In this episode of Green Mountain Disability Stories, we welcome Dr. Sefakor Komabu-Pomeyie back to the podcast. She sits down with CDCI executive director Jesse Suter to talk about her brand new memoir: I’m Able: A Woman’s Advice for Disability Change Agents.
The memoir cover’s Dr Komabu-Pomeyie’s life as a child in Ghana, where she contracted polio and lost the use of her legs, but took heart from her mother’s unwavering support, faith, and love, all the way through to her current life in Vermont, where she has earned a PhD from the University of Vermont and is now a lecturer in UVM Disability Studies.
“It should come freely to children to know that there is something like that. That one thing is they will also have it at any point in time. We must make sure that we clarify for them that you just don’t know which one you will have, and you don’t know when you will have it. But the reality is you will have a type of disability before you die, if you live long.”
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A full transcript of the episode appears below.
Jesse Suter: Hello. I’m so excited to see you. Let me do a quick introduction and then we’ll jump in to our conversation today. So,my name is Jesse. I use he/him pronouns and I’m the executive director of the Center on Disability and Community Inclusion at the University of Vermont. And it’s it’s my sincere pleasure to spend a little time with Dr. Sefakor Komabu-Pomeyie.
And I’ve got questions. We were just talking a little bit about them, and I thought it’d be fun to start with you reading a paragraph. It’s at the top of page 71. Are you willing to start there?
Dr. Sefakor Komabu-Pomeyie: Sure. Thank you. Prof, I’m so grateful for this opportunity also. And I am ready to read a paragraph from my book that is page 71 in my book.
“I found a sister I will talk to about my challenges and fears. It was with Mawutor. I discussed my challenges. I thought day the greatest challenge I’ve ever faced in my academic life wasn’t with academic work itself. It was, Oh, it’s always has to do with stairs. Staircases and how to climb them safely to attend classes. Sometimes I fall. Most often when I fall, I get up, dust myself off and continue climbing. Or on a good day friends come to my aid. But there are times that the fall is too hard. I hurt myself and spend days in the hospital. She answered, ‘Unfortunately, these are not easy any better around here. All of our lectures are going to be on the top floors of the lecture. What are we going to do about it?’ I told her I always manage. This too I will manage.”
Jesse: So thank you for reading that paragraph. I wanted you to read that before I gave you a more formal introduction, which I’ll do right now reading from the back of the book. But just that paragraph, to me, captures so much of what I think you were trying to share with your book and and is a great introduction, I think, to your spirit. To what you call “hustle” many times.
Sefakor: Yes!
Jesse: And then there are other things that I want to talk to you more about. But let me shift from that to a more formal introduction and then we’ll jump in.
So. You are an international disability rights advocate, educator, researcher and policy analyst for the UN Convention on the Rights of Persons with Disability, and a resource center coordinator of the Ghana Education Service. You are the founder of Enlightening and Empowering People with Disabilities in Africa, and you presented on several platforms, including the American Educational Research Association (AERA), New England Educational Organization (NEERO), African Studies Association and European Conference on African Studies Switzerland.
You’re currently teaching — and I’m so happy to share this — at the University of Vermont and St Michael’s College. It is my pleasure to talk to you today.
And as I shared a little bit earlier, I just finished the book, so I’m excited for the first chance to get to talk to you about it a little. Thank you.
Sefakor: Thank you so much, Prof. And I was so honored to be interviewed by my boss! I know you don’t like that word.
Jesse: No, not even a little bit both because it’s not accurate. But but I am the director of the center where where you are teaching the Global Disability Studies course.
Sefakor: Yeah. In the Ghanian term, any leader is your boss, so it’s okay. You just need to feel comfortable with it.
Jesse: I can do that. It’s the least I can do. So again, it was it was a real pleasure finishing your book. And I was at your book launch and one of the things that you shared at the book launch and in your book is that one of the goals is to change the narrative about disability. And I’d love to start broadly. And so can you share more about what changes you want to see in how people talk about it and think about disability. So what is “changing the narrative” mean?
Sefakor: Thank you so much, Prof. Yeah, changing the narrative — to my understanding or what I want to see as this book comes to people’s doors — is to connect it to them. It is my story. But I can assure you, I want you to see that it is our message.
