I have a passel of disabilities.
Longtime readers of this blog know that.
I am deaf!
I have PTSD!
...and don't forget the TBI
The sum total of it all in print – deaf, bi-polar, with TBI and PTSD, not to mention that I went through the windshield of a car when I was 4 and have scars (faded now, 40 years later) all over my face, and it sounds scary TO ME!
This is what I look like, a selfie I took a couple of weeks ago:
So, this is what a deaf lady looks like.
This is what someone (not as cool as Carrie Fisher) looks like, who has bi-polar disorder.
This is also what someone with TBI and PTSD can look like.
And hopefully in this you know that people with bi-polar disorder smile and don’t go whack-a-doo on you.
You know that deaf ladies can dig Mac makeup and Urban Decay and people with TBI and PTSD can quiver with the joy of anticipation when they look at their first cup of coffee of the day.
My point here is: I’ve got some scary-sounding disabilities, but I’m very aware that I look like a totally “normal” mom on the street.
I don’t have arrows pointing at me with neon blasts screaming, ‘SHE CAN’T HEAR YOU!!!”, I don’t have warning bells giving off alarms that I might lose my train of thought and look like I’m spacing out on you because of my TBI. I don’t have comic-magazine zings emitting from my hands with cool captions about how my bi-polar disorder kept me up ALL NIGHT thinking, zap!
I can pass as non-disabled
The most common reaction I get to talking about my disabilities in person is, “but you don’t seem disabled!” followed closely by, “I don’t think of you as disabled!”
But I am and I am and I am.
I don’t use a wheelchair but my disabilities can knock me down and leave me there. I am excluded from massive pieces of our culture by dint of a lack of access. I struggle and fight on a DAILY BASIS for things that are disability related.
And I still dig Urban Decay makeup and Mac makeup (and shop at Target and I don’t know what I’m going to do about Modcloth now). I am “normal” and I’m disabled. My point here is: disability is normal.
Disability is a completely normal and natural part of the human experience. There are elements that are very difficult about it – largely there we live in an inaccessible society – but there are elements that are infinitely beautiful and wonderful about it as well. I joke about how great it is to take off my hearing aids and enjoy total silence while still parenting 3 little kids, but man, that is REAL!
It’s NOT Just Me
I often get this vibe from others like, “oh well, Meriah, you are okay, but I don’t know about all those others out there with bi-polar disorder‘, just like I get plenty of, “Moxie’s sure cute, smart and seems capable but I don’t know about all those other people with Down syndrome…” and it’s like, ‘WE ARE NO DIFFERENT FROM ANYONE ELSE.”
You just know us, that’s all. You don’t know them; you know US.
So that’s really what it takes to normalize disability, isn’t it? Getting to know people with disabilities.
Shows like “Speechless” are crucial to this – and Born Like This, Glee, Switched at Birth (right? I haven’t seen it). Shows that allow you to connect with stories and lives that are lived with disabilities.
And imagery – seeing the normality of our lives. Seeing mundane stuff like our cup of coffee in the morning, seeing how someone who uses a respirator gets stoked about a Star Trek movie (like hopefully you without a disability do, too) , how someone who uses a wheelchair digs the frisky frolicsome awesomeness that fun clothes can be, gardening joy with OI and watching music concerts with spina bifida. None of us with disabilities are fundamentally any different from you without.
Enter 365 Days with Disability
It’s been an ongoing mission of mine to present the normalcy of disability.
Sheesh, that’s a big part of what this blog is all about! Sharing aspects of my own life and Moxie’s with you, showing you that despite stuff like living off the grid in a yurt (2 hours from a movie theatre, hospital or Safeway),we are really “normal.”
I want to show that disability is emphatically NOT something to be pitied, nor is it something to be scared of. It’s a natural part of the human experience, and we are critical to so much of the diversity in humanity.
Toward that end, I started up the Instagram-based #365dayswithdisability project – it’s showing our lives that are lived with disability through one gloriously mundane photo at a time.
and it's really awesome!
I’m going to wrap up this post, but I encourage you to tag your photos on Instagram #365dayswithdisability – be a part of this! Swing by, check out features and what others are tagging, because it’s COOL.
Here are a few: