Tag Archives: ableism

Triggers

Sorry I’ve been absent.  I have been/still am really triggered, and I haven’t been able to read–blogs or anything else longer than a few sentences.  Still really struggling and not sure I’ll be able to write coherently.

See, Thursday we went to Boston for a post-election party.  I thought it was just going to be the party, an overnight at someone’s place in Boston, and then home.  Instead it turned into bar-hopping with the campaign staff.  If you’re thinking that sounds like fun, you’re wrong.  See, alcohol is a trigger for me because my father was often drunk when he abused me.  Between the UC and the meds, I can’t drink.  Well, everybody else is getting fucking wasted, and they just leave me sitting in a corner by myself for hours, not even talking to me.  I told my RFD that I’m not physically capable of running all around Boston, and it was raining to boot.  Usually he’s really considerate about my limitations, but that night, he really didn’t seem to give a shit.  Maybe it was the alcohol, or maybe it was just that it was his last night with the rest of the campaign staff.  Whatever it was, he basically treated me like I didn’t matter–I got dragged to four different bars, and predictably, I eventually fell on a slick sidewalk at 1:30 in the morning and couldn’t get up for several minutes.  Oh, and for most of the time we were bar-hopping, our 20-year-old intern was just left sitting in his car because she couldn’t get into the bars.  I wanted to go sit with her instead, but my RFD made me stay because his phone was dead, and he needed my GPS to find our way back to where the car was parked.

In the second bar, while I was sitting alone in the corner, the only sober person, this drunk businessman in a nice suit comes over and starts hitting on me.  Then he grabbed my breast, and I just froze.  I just sat there and let him.  I have extensive martial arts experience, and even though I’m not physically capable of as much as I used to be, I could’ve gotten away from him.  If nothing else, I could’ve hit him with my cane.  But I didn’t do any of that.  I didn’t say no, I didn’t say stop.  I just sat there and let him do it.

Now I really hate myself.  It’s just like with my father.  I mean, okay, when I was a kid, there wasn’t really anything I could do about it.  Even as I got a little older, he had me believing that he’d kill me if I fought or if I told anyone, and I didn’t have the reasoning skills to realize he wouldn’t have gotten away with that–he’s really just not smart enough.  So back then, I had an excuse.  But I let it go on when I was old enough that I knew he wouldn’t kill me and I really could’ve stopped him.  I mean, I was 19 the last time he raped me.  There’s no excuse for that.  I just let him.  If I’d fought or said no, he probably would’ve stopped, but I never did.  So that’s on me.

Now I just want to tear myself to shreds.  I want to cut my breasts off–I never wanted them anyway, and if I did that, no one would want to touch me.  I’m also really struggling with sexual self-harm urges.  It’s something I used to do but haven’t in a long time.  But I can’t stop the flashbacks and the body memories, and it would put me back in control.  I know how fucked-up that is, but sometimes it’s the only thing that works.  If I do something worse that any of them ever did to me, then what they did can’t hurt me anymore.

And on top of everything else, my roommate is being horrible.  I came home to a gross apartment–mold in my microwave, a half-empty beer on the kitchen counter, an unflushed toilet, and sopping wet washcloths and a giant hairball in the bathtub.  I just pulled the washcloths and hairball out of the tub and dumped them on the bathroom floor, and this morning, she pitched a hissy fit over it, stomping around and slamming doors and shit.  (Another big trigger, on top of all the other triggers.)  I’m sorry, but you’re fucking 29 years old, and I’m not your goddamned maid.  I pay rent too.  I don’t mind messiness–books and papers and stuff sitting around is not a big deal, but I don’t want fucking mildew growing in my bathroom or mold growing in my kitchen.  In general, I don’t want things growing in my living space.  (Although right now growing some pot for myself sounds pretty ideal.)  How fucking hard is it to dump out the rest of your beer or to hang up your fucking washcloths?  But EVERY FUCKING DAY when I go to take a shower, there they are.  I don’t leave my shit for you to clean up, and you have the goddamn nerve to pitch a fit when I move your messes somewhere obvious as a reminder that maybe you should, you know, be a fucking adult and clean them the fuck up?  Bitch, get on the NOPE train to Fuckthatville.

My landlady is away for the weekend, but I’m thinking about talking to her about this when she gets back.  I’m hesitant to do that on the one hand, because I feel like we’re both adults and should handle our own problems.  But on the other hand, I’m so triggered by her screaming and slamming doors and stomping around that I literally CAN’T deal with it like an adult because I dissociate and switch, either to a terrified child or a really aggressive teenager (hence all the swearing in the last few paragraphs), neither of which is good for dealing with a tense situation.  Plus, if I do want to kick her out, I’m going to have to go through my landlady because Roommate is on the lease now.  I’m not even sure I legally CAN kick her out.  I just know I can’t deal with much more of this.  I’ve been taking photos of the grossness when it happens as documentation, but I’m not sure what the laws are.  I just know I can’t live like this.  I spend a lot of my time afraid to come out of my room when she’s home because I will snap if she starts yelling or bitching at me.  I just have so much other shit to deal with that I really cannot deal with hers on top of everything else.

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Come On, Cosmopolitan

A friend of mine posted a Cosmopolitan article on her Facebook page.  It’s about measures of health other than weight.weight loss/BMI.  On the surface, that sounds promising.  God knows I’d love to see an end to weight shaming and the rhetoric of fat=unhealthy/skinny=healthy.

