Intro: I quickly figured out from the responses of many people to our daughter, my daughter was going to be subjected to some pretty low expectations which could lead to some real limitations in her life. And it was at that point that I realized how important it was to have a really big vision.
Genia: Welcome to the good things in life podcast. My name is Genia Stephen. You were just listening to Darcy Elks. Darcy is an educator, a consultant, an evaluator of services, and an advocate on behalf of people with disabilities. Darcy is also a parent of three children, one of whom has an intellectual disability. Darcy’s here to talk to us about vision. What is it and why does it matter so much. Thank you so much, Darcy, for talking to me today. We’ve known each other for a very long time and I’m really glad to have you on today to talk about vision and why vision is important and the role that vision can play in helping people to achieve a good life. So thank you for, for coming to speak and welcome.
Darcy: You’re welcome. And I’m happy to be here.
Genia: So Darcy, I wonder if you could start by telling us a little bit about how and why you first started thinking about vision.
Darcy: I really started thinking about vision and the importance of vision when I had my first child. Well, we have three children. They’re all adults now and our first child was born with an intellectual disability and of course being our first child, we were so enraptured with our baby. And I remember after I bought her home, she was only days old, my husband and I standing there together holding her and just thinking about what we wanted in her life. Now at that point, we would not have called it a vision. But it was pretty typical of what parents do. You know, with all of their children when they’re little. So we, we were, the thoughts that were running through our head were things like we hope our daughter has a great life. That she has a wonderful education. That she figures out what her interests are and is able to pursue them.
Darcy: That she figures out what she’s good at and is able to find places where she can use her gifts, that she’ll have lots of friends, that she will find a lover or a partner, that she’ll travel maybe if she wants to do that and so forth. And so right then and there within the first three years or first three days of Mary’s life, we were thinking about vision and it was just very kind of typical of, as I said, you know, the way most parents would be thinking about their children’s lives. Now as time went on and it didn’t take too long for us to start to realize though that it was pretty important that we have a vision for our daughter. Because when we were visiting other members of the family, even some friends, neighbors and even, you know, the doctor, regular kinds of checkups and so forth, we started to hear some things that were really troubling to us. Things like, well, you know, we’ll have to keep an eye on her. We don’t know how well she’ll be developing. And uh, right now you maybe should start thinking about where she’ll go to school. And you know, neighbors were saying, you know, a really good special education school that Mary could go to and we realized that because she has an obvious disability, there were all kinds of things that people were thinking about from a very early age about what she would not be able to do and where she belonged, which was really very different from our vision that Mary would have a typical life with the support that she needed within the context of her family or neighborhood school and your community. And so at that point that we realized that we as parents really needed to have a very clear vision.
Genia: So when you say you needed to have a clear vision, what do you mean by that? What is a vision?
Darcy: So a vision is really thinking clearly about what it is that you want for your life or that you want to help someone else have for their life. And oftentimes with the vision, you have to imagine something that does not yet exist. I mean, there we were. Mary was very young. We were imagining what her life was going to be like as she went through school. And imagining the possibilities for her after she left school and moved into her adult life. So vision is really imagining what does not yet exist. It’s something that requires imagination.
Genia: So why? Why is this so important? Why is it important for people, for parents particularly, that have children with an intellectual disability or any impairment to have a vision for their child?
Darcy: Well, okay. I think there are a number of reasons why vision is important. First of all, it’s a motivating force. So we found as a family that when we are clear about the vision, we were really motivated for Mary to have a typical life. And by the way, I would say that another part of visioning that was very helpful for us is we also thought about what we don’t want. And that helped us then to really focus on what we did want for our daughter. So we did not want our daughter to be going to a different school from her brother and sister. We did not want our daughter to spend her life in special classes. We didn’t want our daughter to, as a young adult, be put into a specialized day program. What we wanted, what we imagined, is that she would have a typical life just as her brothers and sisters. And so that vision, you asked why is it important? That vision really motivated us and helped us in terms of our advocacy. In fact, I say the vision really helped us to say no to things that weren’t in line with it and yes to things that were. So, for example, our daughter was always fully included in regular classes in school with the systems so that she could be successful in the classes and learn the way all of the students were expected to learn. And so when she was going into grade six, and she’s had a very successful experience in the lower grades, in grade six the school official sat down with us and said, well, now it’s time for Mary to go into a specialized class called the lifestyles class, which is just for students with intellectual disabilities.
