Episode 5: Infinite Lives
feat. Eman Rimawi
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Episode 5: Infinite Lives
Eman Rimawi smiles at the camera. She has curly hair and is wearing a shirt with a kitten print on it.
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Episode 5: "Infinite Lives" feat. Eman RimawiEman Rimawi is a Black, Native American and Palestinian woman who lives in NYC. Eman is currently the Access-A-Ride Campaign Coordinator and Organizer at the non profit organization, New York Lawyers for the Public Interest.
She does organizing around making Access A Ride better for their customers. She was diagnosed with an aggressive form of lupus at the age of 17. In the 12 years that she has had the condition, she has had a myriad of complications. But her strength and willpower shines through the episode. Listen in as we talk about her journey through 12 years of her condition, Blackness and pain, and the many lives of Chun-Li! Listen below or find transcripts after the episode player. |
POWER NOT PITY
A podcast for disabled people everywhere...
Welcome to POWER NOT PITY, where we explore the lives of disabled people everywhere. Through storytelling, commentary and analysis, the podcast aims to amplify the lived experiences and perspectives of disabled people.
We’ll delve into all sorts of topics from education to entertainment, even sex... and we'll break down race, gender and dismantle ableism. And then we'll ask: “What’s your disabled power?” |
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Episode Transcript
Welcome to Power Not Pity, a podcast all about the lives of disabled people of color. I’m your host, Bri M! In this show we talk about all types of stories, from ones about desire and humanity, to ones about humor and the nonsensical. I truly believe each episode is a step towards dismantling ableism. And of course, we ask each person, “what’s your disabled power?”
Now here’s an episode about Eman Rimawi, one of the strongest disabled people of color I have met on this podcast journey! She also has some of the best clapbacks I have ever heard!
Eman Rimawi is a Black, Native American and Palestinian woman who lives in NYC. She began writing poetry and prose early in life. Her natural creativity steered her towards becoming a spoken-word artist, educator, and youth organizer for dozens of non-profit organizations in New York City including FUREE, Casa Atabex Ache, The Jed Foundation. She went on to teach creative writing, community organizing, history, and political science workshops to youth in New York.
She’s focused on organizing around disability rights and staying true to her passion for community connectedness and proven strength. She started Amped Up, an organization that helps disabled people to be creative and live lives they love, through fashion, creativity and social gatherings. She is also putting out graphic novels and children's books where disabled people are the main characters, as well as facilitating workshops to support businesses who employ disabled people to better support and interact with their staff.
Eman is currently the Access-A-Ride Campaign Coordinator and Organizer at the non profit organization, New York Lawyers for the Public Interest. She does organizing around making Access A Ride better for their customers.
She was diagnosed with an aggressive form of lupus at the age of 17. In the 12 years that she has had the condition, she has had a myriad of complications.
E : I was diagnosed with a pretty aggressive form of lupus when I was 17. Apparently it is the only one of its kind and that’s aggressive in the US. For the first 12 years of my lupus, since I’m almost 34, the first 12 years of my lupus, I had 4 heart attacks, I had several strokes, I had a spleen infarction, my vision came in and out of my left eye, I suffered severe neuropathy where suddenly I was paralysed from the neck down with no explanation, and had to learn how to walk again, and basically use my body all over again.
Connected to my lupus, there is this very aggressive clotting disorder that doesn’t like me apparently and puts random clots throughout my body in ways that I can’t control and I have to take a very strong and expensive blood thinner and didn’t realize that I had to take this blood thinner after I tried all the cheaper ones. Apparently when I have crazy amounts of emotional stress, my lupus is like, “okay, I’m gonna make some shit happen and I don’t care!” And that’s exactly what happened. And I think it was like a series of events. I had a miscarriage when I was like 27, or 28, and it’s my educated guess that there was a clot from that and it traveled down into my foot and caused gangrene. I mean in the beginning my foot doctor thought that it was a blister.
B : This was really interesting to hear. I was reflecting on what Eman had to say here, and I have to say that this was all too familiar to me. I’m sure that Eman knows her own body, just like Serena Williams does, just like Erica Garner did. But what do they all have in common? An outright dismissal of their pain and their medical needs. Eman made an educated guess about her miscarriage, Serena had to fight to keep her life during her pregnancy, and Erica Garner died from a heart attack only months after having her child. In my mind, these three women all suffered from the prejudices that are inherent to the medical industrial complex. We expect to receive care from our doctors, right? We expect them to fix what is wrong with us, but what can we expect when they don’t consider our opinions as vital to our care process?
And then two months later, all my right toes were like, bright red and my foot hurt all the time. And if I didn’t have my leg brace, I wouldn’t have been able to walk. By the time I got back to the surgeons, they told me like, “Yeah you need to come into the hospital and we’re gonna keep you a long time while we try to fix this”.
But they couldn’t fix it because it’s not only that I have the lupus and the clotting disorder, I also have teeny tiny veins. They tried and tried. They put me on Heparin while I was in the hospital, so much so that my blood got too thin. And they were like “ok we need to stop”.
Here’s where things get graphic: If you are triggered by explicit descriptions of medical trauma, please skip forward a few minutes.
By my sixth surgery, they cut the below part on my right leg. And I thought, “ oh this isn’t so bad, I’ll be fine. I still have both my knees. Even though my knees had issues, I could put a brace on it, no big deal” , but then I was having complications, because with lupus you have a compromised immune system, and I was in the hospital so much that I caught MRSA and at the time there was no antibiotic to fix MRSA. They have it now but they didn’t back then, which is you know, sort of like the irony of the universe, and it was really painful and they went back in, cleared it out, and left it open. And that’s how I got the MRSA , they sent me home with what literally looked like a shark bite with my leg open. And I’m like “how is that safe?”
I was in and out for like a good month and a half, and when I was out, my knees started hurting really really badly. It was unimaginable pain so I went back. One night they said ‘we have to clean your wound, because they think there was an infection and later on they told me it was the MRSA. They cleaned out my leg, like my wound was literally open, no stitches. They were cleaning out my wound, and that was the worst pain I’ve ever felt in my life. My mom was there holding me while I screamed. It was like hot pokers going into my skin. They had me on the bare minimum of medication, and I’m like you guys are so great at pain medication, I love it!
B : So not only did she face being undermedicated, doctors were afraid to treat her altogether. This hurt a lot to hear, because I remember a time when I was overmedicated. I was basically given a high dose of horse tranquilizer. Can you believe that? It was like being in Trainspotting. I don’t know if you are familiar with that movie but it was like being in it. I was unable to move, I had to be carried around and I was unable to eat because I couldn’t lift my fork. Again, here’s another instance of a healthcare professional invalidating my opinions about my body.
A lot of the doctors were my age. And they couldn't deal with treating me like that, and a lot of them said they wanted to be taken off my case, which is so good for medical care! Look I’m not your friend, I might be funny, I might seem like you could get to know me, but you’re still my doctor. Be a god damn professional and get out of your feelings. Finally, I came back, they sent me home again after a week of that. I came back and they said: “ok we can’t fix that” so they gave me so many antibiotics that I got CBIF and if you don’t know what that is, it’s like you have zero bacteria in your stomach and your system, and you can’t eat anything because you’re stomach is completely messed up. All I could eat if I ate anything was bananas and white bread.
B : Oh no! That’s like two of the whitest things ever!
