Aditi Juneja is a lawyer, writer, and organizer living with epilepsy. She is the creator and host of Self Care Sundays, a podcast about self-care for communities of color. With past guest T. Sydney Bergeron Mikus, she is also the co-founder of the Invisible Illnesses Support Circle at The Wing in NYC. While at NYU law school, she co-created the Disability Allied Law Students Association (DALSA). In 2017, she also cofounded the Resistance Manual, a nonpartisan organization crowdsourcing content on legislative and policy issues and offering it to the public at a basic reading level in order to make it accessible to all English speakers. This project was created in partnership with StayWoke; as part of it, she also co-created OurStates.org. In 2018, she was selected by Forbes as one of the 30 Under 30 in Law & Policy. She is currently the communications manager at Protect Democracy. In this interview, we talk about what it has been like to manage her seizure disorder throughout her early life and career, and how we can make healthcare more accessible.
Key links mentioned in this episode:
Listen in as Aditi shares…
- how her mom discovered that she was having petit mal seizures when she was 3 years old – but didn’t share this news with her until she was older
- that she had her first grand mal seizure in 2001 – shortly after 9/11
- that she noticed triggers for her grand mal seizures – and realized the need for medication to dampen the triggers
- that she has spent a lot of time adjusting her medications to stay on top of her symptoms
- evidence of bias in the medical industry: that she was able to see specialists sooner because of networking connections
- that she’s been seizure-free for four years now – and she hasn’t gone this long without a seizure since high school
- that she ended up on a medication black-boxed by the FDA – meaning that it carries a high mortality or health risk rate – but that she’s been absolutely fine on it (and, as it happens, the odds of a negative reaction are low)
- her attitude about her health and quality of life: “if you’re going to live a life, it should be worth living – and be the one you want”
- that she hasn’t been injured during a seizure, but she knows plenty of people who have been
- that most epilepsy medications are downers – but she happens to be on one of the few uppers
- that she has been diagnosed with idiopathic generalized epilepsy (like 1/3 of epilepsy survivors) – because her family history of epilepsy is scarce at best
- that she has always been her own health advocate and been open to educating others about her condition – and her parents encouraged her in that direction
- do’s and don’ts for helping folks having seizures: lay them on their side; if more than 2 minutes, call 911; move dangerous furniture; don’t restrain them; and don’t put anything in their mouths
- that she has learned to tell teachers, employers, etc. about her condition early on – so they know how to handle a seizure if it happens
- that she has an aura that warns her of an oncoming seizure, and she’s able to take the appropriate precautions
- the importance of lifestyle choices and boundaries – especially when it comes to prioritizing sleep – in managing her symptoms
- that she got involved in healthcare advocacy during the ACA repeal debates, and especially after the recent death of Jakelin Caal in CBP custody; she was also involved in the disability community in law school at NYU with the foundation of the Disability Allied Law Students Association (DALSA)
- the importance of being visible as a disabled WOC
- the disparities between mental health care and physical health care in the medical industry
- why she uses PillPack
- a recognition of her privilege
- why it’s OK to speak about your disability – and also NOT to speak about it
- the importance of being intentional when creating spaces for open discussion
This episode is also sponsored by Embr Labs, creators of the Embr Wave.
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Lauren: All right guys, thank you so much for joining us. I’m here today with the lovely Aditi Juneja, who is a lawyer who lives with epilepsy. Aditi, thank you so much for joining us.
Aditi: Thank you so much for having me!
Lauren: It’s great to meet you finally. So why don’t we start from the very beginning? Tell us when and how you first realized that you had this condition.
Aditi: I didn’t actually realize it. My mom realized that something was going on when I was three years old; actually, my grandmother realized and told my mom to get me checked out. What was happening was she would notice me kind of, like, staring into space with my eyes rolled back. I was having petit mal seizures or absence seizures, where you’re briefly going in and out of consciousness for just a couple of seconds at a time. A lot of times, that type of level of epilepsy can be misdiagnosed as ADD or ADHD or a behavioral issue. What’s actually happening is you’re going in and out of consciousness. And then for me very strangely, this went away until I was about 10. I didn’t start on medication immediately; the pediatric neurologist I saw said my EEG wasn’t that abnormal, give it a little bit of time, see how I’m doing. And then it went away as far as we could tell until I was about 10. And then it came back. And I was very mad at my mom for not telling me this happened when I was three. And she was, like, “Why would I tell you [when] this went away when you were three?” (laughs)
Lauren: Especially if it’s something that went away and you didn’t have to deal with it!
