#052 Mindsets and expectations are required for the good things in life.

Genia:
Welcome to the Good Things in Life, the podcast that helps us support our kids with intellectual disabilities to build good inclusive lives at home, at school and in the community. I’m your host Genia Stephen. I’m a parent and I’m a sibling. I’ve been learning and living the good things in life and the struggles in life with people with disabilities in their families for my whole life. I’m so excited that you’re here. Thank you. Today I’m excited to share with you some backstage content from Darcy Elks. Darcy is a parent, an educator and a presenter known around the world for her work supporting families to build good lives with their loved ones with disability. Darcy and I are currently building a new program for you and the recording I’m going to share with you today is from a planning session that was offered to only a few of our Inclusion Academy founding members as we work on our new course content.

Genia:
It’s so important though that I felt like I just had to share it with you today. I didn’t want to wait. Darcy’s presenting about the power of mindsets and expectations and it’s just hugely powering and hugely powerful in helping us to support our loved ones to create a good positive lives. And it’s important that we think about it because if we just wait and kind of ride on the coattails of the mindset and expectations that society has for our sons and daughters with intellectual disabilities, it’s not going to lead to the good things in life. So I will let Darcy take it away.

Darcy:
Okay. So last time we talked about you know, the importance of dreams and those dreams leading to planning ahead. So now we’ll move forward with this first element needed to plan ahead and that is positive mindsets and expectancies. So our mindsets are really important because those mindsets lead to action. And our beliefs and mindsets are impacted by many things. One would be our experiences growing up. Another one would just be our general experiences not only as a child but also as an adult and also as a parent. And thirdly would be the culture that we live within because the culture teaches us many beliefs and mindsets that oftentimes we don’t even know that we’ve learned. So when I think about my own life I went to a school where there were children with disabilities in the school, but they were on a separate hallway and a separate classroom. And they had a completely different schedule to the rest of the students in the school.

Darcy:
So I vividly remember never seeing those students and actually wondering who was in those classrooms and trying to step out of line as we walked through the hallways as a class and peek in the window and to try to see who was in those classrooms. And then I do have a memory of seeing the students from the special ed classes. There were only two classes out on the playground all by themselves at a time when none of the other children were out on the playground. And then seeing them in the cafeteria when there were no other students in the cafeteria. And it was interesting when I was reflecting on that memory as an adult because I grew up then believing that children with disabilities needed to be educated in special classrooms you know, doing things special things that I wasn’t doing in my classrooms. And that they really could not be with the general student population.

Darcy:
And I went on as a young adult to study teaching and then I went into special education and I’m telling you when they told me students like that need to be in special classes with special people, special teachers and so forth, I believed it. It, it reinforced a mindset that had been taught to me as a child that I didn’t even know that I had learned. And so you know, it was quite a journey for me changing my mindset. I fortunately was helped by students and families who challenged that belief and helped me to see things differently. And then, you know, I completely changed from what I had, had formally believed. So our beliefs and mindsets are really important. And I have found as a mom that it has been helpful to me and my husband, we’ve done this together to actually write out our beliefs and to go back and check them every, every once in, once in a while because we know that our beliefs and our mindsets will come out in our actions.

Darcy:
So just an example of that, and you could probably think of some examples of your own. You know, that I have met parents and that I so admired and who really had very powerful positive mindsets about their family member’s potential and the possibility for the family member to have a, you know, a wonderful life. And those families ended up you know, assisting their family member to be in valued roles and typical mainstream of life. So I could see how their mindset translated into action. I’ve also met a lot of families who love their family member with a disability, have a, you know, really see the family members being part of their family, but also see their family members being a bit different from other people, the age of, the age of the family member. So I have a friend who has three children and they’re actually adult children now.

