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Season 1, Episode 9 — 26 May 2016
About this episode
A discussion with Alicia DeLashmutt about Our Home — Inclusive Community Collaborative, a community she founded to foster greater involvement in one another’s lives among neighbors in order to provide the sorts of supports that people with disabilities and older people need to live independently in the community.
This conversation is based on her article, “Homes, Not Housing” in the current issue of Connections.
About the presenters
Alicia DeLashmutt is the proud mother of a beautiful teenage girl whose diverse interests include basketball, Fritos and opera. Her daughter experiences Mowat-Wilson, a rare genetic syndrome whose effects are widespread and significant.
Alicia has a professional background in landscape and interior design (both commercial and residential). She was the Director of Interior Design for Sienna Architecture, and founded Grasshopper Garden Design, an independent landscape design firm.
A 2007 graduate of Oregon Partners in Policy Making, she is the founder of Our Home — Inclusive Community Collaborative, and is actively creating a mutually supportive inclusive community for diverse populations in Portland, Oregon. She is a member of the Oregon Developmental Disabilities Coalition and currently acts as an advisor to the Portland Public Schools Special Education Advisory Council and to the OHSU LEND and Oregon Pediatric Improvement programs. Alicia has served as the Program Coordinator for the Northwest Down Syndrome Association Kindergarten Inclusion Cohort, and has made numerous national presentations as a strong advocate for inclusive community, education and life.
Alicia is an active advocate and parent mentor who believes that the inclusion of ALL, regardless of race, color, national origin, sexual orientation, religion, age, disability or gender identity is necessary for a vibrant and healthy community.
Donald Taylor is the Membership Manager at TASH and the producer of Amplified.
Announcer: You’re listening to TASH Amplified, a podcast that seeks to transform research and experience concerning inclusion and equity for people with disabilities into solutions people can use in their everyday lives.
Today we’re talking to Alicia DeLashmutt about co-housing and urban design and what they mean for diversity, community living for people with disabilities and how we might all better share our gifts. Alicia is a founding neighbor of Our Home — Inclusive Community Collaborative, located in Portland, Oregon. Our discussion originates with her article from the current issue of Connections, titled, “Homes, Not Housing“.
Donald Taylor: Alicia DeLashmutt, please introduce yourself for our listeners.
Alicia DeLashmutt:Absolutely. Hi. I’m Alicia DeLashmutt. I’m the founding neighbor of Our Home — Inclusive Community Collaborative.
Donald Taylor: And tell us about the Inclusive Community Collaborative.
Alicia DeLashmutt: It is a group of folks that have come together that are looking at what neighborhood and community is made up of. Are we homogenous groups of folks? Are we an inclusive, intentional group of people that rely on each other’s values and gifts? Or are we wanting to bring together people based on deficits and needs in a more segregated community. So it’s a group of people that has chosen the values of a diverse, inclusive community.
Donald Taylor: So, I understand that one part of your vision for Inclusive Community Collaborative is that it’s a co-housing community (Wikipedia article | Cohousing Association of the United States). Would you tell us about the co-housing movement and how you’re adapting this model to community living for people with disabilities.
Alicia DeLashmutt: I mean, we are definitely taking the co-housing model and moving it into its next phase. And co-housing — I believe that there are 150 in the United States right now and there is over 100 that are on the boards, being designed as we speak, and in the next 10 to 20 years that is going to be blossoming into a much larger number as well. We’ve seen senior co-housing, we’ve seen artist co-housing, we’ve seen, you know — I think a lot of it started out being folks that come together around a vision of sustainability and more interdependence-independence — so you are a self-contained neighborhood where all of your needs are are supplied in the neighborhood. So they take care of their own maintenance and cooking and child care and gardening needs.
This is — we’re looking at it as a — we term at a co-housing light model where we don’t have quite as many committees but we are still there to have each other’s backs and it’s based on this value statement that we all have value that we bring to the table and it’s a matter of mining for that value and then sharing it freely amongst your neighbors.
Donald Taylor: You’ve got a broad array of initiatives concerning community living, people with disabilities, and bringing together diverse communities in a larger sense. Inclusive Community Collaborative is part of a coalition of other organizations that you also work with. And you have spoken at the TASH conference on a range of topics such as diversity, inclusive education and personal stories. Would you tell us about how you see all your different initiatives working together.
Alicia DeLashmutt: The first time I spoke at a TASH conference was with the Kindergarten Inclusion Cohort which is with Northwest Down Syndrome Association and they’re All Born (In), kind of, umbrella piece. And we’ve formed — I think it was eight years ago — a series of educational opportunities for parents to come together and learn about advocacy, the law, how to build consensus in schools, how to work as a team member, how to dream big for your kids, the importance of an inclusive placement in kindergarten. It’s all focused around four-year-olds going into kindergarten and gaining inclusive placements, so that their education is with non-disabled peers as peer models and friends and forming communities from the very beginning in childhood.
