Tag Archives: stigma

Ignorance

There’s a phrase that I think really needs to get used more often. As it is, I hardly ever hear or see it, and I think that’s because it tends to be demonized and/or generally held in contempt. People tend to avoid saying, or even implying, it, because of the backlash that might occur if they do.

That phrase being, “I don’t know.”

Admitting ignorance seems to be a terrible thing in my culture. I’m not really sure why, but it’s definitely a thing. I’ve seen people talk about how they didn’t know something in a circumstance, and how they were SO AFRAID that someone would discover their ignorance so they tried really hard to act like they knew things even though they didn’t. While part of me looks at this in utter bafflement, another part of me sees how others will sometimes react when someone admits ignorance about a certain thing. It’s not very nice.

Specifically, I see a lot of judgement. If you don’t know a thing that they know, something must be wrong with you personally. It becomes some kind of personal failure on your part, of which you are supposed to feel ashamed. People will get condescending, arrogant, mean, all sorts of unpleasant things in response to a simple “I don’t know.” Not everyone, it doesn’t happen every single time, but it’s common enough for people to get nervous about admitting ignorance.

Now, I do think that people need to make a good-faith effort to mend their own ignorance. If you find that you don’t know something, look it up! Find information, put in some work to learn things. While I think it is important to be able to admit ignorance, we also need to be careful to not condone people derailing discussions and demanding to be hand-held through the basics (see: discussions on feminism or racism and how often they get hijacked by men or white people demanding explanations for every basic thing they could have learned elsewhere).

Still, there are plenty and LOTS of situations in which I think it should be ok to admit not knowing something, that people still seriously avoid. For instance, women don’t like to admit they don’t know what’s going on with their car engine at a shop, because the guys working there can be jerks about it. This is a problem.

When Nee and I occasionally need to hire contractors, one of the ways I vet them is by asking a question about something I don’t understand. The one who treats me like there’s something wrong with me is out, the one who answers respectfully, happy to help me understand something outside my realm of experience, is probably in.

 

Actually, I’ve sorta started checking people in general this way. There are a number of things I do to suss out things about a person I find important, that I’m kind of hesitant to talk about because I’m afraid of being accused of “game playing” or something. Anyway, one of them is this. I admit ignorance. I say, “hey, what does [word] mean?” (or whatever) The person who explains it with the assumption that I am an intelligent person who just never came across that before is good. The person who mocks me or talks down to me or is generally an ass about it doesn’t hear from me again.

Ultimately, I just think this needs to be ok. We need to create a culture in which it is ok to not know a thing. Yeah, we should be respectful about our own ignorance and not try to make everyone cater to us, but it should be ok to say “I don’t know” in response to a question, or to briefly ask about a thing if it isn’t particularly disruptive to do so.

Which means we also need to stop being jerks to people who say they don’t know something. I mean, everyone should stop being jerks, full stop. But right now this is my rant. Sometimes I don’t know things. That doesn’t make me bad.

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Shame

creative commons image by marcandrelariviere on flickr

This can be about what it feels like.

I want to talk a bit about shame and how I deal with shame. I grew up with really quite a bit of shame, and it became a rather pervasive part of my life. I felt ashamed of being so different, ashamed of struggling with things other people found easy, ashamed of my shyness, of my awkwardness, of all sorts of things.

Of course, I imagine most everyone grows up with shame. So much of our culture seems to be based on convincing people to be ashamed of something, so we feel shame if we are the wrong size or the wrong shape or the wrong gender or are attracted to the wrong gender or any number of things. Even though none of those things are actually wrong, we are bombarded on all sides with the message that they are. It’s more or less impossible to get away from, and there is plenty of shame to go around for everyone.

For a long time my primary method to deal with shame was to try to “fix” whatever I was ashamed of. I mean, if I feel shame it much be wrong, yes? If I am ashamed of being shy, then I should just stop being shy! Ashamed of being an introvert? Turn into an extrovert! Ashamed of feeling insecure sometimes? Stop feeling insecure!

