?
Stephanie: Oh, well, no, they were very, they were so, so proud.
Oh, no doubt, no doubt.
They really were.
And that it just, you know, because I talk about them a lot in the book, because they were really supportive of me.
And they really, I don't know what I would have done, honestly, had I not had them there.
Sam: They were your rocks.
They were crying along with you at some of those times.
But they were right there and they were strong, just like you are.
You came by it honest there, didn't you?
Stephanie: Yeah, I did.
And it was, it was just, you know, and I also want to say about my book, it's not, you know, I talk about how hard my experience was, but I also kind of tell you how I reconstructed my identity and how I moved forward and like what we can do better.
I want this book to be like a symbol of hope for people, that no matter how bad it gets, you can always move forward and it can be better.
Sam: Yeah, you can always make the best of the situation.
Stephanie: That's right.
And it's just a story of resilience.
And someone said to me once, Gretz, and, you know, but I don't, I want it to be just a sim, just I want it to be a story of hope.
You know, it's, it was, it was painful.
It was hard, but I didn't want it to be like, it's a depressing book, but I wanted it, I wanted it to be real, but I wanted to also show people, yes, you can do this.
Yes, it can get better.
Sam: It, you know, it's educational.
People can learn a lot from, from the struggles that, that you faced and the means by which you were able to overcome them.
And it's a great read for, you know, not only people of higher education, like, you know, professors and other, I guess, administrators, if you will.
It's also a great read for, for students who are, you know, in pursuit of degrees that are seeking to overcome disabilities as well, correct?
Stephanie: That's correct.
It's definitely for, you know, that those realms and, you know, people who just really want to learn about disability, because I don't think that it's discussed enough, to be honest.
I think that there's so much that we as a society and in higher education need to learn about it.
And, you know, people with disabilities should never be limited, you know. Sam: They should never be ashamed of them either, shouldn't they?
Stephanie: No, they shouldn't.
They should not be ashamed of it.
And unfortunately, they, you know, oftentimes they're made to feel that way.
And honestly, like, we're made to feel that way.
And we should not be made to feel that way.
Sam: No, that's not the purpose of this book, to help us to sort of, you know, embrace our respect.
Stephanie: Oh, yeah.
And my journey to acceptance was not easy.
And for the longest time, I was ashamed of it.
And I'll be completely honest with you.
I was ashamed of it.
I didn't like it.
I thought it just made me, you know, gross and ill.
Like, why wouldn't anybody want to be with me or talk to me?
And but now I love it because, you know, I can help people.
Sam: Yeah, I can see that.
Stephanie: My biggest thing is helping people.
Sam: And I feel like it's harder to accept later in life sometimes.
Like, you were 20.
So, you know, all you'd ever known was, you know, complete total vision.
And so, you know, it's one thing if you experience it early in life or as a baby like I did.
But, you know, if you don't experience it until you're a young adult, that presents a whole other challenge.
Stephanie: That's exactly it.
And I actually read about that in my studies.
And it is hard when you have the age of onset of disability.
It is harder.
I remember reading an article.
And actually, people who had acquired a disability, it was a lot more challenging for them to come to terms with it.
And that's essentially like what I experienced.
I had a really, really, really hard time, you know, coming to terms with it.
But over time, I took the steps necessary to really accept who I was, this new person, and kind of saying goodbye to the old person, but accepting this new identity and who I am now.
And I can say that I'm proud of who I am.
I love who I am today, you know?
Sam: Exactly, as you should.
And, you know, that's definitely a tremendous feat, getting the book written and published.
We'll get back to a little more about that here in a second.
But let's talk about your role in the School of Osteopathic Medicine there at Rowan as a management assistant.
Talk a little bit about that, if you would, and the work that entails.
Stephanie: Sure.
So my position is a management assistant for student affairs and alumni engagement.
And I essentially handle anything financial.
So I'm talking, when I talk about finances, I'm talking about class and club budgets, student organization, you know, different things like that.
