"You aren't getting toast, you always order toast and you never eat it."
Tap.
"I said, 'No' forget the toast."
Tap. Tap.
"Drop it, no toast."
TAP TAP
I had to look. They were at the next table. A woman of about 20 with a much older man of about my age. He sat in a chair that looked like it was designed by NASA. A big blue seat that cradled his body. He sat upright glaring at the young woman. Beside him on a board underneath clear plastic was a communication board. He was tapping something on the board. That something, I'd guess from the conversation was, "Toast."
She was having none of it. she gave him a lecture about waste and about how he shouldn't order things that he doesn't eat. Forgive me for poking fun at a fellow porker but it looked like she should maybe pick up that habit a bit. When she finished her little speach, he simply lifted his finger in a mammoth act of will and of defiance.
TAP
I looked over at Joe who looked back at me and said, "Don't."
I didn't.
At first.
She was so angered at his defiance, she went after him with a laundry list of complaints about his behaviour and his attitude and his very being. Finally she said, "If you keep this up, there will be no television for you tonight."
He was in his 50's.
She was a kid.
Joe said, "Go."
"Excuse me, ma'am," I said, I've always loved calling the young 'ma'am' or 'sir'. She glanced up at me surprised at the intrustion. He looked over and saw that I was also in a wheelchair and smiled greeting. "If he wants fucking toast, he should be able to have toast." Forgive the foul language but I had just gotten off an airplane after a 5 hour flight, there was a 3 hour time change, and this deal about the toast symbolized everything I hate about the helper / helpee relationship.
"How dare you speak to me that way!"
"Well the whole restaurant has heard how you speak to him. Good heavens, you are arguing about toast. Toast. do you realize how ridiculous that is. Why are you making an issue about toast? Why do you even care about toast? And further, I wouldn't have said anything but the 'You won't be able to watch television' thing ... he's not a 4 year old, you're not his mother. If I get this right, and I'm guessing, you work for him. Get that YOU work for HIM."
At that there was a loud Whoop! from the guy in the chair. Everyone in the restaurant turned and smiled. They had no idea of the subject of our conversation but they saw a happy guy, a triumphant guy, in a wheelchair. She must have felt surrounded.
"Fine, if he want's toast he can have his damned toast."
"Thankyou, when you wake up in the middle of the night, you'll feel better about yourself."
He, waved me over. Carefully, he flipped the page of his communication board over to the side that simply had an alphabet.
Carefully, he tapped out, "My name is Charlie."
"My name is Dave."
He gave me a thumbs up.
I went back to my breakfast.
I heard them order him toast.
It's "One Flew Over the Cuckoo's Nest" all over again, and if Charlie had thrown his communication devise at his staff, he would have likely been punished with no T.V. for a week.
ReplyDeleteYEAH DAVE! If everyone spoke up when they saw injustice or abuse, the world would be a better place. I have spoken up for kids getting punished and humiliated in public. The look on their faces---equal parts fear and unbelief that someone actual stood up for them---makes it all worth it. Someone cares. That's all you need to get across.
ReplyDeleteYou are amazing. That's all.
ReplyDeleteBless you, Dave. This brought tears to my eyes. That was downright abusive.
ReplyDeleteLike Joe, my husband always throws out the "don't say anything!" too. Often I don't, but sometimes, it's really called for. You also demonstrated to everyone else in the restaurant that it was okay and right to speak up.
Yea, well my daughter (age 13, has Down S)in the morning ALWAYS wants me to pack for her milk--- which will spoil by 1:00 (when she returns from school). And, she asks this when she is hungery, but then her breakfast hits her stomach, her conterta (with side effect of lowered appitite ) kicks in, and it ALWAYS comes back untoached. I still give it to her sometimes, sometimes I plea bargin for water. She usually will hear that she doesn't drink it.
ReplyDeleteAnd sometimes I refuse. But not often. (And I am not working for her.) But once she insisted, so I gave her. And for once, she DID drink it. Showing me that things are not set in stone
Yay for toast - and for you reminding us again what it's all about!
ReplyDeleteMan, some of the stuff you see and hear, I can't freaking believe.
ReplyDeleteHurray for Dave and Charlie!
ReplyDelete"Don't say anything," is almost like being an accessory to a crime, IMO. I always say something. It's when people say nothing that babies get left in cars to suffocate, that people get abused in institutions, and hate crimes are committed.
Oh wow. That's awesome. I've ALWAYS wanted to do something like that, but at times when i've witnessed similar things i've always been too scared to - scared that the "carer" would respond violently, would punish the disabled person more because I tried to undermine her power, would call the police, etc, and also that everyone else in the area would be on the carer's side... challenging patently unjust authority is one thing, but challenging authority which hides behind the facade of "care" is quite another, since most people are seemingly totally fooled by giving a "caring" name to oppression...
