#FTF: Susan Wendell & the gendering of disability

It’s Feminist Theory Friday, people, and I’ve decided we should take a brief interlude from critiquing so-called “third wave” feminist politics to explore the idea The Rejected Body by Susan Wendellthat “disability, like gender, is a social construction” — a social construction that disproportionately disadvantages women.

As I’ve mentioned a number of times, I am the overbearing older sister of a young man with both Down Syndrome and Autism and recently married into a family which gave me a brother-in-law with a similar profile. This undoubtedly shapes my understanding of disabilities but, readers will notice, both of my developmentally disabled family members are male and so their experience navigating the world doesn’t give me much insight into how women with disabilities experience the combination of sexism and ableism.

I’m going to speak from a place that I typically avoid. At sixteen I was diagnosed with Attention Deficit Disorder (which the current diagnostic manuals call ADHD Inattentive). Later on in life I was diagnosed with Chronic Fatigue Syndrome, the symptoms of which had been presenting themselves before my ADD diagnosis, but weren’t legitimized or treated until every other possible diagnosis was ruled out. This took over 15 exhausting years of testing, filling out forms, going to specialist appointment after specialist appointment, and trying to convince medical professionals that my inability to keep my eyes open for more than a few hours wasn’t “all in my head.”

Technically, these two factors make me a person with “an invisible disability.” I don’t call myself a “disabled woman” and I don’t like to talk about it for several reasons. First, while I believe that any feminist practice that excludes women with “multiple oppressions” is not a feminist practice at all, I also can’t support the idea that in order to talk about sexism in a meaningful way, a woman must have an additional trump card or risk being called out for non-intersectional feminism.

Secondly, while I experience systemic problems as a woman who has ADD and Chronic Fatigue, I don’t experience overt person-to-person ableism in which others question my worth and capabilities because of a visible condition which cannot be hidden from the world. For this reason, I experience most of the privileges that come with being of able body and typical cognitive development.

Thirdly, I’m aware of the stigma that comes with being considered disabled. I accept that many of the ways I operate are influenced by having ADD and Chronic Fatigue (like my inability to notice mess, my tendency to lose important paperwork, or the fact that I’m unable to stay on top of the bureaucratic shit-storm that comes with receiving any sort of support for my conditions). However, I’d much rather have people treat me like a human rather than a walking pathology. The fact that this is something I can more or less choose is part of abled privilege.

Back to the socially constructed part. That is why we’re here after all. In Susan Wendell’s “The Social Construction of Disability” she asserts:

… Neither impairment nor disability can be defined purely in biomedical terms, because social arrangements and expectations make essential contributions to impairment and disability, and to their absence. […] [The] distinction between the biological reality of a disability and the social construction of a disability cannot be made sharply, because the biological and the social are interactive in creating disability.

Wendell argues that disability can be a device of our own creation (societally) in three ways.

First, “Social conditions affect people’s bodies by creating or failing to prevent sickness and injury.” Take, for example, the “work/life balance” culture of the North American workplace.

As Health Sciences PhD student Zoe Krupka notes in her article “No, it’s not you: why ‘wellness’ isn’t the answer to overwork,”

“We’re working longer hours than ever before, and as our employment conditions continue to worsen, they’re simply repackaged into a new version of normal in an effort to make the truly pathological state of many of our workplaces appear acceptable.”

This kind of (socially constructed) workplace culture (minor compared to the disabling features of war, domestic violence, prostitution, physically dangerous labour, poverty, and elitist refusals to inoculate our children from things like measles and polio) has physically disabling implications. As Lauren La Rose recently put it in The Globe and Mail:

Researchers cited studies associating overtime and extended work schedules with heightened risk of hypertension, cardiovascular disease, fatigue, stress, depression, chronic infections, diabetes and death. They also noted some studies found evidence of links between long working hours and an increased risk of occupational injuries, including among construction workers, nurses, miners, bus drivers and firefighters.

The culture North Americans (and much of the rest of the world) have created around work is, in many cases, physically disabling.

Secondly, we fail to provide people with physical, mental, and developmental challenges with the supports they need to fully participate in the parts of life that many of us take for granted. When we fail to challenge the backbreaking pace of the workplace, or the fact that many places people go to socialize are not equipped to service someone in a wheelchair or someone who is non-verbal, it is us and not people’s individual limitations that are disabling people.

