23 August 2012

Privilege and the Myth of Independence

(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 timeand continues to be heldas 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.

22 August 2012

First Steps to a Disability Cultural Center at Georgetown!

For those of you reading this page from Georgetown University or nearby, we will be holding the first information/interest meeting on Wednesday 12 September 2012 at 7pm in the ICC, room 204-A. Here is the flyer! (PDF file, should be compatible with screen readers) Please share the link wherever you can.

Disability is one of the seven identities included in discussions about diversity, but it is not well represented at the administrative level on campus. Existing student organizations (DiversAbility, Best Buddies, Active Minds), as well as the Academic Resource Center and the GU Center for Child and Human Development, offer only limited engagement on disability issues and frequently operate as silos.

DiversAbility focuses primarily on promoting disability awareness for students; Best Buddies facilitates relationships between students and community members with developmental and intellectual disabilities; Active Minds promotes conversations about mental health disabilities and students; the ARC facilitates academic and housing accommodations for students with disabilities, and sometimes provides programming around academic support needs; and the GU-CCHD is primarily a community outreach center and research institution that engages very little with the folks on campus. There is no unifying, administration-funded and student-supported center that exists both to support and empower Georgetown’s disability community writ large.

A Disability Cultural Center would provide the unifying, central point on campus for all disability-related coursework, student organizations, administrative offices, research initiatives, and community outreach. It provides both social and academic programming to all community members in the context of a disability rights activism movement and a disability studies interdisciplinary scholarship in order to create a culture of inclusion and provide a safe space for disabled Georgetown community members and allies to have meaningful and necessary conversations. A DCC would serve as a resource and support for students, faculty, and staff with disabilities as well as interested and allied community members.

Additionally, the first university to have a DCC was Syracuse University, which has traditionally been our rival. The second in the nation will be opening at the University of Washington—Seattle this November. With our emphasis on social justice and empowering marginalized communities, it makes sense that Georgetown should establish a DCC.

15 August 2012

If you're not uncomfortable, I'm not doing my job.

If you're not uncomfortable, I'm not doing my job.

I'm not here to reassure you that you're okay, that you're not one of them, that you're not that kind of person. I don't write to make you feel good about yourself, and I certainly don't write to stroke your ego. I don't write because I want people to think well of me, and I don't write because I want to make excuses or amends. I don't write because things are good and happy and positive, because frankly, they’re not. I don’t write to reassure you of your own safety in privilege, and I don’t write to appease you or anyone else. And if your feelings get hurt because I’ve spoken truth, then that’s your problem.

Let me be perfectly clear.

I write because my voice is necessary and valid and legitimate. I write because I need to agitate you. I write to shout from the rooftops that I’m here and I have a voice and my voice and hands are loud. I write because ableism, paternalism, infantilization, murder apologetics, and de-legitimization must be called out wherever and whenever they happen. I write because sitting passively while my people are dying and languishing in institutions just isn’t my style. I write because I am compelled to shout for justice for my people, and I write because that is the only medium in which I can have full freedom of expression to share my rage and my tears and everything that I am and feel and drown. I write because I don’t have the power and privilege to speak my voice in any other medium without fear of shutdown and de-legitimization and silencing.

My voice is my own, and you cannot and will not silence me or keep my words from mattering. My voice matters and I matter. And I am as I am, not as who you’d like me to be or who you pretend that I am or who you wish I could be in some fantastical dream of yours. My voice is unencumbered with the weight of dishonesty or false courtesy or sugar-coating or mitigation. My voice is mine alone.

I am not yours to appropriate in a condescending, paternalistic shut-down of other Autistic voices. I am not yours to commandeer as an example of what you want from Autistics while you use your voice to silence so many necessary and vital Autistic voices. I am not yours to label and put on a pedestal for your own contrived purposes, and I am not yours to use as a token of your supposed respect for those of us who are willing to push the boundaries of radicalism and revolution.

I don’t write from a place of hate—I write from a place of truth and justice; I ache and lose sleep and spoons every day as I thirst for justice and redress for my people. I write because I want to live in a world that is more just and equitable for disabled people like me. I write because I want to live in a world where disabled people have the same access and opportunity as anyone else. I write because ableism is so rampant in the world in which we live now that not writing would not merely do a great disservice to other disabled people but would make me complicit in the perpetuation of ableism in policy and in practice against our people.

