Video Transcript: Understanding Intellectual Disabilities

So we're going to cover that idea of what is intellectual disability. Today we're going to talk about strategies to try and then also highlight some plans that have been part of actual churches, and actual settings. So again, remember, I shared a lot of strategies with autism spectrum disorder; many of those actual strategies could be helpful. So having this timer and having a visual representation of time, of putting maybe a list on this little whiteboard of things that need to be accomplished, or whatever that might be, with a timer, might also be really helpful for a person with an intellectual disability. So giving very specific feedback about this made somebody sad. All of those are things that may be really helpful for an individual who has an intellectual disability. 

So again, mix and match strategies, but we're just pouring a lot of them into you so that you have a giant toolbox at the end of this course, and nobody can go back and say, Oh, we know why we should do this but we don't know how. We're going to push the buzzer that says ‘not’. We know that we've given you a lot of strategies in the ‘How to’ area. So you can come up with another situation, perhaps, but it's not going to be that one, in any event.

Let's talk about some of the background and introduction to intellectual disabilities. 

Do you recognize any of the people on this picture? Certainly, person with an intellectual disability could be someone with Down syndrome, could be someone who has something called Fragile X, could be a variety of reasons why this person's IQ or intellectual quotient is just lower. And so as I think about something I'd love to introduce to you, especially as we head into these last few weeks, this would be a graphic that we think about at All Belong put together by one of our psychologists, Doug Bellman. And again, when we look at this particular item, I hope you remember those pictures that I showed you, when we were looking at our puzzle pieces; those strengths and weaknesses - remember, we talked about they could be green or pink in any of us, right? Green for those areas of gifting, pink for those hotspots or areas of challenge, and look at these words, because they should make you think of some of those pictures - could work with issues of attention or memory, higher order thinking, problem solving language, social interaction, motor functioning, that sequence of things - time and keeping track of things, spatial ordering, those Lego abilities, kinds of things. So again, when we're often talking about persons with an intellectual disability, we're saying you know what, higher order thinking might be a challenge. Again, I've met some that come up with very creative solutions to different things, but that might be an area that would be considered more pink. There also might be other areas of pink on here. 

It's possible that you could have an individual who also might find it difficult to hold a pencil; maybe the muscles are weaker for some reason. But remember, anytime there are pink areas, there will also be green areas. And we need to always make sure we're searching for the gifts that people bring. 

But I wanted to spend a little time talking about the history here in the U.S. as it relates to persons with intellectual disabilities. So I want to start you off at a place called Tainter. Iowa. I don't even think that you need to put this down as a destination, someplace you're dying to visit, although it's quite lovely, and I did drive through there a few years ago. This is where my father was born in 1926. 

He remembers in early 1930s, going to school in this one room schoolhouse in Tainter, a very, very small place, with an individual, a friend named Mike. He doesn't know a lot about Mike story, except that Mike was one of the classmates. Whenever the class was doing something with academics, Mike often had his own notebook. Dad doesn't know who prepared the notebook, what was in the notebook, but academics, Mike was doing something different. But he also was a great ballplayer. Everybody wanted Mike on their team, when they went out for break recess, noon time, to play on their team because he was so good at that. So dad went to school with Mike for years and just remembered him being part of the group, much like, I would guess, kids are almost included today. I said, Dad, you had the first inclusion program I've ever heard of in the United States. But that was in Tainter, Iowa. 

The next thing came, and dad remembers this too. He remembers the day that Mike was gone. And they had opened in Iowa something called a poor farm, same as other institutions, a place that they would put people with intellectual disabilities away from others, perhaps thinking that others people could catch what they had, perhaps thinking that there was some expertise in those buildings that would be helpful. But many of them proved to be far less helpful than people could even imagine. I have heard now, so many stories about that phase of life. Mike moved there, died there. I don't know if the poor farm in the Tainter, Iowa area was run well or not. But there were some stories that come out of there that were just atrocious. 

I know, I worked my way through college in what we called a group home here where there were like six individuals with intellectual disabilities that lived together in one house. And one of them was named Louise, and something about Louisa – she didn't have words to speak, but she had no hair anywhere on her body. There's nothing on her arms, no eyebrows, there was not one stitch of hair anywhere on her body. And one day, I said to the director there, I said, Do you know what's the deal with Louise in her hair? Is it part of her disability area? Is it genetic? What is it? She said, Oh, no, she was part of a particular institution in Michigan. And I said, Oh, clearly, I didn't understand what she was trying to communicate to me. So she expanded the story. 

