Joel, You’re Not Polite!

First, a word on the word “bigot.”  I’m old enough that I know there’s a time to be nice – that’s when people, upon hearing of an injustice, make real, concrete steps to fix it while seeking out the input of those they hurt.  I’ll be nice when that situation seems possible.  But if you demonstrate that you don’t get it, I’m not going to make it easy on you or comfortable for you to act bigoted.  Sure, a bigot would like me to say “we have a small disagreement” rather than “you are a bigot.”  After all, “we have a small disagreement” means he doesn’t have to implement any change.  “You are a bigot” requires action – either more bigotry or a turn from bigotry.

To be honest, if everyone called out bigotry in direct, “harsh” language, there would be a lot less bigotry.  One thing that allows bigotry to continue is when those not directly involved simply stay silent or minimize the act, out of politeness towards the bigot.

If you are going to increase your bigotosity just because someone pointed out your bigotry in a rude way, well that’s pretty much the definition of a bigot.  Feel free to be rude back to someone rude to you – but if you’re doing something bigoted, it’s time for a change, even if it was pointed out in a rude way.  You’re not morally superior if you hold your ground on bigotry because the other person committed a moral transgression in your eyes (rudeness).  No, in that situation, you’re trying to be controlling.  You’re trying to enforce your idea of rudeness.  Well, that’s fine, but please do it with something other than bigotry as your “stick.”

In fact it is politeness, or the perceived idea of politeness, combined with power imbalances and subtle bigotry in bystanders that prevents people from confronting bigotry.  For example, watch people’s reactions much of the time when a non-disabled person refuses to give up a seat on public transportation to someone who apparently needs it more.  Now, I’m not talking about someone who explains that they need the seat – I’m talking about someone who just doesn’t give a care about someone else.  We’ve been taught it’s rude to get involved in other people’s business.  Sure, we’ll probably speak up if the seat-hogger himself gets rude towards someone else, but if he stays silent, we generally do to.  In other words, we’re more concerned about the seat hogger’s feelings than the person who needs the seat.  So who has the power?  Obviously the one that gets us to react in a way that helps them.

Granted, I probably wouldn’t recommend yelling at the seat hogger, “You dumb ass, can’t you see that someone else needs that seat more than you?”  I would probably suggest an attempt at politeness.  But if that request is refused, or people on the bus know that this person does this repeatedly and polite discussion doesn’t work, then it may be time to at least make the person as uncomfortable as he’s made the people who might need his seat.

My tactic is to generally point out a problem to someone and then watch where they go with it.  Generally, I give them a lot of time (sometimes months).  I start with giving them a chance to see the problem for themselves, after pointing out something that should make the problem obvious.  Later, I explain the problem in detail, again still trying to be “polite.” But if no movement happens, I’m done with politeness – since clearly that didn’t work.  I’m going to be direct enough that it’s not comfortable to remain doing the wrong thing.  Other people do things differently, and I’m glad there are many styles of advocacy.  Sometimes my style works.  Sometimes someone else’s works.  That said, I’d be curious if politeness has ever worked when when someone doesn’t correct the issue in a relatively short period of time – I think at a point, it takes shame, negative publicity, rudeness, and refusal to allow the action to continue without being contested.

To me, the ironic thing is when I’m accused of being rude – perhaps a harm that I’ve caused – but the harm I’m complaining about is far worse than simple rudeness.  For instance, I remember being handed a friend’s wallet after she paid for some items in a store.  The clerk thought I was her minder or something, and that I should have her credit cards and cash.  I asked the clerk, “Do you normally hand cash that belongs to one person to another person?”  The clerk responded by saying, “You don’t have to be so rude.”  Maybe he was right – I don’t know.  But it’s interesting that now the problem was my rudeness, not the fact that he just treated his customer as if she was incapable of holding her own wallet, and, by extension, managing her own financial affairs.  I’d say that was rude too.  Probably more rude than a complaint about giving somebody a wallet that belongs to someone else!

