Thursday, September 13, 2012

Scissors

I say "Hello" or "Good Morning" to everyone who gets on the bus with me in the morning, or to those who are already on the bus when I get on. I don't say this to alert you to the fact that I am an extraordinarily warm and welcoming person - I'm more shy than welcoming by far. But, I believe in a certain kind of civility and have signed the social contract that asks all of us to behave as if we were part of a community that cares. This makes Joe, who is also a signatory, and I seem very odd to some of the people in the apartment building we live in, some who actively avoid riding in the elevator with us because they hate being in a small room with two people who say "Hello" or "How are you?" We are socially outcast for being socially ept.

But onwards to the story.

I greet people on the bus. Most often people greet me back and we ride in silence. Sometimes people take the greeting as an invitation to talk and we chat a bit. Nothing extraordinary comes of civility other than a continuance of civility but that's enough for me. Some, like my elevator riding fellow cave dwellers, seem to fear that saying hello back would the the first step towards sex, or dinner out, or, god forbid, friendship and look pointedly away. I'm good with that, I've done my duty and I'm equally good at sitting silently looking out the window or playing 'Word Mole' on my phone. But most, smile, or nod, or say hello back and that's the end of that.

But some mornings, others are on the bus or are brought on the bus, people with more significant disabilities who don't communicate in the traditional way. I greet them too. Sometimes I'm greeted back with a look, with a smile or with a little tiny wave. Sometimes, maybe even most times, there is no observable response. Most often if a response comes its from a staff or someone assisting the person greeted. "She can't talk." "He can't hear you." "She's too low functioning to understand." "He's noncommunitive." Most often I'm told, "You don't have to do that, she doesn't understand (he can't answer back)." I imagine that the support worker feels like they are doing a favour, explaining away the silence that greets my "Good Morning."

But I wonder why they feel the need to speak at all. I greeted them too, usually acknowledge, and now they are trying to brush away my greeting to the person they support.  I wonder what I am being told. Firstly, I can see that the individuals have complex disabilities. I wonder how the individual feels being summed up to a stranger with words that limit. I wonder if anyone ever thinks that maybe even if the person can't do what is said they can't do that maybe they can be socially more than someone who "doesn't." The existence of a disability, even a significant one doesn't make one disappear off a bus, doesn't cut one out of a social fabric. The expectation of welcome that comes with humanity still exists. Staff taking scissors and attempting to cut the meagre strings of a greeting by a stranger might leave the person completely socially adrift. I mean, it's just "Hello."

So.

I say "Hello" or "Good Morning" to everyone on the bus.

Everyone.

Because in my world. All means all.

20 comments:

Anonymous said...

Yes, and even though they might not answer or greet back they w i l l know that you included them!

Julia

joanne said...

in my world, it's ok for people to stop and talk to owners and their pets (cats, dogs...not sure about gummy bears) and say "hello" knowing full well the animal will not communicate back. Too bad we feel we need to make excuses for people and aren't more sensitive to non verbal communication.

liz said...

Yes. YES.

Anonymous said...

Wow, joanne--that's right.

But you know what? Not only does the minder usually enjoy that attention and interaction, the minder ENCOURAGES it further. Such as, "Oh, we're wearing our new collar--what do you think?" or "We're so happy to be out and about this glorious day!"

Dave, what would you think if one of the support people for the completely non-communicative person responded in such a fashion, ie, tried to encourage further interaction from you toward the individual?

Sue

Anonymous said...

Oh dear, please don't anyone misunderstand me. I am NOT equating non-communicative disabled persons with pets! As I re-read my previous response, it looks exactly like that, and I didn't mean to make it seem so. I was only commenting on the rightness of Joanne's observation, and then made the connection in my mind to other instances where support people comment for the individual they're supporting.

It would have been much better if my Eureka moment had been:

"People often converse with newborns, even though they cannot communicate back. Their mother, however, encourages such interaction further by saying things like,"We're off for our first visit to the park!" or "We're wearing our new onesie from Grammy!"

Better? I hope? I'm so sorry!
There's no recall and delete function with these comments.

I'll just shut up now, Sue

Glee said...

Hey Sue, you are spot on and just added to the picture.

We went from pets, yep that was good and then you added with the talking for pets and then babies and talking for babies. Much food for thought.

talking for animals and babies is very accepted because the listeners know that this is a person besotted with their pet or baby and it is sweet or sickening depending on the listeners opinion.

Generally I don't have a problem with that sort of "talking for".

But then I thought about talking for a disabled person and found it a struggle. It seems fine and also yucky. And that's as far as I have got. I will have to ponder more.

Dave, ableoids cripple us more than any other thing. We are like a prize they can hold up to prove how normal they are. Some will say that is horrible and extremely cynical. Yes I hate it too. I believe that this sort of ableoid behaviour and attitude is sub conscious to most of them and therefore they deny it if questioned. They have been conditioned for centuries and they don't know what they do.

