An Interview with Jamie Freebury

Q: Tell me a little bit about yourself! Anything from who you are, how you like to spend your time, or something people would be surprised to know about you. 

A: my name is Jamie Freebury, 3 years ago I suffered a brain aneurysm, that paralyzed me and disrupted my ability to speak completely. While I may be able to regain some of that function over time, and I am constantly rehabbing myself with that intent, I’ve had to radically adapt.

When I was younger, I hated writing. writing by hand, but especially typing. This was due to the fact that I was born with mild CP, right hemi paresis, and could not do fine motor activities, like typing with my right hand, so I was a one handed typist. I was always a quick thinker and hasty and impatient by nature. and I was always good at forming thoughts verbally. As a result, when I would attempt to write my thoughts down, a massive disjunction would develop between my thinking and writing, and I deeply disliked the process.

I don’t know why therefore, I have taken to the process of writing with my eyes (when it works, I just sneezed, which is always a problem, resetting my position as it does). It may be that the time scale on which the two things happen thinking and writing, have become so separated that the process has become comfortable some how. more likely, it is simply an example of the absolute power of necessity.

It’s a transformative experience to have ALL of one’s thought be in writing. The process which is true for everyone whereby thoughts change once they have been put into writing, seems especially true in my situation. more and more, I have to write things down for the thought to properly come together. Additionally, I can observe myself getting both more intuitive and skillful at it. I find more and more that my thoughts have perhaps a thematic coherence across multiple emails to a given person, that I perhaps did not intend at the outset.

So, one of my main activities is writing. previously I was always ashamed to call myself a writer. no longer. I don’t have a choice, as I’ve been saying. I have a Substack at analysisbyparalysis.substack.com which I would be happy for an interested reader of this interview to check out.

Q: Can you tell me about the AAC system(s) you use now? How does AAC affect your day-to-day life?

A: I use the tobii dynavox 13 system, and have done so since graduating from the first necessary use of partner assisted scanning (going letter by letter through the alphabet, turning my head slightly right, when the correct letter is reached by a communication partner). I still use this method frequently because I often do not have tobii in front of me. 

Despite having used tobii for two years, I really haven’t been able to use everything the machine has to offer. this is largely due to the fact that I wasn’t really trained on the device in a from the ground up intuitive way. I only know what I know about using the functions, and my anxiety. I find it difficult to say whether that anxiety is an endemic personality flaw, or whether it is a result of my new situation anxiety about stepping to new territory and trying new pathways, has severely limited my maximization of tobii capacity. The fundamental means of navigating around the machine is intended to be an app called ” control”, however I have hardly learned to use app, instead becoming proficient at the suite of apps designed specifically for use with tobii. thus the range of things I can do is limited, due to limited use of the machine.

I have become skilled at using those apps I do. however, I’ve recently been able to say more to an old friend from grad school by email than I ever probably did in person! Also I have become a great user of youtube. I was always a fan but now I have really sought out the corners of it that make me happy. videos on philosophy, history, archeology… And basketball! And there is always writing.

I also have to look forward to time when I can really use the machine properly. I would like to begin studying languages via duo lingo or something perhaps babel. just because I can’t speak, I’m not prevented from developing knowledge! I would also like to take up chess. Anyway, that’s the system I use. I’m not happy with how I was taught to use it. and I am, in a lazy way, not happy it doesn’t run like a mac. but I’m pretty happy with it.

Q: What’s something that people around you can do that makes communication easier?

A: the answer clearly will depend on the method of communication somewhat – the main type of experience I think of may be less interesting to you, given your involvement in work with the world of assistive devices, but it’s partner assisted scanning that to mind, as it confronts the dynamics at play more immediately, and essentially. In that situation, without an assistive device to hand *, I am often upset or alarmed about something, however unnecessarily.

*note : all of this talk about “devices” puts me in mind of the Sufian Stevens song, “futile devices”, which is pretty ironic in this context. the repeated line being “words are futile devices”… Until you don’t have them that is!

Anyway, I always feel like the time spent spelling out a word is a safe, salvific, space that cannot be touched by my anxiety of the moment. instead, I am totally focused on laying out the road map, in letters, to get us out of situation. What I most value from a communication partner there is an ability to calmly, perhaps strangely, forget about the immediate problem, and instead to enter the puzzle solving aspect of the activity wholeheartedly and take pride in our ability to get the solution as a team.

With a device like tobii, it’s more about of course, being very patient and not stacking questions one on another. and perhaps, asking questions which can be answered simply or more in depth, giving me the choice.