Visible vs. Invisible

Warning:  This is going to be a long, probably discombobulated post in which I word vomit a lot of thoughts I have on "visible" vs. "invisible" disabilities.

There's been a lot of talk 'round the disability community lately about "visible" vs. "invisible" disabilities.  From the way some people talk, you'd think you could take a big fat Sharpie marker and draw a thick black line separating those with "visible" disabilities from those with "invisible" disabilities.

The issue of "visible" vs. "invisible" disabilities is kind of like the issue of "high functioning" vs. "low functioning".  What label gets placed on you depends on who is doing the labeling and what situation you're in.

Take me.  Depending on the day, time, situation, and any combination of factors, I a) walk without aids at all, b) walk with forearm crutches or c) use a wheelchair or motorized scooter.  So does that mean I bounce back and forth throughout the day, going from visible to invisible and back to visible?  If I'm walking without aids, but no one sees me, does that still mean I'm "invisibly" disabled?  (And while we're on the topic of existential questions, if a tree falls in the forest and no one is around to hear it, does it make a sound?)

What about someone with epilepsy?  Most of the time, they may look perfectly "normal" and thus be "invisibly" disabled.  But when they're having a seizure, especially if it's a grand mal, that's sure as hell visible.  Or someone with mental health impairments and self harm issues?  Persimmon Blackbridge, in the documentary, Shameless:  The Art of Disability, sums this up as she rolls back her sleeves to expose webs of scars from years of self injury:

That's the thing about invisible disabilities - wear a long sleeve shirt, you're fine.

When Persimmon is wearing a long sleeved shirt, she's "invisibly" disabled, but as soon as the scars come out, that's not invisible anymore.  This phenomenon of "invisible" disabilities is such a fluid concept that it's impossible to pin down who, exactly, qualifies as "invisibly" disabled, just as it's impossible to pin down who, exactly, is disabled in the first place.

And even if there are people who can be neatly categorized into "visibly" and "invisibly" disabled, what does that accomplish, besides dividing the disability community even more than it's already divided?  Just because I use mobility aids doesn't mean you know anything about my disability or how it affects me.  And it doesn't mean you have a clue about how to accommodate me, either.  And it shouldn't.  You know what the best way to figure out how to accommodate me is?  Ask me.  You know what the best way to figure out how to accommodate someone who doesn't show any outward signs of disability is?  Ask them.  There's no difference in the way you should treat someone.

And neither group has it "easier", either.  I've experienced it from both sides, both with my physical disability (and it's resulting oddities in my body) and my mental health impairments.  If you're more "out there" and visibly disabled, you get outright pity and ableist comments.  If you're less visibly disabled, and need or choose to disclose your disability, you're accused of "faking it", or get similarly skeptical reactions, and you STILL get pity and ableist comments once people find out.  Society pushes and indoctrinates people to "normalize" themselves and invisibilize their disabilities as much as possible, and then when they've expended time and energy and emotions jamming themselves as much into that "normal" mold as much as they can, they're accused of being fakers and benefit scroungers.  It's not "better" to be one or the other, if such defined categories even exist.  It's a different experience - just like all experiences of disability are unique.  People with the same/similar impairments may relate to each other, and there is often a nice tribe-like feeling when you're with people who have the same impairment as you, but it's still a very individual experience.

In conclusion:  The categories of "visible" and "invisible" disabilities are murky, at best, and only serve to further divide a very diverse and divided community.  So let's all stop meebling about how hard it is to be visibly/invisibly disabled and how the other group has it so much easier, ok?  Because it sucks to be visibly disabled sometimes, and it sucks to be invisibly disabled sometimes.  And it can also be MIND-BLOWINGLY AWESOME to be visibly disabled, and it can also be mind-blowingly awesome to be invisibly disabled.  They are both equal parts suckishness and awesomeness, just like any disability.

