This past spring, I saw an announcement through
Asperger Adults of Greater Washington (AAGW) that Tiffany Cheng of
Ithaca College wanted to interview an Aspie for her Disease and Lifestyle course. I responded, and she introduced me to her research partner Hannah Wiberg. I told them that I would be happy to participate as long as I received a copy of the final project, and they agreed to proceed. Also, they subsequently explicitly repeated their promise to send me a copy when the work, including a class presentation, was completed.
On that basis, I answered many questions in substantial detail, including some notes from my personal life. When the semester was over, I asked Ms. Cheng and Ms. Wiberg for a copy. Only then did they tell me that there was no written document and hence nothing they could copy for me. In fact, they had been specifically instructed not to even include any words in their PowerPoint slides. In short, they lied to me, implicitly and explicitly, to get my cooperation.
I have discussed Ms. Cheng's and Ms. Wiberg's conduct with their professor, associate department chair, department chair, IC's human subjects research review board chair and IC's vice president for student affairs. (I had to begin by tracking down their professor; apparently IC policy was also violated when Ms. Cheng and Ms. Wiberg did not provide that information from the beginning. They also did not honor my request for same.) I do not know what, if any, sanctions have been or may be levied against them.
I have also warned the good folks back at AAGW about this problem. To be sure, assisting with research can be a good thing. It can help others understand us better, and it can help us understand better how we're perceived. I for one will continue participating. We just need to keep in mind that not everyone is honest, in this or any other field.
What do you think?
Comments (1)
WOW! I would be mad. However, I would have insisted upon being allowed to be present for the presentation as well as requesting the "hard copies." If I'm going to be someone's guinea pig, I want to know what they are saying about me. If it was not possible, due to distance or scheduling conflicts for me to be present, I would have asked for a video of the presentation.
It seems to me that they had something to hide in keeping you "out of the loop." :( Not good. I'd be mad. Really mad.