It’s true what they say, you can’t miss what you don’t know. There was
no more perfect example of this than my reluctance to open a facebook
account. In this day of social media saturation, I guess you could say I
was a dinosaur. I was perfectly content without a social media
presence. I was really quite reluctant to take the plunge, for many
reasons. I was newly divorced, and trying to maintain my privacy. My
girl’s autism somewhat curtailed my social life ( somewhat…..who am I
kidding ). But most of all, I just did not think I had that much to say, at
least nothing important. My feeling was that unless I had something
interesting to talk about, why bother.
Then, in the fall of 2018, right before my book was coming out, a friend
of mine persuaded me to take the plunge….”it’ll be great, you can do
some promotion for your book…go ahead, just do it.” So, I decided,
what the hell, let’s give it a try. So, I obtained the obligatory profile
photo, so lovely, and so dissimilar to me, unless you were squinting
your eyes ever so slightly…. with your head turned to a forty-five degree
angle, in the dark. With those conditions in place…. you could clearly
see that the person on my profile page…. was definitely a distant relative
of mine, once or twice removed, on the more attractive side of the
family. Not kidding.
So now for content. I had the loveliest photos of the girls, many of
which when they were much younger. Of course, I posted about my
book, some interesting quotes and articles on autism, and generally my
thoughts on current events, with an emphasis on special needs topics. It
also gave me an opportunity to spew sarcasm whenever I wanted. Yes,
I truly felt that I had established a profile that was representative of me,
and the girls, and was providing some good information and reasonable
opinions and observations, with the usual side order of humor.
Definitely worth the space it took up.
And certainly, I was able to follow influencers in the area of Autism, and
other topics that interested me. Many of my friends were quite
accomplished in the field of Special Education, and I was often in awe
of them, and the content they provided. I can honestly say that I learned
from my Facebook feed. Going into this, I was not sure I would be able
to say that I am so glad I was wrong.
But, as time passed, I was afraid that my fear was coming true, I was
feeling as if I had nothing to offer. I am not a fan of repeating myself (if
you ask my ex husband, he may disagree). I noticed that some of the
influencers I was following, would basically say the same thing, just
regurgitated, simply to have a post that day.
And because much of my feed was regarding special need issues,
something else became concerning to me. Ok, some of you should
prepare to be offended now……so let’s have at it…shall we.
Special needs individuals are entitled to privacy, even if they cannot
verbally express that, it should just be assumed. It can be easy to
mistake your special needs loved one as your property, to make
decisions for them and use their likeness as you wish. I want to
caution these dedicated and loving caregivers, who work tirelessly on
their behalf, that they cannot breach that privacy, even if it is being done
with the best of intentions.
Let me explain. Speaking as the parent of twin daughters, both of
who are high need individuals, I was always careful of posting, even
something as harmless as their images, because they were unable to
consent. I actually went so far as to write an entire book about them,
published under a nom de plume, changing their names through the
book, and not showing their images.
Now, a photo of a smiling individual is lovely, and even if actual
consent cannot be given, noone has been harmed. In fact our special
needs kiddos, with their smiling faces, always brightens my day. And
certainly if a individual can consent, have at it. But when a individual
cannot consent, which is usually a high need, or non verbal person, my
feeling is that great care should be taken. If your loved one is
struggeling, that struggle should not be broadcasted on social media,
even if the intent is to heighten awareness. I believe there are more
appropriate ways to get that done.
Of late, I have observed an alarming trend, mainly on TikTok. Full
disclosure, I enjoy that platform, it can be quite carefree and topical, and
I do enjoy the dancing videos. It is also a great reminder of how old,
boring and uncoordinated I am. Recently, I have been noticing many
videos of individuals, with different challenges, Autism, Down’s
Syndrome, and other genetic conditions, many of which are quite
serious, and life altering, some even fatal. Videos of these individuals
are sandwiched between air fryer recipes, using way too much garlic
powder, and scantily clad millennials, proclaiming how they “understood the assignment”. Simply by nature of their presence on this platform,
the videos of these individuals take on a lookie- loo quality, that I
personally find quite offensive. Instead of elevating an issue, my opinion
is that the seriousness has automatically been diminished. Coming
from someone who is always trying to insert levity into any situation, this
leaves a bad taste in my mouth. Just because you have content,
doesn’t mean it has to be posted. Wow, that would look great on a
t-shirt. My personal opinion is that there is a special place in hell for
someone who will use their special needs loved one as a magnet for
followers and all coveted endorsement deals.
If I get to the point where I need to resort to sharing an egg salad
sandwich, just so that I can have the daily obligatory post, it’s time to
Besides, I much prefer tuna.
So, based on this, I have decided to take a little step back from social
media. A mental health break, if you will. Now, not to worry, if i find a
cure for my kid’s autism or hit the lotto….and certainly if Idris Elba
finally succumbs to the many love spells I have cast on him….you’ll be
sure to find it on my feed. But for now, stay well my fellow facebookers.
See ya when I see ya.