Blog Against Disablism Day: What not to say to an amputee
What not to say to a woman who’s about to have her leg amputated:
-“Well at least you’ll only have to shave one leg now!”
What not to do when you see someone with a prosthetic leg approaching a doorway:
-Run past her and reach in front of her to hold the door open for her.
What not to say to an amputee who walks with a limp:
-“Recently I saw this TV special about a one-legged marathon runner. You know, you should ask your doctor about getting a prosthetic leg like this runner’s, then you could walk better.”
It’s hard for me, sometimes, that almost everywhere I go, my body is being noticed because I walk “differently.” Like today, as I was passing out papers to my students and navigating the stairs of the large lecture hall it was awkward to feel everyone’s eyes on me—the ungainly way that I step up, steady myself, etc. This is the first time I’ve been assigned to teach in a lecture hall with theater-style seating. I haven’t yet decided if I’ll specifically ask, next time, for a flat floor in my classroom. Because I like to move around in all the areas of the room—even standing at the back to involve the slackers with their earbuds and hoodies sitting near the door. And I can’t do that this quarter and I miss it. I don’t feel as though I’m in control of my classroom. But I’m also reticent to admit to whoever assigns classrooms that I need a particular accommodation. I’m fairly proud of all I can do on my own.
Though I use many “accommodations” on a daily basis, such as parking in disabled spots, riding a modified bicycle, using curb cuts and ramps and restroom grab bars, I feel that most of the ways I modify my life don’t require me going out of my way to ask for them, primarily because many of these are the result of ADA legislation and the privilege I have of spending most of my time on an American college campus with proactive policies about accommodation.
So I began this entry with a few of the odd things that have happened to me over the years. Yes, I can’t tell you how many people have pointed out the one-leg shaving bonus for me. Sheesh. It makes me wonder why, if shaving is such an onerous task, that more women don’t opt for having their legs removed?? Or if this is meant as humor, why does it seem so un-funny to me? And as far as people and the way they open doors and offer to carry my groceries and such…Yes, it happens and I’ll admit to (just a few times) reaching out and opening the _other_ side of a double door when someone has made a huge display of opening a door for me. (Wow, I am so capable of opening my own doors, having mastered that skill as a toddler….) And as for the “Olympic amputee athlete” stories, well I realize such stories are well-intentioned, but the bottom line is that even Olympic-worthy transfemoral amputees have uneven gait. It’s because it’s impossible to mechanically duplicate the magic of a flesh and bone knee. I work out at the gym several times/week, I swim, I bike, I’m an active 30-something gal. Just because I walk differently doesn’t mean that I do so out of ignorance or lack of trying. It’s just that it takes approximately 80% more energy for me to take a step than it does for most of you. And, honestly, just because I walk differently doesn’t mean that I walk wrong or I need “fixing.”
You may be thinking to yourself that I’m being too critical of the good-intentions of the people who say such things as I’ve described above. Or you may be reflecting on how awkward you feel when you encounter someone with a disability and you’re worried that you’ll say something offensive. Yes, I agree that dealing with people with physical differences takes some finesse—one has to worry about not giving offense while balancing the desire to ‘help’ the person with the physical challenge. My suggestion is that you make sure, when in such situations, that you aren’t collapsing the whole of the person into their disability. I am much more than an amputee. I don’t like it when my disability eclipses all of the other facets of my self. I don’t like it when all people notice about me is that I walk differently or that I have a metal leg. I don’t like it when strangers presume to give me advice, or tell me that I’m “inspiring”, or start telling me stories of everyone they’ve known with a fake leg. Just like I won’t ask you about your varicose veins or knobby knees or how long it takes you to shave your two legs, I expect that you’ll respect the privacy of my body and won’t point out the differences. Because if I need your help or advice I’ll ask for it.
I realize that many of you may have experiences with disability and have very different perspectives on this topic than what I’ve expressed here. Please chime in with your stories and experiences. I can only speak for myself, and not for others who may experience disablism very differently than I do.
A list of more bloggers speaking out against disablism today.
I am much more than an amputee. I don’t like it when my disability eclipses all of the other facets of my self.
OK, can you help me think through something? While I can totally understand not wanting to be defined by a disability (I run into this with chronic health issues…sometimes I feel I am defined by my illness and how it may limit me rather than what I am as a person — unsolicited advice, a focus on the health rather than my life in general, etc.), I’m a bit confused at how someone — a stranger opening a door, for example — could be seen as eclipsing other facets of your self simply by doing something that, in their limited view and understanding, might be a kind gesture. I will open the door for a mom pushing a stroller, or a man with full arms, or an elderly person with a cane — basicaly anyone who looks like they might benefit from some help. Do I mean to say that they don’t know how to open a door? No, it is just a way to say I’m trying to be aware of people around me. I feel a bit like I’d have to read minds to know that for someone who is disabled, this might be offensive. I’d love to be able to know the other facets of your person, but as a stranger, that isn’t possible. I really WANT to be sensitive to others’ sensitivities, but can you see how your frustration at something like that might be posing a bit of a challenge for people?
I totally understand, though, that unsolicited advice and conversational focus on a disability is tacky at best and probably more often just flat out offensive.
Comment by m&m — May 2, 2007 @ 12:45 am
I could be waaaaaaay off-base and if I am, I trust Jana will tell me so, but I think the door thing is when people are so obvious about it. There’s a difference between happening to reach a door first and holding it open for whoever is behind you, and racing past someone and then reaching around her/him to hold the door open. The implication with the first is: I got here first and I can’t let the door slam on your face. The implication with the second is: You are helpless and can’t do this on your own.
I also think there’s a difference between an amputee and a mother pushing a pram or an elderly person walking with a walking frame. Amputees are usually used to doing things on their own. Elderly people with walking frames are sometimes (not always but sometimes) physically incapable of doing the multiple steps it takes to open a spring-loaded door fast enough to get in through the door before it shuts. A mother with a pram is in a situation that is not normal for her. She may or may not know what she’s doing.
