Research Ethics Workshop
Feb 1 2024
Dr. Suzanne L Stewart
She is a registered psychologist and Director of the Waakebiness-Bryce Institute for Indigenous Health at the Dalla Lana School of Public Health at the University of Toronto (U of T), where she is a Professor in the Division of Social and Behaviour Health Sciences. She holds the TC Energy Research Chair in Indigenous Health. Research and teaching interests include Indigenous health and healing in psychology (homelessness, youth mental health, identity, and work-life development), Indigenous determinants of health, Indigenous pedagogies in higher education and health sciences, and Indigenous research ethics and methodologies. She is committed to advancing Indigenous healing issues in academics, health practice, and policy.
Abstract
This online/virtual workshop is for academic researchers. This workshop introduces and demonstrates key issues and ideas in First Nations, Metis, and Inuit research and ethical frameworks that places health research in the center of community, cultural identity, and historical realities of various Indigenous Peoples in Canada. There is a myriad of issues, including fraud, data sovereignty, data governance, consent, and leadership. Experiential activities will be included. Learning objectives are:
· Understand how colonialization impacts the ethics of academic health research and what the issues are how they can be addressed in methodologies.
· Learn ways to stop using research that harm individuals and communities by sharing concrete examples of ethical procedures; and
· Learn tips for successful academic REB applications for FNMI health research.
So here we are to do our research ethics Workshop today and workshop means that it’s interactive and we will be discussing uh soft and hard skills about uh research ethics when doing indigenous health research so I just want to acknowledge myself uh the land that I’m on um I’m
From the Yellow Knife Denny First Nation so I I’m a longtime resident and worker here in hodon and annabi territory and I just want to acknowledge that the land that I live work and play on I’ve raised my children on um it is annabi and hodon
Uh peoples have been here for for since time in Memorial and I just want to acknowledge that I’m in relationship with them and this sacred land and how grateful I am and how much the people in the land have given me in my family and without the generosity of the people
Here and what the lands have to offer I certainly wouldn’t be here doing this work and I’m very grateful for that so Massie Cho and I always Endeavor to work in reciprocity um with with those gifts so Massie Cho so I know um you know as academics
Were taught to Define terms and I just want to start out by uh you know everyone here’s the word indigenous that’s the word that that’s been used politically the last few years uh by the government and you know where we’ve come to realize that it’s really important is terminology means something
And uh you know indigenous is this blanket term that’s been used to refer to the status and non-status uh First Nations People Mate peoples and original peoples from the circumpolar regions uh in Canada they they call them the Inuit although that’s not even really the correct term by uh
By Inu people’s um languages uh and Customs um we’re really I’ve been schooled to move away from these blanket terms because having these blanket terms really does not adequately address the distinction based cultural identities that exist in Canada so I’m moving away from using a blanket term like indigenous and actually outright
Stating First Nations matey and Inuit people instead of using the word indigenous and in fact when we’re talking about uh people we should really be referring to People based on specific band Nation culture Community affiliation so just to let you know that terminology for me is moving away from
Indigenous to uh First Nations mate te and Inuit peoples um for that reason is because we need to stop uh um colluding with government forces who are trying to take away our identity by giving us these blanket names oh I’m indigenous well what does that really
Mean not really a lot oh I’m den oh I’m Yellow Knife yellow knives Denny that means a lot more to understanding who I am and what I bring uh bring to uh to relationship so the international context let’s start there uh so according to the United Nations there actually a lot
Of indigenous people from different groups across the world in over 70 countries all of these groups with unique Traditions cultures uh social and political and economic uh characteristics that are distinct from the dominant Societies in which they live and in Canada according to the most recent census there’s over two million First
Nations uh mate and innuit people living within the colonial context and that more than half of these people our people are living in urban environment ments with youth being the fastest and laring largest demographic of any population within the country so so that’s significant and that’s important to consider the other thing
That’s important to consider when we’re going to talk about research ethics with First Nations mate and Inuit people is to not only consider who are First Nations main Inuit people how many of them are where are they situated within the global context what is the background well for all First Nations
Mate and Inuit people across Canada there is a colonial history and current Colonial context that heavily impact what it means to do research and so that’s really about understanding that First Nations main Inu people have experienced multiple Colonial aggressions and assaults that have been very personal and invasive in
Nature so for instance education child welfare Health Care segregation and research have been very specific sites of of colonial harms when I say Colonial harms meaning that these have been systemic they don’t that it’s not these personal harms that happen and those do happen but it’s about that there’s
Policies and laws that have been created that have been harmful to First Nations mate te and Indigenous people that that create personal harms today research and education and I’m talking about postsecondary education continues to be sites of systemic and personal oppression for uh First Nations M and
Inuit peoples or we could say fnmi to shorten that that long mouthful and I put a happy picture here because you know we continue to uh to to block aome and grow and not only survive but to also Thrive uh despite this colonial context that we live
In so how did this happen some of you may wonder I mean most people here probably know but some people don’t know that these oppressions and these systemic harms stem directly from federal legislation that’s what started it all in 1876 and it was started because when Canada as a colonial
Federal country was begun um the people the British and the French who were starting who were forming legally you know forming the title of the country and all the things that they did by their Western Colonial system their British system and French system said oh well there’s already millions of people
Living here the Indians and we need to legally get rid of them because we need to act access their land and their natural resources that they have even though indigenous First Nations people did not have ownership of land uh in in their culture or their infrastructure way of of living in in their
Societies the Canadian new government decided that they needed to create a law that would get rid of all these people who were already there in order to build the new country so they created a a policy called the Indian Act that had a whole bunch of laws in it um that that
Really had had one goal and that was the goal of uh Exterminating the population of First Nations mate and innuit people in order to gain unfettered access to the land and natural resources needed to build the country so many of these policies have changed or been um removed many of these
Policies are still in existence and the goal of the Indian Act was really to exterminate the population either through assimilation or death so put everyone uh in places of extreme um deprivation you know Indian reserves where they they wouldn’t be able to thrive or have them force them to come
