Peter Park, Human Rights Activist

What does someone do after being forcibly institutionalized for 18 years because they were labelled as having an intellectual disability? In the case of Peter Park, he chose to become an advocate for other people with disabilities to make sure this inhumane treatment wouldnā€™t happen to anyone else. Peter co-founded the Ā nearly forty years ago and helped to close Ontarioā€™s last institution for people with developmental disabilities.Ā Peter continues his work today advocating for the rights of people with intellectual disabilities.

Recently, Peter was part of a community-campus partnership to create a training video focused on making research more accessible.

I sat down with Peter Park to pick his brain on the term “research”, his new training video, and some tips on how to make research more accessible to individuals with intellectual disabilities.

Research is a dirty word in some circles

When asked how academics can make their research more inclusive, Peter replied, ā€œNumber one is figuring out how to phrase it so itā€™s not framed in the word research.ā€ Peter added that ā€œresearch is sort of a dirty wordā€.

Because people with disabilities have frequently found themselves as researchĀ subjects as opposed to research participants and collaborators, the term “research” can be seen as exclusionary. It’s challenging to think of a term that might replace “research” (Peter and I tried), but at the very least, it is important for researchers to know that the term may come with negative connotations for individuals with disabilities.

Of course, just because the word carries a negative connotation, that doesnā€™t mean that academics and people with disabilities shouldnā€™t team up to explore ways to make a positive impact on the lives of their peers.

For Peter, working in equitable partnerships with academics and community has been part of his advocacy work. Specifically, Peter has worked for years with Sue Hutton, Respecting Rights Coordinator with the ARCH Disability Law Centre, and together they co-founded a project called: , which provides innovative, accessible rights education to persons labelled with intellectual disabilities and their support networks. Sue and Peter have also published several articles about self-advocacy in the disability community (see a recent example of theirĀ ).

Nothing about us without us! And that includes research!

Sue Hutton, Respecting Rights Coordinator at the ARCH Disability Law Centre

Recently, Peter worked with Sue to deliver a keynote speech at the in April 2018. The theme of conference was ā€œResearch that Includes: Toward more inclusive approaches with persons with Developmental Disabilities.ā€ For this conference, Peter and Sue designed a keynote speech titledĀ “Nothing about us without us! And that includes research!” This speech was structured as a conversation between Peter and Sue with the purpose of “looking back and looking forward” at inclusive practices for research with people with developmental disabilities.

As part of this presentation, Anna Przednowek, a past CFICE Research Assistant (now an Assistant Professor of Social Work at Nipissing University), teamed up with Peter and Sue to create a training video based on Peter’s keynote address. The purpose was to create a videoĀ that could be publicly available and accessible to self-advocates, disability activists, students and professors teaching courses in research methods, Developmental Services Worker programs, and Schools of Social Work and Disability Studies who are committed to centering the voices of people with lived experiences and working toward promotion of inclusive research practices, social justice and human rights.

When asked about working on the video, Peter brought up the fact that it was a little scary for him at first. He didnā€™t know quite what to expect from the process. However, he did mention the importance of being approached right from the start of the project. This allowed for an inclusive and respectful team environment.

Encouraging inclusion in research with people with disabilities

While the training video is still in the works, Peter had a few ideas for how academics can make their research more accessible in the meantime. The first is to create content with a different point of view in mind — thinking about how one’s research will be received and understood by individuals with intellectual disabilities can be a great starting point. Writing articles or other research content in plain language is another way to make research more accessible. Sharing content in other formats such as through video or podcasts can be a good method too.

From Sueā€™s experience writing and doing presentation work with self-advocates, she has learned to take more of a back seat and practices ā€œsharing the microphoneā€ with those whoā€™s voices should be the loudest: People like Peter who are the actual experts in the field of their lives. Sue notes that when we give self-advocates this ability to direct the research and work, innovative and more inclusive means of sharing research can develop: ā€œAllowing self-advocates to direct us rather than us directing self-advocates is something we can all practice. Peter is the one who encouraged me to do more graphic illustrations. He requested that we have graphic note taking at meetings so that anyone who does not read would be able to review the minutes in a graphic format. When we published an article on the history of institutions together, Peter said we needed to tell his story in images, and requested we create visual artifacts of some of the more challenging experiences in the institution. Together we developed visuals to make the story accessible for those who donā€™t read. Without Peterā€™s direction, we wouldnā€™t have been able to reach as many people and have the impact of his story.”

