We'll keep you informed of any developments after we sent the following email this morning telling CDRF that we were ending our campaign and that they should listen to paralyzed folks and their supporters all over the world and work on a cure, not a celebration, of paralysis.
My name is Dennis Tesolat, one of organisers of the recent email campaign regarding the "Benefits of Disability" blog which you hosted on your website. There was widespread outrage regarding this article, but instead trying to get your attention as individuals we decided that the message would be much clearer as a group. Often when we speak as individuals, our voices are shunted aside. This way you know that with a relatively small, low profile appeal, there are quite a few folks who don't like the article, and more than that, people would like the public face of CDRF to talk a little more about cure.
The publication of the blog on your website has caused outrage primarily because of the insulting context of the article, but also because it highlights a far more serious issue within CDRF; poor communication regarding cure related activities. CDRF is vocal in its support of care and quality of life initiatives but the message that comes out of CDRF regarding cure is often not as clear, or as loud. Surely equal space should be given to both care and cure initiatives ensure today’s care and tomorrow’s cure.
I hope that you understand the real value of your organization and the high impact of your foundation's name. CDRF has a real opportunity to be a leader in this field. However, statements in celebration of paralysis, the mainstay of current CDRF public announcements, discourage community support as these messages negate your very real focus on curing spinal cord injury. CDRF’s communication strategy regarding cure initiatives lacks structure and coherence, leading many to believe that cure is in fact not a CDRF priority. We question the impact that this poor communication strategy regarding cure has on the ethos of the whole organisation; is it really about finding tomorrow’s cure, or is it just about celebrating disability? The public messages you put out are not just advertising, but will also impact your organization's own internal focus.
I hope this letter can be accepted as an invitation to dialogue. We would be happy to talk with you about some of the issue that CDRF is currently facing regarding cure activities and related communication strategies. The email campaign regarding the article will be brought to a close. We hope it has enabled internal insight and analysis into the message that CDRF puts into the community. We hope our voices have been heard and we look forward to seeing improvements in the great work that CDRF does.