Transcript Book Talk Allies and Obstacles: Disability Activism and Parents of Children with Disabilities *note on the timestamp, to match the transcript with the video, use the last 4 numbers. 10 represents 10am, followed by the minutes, followed by the seconds. Panel 1: The Authors of the Book Speakers: [Kate Fialkowski] Kate Fialkowski, Institute on Disabilities [Sally Gould-Taylor]Sally Gould-Taylor, Exec. Dir, Institute on Disabilities [Allison Carey]Allison Carey, professor in the Department of Sociology at Shippensburg University [Pam Block]Pam Block who is a professor of anthropology at Western University [Richard Scotch]Richard Scotch, professor of Sociology and Public Policy at the University of Texas, Dallas [Kate Fialkowski] 10:02:02Hi everyone, we're just waiting another minute for people to flow in thank you for waiting. 10:03:22 Good morning everyone. Sally Are you there. 10:03:28 [Sally Gould-Taylor]Yeah, this is Sally, can you hear me. 10:03:30 [Kate Fialkowski]Yep can hear you. Great. Thank you. [Sally Gould-Taylor] 10:03:35 Great. Um, I wanted to go ahead and introduce everyone, and welcome everyone to our mini course lecture series so my name is Sally will Taylor, and I am the Executive Director of the Institute on Disabilities at Temple University in the College of Education 10:03:54 and Human Development. 10:03:56 For those of you who don't know, we're the University Center for Excellence and developmental disabilities for the state of Pennsylvania. 10:04:03 And I'm delighted to welcome you to this mini course lecture series. 10:04:08 We're opening today's session, which is not really a lecture, right it's a conversation among the authors of a book, and then some great disability advocates. 10:04:18 Today we're bringing you two panels of speakers, talking about a new book that was published by Temple University Press called Disability Activism and Parents of Children with Disabilities. 10:04:29 We have two panels of speakers today. The one starting soon, was the panel with the three authors of the book, Alison, Pam and Richard. And the second panel which starts in about an hour, a panel of three disability activists, including Pennsylvania's 10:04:45 pioneering disability activist, Debbie Robinson. We hope that you can stay tuned for both panels this morning. 10:04:52 We're really excited to hear more and learn more about the book and hear what the panelists have to say. So at this point I'm going to turn the mic over to Kate Fialkowski our Director of academic programs at the Institute, who will moderate the webinar as 10:05:06 well as introduce the panelists, and the authors, but thanks everyone for being here and I look forward to spending a great morning together. [Kate Fialkowski] 10:05:19 Sally thank you so much for your introduction. 10:05:23 And I want to congratulate Sally on her new position as the executive director at the Institute on Disabilities. Congratulations Sally. 10:05:34 As Sally said my name is Kate, and I want to welcome you to this morning's book talk Allies and Obstacles: Disability Activism and Parents of Children with Disabilities. 10:05:46 I'm going to take just a few minutes for some important information about this webinar, and then we'll move on to the panelists. 10:05:56 I want to let you know that this webinar has live transcriptions, so if you want to view the transcriptions, there's a little CC on the bottom of your screen and you can show subtitles. 10:06:12 This webinar is also being recorded and transcript, and after the event we will make it publicly available. 10:06:22 All attendees of this receive a discount code for 30% off of the book and the link for this, and the code, are coming up in the chat. We'll also supply this to you after the event in an email with all the links and all the relevant information 10:06:46 About the format of this event... so we're going to have a panel of speakers, and they'll talk first and then we'll be collecting some questions at the end of the event will be using the Q and A feature, and hopefully the A and A feature is working I can't tell from my side. 10:07:03 And at the end of the event we'll also allow people to speak so you should be able to raise your hand at the end of the event if we have people who'd rather ask their question live. Our our first panel will go until 11am. 10:07:18 And it includes the authors of the book, and I'm really pleased to introduce them, and we give a warm welcome to them. And I'm going to try to bring them up in in the spotlight so everyone can see them so hopefully I will go away and you will see them. 10:07:35 Just one second. 10:07:38 I want to welcome. 10:07:41 Allison Carey, and Allison is a professor in the Department of Sociology at Shippensburg University. 10:07:51 I want to also welcome Pam Block who is a professor of anthropology at Western University. 10:08:00 And I also want to welcome Richard Scotch professor of Sociology and Public Policy at the University of Texas, Dallas. Now Richard, I understand you're speaking first. 10:08:13 Thanks everybody for joining. Thanks to everybody who are listening in to this webinar, we really appreciate you being here, and Richard I'm turning the mic over to you. [Richard Scotch] 10:08:25 Thanks Kate, and thanks to everybody at the Institute for setting this up and giving us an opportunity to talk about our book Allies and Obstacles. 10:08:34 We got involved with this number of years ago. All of us have been involved as as disability studies scholars in studying advocacy groups that work in the disability area. 10:08:51 And we have all been interested in parent groups on one of the things that came out of that is how parent groups interact with self advocates in disability and how those parent groups came about. 10:09:10 And to what extent parents have been allies to self advocates as they have been. 10:09:21 But to some extent they have also worked for different objectives and perhaps have even served as obstacles in some instances, so our work is trying to explore these two different movements and how they relate to one another, but in particular to bring out some, some of the history and some of the issues facing parent advocates. 10:09:42 So we know that children who have disabilities have often been denied access to public education to community based services, and have really been marginalized in society. 10:09:56 And this includes children with intellectual disabilities developmental disabilities, as well as children with a variety of physical disabilities including those with complicated medical conditions that affect functioning and and the way we've responded 10:10:14 to these children as a society, historically has been dominated by what we might call professional gatekeepers by physicians by scientists by educators and to some extent parents were encouraged through much of the 20th century at least to basically leave 10:10:36 things up to the experts, and in particular to rely on state institutions as sources of care. 10:10:46 But this began to change in the period after World War Two. 10:10:51 As the country was growing. After the war, as there was geographic spread to the suburbs, as there was a return of women from the workforce to family, as, as, After the demobilization. 10:11:10 There was this increased emphasis on women's role role in the home and in the family. 10:11:16 And so the issue of education became much more highlighted in American society. 10:11:24 But this was also a time when social movements were active. 10:11:29 Were mobilizing and active, in particular the black civil rights movement which challenge the status quo, and also emphasize the importance of education to being a part of modern society. 10:11:43 This was also a period where Americans became more skeptical about these large state institutions that we had been assured were doing the best for our children. 10:11:58 And so, in this period in the late 1940s and the 50s and continuing on. 10:12:05 Parents began to try to get better services in their own communities for their children who have disabilities. And at the outset, this was primarily parents who were white, who are upper middle class, who had the privileges and social capital that is associated with their social position. 10:12:31 And they tried to use those resources they had to promote more inclusive public schools that would include their children, and that would actually provide educational services for their children, rather than simply a custodial place for them to be. 10:12:48 And so as these parents began to meet up with each other. They formed local organizations. 10:12:57 They began to challenge some of the prevailing scientific medical professional doctrines about how children with disabilities ought to be ought to be educated or ought to where they ought to receive their services. 10:13:18 And they formed local organizations that ultimately coalesced into some national organizations, many of which were centered here in Pennsylvania, and in the Philadelphia area. 10:13:32 So, these parents adopted a number of strategies in their advocacy. 10:13:41 In some cases, they emphasize the tragedy of disabling conditions and and try to promote prevention. 10:13:54 I put that tragedy in quotes but that was what they emphasized in our communications. In other cases, they start to reduce the stigma associated with disability and to highlight the fact that commonalities that children with disabilities had with other children and to promote acceptance of disability in public schools and in the larger community. 10:14:22 So these parent groups started with informal kinds of lobbying. 10:14:28 They moved on to more vigorous political activities to encourage public officials to change local policies, they engage in fundraising, to try to support both research into the conditions that they were where their focus, but also to support their advocacy. 10:14:53 And ultimately, when things were slow and changing and responding to what they were seeking some of these parent groups, took on lawsuits to force local schools to provide access to their children and to reform or even close large state institutions, many of which had become dysfunctional. And really, in many ways, horrific places for anyone to to exist within. 10:15:29 Um, but one of the distinctive aspects of parent advocates, was that they tended to engage in these more mainstream forms of politics of lobbying of letter writing of legal advocacy, but unlike the self advocates parents rarely engaged in in protests. 10:15:52 In contrast, disability advocates, particularly as we get into the 1960s a little later, have been very vigorous and promoting their own participation in society and advocating for inclusion. 