E : Yeah, yeah and it was the BRAT diet, and I'm allergic to apples, and I drank a lot of tea too, but it was like “wow this sucks”. Yeah and the doctor came in and said we can’t fix your muscle, we’re gonna have to take your knee. That’s when it really hit me like, I’m gonna lose my knee. I didn’t know what to do, how am I gonna live, like I didn’t know cause I was new to being an amputee. I remember sitting in the ICU with my mother and crying in her arms for a half an hour, I didn’t know what I could do with my life, and after that I was so drugged up, all the time. It’s not like a blur, it’s more like things were jumbled together. And then they took my knee. I was coming out of surgery thinking this is too short for me, I wasn’t happy.
The entire time my right foot was acting up and I lose my knee, my left foot has clots in it! It’s starting to turn red, then brown, then black. I’m just like, I’m taking this freaking medication, I was literally in and out of the hospital, out for one then back in for three. Like, I don’t understand what’s the problem? I really didn’t understand. And they were doing this bypass on my left leg and my veins are so shot, because I had been in and out of the hospital and they’re already so tiny, there wasn’t anything they could do and they tried to save that leg. I was like, first of all, this is painful. None of you guys have ever had to feel this before, but I can’t make you beg in the middle of the night if you have some horrible phantom pain. And that’s it “oh well”. I hope you guys don’t walk out and get hit by a car one day, cuz this shit is not fun for me, I know it’s not fun for you guys and I’m the one who has to deal with it.
B : Do you think they know Black people feel pain?
E : It’s one of those things like, If you’re a black or brown person, they’re like, Oh you know how to heal. Oh am i suddenly not a human person that bleeds red like you do?
They treat us like we’re inferior, but they expect us to be superior and more physically equipped to deal with whatever might happen, whatever physical pain or whatever. Yeah, I might have a high threshold for pain, but it’s not because I am physically designed to. That’s because I’ve had 18 years of experience dealing with this! (laughs) And you figure it out. You take a hot bath with epsom salts, you hang out with your friends and smoke a little weed, because that’s literally the only thing you can do. You make sure you have your pain meds, you figure out ways to not be in the pain, even though you are in pain.
Unfortunately, society has this whole thing, like now there’s an opioid epidemic, why? Because white folks are dying? This has been happening for forever! Now you care? Because more white folks are dying. I see what it is, we’re not actually important, I thought I was an American, my bad. I could go on and on about it because I have the background in non-profit stuff and community organizing. The entire system in this country was designed to make people of color fail. They set it up in a certain way so that if you come from a low income background, like I didn’t have any money growing up! When you’re a part of so many minority groups, it’s like that game where you take one step forward, then you take one step back. Like I’m way way in the back. And I’ve been in the back even before I arrived on this Earth, even before I became an amputee.
B: Time and time again, she faces discrimination, but Eman doesn’t take much from other people’s comments.
E : I’m trying my best to bring us all forward together. But when you have a system that’s obviously and clearly working against you so not that not only do you fail, but a whole group of you fail together? And you’re sick, or you’re homeless, or you’re poor, or you have doctors who don’t provide with the right care.
When you have people who are disabled and part of the struggle and various disenfranchised groups that you are a part of, suddenly you become an anomaly. People are like, Wait, you’re a part of all these things and you’re still here, you’re still alive? It’s like, What choice do I have? Am I going to sit in a corner and not live my life? Or am I gonna fight tooth and nail as I have been doing for the last 33 ½ years of my life. And keep doing it and make sure I bring everybody up up with me. I prefer the latter, I’m not a quitter. I’m not the type of person who gives up on anything. I feel like that’s clear because of my medical history, through doctors saying “Wow you’re still alive!” “Thank you for reminding me!” that I could be dead but I’m not. Thank God!
But it is a miracle that I’m still here, but it’s also about my willpower, cuz I know there are plenty of times where I wanted to give up, and you know what I was like, no I’m not going to give up, I’m going to keep on fighting and that’s like my whole thing with being an amputee is that like, it’s one thing when you’re below the knee, you still have your knees you can figure things out, but when you’re not, you have to figure out a whole new way to walk normal and natural. 2 years ago, I was still in a wheelchair, you don’t get your legs right away, and it’s not like you get it downloaded in your brain, and it’s all this extra work. And I already sweat a lot and it’s even more of a workout to walk around. But I do it, and I’m working to go from a walker to a crutch and hopefully to nothing. But it’s gonna take time, and even though 4 years is a long time, it’s also a short time in the amputee land, I guess.
Everybody goes at their own pace, and at the same time, I still have all my lupus stuff to deal with. I’m supposed to be like Spiderman and be able to climb up buildings and be able to run down the block already. No… even if I was completely healthy, aside from my being an amputee, it still takes work and time.
People just want you to hurry up and you know what, it’s like I’m kinda too busy saving the world. I know that was such a long winded answer, so yeah. I know that was a long-winded intro but yeah!
B: No it was great! What I’m trying to do with this podcast is to just show people what our lives are like, truthfully and honestly and candidly, you know. All I’m trying to do is highlight our community, just put our community on! We don’t get to hear stories like this because we live in an able-bodied world.
E : When I was first new, probably like 9 or 10 months of being an amputee, I was finally alone with my thoughts. That’s when my hardcore depression came in at the time. I was still stuck in this able-bodied mindset. What would my life look like? I can’t even think about where it’s gonna be a year or six months, let alone next month, and four years later, I’ve had to acclimate to things. I can do things that able bodied people can do, well almost anyway, and I’m ok with that. When people ask me, I like to think that there are no stupid questions, and then someone asks me a stupid question!
First of all stranger, why are you asking me all these personal things? Why is it your business to ask me about my sex life? To ask me if my legs come off? Or to ask me to send pictures of what my legs look like without my prosthetics? Will and I live up on the second floor, so I have to walk up 4 steps and I hop up the rest of the 20 steps of stairs. And when I was first hanging out with him, his downstairs neighbor would say things like, “Oh you’re going to heaven for being with her!” First of all, how do you know I’m not a bitch? How do you know whether or not I’m just some fling? You don’t know me from Adam. Why are you assuming he’s using me to get into heaven? Like C’mon, that’s such ignorant crap! And when people assume that Will and I’s relationship isn’t like everybody else’s relationship, that just shows how ignorant society is still about disability and just how they don’t even put two and two together but just because I lost my legs doesn't’ mean I lost my frickin’ vagina, and it doesn’t mean that I’ve lost my desire to be with someone else. Or that I’m worthy of being with someone else.
While I was in a wheelchair, the entire time I was dating and that was some of the worst experiences and parts of being an amputee since learning how to walk better. Some of the things these guys would say was just like “wow! You are an awesome human being! How are you so great and amazing? Oh you just wanna see what sex is like with an amputee? Oh ok I see how it is. You think I should be pitied? I actually gave up when I met Will. I was just like, You know what? Ima be a cool aunty. Like I’m ok with that, I love my nieces and nephews, my brother and sister and I are cool. And then I met him and I was just like, I guess it falls in your lap when you’re not looking anymore.
B : Let’s take a break!
Music from GodHolly’s “Power”:
(lyrics)
It’s the power,
can you feel it?
Just be yourself
The power in you,
Your shield’s what you been through and
your mind is a weapon
Put it to use,
Power,
Power,
Power
The power
Power,
Power.
Power
Power
Power.
