Our dream is that every research team is prepared to have researchers on the team who feel included and valued. Our blogs are one way that we are “keeping the dream alive” ✨. By sharing stories of the good things our team is doing, the ways that we are working toward this dream, it becomes more tangible to people.
That is why we are asking you to share your story. That is why we want to collect stories from every one of our team members, and over the next months, of many of our PIRL Network members. We want to show how each of us has gone the extra mile (the extra kilometer), made great contributions to the team, has made a real difference in the way that research is being done, and so on. Your blog is part of making our dream clearer to others – an important part. 📖💫
I attended the Voices to be Heard Inclusive Meeting which was held on the 19th of June at St Maurice Primary School in Kabwe Zambia. We heard experiences from everyone involved in the lives of children with disabilities, from the children themselves, the parents, the teachers, the counselors, physiotherapist, and other supporting organisations. Among the experiences that were shared one observation among the participants caught my attention, the statistic that almost 80% of marriages fail after a child with a disability is born in Zambia and in most cases the men are the ones that abandon their families.
Dr Mtonga, my supervisor explained that this was due to the garden concept, a tradition that is held by most people that the man is only responsible for planting a seed and the woman is responsible for making it grow and so any problem that arises after a child is born is the women’s fault and responsibility. This tradition, which is somewhat unspoken but understood has led to many families breaking when a child with a disability is born.
This information worried me, and I thought that maybe some kind of re-education is needed to bring everyone together and get involved in the life of a child born with a disability.
Are there such traditions that exist in your country and if so, how do they affect people with disabilities living in your country?
What has been done about education in your place to bring people together?
I interviewed Mr. Gift Lungu a post graduate researcher at the University of Zambia researching on the employment of people with disabilities in common supermarkets. Mr. Gift is totally blind. I asked him on the challenges he faced during his research, in his response, discrimination came up quite often.
In Zambia it is common to see person who are visually impaired begging in the streets and this sad reality made it hard for Mr. Lungu to smoothly conduct his research as he was being mistaken for a beggar whenever he went to seek audience with the managers to collect data. They eventually would give him access but that was after thoroughly explaining to them who he was and providing evidence to support him.
The attitude people have towards people with disabilities especially these who are visually impaired is very disheartening to say the least. I thought that maybe giving people with disabilities who are unable to take care of themselves some basic means of survival would be the solution. I asked my supervisor what sort of incentives existed for people with disabilities in the country being totally blind himself. He mentioned of the social cash transfer and after examining it, we concluded that the money was not enough and only catered for a small number of people with disabilities.
Talking with Mr. Gift made me look into myself and examine some of the biases that I might hold that might make life unfair for others if ever I was in a position of power. It also gave me insist into things that I might take for granted like not having my intensions questioned whenever I sort for an audience with a person in power.
It is very heartening to see how researchers like Mr. Lungu continue to excel despite all the challenges that they face. Of Course, we would wish that such challenges did not exist in the first place.
What kind of initiates do you think should be put in place to chance the perspective most people have towards people with disabilities and most importantly get people with disabilities especially those who are blind off the streets?
My name is Mary Daka, and I will be a fourth year Civil Engineering student at the University of Toronto this coming academic year. Prior to joining the PIRL Project, I had no background on disability-related work or studies. I do not identify as someone with a disability. I became a research assistant for the PIRL project in September of 2021. Even though I had little to no knowledge on issues to do with Disability Inclusive Development research, I did not feel left out in the discussion I felt, and I feel included in the team.
When the opportunity to do an internship at the University of Zambia availed itself, during the summer of 2022, I was incredibly happy. I was looking forward to learning and understanding more on what inclusive learning and research looked like, particularly in Zambia. And to share what I had been learning through the PIRL Project with colleagues in Zambia. And for this opportunity, I would like to say thank you to the PIRL Project, and for the people at the University of Zambia for warmly welcoming me. I am truly grateful.
I have learnt a lot in the few weeks that I have been here. I have also been shown a world of assistive technologies that make the life of people living with disabilities easier. Thanks to Dr Mtonga who has been inviting me to see and learn more about these technologies, and how they are available in Zambia. I am also very humbled to be part of the relationship building between the PIRL Project and colleagues at the University of Zambia.
