Finding the Edge, with John O’Brien

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Social progress widens over time. Attitudes, laws, and institutions that were acceptable, or even ideal, ten or twenty years ago might be the attitudes, laws, and institutions that we’re trying to revolutionize today. 

The Centre for Welfare Reform’s John O’Brien thinks of this as the “edge.” As an advisor for people with disabilities and their loved ones and community allies, John wants to find the edge of what is possible for all people in their communities; what seems like just a dream today could be an achievable goal tomorrow. 

John sees fully inclusive communities as having five dimensions: they promote interdependency; they open valued social roles to all people; they practice hospitality across a wide range of human difference; they know how to give and develop one another’s gifts; and they’re effective at resolving conflicts around disadvantaged members of the community who’ve been previously socially excluded.

 John advises peoples with disabilities and their families, advocacy groups, service providers, and governments. He writes and runs workshops to spread the news among people interested in change. He works in partnership with Connie Lyle O’Brien and a group of friends from 19 countries, and is a Fellow of the Centre for Welfare Reform (UK). He’s also affiliated with inControl Partnerships (UK) and the Marsha Forest Centre (Canada). He was a member of Center on Human Policy, Law & Disability, Syracuse University (US) for 35 years.

I’ve been wanting to host John on the podcast for a long time and I’m thrilled he was finally able to join me for not just one episode but two! Check out last week’s episode if you missed it for my first talk with John, then tune in here for the conclusion. The current edge is a space of control, and we need to figure out how to give people with disabilities more control over their lives to move past this edge into a better future.  

Nick Burt-Miller (4s):

Welcome to the Good Things in Life Podcast, committed to bringing world-class ideas, conversations, voices, and thought leaders to parents and educators. So kids with intellectual disabilities will have the support they need to build positive inclusive lives at the heart of community. Here’s your host, sister, mom, researcher, writer, speaker, and perpetually curious Genia Stephen.

Genia Stephen (38s):

Hello everybody. And thank you for joining me today. I’m so excited because today’s guest on the podcast is John O’Brien. Now not to age myself or John, but John and I have met, although I’m sure he wouldn’t remember because it was decades ago and I was a kid, maybe a teenager and had the great pleasure of attending workshops and presentations done by John, as I said, years and years ago. And this is the first time that John and I have connected, I think since then, but I’ve continued to read John’s work and follow John’s work and I am a huge fan. So John, thank you so much for being on the podcast.

Genia Stephen (1m 21s):

I’m really grateful.

John O Brien (1m 24s):

I’m really happy to be talking with you this morning.

Genia Stephen (1m 28s):

So many of the listeners will know who you are, John, but for those who don’t, I wonder if you wouldn’t mind or if you would please introduce yourself and tell us a little bit about yourself.

John O Brien (1m 45s):

Well, I started to connect with the world of people with intellectual and developmental disabilities in late 1967. So that was a while ago. And I came into the field naively. I was a conscientious objector to the war in Vietnam and for my alternate service, I was assigned to work in a big institution with people who were considered violent.

John O Brien (2m 29s):

And that was a very strange world for me. And in those days there was massive overcrowding and understaffing, and at just about that time, our field kind of blew open. And so I had the opportunity to be part of the, to make institutions unnecessary and because the field was expanding and I had the opportunity to get involved in all kinds of different ways to support people.

John O Brien (3m 17s):

I lived with my family for three and a half, four years. One of the first group homes for people with suppose the difficulties in self-regulation, we’d call it today. We used to call it behavior problems and got involved that way. I was involved in developing a community-based service system in Georgia through the seventies and

in 1978 administrate political administrations changed and institutional arrangements became more popular.


John O Brien (4m 16s):

And a number of us who were identified with making the institutions are necessary.

John O Brien (4m 21s):

We’re out of work. And I was, had the opportunity to start to travel around people with disabilities in their families and their allies among service providers, and to try to share what people are learning. And that’s what I’ve been doing for the time since 1978. And sometimes I write about it. Sometimes I talk about it, but mostly I’ve been a remarkably privileged spectator and have had the opportunity to encourage and support people to reflect and think about what they’re learning.


Genia Stephen (5m 15s):

And a lot of what you have written and spoken about has really been about community capacity. Is that a fair statement?


John O Brien (5m 29s):

It’s surely the context for the context that I think is most relevant to the work and the starting place for me.

Genia Stephen (5m 45s):

And can you, can you elaborate a little bit more about that context in that starting place? What you believe about community?


