#024 Underlying principles for planning and implementing good lives – part 1 of 2 with Selena Blake

Genia:            Welcome to the Good Things in Life podcast. My name is Genia Stephen. Today on the podcast I have the opportunity to speak with Selena Blake. And I’m going to let Selena introduce herself. But the reason I wanted to talk to Selena is because she works at an organization that has established, and committed to, a set of principles that guide all of the work that they do. And I think that the set of principles and the logic or the rationale behind having the set of principles is a really powerful way to ensure that when we’re coming together to talk about disability, we’re doing it in a way that moves us forward in positive ways and that helps us to manage our mindset. So, Selena, thank you so much for joining me today. 

Selena:           Thank you for having me. 

Genia:            I wonder if you could just begin by introducing yourself and telling us a little bit about what you do, your background, your relationship over time with people with disabilities and their families.

Selena:           So, I have a background in social work, but I came to be with working with families that have children with disabilities about 14 years ago. And I currently work at Durham Association for Family Resources and Support and have been here for two years.

Genia:            And what’s your position there?

Selena:           I am one of the managers of family support and my specific department is around emerging practice and evaluation.

Genia:            So, I want to hear a little bit about the organization in general – what the organization does. But I also am really interested in your department as well and what you mean by emerging practice. But why don’t you explain first what Durham family respite does, what is the organization?

Selena:           So, Durham Family Resources is primarily a resource and support organization, and we think about people with disabilities in the context of family. And when we say family, we mean family, chosen friends, allies. And we are a family led organization and we are, as you had mentioned before, rooted in principles. So, we’re an organization that doesn’t do “for” families, we do “with.” We walk alongside families throughout their journey, helping to bring about the vision for their children, to have a good life in community with meaningful roles and contributions.

Genia:            And so, Selena, on a just really practical day to day basis, if you, I mean, you know a little bit about my family. I have a 13-year-old son that has disabilities. What if I sort of came the organization and knocked on the door and said, how can you help me? Can you describe what that might look like? Recognizing of course that, you know, it could look like many, many different things, but just to sort of frame that for people who may not have a sense of what you mean.

Selena:           Right. So, there are absolutely many avenues that families come to know about us. So, it might be that you have stumbled across one of our learning events and you come in and you meet us that way. Or you are a family who has a child and has been just looking online and come to see us and give us a call. And we then introduce a family, especially families with children. We introduce them to one of our facilitators here who sort of walks them through the different things that they may be thinking about and grappling with. And, it’s wonderful when we meet them when they’re really young because that gives an opportunity to help people to think about ordinary community because often once any label has been put on a young person, they are geared towards therapy and intervention. And so, if, they get to talk to one of the facilitators here, we are able to introduce them to other families and ideas that often are long put it in the back of their mind.

Genia:            Okay. So, you might help with things like when you said, a facilitator might help me think about different aspects of my life. So, things like I’m trying to figure out school placements or I’m trying to figure out what my son’s education looks like or maybe I’m, you know, trying to figure out how I can support, Will to make friends or what camp life looks like. And I’m sure for older, for older people you would also be talking about things like what does home look like and what does work life look like for the person and how they might be supported. Okay. And can you talk about the idea of emerging practice? 

Selena:           So, emerging practice came about with, just thinking about all of the ways that we might be involved with families that don’t just rest with a facilitator. So, emerging practice is a place where we try on and out different projects that augment the facilitation work that primarily happens here. So, we have a housing project that had launched out of the initiative from the housing task force, which is long over, but the organization and the board felt it was really important to continue to bring families together. So that’s considered an emerging practice. We have a family learning series called Making the Most, and that was something that we had tried out time and time again. And that falls under emerging practice as well as a biomedical approaches study group. And that came out of the work of some families learning more about conscious care and support and the work of Peter Marks. And again, we can bring ideas to families, but it’s often not helpful if they can’t come back and digest them. So, family-to-family learning and engagement is something that is really … in which emerging practices is really steeped in. It’s really fundamentally about our family-to-family engagement. 

Genia:            So, that’s interesting. So, family or, excuse me, emerging practice is really sort of the organization’s endorsement of experimenting and trying different ways of bringing people together for ongoing meaningful conversation that can help their loved one with a disability to build a good life basically. So, is it sort of like the emerging practice aspect of it is a commitment to thinking outside the box? 

Selena:           Absolutely. 

Genia:            Yeah. 

Selena:           Yeah. 

Genia:            Yeah, that’s interesting. 

Selena:           Constantly pushing ourselves to just do better by and with the families that are involved with us. 

