The U.S. and the CRPD: An Interview with USICD President Marca Bristo


(This article originally appeared on NationofChange. It has been reprinted here with permission.)

Last week, I penned an article on the United States’ failure to ratify the United Nations’ Convention on the Rights of Persons with Disabilities (CRPD). It is an international treaty intended to bring equal rights to the nearly one billion disabled individuals across the globe. Though modeled on the 1990 Americans with Disabilities Act (ADA), the CRPD has thus far failed to achieve the senatorial super-majority required for ratification in the United States.

To understand better the U.S.’s reluctance to join the Convention, I contacted Marca Bristo, President of the United States International Council on Disabilities. For over thirty years, Ms. Bristo has been a tireless advocate for the rights of the disabled, having helped to craft the ADA and providing essential input into the CRPD. She is the founder and CEO of Access Living, a Chicago-based agency that champions social reform for disabled Americans, and in 1994 she was appointed by President Bill Clinton to head the National Council on Disability. She has also served as the North American Vice-President for Rehabilitation International.

Pierce Nahigyan: Ms. Bristo, thank you for taking the time to speak to NationofChange. Before we discuss the CRPD, can you talk a little about what it was like for disabled Americans and you personally before the passage of the ADA?

Marca Bristo: The best way I can say it is that my life changed on May 29, 1977, when I dived into Lake Michigan and broke my neck. One minute I was this employed, independent, world traveling person and the next minute I was unemployed, in the hospital, with no health insurance, no way to get around, no transportation that I could use, no housing that was accessible and certainly none that I could afford. So it was really a different universe.

People with disabilities timed our outings according to when we needed to go to the bathroom, because there were so few bathrooms that we could use. Much of the time, when we would go out to dinner, you would enter through the service entrance where sometimes there were ramps in the back. I saw all too many kitchens.

PN: Before the ADA, what was being done to change that disenfranchisement, if anything? Had the Civil Rights Act addressed disability-based discrimination?

Marca Bristo, President & CEO of Access Living. (Image Credit: Webster University)

Marca Bristo, President & CEO of Access Living. (Image Credit: Webster University)

MB: The Civil Rights Act was passed in ’64 and the ADA didn’t come about till 1990, and you’ve got to say, ‘what took so long?’ Part of it was there had been such oppression of people with disabilities that we didn’t even think it was wrong.

For me, what happened was: the director of the woman’s hospital where I worked  read an article about me in the hospital newspaper, that I had just  broken my neck, and she called me out of the blue and asked me if I wanted to come back to work. And that was about five months after I broke my neck. Pretty much the words that came out of my mouth were, ‘I can’t work.’ It happens that quick. All of a sudden you start to buy into that common stereotype, myth, stigma, whatever, and internalize it.

When I did go back to work, she eventually sent me to a conference in Berkeley where the world was totally different out there. There were curb cuts everywhere, people with disabilities were on the campus and out in restaurants and on the faculty of the conference I was attending. I really felt like I was in a new country

PN: Was Berkeley really on the cutting edge of equal rights at the time?

MB: Yes, and I didn’t know why. I stayed up all night talking with this one woman and asked her that question. She told me, ‘Well it’s because of a group of activists on the campus who’ve been fighting for rights.’ And in the appendix of a little birth control handbook—this was a conference on sexuality and disability, which right there was way ahead of its time—there was a reference to Section 504 of the Rehab Act, which is the precursor to the ADA. It was a non-discrimination regulation that said if you do business with the federal government you can’t discriminate on the basis of disability.

PN: Was that the first mention of disability rights in federal law?

MB: Remember, this law had been passed in ’73 and what had happened was, by ‘77 there were no regulations yet. And so the communities in Berkeley and Washington organized sit-ins framed upon the civil disobedience of the movements that preceded us, and they were successful in getting the federal government to finally issue those regs. I didn’t know any of that, though. I was brand new to disability. So there were pockets of people that were beginning to reframe the disability experience from a health issue into a civil rights issue and eventually, because of going to that conference, I came back to Chicago and got involved in what eventually became Access Living.

When I read those lines in Section 504, prohibiting discrimination on the basis of disability, it was like this burden just being lifted off of me. I could see, okay, these curbs that blocked me from going to the grocery store, we can get rid of them—we just need law, we need to call it what it is. If you know civil rights, especially in the women’s movement there’s this whole concept of internalization of oppression where you do it to yourself and you don’t even know it.

