The following is part 3 of a series of entries that, as a whole, comprise a paper titled “Tourette Syndrome: Coping With Difference” I wrote for a class I am taking at the University of Texas-San Antonio. Read part 1 here. Read part 2 here.
After scouring the many methods used for inquiry, my first method is qualitative and goes back to the interviews. Qualitative inquiry is defined by Denzin and Lincoln as a civic, participatory, collaborative project; a project that joins the researcher with the researched in an on-going moral dialogue (Gergen, 2002).
Through the interviews, I was able to stay connected to my resources as we worked together to complete this inquiry. The interviews were my primary source for each perspective. Martinello kick-started her research on carousel horses after finding people that were willing to share their knowledge.
I knew this was the only way to find out the information I was looking for, and I used bits of this methodology for all of my perspectives. I was drawn to the historical perspective after I met a gentleman in his 50s who had not received a Tourette diagnosis until his was in his late 30s. I wandered why it took so long for doctors to give his tics a name and how his life had been impacted by the lack of help.
The educational perspective comes from my talks with Jacob and our development of the “Embracing Difference” campaign that calls for the education of TS. The film, I Have Tourettes but Tourettes Doesn’t Have Me, showed a group of children who go misunderstood by their teachers and classmates. I wondered about inclusion and how Jacob would fare if his tics were so severe that his peers could not ignore them.
For the psychological perspective I had to seek out others who could relate to Jacob and those “inner” battles with tics. How do they cope and how will their stories help us find our own coping system?
I had high hopes that I’d have people with TS lining up at my door to tell me about TS and how they coped with a condition that can seem disabling from afar. For the first few weeks I knew exactly one person with TS: Jacob. I had no idea how to find others.
After falling short of my expectations, I searched the Internet. I posted what I needed on multiple sites and when no one replied within the first day, I almost gave up the topic. Then one person replied back. They weren’t lining up at my door, but this one person wanted to share her story. She asked me not to mention her name, per her mom’s wishes, but “Joe Smith’s” story began the building on the rocky foundation for my paper.
Then came Lorenzo, who wrote a very touching account of his life with TS. Karen S. shared her son’s story and for the first time, I had found someone who understood from a mother’s point of view. All in all, I had about a half dozen responses to my request for information though Joe, Lorenzo, and Karen gave me the greatest amount of knowledge through their experiences.
The second key qualitative method for my paper is observation and stemmed from my lack of knowledge about the other forms of TS. I can look at Jacob and see how he moves and hear the sounds that he makes while he twitches, but I know that his tics are not characteristic of every one with TS.
Just as that misconception that all people with TS curse radiates throughout society, I has misconceptions about the varying forms of TS. The form may seem to follow a more medical aspect but I think the form and intensity of TS greatly impacts the amount of coping skills required.
I chose to watch two different films for this methodology, Front of the Class and the HBO special I Have Tourettes but Tourettes Doesn’t Have Me. The idea wasn’t to break down every aspect of the form of TS for those individuals. I wanted to watch them move and then note their demeanor compared to the others within the films.
Through observation I am using the compare and contrast method. I have video-taped Jacob on many occasions in order to document his tics. Looking back over the years, his tics have definitely increased, but how are they compared other children’s tics?
When the doctor told us that Jacob’s tics were the worse she had ever seen, I first thought his tics were truly severe. After watching the videos and hearing the stories of others, it is clear that Jacob’s doctor has not dealt with many patients who have Tourette.