“Krippel Marlenetjie,” they called her, in the township where she grew up, outside Wellington in the winelands of the Cape. Little crippled Marlene. But for Marlene Le Roux, who wore a leg brace after contracting polio as an infant, the term was one of affection, a testament to her strength of spirit and her refusal to hide herself from the world.
One of 11 children, daughter of a factory worker, she had a singing voice to match her zest for life, and she would travel from dorp to dorp, raising the rafters with her songs of praise.
Her listeners, stunned into silence, would walk to the front and leave coins for her on the stage in tribute. Her dream was to study opera at UCT, but at her audition, the Professor looked at her and said, “But what are we going to do with a disabled opera singer?”
So she enrolled for a Music degree at the University of the Western Cape instead, and became a teacher after graduating, specialising in sharing the joy and upliftment of the arts in disadvantaged communities.
Today Marlene is the CEO of the renowned Artscape Theatre Centre in Cape Town, and she is also an award-winning disability-rights activist whose life-affirming motto, learned from her mother, is “pick up yourself”.
Marlene sat down with Ruda to share the inspiring story of her triumph over adversity, the power of community, and the lessons she learned from the life and tragic early death of her son, Adam.
Transcription of Ruda Talks Change with Marlene le Roux
Ruda Landman: Hello and a very warm welcome to another conversation about life and change and choices, and how, sometimes, you don’t have a choice because life happens. And my guest, Marlene le Roux, has a huge story to tell: CEO of Artscape and disability activist and general stirrer-upper – huh, Marlene?
Marlene le Roux: Ohh!
RL: Welcome! Good to have you.
MLR: Oh, thank you very much. Thank you, Ruda. I’m actually more privileged because you’re my icon. Yes.
RL: Aww, thank you. Ahem, sorry. You grew up in, in a township outside Wellington, hm? And it was polio at three months?
MLR: Polio at three months, and a very loving community and I call them the Abba and the las, laslappieskombers, because it’s like in, in English we’ll, you’ll say it’s the quilt. And, because it’s so diverse, it’s, but it’s a community that taught me that even if you’re down you get up and you move on because there’s no time to sit around.
RL: There were 11 children in your household. It was your granny, who was, what did she do? She was a factory worker? No, she was a domestic.
MLR: She was, she was actually so many things. She was a domestic worker at some time, she worked at the factories, she was a seasonal worker because I come from the farm areas. And my mother came home and I became the eleventh child in, in the household, with my gran and my grandpa. But what was the beauty of it? It is the display of how communities can rally around each other. And how, amidst, against everything, I always say I’m a survivor of apartheid and, in that particular community as per say, if I look back, I look at, against all odds, women that you could never, that, that will not be on the front pages of newspapers like me being interviewed because of my story. There are so many women there that I grew up, that just had this resilience, they, they didn’t have the vocabulary like I have now to say it was resilience. It was about empowerment, is about being activists. They didn’t even realize that they were that time feminists, because they are my role models. Because if I look back, and if I look at their lives, my life as it is now is a blessing, because they fought for me.
RL: Ja.
MLR: And it was not just my, it was not just my household. It was a collective effort from that community.
RL: But they were just living their lives. This was what they had to do, so they did it.
MLR: They did it, and…
RL: And there’s a lesson in that in itself, huh?
MLR: The lesson for me is, what, get over yourself.
RL: Yes.
MLR: And, this is, there’s things that you can’t
change at that particular moment, but you need to do things. And don’t let me
say it’s simple, it wasn’t simple, at all. But, if I look back, I want to pay,
all the time, tribute to them. Because they are my icons.
RL: You were almost shown a different possibility in life through music. Even as a little, little girl, because you sang.
