It's pet peeve day.
I was riding the ferry over to the island when I overheard someone talking about working at a summer camp with kids with disabilities. The conversation was full of "f,umbles".
What is a "f,umble?"
"I just love working with disabled kids, but you know what, I learn so much more from them than they ever learn from me."
"I spend time volunteering at Special Olympics and you know what, they give me so much more that I could ever give them."
"F,umbles" come in variants of course:
From one non-disabled person to another who works with people with disabilities:
"I don't know how you do what you do, I just could never do that myself."
"It's amazing how you cope with the kids you work with (often said about adults) you must be so much more patient than I could ever be."
Another f,umble variant:
From a non-disabled person to a disabled person:
"You are just so amazing, I could never cope being in wheelchair like you do."
To a parent of a child with a disability:
"You must have so much more love in your heart to be able to cope with/ handle / parent your child with Down Syndrome."
F,umbles happen outside the disability context, of course, awards shows are full of them and they are equally annoying there - but I'm staying within the context of:
"What I'm amazed about with the paralympics is that they have the courage to go out and compete like that, if I was disabled like some of them, I'd never have the courage to go out." (actually said)
By now some of you will have guessed that "f,umble" is a portmanteau of faux and humble. It's a word that I coined some while ago and I've been using it in my head for quite a while. I find faux humbles annoying, particularly where the person arranges their face into an angelic glow to go along with the f,umble. I'm not sure why people feel driven to do this, but they do it often, particularly in my field of work. Yikes, it's everywhere. It's an odd form of attempting to demonstrate, in a superior way, one's personal humility. A kind of 'braggart humility" I suppose. When I'm in my darker moods, I see f,umbles as hiding an equally dark kind of hositility - and in those moods, when I hear them, they frighten me more than annoy me.
Anyways, I wanted to introduce you to a Dave-ism and wondered if any of you have you-isms yourself, I'd like to hear them. (But, no f,umble here, I wrote this mostly to get it off my chest, hearing yours would just be the cherry on top.)
I'm curious what your issue is in many of these examples. Not because I think you're wrong to feel that way but because I really want to know as the parent of a child with ID.
In the first two examples, is it the thought that the speaker doesn't think the people they volunteer with are capable of learning much? Or that they volunteer for what they get from it rather than what they give?
In the example of telling someone "I could never do what you do," what is the offense? This one strikes me particularly, because I walk around in awe of firefighters, hospice nurses, and kindergarten teachers saying that same line and no one ever thinks it is offensive. To say you don't have the patience for certain professions (or any other necessary skill or trait) doesn't seem all that sanctimonious to me. I'm interested why it does you? Is it the notion that some might find patience a necessary trait in dealing with people with ID? I certainly find it difficult to parent my son without lots of patience; he has pulled out swaths of my hair, bitten my face, kicked me in the stomach. He is small and doesn't know better at the moment, but I fear a child with three more years of size and strength who still doesn't understand that this aggression is inappropriate, and what injuries I may face. I suspect I'd need even more patience if he were not my child and I didn't already love him to pieces, such as if I were his teacher. Similar for being a teacher/professional for those whose disabities may lead to untimely death. I don't think I would do well emotionally in a career where there was high likelihood of patients/students/clients dying at a young age, and I'm not sure why voicing that is looked down upon?
My purpose is not to put you on trial, Dave, nor to offend anyone else. If I have the wrong outlook or am missing a major point I want to know, of course.
Politics, Ethics and Mental Widgets is the first blog post I made about something I call widgets or mental widgets. Widgets are when people make up lots of connected ideas in their head into a big structure, and then use that structure as a way of approaching life, ethics, whatever.
If you're talking to someone about the personhood of people with severe cognitive impairments, and their response is something like "But they can't be people. If they are people then fetuses are people too. And if fetuses are people then women could never have the right to choose." Then you've encountered someone so firmly in the grip of widgetry that it may be impossible to talk to them. People using widgets can't accept large parts of reality because reality always contradicts widgets.
