Episodes
EP11 → Dr Akilah Cadet on Dismantling White Supremacy and Living Fully
TRANSCRIPT
[00:00:00] This is So, Life Wants You Dead, a show that explores the intersection of illness, disability, healing, and creativity. I had an emergency organ transplant in 2015 and despite the drama of the situation, it turned out that near death was fertile ground for my creative life. Now, all these years later, I can say that was what saved me.
That and a brand new liver. I'm Nora Logan, and this is a podcast on how looking at death helps you live. Today, my guest is Dr. Akilah Cadet. Dr. Cadet is the founder and CEO of Change Cadet, an organizational development consulting firm that offers services that support embedding belonging into overall company culture, identity, and strategy.
As a Forbes Next 1000 entrepreneur, her work is behind some of the biggest brands you use every day. Dismantling white [00:01:00] supremacy through storytelling is at the core of her work, as a leader, speaker, creative director, producer, writer, editor, and author of White Supremacy Is All Around. Notes from a black disabled woman in a white world.
She lives in Oakland, California Literally has all the degrees celebrates her disability is a proud Beyonce advocate and has an incredible shoe game. Welcome to So, Life Wants You Dead Akilah Thank you so much for being here today. Thank you for having me and for the listeners. My shoes today are Maison Margiela polka dot little kitten heels, and I love them.
Oh my gosh, amazing. I wish I could see them. You'll have to show me when we finish recording. I will, I will. , so just reading your intro and your bio and looking at everything you do is so unbelievably impressive. And, having had the [00:02:00] opportunity to read your book and become more intimate with your work in that way.
And knowing that you're also on a book tour and you're also a Black disabled woman, I'm wondering how you're doing today. I am miserable and happy, tired and excited, frustrated and fulfilled., obviously I'm carrying a lot of intersectionality. I do feel like right now that life wants me dead with the amount I'm doing.
The one thing that you didn't mention is that I'm still recovering from major surgery that I had, end of November. So I'm about two months out. And so I've had to literally train to go on my book tour. Like it's the Super Bowl. So it's been a lot, to do that and so that's why I share those feelings and emotions.
We have the highs and the lows that are coming along with it because I'm physically pushing myself. I'm mentally really pushing myself. Emotionally I'm pushing [00:03:00] myself. And there's just wonderful things that are happening and then there's some pretty fucked up things that are happening too because white supremacy is all around.
So thank you for asking. Yeah, I'm. I'm grateful that you're showing up as you are today. Thank you. I wanted to start with your road to diagnosis,
which you write about in your book. You live with several Mm-Hmm. rare genetic conditions, which were diagnosed over a span of time from 2017 to 2021. And you just mentioned the surgery that you recently had, and you talk about not only how difficult it is to live with these conditions, but also to be believed as a Black woman in the American healthcare system and how embedded white supremacy is in that system.
Can you tell us a bit about your story and what it also took for you to get diagnosed? Absolutely. So first of all, thank you for reading my book, [00:04:00] that is still pleasure. It's still, it's still a wild thing. Like I read your book already. Wow. I know we gave you an early copy, but it just came out this week.
So thank you for that. The road to diagnosis was long and short. And I say long and short because it took a while to figure things out, but it's shorter than most people's journeys to discovering rare conditions or rare genetic disease. So when it came to my Ehlers Danlos Syndrome diagnosis or EDS, which means my body doesn't, it has connective tissue issues, it doesn't, really know what to do with collagen.
So my joints like my fingers, my hypermobile feet and spine knees ankles wherever there's a joint or connective tissue or collagen, which is everything in your body It cannot work properly. And so initially my diagnosis started with weird heart [00:05:00] symptoms that I was having And I'm a vegetarian, I have no cardiovascular previous tissues, myself or with my family.
And it just really didn't make any sense. But, because I have three degrees and all in health, and I lived with this body for all of my life. I was able to push and find doctors who believed me. And because I found doctors who believed me from the very start, it made it a longer, shorter diagnosis span.
My primary care doctor knew right away something was wrong because she had been seeing me for years. And she connected me with a cardiologist who, is AAPI, so a fellow person of color, who was like, yeah, something's wrong, and I can't figure it out. But luckily he had a PhD from Stanford, in computer engineering, and also a physician.
So he found my connective tissue rewiring, wiring thing in my heart fascinating and wanted to solve it. So it took about a year ish to get diagnosed with coronary artery spasms, meaning my body thinks it's having a heart attack every day. So I live with the symptoms of a heart attack, [00:06:00] chest pain, shortness of breath, pain in my left arm, weakness in my left arm.
And that led to three years later being diagnosed with Ehlers Danlos Syndrome. So, with EDS, I found this scale, it's called the BITEN scale, and gave it to my primary doctor. And we did this, it's like different things you can do, such as, like, your pinky, your thumb isn't supposed to touch your wrist, and all this other stuff.
And that's how I was diagnosed. So in the book and still to this day, she'll say that I diagnosed myself with EDS and she just had to use her credentials, to make it valid. But it was because of my medical knowledge. It was because of my advocacy for myself and understanding my body where I was able to get to diagnosis sooner.
Now, everything I had, I was, in the words of Lady Gaga, born this way. I came out this way. But when I was younger, I was an athlete. So of course I would have knee surgery because I played [00:07:00] basketball or something was wrong with my ankle because I played basketball and I played tennis and I did all these things.
But it didn't make sense for me to be where I am now in New York City and just walk around for the day and then have a swollen, tender foot or ankle. And that was EDS and I didn't know it. And so when I was diagnosed, as I described in the book, it was like the Clueless moment when she realizes that she loves Josh.
You're like, Oh my God, my knee dislocated because of that. And then my thumb. And then the one time I just picked up something and I had micro fractures because of, you know, and it all came together. And so the thing about this long, short diagnosis is that it's exciting to know that you have something so you don't feel crazy.
