Ep2_Voices of Academia_Navigating Invisible Disability_Syreeta Nolan
Ep2_Voices of Academia_Navigating Invisible Disability_Syreeta Nolan: Audio automatically transcribed by Sonix
Ep2_Voices of Academia_Navigating Invisible Disability_Syreeta Nolan: this mp3 audio file was automatically transcribed by Sonix with the best speech-to-text algorithms. This transcript may contain errors.
Emily (host):
Academia is rewarding, but it's also a huge challenge. It's too easy to feel invisible. Please, let's just talk about it. All the difficult things you think you have to hide. I'm Emily and this is the Voices of Academia podcast. Each month you'll hear a conversation with a different researcher released in fortnightly episodes.
Emily (host):
First, you'll hear their story of mental health in academia. Then you'll learn how the experience was managed. You'll realize that actually you're not alone. There's a global community of researchers that want to talk about how hard this is and how it could be better.
Emily (host):
Welcome back to Voices of Academia. I'm your host, Emily. A 3rd year Ph.D. student in Melbourne, Australia. Today, we'll hear how academia has impacted the mental health of Syreeta Nolan. Then next episode, we'll hear how she's learned to manage. Syreeta is a senior at the University of California, San Diego, in the US. She's majoring in psychology with a specialization in human health.
Emily (host):
Very impressively for her career stage, Syreeta leads 3 research teams exploring systemic factors between methamphetamine use disorder and HIV, as well as universal preventive interventions in children under 13. Welcome, Syreeta. Thank you so much for joining me.
Syreeta:
Thank you. It's my honor to be here.
Emily (host):
So I wanted to start with a couple of questions to sort of get to know you a little bit before we shift gears.
Emily (host):
So, I mean, the first one given we're recording this in the middle of a global pandemic. How are you?
Syreeta:
You know, that may be the new loaded question. I'm ok. I'm taking twenty units. I've got my 8 undergrad that I'm taking for my research and making sure everything stays on timeline, which is kind of crazy. I'm applying to grad school. You know, it's a lot, but, you know, it's a lot of hope too. So I'm good. I'm good.
Emily (host):
Very busy. Very busy. Yeah.
Emily (host):
But in your downtime, is there anything in particular that you're sort of reading or watching or listening to at the moment that you're really enjoying?
Syreeta:
Let's see - I like watching the bachelorette. Like sometimes my brain just needs a vacation, so I'll watch the bachelorette. But also, like in a prior life before disability, I was really interested in becoming a medical doctor one day. So I still loveve medical shows like Grey's Anatomy. Omg The McDreamy surprise ending.
Syreeta:
And it was phenomenal.
Syreeta:
If you guys have not seen the second episode of Grey's Anatomy, you should watch it. It's amazing. So, yeah.
Syreeta:
So yeah, I like my dramas, and my reality TV.
Emily (host):
Me too. It's a good way to switch off from everything that's going on.
Syreeta:
Yeah, exactly.
Emily (host):
And this one might be a little bit of a curveball for you, but what were you like as a child?
Syreeta:
As a child - inquisitive. Like I had a 9:00 p.m. curfew to stop asking questions. I'm like, Mom, what does..? She's like "No, it's after 9. I'm not answering."
Syreeta:
So I held a long list of questions and I would ask her every question in the book all day. And I loved stories.
Syreeta:
I'd always like, "tell me a story, tell me a story." She's like "you've heard all my stories." So yeh - inquisitive and intelligent too. In middle school I said I wanted to be a pediatric neurosurgeon. I realize that dealing with kids when they're sick is not the biggest problem. It's kids' parents when their children are sick. I'm like, no, no, not that section. That's not a great scenario. So when I realized I could be a doctor without being a doctor in a clinic, that's when I really realized that research was a real job that I could go on to explore these unanswered questions about why we're so reactive about mental health and why can't we be proactive?
Syreeta:
Why can't prevention power really be harnessed?
Syreeta:
Yeah, I just get to ask why and a hundred million questions as an adult.
Emily (host):
So, yeah, no more curfews on question time.
Syreeta:
No more curfews.
Emily (host):
And so that is a super unexpected but easy segway into kind of what drew you into academia. But I do before we sort of shift gears into your, you know, mental health experience within academia, I did want to say to our listeners - so we at voices of academia, we really do want to display a commitment to diversity.
Emily (host):
And we are fully aware that we're all female and we all have had sort of quite similar experiences. So if you do listen to this and you feel like your experience isn't being voiced, please, do get in contact with us because we are really, really interested in hearing a whole variety of experiences that people have. So I will say that means that I, as a host, have a lot to learn. There are so many experiences that I don't know about. And so today I've given Syreeta complete permission that if I accidentally say anything inappropriate, she has full permission to call me out. So my ego's on a shelf. I really just want to learn.
