Peter Blanck and Mike Galifianakis discuss disability law and policy including the area of accessibility in Information and Communication Technology on Capitol View.
July 27, 2019
On July 27th, Mike Galifianakis interviewed Dr. Peter Blanck on Capitoal View Program on Georgia Radio Reading Service (GaRRS). Capitol View is a monthly program to inform you of legislative activity, disability law, and policy that could impact your lives. Dr. Blanck is an American academic, psychologist, and lawyer who holds the titles of University Professor and Chairman of the Burton Blatt Institute at Syracuse University. Mr. Galifianakis is the former State of Georgia ADA Coordinator. Listen as they discuss the history of the American with Disabilities Act (ADA), Dr. Blanck's achievements in enforcing the ADA, the endeavors of the Burton Blatt Institute at Syracuse University, and the potential of universally accessible applications across platforms.
Transcript of Session
MIKE GALIFIANAKIS: This program is ended for a print impaired audience and it's a production of the Georgia Radio Reading Service Corps. Thank you for joining us for this month's edition of capital View. I'm your host Mike Galifianakis. Capitol View is a monthly program to inform you of legislative activity, disability law, and policy that could impact your lives. This month I am speaking with Professor Peter Blanck on disability law and policy including the area of accessibility in Information and Communication Technology. Professor Blank is a university professor at Syracuse University and academic rank only awarded to 8 prior individuals if the New York School. He's also chairman of the Burton Blatt Institute at Syracuse University. The Burton Blatt Institute works globally to advance the civic economic and social participation of people with disabilities. Professor Blanck welcome to Capitol View.
PETER BLANCK: Oh thank you, it's really a pleasure to be with you.
MIKE GALIFIANAKIS: Professor Blanck I wanted to start by asking you to share with our audience the story of Burton Blatt and the founding of the Burton Blatt Institute.
PETER BLANK: The story of Burton Blatt, and my story goes back to before the Americans with Disabilities Act was passed in 1990. I'm kind of an odd bird. I'm a Ph D. researcher in Psychology and also a lawyer. For a number of professional and personal reasons, like many of us, gravitated to this new area of disability law soon after the Americans With Disabilities Act was passed in 1990. I have been fortunate to conduct some very early studies on the nature of workplace accommodations, the nature of life in institutions versus community for people with disabilities. The nature of web accessibility, which was still in its infancy at the time. Actually, Tim Berners Lee the inventor of the World Wide Web was writing the 1st reports in 1990 the same time George Bush was signing the ADA into law.
MIKE GALIFIANAKIS: Wow
PETER BLANK: As a result of this research, I ended up in Iowa working at the University of Iowa as a Professor of Law and Medicine and in other areas, and had the great fortune to get to know and work early on with Senator Tom Harkin, of course who was a great Iowa Senator who was one of the drafters of the Americans With Disabilities Act, and began working to understand the rights of individuals with disabilities under this law. Very quickly of course there was new litigation that was filed and I began to be asked to explain some of the research I was doing so that it would help to litigate people's rights. I will never forget I got a call soon after the ADA was passed from then commissioner of the Equal Employment Opportunity Commission, a guy named Paul Miller who was a great disability leader he had worked in the Clinton office. there was a case in Madison Wisconsin, it was the first of its kind that was being brought under the ADA. It involved agreat man who I have kept in touch with named Don Perkel and he had worked at this pizza chain called Chuck E. Cheese. It's a pizza parlor with a big mouth games ball pits and all sorts of things that kids love and otherwise great place to go. And Don Perkel who is non-verbal and also has intellectual disability, at the time it was referred to as mental retardation, was hired by Chuck E. Cheese. He was doing a great job he was preparing pizzas and he was working in some janitorial modes in the staff loved him. Unfortunately, sometimes corporations we see under the ADA they get it wrong. It doesn't necessarily mean they're totally bad actors. But, a senior representative from the company came up to this little college town, Madison Wisconsin, saw Don Perkel working at the Chuck E. Cheese and said fire that guy basically I don't like the way he looks. There was nothing of course it all wrong with Don or is work ethic or his work those attitudes were exactly the kind of attitudes that the ADA was meant to deal with. to their great credit, a sign of humanity that keeps us going once in a while, the local staff at the Chuck E. Cheese said if you fire Don we're all going to quit in protest. Unfortunately, they proceeded to fire Don. They all quit in protest, and there was a trial under the Americans With Disabilities Act, one of the first of its kind involving a person with intellectual disability and Don's right to work.
