For over 40 years, Arlene Kanter’s been leveraging laws to combat institutionalization of persons with disabilities. She founded the Disability Law and Policy Program (DLPP) at Syracuse University, one of the largest, most prestigious disability law programs in the world, and participated in the negotiations of the UN Convention on the Rights of Persons with Disabilities (CRPD). Having “been in the room where it happened” and penned several publications on the CRPD, she has some strong opinions on the treaty—and disability rights generally—which she shared with ABILITY Magazine.
Itto Outini: How did your career in disability advocacy and law begin?
Arlene Kanter: Throughout my life, I’ve had neighbors, friends, and family members with disabilities, and I’ve always seen myself as an ally. I witnessed firsthand how children with disabilities weren’t just treated differently, but actively bullied as well. I tutored students with disabilities in high school, and it really bothered me to see how they were cordoned off from the rest of the class and taught in separate rooms. At that time, not many students with disabilities attended public schools. Many were sent away to institutions.
During high school, I volunteered at a summer camp, one of the oldest residential programs for children with developmental disabilities in the US. I remember coming home every night and feeling upset because I was having dinner with my family, but the kids I’d been playing with all day didn’t get to go home. They had to live there, away from their families.
I took those memories with me to law school, but at the time, there was no such field as disability law. There were no courses, no lawyers specializing in the field–not even any textbooks!
The only established field with any relevance at all was “mental health law.” For instance, the insanity defense had been well developed, and a body of law existed for criminal cases involving competency to stand trial, but that’s about all. Even the disability rights movement was only just getting started.
Around the time I finished my JD, I learned about two legal organizations that focused on disability rights. One was in California and focused mostly on physical disabilities, and the other was in Washington, DC and focused mainly on the rights of people with mental disabilities, particularly their right to leave institutions and live in the community.
Itto: Was that around the time of Judy Heumann? Was she involved with either of those organizations?
Arlene: The organization in California was the Disability Rights Education and Defense Fund (DREDF), and yes, Judy Heumann worked with them, as part of the independent living movement. That’s where the disability rights self-advocacy movement in the US began, with Judy and others at the helm. If you haven’t seen the film Crip Camp, please watch it. It tells an important but not well-known story about the movement’s history.
Itto: And the one in DC?
Arlene: When I worked there, it was called the Mental Health Law Project (MHLP). Now it’s the Bazelon Center on Mental Health Law. It began when a group of lawyers who’d worked on prisoners’ rights cases got funding from the federal legal services program. They started applying the legal theories developed in prisoners’ rights cases to cases involving people with disabilities who were involuntarily detained in institutions. We brought the first of those cases, Cleburne v. Cleburne Living Center, to the Supreme Court in 1985, arguing that people with disabilities should be protected under the equal protection clause of the Constitution, just like racial minorities. The court disagreed.
As soon as I graduated from NYU, I applied for a job at MHLP, but they were a not-for-profit organization and didn’t have the money to hire me. I went and got a fellowship from Georgetown to pursue my LL.M instead. That’s where I brought my first case to the US Supreme Court. The case involved homeless people’s right to demonstrate by sleeping in a public park.
When that fellowship ended, I went back to MHLP and asked them to hire me again. I told them, “I’ll work as a waitress and volunteer on nights and weekends if I have to–please, just hire me!” And they did! That’s where I got most of my hands-on legal training, working with the most amazing lawyers and board members. Many of the people on the board were labeled “mentally ill” and were constantly dealing with prejudice and stigma. I learned so much from working with them.
Itto: Like what? Can you give some examples? What did you learn from them that couldn’t be found in textbooks?
Arlene: For example, one of the leaders of the self-advocacy movement at that time, Howie the Harp—he’s since passed away, sadly–coined the acronym TAB (Temporarily Able-Bodied). The point was to underscore that, although some people have disabilities right now, the rest of us are only temporarily able-bodied. Anyone can become disabled at any time. Almost all of us will experience some form of disability sooner or later. Disability’s a natural part of human diversity and should be treated as such.
That insight deepened my perspective at the time, and it took on new relevance for me years later, when I went through treatment for cancer. I got to experience firsthand how people are treated when they have disabilities. Many people weren’t sure what to do, so they defaulted to pitying me. I didn’t like that at all.
Itto: How did you go from working on domestic disability advocacy to international disability law?
