Disability: Remembrance

[Content Note: Disability, Infertility]

Possibly my favorite two posts at Shakesville is Liss' two-part series on disability and remembering. (Here and here.) Liss discusses something that I'm not sure I've ever seen discussed elsewhere: that part of being an ally to the disabled means remembering that they are disabled. That part of loving a disabled friend or family member means not forcing them to repeat, over and over, that they are disabled.

Failing to remember, thus obliging someone to repeatedly disclose a disability, also risks making that person feel like they're "talking too much" about hir disability, or "complaining." Many people with disabilities have experienced criticism for talking about their disabilities, or have been on the receiving end of exasperation expressed by someone who doesn't want to hear about it, [...] We often struggle to strike a balance between making sure people around us are aware of our disabilities and not playing into perceptions of attention-seeking, and "forgetting" makes finding that balance all the more difficult.

I know that this isn't always easy. I know that there's a big difference between living with a disability and knowing someone with a disability. I don't expect people who are able-bodied to instinctively grok every facet of disability or to understand instantly and immediately every thing that a person with a specific disability can and cannot do. Disabilities infiltrate our lives in strange and unexpected ways, and I recognize that the ripple-effect is not something that can always be instinctively intuited. This is not a post about "grr, able-bodied people who are not psychic". That is not this post.

But this is a post about life as a disabled person surrounded by people with able-bodies. People who sometimes fail to remember, and who perhaps sometimes don't even try to remember. (If nothing else, consider this fodder for that disabled character you've always thought about including in your NaNoWriMo novel.)

Being disabled means that people who know that walking hurts you will still turn around and opine that you should walk more often because that's what their health magazines recommend.

Being disabled means that people who know you cry at commercials with babies in them will still call to tell you that they bumped into your childhood friend at the mall and she had newborn infant twins.

Being disabled means that people who know that you have a handicap parking permit will still park at the back of the lot because it's "less crowded" back there and everyone "needs the exercise" anyway.

Being disabled means that people who know you are infertile will still rush to tell you that they're pregnant and will expect you to shriek with joy and ask All The Details because of course you must care.

Being disabled means that people who know you can't easily sleep in hotel beds will still apply strong emotional pressure for you to come visit them because they haven't seen you in so long.

Being disabled means that people who know you can't walk long distances will still plan family vacations at enormous national parks with no public transportation options or handicap paths for wheelchairs.

Being disabled means that people who know you can't have children will still expect you to listen to stories about their children and react with enthusiasm and happiness for them.

Being disabled means that people familiar with your lifetime of difficult and painful experiences with dozens of unsympathetic doctors will still insist that you just need to keep looking for the "right" one.

Being disabled means that people who know that an activity hurts you will still forget, and ask for an explanation again each time, for why it hurts you even if you do it just so as they suggest.

Being disabled means that people who know you are disabled will favorably compare you to all the other awful disabled people who aren't really disabled, but just lazy and unhealthy.

Being disabled means that people who know you are disabled will express sympathy that you are disabled while still making it clear that you really need to stop talking about it "so much".

Being disabled means that people who know you are disabled will explain to you why disability accommodations are bad for businesses and reflect inappropriate entitled attitudes.

Being disabled means that people who know you are disabled will tell you that your experiences and opinions are wrong because they know other disabled people who feel differently.

Most of all, being disabled means that usually when any of the above happens, it happens from someone you liked or loved or trusted. It's family members, lovers, and friends who often drop an unthinking, unremembering sentence into the conversation, about how you should like cute babies more, or travel more often, or walk a little more for your "health". It's the people you trust who haul out platitudes about how wonderful the medical establishment is, despite being blissfully free of your own experiences with it. It's the people you care about who get several months into planning that family vacation to hike up Mt. Everest before you have to remind them -- gently, haltingly, tentatively -- that thank you but, ummm, you won't be able to attend. You have that whole disability thing, remember? And, no, you can't just shake it off for the sake of seeing the whole group, even if everyone really was so looking forward to seeing you again. Sorry!

