This is being provided in a rough-draft format. Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.
ARLENE KANTER: Thank you all. I'm Arlene Kanter. I will moderate and participate. I'm a white woman with gray hair who looks probably a lot older than I feel. I have glasses and I'm wearing a black sweater and top and I'm really happy to be here. So thank you so much. The Disability Rights Movement has been hailed as a great grassroots movement, permanently burned into our memories are images of Judy Heumann and others dragging themselves up the steps outside the U.S. Capitol in 1973 demanding the Senate and House at the time issue regulations implementing Section 504 of the Rehab Act, the first federal law outlining discriminations against people with disabilities.
Since there then there have been sparks of protesting organized by and with and led by disabled people, particularly in support of the ADA. Indeed the ADA would not have been written but for the organization of disabled people and their allies and at that time with the help of democrats and Republicans, if you believe it. I often wondered why disability was not included in the Civil Rights Act of '64 and it's a question I ask my students each year.
I'm afraid to repeat some of their responses here, but clearly there were disabled activists at that time during the civil rights movement. Then Senator Hubert Humphrey tried to include disability but he failed. He failed because no one then saw or admitted that disability was a civil rights issue. Then and even now, here and in countries throughout the world, disability remains a medical and charitable issue, not an issue of civil rights. We in this room know differently.
We have seen abuse, mistreatment, discrimination, unequal treatment and simple unfairness to which children and adults with disabilities have been subjected and continue to be subjected today. It's why many of you, many of you, focus on bringing court cases to challenge the ableist status quo, to force employers, states and localities, private companies, and even the federal government, to change their practices and attitudes about disabled people. No question over the past decades, our disability law Section 504, the IDA, ADA, have resulted in greater access to society for people, access to education, jobs, transportation, technology, buildings, services and programs.
Our organizations many of them our ABA has disability sections, law school offer disability courses and there's a new association at the American association of Law Schools including faculty with disabilities and a new student organization, the National Disabled Law Student Association. This is all great news. We've begun to realize the goal of the ADA. To provide a clear and comprehensive mandate to the elimination of discrimination. But is the elimination of discrimination the same as equality? Equity? The right to belong? How have the efforts of the disability rights lawyers, today affecting post positive change for society what lessons can we learn of the past that may guide our actions in the future, including lessons from the missteps or failures that should have been avoided. That's the topic of this plenary today.
Given four decades of litigation, why are people with disabilities still routinely subjected to inequality, injustice, ableism. Why are we still fighting for disabled people to have a seat at the table to be heard. What is the role of allies in the movement? How can we hope to achieve greater equality and greater justice in these times of retrenchment by the courts and legislators? In short, how has justice continued to elude so many people with disabilities, particularly those people of color, in war zones, and those who are struggling to find a job or even access to quality education.
Our panel will now probe these issues. We don't have the answers, we have a lot of questions. We would like to take a look back, not merely at the ADA, but even before that, at the beginning of the development of disability law, to ask what successes of the past can we learn from today and what were the challenges that remain challenges today. In short over the next few minutes we would like to explore with you the lessons we can learn from the past so we can project the future. Our panel here will proceed as follows. First Bob Dinerstein, long time director of disability rights clinic, will recall for us the beginning of development of disability law as a field of law and as a movement and its challenges, successes and missteps.
Next Professor Jasmine Harris from UPenn will project us forward to suggest ways in which the lessons of the past can be used to address the issues in the future. What are the issues of which we should be aware, and how can we as the disability bar, prepare for the opposition.
I will briefly comment how in many ways our view of disability rights and justice are limited by our legal system. So how do our own laws undermine efforts to accomplish true equality and justice? What else should we be thinking about beyond what our laws allow, as we plan for the next decades of work to achieve disability rights following my comments, you then have a job to do. We will pose to you, the audience here, a question to consider, which we'll then explore together as a group. And we are greatly influenced by the great clinical director and experiential educator, Professor Dinerstein. I apologize to those who are Zooming in that we can't include in this way or accept your questions.
I want to thank Bob and Jasmine for joining me on this path today. Thank you to the National Federation of the Blind for hosting this meeting this year, as you do every year. And thank you to my wonderful students Maddie and Char and Versi who are here today, and thank you all today, the lawyers, who day to day do the work for justice and rights for people with disabilities. So thank you for being here.
ROBERT DINERSTEIN: Thank you, Arlene. I am a white male of an uncertain age with whose bald has a beard which used to be pepper then salt and pepper and sadly is beginning to be are pretty salty. And I'm wearing the traditional male garb for conferences, blue blazer and button down shirt and I use he/him/his. I want to say since Arlene give a great introduction she did not say that you are unable to leave the room once we ask you to start working with each other, because otherwise you would completely mess up our presentation and you wouldn't be allowed to go to the reception afterwards as I understand it. So just remember, you are here perhaps against your will, but you're here.
So I've been given the task of talking a little bit about some of the origins of the disability rights movement, in particular the legal aspects of that. Of course as a whole, as Arlene indicated, there's a whole kind of social movement part of this, which is critical and which often worked hand in hand with the legal side. And there are many points at which one could begin and what the origin story is, but I want to go with one that really was very critical to my own work. I was a line attorney, a trial attorney in the Civil Rights Division in the Justice Department from 1977 to '82 and our main focus is what we would call now institutional reform organization. So large cases brought by The Justice Department or class actions in which the Justice Department intervened or was sometimes just insinuated itself into the case informally, which happened as well.
That looked at the state of play, so to speak, in state institutions for people with psycho social disabilities, people with intellectual and developmental disabilities and people in jails and juvenile facilities but I'm going to focus today on people with disabilities. And these are cases that almost for many of us are iconic and we can just name them by one name. Wyatt, Willowbrook, these are cases that were brought in all cases by private plaintiffs and sought to, in the first instance, challenge conditions within institutions. Institutions which had grown large which had begun as reformist institutions, so to speak, back in the mid-19th century. But over time became at best custodial, and often much worse. Did not actually even deliver on the custody aspects. And people were institutionalized when they did not need to be, they were abused, they were physically restrained, they were se included.
