Being Black & Disabled: A Researcher's Perspective

Joeita Gupta:
I'm Joeita Gupta, and this is The Pulse. We know that the disability community isn't a monolith. We also know that the lives of racialized people with disabilities are structured by race, socioeconomic status, and of course, ability. While there is no shortage of personal accounts, each story more compelling than the last, there is still very little research and policy work on the lived experience of people with disabilities, who are also people of colour.
Research is important. It often forms the backbone of policy decisions and funding distribution, so it is imperative that research into the disability community of colour remains accountable and grassroots. Today, we discuss the research aspect of being Black and disabled. It's time to put your finger on the pulse.
Hello, and welcome to The Pulse on AMI-audio. I'm Joeita Gupta joining you from Accessible Media Studios in Toronto. I'm sitting against a black background and there are some multicoloured squares behind me that's making up the background, and I am in a really comfy, cozy, blue sweater, which has a zip down the front, and my hair is, as always, pulled back into a ponytail.
I'm trying to bring you a couple of Canadian voices and perspectives on being Black and disabled in Canada. Last week, I was really delighted to have, as my guest, Tina Opaleke, and I hope you have a chance to listen to that conversation. Tina is the co-founder of Prosthetics for Foreign Donations, and she talked about her charitable work, but she's also an absolutely outstanding spoken word artist, and I'm a big fan of spoken word. It's like, I don't know, painting with your voice, it's poetry onto itself. It's such a beautiful art form that if you only have two minutes to spare and you want to spend two minutes listening to Tina Opaleke's interview, I would go to the very end of that conversation and check out her spoken word piece, because it was absolutely mind-blowing.
And so, I'm really pleased as well, because we have a terrific guest today, De-Lawrence Lamptey. De-Lawrence is the inaugural EMBARK scholar at the Holland Bloorview Rehab Center. He talks about some of his research at Holland Bloorview, he intends to establish READ or the Race, Ethnicity and Disability Lab. De-Lawrence also reflects on some of his previous research and why it is so important to have research that centers not only disability, but also race, looking at why those intersections matter not only in research, but for the communities that the research is meant to serve.
De-Lawrence makes a powerful case for remaining accountable to the people at the grassroots, and I am delighted to welcome De-Lawrence to the program. De-Lawrence, hello and welcome to The Pulse. I'm so glad you could speak to us today.

De-Lawrence Lamptey:
Thank you so much, Joeita, I'm really happy to be on your show, and I hope we would have a very good conversation today.

Joeita Gupta:
Oh, I guarantee it'll be a great conversation. De-Lawrence, tell me a little bit about what your role is as the inaugural EMBARK scholar. What is that program all about and what is it that you're going to be doing?

De-Lawrence Lamptey:
Yeah, so traditionally, a lot of Black scholars with disabilities like myself has always faced challenges in progressing in their academic career. And the EMBARK program was developed by the Holland Bloorview Kids Rehabilitation Hospital in collaboration with the Black Scientist Network at the University of Toronto, to be able to bridge that gap and then support Black scholars like myself, to help us advance in our careers in childhood disabilities.

Joeita Gupta:
I hope you don't mind me asking you a very personal question right off the top, but you said that Black scholars with disabilities face additional barriers, and I will extend the point a little bit and say that scholars who are disabled, but maybe who aren't Black don't face, and certainly scholars who are able-bodied and white don't face some of those same challenges. What are some of the barriers that you faced in your journey as an academic?

De-Lawrence Lamptey:
Yeah, some of the barriers I have faced in my journey is very complex, because one, I'm Black, and secondly, I'm also disabled. And these barriers are emotionally tough to describe, so what I've learned is to just be emotionally strong, focus on the positives, and then see the light at the end of the tunnel.

Joeita Gupta:
That's a really good point, because it can take a toll on you having to navigate the system being both Black and disabled. Now that you have this opportunity as the inaugural EMBARK scholar, what are you hoping to do in your new role?

