Dreaming Ordinary - with Mark, John & Connie Susa

It’s a narrative that often gets repeated to parents of young children with disabilities: the more services the better. But John and Connie found a different way early on with their son Mark. Their family’s dream was bigger. The vision they have for an ordinary life really gets to the heart of why this podcast started - to offer out ideas for families and people with disabilities to go after more in life than the expected route of disability services and segregated activities.

As founders of the Plan Institute in Rhode Island 15 years ago, the Susa family connected with Starfire to learn how to launch community projects. They said that this way of bringing people together, over a shared goal like a community garden, generates a certain magic - almost instantly.

If you are someone who wants to think seriously about how you and your loved ones spend your time, how to connect more deeply in community, and ways to make longterm relationships a reality, this episode is for you.

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FULL TRANSCRIPT:

CONNIE: - I have heard speakers talk about this concept as a way of healing the world and as we’re in the midst of the COVID19 virus outbreak right now, I think the world could use a lot of healing, not only physically but also in terms of relationships. We have a new neighbor who shares that passion with us, and it has been such a joy to get to know one another, to have a real give and take. I can see how if this were multiplied throughout communities, and states and nations, the world would be a beautiful place.

KATIE: Beautiful.

JOHN - I’m John Susa. I think what moves me for a lot of this work is almost a therapeutic plan for me. I grew up very very isolated and I had very few interactions with anybody besides my family. And most people would have described me as being very introverted. When people asked me when you were a child, what did you want to be when you grew up? My answer was always the same. I wanted to be a long distance truck driver. So I could sit in that cab and not have any human interaction for days. And if left to myself that’s probably what would have happened. But instead I learned that if I pushed myself a little bit and started interacting with people and meeting people then I could change that desire to be a loner. And so I think the reason I’m so involved in all of this stuff is still mostly for myself to avoid falling back into be a loner. So I made pretty much a conscious decision that I was just going to change my behavior first. And of course after I changed my behavior for a while my attitude started to change.

Fast forwarding then to when you and Connie met, and you had children and you were - down the road, you know, deciding how to engage as a family in the community, what were some of the things that you had to consider first to be connected?

JOHN - I think for me the recognition that Mark developmentally was experiencing life differently than others made me realize it was going to be very helpful if I became more engaged in the disability advocacy world. I was kind of driven by two different quotes that were in my head that I learned while I was in the military. And they’re very a-typical but they’re very powerful. One is from Johann Goethe a German philosopher and he said, “Dream no small dreams for they have power insufficient to change the hearts of men.”

That’s been something that I’ve always come to recognize as a very powerful piece of instruction and advice. And I saw that there were people who were encouraging us in many ways to dream small, to be satisfied with what Mark is able to do, focus in on his disabilities, spend your time searching out services. In many ways that was dreaming small.

There were occasionally people who would say, “No, no, no don’t do that. Dream big. Dream like Mark’s future is limitless. Dream like if you just provide him with all the opportunities that life has to offer, you will be amazed at how much he is going to accomplish.” And that is what I took from Goethe, dream big. And we have ever since. And that really has kind of put us into contact with a lot of other big dreamers. It’s those big dreamers that really have changed the world works for people with disabilities.

KATIE - Beautiful.

MARK - Excellent.

CONNIE: - For me in terms of community building, I think one of the greatest advances has been our church. Mark turned three at the end of December.

MARK - Right.

CONNIE: And three-year-olds were supposed to begin in what most people would call “Junior Sunday School.” When Mark was three, we were still carrying him - cradling him in our arms. Did you know when you were three years old you couldn’t sit up by yourself?

MARK - No way, really?

CONNIE: Truly. Mark just kept attending our Sunday school classes with us and about two, three weeks into that sequence one of our friend’s who taught the three year old class, the Sunbeam class, came to us in the hallway and said, “Why hasn’t Mark been in my class?” And I said, “Edith - look.” As if seeing where Mark was at that moment meant everything. And she said, “Yes, but look at my role.” And Mark’s name was there, without x’s in the attendance boxes.

And she said, “We really need him in our class.”

And I said, “Edith he can’t even sit up independently.” She said, “Well we could get a highchair and we could put pillows all around it so that he can sit up.” And I said, “We’re not even sure that he can understand what you’re teaching the other kids.” And she said, “That doesn’t matter.”

She said, “The reason I need Mark in my class is because all the other kids have so much to learn from him.”

MARK - Really.

CONNIE: And while we had been working seriously on stimulations and Mark had gone through early intervention and we learned about you know sensory stuff and what have you. We were doing that once a week, in a group and the rest of the time at home. But what Edith had said really started Mark and us on the path to community. Mark now…well, tell Katie what you do at church.