I'm terrible at forming or using widgets. I used to try because people convinced me there was something wrong with me if I couldn't. But I just couldn't. It got worse every time I tried. So now I exist happily outside of widgets.
Which means I can deal with the real, concrete world far more directly than a person inside a widget ever could. It basically means that instead of getting ethics from a system of ideas, I get my ethics from a few basic values combined with whatever situation I'm in. To a widgety person, my stands on things can look contradictory and confusing. But that's because my viewpoints reflect the complexity of reality. Which is too complex for even the most complicated widgets to cover.
Which is a good thing. It means I don't have to carry these things in my head. The world holds onto reality for me, I don't need to make a complex model of it. Which frees me up to actually do things.
Dave is another thoroughly non-widgety person. I show his writing to widgety friends and they say things like "But he's supposed to be all about disability rights and yet he says he's happy about having pushed himself to do something..." Yes, and that's because disability rights isn't a collection of perfectly matched ideas, it's a living collaboration between our values and the world around us.
So that's my word, "widgets" or "mental widgets".
Of course my friend remarks on what she calls "Amanda-isms" that are more the result of my grain working weird than anything else. The last one she referred to that way was "This doorknob is confusing my foot."
I open doors with my feet because with a tilting wheelchair my feet are at doorknob height. So I was fumbling with a doorknob. And I can normally use that knob but that night I couldn't. Hence "That doorknob is confusing my foot."
That's less a commentary on anything important and more a commentary on the state of my brain though. My friend tried and failed to explain to me that my mind is confused and my mind doesn't live in my foot. But from my point of view it's my foot that can't open it, so of course my foot is confused.
So there it is. Two Amanda-isms of different sorts for the price of one.
I really don't like the idea that it takes more patience to deal with people like me than with people in general. Nondisabled people can be nasty, violent, rude, all kinds of things, and people never say "It must take so much patience to work with That Kind Of People" about them. That's why it offends me to hear that. (And please nobody make assumptions about what I'm like now or ever was like. They're probably wrong.) It's not about the existence of individuals in the group who might try people's patience. It's saying that about a group of people overall.
And when that is a general belief, it plays into the sympathy the general public shows for parents who murder their disabled children. "I could never have dealt with being the mother of a child like that. I would never judge them for killing them. It must be so hard. She probably just couldn't take it anymore and snapped." That's the automatic go-to assumption no matter the situation -- even if the child was easier to parent than average, even if the parent wasn't the caregiver of the child at all, and so on. Not that it'd be justified if the child was difficult to care for. But frequently the circumstances give the lie to every automatic excuse given.
So as a disabled person, I'm already aware that if my parents wanted to (thank the gods they don't), they could fly across the country and kill me. Or my caregivers could kill me. And people would excuse them. And they'd probably get a lesser sentence than if I were nondisabled. And a whole lot of the mentality that goes into that is intimately tied to the common belief that it takes a near saintly amount of patience to care for a disabled person.
So there's an incredibly dark underbelly to this belief. I know not everyone with this belief would excuse killing. Don't get me wrong. But when people do excuse killing us, this belief is intimately tied up with that. It's the idea that no ordinary person could handle us -- and that if made to, it would be understandable if they became violent, even murderous.
Put it another way:
I was abused as a child in all kinds of ways, by family and caregivers. Including things that while not intended this way, could have killed. Including attempted murder. Really heavy duty stuff.
Do you know what people say when I tell them?
If you guessed that they offered sympathy or shock or words of comfort or concern, you'd guess wrong.
They say. "It's so hard to take care of a disabled child." Sometimes even. "I don't think I could do it."
You should see their faces when I tell them. They get this look of concern on their face. Not concern for me. Concern that I'm not objective enough to understand the truth and need to be told. If anything at all.
I can't describe how horrible it is.
So I can't take it as either innocent or factual. The associations in my head are too sinister. It's not that people intend to be horrible about it. But they sure manage anyway. I've never heard a nondisabled person told "It's just so hard to take care of someone like you" when they disclose a history of abuse as a child. It's just.. like many common beliefs, it looks innocent to the average person but it has claws and teeth that kill people who aren't average.
