My experience with German Measles

My experience with German Measles

I was scanning the news yesterday and saw this item:

The largest U.S. outbreak of measles to occur in 15 years — affecting 214 children so far

I also know that the CDC just released a report expressing their concern about a large outbreak of measles in Europe.  The CDC identified several barriers to defeating measles (rubeola):

“Principal factors contributing to decreased demand for measles vaccination in EUR include lack of knowledge of the seriousness of the disease, resulting in a reluctance to be vaccinated; skepticism about the benefits of vaccination; fear of adverse effects from being vaccinated; and limited health-care access for some underserved populations” [emphasis mine]

The one thing I can talk about is the seriousness of the disease. And given that humans are known to respond more strongly to stories than statistics, maybe this will help.

This is a photo of my mom (who is 5’2″), and my aunt Jan.  When this photo was taken, I think my aunt was around 35.  You will notice a couple things immediately–she’s very short and she has huge thick glasses on. What you can’t see is that she is also deaf, and does not have the maturity of an average adult her age.

My grandmother was pregnant with my aunt long before the vaccine for measles was common. My aunt was born before 1963, the year the vaccine was approved in the US. (I was born before 1963 too, BTW. This story could easily be about me.)   My aunt was born with poor vision, little hearing, physical stunting, and what at the time was called “mental retardation.”  Classic congenital rubella (German Measles–this is the R in the MMR vaccine: Measles-Mumps-Rubella).

It was a tough challenge for my grandmother and my grandfather, but I think especially for my dad. He had a sister just 2 years younger than him, but oh so very different, in the same school.  Because he’s a Lutheran from the Upper Peninsula of Michigan, he has never talked about this. (Frankly, he never talks about anything personal–that “Norweigan Bachelor Farmer” thing is based in truth.)

My dad is brilliant. He’s in his 80′s now, and still serves as an engineering consultant all over the world. Ever heard of ISO 9000? Yeah. My dad helped write that standard.  (Something I only found out a few years ago.  Seriously. He’s not a talker.)  I know that he helped his sister finish high school. I know that when I try to get him to talk about her, he loved her and found her immensely frustrating.

I can only really tell you what I thought, growing up with a disabled aunt.  It was really frustrating, because I couldn’t communicate with her. At all.  And because her hearing was bad (eventually she became completely deaf and blind), she tended to shout a lot, which was hard for me to understand as a kid.  It was scary.  As I got older, I understood what was going on better, but Jan had a short attention span–so she’d look away in the middle of the sentence, and then fill in the gaps on her own. This…often led to real shouting.

Jan lived in a special “school” from which we had to go retrieve her for the holidays.  I don’t know what they did there, although she was a master craftswoman. She could knit ANYTHING. If you could get her to focus, she could create amazing stuff.  She also was in and out of the hospital for most of her life, for liver problems, kidney problems, and eye problems.  My grandfather was a teacher, and I have no idea how they paid for all of this.

It’s clear to me, looking back, that the remnants of a brilliant mind were in there. What would Aunt Jan have been able to do if her mother hadn’t been infected by German measles? What amazing bit of knowledge would she have contributed to the world, like her brother the engineer?

I don’t know. But I do know there was a lot of emotional pain for my family, and literal pain for Aunt Jan.

It doesn’t have to be that way.   

We now have the ability to prevent both kinds of measles, polio, and many other diseases that my parents were terrified about when I was a kid. I remember my mom crying with relief when I got my polio vaccination at a public health clinic. At last, her kid was safe.  I wouldn’t end up in an iron lung.

For those of us that are old enough to remember having classmates with leg braces, it is difficult to understand why anyone would NOT want to get a vaccination.  We have seen lives destroyed and stunted by diseases that are now, thanks to science, able to be prevented. [edited to add: In trying to convey my passion whilst writing this, I was unclear. I am talking about folks that died in terms of "lives destroyed", not people who are in leg braces.]

The History of Vaccines website  is a great resource for folks that are trying to convince those reluctant to vaccinate, or just curious about the history of vaccines.  You can see a doctor that treated many cases of congenital rubella syndrome in the 1960′s talk about his experiences in this video.  

I can’t tell you how disappointed I am that I am too old for the HPV vaccine.  I remember the pain of a good college friend discovering he had HPV. He was devastated. As an ethical dude, he knew he had to tell his dates that if they slept with him, they risked catching a potentially disfiguring–or deadly–disease.

You kids get off my lawn and go get vaccinated, damn it!

What is YOUR story about vaccination?

The Afternoon Inquisition (or AI) is a question posed to you, the Skepchick community. Look for it to appear Tuesdays, Thursdays, Saturdays, and Sundays at 3pm ET.

Bug_girl has a PhD in Entomology, and is a pointy-headed former academic living in Ohio. She is obsessed with insects, but otherwise perfectly normal. Really! If you want a daily stream of cool info about bugs, follow her Facebook page or find her on Twitter.


  1. As a child I was vaccinated against measles, but as this was before the widespread use of the MMR vaccine over here, not against mumps or rubella.

    Some years ago there was a mumps outbreak in a region I had to travel to, so I thought that it would be a great idea to get vaccinated prior to that.

    My inital: “Why MMR? I’m already vaccinated against measles, and as a man rubella is not really an issue” was quickly axed by the doctor when she pointed out that I could still carry rubella and thereby endanger pregnant women who weren’t vaccinated. Reading stories like this makes me glad that I had a doctor who raised my consciousness in that respect.

    One small point though — rubella (aka German measles), despite the name, is not actually related to measles. While the former can cause CRS in unborn children, which leads to the tragic effects above, it is otherwise a relatively mild disease in comparison. The latter is a very literal killer, making the CDC warning that much more chilling.

    Sitting in Germany, I tend to get rather irate (and vocal) when people start talking about skipping vaccination and sending their kids to measle parties instead. Pointing out that we are still seeing 5-10 children dying from measles every year in Germany, usually helps with the arguement…

  2. Just wanted to weigh in that rubella is not measles, but skipping the MMR will lead to spikes in everything. My mom’s congenital rubella is not as severe as your aunt’s but she is deaf.