And that’s something that has really, sort of, been the stepping-off point for me into into this world of disability is, do we want to have children that are segregated and educated in rooms that are down the hall, around the corner, and behind a closed door, or do we feel that our individuals are part of the community at large and bring as many gifts to the community as they take services and supports from the community. That educational piece is something that I’ve been working on for — you know, well my daughter’s in ninth grade this year — so for the last probably 11 years, since she started in early education.
It dawned on me about three years ago that my daughter will not always be in school — that school eventually ends. And when you leave the school system, you move into a community that is not a special education community; it’s not a segregated community. There are no special needs grocery stores, or doctor’s offices, or parks and national parks systems. It’s a community at large, and what does that community look like for our individuals. And as I was looking at that future, I realized that we had been developing an inclusive educational opportunity — or striving for that and building on that — and we were, instead of coming into an inclusive housing community, we were coming into a more segregated community with less options than what I was looking for. And talking with lots of other families that are in this same situation, we looked at each other and said, why would I have fought so hard for so long for my child and built community around her for us now to go into a segregated community for the rest of her life?
So those are the pieces that I’ve been working on in the past, was more the education. I also have been — I’ve also spoken at TASH about the importance of story, and the anecdotal information, and the value of experience of families in building policy, and setting the direction for our communities — the sharing of what your story is, and where you come from, and how that builds connection and understanding between people.
Donald Taylor: In your article from this quarter’s issue of Connections you write that inclusion has made great strides in many areas such as education, but that community living is a place where it lags. Would you tell us more about that, and do you have any thoughts on why that’s the case?
Alicia DeLashmutt: In education we passed IDEA [the Individuals with Disabilities Education Act] 30 years ago that talks about — the intent of that is to educate people who experience disability in the least restrictive environment with non-disabled peers, under the general education curriculum to the extent possible. There’s challenges still to that, in that interpretation and how different schools, in different districts, in different classrooms do that. But I believe that families have pulled around behind that, and from a grassroots effort and a bottom-up effort helped create those learning opportunities for their children — or at least have helped advocate and push that agenda further. So we’ve had more inclusive educational opportunities — though it is still definitely a struggle and we risk backsliding if we’re not careful.
I think that that generation of parents, and that generation of children who have grown up in the general education environment, are now reaching adulthood. And this is the first time that our families have been seen on the scene of housing. And being parents that have been raising children, we haven’t been changing the housing world yet because we just haven’t even been there. So, you know, where we’re reaching out now and saying the options that we’re seeing coming out of education still look very similar to what they looked like at the beginning of the closing of the institutions — which I understand we still have many states that have institutions, so not all of the states have closed their institutions for people who experience disability. You close the institutions, you develop community living options, self-directed living options: and what do those look like? At this point we don’t have fully integrated communities where we have the choice of having a fully-realized life in a home of your choice with the supports that you need both from system-supports and from community-supports. That’s still a still a challenge for us.
Donald Taylor: So, would you tell us about what is happening with community living in Portland and how you see Inclusive Community Collaborative working with efforts by other like-minded organizations?
Alicia DeLashmutt: Yeah, I’d love to. So when the Inclusive Community Collaborative was formed, we talked to other agencies in Portland about: would you be interested in developing a project along these lines? Is this something that you see a need for here in Portland? We believe that it’s a need that’s here in Portland and in other areas, but we need that first community built. I talked to my local CDCs [Community Development Corporations], some of the other agencies that do low-income housing, housing for seniors, to see if they would pull together a more inclusive, collaborative approach to housing in homes, and discovered Community Vision, who I have known their agency for a few years through some of the work that they’ve done here in Portland. They’ve done great, creative things around home ownership, supporting individuals in their home, very individualized supports, and working from a person-centered plan approach — first on, again, the person’s dreams and how they want to live their life, and then making those dreams happen. They’re are a very creative group that isn’t stuck on what the system provides. They look at what does the individual want and need, and how are we going to make that happen with the existing resources that are here. And then if the existing resources aren’t applicable or enough, how do we make sure that we pull together other creative ways to fund that. So the values, the mission of both Inclusive Community Collaborative and Community Vision aligned so well, we decided that we could partner together on this first project.
Donald Taylor: And what is the status of the community that you’re trying to build, and what is your, sort of, most grand vision?
