BLACK:
Today is July 31, 2019. I'm here with Konyin Adewumi. Did I pronounce
your last name correctly?
ADEWUMI:
Yes, you did.
BLACK:
Okay, excellent. (We are) interviewing for the Center for the Study of
Women's Chemical Entanglements Oral History Project. So, Konyin, can you
tell me a little bit about your childhood and your teenage years?
ADEWUMI:
Just in general, or in the context of the oral history?
BLACK:
Basically, how you grew up––what did your parents do, how many siblings
you have––basic stuff like that.
ADEWUMI:
I grew up in multiple places. I was born in Nigeria; I left Nigeria when
I was about three or four. Then I grew up in London for a bit. We bopped
around a little bit and moved to California, and that's where I spent
most of my time. I did elementary school, middle school, and high school
in California. I have one sister. She was older than me, by eighteen
months––I mean, depending on who you ask––she thought it was years. My
mother was an RN (registered nurse), and my father stayed at home with
us. I grew up in a little suburb of Corona, California. Not a very
exciting place to be. But it was great. I was there until I was
eighteen, and then I moved to Pittsburgh.
BLACK:
And then you moved to where?
ADEWUMI:
Pittsburgh.
BLACK:
Pittsburgh, cool. So, just trying to think of your first foray into
having (Multiple Chemical Sensitivity) MCS––did you have any issues with
having chemical sensitivities within the home while you were growing up?
ADEWUMI:
As in an exposure to content, or just in my house?
BLACK:
Yeah.
ADEWUMI:
I'm allergic to fragrance, I guess I should start there. I'm allergic to
fragrance. What was really strange about it is that it was only if it
made contact with my face. Home was a really big part of it––it was my
bathroom, my bedroom, my bed in particular where I slept, my towel. I
had to be very cognizant of what was going to touch my face. Because if
I put my head on a pillow that someone had laid in with hair product
that had fragrance in it, then I would get hives on my face or just
these rashes that I never really understood.
BLACK:
This was only happening with fragrance-related stuff?
ADEWUMI:
It was. It would happen if anything that had added fragrance came into
contact with my face. It was the strangest thing because it doesn't
really fall into any category of allergies, especially since it was so
localized––touching my face. I could put fragrance on my arms, and I'd
be fine, but if I put it on my hand and I touched my face, then a couple
hours later, I would have rashes.
BLACK:
Wow.
ADEWUMI:
Yeah. We never really understood why.
BLACK:
When did you show signs of this? This was when you were a child, when
you were a teenager?
ADEWUMI:
It started when I was a child. So, I don't remember the day it
started––I just know my whole life, growing up, was always navigating
how to avoid getting fragrance on my face. I would say my mother is a
champion for being willing to do some searching.
BLACK:
How was this sensitivity perceived by your family then?
ADEWUMI:
The only people that really knew about it were my immediate family. I
would say my parents probably knew and understood it before I did,
because it would just be like these things start showing up on my face,
and then what we deduced was that it was something that was being rubbed
on my face. My parents were really great about it, or very
hyper-vigilant about it, is what I would say––very helpful. It was just
nothing I ever really talked about to people outside of my family
because for one, I never really slept over at people's houses. I didn't
have to worry about other people's products touching my face. I never
really went to camp until the eighth grade, so I never actually had to
worry about being in control of what touches my face outside, luckily.
Unless I stayed at a family member's house, but by then I just knew, for
example––don't use this towel on my face, or hopefully their pillowcase
is new––and I understood that I can't just jump into a pillow with other
people.
BLACK:
Speaking of outside the home, how did you even navigate going to school?
Was it okay as long as you didn't touch anything that was fragranced at
school on your face, and you would be okay? Give me a picture of what it
was like going to school.
ADEWUMI:
It was fine going to school. It wasn't something that was a big
impediment, as long as I didn't, say, put on sparkly lotion and then rub
it on my face, or stuff like that, I was fine. It wasn't super
immediate; it would show up a bit later. Other than being embarrassed
about being the girl with rashes on her face––they weren't particularly
blistery or anything; my face would just be covered in rashes.