Out and assimilate into dominant Society through child welfare through residential schools um through disenfranchisement uh that sort of thing so you can go and read up on the Indian Act and it would take a long time to really understand it because it’s so big and its impacts but to when we’re
Talking about health and that’s where I’ve been working um for the last 25 years you know it’s been well substantiated in the literature that colonization has influenced aspects of Health in all First Nations mtin Inu communities and are linked to high rates of mental health physical health education and employment
Challenges physical and mental health traumas on fnmi peoples uh are actually rooted in these attempts at cultural extermination and cause deep set pains in regard to uh indigenous identity so healing and health promotion from The Acts of colonization and the harms perpetrated by it have been occurring through reconnection and relationship
With current uh traditional knowledges and that includes through the use of research so you know one of the greatest harms of colonization and and this that has been that has happened through the enactment of all this uh legislation has has been to interrupt the flow of and the transmission of traditional
Knowledges so traditional knowledges in terms of how to be healthy how to live how to parent how to be in society how to relate to each other how to relate to cosmology how to relate to the environment how to relate to spirituality all of these things uh have have been interrupted
Through colonization which essentially made first nations may te Inuit cultures and ways of life against the law so so so it’s only natural that as a result of that there would be a lot of physical and mental health harms and traumas um that that we can begin to address
Through that reconnection with knowledge and relationships with that knowledge through people and other things so another thing that is talked when we talk about the colonial context is this concept of intergenerational trauma and everyone talks about it it’s a well-used word now in in society in Canada when we talk about the indigenous
Context and you know there’s intergenerational trauma and and there’s the original trauma so the intergenerational trauma just to explain it in concrete def defining terms is when an original trauma is transferred to subsequent gener generations of people through biological physiological psychological environmental and social means and that really results in this
Cross-generational cycle of trauma I mean it we’re talking about it with people but it also happens with animals it happens um with plants uh it’s it’s been substantiated in the Western Scientific data is real and we know that it’s there from blood memory so the impact of a stressor on that acute or
Original trauma is influenced by the person’s experience and environment and we also need to consider Collective trauma in the context of a group or Community shared stressors and experiences and I know that sounds abstract but our research team has made this great little interactive model to show you how intergenerational trauma
Works so when a a trauma happens to a person how they manage and cope with that trauma is based on what happens in their environment their personal experiences the history of the group the social group that they belong to and these are all mediated by factors like vulnerability and the presence of
Environmental stressors for new traumas risk that accumulates across generation for more traumas to happen uh unhealthy coping strategies that are modeled intergenerationally um historical events that continue to undermine the well-being of the group and chronic exposures to ongoing traumas such as racism uh violence U murder um
Addictions uh suicide all these types of things that so so these are what what mediate and perpetuate intergenerational trauma um ongoing traumas can also be harms from research um racism in school uh all of these things so so you can really see how these all work together
Now this has been the way of thinking you know when I came to be a student so I I first went to graduate school around the turn of the century so I think it was 2000 or 2001 and at that time this type of information was not known or accepted
Outside of indigenous First Nations mate in communities uh in the academy uh there was uh literature and data that blamed indigenous people for their health problems um didn’t accept any connection between Colonial history and current Colonial uh acts as impacting the well-being of indigenous people and this
Was not thought of it all then as the TRC came onto the scene and the government was forced to acknowledge and take responsibility of this forced through the international charges of Human Rights abuse through residential school by the United Nations um this type of idea of intergenerational trauma
As being a factor and a real thing that happened to First Nations mate and Indigenous people became prevalent that’s when I and my research team developed this type of thing to help people understand and be educated about what happened how it affected us how did residential school how did the 60s scoop
How did living on a reserve affect people and this was created uh I think this was created probably about 15 years ago this intergenerational trauma model that I’m talking about to explain it well now we’ve moved beyond that and we’ve moved Beyond to no longer wanting to focus on intergenerational trauma we
Because that really comes from that deficit lens we want to focus on intergenerational wellness and you know what it actually I start to cry when I think of this because this comes from our communities who don’t want to only be identified as people living with intergenerational trauma that’s not what
Defines Who We Are that’s not who we are we’re people who live in continuous healing and strengths that are based in cross-generational education about the colonial past and present cultural interventions like traditional teachings and healing activities like having our Elder as part of our research team and you know I see
In the in the participants that a number of our traditional knowledge Keepers and Elders who are on our research teams are here today part of this and that’s what I’m talking about and having healing interventions for individuals and communities that are based in traditional knowledges healing as well as in Western culturally safe
Interventions and so this definition of intergenerational Wellness really comes from the pillars of healing that lead to resiliency that were published by the Aboriginal healing Foundation um which is now gone thanks to the conservative government’s Cuts in the mid teens but that’s something we can work
On Reviving or doing even better um so so this has also been called by Community uh partners that I’ve worked with intergenerational healing intergenerational Wellness intergenerational strength um and this is an example of you using an indigenous you know a First Nations mate or or Inuit Paradigm that is based in a
Wellness lens in health and research instead of that Western Paradigm deficit lens of indigenous health so if we take the same model that we developed uh about intergenerational trauma and we looked at it from an intergenerational Wellness lens we would Place Wellness in the center of who we are not trauma
And we would see that res resiliency is fostered and developed by traditional healing and spiritual activities that access and use of culturally safe and wellness informed mental health and physical health interventions would be a factor that mediates our Wellness the community cultural events that continue to strengthen the wellness of the group
Also mediate and our Wellness and that healing and wellness accumulates across Generations when we focus on these things and that education about past and present colonization also strengthens and mediates our Wellness okay next slide hang on so given that this is sort of the context that we’re dealing with when we
Talk about First Nations M and Inuit research ethics what tools do we have well we have some great tools and if you’re doing indigenous research then I would strongly recommend that you read both of these books they will help you H use what we call indigenous methodologies so