Being disabled doesn't just mean missing out on dozens if not hundreds of fun things in the course of a single month. Being disabled doesn't just mean counting and hoarding spoons, and having to consider things like "if I walk to the cafeteria with the rest of the group, will I have the ability to get back to my desk afterward?" Being disabled also means having to explain that thought process and the need behind it over and over and over again to people who are otherwise remarkably intelligent and possessed of strong memories. Being disabled means apologizing -- profusely and obsessively -- for not just having the disability, but also for having to remind people of it.

Being disabled means, more often than not, feeling terribly alone. Not because the people around you don't care about your disability, but because they're so unaffected by it that they have the ability to repeatedly forget about it.

If you are an able-bodied person, and if you really care about the disabled persons in your life, please try to remember that they are disabled. Create an opening for them to talk about it in ways that makes them feel like they're not ruining your day by bringing it up. "I'd like to plan a group hike, but does that mean you won't be able to come?" reminds them that you know about their disability and that they have a space to safely talk about it. "Would it help if I didn't talk about cute babies for awhile?" gives them the space to say that, yeah, maybe that would help. "I'm sorry to have forgotten, but are you capable of doing this activity?" at least clarifies that you do remember their disability, even if you don't remember every aspect of it. (And then when they tell you yes/no, don't grill them about why or suggest alternative ways that they should try to approach the situation. Try to remember that living with a disability means that they've put hundreds more hours of thought into the problem than you have.)

Being an ally to people with disabilities means remembering that those disabilities don't stop existing whenever you're not looking.


Julie said...

Being disabled is being told that people don't know how you do it when it's just your life.

Being disabled is being told that yeah, they're really exhausted, too, when their "really exhausted" means "I really partied at that tailgate and maybe need a nap" and my "really exhausted" means "sat on the floor of the tub to take a shower because I didn't have the spoons to stand, but hey, sparklepoints for showering!"

Being disabled is being told you don't have company spirit because you aren't attending after-hours happy hours even though they know you've got chronic fatigue.

Ana, thanks for writing this. It's nice to be visible for a change.

Elizabeth said...

I appreciate the content of your post, but you completely lost me as a reader when I saw your responses to Maddie above. I don't have children, I intend to never have children, and I'm no fan of the whole concept of stay at home parents, but it really bothered me that you ran right over Maddie's explanation that she has depression because apparently to you infertility is a major disability but depression isn't? Your article is the first I've seen infertility categorized as a disability, and I do see how that makes sense, but your utter lack of sympathy for somebody else's disability and your apparent nger that Maddie didn't immediately understand exactly what you meant made the whole argument of your article seem false and self-serving.

Aidan Bird said...

Thank you for writing this. It's a good reminder.

It reminds me of my friend who has dyslexia, and how she really hates it when people expect her to read things quickly, or write quickly, or spell well, and so on and so forth. She calls it an 'invisible disability' and often tells me how humiliated she feels when she messes up writing down information at work, or has to have a counselor help her prioritize the things she can do and then set up with her professors extensions for the things she simply cannot finish in the short time period they've given her, and so on and so forth. She says it's really hurtful when her friends forget, and her family. The last four in particular are the ones that summarize a lot of what she's said to me. I never really know what to say when she talks about these things, often crying about them as well, so I just sit and listen and offer a hug.

It kinda reminds me how what she calls the "invisible disabilities" can be such a huge range of disabilities, and these people may or may not be able-bodied. It reminds me of how our culture just assumes everyone is able-bodied and has not disabilities, and how our culture kinda sucks at accommodating and acknowledging respectfully that disabilities exist.

So thank you for the reminder.

Tigerpetals said...

And no phrasing like this 'she doesn't like it because it gives her a headache,' when you're suffering from a sensory overload that is, to put it lightly, worse than any ordinary headache as I've experienced them. When all they have to do is just lower the volume of their voices, especially since we were trapped in a car at the time.

No 'why won't you just adjust to us?'