It didn't particularly impede going to school. It was just like, duck and
cover if someone is, around middle school, bringing out perfume or
something. Then it would be duck and cover so that their perfume doesn't
smack me in the face. Or in middle school, locker room stuff––then I'm
like, "Oh, hey, don't spray that in my direction."
BLACK:
By the time you get to, let's say, medical school, when I imagine that
you are having to literally scrub yourself down multiple times any time
you're going into the surgery room––I could be making this up. But what
is it like being a doctor, and having to always come into contact with
different medicines or different soaps that you have to use in order to
sterilize yourself?
ADEWUMI:
I'm not a doctor yet, so I haven't actually crossed that bridge. But I
will also say that the reaction to it has drastically decreased over
time. What I have also found is that what used to be hives then turned
into rashes, then stopped appearing as often, so then I could be less
hypervigilant about it––but this happened in college. Sometime in
college, I found that I was less sensitive to––actually very
interestingly––all my allergies in general. It wasn't just the fragrance
allergies that decreased; it was all my other allergies too.
BLACK:
Okay. What other allergies do you have?
00:11:31
ADEWUMI:
I'm allergic to alcohol. What was fascinating is that if I drink,
whatever was making tight contact with my skin, I would develop hives
around it. Or it would be on my side or on my back, where your bra strap
is, for example, because it's putting pressure on your skin. And it was
all kinds of alcohol––it was wheat alcohol, potato alcohol. It was wine,
beers, any of it. Not that I knew before I was twenty-one. It would
result in me having hives. Never understood why.
What was interesting was, I never actually thought that I could just go
ask the doctor. It was not something that occurred to me, to go ask why
this is happening.
It also had happened with lemon and yellow pepper. Yellow things would
make me break out in really intense hives. Nothing was ever
anaphylactic; it was just hives. The fragrance one is the only thing
that was localized, everything else would be my entire body. So if I
even ate anything that had lemons in it, my entire body would break out
in hives. That decreased over time. But what was actually really funny
is I had sangria two weeks ago. I didn't know that they had squeezed
lemons into the sangria, and the combination of the allergies––my whole
face started getting really red, and then my arm started burning up, and
I was just very itchy.
They were just really random allergies that didn't impede life; it just
resulted in a lot of avoiding. In particular, the two I would say are
(difficult) are fragrance and lemons, because I don't think people
realize how much fragrance is in every product that you put on your body
whatsoever. Even if it's hypoallergenic––my mom and I will use the
hypoallergenic, but that's also fragranced. Lemons are in so many things
that we ingest casually that people don't feel the need to put it in the
ingredients. I've had restaurants where I've been like, "I can't have
lemon," and they'll still garnish my plate with lemon.
BLACK:
Wow, yeah.
ADEWUMI:
The fragrance thing doesn't seem like an exciting one, but it's very
interesting, because it's a little thing that I don't think I would have
ever thought about.
BLACK:
So, I know––
ADEWUMI:
It has also greatly––
BLACK:
It's okay, continue.
ADEWUMI:
––it also has greatly influenced what I use today. I would say I don't
experience it often, or experience it at all, but I also, for the most
part, make my own lotion, or stick to fragrance-free lotion. I do the
whole fragrance-free lotion, and then I buy oils and shea butter, and
then I just mix my own lotion. To this day, I won't go to a grocery
store and pick up a lotion and buy it, unless it's fragrance-free
Aveeno––it's pretty much the only one that I keep around. I don't even
think I'm allergic to it, but I just don't use casual hair lotion––the
little squirty lotions that people get from Bed Bath and Beyond and
stuff. I'm adverse to it and sensitive.
BLACK:
You were saying that in college your reaction towards fragrance and
things that were yellow decreased? How did you begin to notice that, and
what was it like having to navigate (that)? I don't know if you had an
opportunity to go to school away from your family; how was that––taking
care of yourself, trying to avoid your sensitivities and your allergic
reactions during college?