Aditi: She was like, “why would I tell you?” I was like, “you just told me to pay attention!” It was very much me wanting to feel in control.
Lauren: But it is your body, so already at a very young age, you were already advocating for yourself! No wonder you ended up in the legal profession!
Aditi: Indeed! I was, like, what the hell? So, I was having petit mal or absence seizures for about a year.
And then shortly before my 11th birthday, fall 2001, I had my first grand mal seizure — and that is the type of seizure that people kind of imagine from the movies, where someone is unconscious for a couple of minutes at a time, falls to the ground, is convulsing.
It was a very eventful fall 2001. 9/11 had just happened. I had gotten my period earlier that year. It was just a lot of stuff all at once. I won an award. And then I had the seizure. And again, my pediatric neurologist, who was very cautious about overmedicating kids, said, “Sometimes these things happen as a one-off. Let’s see if it happens again before we try to fiddle with medicine and dosage.” And then early the following year in 2002 … it was January, February, something like that … I had my second seizure. And so that was when I started on more serious medications to try to deal with that. I was playing with different medications, working on that for about two years through middle school. And then in high school, I went four years being seizure-free.
And then I went to college and was no longer med-compliant and was drinking and doing all kinds of things that trigger seizures — not sleeping, all that kind of stuff. And my seizures were, once again, not controlled.
And it kind of stayed in some version of challenge with controlling. Maybe partly due to the fact that I had epilepsy. But also just largely due to lifestyle and not being med-compliant for the next several years. And then as I was starting law school, I was feeling like, I gotta get this sh*t together because I’m not going to be able to deal with this in law school. And I was also very excited about law school, so I was just invested in my life in a kind of different way. And also realizing that, if I don’t figure out what works for me now, when am I going to have a couple of months to play around with medication again? Summers between law school, you’re doing internships … and I’ll study for the Bar, then I’ll start working. When am I really going to have that time? So the summer before law school, I spent a few weeks in the hospital changing medications, partly because I was trying to really make sure it was in control. But also partly because the medications I was on, I couldn’t get pregnant on. And while I had no immediate plans to get pregnant, I knew that once I started on this trajectory, I was going to have a hard time stepping off to figure that out. So I switched medications. I started law school, and my first year of law school I did have two grand mal seizures.
Lauren: Were these brought on by the stress, or the new medication?
Aditi: I think it was neither. I think it was just not fully in control at that point. The first one, it was very hot; I’d come in from running somewhere. There were triggers there. The second one, it was during an exam. So there were triggers. But usually, for me, at least, medication serves kind of like a protection to those triggers. So I didn’t have the dosing right or the combination right. And so that summer, the Dean of the law school who I had had for constitutional law, said, “If you ever want a second opinion, I can introduce you to someone at NYU’s Comprehensive Epilepsy Center.”
And my adult neurologist, who I’d been seeing at that point it must have been over a decade, said, “I think you should get a second opinion.” Which I thought was very humble and kind of her.
Lauren: Extremely. I’m like, wow!
Aditi: Yeah. So I went to see this doctor, and I was trying to schedule an appointment that July.
Couldn’t get in, and I asked the Dean of the law school to help me go in to see him. And I ended up getting that appointment, which just tells you how broken our medical system is … it was supposed to be October and I ended up getting in that July, within a couple of weeks.
And I was nervous, so my sister went with me. That was really helpful, because she remembered pieces of my medical history and she had information about her own experiences that were helpful. And I added a medication at that time … I was on lots of different meds so I don’t remember exactly which one I came off and went on at that time. But that combination has worked.
So, I’ve been seizure-free now — it’ll be four years this fall.
Lauren: Knocking wood on there for you! (laughs) That’s great.
Aditi: No, I’m wrong. It’s not four years. When did I start law school? No, that’s right! Four years this fall.
Lauren: So the last time you went this long, you were in high school?
Aditi: Yeah, the last time I went this long, I was in high school. I just realized that in this conversation.
Lauren: You mentioned that the medications … you had to sort of think about the fact that on a particular medication, you wouldn’t be able to get pregnant … Are there considerations into the future when you’re taking these kinds of very strong and serious medications for this condition, where you have to either be thinking … okay, but what if in 10 years, or if your hormones might shift or something, that may change your needs? Is that something that you have to constantly be monitoring?
