Diana Pastora Carson :
Welcome to the Beyond Awareness: Disability Awareness That Matters podcast. Here, you will find a safe space to learn and grow with leaders in education, Disability Studies, disability advocacy, and diversity, equity and inclusion conversations. Specifically, we look at how disability fits into diversity, equity and inclusion, and how to frame disability awareness. In the context of educating K through 12 communities, this podcast serves educators, parents, and community members who strive to learn and or teach about disability in a research-based and respectful way. Moving beyond simple awareness and diving into inclusive and socially responsive conversations. Thank you for joining us today. Now let's go Beyond Awareness.
Diana Pastora Carson :
Hello, and welcome back to Beyond Awareness. I'd like to welcome our guests Norman Kunc and Emma Van der Klift. Although they are well-known speakers and advocates within the disability rights community, they prefer to think of themselves as modern-day storytellers, continuing the long-held tradition of using humor and narrative to initiate self-reflection and social change. Norman and Emma travel extensively throughout North America and abroad, providing in-service and training in the areas of inclusive education, employment, equity, conflict resolution, and other disability rights issues. Norman and Emma's first book "Being Realistic Isn't Realistic" is a collection of their writing on disability, identity, inclusion, and innovation. In addition to those, Emma has recently published, "Talk to Me: What educators (and others) can learn about de-escalation from hostage negotiators." Wow. What a title. Welcome to both of you. Thank you so much for being on the podcast.
Emma Van der Klift:
Thank you for having us.
Norman Kunc:
Thank you.
Diana Pastora Carson :
So, I'm gonna start with Norman. Norman, you have often talked about the right to be disabled, and I'd like for you to tell the audience how you came to that insight about having the right to be disabled.
Norman Kunc:
Sure. From five years old to about 13 years old, I went to a segregated school for kids with physical disabilities, and a significant part of each day was devoted to physical therapy, occupational therapy, speech therapy. So the implication was, I wasn't good enough as I was. I had to improve. I had to, as it were, beat my disability or overcome my disability, and I really bought into this. I say that I was the kid that physical therapists only see in their dreams, right? If they want 10 repetitions of an exercise, I did 15. So whether it's speech therapy or occupational therapy, I was determined I was to beat my disability. It was also almost like the disability was my enemy and I had to win the war against my cerebral palsy. During that time, the idea of finally getting into a regular school seemed like that was the definition of victory.
Norman Kunc:
If I got into my regular school, I had made it, I conquered my disability. So, when I was 13 years old, I did in fact argue my way into a regular school. But to my surprise, rather than winning the war, I just shifted battlefields. Because now, rather than trying to conquer my disability in the physical therapy room, I was trying to conquer the school cafeteria, trying to eat in as a nondisabled way as I could. I was trying to talk clearly so you could be accepted etcetera. And that continued, through high school and through university. I would go out with girls. The foregone conclusion in my mind is the less disabled I was, the more the girl would like me. So that was my world, up to, I was, I don't know, 21 or so. And then in university, a pivotal moment happened one night at university pub.
Norman Kunc:
I was sitting with a group of my friends, and one my friends friend, told a story about me, and when he came to my part of the story, he imitated my voice, and he said "Then Norman said, 'oh wow look the lights.'" So afterwards, I said to my friend, "Why did you imitate my voice?" And he said, "Cause you talk like that." I go, "Yeah friend, I know, but like, I'm articulating my words clearly, I'm not drooling, I'm picking up the glass, I've got an academy performance going here. You imitate my voice, my whole show goes out the window." And he said, "Norman, why are you trying to be non-handicapped?" And no one had ever asked me that question before. I remember just sitting there, stunned about thinking, "Yeah, why am I trying to be non-handicapped?" So, we drank a lot of beer that night, and I remember in conversation actually saying the phrase,
Norman Kunc:
"So you're saying that I have the right to be disabled?" And those words came out of my mouth and I heard myself say it. And I went, "Oh, what did I just say?" And that transformed me because before that, I'd always seen disability as within me, as a problem within my body that I had to correct, but what I figured out that night was that I saw disability from a far more sociological perspective. And for the first real time in my life, I realized for the first time, that there were a lot disabled people in the world! Not only were there disabled people in every country in the world, but there have been disabled people in every era of the world, you know? The Romans, the Bible, the Mayans, so I recognize that I was part of a larger community. So that was a real key issue. Now, that had a huge impact on me because when I saw, say for example, I come up to a flight of stairs, I would argue for a ramp.
Norman Kunc:
I would believe that that ramp was an accommodation for my impairment, right? Once I figured out disability was a social problem or that there were disabled people in society, it suddenly hit me that that ramp wasn't an, accommodation for me. It was the correction of an architectural error because if we build a building only with stairs, that's founded on the idea that people shouldn't be disabled. But once you figure out that disabled people are an inherent part of society, then you realize that building a building without a ramp is an architectural error. So the ramp wasn't something for me, it was correcting an architectural error. So that made huge paradigm shift in not only how I saw myself, but the fundamental concept of disability.
