Disability Awareness | Undivided Conversation

Full event transcript: Just starting off, you've taught disability awareness to a variety of audiences. You've taught college students and teachers, but also kids, and what, in your experience, how does teaching kids about disability differ from teaching adults? It shouldn't differ. The content should be the same. Our focus should be the same. However, the attitudes of kids, attitudes of younger people are much less stuck in ableist attitudes. They can be... They can be brought around very quickly, so there's not as much baggage to unpack with younger people, so that's really the main difference. You know, their... Children are generally more open, more receptive, more willing to commit to making the world more accessible, willing to make the world a better place in general. If a parent wants to talk to typical kids about disabilities or other kids with disabilities, what strategies would you recommend that they use? Funny you should ask. I have a resource that I created that is called ‘How to Talk About Disability With Kids,’ and it can be found on my website, dianapastoracarson.com, and in there I lay out the main strategies or the main focus of any disability awareness endeavors, which, one, is disability is normal and natural. That should be the framing of it. It's normal and it's natural. It's not exceptional. It's not this horrible, pitiful thing. It is normal. It is natural. Everybody is going to be disabled at some point in their life. Most of us, nine out of ten of us will have a disability. It's the one minority group that anybody can join at any time, right? So frame it as normal and natural. Another one is it's a valuable part of diversity. The wisdom, the experiences that come from disabled voices and disabled lives is valuable to our conversations around diversity and deserve to be part of the ‘us,’ part of the inclusiveness of our... what we're striving for. Also, framing disability as worthy of respect and dignity. That is so important because historically, it hasn't been framed that way, and even today, much of what we see on social media is very infantilizing, and framed in pity, and so we want to frame it as worthy of dignity and respect. Also, framing disability from the perspective that people are more disabled by societal responses to disability through ableist attitudes, through lack of access and lack of inclusion, than they are disabled by their physical or mental or developmental disabilities or limitations. So framing it that way, that there... it's the social model of disability, saying that people are disabled by their environments and other people's attitudes rather than how they were born or a disability that they've acquired, okay? We want to also acknowledge the barriers that exist, the societal barriers, inaccessible environments, ableist policies and attitudes, and those are what people are overcoming. Instead of saying, “Oh, you know, I admire you because you're overcoming your disability,” it's not about overcoming the disability. I mean, there may be some aspects of that that ring true for some people, but in general, people are overcoming all the barriers that exist in their lives to having life quality, to having access to education, access to health care, access to housing, access to employment. I'm talking about, as they get older, as people age in the disability community, they find these barriers that are very pronounced in their lives, and so we want to... we want to always acknowledge societal barriers as what needs to be overcome. Never framing disability as inspirational. People with disabilities don't exist to inspire us. They're living their lives. Stella Young has a wonderful TedTalk called ‘I'm Not Your Inspiration, Thank You Very Much,’ and in it, she talks about... There's this meme that says the only disability in life is a bad attitude, and she says it so well. She said if I'm in front... She uses a wheelchair, or used a wheelchair. May she rest in peace and power. She used a wheelchair, and she said no amount of staring at and smiling at this flight of stairs is going to make it accessible, make me any less disabled. Those... My attitude has nothing to do with whether I'm disabled or not, or have access or not, and so that's something to always remember. All right, another thing is, never frame disability as tragic, something we should feel pity for, or something we should be thankful that we are not. I have actually heard a parent say to a student, “Aren't you glad you don't have to use a wheelchair?” and that's a message we don't want to send. That student is going to forever remember that and have... and then it's going to be perpetuated among peers and community members who have disabilities who don't need that, don't need that ableism in their life, additionally. When we're doing... and that was... that was at a disability awareness event, mind you, okay? And then another thing is to never use euphemisms for the word disability as if the word disability is this terrible thing, that disability is a terrible thing, and by euphemisms, I mean words that make it seem not quite as bad as people think it is, such as ‘handicapable,’ or ‘differently abled,’ or ‘special needs,’ or ‘exceptional,’ or ‘special.’ All those things we use because we're so uncomfortable with the word disabled. Disability is not a bad word. Use it. There's no need to replace it with euphemisms. Use it respectfully. One common thing I've seen schools or parents or other groups do when they're talking about doing disability awareness, sometimes they talk about doing like a simulation, like putting a kid in a wheelchair or putting a blindfold on them. So, that's what we've been trained to believe, that that's what to do, and so if I put a blindfold on a student and they're... they can't see anything with their eyes for one minute, or two minutes, or ten seconds, or whatever, are they going to experience what it's like to be discriminated against as a blind person? Are they going to experience what it's like to not have access to spaces, whether in person or online, by wearing that blindfold? What is the purpose of doing that, and what is the outcome of doing that? If it's to say, “Wow, I didn't know it was so hard to be a blind person,” how is that progressive? How is that going to be helpful? Is that focusing on societal barriers or is that focusing on somebody...? It's focusing on how we perceive somebody else's existence, right? And