So if we do, I am narrating this story. It’s my experience. I want to change the narratives of policies. I want to change the narratives of practices on the ground in any aspect of our lives — whether in the school system, in the hospitals, around transportation.
You know, I talk based on every single things that we go through as human beings. But what we experience as people with disabilities are very awful.
And so this is discriminating to some extent that we don’t want to see that again. Why do I need to change the narrative is because disability is always having negative identity or negative issues around. Anybody who hears the word “disability” doesn’t want to connect to it.
But if you connect to the ordeals, the hassles that I go through practically, and you connect it to yourself as a human being, you want to think deep about how to make this a better place or how to change the environment, the lifestyles of people with disabilities.
In other words, I always say that if we flip a coin, and we flip a coin to just see that disability is part of humanity — which I always share with people broadly — that it’s part of humanity. And we need to work with every systems that are laid down. Structures that are laid down to make sure that it’s connected to the humanity.
In the spirit of what I was saying: ubuntu, in a spirit of humanity, that is: I am because you are.
The next person around you, whatever you are doing, you have to think about how does it reflect to the person. For instance, the passage that I just read. That passage: I went through a whole lot of ordeal before I met [inaudible], you know. And if we are building structures today, in any aspects of our life, whether it’s your own home that you are building and you still don’t think about it, that you will have disability at some point in time? Then I’m sorry. That is the piece of me that tells you that it’s part of humanity, that you need to just be ready to also plan your life towards how to make life easier for anybody who has a disability.
So that is a narrative I want to change about disability to make it closer to you. That you are a person, whether you have visible or invisible disability, whether you have it now or you don’t, I’m likely to tell you a hundred percent sure that you will have a disability at some point in time.
That’s what I say. That’s how I say it, because I want to prepare people well from the shock or the fear of the unknown in the future.
So I want to make sure that as much as this book comes to your door and you read, you can reflect as an individual in your home and see what you can do.
Even if you are not a policy maker or implementer, you can still start that dialog in the house.
You can still change your mindset, your attitude. You know, the very big thing that we have as people with disabilities across the world everywhere, is the attitude to not change that we are asking for. Because if you and I agree to work together, and then people behind the scene or people that are in our community do not know anything that we are working together with around disability, we are going to flop.
So yeah, I want to change the narrative of people with disabilities with this book as we change policies, especially and practices together to connect to the people that we are working with on the ground. Thank you.
Jesse: Thank you. So you’ve touched on so much what I want to talk about. So thank you for that. And some of those I want to come back to: “I am because you are”. It’s a quote that you put at the end of your email signature. So just as a preparation, I want to ask you a little bit more about that in a minute.
I also want folks to understand who have not had a chance to read the book yet, What you just described sounds like it almost could be a textbook, on a how to guide for for a policymaker or to change attitudes. And maybe more like you’re telling exactly — you’re making your recommendations. And you do that, that is throughout the book.
And I want people to understand that it’s a deeply personal memoir about your life.
You share amazing heights, deep tragedies and challenges that you’ve experienced. And sort of thinking about that message of wanting to change the narrative, and you chose to to do it in the most personal way that I can think of, you know, really just baring your soul. I wonder if you can speak to that for a moment.
Was it important for you, for your readers, to really understand you and your life in order to get that message, in order to change the narrative?
Sefakor: Thank you so much. Sure! As much as I walked through the lives of my disability journey, I realized that the stories that we carry are very powerful.
And as much as I work across the globe, with organizations, working with people on disability studies, that is the EPD Africa (which actually is my background). As much as I work with students across the world, whether they have disability or not: I also see the connection. So I work also with parents. I meet parents with disabilities who have children with disabilities. And of course working with what: caregivers or support systems, people who are helping us. I realized that every part of my life has touched base on all these in agencies, I will call them. Or institutions or groups of people. And that is why at some points I give you those recommendations: give it to parent, give it to people with disabilities, teachers, policymakers, you know.
I work with them and their stories are the same.
Their stories are the same in Ghana, Denmark, America — everywhere that I step my feet in terms of most of the time schooling, I face the same challenges. And I connect the dots that the same challenges are still in existence.
