Please, Tell Me More

One of the many problems which people with disabilities of all genders experience is well-meant advice. How is advice a problem? Well, it plays into a long history of infantalization of people with disabilities, and it’s a reminder to us that non-disabled people often believe that they know what’s good for us. The fact that people routinely believe that they know more than we do about our bodies is a very serious problem, because it’s this attitude which can lead to inappropriate medical treatment, institutionalization, and abuse.

All of us can relay some version of the following conversation:

Person With Disabilities: “…yes, I have [condition].”

Person Without Disabilities: “Oh, my [cousin/friend/mom/brother/etc] had that! You know what worked really well for them?”

Person With Disabilities: “…”

Person Without Disabilities: “This great medication!/A raw vegan diet!/Yoga!/Etc.”

Person With Disabilities: “Uhm, thanks.”

Person Without Disabilities: “Here, let me get you the info!”

So, here’s the thing. This kind of dialogue? Is actually not very helpful. Because people with disabilities are actually a bit more knowledgeable about their bodies, conditions, and comorbidities than random people they meet. Many people with disabilities are, in fact, working on various ways to manage their conditions. They might actually not be that pleased that they are having to share information about their personal lives for the purpose of asking for accommodation, clarifying a situation, or providing general information about themselves. Which means that they are especially displeased when people offer unsolicited medical advice.

They’ve probably tried or considered all of the things being brought up by the well meaning advice monger. And some of these things may even be working! Others may not! But, neither of these things is the business of a stranger, unless a person with disabilities specifically says “gee, I just don’t know what to do about my [condition], anyone have any advice or experience with it?” Or unless that stranger is a doctor whom the person with disabilities is consulting specifically to talk about treatment options, in the privacy of a medical practice.

There’s this idea which some non-disabled people seem to have that we are “broken” and we need to be “fixed” and we’re just not trying hard enough to fix ourselves. Or people are giving us the wrong advice. Or we don’t know how to take care of ourselves. If only someone would just tell us what to do, this logic goes, we would heal ourselves and be all better.

This same logic is used against other marginalized groups. Men sometimes tell women how feminism should be. White activists tell black activists how to address racism. Heterosexuals tell LGBQTAIs how to achieve full civil rights. In all of these cases, we have a situation in which someone in a position of power is telling someone in a position without power how they should behave. How they should access power. How they should live. What they should do.

Can one see how this might be a problem?

Can one see how this might intersect specifically with feminism?

One of the big problems with mainstream feminist dialogue around disability is the pernicious idea that people with disabilities need to be fixed, that being disabled is a horrible and tragic plight, and that people would naturally do anything to avoid becoming/stop being disabled. I wouldn’t say that this is necessarily the fault of feminism; rather, it’s the fault of the culture we believe in, because these are widely held cultural beliefs. But this is the thought process which allows mainstream feminists to only bring up disability issues in the context of reproductive rights (because, of course, no one would want a disabled baby!).

Were mainstream feminists to stop to consider their thought processes, they might see how their actions are playing into a system of oppression similar to the one used to keep women subordinate for centuries. “They’re childlike! They can’t make decisions on their own! They need guardians! They should be institutionalized!” These are all sentiments which continue to be aimed at people with disabilities, and which have a history of being used to marginalize women. Should women be using them against people with disabilities, let alone women with disabilities? I think not.

Problematic attitudes like these are one of the things we are hoping to spur people into examining with this website.

If you are currently able, when was the last time you provided unsolicited medical advice to someone upon learning that ou had a disability? If you are a person with disabilities, when was the last time you received unsolicited medical advice or other advice about how to live?

32 thoughts on “Please, Tell Me More

  1. That would be yesterday, when my MIL helpfully suggested that if I stopped taking painkillers, I’d feel better. Addiction is nasty stuff, donchaknow.
    .-= Personal failure´s last blog ..A Psychological Study =-.

  2. Just this week for the umpteenth time someone suggested goji juice. I am sick of hearing about that damn juice as a miracle cure for everything that is wrong with you. Someone always has a brother, sister, cousin, aunt who drank the damn juice and is now capable of walking on water or running faster than a speeding bullet. There is always the implication when you show frustration, that you really don’t want to get better cause spending your days watching bad television because the pain is so strong, is what you always dreamed of.
    .-= Renee´s last blog ..Drop It Like It’s Hot =-.

