(Video) Clueless In Congress: Senator Sessions Badgers Mom Bankrupted by Son’s Illness

Jodi Jacobson

This past Tuesday, Senator Sessions (R-AL) literally badgers a mother forced into bankruptcy by her son's illness and death from cystic fibrosis because she didn't fill out a computer form correctly.

These days, when you think of the health care reform debates now going on, you might rationally think "what next." C-sections, rapes, domestic violence as pre-existing conditions. Parents made to leave jobs and deliberately live below the poverty level to get care for their critically ill children. Women told to get sterilized….It goes on.

As these stories pour forth, you might think that conservatives would look around and say, hey, compassion requires us to rethink what is going on here.  But if you think that the Republicans have learned any lesson from the fallout of Senator Kyl’s statement about "not needing maternity care," think again.

In the following video from a hearing on bankruptcy and medical debt held on Tuesday, October 20th, 2009, Senator Jeff Sessions (R-Alabama) literally badgers a mother who has gone bankrupt due to the costs of her son’s illness with and subsequent death from cystic fibrosis.  (The video is longer than most; watch it through to the end.) As she recounts the struggle caused by losing her home, her and her husband’s jobs, needing money for food, gas, and daily living, he seems determined to tell her that she might have needed "credit counseling" and perhaps should have been more effective in filling out computer forms.

So what next?  I don’t know…it just keeps coming.

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Analysis Abortion

Disability, Abortion, and Ethics: A Response to Sierra

s.e. smith

A recent piece by Sierra published by Rewire argued for the morality of aborting a disabled fetus. This is a response to that argument.

Cross-posted with permission from Tiger Beatdown.

I’m still seething over this post at Rewire, in which I am essentially informed that my life has so little value, is so not worth living, that I was such a burden on my father to raise, that I should have been aborted. Things like this are why I have problems interacting with the mainstream reproductive rights movement, which seems bent on using us as a tool just as much as the right is. In this piece, in which not a single actual living disabled person appears, the author proceeds to lay out an argument for abortion for disability that has, rightly, gotten the disability community up in arms.

It starts with a very dismissive, snide, flip introduction in which the author effectively says ‘read this or not, I don’t really care, but don’t hate me!’ The key sentence of the introduction tells you a lot about what is to follow: ‘I believe that abortion of a disabled fetus can be a compassionate choice made for morally sound reasons, and does not at all conflict with the respect due to disabled people.’

I…disagree.

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But let’s take Sierra’s points one by one, because it seems that whenever disabled people react with anger to rhetoric like this, we’re penalised for it. So, Sierra, here we go. Prepare for logic.

Sierra points to an article about prenatal testing, which I happen to agree is great science. We can find out more about a fetus than ever before with the benefit of tests which allow us to make informed choices about the pregnancy. Those choices can include abortion, preparing for birth, taking special precautions, and other measures that are private medical decisions. Inevitably, the fact that it’s possible to test for many common disabilities means that abortion for disability is going to come up as a topic.

This is a fraught ethical subject, and it’s fraught in no small part because of the social devaluation of disability. On the right, people with disabilities are fetishised as tools and instruments to a larger end; conservatives make sweeping statements about ‘respecting life’ when it comes to fetuses who might be born with disabilities, though of course they do nothing to support those fetuses once they’re born. This rhetoric does not allow room for the fundamental humanity of people with disabilities. Meanwhile, the left treats us like we don’t exist and aren’t a part of society, and don’t belong in society, frequently advancing arguments like Sierra’s: that abortion for disability is, quote, ‘a positive moral choice.

She says the article fetishises disability. Again, I agree on this point. Like a lot of media, it talks about disability as a ‘gift’ and the author, like Sierra, apparently didn’t feel the need to include the voices of actual disabled people in her piece. Sierra proceeds to give lip service to the disability rights movement, but here’s the moment where she goes off the rails:

‘Respecting the rights of disabled people does not mean honoring or celebrating disability itself.’

