Category Archives: that’s not helping

Not a Cure

The cure vs. not cure battle seems to be continuing to rage on. Ages ago I made a post with my take after someone accused me of not needing any kind of help, since I am against being “cured.” It seems that to some people, it’s a binary. Either we’re just fine as we are and don’t need help or treatment, or we need to be cured. The reality is, of course, more nuanced, with different individuals needing different amounts and different types of help and treatment.

So, looking at the cure stuff, it seems that there is a pretty big disconnect between the broader autism community, and how some parents think of it. See, to autistic adults, most of us see autism as an identity. As a neurology. To get rid of the autism is to fundamentally change who we are.

I gather, though, that to some parents of autistic children, they see it differently. See, autism is diagnosed by behavior. While scientists are slowly researching how autistic brains are different from neurotypical brains, it’s still an area that we don’t really understand, and we are very very far away from using that kind of information in diagnosis. Behavior is all we have. So “having autism” is, in a sense, synonymous with “being diagnosable.” Of course, there are problems with that logic, and one of the big ones – the one I am wanting to talk about here – is how some people use it for their idea of “cure.”

Basically, for some parents, “curing” their child only means making them no longer diagnosable. And making them no longer diagnosable means making them get rid of the behavior used for diagnosis. And when I think about that, well, it’s quite distressing.

See, I could probably learn to stop stimming. But it would leave me constantly tense and uncomfortable, it would eliminate a huge part of my body language, and I would have to keep a fairly significant portion of my attention dedicated to preventing stimming. Sure, it would reduce how diagnosable I am, but it would not better my life in any way. Quite the opposite.

If there were enough external pressure, I could probably succumb to not showing my sensory issues. I could choke down food that makes me gag (well… maybe. The gagging can get pretty bad). I could sit in silent agony as clothing tags dug their way into my skin. I could learn to not flinch at painful lights and noises (which, actually I did learn that one a little. It’s not a skill I particularly enjoy, and I am working on getting rid of it).

I could take intensive social skills classes. Which, actually, wouldn’t necessarily be bad. My social skills are way behind other people in my age group, and this is very much an area where I need help. As I’m pretty sure I’ve written about before, my ability to handle parties or similar forms of group socialization is approximately nil. I just can’t do it. So teaching me to handle stuff like that would be good.

On the other hand, not all ways of teaching “social skills” are about bettering an autistic person’s ability to actually interact. Sometimes they are about hiding our weirdness. Things like forcing eye contact regardless of the pain involved. Or forcing us to touch people even if it makes us feel sick or panicked.

So if my childhood had included all that kind of “help,” and somehow I learned to cope with that stuff without more or less constant meltdowns, I might have stopped being diagnosable. But the thing is, I would still be autistic. I simply would have learned how to hide my autism. And it wouldn’t even be able to last long term. As life continues, as the challenges of life increase, it would take more and more effort to maintain the facade. My ability to do anything else would diminish more and more. Eventually, the house of cards would crumble. Inevitably.

Making the autism invisible does not get rid of it. All it does is make it so neurotypicals can happily pretend it isn’t there.

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“If you know you’re crazy, you aren’t”

I’ve heard that line a lot in my life. I grew up with it, I’ve heard it from all sides. When I questioned it, I learned that there are a lot of people out there who take that idea very seriously, and consider it some sort of absolute truth.

If you haven’t guessed already, I disagree.

Of course, a lot of this is about how you choose to define “crazy.” This is YET ANOTHER strange, nebulous term that’s difficult to pin down. There are so many.

See, I think a lot of people see crazy as some sort of absolute. You’re either *all the way* crazy and every tiny bit of sanity is utterly gone, or you’re sane. It’s one or the other, there are no in-betweens. I do not see it that way at all. Not one little bit.

So first of all, what is “crazy” anyway? The dictionary mentioned “insane” and “mentally deranged.” “Insane” is basically “not sane.” “Mentally deranged” is a little more interesting. It sounds really ominous (at least, it does to me), but then when I do to “deranged” it simply means “disordered, disarranged.” So crazy means being, in some way, not sane, or having some sort of mental disorder.

