Understanding Disability Inclusive Development (Research)

Welcome to the first episode of the Inclusive Research with PIRL podcast. In this episode, we set out to understand what is meant by Disability Inclusive Development. On our panel, we have Dr. Louis Mbibeh, Ph.D., an Independent international researcher and consultant and Mr. Sama Chic, an advocate for the rights of persons with disabilities and the president of the Coordinating Unit of Association of Persons with Disability(CUAPWD) in the North West Region of Cameroon.

We discussed what is meant by Disability Inclusive Development, explored how it is or can be in research and why it matters. We also looked at the concept of ‘them’ and ‘us’ and how they are used when it comes to discussions on disability and inclusion.

For the full transcript please check out our podcast website:  https://inclusiveresearchwithpirl.buzzsprout.com/ 

Where to find us :

Youtube:  https://inclusiveresearchwithpirl.buzzsprout.com/ 

Website: https://oticlab.utoronto.ca/research-projects/pirl/about-the-pirl-project/ 

Email: PIRL@utoronto.ca

Speakers' Bios:

Dr. Louis Mbibeh is currently a lecturer at the University of Bamenda and one of the PIRL project coordinators. He is an international researcher and consultant with over 10 years implementing research, evaluations, and development projects for national and international organizations. His research works and project evaluations focus on inclusive education, Disability Inclusive Development, language development, health service delivery and others.  He is an editor and reviewer in several academic journals.

Mr. Chick Sama Fru is President of the Coordinating Unit of Associations of Persons with Disability (CUAPWD) in the North West Region of Cameroon. He is an advocate for the rights of persons with disabilities and focuses his energy on the inclusion of persons with disabilities in community-based activities, in schools, and in working environments. He has led advocacy missions to both governmental and non-governmental organizations recording key successes. He is a specialist in Braille and has been instrumental in transcribing examinations and texts from print to Braille. He teaches learners with visual impairments and teachers working in inclusive schools on how to use Braille. He has done many presentations in both national and international conferences on inclusion, especially of persons with visual impairment and of persons with disability in general.

Transcript

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Lesley Sikapa: Welcome to the “Inclusive research with PIRL” podcast, my name is Lesley Sikapa and I will be your host today. In today’s episode, we will be joined by Dr. Louis Mbibeh and Mr. Chick Sama to talk about Disability Inclusive Development. We will explore what It means, look at the different ways in which it is portrayed or seen in research, explore the role of people with and without disabilities and also talk about why it is important to take a Disability Inclusive Development approach in our work. Before we dive into today’s episode, I would like to remind our listeners that the full transcript of this conversation is available in the show notes linked below.

Without further ado, let’s get into it.

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Lesley Sikapa: So, hello Dr. Louis Mbibeh, hello Mr. Sama Chick and thank you so much for being here with us today, to talk about Disability Inclusive Development. But before we dive into the topic, I would like to give each of you the opportunity to briefly introduce yourselves.

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Louis Mbibeh: Thank you so much Lesley for inviting me, I am Louis Mbibeh, I am a lecturer at the University of Bamenda-Cameroon, I am one of the PIRL coordinators, PIRL is the Partnership for Inclusive Research and Learning, Thank you.  

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Sama Chick: My name is Chick Sama, I am someone with a visual impairment, and I am the coordinator of the Coordinating Unit of Associations of Persons with Disability (CUAPWD)  which is a network of all organizations of persons with disabilities in the North West region of Cameroon. I am right now in Bamenda and glad to be part of this.

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Lesley Sikapa: Thank you so much, I’m also very happy that you are here today. Thanks a lot for the introductions. So now, I think it's good time to dive into the topic for today's conversation, and just as a very broad introduction, I would like to invite each of you to basically share what this concept or this idea of Disability Inclusive Development means.

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Louis Mbibeh: Okay, Lesley, thank you for the question. Disability Inclusive Development as I can say is ensuring that all development stages and processes are accessible to persons with disabilities and that they are inclusive.

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Louis Mbibeh: We are coming from a background where development has been done at different stages, without considering the perspective of persons with disabilities or without including them in the process. So DID is coming up to say there is need that development processes and stages should involve persons with disabilities in the different processes. That is, the little I can say, for now, Maybe Sama can add.

