Disability Talks: Don't Dis My Ability
Disability Talks: Don't Dis My Ability
Allies & Obstacles- Building Social and Cultural Capital
This week, Disability Talks sits down with the authors of Allies & Obstacles to discuss the importance of advocacy and collaboration for persons with disabilities. This process should begin from an early age to ensure independent success and a wide variety of supports that are long term. Listen in to find out how to bridge gaps and build success.
Richard Scotch- richard.scotch@utdallas.edu
Allison Carey - ACCare@ship.edu
Pamela Block - pblock@uwo.ca
Want to be a guest on our show? Connect with us at:
Website
Facebook
LinkedIn
X
Instagram
Welcome to DisAbility Talks, a podcast produced by Abilities in Motion. I'm your host, Shelly Houser. Join us for real conversations, and no nonsense talk from everyday people with disabilities living their most independent everyday lives. Tune in for the latest news surrounding disability, accessibility and independence. Where conversations aren't dissed, and stories that need to be told aren't missed. So let's talk!
Shelly:Good morning, everyone. And I am your host Shelly Houser. And thanks coming back to DisAbility Talks. In 2020, Allison C arey, Pamela Block, and Richard Scott released their latest book, Allies and Obstacles- Disability, Activism, and Parents of Children with Disabilities. These co-authors have a long history i n disability studies and penned this book to break down f our different disability groups. Allies and Obstacles looks at the history of the a uthor's work, parental advocacy through the decades and their complex relationships with disability activists, they take a deep dive into various case studies and the impact institutions and professionals have over parents with disabled children. The authors are here today to tell us more. Welcome everybody. Pleasure to have you on the show.
RIchard:Nice to be with you.
Allison:Thank you so much for having us.
Pam:Thank you.
Shelly:Thank you. Thanks for being here. So starting with maybe Richard, can each one of you introduce yourselves and tell us where you're from and a little bit about your background?
RIchard:Sure. I'm currently on the faculty at the University of Texas at Dallas, or since the early 1980s, I first started studying disability rights issues and in the 1970s for my doctoral dissertation. And have been doing it ever since and have known for over 20 years, the same meetings and we've collaborated on different projects, but, uh, that's, that's me.
Allison:I'm Allison Carey. I am faculty at Shippensburg university. I'm a sociologist. My family I'm a sibling of somebody with a disability. And so I was raised attending functions for the Arc, doing a pretty traditional charity model of disability politics. And when I went to graduate school, I was exposed to the disability rights movement and self-advocacy, u h, and got involved in disability studies from, from there.
Pam:And I'm Pamela Block. U h, right now I'm a professor in the Anthropology department at Western University. U m, most of my career I've actually worked in a m ultidisciplinary applied health school. So it's recent for me. U m, the move. I, u m, u h, also a sibling, my mother and my Aunt were Special Ed teachers. My mom was an incredible activist and ally, my sister also, y ou k now, sort of driving the activism actually, and they kind of educated me. And, u h, I've been involved in disability studies for, u h, since the 1990s with a social sciences approach. And I've known, u m, Allison and Richard a nd sociology. And I have many colleagues in anthropology as well that I've worked with for many years.
Shelly:Very interesting. So thank you very much for that background. It is quite diverse and it is a deep dive into everything that you do. How is it that you guys, I know you said you were at the same meetings and stuff, but how did you guys just sit down one day and decide that this was the kind of book you wanted to write? How'd you come together for this?
RIchard:Well, that evolved over a period of time. Uh, Allison and I started talking about this as a possibility about 10 years ago. She had come out with this really terrific book that was a history of issues, affecting people with intellectual disabilities and different policies and advocacy done extensive research already on parents had also looked at disability rights. But I was involved with a project where I was doing a lot of research to write entries on a number of the disability organizations, including some of the parents' organizations. One, I noticed that it was, there was a lot of parallels and interesting connections. And number two, no one had done a lot of scholarship on this from a disability studies perspective. So Allison and I started talking and before long, we brought Pam, who's done a lot of work on parents and activists, particularly related to autism. So the three of us started talking about how we wanted to do this. And we wrote a proposal and shopped it around to publishers and started doing the work. And there you go. It only took about 10 years, which is pretty fast in academic time.
Shelly:Very good. Who was this book written for? And what do you hope that this book accomplishes for the community?