Now, “crazy” is definitely a word with some baggage on it (and by “some” I mean “a whole lot”). So I get that some people think they are being nice by trying to say that I’m not crazy, but actually they are totally invalidating me. See, I, along with a number of others dealing with mental health issues, want to reclaim this word. Crazy is a thing I get to call myself.

As for why… well, let’s look at depression. Depression lies. It lies really loudly. It lies with all the wit and intelligence you have, and will turn your own brain against you. My depression tells me that I’m worthless, that I’m horrible, that everyone hates me, that everything I do is pointless, that I’m a failure, and on and on and on. When I am seeing the world and myself through said depression, I am not seeing an accurate representation of reality. I am instead seeing the lies that depression is telling me. When my connection to reality gets damaged like that, I am crazy – I am not sane.

Now, I did once ask for an explanation of why we can’t be crazy if we know we’re crazy. The answer was “well if you know you’re crazy, you’ll stop.” This is just… I think it’s a really common thing people believe about mental illness, but that’s really not the way it works. REALLY REALLY REALLY. Changing a behavior, even if it’s really really obvious that the behavior is a problem, is actually incredibly hard. It’s why there’s a special branch of therapy all about changing behaviors. Changing thoughts is even more difficult. It takes work and focus and dedication to make even small changes to disordered thinking.

It is entirely possible for me to know that I am depressed and know that I am not seeing the world as it really is. That knowledge does not magically make the depression go away, nor does it magically make me see the world the way it really is. The knowledge does not fix mental illness anymore than knowledge that one’s leg is broken fixes the leg. All it does is let you know what you need help with. Once you know your leg is broken, you can go to a hospital, get it set and put in a cast, and then heal over time. If you don’t, your leg will certainly heal wrong, and if you don’t take good care of yourself during the healing process, that will also cause you problems. And with the broken leg being all out there, obviously broken, there’s a high probability that friends or family will help you if you need it.

Mental illness similarly needs help. You can’t just say “oh, I’m going to be better now” and have it happen. You need to see a professional. You need to get treatment. You need to take care of yourself. The fact that the problem is contained within your skull absolutely does not change this! If anything, help is even harder to get. People will tell you that you should be able to just get better on your own. People will calls medications a “crutch” (as though a crutch is a bad thing. aren’t crutches good when we have a broken leg?). Depression will tell you that you aren’t worth helping. Mania will tell you that you don’t need help. Anxiety will tell you that help is too scary. And seriously, when the lies are coming from inside your own head, they are really hard to ignore.

So basically – yes, you can know you’re crazy and have it be true. The basic knowledge that something is wrong does not suddenly make it better. So people, please stop saying this. It’s not really helping.

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Cure Femaleness Now!

A childhood picture of me – a child with femaleness. What a tragedy.

{A note on tone before we get started. This is a very sarcastic post, intended to show some of the problems of how some people talk about autism}

There is a terrible epidemic happening across the globe! An affliction known as femaleness affects approximately 49.6% of the total world population! Many people may not know just how terrible femaleness is, which is why I am here to tell you all about it.

  • People with femaleness are twice as likely to develop depression as normal people. An astonishing 1 in 5 people with femaleness experience depression at some point in their lives!  (citation)
  • While both normal people and people with femaleness experience anxiety, anxiety is both more prevalent among people with femaleness, and is more disabling for people with femaleness than for normal people. (citation)
  • About 1 in 8 people with femaleness will develop breast cancer in their lifetime. For normal people, the rate is only about 1 in 1,000.
  • At least 78% of all those with an autoimmune disorder are people with femaleness. (citation)
  • When it comes to Type 1 diabetes, people with femaleness are 40% more likely to die of it than normal people. (citation)
  • 1 in every 6 people with femaleness experience sexual assault, compared to only 1 in 33 for normal people. (citation)
  • On average, people with femaleness are paid only 78% of what normal people are paid. (citation)

The statistics are clear. Being burdened with femaleness is a terrible thing that no one should have to live with. Clearly the best solution to all of these problems is to eradicate femaleness! Please donate all of your moneys to me so I can find a cure for the scourge of femaleness.