Syreeta:
Thank you so much. I really appreciate that spirit of just wanting to learn. I think that's the greatest thing that we could ask for from our allies. For them to listen to us about the challenges and the struggles that we have rather than speaking of what they've heard, but what we live.
Emily (host):
Exactly. So hopefully I can give you a platform to sort of explain some of that today. In your information that you sort of provided to me before today, you indicated that there was a point when you dealt with quite severe mental health conditions and you took a 10 year break from your education to recover.
Emily (host):
So can I ask, what were you doing at the point when you experienced that initially? Were you sort of in a role that was associated with academia or were you in another field?
Syreeta:
So I'll flag the trigger warning for your audience as well of talks of suicide and abuse as well.
Syreeta:
So what happened was, I was in community college. I was enrolled during high school. I was in college in my classes, and I was going for nursing at that point. So it was kind of like not really in academia as like the field, but it was in higher education learning. And what really happened was I was raped when I was 17 at my first job, and it took everything down this really unexpected path. And I feel like my path through academia, through disability advocacy is marked by these really horrible points. Like I actually attempted suicide so many times over those 10 years, I saw some of the worst of our health care system. I really couldn't even deal with school because I was just dealing with trying to find a little more than a couple of days. Being able to train now for decades and for a career is just a blessing. And I found that the greatest gift of those 10 years was finding my passion, because once I learned of the genetic basis of the disorder that I had, I'm like, wait a minute, this could have been prevented? I've had these genes with me since I was born and no one did anything until like I was there attempting suicide and after a rape? And that's when you're going to start? It's like, when a counselor says, I'm going to be there for you.
Syreeta:
It's like they're already lying because they have not been there for you when you really needed them beforehand. So I found that to be the most infuriating thing that was hardest to deal with. And all I got was support from leaving school. I never really considered myself disabled at that point. It wasn't until I became physically disabled and then I learned more about the disability community, to really realize that disability isn't just the disability that as a kid, you're told not to look or stare at, or not to go up and talk to the person and ask questions. It's the person that looks fine too. I feel like there's just so much education left to be shared about "What is disability?" It's not just this medical model of if you have disability.. Money because you're disabled from your government, whatever it may be called in your country. It's all about how does your condition affect your life? If your life is affected by a health condition, whether it's emotional or physical, it's a disability. It may not be like SSI level, but I proudly am capital 'D' disabled. I am proud to be a person with disabilities. To be able to be an advocate in this space. And yeah, it was the hardest thing, but it really helped me find a pathway into where I found my fit in academia. Where I feel health policy is really the key to transforming how we consider mental health, both academically and outside, over the course of our lifespan. In the beginning of disability, to really cope with the loss of who we saw ourselves as. Because I saw myself as an able person who could jump out of bed.
Go for hikes. You know, do all the stuff I want to do. Then my body is like, are you sure we're getting up right now?
Syreeta:
I don't want to get up right now. It's like having a petulant 5-year-old all day long. It's like I don't want to study anymore. I don't want to be in this chair anymore. Mommy. No. Yeah, yeah.
Syreeta:
It's like your body whispers things to you when you're able. Things like I'm hungry. I'm thirsty. But when you're disabled, it's like, yo, I'm in pain! Help! Help!
Syreeta:
It's like Ok, I got it, I got it. You have to learn how to live with those signals, with your body yelling at you for what it needs.
Syreeta:
Maybe I don't have control over meeting those needs sometimes. And that hurts. So, yeah.
Emily (host):
Thank you for sharing, and yeah, this actually brings me to a point that I wanted to bring up. You asked me when we were sort of messaging on Twitter if I considered myself to be disabled. And I thought it was a really interesting question because I never have. And so I think there could be a lot of people in the audience that feel that way, too. They do have an invisible condition that impacts their life in some way, but they don't necessarily view it as a disability and are still kind of trying to act in a way that they feel they should be capable of. Could you maybe touch on a little bit about invisible disability and how you feel like that is linked to mental health?
Syreeta:
I think invisible disability is much more difficult because it's like living with imposter syndrome. Every day I walk outside. You don't see a person with disabilities. You see an able black woman. That's what you think you see. And I can't do anything to change how I'm perceived. So it's almost harder on your mental health, because when I park in a disabled space, I don't know what's going to happen when I get out of that space. Because really there was a time at UCSC.. I parked near my lab in my handicapped space. And this older white guy says you should leave that space for someone who needs it. You must have stolen that handicapped letter from your mom.