Alicia DeLashmutt: Well, we are just trying to build it: we are building it. So that’s at the most exciting piece right now. We have purchased a half-an-acre of land in a neighborhood called St. Johns here in Portland. It’s in north Portland and we have hired an architect and a contractor. We’re working on the design as we speak. We should be breaking ground for construction in spring of 2017 and completing the project either the end of 2017, beginning of 2018. Once the community is designed, once we know what the layout is going to be and all of the unit mix, and type, and size, we are gathering neighbors together now and will be doing some, sort of, reservation / sales and bringing that community together to develop our own value statement and how we want to live together moving in the future. So it’s not just a matter of building a project — it’s not just a matter of designing and building a project, selling it, and walking away: it’s a project that will continue to be nurtured as a community moving forward, because the success is that just supplying housing: the success is building community around our individuals that are typically seen at risk, as well as the general population.
Donald Taylor: So, a lot of the policy and thought on community living originates in issues of acquired disabilities of aging people. But they are often treated separately from people with lifelong disabilities. One of the things I think that’s interesting about your project is you’re working to bring people with lifelong disabilities together with people with late-in-life disabilities. Would you tell us about your thinking there?
Alicia DeLashmutt: Well, one in five of us will experience disability at some point in our life. So, you know, we are all to a certain degree temporarily abled, at the moment, at any moment. And that can ebb and flow in our life depending on our circumstances. Disability or not, we still have things that we give. And part of giving is also allowing other people to give to us. The opportunity for them to give is a gift to them. So there’s this wonderful give-and-take opportunity for those that have and those that need and then the reciprocal value of that. And that’s something, I think, that a lot of our — a lot of individuals that experience disability aren’t often given the opportunity to give back. And you can give back in the sense that you are, you know, providing company, and resources, and your own strengths back into that community. So it’s allowing everybody to give what they have.
And I’ve talked about, you know: I make a pot of soup; I have some extra so I give it to my neighbor. My daughter loves basketball — my daughter loves the Blazers. If there’s a basketball game on and somebody’s watching it, if they call up Neva and say, hey, come over and watch the game, they’re giving back to her in that sense. We talk about Grandma Jane: if Grandma Jane doesn’t show up on our front porch at five o’clock with a gin-and-tonic, we know something’s going on with Grandma Jane. And so somebody comes in to check on Grandma Jane. So it’s that opportunity for everyone to look out after each other as the first line of defense in this big world: we will have our neighbors to know know us and care about us instead of just be paid to care for us.
Donald Taylor: This is kind of interesting, in that we’ve talked in this podcast with some other people [e.g. Lyle Romer in “Reflections on 40 Years of Agency Community Supports“] about incubating new supported living organizations, especially on this sort of small scale person-centered way that you’re talking about. What sort of things are you doing to encourage other people to adopt this model and help other like-minded people start up similar communities?
Alicia DeLashmutt: There’s a growing co-housing community in Portland and we are talking with the members of that co-housing community about being thoughtful and intentional around including people with disabilities and a diverse group of folks together. So we’re outreaching to the co-housing community, we’re outreaching to the affordable housing community — talking about how do we use subsidies and supports creatively. There’s often been a push to fund the numbers: you know, if you build a housing development for 30 people that are below median income the you’ve just housed 30 people, but you haven’t really created that sense of belonging that we need. You’ve provided a shelter. When you look at Maslow’s hierarchy of needs, you’ve provided shelter, but you haven’t provided community. And so this is providing that next level up, so that you can move into the world and achieve, you know, and live to the fullest potential that you have.
Donald Taylor: That’s a really tall order. I mean, so many people today don’t even know their neighbors. And, sort of, I think there’s a real desire to live these, really sort of, anonymous, unconnected lives. How do you facilitate a more community-oriented sense in people?
Alicia DeLashmutt: Well I think that we have evolved that way in the pretty recent history that we are looking for that so-called independent, anonymous life. But I think we’ve looked around and thought, you know, we’re now hiring childcare; we’re in deep trouble if one of our family members gets ill. We’re finding that this this idea of anonymous independence has its costs as well. And I think that there is a number of folks that are rethinking that approach. And that is I think where part of the co-housing community is starting.
And even in some of our building codes in Portland, we discourage strongly building what they called snout houses, where you have your garage out in front; you could pull in off the street into your garage, close the door behind you, and go into your kitchen, drop the shades, and be completely, you know, anonymous from the community. We’re going more along the lines of front porches and interface with the community. The designed environment, the built environment, is one place that we can start and help support this.
The way that we’re designing our home is, we have front porches that face into a central courtyard. We have kitchens and dining spaces that face into the central courtyard, so during your more social time, when you’re up and about, you know, making food and sharing food, you’re more interactive with the neighbors in the neighborhood and more visible during that. We have a common house where there will be a gathering space. We’ll share meals together there, have music events. We want to invite the neighborhood associations into our neighborhood so that we’re not just an insular community of our own, but we’re actually inviting the next layer of neighborhood into our community to share with us, and us with them. So it’s how you how you design that built environment.