If you want to call me hateful, go ahead; you have the right to do that. If you want to call me bigoted, go ahead; you have the right to do that. If you want to call me unreasonable or irrational, go ahead; you have the right to do that. For that matter, go ahead and call me an extremist, call me the fringe, call me delusional or uneducated or ignorant or naïve or whatever other pejorative suits your fancy, because you have the right to do that. But you should know that every time you attack my character and my integrity with your pejoratives cleverly disguised as respectful disagreement, you are silencing my voice. Every time you slander my name and insult me instead of engaging directly and meaningfully with the content of what I write, you demonstrate enormous disrespect, flagrant disregard, and egregious insensitivity to the consequences of what it is that you are doing.

I don’t write to make you comfortable. I don’t write to preach to the choir. If I’m not challenging you, if I’m not calling you out, if I’m not agitating you; if I’m not bringing you to the edge of your seat with white knuckles, bright eyes, and quick breath—then I’m not doing my job right. The moment I slip into complacency, into appeasement, into smiling and nodding as injustice occurs beneath my nose—when that happens, let me be damned. I will not stop writing, I will not stop speaking, I will not stop condemning injustice and ableism when they happen simply because you think you can silence me by calling me hateful.

You might as well come out and say what you really mean—you are afraid of me and you are afraid to hear the truth, as raw and painful as it can and often must be. You are afraid that if you don’t distance yourself from me, you too will be viewed like me, and you too will face silencing and de-legitimization. And so you will bring those tactics to bear against me before it happens to you.

I don’t write to be liked or praised. I write because I have something to say that needs to be said.

12 August 2012

Disability in an Ableist World

Disability as a constructed concept is not a commonly understood or propagated idea in the mainstream of an ableist society. The average non-disabled person, and frequently even disabled people who’ve had limited or no exposure to disability rights theory or disability culture, does not understand disability beyond something that happens to other people, thereby rendering them tragic objects of pity, scorn, and charity. The general understanding of disability among those whose professions and research lie in the long-established fields of health sciences, rehabilitation sciences, special education, and abnormal psychology is one of a highly and often exclusively medicalized model that understands disability as a pathology in need of treatment, remediation, rehabilitation, and mitigation.

For theorists in the emerging interdisciplinary field of disability studies who are increasingly disabled themselves, there are two foundational understandings of disability—essentialism posits that disability is inherent to the person, whether innate or acquired, while constructivism posits that disability is a social construct and exists only because of sociological, cultural, or political factors. Those who understand disability as a medicalized phenomenon through the lens of an exclusively biological or psychological model of disability are essentialists. Those who insist that there is no such thing as disability or that everyone is disabled in some way are frequently constructivists.

But it cannot be denied that disabled people of any particular disability or condition do have inherent differences from nondisabled people or people with different disabilities. The Autistic brain is different from the non-Autistic brain; those who are Deaf or Blind perceive the world in different ways than those who are hearing or seeing; those who use wheelchairs move differently than those who have no need to use wheelchairs. These differences are real, and the differences are certainly not social constructs. Thus, constructivism does not adequately address the lived and inherent neurological, mental, emotional, and or physical differences that disabled people of any particular group have from those outside that group.

Yet essentialism discounts the roles that lived experiences, attitudinal biases and prejudices, policy and systemic barriers to access, societal ableism, constructs and representation of disability, and hate crimes play in the lives and shared experiences of disabled people across all sectors of society. Essentialism does not address the systemic denial of equal access and opportunity for disabled people in education, housing, community and social life, healthcare, employment, and policymaking. And it certainly fails to consider the consequences of rhetorical and discursive constructions of disability and the disabled experience.

Disability is far more complex and nuanced than either pure essentialism or pure constructivism are capable of adequately conveying. The experience of disability, of being disabled, arises when a person whose neurological, mental, emotional, and or physical differences are atypical and divergent enough from the neurologies and physicalities of the majority so that this person is forced to exist and live in a society and world not constructed to incorporate natural supports and full inclusion and access for people like this person. That is, the experience of disability and being disabled is the result of the interaction of a person’s inherent differences with a society and its attitudes and policies.

On the Massachusetts island of Martha’s Vineyard, it used to be that a significant percentage of the island’s population were deaf until the mid-twentieth century.[i] As a result, nearly all residents learned Sign language from an early age, whether they were Deaf or hearing, and easily switched between signing and speaking without much effort or thought regardless of who was present in the conversation. Today, there are no longer any Deaf people born into the signing tradition living on Martha’s Vineyard, yet elderly hearing islanders continued to communicate in Sign language as late as the 1980’s.[ii]

In communities where everyone or nearly everyone shares the same sensory, physical, cognitive, or emotional experiences, such differences that might in mainstream society be considered to be deficits or disability are not, in fact, disabling at all. While divergent and diverse neurologies and physicalities exist in nature and in isolation of cultural, sociological, historical, and political context, disability does not exist in the absence of a society’s rhetorical and discursive constructions of it that create attitudinal, systemic, and institutionalized barriers to access for those whose neurological and physical variances are atypical.