Genia:            Cool. Okay. So, I wonder if you could talk about why the organization, like not what the principles of the organization are, but why the organization decided that it needed principles. And this may have preceded your tenure at the organization, but I imagine that it’s something that you would know about. 

Selena:           Absolutely. So, Durham Family Resources has long been steeped in Social Role Valorization. And we, you know, value the dignity and contribution of every human. But it is one thing to know that and say that and feel it, but we need a way to act and apply our values – and the principles allow us to do that. 

Genia:            So, one of the things I know Social Role Valorization teaches is that we all have values and they will manifest themselves in one way or another. And so, if we aren’t overt about our values and we have nothing to go back and say, this is the measuring stick by which we, well maybe not the measuring stick, but the quality control I guess, or the quality assurance so we say, are we doing this? Does it fit these principles? And if it doesn’t, even if it feels good or right or appropriate, you know, we need to stick with the principles that we’ve stated. And I wonder if you could talk a little bit about … I promised you I wouldn’t put you on the spot and now I’m, now I’m going to Selena, but we can edit it out! 

Genia:            I wonder if you could talk a little bit about how the organization is sort of rooted in Social Role Valorization, but specifically around the recognition that people with disabilities are largely devalued in our society and that a lot of that is unconscious. Like as it relates to this sort of establishment of principles that are written down and everybody is expected to be in alignment with them. I wonder if you could just talk a little bit about that. And thinking about, like not super high level, just I guess I just want to pick a little deeper at, like part of the reason why an organization benefits or any group of people or even individual person who’s trying to do good work on behalf of people with disabilities. The reason that they benefit from having a very intentionally created list of principles is because bad stuff tends to happen if you don’t. 

Genia:            So, things get really twisty. They get really twisty partially because devaluation of people with disabilities, which doesn’t mean they’re not valuable but just means that society doesn’t place high value on people with disabilities, that is very pervasive in our culture and it’s largely unconscious. So, we need safeguards in place to make sure that we can measure what we do against the principles that we want to be, that we believe to be good and valid. And not letting some of our unconscious devaluation or low expectations to be limiting or twisting our efforts. So, that’s what I’m trying to get. And maybe I just answered it for you. Maybe you don’t have to say anything about it at all, but I just think that that’s like, I don’t know. It’s one of those sorts of like laying some of the truths out on the table around. It’s not enough to just want it to do well, we need to be mindful of how our ableism or our sexism or racism or any of the -isms, which we are all subject to, how those manifests in the work that we do. Anyway. Now, I’m just ranting and soap boxing here. 

Selena:           Well, I think what you’ve said brings me to the whole notion around good intentions and how a lot of people get away with a lot of horrible things by excusing the fact that they had good intentions. So, I think with having a solid foundation of values and principles, we’re able to not only heightened our critical analysis of our own biases and judgments. When families come through the door, we’re also gently encouraging and having them think about their unconscious biases and judgments and the way in which we all have a tendency in some aspects of our life to devalue people. But we need to have a heightened awareness around that and that, and this is what having our principles does it. It keeps on reminding us that we have to have this heightened awareness because it’s not only okay to have it in one aspect of our lives. We have to be able to broaden it and see how it, how it impacts the entire community in various aspects and all marginalized people. 

Genia:            Yeah. And I can sort of hear listeners saying, “Oh, well. You’re accusing people of having these values” or “You’re trying to put principles and values on people that maybe they don’t have.” And so, I just want to sort of address in advance or sort of preemptively say, you know, I think the research is very, very clear in multiple research domains that humans make judgments about what is valuable and what’s not, who’s in, who’s out, who’s good, who’s bad, and that most of that functions in our minds unconsciously. And so, it’s not an accusation against any individual person, it’s just a recognition of the sort of nature of humans. And, and that’s largely unchangeable. Like what we value or don’t value. Who is good or bad? Who is in or out? Who’s like me or other. That can change. But the fact that we make those distinctions is just part of who we are. And I also, so, sorry, you were going to say something. 

Selena:           No, I was just going to say, absolutely. It’s part of the human condition. It is a way in which we innately have kept ourselves safe for, you know, thousands of years. 

Genia:            Yeah. 

Selena:           So, it’s not that we are trying to push our values or principles on anyone. This is not when people walk through the door, it’s not really, it’s not a forced choice. And I think one of the things that I appreciate most about working for an organization that does have values and principles is it allows us to be transparent. 

Genia:            Yeah, absolutely. 

