Wednesday, September 14, 2011

A Really Honest Moment from Me

Here's an example:

We were going into the movie theatre to see a live broadcast of 'Last Night of The Proms' and were arriving with several other people. We got to the door of the theatre and Joe opened a door for me to go through. A woman rushed ahead and opened the door beside it, ostensibly to give me more room to get through. Now, here's the thing, the second door opened made no difference. Each door was separated by a divider. So she was holding open a completely separate door and doing so with great purpose. I said, 'It's OK, I can't use both doors.' She smiled at me looking very pleased - as if she was looking in at herself doing something wonderful for someone in a wheelchair rather than out at me in the actual physical world.

Here's an example:

I am checking out a room that I'm going to be speaking in. The woman from the hotel comes in to talk to me. I am sitting looking at the room. She stands behind me and begins to speak, I turn round in my wheelchair to see her. She doesn't notice that she is talking to Joe, not me, and yet I am the speaker. I have to ask her to come round front so I can actually see her when we speak. She is one of thousands who speak to me behind me, one of thousands that I have to ask to come round front for me to be able to see. She does as I ask and has a smile on her face, as if she is looking in at herself doing something special to enable a person with a disability to have a face to face conversation rather than out at the world where I have to instruct someone in how to simply talk to me as a regular person.

Here's an example:

A store clerk, answering a question, puts his hand on the handle on the back of my wheelchair, I can feel the side of his hand touching my back. He doesn't seem to notice. I ask him to please not put his hand there, that I prefer people not touch my chair when they are talking with me. He quickly lets go and apologizes. He stands there continuing the conversation with a look on his face that makes me think that he is looking in at himself being patient with and 'touchy' person with a disability, rather than out at the world wherein 'touch' is 'touch' and 'space' is 'space'.

It's tiresome to always have to be instructing others in the world about how to simply be with me as a person with a disability. It's tiresome to always be less important in the actual world than in the inner world of 'I'm special for being with, listening to, or following the direction of a person with a disability'. Tiresome.

I wonder do others feel the same?

Do others simply tire of having to ask people to be in the real world, in real time, with real respect?

Because, honestly, I do.


CapriUni said...

Oh, yes. So tiresome. So tiring.

And while it's true that each moment I take to remind someone else that I'm a human, not a piece of furniture really only takes a moment, that's a moment not spent talking about the subject at hand.

And they all add up.

Anonymous said...

The wheeliecrone says -
Oh Dave,
Of course it's tedious. Tiring. Annoying.
That "Look at me! I'm being kind to a person with a disability!" person, who is performing Random Acts of Kindness that I don't want or need. People who touch or lean on my wheelchair. People who speak only to a person standing near me (whether I happen to know that person or not).
All these people are a daily part of my life.

However, there are a lot of people who simply treat me like a person. People who willingly give me the assistance I need when I ask for it. People who speak directly to me and appear to believe that I am capable of making decisions. They are the people who help me believe that you and I and all the others who advocate for people with disabilities are making some progress.

I get up every morning and pick up my teaspoon and dig away at the mountain of fear and ignorance that surrounds the subject of disability. I wish I had something bigger than a teaspoon, I wish I had at least a front-end loader, but a teaspoon is what I have.

See you tomorrow morning, Dave, down at the mountain! I'm the one with purple hair!

Glee said...

Yes and they have the affront to be peeved when you ask them to be sensible...

Andrea S. said...

YES to this!

And also, YES to what the other people here have said, including what wheeliecrone has said.

As a walking Deaf person with attention deficit disorder, and various other conditions ... I experience these moments differently from you do as a large man in a wheelchair, but my experiences are near enough I can relate.

Witchy said...

I also agree with everyone here; to add, I get the "but you're so young!" comment, which makes me feel like I should be doing a jig for them instead of wheeling away as fast as I can. Huh. Maybe I'll just do that instead of trying to justify myself to them.
I need rocket boosters on my chair, hehe.

Hannah Ensor said...

Absolutely yes! And even more marked when someone needlessly holds a door open that I could hold myself, and stands there, oh so pleased that they are oh so helpful. Except in reality I cannot get through the door anymore because THEY ARE STANDING IN THE WAY. sorry for shouting.

I try to give clear, assertive instruction with a smile, but sometimes it is really hard.

Rachel said...

Oh my yes. Soooo annoying.

The one that annoys me the most is people patting my head. I don't care if I'm the height of your seven-year-old. Hands to yourselves, people! I've had people pat my head, I ask them not to, and they try to PAT IT AGAIN as an apology!!!!

It doesn't happen often but I find it deeply upsetting.

Ashley's Mom said...

Yes, yes, yes

lillytigre said...

Omg yes, when I pointed that out to some one yesterday she said she felt it was my "responsibility" to educate a kid who not yet 5, has taken to calling me that R word because I walk differently then he does. After one try I figure things like that are not my issue anymore. When I was younger I kept trying and often ended up being angry. Who needs that

Andrea S. said...


Ooohh, YES, I HATE when I try to patiently ask someone to adjust the way they are behaving only to have them do it AGAIN ...

