Episode 58: History of the Disability Rights Movement and Person First-Language

Transcript

Arthur: This is the inclusion think tank podcast brought by all in for inclusive education where we talk about inclusive education, why it works on how to make it happen. On today’s episode I welcome my guest, Dr. Heather Austin, director of special services at Clark public schools. today. Heather joins me to discuss presentation from the All In winter conference titled the history of the disability rights movement, and person first language. We engage in a discussion about the history of the disability rights movement, the progress that still need still made, and how the way in which content is presented informs our own teaching practice and engagement in social spheres

Arthur: I would like to welcome everyone back to a new episode of the Inclusion Think Tank podcast brought to you by all in for Inclusive Education. I'm your host. Arthur asked him. And today I'm joined by my guest, Dr. Heather Austin. So, Heather, thank you for joining me today. I'm happy to have this conversation.

Heather: Great to be here. I'm so lucky to be sitting with you, Arthur.

Arthur: Yes. So you and I, we met at the recent winter conference that we held in Galloway in January. And so we're here to talk about your presentation and to get to know you and the work that you do regarding inclusive education.

So to start off the conversation, can you share a little bit about your story, some things that you like to do for fun, hobbies or books or movies that you enjoy and also how you got into teaching and educating.

Heather: I appreciate that. Yes. So, well, I'll start with some of the kind of fun stuff. One of the things I like to do in my free time is I like to create and work on creating this ever growing archive of our family history. I organize photographs, I label them. As a teenager, I used to audio record my grandparents tell stories about what it was like when they were growing up and also sort of the life lessons.

That was that was my idea. Fun. It still is. And now that, you know, I think as as you age, you become more reflective. I'm recognizing that it's important for me to write this down and create what I think is a very user friendly, accessible sort of archive for my children and their children. So I'm really quite passionate about that.

I do that. In recent time, when I was a teenager, I played the harp very briefly, so I actually have a harp and I've been refurbishing it, cleaning it up, getting ready to start playing again. So, now that my children are older, my youngest is 18 and finding I have a lot more free time. So what do you need to find ways to fill this time so that that's what I'm doing.

One of the things I love about both things is that it's much more tactile. And I get to, you know, use my hands and my brain and time flies. So what else? So about me, I think I was sharing with you before that I think the person I am is composed of all of these wonderful experiences that I've had in my life.

I'm a single parent to my three children for much of much of our life together. And my oldest daughter has Down syndrome. And I found out in utero that she did have that as well as a heart condition. And in the moments that followed that news, I realized that how I saw her and the value of her life, especially being so young, I was so young and she was at her infancy, clearly that we would have a journey together in which we would be fortified by our efforts to to advocate, to love each other very, very deeply.

And also as her siblings joined. So my oldest is Nadia, and her siblings are Khalilah and Ayman, that this journey together would would really bring us so much love and deep gratification. And also, it was interesting understanding what her uniqueness was. What made her so special was also brought about this question. If I wanted to keep her and I thought to myself, I've been given this great, huge decision making capability around the way others perceive her life.

And and all I knew was that she was living and existing within me, and my job was to bring her into this world and how could I stop the momentum of such greatness? So in the course that followed especially when she was born in her younger years, people would say, oh, you're so naive and, you know, sort of unrealistic about what you want for her.

And I said, No, no, I live in my own reality. No worries there. And we're forging ahead.

Heather: And indeed, we did that. And I'm happy where we found ourselves. And I took that further into my work. How I got into education was I was an anthropology major, and when I had Nadia, I was beginning to finish up my coursework and I recognized the greatest thing I could do was be very hands on.

I really wanted to be very hands on. That's one of the things I loved about studying anthropology and just doing those observations. But also as a result, what you could bring to the narrative in the field.

And I said, Well, I'm a young mom and I'm living here in the Northeast. Then what can I do? How can I get this great experience? And I thought, Oh, you know, I could be an educator because I can do that observation. I can contribute to a positive narrative. I could help families and I can grow in my own experiences.

Heather: I got into special education sort of, I think because I have the background. But my administrator, he actually asked me to become more involved in special education. I think that I had potential to see capability versus deficit, and so that that was an important quality, I think, to bring to the field.

And later down the road, I decided to get my doctorate because I recognized that if I could contribute to the body of work with my own research and therefore also doing more research by being in a doctoral program, I could fully assist others who are equally as passionate about it.

And so it's been it's been a fun journey.

Arthur: Yes. Seeing capability rather than deficit. That was really great. And I also love what you said about when you found out about your daughter's diagnosis and in utero and saying like, who are you to stop that momentum of, you know, who she is to become Like, That is such a great positive outlook.