But when I clicked through, I was sorely disappointed.  Cosmopolitan seems to have traded in weight-shaming for ableism.

To be fair, the article is titled “Signs You’re Healthy,” and I’m not exactly healthy.  But the article uses the word “healthy” as a moniker for “acceptable” and “good enough.”  It subtly shames people who aren’t doing the things listed, the implication being that we’re not trying hard enough to be healthy, which is apparently something we owe to society.  God forbid we should become useless, disabled burdens on society.

Let’s look at Cosmo’s signs of “health,” shall we?

1. You eat more whole foods than processed foods.
Is diet-shaming really that much different than weight-shaming, really?  It still promotes the idea that certain foods are good or bad, and since you are what you eat, you’re bad if you eat bad food.

My UC has severely limited my diet.  I can’t eat anything containing dairy, gluten, or corn in any form.  I have to severely limit my fiber intake.  This means very few fresh fruits and vegetables.  It means more processed grains, like white bread and pasta.  My disease also causes severe fatigue, so cooking is usually not something I’m capable of.  I basically live off of one brand of frozen meals that are free from all the foods that make me sick.  If I followed the diet generally recommended as healthy, I would be in a constant UC flare, which could literally become life-threatening to me.

I’m far from the only one for whom the stereotypical healthy diet advice doesn’t work.  Diet is highly individual, and you can’t reliably judge someone’s level of health by snooping through their grocery cart.  I already get intrusive comments from grocery store clerks and baggers, so I don’t need any more diet-shaming from Cosmopolitan.

4. You move your body and call it exercise.
At this point, when I move my body, I just hope it supports me.  When I move my body, I pray it won’t collapse in the middle of the grocery store.  I beg my shaking muscles to hold me up for just a little longer.  I wish my aching joints would stop grinding bone against bone when I move.  I hope that I can make it from the bed to the bathroom without losing consciousness.  I hope that I will not lose control of my bowels and crap my pants again.

Two years ago, before I got sick, I exercised vigorously.  I ran about three miles four or five days a week, I practiced martial arts three days a week, and I walked almost everywhere I went.  According to this, I was very healthy–and yet I still got life-threateningly ill.  My immune system turned against me, and I nearly died.  Now my illness has taken away my ability to exercise, but that’s not because I made unhealthy choices.

6. You have some sort of connection to your community.
Boy, that would be nice, wouldn’t it?  I used to.  I used to connect with people through my martial arts school and political volunteer work.  But when I lost the ability to stand and walk reliably, I lost all of that.  No one stuck around; our society doesn’t teach us how to relate to and support people who are sick with no hope of getting better, so instead people just disappear from our lives.  Illness and disability isolate us

8. You can physically accomplish the things that are important to you.
Well, I guess I should just give up now, then.  I can’t stand for more than a few minutes, even with a cane.  Most days even taking a shower is more than I can manage.  Cooking is out of the question.  My muscles give out and leave me collapsed on the floor when I’m trying to grocery shop.  I see my doctors more often than I see my friends.  I have to make compromises every day because, while there are many things that are important to me, I have the energy to accomplish very few of them.  It’s a good day if I can get through all the things I need to do to take care of my basic physical needs.  Anything beyond that is a bonus.

9. You can manage your day-to-day life — or feel like you have the kind of help you need to get by.
So if I can’t manage some aspects of day-to-day life and the help I need isn’t available to me, is that my fault?  That is not an unhealthy choice, Cosmo.  That’s the reality of circumstances.  Because I’m chronically ill and disabled, I’m poor: people with disabilities are three to four times more likely to live in poverty, and the programs in place to address poverty are woefully inadequate.  Most poverty programs don’t take into consideration the special needs of people with disabilities.  Other community programs don’t either: for example, my town has made the bus system mostly inaccessible to me because most stops don’t have benches for me to sit down while I wait, and they eliminated the stop near my house.  I’m not physically capable of walking the mile to the next stop.  There’s no service to provide rides to the grocery store or the doctor’s office.  There’s no service to have someone come in and cook meals for me so I have healthy food when I’m too sick to cook for myself.  Even therapy to help me deal with the depression and hopelessness that come from all of this is inaccessible to me.  That’s not my fault.  I’ve learned that I cannot demand my body do more than it’s capable of or I will get even sicker.  I cannot push my body beyond its limits to try to access services that won’t adequately meet my needs anyway.  Ultimately, Cosmo, that is a healthy choice, if not the most ideal one.

10. You can find a way to feel awesome about how you spend your days.
I try, I really do.  But let’s set aside all the inspiration porn about people with disabilities: being disabled is frustrating, isolating, and depressing.  Positive thinking has its place, but there are some things it’s impossible to reframe to make me feel awesome.  When I wake up and find myself and my bed covered in poop because once again, I’ve leaked during the night, that’s not awesome.  When I spend all day in the ER because I’m in severe pain and one of my five hundred doctors thinks I might have a bowel obstruction, that’s not awesome.  When the meds I have to take to keep myself alive make my bone marrow stop producing red and white blood cells, that’s not awesome.  When I collapse in a parking lot because my muscles have just stopped working, that’s not awesome.  When I try to make my life meaningful by doing volunteer work, but the people I work with give up on me and forget about me because accommodating my disability is too much of a hassle, that’s not awesome.  When poverty and inaccessible public transit leave me effectively housebound and isolated, that’s not awesome.

