Archive for the ‘all of us’ Category

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From Guilt to Acceptance of a Smaller Role in Autistic Advocacy

February 21, 2013

So we have been dealing with many guilty and unhappy feelings lately. Let me be clear first: NO OTHER AUTISTIC SELF ADVOCATES ARE IN ANY WAY RESPONSIBLE FOR OUR FEELINGS. We haven’t, fortunately, read any posts by any advocates we know, that suggest that autistic people who aren’t involved heavily in self advocacy are bad people or not serious about wanting better representation in society. We haven’t been more involved in advocacy for several reasons. We are currently in school pursuing a bachelor of arts degree in mathematics. We have had many difficulties in school which are mostly unrelated to subject matter. Though this semester, we have had trouble with some of that as well.

These guilty feelings are doing absolutely NOTHING to help us. Well duh. They are directly NEGATIVELY affecting our concentration. They pervade our waking thoughts (not all the time, but even a few times is too many!). They are unwanted intruders.

We feel guilty about having arrived late on the scene of autistic self advocacy. This is true mainly because prior to our diagnosis, we had no contacts with self advocates, nor any occasions to learn about the movement. Had we known, we probably would have tried to get involved sooner.

Again, we must reiterate our prior assertion that NONE OF OUR GUILT SHOULD BE BLAMED ON ANY OTHER AUTISTIC SELF ADVOCATE! Our current life circumstances (primarily being in college) mean we don’t have as much time or energy to dedicate to advocacy. We just have to embrace a less visible, but no less important and significant and MEANINGFUL role in the process.
There will ALWAYS be a need for advocacy in the autistic community.
Our advice to anyone feeling a similar sense of guilt,

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Being responsible versus being given a responsibility (or several)

February 18, 2013

What is the difference between being responsible and having responsibilities? To give someone a responsibility does not necessarily mean that the person is now responsible. The word “response” which means “a reaction or reply” to something, is the word I think of when the words responsibility or responsible come to mind. Actually, a friend mentioned this thought to me at a dinner outing last night…we were sitting at Noodles and Company, close to where I live, and we were talking about that briefly over a scrumptious (boy I love that word!) meal of spicy Indonesian peanut saute noodles. A person may have the responsibility of raising a child, but that alone does not a responsible person make. There are countless stories in news, past and present, of young people and celebrities having children without regard to the kinds of RESPONSIBILITIES they would have to face, and when they do not face them properly, they are not RESPONSIBLE.

A responsibility is an obligation bestowed on someone, and “being responsible” is a character trait usually acquired over a certain period of time. The length of time depends of course on environmental factors such as life experience, age, education level (sometimes, not always) and other things. We may explore some of these other things in future posts. People with disabilities can certainly be responsible. That discussion deserves its own post.

Being responsible is learned behavior. NT people learn it by observation and imitating peers. So too can autistic people, but it can take much longer. First do we understand what a responsibility is? Autistic advocates definitely have responsibilities that they take on themselves. Some of us organize protests against Autism Speaks events. Others organize major events such as the ASAN annual gala. Need link to this. Include more examples)
Others give presentations at Autreat, the annual retreat by and for autistic people.

The advocates who participate in these activities have chosen to take on these responsibilities. They are not forced or coerced by others to do these activities. These are real responsibilities though, just like going to work if one has a job, going to school (in my case) or taking care of one’s children. And some autistic people have children too, but that isn’t all that relevant except it is another responsibility that some of us have.

We will have other blog posts upcoming about things related to this: specifically we have plans for a post about the damage parents/family can do to autistic people by calling them “irresponsible” for not doing certain things. If you have something to say about that, or this post, we would love to hear from you!

Collaborative, all of us (finished by Athena)

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Some suggestions for bloggers

February 15, 2013

This post will deal with organization of ideas and maximizing readership by spacing out entries.

Do you sometimes find yourselves able to write several posts at once, and then have periods where ideas float around but nothing concrete comes out, or you can’t put into coherent language what you are thinking? We certainly do. We have come up with a working solution to that, which may be of some help to others. WordPress has a feature which you can use to delay publishing. You can schedule a different day for your posts to be published. The benefits to this will be continued readership when you can’t get ideas into writing immediately. If you publish several posts in one day or even over two or three days, chances are that readers will miss a few of them because the human attention span limits what we can read for comprehension and process and respond to. Spacing out publication increases the number of people who will read your posts, can increase followers, and also “buys you time” to craft more posts from your ideas. Go to the publish icon and just select a day in the future to publish a post, click on update, and the word “publish” will change to “scheduled”. Save the changes and your post will automatically be published on the day you have selected beforehand. Thus your blog won’t have to be “quiet” during the periods in which you are experiencing writers’ block.

