My Mother Is A Black Woman Radical: An Interview With Chronic Kidney Disease Survivor and Advocate, Aretha Swift
Advocate and chronic kidney disease survivor, Aretha Swift. Photo courtesy of Aretha Swift.
By Jaimee A. Swift
For Mother’s Day, Black Women Radicals’ Executive Director, Jaimee Swift, interviews her mother, Aretha Swift, an advocate and chronic kidney disease survivor on life, faith, and resilience.
When thinking of what the term, “Black Woman Radical” means and who and what embodies the definition, several images may come to mind. Some may imagine Dr. Angela Y. Davis and her magnamious afro or thoughts of Assata Shakur escaping from the Clinton Correctional Facility for Women and gaining political asylum in Cuba. Some may think of other activists such as Marielle Franco, Ella Baker, Marsha P. Johnson, and Wangari Maathai as Black Women Radicals––and they most certainly and definitely were and are. However, when I think of what a Black Woman Radical means, I think of the names of the women I mentioned above but I also think of my mother.
Aretha Swift, my mother, is my first and true example of what a Black Woman Radical is and means. It is because of her radical love of God, herself, her children, and others which is why I am here today. It is her grit, her love, her care, her kindness, her resilience, her sacrifices, her will to survive, and more that makes her a radical, Black woman and therefore, the fiercest woman I know.
At 60-years old, my mother has lived and continues to live many lives. As a child, I used to view my mother through the lens of just being my mother. When I became a woman, I realized my mother is more than just my mother: she has done and seen so many things; has loved hard; lost so much; fought to regain so much of what had been taken from her; prayed prayers of the righteous even though things around her were not always righteous; cried many rivers, lakes, and oceans; survived judging eyes and unwanted scrutiny; and had to find her way and her voice being Black and a woman––a Black woman––in America. It is with this new insight that I look at my mother as the woman she is, as Aretha––a Black woman who has dreams, who has fears, who has faith, who has traumas, who has successes, and who was a Black woman finding herself before she had me, during my childhood, and beyond my adolescence and adulthood. I see her as I hope that my future children and even others who are not kin to me see me––as human, as tender, as someone who is trying to be whole.
Aretha Swift was born in Marva, Arkansas in 1960 as one of five children to a strong, no-nonsense-having, God-fearing single-mother, Barbara Sawyer, my grandmother. Growing up in the country, my mom would tell me that she didn’t even realize she and her family were poor. My grandmother––who not only raised five children by herself but also raised herself and her five siblings––wanted her children to have a different life than what she had, as she had worked endlessly sharecropping on a farm and land owned by white people. So, they moved from Arkansas to St. Louis, Missouri and later to Norristown, Pennsylvania. It was here where my mother journeyed to find herself, despite new transitions, familial heartache, and burgeoning questions of who she was and where she belonged. From later moving to Houston, Texas; landing a high profile job; getting married and having me; then moving back to Pennsylvania and having my brother; landing another high profile job working in revitalization and community-building in Norristown; to having my sister; surviving a defective and destructive marriage; being a balm for her siblings, her family, her community, and her church family; later being diagnosed with renal kidney in 2010, and then getting a kidney transplant in 2016, just for the kidney transplant to fail in a month; and to keep strong in her faith and have a second kidney transplant in 2019, needless to say, my mother has survived and persevered through so much.
And that is only a small glimpse into her true journey of being the survivor, advocate, and warrior-woman that she is.
For this interview, I spoke with Aretha Swift on various subjects including life and resilience; being a survivor of renal kidney failure; her experiences of racism and prejudice in the medical system; faith and patriarchy; and so much more. For Mother’s Day, I hope this conversation between my mother and myself inspires you to connect and reconnect with your mothers, other-mothers, aunties, guardians and biological, chosen, and ancestral family members and even fictive kin.
Jaimee Swift (JS): What is giving you joy these days? What gives you joy?
Aretha Swift (AS): “Well, not to sound what’s the word––religious––but it really is the joy of the Lord. More importantly, it is the joy of having my three children. Most people will say, ‘Awww, that’s so corny!’ But no, the joy of the Lord is my strength and I am joyful because I am alive! I am alive, I am healthy, and I am well. I get to see my children. I get to see my mom and my siblings and all those in my life. So, I am joyous, every morning I wake up! I am joyous to be alive.”
JS: What does resilience mean to you and what does that look like in your life?