So, I just bring my life naturally. Because as much as I talk to people, most of the time about the things that I go through, some people don’t really believe that. They always ask me, “Hey, you still have a smile on your face.” You know? That is it, because when people are connected to the realities on the ground of my life, they cannot connect the dots.
“How come you are still happy?” Or “How come you made it to this level?”
And for me, changing the narratives, it’s about making sure that people don’t state it that when you are a person with disability, you are a cursed object or a negative thing that everybody thinks about.
And for me — again, to be a doctor today, I know most people doubt that as much as they see me on my scooter, they make trash of me most of the time. And so I give them my business card, or until I engage them to say hello, and we talk at length. About five minutes in they know that, “Oh, you are this person.”
So changing the narrative is so huge for me that I just want to make sure that we don’t continue the lifestyle of people with disability like this. We don’t make life very much miserable for them.
Because we people with disabilities, we are happy with ourselves. We are so happy with our life by the outside world. That is why to me, as I always say, it’s a social construct. As much as we know that everything around us society is disabling us.
So using this book, I don’t only think it is for schools –even though I’m into education. I make sure that it gets to families. It gets to offices, that it can sit down and just read a paragraph, or a chapter and answer the questions that I bring to them closely, which are very much unique in this book because in every chapter I draw you to the realities of the lives of people with disabilities.
And then you can connect to reach maybe in your community and change your lifestyle as a person, and see what best you can do. If you are able to answer those questions, maybe that will be the beginning of the discussion. To make it closer to people.
You know, it’s a taboo topic. Nobody wants to talk about it, but this book starts the conversation.
That is why I say it is our message: it’s my story but I think it is a message to all of us that anybody can just use this book.
Even I have a family right now. They are reading it to just educate themselves. So that is how far I see this going. It’s not only in educational system. Yeah, and our medical department, because, I mean, you know, [in the book] I touch base on hospital-like things that happen to me. That is another angle that we have to work through seriously in terms of connecting people with disabilities too.
Yeah. So. That is how it means to me to use myself or my story to change the narrative.
Jesse: Thank you for that. You touch on so much that I was excited about when reading this book. And again, you go back and forth and as as the “prof” that you are, as the teacher that you are, with the most deeply personal elements of your life ,and and the beauty and the tragedy of it to: what are the lessons from that?
And you and you share what you took away from that. But immediately, you know again, as a teacher I saw you again and again sharing what you hope others would take from that. And I really appreciate getting to to hear what went into that and your perspectives on it.
And a big part of that journey, you talk about your earliest days and experiences from before having polio and after. You were just talking about working with parents. And so many stories are the same: a big part of your story is is your parents’ reaction to your disability. And I don’t think they could be more different. I wonder if that’s part of your story that you that you’ve also heard from other people with disabilities, where one parent — in your case your mom — really lifted you up not just to you, but to others, you know, really exalted what you were capable of and what you would need to do in order to overcome. And and and your father didn’t.
So I don’t know if you want to speak to that on a personal note, or if you want to leave that to the reader. But I’m also curious if that’s part of the same story that you’re hearing from others. When you talk to parents and when you talk to other people with disabilities. So give me a summary. Go whichever direction you’d like with that.
Sefakor: Thank you so much. I think I’ll blend the two, and that particular part that is very important to me and I really want people to really read that chapter with dear connection.
Why would I say that? Because that actually has been the beginning of the journey for me, having gotten polio.
I mean, I’m happily married, right? And I’m a firstborn. And those pride, I have them from childhood.
And when polio strikes that is the beginning. And I see that happening to everybody who has a child with disabilities. Everybody. Nobody embraces that child who comes out to have a Down’s syndrome, to have autism, to have epilepsy, seizure or — nobody has that capacity or the open-mindedness, the attitude. Even the mother who carries the baby in the womb has a shock.
And that is the strong point for me, that we need to just change that particular shock.
We need to just make sure that we don’t have any shock when we have any child with a disability from our parents angle. Why would we have that? If you develop that particular part that disability is part of humanity, you know? I want to embrace that because we have lost it from the beginning.
