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Episode 6: Is COVID-19 a Disability?

Wednesday, February 17, 2021
GUEST: Marjorie Roberts, DBA | Certified Life Coach and Speaker

In this episode, Dr. Marjorie Roberts shares her personal insights and experiences as a COVID-19 Long Hauler. And we discuss why she's pushing so hard for COVID-19 to be recognized as a disability. With her life turned upside down in a matter of hours, she's spent the last 12-months advocating for herself and others in the COVID-19 Community. She says, "We're on a mission to be heard. And COVID-19 is a disability. This is the bottom line."

QUICK LINKS

As language, perceptions and social mores change at a seemingly faster and faster rate, it is becoming increasingly difficult for communicators to figure out how to refer to people with disabilities. This style guide, developed by the National Center on Disability and Journalism at Arizona State University, is intended to help. It covers almost 200 words and terms commonly used when referring to disability.

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OUR GUEST: Marjorie Roberts, DBA

Marjorie Roberts DBA

Certified Life Coach and Speaker, Dr. Marjorie Roberts

Greetings and thanks for taking the time to find out a bit more about me. 1st and foremost I am a Covid-19 Long-hauler/Survivor/Advocate.

My name is Dr. Marjorie Roberts. My husband and I recently relocated to Johns Creek, Georgia after calling Philadelphia, PA home for over 30 years. I gave birth to my very best friend Leanne who decided to relocate shortly after. I have a Doctorate in Business. Interacting with people throughout the years, I have come to understand something very fundamental, regardless of backgrounds or current situations people are looking to survive and thrive as human beings. With a strong business background in both the retail and restaurant industries, I have always focused upon an individual’s personal growth and happiness.

My skills of providing structured questions to help organize an individual’s thoughts and excellent critical thinking skills for helping others set tangible objectives, have been thrust to the forefront in recent years and led to a career change to my becoming a Certified Life Coach. As a life coach contracting Covid-19 has meant personally I have to face some hard truths about my total existence and how I must now take the form of a realistic assessment of my life and how I can help others as we recover from Covid-19. As an active member of several grassroots group Covid 19 Survivor groups, my approach is life coaching is not a do this and that will happen concept for me; it is a reaching deep, planning and allowing myself and others to come through and out of this experience whole and complete as possible.

TRANSCRIPT

Sarah Kirwan:

Hi, and welcome to Incluse This! I'm your host Sarah Kirwan, and this is a movement for disability equity. Today we're talking with Dr. Marjorie Roberts, and we're talking about COVID-19 and disability.

 

Sarah Kirwan:

Greetings. Thanks for taking the time to find out a bit more about me first and foremost, I am a COVID-19 long holler survivor and advocate. My name is Dr. Marjorie Roberts, my husband and I recently relocated to Johns Creek Georgia after calling Philadelphia, Pennsylvania home for over 30 years, I gave birth to my very best friend, Leanne, who decided to relocate shortly after I have a doctorate in business and interacting with people throughout the years. I have come to understand something very fundamental that regardless of backgrounds or current situations, people are looking to survive and thrive as human beings with a strong business background in both the retail and restaurant industries, I have always focused upon an individual's personal growth and happiness, my skills of providing structured questions to help organize an individual's thoughts and excellent, critical thinking skills for helping others. Set tangible objectives have been thrust to the forefront in recent years and led to a career change to my becoming a certified life coach.

 

Sarah Kirwan:

As a life coach contracting COVID-19 has meant personally, I have to face some hard truths about my total existence and how I must now take the form of a realistic assessment of my life and how I can help others. As we recover from COVID-19 as an activist member of several grassroots COVID-19 survivor groups. My approach is that life coaching is not a do this, and that will happen concept. It is a reaching deep planning and allowing myself and others to come through and out of this experience whole and complete as possible. Yeah, let's just get started. I just want to say Marjorie. Hello and welcome to include this. I'm thrilled. You're here. I'm really passionate about this conversation that we're going to have about the relationship between the COVID-19 community and the disability community, and really, how can we embrace one another and support one another? And so I'm really happy that you're on today because it's such a curious question for me.