Aditi: It’s not something I have to constantly be monitoring. And it was also, the priorities change. So when I was 10, we knew that this medication was one I couldn’t get pregnant on — my neurologist said this at the time. I had tried a bunch of other medications before the one that I was on — Depakote, which is the most effective. She had said, “If you were a boy, I would have started you on it first. But, I want to find a permanent solution for you that you can be on for the rest of your life if you need to be.”
Lauren: That’s great. She was thinking ahead
Aditi: She was thinking ahead, even if I wasn’t at that point. So that was why I think I had two years of the challenge of having seizures; we were trying all these different things. And then I went on that medication as a last resort. That did work for several years. I remember this … I was taking the Lamictal for the grand mal seizures, and then the Depakote for petit mal seizures because I was having a hard time controlling them. And so through high school, it was fine. I wasn’t really thinking long-term about anything. I had a bit of a tremor here and there, but I didn’t really feel like I was experiencing super long-term side-effects. And then I was going into law school, I was coming off the Depakote. We were trying to figure out what to replace it with. And I actually replaced it with this Black Box medication called Felbatol, which no one had even suggested to me. You can’t find it anywhere if you go and look for it. If you go to the pharmacy, it takes three weeks to order it because it’s Black Boxed by the FDA. Because it could kill you, apparently. The doctor told me this, she said there were all these dangers — but it’s also potentially effective. I was feeling like, I don’t know … I want my life. I want to go to law school. How do I make this decision? And I really still trusted my pediatric neurologist, from a life-giving information perspective. I said to my mom, “I wish I could talk to her.” And she said, “You should call her,” and I said, “I don’t know if she’ll remember me” … because it had been over a decade at that point. And she said: “She’ll remember you; call her.” So I called her and I said, “I know this is weird, and you’re not my doctor anymore, but can I talk to you about this?” Her nurse had her call me back; she called me back within a day. And I kind of laid it out, and she said … it was like much more mom advice than doctor-y advice …
Lauren: That’s great!
Aditi: She said, “I listened to this podcast on NPR this morning, that was about this man who’s making kind of a decision about: Do you do something high-risk that will really improve your quality of life? Or do you live with a lower quality of life?” And she sent it to me. And I asked the doctor … because me being me … about what were the odds that I die on this medication, or have these really serious side-effects? They’re really small. It was, like, one in 10,000. I was mad that they didn’t tell me that first. I was, like, these are not high odds. And she said, “Yeah, but Aditi, if you’re not going to be one in 10,000 die … you’re either going to die or you’re not, right? That’s kind of how it works.” And I was, like, “Well, that’s true.” And she sent it to me, and I listened to it.
And I was just kind of persuaded that, if you’re going to live a life, it should be worth living. And it should be the one you want.
So I started taking that medication, and I’ve had no side-effects. I’ve looked into it, and a lot of the people who even had those issues had other pre-existing conditions that I didn’t have. So it was like my chances were very low. But it was kind of a scary big decision in that moment. And then when I wasn’t controlled for that first year of law school, I went to see my doctor and he actually took me off the Lamictal and put me on another one, Keppra. And I said, “Oh yeah, someone in my family is on this; now we’ll be like the same.” And I thought it was very funny and clever that I had made this joke, and then my sister said, “You know, there’s biology and genetics, right?” (laughs)
Lauren: So that could be the connection there!
Aditi: I was, like, “You just ruined my whole life!”
Lauren: Like, “Oh, we were going to be medication buddies?!”
Aditi: Yes, right! So through that journey, there were these choices and things to moderate and stuff. But for me, it was just always like a quality of life thing. People die having seizures that go on for a very long time. I have personally not been injured having a seizure, but I know people who have broken arms or legs falling down stairs, all kinds of stuff. And so I of course tried to balance my quality of life and other aspects.
But the fact that I might like gain a little weight, or hate taking meds … I guess I should say it like this … I’ve never experienced a side-effect that would make it worth me not taking the medication.
Lauren: Is it something where, if you were going to have the negative side-effect, it would happen more immediately? Like, you would have known early on?
Aditi: Yeah, that’s generally what they say … that I would have known definitely within the first year, probably within the first couple of months. A lot of those meds, that’s why you kind of go on them gradually. That’s why it takes so long to fiddle with them, because you’re trying to watch for potential side-effects. And I’ve always had doctors who really tried to keep me on the lowest doses of medications possible. So they weren’t always therapeutic doses, even; there were some therapeutic doses. Just because we know so little about the brain. It’s not, like, oh, this isn’t doing anything for you. It’s, like, let’s do it gradually and see if it helps. And so I’ve always also just been on very low doses of my medications.