I think about myself where my parents, they didn't know that I had a disability until I was born, because I was born so many years ago, they didn't have those 3D ultrasounds and all those testings that are available now. And, you know, but I remember my mom saying that she pretty much had that same that same thought, okay, like, well, we'll make it work and let's figure it out.

Make it happen because, I was here for a purpose. So, you know, it's really great to hear that. And now I relate it to you saying about your family history as well of because of my disability, I couldn't, you know, didn't play sports or anything like that. So I spent a lot of time with my older, you know, my grandparents and their siblings and, you know, hearing about family stories and things like that.

So it's really something that I'm really interested into learning about family history. So that's awesome that you're doing that.

Heather: Yeah, it's it's, it's like, you know, taking a peek at where we came from, you know, and the others that have brought us to where we are today. So definitely.

Arthur: Yes. Yeah, yeah. So my next question is how do you define inclusive education?

Heather: So I think I've maintained the same definitions throughout my time because I started thinking about inclusion when I was carrying my child. So, you know, if I break it up into the realm of, you know, how services are delivered, we were in the 0 to 3 zone, right? So, you know, I was trying to do early intervention before this kid even came into the world.

I really look at it like, okay, well, what's the world we live in? We live in a world where we all engage and interact, act and live and breathe experiences. And the school day happens from a start time to an end time. But life happens around that and continues on after school ends. So I was always looking at this big picture.

So in my mind, inclusive education or inclusion as we see it in in, in the school day, in the school building, should really mirror what life is like outside of that. We put emphasis on our social interactions that we allow people to have agency and can choose a journey that is very, very meaningful to them.

Heather: So the way I see inclusion in education is that it should be students coming to school to learn in a way that is meaningful to them, and that that experience should happen with their peers. And and if the way that we see that being done for most of the students is in a classroom that you know, that we can integrate in, then that should be the route and that we should keep all the emphasis on that environment and and that our students should travel with each other throughout the experiences of the day.

So I really strive to minimize the options or the discussions around moving students outside of that, because I do see it that we start to segregate them from their peers who have the greatest impact on their learning and with whom they will spend time with outside of school. They'll see that individual on the soccer field or at the Walgreens.

They'll see them when they are 21 and reporting to school is no longer something that they do. So maybe they'll be sharing space in a company or in a job that they'll all work in. So I recognize that being able to provide that experience to them in a school day is very, very valuable because it'll speak to what the truly the majority of their life is going to look like.

Heather: Peers are so important as well, because I know my son, my child on any of my children is limited. It's limited because I'm an older individual, you know, that my my lifetime has has an end date, but people will continue to live on so their connections with their peers becomes so much more meaningful, And I enjoy seeing who my own children and who my students are when they're informed by the people around them.

You said, wow, your look at your great look at look at how much greater you're becoming. And it hasn't has to do with me parent or me as your teacher. So I think that a school experience should mirror that with what the outside world is going to ask of of our of our growing individuals with and without disability.

Arthur: Yes, that is so true of the you know, the school day has a start and time. And what about that time outside of the school day, the weekends and just the summertime? And like you said, after they are out of school, out of high school and out of college, they will be interacting with each other outside of the the school setting.

So to provide an opportunity within the school day that can mirror what, you know, the experience they would have outside of the school walls, outside of the school building. That's so, so important How it at all. It really connects.

Heather: Two points. One is that I'm always very considerate about making an impact on a person, that it all lessens their sense of self and their ability to advocate for themselves.

And I really fear them taking those experiences and those sentiments and going forward into their adult life, feeling less than in any capacity.

I want to empower an individual to feel that. And in the absence of any types of supports or school or, you know, that they need that they are given the world around them. So, it's really important that I follow what their lead is and not impose upon them my own ideas that they have to continue to fight off.

And if the memory that is so damaging that they take it into their adult life, I don't I know that if I had contributed to that, that concerns me. So my interest truly trying to advocate, I want to lessen the impact of any sort of negative stereotype because people should feel that they can fully be active in the world around them, that they're making meaning on their own because that is their right.

Heather: The other side of it is that I remember and having conversations and planning for Nadia when we were talking about the potential for other types of environments, like a self-contained classroom.

One of the thoughts we had was, you know, these are all contrived experiences. The moment you move somebody away from their peers and you start segregating them based on a, you know, a deficit mindset, you have to replicate everything you had. You know, it's not just happening organically. You have to now force it to happen. So I in trying to communicate this, I said, you know, when I go to Dunkin Donuts with my daughter, I don't send her to the make believe Dunkin Donuts and go practice there, I’m going to the real one. When you mastered you can come to the real and like there's not even room in Dunkin Donuts budget to set up to next to right they just make light of it, but trying to say hey we leave the school day 3:00 we're going to a world that doesn't have simulated experiences. It's all real on demand.

