Wednesday, May 16, 2012

No One's Tone

"Are you all right big fella?"

"Is your ride downstairs?"

"Do you need someone to wait with you?"

Hear those words with that kind of over-dramatic pity said loud enough for everyone to hear KINDNESS. When people are speaking with me but performing for other, I go quite cold inside. I know what's going on, those speaking to me, at the elevator door, have assumed that I have an intellectual disability - or perhaps - they are simply using a generic 'them' voice.

I assured them, nicely, that I did indeed have a ride downstairs and that I was capable of getting there on my own. They looked startled at my manner, one of a fairly competent guy, and wished me a good day. I did notice that their farewell was different, the tone, the manner, was one of speaking to an equal. Or as equal as they'll let a disabled person be.

That tone of voice.

That specific tone of voice.

Is the tone of voice that people with physical disabilities refer to when they say, 'they talk to me like I'm Ret@rded'. I get what they mean. I don't like being spoken to that way either. I really don't. It grates, it demeans, it insults. I kind of hate it.

But here's the thing.

I don't know a single person with an intellectual disability who likes being spoken to that way either.

Not one.

So maybe we need to say "They speak to me like I'm lesser."

Or, "They speak to me with a voice full of assumptions."

Or, "They speak to me in a tone of voice that even puppies find offensive."

Or, maybe best, "They speak to me in a manner that no one deserves."

Maybe it's time we in the disability community begin to bash down some of the hierarchies that have taken root here. I kind of think the disability community should work towards inclusion and access, if anybody should get this we should.

I hate that tone of voice.

My anger is that it is used, not that it is used ON ME. My protest needs to be about respecting all ... not simply trying to get someone to realize I'M NOT ONE OF THEM!! Because in this community 'them is us'.

Other's shouldn't other others.


Rachael said...

I know what you mean - but think your suggestions need some rethinking...
'..lesser' - that's accurate for me, but uncommon enough not to be easily understood.
'..full of assumptions' - almost ALL voices are full of assumptions - it's just these ones aren't accurate plus you don't like them.
'..puppies..' - fairly challenging for anyone (perhaps my son) who takes things literally - my puppy wouldn't mind in the slighest.
'..deserves' - I find 'deserve' such a difficult word to use, that I try to actively avoid it - it seems to presuppose you have to DO something, or NOT do something - for something to happen. Sorry, dreadfully vague, but as soon as I hear it, I'm off thinking of what situation would mean that it WOULD be 'deserved' rather than really hearing the person.
Wish I had a perfect answer - 'demeaning' might be a possibility - but again, it's not in common usage. 'in a way I didn't like' is simplest, but vague - perhaps enough for a general conversation, and listeners can ask more if they like?
Sorry to pick - I'm not picky about your reaction.....

Heidi said...

Couldn't agree with the quest I loathe "that tone". It often goes with the words "Bless him/her", the sentence "they're so good with him/her" (in other words, s/he has good friends!!!), but NEVER with the words "the gap is widening"..funny that!

Anonymous said...

I always get this worried voice; are you okay? A question that sounds as if the person asking it wants to call an ambulance as soon as she/he takes a closer look at me.

Worrying and making me feel very unwell.

I guess the intention is good but its all the explaining I have to do then what exhausts me even more. Because sometimes a silent no is simply not enough for the in my opinion overly concerned.


Anonymous said...

I get frustrated - it is a constant struggle to be accomodated - physically and socially. We want ramps and special seats, access to everything and inclusion to all. Yes - it is important. Yeah for the progress! But then we don't like how people include us.

We are being treated the same as others - just like someone who doesn't speak English - what do people do??? Speak louder and slower. Yup - that helps them understand English - NOT.

Can we not be happy that someone takes the time to make sure we are ok? Can we not appreciate when someone takes the effort to include us. Sure - there may be some assumptions that are off - but a few words from us, social interaction - soon tips the scales of assumptions.

I feel we got to stop thinking everyone is against us. Most people want to help. Yes - they may speak "down" to me - but at least they aren't ignoring me.