10:16:10 And we're engaged in a number of political protests as well as the kind of lobbying and legal action that I mentioned, for the parents. So, in the 1960s disability activists, organize the engaged in protests, they engaged in public education campaigns 10:16:32 to challenge segregation and exclusion, and to challenge some of the negative stereotypes. 10:16:41 So I will close this introduction and turn things over to my colleague, Allison Carey, who will continue talking about our work. [Allison Carey] 10:16:53 Thanks, Richard. 10:16:54 So building on the history that Richard gave us today we see a political landscape with two relatively distinct movements. One's led by parents and the others led by disabled activists, at times, these movements joined together to pursue common causes, 10:17:11 they've many points of Alliance like the fight for accessibility against discrimination for education, employment, accessibility and public transportation, but at times, sharp divisions actually emerge, and the relationship between parent activists and 10:17:27 activists with disabilities can actually become antagonistic. And so we wanted to understand this complicated dynamic. 10:17:36 One of the strategies we use was to look at the political agendas of various groups to look at points of Alliance and division. 10:17:45 So we started by focusing on grassroots organizations run by activist with disabilities. 10:17:53 These include groups like the American Association of People with Disabilities the artistic Self Advocacy Network the National Association of the Deaf, the National Federation of the Blind and self advocates Becoming Empowered just to name a few. 10:18:07 So these groups are diverse, but they share that they are all led by people with disabilities. And they built the stable coalition, on the basis of shared interests, including in social reform to achieve full civil rights, and accessibility for people 10:18:27 with disabilities. 10:18:31 Parents and parent led organizations may or may not embrace the same goals as organizations led by people with disabilities. 10:18:40 I'd like to walk you through three points of agreement and division. 10:18:45 These will include social reform versus medical cure and treatment. 10:18:51 Integration versus specialized or segregated services and empowerment of people with disabilities versus parent authority. 10:18:59 Okay, so the first area that I'd like to talk about is social reform versus medical treatment. 10:19:07 In general, organizations led by people with disabilities, advocate for social reform to provide the rights access and supports necessary for all people to participate in society, their priority is not usually medical research or finding a cure. 10:19:25 This doesn't mean that they're anti cure. Rather, it means that they don't believe the people with disabilities should have to be cured or fixed to participate in society. 10:19:36 Instead, all people across a spectrum of human differences should enjoy civil rights and feel valued. 10:19:43 Like activists with disabilities some parent groups also focus on fighting for social reform and rights. So for example, the National Organization of parents are blind children. 10:19:54 Doesn't dedicate a lot of its resources to medical research or the quest for cure. Rather, its focus is on fighting for equity and access. So a quote from their website says you can live the life you want blindness is not what holds you back. 10:20:12 Every day we raise expectations of blind people because low expectations create obstacles between blind people and our dreams. 10:20:21 In other words, blindness doesn't need to be fixed society and its barriers and low expectations do many other parent lead groups the prioritize biomedical research and cure. 10:20:34 This becomes a problem for disabled back to this especially when it increases stigma. 10:20:40 So here I'm going to use the example of Autism Speaks. It's one of the organization's most likely to use a medical approach. 10:20:48 They often refer to autism using a negative medicalized language like the global autism epidemic. 10:21:02 They've compared to autism to cancer and AIDS calling for its eradication their awareness campaigns, often present autism, as scary as devastating their campaigns often show children alone, isolated unproductive. 10:21:16 It is their primary goal is to raise the funds to cure autism or to minimize the effects of our appearance of autism through treatment, not primarily to demand social reforms, or civil rights for people with autism to leave to live fulfilling lives. 10:21:33 So, activists with autism frequently find little in common with Autism Speaks. They rarely collaborate on legislation. 10:21:45 A second area that I wanted to talk about is integration versus specialized or segregated services. 10:21:54 So, most activists with disabilities fight vehemently to create the infrastructure and rights needed to support people with disabilities living valued lives in the community. 10:22:06 The goal of inclusion means that activists with disabilities also tend to fight against institutionalization, and even against large scale disability-specific service settings. They argue institutions enforce segregation, deny 10:22:32 people with disabilities access to the community, and therefore deny them liberty and choices that other citizens have. 10:22:33 So, again, sometimes we see parents who express support for inclusion. For example The Arc is a parent-lead organization that serves people with intellectual and developmental disabilities, and they have a great position statement on inclusion. 10:22:49 It reads, This is just a very brief part of it, quote, "all people benefit when persons with intellectual and developmental disabilities are included in community life. 10:23:01 People with disabilities should be welcome and included in all aspects of society." 10:23:05 They go on to advocate for inclusion in schools, inclusion and housing embedded in local communities, integrated leisure integrated worship. 10:23:15 On the other hand, parent groups are less likely to fully commit to inclusion, and they're more likely to see a role for institutions and specialized or segregated services. 10:23:27 So VOR is a group of parents who work to keep institutions and large scale state centers for people with intellectual disabilities, open. 10:23:36 Some of these parents place their children in institutions. 10:23:41 Decades ago even possibly when they were recommended. 10:23:46 Others, even today, struggle to find an appropriate placement for their child and they see disability-specific settings as offering a lifeline for services. 10:23:57 However, for activists with disabilities they argue in these segregated places people with disabilities are defined completely by their disabilities, they can't come and go as they please. 10:24:07 They don't have full access to the community. Right, so disabled activists argue, we need more community based services, rather than putting people in disability-specific settings. 10:24:23 We see this dispute among activists with mental disabilities, and parents as well. So parents who have offspring with mental illness have fought against disabled activists to increase access to involuntary hospitalization. 10:24:38 So NAMI, the National Alliance on Mental illness, which is largely parent-run argues quote "states should adopt broader, more flexible standards that would provide for involuntary commitment, or court ordered treatment When an individual due to mental illness is substantially unable to provide for any of his or her basic needs, such as food, clothing, shelter, health or safety." 10:25:06 Their intention is to ensure that people with mental illness receive care, and this is a great intent. 10:25:12 But disabled activists argue. Many people with mental illness are poor, homeless or don't have medical treatment, because our society fails to offer those supports America doesn't have universal health care. Many people with mental illness cannot find jobs that will accommodate them housing is so expensive people end up homeless institutionalization doesn't fix these problems. 10:25:41 Rather, it segregates and institutionalizes people instead of providing the support that they need in the community. 10:25:49 So the third factor that I want to talk about is empowerment. 10:25:53 People with disabilities want to exert control over the policies and services that supposedly serve them. 10:26:01 Some parents support this empowerment and support putting people with disabilities in leadership positions. 10:26:09 Again the national organization of parents of blind children is a good example of this. It's part of the National Federation of the Blind which is led by blind adults, lets blind adults create the activist agenda. 10:26:22 They lead their movements, and parents support it, other parents join and promote self advocacy organizations, they support their loved ones in trying to make decisions that determine their lives. 10:26:37 But parent-lead organizations tend to be that parent-lead. 10:26:42 Some have almost no representation of people with disabilities on their boards. So VOR has a 16 member board. They report no self advocates. Autism Speaks has a 29 person board 29 member board, two self advocates. 10:27:03 The Autism Speaks board is primarily designed to create connections to power and money to media to large donors to medical centers, but they haven't created connections to autistic activists right and so it's not that surprising that these groups don't actually build alliances, often. 10:27:29 So to wrap up my part, parent activism is diverse. 10:27:34 It's been really important for parents to establish themselves as experts in disability and to be recognized as having authority to make choices for their children. 10:27:43 It's super important because we have a long history in which kids with disabilities have been excluded. They have been abused in institutions. They've been left out and parents have had to fight tooth and nail to ensure that their kids have opportunities. 10:27:59 But the same claim to authority can be problematic when parents voices carry more weight than the voices of people with disabilities, parent organizations tend to have larger memberships, more money, better political connections. 10:28:15 So parent authority can actually act to undermine the rights and the voices of people with disabilities. Right, on the one hand we see hands and activists with disabilities as tremendous allies who fought side by side for disability rights. 10:28:31 On the other hand, we see this relationship that's really fraught with tension and is likely to remain so. 10:28:38 So I'd like to turn it over to Pam at this point. [Pam Block] 10:28:43 Hi everyone I first I want to say thank you to Temple University for giving me this opportunity to be reminded how wonderful and brilliant and how much I love my co authors. 