A TED talk I watched today (Here's the link) really got me thinking about the boxes we put ourselves and others in and how we label those boxes.
We label things out of necessity, otherwise everything we owned would be put into a giant junk drawer/closet/garage, never to be found again. So, labels serve a purpose...for things.
Labels are good for people if, and only if, the person you are labeling identifies with the label and you may use it only if they feel positively about it. For example, you could label me fat, but unless you want to make me cry, please don't. Label me funny and you will be right...and if I cry it will be because I am a total sap, not because you've hurt my feelings.
Positivity in labeling is VERY tricky in the world of disabilities. That is a post (or seven) for another day. All I will say here is PLEASE follow the lead of the individuals with disabilities and their advocates; always. Words matter.
I found it interesting when Ash spoke about how angry it made her to be asked whether she was a boy or a girl. I wondered why she chose to dress in a way that made it ambiguous if it was such an issue. I mean why? If you want people to know you are a woman you should have long hair and wear pink and not camouflage, right?
I'm kidding, ...sort of. The problem, of course, is the boxes that we put people into. The ??? box does not work for us. We need to name it. We need to know. Does a gay man go in the pink box or the blue box? What about a woman? What if she is straight but HATES the color pink? What if she had cancer and her hair has not grown back? What if she is happily married, but HATES long, sweaty hair? What if she is a lesbian but (horrors!) looks straight? What if they are trans-gendered?!?!? Boom. Heads explode.
And to answer my own question about how Ash dressed: Maybe she was comfortable that way. Maybe she wanted a fight (I can relate to that). Or maybe, it was a little of both. Or, maybe she just didn't feel that she had to put herself in the "girl" box. She is a girl/woman, she is gay, she dresses in jeans and button downs and her hair is short. Geez, that's a long label. It doesn't fit and that bothers us. In turn, it bothers(ed) Ash (she seems cool with it now) that it bothers others.
This is getting to be like a movie that involves time travel. I'm going to leave the "chicken or the egg" conundrum for another day as well.
This talk also made me pause and think about how my occasionally (okay, often) militant approach to issues might have backfired. It is something I have been thinking about; trying to figure out a way to get my REALLY IMPORTANT POINT across without resorting to shouting, or my absolute favorite: sarcasm.
It's really, really hard.
I don't think I realized I was doing it, or rather, realized how it sounded until I encountered some other shouty people with whom I mostly agreed. The substance of what they were saying had merit, but the delivery system was flawed, to say the least.
NOONELISTENSWHENYOUSHOUTATTHEM!!!
Wait, what? No one listens when you shout at them.
They might hear you for a few seconds before it becomes BLARRRGH! and they tune you out; maybe forever.
So, you need to pick your battles, your forum and recognize that you are not the only one fighting.
Lastly, this talk got me thinking about my own labels. It's funny, because when I think of labels for myself, none really come up, other than ME. Finally, I am me, after years of trying to figure myself out.
I have short hair, which I love. I am a mom. I am a terrible dresser. I have blue eyes that I think are nice. I am married to the best guy I have ever known. I identify as being straight, but I love K.D. Lang and think Salma Hayek is hot. What does that mean? I means I have ears and eyes; not much more.
It's not that I don't think labels can be useful. They can. They can help navigate grocery aisles, or libraries, or help you find a file. I'm just not so sure how great they are when used to identify an actual, living breathing human and not some caricature. Labels don't tell the whole story, just a little, tiny piece of it and only the piece that your mind can perceive. No matter how many labels you put on me, you'll never never know ME, unless you put them away.
Tuesday, November 26, 2013
Thursday, November 21, 2013
Escape
In March 2004, I found a flier at my gym advertising marathon training. Somewhere in the back of my mind, I had written "run a marathon" on my sub-conscious "before I die" list.
I think it was there because it seemed really, really hard; almost impossible. If I can do THAT, I reasoned, I could do just about anything. It wasn't that I had never run before; I had. When I was seventeen and going through my first, painful breakup, I ran as means to deal with my feelings. I ran a lot. I ran in the dark and came home so exhausted that my brain didn't have room for making me feel terrible. I slept, ran, went to school...repeat, for months. I lost about twenty pounds that I really didn't need to lose at the time. Lots of running and eating one meal a day will do that to you.
That spring, I came out of my funk, wiser, more driven and with a hard body to boot. How I envy that girl. 17 years later, plus three kids, running was not quite as easy as it had been in those days. My youngest was not quite four and my oldest was seven and a half. I was coming out of the constantly-sleep-deprived phase of parenting and smack in the middle of school-homework-IEP hell. I was starting to feel like maybe I needed to get a job; but really, I wanted to get a life beyond being "Mommy".
My husband, who has always been my loudest cheerleader, read the flier I brought home and said "do it!". No whining about giving up the next six months of Saturday mornings to take care of the kids while I ran (like I would have done if the shoe was on the other foot), no complaining about not having any free time of his own, he gave the thumbs up with no hesitation.