Food for thought:
I sat on a bench at the University of Zambia, waiting to meet my supervisor for the first time. I was sitting next to a student who I later found out was named Peter (name has been changed). I greeted him and when we begun conversing, I realized that he had a disability. He had a speech impairment and his body movements indicated that he had another condition. He looked young, and was very bright, as I could conclude from his field of study.
Being acquainted with disability inclusive learning from the PIRL project, I had a lot of questions I wanted to ask him regarding his experience with learning at the university. But I thought it would be rude to do so because I was not sure if he was comfortable talking about his disability to a stranger, and if at all he identifies as a person with a disability. So, I remained quiet, and later talked about the experience with one of my supervisors. How do you think I should have gone about engaging in a discussion with him regarding his disability and experiences at the university without making him feel uncomfortable?
Thank you for reading, and I look forward to hearing from you!
Verbatim theater on the 6th of July 2022. This will be the first hybrid verbatim theater (Online and in person) for the PIRL project and I will have the opportunity to facilitate the in person part at the University of Zambia. Feel free to reach out to me if you want to participate in it.
- Leonard Cheshire Disability (org): I had the opportunity to visit and talk with the Executive Director of the Leonard Cheshire Foundation Mr. Kamina Ng’uni on the works of the organisation in Zambia. The Leonard Cheshire Foundation is one of the pioneers of inclusive research in Zambia. Apart from Inclusive research, they also offer rehabilitation assistance to people living with disabilities, among others.
- Defeating Blindness Zambia: I witnessed firsthand the work Defeating Blindness Zambia in partnership with GrossCare Zambia Limited (GrossCare International – We Care) has been doing to raise awareness on assistive technologies that are available for people living with disabilities. In addition to raising awareness, they also provide access to such technologies in Zambia thereby placing the much-needed assistive technologies on the Zambian market. If you are a person with a disability looking to purchase some assistive technology to help make your life easier, you can visit their website and check what they have for you.
Summary: In early January 2022, I proposed that PIRL would not use the acronym PWD in our writing. This blog is about why I proposed the change. After a month of discussions, you might still see PWD in some of our work, as we do not have consensus about its use.
Language is always evolving, and good writing takes time. As we rounded up the year in late December, some of us were working on a paper about accessibility and disabilities. The lead author had used the acronym “PWD” or “PwD” to mean person with disability throughout the paper. As I read through, I realized that I had become uncomfortable enough with the acronym “PWD” to make comments and to ask for discussion about not using it.
So, we did have a discussion in that writing group. Some of the co-authors did not really see why I was raising this issue, while others understood it easily. Some explained why it should not be used in their own words. After a bit more discussion, we had reached consensus and agreed not to use it in that paper.
Then, in January, as our PIRL Team was getting geared up for a season of writing, I asked all of the members of the core team to also commit to not using the acronym in our writing. This time the discussion was a bit more complex and took longer. Several people on the team consider themselves a “PwD” as part of their identity, and it is used often in organizational documents and everyday work.
While some quickly supported not using the acronym, others talked about how the words and acronyms didn’t really matter, and that it was attitudes and social practices that we needed to address. They made the case that someone could use the acronym or not use it, and still have discriminatory attitudes that would prevent disabled persons from participating in society and living well. They also said that we should not spend too much time talking about this acronym when there was much more important work to be done.
These interactions made me think and re-think more about why I was making this request not to use it. We gathered information and explanations. Here are the main points – We thought you might like to know more about these discussions.
- Explicitly naming disability is important. There is a growing recognition that recognizing disability is important, and that society needs to talk more about disability issues, explicitly naming disability. For example, on Twitter, Lawrence Carter-Long (@LCarterLong) advocated for using the terms “disabled” and “disability”. His tweet was: “I use person-first language, identity-first language & community-first language in rotation, interchangeably, to honor the origins, intentions & evolution of each option. Doesn’t much matter where the words #DISABLED or #DISABILITY are placed as long as they’re used. #SayTheWord” – link. This discussion about naming disability also calls for people to not use euphemisms such as “special needs”.
- Spelling the words out in full is symbolic. Using the full phrase symbolizes the importance of seeing people in their fullness, allowing for space to be taken up by persons with disabilities. As Martin (@Martinsy) tweeted: “Please don’t use the acronym PWD. Address them in full, person with disability (or people with disabilities for plural). Acronym is used for clarity and space, so as to avoid long sentences; but this does not apply to people, especially marginalized and vulnerable groups.” https://twitter.com/_martinsy/status/1185373244234199040
Some people believe that using the acronym can subconsciously imply that people with disabilities should take up less space.
