The New UN Disability Rights Convention: Building Support in the United States for Ratification and Implementation

Implementation through Domestic Law, Policy & Practice

Captioner: Natalie C. Ennis, CSR-CA, RPR / CI and CT

ERIC ROSENTHAL: Okay. We will be starting in just a few minutes. We've heard that the sound in parts of the room is not good. We're just encouraging people to move up to the front and towards this side if there's any trouble hearing so that we can do it a little informally. But really, feel free. Please come to the front or this part of the room if you can not hear. It should be much clearer.

Well, I think there's still a few people getting coffee. As soon as they sit down, we'll begin. There are a few seats here in the front that are open.

Okay. We're going to start. I should say continue. I think we can still say good morning because we're still in the morning. My name is Robert Dinerstein. Before I introduce our panel, what I did want to say, since this panel is about implementation through domestic law, policy, and practice, as we heard this morning and will continue to hear, one of the challenges I think for the people here today and ultimately the challenges going forward will be to try to have the Convention become meaningful within U.S. law, U.S. courts, and policy making entities, legislatures, et cetera. It's perhaps interesting to note that over 35 years ago, judge frank Johnson in the landmark case in a footnote referred to international human rights as a support for people with disabilities. He noted, it's interesting to note with regard to the people with mental retardation is supported by a resolution adopted in 1971 by the general assembly of the United Nations. That resolution reads in pertinent part, quote, the mentally retarded person has a right to proper medical care and physical therapy and to such education, training, rehabilitation, and guidance as will enable him to develop his ability and maximum potential, unquote. I cite that both because there is a long history at least of rhetorical reference to international protections. Yet, as you have heard from that quote, we have come a long way. Our terminology has come a long way, away from the medicalization and so forth, which is very much reflected in this Convention that we're talking about today.

In addition, as we heard this morning and as I want to emphasize from my own perspective, now that the Convention has been signed and is on its way towards being signed and ratified, it's only beginning in terms of the process of making this a reality. Many years ago, Michael wrote, now comes the hard part.

We have a very distinguished panel here today. I will introduce them briefly. Then I will let them - well, I won't let them. They will talk for about 15 minutes and then we will have questions from the audience because you are so knowledgeable and many of you have been so involved in this process that it would not be beneficial if we did not take advantage of your knowledge.

The full bios of these folks are in your materials. I will not read everything about what they are about. Arlene Kanter is from the Syracuse University Disability Law and Policy Program. She also directs the law school's Disability Law and Policy Program.

Next to her, we have Kathy Martinez, who has worked on foreign policy. She's famous because she's on a video called "My Country." It's a wonderful video. I show it every year to my students. If you get people, Kathy, that don't know who you are coming up to you and saying how important you've been to their lives, that's why.

After Kathy we'll be hearing from Tina Minkowitz, who is the cochairperson of the world network of users and survivors of psychiatry. She was one of the 12NGO members on the working group crucial in preparing the text of this Convention. She will be talking about some particular parts of this Convention that are critical, particularly issues of individual autonomy, choice, decision making, and supported decision making.

And then lastly but not leastly, we'll be hearing from Hadar Harris, on the far left of the panel. She's been walking around doing logistics, but she's also the director of the center for human rights and humanitarian law here. I think she will be bringing to us a perspective on how other human rights instruments in this country have been adapted for U.S. law to give us a perspective on how that might be done for the Disability Convention.

We'll begin.

ARLENE KANTER: Thank you very much to American University. We would love to have a conference like this up in Syracuse.

I would like to thank you all for the lifetime of work. I want to thank Erin from AU, who has been an amazing coordinator. I would also like to thank the students who have been involved at the Syracuse University journal of international law and commerce. I hope their up here somewhere. They began running with me to try to put together a special volume of the journal devoted to the U.N. Convention. We have a wonderful assortment of authors who contributed. Many more who we wish we had. But including Don McKay. There's information about it at the table.

I also want to welcome a friend from Egypt who is visiting, an architect by training but a disability rights advocate now.


ARLENE KANTER: My task, I think is to kind of give you an overview, what I hope will be an inspiration to follow I thought the incredible specific and thoughtful suggestions that Tara gave us. She has given us food for thought. If we follow her lead, we'll be there.

Let me start by saying, I just want to define what we're talking about. What is human rights law? How will it be helpful?

Human rights law can be seen as many different things. It can be seen as an inspiration, a goal, a strategy, but also a barrier. If we label certain things as human rights and then, by some governments, identify them as something that's not worthy of domestic legislation, that's a problem. Traditional human rights focused only on kind of protecting rights of noncitizens against other countries interfering with their rights. But human rights today is much broader. It's expanded. And it's challenged. It's challenged because its premised now not only on the notion that states have an obligation to protect noncitizens in their midst, but that states also have an obligation to protect the rights of its citizens. The world community has recognized this. I think the United Nations Convention is one of the most significant and certainly one of the most recent examples of how human rights now can become an obligation of protection by individual domestic countries.

