#085 – What matters gets counted – with Samantha Noyek, Claire Davies, and Nora Fayed

#085 – What matters gets counted – with Samantha Noyek, Claire Davies, and Nora Fayed

Have you ever been in a conversation where you realized that your assumptions – which seem obvious – are not the assumptions the other person is working with?

In this episode, I’m talking with Samantha Noyek, Claire Davies, and Nora Fayed about the importance of researching the obvious, the idea of quality of life as it relates to kids with significant disabilities, and building a dictionary of our kids unique communication styles.

In Nora’s words: “We’re talking about involving these children in the world when society has not even thought to even consider them.”

We cover the all-too-familiar experience of parents being told their child is doomed to a “low quality of life”, a phrase which leaves out most things that actually define quality of life. We talk about the universality of emotions, and the individuality of communication, and how all those things can be shared (what if we could create a dictionary of communication for our non-verbal kids?). And we explore the importance of researching the blatantly obvious so that we can shift policy and practice in positive ways.

It seems wild to think that we need to have established research to demonstrate that kids with disabilities have typical feelings that are influenced by typical things so that they don’t get denied access to healthcare and social services, but that’s still an unfortunate reality. But luckily, we have some smart people working on this, and other interesting and promising work.

Listen here to learn more.

Samantha Noyek is a PhD candidate at Queens University in Kingston, Ontario researching the indicators and influencers of the emotional wellbeing of kids and youth aged five to 25 with high levels of physical or speech/communication impairment.

Claire Davies works in Mechanical and Material Engineering, also at Queens University, where she works with families to design individualized devices to help kids with different abilities. And good news – she’s looking for families to work with!

Dr. Nora Fayed works in the School of Rehabilitation Therapy at Queens University. She is an occupational therapist whose area of interest is the measurement and study of quality of life for children with disabilities.

You can listen to this podcast episode on iTunes or Spotify.

Check out Sam’s research here.

Transcript

Genia:
Welcome to the Good Things in Life podcast. I’m your host, Genia Stephen. Today, I’m talking with Samantha Noyek, Claire Davies, and Nora Fayed about the idea of quality of life as it relates to kids with significant disabilities. Now, the three of us, the four of us, excuse me, have been trying to get this podcast recording started, but we’re doing this in the middle of the pandemic and we’ve got parents leaving and dogs barking and tech issues to resolve. And so we are now all very good friends because we’ve been trying to figure this out for quite some time now. And I’m really glad to welcome the three of you. I wonder if we could just start by having you introduce yourselves, talk about the work that you do and your relationship with kids with disabilities and their families. Sam, why don’t we start with you?

Sam:
Sure. Thank you so much. So I’m Sam and I’m a PhD candidate at Queens University in Kingston, Ontario, Canada. And we have with us, my two supervisors as well today. So thank you, Claire and Nora for joining us. And my research is focused on children and youth. So, sort of the focus are kids and youth between five and 25 years old with high levels of impairment, both physically and speech or communication. And I’m interested to understand the indicators and influencers of their emotional wellbeing. So that’s sort of my focus and I can pass it on to the next person for your introduction.

Genia:
Can I just ask for clarification first?

Sam:
Sure. Yes, please.

Genia:
So the influencers and indicators, can you repeat that sentence for me?

Sam:
Sure. So I’m interested to understand the influencers of children and youth, their emotional well-being. So what makes them let’s say feel happy or sad or any emotions in between and as well, the indicators. So although individuals in general will feel similar emotions, they may express those in different ways. So what are those indicators as to how we know when someone’s feeling happy or sad or stressed or in pain and all of those emotions.

Genia:
Okay.

Sam:
Does that help under explain a little bit?

Genia:
Yes. Yes, that’s much better. Thanks.

Claire:
So I’m Claire Davies and I work at Mechanical and Materials Engineering at Queens University. And my primary interest resulted from some work that I did at Holland Bloorview kids many, many years ago as a volunteer. And so I used to volunteer there every Friday night and loved it. I worked with a lot of different kids with a lot of different abilities, and I actually went into engineering to design devices to help kids with different abilities. And so that is my primary area of research. And I love to be participative in whatever way I can with different kids with a variety of different abilities.

Genia:
And just for clarification, Holland Bloorview is a children’s rehab center here in Ontario, Canada. And so I got to say, Claire, we need more people like you, doing the work that you’re doing because most of what’s available in adopted department, frankly sucks. And is way overpriced and way under functional. So thank you for doing what you’re doing.