Lauren: Okay. So you’ve been able to continue on those low doses, too. Which is great.
Aditi: Yeah. I would say the one thing that was kind of interesting was before the last one, when they were introducing me to this medication …
I remember the doctor saying, “You’re going to law school; you need your your brain to work.” Most medications … because epilepsy is a firestorm in your brain of, like, synapses … they’re downers. She said, “There’s this one that’s actually kind of an upper.” That’s the one that I’m on.
And she was, like, “You should be on that, because you need your brain to function. You can’t be slow.” And when I switched, my brain felt clear for the first time in years. It used to be that I would have a seizure and that would feel very clarifying to me, like I had cleared some discharge or something in my brain. And after I switched to that, I could see and feel a difference in my pace of thinking.
Lauren: So you knew it was the right decision, anyway.
Aditi: Yeah, it just felt different. But what’s weird is, we had asked my pediatric neurologist the whole way through: “Do we think this is affecting my cognitive ability, my ability to think?” And she said, no. And there was no real proof of it. But my dad always said that he could kind of tell that I was thinking a little bit slower than I used to; it would just take a little longer to grasp a concept or think through something. But the reality was … and I don’t say this to brag, it’s just true … that was still a pretty normal pace. It wasn’t like I was slowed down. And now I think, I think faster than many people around me. But that feels like my more normal.
Lauren: Yeah, it’s your pace. That’s your normal pace.
Aditi: Yeah. There’s something weird about it. It wasn’t observable in the sense that … when a doctor is looking at you, they’re looking at you relative to your peer group. And when my dad was looking at me, he was looking at me relative to me before.
Lauren: Yeah, so he was looking at you and going, ‘Well, she’s usually faster than the average. And now she’s like normal speed.’
Lauren: So, you mentioned earlier about your sister bringing up genetics and biology. Did your doctors ever take a root cause approach? Did they ever look into your neurology and go like, “Gee, where did this epilepsy develop from?” And what has that looked like in terms of not only your family history, but also if you plan to have a family of your own?
Aditi: So …
I have idiopathic generalized epilepsy — which means they don’t know why I have it, and it happens in my whole brain.
Which means it’s not like when people have temporal lobe epilepsy, which is in one part of their brain and where people do surgeries and you can go in and figure that out. For me, it happens everywhere. So there’s no physical … in terms of this one area of the brain … approach. It’s idiopathic because we look at my genetic history … I have an aunt who has had one seizure once. But lots of people have one seizure once. There was no past previous family history. And as a young child, I didn’t have a series of high fevers; I never had hit my head. There was nothing that really indicated some sort of root cause.
Lauren: Wow, that’s really interesting. Do you know if there are any statistics about how many people tend to have it genetically and how many people are idiopathic?
Aditi: It’s …
… almost a third of people are idiopathic. A lot of people who have epilepsy don’t know why they have it.
Lauren: That’s really interesting. So, you also mentioned that your dad and your mom and your sister have all been involved in your health journey. Did you ever discover that you needed a personal advocate at any point in this journey to … finding the right medication? Obviously, you started this journey as a kid, too. So I’m sure your parents were very involved. But did you find that … even now when you go for checkups, do you sometimes need someone to come with you? Or is it really that you’re your own advocate now?
Aditi: I think I’ve actually always been my own advocate. And I think it was really encouraged by my parents. I had my first seizure at school, like a lot of people do. And afterwards, my classmates were really nervous and kind of weird — because they didn’t understand what had happened. And so I asked … I went around with the school nurse … she came with me by my request … to explain it to all the kids in my unit.
Lauren: That’s really cool!
Aditi: Yeah. And then every year after that, I was the one who always explained to my teachers what this thing was.
My dad helped me make these index cards. It was just before the digital age! On one side was emergency contacts, and on the other side was: If there is a seizure, do this … don’t do this.
So it was really easy to give to a teacher, or if I was going on a school trip to a chaperone or something.
Lauren: For someone listening to the podcast now, are there do’s and don’ts that are important to share?
Aditi: The do’s are just to make sure that the person doesn’t physically hurt themselves.
So you protect the person’s head. You lay them on their side so that they’re not choking on their own saliva. You try to time it; for me, if it’s longer than two minutes, you call 911. It just passes, and then you help the person rest.
