Stored Phrases Should be Banned from Communciations Devices!

Okay, maybe not banned, but close to it. Let me explain.

When most people think of communication devices, they think (today) of iPads and iPhones with communication software.  When they think of that software, they think of two things: First, it needs to speak with a computerized voice. Second, it needs to use cartoon pictures that represent words, or, worse, phrases.

All of this is wrong. One of my preferred forms of AAC is a pencil and paper – it’s cheap, it’s hard to break, not a theft target, with it I can say literally anything I want to say, it allows me privacy, and it works nearly anywhere. Pretty much the current crop of iPad software fails in at least some of this.

I’ve written before about the problems with high tech AAC – but I also recognize there are good things about it (and thus I use it too).  Too often high-tech is used when low-tech is better. For example, at an airport, pencil and paper works wonderfully, while iPads fail for many reasons. Airports are often bright, which makes iPads hard to use sometimes (not always though – sometimes they work fine in the light level). Airports are very loud, so the voice is next to impossible to hear coming from tiny iPad speakers (and the external speakers have extra problems). This means people need to read the screen, which often means handing a $500 device to a total stranger. I can take a paper note with me through the metal detector, but can’t take the iPad with me. Oh, the batteries don’t die either with pencil and paper, and if something goes wrong, replacement parts are available pretty much anywhere for pencil and paper (anyone depending on an iPad needs an iPad in reserve at every location they frequent (school, work, home) – sadly this isn’t something any funding agency understands).

But that’s the problem with the technology. The other problem is the language system used. There are good picture-based language systems (such as Minspeak), and there are also good non-picture-based language systems (such as English!).  What these systems have in common is that they aren’t just stored words, they are an actual system. And the system isn’t just picking and organizing a bunch of words (“core vocabulary”), but thinking through things like conjugation and subtle variations in meaning (“I am going to the store”, “I went to the store”, “I will go to to the store”, “I am in the process of going to the store”, “I’ve gone to the store”, “I am at the store”). These should basically be the same button presses, maybe with one variation in the sequence, if a picture-based system is used. Usually, they aren’t. If you’re using pictures because someone lacks English literacy, you need your pictures to do this. You need a picture language, not just a bunch of pictures with 1-to-1 associations with words.

More concerning to me is stored phrases. I don’t think most adults with language literacy (picture language or standard language literacy) need more than maybe 5 or 6 phrases. Here’s what I use:

  • Yes
  • No
  • I don’t speak but I can hear and understand fine.
  • I use this to talk
  • Thank you

Basically, I have the things I need to answer *very* quickly and I say *a lot* in there.  I don’t have things like, “My name is” or “I like to eat tomatoes” or any such nonsense like that.  I don’t get asked my name hundreds of times a day. I do answer yes/no questions a lot, and I need to explain that I don’t speak but am not deaf a lot. I also get questions about what I’m doing (“I use this to talk”). If I want a food dish with tomatoes, I can take a few seconds to spell that out. I’ve thought about adding a 6th, but haven’t gotten around to it yet: “I don’t understand sign language.” When I visited Montreal, I found, “Do you speak English?” to be useful, but in my normal travels, it’s not particularly useful.

The reality is that most of the things I say can’t be predicted in advance. Sure, I can try scripting them, but one of the reasons scripting sucks for teaching social skills is that people are a lot more dynamic than that. You can’t make the other person follow your script! If you could, stored phrases would be awesome. But they aren’t.

If you have language, do the following experiment to see what I mean. Pick a day to try to use note cards to communicate. Before you go out, write down everything you might need to say. Then try to use them to go about your routine.  Feel free to add cards as needed (take a pencil with you).  Put a tick mark on every card when you use it.  Then, at the end of the day, count up the tick marks and divide by the number of cards – this tells you how often you use a given phrase. First, I bet you will be surprised by how many cards you need to make. But second, you’ll be even more surprised how little you say certain things you thought you say a lot.

Then, the next day, do the same exercise, but take a note pad and pencil instead of note cards. I bet you find this more convenient.

