Wednesday, October 02, 2013

The Flow Past: Careful, there's a quiz at the end!

We travelled this week with the MV1 which is, for those who don't know it already, a purpose built vehicle for wheelchair users. I like it because it's a cool looking vehicle but I love it because I get to ride in comfort and bring along my power chair. Using this increases my mobility substantially. The thing about riding around in the MV1 is that it attracts a lot of attention. Really positive attention. Those driving by often can be seen turned around trying to see an insignia that tells them what kind of vehicle it is. It doesn't look like anything else on the road.

When parked, cars will pull up beside us and drivers  will roll down their windows to ask questions about the vehicle. Many know someone with a disability, some are married to people with disabilities, and they ask a lot of questions. What surprises me is that they as JOE a lot of questions. Oft times they will be parked beside med, in the passenger seat, sitting in my wheelchair, and they will look across me to talk to Joe about the comfort for wheelchair users. In every way they use the right language about people with disabilities, that's good, but they seem to think that JOE would know best how it feels for people with disabilities to ride in it.

I will never be confused for invisible.

Joe never has to say, 'Ask Dave,' when the question is about the experience of those with disabilities in the vehicle because, without prompting, I answer even though I'm seldom asked. There are questions that are unique to Joe, about the driving and the handling of the MV1, but most questions are about the fit of a wheelchair, the comfort for the passenger and such.And I feel I am uniquely qualified to answer those questions.

Some are surprised at me jumping into a conversation that is flowing by me, from driver on my right, to Joe as driver on my left. But I don't care if it seems that I'm either rude or pushy. It's my experience they are asking about then it's my voice they will hear. One person listened to me answer a question asked of Joe about how the ramp is to ride down, then, when I finished, looked back at Joe and re-asked the question. It was as if I needed a non-disabled stamp of approval and authenticity to be believed.

Lately I've been wondering if there is a subtext, another layer of meaning, to the purposeful exclusion of my voice from a conversation about my experiences. Why am I almost never invited in to a discussion about a mobility devise, for that's what the MV1 is, between two people who have no need of the device themselves. What is being said, one to the other - what message is being sent - why do my receptors not pick it up. These are otherwise nice seeming people, they are asking the right questions, they seem to be concerned about their wife, their husband, their son, there friend with a disability.

Are they looking for care provider to care provider contact?

Are they looking to interact with someone in like role?

Are they needing something from the interaction that I'm missing?

I don't know, what do you think?


Tamara said...

I really wish you should just ask the anyone else who does that on this trip. I'm sure you can ask it in a nice way - like after the conversation about the vehicle is over - so that they'd feel comfortable answering. I'd be interested in their responses because it makes no sense to me.

Anonymous said...

No clue, but if you figure it out let us know. Just yesterday I was in the grocery store with my husband and of course my guide dog. A woman in a wheelchair in line ahead of us asked my husband if dogs were allowed in the store. I was standing right there, could hear her and she knew it. Yet she asked my husband. So I don't think it's just nondisabled folks that do it.

Andrea S. said...

Not a clue. Just a note to say that I have sometimes been present when hearing people around me start talking about sign language ... without including me in the conversation. Usually I'm the only person present who is actually fluent in ASL, but all the questions go to the hearing person with me who signs just well enough that I can understand them. And often I don't even realize the conversation is going on until after it's over (because when I'm the lone deaf person in a group of predominantly hearing non-signers I'm usually left out). These infuriate me: It's bad enough to be left out of the conversation so much of the time, but when it impinges on something that clearly concerns me much more closely than anyone else ... ?!!!

Andrea S.

Anonymous said...

The answer is obvious: you have a visible disability, so you MUST be also mentally challenged.

So anything you say is automatically going to need verification. Because you can't possibly be the final authority - because of your looks, you are automatically disqualified.

It is extremely rude of them to assume you have other things 'wrong' with you because you are disabled. If there were caretaker to caretaker questions, you would be able to tell from the content.

Not nice of ME to assume about people I haven't even met, but what other interpretation is there?

I'm sorry you have to undergo one MORE layer of being seen as 'other': having to prove you're NOT mentally handicapped. If it were me - and may well be some day - I would be furious.

PS Is there any way YOU could be the driver? That would be cool. I wonder if it would help.

Dave Hingsburger said...

Alicia, this happens to people with intellectual disabilities too. Care providers are asked to verify the 'correctness' even of a lunch order or something mundane. It strikes me that this is about how people see all with disabilities not just some with disabilities. This version of the MV1 I am not able to drive, I understand that the next verison I will be able to ...

CL said...