De-Lawrence Lamptey:
Yeah, so my ultimate aim in this new role is to establish the Race, Ethnicity and Disability Lab, the acronym is READ lab, in order to mobilize students, researchers, and community partners to advance research in this area, that is needed to inform policy and practice, to improve upon the wellbeing of racialized children and youth with disabilities in Canada and across the world.

Joeita Gupta:
How much research is there on the experiences of racialized children with disabilities? Is there a lot of research out there that hasn't been collected or collated in one place, or is there in fact an absence of research into this community?

De-Lawrence Lamptey:
Yeah, so in Canada, research in this area is very lacking and a systematic review that was conducted by some of the researchers at Holland Bloorview, led by Dr. Sally Lindsay, shows that research in this area in itself is lacking, not just in Canada, but in many places of the world.

Joeita Gupta:
I couldn't help but notice that a lot of your research is based in Ghana and you're looking at interactions within the healthcare system and how people with intellectual disabilities are treated in Ghana.
How would you say some of that research applies to Canada? Are the contexts so different between Canada and Ghana that the research doesn't really translate over, or are there commonalities that you've found?

De-Lawrence Lamptey:
There are both differences and some similarities, and I can give you an example of either side of the coin. So, first, when we talk about similarities, people with disabilities all over the world have faced attitudinal barriers and systemic barriers, but in terms of how these barriers manifest specifically may be different across cultures and context.
So, in Ghana, many people with disabilities face cultural barriers in terms of cultural explanations of disabilities. So, some people in Ghana believe that disability is as a result of... Some people believe that the cause of disability is linked to spiritual and religious purposes. And so, for that matter, people with disabilities are discriminated against in that context, whereas in Canada, people don't necessarily believe that, or many people don't believe that disability may be linked to these spiritual and religious causes, but then people with disability also go through systematic barriers in terms of difficulties in accessing services and support to be able to improve upon your lives.
And it's very interesting that for many Canadians who see me as a Black person and as a Black immigrant from Ghana with a Ph.D., most of the time the first question they ask me is, "Well, there must be a lot of resources in Ghana to be able to support you to go through your education and then have a PhD, because not a lot of Canadians with disabilities are able to get their PhDs or even go through post-secondary education." And one of the things I tell them is, "Well, I hear you, and I'm not here to compare between which country has got the better resources or not, because everybody's experience is very unique and different. But what I hear from what you are saying is that perhaps Canada is not doing enough to support people with disabilities to be able to advance in their education careers."

Joeita Gupta:
You're doing a lot of work in the field of early childhood. How would you say Canada stacks up compared to a place like Ghana or other countries that traditionally are perceived as having relatively few resources for people with disabilities when it comes to the rehabilitation, care and support of youth with disabilities, particularly racialized youth with disabilities?

De-Lawrence Lamptey:
What I've come to realize in this world is that in places where there are a lack of resources and there are systematic barriers, people with disabilities are forced to compete with other people for the limited resources that are available.

Joeita Gupta:
That makes a lot of sense. De-Lawrence, what led you on your journey as a researcher and as an academic? You're a smart guy, you could have done anything, what is it about research and being a scientist that attracts you and makes you feel that this is something that adds meaning to your life?

De-Lawrence Lamptey:
So, I have done a lot of things. I was born with disability in Ghana, so I have right sided weaknesses, so paralysis linked to cerebral palsy, so I can't use my right hand, and then I walk with a limp. And growing up, going to school, I never really saw people like me in academia.
One of the things I resolved very early on in life, is to be able to give back to the disability community, because I've found that many people doing disability research are not necessarily disabled, so I wanted to be part of it. And I have done a lot of things. I have been a clinical psychologist supporting children and youth with disabilities in Ghana.
When I was in Ghana, I also served as a special education teacher to give back to the disability community. And then I also thought that research would be another tool that I could use to promote the lives of people with disabilities. Even in Canada here, I have served as the disability-inclusive development specialist for a not-for-profit organization that helps support kids and youth with disabilities and their families across Africa and other low and middle-income countries across the world.