When I think about that, it motivates me to say we have to really always be thinking about inclusion and integration.

Arthur: Yes. So true. Yeah, that's is I love that. That explanation. Yeah, there’s no make believe, you know, simulated experiences that they're all real as with, you know, within the real world, in the community outside of the school. So that's, that's awesome.

So as as I mentioned, you and I, we met actually attended your presentation at the recent Winter inclusion conference that we held in January. And your presentation was titled The History of the Disability Rights Movement and Person First Language. So this question's really in three parts. So I'll, I'll say all three parts. And then, you know, if you need me to remind you of what the other parts were, we can go back.

Arthur: So this question is in three parts.

So first, can you give us a summary of the disability rights movement and can you share what did that the people aim to accomplish?

And who were some of the main participants in the disability rights movement?

And then can you get into a conversation of what is person first language and identity, first language and why is it that some people prefer one language over the other and you know, can you give us a few examples of each type of those disability identity first and person first language.

Heather: So, you know, with this through the disability rights movement, when you can track historical events started in the 20th century. But when you look at individuals with disabilities prior, you see that in the 1800s when when an individual had a disability that could be identified, they were seen sort of as pitiful and a burden.

And the act of segregating was almost seen as as an easement or something beneficial to do. So removing them from the family was seen as a positive thing to do for that person and for the family.

The historical record around that just gives horrific levels of what happened to those individuals. But when we come into the 20th century, we see our veterans coming back from war, having disabilities, and creating a very strong voice around around advocating for themselves and their name and recounting their experience in a narrative becomes very strong, you know, So we see we see all of a sudden individual and that the individual has needs and is willing to

speak up for that. And now they're they're starting to speak up for themselves. And then when we have the civil rights movement in the sixties and seventies, the advocates for individuals with disabilities really participated in this as well. And we're changing the fabric of society to say that everybody comes to the table with an ability to affect change, to enact included, to be able to express what their needs are and offer their own talent and everything to the structures that we have in our own in our society.

And so we see at that time that individuals with disabilities do wanted to count themselves in. And there were critical players in that.

Heather: There’s the list of individuals who have effected change is great. Somebody that I mentioned that I continue to really admire and honor is Judy Heumann and the work that she did to really voice the need to create an inclusive society, environments accessible you know, that was pivotal because sometimes disability is more pronounced because the environment in which we're living is so limited and that if we make our own environment more accessible, someone's potential as a person to be independent is greater.

And then therefore our definition of disability can change. So really adapting environments becomes so important for us In the movement. An individual, Lois Curtis, she was part of the Olmstead versus L.C. case, where you really advocate for independent living. She had a disability and she recognized that she herself and advocates who really worked with her could live independently and can enact their own decisions for their lives.

But yet, because of her disability, she kept being put into institutions. And so that was a really critical case where we saw that, just the ability to be independent in society, to live independently, to take care of oneself is a right that people possess, and that we can't limit that as a result of the disability that we project on to the person or the extent in which we make it more meaningful than it does for them.

So those were those were important pieces, of course, with I.D.E.A. and how we also shape inclusive experiences in schools. All of those things have the landscape for individuals with disabilities.

Heather: Sometimes some of the frustration I have is both a professional and a parent, is that I wish things worked faster. I wish I could change perception more readily.

And but I know that, you know, the more that we hear the voices that are advocating for change, the more change will continue to create.

I think particularly in the movement for individual disabilities and the advocacy, Frank Stevens, who is an individual with Down's syndrome, he always really hit home for me, and for my daughter that does have Down syndrome.

And seeing her for a person who has deaf, who who's living a very meaningful life, it's important. And I think he said some of those exact same words, I think in front of Congress. And that meant something. It meant that he had a life worth living. And and that's important. All individuals have a life that's worth living, whether they have a disability or not.

It's exciting to sit where we sit, where there are so many voices, the value that we're doing.

Heather: So that's a little bit about history. And, you know, I think sometimes my experience with history is also very, very personal. Just because I've lived it as a parent. So there's certain moments that hit home more than others and things that still are current today that are very important to look at is making sure that resources that are readily available.

I remember when my daughter was going to be born, I met with a social worker in the hospital who had very limited access to two resources because it was assumed that maybe I wouldn't keep my child. So when I asked her, I said, Well, who do I contact? You can have more information about that when she's born. You know, I want to get her services.

Heather: That wasn't something that they really had. So I think that it's important that make sure that we're really keeping everybody informed about what benefits a person in general and an individual with a disability from the beginning of their life all throughout.