AS: “Resiliency means to be able to endure and stand in the midst of whatever is going on in your life. That could be any kind of adversity––health issues, marital issues, children or just your own insecurities. I think that is what it means to be resilient. And what that looks like in my life now? It looks mighty good. From where I was to where I am now, it took a lot of resiliency to be able to stand through all the tests and the trials.”
“Resiliency means to be able to endure and stand in the midst of whatever is going on in your life.”
JS: There are so many things going on with COVID-19 and amongst other things. However, in terms of the Black community and COVID-19, we are seeing that Black people have been losing their lives disproportionately to the virus because it has been exacerbated by white supremacy and other structural issues. You have seen throughout your time going back and forth to the hospitals how much health inequities impact the Black community. From your experience with going through renal kidney failure, do you think there are racial disparities and concerns when it comes to health inequities in the Black community? How have you seen this in your experience?
AS: “First of all, when I entered into the medical field years ago, I didn’t understand the impact in terms of race or anything like that because at the time, I was still trying to come to the realization that I had been diagnosed with something. Trying to come to terms with that was more of my focus than anything. I think within the last two years in particular and recently having a kidney transplant, when I walk into the medical building I have to go to see the medical specialist––and this was even prior to COVID-19––I started looking at all the people and all the Black people and how many of us were sick or were in the system. That disturbed me then. So, to be in the midst of this virus and for the doctors to say that those who are predisposed and those who have pre-existing conditions are mostly in the African-American community are the ones that are dying, that really troubles me. It troubles me because there are inequities in the service we get––it’s like the haves and the have nots. In my particular situation, I have been fortunate and I have been blessed to have had a pretty good job and have the benefits that I have now but I know that is what is going on. I talk to people who won’t go to the doctor for various reasons––mainly because it is insurance or fear, or having been diagnosed or don’t want to be diagnosed, or knowing that they have something but they don’t want to enter in the system because of fear of dying or not even getting the kind of care they should get. I don’t like what is going on in terms of people making you feel as if you are carrying some type of plague. Also, our people dying has really been on my heart more than even thinking about myself because it is so close to home now––it is people that I know who are dying. There are a lot of racial disparities and it is all coming out now––from The White House to our house. All of this stuff is really reflective of where the world is today.”
JS: Speaking of racial inequity and discrimination, do you think you could speak to any experiences of where you felt racism, discrimination, and lack of proper care in the medical system?
AS: “Of course. I didn't really get into the system until I went on dialysis in 2010. That was devastating in itself. I noticed it when I entered into the system in terms of getting on the kidney transplant list. I think people already have these stereotypical preconceived notions of what to expect from Black people, in particular in terms of their character and how we react and how we respond. For me, I noticed that when I went in with the mindset that I want to know what you are talking about and what you are prescribing for me––in other words, I went in proactive because I realized I had to advocate for myself. I had a major, major encounter with that concerning the first kidney, which rejected after waiting over five years for it. It started to reject that first month in April 2016. I ended up being back on dialysis. I noticed that after the transplant, I started feeling like things weren’t going right in terms of how the doctors were responding to me. There were different teams coming into my room. By then, they knew the kind of person I was because they would approach me and say, ‘Oh, Ms. Swift, she is very intelligent’ and she is this and that––no, let's forget about intelligence. What is going on with my body and with this organ that has been transplanted in my body? I didn’t get the answers that I wanted. That led to––and as you know––us having to have a meeting with the doctors to let them know that you are not going to disregard me and put me back on dialysis without giving me explanations as to what is going on. Then I had to find out that the kidney itself rejected online––on my own personal patient portal. It is things like that which can really impact you if you don’t have people in your corner and I know there are so many of us who don’t have people in our corners. We do not have advocates. It is like we are going for slaughter––we are animals going into slaughter. There are people prescribing things for us and they are just telling us stuff. Some of us are not asking questions. I am not going to have that. I am not going to let you handle me like that. Ever. So I have become very proactive in my care.”
“You want to be handled like a human being.”
“If need be, anyone else that I am involved with who is in the system or who has been diagnosed, I would want to encourage them to become advocates for themselves as well. Ask questions––we have every right to ask these doctors questions. When those doctors would come into my room and wouldn’t speak and think they were going to put their hands on me I was like, ‘Hold up––hello, what is your name? You are not going to touch me and not acknowledge me. Don’t think I am just any ole’ patient.’ I think what happened for me, in particular, they knew that I wasn’t the one, in terms of trying to put something over me as if I wasn’t going to say anything. Plus, I have my children to back me up. You in particular know. I had you all to support me. Because of who you are, I think the advocacy was stronger and more stirred than I was. Nevertheless, we got our point across. Now that I am back in the system again with this second transplant, it is not the same as the first time but you still have to watch because little things creep up. If you are not careful, that cycle will begin again because it is like you are a piece of merchandise or something that is being handled and that is not how you want to be handled. You want to be handled like a human being. Black, white, yellow, or green––it doesn’t matter. I want that same kind of treatment.”