MARK - A lot.

CONNIE: - Some things that you’re responsible for?

MARK - I’m secretary.

CONNIE: - Secretary for what?

MARK - For attendance.

CONNIE: - Yup, and you set up appointments for interviews.

MARK - Set up appointments for interviews.

CONNIE: - We were amazed, Mark was enfolded in the arms of these people who understood all about community because that fits the teachings that we have as Christians.

Going back to what Edith had said to you that you know, diversity and having different types of learning in a classroom is really really really important and once you accepted that invitation, what unfolded in that first year?

JOHN - What I remember is that it reinforced something that I came to realize, everybody became comfortable and it was now normal and accepted that Mark would be part of that congregation. Once people got to the point where they were comfortable because of exposure and experience they relaxed and they accepted Mark for who he was. And they didn’t feel the need to treat him any differently than they would any other child. It reminds me of another one of my kind of guiding principles and this comes from a guy, Rudolf Steiner, talking about early childhood. Rudolf Steiner is the founder of the Waldorf educational system. Are you familiar with that?

KATIE - Yes.

JOHN - He said that, “There is nothing more therapeutic than normalcy.”

That was a piece of advice that was given to us by a good friend, developmental pediatrician, when Mark was finally identified as having all these developmental challenges. The meeting at the end of the two-day evaluation process was nothing but a group of people who were very pessimistic about Mark. “He’s not going to walk. He’s not going to talk. He’s probably not going to be aware of you. He’s certainly not going to hear.”

A whole bunch of things, they all at the end say “Well, good luck, take him home and love him.” That was their advice, which is good advice but inadequate.

When they all left, their boss who was sitting at the back of the room observing asked us to go into his office because Connie was bawling. Sig closes the door and the first thing he says is, “Don’t believe a word of what those people said to you.” And I said, “Sig if you say that, why didn’t you stop them before they started?”

And he said, “You know all those people in that room were doing or could do is describe Mark now, as they see him. They could not possibly describe Mark in the future. I believe if you believe them, that future will happen. If you don’t believe and you adopt the approach that the best thing to do is to have Mark experience as much normalcy as possible he will become a different person. He will become more like the ‘normal kids’ whatever that may be. Every person will develop depending on how much they’re exposed to.”

So he said, “I’m not going to let them label him because that will result in other people reading the report and it will only help them treat him in a stereotypical way based on his label. I’m just going to say he’s developmentally delayed.”

And his advice was, “Take him home and love him but then help him have every normal experience as other children.” And that kind of guided our thinking really from then on.

KATIE - And you know, dreaming big in this instance is to dream ordinary, to dream normal.

JOHN - Exactly. Yeah.

KATIE - And sometimes ordinary is the biggest gift anyone can have.

JOHN - Right, right. It’s kind of counterintuitive because in the world of disabilities a lot of times people think that dreaming big means getting more services, the more the better, the more services the better. Steiner said think seriously about substituting every hour of normalcy with an hour of service because that hour of service is removing that person from normalcy. So it’s almost in the disability world it’s almost a flipping of thinking that that has to happen.

CONNIE: - Be concerned if you were just going to services.

JOHN - Be big in your thinking by vying for normalcy.

KATIE - Yes, so even in services are... they’re not normal. It’s interesting.

JOHN - They’re not normal.

CONNIE: - What’s more important is that Mark participated not only in that class but every subsequent class. And when Mark was eleven years old we took our school district to a due process hearing because they had adamantly fought us for two years in bringing Mark back into district from a segregated day placement that was anything but normal, because they were sure that Mark would not act appropriately in a classroom setting. They were sure that Mark would be a disruption to other students, they were sure that he might even be self injurious or injury other people,  because they were thinking in terms of stereotypes not in terms of who Mark is as an individual. And do you remember Jennifer Coats, Mark?

MARK – Yeah. The one with the power.

CONNIE: - She came to your hearing.

MARK - Right.

CONNIE: - And she told everybody just how you act in a classroom setting. That you raised your hand just like that, that you participated appropriately in singing time, that you sat with your class and no additional extra support. That you sang the songs that you answered questions, you gave talks.

MARK - Right. Yes I did.

KATIE - So it sounds like Jennifer had another piece of Mark and your family’s story along this journey to dream big, to live an ordinary life? She made an impact during that hearing.

I want to see if we can dip our toes briefly in the water of the day placement that you mentioned, that Mark was in, and how that was anything but normal. Can you explain how abnormal it was or what about it made it not ordinary?

