Today NMD United addressed the following letter to administrators at the Muscular Dystrophy Association regarding an inaccessible event they hosted and organized today in Boston. Please read below:
May 22, 2016
Dear Ms. Malfitano:
This is a letter of concern and complaint regarding the inaccessible May 22, 2016 MDA Muscle Walk in Boston on behalf of members of NMD United, a peer led and driven, non-profit, association, which serves adults with neuromuscular disabilities around the world. Our members are astounded and infuriated by the blatant disregard of the accommodations, so readily needed by individuals with neuromuscular disabilities, by your organization. We viewed pictures from your event highlighting a lack of curb cut access, stair access to the speaker’s stage and after party, children being carried in their wheelchairs up a flight of stairs (dangerous), and no signage indicating accessibility.
Holding a MDA event at an inaccessible location is completely unacceptable and reinforces the view that your organization does not fully comprehend the needs of the population it claims to serve. Furthermore, such event planning and execution only reinforces the marginalized status of the disabled community at large. It is important to note that any public event legally mandates access under the Americans with Disabilities Act and your organizers evidently ignored this fact.
For decades, MDA has been using pity and maudlin images to raise money via the former telethon and, while the telethon may have ended, this inaccessible event and lack of consideration for those with disabilities in attendance signifies that this prior mindset is still alive and well. Would you organize an event for a women's organization in a location with no women’s restrooms, or an event for diabetes prevention at a candy store?
While MDA may have discontinued the telethon, this inaccessible Muscle Walk proves and continues to say a great deal about this organization and its mindset towards the community that you purport to represent. In our eyes, this event confirms that MDA sees people with neuromuscular conditions as nothing more than objects of charity, needing cures and unworthy of accommodations and full participation.
NMD United asks that MDA acknowledge this ironic insult to our community, publicly apologize, and institute policies and procedures on holding events that would prevent this from happening again. We also recommend that these policies mandate inviting adults with neuromuscular disabilities to the decision-making table when planning future events. Until this occurs, we will not attend or support future fundraising efforts.
Emily Wolinsky, President
T.K. Small, Vice President
Lorinda Gonzalez, Secretary
Jason Tweed, Board Member
Greg Smith, Board Member
Maria Sotnikova, Board Member
Jeff Hoffman, Board Member
And the following adults with neuromuscular disabilities who are proud members of NMD United:
Brandon Thornley, Liz Persaud, Emily Munson, Deborah Grayson Carpenter, Mike Volkman, Rachel Stewart, Michelle Wegner Harris, Steve Way, Carrie Ann Lucas of Disabled Parents Rights, Laura Halvorson, Iddy Garcia, Michelle Szumski, Crystal Evans-Pradhan, Dawn Alford, Alana Theriault, Jeff Parker, Lydia Nunez Landry, Annah Mobus, Natalie Lomske, Greg Buse, Natalie Evans of Englandshire, Jake Scholl, Nikki Bishop, Heather Kerstetter, Jill Crawford Hurt, Dan Tomkiewicz, Samantha Lorey, Ali Ramos, Rachel Markley, Justin Mahan, John Stucki, Carole Zoom, Crystal Marie Garcia, Christina Di Labio Hamilton, Carrie Ann Lawlor, Jade Theriault, Geri Skudney, Paige-Elizabeth Harris, Donna Kazee, Sherry Allen LeMeur, Kevin Baxter, Briana Mills, Samantha Moreno McGrath, Brian Bellows, Robert Martin Whatley, Damien Andre, Ke Aunna Wheeler, Kelley Belding, Nick Parker, Kareem Azzazi, Maggie Young-Hurtado, Jessica Maloney, Gaelen Duff, Kisha Lynnette Hillhouse, Meaghan Lyndaker, Tristan Archer, Kendra Scalia, Brandon Johnson, Olivia Dean, Stacy Zoern Goad, Melissa Milinovich, Cynthia Chen, JM Lawrence, Vanessa Mason, Tabitha Estrellado, Rev. Ellyn P. Kearney, Cory Lee, Terry Willoughby, Dana Carpenter, Chelsea Knutson, Katie Britton, Jonathan Marchand, Brooklyn Marx, Benjamin Kramich, Jensen Caraballo, Tyler Dykema, Julie M. Jones, Lauren Biancucci, Alice Wong, Lauren Oftedahl, Glenda Lee, Yulia Arakelyan, Danny Egan, Courtney Frazer, Rachel Klentz, Doris Standee, Joshua Thayer, Julie Duong, Grace Tsao, Lori Generes, Jen Onsum, Brittany Roberts, Denise Thomas-Reames, Jessica Elaine Blinkhorn, Megan Spano, Karen Foxgrover, Patricia Berne, Joey Weber, Steve Catalli, Kelly Cox, Salma Essaili, Kelly Cox, Henry Eichner, Nick Fryer, Michael Baranov, Daniel Nam, Geri Skudney, Donna Kazee, Sherry Allen LeMeur, and Briana Mills, Daniel Florio, Jessica Lehman of San Francisco Senior Disability Action, Becky Welch, Ingrid Tischer, Donna Burke of NY, Sara Michelle Gabel, and Robby Heisner*
*More signatures were added on Facebook after this letter was sent.