He got through school, he has a good job and he married. That’s probably the biggest concern of Tourette’s sufferers and their relatives: Will their life be normal?
This quote comes from Anne Miller’s Washington Post piece, ‘‘American Idol’ segment helps push Tourette’s Syndrome into cultural mainstream,’ which I mentioned in ‘Whose Voices?‘ There’s a lot to unpack here, because there are a whole lot of problematic things going on.
‘Normality’ is often treated as a holy grail, especially for people with disabilities. Everything’s ok, as long as we can be normal, or at least act normal. ‘Normal’ is, of course, decided by the dominant members of society and any attempt to redefine normal from another perspective will be met with significant pushback. People who reject society’s definition of normal are viewed as highly suspect; look at the critical reporting on the Mad Pride movement, for example. How dare those people say they don’t want to take medications? How dare people say that being ‘normal,’ that fitting in with society’s demands, isn’t a big priority for them? For that matter, how dare people reject psychiatricization and the very idea of being ‘mad’ at all?
What this quote tells us is that getting through school, having a ‘good’ job, and getting married are the paragons of normality. People with disabilities who accomplish this triad of goals are role models. We should all aspire to this. Anyone who doesn’t is just giving up. Anyone who doesn’t want a college degree, a good job, and a spouse is clearly a social failure, no matter what ‘reasons’ can be mustered to explain why these goals are not of interest.
Never mind that there are barriers to getting through school. Everyone wants to go to school, right? There is not one single person in this world who is not interested in going to college. Who doesn’t believe that school is something that ou needs. Who has other goals. College is where it’s at! After all, if you don’t go to college, you are an abject failure who will never get anywhere in life.
That’s certainly what society seems to think. People are shamed for not wanting to go to college or for being unable to attend if they do want to go. Let alone people who want to leave high school early; they are informed that they are throwing their lives away and ‘dropping out.’ If you do decide not to go to school, you had better be an accomplished artist or musician or writer or something to redeem yourself in the eyes of society and even then people will express amazement about having ‘gotten so far without a college degree.’
And, of course, everyone wants a job, right? Specifically a ‘good job’? People who do not want to work are lazy. Because working is empowering! Not wanting to work makes you morally suspect and questionable. Not being able to work, even when you very much want to do so, is a moral failing; just try harder! If you’re not working, you must be feeding off the government, which means that you expect the working people to pay for your existence. Should you do something like choosing to live with your parents, you are obviously not realising your full potential.
Marriage, too, is the ultimate social goal. There are no reasons why anyone on Earth would not want to marry. First comes love, then comes marriage[1. No baby in the baby carriage for you, because your child might be disabled like you.], as we know, so clearly, if you are not married, you are not capable of love or being loved. And, of course, everyone who does want a spouse can get married, so it’s not as though there are any legal impediments to marriage.
These are all things which people believe.
These are all things which ‘advocates’ believe. Note that it’s right there in the quote; people with Tourette’s are ‘sufferers’ and their relatives just want them to be ‘normal.’ Miller is proud of her husband for ‘succeeding’ and being a ‘role model’ and she wants other people with disabilities to ‘succeed’ in the same way. I’m sure it’s well-meant, but it comes across as yet another reinforcement of social attitudes about who is normal, who is a good person, who is worthy.
Who gets to decide who is ‘normal’? Who gets to decide which life goals we should aspire to? It’s the people who write the dominant narrative.
Let’s contrast that quote I used at the opener with a quote from someone who actually has Tourette’s, from the same article:
At a recent public appearance, Koterba met a mother and her young daughter with Tourette’s. The woman asked Koterba if her daughter would have a normal life. It broke his heart, Koterba recalled. “No,” Koterba told the girl. “You’re going to have a great life. An amazing life. A creative, beautiful, wonderful life.”
12 thoughts on “‘Normal’ and the Dominant Narrative”
“…everyone who does want a spouse can get married, so it’s not as though there are any legal impediments to marriage.”
Let’s not forget the heteronormativity in the assumption that we all want an opposite-gender spouse! For lo, if our spouse is of the same gender, then YES, there are legal impediments to getting married.
Amazing post. That Anne Miller piece is so many different kinds of gross, and this really unpacks it nicely.
My partner and myself often get labeled as “inspirations” because we have, tentatively, succeeded at doing some of the vaunted Normal things. We have a longstanding relationship (supposedly impossible for autistic people), we both have bachelors degrees. He has a post-graduate degree and I’m working on one. Hence we are An Inspiration, though I don’t think any of this makes us “normal,” and I certainly don’t think it’s required for a happy life, which is what the true goal ought to be. It’s really frustrating to have well-meaning able-bodied people hold us up as Inspirations like this.
Precisely my point, P. G. Dudda!
Let alone people who want to leave high school early; they are informed that they are throwing their lives away and ‘dropping out.’
It’s really fun how much shame one gets for this in supposedly progressive spaces! (Hi, I have a GED. I hated school and I have no interest in doing more of it.) Just today, I had a friend ask me if I wouldn’t get bored not studying or working, as if there is NOTHING ELSE ONE CAN DO WITH ONE’S LIFE. (Don’t people complain about jobs and school being boring, anyway?) And extra super fun times should I actually want a job, since a college degree seems to have become the minimum of education to get anywhere. I probably couldn’t manage to get hired at McDonalds, with my lack of experience on top of my GED. (And of course dropping out just means I’m LAZY, not that my brain is completely incompatible with the USian school system and I spent the last month of my last semester having daily panic attacks. JUST WORK HARDER!)
(And let’s not talk about how nearly impossible it is to get a job without some kind of experience… Experience one gets from having a job. No, that isn’t a double bind AT ALL!)
(Sorry, long and ranty. Still something I’m pissy about.)