John O Brien (5m 58s):

Well, there are a couple things that are confirmed for me through these 50 years or so. One of them is that progress depends being in touch with the desire for more life that people with intellectual and developmental disabilities have, and that their families, when their families pick that up and amplify it in action.


John O Brien (6m 49s):

So that’s one thing. Second thing I’m sure of is that the desire for more is nowhere near exhausted and that whenever we make predictions about what’s possible for people with intellectual and developmental disabilities, whenever we make those kinds of predictions, we underestimate what’s possible for people. And the third thing is that the powers of social exclusion are mighty ingenious, relentless, and protium.Protium just means they changed to fit our changes, right?


John O’Brien (8m 0s):

We, we start to do something that seems good and no sooner do we start to do social exclusion comes back up. And so those three things are kind of foundational and all three of those things seem to me to not be confined to disability, although we’ve tended to see disability in a context of separateness.


John O’Brien (8m 45s):

And so it seems to me to make, to start by saying, what is, what kind of community makes a good life possible? So your podcast title, right? The good things like what. What do our communities need to do to create the conditions in which action is happening? And one of the biggest challenges that people with intellectual developmental disabilities have that we as a field have struggled with since the 19 late 1940s, early 1950s, maybe when we begin to see the family movement, the parent movement take off is what kind of community do we have to be in order for there to be good things in life, right?


John O’Brien (9m 55s):

And those struggles are beginning to come clearer in the last few years, as in Canada issues about truth and reconciliation begin to bring the question of social exclusion and indigenous people into clarity and which in the  US we begin to see increasing struggles around who belongs and what does it mean to belong?


John O’Brien (10m 40s):

So in a sense, we’ve kind of lived previews of issues that are becoming more and more clear for all of us. And one of the biggest axes of that learning that we need to do as communities has to do with figuring out how to be a, we, how to be a bigger we as opposed to being a collection of us and them.


John O’Brien (11m 24s):

Yeah, because people with intellectual and developmental disabilities history shows are almost always profoundly disadvantaged by any situation where we organize things around us, in them. So there are some challenges that people with developmental disabilities can (inaudible) to community life to make things better for everybody. And those challenges include promoting interdependency in a culture and a culture that’s much more extreme on my side of the border than yours, but in a culture that tends to hold up the myth of self-sufficient individualism, right?


Genia Stephen (12m 26s):



John O’Brien (12m 26s):

As the ideal and turns all values into material values. So how do you promote social capital? If you can stand that word, that phrase? How do you promote trust among people in a situation where trust is falling?

The notion of can you trust other people is tapering down and down and down and down and down over the next, over the last 10, 15 years.


John O’Brien (13m 7s):

So the challenges out of we create a bigger weed by promoting interdependency. How do we figure out how to live inclusive stories as opposed to just daydreaming, right? How do we, how do we open valued social roles to people who require accommodation to people who require adjustments? In fact, people who require assistance in order to play those roles, how do we decide how much of our common wealth we’re going to invest in supporting the participation, supporting valued social roles for people with disabilities.

John O’Brien (13m 51s):

So how do we create a bigger, we, by living inclusive stories? How do we become more hospitable to people who come to us as strangers, people who come to us as different? How do we learn to practice hospitality as a way to create a bigger way? And as people find their voice, we need to ask ourselves how we actually build capacity. How do under what conditions can people identify and strengthen their gifts?


John O’Brien (14m 39s):

And as all those things are happening, as more and more people find their voice, we need to learn new ways to resolve conflicts. Things, keep coming up. We discover a mass grave at a residential school or looking at events and Tulsa today, as we’re speaking a hundred years ago, the hundredth anniversary of the destruction of a prosperous African-American community and people are raising the issue of reparations, right?


John O’Brien (15m 27s):

How do we pay people back for WhatsApp? How do we settle land claims? And how do we settle the claim with people with intellectual and developmental disabilities, to the kinds of supports that are outlined and underwritten in the convention, the UN convention on the right. So persons with disabilities, what does that give us? What does that give us the right to, but what can we claim as a result of that?


John O’Brien (16m 9s):

Right? Article 27 says we should be able to claim the support to work in an increase in inclusive economy. W what does that mean? So those are sort of five tasks that I think as communities we need to attend to. And I think that people with disabilities and their allies who are at the front edge because of the desire for more of the good things of life, and a willingness to act. To test that desire, have something important to contribute.


John O’Brien (16m 57s):

And from my point of view, have a responsibility to contribute no responsibility in the sense of, we must do this, but responsibility in the sense that if we want a better community, we need to engage it along those five dimensions.