 

Sarah Kirwan:

I was just doing more research this morning and came across an article that says at this point, the COVID-19 has not been designated as a disability under law. Before we dive into all of that, I just want you to share with us your story.

 

Dr. Marjorie Roberts

I’m quickly approaching my 11th month of COVID-19. My first symptom was March the 26th. As you can see, March the 26 is just a few weeks away. From the 26 on to this very day, my life has forever changed. I don't have the stamina that I used to have. I'm not able to do a lot of things that I used to do, and the way that I look at it now, I always say, mentally, I'm in a really good place physically I have to catch up. So my mind is sharp. I'm so thankful that my mind got saved in this thing. COVID-19 is really dark and scary. If you don't do everything you can to protect your mind, it'll go. If your mind goes, then everything else is gonna follow. That's vice versa with the healing process. Now that I got my mind in the right place, I'm just doing everything that my awesome team of doctors are telling me to do.

 

Dr. Marjorie Roberts

For COVID-19 again I say, it's definitely not a hoax. It changed my life in one day that morning I woke up on March 26. I was fine. I was functioning fine. I was, I was living my life like it was golden. By the time the sun went down little did I know that almost 11 months later, I would still be dealing with the after effects of the storm of COVID-19.

 

Sarah Kirwan

Yeah, that's incredible. What are some of your day to day symptoms? Can you go back to that day? I mean, I feel like it's been March for a year. To be honest, it’s like March never ended.

 

Dr. Marjorie Roberts

Yeah. Like Groundhog day. Definitely.

 

Sarah Kirwan

Yes, but you've been doing much more Marjorie since you were first diagnosed with COVID and you had an experience before you were diagnosed. Like, can you share with us that experience with providers that you had?

 

Dr. Marjorie Roberts

Yeah, that was again, I did not see that coming, but COVID-19 when I first contracted COVID-19 early back in March, it was new. I get to the emergency room, it was like something out of a horror movie. Everybody was PPE’d up, everybody was all messed up and, they had a special section for people like myself with these symptoms that I had been going through, which was diarrhea, really bad nightmares, loss of balance, no appetite, spinning dizziness, nothing down, couldn't function, and all of that going on at one time, it was a storm growing in my body. I get in the emergency room the first time, tell them everything right away. They're like, Oh, okay, well, we're going to do what we do when you come to the emergency, they check you for check your heart, checking lungs and everything like that. And I was just so sick.

 

Dr. Marjorie Roberts

I was dehydrated. I was dry. I was totally dry. They, they caught that right away and they hooked me up to the app and everything. They were just doing a series of tests so fine. They come in and he's like, well, you're going to have to take COVID-19 tests. Now, mind you, this is early April and the only thing I knew about this COVID test is what I saw on television or what I seen on the internet or how it looks like this extra-long Q-tip that they were just sticking up the nose. To make a long story short, I went through that process. They done that. They just did one nostril. Back then, I didn't know any better. Did the one, the results came back and they told me, Oh, well you have upper respiratory infection. You don't have, COVID go home drink plenty of water, stay hydrated, take Tylenol if need be. You’ll be just fine.

 

Dr. Marjorie Roberts

I left the hospital that night, thinking like, okay, this is, I can deal with this. That was not true. From that point on, from April 4th I continued to get even sicker, I just began to just explain that COVID-19 was just revving in my body just totally taking over. I couldn't walk by myself. I couldn't, my husband had to help me from point A to point B. I had no energy. I felt like somebody had just took a vacuum cleaner and sucked the life out of me. The diarrhea was going crazy. The hallucinations. The nightmares. It was just a lot going on. So May 28th I get sick. I get real sick. My husband was like you got to get out. They take that to the emergency room for the second time. The second time was worse than the first time, because they were like, look, you were just here, April 4th.

