All About Creating A Vision For Your Child’s Life -Episode 43 with Genia Stephen
Today we are discussing how we can parent with the following goal in mind: to help our kids grow into adults that lead full, inclusive, and wonderful lives.
Joining me is Genia Stephens, host of the Good Things in Life podcast, for parents of children with disabilities.
This week on the All About Audiology podcast:
- 1:01 – Genia’s younger sister was born with an intellectual disability. Her mother was a fierce advocate who brought the whole family on board. Later, Genia’s second son was also born with a disability.
- 4:38 – Genia wanted to create a space where parents could come together around a shared vision of a positive future for their children with disabilities. This would give parents the opportunity to support each other and figure out how to access the “Good Things in Life” for their kids.
- 06:58 – Even if your child cannot walk or run, interaction and play with other children is still important. For those children who are born deaf — some will learn to speak and some won’t but having some form of communication is the goal.
- 9:56 – Norman Kunc is a disability advocate with cerebral palsy. When he was in school, he quit speech therapy and transitioned to a mainstream school against the advice of his speech therapist, but found that it actually helped his speech develop.
- 13:08 – Parents of disabled children receive lots of help with therapy and education goals, but not much direction in creating a life that is rich with relationships and opportunities for their child. Take the time to set a vision for their future.
- 15:30 – Don’t forget — we are raising our children to become adults. While children with disabilities do need support and assistance, we must also take the time to foster independence.
- 23:23 – Most people have social connections with other people who can help them obtain “the good things in life”. Unfortunately, people with disabilities only have one fifth of the number of significant relationships as those without disabilities.
- 28:50 – F-I-G- Method – Having a long term vision for your child can result in easier decision making right now, when it comes to choosing education and services.
- 34:51 – For many people with disabilities, the role of “client” can become their single most dominant role. Most of the people they spend time with are paid to be with them, as opposed to friends who are there by choice.
- 40:07 – If romantic relationships are a possibility in your child’s future, find ways to discuss this with them. They will need to be able to recognize inappropriate behavior, in order to protect themselves.
- 44:33 – Parents can create opportunities for their children to build friendships and social capital. This can be done by creating a vision for your child, focusing on their social roles.
- 49:02 – Having something in common can be a powerful tool in building relationships. Parents can take an active role in helping kids to see what they have in common, even something small like both kids having braces.
For more resources and research visit:
Mentioned in this episode:
- Being Realistic Isn’t Realistic – with Norman Kunc & Emma Van der Klift
- Five Basic Points to Focus On For Safety During This Pandemic
- The F-I-G Method for Managing Difficult Interactions – with Dr. Lilach Saperstein
- Janet Klees on Building a Context For Relationship
Listen Next/Related Episodes
Episode 38 – All About You
Next time on All About Audiology:
Episode 44 – August 2020 Moms’ Support Group: All About You
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Welcome back to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein. Today, I’d like to talk about how we as parents can look at our child’s life and look at our parenting with the goal of helping to maintain and create beautiful, inclusive, full and wonderful lives for our children.
With me today, I have Genia Stephen, who helps kids with intellectual disabilities build inclusive lives in school, at home and in a community. She is the founder and host of The Good Things In Life podcast for kids with disabilities. She also manages a community of parents of children with disabilities.
Dr. Lilach Saperstein: “Genia, welcome to the show.”
Genia Stephen: “Thank you so, so much for having me. I’m really excited to be here and excited to be spending more time with you.”
LS: “Thank you. So, I want to ask you about yourself and how you came into disability work to begin with.”
GS: “Yeah, sure. So, I have a younger sister, I mean we’re not young anymore, we’re in our forties, but a younger sister who has an intellectual disability. And I had the great fortune of having a mother who was a really fierce advocate and she really kind of brought our whole family on board. So, I had the great blessing of growing up in a disability-positive community surrounded by internationally renowned thought leaders and mentors. I really received a world class disability parenting education just growing up. I did some work in the disability field and presented it. Did some teaching myself, as well. And then fourteen years ago, I had my second son and he has disabilities as well. So, I kind of came on board as a parent, in addition to being a sister.
My mom was really involved in the disability parent movement for my sister’s whole life, and she still is. And I was not really sure where I fit into that. And my other world is that I’m a registered midwife in Ontario, Canada. Over many years, I’ve worked with hundreds and hundreds of families and it became really apparent that the experience of most parents of having a child with a disability was very dramatically different from what I had experienced. And I already knew that. But one of the key differences that I was seeing over and over again, was that one, I didn’t have to learn a bunch of stuff. Also, who surrounded me and the kinds of ideas that surrounded me when my son was born was dramatically different than what other parents experience.