My talk will have three parts. I will talk first about kind of what's in the Convention, what's not in the Convention, and then, what now. So in terms of what's in the Convention, you know. You have it in front of you. It's a hugely expansive and comprehensive convention. It does include many of the rights we now have under the ADA and other discrimination laws in the United States. It looks at issues of education, employment, accessibility. So we can point to the IDEA, the ADA Title I that prohibits discrimination in employment, and the title that prohibits discrimination in access to public services.

But it also goes beyond what our laws provide in a way that can be instructive to us as disability rights advocates here in the United States. It talks about a right to work, which is different that a right not to be discriminated against in employment. It talks about a right to healthcare. The first implication important for us here is that there's no exception for the people with the label of mental disability. Everybody has a right to informed consent, but an exception has been carved out for people who are mentally disabled, perceived not to be able to give their own informed consent. The Convention goes beyond this to recognize that all individuals have a right to make decisions about their healthcare. Also in terms of the healthcare provision, it recognizes that all individuals should have the same level of access to healthcare, regardless of whether they are individuals with disabilities or not. And as we know, currently, there have been courts that have been cutting back in the United States on access to health insurance, for example, for people with disabilities. And cases have generally been unsuccessful so that insurance companies have been permitted to differentiate and to discriminate against people based on their disability.

The Convention also goes beyond in some ways our traditional thinking about adequate standard of living. It says in the convention that all individuals are to have an adequate standard of living. It talks about legal capacity, which Tina will talk about in more detail, which presumes that all individuals have the right to make decisions over their lives, and when they may need assistance, that we perhaps should not then resort to a guardianship procedure where the state intervenes to decide who makes those decisions. Instead, the Convention recognizes that individuals may get to choose people who can help them through difficult times of decision making. This is very powerful and progressive identification of what it means to have legal capacity.

It recognizes family life, the right not to be discriminated against. If you want to adopt a child, for example. It prohibits exploitation. Access to justice is included. Personal mobility. And participation in cultural life. Notice in Title III of the ADA, individuals have the right not to be discriminated against in these areas, but here the focus is on participation. So in some ways, the Convention has improved upon our language within the ADA.

And I want to focus on two discrete examples that show us I think a model of how the Convention can also be used to expand our thinking under U.S. law.

First, the Convention is the first convention - and correct me if I'm wrong experts on international law, but my reading says it's the first convention ever adopted that marries and joins together the rights to economic and political - economic and social and cultural rights with civil and political rights. We know that we have a tradition in the international human rights arena of separating civil and political rights which are those rights that the government can bestow and economic and social and cultural rights which are seen as the next stage of rights. This Convention is explicit. It joins together all of these rights.

I think the Convention in my view shows that the dichotomy between the civil and political rights, economic, social, and cultural rights, has been misleading when it comes to the right of individuals to actually get up in the morning and go to work and school and live their lives day-to-day. It's been an artificial dichotomy that has not served us well.

I will also argue that substance is not only an economic right; it's a political right. Substance does require food and shelter be provided for individuals. Political rights do include government's intervention. Clearly the government can have a role in promoting policies to provide better access to healthcare, food, and shelter. For decades, we know that the human rights community in the past had ignored certain issues of people with disabilities, particularly abuses in institutions, where we know that human rights communities had been very outspoken about the right, for example, of political dissidents in institutions. It became known through time that the people who remain in those institutions after the political uprising had been resolved, were still living in these horrible conditions.

The human rights communities have been working internationally to recognize civil and political as well as economic rights of others outside of the United States, as well as those interested in focusing on the rights for people generally to recognize that people with disabilities have an important voice in the process.

What is not in the Convention I think is also quite telling. I'm going to focus on just two quick examples. What's not in the Convention is the limitation of the rights that courts in our country have now been recognizing. For example, in terms of community living, Article 19 if you want to follow along with me. I won't read it. Article 19 recognizes that individuals should have choices about where they choose to live. Well, we would assume that is a human rights. Article 9 also recognizes that there's no right for a treatment professional to decide whether a community placement is better than an institution, because that is currently the law in the United States. In 1999, the Supreme Court held in the Olmstead case that Title II of the ADA prohibits discrimination against people with disabilities who would have to choose to go to an institution to get treatment as opposed to the community. Justice Ginsburg said that is discrimination. People have a right to community living so long as a professional makes that judgment. In the Convention, there's no limitation requiring a professional to make that choice. It is in the Convention as a right.

We can take questions at the end as well. But the second example is that - and this is - and I welcome your comments on this - that the Convention does not include a definition of disability. Those of us who were involved for a lot longer than this, know that the discussion of the definition of disabilities should be included. Maybe I'm a cup half full type of person. I see this not necessarily as a negative but as an opportunity. Under United States law, we have a definition of disability that I would critique is not entirely a social model of disability. It still looks at whether the individual can live unless their major life activities are substantially limited. In that sense, that definition focuses on the limitations of an individual.