And definitely no dismissing and interrupting when one is talking to say 'I already know, I suffer so much because you do/won't do this, I know you're going to say it's worse for you but it's not and I know more than you and I've put a lot of thought into it.'

AnonaMiss said...

Tangent, the comments on that "women who hate women" post depressed me a great deal.

Back to your post,

/gentle applause

I don't have anything to add to what you've written here, but I approve of it.

Isator Levi said...

I believe you missed the one where a family member compares you to another family member with a comparable, but less high-functioning, disability, and says that it's "bad enough to have to deal with them".

(This is meant for the thread, I can just only Reply to specific posts from here)

yulaffin said...

From a disabled person, thanks.

Timothy (TRiG) said...

Well, as a hillwalker, I must admit to a certain amount of sympathy for those arguments. (Part of the point, for me, of hillwalking is being in a place you couldn't possibly have got to by vehicle.) And besides, generators are noisy.

I do know that I'm sometimes a little too judgemental of people who are too "lazy" to walk places. I'm getting better at that, slowly. Largely by reading certain blogs, including this one.


ZMiles said...

From an environmental perspective, I'm also sympathetic to some of the arguments -- I can understand, for example, how putting a paved road for cars through a forest could mess up things like wildlife walking patterns, scare away animals with car noises, screw up water runoff paths, etc.

But I think a lot of times administrators/businesspeople just get to the complaints and stop, instead of considering how to solve the problem in a smarter way. Supposing for the moment that cars/a paved road will in fact despoil a site, aren't there other alternatives that could still accommodate people that wouldn't? One idea I've seen suggested is that people drive to the edge of the forest or park, at which point the park service provide a few electric buggies (possibly with ranger drivers) that can be used to transport people who cannot otherwise hike the traisl. No gas, no emissions, fewer vehicles in motion than if everyone was allowed to drive (so fewer effects on the wildlife), and if the buggies are robust enough perhaps there doesn't even need to be a paved road, but people who are not able to walk a rough trail can still go through the forest. There may not be a perfect situation that accommodates everybody while leaving the site completely the same as before, but perhaps there are better solutions that accommodate more people than is currently the case.

Or for the generator problem -- it may well be an important accommodation to have generators on-site, for people who require power (e.g., someone who has an electric wheelchair and will be in the woods longer than their battery power will last; someone who needs to remain in fairly constant communication with their doctor, and so needs a computer with power, etc.). But maybe are there ways the side effects could be mitigated or removed. This isn't an area I've studied extensively, but maybe there are quieter, or less polluting generators, that could be used, or other ways of storing power.

Makabit said...

This does not really connect to the point of the post, and may, in fact, be somewhat against it, but I have to say that one of the things that always really impresses me as an educator is running across a kid who's been socialized to request support for his or her disability, with no apologies.

First class I subbed as a student teacher, I had a kid in the room--I didn't even know anyone's name yet, weird situation--ask me to go over the directions with him. Having been told to DEMAND ACCOUNTABILITY, I said sharply, 'the directions are on the board'. This fourteen-year-old boy looked the cranky thirtysomething in the eye and said, "I have a learning disability. It will be easier for me to understand the directions fully if I hear them read to me. Will you please read me the directions from the board?"

Shut my mouth. I apologized and read him the directions off the board. He thanked me and got to work.

I've worked with too many kids since then who have not learned to do this, and are actively trying to hide their disabilities like hurt baby lions. Because that's what they figure they have to do to get along. Sadly, they're often right.

Smilodon said...

My university has a policy that you should teach assuming that there are people with learning disabilities in your classroom, and work off that assumption, rather than assuming there aren't until they make themselves known. So you can't do anything that would make a disabled person's disability stand out. For example, you can't ban computers from the classroom, and then make an exception for the student with a learning disability. So everyone gets their computers (because "needs to take notes in non-traditional ways" is not that unusual a learning disability). It has some unintended consequences (in that example, how do you stop students from facebooking all class?). And since there are so many kinds of disabilities, it can be nearly impossible to actually follow - for example, we didn't anticipate a student with poor eyesight when set up an assignment to learn how to identify rocks (many features can be felt, but some of them really have to be seen.) But despite its problems, I think it's a good way to think about the world.