An actual recordskip occurred in my house at this moment. Excuse the fuck out of me, but some aspects of the disability rights movement absolutely are about honouring and celebrating disability itself. I’m disabled and proud. I love who I am and I’m not settling for this body and mind, dealing with it because it’s there, overcoming anything, or making the best of a bad deal. I am who I am because of my disabilities, I love who I am, I love my disabilities as part of myself. You’re better damn well bet I’m going to honour and celebrate that, and raise my fists in solidarity with disabled people all over the world who feel the same way.

At the same time, that doesn’t mean all disabled people share that sentiment and experience. And that’s okay, because there’s room in disability rights for everyone. What I am pushing for is disability as a value-neutral status that individual disabled people, not the people around them, get to make of what they will. Maybe that means celebrating your amazing body. Maybe that means corrective surgery. Maybe that means something else entirely.

‘I’d wager most people who are disabled would rather not be.’

Wrong. Maybe instead of speculating about the experience of disability, you should have consulted actual people with disabilities, explored the vibrant and lively disability rights movement, and interacted with the people you’re writing about. I’m assuming you didn’t think to do that because you apparently believe we live lives of unrelenting suffering, and/or we can’t communicate with nondisabled people; or was every potential interview subject too busy to fit you into their schedules between morning misery and afternoon moping?

Sierra says:

I get that who we are is shaped by experience and that many disabled people consider disability to be integral to their personalities – just as I see poverty as a formative experience for me – but I doubt they would have chosen to be disabled in the first place. Would they have voluntarily given up able bodies for the wisdom earned from being disabled? Would they refuse treatment, if it were available? Would they choose to suffer disabilities just so that their parents could have the “reward” and “special gift” of raising them?

Let’s deconstruct this a bit. Again, Sierra is speculating on an experience that is not hers, and she’s making assumptions based on her own view of the world. She ‘doubts’ that we would choose to be disabled. She doesn’t know that. As she herself acknowledges in her own snipey introduction, fetuses aren’t capable of making choices (we’re focusing, for the purpose of this piece, on congenital and genetic disability rather than acquired disability). I can say, from my own experience, that I wouldn’t choose to be any different even if, yes, sometimes my disabilities are frustrating and pose obstacles for me. I can also say, from my own experience, that I have refused some treatments for my disabilities, and so do some other people with disabilities.

In fact, some people forcibly labeled as disabled, like some autistic people and some Deaf/hard of hearing folks, don’t identify as disabled. And they refuse treatment for what they (rightly) see as a natural human variation.

Speaking of fetishising disability, Sierra, I’m not ‘wise’ because I’m disabled. I’m a human being. Disability hasn’t conferred any more or less wisdom. Disability is not ‘suffering,’ and the fact that you use this word clues me in to the fact that you have a very ableist view on the world, for all that you attempt to use language from the disability rights movement to convey your understanding of what it’s like to live with disability. And you’re centring parents here in a rather striking way.

Wanting to eradicate a condition that causes suffering or dependence in a population is not the same as wanting that population to die.’

Statements like ‘I want a cure for autism‘ or ‘I want a cure for Down Syndrome’ are eliminationist in nature. These statements indicate that you want an entire population to disappear. And, newsflash, attitudes like these are why parents who torture, abuse, and kill their disabled children are often not held accountable. Because raising a disabled child is such hard work and the extenuating circumstances should surely be considered when evaluating the case.

Sierra and I actually agree on point two; acting like disabled children are some kind of special lesson and growth object is indeed dehumanising and gross. That said, disability doesn’t create inherent suffering. It’s notable that she focuses on only two disabilities, Down syndrome and cystic fibrosis, in this piece. I’d be curious to know which other disabilities she believes fall under the rubric of ‘suffering.’ Individual parents need to make individual choices based on available information about the pregnancy and their lives, something I think Sierra and I can also agree upon, but she’s pushing very hard on the argument that abortion for disability is almost necessary if you want to make the correct ethical choice for a pregnancy.

