Category Archives: From the comments

Crowd Sourcing Counter-Arguments: You’re Easily Offended and People with Disabilities Can’t Act Anyway

Gentle Commenters & Readers of FWD:

I am tired. I am so completely and utterly out of spoons today I cannot even tell you. And thus, I turn to you, gentle folk, and ask for your assistance.

One of the more popular places to leave drive-by comments on FWD is And if this keeps up, there won’t be any, a post which is about the difficulties that performers with disabilities have in getting jobs, compared to the Oscar Bait that is non-disabled people playing the same role. At the time, I referred to it as “Crip Drag”, although having been gently corrected on that, I would now call it “Crip Face”.

The drive-by comments are usually all variations of the one that I have just approved there. I won’t copy the whole thing, but here is a small section of it:

So when your ultimate goal is to make a good film or play, and you’re taking into account physical characteristics, PR, talent, experience, chemistry (both in the role and with the other performers), and myriad other incidental considerations, and THEN you say you’re only going to choose from the very, very small pool of disabled actors, the end result is you’re going to get an actor far less suitable to the role than if you just chose for the good of the performance.

If you have the time/energy/inclination to do so, please join in the comments there to counter these arguments. I ask because I hope, sincerely, that if there is a discussion right there that takes on this oft-repeated belief that disabled people are just not able to act or perform in any way, or that what we are is “easily offended” rather than pointing out a problematic form of discrimination, maybe drive-by comments repeating it over and over will stop.

My only request in this is that commenters be polite. I know: tone shouldn’t matter. And I think anyone who isn’t willing to listen simply because You’re Too Angry is probably not anyone who is going to listen when you’re being polite. But, please do so, for me, because I’m tired, and angry is not something I can deal with today.

Again, here is the comment in full.

Your attention to this matter is greatly appreciated.

With affection,

I’d Rather Be Dead

I didn’t think I’d need to do this but it has come up: This post is not a place to discuss the merits of assisted suicide. Many disabled people, including me, find it really unsettling. In the context of able-bodied and neurotypical people telling us our lives aren’t worth living it is especially inappropriate. Comments on the subject will not be published.

Warning: The following includes graphic descriptions of medical unpleasantries.

I could never live like you. I’d rather be dead. You’re so strong. You’re so brave. How do you do it?

I have a chronic pain condition. Most of the time I don’t bother getting into detail because I don’t feel like it but it’s illustrative here, so I’ll share. I live in pain. It pools in my hips and my left knee and my right shoulder and sometimes my legs turn to stone. Every step I walk hurts and I keep getting slower and more labored. (My disability is invisible only in the most technical sense. Fortunately people have lots of practice not seeing disability! So, phew.) Sometimes, like the other night, my hands hurt so much I can’t get the non-child-resistant easy-open top off the bottle of pain meds.

(If my hands hurt so much why do I type? Why not use a voice writer? Because this voice here, this is the voice I write with. This is not the voice I speak with. I would write far less if I had to use my voice to do it. And it’s only pain.)

And then there’s the Weird Shit. (It’s a technical term.) I take antibiotics daily because if I don’t I get a urinary tract infection which leaves me crumpled in the bathtub screaming, gushing blood, graying out, waiting for the big antibiotics to get working. Sure I could go to the emergency room and I have — where they give me the same antibiotics I’d get from calling my urologist’s answering service and pain meds weaker than what I take daily. And I get to deal with having medical professionals react to me being trans* and poor.

A sore throat once turned out to be a fungal infection, another one was a tonsillary abscess, the treatment for which was getting stabbed with a large-bore needle then having the contents of the abcess squished out. It was about as comfortable as it sounds, and it tasted every bit as good. I did not bite the nurse practitioner who was treating me. My general practitioner later looked at me really weird when I expressed concern that my next sore throat (it was just a virus and a runny nose) might be one of these until I explained that I’d actually had these things.

