Sunday, July 13, 2008

List Mania

Well I mentioned it yesterday, so here it is today. These are the 12 weird things that happen to people who are wheelchair users. OK, let's be more honest, here are the 12 weird things that happen to ME in a wheelchair. I know I don't speak for all. I think there's lists to be done for those who have other kinds of disabilities. I think there's even lists for those who are parents or care providers. But here's my list .... The Dirty Dozen ...

12) Pardon, Pardon, Could You Please Speak Up?

I sat down in a wheelchair and suddenly I lost my ability to hear. People actually, sometimes, even yell at me. Others enunciate really really clearly. Or speak so slowly that I lose the meaning of their words. Have you ever noticed how funny speech looks when it's being done in slow motion. I have. Often.

11) Sexlessness

I was buying a package of condoms a few days ago and the clerk said to me, "What do you use these for?" I calmly said, "F#cking" and placed them on the counter. Really, can you believe that? Now I don't want to tell you that I was actually buying them for use in a sex education class, because that answer would have not been quite as much fun. It's weird how people, who used to be shocked by Joe's and my relationship, are now quite convinced that he's my 'carer', my 'staff'. Like suddenly there is a way that they can explain our relationship in their heads that make all the discomfort go away. I'm willing to bet every single disabled person has a story to tell about this one.

10) Invisibility

It's discombobulating to go from being the object of stares from others, from a sense of being highly visible to suddenly becoming invisible when seeking to place an order or receive service in a store or restaurant. Or, how's this, to be waiting in line at a counter and having someone step right in front of you and, worse, having them being served as if you were never there in line, never seen by the clerk (who'd been staring at you out of the corner of her eye the whole time). The other day I was waiting in line at the LCBO with my purchases, the woman ahead was returning booze (did you know you could do that?) and was taking a lot of time. Another till opened, the clerk there said, "I'll take the next in line. The person behind me stepped directly in front of my wheelchair and plopped their plonk down. Like I wasn't there. No I didn't do or say anything, Joe gave me and 'Please' look. So I just waited.

9) Being a Big Baby

What people say to me is bad enough, what they say to Joe is worse. Sitting in the food court at the mall here in Barrie, Joe's had the oddest conversations. Now for those who have never met Joe, he's as non-confrontational as you can get (out of the home) so he usually just smiles and extracts himself gently from the interaction. Something he wishes I would do more often. But recently here's what has been said to him. Once I shoved off to go to EB Games to check on a video game as a gift for someone. A woman, parent to a baby in a pram, said, "He's awfully well behaved isn't he?" Another time, while I was busy being invisible, a clerk said, "Is he a lot of work?" That interaction turned very nasty and it's one we don't talk about much here.

8) A Jewel in The Crown

I've always mistrusted those who use the poverty or disability of another for their own enlightenment and salvation. Like God made nations poor so that rich white kids could go and have epiphanies. Kind of like a Disneyland for the soul. Picture a teary eye-d teenager telling graphic stories of disease and destitution to parent's friends at a cocktail party. I see this sometimes when I ask someone to get something for me that's out of reach. Most people are cool with this but some leap to do it and get this beatific expression on their face as if they are calculating the cost of the jewel that God just placed in the crown that's awaiting them in heaven. Um, yeeeeuk.

7) There But ...

If I had a dime for every time I've heard someone say to someone else in reference to me, "There but for the grace of God ..." Believe it or not I feel God's grace. Apologies to the unbelievers in my readership, but I do believe - and to have it suggested that God specially granted grace to you because you walk and denied it to me because I roll is as offensive as it gets. If you listen carefully you'll hear jewels being pried out of your crown for that attitude.

6) Toucha Toucha Touch Me

Get your hands off me. Really. Stop it. Why do people feel like they can just come up to me and place their hands all over me. Well, not all over, they do have some boundaries. But get your hands off my shoulders, my arms, the back of my head ... DON'T TOUCH ME. Yesterday coming out of the cinema I was coming down a ramp, quickly, and a woman stepped right in front of me. I had to pull up quickly and almost over turned the chair. I was being invisble at the time. She suddenly saw me (because it's hard to notice a hugely obese guy plummetting down a ramp at light speed) and realized that she's almost overturned me. Her hands flew all over my back and shoulders as she apologized. I kept pulling away asking her to stop but she just kept on until HER NEED had been met.