Of course, not everything that I feel ashamed about can be so easily fixed. I don’t really like being socially awkward, but I can’t just get up some morning and decide I’m not going to be awkward anymore. So instead, I decided to try to hide those things. To just not show my awkwardness, or when I’m feeling insecure, or even that sometimes I have sadfeels.

Unfortunately, I have found that this tactic does not work on two levels. One is that I just can’t always hide things. Sometimes, despite my very best efforts, my insecurity will show. Or my sadfeels. And my awkwardness, well that just shows no matter what. So by trying to always keep my shameful things hidden, I was basically setting myself up for failure.

The other problem is that trying to hide just reinforced my feelings of shame. It’s already not very fun to deal with things like insecurity and sadfeels; piling a bunch of shame on top of them just makes it worse. I bought into that shame, always and entirely. And the shame I felt whenever I failed to properly keep everything hidden and tucked away… well, that was awful.

A few years ago I decided that I was well and truly tired of feeling so much shame so very often. Since the old techniques to deal with the things I was ashamed of were failing rather spectacularly, it was clearly time to try something new.

My something new, that I have been practicing for maybe a couple of years now, is to attack the shamefeelings directly. So instead of trying to stop feeling insecure or trying hide my insecurity, I am trying to not be ashamed of the fact that sometimes I am insecure. Instead, I am trying to own it, the same way I am working to own my good qualities.

For instance, sometimes I get really insecure. That is no fun at all and feels icky. Nonetheless, I am not going to hide it, or apologize for it, or act like it’s wrong that I feel that way. Quite frankly, dealing with the insecurity directly is quite enough for me. I don’t want to deal with all that other stuff too. So instead I have been practicing simply admitting it honestly when it happens, asking for reassurance if I need it, accepting that reassurance at face value, and moving on.

What is still surprising me is just how well this has been working for me. It might still be too soon to tell for sure, but so far there has been significant progress in shedding my shame and leaving it in the past. It is slow going sometimes, and I still sometimes run into the Wall of Shame and need to deal with that, but little by little I am owning myself. ALL of myself. It isn’t easy, by any means. Shame seems to have a way of digging itself into me and grabbing on with hooks. However, it does seem to be possible to shed it, even if just a little bit at a time.

The side effect that I was really not expect but is super nice, though, is the impact this has had on the ooky things themselves. The more I own my insecurity (or whatever else), the more I treat it as just another part of me that sometimes needs to be dealt with rather than as a shameful secret I need to hide, the more secure in myself I feel. Tackling it without all that extra baggage has made it *so much easier* for me to deal with insecurity/etc quickly and easily.

The only real snag I sometimes run into is people who are surprised by my approach. Shame is so pervasive in our society and the push to hide what we are ashamed of is so strong, that people sometimes think that if I am admitting it, I must be in terrible shape. So then I explain all of this and how I am owning it and really, if I ask for a few words of reassurance that is actually all I need. As snags go, I think this one is relatively minor.

Overall, I increasingly think our culture of shame over our differences or perceived imperfections is a significant problem. The only people who seem to benefit from this are people who are trying to sell us things, and unfortunately there are a lot of those people. So, as much as I can, I reject this part of my culture.

Shame does not make me better.

Rejecting shame does.

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Filed under personal, that's not helping

labels, yet again

stock image by littledarksprite on deviantart

Will I ever be done with talking about labels? Probably not.

I want to talk about the autism vs. aspergers label again. I did once before, mostly to talk some about the arguments in favor of everyone on the spectrum calling themselves autistic, and why I disagreed with those arguments. Well, I’ve had some more thoughts on one point in particular that I want to get into more.

“They serve to alienate those of us who do not use that kind of terminology, and those who have never received the “Asperger’s” diagnosis, by separating one group of Autistics from another.”

This was one of the arguments that I talked a bit about. Or rather, I admitted that I did not understand what she was saying. I actually still don’t, but I think it might have something to do with solidarity and/or unity. Which is a worthwhile thing, even if I think the logic showed is flawed (assuming I’m interpreting it correctly). I mean, why are those who use the word “Asperger’s” alienating those who use the word “autistic” but not vice versa? It makes no sense to me.

