Thursday, September 30, 2010

A New Language

I think I speak, 'disabled'.


Cause what comes out of my mouth is clear - to me, seems able to convey meaning - to me, seems plain and simple without much complexity - to me. But without question I'm speaking a completely different language.

Like the other day:

Since becoming a wheelchair user, I've been trying to increase my mobility and ability to deal with everyday obstacles. I've conquered both sets of doors going out in both my power and manual wheelchairs. I'm OK with coming in in my manual chair, this is a recent set of accomplishments.

Now I'm really trying to figure how to get in the front double doors in my power chair, on my own. As Joe and I are on our way home from any particular outing, I scoot ahead and try to negotiate the door. I get in maybe 40 percent of the time. It's not too frustrating because I know that Joe will be along in a few minutes if I get stuck. I pulled up to the door and began to manoeuvre the chair such that I can get through the door. A fellow standing several feet away came running towards me to help me, I called out - obviously in disability speak - 'No, its OK, I'm practicing getting in on my own.' He kept coming. I called again, 'Really, this is just practice for me, I don't need help.' He kept coming. When he got to the door he grabbed it and opened the one side I was struggling with. I said, 'Really, I'm simply trying to learn to get in on my own.' He said, and I'm quoting here, 'No problem, glad to help.'

Like the other day:

I'm pushing my way over to the car in the outside parking lot. I've been pumping iron (really) to increase my ability to push further and further without help. A woman saw me pushing and dashed over to the side near the building and stopped dead, waiting for me to pass. The sidewalk is very, very wide. I said, again in that odd language called 'disabled' ... 'It's OK there's lots of room.' She smiled and moved closer to the wall. I said, 'Really, there's lots of room.' She said, and I'm quoting here, 'That's alright, I'll give you all the room you need.'

Like the other day:

I got off the elevator rushing to get through the doors and down the driveway. I'm pushing myself quickly because I'm trying to get to the top of the underground parking lot driveway before Joe gets there with the car. I've never made it. This time I tired out just around the corner of the block. It's a hard push because the sidewalk slopes a lot so I have to push primarily with my left arm. But I try as hard as I can. I had made it past the tree ... a new record for me and I stopped to wait for Joe. A passerby on the other side of the street called to me, 'Are you alright?' I called back, 'I'm fine, I'm just waiting for my friend.' She called, 'I'll come wait with you.' I called, 'No, I'm fine, he'll be here in a minute.' She said, and I'm quoting here, 'Don't worry, I've got lots of time.'

I know I'm being churlish here, all these people are being 'nice' and I should be pleased that they aren't being 'nasty' ... but, and it's a big BUT, could you just listen to a moment to what I'm saying. Stop listening to what the stereotype cripple is saying loudly in your head and listen to what the real cripple is saying out loud in the real world. Is it so much to ask?


I wrote the above several hours ago, I was sitting on the couch watching an episode of Johnathon Creek when I started thinking about my life as a service provider. Like when I first started ...

a boy with Down Syndrome struggling to tie his shoe, I said, 'I'll help,' he said, 'I can do it myself,' I said, and I'm quoting here, 'that's OK, I'm here to help.'

a man with a disability on an 'outing' with me to MacDonald's said that he wanted to go buy his food by himself, I said, and I'm quoting here, 'I don't mind going up with you.'

a woman with a disability in a group home said, 'I'm not tired,' I said, and I'm quoting here, 'yes you are, it's your bedtime.'

So, maybe I can remember these now because I now speak 'disability' ... I hereby apologize to all those I didn't listen to in the real world, to those whose words I replaced with my own, to those whose meaning was clear but my comprehension hampered by my stereotypes, my role and primarily my power.


It pisses me off.

It must have pissed you off too.


Kristine said...

My favorite (sincerely, not sarcastically!) are the conversations that go like this...

"I can help you!"

"No, thanks, I'm fine."

"Are you sure? Because I really don't mind."

The question shows that they heard what I said, and respect my right to be independent if I choose. And the extra offer shows that they're sincere in their willingness to help, so it's safe for me to accept the help if I choose. At this point, whichever answer I end up giving, that answer should be final, no need to prolong the matter. I really appreciate people who manage to be both respectful and helpful!

Carleigh said...

It has been my observation that people tend to lose any and all semblance of sidewalk etiquette around my partner, who is totally blind. He uses a cane, swings it in a confident and perfect arch in front of him, and generally stays on the right side (this is in the U.S.). Too often, people clamp up, go completely silent and try to squish against the wall, even if it is on their left. They do everything to avoid his cane, him, and it ends with everyone hurt, upset, or tripping over themselves. It's really horrible, and I imagine embarrassing for my partner.