Another suggestion: make a draft with a list of your ideas. Write incomplete thoughts and number them. This is good if you start writing but cannot finish a post. When whatever you are working on has more than a paragraph or two of material, cut and paste it into its own separate draft, so that your ideas list isn’t insanely cluttered with words from many different unfinished, undeveloped posts. This has helped us immensely. You don’t need to do this for every unfinished post; if you already have a title in mind and a decent amount of writing ready to come out, just start a separate draft.

One caveat: you may find that you need to renumber the ideas if you are like us and want things to stay in sequential order. We are picky about putting new ideas down the list in order. If you aren’t worried about that, you can take a shortcut and just keep listing ideas as you come up with them, not being concerned with numbering.

Sometimes looking at the search terms people have used to get to your blog, can be a great way to come up with new ideas! Maybe you haven’t written anything specifically about squirrels for example, but you notice that one of the search term expressions has to do with squirrels.
You can then write something, anything, related to squirrels. Maybe you remember a particularly fat squirrel you saw at school a few years ago. Interesting thing to write about if your blog is more “casual” (not for a professional job) or a personal blog.

I may have a follow up to this post….about more blogging ideas.

Collaborative
Athena, Ivan, and Andrea

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Reblogged from A Strongheart Moment

December 29, 2012

Please donate to the Leeshore Center. And reblog the original post to spread the word. Thanks!

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Brief Update from all of us

December 27, 2012

Sorry we haven’t posted anything new after a stretch of fairly regular posting. It is not for lack of desire or lack of anything to say. During the end of semester craziness we were unable to finish a bunch of drafts and schedule them a few days apart to avoid the long lapse. We tried for a while but we could only cover a few weeks. After we came home, naturally (for us) it was family time. We aren’t sure when we will be able to start posting on a semi-regular basis again.

Take care and thanks for visiting/following our blog.

Andrea for all of us

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Feeling Intruded Upon

December 19, 2012

Why the hell do people always think that even when I seem to be sitting around doing nothing, I might be far away in my mind-fortress and not want to interact(even to respond to a request to do something) or be disturbed? The following is just one example one of us came up with(possibly Athena; she likes watching insects. That says NOTHING whatsoever about her “functioning level”, by the way. So “I” refers to Athena. She wrote this draft many months ago, like most of our recently published entries) While I was observing some insects going about their business, my mother asked me to hang up the laundry. Okay, forgiven. She doesn’t know that I drift away somewhere else, because I have never really told her, so she has no way to know. I have intentionally not told her or anyone else in my family. (Not the full truth; I can’t figure out how to tell them in a way that wouldn’t result in awkward questioning.) So this is more of an internal dilemma and rhetorical question than anything else. When I did not respond to her request/demand, she “invaded” my fortress a second time, and penetrated more deeply with her speech and body language. Feeling cornered, I responded (I can’t remember what exactly I said, besides “yes” or “okay mom”) to make her retreat, because I didn’t want to continue the interaction at the time. I just wanted to be content sitting on the steps, watching the insects. Alas, Mom would have me do something else.

In another post we will try to explain the benefits to us, of being able to “go away” into our mind. It can be calming and rejuvenating. But there is also a downside, such as when our thoughts get into a negative, repeating loop. It happens more to Ivan than myself or Athena. We aren’t sure why. That issue is probably worth a post on its own.

Collaborative, Andrea and Athena.

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Reblogged: Shopping Expedition gone Awry

December 16, 2012

Wow. There are so many things wrong in this situation. Talk about deflating! This kind of thing is what many of us autistics experience in daily life. We need to figure out how to educate staff in grocery stores and retail in general, on proper etiquette when interacting with disabled customers who happen to bring friends/support people.

I would love to read suggestions from other self advocates, on how we can educate customer service employees to interact appropriately with autistic people and others with disabilities that might cause them to “appear” less intelligent, for lack of a better expression. Especially those like E who went with a friend, and had the employee talk to her friend rather than directly to her.

My wording is poor, but this has to go out. We have been sitting on this post for a very long time now.

Andrea

The Third Glance

While I know this is really minor compared to some things people go through on a regular basis, and my visible disability is temporary, I just wanted to share a story that happened to me yesterday. Not for reactions, just to point out that things like this happen. All the time.

I’m still on crutches, and as such, need to go with someone to the grocery store. My friend and I have a deal that involves a weekly trip, and we’ve been shopping together for more than a year. I keep him on task (he spaces out a lot, plus, I know where everything in the stores we go to is, and can quote prices, too), and he deals with people for me. It’s a good trade. So anyway, we were on our way out of a store last night, and were about 20 steps away from the register and…

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