Exclusive: First Autistic Presidential Appointee Speaks Out
When Ari Ne’eman walked onstage at a college campus in Pennsylvania in June, he looked like a handsome young rabbi presiding over the bar mitzvah of a young Talmudic scholar.
In truth, Ne’eman was facilitating a different kind of coming-of-age ceremony. Beckoning a group of teenagers to walk through a gateway symbolizing their transition into adult life, he said, “I welcome you as members of the autistic community.” The setting was an annual gathering called Autreat, organized by an autistic self-help group called Autism Network International.
Ne’eman’s deliberate use of the phrase “the autistic community” was more subversive than it sounds. The notion that autistic people — often portrayed in the media as pitiable loners — would not only wear their diagnosis proudly, but want to make common cause with other autistic people, is still a radical one. Imagine a world in which most public discussion of homosexuality was devoted to finding a cure for it, rather than on the need to address the social injustices that prevent gay people from living happier lives. Though the metaphor is far from exact (for example, gay people obviously don’t face the impairments that many autistic people do), that’s the kind of world that autistic people live in.
Now, as the first openly autistic White House appointee in history — and one of the youngest at age 22 — Ne’eman is determined to change that.
Read More http://www.wired.com/wiredscience/2010/10/exclusive-ari-neeman-qa/all/1#ixzz11bUrmXGc
Wednesday, October 6, 2010
Tuesday, September 21, 2010
So today I was reading Aspies for Freedom, and I came across a thread from a student with asperger's who just started college. He mentioned some of the problems he was having and asked for support and reassurance. I responded with a bit about my experience, basically just relating to what he said. I've just gone back and reread my post, and I don't even recognize myself. The kind of attitude I have is so negative and pessimistic, and I know that's how people think I am because I complain so much, but I am REALLY NOT. If I took a pessimistic attitude about my life I would probably kill myself. I wouldn't be able to deal with it. When you have as many fundamental flaws in the things that affect your quality of life (like your health, your support system, etc-- you know, the things I don't have), you HAVE to be optimistic or you won't make it. I complain about things so that I can make fun of them, so that I can vent it out and keep moving forward. I am optimistic to a fault, there is nothing that I don't believe I can fix and make better. I take every problem I hit head on with the expectation that I WILL make it better, which is really a lot of pressure to be under. That's just the way that I am. I know that it doesn't create the image of an optimistic person, but I generally have an almost delusional positive outlook on things.
But you'd never know that if you read what I said on AFF this morning.
"I am in my last year at my university now. This year is much more exhausting than last year was. I feel like I am walking around naked all the time, like everybody can see that there is something "wrong" with me and I can't cover it up-- and at least sometimes that is probably quite true. I really related to what you said when you mentioned steeling yourself to go to breakfast and then being unable to do it. I do that every day for everything I do, going to meals, going to class, going to appointments, contacting professors, etc and so forth. I manage to do most things, except go to the cafeteria-- that is additionally stressful because it is so loud and busy there that I wolf down my food and run out and then get sick from eating too fast, and I am allergic to milk so I can't eat most of the food anyway. But the result is like some sort of wound is just being continually ripped open and getting more and more raw... I think that's a good way to put it... society just rubs me raw. I'm not sure what advice to give you. I just tell myself that at the end of the day, I must be successful. I don't have to be happy or comfortable, I just have to be successful, and I only have to live like that for four years and then I can forget I ever had to do this. So I am able to force myself to do most of the things I need to do, even though they are physically painful. I really don't think that's the best attitude to have, but I don't know what else to do."
That just isn't Jill. I don't know how to be Jill, the way I know her to be, and still do this.
But you'd never know that if you read what I said on AFF this morning.