This is a cre methodology research is ceremony and this is a sem all text in doing research methodologies uh by Maggie kovat so these are very important texts to read if you want to do a study and use an indigenous methodology so these are conceptual these are helping to
Decolonize your mind and give you an indigenous way of understanding research methods some of the key historical issues When developing research and enacting research that have occurred are that First Nations specifically have been the subject of two much research and the majority of that research that has been done is
Initiated uh uh paid for and carried out by non First Nations people who are from hospitals and universities as well as governments and that rese these researchers have selected subjects of personal or academic interest and disregarded first nation’s mateer Inuit priorities it’s safe to say that researchers in help uh particularly I
Mean across the board but I’m talking about health have really preempted meaningful Community involvement by presenting completed research designs often already funded for Community approval rather then collaborating with them from the start and governments gather administrative and other data from First Nations mate and Inu communities without their knowledge or
Consent this continues to happen and governments and researchers analyze interpret and Report First Nations m in data um without consent approval review or input by First Nations uh mateer Inuit uh Inuit Representatives still this has happened and it continues to happen and in many isolated not isolated
But in any reserved in many reserve and Inuit communities people have been actually led to believe that if they don’t participate in a research project they will lose their right to health services and researchers have not explained their studies in a language or manner adequate to ensure fully informed
Consent and we know that though in those cases it’s not because the researchers have these strong close relationships with communities and participants in which there’s trust to to give consent and identity and Community specific research has not been widespread and Concepts and practices of non-distinction based identity like indigenous Identity or sorry indigenous
Research has continued uh to the harm of specific identities so you know me meaning we’re doing research on a first nation’s reserve and then the conclusions of the data and the study are saying well all indigenous people are this based on First Nations Reserve data which does
Not apply to the rest of the people who don’t live on that Reserve or who were not from that first nation uh researchers have recklessly sensationalized problems among fnmi community without regard for the impact on communities or their social and political interests and you know I heard that just this morning on
The news I was watching the national news and I heard them talking about how a court case had been ruled on in violence on a First Nations Reserve in Saskatchewan and then they just had all these other people coming out and saying you know uh everyone has intergenerational trauma this this this
That and the other which may be true but that’s not the full story research focuses on problems without looking at the positive and has often portrayed fnmi people as poor sick dependent violent and childlike and that’s exactly what I saw on the news this morning so um let’s just pause for a
Second and let me come to the sort of conclusion about what has happened and what is happening with fnmi research and ethics and basically you know many uh indigenous researchers in ethics have come to the conclusion that when we use a western Paradigm of research and education for that matter with First
Nations and mate PE and Inuit people this is actually a form of continued Colonial oppression and it continues to perpetuate intergenerational trauma when we use indigenous methodologies ethics uh work with communities to do research we perpetuating and supporting intergenerational Wellness so we were supposed to go into
Breakout rooms to discuss all this but apparently there is an issue with zoom that is not allowing us to go into breakout rooms and I’m looking to see if I can if it’s been fixed and I can’t do that but um what I’d like to do is just
Get some Reflections from people on what’s been shared up to this point um because I really wanted everyone to process uh Roy can you come back how can people speak other than writing in the chat can we allow people to turn on their cameras and ask a question or make a
Comment okay let me work work on that just a second okay so maybe while we get Roy to do that if I could ask you kindly to write in the chat I mean the idea of this um is that uh oh she someone in the chat understands what’s going on says since
This is a webinar not a meeting all the functionality is disabled we may be able to change the functionality I don’t know um that’s why we have our our technical experts there um if you could just type any comments or questions in the CH in the Q&A while
We wait for Roy to to resolve this um then uh then we can go ahead but I would like to get uh some comments and questions feedback from the audience about under understanding the context of indigenous health research and the impacts of inter intergenerational trauma intergenerational
Wellness so I I don’t see any comments yet there’s a lot of people here over 60 so if if you have anything any comments please uh please put them in the Q&A so uh David Burman says I’m interested in Shifting the focus of decolonization to Regeneration from deficits to strengths your thoughts
Anyone want to comment on that someone says the amerus Schwarz the arrogance of the researchers is amazing uh I just want to thank you for this this is very validating I often feel very alone and frustrated working within the current uh mental health and community service sector with the
Western lens of illness and pathologizing people I’ve been trying to shift and share Wellness perspective for years but had no idea there were allies and Frameworks so well established it’s nice to I’m not alone thank you um as a new First Nations academic and researcher from an anonymous attendee can you
Suggest resources a place to start um templates Andor mentors Etc I don’t want to reinvent the wheel and I’d like to approach the research using wise practices uh apparently the participants don’t have access to the chat so I Roy is that how it’s supposed to be Roy’s
Working on that so I guess the participants only have access to the Q&A um I think another person Gigi saysi think the fact that research is being done without focus on what is needed wanted by the fnmi is insane and most likely being done using public funds Must Be
Stopped uh one more person I’ll read from Anonymous how do University ethics facilitate what suzan is asking for and might those be best required in any research that is asking to engage with indigenous peoples currently if the researcher is not publishing the indigenous unique guidelines are not
Required and I’m ready to be wrong on that that’s a good question uh last one I will read Michael Brown the deficit lens really worries me in terms of how indigenous studies are being taught in schools as my younger sister is currently taking IND digigen studies class in high school and I’m
Concerned that the narratives being taught are continuing har that were discussed so eloquently here today uh Gigi how can we ensure this stops uh sue lamir the work the research team has done is amazing uh Gan Mitchell steel reflecting on this topic I’d like to share is an indigenous social work on Healthcare
That when it comes to research consent is so vital and that consent can change during the research process also I see many non-indigenous researchers doing these Health re doing health research what are your thoughts on this and the last one because I don’t want to leave
Anybody out those of us from Marina for those of us in the Indigenous Community are aware of these issues and they have been widely reported in news platforms and social media why is nothing moving forward why is nothing changed oh G more keep coming one more I’ll read Monica
