“We’re visioning what full inclusion and indepedence for people with disabilities might look like, so that we can take action to make it a reality for ourselves,” said Duncan Wyeth, who is both the executive director of the Michigan Commission on Disability Concerns and vice chair of the UCP board of trustees. “We are moving forward,” he added, “and not allowing external forces to ‘dis’ our ‘ability.’”
In October, UCP released the primer, The State of Disability in America: An Evaluation of the Disability Experience by the Life Without Limits Project, a 65-page book that includes chapters on rights, healthcare, education, employment and housing, as well as personal stories and tips on organizing for change. Disability rights advocates and trailblazers also contributed their informed insights to the volume.
Can We Talk?
The last half of the 20th Century was a time of enormous progress for Americans with disabilities and their families. Despite the improvements, however, many people with disabilities still face pervasive poverty, joblessness, forced institutionalization and needless dependency. As a result, they have less hope for the future than before the passage of the Americans with Disabilities Act (ADA). Moreover, 17 years after the ADA, advancement towards first-class citizenship for Americans with disabilities has come to a virtual standstill.
Unwilling to accept “what’s not right” about disability in America, UCP initiated Life Without Limits (formerly the Big Sky Project) led by Tony Coelho, a former congressman and former chairman of the board of the Epilepsy Foundation of America. The central aim of LWL is to create a new vision for the future for individuals with disabilities, to increase public awareness about the challenges that lie ahead, and to develop strategies, initiatives, programs and policy for a brighter tomorrow.
After we assessed what is yet to be accomplished within the disability movement, our next step was to hold a series of conversations between UCP affiliate leadership, staff, families, public policy experts, disability advocates and corporate leaders. We posed the same question—”What’s Not Right?”—to these focus groups. We also created a “focus group in a box” kit that we sent to hundreds of organizations nationwide, so they could host sessions and email or fax us back the results.
This way, thousands of people could take part in the conversation. Their feedback led to the creation of a Custom Forecast Map, developed by the Institute for the Future (IFTF), of what we anticipate will be future trends. Over the next decade, we believe these developments not only will affect people with disabilities, but everyone.
During several visioning sessions last spring, UCP put the map center stage at an Orlando meeting of 400 key leaders. The event was webcast to more than 125 sites in the U.S., Europe and Afghanistan. The objective was to glean what might be the best approaches to achieve the most favorable outcomes.
Presented by Dr. Bob Johansen, an IFTF distinguished fellow, the session highlighted the waves of change that will shape the lives of people with disabilities over the next 10 years. In the process, we came up with not only new terminology that expands the way in which we talk about disabilities, but also a glossary that includes our future language.
This language was incorporated into the Custom Forecast Map, which became the basis for six ‘headline stories.’ They look at current and coming scenarios that will help set the agenda for strategy and policy.
• X-People—In the near future, for example, people with limited mobility will be able to put on the HAL-5 exoskeleton suit. Fired by a 15-kilogram bat- tery, it detects muscle movement through electrical signal flows on the skin’s surface, and then it ampli- fies them to help people who have limited mobility climb stairs or lift heavy objects.
• Lightweight Infrastructures: In this scenario, a smart device could reroute around brain and spinal cord damage to help restore lost functions.
• Group Economy: Technology can help us belong to communities throughout the world, network and conduct business, regardless of our physical abilities.
• Sense making: A person caring for a friend with a disability or an elderly relative at a distance, for example, might get a call from a smart-home refrig- erator, notifying them that it hasn’t been opened today.
• Transformational Geography: Centralized call cen- ters with global reach, for instance, create career opportunities for people with disabilities, regardless of their mobility level.
• Sustainable Communities: As cities grow, urban agriculture could double to produce more than 30 percent of the food we eat.
Michelle Bishop participated in the visioning session and observed that: “The Life Without Limits Project is an important step for the disability community, which tends to focus on the past and work reactively.”
Bishop, who is the Missouri Disability Vote Project Organizer for Paraquad, added that LWL can serve as “a forum for people with disabilities to start thinking proactively about what they want to see happen in the next 10 years, to think about what they as a community want to be and to figure out how to get there.”
This will have different meanings for different people and different organizations. For UCP and its partners, it encompasses the following six “elements” that will likely be relevant to any progressive vision of the future for people with disabilities:
Believable Hope for the Future
• Energy comes from hope
• The direction we take must be guid- ed by the human spirit
Navigating the World Across Generations
• Use tools to con- nect and include everyone because all ages and all people need to feel empowered
• Form partnerships and alliances that transcend tra- ditional boundaries such as the “generation gap”
• Access and accommodation for everyone
• Aim not just for physical access, but for access to everything that improves quality of life
Agile, Potent Networks
• Link people in multiple networks
• Network communities and individuals
• Leverage virtual worlds
• Create opportunities for everyone to be engaged • Use technology to expand possibilities
Community Not Government
• Let government follow initiatives that come out of communities and networks
• Go beyond just dividing up the “pie”
As part of the public launch of LWL, corporate leaders, UCP staff and nearly 20 members of Congress convened at a luncheon briefing at the Capitol to discuss the initiative and its implications for the future. LWL has also benefited from strong partnerships with such healthcare organizations as Anthem, WellPoint, and Alegent Health Care.
United Cerebral Palsy and its affiliate network have embraced the premise of LWL in many current programs and are working with business and private-sector coalitions to incorporate projects that reflect the ‘six elements’ vision.
Online community forums, populated and owned by people with disabilities, along with families, friends and advocates are another means of achieving a unified voice that has the strength to enact change. These networks provide a unique opportunity to work with LWL partners to find solutions that are financially, socially and mutually beneficial.
“The Life Without Limits Project is all about enabling all people, with or without a disability, to live full, independent and productive lives,” said Stephen Bennett, president and CEO of UCP.
by Armetta Parker
additional reporting by Elizabeth Reitz
Armetta Parker is UCP’s director of marketing and communications.
Elizabeth Reitz is the organization’s communications specialist.
To learn more about LWL,
download a copy of “The State of Disability in America,”
the custom forecast map, or to order the No Limits. Just Life.
webcast, visit www.ucp.org