    • Based on your comments, I’ve added the word “german” before measles to make things clearer.

      The problem for me was that I don’t think most people know what rubella and rubeola are–so I’m using the common name.

  3. I was born in 1982, and although I don’t have congenital rubella it was a close call. When my mother was pregnant there was a woman on the same floor in their apartment building that had German measles.

  4. It’s a shame that many of Aunt Jan’s potentially brilliant contributions likely went quashed and unfostered by overarching cultural attitudes about Disabled people and the “usefulness” of thier minds. Many of such ideologies are alive and kicking, and likely doing comparable amounts of damage as the “Disabilities” themselves.

    Sometimes Persons with Disabilities (PWDs) contributions are delegitemized, when it would have been useful to instead problemetize the inaccessability created by ableist cultural attitudes (institutionalization, and limited educational access for example.)I’m Deaf, and my girlfriend wears leg braces, stands 4’7″, and walks with forearm canes (similar to the polio sufferers described in the article.) When we go walking along the fishing docks, strangers frequently stop us to tell her how “brave” they think she is for EXISTING IN PUBLIC LIKE THAT OMG! The woman has 2 PhDs for crud’s sake, but judging from the stranger’s “kid glove” approach, it’s probable that they are drawing conclusions about her mind’s capabilities based on thier ussumptions about the usefullness of her legs. I mean, there are loads of reasons she is brave, but the least of them are her legs. She likes to point out that “It’s those goddamned stairs that disable me, not my legs!”

    • Wren–you are right, for most of my Aunt’s life, the “proper” thing to do with disabled folks was to keep them housed in an institution. She did learn to sign, but neither her mom nor my dad did. (!!)

      Unfortunately, even if Aunt Jan had gotten the educational support she needed, I don’t think she would ever have been able to live independently. I would estimate her mental age/maturity level at that of a 10 year old.

      Towards the end of her life, when she kept ending up in the hospital over and over, it was really heartbreaking, since she didn’t understand why she was being “punished.”

    • @Wren Can I just say I think your girlfriend is badass, not for any relation to her “bravery” for living with a disability, but because having 2 PhDs is AMAZING?!

      • Yeah, she’s a total badass. She grew up in foster care and never even graduated highschool because the foster system stuck her in classes for the “developmentally delayed”, which is sort of laughable now. She wears these awesome psychadelic ballgowns (that of course drag way behind her, at 4’7″) and whenever we go out, she insists on taking “the fairy route”…which means stomping through the bushes to get where we are going. When we notice people staring (I’m kind of hard to miss too, with my dorky science tattoos and knee-length dreads) she makes sure they hear her say “that’s good! People need a little productive disruption to their day! Enjoy!”

  5. Oh how heartbreaking the hospital stays must have been.

    I’m always very interested in dissecting the cultural positions that PWDs find themselves in when (normatively bodied) people assign ability levels to them (for example, being “able to live independantly” or estimating an aproximate age of “muturity”)

    A really fantastic scholar on this subject is Eli Clare, in particular his book “Exile and Pride: Disability, Queerness, and Liberation.” A second fantastic resource that I feel broadens the scope of was it means to be Disabled comes from this short video:

    • I suppose I am superficially “normatively bodied”, but as an FYI I do identify as a disabled person because of my epilepsy and various physical limitations.

      I understand what you are saying in terms of how we use language to describe people. That is one of the reasons I have quote marks around “mentally retarded” in the post, since that term is problematic for all sorts of reasons, even though it’s historically accurate in terms of her story.

      You didn’t spend 35 years with this person like I did.
      Please don’t jump to conclusions.

      • I think Wren is right to point this out. Yes, you did put quotes around mentally retarded to indicate a shift in thinking about disability; however, you still described the lives of people who wear leg braces as “destroyed.” That is just as disempowering as the implications of “mental retardation.”

        I didn’t see Wren saying you were wrong about your Aunt and your own experiences so much as that there are ways to discuss the importance of vaccination and the impact of anti-vaxx positions without engaging in the sorts of discourses that strip people with disabilities of agency and power.

        • That is actually crappy writing on my part–I was thinking about people that died from polio/measles.

          • Edited the post to indicate more clearly what I was thinking. Now I see why you were upset!

            This was a post that I have had half written for…years. It’s not easy to talk about, and in trying to convey that, I was unclear. I knew what I meant….in my head. That doesn’t always make it onto the screen.

            I apologize.

          • Ah, I see now. Thank you for the clarification! =)

  6. I’m not jumping to conclusions about Aunt Jan, or your lived experience as her niece, or your identity as a Person with a Disability. What I am talking about though, is how to have the difficult discussion about the necessity of disease prevention, without disempowering non-normatively bodied people.

    • I don’t want to disempower non-normatively bodied people either. But I do not know of a way to tell this story to a bunch of strangers on the internet without describing her physically.
      Or talking about how difficult it was to communicate with her, or get her to take care of her physical needs.
      Or talking about how very painful it was for our family, especially me as a kid, to deal with this.

      (An aside: The amazing thing to me, in retrospect, was that she did learn some sign language, but no one else in her family did.
      Why?? Why in the world would you not want to communicate with your kid? That more than anything else speaks to the concept of “damaged babies” that the doctor brought up. I find that so puzzling, since my grandparents did care about her enough to care for her (within the standards of the time) during her life. Was it that she was “damaged goods” within their minds too? I don’t know. )

      But my saying “this person suffered, but we can prevent that now with a vaccine” doesn’t imply “other people with disabilities are less than.”

      • I agree that “saying ‘this person suffered, but we can prevent that now with a vaccine’ doesn’t imply ‘other people with disabilities are less than.’” I do wonder if the story could have been shared without drawing on the enormous disparity (ex:”oh so very different sister”) between able bodied family members and Aunt Jan in a way that positioned Aunt Jan and her Disability as such a burden, instead of problematizing the cultural attitudes that created social spaces in which she and your family were not valued and accomodated.