Gard I want to say Massy chill for all of this I feel a connection with coming also from YK Den First Nation growing up p and last one uh from David Burman also colonialism has been a tragedy not only for fnmi but for the health of Mother
Earth and hence for the survival of all of us we all need to be allies toward the eighth fire okay that is fantastic um thank you I love hearing that and I apologize that people can’t speak I was I asked to have this setup so we could put people into breakout
Rooms but that didn’t happen uh and Roy is saying now in the webinar chat but I don’t know it says only the host and panels can see that says I can allow individuals to talk and he’s going to let Pam Pamela speak so you can do that now
Roy I think Pamela can you can we hear you I can see you so you can see me and hear me and hear you yes y oh I didn’t mean to raise my hand or whatever but unmute does work but I didn’t have a question I was just
Here to listen to your great presentation oh but your hand is raised so that that that means you don’t have you don’t want to speak no I’m good thank you so much okay okay so Roy you could also bring everyone on to the panel I guess that would be
Another way to um but I don’t you could also bring everyone into the panel and that would allow them to speak when we get to the next question would that work you problem solve that and I’ll keep going so those were some great questions um and comments and you
Know the the thing is and and yes I I will be able to answer most of those as we go on um because there are some great resources out there and that’s what I’d like to do is you know I’ve highlighted how we got into this place what the sort
Of ethical issues are some of them with with indigenous health research and what what some of the resources are so the sort of Bible of ethical indigenous research would start with um decolonizing methodologies and this one on the left is what I read I think it
Was in the in 99 when I first found it and I felt like everything that I thought had been validated at that moment when I read this book now there’s a third edition um by uh Linda Smith and I would urge you to run out and read it and
Highlight and note as much as you can from it because this is you know what has really helped us to start to shift the Paradigm uh in in the institutions as far as research goes other responses to all of these problems that I’ve uh suggested are are
Issues have also come as starting in 2007 with the development of the what what are known as the oap principles ownership control access and possession uh of research that was developed by the National Aboriginal Health Organization and now has been taken over by uh
Fnc so if you Google oap or you go to this link you will get a copy of this and this is one of these guidelines that was developed in response to these program problems and issues to uh to manage uh the ethical harms of research to with First Nations m in communities
But more with it Aboriginal that was the blanket term back then then change to indigenous and as I said earlier we’re we’re trying to no longer use blanket terms so we want to say First Nations mate te or Inuit communities um so so this is one of those resources that can
Be used at a general level another General level resource is chapter n n of the tcps2 now that’s the Federal Government research funding granting agencies guideline for ethical research with indigenous people and you can you can Google that tcps2 chapter 9 was updated in 2022 I do have information
That the federal government that is the branch of the federal government that mediates this and that’s the cihr that from the tri Council of research is aware that this is out ofd and not relevant and needs to be updated they just have no idea how to update it and
People like all of us people here need to go to them and say you know what these are the issues and this is what has to be addressed and that’s what we’re going to do over the next few years hopefully um so those are kind of the oap principles and the tcps
To chapter nine are the two sort of national guiding Frameworks for ethical research with indigenous people but I’ll have you know that some universities have also developed their own guidelines for in ethical indigenous research that are either General like the UVC here has developed protocols and principles for General indigenous research um Thompson
River University is using a distinction based approach which is better they are using the research ethics guidelines of the First Nation on which their University sits and and that’s great this is just a photo so you can’t oh wait sorry can’t click on it um but you
Can you can Google this up Thompson River Tru research ethics guidelines and you can click on this PDF and you can get this document so and and I like what they said here about honoring uh reconciliation and acknowledging the first nation’s people uh who are in the territory of where their University is
And why they are working with them and embedding their research ethic guidelines into their research uh protocols at their University that would be great and I’m sure it’s not a perfect process or it’s not enforced but it’s a good start um one of the issues I think
It’s important to note about all of these guidelines and protocols is they are just guidelines and protocols there is no requirement by any University by any uh funding Body by any uh government or lawmakers that says these have to be used um many researchers continue to apply to CHR and other government
Granting agencies and get money without following tcps chapter 9 requirements for ethical indigenous research um many researchers get money from other branches of the government that don’t follow indigenous ethical guidelines or protocols such as these so the system is not supporting ethical research so not
Who does that fall on us it falls on the individuals being harmed by research or the individual researchers who want to do better whether we’re indigenous or non-indigenous so so there’s these National guidelines the oap and the um the the tcps2 then universities have some universities have guidelines and I
Don’t know all which universities do not many UV definitely does not and then there’s some culturally or community specific Frameworks for ethical research so for instance here Six Nations has their own research ethics protocol and I pulled this off the internet you can go
Look it up and it’s great um the uh uh Manitoba First Nations leadership Community agency has their own ethical guideline for research and and then the whoops sorry I don’t know how to work this thing and then the the hoden shony also have uh or sorry this is a a
Cre a a cre ethical um protocol for research also exists here so these are for these specific communities so that’s wonderful some Community agency have their own ethical Frameworks that that that have been developed like the mcmah uh group has their own ethics protocols and guidelines so that’s and
That’s what we need to work towards we also have National IND Inuit and mate Frameworks um that have been developed uh the national Inu strategy by itk and the principles of ethical mate research and I know different um mate Nations uh like across the country have also developed their own principles of
Ethical research so it’s very important to connect with that if you’re doing matey community research you wouldn’t use a first nation’s framework or guideline for research ethics with the mate Community or an Inu Community you would use the ethical guidelines from that specific community and if that Community hasn’t developed
The ethical guidelines then you would work with that Community to talk about what ethical guidelines they want to adopt for the research you’re doing Roy do you have something to say no yes uh sorry I was just checking to see if the chat’s working now
She in the in the Q&A it says no the chat’s not working it says chat disabled you have to go in the Q&A to see that okay I’m still working on it I don’t know why it’s not working but that’s okay we’ll keep going I will keep going with the
Presentation so so these are some of the resources that exist and that was one of the question where do you go so you’ve got the national Frameworks you’ve got the University or Community agency or First Nation specific Frameworks you’ve got Inuit and mate guidelines and National or Community