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Sama Chick: Thank you, Doctor. I think you said it all, but maybe I come from another perspective to say that some time ago persons with disabilities stood up to say, or to use the slogan “Nothing for us Without Us” and that meant every discussion around disability issues should really involve persons with disabilities.

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Sama Chick: But I wish to say here that the most recent discourse is about “Nothing Without Us”. So, nothing without persons with disabilities and this gives a clear meaning of what Disability Inclusive Development is all about. So it's about development considering persons with disabilities as a part of the community, and so their own ideas their own contributions, need to be taken into consideration.

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Sama Chick: So Disability Inclusive Development simply says that in the angle of development, look at people with disabilities as one stakeholder who will make the contribution and make the development more, more useful to every individual in that community.

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Lesley Sikapa: Thank you so much for sharing your perspective or thought on what disability inclusive development is, and indeed “Nothing for Us Without Us”, as you said, or simply “Nothing Without Us”. And both of you spoke a lot about development processes not including, or should be including people living with disabilities. And now as most of us know, for any development initiative to happen, there is often this discourse around the importance of evidence, you know, evidence-based and that's where research comes in, so in this area of research as a development process on its own, what does Disability Inclusive Development looks like in research? 

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Lesley Sikapa: Like, how is that, how do you see it happen in research? How should it be in research? and I would like to invite Mr. Sama Chick to share his experience first.

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Sama Chick: Thank you, Lesley. You know, just like you said, research is one area that informs development and research brings evidence of some past experience, probably in one environment over another and Disability Inclusive Development and if we come from the angle of research says that we should do research with persons with disabilities, for persons with disabilities and by the persons with disabilities themselves.

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Sama Chick: it's going to be a very good practice, which is, I must salute the efforts that the Partnership for Inclusive Research and Learning is doing, ensuring that persons with disabilities are part of every process. It may not be very perfect, but it is going to be very rewarding that the ideas or the contributions of persons with disabilities are considered in looking at accessibility in the research, at information gathering in the research, in looking at those specific things that meet the needs of persons with disabilities. 

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Sama Chick: And so research becomes very practical when those to whom, and for whom the research is going to help are involved in the exercise in itself and it is going to inform a lot of good practice and it's going to be useful, even to the people, because when they take part, or when their peers know that persons with disabilities themselves were part of the exercise, they tend to value the results and to value the resources that come out from this research exercise. So if we turn it the other way round disability inclusive research is really the way to go for developments to be well informed and sustainable Thank you.

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Louis Mbibeh: Sama has mentioned, and has elaborated really, on, on what Disability Inclusive research should be. You know before we have been doing community research for those in the community, without including them, and even when we want to include them previously, it has been to make sure that they are respondents so that we will be thinking that we are taking their perspective.

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Louis Mbibeh: It was good, but not perfect because once we involved them in the processes, you remember when we were talking about defining Disability, (DID). So with Disability Inclusive research, we include persons with disabilities in the different processes beginning from conception, What is the research all about? and how, what are the different processes? How will data be collected and how will it be analyzed? So when we involve them in the different processes, we have discovered that it becomes more fruitful than just doing it for them and thinking, thinking in their position.

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Louis Mbibeh: But when we include them through the thinking process right to dissemination of the findings, we will understand that there are different ways and better ways that this research can be done and disseminated, rather than us thinking alone. And experience has shown that, when we researchers sit and think the processes without involving community members, without involving persons with disabilities themselves, we discover that at the end we could take a very lengthy and very expensive process which will yield no fruit, whose results will not even be accepted by the community.

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Louis Mbibeh: But when the community sees that they themselves are part of the process, they will finally buy the process at the end, and research will be more fruitful to the community than when we just do it on our own.

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Lesley Sikapa: Indeed, indeed. Thank you so much for sharing that and, from what I hear it's very much of like, including people with disabilities, not just as the participants, but also as the researchers, the people collecting the data, the people analyzing the data and also both of you have really highlighted this notion of including from the start, but also including in every single step, rather than just choosing at what stage to include people with disabilities.

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Lesley Sikapa: That's really great. Thank you so much, and I did want to follow up on something that Mr. Sama briefly mentioned, and it was, and I think it's mostly, just to clarify something for the people who will be listening to this.

