You can listen to this podcast episode on iTunes or Spotify. Read the transcript here.
This is the second half of an interview with Selena Blake, the Director of Emerging Practice and Evidence at the Durham Association of Family Resources and Support (DFRS). In the first half of the interview we review the first four of ten principles of DFRS. You can find that interview here.
Taking a bold, clear and transparent position about your principles is an incredibly powerful thing to do whether you have a loved one with a disability or you work for an organization that supports people with disabilities.
A set of principles can both provide guidance and inspiration to others and also serve as a tool for accountability.
In this episode, Selena and I talk about principles six through ten.
Durham Family Resources and Support has generously agreed to share their copywritten principles with you. You can download the principles!
Leave a comment below your opinion of these principles. Do you share them? Disagree with them? Think that DFRS shouldn’t be so principled? Let’s talk about it! Leave your thoughts in the comments below.
Genia: Welcome to the Good Things In Life podcast. I’m Genia Stephen. This is part two of a two-part episode with Selena Blake from Durham Family Resources and Support. If you haven’t heard part one, you’d probably be better off going back there and starting there, that’s episode 24. This is episode 25. And today we’re picking up where we left off with principles five through ten. Now, if you want to listen to this episode and you haven’t heard the previous, we’re talking about the principles that Durham Family Resources and Support uses in order to guide the work that they do with people with intellectual disabilities and their families. Having principles that guide your work serve a number of really important purposes. One is that it makes it clear to everybody working in the organization and everybody that comes into the organization for service, all the families, exactly what this organization is basing its work on. So, there’s a lot of really good transparency there. Another thing having principles can do for you is it can help you to measure whether or not the work that you’re doing is measuring up to the principles that you hold and that you believe in. And that’s really important. And another thing that having principles clearly laid out provides you is also a bit of a measuring stick when things get cloudy. For understanding whether or not some of the principles and values we have, but we’re not totally conscious about when those things are coming out in our actions. So, whether you’re an organization or whether you’re a family member and you are thinking about how to make decisions and how to guide your own actions and advocacy and support for a loved one with a disability, you can use a set of conscious, intentional, transparent principles to guide you in your life and your work. It can be really helpful. So with that, we’re going to get right back into the interview with Selena.
Selena: Okay. So, the next principle is about relationships and I’ll just read sort of a part of it. Relationship is part of a rich, full life and provides essential safeguards where people are vulnerable. Ways to focus on developing the kinds of situation for relationship will arise will be interwoven into all discussion. So, I’m just going to leave it at that. But, that’s the next principle. And really what we’re saying is part of a rich, full, healthy life has to be grounded in relationship and any time we come together with families, a relationship with that is that the core of what we’re thinking about.
Genia: Yeah. I mean relationships really are a fundamental human need.
Selena: Absolutely. Isolation is a social determinant of health, right? So, if we are isolated and alone, we know that people are unwell and unhealthy and relationships are a fundamental need for all people.
Genia: Yeah. Yeah. I’ve been talking about this quite a lot lately. There was some research done in the last few years that showed that the average person has about 150 important relationships in their life. And yet people with disabilities have an average of 24, so less than one fifth the number of …
Selena: That’s startling. And again, that may or may not indicate, like, I’m not going to say there’s any correlation, but when people do not have many opportunities to be in community to get afforded the gift of abundance in community, we will have those contrasted numbers. When we’re in service or we are geared to service, there’s only so many narrow relationships that will form and they’re typically not life fulfilling relationships.
Genia: Right. Yeah. Yeah. And you know, I think …
Selena: And so …
Selena: Can I ask you a question?
Genia: Yeah, of course.
Selena: Around that research with the 24 relationships, I would even wonder about, are those freely given, natural chosen relationships? Right?
