Presidential Address, 2022-Dismantling Systemic Barriers: Re-Envisioning Equity and Inclusion.

03Original abstract

It is my privilege to deliver this presidential address and to learn and grow with you during the 146th American Association on Intellectual and Developmental Disabilities Annual Meeting and Conference. I am particularly grateful to have the opportunity to connect through our two conference venues—in-person and virtual. Each of us has been impacted in profound ways by the COVID-19 pandemic, and the impacts of the pandemic continue to reverberate throughout society. There is no question that the impacts of the pandemic have differentially impacted marginalized communities (Magesh et al., 2021), including people with intellectual and developmental disabilities (Gleason et al., 2021; Landes, Turk, Formica, et al., 2020; Landes, Turk, & Wong, 2020; Lunsky et al., 2022), exacerbating existing disparities and pushing to the forefront the need to address issues of equity and inclusion (Sabatello et al., 2020). Hosting our conference in two venues represents one small step and a recognition, I hope, of the need to respect, value, and promote access and inclusion in ways that recognize different needs related to health and wellness and to build systems of supports that start from a position of centering the voices and needs of those that are marginalized in our existing systems.Alongside the pandemic, we have as a society been further confronted by the pervasive and ongoing impacts of intersecting systems of oppression rooted in ableism, racism, and sexism, that create barriers to equity and inclusion and cause substantial harm to marginalized, particularly multiply marginalized, communities that experience intersectionality (Crenshaw, 1989, 2017). We have witnessed systemic police brutality and the deep rooting and impacts of the carceral state. We have witnessed regressive policies advancing misogyny and misogynoir and devaluing basic human rights. We have seen certain social identities privileged over others. These intersecting systems of oppression limit equity and inclusion for all, but particularly impact efforts to advance disability, racial, and cultural justice as they sustain the deeply rooted biases in our systems, policies, and practices. Further, they fail to recognize, celebrate, and elevate the contributions of all members of our society, including disabled leaders that are multiply marginalized. Dismantling systemic barriers is critical to advancing equity and inclusion. As a field and organization of leaders in intellectual and developmental disabilities, I believe we are at a critical juncture. I believe we must begin to take steps to interrogate power and privilege and think and act with a critical lens to center the voices and experiences of people with intellectual and developmental disabilities who are multiply marginalized.Naming systemic barriers is only a first step in interrogating the role they play in the long-standing and pervasive inequities experienced by people with intellectual and developmental disabilities, particularly people with intellectual and developmental disabilities who are multiply marginalized—a term I will use throughout this presentation to refer to people with intellectual and developmental disabilities impacted by intersecting systems of oppression; that is, people with intellectual and developmental disabilities who are Black, indigenous, and people of color; people with intellectual and developmental disabilities who are lesbian, gay, bisexual, transgender, and queer or questioning; people with intellectual and developmental disabilities who are immigrants; and people with intellectual and developmental disabilities who speak multiple languages and communicate in diverse ways. Naming must be followed with actions that break down systems of oppression and advance equity and justice. The importance of naming systems of oppression and centering the voices of people with intellectual and developmental disabilities in re-envisioning equity and inclusion is what led me to choose the theme for our conference this year. I want to use this space to issue a call for all of us, particularly those of us that have privilege and power in current societal and professional structures, to take steps to re-envision how we partner to remove inequities, injustices, and marginalization across all aspects of society, including in our individual and collective research, policy, and practice.As I reflected on my work and the theme for this year's conference, this would not necessarily have been the theme that I would have guessed would drive my conference when I first became engaged with AAIDD, almost 2 decades ago. Throughout my career, I have been extensively engaged in self-determination research (Shogren & Raley, 2022), as well as work seeking to advance strengths-based, social-ecological understanding of intellectual disability that attempt to examine how the contexts we exist within shape our individual and collective outcomes and experiences (Shogren et al., 2017; Shogren et al., 2021). I value all the current and past collaborations and mentorship with and from AAIDD leaders, as well as with the broader community of people with intellectual and developmental disabilities. However, this work has not pushed the field forward as far as I had hoped when I first began my training to become a self-determination researcher. My shift to studying self-determination during my graduate training was highly personal, shaped by my sudden and jarring loss of personal self-determination when I was an undergraduate student, even though I had never heard the term self-determination at that point. I had to suddenly begin engaging with medical systems because of the emergence of my disability. And, during this time, I experienced, for myself, what the loss of a sense of personal agency felt like and how it diminished my quality of life. I realized that it was the loss of agency that better explained my “challenging behavior” during this time (often referred to in my medical charts as noncompliance, which I often referred to as substandard care). I recognized at some level—even though I did not fully understand it at