I see a lot of this as being about survival, which might be one of the reasons it’s such a tough nut to crack. How do we go about creating a society in which everyone is provided for, unconditionally? That means even if an able bodied young person flat out refused to work for no “good” reason, they would still have a place to live, clothes, food in their belly, medical care, and be treated with some measure of respect by others. Until we have that type of guarantee, the ability to have a “normal” life (being able to take care of oneself) will always be made a priority (especially by parents). Maybe all of this striving to be normal could be redirected to working towards that sort of unconditionally provisional society.
Well, I went to college for a little while. But I got married, then got my way into a full-time job, a legitimate middle-class job. I basically am the “good crip” as far as that goes.
(Of course, I also insist on having my conditions treated to my satisfaction and my workplace adapted to fit my needs, which puts me right back in “bad crip” territory, even if I always do it with a nice tone of voice and a sincere thank you. The irony is that if I didn’t do those bad-crip things, I would no longer be able to hold my good-crip working status! I’m expected to do that without any help, you see.)
And to be honest, it gives me comfort. It does. I realize part of that comes from privilege. My heterosexual privilege that allows me to live with my partner, marry my partner and have the legal rights that come with that, have my partner recognized without trouble, and so on. My class privilege, being able to establish a stable home for myself, having health insurance and thus being able to afford the medications and treatments necessary for me to have the sort of life I do now, and so on. My white/thin privilege (even though I am not objectively thin anymore, my body type still tends to look slim) and the hidden nature of my disabilities, that allow me to fit right in and seem like a “normal” woman, even if there are a few variant behaviors — which would be counted against me if I were brown or fat or visibly deformed — but because I am white and slim and conventional-looking, they are just unimportant little quirks. I wouldn’t be able to achieve this “normalcy” at all without those privileges.
The fact that this normalcy gives me some measure of comfort is telling itself; I shouldn’t need to have the “normalcy” to be able to feel that comfort in my life.
.-= amandaw´s last blog ..the corrupt tri-state coal industry =-.
I credit this blog with finally breaking through my need to be “normal”, along with other social justice blogs. But it was the “abelist language”-series that made me aware of how much I was using that word against myself, how much interalised ableism I was holding on to. I still have trouble rembering, sometimes, that fitting the “norm” is not a measure of my value as a human being. This has been a big part of my clinical depression- and I fit almost all the categories of privilege, except for having a mental illness and a severly limited social life. I can’t even imagine how much more difficult the pressure is to deal with when you have more aspects of your identity excluding you from fitting the white, cis-sexual, heterosexual, able-bodied, christian, eduacated middle class norm.
But reading the posts here on ableist language, specifically the part where you look for alternative vocabulary, helped me a lot. Because I realised that, purely based on the meaning of the word, “average” can actually be substituted for “normal”. And once I started doing that, and started thinking some more about that supposedly, everybody wants to be “normal”, yet nobody likes being called “average”, rejecting the need to fit the norm became a little easier. I still struggle with it, even in my position of privilege, but still, reminding myself of this every now and then feels good.
I’m comfortable with the idea of not living a “normal” life.
But… and this ties in with a frequent valid complete… my mom’s not fully on board. It probably is disappointing to see a daughter with so much potential for an “above average” life – she’s so smart! – be stopped by her body. It’s been hard for me too, because WHY can’t I?
Okay, maybe I’m not fully comfortable with it.
I mean, I’m so conflicted about school. I can’t do the work required for passing if the next two weeks are like this, I just can’t. And I don’t know what I’m supposed to do. Because there’s a feeling of investing so much time in school (three years) and not wanting to walk away from it. Especially since I do love learning, and when I do feel good, I can write my papers.
Before the pain took over, I still didn’t want a “normal” life, but my rejection of “normal” is wrapped in privilege.
I have the choice not to get married to a man, as a straight woman. But if I wanted to marry a woman (and stay in Tennessee), I wouldn’t have the option to say yes, so I wouldn’t have the choice of saying no. Does that make sense?
And since I “just” have chronic pain, not a visible disability, not something connected to genes*, my decision not to have kids is the same way – it is expected that I will have kids, in the next 10-15 years, I may even be encouraged to do so. It is a luxury to say nope. A luxury from the physical sense (if I can have kids 10 years down the line, who knows) and from a societal one – they will approve of the baby in the baby carriage because I look “normal”.
*Though the thyroid issues probably would be passed down – obviously, I have no way of knowing if my mom’s dad’s parents had any thyroid problems, but he did (and he died from heart problems after getting it removed and getting a HUGE smiley face scar on his neck. Mine is small and pink) and my mom had minor ones – she stopped taking the meds so she could go overseas, and her thyroid is still normal. Mine isn’t. But thyroid problems are “easy” to solve (surgery, drugs) and (most important after 4 years of constant pain) easy to prove.
@lauren: your substitution of “average” for “normal” really makes me think! Thanks!
Am I a bad PWD if all I want is to be normal?
@Mel No! One disabling strategy our society relies on is policing the boundaries of “who’s disabled” and “how to be disabled.” That policing is principally done by “experts,” who generally don’t have disabilities. It’s also carried out by internalized disablism: following a “good crip” script, as @amandaw mentions above.
For me it’s crucial for disability rights advocates not to get caught up in labeling folks “good” or “bad” PWD.
Acknowledging the realities of my impairments is the result of my circumstances, my studies, and my conversations with other PWDs. If I could turn a switch and never feel my fibro pain or migraines again, I would do it tomorrow. I don’t see it on the horizon, but I do keep my antennae at the alert.
What I reject is the place “normality” has in our society: the assumption that there’s only one way people can be, and anyone who varies has a duty to squeeze and stretch into that single shape.
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