Simply put, it’s not. It’s not like the idea of aborting for disability is anything new, or that parents don’t get a lot of pressure to jump to abortion rather than more information as soon as a prenatal diagnosis is delivered. Choosing abortion because you don’t have the capacity to care for a child is a reasonable ethical choice, and it’s not the only option, though I’d note that people are not exactly lining up to adopt disabled children, nor are social services rushing to provide support to disabled children and their families. Choosing abortion because you feel no one could offer the child a good quality of life is a value judgment on someone else’s life, but it’s also a personal choice because you’re the one carrying that fetus, which makes it yours to make and no one else’s. Ultimately, the option people feel most comfortable with is a personal decision, and that decision is the most ethical one for a given pregnancy.

Next, she brings up the issue of class, a key component in this discussion, as I’ve actually talked about here in the past. However, Sierra’s approach to it is utterly backward. Rather than saying we need to talk about the lack of social support for people with disabilities, including both the lack of financial resources and the ableism rife in this society, she apparently thinks the solution is to abort disabled children. Because their lives aren’t worth living (see ‘suffering’ above) and their parents can’t afford to give them the quality of life they deserve, the natural solution is not agitation on a larger scale for social change to tear apart the system that forces people to make the decision to abort for economic reasons, but to simply promote abortion as the right moral choice. No one should have to abort a children for economic reasons or for lack of social and community resources, and that is what we should be working towards.

Her next point rehashes some very old, tired, and boring arguments about how caregiving is so hard and won’t someone think of the family. Here’s the thing: Providing care for any child is difficult, and disabled children do present some extra challenges. The problem here, though, is not that children with disabilities are inherently difficult to care for, but that caregivers enjoy absolutely no social support.

Accessing respite care, funding for aides, daycare, and other forms of assistance is virtually impossible, unless you are, yes, very wealthy. We need to be talking about this. We need to be asking why discussions about abortion for disability focus on how awful disability is and how painful it is to have a disabled child, instead of how terrible it is that society can’t be bothered to promote the welfare of disabled people. We need to be asking why arguments like Sierra’s are advanced over and over again, and why people like Sierra don’t examine the deeper social issues going on here.

In her next segment, Sierra makes some striking assumptions about life with disability. She focuses specifically on cystic fibrosis, a condition that actually has variable presentations. And, thanks to medical advances, is much more manageable today than it once was. Does that mean I think people carrying fetuses who test positive should be forced to carry them to term? Absolutely not. But it does mean that I think people making decisions about abortion on the basis of disability need to actually do their homework to find out what they, and their children, might be facing if they decide to continue with the pregnancy.

Finally, she says that the article she references erases parenting, and I agree on that point too. Much anti-choice rhetoric completely elides the bodies of the adult living people who can survive independently who are rather intimately involved in the situation. Ultimately, the pregnant person gets to decide whether to carry a pregnancy to term, for whatever reason. Much as people with disabilities are often talked about and around, pregnant people are often ignored by the right because they are an inconvenience; the right, like the left, doesn’t want to be confronted with the actual people who will be immediately affected by its rhetoric.

I’ve often said that choosing abortion for disability doesn’t mean that you hate disabled people. But when ableist society is contributing to the pressures on you to abort, you need to acknowledge that. I want all children to be born into homes where they are eagerly anticipated and will receive love and support throughout their lives, no matter what their disability status might be. And I want all parents to have all the information they need about their pregnancies to make the best choices for them, and for their children. And I want all parents to have social support so they aren’t forced to make choices on the basis of external pressures like lack of money, lack of access to care, and other issues that can come up when making decisions about a pregnancy.

But I’m not going to sit still for someone telling me that my life is suffering, that my life is not worth living, and that ergo I should have been aborted and people like me should be aborted. I’m on the autism spectrum. There are a lot of people in the world who want to eliminate people like me. I’m not interested in playing the gross anti-choice game of ‘just think who might have been aborted!’ but I would like to point out that because there’s a widespread belief that autism is bad and should be eliminated, living autistic people, as in actual human beings who are around right now, face increased prejudice. That includes hate crimes committed against us, it includes discrimination, it includes abuse by parents and ‘caregivers.’

