Episode 3 Transcript
00:00 [music playing]
00:06 [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, we’re going to be talking about quality of life. As I had mentioned in a few previous episodes, future planning is kind of like a three legged stool, where each leg is a vital component to planning for and creating a good, happy future. And that’s legal planning, financial planning, and quality of life planning. So today we’re going to be talking about quality of life. What makes a good life for people? How can people live happily? And what can parents and caregivers do to plan for the happiness of their child in the future?
01:03 [music playing]
01:06 [Dan Hood] Well, if you second guess yourself, that’s not good either. So you always have to have people on your side that will also give you feedback and to encourage you. That’s the most important thing. Don’t listen to the naysayers.
01:21 [music playing]
01:27 [Allycia Wolff] So let’s dive in a little bit more to this, about quality of life and how caregivers can really plan for the future and make sure that their child always has the ability to have good quality of life. And I’m going to start this conversation by talking with my supervisor, Tori. Tori has been working with The Arc for nearly 10 years now and this whole time she has dedicated her career to really talking with families about the future of their child with a disability. And a passion that she has is that everybody has the strengths and the gifts to be able to be a valued member of their community. And so this is what she has as a core component of her advocacy and future planning is that every single person has something they can offer. And often when we think about what we have to offer our community, it’s often something that we take a lot of joy and a lot of pride in. So today I’m just going to be chatting with Tori a little bit about all these things. Thanks for being here today, Tori! Would you mind introducing yourself please?
02:37 [Tori H] Sure. I am Tori Hickenbotham-Westeren. I am the Chief Planning and Program Officer at The Arc Minnesota. I am also a sibling of a person with a developmental disability and an auntie of an individual with a developmental disability.
02:57 [Allycia Wolff] And today we are going to be talking about what makes a good life and how people live a good life. And I know in my conversations with you, it’s been a lot about looking at the strengths of people. What made… How was that different than like what you experienced in the past?
03:16 [Tori H] Well I think that most of us who have a loved one with a disability have been through meetings where we’ve been told all of the things that our loved one has to work on and has to do to get better, um, or be better. And those are their goals. And then that’s what the messages that we get about that person that they need to work on, you know, going to the bathroom independently or, you know, properly socializing with peers. And I think that continuously getting that message about what somebody needs to work on versus what makes them an awesome individual is really disheartening. Um, because you love that person. Like I love my brother and I love my nephew. And yes, I see the areas obviously that they need support in. And I also see what makes them amazing people and what makes me love them. And I want other people to see what makes me love them and not the things that they need to work on. So I think with person centered planning and planning in general, it’s about really drawing on those things and recognizing the worth of a person. It’s not about ignoring the areas where somebody needs help or support because we all have those areas. It’s about looking at that within the context of the whole person.
05:10 [Allycia Wolff] Have you seen any trends of what makes a good life or like how people can go about reaching that?
05:17 [Tori H] Um, well there’s been a lot of research done about what makes a good life, right? Because it is subjective. Each person’s definition is different and it’s really easy to put our own definitions on someone else. However, what the research has shown is that there are themes that make a good life for people. So one of the biggest themes, and there’s tons of great Ted talks about this, is relationships. People who love the person, people who care about the person, people who are there for that person. Which goes back to what I was saying before, right? Like I want people to love my brother and my nephew in the same way that I do. So relationships is really the number one thing. The other thing is home, a place to call home. That doesn’t have to be necessarily like a physical building that has windows, doors, a bed. It can be more about a place where somebody feels comfortable and feels like they can go when they’ve had a bad day and it’s their safe space. For a lot of people it means that building with the windows and the walls and the beds, um, and it doesn’t have to be just that. It needs to be that safe place.
06:49 [Allycia Wolff] For me it’s my dog. [laughs]
06:53 [Tori H] Right. Financial security is another one. You know, we often say money makes the world go round. And to some extent that’s true. It doesn’t mean that a person has to have a lot of money and be a billionaire because actually they found that that has negative effects on a person. But it does mean that an individual has enough money to, um, do the things that they want to do and have the things, within reason, that they want to have. And not have to worry about that.
07:31 [Tori H] Other trends are, um, let me see…
07:34 [Allycia Wolff] Contribution.
07:35 [Tori H] Yup. A contribution. So the feeling that they make a difference. And that could be through work, it could be through volunteering, it could even be through friendships. There’s really couple of different ways of thinking about contribution. That is, it’s different than how we generally think about it because we often think about contribution as, um, giving your work to an employer. You’re contributing. Or giving money to an organization. You’re contributing. But there’s also what we call contributions of being. And that’s how, like I can be with a good friend of mine and that person, if I’m having a bad day makes me feel better. Just by being around her, because of who she is as a person and how she acts. So it could also be, um, I have a good friend who happens to have an intellectual and developmental disability, and one of her contributions to me is that she really teaches to slow down.
