Category Archives: issue

Trust

Image is of a “trust fall,” an exercize where a person falls backwards with someone (or several people) behind them, trusting that said person(s) will catch them. Once was doing a trust fall thing with someone, and they dropped me.

I don’t think I’ve talked about trust much before on this blog and to be honest, I’m not sure why. I do a lot of thinking about trust, largely because my relationship with trust is more than a little bit dysfunctional. I’ve often wondered why that is, and it seems the Aspergers might just play a significant role.

Trust is such a weird, tricky thing to me. What does it mean to trust someone, or not trust someone? I often feel most comfortable in the in-between space, where I neither trust nor distrust. Everything just is, without expectation. However, while that sure sounds lovely and makes for a nice little sound-bite, it does not necessarily translate very well in reality. Expectations come with knowing someone well or for long enough, and it’s a normal part of interaction. So while I tried to just fling the concept of trust away from me for several years there, it did not work very well.

Nee actually has a definition of trust that I find pretty nifty. Basically, trust is, to him, about predictability. Trust is knowing reasonably well how a person will act in a given situation. In this case, trust is not always positive. Sometimes, I can trust that a person will let me down, or trust that someone cannot keep a secret. This influences my behavior and what I choose to share and how I choose to interact with them.

I still feel weird about the word, though. I think it’s one of those nebulous concepts that I have so much trouble with. I can’t nail it down, so I feel like I’m trying to wrap a net around fog when I try to get a solid handle on what it is.

Another important point about trust (wow, I’m jumping all around here) is that even for a single individual, trust is non-transferable. Maybe I can trust that someone will keep something private, but not trust that they will be kind to me in a conversation. People are strange and unreliable creatures, and a person might be super reliable in one sense and not at all reliable in another. Or, even worse, they might be totally reliable one day and not at all reliable another.

Navigating all this complexity is very difficult for me. I wish people were more consistent, but they just aren’t. I suspect my own inability to keep up and to accurately assess people’s moods at a glance really has an impact on my willingness and ability to trust people.

Nonetheless, I have found that I still have the ability to feel betrayed by an action. It stands to reason that if I feel a sense of betrayal due to someone someone did, I must have first had a sense of trust that they would not do that thing, right? So it’s tempting to attempt to go back to no expectations – only there is a point where lack of trust and distrust become very similar, and people, in my experience, do not care to be distrusted. It is insulting.

I also think that in my case, my autism makes me more vulnerable. I have an unfortunate tendency to believe people, which can very easily lead to my getting hurt. I also seem to view socialization in a simplified way, causing me to miss nuance that might be obvious or important to someone else. (of course, this goes with my usual rant that this is, of course my fault, and if other people miss nuance that is obvious or important to me, that is somehow also my fault. I think differently, but that doesn’t make me less)

I don’t actually have any answers here, only perspective. The perspective of someone who is frequently confused by this “trust” thing, all too frequently hurt, and who has little idea of what to do with it all.

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Being Like Me

Image is of a polio ward full of iron lungs, 1953

I am autistic. On the autism spectrum. An apie. Has Asperger’s. Pick your wordage.

There is an ongoing debate that Will. Not. Die. regarding whether or not vaccines cause autism. The usual response to the anti-vaxxers is that there is no evidence that this is the case, and studies indicating that vaccines do not, in fact, case autism. There there was that video by Penn & Teller showing probabilities in a very visual way, basically saying that the risks associated with not vaccinating are far higher than the risk of vaccinating, even IF vaccines do cause autism.

Thing is, both of these responses are ignoring one key piece. A piece that is, from my perspective, absolutely and completely vital. It is taking the argument on the anti-vaxxers terms, not questioning their implicit assumptions, and that is dangerous. We MUST call out implicit assumptions, and challenge them if necessary.

The implicit assumption here, rarely stated explicitly but present in every “vaccines cause autism!” argument is that it is better to die from a preventable illness than it is to be autistic.

It is better to be dead than to be like me, according to these people.

