Michael Warner notes that here in the U.S. “[being] normal probably outranks all other social aspirations” in the Disability Studies Reader. I know I often want to fit in with my communities and participate.
But does this desire to participate also force conformity and exclusion? Through seeking “normalcy” does U.S. culture also diminish and stigmatize those who do not fit the traditional ideas of “being normal?”
It probably doesn’t take you too long to think of how true this sentiment is, that our “culture of normalcy” demands people to meet many unrealistic expectations. In addition, those who have this view also believe everyone wants to meet the norm and if they don’t meet it, must be “suffering” or have a “difficult life.”
This directly connects to ableism, which is the idea that what a person can achieve or their ability to live a fulfilling life is determined by their disability. Thus anyone who is disabled lives “less of a life” than those who are nondisabled.
In particular this “culture of normalcy” perpetuates the oppression of disabled communities by “othering” people and viewing them as individuals outside the norm.
Changing our language (e.g. saying “people with disabilities” instead of “disabled”) means little if we resist changing our actions, institutions, and broader culture.
I’m going to look at what some incredible activists point out as the core attributes of this “culture of normalcy” and what we can do to promote a new narrative of disability that seeks justice and inclusion of difference instead of trying to force assimilation/conformity.
Ok, so I still don’t quite get what “Normalcy” is…
Well below I’ve got a list of the core attributes of our “culture of normalcy” and how it contributes to negative actions and injustice. So let’s go ahead and get started!
The “Culture of Normalcy…”
Creates the illusion that a “normal” way of living/acting/being actually exists
What’s considered “normal” today is completely different from the norm 100 years ago and even just 10-20 years ago. It will also continue to change.
Lennard Davis notes that “[normal] is a configuration that arises in a particular historical moment. It is part of a notion of progress, of industrialization, and of ideological consolidation [of power].” This means, our definitions of normal support those in power and the dominant worldview, rather than being based in any intrinsic attributes.
Human difference is so vast that it’s impossible to say there’s only one way to live/act/be in this complicated world. This is one reason we have so many attitudes of ableism (i.e. oppression towards those with disabilities), heteronormativism, and sizeism (i.e. oppression towards those of certain body sizes).
For example, many in the Deaf community view themselves as part of a linguistic minority rather than having a “disability.” These communities note that they don’t feel “cut off” from the rest of the world, but rather just speak a different language.
We must NOT deem any life “abnormal” just because they have a different way of learning, communicating, or moving.
Forces compulsion to be “like everyone else”
If an individual or group is different in some way, then I see so many examples of people wanting to “help” them “fit in.” Why can’t they just fit in by being who they are?
One common sign of this is for school photos that involve students in wheelchairs. Parents or staff will often setup photos so that they hide the wheelchair and, thus, makes the kid seem “normal.”
It seems to me that this is clearly about making everyone else more comfortable, not to make the student feel more included.
If our society didn’t have such a fear of difference, then it wouldn’t matter whether someone used a wheelchair, communicated differently, etc. or not.
To continue the example in the last section about Deaf communities, U.S. society has often forced the Deaf to not learn sign language and communicate “normally” (e.g. which has some similarities to how the U.S. forced Native Americans to speak English and not speak their tribe’s language).
So whether it’s with the “helpful” mindset or through force, the “culture of normalcy” makes some think they have a duty/responsibility to make every “fit in” even if they just included them as they are, then they wouldn’t need to do anything else.
Puts emphasis on people to “overcome a disability” rather than seeking societal changes
How many stories do you hear about people with disabilities who “overcome their disability” and are considered heroes? What does that mean?
Does it mean they are a “hero” because they are now “like everyone else?”
The phrase “overcoming a disability,” Simi Linton notes in Reassigning Meaning, puts a huge emphasis on the disabled to work harder rather than focusing on what our society needs to do to change.
This also steers those with disabilities to internalize oppression by thinking they must “do more” to “overcome their disability,” even if that shouldn’t be the message we send.
