Advocacy and Independent Living

As we approach the 2018 midterm elections, disability advocates are continuing their work to make sure that lawmakers and policy influencers know how different issues affect people with disabilities. Advocacy is an important part of the Independent Living and Disability Rights movements, and has been since the beginning.

Individuals with disabilities are the best experts on their wants and needs, and have the right to make their own choices to fulfill those needs. If they are unable to fulfill a want or need, advocacy is the answer. An important part of advocacy, no matter if the goal is to help one person or many, is establishing a confident voice, developed and supported in a community of peer support.

There are many ways to help people with disabilities develop advocacy skills, and one of those is RTC:Rural’s Advocacy Skill Building Toolkit. The Toolkit is a collaboration between BASE, an affiliate of Summit Independent Living in Missoula, MT, the Association of Programs for Rural Independent Living (APRIL), and RTC:Rural staff, and was developed in response to the needs and interests of CILs and other stakeholders.

The Toolkit is available free of charge by following this link to the Rural Disability Resource Library:

Advocacy Skill Building Toolkit

The toolkit materials, facilitated in a workshop format, give participants the opportunity to explore their voices, build confidence, and display their skills both verbally as well as in written form. The intent is to provide a safe space among peers and trusted facilitators to introduce the concept of both group- and self-advocacy.

The Toolkit includes a facilitator guide, worksheets, and PowerPoint slides to guide facilitators through conducting the workshop. The workshop is designed to be conducted as three 2-hour sessions or modified for different lengths of time as needed.

The Advocacy Toolkit also includes the following How-To Guides, which can be used as stand-alone resources to help individuals and groups advocate in their communities.

How-To Guides:

• Writing Effective Letters to Decision Makers
• Creating Your Personal Testimony to Influence Policy Change
• Finding and Using Data for Advocacy

There are also examples of persuasive writing and personal testimony. Other advocacy-related resources are listed in Appendix C of the Advocacy Skill Building Toolkit Facilitator Guide.

Advocacy and Voting Resources

For those who want to use their advocacy skills to comment on a national or state-level issue, here are some resources that may be useful:

• American Association of People with Disabilities Voter Resource Center—REV UP Campaign Voter Resource Center
  • A list of resources to help you with voter registration, educating yourself and others about voting barriers for people with disabilities, and resources and tools for casting a ballot and access to the polls.
• Find My State or Local Election Office Website
  • Your state’s voting information, including information such as the elections calendar, ballot measures, voter registration forms, and can get directions to your local polling place, as well as other related information.
• Midterm Congressional, State, and Local Elections
  • Information about the upcoming midterm elections near you.
• S. Election Assistance Commission- Resources for Voters with Disabilities
  • A list of voting accessibility resources from the U.S. Election Assistance Commission.
• Administration for Community Living- Voting Resources for Older Americans and People with Disabilities
  • Many of the resources on this page of the ACL website are also on the above websites, but this one includes a few resources specific to older voters.

#CripTheVote

On May 20, #CripTheVote is having a Twitter chat about “Making Activism Accessible.” Visit their blog post for more information on how to join, to see the questions, and to participate. Even if you don’t use Twitter, there is still a way for you to follow along in real time—click on the following link for more information:

#CripTheVote May 20 Twitter chat: Making Activism Accessible

RTC:Rural’s new Peer-to-Peer Series call for Living Well and Working Well with a Disability Facilitators was held on April 26, 2018. Twenty-six participants joined the conference call and shared their experiences, challenges, and successes as facilitators. The topic of the first call was managing group dynamics.

“A key difference between facilitating and teaching is that as a facilitator, you are not placing yourself in the position of expert or leader,” said RTC:Rural Training Associate Maggie Lawrence, who organized the call. “Facilitators help to guide the session and keep on track, but the control of the curriculum is given to the group. This means that the workshop sessions are heavy on discussion and peer support, and therefore each group can have a different feel and different dynamics.”

One of the more difficult tasks facing Living Well and Working Well facilitators is navigating and managing group dynamics, as participants bring so many different experiences and stories to the workshop. The process of group cohesion, that feeling of shared understanding, is always changing and can be difficult to foster.

Facilitators on this call shared experiences of having workshop participants who felt like they didn’t belong, or that they shouldn’t talk because their situation “isn’t that bad.” For example, one facilitator shared, “I have found in a few of my sessions I may have some people living with disabilities that are quadriplegic, paraplegics and wheelchair users, and then I have the individual who may have a visual disability or a slight hearing loss, and they come to me and they say, I feel guilty because my disability isn't as severe as that person's.” Said another facilitator, “[Participants say,] ‘I don’t think I belong here. I don’t feel my disability is severe enough to be here.’“

How do you both acknowledge and honor difference, and at the same time establish a sense of equity and togetherness? In response, facilitators on the call shared their experiences in helping the participants process this feeling of not belonging and guilt. Shared one facilitator, “… Over time, [participants] realize that it’s just about handling your disability no matter what it is. And as a facilitator, I think it’s good for us to let people know that everybody’s disability is a challenge to them, and it’s not a competition. We’re here to help each other live better with our disability.”

Another difficult challenge that facilitators discussed is dealing with what you can’t plan for. For example, six or seven weeks into the workshop a participant or facilitator might have a dramatic life change or a crisis that can affect the whole group. How do you support the needs of the individual and the group as a whole? In response, facilitators shared that they will take time in the next workshop to discuss the event, and let participants share their feelings and experiences in the group. “Recognize that this is a learning experience for the group,” said another facilitator. “Life throws us challenges, and when we’re goal-setting we’re going to meet barriers. We might have crises or acute events happen, and we need to work through it.”

“What was particularly amazing about the call was to hear how, through skill and trust, these very challenges can lead to huge successes,” said Lawrence.  “One facilitator told the story of a participant who, during the course of the workshop, experienced a divorce and homelessness, but she made such progress with the support of the group and CIL staff that she was able to get an apartment, a job, and become a successful self-advocate. Another facilitator shared that the workshop is sometimes the first time people recognize that their experience and their voice matters.”

It is clear that Living and Working Well facilitators are immensely skilled, and that opportunities to support one another are very meaningful. “It was wonderful to hear other facilitators’ success stories and some of the challenges they may be having and to be able to share with each other,” said one facilitator.

The next Peer-to-Peer Series call will be on June 28. Topics discussed will include outreach, recruitment, and program sustainability. These calls are free, and open to any Living and Working Well facilitators, though Lawrence does ask that you register. Stay tuned for a registration reminder in early June!

The Living Well and Working Well with a Disability programs are evidence-based, peer-led health promotion workshops provided by organizations that serve people with disabilities. RTC:Rural provides training and certification for Centers for Independent Living (CILs) and other organizations to conduct the workshops. Both programs are based on the Independent Living philosophy, which recognizes that individual choice and self-determination are essential components of living independently in the community.

Since Living Well began in 1995 and Working Well in 2003, over 1,300 facilitators have been trained in 47 states, in turn serving over 10,000 adults with disabilities. To learn more about the development of Living and Working Well, visit the RTC:Rural website project pages here:

• Living Well with a Disability
• Working Well with a Disability

Interested in becoming a Living or Working Well with a Disability facilitator or provider? Visit the Living & Working Well with a Disability website or email livingwell@ruralinstitute.umt.edu for more information, resources, or to be added to the Living and Working Well listserv.