Genia: Yeah. So I don’t remember the details, but I’m going to hazard a guess and say in both the hundred, the number for average people of 150 and people with disabilities at 24, that would include some paid people, but people who will show up for you if you need them, but where the gap would be, there, you know, there may be 20, the average person perhaps has 22 paid people in their life and you know, 120, however many is left, unpaid people and people with disabilities. We just know that they do not have a great wealth of unpaid and freely giving relationships. And we know that the relationships, that a lack of relationships, like you said, it’s a social determinant of health. You know, isolation is a social determinant of health. People are lonely, they’re isolated, they have lower life expectancies, fewer potentials and opportunities because our relationships are how we, really, our relationships are the foundation to new opportunities.
Genia: Even so far, you know, even if you think about something like a job application or a school application, people might be thinking, “Oh, well I didn’t know anybody at, you know, at the school that I went to or I didn’t know anybody in the company that I worked for,” but somebody gave you a reference. You know, like somebody helped you to understand how to approach them or so, you know, like our relationships really are key to opportunities.
Selena: They are. And if we have, you know, if I have 150 opportunities to, you know, of a pool of people to sort of, to draw from, I am just automatically going to have a healthier life. And I think that’s also been shown in sort of, in the medical and …
Selena: … health research that has come out recently as well.
Genia: Yeah, yeah. Yeah. And relationships are, you know, we’ve, we kind of already have covered this, but relationships are also, what keeps us safe because our relationships are how we get through hard times. Right?
Selena: Yeah. And I’d like to say, yeah, that how we get through hard times that the mutuality of relationships is important. And I think we need to touch on that because all people need to feel like they’re needed.
Selena: Right? So, all people need to have that chance to be relying on and dependent on. So, when we’re talking about relationships, we mean mutual relationships and we mean that I recognize what I get from you and you recognize what you get from me. And I think that part’s really important. We’re not talking about one sided relationships. We’re talking about recognizing the value in relationship that is freely given and recognizing that it is mutual.
Selena: Yeah, that’s really important.
Genia: Yeah. And the mutuality of relationship is something that I think, I’m not sure everybody has opportunity to reflect on how powerful that is in your life. So, it’s not just what other people give you, but also your sense of how you contribute to other people. You know, I was recently at a workshop with Darcy Elks on helping people to develop a good life as defined by them. And it was a workshop for adults and mostly young adults. And I was sitting, working through a worksheet with a young adult, a young man with a disability. And, you know, we were brainstorming about what defines the good life. And I was expecting just the way the conversation had been framed, I thought we were going to have a conversation about, you know, what kind of job would be meaningful.
Genia: What kind of work and, or you know, I want more friends. Like something really kind of tangible like that. He said lots of really, really insightful things. But two of the things that he said at different times in the conversation was “I want my life to have meant something”.
Genia: “And, I want to be needed.” I was helping him to imagine, “Okay, so you have a good life, you know, like, imagine that and then let’s tell me what that looks like.” And those were two of the things that defined for him what, how he would know that he had a good life.
Selena: Wow. Right.
Selena: It just goes back to, in a way, just purpose, right. He got what real meaning and purpose in life is, and we all want to be able to leave some sort of legacy.
Selena: And Yeah. And know that we, that we matter.
Genia: Yeah. Do you think, Selena, that there is anybody who is so profoundly disabled that they… that this is not relevant to them?
Selena: No. I don’t, I can’t. Yeah, no. I, this is universal. This is not … we’re not talking about disability.
Genia: You can’t be impaired in this capacity.
Selena: Right. We’re, we’re talking about just universal things that we all need. And, but we are just saying that when we’re, when it comes to people with disabilities or other marginalized groups, we might, we need an avenue to help life flourish because people are put on the margins. So, it’s that – how do we move people from the margins off the margins, right?
Selena: It’s into the embrace.
Selena: Yeah. And that is for everybody, that has nothing to do with how disabled somebody is! In fact, I would say that the more profound the disability, the more conscious and the more active we have to be around being sure that we’re vigilant in acting on these principles.
Genia: Yeah. Great. Okay. So, tell us about principle number six.
