"There’s Never a Perfect Time to Say, 'I’m Blind'"
FEY: I think that scares me the most of anything, like telling somebody romantic or otherwise that I might be blind. There might be a day where I am using a cane, a guide dog that, like, I genuinely just can't see without a lot more intervention. I can't get around. Yeah, I don't know. I don't know how comfortable I am with that.
This is Death, Sex, and Money.
The show from WNYC about the things we think about a lot...
...and need to talk about more.
I'm Anna Sale.
FEY: There we go. [laughs].
AS: How are you?
FEY: Oh my gosh, I'm in a robe! I was not anticipating being on camera!
Last year, I FaceTimed with a listener named Fey—we quickly changed to audio-only.
She’s 27, Nigerian American, and at the time, she was living with her family in Maryland. We talked when my book, Let’s Talk About Hard Things, was first coming out…and we’d asked listeners about the hard conversations they were struggling to start.
Fey had emailed the show about what she called her “tricky sense of disability identity.” Fey has a form of retinal dystrophy, which is a degenerative eye disease, but it’s an invisible disability.
And, she said then, she’d been struggling with how—and when—to talk about it with people.
FEY: The hard conversation I keep attempting to figure out how to navigate would be related to my eyesight because I'm visually impaired. Um, and just looking at me, you wouldn't be able to know.
FEY: Um, so it's something that I have to kind of present or that it's noticed, but nobody really knows the words to use 'cause most people think of the spectrum as you see [laughs] with glasses or not, or you don't see and you're completely blind. For the longest time, it really didn't even have to happen—like a conversation never really had to happen, but as my eyesight has worsened over the years, I feel like the conversation presents itself more often than not.
AS: Would you describe to me, um, what's your eyesight like now?
FEY: Sure. Okay. [laughs] it's really hard to like explain it even though like I literally see out of these eyeballs every day.
AS: I know. I know. It's like, "What is the color green?" You know, it's like such a hard question.
FEY: Right? Oh my God. That is the best way to put it. Yes. What is the color green? Is what you just asked me, but um, let me see. So right now the easiest way I can put it is in my left eye. I can barely see anything in the sense that I can't like read text. I can really only see like shapes. Um, I'm pretty color blind, like, so I really only see in shapes of, you know, gray, um, in the past about like two years now, I got like a blind spot, if you will. So if I like try and like put something right where my blind spot is, like, if you let's say, hold a finger up right where my blind spot is, I literally don't know what it is, but I don't see black. The blind spot is like a blurry. [laughs] like configuration of something like my brain is trying to force an image that's not there.
There is no cure for Fey's disease and early research into stem cell treatment is years away from being widely available. Eventually, Fey will probably lose her sight completely.
Fey was first diagnosed with her condition when she was 12. As her sight gradually worsened, she's needed to use more assistive devices to get through her day, like a screen reader when she's using a computer or a voice assist on Netflix, which narrates what's going on on the screen. But she prefers to use these in private. She doesn't really talk about them with people outside her family.
FEY: When I'm describing my current eyesight, I play it down. So I'm like, "You know, I'm pretty blind." Obviously, I don't drive. Um, but everything else I can kind of pretty much get around, but yeah, I pretty much walk around with blurred vision and just kind of clumsily navigate the world. But that's as, that's as specific as I get really.
AS: Um, why do you think—this is a big question?
FEY: Um, sure.
AS: Why is it hard for you to talk about what's going on with your eyesight with people in your life?
FEY: I think it's that I feel like there's not enough, um, curiosity on the other end. Like... I think maybe because people think I would be uncomfortable to share, but where I'm uncomfortable is if I don't think you wanna know more, I wanna hear more or it makes you uncomfortable like having to take on the—what I perceive to be like a burden of comforting me, then I close off. But for me, I also don't know how to bring it up [laughs] 'cause I don't know if they wanna hear all of it! Does that make sense?
AS: Yeah, of course. Is there anyone in your life who when-when you noticed that your eyesight was getting worse—
AS: Um, that you could turn to and just say, I knew need to tell you what's going on with my eyesight?