Darcy: And when we started to question that, we were told that really marry will not be able to keep up with other students in grade six and it will only get harder as she went through the higher grades and so now was the best time for her to move into the life skills class where there would be very few academic endeavours and will be mostly focused on her developing her life skills. And when we asked what life skills, we were told, well Mary would learn things like how, you know, brushing her teeth, tying her shoes. Now these were all things that Mary already had learned so we couldn’t see much point in her being in a class like this. And our vision, really when we thought about what would that lead to for Mary, it would mean that she would miss out on a lot of the typical learnings and experiences that students are age would be having through high school, which then put her in a more limited position as she moved into life after high school.
Darcy: So because we have that vision of her having a full life and you know, I’ve already talked about kind of what the vision was, we were empowered. Why is vision so critical? We were empowered to say no options that were being presented to us and we had a burning passion to say yes to inclusive education even though we knew that that road was going to become more difficult throughout school. So a vision really is a motivating force and it empowers families to really push the agenda of a good, full, meaningful, inclusive life for their family members. One of the things that has been wonderful of course, when Mary was younger, we held the vision for her, but as she grew she developed her own vision, which has been very exciting and she’s quite strong in being clear about what she wants now as a young adult. And so I guess that’s another part that’s very critical with having a vision for all of us in life. For anybody in life, vision is important. And Mary learned as she was going through her younger years about having a vision and speaking up for herself. And so now as an adult, you know, she, she has a lot of capacity to do that. Her vision may not agree with ours, but that’s great, isn’t it?
Genia: Yeah. So I have two thoughts. I’m listening to, to your description about why vision matters. So one is it is a question and that question is around how vision can help to motivate and empower families when the options that are being offered to them are potentially to teach their child something that their child can’t do. So you were saying that you were clear about not saying yes to or saying no to the life skills class and saying yes to inclusive education. Partially because Mary already had those life skills. So how you think that vision can help to motivate and empower parents when, when sometimes the things that they are saying no to are things that they can see might be beneficial to their child, but are inconsistent with the vision.
Darcy: Well, we always tried to figure out if there were things that our daughter needed that weren’t going to be met within inclusive education, we try to figure out how those things could be met in the most typical way possible. So I don’t know. I could think about Mary’s life now and answering the question. So part of the vision obviously for Mary is that she would work and she wants to work and this is proven to be quite a challenge. Mary has always worked, but she does need quite a bit of support to work and so there had been times that people have said, well, it might be better if Mary was in a day program and she would get more… She’d feel more comfortable and she’d have the support from trained staff. And she would have support from train staffs, but she wouldn’t really have an opportunity to be out doing the things that people her age are doing. So we have worked very hard. We’ve held onto the vision that Mary would still be able to work because that has now become her vision and we’ve just been very fortunate. We’ve found an organization that would work with us to provide the support for Mary to do what she can do within the job situation.
Genia: My second thought was just really at the end there and you just reiterated it. The idea that the vision that you and the rest of Mary’s family had for Mary didn’t, over her life, supersede the vision that Mary chose for herself. I guess I’m just getting at that idea of, you know, if we create a vision for our child, does that mean we are then imposing on them what we think their life should be like as opposed to listening to what they want for their life and allowing them or supporting them to make choices.