And you know what? There have been times where I actually believed that. I thought that yeah, being dead would be better. And that is so, so dangerous. Is that the implicit message we want to send to autistic people, of any age? Because when we fail to challenge that implicit belief, that understatement that is so easy to overlook in favor of arguing whether or not vaccines really do cause autism, that is the message we are sending. That yeah, it’s better to be dead that to be autistic, we just need to know whether or not vaccines are involved here.

If it were proved that yeah, vaccines cause autism, would that make refusing to vaccinate ok? Because when we exclusive focus our argument on that, to the exclusion of “it’s ok to be me” which yes, is totally an important part of this discussion, we are still saying that death is preferable to autism.

Let’s not send that message to ourselves, our children, our community, or ANYONE. Being like me is most definitely not worse than being dead. If I had a choice between being autistic, and being neurotypical but unprotected against measles, mumps, rubella, hepatitis B, polio, diphtheria, tetanus, pertussis (whooping cough), HiB disease, and chickenpox, I would pick autistic any day.

Being like me is challenging and frustrating and sometimes painful, and it is also wonderful and interesting and ok.

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Filed under death, issue

Recognizing Faces

Retrospective

I’m pondering recognizing faces today. Or rather, not recognizing faces.

See, I’m not so good at recognizing people by their face’s. It’s a fairly common thing in Asperger’s. It actually has a name – prosopagnosia, and I have it, if only relatively mildly. I mean, I can recognize some faces, some of the time, but really not consistently and often cannot tell people apart even if everyone else thinks those people look totally different. Case in point – remember those Lord of the Ring movies? And two of the characters were Aragorn and Boromir? I had to watch the entire trilogy through three times before I could even begin to tell them apart, and even now it’s tricky. To me, one brown-hair-and-a-goatee looks like any other brown-hair-and-a-goatee. High school was rough, let me tell you.

This actually popped to mind because I was pondering my cat. Tarball knows me quite well at this point. Probably mostly by scent, but my face seems to have some meaning for him as well. While I stop recognizing someone if they change their hair in some significant way, Tarball seems to have no trouble. I cut off all my hair a while back, and he never even blinked. I find myself wondering – does he notice at all? Does he recognize my face? If so, what about my face is it that he notices? Or is it more my scent, my posture, my voice (those being the things I myself can more consistently recognize people by)?

Then I got to wondering if he does have some form of facial recognition, what does it go by. What does he look at? When I look at faces, I never see a whole face. At least, not in the way I’ve heard it described. I see pieces. Chin, nose, cheeks, forehead, hair. I actually cannot recall whole face in my memory or visualize a face in my mind. Only pieces. I suspect I miss a lot of nuance in faces.

Sometimes I wonder what it must be like to just see a whole face. Apparently for NTs, that’s now it works – whole faces. Not pieces and parts seen a bit at a time, but just… an entire face. I feel like I am not describing this particularly well, but I doubt I can do any better given how foreign it is to me.

I’m not sure why, but it is a bit easier for me when I’m looking at a photograph of a person, rather than the person themself. Though that gets into the trickiness that pictures of the same person photographed from different angles or with different facial expressions will look like entirely different people to me. That’s a little weird.

A face only becomes even vaguely unified once I get to know a person, or at least once I see them enough for their features to become distinctly *them* rather than just a collection of features that could be anyone. I still don’t see whole faces exactly, but I can recognize them against other people with similar features, and their pictures all look like them.

This is another post without much point. I just felt like exploring the concept, since my cat seems to have no troubles here and it popped to mind. Faces are just such strange, tricky things. It’s hard to know what to make of them.

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Why are scripts so bad?

Ok first, let’s talk terms. In the autism world “scripting” generally refers to the practice of taking chunks of dialogue from places like tv shows or movies, and replaying them out (often over and over and over again) in real life. Sometimes it involves wanting other people to play a role in the script, to make a dialogue.

Frequently when I see people (particularly therapist types) talking about scripts, it is in terms of how you shouldn’t engage, shouldn’t participate, because that just encourages the behavior. Which, of course, carries the implicit assumption that there is something wrong with the behavior and we should ignore it until it goes away.

To which I ask – WHY??? What is so awful about scripts that we should just ignore them, regardless of the reason a person may be engaging in them, regardless of what may be communicated by them? It is because it looks autistic and we gotta look normal? Is it because neurotypicals get exasperated by lots of repetition? Seriously, what?

