Being dependent on vs being limited by

This isn’t quite the right concept but… these things are different:

  • being dependent on something
  • being unpleasantly or destructively limited by something

Being dependent on something can be really good. It can make things possible that weren’t before it. We’re all dependent on technology in one way or another (for instance, heating and air conditioning. Shoes. Large-scale agriculture.).

Sometimes people object to dependence because they think it will impose an unpleasant limitation. Even when it would actually make more things possible. 

Like, someone thinks they (or someone in their care) shouldn’t use a wheelchair because then they’ll only be able to go where a wheelchair can go. They won’t be able to use stairs and such anymore. And sometimes this is true.

But often, this can mean that someone can only go as far as they can walk, and can only stay out for as long as they can stand. So they have trouble leaving the house, or going places for long periods of time. And are much more limited than they otherwise would be. Dependence isn’t bad, if it makes you able to do more things. 

AAC can be like this, too. Verbal speech is more flexible, in principle, all things being equal. But all things aren’t equal, even for people who have some verbal speech. The important thing is for someone to have as much communication as possible. For people who get more communication from relying on things other than speech, dependence isn’t a bad thing. It’s good. It makes life better.

Getting more ability to do stuff you care about should be the goal. Not a particular way of doing it. Not judged against a theoretical ideal. Judged against what actually works best for you (or your child).

Another thing about therapy

A good percentage of people who need therapy only get it after repeatedly failing at things everyone around them can do. (Especially developmentally disabled children). This is often humiliating.

This means that therapy can be triggering. Therapy involves focusing on difficulties that someone has learned to regard as humiliating flaws. It’s important to keep this in mind when you give therapy.

Don’t expect someone to trust you right away. You have to demonstrate that you are trustworthy. You have to show them that you can be relied on to treat them respectfully. You have to demonstrate that you won’t ever regard them as broken, or make respecting them contingent on them progressing toward a cure.

And it needs to be true. You can’t just affect safety and kindness. You have to actually be trustworthy in a deep way, and let that show through your action.

You don’t get to decide when you have established trust; you don’t get to decide when someone receiving therapy should feel safe. It’s up to the person getting the therapy. (Even if they are a child.)

And if you understand this, you’ll be much more able to help people.

Something about body language

It’s very common for atypical people to be told that they have no body language, whether or not this is actually true.

If you:

  • Have an atypical body, or:
  • Move in unusual ways, or:
  • Have an atypical face, or:
  • Speak oddly

Lots of people will tell you that:

  • You have no body language, or:
  • You have no tones of voice, or:
  • You’re impossible to read, or:
  • You have a flat affect, or:
  • You have no facial expressions

This can be for all kinds of reasons that have nothing to do with whether or not you have these things. For instance:

  • People who find your body uncomfortable, and try to avoid looking, tend not to pick up on body language
  • Likewise with faces – someone who isn’t looking at your face because they don’t want to see its odd shape, may well think you have no facial expressions because they aren’t seeing them
  • If you move unusually, you may have body language that many people aren’t familiar with. This doesn’t mean you don’t have any. It means their social skills are lacking.
  • For instance, they may not realize that rocking and hand flapping are often forms of expressive body language.
  • They may be assuming that people like you don’t have body language etc, and therefore actively ignoring yours because it doesn’t have a place in their worldview.

It may be true that you don’t have body language, tones of voice, facial expressions, or whatever. But it may not be, and it’s very common for people to get this wrong.

Example of assuming we’re not listening: TalkingTiles

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.