So yes, as I work across the state, I’ve worked with so many students who as you know, I view them with self-advocacy skills, the strategies I teach, and all those students who actually own their disability.
And as we have what we call disability pride, right? For a student to get to that level, to be very much proud of himself or themselves and own that identity? Because to us, disability is part of our identity, we cannot deny it. That is, some of us, we believe that it’s part of identity. And when you embrace yourself and you want to move forward, you will see parents really stopping you for what you want to do.
I can share a typical example with you.
I work with this student. For about six months, we were building a relationship. I mean, when I started with them, it was like this: [frowns, head down].
And then gradually this when they saw me: [head up, big smile].
They would definitely be like, happy. And parents are very much happy. And one thing that I realized they were having that time was because it’s so in the system that they don’t have access to social life. They are being homeschooled. And also the fact that they have been indoor, they don’t have that connection, right? So I develop a program to have this type of togetherness with them. A typical example was we were going to have a Halloween program, or a Halloween day, which they did not have anywhere to go.
So I had the students — I mean, it’s American culture. And if you hear that and you are not part of it, for them, some of them were really questioning, “How do we do that?” So I brought them together. And then one thing that I know my students like is when they see the faces on a flyer, right?
And we are going to share that flier out that, “hey, this person is presenting!” and it’s something huge. It might not mean anything to some people that presentation, or a common flyer, but to my students, that is the best they can have, that people can see what they can do or they can see them. That they exist.
And this is a student who have gone through that process with me for six months. And I told them they are going to have a panel discussion and share out things that they have learned during my working with them during that time. And then also build relationships to know that there is another person in Rutland or in another place that works with me — that’s has disability that you can connect with.
We were at an event, preparing a flyer, and I had some of the pictures from them and the organizations in the schools that they wanted to be associated with, and all this stuff.
And this person, when we were talking on the screen like, [their] mom came out from the room, and was very, very, very furious.
She was like, “Sefakor, I love it when you come. They are always happy with you, da da da. And we are so proud of the work you have done with them right now…but we don’t want to expose them.”
That is the weight which shut me down. “We don’t want anybody to see them. We don’t want to expose them.”
I’m like: “Seriously? So what am I doing here?”
Because for me, I want to take these children out of the shadows. I want to expose them, to let them know that there is another social life, another part of life outside home. To let them know that we have a connection. You are not in it alone. And Mom was very proud to tell me that, “Well, this is an exception because I have guardianship.”
So when I talk about policies, that yes, that is a policy that is really very much overprotective.
I don’t know, because as much as guardianship is concerned, I don’t know to what extent the child is supposed to say that “I want to present” or “I want to meet a friend”, you know.
So for me, when I connect that to my experience back home when my dad ran away and didn’t want to associate with me, or didn’t want me to be associated with him, it’s the same. It’s just that it has a different, I would say, a different design in the U.S. system. You know? The stigma is the same. But we we characterize it differently. And here the policies are so strong that you are not able to penetrate through it at times. The moment she told me she had guardianship, I couldn’t move forward. And the student couldn’t perform.
That is where I want people to connect to, to know that it’s still happening. Attitudinal change. “We don’t want people to know that we have a disability. We don’t want them to associate themselves with that. We don’t want people to know that we have children with disabilities that we are keeping in our homes.” Yes, it’s happening in America.
And for me it’s huge because if I work with this student to that level and this student is able to join the other ones, then I’m able to do my job. Because self advocacy skills and strategies bring you out, and make you able to vouch for yourself. Able to tell what you need and how you need it. And then ask for your reasonable accommodations.
But realize for kids there is a blockade, that you cannot go further. So yes, that story of myself, it’s another person’s story too. But it’s just packaged in a different way.
Jesse: Again. It touches on so many aspects of what I think you were sharing and what I’m hearing you confirm what you’re trying to share in your book, which is great.
I want to ask you about more about how people with disabilities see themselves and be seen by others, the importance of that? And what you were just talking about I want to also ask you about differences ,that you’ve experienced in the different countries that you’ve lived and worked in. And I can’t do both of those at the same time. So that’s why I’m just saying it out loud.
I do feel like I would really miss an opportunity if I didn’t follow up on what you were just talking about, though, because you said there’s a difference in the design in the US system. And you, unlike most, have experience in different countries. Having lived and worked in Ghana and Denmark and the United States and places.