These were cases I can tell you from personal experience, at the end of the day you wanted to take a shower and throw your clothes out because you felt so sullied by that experience. And particularly because these were human beings who were here. And even people who seemed like they were very disabled, you would learn especially in talk with experts, many of what you were seeing was not their underlying disability. It was being institutionalized for so long. I can remember going through a facility in Connecticut and we came up to a young man and we looked at his medical record, which we could do, because we were with the Justice Department that said this person does not, you know, communicate. He's very seriously disabled, he can't be living in the community. And we just walked up to him and started talking.
We had a perfect conversation with him. You kind of wonder whether we were talking about the same person. Or a young person in Oklahoma who was about 12, and again seemed very capable. We looked at his file and said why is he here and the file said he is in the least restrictive environment. When he turns 18 he will be able to be placed in the community. Nothing to do with his capabilities, his capacity. It's just they didn't have at the time any place in the community if you couldn't go home.
So those cases for me were transformative in the way I thought about people with disabilities. And I learned so much working with colleagues at the Justice Department, colleagues at the then called mental health law project, now the Bazelon Center for Mental Health Law, P&A's, legal services and the like. There was a real partnership there. And there was clearly success that was achieved in this period. Just to give some examples. In 1967 was the high point of the number of people with intellectual developmental disabilities and large conjugate facilities. There were a just under 200,000 people at that time. By 2019, 16,200. That's a pretty major distinction. You can find similar movements with regard to psychosocial mental hospitals where the high point was 1954. About 550,000 and much fewer later.
There's consequences which I'm going to talk about. So there were definitely huge achievements there.
Some of those achievements hit a wall. I would say in 1982, when the Supreme Court decided the Romeo case, a constitutional case that was perceived to be limiting in many ways the rights of people with disabilities. It upheld some rights for sure, but it also limited those and limit the interpretations of those rights that were in my ways very problematic. And to my thinking we didn't really recover from that, a 1982 case until Olmstead in 1999. That's a pretty long time to be out in the wilderness.
There were other cases during this period that were huge importance. O'Connor versus Donaldson with respect to the requirement of dangerous in, add versus Texas, and other cases. We also of course had important legislation, which during this period, the Architectural Barriers Act of 1968, Section 504 of the Rehab Act in 1973. The Education For All Handicapped Children Act in 1975, Fair Housing Amendments Act of 1988.
Civil rights of institutional act in 1980 and of course the ADA and others. We had regulations, we had guidances, we had enforcement efforts by both the federal government and private citizens, many of which achieved significant results. As time developed, as things developed over time, we had important contributions by academics including my colleagues up here with respect to the rights of people with disabilities, became an important subject matter to write about and to influence public policy.
The leader of which I suppose given where we are today, we should knowledge is Jacobus tenBroek with his iconic article the Right to Live in the World which is really much of what we're talking about. Incredible lawyers, who maybe didn't call themselves at the time disability rights lawyers, but people who were so instrumental in producing wonderful cases. Not a lawyer, but Geraldo Rivera who was critical to the opening up of Willowbrook to people's attention. But all this was great and we approved many results and when you look back retrospectively say not bad, but we weren't perfect and we made a number of choices that I think in retrospect not necessarily wrong at the time but have had other consequences. One certainly continues to be controversial and that is deinstitutionalization, particularly with respect to people with psycho social disabilities.
Not that it was wrong as a policy, although some would say it is. I certainly wouldn't. But we didn't follow through with the kinds of community based supports that were needed to make it work. And as a consequence, we have problems with homelessness and other situations where lack of affordable housing and supports puts people in situations that no one would think is really appropriate. I think we were maybe too willing or I don't want to say too willing, we looked at the availability of litigation and courts, federal courts in particular to vindicate the rights of people and I think that was I think the right strategy. But as we've seen over the last fee yours, the growing conservative nature of the physician judiciary means you have to have a different strategy and we maybe took a while to get that. The role of the federal government was critical, but it was very subject to who was in charge at the time.
In fact, the section I worked in, special litigation section, was created under Richard Nixon in 1974 and that was great. Ron Reagan came in in 1981 and it was a little different time and a different approach. As we were there thinking okay, the administration is coming in, they're going to be not great on racial discrimination, probably not great on gender, no one was talking about LGBT at the time but disability, who could be against that?
Well, we didn't anticipate what I would call the federalism or federal revolution federalist society and the groups that said why is any particular thing we're asking for a matter for federal law. I recall a conversation with one the assistant attorney general, his chief assistant who I won't name, who asked when we were asking about what to do in a case we were proposing to intervene in. Said why is there a federal interest in people in institutions receiving food, clothing, shelter and medical care. I'm not sure how you answer that question, and I didn't have a good answer to it, that someone could even ask it is kind of appalling.
I think that we, over the time, I mentioned some of the cases I thought went very well. There were some cases that didn't, and some of the cases that didn't go well maybe were because we didn't do a good enough job in being selected by the cases that were brought before the Supreme Court. Southeastern versus Davis being one. I think that we because of the initial focus on getting people out of institutions, which I still think was the right thing to do, I think we were slower to figure out well what should the community look like for people with disabilities.
For one thing, at the beginning I think we were too willing to accept what I might call mini institutions in the community, large group homes, larger than anybody, more than one would live with if one didn't have a disability and over time we've kind of evolved to that and moved to smaller, community based settings. However I'm not sure we ever got to what I would say is an important point. And that is it's important to not just be in the community, but to be of the community. Another way to say that is the importance of belonging. And I think we haven't done enough on that scale and we have to continue to work on that.
