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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