The Good Things in Life: Building Inclusive Lives with Genia Stephen ~ 902

Tim Villegas:
Genia Stephen, host of the podcast Good Things In Life, wants you to know why podcasting is her medium of choice to get her message across.

Genia Stephen:
My goal really was to bring the voices and the conversations of disability thought leaders to families. Podcasting really made sense. I wanted to provide a really accessible, easy way for people to connect with my network and with people who could help parents think through devaluation, unconsciousness, how we frame our expectations for people with disabilities, and how we can move toward helping people with disabilities build rich lives full of the good things in life.

Tim Villegas:
And why the differences between the United States and Canada regarding inclusive education may not be as large as you think.

Genia Stephen:
I can speak to Ontario, where I live. Similar to the States, we have a tiered system. People can be placed in general education, but they can also be placed in segregated classrooms or schools depending on the community.

Tim Villegas:
Hey, y’all. My name is Tim Villegas, and you’re listening to the Think Inclusive Podcast presented by MCIE. This podcast exists to build bridges between families, educators, and disability rights advocates to create a shared understanding of inclusive education and what inclusion looks like in the real world. To find out more about who we are and what we do, check us out at thinkinclusive.us or on Facebook, Instagram, or Twitter. Today on the podcast, we interview Genia Stephen about why she started the Good Things In Life podcast, what some of the differences and similarities are with the educational systems in the United States and Canada, and if there is such a thing as perfect inclusion. Thank you so much for listening. And now, our interview with Genia Stephen.

Tim Villegas:
So today on the podcast, I’d like to welcome Genia Stephen, who helps kids with intellectual disabilities build inclusive lives at home, at school, and in the community. She is the founder and host of the Good Things In Life podcast and manages a community of parents of children with disabilities. Welcome to the podcast, Genia.

Genia Stephen:
Thank you so much for having me, Tim. It’s truly an honor. I’m excited to be here.

Tim Villegas:
Fantastic. Will you tell us a little bit about yourself and your advocacy work?

Genia Stephen:
Absolutely. I had the great benefit of having a younger sister with an intellectual disability and a mom who went from never having known anybody with a disability—and really being quite freaked out when my sister received her diagnosis—to surrounding herself with thought leaders and mentors in the field of disability. I was raised at the feet of giants in terms of thought leadership and grew up in a disability-positive community.

Fifteen years ago, I had my second child, and my son has disabilities and medical complexities. It was striking to me how lucky I was to start my parenting journey at such a different place than my mother had. I already had a community of people who got it, supporting me.

I’m also a midwife and have been for more than 10 years. I’ve supported well over a thousand families during their time of welcoming a new person into their family, including families who are having or suspect they might be having a child with a disability. It became very apparent and distressing to me that most of those parents were starting their journey at the same place my mom did—nowhere close to where I had started. So I started Good Things In Life to close that gap, to provide other families with the world-class disability education I benefited from—through the podcast, events, learning opportunities, courses, and memberships.

Tim Villegas:
What about podcasting? Why podcasting? Why is that the medium you chose to share your message?

Genia Stephen:
Besides the fact that I can show up in my pajamas and have laid-back conversations without anyone seeing into my disheveled world—that’s one benefit. But primarily, my goal was to bring the voices and conversations of disability thought leaders to families. Podcasting made sense. I wanted to provide an accessible, easy way for people to connect with my network and with people who could help parents think through devaluation, unconsciousness, how we frame expectations for people with disabilities, and how we can move toward helping people with disabilities build rich lives full of the good things in life. A podcast just seemed like the best fit for that.

Tim Villegas:
Has there been anything surprising that you’ve learned from interviewing your guests since you started the podcast?

Genia Stephen:
That’s an interesting question. A couple of things. The low-hanging fruit is how small this community is. The other thing that surprised me—and made me sad—is that the broader my conversations are geographically, the more I realize that while there have been tremendous improvements since I was a child, many kids are still in segregated programming, separate schools and classrooms. Lots of people have never had the opportunity to think about a different way. I didn’t expect that. I thought it had spread farther than it has, and I’m very sad that doesn’t seem to be the case.

Tim Villegas:
Let’s talk a little bit about education in Canada. What do you think is the biggest difference in how people with disabilities are educated in Canada versus the United States?

Genia Stephen:
Canada’s a big country with a lot of variety. In New Brunswick, there’s a universal policy of inclusion in general education. With a few small outliers, there are no segregated classrooms or special schools—everyone is educated together. In Ontario, where I live, we have a tiered system similar to the States. Students can be placed in general education or in segregated classrooms or schools depending on the community. There’s also a lot of variety in low-resource areas, like rural communities, where inclusive policies may be more common simply because there’s no alternative.

