Samantha, Loss and Ableism

[This post is the thirteenth in our series of Thinking in Action posts, the series being devoted initially at least to discussion of talks at the Cognitive Disability conference in NYC in September; this one takes up another concrete example concerning conference-themes, but not a conference talk. You can go to the Thinking in Action 10 pack, which links to the first 10 posts in the series; the posts run Tuesdays and Fridays, for the most part, and the series will wind up shortly. The posts immediately before this one concerned talks by Ian Hacking and Victoria McGeer on theory of mind and autism and Licia Carlson on moral authority].

I would like to raise some questions around the issue of whether Samantha is an ableist (for background, see the original post The son that Trent can never be …). While it is true that Samantha’s trip to China brought up feelings of loss about her son’s brain injury, she evidently feels guilty about those feelings of loss. What she said to Rob makes clear that she wants to value and appreciate her son the way he is. Indeed, her guilt about her sense of loss seems to stem precisely from the fact that she is committed to valuing her disabled son. In other words, her guilt seems to stem from anti-ableist commitments. For those who don’t want to go back to the original post, and the comments on it that have prompted this post, here’s the crucial bit of what she said about her brain-injured son Trent:

I found it rather hard to be around a baby boy who reminded me so much of Trent’s babyhood. It brought up a lot of feelings about Trent, and about the son that Trent can never be now. Maybe I still need to mourn the Trent that is now gone, but I feel guilty about mourning him, because he’s not dead. I guess I feel like if I mourn him it must mean that I don’t love and appreciate him enough the way he is now. I’m not quite sure what to do with all those feelings, but being around a baby boy sure brought them up. It’s going to be hard in some ways, I think, watching my nephew grow up to be a son I will not have now. What to do? . . . .

One might want to conclude that Samantha is an ableist from the bare fact of her sense of loss. Here, the reasoning would be that, if she weren’t an ableist, then she wouldn’t feel a sense of loss in the first place, so the very fact that she feels a sense of loss by itself shows that she does not properly value disabled people, or that she has prejudices against disabled people, including (now) her own son.

Several comparisons that other posts have made point in the same direction. Lots of parents have experienced various sorts of disappointment about their children if their children did not live up to what their parents expected—become a dentist, for instance, or be a boy child, or be heterosexual, or what have you. The implication seems to be that those parents’ sense of loss is based on their prejudices. The parents only feel a sense of loss because they are prejudiced in favor of dentists, they are sexist, or they are biased against homosexuals. The parents in these cases have not really lost anything except their own narrow-minded dreams based on class(?), gender or heterosexist biases. It’s only if someone is classist, sexist or prejudiced against homosexuality that he or she will feel a sense of loss if his or her child does not become a dentist, is a girl, or is homosexual.

It seems to me that the argument about whether Samantha is an ableist suggests that we need to interrogate the question of whether Samantha has lost anything. We need to ask: is there any reality behind Samantha’s sense of loss? If Samantha has lost something, if there is some reality behind her sense of loss, if she is in some sense justified in feeling a sense of loss, then maybe her sense of loss does not by itself show that she is an ableist.

Rob’s first question in his last post raises a similar point, I think. Everyone (even Samantha herself, since she evidently feels guilty about her sense of loss) seems to agree that Samantha should “get over” her feelings of loss. Some commentors have suggested that she will do so in time, or that having enjoyable experiences with her son will help her to do so. Rob poses the question: if “getting over it” is not easy, if “getting over it” is, as the expression goes, “easier said than done,” why is that? This question—why is that?—raises the possibility that the reason why “getting over it” is “easier said than done” is because Samantha really has lost something, or because there is a reality behind Samantha’s sense of loss. In other words, one possible explanation for why it’s not so easy for Samantha to “get over” her sense of loss is that she really has lost something.

One might argue that raising this question presupposes a medical model of disability: Samantha can only be said to have lost something if we think of disability in medical terms as something inherently bad about a person’s body. It’s only if we think of any residual impairments that Trent may have as intrinsically bad and inferior that we can conclude that Samantha has lost something. But let me give a different example to help shake up this idea. I am a white woman who married an African American man. When I was growing up, I traveled all around the United States, Canada—and, indeed, the world—with my parents, because of my father’s job. When my husband and I started to become serious about sharing our lives together, I experienced a sense of loss when I thought about what it would be like to travel with my own future husband. I don’t think this sense of loss made me a racist. My sense of loss was not grounded in a belief that my husband’s skin made him inherently bad or inferior, and it was actually true that I was going to lose something by marrying my husband. There was a reality behind my sense of loss. I was going to lose the white privilege or the privileges of white supremacy that my parents had enjoyed when I was a child. I would not be able to travel around the United States or the world with my husband and have the same sorts of experiences that my parents had had. (And, by the way, I turned out to be right—my husband and I have been hassled in various places to which we have traveled over the years because of his race (or our races?).) While the only reason I was going to lose something was because of racism in America and the world, it was still true that I was going to lose something. My sense of loss was grounded in social realities. It was an acknowledgement of those realities. To ask me to just “get over” that sense of loss without acknowledging the truth of the fact that I was losing something would be to deny something about the reality of being black (or married-black) in America.