Really, this wasn’t about rudeness.  It was about comfort.  The clerk was now uncomfortable, just as my friend was when her wallet was handed to me.  And we’re not supposed to make you uncomfortable, apparently.  Even if you just made someone very uncomfortable, dismissed their ability to manage their own affairs, prevented them from accessing services, or were otherwise doing something bigoted.  Bigotry is not supposed to be confronted “rudely,” at least if the person doing it thinks they are a nice person who has done nothing wrong in their own eyes.  A large amount of this isn’t about rudeness, but rather about being right or wrong.  And being told you’re wrong often feels rude.  Sure, maybe the right words will help you digest things, but at the end of the day, you either are or aren’t willing to change your behavior and recognize your prior behavior as bigoted (whatever word you use for it).

I’d be curious how others handle this.  What do you do when weeks or months of politeness fails?  Do you stay polite?  What are you changing to get change in the other person or organization?

What Makes a Good Communication System…Part 4

Previously, I mentioned the need for a way to say no, the need to be able to report abuse, and the need to be able to be inappropriate.  For this post, which I think will be the final post in this series, I want to talk about the value of babble.

A close-up of a magnifying glass with a blury background that may be a desk

Magnifying Glass by Auntie P (Flickr), Licensed CC BY-NC-SA 2.0

Since I wrote JTalk years ago, I’ve talked to many users and parents about how my text-to-speech software was and is used.  Very few people use it as I thought they would.  Instead, I’ve heard some neat stories about how the software is making people’s lives better in ways I wouldn’t have predicted.  One of the more common usage is to connect meaning, sound, and writing.

It’s a conceptual leap to realize that symbols can have meaning, whether those symbols are letters on a piece of paper or sounds made by someone’s vocal cords.  Once that leap is made, however, people typically want to explore the symbols, their relationships, how to write them, and how to say them.

With the users of JTalk, there were three things I heard multiple people doing:

  • Typing repetitive “gibberish” and having the computer speak it
  • Typing something to communicate, listening to the computer speak it, then repeating the words vocally
  • Typing words to hear and then “practicing” alone, having the computer speak the word and then speaking it vocally

The first of these, typing repetitive “gibberish” and then having the computer speak it, consisted of something like typing long strings of a single letter (“TTTTTTTTTTTTTTTT….”) and then hitting speak.  Or it might consist of a repetitive sound, like “Wowowowowowowowowowowowowowowowo…”  In effect, these might be seen as stims (they are repetitive, and that can be calming or grounding).  But I think more may be at play here, at least some of the time.  Just as a neurotypical starts with vocal language by babbling and making nonsense sounds, some autistic people may do the same when they come to language late.  Further, this type of sound play is linking a symbol to a sound (“what does ‘wo’ sound like?”).  In effect, it’s teaching a person that these sounds can be strung together in ways that produce desired output – something people who speak do every day.

Of course I won’t ignore or dismiss the value of it just from a stim standpoint!  But it is more than that for some people.  Unfortunately, this type of sound play can also be annoying or distracting to others.  Certainly there are times and places where it is inappropriate, but it’s important to ensure that there is a time and place where it is appropriate!  There’s real learning and language development here for some people (and for others, it’s just plain calming to have control and assurance of what comes next).

Other people might type something and then hit speak, listening carefully to what is said.  Then, they can repeat the words using their own voice.  I don’t do this so I don’t know for sure what people’s motivations are, but it seems as if it gives people confidence and a reference point to anchor their own speech.  They can hear the words and know what they sound like (they may already, but this will give extra confidence).  Regardless of the reason people do it, this seems to give people the confidence they need to initiate and respond to others verbally, when they would have remained silent otherwise.  So despite the apparent repetitive nature of this, it’s a good thing!

