Episode 7 Transcript
00:00 [music playing]
00:04 [Allycia Wolff] Welcome to Focus on the Future, a future planning podcast for caregivers and families, supporting people with disabilities. Focus on the Future is a podcast of The Arc Minnesota, a nonprofit organization advocating for folks with intellectual and developmental disabilities. My name is Allycia Wolff. I’m an advocate here at The Arc Minnesota, and your host for Focus on the Future. In this week’s episode I interviewed Dr. Nancy Fitzsimons, who’s a professor out of Mankato State University, about what it means to do safer future planning. One of the biggest notes that I get from parents is the fear and concern for their child’s safety in the future. And so I figured that this would be a really important podcast episode to focus on. So join us as we walk through this conversation.
00:51 [music playing]
00:55 [Dr. Fitzsimons] I want to challenge everybody to presume your own competence. Presume that you can empower your son or daughter to be their best self. Right? And come to this from that notion of sharing power with and helping them to develop the power within and just know that for every individual, there’s always something we can do to help them to be safer. And to live a happier, healthier life.
01:31 [music playing]
01:36 [Allycia Wolff] Today we’re going to take a broader look at future planning. Take a step back and think what the underlying thing that we’re trying to really accomplish here is. And at the end of the day, I really think that’s about planning for a safer future. So we’re going to talk about all of the different elements of safer future planning because when it comes down to it, that’s the root of why we do future planning…is fear. Now, don’t get me wrong, there is a lot of hope and promise and opportunity and joy, but the reason that we do estate planning and intentional future planning is, in big part, the worry that we have. People don’t tend to wake up in the middle of the night and say, “Oh, I’m living life with such ease and such promise.” Unfortunately people are waking up in the middle of the night out of fear and concern. So let’s talk about it a bit. Not necessarily the fear part, but the, what we can do about it part. And before we create a way out of that fear, it may be helpful for us to note some of the trends that I’ve noticed over the past two years, working with families as they plan for the future of the lives of their loved ones with disabilities.
02:56 [Allycia Wolff] And what I’ve noticed are there are a few main components of what it means to live a safe life and to do safe future planning. And Dr. Nancy Fitzsimons has been kind enough to come in and chat with me about her work in this area. She’s really dedicated her career to rethinking safety and how people with disabilities can live good, happy, safe lives. And what we kind of pulled out in this conversation was the different pieces of interdependence, vulnerability, and competence. These are all pillars in the discussion of safer future planning. So as we walk through the interview with Nancy, I will be adding in some things to consider along the way.
03:45 [Allycia Wolff] Good morning, Dr. Nancy Fitzsimons. Thank you for coming in to the podcast today. Welcome.
03:52 [Dr. Fitzsimons] Thank you for inviting me.
03:53 [Allycia Wolff] Yeah, I would love if we could start by you introducing yourself.
03:59 [Dr. Fitzsimons] Sure. Well, as you said, I’m Nancy Fitzsimmons. Currently I’m a professor of social work at Minnesota State Mankato. I’m a native Minnesotan. And my first social work job when I moved to Chicago, Illinois was to work with families who had children with intellectual and developmental disabilities. And that led to most of my career somehow connected to people with disabilities in a variety of different jobs and capacities, which sort of brings me to today and teaching social work and serving on the board of Arc and the chair of the Council on Disability doing a variety of things as an ally with people with disabilities.
04:41 [Allycia Wolff] And so now you are working at Mankato State and you have a variety of different classes that you are teaching students and you just wrote a book recently, right? And you’re working on another one.
04:52 [Dr. Fitzsimons] Well, the book I wrote is now, it was written in 2009 so it’s been quite a while. And that book focused on violence and abuse in the lives of people with disabilities. So yes, I’m working on a second book, a followup to that one, that is really what I call the danger of the single story, the danger of a single story of disability, of vulnerability and the single solution of protection. So probably over the last 20 some years, a lot of the work that I’ve done has been focused around the problem of what I call interpersonal violence, but many people refer to as abuse and neglect of people with disabilities. That’s been my primary focus.
05:32 [Allycia Wolff] Great. I know that we are all looking forward our, to your book here. Personally, I am for sure. I wanted to now start the conversation into safer future planning, just really broadly and generally, in thinking about how people can prepare and what people can do to support their child in really actually planning for a safe future.