Luckily, there are also lots of people out there explaining about how scripts are communication. When we can’t put together words on our own, scripts provide words that are already put together. Now, I was not a scripter in that way, so I do not feel qualified to explain extensively about how scripting is communication. Instead, I will refer you to other sources who have explained it all excellently.

https://adiaryofamom.wordpress.com/2014/07/01/she-gets-it/
http://emmashopebook.com/2014/10/09/scripts-a-communication-bridge/
http://www.thinkingautismguide.com/2012/03/scripted-language-and-authenticity.html

That said, I AM someone who was verbally precocious (I started speaking at 6 months) but who also finds that the connections between words, sentences, and conversations to be tenuous at best.

See, I like words. Words are pretty cool. I knew words at a *very* young age. Go me. However, putting words together into sentences is challenging. My mom, well before we figured out what was going on with me, would sometimes tell me about how, as an infant, I would “practice” talking. My mom and I would also practice conversations before I could talk. She would say something, I would babble, she would reply as though I had said something that made sense, I would babble more, and so on and so forth. I practiced a lot.

Now let’s talk about when I was older. I can remember as a child, needing to spend time before I was going to talk to someone making sentences. I needed to figure out what I was going to say and how I was going to say it, because figuring that stuff out on the fly is incredibly hard. I also tried to predict what they would say in reply and formulate my responses ahead of time, so that I could do the conversation thing. That one tended to not go very well because people did not follow my scripts, and then I would flounder around trying to think of what I want to say, why I want to say it, how I should say it as fast as possible, all while they looked at me funny for taking so long. If I explained that it was because they didn’t follow the script, they would laugh at me for trying to script out my conversations. You’re just supposed to “go with the flow” don’t ya know.

As I’m sure I’ve expressed before, it still can take me a long time (up to months, sometimes) to put together my words into a way that conveys what I want it to convey. I have to think really hard about what I want to say, why I want to say it, what words to use and what order to put them in. And then if someone asks a question I’m not prepared for or responds in a surprising way? I have to do it all over again, and it takes time.

Most people don’t want to give that time. ESPECIALLY to someone who can pass for normal on the surface. What I do now is usually stumble around with a few of my rote responses, trying to pick one that sort of applies to the conversation so that they’ll stop looking at me expectantly and I can work through my words later.

This is not actually a fabulous solution. My rote responses are limited and people can usually tell that there is something a little … off … about my reply to them. It can also mean that I sometimes unintentionally give people the wrong impression about what I actually think or feel, which can make things really awkward later. Then, when I do finally have my words, they’ll be all “but we had that conversation days/weeks/months ago! And you said [something else]! Why are you only now telling me this, and why did you not tell me then?” And trying to explain all this, about how long it takes me to find words, about how much I think through before I can put my words together, is not an easy thing to do. I have not found many people want to listen, or understand at all. I’m “high functioning” so people can get really surprised when they learn I have very real challenges. Sometimes they get angry. People are strange.

I’m trying to find a better solution, but it’s tricky. Sometimes, when I think I won’t need more than a few minutes, I’ll just say “processing.” I got that one from Data on Star Trek:TNG. But when I need more time then that I just don’t know. (any ideas? I could use them)

So getting back to what started all this exploration – let’s imagine someone who has much more trouble that I do with making sentences. Who *really* struggles to make sentences fast enough to have conversations, or maybe just can’t make sentences that fast. Scripts provide pre-made sentences and conversations that make communication possible. *Talking* communication, which so many people value so highly.

It does not make sense to me to insist on talking, on sentences and conversation, and then reject an incredibly useful tool for having those sentences and conversations. If you want conversations, maybe let us have our stepping stones. You are asking something very challenging of us; yeah, it’s cool to be able to converse, but I can’t do it as easily as you do.
So I gotta ask – what is so bad about scripts? I just don’t see it.

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Depression is a deadly illness

As I am sure everyone knows by now, Robin Williams died from depression yesterday. The internet is abuzz. I feel some need to contribute, but everyone is so articulate already, but by the time I would have the words to be articulate myself everyone will have moved on to the next thing. So I am going to try to say something, even though I don’t have the words yet.