Joeita Gupta:
That's really interesting. As I said, you've done so many things, and I dare say if you put your mind to it, you could do just about anything. But in terms of thinking about development work in particular, we know that a lot of money gets put into development projects and there's development that wants to uplift the conditions of women, development that wants to uplift the conditions of farmers, so on and so forth.
In the scheme of things, and based on some of your research, how effectively have development programs, would you say, managed to bridge the gaps between people with disabilities in places like Ghana and people without disabilities in those countries?

De-Lawrence Lamptey:
Yeah, I think that development work is very important in the sense that it helps support people who are most likely to be vulnerable in society. And so, as I said earlier, or let me put it this way, in places like Ghana, for example, where people lack... Can I rephrase again?
Yeah, so development work is very important in the sense that it supports the most vulnerable in every society and they actually go through different places where it's tough. So, in terms of relating it to people with disabilities, because a country like Ghana is considered a low, middle-income country and there are so many places that may lack a lot of the basic facilities that we have here in Canada. So, if a village in Ghana, for example, don't have access to school buildings, it's going to be very difficult for people to be talking about making accessible school materials for students with disabilities.
And this is where development work comes in, to be able to support the schools in difficult places or difficult villages, where they don't really have resources or they are under-resourced, to be able to have more resources or adequate resources to support the lives of people from all backgrounds, whether they have disability or they don't have disabilities.

Joeita Gupta:
In the last 10, 15 years of your research, you've done extensive research on a variety of topics ranging from, as I said, interactions in the healthcare system, looking at early childhood education, there was a fascinating study about the impact of college and university transition programs. There was this great one about the impact of pedestrian and transit training for people with disabilities. Given the wide scope of the research you've done, was there anything there that really took you by surprise?

De-Lawrence Lamptey:
Yeah, one of the big things that took me by surprise was that a lot of the research don't really collect racialized data. So, for example, with the sample, they would collect, let's say, age, whether the participants were female or male or gender diverse, but there is limited research in terms of how many participants were white, how many participants were aboriginals, and how many participants would consider themselves as visible minorities. And when I say visible minorities, it's a term that's generally used by the Government of Canada to refer to Black people, Chinese people, and people of colour, basically.
So, I was very fascinated, because I'm a Black person with disabilities and I asked myself, "Well, this research may be good, but then, to what extent are people like me or people with colour included in the sample?" Whether they are included or not, we can't tell based on the publications. And if I cannot tell, as a researcher, what it means is that there may be policymakers or service providers who may not be able to tell.
Let me say it again, so if I'm not able to tell as a researcher, then it's likely that policymakers or service providers may also not be able to tell how many people of color were included in this research, because we don't have that information. And that has implications, because what it means is that people may not be able to design policies or programs that may effectively address the needs of racialized people like myself. So, I decided that, well, I need to be able to lead research that will specifically address this gap in the leadership.

Joeita Gupta:
De-Lawrence, why do you think this gap exists? Why is there a reluctance to openly talk about race or ask about race when we're conducting studies and doing research?

De-Lawrence Lamptey:
Yeah, it's very complex. There are so many reasons why these gaps may I exist. It's possible that researchers may not have been that interested in collecting race data as part of their demographic characteristics when they collect research data.
And then it's also possible that many racialized people may not want to participate in research, because the person who's collecting the data is actually a white person, who they don't really identify with. And given historical attention between racialized people and non-racialized people, it can be very difficult for many racialized people to actually open up to somebody who's not like them, so I think that the process of data collection can be a factor.
And I feel that when somebody like me, a racialized person, who is Black, approach another Black person to explain my research and to help them, let them know that the research is to help the community, they are more likely to open up to me and give me the data that I need, the information that I need, or let me put it this way, when people like me who is Black, approach them to collaborate with them, to do research with them, they're more likely to open up and to collaborate with me, compared to somebody who may be white.