I'm also handling reimbursements, purchase orders, contracts, any vendor setup, anything financial I handle.
So, and that kind of comes from my business background.
And I get to interact with the students, and I really love interacting with the students.
Sam: And it makes you feel like you're still in college, which in a sense you are because you're a doctoral student.
Stephanie: Yeah, actually, yeah.
And sometimes I'll talk to the students about my research and then they get all excited because, you know, they're doing research and it's just a great time.
We have a good time.
Sam: Yeah, so you can sort of, you know, bond that away with your commonalities and interests and things like that.
Stephanie: That's true, we can.
It's a good time, you know, and yeah.
Absolutely.
Sam: So you're doing this, basically five days a week, and your schooling, I guess, is at night for the most part?
Stephanie: Yeah, so I'm currently in my dissertation now.
Sam: Okay, so you're in the home stretch.
Stephanie: Yeah, so I've been doing this.
I'm in, I would say, year three.
And I basically do my, you know, my study, like I conduct interviews and everything at night or, you know, when I have time off or something like that, and or free time.
And I've learned to juggle it.
At first, it was a bit of an adjustment because I had been out of school for a couple of years.
So when I went back into school, and it was a bit of an adjustment, but I've learned how to manage it.
Sam: As I say, you could teach a class in time management now, I'm sure.
Stephanie: Yeah, I've been always been good with time management, but this is a different time management because doctoral work is so different from undergrad and grad work.
I mean, doctoral is still graduate, but this is a different level because...
Sam: Yeah, it's upper level graduate.
Stephanie: Exactly.
It's very different.
You're taught to think and look at research in a different way.
You're taught to analyze and to write differently.
And dissertation writing, no one can really prepare you for that because that is like a whole different animal.
And that's where I'm at.
I recently wrote chapters one and two.
I passed my proposal.
So I am now in the process of collecting data and it's a wonderful experience.
I'm truly enjoying that.
Sam: You're learning a lot, I'm sure.
And that's a good thing.
Were there the doctoral classes at night, back when you were still taking classes?
Stephanie: So my program was completely online, but we'd have office hours and they were at night, some majority of the time.
And so I'd be at work full-time and then I would come home and do office hours at six or five.
It was definitely challenging.
It's hard, especially when you're...
So you're trying to work full-time, but you're going to school part-time and you kind of have to...
You have to learn how to compartmentalize that.
Sam: Totally online, it has its pros and cons you have to work through.
Stephanie: And you have to be motivated because when you're working online, you're very independent.
So you really have to know how to manage that.
For me, I work very well online.
I actually like it a lot because I can go at my pace.
Sam: And yeah.
On your schedule too, which is a definite plus indeed.
Stephanie: Absolutely.
Sam: How many chapters is this dissertation going to be when it's all said and done?
Stephanie: It is going to be six chapters.
Sam: Six chapters.
Stephanie: It's going to be six chapters, yeah.
I am doing something called the public scholarship model and essentially chapters four, five, and six will be...
One will be an empirical article.
The other one will be a practitioner article.
And the other one, the final chapter will be like an item of my choice.
And essentially, I'm disseminating my findings to these outlets.
That's what the public scholarship is because I would love to teach in higher education.
So I would like to have more publications.
Not that I don't already have...
I mean, I have publications in the sense that I have my book, I have my opinion piece, but that way I'll have a peer-reviewed article.
And that's very important, especially in the realm of higher education and a practitioner article and an item of my choice, which I would love to do.
Sam: Yeah, it'd be great to have other future grad students citing your work with this at like Levin, 2025.
Stephanie: Oh, yeah.
So it's funny because somebody actually cited my Ed Surge article and she reached out to me on LinkedIn and I was like, this is the coolest thing.
I know, I was like, the fact that I'm getting cited.
Absolutely.
Sam: Yeah, I guess the fact that somebody else is using your work in their papers, it is an honor for sure.
So when do you anticipate completing this dissertation, Stephanie?