ReplyDeleteI think that it might actually be easier to challenge something like that if you have a visible disability yourself - as someone who looks superficially "normal", i think if i said what you said it would have been a lot easier to use the "you don't know what you're talking about, and if you say you do you're lying" defence, plus the sympathies of bystanders would be with the "innocent", "caring" woman being intimidated by the big angry nasty man - whereas, with someone visibly disabled, i strongly suspect that would be very different...
(It might well be that the only reason he orders toast and doesn't eat it is because annoying the staff by doing so is one of the only ways of exerting a little bit of control over his life that he has...)
Love it, love it, love it, (chortle, giggle).
ReplyDeleteLisa
Okay, Poco Hor is my all-time, number one favourite post, and I've never been able to figure out what #2 is. Until today. I LOVE this post Dave... I love it, love it, love it.
ReplyDeleteAnd you know, I don't particularly like the "F" word, but sometimes it's just EXACTLY the right thing - the only thing - to say.
Way to go, Dave. Roll on!
My mentally challenged daughter told a woman who was verbally abusing an elderly man (maybe her client, maybe her relative) "you should be ashamed of yourself for saying that to him." Needless to say I was very proud of her and a little ashamed that I had not spoken up first. The elderly man touched my daughters face with such gentleness and told her that she was an angel. She said, "I know, my Mom told me that!" Let's all keep speaking up and quit letting unacceptable behavior just pass by without being challenged. Maybe someday it will be unthinkable to abuse the handicapped. Hey,I can dream can't I?
ReplyDeleteWoo hoo! Power in collective action. I hope that woman now thinks VERY carefully about the way she treats her employer and the fact that he is an adult. I have a feeling that she will.
ReplyDeleteBravo!! Bravo!! Bravo!!
ReplyDelete(Take a bow!)
I had a similar experience on Sunday http://wheelchairprincess.com/blog/2008/02/04/save-yo-drama-for-yo-mama/
ReplyDeleteI'm glad I'm not the only one standing up for others but I really wish we didn't need too! I'm now trying to come up with ways to actively try to prevent the situation I was in from happening again - any suggestions would be welcome. By the way, I sent you an e-mail about doing a website for Brent Martin, I don't know if you got it or not. but my e-mail is emma@wheelchairprincess.com or emmacrees@hotmail.com This sort of thing may be another idea for a website.
Thanks for standing up for him ... Amazing how mean someone can be when they get "power".
ReplyDeleteAnd let me add that, as someone else posted, I find it amazing that you have so many of these experiences. It's like Jessica Fletcher always being around when someone gets murdered. Amazing that it happens in real life.
Nice job, as usual.
Dear Charlie,
ReplyDeleteI think I love you. I just read your post, and I just want to say good for you! My father was born with a disability, and never seemed disabled to me because he did everything. Everywhere he went he made sure that others thought before they spoke. People can be downright rude, and have asked the most shocking personal questions. Questions that they would never ask a "normal" person. But my dad was unafraid to put them in their place. He was smart, hard working, genuine and true. I lost him nearly two years ago and I miss him everyday.
Cynthia
Believe it or not, I was Stumbling and it led me to this post...it's terrific! I will definitely be back to read more. And I'm glad you got him his toast. Well done.
ReplyDeleteGrowing up in a household with special needs children, I have learned that the most important part of the life of a person with special needs is caregiver consistency.
ReplyDeleteThere is nothing more frustrating than a well-meaning but knowledgeable person interfering with the care of a person with special needs. Certainly, you meant well and wanted to help Charlie. But by overriding his caregiver's decision not to allow him to have toast and essentially forcing her to allow him to have it, you have reversed months or even years of hard work and relationship building between caregiver and patient.
The general public means well when they criticize the actions of the caregivers of people with special needs. Certainly, abuse should not be tolerated. But this was not abuse. You said so yourself - it was just toast. She was not starving Charlie. Because of your actions, Charlie lost a chance to learn an important lesson about personal responsibility.
If you are not a trained caregiver comfortable with the person, please respect the caregiver's decisions. They are almost always in the best interest of the person in question.
I'm torn. Growing up with an autistic brother, I have to agree a little bit with Jenna about the toast issue.
ReplyDeleteBut the 'no television' thing was DEFINITELY over the line. It was totally unfair.
I guess there's part of me that wants to agree that caregivers know what they're doing... but the justice here was just too great for me to criticize.
I doubt he wouldve died without his toast. I mean come on. Its toast.