And I don't use that term lightly, but that's how you feel within the system. And particularly with my intersectionality, but then it's also a form of sadness because you're like, Oh, I'm never going to heal. I'm now in this disabled body and I have to learn how to live with it. Yeah. And you talk about the grief of that and not being able to go back.
And I loved that as a. fellow [00:08:00] Clueless fan, I love that moment in the book where you bring that. It's like, cause I can bring it so quickly to the mind, that exact scene. I'm sure so many people can. But there's, there's grief in knowing that even though the information is power and it's so useful to have not only a diagnosis and have access to care and, you know, I think your, your doctor's name is Dr.
Watts. Is that right? Dr. Watt. Yeah. Which is great because I I call him bae because he takes care of my heart. But Dr. Watt, like the electrical currents, like in my heart, it's just great. Yeah. That's so good. I love that. But despite having care and something I really identify with, the grief of understanding that you're in a disabled body and you can't go back.
What has that been like for you, that sort of unraveling? I have progressive disability. [00:09:00] So, with Ehlers Danlos Syndrome, there's 13 types of Ehlers Danlos. I have myopathic Ehlers Danlos Syndrome, and that is one in a million. Wow. Exactly. And so I'm already alone because when you have rare disease, rare conditions, the science and the research is, is limited already.
But it's super limited for me because of the type I have and even more limited because I'm a Black person. And most research is done on not only white people, but also white men. So the way it shows up and it presents in me is, is different and there's not a lot out there. So I have to do an extreme amount of patient advocacy.
So the reason why I talk about grief is since my type of EDS is progressive, today I'm the best I can be and I don't know what's going to happen tomorrow. So for example, last year, I was diagnosed with Neurocentral Bilateral High Frequency Hearing Loss, October 13th. A mouthful. I [00:10:00] know. And that's either due to Ehlers Danlos syndrome or my other rare condition, which is called Alport syndrome, where my blood supply is limited to my kidneys.
It just affects that. It also affects my vision and my hearing. Myopathic EDS also affects my hearing. So one of it, one of our both are leaning into it, but with Alport syndrome, I may have kidney failure. I may have to get kidney transplants. I may lose some of my vision, and so again, today is the day that it's this day and today is the day it could be the last time that I'm doing something a certain way, and that's sad.
That's incredibly sad. I do all that I can to get to have joy as much as possible and celebrate the little wins, but quite frankly, I allow myself to grieve. On one hand, since I was diagnosed late in life with something I was born with later in life, I was able to have my youth and my teens and twenties, even part of my thirties where I could be fearless.
But now, if I'm going on a tropical vacation, [00:11:00] I can no longer do things that I haven't done, which I would have probably liked to do. I'm a girly who's at the beach and looking at the water.
I can't be as adventurous because I know what that means for my body. But it also is as simple as I'm not sitting on that hard bar stool to have a date that's not going to happen. I need a soft bottom. I have a soft bottom myself, but I need something soft, to sit on.
And it's, and it's those things where you're just like, Oh man, it's just a lot of, I like to call it math that I have to do to process, which is exhausting to do.
Speaking of math, something I'm continuously impressed by is the ingenuity of the disabled community to create and operate really due to necessity. And you write about this exact thing in your book, about all the calculations you have to make in order to just live your life. And I wondered, actually, do you have the book to hand?
It's literally right behind me, but I'm going to [00:12:00] grab it. Okay. So I wondered if you would read us a passage about living with these constant calculations.
I think about my progressive disability all the time. Knowing today may be the last day I do something without modification or at all. A big part of living with EDS is the fear. Will something subluxate or dislocate while I'm walking or picking something up? Will I be able to wear the outfit I want to wear because I may have to also wear a brace.
I'm no longer able to do concerts without my cane because it is hard to know if a venue will have an elevator or accessible areas for me or steps without a banister. It's the fear of a new comorbidity resulting and a new doctor or ER doctor not believing me. With EDS, anything can go wrong at any moment in time.
I can break out in hives for no reason. I can have overwhelmingly large amounts of sadness because of the unknown that EDS brings. [00:13:00] It's the taxing calculation of whether I have enough energy to do something. Can I go to the dinner? Can I make it through the wedding? Even things that bring me joy, like dancing, I will pay for within hours.
I have to choose to not dance, or I have to plan for the pain. EDS life is hard and misunderstood. Thanks for that. Thank you for reading that. And as you, as you read it, thinking about something that you love, like dancing, which I'm a, it's interesting because so many times I have people on the show and I mean, who doesn't love dancing, but they talk about dancing being something that they love so much.
And, how it has to be planned for. And you also seem so committed. And like you said, a moment ago, the grief intermingled with the joy. So you still make space for it. And I'm curious about [00:14:00] how you make space for it. That is an excellent question. I make space for it because I, I'm looking to feel something that is not pain, even knowing that the pain is, is evident.
And so I like to do these things called twerk work breaks because I'm like, you know, there's so many, particularly like during the pandemic, I was all over the place. I'm in Tel Aviv. I'm in New York. All from my chair. And so I'd get up and do a little quick little twerking or dancing or something to move my body.
Just to liven myself and to up feel something else other than pain. I also do it by, and I had to work to do this, giving myself permission to do it. So for example, I had a, a wedding, my cousin's wedding and I went with my cane cause I wasn't doing well. But then, back that ass up came on. So I had to get in, [00:15:00] you know, and back that ass up.
Follow instructions. Yeah. Follow instructions. Follow instructions. I can, I'm a Virgo. I can do that. And so I have fun and I danced and then my uncle came up and it was like, "Why are you pretending to use that cane? You don't need the cane." It's like, actually I do, because I'm a falsarist, but I made a choice. And it's the other folks who will judge in that area, especially with something as dynamic disability like EDS, and then also just choice of what to do that makes those things really hard.