I have thoughts. Thoughts about how depression is a deadly illness that we need to take seriously.

Thoughts about how I am heartened and surprised by the outpouring of compassion I am seeing, when I am so used to seeing the opposite when it comes to dying of depression.

Thoughts about the problems inherent in our “battle” metaphor of illness, and how those problems can be really thrown into sharp relief when it comes to mental illness, depression, and dying of depression.

Which leads into thoughts about the words I don’t want to use, like “losing his battle with depression.” The metaphor is all wrong, but I can’t articulate it yet.

Thoughts about death and grief and the nature of loss, and how public loss and private loss are different but not really.

Plus a smattering of frustration that it really does take me a while to find the proper words to express my thoughts, and everyone else seems so much faster than I am.

Maybe some of these thoughts will turn into blog posts eventually, who knows. Right now, this is the best I can do.

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It’s not a Contradiction

There are two primary ideas that this post is all about.

Both of them are true.

1. I am ok just the way I am. I deserve to like myself and be liked by others. In fact, learning to like myself is one of the projects I am working on.

2. I need help, therapy, meds, support, and accommodation. I am constantly working on self-improvement projects and making myself better than I am.

On the surface, I think these two things can seem contradictory. If I like myself just the way I am, why am I trying to change? If I am ok, why do I need help and support? When I first started thinking about this post, it occurred to me that this apparent contradiction might be behind some of the friction between autistic adults and parents of autistic children. It’s like when I wrote about not wanting a cure, and a parent thought I was saying we should not get help or treatment. I wasn’t saying that at all, but somehow that’s what they heard.

All too often, when autistic adults are trying to push the first point – that we are ok just the way we are – people hear a negation of the second point – that we shouldn’t try to improve ourselves or get therapy or accommodation or help. As an adult on the autism spectrum, this can be INCREDIBLY frustrating. It often feels like my words are not being heard, or are even being deliberately twisted. I want acceptance, and I am accused of claiming I don’t need help.

So I think we need to examine our assumptions. Parents – I’m looking at you here. Neither statement negate the other. In fact, when I think about it, I think they go very well together.

Because I am ok just the way I am, I deserve help, therapy, meds, support, and accommodation. I am ok just the way I am, therefore it is ok to ask for what I need. I like myself, therefore I want to be the most awesome that I can be. Why settle for only kinda awesome when I know I could be EXTREMELY awesome? As a matter of fact, my mentality of working to better myself is exactly one of the things I like about myself. Go me!

Right now it feels like if an autistic advocate wants to promote the first point, they must also address the second point just to avoid being misrepresented by others. I find this really sad and wish it weren’t that way. Sometimes, when that happens, it feels like parents must believe their autistic children are NOT ok they way they are, deserving to like themselves and be liked by others. I often find this very distressing and wonder why it so often seems that we have to choose between one of the other – we’re ok OR we need help, but apparently never ever both.

So I just want to say – yes both. I am ok. I need help. IT’S OK TO NEED HELP. And liking myself is one of the best tools in my arsenal to get the help I need, and continue to improve and learn and develop. I can tell you from experience – it is incredibly difficult to move forward if I do not like myself or think that I deserve to move forward. They absolutely have to go together. And when I say that autism deserves acceptance, and that I am ok just the way I am, I am also saying that the help and accommodation I need are just as ok. We are all interdependent anyway. My interdependence may just look a little different from yours, that’s all.

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What Now?

The big thing that’s been on my mind lately is where to go now, since that big, ugly blow-out. There’s been very little else, at least in regards to my blog. So I figure I might as well write about that, since that’s the thing on my mind.

I’m still frustrated and hurt, though it’s less acute now than it was when it was happening. A huge frustration for me is when people disagree with things I never said, but act like they are disagreeing with me. Luckily it’s not exactly SUPER common in my life (though I can think back to certain people who did this a lot), but it’s common enough and I find it PROFOUNDLY frustrating. I know at least part of it is my fault – sometimes it’s hard for me to be clear and sometimes I don’t spend as much time as I should making sure a post is clear to anyone, rather than simply who I imagine my audience to be. Sometimes I muck up my exformation and just assume that people will be able to fill in the blanks that I leave, because I think that it is so obvious that it goes without saying. Of course, blogging doesn’t work that way. Never think something is so obvious that it goes without saying.