After a multi-day trial, I had testified as an expert based on my research about the importance of work, and accommodations, and qualifications of individuals with disabilities, the jury found for Don $80,000.00 in back pay and other damages. It was a great victory, the first of its kind. And as everybody was kind of packing up, the jury foreperson asked the judge a question, and that was “so that this never happens again in our town can we award Don an additional 13 million dollars in punitive damages to send a message that this is wrong.” The judge upheld it, there are caps on damages under the ADA. But I believe today it's still among the largest judgments of its kind. Interestingly, as a lawyer myself, lawyers are paid to be creative, sometimes good sometimes less good. The lawyers for the defense filed the motions. They got a psychiatrist saying that there's no way that Don, a person with an intellectual disability, could enjoy the fruits of 13 million dollars. And the motion from the side that I was working with came back and said basically that Don would enjoy every penny of that 13 million dollars. And the judgement was upheld.
That was my introduction to this really evolving and new area and the building of an institute to study the ADA in action at the University of Iowa. It was called the Law, Health, Policy and Disability Center.
Loving Iowa City, and raising four kids there. Kind of minding my own business and doing research. Syracuse University came a knocking. Syracuse University has a long really exemplary tradition in the area of disability and disability rights, perhaps among one of the best in the country. Of course, I was aware of Syracuse University, and they had a new chancellor at the time. A woman named Nancy Cantor; who went on to other presidencies, had been the president of the University of Illinois, very accomplished visionary. And she began recruiting me to build a similar Institute at Syracuse University. Now Nancy Cantor, like many of us, her life was in many ways defined not by her prominence in the field and being a president of a university and really a global scholar, but by her relationship with her son Archie who has autism. And she understood what it meant to infuse disability in concepts of inclusion and integration, into all aspects of daily life. They graciously, as the saying goes, made me an offer I couldn't refuse. And it turned out that at Syracuse University a beloved Dean who had passed away unfortunately quite young, Dean of the School of Education, was named Burton Blatt. And Burton Blatt, in the 1970’s, with his colleague Mr. Kaplan, basically got into the old institutions the Willowbrook, Penhurst, remember the old institutionalization movement? But he got into those institutions before it hit the press and they had a hidden camera on their belt and they did this photographic expose called “Christmas in Purgatory.” It was really a portrait of the hellish life of individuals living in those institutions. And that really lit the fires of reform and was one of the earliest efforts to focus on the horrific conditions facing people with disabilities in the 1970’s
Fast forward to Nancy Cantor and myself. The family of Burton Blatt, very gracious prominent family, decided that in addition to me coming to Syracuse they'd like to honor his memory by endowing this new institute called the Burton Blatt Institute. They wanted it to be as it is a cross disciplinary, across the life course, and work with economists, lawyers, physicians, political scientists, and so forth. And so we established at Syracuse University as a university institute, which meant in reporting to the chancellor. we tried to work with all the colleges around the campus to focus basically on the social and financial inclusion of people with disabilities broadly speaking in America this was before the UN Convention on the Rights of Persons with Disabilities. As a result of that we have been very blessed to grow quite significantly with scores of staff in Syracuse, in New York City, now in Atlanta, Lexington Kentucky, Washington D.C., soon to be in California. And we are a niche, credible think tank that does leading edge research and outreach in the area that is driven by people with disabilities and people who have experience in their families or elsewhere with disabilities to try to make a little dent universe.
That's my long introduction Mike, I hope not too long as your simple question about Burton Blatt.
MIKE GALIFIANAKIS: No, I thank you so much. It's such a great perspective and such a great overview and really appreciate. It is about individuals making a difference along the way. You mentioned that Burton Blatt Institute is a cross disciplines entity. Can you give the audience a sample of some of the current programs or initiatives that the institute is involved with?
PETER BLANK: We take our que by leading edge issues, we hope, in the disability and broadly general quality civil rights area. To give you an example, years ago after the ADA was passed, probably the late 1990’s, the Internet was just coming alive in a real sense way before e-commerce and social media and Facebook and all that. Because of my writings on inclusion and accessibility, I was very fortunate to be co-counsel with some amazing lawyers who were leading at disability rights advocate, disability rights advocates is a leading disability rights law firm based out of Oakland, we were representing the National Federation of the Blind against Target Stores. You know Target of course. And at the time Target's website was basically not accessible to people who were blind. There were alt tags that didn't have text and there were different navigational techniques. Litigation ensued unfortunately. Today, I believe that Target, like many corporations, probably are exemplar in this regard. But at that time, it was a very new thing. As a result of that litigation in California, we created some of the first really good law that under certain circumstances the Americans With Disabilities Act is broad enough to cover people who are blind so that they have websites accessibility. Which at the time was not such a simple question.
