Wednesday, December 23, 2009

Sullivan gets it wrong on Ari Ne'eman again

I see the left brain right brain no brain blog is at it again with attempts at damage control when autism's gadfly exposed Ari Ne'eman for being appointed to the national council on disabilities when he has stated in the past that he does not believe that autism is a disability. In the original essay from which I quoted Ne'eman stated the words "difference is not disability". I won't bother linking to the essay because it has now been changed and I have linked to it and quoted the essay as it originally stood in my previous post and the interested reader can see these. In the changed essay Ne'eman wrote that difference is only disability when it is not accommodated for. Sullivan quoted this changed statement and neglected to acknowledge that the essay was later edited. He did not bother to quote the original essay. Even with the changed essay I disagree with Sullivan's statements that this is different from saying that autism is not a disability. Even in the changed essay Ne'eman is still implying this, though giving himself some leeway. Though Ne'eman's changed statement really does not change the fact that he is still stating that autism is not a disability, at least given the standard definition of disability, Sullivan is trying to claim that those of us who are unhappy about Ne'eman's appointment to the council are misquoting what he said. I suppose I should have taken a screen shot of Ne'eman's original essay to show that Sullivan and other Ne'eman supporters are really being dishonest in stating that Ne'eman never stated that autism was not a disability.

The origin of Ne'eman editing the essay where he originally wrote difference is not disability probably goes back to another pathetic attempt at damage control on Sullivan's part where Sullivan made tons of factual errors and neglected to do the necessary research that Ne'eman in fact had said that autism is not a disability. It was autism's gadfly who did the research showing Ne'eman in the past had written in an essay the words "difference is not disability" and had in fact stated that autism is not a disability. Ne'eman then stated:

As for the comment made about my Jewish Week article, I don’t recall saying at any point there that autism wasn’t a disability – only that it was not a disease, something I think exemplifies the neurodiversity position much better. I did seem to imply it though with the phrase “difference is not disability”. Though the phrase is technically true, I shouldn’t have phrased it that way. I was wrong to do so – and if that is the worst mistake I’ve made or ever will make in print, I’ll count myself lucky. Fortunately, I have years of advocacy work and public statements that show my work in the Disability Rights movement as a person with a disability.

So at the very least Ne'eman does admit to having made an error in the original article. He then went back and edited the original article to give himself some wiggle room.

Having quoted the pertinent phrases of the article as it originally stood as I have done in my previous post where I talked about my take on Ne'eman's nomination to the council, I stand by my statement that the context in which "difference isn't disability" Ne'eman was stating unequivocally that he (at least at the time) did not believe that autism is a disability. His statement that he never said autism was not a disability certainly is not true and there is no doubt of this. Sullivan and the other ND's can put all the spin on it they want but I don't believe there is any other way that Ne'eman's comments can be construed. It is irrelevant that he has lent his time and efforts to legislation and organizations that have used the term 'disability'.

The only thing that Sullivan does get right in this piece is that the efforts on my part and others who don't want Ne'eman appointed to the council will most likely be futile. Nominations to the NDC are most likely routinely confirmed as they would not generate enough controversy or have enough people complain. These are probably not like nominations to the supreme court where a controversial candidate gets scrutiny and enough people would complain to their senators and they would be blackballed in the case of Robert Bjork and nearly blackballed in the case of Clarence Thomas.

If a nomination to the NDC were in the same league as a nomination to the supreme court, I can't help thinking of the grilling that Ne'eman would be getting in a subcommittee of the senate about his previous statements.

17 comments:

farmwifetwo said...

::grins:::

Thanks Jonathon.

jonathan said...

your welcome, farm wife

farmwifetwo said...

Hope you and your family have a good Christmas this year. The running starts here tonight until the 28th.

Merry Christmas.

navywifeandmom said...

Great detective work, Jonathan!

Stephanie Lynn Keil said...

A major reason why autism is so horrible, not just for the LFA but for those with HFA/AS, is that having satisfying relationships, which studies show is the true key to happiness, are very difficult, if not impossible, for many with autism.