Claire:
That’s one of the things I’d also like to mention is that one of the things we love to do is co-design and make sure that the end user, the children, the families, the caregivers, are all involved in the design process. So I actually teach a course where we have occupational therapists and engineering students in their undergraduate degrees working together to design devices. So that’s another way in which I’d love to have people involved if they’d like to, especially nowadays with the pandemic and the zoom, we’re always looking for participants that we can design for. We usually, we’re only at third year level engineering design, but we are definitely looking for, for participants who would like to help out in that area.

Sam:
Excellent.

Genia:
Well, pick me. Well, we’ll talk about that later. And, and Nora?

Nora:
My name is dr. Nora Fayed. I work in the School of Rehabilitation Therapy at Queens University. My background is occupational therapy and still a registered occupational therapist. And my area of interest is quality of life for children with disabilities. And with a special interest in how we go about measuring that and how we go about defining it in order to measure it especially measuring other aspects that are related to quality of life, which are often things that are very important, but not easy to see and therefore not easy to measure. My relationship with children with disabilities and people disabilities is a long one. So, I think I’ll just focus on where I’m at right now. And where I’m at right now is really trying to increase the level of partnership and integration of children with disabilities in their families, into my research program and into my perspective as a researcher.

Genia:
Great, thanks. So, this interview, this conversation came after, well, a while of trying to get coordinated. But the first contact between the four of us was I believe when Sam reached out to me to ask whether or not I’d be interested in sharing her call for research participants for her research. And when she first explained what the research was about, I was frankly, a little bit suspicious and nervous because most of the time, when I hear about, you know, when I’m hearing about research around kids’ quality of life, it usually is not particularly positive. And so, and also, I think research often gets a little bit skewed, right? Like we, we miss research on quality of life, misses a lot of the sort of confounding variables and the vulnerabilities that kind of undermine the quality of the findings. And it all ends up just contributing to this narrative around significant disability equaling poor quality of life. And I wonder, Sam, if you could talk a little bit about, like, how, how does your, the purpose of your research or the results of your research work against that tide?

Sam:
Yeah. So I actually want to thank you for, as weird as it sounds, but thank you for your suspicion to begin with, because it helped me sort of channel that research, even though you have a certain objective as to your purpose as your research. It sometimes when you’re sharing it with others, it may be related in a way that isn’t, as it’s not received or accepted in the way that you are hoping it to. So I appreciate that because, as a first note, one of my outcomes now is to try and actually allow families and children and parents to be able to express that the quality of life or the emotional well-being of children with significant disability is often positive. And I’ve actually been able to see that now and have conversations where there’s parents saying my child’s really happy and they have a great life.

Sam:
And from someone who I’ve volunteered in capacities with children disabilities and with different families, but I’ve never had conversations like these, and I’m getting my own new perspective that I want others to be able to understand as well. So that’s one aspect of it that I hope that that research builds on exactly what you’re saying, that there are the quality of life needs to be seen more in a positive light, and especially in the literature and in the research capacity that it should be relayed to others. Additionally, I guess I hope that the knowledge that’s gained from this research is that it adds to the fact that we can’t just focus on medical assessment for quality of life, and that we can be able to understand, the different relationships and the insight that families and children have with their primary guardians and other people in their life and how that’s super important information and then we can’t just focus on quality of life and sort of a medical focus. I could ramble on for hours about what I hope to gain from the research. So I just kind of wanted to check in with you to see if I’m answering the question the way that you’re kind of hoping. So, I think you’re on mute though. I’m sorry. Thank you.

Genia:
There you go. That was exactly, exactly one of the things that I predicted would happen at my end. So yes, you are answering the question. And one of the things that you said, you’ve said to me previously, though, that you, you didn’t just mention, is that something around, you know, what gets measured gets counted? And I hadn’t, and I’m still thinking a little bit about that, you know, but I think your point at the time when we were having that conversation was that, you know, the voices of kids and the, you know, this figuring out how do we understand kids who communicate perhaps very differently just doesn’t show up anywhere. And it doesn’t show up because it’s not being, you know, it’s not being counted, it’s not being measured. And so it can’t show up as a significant influencer of any other work that is being done.

Genia:
And so by trying to understand, not necessarily the influencers for how kids are feeling, but the indicators, you know, if they happen to be different, if kids have significant communication challenges. You know, if there’s a body of literature out there that talks about how kids communicate, how kids communicate about what they’re feeling then that can be incorporated into, you know, well into policy, into further research, into, you know, all kinds of, all kinds of different things. And I, and I appreciate, I do really appreciate that contribution. One of the things that I’m curious about, and I’m interested in hearing from Claire and Nora about this as well, is around the influencers of kids’ emotions. And whether there’s any reason to think that the influencers on the emotions of kids with significant disabilities would be any different than the influencers on the emotions of kids without disabilities or without significant disabilities. Nora?