Allison:So the book is written as in some ways an academic book, we do want to think about the history theories contribute to the disability studies scholarship, but we did attempt and hopefully succeeded in making it accessible for parents, for activists, with disabilities, for a broader audience. The second part of the book compares and contrasts these histories to think about why parents came together with disabled activists, how that happened when that hasn't happened, what the key conflicts have been. So for me, I think the book has really important, both academic and real life contributions to make. And so we really wanted to study that and we wanted to study it across populations, across disability groups, because the histories are really different. And the factors are really different if you're talking about developmental disabilities, where parents are raising children. And so their parent roles and identities are tied to disability versus something like mental illness, where that might be acquired when somebody is an adult. And then the role of the parent is really different politically. And for our personal lives, just in disability activism, we have seen the power of collaboration and we have seen how devastating it can be when parents and activists are in conflict with each other. Right. And so, so we really also wanted to create room for discussions. Some parents are so in their own movement, they don't even know much about the disability rights movement.
Shelly:And that's, you're talking about the independent living movement that was started by Justin Dart and Ed Roberts and Judy Huemann. And that is the overall matriarchs and patriarchs of that movement, which is what we do here at our center for independent living.
RIchard:And this is not unique to people with disabilities and their parents. There's a lot of families have tension where adolescents and young adults in particular wants to be more independent and that makes parents nervous. And so there is often conflict and tension.
Shelly:Do you think that this perinatal mindset of protecting their child with a disability is, is in the same vein or same tone as what's going on with Brittany Spears right now? And her guardianship with her father?
Allison:There are a lot of parallels, right? Much of what we discussed is about parents seeking parent authority and parents have fought really hard over time to have their authority, their own expertise respected. So parents do need to have some control and authority over, um, decision-making within their family, but then when parent authority becomes the centerpiece of the activism and there aren't ways for the disabled person to become their own empowered individual to be supported without necessarily being controlled, then yeah. Then we absolutely get into situations where somebody has to fight and that fight really difficult because they have been declared incompetent.
Pam:That's a very good question. Um, as I said earlier, when you look across the lifespan, the role of the parents are shifting over time. And hopefully by the time we get into adulthood, as Allison pointed out, the parents are, are backing off from control and focusing more on support and encouraging people to, um, make choices. But I think it's also really important for parents to educate themselves and family members when once parents are gone to full and support people, to make sure that they know what their options are. And also, you know, what the negative and positive consequences of the different choices are. And, um, hopefully, you know, have a lot of practice with this so that, you know, there's not an abrupt, u h, traumatic transition over time. Right. And so, u m, you know, parents, I think are actively engaged in imagining a good future for their kids without them. And hopefully though they're also actively planning and not just in terms of finances, although finances absolutely help, but they're not that that's not necessary. It's about building relationships with support systems outside the family, with organizations, with, u m, other families with, with, you know, friendships so that, you know, living situations, u m, you know, evolve in a healthy way so that people have the choice of who they live with o ver t ime. You know, so this is not the work of abrupt transition. This is something that should be thought of and plan for an enacted on, you know, over, u h, across adulthood, across the child's adulthood.
Shelly:So what does advocacy look like for these families? And is it just a matter of setting goals and services, or is it actually more than that?
RIchard:Well, I think there's a lot of variation, different, certainly in different historical periods, the nature of advocacy has been quite different. So in the fifties, a lot of the parents groups were doing what American citizens do. They were lobbying officials and writing letters and conducting public campaigns, uh, in the sixties. A lot of the parent groups were involved with, uh, legal advocacy work has looked at some of it in Pennsylvania. Some of the parents are groups that challenge policies, aren't institutionalization, for example. And later on parents to some extent were involved in protest, but not only has there been historical variation, but there's also differences within the different types of disabling conditions. So some parents tend to be a little more working within the system and others tend to be more inclined toward protests.
Shelly:Often parents with children with disabilities want to hold onto their children forever. And we know that however, eventually parents pass on. And then what, and I think this is the importance of self-empowerment. We must plan for our children's future now to ensure that they're set for ongoing care later in life. So how can parents educate themselves to encourage their children to create their own independent living model?
