Disability and community participation: Policy, systems, change and action research
This course focuses on the intersect of disability policy, activism, and action research, and is grounded within a collaborative learning framework with disability communities. Our emphasis is placed on immersing into a critical examination of the policies, systems and practices utilized by people with disabilities to support community living and participation choice and control, as well as activism and social action initiatives to build collective power and critical consciousness.
A specific focus is placed on designing, conducting and evaluating action research projects in collaboration with community organizations, activists, policy makers and constituents with disabilities from the community. Community-based participatory research activities will center and reflect upon strategies to promote a praxis of education, research and activism to effect systems change, promote social justice, and build community and critical consciousness. To do this, our community partners will be key mentors, teachers and facilitators in and out of the classroom throughout this course. Credit Hours:4
Upon completion of this course, the student will be able to:
- Critically examine epistemological and theoretical ways of knowing, participating in, and researching the social world and social issues experienced by people with disabilities as a collective social group.
- Utilize community-based, participatory action research to identify and prioritize key issues experienced by disabled people in the areas of community living and participation, including current and emerging sociopolitical, economic, and cultural forces, trends and power.
- Apply a systematic approach to analyzing policies and social systems related to community living and participation, and their influence upon the choice, control and power of constituents with disabilities.
- Participate in and evaluate collective activism and self advocacy initiatives to effect social justice, social action, and systems change.
- Analyze disciplinary fields of action research, comparing tenets and strategies affiliated with each and their relevance and application within disability studies research.
- Compare and evaluate participatory and action research methodologies and their fit to stakeholder and community needs, and contribution to effecting systems change and/or building critical consciousness.
- Adapt methodologies, communication and outreach to accommodate the access needs and preferences of diverse participants with disabilities.
- Design a participatory action research-based project in collaboration with community partners that focuses upon a specific community living and participation issue identified by community and constituents with disabilities.
- Critically examine issues of participation, the role of research/researchers, democratization of knowledge generation, rigor, praxis, and ethical dilemmas involved in participatory action research, activism, policy development and systems change.
- Utilize a community-based approach to synthesize and apply knowledge to future participatory action research projects with disability communities.
If you do not already own them, we recommend these books. Both are very easy to get new or used online via Amazon or Half.com or other sources, and are available commonly in most book stores.
- Friere, P. (1970; anniversary edition 2000). Pedagogy of the Oppressed. New York, NY: Continuum.
- Reason, P. & Bradbury, H. (Eds) (2001). Handbook of Action Research. Thousand Oaks, CA: Sage.
- Alinsky, S. (1971). Rules for Radicals.: A pragmatic primer for realistic radicals. New York, NY: Vintage Books.
Visit the following websites with participatory action research resources:
- Action Research Resources: http://www.scu.edu.au/schools/gcm/ar/arhome.html
- ParNet: http://www.parnet.org/
- University of Bath, Center for Action Research: http://www.bath.ac.uk/carpp/
Visit the following websites for national & global disability policy issues/actions & analyses:
- Center for the Study and Advancement of Disability Policy http://www.disabilitypolicycenter.org/
- Beach Center on Disability: http://www.beachcenter.org/?act=view&type=General+Topic&id=3
- Law, Health Policy and Disability Center http://disability.law.uiowa.edu/
- Center for Human Policy @ Syracuse University: http://thechp.syr.edu/
- National Council on Disability http://www.ncd.gov & National Organization of Disability: http://www.nod.org/
- American Association of People with Disabilities: http://www.aapd-dc.org/index.php
- NCIL: The National Council on Independent Living: http://www.ncil.org/
- DPI: Disabled People’s International: http://v1.dpi.org/lang-en/
EVALUATION METHODS AND ASSIGNMENTS:
Community Report: Policy Analysis & Action Research Project: The primary learning activity for this course is a Community-based Policy Analysis & Action Research Project. Based on your interests expressed in the first class session, we will coordinate working groups of 3-4 students, each of which will immerse into an ongoing action research in collaboration with a community partner, identifying and targeting one specific policy issue to work on this semester related to people with disabilities and their civil right to live in communities of choice and to fully participate as citizens. All students also will attend the event: “Housing… a Matter of Justice”: Forum on Disability Rights in Affordable, Accessible, Integrated Housing to be held in Chicago with hundreds of people with disabilities attending so you can learn effective advocacy and network with many people with disabilities and national leaders to learn from them and share your ideas with them. Your final class “product” here will be a Community Report on your issue that will be directly used by community partners in their ongoing education and advocacy efforts—make sure your “report” is accessible to and easily used by the community!