Another late developing issue, which is critical right now, and I think one of the last things I'll say, is an awareness of some of the problems with the kinds of historical ways of dealing with people with disabilities, particularly here I'm thinking of guardianship and conservatorship that's been an issue for a long time. I think the disability world, which is now deeply engaged in this issue, with its principal alternative supported decision making it took a long time to get to that point and I think we were probably remiss in doing that.
So I'm going to stop there. But I think those are some of the things, I think a mix of I think success and failure. I think that any approach that one takes at a particular time can't just be replicated without thoughtful concern. And I know that my colleagues will enter that part of it. Thank you.
JASMINE HARRIS: Thanks, Bob. I would like to segue from Bob's discussion of some of the points of our history and some of the points of reflection to thinking a little bit about the history in light of the present, and then using that to do some forward looking predictions. But to be clear, this is not an exercise in predictions in any sense. No AI or algorithms are going to process what we're doing today, and I have not used any in the preparation of this speech.
ROBERT DINERSTEIN: No animals were sacrificed.
JASMINE HARRIS: Yes. But you know, I think I speak here in the collective remarks, I think are really about flaming. So in typical law professor fashion, we're talking you all back into the building and asking questions and making things problematic without actually proposing a whole lot of solutions. So that's what we're hoping to do with you during our exercise and engagement. But let me just take one moment to say that I speak today from a place of humility, alongside two incredible legends of disability legal scholarship, and among this community of tremendous practitioners and leaders in disability rights and disability justice.
And just a note on disability rights and disability justice, in terms of terminology. Notice I don't use them interchangeably, but with the hope that we can show some areas of deliberate overlap and those places of divergence. For example, both at the broadest level, disability justice and disability rights, advance the dignity of disabled people and seek to redress social, economic, parallel subordination, but may diverge and diverge significantly in some respects, with respect to the means of the tools or critical points of intervention.
Some people regard disability justice as merely reactive, which is false. It's incomplete and lacks the complexity of disability justice, its origins and its current iterations. Some say disability justice may be for people of color only. It is not, however, exclusive. Rather, as I understand it, it began with BIPOC individuals to center the experiences of previously marginalized communities or groups within communities, and it began with that group to focus on a strategy that looked at wholistically discrimination through the lens of subordination and the move is to move from a to subordination of ableism, sexism, et cetera. That in order to think critically about the future and power you had to look at the structures and center the voices that had been previously marginalized.
So I wanted to say that that's just an opening note, but I will organize the remainder of my remarks in 2 buckets. Inspired by the NCAA time period, and all of you, if you're basketball fans, as am I, are going to be thinking in these terms. One, some notes on playing defense, areas that we should be thinking about, perhaps as a protective area, tang a stance of holding the line. And the second bucket or category is one of playing offense, in areas where we should take an affirmative stance and be a little more proactive and out there. And some areas that have been traditionally outside of our comfort zone, but actually require us to be actively contesting and engaged in debate. And so my hope is to lay the groundwork for some of that during the exercise, and that we can continue during the discussion.
So first, in terms of playing defense, many of these areas, by the way, are things that you may have talked about, that you do in your own practice. My goal here is to take a step back, the 30,000 foot view and put them together in ways that may help us advance the conversation. So the first is procedural rollbacks. The Laufer case, it ended as it did and it was a narrow win in many respects. People consider it a narrow win, but it does not solve the question of the Supreme Court's ignorance with respect to understanding the way in which people with disabilities experienced discrimination, and experienced harm. So it's merely teeing up for the future what will become a standing case, or cases, and go before the court.
And so thinking about playing defense on standing, yes Laufer may have kicked the ball down the road, but it's still a concern.
Second, narrowing legal remedies is something that we're seeing front and center. We saw it with the Cummings decision. We have to think about what areas of damages as well, beyond just the emotional distress, et cetera, that are going to be under attack. Third, protection of existing ADA protections, 504 protections, statutory protections. Those are important, but we also need to attend to the protections under the Affordable Care Act. And specifically I'm talking about, if you think about since the ACA was passed in 2010, there have been over 2000 legal challenges to the Affordable Care Act that's quite a few. Some legal fees in there as well.
But the 2000 or so challenges are not ending, and we're seeing a most recent attack is going to be the Braidwood versus Bacerra case which is working its way up through the fifth circuit and has to do with a critically important issue for the disability community, which is preventative care. So although it gets framed often as this is really about prep and prep and HIV and care for HIV/AIDS, which is critically important, it's also about general preventative care, which we know, in terms of social determinants of help, the empirical data has shown us continuously that this is the intervention that helps and works. So we need to be paying attention to this. And not only playing defense for the ADA, but I would put this in both categories.
Relatedly, the administrative state. I never thought I would say something so broad we need to play defense for the administrative state. Alas here we are. There's the potential of gutting Chevron before the Supreme Court. One note on this. In terms of thinking about the administrative state, we are in a particularly positive position right now, in terms of the ability to get through rule making. It's an exciting timing. The 504 regulations have been discussed and have been revised and they are ready to go in many respects. We, in terms of HHS, in terms of DOE, the department of education, this is a great moment. But we need to hurry up. We need to work quickly. And do the rule making that needs to happen before both an election and the potential Supreme Court decision in the cases that I just mentioned.
So I would say that's something to pay attention to, in particular, not only those environments, but thinking about communications and web accessibility regulations, these are things that we've had on our agenda as a tenBroek community for years and we need to just we need to get this done. I know I sit from the Ivory tower and I'm trying not to throw stones. I'm mixing metaphors, but it's okay.
Another point that Bob raised and Arlene did at the beginning. It's a tough one to raise, which is disability cause lawyering. So many of us in the room are disability cause lawyers, by self definition. Bob told us at the beginning that there was maybe no such thing as a self pro claimed cause lawyer because there was not disability law in the way we understand it today. However, we need to think about strategically, how do we let me say this who gets to decide what cases are brought and how do we think about enthusiastic disability lawyers, the room is growing, no one in this room, of course. But the field is growing and how do we think about bringing cases that, in this environment, might create bad law. And who gets to speak? How do we process that? We don't have a system. The DRBA is wonderful and the list serv is great and we have coalitions, but how do we manage this. We've become such a big, growing community, we need to be thinking strategically about the infrastructure to process these things. Okay. So let me move quickly to
ARLENE KANTER: Keep going. You're okay.