- There are many opinions about how people with disabilities are marginalized, and language can contribute. It is important to remember that people with disabilities are not a homogenous group, and they have a wide variety of experiences and opinions and social locations. People with disabilities experience many different forms of discrimination and oppressions, in ableist societies, due to their disabilities, compounded by other identities that are marginalized.
Spelling out the words in full can be seen as one strategy to address these oppressions.
- Language shifts and changes. Some people say – “We have been using this acronym for years, we are comfortable with it.” A response to this concern is that language is constantly evolving, and just because we have used a word for a long time does not mean we should continue using it. Comfort alone is not a good enough reason for not making changes. But it can be a good reason, in the midst of lives and spaces where there are many other changes and unpredictability, to not change.
- Other groups are usually not reduced to acronyms. Most other groups are not reduced to an acronym. In many places, such as lists in policies or in documents where other groups are mentioned, usually other groups are spelled out in full and not reduced to acronyms. We hear about older adults and senior citizens, pregnant mothers, and people who use substances. Often in these kinds of lists, it is only persons with disabilities who are described in acronyms. Yes, there are a few exceptions, such as the acronym PLWHA (or variations) that is used in the HIV and AIDS sector to mean a person living with HIV or AIDS – but maybe it is time to revisit that acronym as well.
- Community leaders are increasingly encouraging the use of full phrases, not acronyms, about disability. While the acronym has been supported by some community groups, large groups such as the WHO and the UN do not support the use of the acronym PWD. See, for example, these guidelines by the UN: https://www.ungeneva.org/sites/default/files/2021-01/Disability-Inclusive-Language-Guidelines.pdf. Several others are writing about this change as well. Here is one example from a group in the Philippines: https://www.cdp.org.ph/news-1/2017/09/25/pwd-or-person-with-disability-to-acronym-or-not-to-acronym
One of the most important questions is: Does not using the acronym change social attitudes and discriminatory behaviours? For the reasons stated above, some of us would say yes, it is part of a process of understanding how language can shift attitudes. Others, however, say that it doesn’t make that much of a difference – attitudes change in other ways, and use of the acronym is not going to make that change. Some say that it is another example of privileged pressure from Global North funders, and so grant recipients will do it to comply, but it does not really make a difference to their lives.
Some people in our group asked about whether they could use “special needs”. This topic warrants a discussion on another day, but the short answer is: please don’t use special needs.
In summary, while I initially proposed that PIRL would not use the acronym PWD in our writing, you might still see it in some of our work. We do not have consensus about its use.
Personally, I am going to steer away from using it.
As a group, some of us are gradually making this change away from using the acronym PWD but not everyone agrees, and some people will continue to use it. Like many other topics, it will be revisited and discussed.
We would love to have your comments on this topic – share below or write to us at PIRL@utoronto.ca .
On Knowledge Sharing and Communities Of Practice For Inclusive Development"
📌 Downloadable PDF version: Blog 6 – Louis Mbibeh – On Knowledge Sharing and Communities Of Practice For Inclusive Development
For over 6 years, I have been working with diverse groups of professionals in both low-income countries, Europe, and America in a variety of spheres. One of the key lessons I have learnt so far is that working together is more fruitful than not working together.
Growing up and working in a context where knowledge is sacred and knowledge sharing is not the norm, globalization has drastically turned the tides and broken the barriers. People are beginning to feel more comfortable sharing knowledge, sharing practices, learning from each other, shaping their ideas, and growing together.
This might sound so much like a myth in a context where nongovernmental organizations are in quest for funding and ready to protect their ideas as much as possible. In this context, knowledge sharing will meet with obstacles, such as protection of organizational interests, visions, and policies.
I was once told by a participant in a knowledge sharing workshop, “Louis, you do not expect that we share our visions here, what if tomorrow we find out that people are already implementing our idea?” There has always been this tendency of fear of the unknown and that people will steal their ideas.
Some people think they are the ones that started the idea, so no other person should take it up or can be better up than they are. For instance, you could hear statements like ‘we started disability inclusion’. Such thinkers fail to see that their vision is spreading if it is being implemented by other groups.