MLR: And that’s why the arts are so important to me, is that when I was on stage, my disability disappeared. And that is why with all culture, you’re not born with culture, you’re not born with religion, and you’re not born with language. You’re enculturated by the community and I want to pay tribute today to Wellington, and especially the Scheme area where I come from, because I was enculturated by them. Because our house was surrounded by the Troeps of the Kroons, the Christmas bands, everybody could play a musical instrument, everybody sang, and I was introduced, from a very little girl, my music training was in die hokkie – every house had a little hokkie where people will stay in. So my guitarist, Moos Marthinus, was a brilliant composer, I always say wrong time wrong place. He used to compose music and from a very young age I was the singer for these particular songs. And we used to travel from little town to little town, little farms to little farms, so when people ask me why am I enjoying my work and understanding the arts – because I grew up without props, without sound, I needed to learn how to capture my audience and to make them silent at a very young age. Because the audience was unpretentious – if you don’t know your craft, they boo you, they just snubbed you, and, but if you can do it, they will come. I will never forget, it was on one of our farms in Wellington, and because we need to create in apartheid era, you needed to create your own society, your own culture and your own way of socialising, and we had these song evenings and I went to this particular, I was asked to go and sing, and I can still so remember Yes, Jesus Loves Me – that was my song, en God is die Liefde, and there was this dead silence, and the hall was, the hall was packed with people and I thought ‘tonight, I didn’t make it’. And as, there was this silence, people came with their last cent, and their last five cents, to come and put it on the stage. I will never, ever forget that. And that night, I’ve realized, at a very young age, the importance how to communicate with people and how the arts doesn’t have colour.
RL: It transcends.
MLR: It transcends…
RL: Circumstance. Yes.
MLR: It transcends how you can move persons. And they didn’t, they weren’t silent because I was, as they called that time, they didn’t have kosher words, they will say krippel Marlenetjie, mank Marlenetjie, you know? Mank Marlenetjie gaan nou sing. Crippel Marlene is going to sing. That is what the MC will say. Hallo?! And they didn’t, they weren’t silent because I was, as they called that time, they didn’t have kosher words, they will say ‘krippel Marlenetjie’, ‘mank Marlenetjie’, you know? ‘Mank Marlenetjie gaan nou sing, crippel Marlene is going to sing’. That is what they MC will say. Hallo?! But…
RL: So it wasn’t, they weren’t quiet out of sympathy.
MLR: No!
RL: They were quiet because you held them in, in your hand.
MLR: In, in, in, in that. So the arts plays a, a…so it doesn’t have colour, it doesn’t have language, it’s got nothing. If you can move people, that’s the importance of it.
RL: You were hoping, wishing, to go to opera school at UCT, and then it wasn’t to be. Tell me that story?
MLR: The professor saw me, I did the audition, and he said straight in the face, as, as if I’m not, I’m invisible: But what are we going to do with a disabled opera singer? And then another lesson happened to me, because the whole community rallied around me to go to UCT…
RL: How did that feel?
MLR: It’s like, I’ve worked so hard just to be me and to accept me, to be at the university, now a different step comes in for me. It’s like, I felt another door close. And my mother was a factory worker who only had grade 3, but had the wisdom of a PhD, sat to me, and she said: “Pick up yourself. It was a moment that we had. We’re going to the University of the Western Cape.” And WOW – it was the best decision ever!
RL: Why?
MLR: Because I was introduced to the new South Africa. A woman of colour, grew up in a community… Because stereotyping; apartheid worked wonderful, because it put people into boxes. And it put people into boxes to think: As a woman of colour, you’re better than a woman that is black, which is African. So here I went to UWC, wow, my world opened. My roommate was Rebecca, what a wonderful person. She was Xhosa, and the two of us, for the first time, slept alone, on a bed alone, because I grew up sleeping with two other people on a single bed. And you know Wellington is very hot. So I’m a terrible lover, so I sleep straight jacket, because I can’t touch the other two. So here we are in a room of our own, we don’t know what it is to shower, because we grew up, both, without hot water and a toilet that is outside. So constipation is part of my life, you know, just to bring it in there. But here we are, so we used to sleep together on the single bed, the first time, because we were scared to sleep on our own. So there I am, thrust into, and it prepared myself for the new South Africa. It also prepared me that: My good grief, we’re all human beings. Coming from this conservative community, thrust into UWC, that opens a total new world for me. Best decision was that UCT discriminated against me because I had polio. And for me, that day showed me you need to take your lemons and put it into lemonade. But if it was, again, not for a strong woman like my mother, who has been through a lot in her life, I could’ve just end up, I could have ended up as a stat, as one of statistics, being unemployed, being disabled, and feel sorry for myself.
