Episode 8 Transcript
00:00 [music playing]
00:01 [Allycia Wolff] Hello, 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 am an advocate here at The Arc Minnesota and your host for Focus on the Future. In this week’s episode, we are going to be discussing friendships and community and belonging and how the relationships that we have in our lives are directly tied to our health and our happiness. When I am working directly with families, um, and doing future planning, I often hear families share that they’re concerned about the who is going to be in their child’s life and not necessarily even just the who of who’s going to be there to care for somebody, but who’s going to be there to enjoy life’s moments and see all of the wonderful things that you know your loved one has to offer and offer that friendship and the community really.
01:11 [Allycia Wolff] And so this is something that I really wanted to dive into and share more about why friendships and belonging are important and then how to build that. So I invited Angela Amado, who is a wonderful woman who has dedicated her life to research about how people with disabilities can create good lasting connections and build their network. She has made a huge impact on my career. And in this interview we’re going to be talking pretty high level about all the things that she’s learned and get some good takeaways from that. And since she has had a career of 30 years, there’s going to be a lot more information that she has to share. And so I would highly recommend Googling Angela Amado. And at the end of this podcast I will share a workbook that she has created that um, go step by step to help walk people through the steps of what you can consider as you’re building your network. So without further ado, here is the conversation that I had with Angela Amado. Thanks for joining us.
02:27 [Allycia Wolff] Hey Angela, welcome to the podcast. Could you introduce yourself quickly for the listeners please?
02:32 [Angela Amado] Sure. My name is Angela Amado and it’s great for me to be doing this podcast. I’ve worked with people with many different types of disabilities for more than 40 years and I worked for 35 years at the University of Minnesota’s Institute on Community Integration. And I’ve done training in many, many, many States and in Canada and several European countries and in Australia. So I have a lot of experience about many different facets, about people who have a disability label.
03:07 [Allycia Wolff] Why are friendships important and why focus, why put this focus on helping people with disabilities create friendships?
03:19 [Angela Amado] There’s a tremendous amount of research about social relationships and the more people in your life, the impact that that has on the quality of your life. So, our social relationships affect our happiness, our social relationships affect our health, they affect our longevity, knowing that there’s people who care about you, it’s just important across the board in terms of the people and the people in our life. And there’s a lot of research more recently about people reporting loneliness including people who don’t have a disability label. You know, there’s lots of research about how we’ve become attached to phones or the internet and that kind of thing and how that’s actually in some cases increasing people’s experience of loneliness as opposed to our direct experience with other people. And I will also say that it’s important to, I got interested in people’s relationship with community members because many people with disabilities, the only people in their life or their family or other people with disabilities, and that’s quite an isolating experience.
04:38 [Angela Amado] And just over and over again, I have seen people blossom when they have more non-disabled people in their life. But one of the reasons why it’s important to work on it, is also the benefit to community members of getting to know people. So over and over again, I’ve met community members who will say something like, I’m probably getting more out of this relationship or friendship than they are. There’s just in terms of us building a more inclusive, a more accepting, a more valuing society for and actually altering the lives of people with disabilities and the quality of their life. The benefit to community members in getting to know people is also one of the reasons why it’s important to work on this.
05:24 [Allycia Wolff] So what was it about friendships that resonated with you and what did you first want to do with it when you started in this field?
05:35 [Angela Amado] When I was doing the work about people living in the community instead of institutions, a lot of people at the time, this was in the eighties, people were saying that people were in the community, but they weren’t of the community. And people still say that today, 30 years later. But when I was doing that work in the 80s and people were saying that, that people were in the community but not of the community, I didn’t see anybody who was doing real work about: was there something that people could do? Was there something that agencies could actually do about people having more friendships with community members and being of the community. And so I started on my first project actually in 1989 about that, that was called Friends. So that was how I got into that particular focus, was just looking at where there things that agencies and staff could do to impact, um, the friendships between people with disabilities and community members.
06:35 [Allycia Wolff] You started that work in the 80s and you have been doing it consistently then until you retired just a few years ago.