B : And we’re back! This episode just keeps on getting better and better! Eman has more to say about stereotypes that able bodied people have about disabled people. Let’s listen in:
First of all, I am not a level of someone who you should be saying, Oh my life could be like hers so I need to be a good person. “ What? My life is awesome! And if you need me to make yourself feel better about your life, you have a problem. And I’m not the one to say, like, one woman in my sister’s building, she had four or five young kids with her, and a couple of them were hers. And I was waiting for the elevator downstairs and the kids were like, “oh yeah your legs are so cool! And I was like thank you, and the mother was like “Don’t be bad kids, because if you’re bad, that’ll happen to you.” And I was like, I just looked at my sister and I was like (sighs deeply), I didn’t wanna cuss her out cuz she was in front of her kids. And I was like, actually I’m a superhero! And I go around saving people, that’s what I do for a living.
Don’t look at it as a bad thing because I’m up and around. It’s amazes me that people have this misconception that number one, disabled people should be locked in an institution, and ignored. And two, that we don’t have active lives, where we have things to do and places to go and people to see. When I’m at a bar with friends, they’re always like, “Oh my gosh it’s so good to see you out!” What do you mean out? Where was I? I don’t have a life? I don’t want to get a drink? I don’t want to have dinner with folks? I’m 33, not 500 and regardless, I want to live my life and I’m gonna! I’m living it better than before I lost my legs. I felt like I had to lose my legs, mourn my legs, to let it go, in order to be birthed from this cocoon into a new butterfly. But some folks have a problem with this current butterfly, and i’m like why? Are you jealous cuz I have cool ass legs?
B : Some of the problems she faces like a lot of disabled people in New York City is with Access-A-Ride, A paratransit service that is run by the MTA. Think Lyft, but for disabled folks. It is notorious for being ignorant of the needs of disabled people. I have experienced my fair share of waiting hours on end to get to my destination. Unfortunately, it is all we have to get around the five boroughs, unless we want to take the train or the bus, which can be gravely unsafe and horribly inaccessible.
Eman’s work with New York Lawyers for the Public Interest is all about advocating for disabled people in town meetings with government officials. I went with her to just one town meeting, and it was appalling to see how little the MTA cares about disabled people, the ones who they were hired to serve.
E : Yeah, since the first time I had this job, it sort of changed around, not changed around my view of Access-A-Ride, but what it can be and what it should be. You know even before I started working at NYLPI, I already gonna do some town hall meetings. Either we do this together and I will tell you what I find. So luckily they hired me, and we’ve been doing it together. The only unfortunate thing is that Access-A-Ride knows exactly who I am and knows exactly what I’m doing, the service has not changed at all! Is my time not important because I have metal legs? Is my time not important because I use a walker? That just makes me feel like that they not only don’t respect our time, they think that we don’t have important things to do or important places to go.
Believe me, if I could take the bus and the train, I would take the goddamn bus or the train! Could you imagine if it’s not an accessible station and I have to climb up the stairs with my walker? Like how’s that gonna work? What happens with that? If you had more accessible train stations, I wouldn’t have to rely on Access-A-Ride, which is so unreliable!
If I can’t walk up and down steps in the station, if I can’t take my time, then no! If I could walk a block and a half, I would take the damn train! Everytime I try to walk in Manhattan, no one is paying attention to me. People have bumped into me and almost knocked me over. If my balance wasn’t as good and if I’m holding on to dear life from my walker, I would have fallen over!
B : I have to take Access-A-Ride practically every day, and I run into some of the same problems, you know, it makes me bitter about, cause I’m a native New Yorker too, and just to know that New York City doesn’t have our wants and our needs and our priorities in mind. I love New York, New York is in my heart, but sometimes it makes me feel like moving.
E : Yeah, unfortunately, the thing is as bad as it is, it’s better that other states. For example, Boston is starting to do things around accessibility and around having a paratransit service. But a lot of other states say “We don’t have the capacity to do that”. “Well, we don’t have that many disabled people”, well have you asked? There are lots of other states that say they have a running paratransit system, but I don’t believe that.
As a whole this country has not, like why did it take what happened in the nineteen eighties and the nineteen nineties to fix the way this country treats disabled people. Before, they were like we’re not gonna worry about accessibility to a building… Nah, yeah we’re just gonna lock you up in these nursing homes, and rehab places and they say that’s the best they can do. What do you mean that’s gonna be the best you can do?
Would you want to do that to your mother? Or your father, brother sister, or you? People don’t get it until they you make it personal.
B : And here is where I wish able-bodied people knew how personal the relationship between inaccessibility and necessity can get. Eman has had to deal with inappropriate conversations with Access-A-Ride drivers, men who follow her into public establishments, and people who ask her questions or make assumptions about her body.
E : 74% of riders according to our surveys have had inappropriate conversations with their drivers. In the beginning of this campaign, my coworkers were like “Oh we don’t have to talk about that” “Why? Because you don’t think disabled women and disabled men could be sexually harassed?
There was this Starbucks across the street, so I thought I would go get some coffee, charge my phone, and hang out for a minute. This guy was on the corner and he was asking details about my legs, and I don’t care, it’s whatever.
He proceeded to follow me down the block and into the Starbucks! Then, he was like, “Oh fancy meeting you here!”. I asked him “Did you follow me one block down the street?” He said, “Oh yeah I just wanted to see if I could take you out?”
“What you did was not ok!” Luckily there were a whole bunch of people in the Starbucks but this happens to me all the time and people think that it doesn’t because I have metal legs. That has nothing to do with that. If someone wants to be inappropriate with you, they will and it doesn’t matter where you are and where they’re at.
Some people come up to me and they try to touch me! And it’s like why are you touching me? Why do you think that just because I’m disabled you have a right to put your hands on me? You don’t know me! I constantly surprise people because they first of all, don’t think that I have a brain, and they’re just like “Oh my god, you’re so well informed!”. What did you think that was gonna go away when I lost my legs? So because I don’t have legs, I’m suddenly mentally incapacitated? When I was in a wheelchair, people would never talk to me, they would always talk to the person I was with.
But it just shows how this country is, this country doesn’t care about or give a crap about disabled folks. I feel like, if I don’t do it who will? I have a big mouth (laughs), I know a lot of things, I have a lot of followers on Facebook and Twitter, I want to use that. I want people to see that disability is not what people think it is. I feel like the movement is absolutely more important than the both of us, and I want to give it one hundred percent. And when you’re like a woman of color and you already deal with so much stuff, when you take a moment of self care, the world is like no!
But luckily this is a group of people who actually don’t want me to burn out, and want me to be ok, so that I can do the work. They recognize that me doing ok is part of the campaign. (laughs) I’m so amazed that they do that for me because they are awesome and amazing. This was like, such a stroke of luck that I even came across this job, and they saw the value in me and hired me.
B : I’m really glad that you have an ideal job situation for you but it makes me a little bit sad to hear that because it shouldn’t have to be a stroke of luck for you. It shouldn’t have to be something you are surprised about because the world should be able to adapt in the same ways that we do! The world should bend for us, not the other way around.