Arlene: That transition started in 1993, when I got invited to teach the first course on disability law at Hebrew University in Israel. In that class, there were students from all over the world: Jews, Muslims, and Christians from Israel, Palestine, the US, the former Soviet Union, even China. They really opened my eyes! They’d all learned about international law in law school. In the US, no such courses are required.
As soon as I returned to Syracuse, I immersed myself in the field. I realized that focusing only on domestic disability law was far too limiting for me and my students. When we study different countries’ legal systems, we get introduced to new ideas that we can use to improve our own.
As it happened, that was also around the time that the ADA was coming into effect. It’s an important law and has become a model for many other countries, but it’s not the only one out there, or even necessarily the best one. International human rights law provides a much broader perspective.
Itto: Can you share some concrete examples? What have you learned from other countries’ legal systems?
Arlene: I’ll give an example from Israel, where I’ve spent a bit of time. After teaching there, I went back in 2010 on a Fulbright scholarship and came to admire many aspects of their disability laws, including how they regulate accessibility and infrastructure. In the US, buildings have to be accessible if they were built after the effective date of the ADA. But even if a building was built earlier and isn’t accessible, it can still be legally occupied and used. The owners are only required to make it accessible if a person with a disability sues under the ADA and wins. That takes money and time.
In Israel, on the other hand, buildings have to be inspected and receive a certificate of accessibility before they can open. There’s even a program that trains people to become accessibility experts. These experts must certify that a building is fully compliant with the relevant accessibility regulations before it can be occupied. If the building meets the requirements, it will open. If not, it won’t. Personally, I think that makes a lot more sense than requiring someone to bring a lawsuit, especially after the building’s already been open for years.
Another example comes from my work in Vietnam. Some countries decided to ratify the CRPD and then amend their domestic laws to comply, but in Vietnam, they did it the other way around: they revised their domestic laws first and then ratified the CRPD. I was among several experts from the US who were invited to help write their domestic disability law.
Unlike the US, Vietnam doesn’t have a history of institutionalization. I should state up front that institutionalization is something I oppose on principle.
Itto: Why is that?
Arlene: There’s a tremendous body of research at this point revealing that they’re breeding grounds for abuse and exploitation, especially for women and children. Even clean, well-staffed institutions deprive people of autonomy and can do them real harm. One organization I’ve worked with for decades, Disability Rights International (DRI), has done a great deal to bring attention to these issues. They’ve exposed a lot of horrifying things. In Kenya, for example, during our last visit in 2019, we witnessed children with disabilities living in the most horrific conditions in orphanages after their parents were convinced that they weren’t capable of caring for them in their homes. These orphanages often get funding from well-meaning groups from the West, whose donors likely have no idea what kinds of practices they’re funding.
Thankfully, many wealthier countries, such as the US, have been on a trajectory toward de-institutionalization in recent years. COVID’s shown why this needs to happen like never before: people with disabilities who live in institutions and nursing homes have been dying at three times the rate of non-disabled people.
Itto: But you said that Vietnam doesn’t have a history of institutionalization. What have they done instead?
Arlene: In Vietnam, as in many other countries, families have always been expected to support each other. During my meetings with Vietnamese colleagues, I learned that children with disabilities couldn’t legally be registered as citizens at birth because of the stigma. What did the parents of those children do, you might ask, when they returned home after giving birth? Usually, they would hide their children out of shame.
At the same time, we learned that the Vietnamese government runs an extensive support system for seniors. It’s actually illegal for a child to refuse to take care of their parents. The government provides them with services and resources so they can take better care of their elders. That program’s completely accepted by just about everyone. So, we thought, “What if we use that same framework to support the families of persons with disabilities?” It’s not perfect–people are still get stigmatized, mistreated and abandoned in Vietnam because of their disabilities–but it’s made a big difference, providing financial support to families.
Itto: Is there a comparable program here in the US?
Arlene: Not at all. The government doesn’t help families take care of their children with disabilities. There’s no federal fund to help them make their homes accessible, purchase specialized equipment, or access necessary services. We don’t even guarantee any kind of paid leave for family members of persons with disabilities! Nor does the ADA provide any accommodations to the family members of persons with disabilities. We just expect everyone to fend for themselves.
Working in countries like Israel and Vietnam introduced me to other ways to approach problems confronting people with disabilities and their families, besides what’s offered under current US law.
