Sunday, November 19, 2006

Melting Pot

Is the U.S. a melting pot? Well its often about assimilating everyone into what makes things conveient for the majority but that often just means that everyone must accept their place. We as a society dont see everyone as just where they are. We instead judge them in terms of what we feel they should be able to do and how close we feel they get to meeting the expectations of those we place in positions of authority.

In evaluating the autism spectrum and its practical applications, that creates at least two catagories that need to be addressed. One is how describing it can help create educational and vocational supports for the diversity of autistics. The other is the social aspects of how such diversity can be accepted better in home and social settings. These two are not independant of each other. One effects the other and vice versa.

If the practical application is going to be better understood, there at least needs to be some acceptance that such differences presented by the different expressions described as autistim, in order to address how to create the acceptance that we are looking for. For me anyway, I dont feel that we can try and fix or cure the expression of autism and at the same time seek for society to adapt. Curing and fixing seems different than seeking acceptance. Mainly because *focusing* too heavily on fixes and cures will not create more societal acceptance. Instead it ultimately demands that the autistic expression be changed. Personal responsibility doesnt really allow for differences.

Instead when the veiw of something about someone being different is too much about something that needs to change, it will ultimately be looked at as personal responsibity. We need to accept that people can and will accept personal responsibility but not as long as societal expectations are too limiting for their differences.

We as a nation and as a world are a melting pot of conformist. We evaluate people based on their performance that is directly related to what the majority has ruled is the accepted method of perfomance and the necessity of the service or product that is produced. True inclusion of the uniqueness of the autistic experiance and the expressions that will often be the result of such unique expressions needs to be better defined to create more practical outlets.

Its not just about societal inclusion or the educational/vocational adaptation that are needed for autistics. Instead it about all that and more. Assimilation has never been accepting of societal responsibility. It has always been about inclusion. It becomes exclusion when those who dont fit fail to meet the expectations.

There is plenty of support to go around. Its never been about the lack of anything that we dont already have. Its about that we are not making what is needed available to everyone because of societal pride that inhibits the imagination that is needed for true inclusion.


At 2:47 PM , Blogger abfh said...

Hi Ed. I was going to respond to what you wrote about the needs of those who never got a label and could have benefited from more services, but I got busy and didn't get back to your blog for a little while.

I hope you didn't delete your post "Nell" because you were worried about offending me. I am not trying to stifle debate or force anyone to agree with my views. I'm in favor of more diversity of views being expressed. Although I don't write as much about services as I do about other topics, that's just because I tend to think more about other topics. I'm not making a value judgment on how much discussion of services there ought to be.

You're probably right that there are many people who are not involved in the neurodiversity movement because they don't feel that their needs are being addressed. This is something that ought to be discussed, and I hope you don't feel that anyone expects you to censor yourself.

Also... I don't think you're fragile at all, and I'm certainly not trying to avoid debate to be nice. When I disagree with someone, I'll usually let them know about it. So far, you haven't said anything that bothered me.

At 7:24 PM , Blogger Ed said...

You read the post called Nell *and* the comment I wrote on the other blog?
My wife keeps telling me not to delete stuff. I guess that will teach me. I keep forgeting that people may be reading what I write.
I really dont like debate. Im just trying to figure out how best to learn and discuss some things that are important to me. Ive always looked at things as, "If you want respect ,show that to others."
This stuff is really important. Im just going to have to figure out how to get more involved in discussions. Thanks for the encouragement.
The reason I deleted the post Nell was because I dont think I understood enough about some things I was reacting to.I really dont read that much. Sometimes the blogs that I learn from are not really ones that I understand how they write stuff so I glace over alot and get some ideas from the comments. Every once in a while Ill comment because something really motivates me to and then I find out what they were *really* talking about.Thats kind of embarasing. Anyway that happened this weekend and after someone anonomysly told me how great what I was commenting on was, then I realized I really didnt get the subject they were refering to at all.Thats what I was thinking about in that comment to you.I should have explained better.
It seems like some are saying that the label autism from the DSM IV is too broad to be practical.I hope there is something practical about the label/diagnosis.Maybe for them it isnt but I am understanding alot about what my strengths and weaknesss are and I really am going to use what I know for good.Id like to think it can help others too.
Also Ill try to find a way to discuss this because Ive thought about it alot. The parallel to Nazi Germany makes sense.Hitler did alot to get rid of people according to what he called race but alot was about what was called disability first. I think there was a pragram called TR 6.Ill look it up.
I also think that there is more to why people are uncomfortable around autistics than can be described by words like normal vs. difference.Id really like to understand that better.
These are good points that I see you are bringing up.At least I think that youre saying this.Im going to try to find ways to discuss this better because its important.

