Emmanuel's Crusade for Workers with Autoimmune Diseases

When Emmanuel's life was touched by the invisible struggles of autoimmune disease within his family, it ignited a fire within him to champion the rights of workers grappling with similar battles. As the founder of the Workers with Autoimmune Aliments Alliance, his story—shared on our latest podcast—encapsulates the drive behind a movement that's not just personal but pivotal for countless individuals. Together, we unravel the complexities of autoimmune diseases in the workplace and the essential legislative strides being made to ensure those affected are no longer unseen or unprotected.

Peek behind the curtain of the "Invisible No More" documentary project with us, where the realities of those living with autoimmune diseases are brought to light. Emmanuel's insight into the stigma and challenges faced by employees with these invisible ailments underscores a pressing need for societal empathy and change. We cover the groundbreaking progress in Maryland with the Employee Autoimmune Disorder Protection Act, and how advocacy efforts are far from over. Lend us your ears and, perhaps, your voice to this cause, as we discuss ways to amplify the mission and ensure no one is forced to choose between their health and their livelihood again.

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Transcript

Jen: 0:42

Hi MySpoony sisters. It's your host, gracefullyjen, and I am here with Emmanuel, and he is from Workers with Autoimmune Aliments Alliance. Everyone deserves to work and learn in a safe environment, so welcome to the show. And how are you today?

Emmanuel: 1:00

I'm doing great. It's a holiday while we're filming this, so I've had lots of free time, so I'm feeling good and I got some good rest today. I'm glad to be here. Of course, I'll tell you guys more about our mission.

Jen: 1:13

Yeah, I'm super excited, so you do. Do you mind diving in and telling us what your mission is with this?

Emmanuel: 1:20

So I'd say our biggest goal is to protect the rights and the dignity of people who are suffering from autoimmune illnesses and also people who are immunocompromised. So I'll tell you a little bit about kind of why I got into this work. First, it's based on not only personal experience but experiences in my family as well. My mother, way back when I was a little kid, was diagnosed with a disease a lot of people don't know about. It's called complex regional pain syndrome, and this disease is extremely dangerous. It's an autoimmune condition that attacks the nerves in your body and essentially what it does is it can often cripple people and also make them immunocompromised, and it can hurt them in a million different other ways.

Emmanuel: 2:10

I took her years to get diagnosis, which is something that a lot of Spoonies kind of suffer with, but with her she almost died when I was in high school as a result of that illness, and so it's a whole issue really hits very close to me. I saw firsthand how hard it was for her to often get and keep a job as a result of that illness, because she's needed so many accommodations that companies unfortunately just don't want to give, and she went to the University of Pennsylvania. She's extremely intelligent, extremely hard-working, but even she just had extremely hard time in the workplace as a result of this illness. And then I myself suffered from being immunocompromised when I was diagnosed with late-stage AIDS in 2022. Obviously, I'm a lot better now.

Emmanuel: 2:59

I've been taking medication for a while, but when I was first diagnosed, I was extremely sick and my boss just kept denying my ability to work from home, even knowing that I had AIDS, and so kind of seeing how cruel so many businesses can be against somebody with this type of illness kind of motivated me to start this organization, and so our mission is twofold. One, we're actually mostly a student group. We protect people on college campuses who are suffering from these illnesses, but to make sure they're able to learn remotely, because that's a big problem for a lot of students. And then also we're trying to pass different laws on different states that essentially expand the right to work from home and to make sure that people are able to gain that protection, because I think that's just key for so many people If you're able to self-isolate and work from home, that's proven through studies to reduce infection rates by 40 to 60 percent. So that's kind of why I do this and that's what I were really fighting for as an organization and that's a huge percentage rate, right?

Jen: 4:07

I mean that's just crazy. So how long ago did you start this?

Emmanuel: 4:14

So I started this last year. It was a day before June, team fact, it was June 18th 2023. That's when we started. Back then it was just we weren't even really doing all of this. We just had a ballot initiative in DC for this, called the Artur Immune Protection Act. It was just me and my co-founder, who's my girlfriend. It was just two of us kind of out there just collecting signatures for our petition, and then we pretty quickly figured out that this is something that we can pass as a full-blown law pretty easily, and so we first started working with legislators in DC, and then we, of course, expanded to other states as well.