06:44 [Angela Amado] I’m still doing it even though I’m retired. I’m still doing, I’m still working with a couple of agencies here in Minnesota and uh, I still get requests from people in other States and actually from other countries also. I still get requests to come and do training.
07:01 [Allycia Wolff] So you’re not really retired.
07:05 [Angela Amado] I retired from the university of Minnesota, but I’m still, I’m not retired from this particular passion and this particular commitment to connect people with disabilities and community members together.
07:17 [Allycia Wolff] Got it. And in the few decades that you have been doing this work, what themes have come up? What have you found? Because you said that people were talking about it as an issue, but then not many people were doing anything about it. What did you tell people or what like like theories and concepts did you give people to use?
07:38 [Angela Amado] Well, the work that I was doing about friendship was really grounded in the whole perspective about being person centered and it was actually also in the 80s that that whole initiative started, which I also do training about what it really means to be person centered rather than agency centered or system centered. And so some of the values of being person centered, one of the fundamental values about it is seeing people as their gifts, seeing people as their interests instead of what it is that they can’t do. The focus in much of disability services or supports is about what people can’t do and what they need support for to address that as opposed to looking at what is it that is someone, what are they interested in, what are their gifts, what do they have to offer other people? So that’s really one of the fundamental things that I’ve seen is that particular focus and then using their gifts to connect with community members.
08:42 [Angela Amado] And then another couple of themes that I have found over and over again is what it is that you believe. Like do you believe that people have something to offer? Do you believe your family member has something to offer to you, to people in your family, to people in the wider community and to their age peers? What is it that people get from knowing them? So the belief according that the person has something to offer, that your family member has things to offer, that people benefit from getting to know them. Uh, your belief that there are actually community members. There actually are non-disabled people who want to get to know your family member, who want the opportunity to receive the gifts that they have to offer that they would cherish the opportunity to actually get to know someone and to even befriend them or even love them.
09:39 [Angela Amado] Get to love them. And then that’s another fundamental theme that I have found. And then the other theme, the other main thing that I have found is that there’s often a separation between the disability world and the community world. And so bringing people together between those two worlds really means that you have to reach out, you have to ask people, you have to invite people. Community members don’t know that they’re needed, that they’re wanted, that, um, that they would love this particular opportunity to get to know people. So I would say those are the three main themes that I have found is looking at gifts. Uh, what it is that you believe in this arena and the reaching out and inviting or asking people to come together.
10:29 [Allycia Wolff] So often when I am facilitating person centered planning meetings, I encourage families to invite everybody in their network. You know, everybody from aunts and uncles to cousins. And then sometimes families will say, well, we’re not that close with them. We don’t, we don’t want to ask them. We don’t want to like encroach on their personal time. I know that they’re busy and then almost every time somebody does choose to invite that aunt and uncle or cousin that they were waffling on, the cousin will be in that meeting and we’ll say, Oh, I had no idea you love to ride horses. I want to ride horses. Let’s do that together and so the most difficult piece for a lot of people is actually asking and getting people to be involved and to be there. That’s the most difficult part. But almost always it leads to people saying, oh, I had no idea, but I want to be involved. I just don’t know how to ask. When it comes to that, that worry and concern about asking, what do you have to say to that?
11:31 [Angela Amado] Well, it’s difficult for many, many people to ask other people for anything. It’s like, it’s a common human experience about the difficulty about asking. Um, in terms of like our fear of rejection or fear of imposing on other people. So family members who, uh, have a lot of experience on the surface system. Many family members have gotten used to asking. As part of the requesting support, as part of advocacy is having the courage to actually ask. And uh, but it’s a whole other world to ask besides asking professionals. It’s a whole other world to ask, uh, the people that we know in terms of getting involved. But it does really take courage and it takes, I encourage people to try it out to practice or to think about what it is that they really want to say and to, and to risk it. So one of the lessons I learned early on in my very first project was a staff person that was supporting someone and the staff person whose name was Danielle, she had a foreign exchange student staying with her who was from Argentina.