08:58 [Tori H] And to pay attention to nonverbal cues that people give because that’s actually most of people’s communication. I was actually thinking about this this morning that, a lot of parents talk about how when their kid is a toddler, it’s really frustrating before they learn to talk because the toddler can’t communicate what they want with their mom and dad. And so then the toddler has a lot of meltdowns. And I have a young child at home and I realized that we haven’t had a lot of those same struggles with not understanding what she was trying to communicate with us. And I think it’s because of my friend that we’ve become so used to paying so much more attention to those nonverbal cues, that we’re able to read my daughter’s nonverbal cues much faster and more adeptly than we would had my friend not been in our lives. And so there are a lot of people who would look at my friend and see, to be frank, a charity case, right? Somebody who relies on the system, someone who always relies on the support of other people, somebody who needs as much help as anybody could give. And yet she’s given me so much in my life through that contribution of being. Right? So it’s just a different way of thinking about that and recognizing the value that people bring.
10:39 [Allycia Wolff] And I think that what you’re referring to is the study that Al Etmanski did in Canada called A Good Life. And he wrote a book about it, but it’s five major components that lead a good life for anybody. And so what he found was that it was relationships and a community, home, a contribution, financial security or wealth, and then choice. Having the ability to say what you want out of your life, everything from what’s for breakfast to where you live, to being able to really feel like you have control in your life. And I think that like having control and choice is something that we all innately take advantage of in our own life. And we forget how important that can be.
11:28 [Tori H] Yeah. And I think there’s an interesting trend right now kind of in the disability world where people are throwing the word choice around. So it’s a little bit of a difficult word to catch right now because saying that somebody has a choice when we give them two options, first of all isn’t much of a choice. And secondly, if you give a person a choice that they have no previous experience with or no context to in their lives, they’re going to always choose the one that is more comfortable or more known. So for instance, if you give a person a choice between… Or, a person who’s always been at a day training and habilitation center, if you give them the choice, if they would like to stay at the day training center or be employed in the community, as people like to say, a lot of times they’re going to choose to stay at the day training and habilitation because it’s what they know.
12:43 [Allycia Wolff] It’s what’s comfortable. There’s friends there, there’s people there and getting a job at Walmart [laughs] or wherever is something that’s scary and unknown.
12:55 [Tori H] Yeah. And they have no context, life context, for even what that means. Because throughout their entire lives, we rarely have prepared people for that future.
13:08 [Allycia Wolff] So what do you think real choice looks like?
13:12 [Tori H] I think real choice is about having those experiences and the exposure to a variety of options to be able to choose from. Because you have to have knowledge and exposure to be able to make an educated choice.
13:34 [Allycia Wolff] And the ability to make mistakes, too.
13:36 [Tori H] Yes, exactly. I think so often we give people choices that are between two evils, right? And so we don’t give them the opportunity. We say… I’m babbling right now. Um, but I think of it like with my toddler, right? I say, do you want eggs for breakfast or do you want cereal for breakfast? Now there are a lot of other breakfast options, but I’m only giving her the two that I want to make. And I think we do that with people with disabilities a lot because we are scared of what the other options are or what that could mean. And so we don’t let people take that risk.
14:33 [Tori H] There is a wonderful professor out of Mankato State University, and she said something that really stuck with me. And she said, we have low, for people with disabilities, we have low expectations and high standards. And what she meant by that was that for a lot of people with disabilities, we don’t expect that they’re going to succeed in the ways we normally measure success. And yet we tend to have super high expectations for people with disabilities that we wouldn’t put on somebody else. And what I mean by that is, as we think about quality of life, and we talked about, you know, having a place to call home, I’ll use that as an example. A lot of times we find that people with disabilities, they’ll say, you know, I want to live on my own. I want a house of my own, or even I want an apartment with a roommate.
15:38 [Tori H] And we say to that person, well, you can’t do that until you know how to do your laundry, and you know how to cook, and you know how to clean, and you need to shower every single day. And so we have all of these expectations that we put on this person that they have to achieve before we will let them have that thing that leads to quality of life. And yet, if the person didn’t have a disability, we wouldn’t do that. How many kids are sent to college having no idea how to do their laundry? I’ll tell you me for one. No idea. And I still don’t cook. Thankfully my husband cooks. Right? And so in our, in our own lives, we figure those things out as we go because we’re allowed to take those risks. And you know, we often say as family members, I want my son or daughter to have a good quality of life. And what we normally mean when we say that, myself included, is that we want them to be healthy and safe.
