AMY GOODMAN: We’re talking to Stephen Drake, with the disability rights group, Not Dead Yet, in Chicago; Ken Goodman, joining us from the University of Miami, Director of the Bio-Ethics Program there who’s been following the Schiavo case for the 15 years that it has been in the news. We’re also joined on the telephone now, by Massachusetts Congress member, Democrat Barney Frank, and we welcome you as well to this discussion.

REP. BARNEY FRANK: Thank you.

AMY GOODMAN: We started the beginning of the broadcast by broadcasting the comments of your colleague, Arizona Republican Trent Franks, talking about understanding that a person like Terri could wake up. He told that very compelling story of a nurse who had gone in to a woman who had a coma and sang to her every morning. Everyone made fun of her. She went off to another job, and when the woman woke up from this coma, after years, and they asked, 'What do you remember?' she said she didn’t remember people changing her bed, she remembered nothing but a woman singing. What is your response to this?

REP. BARNEY FRANK: That we’re dealing here with a specific situation, that Congress has no business trying to decide on a case-by-case basis. This is a very difficult decision. And there are a number of specific factors. The fact that one woman that Trent Franks talked about responded in this way is really not any way to decide the facts of the Schiavo case. The facts of the Schiavo case should dominate. How much damage has been done? Are there any prospects in her case for recovery? The fact that some person recovered once tells us, obviously, nothing about the chances of any kind of recovery or major change in circumstance here. We also have the question of her wishes. Because we, I would hope, would agree that the wishes of the individual should be paramount. Now the procedure by which we decide that is it went to court. It was very, very extensively litigated in court. And, apparently, every judge that was involved, from the trial judge and the appellate judges, decided, based on what I understand is virtual unanimity among the doctors who examined her and her husband’s testimony and other testimony, that she was in a condition which, according to her wishes, she would have wanted to happen what’s happening, the removal of the feeding tube.

I do not understand how people think that the Congress of the United States, 535 elected officials — politicians, people who are subject to being lobbied, people who bring our ideologies to bear here, our own personal views about what the choices ought to be — presumes to make this decision. And this — Trent Franks telling the story, I think, is an example. I do not think in court when we were trying to decide how ill Terri Schiavo was, what her situation was — Does she have any feeling? Is there any emotion there? Is there anything more than breath? What would she have wanted? — I don’t believe that that one instance would have had any real value, and it shouldn’t have had any value in our decision; but we make decisions not in that same context. So my — I don’t know what was the right thing to do or is the right thing to do regarding Terri Schiavo. I do think that it is clearly wrong for the Congress of the United States, this body of elected officials, driven more by ideology and by self — electoral considerations and advancement to other offices and re-election, shouldn’t be trying to cancel out the decision made by the State of Florida.

AMY GOODMAN: Stephen Drake, your response (of the disabilities rights group, Not Dead Yet).

STEPHEN DRAKE: Well, I think that, you know, if Congressman Frank wants to get a better explanation of this, he should talk to his Senate colleague, Tom Harkin who, even though the press gave it very little attention, held a press conference Saturday, with some of his Republican colleagues and spoke very passionately about his years as a disability advocate, and talking about this being a stop-gap measure, but that he thought this really needed to be something that had to be addressed, you know, in a broader context. But that more time needed, you know, there was more time needed for that, that right now there aren’t good protections for people under guardianship, and that that really does need to be examined.

REP. BARNEY FRANK: I would be all in favor of examining that. I would say this, first of all, one reason you don’t have that at the federal level is that this has always been a decision made by the state courts. And I do not agree with those who have said, based on what we know, that the Florida courts were clearly wrong, that they didn’t give her any rights. This was very extensively tried in Florida. Now, what is motivating this is a decision by the Congress of the United States, I think motivated by a combination of good and bad reasons, to cancel what Florida did. If people wanted to have a broader statute, that would be very important. Look, I think we have a lot of problems. The irony has to be stressed, that at the time when they were passing this bill to overturn what Florida did, the Republican House were cutting Medicaid very substantially.

STEPHEN DRAKE: Absolutely.

REP. BARNEY FRANK: A lot of the people we are talking about, as Stephen knows, who are in this kind of situation, are being paid for by Medicaid. So, the contrast — I mean the culture of life is coming up against the culture of greed, which says tax cuts for people making millions of dollars are much more important than adequate payment of Medicare, for the people would take care of anyone in Terri Schiavo’s situation. But I still — then go back and say that, if people want us to look at this overall, that’s one thing; but that’s not what we did. In fact, it said, this is a non-precedential thing; it’s only for the Terri Schiavo case, which I think is going to be hard to sustain. And it’s one thing to mandate that there be a set of procedures that have to be followed; it’s another for the politicians to intervene in a case-by-case basis, and for people elsewhere in the country to think that if this very difficult, very emotion-laden, painful decision comes to them that somebody might decide to politicize it and make it a big public issue. And, you know, family disputes, unfortunately in this kind of a situation, aren’t all that unusual. Siblings can disagree. The children of an aging parent can disagree. We have parents versus husband or it could be wife. I do not think Congress should have set this precedent, which we in fact did set, of deciding this case by case, and I don’t think the kind of argument we heard from Trent Franks belongs in a rational discussion about what to do in this particular case.

AMY GOODMAN: Stephen Drake of Not Dead Yet.