So, when my mom first received a diagnosis for my sister, parents of her generation either looked something up in the yellow pages, which some young parents might be even so young as to not remember. But the phone book used to be how we found phone numbers. So, they would look up something in the phone book or maybe their family doctor would provide them with a brochure or something like that. And they would get connected with another parent or an organization or that kind of thing. But what happens for parents now is that they get a diagnosis, or even suspicion of a diagnosis, where they are in that unsure and uncertain phase of things. And they will immediately Google that diagnosis and what they get from Google is a list of complications and a list of Facebook groups around that diagnosis or treatment modality. And that list of complications and the Facebook groups around a specific disability tend to then frame those future conversations.
In addition to that, most parents are introduced to a medical model of disability, meaning that their idea of what disability means is based in sort of a medicine, an allopathic western medicine model. And then they go in to the school system which has sort of a similar medical model. So, I just decided that perhaps my place in the parent movement was to meet parents where they are when they are starting, which is online, because now we have this amazing capacity to find each other and to come together online. I would create a space, where instead of coming together around a diagnosis, parents had the opportunity to come together around a shared vision of a positive life for their child with a disability and to support each other, to figure out how to access the good things in life for our kids.”
LS: “Wow! That is a mission. I love the idea of coming outside the medical model, outside of diagnosis-focused framework to look at everything not as what’s lacking, what’s missing, or what’s wrong and instead say, what do we have and what are our opportunities and how do we make this amazing and great for our life. Wow!”
GS: “Yep. And it’s not to say that medicine or therapy or intervention or treatment has no place in our kid’s lives. That’s not at all what I’m saying.”
LS: “Of course.”
GS: “But I do firmly believe that the treatments, the therapies, and the interventions, they need to be in service of something bigger, they’re the means to a particular end, they’re not the end in and of themselves. But when we’re going to all these doctor’s appointments and therapists and they’re coming up with these plans, often which we can’t reasonably even keep up with and still maintain any kind of typical life, it’s really all about the intervention, as opposed to figuring out how that therapy or that intervention actually serves to help them have a good life. And if we haven’t defined what a good life is, then we can’t really know whether or not our interventions are helping.
One of the things that I believe to be true is that whether our interventions work or don’t work, we’re still left with the same questions about how to help somebody have a good life. So, when you know, the physiotherapist or the occupational therapist is saying, ‘Well, you need to do these exercises so that your child can walk properly or run and play or those kinds of things.’ I know that’s not an audiology example. But you know, that’s great. But whether the child ever learns to walk and run or doesn’t learn to walk and run, the playing with other kids and developing friendships still needs to be pursued. And some kids are not going to learn to walk and run.”
LS: “That’s right.”
GS: “So, if you’re only focused on the development of the walking and the running, you’re missing out on the potential for play and friendship if nobody has helped you think about what actually matters around play and friendship.”
GS: “Walking and running matters. But it’s not the only thing that matters. It’s not the only wedge to get to play and friendships.”
LS: “Yes. And this reflects, I think, the conversation that we have all the time about learning to speak. Children who are born deaf or with severe hearing loss, we know to do cochlear implants. Let’s do intense auditory verbal therapy to teach them to speak. And for some children, that’s going to be the way and that’s really successful and they become mainstream and go on and do anything that a typically hearing child might do, but not for everybody.
For some kids, that isn’t the thing that’s going to work there. You know, there’s lots of other factors that go into whether or not they’ll be able to learn to speak. But the question is, “Why do we want someone to speak?” It’s so that they can communicate and hey, we can get to that in a different road. And all the roads will lead to communication. So, maybe we have different communication modalities. That’s a big message on this show. I think there are all these different routes to get to your goal, but you have to know what the goal is, and not make the path itself to be the end goal, like you must learn to speak.
And I just have to share one Instagram post that’s coming to my mind and I don’t know who said it. This is from months ago. It was a mom who shared that she had seen her child struggling week after week after week to pronounce the word bus in auditory verbal therapy. And that was the entire goal, for them to be able to say in succession, these three sounds to put together “B”, “U”, and “S” for bus. And that meanwhile, he was signing three-word combinations and he was requesting and he was able to do so much in communication and they were so focused on just this articulation. She just had that moment with the one session about constantly trying to get him to say this with articulators that maybe you know he didn’t have the motor strength for or the hearing ability for it.”