ReplyDelete@Jenna - I am a licensed registered nurse and have a sibling that has a disability. I can say with full confidence that just because someone is providing care doesn't mean they are qualified or competent to act as a caregiver. You said: "you have reversed months or even years of hard work and relationship building between caregiver and patient". The observed interactions, as documented in this blog, show this to be a classic case of abuse; Charlie was being denied basic human rights. Just because "She was not starving Charlie" does not mean that she was not abusing him. This poor man was not being allowed to make a simple choice to eat toast. Not only that, but he was being threatened with punishment which consisted of denying him the personal freedom of watching TV. As a healthcare professional, my first thought is "what other basic rights are being denied"? You also said: “Because of your actions, Charlie lost a chance to learn an important lesson about personal responsibility”. I am appalled and completely revolted by this statement! Are you implying that Charlie needed to “learn a lesson”? That is egregiously deplorable! This gentleman is not a child and should not be treated as one. The concept of human dignity is the pillar upon which all social justice efforts are based. The human person has inherent rights and responsibilities, which demand recognition – especially by “caregivers”. Respect for all human life, the ability to make free decisions and quality of life, are important elements of human dignity. To violate a person’s right to dignity is clearly unethical and should never be tolerated in our society.
ReplyDeleteIn closing, I would like to thank you, Dave, for being a voice for someone who desperately needed to be heard!
absolutely brilliant! I've worked in supported living for years and I'm sick and tired of carers expecting their service users to be saints. We all make mistakes and act in ways that aren't optimal and that's how we learn and grow, it's necessary. early in my career, I scolded a woman old enough to be my grandmother and got slapped in the face like I deserved. good for you!
ReplyDeleteimageofalifetime ftw!
ReplyDeleteYou are my hero. Thank you, for defending someone so defenseless. Let us all take notice of this and be as proactive as you are.
ReplyDeletesincerly
someone who works with these special people :)
Silence is the voice of consent.
ReplyDeleteyou know, i work for an organisation that looks after people with Cerebral Palsy. Plenty of our live in adult clients use communication devices. Plenty of them look after themselves and plenty of their parents still control their lives even though they're 20, 30 40 even 50 years old, because they've never been able to speak for themselves. I'm sick of the world thinking that because you can't talk in english, you can't make your own decisions.
ReplyDeleteThanks for a touching and interesting story. Its unfortunate that elderly and severely handicapped are viewed as children, rather than adults with something that prevents them from being as quick or to the point as the rest of us. I wish more people was like you :)
ReplyDeletedear dave:
ReplyDeleteyou rock. i see this kind of thing daily, being a nurse. doesn't go over very well when i tell the family/care takers to chill the fuck out and let the poor person LIVE. sometimes, as with charlie, it just needs to be done. keep it up because if people like us don't do it, then who will?
I know you don't know but I still wonder: it seems likely to me that she is not paid directly by him at all, that probably her check comes from a third party, best guesses being either insurance or the government.
ReplyDeleteMan I just saw Rachel's comment. Man I admire the hell out of people sometimes.
"Speach" is spelled s-p-e-e-c-h, retard.
ReplyDeleteJenna please get over yourself.
ReplyDeleteSomeone receiving care is not a PROJECT. There are no processes, no deadlines, no goals, no progress, none of the things you desperate little nothings need to make yourself feel worthy of another breath.
I'm sorry to tell you and your type this but that uncomfortable feeling you have to accomplish something when it has nothing to do with anything but you and your "specimen", that unpleasantness is self-inflicted. Don't whine about the scars you give yourself. Grow the f*** up.
I am a care worker, and I would just like to say, "THANK YOU." Never in my wildest dreams would I ever dare to speak to any of my clients the way that woman was speaking to Charlie. Thank you for speaking up. There are so many incompetent people out there, who pass themselves off as "care aides," but act like baby-sitters, or parents. Thank you for pointing this out to her, and keep on speaking up!
ReplyDeleteI am so inexplicably moved by the fact that you said something. And what you said was actually, even with saying "fucking toast", extremely poetic... to me anyway. Injustice affects the disabled or older all over the world. I like to think that it's always been that way. And I want to thank you for fighting it like I do. Words have so much power and you made that man's day. Good on you.
ReplyDeleteSome people are allergic to wheat and yeast and for some this allergy causes a lot of pain and discomfort. She may have had a good reason to deny him some "fucking toast". However, that being said, she sounds like she misunderstood the behaviour management portion of her training.
ReplyDelete@Image of a lifetime - well said.
ReplyDelete@ Jenna - dignity and respect are important @ any age, and any ability. Any caregiver who cannot provide care while maintaining these things is no caregiver at all.
Dave - stumbled this, and hope I'd have done the same thing. cheers.
This is dumb. She shouldn't have let him order that toast and this Dave fellow shouldn't have gotten involved at all. If he doesn't eat it, why should you waste it, and why should she waste her money. If anything, she was being the sensible and socially conscious one in this situation, and Dave was being a complete asshole. She was hired for this job, so she should have to deal with it.
ReplyDelete@Anonymous: jeez, there's one in every fucking crowd. I hope you never become disabled and get treated like you have no brains or will of your own. It's called human dignity, fer chrissake, and it needs to be respected.
ReplyDeleteI quit reading on your first mispelled word. You are not a writer if you can't fucking spell.
ReplyDeleteI've had great success with parents who strike their children in public by simply looking at them and saying, "Hit him again, lady! He's still breathing!"
ReplyDelete