05:59 [Dr. Fitzsimons] We don’t do people with intellectual developmental disabilities a service if we think that somehow we need to create a separate special, you know, different way of approaching life’s issues because they have a disability, than you would do if your child did not have an intellectual or developmental disability. That we need to sort of really step back and think about again, how do you take whatever your son or daughter’s strengths, abilities needs are and that you support them in becoming their best self, right, their most self-determined self. And that you model that for everybody around in their lives so that they know, right, that their expectations about how we support and treat their son and daughter, this person, right. You’ve modeled that, you’ve set the standard and the expectation. And that you’re not afraid to have the difficult conversations and that you’re gonna pick up on something isn’t quite right and that people know that and that you’re going to believe that you’re, you know… And I think that when you do that, it sets the stage for everybody else around in life knowing, again, I’m either going to get on board and support this person in the way from a place of respect and supporting their assertiveness and supporting them as a complete human being, or I’m not. And if I don’t, people are going to notice and they’re going to, they’re going to hold me accountable. They’re gonna hold the system accountable and then that individual is going to be supported and having their best life. So we just…you know, I want to challenge everybody to presume your own competence. Presume that you can empower your son or daughter to be their best self. Right? And come to this from that notion of sharing power with and helping them to develop the power within. And just know that for every individual there’s always something we can do to help them to be safer and to live a happier, healthier life beyond the fallacy of this protective bubble. That you can do this! And you will feel empowered and as you feel empowered, that will empower your son and daughter and together. Like, I mean, there’s something beautiful about that becoming empowered together, presuming competence together.
09:10 [Allycia Wolff] It’s that true inner connectedness.
09:14 [Dr. Fitzsimons] Absolutely that true interdependence. Right? And that’s how we will change the world. Really. I believe this for people with intellectual and developmental disabilities. We will change it through this, right? We will change it through our sort of… And it starts at the beginning with family and home, and then we move this to all the people around that support people through education, through work, where people live. But it starts with parents and siblings to really believe in their family members, and to sort of cocreate this interdependence based on competence and empowerment and respect. Yeah.
09:55 [Allycia Wolff] Thank you. Along with that conversation of interdependence and how we have people in our life that we rely upon. I think back to a Ted talk done almost 10 years ago now by Brene Brown. Probably one of the most popular Ted talks that has ever existed. And it’s launched Brene Brown into this whole conversation about vulnerability as a general population. And Brene Brown said, “Connection is why we are here. It gives power and meaning to our lives. And as I watched her Ted talk recently, I was thinking about how, when Brene Brown talks about vulnerability, she talks about a differently than how we talk about it in the community of supporting people with disabilities. She talks about vulnerability as being a view into yourself that you’re not really sure that you want people to see and you’re open and you’re honest and you’re raw. And then when we talk about vulnerability for people with disabilities, it’s more around an abuse context. And so I just wanted to consider how these things are being talked about in different ways, but then also how they align and how vulnerability is something that we all struggle with and we can all take active steps towards embracing vulnerability, recognizing what it is that it does to us and then how to move forward with that.
11:29 [Allycia Wolff] So that brings me to this analogy that I’ve been thinking about a lot recently in my career and that is that, I truly believe that nobody is an island, and we all need people to support us and help us along the way. And too often when I’m having conversations with families and with people, it is very much a conversation of, okay, well I want to be independent. I want to live on my own, I want to have my own apartment. I want to be completely independent, but that’s not often a conversation that I have amongst my friends is like, what kind of life do you want to live? Everybody wants to be safe and happy and healthy and all of those things, but I as a human don’t want to be independent. I want to be interdependent. I want to have friends that I rely on and people that rely on me and too often the focus for people with disabilities is to be completely independent. And I know what parents are saying when when they say that they want that for their child or what people with disabilities are saying is they want to, you know, be able to live the American dream. You know, pull themselves up from their bootstraps and be able to do their whole lives on their own. But you’ve done a lot of research and study into the difference between interdependence and independence. How do you talk to your classes and students and just what are your thoughts on that?