Selena: So, principle six, our goal is to get beyond mere presence, just being there and to look at authentic participation and real incomes inclusion. And these things are only possible when we help people to hold and build upon valued rules, which include contribution, take place in community and involve other citizens. Okay. Fundamentally, this principle is about belonging and our need to belong. And, there is a difference. And Genia like, you will know this as a mom, there’s a difference from being, sitting in a classroom to being engaged in the class. So, there’s a real difference in, and sometimes I guess what I’m trying to say is sometimes people think that we are automatically equating inclusion to relationship and that doesn’t happen. What I’m thinking is that belonging is what matters. That’s what the principle is saying. And, we’re saying that when we have an opportunity to assist people into building their value roles, that I’m real, belonging happens. So, not pseudo participation, actual authentic participation. And, that means that the other people have to believe in what’s happening. Yeah.
Genia: So, I wonder if you could take a step back and just talk about what a social role or valued social role is for people.
Selena: Oh, okay. That’s great. Yeah. The value of social role is the way in which we identify who we are. It is what we do. It’s our place in the society, in our family. So, a valued social role tends to be, you know, people might call on their occupation, they might call on what their family role is – a mom, a sister, a brother. They might, you know, they might be a home owner. So, it’s part of who we are, valued social roles are the things in which we describe who we are to other people.
Genia: Yeah. And so, it is the way that we relate to one another as opposed to just an activity which we may do sort of parallel to other people, but an activity is over when the activity is over, whereas a role persists and has a lot of implications. So, when I think about all the tasks or activities that I’ve done today, because I’m a mom.
Genia: Just doing any of those activities alone is not as meaningful as being a mom and also I can be a mom and potentially have days where I do none of those activities. And yet, I still reap the benefits of being in relationship, like being, I shouldn’t say being in relationship because it’s, not all roles are necessarily so relationship driven, but you know, I’d reap the benefits of being a mom and the responsibilities of being a mom and if I haven’t done the laundry today or washed a face or …
Selena: Yeah. So, roles incorporate activities and responsibilities and I think, a valued role, I think sometimes to focusing on what is the responsibility. And this is where, people can start thinking about valued roles when their children are really, really young, and what are the responsibilities that come with them. Right? Like being a good son, what does that mean? And how do we teach our children to be a good member of their family. And that just comes with, you know, remembering to make a grandma a card for her birthday or just all of, so that’s an activity, making a card, but being, you know, a good son incorporates that, right? And remembering on mother’s Day and all of those things are responsibilities of being a, of that valued roles. So …
Selena: It’s just important for me. I always have to bring myself back to not only the activities that are involved in a role, but the responsibilities. And, I think that recognizing that people with disabilities have responsibilities as well, is important because that puts us all on equal footing.
Genia: Right. Yeah. Yeah. And so, I just, I want to just sort of bring to mind the very pretty superficial and obvious but really relevant to lots of people with disabilities lives is that authentic participation and belonging is not community activities or you know, going to the mall or you know, like existing physically in space and common spaces is not what authentic participation means.
Selena: Right. Well that, and I’m so glad that you bring this up Genia, because authentic participation also means that, in my opinion, that it’s putting the person in their best light or helping them be in their best light. So, just because a person likes singing does not necessarily mean that they’re singing is a talent show worthy. And I might get in trouble for saying that, but I think that we also have to safeguard people’s image in terms of what is authentic participation.
Genia: It’s not tokenism. That’s really what you’re getting at.
Genia: Right. Yeah. Yeah.
Genia: So, you can be authentic, I think it also, it’s not always competency based, right?
Genia: Like, you can authentically be a team member and really have almost none of the competencies of related to that sport for example. But it really does mean, you know, you really authentically belong in that place. And I think one of the things that implies is that it brings out, I can’t remember the exact words you just used, but it holds somebody in their best light. You said it better than I’m saying it, but it also, once there is actual authentic participation and inclusion and belonging, then there is much more tolerance when you are not your best self.
Genia: Right. Once you belong.
Selena: Yes. Yeah. Once you belong, you’re allowed to have a bad day and the bad day doesn’t define you.
Selena: Right. Yeah. Yup. Yup. That was well said, Genia. Thank you.