Lastly, we construct disability when we stereotype people with disabilities in ways that create obstacles to full participation in life. As Wendell says:

Stereotypes of disabled people as dependent, morally depraved, superhumanly heroic, asexual, and/or pitiful are still the most common cultural portrayals of people with disabilities. Stereotypes repeatedly get in the way of full participation in work and social life.

We do this all the time don’t we? Take, for example, the fact that many people believe prostitution is necessary in order to satisfy the needs of disabled people (okay, let’s be serious, just disabled men). Many people consider themselves enlightened for having this opinion because it counters the idea that disabled people are non-sexual beings. However, if you look at it more closely, it also reinforces the false and socially constructed stereotype that portrays the disabled as people no one would consider sleeping with for free or people that always need extra (read: burdensome) help during sex. Progressive? Far from it.

So what does this have to do with feminism? For starters, many of the ways that we classify or recognize disabilities are based on male experience. Because male socialization and female socialization are different, the sexes often don’t present disability in the same way. I was well aware as a child that I didn’t fit well into the mainstream school system. However, I wasn’t diagnosed with Attention Deficit until the eleventh grade and had never been given any learning support (in elementary school, high school, and even university) because I didn’t exhibit any symptoms of hyperactivity, a symptom which is more common among males than females.

Additionally, we’re less likely to take conditions experienced by women more often than men — like Chronic Fatigue, Fibromyalgia, and Anxiety — seriously. For myself this meant a 15 year battle with the medical system to prove that I wasn’t somehow hysterical, chronically lazy, faking my experience, or simply overreacting.

Lastly, women with disabilities are penalized more harshly for failing to live up to the gendered expectations placed upon all women. When we treat women as a class as a population of sex objects, guess who is the most severely ostracised? The women who have been stereotyped as asexual by abled people. (P.S. For those of you who think hypersexualizing disabled women will solve this… you’re wrong. And a pain in the ass.)

Unfortunately, Wendell doesn’t have any quick fixes for us in this essay but I have a few (non-exhaustive) pointers based on my personal experience:

1) We need to make women’s experience of disability a topic of interest and pursuit in feminist scholarship.

2) We need to challenge the fallacy that employers can recklessly expect more work while blaming the resulting disabilities on individual employee’s failure to practice “work/life balance” or “wellness” or whatever horseshit term is the flavour of the corporate week.

3) Women need to congregate in numbers to insist that medical communities take their experiences with illness seriously. The isolation and privacy is working against us in this way. It’s much easier to tell a single woman that she’s hysterical than a massive group.

4) We need to challenge both the stereotyping of women with disabilities, and the sexual objectification of women as a whole.

It’s critical to develop strategies to deconstruct disability and ensure that we are not, as a society, disabling women as a class.

Jess Martin
Jess Martin

Jess Martin is a public relations professional, an aspiring writer, and an assistant editor at Feminist Current. She prefers to write about feminist topics, disability, or environmental issues, but could be persuaded to broaden her horizons in exchange for payment and/or food.

In her spare time Jess can be found knitting, gardening, or lying in the fetal position, mulling over political theory that no one in their right mind cares about.

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  • SBTV

    Are there any examples of a person with severe physical disabilities having a healthy sexual relationship with an able bodied person? I don’t mean a paraplegic injured in an accident.

    On articles like these it is often implied that there are but yet there is never an example given.

    • Dogtowner

      Why do you think it is your right to know the details of someone else’s sex life?

    • At one point disabled people were blogging about disability and sex on Valentine’s Day. This might have been 5 years ago. I don’t know how to find any of it but I’m sure some of it is still out there.

    • DUDE, the fuck is wrong with you?

