It’s not a subject I have managed to accidentally
stumble upon anywhere. It makes people easily uncomfortable. It is something
that is often considered a rather embarrassing, avoidable, a subject to be
silenced to nonexistence. Which is exactly why I am always bantering about it.
About being disabled.
I have written about it a lot during the past
years, trying in my own way to give a small voice to a large subject. How being
disabled is not something that defines me nor anyone else, how it does not –
wonders of wonders – make my life miserable, but is only what it is, one aspect
among others in my life. I’m still me, I’m still a person, I still have the
same right to dream, to enjoy my life, to notice the little things, to smile,
to laugh, to live, that any other human being, even if I have a disability
parking permission.
(I know it makes me a terrible person, but it is
fun to make people confused by smiling them widely in my pretty lace dresses while
sitting in my wheelchair. I know, I know, I am a hopelessly bad, bad person.
I should learn to act my part and look miserable, preferably wear black instead
of dusty rose, and I should definitely forget those lace petticoats. But
I keep forgetting it. I have too much fun and am too busy to live my life to
remember it.)
But, instead of talking about disabilities in
general, there’s one angle of it I would like to rise up properly to spotlight
this time. It is a subject very rarely talked about. (In fact, so rare I
have never heard anyone talk about it, beside me that is.)
What it is to be a disabled crafter. Or what it is to be a disabled
crafter, to be precise.
I know. It’s a huge subject, and I can’t ever
reach the bottom of it, but I want to share some thoughts about it with you, so
you could as a relatively healthy, averagely normal person (who actually can define
what normality or average is, but you know) see the world from just a tiny bit different
angle, or you could as a disabled crafter either nod in agreement and harrumph
that finally someone brings it up – or of course, totally disagree from your
own experience. Your pick.
First of all, a disclaimer. You need to
remember that my disabilities are mine and mine alone. Others have different
kinds of issues, but this is me now, talking from my point of view. I have mobility
issues, limited amount of energy, and all kinds of cognitive problems, caused
by rare chronic illnesses and a brain injury, but I do not have any kind of problems
with creative functioning.
Nor with intelligent functioning, may I add. Somehow,
people tend to think that having had an accident and getting a brain injury or
just because they see me in a wheelchair means that I need to be spoken slowly,
clearly, and preferably in short, simple sentences. Of course, what they do not
know – and maybe if you just happened to stumble upon my blog, you don’t either
– that actually I once was someone defined as quite smart; an academic researcher
in Helsinki University and Academy of Finland. Although an accident did wipe
most of my memory off more efficiently than any baby wipe does the trick with
acrylic paint, I do still have some of that brain capacity left. I can handle
long sentences, if I (want to) concentrate hard.
In short, my limits are physical, but they do
not prevent me from crafting. Or being a human being, for that matter.
The subject of being a disabled crafter is wider
and higher than Mount Everest, so I decided it needs the proper, thorough
attention it deserves. So, in this blogpost I concentrate on what it is to be a
disabled crafter in social media. Next time it’s more comfy areas I
promise, like how I did find sometimes funny, sometimes unexpected, sometimes
simple, alternate ways to craft with disabilities and so on. But this is a
subject we need to tackle through first, because this is the reason for quite a
lot of smaller subjects you might call problems if you are a pessimist (or a
realist), or hiccups if you are used to these kinds of things and just shrug
them off and have those rose-tinted classes of yours nearby.
And I have to admit that actually, this is a
subject I have been hesitating to talk about, for reasons you will soon see. I
have been writing this blogpost for months, trying to find right words, as it
is not a light subject, easy, happy, comfortable. No. It’s a rather ugly one.
And the words social media and ugly, they are a word combination that is, well,
it’s not very nice or easy to be the one saying it aloud. You see, as in life
in general, the subject of disability in social media is a subject uncomfortable,
unwanted, avoided.
Although I have been a crafty, creative person
all my life sewing, cross stitching, crocheting, paper crafting, doing some
serious dolls house crafting, painting, tinkering, playing the violin and
piano, singing, writing, drawing, reading, testing and exploring all possible new
aspects of creativity all my life, I found mixed media art only a couple of
years ago. (About three, I think.) Which, I can tell you, have been a blessing,
to find my own creative voice, my own place in the world, after having had to
bury my academic career.
This new crafty world has brought me immense
joy. It has also brought me new, unexpected problems or issues to tackle.
Problems or issues that are something I rarely, if never, hear anyone talking
about but which should be talked on and on, until from sheer exhaustion, the
subject is emptied of any taboos.
The world of crafting is a beautiful one. The
social media’s crafting corner is full of supporting friends, shared dreams,
kindness. It’s a creative haven, a community I feel grateful to be part of, and
I have not once experienced anything but love, kindness and genuine support. But.
(There’s bound to be a but. I’d not be writing this otherwise.)
I know I am not the only person on planet Earth
who loves crafting and have restrictions, but it is a topic simply not spoken
of in social media. I understand that not everyone wants to share their private
struggles, that some people just want crafting to be their happy place, where
they can be an equal part of crafting community without anyone knowing the
real-life battles, and I understand and respect that.
Also, I know there are people like me, who
think of nothing of their disabilities and restrictions, as that is just what
normality looks like for them, simply a subject not worth mentioning. I, on the
other hand, specifically want to talk about it. (I think I might lack the
bashfulness button, someone forgot to install that on me in birth. If you find
one extra button wandering about, it’s probably mine. If you send it to me,
that’d be great; I could use it in one of my mixed media canvases and name it Wanted:
Shame.)