I’ve come to think that it took our community a while to shed those notions of paternalism, that ‘we can’t’ mentality, and say “no” —to words like ‘homebound,’ those kind of things—no, no, no, I’m stuck in my home because there are stairs. I’m not homebound [laughs]. If I had an acceptable home, I wouldn’t be in here.

To juxtapose this forward, during the ADA I was the President of our national association, called the National Council on Independent Living. Afterwards, after the ADA was enacted, I was appointed by President Clinton to chair the National Council on Disability. And therefore I had a responsibility as the new chair of that agency—the first disabled person to chair it, by the way—I had  to decide, ‘Okay, now how do you follow that?’ I really believed the first thing we could do was focus the nation’s attention on strong enforcement.

So when the Justice Department then began to enforce the ADA, we wanted to make sure there was more teeth in it than what 504 had. While the regulators were on the books, there were a lot of people that didn’t know they existed, and they weren’t enforced in a solid way. Making sure that the ADA was strongly enforced became a real priority of the Clinton administration and I’m so grateful that they really took it seriously and set the tone for the evolution of the law.

PN: How did that eventually lead to the United Nations’ Disability Treaty?

MB: All these country delegations started calling our office saying, ‘We heard that you helped author the ADA, we’re sending a delegation of members of parliament.’ Or, we’re sending some agency representatives, or we have organizations of disabled people coming over saying what is this ADA? And we spent a lot of time talking to other countries about what we had done here.

PN: The CRPD was signed by the U.S. on July 30, 2009, two years after it had been adopted by the U.N. Why did it take us so long to acknowledge it?

MB: We were late to sign it. I was actually at the signing. The signatory document looks like a New York City phone book; each country has its own page and by the time we signed on  there were over a hundred signatures proceeding us. Our signature page was quite late in the process and that’s because we had to wrap up the Bush administration, which was not going to sign it. When President Obama came in, it was a campaign commitment that he made.

PN: But the U.S. can’t ratify the treaty until Congress gives its approval. What goes into getting that approval? 

MB: The U.S. does not like to sign treaties unless it feels it can live up to the mandates in them. Therefore it was a good long review, with all the agencies of government looking at their respective agencies’ obligations. Then the Justice and State departments issued a transmittal document to send this over to the Senate. Once it gets to the Senate, it has to give its advice and consent, which requires a super majority or 67 votes, and then after the Senate does that it goes back to the president and the president then signs it. Right now we’re in the phase where we’re waiting for the Senate consent so that the president can sign the ratification document.

PN: When the CRPD was first considered for ratification, it was rejected. Now that it’s under consideration again, what is the political climate like in Washington? Does it stand a better chance than it did in 2012?

MB: Well the dynamics are a little different for a whole variety of reasons. We really thought we had the votes when we came up last time and then there was a maneuver done by some of the very conservative Republicans—a sign-on letter went around the Republican caucus that said treaties should not be ratified during a lame duck session—well, we have signed on to other treaties during lame duck sessions, but that was the reason given. And some of the members who signed were those who had told us they were with us, so it was a very disappointing loss to us all.

But because they cited a procedural issue, they never really had to weigh in on the substance. This time around, we’ve had a lot more opportunity to garner additional support from additional groups. The opposition has not picked up any new supporters, their arguments are the “same old, same old.” But the minute we start to make progress on members understanding that some of the arguments they’re making aren’t valid, then they switch the argument.

Your article cited that there are some who just don’t want to see the U.S. engage in any kind of international treaty that they think will undermine its sovereignty or interfere with the separation of state and federal laws.

PN: The sovereignty issue is a major one, which USICD sought to clarify in its 2-page Myths and Facts about the CRPD. Is the U.S.’s sovereignty endangered by the CRPD?

MB: No, for a variety of reasons. But even if you could interpret the treaty to have those impacts—which we think are specious to begin with—just to be sure, there were amendments—reservations, understandings and declarations—that the administration put forward and which the Senate then strengthened to make sure. And even with those amendments the first time around they weren’t willing to support this. This is the first time in my thirty-some years of working in the field of disability rights that we have not had a civil rights law go forward in a bi-partisan way.