  • S.Law

    As a person with an episodic illness (generally invisible unless things rachet up) I can try to keep with the Jones’, that is, go along as if nothing has changed (attend classes, go to work, etc.) the problem is I generally get sicker or remain debilitated for a longer period of time if I choose this course. Sicker in my case is acute bronchitis, inability to breathe with any exertion, difficulty keeping food down (due to mucus production, you can’t swallow all of it, you gag/vomit up some along with food), etc.. As a lifelong moderate to severe asthmatic whose main trigger (in adulthood) is respiratory viruses I have visible symptoms (coughing, wheezing, congestion) but I just sound like I have some viral plague so I am treated like a pariah at work (I have to stay away at my sickest because I am almost comatose). Which leads me to question the intelligence of those around me, I mean what ordinary person has these symptoms for weeks or months. I have given up explaining anything to ultranorms (variation on terminology used in John Wyndham’s “The Chrysalids”) as I call them, I don’t think they deserve an explanation. When you try to explain anything to smokers (why you would prefer they not smoke around you) they give you a 20-30 minute lecture on their many trials (e.g. hospital no smoking zones, men who say they are not attractive when they smoke, people at child-centric areas in parks, etc.). Which means I don’t volunteer with certain groups as they have a cadre of dedicated smokers. I grew up in a household of smokers as an asthmatic child, I think I experienced false consciousness (identified with my oppressors, my family) and felt sympathy for smokers and never asked them to not smoke around me until very recently but the respect is really flows one way only, in the direction of the smoker).

    I did not talk about asthma at all until a few years ago when I became fed up with the misinformation and misrepresentation of the illness in the media and amongst people I knew. I wouldn’t even use my inhaler in public (washroom stalls were my choice location), because I did not want to draw attention to myself. I still remember the treatment of the asthmatic character in “Lord of the Flies” which I read when I was 12. I think having a chronic illness has taught me something about what it feels to have a sense of control and health just stripped away (in a matter of minutes or hours in case of asthma). I think I understood my mother’s struggles better than my siblings because of my own experiences with chronic illness. Ultimately people, including doctors, just get sick of you because they can’t fix you and you can’t fix yourself (beyond taking medication and trying to keep fit). They talk about avoiding triggers but if your trigger is respiratory viruses, you are pretty much screwed (even with much hand washing, avoidance of obviously sick people).

    Asthma is sort of a double whammy too, given that people still assume it is in your head or is exacerbated by emotion. So a woman with asthma … I have to had to demonstrate to every doctor that I have gone to how sick I can get (basically by having lung function decrease and my lungs fill with mucus). In one case they said, you look (a visual exam that any stranger on the street could make) so healthy, are you sure you have asthma. They have said this when I am in the throws of a full blown virus-induced asthma episode. After reluctantly listening to my lungs with a stethoscope they rush around (comically really) and hook me up to a nebulizer with ventolin. I have never had an asthma attack because I became emotional however if you are in status asthmaticus getting upset can make things worse (e.g. shallow breathing, hyperventilation not good), so you have to work at self-calming techniques.

    I don’t know why doctors are so dismissive of women’s health concerns. Probably just part and parcel of societal misogyny. I think a proportion of female doctors also demonstrate these beliefs. The only doctor who accepted me as is, took me seriously on first contact was a doctor who also had asthma. I think the treatment of pregnant women is also disturbing, e.g. control of their bodies and behaviour during pregnancy, large number of medically unwarranted cesareans. Or the lack of medical research on heart disease in women leading to a lack of understanding of the difference in symptoms between the sexes, until recently.

    • Dogtowner

      S.Law, my husband is an RN and he comes home with stories of willful neglect of female patients. When he was a nurse’s aide serving as a unit secretary, he became persona non grata because he objected when an RN catheterized a fat woman and did not follow sterile procedure. If you think women are treated badly — which they are! — try observing the treatment of fat women. Misogyny is simply so ingrained in our society that doctors and nurses, male and female, are totally unaware of their own hatefulness.

      My last experience of an MD? (I personally see a male nurse practitioner.) A woman doctor whom I have never seen saw my bloodwork when my PCP was on vacation and called me up to tell me I was going to have a heart attack. If she had TURNED THE PAGE — something I learned to do prior to kindergarten — she would have seen that my thyroid hormones are, if anything, on the low side. I truly hate and despise MDs.

  • Dogtowner

    3) Women need to congregate in numbers to insist that medical communities take their experiences with illness seriously. The isolation and privacy is working against us in this way. It’s much easier to tell a single woman that she’s hysterical than a massive group.