Here's a tip when sharing the sidewalk with ANYONE: just say hi.

Tamara said...

Okay - I always wonder about this. I mean I do know better than to help someone who doesn't want my help. But, it's okay to offer help? Sometimes I'm just not sure.

Spinningfishwife said...

That sort of thing is not just confined to intereactions with disabled people though, is it? it happens to the elderly, to children, to women, and always from the person who perceives themselves as more fit to do the task and isn't taking no for an answer. It happens a LOT to kids in my experience which is not a good thing because then, how are they going to learn?

But also, perhaps it's a cultural thing. Here (Scotland) if a stranger offers to help with whatever it's normal to decine, they offer again, you decine, they offer again, you accept with bashful thanks. It's a sort of dance and you go through the steps. I always say "Can I help you with that?" to whoever but we still have to go through the dance and I know that it's unusual to get a NO on the third repeat, and also it's regarded as somewhat rude here have to say. This is different from just barging in and taking over the situation of course, we're still on the verbal dance.

So maybe there's a cultural element? But I don't think anyone should be criticised for offering to help tbh. It would be worse if they didn't, surely? But bulldozing in yes, that's annoying and disrespectful of folk.

AkMom said...

I echo Tamara. Is it OK to ask? I met up with a woman in a wheelchair in the ladies room the other day. She had just come out of the stall, we said hello. And then I asked if she would be needing help with the exit door. She said no, I left.
Was it OK to ask?
Or should I have assumed that since she was in there on her own, she was just fine, thanks.

Rachael said...

And I often wonder, is it a hearing impairment, an audio processing impairment, or sheer idiocy?

The Untoward Lady said...

I understand you loud and clear, Dave!

I have a neurological movement disorder and people tend to not offer or force help on me at all. The thing they do, though, is they ask me if I'm okay and then when I tell them that I am they interpret my "I don't need help" for "I could stop if I really wanted to" and then become incensed because my disability somehow annoys or inconveniences them.

Sorry for, you know, existing.

But I think the hardest and saddest parts of the whole disablese debacle for me is when it comes to my autism and mental health issues. Constantly, when I tell people what is going on in my head they just don't listen at ALL! And that sucks because it almost invariably means that they either think I'm "not that sick" or that I'm lazy or some such.

Oh... I almost forgot. There was this one funny time that someone just wouldn't stop trying to "help" me. It was on the bus and she thought I was having a seizure. The joke is that it took her about five minutes of which time I was having very severe convulsions and vocalizations for her to do ANYTHING and then she became overconcerned.

Dave Hingsburger said...

Tamara, AkMom, I think it's great to ask ... it's the listening to the answer part that matters. I've asked other wheelchair users if they've needed help with things, I'm quite tall and can reach tall, so I've asked. But then 'yes' means 'yes' and 'no' means 'no' ... end of story. Or at least it is for me ...

jwg said...

It's a little thing, but if I need to get by someone when I am on my scooter and say "excuse me" why do 99% apologize? They didn't do anything wrong.

Anonymous said...

I agree! And the addition at the bottom is very true!

WeeJenny said...

Something my Mum said to me as a small child is "Shut your mouth and open your ears." I find this useful when I'm out and about.

There have been times that I have phrased it exactly as my Mum did to me, when I'm tired, in pain or just not being listened to. I do try to phrase it in a more polite and less condescending manner, however it doesn't always get through!

It's my body that's broken, not my mind! :)

Faery said...

I work for a charity that runs Disability Awareness courses. One of the stories that is part of the course is a real-life story about one of my colleagues who is a wheelchair user. She had come to a stop near a ramp up to a building in order to rearrange her bags before entering when a kind passer-by came up and asked if she needed any help getting up the ramp. She refused and explained that she was just resting. The gentleman seemed to ignore this and continued to 'help' push her up the ramp. When she got to the top she politely thanked him and let him go on his way...unfortunately she then had to ring her husband to take her to the hospital and the gentleman had taken her by surprise and caught her finger in the wheel!

We're trained to always ask if someone needs help, and then if they accept the help to ask that the person is ready before attempting to move them, or open doors etc.

JWG - I don't know where you're based but its perfectly common for people to apologise for all sorts of things in the UK. I find myself apologising to people who have bumped into me in the street, opened doors into me and, most bizarrely, opened the door to the toilet I'm using. It's just one of those funny English quirks I think!

Nathan Dawthorne said...

Wow. Life is full of paradoxes. Those who are assholes and make your disability out to be an inconvience for them and those who see disability as a wall for them to do there good deed but end up being condescending in the process!

Rarely is there the middle ground!

Andrea S. said...