JASMINE HARRIS: So let me move to playing offense. I have much more to say on playing defense, but I'm also going to let it simmer a little bit and we can talk about it during the Q&A and the exercise. Okay. Playing offense. Those areas where we ought to be thinking about affirmative strategies, being more practical, political, or aggressive, if you may.
The first is thinking about something like the buy Canada an case and attorney’s fees. Not something to defend, but something to dismantle. How do we think about Buchanan and what's the strategy for getting past Buchanan and the Buchanan rule with a catalyst.
In addition we talked about this early defensive lawyering point. Many other political movements have some infrastructure, some Supreme Court appellate clearinghouse. This is going back to the infrastructure point. How do we think about the big cases that are coming up before the court? How do we work together to support what's going up? Knowing that lawyers are under ethical obligations to their client, and I get that. We all get that. But how are they impact cases. How do we identify them, how do we process them, et cetera.
Okay. Health law. Two things I think are on the horizon. The first has been on people's minds. I'm writing in this area, thinking about private equity in the spaces in which we work. Private equity, private money in education and healthcare and the research that is out there now, in terms of the quality of care, in nursing homes, in other environments, where private equity money lies, shows that the quality of care is much poorer than nonprofit owned establishments.
And so we have that evidence, and so there needs to be somewhat of a at least a conversation, coordinated effort, to think about both identifying all of those spaces that we come across, where that private equity money is existing, and then secondly, thinking about how to think across areas and is there room for impact work around the private equity money. That requires transparency and data and we've been talking about data all day, so I'll move to my data point, which is the data point has to do with our complicated relationship with privacy in the disability community.
And this morning, the first panel on AI, Megan talked about how we're somewhat between a rock and a hard place at times with respect to data. We need it, but we also recognize that there's a lack of transparency, there's a lack of privacy for people with disabilities. So they're often asked to trade their privacy for public benefits, for access. So we recognize that. But there is a difficulty. We have to talk about how I'll talk about this in the context of my work for a concrete example. Disability proceedings, historically, have been treated as private. And there is a disability, not only proceedings, but any disability type of materials. So we have one way of thinking about that, which is some information on there may be related to medical information and HIPAA might apply.
But this is not well understood. So you have this knee jerk reaction that if disability is involved, it is seen as private. What are the costs of keeping things private? We don't understand the pervasiveness of disability in society. We don't, have a settlement perspective, we don't have those kinds of precedence, because settlements are sometimes you negotiate and privacy becomes a term in the negotiation itself. And what are the costs of doing that, in terms of information about disability, a success of cases and piecing things together. Another point just to raise about framing and then let's see how I'm doing on time
ARLENE KANTER: You have a couple of minutes.
JASMINE HARRIS: I have a few more minutes. So one thing that we have seen as our communities have grown, as the coalitions between other traditional civil rights groups have grown, is the use of disability law, core disability law such as the Americans with Disabilities Act and the Rehab Act to frame harm and other settings that haven't classically been understood as disability related settings. So we've seen this in the prison context, as you see rights narrow in terms of the Prison Litigation Reform Act. You see ways in which these now are becoming disability issues, and for good reason. The populations are people with disabilities.
But in some way we haven't quite wrestled with what is the implication of individuals from other areas who may not be as familiar with disability rights law and what's on the line and the stakes, reaching for disability laws and deploying disability law in these spaces. Does it dilute the overall power of disability law? Will there be additional backlash? Will it create lasting unit with other civil rights groups? But these are really hard questions. And so the point, as we were preparing for today, one of the big things we were talking about is, let's put on the table some of these really hard issues that we don't necessarily wrestle with. And get a sense of what do we do? How do we think about them? So that's idea of disability framing.
And one way that this has come up, politically, has been to look at some of the political movements around abortion or looking at the political movements around assisted suicide, and how there's a likelihood for, you know, unlikely bedfellows. But is that something that we ought to be seeing as a possibility? Are those partnerships that we ought to engage in? What are the dangers? Et cetera. So I'm going to do just mention two very quick two things before I turn this over to Arlene.
One is, what is understood as disability law as changed. So we're a little bit selfishly positioned to mention this. But if you think back to your own legal education, disability has been sigh lowed. You maybe didn't even have a disability course in law school, or if you did, or if you had a disability clinic, you were quite lucky. Those are rare, it's like unicorns. But think about the way in which that siloing gets perpetuated and reinforced and exacerbated in practice. So if the goal is mainstreaming disability as a concept, as a legal base, as a set of tools and remedies, then we ought to be thinking about restructuring legal education in a meaningful way.
And yes, you might say great, go talk to the Association of American Law Professors. We will and we have and we will continue to do that. But it's important to talk about it in this room as well because some of you have diverse practices that are not just focused on disability law and when an issue comes up that may have a component related to disability, I'm sure you have colleagues who are oh, let me send it to X person because they know disability. And the goal should be no, let's have everyone here talk about the disability component and work through it together. So that it becomes just a part of a general practice.
And finally, we need to be thinking more critically about building political power. There's been talk about a disability super PAC. I will through that out there and say I have not heard any more about the disability Super PAC but part of what we're doing as lawyers, as academics, is thinking about shifting political power. And we're starting to have the numbers. And so it's time to be thinking critically about the actual political power piece. Thank you.
ARLENE KANTER: Thank you. Thank you. So we had the history, we have the litigation strategies and ideas for the future and I want to kind of burst the bubble and say how do we get out of the structure that we have here in the United States regarding our laws. And how frustrating it can be. But exciting when you talk to people in other countries, which is what I've been doing for the past 25 years, I guess now, talking about how the treaty on the rights of people with disabilities, the Convention on the Rights of People with Disabilities is being implemented in different countries and what we can learn from what's going on in other places.