    If I were in better health, I would very much like to work on this problem. My disability stems from a serious underlying health problem — hypothyroidism — that was deliberately (and I sometimes feel maliciously) ignored by the so-called medical profession for decades. How does one deal with a group of people who are stunningly and willfully ignorant about the function of critical organs, in this case the thyroid and adrenals? I know of no way to educate doctors except perhaps through a massive class-action lawsuit. I wish I were more creative and could come up with some ideas. I know I am not alone in being disabled due to medical NEGLECT (I refuse to call it by the softer-sounding term of negligence).

  • I actually like and generally agree with this article, which surprised me because I usually cannot stand the Social Model of Disability (though that may be because it is typically put forward by liberals.) It seems to blame everything on social prejudices and building construction (e.g. lack of ramps). I understand that these factors make life more difficult for people with physical disabilities, but at the end of the day I do not view physical limitations as just another neutral example of human diversity (like skin colour). I would much rather have an able body than one which was severely physically limited, no matter what kind of society I was in.

    Able-bodied people will always be able to do more things than those with disabilities can. Able-bodied people could even sit in wheelchairs if they wanted to (not that I am suggesting they do, since it seems somewhat disrespectful). This is why I support people with disabilities who want those disabilities cured, while it seems that those who adhere strictly to the Social Model, particularly liberals, do not. Liberals love to stick the word “cure” in quotation marks, implying that everyone is perfect and nobody should ever be “cured” of anything. This kind of approach would have us all dead at a young age.

    I have seen the disability activist movement viciously denounce any attempt to cure disabilities as a totalitarian plot to force everyone to undergo such procedures and remove diversity from the population. Somehow it does not occur to them that there are people who want their physical impairments cured or who even want to end their lives because their impairments are so severe and physically painful. Perhaps they would say that these people are suffering from “internalised prejudice” and need to learn to reinterpret their impairments as positive opportunities for growth.

    It seems liberals support the right of people to do what they want with their bodies so long as it is convenient for their ideology. They will support surgically altering healthy body parts (breasts, genitals, etc.), but not improving the capabilities of body parts that are actually limited in some ways. “You can do anything to your body” they say, but only if it weakens you physically or does nothing but make you look prettier while depriving you of thousands of dollars.

    Back to the idea that society causes disabilities, I actually agree with the argument that is being made in the article. Poor working conditions are clearly a factor in causing disabilities. I would not surprised if extreme beauty practices (including those which are or were common in non-Western countries like necks rings and foot binding) were also a cause of disabilities. That said, I feel that an injury is also a medical event. It is a case of real damage being inflicted on the body, not just a social interaction.

    I am frustrated that there exists this split between the social “sciences” and biology/medicine within academia. I think it is largely caused by so-called “social scientists” having no real appreciation of the scientific method (though to be fair many science students do not either) and insisting that because they are sociologists (or gender studies experts or social justice activists or “feminists”) that they will therefore examine everything socially and ignore biology (and other things that perceive as “patriarchal” and “totalising”, because they involve “male things”, like reason and math.) This is not the way real science works. In real science if another science is related to your science (e.g. biological things like plants and animals influence rock formation and vice versa) you are allow to talk about that science as it related to yours.

    Biology and society clearly operate together to bring about oppression (e.g. those born with vaginas are indoctrinated into femininity, which makes them vulnerable to oppression), but if you try to talk about both of them together, liberals label you as a “biological essentialist” (simply because you mentioned society) and reactionaries accuse you of being a utopian with no understanding of “human nature”. The good news is that psychologists are starting to recognise that social and biological explanations cannot be completely seperated from each other (though they are still placing a disproportionate amount of emphasis on biology), but it will take a long time for the general culture to catch up to this knowledge.

    • S.Law

      Re: comment “…seems to blame everything on social prejudices and building construction”

      Bad design is just bad design. Making no accommodations and not factoring in diversity of humans who will be using your product or accessing your building (or trying to) is not a supportable stance. You really need to view the “Myth of the Average”.

      https://www.youtube.com/watch?v=4eBmyttcfU4

      There is no mythical average person. The average person in medicine, engineering and architecture historically tended to be male, around 6 feet tall, able-bodied. Acknowledging that there are people with disabilities, short people, old people, temporarily disabled people (broken limbs, surgery), toddlers, and others is not an extreme position.