Frameworks so now we’re at the group discussion part so I was hoping that people could go into breakout groups breakout rooms for this um and or or or at least if we can’t go into break rooms have a large group discussion Roy is there any way
That people can be in a large group discussion where they can actually speak where is not answering so I guess let’s just use the Q&A um to you know to to respond to these questions I feel sad that we can’t have an interactive discussion uh because I am a very
Interactive person and I feel like that’s where the true power of any type of Workshop is is in the relationships we build and have with each other so um just a quick question to all of you so can everyone here see the Q&A or is it only the panelists who can see the
Q&A oh David says we should close the session reopen as a meeting that’s a great idea um I I could just do that if you like I could uh I or actually I shouldn’t try to do that anytime I try to do anything detail or technical
Something bad happens um maybe Roy uh do you think that you could um just open a zoom meeting and send everyone who’s here an invite to a regular Zoom meeting I could try but we’re recording it right now we’ll just have to stop recording and start re-recording then
And you can piece them together okay would that be okay with everyone so we’ll just leave here and Roy will email you all just a link to a regular Zoom meeting everyone all of us just a regular Zoom meeting and then we can all see each other and
Talk hi yay everybody got back thank you for your patience and thank you Roy for your hard work thanks for the great idea David okay so now that we’re all here if anyone wants to speak or say something please unmute and or turn on your your camera at your level of
Comfort so I’m going to put back the discussion questions hang on let me get back let me see if I can find an answer to your question okay here we go okay get back to the questions here we go so what have you observed in academic First Nations mate
Research my mouse oh if you’re um just everyone please remember to mute before I started this video somebody has not muted there we go what have you observed in academic First Nations mate Inu research uh specifically what H have you observed processes or act actions on the part of academic
Researchers and do you think land uh do you think of land as cultural appropriation in dominant society and how is this linked to research so anyone who wants to respond to either of these questions we can you can just start talking now no one wants to talk what have you observed in academic
Research do you think of land as cultural appropriation in dominance society and how is this linked to research okay is it okay if I chime in for a second yes anyone just introduce hello everyone um my name is Jazelle I’m from Six Nations Grand River
That’s my band uh but I grew up off Reserve I’m Gaga or Mohawk and I come from mixed background um on my father’s side we are mixed indigenous so we lead Our Lives as Mohawk first we noon first but my grandmother also is Bod W me from
Pine Creek Reserve in Michigan and my grandfather is’s borua so indigenous to also known as tyo and my mother um just Japanese Japanese from yokahama so that’s a bit of my background and um I grew up off Reserve uh usually just traveling a lot um my hopes uh were to
Become a medical doctor um my family has experienced a lot of medical violence um including myself and so um I wanted to come to Europe because it’s also closer to my community and I also have family there around the area um My grandmother used
To work with M beak um Peggy Smith um my grand Uncle his name is uh Pat Green he actually recommended me to use suzan Stewart um and I’m a UFT student and so I’ve been hoping to get into medicine and I’ve been trying to be wary of
How much of our community has faced this medical violence has faced violence in research as well um and there needs to be a lot of reconciling to begin with in the fact that a lot of folks in my family especially don’t feel comfortable with receiving Health Care um from
Clinics things like that because of a large disconnect um another thing I’ve really noticed is that amongst the UFT campuses there’s um a very concerning amount of pretentions as well as is um uninformed consent not only for participants of research but as well as myself what exactly I’m getting into you know people
Change promises last minute and at the end I’ve been tokenized from my experiences here and I also realized a lot of the income coming from the research that has been conducted on my campus and throughout the other three campuses um as well as the grants uh cause a lot of folks
To manipulate their wording and manipulate how they conduct their research so it’s not completely truthful and so with this incentive of Grants funding who gets what how it’s going to be placed within this research and to their participants and the researchers themselves um trying to navigate
That um just if there’s any tips on that as well as you know receiving grants um who to look out for uh I don’t I don’t know if I can really sorry I kind of muddled muddied what I was asking but there’s like a lot of pull of grants
That a lot of researchers may not be using it with the best intent or trying to gain and end up gaining those grants um and they usually try and tokenize allot of the indigenous students community and staff um and use us as like a stepping stool using names
Without our consent in writing up for these grants um using pictures that consent a lot of this how can someone like me or just really anyone navigate those kinds of spaces um how can we create our own uh research groups where we can better conduct this with better
Intentions um right now it feels pretty impossible and so that’s kind of where I’m at now thank you so much for your comments observations and questions and you know just to kind of summarize so it sounds like what you’re what you’ve shared and thank you for your courage and sharing
Is that you’ve seen a lot of um a lot of research being conducted within indigenous research being conducted without integrity and you’re not really sure how to navigate that so that you’re not um you don’t have to be part of that but you still want to do research and do it
In a good way in a community way and I would say how to do that well there there are a few ways so getting working with other people who are doing good research is a great example and I see some people on this call who are some
People that I work with who are great people to work with so if you know of any professors or graduate researchers or new career researchers who are doing stuff that you think is good call them up email them drop by ask them if you can work with them and learn from them I
Think that’s great also working with uh knowledge Keepers you know actively doing that we have a bunch of knowledge Keepers who work on C cus at UFT there’s also great indigenous graduate student supports and resources that have been developed and are still being developed across the country so
You know we have the um Ontario indigenous mentorship Network for graduate students and they we have those Regional indigenous mentorship networks uh across Canada in every region in every Province uh universities also usually have undergraduate and graduate student groups there was a couple at UV I don’t know if those are still going
Since the pandemic pardon me but I think those can be accessed through first nation’s house uh at UFT and like I said just reaching out to uh indigenous or non-indigenous professors who are doing good work that you like and respect and asking them if you can uh work with them I think that
Would probably be best bet your question uh just to quickly add one more thing um in with my experiences I am also having to deal with folks who are in higher positions the superiority who are leading these research um projects with not a good intent um and so having
As a student having to bring that forward to a board um who doesn’t really want to listen to what you have to say um as well as you know denote your experiences completely disregarded um is a better word because this other person has more experience and friendship with a board than a