He wins husband of the decade for that.
My training was taking place a thirty minute drive away from home. We would run at 7 am every Saturday until the weather got warmer, then we would run at 6. 6 am runs meant going to bed early on Friday and getting up at 4:30 on Saturday. It is a testament to how desperate I was, that I was willing to get out of bed in the middle of the night to do it.
As the runs got longer and longer on the weekend, I realized that marathon training was the perfect metaphor for being frustrated with parenting, with things that were out of my control, with life in general: I wanted to run far away. Since I couldn't run away from the crap in my life without losing the wonderful parts (my husband and kids), running for hours, thirty minutes from home became my salvation.
I did wind up completing the Chicago marathon (read about it here), along with a 28 mile warm up run a month before. I have honestly never felt prouder of an accomplishment than I do of that. Yeah, I traveled alone around Europe on very little money and I moved far away from my hometown at a young age; but those accomplishments were achieved before I had any real fear. The world of being a parent and the world of being a single, young adult looks very different and there is a good bit of fear involved. As much as I think that that teenager could learn from this 43 year old; I think this 43 year old could learn a lot from that fearless teen.
I don't want to be shaken out of stagnation by a health emergency or any more death. Too often it is a cataclysmic life event that makes us (me) think about what really matters. Why? Why can't I learn from my own glorious triumphs and bitter failures? Why do I not seek out my own greatness because of the fear of failure? Why am I so afraid of being poor that I can not figure out how to have money? Why is it easier to stay still, rather than move in a positive direction?
I think I have just answered my own question. It's not. It's not easier to stagnate. It's awful and soul crushing. It makes the fear bigger.
Who am I? Am I the middling house wife whose biggest accomplishment on any given day is doing all the laundry and dishes? Or, am I Adventurous Amy?
I think it was there because it seemed really, really hard; almost impossible. If I can do THAT, I reasoned, I could do just about anything. It wasn't that I had never run before; I had. When I was seventeen and going through my first, painful breakup, I ran as means to deal with my feelings. I ran a lot. I ran in the dark and came home so exhausted that my brain didn't have room for making me feel terrible. I slept, ran, went to school...repeat, for months. I lost about twenty pounds that I really didn't need to lose at the time. Lots of running and eating one meal a day will do that to you.
That spring, I came out of my funk, wiser, more driven and with a hard body to boot. How I envy that girl. 17 years later, plus three kids, running was not quite as easy as it had been in those days. My youngest was not quite four and my oldest was seven and a half. I was coming out of the constantly-sleep-deprived phase of parenting and smack in the middle of school-homework-IEP hell. I was starting to feel like maybe I needed to get a job; but really, I wanted to get a life beyond being "Mommy".
My husband, who has always been my loudest cheerleader, read the flier I brought home and said "do it!". No whining about giving up the next six months of Saturday mornings to take care of the kids while I ran (like I would have done if the shoe was on the other foot), no complaining about not having any free time of his own, he gave the thumbs up with no hesitation.
He wins husband of the decade for that.
My training was taking place a thirty minute drive away from home. We would run at 7 am every Saturday until the weather got warmer, then we would run at 6. 6 am runs meant going to bed early on Friday and getting up at 4:30 on Saturday. It is a testament to how desperate I was, that I was willing to get out of bed in the middle of the night to do it.
As the runs got longer and longer on the weekend, I realized that marathon training was the perfect metaphor for being frustrated with parenting, with things that were out of my control, with life in general: I wanted to run far away. Since I couldn't run away from the crap in my life without losing the wonderful parts (my husband and kids), running for hours, thirty minutes from home became my salvation.
I did wind up completing the Chicago marathon (read about it here), along with a 28 mile warm up run a month before. I have honestly never felt prouder of an accomplishment than I do of that. Yeah, I traveled alone around Europe on very little money and I moved far away from my hometown at a young age; but those accomplishments were achieved before I had any real fear. The world of being a parent and the world of being a single, young adult looks very different and there is a good bit of fear involved. As much as I think that that teenager could learn from this 43 year old; I think this 43 year old could learn a lot from that fearless teen.
I don't want to be shaken out of stagnation by a health emergency or any more death. Too often it is a cataclysmic life event that makes us (me) think about what really matters. Why? Why can't I learn from my own glorious triumphs and bitter failures? Why do I not seek out my own greatness because of the fear of failure? Why am I so afraid of being poor that I can not figure out how to have money? Why is it easier to stay still, rather than move in a positive direction?
I think I have just answered my own question. It's not. It's not easier to stagnate. It's awful and soul crushing. It makes the fear bigger.
Who am I? Am I the middling house wife whose biggest accomplishment on any given day is doing all the laundry and dishes? Or, am I Adventurous Amy?
Monday, November 18, 2013
My Reaction to the Article "The Preventable Death of Ethan Saylor" by Stephen Greenspan, Ph.D.