The big one was when a cold — in the space of three weeks — became bronchitis, then pneumonia. If I rolled onto my right side, I felt like I was drowning. If I sat up, I felt dizzy. A chest x-ray showed much of my left lung was wrong. I was admitted to hospital that day, the five doctors that came that night took my wife into the hall and told her the things that could be killing me. There was fluid in the space around my lung. They poked at me and stuck a needle in and drew off three hundred millilitres. I didn’t get appreciably better. They installed a peripherally introduced central catheter so they could give me vein-killing antibiotics like vancomycin and aureomycin. The fluid they’d drawn off, cultured, proved to be sterile. More chest x-rays showed shadowy bits around my heart and more imaging showed fluid buildup there too — between having a lung and a third to breathe with and a heart working under the increased burden, I was understandably tired. Even more understandably when some time during the week I was in hospital, my red blood cell count fell through the floor. They were tracking everything that came out of me so it wasn’t like the blood was going anywhere, it just… vanished. They gave me more blood. Later they got the bright idea of drawing off the fluid around my lung at least and took me down to radiological medicine. I got to sit up for it. They did throw in some lidocaine, which at the time I hadn’t figured out that I could say “Hey I don’t metabolize this like most people I need more time for it to take effect before you start stabbing me with shit” so the ginormous fucking needle they stabbed me in the back with? I felt most of that. Ow. I wasn’t supposed to see it (mustn’t discomfit the patient, even if she finds things comforting that most people don’t), but I got a look at the three-litre vacuum bottle half full of murky green fluid they’d sucked out of me. I felt much better, though that lung felt crinkly like cellophane from having been collapsed so long. It was a teaching hospital, so the place was crawling with med students who all (I heard — the nurses wouldn’t actually let them come near my room for which I am still grateful) made excuses to come read my chart. I was medically interesting. I never did get a diagnosis. A real diagnosis, I mean. I know full well that ‘idiopathic pericarditis’ means ‘the membrane around your heart is inflamed and we don’t know why.’

On a fun side note, while I was in hospital busy being sick with Weird Shit I kept getting calls from work. I was the only person in the company who knew how to do what I did, so I provided user support. From my hospital bed. On morphine, with blood running into my arm. It was kind of impressive, in an appalling way. When I was home (I was out of work almost two months and none of it was remotely vacational — at some point I’ll write about having had a whole week of vacation in the ten years since my diagnosis with this chronic pain condition) they sent someone to bring me a computer so I could do some things, occasionally.

I’ll stop with the Ways Kaninchen Zero Is Very Very Ill now. The point is yeah, there’s a lot going on. Most of us could tell similar stories, or scarier ones.

I cry, often. Even with the meds I’m in a lot of pain all the time. I’m exhausted, all the time. I work thirty to forty hours a week in spite of it (though I’m running up against the limits of that too).

People who don’t live with chronic pain wonder how I do this. How do I live with this much pain? How do I keep going? How have I done this since I was a teenager? (I’m thirty-seven now.) I must be a fucking paragon of moral fortitude, because (I’m told) I’m not even all that bitter about it (though I am, sometimes). I’m happy, when I can get around the depression I’ve carried most of my life too.

I could never live like you. I’d rather be dead. You’re so strong. You’re so brave. How do you do it?

I hear this a lot. It’s actually not a secret, though I think the able-bodied are somewhat afraid of the answers. It’s not even difficult. Most anyone could live my life, probably. I have a good life. My doctors listen to me when I tell them what’s going on with me which is wonderful after so many years of being told I wasn’t in pain because the tests didn’t show anything. I have books, games, computers. Because of the last I have friends and I fall in love about five times a year. (I’ve been working on doing things that scare me and I’m telling people more that I’m infatuated, crushing, in love. And that they don’t have to feel the same way about me at all.) Sometimes I can actually stop writing a story and call it finished.[1]

Here’s how I do it: I want to live. I don’t want to be dead. My life is worth living. It’s not tragic. It’s easy. We’ve all got the means to get acclimated to a new home, new furniture, changes in climate and environment. Having a different bodily environment or neurological environment is just something else to get used to.

The commenters in the Why Are They So Angry At Her? thread have it right, I think. The physio/neurotypical haven’t bothered to consider our lives from any perspective but their own and all they see are limits. They imagine being ill with the flu (which leaves me in bed and miserable and hating it too), or an injury that hurt and impaired their movement but ultimately healed: a sprained joint, a broken bone. (All of which I’ve done also: counting the events where more than one bone broke at a time as one, I’ve broken bones more than ten times though I’m a little fuzzy on exactly how many — broken toes are hard to track.) They recall how miserable being ill or injured was and imagine having a disability (or several) as being ill or injured and thus miserable all the time.