Student does um I noticed that a lot there’s a lot of difficulties not just for myself um but for other students as well um it’s just almost feels draining that there’s a lot of these barriers that are brought up yeah absolutely there can be barriers and and so trying to find people that
You can work with that you know are good and sticking with them is could could be helpful with that as well as these uh student groups I would recommend contacting the indigenous the IM the Ontario imn if you just Google Ontario indigenous mentorship Network the their website will come
Up so we have two other people Laura and uh sunila I don’t know who wants to go first you guys Lori I mean sorry Lori hi there my name is Lori I I will try to just be very quick I so I am I
Feel like I’m one of the uh many sort of lost people so my uh grandmother uh zish from alderville First Nations you know much like our Collective story my history is been very shameful and secretive and disconnected um and it’s only been in my
Last I’m 50 I don’t mind sharing I in my last day 40s I’ve been trying to reconnect and make sense of it and and uh assimilate it into my work I’ve worked within mental health and community services for 25 years um and so I’ve spent much of my life feeling
Like like I don’t belong I don’t belong in indigenous community of course authentically I don’t belong really in sort of Western I feel very not at home within Western colonized um environments and I was raised with values that are more in line with indigenous but again I’ve been very disconnected so
Thankfully I have many um Anish nambe friends and colleagues who’ve been so welcoming and and uh have tried to share but back to your question around the um what I’ve observed so I think not just in research but in literally every system and structure known um I feel like it’s you
Know uh jazella you talked a lot about some kind of overt you know behaviors and actions and things that go on but I think what has been profound for me is the covert and sort of Insidious and buried layers as well that are almost like so overwhelming sometimes I can’t
Breathe with that and it’s in things like the definitions and the Frameworks and the structures and even in the language and I know myself even in my early Explorations and trying to understand this both academically and applied ways in the community you know again I have very many andish na friends
And colleagues who have been so patient with me where I’d be saying but but what does this mean and describe it to me and they would joke and say oh that’s your that’s your Western thinking like you’re trying to categorize in your so it was I didn’t even realize how sort of layered
That is and so uh it’s a little like hearing a bell ring once you hear it ring you you can’t unring it I see that throughout research throughout Frameworks throughout education throughout our service system and it’s overwhelming so I think being able to uh shift it I I don’t I don’t know
How right because I know there’s two School of thoughts some school of thoughts say we have to learn how to sort of work within those Frameworks and others that are like down with the Frameworks let’s rebuild something new so um I just want to acknowledge that that I think it’s actually very very
Deep in research and not always um ill maybe I’m being optimistic I I’m not always sure there’s ill intent I think there’s a lot of people out there trying to understand but also just trapped within you don’t know what you don’t know and then just quickly with
The land I think it ties back to that idea of entitlement sort of this ownership you know we were talking in one of my leadership classes in my um I’m doing my Masters in Education currently and um we were talking about this idea of ethics and how you know all definition
Of ethics when we’re talking about ethics seem to still be grounded in human to human and they just completely Miss ecological sacredness and so I think it’s incomplete and I think that ties into some of the land pieces so try to keep it brief it was a lot of
Information I hope that’s I hope that shares some perspective thank you so much for sharing Lori that was really rich and and very honest and courageous so Massy Cho for that and and I do like what you were saying about the land and that was
Why I put that question in there was to try to get people to start thinking about you know because indigenous ethics are supposed to be applied when there’s anything to do with indigenous people but is not the Land part of indigenous identity and Indigenous cosmology so if
That is the case then wouldn’t any research involving the land be subjected to indigenous research ethics that’s kind of where I’m trying to start the percolator of up here going so as sorry I can’t see anything small the Maran glasses sinila yes hi suzan we have connected long time
Back so just a brief uh I remember I remember yes so yes so I’m a u of Aluma and this is a wonderful wonderful opportunity to come back but uh I work in Fort Smith Northwest Territories at Aurora college and that’s our connection essentially and actually I work in
Research ethics my title is manager research ethics and Regional programs I I moved here in territories about three years back but I’m still at Toronto and no I pay taxes here so I’m try I’m still trying to be between the two worlds um but uh kudos to you and like you know
Last year also I attended some of the things I just wanted to give you a quick update on number of number of learnings which we are uh absorbing and we are not perfect I’m I’m talking from me as a research ethics person me as a research
Like I’m among many things I’m a board of director for carab which is Canadian Association of research ethics board but more importantly I’m learning from the research which gets which gets conducted in territories in various parts so I just want to give you the quick update
On the land thing and uh want to give a shout out to Kelsey Ron from Desa uh last year we had like we we in the territories are blessed to have number of studies and we are the only postsecondary institution so if it is ethics and it if it involves human
Subjects it comes to our door and then we have to say yeah or n or whatever so it’s a very bad position to be in depending on where you are but we were able to Advocate and say that uh you do not please do not look at uh human
Subjects only as compartmentalized uh it should be looked at chapter nine should be looked at little more widely and land water animal environment along with humans because we are we are not separate uh we have been trying to Advocate it and this is positive so that’s what I’m sh sharing somebody
Someplace is at least listening so I have talks with Margaret bne of tcps people are very aware that that chapter needs to be chapter nine needs to be updated and you rightly said but we can talk all about it and uh let me tell you I’m not expert but we have gone through
Number of things related to land our recent experience with wildf fires and number of things associated with it so we live this but uh coming back to KY and her Desa so I had invited her for the way they do on the land programs and one of the things they introduced was uh
Taking permission from land and doing a ceremony before even we do anything and I’m very glad to inform that we love that and quite a number of environmental related studies which are I’m not allowed to name names but which are coming from uh governmental organizations we could push that and
That is something I’m very happy to report that that’s one of the processes or tools or techniques uh and all kudos to for that that’s it Mas thank you so much Sunil I really appreciate you sharing that and that because that’s so important and and I
Think that’s really where a lot of this discussion has been lacking and there’s been a big gap in in understanding that um by the research academic research community so I’m just going to go back to the presentation because we’re only have 15 minutes left and we’ll um we’ll
Reserve our questions and comments for anym till the end so you know the the sort of where we’re heading is that research has to be reconceptualized uh and practiced to emphasize empowerment rather than oppression because a lot of research has been oppressive and in fact less than 5% of researchers who do fnmi