ADEWUMI:
I have actually thought about this. I would say in all honesty, I
didn't. That, I think, may or may not have contributed to it. But it
became increasingly harder to, and so I became less vigilant about it.
Social events in high school didn't involve drinking, so I didn't drink.
When I was in college, I was like, "Well, I just want to try it," and I
would be allergic to it, and I would still drink it, especially since
there were hives all over my body. If it looked good, or if it was fun,
or I wanted to I would just drink it. Eventually, it just stopped being
as intense. That was for the alcohol. The fragrance was a lot of not
being able to control your pillow, or not being interested in
controlling it––I would say that in college, in trying to understand
balance of multiple classes and freedom and working, especially since it
was my first time living as an adult on the East Coast, so far away from
my family––so really adhering to what were my allergies fell on the back
burner of my priorities. What would happen particularly for the alcohol
allergy–– Say it was fun, or not even fun. Say it was a particularly
difficult time in the school year, and you're not really going out,
you're not really socializing, you're just hyper-focused––the next time
I would drink, I would realize that they came back intensely.
BLACK:
Really, wow.
00:19:27
ADEWUMI:
That's how I noticed that it was going away. My reaction during spring
break, versus my reaction during finals week or something like that
would be different. Which was weird––looking back at that lot of my
life––I just never asked anyone. I was just like, "hmm, okay, I have
hives again." Because I had them my whole life, it wasn't weird. Other
people thought it was strange. When I would tell it to people, and they
would see it, they would be like, "That's weird, why aren't you freaking
out." And I would just say, "I've had hives my whole life; I've had
allergic reactions to things."
Sometimes we wouldn't even know what caused it; I would go to sleep when
I was a kid covered in calamine lotion to make it go away. There were
times where my mom and I couldn't even figure out what caused such an
intense reaction of hives. The last really intense one I had was when I
lived in England, and that was how I learned I was allergic to yellow
peppers. And then one really intense one when I was in fourth grade––I
ended having to miss school and go to sleep covered in calamine lotion
for two days. We never figured out what it was.
BLACK:
When did doctors come into play, and what was the language that they
were using? Were they just saying that you have this allergic reaction
to X, Y and Z? I know you were saying that it was normal for you to have
these reactions, just because it started happening when you were so
young, so it became normalized for you. Was there a point in time when
your parents took you to the doctor?
ADEWUMI:
No, I never saw a doctor about it. I will say that my mom became an RN
after we moved to America. We were a single-car household. We were very
much living your immigrant life. She was working a lot; she was going to
school a lot. I never even thought about it as something that I need to
see a doctor for. I just thought I was strange, that weird kid that gets
hives randomly. You watch TV and there's that weird kid that just has
something. I had hives, and I didn't sleep well. I would compare it to
having a colicky baby. I was like a colicky child. Maybe I would show up
with hives and not be able to sleep for a week.
BLACK:
Whoa, okay. In college, you're away from your parents––did you do your
own research on how to avoid triggering your triggering your allergies
or your hives? Did you do any Internet researching by yourself? Or is
this all stuff that you were continuing to do, something that your mom
was teaching you, especially since she was going to school to be an RN?
ADEWUMI:
I would say a lot of it came from trial and error of the team, which was
a lot of times where we would forget about something, or forget about
the allergies––I remember, for example, my first perm. We would forget
about the allergy, and then it would come up. But that had been my life
so long that by then things were things were clockwork. Even to this
day, things are clockwork––I get into the shower, and I wash my body
from my neck down. I never wash my body and my face at the same time. I
mastered how to wash my hair without ever getting any water to touch my
face. To this day, I can successfully wash my hair and not have any
water come into contact with my face. When I was a kid it was really
just my mother getting in there and washing my hair for me.
The thing that I did look up the most, because it was the most obvious,
was the alcohol allergy. Because it was weird, especially the more I
would tell people about it, because it wasn't a type of alcohol––it
wasn't like I was allergic to wheat. Some people can't drink beer. It
wasn't just the fermentation process, and I also wasn't allergic to
kombucha. That was something that I did a lot of research into.