Someone has been trying to argue with me that people living in African poverty would be envious of my life because I have more material wealth. But studies show (time and time again) that the Maasai in Kenya (and others who are not materially wealthy), who live in huts made of sticks and dung and who have no electricity, running water or modern conveniences reported to be just as happy as American millionaires!

Seriously, having a social disability and being unable to connect with other human beings, which is the fabric of life, is one of the most horrible things on the planet.

And I notice that all of those who embrace Neurodiversity have friends and/or are married. ND keeps trying to tell me I am "jealous" of them because of success (or something) but no, I'm jealous because I wish I could have satisfying relationships like they do! They just can't seem to fathom that autism is horrible because having loving and caring relationships is the fabric of life, not money.

Throwing money at people with autism and having them be "successful" e.g. attend college, have a career, etc. isn't going to guarantee they won't be miserable because they could very well still be very lonely and depressed because they have a complete inability to connect with other people.

Autism Reality NB said...

Good work Jonathan. Ne'eman's view that autism is not a disability should not be hidden by a spin job.

farmwifetwo said...

My children are very social. It's a stereotype that IMO numerous ND's like to claim those with autism are not social. That it's "OK" to live without friends, family, sex.... (I have always wanted to use that word :) ) Actually I've always wanted to ask them when they say to "just give them a little more help"... "Does that include in the bedroom???" ::eye-roll::

http://aspergersquare8.blogspot.com/2009/12/how-grinch-tried-to-steal-autistic-self.html

http://aspergersquare8.blogspot.com/2009/12/siblings-of-neurotypicality-suffer-most.html

Hey... I see she didn't like the fact I called them on it over on Kristina's blog. I hope then they have a dull boring Xmas sitting at home whining about the fruitcake and comparing their trench coats :) We're going out, having friends in, and having fun... But, it's still upsetting to watch a non-verbal child attempt to socialize, when he doesn't know how. Or sit and watch him play alone with his toys. And no... it's not "ok"... It's not his "fate"... He shouldn't "suck it up".... It's wrong to claim that being "alone" is "ok".

You're right Stephanie - What's the point to life if all you can do is sit alone all day and not be part of it??

They don't get it... at all. B/c they aren't alone.

I remember Temple Grandin mentioning in her presentation that she was happy that she didn't have the "social" part because she wasn't lonely. And she thought it would be worse being social and not knowing how to cope.

JediKnight2 said...

Farmwife,

Actually, Temple Grandin has said numorious times and written in her "Thinking in Pictures" book that her work takes over her life, and if it wasn't for that, she'd have no life for she isn't a social person.

That's simply because she was lucky to not have any learning disabilities except for when it came to algebra and learning foreign languages. If she hadn't gotten expelled from her high school, she never would have met her mentor in boarding school to help her develop her interest in science. She was also lucky to have her aunt help her develop her interest in cattle. Basically, Temple is lucky to be blessed with the many wonderful talents she possesses INSPITE of her disability. All she needed was some guidance and she has accomplished her goals despite receiving a diagnosis of "brain damaged" as a toddler.

Now if you compare Temple to someone like me, I'm clearly more disabled than her. The only areas of strength I'm likely better at than her are in computers, higher abstract reasoning concepts and social skills. At least I'm a nicer person to talk to, but I still don't have the greatest social skills and abstract reasoning concepts in the first place. I also take a bit longer to speak and process information I'm receiving due to my MRELD. Sadly, this affects my true potential to achieve my goals to a full-extent. I may be good with computers, but I'll never be able to earn a second bachelor's or earn a master's degree in computer science or engineering. I couldn't handle advanced-level C++ and Java courses. Even if I made it through one or two classes, I'd likely pass them due to receiving extentions for turning in my assignments, from going to the computer lab, and/or from researching the concepts online.

The best I could probably do is database programming with Structured Query Language (SQL), Visual Basic, basic web development using Microsoft Web Expression or Dreamweaver, hopefully Javascript and C#, and hopefully networking (I want to give that a shot but what happens if I like it and give the three additional classes within Cisco networking a shot, and it turns out it's harder than I expected?). And even if Neurodiversity members found out about me and finally saw some "value" in me, what good does it do to initiate and sustain a conversation about computers when I either already know about it, or I find out something new from someone but he/she isn't even correct or I forgot about it or don't care or whatever, and I don't even know if I'll have an IT job? It's not like I'll be awarded with anything worthy. Besides, we always hear about those so-called aspie computer programmers, but why don't we hear about a lot of other aspies who are into other fields of computers like database programming or networking?