Now to take a more serious turn, I rather hope the absurdity of this post was entirely obvious. Every point in that list is true, complete with citations if you want to look them up. They are very real problems faced by women (or those who people perceive as women) in our society. However, the list conveniently ignores any condition that is less prevalent among women than men. It ignores any benefit to society we get from having women around. The overall implication was to blame and demonize gender for gender disparities, even though that is absurd. It is far better to change society when the problems are social, and to simply address the various medical cases as they are rather than try to “cure” them via getting rid of one gender. And not only is it absurd, it is horrible. It is a terrible, awful thing to blame a person’s gender – something that is intrinsic to who they are – for possible associated problems. If a woman is experiencing menstrual cramps and is doubled over in pain, it would be absolutely horrible to simply say “oh, she’s female. women just do that sometimes” and then seek to “correct” the behavior and get her to stand up straight without addressing the underlying issue of pain.

So why do people do this all the time when it comes to autism?

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I am so sick of this

Image is of a woman prying herself out of a wheelchair in order to reach top-shelf alcohol. Text reads: “Alcohol / Makes miracles happen”

I am really struggling to find my words on this one, but I am going to try. This meme. This HORRIBLE meme. It’s hardly new, but it just keeps popping back up, again and again. I am inclined to think that there are *many* layers of awful in this, but let’s start with the obvious one. That people assume she’s faking.

*sigh*

The fact of the matter is, there are people out there who still have some use of their legs, but still need wheelchairs. It’s a thing. Yet so many people out there are either unaware of this, or just refuse to believe it.

This is an example of people policing disabled people. We have to be disabled “enough” in order to “count.” Apparently the only options are able-bodied, or para- or quadriplegic. This erases the existence of people who have partial paralysis, or MS, or degenerative diseases, or any number of other things that will severely limit a person’s mobility but still leave limited use of limbs. There are many people out there who outright need wheelchairs, but can stand for short periods of time.

Yet when looking at this picture, it seems that people just see a “faker” because, of course, that is the only option for a person standing from a wheelchair. (tone note: that was intended as sarcasm)

Only when I look at this picture, I do not see a person who is standing easily. I see a person who is standing awkwardly. Who is holding themself up with the assistance of a shelf. They do not look like they are faking it to me, so why do we have to go there?

And then, of course, there is the alcohol part. I strongly suspect that people see this, and even if they recognize that the person can probably only stand with difficulty and for short periods of time, there is judgement that the person is standing for alcohol. As though alcohol is a luxury that only able-bodied people get to have. That disabled people should stick with what we can reach. Or possible, that disabled people are supposed to be helpless. How dare someone work to get what they want, and how dare that work go towards alcohol? (more sarcasm)

And really, there are SO MANY ways that able-bodied people police disability. The comments people make when they see someone walking from their car in a disabled spot is one of them. I mean, I’m sure they think they are standing up for disability, by calling them out when able-bodied people use those spots. And yeah, there are assholes who use those spots inappropriately. However, that random person out there who yells at the person who parked there *cannot tell* if the person is disabled or not.

I’m serious. No one can. We can’t tell if the person has some form of condition that allows them to walk, but only for very short distances. We can’t tell if they have an artificial limb under their pants. We can’t tell if they have rheumatoid arthritis or fibromyalgia or any other painful condition that makes walking agony. Yet when people yell at a person who perhaps looks fine on the surface, they are assuming they can tell. They are saying that only the visibly disabled get to have accommodations, and those who have invisible disabilities can stuff it.

And they are saying that the only ok way to be disabled is to be entirely helpless.

We need to stop it.

Right the fuck now.

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Autism Awareness

So there is a lot of talk about how we need to go beyond autism awareness and into autism acceptance and autism respect. I TOTALLY AGREE with all that. So much. Acceptance is super important.

But then I see people spreading all sorts of misinformation and I realized that being aware that there is a thing called autism does not mean being aware of what autism actually is. I see parents talking about their difficult experiences with their autistic children, and then they cite a bunch of things that are not autism. So here is my quick, messy, off-the-cuff post for autism awareness, talking about what autism is and isn’t.