Genia Stephen (17m 22s):

John, just for clarity for me, I was furiously writing. And then realizing that I was losing track of listening to you in order to furiously write, can you list the five dimensions again for people?


John O’Brien (17m 48s):

Sure. We need to work to promote independency. We need to live inclusive stories by opening, valued social roles to people. We need to learn to practice hospitality across a much wider range of human difference. We need to learn how to give, create the conditions in which people can identify and develop their gifts. And we need to resolve conflicts that arise as people who’ve been disadvantaged and socially excluded, systemically find their boards.


Genia Stephen (18m 42s):

So how do we do those things?


John O’Brien (18m 47s):

Well haltingly and with great difficulty and only for a minority. So far in the first, I mean, it’s important to remember. We haven’t been at this very long, right? Until the mid to late 1960s, there was very little public investment in anything that wasn’t institutional until maybe a little sooner in the US than Canada.

John O’Brien (19m 38s):

I’m not sure about this at all, but it’s probably the fifties before associations begin to form and generate alternatives to institutionalization. So we haven’t been at this for a long. We haven’t been at this my lifetime 75 years, I think, well, that’s not very long mean in history. And we have a much longer history of social exclusion being taken as the way it is.


John O’Brien (20m 22s):

We didn’t start to assert people’s rights in court until 1969, 1970. And that history has been rocky and confused. So the first thing from my point of view is we haven’t been at it long, and we’ve had lots of errors to learn from not errors in the sense of silly blunders. But it made perfect sense to me, as we were trying to develop an alternative to institutions in the seventies, early seventies made perfect sense to me to set up day programs all across the state of Georgia and we to play on those, to play on that system.

John O’Brien (21m 33s):

We enlisted Wolf Wolfensberger and Gunnar Dubois had a how on roar and a whole bunch of people who were the leaders of the field to advise us. And they said, what you want is a continuum of day and residential services. That was 60 years ago. That wasn’t very long. That that was the, that was the best idea we had and we learned the limits. And so we keep learning and struggling forward. So the most important message that I have about it is that we either keep learning or we give up. Right. And retreat into some kind of

self-righteous fantasy that it shouldn’t be like this.


Genia Stephen (22m 31s):

Do you mean you mean it shouldn’t be like this? Meaning it shouldn’t be hard or,

John O’Brien (22m 39s):

Well, it’s not right. It isn’t right. It’s, it’s not right. That nurses who’ve had to give up their who’ve had to give up their nursing licenses in British Columbia are still responsible for the lives of people that are served by the agency that they work for. That’s not right. On the other hand, there are competing equities, right?

John O’Brien (23m 14s):

There’s the world is more complicated than that. And so there’s a kind of, it’s not right that the school system should be excluding a young man that I’ve just been talking with people about on the basis of a very poor understanding of what gets labeled as his autism. Right. And not right. But they’re doing that. There’s a law that says they’re not supposed to be doing what we keep discovering as they read the law differently. So we can either run away from our, or not run away, but retreat, you know, and say, let’s, let’s circle the wagons as a number of families in this country, or do it now with trying to create little gated communities or apartment buildings at the edge of a college campus or, or whatever that, that congregate people together.


John O’Brien (24m 27s):

That’s an understandable response to me. It’s not what I would desire. I’d like to do whatever I could, as I

think you’re doing with your, with your podcasts and your other efforts to encourage people another way. But there we are. So we have to keep learning. And right now, the way to learn from my point of view is to go to the edge, right. Is to find the edges and raise the question. What more is possible here?


Genia Stephen (25m 7s):

What are the edges?


John O’Brien (25m 11s):

 Well, the edge is the place where there’s the greatest uncertainty, right? And where there’s an opportunity for something good to happen. An example would be some years ago, 30 almost, I think maybe a little more.


John O’Brien (25m 49s):

My friends in Alberta among the parents of young people who were coming up to school graduation found an edge, right? And said, why should my unlabeled daughter be able to go to the University of Alberta where my labeled son can’t can’t even imagine it can’t even see the possibility.


John O’Brien (26m 30s):

That’s a desire for more. That’s what I meant by a desire for more. And at least as I tell the story, my friend, Bruce, you did ski who had some connections and others got organized and created what then was called on campus. That was an edge. How it was going to work, especially because some of the early participants were people who required pretty substantial accommodation and pretty skillful assistance.