E : I think the world is so used to being able-bodied, some one else comes into the picture, they’re like “No, we can’t accommodate you.” It’s always an accommodation, it’s not like just the way it is. Am I not American enough? Am I not enough of a contributor in this society? Being broke and disabled in New York is not a good look. Like they’ve told me because I’m not mentally incapacitated I can’t receive services. What? I didn’t know that I also have to have a mental disability in order to receive services when you are already physically disabled. And it wasn’t for a lack of trying either, I applied to jobs all over the place and because I was sick for so many years, I had gaps in my resume. And they would be like, Why do you have so many gaps in your resume? And they’d be like, have you not seen my legs? My hands are misshapen because of my neuropathy that happened years ago. I was consistently sick for a number of years. Years ago, before I got my leg braces, I had a bunch of employers tell me “Well this isn’t working for us.” And I’m just like, I don’t know what to tell you, I can’t turn my lupus off! I can’t turn off my clotting disorder.
This country is like, instead of curing diseases, they give you a placebo to keep you just well enough but not one hundred percent, so you can stay on the drugs forever. Yeah, my ex has this theory that, you know maybe it’s a place thing, like maybe they put out certain chemicals in certain places which causes these autoimmune diseases to flare up. And I don’t want to think these folks are malicious at the same time, studies come out about chemical warfare they’ve been doing to people of color.
The majority of the women who I’ve met that have lupus has been Black women and Chinese women. Why is it such a high concentration? Once again, I don’t want to think that the government is this malicious but considering they’ve done this already, that’s a concerning thing. Oh wow, you guys are straight up evil, you don’t give a crap if you’re killing entire populations! I think they would probably assume that I was dead 10 years ago, but for whatever reason I’m not, some miracle kept me here, and they didn’t realize I’m harder to kill than they thought. Which is you know, sort of funny and ironic at the same time… (laughs)
B : …And beautiful. I really do believe that in sharing our stories, that’s part of how things will change.
E: Ninety percent of my friends are able bodied people who had no experience with anyone in a wheelchair, didn’t know any amputees, didn’t know anyone who was disabled of any kind. And they were just like “Wow, you changed around my whole view of this. You’re out here living your life, and you’re disabled. That’s so new to me” and I’m like well, shit, it’s new to me too!
Lupus is a whole other ball of wax. It was sort of an invisible disability for a number of years, so people automatically assumed that there was nothing wrong with me. Even before I was diagnosed, my mother thought I was joking. That I was making something up, that I didn’t want to do housework, that I wasn’t having chest pains. That I was just lying. Then when she figured it out, when I was in the hospital, she was so apologetic. Even now after all these years, she still wants to do everything for me.
I was 15 when I started to feel sick and I wasn’t diagnosed until I was 17. At the time, I was exercising a lot and doing a lot of track and suddenly I was feeling tired and really out of it, and then I couldn’t eat anything. I kept thinking, Am I developing an eating disorder?, but it wasn’t an eating disorder. It was just my body literally freaking out because suddenly my lupus was there and it was like, I’m just gonna poke at your heart, I’m gonna poke at your spleen and all your internal organs, your arteries, your everything else. I went from being a healthy, fit 150 lb. 5’ 8’’ woman to 108 pounds and looked like an alien. I looked sick. And I think that if I hadn’t went to the hospital when I did I would’ve died. They said I had a heart attack outside of the hospital, and then inside the hospital because they didn’t believe me when I told them I was having chest pains. When you have a heart attack, there’s like heart attack residue in your blood and so they told me, “There was a lot of heart attack residue in your blood, which leads us to believe you had a heart attack recently while you were in the hospital”. I was in the hospital for three weeks before they figured out.
As much as my lupus is responsible for all this, living healthy is really really important. Luckily, I don’t have any other drug issues or alcohol issues, every once in a while I’ll have a drink. I try to eat as many vegetables as I can. I still do my yoga, I try to meditate as much as I can and try to keep myself as zen as I can with my little potty mouth and I keep it moving.
B : I know it might be scary, but joining the disabled community can happen at any time and probably will join at the end of your life. After all the disability community is the largest minority in the US. But the community is so strong and vibrant and welcoming, you have no worries about whether or not you will be alone.
E : Some people might be like, well, oh you lost your legs, but I’m like, No I gained my life… What would you trade to have your life? Legs? Ok. Yeah, it sucks but it just sucks now. It’s just a matter of time. Maybe in another ten or fifteen years, prosthetics will be different. Maybe in another ten or fifteen years they’ll create a drug that turns around autoimmune disorders and cures lupus. Maybe in another ten or fifteen years, this country will start to treat disabled people like people.
My life isn’t over, I feel like I’m at a rebirth. And I’m a completely different person. I have cool prosthetic legs now, I miss my heels, but I have all of these new kittie shoes, and I love my kittie shoes and they’re awesome. If eventually as I go down the line and get better at walking, I’ll get on heels but I am totally fine with my kittie shoes!
B : (laughs)
E : I’m fine with that. And yeah, not every day is easy. If life was meant to be easy, we would not be living on this Earth dealing the things we’re dealing with. That’s just how it is and I am built to last, I’m tough. I can push myself, and I have a support system around me. I have a great relationship and a great job and I’m gonna keep on being great, and it’s as simple as that.
B : So what’s her advice for able bodied people who want to challenge ableism?
E : Have a conversation! Get to know somebody and don’t ask dumbass questions! Talk to them as you would talk to any of your other friends. Because you never know who you’re going to become friends with if you don’t talk to them and make a connection. As much as I love being an inspiration to people, I am really tired of being everybody’s token disabled Black, Palestinian friend. No! It’s not my job to be your token anything! Like, meet some people, do something!
If people wanna open their minds, shit, hit me up on Facebook! Just be aware if you ask a dumb question, I’m gonna give you a smartass answer!
B : (laughs)
E : But like, I know a bunch of people who are cool, amazing, wonderful, brilliant, beautiful, talented, intelligent people, who just happen to be disabled. Like, we’re people with disabilities, but we’re people first! I still go through all my lady things, once a month. Will and I still have an intimate relationship. Eventually, I’ma pop out some kids. Cuz my life is just like everybody else’s. It’s just so funny to me how people think you’re not going to live your life because suddenly you have a disability. I’m like, “I didn’t get that newsletter, maybe you got that newsletter that your life is over, but mine’s not.”
B : So of course I had to ask her: What’s your disabled power? I knew whatever it was, it was going to be epic!
E : I feel it has to be something connected to infinite lives. I’ve almost died, I don’t know, like 15 times and I still kept bouncing back. It’s almost like on Street Fighter, where you have like three lives, but suddenly you might get, like, an additional life. I feel like I have unlimited lives, that I’m really hard to kill. I’m like Chun-Li, I’m that gangsta! I’m like Chun-Li, I still have all these physical issues, but I’m still so hard to kill. (laughs)
B : (laughs) Ok, ok! It’s whatever you want it to be! That’s amazing.
E : I mean I would love to be like a shapeshifter, like a person who could turn into a cat? I would love that! I would so love that power!
Yes! Our lives are just as valuable and complicated and beautiful much like Eman’s story was. She had so many sound nuggets, I don’t know where to even begin! Of course towards the end of the interview, I couldn’t help but think of my own struggle while she discussed her issues with ableism. We have so much in common and I don’t think it’s a coincidence that we are both Black people.
If there’s one thing I took away from this episode, it’s that representation matters. Say it with me: Representation matters! Let’s do a thought experiment: Imagine a world where disabled people (especially those of color) authentically show up in movies, tv, and books. What if disability justice was taught in our schools? What a world that would be.
If you want to hear more from Eman, her handle on Facebook is eman dot rimawi and her on Twitter is Eman underscore Rimawi.