10:28:56 And I also want to say I this is a very special presentation for me, given that both my mother and my aunt got degrees in education from temple and my on went on to get a masters degree in special education from temple. 10:29:11 She's in the audience now and it just, just warms my heart. 10:29:16 The wave and she also is a special education teacher and Philadelphia public schools for four decades. 10:29:23 Anyway, so my part of the presentation today I'm going to talk about how the roles that parents have as activists change across their lifespan and their child's lifespan how relationships and life transitions there's like a fluidity where people move 10:29:42 between sort of different roles. And I do want to note that, that, you know, some of this has changed over time so the experiences of my older sister hope who is in her early 50s like her life transitions would be different than then kids that are growing 10:30:00 up now. 10:30:02 But I will say you know there are particular activist roles for and and priorities of parents with newborns right and young children who are, you know, just like sort of understanding coming to understand disability and, And, you know, needing to advocate 10:30:24 for medical support for their kids may be, or interventions rehabilitation or other kinds of interventions right and so their focus is often on, you know, and there and they might have to be at different degrees of acceptance and support you know, the 10:30:41 idea of having an accepting that a member of the family is disabled. So the focus in that realm of our that part of life might be really focused on like biomedical approaches and sort of cure and treatment advocacy, and that's a site where you might often 10:31:01 see parents of very young children clashing with disabled adults over approaches because disabled adults have experienced certain interventions and have very strong opinions about them right and parents are just in this very desperate place where they 10:31:20 want to try everything and they don't know who to believe. And no matter what choices they make and who they choose to believe there's going to be somebody screaming at them that they're doing it wrong, and that they're ruining their child right so it's 10:31:32 a horrible position to be in. It's very different from the experiences of my mother when my sister was was very young. Right. And so the message is that parents are getting is that their failures, no matter what you know no matter what they choose, and 10:31:47 but artistic activists are and other disability activists are trying desperately to say but listen to us we've lived through this we understand, you know what worked for us and what didn't work for us and what was actually harmful. 10:32:01 So, you know, it's a very complex and a time of a very heated, you know moment of of interaction between parent activists and disability activate the activists who are disabled. 10:32:16 Um, so, I want to, then you know when children get a little older, the focus is on education people are entering or the children are entering the school system and the advocacy focus is on making sure that the educational support, are there, and also 10:32:34 maybe things that are still available in the home and because of the law in the United States right the mechanism for getting different kinds of supports changes when you enter school age certain things like early intervention things that can be done 10:32:47 in the home and are are easier to access become sometimes more difficult to access once the children reach school age, and then you have transitions throughout school life and try needing to understand this process of the IEP of preparing students to 10:33:03 transition from primary school to secondary school and then secondary school to beyond. And I'm you know and and the understanding that you know when we're talking about emerging adults that they should really be part of this conversation right and also 10:33:19 should have an ability to understand their diagnosis or whatever reason that they're needing different educational support, and to have sort of pride based understandings rather than just pathology based understandings of which are often when it comes 10:33:36 to the fore when you're, you're negotiating for services in school in order to get the services you have to prove that there is a need for them. And that can be very apologizing right. 10:33:48 And, um, and then as emerging adults that can be a scary time for many reasons for parents when they parent children often want increased autonomy and they're going to get it, they have a right to it right and some parents are not prepared for that. 10:34:04 There's also a cliff of a policy cliff, where lots of supports disappear when children turn 21, and are transitioning post, you know i EP post Ida right, all of those services that are guaranteed legislatively while that the emerging adult is in school 10:34:23 are suddenly not available so kinds of supports that allow people to be disabled teams to be a part of the community or abruptly taken away when they're young adults. 10:34:36 And so people who were, you know, leaving the house every day might be stuck in the house or people who were able to live at home or suddenly no longer able to live at home because it supports that allow them to live at home, have disappeared. 10:34:47 Right. And this can get very conflictual because parents overprotectiveness can sometimes infringe on human rights, right and so there are court cases about this about disabled people with intellectual disabilities wanting to live and work in the community, 10:35:02 and parents, you know mandating that they be in what they consider to be safe spaces in like group homes or other kinds of segregated settings so the justice for Jenny movement is an important example of this. 10:35:17 And another issue that I want to outline is it to emphasize is the importance of communication access that communication access and advocating the parents understanding of how important it is to advocate for communication access is really central to, 10:35:38 to a disabled person's ability to advocate for themselves eventually right because you lack the ability to communicate, how can you advocate effectively for yourself. 10:35:49 And so there are so many barriers to getting the kinds of assessments and supports that are needed, and again this is another place where oftentimes lots of so called experts are screaming about what is right or what is wrong or what is fraudulent or 10:36:05 what is helpful, and it can be very confusing for parents, but the stakes are extremely high right This will determine somebody's life course right their ability to communicate. 10:36:17 And so I just want to emphasize you know the importance of presuming competence and, you know, trying, you know, trying, trying lots of things, even if you know they're there are lots of contradictory information about it but it's super important to and 10:36:34 I know cream is probably going to talk more about this later on. 10:36:39 But, and there are very. 10:36:43 But, and there are very, um, the, the, who has access to support for communication access is also layered by class and race, and where you live, and the type of educate you know the kinds of resources that might be available or not available in your community 10:37:09 based on all based on these factors and this can lead to some tragedies as we seen also in recent court cases. Um, so, and then another sort of hot point for me is sexuality, not just for me but I mean, you know, in terms of like somebody's life course 10:37:18 that sexual rights and access is, you know, something that's always been super important to disabled people there's often been a lack of resources and supports and education as people are emerging into adulthood, and parents can be very supportive, or 10:37:34 the exact opposite of supportive right they can create barriers to to the emergence of disabled emerging adults as sexual beings. Right. And so parents beliefs, structural barriers, either created by the parents or if they're in a living situation where 10:37:53 there, there's a lot of structure and lack of privacy, you know can really determine, somebody's ability to, to be intimate to be, you know, to be romantic even to to establish, you know, connections with other humans and the way that humans are meant 10:38:10 to connect with each other, and. 10:38:14 And then there's of course also lots of societal beliefs about sexuality disabled people being either a sexual or perpetual children, or hyper sexual right and then there's the realities that especially if people have communication barriers, their, their 10:38:32 potential for experiencing sexual violence or other kinds of violence are are very high much higher than in the general population. 10:38:42 And then finally, my last point I want to talk about aging and interdependence between parents and children and the kinds of activism that is necessary as people are, you know, so parents might themselves be becoming disabled, right, and who takes care 10:39:01 of who and what kinds of support, support who are might be shifting at this time, where, you know, the disabled child who was being taken care of might actually have or the supports that they have might, you know, in turn, support, support the parents. 10:39:21 And then, you know, financial realities might change during this time where somebody wants to live as they age. 10:39:31 You know also might change and shift during this time. And then you also have parents who passed away and what this might mean, sometimes dramatic shifts in quality of life for disabled children and so there's actually I think a much greater need for 10:39:50 activism and understanding of this these very complex intersections of disability that emerged, at this stage of life. 10:39:58 And I think that, you know, all of this is put into hyper relief. During the current pandemic right where we're seeing these interactions of of long term care and, and, you know, parents and children in long term care and care settings together and dying 10:40:18 together of hope it was there was a case in Ontario unfortunately So, um, you know I think a lot more attention needs to be taken to this into this area. 10:40:29 So I am going to pass the mic back to one of my co authors to Allison. [Allison Carey 10:40:37 Awesome. So let me do a wrap up, and then we will turn to Q&A and Kate will facilitate that. 10:40:43 But to wrap up. Parents have, and families have real needs that are often overlooked by the service system. 