JediKnight2 said...

My problems are severe enough to the point where I'll inform my friend affected with cerebral palsy after he asked me who I'm supposed to see ("The secretary", I tell him) since he forgot what he read in the e-mail or didn't read through everything carefully that I'm supposed to meet with the secretary at the school's computer department since the chairman won't be in his office next week, but his automated e-mail client sent me a message displaying the schedule for the next two weeks, and that the secretary will be in next Tues. and Wed. in a certain room number when it's not guaranteed she'll advise me. Oh wait, she's a damn secretary, not an advisor! Duh, I should have thought this through more carefully after my friend with cerebral palsy informed me the e-mail I received was automated! He had to repeat it to me again, but I didn't understand right away why he came across to me like I didn't listen to him (he has some sort of oral-motor speech impairment so part of it was on him).

Oh wait, now I remember why my friend explained the whole thing to me. I told him on the phone shortly after I forwarded the e-mail to him that the chairman e-mailed me the info. when he didn't do it on his own (since I forwared the e-mail to him to let him know what I found out when asking about a course substitute), but I ended up having to have the whole thing explained to me as if I was NOT capable AT ALL of understanding the whole thing (the e-mail was sent to me on Saturday night- Duh! And I didn't understand why I had to be filled in with that piece of information by my friend when I didn't even ask him). Well, yeah...hopefully all you readers get the point that this is an example of what it feels like for me to have MRELD (what I explained above and how I moved on to a different paragraph on purpose to explain how the whole situation actually happened) except I could get into different arguments with my parents (though I'm improving since I'm taking meds to help me move on and not get 'stuck' over my mistakes and seeing my speech-language pathologist), yet avoid arguing with my brother like I started doing when I was about 9 years old, that are altered a bit due to the way NTs communicate among one another and the pieces I have to connect and hold within my short-term working memory.

Fortunately, most aspies don't experience those problems, and plenty of people with high functioning autism don't have them either so it's easy for them to not see themselves as disabled, especially without the problems of accidently calling something by the wrong item, place or person when in conversation regradless if they were aware they said the wrong word or not.

Cyberman said...

Well said Stephanie, it just goes to show how little ND nutjobs understand autism.


Cyberman

farmwifetwo said...

JediNight,

What I find annoying is that ND's like to perpetuate the stereotypes.

That most autistics aren't social... gave that link aready... yet I have 2 that keep asking when we're going to Grandma's today... Yes, even the 8yr old autistic one says "Grandma's house??", especially since he knows there's more presents. He's VERY into Xmas this year... so much he unrapped his cousin's gifts this morning.

That most autistics are computer genius'. Mine use a computer... and well... but they are not genius'.

That autistics have wonderful memories... nope. Eldest has poor short term and very good long term. Younger - average.

That instead of acknowledging that the Skye Walker's happen and work to prevent it... they simply ignore it. Instead of acknowledging that autistic children wander off... they simply ignore them. Instead of acknowledging that negative outcomes occur and agree that social and behaviour must be taught... they say - or did before their hero changed his mind - "it's a difference, it's "ok"".

True neurodiversity is acknowledging the good, the bad, and even the ugly. True neurodiversity is to work towards positive, independant outcomes for all persons with autism. True neurodiversity, is acknowledging that some people don't wish to be autistic, that some people wish to have family, friends, lovers, jobs, homes.... That "just give them a little more support" is a token gesture without any substance. What support?? Speech, language, behavioural, social, ducation, medications, biomed... are all seen as "curing". "Curing is bad" is their mantra. So what supports... someone to babysit them?? What's the quality of life in that??

To refuse people the ability to become more,is what oppressive governments have done for generations. To refuse freedom of speech and opinion,is what oppressive governments have done for generations. To refuse freedom of choice, is what oppressive governments have done for generations.