Here is the link so you can read it for yourself.
It has been shared many times since it came out last week. I've seen it on national Down syndrome groups pages and on some friends', as well. All I can wonder is: why? Are we so starved for press in the I/D community that we will cling to any scrap that blows our way?
Let me take a step back. I am glad that the horrific, tragic, TOTALLY PREVENTABLE death of Ethan Saylor is getting more and more press. I am glad it has not gone away. I am glad that others have taken some of the pressure off his family for getting their story told; but this? This is more victim blaming and there has been plenty of that, already. It is a clinical summation made up of sketchy details and inferences.
The reference to Ethan's IQ makes me want to climb through cyber space and throttle this guy. Who cares what his IQ was? For one thing, IQ tests for people with Down syndrome are not terribly accurate, especially when the tests were done years ago. And even if 40 IS an accurate IQ, who cares? Seriously? Is there in IQ threshold for watching movies? If so, what is it? Is no other measure taken into consideration?
"I would have thought such a movie beyond the comprehension level of someone with Ethan’s IQ level, but presumably he enjoyed the non-stop nature of the action." says Dr. Greenspan.
Again, seriously? Dr. Greenspan, with his many, many years of research and writing about intellectual disability should know very well that typically, a person with Down syndrome's receptive intelligence is much, much stronger than their ability to demonstrate their knowledge. So, just because Ethan would not necessarily be able to talk at great length about what it was he found so fascinating about the movie, he did enjoy it and he would have been able to discuss it on some level if events had not unfolded the way they had. Truthfully, none of that matters. It's none of the doctor's business why Ethan saw that particular movie.
Dr. Greenspan also writes about Ethan's weight being a factor in his death. This is pure nonsense. Anyone who has a crushed larynx will die from it without immediate medical attention; period. You cannot breathe when your airway is blocked, whatever your weight.
Dr. Greenspan blames Ethan for lashing out at the police officers. These officers WERE NOT IN UNIFORM! If they had been, maybe things would have been different. The officers were moonlighting as security guards. How was Ethan to know that they were really cops? He was trying to get more money, via his phone, for another ticket. In Ethan's mind, he was complying with the request that he purchase another ticket. Whether that was logical or not, is beside the point. In the few minutes the officers and management could have waited, without harming Ethan, his mom would have arrived, he could have had a new ticket, or he could have left. They refused to give him the opportunity to make the situation right. I find that indefensible.
Even without all of that, even if the officers were uniformed and Ethan was hitting and kicking (which I have not read that he was), what does it imply? That feeling threatened (with good reason, apparently) is a crime punishable by death? I know, I know, they didn't MEAN to kill him; but they did.
"Whatever the tolerance level that police departments have for using potentially deadly force (and apparently the tolerance level is fairly high in the Frederick County Sherrif’s department), one would like to think that are other departments and officers, including within the Frederick department, who would view the behavior of the three officers in this case as unprofessional. It was unprofessional because police officers, along with other professionals (such as therapists), are paid to accept a certain amount of abuse without responding in kind. They are also being paid to recognize when a subject is in an unstable state, and to practice responses intended to calm rather than inflame. Unfortunately, neither of those hallmarks of professionalism were demonstrated in this case." (emphasis mine).
I definitely think he has a point there.
The last part of the article gets to the heart of the matter, but doesn't tell us HOW to change things. We certainly need the how.
If there is any lesson to be learned from this tragic case, it is that the first instinct of first responders, as well as direct care staff, when dealing with immature behavior exhibited by brain-impaired people like Ethan Saylor, is tolerance combined with gentle insistence involving negotiation, both done in a spirit of love and attempt to understand the individual and help him or her to regain self-control.
On the last point, the doctor and I agree, but until we, as a society, have a better level of tolerance towards different communication styles, appearances and abilities, things like this will continue to occur. We blame IQ, or cognition, when really what is to blame is prejudice and intolerance for difference. How do we change minds when it comes to those with intellectual differences? When will this population be recognized as having equal rights under the law, when time and time again, we are shown that the rules are applied differently when you have a disability as seen here and here?
I realize that some will see this post as trying to have it both ways. Maybe I am, but I don't think so. I don't think it is wrong to suggest that waiting a few extra seconds before you decide to "subdue" someone when you SEE they have an obvious disability is unfair to the "typical" population. I think it is compassionate.
I am sure that Dr. Greenspan means well. I'm just not sure that his post has helped the cause of getting justice for Ethan.
It has been shared many times since it came out last week. I've seen it on national Down syndrome groups pages and on some friends', as well. All I can wonder is: why? Are we so starved for press in the I/D community that we will cling to any scrap that blows our way?
Let me take a step back. I am glad that the horrific, tragic, TOTALLY PREVENTABLE death of Ethan Saylor is getting more and more press. I am glad it has not gone away. I am glad that others have taken some of the pressure off his family for getting their story told; but this? This is more victim blaming and there has been plenty of that, already. It is a clinical summation made up of sketchy details and inferences.