  7. I ended up with pertussis when I was a kid, maybe 4. I also have asthma and I was quite sick. I don’t remember much about it, I spent the time I wasn’t coughing by sleeping. I just remember sitting up off the couch and feeling the bottom of my lungs lifting several inches in order to push out all the air in my body. It made this horrible sound, I remember thinking “So that’s why they call it whooping cough.”, I couldn’t believe that sound was coming out of me. I got better eventually, but I had a lot of lung problems throughout childhood.

  8. Wren is really not alone here. I do not have the perspective of a disabled person, but I was still struck by the language here. Yes, Rubella has tragic consequences, and yes, the congenital version can and should be prevented, but I would never want someone talking about me like this.

    • Like what, exactly? Where in this post does bug in any way diminish her aunt as a person? She tells us of the pain suffered both by Jan and her family in a heartfelt, sensitive way. If Jan were alive and capable of understanding the situation fully, do you not think that she would agree that rubella had a rather horrible impact on her life?

      This is an incredibly difficult, sensitive topic, I know. I think bug handled it amazingly. I also have personal experience with disability in my family and I don’t think I would be able to talk about it without accidentally starting a nuclear internet war.

      • Nuclear war? Are you serious? I doubt anyone is taking issue with Bug’s personal narrative, or her family’s struggle. I think what is on the chopping block here is is the medical model of Disability. That is, the culturally constructed determinations about what constitutes “real” thought, “real” communication, “real” personhood.

        To me, a central tenet of Skepticism is being able to have this kind of constant dialogue about which conclusions hold water when subjected to inclusive and rational observations, and which ones are rooted in what we think we already know. A.M. Baggs is so articulate about the harm of medical models of Disability. She is an Autistic “non-communicative” woman who is also a brilliant academic. I would really ecourage everyone to watch this short video. It’s 8 minutes of your life, and just as it is important to account for lived experiences like Bug’s, it is only fair to account also for the lived experience of others.

        • The “nuclear war” comment was not meant to imply that I would actively seek to flame those with opinions differing from mine, but rather that I find this topic very hard to talk about without getting personal and very emotional. And when it gets personal and emotional, it’s hard to express oneself in a way that doesn’t offend other people, for whatever reason.

          While I appreciate the “what’s real thought?” perspective, I don’t really think anyone here has suggested mentally disabled people (and I apologise if I’m using offensive terminology, I’m not up to date on how I ought to communicate on this issue!) don’t have “real” thoughts. They’re perhaps different, outside the norm if you will, but no less real, and for scientifically minded people, whether you’re “normal” or not has no bearing on your worth as a person (because all the word “normal” describes is your position on a bell curve). And I’m not certain how this question relates to bug’s point about the unnecessary pain congenital rubella can cause.

          The video is beautiful, but I must admit it confuses me that you described her as “non-communicative”. Does that word only apply to verbal communication? Again, not up to date on terminology!

          • Because Amanda Baggs doesn’t communicate in the ways that language pathologists authenicate as having command of (a particular kind of) language, people like her are routinely classified as having “non-communicative” or “non-verbal” criteria. I put these word in quotation marks in order to refer to her (mistaken) medical diagnosis, and also to challenge it. Clearly she is both verbal and communicative. In fact, she is a really really good communicator! In my comments, I am wishing to open a dialogue about the often abstract criteria for the pathologization of PWDs. For example, Amanda’s failure to speak is described as a deficit, while other people’s failure to learn her language is seen as natural and acceptable.

          • I understand what you mean about emotionally charged subject matter making it ” hard to express oneself in a way that doesn’t offend other people”, however, does that mean that working towards inclusive, non-oppressive discourse should be avoided?

            To me, one of the beautiful things about the skeptic communities is that many of us deeply value materially engaging with emotionally challenging material in ways that pragmatically explore our many different experiences of the same subject.

          • I absolutely don’t think the subject should be avoided. Just that those of us who know we have trouble staying rational and calm about certain topics do well to bow out of the discussion before aforementioned nuclear war breaks out. ;)

          • That’s an interesting perspective. I think ” those of us who know we have trouble staying rational and calm” might do well to expose and explore the weak spots in our logic rather than “bowing out of the discussion.”

          • When emotions are high, I think walking away is a good thing.
            I certainly can’t think clearly when I’m upset, much less logically or rationally.

            That doesn’t close the door to coming back later and trying to engage in further dialog.

          • What bug said. Apparently even though I am doing my very best to stay calm, I’m completely failing at communicating my points clearly right now. Basically what I’m saying is that my way of dealing with conflict is to NOT deal with it when I’m too upset to do so properly. And that I think the world would be a lot better off if others followed my example.

          • We are taking about the internet here. Everyone is welcome to “walk away” from the conversation, and return at thier liesure, which is a different thing than “bowing out of the discussion.” Nobody here is telling you your “way of dealing with conflict is to NOT deal with it when I’m too upset” is wrong or unwelcome. As for your suggestiong that “the world would be a lot better off if others followed my example”, While I’m not sure you are in a position to make that call, I respect your decision to engage/disengage at will. But that’s not you were doing. You admittadly engaged ” even though [you did your] very best to stay calm.”

          • I have always found it wise to follow Mark Twain’s advice in these situations: “When angry, count to ten. When very angry, swear.”

            Not really, walking away (figuratively) for a while can help a lot.

            I don’t think Bug meant any disrespect to any intellectually challenged people (is that the currently accepted term), and I don’t think anyone else meant to disrespect the challenges and difficulties faced by a family which had to support a family member with a serious disability.

            Discussing inadvertent matters of tone diverts attention from the essential message of Bug’s post, the continuing importance of vaccines. However, fixing the issues to fine-tune her message helps focus on that message. I hope we can do that without descending into a flame war. After all, I think we are all on the same side here.

            As for other issues, such as how our society treats intellectually challenged (“mentally retarded” people) and other disabilities, or why we haven’t in the past, and don’t currently treat such problems as health issues for which treatment is a basic human right, but instead force individuals and family members to assume the entire financial and emotional burden, these seem to me appropriate topics for an Afternoon Inquisition, and I’ve never known Skepchick to shy away from such discussions. There is no need for a thread hijack to get otherwise unexplored issues to the fore.

            tl;dr It’s fine to want to clarify post and improve its tone, but a full discussion of issues faced by disabled people or the American health care system deserve their own posts and comment threads.