I would love to feel awesome about how I spend my days, but honestly, I spend most days in bed and in the bathroom.  Occasionally days are spent in doctors’ offices or the ER.  There are certain advantages to a life spent in bed: my bed is really comfy, and I’m an expert at cheat codes for The Sims 3.  I have connected with some amazing, supportive people through my blog, and I value that.  But mostly, the way I spend my days is boring and lonely and depressing.  Add to that that a lot of society is committed to rhetoric that characterizes me as a worthless drain on society.  Then consider that the government, in its failure to sufficiently fund anti-poverty programs, is basically telling me that I don’t deserve to be able to meet basic needs like shelter, food, heating, and medical care.  For disabled people, society’s message is that you either have to be an inspiring super-achiever (think Oscar Pistorius or Stephen Hawking), or you’re a totally useless burden on society.  It’s pretty impossible to feel awesome about myself and what I do all day when I’m inundated by those messages.

So here’s a radical idea: let’s stop teaching people that their value as humans depends on their health, or whatever markers of it society is currently obsessed with.  Let’s stop implying that people are only unhealthy because they choose to be and that bad health is a moral failure.  Instead, let’s teach ourselves that we don’t have to earn the right to exist.  Let’s teach each other that we’re already good enough.  Let’s create a society that includes people with disabilities instead of shutting us out of our communities.  Let’s change our perspectives so that we can see and value the contributions all of us make to the world.  Let’s start valuing people as they are, not as we want them (or ourselves) to be.

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We Don’t Need More Awareness

miawarenessweek

Apparently, it’s Mental Illness Awareness Week, and apparently, since I’m a crazy person, I’m supposed to care about it.  Well, I don’t.  I think it’s bullshit.

Lack of awareness is not the problem.  We all know mental illness exists.  I doubt you could find anyone in this country, in any developed nation, who doesn’t have a lived experience of mental illness or know someone who does.  Plastering banners on Facebook and wearing rubber wristbands and pointing out that 25% of us are bughouse nuts doesn’t actually help anyone.  We don’t need more awareness.

What we need is compassion.  We need people to stop treating us like we’re all axe murderers who will hack them into pieces at the slightest provocation.  We need people to stop being afraid to let us be around kids.  We need people to stop ignoring us because they don’t know what to say or how to make it better.  We need people to stop treating us like we’re intrinsically different from them.

We need to look at the epidemiology.  We need to look at the fact that people of color and poor people are more likely to be diagnosed with mental illness.  We need to look at the fact that trauma is probably the single biggest predictor of a psychiatric diagnosis.  We need to look at how being mentally ill puts us as much higher risk for being emotionally, physically, or sexually abused.

No, it’s not even that we need to look at those things–we have already established these as facts.  What we need to do is prioritize finding solutions to these problems.  Psychiatric treatment doesn’t address the underlying issues of poverty and racism that, in many cases, cause the emotional distress.  Most psychiatric treatment is still not trauma-informed; in fact, it is structured in a way that takes away all of the patient’s power and makes it even easier to abuse them.

We need more involvement in the system.  We need to remake the phrase “inmates running the asylum” into a good thing, into a working model for treatment of emotional distress.  We might not know exactly what we need in our moment of crisis, but people with lived experience know better than any guy with a white coat and a diploma on his wall.  We need professionals who will work with us, who will respect us as whole, competent people even when we don’t appear that way.  We need to hold the choice in our treatment and the power in our lives.  We need to stop being so afraid of violating boundaries that we leave people suffering all on their own.

We need a system where the patients hold as much power as the clinicians, or close to it.  It can be done; I’ve seen it work.  But it’s only available to rich people.  We need to find a way to make that available to everyone who needs it.  We need healthcare that doesn’t discriminate against people with emotional distress.  We need doctors who take our physical problems seriously instead of telling us it’s all in our heads.  We need to be listened to, heard, believed, included.

We need a system that doesn’t turn people away because they’re too sick or not sick enough.  We need a system in which the quality of care doesn’t depend on the amount you can pay for it.  We need a system that can offer people support beyond one hour of therapy a week if that’s what they need, but without threats and seclusion and removal of freedom.  We need a system that, instead of isolating us further, brings us into a community–first a community of other people experiencing emotional distress, and then into the larger community

But awareness?  No, we’ve got plenty of that.  All it does is reinforce the broken system that’s currently in place, so count me out.  I’ve got all the awareness I can stomach.  Instead, I’ll leave you with a poem.  To me it says everything I’m saying here except much more clearly, so here’s hoping you guys can understand it too.

Formaggio

The world
was whole because
it shattered. When it shattered,
then we knew what it was.

It never healed itself.
But in the deep fissures, smaller worlds appeared:
it was a good thing that human beings made them;
human beings know what they need,
better than any god.

On Huron Avenue they became
a block of stores: they became
Fishmonger, Formaggio. Whatever
they were or sold, they were
alike in their function: they were
visions of safety. Like
a resting place. The salespeople
were like parents; they appeared
to live there. On the whole,
kinder than parents.

Tributaries
feeding into a large river: I had
many lives. In the provisional world,
I stood where the fruits were,
flats of cherries, clementines,
under Hallie’s flowers.

I had many lives. Feeding
into a river, the river
feeding into a great ocean. If the self
becomes invisible has it disappeared?

I thrived. I lived
not completely alone, alone
but not completely, strangers
surging around me.

That’s what the sea is:
we exist in secret.

I had lives before this, stems
of a spray of flowers: they became
one thing, held by a ribbon at the center, a ribbon
visible under the hand. Above the hand,
the branching future, stems
ending in flowers. And the gripped fist–
that would be the self in the present.