Allison:So the social model argues that the negative consequences of disability, the disability itself is largely produced by environmental factors. So as an example, somebody with an intellectual disability in school, because of biology, they may have different ways of learning. They may learn some things more slowly, right? And that may be biological. But in terms of the social model, there are environmental factors that limit that child. So the social model pushes us to think about ways that we can reform or alter the environment to ensure that people with disabilities are included, empowered, given access, right? That they have the rights to, to be a part of society. Social capital is the idea that our relationships matter in a lot of ways. So for example, the idea of rights, if you have rights on paper, right? Somebody signs off on the ADA, those rights are only important to other people will listen to you. If people will accommodate you. If people recognize that you have rights, so it gets translated in relationships. And so you need to build those relationships and you need to be in them. If you don't get to leave your house, if you don't have these opportunities to interact with people, rights on the books, don't get translated into actual changes in your lived experience. There are other ways that social capital is really important. People with disabilities, like all people want meaningful relationships. And so the people, right, we need, again, access to people and opportunities to build our knowledge about sexuality, our, um, how our opportunities to build real meaningful relationships. But what we find over and over again is one of the most important factors to protecting people from violence is actually building their social capital. If you have friends in school and particularly friends across the disability ability spectrum, then those friends will stick up for you in adult relationships. The more people you know, and this is not disability specific, right? The more protected you are from domestic violence. So it is actually really essential to the well being of people that we have a wide array of relationships. So how do you build those? Again? It starts super early. I think it is important for kids with disabilities to have relationships, both with other kids with disabilities and kids without disabilities. I am a fan in general of inclusive education. I think it's important that kids get as many opportunities to interact with a wide variety of kids. Uh, but people with disabilities tend to have their social network dominated by family and people in paid positions and in intellectual disability and developmental disability. Often those people have a lot of power. It's a hierarchical relationship, right? The agency makes a lot of decisions for those people. And then their staff part of the job of the staff is to help them build those relationships. I, uh, worked for the arc for a little while, and it was not in my kind of job description to help people who were adults who lived in the community. Right. I had this woman who wanted me to help her find a boyfriend that was not allowed to be put on her plan, but she was an adult yet. We somehow weren't supposed to talk about that. So I think the whole service system really needs to shift its orientation to recognize that people need, want and benefit from full lives.
Pam:Uh, so this is, um, not dependent on what your, your ability to talk or not talk or your, you know, what, what your support needs have, uh, you know, the level of support that you might need. I mean, my sister, I can see Hope doing this in a, in a very subtle and astute way. Um, she's, non-speaking autistic woman who, when you walk around town, people will say, hi, hope. I mean, you know, people that I don't know that Hope has been in that community for her whole life and has a range of, of relationships shows a lot of sophistication in the way that she interacts with people and it doesn't require language, right? She can show gratitude, she can express humor, you know? So these skills are things that aren't reliant on. Um, you know, your, your, they absolutely are relying on your ability to communicate, but not necessarily communicate via speaking.
RIchard:And let me just build on one of Pam's points. I think if you're part of a community, then you are not tracing these struggles or these issues isolated as a single family, you're dealing with it with people who can provide you with ideas, who can provide you with support, uh, sometimes can provide you with resources. So dealing with us as a community, uh, what we sociologist called social capital really makes it a lot more possible for families to cope with these challenges successfully.
Shelly:And I think as a parent with my own disability, for me to remember this conversation, I think it's essential for parents sooner rather than later, to learn these empowerment skills for themselves, as well as their children and give their, their child with a disability, the best possible life they can help them create. I think with that, we're going to take a short commercial break and we'll be back with DisabilityTalks.
Commercial:Abilities in Motion is a Pennsylvania based nonprofit organization dedicated to helping individuals with disabilities live their lives on their own terms, Abilities in Motions, strives to eliminate psychological stereotypes, physical barriers, and outdated attitudes that prevent social and civic inclusion, as well as promote the independent living movement to empower, educate, and advocate for individuals with disabilities. For more information about programs and services, abilities, emotion provides call 6 1 0-3 7 6-0 0 1 0, or visit our website at www.abilitiesandmotion.org.
Shelly:Welcome back folks. And this is DisAbility Talks talking to the authors of Allies and Obstacles. So why is the language that we use regarding persons with disabilities so important?
Allison:So this is, uh, always a fun question to put to my students. I will, I'll put up a slide and say, so, um, people first or disability first, which one is right? And usually the majority of people say, oh, people first people first, because they understand that that disabled people are often dehumanized. So they understand that it's important. And then I try to tell them that, you know, it's actually more complicated than that, that indeed there are disabled individuals and even disability groups who prefer the people first language, but that's not the case. All along, you, you're addressing a large number of people and there's going to be some people that prefer people first and some people that preferred disability first, and the reason that some people prefer disability first is that it implies community and connection, right? That it's really an activist stance. That it's a pride based. But I think the most important thing when you're a non-disabled person, you know, inter interacting in some way, whether it's with an individual or a group of people, you need to find out what their, how they prefer to be referred to. And, um, and try to respect that as much as possible. You know, some people choose to sort of use the two ways interchangeably out of respect for the variety, but it's very, very, it's always very, very important to consider.