At 8:00 PM , Blogger Ed said...

Also I didnt think you were expecting me to not say what I thought.I dont even see how we even disagree on much of anything. I know you are trying encourage debate. Im just trying to figure out how *I* can do things better.

At 6:02 AM , Blogger Ed said...

Im wondering if some of this relates to what you are trying to discuss.If I knew how to put it all into something besides a comment I would. Actually Id rather put alot of this on your comments because its more familiar to me than some other sites.I know I at least have some idea of what youre trying to dicuss.There some others that I read but havent yet learned how or what to say on them.So, on the off chance that your reading this here goes:
What I meant by normal vs. difference and what makes people uncomfortable is that the differences in some prejudices can be better defined.
A woman may be just as qulified as a man to do a job but the man gets hired because of societal veiws of men being more able to do leadership/dominant roles.Its not true and the fact that many women (because of how they have been treated by socity) and what societal norms have conditioned women to think also plays a role as well. These factors can be applied to race as well.
However, most stereotypes dont present the kinds of difference that say an autistic may present.It may be that they are just different and can do the job and arent being given the cance because they are different.But I think that first new test need to be given to different people such as autistics to more acuratly describe strengths....but even more new markets can be developed that make what are now seen as weaknesss be seen as actual strengths. This may seem too idealistic and seperating people like this may cause problems I havent thought of.Im thinking that I need to understand it better....But do you think these ideas are unreasonable?
What I dont hear being said about the DSM IV is who is being given the test and why.Autism is an exellant diagnosis for me. Im quite sure that it very accuratly describes something about my neurology that I can use in a practical way. Unfortunatly, Im guessing I wasnt given the diagnosis to help me. Being a part of the numbers just furthers the agenda of those trying to describe an epidemic. That doesnt make it any less acurate in my case and I hope it doesnt mean that I have to give up on finding practical ways to use it. Really my other choices are intitution, over medicated, brain injured label,cant read,cant work, victim.How is any of that practical? Been there, done that. Theres no hope in that route.
What are the problems of U.S. medical *and* educational bussinesss? the statistics dont begin to address the problem. I could tell alot of cases that never get factored into the statistics. Most dont report things.There isnt even a place to report them.
Why would DSM IV include impulse control? Who would get the diagnosis? It would be used to blame victims.Do you think that people are are using their social security checks on lottery tictets because thy are unwilling to go to vocational rehab? There would have to be some kind of pracical voc reahab in place in order to make such a claim.
Educational lotteries could be replaced with taxing the rich.Thats not going to happen. They need to continue to say that decreases incentives.Whos incentive?
Meanwhile do you think Donald Trump would support a bill that had everyone tested for impulse control disorder and then required casinos to ban people with the diagnosis? No way!
Anyway ABFH Im thinking of these things as related to issues being discussed on your site.If you think they would be productive, Ill comment there.Either way Ill keep trying to find ways to discuss stuff.

At 7:18 AM , Blogger abfh said...

OK, I'm glad that's cleared up!

I wouldn't have a problem with the autism label being so broad if it had been used for good purposes, as you said. There are many other broad labels, such as hyperactivity, shyness, and anxiety, that allow for better understanding and more help.

The trouble with the autism label is that it has become a wastebasket category, like what happened with the mental retardation label. When people first started using the word "retarded," it just meant slower than average to develop. It didn't mean hopeless or incapable of doing anything. Einstein described himself as retarded because he was slow to speak and to learn some other things as a child.