Autism IS a developmental disability. It involves all sorts of things that are difficult and challenging. When I speak of autism acceptance, I want people to accept that we need help and accommodations, and I want people to work towards helping us. Autism is primarily defined by social difficulty – that is the common factor. It can also include clumsiness, developmental delays, executive dysfunction, and other things.

That said, there are many things that autism is NOT. Autism IS NOT anxiety. Autism IS NOT depression. Autism IS NOT epilepsy. When autistic people are abused, it is the fault of the abuser, not the autism. When autistic people are bullied, it is the fault of the bully, not the autism. Yet somehow, over and over and over again, people talk about these Not Autism things when they are trying to explain why autism is bad.

So just to be totally clear, STOP BLAMING AUTISM FOR TOTALLY SEPARATE THINGS.

Now, to look at this more personally, I am autistic. I have fairly serious depression and anxiety. It is true that depression and anxiety often have a higher incidence rate among autistic people. Of course, they also have a higher incidence rate among people who are female, which I also am. It would be utterly and completely absurd to blame “femaleness” for depression and anxiety, or seek a cure for “femaleness” because things like depression, anxiety, abuse, sexual assault, etc all have a higher incident rate among said female persons. Yet somehow, so many people do exactly that when it’s autism. Then they wonder why we say they are demonizing autism. Just to be clear, it’s because they are blaming autism for things that are not autism, and are not the fault of autism.

Finally, I have seen people say we are terrible for trying to focus on the strength of autism. On things like ability to focus, ability to take in large quantities of information and process that information over time, ability to identify patterns, high memory recall, ability to notice details, etc. Yet people try to silence us for speaking of that, insisting the conversation focus only on how broken we are. THEN, of course, they will go on to talk about how we have a low employment rate.

Which is true, we do. Except it seems to me that getting word out that we have strengths and convincing employers that autistic people are worth hiring is a great way to address the employment problem. As such, I can see no sense whatsoever in all these attempts to silence conversation about our strengths. Unless, of course, your goal is to shame autism, spread misinformation about autism, and generally talk about autism as some terrible, horrible thing. Usually bringing up all those things that are Not Autism in the process.

So yeah, let’s have a little more autism awareness. Including awareness of what it is NOT, and awareness of what we can contribute when our difficulties are accommodated.

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Inspiration Porn

(a note on the tone of this post: it is intended to be entirely sarcastic, showing both the nature and some of the problems of inspiration porn in a humorous fashion)

 

Are you an able-bodied, neurotypical person? Do you like to watch videos of disabled people doing a thing in order to feel “inspired”? Have you ever wished you could make your own video so other people could feel inspired? Well look no further! Here is a step-by-step guide to making your own inspiration porn.

1. First, you will need to find a disabled person. Perhaps you have an autistic family member, or you know someone at school who has down’s syndrome, or you have a coworker who is paraplegic. Really, pretty much any disability will do.

2. Take your camera or camcorder, and record the disabled person having a personal moment of triumph. Now, inspiration porn is best if you make it out of a genuine triumphant moment, but it does not actually need to be. It can even be as simple as your paraplegic coworker moving from their wheelchair to a desk chair, or an autistic child petting a cat and smiling.

3. Now you are ready to take that moment of triumph (or everyday, ordinary activity), and create inspiration porn out of it. Start by adding some sappy inspirational music.

4. Add words.

This step is the most important. So much of inspiration porn is how you talk about is. A dramatic voiceover is, by far, the best. However, a paragraph description or even a carefully worded title will work as well.

First, establish that being disabled makes a person “broken” in some way. You must provoke pity in your viewers and convince them that the disabled person’s life was barely worth living until this moment. Bonus points if you use the word “tragic” to describe the person, or even better, to describe their entire existence.

Then, have a rising crescendo of their personal triumph (or everyday, ordinary activity). It must be conveyed as nearly miraculous and definitely life-changing. The viewer must feel amazed that it ever happened. Go ahead and imply, or even outright state, that it would only be reasonable for the viewers to assume that the disabled person is incapable of doing the things that non-disabled people do.