GS: “Mm, hmm.”
LS: “That’s my point.”
GS: “So, yes, we want kids to speak. It matters! It absolutely matters and communication is critically important. But if they never have anybody to talk to, then it doesn’t matter nearly so much. I’m reminded of a story that Norman Kunc (pronounced Koontz) tells. Norman is an enormous disability advocate. He’s a well know speaker and he has cerebral palsy. And he talks about when he quit speech therapy. And he was transitioning from a school for kids with cerebral palsy, this is decades ago, a school in Toronto for kids with cerebral palsy without intellectual disabilities, where they received intensive speech therapy to regular school with his neighborhood peers. And one of the arguments against him making this transition was that he wouldn’t have this intensive speech therapy. And, he tells the story much better than I do, and I can give you the link to the podcast episode where he tells the story if your listeners would be interested, but you know, that’s one of the things that he said to his speech therapist is that if I don’t have anybody to talk to you, what does it matter how well I speak?
And in fact, what happened is that he did transition to the neighborhood school. And he found that some people when he spoke to them in his regular voice, they could understand him and that went well. But other people couldn’t understand him. And he noticed that they just sort of started to smile and nod and their eyes would glaze over and they would find a reason to discontinue the conversation, unless he used a speech therapy voice which was highly articulated. And what he found is that he had to use his speech therapy voice so much in order to be understood and to develop relationships and be heard by his teachers, that his regular speaking voice became clearer and clearer and clearer. And so, he jokes about the fact that the trick to him developing really comprehensible speech was actually quitting speech therapy.”
LS: “Yeah, and going to immersive.”
GS: “Yeah. Because he had the reason. Well, yes, it’s immersive. But the point for him, and the point that I’m trying to make is that it’s about the friendships, and you know, being in that student role, and not actually about the intervention.”
LS: “Maybe it’s more about the motivation for succeeding.”
GS: “Yeah, yeah. We can talk about it as a therapy or an intervention. And we can talk about the importance of role modeling and immersion, regardless of your modality of communication. And that’s important in recognizing that when you pursue something like friendships and play, I think parents should feel confident that they are actually not giving up or selling out their therapy goals. So, that’s a helpful piece for parents who are worried about making sure that they get all of the hours of therapy and that you’re not actually getting rid of your therapeutic goals.
But I think the other piece is that you have to know where you want to go in order to get there. We don’t get a lot of help with that as parents of kids with impairments or disabilities. So, an awful lot of people are ending up graduating from high school and finding that they have no life because they’ve always had therapy goals and they’ve had educational goals, but they haven’t actually been building a good life, rich with relationship and opportunity and expectations, high expectations. So, part of what I talk a lot about is just taking the time to set a vision of what do the good things in life mean to you, and probably, it’s pretty much the same as what the good things in life mean to me.
There’s actually been some research to show that, kind of across the globe, if you ask people, “What are the good things in life?”, there are slight differences, but they’re more different flavors of the same ideas, you know. Things like our basic needs, like shelter and reliable health care and food. But then beyond that, it’s things like friendships, an opportunity to contribute, a sense of belonging, ongoing personal growth. These are the kinds of things that are the good things in life. If we’re gonna set a goal and if we start with those and work backwards, we may not get everything we want, but we’re likely to get a lot of really good things.”
LS: “We reach for the moon, and even if you miss, you’ll land among the stars. I had that poster growing up for a long while. Hahaha.”
GS: “Exactly, and it may not be spectacular, but when you consider the alternative of not having a vision, or the alternative of being stuck in a mindset of deficit and disability and lack and low expectations, the stars and the moon aren’t even on the map as a possibility.”
LS: “I’ve heard some parenting advisors and advocates talk about how a lot of times we see it as raising children, which we do as parents, but that some of our goals also have to be that we’re raising adults, raising children to become adults, so that they won’t always be dependent on us and they won’t always need us. And it’s, I think even more so apparent when there’s disability or special needs, or anything else going on, that you have this on both sides. Because on one hand, they really do need support and assistance. On the other hand, we do want to also foster independence.
What are some ideas that you can share, strategies for developing independence within the context of the child’s needs?”
GS: “Well, I think that, particularly within the realm of disability, I mean that broadly, not specifically, I don’t mean to say that this applies to every single person with any kind of impairment or disability or special needs.”