Nora:
I think that’s a phenomenal question. And I think through what Sam is studying, she’ll be able to speak to that probably better than I will or Claire will. And I have some suspicions as to the answer to that question. But before we go there, there’s something about quality of life that I would really like to audience with regards to this. Cause I think it’s a really contentious issue and I didn’t even realize how contentious an issue it was until I was at a research panel at a round table with some families trying to talk about my research on quality of life and, and felt some pushback from families. And I walked away from that table thinking why, why are they having a problem with quality of life?

Nora:
Isn’t that a really good thing to study? Don’t we all want to make kids’ lives better. And I proceeded to share this with a physiatrist who herself has a disability, a person who I really respect. And she basically shared with me that in a clinical care often neonatologists or other specialists when children are very young or families first learn about children’s disabilities that are trying to make a life and death decisions about medical treatments for their children, they’re often told that their child will have a poor quality of life. And as a quality of life researcher, that really shocked me because it’s actually kind of contrary to the evidence. And so I just would like to put out there because our families are going to be listening that there’s a long, complicated history at how that came to be, how that came to be that clinicians use those terms, and how it came to be that there was a perception that children with disabilities have a poor quality of life.

Nora:
Because decades of research on quality of life actually demonstrate that children with disabilities do not have poor quality of life than other children when you account for the things that make people’s lives good being present or not present. So, there’s a couple issues there. The first thing is what do people mean when they say quality of life? My entire PhD thesis was focused on that. And what I found in reviewing the literature is that when medical audiences are studying quality of life, they’re studying kind of like a very utilitarian approach. They’re looking at, are kids walking, are they moving or physically able to do the things that other kids are doing? Are they able to “function” in the same way that their non-disabled peers might be functioning. And that’s really interesting because the history of quality of life research is much, much longer than that and more broadly defined in terms of how happy are you with your life?

Nora:
How satisfied are you with your life? What do you, what are you thinking about what you’ve achieved in life so far and what you want to achieve? So when I study quality of life, that’s what I’m studying. I’m studying that, how you’re feeling about your life and what are you perceiving. And when we look, take a closer look and we really take apart the research and all of the measurement tools and the definitions, and we really hone in on what it means to have a good life, and we stay true to that definition. It turns out kids with disabilities actually are fearing just like other kids in the population in that regard. So I wanted to share that with families that this perception in the medical community that having a disability, even a very high levels of disability or very high levels of impairment does not dictate a poorer life outcome. Other things do, which we can talk about.

Genia:
I imagine that the families listening to this podcast probably are not really super clear about that. And probably actually have experienced in some capacity or another quality of life being used as a weapon as opposed to, you know, you were saying isn’t pursuing good quality of life, like a great idea? You know, isn’t that a really good thing? And I think that probably most people listening have had the experience of it not being sort of future paced as a let’s think about how we can support kids to have good quality of life, but as a weapon to withholds, to withhold, to deny, and to oppress. So I think that what’s interesting for me is that when I have conversations with clinicians, despite the fact that they have better access given their education and their profession, clinicians have a harder time getting that than families do. And what’s, and this is a real, like, it’s a systemic, massive systemic issue despite decades of research that shows us, in fact, the NHS in Britain, they’re funding approval system for new treatments is based on quality of life assessments by people who don’t have the condition. So they do these, I can’t remember the name of the, the, the name of the, but it’s public opinion.

Sam:
I know. Yes, it’s called the health economic scale.

Genia:
Yes.

Sam:
Yes. I’m familiar with those. And I wrote about that in the introduction and the conclusion of my thesis, the ethics of approving, or conducting health economics analyses for people with disabilities based on health utilities that were derived from the general population and the ethics and the pitfalls involved in that night. I agree with any family that points out the ethical images and the discriminatory nature of systematizing quality of life in such a way. And again, I would challenge that they are actually measuring quality of life. What they’re doing is they’re putting value on indicators that people in the general population value for people with disabilities, whether they value those things or not.

Genia:
Yeah. Yeah. For sure. Claire, do you have anything to add before?

Claire:
I don’t think that there’s anything specific. I mean, as I’m listening to this, one thing that does come to mind is the fact that we see within the typical population, the disparity in what a mother says, versus what a child says about how they feel about something. I’m not saying quality of life, I’m just saying their feelings towards something. And I think that is a lot of what Sam’s research is trying to get at is what are those actual feelings of the child? Is it the same as what the parents are reporting, or are those feelings different for that child? And they may be just marginally different. It may be, rather than the parent says, this child is happy or seems happy right now, the child might be ecstatic and be really excited. So I think part of what I’d like to know through stamps research is actually what does the child feel? And how does that affect their quality of life from their perceived, from their perception? Right. I think that’s, that’s a lot of it too.