 

Dr. Marjorie Roberts

We told you nothing's wrong with you, you need to contact your primary physician. Stay hydrated. We're not going to test you for COVID now because we told you did have it. And I’m like please help me. Help me. I'm crying, Help me. They give me more fluids. Send me home. Tell me the contract. You know, get my primary physician. Now mind you back then in early COVID the doctors are pretty much shut down. You couldn't go into the office. It was a wait in line for them to call you back. I finally got who I thought was going to be my saving grace. I got in touch with my primary physician was able to get a phone call with her, started to tell her what was going on with me. I'm thinking, okay, the calvary has arrived because she had been my primary physician for five years. I’m going through and telling her what’s wrong and I’m crying.

 

Dr. Marjorie Roberts

I'm hysterical. I'm telling her what's wrong. She comes back on the other end of the phone. She says to me, it sounds like it's stress. You don't have COVID because you're not sick enough. You don't sound sick enough. You're not sick enough if you had COVID, you would be in a hospital, hooked up to a ventilator. I'm like, but that's all that I I'm buttoned up. But, but no, no. I don't feel good. I can't sleep. I can't eat. I can't breathe. You can hear me panting like a dog. She says to me, well, what's wrong with you? Marjorie is you've been watching too much television. Oh my gosh. Yes. You are mimicking what you see in on television. If you want to feel better, I suggest lifetime movies and work some puzzles. By that point in the conversation, I just leaned over in the chair I was doing because the one person that I thought was going to help me, this woman that had been in my life for five years, that knew me. And the one time that I need her, she totally gaslights me.

 

Dr. Marjorie Roberts

She was like, well, I can prescribe something to make you feel better. I'm like, I'm telling you, this is not stress. This is not stress. I know what stress feels like. I was a single parent. This is not stress. I went to school for nine straight years. This is not stressed. What's going on. No help from her, no help. I was like, okay, I don't know what to do at this point. So I'm talking to my daughter. My daughter is my very best friend in the world. I'm having the conversations with her about my death because that's how sick I was. And I didn't know. And this is my only child, my only 40 year old daughter that we best friend. I'm having this conversation with her about how to go on without me,

 

Sarah Kirwan

It's different when you're planning and you're aging and you understand that's part of the natural progression of life, but to all of a sudden be having those conversations when those are not expected to happen, is incredible. What you just shared about your provider experience is to me, that is a very similar story that we hear often from people with disabilities. I was on a call this morning, a conference, about disability statistics. They were sharing about how many people feel with disabilities, feel unseen and unheard by their provider. Do you think that you'd be in a different place now today, had your providers actually provided you with the healthcare that you needed?

 

Dr. Marjorie Roberts

Yes. Most definitely. There were nodules at that time that I had all that going on with my first position, there were things going on top of my lungs that I had no idea about. There were nodules growing and forming in my lungs from the COVID-19. There was spots on my liver from the COVID-19. I first went to the emergency room or April 4th. It wasn't until around June 8th that I was able to get that second provider to believe me and help me. It was after that I, when she went through all of those three different visits that I went to the emergency room and did her own set of blood work. She was like, I, I can tell COVID-19 is in your body. COVID-19 has done some damage because my numbers were all over the place from the blood work. Everything was totally out of whack.

 

Dr. Marjorie Roberts

What she saw from three different times that I had been to the emergency room, but all those other visits that she, I had to see a lung specialist right away, because she knew that something was going on in my body. Once I got to the notes. That's when she was like, well, those nodules in your lungs. If my primary doctor back in April had not gas lit me and tried her best to get me some help, maybe that would have got caught earlier in June, because the time I got there, the nodules was in. They're still there. They're still there. They're monitoring those nodules. They're monitoring those spots on my liver. They did do a biopsy to make sure that they are not cancerous, but it's still there. Knowing that they're still there, it's like, why didn't you believe me back in April when I told you something was wrong with me and being my primary physician, like I said, she knew I wasn't the person that ran to her for everything.