12:52 [Angela Amado] And there was a dance coming up and she had this idea to ask Pablo if he would take the person she supported, her name was Vicki, if he would take Vicki to the dance. And Danielle went through this whole world about like, how it’s crazy. He’ll say, no, it’s like too much in terms of asking him. But she did ask him and he said, sure, no problem. Right, no problem. And uh, he took Vicki to the dance and it was, he had a great time and he got together with her afterward in terms of having dinner with her and things like that. But when Danielle came back to our next meeting about this and the first project we had, when she came back to the next meeting, she said, I learned something very powerful. She said, I learned that it never hurts to ask. And so I learned that in the first project, I brought that into every project that I’ve had since then, including our projects with family members about just the courage just to ask and to remember that lesson, which is that it never hurts to ask.
13:55 [Allycia Wolff] Yeah. It never hurts to ask. And creating an opportunity where people want to say yes, will make the ask for you and ask on the other person the easiest way to say yes. Right? So you want to ask something that somebody wants to say yes to. So I already like horseback riding: ask me to go horseback riding, I’m gonna want to do it anyway.
14:19 [Angela Amado] Right. And one of the things we, one of the things we’ve learned and kind of developed is just like what makes a difference when you ask, right? Like when if somebody asked you to do something, what would have you more likely to say yes, right? So to actually identify that for yourself, what has you more likely to say yes. Depends on the person who’s asking. It depends on how much are they asking you to do, is that something, is there something really in it for you? So really figuring out those things of time in terms of asking or inviting someone to, to be a part of somebody’s life, to do something with them, it could be something really simple to start with. Many people say like, oh, can I try it first? You know, and then see what it’s like. So that’s our experiences about asking anyone for anything.
15:12 [Allycia Wolff] So you have worked across a few decades and done a few different studies and I would like to hear a few stories from those experiences. Angela for, for all of the listeners here, Angela is a very skilled storyteller. Uh, and so I just wanted to give her an opportunity to share some of the positive experiences that she’s had over the years in seeing people make friendships and changing their lives.
15:36 [Angela Amado] Okay. Um, so one particular story I’ll tell is about somebody who was younger, somebody who was the daughter of a friend of mine. His name is Jeff Strelley, and he at the moment, he lives in Colorado and he had a daughter who had a very, quite severe disability. She had very limited physical ability and she didn’t use words to communicate. And when she was five years old and in kindergarten, they actually had the first IEP meeting for her. And the way that the staff at the school saw Shantelle was only about what it is she could not do and what her limitations were. And Jeff and his wife Cindy, they made a commitment that they were not going to have another meeting where with only the professionals that they were going to bring in some of Shantelle’s friends from kindergarten. Some of the other girls who knew her in kindergarten. And so the next meeting they had, they brought in some of her age peers, right? Some of her friends. And Jeff said he made a commitment that they would never have a meeting about Shantelle without non-disabled kids who were her own age. So to get the perspective of what does a, what does a kid who doesn’t have a disability, what is normal for them at five, in junior high and in senior high, et cetera.
17:11 [Allycia Wolff] What a good idea.
17:13 [Angela Amado] Yeah. What was always the perspective and, and how did her friends see her? How did her- cause they knew Shantelle had friends who didn’t have disabilities. And so, uh, how did her friends see her was very different than how the teachers and the professional staff saw her. So the other kids came in and just said, um, and just they saw what Shantelle’s gifts were, what it is, and they could read her and how she reacted in certain ways that even the professional staff didn’t appreciate. So she ended up having a very different life. So throughout grade school, elementary school, she was always in an inclusive class. In high school she was in an inclusive class and then in high school they started talking about Shantelle going to college and they worked out her going to college and then when she went to college, the other kids said, you know, the other kids told Jeff and Cindy, the parents, she can’t live with you anymore.
18:20 [Angela Amado] Right. She’s got a life to live on campus. And so that’s great. So on campus the girls who were her friends got a house together. That was off campus. So class that, sorry, a house that was near the campus. It was a small house. Now when Jeff and Cindy visited it, they were quite concerned that it was right across the street from the fraternities, fraternity houses, like any parent be concerned about that. But the girls who had befriended her and who really loved her, they, you know, they told Jeff and said, no, this is the house. Jeff and Cindy kind of wanted a house that was in a better condition or whatever. But so Jeff and Cindy as the parents listened to the girls who were her friends and what was good for Shantelle.