John O’Brien (27m 13s):

Not, but that’s another place at the edge, right? There’s, there’s so many people who are so competent who are excluded that sometimes we forget that people with more substantial needs for accommodation and assistance want more too. And so that’s an example. It’s also an example, interestingly enough, as this begins to play out over 30 years of something that those kind of protean forces of exclusion begin to undermine from my point of view, right?


John O’Brien (28m 4s):

So now we have plenty of people go into campuses. But in some instances in kind of odd versions of extensions of special ed, but, but, but on the campus of a university or a technical college or a community college or whatever college, and all kinds of ways that special-ness creeps into it.


John O’Brien (28m 44s):

Whereas our friends in Alberta have continued to work really hard to learn how to stick with the idea that as the strategic plan for inclusion. Canada says, inclusion means people are in the same place as everybody else doing the same thing as everybody else. Yeah. Yeah. That’s hard as hell to do. You just need to ask the people who are doing it.


John O’Brien (29m 25s):

So there’s because I have five fingers, lots of things happen in five. So we always have to watch out because unless we’re intentional. Social exclusion is going to result in segregation and that segregation can become remarkably subtle. Right.


Genia Stephen (29m 52s):

Can you give me an example of that?


John O’Brien (29m 54):

Sure. Here’s a person attending a post-secondary program who has no real identity on the campus other than as a participant, as a, as an intellectually disabled participant in a special program there go into the student union.


John O’Brien (30m 25s):

They’re meeting people, they’re hanging out at the gym, but when you ask to learn a little bit more about their social network, about their contacts, about who they hang out with, about who they choose to be with, about who chooses to be with them, we discover that they’re in a bubble. Does that make sense?

Genia Stephen (30m 46s):

 Yeah. So they’re, they’re sort of they’re in it, but not of it.


John O’Brien (30m 53s):

Yeah. And again, it’s easy to say that in a judgmental tone, I’m not proposing what you’re doing, but it’s easy to be judgmental about that, right?


John O’Brien (31m 5s):

So of people are screwing up. They’re not doing it, right. My inclination is to say, without consciousness, without intention. Segregational reassert itself and often will dress itself up in something that looks pretty good. And it doesn’t have to be as gross as a charity sponsored prom for adults that happens from three 30, till five o’clock in the afternoon somewhere. Right. It doesn’t have to be like that. It can be as simple as forms of exclusion that continue to wrap themselves around people.


John O’Brien (32m 1s):

So segregation is one of the things that we have to keep looking for or looking at because it undermines the valued experience of belonging. Okay. There’s a variety of stereotyped roles that fall a bit short of the ideal of a valued social role, right? The sort of here’s where you’ll find the people with disabilities, you know, here’s the kind of roles that job roles that people are in.


John O’Brien (32m 46s):

And we know as our approaches to customize employment have grown and flourished in our alliance with employers has grown that the possibility, the possible roles that people can play at work or are hard to find the limits up. Yeah. But mostly we’re not trying because we have excuses about benefits and about forms of assistance that are pay rental that can be paid for and not paid for and so on.


John O’Brien (33m 29s):

So that limits the valued experience. So respect for your dignity as a citizen. Congregation is another thing that, and self congregation is a really interesting phenomenon to explore, right? People, people choose to be with other people that they see as like them and this disrupts some of our stories a bit, you know, that’s disrupts our story about, we don’t want to have people.


John O’Brien (34m 15s):

We don’t want to cluster people with their own kind, but people who have greater degrees of freedom can choose, what do we make to that? Well, one of the things we want to be sure of is that it doesn’t take away from the possibility to share the ordinary places with a great diversity of people and form a variety of relationships. But it’s not as simple as that’s bad, right? That’s something we have to be intentional about noticing and engaging. I think.


John O’Brien (35m 00s):

We’re also tremendously vulnerable people with intellectual developmental disabilities and their families tremendously vulnerable to low expectations and poor support. The amount that we know now about the differences in people’s bodies and brains and minds, the amount that we know is massive, the amount that’s actually available to many, many, many people is so impoverished.


John O’Brien (35m 39s):

So, and so we reproduce low expectations. And the expectation of external control of people with intellectual and developmental disabilities is so, so powerful, right? Because our whole history of conscious support for people with intellectual and developmental disabilities has been a history of control for their own good. And that’s really tricky.


John O’Brien (36m 22s):

There’s another dimension of the edge, right? What does cognitive impairment mean in this person’s life in the roles that they play in these concrete and specific places? What vulnerabilities does cognitive impairment generate in people’s lives, but not in big picture people’s lives, but the particular life that this person is living.