16:53 [Allycia Wolff] Hmm-mmm.
16:57 [Tori H] And yet the research says nothing about being healthy and safe as being the number one and two indicators of what makes a quality of life. Right? So we have to think about, when we’re thinking about quality of life, we have to think about those other things that actually lead to a quality of life.
17:18 [Allycia Wolff] So how do you, how do you strike that balance? How do you, as a caregiver? Because you’re always going to want a loved one to be safe and healthy. But then what research shows and what we all experience in our life is that like having fun and having choice and having a good home and people that we connect with is actually what leads to a good life. So how do you balance that?
17:41 [Tori H] Um, I think it’s about looking at the risk and saying to yourself, as a family member, as a caregiver, what is the worst thing that could happen? And really honestly getting doom and gloom about it. What is the absolute worst thing that could happen if my loved one took this risk? And then once you’ve done that, say, okay, if our goal is for the person to be able to do this, what do we need to do or put into place as far as supports or precautions so that that doesn’t happen.
18:30 [Tori H] It’s not about necessarily shying away from that fear, because it’s there. It’s gonna keep you up at night. But it’s about meeting it head on because there are a lot of things that you can put into place. And then there are some things that you just can’t prepare for and the person can fail. And then the person learns because that’s how we all learn. We often learn more from our failures than we do our successes. And most often, the thing that we fear is going to be the worst case, what’s going to happen, never happens.
19:10 [Tori H] You know, so if it’s a situation of life and death, then yes, obviously that may be too high of a risk. But often the risk is that the person is not going to have clean clothes to wear. Which is not life or death. It just means they’re going to be wearing dirty clothes or they’re going to figure out how to do their laundry or have someone help them.
19:34 [Allycia Wolff] Yeah. And if I think back on my life personally and what experiences I’ve grown the most from, it’s been when I have failed and made mistakes, large or small, and that has been what has created my character and who I am and has made me make better decisions in the future. And I want to give like justice to, that’s a really hard spot for people to feel comfortable in is, is like going into that unknown, like you’re jumping into a pool both feet like forward.
20:10 [Tori H] Yeah. And it’s, I mean it is so scary as a parent, you want to keep your kid in a bubble for as long as possible because you don’t want anything to happen. And you know, I as a parent, I can relate to that. And again, I have to remind myself that if I don’t let my children take those risks, they aren’t ever going to learn. And I, as much as I love them and adore them and always want to be with them, I don’t want them dependent on me.
20:45 [Allycia Wolff] Yeah. You want their own life.
20:47 [Tori H] Yup. For their entire lives. Because the things that I want for them, having a home of their own, having friends, having relationships, all of that comes through taking risks. And if I keep them in that bubble and dependent on me, they’re never going to have those things. And so I have, you know, I have to weigh that balance for myself. And I understand that as a parent of a person with a disability, it’s even more difficult because you’re told over and over again, this child needs you, this child is vulnerable.
21:25 [Allycia Wolff] You sit in meeting after meeting, hearing all the things that your child can’t do and all the things they need to fix.
21:32 [Tori H] Exactly. So that makes it even more difficult. And I, you know, I understand that. And so it makes it difficult for parents. And so, you know, everything I say it’s not, it’s not to say, Hey parents, you’re doing it wrong. It’s, I get it. You know, it’s tough.
21:54 [Allycia Wolff] It’s a constant challenge and need to reevaluate how you’re thinking about it.
21:59 [Tori H] Yeah. Yeah. Every day, every day, every new challenge.
22:06 [Allycia Wolff] Thanks Tori. As you can probably tell from our conversation so far, there’s no one way that you can ensure that somebody always is going to live a good life. It depends on a lot of factors. It depends on a lot of personalities. It depends on access to different things. And there’s a lot of different variables that are at play, but one thing is consistent and that is ensuring that somebody has a voice. And when I say voice, I don’t necessarily mean an actual voice because that would imply that a person that doesn’t use words to communicate, can’t have a good life. And as Tori mentioned in the previous interview, is that somebody who has any level of disability can live a very good life and can make connections with people. So what I’m trying to say is that the overarching theme to people living a good life is having a say in what that life looks like and having connections and people that value them.
