Archive for the ‘life’ 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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when we were younger

December 13, 2012

*TRIGGER WARNING FOR BRIEF MENTION OF PHYSICAL VIOLENCE NEAR THE END OF THE POST*

I got the idea to write this from reading a label on a Lean Cuisine entree………”cocine en alto” which is Spanish for “cook on high”. When we were younger, we used to think that “alto” was a language, because we heard a friend of our housekeeper talking about it……..didn’t realize it meant the vocal part she sang in the church choir. I knew she was from a different country so I thought that her language was called Alto.

We had another post about something very similar. It was about Peter Pan and his pixie cohort Tinkerbell. She was dying because she drank Peter’s medicine that Captain Hook had poisoned. Peter asked people to clap so she would get better. Our out-of-body sister Natalie (Not her real name) and I were sitting on the couch watching, and we clapped because we thought Peter was talking to us. Can’t recall ages now. This was definitely more than fifteen years ago.

We (myself Athena and Andrea; though at the time we didn’t know about plurals and DID or even autism) also had other things we liked to do alone. Weather intrigued us quite a lot, so we would go to our room, close the door and then take out our beads and pretend the floor was a weather map. We put clusters of beads on the ground to denote storms. We made bigger and more circular or spirally clusters to denote hurricanes. We called it weather for The Littles. We don’t mean littles as in “insider children”. We meant small people. Very small people. Like toothpick sized. And invisible too.
We didn’t want anyone else to see what we were doing. This was a long time ago, so I don’t know why. Perhaps it was embarrassment? Not sure. We would often close our door in poor Natalie’s face. Well, not literally but I’m sure it felt like that to her. We wanted that alone time. To enter the world of the Littles and tell them what kind of weather to expect for the day.

It was a ritual that happened almost every day, probably around the same time. We cannot remember now, how long it lasted.

When we closed the door on Natalie, she often cried. That made us more annoyed because of sensory aversion to crying. We probably couldn’t understand why she was crying. It didn’t occur to us that she could be upset about not getting attention from Big Sis.

So, she would retaliate, by closing the door on us. I had no clue the events were related. It didn’t make any sense whatsoever at first. And also, there was a sense of “she is doing it to be mean, but I wasn’t.” We certainly felt that she was bullying us, and didn’t think that she might have felt the same way.

I would get upset at her and hit her or sit on her. I didn’t know how else to behave. I was less than ten at the time. We weren’t diagnosed as autistic until much later (we were almost 22).

We are pleased to report that today our relationship with Natalie is very deep and loving. We lift each other up. She doesn’t have as much time to talk to us as she would like, because of work and her own social life. We are also busy with school, especially at this time (end of semester, preparing for final exams, etc.)

This is one of a few posts we plan to write about our childhood.

Andrea and Athena, collaborative

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This time of semester SUCKS

December 4, 2012

Lately I have been feeling very overwhelmed with shit and often I end up feeling numb. Like I don’t care about school anymore. But that is simply not true. I do care. We do care. The grinding overload, plus the seasonal depression, makes concentration very difficult to say the least. I have spent much more time than usual reading blogs, and writing my own stuff. That isn’t going to help us learn Differential Equations or Abstract Algebra. It isn’t going to get our homework done, or help us study for exams. It may even be contributing somewhat to our depression, because we read about what other advocates are doing and we feel bad about not being more involved.

The middle of November is the start of the big push until final exams. Thankfully this semester we don’t have any writing classes. I think the less than ideal way we handle the pressure is THE reason why we cannot realistically be full-time in school. We simply cannot handle all the coursework of a full load plus all the other non-academic crap (keeping apartment habitable, grocery shopping, getting gas when we need to, etcetera. We will talk in more detail about these aspects of daily life in a different post.

Before the semester began, all of us were ITCHING to go back to school, because our summer break was TERMINALLY BORING. I can’t remember much about it at all. Other than wanting so badly to be back in school and advancing our study of mathematics.

Abstract algebra is fascinating but can be a pain in the behind. Differential equations- nom nom nom. But we haven’t been keeping up with homework for that class because the other class consumes so much attention span and time. Since we are autistic, we have alot of trouble keeping up with anything that isn’t college related also, in addition to falling behind on coursework sometimes. Most of our neurotypical classmates hate this time of semester also, since many of them have a full course load and may also be working. Bucketloads of stress for all!

As I have said before we all love being in college. And this semester we have been more social with our classmates (partly out of necessity- several brains are better than one when it comes to Abstract Algebra homework, and we cannot co-front to do our homework. It just doesn’t work.)

But right now, we just want it to be over already. This part of the semester really really sucks.