Finally, Peter reminds us that remaining accountable to the community the research is trying to serve is one of the most important ways of ensuring the research stays accessible. As Peter noted, ā€œWe need something thatā€™s real, something that people can relate to, and understand right in the moment.ā€

Hopefully this article serves as a reminder that we all need to continue to strive to be as inclusive in our research work as possible. And as a side note, if you come up with a better word for research, let Peter and me know!

Magda Goemans and Anna Przednowek, two long-time CFICE research assistants, talk to CFICE about how continuous Community-Campus Engagement funding has impacted their experiences. Both speak to how continuous funding allowed them to immerse themselves in the community work, to make connections for future careers, and to strengthen their own activism.

That said, funding can sometimes be fraught with different tensions, like when they find themselves in a room with community partners who may not be getting compensated in the same way the RAā€™s are.

Listen to our podcast or read the transcript below for more!

Community-Campus Engagement Funding: A Student Perspective Podcast Transcript

Chelsea: Hello, and thank you for joining us. This is a Community First: Impacts of Community Engagement (CFICE) podcast. My name is Chelsea and I am really excited to introduce this series on Campus-Community Engagement Funding, where we sit down with people from community organizations, students, and administrators, to get their perspectives on the ins and outs of CCE funding.

Itā€™s important to remember that itā€™s not just academics and community leaders involved in campus-community engagement. Students can often be the backbone of a community-campus partnership. Today weā€™re joined by two people who have worked with CFICE as students for a number of years. Iā€™d like to welcome Magda Goemans and Anna Przednowek.

So, Magda, letā€™s start with you. Iā€™m hoping you can tell me a bit about your roles with the CFICE project.

Magda: So Iā€™ve been an RA with CFICE for about 5 years now, and Iā€™ve taken on two very different roles. So the first year I was an RA, I worked directly with a community partner within the Community Environmental Sustainability hub. It was a really amazing experience I had with that community partner; they were called Sustainable Living Ottawa East. They have been advocating for more sustainable measures in a redevelopment project occurring in their neighbourhood. So that gave me a lot of opportunities to learn about their work and hopefully assist with their work. And then the last two years, Iā€™ve been working as an RA with the evaluation and analysis working group. Through that, weā€™ve had a really good opportunity to look at what weā€™ve learned from the first phase of CFICE and Iā€™ve been helping along in gathering those learnings, analyzing, and hopefully putting out some useful outputs that have really helped us on different themes to better understand from our contexts.

Chelsea: Okay, and how about you Anna?

Anna: So I have been involved with CFICE since 2015, for the first couple of years and still continuing now, Iā€™m the coordinating research assistant for the Violence Against Women hub and working with Diana Majury the academic lead, and then some really amazing activists in the field of anti-Violence Against Women across Canada, and on demonstration projects with them. So more recently I have become the RA as well, transitioning into the Community Campus Engage Canada (CCEC) position, and here weā€™re looking at aligning the different institutions such as funders, non-government organizations, and academic institutions.

Chelsea: Moving on to the topic of funding, Iā€™m wondering what each of you have learned about campus-community engagement funding during your time with CFICE. So, back to you Magda.

Magda: Well I feel like Iā€™ve learned a lot about funding, just from my own personal experience and through some of the work that weā€™ve been doing in terms of the analysis of our learnings from the first phase of CFICE. One of the big things Iā€™ve found, which is so obvious, is that funding is so crucial to advancing community-campus engagement on so many levels and in so many different ways. Obviously as a student, Iā€™ve been able to understand that from that perspective. Iā€™ve also spent a lot of time as a student looking at the experiences of community partners, and from my vantage point, hopefully understanding a bit of their perspective as well. On this broader level, access or lack of access to funding, for CCE, that often reflects power relations between institutions and community members, faculty, students, that kind of thing. Ease of access to funding helps to demonstrate respect for community partners. Weā€™ve seen that time and time again. Whereas in the opposite situation, where there are barriers to funding, administrative hurdles, if thereā€™s just this huge time lag in terms of getting funding, that tends toā€¦give the appearance of devaluing community research, which is of course the last thing institutions would want to do.