19:21 [Angela Amado] And then she also ended up being a business owner and they actually started a whole other business. So after college she also became a part owner of a business and because she hates to get up early in the morning. And so it’s different to be the owner as an employee in terms of what time you could show up. So these girls have taken her, have gone on trips with her to Cancun and Jeff said they’ve got pictures of her at these parties like on spring break in Cancun. And so she actually had a very different life.
20:12 [Allycia Wolff] What a beautiful life.
20:13 [Angela Amado] A beautiful life. And the story about her is in one of the books that I edited, but Jeff Strolly, he’s also written other things and he presents the story as he says, my other daughter, my second daughter. And he contrasts the life that Shantelle has with the professional life where she’s only seen as her disabilities and what it is that she can’t do. So it’s like my two daughters, these are like two, two completely different human beings in terms of those particular perspectives about what her friends say about her as a college student, as a business owner, and a daughter, that’s only the professional lens of daughters.
21:03 [Allycia Wolff] What a fascinating story. I think that speaks really heavily to how relationships and friendships can impact our lives because if she wouldn’t have from such an early age, demanded that her friends be at meetings about her life, and so he was setting this precedent from really early on that I’m going to expect that you have friends and this is going to be like a collaborative effort. I think that’s a really, really great story. Yeah. Yeah. Thank you for sharing. Hopefully he’s okay with you sharing that.
21:37 [Angela Amado] Yes, I’m sure he is.
21:38 [Allycia Wolff] Okay, good. This, this process of creating friendships, just like you said in your last story about Shantelle is lifelong, right? Like it takes constant effort to be working on friendships and that’s true for everybody, right? Like, I think about my life personally. I spend so much time every week just touching base with, with all of my friends. I know that I personally am a really extroverted person, so I have a lot of friends it takes a lot of effort. But as this lifelong process of keeping relationships takes a lot of work, what would you suggest to families and to people who are trying to do that intentionally?
22:25 [Angela Amado] Well, I’d say one, one thing is that some of us have friends that have been lifelong friends. Some of us have friends still from high school or from college. Some of the families that I worked with, there was a project we had where we worked directly with families about what could they do to support friendships for the young adults or adult children. And one of the things that the parents found in that project was that they could go back to people who had been friends with their children in high school and reconnect them. So a big avenue is actually looking at where are there people in somebody’s life that you could actually reconnect with. Um, there was another parent that I knew who, she actually reconnected her daughter, this was in Minnesota, she reconnected her daughter with a young lady who had been her babysitter.
23:23 [Angela Amado] So this was a young girl again, who had quite severe physical disabilities, who wasn’t that capable. And there was a girl that they had had, she’d been her babysitter. And when the daughter was in her twenties and it was time for her to move into her own place. The mother actually reconnected with the woman who had been their babysitter, who was now married and had a couple of babies of her own and they set up a whole living situation where the daughter, whose name was Missy, where the daughter could actually move in with the woman who was now a young mother. And it was a great situation for the young mother because that allowed her to stay at home now with her babies and she, where she didn’t have to work full time. So she was supported in terms of a support situation as the caregiver.
24:22 [Angela Amado] So she could use waiver money to actually be the caregiver for that daughter. So anyway, that was a situation about reconnecting in terms of ending up in a life change. But I would say, but I would say so reconnecting with people. But the other thing to remember though is in terms of lifelong or longterm relationships, is that all of our relationships go up and down. Right. I was friends with people that I worked with in previous jobs that I don’t see anymore. Right? So as my work situations have changed over the course of my life, my friendships have changed over the course over the course of my life. Or I was friends with people that I played volleyball with when I was younger, as was on a volleyball team. But I don’t see those people anymore. Or as I have moved towns or situations, you know, my friendships have changed.