I’ll look more in-depth at some of the societal changes we need to push for, but for now just remember how the phrase “overcoming a disability” makes people feel OK about accepting the status quo. Instead, we still have a long way to go before reaching a truly inclusive society.
Makes people believe that everyone wants to be “Normal,” because their life must be full of suffering
Marsha Saxton in The Disability Studies Reader writes “the stereotyped notions of the ‘tragedy’ and ‘suffering’ of ‘the disabled’ result from the isolation of disabled people in society.”
Marsha Saxton goes on to write that impairments (e.g. mental or physical) are an inconvenience, however “It is discriminatory attitudes and thoughtless behaviors, and the ensuing ostracism and lack of accommodation, that makes life difficult.”
These statements highlight that most people with disabilities suffer most because of oppression, discrimination, and lack of opportunities. Even those with painful disabilities would be better served if people focused less on their pain, and how to treat them as human.
Still a little unsure how our “culture of normalcy” shows up in society? Well continue on to the next section to clearly see how it shows up on all facets of life.
Institutions perpetuating disability/normalcy
The Medical Industrial Complex
The Medical Industrial Complex (MIC) is the complex multibillion-dollar interconnected relationships among the health industry, including:
- Nursing homes
- Insurance companies
- Drug manufacturers
- Hospital supply and equipment companies
- Real estate and construction businesses
- Health systems consulting and accounting firms
You’ve probably heard about how the corporatization of medicine has led to skyrocketing profits for the MIC, drug companies suppress negative results of drug testing, and corporate lobbyist continually pressure doctors to use their drugs.
But have you heard as much about how the MIC enforces our “culture of normalcy” and stigmatizes those with disabilities?
Doctors, psychologists, and others are just as caught up in the idea of what is “normal” as the rest of us, and thus, enforce those standards by saying anyone who doesn’t fit in the box must be “abnormal” and need “fixing.”
For example, Mia Mingus writes about her experience being forced as a child to wear a brace against her will so she would walk “normally.” She writes that “For me, my brace represented the medical establishment’s grubby little hands on my body, forcing me to adhere to a standardized, able bodied norm of how bodies are supposed to be, look, act and move.”
Also, there is an increasing diagnoses of “mental illness” even though there is no basis for what a “mental illness” really is or that the MIC “identifies” it at higher rates among poor communities of color.
So if someone appears to act, communicate, or move other than our “normalized” ideas, then the MIC immediately steps in to “correct” the disability, at the expense of recognizing the diversity of humanity.
Charity/Government Social Institutions
In her great article, Toward a Feminist Theory of Disability, Susan Wendell talks about how “governments and charity organizations will spend far more money to keep disabled people in institutions where they have no chance to be productive than they will spend to enable the same people to live independently and productively.”
I’ll point out more examples in the solutions section, but the Independent Living Movement showcased how there are many opportunities for people to live full and productive lives, but just with a few accommodations.
Also, Susan Wendell highlights how these “‘special’ resources the disabled need merely compensate for bad social planning that is based on the illusion that everyone is young, strong, healthy (and, often, male).”
Whether we are talking about film, literature, plays, or television, the media is rife with depictions of disability…though, most of it is negative and paternalistic.
Two of the most common stereotypes of disability in the media are those of the “tragic villain” (i.e. the disability/deformity “represents their evil”) and the “superhero” (i.e. those who “overcome” their disability).
The hero is the one who “overcomes,” which is problematic as I looked at earlier. By sensationalizing headlines/stories and drawing a connection between intellectual impairment and criminality the news media continues this focus on the “villain.”
James Charlton writes that the worst forms of disability representations “are the telethons ‘for. crippled people, especially, poor, pathetic, crippled children…In the U.S. surveys have shown that more people form attitudes about disabilities from telethons than from any other source.”
So stereotypic characters and telethons are where most people get their ideas of disability. No wonder we still have so much work to change the “culture of normalcy.”
The Education System
“Students with disabilities, as soon as their disability is recognized by school officials, are placed on a separate track” notes James Charlton. This separate track often has lower standards for children and immediately expects students to achieve less.