23:15 [Allycia Wolff] And so overall, that is a way that you can ensure that somebody is living a good life. Is by setting up that to happen. So making sure that your loved one has people in their life that value them individually and that they have access to do what they want and choice in what they want. And can just have fun with our time. So next I want to share a conversation that I had with Dan Hood, who is a self advocate and really heavily involved in The Arc and a lot of our policy work and self advocacy work and is also just a really wonderful human being. And Dan wanted to share his experience in what makes a good life because he is passionate about the fact that everybody can have a good life. And so I will just jump right into the interview with Dan then.
24:13 [Allycia Wolff] Hey Dan! Welcome to Focus on the Future. Thanks for coming in today.
24:18 [Dan Hood] Oh, thank you! Thank you very much.
24:20 [Allycia Wolff] So Dan is involved in self-advocacy around the state of Minnesota and you live in St. Paul and you have a radio show. What’s the name of your radio show?
24:33 [Dan Hood] Yeah, it’s HoodWave Disability Radio.
24:35 [Allycia Wolff] HoodWave Disability Radio. And what do you talk about on your show?
24:38 [Dan Hood] Well, right now we’re in the process of getting, getting information, talking about the information, and to really focus on the issues.
24:50 [Allycia Wolff] Okay. And it’s basically, it’s like mostly issues that people with disabilities face.
24:54 [Dan Hood] Correct.
24:55 [Allycia Wolff] Okay. And it’s, and it’s like, it’s different events that are happening and it’s different news that’s going on and it’s for people with disabilities and it’s for the community and it’s for families. Right?
25:08 [Dan Hood] That’s right.
25:08 [Allycia Wolff] Great! And people can go where to listen to it?
25:13 [Dan Hood] Oh yeah. They can go to www.hoodwave.org and to listen to our podcast.
25:21 [Allycia Wolff] Absolutely. Well, thank you for being on this podcast today and I just wanted to talk a little bit about what it means to live a good life because that’s, that’s what this episode is all about is how do you live a happy life. So I’m wondering from your perspective, what makes you happy?
25:40 [Dan Hood] Family, friends, spending time with family. I mean that’s, but that’s the best thing. You know, my wife is a good friend. I mean we get along really well.
25:50 [Allycia Wolff] Yeah. Yeah. You and Leah, you’ve been married for how long?
25:54 [Dan Hood] For over a year.
25:55 [Allycia Wolff] For over a year now. Great. And would you say that you’re happy with your relationships right now? Like you feel like you have a good circle of people around you?
26:04 [Dan Hood] Yes.
26:04 [Allycia Wolff] Yeah. Yeah. And that makes you happy because…
26:11 [Dan Hood] Gives me something to look forward to every day.
26:13 [Allycia Wolff] Yeah. Yeah. It’s good to feel support from friends and family.
26:17 [Dan Hood] Yes.
26:18 [Allycia Wolff] Yeah. And then, you’ve mentioned that you haven’t, yeah, always gotten that support from people in your life before, like you’ve had teachers or different people that have supported you that have said, Oh, well that dream’s not realistic. You can’t do that. Yeah. And when people say that kind of stuff to you, what’s your response? What do you say?
26:40 [Dan Hood] Oh, uh, my response is, I can pretty much do anything. I just need you to give me a chance. And also what is important is to give yourself a chance.
26:51 [Allycia Wolff] Yeah. Yeah. What do you mean?
26:53 [Dan Hood] Well, if you second guess yourself, that’s not good either. And so you always have to have people on your side that will also give you feedback and to encourage you. That’s the most important thing.
27:07 [Allycia Wolff] Yeah. So surround yourself with people that encourage you and then also believe in yourself.
27:12 [Dan Hood] Don’t listen to the naysayers.
27:16 [Allycia Wolff] Yeah. [laughs] Yeah. Cause there’ll always be people that tell you that you can’t, right?
27:19 [Dan Hood] Yeah!
27:19 [Allycia Wolff] And when you think about your future and stuff that you want to happen in your life, what are some of your goals and hopes for your future?
27:36 [Dan Hood] Well, my hopes is to basically have a family. Children that’s, you know, that’s my heart’s desire. If I can’t have a kid well my wife and I will have, you know, dogs and lizards. I mean anything that has four legs that… Unfortunately can’t be cats, but I’ll be able to do other everything else.
27:58 [Allycia Wolff] Are you allergic to cats?
27:59 [Dan Hood] No, my wife is.
28:00 [Allycia Wolff] Ah, so no cats.
28:02 [Dan Hood] No cats!
28:02 [Allycia Wolff] So dogs and lizards. [laughs] So that’s what you want for your future is a family, and a community, and a place that you feel like you belong.