When Louise was there, they had doctors that would test out medications, drugs on the clients, to see what the side effects were to determine whether those can be released or not. And although Louise didn't have cancer, they gave her medication that might be used to treat a cancer patient to see if it would be viable. Because this made all your hair fall out and stay out, they never released it into the public. It was a drug that was not allowed. This is so common to find stories of the day that they came in with bottle A and bottle B, and the staff had to give them - the variety of clients, these two bottles worth of stuff. Powerful things. And she lived with the side effects of that for her lifetime. Just horrific things. 

Some reporters went into those institutions; sort of burst them all apart. If you want to watch something about Willowbrook, pull it up on YouTube or something for your own enjoyment. That was one of those institutions. And they tell the story of what happened there; the poor ratio of staff to persons with intellectual disabilities treated far more like animals than anything else. And so the reporters got in there, sort of burst open this story. It was in the 70s, when pretty much these institutions were closed down because of all of the abuses that were taking place against the people who were living in them. And instead, what happened in the school side of things, in the living side of things, what happened is that people would be part of a separate school or a separate place to live like a group home. It wasn't, you know, the school in our area, pretty much every county has one in the U.S., there's a place for persons with intellectual disabilities to attend school. Many of them have been renovated in the last years because most of them were built in the late 70s, early 80s when this became an issue in the school side of things.

And then let me hasten to say, I have been aware of the church model sort of following some of these trends as well. It's, it's rare to find although, I've heard of one or two congregations that exist only of persons with some kind of a designated disability. They certainly have seen that separate idea but that's more rare, I would imagine. What tends to happen and what happened in the school setting but I see it more consistently in congregations, is there some kind of a school within a school, so all belong. It used to be called the Christian Learning Center, CLC network. The Christian Learning Center was a school within a school. We had three classrooms inside of this place called Seymour Christian School, and we had students with disabilities. They shared hallway space, they shared playground space, but this was basically its own school within that setting. 

I've seen that in congregations. You kind of have this church within a church. You have the Special Treasures Wing, whatever that might be, The Champions Club. These are sort of existing spaces for persons with disabilities inside a larger church offering. 

Another thing that school route went is to a concept called mainstreaming. In mainstreaming you have children who are part of sort of the separate space for persons with disabilities, and then they become visitors. So I remember doing that when I was first teaching; I've been doing this a while, right? And I would go in and say, You know what, Joaquin is really good in sports. Could he join your third grade PE class. Or, can we come and be part of a preschool setting? All come with three kids; could we join your free play time? 

So I was brokering deals with all these teachers in the building, to see if we could come and be visitors in that space. But visit is exactly right. The child was owned by that separate classroom, but we would be visitors for a space of time. Now it was always clear who was in charge of that student whenever there was a misbehavior because right away would be, Come and get your student, Barb. So again, that student belonged to me.

I see this also happening. I was visiting a church the other day, and they were sort of training a particular child to be part of that larger setting. And so they had a room setup, but then this person would go and be visiting when there was worship going on, or when something was happening. So, it reminded me of that mainstreaming model, owned by sort of the special class, but making trips into some other environments. 

But then our director at the Christian Learning Center heard about this thing called inclusive education. And back in 1989, which was very rare at that time to even be thinking this way, we started our first inclusion program, and I had the joy of starting that program, at Zealand Christian. And the difference here is that, where I owned the students as a special Ed teacher in the mainstreaming model, in this model, that student was owned by the general education teacher. So this child was a second grader, was an eighth grader, was a preschooler, they were not a visitor but a resident with full rights in those places, so that that place of ownership changed. 

I was part of that child's life but I was not the teacher to this child. I helped facilitate and make things work. I was very much there and I was brainstorming and actually being part of that group for several seasons of the day. But my ownership was not the primary owner of that student. This is painfully clear to me as one of the students had fallen and gotten hurt on the playground. And across from me was the second grade teacher and I was here by my door, as a facilitator of this inclusion program. And so here comes a student in between two friends from second grade. And I've got my arms out, and the student walk right past me and into the arms of his teacher, his second grade teacher. So again, ownership.  Child's hurt; Mr. Sneller is going to fix it, not Mrs. Newman. So again, that ownership is probably one of the key pieces of inclusion. 

But I think also a big part of inclusion is that idea of friendships. It doesn't just work to throw people in one space and expect things to just work out. Sometimes you got to work at that a little bit preparing, and being part of that. So we work hard at promoting friendships. We have circle of friends, we have opportunities for people to talk about the gifts that everybody brings, and to brainstorm about the challenges that might happen in that place. So there are a lot of friendships.

I, my son again, grew up at Zeeland Christian School and was married a few years ago. And one of his, one of the people who stood up for him in his wedding was his friend Ryan, who went to school with John all through school who happens to have Down syndrome. Again, John did think twice. He was thinking of some of his best friends and Ryan is one of his best friends. And so, again, these friendships have, in many cases, and you'll hear more stories about this, just blossomed into lifelong friendships. 