MIKE GALIFIANAKIS: I think that's an interesting aspect of law and policy that the ADA was enacted in 1990. And you said parallel to that in the ninety's the World Wide Web was being developed. But it seems like in the early ninety's the ADA was not able to specifically address how you make Web sites accessible. How do you ensure technology applications are going to be accessible to people with disabilities? So could you talk a little bit about how law seems to almost have to play catch up some time with what's going on?
PETER BLANK: Sometimes technology leads. Sometimes civil rights leads. So to complete that story, as a result of that litigation, remember the ADA doesn't talk about specific website accessibility as you say it talks about full and equal access. How that's defined, of course, can be the big question. But as a result of that litigation, and the work we did in that area the Burton Blatt Institute and the Iowa Institute were fortunate to receive large grants. For example, one called ITworks. It is about how we make, and what sort of strategies can be used to make the workplace accessible for people with disabilities. We're still playing that out a little bit today. The ADA gets a little bit of a bad rap, in my view, because there are some litigators out there, and every profession has people who kind of push it to the limits, litigators who are doing scores and scores of litigation almost all mass against banks and corporations and others because their websites are not accessible. Now don't get me wrong if you've had 30 years to follow the law and you haven't done it that's a big problem. But the problem is that the business community has a backlash to that which ends up in legislatures or Congress and all the sudden there are calls for new laws about limiting the scope of the ADA. The bigger issue is that much of the institute work thrives from real world issues.
And if I may I can give you another example. We think is 7 or 8 years ago, I got a call from an amazing lawyer named Jonathan Martinis, who had a case in a little court room in Hampton Roads Virginia representing a woman named Jenny Hatch. Jenny is a woman with Down Syndrome, intellectual disability, she's an amazing woman. Independent of that, she had her own job, she was working in the community, she lived where she wanted with friends. Unfortunately, due to a variety of circumstances, and this is not parents versus children and so forth. Jenny was about 29 at the time, so she was an adult woman. Her parents decided that they would want her to be under their complete guardianship. That would mean for Jenny that she wouldn't get to choose where she lived. She wouldn't get to have an iPhone and text with her friends. She wouldn't get to volunteer and work where she wants. And basically, took away control from her for her life in those areas which she had shown that she can do just fine. So out of that little court room I went down there and testified about the importance of self-determination and independence and the principles of the Americans With Disabilities Act. And for the first time in American history, kind of like Chuckie Cheese, a court ruled that an individual like Jenny should have the right, or at least the chance to be self-determined and instead of guardianship she should be allowed this emerging concept called Supported Decision-Making. Which is essentially something we do every day all of us. If I take my car into the auto mechanic, I rely on that mechanic or banker or anybody else to help me make those sorts of decisions. The idea is that 99 percent of the cases, guardianship historically has been overly restrictive. We know this is an empirical matter. And there's a lot of room for people to have more say in their life. We won that case. It got a lot of press. Jenny was in People magazine in the Washington Post so forth and all the advocacy groups were very supportive of it. What happened then, and this comes back to why I hope the institute can play a role in helping shape policy and research and so forth, we were funded by the Department of Health and Human Services and other organizations at the federal level, to examine what this concept of Supporting Decision-Making was, with our terrific partners in Washington D.C., one is called Quality Trust - taking the lead on this. We established a national resource center for parents and individuals and organizations to better understand why the principles in the ADA of self-determination were so important today. We are looking at those principles both in other countries, with other types of disability, for example mental health disability, youth in transition. I go on a bit too long, but I want to illustrate to you our passion for trying to take the leading edge issues, and there are 3 or 4 other issues I can tell you about I'm not sure we'll have time, financial literacy in other areas in which we've tried to do the same thing.
MIKE GALIFIANAKIS: I would love to learn more about Supported Decision-Making is probably an evolving concept and it's probably individualized based on a particular individual and what his or her needs are but is that a legal concept now or is that still developing.
PETER BLANK: This is very good question. It's evolving.
MIKE GALIFIANAKIS: Okay
PETER BLANK: In the United. States historically, the states each of the 50 states, were responsible for having laws about guardianship. And those laws typically ended up resulting in people having plenary guardianship. In other words, once you were under guardianship whether you were an older adult or an individual with a cognitive disability, all of people's decisions were made by others. This new concept of Supported Decision-Making was kind of up partial approach - we do it all the time for example with advanced directives, with powers of attorney right, it's just a different paradigm or way of thinking that has now been recognized in law and in state statute. As an alternative to guardianship. For example, I don't know Georgia, but Virginia, Delaware and a few other states have changed their guardianship laws so that the first priority to try to allow the individual to make their own decisions before you take away their power to make their decision.