And so I would have fun. I mean, I don't anymore, but I would have feelings about that and I would limit my joy. If I have a cane and I'm fully a cane and nothing else can happen, but now I'm just like, I can put the cane down and I can walk around here, but when I go back out, maybe on the streets, I'll need the cane. And so now it's like, okay, I'm going to dance and other people can have their feelings and emotions and I may educate them or may not. Or I was being honored at an art exhibit and I went in there fine.
And then 20 minutes later, my spine's on fire. So I went back [00:16:00] and got my cane. I don't care what other people think I'm doing what's needed for me. And that's how I can tap into the joy through the pain. Because it's, it's a constant, so you've got to figure out how to, how to tap into it in any given day.
Yeah, but I live with visible and invisible disability. Mm hmm. So right now I'm disabled, no cane. With a cane, also disabled. It's always around and that's privilege in itself because there are people who live with disability who have just visible disability. You know, so with invisible disability, I'm able to get into spaces and places, but as a result of that, I get a different type of ableism.
Yeah. You know? Yeah. And it's this sort of subtle way that people expect you to talk about in the book actually being, and I so identified with this of pre boarding for a flight and having people look at you like there's nothing, what are you doing? There's nothing wrong with you.
Yeah, and that's because I fly first or business class. So they're like, it's just not your [00:17:00] turn.
I live with a lot of pain, obviously, but my pain is my back. It's lower back. So L three, L four, all the way down my coccyx. So I've been doing experimental injections for the past, almost three years. And so we're at a point where I'm going to do another round of experimental injections.
If that doesn't work, my pain doctor was saying we may have to do a, um, implantation device. So it's a nerve stimulator that's implanted in my spine to redirect the nerves to minimize my pain, just the signals. And I asked one question, what does that mean for TSA? And she said, well, you, you know, have to get pat down.
I said, I cannot do that. She's like, no, I think this would be a really good alternative for you if it doesn't work out. And I said, unfortunately, due to the systems and structures of white supremacy, I'm unable to do that. And because she's been with me for a couple of years, she said, I understand. And for those who don't get it, who are listening, I'm a Black disabled woman going through TSA.
My name is Arabic. I commonly [00:18:00] get pulled to the side or additional checks. I will have curly hair or braids. Both cannot be detected sometimes. I will have to wear a brace sometimes. And, I have arthritis in one foot and so sometimes I just have to wear a boot and you have to take your boot off.
So I already have so many barriers. I can't as the traveler that I am, the CEO of my company have that barrier. In addition to the fact that my cardiologist is like, the airport is the worst place for you to be, for my heart, because it's a stressful place.
Where's your gate? Where are you going? Are you gonna make it on time? Blah, blah, blah. There's so much to deal with. People don't know how to be people in airports. So it's already, I'm risking my life, you know, to fly and altitude. There's just so much I have to deal with. I can't do, I can't do any more.
So that's not an alternative for me. So for a white person, that makes sense. For a person who doesn't travel as much, that also would make sense. But I don't have that privilege. And so, [00:19:00] it's what I just read. It's this, these calculations, this math that I'm constantly doing, to see if it's worth it.
Which is exhausting. And it's something you, what do you mean? You talk about so much is how exhausting it is not only to exist within these systems and structures and on top of it to live with disability.
You talk about, also, you write about the first time you feared losing your life and, on this show, we like to talk about death, you know, um, and you use the very poetic, but also technical language of heart flutters.
Can you tell us a little bit of that story of facing into your own death? And also, what has it been like for you to become more familiar with it? Yeah. And so that particular hospital visit, I was having, chest pain. And because I live with the risk of a heart attack every day and the symptoms of a heart attack, I can actually have a heart attack at any moment in time and die.
So I deal with [00:20:00] death every day. I deal with grief every single day of my life. Sometimes it's more in the forefront, It's in the background, but it's always there. So when I have a spasm, which means the arteries in my heart close. So if you had a cramp in your calf, like a Charlie horse, whatever you wanna call it, that happens in my heart.
If those arteries don't open up, I have to take nitroglycerin. Nitroglycerin is a vasodilator, it opens everything up, all the arteries open up. I can only take two to three tabs. And once I get to that second tab and nothing happens, I take the third and
I have to email my doctor and tell him to send a note to the ER because of racism. Even though it's in my chart that I have all of this stuff, and that's the same ER I typically go to. Until that was happening, the nitroglycerin wasn't working, I went to the ER.
Early on, I would always bring a white friend. I would have a white friend meet me there so I could be validated, seen, and heard, so I had my white friend there and she was still breastfeeding her baby so she [00:21:00] had to leave to go pump, and come back. And so I have a private room, I'm sitting in my room, I'm on my phone, I'm on Instagram.
My heart rate is like in the 80s. Heart rate that is 100 or more when resting is tachycardia. Out of nowhere, I had a series of flutters and I went to 200 and some odd beats per minute. I could not breathe. It was the worst feeling I've experienced in my entire life. But because I'm a Black, disabled woman.
I have a shaky picture of what the monitor was saying while I was finding my breath to call someone to come in. The person who came in was a ambulance tech, EMT. And I was like, I need help. And they were like, I don't even remember how they identified, but all they said was like, I don't, I don't work here.
And I was like, I need help. Like, I'm trying to breathe. Like, I need help to get it out. So shortly after that, the ER doc who was assigned to me came in with a ultrasound to do an ultrasound of my heart. [00:22:00] And so, while all that's happening, because I was pre med, I go into doing pursed lipped breathing, which is essentially like you make a kiss sound, you breathe out to shorten your breath to try to control.
So I was doing that and then I got it down to like 170, 150 or something like that. And so, As she's doing the ultrasound, she's like, you must be just really scared because your friend left. And I was like, no, something is wrong. And she was just very belittling. And so while she's doing the ultrasound, I was like, well, let me reintroduce myself to you.
