Title: Effective Communication Transcript

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One of the most important things that my son and other people with disabilities have taught me, is that in order for me to have effective communication with them… And if I see myself, as my son’s mother, say, as a leadership role and you see yourself as sort of a leadership role, as a support worker.

The best way to be a leader is to follow instead of lead. So, I’ve had to learn to let my son lead me and I follow. And that’s one of the best things that you can do. Instead of seeing yourself – I mean you are in a leadership position, you are in a position of some level of authority, but the best way that you can implement that and furthering effective communication and furthering relationships is to follow instead of lead.

And that can be hard because it’s much easier, we think, “Well, I can do it better. I can do it faster, or I can do it for the person. I’ll just do it.” And we think we’re doing a good job. But we’re not. We’re actually robbing people of the opportunities to speak for themselves, to make their own decisions and to learn from those.

I’ll share a little story with you. Whenever my son was in Kindergarten, and this was back in the early 1990’s, and he attended an inclusive elementary school. All the children with disabilities were in general education classes. There was no special education room. So, there were children with Down Syndrome, and there were children with Autism, and my son had Cerebral Palsy and, at the time, he was the only child – I mean, all these kids had other disabilities, but at the time, Benjamin was the only child that had a physical disability that caused him to need to use a wheelchair.

I’ve always been a big believer in natural peer support instead of having to have a “paid staff person” do everything. I don’t have paid staff people helping me. I mean, you know, if I need some help, somebody that’s my peer is going to help me. So, instead of having a teacher’s aid pushing Benjamin’s wheelchair – He could push himself a little bit, but he had his manual chair at the time, and he could only push himself a short distance. Instead of having a grown up to do that. I mean, who wants to be around a kid that’s got a grown up with them all the time, right? So, I encouraged him and his teachers, and his teachers agreed with me, that his peers would help him. The kids would literally fight over who was going to help Benjamin. I mean, there were almost like fist-fights in the Kindergarten classroom because everybody wanted to help Benjamin.

So, Benjamin came home from school one day and he says to me, “Mommy, I wish there was somebody else at school that used a wheelchair.” Well, as somebody, as a parent or somebody who cares about somebody, what’s your gut instinct? I mean, your gut instinct says, “Oh dear. He feels different. He feels like he’s the only one. I need to give him the talk. I need to sit him down and say, ‘Sweetie, it’s okay that you’re different, it’s okay that you have Cerebral Palsy and use a wheelchair.’ I need to give him the talk.”

But thankfully, I had learned several years before that from adults with disabilities, who are my greatest teachers, that I needed to make sure that I understood what they were really trying to tell me. Because some of the people that I was learning from at the time had difficult speech and I would have to ask them to repeat it because I didn’t get what they were saying and I didn’t want to assume that I knew what they were saying. That’s insulting to people. I mean, how demeaning.

So, people with disabilities had taught me that I need to clarify. I need to make sure I know what the other person is saying. My gut instinct was to give my son ‘the talk.’ And I thought, “No, I need to make sure I understand what he’s saying.” And boy, was I wrong.

So, the question you learn to ask is, “What do you mean?” Now, when you ask somebody, “What do you mean?”, they don’t repeat themselves like a parrot. They will rephrase it. They will say it in a different way.

So, that day it took about three “What do you means?”. I don’t remember the exact conversation, but he said, “I wish somebody else at school used a wheelchair.” And I said, “What do you mean?” And he answered me, and I still didn’t quite get it and I said, “What do you mean?” again. And I still didn’t get quite get it. Finally, the third “What do you mean?” I got it.

I was so far off the mark. What my son meant was that he saw how much joy the other children got from helping him. He saw how much fun they had helping him, and he knew that they helped him because he used a wheelchair. So, he wanted there to be another child that used a wheelchair so that he could have the same fun and the same joy by helping that child.

Imagine if I had given ‘the talk’ and put ideas in his head that weren’t even there. That I could probably, literally, have ruined him for life. So one of the things we need to do is to clarify.

And some of this comes from a great author named Wendell Johnson. He died in the 1950’s but he was a great person about language, communication, and about the difficulties we have when there’s miscommunication. He goes on to say that world wars could be prevented if we had more effective communication. Divorces could be prevented if we had more effective communication. So, certainly, in the job that you do, having more effective communication is important.

So, we need to make sure that we clarify. And Wendell Johnson goes so far as to suggest that we say, “What do you mean?”. And again, the person won’t repeat themselves like a parrot, they will rephrase it.  And you can say, “What do you mean?” as many times as you want. You could also repeat back to the person. Just say “Well, okay, so are you saying that such and such?” And then they’ll either say, “Yes, you got it.” Or “No, no, no, you don’t understand at all.” And they will rephrase it. So we ask, “What do you mean?” and we ask that for clarity.

Then we ask, “How do you know?” In the case of my son saying, I didn’t need to ask him “How do you know?” That was his feeling. But if I think about the physical therapist who said to me when my son was 18 months old, “If children with Cerebral Palsy don’t sit up until the age of 2, they never will.” If I had known back then, what I knew later, I would have said, “What do you mean? You mean never, ever?” and then I would have said, “How do you know?” And of course, if I said, “How do you know?” She would have probably said a professor told me. To which I would have said, “Well, I don’t think the professor knows what he’s talking about.”

So, we have “What do you mean?”, “How do you know?”, and then we add “What next?”. What do we do with this information?

That is going to promote more effective communication. It’s going to help us get a better understanding of what people with disabilities are really trying to say to us because I think there’s a lot of miscommunication that really can break people’s hearts and cause us to make decisions that are sometimes totally, totally wrong.