Years ago I wrote an article called 'Culture to Culture: Issues in Deinstitutionalization.' In it I remarked that people with disabilities can get 'gratitude fatigue' from the constant expectation of their 'forever gratefulness' that they were home, in the community, from the institution. Some of what I wrote in that paper was considered a little controversial and a little outrageous. It's all old hat now, and, indeed, I hadn't thought about the paper for a very long time.
I did on Saturday.
Joe and I were leaving the aquarium, long ahead of the rest of the family, as I was uncomfortable in my chair and I was tired from steering my chair around so many people. The concentration involved in getting around and not slamming into someone is almost superhuman. So, we said our goodbyes just as the kids were about to experience SHARK BITE.
The exit out of the aquarium is, conveniently, through the gift shop. We picked out two tea shirts, that came with matching tiaras, for the girls. I waited just outside the store, just in front of the exit gate marked with the disability symbol. There were two mid thirties women and one man, of the same age, who were standing outside, also waiting for someone. When I saw Joe clear the line up, I pushed the gate open and exited. I was being watched by the group, I am a travelling entertainment extravaganza, I smiled at them hoping that would end the observation.
One of the women called over to me, "We knew you could get through that gate yourself."
Again, from me, a smile.
And a thought, "Why am I in this conversation with strangers."
She continued, "We didn't help because you didn't ask."
I said it, I didn't want to, but I did, "Thanks."
Shit now I have to be grateful when people don't do a freaking thing! I wrote about gratitude fatigue and now I'm experiencing it.
Don't go all hyper-critical on me. I am grateful. I think gratitude is a wonderful thing. But what's really tiring is having gratitude pulled out of me. I just wanted to go through the gate, join up with Joe and head home.
But no.
I had to be grateful for being not helped first.
You got verbally "pat-patted" on your head. Gah.
ReplyDeleteCome on Dave, you seem so confused at times. A situation where someone is aware that you had the situation in control and doesn't help you is surely to be welcomed. This is something that you have written previously that you would want.
ReplyDeleteIn future, it would hopefully happen all the time without it being pointed out. In this case though I don't see why you felt the need to say "Thanks" What about a response of "Yes, that's perfectly right, I was managing and didn't need help. What you did was so much better than what I normally see. People want to help me just to make themselves feel batter. maybe the day will come when everybody will get it right and you won't feel the need to point it out."
Dave,
ReplyDeleteI think that your blog sometimes gives contradictory messages.
I have read in the past that you have been critical of people who have helped you when you didn’t need it.
In this case, someone saw that you were capable of doing what you needed to and didn’t help you. Surely this is to be welcomed!
I’m not clear on why you felt the need to say “thanks” perhaps a better response would have been “You’re right, I didn’t need help. I often find that people try to help me so that they can feel good about themselves, even when I don’t need the help. Maybe in time everyone will do what you did, and it will be so common that there is no need to remark on it”
Such a remark would be about acknowledgement rather than thanks and would also point out that perhaps feeling the need to point out what they had done was a little patronising and self-serving.
Jim
wouldn't it be lovely to shout back "And I knew you were gonna be a supercilious patronising arsehole!!!"
ReplyDeleteAnd Dave you are just going to have to stop the self demeaning thank yous etc. Because you know you are just feeding this insatiable need for warm fuzzies that people seem to crave. Stop it and travel tall man!
:)
I cannot imagine how EXASPERATED I would be if, every time I passed through a doorway, people were waiting to watch and comment loudly about my "ability" to do so.
ReplyDeleteGood God. If you cannot stop staring at me, at least shut the hell up about it. Stop making me about you!
Sue
There's a big difference, isn't there, between feeling grateful, and feeling pressured to express your gratitude to strangers?
ReplyDeleteI mean, we all like feeling happy. But if we had someone following us around all the time, asking: "Are you happy now?" and "Why aren't you smiling?" by the hour, then even happiness would get exhausting.
Sometimes your blog reminds me of my experience of being a young woman in public -- how people are often intruding on my day in demeaning ways, but they expect me to smile and be pleased about it.
ReplyDeleteI think they aren't even conscious of how they're exercising power over me. They enjoy belittling me because it gives them power, a superior position, and that feels good. The expectation that I'll smile in response to them treating me like a five year old is part of that power -- unconsciously, they know my only choices are to go along with them or to be seen as a rude bitch for acting annoyed.
People seem to do the same thing to you, only it seems worse, and more frequent. It seems like you can't get through a day in the world without something like this happening.
There are no easy answers when people "mean well" because the exercise of power is unconscious, and they are truly surprised when people aren't thankful. I just know that I always feel worse after I've performed the expected role of smiling and acting thankful. Participating in my own loss of power stays with me for the rest of the day -- it makes me feel angry and frustrated. Being short with people is harder in the moment, but it's more authentic to how I feel.
Wow, I hear your frustration and am reminded of how students with disabilities in schools always have to "earn" their spot in a regular classroom while every other student has the right to be there. When will we realize as a society that difference is just different and not cause for pity or celebration. We can all just BE in the world because that is where we belong.
ReplyDeleteWow. That sounds exhausting.
ReplyDeleteSo does having to have the Right response when intruded on. Sod that for a game of marbles.
It's human to need reassurance that one's doing - not doing - the right thing? Or maybe it's canine to need dog-biscuits when one performs a trick. You could carry a supply for just these occasions. ;)
This is a situation that did not require any comment by bystanders. Some people have the uncontrolable urge to say something and it usually isn't well thought out. Open mouth, insert foot.