MIKE GALIFIANAKIS: Right that's part of that evolving focus on what's best for the individual how to assert that person's independent living rights.
PETER BLANK: Exactly, and we hope that what we do here at the Burton Blatt Institute is helpful in policy change, in law change, and in systems change. And of course, useful when people try to vindicate their rights and legal setting as well. And that's probably been one of the most satisfying things about what we try to do is a team. And this goes way back to our early work on deinstitutionalization when my colleagues and I for example did a very large study tracking thousands of people as they moved from institutional settings to community-based living settings after the Americans With Disabilities Act was passed.
MIKE GALIFIANAKIS: If you're just joining us, you're listening to Capitol View and Professor Peter Blanck, University professor at Syracuse University who is discussing Disability Law and Policy. Professor Blank you just mentioned a few minutes ago that among all the many things that you are working on and studying matters of economic literacy and self-sufficiency for people with disabilities.
PETER BLANK: Yes very important area of course, the great economic divide that we're facing as a country today.
MIKE GALIFIANAKIS: Can you share some of your work in that area?
PETER BLANK: I'd be delighted to. It’s a very good question Mike. I have really the privilege of working with an amazing team in Washington D.C. and elsewhere. One of our leaders on our research team is a guy named Michael Morris. Michael Morris has been in Washington D.C. in our Washington office for many, many years. He has focused a large part of his career on financial empowerment for persons with disabilities. Most people with disability, as you know Mike, live in poverty and don't have a great career trajectory and great ways for saving money and becoming economically independent. So Michael was instrumental, as of course were many others, in helping to pass President Obama signed into law in 2014 The ABLE Act, Achieving a Better Life Experience. Which could be among the most important laws passed for people with disabilities since the ADA. In a nutshell, and I should say on our website all of our materials are free. We have articles available you can download them on all the topics. I'm talking about at bbi.syr.edu.
MIKE GALIFIANAKIS: Okay
PETER BLANK: Why is The ABLE Act important? Basically what it is the states will set up savings account for individuals with disabilities who qualify and they can save up to $100,000.00 tax free. You can put money into these account, or your friends or family, and there's no taxes charged. And you can use all those funds for anything related to your disability broadly defined. That's really good. In addition to that, the person with the disability is the owner of the account. The person in power. Nobody else owns it. The next most important thing of this trifecta is that historically many people with disabilities have been persuaded from working or from saving money for fear of this so-called income cliff. That is if you have certain amount of money in your bank account or earnings, you lose your government health insurance benefits typically through Medicaid or SSI.
MIKE GALIFIANAKIS: That's a pervasive problem
PETER BLANK: The brilliance in my mind of The ABLE Act is that this money that you're saving tax free does not count against your income assessment for purposes of your governmental benefit. In other words because you're doing a good job of saving, you're not going to be penalized and lose your government benefits. The idea being that this is a terrific incentive to pull people out of poverty to provide them a venue for savings and still keep the safety net of Social Security. So that's why I said I'd be interested in your reaction Mike. It's an extremely important law we worked on that and as a result Burton Blatt Institute with its partner the National Disability Institute received some of the first grants to study The ABLE Act in action. Randomized control trials which is a fancy scientific medical term trying to understand causality. Basically we're going to have people assigned to different types of account and see how their quality of life is their savings their employment and so forth. I just finished that story, by again trying to convey to you how we have taken what we hope are leading edge issues really effecting people with disabilities and turn that into a research program that furthers the effort.
MIKE GALIFIANAKIS: I think you answered part of my next question with regard to The ABLE Act. in the data that you can be acquired to make a determination of how successful it was. But whether we're talking about financial empowerment Supported Decision-Making or any of these other critically important areas that Burton Blatt Institute is working on, what are the critical factors that you believe are necessary for successful advocacy on the systems change level? If you can share critical factors for successful advocacy on an individual level as well.