          • Buzz- I’m not sure anyone hijacked any thread, or started any flame war. I assumed that one of the reasons people are allowed to leave comments on blog posts is to explore the relatedness of specific topics as they can be applied to broader understandings of the world: ex. vaccine-preventable Disabilities, and the medical model of Disability.

            You wrote: “[our society doesn't] currently treat such problems ["mental retardation"] as health issues for which treatment is a basic human right”..I think that illustrates my point. What Disabilities are modeled as a “problem”, by whom, and why? I’m not sure using words like “problem” to describe what, for many people is a deeply prideful identity, is really fair. Many times, the real problem is not a person’s body or mind, but rather that our culture (our buildings, our institutions, our economy) is build to allow access to a very particular kind of person….usually athletic, male, and white. When the bodies and minds of some people are excluded by a systematic process of opression, I think it would be more helpful to problematize the culture that excluded them instead of thier bodies/minds.

          • Buzz,

            No one said Bug *meant* any disrespect–and that’s kind of the point. It’s about unproblematic assumptions about disability. And, as Wren has pointed out, your comment is further illustration of these assumptions.

            I find it quite troublesome to say that intention is what is most important–this is absolutely untrue. People can engage in all sorts of discourses of oppression without realizing that they are doing it, and unless it is pointed out, they will continue to do so.

            I would recommend using the term people with disabilities (as Wren has pointed out previously), and not “intellectually challenged.” And asking if it is the currently accepted term after Wren has already pointed out the terms that people use seems disingenuous.

            I think Wren did a good job pointing out the problematic language you use, but I would go a step further and using words like “burden” or assuming that disabilities are “health issues” is exactly the problem. How do you think that makes PWDs feel, to hear that they are a “burden”? It’s quite insensitive. And a discussion of disability is absolutely relevant to this post because the entire story Bug Girl provided is based on understandings of and experiences with disability.

            The problem I have is that it is just too easy to slip into medical models of disability and use people with disabilities as dehumanized warning signs to emotionally manipulate people into getting vaccinated. Let me say clearly that I do *NOT* believe that that is what Bug Girl is doing at all here, but commenters could easily take it down that path, and I think it is important to point out the sensitivity necessary in discussing the topic of vaccinations from this particular perspective.

          • Reply depth exceeded, so I’m really replying to Wren and Will…

            I obviously have a lot to learn about this subject. However I refuse to give up my right to whine about having a separate thread/blog/post/whatever to discuss it in. :-)

  9. Your article struck a chord with me. I too had an aunt that was struck by a vaccine preventable illness – Polio. At the time (the 1930′s), there was no vaccine. Children would be sequestered in their homes whenever news spread of a polio outbreak. Community pools would be closed. My aunt developed encephalitis and subsequently partial paralysis, visual impairment and mental impairment as well as loss of impulse control. My mother (her younger sister) recalls being physically attacked by her on several occasions. Due to her mental instability and multiple medical problems, the entire family cared for her. During a time when disability was mocked or shunned, my grandparents sequestered her in their home for most of her adult life. She lived a shortened and painful life due complications from polio. As a pediatrician, it frustrates me to no end to have parents refuse for their children what my grandmother would have crawled over broken glass to obtain. Thank you for putting into words what has been too painful for me to write about or talk about.

  10. In Australia… can’t open a newspaper without reading about a new outbreak. Vaccination is at a high level but the been decreasing year upon year. Now we have a measles outbreak. Last year hooping cough. In the northern territories, tuberculosis. Polio makes a return in Pakistan and I guess we shall see it here soon. We have a small population but we are well traveled.
    We have no need to ask for whom the bell tolls.
    It’s a pity we can’t vaccinate against ignorance.

  11. the History of Vaccines site appears to be down. I really need it too/ I need help in the heartbreaking discussion I’m having with my daughter-in-law who has decided to stop vaccinating our grandchildren.

  12. I don’t believe it is able-ist to simply articulate the ways in which disability may have negatively impacted an individual’s life. We can have a rational, sensitive, respectful discourse about disability and disease without having ignore the ways in which they can cause genuine difficulties and challenges to one’s life, or be a detriment to well-being, or cause suffering, etc. There’s a big difference between saying “living with a disability can be a very difficult struggle” and saying “people with disabilities are lesser than able-bodied individuals, and cannot find fulfillment in life”.

    To make a bit of a comparison, that might be a bit clunky:

    A lot of people in the LGBT community are campaigning to have Gender Identity Disorder removed from the DSM. I think this is premature, and potentially a very serious mistake. GID is indeed a disorder in so far as that it causes genuine distress to the patient, can be severely detrimental to well-being and quality of life, and even poses risks to one’s health and safety (such as suicide). It may be inaccurate to define it as a psychological/psychiatric disorder, rather than a neurological/physical one (or a disorder of the relationship between neurology and anatomy), but until there is a definitive set of diagnostic criteria in another field, it would be very dangerous to remove the diagnostic criteria from the DSM. Dangerous for those of us who cannot afford to simply pay for hormones or surgeries. Is it cissexist of me to acknowledge the fact that GID causes severe problems for those who live with it, and requires medical treatment and intervention? I believe instead that it is cissexist to suggest that said treatment is merely cosmetic or something a patient simply “wants” or “chooses” rather than needs…I believe it is cissexist for doctors to refuse to treat it because they don’t regard it as a legitimate illness… I believe it is cissexist for insurance companies to refuse to cover it because it’s “cosmetic” and “unnecessary”… I believe it’s cissexist to ignore the very real distress it causes and suggest we should simply “accept ourselves” and “get over it” because it’s “no big deal”.

    Do you see how this relates?

    Another analogy might be the naive “colour-blindness” arguments. “I don’t see black and white, I just see people”… “affirmative action is ‘reverse racism’, we should simply judge people by their merit”… these kinds of arguments, while sensible on the surface, ignore the very real social inequities that fall along the lines of race.