So the first thing is we still have, I think this very constrained definition of disability in the ADA, the 504 and the IDEA. Okay. The ADA was designed not to incorporate a medical model of disability, clearly in eastern Europe they still can assign percentages of functioning body parts. We don't do that. But and the ADA is trying to identify barriers that should be removed in order to achieve real equality.
But still under our own laws, an individual has to establish that they qualify as disabled and that they qualify for special treatment accommodations, because of the medically diagnosed condition. So to me, while the ADA has been heralded as a great universal way of challenging barriers, it still applies only to a very limited group of people who are seen as qualified within the definition, and it requires those people to present documentation to prove eligibility. It's demanded. Particularly in the workplace. And as my colleague at Syracuse now has written about, she argues that disability should be recognized without documentation in some contexts, certainly in higher ed.
I would like to ask what would happen if we assumed that disabled people are disabled by society, the social model. That creates the barriers. And that they could then be provided with the services and accommodations they need. Based on research by another colleague of ours, we know that the sphere of people faking disability is really overblown. So what would happen if our definition was a lot more broad? In the education context too. Students have to prove they're disabled, some year after year, in order to qualify for services under the IDEA through high school and 504 in higher ed.
A student of mine once said to me I have cerebral palsy that was diagnosed shortly after I was born. The university wants me to continue to submit my documentation year after year. I mean what a waste of time and effort. What would happen, what would be so bad if students were provided supports and services they need because they ask for them. And so that's how they can learn and we can support them, because we want them to learn. Would that be so bad?
Further, we love that the ADA focusing on the individual inquiry. We hail it as part of our major achievements. The employment context, an individual inquiry is required regarding a request for accommodation. But there are other ways of thinking about it. How could we achieve greater collective action maybe with more aggressive use of class actions, for example. Class actions present problems, not only numerosity, but when judges want to view the particulars within a class, the class could be defeated. Are there strategies we could think of where we could utilize class actions more aggressively.
There are other countries, I just got back from Brazil, where class actions are brought by the government on behalf of individuals so that individuals don't have to be the ones who show up and explain what their particular disability is. It alleviates that burden on people. I like the sound of that. In employment, even if the individual qualifies for protection under Title I for example, they still have to show they have the necessary job qualifications to do the job, and will be viewed as unable to do the job, like everyone else, or until some special accommodations, adjustments are made to the normal working rules and conditions of employment.
But we all know, the special arrangements are made all the time for people without disabilities. Go ahead, take a couple of months. Your parents are sick. Come back when you're ready. Collective bargaining agreements get priority, privately negotiated agreements, informal systems of nepotism, by the way. But it's the changes or accommodations that people with disabilities seem to need in order for them to participate on equal footing with non disabled colleagues that requires scrutiny under federal law.
So these are just a few examples that even with the passage of the ADA, and the ADAAA and its more liberal definition of disability. Equal treatment for many disabled people remains elusive. I think the recent pandemic highlighted that for all of us, when many more disabled people died and continue to be at risk today with long COVID, especially people with disabilities with color and who are incarcerated.
The other problem generally with the ADA is it was never designed to address substantive equality. It's designed to address equal treatment, primarily to get people off of the roles into jobs so they could be productive tax paying members of society. I did a lot of research at one point in the history of the ADA, interviewed people who were involved in it. And they admitted readily the purpose was not to achieve equality and inclusion, the purpose was to create a mechanism to remove barriers, particularly in employment. William pees who is an active who has passed away wrote once of course the ADA has helped many people with disabilities but when the gains are measured against the daily realities experienced by those with disabilities, the law merely calls the attention to the gross lack of equality.
Ableism undercuts our entire law, legal system and country, I would say. Ableism is that system of beliefs and actions based on the idea that certain abilities or ways of being are better, superior than others. It denies people with disabilities their right to be treated equally and with dignity in the workplace and in society. So that even with the ADA today, the statistics are not great. Right? Nearly one in three people one in three people with disabilities live in poverty. Twice as many as people without disabilities. Only about 18% of working age people with disabilities are in the workforce, and many of them are underemployed. That's unacceptable to me, especially in a thriving economy like ours these days.
Attitudes get in the way. Discriminatory attitudes. In one study, and many studies, not only in one study, it shows that people with disabilities who are surveyed, reported that they encountered disability discrimination in the workplace, they're paid less. But the main barrier to they're being hired are the attitudes of the potential employers.
So given the limits, what I think, of just our legal structure, system, ways of thinking, what can we learn from experiences in other places? And I'll be very brief with just highlighting some areas that I think I want us to think about. Because I think there are legal strategies in this country that we can use to expand the rights which is going on in other places.
So in 2006 the UN adopted a treaty on the rights of board of directors. We have not ratified it. 186 other country by the way in the EU out of a total 193 have. You know that the United States has a horrendous record of not ratifying treaties. But notwithstanding the fact that we are not a state party to the treaty, are there ideas and principles that we can learn from? Number one.
This treaty for the first time recognizes a right to support. A right to support. People have a right to get help, to exercise their right to make decisions. They have a right to support in the community, a legal right to support in the community, so that they cannot just live in the community, and be part of a community, but where they can exercise a choice to live, equal to people without disabilities. Radical concepts for us. But how can we start incorporating that into some of our Olmstead strategies, I would ask. Support for families.
We don't recognize that families with disabilities may incur extra expenses. We don't have a system for that. But yet, families incur incredible expenses making homes accessible, providing support services. Those are social rights. Social economic rights that we don't have a history of protecting, but other places do. How do they develop those systems and maybe how can we expand our thinking in that area?