If someone is labeled as retarded in today's world, we all know what happens -- they are segregated from the rest of society and never get a fair chance. It's becoming the same way with autism, too. When I talk about how much the autism label has been broadened, I'm trying to point out that most autistic people were accepted as contributing members of society until very recently and that there is no valid reason to exclude us.

You are right that more services are needed to integrate the autistic population. Better testing to identify strengths would indeed be a good place to start, as well as career counseling to match strengths to jobs.

Please feel free to comment on my blog; your insights are always welcome.

At 7:45 AM , Blogger Ed said...

This is my 5th comment if someone reads this and sees that they are not all presented Id like to rewrite them. #4 seems to be missing and its important.ABFH wrote #1 and now Ive written 2,3,4,and this is 5. #4 seems to be missing but I can still see it. Id like to write it over if no one else can see it.
Im continuing(this is important).What Hitler did was not just the worst crime in history.To do what he did he had to make his plan seem practical. As hard as he tried he couldnt define the arian race. But dont forget how he tried.( Im going to write more aboout the program that I think was called TR 6.I have to look some of that up.)
He went so far as to say that facial semintry( how the face is structured) told who was arian. As absurd as that was it does describe differences.
The deaf were sent to concentration camps.If parents refused to allow their chilren to go, they were sent there also.
One of the things that they looked at was how high the ears were set on a persons head in order to better determine superiority.
High set ears actually does effect hearing.It changes the ear canal. My mother has ears that are probably higherset than most.Shes had surgury to improve her hearing.She wears hearing aids in both ears and her hearing is getting worse.
Her abity to hear cant just be put into a catagory of deaf vs. hearing.It has to do with tones. Her singing indicates what would give her the label of tone deaf.
So Hitlers selective breeding would have claimed to reduce the number of tone deaf people.His methods were the most dangerous the world has ever seen but Im seeing how Hitlers ideas are not yet extinct.Quite the contrary.
So I think that racial prejudice is amongst the most important but if we want to change things we have to look at not just what people can and cant do . We need to find more ways to validate all human experiance and the exxpressions that will result from diversity.This will ultimately protect what is considered race too but the answer is broader than just looking at that.The human race is what would be gotten rid of by the exclusion and discrimination that is fueled by hatred.

At 3:28 PM , Blogger abfh said...

I can see comment #4.

Here is a link to an online memorial to the victims of Nazi eugenics:

In Memoriam

I wrote a post that discussed it last year, On Death and Disability. As the memorial site says, "not remembering is repeating."

At 7:42 PM , Blogger Ed said...

Autism is the new retarded.I understand all too well.But I couldnt give up even if I wanted to.Im learning alot but knowing how bad it is can only make me more determined.If I accepted defeat I wouldnt have anywhere to retreat to.
"Not remembering is repeating" Thats it.Youve obviously had a grasp of whats going on for along time.
My goals probably seem lofty and impractical but they arent because I havent seen enough. I have. I just have to keep trying. I dont think it will just help me.I really believe It can help others. Some things are just going to have to get better.What Im learning is very valuable. Thanks for showing me the link to your old post.
And oh yeh, Ill bet that "In Memoriam" would be interesting.Some things I can print and get better with a magnifying glass but Id need a microscope for that one!

At 8:30 PM , Blogger Ed said...

And yes I did hear why the broading of the autism spectrum was excluding alot of people for no valid reason and I can see why.Thats a good point. And I did hear you say that better test to match strengths to jobs was a good idea.... which is what Im saying.I heard that.: )It just took me a while to get around to saying that.Id delete the last comment to better reflect my understanding that thats what I heard you said but the last time I deleted something it was a mistake. Im getting better at this. :)

At 5:35 AM , Anonymous Anonymous said...

Hello Ed.
I didn't even realise that you were back, but I'm so glad you are.
You have written so much that makes me think in this and your previous posts. I agree with you when you say
'*focusing* too heavily on fixes and cures will not create more societal acceptance. Instead it ultimately demands that the autistic expression be changed.'

The whole notion of what is normal or acceptable is one I've been reading about and thinking about for a while now. I think my roles as the parent of an autistic child are to do my best in raising him and teaching him, but also to do my bit in changing society to be more acceptable of his differences. For now, all I do is to talk to people, family and friends, about why we need to change some of our pre-concieved ideas of disability and difference. I'm no expert for sure, and I have lots to learn myself.