FEY: Um, yeah, so I will say most of the time it's so gradual that I kind of don't notice, but there was a time I would say like a couple years ago where I felt like a shift. Like, it felt like, "Okay, I woke-- I slept last night and I woke up this morning. I feel like something really changed." Um, and when that happened, I told my family, um, I made an appointment. I told them because they're one of them was gonna have to give me a ride. So like, "Hey guys, this is what is going on." But all I said is I think it got worse, but I-I wasn't really forthcoming with how much it really was getting to me. Um, then it was, I would say, probably after the appointment, when that reality set in, definitely, was much more emotional outwardly.
And the two people that I shared that outward emotion with were my dad and my brother. Um, I've never cried to this day about it except one time. And that was in front of my dad. And since then, we really haven't like really broached it again because I just kind of picked myself back up and kept it moving. But my brother, I will say I have emotional emotive conversations about it with him regularly. One, because he is curious, like he asks, like, "Tell me how you're feeling." And he like gives me feedback That feels very genuine. Um, not like he was—not anything that's like trying to just make me feel better or soothe me, like, it just-it just feels so natural.
AS: Have you ever had a conversation about your eyesight where you can remember someone, uh, asking you questions beyond what you were comfortable talking about, that they were so curious that you actually realized you were beginning to feel uncomfortable going into detail?
FEY: Um, I would say maybe my mom is the one that comes to mind in the sense that... it's not that she's asking questions. It's that she's... making comments or assessments about what I should be seeing or feeling. It's a lot harder for her to get used to my eyesight change than I think anybody else in my family. Like if I like let's say draw something and I pick it up pretty easily. She's like, "There you go, you can see!" And I'm like, "No, I just happen to like touch right where it was. [laughs] I got lucky that time."
But at least with her family, they know the basic facts. When Fey is meeting someone new, she feels a different sort of frustration, especially when it comes to dating.
When we first spoke, Fey had just started seeing someone she liked and she said she wasn't sure how direct to be with him about her vision.
FEY: In talking to him it did come up. I was like, "It's gotten worse over the years, probably in the last few years or so." Um, and then there's a chance it'll get worse in the future, but I never say that definitively, but that's because I never have. I still-I still feel uncomfortable with that idea.
AS: Um, does it feel uncomfortable because it's uncomfortable to say that you might be blind just to think about—
AS: That reality for yourself, or is it about how they might react?
FEY: Um, probably both. I think, um, more so how they would react.
AS: I'm curious, um, if you ever get to the Netflix and chill stage of the relationship—
AS: Do, do you think you'll turn on voice assist?
FEY: Oh my gosh. Oh my gosh. I don't, I don't think so. [laughs] I'll be honest. I will miss things in the show and just annoy him and ask like, "Oh, what did- what happened there?" Like, "I missed that." I'd rather do that than turn on voice assist.
AS: It's... I hear you saying two things, I hear you saying—
AS: —um, I don't talk about my eyesight and what's going on because I find that people aren't curious when I do mention it.
AS: And then I also hear you saying, "I try to keep it a secret that I need help."
FEY: Yeah. Yeah, yeah. But I really, I really don't think I'm ashamed of it. Like, I don't think it's anything to be ashamed of. Otherwise, I-I probably wouldn't be talking to you. Like sending in that email, I think maybe that was me telling myself, "No, I'm not ashamed. It's fine. Like, this is, it is what it is. This is like my reality. This is the life I live." Um, I-I think it's that I'm always worried that not that they're gonna judge me and think any less of me, but they're gonna, like, I don't know what I'm so worried about! I genuinely don't! I-I don't know.
AS: Yeah. Um, maybe it's just that it's you're changing. You've changed and you're not sure how, when and how to explain it.
FEY: Yeah. Yeah. I think that's what—that, that definitely is a big part of it. It's like, I'm, I'm still myself trying to get used to my reality in, you know, the world I usually used to know it with my new eyesight.
AS: Does part of you just wanna see where it goes romantically before you fully disclose what's going on with your eyesight?
FEY: [laughs] Okay, yes. I think that's so accurate. It's probably because I wanna make sure that he's somebody that I'm even that into, or that is gonna be around like six months from now anyway, before opening up that can of worms, you know what I mean? Like even if I go super in-depth, this won't be the reason why he's uncomfortable or pulls back. I wanna know that I'm safe enough in our connection that I can share with him and, you know, we can move forward romantically from there. Does that make sense?
AS: It sounds like you're afraid if you tell him he'll reject you because of your eyesight.