Darcy: Right. And, you know, we have to say we’re pretty excited that Mary can clearly let us know. It’s not always with words. Sometimes it’s with actions – what she does want and what she doesn’t want. And that was part of our vision that she would be able to express, not only express herself, but have a sense of what she wanted and what she didn’t want. That happens with all children as they grow up. They become, they have their own ideas. Right? And that’s a real part of growing up. I guess, you know, the other thing I’d like to say in terms of, you know, really developing a vision is we’ve always looked at it from the perspective of Mary’s age and what are her typical peers doing at any particular age and making sure that the opportunity to experience the same kinds of things that her peers are experiencing with the kind of support that could be from other peers or could be more specialized support so that she’s really getting a broad base of lots of different life experiences. So as she goes through life, she can draw from these experiences and figure out with assistance, like we all need assistance with this, what she wants to do, what she doesn’t want to do that’s relevant for where she wants to live, who she wants to spend time with, what kind of work she would like to do, what she wants to do in her recreational life and her spiritual life and so forth.
Genia: So if, if parents are trying to think about creating a vision for their child, where, where do they start or where does it come from? You know, it’s, it’s one thing to say, you know, I want my child to have a, a life full of good things, but it’s quite another I think to figure out how to really get clear about your vision and also to become clear about what you do and what you don’t want. Where do you start?
Darcy: Okay. One recommendation I would have here is to have opportunities to be with other families who in fact are thinking about vision and really yearning for their family member to have a full, meaningful and inclusive life. For us, it was just an amazing opportunity when Mary was only 18 months old and we were invited to a conference in Alberta, Canada that was put on by Inclusion, Alberta. And we had the opportunity to meet families, to meet people with disabilities who were adults and we just heard amazing stories that were all true stories and examples of people living really rich full lives. And so that was a big gift to us to open our thinking even bigger than it had been. So I would say having contact with people who are further ahead than you on the journey. Meeting people with disabilities who are leading very full lives.
Darcy: That would be one very important place to begin. Secondly, when thinking about the vision, I do think it is really helpful to really follow your heart and write down what you don’t want and this ends up being mostly what none of us want for our lives. For Mary, some of the things we’ve written down, which you know as I said, it’s pretty typical, is we don’t want Mary to be lonely. Mary has told us she doesn’t want to be bossed around, uh, we don’t want Mary to be, you know, in a situation where she’s isolated and only surrounded by paid people in her life. So those are just some examples, Genia and then then we thought about, well, if that’s what we don’t want, what are the experiences that we need to, or what are the things that we need to avoid that would lead to that, right?
Darcy: So for we in terms of the vision, what we do want and what Mary wants is to have lots of people in her life. Some of those people would be paid people but also more relationships, with her brother and sister, relationships with friends, with and without disabilities, knowing neighbors and so forth. So if that’s what we want, we could also think about what are the experiences that Mary needs in order to lead to that vision. So I guess what I’m saying and the answer to your question, I think sometimes for people, it’s easier to start with what they don’t want. Then the experiences to avoid. And then to move to what you do want and what experiences would lead to what you want. As well, this has I think, been very helpful for us. When we think about what do we want, we start from a place of what happens for typical peers that the society offers that is good. That’s what we start thinking about with Mary. So we’re not thinking disability focused. We’re thinking about the society, the culture and what’s offered to Mary’s peers that is considered to be part of the good life. And so when we’re thinking about a vision, we take that and also think about Mary, her interests and so forth and put that together. And that’s how we develop a vision.
Genia: So you just mentioned the good life. What do you mean by that?
Darcy: Well, when we think about the good life, when we’re thinking about, you know, what are the, what are the opportunities that are out there? Mary is 26 years old. Okay. So what are the opportunities that are available in our culture that most 26 year olds would think, gee, this, this would be something that’d be really cool or that I’d be interested in or that’s important in life. So you know, for most 26 year olds work is a pretty big piece of it and getting a paycheck. So you know, that that’s pretty fundamental, isn’t it? Most 26 year olds, you know, they’re thinking about their social life. Some 26 year olds are married, right? So you would be thinking about, what are all the potential options that would be considered the good life by peers? And then of course taking that and Mary choosing from that, what is a good fit with her personality, identity and dreams and hopes.