John O’Brien (37m 2s):

And that again, limits the value of the experience of choosing to value, to experience of autonomy, of having freedom. So what does it mean for people with significant impairments to be free? And we’re only just beginning to struggle with this because in the United States now guardianship legal guardianship. If facing the person, erasing the person as a person before the law is a reflex, almost everywhere in the country, it just happens.


John O’Brien (37m 45s):

Right? It’s a natural thing. It’s what has to be. And so the whole idea that’s promoted in the convention on the rights person, disabilities decision support is unknown. Almost, some people have heard about it. People in Canada have done tremendous work about this. My friend Todd recall kind of warrior of decision support among many other things.


John O’Brien (38m 30s):

Yep. So that’s where the edges are, I think, or that’s one of telling the story of where the edges are there continuing to be aware and intentional around at least those five valued experiences, right? Of belonging, of respect, that’s new valued, social roles of sharing and contributing in ordinary places, in making a contribution that has meaning to you and to other citizens and in increasing freedom and choice. And those five valued experiences and the compromises to them or the, their opponents.


John O’Brien (39m 34s):

If you like define what we might ask, paid for services to accomplish. So can you provide the assistance that you, that you’re commissioned to offer? In such a way as to amplify opportunities for belonging by promoting community participation. Can you resist narrow and stereotyped roles, right?


John O’Brien (40m 28s):

By promoting valued social roles, can you push back against, can you support the person, sorry to push back against congregation by providing assistance in a form that encourages them in sharing ordinary places? Can you assist the person and their family and their allies to push back against low expectations and poor support by creating the conditions as best you’re able with the resources you have to develop competency? Can you promote autonomy in order to push back at these forces, of external control and help people wide a zone of freedom for themselves and their families, people that they love.


Genia Stephen (41m 36s):

If you’re unsure how effective your child’s school is at offering an implementing inclusive education, you can download a free PDF. It’s called How Inclusive Is This School? 14 questions Every Parent Should Ask. You can access it at questions. That’s numeral one, four questions. And if you feel like you need to build your strong foundation in inclusive education, then keep your eyes and ears open because we’ll be opening up the foundations course. The What, why and How of inclusive Education on July 22nd.


Genia Stephen (42m 16s):

You can’t register yet, but it’s coming.


Genia Stephen (42m 29s):

So that’s a, that’s a lot as a call to, you know, when, when considering this from the perspective of a call to action, that’s a lot. And some of that, I mean, all of that, I guess, falls to us as individual humans and members of our community, just generically, like, you know, if we want to have, if we want to have our best communities, then we need to be, you know, we need to be moving towards those valued experiences and resisting the, the, the opposite.


Genia Stephen (43m 20s):

And I guess I’m trying to think about what my question is. I guess my question is in communities in general, how are those valued experiences fostered? Like I don’t, I’m not talking about, you know, somebody with a disability specifically, or a parent or somebody with a disability specifically, but just what do those valued experiences look like in communities where there are members who are working towards that?


Genia Stephen (44m 4s):

Well, I guess this is, I should say, this is this sort of big ideas. And I guess I’m, I think what I’m hoping for are some stories as valued experiences.


John O’Brien (44m 23s):

Well, probably the first thing to say is these, this sort of big bundle of words are based on lots of people’s reflections on what seems to work and what we encounter as we’re doing things that seem to work.


John O’Brien (45m 9s):

So once we step outside of the expectation that post-secondary education is only for people who have high levels of abstract intelligence, as opposed to people who have the other eight kinds of intelligence, right? Once we, once we step outside of that, in my view, the work just begins because I don’t know how to say this.

John O’Brien (46m 2s):

Right? But my experience keeps telling me that no sooner do we make a move? Then this force of social exclusion, wherever the hell, it comes from, figures out a way to make a counter move, figures out a way to limit what we’re doing. A lot of those limits are predictable. So years and years ago in Ontario. Yeah.


John O’Brien (46m 42s):

My dear friend, Marcia Forest was mixed up and a whole lot of work to make school systems better. Right. And there were inclusion action groups all over the problems. Yeah. Right. Little groups of people, parents, mostly brothers and sisters, some trying to figure out yeah. Trying to figure out how do we, how do we make our school better by including people with developmental disabilities at that point?


John O’Brien (47m 29s):

There’s lot of energy flowing. I don’t think there are individual doings, but somehow inclusion gets encapsulated and becomes a dose.


Genia Stephen (47m 57s):

It becomes a what? Sorry, John?


John O’Brien (48m 00s):

A dose.