I will also point out about the fragrance allergy––it's hard because
there's things to me that are so normal. I have talked to a doctor about
the fragrance allergy, but I did it during grad school, because it came
up as a potential (problem). I didn't tell the doctor, "Oh, I'm allergic
to fragrance." I was like, "Hey, when I run and my pores open, I get
really incredibly itchy, and then my thighs start getting hives." My
primary care practitioner is convinced that it's whatever I'm putting on
my body that my body is reacting to when my pores open. Because it also
happens in the shower––whenever it gets really hot and steamy in the
shower, I get really itchy. And when I run, I get itchy. I've been given
antihistamines to combat it, which is a weird concept––to say I take
antihistamines to take a shower.
BLACK:
I'd like to switch our attention to now. I know that you're a public
health researcher at Duke (University).
ADEWUMI:
Yes.
BLACK:
I was just wondering how your experience with your allergic reactions
towards fragranced products influenced your research on Black maternal
health now, you going into public health? If there's any sort of
correlation with you having to navigate these allergic reactions to your
interest in public health?
ADEWUMI:
The biggest influence on me would be awareness of othering, and nuances
of othering, and what people can and can't do. And people who are
relegated to categories that are the other––and how that compounds.
That goes back to the hair products. You go to the store, and the ethnic
hair care is half an aisle, really just one-fourth of an aisle. So
you're at your ethnic hair care one-fourth of an aisle. This was back in
2000s, so––I want to say––before the boom of Shea Moisture. Finding
something that worked with my hair, that worked with my allergy, was
just not an option. The only shampoo that I could find was Aveeno, and I
couldn't put that in my hair. There were virtually no Black hair care
products that worked with my allergy.
I had to work around the allergy. I would use the product, but it would
be my mom getting in the shower and washing my hair, so that we could
make sure that it wouldn't hit my face. Or there's having to tie your
hair up so it would stay nice, but it was also having to tie my hair up
so it wouldn't make contact with my pillow in case my face makes contact
with my pillow.
BLACK:
I see.
ADEWUMI:
On top of that, my family go to the store and had to buy hypoallergenic
things for me. So then I was that colicky kid that they were buying
hypoallergenic stuff for. But while my mom was going to school and
working, money wasn't floating on trees. Having to buy specialized
things to accommodate that and knowing that the special things cost
more. The face lotions and stuff––I would have to get hypoallergenic
stuff, and then we have to search for hypoallergenic stuff without
fragrance. If we found something that works, that would be what we
bought, regardless of the fact that there's probably ten products that
are cheaper, and more within our budget.
It also meant that I was hyper-aware of the cost of what it took to
lotion or just wash my face, and the time it took to be able to do my
hair. It would be my mom doing my hair, or my sister. The time and being
aware of something else––compounding with Blackness, compounding with
womanhood––is what drives me. A lot of that does come from being Black,
being woman, being immigrant, and being allergic to a lot of things.
And it also comes with some deeply rooted insecurities, right? I couldn't
wear pretty-smelling things. For a while I didn't want the
pretty-smelling things to come in contact with my clothes and have those
clothes in contact with my face.
It's not a direct point A to point B correlation, but I'm really
interested in Black female bodies in general, and how being relegated to
the category of Black and relegated to the category of woman affects
your health outcome, particularly around domestic violence and
infectious disease.
BLACK:
Okay.
ADEWUMI:
If you have one, you may have the other––the two are not mutually
exclusive things. That's particularly what I'm interested in, what I
study. Currently, what I'm doing is preterm birth work, because that in
itself is an anomaly that's specific to Black American women, and it's
an experience of othering in that you have to navigate this world like,
"Oh, will I have a preterm birth? Will I be able to hold my pregnancy
for the (unclear)? Will I be able to avoid stressors? Will I be able to
get to clinic once a week to get my shot to prevent preterm birth?"
While not talking about it, while thinking, "I'm the only one that has
it." It's in everything that we see in public health––it's in domestic
violence, in intimate partner violence, in infectious disease.
Statistically, it's higher in communities of color, and less talked
about in communities of color. The two definitely go hand in hand.