 

Dr. Marjorie Roberts

It was my regular physicals, my mammograms, my OB GYN appointments, that thing. The only issue that I had going into COVID was high blood pressure, but that was just one pill that I was taking every day. Nothing else. Now fast forward to now present blood pressure is in such good control by my new doctor. I have a, I, I have a problem with the way that I was treated, but it also made me fight. It made be fight. It made, it made me stronger mentally because I knew what was happening to me was happening to a lot of other people that didn't have the means, that could not speak for themselves. Also in the middle of it I lost one of my very best friends I ever had in my life to COVID-19. I knew I had to fight. I had to fight for people who have no voice.

 

Dr. Marjorie Roberts

I have to fight for people who are hooked up to ventilators. I have to fight for people who their bodies would never be the same again. So this is where we are now. And, to see COVID-19 as being a disability is what I'm fighting for the world to see. We can't go back to the jobs. First of all, it completely strips away your stamina, it takes away your energy level. I can't even walk less than a block without getting winded. I still, sometimes, I feel myself getting headaches, I get a little nervous. I have to do my little breathing exercise because I don't know is COVID coming back. I don't know. I don't know is COVID gonna rear its ugly head.

 

Sarah Kirwan

Does anyone know, like, is, are those symptoms going to go away that you have now? Like for my multiple sclerosis, it's basically the damage that's done before I started on the medication, right? The disease modifying therapy, the damage that's done up to that point is already done. Like you can't go back really and reverse that you'll have some self-healing, but for the most part, that damage is going to be there. You start from that kind of baseline, I guess, to see if there's new damage moving forward, then it becomes an issue. Are they looking at, are they looking at that at all?

 

Dr. Marjorie Roberts

In some cases they are because there are now a lot of long hauler, lot of clinics that are, trying to address this issue. Now, since we have, a new president in place, Kobe has been pushed to the forefront because before COVID was getting, were getting mocked, were getting downplayed with the, we get laughed at which we're still getting a lot of those things. But now it's real. It's real to some people. Well, I'll put it that way. It's real to some people because you have everybody across the board has been affected corporate America, restaurant, everybody, all entire workforce has been challenged by COVID-19. Now, we would get pushed to the back of the bus and nobody was listening. Now we get pushed forward. Now the, now they're beginning to listen because it's affecting them. It's affecting their families. It's affecting members of it's affecting the white house where before, when it was running rampant through the Rose garden, it was a haha.

 

Dr. Marjorie Roberts

Now those people are now becoming they're experiencing what we're experiencing. COVID-19 is not going away. It doesn't, it doesn't just disappear out of your body. It’s still there.

 

Sarah Kirwan

Yes. I, I have so much to say, as you were talking, there were so many thoughts that flashed into my head from the past year, the different things that have been shared, the misinformation that we've had, it's just been just kind of the perfect storm for all of this. You are fighting for COVID-19 to be seen as a disability, right? To be federally stated that it's recognized by law, that it is a disability. Let's go back to the long COVID. I was reading an article that was published by cnn.com titled long COVID still puzzles doctors, but treatment is possible. It also States that the severity of symptoms upon contracting the virus doesn't denote who will experience long COVID. Some of the symptoms of long COVID are severe fatigue, headaches, and brain fog. You talk about incorporating or having the government recognized COVID-19 as a disability, have you seen any work in that space? Have you seen anyone that's talking about that from a leadership,

 

Dr. Marjorie Roberts

From a leadership standpoint, like Mount Sinai in New York was like one of the first hospitals to set up their COVID-19 cleaning. They set the precedents where everybody, if Mount Sinai saw a need to take this thing further, then that's the red flags for me, that is the red flag for me, because that is a world renowned hospital. Like I said, they were one of the first to say, okay, we got it. We gotta do something about this because we are getting people that are not getting better. They are not getting better. And COVID-19 destroys your organs. It destroys your heart. It destroys distortion, never extrusion lungs. It just shuts everything down. If everything is shutting down, some people are having to go on dialysis because of COVID-19. Some people need liver transplants because of COVID-19. Once you face, you come up with something like that and you're removed from the workforce.