Yet others practice words in private.  In effect, it’s a way of people learning literacy, albeit backwards from how most neurotypicals learn it.  Most neurotypicals learn audible language first, then written language.  So they may need occasional help to connect the symbols on paper to sounds they already know.  Some autistic people do better in writing, so they may have a much larger written than spoken vocabulary (I’m one of these people).  They may know a many words that they can read and write, but can’t speak.  What better way than to have a non-judgemental and infinitely-patient device pronounce the word, as often as you need it, as repetitively as you need it, to get a handle on the word?

I suppose these things have less to do with the construction of a communication system than the uses that a system has.  But they are vital – it’s important a person with any communication system (including the standard vocal system!) gets a chance to play with sound and symbols, to develop the connections and confidence they need to communicate.  It’s also interesting that these types of activities are sometimes complained about by parents – particularly strings of “nonsense” sounds being emitted from a device.  It seems some people expect someone to take a new means of communicating and instantly speak deep thoughts eloquently to everyone.  Few people do that!  Most of us need to learn to use our communication tools, which involves a lot of just plain tinkering with voice, symbols, sounds, etc.

These activites fascinate me in another way, too.  I wrote JTalk for people who wouldn’t speak in some situations – yet I see people using JTalk (and other devices/software) so that they can speak more!  A common concern parents and others have when a person uses some speech is given alternatives to speech is that allowing someone to type (or gesture, symbol, write, etc) when they can talk will remove incentive for speaking from the person.  Quite the opposite seems to be the case – in many cases it seems having the speech device or system encourages people to speak more!  Trust me, as a part-time speaker, I’ll speak when I can speak and communicate my thoughts clearly.  Why wouldn’t I?  Unless it’s painful or difficult at the time (which means I probably wouldn’t communicate at all without alternatives), or completely inaccessible, speech is just plain easier and quicker.  It’s naturally self-reinforcing.  I don’t need communication alternatives removed to grasp this!  And, for me, having alternatives handy means I’m more willing to stretch myself and speak more – since I do have something to fall back onto for an emergency.  I don’t need to preserve speech energy for emergencies that rarely occur!

All this said, there’s a lot to designing communication systems, and a lot to understanding how they are used.  I’m not an expert on this, although I have a lot of experience personally with my communication needs.  I encourage people to learn more, both from users of speech alternatives, from family of users, and from clinicians.  There’s a lot more to this than just my opinions.

What Makes a Good Communication System…Part 3

A bunch of text, including *(#! #W:# and similar text, to stylistically represent internet cuss word obfuscationI’ve written about what makes a good communication system.  This time, I want to talk about newspeak and why it’s important to include controversial words in a communication system.

(Previously, I wrote about the need for a way to say “no” and the need to be able to report abuse)

I remember a talk a few years ago at Autreat where an audience member, during a demonstration of various AAC equipment, talked about how she didn’t like that a device had an icon representing a popular fast food joint, since that was essentially free advertising of the chain, the chain had very unhealthy food, and a child with such a device would then be asking to go there more often, when its’ more desirable to go elsewhere.  I’m probably paraphrasing things wrong, which is why I’m keeping this somewhat vague.

I had a problem with that thinking.  Sure, a parent may decide it’s a bad idea to go to a fast food chain for their child, which is certainly a parent’s right (and, frankly, probably good for the kid’s health).  But eliminating the vocabulary to ask this is not encouraging communication, nor is it providing the same sort of teachable time that a child who speaks would present.  A parent has the right to say no to a child’s request.  And, in fact, parents do so quite often – for the good of their children.  Eventually children learn that some things are off-limits and that continued pestering of the parents will result in negative consequences.  As for the icon choice being free advertising, how else would you represent a fast food chain?  The brand logo seems like an obvious choice!  (note that I did agree with her that only including one fast food eatery isn’t a good idea – any system should strive to include multiple options.

There’s far more controversial things than fast food chains, though.  If you spoke during primary school, do you remember when you first said a naughty word?  For most of us, I’m guessing that was pretty much the first year we were at school.  Certainly most of us knew enough to not say it in front of the teacher (although some of us probably learned that one the hard way!).  In other words, we learned an proper time and place for cussing: you can laugh about the words with your friends on the playground, but don’t do it in front of any adults or any tattle tales!  This is a huge lesson when it comes to communication: language use should differ in different environments.