FEY: Yeah, yeah, yeah. There's an element of fear of rejection for it. Like, uh, the thing is I'm very comfortable with rejection generally... like just in the sense that like, I think [laughs] like you, like, you know, I've, I definitely been a girl that has shot her shot. I'm not like I don't typically do it, but I've done it, you know, here and there. Rejection doesn't really like break me to my core right, but the idea that this would be something to reject me for would-would basically illuminate all the fears I have about it. Where it's like, personally, I'm not ashamed of it, or I don't think any less of myself because of it, but I'm worried that others would look at me differently because of it.
AS: So I just wanna make sure I'm clear about your, uh, the next time you see this guy, you went on a date with—
FEY: Yeah. Yeah.
AS: —uh, is your plan to try to have a conversation about this or to wait?
FEY: Um, I don't know. I don't think that I will actively be looking to, because I, like last time we went on a date I-I think I was looking for the in, like, "Where can I bring it up?" Like, "How do I say it now?" Um, this next time, I don't think so. I-I-- 'Cause now I feel like I don't think it's fair, but I feel like I want the ball to be in his court in bringing it up again. Like I won't, I won't be the one to try and make a conversation happen. I want him to be the one to-- I don't think it's fair though, right? [laughs] I love that I'm asking you, but like, I don't know. I actually don't know if it's fair for me to put that on him because how is he supposed to know that I wanna talk about it or I would be open to talking about it. Um...
AS: Yes, he probably doesn't know that.
FEY: Yeah, yeah. That's true. So he might not even know there's more to know or more to ask about it, right? I don't know. This is really the first time I'm engaging with somebody that I, there's like a mutual interest between us two. And that my eyesight is something that... I think needs to be on the table in order to feel secure and safe.
I checked back in with Fey about eight months after our first conversation, and she told me that there had been a lot of changes in her life...
FEY: The guy. He’s no more. [laughs] So that's a thing.
Fey also told me she’d started a new job, and had told them she sometimes required some accommodations, and she was preparing to move out of her parents' house... which we talk about, after the break.
FEY: Right now where I, I am at home, there's usually always somebody. But now there won't be like 24/7 somebody kind of always just being around, um, which will be fine! Like I'm actually okay with that. Like I think that was a huge part of moving. It's just wanting this challenge, but still having a little bit of a bridge.
Last week, we asked you to tell us if you’re currently thinking about estranging yourself from someone in your life, like a close family member or friend. And your stories are flooding our inbox.
LISTENER 1: Right now I'm at a place where the person I've been estranged from, my mother, is reaching out to reconnect. And estrangement was her idea...
LISTENER 2: And eventually, they all stopped talking to me. I would see Facebook photos of them having brunch or barbecue...
LISTENER 3: I am becoming estranged from one of my two brothers. All three of us are gay, so you would think that is the makings of a wonderful and fabulous sitcom, but we have very, very toxic relationships with one another.
Thank you so much for sending in your stories. And we know being estranged from biological family can be painful in its own particular way, but we also want to hear from you if you’re becoming estranged from any chosen family, like an online community or a political group that is no longer working for you. What made you start thinking differently, and how are you thinking about the process of leaving those relationships? Record a voice memo and send it to us at email@example.com
On the next episode, I go on a walk with author and researcher Britt Wray. Her new book is about how the climate crisis affects our mental health, from detachment to overwhelming dread. And we also talk about our own climate anxiety, and, specifically, how she grappled with the question of whether to have a baby.
Britt Wray: When boiling it all down, the decision not to have a child felt like a commitment to fear. And then on the flip side, deciding to have a child felt like a commitment to joy.
This is Death, Sex & Money from WNYC. I’m Anna Sale.
Fey told me that her flirtation with that guy she liked sort of just petered out, and then she ended it. She was left unsure about whether her disability had been a factor, or not.
But when we talked at the beginning of 2022, Fey said she’d been practicing being more open about her eyesight. She’d started a new job in market research, and been transparent about her disability with her new coworkers. And she told me she was planning to move out of her parents’ house and into an apartment with her brother.
