From the Desk of Jason Eckert, Executive Director, Reader’s Digest Partners for Sight Foundation
Thought Leadership: What is the big idea?
My summer reading list included Extreme Ownership, a book about how to be an effective leader. This was a difficult book to finish. The authors, two navy seal officers, ask the reader to reflect on all the things that have gone wrong in their professional lives and take responsibility for the errors no matter what. They acknowledge that the world is complicated, and that circumstances beyond our control can negatively affect the achievement of a goal. They recognize that leaders can’t control everything. Even so, they suggest the only way to grow is to ask oneself, “what did I do that enabled this to happen? Was I right or was I wrong in my actions and reactions when these obstacles emerged? When this occurs again, what can I do differently? How can I better lead people through this kind of situation to overcome obstacles and achieve the goal?” In other words, no excuses, it’s not them, it’s you.
Reader’s Digest Partners for Sight Foundation (RDPFS), like many organizations, has developed a theory of change. We ask the organizations that make up the BVI community for thought leadership, big ideas that RDPFS can support via grantmaking to facilitate systemic change. We ask all with whom we work to develop creative ideas that can be disseminated and replicated across the entire BVI community. RDPFS seeks to fund pilot projects that can evolve into a standard in the BVI community. I think about the universal implementation of the white cane or guide dog for travel training techniques, the creation of one universal standard of braille, or the advent of recorded books leading to BARD and the National Library Service for the Blind and Print Disabled (NLS). And ask, what is the next big idea?
I understand that in developing this idea things will go wrong; things will happen that its developers will not anticipate. As the idea germinates across the country people may not like it, fear it, and work actively against it, preventing the innovation from being able to take root and grow. When that happens let’s take “Extreme Ownership” of the situation. Let us ask ourselves, collectively, to embrace those challenges, understand our role in their existence, work through and learn from them. We must not use these obstacles to justify why the idea fails, but to learn what we can do differently to ensure that the next idea is the one that succeeds, benefiting the BVI community.
by Jo Lynn Bailey-Page, Audio Description Project Coordinator and Grant Writer, American Council of the Blind
After two years of meeting virtually, the American Council of the Blind (ACB) celebrated its 61st Annual Conference and Convention with the organization’s first-ever hybrid event. The convention was held virtually and in person in Omaha, Nebraska, and broadcast across ACB Media Network. From June 22 through July 8, 2022, members enjoyed more than 25 hours of audio-described virtual tours, a robust vendor exhibit hall, live tours, daily general sessions with knowledgeable presenters across the full range of issues that impact our community, and more than 100 breakout sessions organized by affiliates, committees, and sponsors.
Speakers during general sessions included Marc Workman, President of the World Blind Union, Day Al-Mohamed, the Director of Disability Policy with the Domestic Policy Council in Washington, D.C., and Talking Book Narrator Ray Foushee from the American Printing House for the Blind (APH). Many of ACB’s corporate sponsors presented live and interacted with members throughout the event. Meta and Instagram demonstrated accessibility features; Comcast introduced its latest smart television, featuring a screen reader with voice guidance for menus and to access audio description; and Walmart held a “fireside chat” to talk about accessible products.
ACB used a remote voting process, accessible to all members, to elect new officers, board members, and vote on resolutions during the convention. Key resolutions passed included:
- a call for ACB to seek systemic change in order to achieve more permanent settlement in disability rights cases;
- a call for YouTube to establish and publicly announce a date to roll out audio description features for all users;
- a directive for ACB to join with other partners to demand that the U.S. Department of Education (USDOE) issue updated and more comprehensive education policy guidance by year end, 2024; and
- a call for ACB to strongly urge the U.S. Senate to pass the bipartisan Collins-Shaheen insulin price-capping bill aimed at Improving Needed Safeguards for Users of Lifesaving Insulin Now (INSULIN), to lower the costs for people with diabetes.
As part of ACB’s new Health and Wellness Initiative, numerous breakout sessions focused on health-related topics. Throughout the program, members could “Get Up and Get Moving” at dances, on walks, and in a goalball demonstration. An early advocate for more accessible COVID-19 home test kits, ACB was able to secure the more accessible Ellume COVID-19 test kits for distribution at the convention.
Capping the convention, ACB’s annual banquet featured keynote speaker Judith Heumann, internationally recognized leader in the disability rights community. Heumann and ACB members engaged in a lively dialogue about current advocacy issues and the need to become involved at all levels to effect cultural and institutional change.
To find out more about these events, visit the ACB website link to the 2022 National Conference and Convention Program.
“During the past year, the strength of our determination and the power of our togetherness in the organized blind movement [have] transformed our challenges into opportunities,” stated Mark A. Riccobono, President of the National Federation of the Blind (NFB), during the “2022 Presidential Report” given at NFB’s 2022 Annual Convention. The 82nd Annual Convention of the NFB was held from July 5 through July 10, 2022 in New Orleans, Louisiana. It had been three years since the event had been held in person. Riccobono spoke about the continued challenges faced by blind people, including discrimination, limited access to critical information, and “overwhelming barriers throughout society.” During a period of isolation and disruption affecting everyone in the nation, the continued commitment to working together “has made all the difference to the success of blind people...”
Sessions covered a wide range of disciplines, including such topics as access technology training, advocating for accessibility, and producing tactile graphics; what’s new with Jaws, Fusion, and Zoomtext; and news from technology developers. A seminar for job seekers and career fair were held as well. An exhibit hall featured more than 80 companies and organizations, ranging from technology providers to blindness advocacy groups and service providers, to manufacturers of devices, to educational organizations, and more.