ND, the Hub, is no different than those gov't's. Their refusal to allow this blog or Harold's or Stephanie's on the Hub.. is proof of that. I may not always agree with them... and will say so :) But, I'd never refuse them the right to voice their opinion.

Adrianna said...

Farm Wife Two,

I couldn't help but notice you making a lot of comments about people who are "alone." Clarify what you mean by alone...people who are alone by choice or people who are alone because their social skills force them to be? Because autistic people, like all other people, can be either introverts of extroverts. If an autistic person desperately wants to be social, as he is an extrovert, but can't be because he is autistic, then that is not okay.

But if an autistic person is an introvert and is happy to be alone, what's the problem? In fact, as an introvert, I am grateful for my social deficits because it gives me an "excuse" to spend most of my time alone. People don't ask me dumb, rude questions about my sex life because they assume that because I am autistic, I must not have one. Fine by me.

They shouldn't be asking questions like that whether I am autistic or not, but leave it to people to have zero class.

Actually, that is one of the main problems with ND. They assume that EVERY person who isn't social is autistic, when in reality, they might just be introverts. In fact, I think many ND club members who claim to have Asperger's are just introverts. And this is damaging to autistic people who are extraverts and whose condition damages their mental health on that front. So you brought up a good point.

JediKnight2 said...

"What I find annoying is that ND's like to perpetuate the stereotypes."

They sure do.

"That most autistics aren't social... gave that link aready... yet I have 2 that keep asking when we're going to Grandma's today... Yes, even the 8yr old autistic one says "Grandma's house??", especially since he knows there's more presents. He's VERY into Xmas this year... so much he unrapped his cousin's gifts this morning."

The 8-year-old son of yours sounds similar to the way I sounded when I was a bit younger, only at that age I was more verbal and talkative. I would ask my mom questions (about the family tree with who's related to who, even if she answered my questions since I didn't process everything or needed an explanation if I was given an answer that wasn't direct enough for me, for example) and I'd have to hear the same answer over again at times, regardless if I asked about it or not because those were facts that I was trying to stick inside my head while my mom was just explaining this stuff to me in conversational format. I'd basically stick to following what my parents (mom in particular)
were doing around the house without ever having a real full-blown conversation with them or my brother and I'd have to have some time to myself to play the same Nintendo video games and watch the same movies/shows I'd stick with at certain periods of my life.

One thing I do remember when I was precisely 8 years old was that my grandpa learned how to tie my shoes. In fact, I just remembered that I included this as an event in my timeline for an assignment when I was in the 3rd grade at my Hebrew school I attended from then until the end of 5th grade. I even included this in an 8th grade history assignment where I literally laughed out loud and acted up because I didn't think about how stupid I'd look in front of the class. I had turned 14 on that day (I actually remember it being Friday and I came home feeling bad about myself throughout the rest of the weekend as I pictured myself as Fez, the foreign exchange student, from "That 70's Show" and the group of teens from the show as the rest of my class). I actually told a boy in my class who wanted to know if I was autistic that I had Asperger's after hesitating for like 10 mins. as he asked me questions about how I'd play with a toy car that was in the classroom amoung other questions.
Then at the end of the school day, I recall my dad and brother pointing out to me that this one guy standing outside the carpool lane talking to one or two other guys who were in my class the previous two years as well as the current year this was taking place who came back to my Jewish day school after he'd been in Israel for a couple years (I didn't know him well enough yet) were making fun of the way I was walking. I didn't like the judgements they were making, but I kept my mouth shut when my brother claimed I was wrong despite the fact that guy who came back to my school was being nice to me toward the end of that week. In fact, he even worked with me on a project at his house, and I slept over. In my mind, my brother always seemed to know better than me and know more than me despite his opinions seeming like they were wrong since he's younger and is the normal one.

"That most autistics are computer genius'. Mine use a computer... and well... but they are not genius'."

Same with me, but when it came to video games, my brother was quicker to figure out how to beat a game and had the executive functioning skills to read through an entire video game guide or Nintendo Power magazine for certain games.

JediKnight2 said...