10:40:53 They have to fight, often for even the most basic services to keep their loved ones, safe. 10:41:02 So by pointing out the tensions, our point isn't to criticize parents per se. It's to think about where have alliances been robust and successful in building rights for people with disabilities, and to point out where the divisions are right, and why 10:41:21 those divisions exists right and how we can think through and learn about the different perspectives that are, you know, fundamental to those divisions. 10:41:32 We urge parents to consider, reaching out to disabled activists, right, to building those bridges has often are activists, among other parents right which feed a parent perspective. 10:41:49 But hearing the perspectives of adults with disabilities, their life experiences right can really inform where, how we empower people what the best options are. 10:42:02 And so we encourage parents to build those conversations on the other side we also encourage activists with disabilities to build channels out to parents, especially structural panels. 10:42:14 Right, so I had mentioned the national organization of parents and blind children, right, which is part of an organization led by blind activists right. 10:42:26 The, the activists with disabilities created those channels to bring parents in to help support them to give them mentorship to give them expertise and a support system. 10:42:39 Right. And so there we see these alliances nurtured over time. 10:42:44 Mostly what we hope is to have conversations about how to best meet the needs of people with disabilities and their family members, not one group instead of the other, but in solidarity to meet the range of human needs and ensure that people have access 10:43:01 to what they need to live, meaningful and valued lives on their own terms. 10:43:07 Right, so we are done and we will open it up for Q&A thank you everyone. Panel 1: Questions to the Authors, Allison, Pam, and Richard [Kate Fialkowski] 10:43:18 Hi this is Kate, I just added myself to the spotlight so I could facilitate some of the questions that that we have coming in. Um, so the first question, I saw on the chat board a little while ago and I think that this might go to you, Pam, it was from Noah Brophy. "Once we get access, how do we get society to learn how to communicate with us?" [Pam Block] 10:43:45 That's such a great question. 10:43:47 And I think that the next panel will also have more to say about that. Um, I really do. I'm a cultural anthropologist and I do think it's a process of of change and we have such a long way to go, don't we, but I think that actually one of the things that I think is really interesting about the pandemic is that it has created opportunities for interaction because presentations like this are accessible to people who might not have had access to it before the pandemic so it's created opportunities 10:44:22 for people to connect together from all over the world. Right. And, um, you know, and yet not leave their house. So, you know, and when you think of all the barriers that exist for connection like even beyond the, the issue of one individual's 10:44:39 ability to communicate, there is like the, the ability of all of us to connect in ways that are accessible. And I feel like, you know, disabled people have been the experts in this transition to online interaction that you know they've really, they're the 10:44:59 experts, and they've led the way. And I think that's pretty much what I guess that's my quick answer is. You know, listen to what disabled people say about these things. If people would just listen, you know, then, then things would be so much, you 10:45:14 know would work so much better. [Richard Scotch] 10:45:17 Well, I can just add quickly, I think. I agree with everything that Pam said but sometimes you gotta do things to get people's attention. 10:45:26 And so the the activities of protests, or political organizing often facilitate those kinds of dialogues they're not an alternative to them. They actually complement them. 10:45:42 And to some extent the protection of laws like the Americans with Disability Act, or IDEA, the Individuals with Disabilities Education Act, help to facilitate or even force conversations between people in positions of power, people in institutions who 10:46:00 control resources and and the people they're supposed to be serving. 10:46:05 So we want to communicate. 10:46:09 But we also sometimes need to get people's attention. [Kate Fialkowski] 10:46:17 Thank you so much for your answers. 10:46:21 And I just want to mention that the Q&A board is open. Thank you for the people who are putting questions in the Q&A board. I've also captured some questions from the chat. 10:46:31 So I'm going to be navigating back and forth whatever way works best for you please submit your questions. 10:46:38 Richard, I wanted to ask you a question here from the history. Oh by the way, I should just promote so everybody knows the cover of the book when you see it.[holds up book] 10:46:50 This question is from me. So, in reading this book um, and in what you said early today you mentioned the civil rights movement. Could you talk, maybe just give us a little more information, any linkages between the civil rights movement and 10:46:56 the parents movement in history? [Richard Scotch] 10:47:10 Well, I think early on, they worked in parallel. 10:47:14 But they weren't exactly connected. 10:47:17 So since the late 1960s, there have been a number of connections made and particularly on into the 1970s, to some extent there was some tension early on because of concerns that somehow disabled activists my takeaway needed attention, or, or dilute support 10:47:44 for other civil rights movements. But I think everyone learned that it was much more positive sum gain that a zero sum gain that things that advanced rights for some people actually advanced rights for everybody. 10:48:01 One example I give is Brown versus Board of Education. 10:48:05 The law that struck down the segregation in public schools, was used by parent advocates to challenge the segregation of education of children with disabilities in public schools. 10:48:25 But, at the national level and in many local communities as well, there are partnerships across the various civil rights groups, particularly in the legal and political rounds to challenge laws to promote policies that are more inclusive. And and so I think 10:48:46 there's a, there are some very good partnerships going on right now. [Kate Fialkowski] 10:48:53 Thank you Richard. I think this question might be for Allison, but you can correct me if I'm wrong. 10:49:01 This is a question in our Q&A that has come in from Jackie Spaid. Hi Jackie. 10:49:07 It says, "How would you approach folks within a field that adult activists have said is damaging? Folks within the field have a vested interest in maintaining it maintaining that field, their employment, or even their identity. 10:49:24 So how can we open a dialogue to make practices less harmful and more helpful?" [Allison Carey] 10:49:32 That is a great question, and it often takes a lot of time to help people redefine their relationship to people with disabilities to what their goals are, right. 10:49:49 So, when we think about something like special education, which there are separate schools and their separate programs, right, and so special educators often have been trained in that model. 10:50:05 They understand that model and they have a belief in what they're doing. Right. And they also see many programs, about inclusion that aren't actually what they promised to be that aren't very successful. 10:50:19 But those teachers need training and background and they need support from the school district that teach them how to better include children, they need access to the research that shows that including kids, even with significant disabilities that those 10:50:39 kids game, academic skills again social skills right so 10:50:46 professionals need to gain exposure, and they need to have the support to do that the training and the support and the administrative supports to be retrained and to rethink their relationship to people with disabilities and it does sometimes really threaten 10:51:03 their expertise. It threatens the basis of of their professional identity to swap out right instead of I'm the expert, now I'm a support system right now the person with the disability is the expert. 10:51:20 That is really threatening. 10:51:22 But I think we've seen professional starting to make that shift. 10:51:29 And so I think we can keep building on on that. [Kate Fialkowski 10:51:35 Thanks Allison. 10:51:38 Pam I think that this question might be for you. And this is coming through self advocates united as one so I want to give a shout out to self advocates united as one. 10:51:50 "Can you discuss how social media platforms are either bringing the two groups together, or creating further division and conflict between activists and parents, families?" [Pam Block] 10:52:06 Um, I would say, it's, it's, I don't know whether I would say it's in itself a mechanism for either bringing people together or separating them, but what it's doing is making the divisions and differences and also the commonalities and the alliances,very visible. 10:52:25 Right, so, um, you know parent blogs, which is something that one of our audience members of a colleague of mine from Stony Brook University Sharon cuff writes about this, these blogs of parents, the visibility of those blogs has allowed autistic activists 10:52:43 to really understand and problem of monetizing when necessary, interactions and approaches that parents have they might not have had that ability to do that or you know in earlier generations before this technology was available, but also, I've seen parents 10:53:01 who have come out as as major allies or, or, you know, collaborators, or you know people who are sort of partners in partners in activism with with disabled people like parents who are really articulating a pathway for parents who want to be that support 10:53:23 system for, you know, not again not the experts, but the support system. And so it has, you know it's created places where people can connect with those who have similar points of view, it can mean that you're you, there's always a social media echo chambers, 10:53:43 but we can also look and see the different approaches and you know at least try to address the divide or at least to call out things that that you know we we strongly disagree with. [Kate Fialkowski] 10:53:59 Thanks Pam. 10:54:02 I see a question that kind of relates to this, and I'm not sure who it should go to. 10:54:08 This is from Darren ---- and Darren says "thank you for this exciting book and highlighting these tensions. My question is whether you saw ports and the legal system, leaning more towards one group, parents, versus self advocates in their decision 10:54:27 or creation of policy." 