From my own perspective, Iā€™ve found that longer term funding as well makes such an impact on communities and as a student, on students as well. That continuous funding, knowing itā€™s there for several years, has added such stability to my day-to-day work as a student, and as students weā€™re always balancing our schoolwork, our studies, potential teaching, other things going on, family life, and having that financial stability of an RAship has made a huge difference for me.

One other thing Iā€™ll just mention is, going back to what I was just talking about in terms of funding being related to power and different opportunities. I have been aware of that, particularly in the first three years of my RAship, when I would sit in a room with community members, directly working with them, and I did have moments of discomfort, thinking, ā€˜Iā€™m being paid for all the time Iā€™m spending here, and the people around me are not necessarily receiving the resources that they need for administrative work, perhaps attending meetings, things like that.ā€™ So thatā€™s been my experience in general.

Magda Goemans facilitates a session at CFICE’s January symposium.

Chelsea: And what about you, Anna, do you have similar experiences in that way?

…our community partners felt like they were building capacity within their own communities and their own advocacy in communities through supporting students that had a similar agenda. They saw this as students taking on future work within their own communities.

Anna: Funding can be a benefit and a point of tension, as Magda had previously talked about. So in terms of the benefit, the projects that we had funded are probably projects that agencies typically wouldnā€™t have been able to fund themselves or wouldnā€™t be able to tackle in their every day front-line work, especially in the Violence Against Women [field] because some of the resources that agencies have are so stretched, so itā€™s been kind of a nice thing to be able to step in and contribute and support the work that community partners have been doing. But certainly a point of tension as Magda has mentioned as well, has been listening to some of our community partners and also evaluating some of the data that Magda had talked about in Community Campus Engagement and putting community needs first, is that for example research assistants might be getting paid more for doing their research assistant hours than community partners getting paid for doing their expertise level work as a community partner. So as a student, thatā€™s been a huge learning curve and a huge point of learning for me, to have that ethical approach to Community Campus Engagement, especially when it comes to funding.

Certainly getting reimbursed is something that has been a point of tension as well, as Magda had alluded to. Being respectful to community partners and ensuring that they get reimbursed for participating and contributing their time and resources, etc., in a timely manner. I think the other piece I found that was really kind of exciting about us was our research assistants in the Violence Against Women hub have been predominantly handpicked by the community partners as well, so I thought that was a really interesting thing. Even though community partners didnā€™t hold the funding per se, they still had a choice and autonomy in choosing the people they wanted to work with which I think was really important. Quite often they were people who shared identity or shared ideas of activism, so that was something that was of great importance and of great interest as well.

And also, our community partners felt like they were building capacity within their own communities and their own advocacy in communities through supporting students that had a similar agenda. They saw this as students taking on future work within their own communities.

Anna Przednowek presents on CFICE Violence Against Women research at C2UExpo 2017.

Chelsea: I think weā€™ve kind of touched on this a little bit, but Iā€™m wondering, from the student perspective, what does CCE funding more broadly mean to you? Whatā€™s itā€™s significance?

Working in this kind of a community-campus partnership environment has definitely provided me not only with some new experiences, but with some connections to potentially future research or future career opportunities…

Magda: Well I have to say being funded as an RA and doing CCE work, this has been an incredible opportunity as a research assistant. Iā€™ve literally gone beyond the office, beyond the classroom, and I believe Iā€™ve had opportunities through this funding that I otherwise would not have had. Also, being an RA working in a CCE environment has exposed me to many people I would not have talked to otherwise. We know as students, particularly PhD students, we tend to go in our little caves, and work in isolation. Working in this kind of a community-campus partnership environment has definitely provided me not only with some new experiences, but with some connections to potentially future research or future career opportunities, etc. Just as I was mentioning before, that continuous funding has supported that. Iā€™ve been able to maintain a momentum in my connections with people and a momentum on the projects Iā€™m working on, without having to cut things short within short pieces of time.