And some of it is other people being well and truly awful, coming in with preconceived notions of what I meant and refusing to actually read my words they way they were intended and insisting on projecting their own issues onto me. This… probably shouldn’t surprise me. There is a lot of horribleness out there, and a lot of people are willing to engage in horrible behaviors regardless of whether or not they are horrible, and if a topic is sensitive enough people often have trouble because they have their own lenses they look at things through and if something doesn’t fit into that lens just right, they just blow up. Sometimes in hordes.

I don’t deal with that well. I’m sensitive. I’m also very unsure of how to respond. I mean, when I say, “blueberry pancakes don’t taste good to me” and then someone yells “HEY! Pancakes are nutritious! I disagree with you!” I get very confused. I wasn’t talking about the nutritional content of pancakes, what did I say that they are disagreeing with? I have yet to find a way out of that. If I say “um… I don’t think you understood what I was saying” I get accused of being whiny or acting like I believe they should just agree with me. If I get frustrated, people think I’m mad because they’re disagreeing with me and I clearly just can’t take disagreement. So more and more when that happens, I just back out of the conversation and try not to talk to those people anymore.

So… now what? I’ve done very little writing in the past several weeks (just this post, and the previous two that I posted) and I will admit, it’s been a load off my mind. Blogging is way more challenging than I ever really realized, and trying to push out two posts a week that are thoughtful and articulate and are saying something that I care about saying is hard. I have no idea how daily bloggers do it, I really don’t. As it is, the time I spent posting twice a week (and quite a bit of time before that) involved thinking about my blog every day, often for several hours a day. While the rewards have been great – a slowly growing readership, gradual increases in the amounts of comments I get (please never feel like you comment too much. as long as you aren’t hateful and awful, I LOVE comments. they help make all this writing worth it), the belief that I am helping a at least a few people out there. I am advocating, and I care about that. But with short but intense lashback, it’s become more difficult to see those rewards in the face of the effort I put in. I keep hoping this will change at some point, but right now it’s still difficult. It’s hard to try to advocate when my words are twisted and mangled and thrown back in my face.

In the meantime, I do still have 11 posts in my pending queue from before all this happened waiting to be posted, and at the very least I want to get those out there. I don’t want to quit – blogging is great and I like to write very much and I still hope to someday have many more followers – but, well, I’m not sure where to go from here. I’m not even sure how to continue. What if I’m just too sensitive to face the awfulness of the world? I’ve always been a wallflower, and even now I tend to stay on the edges. Putting myself out there and trying to make myself heard is incredibly difficult – I am not one of those charismatic people who seem to be able to make others listen, and on some level I just believe that I am not the kind of person who will ever be even a little bit known. I’m just me, not that special.

And, you know, if that’s what being known is like, do I really want it anyway?

So… I don’t know. I do think that if I do continue I’ll need to make some actual posting guidelines – something I had avoided because I kept telling myself I wouldn’t need them. Basically, they would say that if you’re going to disagree with me, do so respectfully. Write it out, let me know, maybe we can have a conversation about it. Maybe I’ll learn something, or maybe it’ll turn out that you thought I was talking about the nutritional content of pancakes when I was just trying to talk about my preferences for blueberries or lack thereof, and maybe we’ll just plain disagree with each other. Hatefulness, though, is just not gonna fly. And if people think hateful commenting counts as respectful disagreement, well, that’s their problem, not mine.

Still, there’s a lot of uncertainty. What do you think?

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Cochlear Implants

Actually, the title is a wee bit misleading. I’m not actually here to talk about cochlear implants. Honestly, I don’t know enough about them to make a properly informed blog post. Instead, I’m here to talk about my recently learning about the cochlear implant controversy, and the fact that I found there to be a striking number of parallels between that controversy, and things the autism community is dealing or fearing for the future.

