Monday, October 29, 2012

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.

24 comments:

  1. Dashed good points. Thank you.

    It's not a bunch of fun for me when parents talk about grandchildren, and that's at least a physical possibility for me.

    Several of the things you mention come under my "unjustified interference" category anyway - it's not my job to tell anyone, disabled or not, whether or how to lose weight unless they've asked for my help or I'm in loco parentis - but clearly this goes beyond that.

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  2. Many of these can be adapted for dealing with parents of children with disabilities. Years ago, Dr. Laura got a call from a woman who was upset that her family planned a big birthday celebration for her father at a fancy restaurant, because she knew her autistic child would not be able to behave well in that setting. She thought a picnic would have been easier for the child to handle. Dr. L was most unsympathetic and IIRC, broached the subject of institutionalization for the child. I know how common it is for parents of children with disabilities to be told they are doing too much/not enough for their children or expecting too much/not enough for their children. I am sad to say I heard a lot of these comments come from my fellow therapists when the parents weren't around, to which I would reply that I doubted I would do any better if the child were mine and I had 24/7 responsibility instead of 30 to 45 minutes a few times a week.

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  3. Content note: Severe disabilities in children

    Coleslaw, that response is horrifying. Of course, Dr. Laura would prefer if we still lived in the 1950s, so it's not that surprising. My mom works with a lot of autistic spectrum and mentally delayed children and I have so much sympathy for their parents. One of my most eye-opening experiences was working for three months with children who were so severely disabled that they would never be able to walk or talk at all. Most of them would probably never feed themselves and would be in constant pain. It was the most difficult job I will probably ever do.

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  4. @Coleslaw, as someone who grew up with multiple undiagnosed disabilities, who was emotionally abused for those disabilities, and whose parents still do not fully acknowledge her disabilities: I think it is completely and totally OK to be critical of parents of disabled kids. A lot of them seriously fuck up. A lot of them are even abusive. Disabled kids are abused frequently and easily. Sorry, but I'm with your fellow therapists, especially since as an autistic person I know how profoundly ableist and harmful a lot of 'autism advocacy' by parents of autistic kids is. I see a LOT of sympathy in popular culture for parents of disabled kids, a lot of insistence that the parents must be practically saints for tolerating their horrible horrible disabled children, and way too many excuses made for parents who abuse and kill disabled kids. Maybe health care professionals are better at calling disabled kids' parents on their shit than popular culture is, I don't know, but I tend to think it's something that's done too little rather than too much.

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  5. @Ana: Great post. Thank you. I'm reminded of how hurt and ignored I feel when I'm given gifts of food that, due to my nut and legume allergies, I cannot eat. It's happened plenty of times, even from family. I was also once asked to bring my own food to a family/family friends' gathering for which I had to travel over an hour each way by public transit, when everyone else was getting food home-cooked by a culinary student. My mother thought I was incredibly rude to tell the people responsible for the food that this made me feel unwelcome.

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  6. @kisekileia I certainly agree that parents of disabled children can be severely abusive, disabled children are more vulnerable to it, and it can be easier for society to accept it without question. That's particularly an issue in children born into families with drug problems or who end up in foster care for a variety of reasons.

    I also believe that parents of disabled children should be given as much social support as possible. (Not just financial.) I think the main problem is that society is willing to criticize parents in general and parents of disabled children even moreso, without offering that needed support. On the other hand, they turn away from actual abuse. It sometimes seems more like telling the parents what to do than actually helping the kids.

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    1. I think different bits of society are happy to criticise practically everyone - I remember an earlier Slacktivite (I think) discussion where someone pointed out that while there are lots of societal criticisms of "bad parents" there are also plenty of criticisms of people who aren't parents (for whatever reason), and of people who are parents of whatever quality (not as common, but very usual in self-declared childfree circles)

      See also: humans are broken.

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  7. Many of those points aren't about "being disabled" but "being unable to accept you're infertile". I might be infertile, but that doesn't mean I don't enjoy hearing about my friends' children.

    Do you expect the world to conspire to conceal the existence of children for your convenience? Because that seems to be what you're asking.

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    1. I don't think it's asking too much for your family and friends to remember that one's own infertility is a painful subject, and to keep the discussion of babies to a minimum. Just because you're handling your own infertility well doesn't mean everyone else can or will. Everyone copes at different rates and with different means, and the support and understanding of the people in your life can often be the difference between staying afloat and drowning.