Syreeta:
I'll have you know, my mom's healthier than I am. And I told him way too much about my health condition.
Syreeta:
And he was still there berating me about not needing that space because I didn't seem like I needed that space. I'm like, you know what sir? I am someone who needs this space. I walked to the car; walked away. And being invisibly disabled.. It's almost like you have to overcome your own ableism - of being seen as that person who looks able, but accepting what reality truly is for you. How your body needs you to take care of it more, how you need a little bit more support. And we're taught to be so independent in our academic lives. To do this, to just get on with it. Working the hours to forsake everything.
Syreeta:
Who cares about your body? Let's just go.
Syreeta:
It's like,"no. We don't just go." We need to stop and restore and to defend ourselves. And sometimes it's hard in academia to really be disabled because it's not the norm. To really show respect to your body. To show respect for the times when you sleep, times when you eat. I feel like it's like grieving consistently over that able body you wish you had again, but that it looks like you have every time you look in the mirror at yourself. It's almost like that cognitive dissonance of, "I know I'm disabled, but I don't look disabled." So I almost feel like it's easier to cope with disability when those two align.
Syreeta:
I, I don't know what being visibly disabled is like. I will completely say that. I don't know what it's like to go around broadcasting that you're disabled, which is the difficulty of using
Syreeta:
like a wheelchair or a cane. But I know that there is that burden of always knowing that you aren't portraying who you are, wherever you are with invisible disability.
Syreeta:
And that's the way that I feel. It almost feels like imposter system as a person with disabilities and I just have to accept that it is my reality, no matter what anyone sees or does not see,. It's my truth. And I speak it.
Emily (host):
And I imagine that's really hard, you know, to have people questioning you constantly and to have to keep pushing back against that even if you are, you know.. It can make you doubt yourself, I imagine. And we might touch a little bit on, you know, how to start accepting your whole self and everything that comes with that in in the second episode. But I imagine that is probably a continuous struggle and has perhaps been quite a long journey. So I'd be really interested in the next episode to talk a bit more about how, you know, how you approached that. I mean, for our audience, wwould you be willing to open up about what some of those disabilities are for you, if there's anyone in the audience that's maybe struggling with a similar thing?
Syreeta:
Yeah, I currently have fibromyalgia. I have sciatica.
Syreeta:
I have PTSD from my abuse life. And yeah I think those are my main ones. The gastroparesis scares me a little bit because it's my newest disability that I was diagnosed with in February. Sometimes I've seen people talk about the feeding tubes and stuff like that and I pray it doesn't get to that point. But I try my best to manage my disabilities, and that's all I can do. So, yeah.
Emily (host):
And I mean, how do you.. You know, I don't really know a lot about gastroparesis and it's probably outside the scope of today, but just, you know, learning a new diagnosis in the middle of trying to cope with life and also with the academic environment. What is that like? You know, how do you feel your mental health is impacted when you're trying to sort of juggle that?
Syreeta:
Yeah, it's definitely special because gastroparesis basically means my stomach does not process food as fast as it should. So food sits longer. And I should be eating multiple times a day, multiple meals and.. Stopping and leaving the computer is one of the hardest things for me to do.
Syreeta:
But it's about making intentional choices. And I think the hardest thing for me is dealing with undiagnosed conditions that I have with my muscles.
Syreeta:
Like it's not the fibromyalgia. I was diagnosed with myasthenia gravis when I was 18. And UC neurology did not believe the diagnosis, so they took away the medication that managed the condition.
Syreeta:
Like one of the doctors said, "I don't believe you have this, but if you want you can continue taking the medication." But the way he said it made me scared to have him managing my medications. I'm like "maybe it's not that bad anymore."
Syreeta:
"Maybe I don't need the medication." But two years later, I found out that I really did need the medication and it really felt like I had a myasthenic crisis where it just was really hard to breathe and make those muscles actually function. And since I didn't have the diagnosis, I couldn't see the neurologist in the hospital. Then I go deal with medical trauma in the office. And I still struggle to get the support I need. And I think in a way, it's harder to be undiagnosed because you have symptoms before you're diagnosed with any type of disability. And I feel like that undiagnosed like.. there's a hashtag called #NEISvoid that I just learned about. It's "no end in sight," which is like this place where you kind of live in this void, this limbo. And, yeah, it's really interesting thinking about the impact of this and not being able to do anything to treat it, because I have no support on it. And the office that I need to call to get support freaks me out. I'd need to go to my primary to get another referral to go somewhere else. And I don't have that kind of time.