"I am in my last year at my university now. This year is much more exhausting than last year was. I feel like I am walking around naked all the time, like everybody can see that there is something "wrong" with me and I can't cover it up-- and at least sometimes that is probably quite true. I really related to what you said when you mentioned steeling yourself to go to breakfast and then being unable to do it. I do that every day for everything I do, going to meals, going to class, going to appointments, contacting professors, etc and so forth. I manage to do most things, except go to the cafeteria-- that is additionally stressful because it is so loud and busy there that I wolf down my food and run out and then get sick from eating too fast, and I am allergic to milk so I can't eat most of the food anyway. But the result is like some sort of wound is just being continually ripped open and getting more and more raw... I think that's a good way to put it... society just rubs me raw. I'm not sure what advice to give you. I just tell myself that at the end of the day, I must be successful. I don't have to be happy or comfortable, I just have to be successful, and I only have to live like that for four years and then I can forget I ever had to do this. So I am able to force myself to do most of the things I need to do, even though they are physically painful. I really don't think that's the best attitude to have, but I don't know what else to do."
That just isn't Jill. I don't know how to be Jill, the way I know her to be, and still do this.
Tuesday, September 7, 2010
It is a lonely feeling to sit in a room of 50 girls, being given a speech all about the program you're all about to join and what a tight knit community we'll all be, and knowing that come Springtime you very likely still won't have made any friends or established any meaningful connections with anyone in the group. Particularly when you know you have to try anyway, and particularly when you've seen this story repeat itself again and again and again. As I was explaining to someone who is neurotypical the other day, you kind of get used to this. You kind of get used to being shunned over and over and over again no matter how many times you follow that sagely NT advice of "put yourself out there," like it's really that easy. That isn't to say it ever stops being hurtful, no, if anything it gets worse. But eventually you stop trying to avoid pain. It's going to follow you everywhere you go anyway. You can't stop it and there is nothing you can do about it. Even if you're not the type to throw yourself into situations trying to make new friends, there will always be that person at the grocery store who gives you a weird look and you know that once again, whatever is so completely WRONG about you that everyone but you can see is rearing it's ugly head again, and it's not like you can just stop going to the grocery store. It's like that dream most everyone has where you realize you've gone to school in your underwear, and you try to cover up but you can't. You can't hide it, you're constantly going to be exposed and your vulnerabilities are constantly going to take hits. But there isn't any way around it. And people will tell you, oh, you just have to keep trying. And I suppose that's true, and that's why I continue to do it, however now that we are coming up on a full decade since the last time I managed to make new friends, it's hard to take people seriously when they say that. I don't think they quite understand the magnitude of the situation. Their oversimplification of the matter is even sort of insulting. Like really, I know you think you're helping, but I think if all I needed was for someone to tell me to put myself out there, don't you think I'd have done that ten years ago? It's not like I am shy and just refuse to try. I try over and over and over again and nobody is willing to meet me in the middle.
I am tempted to write something about autism to post on my door. Telling people I desperately want to be friends with them but that I don't know what I need to do to get to know them or how to tell if they like me, or that when they smile at me and my return smile doesn't seem sincere it isn't because I don't like them but because making facial expressions is so unnatural to me and I haven't quite got each subtle difference between them all down. Or, you know, maybe I should talk to my Resident Adviser or maybe even the Diversity Peer Educator, whatever that means, and see if they can help. But you toe a fine line there because if you admit how badly you want to make friends, which you kind of have to do in order to get them to understand that your blank-faced standing-in-the-corner behavior isn't out of reluctance to participate, then you seem emotionally needy and nobody respects you or wants to hang out with you-- as I discovered last year, thankfully with people I don't think I'd have hung out with anyway. And of course then there is the risk of people assuming I am retarded or weird or that it will be more of a chore to hang out with me than it really is. Then there is the risk of being shunned even worse and not having anybody left but the people who feel sorry for me. And what kind of friendship would that be?
This was my first week in my new dorm, and this quote from Liane Holliday Wiley (Pretending to be Normal) has never before rung quite so true...
"I had convinced myself that my high IQ and high academic achievement record meant that I was strong enough to handle whatever came my way. In realty, they only worked to help me fake my way to a false sense of security, a security that vanished and left me cold with fear the moment it was overwhelmed by the reality of my AS challenges.