that time—my privilege in avoiding the consequences that many people with intellectual disability, particularly those that are multiply marginalized, experience when they rebel against their loss of agency (e.g., additional segregation, isolation, and further external control). I wanted to make sure that no one else felt that loss of agency. Through my graduate training, I found a pathway, with support from AAIDD leaders and mentors, to begin to address individual barriers to self-determination that people with intellectual disability encountered, focusing my research on developing assessments and interventions that enhanced personal self-determination in school and community contexts.However, although I recognized the impacts of the othering and dehumanization that permeated so many of the disability and health service systems that I was experiencing, personally and professionally, I could not yet fully name the impact and role of systems of oppression and marginalization in limiting opportunities and agency. I did not have the language to challenge the deeply rooted ableism and sexism inside these systems that were shaping my experiences as a newly disabled, female, first-generation college student. I did not fully recognize all the social identities that each of us experience, and how all of these identities jointly shape our experiences of the world, with certain identities privileged over others in our current systems (Annamma et al., 2013). But, as we know from the social model of disability (Davis, 2016; Oliver, 1983), the systemic barriers often had a more profound impact on my quality of life than my health condition, even with my significant privilege as a White, cisgender female. These barriers are even more pervasive for people with intellectual and developmental disabilities, particularly for people with intellectual and developmental disabilities that are multiply marginalized. I do not think I fully realized how much these intersecting systems of oppression created power and privilege and how these systems and this power and privilege became self-sustaining. And, as some of my trusted colleagues have justly pointed out to me, much of my research in education systems has been situated in a system that privileges White, middle-class identities. Thus, although not my intent, my work failed to center the experiences, resources, and funds of knowledge of people that are unjustly marginalized in our current systems.Although I talked about systems in my research and recognized their power in shaping outcomes, because I did not have the language and understanding, I was unable to articulate and critically examine the systems of oppression that were limiting my work and its impacts, as well as my personal health and well-being. In many ways, as I have spent time reflecting, I became complacent as a White, middle class, female, cisgendered researcher, working in ways and in systems that were familiar and comfortable for me, and not fully recognizing and acknowledging the broader issues or the broader community I was not partnering with. The focus of my research became about supporting each person as they interacted in systems, but I was not acknowledging the inherent inequities in those interactions given the biases that were so deeply rooted in systems. And, although I still value and believe there is a critical need for work focused on supporting each person, I also believe there is a need to challenge myself to better recognize how systems of oppression fundamentally shape this work and our broader research, policy, and practice in intellectual and developmental disabilities.I am becoming increasingly aware—as are many in our society and community—of the need to listen more to those with lived experiences and center these experiences to support action to advance equity and inclusion. This will require critical self-reflection, as well as critical collective reflection on our research, policy, and practice. It will require that we examine our current theories and approaches and how they have been shaped by systems of oppression, and it will require engaging with work broader than our own. It will require building new coalitions, and creating more spaces for inclusive research, policy, and practice that critically analyzes and re-envisions how to approach all the factors that impact outcomes, from the perspective of those that are impacted. This work must recognize and collectively engage with leaders and scholars who have long been tackling these issues (including many of the invited plenary, preconference, and conference speakers at this 146th AAIDD Annual Meeting and Conference and other leaders in the field).Naming and taking action to identify and dismantle systemic barriers, including interrogating our complacency with these barriers, is not intended to minimize the work that has been done. But, as a researcher, data on the ongoing disparities across multiple outcome domains (e.g., inclusive education, employment, community participation) highlights the need for different pathways forward and the need for new coalitions, voices, and perspectives to be centered throughout all the systems that shape research, policy, and practice to enable deeper change. I believe this can lead to new and even more impactful personal and systemic interventions, policies, and practices that re-envision equity and inclusion and center the voices and funds of knowledge of people with lived experience.We must also acknowledge the struggles and anxieties that such work can bring. I am still working to learn, name, and act, and I know this will be an ongoing process. Actively critiquing my own work and positionality is not always comfortable and I know that I will make mistakes. I also know that terminology will continue to evolve and change. But, this work is necessary and does not compare to the struggles others experience in continuously navigating intersecting systems of oppression. And, I like to believe that, if any of us are to grow and have the collective impact we seek, growth, change, and vulnerability must be how we approach our work. Just as my lived experiences shaped my initial drive to support for people that are in our society, my ongoing