Comment by Quimby — May 2, 2007 @ 4:18 am
Quimby,
Those are (lame) distinctions without a difference. I just don’t buy it that the difference between various handicaps, whatever the circumstances, is being “used to doing things on their own” or not.
I’m certain a mother with a stroller knows exactly what she’s doing after about 16 seconds of practice. But when, just to take the situation in Vienna as an example, she has to lift the silly thing up four steps into a narrow doorway to get into the tram, knowing what she’s doing involves asking the nearest pair of hands for five seconds of help.
I plan on being fairly unrepentant in this regard. The next time I see people who might benefit from a helping hand, I’m going to look past whatever is ailing them and help ‘em out. If I’m wrong and no help was needed, I will dutifully turn red, mumble an apology and shamble off, but I’m not going to preempt myself on the basis of non-existent mind reading capabilities.
Comment by Peter LLC — May 2, 2007 @ 5:24 am
I’ve thought a bit about the subject of feeling uncomfortable around people with disabilities of any kind. In analyzing myself when I feel uncomfortable, I think it’s because I don’t feel like I can ask questions or discuss it. Ignorance is unease in my case. If I could discuss a disability when I first get to know someone, learn what that person can and can’t do and what they want or do not want as far as help goes, I could easily get over my discomfort, adjust my behavior accordingly and move on with the relationship. Instead, I feel that asking such questions will only offend the person.
It’s a sort of lose/lose situation. Either I ask and offend the person by seeming to equate them with their disability, or I don’t ask and offend them with my awkward and ignorant attempts to adjust my behavior. How does one reconcile that? Is it even possible?
Comment by SilverRain — May 2, 2007 @ 8:16 am
interesting post jana. thanks for making us aware of blog against disableism day. i’ve long felt that the courtesy of door-opening should come back in style. it’s a civility and regard that has by and large been lost in our society. even those without any physical disabilities can benefit from the kind gesture of acknowledging “hey, there’s another human being in this space that i could serve briefly”, and to ignore another’s presence is a very isolating and insolating way to live.
ymmv, but i view it much like making the effort to smile at someone with genuine kindness. so i’ll keep opening doors, smiling, and lending a hand to humanity…because it’s never been about their disability or lack thereof. if that’s what they’re thinking, then they’re projecting motives on me. like others have mentioned, i can’t read the minds of others to know if they’re in the mood to be smiled at or receive any other kindness. to be offended by such a gesture, whether one has a disability or not, smacks of curmudgeonness, and demonstrates that they, not i, have an issue that needs consideration.
i try to give others the benefit of the doubt in my life, and i honestly can’t remember the last time i was offended…because taking offense is a choice and i choose not to be. most people who offend us didn’t intend to, and opening a door or trying to make small talk are perhaps awkward for some, but for the most part it’s done with good intentions.
Comment by blue — May 2, 2007 @ 8:24 am
Quimby’s right that it’s the dramatic show of racing ahead of me to open the door that’s weird. I wouldn’t say that its necessarily offensive, it’s just uncalled for, IMO. And if you’re ever in a position where you think someone might need help, the best strategy is to just ask, something as simple as “Do you need a hand with that door?” or whatever. This allows the recipient the opportunity to decide if they want your help.
Comment by JanaR — May 2, 2007 @ 8:24 am
Silver Rain wrote:
Why do you need to discuss this when you first meet someone who has a disability? Can you spend some time just getting to know them as a person before you discuss any limitations that they might have? Why can’t you move on with a relationship until you’ve discussed this?
I’m not trying to be combative with my questions, I just want you to realize that, IMO, there’s no reason to make a discussion of a person’s disability to be the first thing you need to know about a new acquaintance.
Comment by JanaR — May 2, 2007 @ 8:45 am
appreciate your post, Jana.
I have a child with several neurological and learning quirks and disorders. Invisible disabiltiy has a diferent set of benefits and negatives.
Rather than everybody seeing obvious physical differences and helping or wrongly assuming your needs, people look at him and think he must be healthy and normal. So when his behavior says otherwise, they think he’s just “bad” somehow (wild, ignoring you, disobeying). when he needs accommodation, or I need extra support, I have to first convince people his needs are as real as if the disability were visible and not hidden in his brain.
Comment by cchrissyy — May 2, 2007 @ 9:29 am
so, what not to say:
if you see a 5 year old screaming on the ground and slapping himself, don’t say “oh my girl had tantrums all the time when she was 2, I know how it is”. Don’t offer a parenting book.
If your friend’s preschooler has never slept through the night and suffers frequent nightmares and panic attacks, the methods that worked on your infant probably aren’t relevant. Besides, they probably tried them long ago but this issue was too deep for normal techniques to touch.
If a parent tells you the child can’t hear or see well, don’t reply that they “seem fine to you”. Hours of dr’s appointments have documented the issue. do you doubt them, and the parents’ effort? would you deny them their answers? Are you refusing to speak a bit simpler and clearer?
In short, don’t assume anything you did with your normal kids or heard from your sister’s-neighbor’s-niece is relevant, or that the common methods haven’t already been tried and failed.
Also, “he seems fine to me” isn’t a compliment! To me it sounds like “I don’t believe you” or “it can’t be so bad” and immediately discounts the enormous struggle of our daily life.
Comment by cchrissyy — May 2, 2007 @ 9:43 am
Twords the classroom accomodations, is there an end-of-term review with the head of your department of any sort? It wouldn’t hurt at all to casually mention, “I’m accustomed to controlling my classrom in [this fashion] and the inclined floor presented a hinderence.” I understand why you wouldn’t want people to make special exceptions for you, but there is no shame in making others aware of your needs. You don’t have to insist on never teaching in an inclined room ever again, but make sure the decision makers have all the information they need when assigning rooms.
Comment by Janell the Great — May 2, 2007 @ 9:55 am
Are they questions or attacks? I thought they were honest questions until your second paragraph, so I’ll answer them in that way.