Darcy:
They’re in their early twenties. And her son with Down syndrome is a really valued member of that family. But my friend sees him as being a little bit different from his brothers, maybe not quite as capable or needing different kinds of assistance. You know, the, the, and, and teaching and so forth that her, her other children don’t need. So it’s interesting. The son with a disability, he is in a program now, he’s 19 years old and he’s in a program, a day program, which really isn’t teaching him much in terms of helping him to move on in life and have a job. Whereas her other son who’s 20 years old, he’s followed a much more typical path of you know, finishing high school working, going to college and exploring what he wants, you know, to do for his life. And so I look at those two different experiences of two young men who are very close in age and I think that’s due, their difference in experiences due to the mindset of the, of the family.

Darcy:
And then of course there are some examples where families have been convinced either by the culture or maybe by professionals, you know, that their family member doesn’t really have a whole lot of potential. And so, you know, then in that case, lots of times people end up in a warehouse, in warehouse. But what I mean by that is just in program after program after program where it may be a pleasant environment but where there’s not much challenge, there’s not much expectation. So let’s move to some positive, examples of positive mindsets and expectancies. I have met families who have a “can do” mindset. And I just think that that is a beautiful mindset to have because then instead of saying you know, “We can’t do it”, we say, “We can do it.” We just have to figure out how we would do it.

Darcy:
And you know, have a really nice example of put this wrapping picture up of an article that talks about a mom, oh, well, actually a family who had very high expectations for their son who has very significant disabilities. And the article’s called Take Risks, Ride the River. And so the, that’s just the mom wrote this article about how the family got ready for the trip and then they, they started and they had a wonderful first day riding the, the river and pulling the raft up at the end of the day and setting up camp, you know. And so she just went on describing a typical rafting trip. And then she said at the end of the, the last day of the trip, they had a particularly interesting experience where they saw there were some other people who were on the river in a raft using wheelchairs and their son uses a wheelchair. And so she had this interchange, exchange I mean, with a leader from the, from the group, the group trip

Darcy:
And the leader came up and said to, Wilson is the young man who’s the family member who uses a wheelchair. And so the leader from the other group that was a group that did you know, special rafting trips just for people with disabilities. So the leader came over and she said, “Oh,” to Wilson’s mother. “Oh, Do you guys do trips for people with disabilities too?” And Wilson’s mother said, “Well, no, actually this is a family trip.” And so then the leaders started to ask all kinds of questions and she said, “Well, how would you bring your son on such a trip? For seven days you’ve been on the river? We have people with us who have very significant disabilities and they would only be able to take a four hour trip.” And then she asked, you know, “How did your son eat on the river? Because we serve people who need a lot of assistance eating.”

Darcy:
And Wilson’s mother said, “Well e used Wilson’s gastronomy tube, we washed the syringes with all the other dishes using boiled river water and Clorox.” And then she said, “Well, what about physical therapy? Well, you were on the river. Our, our, he folks that we serve need, you know physical therapy.” So Wilson’s mother said, “Well, you know, floating, we didn’t have physical therapy for a whole week, but we’d swimming, floating with a life jacket, stretching out in a hot tube of the raft, bumping through the rapids on a big cousin’s lap. And if you were to sunburn, you might get a lotion massage in the evening.” And the conversation went on and on. And so just thought it was a very good example of how Wilson’s family had a mindset of we’re going on a family vacation and Wilson is part of the family and he’s coming and we can do this. Whereas the leader of the quote, “special rafting trips” had a completely different mindset.

Darcy:
Also a positive mindset about you know, being aware of you know, the capacities and even the gifts and contributions that your family member can make. It’s interesting how many times when we get together to do some visioning exercises, if people, family members have been sort of conditioned to focus on what the impairment is or what the incapacity is rather than on people’s capacity and their gifts and contribution. And sometimes, you know, when I raise that with families and say, “Well, you know, what are the gifts that your family member brings to you, to other people, to the, the world in general?” It’s a question that they’ve never really considered before. So, but a positive mindset about gifts and contributions leads to a bigger and more positive vision. I believe. Another thing to think about is that a positive expectancy would be to think about age appropriateness.