    My point being: to have a meaningful dialogue about things like disability, gender or race, we need to be willing and able to discuss the challenges that people face, and the suffering that can occur. Turning a blind eye to that and saying “we’re all equal” may in *theory* be the most fair way to approach these things, but the truth is that the experiences, opportunities and challenges we face AREN’T all equal, and it is entirely reasonable to discuss them. I feel it would be more detrimental to the dialogue surrounding disability to discourage discussion of the negative impact it may have on an individual’s life than to allow that to be a part of the conversation.

    • As a tangent: I’m not convinced that GID is what causes distress in the patient so much as the way society is structured and the way people interact with trans folks that causes distress (this is known as idioms of distress in the social sciences). I could be wrong and I am open to evidence that would support a biomedical model of GID (I’m not super familiar with the literature specific to GID).

      Anyway, I really do not think Wren is saying to “turn a blind eye” to the experiences discussed here. In fact, it seems to me that she’s saying we should also be sensitive to *other* experiences of disability by people who may feel dehumanized or disempowered. Based on my understanding of Wren’s posts (with which I agree completely), she’s saying that the suffering that comes with things like disability is not *necessarily* physical–that it is the stigma and exclusion by society that often causes the bulk of the suffering of PWDs. In other words, we are willing to discuss the challenges people face, but we are not doing it from the assumption that those challenges are medically or biologically determined (i.e., we do not subscribe to a medical model of disability in which PWD’s challenges are health related and not socially determined).

      I totally agree with you that these are important topics to discuss, and I hope we can continue to discuss them critically and sensitively as all skeptically minded people should. ;)

      • I think the distress goes well beyond just the social treatment of trans folk. Remember the gender identity / gender expression distinction. All the social acceptance in the world can’t make a woman feel comfortable with having facial hair, a flat chest, testes pumping her full of testosterone, a penis, body hair, ruddy skin, and that acidy-sweat smell. And no matter how enlightened a culture is, a man is going to go right on feeling creeped out and disgusted with having breasts, a vagina, soft skin, feminine fat distribution, a menstruation cycle and a head swimming with estrogen.

        Homosexuality was rightly removed from the DSM, because any psychological distress or detriment to well-being associated with it was a result of socio-cultural context and the patient’s beliefs about homosexuality. But with GID, the distress and detriment to well-being and quality of life stem directly from the disorder, and the mismatched relationship between internal body perception and external anatomy, and would occur regardless of socio-cultural context or the patient’s beliefs.

        And I think this can actually apply to the issue at hand:

        Although how society is structured, and how people with disabilities are othered, disregarded, disrespected, and not accommodated, certainly worsens the negative aspects of living with a disability, and the struggle it entails, it is not SOLELY responsible for those negative aspects. Many disabilities would still cause genuine suffering, and a genuine detriment to quality of life, regardless of how accepting and accommodating a culture may be. Just like with GID.

        • Natalie: You wrote “All the social acceptance in the world can’t make a woman feel comfortable with having facial hair, a flat chest, testes pumping her full of testosterone, a penis, body hair, ruddy skin, and that acidy-sweat smell. And no matter how enlightened a culture is, a man is going to go right on feeling creeped out and disgusted with having breasts, a vagina, soft skin, feminine fat distribution, a menstruation cycle and a head swimming with estrogen.”

          While this certainly accounts for a percentage of Trans people, I wouldn’t go so far as to use that percentage as the absent referent for the Trans experience.

          To me, it sounds like the “born this way” argument. When someone asks the question “were you born this way?” it’s hard for me to imagine that they have my liberation at the forefront of the inquiry. I don’t think that question *can* be used to liberate anyone. What if the answer is “no” (as it is for many Queer people?)Does that make them icky or fakers for making a choice to be something that is routinely pathologized? The search for the “gay gene” or the “Trans disorder” sound eerily to me like eugenics. Clearly, the normalized model here is cisgender and heterosexuality. The search is on for the “deviant.” Nobody is searching for the “heterosexuality gene” or the “homophobic gene.” Being heterosexual, and to a large degree homophobic, are understood as the “natural” and biologically determined stated of personhood.

          • I don’t see what this has to do with “Born This Way” at all, unless you were to assume a strictly social-constructivist position (which I feel is not supported by the evidence). My point is only about distress stemming directly from discomfort with the body rather than from social mistreatment. And I’m absolutely not implying anything about anyone being “fake”.

            Also, yes, I am aware that not ALL trans women experience ALL forms of dysphoria. I’m completely aware of the existence of non-op people and supportive of their legitimacy as their identified sex. The fact that dysphoria can occur in different ways doesn’t discount the fact that dysphoria occurs.

            Discomfort with one’s physical sex and gendered aspects of one’s body is the fundamental keystone around which transsexuality is defined. Transgenderism encompasses a variety of things, but transsexuality, specifically, regards feelings of alienation from the body.

            This is an example of how certain conditions can directly have a negative impact on one’s quality of life, regardless of social acceptance.

        • Natalie said: “But with GID, the distress and detriment to well-being and quality of life stem directly from the disorder, and the mismatched relationship between internal body perception and external anatomy, and would occur regardless of socio-cultural context or the patient’s beliefs.”

          I’m not sure how you can make that claim. From the literature I’ve read, there are very clear examples of how gender identity is experienced and valued differently cross-culturally (David Valentine’s Imagining Transgender comes to mind). To say that people experience GID regardless of when or what society they in live is not supported by the literature that I’ve read. Again, I’m more than willing to be pointed in the direction of studies demonstrating a cross-cultural universal presence of GID or that it is not culturally mediated in some way.

          On disability: I really do not think that Wren or I are trying to say that culture is SOLELY the cause of disability. What we are advocating is a social model of disability, which says that there are structural barriers and stigmas produced by society that are the MAIN component of disability. Under this model, there is a difference between disability and individual functional limitations (this is what a lot of people base disability on, but the limitations are not necessarily disabilities in and of themselves). This is the major difference between a medical model of disability (“impairments” = disability) and a social model of disability (separation of impairments of individuals from the disabling effects of a society built by able-bodied people).