It’s also, then, how you how you design the interactions that neighbors have. David Wetherow is a great example — his star raft approach of: we all have something to share and if we if we tether our boats together — I think the example he gave was: I may have the blender, you may have the limes, and Sally over there on the next boat has the tequila; and together we have, you know, we have a margarita party. And somebody else has the music. We pull our boats together, the kids swim in the center, we look out after each other and that helps form the community — in the in the way of sharing as well.
So there’s intentional inconveniences that are built in. We’re going to bump into each other at the mail area, at the garbage area, again at the community house, passing through each other’s courtyards, and seeing each other on a daily basis. That builds community without you even trying. You just strike up conversations because you’re in proximity, and you’re not isolated from your neighbor in the, you know, pull into your garage, close the door, close the blinds and you’ve gone away.
We are still providing in the architectural layout the opportunity for privacy, because we aren’t all, you know, A-type personalities. We all need our time just with our families, or with our own, to regain our energies and come back out. But, you know, those opportunities of both private, semi-private, and public spaces — all built into a thoughtfully designed community, and then a thoughtfully supportive community moving forward, we think are are how this approach will be successful.
Donald Taylor: This is a considerable accomplishment on your part. I think a lot of people listening might say, building an entire community is something I could never do. How would somebody get started if they wanted to do something like this in their own community?
Alicia DeLashmutt: I think dreaming the big dreams and having a North Star of how you want, and how your individual wants to live a life and — we did that in schools. I mean, that’s how we accomplish inclusive education. That’s how, you know, our kids are in our churches, and everybody’s out at the restaurants together, and we’re in community together already — reaching out for those connections that already exist. So who is your local CDC? Who are your organizations that support families? Having the conversations around: this is what I want for my family and my child and, as an individual, this is what I want for my future — having those conversations boldly and unfettered.
My daughter and I consider ourselves out and proud in disability world, and in the world in general. And being a part of your community is such a huge piece, just from the very beginning. That’s your advocacy work — sometimes is just being front-and-center in every room that your feet take you into.
That and, you know, again, looking into the resources that are available to you. Talking with organizations on what they do. Would this be of interest to them? Pulling in like-minded families with you so, you know, you’re not the only crazy person in the room: you have other folks that are there pulling for you, and with you, and validating this idea of a full and fully realized life. And reaching out to organizations like ours to be in your community. And, you know, talk with the folks that could be the decision makers in the policy influencers in your communities as well.
It’s how you accomplish anything. You look to the individuals that are doing similar work, and dream big dreams, and don’t stop: it’s just going to happen.
Donald Taylor: A lot of the thinking about this sort of model of providing supports to people originated in the 60s and 70s. And there’s a lot of concern among TASH members about the graying of people with really big visions and strong commitments to values-based advocacy, and it’s been really great to hear someone — to hear a young person of another generation picking up that torch and carrying it. Thank you for talking with us today.
Alicia DeLashmutt: You are very welcome. Thank you.
Announcer: You have been listening to TASH Amplified. For more about the series, including show notes, links to articles discussed, a complete transcript and a schedule of episodes updated as they become available, visit tash.org/amplified. You can subscribe through iTunes or your favorite Android podcast app to have the series delivered automatically to your device so you never miss an episode. If you enjoyed today’s episode, please share it with your friends and on your social networks.
Today we spoke with Alicia DeLashmutt, a contributor to our membership magazine, Connections. You can learn more about her inclusive community project, Our Home, by visiting www.inclusivecommunitycollaborative.org. You can read her article from the current issue of Connections for free on the show notes page for this episode. To receive Connections six times a year, as well as access to fifteen years of back issues, you can become a member of TASH at tash.org/join.
TASH is a values and research-based advocacy association located in Washington, D.C., with local chapters coving 18 states. In 2015 we celebrated our 40th anniversary. We offer organization, advocacy, collaboration, scholarship and education for people with disabilities, researchers, educators, service providers and family members. In addition to this podcast series, we offer a scholarly quarterly, Research and Practice for Persons with Severe Disabilities, a popular magazine, Connections, a series of conferences. You can learn more about TASH at tash.org. You can receive updates from TASH on this podcast and our other activities by following us on Facebook or on twitter at @TASHtweet.
This has been a sample of the colleagues and conversations available through TASH. It is only because of the excellent work that our members do that we can bring you this information. For more resources such as this and to become a member, visit tash.org/join.
We’ll hear from another outstanding advocate again in two weeks.
This interview was originally recorded on 6 May 2016.
This transcript has been lightly edited for clarity.
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