Diana Pastora Carson :
That's profound. That is a huge paradigm shift, Norman, I love that. I'm gonna steal that, and I'm gonna quote you with that many times over that a ramp is a correction of an architectural error. It's not this accommodation that we thought it was. Wow. Thank you. Awesome. Thank you for sharing that, Norman.
Norman Kunc:
I'm glad it's helpful.
Diana Pastora Carson :
Yeah. Yeah. I think what you said, not only speaks to the teachers who are listening and the community members and administrators who are listening, but also to parents, really looking at how they view their child who experiences disability, and how their energy about disability and their beliefs about disability affect their child's perception of themselves.
Norman Kunc:
Yes.
Diana Pastora Carson :
Thank you. Okay so I'm gonna turn it over to Emma now. So Emma, how does this idea of having the right to be disabled apply to your life as an autistic person?
Emma Van der Klift:
Well, I should just say that, you know, back when I first met Norm, which is about 30 odd years ago, and he was talking about this already then, and I remember being really riveted by that and the whole idea of the right to be disabled. I was working in an organization that provided support to people with intellectual disabilities and their families at the time, and I remember really thinking hard about the implications of a statement like that. It wasn't until many, many years later that I began to understand that it had something to do with me as well. And, you know, I like to say, and I've said before that, you know, some people get really riveted by a message, and I got riveted by the message and by the speaker too. So, you know, some people take a good message home with them, I took the message and the speaker.
Diana Pastora Carson :
You married him!
Emma Van der Klift:
I did, I did. Smart move. And you know, it wasn't until many years later that I began to understand myself as autistic. And that is not unusual for women and girls. I flew under the radar and I have a lot of my past, especially my school past, that really, I understand it now in that context, but at the time there wasn't anything like that in my community. There were no diagnoses for people like me. Everything that I did or didn't do was put down to a moral failing. Could do better, much try harder, you know, that litany of teacher dissatisfaction. And, I was never really seen as dysfunctional. I was seen as underperforming. And I would put to any educators who are listening, that there may be a lot of girls and young women who fit that profile. And it took me a long time to understand that the right to be disabled also had something to do with me.
Emma Van der Klift:
And once I began to understand that after I got a diagnosis, I began to take it on and think about it in terms of pride. Of an identity. And, also, it made me reconsider a lot of the things that I had done in the past while working with people in organizations and in preschools, et cetera, et cetera. And what I realized was that we often, in education and in other services, we ask people to out the areas of their "so-called" incompetence all the time. We're always working on them. If you only overcame your disability, then you could belong. So, a series of hoops that people have to jump through all the time. And I realize that I'd been complicit in that. And, you know, we get people who then act out, that's another phrase that we hear often, and you wonder why? Well, when we're always asking people to work on stuff they're not good at, it's really unsurprising that that would happen.
Emma Van der Klift:
And I guess I began to really reconfigure my whole life in this way and began to look at my past and actually reabsorb it, if you like, you know? We went to a conference in Washington state and my friend Kassiana was there and Kassiana is autistic, and she was doing a presentation and she was unabashedly, unashamed about asking for the accommodations that she needed. She said, you know, I need the lights to be down, I need people to stay where they are, please don't move around too much, you know, no going in and out of doors. And I remember thinking, you can do that? You can ask for accommodations? Wow. Because my whole life had been spent in this arduous task of passing. Of pretending that there was nothing going on with me, and it is an exhausting process. And it was just very liberating to realize that I could do that, that I could ask for the fluorescent lights to be turned off. Little things like that, and that people would, by and large, do that. So that was a big turning point for me, as well. But like I said, the idea that I had the right to be disabled, didn't really occur to me until many, many years later.
Diana Pastora Carson :
I love what you said about her not having a problem asking for her accommodations and that people were, by and large, willing to do that, and I think part of it is, you know, so often people with disabilities have to overcome a feeling of being a burden to somebody else or imposing on somebody else's comfort or convenience. And
Norman Kunc:
Well, if I can jump in here, I think that all people are very, very hesitant to ask other people for help.
Diana Pastora Carson :
Yes.
Norman Kunc:
Because we're terrified of being seen as imposing on others.
Diana Pastora Carson :
Right.
Norman Kunc:
And, then, you know, I think one of the things that I've learned from being disabled is I'm very comfortable for asking people for help when I need it. I can remember going on a sailing trip with two guys, and one guy did not know me at all. He had no experience with my disability. And this is an offshore sailing trip, so there's some degree danger. So this guy was nervous. And I said, "Look, when I need help, I will ask you, but if I don't ask you, trust me that I can do it myself." And that gave him a sense of clarity and relief. But what it seems that many nondisabled people aren't able to say. That it's almost like they're giving up with sense of their autonomy or their identity by asking for help.