Genia: Okay, so principle number eight,
Selena: Principle number, actually I think we’re at seven.
Genia: Are we? Oh, we are. You’re totally right. Sorry.
Selena: … the decision making,
Selena: That is an essential part of listening and the learning process and the voice of the individual is important and shared decisions will be made among the important people in their life. So, I know the other day, Genia, you and Audrey Cole did an excellent podcast around. Yeah, it was brilliant around supported decision making. And fundamentally, this is where that principle is rooted in, ensuring that, you know, the person has a voice in their life and that, and when, I always sort of think about from child to adults and ensuring that our youngest children have the opportunity to have choice and exert their will and preference and that we’re nurturing that within our children and we’re listening deeply.
Genia: Yeah, it’s pretty profound if you sort of run through or indulge in a thought experiment around if you observed somebody who is an adult with an intellectual disability and you can, who has not had the opportunity to make choices or decisions and you think, how might the person’s capacity for decision making or responsible choice making be different at, you know, if that had started with reasonable assumption of risk. You know, not abandoning people to undue risk but you know, reasonable amounts of autonomy. It’s really, I think when people are saying, well, this person is too disabled to make a decision about a particular topic. That may be true. There are lots of things that I can’t make decisions about because I don’t have the capacity or I’m not well informed enough or, you know, there’s all kinds of reasons why I might not make very good decisions, might not be well positioned to make a decisions about any number of different things. But, I think it’s highly problematic when we say that somebody is too disabled to contribute to their decision making or to make choices if they’ve never ever been allowed to do so then.
Selena: Exactly. Yeah. We all need those opportunities in order to learn and practice. Right?
Selena: Practice is important. And that has to happen from when a person with a disability is a child and throughout adulthood. And, practice also means that, and I’m not encouraging anything irresponsible here, I’m just saying practice also, it’s back to the dignity of risk. It means that sometimes we make the choice that might not have been in our best interests.
Selena: Yeah, exactly.
Genia: Yeah. We just have to look at fashion in the 80’s for a great plethora of examples of that!
Selena: Exactly. And everybody lives through it.
Genia: Right. Yes.
Genia: So, yeah. One of the things that Audrey said, and Audrey’s interview is episode 21 if people want to go back and listen to it. One of the things that Audrey said, that I really thought was powerful is that we rarely make decisions independently, any of us. That generally the sort of natural and organic process for decision making around anything significant for people is some sort of reaching out and collaborative decision making process. Even if ultimately we make the decision at the end on our own. We really do seek and sometimes we don’t even seek it, but we get it people’s opinion about different options or different choices we may be facing. And another thing that she said that I had not really thought about was that there are actually, usually very few major decisions that are sort of legal, high legal level decisions in our lives, and thousands or more very small daily decisions that even people with very significant disabilities very clearly make decisions about and express their preferences about. Although not always are they listened to. But the decision, the capacity for decision making and choice making, I think sometimes when we think about it like a much higher level thing. But most of our decisions are not very high level things and if people are really listened to on those daily decisions and preferences, it’s actually much easier and not that hard to extrapolate what this person prefers and would choose for some of those higher level, you know, legal and more complicated decisions. And by listening every day, you actually then, are involving them in the decision about those not everyday decisions.
Selena: Right. Yeah. And what I also appreciated was in thinking about that yet, we all, you know, we do have the everyday decisions, but some other decisions, all of us talk to other people or confer with other people. And again, back to those diverse relationships, right?
Genia: Right. Yeah.
Selena: So, it’s also having other people know what are those every day choices that, you know, your child make so, that when other times come up, they can weigh in and not only can they weigh in, but as a parent or a loved one, you can actually, thoughtfully consider and appreciate that they may have, you know, some credibility to what they’ve seen and what they’re contributing to that decision.
Genia: Right. Yeah. Okay. So now we’re on eight, I think.
Selena: Now we are on eight. And this goes to what you were just saying, Genia, a follow up to seven. Simple everyday choices are given within the everyday limitations we all experience. But these are also within the larger context of figuring out how each person can truly be involved and being a part of the governing of the direction of their lives. So, it just, it goes back to exactly what we were just …
Genia: We really just were talking about that.