Darcy:
So to think in terms of you know, having expectancy that someone may need adaptations and accommodations, but that people can participate in a way that’s appropriate for their age. And so this is something I’ll come back to a little bit later in the presentation because there seems to be quite a bit of confusion about it. And having expectancies is it just like you, you, families would have for any of their children is that their family member with a disability in fact can have a good life and should have opportunities to experience a richful, meaningful life. And then lastly, just another area to think about, and I think I raised this in the last presentation is the importance of believing and embracing positive mindset about the competence of people in our community. So, so many times I think families are, are again conditioned to think that only people who have quote “special training” know how to support their family member and would be, you know, helpful to their family member.

Darcy:
And that I have found that kind of mindset leads to people not thinking about their family member, you know, being part of the, of the community. So an exercise that we’re not going to take time to do now but I would encourage you to do is to write down some of your beliefs and some of your expectations. And my husband and I have found that an easy way to do that to get us started because it’s kind of, it’s a pretty big area as we start our statements with “We believe that…” And then we write down, you know, our beliefs about our daughter’s potential about the possibilities for her life, about her gifts, her talents, what she brings to people and so forth.

Genia:
On January 22nd, 2020, Candy Motzek is offering Good Things in Life families a workshop on creating a powerful digital vision board to help keep us focused on our positive mindsets and expectations in 2020. As a favor to me and because she really believes in the work that we’re doing here together as families, Candy is offering this at a massive discount to her regular workshop piece. As part of the workshop, I’ll be offering a bonus training on how to create a positive vision for the life of your daughter or son with an intellectual disability. And I’ll be providing access to the extended version of the Setting Goals That Matter guide. And you’ll have access to a private Facebook group for a week after Candy’s workshop so that you can have all your questions answered. They say that hindsight is 2020, but this workshop gives you the opportunity to see clearly as you look towards the future. Don’t wait for hindsight. Register now by going to goodthingsinlife.org/visionboard. That’s V-I-S-I-O-N B-O-A-R-D, vision board.

Darcy:
All right, so moving on. The second piece that is a piece of information that’s very important when you are thinking about planning ahead and developing a vision of a good life is understanding devaluation. So this is a really hard topic. It’s not a pleasant topic, but I have found as a parent that it’s really important to understand some of the forces of devaluation that exist within our society so that we are able to counteract them. And that is you know, something I want to emphasize is that we as family have found, this was information that was shared with us when Mary was very young that it was it was kind of hard to hear. But with understanding it and being clear about it, we’ve been able to you know I think protect Mary as well as to avoid some of the devaluation that she might’ve experienced had we not understood this.

Darcy:
So first of all, what do I mean by devaluation? Well I’m talking about you know, the attributing of low or even no value to a person or a group of people by another person or group of people usually on the basis of some characteristic that the person or the group has a difference that is perceived in a negative way. So this is not, when I use that word devaluation, I want to be clear here. I am not talking about the value of your family member in your eyes. Okay. I am talking about and I, and I’m not talking about the intrinsic value of a human being. I’m talking here, I’m just about a societal process. Okay. Of, that ends up in devaluing a person, seeing a person as not being as valuable as others, not quite as worthwhile as others, not quite as important as other people.

Darcy:
It is a process. Okay. And when that process happens, there are a number of consequences to the person. When someone as is seen as not as valuable, as not as important as a second class citizen, maybe not even a citizen at all. Some of the consequences of that is the following. So society does devalue certain qualities and conditions. So just explain the process a little bit more. Okay. And in order to figure out what society devalues, we need to look at what they, what society values. Okay. And when people are devalued because they embodied the opposite of what is valued, then inevitably what happens is they become equated. Their identity becomes equated with their impairment or their identity gets reduced to that of their impairment. So much so that sometimes people are referred to simply as an impairment.