I think it's that they are thinking of themselves as care providers, and they want advice from another care provider. Even when they're asking about the wheelchair user's comfort, they are probably imagining themselves benevolently providing a good transportation option for their loved one -- not letting the actual wheelchair user make the decision.

In a way, it makes sense that they want to connect with someone (whom they perceive as being) in their own position. But it's rude to leave you out of the conversation, and to ask Joe to verify your opinions. It also makes me think that if they're interested in this vehicle, they would make the decision themselves rather than consulting with the wheelchair user in their lives.

Maggie said...

I want to be careful not to engage in 'derailing' when I mention that this happens in non-disability contexts, too; clearly there is an extra helping of some form of able-ism at work on top of the 'usual' thing.

I think the 'caregiver-to-caregiver' interaction might be a special case of 'like-wants-to-talk-to-like'. As when a woman at the theater leans across the man with me to ask me a question about the tickets.

Sometimes it seems to be 'I don't want to bother Mister Important with my trivial Feminine Question'; other times it seems to be 'you look enough like me so I think you'll have the right kind of answer.'

But it's annoying and dismissive of whoever's being overlooked, regardless of motivation.

(And sometimes I sure would like to know their motivation, as in 'do I look like the same kind of "##$! you're being?')

wendy said...

I was once at a conference with a woman I knew fairly well who was blind. During some down time we were sitting by a fireplace, chatting. Another conference goer approached, looked at my companion and then at me, gestured on his own cheek trying to indicate to me that her face was getting red from the heat. He clearly wanted to know if she was alright. I was stunned. I, in turn, made a palm up sweeping gesture going from his directin to hers, intended to invite him to pose the question to the woman herself. I also made a very annoyed face. The man walked away without asking her.

As soon as he was gone I related the entire exchange to my companion who shook her head. We both marvelled that this person didn't have the sense to realize that she was fully capable of moving away from a source of heat if it was bothering her.

That was many, many years ago. Now, I think, I would simply speak in response to the person gesturing so that the woman would have the opportunity to answer for herself.

People make ridiculous assumptions
about people with disabilities. I once had a member of the community comment that an individual whose wheelchair I was pushing was 'in a coma'. This was made all the more incredible by the fact that the individual was, in fact, looking right at the woman and smiling from ear to ear.

I can't understand it, much less explain it.

ettina said...

It wouldn't OK even if he was mentally challenged. I mean, if it's something they're likely not to know about, sure, but a person who has enough cognitive ability to answer your questions will have enough cognitive ability to decide if their wheelchair fits comfortably. Certainly, they'll know more about this than a carer does, unless the carer's taken a turn sitting in the car in a wheelchair.

Anonymous said...

I also wondered if that was it (the assumption that you also have an intellectual disability, and that you would therefore be unable to answer these questions). I wonder if people are worried in case they ask you a question and you are unable to answer, leaving them feeling potentially awkward and uncomfortable, therefore they avoid it by asking Joe.

It sounds like all of the questions are really about your experience, so it couldn't be that they were wanting his perspective e.g. how easy is it to support someone getting in and out of the vehicle?

Sorry that you experience this, I can imagine it would feel rubbish, especially for people who don't have your confidence to speak up for themselves in these situations

Anonymous said...

I agree with liejabberings - it is an assumption. Perhaps the person in the chair is unable to answer, perhaps they have a mental handicap. Why take a chance of embarrassing that person? Just ask the driver. I'm sure that would change if you were driving the vehicle. Ignorance, lack of educations and assumptions. The perfect storm for misunderstanding and hurt feelings.

I must admit - there have been times when addressing those with a disability I've been snapped at by their caregiver. "They can't talk to you" or "They don't understand you - why do you think I'm here??". It does make you hesitate. It is not right - but it does happen.


clairesmum said...

How easy it is to to forget that if I assume something, I often end up making an ass of u and me!
Not elegant, but pithy, and a way for me to remind myself not to do this! I'm sure I still screw up, but I just keep trying to pay attention....human nature is very illogical!

B. said...

Been on the receiving end like this all my life so am interested in the opinions here. I thought normals just dismissed me as a moron, or child-like, etc. Do you think they are scared of visible differences?

Anonymous said...

I agree with Tamara that I'd love it if you asked. I want to know, too.

The other thing I'd like to see would be Joe, when asked, responding (fake) innocently, "Oh, I'm sorry, I didn't realize you assumed I was using a wheelchair. This is actually a built-in seat, and I entered through the front door on the left. I've never even ridden in this vehicle sitting in a wheelchair, so I'm not really qualified to comment on those areas."

I would hope that would make a point that the person would remember.