When it is finally over, we will probably be extremely relieved for a week or two, and then start itching for the next round.

Ivan

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I love my family. But…

November 13, 2012

I love my family BUT….they can be too critical. They can be very impatient. They don’t respect the boundaries of the fortress (well that’s because they don’t know it exists in the first place. It is that way for a reason. More than one reason in fact.) I don’t think they’d respect those boundaries even if they were aware of them, and actually it would be even worse for my privacy if they did know about them. Our mother has a tendency to make assumptions about our abilities based on inadequate information (we can’t or won’t explain fully what’s going on.) For example when I say to her “gee, this math is really hard,” she might say something like “well, you know, nobody is FORCING you to do it, you can do something else!”

This drives us nuts! And what drives us even MORE nuts (and makes us anxious and unable to fully disclose or even halfway disclose all of our struggles) is that when we DO open up about certain difficulties we have, for example going to sleep at a decent time, which we do understand is important, mom says something like “well then maybe you shouldn’t be worrying about college right now.”

That drives us absolutely bonkers.

Here’s another thing that drives us nuts. When we were living at home, and not in school, Mom wanted us out of bed by 8:30 in the morning when we had no reason to be up at that time. She expected us to do this without fail. Then she would give us chores to do. Which wasn’t a problem really as we were living there rent-free. The idea of waking up at a certain time every day in the morning is actually an idea that we can embrace! But the manner in which she finger-wagged and something in her tone made us instantly averse to it.

In fact this has been a common occurrence with our family and our mom in particular. She is often correct in her assertion that we should do things this way or that way, and her advice is not wrong. But the HUGE PROBLEM is with the MANNER IN WHICH she gives said advice. We aren’t sure how much our averseness to it has to do with our particular neurology and how much of it has to do with the parent versus adult child dynamic. Things like tone and body posture and yelling really get in our way of being able to listen to and make proper judgments on the merits of her suggestions. Another major issue is that we cannot articulate in the moment, why we cannot or will not follow her advice, because of all the vibes getting in the way and feeling put under a microscope. It’s very difficult to come up with a concrete example of what we’re talking about here, but if we do manage to come up with one we will write it up in a separate post and link to it.

All that said, we do love our family.

Ivan

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Disabled Girl Jailed in Pakistan

November 4, 2012

Whoa. This is ridiculous and outrageous! As advocates, what can we do, if anything, to help this girl and her family?

At the very least people should write to their elected officials and ask them to speak out about it. We must make our voices heard around the world!

Ivan

cyprusdisabilityforum

Pakistan police have decided to decline requests for bail for the eleven year old Christian girl who is accused of blasphemy on the grounds that releasing her would endanger her life and her family. The young girl is held in a state of shock and has not been able to say much to the police.

Christian human rights groups of Pakistan society are enraged and demand that the girl, who reportedly has Down’s syndrome, is released.

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On the other hand, Muslim groups in Pakistan are now insisting she is burned alive for supposedly burning a Koran.

As a result of the controversy surrounding the case, Pakistan law is under scrutiny for imposing inhumane sentences on Christian citizens. Many Christian families who lived in the same neighbourhood as the young girl have also reportedly fled their homes in fear.

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From Kittymama-Spread the word to End the Word(s)

November 2, 2012

More on the issue of using words to hurt people, this time from a slightly different cultural perspective. It says pretty much the same thing. Definitely a good read and well worth sharing!

Thanks to my headmate-sister for finding this. However, autistics are not all unable to lie. They can fall victim to corruption too. Maybe not to the extent of elected officials (but could that also be partly because few if any elected officials are known to be autistic?) yes we are capable of BEING corrupted! It happens all the damn time! But not in the conventional sense. Whenever we are told we can’t do this or that because of our disabilities, we are being corrupted, if we end up BELIEVING those lies. That will be the subject of another post, eventually.

Sorry to Athena for hijacking her reblog. She asked me to finish it for her.

Athena and Ivan

Okasaneko Chronicles

In 2009, at the height of the campaign for the Philippine Presidential Elections, the word that critics used to disparage then-senator-turned-presidential aspirant Benigno Aquino III was “autistic.” You see, Filipinos don’t like using the R word as much as the A word. Call it a cultural difference, but here in the Pearl of the Orient Sea, we like to insult people with the A word.

As a result, I wrote “To Senator Noynoy (An Open Letter to Senator Noynoy Aquino from a Mother of an Autistic Child)” in 2009. This was my answer to the people who liked to abuse the word “autistic’ and I quote:

If being autistic means not being able to lie, then by all means, I should be proud to say I am autistic.

If being autistic means not being able to cheat and rig elections, then call me autistic.

It being autistic means not…

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