Genia:
So, so, but the assessing what kids are actually feeling, that’s the, that’s the, how the kids indicate it. It’s not the, what are the influencers? So my question remains around there’s an underlying assumption that the influencers of childhood emotions would be different for child children with disabilities versus children without disabilities.

Claire:
Yeah. I’m not sure that they necessarily are. I mean, you’ve got your friends, you’ve got your mental health, you’ve got all those indicators that I would think fall across the spectrum. I don’t necessarily think that there are specific influences that are different.

Genia:
But Sam you’re looking at whether or not there are, right. Like, you’re looking, you said, you’re looking at these two aspects, the influencers of childhood emotions and the indicators of them. And so like, why are you looking at the why? The sounds, I can hear it in my voice, it sounds accusatory, which is not what I mean at all or not how I’m intending to come across. But why look at the influencers? Like sometimes in research, this just blows my mind the older I get, and you know, as I move through my own career. Sometimes you have to do research because the blatantly obvious doesn’t exist as a legitimate, you know, body of evidence, unless somebody has like stamped it and published it. So the answer to this question might be, of course, kids feel, you know, are going to be, you know, influences are going to be the good things in life, right? Friends, stability, you know, all of those kinds of, you know, health opportunity. So maybe the answer to this question is just I’m measuring it so I can publish it so that we can acknowledge that, you know, generally the good things in life are universal.

Sam:
Exactly.

Genia:
But [inaudible] you know, maybe there’s a different reason to question whether or not kids with disabilities and kids without disabilities have different influencers.

Sam:
Yeah. And I think that even looking at the literature and seeing what, rather than even quality of life, but just emotions in general and what makes a child’s feel happy or sad, it’s not identified for this specific population. And it’s just, if it hasn’t been done before, I want to seek and make sure whether it is exactly the same for typically developing children, it’s not very clear in the literature and it’s not clear in practice and it’s not clear in general. So if I can just be able to gain some insight and see if it’s possible to define it better than I think that adds something. So,

Genia:
And I wonder, I’m not sure who is sort of best suited to answer this question, but I know I have just said this. I just made this statement that if it’s not in the literature, somehow it doesn’t exist as a reality, regardless of how ridiculously obvious, you know, the observation of human experiences. But I wonder if one of you could talk about how an absence in research literature translates, or potentially translates into clinical practice or policy development and how that actually can influence people’s lives.

Claire:
So we’ve actually seen it throughout this pandemic. Masks are not useful. Masks are not useful, don’t bother wearing them. It’s not very important. Then the scientific evidence starts coming out that yes, you are getting this transfer of droplets as the time goes on. And now all of a sudden it’s a requirement that everybody wears a mask in certain vicinities. And so I think they’ve, we’ve seen that shift as soon as the academic literature provides evidence in one direction, then we can provide policy to support it. And I think that’s effectively what’s happening here is we’d like to get that evidence to provide to healthcare workers, clinicians, policy advisors, government, funders, those sorts of people, and say, there is evidence, and this is how we know what’s important and why it’s important and how we can now further fund it.

Genia:
I got to say it like, I’ve been in the disability world, basically my whole life. I’ve got a younger sister with a disability. And lots of stuff is so familiar that it kind of rolls off my back a little bit. Or maybe I’ve just built up, you know, a tougher, outer shell or something. And I think that’s probably more accurate. But every once in a while, some of this stuff just like stabs me and the fact that we need to establish in the research the idea that kids with disabilities have typical feelings that are influenced by typical things so that they don’t get denied access to healthcare or denied access to social services, or, you know, that this idea that they are so other needs to be undermine in the research just makes me not want to ever leave my house.

Nora:
I listened to a lot of podcasts. And this is one of them, Genia. And the other day, while I was doing my grocery shopping, I was listening to someone who creates a television shows, talking about how we know about the, the amount of difficulty and hardship and injustice there is in the world. And how so many of us are just working very hard every day to contribute to something that is improving it when it shouldn’t even be there in the first place. And I think that that’s what these conversations are about. But I would also say, point number one is that I don’t, when I look at Sam’s research, I don’t think that the main thrust of the research is to prove that these children have emotions or that they are, those emotions are influenced by similar things as other kids. I think the thrust of the research is around making it very clear to those who don’t know whether it’s a PSW who comes into the home, whether it’s a new parent who doesn’t know how to trust the feelings that they’re seeing, or the indicators that they’re getting from their child.