So, when should a child have cuss-words as part of their vocabulary, if they use a non-spoken language system?  The answer is, for parents and teachers: before you would like them to!  Certainly a school or parent shouldn’t spend hours teaching how to cuss, but the language should be subtly made available, and consequences of its’ use should also be made available!  If the child does cuss at mom to get a reaction, it’s entirely proper for mom to react – just not by eliminating vocabulary.

Likewise, when was the first time you might have talked to another kid about sex?  Once again, it was probably well before it was “age appropriate” in the eyes of parents (who probably would prefer those topics to wait some time).  A language system needs the words that a 13-year-old will use when secretly looking at Playboy magazines with another kid.  You might not want a 13-year-old to look at Playboys, but that doesn’t mean he shouldn’t have the language to express himself.  You don’t duct tape the mouth of a typical child so he won’t talk about naughty pictures with a friend!

In 1984, George Orwell describes a future where words are eliminated from language to ensure “goodthink:”

“Don’t you see that the whole aim of Newspeak is to narrow the range of thought? In the end we shall make thought-crime literally impossible, because there will be no words in which to express it. Every concept that can ever be needed will be expressed with exactly one word, with its meaning rigidly defined and all its subsidiary meanings rubbed out. … Every year fewer and fewer words, and the range of consciousness always a little smaller.”

Sadly, I’ve seen communication systems for Children programmed to offer a sort-of “newspeak.”  I’m sure it also happens with adults.  It’s convenient to never have anyone bring up any uncomfortable subjects, never have words that cause disruption.  But it’s not how typical children (or adults) communicate, and it’s not how people with communication disabilities should be forced to communicate.

Certainly different people need different vocabulary, but I very much support a vocabulary system that can include words that may not be the focus of instruction, and may even be “inappropriate.”  Newspeak is not an alternative to teaching proper language use!

What Makes a Good Communication System…Part 2

In my previous post, I talked about how “no” is one of the most important things we communicate.

That’s not the only important thing to have on a communication system.  When I see a new communication system, my first question is, “How do they say ‘no?'”  But, right after that, my next question is: “How do they report abuse?”

Certainly, I’m not an expert.  I hope others will comment and fill in the gaps I ignored.

“An Empty Park” by, licensed CC BY-NC-SA 2.0

This post will be hard for some to read.  For some of us, we’ve survived abuse.  For others, the abuse may not have stopped.  And my heart breaks for the parents who are working so hard to protect their children, but who just can’t protect them all the time.

While it’s hard to get good numbers, we know, conclusively, that autistic and other disabled people are significantly more likely to face abuse throughout our lives.  There’s some well-researched figures out there that are downright frightening.  One article indicates the following:

  •  “… Roughly 5 million crimes are committed against people with developmental disabilities in the United States each year. She compares this with 8,000 hate crimes, 1 million elder abuse victims and 1 million spousal assault victims 1 each year.”
  • “… Sobsey and Doe (1991) found that 80% of a sample of 162 people with developmental and other substantial disabilities who had been sexually assaulted had been sexually assaulted more than once, while 49.6% had experienced 10 or more sexual assaults.”

These are not isolated statistics.  Study after study confirms that most of us (disabled people in general) have been sexually abused and almost all of us have been abused in sexual, physical, or psychological ways.

From my personal experience, out of my close autistic friends, I know none that I’ve talked about my abuse with who haven’t also talked of their own experiences with abuse.

So this is serious.

Autistic people are way more likely to need to report abuse than most people are (that said, abuse in general is way more common than it should be, shockingly so even).  And the abuse doesn’t stop at age 18, either, but can continue throughout a lifetime.

One motivation of abusers is a desire not to get caught.  Who could be a better victim, in the abusers’ eyes, than someone who can’t report them?