RL: Ja. Ja. Your mother sounds like a very special person. She bought a piano on her factory wages.
MLR: And we had a very small room. The entire room was filled with the piano. Non-one could understand it. And I used to play and everybody used to sing around, so, all that I’m saying, she had vision. And if I look back…
RL: And a vision that was much bigger than her circumstances.
MLR: It, that was it.
RL: She, it sounds as if that’s the one thing you learned from this high: That circumstance do not, circumstances do not determine what you can, or you are, where you could go.
MLR: Yes, you can’t say: Oh, this has happened to me, and this is the reason why I am now the outcome of this. And, and these two women, my granny and my mother, showed that to me. Is that…
RL: That you always have a choice. You can use it.
MLR: You always have, you, you have, you, you use it. For instance my granny was a domestic worker. She will, 5 o’clock in the morning, her washing would be up, and then she would go and work for the nooi, for instance, to go and do their washing. She will come back after a full day, do her supper, do all of that for all of us, and go to church. And have, being this dignified woman, put on a hat, she used to love beautiful clothes. So from her little wages that she has, she will go, be innovative. So we learned from a very young age how to do your own hair, how to do your lipstick, how to be grand, how to go to ballroom dancing, all of those things. So, in, in the midst of poverty, you learn how to have dignity.
RL: After university you started teaching, and you said to me just now that, actually, at heart, you’re still a teacher. Why? What, what is, what is teaching for you? What does it mean?
MLR: Teachers in my life turned my life around because they believed in me. Books; knowledge is not just power, it’s about finding yourself. And that is why, when I put on, I don’t see myself as a CEO, I see myself a facilitator of people. And teachers can break or make a child. And it is so important to have good leadership in teaching. You can have all the computers in the world and a room can be filled with computers, but if you don’t have the resource as a teacher, how to guide a child, how to open up this particular resource, that computer room will be in a year’s time, dysfunctional. So the role and the capacity and the resource of a human being, how to depart with knowledge, how to enhance people’s lives, that depends on a teacher and a teacher’s attitude. So I firmly believe that we as a country must have more emphasis on how do we enhance teachers’ status, and that the teacher become much more that role model in our communities. So give them a good salary, give them the resources. So I talk about equality and equity, and it’s very important that if, I’ll make an example: If I take off my leg, Ruda, now, I can’t walk because I wear a calliper. If I have my calliper on the two of us are equal. But I need this resource that cost me R60 000 to be equal with you. So the same in a disadvantaged, economic social disadvantaged communities that is still the construction of the apartheid era, we should put in more resources and I say more qualified teachers. And bridge the gap in order for us to say, and that, in that way – I spoke in the beginning that you’re not born with culture, religion and language – in that way, you look at the holistic development of young people’s mindset, you look at critical thinkers, but also critical thinkers that take responsibilities for their own paths in life. So because you can be a computer programmer, but you can be a racist, you can be a sexist, you can be homophobia, so it is about how do we look at our society in the holistic development. What kind of citizen are we striving for? And, so we need to imagine, and with imagining you need to engineering and engineer a new South Africa. And that is not going to happen overnight. So it’s how you use your language, what words you speak, your actions will count, and that is where a teacher plays a vital role in our society.
RL: But it sounds as if you ended up in the perfect place there, with Artscape. You joined them as what? What was your first position there?
MLR: My first position was first Development Manager.
RL: And? How did you, did you like that?
MLR: I, I, I perfectly loved it because I was involved in so many things that time.
RL: How did it happen?