Genia Stephen (48m 01s):

A dose.


John O’Brien (48m 03s):

Stephen will be included in art and math or art and gym or whatever.


John O’Brien (48m 18s):

Bless you. You know, and that dose is metered by an IEP, which is controlled by the task, right? The task of how do we make our whole school system capable? Oh. Being a place where each belongs, where all are welcome and where everybody has a chance to be an active learner, that agenda gets lost.


John O’Brien (49m 0s):

It turns clinical. It becomes professionally controlled.


Genia Stephen (49m 10s):

Yeah. I just want to say I was just, have you ever seen the movie, The Never Ending Story? It’s an, okay. So it’s an, it’s one of the few movies where I haven’t actually read the book. It’s an old, old movie. Now, if people haven’t watched the movie or read the book, you definitely should. And in the Never-ending Story, the nothing is expanding. And when you’re talking about, you know, this encroachments happens, you know, people are doing good things and then vigilance drops or it becomes perverted or co-opted.


Genia Stephen (49m 55s):

And I’m just imagining this sort of the, nothing is always coming.


John O’Brien (49m 59s):

Sure. Well, the nothing is always there and that’s its nature. It can’t help it. So it’s up to us to figure out what we can stand and what we, can’t, where we have the resources and the opportunity to learn, to push back a little bit or a lot. And a lot of this has to do with much bigger waves, right? At the time that inclusion action groups were meeting around Ontario, there were Canada was bringing home its constitution.


John O’Brien (50m 49s):

And there was an opportunity for big national arguments about the inclusion of intellectual and psychiatric disabilities and the charter of rights and freedoms in the United States. People were organizing to pass the Americans with disabilities act. There was a lot of sort of big stuff moving around, big conversations that allowed for work. Well, it just, it was a different, the context was different, right? There’s kind of excitement. And then we begin to see the limitations, not nothing bad about it.


John O’Brien (51m 36s):

Just everything’s got a limit. And so do claims of legal rights, right? Canada can sign and ratify the con the UN convention and still nothing changes. Institutional arrangements and segregated, special education classes were plural. And as a society, as people, and we have different perspectives and different values. And our work of persuasion is nowhere near done because our work of actually creating better opportunities for the good things of life to come to people is we’re, we’re still getting working on it.


John O’Brien (52m 31s):

And so when go ahead,


Genia Stephen (52m 33s):

I was just it’s okay, please, please continue.


John O’Brien (52m 40s):

So when, for instance, my friends in Madison, Wisconsin, way back now, we’re operating as staff people in an apartment living program where everybody had a list of checklist of things they had to learn in order to be independent.


John O’Brien (53m 17s):

When my friends, Gail, and Howard, and heard in people that they were disciplining to do their programs, we want to live in our own place. And we want to get you guys the hell off our back. These were very capable folks. We would happen to get tangled up in special education. Then a bunch of them in group living arrangements, they said, we need a new way, right? And the lead came from that desire for more freedom for people.


John O’Brien (54m 1s):

So they separate housing from support, help people find their own departments and figure out how to support them there. That’s the beginning right now, you’re in the right place. Possibilities exist. Some of those possibilities, there’s kind of scary. You have the possibility of getting exploited by people who show up when your social security check does and getting it to have a party and provide the beer.


John O’Brien (54m 48s):

So what are we going to do about that? What’s our responsibility. Where do we fit? There’s also the possibility that you find places to belong in your neighborhood and people to connect with, begin to think about what now is possible that this person has had these two experiences. And that process goes on till today. And now those people who saw organization supports are now dying, right?


John O’Brien (55m 30s):

They’re there, they’re old, they’re old people like me. And they’re facing the end of life, many with additional disabilities, which show up as quick as a stroke. Now, what do we do? What’s our responsibility to these people? There are forces in this long-term care system that want to take these people away, that want to say their level of care has now exceeded your competency, right? Yeah. You need to, you need to go die in a nursing home.


John O’Brien (56m 13s):

What are you going to do about that? But lots of these folks don’t really have active family members and what circles they had gotten frayed and tattered over the years. Right. So there’s no end to what you can learn. You just have to see what can you stand and what can you stand for?


Genia Stephen (56m 46s):

Right. Yeah. And it’s, it’s insane. I love the way you’re talking about each of these situations that might otherwise, at least in some circumstances would be called a crisis.