I kinda agree with anon #1. I can see sorta what Dave is saying, and he has said similar before. Yet - I would love to hear what would be appropriate to say verses the "not so great" things that folks say. Are the sayings truly offensive?
I have disabilities, yet I look at someone with more severe issues and think that I couldn't cope with what they do.
I believe it is better to give than receive, and there is joy I get. I'm sure I would feel blessed if I could help at the Olympics.
I know young people that have worked/volunteered at camps for special needs children and come away with so much knowledge - life knowledge.
I am not brave, and even a bit shy, and I know that no matter how fit I got within my limitations, I would never have the courage to go out for the Olympics. Just the legistics of getting there are overwhelming.
So - although I don't want to "be superior" I do say things in a similar manner.
Help us Dave!
I'm not sure if this falls in the same category as f,umbles - but I often use the phrase "accidentally on purpose". I find people often claim they did something by accident - but there was really a purpose behind it, whether they were aware of it or not.
"I didn't mean to do it. It was an accident!" Yes, there are accidents. I'm the unhappy result of one - but I'm speaking more to actions of choice, but then twisted around to look like it was beyond their control.
Yes - a lot of hurtful things have been done "accidentally on purpose".
I couldn't have said it better myself. Completely agree with you. I read the post and thought huh? I think often when people say they couldn't do it, thats what they mean, they don't understand. Sometimes a thing is a thing and thats all it is.
I find that the comments Dave quoted tend to go in two directions. In some, the people with disabilities are seen as inspiring, to the people who work with disabled children at a camp, to the people who watch or help at the Olympics. I've read countless instances of wheelies doing groceries, getting out of a car, opening a door, doing everyday things like that and being congratulated on how courageous they are. (It hasn't happened to me, I only use a walking stick and I live in a country where people speak much less to strangers than in, for example, the USA.) So can volunteering at a camp be rewarding? Yes, of course, but the kids want to be seen as kids, want to have fun, not act as sources of inspiration. Are the Olympic athletes amazing? Yes, they are the top of their discipline, they trained hard and reached high goals, and that can be, indeed, inspiring. But is it inspiring that someone with a leg amputation does wheelchair races? I don't see why it should.
The other direction is that the people with disabilities are seen as terrible burdens and anyone who has any kind of contact with them is automatically a saint, to be admired and incapable of doing anything wrong. I think Amanda wrote well enough about what that can lead to.
The problem with these statements (in my unhumble opinion) is that they
a) have an air of "Oh, the poooooor disabled person" (as if a disability is a reason to pity someone)
b) have the assumption that disabilities are there to make able people feel better about themselves. More 'disability theatre'. Oh, the disabled people are SO inspirational! They're so SPECIAL! Anyone who works with them is a candidate for saint-hood, because it's all so TRAGIC and DIFFICULT!
I am in full agreement with Moose.
I am not present on this Earth to inspire people by my very presence. I happened to be born this way, but please save being impressed for when I do something really worth being impressed by.
That being said, I'm blown away by the Paralympians because they've said "F you, I'm gonna be an athelete anyway" and gone out and done it. And I am hopelessly non-athletic, but I can't blame that solely on my dwarfism with some of the swimmers I've seen.
And for all of you "I couldn't cope" people? You'd be surprised what you could adapt to if you had to. You really would. Dave's no saint, but he seems to do all right, and he wasn't always using that chair now was he?
I am a "staff" and have been paid since 1987 to take care of people who have different emotional needs or physical problems. But it all started in the 2nd grade when another girl in the bathroom could not button or zipper her pants. No one else would help her. Yes, I saw her withered, malformed arm with two odd fingers but she could not go back to class with her pants undone. I didn't care about her arm she needed help with her pants. Seemed simple enough to me then and still does now, give the kid a hand. My pet peeve is being told (usually in a sugary sweet voice) "It takes a special kind of person to do what you do". Really? How so? A person who that knows not everyone is born with their parts in all the right places, or in good working condition. That even when born that way not everyone makes it to the end the way they started? AND that does not make them any less of a person. I knew that by 2nd grade. Nothing special about that.