Jen: 4:56

So how many people have jumped in on this with you now?

Emmanuel: 5:01

So our core team now is around six people. So we've actually kind of built a decent-sized staff or something like this. It's a small team but I think it's pretty effective so far based on what we're trying to do. And then when it comes to our work on college campuses, we have around six campus ambassadors that really help us identify what problems are on college campuses and then also who help us then kind of create solutions for their campus and really advocate with the people on the staff there to really make it happen. So in total we have 12 people.

Jen: 5:44

That's wonderful. Are you all located on one campus or multiple campuses?

Emmanuel: 5:51

So so far we're at James Madison University, american University, and now our biggest chapter is at Howard University. The first one it doesn't know is in HBCU, the most successful one actually on DC, and, yes, we've seen, I'd say, the most help, probably because a lot of autoimmune diseases hit the black community more than a lot of other communities. A lot of people may know that lupus impacts black women at a rate three times as high as it impacts everyone else, and so there are a lot of diseases that impact the black community a lot also like MS, and so I think that's one of the reasons why Howard has been so responsive to this. And, funny enough, the sponsor of our bill in Maryland, which I'll get into probably later, is also from Howard University. So it's an issue that I think re-resonates with them, and I'm glad to have the help that I've had from them.

Jen: 6:48

That's phenomenal. I love that. So how did your legislative work begin?

Emmanuel: 6:55

So our legislative work started, like I said, when it came to that ballot initiative. So we kind of crafted it and it was called the Autorimmune Protection Act, and what we really wanted to do there was make sure was, first off, to clarify the law, to make sure that it just clearly says that if you have not immune disease or immunocompromised, that you have this right to work from home. And then, on top of that, we also wanted to make sure that people have the ability to wear a mask at their workplace. Believe it or not, we've heard many stories of people being denied their right to even wear a mask in their workplace Just because it's been so heavily politicized. So we wanted to make sure that those two rights were defended, and we wanted a better enforcement system than what we currently have. So that's how it started in DC. We started working with legislators there, and we still are working with legislators there to make that happen. But as time went on, we pretty quickly understood that this is something that's needed everywhere, obviously, and so we started talking to people in other states as well. I probably said it like thousands of emails about this different legislators just over and, over and over again, and it's a brand new idea. So often people don't take it seriously, they don't respond. But in a few states like Maryland, they have responded, and so we actually have a bill now finally being introduced in the state of Maryland, and they called it the Employee Admin Disorder Protection Act. And that law is amazing because not only does it give people the clear right to work from home, it expands that right to also include small businesses. As you may know, around half of all Americans work for small businesses, and current laws say nothing about what they have to do for people who are immunocompromised. This is a big win for the immunocompromised community, and in addition to that, the law also says that there's a better enforcement system.

Emmanuel: 9:01

So, as it works right now, first you have to go through what's called the EEOC, that's the Equal Employment Opportunity Commission, and so you have to go through a whole investigation process with them, which can be very expensive. You usually need a lawyer for that and then, at the end of that process, which can take around a year or even two, you then receive because they don't enforce the law themselves. It didn't give you a right to sue, so instead of being able to sue the company yourself, you have to go through this long process, then you get the right to sue. So once again you need a lawyer, which is extremely expensive, and then after that you have to go through the whole legal process where you have to basically argue about whether or not the right to work from home counted as a reasonable accommodation, and then, of course, the company says it wasn't. You have to go back and forth and back and forth. You may or may not win the case With this law.

Emmanuel: 9:53

It clearly clarifies when and when, when and when not the right to work from home counts as a reasonable accommodation. And then also the enforcement system. Instead of you having to basically go through this middleman before you can actually sue the company. Instead, the labor commissioner themselves investigates it and if they find that the company violated your rights, they just find the company, and that takes the burden of enforcement off of the average citizen, which is extremely important because, as you know, people who are chronically ill often don't have the money to go through this long legal process. People with MS on average, their treatment can cost $50,000 to $90,000 per year. So spending a few extra $1,000 on a lawyer is just completely impossible for most people and most of the people I've talked to who have gone through this. They don't even try to sue the company because of how much time it takes and because of how much it costs, and so we're very excited about this bill in Maryland and hopefully we can one day make this a federal law as well.