To Tamara and others who asked: I share Dave's opinion that it is always fine to ASK. I don't think most people with disabilities get annoyed at just being asked. When it does become annoying is when we have to say, "Thanks, offer appreciated, but no thanks" more and more insistently multiple times only to find that people still force the assistance on us anyway when it not only isn't wanted but might even be dangerous or harmful (like the woman who had her finger injured ... and I have heard of worse situations with either more serious bodily injury or a broken wheelchair because the "assistance" was done wrong or wasn't the right kind of assistance).

If you offer and they say "yes"(and sometimes they will) ... then go on and help. Just double check that your idea of "assistance" and their idea of "assistance" match up--don't push a person to the right if maybe they actually needed to go to the left or whatever. Sometimes the kind of help people with disabilities may need may seem "counter intuitive" or strange to people who don't share those disabilities and don't really understand how our bodies actually work in real life (as opposed to the theoretical model in the heads of non-disabled people). So this is why LISTENING matters so much.

If you offer and they say "no" then leave it there. Or if you want to be really clear that your offer is sincere then the approach Kristine describes is probably fine in most cases ("Are you sure? Because I really don't mind.") i.e. making it clear you're genuinely prepared to assist but also making it clear that you're okay if the answer is still "no" the second time.

Shantimama said...

The most helpful phrase I ever learned at a training that I find applies to just about all aspects of my life is, "Whose need is being met by my doing or saying this?" Maybe if more people asked themselves that question on a regular basis life would be a whole lot easier.

Liz said...
This comment has been removed by the author.
DaveD said...

I'm guilty of this one on more than one occasion. I really didn't appreciate what I was doing until a young man with motor control problems in an electric chair woke me up.

The young man was obviously trying to hit the button to open the doors and was having a hard time of it. Me, being helpful I thought, ran up saying "Let me get the for you". I ignored his hand waving (he couldn't speak which I didn't realize until I saw the language board on his chair) or it just didn't register and I hit the button.

His mother ran up to me (I didn't see her well off to the side) and told him to just wait for the door to close. She then turned to me saying that he was trying to do it for himself and would I mind just letting him be.

Boy I felt stupid. I blushed profusely and apologized to the young man saying that my intentions were good but obviously out of place here.

What got me is that his mother thanked me for saying that to him, not her. She said, "You'd be surprised how few people address him directly."

Well, lesson learned.

Betty said...

Dave, it’s called not listening. It happens to people who aren’t disabled too, perhaps not as often, but it happens.

It seems more and more people listen to a dialog in their heads instead to others. They see what they think a thing should look like, not what it looks like.

“May I pet your dog?”, “ No, he is scared of people/I’m training/he bites/….” Always comes across as “Sure you can”. Not quite the same, but this is the one I run into most often.

People think that because you are doing something of interest to them or simply seem different somehow, it gives them the right to intrude.

It is horribly frustrating for everyone.

Jennifer said...

I have the same question as someone else asked, "but is it ok to ask?" I want to be a compassionate human being to all. I want to help someone who needs help. So is it ok to ask? But if I ask, I must promise to truly listen to the answer and not push.

Anonymous said...

Us TABs are brainwashed into not hearing "I can do it" or variations thereof. It's one of the major disadvantages of TAB-iness.

Case in point, I show know better, but don't act better. The other day, a mate of mine was carrying a bench (she has back troubles) she said that her back was hurting. I made the decision that she needed me to take over, for her. Foolish me, she knows her body than I ever will.

Elaine Bradley said...

Don't stop blogging, you are good value. You make me think. I have a son with Down Syndrome and it is very hard to let go enough to let him grow. He gladden's my heart when I hear him say "I'll do it myself".

Kristin said...

It's not just with disabled people. When people go into a conversation with preconceived notions, they don't tend to hear what is really said. For example, when people say "Hi, how are you?", they expect to hear something along the lines of "I'm good. How are you?" Next time someone says "How are you?", try responding "I'm feeling", just "I'm feeling." Most of the time, people will respond as if you've said "I'm good. How are you?"

Pink Doberman said...

Having been in the "helper position" in my previous life.. I had the same experience that Dave had wanting to help everyone. I learned to listen from a friend who was in a chair. Sometimes help is needed and may be asked for or accepted if offered and other times no help is needed someone prefers to do things on their own.

Now being in different shoes, I totally understand peoples willingness and desire to offer and to give assistance. I only have limited energy, if someone offers, MANY times I will accept their help! It means I can do more. Other times I may not "need" their help, but I do accept it with a joyful heart, because I know where it is coming from.

My husband has always opened doors for me even before my current situation. Others would open doors for me to. Did I NEED them to open doors for me. NO, they were being polite. I accepted gratefully in the manner these things were offered. Chairs were offered to me before or getting me a glass of water was offered to me before, I learned to accept these things as gifts.