Wanna know more about Power Not Pity or listen to past episodes? Take a look at my website! That’s www dot powernotpity dot com. Check out my Facebook Page at the handle powernotpity. My twitter and instagram accounts have the same handle too.
Shout out goes to GodHolly (that’s G-o-d-H-o-l-l-y) for the music! The song you heard throughout the episode is called “Power” and is actually featured on the CW tv show “Black Lightning”. It’s a really good show about a Black family of superheroes! It’s right up my alley!
If you like what you heard and would like to keep the show going, please consider checking out my Patreon page! That’s patreon dot com slash powernotpity. I hope you appreciated this episode as much as I did!
Welcome to Power Not Pity, a podcast all about the lives of disabled people of color. I’m your host, Bri M! In this show we talk about all types of stories, from ones about desire and humanity, to ones about humor and the nonsensical. I truly believe each episode is a step towards dismantling ableism. And of course, we ask each person, “what’s your disabled power?”
Now here’s an episode about Eman Rimawi, one of the strongest disabled people of color I have met on this podcast journey! She also has some of the best clapbacks I have ever heard!
Eman Rimawi is a Black, Native American and Palestinian woman who lives in NYC. She began writing poetry and prose early in life. Her natural creativity steered her towards becoming a spoken-word artist, educator, and youth organizer for dozens of non-profit organizations in New York City including FUREE, Casa Atabex Ache, The Jed Foundation. She went on to teach creative writing, community organizing, history, and political science workshops to youth in New York.
She’s focused on organizing around disability rights and staying true to her passion for community connectedness and proven strength. She started Amped Up, an organization that helps disabled people to be creative and live lives they love, through fashion, creativity and social gatherings. She is also putting out graphic novels and children's books where disabled people are the main characters, as well as facilitating workshops to support businesses who employ disabled people to better support and interact with their staff.
Eman is currently the Access-A-Ride Campaign Coordinator and Organizer at the non profit organization, New York Lawyers for the Public Interest. She does organizing around making Access A Ride better for their customers.
She was diagnosed with an aggressive form of lupus at the age of 17. In the 12 years that she has had the condition, she has had a myriad of complications.
E : I was diagnosed with a pretty aggressive form of lupus when I was 17. Apparently it is the only one of its kind and that’s aggressive in the US. For the first 12 years of my lupus, since I’m almost 34, the first 12 years of my lupus, I had 4 heart attacks, I had several strokes, I had a spleen infarction, my vision came in and out of my left eye, I suffered severe neuropathy where suddenly I was paralysed from the neck down with no explanation, and had to learn how to walk again, and basically use my body all over again.
Connected to my lupus, there is this very aggressive clotting disorder that doesn’t like me apparently and puts random clots throughout my body in ways that I can’t control and I have to take a very strong and expensive blood thinner and didn’t realize that I had to take this blood thinner after I tried all the cheaper ones. Apparently when I have crazy amounts of emotional stress, my lupus is like, “okay, I’m gonna make some shit happen and I don’t care!” And that’s exactly what happened. And I think it was like a series of events. I had a miscarriage when I was like 27, or 28, and it’s my educated guess that there was a clot from that and it traveled down into my foot and caused gangrene. I mean in the beginning my foot doctor thought that it was a blister.
B : This was really interesting to hear. I was reflecting on what Eman had to say here, and I have to say that this was all too familiar to me. I’m sure that Eman knows her own body, just like Serena Williams does, just like Erica Garner did. But what do they all have in common? An outright dismissal of their pain and their medical needs. Eman made an educated guess about her miscarriage, Serena had to fight to keep her life during her pregnancy, and Erica Garner died from a heart attack only months after having her child. In my mind, these three women all suffered from the prejudices that are inherent to the medical industrial complex. We expect to receive care from our doctors, right? We expect them to fix what is wrong with us, but what can we expect when they don’t consider our opinions as vital to our care process?
And then two months later, all my right toes were like, bright red and my foot hurt all the time. And if I didn’t have my leg brace, I wouldn’t have been able to walk. By the time I got back to the surgeons, they told me like, “Yeah you need to come into the hospital and we’re gonna keep you a long time while we try to fix this”.
But they couldn’t fix it because it’s not only that I have the lupus and the clotting disorder, I also have teeny tiny veins. They tried and tried. They put me on Heparin while I was in the hospital, so much so that my blood got too thin. And they were like “ok we need to stop”.
Here’s where things get graphic: If you are triggered by explicit descriptions of medical trauma, please skip forward a few minutes.
By my sixth surgery, they cut the below part on my right leg. And I thought, “ oh this isn’t so bad, I’ll be fine. I still have both my knees. Even though my knees had issues, I could put a brace on it, no big deal” , but then I was having complications, because with lupus you have a compromised immune system, and I was in the hospital so much that I caught MRSA and at the time there was no antibiotic to fix MRSA. They have it now but they didn’t back then, which is you know, sort of like the irony of the universe, and it was really painful and they went back in, cleared it out, and left it open. And that’s how I got the MRSA , they sent me home with what literally looked like a shark bite with my leg open. And I’m like “how is that safe?”
I was in and out for like a good month and a half, and when I was out, my knees started hurting really really badly. It was unimaginable pain so I went back. One night they said ‘we have to clean your wound, because they think there was an infection and later on they told me it was the MRSA. They cleaned out my leg, like my wound was literally open, no stitches. They were cleaning out my wound, and that was the worst pain I’ve ever felt in my life. My mom was there holding me while I screamed. It was like hot pokers going into my skin. They had me on the bare minimum of medication, and I’m like you guys are so great at pain medication, I love it!
B : So not only did she face being undermedicated, doctors were afraid to treat her altogether. This hurt a lot to hear, because I remember a time when I was overmedicated. I was basically given a high dose of horse tranquilizer. Can you believe that? It was like being in Trainspotting. I don’t know if you are familiar with that movie but it was like being in it. I was unable to move, I had to be carried around and I was unable to eat because I couldn’t lift my fork. Again, here’s another instance of a healthcare professional invalidating my opinions about my body.
A lot of the doctors were my age. And they couldn't deal with treating me like that, and a lot of them said they wanted to be taken off my case, which is so good for medical care! Look I’m not your friend, I might be funny, I might seem like you could get to know me, but you’re still my doctor. Be a god damn professional and get out of your feelings. Finally, I came back, they sent me home again after a week of that. I came back and they said: “ok we can’t fix that” so they gave me so many antibiotics that I got CBIF and if you don’t know what that is, it’s like you have zero bacteria in your stomach and your system, and you can’t eat anything because you’re stomach is completely messed up. All I could eat if I ate anything was bananas and white bread.
B : Oh no! That’s like two of the whitest things ever!
E : Yeah, yeah and it was the BRAT diet, and I'm allergic to apples, and I drank a lot of tea too, but it was like “wow this sucks”. Yeah and the doctor came in and said we can’t fix your muscle, we’re gonna have to take your knee. That’s when it really hit me like, I’m gonna lose my knee. I didn’t know what to do, how am I gonna live, like I didn’t know cause I was new to being an amputee. I remember sitting in the ICU with my mother and crying in her arms for a half an hour, I didn’t know what I could do with my life, and after that I was so drugged up, all the time. It’s not like a blur, it’s more like things were jumbled together. And then they took my knee. I was coming out of surgery thinking this is too short for me, I wasn’t happy.