somebody who's born blind doesn't necessarily feel it the same way that you feel it in that ten seconds or one minute that you did it, so out with the old, in with the new, and simulations are the old, okay? Yeah, and same with wheelchairs. I have done wheelchairs when I was focused on assistive technology, and here's how I did it. I had two sets of wheelchairs. I had a medical wheelchair, very big and bulky, and then I had a sports model wheelchair, and I had the students try out both to see which one worked best for shooting hoops, so that... not that they would leave with the thought, “Oh, I'd hate to use a wheelchair,” but, “Wow, what a difference the right technology makes in providing access.” So in a school then, a good assembly would be to bring in somebody with a disability to talk about their disability. I bring in 20 to 30 people in a day. And I have... I do trainings on this where I bring in a variety of people from different walks of life, diverse as can be, and I bring them in to talk about what I call the five fundamentals. Their talk... I mean, it's going to be obvious to the students that they have a disability and they can ask questions because that's what they're here for. However, their assignment, the speaker's assignment, is to talk about certain things. Ableism. To call out ableism. Understand... now, I'm not saying that first graders are going to know what ableism is, but they're going to know when somebody is not treating somebody kindly because they look different or they talk different, okay? So that's... so we can... We can talk about it that way. Talk about access and inclusion. Everybody has access needs. Not everybody is able to access our school environment. Not everybody is able to access the playground. Not everybody is able to access the online forum. Not everybody is able to... All of these different ways that student... a game, or access the crayon box or whatever it... access friendship, or communication. Those are important things for students to start thinking about early on. What does my friend not have access to that I do? How am I privileged, okay? So access is important. Assistive technology. Students can think, “Wow, this person would have more access to the same things that I have access to if they had this kind of assistive technology.” And they're supposed to talk about disability history, disability rights, and disability justice. I never learned it until I was teaching a college course and had to learn it, because I never learned it in my master's... special education master's program. I never learned it in high school. It's a... Disability rights is a civil rights issue, and yet it's not in our textbooks, it's not in our curriculum, and so we need to put it out there, which is why I wrote a children's book about it. It is so important. And then the fifth category that they are talking about is respectful language. So those are the things that are the focus. When we keep our focus on those things, and they're telling their stories, but they're weaving in these topic areas, that's how we're going to see the world become a better, more accessible, more inclusive place. That's how we're going to see our schools, our educators, the students in our schools understand their role, our role in disabling people or empowering people. So very young children, like maybe first grade, second grade, can they really understand these quite complicated concepts? We're not necessarily going to use all those words, and we're not necessarily going to use all those topics at once with the students, but if they have it throughout the year and it spirals or if they at least have it once a year and it spirals, then they will get it. With my younger students, I've always... especially with my kindergartners, and preschool and first grade, would always take advantage of my friends. Not take advantage, but I would always invite my friends who have... who are blind or have low vision and who have a service dog because the students loved to have the dog, and so they would share stories about being out. They could talk about how their dog provides them access to environments and how... and touching on ableism, how some people have not respected that this dog is a working dog, and they've gone up to pet the dog without asking permission, and those are some things that are not helpful, right? And so you... The person understands that you're talking to younger children right now. I find people who I trust that they know how to talk to younger children and know how to frame ableism in a kid friendly manner, or know how to frame assistive technology in a kid friendly manner, or access and inclusion in a kid friendly manner, okay? If a parent wanting to do something on a kind of minor scale, like just going in and talking to the class, some people might worry that it might backfire. Is there some pitfalls of the disability awareness that you could make things worse by having a misguided approach, do you think? Absolutely. I think you can make it worse. You can perpetuate what we're already doing. For years, I was doing the simulations and I was doing everything... I didn't realize I was doing it all wrong. It wasn't until I started teaching a disability studies class at the college level and started reading and listening to disabled voices that I... and learning about disability studies, that I realized I'm doing this all wrong. No wonder things... No wonder there's so much resistance to inclusion. No wonder we have bullying in schools. We're doing this all wrong. We need to have children understand that people have needs. It's normal to have needs. Everybody has different needs, whether disabled or not, and so as a community, as a learning community, as a living community, it’s... Part of being a good human is ensuring that everybody's access needs are met. We don't, on the first day of school, walk in and say, “Look, everybody, we have this new student and this new student is disabled, so let's everybody be nice to them.” That's not going to work. That's not dignifying. That's not respectful. What's important is how we model, how we model our interaction with that student, how we do not talk about them, but we talk with them. We talk to them in a respectful, not a patronizing way. How we presume competence and include them in decision making. That's the modeling that the other students need to see, both by the parents, the families, and the educators and administrators. That's what we need to be