5) Typhoid Mary

What I have isn't catching so you don't need to shrink away in horror or to pull your children to you and away from me. You know they say we only use a small portion of our brain, well that's patently obvious to me! I've had people leave stores because I came in, or flee off elevators - disability isn't catching but ignorance often is - because once one starts, others feel free to do the same. It's strange how mistaken ideas can jump from one person to another without a word being said. I think that's the nature of bigotry some how.

4) I Don't Know Jack

Yes I live in Canada but I don't know Jack. OK, Jack is in a wheelchair too ... but I don't know Jack. OK, he's my age ... but I still don't know Jack. Umm, everyone, everyone (picture me knocking at your computer screen now) WE DON'T ALL KNOW EACH OTHER. There isn't a disability yearbook with everyone's name and favourite colour or anything. We don't meet in secret every year to exchange secret handshakes ... hell some of us can't even shake hands. We don't have a secret wave we do when we see each other like VW Beetle drivers do. So, understand, I really don't know Jack.

3) Stream of Stupidity

Regular readers will know that I often rail against stupid things said to me by complete and total strangers. Recently there's been, "Is there any hope?" and "Are you allowed out?" But that's just a drop in the barrel. It's amazing how people will say mean and hurtful things in a tone of voice that they consider kindly. "It must be awful?" "I couldn't live like that?" "Wouldn't you rather be dead?" If I didn't have a thick skin before I was in the wheelchair, I certainly do now.

2) Being Prayed For

One of the most intrusive thing that happens to me is when someone comes up to me with an offer of prayer. They want to lay hands on me and pray. For my forgiveness (as if disability arises from a sinful state) and for my healing (as if I spend my day wishing and wanting to be something other than who I am). Worse is how that offer of prayer, offered in gentle loving tones turns instantly into anger when it's rejected. Really, anger. Like I didn't allow them to fulfill a need they had and they are angry at me for denying them. Like I'm some kind of prayer whore there to smile and purr and make them feel - powerful. Not me, not ever.

1) Rights Not Privileges

Why do people assume that accessibility is a gift, not a right? When a comment is made about the inaccessibility of a store, I often hear, 'The disabled don't shop here." Um, because we can't get in you dipstick. I don't like it when I get told, 'we make accomodation for those with disabilities' ... um, aren't lights accomodations for the sighted? When I go into theatres there's all these chairs provided for those who don't bring their own. All I want is a space to put mine, you don't even have to frigging BUY ANYTHING, but buying chairs for the walking is expected while providing space to the rolling is INCONVIENIENT. What is that? Accessibility isn't accomodation, it's a reasonable expectation. A human right.

Um, I have to tell you, that in writing this I had to stop several times because I got myself upset. I had to stop once or twice to laugh too ... like at the memory of the clerk with the condoms getting a horrified look on his face and quickly running my order through the till. But this was somehow, wonderful. Like I'd wanted to say it for awhile. I'm sure there are other lists out there ... if there is ... could you cue me to them. Or if you do your own list ... please leave the web address in the comment section. However, I'd like to grow this list to 50 ... so if you have something to add to the list, put it in the comment section.

Cool?

28 comments:

Lisa said...

As always Dave, succinctly put. As a parent of a child with DS, my favourite is point number 4. The others made me giggle, and also get mad too, very thought provoking :)

Aussie Leis.

Heike said...

"awefuly well behaved?" Not quite the way i think of you Dave. Thankfully not.
Love your comment about places providing chairs for those who didn't bring their own. Now that our daughter (aged 2) has had her first outings in her power chair, we have re-entered the world of stupid comments (been there for a few years with our older son). Wil surely be able to add to your list soon!

Belinda said...

An excellent list, both funny and sad, but mostly good information. It should be sent to the head offices of businesses, so that it can be used in orientation of their staff, if they really want to offer good customer service.