LS: “I just have to say right there that that’s what’s so hard about a lot of these conversations is that it’s so case by case and severity is so different. So, that’s just for the whole conversation.”
GS: “Yeah, absolutely. In general, but not suggesting that everybody fits into the “in general”, but certainly as people’s impairments or disabilities or special needs get more complex, there’s two ideas that I think are really helpful, maybe three.
One is thinking about interdependence instead of independence and autonomy as just a really good model for human life and community, not just specific to people with disabilities. Particularly, if you’re thinking about fostering or raising adults, future adults, as you’re saying, thinking about human community as a model of interdependence, I think is more productive than thinking about how to help people to be independent. Because the bottom line is that none of us are, and people with disabilities that are very, very significant may not be able to have the kind of independence that we might think of as the stereotypical independence of an adult. And that’s not a problem. When you think about it as a model of interdependence, that’s not a problem.”
LS: “Will you just define what that means?’
GS: “Yeah. The idea of interdependence is really just this understanding that we are all very much connected in both need and contribution. And so, I might have some gifts to give you that you desperately need and maybe what I give to you, Lilach, is direct support like, interpretation or translation or personal care, personal physical care.
Perhaps the gifts that you give to me are a sense of safety and security and trust. And I know that I can talk to you and that I’m a safe space and a safe person for you. And, I’m just making up examples here, but the idea of interdependence is that we all have both needs and contributions in this world and it undermines the idea that any of us are kind of solo actors in our lives. And we have a lot of illusion of that particularly in modern Western capitalist society. But it really is an illusion. You know, I think it has sort of been an interesting opportunity with the Corona-virus pandemic and COVID-19 as our societies have shut down for safety. The conversations that have been happening around “What is an essential service?” and then all of the impacts. In some ways, most of how we work as a society to support each other is invisible to us.
Think about with all the things happening right now with racism and anti-racism and the responsibility that people and others have to pay a cost in order to address and even provide reparation for the harm that has been caused to black people and people of color. And I think that it’s also this interdependence piece. One of the things that I think a lot of people aren’t clear about is that black people and people of color have all of the things that make us, like all the illusion that we are actually where we are in our lives because of something inherently independent or inherent about us is actually built on those bodies and the work of black people and people of color and structures of racism.
And so, it’s an interesting time to be having conversations about interdependence, you know, because it can be healthy or it can be unhealthy. And, you know, if there’s an unhealthy imbalance in contribution versus needs, or want, or exploitation in this case, it needs to be repaired, or systems are going to break down. When we’re talking about disability and supporting kids with disabilities to grow up to be adults, we need to be thinking about interdependence, both as a healthy model and a reality but also having high expectations that our kids are going to not just require support, but that they’re going to make a contribution to their community as well. It’s part of what leads to the good things in life both for our kids and in community in general.”
LS: “Yeah, I’m very glad that you mentioned that. I think that’s incredibly important. When we talk about parents and children, many times people will see it as there is an authority over here, there is power that the parent has over the child. And that’s, you know, that’s just the nature of the relationship. But then there’s abuse of power where that’s a whole different conversation. So, it’s not like we’re saying everyone’s equal, and there’s no kind of hierarchy. But there’s still always respect and dignity.”
GS: “Yeah. So, the second idea that I think is helpful when we’re talking about raising future adults, is the idea of social capital. And so, social capital is this social currency that we exchange in human interaction. And it’s very closely connected to interdependence, but it highlights. It’s about relationships.
So, you and I now know each other. We’ve spent some time talking, both on our podcast and before and after. And so, we’ve got the beginning of a nice social bank account with each other. So, if I call you and say, ‘Lilach, I need some help. I’m running this webinar, I think your audience would really like it. Here’s what it’s about, and here’s how it’s going to be of value to you,’ you are more likely to say, ‘Yes, let’s do it’, than if somebody that you have never met sends you the exact same message, right? So, I now have social capital with you, and you have it with me. Which means that in our future interactions, if one of us needs something, in some way needs an opportunity, then we’re likely to help each other. What we know from some research is that people with disabilities have less than one-fifth the number of significant relationships compared to people without disabilities.
So, what does this mean? It means that the reference letter that helps you get into university, a phone call from somebody who can lend you a lawn mower or a cup of sugar, or drive you to the hospital for an important test, or the person that helps you get a job… There’s very little actually good in our lives that has happened strictly because of something intrinsic to us. Most of the good stuff we get help with from people who have some string of connection, a social connection with us.