Itto: What would you like the US to do differently?
Arlene: We could start by ratifying the CRPD! The fact that we haven’t makes me furious. Absolutely furious.
Itto: Why is ratifying the CRPD so important? I mean, why not just pass new domestic laws?
Arlene: For one thing, it’s embarrassing that we haven’t ratified the CRPD. I go to other countries and help them rewrite their laws to conform to the CRPD, and that’s more than my country has done! I mean, who do we think we are? 183 countries and the European Union have ratified the CRPD! It’s embarrassing.
On top of that, the CRPD establishes some basic human rights that we don’t recognize here, like the right to live in the community, with supports if needed; the right to an adequate standard of living, housing, education, medical care and supported decision-making; and the right to physical and mental integrity. No international law had ever recognized those rights before the CRPD. They’re not enshrined in our federal laws, either.
Itto: Do you think there’s any possibility that the US might still ratify the CRPD?
Arlene: I certainly hope so. But these days, with such a divided Congress, I’m not optimistic. President George W. Bush said, right out of the gate, that his administration wouldn’t sign or ratify the treaty, even while his people were participating in negotiations at the UN! President Obama signed the CRPD during his first term, publicly recognizing that it would extend ADA protections to Americans living and working abroad, but the Senate refused to ratify, not once but twice. Senate Republicans blocked the law and, during debates, totally misrepresented what it says and what it stands for.
Itto: Where do you think the reluctance to ratify the CRPD comes from?
Arlene: Frankly, it’s hard to understand, especially considering that the CRPD’s modeled after the ADA. There are certain profound differences, of course, not just in terms of specific articles, but at a much deeper level, so I think that’s probably why. The CRPD rests presumes a very different role for the federal government in protecting fundamental rights and freedoms, and I think that some people feel that ratifying it might threaten the philosophical basis of our legal system.
Itto: How so? Can you elaborate?
Arlene: US civil rights laws, including the ADA, are written to focus on the the rights of the individual. They’re based on the view that if you work hard, you’ll succeed, regardless of systemic barriers like ableism.
As a consequence, under the ADA, whenever someone needs accommodation, they have to reinvent the wheel. For example, in order for somebody with a disability to get a workplace accommodation, they first have to prove that they’re disabled using medical diagnoses as the criteria. Then the employer has to decide if their request is “reasonable,” which basically means, “Will it cost too much?” Then, even if the employer agrees to provide the accommodation, it’s only for that one employee! If another employee with the same disability needs that same accommodation, they have to go through the process all over again. The most charitable thing I can say about the system is that it’s inefficient.
In the same vein, for the ADA to be enforced, individuals have to sue. To do that, you need a lawyer, you need money, and you need the stamina and will to spend your time fighting a legal battle that might take years and years, when maybe all you wanted to do in the first place was go shopping or have a meal at a local restaurant!
There’s also the issue of guardianship. The CRPD enables something called supported decision-making, whereas we’ve got guardianship laws in every state. With supported decision-making, people with disabilities are empowered to choose who’s going to support them, how and to what degree. Meanwhile, we appoint guardians to make decisions on their behalf. In other words, under the ADA, we systematically deny many people with disabilities the right to make decisions about their lives. That’s what’s at stake in the recent case involving the famous pop star Brittany Spears, so for anyone who’s been following it, these issues might sound familiar.
Itto: What about education? How would the CRPD affect educational opportunities for Americans with disabilities?
Arlene: That’s a good question. The CRPD recognizes the right of all children and adults to inclusive education. In the US, there’s not even a constitutional right to education, much less to inclusive education, where children with and without disabilities are taught in the same classroom. The Individuals with Disabilities with Education Act requires only a “free appropriate education,” not an inclusive one.
In higher education, too, students have to prove their eligibility for accommodations based on a doctor’s evaluation. That can get expensive pretty quickly, and even after making those requests, many students don’t receive the accommodations they need. And if they do, they’re often ridiculed by classmates and faculty.
Why not do it differently? Why not create a classroom according to universal design? In such a classroom, everybody would be able to see and hear from anywhere in the room. Course materials would be made accessible to everyone from the outset. Students who need individualized accommodations, such as extra time on exams, would still get them, but that would make a lot of those piecemeal accommodations unnecessary. In the long run, it would be less cumbersome for everyone.