Have a great day everyone, whether you are special or not :)
PS: I was listening to a recent NPR story about how many ex-military people are focusing on the para-olympics, competition may be a bit more fierce these days.
I agree with Dave. I really appreciate the comments by Amanda, Moose, Louna and Rachel in Idaho. I can't quite explain how I feel when I'm given one of those little messages of "encouragement" that seem to want to elevate me to sainthood because my son happens to have Down syndrome - and then express their relief that their child doesn't have a disability in one way or another ... "I just couldn't do it." = "So glad it was you not me!
I don't need to be elevated to some special sainthood category because I have a child with a disability. It would be preferable to just be considered a mom like any other, but very few people get that.
But, I don't totally understand having a disability. I really do find the way people adapt to disability to be fascinating. I look at a person walking down the street using a cane to find there way, and I know I look a little too long. I look because I just wonder how they do that. I try not to stare because I get that it's wrong, but I really want to.
And, if Amanda would put a video on YouTube showing how she opens a door with her foot, I'd watch. I'll admit something even worse than that.
I sat in my office chair today and tried to open my door.
I thought your explanation of f,umbles was going to be that it stood for (I'm so) f-ing 'umble. I'm going to wash my brain out with soap and water now...
Well, it's not a portmanteau, but I came up with a pet phrase after hearing stories from my aide about what the Special Ed professionals in my local public school get up do, each day (her other client is a boy with C.P. just entering first grade ...Today!). And that phrase is: "Reverse Pinocchio Process" -- when all the energy of special education is focused on fixing a child to fit the system, and none on actually paying attention to how the kid actually thinks or learns, or would benefit from learning (spending class time on physical therapy to get the child to hold a pencil, for example, before even starting to teach the child the alphabet, or how to read).
I call this the "Reverse Pinocchio Process" because it's turning real children into puppets who learn how to act "normal" without understanding.
I find it hard to believe that someone (like Tamara for example - only because she commented) always wants to be just treated like a mom. The parents of disabled children that I know fight for the rights of their children. They spend hours in offices, with paperwork, outfitting their homes, etc. Maybe a part of them wishes they could be treated like "a mom like any other" - but the reality is that they are not.
Often these moms are the first to ask for special equipment, government support, or community support. Why? Because their children have special needs. And I say go for it! All children should experience life to the fullness they are able.
But - you can't have it both ways. Many cry "Stop treating us special. Stop saying I'm different" until they want something.
Why can't we turn these statements around? If they say "I could never do what you do!", ask them why? Then promote good behaviours - say something like, "You'ld be surprised what you could do. I know of a couple of places that could use volunteers", and be prepared. The sincere may take you up - but will also learn to be careful what they say. The false ones have been called out.
No - not saints. Just using gifts and abilities they have to do what they have to do. Most people could probably do it - but have not had to. And you can be sure that they are thankful they don't. It is hard work.
An example from my life - pre-disabilities. I used to speak in front of large numbers of people. I was nervous - wanting it to go well each time. But I wasn't terrified - I enjoyed getting the message across and entertaining folks withing the subject. So many would approach me and say "I could never do what you do!" Maybe they could, maybe they couldn't. But I took it as a compliment. I knew more than they - I knew that it took a lot of hard work to make it look easy. But I didn't scorn them because they didn't feel they could.
I think there is a big difference between saying "I couldn't do what you do" to a fireman or a policeman or a public speaker for demonstrating skill and courage than saying, "I couldn't do what you do" to a parent for loving a child or a staff for working with someone with a disability. Big difference. Dave is referring to faux humility not actual humility, that makes a big difference to what he's saying here.
My problem is "inspirational".
I do not exist to be an inspiration to anyone.
I am just living my life, using what I have to do what I can.