I was hit hard when I had realized smarts were not enough to make it in this world. I was turned upside down when I had to admit I could not find anyone who saw things like I did. I was crippled when I found out it took more than I had to give to make new friends. Looking back, it is really no wonder I was never able to build any friendships in college. I was not very good at figuring people out. And so it seems, no one was very good at figuring me out either. Without friendships, my version of friendships that is, I had very little support. Without peers to show me how to fit in and how to make the most of what I had, I could not stay connected. I foundered."
I am tempted to write something about autism to post on my door. Telling people I desperately want to be friends with them but that I don't know what I need to do to get to know them or how to tell if they like me, or that when they smile at me and my return smile doesn't seem sincere it isn't because I don't like them but because making facial expressions is so unnatural to me and I haven't quite got each subtle difference between them all down. Or, you know, maybe I should talk to my Resident Adviser or maybe even the Diversity Peer Educator, whatever that means, and see if they can help. But you toe a fine line there because if you admit how badly you want to make friends, which you kind of have to do in order to get them to understand that your blank-faced standing-in-the-corner behavior isn't out of reluctance to participate, then you seem emotionally needy and nobody respects you or wants to hang out with you-- as I discovered last year, thankfully with people I don't think I'd have hung out with anyway. And of course then there is the risk of people assuming I am retarded or weird or that it will be more of a chore to hang out with me than it really is. Then there is the risk of being shunned even worse and not having anybody left but the people who feel sorry for me. And what kind of friendship would that be?
This was my first week in my new dorm, and this quote from Liane Holliday Wiley (Pretending to be Normal) has never before rung quite so true...
"I had convinced myself that my high IQ and high academic achievement record meant that I was strong enough to handle whatever came my way. In realty, they only worked to help me fake my way to a false sense of security, a security that vanished and left me cold with fear the moment it was overwhelmed by the reality of my AS challenges.
I was hit hard when I had realized smarts were not enough to make it in this world. I was turned upside down when I had to admit I could not find anyone who saw things like I did. I was crippled when I found out it took more than I had to give to make new friends. Looking back, it is really no wonder I was never able to build any friendships in college. I was not very good at figuring people out. And so it seems, no one was very good at figuring me out either. Without friendships, my version of friendships that is, I had very little support. Without peers to show me how to fit in and how to make the most of what I had, I could not stay connected. I foundered."
Friday, August 27, 2010
Saturday, July 31, 2010
A religious post...
Recently I participated in a religious discussion on a message board, and I thought it would be nice to post my musings here. I was raised (albeit haphazardly) as a catholic, and reverted to atheism at the age of about 7. At the age of 19, I realized that stranger things have happened in my own largely insignificant life than the existence of a higher power, and I decided it would be an interesting intellectual exercise to give believing in one a try. I found it to be a healthy and rewarding lifestyle and so I have kept with it. I identify as a Christian because I use the bible and enjoy christian sermons, but I suspect most christian sects would find they don't have as much in common with me as I see myself as having in common with them.
Here is what I wrote....
In my book, the only rule I believe god cares if I follow is that I be good to myself and others to the best of my judgment and ability. I don't believe that he would turn his back on me unless I failed to do that.
At that point, someone asked me the following...
"If what you say here is true, then you should abandon your God in favor of a more righteous self. "
And here was my response...
That would be silly, since in my opinion the most righteous thing you can do is forgive those who fail as long as they are doing their absolute best. At least in a spiritual sense, it's not as though I think we shouldn't have prisons-- though I believe in them more from either a rehabilitative standpoint OR a separation-from-society-as-a-safety-measure standpoint rather than punishment.
Another asked...
"What does 'good to myself and others to the best of my ability and judgment' mean, please? No offense intended, I just want to know. Good is a very complicated subject!"
And here was my response...
