(Trigger warning: Mention of rape and other forms of sexual violence, as well as extensive discussion of various forms of privilege and ableism.)
Privilege and the Myth of Independence
Living independently with minimal or no supports has been held for a long time—and continues to be held—as the standard that all disabled people should strive to reach and the ideal that parents, usually but not always nondisabled, should work toward on behalf of their disabled children. The legitimacy of this standard and the context that has created it are rarely questioned or examined, though it is one heavily steeped in ableist theories of disability.
Karla McLaren put it this way—
As a pseudo-NT, I see a world that is totally made for me, and that supports everything about my (okay, almost my) neurology, social functioning, emotional awareness, food needs, auditory processing capacities, sensory processing capacities, and every other thing. I'm surrounded by continual, seamless, unending support that I don't even see, because it's the "regular" world.
Let's expand on this idea a bit. The concept that Karla describes is called "privilege." Privilege, which is discussed frequently in social justice and civil rights circles, is the sociological concept that the experiences of members of a dominant group or culture are expected and understood as the norm, which contributes both directly and indirectly to various forms of social ostracism, marginalization, and oppression of members of non-dominant or minority groups or cultures. In this case, it is able-bodied or neurotypical privilege that Karla experiences as a result of being nondisabled. Most of us belong to at least one privileged group, but few of us meaningfully examine and question our privileges, much less seek to challenge the premises and societal constructs that create the divide between privilege and oppression.
For example, there is heterosexual privilege, or the privileges experienced by straight people. Straight people are never blamed for problems in society. Most people assume that most other people are into people of the opposite sex. Because of heteronormativity, married men are assumed to have wives, and married women are assumed to have husbands without asking for the sex of the spouse. Straight people can generally attend religious services anywhere without ever worrying that their sexual preference will be questioned or labeled evil or aberrant. Straight people do not have to worry that they will lose their jobs or risk admission to institutions of higher learning if they disclose that they are heterosexual. Straight people can easily find literature, film, and television shows that depict other straight people as complex beings without being stereotyped into caricatures of straight people. Straight people are extremely unlikely to ever experience bullying or abuse because of their sexual orientation. And when straight people commit sex crimes, such as rape, child molestation, viewing child pornography, or other forms of sexual abuse, the crime is never, ever blamed on the straight person's sexual orientation. Absolutely none of these things are true for lesbian, gay, bisexual, pansexual, demisexual, or asexual people.
Then there is white privilege, or the privileges experienced by white people. White people are never asked, expected, or assumed to speak for all members of their race when asked questions about social experiences. When white people are hired or promoted, it is rarely if ever assumed that the white person only got the position because of xir race. When white people go shopping, they can generally expect not to be followed or harassed by store security. White people can read history textbooks, newspapers, popular magazines, and mainstream literature, and find people of their race widely represented. White people can expect the color of their skin not to be interpreted as a negative sign of their reliability, responsibility, honesty, or character. White people can enroll in classes, register for conferences, or attend social events without expecting to find themselves to be the only person of their race in attendance. When white people study history, particularly in compulsory education, they can expect the vast majority of material to cover the history of people of their race, as well as reading a Eurocentric perspective on human accomplishments. Absolutely none of these things are true for anyone who isn't white.
Then there is Christian privilege, or the privileges experienced by Christians. Christians can generally expect other people to know about their traditions and holidays, and they know for certain that their holidays will be recognized as national holidays with appropriate time off, thereby causing no conflicts or difficulties with their work or school schedules. Christians can discuss their religion and beliefs as well as display outward symbols representing their religion without fear of harassment or serious adverse consequences such as dismissal, expulsion, or victimization of a hate crime. Christians will rarely if ever be judged adversely as an entire group for the actions of individual Christians or small groups of Christians, and can expect their religion not to be maligned, misrepresented, or portrayed negatively by the mass media. Christians can expect never to be profiled negatively while traveling if they disclose or display outward symbols of their religion, and can easily arrange for themselves or their children to associate only with other Christians or people who do not dislike Christians. Absolutely none of these things are true for anyone who isn't Christian.