I have had 56 yrs of being subjected to and observing such stuff and it has taken me quite a while to realise this. Ableoids are highly insulted when I carefully explain this concept. And I understand their insult. It's shocking and unbelievable. Just like racism is/was, or sexism. It takes many generations to stamp out discrimination and prejudice and it will take longer for crips cos many of us cannot defend ourselves so practices and attitudes remain and are often reinforced ie "I am good cos I work with people with disability" and their family, friends and anyone else will reinforce that saintliness. It is irrelevant whether that person is doing a good job or not.

cheers.

Anonymous said...

This is absolutely awful:
Most often if a response comes its from a staff or someone assisting the person greeted. "She can't talk." "He can't hear you." "She's too low functioning to understand." "He's noncommunitive." Most often I'm told, "You don't have to do that, she doesn't understand (he can't answer back)."
Who supports, employs, supervises, trains these people? How can they do the job and not know this is wrong Wrong WRONG? I think where I am, even if someone was minded to say this, they would know not to, that it's not acceptable even if they don't see it like I do that it is just WRONG!

Anonymous said...

Sadly I would call it a widespread problem. The last Anonymous commentor asked who trains and supervises these staff people....I am one of them...ME, ME and every person who has any kind of disability (if the staff have an open mind). I was recently at a memorial service for one of our young ladies, she passed away a year ago. We were planting a memorial tree. I approached one of her housemates a young lady of 23 (she lives with Autism and it does severly limit her ability to express herself with words, but I KNOW she has more receptive skills than many of the staff at this house). I asked her if she wanted to help put some dirt into the tree to help remember "Mary". My own staff looked at me and said she doesn't understand any of this. The young lady with Autism laughed and flicked her fingers at him, took my hand and went to the tree, she shoveled several trowels full of dirt into the base of the tree, looked into the sky said "Mary gone, bye bye, stars."
I guess she told him, I said nothing. I may have had a smug look on my face.
Have a great day.
Donna

Rachel said...

I have a son who is nonverbal, and in social situations where he is unsure of himself, he's often not very interactive. I understand the caregiver's impulse to say *something* -- it feels rude not to respond to the "hello". We've had times when someone will try to engage my son, and will persist to the point where he is very uncomfortable, so I will say something to the effect that "Daniel uses his his eyes to say hello" or "I'm sorry his voice output computer is out of battery. He's learning to use a computer to communicate with us."

Do you feel that is respectful of him and his privacy, but at the same time completing that social contract with strangers?

I do think that for the most part, parents and carers want to "do it right" so to speak, but sometimes finding the right approach is challenging for us. Thinking it through carefully -- that's why I love this blog.

Rachel said...

I have a son who is nonverbal, and in social situations where he is unsure of himself, he's often not very interactive. I understand the caregiver's impulse to say *something* -- it feels rude not to respond to the "hello". We've had times when someone will try to engage my son, and will persist to the point where he is very uncomfortable, so I will say something to the effect that "Daniel uses his his eyes to say hello" or "I'm sorry his voice output computer is out of battery. He's learning to use a computer to communicate with us."

Do you feel that is respectful of him and his privacy, but at the same time completing that social contract with strangers?

I do think that for the most part, parents and carers want to "do it right" so to speak, but sometimes finding the right approach is challenging for us. Thinking it through carefully -- that's why I love this blog.

Ettina said...

I guess from Rachel's comment I can see one reason why people might do that. Personally, I think Rachel has a good approach - emphasizing what he *can* do (communicate with his eyes or with a computer) and not just what he can't.

I remember a related issue I had as a volunteer, for a young woman who could speak but often noncommunicatively. One of her common phrases was 'go home', and she'd run up to people, get in their face and say 'go home' to them. People who knew her knew that 'go home' didn't really mean she wanted them to go home, it was just something she said. But when she met someone for the first time, they'd look a bit uncomfortable at her greeting. I was never quite sure how to explain to them what it meant for her to say 'go home'.

wendy said...

Donna,
Your story reminded me of a situation years ago with an individual who was non-verbal. I worked in a group where this woman, "Jane" lived. Another woman who also lived in the home, "Mary", passed away suddenly and unexpectedly. We were unsure how much other residents in the home would understand. None of them had any formal means of communication. We weren't sure how much they would understand but we told them anyway.
Later that day Jane was found rolling through the house in her wheelchair using one hand to push her chair and the other to carry and look at a picture of Mary that she had picked up off an end table. The picture had been there for months. Jane had never picked it up or shown any interest in it before. That evening Jane tried to climb into Mary's bed. When Mary and Jane were children, in the same group home, Jane would climb in bed with Mary and cuddle up with her. She hadn't done it in years, though. I learned that day to never make assumptions about what will or won't be understood by someone with limited communication skills.

Colleen said...