Selena:           So, families coming in, you know, we go through this with them and then they know who we are. And they can, you know, they are able then to make an informed choice. Is this the path that they want to walk, you know, walk alongside in or not? And, I actually think that it’s a fair way to be with, actually even more than fair, I think it’s a respectful thing to be open and transparent about our values and principles. 

Genia:            Yeah, I couldn’t agree with you more. And I think it’s also relevant to point out that every organization or grouping of people has values. Like, it’s not like this organization has values and others just do not. That’s not true. This organization is just very transparent and communicative about it. And I think it was yesterday, Open Future Learning, is that, did I get that right? I think it’s openfuturelearning.org, which offers some online resources and learning opportunities. They have a pretty fantastic social media feed with some provocative memes, and one yesterday said, “If only service world got extra points for the number of times, they say person-centered thinking or person-centered planning” or something. And I just, I love that because it’s, you know, there’s a lot of talk and yet not necessarily a lot of transparency. So anyway, I love it. So, let’s get into the principles. I’m hoping that what we can do is you can, there’s a number of them, so I’m hoping that you can, talk about each one and then I might ask follow up questions to each one if that’s okay with you. 

Selena:           Absolutely. Absolutely. 

Genia:            Great. 

Selena:           So, we can just start from the top. Fundamentally, one of our principles is that life happens best in familiar and typical ways in ordinary community. And, our life is anchored from a place of home, we’d come and go from a place of home, our periods of rest come from a place of home, that’s just natural and ordinary community. So that would be sort of where we start from, ordinary. 

Genia:            And can you talk a little bit about why that needs to be stated? Like how does that, how is that different? 

Selena:           Well, it needs to be stated because a lot of the time in service land or in thinking about services for people, we think that things need to be othered. That things need to be special or different or apart from. So, ordinary community means that this is where people thrive. This ;is where death-life happens. This is, this is where the action’s at, so to speak. 

Genia:            Yeah. So, this basically, this principle stands in contradiction to the whole idea of special. 

Selena:           Absolutely.

Genia:            Right? Like stand in contradiction to the idea of “special needs.” It doesn’t stand in contradiction to the idea of impairment or disability, but stands in contradiction to the idea of special needs, special places, special services for special people. Yeah. 

Selena:           Yeah. 

Genia:            Okay. Awesome. All right. 

Selena:           And so, we always begin with our second principle, it’s important to always begin with the person and their interests. So, who they are, what lights them up, you know, how does the magic happens, so to speak, for that person; what is it that sparks them and allows us to assist in, and you know, in their learning and growth and you know, and thinking about interests first allows for common ground with ordinary citizens. 

Genia:            Right? Yeah. I think that’s really, that one principle number one around, you know, life starts and ends in sort of the typical community and home environment. Principle two is, is deeply connected to that because how we relate to each other and how we develop our friendships, you know, whether we’re likely to have a second conversation after we meet somebody, you know, is really based on the common points of commonality that we have discovered with each other not around a diagnosis. 

Selena:           Absolutely. And not around difference. 

Genia:            Right. 

Selena:           We make strides together in commonplace, in common ground. 

Genia:            Right. I should have, actually, I need to correct myself. It could be that one of our commonalities is a diagnosis, that is absolutely, potentially a commonality. But certainly, it is not the only place that we find commonality in our life, right? Like, if I think about my own life, when I have had particular health issues, for example, you know, when I was pregnant, you know, I wanted to connect with other pregnant moms, but it wasn’t the only people that I connected to. 

Selena:           Right. Absolutely. 

Genia:            So, there’s starting with the whole person, like what are their, all of their interests and not saying you’re pigeonholed by only one relevant form of identification. 

Selena:           Right. And really, it’s our interest that can spearhead our contributions. Right. 

Genia:            Interesting. Yeah. 

Selena:           So, that’s why it’s also, you know, that’s where it is the place to start, I think too. Because you’re absolutely right. Just, you know, because we may share a label or a disability, it might mean that we’ve had some similarities in our experience, but it’s in our experience of devaluation when we start with the label first. When we start with our interests we’re then thinking about contribution and valued roles. 

Genia:            Right. Right. Yeah. Yeah. It’s sort of interesting in the world that we live in, in over the last, many decades now, people often are connecting around a common form of devaluation. And that is quite, that can be very, very powerful even life defining, you know. You can think of certain activists, for example, and international heroes that have come together around activism around a particular form of devaluation. But even in those situations, if you look at those, the person’s whole life, the people that they are, it’s still not one thing. 

Selena:           It’s still not one thing and what it also isn’t … Anyone who is in an activist role based on devaluation or a movement, they have allies that are seen in valued ways. There has never been, well, and we might correct me if I’m wrong, but as far as I know, and many of the great movements that have happened in the past while, they’ve always been in collaboration with allies that are seen by the rest of society as valued. 