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    2. Three of my thirteen points discuss my infertility disability, so if approximately 25% equals "many", then I guess it's a fair cop.

      More to the point, it's great that you thought that the best response to a post about how friends and family can be considerate to the disabled people in their lives was *obviously* to accuse the disabled author of wanting the entire *world* to conform to her needs! Which is totally not a criticism that disabled people receive all the time, that we're expecting the whole world to accommodate us like the drama queens that we are!

      Congratulations, here's your ableism mark for the day. Four more and you receive a free kewpie doll from the patriarchy. Now do me the kindness of vacating my thread so I can go back to controlling the world with my disability. I fear only Batman.

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    3. Sounds like your friends and family are insensitive, or maybe just tired that you haven't dealt with it yet.

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    4. Not surprising that your friends are pretty dumb given the shit you write. I imagine anyone smart enough to remember about your baby hangup probably got sick of you thinking you can talk to your cats.

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    5. GENERAL THREAD NOTE.

      While we're sussing out a troll/banning policy, I'm going to leave these posts up as something we can point to as evidence of a problem.

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    6. Anonymous, I suggest that if you are going to personally insult moderators that you at least do the rest of us a favor and pick a screenname so that we know to skip your posts in the future. To quote John Scalzi of the famous Mallet of Loving Correction, "The failure mode of clever is “asshole."" I suggest reading his excellent post on being a good commenter, which I believe applies not just to his blog, but to the entire Internet: http://whatever.scalzi.com/2012/09/18/how-to-be-a-good-commenter/

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  8. [Content Warning: general discussion of triggers, rape, infertility, food allergies]

    Ana, great post, as always. =)

    I feel like this idea really boils down to: don't be a dick to people you care about.

    There are a lot of things that are difficult or upsetting or triggering for the various people in our lives, and I feel like it's our responsibility as empathetic, feeling people to try not to step on anyone's emotional toes if we can help it. It's a horrible, trust-shattering moment when a dear friend or partner can't remember that, oh yeah, you're a rape survivor and scenes of rape in fiction are triggering, or you have a sensitivity to shellfish and even the smell of it makes you nauseous, or (in my case) you're infertile/don't want kids and the constant questions/commments of 'what about babies?!?' are a big emotional strain for you. And you're a bit on the lucky side if the issue that your loved ones can't seem to remember is only emotionally painful rather than physically dangerous (like forgetting that you have a food allergy).

    It's not about insisting that everyone around us shield us from anything that might be remotely painful or that we can't (or won't) deal with, it's about being considerate and empathetic. We're all different, and the things that affect us are different. I'm not going to gush about my upcoming wedding to my best friend who just got dumped, just like I hope that my dearest friends and family can remember that me not wanting and not being capable of having kids means I'm not going to be as receptive to the excitement of a pending birth (though I will try for the people I love). It's just even more important when it's something big (and potentially life-inhibiting/threatening) like a disability.

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  9. This CW is problematic as it could be seen as equating rape and food allergies.

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    1. It just wouldn't be an Original Recipe Troll Invasion if we didn't have someone completely misunderstanding how trigger warnings work. BINGO!

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    2. Only if the person reading the CW were deliberately misreading it for maximal trollishness, or had not yet grasped the purpose of the comma in the English language. So, dear Anonymous troll, which would you like to be: someone without a basic understanding of the language in a space far too advanced for them, or someone without the necessary empathy and intelligence to carry on a discussion in a space far too advanced for them?

      Either way, shoo.

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  10. ......it's a horrible, trust shattering moment when someone forgets you were raped. If someone forgets you're allergic to shellfish and gives you clam chowder and you almost die, that might be a horrible, trust shattering moment. When someone forgets that the smell of shrimp makes you feel sick and cooks jambalaya, thats life and you put on your big kid pants and move on.

    Seriously, slacktiverse. Why is EVERYTHING the same as rape? I thought one of the big things about feminism was that we put rape in its own catagory of Terrible Shit so that it wasn't, you know....normalized.

    Doesn't rape culture feed on the idea that rape is just another sorta sucky thing that happens and everyone needs to move on and stop whining about it? When someone you trust forgets you were raped, thats shows they don't care enough about you to remember one of the worst things that can happen to someone, happened to you. It's not comprable to anything else.

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    1. I thought one of the big things about feminism was that we put rape in its own catagory of Terrible Shit so that it wasn't, you know....normalized.