CONNIE: - Sure, the very fact that there were multiple kids with multiple disabilities just ate up so much of the instruction time. What else do you remember about it?

JOHN - Everybody in Mark’s class was just like Mark. Six little kids, wheelchairs. So the biggest thing I believe happened when he left there and went into a regular classroom is that for the first time he started culturally and socially experiencing life as every other eleven, or twelve or fifteen year old does.

KATIE - You agree with that, Mark?

MARK - Yes, excellent.

KATIE - Yeah and I think that’s a good segway to the phrase ‘a good life’ that is something you hear a lot from Al Etmanski and Vickie Cammack. It’s a big part of the PLAN institute model and you all have been involved with PLAN at Rhode Island for quite some time.

So what ways has it helped?

CONNIE: - John first heard Al speak, he recognized the wisdom in their model that we always acknowledge how deeply we depend on the work. When we brought PLAN (Personal Lifetime Advocacy Network) to Rhode Island 15 years ago we knew that we were standing on the shoulders of giants. The two things that we have focused on in trying to replicate their model is we help parents put all their ducks in a row, plan for the time that they are no longer going to be there or able to enrich the lives of their sons and daughters out of the love and the family history, the precious relationships. The much more important part of what they did in Canada and what we did in Rhode Island is to build a personal support network around the member. The family joins on behalf of their son, daughter, brother, sister and they engage with a facilitator to build and maintain that support network so that it’s not just every individual having a relationship with a person at the center of the circle but it is all those people getting to know one another, to recognize one another’s strengths, to trust one another. Between all those group gatherings individuals will do things with the members at the center, with our loved ones. And as parents we try to do that early enough so that we can fill in the important parts of the history.

So the support network is really there to build a circle of support around a person, and yet also it’s not just about the person in the center it’s about everyone in the network joining together, being in relationships together, and in that way being in a community. Where are you now with the support network?

CONNIE: - Right. Mark has had a personal support network for the entire time that PLAN has been in existence in Rhode Island. It really does take some time for relationships to mature that if we had to step off the Earth the next week, this would go on.

MARK - Right.

CONNIE: - And that it would provide Mark with people that he could depend on, people who were real friends, who had proved that over time.

MARK - Right.

CONNIE: - People who enjoy spending time with him. And we feel secure.

In one of the questions that PLAN Institute seems to start with is what would happen to my loved one after I pass on, if I’m not around, if we’re not there to help what will happen? And so starting from a young age it sounds like you guys have done a lot of work to build that support network so that in a time of disaster or otherwise that there is somebody there for Mark?

JOHN - Right. When PLAN in Canada was first put together it was even before Al Etmanski, it was just a group of parents and they hired Al. They originally thought that they were preparing for their demise, the focus was on what’s going to happen? What they quickly discovered was that yes they were doing that but they were also starting to develop a stronger sense of security and the feeling that their son or daughter was safe. There were some very positive benefits to the parents while they were still alive. And they figured it out that it was the existence of this network that provided that sense of security. And not only the sense of it but the actual security.

KATIE - I love how you put that, that’s very clearly stated for me and I think it’s actually it starts as soon as you begin to community build: the benefits, the magic, the parts of it that are really just supportive feeling begin right away. And every parent needs that and we need to raise our children as a village.

You all as a family have taken the brave step being able to say well even though some experts are telling us otherwise we’re going to not believe that and in doing that we are going start this support network early and we’re going to build and the more people who have joined in along the way it sounds like the more momentum has build towards this?

Tell me about your family’s leadership in the community as it relates to your street, and how your support network, Mark, how they were involved in that process?

JOHN - So as we kind of navigate our life with Mark, I’m always looking for things that are in the way of him achieving greater independence. So this little project about looking at Warwick Avenue, Mark and his brother live about two and a half, three miles apart, they both require a wheelchair in Mark’s case or a scooter in Frank’s case. And so when Frank moved back here to Rhode Island we thought, “Wow wouldn’t it be nice if these two guys could get together once in a while without Mom and Dad having to be the go between.”

We started looking at this road and we recognized very quickly that this road was a problem. I’ve known that this road was a problem probably for at least fifteen years now, but I’ve not had a real strong reason for us to say, “Let’s do something about it.” So we naturally thought that this is going to be something that is much more powerful if we have a group involved. We had a group, we had Mark’s network, they all know him, they’re comfortable with him. So we posed the idea, the project, people thought this is great. And the fact is that there is appropriated money from the Department of Housing and Urban Development every year for infrastructure maintenance. But the fact is also is that many states use that money for something else besides not worrying about wheelchair accessibility.