It can only insult me if I let it.

Remember, we are the outcome of our life experiences - and perhaps the people we meet have only met certain types of disabilities. Or worse, just know disabilities from TV or movies.

Also - meeting someone who is disabled can make others feel uncomfortable. Lack of experience and fear - often the fear of saying the wrong thing! Getting mad doesn't change anything - just builds up walls.

Sher said...

As someone who supports staff who support people affected by developmental disability, I'm shocked and disheartened at the frequency with which I hear that tone at work. I LOATHE the tone. Why would you speak to an adult in a manner that children find offensive. I am quickly coming to the conclusion that the view is that the people we support are considered less than people and it breaks my heart to say it. I've been doing this work for about 15 years and always, naively I'll admit, assumed that others work in the sector for the same reasons I do. I now understand that some people just go to work for the paycheck in the human services field just like every other. But the tone....that condescending, demeaning, honey-dripping, "there-but-for-the-grace-of-God-go-I" tone! It's time to lose it!

Sher said...

Those of us who work in the sector need to be the example, so let's start being that example. Model what you want to see.

Tamara said...

They did not really call you "fella", did they? That's awful! I think I'd have to respond to them in some snarky way, but applaud you for being polite while still letting them know you are capable. There are so many things going on in this post, but I think all the comments so far kind of missed what I took away from your blog this morning. Didn't you write on this whole disability hierarchy before? I know I read about it somewhere, and it hit on what I've been seeing as we kind of try to broaden our involvement outside of that kind of insular "down syndrome community".
You're certaily right that people with intellectual disabilities don't like - and don't deserve - to be treated with condescension anymore than anyone else, but they are. I think they are often treated as "less' or ignored by others in the disability community. But, even within the community of those with intellectual or developmental disabilities, I see hierarchies developing. It's interesting, but it's also frustrating. It seems like when you have "the look", you kind of end up near the bottom of the food chain, and get the pats on the head from anyone who thinks they or their child is - just a little slow, not re@arded. It's been a new frustration of mine in the last few years, but I love your last line ...
Others shouldn't other others.

Rachel in Idaho said...

Anonymous, I see where you're coming from and to a point I agree -- but a line must be drawn between being so confrontational it hurts efforts and being so "nice" that it doesn't do anything at all. People aren't going to know they are offending us if we never say anything at all on the subject. And that goes doubly for those whose disabilities are intellectual, who get even less credit for having brains than people with purely physical disabilities.

Oh, I hate that tone. And I hate the actions that go along with it. Don't get me started on head-patting...

Anonymous said...

Yes! Respectful assistance is discreet assistance that does not draw attention to the act of assisting. A couple of guys walking arm in arm caught my eye when I was waiting for my friend at the car park today. There was around a 25 year age gap and also a big culture gap- the older guy small, neat, grey, wearing smart sports gear and and conservative tinted glasses. The younger guy tall, gangly, tousled curly hair, uber cool jeans, studenty t shirt and jacket. As they walked past me the older guy’s mumblings and inattention to the path told me that the younger guy was assisting him- I guess I was seeing a support worker and client. But nothing about the younger guy told me that. i thought well done young man, THAT'S how our job should be done. Of course there was no need to say anything, it was just heartening to see.

Anonymous said...

Your post stuck in my head today. After leaving my bus today I did enter a shopping center with heavy doors that are hard to open. An elderly man was walking in front of me struggeling because half of his body was paralyzed. I hurried infront of him and I guess at first he thought I just wanted to walk faster. But I just wanted to open the two havy doors for him.
There was a little thank you from him and a little your welcome from me. But we both looked at each other because we knew...

And that was it. The right kind of help is given and taken naturally.


CapriUni said...

I admit: this is a sin that I've been guilty of in the past, and am trying to work myself through it into something better.

Not offering this as an excuse at all, but as an opening for understanding: As a child with cerebral palsy, I was someone the "Medical Establishment" assumed was "retarded" until I could prove otherwise... so my parents took me in to be tested at the hospital when I was two (this was in 1966). The nurse came in and rushed me in to the testing room where I was left to wait alone for the psychologist to come and test me...