James Charlton also provides this troubling list of the common ways the education system controls students with disabilities through:
- Labeling – e.g. special education and ADHD
- Symbols – e.g. “Handicapped Room” signs
- Structure – e.g. pull-out programs, segregated classrooms, “special” schools, inaccessible areas, etc.
- Curriculum – “especially designed for students with disabilities (behavior modification for emotionally disturbed kids, training skills without knowledge instruction for significantly mentally retarded students and students w/ autistic behavior) or having significant implications for these students”
- Testing and evaluation – “biased toward the functional needs of the dominant culture”
- Body language/Disposition of school culture – “teachers almost never look into the eyes of students with disabilities and practice even greater patterns of superiority and paternalism than they do with other students”
- Discipline – e.g. physical restraints, out-of-school suspensions, isolation/time-out rooms with locked doors, use of Haldol and other sedatives, etc.
One of the most currently talked about impediments to justice, is the School-to-Prison Pipeline. The School-to-Prison Pipeline describes the increasing reliance on punitive-based measures and law enforcement for handling student behavior that, according to The Advancement Project “push children off of an academic track and on to a track to prison.”
The Advancement Project goes on to say “Youth of color, LGBTQ students, and students with disabilities are punished more often and more harshly than their peers for the same misbehavior.”
In the fall I went to a conference put on by Education Voices here in Delaware and it put the stats around race and perceived disability into clear context for me. The keynote speaker Dr. Umar Abdullah-Johnson said how black boys are 4 times as likely to be misclassified as intellectually disabled, and 4 times as unlikely to be classified as mentally gifted.
He want on to speak about how really, it’s very difficult to actually tell if a student is disabled when they are between Kindergarten and 3rd grade. Most times students of color will be labeled “ADHD” or other special needs if people perceive them to be “disruptive.” There are countless reasons why a student is having trouble at school, but often the first thing people think of is a emotional/learning disability.
One of the biggest things I took away from Dr. Umar Abdullah-Johnson’s talk was how, once a student is “labeled,” they often carry that label with them for the rest of their lives (i.e. they think they cannot achieve as much because society tells them that they are “disabled”).
Action 1 – Recognize that Disability is an identity. An identity can be something people claim (e.g. through the statement “disabled and proud”), but it can also be an identity that faces discrimination and bias (e.g. through thinking of those with disability as “not normal”).
In a world where the medical definitions dominate discussions of disability (and what they can/cannot do), we need to remember that disability should not be centered on comparisons, but rather about adaptation to circumstance (i.e. less focus on “limitations,” but more focus on what people can do with the body/mind they do have). Just because it may be different, doesn’t necessarily mean they are “suffering.”
Thus you may hear some talk about the Disabled community and their shared connections. Not everyone feels this way about their disability, but just remember that for many people the disability they have has shaped their view of the world and thus is an integral part of their identity.
Playwright and Disability rights activist Neil Marcus said “Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live.”
Action 2 – End the use of ableist language and promote the (numerous) alternatives. How we communicate is one of the most influential in shaping human values and ideas. We need to recognize that some of our language continues to “other” those with disabilities, both mental and physical.
Here’s a great list of alternative words to use instead of “crazy,” “nuts,” “psycho,”,”insane,” “retarded,” and “lame.” The author also covers phrases such as “they were ‘blinded’ by the fact” and “the campaign was ‘crippled’ by the latest development.” Really check this list out!
Also, if you’re looking for how ableist language contributes to racism Black Girl Dangerous has a detailed analysis of the word “psychopath” that you’ll want to see.
Action 3 – Stop promoting the “normal” able-bodied life as the only “full” way to live. Talking about the Disabled as “suffering from” or “afflicted with” a particular condition is one of the most common ways of talking about disability; however, it implies that anyone with a disability must be suffering and that is the defining feature of their lives.
This way of talking (e.g. “suffering from” or “afflicted with”) heightens the view of those with disabilities as “passive” and “victims.” This should not be our automatic view.
An individual may have a disability, but we should believe they have the same chance for having a fulfilling life as the rest of us in this complicated world. Though, society actually makes things difficult by focusing on the disability, rather than the person.