The Convention recognizes in Article 1 that people with disabilities can have long term impairments but in the end, it is the society and environment that disables them from realizing their full participation and opportunities. That definition, which is not a definition - it's considered in the purpose section, I think - gives us hope and certainly is being used now in some other countries that I've been in touch with to open up and expand definitions of disability to include groups that otherwise may not have been considered, particularly children in the education setting as well. So if a convention would have a specific definition of disability, which I had hoped it would at some point, but it doesn't, so - but if it had, different countries could have used it to exclude certain groups from within their protection. We are already doing that. We are excluding people based on some of the restricted court decisions. This may be blasphemous, but if anyone has read the Dutton decision, it cut back on the definition of disability. We know many people in the United States with disabilities are not protected by the ADA. So our hope is also, in this area, that other countries may give us guidance about how to remove some of the limitations the court has placed on our definitions of disability. It's clear a strategy that disability advocates in the United States are working on. I think the bridge between them, looking how to overturn some of these court decisions, involved with the international disability movement, have much to learn from one another.

That's kind of what's in the Convention and what's not in there.

What now? As I said, I think Tara's road map of what we have to do was perfect. We should just get behind her and follow her lead. The real effect of this Convention is the effect on organizing and empowering people with disabilities and their allies. The role of international law will be important for those of us who practice law and teach law as well. I don't know if you're aware, but Justice Ginsburg and Justice O'Connor had received some death threats after a speech made in October 2005 and again in February 2006. She gave a speech before the constitutional court in South Africa and expressed concerns about bills in the United States that would be considered that would prohibit federal courts from referring to international laws when interpreting the U.S. constitution. She received notice from her security people after she gave the speech that there were some threats to her, quote, that using foreign law is a huge threat to our republic and constitutional freedoms. In response to that threat, she gave another speech which said basically that the United States judicial system will be better and will be more empowered if we can look to others' experiences and, quote, learn from legal systems with values similar to our own. So with Justice Ginsburg perhaps at the lead, other courts will continue, and lawyers will encourage them, to begin to incorporate international law in the area of human rights, including this Convention, in moving forward the rights of people with disabilities in our country.

In addition to incorporating the principles of the Convention in U.S. law, I think there are other reasons why it is important to domestic policy. We've been a leader for so long. We can do better. National requirements regarding monitoring procedures are limited. If you know the ADA, Title III, we say there should be access. But in order to often gain access, which we're looking at comparing to Egypt now, to get access, we often have to sue. How do we get out of this box and learn from the human rights practices included in the Convention? We have much to teach the world, yes, but we also have much to learn.

I just want to end with a wonderful quote from a letter that you all got today that I hope we will copy and send. These human rights violations must be brought to an end. By signing the Convention, the United States will demonstrate its commitment to the demonstration and recognition of the rights of people with disabilities and join with nations who support the Convention, putting others on notice that they will be held liable for violating the rights of people with disabilities, including in the United States.

Thank you very much.


KATHY MARTINEZ: Thank you all. I want to say that I think Tara did give us a beautiful roadmap, and I would like to follow up on both Tara and Arlene's comments to talk about some practical aspects of implementing the Convention here in this country. I would like to start off by saying, I am not a lawyer. I'm probably the only person that's not a lawyer on this panel, so this will not be a very lawly discussion, if that's a word.

Anyway, as one of the positives of the disability rights movement in this country, there have about a number of disability-led organizations that have become very strong and have really impacted the lives of people with disabilities both, I would say, in this country and around the world. Most of the disability-led organizations in the U.S. focus on local issues. Unfortunately, there are too few of us, and most of us are here today, who focus on international issues. I represent the World Institute on Disability. We work on both local and international issues. I want to talk about how our international work has really impacted our local work and how I really believe that that's significant with regard to implementing the Convention, and when we discuss practical strategies for implementing the Convention, how we utilize disability-led organizations in this country, including independent living centers, and also how we utilize our allies. Arlene used the word "allies." It's my personal belief that the disability community, at least in this country, has been sort of moving away from the idea of utilizing allies. I think in order for this Convention to be successful in this country and throughout the world, we have to start ramping up our connection with women's groups and other human rights organizations that are working for the human rights of all around the world.

The World Institute on Disability is based in Oakland, California. Yes, we are from the left coast. And I would say that our role has been really kind of an informal international broker, focusing on - I'm going to talk about three areas. I'm going to talk about the women's work we've done, "Disability World," which is our international webzine, and just kind of how that has spawned other projects, and then our assets development project.

So we've really been around for 20 years. But really I think our significant international work has occurred in the last 12 to 15 years. Our focus has been to really develop effective practice in key policy areas, and involve people with disabilities at all levels of developing and implementing the practice. The example I want to give is the example of women with be disabilities. As many of you know, the women with disabilities were a very big part of the 1995 women's conference in China. I think it was called the Fourth World Conference on Women. I don't know if Tina was there.