So, when we’re thinking about raising adults who experience their life as good and positive, thinking right from when they’re really young about our own social capital, and how we live in community, and also thinking about our kids’ social capital, is immensely powerful. Particularly if your child is going to need ongoing additional support in any capacity, then the more people that they have in their life that care about them, even almost superficially, that just have a social bank account that has some positive inputs in it, the more likely they are to be successful and to have access to those good things in life that are almost always mediated by the people who are willing to help us out, who we interact with.”
LS: “Yeah, someone who will bring you some soup when you’re sick.”
LS: “I think I heard it on your podcast and your recent episode about Coronavirus, about being the sole care provider and what happens if you get sick and your child only has you as the dependent? What if they get sick?”
LS: “Right? That was you, wasn’t it?”
GS: “Yeah, yeah. That was me, definitely.”
LS: “I’m gonna link that episode as well.”
GS: “Yeah. So, we often are thinking about our kids as kids that need stuff. I don’t think we always think about this negatively, but we’re advocating for what they need, you know, we’re trying to get them what they need. But, you know, think about the power of thinking about the people who live on your block or on the floor of your apartment building or who, I don’t know, go to the same grocery store. It depends on where you live and what your community structure is like, think about how powerful it would be to think about what’s lovely about your child. And who needs that in their life. You know, your child could be the child that is walking the dog of the person who’s getting to a point that where they’re elderly, and it’s hard to do, or who shovels the snow or who brings in the mail or who drops off a card on special occasions. And that’s social capital, just like a good financial investment that’s doing well, it grows with compound interest. And so, we can help our kids to be really well supported and embedded in a healthy and good community later in life by helping them to be contributors early in life and throughout.”
LS: “Yes, and you’re talking about IRL (In Real Life), human to human, in person interactions, because I think as much as the internet is amazing and has done so much for community, it also shouldn’t come at the expense of who do you know, in person who can literally bring you a cup of soup?”
GS: “Yeah, I think that that’s absolutely true. And there are things that we can be doing right now if our lives are shut down from in real life interaction for sure. Like it doesn’t stop that possibility of contribution. In fact, I think right now, and hopefully by the time this podcast airs, none of us are going to be thinking about this anymore.”
GS: “That’s my fantasy, and my hope. But, you know, I’m presuming that there is still some effect from closures. I think right now as parents, we’re nervous sometimes about reaching out, you know, we’re worried and fearful of the rejection, of the funny looks, or the comments or the cold shoulders. But I think right now there’s actually a great opportunity that our kids will be received with a yes and a thank you, because people are feeling the isolation. If there’s an opportunity to reach out to somebody even in really small ways, I think our kids have an even better chance right now of being received well.”
LS: “Yes. And I think it also goes back to what your goals are and when you have a clear goal. We talked about this on your show about the FIG method, and how when we know our goals, we know what we are hoping for and what we’re trying to achieve. That gives us a lot of clarity in what to do. So, I love that your whole outlook is about having this big…”
LS: “A big vision. And something to strive for where it’s, you come out of the day to day and the semester to semester, your year of school services, or you know, yearly appointments or things that are happening every day, every month, and saying, what about this life? How does our life look like? And evaluating that.”
GS: “Yeah. And speaking about your FIG method, you know, and what you’re saying about every semester in this sort of iterative life we have. If you know what your vision is in the long term, then some of those school placement decisions, for example, or IEP (Individualized Education Program), I’m not sure, here, it’s individualized education plans, but I know they get called different things in different places. But all those kinds of decisions become a lot easier, in some circumstances, because you know that your goals for this semester or this school year or this doctor or therapist appointment is in service to something else, so, it gets easier to kind of wade through the swamp sometimes. It’s very difficult sometimes to figure out what is in your best interest. But if you know where you’re headed, in my experience and the experience of other parents that I’ve spoken with, it gets so much easier to just recognize the stuff that’s just a distraction, essentially, from what is most important. I think having that big vision is really, really critical.
And the third idea that I think is helpful if we’re thinking about raising future adults is social construct of social roles and valued social roles. So, we talked about social capital and our interactions, most of our human interactions happen because of our social roles. So, if you are a parent or a teacher or a principal or a student, then you get to walk into a school or perhaps a delivery person. Those are all roles. If you are just some random dude walking down the street, you don’t get to go into the class. There is no role there for you, right? It’s not appropriate. There’s no context. What a social role is, it can actually be broken down into chunks that you can address. So, thinking about what is a friend? Or let’s use student, it’s actually more straightforward. Parents can think about their kid and their kid’s’ educational context, whatever that is. What is a student? What do they look like? How do they spend their time? How do they measure whether or not they truly belong?
