Question Time is a series in which we open up the floor to you, commenters. We invite you to share as you feel comfortable.
What are three words (or phrases) you would use to describe your experience of disability? It can be with regard to what goes on inside you, or responding to other people’s reactions, or whatever you like. (You can explain what each of the three things refers to if you want!)
35 thoughts on “Question Time: Three Words”
always feeling different
Mine are ‘difficult,’ ‘interesting’ and ‘varied’. Bit boring, sorry!
Would it be cheating if I had three phrases that each consisted of three words? I mean, you did say or. 😛
Ones I’m thinking of are “some assembly required”, “snap, crackle, pop” and “what hurts now?”
Stop stabbing me!
I actually said that in class once, I just could not get comfortable and it hurt and it kept going up and up and ow, and some people were a bit weirded out, but I got to explain it to them.
I later left that class because, as I told the professor, I couldn’t think.
I recently realized how important that phrase is – I’ve used it a zillion times with family and friends, but, according to my mom, I’ve never said “stabbing” to my doctor. Whoops.
(This is why I take her along – she may not speak for me, but she listens and makes sure an overworked doctor doesn’t assume something incorrectly and a girl who’s out of her head from pain, medication, or lack of sleep gets her point across. Advocates FTW! She also called the school last semester when I got the runaround trying to get my heater fixed (shut off) in my dorm room. Yeah, I’m a junior in college. But sometimes parents are necessary to get things moving. And to find out the “official” version – “We never told her to do that!” And this was after I told them that I was sick and had to lay down (“We have nowhere to put you.”), so I don’t feel guilty about unleashing wondermom on them.)
“This is real!”
I’d have to say “difficult,” “varied,” and “isolating.”
Difficult because, well — it’s hard sometimes to get by. To go about my life when it feels like my world is crashing down inside of me. To wonder how when my next panic attack or depressive episode will strike, and how it will affect my life.
Varied because it’s never stable. I’m not always functioning well mentally, but I’m not always in the depths of my own personal Inferno. This is good. The glimpses of clarity I get — sometimes lengthy, sometimes brief — give me hope.
Isolating because sometimes I feel very alone. Especially before my actual diagnosis, I felt extremely lonely in my disability. I often felt like the only one in the world (or at least, in the room) who thought like me, and who felt like I did, Now I know I’m not alone, but I still feel isolated when I’m not with my “safe people” who I feel comfortable talking to about my mental health. I may not be alone, but it sometimes feels like I’m the only one on my side.
“Not taken seriously.” This can be because I’m living with anxiety/depression or about having the illnesses themselves.
It’s funny how people use my mental health issues as justification to dismiss what I say, but then later tell me that those issues aren’t real. I wish they’d make up their mind already.
Lee – then they’d have to take your opinions and/or your illness seriously and that would be too hard. Or something.
Why would depression make someone take you less seriously? Um, just because I’m depressed doesn’t mean I can’t form opinions about things – I’m not thinking something different from you because of the depression, it’s because I disagree with you.
Is it because any “mental illness” or the fact that you sought help means you’re now “one of them” and “crazy” and thus unimportant.
Roller-Coaster, Frustrating, Hidden Benefits
Roller-Coaster because I have one of those great one day and crappy the next diseases. Never can plan, never know what’s going to happen next.
Frustrating because no one can SEE evidence of what I’m feeling, therefore I have to constantly decide whether to explain, advocate, or let it slide.
Hidden Benefits, because there are some, esp. as it pertains to parenting my two boys. Their childhoods were spent with me reading thousands of hours of books when I couldn’t do much, because I can’t work (but wanted to), I’ve been a stay at home mom to them, because of my diseases, my husband has been forced to take on a lot of parenting from infancy, and therefore has a close relationship with the kids.
Great topic! I’ve recently been reading “Six Word Memoirs”, and am amazed how a person’s experience can be shared in 6, or in this case, 3 words.
Uterus of doom.
Lee’s comment “It’s funny how people use my mental health issues as justification to dismiss what I say, but then later tell me that those issues aren’t real. I wish they’d make up their mind already.” really struck home with me. I was sitting in a meeting not too long ago where a person first totally underplayed the impact my health has on my life and expected me to do the same and then decided when my health has impacted my life. This person was very wrong. Incredibly frustrating.