"That autistics have wonderful memories... nope. Eldest has poor short term and very good long term. Younger - average."

I have a weak short-term working memory but a pretty good long-term memory.

"That instead of acknowledging that the Skye Walker's happen and work to prevent it... they simply ignore it. Instead of acknowledging that autistic children wander off... they simply ignore them. Instead of acknowledging that negative outcomes occur and agree that social and behaviour must be taught... they say - or did before their hero changed his mind - "it's a difference, it's "ok""."

Exactly!!! And the "hero" could never be someone like me. I was always the follower when relating to certain autistics who seemed to be higher-functioning than me intellectually for years.

"True neurodiversity is acknowledging the good, the bad, and even the ugly. True neurodiversity is to work towards positive, independant outcomes for all persons with autism. True neurodiversity, is acknowledging that some people don't wish to be autistic, that some people wish to have family, friends, lovers, jobs, homes.... That "just give them a little more support" is a token gesture without any substance. What support?? Speech, language, behavioural, social, ducation, medications, biomed... are all seen as "curing". "Curing is bad" is their mantra. So what supports... someone to babysit them?? What's the quality of life in that??"

Yeah, and you know what? That's their problem! If I had just spoken up for myself on how I really felt and I was dumped by some autistics, then that's their problem. Too bad one of my few strengths is seeing what's right and wrong, yet I couldn't apply that skill.

"To refuse people the ability to become more,is what oppressive governments have done for generations. To refuse freedom of speech and opinion,is what oppressive governments have done for generations. To refuse freedom of choice, is what oppressive governments have done for generations.

ND, the Hub, is no different than those gov't's. Their refusal to allow this blog or Harold's or Stephanie's on the Hub.. is proof of that. I may not always agree with them... and will say so :) But, I'd never refuse them the right to voice their opinion."

Farmwife, you've made my night! :)
Perhaps I could change that someday, but hopefully other plans don't fall in my way such as my parents telling me I have to first get a job and wonder what makes me think I can make such changes for I'm a disabled person who's never had any working experience, especially in the government, but I'll just have to remind them that I can't be any worse than George Bush or Ari Ne'eman once I explain to them who he is and what he's up to.

Thank you so much, Farmwifetwo! :)

Anonymous said...

Adrianna, very few people (autistic or not) are introverted to the extent Temple Grandin is. Most introverts are not asexual and able to live as hermits; they still yearn for a life partner and few close friends, family to confide in.

Roger Kulp said...

Anonymous said...
Adrianna, very few people (autistic or not) are introverted to the extent Temple Grandin is. Most introverts are not asexual and able to live as hermits;they still yearn for a life partner and few close friends,family to confide in.


Actually,a lot of us,myself included,are even more introverted,and in fact do find the idea of talking to another human being,let alone actually touching one as difficult,scary,and repugnant as making eye contact.That includes shaking hands,sexual intercourse, kissing,you name it.It may be all due to sensory disorders.and if you have autism,without sensory disorders,you don't have this problem.

I doubt this was the case with Ms. Grandin,but I had serious problems in sexual development.I never developed any sexual urges,or desires.My voice never changed.I have never had any body hair from the neck down.I have no upper body muscles,you name it.Yet I have always had testosterone levels in the 3s.I now know I can't metabolize it.

I have heard stories from parents on my Yahoo! groups,about their children who have made incredible recoveries,and now have all this newfound affection towards,and empathy for,other people.When all I have been able to achieve,using the same stuff,is stopping things like head banging,eloping,and stimming.I don't think it was earlier interventiom,so much as my autism is that much more severe.

The author said...

Stephanie, I don't think you appreciate what a hard time is, nor do any of us.

My dad, possibly autistic himself lived through the Coventry Blitz.

Even so he did not have to deal with starvation and genocide as so many have had to in countries like Bosnia, and Rwanda, Ethiopia, Zimbabwe to name but a few.

My life has not been a bed of roses, but I have had it easy, yes even with the social isolation, the confusion, the bullying, the torture (yes I mean torture literally, it is not half traumatising as I have recently discovered through flashbacks)

Let us all keep a sense of proportion. I try to.