So beyond that, it’s not much more than that. If I had a seizure right now … I’m sitting next to a big table … ideally, someone would move it away, right? So I didn’t hit myself on it. But beyond that, there’s nothing to do. And then the don’ts are really from bad information and rumors. Like, you can’t choke on your own tongue. You’re not supposed to put anything in the person’s mouth. You shouldn’t try to restrain the person who’s having a seizure, because you’re convulsing with such force, you could actually hurt someone by trying to restrain them or stop their shaking. Beyond that, there’s nothing else.
Lauren: So, it sounds like your doctors have been with you every step of the way. You’ve never had any problems. But have you ever been in positions where you’ve had to justify to people that you had this illness? Either for your safety, or for their own? When maybe they didn’t believe you at first?
Aditi: I don’t think I’ve been in situations where someone didn’t believe me. But I think I’ve been in situations where people didn’t really get it. So, I don’t think anyone was like, “No, you don’t have epilepsy.” I think it was more like … sometimes I have a hard time in the morning because I have petit mals and I need to start my workday a little bit later. And at work, it’s like, ‘Well, we know we have to make accommodations; get a doctor’s note, fill out this form …’ But I’ve kind of felt like … and this is not my current job … but in the past on previous jobs or internships, feeling like I was being judged a little bit for that. Or like having to take a sick day, and feeling like I was being judged for that. And so it wasn’t so much disbelief …
Lauren: As it was a lack of understanding and compassion.
Lauren: Was that something where you had informed your employers, in particular, that you had epilepsy as well?
Aditi: So it changed.
What I realized all through this journey was that early on, I would just not tell people until I had to tell people. And then I realized that when you tell people after you have to tell them, there’s some skepticism that comes with it … “Why am I only hearing about this now?”
I learned that through school. In college, it would happen that I would have a seizure and I would tell a professor, “I have to be out; I had a seizure.” And they would be, like, “What the f*ck … I didn’t know you had epilepsy.” They never said that! But it was my feeling that they were a little bit skeptical of it because they hadn’t been informed ahead of time. So when I started law school, I would tell professors at the beginning of a semester, and I would tell employers or where I was doing an internship, at the beginning …
Lauren: But after you were hired.
Aditi: After I was hired, but once I started. Just to avoid the potential of … “By the way, this is a thing … if it comes up, I want you to know this.” I was trying to avoid the situation where if it did come up, people were skeptical that it was real.
Lauren: So, how are you balancing the demands of work and life … when you’re being aware of a seizure coming on, if you’re able to notice it coming on? I know you’ve been seizure-free for four years now. But what is it like balancing stress and other people’s needs in your work life, and a work life that is obviously very meaningful to you because there’s a lot of advocacy work involved … with the demands that your body puts on you?
I can tell if I’m going to have a seizure. I have an aura, so I think that’s a big reason why I haven’t hurt myself having a seizure, because I’ve been able to put myself in a safe situation.
Even though I’ve not had a seizure, I manage my epilepsy every day — meaning that I take my medications every day, I have to make sure I sleep a certain number of hours every day, I have to make sure I’m not drinking, if I’m on my period I’m making sure I’m getting extra rest. There’s lots of management of my epilepsy. And I think that at this stage in my life, it has gotten easier because my life is more routinized. Whereas, I think when I was going through transitions every couple of years — like finishing college, now I’m working, and I’m going back to school, I’m in school but now I’m doing an internship, now I’m changing my classes — it was much more hard to get into a rhythm because it was shifting constantly. But by my second year of law school, I started paying attention when I would sign up for classes … like, am I going to have a bunch of exams … I would try to take classes where I’d have a mix of exams and papers and clinics, so that I wouldn’t end up having this one or two weeks where I was, like, losing my mind studying, because I have to sleep. In my current job, I’ve been doing a fair amount of traveling, and I just figured out that for me to sleep and feel okay, I’ll get there a night early. Or I’ll leave a day later, and just not be doing these kind of quick turnarounds, or leaving at crazy hours. I’m not going to wake up at 5am for a flight, I’m going to avoid taking a red eye back. And so, for me, a lot of it has just been about boundaries. When I was younger, not drinking felt like a really big deal. Now I’ve got a lot of friends who don’t drink, it doesn’t feel that weird.
Lauren: Yeah, it gets so different when you’re, like, an adult!
Aditi: In college, being, like, “I can’t drink” or, “I can’t drink to excess”, feels like you’re so isolated.
