Category: Uncategorized

Example of assuming we’re not listening: TalkingTiles

Real Social Skills

There is an AAC app called TalkingTiles, that uses an interesting approach to managing communication pages. It offers cloud-based subscriptions and a library of available tiles, and can sync across multiple devices. It’s also possible to edit communication pages on a computer rather than on the iPad or whatever other mobile device it’s running on.

That’s good. What’s bad, is that they think of the users of this app as parents and therapists working with people who need communication software. They don’t seem to consider the people who actually use the app for expressive communication to be users; the app is something that is used on them rather than by them.

They describe it thusly:

TalkingTILES has helped those inflicted with a communication disability brought on by a neurological disorder (such as Autism, Cerebral Palsey, ALS or Parkinson’s) as with those who have suffered a trauma (such stroke or brain injury). We’ve taken a collaborative approach to AAC bringing together professionals (therapists, educators and support workers) and their clients,caregivers and families, enabling remote programming and remote content sharing across each other’s devices making AAC therapy more productive and efficient for both client and professional. 

Do you see what’s missing here? The end user, the person who will actually be using the device to communicate, is not addressed directly.
And it’s much more explicit in the user accounts. You have to have a cloud-based subscription to make the software do much, and there are two kinds of accounts:
TalkingTILES for Professionals & Caregivers :

• Professional AAC Support Teams – therapists, educators & support workers- your Mozzaz Cloud Subscription is FREE. We want you to learn, try and trust TalkingTILES as an effective AAC solution for your clients.
 
• Caregivers & Families – we understand the challenges and commitments that come with supporting and helping your loved one with a communication disorder. TalkingTILES offers the most flexible and adaptable AAC app that can be tailored to your personal needs at a very affordable price. We make AAC therapy productive and efficient through our collaborative model with professionals on your team. A Mozzaz Cloud Subscription plan will save you time, money and be more efficient with your AAC goals and programming.
There isn’t an option to register an account for yourself, as the person who will actually be using the app to communicate. There should be. People who use software to communicate have agency, and sometimes look for software options for themselves. Product descriptions, marketing, and design ought to take this into account.
When you’re designing adaptive equipment or software for people with disabilities, please remember that people with disabilities use it, and address them when you describe your product.

Remembering that people with disabilities have always existed

Real Social Skills

Content warning: This post talks about institutionalization in graphic terms. Proceed with caution.

Sometimes people say things like this:

  • “When I was a kid, no one had all these learning disabilities and syndromes!”
  • “We’re all so much sicker these days. I never heard of all these diseases until recently.”

And – people who say this? You know why you never met anyone like this as a child?

Because, when you were a kid, people with learning disabilities, syndromes, illnesses, etc weren’t allowed to go to your school. A good percentage of them weren’t even allowed to live in your town.

They were kept away from people like you, and kept in horrifying conditions, so that you and other more socially valued people wouldn’t have to see them or know they existed. (It’s not your fault. You were a child and didn’t know. But it was done in your name, partly.) And a lot of them did not survive childhood because they were not given the care that would have made it possible. And this isn’t over. This still happens.

(And people with disabilities are still afraid of it happening to them).

But thing are getting a bit better – or, more accurately, people who have been fighting this evil for decades are starting to win.

So, these days, many children like those who were carefully kept away from you and your peers are allowed to grow up in families. In schools. As part of their communities. Visibly. And, this means more of them are suriving childhood.

And some adults with disabilities are now treated as adults and allowed to acknowledge disability without forfeiting adulthood. Not everyone, not yet. Not enough. But some. More than there used to be, fewer than there should be.

People with disabilities have always existed. And the fact that everyone now has to notice that they exist is a dramatic improvement. It’s a good thing that you see more people with disabilities now. It means some of them aren’t brutally hidden in institutions. Your children are growing up in a better world than you did. Remember this.

Expertise and credentials aren’t the same thing

Real Social Skills

Generally speaking:

  • It’s possible to have credentials without being an expert.
  • It’s possible to be an expert without having credentials.

Some specific examples

  • Someone with Special Autism Training isn’t necessarily an expert in communicating with autistic people
  • It’s actually likely that they’ve been thoroughly taught to be incapable of doing so
  • People with rare medical conditions often know things most doctors they encounter don’t
  • Someone with a college degree might not know as much as someone who studied the same subject privately

This doesn’t mean credentials are irrelevant – but they only tell you so much. Don’t confuse them with expertise.

Autonomy includes the right to be wrong

Real Social Skills

Irrational people have the right to make choices.

Personal autonomy is not conditional on other people thinking that you are using it correctly.
That’s pretty much what makes it personal autonomy.
For instance, people have the right not to interact with dogs
  • Even if the only reason they don’t want to is that they have a phobia
  • Even if the phobia is completely irrational
  • Even if they would be better off getting over the phobia and learning to like dogs
  • None of this gives anyone the right to make them interact with the dog
  • That’s their business and their choice
People have the right to decide what they eat
  • Even if it’s for ridiculous reasons
  • Even if they think it’s healthy and it isn’t
  • Even if they are in the grip of food fads and think that avoiding the color blue will solve their health problems
  • Even if they’re too religious for their own good
  • Even if they’re picky
  • Even if they’re fat
  • Even if they’re thin
  • Even if they’re being overly cautious about their allergies
  • Even if they are completely, utterly wrong
  • People have the right to make their own decisions about these things
People have the right to end relationships

  • Even if they’re only doing it because of a fear of committment
  • Even if the person they’re breaking up with has all kinds of reasons for thinking the relationship is a good idea
  • Even if they’re going to regret it
  • Even if it’s a stupid decision
  • People have the right to make their own choices about who who spend time with and be close with
People have the right to choose how to spend their time
  • Even if they are wasting it
  • Even if they will regret wasting it
  • Even if they have tons of potential and could be accomplishing so much more if they just applied themselves
  • Even if they watch a lot of TV and have terrible taste in TV
  • Even if they express dissatisfaction with the choices they are making
  • People’s time is their own, and they have the right to choose how they spend it.
The right to make choices includes the right to make mistakes.