Makabit said...

I was once in a class where we were being taught a method for teaching math concepts with M&Ms. The instructor got paired with me. At some point he asked, 'are these green'? The one he was pointing to was, so I nodded, then realized he'd put all the greens and reds in one pile. Ah. We sorted it out. But a kid of the age we were preparing to work with wouldn't have necessarily made the link to color-blindness.

ZMiles said...

Another one I have seen is that accommodations discriminate people with different disabilities, e.g., "If we allow service animals, people who are allergic to those animals can't come in here."

Another is that the accommodation destroys or diminishes the activity they were meant to accommodate for. This often happens with natural parks and offroad locations, e.g., "If we pave this nature trail so people in wheelchairs and scooters can use it, we will be diminishing the natural, untampered beauty of the park. If we install generators for people who aren't able to build their own fires, we'll be emitting smoke and worsening the air."

The second one sometimes is hidden within an argument that too many people can spoil certain activities. I read a long article once by a forest ranger lamenting the modernization of national parks (paved roads, electric power). Without that stuff, only a few people made it out to remote, scenic parks; there was enough firewood and other resources to go around, the environment looked clean, they didn't disturb the animals, etc. He argued that once paved roads and other modernizations were put into place, everyone went camping, and the parks became crowded, trash-filled, had altered wildlife patterns (from people feeding animals, or animals able to eat the copious amounts of trash), didn't have enough firewood for everyone, etc. Of course, the paved roads, etc. might be necessary for some people to see the park or whatnot in the first place; the environment might be less 'altered by man' if the only way to get to it is to hike ten miles of terrain on foot, but many people will not be physically capable of seeing that environment.

Maddie said...

Being disabled means that people who know you can't have children will still expect you to listen to stories about their children and react with enthusiasm and happiness for them.

Ana, a truly good-faith question here. Some background: I'm currently a full-time parent. My life revolves very much around my 17 month old son. I'm also struggling with ongoing postnatal depression (though it may just be ordinary old depression, because I've had that on and off for years), which, again, revolves in part around my son. I kind of...don't have much of a life of "my own". I'm aware of how much talking about him can dominate my conversation, because that's what I do 24 hours a day, and I try not to focus entirely on him, whomever I'm talking to, because OMG, boring. And certainly if I'm dealing with people who I'm aware have fertility issues, I try to stay off it and be empathetic.


This is my LIFE. How can I even begin to even answer the question "how are you?" without getting into it? Whether we're talking about the ways I'm happy and healthy or the ways I'm unhappy and unhealthy, my son is always part of the equation, because he's usually the cause of both. I cannot, at this stage of my life, talk about myself without talking about him. So how do I manage this? I don't have particular expectations of people's reactions, and certainly I wouldn't judge anyone for not being super-enthusiastic or saddened or anything else. But I can't entirely avoid the existence of my child in conversation. Even if I wanted to, he's usually going to be physically present, probably doing something cute or demanding attention in some way, and he affects my wellbeing almost every minute of my day.

I can't deny that there are probably lots of parents who are completely insensitive to the pain that their focus may cause others, so it may be that I'm already being exactly as sensitive as I need to be. But my son exists, and my life does, at present, centre on his care, and I just don't know how on earth I could leave him out of a conversation without leaving myself out too, so if you have suggestions, I would welcome them.

Camas Blues said...

I have PCOS, a somewhat complex endocrine disorder that causes infertility in women (among other things). I know from my own experience that people are frequently not supportive nor understanding of the emotional struggles of infertility. Many poo-poo it or talk it down as No Big Deal. I learned quickly to talk about such things with only a few people I knew were supportive listeners. Otherwise, I don't talk about it.

Anon said...