1) Issues & Policy Analysis: 15% of grade.
a. Issues Overview: Description of the community you are working with, constituents within it, and broad issues/current priorities related to community living and participation (5%)
b. Policy Analysis: Detailed analyses of the policies MOST relevant to informing and influencing this particular issue that you plan to research for your final project. Includes critical analyses of:
i. Policy: Detailed description of key policies and relevant systems informing and influencing this issue. Use the policy analyses materials provided in class to provide a critical analyses of all aspects of the policy and its influences on disabled people.
ii. Legislative & Judicial Analysis: Description of any legislative (national, state or other) and judicial cases/decisions relevant to this project and issue targeted, what they cover/do not cover, how they are enforced/issues with enforcement, and key challenges to them.
iii. Political implications/atmosphere: what are the current political climates (national, state, local) and how are these situations influencing policy and ability to effect systems change in the issue area.
iv. Economic & funding/resource allocation issues involved (political economy influences in this sociopolitical environment).
v. Stakeholder/power analyses: Who are the key stakeholder groups (e.g., those affected by the policy in everyday life, those who are gatekeepers to services, those who oversee the policy, etc.). Who has what power? Who are the decision makers? Who’s voice(s) are at the table/who’s represented in decisions?
2) Community Focus Group & Findings Report: 15% of grade
a. PRIOR TO GROUP: Design of focus group strategy (purpose/aim, where, when, who will participate, who will facilitate; focus group guide of big questions and potential probes; strategies for making this group accessible to all participants; strategies to promote voice, active participation, and power sharing).
b. AFTER GROUP: 1) Summary and synthesis of results/knowledge generated. 2) Issue Prioritization: Specific social issue/initiative the partnership chose to focus on and how that decision was made. This may start as a broader umbrella (e.g., affordable and accessible housing) but should also contain 1 or a small set of very specific issues under this that you will target (e.g., using Medicaid waiver funds toward housing rental costs)
3) Final Community-based Policy & Action Research Project Report: 55% of grade
a. Detailed presentation of the key issue/ priority & polices (related to community living and participation) upon which the project was focused (10%). This should include:
i. Background description of the issue (e.g. what is happening and how did this issue come to be including the history and forces (social, political, economic, cultural) affecting it). This should be more detailed than the midterm brief analysis as you should have gained additional information and insights into the issue via the project.
ii. Description of the social group(s), communities and constituents affected by/experiencing this issue and their needs and preferences as voiced from within = PRIMARY STAKEHOLDER GROUP
iii. Description of additional key stakeholder and/or gatekeeper groups involved or influencing this issue: who/what are they, what are their roles and positions relevant to this issue, which stakeholders have power at which levels
b. Activism analysis (15%): Provide a critical analysis of:
i. Description of the activism taking place “from within” to address this issue, including past strategies and current and future initiatives (history to date with progress/results, actions being planned and factors influencing these)
ii. To what extent are constituents actively participating in this activism? To what extent are activists “giving the same message”; that is, do they have a strong and focused, organized voice or are there different factions with differing messages? To what extent do activists have power? Is that power recognized by other stakeholders? To what extent are activists collaborating/allying with other social groups (e.g., racial or ethnic groups, economic, gender, age, etc.) to gain power?
c. Research analysis (20%): Provide a critical analysis of:
i. Literature review on any existing/previous research on this issue, including a critique of: What can or can’t we learn from this research? Does it reflect the voice of the community/constituents? To what extent was it participatory? To what extent did it contribute to action? Where are the gaps in knowledge?
ii. Overview of the action research design & methods you used in this project, summary of results/what you learned, and, description of what worked/didn’t work, and what you learned.
iii. Proposal for a long term action research agenda. This is where you get a chance to dream and vision. The communities you worked with are committed to and already involved in research activities which may or may not be organized or build upon each other. Provide a conceptualization of a long term action research plan that could be implemented to build community and effect systems change long term. Include: design & goals of the project, proposed methods/activities, recommendations for sustaining the partnership and ownership/control within it, recommendations for increasing participation and access of constituents within the project. To frame this, you might think about applying for a grant to support a specific project (could be seed funding, foundation funding, federal funding). What might a 2-3 year future approach look like?
d. Praxis: Discuss how you would promote a praxis between action and reflection within this project (10%).
i. Action Plan of recommendations on how to share the knowledge you gained back with the broader collective groups/constituents/stakeholders so they can retain ownership and use it to effect action/systems change.
ii. Recommendations for policy change and activism given your findings.
iii. Potential funding sources to pursue to continue community work and action research: could be grant funding, system level funding, match funding, development projects, stipends/fellowships, volunteer or other asset support
iv. Appendix of resources you found valuable or useful that you want to pass on to community partners
4) Reflection: 5%:
a. A reflection (2-3 pages approx.) on your community project experience, what you learned and how it changed you as a person and your understanding of the community with which you worked.
b. A brief paper (no more than 5 pages) on your specific area of scholarship and how you would apply community-based, participatory action research & policy analyses strategies to actively involve people with disabilities and community in your future scholarship.
5) Class Participation: 10%:
Active participation is critical in any social learning, particularly in a course on participatory action research! Your attendance and active participation is part of your grade. In particular, you will be expected to:
- have read, critically analyzed and reflected deeply on each assigned reading & share questions that emerged from these with each other and with community partners
- participate in discussions in class, in the community with partners, via email and the Blackboard site, and within virtual disability social networking sites related to community living and participation
- bring in what you are learning from your community project, and synthesize with your own expertise and experience,
- create a community of learning that is supportive, respects each other’s diversity, and scaffolds and mentors each other’s learning, in and out of the classroom, particularly with and in the disability community.
Professor: Joy Hammel, Ph.D.
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