We’re not. Even when depression is part of a constellation of symptoms or a side effect of meds or just something else to live with, we’re not. We’re just living, like everyone. When we hear “I’d rather be dead” it often sounds like “you should be dead.” And with good reason. People with disabilities are killed by those who should care for them. Parents kill their disabled children and the public’s sympathy is with the murderers. Caregivers in institutional facilities kill residents and few people care.

Amanda has written extensively about this at Ballastexistenz, and her Background, to the Foreground post is excellent. Not Dead Yet is dedicated to working against euthanasia and assisted suicide policies that make killing us legal, or at least fuzzy. Lauredhel’s post at Hoyden About Town about Christian Rossiter’s lawsuit to refuse nutrition hits most of the points I try to make when I talk about this issue. It’s despair and isolation that drive us to want to die. The neuro/physiotypical don’t see that part of it.

There are social feedback loops that reinforce these attitudes and keep us isolated. Ignorance and fear and hate go together. Neuro/physiotypical friends and relatives stop inviting us to things after a while. We’ve said we can’t come a number of times: we weren’t up to it for whatever reason that day, the venue wasn’t accessible, we didn’t have transportation. Eventually it becomes habit, justified by unhelpful concern. Whatever place isn’t accessible (it’s too much bother to plan for real utility). Oh, they probably won’t feel up to it (our lives are miseries anyway). Around it goes.

[1] Some of my stories can be found at my story blog, though be warned: nearly all of them involve themes of sex, violence, death, horror.

From the Comments

I wanted to take a bit of time to highlight some awesome comments that you may have missed on last week’s posts. I originally intended to go through all the posts last week and pull up interesting comment discussions, but so much interesting comment discussion has gone down that I’m just going to highlight a few from the earliest part of the week.

In response to our introductory post Welcome to FWD/Forward, Rosa started a conversation about the different ways that disability is talked about in North America vs the United Kingdom:

You use the term someone “with” a disability, I don’t know if this is different in the US but in the UK the disability movement have rejected this term in favour of a “disabled” person. The reasoning behind this is the social model of disabilities understanding that someone is not “disabled” by their impairment but rather by societies reaction to that impairment – thus they do not “have” a disability but are “disabled” by society and the goal is to remove those disabling barriers. So I just wondered what the reasoning behind your use of “with” is?

Chally, Amanadaw, and Oyuang Dan discuss that point in response.

In response to Annaham’s post Defining Disability, Rachel asked about temporarily able-bodied:

I hope this is not an inappropriate question, as I am still learning about these issues, but I wondered about the part of the definition above in which “Disability, additionally, is a term that refers to a long-term or lifelong condition.” Given the preference for “temporarily able-bodied” as the descriptor for those who are currently without disability, can people not be temporarily disabled as well?

Amandaw responded to that in the comments.

In response to abbyjean’s How Do We Understand This Experience?, many commenters responded with their own understanding of their disability, including this from Meg Thornton:

Part of me knows it’s all neurotransmitters and chemicals in the brain. But then again, so is sight, hearing and everything else which makes up the complexity of life. So I’ll keep thinking of Charlie trying for his commission when I get those little thoughts which say “don’t forget, you could always kill yourself” in the middle of things now and then, since it’s easier to just tell Charlie I’m not interested than it is to try and decode all the complex thought patterns which got me to where I am.

Really, all the comments on that post are great.

The comments in Lauredhel’s post Telegram to TABS on Spoon Theory get into another interesting discussion about language, both inclusive and exclusive. A.W. wrote:

For language and spoon theory, I do and don’t have a problem with tab. It fits very, very well for the judging of actions and the conservation of resources when dealing with bodily illness/pain. But deciding on actions and juggling resources also fit for severe depression and other mental illnesses, say, ptsd. (which I’m tempted to post about, but not sure it would go anywhere. Managing triggers (and how much of them you can reliably handle) is a pain in the ass). It’s over and under and – through -, and you can’t get away from it. For me the doling out of spoons when dealing with my mind is incredibly similar to when I’m dealing with body problems. An able mind is just as important. And no, lack of sleep from a kid at 2 am for the third night in a row isn’t the same dynamic. I’ve dealt with those things too, it isn’t even remotely the similar. Perhaps dropping the body bit and shortening it to ‘temporarily able’ would work.

Thank you so much to everyone who’s been participating in the comment threads, giving us feedback, and discussing ideas they’ve developed around or related to our posts. My schedule is such that it’s hard to keep up with comments as they’re happening, but it was great going back through earlier posts and seeing what people had been saying!