Nora:
Just making it clear that you know, that these are validly things that we see across children. And so your perceptions of that little twitch in the corner of your child’s eye and the glint and the little grunt, that sounds just as just tiny bit different than the other grunt. And you don’t know why. And when you go to the doctor and say, doctor, I think my child might be in pain. And he says, or she says, well, why do you say that? And you say, well, because the grunt is different or that like, he or she did something very slight or small in a different way. We would like to kind of democratize and put that above ground, those experiences. That’s what I kind of see the thrust is behind her research. It’s around creating the dictionary for those who are ignorant of these children who have not interacted with them around how to translate.

Nora:
They have a language. And so let’s start writing the dictionary for that language so no one can deny that the language exists. And so I would say that that’s what I see as kind of the thrust. And then part of writing that dictionary is kind of is just describing the situations around it, like what’s causing it. So how do we know that that’s really a chuckle? Well, because he loves his brother and when his brother gets home from school, you know, that’s when we see it. So I see Sam’s research as more, less around justifying whether the children have emotions or not, but making it clear, or at least taking a step to making it clear to the world that this is a language. And the children are talking to us, they’re speaking to us. And we can’t deny their language. We have to find their language, and we have to trust those who are translating it.

Genia:
Sam?

Sam:
I just wanted to add too, is that the dictionary is going to be really different, obviously for each chil. It’s not going to be a universal dictionary, but being able to understand that we have to have conversations and understand the child through the relationships and the people involved in their life, and that it’s going to look different. Happiness is going to look different for one child as it is for another. And being able to actually take the time to understand the child’s per like individually and figure out what that dictionary can look like for each of them.

Genia:
Are you frustrated because it’s just really hard to know for sure what your son or daughter with a disability is trying to say, or trying to communicate, what their preferences are, and maybe what their decisions might be on some issues around their life? One great place to start is our free expert masterclass called AAC as a tool for self determination and supported decision-making: how to stop guessing what people want. The masterclass is by Erin Sheldon. And you can access that by going to goodthingsinlife.org/stop_guessing.

Genia:
So this is starting to take shape for me in a more significant way. So this is helpful and I appreciate this. I get what you’re saying, firstly, thanks for just that acknowledgement that of course like the dictionary is not going to be like a, you know, it’s not going to be a dictionary, like an English dictionary where it’s codified and, you know, the same across and people can, we can create new grammar police for kids around, you know, how they’re expressing themselves. But I do understand and appreciate the value of this idea of sort of democratizing forms of communication. And you know, it makes me think of, it makes me think of sort of, just need a second to collect my thought. It makes me think of, you know, just the process that happens in different fields around validating authoritative knowledge. And it sounds like that’s what we’re talking about here, right. Is sort of putting on the table and making transparent and valid forms of communication so that they’re not undermined or dismissed as being unreliable or insignificant. So, I appreciate that.

Nora:
So I wanted to thank you Genia for pointing that out in that, I think every one of us in this conversation and the conversations we represent, whether it’s researcher or family member or activists, we all kind of have our roles to play. And as a researcher, I know that my role is to come into a research question with kind of like an open mind, even though I have my kind of own biases and my own beliefs. And that’s what offers me credibility when I do present the evidence, and credibility to families like you, when I can put the evidence in your hand and you can march it over to your provider or to your policymaker in making sure that the evidence is respected.

Genia:
Right.

Nora:
So thank you for pointing that out.

Genia:
Right. So I want to, I can’t remember who said it, but I just want to loop back for a second. Well, I think it was, you, Nora said something about, you know, maybe it’s the mom who’s not trusting what they think they’re seeing or that kind of thing. And then somebody made another comment earlier. So I’m kind of circling back around to early experiences and setting how parents’ expectations or mindsets get set around their children’s quality of life. So my master’s research is on NICU experiences of parents in their interactions with healthcare providers and the environment and how that those experiences actually set the future pacing, future imagination, expectations for what’s possible for their kids. And I think, you know, if you’ve had a child that’s had any medical complexity where it’s not sort of acute and then over, right.

Genia:
You know, you need a heart valve repaired, you go in and you get the heart valve repaired. You go home, you go along your merry way. But when there’s, not to minimize that experience at all, but what I’m talking about are parents whose kids are going to have ongoing disabilities and medical complexities, and it seems to me, and it was certainly my personal experience that in the NICU, it’s a period of time when you are incredibly vulnerable and susceptible to the messages that other people give you about what’s possible. And quality of life definitely falls into that expectation. So, you know, thinking about like the, you know, all the research talks about talks about the fact that level of disability is not a good indicator of quality, experience quality of life. And yet, as we’ve already discussed, you know, functional clinical assessments are being used to talk about whether or not a child is going to have any quality of life.