KATHY MARTINEZ: Well, a number of us were there and discovered how inaccessible things were. We made ourselves very well known to the leaders of the event. But in so doing, we discovered that there were over 200 women there. We really wanted to capture how those women got there. So we interviewed them and wrote a report. That report resulted in the 1997 international leadership forum for women with disabilities organized by WID and a number of partners. One of the key organizers is in the room. Ilene Zeitzer. It was an amazing event that brought together 600 women from 80 countries and territories. The U.N., through the ILO, was also a sponsor. We had the support of 25 U.S. government agencies. It was essentially five days of networking and programming. That led to some technical assistance work done by WID and its partners with the ILO, the country of Namibia, Russia, China, and one of the most interesting parts for me was it led to working with women back here in the U.S. from minority communities. That work was sponsored by the Social Security Administration and Department of Education. Basically, we came full circle. We really did begin working with minority women, increasing their understanding of disability and our understanding of issues faced by women of color in this country.

In 2000, there was a collaborative team that organized the Beijing plus five, a U.N.-based intensive training of leadership development for young women with disabilities from 30 countries. Many of the women trained at these events became leaders in their countries' support of the U.N. Disability Rights Convention. One of the things we're most proud of is these women began training initiatives in their countries and then in 2002, WID and RI and a number of folks organized a women's side event at one of the first U.N. ad hoc committee meetings. I couldn't remember which one it was, but it was an event to gather research and information to support a separate article pertaining to women and girls. The main event of that side event was that Germany and Korea funded research with WID project support that basically launched a discussion for that. Sorry, it's hard to read braille when the table cloth is part of the action.

So yeah. Ultimately, it resulted in passing that article.

I want to briefly talk about "Disability World" as a tool. "Disability World" is an award winning international disability periodical or webzine that published 26 issues between 2000 and 2007. The involvement of writers and advocates for more than 20 countries resulted in an exchange of practical and up-to-date information on I think some particular issues that hadn't been given in depth treatment, at least on an international level in a consistent way. That would include women and youth. Of course there were papers put out, but what "Disability World" was able to do was allow people to consistently comment, react, write articles in a very consistent manner.

Then the other issue that I think was dealt with very well there was how to use the media. Just using the media. And also the evolution of the independent living movement and how it's being shaped by different cultures, both around at the world and in this country. A main topic that "Disability World" really helped explore was the issue of disability in governance and how people with disabilities were becoming elected or appointed to parliaments and influential government positions. The results were the first international workshop held in South Africa and Norway, enabling some amazing interchange between politicians and policy makers with a wide variety of disabilities. Then we conducted interviews with I think it was like 25 selected politicians from Africa, Europe, and North America, and the publication of the first international study of governance and disability. And I will say that our main contributor to the report, Ilene, I show still in the room because without her, it would never have happened.

Another area that WID - all right. Screw it. I give up the braille.

One thing that the women's work did for us is when we worked in the minority communities, we just saw the need for the bridge to be built between the disability community and at the African-American community or the Latino community, and that really inspired us, because of our work in Central America and Mexico, to work with the Latino community in this country. So my point about, you know, practical strategies for implementing the Convention is that the skills that many of us have gotten globally can certainly work locally to impact people in this country. And I'm talking about immigrants as well as U.S. citizens who come from countries that don't have the extensive disability service system that we have.

Another area that WID is working very intensely in - and when I say WID, WID is a collaborative agency. We've worked with MDRI, we've worked with folks at the Burton Blatt Institute. We do everything in collaboration. There's not one international project that we've done alone. The idea of women getting out of poverty has really never been explored in the area of disability. We were inspired in Ethiopia, discovering that there is an entire poverty reduction movement out there designed for women getting off welfare, helping them to develop assets, teaching them financial literacy and teaching them, you know, how to save money. We thought, why aren't people with disabilities a part of this? They are definitely the poorest of the poor. And why aren't women with disabilities involved in these programs?

So WID has been, along with another - WID has been spearheading really the movement to get disability - to build bridges between the asset development community and the disability community. We have a number of partners in that work as well, including National Disability Institute and the folks at the University of Iowa. So these are just three projects or three areas where the global has impacted the local and vice versa. I think when we do develop our strategy, we of course will honor, you know, the process that set forth in how to implement human rights treaties in this country, but I just really want to say we must - we've got to keep disability organizations like WID, like the AAPD, MDRI, at the center of this. And I think that, you know, we all have experience that is very valuable. I just want to, again, say that the practical aspects, kind of where the rubber meets the road of implementation, are really, as you will agree, very critical.

I think I'll stop there. Thank you.



TINA MINKOWITZ: Okay. I want to start by just saying that for me, it's interesting to be here. This is about maybe a little less than two weeks after the signing ceremony. The signing ceremony marked the end of the major part of the international level process, and this marks the beginning in the U.S. of our domestic process to really see what we're going to do with this Convention.

I want to reiterate what Kathy said and also what my colleague Maria Veronica Reina from the IDC said this morning about this Convention is really being owned by people with disabilities. The Convention, the majority was written by people with disabilities in one way or another. The international disability caucus, in which I was also one of the participants, I call that the IDC was an unofficial negotiating partner. Of course we weren't a negotiating partner, but our opinion mattered. If there were things that the IDC said we cannot live with this to be in the text, that was recognized, and things that we were absolutely opposed to did not come into the text. It was very important for people with disabilities on the international, regional, and national levels to be the ones that created the human rights norms that are now going to be applied to our situations.