A useless idea will obviously die a natural death. Meanwhile, if your idea is going forward, then you should give credit to yourself and feel fulfilled. If the ideas propounded by great scientists were not propagated and further developed, the world will not be where it is today. The need for knowledge sharing and working together collaboratively is so indispensable nowadays that it cannot be over emphasized.
However, we do not think it is completely wrong to protect ideas and conceptions. There is the need for intellectual property rights to be respected and people must be recognized for the ideas and concepts they have developed.
For instance, recognizing Wenger’s contributions in developing the community of practice idea (Lave & Wenger, 1991, Wenger, 1996) does not stop you from innovating and going further with the idea and neither does it reduce Lave and Wenger ‘s point. Rather, using the concept of a community of practice builds on their ideas; the concept is propagated and developed further to be even more beneficial (Cockburn, Mbibeh & Awa, 2020; Okwen, Signe, Macpella, Mbibeh., & Cockburn, 2018; Pacholek et al, 2021).
There are people who conceive ideas, who can turn those ideas into measurable activities and goals, and who will implement them in varying contexts. All these people do have different competences and there is need to recognize them. They are all important. Once you do not want to express your conceptions in the most professional way possible, you might sit and say people have “stolen your ideas”.
Over time, learning and sharing knowledge in communities of practice has helped to break this myth of the shortage of ideas. We have experienced how people share their conceptions and how others help shape them into greater ideas permitting them to move ahead.
Others have been inspired by ideas that were developed or presented by their peers, and in doing so, the ultimate goal is met: improving the wellbeing of persons with disability and building a more inclusive society. I am thinking that there is no knowledge existing if it is not shared. There is no knowledge if others have not used it in varying ways, and above all, if it has not had any impact in the community and to humanity.
It is thus imperative for professionals to work together and to share knowledge and practices. It is imperative that we not just shape the idea but learn even more from others. Along with studying in schools, experiential and practical knowledge is especially important. It is easier to find this experiential knowledge within a context of a community of practice.
We each have important contributions to make to creating and using what is called “research”. No serious professional lives alone in a vacuum. There is need for networking, sharing, and self-building.
The PIRL Network provides a platform for those interested in knowledge and research about disability inclusive development to learn from each other and to grow in their profession.
- Cockburn, L., Mbibeh, L., & Awa, J. C. (2019). The GRID Network: A Community of Practice for Disability Inclusive Development. Disability, CBR & Inclusive Development, 30(2), 84–94. https://doi.org/10.5463/dcid.v30i2.838
- Lave, J., & Wenger, E. (1991). Learning in doing: Social, cognitive, and computational perspectives.Situated learning: Legitimate peripheral participation. Cambridge University Press. https://doi.org/10.1017/CBO9780511815355
- Okwen, M., Signe, J., Macpella, S., Mbibeh, L., & Cockburn, L. (2018). Professional collaboration for vision and healthcare in Cameroon. African Vision and Eye Health, 77(1), 10 pages. doi:https://doi.org/10.4102/aveh.v77i1.434
- Pacholek, K., Prostean, M., Burris, S., Cockburn, L., Nganji, J., Nadège, A. N., & Mbibeh, L. (2021). A WhatsApp community forum for improving critical thinking and practice skills of mental health providers in a conflict zone. Interactive Learning Environments. https://www.tandfonline.com/doi/abs/10.1080/10494820.2021.1890622
- Wenger, E.. (1996). Communities of practice: The social fabric of a learning organization. The Healthcare Forum Journal, 39(4), 20.
📗 Prepared and written by Dr. Louis Mbibeh:
Louis Mbibeh, Ph.D. is an independent, international researcher and consultant with more than 10 years of experience implementing research, evaluations, and development projects for national and international governmental and non-governmental organizations. He is a skilled project manager with in-depth experience implementing high-quality mixed methods research and evaluation projects in the fields of disability-inclusive development, inclusive education, disability, rehabilitation, health service delivery, communication, professional development, language development, and related aphasias. He has been the Coordinator of the Cameroon Baptist Convention Health Services Community of Practice Project known as the Groups for Rehabilitation and Inclusive Development (GRID) Network Project for the past four years. He was Lecturer with the Cameroon Christian University and is currently with the Bamenda University of Science and Technology. He is a consultant with the health promotion organization HEPRORG Cameroon. He has provided quality assurance in a wide range of research projects and participated in the development of many related projects for both national and international partners. He is an editor and reviewer in several academic journals and has a number of publications in peer-reviewed journals. He has attended and presented papers in a wide range of national and international conferences.