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Lesley Sikapa: While sharing what DID looks like in research, there was this huge focus on making sure it meets the need for people with disabilities. Just as a clarification, does that mean that the DID research has to be only research that is focused on addressing the needs of people with disabilities? 

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Sama Chick: Well, thank you so much. Well, I, it's, it's not all about, Disability Inclusive research doesn't mean everything discussed must focus directly only to issues concerning persons with disabilities, but it says that whenever the processes are carefully thought of involving persons with disabilities, their needs will be met in the sense that you think about accessibility issues within the research process.

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Sama Chick: So you may even be talking about research in agriculture, we may be discussing research in transportation, research in whatever topic which is a developmental project, topic, but it says that, when the processes include persons with disabilities, then it goes a long way to meet the needs of persons with disabilities in terms of the research process but also considers the needs of persons with disabilities at the end result.

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Sama Chick: So, even if it is agriculture, persons with disabilities are members of the agric family and so their needs also need to be considered.

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Sama Chick: If you're talking about transportation, people with disabilities, use the transport system, and so we need to look at that, but that is not seen when someone with a disability or someone has a disability-focused eye will not see this.

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Sama Chick: But when you get involved the persons with disabilities themselves, they highlight. Remember disability is a cross-cutting issue. Maybe I remember remind our listeners that a billion and a little above of the total world's population is made up of persons with disabilities and so there's no way we can do any good practice in any developmental issue without considering persons with disabilities and their specific needs, thank you.

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Lesley Sikapa: Thank you so much for adding that clarification or providing more context to that and, indeed, DID is very much about including, like in, like in every processes. In as much as we may not think from the start that this is relevant to people with disabilities, as you said, there is a huge population of people with disabilities, and they also need to use transportation services. They are also part of the agricultural sector.

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Lesley Sikapa: And any initiative any processes that is made should also take into account what would that look like what would, how will this be experienced by the person with disability and from what I’m hearing the way to go about that, to make sure that people with disabilities, are able to, I guess benefit from any initiative, any process is to make sure they are included in the process, while it's been designed.

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Lesley Sikapa: So I will want to move on, and I noticed as part of the conversation and I guess also from knowing the both of you, when Dr. Louiss is talking about DID he used the word “them” right, and I’m guessing it comes from the point of you not being a person with disability versus when Mr. Sama Chick is talking about it, he uses the word “us” as someone who identifies as a person living with disability.

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Lesley Sikapa: So, I would like to know when thinking of engaging in DID research, what is the role of people without disabilities? And what is the role of people with disabilities? 

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Louis Mbibeh: That's a tricky one and one of the things that we even avoid is the issue of “them”, and the issue of “us”. So when we, when these words come up, they are, they are natural and the tendency is for us as community workers to use such terminology especially, only when we want to precise certain things and to know that every human being is the same, despite the different difficulties that different people can face at different times, the different impairments that we can have. There is one uniting factor, which is the fact that we're all, we're all humans.

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Louis Mbibeh: So in this process, there are people who do not identify as persons with disabilities and to make sure that we are, we are all on the same plate, there are, there are things that person without disabilities should do to make sure that the processes are inclusive.

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Louis Mbibeh: In fact, they have to be intentional, I mean people without disabilities, must be intentional, because if they are not intentional, then the process, things, will not move because somebody will say “after all, I’m okay with, I don't even need, want this to be accessible, I can do it.”

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Louis Mbibeh: And when you think inclusive, you will know that you are not alone. Even within the community, of people who think that they are people without disabilities, there are still different challenges that we need to consider.

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Louis Mbibeh: So, it's the role of persons without disabilities to be intentional about inclusion, to actually decide, because if you don't decide intentionally that you are going to make sure processes are inclusive, then they will not be, so we need to continue to encourage and to sensitize those without disabilities to be intentional about inclusion. 

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Louis Mbibeh: It cannot come naturally, because the natural way for persons without disabilities is to just do their thing, with the conception that everybody will have the same capabilities like, like, like them, but now for inclusion to take place, there is need to, for us to be very, very intentional. 

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Sama Chick: Thank you, Doctor, for, for throwing that light. Just to add that, their roles are just as equal as whatever assignment is placed in front of them, in whatever research committee, or research program, or research department.