Of course, one of the differences between my own experience and the experiences of black people is that black people don’t lose anything. You cannot lose what you never had. I lost something when I married black because I, as white, had enjoyed white privilege before I got married (I still enjoy white privilege, of course, when I am not with my husband or children). But that loss was still real. It was an important glimpse into something about the reality of being black in America. It might have been more troubling, indeed, if I hadn’t felt such a loss. To be oblivious to the loss might have meant that I was not learning anything about what it is like to be black in America.

So I come back to the question: has Samantha lost anything? Is there some reality that might justify Samantha’s sense of loss and might explain why she has (apparently to her own surprise) not found “getting over it” so easy? Here are some ideas I came up with that might suggest that that there is indeed some reality behind Samantha’s sense of loss:

(1) One thing Samantha may have lost is the possibility of having a certain sort of relationship with her son, depending on the severity of her son’s brain injury. I once met a woman whose daughter was left comatose after she had complications from pregnancy at the age of 18 (her daughter was now 24). While I never actually learned much about what sort of relationship the mother had with her daughter before her daughter became comatose, let’s assume that she had a reasonably good relationship with her daughter. If that were the case, would it be fair to say that this mother was being ableist if she missed—let me use that word, since, as Rob points out, Samantha herself seems to be uncomfortable with talk about “mourning”—the sort of relationship she used to have with her daughter—listening to her daughter’s stories, perhaps, having a certain sort of experience with her daughter if they went shopping together, or what have you? Her daughter is now almost completely comatose. She has “sleep/wake” cycles, but she is otherwise non-responsive. Does the fact that the mother does not have—indeed can never again have—the same sort of relationship with her daughter that (we’re assuming) she had before her daughter’s pregnancy constitute a loss? She can find joy in the new relationship that she has with her daughter—and so can Samantha with Trent—but this joy will grow out of having a different sort of relationship with her daughter than she had before.

Suppose the mother did feel a sense of loss—and I did not know her well enough to be able to ask her such questions. Would the mother’s sense of loss presuppose that the relationship she now has with her daughter is worse than (inferior to) the one she had before? Is there an implicit judgment that the new relationship is inferior that might justify our accusing this mother being ableist if she misses the sort of relationship she had with her daughter before the pregnancy? I don’t think so. It may even be possible to feel bad about a good thing, or to feel a sense of loss over a good thing. Think of the sense of loss that a parent might feel when his or her child goes off to college in another city or town. If we assume (for the sake of argument) that the parent had a reasonably good relationship with the child before the child went to college, then the parent will lose something when the child goes to college. Before the child went to college, the parent got to see the child nearly every day, for instance. If they had a reasonably good relationship with one another, then the child probably shared his or her stories of daily life with the parent. Once the child goes to college, chances are that the child will not do that anymore. It seems unlikely that the parent will see or speak to the child every day, and there will be no more impromptu conversations four times per week over the bowl of Ramen noodles or the snack that the child fixes for him- or herself after school. Here, the fact that the child has gone on to college is probably a positive thing, but the parent still has a reason, it seems to me, to feel a sense of loss. While it is true that the parent needs to “get over” the sense of loss, there is a reality behind the sense of loss that explains why getting over it is not so easy.

Rob’s comparison between Samantha’s situation and the death of a loved one in an earlier post makes a similar observation. Even if you think that your loved one goes to a better place after death, surely you are still going to miss the relationship you had with that person on this earth. There is a real loss of relationship that makes sense of the sense of loss.

Now it’s true that our relationships with our children always change over time, but perhaps there can in some cases be a justified sense of loss after certain sorts of changes. A mother who really enjoys the sort of relationship she had with her children when they were babies might genuinely miss having that sort of relationship in her life when her children grow up, for instance, even though growing up is not an intrinsically bad thing. (By the way, this sort of loss of relationship would not seem to be a part of some of the other examples raised by commentors. The fact that a child does not grow up to become a dentist does not seem to involve the loss of having a certain sort of relationship with that child. The fact that the child grows up changes the relationship, but the fact that the child does not become a dentist does not seem to change the relationship.)