25:17 [Angela Amado] So it’s also important to remember that it’s not that bad or it’s a life factor for everyone when we stop being friends with people. And then we develop new friends, new friendships. And then one has to you could say start over again about looking for in this current situation, who is somebody who could, who has the same interest, who could benefit from getting to know the person. And as people’s life situations change, new people, new people come into their life, new people come into our lives that we make new friends with people.
25:56 [Allycia Wolff] It’s a constant ebb and flow and it always takes a little bit of work. What about, a lot of people have the concern that somebody doesn’t have the social ability to make friends or to be like socially appropriate. And that’s a big concern about like helping somebody with a disability, make friends with somebody like in the community. Right. What do you have, you spoke to it a little bit with Vicki, but what do you have to say about that? About like social skills being undeveloped?
26:32 [Angela Amado] Every friendship, every relationship is two ways, right? So, or sometimes even we’re friends in a group of people. So when someone doesn’t have social skills themselves, I always direct people to look for where could you find community members who will come? I say this way toward the person, right? The person with the disability isn’t going to go toward them. Where are you going to find the community member who’s going to come toward the person with a disability? How can you invite them? How can you find a community member who would appreciate the person, whether they have social skills or not. Where can you find a community member who will tolerate or not be bothered by whatever it is that the person is doing that doesn’t have that particular social skills. And sometimes we have to talk to community members about that.
27:27 [Angela Amado] We have to like talk to what the person has to offer, what the community member can see in the person. There were some colleagues of mine who had done some research in a high school situation for example, and um, they were interviewing the non-disabled high school students about what they saw about the kids who had disabilities, the kids who were special-ed students. Right. Were the high school students open to befriending the special education students and just what did they see about them in general? And I remember in one, in one case there was a young girl who had down syndrome who was always sort of falling over the boys who didn’t have the disabilities. Right? And they were like, they weren’t that appropriate with them. They weren’t socially appropriate with them and they were saying things, like go away just so like you and will you be my boyfriend.
28:31 [Angela Amado] And they were like saying things like that, and the boys without the disabilities didn’t know what to do. They were like embarrassed about it, but they like, they just sort of kept their distance or tried to keep their distance. It was embarrassing or awkward for them. And so the people who were doing the research, the special education faculty, you know, the teachers, professors who were doing the research about it, they said to the, they said to the boys without the disabilities, they’d say, well, what would you say to a girl who didn’t have a disability? Who was doing that? And they said, well, the boys would say they, well, I would just tell them to cut it out, you know, or I would tell them so. And the professors said that, well, why didn’t you say that to the special education students?
29:25 [Angela Amado] And they said, you mean I can, you mean like I could just like say the same thing to, so they were held back because they thought they had to treat the special education students specially or that they couldn’t do something with them. So it was a whole lesson for them to learn that. So sometimes we have to, when we’re asking a community member or a non-disabled student or person to become a friend, sometimes we have to like let them know what it is that the person who has a disability is going to do. And there’s many people, many community members I found people without disabilities who they’re not bothered by it. They just like, need to know, like I personally have a friend who like, she’ll always, she’ll ask me to, when we go out to eat, she’ll ask me to get her like three desserts, you know, or she’ll ask me to buy her something or you know, or like, or I know to say like, well no, I’m not going to do that. Right. But you know, in terms of talking to other people who would be her friend, you’d be telling them like, well no, you have to just tell her no that you’re not going to do that and not be bothered by it.
30:38 [Allycia Wolff] Absolutely, and I think it goes back to the point that you made earlier about believing that every person can make friends and that there’s somebody out there that wants to be friends with that person and will see that value. When I give presentations, sometimes I say like think about somebody that you hate. Think about somebody that gets under your skin and you just can’t stand whether it’s at work or like at your gym, like just somebody that really, really bugs you. You don’t like them. But then if you take yourself out of the equation, that person most likely has a whole network of people that love them and appreciate them. They may have a spouse, they may have family, they may have a huge network of friends. Just because you don’t like them specifically doesn’t mean that there isn’t that ability for other people to. There’s a lot of different people.