Darcy:
So here’s a, here’s a list of some examples. And I’ll tell you a story from the one that behaviors how that got up there. I was visiting a special education classroom and I in conversation with the teacher said, you know, “How many students do you have here?” And she said “Well, I have nine students and five behaviors.” So I knew that she had 14 students all together, it’s like, I wondered what did she mean? And it turns out the students she referred to as behaviors were the students with behaviors that were challenging to her. And so she literally had reduced their identity to that, of being a behavior. And of course, that’s very devaluing, right? When people reduce your identity to being an impairment, then some pretty hurtful consequences come about. First one being they then do not need you, your whole identity.

Darcy:
Secondly, they’re not thinking about your gifts and your talents and your abilities rather than focusing on the impairment. And thirdly, they’ll probably have all kinds of ideas about what will and will not happen for you as a result of you know, the impairment that you have. So this teacher was not thinking about this, the behaviors of the students with challenging behaviors in terms of all of the possibilities for their education that would make their education a good education, rather, she was pretty focused on trying to control the behaviors or stop the behaviors. Okay. So people who are perceived and as identified with the qualities that are, are devalued, become devalued, then they’re rejected. Okay. And cast into devalued roles. So in contrast to the valued roles that we often or the people seek in society. So being, being a citizen thinking of you know, when you’re in your school life.

Darcy:
So being a student, as a member of the student body perhaps being a member of the chorus, being a member of the drama club being a soccer player, being a member of the baseball team being a friend and so on and so forth. In contrast to those rules you get in, you get cast when you’re devalued into a negative roles. And lastly, this leads then to all sorts of discrimination abuse and maybe even death making. And that is a term that Dr. Wolfensberger developed to speak of the hastening of people’s death or the shortening of their life. So an example would be people not getting the adequate medical treatment that they need as a result of some discriminatory attitudes.

Darcy:
Okay. So these things are pretty hard to think about. And we as a family, I will say now, how have we practically use these ideas? We don’t dwell on them. If there’s anything that we dwell on, we dwell on the positive, but we’re aware of them. Because we found that if we’re conscious of these, that we know these experiences are likely at some point in our daughter’s life to happen in different ways, we, if we’re aware of them, then we are able to intervene and stop them oftentimes. So for example when Mary was in school, when she was in elementary school, in grade two, she had a teacher’s assistant who was very nice and she was very kind, but she treated Mary like she was a preschooler. And we knew them, so for example, they would go to the library together and the aide would find books that were appropriate for preschoolers, not for a second grader.

Darcy:
And then Mary, you know, she would sit with Mary in the library and read those books. So she’d had Mary walking down the hallway carrying the preschool books. And while that may not seem like a big deal, we knew that that was going to reinforce an image of Mary being younger than she was. And we were very you know committed to Mary being seen as a second grader, not a preschooler. So we just explained that to the aide and she understood, she said, “Oh my gosh, I’m sorry, I never thought of that.” And you know, something that small could have made a big difference. But understanding this, we were able to change it. You know, the times when Mary was in school or the school wanted her to be in the special education classes that we’re a part in a way we were aware of that is a dynamic that oftentimes people get distanced.

Darcy:
And so we advocated for her to be included in regular classes with special education assistants. So it wasn’t that we just wanted her to be sitting in regular classes. We wanted her to be learning too, when we wanted her to be learning from her typical peers. Now, you know, because we knew that this was a force, this distancing force was likely to be in her life, we, we could address it. And hasn’t always been easy, but we’ve always found people are pretty open in saying, “Oh, of course. You want Mary to have what the other students in class have. You want her to have a typical experience and we can help you figure that out, you know, with, but with the support that she needs in order to really participate.

Genia:
Mindsets and expectancies are more powerful than we think. We can use this power for good or we can let the power of our mindsets and expectations be influenced negatively by society. It really is I have to add. If you want to explore how you can up your game and harness the power of your positive mindset and expectations, then join me with Candy Motzek on January 22nd for our workshop on using vision boards as a tool for positive change. Join by going to goodthingsinlife.org/visionboard.