The main point is, the list should not get lost, but be put to good use, like being read by those who need it, not just those who identify wih it.

Susan said...

I like Belinda's comment and agree!

And to add another to your list, how about this time? Someone - a complete stranger - started a fairly innocent conversation with you? and then quickly moved to, "If you don't mind my asking, what is your diagnosis?". As if she had some divine reason to know.

That was creepy. I'm sure she thought the reason we all turned ice-cold was because you didn't respond, but in actual fact it was absolutely and without question because of her own rudeness. All you said, simply and politely, was, "I'd rather not answer that question."

I'm sure she went away thinking you were the rude one...

andrea said...

# 11) What, you were buying condoms so your bananas would have raincoats?!

# 12) My husband is hard of hearing, and once in a while he gets that LOUD and S-L-O-W thing done to him, which of course makes understanding even more difficult

Hell, I have perfect hearing and Auditory Processing Disorder, and if I ask for a clarification on part of what someone said, I get the same thing.

# 5) Once in a while I have a day where I am both stiff from arthritis and being especially ticcy and you would think that I was a cockroach suffering pesticide-induced death throes with some of the looks I have received.

Here's a new one for your list, the ever-popular item for anyone with a chronic medical disorder or neurological quirk (I'm enumerating it as "N" in case someone beats me to posting):

# N) Being told that I should try X, Y or Z medication / therapy, or even worse, C, F, or S (expletive) bunk "therapy", pseudoscience "treatment", or dangerous "cure" to get rid of whatever condition someone else thinks I have. Because you know, they are a self-described Expert on the condition from having read a single article or Web page full of misinformation and old theories about the condition, or their spouse's co-worker's brother's son has what you have and it helped him.

Gah!

andrea

qw88nb88 said...

Ooh Dave, there are a bunch of these lists in the Ouch! "Top Ten ..."
http://www.bbc.co.uk/ouch/play/topten/

FridaWrites said...

I'll add some of my own--I may start a list later.

-People always want to tell me about criminals or badly behaved people in wheelchairs (apparently some guy in a wheelchair shot someone recently?). Nevermind that we're far more likely to be victims of violence and prejudice.
-Anger. If the sidewalk or pathway is blocked, it's my fault, not the fault of other people who are standing there blocking everyone, or the person who abandoned the grocery carts so I can't get through. It's my fault. Sometimes for just sitting there doing nothing. I'm "in the way." Though really, I don't take up much room with this scooter.
-People staring, literally slack jawed and glassy eyed.
-People turning bright red and looking really embarrassed. Rarely, suppressing smirking. This one I can't figure out. Makes me wonder if there's some ridiculous commercial for my particular brand of scooter.
-Similarly to Andrea, lots of medical advice. Most of which is verboten for my conditions. Acupuncture. Yoga. Walk more (!?#!). PT (I already do that!). Counseling. Chelation for heavy metals.
-People stopping in front of me and expecting me to navigate around them. Rather than taking a tiny jog to one side themselves.

FAB said...

Dave I am devastated to learn that there is no secret handshake...I thought that was right up there with the free toaster given out to members of GLBT who convert others!

I made my own list, but it was of comebacks to people inquiring about my condition, it's at http://fab-searchformeaning.blogspot.com/2008/06/shanked.html

I had forgotten about all the experts who offer "cures" that happens all the damn time! Thanks to those of you who mentioned it!

andrea said...

Oh yeah, the secret VW wave ... they didn't tell me that when I bought my Bug! ::pout::

luvmypeanut said...

We too get the "OMG is it catching?" look, drives me insane!

I also have to add the ones who feel the need to "top" your horror story, with a horror story of someone they know (usually a friend of a friend's second cousin type thing), who is really worse off than you are (or in my case, worse off than my child is)...thus making it all about them somehow!

And for us parents of children with Down syndrome "They're soooo HAPPY all the time" WUGH!

Oh and I can't forget the ever present "Is he high functioning"

*rolling eyes*

Kei said...

Cool. #11 cracked me up, and I've heard #4 many times.

I hope writing this list was a catharsis for you.