I think one difference is that Canada has a longer history of advocating for and succeeding with inclusive education. In the 70s and 80s, there was significant advocacy and change. But recently, it feels like there’s a turning of the tides. Parents seem convinced that “special” means “specialist” and higher quality education. We’re seeing increases in segregated education in some areas. My impression from American colleagues is that there wasn’t a critical mass shift toward general education in the first place. But the US is also a huge country, and it varies widely.

Genia Stephen:
In the 70s and 80s, there was quite a lot of advocacy for inclusion, and some very significant changes were made that influenced most areas of the country. What we’ve seen recently is what I perceive to be a turning of the tides, where parents have been convinced that “special” means “specialist” and implies a higher quality education for their children.

There doesn’t seem to be the same opportunity—maybe parents aren’t connected to the same organizations, or I’m not sure what’s going on—but we’re seeing increases in separate and segregated education in some areas. My impression from speaking to American colleagues is that there wasn’t a critical mass change toward general education in the first place. Like Canada, the US is a huge country, and it’s very different depending on where you are. So I’m not confident that any of that is factual, but it’s my impression.

Tim Villegas:
Do you have some really great examples of inclusive education where you are, or maybe ones that you’ve heard of?

Genia Stephen:
Yeah. One important thing to know is that even when inclusion isn’t done perfectly—which is everywhere, always, because perfect inclusion is aspirational—it still results in better outcomes than segregated special education. I think about all the people I grew up with who experienced less-than-ideal inclusion. Teachers were stumbling around trying to figure it out.

I had a friend named Becky Till. She’s passed away now. Becky was one of the first people my age—she was a year older than me—to enter a general education classroom in her community. Her parents had to go through legal battles to make it happen. At that time, teachers didn’t have notes or frameworks like Universal Design for Learning or backwards design. None of that was available. Yet, just the good intention of having Becky included meant she ended up with lifelong friendships, tremendous opportunities, her language and communication flourished, and she was cared for and known in her community.

I can say the same for my sister, who’s 41. And then fast forward a few decades, I can talk about my son’s education.

Genia Stephen:
When my older son was at the age to enter school, we actually didn’t think we were going to send him. We thought we’d homeschool him. But at the wise old age of four, he decided, “No, I want to go to kindergarten.” So we supported that and I went to interview schools.

In our community, we have a French language school that’s part of a board encompassing all the French language schools in the surrounding and outlier communities. Our town is one of them. I spoke to the principal and said, “I’m looking for a school for my older son, but I’m also thinking about my second child. I’m a little nervous. The school speaks French all the time, and we don’t speak French at home. Is this going to be too much for my son?”

She said, “Well, it’s really only in the Western world that people are expected to speak only one language. Pretty much everywhere else, people speak two or more languages. And there are people with disabilities all over the world, and they seem to manage that just fine. I can’t imagine your son would be any different.”

I was totally put in my place and had my expectations checked. We enrolled him in the daycare attached to that school when he was two. He could only go for two hours twice a week because of health limitations. We did everything we could to make sure he was known by the attached school, and he’s been there ever since. He’s in grade nine this year.

It hasn’t always been easy or positive. He’s had some years with teachers who weren’t sure what to do. We’ve had years where it felt like we were taking steps forward and then hit a wall. As a school team, we’d turn around and try a different direction. But there’s been consistent effort by the school team to make sure my son is a member of the school and classroom, that he has access to the curriculum, and that he’s being taught the curriculum. Overall, it’s been a very positive experience for him, despite its imperfections.

Tim Villegas:
What is your dream? When you think about education in the future, what would you love for it to look like?

Genia Stephen:
The short and sweet answer is I’d like it to look like all kids being educated together. Not just placed together, but with real attention to all of the isms—ableism, racism, and others—so that kids aren’t just physically together, but truly educated together as a community.

Tim Villegas:
What about your podcast? You started it and have been doing it for a while. Where do you want to see it go in the future?

Genia Stephen:
Part of the reason I started the podcast—besides what I’ve already shared—is that it made me so sad to hear parents of older kids, teenagers aging out of the school system, say things like, “Why didn’t anyone tell me this 20 years ago?” They’d say, “My son or daughter is graduating from high school and there’s nothing. They have no life. All we’re being offered is residential programming and day programming, but no real life.”

So my goal has always been to get the podcast—not me personally, but the voices of the people I have on the podcast—into the hearts and minds of parents early in their parenting journey. Supporting someone with a disability to build a positive and inclusive life is simple in some ways, but it’s not easy. It’s really hard because we still live in a society where people with disabilities are profoundly devalued and underestimated.