RIchard:And if I could jump in here for a minute, um, there's a concept related to social capital. We call cultural capital. You know, sometimes when we're looking at jobs, we talked about soft skills. How do you talk to someone? How do you interview, how do you handle a certain kinds of situations? There are all kinds of soft skills that are involved in living independently. And it's not always the case that service providers or even parents can provide those skills. You're more likely to get them from peers than you are from people who are in this hierarchal relationship or who have maybe different priorities, maybe protection over independence. So as people interact with their peers, as they're involved with independent living centers, as they're involved with self-advocacy organizations, they can, are much more likely to develop the skills about, you know, how do you invite ask somebody out on a date? Or how do you deal with a personal carer who is not treating you appropriately? Or how do you talk to your parents about wanting to live on your own? You know, these are things that often peers, uh, and people who also who have similar disabilities or similar challenges are able to contribute in ways that others cannot. Yeah.
Shelly:So you guys broke this book down into sections that cover four different types of disabilities. How did you come to choose these four types? And tell us more about the importance of each one of these sections.
Allison:We wanted the chapters to reflect different histories, different issues. So we wanted some of the populations that are most commonly discussed in terms of parent activism that have some of the largest or most powerful parent organizations on a national level. So we'll, we'll each talk to our separate chapters. Two are distinct chapters. The first case is intellectual and developmental disability. And that's my area of study. Parents of children with intellectual and developmental disabilities were some of the earliest parents to organize. And so their history dates back a long time. And so we can see from that case on the one hand, the really important role of parent activism in disability rights, the parents helped fight to reform institutions to at times close institutions, they played a pivotal role in securing the right to education. We can also see the shift from parents thinking just about kind of services to moving towards what we call a rights model, using the language of rights using the courts to defend rights. So parents in that community, they have been able to collaborate pretty successfully with organizations led by people with disabilities. So there's a lot of Alliance between organizations. So I think that's really important to see too. And the arc has worked towards supporting self-advocacy, but even there, there are still a lot of tensions. And so the arc is also a service provider and the degree to which they respect the autonomy of their own consumers issues around sexuality, try to build cultural capital, right? Those are, those are in questions. Sometimes the arc runs a lot of largely disability specific rather than integrated and inclusive programming. So, so we can see in that case study this transformation towards rights, that Alliance, but the tensions that continue to affect parents and activists with disabilities, and then Pam focused on autism. Pam, do you want to talk about your section?
Pam:Yes. Now that's a really interesting, um, history, right? Because it's, uh, uh, you know, autistic activism has emerged in the 21st century. Autism Now received other diagnoses such as mental retardation for which there were known treatments and, and, and, uh, a positive, a known positive trajectory. There's also a strategic aspect where, um, diagnoses sometimes follow the money in that if there's funding available for certain conditions like right now, because of very successful lobbying efforts of parents, there's a lot of funding for different kinds of supports for autistic children. So now the controversy comes up in that some of these so-called supports, um, were not experienced as supportive by the autistic people. And as they grew into adulthood, they started to express their dissatisfaction with certain interventions, such as applied behavioral analysis, ABA, and even the sort of mildest version of a VA is, is perceived by many people as oppressive and a kind of surveillance that, um, is, is very controlling. So what we've seen also is the emergence of, uh, internet discourse on these issues in social media and in blogs. And you see parallel the development of communities for parents of autistic children and, um, and autistic adults saying very different things. And then they began to read each other's works and conflict resulted because, you know, there were extreme differences because think about the pressures that the parents are facing right now, right? So they're trying to navigate do what's best for their kids. You know, who should they listen to the professionals, the clinicians, should they be listening to other parents, or should they be listening to activists? You know, it's very confusing, but from the activists, they're very frustrated because they're saying we lived this, this was our lives, and this is what we're telling you. It was like, why aren't you listening to us? And then they're being invalidated when parents are saying, oh, because the parents can't imagine a future for their kids. And, um, but over time sometimes, you know, as the children emerge into adulthood, parents can sometimes, especially if they are thoughtfully listening rather than, you know, being very closed, there can be a dialogue and there have been, you know, the, the opportunities, um, of the internet is, you know, it really has enhanced the potential for dialogue, not just conflict. So, and that's really, as, as Alison said earlier, what we are trying to also accomplish with this book book, you know, so that people can really start to see in a thoughtful and like, non-threatening way, you know, what the different views are. Um, Richard,
RIchard:Uh, well, I actually did two of the case studies. The first was on physical disabilities, which of course is a very broad catchall. And I was particularly interested in how some of these early groups, uh, advocating for kids with complex medical situations or with cerebral palsy or other, uh, physical conditions where some of the earliest groups. So looking at how they organized, I think it was important to historically, but also there's been attention. Uh, and we try to get into this and other parts of the book as well, between what the goals of these current organizations were. So, uh, there have been debates over telethons and fundraising and poster children, and how people are depicted and whether the disability is seen as a difference, or whether it's seen as a tragedy that has to be prevented so that those were some of the issues. And in that case study, the other one I did was related to psychiatric disabilities. And I, uh, have been interested in that a long time, but at the time we were working on the book, I was involved with, uh, the public mental health system here in north Texas. Some, uh, psychiatric disabilities often don't manifest themselves until adolescents or young adulthood. So the parent groups, there are a little different in that they form, uh, with teenagers and adults. And so some of the tensions over control and autonomy, uh, been a lot of debate. There, there are some of the parents' groups have been, uh, that this all kind of came to a hat, I think in a little later than some of these other groups. Uh, but there were self advocates in the psychiatric, the disabled community who were basically saying there is no mental illness. There were parents who were desperately trying to take care of their, their kids, trying to impose legal, uh, restrictions by trying to put them onto their secure, the under the supervision of courts in order to force them to be medicated. And so there was a lot of interesting aspects of this, as well as I think it's a very important disability. And certainly one that we've paid a lot of attention to lightly, uh, you know, there are stigmas associated with all of these conditions, but the stigma of mental illness continues to be very important.