Genia:            Right. Right. Yeah. It may not be the most common narrative about the historical reality, but it is a reality. 

Selena:           Absolutely. Absolutely. 

Genia:            Interesting. Very good point. Okay. So, let’s move on to principle three. 

Selena:           So, principle three is that supports and plans are best arranged around individualized options. So, we just fundamentally feel and know and act upon that planning and support happens uniquely, one person at a time. And we think that the best approaches, the best contributions, valued social roles, come about when we are thinking about the one person and what makes them, you know, what’s going to help to make them thrive and be seen and known and belong in community. And we just are unable to do that when we’re thinking about planning for a number of people. And when we’re planning for a number of people, it’s the number of people that are seen and relationship and we’ll get down to that principle, but just that they don’t happen, they don’t happen. And we also make many, many concessions if we’re thinking about planning for many, many people. 

Genia:            Right. 

Selena:           So, yeah. 

Genia:            Right. 

Selena:           So, when families come here, they can expect that we’re doing things, you know, one person at a time in the context of their family. 

Genia:            Right. And so, I feel like we could go, we could have an entire conversation just about this particular thing. But, one of the things, I’m trying to remember who recently said this, I was at an educational event and somebody recently said this, and I cannot remember who it was, but what they said is, there is no such thing as the needs of a group. There is no such thing as the needs of the group. It is possible, maybe this was at the last SRV I presented at, I don’t remember. But anyway, there is no such thing as the needs of the group. There may be each person, individually in that group, may have the same need. So, it may be represented in each individual, but the group itself doesn’t have a need. So, if you’re looking at, if you are talking about the needs of a group of people, there’s something fundamentally already skewed about that. 

Selena:           Absolutely. 

Genia:            About that conversation. And the reality is going to be that even if there is a single thing that is a need for every individual person within a group, not all of their important needs will be shared by every individual in that group. So, there’s at some point you’re going to deviate and meeting the needs of one person in the group is going to undermine meeting the needs of another person in the group. 

Selena:           Yes. Yeah. And so, in this principle, we are meaning that, you know, one person at a time does not mean the separate from the rest of community. But it does mean that we’re not thinking about grouping people based on disability. 

Genia:            Right. So, does that mean, Selena then, that the organization feels that it’s wrong for two people with a disability to be friends? 

Selena:           Absolutely not. We recognize that people need a variety of relationships in their life. And, friendships happen in natural and organic ways. We’re just saying that basically we do need diverse relationships. So that’s not our message at all. And I’m actually glad that you brought that up, Genia, because I find that often when Social Role Valorization or sort of inclusive movements are referred to, people tend to sometimes misunderstand that we’re saying that no, there can never be a relationship between two people with disabilities. That’s just not what it’s about. We’re thinking, we’re just thinking about what are all the possible ways that people can be seen and known and valued in community. And there’s lots of opportunities for people with disabilities to get together. And what we’re saying is that happens, that tends to happen. So how do we carve out thoughtfully and consciously other opportunities? 

Genia:            Okay, great. Excellent. All right. Number four. 

Selena:           Number four. Typical and diverse settings and familiar community places will provide natural safeguards and other community members will be role models, teachers, potential friends. And this goes back to sort of that diverse relationships. And just thinking again, where are the typical places in community that people can be known? And when we’re talking about safeguards, we are talking about just, you know, other people looking out for one another. So, noticing when someone is not there, that’s a safe guard. If I may, I’d like to use an example. I knew someone in high school and because we were just together in high school with other people, something happened to a young woman who happened to have Down Syndrome and she was being taken advantage of by another person. And, the thing that happened was because we, others knew her and could speak about it, we were able to bring attention to what was happening at the time, to teachers and to her parents. So, if she were on her own or isolated or just in the class with people with disabilities, those safeguards from the other students just wouldn’t have been there. There wouldn’t have been that other voice. There wouldn’t have been others who may have spoken up and believed. So, that’s just, you know, one of the natural safeguards that just regular, typical community offers. 

Genia:            So, I think that this is one of the most provocative principles because I think that it is very common for people to believe that people with disabilities are very unsafe in general society because people are mean and people stare and they tease and people get bullied and abused. And that’s true, right? Like those things happen to people for sure. So, how this principle really goes in, really stands in contradiction to the idea that people with disabilities need to be in service with people who want to be around them, who choose that, you know, that line of work and can keep them safe. 