My name is Dr. Akilah Cadet. I have three degrees in health and I was formerly pre med. What happened is not okay. There's something wrong and you need to consult the on call cardiologist. And if you cannot do that, you need to call Dr. Watt, my cardiologist. Within minutes, it was determined that the endomethasin that I was on for pericarditis, which is the inflammation of the pericardium, the pericardium holds the heart in place and protects the heart, uh, caused subventricular [00:23:00] tachycardia, SVT.
And that means, like a, a heart rate that is so erratic where you can die. So that's the first time I almost died. And it was awful and it was scary. And after that, I really, really gave none of the fucks. And that's why I say and do whatever I want. I wear whatever I want, polka dot shoes today, right? And I live my life to the fullest because I can die at any moment in time.
Because, you know so life wants you dead, right? Yeah. And I found that becoming familiar and sort of even courting your own death and, and really, I have to admit, like, it's only because I nearly died and it sounds like it's a part of your, it is part of your experience too, that it helps me to live more fully.
And it gives me permission to just say, fuck it. Because what. What else am I going to do? Totally. People are like, how are you so unapologetic? I'm like, I have the cheat code. [00:24:00] I can die at any moment in time. I literally have nothing to lose. Nothing. Nothing at all. And um, I don't recommend it. Don't go get something that, a near death experience.
Don't do that. But, because that's the life that's been handed to me. That's how I take it. Now, at the same time, I do have a major depressive disorder because I've experienced a lot of harassment, discrimination in the workplace, but that's morphed into doing work that dismantles white supremacy, but living in chronic pain and knowing that when I do have to go to the emergency room, which I do at least once a year, sometimes more, sometimes less, I made it one year without going in a close to seven years.
Yeah, thank you. I celebrated. I bought myself some diamonds. But I have to have a doctor's note to go to the emergency room. My cardiologist knows that he's giving me an hour to get to the emergency room because I have trauma. And I just tell him like, I'll be there in an hour.
I once did an IG live [00:25:00] when I was supposed to go to the hospital. But it fit in the hour. It was just a 15 minute IG live. And I ended up like, okay, well I have to go to the hospital now. And it was for this clothing company. It's Hill House Home that has the Akilah Nap dress and they were debuting it that day.
And I'm in the emergency room and this time there was a black woman doctor who I, I dated her brother. So she knew me. And so I got the best treatment I've ever had in the emergency room. And while I'm waiting for my blood tests to come back and imaging to come back, I was like, Oh, I guess, I guess I can just do some product placement here of how the Akilah dress is off the shoulder.
So it's great for leads on your chest, and I just try to find the joy and these really, really incredibly traumatic spaces of having to fight to be seen. So that in case I was seen because of shared intersectionality. But most cases I have to have that doctor's note. I have to remind them of my colleague and that I am educated.
They have to look at the chart, you know, all of this stuff. And it's just really, really exhausting knowing that that's the place where I almost [00:26:00] died every single time. You know, having to reface it every time, every time. Yeah. Yeah. And it's such a, an incredible, safeguard that you put in place for yourself that your doctor knows that it's going to take you a minute to get there.
It's going to take you at least an hour to get there. Because trauma often, we have to move slowly in order to keep going so that you know that for yourself that you, you're like, okay, I just have to move slowly and I'm going to take my time and I'm in the meantime, maybe going to do an IG live. Yeah. I mean, because I still the unfortunate thing is I have to pay for all of this.
Like I have great insurance, I'm a platinum level insurance person for U. S. levels of insurance and, and I have to, but it's expensive to fly first class, but that's better for my body. I can't, I can't be in a regular chair. It's expensive to stay in this hotel that I'm staying at because I need a [00:27:00] bathtub.
If I'm anywhere, I'm here for, almost like 10 days in New York. I need a bathtub because that's how my body can go out and do the four events that I have to do this week on top of the in person meetings, all this other stuff. That's more money. So yes, I'm going to do content creation when I'm in the hospital because I have to pay for all this shit.
Mm hmm. Because healthcare is, like, insurance here is awful. Mm hmm. The surgery I just had was 159, 000. Wow. You know, for the insurance. My, I only had to pay 3, 000 of it because of insurance, but that's still 3, 000 outside of the person who just gets their annual physical or their pap and that's it. Yeah, all my doctors are specialists, you know, not to mention everything that is outside the mainstream medical, uh, oh, acupuncture massage.
Oh, yeah. Physical therapy. Sometimes it's covered. It's not covered. If you want a certain specialist, it's even. Yeah. Yeah, it's very expensive [00:28:00] to be disabled when you have the privilege to be able to take care of yourself and have access to these other things. And then you think about the millions of people who are disabled who don't have that option.
Um, and how, I mean, the dream for me would be more of an integrated system of these alternative therapies with the mainstream medical model, but we're very far from that right now. We are, but also for people who are on disability or any type of like public health insurance along with being on disability.
That perpetuates further oppression because you can only have so much money. So if I, you can get in home care, you can get additional stuff, but you have to literally be poor. Yeah, to do it. So that means I couldn't own my home. I couldn't own my business. I couldn't pay my employees I couldn't get my salary like all of these things So it's either you live in poverty or you have to [00:29:00] hustle really really hard Which is not good for the body to make a whole bunch of money or have a job That whatever state you're in, you know get paid in a nine to five space But they're now saying you have to come back into work Even though we've proven we can have a hybrid or virtual work environment You know have to come back to work which could be hard for your body. And it's just, it's really not fair.
And if we had more of an integrated system and we really understood that, one, disabled people are people. Things could be better for us. And it wouldn't have to be that you or I are acts of resistance for having a podcast, going to work, running a company, writing a book, like all of that is just fascinating and it's like it shouldn't, it shouldn't be fascinating.