28:14 [Dan Hood] Yeah. I believe everybody should be welcome to or in a community. That’s the biggest, you know, that’s my passion is that everybody to be included.
28:28 [Allycia Wolff] Same. Yeah. And that’s what you talk a lot about on your podcast, right?
28:32 [Dan Hood] Yes.
28:32 [Allycia Wolff] Yeah. Yeah. And so today, the audience of the people that are listening to this podcast, Focus on the Future, is mostly parents and caregivers that are supporting people with disabilities. Is there anything that you want to share with parents?
28:53 [Dan Hood] Yeah. To encourage your children. Help them. You know, just educate them. I mean, everybody learns differently. I learn differently. So does everyone else. Yeah, just be patient. Love them. That’s all of the basic… That’s the best thing you could do is just love them and be patient.
29:15 [Allycia Wolff] Love and be patient. Have faith.
29:17 [Dan Hood] And have faith.
29:17 [Allycia Wolff] Yeah. That’s great. And you are very involved in self advocacy. What does self-advocacy mean to you?
29:30 [Dan Hood] To have a voice, to speak up for yourself and speaking for the people that cannot speak for themselves. To be an advocate, basically. That’s it. Advocating for oneself or for others.
29:44 [Allycia Wolff] Yeah. Using your voice.
29:46 [Dan Hood] Using your voice.
29:47 [Allycia Wolff] And why is that important?
29:51 [Dan Hood] To build self-confidence.
29:51 [Allycia Wolff] Yeah, absolutely. And I think that, too, it’s important that people with disabilities are good self-advocates because too often there’s a lot of people that will tell people with disabilities that no, you can’t do stuff. And so to be a good self-advocate means that you’re going to speak up for yourself and know what your worth is and know what you want out of life.
30:21 [Dan Hood] Yup. That’s correct. Yeah.
30:22 [Allycia Wolff] Yeah. Great. Is there anything else that you want to share on this podcast or want to share in general?
30:29 [Dan Hood] Not really. I think everything’s gonna be good.
30:35 [Allycia Wolff] Perfect. Thanks for coming in, Dan.
30:37 [Dan Hood] [laughs] Not a problem.
30:41 [Allycia Wolff] Many, many thanks to Dan for coming in and chatting with me and sharing his experience about what it means to live a happy and a good life for him. I really appreciated sitting down and chatting with Dan today and I’m glad that you guys were all able to hear it as well. That mostly wraps up our episode for today. I think that there are many different aspects of what makes a good life. And a few takeaways from this is that it’s different for everybody, but the common threads are consistent with relationships and security and having choice. And earlier in the episode Tori had mentioned that there’s many, many great TED Talks on this subject specifically. And a few that I wanted to point out are… I just went to Google and I Googled TED Talks A Good Life. And the first episode that came up was one from 2015 and this is a Ted Talk that I personally have probably watched five or six times. So that’s a really great longitudinal study on what it means to live a good, happy life. And this is consistent with disability or without disability. And then a few other ones to note are a Ted Talk done by Stella Young, and then a TED Talk that also is called Our Fight for Disability Rights. And then another one is Three Things I Learned From My Intellectually Disabled Son. Also, Elise Roy does a great one. So basically if you just look up TED Talks, there’s a lot of really great content, um, and a million really wonderful podcasts about how to live a good life. So I will let you explore that on your own and I will see you next time. Thank you so very much. Have a great day.
32:28 [music playing]
32:32 [Allycia Wolff] If this episode inspired any questions for an advocate at The Arc Minnesota, please give us a call. You can reach us at (833) 450-1494. Focus 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 the newest episodes. If you’re enjoying listening, please support the podcast and our mission by donating at arcminnesota.org/podcast. On the next episode of Focus on the Future, we’re going to be talking about financial planning. A topic that most everybody dreads talking about. I’m going to be interviewing a financial planner here locally in Minneapolis, Minnesota who has a child with a disability. And he’s going to talk to us about how financial planning doesn’t need to be something that causes you misery. He compares it to going to the dentist. If you don’t go to the dentist very often and you go once every decade, that visit isn’t going to be very positive, but if you go once every six months, it doesn’t end up being that bad. So we’ll talk about financial planning in our next episode. Please join us. Our podcast music is composed and recorded by Micah Kadwell. Micah is a talented guitarist from New Brighton, Minnesota who also has autism. Thank you, Micah! I’d also like to say a special thanks to Chloe Ahlf, who is the producer of Focus on the Future, and the sound engineer, Brent Nelson. Thank you so much, Chloe and Brent! We are all equal parts of this podcast. Thanks for joining us today and we’ll see you next time. Have a great one.