–by Louise Gluck, from Vita Nova

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I Don’t Matter

I feel like an asshole every time I say I don’t matter.  People keep telling them I matter to them, and I don’t want to ignore that.

But it feels like it only matters if I matter to people who have the power and money to make my life survivable.  It feels like they’re the ultimate judges on whether I deserve to exist.  Clearly, their verdict is that I don’t, so it feels like it doesn’t matter that I matter to anyone else.

I hate myself for thinking that way, for being that person.  Because it means I’m essentially telling everyone else that they don’t matter.  Emotionally, that’s not how I feel at all, but that’s the logical conclusion to what I’m saying.  And I hate that because it makes me a collaborator.  I’m affirming a system that tells you that you don’t matter unless you have money or power.  Even though in my mind it only applies to me–everyone else in my situation absolutely deserves to exist and to have their needs met–I’m still buying into a fucked-up system.

But I don’t know how to believe I matter when I can’t make ends meet.  If someone matters to you, you take care of them.  You make sure they have a place to live and food to eat and warmth when it’s cold.  That’s how you treat someone that matters.  But my government, a system I’ve worked my ass off to improve, obviously doesn’t think I deserve those things.  Because I’m sick, because I’m disabled, because I’m poor, because I can’t contribute to the economy, I don’t matter.  They don’t come right out and say they want everybody like me to die, but what other conclusion can you draw when the government won’t give you enough help to meet even your most basic needs?  There’s a reason suicide rates are much higher among people living in poverty.  We’re stuck in an endless cycle of deprivation and need, and then we’re blamed for our own circumstances.  There’s no hope, never an end in sight.

So when people tell me I matter, I want to believe them, I really do.  But it seems impossible when I’m staring straight at evidence to the contrary.

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Trip Anxiety

I’m starting to get anxious about the trip.  I’m trying not to obsess over it, but it’s hard.

Mostly I’m stressing because B won’t be able to go with me.  When I thought about the trip, I’d planned it with him.  I’m afraid that without him, I’ll lapse back into the person I was seven years ago when I was last there instead of the person I am now.  He’s the only one who’s been around for that shift, and I’m afraid that being surrounded by people who haven’t really known me since then will drag me back.

The person I was when I left was miserable.  She hated herself and spent most of her time and energy trying to destroy herself.  She nearly killed herself so she wouldn’t have to feel anything but that self-hatred.  She couldn’t even consider that she might matter, that she might deserve to live and be safe and happy.  She was desperate for approval and love that only came if she was perfect, but she kept killing herself to try to win that love.  She was doing the best she could in that situation, but she was miserable.

Now, I’m so much better.  Yeah, I’m dealing with some pretty serious depression here lately, but not like it was before.  I don’t want to destroy myself anymore; I want to fix myself, even on the days that I don’t see any way of doing that.  When I imagined this trip, I imagined seeing all these relatives at the wedding.  Naturally, they’d ask what I’ve been up to.  I imagined telling my very Republican family, “Oh, I get Democrats elected.  My record is three for three, and I’m now working on getting a governor elected who defeated DOMA and defended buffer zones, and the first lesbian attorney general.  What have you been up to?”  (As I paraphrased it to my former therapist, “I work for the Democrats, so fuck all y’all.”)

Now, alone, I’m less certain I’ll be able to hang onto my present self.  I doubt I’ll slip all the way back into full-blown self-destruction, but it would be easy to start letting my family bully me and not stand up for myself.  That’s the pattern I’ve enacted with them my entire life, so it’s hard to pull the wheels out of those familiar ruts.

I’m worried people are going to be judgmental.  My bridesmaid dress is sleeveless, so a lot of my scars will be showing.  And I’m probably going to have to use my cane at the wedding, and I may even have to have a chair or something if I can’t stand up for long enough.  Certain family members have not been very understanding of my difficulties in the past.  One aunt called me up out of the blue about a year and a half after I moved to Massachusetts.  I hadn’t talked to her in 2 or 3 years, but she decided to call me and lecture me about how my problems were a choice and I was hurting the family.  And then there’s my grandfather, who I can easily imagine mocking me for needing to use the cane, or accusing me of faking it and being over-dramatic.

My youngest sister told me the other night that she’d already planned to run interference for me if people were being assholes.  I love that kid to death.  We also had a conversation about how I could just whack people across the shins with the cane to shut them up.  I mentioned wanting to find a way to electrify it so I could zap them if they were being assholes, but then I’m not sure the TSA would let me take it on the airplane.

And I don’t know what to expect when I go to Florida to help my mother.  Both my sisters say she’s a lot less crazy now that she’s remarried.  (Well, Middle Sister phrased it as “…now that she’s getting laid,” but you get the point.)  And most of the time I’m there, she’ll be at work, so I can knock out some chores and then go to the beach or kayak with the manatees.  So I think that should be manageable.

But I’m still afraid of losing myself when I go back to Birmingham.  I’m trying to calm myself down about it and convince myself that being aware of the potential for that problem will let me guard against it.  I’m trying not to let myself worry obsessively.  I’m trying to make plans to do fun stuff with people I like so I have an excuse not to spend much time with my extended family.  My sisters and I are getting matching tattoos, Little Sister and I are going to the zoo and the hands-on science museum where I used to work (possibly with Mother and Fake Stepdad, too), and Little Sister and I are going to hang out and smoke some pot.  (It’s medicinal!)  I’m going to get together with my best friend from high school, meet her daughter, cuddle with her kitties (she breeds and shows GORGEOUS Bengals), and do some yarn shopping.  I might get together with some other people, too.  So I have some good things going.  Hopefully it’ll make the trip okay.