First of all, I can’t really give you an in-depth look at the controversy itself. The best I can do is a vague overview. I started here  and will be drawing heavily from this link for this post. I highly recommend that you read it yourself – it’s basically talking about the cochlear implant mess from the perspective of a deaf person. I first heard of this controversy when Nee told me about hearing something on slashdot. What he heard there was that there are claims that cochlear implants are “destroying the deaf community.” There was little else, but it did immediately make me think of the fears of an autism cure in the autism community. So I decided to look into it. What I found was disturbing.

There is fear mongering and ableism. “We have doctors telling new parents who just gave birth to a deaf baby that their baby is doomed–that she will never have a job, lead a normal life, etc. Despite the fact that 95% of deaf people often prove those doctors wrong on a regular basis everyday.”

There is the inspiration porn – all the videos depicting deafness as something tragic and life-destroying, but with a cochlear implant (or CI for short) this poor, broken person got to hear for the first time! How inspiring! *retch*

There’s the ignorance – people advocating for CIs without really understanding what’s involved, what the risks are, what the drawbacks are.

Worth mentioning – apparently none of these issues are making it into the discussions on CIs. Anyway, let’s talk about that last one for a bit. Again, I was certainly quite ignorant. It just wasn’t something I had thought about much. But then the article directed me here and I read the lengthy list of risks and drawbacks and WOW that’s sure never talked about in the inspiration porn videos. One that jumped out at me was MRIs – if you get an CI, no more MRIs for you ever, unless you get it surgically removed. Can you imagine? A central diagnostic procedure is just off the table for life.

Another one that jumped out at me was this one:
“An implant may

  • set off theft detection systems
  • set off metal detectors or other security systems
  • be affected by cellular phone users or other radio transmitters
  • have to be turned off during take offs and landings in aircraft
  • interact in unpredictable ways with other computer systems”

These are not small, easily mitigated risks! They are HUGE negative impacts on a person’s life! Nor are they temporary – these were described as “lifestyle changes” in the list of risks.

Yet despite all the risks and all the drawbacks, people push this “cure” on people who are deaf or hard of hearing, regardless of their actual need. It is treated like some kind of magical panacea, but it is not. It is not a cure – it is unlikely to allow a deaf person to hear the same as a hearing person. It takes a year or more to fully learn to use. It has different degrees of effectiveness on different people. It might not work at all, and in rare cases the attempt can actually destroy what little hearing a person had. It it is quite likely the right answer for some subset of the deaf population, but it is being pushed on EVERYONE, regardless of if it is the right answer for them or not.

The big thing, though, is that the deaf community is facing, RIGHT NOW, what we in the autism community fear happening in the future. The parallels are evident and unavoidable. Honestly, I think we should find a way to get involved. Let’s not say “it’s not us, so it’s not our problem.” Let’s not sit back and let a population of ableist, inspiration-porning people think that it’s ok to shove people towards massive life-changing decisions that may or may not be the best choice for them. Let’s not just turn our backs on another group whose difference is condescendingly treated as some kind of tragic disability by the population at large. Let’s not just sit by and allow a dangerous precedent to be set by fear-mongering doctors and well-meaning but ignorant friends and family members. Right this minute I don’t actually know what we can do, but at the very least we can make some noise. This is me, standing up and saying “this is not ok.”

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Well… I tried

This blog post has multiple starting points all converging into a center that I want to attempt to convey, and I’m having trouble figuring out which of those points to use. I rather want to use all of them.

Ok, so I’m not much of an activist. I don’t march on Washington and I’ve never met a senator to express my viewpoint or joined any sort of rally ever. Rallies are not sensory friendly. However, in my own small way I try to make my voice heard. This is about one of those attempts. Sadly, I don’t think I succeeded.

Moving on, there’s this journal called Narrative Inquiry in Bioethics, or NIB for short. I think what they do is AWESOME and I got super excited when I first discovered them. From their summary, they explore “current issues in bioethics through the publication and analysis of personal stories, qualitative and mixed-methods research articles, and case studies.“ It’s the “personal stories” part that really got me going. Basically, they put call-outs for papers from anyone who has had an experience with whatever bioethic issue they are exploring. I find myself hoping that someday they will put out an issue that I could write something for. My point here is that I want to make it clear that I view this publication in a very positive light. I LIKE them, I like what they are doing, I like the whole thing. It’s an awesome approach to academic exploration of a topic, and I do think that personal narratives are important.