And then there is man privilege, or the privileges experienced by men. Men who cheat or sleep around will almost never be called sluts or promiscuous, and can enter into another relationship or marriage with few, if any, social repercussions or damage to their reputations. Men are never assumed to be the exception to their gender when they achieve high grades, advance to high-ranking positions, or accomplish extraordinary achievements. Men can be sure that when they are hired or promoted or when they are never promoted or not hired, it is never because of their gender. Men can and do walk alone at night without feeling afraid. If men have both children and a career, they will not be accused of being selfish if they choose not to stay at home. Men can easily and without any effort find heroes and protagonists in literature and other media of their gender. When men make irresponsible decisions, it is never attributed to their gender. Men will never be expected to change their names when they marry or questioned should they choose not to. When men read history textbooks, newspapers, popular magazines, and mainstream literature, they find people of their gender widely represented as the majority. Absolutely none of these things are true for women, intersex people, or non-binary or genderqueer people.
And then there is able-bodied and neurotypical privilege, or the privileges experienced by able-bodied and neurotypical people. Able-bodied people never have to worry about being unable to get inside a building or to a specific room or location inside a building. Neurotypical people never have to worry about their competence, intelligence, or character being questioned if they disclose their neurology. Neurotypical people never have to worry about whether their attendance at an event will result in severe detrimental consequences on their sensory systems, emotions, or mental health. Neurotypical people never have to worry about being subjected to orders of involuntary commitment or involuntary medication if they disclose their neurology, and when neurotypical people are accused of crimes, their neurology will never, ever be blamed as a causal or correlational factor in the commission of the crime. When able-bodied and neurotypical people are hired or promoted, their promotion will never be assumed to be because of their body type or neurology instead of their qualifications.
When neurotypical people are upset, angry, or sad, their emotions are never attributed to their neurology, and when neurotypical people make irresponsible decisions, it is never considered a reflection on people of their neurology. When able-bodied people cannot complete a task or attend a day of work or school, it is never assumed that it is because they are not trying hard enough or because they are incapable of succeeding at that particular task or in that particular venue. And when able-bodied people or neurotypical people live completely independently, they are never treated as an exception for people of their body type or neurology or as a credit to people of their body type of neurology. And when able-bodied people or neurotypical people do not live completely independently, they are rarely if ever assumed to be lazy, incompetent, inferior, less-than, deficient, or defective.
These things are not true for those of us who are disabled. It is presumed on our behalf that the goal for our lives should be as much independence as possible with as few supports as possible, including accommodations and services. Yet there is nothing morally wrong or inherently demeaning in living interdependently, whether with fellow disabled people or non-disabled allies. Zoe Gross, a fellow Autistic, eloquently describes the concept of living interdependently in action in her brief essay "Navigation and Disabled Interdependence," written for the American Association of People with Disabilities.
Zoe writes, in part,
Two people with disabilities, one dyslexic and one autistic, walk out of housing check-in for the 2012 AAPD Summer internship. To reach their dormitory, they must correctly choose whether to go right, left, forward, or back, at every intersection along their five-block route. It is dark, it is raining, and they are in an unfamiliar city. They are equipped with a map which one of them cannot read and the other one cannot understand. Given these facts, how long will it take this hapless duo to reach their lodgings? Will they, in fact, ever arrive?I am the autistic person in this scenario. The dyslexic person is Phred, my fellow intern and, because the situation I described proved to be a bonding experience, my new friend. Phred found the map’s small print, and to a lesser degree the street signs, challenging to read. She generally prefers such things in an audible format. For my part, my spatial reasoning is such that I could not successfully extract myself from a paper bag in 4 out of 5 trials....If you emphasize the aspects of our disabilities which cause us the greatest difficulty in our daily lives, you might guess that Phred and I spent that night huddled on the sidewalk, awaiting rescue. If you consider our strengths, however, you might arrive at a different conclusion. As it happens, I am very much at ease with reading words. And Phred, like many dyslexic folks, has a very strong sense of spatial awareness. We quickly found that we could each function as one half of a GPS, and in combination we can be an unstoppable route-finding force.
If you are able-bodied or neurotypical or both, think about the world in which you live. You live in a world where your supports are nearly or completely one hundred percent natural and built-in to your environment and society to the point where you don't notice them, from the way cars and classrooms and offices and chairs and loudspeakers and fire alarms and doorways are designed to the ways you are expected to learn and think and move and clean and study and work. Congratulations, you live in a world that was designed specifically around your support needs so that your supports blend into the milieu of your everyday life with hardly any notice or attention paid them.