10:54:30 So has it been the same or is it changing? So, which way do the court lean?" [Richard Scotch] 10:54:36 Well, I think the courts have gone in all different directions so it's hard to make a generalization about all of the courts. 10:54:44 I would say that one of the things we've learned as as legal rulings have come out over the decades, is that the courts, share all the prejudices that the general population has. 10:54:57 And so all of the kind of stigmatized conceptions of what disability is and what people with disabilities can or can't do have been shared by judges and have been shared by court rulings. 10:55:13 And so, again, it requires a kind of very proactive advocacy in the legal realm, to make sure that those aren't corrected. So I do think there has been learning, over the years, by the courts, but in some cases. 10:55:31 They've needed to be educated or corrected. So in the Bay Area. 10:55:39 Congress had to pass a law in 2008 to basically get the attention of the justice system, about what Congress had actually intended. When they passed the law in 1990. 10:55:53 So I can't speak to specific rulings. 10:55:57 But I do think the courts have been judges have been learning more, but I'm not sure that going back to the original question about where they stand visa v parents or visa v people with disabilities. 10:56:14 I think there is a prejudice within society that people with disabilities can't really speak legitimately on their own behalf, and that their parents have to be accepted. 10:56:27 And so I do think there is a bias in many situations, including courts, including legal conflict toward parents and we're seeing that in the mental health area, where a number of courts have tried to make it easier for parents to forcibly institutionalize 10:56:50 their adult children in the in the in the cause of their safety and safety is important, but autonomy is important too. 10:57:01 So some courts have been more deferential to parents and others. [Kate Fialkowski] 10:57:06 Thanks, Richard. I think we have just one more question that we can fit into the time and Allison I think this question is for you it's from Emily Frank, and based on what you had talked about about the division between sort of the social and the medical. 10:57:26 So here's the question, um "Parents of young children are sometimes in the position of having to make major decisions that will have lifelong impact for the children about surgeries ABA treatment, whether or not they should have cochlear implants, etc. 10:57:47 Do you have any guidance for parents who are making these types of decisions for young children, given the children might not be in the position to express their opinion or understand the implications?" [Allison Carey] 10:58:02 So, what I would be so bold as to suggest often parents are only hearing from medical professionals or non disabled professionals about the best course of action. 10:58:23 I would suggest the parents, open up the purview of information and look for adults with those disabilities to learn about their experiences to learn about what worked for them, how they have lived meaningful lives. 10:58:51 And, but and then take all that information and make those decisions, right so Pam mentioned ABA. 10:58:52 There are folks who feel strongly that applied behavioral analysis is a positive thing folks who have been harmed through applied behavioral analysis. 10:59:03 It's incredibly hard for parents right but they need to know what ABA is and how it how it varies, and when it should be using when it should not be used. 10:59:15 And, and listening to people with disabilities as part of that. 10:59:20 I would just mentioned specifically on cochlear implants that people interested in this issue might want to check out the work of our colleague Laura Malden, who's written a very interesting book on families and their struggles over trying to make decisions 10:59:41 about cochlear implants for their young children. So that's ma ULDIN, Laura. 10:59:48 Thank you very much. [Kate Fialkowski] 10:59:51 Um, so, first I want to say a big big big thank you to the first panelists. Yay. Thank you so much, really appreciate you, boy, we tried to pack a whole lot into this hour. 11:00:06 And so I'm just going to hold up the book again, because I have nothing to do with this book so it's not like I am self promoting but I'm so excited to have a copy of it. 11:00:16 I have been really excited to read it, and how lucky we are to have the actual authors talk to us about the book to the people who wrote questions I'm so sorry that we didn't get a chance to get to all of the questions 11:00:31 I want to say that we will have another, yay. So I want to say that we're going to have another panel come up, but I'm going to put us on pause and we will take. 11:00:43 I don't know a couple of minutes to let people who need to flow off slow off, anybody who needs to make a quick rest stop, you can make a quick, quick rest stop, and then we will be starting again in approximately five minutes for our second panel, which 11:00:59 includes activists themselves. Panel 2: Activists Speakers [Kate]Kate Fialkowski, Institute on Disabilities [Allison]Allison Carey, professor in the Department of Sociology at Shippensburg University [Debbie RObinson] Ms. Deborah Robinson, administrator of Speaking for Ourselves here in Pennsylvania [Kerima Cevik] Ms. Kerima Cevik, parent activist blogger on the AutismWars.blogspot [**note on timestamps, from this point forward the timestamps differ from the video by ~5 minutes] [Kate Fialkowski] 11:06:36 Okay Hello everyone. 11:06:41 Welcome again to this morning's mini series, which is really a book talk on Allies and Obstacles Disability Activism and Parents of Children with Disabilities. 11:06:55 Thanks to everyone who has remained on the line, and thanks to those who have just joined us. My name is Kate Fialkowski I'm the Associate Director of academic programs at the Institute on Disabilities. 11:07:10 And I am going to -- just bear with me -- so I'm going to treat this like it's a brand new session and just repeat a few things for everyone who may have come in and joined us new. 11:07:27 This webinar has live transcription so if you want to view the transcriptions, you can click on the little CC on the bottom of your screen and you should be able to turn on or show your subtitles. 11:07:37 This webinar is being recorded and transcript ID, and we will be making it publicly available so everyone who has joined this event will get a link to it afterwards. 11:07:50 All attendees of the book talk receive a discount code for 30% off the book. And when I stopped talking I will actually place it in the chat so that everybody has it 11:08:02 about the format of this event will have a panel of speakers, and we'll collect questions through the q amp a feature of the webinar. So please feel free to use that feature with throughout, but we'll be holding questions until the end, and we'll leave 11:08:18 time to be able to talk to the panelists. 11:08:22 Okay, so our second panel will start and go till noon, and we have two panelists and moderator. So I'm pleased to introduce and give a very warm welcome to Allison Carey professor in the Department of Sociology at Shippensburg so Allison will be acting 11:08:42 as the moderator. 11:08:45 And I'd also like to introduce Miss Deborah Robinson, who is the administrator of Speaking for Ourselves here in Pennsylvania,[Debbie holding up book] and that's great. 11:08:58 And I just want to say I've known Debbie for so long, and Debbie is one of the pioneers of the self advocacy movement in the country and especially in Pennsylvania. 11:09:12 And I also want to introduce Mrs Kerima Cevik parent activist blogger on the Autism wars.blogspot.com Here we have put that in the 11:09:28 But that in the chat for everybody. 11:09:32 Well that didn't work, missed a letter Hold on, 11:09:39 try that again. 11:09:41 So I'm going to just take a second and switch my video off and turn on Allison Kerima and Debbie. 11:09:49 We welcome you to this second hour of this book talk. Thank you so much. 11:10:08 And there we go, Allison I'm turning it over to you. [Allison Carey] Right. Great, thank you again Kate Thank you everybody who came to the first panel thank you for those who are here at the second panel, and especially to those of you who have been with us all morning. 11:10:24 I'd like to start by. 11:10:27 We're going to have Debbie Robinson, talk about her experience and I'm going to facilitate that a little bit by asking Debbie questions and she's going to respond. 11:10:37 So, Deb, can you tell us a little bit about how you became a self advocate? [Debbie Robinson] 11:10:44 Well I became advocate. I guess I was a self advocate all the time. Really started when I came out here in the early in the late 80s --and I think it was 88 -- come out here to visit my mom. 11:10:59 That was going thru some type some surgery. 11:11:09 I came out that -- I think it was between 87-88 I believe. [Allison Carey] 11:11:10 And not all people become self advocates so what was it about coming here or what was going on? What lead you to become who you are? [Debbie Robinson] Well, it came from... when I got a chance to meet... 11:11:25 I was in a workshop. 11:11:28 Sheltered workshop. 11:11:30 At the time. And I got to meet some folks. 11:11:34 Some members of Speaking for Ourselves. 11:11:37 I, and then, um, you know, I noticed some meeting. Speaking for Ourself, had a real job of conference in Philadelphia on City Line Avenue 11:11:55 at the time. And somebody, our workshop teacher told us about it, about a conference to Speaking for Ourself was went on at a hotel at a time. So I went to a Speaking for Ourself conference. 11:12:12 And I ended up in a workshop for real jobs. 11:12:16 And -- I forgot the gentleman I met -- and I was really taken by it. 11:12:25 And, you know, and that's where started. That's where I met 11:12:35 Nancy Nowell, who knows to me and her husband was advisors of speaking for ourself. She was advisor for the Philadelphia chapter. 11:12:45 And she was telling me a little bit about it, and her husband was also advisor of speaking for ourself. But he was advisor of Bucks County. 11:12:57 So, after that, I got to know. Nancy a little bit. 11:13:02 And she was telling me about it. So then the next day I met a gentleman called Richard Young, he's in a wheelchair. 11:13:12 I know he was a member of Speaking for Ourself, so he invited me to Speaking for Ourself 11:13:18 Chapter meeting. And that's where I met Roland. Johnson. Who was my mentor 11:13:26 at the time. I had no idea. 11:13:28 I was taken by him. 11:13:32 We got along really well. He loved my questions. 