The reference to Ethan's IQ makes me want to climb through cyber space and throttle this guy. Who cares what his IQ was? For one thing, IQ tests for people with Down syndrome are not terribly accurate, especially when the tests were done years ago. And even if 40 IS an accurate IQ, who cares? Seriously? Is there in IQ threshold for watching movies? If so, what is it? Is no other measure taken into consideration?
"I would have thought such a movie beyond the comprehension level of someone with Ethan’s IQ level, but presumably he enjoyed the non-stop nature of the action." says Dr. Greenspan.
Again, seriously? Dr. Greenspan, with his many, many years of research and writing about intellectual disability should know very well that typically, a person with Down syndrome's receptive intelligence is much, much stronger than their ability to demonstrate their knowledge. So, just because Ethan would not necessarily be able to talk at great length about what it was he found so fascinating about the movie, he did enjoy it and he would have been able to discuss it on some level if events had not unfolded the way they had. Truthfully, none of that matters. It's none of the doctor's business why Ethan saw that particular movie.
Dr. Greenspan also writes about Ethan's weight being a factor in his death. This is pure nonsense. Anyone who has a crushed larynx will die from it without immediate medical attention; period. You cannot breathe when your airway is blocked, whatever your weight.
Dr. Greenspan blames Ethan for lashing out at the police officers. These officers WERE NOT IN UNIFORM! If they had been, maybe things would have been different. The officers were moonlighting as security guards. How was Ethan to know that they were really cops? He was trying to get more money, via his phone, for another ticket. In Ethan's mind, he was complying with the request that he purchase another ticket. Whether that was logical or not, is beside the point. In the few minutes the officers and management could have waited, without harming Ethan, his mom would have arrived, he could have had a new ticket, or he could have left. They refused to give him the opportunity to make the situation right. I find that indefensible.
Even without all of that, even if the officers were uniformed and Ethan was hitting and kicking (which I have not read that he was), what does it imply? That feeling threatened (with good reason, apparently) is a crime punishable by death? I know, I know, they didn't MEAN to kill him; but they did.
"Whatever the tolerance level that police departments have for using potentially deadly force (and apparently the tolerance level is fairly high in the Frederick County Sherrif’s department), one would like to think that are other departments and officers, including within the Frederick department, who would view the behavior of the three officers in this case as unprofessional. It was unprofessional because police officers, along with other professionals (such as therapists), are paid to accept a certain amount of abuse without responding in kind. They are also being paid to recognize when a subject is in an unstable state, and to practice responses intended to calm rather than inflame. Unfortunately, neither of those hallmarks of professionalism were demonstrated in this case." (emphasis mine).
I definitely think he has a point there.
The last part of the article gets to the heart of the matter, but doesn't tell us HOW to change things. We certainly need the how.
If there is any lesson to be learned from this tragic case, it is that the first instinct of first responders, as well as direct care staff, when dealing with immature behavior exhibited by brain-impaired people like Ethan Saylor, is tolerance combined with gentle insistence involving negotiation, both done in a spirit of love and attempt to understand the individual and help him or her to regain self-control.
On the last point, the doctor and I agree, but until we, as a society, have a better level of tolerance towards different communication styles, appearances and abilities, things like this will continue to occur. We blame IQ, or cognition, when really what is to blame is prejudice and intolerance for difference. How do we change minds when it comes to those with intellectual differences? When will this population be recognized as having equal rights under the law, when time and time again, we are shown that the rules are applied differently when you have a disability as seen here and here?
I realize that some will see this post as trying to have it both ways. Maybe I am, but I don't think so. I don't think it is wrong to suggest that waiting a few extra seconds before you decide to "subdue" someone when you SEE they have an obvious disability is unfair to the "typical" population. I think it is compassionate.
I am sure that Dr. Greenspan means well. I'm just not sure that his post has helped the cause of getting justice for Ethan.
Friday, November 8, 2013
Why the R-Word Sucks with guest blogger, Nidhip Mehta
This post is a culmination of spending years trying to convey my feelings. You can read this year's r-word campaign posts here and here. I have written at least 427 other posts on the subject over the last 14+ years, but I will spare you those. This latest post came from hearing about Kat Von D and her lipstick line at Sephora. Long story short, they collectively decided that naming a lipstick "Celebutard" was a hilarious idea.
Celebutard - from the Urban Dictionary:
A famous stupid person. Typically refers to the current crop of vapid celebrities.
Similar, but not exactly the same as Celebutante:
A person of high society and wealth whose famous just for the fact of being rich and fabulous. A socialite who is "famous for being famous."
It seems that no one spotted the irony of a tattoo artist who is famous for having a reality show and for sleeping with Sandra Bullock's ex calling anyone out for being vapid, or famous for being famous. But, whatever. You can read more about that here.