Shelly:And I think maybe that's because we don't see some of these disabilities and the internal invisible disabilities, like mental health are intangible and harder to see. Therefore I've had discussions before where the stigma of mental health is often, especially in the BiPOC, you know, persons of color community, it's, it's more difficult and way less accepted and talked about. And it's more of a challenge for those communities.
RIchard:Sure. And it's, it's, you know, parents don't want to acknowledge it. Or parents in some cases really embrace parent advocates really embrace the medical model because the alternative is the kind of situation Pam was talking about with, with people on the autism spectrum. You're mentally ill because you had, your parents were no good at being parents and it's their fault as opposed to this is some kind of biochemical neurological condition. So to some extent, parent groups have aligned themselves with pharmaceutical companies, very questionable ways to promote a medication, as opposed to some of these more psychosocial approaches to mental illness. There are some currently some big fights in a lot of states. And to some extent, nationally over whether adults should be, or can be treated in voluntarily, whether, uh, parents can get the right to dictate treatments for their children against the wishes of their children as a whole, uh, deinstitutionalization movement, establish the right to live on your own and make decisions on your own. But a lot of parent advocates have fought against that because they see their adult children not leaving lives. They would want them to lead in some cases leading very difficult lives on the streets, for example, experiencing homelessness. So there's a lot of conflict there.
Shelly:Well, one last question, where can our listeners connect with all of you and purchase this book and find out more about this book?
Allison:To find out more about the book they can go to temple university press online. So that's TU press dot temple.edu. And if they search for Allies and Obstacles, they can find a sample chapter and an abstract and ways to order. They can also order it. Um, you know, typical booksellers online, Amazon Barnes and Noble. You're unlikely to walk into a physical Barnes and Noble and find it on the shelf since it is an academic kind of book, um, for contacting us, we are at our individual institutions. Uh, Shelly, would you like us to provide email addresses? Or
Shelly:What we'll do is if you tell us again where each university you're from, I will in the description of the show, put the email addresses in there and attach them that way. Our viewers can find them easier. So Allison, which university are you from? Again?
Allison:I met Shippensburg university in Pennsylvania.
Shelly:Okay. And Pamela
Pam:I'm at Western university in London, Ontario, Canada. And I also wanted to point out another pathway to get the book is to request that your library purchase either a paper copy or a digital copy.
RIchard:And I'm at the university of Texas at Dallas. And, uh, I would also mention that at least at the time we're recording this, that there's a discount code. If you order through temple university, press all caps allies, 2021, A L L I E S 2 0 2 1, and you get a 20% discount off of list price,
Shelly:And I will provide all of those emails and links in the description to our show. Well, that is our show for today. And thank you so much for Richard, Pamela and Alison for coming on for this intellectual conversation that is so needed. Thank you everyone. I appreciate your time.
RIchard:Thank You for inviting us.
Allison:Thank you, Shelly.
Shelly:Yes. And to my listeners. Thanks for listening. You want to connect with us? We can be reached@infoatabilitiesinmotion.org, and don't forget to hit that like and subscribe button. So you never miss an opportunity to listen to DisAbility Talks.
Outro:Thanks for tuning in to this episode of Disability Talks, want to keep the conversation going? Then visit our website at abilitiesinmotion.org or connect with us on social media. And remember don't dis my ability.