and experiences in systems that privilege certain ways of and have my of deeply rooted systemic barriers and the importance of not be a for not pushing for change, personally and We must that we what is act to support the work that is this work and do not marginalized communities to the we must engage in new collaborations and It be to any that this does not me or my work in because it all of has long been in the intellectual disability field and within AAIDD of the impacts and of of disability that intellectual disability and other developmental disabilities, including as or to be or 2013). We have seen efforts to acknowledge the impacts of in the intellectual disability field and take steps research, policy, and practice in in our work Association on Intellectual and Developmental Disabilities 2020; et al., 2021). We have also seen the on these efforts throughout society. these it is a particularly time to name the deeper issues and re-envision equity and inclusion. we inside of existing systems and in society, I believe we can more critically the in which these systems and are rooted and use this to re-envision these systems and our collective in work that is led by leaders and in AAIDD and My in this presidential address and in the theme of the 146th AAIDD Annual Meeting and Conference is to call all of us to collective action that the voices and funds of knowledge of people with intellectual and developmental disabilities who are multiply marginalized in systemic in systems of in my own and I have of disability (Shogren et al., this work has centered the on disability and disability systems, including policies and practices in the disability field (Shogren et al., 2020). I have out the broader ways that of all systems in our society. I have not ableism as a systemic that the impacts, and outcomes of my research But, the of ableism must be of our broader We must and learn from the of disabled and This an opportunity for us to our focus on critical of intersecting systems of oppression, centering the voices of multiply marginalized communities throughout all of research, policy, and practice Wong, and in a issue on ableism, ableism as and social oppression people with this as a of ableism, intended to social of other in to social research in this recognize the of ableism in the of people with disabilities and the need to factors that people with disabilities. leaders are increasingly pushing us to name and support the of this marginalization throughout society. And, we begin to name it to identify ableism and all systems of oppression and impacts in our research, policy, and even research, policy, and practice with the Disabilities to inclusion a of that on & 2020). data for with intellectual disability highlights the use of & and the impacts of systems of oppression. with disabilities are more to experience than their of 2021). and supports through were only through that continue to of to and The ongoing impacts of systemic ableism & and et al., continue to impact and the quality and outcomes of the for people with intellectual disability, its in and policies and (Shogren et al., of us at the 146th AAIDD Annual Meeting and Conference are of and to challenge the barriers to and self-determination through our individual and collective and advance policies, like the on the of with Disabilities that inclusion as a human and an in all systems and practices. But, could we do more to critically examine the to which the of inclusive outcomes is rooted in ableism and its with other deeply rooted systems of oppression that fail to center the voices and funds of knowledge of people who are marginalized in existing out of ableism by disabled leaders has intersecting that are also increasingly pushing us and ways to about other racism, sexism, and how they all the societal we exist within and power and privilege in certain social marginalized social et al., in work on highlights that importance of to call to as a to promote understanding and change. issues related to the of these systems of necessarily have a of racism, do they have a of ableism, which from understanding their 2021). But, they are of the 2021). scholars have long that and ableism and lead to further and dehumanization of disabled people of theories that these intersecting systems of oppression, such as disability critical or (Annamma et al., et al., can be with to such as have to better understand sexism and misogyny and their with other systems of oppression. sexism as of that and a social and misogyny as the system that and its and highlights how all people can be in social systems and how systems rooted in act to position by as taking opportunities and privileges from It is to recognize that the focus of this work is not on individual but systemic and This in that ableism and is not related to disability or disability and but also the system of policies that of on and certain ways of navigating throughout all systems in society. It on the need to take action to dismantle systems that and social justice and leaders have on of ableism and the focus on recognizing how systems of oppression to privilege social identities. ableism of these leaders I am on and from are engaged in this work across research, policy, and and are that all and systemic biases that create power and privilege for one at the of to create systems of oppression that are pervasive in our society and down and are in our research, policy, and practice in intellectual to work on like a of as that one is or to in any that the and of inequities in that can be the that a is or supporting cultural or to that or the that a can never be supporting that that that are and needs about these and the to disability and ableism and the of and leaders in AAIDD have steps to they still a of the of this organization and in multiple of society. But, as a have we fully and also still shape so many aspects of disability research, policy, and practice. much of our research focused on supporting disabled people to use existing societal systems and and this is more deeply for for with intellectual disability et al., or for people with intellectual disability et al., 2020). However, are our existing societal systems and the could our work