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I Hate Conflict

I know that probably strikes people who know me casually as a weird statement.  I love to fight with people.  I work in politics, which is about as adversarial as you can get.  I’ve been sworn at and threatened more than a few times, and I just laugh it off.  I have a strong background in martial arts, even though I’m no longer physically able to practice.

What I can’t deal with is interpersonal conflict.  I hate upsetting people and/or feeling like they’re angry at me.

There was a situation on Facebook earlier today.  It’s been several hours, and my heart is still racing.  I can’t calm myself down.

I have these two friends.  Sam and I have known each other for probably twelve years, maybe longer.  She has a mental illness and MS that causes difficulties typing (among other things), so she often types in shorthand.  Holly is a friend from college who also struggles with mental illness, and she often comments on my posts about invisible illness, since mental illness is also invisible and people struggling with it are often discriminated against.  Sam and Holly don’t know each other, but I would’ve assumed they could relate on the basis of those shared experiences, although to be fair I don’t know if Holly is aware of Sam’s MS.  But Sam has talked about it in comments on my posts that Holly has also commented on, so I vaguely assumed she knew.

Sam commented on one of my posts (unrelated to any physical or mental illness), and her comment was in shorthand; e.g., “4” instead of “for,” no capitalization.  Several hours later, Holly commented in response, saying postmodern English should be classified as a new language.  I read it as kind of bitchy–it was unrelated to the post or Sam’s comment, and in my reading sounded like it was mocking Sam. 

I said, “Sam uses shorthand because she has a disability that often makes it difficult to type.”

Holly’s response: “Okay, but I had to read it three times to understand it.”

“At the risk of sounding like an asshole…if you don’t like it, no one’s forcing you to read it.”

At that point, Holly private messaged me and said I did come off sounding like an asshole.  Fair enough–I’m pretty talented at that.  I told her I couldn’t find a more diplomatic way of saying it that still conveyed the point, and I repeated that Sam physically cannot type well most of the time.  Holly said she’d been trying to be humorous, and I said I was sorry, I had misinterpreted the tone, which is easy to do in text.  She said something to the effect of, “I won’t make you put up with me anymore,” which felt kind of passive-aggressive, but I tried to cut her some slack because I know what it’s like to genuinely feel like people don’t want to have to put up with me.  I said I had overreacted and didn’t mean to sound like I liked Sam better than her.  She said she’d lay off commenting for a few days, and I said I understood and left it at that.

But now I’m feeling a whole mess of tangled emotions.  I’m still angry because I feel like once I pointed out to Holly that Sam types the way she does because of a disability, she should’ve apologized, or at least stopped arguing the point.  Her original comment felt snide and judgmental to me.  I can accept that it was an attempt at humor, but that doesn’t mean it’s not still judgmental.  There’s this sort of educated elitism I see happening, and I’m not exempt from it–I’ll admit that I judge some people based on their [lack of] grammar, particularly if they’re habitual offenders.  But I’m also aware that there are a number of disabilities that can cause it.  People with dyslexia can struggle a lot with spelling and grammar.  People with various physical disabilities like MS or rheumatoid arthritis can have difficulty with the physical act of typing.  Dictation programs used by visually impaired people often switch homonyms homophone like you’re/your and there/their/they’re.  Hell, even iPhone’s Siri can come up with some weird transliterations–at a political even, my RFD dictated a text saying “All of the parking lot,” but what Siri came up with was, “I love the parking lot,” which confused the hell out of the guy he was texting.  (We joked that we should adopt that as a social media hashtag for the two western/central Mass regions.)  So it made me angry that Holly, who struggles with her own experience of invisible illness, would continue to argue the point after I told her that Sam’s way of typing was due to an illness rather than willful ignorance.

But it’s very possible that I overreacted.  I can see how “If you don’t like it, no one’s making you read it” could be hurtful, even though that wasn’t my intent.  I feel guilty for hurting Holly’s feelings and making her feel like I don’t like her.

Then I feel frustrated because I feel like I can’t tell Holly what my thoughts/feelings were or what I was trying to communicate.  I saw that I’d hurt her, and I figured that trying to defend or even explain my point of view would seem defensive and make her feel more hurt.  But how do I express my feelings?  Where can I say that it felt like she was mocking my friend for bending grammar to accommodate her disability?  When do I get to say that even though she was trying to be funny, it didn’t come across that way, and I jumped in because I didn’t want Sam to be hurt by her comment?  How do I explain that I felt defensive because I’ve been judged and had snide comments made about my disability?

I don’t know how to balance it all.  I hurt Holly because I was trying to keep Sam from feeling hurt, and I set my own feelings aside because I wanted to make Holly feel heard and mitigate the hurt I caused her.  I knew that an argument with Holly probably wouldn’t get her to see my point because who can see clearly when they’re already hurt?  That’s not Holly’s fault.  But how do I meet my own emotional needs?  I want to feel like my point of view is heard too.  I want Holly not to make comments that might hurt Sam, or anyone else with a disability.  I want to stop feeling like a terrible person for hurting Holly.  I want to feel like I’m not being a crazy, fucked-up drama queen for feeling upset by the whole situation.  And I do not know how to do any of that.