      Considering that 1 in 4 women are subjected to rape or attempted rape, rape pretty much *is* normalized for many of us. Feminism does not automatically means making rape a Special Kind of Evil. Welcome to the fact that life is more complicated than that.

      It's not comprable to anything else.

      Hi! Rape victim here! Three times over, in fact. As a rape victim, I am telling you that you have no right to police the language of me or any other rape victim. Telling us what we can and cannot compare our experiences to is explicitly not feminism -- you are dictating what we can say and what framing we can use.

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    2. Rape is terrible. Poisoning someone by mistake is terrible. Being a jerk to your friend by telling them how amazing something is that they're terribly allergic to is terrible (because it's mean). But you know what? They're all terrible in different ways. Rape is far more terrible, but that doesn't lessen the terribleness of the others. The fact that you apparently are incapable of or refuse to parse that distinction is not the original poster's fault.

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    3. Also, rape culture doesn't feed on the idea that rape is just another sorta sucky thing that happens and everyone needs to move on and stop whining about it, it feeds on the idea that rape is a very specific thing that involves strangers and dark alleyways and women wearing revealing clothing.

      It thrives on the idea that there a distinction to be made between legitimate rape and all those other rapes out there that don't really count. It thrives on the idea that rape is something so evil, so in a class of its own, that we can't take an accusation of rape seriously when it's against someone we know doesn't kick puppies.

      It thrives on the idea that rape is that thing over there, not this thing over here. It thrives on the idea that the only rape that's really rape is the one that is so visible and violent that everyone, even the rapist, would be forced to admit, "Yup, that was rape," and no one could ever dispute a real rape because it's so far beyond all else that it would have to be unmistakable and unmissable.

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    4. All of them are additionally terrible in the same way, not in the sense of severity, but in the sense that all are the product of an unforced choice to do something that harms another person, whether out of malice or callousness or apathy.

      Comments like the above seek to position progress as a zero-sum game: Energy spent on "minor" issues (read: issues that don't directly impact the commenter) is energy taken away from "major" issues and therefore bad. Frequently, though not always, they're outright concern trolling, trying to pit various causes against one another in a battle for resources.

      In truth, however, they are all the same cause: Battling against malice, callousness, and apathy. A person persuaded to consider the needs of others, to recognize that different people face different challenges, is a person less likely to rape AND less likely to bully AND less likely to be a jerk.

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    5. 'cause of course you can never use two extremes in order to imply the entire spectrum. >.>

      I guess I should have been more specific about the 'sensitivity' (poor choice of words on my part, I suppose). I dunno about you, but with my allergies, they tend to be so severe that even the smell of the object in question is enough to irritate my system. Evergreen trees, for example, are one of the worst offenders for me, and I can't handle the smell of pine-scented things as a result. Which means that around Christmas, I have to avoid stores that sell trees and people who keep real trees in their homes, otherwise I can/will develop nausea, vomiting, hives, and massive, vision-blurring sinus headaches.

      And nausea isn't just a minor inconvenience for me. I struggle with IBS and the after-effects of a nasty bacterial infection that had me nauseous constantly for eight solid months a few years ago. Allergy-induced nausea for me means I might as well pack up, turn in my spoons, and head home, 'cause I won't be able to eat or sleep until it wears off (and no, no amount of Pepto Bismol will help).

      And it's not just Christmas trees that cause it for me. It's a number of other trees, several different species of grass, cats, dogs, horses, cows, paint fumes, purfumes, and any number of things that I might not have come into contact with. And that doesn't even cover the kinds of lower digestion trouble I might experience (and be debilitated by) if I end up being guilted into eating something I didn't make myself that includes one of the dozens of ingrediants my battered digestive system can't handle.

      So I'm sorry if it offends anyone that it seemed like I was equating something silly and trivial like food sensitivity with rape. 'cause the whole point of my comment wasn't at all that we're all different, have different trigger points and disabilities, and so really we should all just be considerate of everyone, 'cause that's what nice, responsible human beings do. And it's not like I'm a survivor of sexual assault and sexual abuse and could possibly be able to say that, for me, personally, my food sensitivity is more of an issue than my PTSD and trauma from my assault. 'cause that would totally be proving the fact that everyone deals with rape differently, and rapes are as myriad and complex as the people who both commit them and have them committed against them, which everybody knows isn't true! ;D

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