Jumping a bit (you’ll see why soon), one of the discussion questions on the Asperger’s Support Network facebook page was someone asking for opinions regarding merging autism and Asperger’s into a single “autism spectrum disorder” diagnosis in the latest edition of the DSM. I found some of the replies interesting.

I am not happy. Aspergers has a slightly less negative stigmatism[sic] than the word Autism. It may be out of the DSM, but I will continue to use the term. There are a lot of ignorant people out there who are too quick to slap an overly negative label on a child sight unseen once the “a” word (autism) has been used.

 

 This is tragic. I am now 50. When I was in third grade I was diagonsed[sic] with “a touch of Autism” Everyone wigged out over the word Autism. This can not possibly be useful.

So apparently while some people are possibly seeking out a diagnosis of autism for the services they’ll gain access to, other people want to avoid the word due to a stigma attached to it. I find this unfortunate but understandable – people do react in different ways to the different words. I also find it interesting because it’s very different from how I’ve been finding myself thinking about it all.

Confession time – I have been finding myself increasingly wanting to simply call myself “autistic” rather than an aspie. This is not because of any thought-out logical reason, or for reasons of solidarity or to try to avoid alienating those who use the word autistic. No, this is because I keep feeling that I could gain more legitimacy this way. I keep fearing that by using “Asperger’s” people will think that I don’t really need help, or must not really struggle. And there are the “oh, you have Asperger’s? Well, you’re not REALLY autistic” people. Maybe they’re trying to be supportive when they say that, but I just wind up feeling alienated. And even in my tiny corner of the internet, I’ve run into people who tell me that since I’m “only” an aspie, my voice does not really count among autistic voices. So I want to claim the word autism as a way to claim my place. As a way to not be alienated, to legitimize myself, to say “I count too.”

Additionally, I struggle with feeling worthless kind of a lot. Sometimes I wonder if maybe it would be easier if I could claim the label “autistic.” That maybe it would make it easier to say “I have overcome x, y, and z obstacles to get to where I am now and that is awesome” instead of saying “I have not achieved a, b, or c. That is pathetic.” Rationally speaking, it’s fairly unlikely that a simple word change would make an ingrained thought pattern go away. I mean, getting my Asperger’s diagnosis ranks among the most validating events of my entire life, but the thought pattern is still there.

Once again, I do not actually have an answer to any of this. Only thoughts and rambles. I do, however, think that we would be better off if we worked to overcome the stigma of autism, rather than simply avoided the word because it’s ooky or something. Though I say that, but I must also admit that people need to decide for themselves where their energy should go. If someone is using all their energy just to try to get help and overcome whatever obstacles are in their life, I’m not going to judge them if they haven’t any energy left over to combat other people’s prejudices and biases about a word. If they choose to use a less loaded word because it makes their life easier, who am I to tell them that they’re wrong?

Then, of course, there’s this view:

Although my son has Aspergers the specialist put his diagnosis as high functioning autism so he would get easier access to services than with an aspie diagnosis so this should actually really benefit people x

Autism means better services. This is also sad, but unsurprising given the all too prevalent attitude that Asperger’s shouldn’t or doesn’t really count.

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We are not like this

Today I was going to post something light-hearted and silly, but that no longer seems appropriate. As I’m sure you know, on Friday there was a terrible mass shooting at an elementary school in Newton, CT. My heart aches for the victims, for their families, for everyone who was at the school at the time. For everyone who was is or now scared. It’s heart breaking, and the aching and sadness I feel is both overwhelming and hard to express.

As I read the updating news reports, I found myself wondering how long it would take before someone speculated that he had some form of autism, as it seems to be the thing people do now.

Sadly, it did not take very long at all. A snippet from a fox news article:

Ryan Lanza, 24, brother of  gunman Adam Lanza, 20, tells authorities that his younger brother is autistic, or has Asperger syndrome and a “personality disorder.”  Neighbors described the younger man to ABC as “odd” and displaying characteristics associated with obsessive-compulsive disorder.

And if you’re inclined to dismiss it because it’s coming from fox, I have bad news for you. This particular snippet is being repeated, more or less verbatim, all over the internet, from many different news outlets. I honestly have no idea what the original source was.