I prefer to discuss it because some disabilities have certain needs and requirements while others don’t. Some people with disabilities get offended at things that others don’t. It is nice to know what territory is okay and which is a mine field. A disability is a disability, which means whether it is obvious or not, usually adjustments have to be made. I would prefer to make these adjustments and move on, rather than being tense and worried that I will inadvertently step on toes. That applies to more than just disabilities. Part of getting to know a person is getting to know their likes/dislikes and pet peeves. If there is anything major, I prefer to know about it early in the relationship also.
Also, I never said I had to learn these things before moving on in a relationship, just that it would make it easier. If people with disabilities discussed them frankly, they wouldn’t be so mysterious and hence uncomfortable to those who don’t know them well.
Comment by SilverRain — May 2, 2007 @ 10:46 am
Wow, I feel like a dufus. Seems best for me to keep my mouth shut and hands behind my back until I can read minds. I really don’t like hurting people, and I guess I have a propensity for sticking my foot in my mouth. But thanks for pointing it out so I won’t offend in the future.
Comment by Sorry — May 2, 2007 @ 10:55 am
SilverRain wrote:
But I think what I’m saying is that a disability isn’t just a disability. There’s a person who has that disability. And what you perceive as a disability may or may not come with any limitations/adjustments.
I am totally forthcoming and honest about discussing my amputation. I’ll even go into grisly details for anyone who’d like them. I freely show my prosthesis to any and all who are interested (I love, in particular, inviting children to touch it, as they seem to get a thrill out of feeling what a ‘robot knee’ is like). This doesn’t “step on my toes” at all. But open-ness about my disability isn’t at all the same as having other people assume that I need help or accommodations. Perhaps I wasn’t clear enough about that distinction in my initial post.
Comment by JanaR — May 2, 2007 @ 11:26 am
cchrissyy:
Thank you for sharing your experiences as the mother of a child with a disability. Your insights are very important to this conversation.
Have their been moments when someone, even a stranger, has said something insightful or helpful? Have their been people in your ward who have been helpful to you?
Comment by JanaR — May 2, 2007 @ 11:31 am
My wife was recently confined to a wheelchair. One of the most obvious (and surprising) differences I have noticed is that the wheelchair also serves the purpose of making her invisible. People talk to me instead of to her. The biggest surprise was not the people who hurried to either open or hold open a door for her–it was the people who hurried ahead of us so the wouldn’t have to hold the door open. I have been shocked at the number of times people have deliberately shut a door on us as we approached it.
Comment by CS Eric — May 2, 2007 @ 11:56 am
What I’m saying doesn’t violate the personhood of anyone with a disability. If anything, it is giving advice on how to help others recognize that personhood rather than being limited to seeing only the disability.
And there is no way for someone else to know that unless the person with that disability tells them. Discomfort comes not from refusing to see beyond the disability but from not understanding how to deal with it. Once someone understands, the discomfort evaporates.
I guess I’m having difficulty seeing how someone wanting to help you or trying to be kind is so offensive.
Comment by SilverRain — May 2, 2007 @ 12:06 pm
There’s a question. The biggest difficulty in communicating with a person in a wheelchair is the large difference in eye-level. I try to find a chair to even out the eye-level and usually just end up standing on my knees or sitting on the ground. Would this be considered offensive to those people?
Several days ago I was leaving the library on a day when there were very few people around me. I noticed an elder gentleman about five people behind me who was also headed towards the exit. Despite the difference in distance, I waited and held the door open for him. He obviously was a person who could manage doors on his own and his hands weren’t full. I chose to hold the door simply because I was in the position to do so. Would this be considered offensive to some people?
I dislike it when a date _insists_ on opening every single door - especially those dratted entrances requiring two door openings - and by “insits” I mean to say that he complains when I open the door and runs ahead of me to open each door. I’m equally capable of opening and holding a door. Why can’t we just take turns?
I suppose the issue comes down to the intent of the door-opener. Is it for show? Is it because the person thinks your inferior? Is it because the person finds it convenient, a service, or a sign of respect? I guess as I can’t judge a person’s intent I ought to just accept the gesture in the best light.
A pox on those people who avoid opening the door for CS Eric’s mother.
Comment by Janell the Great — May 2, 2007 @ 12:17 pm
Sigh. I forgot to run the spell checker. I’m sorry for my sloppiness.
Comment by Janell the Great — May 2, 2007 @ 12:19 pm
For those who might be interested in more of my writings about life with a disability, you can take a look at these posts on my soloblog.
Comment by JanaR — May 2, 2007 @ 12:49 pm
Jana, you should definitely tell Carol. No big deal.
SilverRain, I think I know what you’re trying to say. I do think that the difficulty with amputees is that they have a very visible disability. And, having any disability/illness doesn’t necessarily mean that you want to be treated any differently. Sometimes you HAVE to be treated differently (e.g. Sorry Matt, can’t go to your party. Have to have chemo…) but when possible, it seems like it would sure would be nice to be treated like everyone else (nice tie in with the feminist angle here).
I don’t think that disabled people have any particular responsibility to educate us about their challenges or that they need to go into any specifics of whatever accident/illness/birth condition caused ________. Especially to people that they don’t know that well–that just seems like an unrealistic expectation. Some people want a big fuss, some people don’t. What’s important is that Jana is reminding us is that if you’re just noticing the disability and not the person, then yeah, that’s a problem. That being said, I think erring on the side of empathy is always appropriate. But that’s just me.
Jana wrote an astonishingly beautiful piece that garnered some fancy prize in Sunstone a few years ago. If you’re lucky, maybe she’ll provide a link to that.
Comment by Lupita — May 2, 2007 @ 2:14 pm
Jana, while the idiotic shaving comments must be profoundly difficult to abide, I’m curious about how you’ve responded (either verbally or internally) to comments directed to you about your anticipation of the Resurrection. Maybe you haven’t had to deal with well-intentioned queries…I hope this isn’t too weird of a question for you. I don’t mean it to be.
Comment by Lupita — May 2, 2007 @ 2:23 pm
I often don’t know what a particular person with an obvious disability is capable of doing easily, capable of doing with difficulty and might like some help, or incapable of doing and really needs help.