STEPHEN DRAKE: Yeah, I — you know, I — There were a lot of factors that led to this, and I think there’s nobody I know in the disability community that was happy about the bill that was passed or the time crunch. What we would really like to see is to have, you know, a serious and thoughtful exploration of the broader picture. I think there’s problems with the evaluation of people with cognitive disabilities, what the accuracy of families — and this goes beyond Terri Schiavo. There’s also been moves in California, you know, where some of the same laws about using a fairly low standard of proof to withdraw a feeding tube, was tried — they tried to apply it, not just to people in persistent vegetative state, but to people in what they call 'minimally conscious state,' people nobody was arguing were unconscious, but who couldn’t communicate in an effective way. There’s really a lot going on that goes beyond just these simple things around persistent vegetative state.

AMY GOODMAN: Ken Goodman of the University of Miami.

KEN GOODMAN: And what’s significant here is that we’re talking about one particular medical intervention. Why are we not talking about ventilators or dialysis or chemotherapy? The effect of trying to make this a disability case has the effect of unraveling what had been settled across the board for a generation, namely, that people have the right to refuse medical devices either of themselves if they’re able or through their family members if they’re not able. Representative Frank is saying this is not the business of the Congress. What he’s saying is, that this is something that’s a difficult decision in any family. But it’s made every day, around the country in a way that is respectable — respectful, in a way that’s decent, in a way that does not cause any suffering, in a way that hews to all faiths’ traditions and all moral systems. To introduce the Terri Schiavo case to try and unravel that accord, when, in fact, the mere existence of a medical device can’t impose on you the duty to use it, is — can only be explained by narrow, ideological concerns. Not Dead Yet has raised our consciousness about the needs of people with disabilities for more public support, for more accommodation, for more of the sorts of things that your allies in this case have so far not been willing, either in Florida or in Washington, to give you a second’s notice. They’re using Not Dead Yet in the Terri Schiavo case for despicable purposes, when, in fact, the disability community has no reason to believe that there’s any discrimination against a person with handicapped here — handicaps here at all.

AMY GOODMAN: Let me —

KEN GOODMAN: The ideology of it is really quite frightening.

AMY GOODMAN: Let me bring Congress —

STEPHEN DRAKE: Wait a minute.

AMY GOODMAN: Stephen Drake.

STEPHEN DRAKE: Nobody uses Not Dead Yet. We’re very clear. One thing I haven’t said here, let me say very clearly: We align on specific issues; and the way we look at it, we see scary things on the left and the right. The left are developing a scary, knee-jerk reaction to salute any better-dead-than-disabled policy that comes along; and on the right, they seem to be looking at the slow approach, the slow torturous route to kill us off, through withholding — withdrawal of vital services, medical supports and that. We see it on both ends. We are not aligned, you know, as friends, necessarily of either end of the spectrum.

AMY GOODMAN: Let me bring Congress member Barney Frank back into this discussion around the issue of politics and the time that the Schiavo case comes. ABC coming out with this memo that supposedly was circulated to Senate Republicans about the significance of this moment. Tom Delay, in big trouble, ethical trouble himself, targeting Senator Nelson in Florida, as saying that he is vulnerable in his next election. Barney Frank, can you talk about this?

REP. BARNEY FRANK: Yes, it is an example of why we should not be doing this. And can I — I appreciate what Mr. Goodman said. Let me be clear when I say it’s not the business of Congress, it’s not the function of Congress to make a case-by-case determination. We’re not capable of doing that and we certainly didn’t do it in this case. It is entirely reasonable for people to come to Congress from the disability community and say, 'Look, we've done a survey and we believe, nationally, procedures are too weak and let’s look at it.’ People have analogized this to the civil rights movement; and in the case of race, particularly in the south, we did step in and say, 'Wait a minute, you know, what's traditionally been states’ rights, we’re going to take away.’ But that was after a very serious study had established a pattern of discrimination against African-Americans, and I don’t know whether such a pattern exists or not. I do know there is some legitimate differences. I’ve debated and argued with some members of the disability community. I strongly believe that we should be honoring individual choice. Now, I’m a supporter of the Oregon assisted suicide law. I’ve had some people in the disability community tell me they don’t like that. They think it leads to pressures on individuals who can’t withstand them. So, there’re going to be some legitimate differences of opinion once we establish the primacy even of individual choice. I would honor individual choices that some people wouldn’t honor, feeling perhaps that because there’re circumstances, it’s not a real choice. And it’s certainly the case, I think we would all agree in this, that as you reduce the financial resources available for what are sometimes very expensive efforts for people to maintain some kind of life, that you probably increase the pressures for people to make the death decision. I agree with that, and I think that’s one of the things that makes it seem very hollow to me when the right-wingers cut the budgets and cut taxes and deny adequate resources and then say, 'But we're for the culture of life.’ Because I think they have increased pressures in the other direction.

Now, the — To get to your specific question: I’m not surprised by that. I mean, basically what that memo says is: Politicians — 536 of us, George Bush, 100 Senators and 435 members of the House of Representatives, elected official who run for office and who worry about re-election, and etc., and majorities of the public — that politicians making an important decision that gets national attention are calculating the political advantages. That is further evidence of why we should not — it’s confirmation of why we shouldn’t be involved. It also does show, yes, there is on the Republican side, a combination of genuinely sincere people who I believe want inappropriately to impose their particular religious views on others in matters that don’t affect and shouldn’t affect the public policy, but also there are some very clever people who exploit the sentiments and that this is part of it. Because, as Mr. Goodman said, this sort of thing happens, sadly, fairly frequently. We have these kind of illnesses or accidents; and yes, the fact that this one case got blown up, clearly politics was a factor in it.

AMY GOODMAN: On that note, I want to thank you all very much for being with us. Barney Frank, Congress member from Massachusetts, Democrat. Ken Goodman, director of the bioethics program at the University of Miami, and Stephen Drake, research analyst for the disability rights organization, Not Dead Yet.