Content note: infertility, miscarriage
Ana and anyone else who is dealing with infertility please feel free to skip this comment if you don't feel up to it. I'm just in a sad situation having to do with infertility and I would appreciate any advice in how to best support my friends.

I have a few friends and family members who are dealing with infertility. I had never been interested in dating/marriage/children, never dated in high school or university, so I ended up being a fairly dependable single/childless friend. I think this contributed to the comfort my friends and extended family felt in coming to me with their difficulties. And then because I became a support in their difficulties we became closer.
Unexpected and unplanned and years after most of my age group I did end up falling in love, marrying, and then, over this past year, dealing with miscarriage. My friends were a great support to me. And now I'm pregnant again, and this time it seems to be progressing successfully so far. The further I get the more awkward things seem to become with my friends.
I do not DO NOT want them to feel obligated to show support or excitement or anything that so many people have made them feel obligated to do or be in the past. If they need to avoid the situation entirely then I will never hold it against them. If I don't hear from them for months or years or however long they need, then I will miss them but I will not hold it against them.
But I would miss them terribly. I don't want to lose them. I want to do everything I can to help them to be comfortable being around me. I don't talk about it unless they ask. I don't push to see them when they always seem to be 'busy' when they weren't before.
Is there anything I can do?

Kelly G said...

I grew up surrounded by Guideposts and other wonderfully "inspiring" stories of overcoming adversity. I was told over and over that there are always people "worse than you" you could have cancer! My family really thought that I could gain inspiration in a "s/he did it so can I" sense. Instead it seemed to increase my imposter syndrome feelings. Combine that with the mind bending "you are such an inspiration. You are so strong. I could never do what you do....." whiplashed with "it's not that bad. You don't hurt that bad. You were walking without crutches this morning. You can hear/see me you just aren't paying attention".

I still struggle with all of this nonsense that was internalized. So many of these nuggets come down to hey non disabled people == it's not always about *you*!
(I have a degenerative collagen disorder/am a tall little person/ severe hearing impairment/visual impairment that's gotten worse/asthma and assorted upper respiratory crap and congenital gastrointestinal issues and bipolar/ptsd to boot)

And yes there are good days and there are bad days. Not having a consistent disability drives people mad. And drives all the childhood "faker" flashbacks le'sigh.

That said, I have an awesome partner, good family and friends. They all mean well but sometimes struggle.
The issues with the public are well, some times I handle them better than others. I admit that I get a wicked joy when some older woman has been shooting me daggers for daring to park in a disabled spot while young sees me pull out my canes. Oooooops.

Lily said...

Being disabled means that people who know you are disabled will express sympathy that you are disabled while still making it clear that you really need to stop talking about it "so much".

Content note: Cerebral palsy, family issues, people with disabilities

I tell myself off for this frequently; my CP is moderate, so my (able-bodied) family gets upset with me when I complain infrequently about it. "There are people who have it worse than you and they do more than you do." There's very little support when I do things I'm proud of--getting a guy to like me doesn't count because "it's the internet." It's just frustrating to be told I'm not doing enough.

Being disabled means that people who know that an activity hurts you will still forget, and ask for an explanation again each time, for why it hurts you even if you do it just so as they suggest.

This is especially true regarding my hyperacusis. Last night we were at a place where there was live entertainment every few feet and I would kindly (as kindly as I could while I was having an anxiety attack) ask them to please push the wheelchair faster, but tney just wouldn't do that. They should be aware that being around audience applause triggers my hyperacusis, so why don't they get it?


jill heather said...

Although I do not agree with all aspects of these arguments, I will summarize a number of the Accommodations are Bad For Business arguments. These are, as far as I have seen, the most common general arguments.