Genia Stephen (57m 3s):

And talking about that as discovering a new edge, which opens up possibilities, because it doesn’t feel like that a lot of the time. I mean, it’s, it’s interesting that you chose the example of the person who has disabilities and then suddenly has a stroke. So in November, my sister, who’s 41 and has disabilities all of a sudden developed a condition called <inaudible> syndrome, which causes widespread paralysis. And she’s was living in the intensive care for four months on life support is now off life support.


Genia Stephen (57m 46s):

But now we are facing those same questions like what’s next because she remains paralyzed and living in the hospital. So luckily she does have a healthy family support and other supports, but the, it has felt certainly a heck of a lot more like the nothing closing in, on us than it has felt like coming up against a new edge where we can, you know, sort of not blindly or, or, you know, or blindly, but with some enthusiasm, consider it a new possibility for figuring out more and, and sure, sure.


John O’Brien (58m 37s):

It’s overwhelming. Right. It’s in the moment.


Genia Stephen (58m 40s):

It is overwhelming in the moment. Yeah, sure. Yeah, sure. But I agree too, that the, you know, some of the greatest things that we’ve been able to support my sister or my son to do in their lives came after we, after we jumped off one of those edges. Sure. Yeah.


John O’Brien (59m 04s):

But again, that’s, that’s one way to think about that is that’s the place where the challenge to community comes in our healthcare system.


John O’Brien (59m 27s):

Again, I’m obviously no knowledge whatsoever of your sister’s situation, but it’s an expected thing that there’s a situation, a response to the appearance of those symptoms that puts the person at risk of long-term institutionalization, right? The system is biased in that direction and is struggling to contain the costs, all that.


John O’Brien (1h 0m 15s):

And so, because we have difficulty engaging fluctuating dependency or dependency that increases markedly and immediately because our system pretends that that almost pretends that that doesn’t happen. Or that when it happens, we have the answer and the answer is chronic care or whatever, because that work isn’t being done collectively.


John O’Brien (1h 0m 55s):

We have to, we have to bear it at the level of family. And when family is not available, a person has to bear it and its consequences within the limits of his own body or her own body. So the immediate situation is much harder to resolve because we’re trying to learn how to have healthcare system that appreciates what gets called chronic hill.


Genia Stephen (1h 1m 54s):

Yeah. I’m wondering if you can loop this back to this example, back to what we’re, I think, I feel like I’m going to phrase this incorrectly, but called what community is called to do or the responsibility of community, if we want strong thriving, interdependent communities. So basically just repeat yourself, but you know, we’re talking about this example of, you know, somebody who who’s, who’s facing a service system response, which is, you know, long-term care outside, really outside removing them from community or my sister’s situation specifically, if that’s easier, but essentially where the service systems responses to remove somebody from community.


Genia Stephen (1h 2m 48s):

And so I’m just wondering if you can kind of repeat what you said earlier about what’s community’s responsibility.


John O’Brien (1h 2m 55s):

I don’t think about it like that. Okay. I think about it as I think about it as developmental, as an opportunity for development, rather than a responsibility. The difficulty, well, the, the difficulty being that when you ask what’s the community’s responsibility, it, it has the potential to divide us to say, there’s the community over there.


John O’Brien (1h 3m 34s):

And they owe us it owes us something. Right, right. It’s not delivering. Right. And that’s not that well, that, that is a perfectly reasonable pattern of thinking for lots of, lots of situations, right? You promised you do this, you’re not doing it right. You know, let’s figure it out. What are we gonna, what are we going to do? But it seems to me like we’re in a situation of lots and lots of unresolved issues that changing demographics are bringing home to us.


John O’Brien (1h 4m 24s):

Right. That we haven’t had to look at some of these difficulties before, as we’re in a situation where our demographic realities reduce the ratio of workers to people over 80, we have to face things that human beings haven’t ever had to face before that have to do with how are we going to pay all us old codgers or are we going to pay her social security?


John O’Brien (1h 5m 7s):

More importantly, who’s going to look after us. Right? Who’s going to cause the number of people that are available to do the work or support, you know, the composition. So we’ve got these things we’ve never faced before. So in parallel to your sister’s situation where the nursing won’t win, because she has you and your family and the other allies that she’s accumulated, I am pretty sure through her lifetime with good support. So she’s in a great position.


John O’Brien (1h 5m 51s):

No, not because the community owes or something, but because citizenship has been exercised around her and by her, right. That there’s, there’s a, there’s a social body that includes her and can hold back that nothing or mitigate its effect if we can’t figure out what to do. So anyway, it isn’t in my mind that a community community is us.