So now I’m struggling with urges to self-harm and to binge and purge.  Partly to punish myself/ease my guilt, but mostly to deaden the storm of uncomfortable feelings.  I know they’re not actually intolerable, but it sure as hell feels that way right now.  I’m trying to breathe normally and slow down my racing heart, with very limited success.  I really, really hate this.

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When the Weirdos Come Out: Campaign Edition 1/?

Since I don’t seem to have anything of substance to say, have some funny campaign stories instead.

*

A few weeks ago, I was out canvassing for my gubernatorial candidate (MC) with a new intern I was training.  I think I’ve mentioned before that recently I’ve started using a cane because it’s hard for me to be on my feet for more than a few moment.  Mostly people are polite about it or don’t mention it at all.

But this particular voter interrupted my spiel.  “Hi, my name is Hope, this is J, and we’re with–“

“What’s wrong with you?”

He sounded curious, not hostile, but I was still taken aback.  “Pardon?”

He pointed at my cane.  “That.  What’s wrong with you?  Were you in the war?  Lose a leg?”

I’m wearing a knee-length skirt, so it’s pretty clear I have both legs.  I’m also not even sure which war he’s referring to.  “Uh…no.  I have an autoimmune disorder that sometimes makes it hard for me to walk.”

He then launched into a rambly story about his service in the war (from what I could gather, I think he meant Vietnam).  He started to tell us about one of his friends, and then he interrupted himself mid-sentence.  “Who are you?”

“My name is Hope, and this is J.  We’re with MC’s campaign for governor.”

“Oh.  What’s she running for?”

“Governor.”

“And she’s making you come out here in this hot sun when you can’t even walk?”

“No, sir, I volunteer my time, so I chose to come out here today and talk to voters about her message of fairness, equality, and opportunity.”  I was desperately trying to unsink a sinking ship.  “Can she count of your vote in the primary?”

“Well, who else is running?”

I gave him a brief run-down of her two challengers in the Democratic primary and mentioned the Republican and Independent candidates who are also running.

“I might vote for that…what’s his name?  Scott Brown.”

(For those of you not familiar with New England politics, Scott Brown is a Republican who beat my candidate for a US Senate seat in 2010 after Ed Kennedy died.  In 2012, Elizabeth Warren beat him, and Brown is now carpetbagging in New Hampshire but so far trailing Jeanne Shaheen in the polls.)

“He’s not running in Massachusetts this time.”

“He’s not?  Well, I’ll vote for the Democrats.  I always vote for the Democrats.  Been voting for ’em for 40 years.”

“That’s great.  So can MC count on your vote in the Democratic primary?”

“Tell you what, I’ll vote for her ’cause you’re out here in this hot sun with your walker.  But I might vote for Scott Brown in November.”

“All right, sir, well, thank you for you time.  Have a good afternoon!”

As we were walking away, my intern looked at me and asked, “So…is that normal?”

I had to reassure him that no, that was not a typical voter contact conversation, and that this far from the election, most voters are still going to be undecided, assuming they’re even home to open the door.

*

I’ve also been doing a farmers’ market table for my AG candidate (MH) on Saturday mornings.  My town is heavily Democratic, tends to be a younger age bracket because there are five colleges in the area, and is the lesbian capital of the country.  So overall, we tend to have mostly open-minded, respectful people.  But not all of them….

The first weirdo I got yesterday walked over to my table.

“Hi!  Would you like some information about MH?”

“Who’s that?”

Bear in mind, he’s walked over to my table that has four large “MH for Attorney General” signs taped to it, and I’m wearing two MH buttons and handing out palm cards.

“She’s a candidate for attorney general.”  I gave him a brief spiel about what she’s already accomplished working under our current AG (who also happens to be my gubernatorial candidate).  “Are there any particular issues you’re interested in this election?”

“What’s that thing in your nose?”

It’s allergy season, so my first thought was that I might have a huge booger, but all I can feel is my nose ring.  “What, my nose ring?  Just jewelry.”

“Does she know about that?” he asked sternly.

“Um…maybe?  She’s met me a number of times, but I don’t know for sure because she’s never commented on my jewelry.”  I tried to hand him a palm card.  “So can she count on your vote in the primary?”

“I’m from Connecticut.”  And then he just walked off.

*

The second weirdo came up to the table and pointed at the signs.  “Who’s that?”

“MH?  She’s running for attorney general.  Are you familiar with her at all?”

“No.”

I gave him the same spiel I give everybody–fought big banks, kept Massachusetts homeowners in their homes, defeated DOMA, advocated for people with disabilities, fought for women’s rights.

“Well, why do we need a woman?”

“Why not?” I said.  “A woman can do just as good a job.”

“No, they’re always too worried about their kids.”

“Well, MH doesn’t have any kids.”

“They make lousy lawyers, too.”

“Are you aware that our current attorney general is a woman?”

He looked at me like I was trying to pull something over on him.  “You sure?”

“Yes, sir.  Her name’s MC, and she’s been our attorney general for the last 7 years.  MH has been working under her.”

“But she’s quitting the job?”

“Right, she won’t be the attorney general after this year.”

“Good.  Shouldn’t have a woman in a man’s job.”

I grinned.  “She won’t be attorney general anymore because she’s running for governor, and she’s way ahead in all the polls.”

He went off grumbling something about “goddamn women.”

*

Mostly, though, the people I deal with are very nice and not like these people.  And these ones weren’t even mean, just…they make you shake your head as they walk away and mumble, “Ooooookay then” because, really, what else can you say?