      The majority of people are engaged in living their lives not trying to score points (re: …”disability activist movement viciously denounce any attempt to cure disabilities as a totalitarian plot to force everyone to undergo such procedures and remove diversity from the population”). Trying to magically think your way out of a disability or illness doesn’t work either. I cannot tell you the number of times my own family has tried to propose another option for treating my asthma, other than prescribed steroids. The steroids work (for the most part) that is why they are used. People who scream about big pharma just irritate me. Because without big pharma and medical research I would be much sicker and maybe not even alive (given that I have had asthma since I was a four year old).

      Dismissing people whom you label “… social justice activists or “feminists”” as unscientific really causes me to reject your comments. I have a BSc and did research in a lab for several years. I also have degrees in the humanities and social sciences. I appreciate the scientific method and the importance of scientific habits of mind and am frequently upset by climate science denial (denialists deny climate science as a whole, not just climate change). The scientific method is not as cut and dried a method as you suggest, there is serendipity, and sometimes your efforts resemble a fishing expedition (even with requisite background research and lit. review). I did a lot of research on scientific literacy for my graduate work and there is more than one way to operate in the scientific sphere. There is much room for creativity.

      “They will support surgically altering healthy body parts (breasts, genitals, etc.), but not improving the capabilities of body parts that are actually limited in some ways.” And will co-opt practices that are embedded in a certain cultural group (e.g. scarification, neck lengthening (specific to women in certain African and Asian cultures)). But people have been modifying their bodies for a very long time. I agree that much of this behaviour in our culture just seems self-denying and destructive but … I think I would happily seek a permanent remedy to my asthma, unfortunately no such remedy exists. I don’t think you can experience (historically) the amount of rejection that some of these people have experienced – from mainstream culture – and expect them to accept your categorizations of normal or acceptable. What choice did these groups (historically, and very recent history) have but to form their own cultures and gain support from those cultures. People live in communities, but what if you are expelled from your community or routinely ignored. You need to find a community or create one.

      My mileu growing up was a household of smokers – who didn’t give a damn about anyone else’s needs but their own. I am sure if I was growing up now they would deny the health effects of second-hand smoke … on children and asthmatic children. They have been fortunate enough not to suffer any overt health effects (heart disease, lung or other cancers) but don’t care that their smoking likely contributed to the development of my childhood asthma (well life long really).

      Until society stops treating the non-average like freaks they can expect push back. And treating ‘normal’ people like they are failing at being normal (many women and girls get this message from magazines, friends and parents). I don’t think you have all the answers – though you may be convinced that are do and that everyone else should tow your party line.

    • Lavina of Rome

      Building construction is institutional not social.

    • Lavina of Rome

      The disability rights movement is not inherently liberal. Its been co-opted by liberals these days like most social justice causes but back in the day Gay Lib, Women’s Lib and Disability Rights all had healthy radicalism within them in their own right. I don’t think you are too well educated on the subject of disability issues from this comment. A lot of the reason why disabled people can do less things is because of lack of accessibility. We can often do the same thing in different way, such as a blind person reading through braille but throughout most of history, this option was not yet available.

  • Similar to ADHD, the original description of autism is male-biased. Women/girls typically do not present the same way, and can be dismissed because we don’t appear to engage in stereotyped repetitive behaviour. Some experts argue that we don’t behave this way, others that we do but you have to ask the right questions. Personally I think I fall into the “ask the right questions” category.

    Regardless, we would still qualify for social communication disorder, but I don’t think many psychiatrists are familiar with it – it’s basically the other two sets of symptoms of autism minus the stereotypy. Also, it has its problems.

    e.g. http://sfari.org/news-and-opinion/news/2014/autism-characteristics-differ-by-gender-studies-find

  • Tamara

    Well in keeping with the topic of the article, the author may want to look into being tested for autism as well–as her brother has autism, and it is genetic, and almost all of the studies on autism have been on MALES; women and girls present symptoms of autism in a COMPLETELY DIFFERENT WAY. Women and girls are commonly misdiagnosed with borderline personality disorder, bipolar disorder, ADHD, depression, etc.–when they are actually on the autistic spectrum. Have been researching this heavily in recent weeks, as I’ve only now discovered I have AS–and I’m 34!