(2) Samantha may have lost what is sometimes referred to as “bodily capital” or bodily prestige. This loss is connected to social conditions: our society values certain sorts of bodies (male, white, or abled ones, for instance) over certain other sorts of bodies (female, black or disabled ones). Now that Samantha has a disabled child, she has lost the bodily capital that attended having an able-bodied child—especially if her son is visibly disabled now. She may be justified in feeling a sense of loss over that loss of bodily capital—in the same way that I was justified in feeling a sense of loss over the fact that I would not be able to travel with my husband and have the same sorts of experiences that my parents had had. There is a social reality that attends disabled people and their families in an ableist society that Samantha is now subject to that she was not subject to before. She has lost something: able-bodied privilege.

Let me tell another story that illustrates a similar point. Right after my son was born, when I was still in the hospital, I heard one of the nurses talking to my hospital roommate. The nurse told my roommate that her baby was the most beautiful baby on the unit at the time. “She’s the only blond baby on the ward,” the nurse said. Now, for reasons I’ve explained above, there was very little chance that I was going to have a blond baby. The nurse’s comment made very clear that my son—who had head of black hair—did not have the same bodily capital that my roommate’s baby had. I don’t think I really felt a sense of loss on this occasion—I think I chuckled to myself, actually. By then, perhaps, I was more used to the idea of having reduced family-bodily capital and being unable to travel with my husband and have the same experiences that my parents had had, but the nurse’s comment still did highlight what I had lost. I don’t know that I feel a sense of loss any more—I’m probably more angry than anything. But I don’t want to “get over” that anger either. I am angry at racism because of what it does to us, including the losses and disadvantages that attend being black or married-black in America.

(3) Samantha may also have lost a certain ease of life. Some of this loss has its roots in the social as well. Having a black child, for instance, can be more work than having a white child in a racist society. One of the privileges of being the parent of a white child in America is that you don’t have to fight the many stereotypes that attend blackness. My son was still in daycare the first time I had to go in and complain about the way in which he was being stereotyped because of his race. One day we got a call from the daycare telling us we had to pick our son up right away because he was being thrown out of the daycare for the rest of the day. When I went in to discuss the matter with staff, I was told that he was the “gang leader” who, with another boy, was going around playing “guns,” and when he was disciplined for the behavior, he behaved so badly that he had to be wrestled down by five employees. My first thought was, how did things get so out of hand that it took five people to hold him down? But when my son was allowed to return to the daycare and I observed him interacting with the other boy behind one-way glass, I saw the boys take turns encouraging each other to engage in the “gun” games. Why was my son being stereotyped as the “gang leader”? I had to call up the director of the center and complain about the racial stereotypes being used to vilify my son as the “gang leader” in a relationship that was clearly two-way. (By the way, the other boy was white. Indeed, my son was the only black boy at the daycare.)

Parents of disabled children face similar fights and struggles. In some cases they have to fight for basic services for their children—sometimes even for school. These barriers are socially constructed, but they create a reality for the parents of disabled children that a parent might experience as a “loss” if a parent goes from having an able-bodied child to having a disabled child, in the way that Samantha did.

Finally, given the way our ableist world is structured, there are other ways in which Samantha may have lost an ease of life. It is more difficult to get in and out of a car if there is a wheelchair involved, for instance. I remember being so happy when I didn’t have to drag around the diaper bag and all that baby gear whenever I went out, and I was really happy when I could finally give up car seats. For me, dragging around diaper bags and car seats was a pain in the neck. These “burdens” are socially constituted—if we didn’t use diapers or use cars and so on, I wouldn’t have had to drag that equipment around. Nevertheless, given our social world, it was easier to go out when the children got older. I remember that I did feel a certain sense of “loss” of ease of life when I had to start dragging all that equipment around.

Some postmodernist disability studies scholars have urged us to take seriously the idea that there may be intrinsic disadvantages to having certain sorts of bodies, disadvantages that play a role in making life harder. If they are right, then there might be additional ways in which Samantha’s life may have become harder after her son’s brain injury than it was before—ways that she might experience as a loss of an ease of life. But even if we don’t think there are intrinsic disadvantages to having certain sorts of disabled bodies, I think there are socially constituted disadvantages that explain how Samantha might feel a sense of loss without necessarily being ableist.