Lauren: Yeah, and it’s also like you’re losing out on the experience of f*cking up really, so that you don’t have to do it later! (laughs)
Aditi: I’m 28, I’ll be 29. When we drink, we go out for a drink or two. Someone will come over and have a glass of wine. And if they’re pouring themselves three glasses of wine and I’m nursing the one, it doesn’t make a difference. That’s not the point of the interaction. Whether it’s at work or other places, now I know a fair number of recovering alcoholics. The fact that I’m not drinking …
Lauren: Is good for them.
Aditi: People don’t know … are you not drinking because you’re pregnant? Are you not drinking because you don’t like to drink? Or you’re not drinking for religion?
I’m in a much more diverse atmosphere, where any kind of choice you make or don’t make seems less conspicuous — because people are living in such different ways.
Lauren: Well, and having said that, there are probably way more reasons that people are not drinking than that they are. As you say, there are a lot of possibilities out there. Has your experience turned into advocacy on a larger scale, too? I know that you work in legal advocacy. So in terms of the health side of advocacy, what does that look like for you, given your experiences?
Aditi: My day job is not centered around this type of advocacy. I do advocacy in my work, but not this particular subset of things. But there are a few things that I do. Around the ACA repeal was when I started writing and talking about health care, health care reform, my experiences with epilepsy. After Jakelin Call died in CBP custody after having a seizure, I wrote an op-ed about that.
‘I’m an immigrant, I’m brown, and I have epilepsy. But when I have seizures, this country took care of me. They did not do that for her.’
And so for me, my entry into advocacy around disability was through writing. And then my second year of law school, I had a mentee who had a disability. She was navigating law school, and I was also navigating law school with a disability — with very little institutional support. There wasn’t a ton of thoughtfulness around community and avenues of advocacy. And so we created the Disability Allied Law Students Association at NYU, and that became a community space and an educational space, a way for us to be considered one of the affinity groups. It gave us a platform for advocacy with the administration. I feel like they were always receptive; it wasn’t like we had some list of demands. But the avenues weren’t clear until this kind of organization. It was always a one-off, and then it became a collective — and that was kind of different as an experience. It started actually with that, probably, with the Disability Allied Law Students Association. Seeing another student with a disability made me realize why it was important to say, ‘I have a disability.’ I don’t think I really identified that way. Why it was important for me to be vocal and visible. And then we created this organization. And that was my third year of law school, and that fall was when Donald Trump got elected.
So then the following spring, as the ACA repeal fight was happening, I blasted out this Twitter thread trying to explain how the Trump proposal for healthcare would affect people like me … and basically use my own story to say, ‘I will not have access to healthcare under the system.’
Using my personal narrative to explain the very complicated policy that was that proposal. And someone at NPR reached out to me and asked me to turn it into an op-ed, and she helped me to do that.
Lauren: That’s really cool.
Aditi: Yeah, since then I have written pieces here and there on it. That spring of 2017, I was asked to speak at Personal Democracy Forum about my work on an organization I created called the Resistance Manual. So I was running this national organization during my last semester of law school, after Trump was elected, which was very absurd. I was to speak at this conference and they asked me what I wanted to talk about. I said …
… the thing that I don’t see people talking about is disability in any kind of positive framework. And I wanted to talk about how my epilepsy had really shaped and informed my leadership style and my ability to manage a national organization at that scale very thoughtfully.
I had so many volunteers with disabilities because I had shaped our work processes and our flows in such a way that they were flexible — inclusive for someone like me, because it was my organization. And as a result, it was therefore inclusive to lots of other types of people as well, with other issues. And so I gave that talk there. Those were the early set of things. And then, recently, over the past year, I started leading — with someone who was on your podcast in the past, Sydney [T. Sydney Bergeron Mikus] at The Wing, an Invisible Illness Support Circle. So, it’s been like this mix of stuff.
Lauren: But it’s nice because it sounds like it’s a mix of on-the-ground, grassroots stuff, and then larger organizations that you’re attaching yourself to, as well. So you’re getting the word out in both ways, which are really important. Do you ever feel an extra pressure, as well, being a woman of color who’s representing the disability space — especially what you said in relation to what happened around the ACA repeal talks and with what’s been happening legally in this country in terms of the way in which people with disabilities are perceived? Is there an extra mantle of responsibility there for you? Or is it a different experience that you can see very clearly?
Aditi: I think I had the two things separated in my head.
Because I came into my racial awareness and consciousness so much earlier, the idea of my racial identity and my gender identity as a political identity was clear to me so much earlier in my life. And it wasn’t really until law school that the fact that I had epilepsy became political to me.