Because I was two, and shy of strangers, I didn't say a single word to him, or answer any of his questions. ... and he marked down that I was "severely retarded" on my chart. Then, he called my mother in, to give her the bad news.

Lucky for me, she: a) had the spirit and wits to stand up to authority, and b) was of the "right" class and race that challenging authority was not held against her, or I very likely would have lived and died in the Land of the Long Corridor, and would not be here to write this reply to you.

So what I learned early (you have to be carefully taught) is that separating Myself from "Them" was a matter of personal survival. What I'm learning now (you have to teach yourself) is that the Authorities are wrong even about "Them," (not just me) and that the ability to truly understand has as little to with intellectual agility as it does with physical agility.

I am a work in progress.

Baba Yaga said...

Well said. Again.

Or, as if I'm not a real person. As Rachael said, though, I don't know how well well-meaning people understand any of those things. Which is a bit worrying.

Rachel in Idaho said...

Oh, I wanted to add -- what I mean by "people won't know" is that "people who use That Tone." Not everybody as in the entire non-disabled population!

The most hurtful things said and done to me have come from people who honestly mean well and have no idea how they're coming across. Open hostility bites, no doubt, but it's a lot easier to be openly upset about it. At least then you don't have to worry about how to educate them in a way that won't cause more hurt and offence.

An example of the well-meaning but WRONG -- it drives me NUTS that I still have to explain "midget" vs "dwarf" to people who still think those are MEDICAL TERMS. It's 2012, not 1912, people.

Ettina said...

Reminds me of how, while volunteering in this one gymnastics program that had both autistic and NT kids, often I could tell the autistic kids more easily from the adult interacting with them than from their own behavior. No matter how high functioning the kid was, they'd talk to the autistic kids in the 'ABA therapist voice' (an extremely condescending tone) while talking to NT kids in a tone that, though still less respectful than they'd be to an adult, was a lot closer to treating them as equal.

In the case of people who have receptive language issues, that tone *can* actually be helpful - research shows, for example, that babies enjoy being talked to in this tone, and are better able to understand speech if you use that tone. And several lower-functioning autistic kids in that program seemed to have a similar reaction, for example one boy could only understand simple sentences said in that tone. But if their receptive language is fine, or they have issues very different from a small child (such as being deaf, or a second-language speaker), then this tone isn't helpful at all.

And certainly, with the majority of the autistic kids in that program, you could've talked to them in a normal tone and they'd have understood you just fine.

Optimal Rhythms said...

Silent support is often so much more subtle and respectful. It also allows the individual room to be as independent as they can be. Least to most support is key. Respectful tones that presume competence should be the norm for all of us!

Anonymous said...

that tone haunts me daily, i may be a mite peculiar and brash, but this has developed as a result of inconsistent, negative interactions with adults, i work with pre-school age 2-5yo kids with developmental delay, autism, downes and spd mainly, these kids amaze and inspire me, to the point where almost daily, i learn things about myself that i wasnt taught at school, honesty, respect and most importantly the effect a collaborative, equal learning relationship has in relation to childrens autonomy and self concept, day a few years back, i will never forget or take for granted we(the class) were moving from out door play to morning tea inside, i said to 3 boys moving up the steps(after pack-away) 'thanx boys, awesome work' were on wash hands now, so we can have something to eat, one of the boys turned back and said..."were not boys XXXXX, remember were little brothers"..... the same boy then asked me was i hurt, because i was crying, his little friend(non verbal) touched my arm and said 'XXXXX sad'......after i explained i had happy tears, they talked as they ate about being happy and sad and 'sometimes really excited in the tummy'. .....autism, no empathy, innapropriate emotional response, inability to engage or interact socially was dismantled that day by honesty respect and positive self image.......each day before work(in my head) i thank those boys for inspiring me and giving me the confidence to believe im helping and not hurting people,..three 4/5 y.o boys taught me more that day than any adult has taught me my whole life :) tone is for those that use that tone.....