MLR: That happened because I didn’t believe in outcomes-based education, I was a subject adviser in music. And for me it was that, and it was not the teachers that didn’t want to go and teach in the disadvantaged schools. No, they actually, music teachers and arts teachers, they take it so serious that they want to go and teach. And me being the subject adviser for the Wynberg area, for Khayelitsha, for Gugulethu, Manenberg, the teachers says, Marlene, we would love, because we have 5 music teachers at one school, we would like to go at Mitchell’s Plain for instance, because we believe that music can open up – it’s about discipline; it’s not just about becoming a concert pianist. But it’s about audience, it’s about the discipline that it comes with it. But we had outcomes-based education. And outcomes-based education gave us a learning area that is arts and culture, not the science. To be a music teacher, to be a ballet teacher, to be the first violinist in an orchestra, you need to start to play the violin in pre-primary, even when you’re 3 years old, to start. So you need to have that path. And I said, that time to the authority, because I was one of the founder members of SATU, to believe in curriculum development, and part of it is to have the arts as a subject, because the arts is a science, it’s not just about passion and tokenism and about emotions. It’s not just about that. It’s about, it’s a science. You need to practice, you need to understand, and for us it was to have music as an itinerary subject, you have a teacher, music teacher, and you have ten schools underneath you, because I could see well that we don’t have the resources. But what happens? We then had arts and culture learning areas. So if you have a free period, the principal will put you as, in that particular period, and I said no. We’re busy here with tokenism. So they made my life hell.
RL: Sounds, it sounds like dabbling. A little bit here, a little bit there.
MLR: It was dabbling with…
RL: But nothing structured and precise, almost.
MLR: Nothing structured, nothing precise. So if you want to be, to have your child to go into music, you need to…
RL: It wasn’t enough.
MLR: It wasn’t enough, because you need to pay for that music teacher, so if you are based in a township or on the Cape Flats, your parents don’t have that particular money to pay for a, even if your child has natural talent. So all of these things, I said it can’t happen like this. You need to be able to invest in a music teacher to teach the child how to read music. How to play an instrument, to be a ballet dancer – it takes a lifetime to be the principal leader in that ballet corps. So that is the bigger picture. And to land at Artscape, I realized, that one door has closed, but I can’t leave the children. And I didn’t leave, I never burned my bridges. I said I will leave to give you a break of me. Just to give you a break. So, I’ve developed a programme at Artscape, and I was very grateful, and I’m still extremely grateful that I had this opportunity to develop an education programme for Artscape. So we were the only theatre in South Africa and in Africa that had an Audience Development and Education Director, and it was me. And through this, I then worked alongside the Education Department without the bureaucracy, to have education programmes where we then had music teachers giving their time as mentors to go and teach in the schools. And then we had a partnership with the orchestra that has highly skilled musicians that then started the Youth Music Philharmonic Orchestra and through that the musicians then teach music literacy programmes in the townships. So if you go…
RL: So you could, you could do what you wanted to do with a different vehicle.
MLR: And again I would like to praise the two women that taught me: When one door close, just take that and do it the other way around.
RL: Ja, ja.
MLR: So we do have a full-fledged, wonderful music programme at Artscape, with the help of the Philharmonic Orchestra. We have a jazz music programme, also with highly skilled musicians, teach music classes, we have Dizu Plaatjies, professor Dizu Plaatjies, that has now an indigenous instrumentalist orchestra based at Artscape, so that we can work alongside with the orchestra and our indigenous ensembles and we fuse it. Because music has the rudiments to be able to reap music. But it’s also the empowerment. So if you want to make it in our industry, and you want to have royalties, what do you need to do? You need to register your composition. You need to be able to compose your music and to write it down. And in that way you have a legacy. And…
RL: You need knowledge and skills, hard knowledge and skills.
MLR: You need hard knowledge and skills. So, so that Africa can’t just have funerals and then there’s a plea that the artist that is so famous don’t have money. So you can’t just have this all the time. You need to say: Okay, take it back. So, and that is what is…
RL: But this is about, this is about you now today. Not about your cause. Did you see the CEO job coming? Did you expect that that would be the next rung, or was it out of the blue?
MLR: No, definitely not. I didn’t apply for the CEO job. For me…
RL: Why not?
MLR: I, I believe that everybody’s CEOs. I, I, I firmly believe that you can make a difference and, in whatever job you are, are in. It is…
RL: Yes, but the leader can play a huge role. So when this, when this position was opened, you didn’t step forward?
MLR: I didn’t apply because we live in a wonderful South Africa, but we also live in a transformational South Africa. So I was not the first choice of the board.
RL: And you knew that.