JS: I just remember being so irate when that one doctor came in and wrote on your pillow. You were lying in bed and instead of using his notebook, he wrote on your pillow. It was a white doctor, too. It was the arrogance and the inconsideration of treating people like numbers. I saw that with you. And then when I would walk into the dialysis center, I would see so many Black folk. I began to wonder, how many of us go through this? We know that throughout history, we have been experimented on like with the Tuskegee Experiments and doctors have performed forced sterilizations on Black people like Fannie Lou Hamer. There are histories of this. I felt like I had to get loud up in the hospitals sometimes for you to even get the attention you deserved.”
AS: “Yes, this is so true.”
JS: How have Black women in your life inspired you?
AS: “Wow, a whole lot. I know it sounds cliche but I would have to start with my mom. I look at things now––not just my upbringing but also the morals and values that were not only put in me but my siblings, the five us. Mom really made sure we knew the value of hard work and survival. I really didn’t understand that until years later and I understand it even more now listening to her and as I look back over my life and look back at the years of me growing up. My mom has played a really big role in my life in terms of how I raised y’all and in the church. She has played a role in my life in being a self-sufficient woman. I inherited the strength of who she is. I am very glad that my mom taught me to be an independent Black woman. Very thankful. I hope that is not only instilled in me but in my children––from my son to my two girls, I really see that. I thank God for that. Outside of a relationship with Jesus Christ, your strength and who you are and your core values of who you are which include manners, respect, love, empathy, compassion––it is like the fruits of the Spirit––that takes you a long way. It does cause you a lot of confusion with people because people can’t handle you for being who you are but I am grateful for the woman I have become.”
“I couldn’t always say that. I am really grateful now in my life for the woman that I have become. I am grateful for my mom. I can also say that my sisters have had an influence on me as well as my aunts. My aunts on both sides of my family. Then there are celebrities who have been inspirations like Maya Angelou, Michelle Obama, Oprah, and many others who I can look up to and say, ‘Wow, that is a strong Black woman.’ And you know what? I put myself in that category. I put myself in that category not because of wanting to be a celebrity but because I see the strengths in them. There are so many Black women who I see so much strength in. And I see that in you and I see that in my girls. And I even see that in my son. That is what is what is going to carry you, outside of your relationship with Jesus Christ. That is going to sustain you and carry you.”
Aretha Swift, my mother, with her mother, my grandmother, Barbara Sawyer at my mother’s 60 Birthday celebration. January 2020. Photo Credit: Byron Purnell of B’Captured Productions.
JS: I am glad you said that you don’t have to be a celebrity to be a Black Woman Radical because sometimes we think of––and they are amazing, too––but Angela Davis, Assata Shakur, Elaine Brown, Ericka Huggins, and Marielle Franco but it is also the everyday Black women who are the radicals, you know what I mean? It our mothers, our othermothers, it is our sisters, our siblings, our niblings, and non-binary people who are doing the work everyday. They may not get the accolades all the time or are famous or well-known but they are the radicals who are doing the work as well. When I think of radicalism, I think of so many of the Black women in my life––you, grandmom, and even the women at our church.”
AS: “Right! Most definitely!”
JS: With that, what does a Black Woman Radical mean to you?
AS: “[Laughs] I know that you said that I am. Honestly, I never really looked at myself like that. When I think back over my life from a little girl growing up in Arkansas and in Steele, Missouri, where my dad lived, I think about during the sixties when all the things were going on with the Civil Rights Movement and all the wickedness of racism and hate, I think about that a lot. I also just remember situations and incidences where I can see how as a Black woman that propelled me to see that I really had to be better––above better––in order for me to stand with the others, so to speak. I didn’t understand that as a youngster but when I was growing up and seeing my mom and all that stuff––I didn’t even consider all that. I heard stuff. I saw her confronting white men who said things to her when they would come to the house but that stuff never really impacted me until I became a young adult and more so now than anything. I consider myself in the radical sense that I am not with the norm. I never really even was with the norm as a child because I sat back, watched things, and was like, ‘Hmm, that is how you do this but I don’t agree with it.’ Whether it was in the church setting, or on the job, whether it has been in my home or out in the street or in any kind of environment, I have always felt that I had to be radical in my approach to be able to get people to respect me for who I am. In the workplace and having the position that I had, it was on. Now, I see the radical side of myself and I am proud of it. I am proud to be a Black woman. I love who I am now. I couldn’t always say that but I can say it now because at the time it didn’t have to deal with Blackness or color but it was what I was dealing with inside of me. But now, I am Black and I am proud and nothing is going to change that. If God didn’t want me to be who I am, He wouldn’t have created me.”