My three would be hidden, pervasive, and permanent. Many of the things my disabilities, most of which appeared or evolved in the last 8 years, affect are now permanent, are pervasive throughout my life, and no one else sees them.
Three descriptive phrases/words I would use to describe my experience of disability are “recurring stagnation,” “internal dissonance,” and “invisibility.” I think that “recurring stagnation” conveys how improvements in my mental illness are always followed by frustrating steps backward that are seemingly out of my control. “Internal dissonance” accurately describes how my disability creates a sort of fragmented selfhood, and “invisibility” construes the silence, the shame, and the denial associated with my difference, as well as the outside structural forces that discourage of my own self-celebration and acceptance.
“I am depression.”
People get shocked and angry when I say that, because I’m supposed to see the depression as “other” than me — as an invader in my brain that is somehow choking out the “real me.” As something I have to “be strong about” and “fight” all the damn time (as if my life had no other purpose!), and as something I’m supposed to hate and feel like a broken person about.
It really pisses me off. Because I’ve heard all that before about other aspects of my life. It’s bullshit.
I can’t explain who I am or what my life has been like without taking into account that I’m cisgender female, brown-haired, right handed, Catholic and bisexual. Nor can I explain myself or my life without disability.
Hence “I am depression” and “depression is me.”
Stigma, discrimination, and misunderstanding.
Stop fearing me.
FFS, people, autism & epilepsy aren’t contagious, they aren’t the end of the world, the access I ask for isn’t hurting anyone, & your kids thought I was pretty kickin rad BEFORE you read my bracelet. nothing has changed except you stuck a label on my forehead, & see nothing but that now.
I’m. Not. Faking.
I can think of a few.
“I’m right here.”
“I like life.”
“Stop obstructing me.”
“Everyone needs assistance.”
“You’re the problem.”
“Community, connection, opportunity”
2. Missing something vital.
3. Sorry, please repeat.
“Normal” shifts daily.
Inconvenient. Burdensome. Parasitic.
How my relatives seem to see me. I should be wealthier. Self-sufficient. Not asking them for help with things like rent and health insurance. Because I’m all smart and shit. And they’re resentful. I really wish I was exaggerating.
.-= kaninchenzero´s last blog ..Out of Focus =-.
(What happens in my face periodically.)
(How I perceive most things without effort put in.)
Where’s my body?
(The disconnect that seems related to my movement disorder. I can lose my body quite easily and not be able to find the parts to move.)
1. Touched by fire (I heard someone describe people with bipolar disorder as this – it resonates with me really well).
“This is real,” I suppose. I had to think about it for a while in order to sum things up in just three words!
Always been invisible.
Forever, because I will always be bipolar II. It’s amazing how some people don’t grasp this simple concept, and think that someday I will be all better. No. Bzzzt. Wrong. Thanks for playing.
Fragmenting, because it’s broken my life up, and will continue to do so. Now I live in pieces between bad periods, and it’s very hard to think of doing anything that will span more than one of those. It’s hard to plan or trust myself, or get things done, because I know I will just be slapped down again. it’s very frustrating.
MINE, because it is mine. Nobody else can define this for me. They are not allowed to tell me it’s scary and wrong and evil and that I’m not capable of reasoning for myself. They are not allowed to tell me it’s a gift and wonderful and special, and that I can do anything I want if I “really try,” either. I don’t want to hear any of those things. They all completely miss my reality. Shut up and listen is four words, but it would work well overall.
This was an interesting exercise. Thank you.
Does not compute.
unpredictable, invisible & incomprehensible.
1) Shut Up
2) Listen to Me
3) Accept my experience at face value
It’s back, again.
Interconnected, invisible, infuriating.
“wrestling the Balrog.”
In just three words:
“YOU DON’T UNDERSTAND.”
I so often find myself saying this to friends and family when they’re constantly asking me questions about why I do certain things the way I do or when I try to explain to them why I’m unable to do something on one day that I seemed perfectly capable of managing on another. I get really sick and tired of having to justify myself and when they’re accusing me of lacking motivation etc, sometimes all I can do is say those three words in exasperation. This irritates them no end. Of course they don’t like to hear it because it forces them to contemplate their own privilege, even if only for a second.
“The whole package”.
(Or something with “package” in it).
And “Just a minute”.
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