Right. And disabled people shouldn't be having to operate in these really ingenious ways to just try to cobble together an existence. If only it could be more easeful. Yeah. So, well, speaking of being sort of, resourceful, which you clearly are [00:30:00] you're extremely high achieving, you run a company. You've also had your own podcast. You now have this book that's just come out. And I'm curious to know how you manage rest, which you kind of just touched on with having a bath in your hotel room and that sort of thing and how you manage to do so much. I'm really actually more interested in how you manage to do so much selfishly because I'm always curious as a disabled person myself how disabled people manage to get so creative about how they spend their time when rest is so necessary?
That's a excellent question. I am not resting well. I have not been resting well for, for a while, particularly coming out of major surgery, being in the hospital for so long ruins your sleep cycle. And I have been personally spinning and spiraling as the Virgo that I am around this [00:31:00] book and what this means to the world, because if this book does really well, it means.
More death threats. It means more transference from people who feel seen for my book. It means that I'm like absorbing more. If it doesn't do well, it means I have to figure out how to keep my business going in, um, a reactive country. So I'm not a diversity firm. Diversity is one of the things that I do, but I'm a black disabled woman.
So thus, therefore, they think, even though I have a doctorate in leadership and organizational behavior, that I only do DEI things. And that's not the case. And we have clients where we don't do DEI things with, but that greatly impacts money. So it's easier for me to rest when I have a whole bunch of money in my bank account, because it means when I do take the two months off of work, I'm still gonna get paid.
It means my employees will get paid. I also spin about that. But it also means that it's not a big deal for [00:32:00] me to go get multiple massages in a month and up my acupuncture, all these things that are cash, out of pocket types of things. And I feel that I won't really rest until I have a million dollars in my savings account.
So no matter what happens in addition to investments, I can be able to take care of me. I also feel I won't be able to rest because I was an escrow when I closed on my home, and my home is multi level. And, uh, when I was diagnosed with EDS, which I thought was a temporary injury, knowing that it was going to be long term, the home is not designed for me.
So my kitchen's all the way on the top, so I have to take the groceries all the way up. And I'm not supposed to lift a whole bunch of, you know, I didn't know. I had no idea. Yeah. I knew I had my heart thing, and I pace myself, but I didn't know about all this other stuff that was coming into it. And so right now I'm doing all that I can to push myself to get to a level where I can save for a single story home in the Bay Area in Oakland, California, which is incredibly expensive to do, but that's [00:33:00] what I need so I can have as much independence as possible.
And so that's why I don't rest. I keep pushing so I can be financially in a position where I can take better care of myself. And I hear what I'm saying because people like you just rest and do less now My company we work monday through thursday monday we only have internal meetings so I can wear my pjs.
We'll do external meetings But even so all my clients know that i'm disabled So if I show up in a robe, it's not a big deal because they value what's in here They value what I have to say, my thoughts and emotions and feelings in my head they know and are accepting of my disability. And I do talk about this in the book, I would love to have a kid one day. Yeah. But having a kid means I have to have a nanny and a night nurse because I won't be able to do it all because I'll need to rest. And I won't be able to maybe always carry something or for the baby because of my body, I'm going to need help to do it.
If I'm not partnered. Even if I'm partnered, I'm still going to need help, to do it. And that is all money. I may not be able to carry the child. I mean, you know, like there's all of these things [00:34:00] that go into it and it's centered around money because white supremacy is all around and we're in a very capitalist country.
And even in reading your book everything you go into each story you go into, it's all there. That, that idea of needing to hustle, needing to keep going because you're so committed to the work you do, but also really just to take care of yourself. Yeah. I mean, again, the book does well.
My speaking rate goes up. The speaking rate goes up. Theoretically over time I can do less talks for more money, less travel, less showing up, less energy. But again, as I mentioned earlier, someone, uh, tagged me in a post yesterday saying I've never, I've never seen a black person talk about idiots. And now I feel seen.
Mm hmm. And so then I was like, Oh no, I, I wasn't, I didn't know I was going to be the EDS black person. Like, [00:35:00] you know, that's like, I don't mind doing that. I don't mind doing that, but I'm now holding more in this area of lack of rest because I'm able to help people be EDS, disability, visible, invisible disability. And now I'm also holding that space. And so it does, it's a sad drive. And I say it's sad because it's 2024 and there's someone seeing themselves for the first time. So I can't imagine how isolating that is.
And then I'm like driven more so more people see me, but I also know the more driven I am, the less rest I have. You mentioned pregnancy and I really appreciated you bringing that into the conversation in your book because I think a lot of times, at least I'll just speak from the I and my own experience that There have been people who just expected that I wouldn't want to be a mother or that pregnancy wouldn't be an option for me.
And I'm not [00:36:00] sure how I feel about pregnancy. You know, I'm not sure if I want to be a mother. It's a great response. Yeah. But, I want, I, I still like to have the option, for it to be on the table. And you talk about exactly this of how people have reacted to your desire to be a mother. Can you speak a little bit to that?
So, I started the process of figuring out how to have a kid by myself. I'm getting older, I'm already of advanced maternal age, I would be a geriatric pregnancy. All the sexy names. Love, love that word. Yeah. Geriatric pregnancy. So fun. Men are great. , And, so I had to do genetic testing for that.
That's actually how I found out that I have this bonus rare disease of Alport syndrome. And it was a whole thing. A nurse called me, asked if I was sitting down. And I was like, what, what is it? You have this thing. I was like, yeah, no, that tracks for me. Whatever. Okay. That's fine. I'll figure it out.
[00:37:00] But I had to be very clear with my fertility doctors. That if we're matching sperm to me and genetic testing, if my kid has EDS, which is genetic, that's not a problem for me. Because look at mommy, look at what mommy is doing, it's going to be fine. But there's a lot of ableism that comes in that process of fertility and planning.