Genia: Okay. So let’s move on to nine then.
Selena: Can I say one thing about that?
Genia: Oh, of course you can. Yes, absolutely.
Selena: My one comment around that is that I want to ensure that we’re not perverting self-determination. Right? And sometimes, this can be misconstrued that we’re saying that things are, you know, one way and not done without them, without the context of family or allies.
Selena: So, just an elaboration.
Genia: Right. So on the one hand, the dignity of reasonable risk, on the other hand, we’re not talking about unrestrained choice, you know, total autonomy and choice making. Yeah.
Genia: You know, it’s funny… my argument for unrestrained personal autonomy is twofold. One, you know, with autonomy or with that freedom comes responsibility and our freedom or our responsibilities curb our freedoms. But the other sort of personal story I have around that is that, you know, when I was in my early twenties, I went through a bout of depression. And, it was very hard for me to take action that was to my benefit. And, you know, my family kind of rallied around and every day at five o’clock in the morning, my sister hauled my butt out of bed to go swimming or for a walk because I needed to, that was important for regaining my health. And she didn’t care one little bit about my personal autonomy. And to me it’s just that sort of example of like, only people who nobody cares about do people defend their right to unrestrained personal choice. The rest of us have people clamoring to say, what are you doing? That’s a terrible choice. I will not let you do it. I’m stealing your keys. I won’t let you get into the car and drive drunk or what. We can come up with any number of …
Selena: Yeah. No. Absolutely … Yeah, that’s right. Judith Sandys talks about this whole notion around nudging and that, you know, they exist, right? We all, we have those people in our life that will, you know, push us when we need to be pushed or help us consider something that we haven’t considered. And, really sometimes save us from harm.
Genia: Yup. Absolutely.
Selena: So, yeah. So, thanks for letting me just touch on that. It’s something that comes up often.
Genia: It does. Yeah.
Genia: All right, so …
Selena: The good life in community is for everyone regardless of ability or support requirements and in fact, may be especially powerful and suited for those with complex support requirements. So, you had asked a while back about, you know, people who may have really complex disabilities is this for everyone. And we say, absolutely the good life in community is for everyone. No one’s excluded from this. And I think, in abundant community we can figure out ways to make things work.
Genia: So, I think the, the only thing I really want to touch on around this point, I think the most poignant thing that we need to touch on is, do you think that it is actually, not from a principled way, but from an actual real life way, is that possible? Like for the parents who are listening to this podcast thinking, “Yeah, that’s a pretty dream that the world works like that”. But do you see it happening in your families that you support in your organization or in your community?
Selena: We do see it happening and it gives us more and more drive to see it happening for more and more people.
Genia: Great. Let’s just leave it right there.
Selena: Perfect. Okay. So, number 10. Because we believe that ours is and can be an abundant community. Our search for belonging and relationship will seek out groups and opportunities where there are not yet people with disabilities because these will be richer with more unique opportunities with greater potential and where community members stand to gain the most benefits from coming to know this one person. So, that was important for me to completely read the entire thing. And okay. I just want people to remember that this is, these are our principles. This is what we act on, this is what families come to know when they walk through the door. That, this is the way that we plan and think about and think about things.
Genia: And that last principle is sort of, it really speaks to the reality that it is much easier to truly welcome and support somebody with a disability if you’re not also simultaneously trying to meet the needs and provide support to 10 other people with disabilities. Exactly. It’s just harder. So, your potential for, you know, for really belonging is much greater when there’s a diversity of people. And your contribution is likely to be, is likely to stick out more.
Selena: Yes. Stick out more and be authentically received.