Research actually have any specialized training in uh indigenous research methods or any knowledge of indigenous languages or paradigms so you know that means that research continues to be nothing more than cultural tourism to benefit the tourists who are of course the researchers and Their audience and First Nations maintain Inu continue to lack
Control of research processes um and results because there’s actually no unified or required guideline or methodology for these ethical violations and not that’s what I mentioned earlier so that’s kind of what the current situation is one of the really big issues is data sovereignty data governance and data sovereignty are the
Sort of are the Salient issues in re search right now ethical issues and you know people are like what does that mean well I found a really good definition of what data sovereignty is and that came from the uh Simon Fraser University research data management so you can go
Look that up and that’s really about understanding that indigenous people have the right to control own access and take care of the data about their lands communities culture people and these data and information management have to be determined and mediated by cultural practices of people who are involved in the data so this
Means that people who are represented in the data like uh you know participants Community organizations they have to actually be partners not subjects or even Partners is even too um too passive of a word you know so so these are things that need to be considered in data sovereignty that haven’t
Been okay how am I doing this there we go so what are some resources for addressing the important ethical issue of data sovereignty well there’s a great book written by our Maui colleagues indigenous data sovereignty you should read that also there’s been International principles developed for indigenous data governance
By indigenous Scholars from all around the world including Canadian Scholars so here’s the you can just Google care principles for indigenous data governance here’s the actual website and they have all kinds of resources aside from this data governance um model so that these are great things resources to
Start to use some of the other current issues are around that that come up when we try to address these is who indigenous groups and appropriate authorities are is not really clear especially when we get off reserves even on reserves it’s problematic Big Data continues to be a
Challenge for First Nations main inate populations especially in health and Education and Research on strengths and solutions from the indigenous Paradigm continues to be lacking um there is continues to be also this lack of capacity for indigenous research in both academic and Community settings and that’s because universities
And hospitals are not safe spaces for our people to work learn or be so this is systemic so what do we know for sure after all this well we know that Community Partnerships and ethical principles are very important to any study but because because of the colonial context and the
Knowledge appropriation people remain suspicious of research and researchers therefore having these strong respectful relationships based on indigenous values like reciprocity are what creates valid and ethical data um you know another solution is that there has to be a shift in the Paradigm of research um to address all
Of these issues away from these Western paradigms of knowledges and research and ethics and basically First Nations M te in your research has to be priorities for universities so that means that in all of these institutions they need to have an fnmi research strategy there should
Be an fnmi vice president or provoc po at the central admin of the research there need to be associate deans of SMI research in each school and we need to hire more indigenous people there there aren’t enough and that’s you know that’s part of the attrition is keeping us down
So that you know we get overwhelmed and we can’t do this work so I guess ultimately you know this culture conflict between Western methodologies and Indigenous knowledges of ethics and practices has to be addressed and resolved at the policy level and what else do we need to do
Well that was where I want to turn it over to you but since we have only 10 minutes left we’re not going to do that because we don’t have time and I’m going to share with you a few more sort of uh nuggets of of help uh in terms of how do
We negotiate research ethics boards as indigenous researchers and you know the the way to do that is I’ve developed some system systematic steps so we’ll make this presentation available to you so we want as people who are wanting to do ethical indigenous research what do we do and
How do we get it through ethics an Ethics board at a university because this is a whole another pragmatic problem that we deal with so Step One is we create a research proposal using an fnmi methodology and a western academic framework so right there double the amount of work these are some examples
Of good Western academic research proposals that I found that I use myself and I encourage students to use then in addition to that you can choose one of these indigenous or fnmi methodologies so I’m Den so I like to use indigenous knowledges Den knowledges to structure a research proposal I’ve
Also since I work in in anishnabe territory with a lot of anishnabe people we’ve used Anish naab values and principles such as Seven Grandfather teachings as the actual methodology to our research citing them we can cite yoria laws the great Denny’s laws we can cite uh this Seven Grandfather teachings
We can cite the hodon great laws the laws of the long house we can site anything that we want that is based in indigenous knowledges whether it’s written in a book or told by an elder and that’s what’s really important in creating the research proposal then you want
To get all the appendices you need for your research proposal like your partnership letter your oap certification remember we talked about that that’s a national guideline you take a course you get a certificate saying you’ve been educ ated in oap uh for data collection tools for data analysis method steps recruitment
Posters recruitment script consent forms you get all these appendix to your research proposal that are all done using indigenous methodologies and Western methodologies and you’re going to format them with your community partner helping you to put everything that’s in there your Community Partners and you’re going to ensure that every appendices every
Appendix sorry like all these are formatted in a way that shows the name of what the document is the version version one version two the date it was created you’re going to ensure that on every appendix to do with your research proposal including the research proposal
Title page has the name and the logo of the indigenous Community partner you’re working with so that it’s clear and there’s transparent parency about who’s who’s there and that that information is on on everything every piece of paper to do with the research and then you’re
Going to also um make sure that you have all of those appendices in extra documents on the side in word so that you can revise them and when you’re ready to submit it you’re going to fill it all out on the online portal and you’re going to cut and paste directly
From this proposal with all the append IES that you’ve made using indigenous methodologies and you’re going to send a copy of it to your Community Partners whoever those are so they have it you you you’ve submitted an Reb application you’re sending it to your community partner while you’re waiting to get approval
Back once you get approval then you’re going to send them the final copy that that was approved as well as the approval certificate so there’s transparency because that that’s part part of an ethical research transparency communication and one important thing to remember and this is probably the most
Important piece of advice that I never got that I learned from trial and error is that Reb reviewers are not usually informed or educated about any indigenous re research ethics issues or news or needs sorry so don’t be afraid to respond to these comments that are really based only in Western ethical