ReplyDeleteYeah. All I can say is "sigh". Hard to get across that it isn't so much about whether help is offered or not, or even whether you want it or not(it varies). It's more about what else comes along with the help (or in the case of your story, the lack of it). I hardly know what to say about the patronizing self-congratulation in the comments you had to endure...
ReplyDeleteAnd BTW, I don't agree with Anonymous that your blog gives contradictory or confused messages. Just points to the complexity. Again, sigh.
Oh, Dave, thanks. I had a chuckle because I so recognize this.
ReplyDeleteI read this http://feministkilljoys.com/2014/04/14/imposition/
ReplyDeleteyesterday and love it, and thought what would Dave and Rachel Cohen Rottenberg think on this. And then I read your post yesterday and this seems really relevant.
I think she was completely nosey and rude. She needs to get a life and look after her own affairs and just get on with things and let you get on with hers. Its nice to acknowledge each other normally and get along with what is important to us. Yes if someone asks for help try your best if you can or just butt out.
ReplyDeleteI think that was almost creepy.
To those who feel Dave's blog is contradictory on this point, I don't see it that way at all. There is the desire not to be helped when help is not needed. Check. But when someone doesn't help because you don't need it and then makes a show out of pointing out their insightfulness, that's just annoying and intrusive. How about not helping when help is not needed and carrying on without comment.
ReplyDeleteI agree with emma and wendy that "anonymous" is incorrect in reading Dave as being "confused" or contradictory in his messaging about helping/not helping. I suspect that "anonymous" is projecting their own confusion onto Dave. Instead of blaming Dave for confused messaging, anonymous should look within, and should also read more blogs by other writers with various disabilities on the issues of helping/not helping, to sort out the nuances that I think they are missing.
ReplyDeleteEssentially it's like this:
Sometimes we need help, and sometimes we do not. Just like anyone. The only real difference between disabled/non-disabled people being the exact context of when a person might need help or not.
Others, of course, cannot read our minds to know when we need help or not.
Polite way to offer help: "Can I help with X?". Which can be responded to in any of several ways, depending on the disabled person's need:
a. "No, thanks, I got it."
(Polite response, "Sure, have a good day", would-be helper moves on with their life without further action or comment)
b. "Yes, please"
(Polite response: perform the assistance that had been offered. Both helper and helpee acknowledge each other politely and move on with lives)
c. "Yes, but instead of doing X it would help more if you could do Y"
(Polite response: perform Y instead of X. Helper and helpee politely acknowledge each other and move on with lives)
OR
Non-disabled person: Thinks disabled person seems to be doing okay. Does not offer help.
Disabled person accomplishes task just fine. Moves on with life.
(Polite response): Makes no special comment. Moves on with life.
(No, the polite response is NOT to make a big deal out of having not offered help when help didn't seem to need offering.)
OR, disabled person appears (in the potentially mistaken perspective of the non-disabled observer) to be having difficulty with the task.
(Polite response): "Hi, do you want help with X?"
(See further above for possible ways the disabled person could respond to offer of assistance, and polite responses for each possible response.)
I often get told by a family member that I should be nicer to people when they want to help me. I'm not going to say I've never snapped at somebody who was in fact only trying to be nice. It will happen occasionally on a day when I've been offered help I don't need and then chastised for not taking the help I don't need. By a total stranger. I do try to be polite and most days I am not always. I can't speak for what Dave is feeling but there are some days I do not run an errand or go out with friends because I am just to tired to deal with "no thank you... no really that's Okay Inner sigh ok fine thanks" Strangers are always always telling me to take my time as if that's going to make my gait look less unsteady. I'm actually not as prone to falling as people think. Much like Dave's experience I hate it like see colors hate it when I'm minding my own business and somebody says " you get around so well but don't walk so fast because you might fall" Seriously.... you needed to tell me that because it makes you feel better? For me the reason its frustrating is that, even though I'm sure no one means this, is its intrusive into my day. It jars me from the concentrating moving under my own power takes and maybe mostly, if I wasn't a person with a disability no one would stop me to give there opinion on how I am going about my day. And most of the people who do it expect that they should then be able to get a thank you for just what... pointing out the way I walk? Now if someone says can I help you and then takes no for an answer if I say no that's totally different. It can be exhausting some days to constantly be polite and I have had the exact same thing where I say thank you to somebody and then can't for the life of me understand why I did it. And then I get angry for being put in the situation where I feel like I have to say something. Because there was a comment made that was totally not needed. It's just tiring that all. Its not really contradictory. What it as sign some days that says "with all do respect and kindness please engage your brain before making a comment" :D
ReplyDeleteLately I've taken on the word "Excellent". It covers so many social exchanges, and is a good filler. If one is prepared by habit and repetition, one can subdue one's instinct to say 'thank you', and instead use something such as
ReplyDelete"Excellent."
"Duly noted."
"Right-o."
"I see that."
Or even the simple, slightly vague but usefully patronising "Ah," which can denote acknowledgement, surprise, alarm or boredom depending on one's intonation. All of these serve the purpose of filling a conversational gap, without crossing the line into rudeness. I use them daily.
Or you could go the funny route: clap like a seal, and shriek "I DO IT MYSELF!! I DO IT MYSELF!!" But that might be offensive.