12:50 [Dr. Fitzsimons] Right. Well I think it’s, I mean this is one of the areas that I’ve been thinking more recently about and I’ve had conversations with people and who sort of get a little uncomfortable when we say interdependent, because we are still striving so much for people to have a life of their own, right. But a life of your own, of your own choice of your own making, you know, that fits your rhythms and paces and patterns and desires of life isn’t synonymous with independence. It actually is synonymous I think with interdependence and that what we really need to be focusing more on is like, self determination in people’s lives, you know, and autonomy, meaning you determine the kind of life you want and then we create, you know, the supports and the network to make that happen. And that’s really what interdependence is.
13:44 [Dr. Fitzsimons] And I appreciate you talking about like in your own life, um, that we need to move away from somebody is going to be all on their own in this island. No. Interdependence is, really to me, rethinking about…that is so connected to rethinking about vulnerability and safer. And I use the concept of safer planning, not safety and not being safe because there’s no such thing, but we can be safer and we can be safer through interdependence. And what I mean by that is who are the people in your life, whether it’s family and friends, whether it’s paid caregivers and staff, whether it’s people in the places that you live, learn, work and play in your community. Like who are the people in your world, right, that you can count on for different things.
14:40 [Dr. Fitzsimons] And we start to figure out what those different things are that are going to be there to support somebody to problem solve. You know, to help think through the right options are, or to go to when something, when you’re frightened, when something is happening that you’re uncertain about or uncomfortable or when something bad happens, like abuse, right? Or where you feel somebody is neglecting your care. If we really emphasize interdependence, what that means is that people have a network of people and resources and places to go to. And that’s actually what most of us do, right? I know in like our own work, and when we teach social workers, a lot of what we’re doing with people is trying to sort of find out, well like who’s in your life and who are the people in your life that build you up? Who are the people that are in your life that help you to be the person you want to be, the better person you know, and support you and make you feel good about yourself.
15:38 [Dr. Fitzsimons] Okay. So let’s, how do we, how do we connect more with those people? Where are there pockets where you need more people in your life and you want more people in your life? Well, let’s find, well, you know, what or where might people be. And then who are the people in your life who, you know, who really contribute to harm, they make you feel bad about yourself and whether or not they’re physically harming you or neglecting you or they’re perpetrating, you know, some type of violence or whether they’re just treating you in ways that are disrespectful and don’t help you to be your best self. Well then we need to get those people either out of your life or we need to change the way in which those people treat you.
16:24 [Allycia Wolff] Treat you. Hm-mmmm.
16:26 [Dr. Fitzsimons] And interact with you. Right? And so interdependence, if we start rethinking it that way, with quality relationships, the relationships and the quality of those relationships matter in the places where people live, learn, work and play and worship. That right there in and of itself contributes to reversing vulnerability to harm being perpetrated. And when harm is perpetrated, you have a network of people who will support you and help you get through that.
16:56 [Allycia Wolff] When one shares a life with people that they get joy from and feel supported from and have more of like a symbiotic relationship with, they feel more empowered to make their own choices. And I know that I’ve seen it in my own personal life. When I have people in my life that encourage me and believe in me, then I am more able to follow my dreams and to feel supported because I know that if I fail or something goes wrong, I have people to reach out. And basically that’s what Nancy and I are talking about in this whole interview.
17:32 [Allycia Wolff] Now the next piece that we are going to move into is the conversation about vulnerability. Vulnerability is something that comes up often in having a conversation about future planning is the concern about vulnerability. And so this is just a slightly way to think about it. And Nancy talks a lot about how vulnerability, at the core of it, is really power. And she has this tool, that if you’re interested in, you can definitely look into, that she refers to, it’s a wheel of power and control based off of a caregiver and a person receiving care and support. And so it’s what a healthy relationship looks like in that power and control dynamic. And what an unhealthy relationship looks like. So here is Nancy talking about her relationship and experience with vulnerability.
18:28 [Dr. Fitzsimons] There’s this important concept of sharing power with, not power over. And what we need to help support people in doing is developing the power within themselves. So we need to talk about, like one of the self-advocates that I’ve been connected to for many years… you know, her name is Heidi. And Heidi says, “Oh, you mean all the, you know, the good stuff. Yep, we need to talk about the good stuff and the bad stuff, not just the bad stuff.” But also the good stuff simultaneously so that we make a stark contrast between, this is how you deserve to be treated by other people, and this is unacceptable treatment by other people.