A starting assumption

Real Social Skills

If:

  • People who can communicate clearly generally say they don’t like something, and/or
  • People who are allowed to say no and have that respected generally refuse to do something…

Then:

  • You should assume that people who aren’t allowed to say no don’t like it either, and:
  • You should assume that people who can’t communicate clearly don’t like it either

And:

  • You shouldn’t do that thing to someone who can’t say no without a *really* compelling reason. 

None of these things are compelling reasons:

  • They’re low-functioning, r-worded, have special needs, or are difficult to manage
  • They’re not actually screaming when you do the thing to them
  • They’re a compliant audience
  • You enjoy doing the thing
  • You feel that it is good for them
  • It makes them look more normal
  • It makes them easier to manage
  • It keeps them busy
  • It’s therapy
  • An experienced expert told you to
  • It might conceivably offer some health benefits
  • Your religion says it is important

When people can’t say no easily, it’s of the utmost important to make good guesses about what they’re consenting to and what they aren’t. If you start from the assumption that they don’t consent to things most other people don’t consent to, you’ll do a lot less harm.

Assuming we are listening

Real Social Skills

Often, people write about marginalized groups of people, in ways that make it clear that they’re assuming that we don’t read what they say.

So – whenever you’re writing about a group of people, assume that some members of that group are listening.

Disabled folks, people of all races and ethnic groups, people of all or no religion, women, men, trans* people, poor people, rich people, mothers, fathers, children, teenagers, lots of other examples…

When you speak or write publicly, everyone in every group might be listening. Assume they are. It will make your work better.

Recreational anger

Real Social Skills

Sometimes it is fun to be angry.

Sometimes it is satisfying. Sometimes it fuels creativity.

And sometimes we get angry on purpose, for the sake of being angry.

We go out and look at angry-making things. To get angry. 

It’s ok to do that, up to a point. Because it can be useful, and it can also be an effective way of coping with some of the awful things in the world. (Seeking it out on purpose and dealing with it on your terms can be better than waiting for it to come to you.)

But it’s important to know when you’re seeking out angry-things and not to make an anger-centered world view.

There is a lot to be angry about. A lot a lot a lot. And it’s good to know that. But don’t make the rest of the world disappear, because there’s a lot of good too.

And when you’re doing recreational anger, don’t direct your anger at people who don’t deserve it. It’s ok to get really angry on purpose, but it’s not ok to vent it on someone who innocently used a problematic word after you just read a bunch of horrible articles to make yourself angry.

Make space for anger. Use anger. Use your powers of anger for good. But don’t let it take up all the space.

Another thing about rocking

Real Social Skills

Rocking can make things bearable that aren’t otherwise.

There is the rock for when it’s scary. Or overloading. That helps. It does.

And sometimes, rocking makes it possible to stay in situations and have interactions that would otherwise be impossible.

If you get overloaded and you don’t rock, it might be time you tried.

Asking what things mean

Real Social Skills

 Sometimes people say abstract things that aren’t very comprehensible.

Sometimes this is because they are assuming background knowledge you don’t have.

Sometimes this is because they’re referencing something complicated, and not being clear.

Sometimes this is because they aren’t actually saying much, and are using convoluted words to sound like they are.

It is possible to ask for clarification, but not directly. You can’t say “Did you actually say anything?” But you can often get clarification with one of these kinds of questions:

  • That sounds really interesting, can you say more about it?
  • I’m not sure I understood, can you give me an example?
  • That concept sounds really great, but I’m not sure I quite got it – how does that work in concrete terms?
This frames things as you listening, wanting to understand, and asking for their help in understanding. (Which is in fact what you are doing, even if you suspect that they aren’t saying much.) This usually doesn’t offend anyone, because people like to be understood.
(That said, people do sometimes take offense, and if they start to take offense, back off right away rather than trying to explain the intent of your question. It won’t help.)

Something simple that can make presentations more accessible

Real Social Skills

If you will be using a handout in your presentation

  • Make more copies than you think you need. (Accessibility is more important than conserving paper)
  • If it seems like you don’t have enough copies, ask if anyone needs their own in order to be able to follow
  • Wait 10 seconds to give people a chance to respond.
  • If anyone needs their own, give it to them before you pass the sheets around to everyone else
  • (Some people need their own because they have to hold it in a particular way to be able to see the print clearly. Or because they need to write on it in order to follow. Or because they have communication problems that make sharing a document difficult).
  • Before your presentation, upload your handout file to dropbox or another file sharing site
  • Before you begin, let people know that it is available and where to find it
  • Put the URL on the print copies and the board
  • This is helpful because some people need large print or other modifications, or can turn pages on a computer but not a printout, and making files available makes the content usable