Once the disability community got wind of it, it took about 24 hours of tweeting, sharing and public shaming to get Sephora to stop selling the offensively named shade. It was a victory, but a hollow one. I am glad that as a community we were able to mobilize and have our voices heard. I am troubled by the fact that it's a battle we have to keep waging.
Here's another great post from a friend, here.
In the midst of the fracas, a good friend of mine, Nidhip, decided to play Devil's advocate. He posed a few, well thought out questions asking why the r-word is so offensive. He got quite an eye/ear full from me on the subject. We had a little back and forth with no real resolution, just a lot of anger, hurt and frustration on my side. Again, I was getting nowhere and with someone who liked me and actually cared about my feelings! How was I ever going to get the point across to anyone else?
I went to bed fuming and in the morning I realized that getting upset was getting me exactly nowhere. To top it all off, I was going to quite possibly lose an old friend in the process. I did a little soul searching and then I wrote a note to Nidhip that said:
Hey. good morning! First of all, thanks for getting me so riled up last night, it made me really think about things. Second, sorry about telling you to get off your high horse. I have an equally tall one and don't like to have it pointed out to me. Anyway, I was thinking that this conversation is a good one. I want people to understand where I am coming from, but it is very hard if you are not in the same situation. It's frustrating, to say the least. From the outside, you might see it as a debate over a word (which, in the scheme of things, seems inconsequential) but for me and many others, it's a fight for inclusion, for dignity, for justice and for civil and human rights. The word merely is a reminder of how far we still need to go in these areas.
Is it not possible to divorce the word from its meaning, in the way idiot and moron have lost their original clinical meanings?
The only difference I see is that blacks have had (and in many cases, still need) their civil rights movement, while the civil rights movement for the disabled is still in it's infancy. You would be horrified if a school refused to accept a child because they were black today; but every day, schools refuse to accept children who learn differently, many without even giving them the chance to show that they can adapt in a mainstream classroom.
This happens today.
Yes, kids with i/d learn differently than other kids. And typical kids learn differently from each other. With creativity, love and support, everyone wins and everyone learns more. There is no excuse to leave some kids behind for any reason, whether it is sex (in some parts of the world, girls are still under-educated), race (hello? American south in the 1960's?), or ability (today, all over the world).
My intellectual rationalization would be that the r-word keeps people with intellectual disabilities separate from the rest of society the same way the n-word kept black people separated from society. Both words say "you are different, you are not worthy, you are not accepted". If you look at the history of the civil rights movement, you will see that many of the things that were done to black people are still being done to those with developmental disabilities. The only real difference is that not many have yet noticed that the disabled, as a group, are calling for their rights as human beings to be recognized. Like African American, women and gay people before them, people with disabilities are calling for equal treatment. Eliminating slurs against them must be a part of that movement.
Celebutard - from the Urban Dictionary:
A famous stupid person. Typically refers to the current crop of vapid celebrities.
Similar, but not exactly the same as Celebutante:
A person of high society and wealth whose famous just for the fact of being rich and fabulous. A socialite who is "famous for being famous."
It seems that no one spotted the irony of a tattoo artist who is famous for having a reality show and for sleeping with Sandra Bullock's ex calling anyone out for being vapid, or famous for being famous. But, whatever. You can read more about that here.
Once the disability community got wind of it, it took about 24 hours of tweeting, sharing and public shaming to get Sephora to stop selling the offensively named shade. It was a victory, but a hollow one. I am glad that as a community we were able to mobilize and have our voices heard. I am troubled by the fact that it's a battle we have to keep waging.
Here's another great post from a friend, here.
In the midst of the fracas, a good friend of mine, Nidhip, decided to play Devil's advocate. He posed a few, well thought out questions asking why the r-word is so offensive. He got quite an eye/ear full from me on the subject. We had a little back and forth with no real resolution, just a lot of anger, hurt and frustration on my side. Again, I was getting nowhere and with someone who liked me and actually cared about my feelings! How was I ever going to get the point across to anyone else?
I went to bed fuming and in the morning I realized that getting upset was getting me exactly nowhere. To top it all off, I was going to quite possibly lose an old friend in the process. I did a little soul searching and then I wrote a note to Nidhip that said:
Hey. good morning! First of all, thanks for getting me so riled up last night, it made me really think about things. Second, sorry about telling you to get off your high horse. I have an equally tall one and don't like to have it pointed out to me. Anyway, I was thinking that this conversation is a good one. I want people to understand where I am coming from, but it is very hard if you are not in the same situation. It's frustrating, to say the least. From the outside, you might see it as a debate over a word (which, in the scheme of things, seems inconsequential) but for me and many others, it's a fight for inclusion, for dignity, for justice and for civil and human rights. The word merely is a reminder of how far we still need to go in these areas.