Arthur: And I think that, you know, I think that I love that they use the word like movement, because it is and it's moving. It's constantly moving. And we still, like you said, you have to keep up to date on things and make sure that the resources are there again.

And that brings me back to my childhood and growing into an adult with a disability of of spina bifida. I lived close to the Philadelphia area. There's a great children's hospital here that has a spina bifida clinic that specializes in children with spinal bifida.

But as I was reaching adulthood, it was just like, Do I still keep going to the children's hospital or do I move over to one of the other hospitals in Philadelphia? Do I have to go out of, you know, out of this area to find care as an adult? So it's, you know, just keeping up to date on on all of the things related to disabilities in the medical world and, in other areas as well.

It's so important because we are adults with disabilities is living life. So it's so important to have those resources available.

Heather: Indeed, like the continuum of supports, the advocacy, it's important that at every school where services are delivered and offered that there's as much knowledge about advocacy, about the disability rights movement, because it's the individuals that we're interfacing with, like somebody from DVRS, or DDD, that they are as committed to the understanding about this journey for an individual disability and are looking for the least restrictive environment for the most effective model guaranteeing an individual with a disability who is now an adult.

I have found that there are some differences in that understanding. When somebody hits 21 and not every organization or institution we're working with is as inclusion focused as somewhere we came and I realized that we're going to continue on in this journey and our voices need to be heard. Now it's beyond education. It's beyond the school day. It's all about making sure that the resources available for individual disabilities are inclusion focused.

Arthur: Yes, So important. And the second part of your presenting an IT focused on person first language. So can you share a little bit about what person first language is? And then there's also identity first language. Can you talk about the difference between the two and some people prefer one or the other or, you know, a mixture of the of the two.

So can you talk a little bit about that?

Heather: Absolutely. I and so I think that person first language where we are today and language changes so we always have to keep on the pulse of what is really researched and what we're advocating at current time. But what I understand with person first language is that it's typically a very a appropriate space from which to think because you're looking at the person and you are not driving your dialog with that individual based on what you see and perceive as important at the time.

So when you put person first language with disability together, instead of thinking that this is the Down syndrome person or Down syndrome child or autistic man, you are saying it is the person. And if you want to include the qualifier with Down's syndrome or with an intellectual disability, the person therefore becomes more important and you're allowing them time to tell you what's valuable to them and how you should be addressing them.

And I think that that's tremendously important because when you decide to use the qualifier that is most relevant to you, in this case, the disability, you risk just interfacing with that person based on what you think is important to them. So they're thinking, I'm approaching you on some equal playing and I'm interested in talking to you because we both just saw the same movie or we're taking the same class together.

And so now that individual has to overcome the hurdle of recognizing that you're not there to relate to them for that you're there to relate to them through their disability, and that might not be at the forefront of their mind at that point. So person first language is acknowledging the person first and including the qualifier of disability after.

Heather: Identity, first language is putting, you know, for the individual with a disability, it's putting their disability first.

So I think for those who use identity first language, they have a very enriched understanding as to why they do that. But for me, and just if I'm doing it and speaking for disability, what I understand through the research I do is that in the moment that they are putting it, that is something very important to them. That is something that they identify with.

They might be discussing that using identity language. I am a Down syndrome woman because that might be an advocacy piece for them. It might be something that they're celebrating. It might be something that they want to put into the arena of discussion and they want you to acknowledge. So we have to honor first what the person really wants in this case with us and how they want to be termed.

So again, it goes back to that person, and putting the person in the driver's seat. It's saying, I want you to see me for this particular quality or characteristic. It's what I'm coming to the table with this interaction we're going to have together is going to be given by certain points.

Heather: So I think that it just depends on the individual of what's valuable in the moment, and I don't it should be one or the other. I think that for me, if I would rather wait, who told what's important to that person? Identify with them through that lens. And until then, I can just appreciate their personhood as I'm experiencing it. So I guess I would assume in looking at a person, my own daughter who engages with it, it's very fluid.

There are times that she just wants to be Nadia in multiple definitions, and there are times that she'd like to think about and refer to her disability and have us engage in that conversation. So I respect whatever whatever is important to her in that moment, as I would for any other individual.

Arthur: Yes. And it's the most important part, I feel, is to ask that person, how they want to be identified and referred to. Because for some people, as you've putting their disability first, their identity first language it's very personal and, you know, very important to them. And then for others, it's just as you said I want to relate to you as we just saw the same movie or, you know, we watch the same TV show or went to the same concert or something like that.