Part of being able to enter this world or navigate this world with a
certain level of understanding is to be deeper and deeper into
experiences of othering. The chemicals, and the fragrance allergy in
particular, were a compounding factor of othering, because it's still to
this day something that I'm paying attention to. Not to generalize other
people, but my experience is that I've had to pay attention to
things––pay attention to being a woman, pay attention to being Black,
especially in predominantly white institutions, especially in
predominately male spaces throughout the diaspora. That really does
impact your work––how you see things and what you want to be.
I definitely think that it was a very unique experience, because I've
never met anyone else who was allergic to fragrance. Everyone looks at
me like I'm weird when I say it. It comes with like, "How do you know
that?" And I'm like, "Well, you'd be surprised how impossible it is to
avoid fragrance, including people's hugs."
BLACK:
Yes. Right.
ADEWUMI:
Because we spray perfume all over our shirt––no one is thinking that
when they pull you into this deep hug. This is the aunties and stuff.
It's like, "Oh, no, I can't put my face up." Or when you purchase
things, if you go to boutiques and stores, people don't notice that
they've been sprayed down. Your shirt wasn't manufactured smelling like
lavender, right?
BLACK:
Right, absolutely.
ADEWUMI:
It's caused me pay a lot of attention to how other people have to
navigate the world differently, especially in gender. I wonder what a
fragrance allergy would be like as a non-woman-identifying person––what
would that even look like? I have no idea. Like the need to have hair in
general––thinking back, the solution could also be just don't have hair!
Or, who cares if you smell like lavender? Why is that something that you
feel insecure about, that you need to smell like whatever the Victoria's
Secret model is talking to you about?
BLACK:
You touched upon this idea of community and, on the other end of the
spectrum, the isolation of not knowing anyone else who is dealing with a
similar issue. How do your reactions to chemicals impact any
interpersonal relationships that you may have? You said that you have to
tell your aunties, "I may not be able to give you a hug, because you're
spritzed to the nine," as it were. But what is it like with
relationships, with your friends––I don't know if you have a significant
other––people outside of your immediate family who know that you have
this reaction to different chemicals, especially with fragrances?
ADEWUMI:
I would say that as an adult, if I don't want you to know, you don't
need to know, especially because it has decreased as I've aged. And also
as I've aged, there's how popular the Internet has become, and how
certain natural products have since become more popular. Now, as an
adult, this has been much easier. It's also part of the trendy culture
thing, where I mix my own lotion, but I know a few people that do also
mix their own lotions. No one knows I don't have much choice of a
lotion. I don't know what it would be like if I went out today and got
your generic fragranced product and put it on my face.
I will say it hasn't really affected my relationships with people in
adulthood. When I was younger, especially since my sister and I are
eighteen months apart, I spent so much time with her that she already
knew. Now, other than like, "That's a really cool thing, that's really
interesting dinner table conversation," being the girl that breaks out
in hives if I have anything to drink––a couple months ago, I had about
one (drink), and I will have hives in the morning. I can't really risk
putting chemically lotion on my face.
BLACK:
Right.
ADEWUMI:
It's also hard to parse out if it's particularly fragrance, or if it's
chemically produced fragrance. If I was rubbing essential oils on my
face, what that would do versus what other spritz perfumes would do--but
I also don't use perfume for that reason; I use essential oils. People
do notice that, and people are like, "That's kind of interesting, why
don't you use perfume?" And I usually go for, "Why would you put
anything on your face you can't eat?" But not, "You know when I was
younger, I used to get these things." So it hasn't really affected
anything.
BLACK:
I wanted to ask––since as I understand it, your reactions were mostly
bad when you were a child/a teenager––did you ever receive support or
any mental health counseling? Or do you feel like since it was so
normalized and your routine as you were growing up––not going to
different friends' houses for sleepovers? Did that have any mental toll
on you, and did you see any counseling for that, either formally or
maybe informally? Like, this was a conversation that you would have with
your sister, Teni frequently, and you would talk about it a lot, and
that was how you could vent about having to avoid these allergic
reactions?