31:35 [Angela Amado] And the other thing that I’m finding these days compared to when I started working on this 20 or 30 years ago, these days when people ask me what I do and I talk to them about people with disabilities or I talk to them about being friends with people. Like years ago, I would find more community members would say to me something like, oh, you must be so special. Right? But these days I hardly ever get that response. These days much more people will tell me about somebody with a disability who’s in their family or they’ll tell me about someone with a disability at work, somebody that they know through work. You know, I gave a presentation at the Columbus group in Rochester, Minnesota and I was talking about what it is that they, that we were about and about somebody joining the Columbus group and they immediately, the people immediately started telling me about this.
32:47 [Angela Amado] Many of them do. This young man with disabilities in town who was like a local figure and who was involved in kind of like everything in town. And they started telling me about other people in town. And then one of the guys after the meeting started telling me about that he used to drive the yellow bus, the special ed bus and how much he loved the children. And I talked to him about like getting involved again, again with some, with people like that. So people with disabilities these days are much more seen. They’re much more known. They’re like much more in our community. People have much more direct experiences. There’s many more movies about people with disabilities, more TV shows about people with disabilities. People know a lot more, in Minnesota these days, about people, and our wider community does. And we still want to let them know about the opportunities to get to know someone and that we really want them, that they’re really needed in terms of people being befriended. Because sometimes you still see people like who think people are taken care of, that people are being taken care of, but know that that we really want them to have more social life.
34:13 [Allycia Wolff] I truly believe that we all do better when we all do better and so when our community rallies and supports people with disabilities and sees people for their strengths, then everybody’s going to be doing better. You know, segregation is a part of the past and we’re still working through that. I really believe that we’re still making a lot of strides forward to step out of that institutional frame of mind. But I have been in this field now for 10 years and just like you said, even just in my 10 years in this field, I have noticed a big shift in like: oh, you’re so special to be working with people with disabilities, to like: Oh yeah, great. That’s, that’s a cool career choice. And let me share with you some of my experiences. As people are listening to this podcast, they’re probably thinking that they want to make some steps forward and helping their child or loved one make friends. If you had a takeaway for people, something that somebody could do within the next few days or month, what would you say? What would you give to families?
35:22 [Angela Amado] I would look at two things. One is I would look at what are your child’s interests or your family members interests and what are their gifts, and then I would start on the second thing, is start looking for people. So looking for the people who are around you, like you said, look at the extended family for example, you could also start looking for based on your child’s interests, where would you find people who share that same interest, given their gifts, where would you find people who would appreciate those gifts? That’s one way about building the network, right? Building people’s networks is where do you find people with the same interest because that that’s a way we all find people. That’s the way we all build our networks, whether our interests are in sewing or in volleyball or in politics or in sports or in…
36:21 [Angela Amado] That’s where any of us find our, uh, it’s one rich resource. It’s not the only avenue, but it is a really rich avenue for finding people who could be part of somebody’s network. If they’re not, now build the opportunity for them to get to know people and add them into their network. So those are the, those are the two things that I would look for is like, or the action, sorry, I would take is their interests and their gifts and then where are the people, where are the people now who are in their life, could be brought in more deeply and more intimately into their life and then where are people, where could you find people who share that interest and gifts?
37:08 [Allycia Wolff] Wonderful. Thank you for sharing your time and your expertise.
37:16 [Allycia Wolff] If this episode inspired questions for an advocate at The Arc, please give us a call at 833.450.1494. On the next episode of Focus on the Future, we are going to be talking with Honoring Choices Minnesota. This is a nonprofit organization that covers healthcare directives and everything that you need to know about a healthcare directive. What is it? What does it mean to plan for the last stages of your life? And who should be a healthcare agent? We’ll answer all of these questions and more.
37:54 [Allycia Wolff] 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. And if you are willing, shoot us a review, tell us how we’re doing and what you’d like to hear in the future. And additionally, if you’d like to support the podcast and our mission, you can donate at arcminnesota.org/podcast. Our podcast music is composed and recorded by Micah Kadwell, Micah is a talented guitarist from New Brighton, Minnesota who has autism. Thank you Micah and thank you to the team who helps put this podcast together. Thanks everybody and have a wonderful day.