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Sama Chick: You know in usual cases, it’s easier to answer this question by saying that the person with disability is playing the role of giving advice on how to treat persons with disabilities or how to handle persons with disabilities, and especially in the context of low-income countries or under-developed countries, where I am talking from, or we are talking from, you’ll realize that such research teams will mostly be led by people or persons without disabilities, for, for reasons that are obvious that we don't have too many persons with disabilities, who have reached a certain educational level, but also that assistive technologies, I never just very available in the community, so it makes it difficult.

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 Sama Chick: But it's also good for, for everyone to look at it from the, from the broadest perspective to say that, the teams giving a research opportunity for someone to lead, maybe on two ways, maybe a person with disability, maybe a person without disability. And so the role of the person with disability may not just be looking at persons with disabilities within the research but actually leading a research team, whatever the topic is.

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Sama Chick: And so, everybody is in the team, first of all as a researcher. That's, the first thing, secondly, just like Doctor said at one point in time, everybody has challenges in one way or the other. And so, each other, one person is looking at different challenges the other looks at it considering disability,  considering language, considering different types of things, what about even age groupings? what about gender issues? all of those are challenges that need to be handled.

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Sama Chick: But once we are intentional, I, like the word Doc uses about intentional. Once we're intentional on being disability inclusive,  it means that whether it is the person with disability that leads, or he is the assistant, or he participates in one way or the other, he is considered, his contribution is considered like a research member or member of the research team, and not because he's a person of disability, and so the roles are just as equal, as defined in the team, where they belong.

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Lesley Sikapa: Thank you so much, and a have to say I really like this term, “being intentional about inclusion”, giving space for people with disabilities to be much more than just advisors, but also make space for them to be leaders as members of the research team, is very much, really falls under that idea of being intentional. 

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Lesley Sikapa: And just to quickly round up, I just wanted to invite both of you to share final takeaway in terms of: Why should people care? Why should people pay attention to this idea of Disability Inclusive Development? 

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Sama Chick: Thank you, Lesley, I just want to remind our audience, that the disability population of the world, forms the biggest minority. And if every time we talk about protecting the rights of our minority population, then the number one population to protect is the population of persons with disabilities.

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Sama Chick: And so there is no way we can leave or carry out activities in a world with persons who form way very close to 20% of the total world's population and ignoring them.

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Sama Chick: I, I daresay that it’s just the right way to go, it is the best way to go, it’s good practice, and this will inform a lot of useful things out there if we go by disability inclusive research. It will avoid waste, it will make things much more cost-effective. It will be useful for everyone, as we say universal designs are good for everyone and not only persons with disabilities, thank you.

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Louis Mbibeh: Thank you for this discussion, Lesley. As a researcher I’m saying that research is only, research can only be practical, can only be useful if it meets the needs of the community. Once we do research that is going to remain in the shelves, that is not practical, that is not going to help the community in any way, then we are not doing anything. So disability inclusive research is the way. It is the way forward because it involves everyone. It Includes persons with disabilities and every other community member in such interesting ways that we cannot imagine. 

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Louis Mbibeh: So this is the way to go for research, in any domain of research, that we should include persons with disabilities, we should include community perspectives so that the research findings will be useful to the community and it will improve the world in which we live.

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Louis Mbibeh: But if we keep that aside, then we will be dancing in the same spot, and we will not have changed anything through the research because we will be keeping, as Mr. Sama said, a good chunk of the population aside, which therefore will not be universal.

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Lesley Sikapa: Being intentional about including people with disabilities, Inclusion from the start and in every step of the way for more efficient and impactful research, “Nothing for Us Without Us”, or better again “Nothing Without Us” are definitely some of my key takeaways from today’s conversation. Thank you once more, Mr. Chick Sama and Dr. Louis Mbibeh for sharing your insights and thank you to everyone listening to today’s episode. What are some of your key takeaways from this conversation on Disability Inclusive Development?

Please be sure to check out our show notes for transcripts, biographies and other resources and remember to follow and subscribe to our podcast on your favourite podcast listening platforms. 

If you have any questions or would like to join the PIRL network to stay up to date with our work, feel free to reach out to us through our email address Pirl@utoronto.ca.

Take care and Bye for now!

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