So why the focus on stored phrases? It’s two-fold. First, most people who historically used communication devices could not speak because of motor control issues (for instance, Cerebral Palsy). That’s who governments would buy expensive devices for. The biggest complaint then (and still to an extent now, even among people with relatively standard motor abilities) is the slow speed of communicating using a keyboard or touch screen or scanning interface (particularly for a scanning interface). If you can only get one word out every minute, you try to maximize your throughput – and so do the people who are waiting for you to finish your thought (often for selfish reasons). So stored phrases seem like a quick win! That’s where real language systems come into play – how do you give someone flexibility in communication at the same time you give them speed? You don’t use stored phrases. I will also get to a second point in a minute (talk about speed of communication…) – about how this doesn’t apply in the same way to many autistic people using communication devices that are properly specified for them.

Second, people think stored phrases are easier for people developing language. In some cases, that is true – but primarily as a language motivator. If you have a funny joke or useful phrase programmed into your device, and it comes out as language, you see the beauty and significance of language. It can be very useful in those situations, particularly with beginning language users.

But, for people who already have language, I’m sick of the focus on stored phrases and icons. We need to focus on the actual problem: slow communication speed. And that means an actual evaluation of the person’s abilities, not trying to find the fastest way they can use whatever the sexy technology of the day is (iPad / iPhone). For me, that’s a keyboard – I can type 100+ words per minute on a good quality clicky keyboard (the click is important – I need the auditory feedback and rhythm – most keyboards suck for that today, because they’ve gone to great lengths to become quiet!).  For a lot of my fellow autistic people, I suspect they could type quickly too. Clearly not everyone can – and for people that can’t, appropriate input systems need to be considered. That means I don’t do great with an iPad! That’s okay (laptops are good and cheap these days).

But with typing being a potentially 100+ WPM input method, it needs to be considered more often. Studies show that at these speeds, word prediction, word completion, and stored phrases actually slow down the input – it’s quicker to just type the word than to cognitively process it, particularly in the badly designed systems that vary the placement of words in selection lists over time based on how you use them (thus preventing you from developing a muscle memory for the word). A good system, even if it isn’t used by a 100+ WPM typist, develops muscle memory. Even for slow input speeds.

In addition, the act of trying to scan a page to locate a word among a bunch of pictures or a completion list interrupts the communication process if I already know the word I want to use! And, for me, the biggest problem with speaking is that my own words interrupt my thought process. So I want to minimize interruptions, not add to them (“Okay, I want to say ‘store’, but I have to now find where the word is, and once I find it, I have to remember what came next”). That’s where muscle memory comes in – whether it is a picture-based system or spelling system. But typically stored phrase/word systems pay little attention to muscle memory (hint: if the layout is completely different for the person on their device at age 30 than it was at age 3, it’s probably not developing muscle memory). Anything that involves searching to find a word is a problem in this regard.

That said, I’m not the same as other people. My problem is that I need to say what I’m saying without internal or external interruptions (something very little literature discusses). Other people might have, for instance, word finding problems without working memory problems – for those people, I can see a well organized vocabulary, in a language system, as very helpful. But it still needs to be a language system, not just a list of words or a group of cartoon icons associated with words and phrases.

Finally, my biggest problem with most systems that don’t have complete vocabularies or which rely on stored phrases is that it becomes very difficult to tell other people about abuse or personal issues. How do you tell your girlfriend what you like in bed? Or how do you ask a doctor about birth control? Or tell a dirty joke? Or how do you say, “My mother (or speech therapist) is sexually abusing me?” when that person has access to your device too? You probably don’t want stored phrases available to everyone for these. There are some solutions to these – I believe any system that uses stored phrases needs to be user programmable, and there needs to be the capability to set up locked pages that nobody but the user can access (for instance, protected with a timed password). I’ve written software that does that and I’ve made sure to donate those ideas to the public domain – they are prior art and any vendor can implement them without concern over patents or copyrights. By allowing users programming access, you encourage experimentation with language and the communication of novel thought. That’s a good thing. What I hear from speech language pathologists (SLPs) is, “But the kid might screw up the programming.” Yep. That’s why you have a backup, and a good system lets you restore pages independently of each other and merge backups and the device’s changes selectively.

In closing, I don’t mean to say if you use stored phrases and they work for you that it is a bad thing. But I do think they are often used without a complete understanding of communication – since you understand how you communicate, feel free to use them when appropriate!