The right under this treaty recognizes a right to work. Wow a right to food, a right to shelter, wow. A right to those things. Accessibility. It's not just about entrances to buildings. It's accessibility, quote, and usability. And if all the buildings that are ever built are made accessible and useable, then you don't have to worry about suing them after the fact. And that's happening in some places. Technology, right? We know that website accessibility remains a problem here. And in fact, copyright laws have remained a problem here. But there's a treaty that says you're not violating copyright laws when you make texts accessible to all.
The right to political representation. Yeah. We have the right to vote, we heard about it this morning in our very first plenary. The right to vote is critical. But now what? Do we also have a right to see representation of people with disabilities within our government? Five countries in the world now have quotas requiring 5% of government representatives in parliament to be people with disabilities. How are we organizing around that? Because unless we start being more politically active on the local, state, as well as federal level around disability issues, we may be losing some of our momentum.
Intersectionality. Intersectionality has always been I think a problem in the disability rights movement. As we know from the Crip Camp documentary, the disability rights movement really began among mostly white middle aged children of white middle aged successful parents who got to go to school and when they ended up in society, they realized society was not very welcoming and they organized.
Where are people 8 color in this movement and how do we work with, as a strategy, those who are advocating against racism? I think this has been one of the lingering problems, and I mentioned to my colleagues here that we had a case in our clinic years ago of an older Black woman with a disability who was fired by the county. She didn't want us to choose her identity. She wanted to sue the county because she was an older Black woman with a disability. Why have we not yet figured out a way to incorporate strategies that allow people with disabilities to be true to their own intersectional identity?
To more points and I'll stop. Awareness. This treaty also has, for the first time ever in a treaty, a requirement that state governments develop programs to raise awareness about disability rights. How are we doing with that, with social media, about efforts to raise disability rights. When our cases are won do people outside of our small circle even know about them and are aware of them? And more importantly, are they aware of the deprivation of rights that still go on today?
So while the U.S. has been hailed as a forerunner to progressive disability rights laws, the scope of the ADA in my view, and the continuing narrowing by the Supreme Court of the rights provided, as well as the lack of 14th Amendment protection as a right to equality, is applied to people with disabilities, continues in my view to limit the promise of equality and inclusion for people with disabilities. For that reason, I would say that to you, to all of us who are disability rights or justice lawyers, we need to think beyond the limits of disability law, to support and work better with disability justice movement, and other social movements.
As a friend an frequent contributor to this tenBroek symposium, the late Adrienne Ash made the comment. We need a disability movement not because disabled people are so special, separate or unique, but because we must let people know about the desire and the right to be part of the world from which we never should have been excluded in the first place. Thank you.
So that was me. Now, what are we going to do? We're going to open it up. Do we want to respond to each other first or do we want to open it up to the group?
JASMINE HARRIS: Do you want to do a pair and share for a few minutes? Sure. So this is the point where you have to participate. Please. So we want you to do an exercise called pair and share, which is just talk to the person next to you, or around you, and take 3 5 minutes. And the question that we're going to ask you is, what do you think are the main issues or areas where this field should be headed? So step into the shoes of where should we be going, and you can respond to us, what did we leave out, what did we perhaps not give enough attention to. And think about that, and talk amongst yourselves for 3 5 minutes. And then we want to hear from you. So we'll get the microphones going in that time period, and we'll start to pass them around.
ARLENE KANTER: So turn and talk. I call it turn and talk, just to the person next to you, just reflect on what you're hearing, what resonates, what doesn't.
JASMINE HARRIS: Remember, no reception for people who leave.
ROBERT DINERSTEIN: Okay. Time is up. So please turn around. If your back is to us, pencils down if you're taking a test. We know as teachers when we divide up our rooms like this, the hardest thing is to get people back. Actually you guys did good. Give yourselves a hand for that. There you go. So I think we don't have a really great game plan here except that we wanted to just go around for those who feel comfortable telling us what you decided. If we can have somebody pass the mic around. We see some hands up.
If you would just say who you are when you stand up, so we do some networking while we're here.
Attendee: Hi, my name is Qudsiya Naqui. I'm senior counsel in the office for access justice I'm a south Asian woman I'm wearing a black suit. One thing we talked about we thought we maybe haven't touched on in the panel was law as a blunt instrument and the need for law to work together with storytelling and culture change to address those kind of attitudinal barriers we face. We can have all the settlements and the policies on the books that are excellent but if we can't get the people who implement those policies to change their attitudes, then we get stuck. So I just wanted to share that as something we talked about.
JASMINE HARRIS: Thank you.
ROBERT DINERSTEIN: Just as a variation on that, in the institutional reform cases that I've mentioned, we've quickly kind of evolved or transitioned from improving institution to get people out. We knew if we started out talking about living in the community, group homes, it wouldn't sort of grab the judges. The first thing to go through was talk about how awful these institutions were, and that wasn't hard to do and bringing in photographs and other things to show how bad they were. And once you sort of got the judge's attention, it was like there are alternatives here. And we would bring in people who knew about community based services, and photos of that, tours of those facilities. That really was about narrative, about storytelling. About what you're seeing here doesn't have to be as bad as it is.
ARLENE KANTER: If we can give the microphone to the woman in the aisle.
Attendee: Hi, this is Julia. I also use them/they pronouns so person would be better. Thank you. I am a white person with a beige suit and brown hair. So one thing that we talked about is more specifically with like action items. Something that really drives me insane is when we actually can do a step every single day, and it sounds cheesy, but it's not, to do better. You just said that why is it so hard to give accommodations without documentation? Aren't all three of you professors?
ROBERT DINERSTEIN: I'm retired.
Attendee: So all you have to do, quite literally, all have you to do is do what the art field was doing for years. I've never had real documentation to the legal field, and you make it open that students can go to you and say, I would like I need to be able to leave class by the way, I need this, I need CART, whatever. And you just allow it without any formal documentation.
JASMINE HARRIS: The three of us do that.
Attendee: Then everyone else in the room should do it too.
JASMINE HARRIS: We have our students here too. So students, if we're not doing it, then tell us.