JS: I know faith is important to you as it is to me. However, how have you navigated dealing with patriarchy and machismo in circles of faith as a Black woman? And reconciling this with your faith?
AS: “I think with me with the church it goes back again to me being radical in my thinking. I was raised in the church and I never prayed for or desired a position. I never wanted a title. I never wanted to be in a ministry or in ministry to that extent. I just wanted to have a true and honest relationship with this great, big God that as a 10-year old child, I got on a roof to try to communicate with by throwing a letter up in the air. That is all I wanted to do but everyone had their own interpretations and views of how they should present God to people. And I didn’t like it. I didn’t like it as a child, I didn’t like it as a teenager, I didn’t like it as a young adult, and I don’t like it now. I don’t like it now because I think it all became prideful with people and about themselves. It became about titles. My role in the church and how I approach it is I am going into the church to fellowship with my brothers and sisters but I am also going in to hear the Word of God. And just like your grandmommy says, ‘You eat the meat and spit the bones’ because I have to know my relationship with God and what the Word of God says. So, when I go to church and am around church folk and I love them dearly but it is not about being recognized as somebody who holds a position but for me it is just about being a woman of God. That to me is believing this word and living it but not being religious.”
“I am proud to be a Black woman. I love who I am now.”
“I don’t have to be religious. I don’t want to look like Sister Suzy or Brother so-and-so. I just want to be Aretha and enjoy serving my great, big God and believing what His word says about my life and the life of my children, my family, and the people. I think that is why I have such freedom in my life and have had such freedom when I am worshipping because I don’t require anything. All I want to do is serve God, love man, do what I am supposed to do, and enjoy my life. I don’t feel bound in the church environment. I see people who are and it is very sad because I don’t believe that is the life God wants us to live. I respect men and women of God who are called to the five-fold ministry but I choose to believe what I hear. I just don’t jump on board with everything. I think that is why I have liberty and freedom when I am serving God and even when I was seeking God as a little girl and writing him letters when I was younger. He knows me better than anybody.”
JS: Yes. At times, I think it is hard to get to the place of freedom in the church because people get caught up in what other people are doing and what other people are thinking or how a woman should behave or what a woman is wearing or doing. We have talked extensively about how women in and out of the church can and are being policed because of patriarchal norms. There comes a point where you have to take a stand and be like, ‘No. This is not it. I am not going to live for other people.’ I had to do that.
AS: “Yes. I think that when I left and moved to Texas, I initially wasn’t even attached to a church because I felt forced to have a relationship with a God that I didn’t even know. I was still trying to figure it out. Once I moved to Texas that was when I began to see things differently. I wanted to know, ‘Who is this God they are serving?’ Because there was such freedom there with how they approached things. But don’t get me wrong––situations in terms of people with titles were there but it wasn’t the same in terms of people looking at how I was dressing or if I had red lipstick on or not because that was a big thing, too. No one was concerned about how high my dress was or how low it was or if I wore a hat or not or if I wore the biggest hat, it wasn’t like that. That was when I began the journey of realizing that I was right on the inside all along––that God accepts me for who I am. I don’t have to be like anyone else in a church setting. If you find yourself in that position, you will never ever get to experience the freedom and the joy of being a man or woman of God because you are going to be bound trying to keep up with everyone else. I refuse to live that type of life and confess my salvation and confess being a woman of God. I won’t live like that.”
JS: It takes a person to say to themselves and to others, ‘I am going to do this this way.’
AS: “But the flip side to that is that you have some people who are so religious and so rigid in their walk with the Lord that they look at you differently and make comments like, ‘Oh, look at you’ or feel some kind of way because you are free in your walk with the Lord. And I get that reaction from people sometimes but guess what? It rolls right off of me because I know who I am. When you are not sure or if you are still questioning who you are, then people like that will approach you, infer, and say something to get you to think otherwise but I am not swayed by that because you are not going to tell me how I should wear my dress. You are just not going to do that. You do not take care of me. You didn’t take care of my children when I was raising y’all. You do not take care of anything concerning Aretha, so you can say or think whatever you want. First of all, your mind is on the wrong thing. You shouldn’t be concerned about how high my dress is or if I am wearing a sleeveless top or not.”