In my opinion, the word "inspirational" is getting flung around unrealistically, by people who are observing people with disability doing something that they really want to do - the Paralympics. Now, don't get me wrong, I think the Paralympics and Paralympians are terrific. However, the Paralympic athletes are simply athletes. The fact that their appearance is somewhat non-standard changes nothing, really. They are athletes, who have worked really hard to hone their skills.
The people who talk about how "inspiring" Paralympians are aren't really inspired though, are they? If they were truly inspired, wouldn't they hire people with disability? Make sure their buildings and streets were accessible? Include people with disability rather than separate us?
Diary of a Goldfish has a lovely post about watching the Olympics and then watching the ParaOlympics ... and finding that her self-image was more enhanced by the first than the second. Chiefly because of the smarmy able-bodied announcers oohing and aahing over the amazing fact of somebody with this or that disability actually competing.
Full disclosure: I'm still a TAB at 65. Long ago I had a job in which I did a lot of telephone work. One close friend would routinely remark how hard it must be to talk to strangers like that, how she could never do it, how it must take amazing courage, yadda yadda. The first time she said it, I felt flattered, like she had praised some special ability I had. But by the tenth time I'd begun to feel that there must be something wrong with my willingness to keep doing it. And eventually? I couldn't pick up the phone, and had to get out of the business.
I don't know what it must be like to be on the receiving end of such comments as the TAB parent of a child with a disability, or as a PWD oneself. But I can testify that the form of the comment is in itself destructive.
Wow! I love the term f,umbles and particularly like the definition from Defying Gravity! Dave, I think the notion of people wanting to be the best at being humble is hysterical but so accurate. I could never put my finger quite on this 'attribute,' but you said it beautifully!
I have to start with my own me-ism, just for the sake of sharing. The ironic thing is that for most of my "pet peeves," I do find myself sometimes doing something similar, and then being at least as annoyed at myself as I am with someone else who does the same. So my example for today is people making a point of how difficult their own life is, how much they have to save or struggle to make ends meet, or whatever the supposed case might be, when in fact they are doing fine, or better than fine. People who gripe because they're on a budget and can only go out for dinner three nights a week, or can only get their nails done every two weeks, or whatever other nonsense, when they - or we - don't see what it really is like to struggle, to be hungry, or unable to clothe your family. It would be great if we all could help each other to be fed and clothed and have homes and... But the part that irks me is the complaining, acting like things are "so bad" and they are some special person for muttering through, when that's all a load of nonsense.
So that's my purpletta-ism of the day. But on to more important things.
Amanda, your writing is always so powerful. I have always been kind of sickened by the 'what a special person' concept, that people are some kind of heroes to spend time with other people. Just don't really get it, it doesn't make sense, but the part of it that I do "get" has always caused me to be a tad bit nauseous. But your writing, your clear connection of how it's so deep, how language and the values it reflects goes so far deeper than the words, the meaning of the words, or even the feelings. Thank you.
There are some things that just horrify me. That when I think of them, I can't help but have a string of expletives run through my mind... Dave in your post that someone wld actually think let alone say If I were another person I wouldnt go out... Really?? What on this earth makes someone think that his or her life is so freakin' superior that he could decide what he would do if he were in someone else's shoes? Or makes him think he actually has any idea what that other person's life is like? I might think to myself if I were such a close-minded jerk I wouldn't go out in the world... (kidding, of course)
I have a hard time controlling my thoughts when it comes to this kind of ignorance. Such a person may just not understand. May not have had experience with people with disabilities. I don't mean to judge him (that's one of those accidentally-on purpose things... I know I am judging him, so in essence I do "mean to," I just don't like to see in myself that I am doing so).