I didn’t comprehend it that way. And it was really through the work of intersectional activists online and on social media … like Vilissa Thompson, like Alice Wong … that I really started to understand there’s an intersection between disability, race and gender. I didn’t see it as a political identity prior to that. For me, I think the extra burden that I feel around this is just that I have to be visible. I didn’t understand that disability in the media or on TV, or the experts who can talk about it or write about it, are often white. They’re often doctors; they’re not people who actually have these challenges. And what’s worse is, there’s some dichotomy between those who are impacted and those who have disabilities. It doesn’t make any sense, because you don’t get a white expert on race, and then a black person who’s directly impacted, to talk about race. You can get Sherrilyn Ifill, who is an excellent black lawyer, to talk about the law and to talk about race. During the ACA fight, I wrote an article slamming the media for its coverage, saying … you quote doctors, or you show pictures of people with disabilities as props, but you don’t recognize their own advocacy. This was around when ADAPT staged a protest on the Hill.
The coverage was of Stephanie Woodward in handcuffs and in the pink wheelchair, right? But it didn’t have her name. It didn’t mention that she’s a lawyer.
Lauren: Just a disabled person.
Aditi: Yeah, that she had organized that protest. And so they really removed her agency and power and really treated her as a prop. And ADAPT is very thoughtful about ableism in the media; it navigates these things beautifully and well. But I was super outraged; I was, like, these are not just pictures. These are people who have all this knowledge. And it’s not just that people with disabilities have healthcare, can talk about healthcare from their own lived experiences. You have people with disabilities who are lawyers, who understand policy, who do this as their job. And so it just feels super strange that you would pick a non-disabled person when you could have someone who has both experiences.
Lauren: Yes, absolutely. Particularly because that’s when you’re bridging the gap between the invisible and the visible, as well. Why not have all of those things be visible? You’re talking about this advocacy work in terms of the press, and where the press is letting us down. What about the healthcare system? In what ways is our healthcare system working for patients now? And in what ways does it need improvement, particularly with regard to chronic illness and disability?
Aditi: So, I’m not a healthcare policy expert. I can speak really just from my own experience. I think, for me, the biggest thing that I’ve realized over time where the healthcare system really lets us down is, there’s just a huge separation between mental health care and physical challenges you’re dealing with. And I think for me, some of the reasons that my epilepsy was not under control, I was talking about medical … being compliant and taking my medications, and feeling very isolated and alone and different from my peers. And I never had a neurologist who asked, “Why aren’t you taking your medicine?” It was just, “Take your medicine.” And I was, like, “Okay, I’ll take it.” But there was never this question. The question of like, why are you not taking it? Let’s sit here and …
Lauren: “… let’s unpack that.”
Aditi: Let’s unpack that. Right. Let’s have a conversation. And for me, the big game changer where I became really med-compliant … I started using PillPack, which pre-packages your medicine for you. And you can throw it away, so I don’t have bottles rattling around in my purse all day. And it’s disposable and you don’t have to sit down every Sunday and put your medicine in all these different containers. It’s less mental … you have to think about being on meds a lot less. In a given moment. That was a thing I could have figured out much sooner if someone had asked me why I don’t take my medication.
Lauren: Yeah, but PillPack is a relatively new company.
Aditi: Right. But it’s not even about the resource. I didn’t realize that what was going on with me was, I didn’t want to have to think about it. I could have found some other solve for that. If I had understood what was going on or that I felt weird having bottles rattling around in my purse, I could have figured out a fix for that, if I had been prompted to think about why. And had the why taken seriously — as opposed to: Just do it.
Lauren: Yeah. It’s never that simple.
So for me, that’s where I think there’s the biggest gap, just treating mental health. Our system also, just in terms of how it’s paid for, co-pays … all of that is just totally separate from “physical health care”. But it’s so deeply related.
It feels really strange to me. Particularly for someone managing a chronic illness. Because it’s not a one-time thing. It’s a constant journey. I feel like I’m in a pretty good place with it, and I manage it … and I give myself permission not to manage it in certain ways where I feel like that will be safe for me. But there are ebbs and flows of that.
Lauren: Absolutely, yeah. So it’s almost as if mental health needs to be part of any kind of comprehensive health care plan, but particularly if you’re someone with a chronic illness or disability, right?
Lauren: We’ve covered a lot. I wondered if there was anything you wanted to add before we get into our Top Three Lists (because that’s how I like to wrap up my interviews)? But is there anything else you want to share about your experience and what you’ve learned as someone living in the disability space, and advocating in that space, too?
I just think that I’ve been very privileged, and I think that I should name that.