And that is so true. And I always I always tried to ask people, you know, what is what is your story? Instead of saying something like what happened to you or what's wrong with you, you know, it's like it's that same thing. Like you're you want to know about the person and what they choose to tell you.

So they're sharing what their story is. It's, you know, what you'll find out about them. And yeah, so it's really important how you address things.

Heather: You said something interesting, like you framed something some way, like what happened to you. That at times when we want to know about the disability we we used, we presented as like a deficit focused question, like why are you afflicted by this or, you know, like you said, what happened or what are you suffering from?

You’re imposing on the dynamic that it is a negative experience, that someone is afflicted or something happened, which is this sense of is it bad? If you're asking someone to share their story, you have to accept that the narrative around their story is very much their own. And is a positive experience, whether they live it day in and day out.

And you have to be participating on their terms and not with the connotation you want to inflict upon it.

Arthur: Yes. Yeah, that's so true. And that we see it on the news. We see it in print, in stories. You know, this person's suffering with a certain disability, no, they are just iving life. And they might have some hard days and everybody has a hard day.

And every now and again, you know, it's like my life, yeah, I have bad days and so does everybody else. You know, I'm not suffering with this kind of effort. I live with it. Yes, I have it. You know, it prevents me from doing certain things or I have to do certain things differently, you know? But I manage.

I adapt just like everybody else with whatever their challenge may be on a particular day. You know, we're resilient people. We are adapt to what we need to and make life happen in our own particular ways, individually, just as everyone else. So that is, you know, it's so important to have these conversations and to always refer to the person themself and ask them, how it is they want to address their disability because they might not want to, they may not want to.

Heather: And getting and having in a place to where you're addressing them outside of the disability, that we can see people not our own biases towards that and whatever has informed that.

So, I think that it's important that we continue to also educate in the history of the disability movement and really infuse that into all of our understandings on the experience of people.

Because the more we educate all people, the better off everybody becomes.

Heather: Yes, I have just one final question, and it's something that I'm asking all of our guests are in the more recent episodes, and that is, can you share a few resources with our listeners that relate to either person first identity or first language or the disability rights movement.

It can be a book, movie, website or anything, A book that I keep on hand all the time is claiming Disability by Sammy Linton

I used it in my doctoral studies. I refer to it now when I'm doing research for professionals. developmentI'm writing. I think it's it was helpful as a professional, but also helpful as a parent. And so I think it alludes to the disability rights movement, to experiences in all public spheres and in schools. So I think it's it's really great to have it's nice to have some really well researched pieces that look at all aspects of society, including school, because sometimes I think people get into the box like there's special ed, and then there's Gen-ed life and it's no, everything is really informed.

And when we're thinking about the individual, we're thinking about what their civil rights are. In that moment, no matter who they are. And so I think claiming disability is a great book for that. And I also like it because the title resonates for me. I go back to again being a young woman, welcoming a person into the world, and this person had a uniqueness, something that I celebrated, but I recognize others did not celebrate.

And I wrote about at the time in college, I was still in college as I'm about reclaiming my pregnancy, and it was important that I took ownership back of her life and gave it the celebration. It was deserving of because she is a was a person who was going to come into this world and affect and change and make her own mark and I wanted to make sure that I started that advocacy earlier.

Heather: So I went through a process of claiming it back and and and she has done amazing things. She doesn't fail. She really represents who she is as a person. Our family continues to represent a diversity that we value. And I recognize that it's because we're part of a world of people who have meaning. And so we should always be looking to help any person around us and acknowledge who they are that in ways that is meaningful for them.

So, you know, this is a really great research book and it resonates personally for me. So I hope it can help others.

Arthur: Yes. And it's so funny. I always have that question and I'm saying, you know, oh, and this is for our listeners. And I'm like, No, it's really for me too. I like I like finding new books.

I haven't heard of that book, so I will definitely be adding it to my list of my personal list. So again, thank you so much for for that. And thank you so much for taking the time to have this conversation. I really enjoyed the conversation and having a chance to catch up with you.

We talked briefly at the conference, but to have conversation with you and to hear more of your story and your passion for inclusion and just to make sure that the disability community is part of the conversation and education is so important.

So thank you so much for your time today to have this conversation.

Heather: Thank you, Arthur. And thank you for allowing me to also represent somebody who has a perpetual lens towards this topic, but also a personal one at that. It was nice to reflect and thank you for giving me the forum to do that. Arthur It was lovely.

Arthur: Yes. Oh, great. I'm glad. Yes. And it is so important, you know, to add in your personal, the personal piece of it. I think that is really, really special and so important to share. So thank you so much.

Heather: All right. You soon have a good one.

Arthur: You too. Thank you.