Spinal Cord Injury Network, NSCIA Conference 2005

Spinal Cord Injury Network

Bar to separate page sections, Bar looks like a piece of chain

From Murderball to Federal Partnership
SCI Summit 2005 Hits a Home Run

It began Sunday night, May 8, with a private advance screening of the movie, MURDERBALL, at the prestigious Mayflower Hotel in Washington, DC. 200 people watched this soon to be released Sundance award winning movie about quad rugby and participated in a question and answer session led by rugby captain and MURDERBALL star Mark Zupan.

The movie, which documents the US Paralympic Quadriplegic Rugby team's journey to the Athens Olympics, was an antidote to the plethora of popular movies ala Million Dollar Baby that portray living with spinal cord injury as a fate worse than death. MURDERBALL shows real men with real lives and needs in all out sports competition.

Monday, May 9, SCI Summit 2005: Facing Issues, Creating Solutions Ô began with a welcome from NSCIA President Harley Thomas and CEO Marcie Roth and a keynote address from Dr. Margaret Gianinni, Director of the Office on Disability Policy, Department of Health and Human Services. “Dr. G.” as her staff and the Washington SCI community fondly know her, stressed the importance of solutions based thinking and action.

Because she began work on SCI and disability in the 1940's, Dr. Gianinni is uniquely positioned to highlight the gains that have been made and those that are yet possible. SCI Summit 2005 was co-hosted by the National Spinal Cord Injury Association (NSCIA) and the US Department of Health and Human Services Office of Disability Policy.

The Monday afternoon highlight was the Media Plenary to discuss bias in mainstream media and entertainment.

Moderated by Summit Co-Chair Tari Susan Hartman-Squire, panelists included Emmy award winning journalist and author, John Hockenberry; columnist Marilyn Salisbury of the San Diego Union Tribune; CBS's CSI: Crime Scene Investigation star Robert David Hall; Editor of The Ragged Edge, Mary Johnson; CBS Radio journalist and author Dan Raviv; and New Mobility Magazine Editor, Tim Gilmer.

The discussion centered on shifting media coverage of SCI to public policy rather than stereotyped fluff pieces as well as the importance of positive character images of people with SCI in entertainment. A core group formed for ongoing work on the issues raised in this plenary. Mary Johnson of The Ragged Edge and Janine Bertram Kemp, NSCIA Communications Director, will coordinate these efforts.

Summit participants joined with many Washington VIPS and colleagues Monday evening to celebrate the first ever SCI Hall of Fame Ô held at the historic John F. Kennedy Center of the Performing Arts. The evening kicked off at 6PM with a Millennium Stage performance by jazz singer and composer with SCI, Lisa Thorson and Company.

It was a stunning show and prelude to the SCI Hall of Fame. Introduced by co-chairs, Mark Johnson and Tari Susan Hartman-Squire, Robert David Hall emceed the Hall of Fame and SCI Summit sponsors and NSCIA board and staff members presented awards.

The inductees were Christopher Reeve, Benefactor (accepted by Joe Canose, Director of the Christopher Reeve Paralysis Foundation); Wise Young, Research; Rory Cooper, Technology; The Honorable Tom Harkin, Legislative; Marilyn Hamilton, Entrepreneur; Randy Snow, Sports; Barry Corbet, Disability Awareness/Activism (accepted by Jeff Leonard of the Leonard Media Group); Duane French, Corporate/Government Executive; Teddy Pendergrass, Entertainment; and John Hockenberry, Media.

The nuts and bolts work of the SCI Summit began Tuesday morning as participants met in five breakout areas to assess barriers and develop solutions in five areas: research, rehabilitation, technology, community living, health promotion, and rehabilitation.

Summaries of barriers and solutions were presented to officials from relevant federal agencies and participating organizations began to develop partnerships with key agencies.

For example, one barrier affecting all five breakout areas is lack of data on people with SCI. Department of Homeland Security(DHS) and Community Medicaid and Medicare Services (CMS) and organizations attending the summit are exploring a partnership for data collection and dissemination. Dr. Gianinni and Gary Karp, SCILIFE Editor moderated the federal panels.

Also on Tuesday, Summit participants received a policy briefing from Ann Cody, Vice President of B&D Sagamore. Cody gave in depth preparation to the 200 constituents who then visited their Senators and Representatives on Wednesday afternoon.

Those participating in the work of the SCI Summit and the SCI Hall of Fame celebration offered rave reviews. SCI Summit 2005 exceeded most everyone's expectations and the cooperative work of creating systems change for people with SCI is well on its way.

NSCIA is grateful to the many corporations and organizations that sponsored the SCI Summit and SCI Hall of Fame.

Verbatim from the NSCIA website, spinalcord.org.