And that also felt like a theme in your book where there was both the similarities that you’re talking about with stories being similar, but also, you know, deep cultural differences. Differences in ableism, differences in racism. And and I hear you talking about many of the ways things are the same, and there are differences. And I wonder, as I struggle to figure out how to ask the question, what would you like your readers to understand?
And maybe even as you say, people don’t believe you sometimes about experiences. You mentioned in your book, some people in Ghana wouldn’t believe you about things that happened in the United States. And people in the United States don’t believe you about other — so what do you wish people better understood about maybe the differences and similarities?
Sefakor: Yeah. Thank you. That is one of the areas that I really want to talk about in terms of believing.
As I said, in Africa, not only in Ghana, we have been deceived so many times in so many things. That is why I touch base on that, the deceived part. Because, if I tell people they don’t get it.
So that’s why I wrote it down. To authenticate it. So that you can quote me on that, that I said those the things. I experienced them myself.
So those things we never talk about them. In Ghana, America is projected to us in a very, very luxurious, clean environment. That is a package we have about America. And when I say we still have people with disabilities going through pain, chasing how to get access to food, chasing access to housing, accessible housing. Chasing how to get transportation, it doesn’t sound well to a Ghanaian with disability. No, they can never believe that. That is the process.
When I narrated that it took me one more year to get to where I live now, in terms of how good my four-bedroom house down in Ghana I left behind. And I’m still looking for housing, accessible housing/ Nobody believed that. Nobody.
So that is why I had to put it down that I have been lodged by Dr. [inaudible] and their family and all those that, you know, I just wanted it to be real. Because as much as I tell my people that this is not true, Americans with disabilities are also suffering. They’re also fighting still the system. There are strategies.
And the worst of all, if you are a person with disability of color, or you have another identity attached, it becomes double agony.
They don’t get it.
Yes. So I just put it out there to connect the dots, to show the differences and to show the similarities.
Of course, life in Denmark was so blissful. You know, the Danish, they don’t know the word “poor”. It’s actually not in the dictionary. It’s not part of the dictionary. So everything is leveraged. Yeah, everything is leveraged. They don’t have private hospital. Private school. Yeah. I mean, where I went, I did see disability to be a problem. Everything was so much assessible and they were in the system. Or they have captured — even though they are also fighting the system — life there was a bit better in terms of accessibility. At least I can talk to that.
Yeah, of course they are also fighting for their rights every single day. But yeah, those are some of the challenges, but I can share broadly that comparative analysis I can read between Ghana and the US system.
Jesse: Yeah, I found that fascinating. I love that earlier you shared that some people still don’t believe your stories and a lot of what you shared, both in terms of the racism, things that you’ve experienced, as not a U.S. citizen? When we talk about them, certainly there are lots of things just in working with you that I didn’t know.
And I could feel that impulse to not believe it. “It can’t be that bad. It can’t be that hard. It can’t be left to your own hustle to do that in the United States.” So I appreciate very deeply that you shared that.
So, you alluded to this earlier and many times in your book. Can I quote you, from your book briefly? I had a couple of lines.
Sefakor: Yes. Feel free.
Jesse:
“So I must say clearly that there are a lot of invisible disabilities that we do not have names for in our country [talking about Ghana] due to so many reasons. And I will talk about that one day in another book.”
Another quote.” I will tell you more about my love and marital life in the next book. Don’t let me forget.” That’s also part of the quote.
And then the third quote is “Watch out for my next book to hear more about how the Global Disability Studies course is expanding across the United States, Africa, Asia, Europe, etc.”
And I think you just told me a fourth thing that might be in the next book.
So what are your thoughts about the next book and, you know, whether or not you want to share the title, for how you came to this book or your next book. I just love that story as well. You can decide that, But what’s next?
Sefakor: Thank you so much, Prof. Yeah, What next? There is a book coming. I will say that my son gave me the title: “I’m Grateful.” Yes.
Jesse: Are you releasing that now? Is this a scoop? Are you sharing the title of your second book?