It's a good question! I am not offended at all. I believe, personally, that when I encounter an ethical or moral situation, it is my spiritual responsibility to honestly evaluate what I think is the "right" thing to do-- it is so vague and there are so many varying factors it is difficult to come to a concrete correct answer, all I can do is use my best judgment and decide and hope for the best. I think that as long as I do that, my god will support me even if it turns out I have made a mistake. In my mind, the only way to make god turn away from you is for you to purposefully turn your back on righteousness-- which, to me, would mean to knowingly do something to wrong another (or yourself) and not attempt to make things right upon realizing a mistake. There are people who do this all the time. I don't believe that god approves of them doing that, and that in order to have god's support they need to fix their ways. Though, I think you'd have to be a deeply evil person for him to forsake you altogether. That's just my opinion.
When I was growing up, I was taught that the catholic god is a just and loving god and all you have to do is ask for forgiveness and he will forgive your sins, but if you're late to catechism, don't go to mass, don't raise your children as catholic, sleep with someone of the same sex, etc etc then you are going to hell. Those concepts seemed mutually exclusive to me, and I think it is much harder to end up in hell than that-- I'm not even sure if I believe in hell. I think those sorts of concepts are constructs designed by the church to manipulate the masses, I don't believe god would truly behave in that way. It contradicts everything else we are taught about him, which is what led me to atheism as a child to begin with. I don't think god would begrudge me doing what I truly and honestly believe is the right thing. I think it is much more righteous to do that than to follow some book to the letter. He gave us brains and consciences and hearts because he wanted us to use them. I believe that is a large part of what makes up the soul, and to follow them is honoring the soul he gave you. It is not easy to defy the sense of others, especially those in authority, in order to do what you believe deep in your soul is the right thing to do. It is a lot easier, for most, to go with what you are told without considering for yourself what you believe god would want you to do based on your relationship with him. I think god wants us to step up to that challenge.
ETA:
In response to this segment of conversation...
"At that point, someone asked me the following...
"If what you say here is true, then you should abandon your God in favor of a more righteous self. "
And here was my response...
That would be silly, since in my opinion the most righteous thing you can do is forgive those who fail as long as they are doing their absolute best. At least in a spiritual sense, it's not as though I think we shouldn't have prisons-- though I believe in them more from either a rehabilitative standpoint OR a separation-from-society-as-a-safety-measure standpoint rather than punishment."
I received this response...
"You forgot to mention how what you would do is related to how anything god want done. Which is what your quoted text in my post implied."
And here is how I replied...
"I just think the only thing god wants me to do is to do my best to do good for myself and others, as defined in my previous post. I organize fundraisers for nonprofits that need it, I volunteer, I advocate for those that can't, and I lend a hand to anyone that needs it as much as I can. I have devoted my entire life and professional career to public service, at a great cost to myself, and strive to find ways to do more. I hold myself to a high moral standard in my daily interactions with people and with the world around me in an attempt to respect and support all of god's creations. I believe that is what he wants from me. I believe he wants me to do anything I can do to leave this world a better place than it was when I was born into it. I believe that is what we are born to do. Anyone else is welcome to believe whatever they want."
That is all for now.
Here is what I wrote....
In my book, the only rule I believe god cares if I follow is that I be good to myself and others to the best of my judgment and ability. I don't believe that he would turn his back on me unless I failed to do that.
At that point, someone asked me the following...
"If what you say here is true, then you should abandon your God in favor of a more righteous self. "
And here was my response...
That would be silly, since in my opinion the most righteous thing you can do is forgive those who fail as long as they are doing their absolute best. At least in a spiritual sense, it's not as though I think we shouldn't have prisons-- though I believe in them more from either a rehabilitative standpoint OR a separation-from-society-as-a-safety-measure standpoint rather than punishment.
Another asked...
"What does 'good to myself and others to the best of my ability and judgment' mean, please? No offense intended, I just want to know. Good is a very complicated subject!"
And here was my response...