I was doing a training in Colorado and one of the former students from Zealand Christian was a teacher there and he said, Oh, you’ll never guess who I just got done texting. Well, it was one of his friends from class at Zealand Christian. and they just have always loved video gaming. And so they would compare notes as they were texting each other about video games. And again, it was just the sort of normal natural thing. My son John would have been offended had some camera crew showed up to film his wedding because here's the person with Down syndrome standing up in his wedding. No, he got his friends to stand up and Ryan is one of his friends. So again, it's just a normal part of doing life. Inclusion can be this gift.

But just a warning, and those work from Dr. Eric Carter, who's at Vanderbilt University here in the U.S. He drew out what I think is this wonderful picture, but I want to put a little explanation with it. So if you start at that end on exclusion and I want to get to this word called belonging. What they found is that Yep, exclusion - so you know, the poor farm, the institution. Segregation - well, now we've got a separate school. Integration - here we've got our school within a school, right? But there's not a lot of togetherness happening there. Inclusion - now we've got a lot of togetherness, but that sort of felt wrong in some degree, and that inclusion… yeah, there's a, there's a group, but it's inviting somebody else in. Does it sound like that to you? Like I own this church and I'm inviting in this person with a disability. That doesn't feel right. And people can be included, they can get in, but that doesn't necessarily mean there are a lot of relationships happening. 

And so Dr. Carter drew this, also, within the context of inclusion. Is there a place of belonging? The truth is, we should all have these colors on us because we're all combinations of gifts and needs, are we not? Everybody is the same within this environment. And we form relationships with one another. There are places of belonging, relational places, and I just think this is a beautiful picture. 

I think many times what I've experienced at Zeeland Christian and the inclusion program is that there was excellent belonging that was part of that throughout the years. But I knew I do know that in some situations people use the word inclusion. That doesn't necessarily mean that everybody is a resident with full rights. It doesn't necessarily mean that everybody is part of the team, and that there's a place of belonging for everybody. Sometimes this still feels a little bit like a contrived setting and while they're in, but that doesn't mean they're together. 

Dr. John Swinton, who we'll hear from again when we talk about dementia, made this great comment. He said, You know, it's great to be included, it's great to be part of the group, but when you belong, people miss you when you're not there. I think that's a beautiful delineation. And so again, as we seek to do things inclusively, we always want to make sure we're creating places of belonging for each one, who's part of that community. I want a place to belong. My friend, my son's friend Ryan wants place to belong. We have the same goals in that. 

So in any event, I thought that this would be a helpful picture. We're certainly at a different place now. Still, a school wise, you can find, you know, different places, the mainstreaming might still be happening, we still have a separate school where we live for persons who might need that. There are choices within the setting. But I think most of us have landed on that place of being, of inclusion, and even more importantly, belonging, of being part of the same community; equal members, equal partnerships within that place. So it's a talk about that word, inclusion or belonging, I hope that gives you a good visual to think of that because there's belonging and relationship and friendship and being part of that group all together, not saying, Oh, that person has a disability, that person has a disability. 

In fact, that was often funny when people would come to visit Zealand Christian, they would look at me, and they would say, so who's included in the school? And I would just smile, I'd say, think of what you just asked. You just asked who is included, and the answer to that would be everybody. So again, sometimes in inclusion, we're saying, Oh, but that person's included, that person's included. This model of belonging says we're all included. We're all in this school; we're all in this congregation; we're all in this space youth group together, and we can build those relationships within it. 

So hope that history was helpful. Again, a reminder, if you have an area of pink, you certainly are going to find those areas of green in individuals. We want to make sure that we use those well. 

So when we get back, we're going to go ahead and talk about some strategies that we might want to think about as you as a congregation would be including a child or an adult with an intellectual disability. I hope that history was helpful. 

I I'm standing here wondering what your experience has been in your country, with persons with intellectual disability. Some of that may go back to that cultural topic we talked about several weeks ago -  are there are there cultural words that tie into that model? I know in one country, one of the highest goals was to have enough money to purchase a spot in what I would have called an institution. But that was, again, one of the prizes of this particular culture and community. And here that would have been looked at differently, because we have different values in that. So, I'm curious to learn. I hope though, that as we think about congregations, we can go back to that beautiful model of Eric Carter, where oops, where we're talking about that shift to say, we want to have each of us a place of belonging, a place for relationships, because that's just a delight. 

So, enjoy a short break, a couple of days’ break, whatever is working for you as you're working through the material of this class. And join me again as we think about some strategies to use with persons with intellectual disability.