FEY: Because of living on my own, I'm just not gonna have the safety net I'm accustomed to like, I'm gonna have to ask maybe like a stranger at the elevator. Um, like, "Hey, um, did I click the right button type of thing?" Whereas if I'm in an elevator with a family member, they would just say, "Oh, hey, you, you clicked the wrong button." If I was going into an elevator with a wheelchair, somebody might just naturally have instincts to see how they could help.
FEY: But if they're looking at me, they have no idea. I don't use a cane or anything like that. So not only are they not gonna have the instincts to ask. They're also-- when I do ask, they're gonna be confused. And a lot of times I don't wanna be like, "Well, I'm visually impaired." 'Cause that always 9 times out of 10 opens up a can of worms. Like if I-- like I've had like encounters at like the wax ladies, like, "Hey, I might need to hold your hand, get to the room. Like, hold the back of your wrist," and then while I'm in the middle of a wax session, I'm being asked, [laughs] like, you know, like, "How long have you had issues with your eyes?" You know what I mean?
AS: Like a- like a-a waxing, like a-
FEY: A bikini wax.
AS: A bikini wax. Oh Lord. You don't want to talk ever during those conversations, and you certainly don't want to talk when—
FEY: Ever! Ever! [laughter]
AS: Do you have anyone who you can talk about what that has been and like to go through, who can tell you how they figured out when and how to ask for help?
FEY: Um, no, not anyone in my immediate life. I can say I have like an influencer that I turn to that I'm like, "Oh, she fits my vibe," but then she doesn't in so many other ways. Her name's Molly Burke, she also had a degenerative eye disease, but at this point she's like way, um, further, along than I am. Um, something else that we diverge in is that like, I- I'm a Black woman [laughs] so like, um, I have that additional minority element compounded on top of like my disability and being a woman.
Um, and of course, like I don't expect her to necessarily be able to speak to that, but yeah, like for the most part, I'm able to look to her to be like put words to my-- to certain things I've never known how to explain to others. I'm like, "Oh wow she's explaining it for me." [laughs]
AS: I just found, um, I was looking at Molly Burke and I was like, is there a Nigerian American blind person who would be interesting for you to see how they talk about their life? And I found, um, I don't know very much about her. She-she performs under the name Lachi, L-A-C-H-I. Have you heard of her?
FEY: L-A-C-H-I, no. Yeah. I would love to look into her.
FEY: How did you just type in Nigerian American? [laughs]
AS: I did. Nigerian American blind to see what I can find. [laughs]
AS: Let's see.
FEY: Oh, okay.
AS: Okay. Here's a-- I'm just gonna quote from this- your web.com article. They ask her, "As a woman of African descent living in America, one who is also blind dealing with duality appears to be something that comes naturally to you, is that so?" And Lachi says, " Duality is a great term and it's actually the title to one of my songs that did really well."
FEY: Oh, amazing. Duality is the word that is the key. I definitely live with a bunch of dualities. Um, and so many respect.
AS: Do you wanna hear a little bit of that song? I just found the YouTube video-
AS: -for it. Let's listen to it together.
I'm lost in your duality
I'm like who are you anyway?
Are you true or you just acting for me
'Cause you consume the whole of me
In your duality
In your duality
AS: Okay. Now we have to go to the club and we have to ask for that song. [laughter]
FEY: I was gonna, I was gonna say! I am just saying that is so not what I was expecting.
In your duality
I am lost in your duality
Who are you, actually?
I am lost your duality
LACHI: Hi, what is up? Oh my gosh. I'm so excited to be here.
FEY: [laughs] Same here. This is great.
AS: So Fey. This is Lachi. Am I pronouncing that correctly, Lachi?
LACHI: Lachi like Versace, girl. Yep
AS: Oh, love it. [laughs]
LACHI: Still trying to get that brand endorsement, but it didn't catch on yet. Soooo...
FEY: Hello, hello. I don't have a designer that sounds like this. [laughter]
We got Lachi on a Zoom with Fey and me a few months after we'd found her on youtube...so they could talk together. Like Fey’s, Lachi's eye condition is degenerative, and she also grew up in a family where she couldn’t always talk openly about her disability.
Lachi is in her 30s now and is based in New York. She is an EDM singer and composer, and a disability advocate. For a time, she told Fey and me, she had a day job working for the U.S. Army Corps of Engineers, but music kept pulling at her.