And that is a problem that articles like this contribute to. I don’t want to be used as a pawn by the right or the left to advance its own agendas about reproductive rights and parenting. Ultimately, parents need to decide what they are equipped for, and I want to provide a world where their choices are supported.

In a world where people, yes, celebrate and honour disability, our lives would be valuable and we would be considered on equal footing as nondisabled people. And in that world, people wouldn’t talk about disability in terms like ‘suffering’ and say that parents have a moral obligation to abort to ‘avoid inflicting suffering.’ They’d say that all parents have the right to make decisions about what happens inside their own bodies, on the basis of as much information as possible, and those decisions are private and not subject to public discussion and judgment.

This should go without saying but I’m saying it anyway: Please don’t bother leaving comments telling me that disability in general is the worst thing ever, that abortion for condition Xyz is morally sound because it’s so awful, that you had a friend once who wished she’d never been born, that progressives aren’t ableist at all and I’m just being unreasonable, that you have a disabled family member who’s just too much work, &c.

Commentary Politics

Santorum’s One Track Mind: Denying Insurance Coverage of Prenatal Tests Would Hurt Poor Women Most

Martha Kempner

Presidential hopeful Rick Santorum took his single-track, anti-abortion thinking to a very dangerous level this weekend when he suggested the government should not pay for prenatal tests because they encourage abortion.

The week before I was scheduled to have my “nuchal” with my first pregnancy, Jane Brody wrote an article in the New York Times about how this non-invasive test for Down’s Syndrome was becoming more and more accurate and poised to replace amniocentesis in a few more years.  This was 2006 and while all of my friends in New York City had had this relatively new test, it was not available to pregnant friends in other areas of the country or even those going for prenatal care in the nearby New Jersey suburbs. Apparently, if Republican Presidential Hopeful Rick Santorum had his way it wouldn’t be available to any of us—at least not with any kind of insurance coverage. 

This weekend on CBS’s Face the Nation and in some of his campaign speeches, Santorum built on his anti-birth control momentum and went after health care reform for supporting insurance coverage of without a co-pay for prenatal testing.  His argument: such tests encourage abortion.  With this declaration Santorum took his single-track, anti-abortion thinking to a very dangerous level; in his world women would not be able to prevent pregnancy, terminate an unintended pregnancy, or even check on the health of their pregnancy just in case it might lead them to consider termination. 

In fairness, Santorum doesn’t oppose all prenatal tests—I’m sure he’s fine with women drinking that horrible bottle of orange sugar-water to test for gestational diabetes because that just leads to a difficult diet not a difficult decision.  He’s only worried about the ones, like the nuchal, that can reveal severe problems with the fetus. 

Officially called the nuchal translucency, this test is done between 11 and 13 weeks and combines a high-quality sonogram with blood tests. During the sonogram, the technician measures the thickness of the fetal neck and the subsequent blood tests look at levels of pregnancy-associated plasma protein A (PAPP-A) and beta human chorionic gonadotropin (HCG).  The results are not as exact as they are with an amnio, you don’t get a yes or no, rather they are given in the form of a probability.  For my first pregnancy, for example, at age 34, I had a 1 in 500 chance of having a baby with Down’s Syndrome based solely on my age. The test determined that my actual chance was 1 in 4,450 (or so, I don’t quite remember).  The test also revealed a minuscule chance of Trisomy 18 something like 1 in over 17,000. These results gave me a great deal of peace of mind and I chose not to have an amniocentesis which is more precise but also more invasive and carries a slight chance of a miscarriage.

