Archive for the ‘young adults with disabilities’ 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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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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Ann Coulter Discussion Continues

November 24, 2012

We are very glad that people are still thinking about Ann Coulter’s use of the r-word. Just yesterday I saw that someone had found our blog using the following search phrase: “autistic girl’s letter to Ann Coulter”
We do not know of such a letter, just the one we found and reblogged, written by a young man with Down Syndrome.
Talk is good, as it induces thinking. Now it is time for action.

When we have more time and energy, possibly over either Thanksgiving or (more likely) Winter Break, we will attempt to create a list of bookstores which sell her books, with contact information so that people can call and voice their concerns. We would love some help with that if anyone is up to the task; then it can get done much faster and we can get on with making calls or writing/emailing those bookstores! Seriously, we need to do this. Hitting Ann Coulter where it hurts the most, in her wallet, is the best way to send her and everyone else a message loud and clear: that hurtful and offensive comments do not and will not go unnoticed and unchallenged any longer.

Solidarity, fellow advocates and allies!

Let’s do this!!!!!!

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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WHAT THE ACTUAL HELL??? Or, Fuck you, OryCon!

November 6, 2012

Wow. So apparently Orycon, a sci-fi convention in Oregon that had scheduled an autism panel WITHOUT AUTISTIC REPRESENTATION, said, after being called out for not having autistic representation, that they would cancel the panel discussion.
The advocate doing the calling-out even explained what the problems were with the panel.

What she got for all her efforts and energy and VALUABLE SPOONS was a fake apology.

Yeah. She spends alot of time and energy and that’s what she got. I don’t really understand the entire situation to be honest, but I know enough to be absolutely outraged.

BUT WAIT, IT GETS BETTER! I couldn’t make this shit up if I tried.

THEY HAD THE FREAKIN PANEL DISCUSSION!

Because of YOU, OryCon organizers, certain advocates will probably need days to recover from their frustration and overload and wasted efforts to explain to you what was wrong and how you could correct the situation.

I don’t believe this shit. OMFG, I’m so freaking angry right now.

But I highly doubt this is the first time something like this has happened in the history of autistic self advocacy.

K, and whoever else made such an effort to reach out to these goons on behalf of autistic self advocates everywhere, I am deeply deeply sorry, that your valuable energy was so shamelessly disrespected.

These people clearly had no appreciation whatsoever of the time, energy and stress you may have gone through in order to advocate for yourselves and the rest of us. But I surely do appreciate it. I would never have known about this if K and others hadn’t blogged about it in the first place.

And yes, I used the word goons to describe the organizers of OryCon. Why? Because they fucking lied about having cancelled the discussion panel. Bullshit they weren’t aware of it happening. Read K’s posts I linked to. All of them.

I hope this gets signal boosted into the stratosphere!

Nothing about us, without us!

Ivan, Andrea, and Athena

 

 

 

 

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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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