These are all things that, we’re not trying to shove every kid into a mold. It’s not like that because there’s a huge variation on what’s expected and the role of student but you can actually help your child to belong and to be seen as a student with great potential and a learner by thinking about what the social role is. And you can also think about what are the typical social roles of a young adult. They might still be a learner, they might still be a student, you know, in post secondary kinds of education or other kinds of learning environments. They might be a tenant for the first time, you know, renting their first apartment and be a tenant. They’re likely to have a lot of friendship roles. Their family roles will have changed. What it means to be a son or a daughter as an adult child is different from what it means when the person is five or six, right?
So, you can think about where you’re heading and then think, well, if these are the kinds of social roles that my child is going to have as an early adult, what do they need now? What are the kinds of opportunities five years earlier that they’re going to need to have? What did I have, now looking back on my own life and the life of the people that I know? What kinds of things happened at different stages in our lives, that helped us to be ready for the social roles that typically allow us to build social capital and build the good things in life?”
LS: “Yeah, like maybe having a first job as a teenager, like you said, just by mowing the lawn or just being of help in the community.”
GS: “Yeah, yeah, exactly. And then, we don’t get many good things in life outside of a social role. In fact, I would argue there are none. So, you know, in order to get a paycheck, you need to be an employee or a citizen, if you have some sort of social safety net, right? But you don’t get a paycheck or you don’t get income without a social role that has that as one of the benefits. You don’t get to hang out with a bunch of other really cool, fun people who know you really well and have snacks and maybe a beer in a bar, if you aren’t in the role of friend, right? Those things come, I mean, maybe those things are not considered to be good things for every parent is their thinking. But do you know what I mean? It doesn’t really matter what you can imagine is a good thing in life. You get access to it based on your social roles.”
LS: “This is a very interesting social construct. I don’t think I’ve ever heard of this before, like in this context. But what about, you know, just having the role of human that you exist, that you are a person? Does that count?”
LS: “Because breaking down roles means that it’s exclusive to other things.”
GS: “It is exclusive to other things. That’s one of the important reasons to think about social roles. I don’t think being a human as a role. That’s more of a designation, although people with disabilities also often get cast out of the role of being fully human. So, that’s a whole other conversation. But if you think about when we’re talking about people with disabilities and their potential as adults, when you’re raising your kids, one really prominent social role that is not fully negative, but can become negative, as far as its influence on your life is the role of client.
So, all of us are clients of someone, in some agencies or organizations or institutions, right? But for most of us, the role of client is something that happens in the background when we have time to fit it in. But for people with disabilities, the role of client can become their single most dominant role. And so what comes, when your life is defined by being a client of social services in particular, then that actually comes with a whole lot of bad stuff, you know. And so you tend to have people managing you, making decisions on your behalf, often without your contribution or influence. You are seen as a taker, not a contributor. It doesn’t particularly create a happy image of the good things in life if your life is dominated by the role of client.”
LS: “And I think that’s also defined by you paying for receiving services, well, maybe even not directly you being the payer, but there is a payment transaction, a monetary transaction, as opposed to a friend to friend or family where that’s not a monetary transaction. There’s still transactions taking place. But in the client to provider relationship, there’s always going to be that element.”
GS: “Lilach, your point is so incredibly powerful, because if you imagine if your child with a disability, if their dominant role in life is client, it means that most of the people they spend time with are paid to be with them and so that is not that is, you know, that is not the kind of life we’re shooting for. And, you know, lots of us, again, are going to have many client roles in our lives where those relationships are defined by people being paid to be with us.
And it’s not a problem until it dominates our life. I probably have dozens of client roles, you know, and I’d have to pause to think about them because what I get out of those client roles is good and positive.”
LS: “You get goods and services.”
GS: “Yeah, I get goods and services and it makes my life better. But I’d have to pause to think about what they all are because it doesn’t matter that much in how I experience my life. I only experience the benefits of the goods and services in service of me having a rich life embedded in family, friends and community.”
LS: “Do you consider being a patient in that category as well?”
GS: “Absolutely, yeah. So, it’s fine to be a patient. But if you are mostly and primarily a patient, that’s not something that many of us would say, ‘Yes. When I think of the good things in life, I think about being primarily a patient.’ No, that’s not what we want.”