It's a good question! I am not offended at all. I believe, personally, that when I encounter an ethical or moral situation, it is my spiritual responsibility to honestly evaluate what I think is the "right" thing to do-- it is so vague and there are so many varying factors it is difficult to come to a concrete correct answer, all I can do is use my best judgment and decide and hope for the best. I think that as long as I do that, my god will support me even if it turns out I have made a mistake. In my mind, the only way to make god turn away from you is for you to purposefully turn your back on righteousness-- which, to me, would mean to knowingly do something to wrong another (or yourself) and not attempt to make things right upon realizing a mistake. There are people who do this all the time. I don't believe that god approves of them doing that, and that in order to have god's support they need to fix their ways. Though, I think you'd have to be a deeply evil person for him to forsake you altogether. That's just my opinion.
When I was growing up, I was taught that the catholic god is a just and loving god and all you have to do is ask for forgiveness and he will forgive your sins, but if you're late to catechism, don't go to mass, don't raise your children as catholic, sleep with someone of the same sex, etc etc then you are going to hell. Those concepts seemed mutually exclusive to me, and I think it is much harder to end up in hell than that-- I'm not even sure if I believe in hell. I think those sorts of concepts are constructs designed by the church to manipulate the masses, I don't believe god would truly behave in that way. It contradicts everything else we are taught about him, which is what led me to atheism as a child to begin with. I don't think god would begrudge me doing what I truly and honestly believe is the right thing. I think it is much more righteous to do that than to follow some book to the letter. He gave us brains and consciences and hearts because he wanted us to use them. I believe that is a large part of what makes up the soul, and to follow them is honoring the soul he gave you. It is not easy to defy the sense of others, especially those in authority, in order to do what you believe deep in your soul is the right thing to do. It is a lot easier, for most, to go with what you are told without considering for yourself what you believe god would want you to do based on your relationship with him. I think god wants us to step up to that challenge.
ETA:
In response to this segment of conversation...
"At that point, someone asked me the following...
"If what you say here is true, then you should abandon your God in favor of a more righteous self. "
And here was my response...
That would be silly, since in my opinion the most righteous thing you can do is forgive those who fail as long as they are doing their absolute best. At least in a spiritual sense, it's not as though I think we shouldn't have prisons-- though I believe in them more from either a rehabilitative standpoint OR a separation-from-society-as-a-safety-measure standpoint rather than punishment."
I received this response...
"You forgot to mention how what you would do is related to how anything god want done. Which is what your quoted text in my post implied."
And here is how I replied...
"I just think the only thing god wants me to do is to do my best to do good for myself and others, as defined in my previous post. I organize fundraisers for nonprofits that need it, I volunteer, I advocate for those that can't, and I lend a hand to anyone that needs it as much as I can. I have devoted my entire life and professional career to public service, at a great cost to myself, and strive to find ways to do more. I hold myself to a high moral standard in my daily interactions with people and with the world around me in an attempt to respect and support all of god's creations. I believe that is what he wants from me. I believe he wants me to do anything I can do to leave this world a better place than it was when I was born into it. I believe that is what we are born to do. Anyone else is welcome to believe whatever they want."
That is all for now.
Monday, July 26, 2010
"Imagine if you asked her to be responsible for turning your oven off at 3pm. She's going to be in your house all day anyway, and all she has to do is turn the oven off at 3pm. You can't ask anything else of her for that day. She has to remember to turn the oven off at 3, so she can't possible go anywhere, do anything, etc. because she has this job she has to do at 3pm."
That sounds a bit like my life. Only I have to do eighteen million things a day anyway so I just end up screwing up half of them because I can only remember to do one thing at a time, and even if I have a list to remind me and go one item at a time, I still get stressed out and bogged down and eff half of them up. I wish my only job were to turn the oven off at 3pm. I feel like then I would feel normal. Which is really not normal at all and doesn't bode well for my future productivity. Well, crap.
That sounds a bit like my life. Only I have to do eighteen million things a day anyway so I just end up screwing up half of them because I can only remember to do one thing at a time, and even if I have a list to remind me and go one item at a time, I still get stressed out and bogged down and eff half of them up. I wish my only job were to turn the oven off at 3pm. I feel like then I would feel normal. Which is really not normal at all and doesn't bode well for my future productivity. Well, crap.
Subscribe to:
Posts (Atom)