The 18 resolutions adopted at the convention included those regarding:
- “the need for Federal legislation requiring all websites and applications to be accessible;”
- “state legislation guaranteeing fully accessible vote by mail;”
- “manufacturers’ development of accessible medical devices;”
- “audio description and text-to-speech;”
- “accessible at-home medical/COVID-19 testing;” and
- “increased funding for the (government-supported) Independent Living Services for Older Individuals Who Are Blind Program.”
To read the full list of resolutions and details, the full Presidential Report and banquet speech from Mark Riccobano about “Spirit, Togetherness, and Service: The Signature of the Blind People’s Movement,” and more coverage from the convention, visit the NFB webpage on the 2022 National Convention.
September, CVI Awareness Month, calls attention to Cortical or Cerebral Visual Impairment, “the leading cause of visual impairment in children in the United States and other developed countries…” This commemoration involves sharing current knowledge about CVI and “life-changing access” for those affected by it. With CVI, the pathways of the brain that process visual information conveyed through the eyes are damaged. CVI can result in visual problems ranging from mild to severe. A child may have trouble with tasks such as responding to what they see; recognizing faces or objects; seeing part of what is in front of them; or reaching for something as they look at it. Diagnosis involves taking a medical history, an eye exam, brain scans, and other tests measuring the ability to perform daily activities or schoolwork. “For some children, vision gets better over time, but everybody is different.” Early intervention and therapy, including educational support and other special services, are a must to help children “develop and learn.” Students with CVI receive support from professionals, such as Teachers of Students with Visual Impairments (TVIs), who assess the educational impact together with a collaborative educational team that includes parents or guardians. Instruction can focus on how to increase the children’s ability to complete functional tasks, make choices, and learn successfully. Orientation and Mobility specialists (O&M) can help children to maximize safe and independent movement within their environment. Learn more from National Eye Institute (NEI) of the National Institutes of Health (NIH) about Cerebral Visual Impairment (CVI) and by checking out an article from Future in Sight entitled “September is CVI Awareness Month, so let's dive in and learn a bit more!” For suggested strategies for literacy activities and resources, visit the Paths to Literacy webpage announcing that September is CVI Awareness Month!
The 2022 Perkins CVI Conference brought together more than 170 medical professionals, educators, and families living with CVI from across the nation and around the world “to discuss the current state of CVI and to advocate for bold next steps.” Some major “takeaways” from the conference, according to the Perkins School for the Blind, include:
“CVI is a priority for the National Eye Institute:” NEI’s Director, Dr. Michael Chiang, shared that CVI research is now a priority, resulting from the CVI community’s advocacy. He covered next steps, including evidence-based guidelines for diagnosis, treatment, rehabilitation, and more. Listen to Dr. Chiang's keynote here.
“There’s transformative new CVI research underway:” Many experts are working to find out more about CVI and the brain. A research panel, including Lotfi Merabet, OD, PhD, Barbara Landau, PhD, Glen Prusky, PhD, and Gena Heidary, MD, PhD, provided updates on such topics as genetic deletion’s effects on spatial organization and learning language and measuring visual function by assessing one’s gaze.
“We need to listen to people with CVI:” Including people with CVI is essential to moving ahead. A number of individuals shared their stories, calling themselves “’CVI-ers.’” These self-advocates spoke about their unique journeys, reinforcing the unified message that “CVI deserves more attention, and kids with CVI deserve the same opportunities as other children.” Hear voices of CVI here in this video.
“The Perkins CVI Protocol is a game-changer for educators:” The Perkins CVI Center released their protocol: “A digital assessment and educational roadmap for the whole child,” aimed at giving families, TVIs, and providers the tools needed to help children. Based on the most current science, it’s vetted by medical experts and is individualized, inclusive, and set up to evolve with science advances. Learn more here about the Perkins CVI Protocol.
“All kids with CVI can learn:” Vision is not “a prerequisite to learning.” However, the “incidental learning” that occurs for “neurotypical” children is not there for those with CVI. Educators and providers explored a wide range of topics related to accessible education and services, such as the Expanded Core Curriculum, serving the 0 to age three population and families, and “collaborative assessment guidelines.”
“Help and hope are on the way.” It is the beginning of a new era in CVI, thanks to the support of NEI, ongoing research initiatives, the Protocol that adds to the tools available to make “learning easier and more tailored to kids with CVI,” and innovative thinking by educators about reaching all children.
Read more on the Perkins website about 6 big takeaways from the CVI: Collaboration for Change conference.
Cortical Visual Impairment (CVI) Collaborative Center Brings Together Educators, Medical Professionals, Researchers, and Service Providers
The Miami Lighthouse for the Blind’s Virginia A. Jacko Cortical Visual Impairment (CVI) Collaborative Center addresses this condition, the number one cause of pediatric visual impairment in developed and developing countries. The Center is a partnership with pediatric ophthalmologists from Bascom Palmer Eye Institute, Nova Southeastern University College of Optometry, and neurologists at The Brain Institute at Nicklaus Children’s Hospital. Through early diagnosis, continued assessment, and educational intervention, research has demonstrated “functional vision improvement” in students. This program provides infants and school-aged students with assessments and educational planning; direct service instruction to maximize the child’s opportunity to achieve their educational potential; family support and education; and services on site, in homes, and through outreach. Professional development is a key component as well, for TVIs, O&M specialists, therapists, classroom teachers, and staff. The inter-professional collaboration addresses CVI ‘‘in a holistic way: bridging medical diagnosis, functional vision assessment and educational intervention.” For additional information, read the Miami Lighthouse for the Blind’s webpage on The Virginia A. Jacko Cortical Vision Impairment (CVI) Collaborative Center.
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