Genia:
And during that period of time, I kind of feel like you can kind of set a family on a trajectory in those early days, you know, and you can definitely, parents can kind of change their path of course, and that happens all the time. But I do think what happens in those early hours and days and weeks is significant. You know, I remember just how vulnerable I was myself. So I had already had, you know, decades of experience in the disability community, you know, had significant relationships with people with disabilities, had studied and, you know, even done some teaching and facilitating around the idea of devaluation and discrimination and you know, where that comes from and unconsciousness and all this kind of stuff. And I had my son and he was in the NICU and he was maybe two weeks old at this point.

Genia:
And I don’t remember why I consented to speaking to genetics. There must have been a reason because I have a healthy suspicion of, you know, the actual clinical contributions of genetics in these times. And also the influence on people’s, like the narrative that comes along with genetics often around quality of life. But anyway, I did. I did consent to this consult. And the staff physician, the lead physician and a resident came in and they did a head to toe assessment of, you know, my sweet little baby. And they picked apart, you know, the bridge of his nose and, you know, the world’s of hair on his head and the, you know, his thumbs and is this, and is that, and all of these different things. And then they said, well, I know you work in healthcare, so I’m going to give you the healthcare provider information on this condition, the syndrome that we’re sure your son has.

Genia:
You know, obviously we can’t do it, you know, we can’t say for sure, but without testing, but we’re very sure. And so they left and I read this information and I was devastated because basically what the information communicated is that what I could expect for my son is that he would be short, fat, cancer-ridden, not very intelligent, with a crooked back, like basically he would be Quasimodo. That’s, that was his future, you know? And I called my mom and I was hysterical. Like, you know, that like ugly crying, where you can’t even get the words out and people can’t tell what’s going on. And, you know, and I was hysterical. And my mom, I was told this story before, and my mom finally got me calm enough to like, get out what, you know, what I was trying to say. And she said, “Over heaven’s sakes, Genia. I thought he was dying.” Like, you know, like pull yourself together and stop being an ass, you know?

Genia:
And I did not appreciate it in that moment because I was sure she couldn’t possibly be understanding the enormity of what was obviously going to be this very terrible life, you know. But of course she knew exactly like she was very clear and it did snap me back into the reality of like reading that material through the lens of, through the lens in which it was created, right? Wasn’t created to be really anything other than a list of complications. And the list of potentials was also based on a body of data collected from people that had been institutionalized their whole lives, which tends to lead to, you know, all kinds of health complications and, you know, and not very rich life. Anyway, it turned out, you know, I said no to testing because they said, I asked them whether or not there was actually any relevance. Like if we get this information back, is it actually going to be useful in helping, you know, him in his, in our healthcare decisions or anything else. They’re like, no, not really.

Genia:
I’m like, great, thanks so much for your visit. And that was really helpful. And so, anyway, I’m just blathering on now about my own story, but these early experiences, when you have a child like that’s in the NICU, I think are really powerful, but also all the baggage of everything that you’ve been experiencing through your whole life up until the point that you have a child is going to be brought to bear. And then how people respond to you and the expectations that are around you also, I think set parents off onto a specific trajectory. And so this very long way of circling around to the idea of all the ways that we undermine that parents trust that that eye twitch means what they think it means, you know? And then if you can’t even trust as a mom, that you are correctly reading, you know, responses from your baby. Then the idea that you would be able to wash away all of, sort of society’s low expectations for your child’s quality of life and push forward in a different way is kind of [inaudible].

Claire:
[inaudible] commenting on that. I mean, I completely see where you’re coming from, and it’s a very, very good point. And I think, I mean, part of me looks at it from what Nora said earlier is the concept of a PSW coming in or a new friend of the child. And if they can communicate immediately and be given these certain cues I mean, from the work that Sam does, hopefully we can establish other means of allowing that child to communicate with other people that they don’t know. And I think that to me has more to do with what Sam’s research is all about is actually being able to express themselves in different environments, not necessarily within that own family environment, where everybody does know them really well. I think it’s also taking it out within the community and allowing that child to communicate with other members of the community.

Genia:
So would your research Sam and fit, do you think in the, in sort of like one stepping stone on a path of, you know, supporting the idea that kids can reliably communicate even if it’s unconventional as being one justification for example, rich language access to be a AAC?