How to help

All communication systems (I’m not just talking technology) need to progress to allowing an individual to report abuse to a third party.  I’ve seen several trends that concern me, and I urge people to find way to counter them.  Certainly each situation is unique and needs to be taken individually, but it’s equally important that the focus remain on finding a way to report abuse.

So, what can be done?

Encourage Multiple Communication Partners

No system should rely only on one or a small, closely knit group of communication partners.  A person needs to be able to communicate with people about abuse that may be outside their family or staff circles, for obvious reasons.  Thus, focus should be on encouraging communication with other people and forming close relationships with many different people.

Good Vocabulary Choice

Vocabulary (whether the user speaks or uses another method) needs to include words for body parts, bullying, and other potentially abuse-related terms.  Age-appropriate words (that is, words others that person’s physical age may use with each other and others, so it includes words that most certainly are ‘inappropriate’ in some contexts) and phrases relating to sex that the person understands need to be part of the vocabulary.  I caution people on assuming that an individual doesn’t know about sex or should be shielded from it – the statistics show that too many of us know all too much about rape.

Emotional Words

Most people helping others with communication focus a lot of time and effort on emotional words.  After all, what parent doesn’t want to hear their child someday express appreciation for their hard work?  And what parent doesn’t want to know how their child is feeling?  But sometimes the emotions get ignored for the sake of nouns or labels in a communication system, particularly for adults.  Sometimes communicating an emotion can lead to further questions that uncover abuse.  For instance, a child that used to be excited about school that is now reporting that they are upset and don’t want to go to school may be doing so because of treatment at that school.  Of course they may just not want to take a test or do some other task that has nothing to do with abuse – but it’s worth investigating changes like that.  Which takes us to…

All Forms of Communication

Many of us have trouble expressing emotion, asking for help, or reporting abuse.  As the Jerry Sandusky abuse cases have revealed, even athletic, strong men have trouble talking about abuse they’ve experienced.  There’s a ton of stigma associated with being a victim.  So even a person who wants others to help may not be able to use words to communicate.  They may use other forms of communication.  To quote an infamous motto, It’s time to listen.  As we know in NT (neurotypical) communication, most communication takes place nonverbally.  Autistics are no different here, although we may use different nonverbal communication techniques.  When someone changes habits, becomes agressive or withdrawn, has other health issues develop, etc, it’s important to examine all possible causes – not just “this person is autistic, so they do weird things.”  It’s true that we can do things just for the heck of it.  But we, like other people, almost always have a reason for things. And one reason can be abuse.

A Note About Recording

One technique that SLPs (Speech Language Pathologists) use when providing an assistive technology communication device is a devices’ record features.  This lets the SLP analyze actual usage of the device to find potential ways to improve vocabulary and general usage of the device.  As such, it can be a powerful too.  But it also can be used to abuse a person. All devices should indicate that recording is on and provide an easy, user-accessible (not just password protected programming menu) means of disabling and re-enabling the recording, preferably without logging such actions.  This allows a person to confidentially report abuse, without informing people that may have a vested interest in preventing the reporting.  It also lets people talk and communicate about private subject matters – something even a child, and certainly an adult, needs to fully participate in society.  I’ll get more into this part later.

I’m sure there are other things that can be done.  I’d love to hear from others about how we can find out about abuse, particularly from people that may have communication disabilities, such as autism.


What Makes a Good Communication System…Part 1

Those of you who know me probably won’t be surprised that my first post will include a rude gesture!  But for others, welcome here – I’m really not quite as evil as people seem to guess I am from my blog posts, and I hope you stick around long enough to figure that out!  So…on with the post.

At Autreat 2012, I spoke on designing asssistive technology (or, more specifically, how NOT to design it).  One of the points I brought up is the need for a complete communication system for everyone.  I’m not talking about the need for specific technology, but rather a combination of methods for someone to communicate.