LS: “I remember the first time I kind of realized that there’s a major overlap between being a patient and being a client, and that those kind of connotations really overlap. When I was pregnant, and I had a very, very bad interaction with an OBGYN office, long story, but my husband was like, ‘You can fire them, you are their client. So, you can just be like, I don’t want service here anymore.’ And I was like, ‘What do you mean, they’re my doctor.’ He said, ‘No, they’re your service provider, therefore, you get service somewhere else from a better provider.’ And that just blew my mind. That was like an outside of the context that I had imagined this, you know, authoritative medical model above me. And he was just like, switch doctors.”
GS: “The difference being that for many, many people with disabilities, firing their provider is not an option because the consequences of that can be immediately devastating if they don’t have the supports that they need. And there are often no better alternatives.”
GS: “Of course, not every person with a disability is going to have this experience of their life being dominated by the client or patient role. But many will if their parents haven’t created a positive vision of an alternative. Because if you look at what happens to people currently and historically, people get sluiced into services and it just carries people away. If someone is not saying, no, actually my kid belongs with their peers. You gotta figure that out. If they need supports, you gotta figure out how to provide those supports with their peers. And sometimes we’re going to delve into, with the patient example, sometimes we’re going to go to the hospital, everyone there is a patient. That’s fine but we’re going to keep our vision embedded in a rich and positive, contributing life in community.”
LS: “Also, I think asking the question of the possibility, not just of friend relationships but also romantic relationships for the future which I think is on a lot of people’s question lists. Will my child be able to navigate that? Because that whole thing is complicated for everybody. Relationships and sexuality, and all the things that come with growing up and becoming an adult. What are some of the challenges that we see in this community building, I don’t know if capacity is the right word. That’s not the right word, but opportunity maybe.”
GS: “Opportunity and relationship competency. If you think about your child as an adult and in a romantic relationship, one of the things that’s really common for kids with disabilities of all types, is a deprivation of experience. If parents aren’t thinking that their child might have a romantic relationship, then when they’re six, they are maybe not taught, I’m making these ages up, they’re not talking about your body, your choice necessarily. And when they are twelve, they’re not necessarily talking about sexuality and reproduction. There are all these things that we typically do within the context of our own family values, culture, community, all of those things changes from family to family. But we all have, and some people just don’t deal with it at all, which is also a choice, but we all have to make choices about how we are going to prepare our kids for healthy adult relationships. Or at least we think we are. Hahahaha.
For kids with disabilities, often it’s not even a possibility so it never gets covered. If it’s a possibility, then we can start thinking about what kinds of opportunities do our kids need. We can be including that in the way that we are raising them now.”
LS: “To give them some protection and resilience and to be able to know and recognize when something is not right, as I think our population is vulnerable to abuse at much higher rates, so it’s something very important.”
LS: “And the other thing I’m kind of just reflecting on is that, I think one of the fascinating things that studying and being involved with communities that are really exploring disability, is that it makes us have to calm down and say what are our values and what are our goals. Because you don’t have a choice not to. You’re gonna have to come up with the vision and then that opens a conversation for everyone around us. I think even when you mentioned, being in proximity to your sister, growing up the way your mom was raising you guys, that made you have to be aware of a lot of things that children growing up in other families would never maybe have an awareness of.”
GS: “Yeah, for sure.”
LS: “So, this is very valuable for any parent listening. But hopefully our listeners are getting some good ideas and interesting, thought provoking, philosophical questions that are extremely practical.”
GS: “Excellent. I hope so. I hope so.”
LS: “So, those are the three, let’s say them again.”
GS: “So, the three things that I suggested that parents think about if they are thinking about raising kids to be future adults is: The idea of interdependence as opposed to independence, social capital, and valued social roles.”
LS: “Excellent. Those are three important frameworks to be looking at so that our kids can have good things in life. I love that. It’s so positive. It’s aspirational and I think that’s a good place to be.”
GS: “Yeah. Well, when we’re thinking about parenting, everything we do is really in service of our aspirations. So, it just makes sense that we would have the same approach to our kids with disabilities.”
LS: “And to look at our values and how we can help our children to develop a positive vision for their life also. And not just to only do this for them but to show them how they can then do this for themselves.
My last question for you is about ideas and practical tips for how parents can actually create opportunities for their children to have those friendships, to build up their social capital. What are the things that you can do at different ages and different environments to help foster that? I know you’ve given some examples already but if you just want to end off with some more ideas.”