“Just ask” is probably good advice in that regard. But if it is something the person is capable of doing easily, aren’t they going to be offended that I even thought I had to ask? Aren’t they going to go home and write on their blog, “Sheesh, this woman I ran into today asked me if I needed help opening a door, which I learned how to do when I was two. I’m missing one leg, not both arms. Geez.”
Or if it’s a situation where I really do need to take action, aren’t they going to be offended that I had to ask whether help was needed when it was so obviously (to them) needed? Aren’t they going to go home and write on their blog, “Sheesh, this woman saw me in my wheelchair and saw there was a curb cut right in front of her, and then asked me if she should move so I could use the curb cut. I mean, duh, it’s not like my wheelchair has the off-road package.”
Maybe my next step in being more sensitive to disablism is to just go ahead and accept that someone might scold me for helping them or offering to help. (That has happened.) They may be having a bad day and they may expect a greater level of awareness from me than I actually have, but that shouldn’t stop me from doing, or offering to do, what I can.
Comment by Beijing — May 2, 2007 @ 2:50 pm
Lupita - I think being an amputee is unimaginable. For me, I think it would be utterly difficult, feeling a part of me missing. I think that would make me feel extra vulnerable to others’ behavior regarding that loss. There would be an ache there that not only no one can fill or fix, but that screams out “different” to everyone around me. I don’t know, not having had anything amputated yet. I can see how it would be difficult and raw.
But, I also feel that they do have a responsibility to educate the people around them. No one else can educate. Either that, or they are responsible to look at others’ ignorance with a similar degree of understanding and compassion that they wish others would have. I don’t think there is any difference between trying to get to understand someone with a disability and someone without except that there some adjustment in behavior might be necessary.
I’m not trying to pick on the disabled. I’m not trying to demean their incredibly difficult circumstances. I am afraid to know that some day, I’ll be permanently disabled one way or another. But I also wish I could feel more comfortable around the disabled. I wish I could feel free to learn how to assist or not assist them without being judged and condemned.
Comment by SilverRain — May 2, 2007 @ 3:39 pm
Lupita:
My article “Pose” is in the March 2004 issue of Sunstone Magazine. It’s not available via the web, but you can listen to an mp3 of me reading this story from this link on my blog.
Those who want to read more about the story of my amputation can take a look at this New Era article.
As for the Resurrection:
I find this comes up in conversation with LDS in two ways–
1) People discussing how our bodies must be kept “whole” when we are buried so we can be appropriately resurrected. My reply: hogwash.
2) People expressing that I must be particularly grateful for the promise that I will have two legs when I am resurrected. My reply: this thought brought me great comfort when I was a recent amputee. Now I don’t find it so necessary to look forward to the day that I have two legs. I suspect that this change in attitude is partially because I’m so used to doing things as a monoped and I no longer yearn to be bipedal. It’s also partially due to my desire to live in the present rather than looking forward to some future day when all will be ‘perfect.’
Beijing:
I think the best step is not to help unless the person asks for it. Seriously. If there are those of you reading this who have personal experience with disability, I’d like to know if you agree with me.
I’ve had many, many people do spontaneous acts of kindness for me through the years and I can’t think of a single time that I’ve scolded them. But just for a moment can you imagine how wearying it would be to go day after day with crowds parting in front of you, people taking stacks of books from your arms to “carry them for you”, strangers touching your body in a patronizing way (even kindly pats on the shoulder), passers-by smiling with pity as they open doors, acquaintances assuming that you’re not capable of taking care of your own children, that you can’t drive a car, can’t have fun, or aren’t able to care for your home? Can you imagine how tiresome this is? And add to this the fact that anytime you wear cropped pants or shorts or a skirt or a swimsuit (which for me is like every day), you have to deal with stares. And I don’t mean little sideways glances, I mean jaw-dropping, blocking traffic-types of stares. [Note: Through the years I’ve experimented with different ways of disguising my disability so my body doesn’t appear to be so different when I move through public spaces. Right now I’m opting for the robotic look because it seems more true to who I am.]
Speaking again of ways to treat people with disabilities: can you imagine how frustrating it is when normate people idle their cars in disabled parking spaces (assuming no one needs to use them), use disabled restroom stalls, block curb cuts or wheelchair spaces in theaters & restaurants? I would like to see people honoring the types of access mandated by law for accessibility rather than opening doors for me. Really.
Comment by JanaR — May 2, 2007 @ 3:40 pm
I can only chime in with “Yes, yes, yes!” especially — but not only — with regard to the holding the door open thing. And I’m not talking about not letting a door you pass through smack the person behind you in the face. I’m talking about turning my life into theater to make yourself feel good.
Invariably, some guy — and it is almost always a guy — will run ahead, open the door, and then we have this lovely interval in which I will implore him not to do that, to please just let the door go and go on about his business, but he will ignore me, smiling, and then he will stand and watch me while I slowly, somewhat lurchingly walk toward him. And during this interval, I’m supposed to do what exactly? Smile at him like a Miss America contestant? Look grateful?
Ain’t gonna happen, buddy. But I have been known to pivot on the last step before the door and just walk away without a word, every bit as slowly.
Comment by Sara — May 2, 2007 @ 4:22 pm
I am not equating what follows with your experience, but just giving you a sense of what I have experienced, since you asked me to imagine. For a year, I put up with jaw-dropping stares every time I went out in public. Crowds parted. Everyone on the street or in the restaurant turned to stare, then turned back and murmured to whoever they were with, then looked again and pointed and laughed. Everyone wanted to ask me the same old questions and give me the same old advice. People constantly assumed I needed something–directions, a map, a ride, a translator or language teacher or conversation partner. Whenever I was unable to express my needs or desires, the response was either a pitying look, or more often, a throwing up of the hands in frustration and then ignoring my continued attempts to express myself. People in the area of Beijing I was in were unaccustomed to seeing tall, ghastly pale foreigners in their neighborhood, living amongst them, trying to speak their language. They were as nice and accommodating as I could reasonably expect them to be, but it wasn’t long at all before I found their attempts to deal with me extremely tiresome. I am grateful that it was just a matter of flying home from China in order to get that treatment to end.