I really would love to sit and have some tea and a nice meal with you one of these days.

As for lists, I've yet to come up with one in regards to William and Down syndrome, but between my hubby & I, we've heard:

"how badly is he affected?"
"is he high-functioning?"
"if you come to our church, we will pray for God to heal him of his 'affliction'"
"maybe he'll grow out of it"
"he can read?"

I do attribute the comments to their ignorance of the facts.

andrea said...

Witty comebacks from the BBC Ouch!
http://www.bbc.co.uk/ouch/play/topten/wittycomebacks.shtml

I really liked #2, "Do you really need that [prescription / assistive device / extra service]?"
"About as much as you need your sex organs. I can live without them, but it's much nicer this way."

Donimo said...

Great list, Dave. I hope it was cathartic writing it down. I find that it's quite possible to laugh at this kind of idiotic behaviour and the clueless things people say when one can connect with others who have had similar experiences. The Ouch lists have been written both with great outrage and also sharp wit.

Seahorse did a guest spot on my humour blog where she wrote about the ridiculous things people have said to her when she uses her scooter:

http://chronicholiday.blogspot.com/2008/06/monday-quiz-scooter-edition.html

(I'm not sure how to make links work, but you can check out her "scooter edition" post, if you like. People added interesting things in the comments section that they've heard or experienced as chair/scooter users.)

For me, the oddest and most consistent thing I get when I'm in my wheelchair and I'm faced with an inaccessible stairway or the like, and someone associated with the restaurant/bus/building looks at me and says, "Can you walk?" As it happens, I can walk, but can most people who use a wheelchair? I doubt it. And I'm not frickin' walking right now and would like to stay seated, thank you very much, so can I get into your restaurant/bus/building as I am, please?

Excellent post, I would like to see it reach those who need a good dose of enlightenment.

Tamara said...

Oh mine were already added to the comments of the other parents of kids with Down syndrome ...

"He has a mild case, though, right"

"They're so *** ... sweet, loving, stubborn, etc." He's not a PET, and he's actually pretty rotten most of the time - but in a fun way ...

"Is he mainstreamed?" What does that really mean? Do they want the regular ed versus special ed minutes in his IEP?

The other thing that drives me nuts is when I'm trying to correct him because of something he's doing that's not appropriate - as I would if he didn't have Down syndrome - and I get the "Oh, it's okay. I don't mind." Well, I do mind.

andrea said...

... because shockingly, he's a boy before he's a boy with Down syndrome!

Anonymous said...

Let's see...I've gotten the
- Oh, you're the mom??
beacause as you know people with disabilities don't have sex or produce offspring - HA!
-It's it nice they let you work? - yeh and they pay me too!
-What kind of accident were you in? - I didn't realize everyone that uses a chair was in an accident did you Dave?

gracie 1956 said...

I just hate it when people say, "she doesn't look retarded" when talking about my daughter. What the hell does that mean? Once I replied with, well you do, you poor thing!

Alia said...

Thanks for the list. I went to lunch with my teenage daughter and her friend, and as we finished up, the waitress came back and asked if I was done. I looked at my plate, and said, "Yes, I think I've eaten everything I want to." The waitress smiled, picked up my plate, and chirped "You did a good job!" Cracked the teenagers right up.

Danielle said...

"Honey, didn't you know there is a TEST for that now? They can catch it before birth and take care of it then."

The look on her face when I informed her we DID know before birth and chose NOT to kill our child.... well she told me I had ruined my other child's life and my marraige and my entire family by bringing this "burden" into the world.

That "burden" would be my "right on track" 5 year old who is "testing on age level."

People are stupid, though I have a friend who is gay...and he gets the "Hey, do you know John, he's gay too!" thing, all the time.... lol

wendy said...

OMG Dave! Faves from your list are the condom one and the "awfully well behaved". As a staff person who works with people with developmental disabilities I've seen many of these first hand. The one I hate for myself, as staff, is the "you're a saint" attitude. "I could never do what you do" one woman even added "because I have a big heart" Wow..thanks! LOL

Colleen said...