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Sweet Is the Melody

"Sweet is the melody,

so hard to come by

It's so hard to make every note bend just right

You lay down the hours and leave not one trace

but a tune for the dancing is there in its place."

-Sweet is the Melody by Aselin Debison 

Hey hey, it's time for the October Disability Blog Carnival!  Considering it's snowing where I live, it doesn't feel much like fall, but nevertheless it is and Halloween is just a few days away!  I'm your friendly neighborhood spaz, here to host this lovely carnival with the theme of sweet is the melody!  Get swept up by the music.....

Ettina over at Abnormaldiversity presents us with what I like to call a written music video to the Dixie Chick's Not Ready to Make Nice.  Her writing is incredibly clear and descriptive and I could visualize the entire video in my head.  I hope that someday someone makes that video for her.

Sharon at After Gadget writes a poignent post on how one song - Don't Leave Me This Way by the Communards - helped her cope with the death of her beloved service dog, partner, and friend, Gadget.  I've never heard the song (probably because I'm a young'un!) but I can definitely see how the lyrics can connect with someone who has lost somebody important in their lives.

And Elizabeth at Screw Bronze writes about writing a happy song, about disability and ability clashing and coexisting, about not fititng into society's boxes.  As someone who is also disabled and gifted, as someone who doesn't fit neatly into disability stereotypes,  I can relate a lot to this.

Jen at SuicidalNoMore tells a beautiful story, of how a simple CD Discman brightened someone's day.  Personally, I could not live without my Ipod and it helps me immensely when I'm going through an anxiety/depression episode and don't want to talk to anyone.  Music gives me something to hold onto.

And what about me?  I fully intended to write a post for this carnival, since music is something extremely important to me.   I play music almost constantly - if I'm on my computer, I will have Itunes or Pandora or Spotify open.  I fully intended to write a post, and then everything came crashing down.

Let's back up a little.  Last year was the most horrible year of my life.   I went away to college for the first time and became absolutely, postively terrified.  I would cry for hours on end and as soon as I'd stop, it would be like someone flipped a switch and I'd start all over again.  I went on like this for months until I finally got help and was put on anti-depressants.  The medication finally made me feel like myself again, and although I still struggle with my anxiety and depression, for the most part, I'm a functional human being again.

Last year, when I was going through all of that, I put together a playlist of "Strong Songs".  Songs that reminded me of who I was and who I wanted to be.  Songs that reminded me that I was a strong, beautiful person, no matter what society and my own brain told me.  Songs that brought back happy memories, memories of being with the people I care most about.  The playlist grew and grew, and now it's up to 110 songs.  It's not over yet, either.  When I find a song that I feel belongs on the playlist, I'll add it.  And when I'm having a bad day, when I'm crying and crying and crying, I put on my strong playlist to encourage me to be strong and get through it.


This past week was probably the worst anxiety/depression episode I've had since I was put on medication.  I couldn't stop crying and I didn't even know why I was crying.  I was curled up in a ball just wishing the feeling of intense sadness would go away.  It's the reason why this carnival is slightly late going up, although now that I'm looking at the call for submissions, I must've anticipated this, since I didn't set the carnival date til the 1st of November.  My friend Dani, who has mental health issues of her own, introduced me to this great song by Diana Degarmo called Emotional.  When I was going through my episode, I had this song on repeat and was singing through my tears.  So my choice of theme was very appropriate, because music helped me through my mental health issues last week.

Here's the link to my strong playlist on Spotify, not all the songs are on there, regrettably, because of Itunes/Spotify compatibility issues, but you get most of them.  Feel free to take this playlist and make it your own! 

Even if you didn't participate in the carnival this month, leave your favorite song in the comments.  What song helps you get through the ups and downs of disability?  What song or album do you have on repeat at the moment?   I know I'm not the only one who knows the truth of that old saying, music soothes the savage beast.