Comment by Beijing — May 2, 2007 @ 4:45 pm
this question is somewhat off topic, but your comment above made me wonder if i’ve had my head in the sand my whole life about this:
i’ve never thought of stalls that were large enough to accomodate a wheelchair as reserved for use only by those who are in wheelchairs, but just recently for the first time i had a woman give me a dirty look for using one when it was my turn in line. i mean, sure, if a wheelchair-bound person comes into the restroom, they need to use that stall…and i’d let them go in front of me to do so…but if i go into a bathroom with a line of people waiting to use the toilet, seems like common sense to use all available stalls. i’ve never thought of a handicap-accessable stall in the same way that i view handicap-reserved parking spaces. in fact, as a mom with a stroller and toddler in tow, the big stall was my sanity and the only way i could reasonably use a public bathroom. when i became a stroller-pushing mom, i had my first insight into just how un-accessible much of the world is to wheeled access, and how much more effort it can take to go out of your way to use the curb cuts and so forth. no elevator? bummer! it’s a challenge for anyone, disability or not, who is pushing a wheeled object.
side-issue: how do you feel about people who drive cars with the handicap sticker on them parking in handicaped spaces who aren’t handicapped? (a family member may be, which is why the got the sticker, but that family member isn’t with them at the time).
Comment by blue — May 2, 2007 @ 5:16 pm
“Have their been moments when someone, even a stranger, has said something insightful or helpful? Have their been people in your ward who have been helpful to you?”
Stranger offers to help are usually themselves destructive- by the time the situation looks like we need help, their presence or slightest sound actually *worsens* things for him, so the most helpful thing they can do is get away, and not make me say it twice.
But I recall a stranger once came up and said “can I help” but something in her face or tone told me she was special, she actually knew what was up and had the skills to help.
I turned her down anyway, but later talked with her and yes, she had about 2 decades hands-on experience. She gave me her card and contact info for 2 very relevant organizations. I know that was an inspired meeting though I haven’t followed up yet.
As to insight, I have one close friend in the ward whose support and advice is invaluable (waving! hi!) but her help and insight comes directly from wisdom gained in personal on-the-ground experience, much more than I have.
I don’t want people with an incomplete picture presuming that they have “insight” for me. If you seen earnest, I’ll nicely dismiss it. If you arogantly think me and the speciailists are wrong and you know “what he really needs”, I’ll be angry.
Also, my VT should be sainted for her endless willingness to babysit my healthy kids while I take him to appointments. She doesn’t ask what the appt is or why he has so many. Please be like her- offer service without prying!
We could really use more relief like this- you don’t have to help me tackle the hard issues, but you could take the easier kiddo over to play, or babysit my sleeping house so we parents can go to dinner.
General people in the ward, (like our friends and neighbors) only know the pieces of the story that are useful to share. If telling somebody doesn’t help me or my son, it doesn’t get told. I think we’ve had a decent, level of accommodation and understanding in the primary and ward leadership. Not fabulous, but not bad at all.
Comment by cchrissyy — May 2, 2007 @ 5:39 pm
A note on handicapped stalls and parking spots: just remember that you can’t see all disabilities which may require their use. I’ve had people shoot me nasty looks and have had to really hold onto my temper so i wouldn’t yet, “hey, I’m hooking up a catheter in here! Want to try THAT in a micro stall?” I once threatened to pee on a store’s floor when they wanted to ignore the little card which is supposed to give me legal access to bathrooms in places of business.
Comment by Janet — May 2, 2007 @ 6:14 pm
JanaR–I think women just really LOATHE shaving because I get the same comment all the time (I have an autoimmune thing which has eliminated almost all need for shaving before wearing shorts or donning a swimsuit). it’s always baffled me that women would find disease preferable to normal sex characteristics (which have been thwarted by gender expectation).
My great-grandfather made a huge deal out of rendering his prosthesis obvious and even funny (he did a ventriloquist growl thing to make us think it was indepedently alive and after small children). I sometimes fear my assumption that his attitude was normative and that I’m assuming people’s attitudes about their disabilities are the same just because they share the same disability. Part of what I see in SilverRain’s inquiry is a desire to figure out how to approach individuals without believing all disabled people want to be treated exactly the same.
Though the shaving comment is almost never helpful. Even if I am grateful the term “bikini wax” will always remain purely academic to me.
Comment by Janet — May 2, 2007 @ 6:22 pm
Peter - I don’t think my distinctions were lame at all. An elderly person with a walker is usually unsteady on her feet and lacks confidence in her mobility. To open a door, that person either needs to approach it backwards - which is incredibly difficult to do if you are already unsteady and lack confidence - or she needs to walk from the back of the walker to the front of the walker, open the door, and then walk to the back of the walker and walk through the door. If it’s a self-closing door, it’s almost impossible to perform this series of tasks without having the door shut on you.
I have a 9 1/2 month old daughter and I rarely use a pram, so when I use one, I’m completely useless at opening doors. I can manage, but it’s not a normal situation for me, so I don’t mind help.
On the other hand, generally speaking, there is a long recover process with amputation and as part of that, they relearn how to do anything they need to relearn. And in the case of a person missing a leg - well, how lame is it to open the door for her? She still has both of her arms.
Beijing, I’ve met foreigners who have lived in China for years, and they tell me very similiar stories. One man (who was absolutely torn up because he wanted to marry his Chinese girlfriend but he didn’t want to subject her to years of abuse because of it) said that, every day for 18 months, the same man would point and laugh at him when he stepped out of his apartment. It grew so annoying, he eventually moved just to avoid this guy.
Comment by Quimby — May 2, 2007 @ 6:27 pm
Interesting word choice–I’d never noticed that particular bit of bigotry in our language. Very clever, Quimby!
Comment by Janet — May 2, 2007 @ 8:32 pm
I’ll take the compliment, but to be honest with you, I only used that word because it’s the word Peter used.