Dave I think this list is going to get very very long!
How about the doctor who after examining my daughter asked me if I took thalidimide while I was pregnant - yes folks this was a doctor in Ontario in the 1990s! Or the doctor at the teaching hospital who was looking at my daughter for a skin rash and called all the interns in and played guess the syndrome. I definitley think one of the items on the list needs to refer to medical personnel who I think should know better than this!

Veralidaine said...

The condom one made me laugh until I cried. I swear, Dave, you will be the death of me!

I can just picture you delivering that line, and the clerk's look of horror. Then I laughed even more imagining what he THOUGHT you were using them for!

"I cut them in half and stick them to the wheels-- the lubricant leaves really cool tracks wherever I go."

"I wrap them between my spokes, like baseball cards for grownups!"

"Two words: Fabulous Hats."

"I go home, stare at the box, and cry because nobody loves us cripples."

"They're for my daughter."

(Wait, no, that's not right, that still means you must have had sex to produce her...)

"They're for my FRIEND'S daughter."

(That's better, much more non-challenging! Though a little perverse)

"I put them on the handles in the back to give a slimy surprise to anyone who tries to push me."

Anonymous said...

How about the comments I often get being a very overweight woman...... " but you have such a pretty face!" Geez, how kind of you! I'm a fat ass but I have a pretty face!!!!

ckc said...

I have a son with Down syndrome, and I hear "They're such happy people!" and "God must have given him to you because you're such special people" all the time. They talk to me instead of him, and I have to refer waitresses to him every time we're at a restaurant. I've also had people come up offering to pray for him or lay hands on him. I've learned to smile and wave, but really, all this gets to be too much sometimes.

belgatherial said...

Here via bookgirlwa.

I actually watched that prayer thing happen today with complete shock and disgust, and am glad to hear that my reaction was valid. Guy just sat there and offered to pray for a disabled man, who, as far as I could tell, he'd never met. I was appalled. I was like, "How do you know he wants your prayers? And what's more, do you not realise how viciously condescending you are being?"

Shocking.

I enjoyed this. :)

Sharon said...

I love your list, and the contributions in the comments too.

I hate when someone says, 'well, it's OK for you' (raising an autistic son) 'I wouldn't be able to cope like you can.'

It's similar to the 'God doesn't give you what you can't cope with' line, which is lost on me as an unbeliever.

I also get annoyed with the questions about his 'functioning level' or being told about some story in the media about the child who took/did some ridiculous pseudo-scientific therapy and got better.

Enjoy my boy as he is please!

Glee said...

The one I hate is that people assume that we all have a "carer".

I went to a family activities day with my sister-in-law and her two kids at the Art Gallery. We all gathered around and got the lowdown about what we were going to do today and then the woman said "everyone follow me". I watched her head up the stairs and being me yelled out "and how am I to get up there?" and then again and again as they weren't listening. All of the women in charge went into a panic and were running around like old chooks with their heads cut off. They did sort it after much adamant insistence from me. First they said "oh we can find something else for you to do". That got short shrift "no I am here to take part in the activities with my nieces!!"

My Sis told me after that she heard one woman say to another while they were panicking "Where IS her Carer?!!!!

Good job I didn't hear that or I would have jobbed her.

The being jumped over in a queue is the one that really gives me the shits and I never let them do it or let the shop assistant get away with it either. grrrrrr

We must always (if we are up to it at that moment) challenge these sorts of behaviors otherwise they believe it's ok.

cheers
Glee

Beth said...

My jaw literally dropped at the "he's well-behaved" remark, and I snort-laughed at the condoms. Not the buying of them, mind. The response.

Tamara, I don't know if this helps or if you have any other children, but it happens to parents with non-challenged children, too. "Oh, no, it's okay!" No, it isn't. I'm his mother, and I've decided that his behavior is inappropriate with regards to the standards we hold to in our home. So how about you just shut up and let me parent my child, eh? Makes me want to scream. Of course, if I hadn't tried to address the behavior, then I'd be condemned as a poor parent and my child a monster (he's three...I'm the only one who gets to call him a monster! :) It's always something. There are a great many idiots in the world. At least we get to practice our good manners, right?