Dear Dave:

Your post made me think of Victor Frankl. Common courtesy is rare in our society and you and Joe have decided to practice common courtesy. One way you do that is to greet people regardless of the responses of staff. You choose your own attitude.

"Everything can be taken from a man or a woman but one thing: the last of human freedoms to choose one's attitude in any given set of circumstances, to choose one's own way." (Viktor E. Frankl)

It may sound a bit melodramatic but I do think that it is the seemingly ordinary things that often make a difference.

Colleen

Anonymous said...

Seems like there are two issues here. One - civility and politeness. Surely it is your choice (and Joe's) to say hello to any and all you choose. And I too mourn the apparent passing of this simple acknowledgement that we are all on the same path - and that includes elevators!

The second issue seems to be around speaking for those that perhaps can't speak for themselves. If the person is known - the subtle head or hand movements may speak volumes - but so often the person attempting "communication", which to them is verbal, has little understanding, and worse patience.

I have witnessed a determined gentleman trying to coax and hi out of a young person - who obviously was unable to answer. I was uncomfortable that the care person did not give a response and save the person from badgering.

I love the answers Rachel gave. Informative, positive and helpful for all concerned.

Of course, on the bus - the care person may not realize YOUR potential. Assumptions gone bad.

Anonymous said...

Different anonymous here.

This is an important and insightful discussion. Thank you to all of you.

But I have to ask Dave: Just out of curiosity, what does the title of the post - "scissors" - have to do with anything?

Anonymous said...

To anon of 2:51 - read the second to last sentance of post.

"Staff taking scissors and attempting to cut the meagre strings of a greeting by a stranger might leave the person completely socially adrift."

Bubbles said...

Unfortunately;this is a skill you sometimes cannot train.... I remember a time years ago while working in a residential respite program. There was a a new staff... we had a moment of down time/quiet, which was rare. We had a student working for us and I happened upon her sitting in the living room flipping through the television channels while sitting next to one of the residents. I said to her "you know, even though she is uable to talk, she does understand your tone and when you are talking to her or not!" She looked at me while I was speaking to her and then nodded in agreement and turned her head back to the television without saying a word! Myself and the little ceased to exist I guess! Now that being said... I hope that staff has grown up and learned better ways... I worry however that it is unlikely! There needs to be more psychological screening when hiring people in these positions. I have seen it time after time, there isn't much management can do after they have hired someone. Basically, in order to get rid of a staff, they have to seriously break the rules or blatently abuse someone. Most agencies have a link of some kind to clinical support for the clients,it would be nice to see them use it in hiring!!!!

Louise said...

In my house we have a clear guideline around this, taken from the excellent work by Caroline Allen of Orchard Hill College (UK) for people with very complex disabilities.

Always address the person directly, whether or not they are able to answer you (or understand you, but we also learn and teach never to make assumptions about that one). If the person is asked a direct question that they can't answer, the support person should answer with them: 'You were at college today, weren't you, Kate?'.

We have a definite rule on never talking about people while they are there, only to them or with them. And I'm glad to say I've never heard anyone, no matter how insensitive, say 'You don't understand, do you, Kate?'.

When people greet my foster son and me, I respond to my own greeting, and smile to acknowledge their greeting to him, on the grounds that if they get some feedback they can recognise they're more likely to do it again.

Shan said...

I must say I don't particularly like being called an ableoid.

I just needed to mention that, as it seems a lot of name-calling gets started because people who are bothered by it don't speak up.

Anonymous said...

hi dave,
I'm a long time reader, first time commenter. i enjoy your blog very much. just wanted to comment on your characterization of the 'socially inept' people in your building. while i have no doubt that many of the people who treat you and joe as outcasts are being rude, i did want to point out that some of the inept people might have issues that make even saying 'hi', difficult. i have been diagnosed with non-verbal learning disability (which means i have issues with non-verbal skills- my verbal abilities are relatively high), as well as co-morbid generalized anxiety disorder and depression. this means that i sometimes find conversations with strangers very stressful as people with nlvd often have a hard time picking up on body language and non-verbal social cues, and if i'm having a bad anxiety/depression day, it makes interactions more difficult because i'm concentrating on not freaking out, or so exhausted i can hardly stand. i'm fortunate in that i do have some social know-how and can read some body language, but it did take a long time (i was definitely a 'weird kid')and a lot of work to get there. this is definitely also an issue that can wax and wane- i've worked retail in the past and had times where i loved my job, and other times where the idea of going into work caused a panic attack. (and yes, there is irony here working as a salesperson and having social anxiety issues. i hated it when my job forced me to aggressively greet and interact with customers- the low key stores i worked at were much more comfortable for everyone)like i said, i'm sure that many of the people who don't want to talk are rude or prejudiced. but there are those of us with invisible disabilities who can have difficulties with casual interaction. i hope i haven't been rude here it's not my intention- but i did want to offer another perspective.
i did find the rest of your post interesting and thought provoking- i definitely agree with your inclusivity clause.

k.