(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.
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.