At 7:11 AM , Blogger Ed said...

Thanks Sharon,
I *back*! Im feeling more hopeful and less stuck.Not because I have more answers. But because I can more clearly define the questions.
I liked what you said about parenting and *both*doing your best in raising him but also doing your bit in changing society to be more acceptable of his differences.
I continue to read on your blog about how you talk to people and I think you are doing a good job of changing some preconcieved notions of disability and differnce. Thats helping me find ways to that.(I mean change preconcieved notions).I prefer your expertise over lots of people who *call* themselves experts.(the so-called autism specialist is who Im refering to)
So much of my life seems to have been stuck between being seen as either *not* smart, "cant learn" or " he sometimes shows areas of intellectual abilty so he must just be lazy" Neither is true or prductive.(cant learn or lazy I mean)
My diagnosis actually describes me as autistic with savant abilities.Im now thinking that *savant * label isnt accurate or practical. Its just another conveinient method of exclusion.
Ive had fun at times when people are being condesending and I rattle off some memorized quote from someone they think is smart or Im somewhat removed from understanding something they are talking about.... so they act like Im like Im not there.... so I say something that makes them question themselves and how theyre seeing me.But it really only serves to promote me as some kind of circus act.
Besides my memory has always been very random in that way. I cant recall any bit of information consistantly, no matter how well Ive learned it.
Im not retarded(in the sense that I cant learn which is the current definition) but Im no genius either.
I am what I am and Im going to find a way to use what Ive got.
There are some beaurocrats that dont like my expressing things this way.They can never seem to find a box to put me in. Well, the first box I fit into is not going to be the one they plant me in! : )
Im going to take some beaurocrats thinking forward along with me across the goal line if I have to pick them up one by one and carry them across my shoulders to do it! (Since Im rather small and some of them are rather large that may present a real challenge.... but hey, whatever it takes! right?)

At 7:52 AM , Blogger Ed said...

And no, nobody is retarded or cant learn. If autism is just a new way of saying that then I want to make the label mean something different, better define the label,add better defitnions that relate how the label can be practical, abolish the label when its too inclusive in ways that do nothing but promote negative stereotypes and all the terrible things that are associated with epidemics etc.
Hey, my wifes going to be here for Thanksgiving! We have so much to be thankful for!
Lets see Ive got grocery shopping to do, a Thanksgiving meal to prepare, house cleaning to do....and oh yeh, Im going to write a blog on the Nazi/disability thing that Ive started.
I hope people have a nice Thanksgiving.
All my favorite Thanksgivings were times when I was helping out in shelter kitchens.I wish I was there today.Thats where Im ging to spend this day again more often in the future.Its important.

At 9:46 AM , Blogger Ed said...

And at the bottom of that link "In Memoriam" there are lots of other good links that will give me lots of resources that I can read.(At least I can get something out of them anyway).Thanks, ABFH.There is alot there. The main one was probably written that way for a reason....just wish there was a larger version of it though.

At 12:50 PM , Anonymous Mum Is Thinking said...

I don't like the 'savant' label either, at least not as it's perceived by most people. It has a demeaning connotation.

Savant seems to mean "This person has skills that aren't worthy of respect, no matter how wonderful they are."

'Savants' are as worthy of respect for their abilities as anyone else who has abilities. Those skills come from within them just like any other skilled person.

At 7:59 PM , Blogger Ed said...