I didn’t get too much into what communication should consist of.  Yet, too often, the what is overlooked while the focus becomes the how.  Focus becomes “how can this person communicate,” rather than “what should this person be able to communicate.”

Communication improves our quality of life.  But what is the “what” of communication?

  • The ability to change things
  • The ability to express emotion
  • The ability to inform others

That’s what it’s about, at least to me.  For me, as a part-time speech user (who is using speech probably 99% of the time right now), I feel I have good command of all three of these things.  That said, my ability to express emotion is best accomplished in writing and through keyboard based augmentative communciation devices.  I can’t say what I feel with my natural voice, but I sure can with a keyboard in front of me.  And I’ve learned that’s okay.

But, even more important than emotions is the ability to change things.  And there are several things that are so important that I don’t think any communication system should exclude them.  Sadly, I’ve seen too many children who are emerging communicators denied the ability to change things – particularly the important things.

I’ll be getting more into this in the next few posts.  But I’m going to start with “No.”

A rude gesture, which can be a powerful, visual way of expressing “No.”  Licensed according to the Creative Commons Attribution-Share Alike 2.0 Generic by vidrio.

The ability to say “NO!”

Everyone needs to have the ability to say “no,” even when it is inappropriate and there are consequences to the “no.”  The word “no” has tremendous power.  Most children learn “no” (or an equivalent) at a very young age.  Yet, “no,” has shades of power to it that go well beyond the power a 3 year old may be able to muster.

It can share an emotion, such as sadness, loss, or anger.  The word “no,” uttered in a forceful way, can show the true depth of emotion a person has about a situation that they don’t like (or which even is harming them).  Picture a meeting of support workers for an adult autistic person.  During that meeting, lots of words are flying about, lots of concepts, and lots of legal and social-work jargon.  Imagine now that the autistic person, already overwhelmed, pulls back a bit and can’t figure out how to insert himself into the conversation.  A loud shout of, “NO!” or “STOP!” can bring the meeting to a crashing halt and allow that autistic person to hopefully now insert themselves back into the decisions involving their own life.  That’s the power of emotion.

It can demonstrate a boundary.  Sadly, many autistic people are abused (most statistics show the vast majority of us are sexually abused as children).  “No” can show incredible power here, too.  After all, “No means no.”  In the US, the phrase “no means no” was coined as a way to express, “No, it’s not okay to rape your girlfriend, she has the right to say no.”  Similarly, even an autistic kid who can express “no” could stop some abuse just by putting up a clear boundary.  This type of communication is vital.  Sadly, not everyone will respect the boundary, but there are some people who will claim ignorance of the existence of a boundary without the boundary being expressed clearly and concisely.

It can also express choice.  One of the easiest things to teach someone about language is the power it gives them to change their environment.  But this only makes sense if the person is allowed a choice in things, and, particularly, allowed to say “NO!”  It might be motivating to a young child to ask, “Do you want to play with the puzzle or the doll?”  But it might be even more motivating for the child to say, “NO!” if it can have an impact on the child being able to avoid some activities they don’t enjoy.  Power is a tremendous motivator – all of us want power in our own lives.  And that legitimate need for control in our own lives can be a powerful motivator for further communication.  But it has to start somewhere.

Now, “NO!” doesn’t need to be spoken, screamed, or even written.  In fact, almost everyone knows a way to say “no” already.  It’s equally important to listen and respect that person’s way of doing so.  Certainly there are appropriate and inappropriate ways of saying no, but and sometimes saying “no” won’t get you out of something you need to do. But the ability to express that is important, as is the willingness for people to listen to it. If a person can grunt to say no, and it’s unambiguous, there’s no need to teach lots of language just to say something they can already communicate.  Focus on the nuances, not the concept of “no” at that point!  And listen when the “no” is communicated, however it’s communicated (as I’ve said, this doesn’t always mean going along with the no – but rather it simply means listening to it and responding appropriately).

So, the first thing I look for in a communication system is simple: Can the person say