  3. My mom is big into new-age stuff (often tied into some Multi-level marketing scheme, sigh) and every time, she’s all “Oh, just drink X twice a day! You might be able to cut back your therapy!” “You should see a chiropractor- it might fix your thyroid!” “Have a Z shake in the morning! It contains all the nutrients you’ll need for the rest of the day, and it cures EVERYTHING EVAR *and* you’ll lose weight!” (I don’t want to lose weight, which she seems incapable of understanding.) And damnit, it took me… a year and a half to figure out the right dosage to treat the damn depression, and I’m just now on an even keel. (and part of me thinks, what if it works? what if I could just fix everything with this magic juice and I’m just being stubborn? Shouldn’t I try it? Even if it has no scientific basis at all?)

    And I just *know* she does this to anyone else with a medical condition she meets. ugh.

    She’s very into the whole law of attraction, “The Secret”, we-create-our-own-reality stuff, so there’s always an undertone of “If you just think positive…!” that chaps my hide.

  4. Insufficient Data, I think your mom might be my grandmother. Her thing is Sh4k133. (Apologies for the 1337sp34k; I believe in naming names to stop protecting the guilty, but I don’t want it to be searchable either.) The medications I take — especially psychiatric meds and narcotics — are really making me sick and I’d feel so much better if I got off them and didn’t I ever go looking for other doctors to see what someone else might tell me that might be different?

    NO. No no no no no. I don’t owe you an explanation either so suck it, grandmama. (I don’t actually say that.)

    And The Secret is 180-proof evil. It’s nice Oprah got up and said what she did about the woman who had cancer and was going to stop treating it medically and visualize herself free of cancer, but that doesn’t really change that the sort of thinking behind The Secret is what she’s built her career on.

  5. She’s very into the whole law of attraction, “The Secret”, we-create-our-own-reality stuff, so there’s always an undertone of “If you just think positive…!” that chaps my hide.

    Oh, The Secret. Hate it. It seems like it’s a philosophy that is very attractive to people with a metric ton of privilege, both abled and otherwise.

  6. How about when someone with your disability does it? You’d think it would be useful/helpful, yes? Well I suspect I have fibromyalgia or ME (finally seeing a rheumatologist at the end of this month) and mentioned this to a friend of my boyfriend. She started going on about how she “used to have ME” but went to some clinic in London where they do some new-agey type treatment (it involves poking different parts of the body repeatedly) and now it was all gone, so “you should go there, you’ll be all better!” Yes, I’m sure!
    .-= Anji´s last blog ..Blogrollin’ =-.

  7. There must be something about grandmothers.
    I live with mine in the summer, and she vacillates between not believing there’s ‘anything wrong with me’, and finding wacky ways that other people were cured of fibro. Like some kind of sugar substitute pills, or tai chi, or something to do with getting excess copper out of my bloodstream (yikes). She constantly passive-aggressives me about taking Lyrica, which I’m simply not willing to give up.
    I know that she’s just worried, but it’s really draining to have her constantly on my back about what I have to do to be functional, and how I should *really* be doing XYZ. Blarrgh.

  8. Thank you for this post.

    While I don’t get “But you should try __!” very often (*very* fortunately), I’ve internalized this crap and often end up thinking that I should be doing something else and what I *am* doing is Not Good Enough/Very Bad.

    I take Zoloft. It’s a tool to help manage my anxiety and depression, and one that makes it possible for me to use other tools. I’ve taken it for years, with no major side-effects that bother me. And yet, I still get scared by all the horror-stories of how dangerous anti-depressants are, how natural alternatives are better, etc., etc. And I think: “Oh my goodness! I should get off Zoloft!”

    But, see, Zoloft has helped me. It’s just one of many things that help me: including some of the non-medical things that for some people are alternatives to anti-depressants. And I’m not aware of any side-effects from the Zoloft that bother me. (I am asexual; perhaps the Zoloft contributes to that, but even if it did, being asexual is not something I mind).

    So, at this point, there’s no reason for me to be particularly worried about taking Zoloft. But I feel like I *should* be, sometimes.
    .-= Tera´s last blog ..New blog of awesomeness =-.