Not to mention I'm on paperwork called a single mother by choice. Mm hmm. Which is like, why do you have to do, just, just, just, such an attack. Just single enough is enough, but yeah, it's like, by choice, like, no, why are you doing that to me? So there's that, but taking a step back, there's this idea that people with disabilities don't have sex.
People with disabilities don't want passion, lust, love. And that's not true. It may be done in the same way. It may be done in a modified way or a different way. Um, there may, there's so many different types of intimacy depending on how that body works in the equation. But we like to get [00:38:00] fucked. I like to say that I need to be dicked down and celebrated.
Because there's so much that comes from it. Yeah, there's endorphins. It's just like the feeling. And for me, I'm hyper mobile. So that's a plus for that lucky guy out there. But I also am able to feel something that is not pain and to feel pleasure and to kind of lighten the load on my already tense muscles that I have genetically, which is really powerful.
And so because society doesn't think people with disabilities, chronic pain or chronic illness have sex, there is no way in hell you're gonna get pregnant. Why would you want to get pregnant? Because why would you want to pass that on to your child? That's awful. So they don't realize that they're telling me that they think my life is awful if I pass something on to my kid.
So with pregnancy it's not possible until society views us and sees us in a way as sexual human beings as well. [00:39:00] Because they don't do that for the non disabled person. There's another type of, microaggression that happens, like, you just got married when you're having kids, you're a woman when you're having kids, you're gonna have kids, you know, like, that type of thing happens.
But for us, it's just like, disgust. Like, why would you do that? How would you do that? Like I told you, I know that I'm gonna need help. And I'm preparing for that, but I should still have the opportunity to have joy and intimacy of a loving partner. And I still should be able to have the joy and intimacy of carrying a child and being a mom.
Yeah, and it's the idea that your life somehow has less value and you wouldn't be able to be as good of a parent as a non disabled person because you have a disability actually makes no sense. And yet. There are so many Ideas in the culture that tell us differently. Yeah, but I think the thing that [00:40:00] to note that's also really important is that When there's no representation People can't see it Right, and there's stories out there, but it's like the hot guy falls in love with a girl who magically gets cancer, you know, or whatever like it's stuff like that That's like very romantic or has ableist vibes to it Because we don't have representation in media tv movie press of seeing individuals have sex who are disabled or intimacy or making out or whatever, that also has a profound impact on how society views us.
So that's why, it was really important for me to be on the cover because I am beautiful. The photo on the cover is so beautiful. So beautiful. Yeah. But it's like, I'm, you can, I'm fuckable. Look at, I, yes, I look, it's here. But guess what? You're also going to see the cane every once in a while because I'm also disabled.
I can be desirable. And so that's why I do a lot, I call it geriatric modeling because I'm 41. But that's why I do a lot of geriatric modeling because it's, being an [00:41:00] older person but being disabled. And being able to be someone who's desired. I love being desired. I think it's great. Yeah. I think it's great, but there needs to be more of that.
And I talk about it in the story when I, my doctor was like, no, you are disabled, moving away from a temporary disability or American Disability Act placard to a permanent one. I was like, okay, but I did sit in my car and cry because I knew how society would treat me.
And still to this day, when I park in my ADA spot, someone's looking at me up and down, and before just like earlier stories of me and my uncle at the wedding and all the other stuff, I would kind of like get all the cars slow or walk, you know, so they'd feel better. But then I was like, I don't need to do that.
Sometimes I do. Fold it. It's transferring. It's not, it's not my strength, but sometimes I would do it. I have done that too. I have to admit I have, I have done that too. It's just easier. It's easier. Yeah. And then you have this internal conflict as a result of that. But now it's like, no, I'm going to get out of this Audi and I'm going to hop up and I'm going to, you know, roll out and you can have all [00:42:00] the judgment you want.
And if you ask me something, I will happily inform you about invisible disability. And just, and I've done that. Oh, I'm so sorry. Yeah. My, um, I'm so sorry. You can't see my inflamed spine right now. Yeah. Do you want to, you want to have a look at it? You want to, you want to get my x rays? Yeah. You want to figure it out?
Yeah. I'm curious also about your background, your extensive background in the health field you mentioned that you studied pre med and you have a master's of public health. How has this shaped how you think about your own disability and also as someone who's an advocate and also clearly with the publication of your book, it's like you just said, it's going to widen.
I think it's been a gift. I've had roles as a health or hospital administrator. I've been a health educator. I've been a grant administrator. I've coordinated programs for the CDC, you know, [00:43:00] like I've done so much in health. But more importantly, I did a lot of work for the San Francisco Department of Public Health, which is known for having the first HIV AIDS ward in the country where people were treated like human beings, so I've always wanted to work there, in the San Francisco General Hospital, but I was part of changing that system from a provider of last resort to provider of choice due to the Affordable Care Act, ACA.
And so I know a lot about the patient experience. I know a lot about the workplace experience. I know the measurement. I know how money is tied to it. I know all the acronyms because I did it all. And so I've used that and often more than not, since I I have a lot of care through University of California, San Francisco.
Someone has gone through the hospital. Some people have even gone through trainings that I either led myself or had a consultant lead. And I've seen my work that's out there. I know all of my [00:44:00] patients rights. Every single thing. So, for example, the surgery that I recently had, I was discharged early.
I shouldn't have been discharged. And I was readmitted because the complication I knew was going to happen happened. And I was telling the chief resident, I have rare disease. You do not. So I know my body and I need certain things need to happen in order for me to be discharged. And that certain thing was having a bowel movement.
So, due to Ehlers Danlos Syndrome, my diaphragm essentially slipped on top of my blood supply to my gastrointestinal tract. I lost 30 pounds in six months because I couldn't really eat. I could only snack and have tiny things. And um, I had yet to have a bowel movement. At that point when I was discharged.
with no bowel movement. And that was determined as one of the things I needed to have happen prior to discharge. The chief resident disagreed with me, told me everything was in my head. I told him I'm the expert of my body, one in a million, blah, blah, blah. Didn't give a shit. I was like, well, you are going to be responsible for when I'm readmitted [00:45:00] because you're responsible for me for 30 days.