So when they posted this…

(image description: pale pink/peach background, text reads “don’t be ashamed of your story it will inspire others)

… I was a little put off. You might wonder why. I mean, they clearly meant it in a positive way. However, it definitely slid too far towards “inspiration porn” for me to be at all comfortable.

I’ve pondered trying to write up a post about the problems with inspiration porn, but I’m not yet at the point where I can really go over what’s wrong with it and why. Luckily, lots of other people already have and there are massive amounts of information all over the internet where people talk about how inspiration porn is harmful. I am leery of attempting to sum it all up but I fear I must as asking anyone who reads this to go looking for the answers elsewhere seems a bit much. Basically, inspiration porn tends to take ordinary experiences and acts like they are extraordinary, because the person who did those ordinary things is disabled. It tends to treat disabled people both as sad, broken things we can’t really expect to be functional in any way, and to reduce their lives and struggles to some inspiring moment for the benefit of a person who is not disabled (I hesitate to say “able bodied” as it is not always about physical challenges). Basically, inspiration porn is bad.

Now, to be clear, I do think that there are very good reasons to share and explore personal narratives. We can learn from people’s stories, we can find patterns that are good, or patterns that need to be fixed. We can, for instance, explore a bioethics issues from the perspective of the people who have actually experienced it. That said, “because someone, somewhere might find it inspiring” is NOT on the list of good reasons to share personal narratives.

So basically, when NIB shared this image, I was put off. I thought they were better than that. I thought they were doing something awesome. I thought that maybe they should know. So… despite the hubris and presumption involved in calling out an academic journal associated with John Hopkins University, I said something. I tried.

Me: “In the hopes of giving a gentle nudge… have you ever heard the phrase “inspiration porn” and what disability activists think of it?”

What’s cool is they actually did reply… but I don’t think they understood. They clearly did not look up the phrase before replying to me.

NIB: “No, never heard the phrase. This meme fits NIB pretty well, not just our symposium on disability but all our symposia. Each issue of NIB is about sharing stories to help bring more voices to the discussions.”

So after thinking about it for several hours, I tried again.

Me: “I’ve had to think about this for a while and unfortunately this is not a topic I am particularly articulate on just yet so ultimately I will need to refer you to other sources.

“First of all, I think NIB is a great project. I got excited about it when I first learned of it, and I hope someday that you will have a call-out for papers that I can contribute to as I would love to be able to write and share my own story.

“So it was really disappointing to me to see this meme. “Inspiration porn” is a problem, and I had thought that NIB was better than that. I think you still can be, but you need to talk to disability activists to learn the problems involved in reducing real human lives to “inspiration.”

“There is a lot out there on the internet, but here is a place to start. (link)”

That was the end of the conversation. They never did reply to me, so I’m guessing my words did not make it through. Which is sad, but ultimately not surprising. I was presumptuous, I stepped well outside my comfort zone to basically scold a journal I thought maybe needed to learn something. While I tried to be gentle, that doesn’t change what I did.

Since then I’ve had mixed feelings about the incident. Partly I wonder if I should have just kept my mouth shut, not said anything, just left it all alone. I’m also a little disappointed that they just don’t seem to care. I worry that in the end, this is just another group that wants to talk about without talking to. I don’t know for sure; I can’t really know, really. But what I do know is they apparently don’t have time for me, or time to look into why disability activists don’t like certain things.

I still like NIB, at least in concept. But this interaction has soured them just a little in my eyes.

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Filed under issue, that's not helping

How do I handle change?

Short answer: not very well.

Ok, ok, that’s no good for a blog post. This is actually a really old idea on my possible blog topics list. Sufficiently old that I actually don’t remember what inspired the idea. Probably a facebook comment I saw somewhere, or maybe a comment on a blog or article I read. In any case, someone was asking about autistic people and handling change.