And there you go! Put it up on youtube and sit back and relax. Now you, too, have removed the humanity of a disabled person, taking their personal moment of triumph (or everyday, ordinary activity) and turning it into packaged up, condescending claptrap that exists only so that non-disabled people can have feels about it. As we all know, a disabled person’s triumphs are never really about them – the triumphs are actually about how the rest of us can feel about them.

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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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What am I?

So a while back I posted about self awareness and autism and how so many NTs seem to conflate social awareness with self awareness. Ya’ll seem to do it without even realizing it, acting surprised when people say “no, that’s not how it is, I don’t need social awareness to be self aware.”

I was thinking a bit where that might come from, and what’s involved in that. Ok, in that post I had said:

“mistaking what other people think of you for who you are”

Ok, so that’s a thing. Who you are and what other people say you are can, in all reality, be difficult to separate. When everyone around you says you’re a duck, it makes sense to take a look at yourself to see if maybe you are, in fact, a duck.

And I think many NTs don’t really question this all that hard. But I also think that NTs don’t actually run into a huge number of instances where large numbers of people around them insist that they are something that they are not. Off the top of my head I can see it for trans* issues, which certainly is a big deal, but that’s about it.

But when you are autistic, you have to do this all the time. For everything. With everyone. Because people will judge based on what they can see, and if they can’t see something in a way they can recognize, they will declare it not there.

So the non-verbal child who cannot communicate in a method that most people can recognize is declared to have a low IQ, to not know their own name, to not be self aware, to not be aware of their surroundings. We don’t know what’s going on in that child’s head, the thoughts that might be in there but not coming out in a way we can easily recognize. Can you imagine BEING that child? Everyone around you says that you don’t know who you are, that you can’t add or count or think or feel. That you don’t know what anyone is saying, because you don’t talk or respond to words the way they think you should. EVERYONE says this. Everyone believes it. Even the people who are supposedly on your side, supporting you.

And then there’s you. All alone. Bombarded with messages of who and what you are that are quite possibly entirely incorrect. How do you maintain your sense of self? How do you keep that from destroying you?

Well hopefully, you learn to disconnect what other people think of you from who and what you actually are. You forge a sense of self that is separate and distinct from the thoughts and beliefs of other people.

Because you have to, if you want to actually have you own identity and eventually grow into an adult who *can* show things in ways people can see.

And if you’re really lucky, maybe eventually people will see you as you are, rather than as you seem. But only those who are close to you, only those who get to know you, only those who learn that what they think they see may not be what actually is.

So yeah. I think we need to keep social awareness separate from self awareness. But I also think we need to get better at realizing that things aren’t always what they seem, that just because we can’t easily see something that doesn’t mean it isn’t there.

Because when we don’t do that, we can do some serious damage.

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This is not support

There’s a lot of noise being made about Autism Speaks right now, and as usual I’m a little late to the party. I don’t follow them closely so I tend to get my information second hand, and it takes me a while for my thoughts to reach a point where I can put them into words. Especially when it’s about a thing that is provoking a strong emotional response.

Like this thing here.

This. Is. Awful. It’s fear-mongering. It’s really hurtful to autistic people (many of whom have already spoken on the matter).

Are there people and families out there like the ones they are describing? Yes, of course there are.

Do they need help? Yes, very much so.

Do I think we need to do more? Definitely.

Is that the only face of autism? Gods, no.

Is it fair or accurate to take this one segment of an incredibly broad and diverse group and claim “This is autism”? Not even a tiny little bit.

Comparing us to people going missing or falling gravely ill is fear mongering. It’s mean. It hurts.

Saying that we make our parents ill is awful.

And these children they are talking about – many of them will read those words and believe them. They will read that they are missing or gravely ill, that they make their parents ill, that they are a burden.* Is this the message we want to send? Does Autism Speaks even understand, or care, about what they are doing? About the message they are sending and the people who will receive it? This is discrimination, demonization, oppression, and it is coming from the very people who would presume to speak for us.

They’re going to DC to talk about autism, and last I heard have yet to invite a single autistic person to speak. They claim to speak for autism, but how can they do that when there is not a single autistic person in their organization? As a general rule, organizations get to speak for a group only when they are comprised entirely (or almost entirely) of the people in that group. It should be shocking to think of an advocacy group made up of a bunch of people not in the group, yet there are huge numbers of people that support Autism Speaks.