The Problem With Social Security

Note – this is US-centric by nature of discussing the US Social Security system..

I’m not going to say much here and I’m going to try to keep this accessible to people who aren’t finance experts (since I’m not either!), but I bet I know how to fix social security taxes – and it doesn’t have to deal with corporate tax return (the number of corporations paying basically no tax is alarming) or creating a means test for benefits.  As an aside, did you know that your family can make millions a year and you can still collect SSDI, the type of income someone who has worked “enough” receives if they become disabled? The same goes for social security retirement. You can! But you can’t own pretty much anything and collect SSI, which is what most long-term disabled people receive.  SSI is means tested, after all, while retirement and SSDI are not.

So you can be a millionare and collect SSDI or social security retirement, but if you have $2,000 in the bank account (less than 3 months “safety cushion” for someone making the typical $721  SSI payment). It should be noted that Vangaurd, in line with most financial planning companies, and a place that doesn’t probably have many clients on SSI, recommends a 3 to 6 month emergency fund: “In a nutshell, you should have at least 3 to 6 months’ worth of expenses—but the exact amount depends on a few variables.” I’m going to guess most of that $721 goes towards expenses for a typical SSI recipient (or tries to – one bad thing happening can easily cost more than an entire social security check, which is why people on low income need an emergency fund even more, because late fees and such end up making the amount owed even bigger!). So that means an SSI recipient should have between $2,163 and $4,326 in a rainy day fund – but of course they would be committing social security fraud if they did (nevermind the impossibility of saving on $721/month). If you’ve ever had a root canal (not covered by medicare typically!) and paid typical prices, you know what the problem here is.  But I digress…

Heck, to fix social security, we don’t even need to trim the military to the spending level of the next, say, 5 largest militaries (today we spend more than the next 8 largest militaries combined!)

No, it’s simpler.  Two minor tweaks to the law that would affect very few people.

First, get rid of the $118,500 (it goes up each year, just slightly) earned income cap on social security taxes. If you make $118,500 in earned income, you pay $7,254.00 in social security taxes.  That is 6.2%.  Your employer matches that.  If you have a part-time job you are raising a family of four on, as a single parent, and you make minimum wage for 30 hours a week ($7.25/hour, or $217.50 for your 30 hour week), you make $11,310 per year, and you pay $701.22 in social security tax.  That’s 6.2%.

But if you make $10,000,000/year in earned income, you pay $7,254.00 in taxes.  So you make 884 times the income of our 30-hour-a-week minimum wage earner (in other words, they seemingly would have to work 884 years to make what you make in one year), but only pay a bit more than 10 times the social security tax.  Their tax rate (remember, the minimum wage worker is taxed 6.2% on social security) is 0.07%.  With the vast majority of wealth in the nation owned by a very small group of people – who pay pretty much nothing in social security tax – after all, they have a lot of uses for that 6.2% – it is no surprise that there are predictions of the social security trust funds running out of money.

But it is worse than it sounds. I kept using a term, earned income, above.  Is there another kind? Of course. Among many types, it includes money made from betting on the stock market (this is one thing called “capital gains”). That’s not considered earned income, but it is income. So you do pay taxes on it. But one tax you don’t pay on it is social security tax.  That’s right, if instead of working to make the $10,000,000/year, our millionaire instead made money investing, he pays $0 in social security tax.  Yep, 0%.

So there you have it – the real story of why the social security system is flawed. The poorer you are, the more of your working income goes to social security – and if you are lucky enough to make enough money to live comfortable off of investment income, you don’t pay a cent.

As an aside, this isn’t a new concept. But it isn’t popular. One of the less-well-known Obama-care changes was that people making over $200,000 earned income (for individuals) have to pay a slightly higher tax rate to medicare than the minimum wage worker. So I guess that’s progress. But it also helped significantly to start to make medicare a sustainable program. Minimum wage workers (indeed, anyone with less than the $200,000 limit for individuals of earned income) pay 1.45% of their income to Medicare. High wage workers pay an extra .9% on any earned income above $200,000.  So for every $100,000 extra they make over $200,000, they pay $900 more in tax than before Obama-care. They still pay nothing for Medicare on income that isn’t earned (capital gains).