          I think this is where there might be a miscomm going on. When Wren and I are talking about disability, we are not referring to individual functional limitations but to the structures that sometimes complicate individual functional limitations. So, in the case of Wren’s girlfriend, her individual functional limitation is only a disability because of the way society is structured and treats her. This says nothing about the physical realities of her life, only that she is “dis-able-bodied” (disabled) by society.

          The reason I vehemently disagree with those who claim this discussion is irrelevant is because when we frame discussions around disability there are conflicting understandings of what this means. Those who know about the disability rights movement and are familiar with the literature on the social model of disability and those who have visible disabilities and deal with the stigma of that on a daily basis are extremely sensitive to topics that use a medical model of disability (understood as “disability”) to frame discussions about topics that may or may not relate to individual functional impairment.

          I hope this makes sense and helps to better elucidate the misunderstandings going on in this thread. I’d also like to say that it is only with respect that I engage in this dialogue. I am not trying to dismiss anyone’s perspectives or experiences, just offer an alternative perspective to consider. I feel like, as a feminists and skeptics, these sorts of issues are extremely important and we should be able to discuss them critically. I completely understand that there are emotions involved on both sides of this discussion (me included)–I just hope we can all take a step back and look at what we are all really trying to accomplish here, which is a dialogue and consciousness raising.

          I apologize for the length of this comment, but I feel this is an extremely important discussion to have.

          • GID occurs pretty much universally, across cultures. How it ends up being expressed, how it is defined, and what socio-cultural structes exist to accomodate it is what varies, not the underlying issue. Transsexuality is no more something that “only occurs in a Western context” than homosexuality is… a narrative often espoused in extremist Islamic states (“homosexuality is a symptom of western corruption”) to deny the fact that homosexuality is an inevitable, inextricable part of human sexual variance; something that occurs universally, regardless of the social conventions we build around it. Just like GID. Like the narrative I’ve often come across where people will say transsexuality is simply an “invention” of 20th century medicine and a symptom of late-capitalist “displacement” and “lack of psycho-social integration”, conveniently ignoring the many, many other cultural contexts in which it occurs.

            And just like physical disability. A social structure that does its best to empower and accommodate people with differing physical needs won’t, in and of itself, eliminate all of the challenges and suffering that can often go along with those differences. Putting for the concept that disability is merely a social construct, to me, is more belittling of the hardships they face than to acknowledge that there is an actual, real, non-socially-constructed difference between the experiences of people with disabilities and people without them.

          • Again, I’d like to see some literature backing up your claim about the universality of GID. I just have a hard time wrapping my head around the idea that GID can be a universal pathology. What methods are used to come to that conclusion?

            As to the idea that homosexuality is a Western construction, that is not something particular to non-Westerners. Michel Foucault asserts this bluntly in The History of Sexuality, Vol. 1., though I’m not sure if I agree or disagree with him (he does make a compelling argument). That being said, if you look at the ethnographic record, homosexuality (defined as an identity, not as a behavior) is not present universally. Even in societies where people engage in same-sex sexual behaviors there are people who do not build an identity as a homosexual. So, again, there is a distinction between homosexuality the behavior (which I would agree is most definitely a common part of the variation of human sexual behavior) and homosexuality the identity (which is not a universal). Maybe this is where I am missing something. The “I” in GID is identity, and maybe my understanding of that term is fundamentally different.

            Re: disability: I never said disability is “merely a social construct.” Claiming that social constructs are not “real” is false, and perhaps that is another area of miscommunication here. Social constructs are very real and have very real effects on people’s lives. Race is a social construction, and I would never tell someone that race does not exist as a meaningful category and/or identity–that would be dismissing people’s real experiences of racism and oppression.

            As far as belittling people’s experiences, I think I was pretty clear about how the social model of disability uses the term “disability” differently from the medical model of disability. I also think it is important to note that the social model of disability comes directly out of the disability rights movement and is something that has been adopted into the social sciences. It’s not something able-bodied social scientists just invented as an explanatory model because they favor social constructionism or something like that. I am actually advocating that we use a model that PWDs have put forward to explain disability and that we abandon the medical model because PWDs disagree with it and have provided very convincing arguments as to why it is harmful.

          • Indigenous cultures of the Americas had a variety of two-spirit identities that accommodated various transgender modes of expression. Some tribes held them as having special status or shamanic power. India had the sub-culture / spiritual group called Hjira who were mtf spectrum transgender (though intersex folk were also included). They occupied a fairly accepted social position until stigmatized by British imperialists. Thailand has had the tradition of kathoey… they are both stigmatized AND sometimes regarded as “lucky” or a status symbol. Islam has had the category of mukhannathun, who were mtf / eunuch and occupied a specified, accepted social role. There were the Galli priestesses of Cybele in Ancient Greece. Afghanistic had a special status afforded to trans men in families without sons… the name escapes me at the moment. There are numerous other examples. And basically in EVERY culture, throughout the world, in every historical time period, we can find examples and instances of transgenderism. The literature substantially supports this.

            Yes, the exact socio-cultural way these identities were treated, defined and articulated has varied widely. Sometimes regarded as “both sexes”, sometimes as “third sex”, sometimes as genuine members of the identified sex. Sometimes as stigmatized outcasts, sometimes regarded as having special status or special spiritual significance or potency or powers. But what is a culturally universal constant is the existence of individuals who express their gender in a way “opposite” that of their assigned sex. The fact that the exact end-point of their transitions varied does not, to me, suggest that the actual feelings and disorder were different, it simply suggests that their cultures provided limited means of accommodating, expressing or coping with those feelings. I do not in any way think it’s much of a leap to imagine that throughout all of these cultural expressions of transgenderism, there were people experiencing what we call GID: a sense of extreme discomfort with the gendering of their body. People dealing with that particular issue may have been, due to cultural context, inappropriately lumped together with people dealing with issue of gender expression, or intersexed bodies, but just because a culture refers to disparate groups by one term doesn’t mean they ARE that term.