Emma Van der Klift:
And one of the things that we've often said to educators is that if there is one thing you could do, that would be of the most help for a disabled student, it would be to help that person learn how to advocate for themselves and how to ask for what they need, because that's a skill that will take them into adulthood, et cetera. You know, we talk about the whole idea of what happens after school is finished. You know, the outcomes and all of that stuff. Well, the best outcome is to have a person who can do what Norm did and just say, you know, this is what I need. Now, I'm not gonna imply that for Kassiana and for many others that this has been an easy road. I know that her time in college has often been really difficult because people don't want to make those accommodations, they feel that it's an imposition. And, you know, I mean, she had one instructor in particular who told her that he couldn't turn, he didn't wanna turn down the lights because he didn't know how to use the light switch.
Diana Pastora Carson :
Wow.
Norman Kunc:
So let me build on that to give teachers a very practical idea about how to do this, very quickly. One of the ideas we recommend to teachers in order to encourage and build this idea of initiating the support you need is they come up to a student and say, "How can I help you? What support would be most helpful?" And most kids would say, "I don't know." And the next question is, "Well, what would you say if you did know?" So you give the kids permission to just give their opinion without the fear of being right, and if the kid still says, "I don't know," then the teacher can assume the role of waiter and say, offer menu choices. "I could do this. I could do this. I could do this. Or I could do this. What do you think could be more helpful?" And through that process, that's a very simple and straightforward way that you are coaching the child or the student to begin initiating the support that he or she needs.
Diana Pastora Carson :
That's beautiful. I love that hands on strategy. Thank you so much Norm for that. All right. Well, it's been lovely to have your stories. Thank you for being the excellent storytellers that you are and sharing. So
Norman Kunc:
Thank you for asking us.
Emma Van der Klift:
It has been fun.
Diana Pastora Carson :
It has been, thank you
Norman Kunc:
If I can add one thing at the end.
Diana Pastora Carson :
Sure.
Norman Kunc:
You asked about one thing with parents. We've talked about teachers, but one thing with parents, and the right to be disabled. Many parents, I think are afraid if they don't do consistent, relentless therapy, whether that be physical therapy or ABA or whatever therapy it is, then the child's future will be horrific.
Emma Van der Klift:
We call that the Armageddon mindset.
Norman Kunc:
Right. And so they get focused on, I want to avoid this disaster, and this is the only way. I think what we've realized and what several autistic adults would tell you is that innovation delivers what rehabilitation promises. I don't need to be less disabled. Emma doesn't need to be less autistic. We need little work arounds
Emma Van der Klift:
Yeah.
Norman Kunc:
or supports that helps us to live our life. I don't need to have better fine motor control. I need a button hook and other things in my house to let me do stuff.
Emma Van der Klift:
And for me, I think what would've been most helpful for me as a child, would've been to have role models. Other autistic people who knew what it was like to live in my skin and mentors. And I think that that's something that parents and others can do. You know, find those people, listen to them, have conversations with them, there's lots of people online. There's lots of people all over the place that we can go to and say, you know, this is what's happening. Or, you know, what would you do if, or any of those things? So,
Diana Pastora Carson :
Absolutely, absolutely and valuable information. Great advice. Thank you so much. So Norm and Emma, where can people find you if they wanna look for you?
Emma Van der Klift:
Well, they can find us at our website, which is www.broadreachtraining.com. And we're on social media as well. We're on Facebook.
Norman Kunc:
Emma is.
Emma Van der Klift:
Yeah, well, yeah, on Facebook. And we do have a couple of books if anyone's interested, "Being Realistic Isn't Realistic." And, also, "Talk to Me," so, and we're working on a third one which actually does start to unpack the idea of therapy and making connections between physical therapy and compliance based therapies and how they can be problematic in the creation of a sense of self and self-esteem going forward. Maybe, you know, some therapies can be really important, but others can be really damaging.
Diana Pastora Carson :
Thank you so much. Appreciate both of you being here today.
Emma Van der Klift:
Thanks for having us.
Norman Kunc:
Thanks for having us.
Diana Pastora Carson :
Thank you for tuning into this episode of Beyond Awareness: Disability Awareness That Matters. If this was helpful to you, be sure to subscribe, rate and review this show on Apple Podcasts, Google Podcasts, or Spotify. You can also follow me, Diana, on Instagram @dianapastoracarson and on Facebook at www.Facebook.com/GoBeyondAwareness. Or you can go to my website for more information at www.DianaPastoraCarson.com. My books include Beyond Awareness: Bringing Disability into Diversity Work in K-12 Schools and Communities, as well as my children's book, Ed Roberts: Champion of Disability Rights. They can both be found on Amazon. For your free Beyond Awareness resource called the "5 Keys to Going Beyond Awareness," simply go to www.GoBeyondAwareness.com/keys. This podcast transcription and podcast guest information can be found in the show notes. Intro and outro music has been provided courtesy of Emmanuel Castro. Thank you again for joining me. Be well, be a lifelong learner, and let's be inclusive. See you next time.