I had parents who really advocated for me, didn’t try to limit me in any way. I had teachers and schools that were very accommodating of me and my needs.
Lauren: But that’s because you made them be accommodating, too. So let’s give you some credit there!
Aditi: To some degree. I didn’t get a ton of pushback on it, you know? And I think that I should just name that. I think about it a lot. No one ever tried to put me in a special ed class; my life would have been so different if that had happened.
Lauren: And that does happen to people with epilepsy.
Aditi: It happens all the time. And so I think about that a lot.
I think I got lucky in a lot of different ways, just by circumstance of birth. I say that just to say that everyone’s disability journey with this stuff is different.
Someone in my own family takes a similar medication as me, and that person’s not comfortable being public, talking about this type of stuff. And that’s okay. That person wouldn’t say that they have a disability; that’s okay. I wouldn’t want someone to listen to this, and either think that my experience is radically different than theirs, day-to-day … lived. Or that they’re doing something wrong because they don’t approach it the way that I do. I just feel like it’s different. And we make choices. If I had a different type of job, or I went to a less prestigious law school, frankly, I would feel much more nervous about disclosing this publicly. I think if I thought about it more, if I really thought like, ‘Oh, God, I might not be able to get a job ever for disclosing this.’ I was just so f*cking pissed that I just disclosed it. And after that, it was public.
Lauren: It’s really interesting, yeah. Because you have just taken the leap every time. There’s never been a hesitation about it. And, as you say, I guess that does come from a place of privilege. But also, I think it comes from … you know, I say this a lot in interviews … it’s always us Type A people who end up with some kind of chronic illness or disability! We’re the go-getters, and for whatever reason, our bodies are telling us we need to slow our roll a little bit. But it’s really great that you’re turning what could have been something awful, but has actually been a very positive experience for you, it sounds like, into work that will help other people. And that’s the important thing here, isn’t it? It’s that it’s not just about one person; it’s about a whole group of people. And you’re participating with that group.
Aditi: But there are times where it’s just about me!
Lauren: And also, it can be! We’re able to recognize when we’re allowed to be “selfish”. I don’t think that’s the right word. But when we’re allowed to take those moments for ourselves — because you need to get the right amount of sleep, you need to do those things to take care of yourself in order to function.
Aditi: And also, you’re not always feeling like you’re ready to be in community with people.
Not all communities are safe. Not all communities feel good for people.
Sydney and I have been really thoughtful about the type of community and space we wanted to create in The Wing’s Invisible Illness Support Circle. And really intentional about trying to set some ground rules around that, to make sure people feel comfortable sharing, and thinking about how we acknowledge the various privileges we have in the room — and don’t impose our experiences on to others in the room.
I feel like particularly in the kind of disability advocacy space, they’re not always safe spaces for people of color, for queer people.
White disabled people are racist, too. And so we get to choose who we want to be in community with, and when. We don’t owe people our presence just because we have some political identity.
Lauren: Yeah, that’s a really wonderfully put expression of thought; I completely agree. So, let’s get on to these Top Three Lists! The first one is, top three tips for someone who suspects they might have something off, might be entering the world of chronic invisible illness or disability. What would you recommend for a prospective patient, if you will?
Be kind to yourself. Trust yourself. And take your time.
Lauren: I love that. We need that on a T-shirt! You need to make those T- shirts with The Wing, have them at the Invisible Illness Support Circle. That’s really lovely. And it sounds like that’s exactly what you’ve done. And look how successful you’ve been.
Aditi: Not always. I’ve not always been kind to myself, or gentle with myself. It’s well-earned advice.
Lauren: Exactly. We’ve got to walk through the fire to find out what works and doesn’t work, don’t we? So, what about Top Three Things that give you joy? So whether it’s comfort activities, whether it’s guilty pleasures, secret indulgences … What are three things that you have in your life that you turn to, where they give you joy?
Aditi: It’s very cheesy, but for me, it’s my friends … my family … and, I think, reading and face masks, and boring self-care!
Lauren: That’s not boring at all. I think it’s fantastic. I think sometimes we need the reminder to turn to those people, and turn to those simple rituals that give us time for ourselves, don’t we? Well, Aditi, it has been such a lovely experience having you on the show. Where can our listeners find you and your work if they’re looking for you?
Lauren: Fabulous, and we’ll link to that, and to all of the organizations that you mentioned as well in this interview, on our episode page. Aditi, thank you so much. It’s been such a pleasure.
Aditi: Thank you so much for having me.