Syreeta:
I'm trying to apply for grad school.
Syreeta:
And the applications are due in just under 2 weeks.
Emily (host):
Oh, good luck.
Emily (host):
So yeah, I mean, that's such an important point as well. It's not just in society where you can face challenges, you know, when trying to learn to manage a disability, I imagine. Even from the doctors themselves, you try to get support and you can face barriers in that respect as well. Do you have any particular examples of sort of that.. Strong memories of that experience since you've been an undergrad?
Syreeta:
Yeh like, I think the.. having the support like, the medical trauma was very hard. It was like a two-hour appointment for an EMG and it was just a nightmare. I was abandoned in the office and, at universities they will give so much support talking about sexual trauma. Like if you're in a sexual situation and you feel uncomfortable, just say no.
Syreeta:
It's that simple. But it's also that simple in medical as well.
Syreeta:
Like I mean, I was awake for the procedure. I could have said no so many times.
And I did not realize I could just say no. I didn't think about that. Like I gave them this benefit of the doubt on Hippocratic Oath. First, do no harm. Maybe they feel this is necessary. I'll get through this. And it's just been this traumatic weight. Like it happened October 5th. And I had so many plans to do my personal statement in a well-staged, slow manner and get like lots of feedback and stuff on it and this threw all the wrenches in so much that I don't even know how I'll be able to finish my graduate application after this thing happened. And there's no support or advocates for victims of medical trauma. There's nothing here. I actually had to have a meeting with my Office at Services Students with Disabilities CARE at SARC, which is this resource center for sexual abuse victims, and CAPs, which is basically counseling and psychological services to tell them
Syreeta:
How much I feel abandoned on this. It's overwhelming and sad and so I'm in the throes of feeling unsupported. And, you know, I really appreciate campus leadership and their support and wanting to change the environment for students with disabilities and provide more support outside the classroom because all accommodations and accessibility are is support outside the classroom and to get into buildings. Disability is more than that to me. I'm not a visibly disabled student where handicap entrances are the end all be all to me. But it's about so much more than being disabled. It's about being an underrepresented minority group. And I think disability is not normally seen as an underrepresented minority group. Numbers are missing on statistics for disabled students, and that's what's missing because if you never see us in your statistics and how our population grows, you never know the group you're failing. It's like if I don't see it, maybe it's not happening.
Emily (host):
Yeah. And actually that is a point that you brought up on the panel that I just watched. So and I can relate to this from a different perspective. But just you mentioned that it's really difficult when you sort of look up the academic ladder and you don't see people speaking about how disability impacts them at work. And you don't actually even know who's affected because there's this culture of sort of not speaking about it. And that means that you don't really have that many role models. And it's really hard for you to know what is it going to be like for me if I would like to progress to that level in my career?
Syreeta:
There's some really sad statistics around it, too, that I wish I'd mentioned while I was on that meeting. That 46% of undergrads are disabled and well, 26% of our population is disabled, at least in the U.S., and 20% of undergrads are disabled. But 11% of us are getting services.
Syreeta:
Maybe, but 3.6% of tenured faculty are disabled. Like all these barriers. Here's an example of that post and then by the end, you barely have any representation of disabled people in tenured faculty and leadership. And it's like that. They don't talk about that.
Syreeta:
You know how bad mental health is for your career if you mention it, or if you mention physical disabilities, like maybe they might see you a different way.
Syreeta:
And it's actually kind of scary to think of talking about disability because I really don't have that many people to say, yeah, it's OK if you talk about this or if you approach it like this way. #DisabledInHigherEd is actually trying to put together a program to help undergrads and stuff with their applications, and applications to undergrad as well.
Syreeta:
It's just hard, really, just trying to navigate without seeing anyone. At least most students, you can look up to someone. You can easily find a mentor.
Syreeta:
But being disabled, there's no ease in that. You only have barrier after barrier after barrier that you hit that says you're not disabled outside the classroom. And that only feels like, that's what impacts faculty because outside the classroom lies your career. So if there's no career support, which there's not - if there's no disabled undergraduate research program, which there's not - if there is nothing to really break down these barriers, these barriers will continue to decay our actual representation as people with disabilities. And we can't help each other because we've been given no platform to really elevate our issues. No platform to really mentor students without fear of losing your job or being seen differently.
Syreeta:
We shouldn't be disabled AND live in fear AND live in fear of facing racism AND live in fear of being labeled a victim of feminism and, like, having male faculty members not see you the same. It's just the burdens compound on each other so we've got a brick wall staring us in the face.
Syreeta:
There is no way that will work.