In order to fully understand disability and the disabled experience, and in order to effectively and meaningfully advocate for attitudinal and systems changes that will lead to equal access and opportunity in a more just and equitable world for disabled people, it is imperative to both examine and challenge the common rhetorical and discursive constructions that posit disabled people as the Other and disability as a pathology, while at the same time suggesting a radically different construction and understanding of disability and the disabled experience as natural and normal parts of the human experience.

Disability has historically been understood in the paradigm of a strange and alien other, as evidenced by the sterilization and eugenics movements targeting the disabled for fear that we might bear disabled children and perpetuate disability. Even today, disabled people who wish to kill themselves are more frequently praised as brave and courageous, and offered the option of euthanasia, while non-disabled people who express the same suicidal ideations are referred to anti-suicide counseling and support.

The lives and humanity of disabled people are routinely questioned not merely by the supposedly objective and well-meaning professionals hailed by the public as experts on disability, but also by the mainstream media. Disabled people face prejudices and attitudinal barriers such as the presumption of incompetence, infantilization, dehumanization, the belief that disabled people are incapable of being sexual beings, paternalism, and the prevailing assumptions that our lives are tragic and that it should be normal for a disabled person to seek to be cured of disability. We are frequently assumed incapable of having opinions or directing our own lives, treated as children even when we are adults, denied access to basic healthcare or education, deprived of accessible or meaningful sex education or even the opportunity to form romantic relationships, treated as though our opinions and ideas have no value, and discussed as though we are not present and cannot be.

Our experiences and lives are usually described through a paradigm of grief, pity, shame, scorn, tragedy, and fear. Our non-disabled parents are taught to mourn their disabled children’s existences and to wish for their children to be cured. Our neighbors are taught to pity us, and our families are taught to be ashamed of us. Youth who believe that their intentions are good are taught that our lives are inherently tragic and that they should be afraid that more children will be born disabled if they do not contribute money to charities working frantically to eradicate disability. If media portrayals and representations of disabled people are to be believed, we are incapable of living full, rich, and meaningful lives, and we remain perpetual children regardless of biological age. Society teaches the non-disabled to fear and pity us, and it teaches us to be ashamed of and hate ourselves.

The concept of disability pride, which has existed for decades in an organized fashion, is revolutionary in its biting response to the paternalism and discursive constructions of disability popular in our society. The idea that people with deformities, people with visible physical disabilities, and people with neurological or mental disabilities are capable not merely of accepting themselves but of publicly proclaiming their pride in being disabled is anathema to a society in which deviation and divergence from neurological and physical typicality is labeled pathology and defect. Yet it is a necessary idea, because we who are disabled must continue to reassert our necessary presence in shattering old rhetorical and discursive constructions of disability while creating and perpetuating new ones.

Without significant changes in societal and individual attitudinal barriers to access, there will be no meaningful systems change, no changes to policies and institutions that create further barriers to equal access and opportunity and full and equal participation in all facets and aspects of life. Few outside the disability community ever consider the consequences of their perceptions and limited understanding of disability, and many whose views are shaped by unsound and dangerous ideas continue to perpetuate ableism without ever having their privilege challenged and examined. Disability exists because we are largely complacent in allowing ourselves and our society to perpetuate a world where disabled people are marginalized and oppressed by attitudinal and systemic barriers to access.

We need the concept of universal design to move from small academic circles and pilot programs in public schools to a foundational principle of all aspects of life, culture, and society. We need to incorporate the language of the Developmental Disabilities Act, which describes disability as a natural part of the human experience, into our fundamental attitudes and everyday practices. We need to stop using language that marginalizes and oppresses and begin to craft rhetorical and discursive constructions of disability that recognize our innate ability to lead full, rich, and meaningful lives as disabled people across the lifespan. We need to stop medicalizing and pathologizing every characteristic belonging to disabled people, and begin to address the problems and deficits in our society and its institutions and policies rather than looking to problem-find in the disabled person. We need to stop presuming incompetence and dehumanizing disabled people, and begin to presume competence and recognizing the innate humanity and equal quality of life of all human beings.