ARLENE KANTER: I just want to say, I also have an appointment at the inclusive ed programs where they require people getting master's in teaching not to distinguish between special ed and regular ed and the theory is all teachers can teach all students, and it's something we talk a lot about at the law school. So it's on us as teachers to make sure every student can learn which means I would go beyond accommodations, I try and adopt universal design in learning, where students really can have access, regardless of maybe what limitations they have, to realize what potential they have. So thank you for that. What did other people talk about? We know you were talking.
ROBERT DINERSTEIN: They were talking about which teams they had in the pool.
Attendee: Hello, Char they/them. We were talking about practical lawyering aspect you talked about earlier. It might like which I feel like is definitely very important. You can whatever novel argument, you can do proposition that would bring, widen the movement, make the world better. But if it ends up on a national scale, like does it still count as victory? Potentially other cases going up to the Supreme Court that might have negative impact or have had negative impacts in the past, it's definitely very important that maybe it's as the lawyers for the movement, we would be more selective and practical again the current situation with the Supreme Court.
ROBERT DINERSTEIN: You know, a well known disability case, the Cleburne case, which sort of fits this thing, right? Because many people, disability rights lawyers or academics looked to the case and said oh, it's a loss, because the court rejected heightened scrutiny in assessing equal protection for people with intellectual disability. And that was sort of part of the holding. Then, however, the court went on to actually analyze the situation in particular, which was whether or not a group home could be situated in the community and actually said that the county that the ordinance, in the case was unconstitutional.
So that led people thinking it's not just rational basis it's rational bases with bite or with teeth or something like that. Which for a while was a good strategy. The reason I mention is it I had a colleague who knew the lawyer who brought the case, afterwards he got the commentary about what a bad decision and rejection of this doctrine turned to my friend and said I don't know I must have missed it. I thought I won the case. Because he won it for his client.
JASMINE HARRIS: Another way to frame the question to you all is one strategy that we've been talking about, in different sessions all day, is how to work across academia and practice so that we support the work that's being done. And so even using this as an opportunity to say hey, you know, in my work, there are these big questions that come up. These empirical deserts that we need in disparate impact cases and just kind of using this time to brainstorm, which is really what we were trying to do. We don't usually have enough time at these events to do this. So this is really group collective brainstorming session where we can talk to each other. That produced more hands.
ARLENE KANTER: Microphone is coming your way.
ROBERT DINERSTEIN: We're doing this mainly to give exercise opportunities to the staff.
Attendee: So I wasn't going to say anything. I've already introduced my appearance. Rights, having rights is a good beginning. And you surely want them. But it isn't enough. And unless we get beyond having rights as the objective, I mean, it's not a bad thing to have rights. We've got to have those. It's a nice fundamental part of it. We must get beyond it. So one of you said we've got to get into Congress, which is a great idea. And also the city council and so forth.
We also have to get on television and in the movies and things like that. The thing that it seems to me is con spec with us by not having been emphasized, although it's surely part of your message, because you say things like not having education that's divided into special education and you know, the regular sort, is that people with disabilities have to be recognized as elements of value. They have to be fun. There has to be something wonderful about them. Otherwise the charity model stays.
And the charity model, the rights, as many rights as you get, it will never be enough if the system of the charity model stays in existence. And we have to think of mechanisms to get this law to help us encourage participation at a level high enough that we can show the wonder that's part of the lives that we hold.
Attendee: Hi, I'm Deepa. We were talking about we were talking about how low employment rates are for years, for decades, among the disability community. And we were talking about how we need to do something about that. I'm sick of hearing about the low employment rate and just not figuring out what to do about it.
And we were talking about ideas like how can we increase the employment of people with disabilities.
Speaking of the legal profession, because I'm an attorney with a disability, I think we can have efforts like making sure disability is part of diversity. A lot of firms and various places in the legal profession conduct diversity surveys, they have diversity requirements or they're starting to and they have diversity discussions, and making sure that disability is a part of that would be a good start.
Also kind of trying to have some sort of we don't know exactly what we were talking about ideas, but having some sort of education campaign for employers in the legal community about the capabilities in different techniques on how people do their jobs who have disabilities. I can't tell you how many questions I get, even from lawyers, how do you do research? How do you litigate as a blind attorney? So just having some sort of education campaign, making sure that, again, people are part people with disabilities are a part of politics, so we can have more judges with disabilities would also go a long way. So we were just discussing those sorts of ideas.
ARLENE KANTER: Thank you, Deepa, such important ideas. And a couple of comments. Number one, from where we're sitting, it means getting more students with disabilities in law schools. And that's something that I've really, I think a lot of us, the three of us here, are very dedicated to. It means really recruiting, sending out a message. We want you to become lawyers. Come to our law school.
And then yes, working with law firms, whether it's a career services office, faculty, others, so that they are 23409 just welcoming, not just accepting, but welcoming students who are graduating because they're going to be great lawyers, with or without disabilities. DEIA is what we should be seeing and frankly I've been seeing DEI and accessibility isn't all about disability only, but it shouldn't be omitted anywhere and it really is a problem. I did research after the pandemic about remote work opportunities and ended up kind of looking at all the court cases, speaking to a lot of people and since then actually working with a variety of people who have been denied opportunities to remote work.
I do think that this new era of remote work possibilities is a way to open up job opportunities for some people with disabilities who don't have accessible transportation, or who have chronic conditions that would allow them to prohibit them from having a 9:00 to 5:00 job because they can take a break and work at night. So the more flexible we are in our workplaces, I think that is a strategy that we hopefully will see can increase employment for people with disabilities. At least a small section.
And finally I want to say training that you mention, we need more training of judges, of lawyers. People are really uneducated. In this room we know we're talking about, it is striking and shocking when you leave this room and you start talking about accommodations, universal design, about qualifications. So I am with you. And I think that we as a disability bar can be doing more around that
ROBERT DINERSTEIN: On the telework point, before pandemic, how many employers said impossible you can't do the work remotely. And then when we had do it, all of a sudden it became possible. In one consequence you're right about the rights of employment. The rates of employment for people with disabilities did go up during the pandemic, and partly it's because of the technology. All of which says, and we've had various sessions today dealing with AI and other technology things, which is one thing we know. Technology can be a barrier or it can be a gate way to true integration.