 

Dr. Marjorie Roberts

Somebody is going to have to help us. So we are being heard. We just got to continue to scream out. That's why I encourage everybody that I talk to with COVID-19. I tell them to not suffer in silence, speak up, join these groups, get out there, be heard your story. Don't treat. COVID-19 like a dirty little family secret.

 

Sarah Kirwan

I'm so excited you just said that. That's my favorite line from one, we talked the first time and I feel like for people with disabilities, invisible or non-apparent, it is a dirty little secret, oftentimes that you don't share with people because you have that choice to either identify or not identify with the disability community, right in your group COVID survivors for change. That's actually how I, we got connected when I'm so thankful for Chris, he has been, and I'll just say for our listeners, it's Chris coacher. He is the executive director of COVID survivors for change. What a wonderful man, what a wonderful human being. I reached out to him months ago with this idea, because I started thinking about all of these similarities that there are between COVID long haulers and people like me with neurological diseases and disorders. There's all these shared experiences, which got me to thinking, well, what's going to happen.

 

Sarah Kirwan

When people go back to work, what's going to happen. When there are reasonable accommodations that will be needed. Are, is this going to be covered under federal law? As part of the ADA, will these people COVID long haulers, will they be able to get reasonable accommodations, things like that. Has he talked to the group or talked with your group about any policies that you're looking into or the group is looking into regarding COVID-19 as a disability?

 

Dr. Marjorie Roberts

Chris is on the front line. I mean, he is just, there are no words to describe the level of love that I feel for this man. He cares, he believes us and he is sounding the alarm. He is using every Avenue and every door to get us hurt. He is doing everything. The groups and the way that it's set up, everything that you eat to function and get through this thing that this group has provided. They, they, we meet every Thursday night. We have a zoom call is open to, they have therapists on every call. There is a minister on every call, everything. They, they go through everything. They try to have training classes to teach you how to talk to media. They have training classes to train you on just the proper way to use Twitter and to use all of those media outlets that you can to be heard.

 

Sarah Kirwan

That's fantastic.

 

Dr. Marjorie Roberts

Yes, he is. He is. And we are let me say like a couple of months ago we had, it's just so many things that Chris is doing and he is so quiet and so humble. Sometimes he'll just have pop-ups needed. He'll just say, you guys feel like talking, just come on and let's talk about anything and everything. This, there is nothing off limits within this group. Everything, every their resources, they have resources and there are people to help you in whatever you may need help in. When I first saw that group, I was like, Oh, I, I want to be a part of that. I want to be a part of that because all the groups that align myself with their own admission and they are serious about getting heard, they're serious about getting us help. And it's just phenomenal.

 

Dr. Marjorie Roberts

I know everything that this group stands for. Like I say, Chris is just he's, is truly a gift to us. He is a gift to us because he gets us. He understands us and surrounds us with people like himself to understand us. They don't judge, they don't church. That group is growing and we need, and we cry together. We laugh together. We pray together. You can scream. You can shout if you want to come on a zoom call. You're so tired that you just wouldn't sit there and sleep, but listen, because you need to compensate because that's, what's going on. Not the people at being left alone, people that are being married for 30 and 40 and 50 years, their spouses are dying and they're left alone. This groups, these groups, they give them hope. We come together and we support one another. And I have made friends.

 

Dr. Marjorie Roberts

We have formed bonds with people outside of the groups, because everybody, we all know we are on a mission. We're on a mission to be heard. And we're going COVID-19 is the discipline. This is the bottom line. Because like I say, when you're, if you mentally, if you can't say you can't work physically, if you're in pain or you don't know what's going to hurt today, you're, they hurt this hurt. That hurt. You got a headache. Now your heart is a little out of whack. You know, your blood pressure can drop. Everything is changed for you. They're going to have to make provisions for this new batch of people. That's coming in a common with a quickness.