Joeita Gupta:
You make such a great point. Years ago, I read a book about research methodologies and how to do research within indigenous communities by Linda Tuhiwai Smith, and in that book she talks, and I'm paraphrasing the book, but she talked about how it's really important when researchers are working within indigenous communities to remain accountable to the indigenous communities, to give them some latitude to shape the research question to, at the end of the day, come back and share the findings with that community.
How important is it for you as a researcher who is Black, and as a researcher who's disabled, to be accountable to the participants that you're working with and collaborating on and how do you achieve that accountability?

De-Lawrence Lamptey:
Yeah, so as a researcher who is disabled, my aim is to be able to do whatever I can to be able to improve upon children with disabilities across the world. And I wouldn't want to see my papers just published in journals that a lot of people with disabilities may not even be able to access, so I'm open to using other non-traditional means to be able to get my research into the hands of the people who really matters, including people with disabilities and policymakers and then service providers.
So, one of the key ways is to sit down with the community and then find out where they access their information from, and how they would want the information to be delivered to make it more accessible to them. And then secondly, I wouldn't want to consider myself as an expert, because as a Black researcher from Ghana, one of the things that really fascinates me is that I have lived with disability for most of my life in Ghana, and yet I am not considered as an expert of my own lived experience.
And then, a white person comes from Canada, goes to Ghana to study about disabilities, and all of a sudden the person is an expert in disability issues in Africa. And I wouldn't want people with disabilities to consider me as an extreme expert, I just want them to see that we are all on the same level, we all have different experiences and we all have different talents and abilities that we are bringing on the table to serve and improve upon the lives for everybody and make our world a better place.

Joeita Gupta:
Well, you said that so well. I could wrap it up there, but I know you said you don't want to be considered an expert, but you are the inaugural EMBARK scientist, and you talked earlier in our conversation about setting up the Race, Ethnicity and Disability Lab or the READ Lab. Tell me in the next couple of years where you're hoping to take your research and what your research focus is going to be?

De-Lawrence Lamptey:
Yeah, so in the last couple of years, I would like to see enough data, enough research focusing on race and disability, that the government and clinicians and community have got enough data to work with, to plan policies, to plan programs, to improve upon the lives of people with disabilities all over, including racialized and non-racialized people with disabilities, and I also want to see the continuation of innovative research that's improving upon the lives of people with disabilities, not just in Canada, but internationally.

Joeita Gupta:
Those connections are so important. De-Lawrence, thank you so much for speaking to me today, it was a pleasure to have you on the program.

De-Lawrence Lamptey:
Thank you so much, and I enjoyed my time with you.

Joeita Gupta:
De-Lawrence Lamptey is the inaugural scientist in the EMBARK program that is a part of some of the wonderful offerings from Holland Bloorview Children's Rehab Center.
Well, we're almost out of time today. I have to say that De-Lawrence has given me a lot to think about in terms of remaining accountable and thinking through some of the complexities of doing research as someone who is Black, as someone who's an immigrant, as someone who is a person with a disability, not just the challenges, but the real genuine desire that you heard, where De-Lawrence says that he wants to give back to the disability community. I know I'll be thinking about this interview for a very long time, and I hope that if you have thoughts about the conversation I just had with De-Lawrence, you will reach out to us and share your thoughts.
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But this has been the second of a couple of shows dealing with different perspectives of being Black and disabled in Canada. You heard from Tina Opaleke and her perspective as the parent of a child with a disability navigating the healthcare system. And today, we were delighted, of course, to have De-Lawrence Lamptey with us talking about the challenges and opportunities of being a Black-disabled researcher. We'll also be bringing forward an advocacy perspective, so I hope you'll look for that in a future program. But that's all the time we have for today. We've got to wrap up. It's been great to be with you today.
The videographer for this episode of The Pulse is Matthew McGurk, Ryan Delehanty is podcast coordinator, Mark Aflalo is technical producer, and Andy Frank is the manager for AMI-audio. On behalf of everybody here, I've been your host, Joeita Gupta. Thanks for listening, and enjoy the rest of your day.