You can see some of our videos here: https://www.youtube.com/channel/UCR2n1RG_4sFU9F1-Eot2WFQ/videos
Feel free to ask any questions and to contribute to this blog.
📌 Downloadable PDF version: Blog 5 – Sarah Lima – The Power of Connectivity
For the Institute’s presentation on “Network Career Panel Q&A “How we got here,” I had the pleasure of moderating an expert panel on inclusive disability research for the 2020 PIRL Institute. The experience was new to me as a first-time moderator of a panel discussion. The idea for this student session was to create a dialogue around conducting Disability Inclusive Development (DID) research, especially for students.
Before the presentation, I asked myself: How will all the panelists provide us with new insights? As we began the panel discussion, it became very clear to me that everyone’s unique career story, despite differences due to their varying positionalities, heavily touched on the theme of connectivity. Their past decisions connected with a number of important milestones, and despite all the challenges they embarked on, they all experienced certain hurdles. The discussion’s ending brought us to reflect on critical disability studies, particularly drawing on work in Cameroon.
For Goli Hashemi’s work, she mentioned how she went from different academic trajectories and landed on the nuanced intersection of migration and disability studies. Drawing on her experiences with DID in Colombia, this often-overlooked intersection became a focal point for her study on the Hispanic community in Los Angeles, which led her to recognize the DID needs of diasporic communities. This new and unique connection was only made possible because of her time spent in Latin America and her previous work on disability legislation in Cameroon, along with her family’s earlier aspiration of her working in the medical field. Goli’s past experiences informed and complimented her research. This is thematically similar to Dr. Pedro Almeida’s discussion around cultivating community involvement in the diaspora, and how he was able to integrate his work in DID as an occupational therapist through his Latin roots as a Brazilian immigrant to Canada. Dr. Almeida used lived experience with his ethno-cultural community to establish a connection to his host country and to the diaspora. And through this conduit, he was able to navigate a new country, a new discipline, and create a new space in DID.
The need to branch out in one’s research is also shown through Daniel Boyco’s discussion around starting off with an interest in DID, and exploring different countries to further this research and ending up with a thematic focus in climate action. Yet, he infuses his work on DID in this new research area as a means of informing others that disability inclusivity is important for social and economic wellbeing, as is a healthy climate.
Dr. Ruheena Sangrar mentions that intersecting areas of interest to advance future opportunities is only possible if we acknowledge failure as a positive companion and teacher. In Dr. Sangar’s touchpoint, she discusses how her work in institutional care homes/ long-term care facilities, disability, and COVID-19 also created an opportunity to explore a new field of interest. This interest found her through a time where she had to acknowledge that opportunities did not have to be exactly what she studied or knew, but rather represented a chance to pivot into a direction that could incorporate other elements of her academic experience. She chose to take up something completely new because it was an opportunity that emerged from a place of difficulty and managed to endure honest conversations with herself about conquering unexplored terrains. This is similar to Dr. Louis Mbibeh’s story, which also mentions how his initial journey had him on the path to becoming a medical doctor. However, he soon realized that being a professor and a disability expert had inherent value, allowing him to instruct medical professionals on incorporating disability theory into medical practice.
People with different lived experiences partook in our panel discussion, and yet they all witnessed a long path of self-discovery, reimagining their goals and abilities, and new unnoticed potentials for research. These connections are not capsuled inside their past; rather, they are constantly informing their ongoing research. The power of seeing oneself as connected with their lived experiences and present conditions is important for informing one’s decisions, be it academic research or professional ambitions.
📙 Prepared and written by Sarah Lima, Graduate Research Assistant:
Sarah Lima is currently a Masters of Global Affairs Candidate at the University of Toronto’s Munk School of Global Affairs and Public Policy. She earned an Honours B.A. with Distinction at the University of Toronto and worked for the Centre of Global Social Policy (CGSP) in their Gender, Migration, and the Work of Care Project (GMC) as a research associate, and then at the faculty’s Migrant Mothers Project (MMP). Now, she is working with the PIRL Project alongside Dr. Lynn Cockburn and Professor Jane Davis by providing support for the PIRL’s research initiatives.