JS: I even think about this in the political sense, in terms of how Black women and other marginalized communities within the Black community had to break out and say, ‘No, this is who I am. We are here. This is how we are going to be.’ I think a lot of times when people think of the term ‘radical’ they equate it with revolutions like the Cuban Revolution and that is a part of the radical process and the continuum of it. I also think there is very much so a personal, spiritual, and psychic level of being radical, where you have to go at the root of yourself to find yourself and to choose who you are and peel back all those things that have tried to take you down, whether that is racism, patriarchy, transphobia, or people in your respective faiths trying to make you conform. Even for people of faith and even for people who do not believe in a faith, I believe radicalism is very personal as it is political. To be able to name and claim who you are and assert your agency in a society, especially for Black women, that doesn’t want to see us thrive is radical as well.
AS: “That is right! There are too many people trying to dictate what a Black woman––particularly a Black woman of faith––should be.”
JS: Yes! What advice would you give to Black people who have renal kidney failure? We know that renal kidney failure disproportionately impacts the Black community. What advice would you give them?
AS: “Well, first of all, it is a very scary thing and I am speaking for myself. Just knowing that three days out of life since 2010 were spent in a chair three-and-a-half to four hours in treatment on Mondays, Wednesdays, and Fridays, was so much. Initially walking into dialysis holding my mom’s arm like a child was the most fearful thing ever. Just getting the surgery so that you can be able to have the dialysis was scary. I had to really change my thinking once I started. I can only contribute this to the Lord. I started dialysis in August 2010 and it didn’t happen immediately because I was sick and my body wasn’t strong enough. I had to work myself up to a point to where I could move freely without really collapsing because it was new. Maybe a month and a half or two months after I started dialysis, I started walking after my treatments. I would go directly to the track after I was done with my treatments, which was uncommon because they were saying that I was going to feel this way or that way. But in 2010, I started doing that. I worked myself up to five miles and it became a lifestyle. My advice would be for those that are able to do some form of physical activity do it but along with that physical activity, have a relationship with the Lord Jesus Christ. To me, that has to be the one thing I know that has sustained me.”
“Also, try to get your mindset off the treatment as much as trying to stay and get healthier. I would encourage them to change the way people eat in terms of sugars and things like that––I am still in the process of changing that. My main thing is get a healthier approach to your life. If you can exercise, exercise. If you can do something to build up your strength, do that. If you like to walk, do the treadmill or the bike, do that. I am a part of a gym and I do the outdoors during the summer because I enjoy walking outside. I would encourage them to link up with somebody or a group of people that will encourage them and help them to try to get through it because it is not easy. I am not going to tell you that this thing was easy but it became easier. It did because I really had to get my mind off of the fact that I knew I had to do it. If I don’t do this, I will die. Those who are Christians were saying to me, ‘Well, you are saying this and professing salvation’ and I am like, ‘I am being forreal. If I do not do this dialysis, I will die.’ My physical activity in terms of walking and being more proactive in that area definitely helped and sustained me because when I went back to the doctor for the transplant, they said I was a healthy vessel to receive a new kidney. It is going to be difficult for some too because not all families understand what is going on when it comes to dialysis. So if somebody is able to connect with a social worker and advocate for those who are on dialysis, I strongly encourage that. They need that support. But in my case again, I was proactive. I had relationships with the social workers, the nutritionists, the nurses, and the doctors. And we didn’t always agree but they knew Aretha and they knew what my expectations were: I wanted to be well. And God allowed me to be well. I am well in the midst of getting a transplant. I am healthy and I am whole. So, I encourage them to take care of themselves, have someone advocate for them if they cannot advocate for themselves, and just do some form of exercise or activity during the week.”
JS: You are definitely a testament to the notion that it is never too late to live your life and to be the person that you want to be, in spite of everything that has happened, and to still find happiness and to still be an advocate for yourself and so many others. With this, what are you the most proud of?
AS: “I am the most proud that I have three beautiful children and that y’all love me. Unconditionally.”
JS: Mom, are you crying?
AS: “Yes.” [Starts crying]
JS: Aww, Mom! Don’t cry. I knew this was going to happen!
[Both crying and laughing]
AS: “Okay, wait! Let me start over!” [Laughing] I am the most proud that the Lord allowed me to live to see my three beautiful children and that y’all love me unconditionally. That is what I am most proud of.”
JS: I love you so much, Mom. We love you so much.