That has to continue in the national process of implementation. I think there's a role for all partners, as Kathy said. We need our allies. But the process has to be like the IDC was, one that respects and upholds the leadership of disabled people's organizations on our own issues. That's the least we can ask for as a measure of respect for ourselves and for our human rights. And that's also what is mandated by Article 4.3 is consultation with people with disabilities through their representative organizations. So I would really hope that we can take the IDC in particular as a model for building a national coalition that can work on ratification and implementation and monitoring.

I also want to speak in a funny way for me. I feel as an American, this Convention is an opportunity for us. Our country has experienced, is experiencing, many wounds and very deep divisions. I think that all sides would say that they have - that they uphold the values of individual freedoms and social solidarity, but they just may disagree about what those things mean. I think the conservatives and the liberals, the right and the left, would all say that they uphold these kinds of values, but what do they mean? This Convention is an opportunity for us to explore some of the relationships between individual freedom and social solidarity and try to give new meaning to those values for everyone. And it's for people with disabilities and for American society as a whole.

In a lot of ways, the issue that I'm going to try to speak about in some detail, supported decision making and legal capacity, that's maybe the essence of what this means, the relationship between individual freedom and social solidarity, because we're talking about, instead of the model of legal capacity, where you restrict a person's right to make decisions for themselves, you say, this person can't make very good decisions because of a disability, therefore, we're not going to allow them to make decisions anymore, somebody else has to do it. Instead of that, we're saying, let's not restrict the person's individual freedoms; let's surround the person with the support that can help them benefit from other people's assistance to make decisions for themselves. And support is not supposed to say we're going to do it for you. It's not surrounding in the sense of smothering, but surrounding in the sense of solidarity to give the person the opportunity to use the resources they have and the person still has the freedom to make their own choices and to make their own mistakes.

I want to give a couple of examples from real life of people with psychosocial disabilities. Not everyone identifies with that term, but people who have been part of the anti-psychiatric abuse or community of psychiatric survivors. There's one woman who I will mention by name because she's passed away and she passed away under circumstances that were constituted human rights violation, my friend Ellen Glick, an activist in New York City who founded one of the first organizations of people with psychosocial disabilities in New York City. She died on the operating table from constipation that was induced by a neuroleptic drug she was being forced to take against her will. She was under what's called outpatient commitment, where instead of locking people up in institutions, which is also still done, but sometimes instead of putting you in an institution, they just dictate every aspect of your life by a court order that some psychiatrist and judge feel they think they know what's best for you. So my friend Ellen had to open her home to mental health professionals that she didn't want, she was forced to take this drug that ended up resulting in her death, and she was miserable. She was already miserable because she was estranged from her children. She did become suicidal at times. There were times she was not good at taking care of herself. There were times that people would say she's running out into the street, they have to protect her from being run over. But I want to ask two questions in relation to this: Would it have been better or worse for her to die living in freedom than for her to die the way she did enslaved to psychiatry; and what kind of supports can we give people and really help people live meaningfully to live the way that they want to live, not by making somebody's pain into an occasion for punishment?

I'm going to give one other example that also related to Ellen. I once visited her when she was locked up in a psychiatric ward. She was being injected with a neuroleptic drug against her will and it made her vomit constantly. The psychiatrist came into her room and I asked them, why are you doing this to her? It was obvious the physical misery she was in. The psychiatrist said, we're giving her this to get her to take another neuroleptic. I see that as a classic instance of torture. You don't have to go through a fancy analysis to see that this is intentional affliction of pain and suffering for the purpose of coercion. So it's not only something that goes on in institutions in far away parts of the world; it's happening right here. And this is just an example of one person whose memory I want to remember.

And I want to say also, Ellen was a pain in the butt. I remember her as a friend and I also remember her as someone who made lots of annoying phone calls. I'm sure all her friends remember her the same way. We have to find ways to embrace as communities the people who are pains in the butt instead of locking them up and forcing them to take drugs they don't want so it's easier for communities to say, well, you know, we're taking care of her. We have to learn to interact with each other. We have to learn our own resilience in dealing with people who are pains in the butt because many people may consider us pains in the butt sometimes.

I'm going to go into some explanation of supported decision making and legal capacity, or supported decision making as a model for legal capacity, because I know it's not familiar to a lot of people. Supported decision making is an alternative to guardianship and substituted decision making. It's not a single model necessarily but an approach to legal capacity that is based on inclusion of people with disabilities rather than exclusion, because mostly the way we understand legal capacity, it's either/or. Either you have legal capacity or someone says I don't think you're doing so well at making decisions so you do not have legal capacity. It's based on the principle that every person has a will and is capable of making choices and that autonomy can coexist with interdependence.

I'm going to quote from a paper from a colleague of mine in Sweden: The social model of disability says that the problem is not within the individual but in the society which does not meet this person in such a way that he or she can function. This applies also to problems with legal capacity. It's not a problem inside the individual, which should be met by forced intervention, but that society must relate in another way to this person so that his or her disability regarding legal capacity diminishes.

