On Independence and Autonomy
Independence
Independence is highly valued in American society. It is so valued that goals target achieving independence in skills. But is independence really the end goal?
independence: freedom from the control, influence, support, aid, or the like, or others
Independence means you do not need any help from others.
Independence is not bad in and of itself. But as humans, we need each other. If we have learned one thing from our shared experience of a pandemic, it is how much we need each other. We need to work together and help each other. We need strong systems of support. Strong systems of support help build strong communities. Strong communities are connected and interdependent.
A teenager with dyslexia and other learning disabilities may be able to independently read an article. But they may not remember much of it because of the effort it took. They may need it read to them to fully understand it. They may be able to independently write a basic one-paragraph response to show that understanding. However, with a scribe maybe they can write a complex two-page response really digging into the issues.
A child with physical, visual, and intellectual disabilities may not be able to independently access a communication system. They may be able to independently signal yes and no. But they may not be able to access a robust language system by themselves. With a smart partner maybe they can use partner-assisted scanning to say anything they want at the time and place of their choosing.
Having a disability increases the chances you will need help in some form. It might be through assistive technology tools. Or it might come from the support of another human being. Often, it is a combination of the two. More to the point, every human needs help in some form on occasion. So why do we hold independence as the gold standard?
Being able to access and use an AAC system is not the end goal of AAC. Our long-term goal is that the person can communicate their thoughts, feelings, and stories. The big goal is that they can say what they want, when they want, to whom they want, where they want. It is about the message, not the how!
Autonomy
Autonomy isn’t talked about – or thought about – much. It is time we realized its importance.
autonomy: the ability to act on one’s own thoughts, values, and interests
Autonomy means you are able to determine which thoughts, values, and interests you want to act on.
It means that given the support you need, you can do and say what you want. It is choosing the words you want to use for yourself. It is choosing when you will communicate, or not. It is choosing how you will communicate. It is choosing who you will communicate with. It means that given the support you need, you can show the extent of your knowledge and ability. It might mean co-constructing your messages with a smart partner. It means expressing your personality. Getting the support you need might motivate you to communicate rather than deciding it is not worth the effort. Autonomy means being able to offer your best communication. It means avoiding overwhelming exhaustion, frustration, and burnout. It means feeling that you are seen and heard.
In the examples above, the teen and the child have autonomy when they are provided with the support they need.
“Ultimately, intervention targets should build communication skills that effectively support self-determination through self-advocacy and problem-solving.”
Wehmeyer, 1996
Autonomy is so much more important than independence. Our end goal should be communication autonomy.
Focusing on autonomy (rather than independence) empowers authentic communication that is meaningful to the person. We recognize their potential. We arm them with knowledge and strategies and tools – and support – so that they can navigate the world just as they are. Focusing on autonomy means we support the AAC user while following their lead. We let them shine!
Reference and Related Resource
- Lomah Disability Podcast episode #165: More Than Requests: Using AAC for Authentic Connection
- Wehmeyer, M. L. (1996). Self-determination as an educational outcome: Why is it important to children, youth and adults with disabilities? In D. J. Sands & M. L. Wehmeyer (Eds.), Self-determination across the life span: Independence and choice for people with disabilities (pp. 15–34). Baltimore, MD: Brookes.
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