Genia: So when you’re thinking about a vision for Mary or when you’re supporting Mary to think about her vision for her own life, do you take into consideration in creating that vision, the sort of obstacles and barriers? Do you try to make this vision something that’s sort of reasonable given Mary’s challenges and the obstacles that society places in front of her?
Darcy: For us anyway and for Mary that’s happened along the way. So when we’re developing the vision, we don’t think about the obstacles because we have found that once you start thinking about the “can’ts”, why this can’t happen, then the conversation starts focusing on the obstacles, the barriers and so forth, and we never get to the vision. Once the vision is developed and Mary starts entering into that vision and we encounter the obstacles and barriers, then of course we address them and try to figure out, well how can this be handled? But when we’re doing the brainstorming session, developing the vision, we’ve just found that it can be very… it can get you off track pretty easily if you start listing all the obstacles.
Genia: So you know, I think some people struggle with not wanting to set unrealistic expectations because they worry that there’ll be, that the disappointment will be painful, either for themselves or for their child or for both. Which is, which is a fair consideration because that disappointment can be really painful when people don’t achieve what they hope to achieve. But that’s not the approach that you’re taking.
Darcy: No, because I mean, no matter what you do, high expectations, low expectations, right? There’s going to be pain in life. That’s just life, isn’t it? And we have always felt like, you know, there may be things that Mary wants to do that honestly, reasonably she tries and she’s not able to do it and that’s painful. However, you know, we look at our other two kids and that’s a big part of their life as well. So everybody has to struggle with that. And I think, you know, trying to protect your child from that is not, it’s part of life, you know. So when you go through those disappointments, you know, being able to get through them together as a family or with your friends, I think it’s important that you have those people to help you to get through those times.
Genia: So Darcy, when, when I’ve heard you speak about vision previously, I’ve heard you talk about metaphors for vision and metaphors for helping to understand how vision is useful throughout somebody’s life. I wondered if you could speak about that a little bit.
Darcy: Yes, some of the metaphors that I think have been helpful to us are metaphors having to do with navigation. Because, I think about vision as being a real help when you’re trying to navigate life. And again, I think that’s relevant for anybody. So some of the metaphors, one would be that vision is like the North Star. The North Star gives us the destination, right? And we can gauge things, a gauge or direction by keeping our eyes on that North Star. So we found as a family, vision from a very early age helped us to keep our eyes on the destination of where we were heading. And Mary, as an adult now, you know, has a pretty clear idea of her destination. She’s got an idea of her north star. She might not call it north star, but she has a sense of where she’s headed as well.
Darcy: Another metaphor that we found to be really useful is that vision can be like a telescope. We use a telescope to see far away. Right? And so it was very helpful, um, you know, throughout our lives, and I’m thinking about this for myself right now, you know, to see far away, to think about, well, what will life be like in five years. What would I like life to be like in five years? Another metaphor is vision is like a compass for the journey. So inevitably as you go through life, there will be all kinds of options that get presented to you, decisions that you have to make. And certainly that has been true for Mary. As her parents when she was younger and we were making a lot of the decisions and sometimes even now with Mary, we are helping her to make decisions. We could look at the things that are being proposed to us or proposed to our daughter and help her to think about, well, okay, if I make this choice, will it bring me closer to what I want in my life three years from now?
Darcy: Or will it take me in the opposite direction? So the vision can be very clarifying when it comes to making decisions. Whether you are doing that on behalf of your family member, with your family member or advising your family member in terms of making decisions. And lastly, a metaphor that I use, for vision is it’s a real anchor for the turbulent times in life. Which again, this is relevant for all of us. All of us go through turbulent times and a vision can be that anchor that helps us to not lose our mooring. So you know, I remember sometimes in Mary’s education we had some very tough times, tough teachers, a lot of angst and even rejection. And having and holding onto the vision really… I mentioned empowerment previously? It empowered us to get through those times. I mean, I’ll just give one example.