So we're just talking about the application of what we all understand is the social model of disability to this situation of legal capacity where, for the most part, it really hasn't been applied before. There are some countries that have started to implement various parts of supported decision making, but it hasn't been fully implemented everywhere to the point of doing away with guardianship.

Okay. So supported decision making is an example of the social model. People have a difficulty expressing and communicating their wishes. The solution is not to put in a guardian but to develop ways to make it possible to help the person express and communicate what they want.

Supported decision making is based on a relationship of trust, and it's been pointed out that even if a person cannot use language, even if the disability is so significant or of such a nature that the person cannot use language, spoken or signed, the person can still establish trusting relationships. And that's an insight that was developed by people with intellectual disabilities and their families and supporters. Support can be simple or complex. A person might need some very simple assistance with information in signing contracts or making healthcare decisions. Or a person might need support in making decisions and communicating their will in every aspect of life. Support requires patience and respect for the person's own style and process of making decisions.

So when a person - when a person has that kind of disability, that the person does not speak or sign, there are many other ways to express feelings and desires. Those providing support need to be very attentive to cues that indicate likes and dislikes, and there must be safeguards to ensure that providers of support do not overrule of will of the individual with the disability.

So this is in the Convention. Article 12 guarantees legal capacity to people with disabilities on an equal basis with others in all aspects of life. There's also a positive obligation to provide access to the support people may need in exercising their legal capacity. And these measures must respect the rights, will, and preferences of the person. So people with disabilities have the same rights, freedoms, and responsibilities as others, and assistance is provided without undermining autonomy, dignity, or personhood.

I'm just going to say a couple of the steps to implementation. So transforming guardianship to supported decision making. What does that mean? And this is just one way to think about it. Amend guardianship laws so that guardianship cannot be imposed against a person's will. And the person can choose who they want to have helping them make decisions. The guardian is required to respect the will and preferences of the person. And in that case, we really need to change the terminology. It really does not become guardianship. It becomes something else. So you replace the term and concept of guardian with the concept of support person, because you are no longer making decisions for the person based on what you think is best; you are actually helping the person to make his or her own decisions.

In addition, Article 12, along with other provisions in the Convention, requires the repeal of coercive mental health laws, inpatient and outpatient commitment, all the laws and legal doctrines that would allow forced treatment of people who are labeled with a mental illness. As Arlene said, the Convention doesn't differentiate with regard to free and informed consent, and similarly, it doesn't make any exceptions to equal legal capacity. Mental health services have to be provided on the basis of free and informed consent. Supported decision making will require advocates because the mental health system is not in a position, based on its history and people's history with it, to be providing that support. You need the independent pure advocates that have already been starting to happen.

We need to explore alternative ways to deal with madness. I think in Europe - I'm not sure if it's here so much - there are networks of people who hear voices and talk about it as a positive thing, as something that can be beneficial and something that can be lived with, can be interacted with. It doesn't have to be seen as a symptom of an illness. And we need to explore diverse belief systems in that regard also.

I'll just close by saying people with psychosocial disabilities are members of communities. We need to look at shared risk and responsibility and the equal right to liberty and to live in the community. And I look forward working with you all. Thank you.


HADAR HARRIS: Your notes can't reach all the way down here. I'm sure of it.

KATHY MARTINEZ: Well, he has my cane under the table.

HADAR HARRIS: I knew there was a problem.

There are so many people that I feel that I need to thank for this conference coming together today, but the list is too long and my time is too short. So to all of you, you know who you are, so I will just say it that way. How's that?

It's a pleasure to be talking kind of from an international human rights perspective, stepping back. I am not well versed in disability rights advocacy. I was not a member of any working group. In some ways, I am free because I am also not a diplomat, as I have warned some people around here, but many already know that.

With that said, I believe that this treaty, with or without the U.S. ratification, holds great promise for advocates for disability rights in the United States and for human rights in the United States. Not only for the reasons that have been talked about by other there's morning, but with a growing movement advocating for human rights situating social justice struggles whether for economic and social rights or for traditional civil rights within a human rights framework. There is growing awareness of the importance and effectiveness of international standards, treaties, and evolving norms in this country. The new U.N. Convention for the rights of persons with disabilities is a series of norms, one which can be used effectively by activists throughout the U.S. and the world.

I am going to talk about three or four - I've crossed it out several times during the course of this panel, so I haven't quite decided - three or four-main things within the short time allowed. What kind of strategies has the U.S. taken to limit the effectiveness of treaties and their application, a cautionary note as we move forward this afternoon in our strategy discussion and for advocates pushing for ratification.

Two, which we may or may not get to, why does the international human rights treaty system matter in the United States, particularly when the U.S. plays such a limited role in it?

Three, how the treaties which have been ratified by the U.S. have been used effectively as advocacy and organizing tools, including in U.S. courts.

And four, useful strategies that have been adopted by activists in the U.S., using human rights treaties that the U.S. has not yet ratified like the Convention for the Rights of the Child.

These might give us some ideas for using the new Convention even before the U.S. signs and ratifies this treaty. I only have a few minutes so I'll be very brief. I'll be happy to talk about it more in the discussion.