Selena:           So, I don’t know if this speaks to it or not, but I just think that never has it been shown that, you know, services protect people. It is people who protect people and it’s a variety of people who protect people and never has it been shown that it is a paid person in service that is going to be fundamental to people to provide safeguards to a person and them having their fullest life. 

Genia:            And you know, not in any way implying that there are not wonderful people working in services because we both know that the, you know, people working, the vast majority of people working in services are very well-intentioned, very big-hearted people who care a lot. That’s not, you know, that’s not an issue for debate. But you’re saying never has it been shown that services keep people safe. But in fact, what has been shown is that people living lives steeped in service away from the general community are not safe. And we’ve seen that over and over again throughout history. But also, there has been research on that question particularly. 

Selena:           Absolutely. And I’m glad that Genia, you bring up the point that there’s not, you know, there are good people, of course working in service. And that it’s not about those people, It’s about just service structure period. And, it just, yeah. 

Genia:            Right. 

Selena:           It’s not the safeguards that most families are looking for their loved ones. 

Genia:            Right. Yeah. And, you know, I think as well, it’s true that there are very wonderful people working in services, but there are also very wonderful people in our community. Like it’s the same people. 

Selena:           Yeah. 

Genia:            And, also that the people who are mean or insensitive or downright dangerous that are in community, those people are in service as well. 

Selena:           Absolutely. 

Genia:            You know, like the full breadth of human really is present in both spaces. So, one of the things that I think is fundamentally different though is exactly what you said about the service structure. Because while you’re going to have good people and bad people working in services and you’re going to have good people and bad people in the community in general, direct services are usually not a means to an end, they are the end. Like they are the point.

Selena:           Yeah. Right. Yeah. 

Genia:            Whereas general community is, you know, just in much more diverse, with much more opportunity and …

Selena:           … much more opportunity …

Genia:            … the world exists in the world. 

Selena:           Right, Exactly. 

Genia:            Services are just services. 

Selena:           And, by thinking community, what you find is a responsibility of the heart. A responsibility of … my responsibility to my community, to watch out for my neighbors, from my friends, from my loved one, just because who they are and who I am, because I have to as a part of community. So, I think that’s also one of the key differences is that it’s …

Genia:            It’s voluntary. 

Selena:           Yeah. It’s voluntary. 

Genia:            Yeah. And it’s also like I think about just my little, I live on a little cul-de-sac street. It’s a very small street. And I know some of my neighbors quite well and others I don’t know very well. I know we’ll talk more about relationships, but we identify the people that we know, we have sort of identified where our commonalities are in that sort of builds and strengthens our relationships. And I definitely notice when I haven’t seen one of the neighbors, most of the people on my street are elderly, when I don’t see one of my neighbors that I know really well, I notice that, the person that I know and that I’ve made a connection with. I don’t necessarily notice the person who I’m not so connected with. So again, that sort of establishing of commonalities and points of interest starting from that, those interests really is quite powerful as far as keeping people safe is concerned. 

Selena:           Yeah. And, Genia, and really just making sure, let’s say we’re talking about young children, that we are outside, that we are being seen in our community, that we do have something to contribute to our neighbourhood and that we’re setting that example for our children. 

Genia:            Absolutely. Yeah. And part of the principle, part of what you read was about people in community creating opportunities for like mentorship and role models and teachers. And of course, because there is such a, community is huge, you know, the opportunity for the number of different kinds of mentors and role models and teachers is so much greater than if you exist only within services and that would keep you safer as well. 

Selena:           Absolutely. The community is abundant and just, you know, being a parent, I know there are many people in my sons’ lives that have been able to teach some things and they’ve learned from that I have no idea about. And things beyond what they could learn in school and yeah, absolutely. Yeah. Our communities are full. 

Genia:            Yeah. And with that comes great potential and opportunity, too. 

Selena:           Yeah. And great potential and opportunity in a lifelong way. 

Genia:            Right. 

Selena:           It never, it never ends … 

Genia:            Right. 

Selena:           … in community. 

Genia:            All right, so we’re going to pause right there. During my conversation with Selena, I was really interested and reflective about the importance of principles and values in both guiding our actions and also in being reflected in our behavior in ways that we might not notice. I’m curious about your experience with this. Have you ever noticed either your own actions or the actions of somebody else reflected values and principles that perhaps are not really what they state their values and principles are? I’d really love to hear from you on this. Comment at goodthingsinlife.org/024 so that we can talk about it. Now, we just covered principles one to four of Durham family resources and support. And in the next episode we’ll be covering principles five through ten. So be sure to check back in next week. Take care and have a great, great week!