MLR: And I knew that. And I’d, I took it beautifully in my stride. And they had a wonderful candidate for, and it was an African, black South African man for the position. I called the staff together, because at that time I was acting, to pull everything together. And I called the staff together and I said to the staff: I’m still going nowhere, and I’m going to support this wonderful person and we’re going to take Artscape, ’cause for me, it’s about the cause, it’s not about me. And the staff then said: No, we are waiting. And then he decided not to come. And then the board said: Marlene, you must step in. And I said I will step in with the team as it is. And for me it was a wonderful opportunity, it is still a wonderful opportunity, I’m learning every single day. Because in South Africa not a day goes by that it doesn’t have changes. And not a day goes by that we don’t talk about race. Not a day goes by that we don’t talk about gender. And for me it’s like, if you’re going to take yourself too serious, you’re going to sit in the corner and say: Aaah…feel so sorry for yourself. So, luckily I don’t have that particular characteristic, because I have curve balls in my life, ‘s all the time.
RL: Ja, ja. You’ve just recently had another curve ball and I want you to go back to that. You were married for about 20 years?
MLR: I was married for 27 years.
RL: But you met each other, his name is Simeon, you met each other when you were very young. What made the relationship work? Because it’s now come to an end and I’m very conscious of that. But, over the years, what makes a relationship work?
MLR: I think a relationship work when you have respect for each other. And life also changed. And being a woman with a disability, you know, you always have this, where relationships, it’s like, Simeon was actually my first boyfriend, if I can, can say that. And you’re just so in awe that somebody is interested in you, irrespect how confident you are, your disability always, like that hidden factor for people to ask you out. Or, in that time, in the 80s and early 90s, it’s, it’s a foreign thing for men to ask women, or for anybody to be in a relationship. So, for me I was totally in awe that this man was really interested in me. And we had extremely good times together, he was very good for me in my formative years.
RL: But there was a, there was a real bad knock when you had brain cancer quite early on in your marriage.
MLR: I had brain cancer and I had brain, a brain tumour. And they said I will never ever have children. And…
RL: Can you remember hearing that?
MLR: I was sitting there…
RL: It’s such a radical thing.
MLR: And again I sat there and I said to myself: I must accept this. And I moved on. And I became very busy in the elections time for, and that time I was in the Eastern Cape, I taught in East London, and that’s where also I had a different activism time in the Eastern Cape, because it was the time of Oupa Gqozo And you know, Oupa Gqozo was a rough, and I, I think I’ve, in fact, sitting here, I should have died 9 times already. So I’m not ready for death yet, it seems. But…
RL: So, which elections are we talking about? 94?
MLR: We talked 94, 96 – before 94 I was, I was a, I was in East London. But, what is important to state here is that, again that time, I’ve realized that, I became so, so busy, because it was again the other people in the ward, they died, I survived, who also had the brain tumour. And they died, I survived and I felt so terrible that I’ve survived, and a week after that, because my children needs to go to the Eistedfodd, I was back at school. Because I must practice for the Eistedfodd. Because, I’ve enrolled these young people for the first time, to be seen in the white Eistedfodd, and I wanted to show the white Eistedfodd that we can win because we must go via the back door.
RL: Literally?
MLR: Literally, by the the back door. And we won. By the way, we won. It was a big shock for the Eastern Cape that we won. But I had…
RL: A black school?
MLR: A black school, we won the white Eistedfodd. Because I’ve, I’ve, I said to the organisers, that we will go via the back door. But just give me a chance to show off that our children can sing, and there we won! But then I had a relapse, because I was still sitting in the staff room, and my jaw locked. Because they took out the tumour through my…
RL: Sinuses?
MLR: Through my nose, through my bridge, and it was just on my hypothalamus gland. So they opened up everything, so if I have just a small cold, it’s gone. So with that, I became also again very busy, we must win, the ANC must win. So I forgot about this whole tumour thing. I forgot about that…listen here, I, I forgot that I can’t get children because I’ve accepted that. It’s another curve ball, okay. So every time I just feel so nauseous. So I was in one of the shacks with the gogos, with the ANC Women’s League, we’re now campaigning, I’m, I’m busy with a creche in Kuilsriver that time, in Kalkfontein, busy with the creche, and there I faint. The gogos said to me: Marlene, we think you’re pregnant. I said: Hallo? Who are you to tell me? I am not pregnant.
RL: Very important doctor said I can’t.