  9. I got it yesterday from a psychiatrist who declined to see me because he “only treats patients who have An Interest in Actually participating in active therapy and getting off their medications,” caps added for emphasis. “I’m sorry, that’s not possible for me, but I am in active therapy as well.” “Good luck! *click*” First of all, he hung up on me. Second, he was patronizing, and third, I totally dodged a bullet there, I think. With that tone, I wouldn’t have seen him for long anyway.

  10. Quick explanation: I know that a lot of people don’t consider menstrual periods a disability. The severity of dysmenorrhea and menorrhagia that accompany mine do make me consider my own menstrual issues a disability.

    So far this week (which happens to be live on the bathroom floor and barf week), I’ve been told that if I:

    — got on the (birth control) pill
    — switched to tampons
    — used Aleve instead of ibuprofen
    — tried a different pill… there’s more than one, you know!

    … then my menstrual problems would magically disappear.

    As if I haven’t spent half of my 28 years working through various solutions of my own. As if I’ve been living under a rock and haven’t heard of birth control or tampons before. As if my list of what I’ve already tried isn’t even more extensive than what a lot of people can suggest.

    As if, if I don’t react to their advice as if it’s my own personal godsend, then I must not really want to “get better”.
    .-= Tori´s last blog ..And I Didn’t Even Mention Viagra =-.

  11. Dear frogs and fishes yes I think you did dodge something unpleasant there. A psychiatrist told you that? I’d be tempted to contact the medical licensing people and file a complaint. If that weren’t usually a waste of time and they ever disciplined physicians for anything that didn’t make TV news.

  12. Since I don’t identify as disabled, I posted my story on my journal with a link here – which has magically appeared in the CommentLuv box, saving me constructing an html link! Wow!
    .-= Legible Susan´s last blog ..Unsolicited advice =-.

  13. I HATE it when people do this! Their advice is usually unscientific and delivered with an air of know-it-all. Most recently I observed a conversation in a chat room where a man said his wife has lupus. Another man proceeded to tell him to try the Water Cure. That’s right: he told him SALT AND WATER will cure her, and that even if it doesn’t work they’re “only out $30”. I tore into him at that point, to save the first man from having to explain why not wanting to try this cure doesn’t mean he doesn’t love his wife. People have no idea how destructive their “well-meaning advice” can be.

  14. [yes, being anonymous here, I need things not to be googleable]

    I have MS. Mine is still an invisible disability: I can cover up most of the balance issues by leaning on partitions and columns and such. People who don’t know me well don’t keep track of how often I stay home, resting. (Yes, I work full time. It’s a sit-down office job. It doesn’t leave much for an offline social life.)

    I was being fitted for boots a while back. The process involved standing up, having my foot traced, etc. I needed to lean on someone while doing so, rather than stand on one foot, on a bench. So, they asked why. I explained. And was treated to a speech about “natural” healing, vitamins, etc.

    I didn’t feel confrontational, so I just said “I do yoga.” This happens to be true. The doctor has stuff to treat some symptoms. They have stuff that may stop things getting worse. For balance, I can do yoga. I can hold handrails and move slowly.

    But I didn’t have the energy to ask this random stranger where she’d studied neurology or immunology. I had asked and gotten a small favor, which changed the (metaphorical) balance of the situation.

  15. The thing with me is that people suggest stuff to me ALL the time. And it depends on my mood as to how I receive this information. Sometimes I do get really annoyed because it’s stuff I’ve heard several times or because they assume that it HAS to work because it works for their friend/spouse/acquaitance or I’m just not in a good mood that day.

    But most of the I’m actually really interested in what they recommend and suggest because my disability (it’s not considered a disability by most people or medical professionals but I don’t fucking care IT IS!) is…very mysterious. Medical professionals have no idea how to “fix” me so I’m very open and willing to anyone that might offer any type of suggestion that even just might be at all helpful.

    But I do understand how for other people it is very annoying to constantly be told certain things are supposed to be good for them or help them or what have you. Everyone is different as to how they react to this kind of thing.

