Basic human respect
Diagnosed disability or not, who of us finds it pleasant to be talked about where we can hear what's being said? Recently my wife and I visited her 102-year-old grandfather - he is a friendly, intelligent, caring man who lives on his own with daily check-ins from nearby friends and family (interdependence!). We three had a lovely conversation about topics great and small, from recipes to travels in Italy and memories of ice skating. When other family members arrived this dynamic drastically changed. Where the three of us had a slow, rambling conversation with slightly raised voices so Grandpa could hear, four others burst into the room and appeared to have more interest in talking with each other than accommodating everyone in the room. Grandpa stopped talking, began to look tired, and clearly had trouble hearing the conversation. Family members said things like, "How is he today?," gesturing to Grandpa without talking to him.
Team Meetings
Now, imagine being told you're going to a team meeting about your life. You're given short notice, no choice in where the meeting is being held or whom is invited. No one gives you time to prepare or materials to review before the meeting, and suddenly this event is upon you. You find yourself in a room at your school or workplace, maybe where you live or at a family member's home, or maybe online. Many other people are there; some whom you like and others whom you don't. You're told to sit at a table where the "team members" watch your every move. All eyes are on you, and everyone makes small talk with each other, not with you.
A serious-looking person begins the meeting and proceeds to talk about intimate topics including your showering and toileting habits, your weight and eating troubles, with whom you've gone on dates since the last meeting, how terribly you failed a language-based assessment, that you are "functioning at a 4-year-old level" ... on and on. People talk about their concerns for you, what supports they think you need. They pointedly avoid making eye contact with you, all the while discussing your most personal details. At some point someone decides that the meeting is done and the "team" has a plan for your life.
Some excellent exceptions include educators, administrators, families, and other team members who support students and adults in leading or co-leading their own meetings. While student-led IEP meetings are happening more often, sadly this is still a radical concept to many school districts. Why on Earth would we want to respect students enough to support them in leading their lives?
Baby Talk
When presenting about presuming competence, my mentor and friend Mary A. Falvey, PhD often gives the example of talking to an unborn child: many of us with pregnant friends or family members have, with consent, touched their pregnant bellies and talked to the unborn children within. We assume that a fetus can hear, understand, and feel our caring intentions. Mary then asks, "What happens when the baby is born with a disability?"
We would like to think a diagnosis doesn't change our behavior, yet often it does. If the baby has an obvious disability (one we know about), our language might change, our affect might change, and worst of all we might stop talking to them altogether. Baby talk, feelings of frustration, and lack of communication might continue for the person's lifetime, not only from us but from the people to whom we model this presumption of incompetence.
What to do about these things?
Where I'm in charge I set expectations about treating people as people, such as:
We talk to people, not about them
We ask for consent to talk about sensitive topics, and honor the person's response
We use plain language
We respect people and their families as the experts they are
Where I'm not in charge (as a consultant during team meetings, for example) I model what I think is respectful behavior:
I talk directly to the person whose meeting it is
I show that I'm excited to be in the meeting
I celebrate successes, skills, and interests
I speak in plain language
I leave time and space for questions and ideas
I get the person's and family's feedback before finalizing reports
I note (out loud!) that it can be hard for people to be observed and interviewed by strangers
I thank the person for their time and expertise
"Disabled in body does not mean disabled in mind." - great{with}talent, 2018