The United States has an ambivalent and some may say schizophrenic - I don't mean that in any loaded way - relationship to international human rights treaties. While the U.S. until recently has had a reputation as the key promoter and protector of human rights ash the world, the U.S. has only ratified three of the major U.N. human rights treaties: The Convention Against Torture and Inhumane Treatment or Punishment, the Convention Against All Forms of Racial Discrimination, and the ICCPR about political rights. This means the United States has not ratified treaties like the Convention for the Elimination of All Forms of Discrimination Against Women, although 185 other countries have ratified it. It means, even worse, that the U.S. has not ratified the Convention on the Rights of the Child, a treaty that every other country in the world, except Somalia, has ratified. We should be very proud.

It's also important to note at the outset that while the U.S. has ratified three of the seven - now eight - major human rights treaties, where they have ratified, they have done so by placing substantial reservations, understandings, and declarations on the treaties, meant to limit or redefine our country's obligations under the treaty. It's very important to be aware of this as we push for ratification of the new Disability Rights Convention.

The truth is, the treaty monitoring bodies are fairly lax at allowing RUDs that may do just what they intend to. The U.S. has developed several strategies that it has used to undermine many of its international human rights obligations. Most commonly, the U.S. attaches an announcement which states that the United States declares that the provisions of articles X through Z or whatever of the Convention are not self-executing. This means that although the constitution declares that treaties ratified by the senate are the supreme law of the land, with the non self-executing declaration, treaties don't have the force of domestic law and that will require separate legislation. This also means that there can be no legal cause of action for implementation independently. You can't just march into court and say, my rights have been violated and I deserve relief.

Some say that these clauses have been gone through both sides of the Congress. But the truth is, implementing legislation is rarely ever passes. You've heard some say already today that - and the argument is often made - that the rights are already protected under U.S. law. So we can ratify this treaty, but we really don't need to pass any implementing legislation because we already have the ADA. If you look at the disability rights Convention, it is much broader than the ADA. It goes far beyond that. It has proactive obligations for the state, and so any argument that says, we're okay, we already have it, doesn't go far enough.

This is something that may become particularly noteworthy with the new disability rights Convention as the arguments are made that the ADA and other legislation covers the rights enshrined in the new Convention.

The second understanding that the U.S. always attaches to these instruments is a federalism understanding. This states that the covenant shall be implemented by the federal government to the extent that it exercises legislative and judicial jurisdiction and otherwise by the state and local governments, the federal government shall take measurements to end that states and local governments may take for the fulfillment of the covenant. This is a very complicated point. We don't have time to get into it. But basically it shifts responsibility and says, we'll do what we can on the federal level, but hey, states rights, what are we going to do. And it complicated the implementation of these treaties.

I have to take note with great respect to Steve, my good friend Steve, who I warned I was going to do this to. I do believe that the U.S. government takes seriously its commitments to human rights treaties. They show up at the U.N. when the U.S. is under review for its treaty obligations. They respond to the Inter-American Commission on Human Rights. They may not actually implement any of the decisions of the Inter-American Commission on Human Rights, but they do show up and they put a lot of time and effort into their arguments. When Steven said earlier today that some of the reasons behind the U.S. not signing immediately this treaty were that there needs to be a thorough examination of the treaty so that it can be implemented right away, that the states need to be able to apply it directly, and that we won't become a party until all of our domestic law is in order, I have to take great issue with pretty much all three points. That has not been our experience. It's good. There's someone blocking Steve so we can't see each other. It's good. No, don't move. Don't move.


That has not been the case for any of the other human rights treaties that have been ratified by the United States. We do not have implementing language, implementing legislation for any of the other treaties except partial language for the Convention against Racial Discrimination. If there were the threshold test for us to be able to actually join one of these treaties, that would be fabulous. But our country would look quite different than it does today. So with due respect.

So why does the international human rights treaty system matter to the United States? Again, very briefly, as we think about strategy, as we think about using this treaty, it expands the legal framework available. It provides additional forums in which to advocate. It takes us out of just litigating ADA claims in the courts of the United States but brings us into an oversight committee of the United Nations. It enables us to work with coalitions internationally that can create targeted international and strategic pressure that can make a difference in our own domestic advocacy in this country. Carefully. Carefully. International perspectives can empower and bring momentum to local activists as it has been done in many, many types of issues, using these human rights treaties, in particular the case of the Western Shoshone people, who have used the Convention Against Racial Discrimination very effectively in their claims against the federal government on land claims. They have not had their problems solved yet, but they have used it very effectively.

And finally, it brings these issues to the attention of a different set of decision makers, which is very important as well.