  16. I get very tired of the people telling me that a gluten free casien free diet will cure my epilepsy and autism, same for the comments about my son’s autism, it annoys me especially the fanatism with which some people must go on and convert people to their natural cures. To me it always seems odd it comes after complaining how constrained they feel following weird diets. My mom went through a period of trying natural cures and prayer when I was young but she got over it. the secret thing also irks me to no end , you can’t just think it so, I used to watch Oprah with my grandmother before , she died ( my grandmother, Oprah’s still alive) and we would keep track of her “let them eat cake ” moments.

  17. I would report that psychiatrist, but he’s one of the only ones in the city who takes my insurance, and I know of people in the area who would be interested in that. If you want to and can work toward that, great! But since I can’t, don’t shame me for taking medication for a serious life-long condition. Reading through these comments makes me so angry. As if we hadn’t thought of these things! No one should feel ashamed for doing what works for them.

  18. The thing about The Secret is that it’s a complete hackjob of the Law of Attraction anyway. The very last part of the LoA says that after you visualize what you want, you let go of the result, because what you want or need may not take the physical form you imagine. The LoA is wooey enough, but The Secret is just frigging dangerous. The very idea that you can control not only every thing that happens in your own body and mind, but everyone else’s too, just by “thinking right,” is preposterous. What if you and the other quarterback both visualize throwing the winning pass for the same game?

    I actually have a therapist (who I otherwise like a lot) who’s trying to get me to try GF/CF, which I really do not want to do. I’m willing to eat less of that stuff if it will help me, but I think it’s a pretty tall order to eliminate all of it forever. Gluten and casein are in frigging everything! She thinks gluten and casein are bad for everyone, but that autistic people especially just can’t digest that stuff properly. And to be fair, I do have my share of being Gastrointestinally Interesting.

    Now, when it’s a therapist, it’s kind of a different deal, because you’re paying that person to give you advice. And if she was constantly harping on it instead of bringing it up every once in a while, I’d have to consider changing shrinks. GF/CF will not make me NT, and anyone who thinks it will change a person’s neurological wiring really has no clue about what it’s supposed to be for. Fortunately, she doesn’t seem to buy into that part of it.

    I don’t know why, but either nobody gives me drive-by advice anymore, or I’ve just filtered all of it out and don’t remember. It probably helps that I telecommute.
    .-= Meowser´s last blog ..First Draft of My Letter to Sen. Wyden =-.

  19. My mother was horrible about that. Everything that was wrong with me was because of something I did, everything that I did was going to cause something horrible to go wrong with me at some future date. Of course, she did everything “right” and died of the Mongol Horde of cancer at the age of only 62, so . . . yeah. I miss her, I loved her, but she drove me batshit.

    I get unsolicited advice every single fucking time I mention in my journal that I have/have had problems with my period. It has NEVER, NOT ONCE been something I had not previously heard of. I am better educated about this shit than a lot of GP doctors at this point. Telling me “There’s this amazing thing called an ablation!” is . . . arrrgh. THANK YOU I KNOW I WOULD LOVE TO HAVE ONE. COME PAY FOR IT. Seriously. If I had twenty bucks for every time I heard that one. . . .

    I get a lot of it for the bipolar thing, too, which is, in its way, even more irritating, because most of the folks offering their menstrual problem solving skills to me are women who DO have problems like that and are coming from a place of complete and total sympathy. People telling me how to manage my lycanthropy are not usually coming from a background of mental illness.

    I try to take it graciously, I do. I don’t bite people for meaning well. I don’t hate most of these people, I am not angry with them, just at the fact that people do this all the time. One incident doesn’t fuck with me, but the fifteenth time, it’s annoying, and so on until you actually start grinding your teeth when you hear “I heard about this thing. . . .”

    It’s a bad habit, and I wish people would stop. I preventively put up a disclaimer either before or after saying that I am not looking for advice, I have it covered.

    Now people STILL DO IT, but it happens maybe a third as often. And every once in a while, oh beautiful thing, a friend comes in and says “Did you read her postscript? Knock it off, FFS.” and I can feel less annoyed AND not guilty for saying “STOP. IT. NOW.”