Sometimes, just for fun, if I’m with a friend who has a disability (using a walker, in a wheelchair, whatever), I like to race ahead of her or him when we come to automatic doors and say, “Here, I’ll get the door for you!” They usually laugh and punch me at the same time.
Comment by Quimby — May 2, 2007 @ 9:04 pm
Jana,
I work as the Independent Living Specialist for Utah, and I am studying Disabilities Studies in Graduate School. The thing I hate the most is when people tell me things like “Oh, bless your heart, it takes a special person to do what you do!” What? They act like all disabilities are some sort of pity fest, and that I am somehow here to make tragic lives better. I usually then take the time to inform people that my job is more along the lines of educating the public of their own assumptions and prejudices, and not doing amazingly charitable acts. Most people with disabilities do not need charitable acts. They need access to bathrooms, buildings, parking spots, and the ability to be seen as people not as disabilities.
Thanks for this post.
Comment by maren — May 3, 2007 @ 2:50 pm
When I was a twentysomething, able-bodied, “normal-looking”, fit and damn healthy woman, people sometimes held doors open for me. Yes, they even sped up to overtake me or did that little jogging-hop away from what they were doing in order to do so.
A couple of years later, as a slightly older and significantly less healthy but still twentysomething woman with a lot of pain, balance issues and mobility problems, walking slowly and using a stick, people sometimes hold doors open for me. Same as before.
In both circumstances, I’ve always smiled and said thankyou. I like it when people are polite.
If they all stop doing it, I intend to blame you entirely.
Although I do get peeved when AB people don’t allow me to show them the same courtesies.
Comment by Mary — May 3, 2007 @ 4:26 pm
This sums up things very well IME. As a person who uses a wheelchair for 99% of all mobility, I deal with this on a daily basis. I happen to have Spina Bifida. So many people assume disability equals incapability, and I get ‘congratulated’ frequently (several times a week) for being so ‘independent’ and ’strong’. It gets old. Why shouldn’t I be expected to do everything else a ‘typical’ person does? Yes, I drive. Yes, I have a good job (I teach). Yes, I’m married. Yes, I can (and DO) have children. No, I will not explain to you how I have children (besides, I assumed that was covered in biology 101). Yes, I can take care of my own child. No, I don’t want you to carry my child for me just because you happen to be in the same room as me. Yes, I went to college. Yes, I can waterski. Yes, I do everything any other ‘normal’ person does (can I just say I hate that word!).
Doing a kindness because I’m another human being is one thing. Going out of your way to ‘help’ because you feel I cannot, or treating me any different than any other person you would run into on the street, is another thing altogether. There is absolutely no reason to approach me any differently than your neighbor down the street.
Comment by LizzyTish — May 3, 2007 @ 5:37 pm
Maren & LizzyTish:
Amen! Thank you so much for adding your voices/experiences in this conversation.
Mary:
Yes, please blame me. I’m willing to take the heat. Next time it happens, feel free to take my name in vain.
Seriously though, how about we drop the door opening conversation and talk about other ways that normate people interact with people who have disabilities? The door opening discussion, IMO, is deflecting the discussion from the larger issues at hand, which are how disabled people are perceived and objectified as they move through public space.
Let me again echo what Maren said so well:
And let me reiterate what I said earlier: it’s best to ask first before you help someone with a disability This allows the individual the opportunity to accept or decline your aid. It shows that you respect their ability to make that choice.
If you are business owner or if you have any power to make decisions about making public spaces more accessible, please do so. The ADA has been law for 17 years yet many, many places have not complied. Perhaps you don’t know if your business or workplace is compliant? Take a look at these rules (they are a bit technical, but have all the relevant info)
Comment by JanaR — May 3, 2007 @ 6:06 pm
I am often an object when in public. It’s not the people I know that aggravate me. It’s the store employee who asks my husband/friend/MIL/whoever I’m standing in proximity to what color I’d like, or which item I’m looking for, never once addressing me directly or looking me in the eye. It’s the amusement park employee referring to my friend five years my junior (who’s hanging with me for the afternoon) as my ‘chaperone’. It’s the business owner who hasn’t made their space accessible and informs me I must use the freight elevator to access desired places. It’s the architect that designs a building without thought to access for all (um, so NO, I can’t climb the 50 beautiful steps leading to the sloped entrance of the ____). It’s the professor who assumes I will drop his/her class because it’s assumed I’m unable to handle the workload. It’s the stranger who comes up behind me and starts pushing my wheelchair without even asking if they can help, or if I need help (hello…I’m not going to randomly put my hands on your back and ’steer’ you where you need to go. Don’t do it to me without asking).
If you haven’t yet, I strongly recommend reading _No Pity_ by J. Shapiro. One of the best books I’ve come across about disabled life in America. When people realize there is no difference in approaching/talking to/interacting with a person who has a disability and a person who does not have a disability, then we’ll get somewhere. Until then… I’ll continue to feel like a science experiment.
Comment by LizzyTish — May 3, 2007 @ 6:34 pm
I can understand the asking first. I like the asking first. That’s really what I was trying to say. That I don’t feel like I am allowed to ask questions, and that is what makes me uncomfortable.
Comment by SilverRain — May 3, 2007 @ 6:41 pm
SilverRain:
I think it’s also important when asking a stranger who appears disabled, not to say “Why are you disabled?” or “What happened to you?” or “Can you do x,y,or z?” A simple query if someone looks like they are in need of help (as in “Would you like help out to your car with that heavy bag of books?”) is much more appropriate.
As far as not being allowed to ask questions, it’s quite rude to pry to closely into the details of a stranger’s particular disability. I have difficulty fielding such questions simply because I often don’t have the time or patience, in a moment where I may be absorbed in my own agenda, to stop and educate someone about my body. So if someone casually asks, “What happened to your leg?” and it’s not obvious that I’m an amputee (say I’m wearing long pants) I don’t want to reply with “I’m an amputee” or “My leg was amputated because of bone cancer.” It’s just TMI. No one knows how to reply to my response and it’s just awkward all around. That’s one of the reasons I now choose to wear clothes that show my prosthesis–so it’s obvious I’m an amputee and no one has to ask those basic informational questions (though I do have to deal with lots more staring, sigh).