The entire time my right foot was acting up and I lose my knee, my left foot has clots in it! It’s starting to turn red, then brown, then black. I’m just like, I’m taking this freaking medication, I was literally in and out of the hospital, out for one then back in for three. Like, I don’t understand what’s the problem? I really didn’t understand. And they were doing this bypass on my left leg and my veins are so shot, because I had been in and out of the hospital and they’re already so tiny, there wasn’t anything they could do and they tried to save that leg. I was like, first of all, this is painful. None of you guys have ever had to feel this before, but I can’t make you beg in the middle of the night if you have some horrible phantom pain. And that’s it “oh well”. I hope you guys don’t walk out and get hit by a car one day, cuz this shit is not fun for me, I know it’s not fun for you guys and I’m the one who has to deal with it.
B : Do you think they know Black people feel pain?
E : It’s one of those things like, If you’re a black or brown person, they’re like, Oh you know how to heal. Oh am i suddenly not a human person that bleeds red like you do?
They treat us like we’re inferior, but they expect us to be superior and more physically equipped to deal with whatever might happen, whatever physical pain or whatever. Yeah, I might have a high threshold for pain, but it’s not because I am physically designed to. That’s because I’ve had 18 years of experience dealing with this! (laughs) And you figure it out. You take a hot bath with epsom salts, you hang out with your friends and smoke a little weed, because that’s literally the only thing you can do. You make sure you have your pain meds, you figure out ways to not be in the pain, even though you are in pain.
Unfortunately, society has this whole thing, like now there’s an opioid epidemic, why? Because white folks are dying? This has been happening for forever! Now you care? Because more white folks are dying. I see what it is, we’re not actually important, I thought I was an American, my bad. I could go on and on about it because I have the background in non-profit stuff and community organizing. The entire system in this country was designed to make people of color fail. They set it up in a certain way so that if you come from a low income background, like I didn’t have any money growing up! When you’re a part of so many minority groups, it’s like that game where you take one step forward, then you take one step back. Like I’m way way in the back. And I’ve been in the back even before I arrived on this Earth, even before I became an amputee.
B: Time and time again, she faces discrimination, but Eman doesn’t take much from other people’s comments.
E : I’m trying my best to bring us all forward together. But when you have a system that’s obviously and clearly working against you so not that not only do you fail, but a whole group of you fail together? And you’re sick, or you’re homeless, or you’re poor, or you have doctors who don’t provide with the right care.
When you have people who are disabled and part of the struggle and various disenfranchised groups that you are a part of, suddenly you become an anomaly. People are like, Wait, you’re a part of all these things and you’re still here, you’re still alive? It’s like, What choice do I have? Am I going to sit in a corner and not live my life? Or am I gonna fight tooth and nail as I have been doing for the last 33 ½ years of my life. And keep doing it and make sure I bring everybody up up with me. I prefer the latter, I’m not a quitter. I’m not the type of person who gives up on anything. I feel like that’s clear because of my medical history, through doctors saying “Wow you’re still alive!” “Thank you for reminding me!” that I could be dead but I’m not. Thank God!
But it is a miracle that I’m still here, but it’s also about my willpower, cuz I know there are plenty of times where I wanted to give up, and you know what I was like, no I’m not going to give up, I’m going to keep on fighting and that’s like my whole thing with being an amputee is that like, it’s one thing when you’re below the knee, you still have your knees you can figure things out, but when you’re not, you have to figure out a whole new way to walk normal and natural. 2 years ago, I was still in a wheelchair, you don’t get your legs right away, and it’s not like you get it downloaded in your brain, and it’s all this extra work. And I already sweat a lot and it’s even more of a workout to walk around. But I do it, and I’m working to go from a walker to a crutch and hopefully to nothing. But it’s gonna take time, and even though 4 years is a long time, it’s also a short time in the amputee land, I guess.
Everybody goes at their own pace, and at the same time, I still have all my lupus stuff to deal with. I’m supposed to be like Spiderman and be able to climb up buildings and be able to run down the block already. No… even if I was completely healthy, aside from my being an amputee, it still takes work and time.
People just want you to hurry up and you know what, it’s like I’m kinda too busy saving the world. I know that was such a long winded answer, so yeah. I know that was a long-winded intro but yeah!
B: No it was great! What I’m trying to do with this podcast is to just show people what our lives are like, truthfully and honestly and candidly, you know. All I’m trying to do is highlight our community, just put our community on! We don’t get to hear stories like this because we live in an able-bodied world.
E : When I was first new, probably like 9 or 10 months of being an amputee, I was finally alone with my thoughts. That’s when my hardcore depression came in at the time. I was still stuck in this able-bodied mindset. What would my life look like? I can’t even think about where it’s gonna be a year or six months, let alone next month, and four years later, I’ve had to acclimate to things. I can do things that able bodied people can do, well almost anyway, and I’m ok with that. When people ask me, I like to think that there are no stupid questions, and then someone asks me a stupid question!
First of all stranger, why are you asking me all these personal things? Why is it your business to ask me about my sex life? To ask me if my legs come off? Or to ask me to send pictures of what my legs look like without my prosthetics? Will and I live up on the second floor, so I have to walk up 4 steps and I hop up the rest of the 20 steps of stairs. And when I was first hanging out with him, his downstairs neighbor would say things like, “Oh you’re going to heaven for being with her!” First of all, how do you know I’m not a bitch? How do you know whether or not I’m just some fling? You don’t know me from Adam. Why are you assuming he’s using me to get into heaven? Like C’mon, that’s such ignorant crap! And when people assume that Will and I’s relationship isn’t like everybody else’s relationship, that just shows how ignorant society is still about disability and just how they don’t even put two and two together but just because I lost my legs doesn't’ mean I lost my frickin’ vagina, and it doesn’t mean that I’ve lost my desire to be with someone else. Or that I’m worthy of being with someone else.
While I was in a wheelchair, the entire time I was dating and that was some of the worst experiences and parts of being an amputee since learning how to walk better. Some of the things these guys would say was just like “wow! You are an awesome human being! How are you so great and amazing? Oh you just wanna see what sex is like with an amputee? Oh ok I see how it is. You think I should be pitied? I actually gave up when I met Will. I was just like, You know what? Ima be a cool aunty. Like I’m ok with that, I love my nieces and nephews, my brother and sister and I are cool. And then I met him and I was just like, I guess it falls in your lap when you’re not looking anymore.
B : Let’s take a break!
Music from GodHolly’s “Power”:
(lyrics)
It’s the power,
can you feel it?
Just be yourself
The power in you,
Your shield’s what you been through and
your mind is a weapon
Put it to use,
Power,
Power,
Power
The power
Power,
Power.
Power
Power
Power.
B : And we’re back! This episode just keeps on getting better and better! Eman has more to say about stereotypes that able bodied people have about disabled people. Let’s listen in:
First of all, I am not a level of someone who you should be saying, Oh my life could be like hers so I need to be a good person. “ What? My life is awesome! And if you need me to make yourself feel better about your life, you have a problem. And I’m not the one to say, like, one woman in my sister’s building, she had four or five young kids with her, and a couple of them were hers. And I was waiting for the elevator downstairs and the kids were like, “oh yeah your legs are so cool! And I was like thank you, and the mother was like “Don’t be bad kids, because if you’re bad, that’ll happen to you.” And I was like, I just looked at my sister and I was like (sighs deeply), I didn’t wanna cuss her out cuz she was in front of her kids. And I was like, actually I’m a superhero! And I go around saving people, that’s what I do for a living.