John O’Brien (1h 6m 36s):

Yes. And we’re up against uncertainties that we don’t understand very well, but the lives of people that we love and care about as individuals and that we’re civically concerned about as a population, engages these issues in a way that makes people with intellectual and developmental disabilities, a threat to the bigger consensus and makes the people with disabilities who are experiencing the most of those valued experiences, a threat in a positive way, but in a way that confronts these beliefs, these are not self-sufficient individuals, ruggedly cultivating their own oil Wells or whatever the hell, right myth.


John O’Brien (1h 7m 45s):

There is a of independence. These are people that bring dependency to us as a reality embodied in people we love and care about and bodied in people. We recognize this whole people and citizens and lots of other people don’t see that yet. Lots of other people think I’d rather be dead and be again.


Genia Stephen (1h 8m 24s):

I’m conscious of our time, John and not taking up too much of your time. But I wonder, it seems to me that, that the, you didn’t use the words radical, but the radical hospitality, you know, expanded hospitality is one of the things that you’ve suggested that is the antidote to that. Like just the possibility for relationship with people that wouldn’t otherwise wouldn’t be connected to, or, or have reason to come to understand their life deeply. Like you were saying, people saying, you know, I’d rather be dead and there’s endless versions of that sort of rejection of the other, right.


Genia Stephen (1h 9m 12s):

It doesn’t just have to be a death wish. But is that, is that part of partially why hospital expanded hospitality or radical hospitality is so important is in the, in the minimizing us, in them and moving towards a we?


John O’Brien (1h 9m 35s):

But again, from my point of view, the, the what’s interesting to me is the contribution that people with intellectual developmental disabilities themselves make by extending hospitality.


John O’Brien (1h 9m 53s):

Right? So for me, one of the big tests of any kind of arrangement that supports people, where they live is how is hospitality expressed here? How does this household welcome people? And we see in gathered communities, intentional communities, which are themselves undergoing incredible turbulence difficulties, but large camp hill. We see the power of the hospitality of people with disabilities to affect and influence people.


John O’Brien (1h 10m 41s):

And so when families of younger children, for instance, welcome their clergy, welcome their neighbors, welcome other people into a support circle for their son or daughter that provides an embodiment of interdependency. Right. And when lots of people are understandably reluctant, no, I don’t want anybody in my business. No, I don’t want anybody in our families affairs.


John O’Brien (1h 11m 25s):

I don’t want to count on somebody else. That’s understandable. Absolutely understand. I understand. It didn’t feel like that. Well, sure. Yeah, absolutely. But on the other hand, when as many people with disabilities do when people are willing, I mean, the extent of the amount of trust that particularly people with more substantial needs for assistance have to invest every day. And the people who are around them is astonishing, astonishing.


John O’Brien (1h 12m 13s):

And so we’ve got these kind of complicated situations. And the question is how to frame them in such a way that over the long run, we’ve got a chance to learn enough to take the next step. And that’s what this framework of valued experiences, community challenges, accomplishments supports is trying to point out


Genia Stephen (1h 13m 01s):

John, if people want to learn more, where would they find you or your writing?


John O’Brien (1h 13m 07s):



Genia Stephen (1h 13m 16s):

John, thank you very much. As I said at the beginning, I have been really excited about the opportunity to speak with you. And I can say now that I have spent more years aware of you and admiring your work and being influenced by your work than the years before I knew of you and your work. So it’s fair to say I’ve been a lifelong fan and am deeply, deeply grateful for the work that you and Connie and your other friends and colleagues do to think really, really deeply about community and about supporting people with disabilities to live good lives and have access to the good things in life.


John O’Brien (1h 14m 5s):

Well, God knows what you’re going to make of this, but I hope we can get a few minutes of it out of it better that are useful to people.


Genia Stephen  (1h 14m 16s):

Yeah. I I’m going to share it all. It’s been useful to me and I imagine that I will not be alone in that. And I hope that we can do this again at some point.


John O’Brien (1h 14m 24s):



Genia Stephen  (1h 14m 25s):

Thank you so much, John.


John O’Brien (1h 14m 27s):

Thanks, Genia.


Nick Burt-Miller (1h 14m 36s):

Thank you so much for joining Genia on the podcast. We hope you enjoyed today’s episode. See you next time.


Thanks for Listening!

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Special thanks to John O’Brien for joining me this week. Until next time!

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Genia Stephen
Genia Stephen

Sister, mother, midwife, writer, speaker and perpetually curious. Dedicated to bringing you the voices, ideas and conversations of world class mentors and thought leaders in the field of disability.