Cost: if I have to pay to put in a ramp (for example), then I cannot use the money for other things, which are -- by implication -- more important and/or more cost-effective.
Space: if I need to have wider aisles/stairs AND a ramp or elevator/a larger bathroom stall, then I cannot use that space for more productive activities. I have to have fewer aisles and therefore sell less stock or restock more often. I have to have fewer tables in the restaurant. I have to have fewer bathrooms, or spend more of my floor space on bathrooms.
Fairness: if employee or customer A gets accommodation A, which is a nice perk for all employees/customers but actually only needed for employee/customers A, then it's not FAIR and employees/customers B-Z will see and want the same or complain or it will make them dislike A or perhaps the entire company. You can see either "special chairs and desks in an office" or "service animals in a food service establishment" for examples of these.

And for the record: I am for disability accommodations. I am merely summarizing arguments against them, not making these arguments myself.

Maddie said...

Thank you, I appreciate this response a lot, it is really helpful and clarified what I was, for some reason, getting confused about. I'm not doing any of those things you list, and I wouldn't do them, even by accident, because that's not how I roll (though clearly I can use the privilege check occasionally!). I think your post just sounded so painful that I didn't want to be the asshole who was making life harder for certain people in my own life when I could be, you know, NOT THAT. Maybe trying too hard to be sensitive is nearly as bad as not trying at all, because you're absolutely right, it's not sensible (or, indeed, respectful) to try to surround people with cotton wool by trying to pre-empt their reactions and avoid them. (Huh, just realised, this is something that my sisters and I do with my mother about everything more or less constantly, for various reasons which are relevant only to her, and are not useful when dealing with people who are NOT her. But it's not a good habit to be in.)

Thank you again.

Anna said...

Speaking of "wait, who does that?" reactions, I had one to this sentence in the OP:

Being disabled means that people who know you are disabled will explain to you why disability accommodations are bad for businesses and reflect inappropriate entitled attitudes.

...seriously? Who believes that? Either the "bad for business" part ("Allowing more people to access your business, thus expanding your potential customer base? Clearly a recipe for failure!") or the "entitled attitudes" part (I'm guessing this is the same logic as the logic that says it's "entitled" for women to want to be paid the same amount as men, right? And I use the term "logic" very loosely there). And just grr: it's not like being able-bodied has to mean you're an unempathic twit, damn it.

Maddie said...

That is an excellent example, and, yes, that was where I was coming from. Like..."who does that? Am I accidentally being that kind of jerk when I can't stop talking about the little bugger for ten minutes in a row? Argh!!!" I mean, clearly, I needed to think twice before posting (though this has been a useful conversation for me, in terms of looking at my own privilege and how I manage it), but honestly, those examples you mention...who DOES that? (And who on EARTH tries to put harmful foods on people's plate? WHY WOULD YOU DO THAT?) Sure, I think my cute baby stories are cute, but not everyone is in the mood for/likes cute babies even if they have no fertility problems, so why try to police their reactions instead of trying to modify your own raptures?

Maddie said...

Ana, I'm sorry if I upset you, that really wasn't my intention. Nor was it my intention to come across as though I wasn't hearing what you were saying. I did hear what you were saying, and I was truly, genuinely asking how to be more sensitive. I wasn't trying to say, "oh, poor me, I have a baby and I have to talk about him, boo to the disabled people who struggle to react as I think they should", at all. I wasn't trying to mount an offense, I wasn't trying to get you to reassure me, I was trying to do exactly what you say here:

you ask them to clarify their words rather than mount a long offense against what you imagine them to be saying.

I was trying to ask you for more guidance. That's it. Clearly, I didn't do it as well as I had hoped, and I know intentions aren't magic, so I'm truly sorry that my words had this effect on you. What I was endeavouring to do, however poorly, was to explain why it is, for me, challenging to discuss MYSELF (or life in general) without discussing my son, even if I am trying to stay off the topic, trying to respect people's possible feelings. My point wasn't that you said I couldn't talk about my child, it was that I want to be able to to respect other people's feelings and that is genuinely not the easiest thing to balance because I lapse back into going on and on about him without noticing it, which, actually, I can see myself doing above. But I was genuinely asking for advice from someone who knows about being on the other side of the conversation. I just...did it wrong. I'm sorry.

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