Social Justice Jargon

I am amazed at the degree of linguistic inaccessibility in social justice spaces. Someone who isn’t already deeply involved not only in social justice, but the exact sub-culture of a particular blog or forum will have no way to meaningfully understand what is being said in many of these spaces. I guess that’s okay if we just want to talk to each other, but if the ignorant (that is, doesn’t know any better rather than chooses to act in a bad way) person in your life won’t understand your word choice or jargon, your words aren’t doing much outside of the group of people that share your language.

And most people don’t share your language.

Some examples of words or phrases I’m talking about:

  • Because reasons
  • AMAB
  • allistic
  • kyriarchy

Don’t know all of them? “Because reasons” is shorthand for “There are reasons for this, good or bad, but I don’t want to discuss them because whatever they are they aren’t relevant to this topic.”  I think. It seems to be used different ways by different people. A good alternative would be to actually say what you mean, like “I have reasons for this, but I don’t want to get into them here because I don’t believe they are relevant” or “She claims to have reasons, but I don’t know if they are bullshit or not” depending on how you use this.

AMAB? Assigned male at birth. I’m still not sure why this is as used as it is in social justice spaces, and I could write about some problems with it’s common uses – it can be really ugly (and not too far off from Janice Raymond, although I suspect most of the people using this term have never heard of Janice and her idea of privileged transwomen infiltrating and destroying women’s spaces because they grew up as men).

Allistic? This means non-autistic. Everyone understands what non-autistic means. A handful of people on the internet understands what allistic means.

Kyriarchy? This talks about all systems that are dominated/controlled by a group of people and where another group of people has a disadvantage. But few know that.

Of course part of the problem with this is that I probably exposed my misunderstanding of these words – definitions are hard, and understanding is hard. That’s the second problem: besides for these words not being known, they serve as a way of hiding misunderstanding.

I remember the first time that I, an evangelical (albeit non-traditional) Christian, had a discussion with Mormon missionaries. It became very clear quickly that we had many different ideas on some core beliefs regarding things like the trinity, resurrection, redemption, and heaven.Yet, we used the same words, just different definitions. So I could ask, “Do you believe in the trinity?” and the missionary would say, “Yes.” Yet we didn’t believe the same thing when we actually try to define what each of us believes – and the definition is very important to both my faith and the Mormon missionary’s faith. We could spend hours talking to each other, using this jargon, and never realize what we did and didn’t agree about, unless we defined our terms.

It’s kind of like someone saying, “I’m not racist.” Their definition of racist may or may not be as inclusive as someone else’s definition. They may say, “I’m not racist” and then say “But blacks just aren’t as intelligent as whites.” Their definition of racism would differ greatly from mine, which holds that blacks and whites have the same range of intelligence, and that not accepting this is one element of a racist.

But the biggest problem, in my eyes, is that this jargon turns social justice groups/blogs/spaces/forums into places that are hard for decent people to become part of, unless they are already in the group. It’s a form of exclusion and determining who belongs. Back to my evangelical vs. Mormon experiences, there are words and phrases that each group uses that reflect our culture and are not shared. I can spot, in less than 5 minutes, if someone goes to an evangelical church frequently. I’m sure the Mormons can do the same. A lot of how I can tell is based on language usage and how they use precise words that don’t necessarily get perceived the same way outside of the church community.

In fact, this cultural unawareness of Christians is a reason why many criticisms of Christians are ignored by Christians – the people criticizing don’t understand the language and thus assume it means something it doesn’t. A great example is when a Catholic official makes a public statement that says, “We need to welcome all people, including people with same-sex attraction, into our midst.” To a non-Catholic, that might sound like, “OH! Finally, the Catholics are going to let gays in!”  To a Catholic Bishop, it means, “How can we teach them they are wrong unless they come to our church? Of course we want them to come!” (key buzzwords: “welcome” doesn’t necessarily mean “we want these people in all parts of our church”; “same-sex attraction” means “We don’t recognize people are gay or lesbian, they just struggle with attraction to the same sex”)

So, this language can form a wall of separation between “us” and “them”. It’s not intended to do that (usually). But it becomes that.