But dear Amanda, what you said about how people have reacted to you when you have shared your story, of abuse, is just horrible. I am so sorry that you have faced such ignorance. How absolutely sickening and hurtful. There is NEVER a time or reason that it is understandable that someone would hurt someone else. Never. I may get on my spouse's neerves (I am not married, but if I were I am sure I'd get on their nerves) but would it then be okay for him or her to treat me badly or try to harm me? Not ever. And that's in talking about adults. For G-d's sake there is never a time a child should be in a place where she should be hurt by someone else particularly a parent, where that would be justified, or excusable. Never. That someone would respond to you in that way is one of the saddest and most sickening things I have heard in a long time. I testified in court against a person who had sexually assaulted a young lady with a disability and his defense was that she had asked for it by her behavior. Really, that's the defense he and his lawyer tried to put on. Well he's in jail. Has been, will be. The jury pegged that as the bullsh** it is. I am heartened that twelve average citizens knew without a doubt that assault is assault is assault. That a victim is not to blame. Ever. I am going to get off my soapbox because I am preaching to the choir but I am so sorry that people have had such a response to you. I was abused as a young person - it's 30 years later and I am just barely talking about it - I have been told by family members that it didnt really happen, or that it couldn't have been as bad as I "felt" it was - but I cannot even fathom what I would do if someone would suggest to me that they empathized with my abuser, that things were hard for him, or that I made things hard for him. I give you so much credit for sharing your story, for getting through what you have come through, for seeing people's response as so incredibly wrong, and calling them out here as such.
I have so many more things to say but have gone on too long here. Thank you Dave for adding a humorous and gentle touch to the introduction of such serious stuff. Thank you to everyone here who shares such insight. It's not meant as a f,umble, I do personally learn so much here. And Amanda -- i know that we dont know each other but on a very personal level, I am so sorry & really... thank you...
I have been reading your blog for a while now (though rarely the comments) and I thank you for sharing your encounters and experiences.
I am based in the UK and I have found it fascinating the articles that have sprung up from the Paralympics. Therefore, for your interest:
Anon #1 here again...
Do the people in this world that harm those with disabilities NOT prove that "not everyone can do what *you* (you, caring parent, advocate, caring caregiver of people with disabilities) do?"
You know, I used to say "I don't think I could deal with having a child with a disability." Now I have one. Honestly, some days I still think I don't have what it takes to give him the life he deserves. I see a therapist for that. It doesn't mean I don't love him or that I wouldn't jump in front of a moving train to push him out of the way. It doesn't mean I don't respect his personhood and his ability for self-determination. It means I don't know if I have the tools to educate him the way he may need, the balls (pardon the language) to speak up for his rights and needs, the emotional wherewithal to potentially bury him or watch him live through his later years (his 50s-60s) with dementia. Sure, avoidance of these things is promised to no parent, but to have to stare that reality down every day beginning on the day of your child's birth isn't easy. I can totally understand someone telling me "they don't know if they can do what I do," because some days I don't know if I can do what I do. Some days I drag myself through mud to do it. Some days I'm on cloud nine to do it. The blessings outweigh the pain you feel as a parent most of the time, and you do grow into the role along with your child, which those outside the role may not understand. Still, I don't fault them for not knowing either of those things; how could they? There was a time when I didn't know those things either.
I think something it would do us all good to remember--and I will own the fact that I remind myself often--is that every disability is different, and much more importantly, every person with a disability (or affected by disability as a parent, etc) is different. Some disabilities make things physically or emotionally more difficult than others. A person in a wheelchair may not have a shortened lifespan; but a person with Down syndrome may. A person with Down syndrome probably doesn't need a cut curb; a person with a wheelchair does. I don't think a person in a wheelchair (without a life-shortening disability accompanying it) stands to judge a mother who isn't comfortable with the idea of outliving her child any more than a mother of a child with DS can tell a person that "it doesn't really matter that you can't access the playground...it's not like you can ride the slide." It's equally insensitive.
We, as the "disability community" are all in this together (I hope no one takes offense to my calling myself a part of the disability community, though I am TAB). I find myself much more in tune with the needs of people with disabilities than I ever have been since reading this and other blogs that deal with the topic of disability as a general, rather than only reading blogs about DS. I have spoken up about several issues regarding accessibility since I started actively thinking about them while reading disability blogs. There still seem to be many areas where we could learn from each other in our diverse experiences. I am thankful that we have Dave as an amazing bridge between those with intellectual disabilities and those with physical ones. I look forward to learning more.
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