Monday, November 25, 2013

"I'm Not the Queen": Rulebooks and Disability

There are some people who, nicely, really try to follow some rules about 'interacting with the disabled' and in so doing make a real effort to demonstrate their respect for me as a person. I appreciate that. I really do. But I've found that interactions that require a 'real effort' at the start, require 'real effort' all the way through. One of those rules, and let me state I've never seen these 'rules,' apparently is that communications should always be at eye level. Those that have been taught this, or read this somewhere, often immediately bend down or kneel down to talk with me. We are, then, eye to eye, but we are also then two people who are demonstrating the extreme effort that it takes to 'please' the needs of someone with a disability.

When this happens I always say, quietly, 'Please, just stand up.' Often, of course the other person doesn't. They splutter on about 'not minding' or 'wanting to communicate as equals.' I ask them again to 'please stand,' I thank them for their concern but insist on them resuming a standing position. It's usually then that explain that they've been told/trained/read somewhere that this is what disabled people prefer. I try to explain that there is no such thing as 'disabled people prefer.' In the same way as there is no 'women all like' or 'third born Lithuanians all like' ... there is no such thing as a 'way to talk to those with physical disabilities.' There are things you don't do - shout at us, patronize us - but the showing of respect, well, we all want different things. In fact I can imagine a disabled person reading this and howling protest because they like the effort and the eye contact. No contest, their right is to have the right kind of interaction for them.

For me. I'd prefer that, when I ask you to stand, that you stand. For me, I don't want you to get down to me, I don't want you to talk down to me - take care of that and we're good. I don't want you to make an effort to 'communicate as equals' because we are equals standing or kneeling is irrelevant to that fact. The rule book needs to begin with 'there is no rule book for communicating with someone with a disability in the same way there is no rule book for any group. the best rule to follow is the one you follow for everyone else - learn, through interactions, what works for you and the other person.' There done.

I bring this up because we went to the movies yesterday with Mike, Marissa and the kids. We hadn't seen everyone for a while and we'd picked up the kids their annual advent calenders. The ones that have chocolate treats behind each door. We love getting them for the girls because, while they love the gift, they express such extreme emotions about having to wait 'forever' for December 1st to start. And then for all those days those candies wait torturing them with anticipation. Fun!? Wow.

Anyways, we chatted in the lobby for a while waiting for the movie to start and we chatted again before we all left. Everyone knows that I prefer we all chat like a group of people chat. I don't want each of them to pop down when they speak to me and pop back up when someone else says something. I think we'd look silly. We just talk. I noticed that there was another wheelchair user who was there and who was being spoken to by someone who had 'followed the rule' and knelt down. Again, I know this is done out of an effort to demonstrate respect and inclusion, but as the fellow speaking to the wheelchair user was a bit older, it looked quite painful. I kept hearing the 'it's OK, just stand up, please stand up.' When that didn't work, I heard, 'I'm not the queen you do not need to kneel before me.' That worked, they both laughed and the older man got back up.

I don't know what these rules are or who wrote them - but I think that respect begins with a mutual determination of what's preferred and what works. I do have some rules for interacting with me - but they are just mine - an example would be, please move around, or give me time to turn around, so that I can see you when you are speaking with me. I don't like conversations that happen over my shoulder, I do like to see faces. Now, THAT'S ME, others may not care.

So, how to you interact with disabled people? I sure as hell don't know. I do know how you best interact with me, and here's the thing, you know how others best interact with you. We all, regardless of difference or disability, have preferences. One of the joys of getting to know people is learning how to be in sync with each others.

But for now - you need not kneel before me.


Anonymous said...

Such a wise and right post. But it is not only restricted to a disabled person... I'snt it?! :-)


Moose said...

I think a sizable chunk of the answer is - don't assume. All it can take is a simple question, "Would it be easier for you if I...?" or "Would you prefer if I...?"

This has been a bad year for me, related to being disabled, all because of people making assumptions. Why is communication so hard? Why do people assume what they see in front of them without taking a moment to ask?

Anonymous said...


I hate to veer off topic, but I wanted to ask about something mildly troubling that happened at the end of my day today. I think this is a good place to ask about it, but I don't want to derail the conversation. Feel free to ask me to wait my turn!
I'm a fourth-grade teacher, and the end of my day can be rather hectic as I herd 22 students out the door to wait for their buses. Today, one of my charges, a very sweet, affable boy with hardly a mean bone in his body, let his backpack slip down his shoulders until it bumped him in the backside each time he took a step. Playing with this, he shuffled forward with an exaggerated limp. "I'm disabled!" he cried gleefully with each step, "I need patience!"
The rest of my class made it down the stairs unmonitored, I admit, as I tried to talk to my giggling student. "Is it your intention to make fun of people with a disability?" I asked in my best, 'there's-no-wrong-answer' teacher-voice.
"No," he replied between steps. "It's true! Disabled people do need patience!"
As I grappled with the idea that we all (particularly elementary school teachers at the end of a Monday afternoon) need patience, he darted down the stairs, backpack flapping, and headed for his bus line.
So...what do I do with this? I don't plan to bring it up tomorrow, as the memory of 4th grade boys is not to be envied by goldfish, but I want to have something in my bag of tricks when something like this happens again, and I wouldn't be averse to bringing up the topic during the anti-bullying lessons that I teach regularly. Any thoughts?


Katja said...

I'm having trouble with this one. Are you assuming that everyone who takes up a position to speak to you in which your heads are on roughly the same plane is doing so out of misguided allegiance to some rule of disability etiquette? Are you comfortable telling people to stand up who might prefer to sit or do something else?

As a wheelchair user, I find it easier not to crane my neck up at my conversation partner, which just goes to confirm that everyone doesn't want/need the same thing. Frequently if the conversation gets longer, I'll suggest that we find a place to keep talking where the other person can sit down, too.

Now, people popping up and down during a group conversation as you describe, that's just weird as heck!

B. said...

Gosh, thanks for the laugh. If that ever happens to me (I am a very short person) I may laugh again remembering your blog but I shall know where the kneeling thing comes from.

Dave Hingsburger said...

Katja: I never ask someone who sits with me to stand up, that would be odd to the extreme. I'm talking about the kneeling or the bending over to get their face level. I don't need it or want it. That's the point 'I' don't want it. I'm trying to say that there is no 'one size fits all' approach to interacting with people with disabilities or any other group of people.

BenefitScroungingScum said...

As ever, really interesting post. I also usually explain to people they don't have to kneel or sit...with one exception. I'm building quite the collection of photos of powerful politicians kneeling next to me on the scooter. I think it's good for them to be seen kneeling next to a disabled person behaving like a Queen ;) Best wishes, Kaliya