PETER BLANK: On the systems level, increasingly today as we know content is king. Good data and good information that is credible in an era in which we often hear unfortunately from many people in prominent positions that nothing in the news can be trusted. Nothing in science can be trusted. My hope is that this is a period which we will eventually transcend and we'll moderate but at the systems level the legislators and the judges and the attorneys in a small way like I have tried to do my work need hard good information. That's how you can make policy change. The National Resource Center for Supported Decision-Making provides help for people, provide resources, provide 24-hour technical assistance on these issues. At the individual level, it's a little more complicated because individual litigation, as you know or your listeners know if they've ever been involved in it, is so much emotion involved. There is so much unique circumstance ,that is so much dug in heels. And I would say that awareness of individual rights perhaps is one benefit of what we're trying to do. The people who go to trial under the ADA and with the Equal Employment Opportunity Commission we have to believe are such a small tip of the top of the iceberg of people who rightly so choose not to go back to work may choose not to go to that restaurant again, may choose to stay on governmental benefits and this is a terrific loss both economically socially and culturally, to our country. One of my best friends, who uses a wheelchair, will always say to me if I can't get into this restaurant - this restaurant is not just losing my meal ticket they're losing the 5 friends and family members that I'm bringing with me. And it's so true in so many areas. And I do believe that there are many good corporate and individual actors out there that get it. And I do believe also that many of the fears companies will go out of business, that people with disabilities are not as qualified whatever you hear, they just haven't proven true in empirical fact and those are the sorts of studies we like to do.
MIKE GALIFIANAKIS: In the few minutes we have left, I had a couple other specific questions. One going back to the Institute being at Syracuse University and Syracuse being so supportive of disability studies generally. Can you give the audience a sense of the type courses or programs that the university offers on disability related matters or studies?
PETER BLANK: Syracuse University, to my knowledge, was the first disability studies program in the United States. It has the first disability cultural center in the United States. and there's a whole array of courses relating from economics, to health ,social work that look at those traditional concept, not just from a disability perspective what's of course called from an intersectional perspective that is from the experience of race, gender, age we all know that the experience of one individual from a certain cultural uses a wheelchair can be very different from a similar individual in a different culture or race or age. It is a very cross-disciplinary listing of courses that look at a whole range of things from portrayal of individuals with disabilities in film and the media. To the economics of health and environment affecting people with disabilities. And it's been a very successful program. Now of course there are many fine universities that have disabilities studies programs. My one surprise, if I may, is that the top top universities in the country for some reason don't seem to have gotten on the interest wagon in the area of disability studies. I don't know the reason for that. But I think there's a lot of room for many fine universities certainly there are many fine universities in the Atlanta area that we work with that are engaged in this topic. Including I would say, by the way some of our great partners, that historically black colleges were delighted to work with in the Atlanta area such as Morehouse College.
MIKE GALIFIANAKIS: I'm glad to hear that universities in Atlanta are participating as well. The last question I had. Going back to our discussion accessible websites and the work you've done there. Can you give us an outline or overview of what you think best practices are for developing accessible information and communication technology for individuals who are blind or have visual or print related impairments ?
PETER BLANK: Well we're in such an exciting edge where we're beginning to see not just the concept of accessibility that is often individually tailored, but a move towards more universally designed strategies. That is one size fits all and as my colleagues say one size fits one. For example, a colleague of mine named Greg Gregg Vanderheiden, central to an international organization called Raising The Floor. I happen to be president of the US chapter of Raising The Floor. One of the main products of Raising The Floor, it's a nonprofit it's been funded millions and millions of dollars by the United States and other government, is to create tools and systems in the cloud not on a particular device, so that you could pick up any device anywhere - your handheld your laptop phone whatever and it auto personalized to your preferences which have been preprogrammed in the cloud (big font, big contrast whatever) and I think increasingly will see this personalization of devices which will do away with some of the early battles we had. Why? It will number one make sense for everybody. For example, of this situational disability employees or noise or lights or whatever right. And number two, it’ll bring more and more users into the fold. Many people before me have said dollars are as green as anybody else's. That's a billion people in the world, arguably who report disability. And that economic force will not be overlooked as a result of that. So the move will be towards universal design and then of course linking that to our home market, our workplace sensors. And the book that I wrote in this area is called equality and it's about some of the legal issues we have to think about as we move in this direction. For example, privacy, security, individualized approaches and so forth, to make sure that this really benefits the most people possible. It’s a lot of work to do.
MIKE GALIFIANAKIS: Professor Blanck, thank you so much for the in part of our program and really appreciate all the work that you do with that Burton Blatt Institute.
PETER BLANK: Thank you Mike it really has been a great honor to work with you and to know you and the great work you have done in Atlnata as well and I hope we'll speak again in the future.
MIKE GALIFIANAKIS: We will and we look forward to it you've been listening to Capitol View, an original program of the Georgia Radio Reading Service Corps. This is Mike. Thank you for listening to gGARRS.
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