There are plenty of ways to live, so it’s time to stop focusing on a “normal” life as the only way.
Medical industrial complex
Action 4 – Focus on “treating” society, not just the individual. When society thinks of disability only in medical terms, we miss an opportunity to address oppression and injustice.
While the medical system has produced tremendous benefits for some with disabilities and saved lives, it has also contributed to the idea that those with disabilities are “suffering” and must be “fixed” to live a “normal” life.
Simi Linton writes in Reassigning Meaning ”the medicalization of disability casts human variation as deviance from the norm, as pathological condition, as deficit, and significantly as an individual burden and personal tragedy.”
So while we still need the medical system, society as a whole should put the emphasis on what it can do to change, rather than just thinking the only thing it can do is support the medical system. Just check out this list of actions for other ideas on what society can do!
Action 5 – Create a medical system based on serving the needs of people and halt the corporatization of medicine. I mentioned the medical industrial complex above, which each year seems to continue making higher profits and corresponding higher rates to consumers.
This Medical Industrial Complex gets people to spend billions of dollars to be “normal,” and convinces some they are “a burden.” With the expansion of the pharmaceutical industry into drugs affecting the brain, we see more and more people striving to be “like everyone else.”
Every new “defect” becomes an opportunity for corporate profit.
If instead we had a medical system based on what people need, as opposed to corporations, then we might actually have people living fulfilling lives instead of continually taking drugs or looking for the most advanced technology.
Action 6 – Stop the rapid rise in diagnoses of “mental illness.” As I noted earlier in this post, the Medical Industrial Complex identifies “severe mental illness” at higher rates among poor communities of color.
Colorlines highlights a few studies showing that this rise in over-identifying “mental illness” comes from the civil rights movements where psychiatry field “updated” their definitions to include “hostile and aggressive behavior.” Meaning many involved in protests may be seen as “mentally ill.”
It is not hard to believe that the first studies showing “people of color were often over-diagnosed with much more severe mental illnesses than their white counterparts” came in the 1970s shortly after the updated definitions in the ‘60s.
Media and representation
Action 7 – Show disability as just another part of human identities (e.g. gender or class), and stop sensationalizing it (e.g. “heroes” and “villains”). “[W]hile stories rely upon the potency of disability as a symbolic figure, they rarely take up disability as an experience of social or political dimensions” note David Mitchell and Sharon Snyder.
This statement reminded me that nearly everytime I see disability represented in any form of media (e.g. books and TV), disability is almost always a “symbol” for part of the plot. Disability should be represented, but as a social identity.
We should see people with disabilities represented living, working, raising families, having joys/sorrows, etc. just as we do for every other identity.
Action 8 – Fundamentally change telethons so they show those with disabilities participating in community life and living independently. Evan Kemp Jr., a former director of the Disability Rights Center, noted how telethons contribute to the perception that “many people in our society consider the disabled to be childlike, helpless, hopeless, nonfunctioning and noncontributing members of society.”
He goes on to note that by only showing children (i.e. “ideal for use in a pity appeal”), and ignoring adults, telethons maintain the sentiment that “the adolescent or mature adult is a cripple to be avoided.”
“Playing to pity may raise money, but it also raises walls of fear between the public and us” Evan Kemp Jr. writes. Instead of strengthening the narrative of equating disability with “helplessness,” telethons must show the myriad of people living as part of a community and independently.
Action 9 – Install restorative policies and end the School-to-Prison-Pipeline. I already mentioned how the School-to-Prison-Pipeline negatively impacts students of color and those with disabilities (i.e. harsher and more severe discipline).
Ending the school-to-prison-pipeline will take a combination of funding schools at appropriate levels (e.g. for school counselors and programs aimed at early intervention), applying restorative justice policies (i.e. policies based more on how a student can contribute, rather than punishing them), and ending high stakes testing.
Action 10 – Give schools more resources so they can provide more accommodations instead of “special education”/labeling students. Special education today focuses on providing a different curriculum to students who do not fit the “norm” (e.g. having trouble focusing). This curriculum often has lower expectations. This also involves “labeling” (e.g. ADHD), which lasts a lifetime.