Stephanie: Ideally, I'd like to defend it in December of 2025 and then I would graduate in January and walk in May.
That's where I'm at.
I mean, I'm going at a good pace because like I said, I'm in data collection now.
So I'm going, everything's going according to plan.
Things can change, but right now, December is my goal.
Sam: Yeah, even though you wouldn't be walking until May, but being able to defend it before Christmas, that would be like an early present, wouldn't it?
Stephanie: Oh, you're not kidding, you would be.
It would be such a wonderful present, like happy holidays to me.
It would be great.
Sam: Happy holidays to Stephanie indeed.
So we actually wish you the best of luck with that, as well as your continued work endeavors.
And tell us, Stephanie, how we can get our hands on this book.
It's called Picking Up the Pieces, Finding My Way as a Visually Impaired Woman in Higher Education.
Tell us how we can get our hands on that book, Stephanie.
Stephanie: Sure, so you can go to the Live Places Publishing website and you can actually, you go under the Disability Studies Collection, you'll see my book.
I also have a personal website too, an author website that people can visit.
It's www.stephanianlevin.com.
And there is a link to where you can purchase my book.
And I would love it if you purchased it.
It comes in e-book form or if you're old fashioned or old school and you like a paperback, you can order a paperback.
I actually received my copies a couple of weeks ago and it's just crazy to see it in paperback form.
Sam: Another source of pride, indeed.
Stephanie: Oh, it was, it was.
And it was just the coolest thing.
But those are the ways you could definitely order my book.
And I really appreciate it if people would do that.
That would mean the world to me.
And I would love it if you'd read my story.
It would be great.
Sam: For sure.
And we will link them to your website, Stephanie, in the show notes as well.
So you're a Levin, not Lerin.
Sorry, I've been mispronouncing your name.
Stephanie: Oh, no, no, no.
You're fine.
You know what?
It's all, it's fine.
That it's okay.
Sam: Yeah, you know, hopefully it's not the worst you've ever been called.
Although if anybody called you, put down shame on them.
But anyhow, yes, indeed, Stephanie, we are sure proud of you.
Like you said, we will link you folks to her website.
And if you would like to reach out to her, in fact, we would love for you to and tell her that you heard her On the Demand and Disrupt podcast.
It is [email protected], correct?
Stephanie: That's correct.
And I would love to hear from you.
Yeah, absolutely.
Any questions?
Please reach out anytime.
Sam: Yeah, questions, comments about the show, about her book.
Stephanie would love to hear from you with any such inquiries or tidbits of that nature, for sure.
Well, Stephanie, thanks so much for coming on and joining us from South Jersey.
We sure hope that you've enjoyed your first podcast here.
Stephanie: I really did, Sam.
It's really been a pleasure being here today and speaking with you and everybody.
Sam: You want to sing?
I know I promised you the opportunity if you wanted to sing a few bars.
Stephanie: Oh, I'm good.
Good?
Okay, all right.
Sam: Well, I'll tell you what, this very well may not be your first time here on Demand and Disrupt.
So, in fact, we'll say when.
When we have you back, you can sing for us then, okay?
Stephanie: I most definitely will.
That'll give you a chance to warm up, get the vocal cords ready, you know?
Get your coffee.
Are you a coffee drinker?
Stephanie: I am.
Sam: Okay, so will that give you time to get the coffee in your system, too?
That always helps me sing based on my singing experience as well, which is somewhat, you know, I'm not a, you know, not a Taylor Swift or anything like that, but not too many of us are, for sure.
But anyway, Stephanie, thanks so much.
We'll do it again.
Stephanie: Thank you so much, Sam.
(Music playing)
Demand and Disrupt is a production of the Advocato Press with generous support from the Center for Accessible Living based in Louisville, Kentucky.
Our executive producers are me, Kimberly Parsley, and Dave Mathis.
Our sound engineer is Michael Parsley.
Thanks to Chris Anken for the use of his song Change.
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Thanks, everyone.