As far as I’m concerned, the issue boils down to a simple question: “How can we best teach our students?” I think about this question all the time. Personally, I try to ensure that every student gets a chance to excel. As far as I’m concerned, my job is to support them and enable them to do their best, not to put stumbling blocks in their way. I’m thinking of a quote–I’m sorry, I don’t recall the author–but it goes like this: “If a child can’t learn the way we teach, maybe we should teach the way they learn.”
Itto: Speaking of teaching, can you tell us a bit about the Disability Law and Policy Program at Syracuse?
Arlene: Of course! The program just celebrated its 15th year last year, as the ADA celebrated its 30th. We’ve collaborated with International Programs to launch the first international law program where lawyers from countries around the world can come together and study international and comparative disability law. With funding from the Open Society Foundation and others, we’ve attracted highly qualified lawyers committed to human rights and disability law to our LL.M class each year, as well as our new S.J.D. program this year.
Every single year, I’m humbled anew by the challenges these international students face in completing their LL.M. or S.J.D. studies away from home, in a second or third or fourth language, and often with disabilities. Many of our international students who’re blind have told me how much more accessible Syracuse Law is than the schools in their home countries. They’re often impressed by how many more books, articles and resource are available to them in alternate formats. It’s deeply gratifying to me that we’ve been able to build that infrastructure into the program.
Itto: What big projects are you and your colleagues at Syracuse currently working on?
Arlene: Right now, the City of Syracuse is preparing to host up to 200 Afghan refugees. Maybe more. Lawyers in our community are gearing up to help these refugees in a variety of ways. One of my current students, a Fulbright scholar from Afghanistan, will be collaborating with me to develop training materials about conditions in Afghanistan for people with disabilities. These materials will be used by local lawyers to better represent Afghani refugees in their claims for asylum.
Itto: Is that a new initiative? Or is it building on work that you’ve done in the past?
Arlene: It’s a new initiative, but I’ve been interested in the intersection of immigration and disability law for years. The field is full of fascinating and infuriating contradictions. For instance, historically, the US has explicitly excluded immigrants with disabilities. We have laws that say, for example, that if a person who’s seeking to enter the US would be dependent on government assistance, they can be denied entry. However, if a person’s facing persecution in their home country, that exclusion doesn’t get applied–or at least it shouldn’t, in theory. Those individuals are eligible to apply for asylum, or to not be removed from the US.
In 1999, along with some other lawyers, I brought a case on behalf of a man from Mexico who sought asylum on the grounds of disability-related persecution. That case was the first of its kind. The Board of Immigration set a precedent by holding that people with disabilities may constitute a “particular social group,” which is one of the requirements for claiming asylum. Since then, people from many different countries have sought asylum in the US due to disability-related persecution. And yet, those cases are still very difficult to win.
Itto: Why is that?
Arlene: It can depend on a number of factors. The case often turns on whether the conditions in the country of origin meet the formal criteria for persecution. In some countries, people with disabilities are systematically confined to institutions, where the death rate is very high due to poor conditions, and in those cases, asylum may be granted. In most cases, though, persecution on the basis of membership in the “particular social group” of people with disabilities is difficult to prove.
Itto: This seems to be a very fraught moment in global history, with international conflicts, natural disasters, wars–events that leave lots of people with disabilities and also drive migration. Can you help us put this moment in perspective? What changes have you witnessed in the last 50 years in terms of disability rights and international law? What, if anything, gives you hope?
Arlene: When I graduated law school in 1981, there were only two organizations in the entire country that provided legal services to people with disabilities. Now, there are hundreds in the US alone! There’s an international treaty that recognizes the rights of people with disabilities, even if we haven’t ratified it. Children with disabilities are now going to school and becoming lawyers themselves. Actors with disabilities have been nominated for Academy Awards. That’s progress!
Yes, discrimination and ableism are still with us, but things have improved, and I think they’re still improving. Internationally, the CRPD’s promoting changes in countries around the world. People with disabilities are demanding and getting more seats at the table. It’s not mission accomplished, but those are very consequential things.
Itto: One last question: what are you most proud of having accomplished?
Arlene: It’s not what I’ve accomplished. When I see my students, including those with disabilities, graduating from law school, landing great jobs, and keeping the pressure on societies and institutions around the world to protect and expand rights and access for people with disabilities, that’s what makes me most proud.