There is another problem: linguistic accessibility. Yes, that’s an ironic use of jargon. Not everyone can access the right word that means exactly the shade of gray that a given piece of jargon means. Not everyone can remember all the jargon or wrap their heads around all these new terms. It’s nothing to do with intelligence, but rather simply with language ability. Some people are incredibly gifted and can adopt the jargon effortlessly and easily. Others cannot, but still have plenty of good things to contribute to you or learn from you.

So the next time you think you should use all this cool new language you learned, ask yourself, “Who am I talking to?” If you’re talking to other people who know these words and share your definitions, it’s absolutely appropriate. But if you think you might be talking to people who don’t understand your definitions, or if you want to include people that may not have the linguistic skills to decode the jargon (and in this aspect, it is an accessibility concern), think about at least defining your terms, or, better yet, trying to find a short, but obvious way of conveying the concept the jargon represents.

I’m certainly not an expert on how to do this – I too find myself using jargon or otherwise writing inaccessible text. And I’m missing out on valuable discussion because of it. Learning to communicately clearly is a process, and I’ve only started that process.

Why I Didn’t Drop Out of High School

I was watching a news program about an “early warning” system to detect kids who might be in danger of dropping out of high school. What shocked me is that they described much of my school experience – I fit those signs.

For instance, they talked about two key signs being poor academic performance (such as failing a core classes and abysmal GPAs – both of which fit me) and frequent absences (I was gone typically around two months of each school year).  So, on paper, I was in danger of dropping out. In reality, that probably wasn’t going to happen, however. And I think they missed some stuff, that schools can do better.

Conventional wisdom is that for students to do extra-curricular activities, they should have their core education under control. If you’re on your high school football team, you’re expected to get signatures from all your teachers that you have a certain grade average in the class.  Do too poorly in school, and no play for you. You don’t get the reward. This is a horrible practice!

It’s horrible for a few reasons, and thankfully they didn’t think of making someone doing, say, science fair projects (something I did well at and enjoyed) prove that they were passing classes.  My school sucked – I was being asked to exercise executive function I simply don’t have (and not through laziness or not being exposed to study skills instruction or any similar hogwash).  I wasn’t going to pass a non-modified high school curriculum in the 90s (fortunately, they did modify it somewhat for me to let me graduate).  In addition to the tremendous executive skills required (time management, studying, knowing what actually needed to be studied and what didn’t, homework, remembering books and other supplies, and whatever other things were needed), it was also a miserable environment. Who would enjoy a place where they are physically, emotionally, and sexually abused? Who would possibly do good in that environment?

So I had my joy in my extra curricular activities. If the school was more progressive, they would have recognized a college-level research paper probably proves I can write and that doing calculus-based statistics proves I can do math. But they didn’t. So I struggled with my classes. But I still got to do the things I loved about school. I wouldn’t have if they actually applied the standard they applied to the jocks, which concerns me: What if my love was football, not science? Would they have taken the one positive thing about school away from me? Where would I be today?

I’m sure the carrot of “You can do the thing you love if you work hard in your classes” works for some people, and can be powerful motivation. It is in my life. But it’s only powerful motivation when that thing is achievable. I had barriers I couldn’t overcome by willpower. It wasn’t motivation. It was that school environment I had was completely inappropriate to my educational needs. Without fixing that environment, no motivation could solve the problem. I needed to be in a place where I wasn’t abused and the things asked of me were things I could do.

I remember my PE classes in Junior High – one thing we were expected to do, and got a grade based on, was climbing a rope. I can’t climb a rope. I was lifting weights at the time, doing push ups, etc, during my spare time, trying to get strong enough to do something unrelated to school. But despite that, I couldn’t climb a rope. No matter how much I tried, I couldn’t do it. It’s not that I didn’t want to do it, or that I didn’t know how to do it, but simply that I can’t do that. Nothing changed that, even things that would normally be suggested (physical training).  I wasn’t overweight, and I was doing strength conditioning. Yet, I couldn’t do it. It wasn’t, “Joel doesn’t want to climb the rope.” It was “Joel can’t climb the rope.”  And you could give me a failing grade on rope climbing, but it wasn’t going to change anything. A lot of my academic classes were similar: I was being asked to do things in a way that I could not do, and then given bad grades for doing badly at those tasks. The ironic thing is that “those tasks” actually had little to do with the actual subject. I was getting bad grades not because I can’t write or do math, but because I couldn’t manage my time, figure out what is important and what isn’t, do my homework, and return the homework, all while being beat on, raped, and humiliated. Go figure.