Congratulations, you have discovered your able-bodied or neurotypical privilege—or both, for many of you.
In a world built entirely around your thought processes, movements, and physical and emotional needs, it will obviously seem as though most able-bodied and or neurotypical people can live "independently" without visible or conscious supports despite the reality that supports for people with typical abilities and neurologies do exist and are simply naturally embedded in all aspects of society and culture. Thus, it is extremely easy to speak from a position of privilege and assert that the norm or the ideal should be expecting people of divergent abilities and or neurologies to live according to the standards of the dominant non-disabled people. When you demand that disabled people work to pass as able-bodied or neurotypical at the cost of sacrificing supports, services, and accommodations that mark us as divergent from those with dominant abilities and neurologies, you are forcing disabled people to hold themselves to impossible and destructive standards.
To say that the ultimate goal or outcome for a disabled person should be a life with as few supports as possible is to deny the reality of both the disabled person's needs and abilities. In the case of a Deaf person, for example, the ultimate end of that suggestion would be forcing Deaf people to cease to communicate in Sign and to learn oralism even at the expense of comprehension and effective, reciprocal communication solely for the sake of appearing at first glance to fit more neatly and conveniently into the fabric of a majority hearing society without regard for the language and communication that come naturally to the Deaf person.
The suggestion that the ideal outcome for disabled people is a life with as few supports as possible is one deeply rooted in ableist attitudes—namely, the idea that it is bad and shameful and negative and unfortunate and pitiable and tragic to require supports outside the norm or outside of what is typical for those in the dominant group. But what's shameful about having a note-taker accompany you to classes? Or having flexible work hours or a telecommuting option? Or having additional time between tasks? Or using an alternative or augmentative communication device? The only shame and stigma that exist are societal constructs embedded in systemic, institutionalized ableism that colors our attitudes. And if there are shame and stigma attached to having visible or conspicuous support needs, it seems far more logical to combat the attitudes that create this shame and stigma than to urge disabled people with support needs to avoid using any overt or noticeable supports.
The idea that living independently should be the goal of any adolescent or youth is one that creates a culture of exclusion. There is no moral imperative behind this idea, which has its origins entirely in sociological perceptions. We live in a society that idealizes mythical and popular figures whose stories include those of surviving alone in a wilderness, traveling across continents to build their own fortunes, and single-handedly defeating terrible villains. Is it any wonder that we hold the false standard of independent living as the ideal that all people should strive to achieve?
What we continually fail to recognize is that there is both value and dignity in living interdependently—that is, identifying, accessing, and using all avenues of natural and constructed supports necessary to live a life that one finds meaningful, fulfilling, and satisfying. Some people may well require few additional support needs outside the norm. But for many of us, at least some overtly divergent supports are necessary in order to be happy and productive members of society. We should face no shame when we seek those supports, nor should we be made to feel less capable or less competent than our non-disabled peers if those support needs are lifelong or grow in intensity at different periods in our lives.
Zoe puts it well—
When talking about people like Phred and me, “experts” often present dire scenarios in order to prove that we are incapable of living independently. Phred’s and my adventure with the map might even qualify. Some people would say that since we each required some assistance in this scenario, we could not be considered “independent.” However, one thing that we learned during our orientation is that the definition of independence needs to be broadened when discussing the lives of people with disabilities. Instead of asking, “can this person do any and all tasks without help?” we should ask, “does this person have the help that they need to live the kind of life they want to live?”
Interdependent, supported living is natural and normal, and we should be able to take pride in our lives and our existences as they are, without the encumbrance of external and ableist preconceptions, either from others or ourselves, tainting our ability to experience joy, value, dignity, and meaning throughout our lives. The goal for every disabled person should not be a life with few or no supports—rather, the goal for every disabled person should be a life lived in a world that does not devalue, shame, or stigmatize the disabled experience.
