Celebrating Disability Pride Month

July is Disability Pride Month and here at AFP Greater Madison we wanted to highlight some of our members and close connections that are part of our Madison community and are also making a difference in their own communities!

The AFP Greater Madison chapter continues to improve our vision of the world through an IDEA (Inclusion, Diversity, Equity & Access) lens and we are grateful to all of our members and friends, including Lori and Jason, for sharing their experiences with us.

With that being said, we are always looking for insight, stories to share or advice from all of our fundraisers of varying backgrounds and experiences. Keep us in the loop and share your story today, right here!

Hear more from Lori Werbeckes (Wisconsin Council of the Blind & Visually Impaired) and Jason Beloungy (Access to Independence) below as they share about their work, the communities they serve and other thoughts on the community of folks with disabilities.

Lori Werbeckes
Fund Development Director, Wisconsin Council of the Blind & Visually Impaired

Tell us a little about the work you do: I’m the Fund Development Director for the Wisconsin Council of the Blind & Visually Impaired. The Council offers vision services, educational programs and advocacy to expand and sustain rights for people in Wisconsin who are living with vision loss. Vision services include rehabilitation, access technology classes, support groups and low vision evaluations that are tailored for the unique needs of each individual. We are a statewide organization that was founded 70 years ago for the purpose of legislative advocacy. That focus is just as important today as we strive to gain and protect the rights of people with vision loss to vote, access safe transportation and meaningful employment, receive quality health care, and live in communities where pedestrian safety is a priority.

Can you share something you are most proud of professionally: When I’m successful in finding a new sponsor or business to support the Council I feel gratitude to that business, of course, but also feel like I’ve played a role in expanding their awareness into the world of people who are blind or visually impaired. The more we absorb other’s experiences, the more common ground we can find. 

Given the challenges for the community of folks with disabilities, have you seen a change in donors, giving, and support (especially recently considering the pandemic)? Our supporters have continued to be generous during the pandemic. Vision loss affects more than 100,000 people in Wisconsin and that number will increase every year. Many of our donors know someone with impaired vision or are experiencing it themselves. They see the challenges their loved one is living with and then, after visiting the Council, see the significant value of Council services. They learn first-hand that a gift to the Council makes a tremendous impact for individuals!

What are you hearing from your donor communities and those in the populations you serve? More people are becoming aware of the inequalities people with impaired vision and other disabilities face in their daily lives. Whether it’s inaccessible voting places or unsafe sidewalks and intersections, the Council works hard to educate legislators as to why having equal access is important for our communities and vital for people with disabilities. Sharing personal stories experienced by people across Wisconsin brings these issues to light in a way that resonates with our supporters.

What do you appreciate most, either personally or professionally, about efforts to help folks with disabilities in our Madison/Dane County community? Friends and colleagues who live with vision loss have a wealth of experiences and knowledge to share that can benefit the general population. Extending invitations to people with disabilities to serve on governing boards, listening and sharing their lived experiences in ways that strengthen our communities, and including marginalized folks in discussions that affect their daily lives will benefit all of us. I’ve seen some impactful examples of that in Dane County and hope to see many more.

Jason Beloungy
Executive Director, Access to Independence 

Tell us a little about the work you do and briefly describe some of the different challenges you face:Access to Independence (www.accesstoind.org) provides advocacy, resources, and services for people of any type of disability, and of any age, in south-central Wisconsin. In addition to being a truly cross-disability organization, what makes Access to Independence unique is that it is a consumer-run organization. No less than 51% of the board, management, and direct-service staff are people with disabilities. Our agency does a wide variety of services such as advocacy, skills training, assistive technology, and institutional transition. One challenge we face is our effort to be an equitable and inclusive organization, internally, and in our communities. We have invested time and resources to focus on this long-term journey, with the support of EQT by Design. We have a lot of work to do to ensure we have an organizational culture where people of any disability, and any identity, feel welcome to use our services, and to work or volunteer with us.

Can you share something you are most proud of professionally: I’m incredibly proud of the impact of Access to Independence. Not only are we making a difference in thousands of people’s lives through direct services, we’re engaging in community impact work like systemic advocacy, community education, and community collaboration. We have also launched a new line of Accessibility Services (https://www.accesstoind.org/accessibilityservices.html)  that are specifically for businesses, organizations, governments, and groups, to assist with improving accessibility and inclusion of people with disabilities. Our consultation services include addressing accessibility in existing buildings and spaces, as well reviewing blueprints and designs for new construction; festival and event accessibility; and evaluation of programs and services. We are also moving forward with adding website accessibility consultation services. Additionally, Access to Independence provides technical assistance with training, policies, and event planning. These services not only support entities to serve more customers and patrons, they build more inclusive communities.

Given the challenges for the community of folks with disabilities, have you seen a change in donors, giving, and support (especially recently considering the pandemic)?  I believe that a big challenge is attitude toward people with disabilities. Federal, state and local systems, and too many organizations, rely on a picture of pitiful and helpless disabled people. This attitude results in underfunded and broken systems, and further marginalization of people with disabilities. Another challenge is what some in the disability community refer to as “inspiration porn”, where everyday activities of people with disabilities are viewed as inspirational, rather than simple equity. I believe that these challenges limit support of donors to do just enough to help people, rather than substantial support for transformational, and intersectional change. We have not seen changes in giving in response to the pandemic, but donors have valued our ability to adjust how we operate to ensure access to our services.

What are you hearing from your donor communities and those in the populations you serve? We’re hearing a recognition that more is needed, which is further motivating donors. We have also seen a growth in new donors. Some donors are just hearing about us for the first time, and a number of new donors are giving back after they, or their family member, utilized our free services. What we’re hearing from people with disabilities in the communities we serve is that systems designed to support them, are not working well enough, or leaving them behind. Whether it is income, housing, education, employment, or long-term care (just to name some), we hear directly from people who cannot access those systems, or seek advocacy skills and support to receive what the systems are intended to provide.  

What do you appreciate most, either personally or professionally, about efforts to help folks with disabilities in our Madison/Dane County community? I appreciate the collaboration that is happening to address community accessibility and inclusion. Access to Independence is partnering with Downtown Madison Inc (DMI), and the city of Madison’s Disability Rights Commission, to tackle disability-related systems, projects, and events. There is a growing awareness that minimum accessibility is not enough, and that public and private partners are needed to address the barriers that keep disabled community members from enjoying the benefits of Madison and Dane County. Access to Independence is thrilled to be engaging public and private partners to listen and learn from people with disabilities, and leverage resources for fully accessible communities that are inclusive to people of all disabilities, ages, and identities. 

Anything else you’d like to add: There are a few events I encourage members to attend to understand the value of the disability experience, and to help spread the word:

·        The Disability Pride Festival, which is hosted by Disability Pride Madison, is the annual celebration of Wisconsin’s Disability Community. On July 30th, from 12-5pm at Warner Park, come and enjoy entertainment, food, adaptive recreation, and local vendors. https://www.disabilitypridemadison.org/festival-2022 

·        Downtown Madison Inc (DMI), with support by Access to Independence and the City of Madison, is hosting a one-of-its-kind Accessibility Design Forum. The virtual forum will bring together architects, clients, and people with disabilities to discuss how we improve accessibility in our built world: https://downtownmadison.org/event/accessibility-design-forum/#!event-register/2022/7/26/accessibility-design-forum-in-person-networking 

·        Artists Beyond Boundaries is a unique art event that celebrates the talents of artists with disabilities: https://artistsbeyondboundaries.weebly.com/