So, somehow, I slipped through the cracks and got to do the things I loved without being forced to do the impossible. Why would we take away the one thing a kid loves about school (for instance, an extra curricular activity) to motivate the kid to do better in school? That makes no sense. Yet it’s conventional wisdom. To this day, I don’t know if this didn’t happen to me simply because God was looking out for me or because some teacher/administrator saw the problem and helped me, without my knowledge, subvert the oppressive system. Whichever it was, it was a miracle.

Fortunately, people thought I was smart, even though I was failing courses – I was lazy and unmotivated, but smart in their eyes. So I got some slack for being smart. And that helped me get through high school – occasionally some teacher would notice that I was capable of learning. These teachers made a huge difference. The ones I’m thinking of gave of their own time and energy, to give me things I enjoyed about school and to help me avoid the problems I was having. Every one of them broke the rules of the system – and I’m exceedingly thankful that they did. I think back to a computer teacher (I never took any of her classes!) who would write me a pass to get out of class if I needed to get out of class, so I could work on the school’s network – it was the start of what got me into my current field, where I’m part of a team that runs one of the largest networks on the planet. I loved doing that, and having a break from class sometimes let me recharge and focus on other classes in the day. It gave me a break (in addition to being the key to my success in my career). And I needed a break. In fact, the year I had this opportunity, to basically be allowed to skip any class I wanted (my senior year), I had better attendance than any other year, I passed all of my classes, and my GPA for the work I was doing was among the top in the school (my other 3 years of work was so bad that I still graduated in the bottom 25% of my class). It was also the same year that my mom realized what was going on and would write me an excuse to be absent from school if I wanted (she conditioned it on me passing classes). I think I only had my mom write two notes. I didn’t need a lot, and I didn’t want to fail. But I needed some help. Who would have thought letting a kid skip classes would help? That certainly doesn’t fit conventional wisdom. But paradoxically, it actually increased my attendance when I could choose to not attend when I wasn’t up to doing so, rather than having to wait for my body to give up and contract a significant illness.

But what if people didn’t see this? What if I wasn’t seen as lazy and unmotivated, but just “dumb?” What then? I worry about those kids. They need allies too. Or they will drop out. Just like I might have.

That said, my school wasn’t completely clueless. They let students who failed take classes in summer school. So I did, right before my senior year. And – imagine this – the format of summer school was “Go read the book, pass the test.” I could do this. I learned more world history in a week (that’s all it took for me to pass all the tests for World History) than I learned in the year of failing it in my freshman year. It was a learning style that suited me. I wouldn’t say it was easier (I don’t believe it was, despite the school obviously wanting to get people through these classes), but it was better suited for me. An added bonus of summer school? Those kids didn’t abuse me. Don’t ask me why they didn’t, I don’t know. But they didn’t.

Finally, a final piece in the puzzle, was the idea that I wanted to get out of my town. To do that, I was going to need to do college, so I had a reason to leave, and some support to do so. Leaving my home town was the best decision I ever made. It’s why I’m alive today. And that was a powerful motivator: stick through high school. My parents wouldn’t have supported me at all in doing this if I was doing it for a reason other than college. And to do college, I needed to finish high school.

There’s a common theme here: I could succeed when my disability was (unknowingly) accommodated and when I wasn’t being abused. Self-study and having the opportunity to have a break helped tremendously. And then having people that broke the rules helped, whether they did so intentionally or not. I had things to look forward to at school despite this. And that’s a pretty huge motivator when someone who is being abused at school can say there were things he looked forward to doing at school.

I think back to that and think, “Why couldn’t all my classes be self-study, with support when I need it? Why couldn’t I have a down day when I decided I need it? Why couldn’t I have a place where I wasn’t tortured and raped while being expected to learn?” I probably would have been an outstanding high school student if those things were different. That said, I do think I have some right to be proud that I made it. I never saw myself as a potential high school drop out, but even without that risk, I’m proud to have survived school. I know I’m strong and able to succeed. It could have been very different, and without just a few small things, I might not have had enough hope that my strength would have been sufficient – and I recognize that not everyone is as lucky as I was (and, despite being abused and placed in a horrible environment, luck and good fortune were a huge part of why I could survive), nor do I think someone who doesn’t make it is any less smart or motivated or strong. You can’t measure things that way.