Now I am still offered these same things. Perhaps a little more and by both genders now. I still accept. Does this make me less of a capable person? I don't think so. There are times that no one is around to do things for me. I then will "practice" or do things for myself as I have learned.

I understand that everyone is different! Thank goodness for that. I am more able than others and I may still offer someone else some help too. It feels good to offer and be of help to someone else. That may be the only highlight in someones day.

LISTENING for sure is the key!

I also have a service dog and completely understand as well about people not listening when you tell them he is working and they can't pet him. It's like I stole their cookie! What they don't realize is that, He's my cookie and I need him, keep your hands off my cookie! =D

My two cents. Thanks Dave for your great stories and lessons! They brighten my day!

Anonymous said...

Dave - A great post today, and the commenters are terrific! Enlightening to hear their perspective from both sides (?) of the issue. As an able-bodied female, years ago I had to learn that here in the southern regions of the US, it would be rude of me NOT to allow a gentleman to hold a door for me, even if the man was elderly and seemed frail. The trick was quickly guessing who was "old-fashioned", and always replying "thank you sir."

Stephanie said...

what a great post. And something to think about. I have a daughter with Ds and I want her to be as independent as possible. I can totally see myself acting like this to her. And literally holding her back.

BTW, nice amount of comments...

Colleen said...

Dear Dave:

Shantimama, I agree. It is a matter of whose need is being met here. It is also a matter of power. The guy who doesn't take no for an answer knows that he can meet his need to help and the person with a disability is unlikely to be able to stop him. His need to help out trumps Dave's desire to practice and he can overpower Dave in the sense that once the door is open what can Dave do without seeming like an ungrateful wretch - Dave is polite - Mr. door opener is determined to do good whether Dave likes it or not - power. For me anyway that would be the hardest part - having someone misuse their power like that to me.

Thanks again Dave - great food for thought!

Lene Andersen said...

I laughed and laughed and then... then the post became very powerful. It shows the transition between the two states and how mindless we are - in any situation, I could imagine, but probably mostly with kids and people with disabilities. Somehow, we/they aren't allowed our own opinion.

"yes, you are. It's your bedtime" was my favourite, along with the door guy. ;)

Dave Hingsburger said...

Wow, did I have fun reading through the comments ... it shows the commonality of the experience and it was good to broaden my understanding of this outside the world of disability. I'd been away from the computer all day and it was great to have so much wonderful reading when I got home. Made my day, thanks.

Kasie said...

I too have noticed that people say they are sorry a lot, in passing. I believe it is better to say "excuse me" when passing someone. I'm sorry loses its meaning when used so habitually.

Loved the post, Dave. Thanks for the reminder. We could all afford to listen more (two ears) and talk less (one mouth)!

Anonymous said...

I never mind people asking, but so many people don't ask.

I can and do open doors just fine, but every day someone has to run up and stand in the way, instead of letting me do it myself. I know they mean well, but they NEVER ask. And won't take "No thank you, it's easier if you let me do it myself" as an answer.

Someone almost broke my hand pulling on a door I'd already opened. Some people will get furious that you won't let them help. I almost lost a job when someone reported *me* after after being down right rude in refusing to take "No thank you" about a opening a door.

I have profound cigarette allergies, and really hate having anyone I don't know get close. Or if someone blocks me from being able to leave. I've had too many wannabe Samaritans make me sick from smoke on their clothes.

And as much as lit looks like they want to help, what they are really doing is saying "You are different".


Kat said...

I rarely find that the things I read on your blog come to such immediate relevance to my life, but something happened at lunch that made me think of you and want to thank you for writing out this post.

I was at the coffee shop, hanging out at a table, reading my book, when a woman in a wheelchair pulled up to the table next to mine. She placed her goods on the table, and started pulling out the chair to move it out of her way so she could enjoy her coffee and snack. I looked up, and offered her a hand. And when she gracefully told me that she didn't need any help, I didn't. I went back to my book.

I felt a little rude at first, but your post started swimming in my head. I realized that by treating her just like any other person moving chairs to accomodate their party's needs, that perhaps I'd given her all the help she needed.

Thanks for giving me the help that I needed to be as graceful as she was.

Dave Hingsburger said...

Kat, your comment really pleased me, as have all the others. But I liked the fact that you offered help and simply listened to the response. I'll bet that woman went home thinking 'finally someone gets it' ... you made her day and mine!

Anna said...

Dave, this is the first time Ive read your blog. Being new to all of this, your voice speaks loud and clear. I WILL do better at planning ahead so my daughter can take all the time she needs to dress herself. Im teaching her sign language to give her a voice. Now I need to listen...... thank you.