If schools had appropriate levels of funding, as opposed to being constantly underfunded, then they would be able to meet students’ needs in other ways than immediately sending every kid who has trouble focusing to special education.
Some of the alternatives to an IEP (individualized education plan) for accommodations use a 504 education plan to provide more 1-to-1 aides, more breaks, meetings with counselors, and longer time on tests.
Action 11 – Develop policies/programs based on accommodation, instead of dividing and elimination. Instead of setting limits on what we think people can do, we should be creating initiatives that emphasize supporting a person in adapting to life based on their disabilities.
This contrasts with the dominant model now that tries to setup separate facilities or spur research to “end disability.” These clearly communicate a truly negative message, as opposed to including options that accommodate what a person needs to live their life as fuller as possible.
Action 12 – Stop relying on fears of disability in fundraising or in promoting policies/programs. Whether in the telethons or in modern conservative politics talking about the dangers of the “disability king.”
Either way, these types of rhetoric indicate that we should think of those with disabilities as “burdens.”
On the political side, James Wilson writes in (Re)Writing the Genetic Body “In this bogeyman representation, disability becomes not only a personal tragedy but a public burden that costs taxpayers excessively.”
The message from the nonprofit/medical side is not much better, since it focuses on “If we raise enough money we can ‘erase’ disability.’”
Continuing to raise fears of disability perpetuates the “culture of normalcy” and keeps us away from social accommodation and the “othering” of those with disabilities.
Action 13 – Promote independent living policies, rather than solely supporting dependent living. One of the central aims of disability rights is to end segregated living (i.e. housing those with disabilities in facilities, where the residents have little control over their lives), and instead create independent living programs.
Independent living programs bring about self-determination (both mental and physical), by having the following attributes. These attributes of independent living situations include those that:
- People with disabilities run and maintain
- Provide peer support/role modeling where people learn how to live life from others with similar disabilities
- Build a sense of collective community.
So instead of someone learning only from a nondisabled “professional” about how to live with a mental/physical disability, they would instead have a chance to be included in, and actively contribute to, a community of support.
Action 14 – Remember disability is a civil and human rights issue, not an individual issue. The history of the disability rights movement highlights the significant emphasis on disability as a civil rights issue, countering the idea that a disability was purely an individual issue.
This means we as a society are responsible for ending discrimination/hate crimes, supporting independent living programs, ending the culture of “normalcy,” etc.
Action 15 – Engage in confidence building and ending the mindset of self-oppression. From a young age in our “culture of normalcy” we teach people to set a “low bar” for those with disabilities.
The same model of internalizing oppression (i.e. believing the myths and stereotypes of how one must act or what one can do in life) that impacts other identities, also influence those with disabilities. Some may overcome this mindset, but we shouldn’t even allow this self-oppression to develop at all.
Instead, if we taught each other, disabled and nondisabled, to focus less on the limits of impairments and focus more on how we can adapt to whatever our situation is to achieve the most we can, don’t you think more people would be living fulfilling and independent lives?
Action 16 – Support the Disabled community’s push for self-determination. Tobin Siebers strongly states that those with disabilities just want “to live life as a human being…They do not want to feel dominated by the people on whom they depend for help.”
Often those who need services from others just to function become represented as “weak or inferior;” however, they just want to live life on equal terms with those providing the services.
Tobin Siebers reminds us that we should be “opposing the belief that people with disabilities are needy, selfish, and resentful – and will consequently take more than their fair share of resources from society as a whole.” The Disabled community aims for self-sufficiency and self-determination, NOT more programs that keep them away from their own sovereignty.
This means that for many with disabilities, people just want “to live with their disability, to come to know their body, to accept what it can do, and to keep doing what they can for as long as they can” continues Tobin Siebers.
These actions listed are just the start of what many Disability justice activists have called for, and continue to call for.
The “Culture of Normalcy” already has countless people trying to break it down, and replace it with values based on recognizing all people. We just have to keep pushing.