Friday, December 08, 2006


I wish I could express how much I wish I could prevent writing this. I have often written about how much I hate debate. I dont think that conflict is something that anyone really enjoys but people often feel that one conflict is worth chosing over another.

Its not that I havent seen enough. Maybe Ive seen too much. To be honest, Im starting to realize that not only is what Im seeing very relavant but also the reason that its relavent is because some things are worse than I thought....I am not free to write about things that I must.

My choice would be to post encouraging messages everyday. Someone once suggested that my writing was cathartic. As best as I understand that word it doesnt describe why or how I write.

Describing things with a sense of humor or writing about encouraging thoughts is liberating but its not like Im writing to dig into my innermost thoughts in order to find better ways of expressing who Im am and creating a more self aware me. Instead its more like when I write in happy and fun ways, I get to go there along with my words.

I renewed my blog recently in hopes that I could stay away from some of the subjects that I previously wrote about. Maybe I will be able to avoid some of the wrong ways that I approached those subjects but they dont go away. To not risk making mistakes online seems to mean that I would have to stop blogging. I dont know where the balance is.

Im sure that there are situations where there are supports for autistics that are just ineffective and costly. Some treatments are brutal and cause bad health problems. I know that there are societal veiws of autistics that are as bad as what is ultimatly leading to murder. Even worse such actions are being justified.

What I have seen is being descibed by others in different ways every day that reminds me how relevant what Ive seen is. I cant really tell how wide spread it is but Im seeing that is very widespread.

This post is not a personal request. It also may not be very encouraging. However, whats the point in continuing, if I never tell anything. I understand that what Im saying here is a very generalized statement. If you are someone who fights for the rights of autistics, you are not just in the minority.

For what I am facing (and many others also) it seems more practical to say that such practical advocacy does not exist. Its hard to get people to help fix a problem that they think isnt real. Will the belief continue to be that this is a minority veiw of things? There are many that feel helpless and wont be speaking about it.

Some are afraid that as bad as things are, there is a very real threat that speaking up or even attempting to do so will only make things worse. The threats have been made very real. They have a good reason for feeling this way. The only way for things to change is for people to get involved that at least have less to lose. I guess its pretty hard for people to realize that the silence they keep doesnt preserve anything but their job. However, thats pretty much all it does do. In the long run it doesnt even do that.

My experiance has been that the idea that people have that there is such practical advocacy for autistics, is why people are dismissed when they say they need it. What I have seen is that agencies that are claimimg to advocate for this population are bogus. In other words, they have an agenda that is to provide appearances to prevent people from seeking other help. Some of this is justified by claimimg that regulation would prevent services that these agencies are providing to others. What they are over looking is too bad to be justified in any way.

Too many people are being hurt. I get very upset by hearing anyone saying something like get a lawyer or seek out an advocate as if such support actually existed. Basically what Im saying is that it does not exist. Anyone who wants to really advocate for autistics knows that to reveal too much or even look into matters where they know that the situation is very bad would mean that to do so would be to risk their position. Therefore they justify that if they risk their position they would not be able to help anyone....Sounds sweet but it stinks. They are no longer helping anyone anyway.

Maybe some advocates (no, Im not talking about autistic self-advocates) start out with ideals but when they see all the complications of being effective as they had hoped.... there are many complicated factors....Someone has to speak up about this matter. I really dont know how.

Im not thinking that Im going to post some blog and people who werent aware are going to suddenly become aware. It was really alot more comfortable when I had no idea if anyone was reading my blog or who the people were that was reading it. Actually, now Im thinking that the people who are reading this already know alot of what Im talking about. The last thing I want to become is some kind of crusader. I cant hadle what Im dealing with now. Why would I want to take that on? I wouldnt and I dont.

I dont want to go on somebody elses page and write alot about this. I dont want to make people nervous that Im going to start something on their page. Im really starting to realize that alot of people are like me and dont know what to do.

I want to spread the message of hope. I want to go somewhere else online and find people talking about solutions that we can all use. Hows this?Its optimistic (not pessimistic) to identify problems because until they are identified and accepted as being problems, they cant be discussed and no solutions can begin.

Writing a post like this doesnt come with any kind of agenda. Im real nervous and upset about doing it. I just dont know what else to do. The situation stinks and people just cant give up. Maybe it doesnt sound like it but this *is* hope. At least its the best way I know how to express it.


At 8:43 AM , Anonymous Anonymous said...

Just keep doing what you're doing, people are listening. Although there may not be many definitive answers yet, they will come.
Best wishes

At 7:03 AM , Anonymous Mum Is Thinking said...

I haven't been very active lately, probably for some of the reasons you've listed. Sometimes I'm so upset or angry about the situations we're dealing with or I read about that I'm afraid to say anything at all, because I need to think things through before I shoot my mouth off, especially on someone else's page.

Funny thing is, I really don't care if someone shoots their mouth off on MY blog :-) As long as they're not someone hateful or mean (you probably know who I mean) I don't mind opinions...I'd rather someone disagree with me out loud than pretend they agree, if you know what I mean.

I doubt many of us are ever really going to give up...just sometimes we need time to think things through, or we're worried about things or just busy. Speaking of busy, I haven't even had time to set up our Christmas tree, that's bad :-O

I like your coffee cup btw :)

At 8:34 AM , Blogger abfh said...

Ed wrote:

I get very upset by hearing anyone saying something like get a lawyer or seek out an advocate as if such support actually existed. Basically what Im saying is that it does not exist.

Not necessarily. Yes, agencies and caseworkers often are useless, but there are private lawyers who are willing to represent autistics in discrimination cases on a contingency fee basis (which means you don't have to pay unless they recover some money for you). Anne Bevington, who sometimes comments on my blog, is a lawyer who has represented autistic clients. There are others.

When civil rights legislation was new, there were many areas of the United States where no lawyers would represent a black client. Civil rights groups had to bring in lawyers from other areas to file discrimination cases. But they didn't give up -- they just kept on struggling for justice.

At 6:28 PM , Blogger Ed said...

I couldnt give up if I wanted to. Civil rights issues....The good ole boy network is still very much in power and the coruption goes all the way to the top.
I remember an Anne who said she was a laywer that commented on my blog some time ago. I dont know if she is the same one you are refering to.I appreciate that she is fighting the good fight. Thats not what I meant.I should have been more careful in how I said it.
There are some things Ive seen as representations of support that arent real at all.
I will continue to find better ways to say what I need to. I have a responsibility that I take very seriously.I think people need to be able to stop things witout lawyers.
Most of my life I wouldnt have been able to get one.Getting married changed my life in VERY drastic ways.
I get alot of help with what I do online and its too much to ask for those closest to me to support me to become a debater. Especially since I hate debating so much anyway.
I will continue to try to be respectful of what you and others are doing but if blogging is all about debating, alot of valuable expressions of alot of people will not be heard online.
If I ever again had to choose between being homeless and being in an institution, Id choose homeless.Today Id know where to go and Im pretty sure I could stay clean (hygene I mean)enough to go into a library and go online everyday.
Alot of that population would never approach a lawyer about anything. They would not debate alot of things online or anywhere else and I dont blame them.Having opinions can be very expensive.
Opinions should be like houses. Everybody should get one before anybody gets two.
Until everyone has a right to their opinion mine will remain a luxury and I dont take that luxury lightly at all.
Thanks for your continued support and I will continue to try to find better ways to do things online.


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