11:13:37 He's the one that was my teacher mentor and draw it out. He knew right then, with the questions and things I asked and things. He was really fascinated with my with me so he ended up talking to me about Speaking for Ourself and joining and be part of it. So 11:13:59 Roland was that, that first mentor. [Allison Carey] 11:14:06 Yeah, so you were mentored by Roland Johnson who had lived in Pennhurst who was himself self advocate as well as by professionals. I always do a shout out to Roland Johnson's book Lost in a Desert World which is available on just through the internet 11:14:24 at the Disability History Museum. 11:14:45 Deb, can you tell us a little bit about what kinds of issues are important to you, as a self advocate? [Debbie Robinson] 11:14:37 Well, important to me is important to everybody. We all wants to save things we all need help and support and we're not perfect, this is not... Everybody needs some kind of support help. 11:14:53 It's in our, it's in our nature, I think we're just like anybody else. 11:14:58 But we just have different needs and disability unfortunately. Like I have a niece in New York, that has Down syndrome. So my nephew, and he has two, I hate to use this word normal normal kids, but Grace is the oldest and the first born that has Down syndrome. 11:15:20 So, you know, and now he's a young parent and his wife is an advocate for their daughter and and Down syndrome and learning about disabilities and, you know, and through Grace, they learned a lot as young parents. [Allison Carey] 11:15:44 Can you in your process of becoming a self advocate and as a self advocate now. Can you talk a little bit about how your family provided support, or didn't provide supports? [Debbie Robinson] Well they said they didn't. 11:16:05 My mother was a very. My parents were very supportive and I have brothers and sisters, brothers, at the time, as you know. And the first panel, years ago, parents was told by doctors and an education on, and I'm that I'm just turned 60 so in the 60s and 11:16:26 the 70s. They didn't have a, you know, people with disabilities. People were afraid of us. 11:16:36 When I was growing up, 11:16:38 if somebody touched me or hold my hand, they thought they would get the disease. 11:16:44 That's how parents at that time. 11:16:47 So, you know, they kept them away because they didn't have the education they didn't know they didn't that, you know. My parents decided not to put me in institutions. 11:17:02 So, when school started -- before school started I learned from home in New York. So, originally from, you know, New York before I came into live out in the 80s. [Allison Carey] 11:17:20 And then, self advocacy groups, often work with parent-lead groups like The Arc or UCP. Can you talk about how speaking for ourselves has worked with other groups how what support you've gotten? [Debbie Robinson] 11:17:43 Well, what I learned from the two mentors were Roland as you know and Mark Friedman. when I get on the board of directors because I was the first woman president of our chapter. African American woman. 11:18:03 The Philadelphia chapter and also the first board. 11:18:05 woman, African American, on the board of Speaking for Ourself at the time. 11:18:11 They were all, you know, mostly. No, no offense, white, and I just, I just wanted you know just share that part of the history. 11:18:39 Being the first. This is about breaking the mold on and also about also about me. 11:18:31 When I also broke that people don't know about me. When I first came out here. Um, I didn't know, I didn't know anybody I didn't know nobody. My mom didn't know anybody. 11:18:42 So when I met with everybody in Philadelphia they was telling me all about people in slots, and they pick a slot. And I said well what's the slot. I'm not a slot I'm a person. 11:18:55 So, I, I changed the thinking because I was the first ever in Philadelphia to pick and choose my own agency. And challenge to know how to, how to do that, because 11:19:11 nobody but... 11:19:12 You know I don't know anybody but why can't I interview people? Why can't I choose my own? And I challenge, I was the first ever before self determination before all this other stuff. 11:19:24 I was the first ever in Philadelphia to challenge my own county and choose and pick and interviewed 11:19:34 my own agency when I came out here. [Allison Carey] 11:19:37 Because prior to that, it would have been chosen for you by the bureaucracy [Debbie Robinson] because they would appear normal now is, is slots, people at that time was in slots now. 11:19:48 I don't know what slots mean, I didn't, I didn't know anybody when I came out here. 11:19:54 And why was it? And they had this big book of regulations, and I told him, put, show me in regulations, with what is a slot. Why do we have to have people choose slots? We want to live. 11:20:07 They couldn't show it to me, and, and, and the regs because it wasn't there. 11:20:12 So, Philadelphia allowed me to interview, three agencies. 11:20:19 Of top agency directors, so it was interesting. And my mother was with me. That they had to sit there with me, and looking at me as a person with a disability because this has never been done in history. 11:20:45 This was the way before self determination. 11:20:37 So it was interesting. Yeah. Wanted to show you that part. 11:20:44 You know the challenge. The challenge challenge a whole county of people, and this is the first time I've been... I didn't know anything. I didn't know the rules and regulations of Philadelphia. 11:20:55 Until, you know, I challenged that. 11:20:59 Yeah, I was the first one I ever did that. [Allison Carey] 11:21:03 Absolutely. You have totally, you know, you and speaking for ourselves have changed the way disability services are provided in Philadelphia. Though your career. 11:21:20 So I have two more questions for you through your career as a self advocate. Can you talk about how you've worked alongside parents, or how parents may oppose what you're doing?. [Debbie Robinson 11:21:29 Well, they did both Vision for Equality actually came to to speaking for ourself. 11:21:37 Actually, which was done Dee Coccia. 11:21:42 And they approached us on close -- talking about closing down institution so it was about Woodhaven at the time. 11:21:52 It was interesting because we had, when I was president, all our members were from different institutions and Philadelphia Pine Hill, Woodhaven, I mean we had mostly the members. 11:22:09 And in our organization when I was president was coming from the institutions in Philadelphia, and that's a, you know, and I've never been in an institution so it was very interesting. 11:22:26 Uh, you know, so they came and talk to us and they knew Roland, I was doing the Roland's teaching. 11:22:35 At the time, I am, And they wanted to our help. 11:22:39 So they. I, you know, with Visions, they, they helped with that, with the parents as well because their parents organization to work together and and to fight with... To close down the institutions, or visit institutions and our members are from institutions. 11:23:02 So that was that that broke the mold between us and, and the parents. 11:23:12 I did work with parents, we to get people out of Woodhaven I ended up getting seven people out of Woodhaven. 11:23:20 And we work with parents, we listened to what they had to say we address the issues before they can get out. What type of support they need, what type of help they need. One of the parents said this is the first time anybody has ever sat down and listened to us. 11:23:38 And what we did is took all the parents concerns and work through them and addressed every single one of them. 11:23:48 I challenged the team, ourselves, our advocacy, so they can feel comfortable. We work together. We addressed all the issues because we listen to each other. As you heard from the first panel, which is so true. 11:24:02 If we listen to each other. I know what's out there. And hear everybody's. 11:24:09 If we can come to the table and work together. that's where it really starts. 11:24:14 And that's what we did. [Allison Carey] 11:24:16 Yeah. So my final question. What do you wish parents or people more generally, knew about self advocacy? [Debbie Robinson] 11:24:24 Well, I we're no different than than the parents because we care about their loved ones also. Not one shoe fits everybody. I think there's a myth out there and I don't know who's giving it out-- to the, to the young parents, the institution parents, 11:24:45 and I wish, and I haven't met them yet. We can come together, and what, and I still today don't know why they still believe that their loved ones are better off in institutions. 11:25:02 We faced off with Voice of the Retarded with Polly Speare and we went to what we went to Woodhaven. We battled with parents, and we advocated. We did that in Harrisburg. But we wanted to make sure that people had their voices, people that lived in institutions that wanted to speak that wanted to say something 11:25:31 in some kind of way. We wanted to make sure that their voices were heard to the legislators. It's not my story is their story. We did a. We did a 30 page book on their story and we did. At DD Council, we did a years ago a book. 11:25:44 30 pages. And all the stories we did was institution stories is that Debbie story is not yet was their story because they're the ones that live in these places, I never lived in these places. 11:26:04 And but they, they're the ones that know what it's like they're the ones that did it, they the ones that went to share. We just needed to protect them. 11:26:09 Make sure they were safe, and no harm came to them. 11:26:14 Right. And, and had a place where their voices can be heard. [Allison Carey] 11:26:20 Thank you so much, Debbie I want to turn it over to Kerima. And, you know, feel free to have a few extra minutes if you want since we only have two panelists. [Kerima Cevik] 11:26:35 Hi. 11:26:37 That was an honor to listen to. I just, I want to thank Debbie. I'm a big fan. 11:26:44 And it's great to be on a panel with her. 11:26:49 Um, so there's a lot here that I can't pack into this time, even, but to be African American means that you understand Eugenics. You understand forced sterilization you understand the presumption of incompetence, from the beginning. 11:27:18 This is before you add disability to the mix. You understand what it means to be marginalized. So when you become a parent, and I'm only speaking for myself right now. 11:27:32 When my son was diagnosed with a non speaking, autism and multiple developmental disabilities. And when we were told. 11:27:51 Okay, we were like, "Fine, he has disabilities. 11:27:58 So, how do we support him?" 11:28:01 The answer was, "you're going to end up institutionalizing him." 11:28:06 Okay. And my response to that was "no that's not happening." 