Emily (host):
That's a lot to deal with. And when one of the other panel members.. so for anyone that's listening, there was a panel at University of California today so our recording session got delayed a little bit, but it was great for me to see some of the students from the disability community and also the disability support program that's run to address a board meeting about some of the personal issues that they face and perhaps some of the adjustments that could be made to try to support them. And one of the students, yeah, he made a really great point. And he was just like, what if the cure for cancer is locked in the mind of someone that has a disability and has been forced to drop out because there's not enough support for them? We're missing so much perspective within academic research, because these different voices are sort of pushed out. And that one really, really got to me because, you know, I think it's similar for people with, you know, any sort of difference that you have. It's an attribute. It's a different perspective. You have, you know, things that are unique to your experience that you can contribute to research in the way that you think.
Emily (host):
And it makes me really sad that this is still an issue.
Syreeta:
It's been 30 years here in the U.S. and the passage of the ADA and this is the first time we've even been able to talk to the University of California Board of Regents and, for our listeners as well, like the meeting is actually available to watch in the history.
Syreeta:
It live-streamed to YouTube. So it will be there. And I do not want to wait another 30 years for some of the regents or even wait another 30 years to make it accessible and more than that, to make us seen, because without disability justice being seen as racial justice, there's no justice, really. So, you know.
Emily (host):
And we will put that link in the show notes as well, so that if you'd like to have a look at it.. I found it really, really useful, personally, just to hear some of the personal stories of, you know, what different people go through because disability.. And this was addressed as well - it's not one thing. You know, everyone has a different background, a different perspective. And so different adjustments need to be made. And it should sort of really be an individualized support process.
Emily (host):
But in terms of, I guess, your experience in terms of combining disability and mental health, is there anything for someone like you, or maybe for yourself a few years ago? Is there anything that you would say to that person?
Syreeta:
Be your own best advocate.
Syreeta:
Like going through that process of self-acceptance and realizing that this is your reality and even if you wish you weren't disabled at the moment, it doesn't change where you are in this moment. And being loving, being kind and really finding a way to get the support you need to succeed and to thrive in your goals and to not let a disability you don't accept stand in your way. With my disability, I don't let it be the liability that everyone sees it as. So that's changed the disability into a capability. Even good comes from it, because there's even this tag going around on Twitter called #MyDisabilityMadeMeGoodAt. And it really.. Disability can teach you so much if you're open to learning the lessons, like being a good ally to yourself, not going off everything that you've heard, but feeling your own experiences and understanding what your truth is and existing within the realms of that truth. And understanding what you need and what you don't need to succeed. And being willing to speak. To be willing to be like, no, I can't go to that meeting. I don't feel well right now. I just need to do this. I will catch up on notes or whatever later. I will do this when I have more energy. Like if you don't advocate for yourself, no one else will.
Emily (host):
That's amazing. Yes. Such a great way, I think, to wrap up this first episode. So that does wrap up today's episode of Voices of Academia. To you guys listening.. Listen, thank you so much. We're new at this.
Emily (host):
But we're going to learn along the way. On the next episode, we'll hear how Syreeta has learned to manage her mental health. I'm Emily King, and I'll see you next time.
Emily (host):
So that was Syreeta. It's only really now sinking in just how much she's been through, and she's an incredible woman. If you'd like to get in contact with her, she's available on Twitter @nolan_syreeta
Emily (host):
That's spelt n-o-l-a-n_s-y-r-e-e-t-a. For information found in this episode, refer to the show notes or visit our website www.voicesofacademia.com.
Emily (host):
If this episode brought anything up for you, there are mental health resources and emergency numbers available for various countries at https://checkpointorg.com/global/
Emily (host):
This podcast was written, hosted and produced by me, Emily, with support from some very special people in my life.
Emily (host):
You can find me on Twitter @EKing_Sci but I'm part of the larger Voices of Academia team. We have a website, a Twitter account @academicvoices and also share stories in blog form, with the option of them being anonymous.
Emily (host):
If you like this podcast and want to hear more stories, please like, subscribe, tell me what you think on Twitter and tell your friends. The podcast is available on Spotify, Apple podcasts and most other major listening platforms.
Emily (host):
You can also follow the Voices of Academia blog and receive notifications of new posts by email. Just head to our website www.voicesofacademia.com to sign up. If you have a mental health or wellness story to share, we absolutely want to hear from you. Whether you're a team leader, research assistant, postdoc, student, ex-academic, or any other type of researcher.
Emily (host):
Follow @academicvoices on Twitter or visit our website www.voicesofacademia.com for details on how to share your story. It's time someone gave you a voice.
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