Don’t look at it as a bad thing because I’m up and around. It’s amazes me that people have this misconception that number one, disabled people should be locked in an institution, and ignored. And two, that we don’t have active lives, where we have things to do and places to go and people to see. When I’m at a bar with friends, they’re always like, “Oh my gosh it’s so good to see you out!” What do you mean out? Where was I? I don’t have a life? I don’t want to get a drink? I don’t want to have dinner with folks? I’m 33, not 500 and regardless, I want to live my life and I’m gonna! I’m living it better than before I lost my legs. I felt like I had to lose my legs, mourn my legs, to let it go, in order to be birthed from this cocoon into a new butterfly. But some folks have a problem with this current butterfly, and i’m like why? Are you jealous cuz I have cool ass legs?
B : Some of the problems she faces like a lot of disabled people in New York City is with Access-A-Ride, A paratransit service that is run by the MTA. Think Lyft, but for disabled folks. It is notorious for being ignorant of the needs of disabled people. I have experienced my fair share of waiting hours on end to get to my destination. Unfortunately, it is all we have to get around the five boroughs, unless we want to take the train or the bus, which can be gravely unsafe and horribly inaccessible.
Eman’s work with New York Lawyers for the Public Interest is all about advocating for disabled people in town meetings with government officials. I went with her to just one town meeting, and it was appalling to see how little the MTA cares about disabled people, the ones who they were hired to serve.
E : Yeah, since the first time I had this job, it sort of changed around, not changed around my view of Access-A-Ride, but what it can be and what it should be. You know even before I started working at NYLPI, I already gonna do some town hall meetings. Either we do this together and I will tell you what I find. So luckily they hired me, and we’ve been doing it together. The only unfortunate thing is that Access-A-Ride knows exactly who I am and knows exactly what I’m doing, the service has not changed at all! Is my time not important because I have metal legs? Is my time not important because I use a walker? That just makes me feel like that they not only don’t respect our time, they think that we don’t have important things to do or important places to go.
Believe me, if I could take the bus and the train, I would take the goddamn bus or the train! Could you imagine if it’s not an accessible station and I have to climb up the stairs with my walker? Like how’s that gonna work? What happens with that? If you had more accessible train stations, I wouldn’t have to rely on Access-A-Ride, which is so unreliable!
If I can’t walk up and down steps in the station, if I can’t take my time, then no! If I could walk a block and a half, I would take the damn train! Everytime I try to walk in Manhattan, no one is paying attention to me. People have bumped into me and almost knocked me over. If my balance wasn’t as good and if I’m holding on to dear life from my walker, I would have fallen over!
B : I have to take Access-A-Ride practically every day, and I run into some of the same problems, you know, it makes me bitter about, cause I’m a native New Yorker too, and just to know that New York City doesn’t have our wants and our needs and our priorities in mind. I love New York, New York is in my heart, but sometimes it makes me feel like moving.
E : Yeah, unfortunately, the thing is as bad as it is, it’s better that other states. For example, Boston is starting to do things around accessibility and around having a paratransit service. But a lot of other states say “We don’t have the capacity to do that”. “Well, we don’t have that many disabled people”, well have you asked? There are lots of other states that say they have a running paratransit system, but I don’t believe that.
As a whole this country has not, like why did it take what happened in the nineteen eighties and the nineteen nineties to fix the way this country treats disabled people. Before, they were like we’re not gonna worry about accessibility to a building… Nah, yeah we’re just gonna lock you up in these nursing homes, and rehab places and they say that’s the best they can do. What do you mean that’s gonna be the best you can do?
Would you want to do that to your mother? Or your father, brother sister, or you? People don’t get it until they you make it personal.
B : And here is where I wish able-bodied people knew how personal the relationship between inaccessibility and necessity can get. Eman has had to deal with inappropriate conversations with Access-A-Ride drivers, men who follow her into public establishments, and people who ask her questions or make assumptions about her body.
E : 74% of riders according to our surveys have had inappropriate conversations with their drivers. In the beginning of this campaign, my coworkers were like “Oh we don’t have to talk about that” “Why? Because you don’t think disabled women and disabled men could be sexually harassed?
There was this Starbucks across the street, so I thought I would go get some coffee, charge my phone, and hang out for a minute. This guy was on the corner and he was asking details about my legs, and I don’t care, it’s whatever.
He proceeded to follow me down the block and into the Starbucks! Then, he was like, “Oh fancy meeting you here!”. I asked him “Did you follow me one block down the street?” He said, “Oh yeah I just wanted to see if I could take you out?”
“What you did was not ok!” Luckily there were a whole bunch of people in the Starbucks but this happens to me all the time and people think that it doesn’t because I have metal legs. That has nothing to do with that. If someone wants to be inappropriate with you, they will and it doesn’t matter where you are and where they’re at.
Some people come up to me and they try to touch me! And it’s like why are you touching me? Why do you think that just because I’m disabled you have a right to put your hands on me? You don’t know me! I constantly surprise people because they first of all, don’t think that I have a brain, and they’re just like “Oh my god, you’re so well informed!”. What did you think that was gonna go away when I lost my legs? So because I don’t have legs, I’m suddenly mentally incapacitated? When I was in a wheelchair, people would never talk to me, they would always talk to the person I was with.
But it just shows how this country is, this country doesn’t care about or give a crap about disabled folks. I feel like, if I don’t do it who will? I have a big mouth (laughs), I know a lot of things, I have a lot of followers on Facebook and Twitter, I want to use that. I want people to see that disability is not what people think it is. I feel like the movement is absolutely more important than the both of us, and I want to give it one hundred percent. And when you’re like a woman of color and you already deal with so much stuff, when you take a moment of self care, the world is like no!
But luckily this is a group of people who actually don’t want me to burn out, and want me to be ok, so that I can do the work. They recognize that me doing ok is part of the campaign. (laughs) I’m so amazed that they do that for me because they are awesome and amazing. This was like, such a stroke of luck that I even came across this job, and they saw the value in me and hired me.
B : I’m really glad that you have an ideal job situation for you but it makes me a little bit sad to hear that because it shouldn’t have to be a stroke of luck for you. It shouldn’t have to be something you are surprised about because the world should be able to adapt in the same ways that we do! The world should bend for us, not the other way around.
E : I think the world is so used to being able-bodied, some one else comes into the picture, they’re like “No, we can’t accommodate you.” It’s always an accommodation, it’s not like just the way it is. Am I not American enough? Am I not enough of a contributor in this society? Being broke and disabled in New York is not a good look. Like they’ve told me because I’m not mentally incapacitated I can’t receive services. What? I didn’t know that I also have to have a mental disability in order to receive services when you are already physically disabled. And it wasn’t for a lack of trying either, I applied to jobs all over the place and because I was sick for so many years, I had gaps in my resume. And they would be like, Why do you have so many gaps in your resume? And they’d be like, have you not seen my legs? My hands are misshapen because of my neuropathy that happened years ago. I was consistently sick for a number of years. Years ago, before I got my leg braces, I had a bunch of employers tell me “Well this isn’t working for us.” And I’m just like, I don’t know what to tell you, I can’t turn my lupus off! I can’t turn off my clotting disorder.