Jen: 11:03

Okay, so is that the direction you wanna go next, and how would you go about doing that?

Emmanuel: 11:10

So once we get the law passed, at least one state, because I think it's important to go through that process From there. I mean I guess I just do the same thing I did with Maryland just send a whole bunch of emails to legislators who are in Washington DC, and since I live at least part time in DC, I can even just go visit the office even and talk to them. So we hope that the kind of momentum that we build from passing this first in the nation law in Maryland will kind of give us the strength to then do it for the federal government as well. So that's kind of our hope so far.

Jen: 11:48

Okay, so for those listeners that are not super familiar with doing these kind of things, if they live in a state where they wanna see this passed, what would you give them for advice about trying to make this happen?

Emmanuel: 12:02

Honestly, I would say contact us. I'd say, contact the workers who are in the ailments alliance. We're always looking for more states to expand to. About a lot of times, you know, if you physically live in an area, they're gonna take you more seriously than some small organization, and so we definitely wanna partner with you. I would give you the same presentation that we gave the legislators to make this happen, but At the end of the day, just in general, what comes the generating change? I'd say the biggest piece of advice I can give people is to be persistent. You have to talk to probably hundreds of lawmakers before you'll find that one lawmaker who will actually go ahead and be willing to champion your cause. Because oftentimes, if you're not a big corporation with a lot of money, or if you're not some big group that has literally millions of people already on your side, it's going to be really difficult. And so that persistence and that ability to just keep going, it's going to be the most important thing for you when it comes to this.

Jen: 13:05

What are some common challenges faced by workers living with immune system disorders?

Emmanuel: 13:13

So I guess I'll back up for a second, because I've learned a lot of this in the course of filming a documentary that we're creating called Invisible no More. That actually goes through these exact challenges and really we're trying to showcase to all society what these issues are. The number one problem that people have in the workplace is the fact that most businesses have not caught up with the times. They still view working from home as this luxury, as this privilege to give people, and so they don't really understand if this is something that people truly need. So oftentimes because these illnesses are invisible, because you can't physically see someone, for example, in a wheelchair with a limp often businesses just don't believe people.

Emmanuel: 14:01

There's very little awareness about autoimmune diseases. I've talked to plenty of lawmakers who don't even know what an autoimmune disease is and so people just struggle a lot with understanding the limitations of people with these illnesses and then believing them, and then that often results in a lot of stigma in their workplace, and so they not only just don't receive the accommodations at all. A lot of times, even if they do receive them, they receive a backlash later on. People just don't take them seriously and think they're just lying, and then not only you know their manager, but their own coworkers, who should be on their side, will often look down on them. So I think that spreading awareness is extremely important because of that. I was talking to one person who simply just kept getting sick over and over again because she was terrified of going and just telling her boss hey, I need this accommodation, because she knew that she would receive a backlash or a rape. And people shouldn't have to go through that. They shouldn't have to suffer in silence just because a society as a whole just doesn't understand them.

Emmanuel: 15:10

So to say, it's really the biggest problem that people face. And then because of that problem, because they don't get the accommodations they need, they just get sicker and sicker, and sicker, and so eventually they just lose their job because they can't do it anymore or they just can't handle other pain. One of the biggest problems that people have is fatigue, and just something. Not only just the stress of the situation, but also the extreme pain that they feel often just on their way to commute to the job will tire them out and make them less effective at their work and causes performance issues. I think a lot of companies don't understand that their workers would be more effective if they had the ability to work in an environment that's comfortable for them and that's safe for them. And that's really, like I said, the biggest issue that people face is a lack of understanding.

Jen: 16:00

Absolutely. So let's back up a little bit and can you explain to us this project and what it looks like?