One time I had to alert a hearing person that I had no hope of lipreading them when they kept looking away from me, PLEASE LOOK AT ME WHEN YOU SPEAK. But she kept right on doing it again and again. So I pinned her down to ask if she understood what I was asking her to do. And she said, yes, I wanted her to look at me when she spoke. And. She looked away AGAIN. While still saying this sentence!

It amazes me the profound disconnect some people seem to have between what they say (or what they think they're hearing others say to them) and what they actually do ....

Of course most people aren't nearly this bad. But when I run into the very few who are, then yes I find it very upsetting too.

Anonymous said...

My favorite is when someone wants to help out by pushing the cart for a man who needs the cart to navigate the store. Then they are dismayed that the accompanying staff person is not helping by pushing the cart! I'm thinking the person supported prefers to get around the store to falling in the aisle while a helper pushes the cart.

Louise said...

And sometimes they're even more obvious and ridiculous: I've lost track of how many times I have to say to people on buses 'Please don't let your rucksack bang on my friend's head' (my friend can't move his head out of the way, and can't speak to ask this for himself' - but really, WHY would anyone not be able to work this out for themselves??? It's very clear from his specialised wheelchair that he's not able to move out of their way, no room for misunderstanding. Just pure and utter stupidity. At best.

Anonymous said...

YES YES YES!!!I honestly do to for many many reasons. People just dont think or care to....

ivanova said...

Crumbs, I have done a variant of that door thing. Spatial relations not being my strong point. I hope without the weird elated expression, but maybe that too. Well, I'm not too old to learn! Thanks for this post! : )

Anonymous said...

OMG, yes, it is very very annoying to have to remind people on a daily/realtime basis ... especially when it's the people who are supposedly "trained" and actually paid to support you.

I'm not in a wheelchair; and at present only know a couple friends who use one; but, I would think that the chair is like part of your body ... so if I were to touch your chair ... I would think it is comparable to physically touching you. In my opinion, touching within the boundaries of someone's personal space, demands a certain level of relationship ... so, I'm sorry this happens to you, and to many others; but, keep responding and reacting immediately .. and hopefully the point will sink-in for these people at some point. I'd be scared for the people who don't have the courage to say anything or the knowledge that they have a right to their personal space, period.

Today, my son and I were at the grocery store ... and my son's very happy and friendly (and he's quite naive too) and loves Star Trek ... so as we're going along, he wishes people "live long and prosper" and shows the vulcan hand greeting. Usually people are fairly kind and accepting; but, today, wow, this man kept saying how nuts he was (and he was saying it directly to my son) over and over. Anyways ... some people will never ever get it. Although it is not right .. and we can get po'd ... sometimes it's better just to say to heck with it, and leave them to their own ignorance. Of course, at that point, I was more concerned for what my son was thinking and feeding his own mind with self-talk .. as he usually believes that others are always right, better, more deserved, etc. and that he's lower on the totem pole.

Thanks for being real Dave.
~ Elizabeth & Andrew

Noisyworld said...

I don't understand why people would touch your wheelchair because I would never touch a chair someone else was using, in (almost) any circumstance, but then some people have no concept of personal space for anybody :(
My deaf and Deaf friends have told me so many stories of people who look anywhere than at them when talking- completely ridiculous that's just common manners!
Which like common-sense seems to becoming less common :/

Rachel said...

Anonymous, if I met your son and he did the Vulcan greeting I'd greet him right back in the same way. And I'd think well of his parents for exposing him to the awesomeness that is Trek. :D

I do want to say most people are excellent. Most of the time this sort of thing isn't a big issue. It's just that when the issue does loom, it's freakin' huge. And it's tiresome because it comes up over and over and over again if you're on the planet long enough.

I am very shy about making eye contact but if I were talking to a Deaf person I would make the effort. Honestly, some people!

Anonymous said...

My pet peeve (along with the ones you mention) is people who don't want to "bother" you to move and climb right over my wheelchair. And they all say the same thing: "No Problem". Yes damit, it IS a problem. Don't touch me! Don't touch my chair.


Anonymous said...

Rachel, Andrew said thanks. He wanted to make you his friend too; but, I don't have an official google account.

You know, those of you who use a wheelchair, it would be neat if you could put a snowplow attachment on the front, like trains ... so you could just bulldoze through when you encounter rude ignorant people ... or have some needle work, or something like that in your lap, when someone's literally climbing over you .. oops, sorry ...

I know I sound terrible right now; and although I haven't had some of these specific problems ... ignorance, and rude people seem to be commonplace ... and sometimes it would be nice to not be such the polite and politically correct person ... and do something like the characters in Calvin and Hobbes .... I think my parents are very fortunate that I didn't start thinking of these things until later in life (when I was an adult and not living with them) (lol).

Take care,

L said...

I've been using a powerchair of late, and I am so, so, so tired of people patting me on the shoulder.


Haddayr said...

Yes. I get SO tired of it, and it is so dehumanizing and enraging. Maybe just a little the first time, but by the dozenth? Oh, exponentially so.