This country is like, instead of curing diseases, they give you a placebo to keep you just well enough but not one hundred percent, so you can stay on the drugs forever. Yeah, my ex has this theory that, you know maybe it’s a place thing, like maybe they put out certain chemicals in certain places which causes these autoimmune diseases to flare up. And I don’t want to think these folks are malicious at the same time, studies come out about chemical warfare they’ve been doing to people of color.
The majority of the women who I’ve met that have lupus has been Black women and Chinese women. Why is it such a high concentration? Once again, I don’t want to think that the government is this malicious but considering they’ve done this already, that’s a concerning thing. Oh wow, you guys are straight up evil, you don’t give a crap if you’re killing entire populations! I think they would probably assume that I was dead 10 years ago, but for whatever reason I’m not, some miracle kept me here, and they didn’t realize I’m harder to kill than they thought. Which is you know, sort of funny and ironic at the same time… (laughs)
B : …And beautiful. I really do believe that in sharing our stories, that’s part of how things will change.
E: Ninety percent of my friends are able bodied people who had no experience with anyone in a wheelchair, didn’t know any amputees, didn’t know anyone who was disabled of any kind. And they were just like “Wow, you changed around my whole view of this. You’re out here living your life, and you’re disabled. That’s so new to me” and I’m like well, shit, it’s new to me too!
Lupus is a whole other ball of wax. It was sort of an invisible disability for a number of years, so people automatically assumed that there was nothing wrong with me. Even before I was diagnosed, my mother thought I was joking. That I was making something up, that I didn’t want to do housework, that I wasn’t having chest pains. That I was just lying. Then when she figured it out, when I was in the hospital, she was so apologetic. Even now after all these years, she still wants to do everything for me.
I was 15 when I started to feel sick and I wasn’t diagnosed until I was 17. At the time, I was exercising a lot and doing a lot of track and suddenly I was feeling tired and really out of it, and then I couldn’t eat anything. I kept thinking, Am I developing an eating disorder?, but it wasn’t an eating disorder. It was just my body literally freaking out because suddenly my lupus was there and it was like, I’m just gonna poke at your heart, I’m gonna poke at your spleen and all your internal organs, your arteries, your everything else. I went from being a healthy, fit 150 lb. 5’ 8’’ woman to 108 pounds and looked like an alien. I looked sick. And I think that if I hadn’t went to the hospital when I did I would’ve died. They said I had a heart attack outside of the hospital, and then inside the hospital because they didn’t believe me when I told them I was having chest pains. When you have a heart attack, there’s like heart attack residue in your blood and so they told me, “There was a lot of heart attack residue in your blood, which leads us to believe you had a heart attack recently while you were in the hospital”. I was in the hospital for three weeks before they figured out.
As much as my lupus is responsible for all this, living healthy is really really important. Luckily, I don’t have any other drug issues or alcohol issues, every once in a while I’ll have a drink. I try to eat as many vegetables as I can. I still do my yoga, I try to meditate as much as I can and try to keep myself as zen as I can with my little potty mouth and I keep it moving.
B : I know it might be scary, but joining the disabled community can happen at any time and probably will join at the end of your life. After all the disability community is the largest minority in the US. But the community is so strong and vibrant and welcoming, you have no worries about whether or not you will be alone.
E : Some people might be like, well, oh you lost your legs, but I’m like, No I gained my life… What would you trade to have your life? Legs? Ok. Yeah, it sucks but it just sucks now. It’s just a matter of time. Maybe in another ten or fifteen years, prosthetics will be different. Maybe in another ten or fifteen years they’ll create a drug that turns around autoimmune disorders and cures lupus. Maybe in another ten or fifteen years, this country will start to treat disabled people like people.
My life isn’t over, I feel like I’m at a rebirth. And I’m a completely different person. I have cool prosthetic legs now, I miss my heels, but I have all of these new kittie shoes, and I love my kittie shoes and they’re awesome. If eventually as I go down the line and get better at walking, I’ll get on heels but I am totally fine with my kittie shoes!
B : (laughs)
E : I’m fine with that. And yeah, not every day is easy. If life was meant to be easy, we would not be living on this Earth dealing the things we’re dealing with. That’s just how it is and I am built to last, I’m tough. I can push myself, and I have a support system around me. I have a great relationship and a great job and I’m gonna keep on being great, and it’s as simple as that.
B : So what’s her advice for able bodied people who want to challenge ableism?
E : Have a conversation! Get to know somebody and don’t ask dumbass questions! Talk to them as you would talk to any of your other friends. Because you never know who you’re going to become friends with if you don’t talk to them and make a connection. As much as I love being an inspiration to people, I am really tired of being everybody’s token disabled Black, Palestinian friend. No! It’s not my job to be your token anything! Like, meet some people, do something!
If people wanna open their minds, shit, hit me up on Facebook! Just be aware if you ask a dumb question, I’m gonna give you a smartass answer!
B : (laughs)
E : But like, I know a bunch of people who are cool, amazing, wonderful, brilliant, beautiful, talented, intelligent people, who just happen to be disabled. Like, we’re people with disabilities, but we’re people first! I still go through all my lady things, once a month. Will and I still have an intimate relationship. Eventually, I’ma pop out some kids. Cuz my life is just like everybody else’s. It’s just so funny to me how people think you’re not going to live your life because suddenly you have a disability. I’m like, “I didn’t get that newsletter, maybe you got that newsletter that your life is over, but mine’s not.”
B : So of course I had to ask her: What’s your disabled power? I knew whatever it was, it was going to be epic!
E : I feel it has to be something connected to infinite lives. I’ve almost died, I don’t know, like 15 times and I still kept bouncing back. It’s almost like on Street Fighter, where you have like three lives, but suddenly you might get, like, an additional life. I feel like I have unlimited lives, that I’m really hard to kill. I’m like Chun-Li, I’m that gangsta! I’m like Chun-Li, I still have all these physical issues, but I’m still so hard to kill. (laughs)
B : (laughs) Ok, ok! It’s whatever you want it to be! That’s amazing.
E : I mean I would love to be like a shapeshifter, like a person who could turn into a cat? I would love that! I would so love that power!
Yes! Our lives are just as valuable and complicated and beautiful much like Eman’s story was. She had so many sound nuggets, I don’t know where to even begin! Of course towards the end of the interview, I couldn’t help but think of my own struggle while she discussed her issues with ableism. We have so much in common and I don’t think it’s a coincidence that we are both Black people.
If there’s one thing I took away from this episode, it’s that representation matters. Say it with me: Representation matters! Let’s do a thought experiment: Imagine a world where disabled people (especially those of color) authentically show up in movies, tv, and books. What if disability justice was taught in our schools? What a world that would be.
If you want to hear more from Eman, her handle on Facebook is eman dot rimawi and her on Twitter is Eman underscore Rimawi.
Wanna know more about Power Not Pity or listen to past episodes? Take a look at my website! That’s www dot powernotpity dot com. Check out my Facebook Page at the handle powernotpity. My twitter and instagram accounts have the same handle too.
Shout out goes to GodHolly (that’s G-o-d-H-o-l-l-y) for the music! The song you heard throughout the episode is called “Power” and is actually featured on the CW tv show “Black Lightning”. It’s a really good show about a Black family of superheroes! It’s right up my alley!
If you like what you heard and would like to keep the show going, please consider checking out my Patreon page! That’s patreon dot com slash powernotpity. I hope you appreciated this episode as much as I did!