Poppy has a habit of thinking out loud as he sits with me. He speaks about things we like to write about. Our topic today is one of his more repetitive themes, and one I never get weary of hearing.
Simply put, it is that I have immense value as I generate so much love. He tells me this all the time, and in many different ways. We have finally found a handful of academics that speak our language and we are going to share with you their message.
Before we do that let us stress that this issue of value is fundamental to our health; if our immediate community assigns to us only disability ratings, that can be depressing. Our community needs to see our value and hear our inner life. And they need to talk to us about it. Let’s begin by reviewing how we are characterized and whether it expresses or implies our value.
The APA (American Psychological Association) describes intellectual disability as follows:
…It is characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social and practical adaptive skills.
We are measured by normative tests. That simply means the tests have been standardized so that test-takers are evaluated in a similar way, no matter where or how they live or who administers the test. We do quite poorly here; my test grades couldn’t be any lower and therefore I serve my educational sentence in a segregated class in a segregated building.
We are also assessed. We can’t be assessed by a clinical interview for obvious reasons, therefore a psychologist speaks to our teachers, therapists and parents and possibly checks medical records and other reports. Those assessments seldom, if ever focus on our value and seem never to hear our voice.
So far we are not doing very well. As they say in the business, our outcomes are poor, What’s up here.? Where is my voice?
Here’s where our friends come in.
We strongly believe that voice does not simply mean speaking. Instead, voice can mean children’s preferences, opinions, and agency expressed over time and across contexts.” (Simmons and Watson PMLD Link Vol 26 No. 3 Issue 79.
Let me translate that into my language, I will never be a performer but I know a good performance when I see one. And I like to see as many performances and performers as can. I know both good from bad, more from less. I see, I hear, I judge.
And so I save the last word for those who test me. I am willful and when I don’t want to do something I get it right every time. And when I do something requested it is usually only for those I love and respect. Makes sense doesn’t it, it’s a trust thing.
So let me throw out a challenge to one and all. Listen at all times to those voices; note our preferences, opinions, and don’t forget our subtle actions that convey our intentions. We do these things not to entertain, it is our voice.