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I’m just a person.

I mentioned in my last post that I had a conversation with my regional field director this weekend about disability issues in politics.  My RFD is a really nice guy, but the stuff he said made it really clear that he has little or no experience with disability.

He knows I identify as disabled, so he asked me what one issue could unite the entire disabled community.  I didn’t even know where to begin with that.  First of all, I’m not comfortable speaking for everyone with disabilities.  Disabled people are such a diverse demographic, and I can’t speak to everyone else’s experiences.  For instance, I don’t use a wheelchair, so I’m not very well acquainted with those sort of access issues.  I don’t know what it’s like for blind people to navigate the world.  I have significant hearing loss, but I haven’t experienced being Deaf.  I don’t want to try to speak for those people–partly because I’d probably get it wrong, but mostly because I want them to speak for themselves and be heard.

My RFD’s question lumps us all into this same demographic, but we’re not all that much alike.  I can’t think of just one issue that matters to everyone with disabilities.  We all have different thoughts, experiences, and needs.  I mean, it’s like asking for one issue that will unite all women–that just doesn’t exist.  The access issues that are most important to a Deaf person are likely to be different than the access issues that matter to someone with a psychiatric disability.  The needs of a blind person are probably different than the needs of someone with MS.

It felt like he wanted me to boil all of us down, all disabled people, into something slightly less than people.  I was trying to explain othering to him while he was doing it to me, and the frustrating thing is I didn’t even realize that was what was happening until hours later.  I knew the conversation made me feel uncomfortable, but I couldn’t pinpoint why while it was happening.

He also asked me if I would call all the disabled delegates.  (For the convention, to ensure diverse representation, there are slots reserved for add-on delegates [non-elected, although priority is given for those who ran but lost in their local caucuses] in three categories: youth, minority, and disabled; the people he wants me to call self-indentified as disabled by applying as disability add-ons.  I know there are also elected candidates who identify as disabled.)  I said that I would, and I’ve asked him to dig up for me any information he can on the candidate’s record on ADA compliance cases and so forth while she’s been the AG, as well as any statements or position papers on disability issues. 

But I feel kind of squirmy about making those calls, too.  It feels like I’m colluding, in a way–like I’m agreeing that I should be the one to talk to these delegates because I’m “like them.”  In reality, I may have little in common with these people beyond party affiliation and disability status.  See, all the disabled people I know care about plenty of things outside the realm of disability issues.  Am I really more qualified to talk to them just because I’m disabled too?  Wouldn’t anyone who had information at their disposal about the candidate’s record and stance on various disability issues be just as qualified as I am?

I keep thinking, you know, he wouldn’t ask me to call all the white delegates because I’m white and he’s not.  We do get Spanish speakers to call delegates who are more comfortable speaking Spanish, but that’s a communication issue.  My RFD’s never asked me if I’d talk to female delegates because I’m a female; he doesn’t assume I inherently know more about the candidate’s record on women’s issues just because I identify as female.  I wonder if he’s subconsciously uncomfortable addressing disabled people around disability issues.  I’m not saying he’s a bad person–I think it makes a lot of people nervous because they don’t want to offend or hurt anyone, and society doesn’t often teach us that disabled people are still just people.

I can’t even clearly communicate why the whole thing feels so wrong to me.  I also think I’m making my RFD sound like an ableist asshole, and he’s really not–I think he just doesn’t quite get it.

And I’m not sure how I want to handle the situation.  I don’t want to tell him I won’t call the delegates because that feels almost discriminatory to me–it might be better that I do it just because talking to disabled people doesn’t make me anxious like I suspect it does him.  I also don’t want to accuse him of othering–that tends to make people defensive and shut down conversations.  But I don’t know how to address it.  It’s not like we have a lot of heart-to-hearts; we’re mostly on the ground working with little time for in-depth conversations.

There’s also a part of me that just rolls my eyes and says, “Educating him is not my responsibility.”  I get tired of having to spread awareness and educate people.  I feel like a lot of resources–both time and money–go into public awareness campaigns.  I understand the aim, I do, but they feel so pointless most of the time.  Are they really making non-disabled people more comfortable interacting with disabled people?  A lot of times, it even feels like awareness campaigns contribute to othering us by saying, “Hey!  Look at these ways we’re different from you!” instead of, “Hey, you know, we’re basically just people who want the same basic stuff you want: love, respect, safety, community, stability, and lots of chocolate.”  I end up resenting all the awareness campaigns because it feels like we’re still spending our time, attention, and money focused on the non-disabled people.  Instead, why don’t we put the money into making buildings wheelchair accessible, providing ASL interpreters, providing adaptive technology, helping the many disabled people who live in poverty, creating job opportunities, and so forth?  Benefit US, not the people who are uncomfortable coexisting with us.

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Random Post Is Random

Randomness, bullet point edition.

–I got a slot as one of the disability add-on delegates to the state Democratic convention.  I’m pretty effing excited about that.  Full voting rights!

–They’re probably also going to make me a whip.  This probably sounds cooler and/or more sadomasochistic than it actually is.  Basically I’d just be responsible for a group of about 20-30 delegates.  Make sure they all get to roll call in the morning or they won’t be eligible to vote all day, and make sure they pay attention and vote when they’re called to vote.  But hey, I’d get to order people around.  I love authority when I’m the one wielding it (but pretty much no other time).