So our complaint kind of brought this into the public eye and I’m pretty confident that we will be able to see some change and some action as we kind of work through the process. But it is also what ever you want to call it, karma, good luck whatever, that here we have our network and one of the powerful things about a network is the fact every member of that network has other connections with other people and within our little group we were able to identify somebody else who is not part of Mark’s network but is only peripherally connected, kind of, who is going to be very helpful in resolving. And you never know who you may know until you start talking and working and interacting in community. Every network is a little community and every little community has a lot more resources than we certainly had by ourselves.

Absolutely and maybe you can share how some of the other families you know in Rhode Island who have similar networks of support like you all do around Mark, how they’ve utilized their networks of support to do other projects in their communities with Starfire's facilitation support. What are a few of those other projects that have happened or sprung out of this collaboration?

JOHN - So in about a month or so another network is going to do a project that is to create a mosaic welcome sign to this little town’s community garden. It’s prompted by a family who have a son who has very significant disabilities but who is a very very talented artist who is really good at sketching and painting vegetables.

So they’re going to take his work and they’re going to create a mosaic welcome sign. This is a family I’ve known for quite a while, also been part of PLAN for a while, and they have dramatically really been able to bring their son like we did out of a special school into the real world and Sid has really blossomed as a result of that real world life experience.

Why do you think it’s important for families to lead efforts toward building community? And how do you think families are helping other people in the neighborhoods see the light of community building, the magic of community building?

CONNIE: - We’ve been told for years on end that certain federal programs are underfunded and that there may come a time that those things are no longer available or that their support and services get shrunken and Mark loves people, he’s a very social person.

MARK - I do.

CONNIE: - You do and you contribute in a lot of ways.

MARK - Right.

CONNIE: - And we’re very proud of that.

MARK - Right.

CONNIE: - So just in terms of politics alone it’s important that we give our sons and daughters opportunities to show that they can contribute to society.

JOHN - From our own experience and from the experience of a lot of people we know that the amount of community, acceptance and inclusion that people with disabilities experience is really very much influenced by how much their family is integrated and included in their community. Our experience was that after Mark started going to special private school we spent more and more and more time at that school helping them with fundraising, helping them with all kinds of stuff and we spent less and less time in our community.

We often meet family with children with disabilities and very quickly they’ll say, “Oh, but we don’t know anybody. We’re not engaged in our community.” And without spending a lot of time we recently were able to recognize that that was because they were spending their time in a different world than their community. So we really really strongly encourage people to become more engaged and more involved. One of the ways is get engaged in a community project and all of a sudden you know a bunch of people, not all of those people are going to become part of their son’s or daughter’s network but some will. And that’s because all of a sudden they know people who have common interests, there are all kinds of things that happen when you start doing things together. These projects are just ways people becoming engaged in their community, as a family, and then as time goes on for that family to be unique and having people have a relationship with that son or daughter who has a disability.

Absolutely. And maybe we’ll end with a quote here I think that is related to everything you just said. It's by Al Etmanski he says, “People are naturally ingenious when faced with adversity.” What ways do you think you all have managed to be ingenious?

CONNIE: - With the COVID19 crisis, Mark’s facilitator of Mark’s support network is putting out requests with two things. One to ensure them that Mark is no more susceptible to this virus than anyone else in the community is. More importantly, because Mark has benefited so much from his contact with all the members of his network, she is going to ask them to engage with him regularly remotely as long as they cannot engage with him personally. He reads and he can enjoy texts and answer emails and appreciates post cards and greeting cards and phone calls.

MARK - Right.

CONNIE: - That’s an adaptation that we’re making right now.

JOHN - We’ve learned that we really have to remain flexible. We have to depend on other people’s creativity and let them interact with Mark in their way. In the beginning when he was younger people would always ask us, “What does Mark like to do?” And a long time ago we basically came up with the same answer, “Well I don’t know, ask him.” Not only ask him but invite him. Mark surprises everybody with his ability to express his enthusiasm for things.

KATIE - I love how you turned a question into a way to mobilize community to be more involved and be more inclusive. It’s wonderful to meet and hear your story.

JOHN: As parents we’ve benefited from such wonderful and powerful messaged from guys like Tim (Vogt) and Al Etmanski and David Wehterow and John O’Brien. There’s a million of these messages that we’ve been lucky enough to try and hear and try and incorporate into what we’re trying to do for Mark. That’s what it’s all about we’re doing it for our family first - and hope that other families will see what we’ve done and will say, “Hey if those guys can do it so can we.” That’s the power of this movement.

KATIE: It’s actually moving, it’s doing something. That’s the exciting part of it. Thanks for being movers, so great to meet you.

MARK: Good-bye.