Now, once upon a time a bunch of people complained, loudly, at this lack of autistic representation. Autism Speaks did eventually respond by taking on one, and only one, autistic person and sticking him in a committee. Yeah, a committee. The token autistic. They then proceeded to ignore him. Yesterday Mr. Robison resigned in disgust, finally realizing that despite the fact that their tagline is “it’s time to listen” they, themselves, do not listen. They have had years and years to learn to listen, and have, with their most recent “call to action” proven that they have not changed a bit.

Their history of fear mongering and demonization continues into the present and it IS NOT OK.

I support helping people on the autism spectrum. I support therapies and assistance and providing us tools to be able to learn and communicate and become independent – whatever that means for any given individual.

I do not support Autism Speaks, and I feel the need to say that publicly. What they are doing is not ok. They need to stop. They need to listen. They need to learn.

Sadly, at this point I doubt they ever will.

*When a child walks up to their mother and says “Mom, do I make you ill?” because of what a “support” group said, something is seriously wrong.

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Ice Breakers: An Open Letter

creative commons image by williamarthur on flickr

Dear World at Large,

We’ve been slowly getting on a little better over the past few years. I’m learning to navigate your tricky social world and you’ve been learning that I can be pretty cool sometimes.

Sometimes, though, we just don’t seem to get along. I do really try to live by your rules and your standards of how people are supposed to be, but sometimes I really need you to take a few steps towards me. This is one of those areas.

Stop asking people about their job as an ice breaker!

Seriously. I am not very good at making conversation with strangers in the first place, but this ice breaker really does not help. Not everyone works, not everyone has a job that they are happy with, and not everyone has a job that they can talk about. I know you want to think that it’s good enough since it works for most people, but it can be seriously alienating for those of use for whom it does not work. It is also an area with a lot of social baggage stuck onto it, and it can be expletive difficult to avoid feeling shame if you happen to be one of those people who does not have a job.

Sometimes people ask what sounds like a more general, “what do you do?” type of question. I would like this if it were actually general. Then people could answer with their job, or with their hobbies, or with their advocacy, or whatever else they could talk about in terms of how they spend their time. Sounds great, right? Except that I have learned that when people do this, they are not actually meaning it as generally as it sounds. They are still asking about a job.

Story time! Once, I was chatting with a stranger and she asked me the “what do you do?” ice breaker question. I chose to answer in terms of one of my hobbies, so I said that I crochet. The rest of the conversation went about as follows:

Her: Oh, you crochet for money?

Me: No, it’s a hobby.

Her: But what do you do for money?

Me: Nothing.

Her: But how do you get by? What do you do?

Me: I’m a hobo.

Eventually a friend of mine stepped in and said that I am “between jobs” and the interrogation ended. However, this should never have happened in the first place. If I choose to answer what I “do” with a hobby, please just go with it. Why is it so important to pursue the job question, even when I have clearly chosen to not answer? What is so important about knowing how I do or do not make money?

A similar thing happened another time when I was chatting with a stranger. The usual “what do you do?” question came up. This time I was blunt and simply said that I do not have a job. I was then subjected to yet another interrogation regarding why I don’t work, and am I looking, and how hard am I looking, and how long has this been going on and honestly, why is that necessary?

This is one of the reasons why I rather dread talking to strangers. The pervasiveness of this question is rather frustrating for me. I already find it difficult to talk to people I don’t know, and I already find it difficult to cope with my jobless status. Combining the two into one horrible interaction just comes across as unfriendly.

I don’t think I’m asking something terribly difficult. It can still be a job question for all those people who want it to be a job question. Just please let it be a hobby/other things I do with my time question for the people who need it to be. If I choose not to answer in terms of a job, please just go with it. Be ok with it. It can still be an ice breaker if two strangers find themselves talking to each other for whatever reason. In fact, it will be a better ice breaker, because it will no longer be excluding people who are disabled and don’t want to talk about their medical status, or otherwise don’t have a job and don’t want to be interrogated about it. It’s not friendly, it’s not nice, please stop.

Thanks

me

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