 

Sarah Kirwan

It's not going away and it's already come with a quickness, right? I mean, it's, it has ravaged our country in the world, but I agree with you. I just want to repeat what you said. COVID-19 is a disability. I will be so interested to hear the policy work around that, because that will be about how long does the fatigue last? Is it going to be a short-term disability or long-term disability at this point? It's hard. How do ? We have no idea? Will it be long-term like something like MS, will it be short term that you have these symptoms? And then, two or three years, they go away or six to nine months, they go away, who knows? So I think there are so many unknown factors, but I, I definitely agree that people who are living with COVID long COVID are disabled. If we look at disability from the general definition of physical or mental impairment that can interfere with your daily activities and recognized by a law.

 

Sarah Kirwan

Well, this obviously interferes your days have changed. You said you could walk a block and then you're winded. Tell us about the work that you're doing to support COVID survivors and long hauler.

 

Dr. Marjorie Roberts

I have become an advocate. I do not. I speak up, I have started a life coaching business, geared towards people who have had COVID-19 or people who have not had COVID-19 for half of the fear of COVID 19. That is what I, because I know what it does to me. I know what had done to my life. I know that my life is forever changed, and I know that I have, by grace, I have found a way to fight that mentally I'm in a really good place. What I do, put on my cheerleader outfit and I go for it and I cheer people on. I call people, I engage with people. I talk to, people are read people's posts are read between the lines. If I don't like what I see, I reach out to that person and we talk about it. When I'm in these groups, I see people that are hurting people that are really hurting.

 

Dr. Marjorie Roberts

I make sure that I write that name down and I reach out. I try to form a group with them, a group within a group, because COVID-19 is really dark and lonely and it was dark and lonely for me. I was going through the early phases of COVID-19, I was in the house by myself because my husband had to work. Our daughter had to work. I was at home and I had to find a way to function. I had to find a way to bring some sunlight back into my life. I had to find somebody to talk to, I have a therapist. I had that therapist, but I couldn't cut to talk to her every day. What I did was I started researching. I started looking for people like myself, and I found the groups. I started to find, found a long haul. The Kobe group that was started by Amy Watson, because she was a long hauler.

 

Dr. Marjorie Roberts

For 300 plus days, she had a fever. Over a hundred is a disability. So, I'm in a lot of groups in some of the groups I'm in, like we just bond. We just stick together. I'm in another group called the coronavirus four room curl. This young lady, she listens to our stories. She writes our stories. She talks to us and writes our stories and put some out for the world to see she puts it out there for the world to see, this is what she does. I'm out there 365 scoping, everything that I can, I'm doing everything I can mentally to support people that have gone through what I have going through. And I can't save everybody. Every day I set out, I said, if I could save one person today, then I sleep good at night. Yes. COVID-19 like I say, I don't know how they're going to do it, or where are they going to do it, but they're gonna do it.

 

Dr. Marjorie Roberts

They're going to have to do it because somebody has to help with it. It's no way around it. It's not going away. The numbers of them are going to continue to rise. Now, no, we have the vaccine on the scene, but you still have people who think COVID-19 is a hoax. You still have people who want to do what they want to do. As long as they want to party and do what they want to do, COVID-19 is going to show up and keep affecting people. That means more people are going to be disabled. More people are not going to be able to go back to work. People that own businesses now have been affected. They can't work. If they can't open their business, their employees can't work.

 

Sarah Kirwan

All of the nonprofits that exist for like cancer, cerebral palsy, spinal cord injury. I mean, multiple sclerosis, all of these different foundations and nonprofits that exist for research and funding and support for individuals who are living with that disease or disability. I wonder if, or I should say when there will be an organization that arises to address this gap in support for this community,

 

Dr. Marjorie Roberts

They are they're up and coming for a whole, almost the whole duration of COVID-19. Again, it was being treated like a dirty little family secret by the government. It was, it was a hoax. It's going to go away, just take a Tylenol and you'll be all right now, there's people out there, but until the foot got taken off, so even doctor thought he couldn't even speak freely.

 

Sarah Kirwan

I feel, and again, correct me if I'm wrong. The COVID community has been grieving in silence up until the point where President Biden, was it the night before his inauguration where he had the Memorial?