Sefakor: Absolutely. I’m sharing it now so that if somebody wants to capture that. “I’m Grateful”.
I don’t know if somebody will come out ahead of me. I don’t know. But that is my son’s title that he gave the second book. I’m grateful one, to God and I’m grateful to people around me. If I have been helped in so many journeys. In all my journey, I can never thank people. I have just been supported I don’t know how, but God, I believe that God puts people that I call “Destiny Helpers” in my way that brought me to this level that I can do something about the systemic barriers or structures that we have for people pulling us behind.
So, yes. Why did I hold those particular topics and keep reminding you that watch out? Is because the way to be the greater parts of the book. I mean, my next book, because people actually want to know my married life, right? How did it happen? I give a little about that in this book just to make sure that people know okay, even though some people ask me when I say I have twins, first thing is, “You are married?”
And then I have to go, “Of course!”
I have feelings. I’m a human being! You know what’s really sad? People don’t even think that we have feelings. Like we can’t have feelings as people with disabilities.
So I would say that that actually was one thing that we discuss in this book, interpreting the body. I wrote a chapter in this book expressing how we feel about people with disability.
We have feelings just like you!
So that’s part of it. Like a whole lot of my marital life. It’s something that I want to share because culturally, people don’t really want to connect with people with disabilities. They don’t have that pride in us. And at times too, when some of them connect with you, you realize that they don’t meet what marriage means to them.
Because some of the student, the people that our wife, we we have to fight police here and there, or the judicial system to arrest people, or to make sure that they look after their children with disabilities or with parents with disabilities, you know? So those issues are also there.
And next, the global disability studies course? That is actually pulling people from many parts of the world to change the narrative.
Why is it so?
Because in this course as much as I build this curriculum, my expectation is to dismantle disability in every home.
So when you are in the nation of Australia, when you take this course through this online asynchronous program, the main thing for you is to make an advocacy campaign in your own country, wherever you are focusing on something specific around disability and change it.
And the interesting piece for me is: changing it means you are going to do a presentation. You identify a community, and I want people to connect to the communities directly. Wherever you working, your home, your community, wherever you are doing things before you take this course, you do something and educate them.
So for me it’s kind of a movement that I’m forming in academia, to make sure that people with disabilities are also captured around every table or discussion or eating in a home. Wherever you are, you find solutions practically with this course.
So I believe strongly that anybody who takes this course — as you know, anybody who took this course is very much on duty on the ground. Like, that’s one thing that makes me happy.
Because the class just doesn’t end. We are still working in the communities. Yeah, and that’s the part of it that it’s very much powerful for me.
And I will say that as you know, it’s coming up in Ghana live college classes are starting with the National Disability studies, right?
So yeah I strongly believe that this book will bring disability to everybody’s door.
And one thing that I want to sum up with, which I always say flipping the coin with this is: we should start talking about disability openly with our children from home.
Why do I say this?
I always use the poop scenario: that we all eat. We all drink. And everybody knows that. But nobody wants to talk about poop because it is not nice, right?
We should start talking about disability like that. (Also, I’m not comparing disability to poop).
But it should come freely to children to know that there is something like that. That one thing is they will also have it at any point in time. We make sure that we clarify for them that you just don’t know which one you will have, and you don’t know when you will have it. But the reality is you will have a type of disability before you die, if you live long.
If that conversation should be there in the house, I think stigma, discrimination and all the structures laid down will be dismantled easily by the new generation. Thank you.
Jesse: And I’ll say on a personal note, having having been reading your book for the last couple of days at my home, I have two young boys that are getting into books on their own, and they were very curious about what I was reading and your your your picture is on the cover.
And they wanted to know who who is this person and what is the book about? Most importantly, are there pictures? So they love the pictures. Thank you for including those. But it was a great opportunity to talk with them about disability in a much more natural way than, you know me trying to give them the textbook version or a teaching moment.
Jesse: This is Jesse again. It’s just such a personal memoir that you shared. I’m thrilled to hear there’s more coming. You use it several times in the book. So I’m so thrilled to hear that you have a title and then you’re working on it. But I will remind folks, this book is called I’m Able: A Woman’s Advice for Disability Change Agents. Thank you, Sefakor. Be well, everyone.