ADEWUMI:
That's an interesting question. I would say I don't know the answer to
that. The reason that I would say I don't know the answer to that is
that the allergy was happening on top of life. It was happening on top
of life, but also included lots of other othering, and it was happening
around times I was made fun of for being so dark. It was happening
around times where I'm like, "I'm foreign, and I'm trying to understand
getting into this idea of Blackness in the United States." And being
made fun of and not understanding why people would call me certain names
like "Oreo." This was all happening to me in middle school and trying to
navigate boys and getting boys to like me and being the dark girl and
also being curvy. That's why I don't know––it was just another thing on
the list of not fitting into this image of what a girl was supposed to
be like. I think all of those things take a toll on your mental health
and are very isolating.
I had seen a child's counselor, but it was more for not having any
friends. I had a teacher that was like, "Hey, man, I think you don't
have enough friends, you should go talk with the counselor." We talked
about being foreign and feeling strange. In middle school, my parents
decided that I was going to go to the middle school across the city. I
would take the city bus, and I would be the first one in school––all of
these things exacerbating what it feels like to be a middle schooler. It
was just one other thing, like acne. I have a particular trigger.
I will also say that the no-sleepovers thing was less about the allergies
and more about being very, very immigrant-y.
BLACK:
Okay, okay.
ADEWUMI:
That was hard, but it was hard for different reasons. All my American
friends will be allowed to do this thing that I wasn't allowed to do,
right? And my parents were like, "We don't understand why you want to go
out to other people's houses." My dad was like, "I bought you a bed. I
paid for the bed. You're going to sleep in it." That was isolating on
its own. I wasn't like, "Oh man, I will have to navigate this thing,"
because I was like, "I just want to be like my friends, Dad!"
There were a lot of other things that more focused on intellectual
immigrant-y performance stuff. My hives was not a priority of mine.
BLACK:
Okay, fair, fair. It seems like you are where a lot of the interviews
that we've been having with other participants are, where they are doing
activism for their own illnesses. You seem to have directed your
attention to public health and the racial inequalities faced for
non-white women and specifically by Black women. Is this for
working-class Black women as well, dealing with all these issues of
access and awareness? Is this basically where you focus your energy and
activism?
ADEWUMI:
Interesting question. Until I started doing the pre-term birth work,
most of my work has been on women in sub-Saharan Africa, so it's been
access to care, barriers to care, not having enough providers––research
around barriers to care, experiences of oppression. It deepened into
Black women throughout the diaspora––access to care, intimate partner
violence. There's things that are interestingly overlapping across the
cultures, where the communal factor is race––or perceived race,
identified race. Particularly around control over your own body, and
ways in which being Black––not in America, but in the world––being Black
and woman has deeply (unclear) the need to control your body.
BLACK:
I'm also thinking of when the first time you even heard "multiple
chemical sensitivities" was? Previous to joining this project, I was
unfamiliar with the term, but I could probably tell you about five
people who I know who are in fact sensitive to chemicals, but it's just
not perceived as one of those well-known, diagnosed medical issues.
ADEWUMI:
Yeah, I know plenty of women who can't use certain things, and it's just
normal. My sister did get her PhD in environmental science. Her work was
particularly looking at Black hair care workers and the chemicals they
are exposed to. So I did get a little. She was doing that since her
masters, and I did some of the survey work for her. She did teach me a
lot of things. She worked for a nonprofit called Black Women for
Wellness and so at some point, I became surrounded by Black women who
were advocating for different ways in which (exposure to) chemicals, and
how you ingest them, the different ways in which they can impact your
body.
For some reason I ended up having a professor who was really into
endocrine disruptors in college. We got into this deep dive into the
different derivatives of endocrine disruptors and how they particularly
affect women of color. But no, I never actually heard the term multiple
chemical sensitivity. I just know that there's a lot, a lot, a lot of
chemicals out there that are really messing with people, in ways that we
don't think about reproductively, like thyroids or fingerprints. But I
never actually heard anyone call it multiple chemical
sensitivities––it's a mouthful.
