Disclosure

KT
Kristen Tuosto

by Kristen Tuosto

February 06, 2018

I sat down to write this January blog post within the first hour of being asked to volunteer to write a blog back in the beginning of November. I didn’t start then because I knew what I was going to write, I didn’t, not really. I did it because I knew it was going to take me months to formulate, articulate, and edit a coherent piece of written work that people could read and understand.

I tossed around a few ideas, writing them down on note cards, but there was only one topic that I really wanted to write about. However, I was, and to be honest still am, scared to discuss this topic due to the stigma surrounding it: dyslexia. Dyslexia, according to the DSM-5, is “a pattern of learning difficulties characterized by problems with accurate or fluent word recognition, poor decoding, and poor spelling abilities” (p.67). It is also quite possibly the worst spelled word in the English language for individuals with dyslexia, and it’s a word in my twenty-some-odd years I have never spelt correctly on my first attempt. 

 

from see to spell .com

 

More specifically, I wanted to write about what it is like to be a PhD student with dyslexia, but by writing about that I would be disclosing something very personal I wasn’t sure I was ready to admit to the world. It isn’t because I am ashamed, on the contrary I see my dyslexia as extremely advantageous[1]. The stigma and misinformation surrounding dyslexia and the potential backlash - backlash I have experienced before - that could negatively impact my future career as a scientist was the reason for my hesitancy.

Disclosing one’s dyslexia is difficult to do even in a non-academic setting due to common misconceptions about people with dyslexia, such as them being unintelligent, lazy, and unable to read, which are not true. However, disclosing in an academic setting is terrifying as being in academia is generally synonymous with being intelligent, and unfortunately there are many academics that hold onto these misconceptions about dyslexics.

My own experience in disclosing to my advisor was an extremely difficult decision that I agonized over for months prior to starting my PhD program. I made numerous pros and cons lists and sought advice from fellow dyslexics as well as previous professors and mentors. Unfortunately, the responses did not encourage disclosure, with a former professor actually telling me that if I wanted to make it in paleoanthropology I had to “...keep that shit hidden.”

To get other opinions on disclosing, I searched the internet to see how others have written about being a PhD student with dyslexia, and I found one blog and a few message boards. Unfortunately, the author of the blog never disclosed their dyslexia to anyone in their department, not even their advisor[2]. Many of their posts spoke to their anxiety about people in her department finding out through her blog, and the possible backlash she could experience.

The message boards about graduate students disclosing their dyslexia were equally disheartening. They were filled with academic horror stories from both students that disclosed and those that did not disclose their dyslexia. I read stories of academic bullying by professors and peers, of advisors saying they don’t believe in dyslexia, or of advisors thinking that the disclosure of dyslexia was meant to be an excuse for poor work instead of the advisee trying to explain how their mind works. The worst stories were of advisors overtly dropping their dyslexic grad students after finding out, or indirectly pressuring them to drop out of their programs by no longer advising them.

While there were positive stories of disclosing, the negative ones appeared to be much more common. However, even from the positive stories, the overwhelming message I gleaned was either (1) don’t disclose if you don’t think your advisor would be understanding, or (2) disclose to your advisor with caution, but no one else.

However, after months of debating with myself, I decided I would disclose to my advisor, but only after I had “proved” I belonged in the program – a strategy many other dyslexic graduate students appear to adopt – which in my mind wouldn’t occur until my third year.

Thankfully, I have a penchant to sometimes do spur of the moment risky behavior and blurted out during my first meeting with my advisor as her advisee that I have dyslexia. The disclosure to my advisor was both the most stressful and relieving event of my first semester as a PhD student. I will admit, disclosing to my advisor felt like I was admitting to a major lie or a deception, like I was informing her she accepted me under false pretense. However, my advisor never acted or treated me like I deceived her or that I was less capable because of my dyslexia; in fact, she has been nothing but understanding.

It was this understanding and empathy from my advisor – as well as a small handful of professors and mentors in my department to whom I have disclosed – that provided me with courage to write this blog post, essentially disclosing to my department, peers, and future colleagues.

As I mentioned before, disclosing an atypical learning style is honestly an extremely difficult decision to make as it is a personal bit of information about one’s self that many people – both in and out of academia – just do not understand. However, I think it is critical for academics to be aware that dyslexics and other individuals with different learning abilities are among their ranks and are just as capable as their non-learning “disabled” peers, we just happen to work and learn differently.

Finally, I also think it is critical for students with dyslexia and other learning differences to know that disclosing one’s neurodiversity to their advisors doesn’t always end in an academic horror story. I hope my own disclosure story eases some anxiety for my fellow dyslexic graduate students – or students with a different learning ability – about their own decision to disclosure.

 

References

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing.

Additional reading on the possible advantages of dyslexic

Geiger, G., Cattaneo, C., Galli, R., Pozzoli, U., Lorusso, M. L., Facoetti, A., & Molteni, M. (2008). Wide and diffuse perceptual modes characterize dyslexics in vision and audition. Perception, 37(11), 1745-1764.

Geiger, G., & Lettvin, J. Y. (1987). Peripheral vision in persons with dyslexia. New England Journal of Medicine, 316(20), 1238-1243.

Schneps, M. H., Rose, L. T., & Fischer, K. W. (2007). Visual learning and the brain: Implications for dyslexia. Mind, Brain, and Education, 1(3), 128-139.

Von Karolyi, C., Winner, E., Gray, W., & Sherman, G. F. (2003). Dyslexia linked to talent: Global visual-spatial ability. Brain and language, 85(3), 427-431.

Additional information

Dyslexia Screener for Adults Questionnaire

Dyslexia Basics

Figure from  http://www.seetospell.com/


[1]The advantages I attribute to my dyslexia are purely anecdotal, but are generally the same advantages attributed and claimed by other dyslexics, such as big picture thinking, good spatial, interconnected, and pattern narrative reasoning, as well as the ability to reason well in rapidly changing situations. Whether or not these advantages truly exist, or are better developed in dyslexics, is a question in need of more focused empirical research.

[2] I have had some communication with the author of this blog and have consciously choose not to link to their blog as they have not disclosed to their department and I do not want my own blog post to indirectly out them. As I mentioned above, disclosing one’s dyslexia is a very personal decision and should only be disclosed by the individual.