We need to build a world in which all supports are natural supports provided unquestioningly, without the feeling of legal or contractual obligation, but because of a sense of human dignity and decency, and where those supports are not viewed as accommodations for a standard system but natural and normal facets of a universally designed system. We need to educate young students, young researchers, young clinicians, young educators, and young service providers about the diverse and rich history of disability cultures and communities in the context of a disability rights activist movement and a disability studies interdisciplinary scholarship, and we need to encourage and support young disabled people to empower themselves and their peers to demand equal access and opportunity and full and equal participation and inclusion. We need to educate our children and youth about disability as diversity, and we need to incorporate our history into mainstream history.

Ultimately, we need to challenge the constructions and institutions that continue to perpetuate ableism across all facets of society, and we need to promote this radical notion that disability is natural and normal—not something to be feared or pitied, but something to be welcomed and proudly proclaimed.



[i] Groce, N. E. (1985). Everyone here spoke sign language: Hereditary deafness on Martha's Vineyard. Cambridge, MA: Harvard University Press.

[ii] Sacks, O. (1989). Seeing voices: A journey into the world of the Deaf. Berkley and Los Angeles. California: University of California Press.

11 August 2012

Anatomy of an Inane, Insipid Facebook Comment War

I love my Facebook friends.

The following is the anatomy of your generic inane, insipid Facebook comment war. It's sad, but oh so true. This is what happened on one of my Facebook status updates today:

--

Lydia Brown
6 hours ago via mobile ·
‎~generic political rant status~
5 people like this.

Andrew 1
‎~generic controversial comment that starts a debate~
5 hours ago · Like

Rachel
~generic statement of I hear you and share your angst about whatever it is~
5 hours ago · Like

Alyssa
‎~generic first angry comment about the controversial one~
5 hours ago · Like

Rachel
‎~generic comment about how the previous commenter just seriously pissed me off~
5 hours ago · Like

Alyssa
~generic ad hominem attack at previous commenter over the fact that I pissed them off~
4 hours ago · Like

Rachel
‎~generic plea for civil discourse to previous commenter who launched generic ad hominem attack~
4 hours ago · Like

Alyssa
‎~strangely listens to plea. Now responds with generic 500 word essay explaining point by point why the controversial statement is WRONG.~
4 hours ago · Like

Rachel
‎~tries to read generic 500 word essay but eyes roll back in head and disorientation sets in~
4 hours ago · Like

Alyssa
‎~interprets this as winning~
4 hours ago · Like

Rachel
~issues generic statement that non-engagement is not the same as concession, but suggests that previous commenter is welcome to that illusion if it helps her feel better~
4 hours ago · Like

Andrew 1
‎~generic statement about how disappointed I am with how my statement started a mean argument~
4 hours ago · Like

Andrew 2
‎~generic statement ostensibly agreeing with original post but in fact completely misconstruing and twisting the point ~
4 hours ago via mobile · Like

Rachel
~generic statement attempting to clarify the issue while laboring under the illusion that clear, direct argument will be effective on a Facebook thread~
4 hours ago · Like

Sarah
~generic random comment completely unrelated to the post~
3 hours ago · Like

Alyssa
~explanation of why misconstrued post is also wrong, again as 500 word essay~
3 hours ago · Like

Rachel
~generic expression of guilt that I should be reading a 500 word essay but just.... can't~
3 hours ago · Like

Andrew 2
‎~generic statement vainly trying to process clarification while demonstrating various flavors of gross insensitivity to the nuanced subtext of the political perspective, probably occasioned by over-reliance on news spin from a specific cable network~
3 hours ago via mobile · Like

Rachel
~generic statement of profanity at mention of specific cable network, followed by generic apology to Lydia for generic statement of profanity~
3 hours ago · Like

Alyssa
‎~500 word rant about why said cable network is HORRIBLE, probably including ad hominem attack towards anyone who watches it~
3 hours ago · Like

Andrew 2
‎~generic statement perhaps attempting to backpedal out of untenable position but ultimately flailing about with half-baked bromides that writer wishes were viable intellectual positions, in the process further demonstrating ignorance, unexamined privilege, and entrenched insensitivity~
3 hours ago via mobile · Like

Kelly
‎~generic interjection of sympathy, including religious statement and blessing, and disregarding all other comments.~
23 minutes ago · Like

Erin
‎~generic random and totally unrelated comment intended to elicit an amused response~
6 minutes ago via mobile · Like

Kelly
~generic acknowledgement of being amused by the above comment.~
2 minutes ago · Like

Alyssa
‎~generic expression of anger about the derailing~
A few seconds ago · Like