BLACK:
That it is. So, this whole time, you've never seen a doctor for your
allergies. I guess you told me by this time you feel like you really got
it, how to manage it. But that's really wild.
00:54:08
ADEWUMI:
Yeah, only about the running, or the showering, or the heat stuff. If I
went to a sauna and my pores opened, then it would be awful. There's a
whole group of research around what is actually causing it, but I talked
to my doctor, and he realized that it's whatever makes contact with my
skin. So actually, I ended up having to switch detergent for a while to
hypoallergenic detergent. My workout clothes were being washed in
non-hypoallergenic detergent, and then I would go do hot yoga. I would
just start really, really itching to the point where I get hives, but
also had these horrible scratch marks all over my body because it would
spread as I got warmer. So I go take a shower, but the shower has to be
cold, because the hot shower would make it worse. Now I actually take
Benadryl to work out.
Which is also something that's fascinating––I don't actually tell people
because it feels weird and embarrassing to talk about. If I get invited
to hikes, I don't go because I know that at some point, I'll get sweaty
and really itchy. And then it'll be really embarrassing, especially with
groups of people––unless I really know the people, and I can stop and
scratch for a while.
BLACK:
Okay, wow. So you would say that your allergic reactions do in some
forms affect your social life, then?
ADEWUMI:
Yeah, in some capacity, because you have to pick between not doing
something or explaining stuff. There was a time where I met this guy,
and he was like, "Let's go on a date and hike this mountain." And I was
like, "Oh, he's kind of cute, sure, let's hike this mountain." But I
didn't know him enough––it was enough to hike the mountain with him, but
not enough to tell him.
At some point on this hike, I was horribly miserable, but I just couldn't
for some reason, socially––I was just embarrassed. I would subtly try to
scratch and grit my teeth, and just know that we were going down; we'd
hit the summit, and we were walking down. It was such a beautiful hike,
too. It was in South Africa, and I was so itchy that it took so much
away from that experience. Which is comical now.
BLACK:
We have less than four minutes until we hit the hour mark. Is there any
topic that I didn't touch upon that you think would be helpful, or
something that you want to expand more on, or something you want to
bring to the table?
ADEWUMI:
I think that there's something--for a lack of a better term that I think
is often used with public health--stigmatizing about being itchy. It is
weird to be the person scratching. You don't think about it until you're
the person scratching. Then you're hypersensitive, and there are times
where I find that I'm always trying to hide that I'm scratching. I'll go
behind somewhere to scratch. When I'm somewhere particularly warm, I
just start scratching. I don't know if I already mentioned it, but it is
very isolating to be allergic to things. Because my sister has only one
allergy. Growing up, I was the weird one who was always getting hives
and allergic to everything and that we had to make sure that whatever
was in my food wasn't going to make me burst out in hives. My sister
didn't have that until one day–– She's only allergic to Rite Aid cookies
and cream ice-cream, so whatever chemical they put in their
cookies-and-cream ice cream gave her hives.
BLACK:
Wow, okay, crazy.
ADEWUMI:
Yeah, and it's a very specific, very avoidable allergy to have. It is
very interesting, to have lived a life where you avoid something. I
understand my privilege and that my outcome is hard, right? Because
it's, I would say, at most inconvenient–– it's inconvenient to have a
visible reaction; it's inconvenient to scratch. Perhaps evolutionarily,
back in the day, cavemen would probably want to avoid the person
scratching all the time. So it is pretty embarrassing, but I also do
recognize the level of privilege in that it wasn't debilitating. It
wasn't something that could take my life, severely impact my life,
severely impact my ability to breathe. That was a point of privilege.
And so there was balancing knowing that, "Oh, it's not that bad." It's
not like people who were allergic to peanuts and bees and stuff, who
have severe reactions. It's just funny to be the embarrassed kid in the
corner, like, "You guys slow down, I can't sweat too much!"
But similarly to the other thing, it goes away the more I do it. So the
more I run and the more I exercise, the less itchy I get. That's a
strange point of privilege. Something I think about often is what I have
called the evolution of my allergy. They looked different at different
points in my life––they looked different in college; they looked
different in high school; they looked different in grad school. I'm
interested in how my aging process is contributing to my reactions.