            Language and culture profoundly shapes how we conceive and think about realities. But it doesn’t actually change those realities. Although GID may have been concieved, defined, articulated or expressed in different ways throughout different cultures doesn’t mean the underlying issue wasn’t constant: a disconnect between gender identity and physical anatomy.

            And to keep it from straying too far off topic:

            Again, no matter how we may define, articulate, or think about physical disability, physical disability is going to go right on existing, and continue to have consequences for those who live with it. The experiences won’t be exactly the same, no, nor shall how they or we think of those experiences and bodies. But the hard reality itself will remain.

            There’s a whole bunch of stuff going on.

            DEFINITIELY, there is SOMETHING that is happening.

            Let’s call it “the world”.

            In order to think about it, and deal with it, we have language. And that language will very shape how we think about it and experience it and deal with it. But it won’t change the stuff. It won’t change the world. It doesn’t give a damn what we call it.

            Which is not to say that we shouldn’t think about our language, or how we deal with things, or how we think about them, or how conceptions may vary from culture to culture, or how sometimes things we take for granted as a given or reality or common sense or culturally universally AREN’T, but yeah… in some cases, some things really are real, and really are culturally universal. Like disability, variation in sexual behaviour and orientation, and variation in gender identity. Those things will occur in both horribly bigoted, insensitive cultures AND extremely respectful, sensitive, diverse ones. We can’t make problems go away just by attempting to come to a cultural consensus that they aren’t problems.

          • P.S.

            I agree with Foucault that homosexuality as an identity and culture was simply a byproduct of the medical pathologization of it, and its treatment as being a defining characteristic of a person’s being. But homosexual behaviours, same sex relationships, and individuals who are primarily or exclusively attracted towards same sex partners, is culturally universal. Whether or not those behaviours “matter” enough to regard them as a separate identity is culturally relative, but the existence of the phenomenon is not. So when I speak of homosexuality being universal, I don’t mean in the sense of “gay identity / culture”, I mean in the sense of same-sex sexual behaviour and inclination. Likewise when I say GID or disability is universal, I don’t mean in its precise iteration as it occurs in our culture, merely the underlying phenomena.

            Also, I feel that here in North America, it’s almost “too late” in regards to things like homosexuality being an identity. We’ve treated it as such for so long that we’ve created a unique and specific set of experiences for those who do have primarily same-sex attractions, and those experiences are definitively less privileged than those of heterosexuals. So that creates an actual difference that deserves to be acknowledged and addressed. Same with race. There was never any good reason to judge a certain phenotype as a separate category of human than another (while treating other phenotypes as a non-issue), but since we went ahead and did so for so long, and continue to do so, we have created a different, less-privileged set of cultural experiences that deserves acknowledgement, and created social inequities that need to be addressed.

            Or basically, we made our bed and now we need to lie in it.

          • I am well aware of the cross-cultural examples of trans expression (though I am always hesitant to claim that “every culture” does this or that). This is not the issue here. The issue is that I have asked for evidence showing that GID (a Western psychological explanatory model) is applicable cross-culturally. If you look at the DSM-IV, the fourth criterion of diagnosis involves social impairment. I think that’s a pretty clear indicator that social support is a factor. Additionally, many of the examples you list above (and people within our own society) do not report feeling like they are in the wrong body. They feel like third, fourth, fifth, genders (as you pointed out), and their societies accept them as such. In other words, categorizing people as GID is placing them into OUR explanatory model, something they may not agree with (and they may not feel any of the diagnostic criteria apply to them, even though they appear to us to fit).

            You said: “but just because a culture refers to disparate groups by one term doesn’t mean they ARE that term.” I agree completely, which is why I am asking you for evidence that supports the argument that GID (our cultural explanatory model based on Western medicalized knowledge) is cross-cultural. To flip your argument around, just because our society refers to people by this one term does not mean they ARE that term. Do you see what I mean?

            You said: “Language and culture profoundly shapes how we conceive and think about realities. But it doesn’t actually change those realities.” I’m not sure what you mean here. Culture absolutely DOES change our realities. In profound ways. It is what allows you and me to sit at these computers and talk without being in the same room. Acquiring language shapes our brain physically, which affects our perceptions of things like color. And cultural and social practices also affect our biology (e.g., epigenetics).

            As far as disability, I have been pretty explicit in explaining the position of those of us who adhere to the social model of disability and why it is problematic to ignore this and connect disability with individual impairment. I really do not know how else to explain it other than we are defining disability in different ways, and I have laid out pretty clearly that this fact alone can be a problem when discussing disability in forums like this. Regardless of what *you* mean when you say disability, other people think of disability differently. All I am asking is that we are all sensitive to this and that we be very careful when using disability as a framing strategy.

            You said: “So when I speak of homosexuality being universal, I don’t mean in the sense of “gay identity / culture”, I mean in the sense of same-sex sexual behaviour and inclination. Likewise when I say GID or disability is universal, I don’t mean in its precise iteration as it occurs in our culture, merely the underlying phenomena.”

            And I think this is where you and I are having a disagreement. I do not think of homosexuality or heterosexuality as behavior or inclination. To me, those are *identities* built around behaviors, emotions, attraction, etc. People can have sex with the same sex but identify as heterosexual, or have sex with the opposite sex and identify as homosexual. We are basically using the same words, but we have defined them in very different ways.

            Anyway, I think I’ve pretty much said all I can say about this here. We can take this conversation off the comments if you want. I definitely would like to continue this discussion with you.

            I do want to apologize for taking this so far off from the intended discussion, but I am glad that we have had the opportunity to talk about these things a little bit, even if we all disagree. ;)

          • I think you’re misunderstanding me. As I said, I am NOT trying to apply our PRECISE model and understanding of disability, sexual orientation or GID to other cultural experiences of these things, or saying that it is universal in exactly the same sense that we regard it. I tried to make that explicit. What I am referring to as universal are the underlying phenomena. Whether we call someone “transsexual” or “hjira”, there is a reality beneath those concepts that is common to them both. Whether we are sensitive and accepting of disability, and whether we use a medical model or a social model or an individual model, there is still a difference of physical experience that can be challenging. Whether we treat same-sex attraction and behaviour as an identity or as simply something that some people do, it goes right on occurring. Like you, I’m at a bit of a loss as to how to explain this any better than I already have.