like if we these systems of if we that each person needs supports in inclusive systems that all people as fully human and in their advance an I believe we need to new through which we and research, policy, practice to outcomes at the individual and systemic that down the use society and in our collective we that ableism is a of broader intersecting systems of oppression that impact all aspects of our society, I believe we can take steps I all of us to learn with and support others who are this work. In my work as a researcher, an lens that intersecting systems of oppression can me think about what I need to do to advance in research, policy, and practice to the voices and experiences of communities that are marginalized in our current systems. I believe one that as a researcher, can recognize how systemic ableism and systems of oppression impacts us and is to better acknowledge the systemic barriers to fully centering the and experiences of people with intellectual disability, particularly those that are multiply marginalized, in our There is an from disability leaders well as leaders in and other social justice to is who has the power in the in research as well as the to We will about inclusive in many of our and at the 146th AAIDD Annual Meeting and and there are recognizing the of people with intellectual disability to be of the and outcomes of But, what if we inclusive and and did not if the in our systems was people with lived experiences their to be an and a of the the and that is intended to impact their it I a critical lens to my work over the past focused on developing theories of self-determination and advancing and my has been to outcomes as by members of the disability community (e.g., community However, of my research have not been in with people with intellectual disability across all of the research process. This to people with intellectual and developmental disabilities, particularly people with intellectual and developmental disabilities who also experience other marginalized from the of and of that research and the of The of research that and engage members of the intellectual disability community as is although exist (e.g., et al., 2020; et al., et al., et al., et al., including many that will throughout the 146th AAIDD Annual Meeting and Conference. systemic barriers related to inclusive and recognizing multiple of across all of research are inside the research Further, there is data on these the to for equity and inclusion. This to the White, the of research the of research the of policy, and the and of outcomes et al., In my own work advancing who have the power and privilege to shape this to to engage in fully and work all are and across all of research is at multiple and will continue to take time, and of power and privilege on my I that as a can continue to challenge to that research is that is and that is by people with lived experience, and that people with lived experience have opportunities to be and if they so I believe this can support the of systemic the inequities and of in research, policy, and practice is rooted in and policies and by privilege as by our current systems. we still many disabilities, including intellectual disability and by in domains (e.g., intellectual social there are but are they is the always those that and in ways that are of social people with intellectual disability and were research, and would we still these as or would we be about and how supports can be to each could if we from and approaches to if I focused on how we out the and re-envision systems in a that all as and all as of of disabled experiences in research and the research have become more and more to me, given my in my personal and professional life. I have had the privilege of to as I it was my and experiences as a newly disabled person that me to self-determination However, my graduate I myself as a and not as a person with lived experiences, because I recognized at some in my that I experienced when I was the only disabled person in the I a perspective of to at the to and be in systems. as a White, cisgender an intellectual or developmental disability, I had the privilege of to I first I had no with a disability. There like et al., I was as the disabled person because I my and health though the was the outcome was me the need to to the for a this became and as I experienced in my health needs over the past that my support needs much I also about my disabled and I never realized the that would and as I have had more experiences with not only related to ableism but also sexism, I have realized how deeply rooted of like the White, person and how much I but also how much they This has my to how all the are so rooted in our systems and and personal intent, systems of oppression lead to marginalization of diverse voices and funds of As I have to more on how I can and in existing to dismantle I realized that I could not I was to who I was and my multiple identities and to have cultural the work to do so is personally and in existing systems. The ongoing question I I the collective question we will is how to dismantle the systems that the need to and to existing systems of oppression and create new systems that and and advance all what do we the intersectionality of disability, in shaping systemic barriers and biases there are so many opportunities to work in to promote systemic and the on systemic barriers, systems of oppression, and and is the if we start to call out the of ableism and all systems of oppression and our in existing we take small and and steps to be and to all of our work in this we these can we support and the of leaders to systems of oppression and advance a different to advance equity and and will not a is not my is there a This is I have through my ongoing I want to all of us to how to engage in work on a to create more elevate disabled voices, and these efforts throughout our research, policy, and practice. I all of us in this or this to think about how we center marginalized voices, experiences, and funds of knowledge and create space and pathways to shift systems of power and privilege to enable equity and inclusion for

Intellectual and developmental disabilities, 2022 · doi:10.1352/1934-9556-60.6.520