I'd really like to write some more about it. I know I won't convince everyone, or maybe even you, but I would like to try and engage in healthy debate. As you can tell, debate is not easy for me. Arguing is fine if I don't truly care about the answer, but when I do...oh boy. I am all emotion. I know logically that a word should not hold so much weight, but emotionally, it does, it really does.
I'd like to try and work through this some more. Would you be okay with me putting your questions in a blog post and answering them? Or would you want to write something different? Or go back and forth? I think it could be a really good thing. If you don't want to add anymore, I understand, but if you would allow me to use your questions, I'd be grateful. Think about it.
And being the good guy that he is, he said this:
Hey, first of all, I just want to say I'm sorry again. I know with hindsight, you're thanking me, but I really should've gauged the situation better before opening up something which clearly has an emotional resonance. You're right, I tried to intellectualize something which, at its heart, is emotional. But I honestly think that it helps to do that when you're trying to create awareness or change minds. Which is why I was getting at you for simply saying that it shouldn't happen because it makes people angry. As you know, progressive thinkers like us do a lot of things that make other people angry, but that shouldn't stop us from doing it. Like wanting that anybody can marry anybody else, regardless of what the Bible says. That sure makes a ton of people angry, but I'm gonna go on wanting it.
Anyway, like I said last night, my questions came from a point of inquiry, not argument. I genuinely wanted to hear your point of view and well... I got it, I guess.
Sure, I'd be okay with my questions in your blog... after all, that was my point in bringing it up... to initiate discussion. But I really don't want to get anyone upset, let alone you. You are a great person and I admire you a great deal, but I want to respect your limits and tolerance as well.
And thanks for reaching out to me this morning. I really felt bad about upsetting you and regretted bringing it up. I admire that you're willing to put that aside and engage me again. That says a lot about you.
So, here is Nidhip's query. I will break it into parts in order to address different pieces of the issue; but first, here it is in it's entirety:
Ok, so my question is essentially this:
I sympathize with the feeling of being offended by a word or phrase. Ever since I learned that the R-word is offensive to some (particularly to those who have family members that are intellectually disabled), I stopped using it. I don't even use it when those people are not around, and I try to remind others when they use it. Also, I understand the negative connotation when the word is used to describe someone with Downs Syndrome or autism spectrum. It's really not appropriate, and it's not such a big thing to simply use another word.
What I don't completely understand is when the word is used outside of that context; when the intent has been changed from the original meaning. This happens in language. It happened with the words "moron" or "idiot" or "stupid", which were all used at one point as clinical descriptions of people with intellectual disabilities. These days, no one bats an eye or hesitates to use these words. Heck, even people who have family or friends with intellectual disabilities use these words, which a century ago had the same meaning and connotation as the R-word.
Is it not possible to divorce the word from its meaning? Can the perception of those who use the word be more nuanced? Shouldn't there be a distinction between those who use the word offensively and those who do not mean offense?
I'm not exactly saying that people should simply ignore it when people use the R-word, but that perhaps they should react in accordance with the intent in which the word was used, and not simply react from pure emotion.
I also think that in order to make people better understand why they should not use the R-word, the reason given should be more than "it makes me angry" or "you'll never understand unless it happens to you". I think these don't help the cause, primarily because unless the person involved is a friend or relative, no one really cares whether something they say makes some anonymous person angry. I believe in many things that make people angry, like feeling that gays should be able to marry or that all people should have access to affordable (or free) health care. The fact that this makes some people angry does not bother me in the least; it's a fundamental disagreement. So, I guess that in order to better understand the issue, I'd prefer to see a more intellectual rationalization for not using the word, as opposed to an emotional one.
Of course, what I prefer doesn't always matter. There may not be, after all, an intellectual rationalization. Maybe it should suffice that enough people (whatever that critical mass is) find it offensive. But the intellectual part of me wants to know where to draw the line, because it seems very fuzzy and, to be honest, hypocritical. Especially when I see the words "moron" and "stupid" being used all the time. I don't know, perhaps it simply has to do with the amount time that passes for a word to fully change its meaning. It's difficult to parse, unfortunately.
Again, I want to reiterate that if the word offends people who I like and admire and want to stay friends with, that's good enough for me. But it may not be good enough for everyone.
My response:
I think there are essentially three parts to this:
- Is it not possible to divorce the word from its meaning, in the way idiot and moron have lost their original clinical meanings?
- Shouldn't there be a distinction between those who use the word offensively and those who do not mean offense?
- Is there a way to intellectually rationalize why it is wrong?
Is it not possible to divorce the word from its meaning, in the way idiot and moron have lost their original clinical meanings?
First, some people are bothered by the words idiot and moron and imbecile because of their historical significance to people with intellectual disabilities. For myself, I feel that those words have evolved to a point that when someone says any one of them, a picture of a kid like mine does not pop into their heads. I haven't seen any offensive memes using a picture of a kid with Down syndrome and the word "idiot"; but I have seen plenty with the word "retard". That makes them different, as far as I'm concerned. Maybe it's the role of social media that makes this word different (for me) from the rest. It certainly plays a part.