LACHI: I just was sitting at the desk and I just did not belong there. And, you know, I was humming and singing like really loud at my desk apparently all the time till finally somebody stopped me and was like, "Girl, do you realize you're just literally belting at your desk?"
Eventually, she quit her job and landed a record deal with EMI, but that deal didn't last long.
LACHI: And so anyway, I had kind of was like a traumatic experience where I was like, "I'm never gonna talk about my blindness ever again". And I was like, "I wanna put the music first. I wanna put the music first and put the music first." And then, so I got really good at what I did and just made sure that I was getting clients based on the music, and eventually, I got to a point where I was being sought after and I was excited. I was talented. I was getting, um, compliments and I learned how to feel confident in myself, and eventually, I started to allow myself to unfold that self. And so that allowed me to start kind of talking to other, um, blind folks and saying, "Hey, I am blind, you know, I'm legally blind," and then I started performing at sort of blind inclusion and disability inclusion places here and there and then as that unfolded, I started noticing that I was the only Black person on these panels. So I started talking about my Blackness too, 'cause ain't nobody had heard it yet! So I am now sort of like this woman, blind, you know, singer that, that's Black, that runs around and makes sure everyone knows that I exist.
FEY: You mentioned that like, you know, there was a time where you're you were within yourself and you weren't really loud and proud, if you will, and like you were trying to find yourself. I wanna know how much of that you think is because you're African because I know being Black, yes that's the thing. Being a woman, of course, all of that is part of the pot, but how much do you think of it is your African, um—
LACHI: Ness, my Africanness. Yes. [laughs]. I mean, they-they do all overcross, right because you know, there's one thing to be African and then it's another thing to be an African woman.
FEY: Mm-hmm. Yeah.
LACHI: And so they do intermingling. Yes. I think it did play a part. So I came from a large family of seven. To African- to African that ain't really that large, um [laughs] but I was the sixth of seven. So I was very stay in your lane, seen not heard kind of thing and because I was born with a disability, I was always kind of dragged around by my mother. I'm not gonna say I was coddled, but I was expected to be—I was just very quiet. I was just very shy and it still stays there. Um, that fear of always wanting to be the best, but then at the same time, wanting to be humble.
LACHI: Like that, um, in the mix of that, um, it is something that's amplified being a woman, and amplified being Nigerian.
FEY: I mean, the reason I ask is because I think being Nigerian is a lot of the sauce for me in the sense that like, in terms of maybe not being so forthcoming and like sharing everything, like you're taught from a very young age, at least in my situation, like you just don't have to share everything.
LACHI: Yeah, yeah.
FEY: Like not everything is for everybody to know.
FEY: And they... included in that is my disability. It's like, I don't wanna speak for any other groups, I'll just speak for myself, but yeah, as a Nigerian, I feel like I-I have this sense of, be private, be... keep a little more close to your chest. Like I feel like we treat disability, especially as like this weird elephant in the room all the time. Even if it's somebody who is very, um, obviously disabled, I feel like we never just talk about it. Like it's a norm [chuckles] it's like always this weird aura around it.
FEY: Taboo. Yes, that's the word. So I feel like, especially when it's now invisible it's like, "Then why share it if you don't have to?" And I'm like, "Well, then that's just so anti- antithetical to like what usually would make someone feel comfortable because when everybody around you knows then you can be more of yourself and lets go and not feel like you're protecting a secret or something."
LACHI: Well, it goes, it goes a further step than that. It allows you to advocate for yourself. But one of the things that I use for my advantage is the fact that people think it's taboo, and different, and weird. At this point, if I go to a family reunion, everybody knows I'm, like, I just show up with the cane. I'm just like, "Yo, what?" Um, and so I feel that a lot of times just stepping into it and being loud and proud about it or at the very least using it, you know, as your handshake does actually, uh, take all of that pressure not only just off you, but off everybody else.
You know, a lot of people are afraid to approach it. A lot of people, they may see you standing by your phone and holding it two inches to your face and they're like, "Uh, what's that about?" But if they [chuckles], if they already know, then it-it's just a norm. They don't have to feel weird about it.
AS: There's one more area I wanna cover together if it's ok. And, um, Lachi, you tell me if, if you're not comfortable talking about this, but one thing Fey and I have talked about is romance, and dating, and... when to disclose when you're seeing someone new, and how to, and whether to. Um, how have you thought about that?