"Sometimes I feel like crying
Laying down and dying
That's when I need you
Laughing's always easy, but sometimes I'm just scared you'll leave me
That's when I feel emotional."

-Emotional by Diana Degarmo

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Update on the blog carnival

I psoted this a few days ago but just realized I accidentally posted it on Palsy Snark instead - oopsies!  Um, so the blog carnival is obviously late going up.  I have been having a lot of issues with my mental health lately and just haven't had the spoons, but I will start compiling the carnival now and hopefully will have it up by the end of the week!  Thank you all for your patience!

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Little Things That Piss Me Off

To the girl who yanked her friend out of the way by her backpack straps when she saw me on my scooter heading in their direction.  To her friend who then looked at me and went "Oh my god, I'm so sorry!" like she had committed a horrendous crime:

I use a wheelchair.  It is a mobility aid.  It is not a monstrous machine barreling, out of control, towards you, intent on flattening you like a pancake.  It goes 4.5 miles per hour at it's fastest.  I have been using my scooter since I got it over three years ago and at school, I use it every day.  I know what I'm doing.  Usually I'm careful enough that I don't run over people.  But if I do, I will of course stop and apologize, and you will be okay.  You will not melt into a pile of green goo like the Wicked Witch of the West if I happen to run over your foot or bash into the back of your ankles.  I share the same sidewalk as you and should be afforded the same respect as any other student walking the paths on this campus, but that doesn't mean you need to go out of your way to scatter when you see me coming.  I am quite content staying behind people until there's enough space for me to move past, just like anyone on their feet would do.  How would you feel if you were coming down the sidewalk and people practically tripped over themselves trying to get out of your way?  It makes me feel like I repel people, like you're afraid to get too close to me.

To the girl who exclaimed "I want a key!" when she saw that I have a key for my mailbox.  To the same girl, who asked me if I had paid for it, and after I explained that I have a key because of my disability, let out a very disappointed "Daaaaaaaaaaamnn".  I wish I could give you CP for a day and have you try those combination lock mailboxes.  You don't know how much I struggled with my mailbox last year.  How I'd avoid checking my mail because I just knew that I wasn't going to be able to open it.  How I'd struggle with my mailbox for ten minutes before giving up and asking whoever was at the desk for help.  How embarrassed I felt when it was halfway through the semester and I still couldn't open my mailbox.  How I couldn't understand how everyone else just twirled their combination locks and their mailboxes magically opened.  How I watched the desk staff open my mailbox for me and attempted to do the same thing only to fail again.  How every day was Russian Roulette, a guessing game, thinking "Am I going to be able to open my mailbox today?" It may not seem like much, but having a key this semester for my mailbox has made my life on this campus infinitely easier.  A key isn't something I paid or scammed my way into getting.  If you want a key, you have to take the whole disability experience, the good, the bad, and the ugly.  Take the mailbox key, the handicapped parking, the computer in class.  But make sure you take with it the muscle spasms, the pain, the feeling that you are just the elephant in the room, in the way, and it would benefit everyone if you just left.  Take the extra time and the cool wheelchair, but take with it the inaccessible bathrooms and the falling on your face.  Take with it the stutter that sometimes makes it almost impossible to get thoughts out, and the people tripping over your legs because you can't keep them bent enough so that they're not in the aisle.  Take it.  Take it all.  I'd be glad to give it to you for a few days, if you give me your typical body for awhile.

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Why hello there, Blogger.

It has been a long time, hasn't it?  I've been busy cheating on Blogger with Tumblr, but never fear, I will always come back to Blogger when I have something of actual length to say.  Which, sad to say, hasn't been lately.  Such is the life of a college student.