Darcy: Grade nine was a very hard year for Mary and for us as well and my husband and I had done all of the advocacy that we knew. We had other people helping us and nothing was changing and I remember feeling pretty desperate and standing at the kitchen sink doing dishes and lifting up the the drain and watching the water go down the drain. And I, it suddenly it occurred to me that’s exactly what I feel like all my strength, my courage, my whole, you know, was being so challenged and I felt like at that moment I could either let my, you know, my hope, my courage, my vision, you know, that we had for Mary’s life go down the drain. Or I could go back to the vision and say, okay, school, we don’t know what we’re going to do about that right now because we can’t figure it out.
Darcy: Eventually it’s going to work itself out. We’ll keep thinking about it. Looking for people who can assist. But in the meantime, is there another part of the vision that we could focus on? And you know, Mary was, had just turned 15 at that point and another part of her vision was that she wanted to work. And so we said, okay, that’s what we’re going to work on. And Mary did start her first job. It was a very part time job, but you know, pretty typical for a teenager. And her life, you know, where it had been so difficult with school and she was really feeling depressed, having the job made a huge difference in her self esteem. Then also of course it was really encouraging to us and eventually we did figure school out the following year though. But having that vision there was an anchor. Instead of like giving up and throwing our hands up, we could go back to vision and say, well, okay, what can we do? So we’ve never forgotten that the vision anchored us.
Genia: Yeah, that’s pretty powerful. You know, those times when it really does feel like there is nowhere to go, that draining sink is a really powerful image for those times. And so what, what do you think would have happened in that situation or, or perhaps in others, but using that situation if you hadn’t had that vision.
Darcy: I think if we hadn’t had that vision, that Mary’s life at that point would have taken a very different turn. The high school, there was another time where they wanted to remove her from regular classes and put her into a class just for students with intellectual disabilities and her life would have become a whole lot smaller. This class was a small class. The students took the special school bus to school. In other words, not the school bus with all of the other kids. They arrived later than the other kids. They left earlier. They never left their classroom. So her world would have become a lot smaller and chances are when Mary left school, it would’ve been a whole lot harder to convince people to assist her to find a job.
Genia: So if you were to give some advice to new parents or parents with younger children with your 26 years experience, what do you think would be some of the most important messages that you would want parents to consider about vision?
Darcy: Okay. One, I think very important thing is to not define your family member by the disability that your family member lives with. And that’s not saying to ignore the disability. It’s not saying to be ashamed of the disability, but it’s seeing, you know, to think about, you know, the whole person. Disability is part of the person’s identity but not the whole identity. So to try to clarify that a little bit. Our daughter lives with Down Syndrome and so many times in her life, people, it’s an obvious disability right, so people look at her and they then make all kinds of assumptions based on their idea of Sown Syndrome, about what she can and can’t do, where she can and cannot go, who she can and cannot be with. And we found that those assumptions are usually very limiting. So we found as parents, one of our biggest roles in our daughter’s life has been to help people to see that Mary is more than just, quote, a person with down syndrome.
Darcy: You know, Mary is a vibrant person who has lots of interests and enjoys life, etc. Etc. So I would really encourage parents, yes, you need to pay attention to the fact that your family member has a disability and as they say, not be ashamed of it, but don’t reduce the person’s identity to that of the disability. So to think outside of that, right, to more focus on, you know, the person, the beauty that the person brings to the world, the gifts you know, of the person to the world. And, dependIng on the age of the person and their interests to develop, you know, as you go through childhood, their hopes, their dreams, their desires. I think that that’s pretty important in terms of vision.
Genia: Do you have any. I guess I want to say warnings?
Darcy: Okay. Yes. I think once you have the vision, this is a warning.
