This week Maxine Derksen will tell how her studies in human-technology interaction led her on a path to learn about ataxia.
Hi everyone, or hallo allemaal! My name is Maxine Derksen and I’m a 26 years old student and birdwatcher from the Netherlands. I don’t have ataxia myself, nor do I have someone close to me that has it. So what am I doing on Faces of Ataxia, you might wonder? Let me start from the beginning (or at least, a beginning that’s of interest to you) to share how I learned about ataxia and what this rare condition has taught me.
I started off as a psychology student a few years ago. While I really enjoyed learning about the human mind, I was also intrigued by all kinds of technological developments going on. I wanted to learn more about how we can develop (assistive) technologies that match our norms and values and meet our expectations. Therefore, I decided to study human-technology interaction. But, as you might know, university research is often quite theoretical and abstract. While this is very interesting and can certainly be useful, the connection to society is sometimes hard to find.
For my thesis, I wanted to do a study on brain-computer interfaces (BCIs). A BCI is a relatively new technology, that is mainly being developed to be used as an assistive device for those who cannot rely on their speech or (fine) motor control. Instead, brain signals will be measured directly and used as input to control a computer, electrical wheelchair, or speech device.
In order to find a suitable and meaningful topic for my thesis, I tried to find people who had experience with BCIs. Then suddenly my attention got turned to a different direction: I met someone who told me about his daughter that has Friedreich’s Ataxia (FA). He shared his personal story, including the difficulty of getting the correct diagnosis and the impact that having FA has on his daughter and those caring for her. We also talked about BCIs and that it could be a meaningful device once his daughter would not be able to communicate independently anymore.
This was a turning point for my thesis since I actually landed on a problem coming from society. Therefore, I decided to focus on exploring if a BCI could be used as an assistive technology for people with ataxia. But of course, this meant that I had a lot to learn about a disease I have never heard about before and get in touch with people who have ataxia. This search led me to Hope for Ataxia. To my surprise, I was welcomed to join a support group meeting to get a better understanding of what it’s like to have ataxia. I was very impressed with the community that Mark and Courtney managed to create and the international spirit of the organization.
At the time of writing this, I am still finishing up my thesis. I never would have guessed that this would be such a valuable experience for me: learning about ataxia and hearing people’s personal stories which are so different for everyone. Of course, I will never fully understand what it’s like to live with ataxia, but I try to learn as much as I can. I hope that I can make a contribution in my own way by initiating research for assistive devices for people with ataxia and by helping out as a volunteer for Hope for Ataxia.
Thanks for sharing your story Maxine Derksen!
Please consider sharing your story – whether you have Ataxia, are a caregiver, friend, or relative. You may fill out the form below to get started.