Personally, I don’t know if he was autistic or not. I don’t know if he was on the spectrum, or if he had a personality disorder or OCD or anything. Maybe he did and maybe he didn’t. Thing is, though, it does not actually matter if he did or didn’t. It’s irrelevant. The shooter committed a terrible crime, hurting many people. I do not know why he did it, but to blame it on autism is to tar an entire group of largely innocent people.

I have found a number of quotations by people demonizing everyone on the spectrum, or everyone with mental illness. I thought about quoting them here, but honestly, it’s too upsetting for me. Suffice to say there are far too many people claiming that there is a link between autism and violent behavior, and that no one on the spectrum, or with any kind of mental illness, should be allowed access to firearms, that everyone with mental illness should simply be locked away and other such things.

One I will quote came from a supposed expert talking about autism:

Amador, in discussing the possible role of mental illness in this tragedy, pivoted to Lanza’s alleged autism. “With his autism, his roommate Alex Israel mentioned that he chose not to… he preferred to stay alone,” Amador began, referencing an earlier segment with a longtime classmate of Lanza’s. “Well, actually, a symptom of Asperger’s, and this is one report coming out which may or may not be true, is something’s missing in the brain, the capacity for empathy, for social connection, which leaves the person suffering from this condition prone to serious depression and anxiety.”

Here I am, aching for everyone who was hurt by this criminal, and yet here we have people claiming that I cannot experience empathy. I can, and do, experience empathy. I may not experience it the way everyone else does, and I definitely do not express it in the commonly accepted ways, but that does not mean that I lack it entirely. That “something is missing in [my] brain.” To say so is an insult, is wrong, and is entirely inappropriate in the wake of such a tragedy.

A diary of a mom wrote an eloquent post on empathy and autism on Friday morning, and on Friday afternoon wrote another post about what happens when people demonize those on the autism spectrum:

My post this morning about how dangerous it is to allow society to dehumanize our children? To allow the misperception that because they don’t necessarily express empathy in the way that we expect to see it then it must not exist to stand unchallenged?
Here it is, my friends.
This is the result.
Our children — our beautiful, delicious, and yes, challenged children — are something to be afraid of.

The real point I want to make, though, and I really hope I have not taken too long to make it, is that any supposed link between autism and/or mental illness and violence is simply false. It’s terrible misinformation, damaging to everyone (not just us autistic people, I really mean everyone), and it hurts me personally to see it.

The Autistic Self Advocacy Network (ASAN) released a statement on the subject, here is just a snippet:

Autistic Americans and individuals with other disabilities are no more likely to commit violent crime than non-disabled people. In fact, people with disabilities of all kinds, including autism, are vastly more likely to be the victims of violent crime than the perpetrators.

To back up ASAN, I found a blog post with some stats on crime and mental illness, which again I am not going to quote here as I find them distressing. Still, it is worth a look if you’re interested.

I also found a scholarly study on the topic, which found:

based on the low number of violent patients with Apserger syndrome estimated on the basis of the above studies and the relatively common occurrence of violence in the general population, we do not believe that any true association exists between the two conditions.

Also in the study, the rates of violent behavior they found ranged from only 2.27-5.58% for individuals with Asperger Syndrome. Importantly, the rates for the general population range from 6-7%. Which means if anything, we aspies are LESS likely to be violent than the general population, not more. Yet people continue to perpetuate the idea that people should be scared of us. That we are violent and dangerous and should not be let out in polite society.

Finally, even if we broaden this beyond autism into illnesses that are, in fact, linked to violence, it’s still wrong. Maia Szalavitz put it really well in her article here:

And yet most mentally ill people — even those with conditions that have been linked to violence, such as addictions and schizophrenia — are no threat to anyone other than themselves.

the majority of people with schizophrenia (about 1% of the population) never commit acts of violence.

Schizophrenia doubles your odds of becoming violent, but being a man multiplies your risk by a factor of nine. Yet we don’t stigmatize or reject men for this risk factor; similarly, we shouldn’t treat the mentally ill that way.

No, we really shouldn’t treat the mentally ill that way. Yet all too often, we do.

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Filed under boogeymen, issue