If I had a dollar bill for every time someone said something to me along the lines of, “you know, I’ve never thought of you as ‘disabled’, Meriah, you just seem so NORMAL!’, well, I wouldn’t have a mountain of money piled up to my chin, but I’m sure it’d reach my knees (- I’m tall).
And it’s like…. HUH ??
I seem so “normal”?! Are the disabled so un-normal, so oddly abnormal that we’re like the Coneheads or something? Am I then like the “v”, all posing to be the same but really need to eat rodents at a certain time of the day (isn’t that what the V did? What was it? It was something weird, wasn’t it?) Do I have to do something in particular that will qualify me as ‘not normal’ enough and then I’ll fit right in with the disabled camp? Or do I just need to not walk to look “disabled”? Maybe throw in a little drool?
I don’t think I need to get into those tired conversations of “what is normal anyway” or even on the word, “disabled”.
For what it’s worth, I think the word “disabled” is just flat-out stupid.
It used to really annoy me, the whole “dis-abled” , the implications of lack of able-ness, of broken-ness and all that, but then I struggled to come up with another word and couldn’t. And since the world is what it is right now, it’s useful to have a descriptive word for people like us, people that have something going on that makes functioning in a world that is built around a mainstream population that operates differently from us.
You know, a society that makes you telephone to solve problems, that is often inaccessible, that has rigid time frames, that insists that you be a certain way.
When you look at it that way – I am perfectly ‘normal’ – I’m not disabled – I’m just living in a society that is not made for me or others like me. I’m not yet living in a society that values what I’m bringing to the table.
But then, when I – or those like me – try to function in this society, we slam up against the wall of our ‘disability’. And it’s really not a question: yes, I am disabled in this here and now. Yes, my deafness, my TBI, narcolepsy, PTSD and auditory processing disorder do get in the way of functioning within these particular societal parameters. Yes, it is *really* fucking hard sometimes. REALLY fucking hard, you guys.
I’m still Meriah, though, you know? I still like Donna Summer, red saltwater sandals, bell-bottomed jeans, cheesy 80’s power ballads, the Kingston Trio, Haruki Murakami and Barbara Kingsolver novels, good graffiti, kimchi fried rice with bacon and crisp plums.
I’m disabled and I’m normal.
Or as normal as I’m ever going to be.
But I AM disabled.
And you know what else? I claim it. I’m proud of it.
I don’t want to “pass” anymore. I don’t want someone to think that telling me how “normal” I am – I sure don’t look disabled! – is some kind of compliment. Because it’s not.
By acknowledging my disability, I feel that my struggle is also acknowledged. By acknowledging my disability, I feel that my unique perspective and skills are given a nod. Saying that I don’t “seem disabled” is robbing me of my experience and it’s also telling me that you think people with disabilities are freaky and uncool or something.
And isn’t it about time we reframed our collective consciousness about disability? I mean, isn’t it time we remembered that some of the very coolest people ever to grace our planet were/are disabled? Hellllooooooooooooooooooooooooooo Albert Einstein, Frida Kahlo, Steve Jobs, Halle Barry, Cher, Franklin D. Roosevelt? Evelyn Glennie, Riva Lehrer, Harilyn Rousso, Simi Linton, Gavin Newsom (-yes!)? And, oh my God but it’s so easy to find disabled people in the arts! It’s almost like you throw a rock into a crowd at Hollywood or any given big-time art space and you are will land a few – because the disabled FLOCK to the arts; the arts are counted upon to be among the most welcoming spaces for us! So yeah, Tom Cruise, Catherine Zeta Jones – do they seem disabled?
And they are!
So I *do* think it’s time for a reframing.
– don’t you?
Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.
Really awesome! My relationship with disability is still pretty new and is relevant to me as a mother, but these ideas are ones that I wish more people could hear. One of my best friends used to constantly tell me that Cora didn’t look like she has Ds (even though she totally DOES look like it). It always bothered me, because what I heard was that NOT looking that way was preferable. Like her disability could never be normal, so she was denying it. But it is. And I love being able to recognize disability as normal. And the image of you throwing in a little drool made me giggle.
Hum. When people say to you “you don’t seem disabled”, I interpret that to mean “you don’t behave or do things any differently than someone without a disability, and I can’t tell that you struggle within these societal parameters as a result of it “. Since you identify so strongly with your disability and talk about it with such frequency, it seems natural (to me anyways) that people would have this reaction if you don’t outwardly or visibly express your disability in an overt way. So, yeah, you don’t drool and you don’t have a wheelchair. Your disability isn’t obvious, so people are surprised to learn about it. I can imagine that it would get tiring hearing this. People stereotype aspects of me all the time, and I find it tiring. But, it’s also an opportunity to do exactly what you want — reframe the conversation and get your message across.
Wonderful post. I totally agree with you.
About the only thing I can’t do is hear – that’s it – and when I apply for jobs, I do not fill out the “equal employment opportunity” questionnaire section of the application (in which one indicates their race, their gender, and whether or not they are disabled). I have always inclined to answer. Then when I am called in for an interview and I request an ASL interpreter – the HR department seems shocked and caught off guard. Hummm… so, they do take a peek at the “equal employment opportunity questionnaire” section of my application??? Whatever!
I like the idea of re-framing the word “disabled”. I notice that the non-disabled people have a negative aspect of people with disabilities. Oh, lucky us!
Word!
thanks for your comment
TYVM! Nailed it.
Those who have been around me for the better part of a decade have not noticed a disability, or that disability being progressive.
But they have talked among themselves that there is something “wrong” with me. I don’t sit on chairs, don’t grasp some abstracts, have a hard time using a pen or pencil and get frustrated at times …. no duh.
Great example – I was told that I couldn’t volunteer for an event after four years of volunteering because the event had grown prominent enough that they felt my sitting on the floor was “inappropriate.”
The irony (I live in Portland Oregon after all) is that a feature presenter for that event was a disabled man employed by MajorTechOrg as an advocate for disability at his company. The woman who told me I was “inappropriate” works at same said MajorTechOrg.
If I were in a chair, wheeled into MajorTech Org and the organizations sponsoring the event sponsoring, and told them about the decision, I would be heard. In fact, it never would have happened. As it is, I was “disappeared” from a chunk of my established social group, and no one blinked.
Remember – if you are someone with an attribute of some kind off the bell curve of our dominant paradigm 19th-century model of society and culture – non-white, alt-gen, visible/invisible dis – and someone else is bigoted about that, they are entitled only to a nice cup of shut the fuck up. They’re a bigot. Their opinion is rendered irrelevant.
Ugh. I hate to get all new-agey on you, but I felt like I could *FEEL* the energy coming out of that comment – like this torrent of anger mixed with frustration and sadness. And it’s such a crappy feeling, to feel so brushed over, dropped off because we don’t have what someone wants or accepts – in this case, a gorgeously visible disability. Then it becomes this question of what to do, right? I mean, *DOES* something need to be done? A letter written, a protest organized, something? But why are we always the ones who have to *DO* something anyway and it’s exhausting always *DOing* and shouldn’t they know us already and shouldn’t this just not be happening at all? [facepalm]
ps. “nice cup of shut the fuck up” -!!!!!! that needs to go down in my “best lines ever” book
pss.
xoxoxo