MLR: Very, a very important doctor said I can’t have children! And there, my miracle, was my little Aimee. And she was my miracle. That year I was actually chosen to be one of the counsellors, first counsellors for the ANC, and I decided to decline. Because I wanted to give my body, because I have polio, this miracle to grow. So the miracle for me, was actually to say no, not to be in politics that time.
RL: Ja, it’s a huge choice.
MLR: It was a choice and I’ve decided, actually, to carry my beautiful Aimee. And then I had another miracle.
RL: How long after that?
MLR: Five years after…
RL: Five years later.
MLR: After my little Aimee, I had a little miracle, and it was a son. And while I was carrying Adam, I decided I’m going to give his name Jan le Roux. Because I decided I want to take back my heritage, I’m Afrikaans. Who can tell me that I can’t have a son named Jan le Roux? Because this nonsense of us putting us into categories, who’s Afrikaner and who’s not Afrikaner. Look at me! So I decided I”m gonna take back my heritage, he’s going to be Jan le Roux. He’s going to be an activist, he’s going to be a feminist, he’s going to be everything that South Africa wants, and you see how a minds work. Ooh, and I carried this pregnancy with pride. I was at all the rallies again with this pregnancy. But a friend of mine gave me the book Expecting Adam, and it touched me so.
RL: Martha Beck.
MLR: Martha Beck.
RL: Ja, beautiful.
MLR: It’s a beautiful book. And this book is telling this story about this Harvard professor, and it told that she’s carrying a Down’s syndrome child. And she must abort it, it’s a true story. Because her husband is also a professor at Harvard and they’re atheist. And they said to her abort the child, because the child is not going to fit into this family of professors. And every time she goes to the clinic, she dreams about angels carrying her, she’s also an atheist. And she decided not to abort the child. And her Adam…
RL: Why did, why, why did someone give you that book?
MLR: It was a good friend of mine.
RL: It was, sommer? To read?
MLR: And he said to me, in his, it was a birthday present for me. And he said to me, you need to slow down. And I was very upset. I phoned him, I said who the hell are you to tell me I must slow down? And we had this, because he’s very religious, and he said to me read this book. And when Adam was born, he had red hair, he was fair, he looked just like Jan le Roux. But it was something telling me my life is going to change forever. Because when they put him, because they put me, I had these, a caesar under, under anaesthetic because of my hips.
RL: Full anaesthetic? Ja. So you were asleep when he was born, ja.
MLR: Full anaesthetic. And when I saw him, I knew, it was an Adam. I didn’t know yet, but then I knew. This is Adam. And Jan turned into Adam.
RL: And he had cerebral palsy.
MLR: And for six months, Adam cried nonstop. And I had the best pediatricians. And every time they just changed the bottle. Every time they just changed the teats that he must suck, because he can’t suck.
RL: Ja, they thought it was colic.
MLR: They thought it was colic. And my granny, who had ten children, said to me: Marlene, change doctors. Because Adam, there’s something wrong with Adam. Again, me, being learned, saying to granny, what do you know? I’m with the best. And she looked at me, I will never forget her look. And when Adam, when I changed doctors and Adam was diagnosed, both sides of his brain – the doctor said to me I must put him in an institution because he will never walk, he will never talk, he’s blind, he will never, ever, if he lives for a year, it will be a miracle.
RL: Jis, what does one do with that, emotionally?
MLR: You, and you sit. You, you, and it’s just cold facts, there’s not a social worker, there’s nobody that you can lean onto, to ask, because it’s like… I can still remember the same day, what I had on, the taste in my mouth, and a photographer was waiting for me at my house because I was just chosen the first chairperson for me Cultural Commission of the Western Cape. SO a photographer is waiting for me at home.
RL: And you get this news.
MLR: And the doctor called me, I must come in urgently. And I still have the picture of that day, because the picture reminded me my face going to the doctor and my face coming back from the doctor. And my life has changed tremendously. So that whole…my granny didn’t speak to me for six months. Because they had a journey with me, being poor, didn’t had transport, that’s why I called my community in Wellington the abba community, because they used to abba me on their backs to the train to catch four trains to go to Princess Alice Home to get a check-up in Retreat. So all of that came back to them, my mother…
RL: She just couldn’t deal with it? Couldn’t face it again.
MLR: That, she couldn’t, they couldn’t face it again. And I needed to sat them down to say: Ma and Tietie, Adam has resources that you didn’t have. Adam has me, who has a car, who has a job, who can afford two nurses that can assist me. Because that day I made a decision, that Adam is going to have a full life with me. And I sat down with my little girl, Aimee, to tell her, this is now your family, take it or leave it. Other children has no parents, has no food, have, are orphanage, you only have a mother with a disability and a brother with a disability. And she loved him unconditionally.
RL: So, he lived for fifteen years. And then he died two years ago this month.
MLR: On the 25th of August, the day after my mother’s 75th birthday. And Adam allowed me to have my mother’s birthday in our house, and the next morning he just died in his sleep. But you are never prepared for death.
RL: How did it affect you? His dying?
MLR: The light, actually, because he was my light. He was my psychologist. Adam had over 2000 people at his funeral. For the week up to his funeral I had so many religious groups that paid tribute to Adam during the week. I had the Hindu community, I had the Muslim community, I had the different faith communities that came just to bring their way of healing into my house, for Adam. I’ve never ever thought that this child had the effect on people, different backgrounds, different cultural backgrounds.
RL: Why? How did he, how did he make that connection?
MLR: You know people used to come and visit Adam, not me. And they used to come and sit with Adam, because Adam never talks back, because Adam couldn’t talk. But Adam had a personality, Adam had a way of, if he didn’t like you, he doesn’t want to sit with you. If you came into my house with terrible troubled karma, I will, Adam don’t want to be in, in the midst of you. He had that fine sense of the ability to feel what you feel. So when I closed Artscape’s door, I needed to learn the ability to leave everything outside of my home, and go in fresh into my home. And Adam taught me how to live in the moment, Adam taught me to be calm, because you, we used to bath every night together. I had, yoo, I had wonderful nurses – Yolandi and Jean. And they know when I come in, I take over. Because then we will bath, we would have rituals. But I could love Adam unconditionally because I had a job.
RL: You had resources.
MLR: I could love him…I had resources. I could renovate our home because I had resources. That’s why I’m an activist for mothers with disabilities, because usually the struggle that you have in a relationship, your whole relationship change when you have a child like Adam. Because you become, actually, a, as a couple, you need to survive actually. Although I had resources, it is about, you are never alone anymore. You always have a therapist, you always have a speech therapist, you always have a physiotherapist, you always have people in the house that you need to accommodate, that you need to…so, for me being in the hospital with Adam, I used to sleep in the hospital with Adam. I used to learn how to cope. And that is where I say, my Wellington experience as a child, thank the Lord that I grew up in Wellington, thank the Lord that I grew up poor, thank the Lord that I know what it is to be loved, thank the Lord for that particular experience, because I learned from a very young age how to cope in circumstances that is difficult.
RL: And also to rely on other people.
MLR: And to rely…
RL: To allow other people to help you.
MLR: To, to, to help me.
RL: Yes.
MLR: And also the hospital – how not, I know that nurse I need, how to have emotional intelligence not to make it a sensational thing, oh Adam is THE Adam, but also how to appreciate the nurse that needs to help me. Because I’m depending, I’m depended on that nurse to pick Adam up for me, because I’m disabled myself. So I’ve learned to shed my ego, to shed everything. I’ve learned how to actually crawl on my knees to be the voice for Adam. And not to be important. Because no-one cares whether you’re the CEO of Artscape. So I needed to shed all the layers of being important, to fight for my child to get that bottle. To fight for my child when they’re in the hospital, to be treated with dignity. And it humbles yourself, but it also takes away a lot from yourself.
RL: But then you lost him, and then very soon thereafter, you lost your marriage.
MLR: I’ve totally lost my marriage.
RL: How did that affect you? How does one stay upright?
MLR: I just wish my, Simeon, the best. He’s married already, he has found another soulmate, and I’m happy for him. And for me, is that, it’s actually, irrespect how you look at it, you actually mourn two things. You mourn a life that you had, and you mourn a marriage. People that says that they don’t mourn a marriage…
RL: It’s a loss.