Anna: I think similarly for me, it is the continuity and the opportunity to immerse myself in community-campus engagement. As a practicing social worker, I come from a community background, so it was actually really interesting for me to be on the academic side of this partnership, because typically I would be the community person who would be involved in these campus-community engagements. But one of the things funding certainly has provided is the opportunity to immerse myself, which I probably wouldnā€™t have had if I was working a full-time or part-time job off campus to fund myself through my education, and also trying to pick up and do the community-campus engagement as a volunteer or a side-on. I think what this has provided me with a really amazing opportunity to be able to immerse myself in that community and work more closely with both academic and community partners and getting to know the academic piece of it as well, which I think is really interesting for someone whoā€™s interested in working in academia in the future. I also found this was a mentoring experience, that when I do end up working in academia, this was sort of like three years of mentoring experience that I got, of how to do better, how to do well, how to do a community-first Community Campus Engagement, which I think that part is invaluable. But Iā€™m glad it came with funding.

Chelsea: Thatā€™s great, thank you both so much Magda and Anna. It was great to hear both of your perspectives. This has been a Community First: Impacts of Community Engagement (CFICE) on campus-community engagement funding. Please join us next time to hear from an administrative perspective on CCE funding. Weā€™ll be hearing from Genevieve Harrison, the administrative guru with the CFICE project right here at ŠÓ°ÉŌ­““.

Talk to you then!

As part of our celebrations for International Women’s day, we’re featuring one of our many smart and hard-working female CFICE researchers for this month’s Humans of CFICE piece:Ā Anna Przednowek.

is a PhD Candidate at ŠÓ°ÉŌ­““ Universityā€™s School of Social Work and CFICEā€™s current Violence Against Women (VAW) Research Assistant (RA). Anna first became involved with CFICE unknowingly. Because she missed being connected to her community, she decided to start volunteering with the GottaGo Campaign, one of CFICEā€™s community partners. Through this role she became connected to the CFICE project and was hired as an RA.

Prior to CFICE and pursuing her PhD, Anna worked with children and youth with intellectual and developmental disabilities, and adults and seniors with dual diagnosis of developmental disabilities and complex mental health needs. As a clinical Social Worker in a community setting, Anna provided supportive counseling and behavioural interventions to those with complex behavioural needs.

Anna has a passion for this work, and the complex problems faced by these individuals and their families. CFICE has allowed her to work on the receiving end of community and university partnerships.

Anna believes that CFICE is a great way to get to know people in academia as well as within the community. ā€œI am a community girl, so it is really nice to foster relationships with people in the Ottawa community,ā€ says Anna. CFICE is important to Anna because it has given her the opportunity to practice community-campus engagement (CCE). Through CCE, she is able to stay connected both with the university community and the external community.

Anna believes that collaborative relationship skills are needed to engage in effective CCE. ā€œFacilitating relationships with community partners is really important and being transparent in the work that you are doing, not necessarily bringing what youā€™re going to be doing, but it is really about what they are doing and how we can work in partnership and collaboration. How we can support the mission that the community has?ā€ Anna believes that being an RA is important during oneā€™s PhD, as it provides experience and an appreciation of community connection within an academic setting.

Annaā€™s research connects with VAW through many commonalities and looks at the bigger picture: violence. Her research is based on violence within caregiver relationships and mothers who care for adult children that have intellectual disabilities who experience violence in their care relationship. Through her clinical and community work, Anna has seen the impact of violence on mothers who are responsible for their adult children with intellectual disabilities. She has seen firsthand other’s assumptions of how mothers should care for their adult children and the impact of their experience of violence.

Working with VAW has provided Anna with another perspective and has helped her build the skills needed for her research. Anna hopes her research will closely resemble and bring justice to capturing their experiences.