doing, and then we have the classroom conversations in those teachable moments as they arise when if there's a need to talk about people's behavior or a need to talk about different issues that might come up, we do it once we are a trusted learning community, and we do it in a loving way, and we do it with the consent and involvement of the individual. When my kids were in school, like basically around kindergarten or first grade, I started to notice if I was if I was volunteering in the classroom, the kids had a lot of questions about other kids’ disabilities. They would ask about the kids who, as grownups, knew was autistic, right? But it was like no one had told the kids, Like the grown ups all understood, but... so what do you think is the right kind of age to do that? And I think that they need to know, they need to have it explained to them. I don't think we need to label kids. I don't think anybody's entitled to knowing somebody else's label if that person doesn't consent to it. As an educator who modeled for students without telling them this child has a disability, I saw the effects of my modeling on the other students in the class, and I didn't just do it for the kid with a disability label, a diagnosis. I did it for all students. And I think that that needs to start as early as birth. We just need to model kind, accepting, inclusive ways of being. What would you do in a situation where you're in the classroom and they bring up a different class member's disability? Say you were talking about disability and they asked about another child. In that situation, you can't talk about another child either, right? It's really important that we don't do that, that we... if there's a behavior or an issue that is happening, but we're not talking about a disability, we can talk about specifics and how to meet everybody's access needs. If there's... let's say there's a situation where somebody is being too physical with somebody else, a child with a disability is being too physical, well, we're not talking about the disability. We are talking about the action and the access needs of the rest of the students for safety, and wanting to be affirmed. We can talk about that, and we talk about that not necessarily whole class, but we bring the two students together and we have an intimate conversation about how can we resolve this issue, how can we make sure that both of your needs are met right now, not necessarily using that language, but that is the goal. Meeting both student... maybe one student need some more attention right now, and maybe the other one needs to just know that they are valued and loved as well, and they will be protected. Are there questions about disability that kids might ask that parents should kind of be prepared for? Well, one of the things that students ask is what's wrong with him or her. What's wrong with them? And so, yeah, when that happens, “Nothing's wrong. Everybody's different.” Everybody's different. We don't necessarily need to focus on that individual, but say everybody's different. Some people have legs that walk and some people have wheels that roll. Some people communicate through typing or pointing. Some people communicate through spoken word. Some... Just going over that it's normal and natural to have these differences, so nothing's wrong. That would be the response. Nothing's wrong. So recommending books to use with kids, you've written a kid's book about disability awareness or beyond awareness. Would that be a good book to read in a classroom or...? So I have a a children's book called Ed Roberts: Champion of Disability Rights, and that's because when I was teaching third grade, we were doing these American hero projects and students were picking... I really wanted it to be a diverse group of American heroes, and I realized that there were no disabled American heroes. There were no books about disabled American heroes, and I kept complaining. Several years, I complained and I complained, and then I realized nobody's writing a book, so I better do one myself, so I wrote one about Ed Roberts, who was the father of the independent living movement here in California and he’s a champion of disability rights. Some of my favorite books, if you were going to ask, there's so many and I don't have a list of names, but one of them that I really love is We Move Together, and it's just about how we work together to ensure that everybody's needs are met. And representation matters. It's great to have books that have visual representation of people of diverse backgrounds, whether it's disability or not. So you've done... You’ve worked in a lot of different schools. You've been a teacher yourself, but you've also worked in schools on disability awareness. Do you find that... Is every school open to doing this? What kind of process would a parent have to go through to kind of get this to happen in their school? I think that, coming from a parent who's involved, let's say, like in the PTA, it would be more well-received. Just somebody who's not involved in anything else, who the administrator and teachers don't really know, there's a know, like, and trust factor that has to be there, right? And so it's important for them to know, like, and trust you. And then... And that could be within the school or even just within the classroom, so if you want to do it on a small scale with your child's classroom, have that... build that relationship with the teacher. If you want to do it with a school... with a school wide focus, then get to know the principal and the assistant principal and the PTA board and see what can be done. In general, I have found PTA is very much receptive to doing some kind of a beyond... I call it a ‘Beyond Awareness Celebration,’ and I have a book, Beyond Awareness: Bringing Disability into Diversity Work in K-12 Schools and Communities, that tells how I did it and what the focus is, and I also have a trifold laminated guide called... What is it called? It’s called Beyond Disability Awareness for Educators: An Educators Guide, and those... all those can be found on my website. But... So it's... I think that they are receptive as long as they trust that there... there's a structure and that you are committed to it. They don't want to waste time. They don't want it to be controversial in any way or problematic in any way, so it's important that whoever heads it up is, if they're going to do school wide, that they kind of got training on how to do it, which that's what I do.