Sam:
Yeah. I think it’s really dependent on the child as to what trajectory they’ll be able to have using different AAC. And I don’t think that it can answer it just as so that yes, there’ll be able to reliably express. I hope that it will help those children who have the abilities that if they are able to one day that they can access it. But there’s just, there’s two things that I want to add to it is that I hope it also, the research provides sort of hope because a lot of the times, I actually, I shouldn’t say a lot of the times because I’m not a mother who’s ever, I’m not a mother, I’ve never been in the NICU. I’ve never had those experiences, but when I can imagine, if you’re having a grim diagnosis and you’re looking at this trajectory, that’s very medical-based, then you’re expecting a quality of life to be a certain way.

Sam:
But from different conversations I’ve had, the child can have a positive quality of life. So I hope that if people who end up reading the research, whether it be families and there are similar diagnoses that it provides sort of hope for their families and that they’re able to see that they’re, it’s not just this horrible quality of life that’s to come. As well, the other thing that I want to point out is that whether or not it’s a reliable means of expression, I also help with the research is able to do is, as we said, that others are able to understand or influence a child’s emotional well-being as well. And what I mean by that is, let’s say, there’s, this is just what comes to mind is that if there’s a child or youth who is unable to, let’s say express to others, okay.

Sam:
Let’s say, they’re not able to say answer back, “How are you?” And they can’t say, “I’m great, thank you.” But because of that, they may be neglected and they’re never asked how are you? But in reality, they’re influencers of emotional well-being of when they are happy, it’s that social connection. But if we ignore them or neglect them, because they’re unable to say, “I’m good, thanks. How are you?” But instead they have a glimmer in their eye and they enjoy that social connection, then we’re missing out. And we’re also, we’re not allowing those children to have a voice. So I’m not sure if they’ll be able to reliably express, but I still think that there’s so much that can come of this. And I hope that that was explained in a way that was understandable, but that’s kind of also what I want to add there.

Genia:
For sure. Yeah, for sure. I really appreciate that. And I, when I’m talking about reliably express, what I mean is that you can trust what the child is telling you as opposed to some sort of quantitative measurement of reliable expression. And I just, you know, as we’re talking, I’m just, one of the things that many of us have experienced as parents is the withholding of access to literacy and communication instruction based on an idea of readiness. And one of the things that I can see your research contributing to is undermining that idea of readiness. Like if you can, as Nora said, democratize, you know, the forms of communication and legitimize that, then that also can be used to support the idea that, you know, just because kids aren’t reliably expressing themselves in ways that have been previously deemed enough that, you know, they may be able to use your research as a form of advocacy for readiness. Yeah, Nora, go ahead.

Nora:
Yeah. I kind of like to weigh in as an occupational therapist now and think of how I think of this as an OT because I come from the profession of people who might be actually part of the group of people who are making those assessments around who’s eligible and who’s not eligible, and why. And I would like to point out that, I would say if we think of this long and even cry, we, I don’t want to just say Sam’s of research. I mean, the line of inquiry of trying to access these children, giving them their right to participate and be involved in communication with others. I think that’s what this is really about, right? This is about their right to be measured in clinical settings or their right to express themselves to other children or the right to be understood in their families.

Nora:
Has applications, I mean, rights have applications to every aspect of life once we have not even thought of. And as you’ve heard today, you know, I have some ideas on what the applications could be, and Claire has ideas and Sam has ideas because really we’re talking about so many things, right? We’re talking about involving these children in the world when society has not even thought to even consider them. And we all agree. I think that that’s just an unacceptable status quo. So, but as for the issue of eligibility to AAC, I think the bigger issue is that we’ve been pursuing a line of inquiry for alternative and amended of communication that has completely overlooked how some children communicate from the first place. And so, it’s not just about trying to get them access to existing forms of AAC that were never designed with them in mind.

Nora:
It’s more about broadening what AAC could be and reconsidering what communication ends from the first place. And we’ve been defining creating AAC under this underlying assumption. That’s quite abelist that assumes that communication occurs through speech and under speech occur that there’s language. And I think what we would hope that this research would demonstrate to that audience, to those developers, to those engineers, to those AAC scientists, is that you need to start looking for other signals to augment that come from, you know, you know, maybe not, you know, there’s so many complicated AAC things out there that target a very small group of kids. But all kids have emotions. All kids have happiness and sadness and fear and boredom. And that’s an, and if we can find that even when it’s not so obvious to naive viewer, then we can augment it for everybody. And then, and then we can start opening up the world. That’s based on that.