But everyone in my situation – anyone who faces abuse, an inappropriate environment, illness, etc, even if there are some good things happening and there is some hope – it is something to be proud of when you accomplish it. And I hope that our education system is getting better, that we are making progress. Let’s not take motivation (such as extra-curricular activities) away from people to “motivate” them. Let’s not force people to learn in one set way, when that way is demonstrably inappropriate. And let’s find ways that we can give a break or hope to someone who needs it.

Stereotypes and Advocacy

I’m sick of many of us in advocacy simply stereotyping people who are not part of our particular movement. Stereotypes and assumptions prevent us from communicating. Too often, rather than listening to what someone who is not one of us says, we simply assume that they believe what other people with a certain trait believe.

Parents, professionals, and therapists deserve to be treated with respect. As all people do.

Sure, a lot of time the people doing horrible things to autistics are parents, professionals, and therapists. So they don’t get a free pass just because they had a kid or have a professional job.  But, at the same time, before we pronounce someone guilty, we probably should make sure they really are guilty – not with accusatory questions, but by sincerely listening.

We don’t want to be tone policed in advocacy circles. If I need to express something happening to my people that is harming them, I shouldn’t be silenced unless I can say things politely. I agree with this.

That said, if I can say them politely, I probably should. I should at least try a decent interaction with people, with an assumption that the person may be a potential ally, not an enemy, who simply doesn’t know any better, who is doing something a certain way for a reason that negates my concern, or simply doesn’t know any better – but agrees that autistic people (or whatever other group) need to be treated decently. If they prove themselves otherwise, fine, be an ass. But let’s wait until they prove it, rather than having us assume it. There may be nuance that I don’t know about unless I ask.

I’ve had this in my own advocacy. Sometimes I see something in the advocacy world that I don’t think is particularly effective advocacy – so I speak up and say so. I try to do so respectfully, sometimes I do, sometimes I fail. Like all of us. But more often then not, the response isn’t to read my words or listen to my thoughts, getting clarifications when something is unclear. No, it’s to read one thing and then dismiss everything I’m about to say, on the basis of what stereotypes about people who say that one thing think.

I’ve seen this in my arguments against the widespread usage of the word “cis-” to refer to people who are not trans (ex: cis-male is a person born with normal male genitals and treated as a boy/man throughout his life, and who identifies with that identity). The initial assumption is that my actions are formed by the same ignorance and arrogance that causes some to fight against the word – but my thoughts are quite a bit more nuanced than that. But it’s hard for me to express them, because the initial assumption is that I’m full of shit and saying this for the same reason they’ve seen others say this (and there is a lot of bullshit on the web about what is wrong with the cis- prefix, bullshit that is horrible and wrong and definitely anti-trans).

Yet, I make an argument like that, and people make assumptions, without really listening to what I want to say. And, often, these people are advocates for some cause. I probably agree with them far more than I disagree, but they immediately put me in the category of “hateful, anti-trans bigot”, assuming that I hold a bunch of other views (on things other than cis- prefixes) that I don’t hold, because I hold a view on the cis- prefix that is contrary to some of the louder advocacy right now (that said, I’m not the only person that holds this view for the reasons I hold it).

I’ve seen it in other areas of advocacy too. People are fine making assumptions about you if you don’t say exactly the right words, exactly the right way. I might say I don’t support food stamps, which is an accurate statement of my beliefs (for people outside the USA, food stamps aren’t stamps anymore, but are assistance given by the government that can only be used to buy food). Immediately, I can sense my readership getting angry, about to tell me a few pieces of their mind. Some people stopped reading and declared me a conservative asshole. Others assume that I must never have been without food, because if I had been, I could never say something like this. A lot of stereotypes.