But if someone is an acquaintance or a friend and they want to ask me more about my leg, I’m much more open to discussion. Just like I might ask them about the place they grew up or what they studied in college, it’s part of my life story. But I don’t really want to give my life story to everyone in the grocery checkout line. The exception to this, at least for me, is dealing with children. I’m not offended by their curiosity and questions. Perhaps because they are rarely accompanied by pity. Instead there’s a kind of coolness and awe at my physical difference. I don’t know if everyone with a disability feels this same way, though.
Comment by JanaR — May 3, 2007 @ 8:44 pm
So it seems to me (at least on the surface) that you are judging people based on their looks for judging you on their looks. Do you see why I’m confused?
(As far as the questions go, I understand. I was referring more to an acquaintance level of question-asking, not a random stranger level.)
Comment by SilverRain — May 3, 2007 @ 8:54 pm
It might help if I knew what you meant by pity. Does it include any compassion, or just the condescending type?
Comment by SilverRain — May 3, 2007 @ 9:54 pm
Ditto 100%.
Comment by LizzyTish — May 3, 2007 @ 10:44 pm
Generally it means the latter. But sometimes compassions walks a thin line with pity. It drives me bonkers to hear how things must be so hard because I have to do everything sitting down. Well, since I don’t know any other way, no, it’s not hard. It’s just the way I do things. A lot of times people feel that the only ‘easy’ way to do things is the way they have always done them, and anything that deviates from the ‘normal’ way must be difficult. No…it’s just different. Just because a life doesn’t match your experience and the experience of 80% of the rest of the population doesn’t make it any harder, any more noble, or any more worthy of attention.
Comment by LizzyTish — May 3, 2007 @ 11:00 pm
This conversation is so interesting because today I saw a woman in a wheelchair getting into her car. I was chasing 3 children, so I didn’t have time to do what I wanted to do: stare. I was honestly curious at how she would manage it and part of me wanted to go ask if she needed help. But (you can all sigh with relief) I realized that with 2 children ahead of me, and one in a shopping cart, I was probably having a more difficult time than she was. I also thought about how much of a pain it is to load children, strollers, diaper bags, etc into cars and shclep everything aroudn. I think this woman is probably just as acclimated to getting in and out of her wheelchair as I am getting my kids/stuff in and out of the car.
Anyway, it’s ironic that I had this little experience today and then came in and read this post.
Also, a few years ago I went to a disability summit in Arizona and we had local legislator come in to talk to us. At one point he mentioned people who “suffer from disabilities” and the woman leading the group stopped him. She said, “We don’t suffer from disabilities, but we have them.” It was an interesting distinction that I hadn’t picked up on before.
Thanks for the comments. I certainly need more awareness on this issue.
Comment by Jessawhy — May 4, 2007 @ 12:21 am
LizzyTish,
Last year I did a research paper on pregnancy with disability. I did it because I was pregnant, and decided to explore it. I found very little written about it, very little. But what I found more frustrating is that I did personal interviews with ob/gyn’s, and some said, well, people in wheelchairs can’t have babies. Or, I can’t see them, I don’t have a way to get them on the table. I talked to a woman who could not find a doctor who could see her, and ended up with no prenatal care, and having the baby in the emergency room. It is really very upsetting. I find it so silly when people say “How would you have children?” or think that you are so different and amazing for living your life. The problem is the barriers society places on you, not your own capabilities.
Comment by maren — May 4, 2007 @ 9:10 am
and I second the recommendation for No Pity by J Shapiro
Comment by maren — May 4, 2007 @ 9:16 am
This discussion is interesting to me because of all the issues involving people with disabilities and access and discrimination and housing, etc., nondisabled people seem to get so hung up on the helping/asking questions thing. I don’t get why it is so hard. You approach someone like anyone else. You talk to them like you would anyone else, and then when things come up where you are unsure if you should help, you simply ask, “may I help you with that?” And then respond accordingly.
I don’t see any need to have an entrance interview where I must list for you every and all ways in which I do and do not need help. If people want to spend time getting to know me, they will figure it out as things come up. If we go to a restuarant, they might say, “may I help you with the menu?” (I am blind.) But if I have asked for and recieved a Braille menu, then obviously I’ve taken care of it. If I seem to be struggling to find something, someone might ask, “may I help you?” I might either say, yes, I need to find a room 44 and I’m late for a meeting. Or I might say, no, I’m fine. I sometimes prefer to get myself out of being lost. But if I’m just walking down the street, I don’t think it should be assumed that I have no idea where I’m at or where I’m going. We are trained for this. It is a skill. We aren’t just being let loose with a stick and fumbling around with no systematic way of knowing what we are doing.
I have a bit of a hard to understand disability in that I have some usable vision and I am also hearing impaired. So I tell people, hang out with me long enough and you’ll figure it out as you go. I don’t expect people to be perfect and know what to do all the time, but I do expect that they would be respectful of me and actually listen to what I’m saying when they offer help. It is just lovely to be dragged across a street that you didn’t want to cross while you are literally saying, “please get your hands off of me, I do not want to cross this street!” And the person doing the dragging doesn’t listen to a word you say and actually expects to be thanked on the completion of his “mission.”
I also agree, that I am happy to explain about my disability in the normal course of conversation with people who want to get to know me as a whole individual and have spent some time doing so. I do not want to tell strangers at the grocery store my life story 20 times a day.
Comment by Lisa — May 4, 2007 @ 10:58 pm
Ack! Here we have a subject matter about which I may claim more than a little expertise (despite my best efforts, a rare thing), and I go and miss it.
On perhaps a daily basis, I half-seriously chide myself for finding so incredibly hilarious just about everyone else’s reactions to my poor pathetic disabled self (I’m a blindie, too, for those of you keeping score)… I’d have to work a lot harder to find things to laugh at, otherwise. On the train this morning, an elderly woman caught site of my (rather flashy, apparently) wedding ring and expressed some amazement that I managed to find a spouse (she didn’t mean any harm, I forget her exact words but they were far more benign than my description is making it sound). So I leaned over to her ear and whispered confidentially “you should have seen his first wife…he definitely traded up.”