Secondly, I don't wish to drag up every old word used in reference to people with i/d. I feel they have run their course, history has moved on and so should we. The difference with "retard" is that it IS in common use these days and because of that, it keeps anyone who could be called "retarded" by a doctor (even though it is going away in the medical field) apart from everyone else. It makes them the "other", not like us, not worth worrying about offending, maybe, not even quite human.
Thirdly, though I could wait for this word to become innocuous, I don't want to. I want to stand up now and say that it matters to me and it matters to my family and many, many families like mine. Why should my kid, who has been called a retard more times than I can count, have to hear that word in any form (including added "tard" to the end of other words)?
Shouldn't there be a distinction between those who use the word offensively and those who do not mean offense?
Why should the offender (even if it was not meant to offend) get away with impunity? I see it as a matter of simple humanity. Most people don't want to hurt people's feelings, even people they don't know. I think educating those who truly don't realize that their words are hurtful is important. It's not about getting angry (Nidhip: you seem to only see my anger and not my hurt. I'm wondering why?), though I do get angry about it. When someone uses the word "retard" and I am in earshot, more often than not, I use it as a teachable moment. I avoid calling people out in public unless they are being blatantly disrespectful, but I typically pull them aside later on and say something to the effect of "this is a hurtful word, I know you didn't mean it to be, but it is" and nine times out of ten, they are apologetic. Some (many) still use the word, but at least I have planted the seed. If they hear my voice in their heads the next time they say it, it might not feel as satisfying and hopefully, they will re-think it.
The reason I brought up being hurt versus being angry is that it is much easier (I think) to dismiss anger than it is to dismiss hurt. People get angry for all sorts of reasons (as Nidhip brought up) that I don't agree with. Frankly, I think much of their anger is misplaced. But hurt? I don't want to hurt people or be hurt. Knowing that the r-word can be hurtful should be enough.
While there is a difference between being deliberately hurtful (Hey, Retard!) and being unintentionally hurtful (That's so retarded!), the word still hurts. It is associated with being bad, stupid, ugly and foolish AND it may be a part of a doctor's report; therefore making it a part of a person with a diagnosis. Would you want any part of what makes you YOU be a slur?
Is there a way to intellectually rationalize why it is wrong?
I've said that to disability advocates, this is the N-word. Do we use the N-word in any form? No. Because most reasonable people get that any form of it is degrading and wrong. They wouldn't dream of saying "oh my god, you are such a nigger" to a friend who's acting silly. But, "you're such a retard" is fine. Why? What is the difference?
Shouldn't there be a distinction between those who use the word offensively and those who do not mean offense?
Why should the offender (even if it was not meant to offend) get away with impunity? I see it as a matter of simple humanity. Most people don't want to hurt people's feelings, even people they don't know. I think educating those who truly don't realize that their words are hurtful is important. It's not about getting angry (Nidhip: you seem to only see my anger and not my hurt. I'm wondering why?), though I do get angry about it. When someone uses the word "retard" and I am in earshot, more often than not, I use it as a teachable moment. I avoid calling people out in public unless they are being blatantly disrespectful, but I typically pull them aside later on and say something to the effect of "this is a hurtful word, I know you didn't mean it to be, but it is" and nine times out of ten, they are apologetic. Some (many) still use the word, but at least I have planted the seed. If they hear my voice in their heads the next time they say it, it might not feel as satisfying and hopefully, they will re-think it.
The reason I brought up being hurt versus being angry is that it is much easier (I think) to dismiss anger than it is to dismiss hurt. People get angry for all sorts of reasons (as Nidhip brought up) that I don't agree with. Frankly, I think much of their anger is misplaced. But hurt? I don't want to hurt people or be hurt. Knowing that the r-word can be hurtful should be enough.
While there is a difference between being deliberately hurtful (Hey, Retard!) and being unintentionally hurtful (That's so retarded!), the word still hurts. It is associated with being bad, stupid, ugly and foolish AND it may be a part of a doctor's report; therefore making it a part of a person with a diagnosis. Would you want any part of what makes you YOU be a slur?
Is there a way to intellectually rationalize why it is wrong?
I've said that to disability advocates, this is the N-word. Do we use the N-word in any form? No. Because most reasonable people get that any form of it is degrading and wrong. They wouldn't dream of saying "oh my god, you are such a nigger" to a friend who's acting silly. But, "you're such a retard" is fine. Why? What is the difference?
The only difference I see is that blacks have had (and in many cases, still need) their civil rights movement, while the civil rights movement for the disabled is still in it's infancy. You would be horrified if a school refused to accept a child because they were black today; but every day, schools refuse to accept children who learn differently, many without even giving them the chance to show that they can adapt in a mainstream classroom.
This happens today.