    What is also aggravating, and I know that I am probably seeming like a bitch here, is people who, when I make a disclaimer that says I don’t want advice, immediately jump in and say “LOLNAAMAH DID YOU TRY CROCODILE DUNG YET LOL?!!?!” because they are trying to be funny. And . . . it’s not really funny. I mean, maybe one in fifteen or twenty times is the person a) ACTUALLY funny and b) commenting while I am in a humorous mood about that particular thing. It’s possible, but on the whole, it’s something I would rather not deal with.

    In-person interactions . . . are both easier and harder to deal with. It’s a lot easier to change the subject in person than online, or it is for me. On the other hand, one doesn’t have a choice about when and how an in-person interaction takes place most of the time, and on the internet, you can wait to respond until you are no longer snarling.

    A link I very much appreciated on the subject, written for people who chronically give this kind of advice:

    On the flip side, I’m still really able-bodied and all, so I imagine I can be a pest about stuff I don’t have much/any experience with. I do tend to want to know what people have tried to fix their problems, but that’s only ever to friends, and is coming from a place of me wanting to keep informed about what’s going on with my friends. I try not to offer unsolicited advice. I do still do it, but it’s like, the last three times I have done that, it’s been when someone I knew was diagnosed with a condition I HAVE, and I basically just said “Here’s what to expect short-term, here’s what I wish people had told me, here’s what you need to make sure they work with you on so you can keep on top of it, here’s my reassurance that it will be okay, I’ve been there. I am here for support, or for advice if you want more.”

    And while I do sometimes feel like I shouldn’t say that stuff, I don’t do it to people I don’t know, and I can’t help but feel that’s a totally different thing than a complete fricking stranger saying “Have you tried hot chicken poop compresses for your missing head? Because that completely cured my aunt’s headlessness! We’ve saved a fortune in pumpkins!”

    Even the annoying/well-meaning comments on my blog are in a different class, because those are folks who read me and feel like they “know” me. And I understand that. They care, they want to help. Random people? Arrrgh. I take it well, like llevinso said, but not everyone wants to put up with this, and not everyone SHOULD. Whether it bothers me badly or not, other folks don’t need to be dealing with that.

  20. Thanks for this post, it is very good.

    I get tired of people trying to diagnose me. I go to doctors for that, I don’t need to hear it from random people.

  21. Yes, so true! And all that “well meaning” advice comes with the word “just”, doesn’t it? As in, “If you just tried yoga!” or “If you just drank this miracle shake!”

    It emplies not only that we aren’t trying to “get better”, but that it’s a quick fix solution. No. It reallly isn’t.
    .-= PharaohKatt´s last blog ..The Spoon Theory: How Does It Affect You? =-.

  22. Yesterday – and it happens every time I’m around new people.

    I agree with what you describe about infantilization. I also think there is a component of personal discomfort with vulnerability and mortality. Some people are so uncomfortable with disability or illness, they can’t tolerate the idea that it exists. They have to go all out to eradicate it. That way they don’t have to see it or know it’s around. They want to be the hero who saves me. I’d be happy not to be in pain anymore but honestly, it’s been 20 years and I’m very tired of earnest advice so unless a person has a magic wand they can totally SFTU. Usually I deflect it by saying let’s not talk about medical stuff right now. Other times I explain that I’m tired of advice. What I don’t want to do is then explain to that random person exactly what I have and haven’t tried over the last 20 years! And they always want to know.
    .-= Liz´s last blog ..ADAPT in Atlanta kicking ass, taking names =-.

  23. @PharoahKatt: You’re so right with the word “just.” That’s when I really get upset. It’s like there is some magical cure that I “just” need to try and everything will be all better! Ta da!

    That’s kind of what I was talking about above. I personally don’t mind advice here and there (although I know others are different than me in that respect), but when it’s presented as an absolute = irritating. Especially then if I say that I have “just” tried whatever they’re talking about and it didn’t work for me and they assume I didn’t do it right or I’m lying. Gee, thanks.

  24. I’m able-bodied, and I think I’ve been pretty good about avoiding this sin. I do feel, when I meet someone who’s disabled, like asking “Is there anything I can do to help?” but I realize that that could quickly become fingernails on a chalkboard. So I usually don’t do anything beyond giving up my seat on public transit. I don’t really know how to be helpful without implying that the person is helpless.