* There are other types of privilege, too, such as class privilege (i.e. being of higher socio-economic class), cis(gender) privilege (i.e. identifying as the same gender as the one assigned to you at birth), straight Christian privilege, age privilege, education privilege, citizenship/immigration status privilege, and passing (as a member of any dominant group of which one is not actually a member) privilege, among others. I have chosen not to expound upon every possible type of privilege, but much has been written on this topic and the various types of privilege that people can experience. I also understand that Christians do not experience social privilege in certain parts of the world (such as Pakistan, Iran, or India), and that white people do not experience social privilege in certain parts of the world (such as Japan), but this article is U.S.-centric, as that is the society in which I live and the only one with which I have direct experience.
Excellent point about interdependence, Lydia. I think the goal of "independent" living is not so much to live alone as it is to be empowered to make life decisions.ReplyDelete
A couple of things I noticed along the way: (1) you use the word "race" in reference to "white privilege" and (2) you refer to the "neurology" of neurotypicals.
In the first, my understanding is that "race" is not a valid scientific concept, but an arbitrary social one. Thomas Jefferson's wife was white, but her half-sister, Sally Hemings, was not; she was a slave owned by Jefferson. She was an "octoroon" meaning that one of her eight great-grandparents was of African descent. Just one well-known example of the silliness of trying to define "race"...
"Neurotypical neurology" strikes me as being oxymoronic. Although "neurology" literally means "the study of nerves" its common usage generally indicates the study of neural disorders. (Which is, of course, why I think autism is not a proper subject of study for neurology, but belongs in the realm of neuroscience.) You perhaps are using the word in a more casual sense.
Lydia's usage of 'neurology' strikes me not as casual but as formal, at least in a mathematical sense. For example topology is the study of certain mathematical spaces, the complete formal definition of an instance of which is itself called a topology; likewise, modern abstract algebra defines an algebra over an algebraic space (a ring or a field).Delete
In general, referring an instantiated object of the type studied by a given n-logy field of study as a 'n-logy' seems pretty reasonable.
Great post! I'd just like to add a privilege to the list: thin privilege. I didn't invent this concept. Among other things, thin privilege includes the ability to be considered healthy, competent, intelligent, etc. by others without having to explain or defend herself (or himself). And to people who are going to respond to this with "thinness is a lifestyle/choice," that's simply not the case. Do some research on the subject if you are confused.ReplyDelete
I was going to say a similar thing and was delighted to find someone had already addressed it. Then there are the physical difficulties of being someone of considerable size, as I am. I cannot assume that if I go somewhere there will be somewhere for me to sit (chairs with arms often present considerable difficulty if not impossibility). I can't walk into just any store and find clothes to fit. When a friend drove his Mini Cooper to visit me, I had to drive my car when we decided to go out because I couldn't fit in his. And while perhaps I could reduce my size, I can't snap my fingers and have it happen instantly, so for now, the only moment we have, being of average size is a privilege.Delete
Awesome post Lydia. I basically want to print out most of this and stick it on a wall somewhere.ReplyDelete
I actually think, for most of us, that this ideal of "independence" is a myth. For example, many people marry someone else who can cook due to their lack of cooking skills. The net result: *two* people eating good food instead of one, but somehow the non-cooker escapes the label of "not living independently".
I don't mean to downplay the more serious challenges faced by others, more to point out that some "inabilities" are not stigmatised to the same extent. And the difference seems really to be just one of how common the lived experience is.
Interdependence should really be the norm, not an exception. That lack of reliance on each other is one of the sad things about losing the old village community lifestyle.
If you stick it on a wall somewhere, can you send me a picture? :)Delete
Excellent exploration, Lydia. The idea of independence is wrapped up in our idea of parenting, too. We already have the cultural theory that we "built this" by ourselves, when, really, generations have already paved our paths, others helped, environment supported us, etc. Our American idolization of independence says that to achieve success as a parent means raising an independent child. Which reaches all the way into the cradle, pushing a baby to be independent in sleep and emotions and support LONG before she is ever ready. The consequences are deep.ReplyDelete
Great post, Lydia. I'd like to add to the myth of independence -- "capacity" and "productivity," and further explore this with others. Estee Klar (www.esteeklar.com) Joy of Autism.ReplyDelete
You addressed privilege quite nicely, but you still need to do another post to fully cover what she emailed you about (unless you did one covering this part already). You haven't said anything about how she clearly doesn't understand what a "support" is, how she uses them (or is dependent on their availability) every single day (possibly even every single moment), and would literally be unable to survive in her own house without those supports in place.ReplyDelete
In general, in the US, people are more dependent on the infrastructure of culture than ever before. There was a recent article in time magazine on the dependence of being connected in a wireless world, and as polled the perception among some was they could only do without their smart phones for a few hours.ReplyDelete
Human beings are social animals, and by very nature live interdependently. Cultural Infrastructure provides accommodations to allow people to accommodate this natural dependence. But, on the other hand Cultural Infrastructure can be a source of effective disability, as the level of abilities that are required without it are lost when they are not practiced. This is an issue applicable to most everyone. It becomes much more visible when a natural disaster occurs and those elements of accommodation provided by cultural infrastructure are removed from the equation. Living through a Hurricane that destroyed cultural infrastructure, including cell phone towers, electricity, and bridges, exposes the effective disabilities that are acquired through cultural infrastructure.
