Time to Soar

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.