02 August 2012

How to Talk to an Autistic Adult

  1. You are speaking to an adult. Do not use a baby voice.
  2. Do not ask where the adult's parent, caregiver, personal assistant, or staff person is. This person is an adult and will not necessarily be accompanied by someone else.
  3. Don't assume that the adult is ignoring you if he, she, or xe isn't looking at you or making eye contact.
  4. Don't assume that the adult is ignoring you if he, she, or xe is looking at a phone, an iPad, or elsewhere in general.
  5. Don't assume that the adult isn't hearing what you're saying if he, she, or xe doesn't give you "yeah," "uh-huh," "mm-hmm," etc. responses while you are speaking.
  6. Pause when you're done talking long enough for him, her, or xir to begin speaking or typing.
  7. Be cognizant that the adult may have cognitive processing delays, and give him, her, or xir extra time to process what you're saying and formulate a response.
  8. If you are speaking to an alternative and augmentative communication user (i.e. an adult who communicates using picture cards, signs or symbols, a letter board, or by typing), give him, her, or xir even more extra time both to formulate responses and to produce them. AAC takes longer than speaking, so make sure that the adult is actually getting equal time to "speak."
  9. If the adult has a personal assistant, caregiver, parent, or staff person accompanying him, her, or xir, do not speak to the Autistic adult through the other person or ask that person questions about the Autistic adult. Address the Autistic adult directly.
  10. If the adult has a service animal, such as a dog or a cat, do not touch, call to, or make sounds at the animal without explicitly asking the owner for permission.
  11. Don't feel awkward or rude if you're looking at the Autistic adult's eyes or face and he, she, or xe isn't looking at yours.
  12. Don't ask him, her, or xir personal questions, such as those related to his, her, or xir health and wellbeing, sexual life, or finances that you would not ask a nondisabled adult of similar acquaintance.
  13. Don't ask an Autistic adult what he, she, or xe does or where he, she, or xe went to college, because a disproportionate number of Autistic adults are unemployed, underemployed, and or denied access to college. While there are many Autistic adults in meaningful employment and who are in or have completed postsecondary education, there are many more who are not yet, and asking this question can create awkwardness and tension.
  14. If you happen to be talking about relationships, romance, or sex, don't assume that the adult doesn't or has never had a relationship or sex. While many Autistic youth are denied access to sex education, the diversity and wealth of sexual experiences and romantic and sexual relationships that Autistic people have had are equal to the diversity and wealth of sexual experiences and romantic and sexual relationships that non-Autistic people have had.
  15. If you happen to be talking about parenting, don't assume that the adult isn't a parent unless he, she, or xe has already told you that he, she, or xe isn't one. Many Autistic people also have children. (Sometimes, their children are Autistic as well.)
  16. If you need to ask the adult a question, try to make the question as specific as possible. Broad, generalized, and vague questions are cognitively inaccessible to many Autistic people.
  17. Don't yell, scream, or shout at the adult. Loud voices can trigger panic attacks and extreme anxiety.
  18. Don't stare at the adult if he, she, or xe is stimming -- fidgeting with an object or hair, flapping the hands or arms, pacing, making noises, spinning, rocking, etc. -- and don't feel awkward about it, either. This is normal and natural behavior.
  19. NEVER tell an Autistic adult to have "quiet hands." Ever.
  20. Don't tell an Autistic adult that he, she, or xe is wrong about what he, she, or xe is thinking and feeling. That's called gaslighting. He, she, or xe knows him, her, or xirself best.
  21. If an Autistic adult refers to him, her, or xirself as "autistic," don't correct him, her, or xir and say that that's disrespectful or offensive, and that the adult should be saying "person with autism" instead. Everyone has the right to identify however they wish.
  22. Don't use the word "retard" or "retarded" in the adult's presence. Too many of us have been bullied, silenced, and attacked with this word to ever make that okay.
  23. If the adult tells you that he, she, or xe needs to leave an area to continue the conversation, listen and do it. The location may be causing sensory overload, anxiety, spoon loss, or other barriers to effective communication.
  24. Never touch an Autistic adult without asking first, unless he, she, or xe initiated (i.e. by reaching to hug you or offering a hand for a shake). If the adult doesn't initiate, ask, "do you do hugs?" or similar.
  25. Don't feel awkward if the adult seems to change the topic of the conversation suddenly. You can always suggest going back to the original topic if you still want to discuss it -- though if the adult tells you to drop a topic, drop it.
  26. You are speaking to an adult. Speak to him, her, or xir with the same vocabulary, tone of voice, and type of conversation that you would with any other nondisabled adult in a similar situation or of similar closeness or acquaintance.