I often say that supporting people to build a good life is like pushing a boulder uphill. Starting when the person is 20 or older is like pushing that boulder uphill during a landslide—it’s just that much harder. So my goal for the podcast is that when people start thinking about decisions around education, friendships, recreation—when their children are very young—that Good Things In Life will be a place to start. Not something they find later when they’ve become disillusioned with a medical or therapeutic model of disability. I want it to be an alternative way to think about parenting a child with a disability.

Tim Villegas:
If you’re listening to this, make sure to subscribe to the Good Things In Life podcast and share it with people you know—especially those at the beginning of their journey, like Genia says. We want to support you in the goal for the podcast. Let’s see, what else do I want to ask you? I felt like I had a question and then it just—poof—went away.

Genia Stephen:
That happens to me all the time.

Tim Villegas:
Oh, you know what? When I was on your podcast, I think you’re the one who asked me, “Is there anything you wish I would’ve asked you?” Was that you?

Genia Stephen:
Yeah.

Tim Villegas:
So I’m going to turn that back on you. Is there anything you wish I would’ve asked you?

Genia Stephen:
I need to stop doing this to people. It really puts people on the spot.

Tim Villegas:
Now you know how it feels.

Genia Stephen:
Yeah, I definitely need to give people a heads-up about that. I don’t know that I wish you had asked me this, but I think people who listen to your podcast already know: there is an alternative to “special.” I’m not saying anything new, but I guess the thing I most want people to know is that if what you want for your child is the typical good things in life—relationships, the opportunity to contribute, personal growth, a feeling of belonging—then the path you need to follow is the typical path to getting those things. And it’s never special, separate, or specialist. It’s about living your life at the heart of community, the same way everyone else does. That pathway, just by walking it, creates opportunities for good things to happen. And that’s true even when it’s not perfect. But there’s no alternative to that that works.

Tim Villegas:
See, it is a good question.

Genia Stephen:
It is a good question.

Tim Villegas:
It is because it’s like, “Oh, I have to think of the most important thing off the top of my head—go!”

Genia Stephen:
Yeah, that’s true.

Tim Villegas:
Very, very good. Can you give us all the details—where people can find you, where they can listen to the podcast, anything you want to plug? I think you have some online courses. Whatever it is, just go ahead and tell us.

Genia Stephen:
Sure. The easiest place to find me is https://goodthingsinlife.org, and all the other links are there. One of the things we just started doing is inclusionary podcast parties. You’ll receive your invitation soon if you haven’t already, Tim. We’re inviting guests of my podcast to join a Zoom party and inviting all listeners to join as well. It’s a way to increase community and direct connection to the thought leaders I’m so blessed to have on my podcast.

If people are interested in attending inclusionary podcast parties, they can go to https://goodthingsinlife.mykajabi.com/inclusionary-podcast-party. All the links to our monthly membership Inclusion Academy are also available at goodthingsinlife.org. It’s a good one-stop place to go.

Tim Villegas:
Okay. Thank you so much, Genia Stephen, for being on the Think Inclusive Podcast. We appreciate your time.

Genia Stephen:
Thank you so much for having me. It’s been fun.

Tim Villegas:
That will do it for this episode of the Think Inclusive Podcast. Subscribe via Apple Podcasts, the Anchor app, Spotify, or wherever you listen. Have a question or comment? Email us at podcast@thinkinclusive.us. We love to know that you’re listening.

Thank you to patrons Pamela P, Veronica E, Kathleen T, Mark C, Sarah C, Kathy B, and Sonya A for their continued support. When you become a patron, your contribution helps with the cost of audio production, transcription, and promotion. You could even get a shoutout like the fine people we just mentioned. Go to https://www.patreon.com/thinkinclusivepodcast to become a patron and get access to all our unedited interviews, including our conversation with Genia Stephen.

This podcast is a production of MCIE, where we envision a society where neighborhood schools welcome all learners and create the foundation for inclusive communities. Learn more at https://www.mcie.org.

We’ll be back in a couple of weeks to talk with Emily Ladau, Think Inclusive alum and author of Demystifying Disability.

Emily Ladau:
I think the most important thing to understand is that “ally” is not a title we can just bestow upon ourselves. Allyship is very much an action. Ally is a verb, not a noun, despite what grammar rules may tell you. To me, it’s all about the actions you take. It’s not about taking actions and looking for a pat on the back. It’s about incorporating them into everything you do in your daily life.

Tim Villegas:
Thanks for your time and attention. Until next time, remember: inclusion always works.