Good point Mum is Thinking,
I might describe that in a different way but our goal is the same.Find more ways to show *respect* for everyone.Socity has trouble finding ways of creating value for some with out taking it from others as though there were a limited supply of respect.Given how I think most people are taught, I think its a challange for everyone.At least we are trying. Not everyone does.
No one has a lack of skills. Its about the value judgement of those skills.One of the ways that savant skills are dismissed is by claiming that they cant be identified. It would be different if they tried, but they dont. I actually can finally identify certain things that I absolutly can and cant do.That should be liberating but its not conveinient for those who are supposed to help people like me.
When a person cant identify supports that they need or they just want to live without the negative stigama that says who they are isnt valuable, thats the ultimate goal.But there isnt even something available when they *can* identify supports.
My point is that in order to help people understand how much of the population isnt respected and valued, they first need to understand that it is a finacial, political, and societal, goal that is seen as a necessary expense to keep people who are CONVEINIENTLY disabled shut up and out of the way.
Here it is:Lets take people on the streets and those who are institutionalized for instance. Ive had to make that choice. Some people still do. By the time I was in a position of really seeking support, it finally dawned on me why I had been so convieniently dismissed and why others are too.Its because most people *think* that the people in these places have choices that they really DONT have.
People need to understand that these people DONT have the opportunities that most people think they have,but it more than that. People are going to great lengths to show that the supports *are* there but people dont utilize them. I wish I could tell how many times more money they spend to prove what isnt as being what is.Its alot more than it would take to just support and respect them.
Granted Im different than lots of people but Im not going across that line if inclusion without making people aware of what I know.Nothing is worth that.I know what Im saying and I can prove....and I will.
I have it in writing from lots of people that say that they cant be held responsible for working with me because Im too different.Who would I help if I said I was different or unique like everyone else.
Inclusionary methods exclude when people fail to fit.
Therefore not acknowleging that the methods are *called* inclusionary are not that at all, ultimately wont help anybody.Too many people have been fooled into walking through that door only to find that it is a revolving door that doesnt help anybody(not even them).You know, they are taught that if they show that they can do it, it will encourage others to believe in themselves. Well, that doesnt work.It targets the wrong group of people to change.Thats not where the problem is.I dont even know if I could get through any of those doors anymore.It doesnt really matter.At this point the system is going to have to change to include me.And people have to know what limits us all, not just me.
Is what Im saying making sense?

Of course your point is both logical and empathetic. Diagnosticians have trouble with that.They seem to not be able to see how a person can be both a systemizer(logical) and empathetic.

At 8:55 PM , Blogger Ed said...

See, thats why I delete stuff. The last part of the previous comment was part of something I was going to comment on and decided to write something else. A.M. with coffee is better than P.M. and meds for writing stuff.

At 7:57 AM , Blogger Ed said...

The ones who get help in this world arent the ones who need it most. Nor are they the ones who talk the most about needing help. Quite the contarary.And most dont have any idea at all whats going on. The people who are ignored when it comes to help the ones that are the most conveinient to ignore. The thing is that most people dont understand that their beliefs have more to do what people pay lots of money to encourage them to think and that what is spent for this purpose is alot more than I what it would actually cost to help people.Again there is no lack of money!
You said in your first comment on here that you hoped that I didnt feel that anyone expected me to censor myself.I dont think you do, but unfortunatly I think most people do.Its not just any group of bloggers or autism advocates. Its alot more than that.
My veiws on this subject are unpopular.While I can appreciate your encouragment, none of us can ignore that people with unpopular beliefs *are* indeed expected to stay quiet about them.People with unpopular beliefs are kept quiet in more ways than other people would like to admit.
As much as I would like to get around it, I havent been completly honest about my feelings about debate. I HATE debate.
I grew up listening to so much debate about God and the nature of God that I eventually realized that debate is an competitive intellectual arena that that can ultimately create a belief system whereby those who can best express their point are somehow more enlightened and therefore more deserving.
I have found that this is hardly limited to religion and politics.
I that believe that the issues concerning autism should be decided(and I guess that means debated) amongst those who are effected by it instead of leaving it to polititions and other leaders.
However,the majority of people will not be served if the competitive debating arena is governed by those who can express themselves best or the one can most effectively allign themselves with the most popular veiw.I think that this is something that especially needs to be remembered when it comes to looking at the best ways to show respect and support for a population of people who communicate in diverse ways.Encouraging diversity amongst people who communicate differently?I think that the best way to do that needs to be better explored.
I hate being stuck. Did I mention that?
Its just like anything else.Why would I want to become the best debater I can be if all that means is that I can show that I am more enlightened and therefore more deserving.That notion would be the very thing I would want to be debating against! So, at the moment Im having trouble seeing what the point is.


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