And sure enough, I was readmitted and the second half of my hospital stay was free because yeah. So anytime a procedure is done and you are discharged, by law, they have to set you up for success. Your pain has to be under control. Certain metrics or whatever procedure you had done has to be set up.
And in my case, I had to be able to eat, poop, and have my pain under control. If you're readmitted in those 30 days, that's the faults of the hospital and the hospital has to incur all of those charges, which I knew. Wow. That's amazing. Did you go back in playing one in a million? I know I should, I always think about that, but I, so the interesting thing is that my discharge paperwork said in 48 hours, if you don't have a bowel movement, you have to take laxatives.
I've been on laxatives the entire time I was there. And 72 hours, you need to call the hospital. It's called the surgical team. So I was already past that. And so when I was talking to the surgical team, [00:46:00] they were like, well, how are you discharged?
I was like, I should have been, I know I'm coming back, you know? And so they put me in a different hospital this time around and I had a women led non binary team. A complete difference. I got there in two seconds. I'm having imaging. I had impacted, impacted, colon. My colon was stretched so thin that it was almost inflamed.
And so it was a whole process. Took a couple of days to get everything out, and everyone was incredibly apologetic. It was a completely different experience, and the second hospital stay was fantastic. But because of my intersectionality of being a black disabled woman, I knew more than the doctor in that case, and he had to assert , his masculinity over me.
Mm hmm. To be right. And I knew it was right. And that is all because I was pre med, I worked in healthcare, I worked in clinics, I worked in hospitals, and I know how to advocate for myself. Now with that said, every time I'm in a hospital or receiving care and I have a challenge that comes up, I think about the people who aren't as privileged as me with the three degrees and experience that I have and [00:47:00] how they are suffering and how they're in pain. In particular, the surgery that I had in November. I was sitting there having surgery with pain medication, having pain managed I. V. after and I had to think about so many oppressed people, including Palestinians that don't even have that. I'm glad I'm knowledgeable about things, but at the same time, you just realize if I'm dealing with this and I have all the tricks and tools, I can pull it up quick.
I can figure it out, you know, and know what to do. It's just incredibly frustrating. So right now there's an active investigation by the hospital to see if they're going to invest further, which is prima facie to determine how he was discriminated by the harassment discrimination office. And I literally told that doctor who is assigned as the investigator to see if they're going to investigate.
I said, for your prima facie, you have to decide if I was discriminated because I was disabled. discriminated because I was a woman, or discriminated because I was a Black person, or more than [00:48:00] one. And I said, good luck. Because unfortunately, my intersectionality cancels all of those things out. Because if I was a white woman, and the doctor, it's a Black doctor, easily, discrimination, sexual harassment, whatever.
If I were, just a Black man, it would be a, discrimination. But I have multiple points of intersectionality. And so you have to have enough evidence to prove enough to determine a case. Wow. Yup, yup, yup. And so even, like, in the hospital, I constantly had to advocate for myself. Here I am on dilaudid, Percocet, Oxy.
Yeah, I remember those days. Yeah. And I'm just like, no, I don't take that. Why am I not getting this medication? Every shift I'm doing it. But if I had, if I had MS, I would have so many things that are around me to make sure it was comfortable, constantly educating people about EDS.
So even in the time where I'm supposed to convalesce and [00:49:00] recover, I didn't have that privilege. And even though you have all the tools and you know, to take a shaky photo of your heart monitor, you know, to continuously advocate for yourself, which in and of itself is extremely exhausting. You, you're not getting the care that you need.
No, and quite, quite frankly, the investigator was like, do you have a copy of a discharge paperwork? And this is how, you know, the systems instructors of healthcare, it's like, you work for UCSF. You can get it yourself of the discharge paperwork, right? But you wanted a copy of the signed paperwork because on the signed paperwork, I notated, I asked him to put in the chart, but I also notated that I was being discharged without a bowel movement. Do you know, with all the drugs in my system, I took a picture. I didn't remember I took a picture, but I was like, let me see what was happening that day.
And sure enough, I took two very clear pictures of that. So I had the wherewithal. With all this knowledge and experience, knowing that it would end up in this.
But, [00:50:00] in order to receive better care, I have to file complaints. Which takes away from my recovery because I have to file a complaint and deal with all this stuff. It's an energy suck. Energy suck. But again, white supremacy is all around, so. Yeah. All, all roads lead back to white supremacy is all around.
Yeah. And you mentioned oppressed people and Palestinians just now, and you've been a vocal advocate for Palestinian people during this time. And I'm wondering if you can talk a little bit about how what's happening to the Palestinian people in this moment is a disability issue because I think it's sometimes something that people don't fully understand.
Yeah, so, um the I want to note that listeners may have their own viewpoints of this, but what we are seeing is a genocide. That's what's happening There's a lot of evidence that's indicating that that's why it's being reviewed in different courts of law, right? So there's that. It [00:51:00] is a mass disabling event.
What is a mass disabling event? People are losing limbs, vision, hearing, or a combination of both. As a result, they are disabled for the rest of their lives, which means they need additional care. If there's no infrastructure to receive that care, more people will die as a result of their disability if they can't be taken care of.
It could be as simple as not being able to hear a car because you lost your hearing because of a bombardment and you can get hit by a car. There's so many things that can happen for it. So as we think about the, the future for Palestinians, there will be a culture of people who will need help, assistance, and modification, but also a generation who will potentially be more compassionate for people who live with disabilities because there's so many people who are disabled.
It's also important to note we have a lot of children that are becoming disabled as well. Yeah. And so that is, that is, um, for [00:52:00] me, my heart aches as a result of that because I do live with disability and I know how hard it is to do it here. And I have the infrastructure to be taken care of. There's no infrastructure over there, right, to be taken care of.