Selena: Yeah. So, I find that this principle is especially helpful when really new, when new families call us or inquire about, you know, maybe one of our groups are learning events are coming for a drop in with a facilitator, because from this principle, they know, without, you know, a doubt really that, we’re not talking about or looking for segregated from community. That’s just not, that’s not our direction. That’s not our expertise. That’s, that’s not where we’re going,
Selena: Not where we’re going. And, there are other places that are open and welcome to those conversations. And it’s not saying that we take things out of conversation completely because of course, we’re family led and we meet families where they’re at, but we’re also transparent about who we are and what we do.
Genia: Well, it also speaks to a mindset of abundance, that the community has an abundance of, of potential and opportunity and capacity to respond. So, you know, there are some, I’ve certainly had situations where people, they hear about something that’s going well, you know, they hear about a child who is, you know, really well included in a classroom or an art class or in a camp. And then all the parents of kids with disabilities sign their kid up for that camp, you know, because, and then the whole thing falls apart. Right? But this principle really speaks to a mindset of abundance and saying, this serves as an example that this can happen and it can happen well, and let’s find another place like that for the person that we’re planning with and for.
Selena: I’m glad you got that out from that principle, Genia. And there’s the part B, so to speak to that principle, which is the community also gains from …
Genia: Right, yes.
Selena: … a person with a disability, belonging and being part of and contributing and have a lot. And we have a lot to gain from being open and, to relationship in many forms that in fact, we believe that people with disabilities are fundamental to the wellness and health of our communities.
Genia: That’s great. Yeah. That’s great. And that principle, which is not one of the 10, that one sentence is not one of the 10, but that principle alone clearly stands to drive a particular positive sort of mode of support, right?
Genia: So, it really steps away from the idea of, you know, meeting needs and compensating for deficits and you know, that kind of thinking and approach. And it’s also, I think it’s one of the things that is a real struggle for parents when they first realized that their child has a disability, is that they have been told, they have come to believe throughout their life either, very overtly or subtly, that that principle which they held in their dreams of what their child’s life would be like, that that disappears. So that’s a really powerful reality to reintroduce as a truth to parents.
Selena: Yeah. Absolutely. And we see that. And that too is you know, a joy of being able to be involved in the work that I’m involved in is that we see that re-imagining and oftentimes it’s not even re-imagining, it’s just remembering.
Selena: It’s just remembering.
Selena: Yeah. Yeah. So.
Genia: Well, Selena, I think that’s a fantastic place to end. Thank you so much. I am, I’m really, really excited about how this turned out and really excited to share the principles of Durham Family Resources and Support with people listening. So, if people wanted to find out more about the organization or connect with the organization or with you, how would they do that?
Selena: Well, like many things, you can connect with us over our website and we have an excellent newsletter that comes out monthly. In fact this month, Genia, we have some information from your website that we’ll be sharing.
Selena: Yeah, so we have a monthly website and for parents who may be in the GTA Durham region, we have many family groups, or a few family groups that are open to all people. We do have a discussion around our principles before people come through the door. But, people are welcome and we also have a drop ins with facilitators and I’m always happy to have a conversation, meet for coffee, with another family in tow.
Genia: Awesome. So, Durham and the GTA is sort of southern Ontario, Canada, but the newsletter would have resources that are applicable kind of regardless of where people are, right?
Selena: Yeah. Absolutely.
Genia: I’ll include links to all of that in the show notes. Again, Selena, thank you so much. I really appreciate your time.
Selena: Well, thank you Genia. I appreciate the opportunity. Thank you.
Genia: I’m super curious. How do principles function in your life? Do you know what your principles are? Have you ever thought about writing them out? Have you ever thought about how your principles can influence your decision making? Have you ever had an organization that supports you, be super clear with you about what their principles are? I think it’s a really helpful conversation to have and I would love to hear your thoughts. Go to goodthingsinlife.org/025 and leave a comment at the bottom of the page. Let’s chat about how principles, both in an organization and in an individual family, can contribute to bringing the good things in life into the lives of people with disabilities. I hope to see you next week on the good things in life podcast. Take care.
Thanks for Listening!
Resources & Links Mentioned:
Durham Family Resources and Support
Underlying Principles For Planning And Implementing Good Lives
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Special thanks to Selena Blake for joining me this week. Until next time!