I couldn't agree more with the myth of independence, but I take some disagreement to some of the generalizations that were described as absolutes about men and Christians, particularly the one that imply that women can not walk alone not afraid at night, and that Christians are not criticized by the actions of a few in their group; there are more than a few areas on the internet, where the mention of Christianity brings hatred from other groups that are not Christian, directly associated with the acts of some identifying themselves as Christian. The internet is part of virtual life now, that creates a different playing field for many of the old stereotypes of privilege for identified groups of human beings.
And while not all women can and do walk unafraid at night, some can and do walk unafraid at night.
There are too many exceptions to generalizations to provide absolutes for the subjective experience of human beings based on gender, sexual orientation, color of skin, religion.
I think a discussion on the concepts of able bodied or neurotypical requires a definition of what is considered able bodied or neurotypical, to clarify if one is talking about fitness levels and body fat/type opposed to legally defined physical disabilities; or migraine headaches and epilepsy as opposed to everyone without a diagnosis of autism. The majority of the American public has no idea, specifically, what is intended by the term neurotypical, if they have come across it, but many would likely look at the word at a glance, as typical or normal neurology, which would not necessarily define one that has migraine headaches or epilepsy or hundreds of other neurological disorders that are associated with atypical neurology.
I don't think the term is well enough identified or understood, to make a generalization of what or what might not occur if someone identified themselves as neurotypical, as it is usually used and defined within the confines of the autism community and among those that are specifically discussing it. Of course, it's not as much of an issue if one is only attempting to communicate with the Autism Community among those that are more familiar with the term. But, I've seen neurotypical defined in several different ways, in the autsim community, some definitions that exclude people with schizophrenia, ADHD, Bi-Polar, etc.
This is almost my exact conclusion in Part 2 of my thesis... which ties into the need of lifting up and exploring the theological perspective when discussing models of disability. If anyone is interested in this type of discussion, please visit: http://faithfulneurodiversity.ning.com/forum/topics/thoughts-on-the-different-models-of-perceiving-autism-and-its-impReplyDelete
Lydia, since we previous talked about the need for a theological investigation, I hope you don't mind me placing this link here for others to join the convo!