BLACK:
Yeah, that is really fascinating. Do you have anyone else in your
family, immediate and otherwise, who has allergies? I know you said your
sister is allergic to Rite Aid cookies-and-cream ice cream?
ADEWUMI:
That's the one thing, and no, nobody else is. And it was really
particularly like I was the weird one because I don't have cousins that
have this. No one wears glasses. No one had braces. Nothing––no bodily
difference that stood out except for me and my rashing, which was
frustrating.
BLACK:
Yeah, I can understand that.
ADEWUMI:
And then other people knowing is like, "Oh, are you sure you want to
have that? Are you sure you want to have that again and get hives? Do we
want to make sure there's no lemon? Server, is there a lemon in there?"
Like, can I just drink a drink? Lemonade is a very popular drink. People
do not understand how popular a drink lemonade is until you are allergic
to lemons, especially in childhood.
BLACK:
Oh, yeah! That's for sure.
ADEWUMI:
I'm like, "Nope, don't want any lemonade today, thank you."
BLACK:
Alright. Well, thank you, Konyin.
ADEWUMI:
You are welcome. I know there were some strange allergies and not a lot
on typical chemical sensitivities.
BLACK:
It's a spectrum, you know what I mean? So if we want to try to get as
much of it as possible, to be able to say accurate things––you know? So
your interview was really very helpful, actually.
ADEWUMI:
Can I ask what other sensitivities that people have had?
BLACK:
People have had anything from issues with fragrances, issues with
run-of-the-mill chemical. Lead sensitivities––or grew up near smelters.
The (Environmental Protection Agency) EPA was regulating stuff like
that, and they just happened to live in a place that was not regulated
because of that. Or there was lead in the house because lead was in
paint for the longest time.
ADEWUMI:
Yeah, it was wild. They found out it was neurologically debilitating.
BLACK:
Right? Yeah. Exactly. And people who have electromagnetic sensitivities.
ADEWUMI:
Oh, that's so fascinating.
BLACK:
Yeah, right? It's been a pretty wide gambit of things. And usually, if
they're sensitive to one thing, they're also sensitive to a host of
other things.
ADEWUMI:
Actually, your last statement was very interesting––"if there's
something they are sensitive too, they are sensitive to other things." I
think that was very succinct (unclear). What I find in my interviews is
that when women find out just how common this is, and how people around
them––If you're allergic to one thing, you're allergic to a bunch of
other things––you can be allergic to multiple things. For the longest
time, I just thought that I was the weirdest person because it was just
me. And I couldn't tell if things that were happening to my body were
allergies, or were just normal child-adult things, growing up things. To
think that there are other people out there that have that and have
experienced that.
BLACK:
Yeah, there are.
ADEWUMI:
And you don't really know that when it's you, you know?
BLACK:
Yeah, because what I've seen is that most people haven't really heard of
what MCS is, and they don't find out until they're adults or mature
adults, and then manage to find a community on the Internet. Or they
just happen to run into somebody who also has this. From what I see,
it's a very it's a very isolating medical issue to deal with.
ADEWUMI:
Yeah. Okay, cool thank you.
BLACK:
I'm not entirely sure what the timeline is for transcriptions. I think
we might be a little bit behind, but I'm not sure, so I can have
Alexandra follow up with you afterwards. I'm pretty sure that the
process is that you will get a look at the transcript, and if there is
anything that you or we may have questions about in regards to this
interview, we will contact you. It's most likely Alexandra, but if you
have any sort of other questions, I can have Alexandra contact you so
she can give you those answers.
ADEWUMI:
Thank you.
BLACK:
Well, I hope you can recover from the (Medical College Admission Test)
MCAT.
ADEWUMI:
Right? I'm still catching up on sleep. I want to thank you so much for
your patience. I'm sorry that it took me so long to talk to you. I was
deep in a hole.
BLACK:
Oh yeah, no. Oh boy, I get it! (End of July 31, 2019 interview)