  25. Just… love, for you and for the commenters. I absolutely detest when people do that. When it’s my friends who also have disabilities, especially the ones I have, fine. The ones who keep an eye out for interesting articles, that’s fine too. But a TAB person… no. Too much of a power differential, even if it’s just that they don’t have to plan out when they go to the bathroom because it’s up a flight of stairs (and stairs are tricky! don’t let them get you! 😛 ). Heh. “Just.” Come to think of it, that’s a pretty big thing. Or that they don’t have to give themselves a pep talk just to walk out to the kitchen to get some food for themselves or their whiny, cranky terrible two-year-old. (He’s always whiny and cranky when it comes to food. Otherwise, he’s usually quite delightful.)

    I don’t get the advice that often, as fibro and RA are “invisible” except when I use my cane, but it’s happened, and I’m one of those people who responds to orders/advice by wanting to do the exact opposite.

  26. Late to the party, but it happens all the time on my blog, since I’m pretty honest about my physical state. On my blog it’s easy enough to ignore, but man, I hate it in person, because people get so *offended* when I say “no thanks”! It’s amazing – and rude.

    And awkward. Really? Ten years of mysterious “nerve damage”, and you have a suggestion I haven’t heard of? I no longer try every new drug that “might work”, because of the damage various drugs have done to my body over the years without helping. I like my opiates, and I’m not an addict, thank you. People are always amazed that I don’t want to get off the drugs RITE NAO. If the pain went away, sure, I’d love to be drug-free, but until that glorious (and probably never happening) day, I’ll stick with the one drug that I know works with the least side effects.
    .-= attack_laurel´s last blog ..Trigger Warning-type Post =-.

  27. Thank you for this post! And the classism in it too! I just love when people suggest treatments I have wanted for a couple years but cannot afford….

  28. (To be clear, I mean the classism in the suggestions, not the post. Sorry if that was unclear.)

  29. I used to give advice like that sometimes, but as more and more people pulled that crap with my ADD and especially my IBS once it worsened enough to impact my diet severely, I got enough perspective to realize how intensely annoying it was.

    So now I just express support and sympathy.
    .-= recursiveparadox´s last blog ..On Marriage: Impaled? Have A Bandage! =-.

  30. This is something I’ve been struggling with for a little while now. Whether I like or not, I’ve been there, done that. But over the last year or two I’ve started becoming acutely aware of such advice that I receive even from my own mother, who has been fighting with the medical community with me in order to try to determine just what exactly is going on with my body and mind. And now that we have a (vague) idea… she’s been giving me suggestions of reiki, vitamin supplements and diets that oftentimes I’m already on. I know she means well, but I do my research too. I have to. And many times the clinical information I find either discounts or directly opposes what she finds. No mom, I don’t think reiki will help a condition that’s shown to be related to the central nervous system.

    But part of the frustration is not just the advice they give, but the fact that it’s so difficult to turn it down. Otherwise you’ll hurt their feelings and well, they “mean well”. So your concern about your own conditions is then silenced by their feelings on the matter, all for advice you never asked for.

    I still struggle with giving that sort of advice. But I’m trying, and I’m doing better at it. At least I hope I am.

  31. Even I can’t resist the temptation to give advice on occasion, although I try to question myself and temper it: I ask if it’s really something someone might not have known about, or how beneficial it might be. I also try to ask myself to imagine their experience for a moment to determine whether or not my information really even applies. It’s hard to strike a balance sometimes, which is why I try to preface advice which I think is valuable enough to offer with “this works for me,” or “you may already know this but I wasn’t sure so I thought I would mention it.”

    My general rule of thumb, though, is to only give advice when it is specifically requested, or when someone appears to be struggling and is not explicitly asking for help, but might welcome suggestions. Someone who says “this new medication is giving me awful side effects,” for example, is not asking for advice. Someone who says “hey, does anyone have experience with side effects from [medication]?” is asking for advice.

    I also have to admit that I tend to take advice from fellow PWDs more gracefully, especially if they share my disability, because I know that they are speaking from experience and a place of personal connection, rather than just taking an opportunity to lecture me. Even if I already know/have tried what they are talking about, I appreciate it because it’s a form of solidarity.

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