11:28:13 Once you make that decision that what is being said to you is not acceptable, that your son has civil rights. Your son has the right to live in your community. You start looking for someone to prove your hypothesis. 11:28:40 So I started looking for someone who was like my son, who was not institutionalized. 11:28:49 And that's how I found autistic activists. I looked for someone like my son, who was an adult, who could help me support my son. 11:29:05 Because something didn't hit me as correct. With this catastrophic diagnosis I was given about my son. 11:29:16 I had enough of a background in psychology to understand the roots of ABA. 11:29:27 And the fact that in the state of Maryland, this is pretty much like in many states 11:29:37 ABA is mandated as your first treatment for autism. Parents believe that this is some kind of treatment that kind of fixes, their kid, and it doesn't, it suppresses. 11:29:59 A lot of things that cause other problems later mental health-wise because what happens if it's not done correctly. And even if it's done correctly is it's very traumatizing. 11:30:13 Um, I needed to find someone like my son and I did, I found a... 11:30:23 I guess what you would call a, the last black unicorn. 11:30:27 I found a woman, who was not institutionalized, who was African American, and therefore understood what it meant to be marginalized. She was a non speaker. 11:30:44 She used AAC to communicate with. She was legally blind. She was deaf. 11:30:53 And she was living her life. Was the mother of a daughter who was later diagnosed with autism, as well. 11:31:06 And she was amazing. 11:31:10 And I got more help from the mentoring 11:31:16 of people who had been institutionalized, and they told us very early on. 11:31:24 Don't institutionalized your son. 11:31:28 They had experienced so much that I was able to circumvent so much harm 11:31:37 that was going to come my son's way. 11:31:42 Um, and so I began using my parental privilege to collaborate with autistic activists, because the most important thing that I can do for my son, for the rest of his life, is make his life, 11:32:07 his humanity, 11:32:10 Better. 11:32:10 He has to have the same rights that I am fighting for for myself as an African American in this country. And he doesn't have that. 11:32:21 I am marginalized. He is much more marginalized, he. 11:32:28 Here's an example. 11:32:32 They were not able to get some kind of baseline. 11:32:36 And I'm putting this in quotes "intelligence" on my son. 11:32:42 And there's a woman with 11 different degrees. 11:32:47 And that doctor said, I am going to get a baseline on your son, we're going to find out. There's no such thing as non-intelligence like your son has to be intelligent, and I was like da 11:33:01 She worked with him for three hours, and he was getting kind of tired of it. 11:33:08 Really he was tired from, he, he does not like being tested. So, what, what, what do you do when you don't want someone harassing you, he just shut down. 11:33:19 Well, 11:33:24 my husband was waiting outside and he was rather tired of this long, arduous process of are trying to test him. 11:33:32 And it didn't matter what we did. He had a learning program, I showed her that he was proficient at that time he was very young, he was, he knew all these words he knew how to put sentences together. 11:33:46 She didn't care. That wasn't, in her skillset, sufficient to prove his competence. So my husband knocked on the door, walked in, because he heard his son was about to lose it in three hours. 11:34:04 And he said, My son is not going to do anything that doesn't make any sense to him. 11:34:09 You're asking him to take some lid and put it on some jar and he knows how to do that. 11:34:16 But he's not going to do it for you. 11:34:19 Why should he do it. There's no sense in it. 11:34:23 And she looked at my husband and said, well, what's your suggestion. 11:34:30 Do something that makes sense to ask him, and maybe he'll cooperate but if you're not asking him you're ordering him he's not going to do it. 11:34:40 So 11:34:44 she looked at him and .. and then he just got exasperated. I said My son is hungry. 11:34:51 You know, just asked him to do something so he can have lunch. 11:34:55 And so she just looked at him said Are you hungry? 11:35:03 And 11:35:02 my son, just looked at her and said [nodded], and she said here, here's an oatmeal cookie and would you like to have the cookie now would you like to take a break? and he was like yes, he ate the cookie took everything on her table and went -bababababa. 11:35:22 And then just looked at her like this: 11:35:25 "Well, am I intelligent now?" 11:35:28 It's 11:35:31 non speaking, autism. 11:35:35 In particular, this is the reason why my blog is called the autismwarrior. 11:35:41 If you're a parent. 11:35:44 From the day. 11:35:47 Your child is diagnosed. 11:35:49 Your, your they, there's an equivalency that's a false one, and that is non speaking means non thinking you're immediately you can see that before the before the diagnosis and after the diagnosis for the diagnosis, you take the kid to a pediatrician He's 11:36:08 fine, perfectly healthy kid. Yeah, he doesn't speak he'll, it'll you know some people speak late. 11:36:15 Don't worry about. 11:36:17 But that day that diagnosis happens. 11:36:22 And if you're constantly coming at these parents with fear. 11:36:38 Your, your kid is going to have a horrible life you're going to have to institutionalize him for his own safety. You can't parent him You can't teach them you can of course they're going to make these really bad decisions. 11:36:45 Of course they're going to make these really bad decisions. And you know, emotionally as a parent, there are some things that I just won't do. 11:36:53 I don't have dozens of locks on my door. 11:37:00 He has his own room he can come and go when he wants to he doesn't have a schedule. 11:37:07 I home parent him because he was abused at school. 11:37:11 And they lost too many nearly died. 11:37:15 But outside of school hours and we share an office. 11:37:22 He does what he wants. 11:37:25 He has his own refrigerator. He goes there when he wants something to eat and eat. 11:37:31 I don't say is that on your schedule. I don't do that. That. 11:37:39 How does he learn any kind of autonomy, if I don't allow him to learn it. 11:37:47 Do you see what I mean. 11:37:49 I mean, there has to be. 11:37:51 And we are as, as parents aren't taught that about artistic children at all. 11:37:57 We're taught that we have to watch them all the time that it's not safe. They don't speak. What if they get lost. 11:38:08 My husband's attitude about our son is that when he has the challenge our son's life is a series of engineering problems. 11:38:19 The problem is not within him. 11:38:22 The problem is that the world is not structured to support him. 11:38:29 And when my husband said that something just clicked with me, and everything I've done since, has been to approach what ever challenged by son is having as an engineering problem. 11:38:44 How would I solve this. 11:38:47 He wandered one day, and his dad said, Let him go. I'm going to follow up. 11:38:54 I want to know where he's going. 11:38:57 And we figured it out. We figured out why he was walking out where he was going and what he needed, and we increased the amount of time, he got to go. 11:39:09 We just figured out where he wanted to go because his dad didn't go, oh my God he's breaking out of 11:39:19 the pedal lock him up. 11:39:21 We kind of put something on him. 11:39:24 He didn't do that what he did is he said, Okay, this kid wants to go somewhere where does he want to be. Why is he going there. And so he followed him and following him we found out our son has a much better sense of direct I have terrible sense of direction. 11:39:39 He knew where he wanted to go. You want to go to the mall. 11:39:44 He wanted to go to the mall and once we figured that out it's okay let's make sure he goes to the mall more, not less. 11:39:53 More. 11:39:56 And this was all because I met this incredible artistic woman. 11:40:06 And 11:40:09 I'm going to give her a shout out even though it's painful because she passed away. 11:40:16 name was Lavonia Gardner. 11:40:19 And she was an amazing person she was incredibly patient with parents, she reached out to parents, people don't think about disability. 11:40:32 Pamela was talking about disability and sexuality. 11:40:38 She was a grown woman who had a married life. She was a parent -- autistic people are parents too-- they're just disabled parents, but their parents. 11:40:52 And so, if you have a parenting problem you can actually ask autistic people they actually know about parenting, all the challenges and everything else. 11:41:05 Yeah. 11:41:09 I'm going way over my time. 11:41:09 Sorry, I get tied up emotional when it comes to how I arrived at this moment my son is 18 now. 11:41:19 And you have to also understand that we 11:41:27 Catastrophic encounters with law enforcement is a thing. 11:41:31 So the fact that my son is 18. 11:41:36 And we've only had such encounters, where we -- because you're going to have them if you're disabled -- with police men. We've only had two. 11:41:48 And he's alive. That's a big deal. 11:41:52 So I need to put that out there too. 11:41:56 And now, Sorry. [Debbie Robinson] 11:42:04 I just wanted to add something and you just reminded me about autism. I dated for a while. 11:42:10 Me and Frank were very close. 11:42:14 And we will gonna get married. 11:42:17 He passed away. 11:42:18 He was autistic. I had no idea what artistic was. He, he spoke in a real job, you would never know that he was autistic. And smart as a whip. 11:42:32 I also had him tested. 11:42:35 So that just brought me back to that. And I dated him for a while and he was the president of our chapter, Philadelphia and also our board of directors. 11:42:46 And I got him in to be tested, and he said he was fully autistic, hundred percent. 11:42:56 Everything any skill like no other. 11:43:01 And they're very intelligent and smart as a whip. 11:43:07 I'm letting you know that. Dating somebody that has autistic and didn't know anything about it until we went on presentations and learned about it from other people that have autism that he was autistic. I wanted to throw that out. 11:43:25 And I had a really close relationship. 11:43:29 For many, many, many years. 11:43:33 And I, He passed away, of a heart attack. 11:43:37 [Kemira] I'm sorry. 11:43:39 [Debbie]Thank you [Kemira] There's such marginalization it's just, um, 11:43:47 It's, it's hard, but especially the autism community you were talking about this divide between this inability to work together with parents, and that and there's a, there's also a class divide. 