Yes, kids with i/d learn differently than other kids. And typical kids learn differently from each other. With creativity, love and support, everyone wins and everyone learns more. There is no excuse to leave some kids behind for any reason, whether it is sex (in some parts of the world, girls are still under-educated), race (hello? American south in the 1960's?), or ability (today, all over the world).
My intellectual rationalization would be that the r-word keeps people with intellectual disabilities separate from the rest of society the same way the n-word kept black people separated from society. Both words say "you are different, you are not worthy, you are not accepted". If you look at the history of the civil rights movement, you will see that many of the things that were done to black people are still being done to those with developmental disabilities. The only real difference is that not many have yet noticed that the disabled, as a group, are calling for their rights as human beings to be recognized. Like African American, women and gay people before them, people with disabilities are calling for equal treatment. Eliminating slurs against them must be a part of that movement.
Tuesday, November 5, 2013
I Love Teenagers
Teenagers get a bad rap.
Yes, they are moody and smelly and occasionally inconsiderate. They cause a disproportionate amount of car accidents for a variety of reasons, not limited to the fact that they don't get that death is a real thing that could happen to them.
Yes, they are moody and smelly and occasionally inconsiderate. They cause a disproportionate amount of car accidents for a variety of reasons, not limited to the fact that they don't get that death is a real thing that could happen to them.
I have recently noticed a lot of vitriol on Facebook surrounding the 13-19 year old set, to the point where it actually hurts my heart. Comments from a (hopefully) non-parent after a post about a father and son having issues at a restaurant:
an ambulance would need to be called when I finished whupping him into a pretzel....
Um, really? For talking back to his dad? Seriously? With no knowledge of what happened leading up to the incident, this poster has decided that serious bodily harm is the way to go. I find that really disturbing. And she wasn't the only one. There was a lot of horribly misplaced anger throughout. I hope they were all perfect growing up, or they probably got the shit kicked out of them for rolling their eyes.
In another post, a mother screams about the "fucking teenagers" that speed down her street. I mean, I get it. She was upset about her young daughter running out of the house and into the street. But, saying it that way makes it sound like a negative epithet. It sounds really hateful.
an ambulance would need to be called when I finished whupping him into a pretzel....
Um, really? For talking back to his dad? Seriously? With no knowledge of what happened leading up to the incident, this poster has decided that serious bodily harm is the way to go. I find that really disturbing. And she wasn't the only one. There was a lot of horribly misplaced anger throughout. I hope they were all perfect growing up, or they probably got the shit kicked out of them for rolling their eyes.
In another post, a mother screams about the "fucking teenagers" that speed down her street. I mean, I get it. She was upset about her young daughter running out of the house and into the street. But, saying it that way makes it sound like a negative epithet. It sounds really hateful.
If I yelled about the speeding Jesus Freaks that live down the street from us, would it sound hateful? Probably. It would definitely reflect my prejudice. It would also be true. They are the ones I am constantly yelling at when they fly through the neighborhood. And they have kids. I can't wait until they can drive. Grrr...
Isn't it hard enough to be a teenager without everyone hating you? I can't help but wonder if some of the anger these kids exhibit isn't a direct result of feeling it from other people.
I'm not saying that as a group, they are all wonderful and sweet and odor free. They absolutely are not. Having three teen-aged boys has introduced me to world of smells that I had not encountered outside a public toilet/perfume counter. The combination of feet, unwashed sheets and Axxe is an olfactory nightmare. They have zits and terrible eating habits and their manners are...questionable.
They are also the same babies that I nursed and rocked and sang to and clapped for. I still clap for them. And I still cry over their hurts. Their Twos were not so terrible and even when they were, they were so stinkin' cute.
Yes, they are harder to love when they roll their eyes and stomp out of the room and say hurtful things. Isn't that a part of being a good parent? Reaching down and finding the love? Reminding them that they are loved no matter what? Like the terrible twos before, they are finding their way in the world. They are learning new things and they are frustrated with what they are still trying understand. They really don't know their place in the world, yet. The difference is that no one is smiling over their tantrums now. No one really thinks they are cute; yet they are the same vulnerable kids they have always been.
If you are a parent, realize that your sweet little ones won't always be that way. Someday, that precious baby will look you in the eye and tell you she hates you and she'll mean it. And it will hurt. And you will still love her. And hopefully, she will remember that. You will battle, you will take away privileges, you will be deemed "totally unfair" and you will all learn lessons along the way.
If you are not a parent, please remember that you were a little jerk sometimes too and yet, you are still alive and hopefully, not as much of a jerk today.
If you are not a parent, please remember that you were a little jerk sometimes too and yet, you are still alive and hopefully, not as much of a jerk today.
Home should be a soft place to land and if that means bearing the brunt of teen-aged angst and frustration, then so be it. I dished it out and I can take it. This is where the rubber meets the road. If we all survive mostly unscathed, we have done our jobs well.
Just some (junk food) for thought.
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