I do know that there are many people out there,
who would want to share their struggles and their victories, who would want to
ask for advice or yearn for peer support but are too intimidated to do so,
because any sign of real-life weakness isn’t something social media is very
good at handling. And I think if one corner of the world of social media, it is
the creativity corner that should be open to everyone. And by everyone, I mean
every single person, regardless their skills, restrictions, disabilities, hidden
or in-plain-sight anything. The only thing that should matter is their love,
their passion to create.
But. Think about this… Every time – and I am serious – every single
time I mention the word DISABLED in my blog, in my Instagram post, in my
Facebook page, in my Facebook video, in my YouTube video, anywhere in social
media, every single time I lose followers.
Every single time I mention the word, I get
considerably less likes than otherwise. If I mention it in my videos, I get
thumps downs. Lots of them.
And believe me, I have tested it over and over
again. It. Is. True. I still am a researcher through and through, even
if these days a disability pensioner (sorry, just couldn’t resist), so I
tend to notice all kinds of unnecessary details.
To test the phenomenon more, started to use #disabledcrafter
on Instagram and my follower number dropped couple of hundreds. I mentioned the
word in one post and lost fifty followers more. And so on.
I mentioned in one video (on purpose, just to
test the reactions) that I need to use a bigger brush because it’s easier to hold
when you have mobility issues, and I got angry face emojis. I haven’t even
read any video comments lately, just because, well. I just don’t.
Luckily, I am not a person partial to follower
numbers or defining myself according to likes on social media. That’s not why I
am bringing this up, how many likes I get, how many followers I have, it simply
isn’t relevant for me. What is relevant is that there are people out there who
do care about these kinds of things. Which is why, when I noticed about this phenomenon,
I decided to repeat the word even more often. Just because I have a voice.
There are too many who haven’t.
I hasten to say that this phenomenon is not
something that is restricted to crafting world only. No, it’s just the way of
the social media, I know. I have a good example for you.
After suffering from my second brain hemorrhage
a couple of years ago, I lost my native language Finnish for a year or so and
spoke Finnish only with a strong Swedish-German-Russian dialect and with no
grammar whatsoever. I wrote about it in my personal, private Facebook I had for
people I called my friends, people I actually recognize when passing in
street, people who I would gladly ask in for coffee if I saw them. Instead of
getting supportive comments, I suddenly found I had almost 60 friends less. (That
is not much when you think in terms of general FB friends amount people tend to
have but at the time I had only approx. 120 friends to begin with, knowing them
all in real life, too.)
Just because I happened to have had a brain
hemorrhage and talked about it to my friends, they vanished. Now that
is social media for you. It just can’t handle real life with its darker shades,
it thrives only from the light bits.
But I also have a lot to be thankful for social
media, too. I have got friends, real, actual, lifetime friends dear to me. I
have a place I can feel loved, supported, appreciated just as I am, and I can
share my passion for creativity and beauty with them. I would be a lot lonelier
without my friends all over the world that social media have brought to me, and
it is those friends I will treasure like most valuable gift ever presented to me. I
have been able to take my first, tentative creative steps towards the yet invisible
trail while my friends have held my hand and shown me the way, and they have witnessed
and supported me while I have made the trail as my own and widened it to a
path. I could never have done it without them.
And what makes me most humble, grateful, and so
incredibly touched to tears is that I can proudly say I am part of Finnabair Creative
Team, team that supports, encourages, and urges me to talk about this subject
aloud, and not just aloud but with such a loud voice that others can hear it to
the far corners of the world. And that is one thing that I could not say nor
experience without social media. So, there really is is no such a thing as only
black and white. There is the whole rainbow of colours reflecting in
everything. The creativity corner of social media is
open to everyone, I know it is, I have experienced it myself, me being welcomed
with open arms. But, in the end of the day, it’s open only partially, as I have
myself witnessed, too, and that is something I’d love to see changing. I cannot
change social media, I’m only one person. But I can ask you to join me and make
the creativity corner equal and yes, accessible to everyone, together.
Think about it like this. What if most people
have actually been installed the bashfulness button in birth that I lack of and
are not as stubbornly Finn as I am? What if they actually do care what
others think? What if there are insecure, vulnerable individuals out there, who
do care how many followers or likes they have, and hence never ever can imagine
they could openly talk about their restrictions and problems they face with
crafting, in fear of experiencing the same phenomenon I am constantly crashing
with? Could it be possible that instead of pressing the unfollow button, we all
could share some collective support for anyone openly admitting they are
vulnerable?
You see, besides the aspect of social media and
its lack of being comfy with anything not-completely-over-the-moon-happy and
the collective intake of breath shaking its foundations with a mere mention of the
word “disability”, there are some things in real life that normal, relatively
healthy human beings cannot understand if they have not been through it all
themselves. And crafting with disabilities, my darling friend, is absolutely one
of those.
I want to shed some light to what it is to be a
disabled crafter not because I want sympathy. I do not. I and my disabilities
are fine, thank you, and can handle us pretty well, and I think that this might
be another reason it’s a subject never discussed. Any crafter with disabilities
does the same: concentrates on the good things (the actual crafting) instead of
wasting their time and energy to pointing out the problems and obstacles and
difficulties they face and conquer all the time when crafting.
I am a person not easily disheartened (I am a
Finn, after all, we invented the term sisu), so I took and still take it
all as a challenge to climb over. But what if there is someone out there, with
chronic illnesses and a flaming desire to create, who is discouraged by thinking
about all the obstacles they know they would face, just like they face in every
single thing they do, every single day of their one life?
I want to reach out for them, to hug them, to
courage them, to take their hand and say that hey, darling, beautiful, brave
you, don’t be afraid, you can do this, you can find a way, let me help you with
the first steps and soon you’ll soar.