ANYWAY.  I'm hosting the October Disability Blog Carnival!  Pieces of the June one are still languishing in my drafts folder, and I intend to actually put it up.....sometime.  But onto October!  My theme for the October DBC is sweet is the melody.  How does music help you get through the tough times related to disability?  What songs empower you?  What songs remind you of the disability experience?  As always, I welcome submissions off-theme as well.  Please have submissions to me by October 25th and I will try my hardest to have them up by the first of November!!  You can comment on this post with your link or email me at caraliebowitz@gmail.com.  You can even send them to me through Tumblr if you like, I don't care.  Happy blogging, everyone!

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Post

every discussion
every essay, every poem
every scrap and morsel of language
i search for her
the one who CAN
the one who rides her scooter feeling like a fraud
because she gets up and walks
the one who knows her crutches
could be tossed away
and for the most part,
she'd be okay
but just okay
the one who can pass
can do everything
who knows she'll
most likely never end up institutionalized
doesn't have to rely on anyone else
the one who gets struck down with deceiving labels like "mild"
who could so easily distance herself
if she wanted to
the one who hears ringing accusations in her ears
"you're a faker!"
"you're not really disabled!"
"oh you are, but not like them!
not like those poor broken people!"
and she's afraid that if she listens to them enough
she might start to believe them
i search for her
because in finding her, i will have found myself

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CP in a Jar

Inspired by A Jar of Autism.

What would it be like if I could scoop my CP up and put it in a jar like that little blue flame that Hermione jars in Harry Potter?  It would be a fairly high commodity, I would think.  After all, if you bought CP In A Jar, you would get all those “special” accommodations, like being able to type all your notes and being able to leave class five minutes early - a whole five minutes of NO CLASS!  Of course, that’s assuming that you would even be able to get those accommodations, after doctors and therapists and everyone and their mother have said that yes, you do actually NEED those accommodations, only then will they relinquish them.  And the doctors take forever to get back to you too, and none of them actually know anything about cerebral palsy, so you end up writing the entire letter yourself and having the doctor stick his/her signature on it.  And even after you get those coveted accommodations, after you’ve struggled and cried for so many years trying to get them, there will still be people who tell you you don’t need them.  Some of those people will be the very people who are supposed to help you.  Do me a favor and direct those people to me.  I’ll sell them CP in a Jar, so that they can know what it’s like.

And if you got CP in a Jar, then you could get one of those AWESOME wheelchairs (like a car!) and go, like, a million miles an hour (when in actuality it’s only 4.5 - I know, I’ve looked it up), and SIT ALL THE TIME.  And all those unfortunate people who don’t have CP in a Jar will say “I wish I could sit all the time!” That is, of course, assuming insurance will cover the cost of a wheelchair, assuming the powers that be think your wheelchair is “medically necessary”.  Never mind that the powers that be have never actually MET you and have absolutely no idea what YOUR life is like.

You’ll get your muscles surgically altered as a toddler (and become some sort of freaky superhero!).  And you can whine and moan and bitch about how awful your life is and you’ll get all the attention for being such a special snowflake.  You’ll fall on your face and everyone will rush to your aid like a knight in shining armor (or just step on you like floor pizza).  People will wipe away a tear proclaiming how inspirational and courageous you are when you’re just trying to buy your food like everyone else.  You might even get money, just for being your very special self and out of the goodness of the hearts of people who are so much more fortunate than you are.

But you have to be careful not to overdose on CP in a Jar.  Of course, you wouldn’t want to become one of those people.  Those people who have all those absurd needs.  Those people who are always taking away from the normal people, greedy gophers that they are.  They think they’re so entitled.  Why are we giving them all those special programs and benefits?  It’s not like they’re ever going to get a real job.  Maybe work at McDonalds, if they’re lucky.  God forbid, you ever became one of those drooling, gibbering idiots!  And what if you were *whisper* retarded??  That would be so awful.  The poor things, they must be so sad.  No, you wouldn’t want to be one of them.  But just a little bit, just a pinch of CP in a Jar, that would be nice.

*side effects may include intense muscle spasms, chronic pain, people assuming you’re drunk, and the feeling that you’re generally a broken, worthless human being, among others

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