Knowledge is power


It is a truth universally acknowledged that one can never have enough knowledge! This week brought with it two days filled with learning opportunities for us OT 3 students. The first, was the opportunity to sit in on 4th year research project presentations, and the next was a programme dedicated to external speakers who spoke about topics of relevance for our psychosocial block. Often, we students drift off into a limbo of slow blinks and deep breaths during days such as these. Not this time around! Never have we been this far at the edge of our seats, sitting this straight and raising our hands this high (repeatedly). Success? Oh yes.
When reflecting on the external speakers, one thing jumps out at me: honesty. Whether it was the mother speaking about the reality of raising an autistic son, the autistic man recounting the hardships of school years, the mother of a Down’s syndrome teen reflecting on the struggles of wanting to be an advocate but having limited support to do so, or the addict in recovery who shocked us with brutal facts about the world. These were merely truths. Yet, somehow, even after working in healthcare for 3 years, it was our first time hearing a lot of these truths. We were granted an incredible opportunity to interact with people with these diagnoses without being in a position of power. We weren’t wearing scrubs and holding a clipboard, so these people didn’t have to be honest with us. These days, when encountering someone with a disability, I’m very rarely on the same level as they are. I’m working and offering a service therefore there’s a transaction taking place. What differed when we had the external speakers come along, was that we were being schooled. And it was great! These were people with a disability teaching us about disability, and who knew we had so much to learn!? Its eye-opening, spine-tingling, gut wrenching stuff.  

The speaker who was the highlight of the event for me, was a 19-year-old man with ASD. I’ve attended numerous ASD lectures and watched my fair share of The Good Doctor and Rain Man, but I’ve never actually met an adult with ASD before. Autism is very much unchartered territory for me, and in a professional capacity I’ve yet to work with someone on the spectrum. I know that I lack a significant amount of knowledge pertaining to the diagnosis. Therefore, listening in on his speech was extraordinarily insightful. The speaker presented himself so eloquently and with so much wit and charm, that no sooner had he begun speaking and we were all in hysterics, nodding away at his infinite wisdom. 100 stereotypes were shattered by having this speaker spend a short amount of time with us. We listened and we learned. His honest account of mistreatment by medical personnel and challenges throughout school were vital for us to hear. Too often as students, we are eager to get our session done and leave, but understanding the full extent of life with a disability and being able to assist through advocacy is really where the job should end. The speaker went on to share with us a list of “what not to do’s” based on his experience in therapy. I literally wrote them down.  One off the list that struck a chord was “don’t treat me like a vegetable”. My heart broke. How fortunate we’ve been to have had the right training, to have had ethics drilled into us so strongly from day one. How fortunate are we, that we never have to doubt the fact that we’ve never treated someone that way? The speaker’s closing note was to give thanks to us for working in this profession and he repeated how lucky he was to have had an amazing OT that impacted his life so positively. My heart broke again. There was not a dry eye in the room! With deadlines creeping up on us, and our holidays a distant memory… THAT was the kick in the butt that we needed. Go little OT. Go do some good in this word.

I felt obliged to do some further readings into ASD and Down’s Syndrome, since having these external speakers really drove home the reality that I don’t know nearly enough.
I found a video (here’s the link https://www.youtube.com/watch?v=JYXcCU7hQuQ ) that describes the journey of a women with ASD from childhood to adulthood that is really insightful from the family’s perspective.
And another, narrated by an adult with autism https://www.youtube.com/watch?v=z7J15fB_YrE which gives great insight into his way of viewing the world.

The presenter who spoke on her experiences on having a child with Down’s Syndrome mentioned a few things about prenatal testing that intrigued me. During her speech, I was shocked when she revealed that although she had had prenatal testing done, and it indicated that her baby did not have Down’s, she still gave birth to a Down’s baby. Having never given much thought to having a child before, let alone what my opinions are about raising a child with disabilities, I turned to the great wide Web to educate myself.  What I’ve found is that there are those who believe that by undergoing prenatal testing and giving parents the option to terminate pregnancies, one is placing a negative valuation of the foetus being tested as well as on the lives of people living with disabilities (Parens and Asch, 2000). Furthermore, to test for disabling traits in the foetus, and then to base selective termination decisions upon this information, is, according to Asch (2000), to allow the disabling trait to ‘trump’ all other (as yet unknown) characteristics of the foetus. The opposing belief is that providing expectant parents with information about the health of the foetus will enhance reproductive autonomy by enabling them to make informed and rational decisions (Lawson & Pierson, 2007). Objectively, I can understand both arguments but taking a personal stance is far more difficult to say. To me, knowledge is power. Yet, I also believe strongly in everything happening for a reason. Hopefully, I can continue to educate myself, and reflect on the experiences of other’s like the inspiring mothers we had the privilege of listening to, in order to make informed decisions when that time in my life comes.

Overall, the guest speakers’ presentations not only expanded our professional knowledge, they granted us knowledge to be applied in daily living and wise words to consider when making our own life choices. What resonated so strongly throughout the awe-inspiring morning, was that listening to people and learning from their experiences pours water on the growing seed that is our minds. We can never stop learning from those around us, from our clients, and from our peers. And most importantly, we don’t know nearly enough. The session emphasized that we need to be humble when interacting with clients. We’ve read a textbook. But they’ve walked the journey. We need to listen and learn. Always.

Until next week,
Kaylee

References:
Lawson, K. L., & Pierson, R. A. (2007). Maternal decisions regarding prenatal diagnosis: rational choices or sensible decisions?. Journal of obstetrics and gynaecology Canada, 29(3), 240-246.
Parens, E. & Asch, A. (Eds.), Prenatal Testing and Disability Rights, Georgetown University Press, Washington, D.C (2000)
WebMD, (2016). When autism grows up [Video File]. Available at https://www.youtube.com/watch?v=z7J15fB_YrE
SeattleChildrens, (2017). Parallel Paths: Our life with autism [Video File]. Available at https://www.youtube.com/watch?v=JYXcCU7hQuQ

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