JASMINE HARRIS: I just have a footnote on training, which is we tend to talk about training all the time, training is in our settlement agreements, training is a part of our national conversation and I think we talk less about the content of the training and the method of delivery. So there is research empirical data out there in terms of what quality training works, but the transfer of information itself doesn't work. So you have someone who's required to take a training on disability of judges, it may or may not yield anything. And so I think there also needs to be a hard look at what do we mean by training and really have it be evidence based.
ROBERT DINERSTEIN: I think we wanted, with the time remaining, people to continue to tell us what you talked about, we also want to give you an opportunity if you have questions for us based on our presentations or anything, really. It's 5 minutes before reception, so anything is open. What's your favorite drink, that kind of thing.
Attendee: Not going to go into my drink. I'm Nancy mayor I'm a short white female with graying hair, short hair, curly hair with glasses and a gray mask and a multi colored jacket and gray shirt. I have so many things. First I think we need to support Chevron, as much as I didn't like it when I was involved in it, and I actually helped to write the Supreme Court brief for the agency, it was EPA and I helped write the Supreme Court brief. Did it as an engineer. Somehow we worked enough, at the time I didn't like the idea of Chevron, but over the years I've enjoyed it better than not having Chevron. So Chevron I think is very important to have, although I'm not proud of my part in it. Because original decision guy was not very environmental.
Another thing is this ableism. Not the way people think ableism and everybody thinks everybody is able. But the ableism people forget we're all just temporary abled if we were ever abled. That's something that people need to be trained on, what you see people can't do, you eventually may not be able to do that either. And it's not altruistic, it's self serving to serve the people with disabilities because you're going to be needing it too. Those are the two things I think are important.
JASMINE HARRIS: Can I say one point responding to that, which I think in terms of interventions, the way in which, for example, amicus briefs can be used, and at least from the legal academy, amicus briefs that focus on educating the court, go to that point. That is to say, to show them that you are temporarily able bodied and if you're so lucky, you can enter our community.
ROBERT DINERSTEIN: The way we sometimes say it is disability is a club that you may be asked to join at any time.
ARLENE KANTER: If we all live long enough.
ROBERT DINERSTEIN: Right.
ARLENE KANTER: I think there's one more question. Do you want us to stop?
SANHO STEELE LOCHART: Not yet. Eventually.
ROBERT DINERSTEIN: No. We're never stopping. Midnight.
Steve Gordon with the United States attorney’s office eastern district of Virginia wearing justice department blue suit, blue tie and kind of salt and pepper hair although it's a limit less pepper. So something that I've seen, I've observed and I do a lot of community engagement type of work, both with covered entity the, but also with people who are protected by the ADA. And one organization the ARK of the United States has a program, teams are being formed and it's building coalitions. It's not one and done trainings. I've tried to do that a bit in my office also, and have helped with the help of the Mid Atlantic ADA center, folks to build pier groups who are in healthcare or ADA coordinators and they're meeting now every other month to talk about issues that are coming up. Because I do have concerns that one and done training has limited effectiveness. It's more effective for people who have been the subject of a lawsuit or more effective if we've the Department of Justice have gone after them.
So I am interested in this whole concept of how do we effectively engage. Because I also find there's people with really serious attitudinal barriers, but there's also people who are very open, but they don't know. And they're reachable and educatable, and as far as I'm concerned, that's even if 12 or 20 people with disabilities are helped, that's a good thing. And then obviously we've got to go after the people who have high attitudinal barriers. And I don't know if there's been organized research or thought about how to have a wholistic approach.
Litigation is obviously always going to be necessary. But these other methods, I think, can be effective too. And National association of the Deaf has done effective things to. Howard has gone out to organizations, like the hospitals to do better job. IACP has worked with the Arc and NAD on developing policies. Anyway, there's other angles in to who would have thought of it as sort of organizing ourselves to understand our way of looking at things. Anyway, it's just another approach, and I don't know if there's been scholarship on it or thought about it.
JASMINE HARRIS: Absolutely. Can I say something? So the first thing is, I would love to get your contact information and can send you some of that information. But the idea, the most effective or most powerful scholarship I think out there on this, in the behavioral science and other areas, and law and psychology or just the psychology piece of it, is really focused on the sustained practice. And so a couple of really I'll just give you one example in the interest of time. Reading groups. You wouldn't expect it, but they've tested reading groups, where it is like a book club. And then you have people come and you pick your books and then you have a conversation about it.
And then over time, it doesn't have to be a year of disability book club. But infusing that in a social setting changes the dynamic because it changes the climate and the culture and you're not talking and you're not receiving information from someone and you're sitting there passively. You're actively engaged and what does this mean for my life and how do I reflect upon it. So there's like a mindfulness piece to it and I just saw a couple of eyes role to the ceiling. Stay with me. The practice of mindfulness infused in some of these techniques I think has been just hugely successful, and scalable.
ARLENE KANTER: I just thank you, important. One other lesson we learned from the international movement was nothing about us, without us. I want to make a pitch here. That I think the most effective trainings is not someone like me who is currently not a woman with a disability to get up and do trainings. When people ask me I say no thank you, I can recommend people with disabilities and I think that's so important that those are the leaders of those training initiatives. We as allies, and I've been doing a lot of what's an ally, is to be in the background to help provide resources, backup, ideas, exchange, but not as the leaders. And even today, as we discussed this plenary, there are conflicts and there are nuances. But I think that the idea of building community means having people with disabilities out front as leaders who are identifying what the issues are is key.
SANHO STEELE LOCHART: Well, all right! On that note. Unless there are any last questions there we go.
[ Applause ]