Then she began her spiel about how if I accept Jesus as my savior, He will heal my “terrible affliction.” It was all I could do not to giggle right in her face, which would have been terribly rude of me. So, as I typically do when I find myself in the middle of this conversation (yes, it has happened before), I reached up and popped out one of my prosthetic eyes, held it out for her to look at, and asked her, with as much earnestness as I could muster, “when I am saved, would it be wrong for me to ask Him to make them blue this time around?” (I do hope He has a good sense of humor about that one…I couldn’t resist)
As I tell most people who “make a big deal” out of it, I’ve always been this way, and it bothers everyone else far more than it does me. I learned somehow at some early date that I will never be at peace so long as I allow myself to be defined by the regard of people at large (of course, not including those who are close to me or those who do not know me but whose preconceived notions affect my life in a practical sense, such as an employer). Constantly I encounter those who assume that I’m lost or lonely or sexless or stupid or uneducated or deaf or that I don’t care about my husband’s manner of dress or film noir. But I just can’t bring myself to be bothered about it. Does that make me a sociopath? And maybe it’s bad form to get my giggles from the ignorances of others, but I remain completely unrepentant in that regard. Guess my baby blues are out, then, huh?
Comment by Kelly — May 6, 2007 @ 11:31 pm
Nice blog. I found my way here because of Jana.
Just chiming in as a wheelchair user of twenty-five years that it is not the help itself that I object to. It is both the assumption I need help and the corresponding reminder when I am doing my thing just like everyone else that I am different, you noticed, and have to make something extra out of it. Getting assistance I didn’t ask for and don’t need from a total stranger is pretty much the same thing as that person walking up to me and saying “You’re different! You’re disabled!”
Comment by Kay — May 6, 2007 @ 11:49 pm
LizzyTish,
I have been following this conversation with a lot of interest because my darling 5-month-old has spina bifida. Thank you for your insight and the book recommendation.
I agree about children and their interest in disabilities. I love explaining my boy’s shunt and his cast to them–they find it endlessly fascinating.
Comment by Keryn — May 7, 2007 @ 7:58 pm
as an amputee i have to say i have absolutely NO problem with people wanting to do things they think are helpful for me. i always appreciated it when people were courteous enough to open the door for me with two legs, so i don’t mind them tripping over themselves to do it for me now that i only have one!
initially after my amputation, things like people racing to do things to help me really did annoy me - and of course it has to do with the fact that people notice you and your disability and feel like they’ve earned brownie points somehow because they went out of their way to help the poor gimp girl…but i’ve come to realize that if it makes them feel good, and makes my life easier - what do i care? i am perfectly capable, and i know that, and if they spent a few minutes watching me they would know it too. but if they don’t…so what? maybe it’s not that they think i CAN’T open that door on my own…but simply that they realize that it takes more effort for me to do it myself, and they are nice enough to want to help. hey, if people want to take an extra 5-10 seconds of their day to open a door for me, there’s nothing wrong with that, the world could use a little more kindness and to tell the truth, i don’t have any problem using my disability to my advantage!
Comment by girlygil — July 6, 2007 @ 11:00 pm
JANA I COMPLETLEY AGREE WITH YOU ABOUT IT BEING OFFENDING WHEN PEOPLE GO OUT OF THERE WAY TO OPEN A DOOR FOR SOMEONE WHO IS DISABLED. I HAVE SACRAL AGENESIS AND I’VE NEVER BEEN ABLE TO WALK AND I’VE HAD TO USE A WHEELCHAIR SINCE I WAS 2 I’M 16 NOW AND I’M STARTING TO NOTICE NOW HOW MUCH PEOPLE FOCUS ON ME AS JUST SOMEONE IN A WHEELCHAIR AND NOT JUST A PERSON NOBODY UNDERSTANDS WHY IT’S SO OFFENDING WHEN THEY GO OUT OF THERE WAY TO DO THINGS FOR ME AT SCHOOL IS WHEN I NOTICE IT THE MOST AN EXAMPLE IS AT BREAKFAST AND LUNCH IF I CAN REACH SOME THING I’D RATHER GET IT MYSELF AND I CAN REACH THE FORKS AND NAPKINS BUT EVEN AFTER I ALREADY GOT A FORK THE LUNCH LADY ASSUMES I CAN’T GET IT MYSELF AND I END UP WITH TWO FORKS AND IT OFFENDS ME BECAUSE SHE KNOWS I CAN GET IT MYSELF BECAUSE A FEW TIMES SHE NOTICED ME GETTING IT I TOLD MY FRIEND ABOUT IT AND SHE TOLD ME SHE WAS PROBABLY JUST BEING NICE AND MY MOM DOESN’T EVEN UNDERSTAND I JUST WISH PEOPLE WOULD REALIZE THAT IF I NEED HELP I’LL ASK FOR IT I DON’T NEED TO FEEL LIKE I STAND OUT MORE THAN I ALREADY FEEL LIKE I DO
Comment by HALEY — October 29, 2007 @ 2:15 pm
I FORGOT ONE MORE THING WHY DO PEOPLE WHO AREN’T DISABLED GET OFFENDED WHEN THEY ASK ME IF I NEED HELP AND I SAY “NO I CAN GET IT” WHY DOES THAT OFFEND THEM SO MUCH PLEASE TELL ME IF YOU ASK ME IF NEED HELP AND I DON’T I’M GONNA SAY NO IF I CAN DO SOMETHING ON MY OWN I’M GOING TO IF I HAD LET PEOPLE DO EVERYTHING FOR ME ALL MY LIFE I WOULDN’T BE ABLE TO DO ALL THE STUFF I CAN PRETTY MUCH THE ONLY THING I CAN’T DO IS WALK BUT I CAN STILL CLIMB TREES AND SWIM AND PLAY SPORTS AND EVERYTHING ELSE
Comment by HALEY — October 29, 2007 @ 2:22 pm