 

Dr. Marjorie Roberts

Yes, he did. Yes, yes. It brought us all to tears. Very night that very night, Chris called the meeting for all of us to come if we needed to, because he knew that was an emotional day for us. He knew that we needed him. Just like that on clockwork, the email came through. If you guys want to talk, if you come on. We came together and we cry and we celebrate it finally. It was like, Oh my God, thank you. Finally, finally got that. We, yes. That was it. That, that began our night.

 

Sarah Kirwan

Yes, yes, exactly. Yes. For me sitting there for me not having the experience that you've gone through, that all of these members of the COVID-19 community of survivors have gone through, for me, it was this release of emotion that I didn't almost like I could breathe for the first time and start a grieving process. Like something had been taken off of my back. And I just cried for two days. I mean, it really cried for two days that day, the day before the inauguration and the inauguration, because I felt for the community, the COVID- 19 community, I felt like for the first time now you're heard now you're seeing now your voices are going to be uplifted.

 

Dr. Marjorie Roberts

Thank you. Thank you. Yes. Thank you. Because it is people like yourself, Sarah, that believe us, we don't take that for granted and we don't take it lightly because thank you for believing us, because that means the world to us, because it was so many people who did not believe us and gasoline, us and Marcus said were seeking attention and that were lazy and we didn't want to work. We would just claim and have this thing. When, when people like you support us and believe us, it gives us hope. It pours into us spirits. It gives it, lets us know that, Hey, they're not lying. They're, you know, everybody's not lying. You know, over 400,000 people have died. That's that's not a hoax. That's not, that's not a hoax. So, again, I, I thank you for your support. I just want to say to everybody, that's listening, if you or a family member has contacted, COVID-19, if you have any questions or concerns about COVID-19, please reach out.

 

Dr. Marjorie Roberts

There are groups out there you don't have to be, had to have COVID to be concerned about. COVID you're more than welcome to join our groups and, come be educated, come learn, survive. Of course long-haul COVID fighters, the Corona virus for mass with us. That's a, that's a movement that's begun. You don't have to do anything but post the picture of you wearing a mask, but we are growing in numbers. We are growing, we have members, and it's just so many. And of course COVID survivors the change. We are going to bring a change to this thing. You can find me on all social media platforms. There's no question is a stupid question. If I don't know the answer, then I know to go to people who do, because COVID-19, again, it's not a hope it's not going away and I don't want anybody to suffer in silence.

 

Dr. Marjorie Roberts

Speak up, be heard, again, reach out. There is, there is hope there at the end of the tunnel, we can see it now. We still have a ways to go, but we are not far away from as were.

 

Sarah Kirwan

No, we're not. I always, well, I told you this, when we first got on the phone, you're like this ray of sunshine, you're so positive about, the change and empowered and moving forward. I just love that about you because it's contagious and any way that I can help support this community. I also belong to the Facebook group. COVID survivors for change, just so I can hear the stories. That's one thing that we talk about in the disability community. We should be leading that way in uplifting these voices and sharing these experiences and these stories. Really what I hope that this episode accomplishes is that people understand and connect the dots between COVID-19 and disability that people will start to understand. Like you said, given the messaging around the pandemic for the last year, there are a lot of people who don't believe the data don't believe the science or the scientists.

 

Sarah Kirwan

We are not those people for the people who do believe the data do believe the scientists they can. They can recognize this as a disability and uplift voices around that. I want to see it embraced the COVID-19 community embraced by the disability community. We have experiences. We have, very similar experiences when you and I spoke. You talked about being winded, just walking around your house or having fatigue that you didn't want to get out of bed or get off the couch. That's something that I experienced that my friends with MS and other neurological diseases experience. Instead of seeing where there are those differences, I am truly hopeful that we can see where there are those shared experiences and we can embrace one another and bring our communities together. Right. To understand that. That's another thing that I'm trying to work on with the podcast. I'm work that I'm doing is to bring a more collaborative spirit into the disability community and understanding that if we align our voices and our messaging and we collaborate with one another, then we will make real change in this country.