11:44:08 You see, because a lot of the parents with the connections and the power also extremely wealthy people. 11:44:15 So, if you are a parent, but you're in a marginalized group, you have less of a voice. And if you are an activist an autistic activists. A lot of times that power imbalance is part of the, one of the barriers to people coming together and working together. [Allison Carey] 11:44:39 Thank you all so, so much, your stories are amazing and the way you talk about them doing a quick look at comments and, you know, people just really talking about how they appreciate you sharing your stories. 11:44:55 I am going to turn it over to Kate, to feed you all some of the questions, if that's okay. [Kate Fialkowski] 11:45:08 Just want to say thank you so much for sharing your stories, also. And if you have a chance to look at the chat you'll see how much those stories also meant to people who were listening today. 11:45:24 So thank you so very much. 11:45:28 I have a couple of questions and I received them during the last panel and I think that they apply here. 11:45:38 So, someone, Kerima, this relates to what you were just talking about, um, "how much does race and socio economic status, really shaped the conversation about advocacy and what happens in advocacy?" [Kerima Cevik] 11:46:01 Um, well, 11:46:04 Lydia Brown, who is an Asian American artistic activists talks about racialized autism exclusively. 11:46:19 I met them when they were a student in Georgetown. 11:46:27 And 11:46:28 the first time they encountered 11:46:33 this huge challenge with in the artistic community. 11:46:42 I kind of knew what it was. 11:46:45 It's very hard to talk about something like racism because it's systemic. 11:46:52 It is endemic it permeates everything. Right now I am in Maryland, and the African American citizens of Maryland are being kind of our access to vaccination for Kobe. 11:47:17 Apparently, the way that the vaccine was distributed was more to a community step that are majority white. So if you're asking about how this fits into the conversation. 11:47:36 It said to it almost completely. 11:47:42 My son was not given access to a huge amount in his IP, when he was in public school that. 11:47:56 Just very briefly, my husband and I were waiting for an IP meeting, and we were sitting in front of a classroom that wasn't my son's classroom. 11:48:05 And we saw that in that classroom. 11:48:08 There were white boards. That was incredible amount of equipment. 11:48:13 Huge staff. 11:48:17 And for students in the classroom. 11:48:20 And in our sons classroom. That was when we realized. 11:48:25 No one in our sons classrooms white. 11:48:29 They didn't have equipment. 11:48:33 And when we went to go to our son's classroom. 11:48:39 We saw that they weren't getting the speech support that they needed, what they were doing was watching Barney. 11:48:47 So, if you want to know Yeah, oh yeah, I wrote the state. 11:48:53 There's a. [ringing] 11:48:56 I don't know what that is. 11:48:57 Sorry about that. Okay. 11:49:00 Um, there's. 11:49:05 I wrote, I made, a hashtag one year during autism month. 11:49:09 Because what the conversation about autism 11:49:14 that was being had had nothing to do with us. 11:49:20 It didn't have anything to do with my son occasionally has to use a wheelchair. I was willing him in and out of the store. 11:49:31 And they stopped us, and checked. 11:49:36 Made me lift my son checked under his wheelchair to see if I had stolen something and put it in his wheelchair. So when we are talking about does this race bars, access to services, race, because the autism conversation is dominated by affluent white 11:50:02 parents who are do not understand. 11:50:06 They have access to attorneys that can sue a school when they see something like my husband and I saw that day. 11:50:19 We reached a point where my son was so abused and so beaten on that, I, I am a strong advocate for public schools. I pulled my son out of school and started homeschooling him. 11:50:32 He's been homeschooled since the age of seven. 11:50:36 For two reasons one, because of the harm that happened to him. But the other was because of this racialized aspect to school. He was not being educated he wasn't being taught anything, I was supposed to accept that he was going to get a certificate, 11:50:54 when he was 21. That said he attended school. 11:51:00 I didn't understand why I he wasn't given a goal, even if that goal was literacy. 11:51:10 Okay. 11:51:21 Literacy 11:51:14 Set goals! No, it was going to be. I was going to accept the fact that my son was never going to make any kind of Educational Progress. That relieves them from obligation to educate my son. 11:51:30 This whole incident -- my son's first seven years -- 11:51:35 made my daughter, leave what she was doing, stay with him when I was home educating him and then go back to school and get a Masters in special education for low incidence, high support needs, children. 11:51:53 Because she felt that the harm done, because it was done early in her brother's life, impacts his entire life. 11:52:03 And we have spent the rest of these years trying to compensate for it. So yes, I hope I answered the question. [Kate Fialkowski] 11:52:13 I really appreciate you know I just really appreciate your, 11:52:20 you know, your honesty total honesty and answering the question too, because these are the kind of conversations that we need to have. 11:52:30 And, you know, I appreciate you mentioning Lydia XZ Brown, I just want to mention to everyone that I've put Lydia's information. 11:52:39 She has a website LydiaXZbrown.com 11:52:44 Lydia. 11:52:45 They, I'm sorry. Lydia is also known as Autistic Hoya, I'm going to spell that, and they publish under Autistic Hoya as well. 11:52:57 I'm watching the clock and I just want to make sure to leave time for a few more questions. 11:53:03 Debbie I have a question for you. And the question I'm going to kind of blend this with a couple of things that I've seen is, and the book. I'm 11:53:17 in the parent stories. So parents as activists and with children as activists. 11:53:25 We have heard about parents, who really are talking about the diagnoses, or, you know, just medical things, saving their children's lives. 11:53:42 I'd like you to speak though, about the individuals with disabilities. 11:53:49 And what kind of stories, should we be telling in our activism? 11:53:56 So what what stories Should we tell in our activism, as people with disabilities? [Debbie Robinson] Well, there, there are plenty of stories out there about people's lives, and we named some of the books like the Roland, Roland Johnson, um, you know, and we all put our 11:54:17 stories out there it is videotapes about our stories on different things in different topics. 11:54:25 People are using for education periods. 11:54:32 You know with our faces on there. 11:54:34 And there's a lot of stories that we share that we didn't share. I also have. 11:54:43 Cerebral Palsy, as I understand it, my mother was told that my parents was from the doctors to put me in an institution. That never happened. I was xxx from home, and with all my brothers taking care of me and all the operations I've had, you know, 11:55:03 You know, that's what we did. But there's a lot of stories and there's a lot of stories mixed up with other stories and the thing also, you get parent stories, you get professional stories, Justin Dart stories -- how we get justice for all. 11:55:22 Uh, you know, and, you know, and, and everybody shared their life stories about what they were dealing with and also some things like, What are we going to do about it? 11:55:37 What are you going to do about it? 11:55:40 So there is a lot of videotapes, and I'm glad Temple and other's are using our stories for education periods also, you know in their classrooms. 11:55:56 We mixed it with with parents stories, professional stories, and people with disabilities stories. [Kate Fialkowski] 11:56:09 Thank you, Debbie. 11:56:14 Um, okay, here is another question. This one was submitted anonymously, and particularly for the autistic community. "It's so hard to counter the medical model and all the misinformation about our experiences. 11:56:36 When the professionals, also refuse to ask or listen. 11:56:41 What do we do about this?" 11:56:51 Misinformation. [Debbie Robinson] 11:56:55 Oh well, I'll take quick. I know, and I think that was the problem. That is why the parents, the young parents had that I haven't met. 11:57:17 Please institutionalize, the young ones, and, and, and, is because always misinformation and I don't know where it's coming from. And that's why we need more of this stuff. 11:57:22 We need to get the truth out by our stories, and and how we can work together and come together and that we're not the bad people. We're not trying to tell you what to do with your son or daughter, or anything. But we need to get the truth out and. 11:57:45 And the truth is that is through our stories through the video tapes to stuff like this. 11:57:54 And we all need to come together and work together and why we can't come together at the table at some things like this, invite the opposition. 11:58:05 And I would like to put that out there, because I would like to know what's been said out there. Um, what's the myths? What, what, I have no idea. But I think we need to come together like this here, like we're here today to find out what the myths is and address 11:58:29 it and and put the truth out there. [Kate Fialkowski] 11:58:32 Thank you so much. I think that is kind of a great place. 11:58:38 You know, to just stop for a second, I want to bring the other panelists back into the spotlight if I can, so I'm giving you a two second warning. 11:58:48 Okay, everybody is back. 11:58:51 And, um, I just want to say thank you so much for everyone Kerima Deb. Allison Richard and Pam. Thank you so much for participating with us to talk about this book allies and obstacles, disability activism and parents of children with disabilities. 11:59:17 Thank you so much. And it was awesome to have not only the authors of the book with us today, but people who are like actually living the life and telling the truth and navigating difficult complex exhausting situations, and we just appreciate all of 11:59:39 the work that all of you do. thank you so very much. Allison Do you have a last word? [Allison Carey] 11:59:48 Thank you to temple thank you to Kerima and Debbie. 11:59:53 And thank you to all the participants who spent the morning with us. We really appreciate your time and spending this time with us. Thank you. [Kate Fialkowski] 12:00:03 Thank you so much. Thanks everybody. And we will send out with a follow up information to everybody who attended. [Allison Carey] 12:00:13 Thank you everyone. [Debbie Robinson] 12:00:15 Bye.