Darcy: Be patient and let the vision mature in you. Just as you can’t rush the development of a child in the womb, you really can’t rush the development of the vision. And sometimes I have seen families, and we’ve also experienced this, where we kind of quickly developed a vision. We acted on it quickly and it was kind of weak. It hadn’t really matured. We were exposed to lots of, you know, cynical, critical thinking and without the vision maturing and it was a great danger to vision I guess. So one thing I would encourage people to do along with that warning is to really develop a vision. But think about it, connect with others, as I said, who are farther along in the vision, reflect on it. And as the vision matures in you, you mature as well and you become ready then to move out in pursuit of that vision.
Darcy: So there’s kind of a preparation period – not forever. You know what I mean? It’s not too long, but it is thinking about that. The other warning is, is that I’ve found we’ve and many families go through dark times. And as I told that in that other story, we couldn’t move ahead for, for whatever reasons. This is when the vision is really in danger of dying. Things are dark. There doesn’t appear to be any kind of potential, anything happening. This is the time to be vigilant and to go back to the vision. Get with people, get with your allies and hold on, hold on rather than letting it die. And I guess the last part that I just mentioned that I’m not sure we’ve talked about, we have found as a family that it’s been very important to find some allies, people who would embrace… Embrace, you know, our daughter, who will be supportive, encouraging, even during those really hard times.
Genia: Yeah. And I’m really hoping that goodthingsinlife.org is going to be that place where people can come and find other families, other allies who share a vision of a good life for their son or daughter. And that they can both get some support when that anchor is really needed and they feel like they’re being blown off course, but also some guidance to figure out what kinds of things need to be thought about and how big can the vision be and to be supporting and challenging each other on an ongoing basis. I think you know just what you’re talking about around having those people around you. One of the stories that I’ve told a number of times, how about my own experience when my son was born. He was really quite sick and was in intensive care and there were all kinds of very real scary things going on.
Genia: And I, you know, I already knew about the importance of having a vision. But it was really hard in those moments to be able to see past just the current reality and see that there might be away out of it. And I think that he was three days old. And we live in different countries so we’re not, you know, we weren’t, it’s not like we were neighbors at that point, but I think he was three days old when I received a large celebratory gift basket from you in the intensive care unit. And that – just having those people around you to remind you in those difficult times about finding the joy. And remembering that, you know, the life of your loved one, of your family member is, you know, is still celebratory. It is still something to celebrate even during those very, very difficult moments. I think it is incredibly powerful in helping to sort of tread water, you know, and get through those moments without completely being cast adrift, to continue to using your nautical metaphors. So I, uh, I really hear you about the importance of having people around you.
Darcy: Yes. And I appreciate the effort of goodthingsinlife.com. I think it’s very helpful to be able to be in contact with other people who are all working on thinking about the good life and to be able to do it online is also very helpful.
Genia: Not to take away to take away from the importance of in person connections because that’s really valuable as well. I agree that having a place to reach out to and develop those contacts, sometimes those allies aren’t available in your neighborhood, in your vicinity. But there are people out there. So Darcy, do you have any concluding thoughts or is there anything that I should’ve asked you about or anything? Anything else that you think you’d like to say?
Darcy: I hope everybody actually thinks about the importance of vision in their lives. Maybe there’s one quote I’d like to read to you though.
Genia: Please do.
Darcy: Okay. This is from a man who wrote a book called “Visioneering.” His name is Andy Stanley. He says, vision always stands in contrast to the world as it is. Vision demands change. It implies change and visionaries. People who have allowed their minds and their hearts to go outside of the artificial boundaries imposed by the world as it is. Vision requires courage.” So I guess I’d say here’s to vision now!
Genia: That’s wonderful. Darcy, thank you very much.
Darcy: And thank you.
Genia: Thanks for listening. If you’re interested in reaching out to Darcy about her work, check out her website at darcyelks.com. If you need some help with creating a vision for your child, you can download a help sheet by going to goodthingsinlife.org/vision. Good Things in Life is a community for families with vision. Come on in. You’re welcome here!