19:16 [Dr. Fitzsimons] And then we have to delve into the weeds of some of that gray stuff. And what I mean by that is what I call some of the ways in which we treat people, the daily indignities that may not seem harmful on the surface, but I think that really destroy people’s sense of self determination.
19:37 [Allycia Wolff] What is a daily indignity? What’s an example that you could give?
19:41 [Dr. Fitzsimons] An example of that would be making decisions for somebody else about every aspect of their life. What time they get up in the morning, what they eat for breakfast, whether they make the bed or they don’t make the bed, you know, if they wash the dishes and when they wash the dishes. I mean, for some people their lives are so controlled by what other people want them to do, when they want to do that. And to me that’s an a day that’s an indignity. That’s a daily indignity, which takes away sort of, a person’s sense of self and how they want to live their life, what is important to them.
20:21 [Dr. Fitzsimons] And when we do that in all the little things, we shouldn’t be surprised when people are treated in what we all would say like, that is really hurtful, like that is abuse. And that people don’t necessarily really recognize that. They just go along thinking, you know what, I’m just going to go along to get along and hopefully people won’t hurt me. So we shouldn’t be surprised when some really horrible things happen to people. And we find out about it six months later, a year later, two years later, five years later, and we say, why didn’t they say something? Well, if your entire life is controlled by other people in all of the little tiny ways, if people don’t really seem to care much about what you want or what you think, people don’t really have that great of expectations of you, that you have a point of view, then why would you assert yourself? So if we, if we help to empower people in all the little ways in their life, they will have more strength and courage to tell us about the really bad things going on in their life.
21:44 [Allycia Wolff] Part of Brene Brown’s Ted talk on vulnerability gets to the theme of worthiness and she says that people that are able to live a happy and joyful life are vulnerable to all of the good and bad things that happen. And what is consistent with these people that are open to being vulnerable and experiencing the good along with the bad, is this feeling of worth and this feeling that I deserve to be treated with respect. And you can see it is in direct alignment with all the things that Nancy and I have been talking about through this interview as well, is when people know that they deserve to be treated with respect, then they are inherently then less vulnerable. And it’s, it’s been really interesting to me to see these two conversations play together and how when people recognize themselves as valuable worthy humans, then they are in fact safer and will live a safer life. And as we think overall about safer future planning. Here’s a little note from Nancy about what she tries to think about overall in this journey.
23:12 [Dr. Fitzsimons] Yeah, I think it goes back to, I know that every parent listening to this has the best of intentions, right, for their son or daughter or their family member, your brother or sister or aunt or uncle. And I think the challenge for all of us is to just go back and start thinking about what’s the impact. And yep, sometimes you have to, I mean I think the growth and learning, my own growth and learning, has come from the ability to just sort of unpack and be sort of real about all of the things that I am sure I have done in my 30 plus year career that probably weren’t as helpful, maybe were even harmful. But there’s a quote by Dr. Maya Angelou that is something like, I did then what I knew then and when I knew better, I did better. And to me I just try to live by that. Like, you know, as I know better, I do better. And I think that that’s just the way that I think we need to approach this.
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24:18 [Allycia Wolff] If this episode inspired questions for an advocate at The Arc, please give us a call at 883.450.1494. On the next episode of Focus on the Future, I will be talking about building community and friendships and belonging and ways that we as humans can connect with other people. Focused on the Future is a podcast of The Arc Minnesota. Subscribe to the podcast on your favorite streaming service to stay up to date with all the newest episodes. And if you feel so inclined, please leave us a review to let us know how we’re doing or any content that you are hoping for in the future. If you’re enjoying listening, you can also support The Arc and our mission by donating at arcminnesota.org/podcast. Our podcast music is composed and recorded by Micah Kadwell. Micah is a guitarist from New Brighton, Minnesota, and he also has autism. Thanks, Micah. Focus on the future is produced by Chloe Ahlf and myself and engineered by Brent Nelson. Thank you Chloe and Brent. Have a great day everyone. See you next time.
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