Of course when I say I don’t support food stamps, I’m talking something else entirely. I agree with economists that food stamps are a wasteful, inefficient redistribution of income that doesn’t help the economy as much as it could, which doesn’t get people out of poverty, and which is inefficient for the person needing assistance. Oh, again, I’m in the conservative asshole category in the eyes of my readers! I also agree with the most progressive anti-poverty activists (who, ironically agree with the economists!) in that cash distribution is a much better way of helping poor people than earmarked funds are. Rather than giving a family $400 of food assistance, $600 of rent assistance, $350 of medical assistance, $200 of transportation assistance, why not give them the cash for these things? Maybe they can economically eat for less than $400 (I couldn’t if I had a family, but some people have resources I don’t have or abilities I lack). But to get that better job, they need $250 in transportation assistance. Why shouldn’t the people most connected with their needs make that decision? (hint on why people disagree with me: “What if they buy $1000 of lottery tickets?” And that’s a legitimate concern – what if someone runs out of money in the beginning of the month? We can’t let their kids starve. And I agree with that – I won’t get into details now, but there are solutions for that too that don’t involve kids starving; but that said, contrary to what most people seem think, most poor people aren’t poor because they are too stupid to spend their money on food and rent, but rather they are poor because they don’t have enough money – and will spend money they have wisely).  So my view isn’t “Cut support” but rather “Put people in charge of determining what they need, rather than us dictating.” This isn’t even a fringe view – most people who study this field (poverty) would agree with me, including people in government. But it is opposed from the right wing (“ABUSE!!! THINK OF THE ABUSE!!!”) and from other advocates who only read “get rid of food stamps” and immediately make some assumptions. So it probably will never happen.

When we listen to a parent speak, we need to be careful to not make any assumptions. Maybe the parent is an awful curebie who wants sympathy at any cost to their child’s privacy, so is fine posting exaggerated stories about shit smearing on their mommy blog. There certainly are plenty of parents in this category. But maybe they are talking about what they are talking about in a respectful, appropriate way that respects the child’s privacy.  Maybe the child is old enough to understand the implications of consent and has given it, but the mother didn’t know that she was going to be stereotyped as a “mother who wants sympathy” and thus needed to make it clear she didn’t fit the stereotype. But we should be listening, and asking non-accusatory questions, giving people not the benefit of the doubt, but simply recognizing “I don’t know here, but it’s important.”

Now, a good ally won’t be bothered by someone confronting them over a stereotype the self-advocate has about the group the ally is part of. Even if it’s done somewhat aggressively and rudely. They’ll recognize that a minority community has to put up with a lot of shit, and sometimes that is expressed in direct, up-front ways. They’ll see where the pain and anger is coming from. Or maybe the ally is wrong, and does need to be corrected, and is willing to be corrected (if they are an ally, they will listen; note that I don’t believe an ally to autistics has to agree with any one autistic on anything, either – and that’s where things get complicated and messy).

But at the same time, I think sometimes we get a bit too aggressive in our advocacy, seeing enemies that aren’t there. Advocacy is very nuanced much of the time, and not about just the big major things. It’s not just about whether JRC is giving electric shocks to their prisoners (they are, and, yes, it’s wrong). It’s about an assumption that “more intensive” treatment is the right answer for “more severe” behavior. And that “more intensive” treatment works better and quicker for all types of behavior than less intensive. It’s the assumption that the more effort put into therapy, the more positive results. It’s the assumption that behavior X and Y are maladjusted and need therapy. Sometimes they do, but sometimes that “behavior” is just odd but okay.

I’ve also seen the reverse – I’ve seen it assumed that an autistic who speaks on advocacy is anti-parent, angry, and even militant. I’ve had all these things used against me, and while I can’t speak for their accuracy in an unbiased way, I work very hard at channeling my anger appropriately and recognizing the importance of good parents. I certainly don’t see “parents” as the enemy, nor am I trying to wage a war. I’m trying to help people understand and trying to make sure my people can fully participate in and enjoy society – nothing more. So this isn’t exactly a one-way set of stereotypes.

So, when you hear something you disagree with today, I’ll give my thought on what your response should be: Consider whether there may be nuances you aren’t aware of. When someone says they want to get rid of food stamps, are they saying, “I want the poor to starve” or are they saying, “I think the poor know where this money should go better than I do?” When a parent says their 18 year old son wears a diaper, is it possible their 18 year old son has agreed to share that for a shared advocacy reason? Let’s not assume that’s not the case. No, I’m not saying to assume it is the case either. But we should listen and ask true questions, not just jump to accusations.