Now, not to be a stereotype or anything, but I really don’t like change. Sameness is happiness. Ok, it’s not that simple, but still. I like predictability, I like routines, I like knowing what’s happening. Not that I’m alone in this. I mean, it’s pretty much a cliche that if a website changes its layout, everyone will immediately hollar and complain about how horrible the change is and how much better it was before, even if it turns out that the change was for the better. I really suspect that no one likes change.

However, difficulty handling change does seem to be considered an “autistic thing.” Honestly, given that I think it’s an “everyone thing” I suspect that it’s less about change specifically, and more about other things on the autism spectrum. Maybe sensory stuff, maybe differences in how we express displeasure or stress, and honestly, maybe we really do have a harder time with change than NTs. I wouldn’t know, since I would need to experience the world as a NT in order to compare and actually see if there are substantial differences.

Anyway.

I do have a hard time with change, and yeah, it’s a thing for everyone, to a greater or lesser degree. So the question was about how we make it easier (it may have been directed at other parents, because lots of parents don’t seem to direct their autism questions to, you know, autistic people, but that’s another rant entirely and it doesn’t really matter for the substance of this post). In that vein, what do I do to deal with change? I don’t feel like I know enough about this to officially make it part of my How Do I Adult series, but here are some things kinda in that vein.

A big thing is that I really try to avoid being surprised by change. People who know me generally know to give me a heads up if a change is coming up so that I have time to adjust. A while back I changed riding instructors. My original instructor let me know several months in advance that at a certain point she wasn’t going to be able to teach me anymore so I had lots of time to get used to the idea. Changes to my routine are always thought out in advance and usually discussed with Nee, even if they don’t actually impact him in any way. I do the same thing with changes in plans.

Speaking of plans (this is kind of related to this topic) – I don’t do spontaneous. It’s just too stressful. I know that “normal” people seem to think that spontaneous socialization = better socialization, but this just isn’t the case for me. With a lot of personal work over a long period of time (we’re talking years here), I’ve managed to whittle down the amount of advance time I need to be comfortable with a socialization plan to be only three days. Still, I prefer more advance notice if I can get it.

Changes to previously laid plans also generally call for advance notice if possible. The theme here is giving me time to adjust. I just need processing time.

That said, sometimes shit happens and advance notice just isn’t going to happen. Plans get cancelled, weather happens, people or animals get sick. What then?

Well, I have a few things I do to make this easier on me. A BIG one is to remove myself from the situation that is stressing me. I mean, if a plan is cancelled I can’t suddenly make it happen. But if I find myself somewhere I didn’t expect to be, allowing myself to leave, even if it’s just to go outside by myself to breathe, is huge. Part of this is that I cannot handle feeling trapped (seriously. cannot), and part of this is that if I’m in an unexpected situation I might not be processing everything very well and I just need a time-out to let my brain catch up.

Another, more recent, this is to let myself be grumpy. Now, this one is much more viable now that I am on the antidepressant and random negative feels are much less likely to trigger a horrible crash and depression episode. So now I can just let myself be grumpy about, say, riding being cancelled because of extreme cold.

Before the meds, grumpiness had to be handled much more carefully because as mentioned, there was a not-insignificant risk that it would trigger a nasty crash. However, I can’t force myself to cheer up, nor can I force feelings I don’t want to go away. So mostly I tried to keep an equilibrium (breathe… breathe… breathe…) and brace myself against any icky feelings that came from plans being changed.

I also try to structure my life to maximize my ability to handle changes or the unexpected. I have a certain level of regular, weekly routine that I always follow. If that routine gets messed up for some reason, I get REALLY stressed. However, if I can keep to that basic routine, I have a lot of room around it for various things. I mean, ok, not impromptu socializing, but I can handle short-term decisions to, say, go grocery shopping or do other low-level evening things with Nee. A big thing, though, is that having a certain amount of my weeks always look the same makes it easier to have other parts of my weeks not look the same. Maybe THIS saturday I plan to visit a friend, and THAT saturday I go to a religious function, and THIS wednesday I plan to go to a movie. These week-to-week changes, even planned in advance, are largely possible because of the predictability I keep in my life.

I have no idea if any of this will help anyone else, and I think I got a little rambly, but there it is. Change. Change is serious business. Srsly.

 

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Filed under issue, personal