Great post! I really enjoyed reading your post yesterday about privileges and interdependence. It made me think of the definition of privilege, the principle or condition of enjoying special rights or immunities. I read your blog and the definition through a few times and thought about something I would like to write about on my blog. Privileges are granted to specific people, but that does not mean someone is more special than the next. I have written about Interdependence being more important than anything else. There are times when we are independent, but a lot of the times we need others for support. I think it's more about how every one needs to feel connected in some way to help support each other. I liked the way you talked about the key privileges affecting your life. Good Job with your post!ReplyDelete
Lydia, this is really brilliantly expressed. I'd add, too, that the notion of "independence" is a historically specific, modern and western one. It's an ideology more than a practice. Scratch the surface, as many have noted, and interdependence is standard. The kinds and the extent of support we get over their lives shifts according to all manner of things--their culture, their religion, their own family's traditions, etc. I don't really want "independence" for either of my two children, wither my autistic son or my NT son. I want for them the kind of support that is most appropriate for the goals they want to achieve.ReplyDelete
I couldn't agree more about this post regarding independence. I'm autistic and I attend college. Interdependence is not stressed enough since our society favors independence. Being a high-functioning autistic, people have high expectations for me to become independent since I have proven myself capable. Yet there are many things in my life where I need support. For instance, I don't drive and I can't put my own hair back in a ponytail because of my motor problems. In both of these cases, I need support otherwise it would be hard to do things or get them done if I were completely independent. I shouldn't feel shame because I need to ask other people for help from time-to-time. It seems that once you get into college you're expected to be independent. There should be nothing wrong with having specialized supports and services that are different from what neurotypicals have like having an aide accompanying you to class because you are having a bad and you cannot keep it together in class or not taking a full load of classes because you can't handle the stress of having a lot of homework . I also liked at the end of this post it mentioned that in certain times support might need to be increase depending on the situation. It is important to be independent in terms of having your own thoughts but in terms of everyday life in general interdependence is the key for individuals with autism to live happy productive lives and reach their full potential.ReplyDelete
Another thing to bear in mind is that Western societies, and the United States in particular, tend to moralize autonomy, which is not the case in many other cultural contexts. There's an interesting body of literature on this phenomenon in cultural psychology and sociology.ReplyDelete
I am a supposed NT working in an SpLD/MLD educational environment within the UK. This was an interesting and challenging post with comments which I hope are widely read.I am not personally shy of admitting interdependence or privilege,however, the fallacy of personal independence as the embodiment of success remains undoubtedly the fictional state that is driven toward and, even when not clearly voiced is the subliminal message within our education systems. No wonder people grow with feelings of inadequacy, exclusion and under privilege.ReplyDelete
While I am ECSTATIC to have found your website & generally agree with your thoughts, I'd like to point out that we (Christians) ARE (to some extent) portrayed in a less than positive or friendly light. The mass media seems (in my opinion) to only mention the word "Christian" in a news story if it involves an angry protest or an anti-LGBT initiative.ReplyDelete
PSA TO AMERICAN PUBLIC: WE DON'T ALL HATE LGBT+ PEOPLE. In fact, some Christians SUPPORT/IDENTIFY AS LGBT+.
We're not all angry either. Those are just the soundbytes that get people talking. So it's what's focused on.
Honestly though, thank you so much for your writing. As a bisexual disabled Christian, it's nice to know that I've found a truly inclusive space both here & on Tumblr. A note about your list of ableist terms. I think it's great you've created such an expansive list. Because the more we educate people the better. However, I believe some of them really depend on who you're speaking to as to whether or not they are offensive. For instance, I've never been offended by the terms "special needs", "physically challenged" or "differently abled".
Not sure what straight Christian means, but I'd like to point out the privilege west Christians have against the eastern ones, especially against old calendarists. Privileges can get broken down to the moment where they're almost meta.ReplyDelete
I find it hard to explain that to people from the country where Christian often means something bizarre, backwards, conservative and whored around in media. :)
Yes, absolutely. This post itself is centered on the experiences of people growing up in the United States or Western Europe, and (without re-reading it in its entirety) probably doesn't acknowledge that whether or not Christians experience privilege often depends on which context we're discussing and which kind of Christian they are. For example, Christians do not experience privilege in North Korea or Pakistan or Israel. Writ large, Christians in general experience privilege within United States, but Christians from most protestant traditions probably experience the most privilege in the U.S. context.Delete
Perhaps passing should not be labeled as privilege. It involves trying to gain/maintain the privilege of another group. It can be quite stressful, pretending to be straight/neurotypical (or to follow another religion) out of fear of persecution.ReplyDelete
Also, I would define interdependence as a form of independence( Person A and Person B are interdependent, able to successfully navigate the neurotypical world.), rather than a form of dependence(Person C is an independent, neurotypical person, and Person D, their sibling[who they may or may not get along with] is their dependant; Person C, purely out of the goodness of their heart, has yet to dump Person D in an institution.).
With this definition, interdependence is really collective independence.ReplyDelete
Even with privileges, living independently is a challenge to many. The problem is that the further a person is from being independent, the more likely the person is to be finding self in dire straits It's difficult to find partners to pool resources and for most, parental resources will run out with death, disability, retirement of parents and other loved ones. To end up in dangerous, dirty, inadequate circumstances is a true fear. Those who qualify as disabled actually might find some ear marked resources that those who cannot be so qualified cannot. This is a real problem in our society; adults who cannot take care of selves.ReplyDelete