Emmanuel: 16:07

So I legislatively, or just the organization as a whole?

Jen: 16:12

No, the recording that you're doing.

Emmanuel: 16:16

Oh, okay, so Invisible, no More is.

Emmanuel: 16:19

We started this very early this year because and the reason I started this was because, like I said, I just met, like so many lawmakers, who had no idea what the issue even was in the first place.

Emmanuel: 16:34

So when I was giving you know, all these presentations to people, I had to spend so much time just explaining how many people have autoimmune disorders, what they are, how they impact your health, why it's necessary that they then have the right to work from home, so on and so forth, and I realized that this ignorance isn't just with the lawmakers, but with society as a whole, and so we started this project first, just put like a bunch of like not ads, but, I guess, like posts on Facebook asking people to come kind of do it. No one responded there. I mean, facebook just wasn't working that well. So then I kind of reached out to people who were already kind of talking about their stories on Instagram and found a lot of people who wanted, who were looking for something like this, who wanted to share their story but never been able to tell it before, and so from there we just started talking to people about their problems and about the struggles that they face.

Emmanuel: 17:33

So far we've interviewed around 20 people, mainly over Zoom, obviously because of the nature of these illnesses, but for some people we're safe. We're also going to start filming in person and hopefully we can really shed more light on this problem, Not just in the workplace, but also problems that people have had in school and people problems have had in a doctor's office of just simply not being believed. There was one woman where it took her so long to finally be believed by her doctors and get a diagnosis but that by the time she did so her disease had progressed to the point where now she's permanently in a wheelchair. And if that had been caught earlier, if there was more awareness about this, that would not have happened. She would have gotten the help that she needed, Her doctors would have actually believed her and then she would have actually just gotten the help she needed and not ended up in a wheelchair.

Emmanuel: 18:33

And the fact that so many people are having permanent injuries as a result of this lack of awareness is what really motivates me to keep doing this and to keep raising awareness about this issue, Even if we get these laws passed and people need to know what's going on, because most people have some basic empathy and when they see someone in a wheelchair and who's limping, they take pity on them and are willing to help them. Already it's just the fact that these invisible illnesses just don't get that same sympathy. Because they're invisible, because people just don't get it. And that's why we titled it invisible, no more, because that's really our goal is to make these people around 23 million people who are right now invisible because of the nature of their illness visible so that society understands what's going on and then takes the appropriate steps to help them.

Jen: 19:22

Okay. So if somebody wants to jump on and join in this, what do they need to do? Do they need to contact you directly?

Emmanuel: 19:33

I would say either send us a DM on our Instagram page at WAAA or send me an email at immanuelwaaorg. That's probably the best way to get in contact with us and from there you know, if you want to help out legislatively, you can show you how you can do that and help spread this part of your state. But if you want to be a part of the documentary, simply ask us and we'll talk from there and figure it out.

Jen: 20:01

Wonderful Well, thank you for taking the time out of your day to join us and explain more about this.

Emmanuel: 20:09

Alright, and thank you so much for having me.

Jen: 20:11

Absolutely. Is there any last advice or information that you want to share with our listeners before we go?

Emmanuel: 20:21

I would say don't forget to, especially if you're suffering from something like this. Don't forget to stand up for yourself. At the end of the day, you know, a lot of people just aren't going to understand what's going on, and there's only so much you can do with that. But I think to a certain degree you do have to stand up for yourself and tell people exactly what's going on, because if you don't, you don't advocate for yourself forcefully. Oftentimes that means that you're simply just going to get sicker and you're going to put yourself in a dangerous situation. So never be afraid to advocate for yourself. And if you're somebody who is just a listener, who's not getting sick, who doesn't really have this issue, I would say listen to people around you when they tell you that they have one of these illnesses. Don't just assume that they're lying just because you can't physically see it. Make sure that you're doing your due diligence to learn how you can help them.

Jen: 21:20

Again, thank you so much for joining us and I can't wait to see where everything goes with all of this, and we're excited to support you.

Emmanuel: 21:31

Thank you.

Jen: 21:32

Alright, until next time. Don't forget your spoon.