–My regional field director apparently think I represent all disabled people and wants me to do persuasion calls to all the disabled delegates.  This conversation was problematic on pretty much every imaginable level, and it will probably be its own post later on.

–I kind of want somebody to tell me I need to find a new therapist.  Of course, I’m not sure that would actually make me do anything about it–reference previous statement about only liking authority when I’m the one wielding it.  But I feel incapable of making a decision either for or against therapy, and I hate sitting on the fence.

–I think what I really want re: therapy is to not have to do the work of finding the therapist and then be a jerk to them for a while to get the aggression out of my system and make them win my trust.  Which makes me pretty much an asshole.

–I can’t remember if I mentioned that I finally got the results back from the biopsies they took during my colonoscopy.  Mild-moderate inflammation, which is a significant improvement.  Not remission, of course, since my body is a jerk, but definitely improvement from this time last year, which was when I was first getting really sick.  GI doc is trying to taper me off Entocort again.  I hope it works but remain skeptical–the last time we tried that, I ended up in the ER on morphine.

–I don’t know what the fuck my body is up to in general.  I’m having a LOT of muscle and joint pain, but only on the left side of my body.  I swear every joint on my left side hurts.  There’s the old lower back and SI joint pain, but my neck and shoulder have been hurting like hell for the last 6 or 8 weeks–I can’t even lift my arm all the way above my head right now without wanting to cry.  My knee and ankle hurt if I’m on my feet for more than about half an hour.  And the last two weeks, my wrist is hurting too.  At first I thought I’d just slept on it funny, but it hasn’t gone away.  It’s bad enough that I’ve started wearing my wrist brace again.  I’ve never heard of somebody having pain on just one side of their body.  I don’t know if it’s something medical I should be worried about or a trauma/PTSD/DID thing I need to deal with.  Either way, I’m not really dealing with it.  If I went to a medical doctor, they’d write it off as a case of the crazies because who only hurts on their left side?  But it’s not like I have a therapist to help me if it actually is psychosomatic.  So whatever.  I’m just in pain.

–I haven’t had any more panic attacks this weekend, but my baseline anxiety level has been higher than it’s been in a while.  It still bugs the hell out of me that I don’t know what I’m anxious about.  How am I supposed to deal with it when I don’t even know what it is?

–I feel like I should apologize for posting here so much, but I’m trying to resist that urge.  I feel really lonely and disconnected, and I think I’ve been posting a lot because I want to feel connected to someone, even if it’s just via the internet.  It’s hard not having the real-life support I used to have.

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Tonight I’m sad.

Tonight I read someone saying that when people are in the hospital for mental illness, their loved ones shouldn’t come visit every day or bring them things they like.  That would just encourage them to wind up in the hospital over and over again.

It makes me sad that that’s still such a prevalent view of people with a mental illness.

People like to say that there’s far less stigma against people with mental illnesses these days.  People say mental illnesses are just the same as physical issues, just as real and valid.  Ad campaigns tell us that people with mental illnesses are all around, that it’s not their fault their brains are broken.  But these same people turn around and treat us like we’re manipulative and attention-seeking, trying to coerce care and attention from the people closest to us..  I’m sure most people don’t do it out of malice, but it’s still hurtful and damaging to us.

I think people who’ve never been hospitalized on a psych unit don’t have a clear idea of what it’s like.  Most people know psychiatric treatment is no longer like One Flew Over the Cuckoo’s Nest, which is true.  They think it’s more like a vacation where we don’t have to go to work or clean or cook or worry about anything, which is untrue.

It’s not fun, and it’s not an escape from our everyday lives.  We don’t have maids and room service.  We’re medicated, fed, and kept alive–that’s about the extent of “treatment” at most places.  Most of the time, you just sit there.  Not on a beach or by a pool.  It’s usually a day room with fluorescent lights, grubby tiled floors, vinyl furniture (often bolted to the ground), and games and puzzles missing at least half of their pieces.  If you’re lucky, there might be a cheap romance novel or a cooking magazine from seven years ago.  You sit there, day after day, doing almost nothing.  Mostly, you’re ignored unless you’re trying to hurt yourself or someone else.  No one cares if you’re crying–they probably don’t even notice.  You’re treated as something less than a person.

I know many people who have been hospitalized for mental illness, including myself.  None of us liked it or wanted to go back.  We end up in hospitals because there’s nowhere else for us to turn, not because it gets us showered with love and attention.

Yes, I looked forward to visits when I was hospitalized.  It was usually the only real conversation I got in a day.  In a place where you’re treated as a bundle of symptoms or as a problem instead of as a person, you get desperate for human connections.  That’s certainly not exclusive to people with mental illnesses.

Yes, I looked forward to small treats when I was in the hospital.  For me, it was usually a Diet Coke.  I was in a foreign environment where I had no comforts and no control over my life.  Something as inconsequential as a bottle of Diet Coke reminded me that the real world was still out there and I wasn’t cut off from it forever.  When you can’t go outside, can’t open a window, can’t make a phone call, can’t do anything else to feel connected to that outside world, you need those little things that remind you that you still exist.  Isn’t connection to reality usually a treatment goal?

I wish that people would put themselves in the position of the person in their life who’s living with a mental illness.  Ask yourself what you would want if you were separated from your home, your family, your friends, and everything else in your daily life.  How would you feel?  How would you want people to treat you?  Would you want to be isolated and denied connection, or would you want the people you love to do what they can to stay connected?  Put yourself in our shoes.  There’s really no difference between us and you.

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September 22, 2013 · 3:29 am