Claire:
So just following on, from what Nora said, that’s exactly it. And that’s why this collaboration is so important that we’ve got the OT, we’ve got the engineering, we’ve got the rehab sciences connection. And I think that is what’s missing from not only AAC, but all sorts of assistive technology is that we are missing engineer’s design for what they expect people to respond to. They don’t actually design with the end-users in mind and with the end-users designing with them. And that’s where the whole co-design concept comes in that I’ve been trying to push and push and push for the last 15 years, is that it’s very important that you work with that end-user in the development and the design of all the technology that you are designing.

Claire:
And so that’s why it’s really important with this new course that I’ve got is that we’ve got the OTs and the engineers collaborating right from the undergraduate perspective so that they work together. At least the engineers are in the undergrad, even though the OTs are masters students, but it means that they have to work together. They have forced to work with other people, and they have to learn a different vocabulary that they’ve never heard before. And they have to take the voice of the consumer and translate it into engineering specifications. And it’s something that they’ve never done and they’ve never had to do because most engineering courses don’t have that interdisciplinary collaboration. And I just try to instill it just at such a young age, so that in the future, maybe, maybe we’ll be able to design these technologies. So they are more usable and more effective.

Genia:
So, we’ve talked about it just in the last couple of minutes, we’ve been talking about access to language and AAC and design for assistive technologies in general. And I’m just thinking about the, you know, we’ve said that quality of life, isn’t actually about functional functional assessments. And now we’re talking about ways to increase people’s functional competencies through assistive technology. And I don’t, I don’t feel like that’s actually a conflict. There’s no dissonance there. I think mostly because I think if you kind of unpack the layers of impact, I think that mostly when you have people who are committed to involving appreciating and being in relationship with people with significant disabilities that speaks to, you know, the kind of universal good things in life for human beings. And so, and pursuit of one’s own interests and one’s own competencies and personal growth is also one of those universal good things in life for humans.

Genia:
But even if the attempts at increasing somebody’s, you know, skills or access, or, you know, competencies is ineffective, the pursuit of it itself is also one of those really positive life experiences that tends to increase our quality of life, right? Rather than the sort of being left to wallow which is so often what people with disabilities have experienced historically. So, I appreciate that. Sam, I’m wondering if you want to sort of wrap this up by talking about where your research is at right now and how people can reach out to you, if they’re interested in hearing more about your research or participating, I’m not sure whether you have all of your research participants at this point.

Sam:
Sure. Thank you so much. Right now we’re still recruiting. So if anyone’s interested in getting involved, I would love that. They can find me on Facebook or on Twitter with my name, Samantha Noyek. Or, we can also leave in the comments how else to find me, but essentially, the research itself is two phases. And the first phase of the research involves taking photos and videos of children and youth. So the primary guardian would be able to hopefully capture these impressions, how their child is able to tell us when they’re happy or sad or any other emotions. And then, I have qualitative interviews to understand those photos and videos better. And the second aspect would then be, I would interview other people who are close to the child with severe disability and understand their relationships and how they also understand the child’s emotional expressions.

Sam:
So right now, I’ve had a couple of interviews and I’m still looking for more people to get involved. And it’s all online. I’m hoping to have a diverse sample of individuals across Canada. The positive of COVID is that now I can do everything online and I can hopefully include all those who want to get involved. And I think I said this before, but children and youth between five to 25 are those who we’re interested in including. So I hope that kind of wraps it up. I, of course, am happy to provide more information if there are people who are interested and yeah, thank you so much.

Genia:
Awesome. So we’ll make sure that those links are in the show notes. And just for ease for the listeners, maybe we can create a link that’s easy to remember like goodthingsinlife.org/samsresearch, all one word. And so we’ll make sure that that link also ends up connecting people with your research application directly.

Sam:
Amazing.

Genia:
Sam, Claire, Nora, thank you so much for joining me today. I’ve really enjoyed our conversation. I’ve really enjoyed Sam thinking a little more deeply about the benefits of the research that you’re doing. And I’m grateful that you’re all doing the work that you’re doing. Thank you so much.

Sam:
Thank you.

Genia:
Thank you so much for joining us today. I really enjoyed this conversation. Really appreciated thinking about how we get our kids’ feelings, our kids’ experiences on the map so that they can be counted because what matters gets counted. Now we know that our relationships, our ability to communicate our thoughts and experiences is a key part of our emotional life. If you feel like you could use some help thinking about how to support your child, to be able to access communication, and stop guessing what they want and what they think, then access the free masterclass by Erin Sheldon. You can find it at goodthingsinlife.org/stop_guessing. Take care.

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Special thanks to SAMANTHA NOYEK, CLAIRE DAVIES, and NORA FAYED for joining me this week. Until next time!

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