And, and that's the tough part. And just needing basic care, especially in this moment. Uh, so there's so few people, doctors, medical professionals who are even able to keep up with the, the volume of how many people are being disabled. Yeah, yeah, absolutely. But again, you know, because of how disability is viewed here in this country, it's not a big deal.
Because we're not valued, right, in this country. So it's just kind of like, oh, well, people aren't going to do the math and put two and two together to see the long term ramifications as a result of a mass disabling event. Yeah, until we, until we have a different, uh, conception of what disability is [00:53:00] and until, um, More and more voices like yourself, yourself continues to speak up and talk about it freely and like you.
Yes. Thank you. Yes. So I want to read a quote from your book in which you talk about celebration. You say, what is a celebration for you? Is it a birthday, anniversary, graduation, or promotion? What about getting out of bed, eating, taking a shower?
Those are celebrations for me. What I've learned being a black disabled woman in America who dismantles white supremacy is that the traditional celebrations won't get me through the year. I need to celebrate myself constantly. Changing my thinking allows me to tap into joy.
I celebrate making it through a workday, when someone does [00:54:00] something sweet, and even when I successfully navigate unexpected twists and turns. A Pacific cooler Capri Sun works wonderfully. So I'm curious, Akilah, how are you celebrating today? Oh, today I already had a cookie. Oh, I love a cookie. What kind of cookie?
Like a chocolate chip cookie. So I'm a Soho House member because Of the murder of George Floyd and so that's where I am currently right now. And I wanted to have my book launch party here because I love the house staff. And so I was having a meeting, um, right before I came back to, to talk to you and, done. Check paid. And one of the servers just brought over these warm cookies.
And that to me, the celebration is that he wanted me to have these cookies. And then I tried to tip him and he's like, you cannot tip me. You cannot do that. I just want you to have the cookies because he's just so excited about me. [00:55:00] Right. And the book. And so it was like a double celebration. But I will say joy has been harder to find, just as we started because Since I do believe in the liberation of oppressed people, it's been really hard to get press. It's been really hard to get sponsorship.
The title is scary for white folks who feel uncomfortable because they're not ready to be comfortable being uncomfortable. And that's intentional and design. I'm also being told by the publisher that nonfiction is going to be a challenge this year because it didn't do well last year.
And I'm not necessarily being set up for success. And so I'm sitting in this intersection of like, okay, I did what I was supposed to do, which is rest. and recover from this major, major surgery that I'm still, still recovering from. But I probably should have been the stereotypical strong black woman to set things up, my press and PR and really work on it so I can set myself up for success.
And I'm basically kind of screwed anyway. And so this is the least amount of joy that I've had in my life. Happy for the cookie, but I'm, it's pretty [00:56:00] dark right now. It's pretty dark. So I'm. Looking for the ways to kind of reignite my spark to doing this traumatic work in a healthy way And I hope this book is one way to do it It's just not starting the way that I would think it would start so if you have capacity buy my book download it.
Because the only way You We can have more mainstream representation of disabled people is to have books like this become successful that turn into other things so that I can carry the weight of other people who are going through what we're going through of our shared intersectionality in a healthier way.
Yeah. And I, I hear, I hear the, the weight and the heaviness that you're carrying and I want to really honor and just really commend you for continuing to show up with so much light despite the darkness that you're going through.
And I want to, I want to take us out today with three questions that I [00:57:00] always ask my guests. If you lived in a world that completely catered to your disability, what would that look like?
I've been in that world. It was at Chronicon, the conference for people with disabilities and chronic illness pain. And, every food allergy was thought of. There were quiet spaces, soft seats, spaces for people to go in. It was the only stage, I've been speaking for 15 years, it was the only stage going on seven years of my disability that had a ramp.
And I was using a cane at that time. And I've done presentations and they know I'm disabled. And I'm like, there's no step to get up on the stage. It's seeing, seeing other people who look like you, who are happy, who are not in the hospital or a waiting room. It means that when I walk down the street with a cane, someone wants to tell me I look great and not say like, what happened to you? And then I say, I'm disabled. And then they're confused. I want them to be like, Oh, okay. You know, um, [00:58:00] and not want it to be like, I hurt my car accident foot, whatever, you know, I want to not feel bad by saying like, which things were regular or normal, because that that's going into that whole problem of society.
So that's what it would look like. Beautiful. And what's one phrase or saying that you always come back to? Keep being amazing. Ah, I love that. I love that. And then finally, what's one thing you do to keep yourself creative each day? So I'm a Virgo, so I spiral and I think about things all the time.
And so I'm working on, doing more creative projects that also dismantle white supremacy, but I am. I am everything. So if I am producing a documentary or directing a documentary, if I'm modeling, if I'm, you know, thinking about other types of creative projects, that keeps me going. That keeps me going into doing this [00:59:00] work and being able to have the endurance and tenacity that's needed to, dismantle white supremacy.
When we dismantle white supremacy, that means me as a Black person can be seen, me as a woman can be seen, me as a disabled person can be seen, all through those systems and structures of oppression. That's a really powerful answer. Thank you. Thank you for being here with me today. Of course.
Dr. Akilah Cadet, thank you. Thank you, Nora. Congratulations on the publication of your book. Thank you. Yeah, I look forward to seeing everything that's to come. Same.
That was our show, So Life Wants You Dead. This episode was made with support from Awakening Healthcare. Encouraging and supporting providers and patients to reconnect with their souls. Many thanks to Stephanie MoDavis and Ruby Shah. Our [01:00:00] illustrations are by Ronaé Fagon. If you like what you hear, please subscribe, leave us a review, rate us on Apple Podcasts, Spotify, or wherever you listen.
You can find us on Instagram at @solifewantsyoudead, where you can follow along for updates about the show. Thanks so much and see you next time.