          • And no, I don’t have hard evidence that GID, exactly as we define it, particularly in the DSM of all things, occurs universally. And we CAN’T have hard evidence, because this is an issue of sociology and history. But as said, we do have a record of various expressions of transgenderism occurring in an extremely wide variety of cultural contexts, and I think it is entirely reasonable to suspect a common underlying cause or ‘disorder’, especially given the amount of evidence we’ve thus far acquired about its potential neurological origins.

      • Will: I also agree with what Wren is saying–she is spot on that much of what happened to my Aunt was an issue created by *us*, not her–the way in which her family didn’t even try to learn sign to communicate with her, for example.
        If my Aunt were born today, I KNOW her life would be very different, and much better. She may have been able to develop a lot of the personal skills she lacked if she hadn’t been hidden away away, and may have been able to grow into someone that could live independently.

        But I also think that we are having two very different conversations and not connecting.
        I KNOW that Jan suffered a great deal physically. The congenital issues are what ultimately killed her in a long, painful way–she died younger than I am now.

        It is not emotionally painless to be different. And it took a big toll on my dad. She was his sister, and he couldn’t protect her.

        That is a whole lot of pain that could have been prevented. Sure, everyone in my family will experience pain, and different disability experiences. But these *specific* ones didn’t have to happen. And watching people you know and love suffer is really hard.

        I am trying (as is Felicia) to separate out what is being said here from the emotions of protecting and loving family. As I said, I think both you and Wren are spot on and absolutely right about the way that our culture defines and constructs disability.

        But I’m also trying to balance my desire to tell what I think is an important story about my family–one that shows that vaccination can save and change lives–with my desire to keep some information private, and my guilt at how we failed her. And to tell that story to people within the context of a blog, which constrains narratives in certain ways.

        • Bug: You wrote, “[Wren] is spot on that much of what happened to my Aunt was an issue created by *us*.” This is not something I said, implied, or meant. I tried to be very careful to NOT engage your personal narrative (one that was candid, valuable, and a necissary part of the dialogue). Instead, I tried to question the usefulness and fairness of the the medical model of Disability, something that is an enforced cultural and medical attitude that, like racism/sexism/etc, robs *all of us*.

          You said, “If my Aunt were born today, I KNOW her life would be very different, and much better.” I don’t know if that is true. The medical model of Disability is still the most normalized one. That’s why I wanted to discuss its fairness. I want to be very clear, in case I wasn’t before, that your lived experiences, your family, and your Aunt, were never what I tried to dismantle or challenge.

          • I give up trying to communicate with you, Wren.

        • I think this really gets to the crux of the matter. If the vaccine had been available, your aunt would not have had to suffer physically, be constantly hospitalized, and die far to quickly. While the deafness, blindness, and attention span were also problematic, what I took from your story (and what I feel is clearly restated here) is that the physical suffering combined with other hardships that came from both social and inherent difficulties that come with having a loved one with a disability were all PREVENTABLE. No one is saying that blindness, deafness, and other disabilities are the end of the world, but what many of us are saying is that if it’s preventable through vaccination and all sorts of suffering can be prevented, WHY NOT DO IT?

  13. Natalie, I agree with all you said. My only issue (if I wasn’t clear earlier), is we should have this discussion in comments to a post that is about it, rather than in one that is about vaccinations.

    My reason for this is that Google is forever (or at least a very long time by Internet standards), and it will be much easier for someone in the future to find out what people were saying on this subject if they don’t have to look up posts about vaccinations to find it.

    That, to my mind, is the principle downside (I was going to say “evil”, but that’s much too strong a word) to thread drift.

    Wren, I didn’t mean to imply you had engaged in thread hijacking, and should have used the term “thread drift” or something similar, which is just the normal random walk of conversations away from the original topic. (Thread hijacking, to me, is a deliberate attempt to derail a conversation by making it about something irrelevant, which is not at all what I think you or anyone else did.) Sorry.

  14. Here’s my story:

    When I was 17, in 2002, I found out I had a high-risk strain of HPV. I was so scared. I was lucky enough to have a supportive mother, a good doctor, and good health insurance. My doctor explained to me that it could cause cancer, but that cancer is 95% preventable if they catch it early enough. I had to get pap smears every 6 months, and colposcopies that are basically a procedure to look at the cervix with a microscope. I once even had to get a biopsy of my cervix, and that was not fun. It’s like the worst menstrual cramps ever times a thousand.

    My doctor told me at the beginning that if I didn’t get cancer in within 5 years, the risk of ever getting cancer from the HPV would drop pretty drastically. I kept up with my pap smears throughout college, and was greatly relieved when I got to the 5 year mark without cancer. At around the same time, my pap smears starting coming up negative. I was surprised because I didn’t even realize that the virus could just go away on its own.

    I’ve had several negative pap smears since then. I also got the Gardisil vaccine last year, to prevent against the other bad strains of HPV. My insurance didn’t cover it but I was 25 and about to run out of time before I would become ineligible. Luckily I could afford the several hundreds of dollars, and the time off to go to the doctor for the three separate shots. I also got my Tdap booster at the same time.

    I know the vaccine doesn’t protect me or my future children from all strains of HPV. But it’s such a relief to know that my kids probably won’t have to go through the same thing I did. And I was one of the lucky ones.

  15. Another issue with Congenital Rubella Syndrome is the delayed effects. Just like Post Polio Syndrome, there are effects of CRS that affect persons who may only have had problems with vision and hearing. These are additional issues that occur:

    (that site did once have an anecdote of someone who was deaf from CRS, but after reaching a certain age was more physically disabled by the delayed effects)

    Also, one of the results of rubella was stillbirth. It killed lots of babies before they even had a chance.

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