Guidelines so some of the comments and questions that I’ve got that I had to respond to I’ve Been Told oh $50 is too much of an honorarium um to give to a participant you can’t do that that’s coercive you know when I’m giving an elder a $250 an
Honorarium a youth a $100 honorarium you know I have to explain to them that holders of indigenous knowledges need to be honored and respected at the same level as Western experts do otherwise I’ve had research ethics uh applications rejected because my honorariums are too much or because I’m using tobacco to
Give to people um you know the these people on these boards who are evaluating these applications often don’t know and if you don’t if you get stuff back that you feel stumped out ask for support from a mentor or colleague um another quick thing I come back from
All the time is that community members that is non-academic team members so we have community research assistants we have staff from our Community Partners on our research team doing the research with us that’s how it remains ethically Community grounded ethics says if they’re not an academic student or a
Professor or an academic researcher at the University they’re not allowed to work with the data well that’s just plain ridiculous so that’s another thing that has to be explained and dealt with so it’s kind of like you know you’re you’re up against something that is giving you permission for something it
Doesn’t even understand so be aware that that’s the context right now so the final conclusion really is that there’s models there’s guidelines there’s protocols out there for research ethics and these are not always helpful especially for people who are not already practicing in a culturally Safe Way or understand how to build
Partnerships and relationships so therefore you know current guidelines and protocols just because you’re using them does not mean the research is going to be ethical does not equal ethical research because ethical research comes down to the Integrity of the person and the quality of the relationship and taking off off boxes
Isn’t going to ensure that it’s more than that so Massie Cho thank you so much for all of your time um we have three minutes left so if anyone wants to say anything quickly you have like maybe 30 seconds if multiple people want to speak
So let me you know just put your hand up and there’s my contact information if you need it please just uh put your hand up or unmute if you want to say something if you have a comment go ahead please can’t hear anyone it’s G just wanted to quickly say
Thank you for this learning opportunity appreciate it me witch anyone else hi Suzanne um I know I’ve only been here for a little bit of time but uh uh really appreciated what I what I heard about land and uh and ethics you know questions around use of land and and
Then somebody put well what if the land says no love it so lots of food for thought thank you nice to see you I love it thank you Raven I think all researchers need to understand that their life depends on the health of the land and if they don’t
Get it then they’re going to continue to oppress Oho oh me and thank you lots of food for thought I was just going to ask uh so will the will there be additional links because I know I missed a couple being in the other room like as as far as the PowerPoint
Goes it’ll post it’ll be posted on our YouTube Channel please go on there and watch all YouTube up our number we got lots of videos on our YouTube channel if you search up wab Bess instit yep so please go and so Clayton can I invite you to do our closing please
Yeah um just a you know few words I guess um as you’re all you know there what we what Dr Suzanne has talked about both methods of research and everything and and I just you know what is the goal again right just to point that out right the goal is
To heal the self right and I was thinking when you everybody was talking and when Suzanne was talking I was thinking of my father who was passed right some of you knew him some of you liked him and some of you didn’t and that’s okay because he was this guy who
Was who came out of an horrible experience right and he’s that generation that generation came out of the residential schools right all of this and he you know he could have he could have went this way he could have went that way and he used to tell me
This he says I’m nobody’s special son I’m just you know I I’ve done some horrible things right and I was and and all of this stuff and I heard a lot of people cuz I didn’t know any better I didn’t know who I was I had no
Idea and but I how I healed myself I went back took a tremendous courage because by then he he could have went either way he could have went in been became institutionalized right went to prison this and all of the stuff he was an alcoholic he was a heroin addict he was
Everything all of that and he was of that generation and he was no one special he used to tell me but the thing would Sav me and the research he did ceremony that’s what saved his Spirit that’s what saved him that’s what he did and so many of those people of that
Generation did all that they didn’t have you know and some didn’t make it and some did but he was of that generation who did all the work for us right and fought civil rights human rights Etc did all everything and so he sat in ceremony
And it was it wasn’t his doing it was his my mother right who said if you want to have a life you know with me then you you’re going to have to do this right and so he he stepped into ceremony took a tremendous amount of Courage he talked
About that later how terrified he was of his sweat lodge how terrified because he he felt he wasn’t worthy right to setep in that place he felt that he he told me that he said I all the things all the the horrible things he did to himself and to others
Because of the trauma all right all of this and so he he he told me this and then and then he said I went in there and I healed myself right I found myself and I became he be later in life he became this man
Who ran a sweat lunch he became a Healer he helped he served right my whole point is that is really the research is about there was a time when we weren’t allowed to to practice there was a time when we were allowed to do anything and when and
The research all points to this is the only way that we are going to heal ourselves because we’re all finding our all the tribes are finding their original instructions again and how to live a good life everything right and some will speak the language and some
Will do this and some will become this and all of this and some won’t all right but the point is that the Next Generation that’s our children that’s our grandchildren right they all they have everything to heal themselves right because of all the hard work that you’re doing each one of you
Everyone all the work that we’re doing so our children will will get to a place where we our children will be healthy beautiful human beings again right that’s what we’re working towards that’s what I’m working towards that’s what I’ve dedicated myself to to my granddaughter all right everything we’re all doing
That it’s the most important thing and that was the the the that was that my father’s generation that did all that right did all the work for us so I acknowledge them right they’re called Elders I’m not an elder so don’t ever call me one all right so I’m just a guy
Who’s trying to be a practitioner and trying to to heal myself right because I still have the residue of my father’s trauma right all of this I don’t know if that will ever go away but I’m going to try but I do I
I know how it works I know how it I know what makes me a better person and that is my our way of life our culture our medicines our everything our ceremonies ceremony is research right and this is what we practice at w bz and this is what we
Quote ceremony is research right to heal ourselves it’s up to us and we can do it now and we’re getting better so I want to I want to thank Dr Suzanne for all the work she has done all all the everything and all the other researchers
Are out there right doing every all that work for us so I take a moment or two in this language I say Mig