 

Dr. Marjorie Roberts

Yes, most definitely.

 

Sarah Kirwan

Yeah. If we continue to fight people and fight one another and oppression Olympics of this disability or disease versus that one, we won't get anywhere. We've been told that by lawmakers repeatedly. So that's my hope. I'm just really thankful that you will a, I'm thankful for just your energy and spirit and coming on here to have the conversation with me, I believe I think that those three words are so important for us to hear. I have an inner ear disease. That's very rare that went undiagnosed or misdiagnosed for about nine years. When I finally got to a provider that said, she put her hand on my knee and she said, I believe you. It was also at that same time where I just felt this relief of, Oh my gosh, I'm finally believed when you're not believed. You're constantly fighting. You're already in survival mode with your health mentally and physically.

 

Sarah Kirwan

Now you've got to fight for people to even believe what you're trying to tell them. This was done on such a much larger scale than most of us have experienced.

 

Dr. Marjorie Roberts

There's a letter that's going up. We just signed this letter this week. That's going up, that's going up to Joe Biden. We send it up. We'd go off for the top gun. So, yes. When I read the matter, I had such a smile on my face. When I went back to the group to share with the group that I had signed the letter, that's what I said. I signed that letter with a big smile on my face because it's going to get in the right hands. Because like I say, Christmas, no joke. He's not going to just, Atlantic with any nonsense or any foolishness. That letter is going to make it's going to make it. That's just the first of many, a note, there are gonna be many more to come because we are going to be heard. And I'm just waiting for that day.

 

Dr. Marjorie Roberts

I'm just waiting for that day when President Biden’s people says to Chris’ people have your people call my people. Haha.

 

Sarah Kirwan

I love your excitement. After everything you’ve gone through you are still a ray of sunshine.

 

Dr. Marjorie Roberts

Because it’s going to work Sarah.

 

Sarah Kirwan

I thank you for a seeing the connection between disability and COVID-19 and having the strength to speak about it, speak out about it and to share your experience. And it's not easy. What you're doing in the work that you're doing to support the members in this community is just really outstanding. I'm grateful that you took the time today to just have this conversation with me. I'm excited for people to start hearing a different thought process about COVID and a different conversation about COVID. And I'm really excited for that.

 

Dr. Marjorie Roberts

No, we're not going to be pushed to the back anymore. We're not standing for that. You know, we're going to come together. We're going to ally a disability is a disability. There's no one. There’s no two. There’s no three. We are all ones. We are all one.

 

Sarah Kirwan

We are all one. The best example of that is from Crip camp, which was, decades ago. That collaborative spirit hasn't gone away, but it's changing. I feel like we need to change it a little faster.

 

Dr. Marjorie Roberts

Yeah, that's right. Yeah.

 

Sarah Kirwan

Let's like, let's step on the gas.

 

Dr. Marjorie Roberts

They got you and me in the car now. Now we behind the wheel. We're going to put a foot on the gas and we don't pick up. Who else going to go and go try back. Who don't want to go? We going to take this thing all the way to Washington DC.

 

Sarah Kirwan

Yes. I feel like so excited. I want to go outside and like run in the streets with signs. We're going to Washington. Yeah. I love it. I love it.

 

Sarah Kirwan

All right. Well, thank you.

 

Dr. Marjorie Roberts

Thank you so much.

 

Sarah Kirwan

Once again, to our listeners, thank you for spending your time with us and joining the Incluse This! conversation and movement. Incluse This! is brought to you by eye level communications, LLC. Eye Level is a California based woman and disability owned small business committed to having critical conversations at eye level that are necessary to move disability to the forefront of the greater diversity. If you'd like to learn more about the work we're doing, please visit the website at www.eyelevel.works. You can also email me directly with any podcast episode ideas or questions and comments at Sarah at eye-level dot works.

Remember to put your disability lens on when you look at the world and tune in next week for another stimulating conversation on includes this, the podcast, that's really a movement take care and be well.

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