MLR: It’s a, it’s a big, it’s a big, it’s a big, it’s a big loss. And I need to mourn my child alone. Because you don’t have the person that gave life…
RL: Your partner vanished.
MLR: Your partner vanished, that you need to mourn with. Because I can’t expect my daughter to mourn the same way that I am mourning. So the mourning process for me with Adam, because it was an immediate divorce, it wasn’t a divorce of time, it was a divorce with immediate effect, with Adam’s death. So it was a divorce that was with immediacy. So for me it was the mourning of my child alone, and the mourning of a lifetime together, of 27 years. And for me it’s about accepting that journey, it’s a new journey for me, and it’s a journey also about, without bitterness.
RL: What keeps you going? You wake up in the morning and you, that realisation, that these are my new realities. What, what helps you to still take a deep breath and put your feet on the floor and carry on?
MLR: For me, I needed to…I’ve mourned Adam, in black. For a full, full year I was in black. For a full, full year I decided to stay totally alone. For the main reason is that I wanted to declutter myself. Everybody wanted to stay with me, because I was alone. I couldn’t take my daughter from the university to stay with me, that’s totally unfair. I stayed alone in the house. And that was my sanity, is to be able to say to myself to do my mourning, to be able to go through a process to let go. To go through a process that I made also huge mistakes, to go through the process of taking responsibilities, and go through the process of, without a public eye, just to have a broken heart.
RL: And in the process probably clarifying what it is that is really important to you, when you start almost acquiring connections again. You have now had the space to work on what it is that you want, hm?
MLR: And also to be silent. I’ve, I’ve learned to be silent. It’s, I, I, I feel I have changed so much. I have changed in a way that I’ve realized that life has changed for me totally because I don’t have a partner to depend on. I have, post-polio, it’s sometimes, I now, I myself now need to rely on a carer, because sometimes I can’t get up because polio affects your muscles, never goes out. And when you, I’m a proud 42 year-old, and it’s now at this particular effect that my muscles are so weak that sometimes I must have somebody to pick my, to pick me up in the house. So I have somebody living with me. And those are the kind of things now that I, I’ve concentrate to be a carer for Adam. Now it’s a different way of looking at my life, to say how am I going to look at, I now, myself now needs to depend on a person. And myself don’t want to, I don’t want to have a sensational life. I, I just want to have a life. But I’ve also realized by having interaction with so many women that my story is not unique, but I’ve learned also that in this period, that you need to sometimes come to yourself. I’ve also learned I don’t need to please everybody. I’ve also learned that I can park people for the time being. I’ve also learned that, for now, I don’t need to be the fixer all the time. And I’ve learned in my situation with my 27 years, that I wanted to fix, there was something in me that was a guilt, that I wanted to make my life with my partner that I had that time, I wanted to make it so easy for him, because I gave him a child with a disability. And that was something that I needed to unpack. He had a wife who has disabled and is disabled, he has a child now who’s very disabled. And I wanted to be, to give him the perfect life, so I fixed everything, I take, took, everything out of his hands, I had nurses, I’ve arranged everything, I’ve organised everything, because deep down in me, I was not perfect for him.
RL: You felt it was your fault.
MLR: Everything was my fault. And that is why I needed to go into that silence of a year. And to look at a path, and it was a change for me, to look at how do I look at, without bitterness, because it can easy become a to-and-fro thing, without bitterness, to say, where am I now? But also still play a meaningful role in another person’s life. And for me, if I can use my story and what I’ve learned from my story, because I’ve learned huge lessons from my life, in order, sometimes just to hug somebody. Because people would come up to me and say to me, as a mother of Adam, you must be relieved that he is now better off. You must never say that to a mother. He was my son, he was my light, and now I can just go to mothers that lost children, who’s disabled, and give them just a hug to say: I do understand a little bit. Because it’s not the words, it’s just that hug. And that is what I am doing, is to go and give hugs.
RL: Marlene, thank you so much for sharing your story, and I really hope that the next phase in your life has light in it again.
MLR: It’s going to have light. I believe in light. I believe there’s a higher being. And I believe everybody has purpose in life.
RL: Thank you. I hope that you have taken something out of this, I definitely did. And we will speak soon. Go well.
Leave a Reply