We’re still very hopeful that ratification is going to occur. We believe that we’ve been able to have hearings that put additional facts on the record. Even some of Senator Corker’s own witnesses articulated in those hearings that with the appropriate reservations, understandings and declarations, any issues of sovereignty—and federalism and the other issues raised by some of the opposition—could be put to rest.

PN: Another major issue raised by Republicans is the CRPD’s language that deals with sexual and reproductive health. Their argument is that it will allow for a “global right to abortion.”

MB: That’s just completely untrue. It’s a nondiscrimination section of the treaty where those clauses come in and it basically says people with disabilities have the same rights to sexual and reproductive health services as non-disabled people. Period. End of story. It affords no new rights whatsoever and, further, the amendment that was put forward on that issue addressed that there’s no specific healthcare procedure that will be changed as a result of this treaty.

I might point out that nearly all the Catholic countries in the world are in support of the CRPD, in part because of the life affirming principles that are in the treaty. In countries that force abortion where a child with a disability is in the womb; or where a disabled woman, just because she has a disability, is being denied her right to be a mom; those are the kind of things the treaty speaks out against.

PN: Something I wasn’t able to tackle in my first article was the opposition to the CRPD from the homeschooling movement. Can you explain where that came from?

MB: It comes from a gentleman by the name of Michael Farris, who is the founder of Patrick Henry College. He also has a couple of different political organizations that support the home schooling movement one of which is The Home School Legal Defense Association. He has put forward that because there is language in the treaty that speaks about the best interest of the child, that means that the U.N. is going to be able to come into your living room and tell you that you can’t home school your children. Ironically, here in the U.S. the very same concept of best interest of the child is integrated into the Individuals with Disabilities in Education Act and is in part an idea that gives rights to parents in this country to be able to home school their children.

The treaty does not in any manner, undermine people’s ability to homeschool their children. If you read some of the stuff that’s been put out to perpetuate these myths, they’re unbelievable. They’ll also say things like if this treaty ratifies, every home will have to have a ramp. There’s numerous pieces of misinformation that they have put out and it’s because they don’t want to see the Treaty on the Rights of the Child ratified for the same reason.

There’s nobody from the United Nations that’s going to come into your living room and tell you you can’t homeschool your children.

PN: One final question. To those who say, ‘America doesn’t need the CRPD because we already have the ADA, IDEA, the Rehabilitation Act, etc.’ Why is it important for the U.S. to ratify the CRPD?

MB: Oh, several reasons. The treaty is not going to change the world overnight, but I will tell you it’s already having an impact. It has changed the dialogue in the same way that the ADA changed the dialogue here. Countries around the world are beginning for the first time to see people with disabilities as citizens, they’re beginning to change laws, change constitutions, and give voice to people with disabilities who haven’t had it before.

Over time the treaty is going to make the world a much more accessible place and in so doing begin to lift the yoke of poverty off of the world’s one billion people with disabilities. We’ve never been seen in mainstream public policy dialogues at the global level, and we are now beginning to see that take hold. Consequently, for people around the world, they’re having their rights acknowledged for the first time.

As to why the U.S. should care: First, military families tell us when they’re overseas, if they have a child with a disability, they’re very limited in where they can go, what assignments they can take. And our military members who have become disabled and continue to serve, they will benefit from the increased accessibility.

But I think the other really important thing is, we are the standard bearer, we are the ones that lit the world on fire. We’re the United States of America, and to many, many countries we still are that beacon of hope, especially in the area of human rights. And my colleagues tell me, ‘If the U.S. doesn’t ratify the treaty, my country thinks there’s something wrong with it,’ or ‘We’re not going to take it as seriously if you don’t ratify it.’

By ratifying it, we really do have a seat at the table that enables us to participate in the committee that oversees this process, which is to provide guidance on a wide array of issues as countries struggle to figure out how do they implement this in their own country. So, I think there are many compelling reasons to do it. At the end of the day, it’s the right thing to do. In my mind, this is one of the success stories of American democracy, and why we wouldn’t want to declare it in a bipartisan way, escapes me.  We should be proud to do this.

For more information on the CRPD, visit the U.S. International Council on Disabilities or

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