I want to spend just a moment talking about advocacy and organizing around the already ratified U.N. treaties. Over the past two years, the U.S. has made great efforts to get up-to-date with its treaty reporting obligations for the three treaties that the U.S. has ratified already. Civil society groups in the U.S. have seized this opportunity to organize in an unprecedented way to use these reporting periods too intervene with the treaty monitoring body to submit shadowing reports or supplemental reports to the committees which aim to fill in the gaps or to correct information in the state party reports, just in the event that they may be a little off from what civil society thinks is really happening. And to attempt to hold the U.S. accountable for its real lack of implementation of these treaty provisions. When the U.S. does eventually ratify the new Convention, the work of the coalitions that have formed in recent years provide an excellent model for activism to show the potential of what can be done. In the case of the torture Convention, a coordination effort started with a very short time frame. They created a set of working groups and brought in a bunch of NGOs working on issues that were relevant to the issues covered in the convention that resulted in several reports. A group went to Geneva, advocated before the committee, and came back with some pretty good language from their concluding recommendations. But they learned through this short process that they had and set up a very sophisticated and very comprehensive and very exhausting process in the case of the ICCPR. It is a long and broad treaty with 27 substantive articles which now has been totally put to shame by the new U.N. Convention on Disability Rights with its really short articles. But 141 organizations and individuals ultimately work together to develop a coordinated, collaborative shadow report which was sent to the 18 human rights committee members, derived from 21 working groups that came together to cover a wide range of substantive issues relevant to the treaty. They worked on what ended up to be a 500 page shadow report with key advocacy priorities. An unprecedented delegation of more than 60 activists went to Geneva to lobby.

I have two minutes. The key things that we learned were that coordinated advocacy, clear priorities, consistent messages, media strategies, both in Geneva and at home, and follow up activity were key. Tina Minkowitz who is on the panelist was a key activist there and can talk more about it.

A process is underway now for coordination around the reporting anticipated to come out this spring. The process holds great hope for the disability rights community. I'm going to skip to just say that as Tara said, it's all of our responsibility to implement this treaty.

The last thing I wanted to just note is the usefulness of the human rights instruments not yet ratified by this country and efforts that have been made on the local level to promote the use and adoption of these treaties on a local, state, or regional level. Just a few quick examples. In San Francisco, the Convention for the elimination of discrimination against women has been adopted by the city and county of San Francisco and is law within that city. I of course am very proud of that because I am from San Francisco but had nothing to do with it. Not only did they adopt it as a city and county-wide ordinance, but a commission was set up to review implementation and money was put behind it to ensure its implementation and to ensure that there was a review for every city office in terms of the city's compliance. There are similar initiatives underway in New York seeking to combine some of these principles to be implemented in New York City. There are other efforts afloat in Massachusetts in a similar way. Remember that the U.S. has not ratified the Convention Against the Discrimination of Women. I know, I'm out of time. Other court documents have been used to try to bring the law of nations into arguments where treaties have been widely adopted by other countries to show customary international norms.

Finally, it's important to note there are many strategies that can be used. Mobilizing communities, as has been discussed. Using local human rights commissions. Using the existence of this treaty now as a basic opportunity for education about these newly existing international norms and standards. If you walk into a room and say, the international community says, here are the rights of disabled persons and X number of countries has signed on to this, 80 countries at least at this point, it's a very strong message, and it shifts the way that you may be able to talk about the human rights of people with disabilities. I have a long list here, but my time is up. Thank you.


ROBERT DINERSTEIN: When I was in the associate dean's office, my arm was a longer.

We do have a few minutes for questions and answers. I also want to alert you to the fact that lunch is in the next room but the plan is to get your lunch and come back into this room because there is a lunchtime speaker, Aryeh Neier. So we'll try to manage that part of the process. Try to get back here so we can hear from our lunch speaker. But we do have time for questions.

HADAR HARRIS: We do have some student conference hosts here to help maneuver for anyone who needs assistance carrying their buffet plate back to the table. They won't eat your lunch on the way back. They better not.


HADAR HARRIS: Everybody is hungry.

ROBERT DINERSTEIN: Anybody who asks a question has to look at his or her colleagues and wonder why they're taking up lunchtime.

TARA MELISH: Just a comment. I think we often look at the non self-execution doctrine as a real barrier to implementation. And I think it would be good for us to turn it around and look at it the other way, in the sense of a real opportunity to make these Conventions real in our local communities. So work at the local level, state level, and national level, turning these broad guarantees into something really relevant for us here. So I think that we should try to change the way we look at that and say, this is the way that we entrench human rights in the United States. We may do it slightly differently than some other places, but let's embrace this. It's our reality and let's embrace it and use it in a positive way.

HADAR HARRIS: I always say that human rights activists are the most optimistic people in the world, because we have to be. And I think that that is a very, very important point. History hasn't been so positive with this, but I think if we turned it on its head and embrace it, especially in the beginning of this really remarkable treaty, there are great opportunities. Particularly because so many of the people advocating are from locally-based organizations. It provides us with clear constituencies to be able to affect policies on the ground.

KATHY MARTINEZ: One thing that is happening, I know for example the city of Santa Cruz has passed a resolution to encourage the government to sign and ratify the treaty, but there is discussion I think in San Francisco and Berkeley to do the same thing with this Convention that San Francisco did with the discrimination against women treaty.

ROBERT DINERSTEIN: Any other questions or observations?

If not, then I think we're ready for lunch. I want to thank the panel for a wonderful set of presentations.