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The second time was a little different; at 37 I was placed in the category of AMA (Advanced Maternal Age) and my chances of having a baby with Down’s Syndrome were 1 in 225 based solely on age.  I had the nuchal—which like me had made its way into the suburbs in the four years between my pregnancies—and the numbers were good, not as good as they had been the first time but fine. The doctor who gave me the results suggested that I was in the clear and should go home and not worry.  I went home but I worried, this time I needed more than probability, I needed to know. So at 18 weeks (a little late), I had an amniocentesis, which uses a big (very big) needle to take some amniotic fluid which is then tested for chromosome abnormalities (like Down’s Syndrome), neural tube defects (like spina bifida), and genetic disorders (like cystic fibrosis).  

I have to admit that I am probably just the woman that Rick Santorum is trying to control.  You can’t know exactly how you would react to any situation before you are in it, but I know I would strongly consider terminating a pregnancy if I found out that the child would have severe mental or physical disabilities. My decision would be based on an assessment of my resources in terms of time, money, and emotional resilience. It would be based on perceived quality of life of the child—while some disabilities like Down’s Syndrome do not prevent children from leading long and productive lives, other abnormalities that can be found by these tests are likely to result in a child who has a short (or worse long) and painful life full of medical procedures. I wouldn’t want to do this to a child. The second time around, I would have also had to base my decision on my then-four-year-old daughter whose life would be affected by the health of her sibling and not just in the immediate term—a disabled sibling who outlived me could become her responsibility.

Not all women or couples faced with bad test results make or would make the same choice.  I have one friend who told me long before she got pregnant that she felt that she would make a good mother to a special needs child. She still got the nuchal, however, because she wanted to know in advance. Another friend got bad results after her nuchal—her chances went from 1 in 500 to 1 in under 100.  She chose not to have an amnio, however, because she knew that she and her husband would be uncomfortable terminating the pregnancy so the risk of the test seemed unnecessary.  However, as a result of that test, her pregnancy was labeled “high risk” and she was watched much more carefully until delivery. 

I can’t imagine having to make such a decision but I find the possibility of not being able to get these tests and make my own decision far more terrifying. 

Even Sarah Palin, who vehemently opposes abortion and has a son with Down’s Syndrome noted the value of these tests:

“I was grateful to have all those months to prepare. I can’t imagine the moms that are surprised at the end. I think they have it a lot harder.”

This is also a personal issue for Santorum.  His youngest child has Trisomy 18, a genetic condition in which a person has an extra copy of material from chromosome 18 (Down’s Syndrome is caused by a third copy of chromosome 21).  According to the National Institutes of Health, “half of infants with this condition do not survive beyond the first week of life. Some children have survived to the teenage years, but with serious medical and developmental problems.”

I feel for Santorum and his family as they will likely suffer the early death of this daughter.  But I respect his and his wife’s decision to carry any pregnancy to term based on their belief system. What I can’t respect is his desire to impose that belief system on all women. And I find this even harder to respect after he has spent the last few weeks yelling about how the government is trying to impose its pro-contraception views on the Catholic Church.  The hypocrisy seems so obvious.

Perhaps the biggest problem with Santorum’s views, however, is that like so many other things in this country they would inevitably be inequitably applied.  Even if he becomes President, Santorum cannot impose his will on all women or ban prenatal testing entirely. He’s not even suggesting that. What he’s suggesting is that insurance companies should not cover these tests as part of primary pre-natal care.

So once again, women who can afford their own insurance or their own medical care can continue to get nuchals and amnios and make their own decisions.  Of course, these are the same women who can afford birth control even if Santorum and his kind make the no-copay rule go away, and  therefore, not get pregnant in the first place.  And the same women who are in a better position to afford the medical procedures, physical therapy, occupational therapy, and special education that a special needs child would require. 

But these are not the women who would be most affected by Santorum’s rule because try as he may (and I trust that he will keep trying) Santorum still cannot control the reproductive rights of women who can afford to “pay” for them. 

No, once again, the attempts of Santorum and his far right brethren to impose their will on women can only be applied in such a way as to undoubtedly hurt poor women most of all.