LACHI: So I'm in a-a pretty committed relationship, but I think the discussions, the discussions that I've had have been with, you know, know whether or not to disclose on a dating app. I think personally, that if you use, uh, uh, some sort of adaptive situation or something like that, I don't see a problem in disclosing it. Because at the end of the day if you, if you don't tell someone you're a wheelchair user and then they find out that you are, the fact that you're in a wheelchair may not be what turns them off, but the fact that you were not upfront about it, maybe what turns them off.
FEY: I mean I know and there's obviously- there's definitely having to navigate who's like, who might be interested because but I've really never been a proponent of dating apps, and I'm already, like, clumsy with like disclosure. And then it's also like the moment of, again, I can get by without someone really knowing.
LACHI: Yeah, yeah.
FEY: Especially if I meet them in person.
FEY: Like I could have a whole night with them, we were at this party like they have no idea, and then it's like, "Oh, like, so do you want to meet up for a date?" And then I'm like, "I don't drive," and then they’ll, that-that's how it usually comes up.
LACHI: So I-I believe that as your vision gets, um, as your, you know, vision transitions, you will be able to, um, express it better, but I think that you should start working on it now. Then a good, a good thing maybe that you could consider doing is letting them know early in the date as a side comment. So let's say you're at a date, maybe the two of you are whipping out menus. "Oh, I'm legally blind, so you know, I'm gonna go-go ahead and zoom in, girl."
LACHI: And so, um, you know, you could keep it light and it doesn't have to be this whole big thing, so that when it's like let's go on a second date. "Oh, I'll pick you up," as opposed to, "Oh shit, you can't drive? How you can't drive? Oh, you can't see, how you can't see?" Um, but it'll, it’ll help you be able to like dispel stuff right at the top. And quite frankly, if homeboy can't han-handle it, you'll be like, "Well, I’ll see how to get this check, please."
LACHI: But I think once you start sculpting how it's your narrative, um, it'll be less clumsy and you'll be less sort of afraid. But I think also it is, it is, it is really, really, um, important, and imperative honestly, that you honor those thoughts. Because, you know, I'll come in here and say, "No girl, who cares? Girl, just be yourself!" But really, at the end of the day, we're all gonna feel some type of way when stuff don't work no more and you, you're, you’re allowed to have those feelings. They're natural, they're real, you should honor them.
You are a confident person actually and you may, you may not know it, but you actually are. Because I-I-I speak to people that aren't confident about their situation as it pertains to losing their eyesight, and you're definitely on the confident side. So I would like-like to tell you that you are gonna be fine.
LACHI: Because you can adapt, you're already confident in yourself and as long as you just keep walking that path, you're gonna be fine. Like just-just point blank period, you're gonna be fine. [laughs]
FEY: That means a lot coming from you because I’m like, "This is a very confident Nigerian, Black, disabled woman and like that's what I wanna emulate," so, thank you. [chuckles]
LACHI: Takes one to know one out here, right? [laughter]
That was singer Lachi and our listener, Fey. Death, Sex & Money is a listener-supported production of WNYC Studios in New York. This episode was produced by Afi Yellow-Duke and Katie Bishop. The rest of our team includes Emily Botein, Zoe Azulay, and Andrew Dunn. Our intern is Gabriella Santana.
The Reverend John Delore and Steve Lewis wrote our theme music.
I'm on Instagram @annasalepics, P-I-C-S, and the show is @deathsexmoney on Twitter, Facebook, and Instagram. Thank you to Andrea Ardans in Corvallis, Oregon who is a sustaining member of Death, Sex & Money. Join Andrea and support what we do here by going to depthsexmoney.org/donate.
Fey wanted to know a little bit more about Lachi’s love life, including if her partner also has a disability. Lachi is with someone who's neurodivergent, but she told Fey to cast a wide net when it comes to dating.
LACHI: Date who you want to date. Date who you like, who-who-who makes your Jimmys wet.
FEY: Jimmys is Jimmy? [chuckles]
LACHI: Who [chuckles] yeah. Who makes you, who gives you that WAP!
LACHI: You know, date who— [laughter]
LACHI: —okay, go ahead. Y’all can edit that out.
AS: We’re keeping it. [laughter]
I’m Anna Sale and this is Death, Sex & Money from WNYC.
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