GS: “Sure. I have a resource for people on thinking about creating a vision for their children. People can find that at goodthingsinlife.org/2020. It was created for the year 2020 and I think that people might get a beginning sense of that from that resource. Social roles is kind of the thing to focus on. Because when you start breaking down social roles, it gives you really some highly actionable ideas around what people can do to help build interpersonal identification between their kids and other kids. They can think about what’s some possibilities for success might be around constructing social opportunities for their kids. But really what you are looking to, is how does this happen usually? All of these ideas are really just providing a framework for people to go back and think about, how does this happen in people’s lives?
One of the things, for example, that is Janet Klees talks about this if people are scrolling through my podcast episodes or I can give you the link to this if you want Lilach. Janet Klees talks about building a context for a relationship. I think maybe that’s what you’re asking, at least in part. Janet says, ‘First you have to be in the same space as people. People are not going to make friends if they are not going to spend time with other people. You can’t just be there once. You have to be there over and over again. You have to be there regularly and predictably.’ So, we can think about for our kids, where are the places that other kids come together over and over and predictably? Because if that’s not happening, it’s very unlikely that we’re going to develop a relationship, right?
And then we have to think about the context for that coming together. So, if you are bringing kids together in the same space, regularly and predictably, but one child is going with the expectation that they’re going to play floor hockey and the other child is going with the expectation that they’re going to play trombone, so if there’s no reason for them to interact with each other in a way that they understand, they’re probably not going to connect. There needs to be a context of some kind. The context could be playing at the park at the end of your street or your neighborhood. The context could be an art class, or floor hockey, or trombone lessons or whatever. There needs to be some context. You can’t just show up without a reason for being there that the other kids will recognize as valid.
Just like I was saying about school. Only certain people can come to the school and walk in and be welcomed. If you are just some random dude off the street, you don’t get to do that. And in the same way, if your kid has no context for being in a place regularly and predictably, it’s probably not going to work very well. The context needs to be highly valued. It needs to be relevant and good in the eyes of the people that your kid might make friends with.”
LS: “So, not the dentist waiting room. Hahahaha. Because there might all be kids who are there predictably like I don’t know, all the kids getting braces all at the same time or something. Maybe. But not pleasant.”
GS: “It’s true. Pleasant helps, particularly if you are trying to break down barriers between kids. Then pleasant experiences, places where your child is likely to be successful in their social interactions and be seen as a pleasant addition, is more likely to lead to friendship than something that stresses your child out and where they are likely to not be their best self.
The last thing that I was going to say, is highlighting things that people have in common is also a really powerful way to encourage friendships. So, actually those pubescent kids who are all forced to sit in the orthodontist waiting room because they’re all getting braces at the same time, might be something that they will bond over. But as much as we value and appreciate and need and depend on diversity, we actually connect over sameness. The sameness doesn’t have to be the same kinds of things that tend to divide our society. It can be little things like my mouth hurts too. I’ve got braces, you’ve got braces. My mouth hurts too. Kids can be dramatically different otherwise but there has to be some reason that they see themselves as having something in common. Sometimes parents are going to have to highlight that for their own child and perhaps for the other children so that the kids have a reason to connect over a commonality.”
LS: And we have role to play in that.”
GS: “Yeah. Sometimes if the child’s communication barriers, for example, are still significant and they can’t communicate very effectively themselves, then absolutely the parents can take an active role in helping their child and the potential friends to see and find those commonalities.”
LS: “And I think this circles back to what we spoke about in the beginning, which is that children with the same diagnosis or who have similar special needs, might have nothing else in common besides for that. They might have very different needs and very different experiences of that diagnosis.
We talk about that in hearing loss a lot because there are so many different severities in hearing loss. Someone with mild hearing loss and someone with a profound hearing loss, have two very different experiences, two different treatment plans, two different environments that they need for education. And even though an audiologist might see both of them, they might have absolutely nothing else in common based on that. They both have hearing loss but it can be a very different kind of hearing loss.”
GS: “Yeah, that’s a whole other episode thinking about how we group kids and the potential positives and the dangers.”
LS: “I’m so, so grateful for this conversation. I learned a lot. A lot of new vocabulary for me and I hope for some of you listeners. Genia, if people want to come and find you, they go to the good things in life podcast and if they want to come find you they can visit at goodthingsinlife.org.
Thank you so, so much.”
GS: “Thank you. This was a great conversation.”