IDENTITY FIRST LANGUAGE – AUTISTIC PERSON, PERSON WITH AUTISM OR WHAT?

What do you wish to be called? Is there a right way or wrong way of calling ourselves the way we want to be called?

Hey you! Are you an Autistic Person? Are you a person with Autism? What do I really need to call you? More importantly, who am I and what do I see myself as an individual? Argh! Stop calling me some of these first languages as you should know that really grinds my gears, guys. As we know that words and language are powerful tools by which an individual can express ideas, thoughts and more whether it is abstract, actionable or concrete.

I myself as an individual know firsthand and understand full darn well that language and the meanings of words can very much impact someone no matter who and what they are as a person. We as individuals I believe do tend to attach to some of the words very much for impact and influence and even more so developing and changing the attitudes that we have towards the subjects and or matters of discussion. That’s why many people I have spoken to or heard from are easily insulted or upset by the everyday word choices that we have.

I am here today to try and explain to you all right now about this topic as this is really controversial for many of us that are autistic. Before, I begin this is just based on what I’ve experienced and known all my time after talking to some people in the autistic community about how they may feel. So, please respect me for what I will share.

It has been known for quite some time now for many of us autistics that we meet some people that have some misunderstanding and misconceptions about autistics no matter what it is.

So, the question many that we would be asking ourselves right now is how did people’s first language come about? People’s first language is also known or called person-first language which is a linguistic description that will usually put a person before their actual diagnosis of any kind and in this case the many terms that I just used right now for autistics. This linguistic description usually describes what a person “has” than asserting what a person “is.”

Rather than using labels to define individuals with a health issue, it’s more appropriate to use terminology, which describes individuals as being diagnosed with an illness or disorder.

This was supposed to be intended to avoid any marginalization and/or dehumanization (either consciously or subconsciously) when discussing people with a chronic illness or disability. Again, I shall remove the term disability as I don’t feel this is the right word I am looking for. The term I will use as I have done in the past is people with different conditions. This may have been seen as a type of a disability etiquette but person-first language can also be more generalized to any group otherwise known or can be defined or mentally categorized by a condition or a trait (examples that are sometimes known for doing so are race, age or appearance along with the different sexuality types).

Person-first language usually avoids using labels or adjectives to define someone, utilizing terms such as ‘A person with diabetes or a person with alcoholism’ instead of what we hear is “a diabetic’ or ‘an alcoholic’. With this being said, the intention here is that a person is seen first and foremost as a person with some given specific trait or characteristic. Some advocates that I’ve spoken to or even heard from have usually had a person-first language point to the failure to mentally separate the person from the traits or characteristics and the person is either inherently bad or inferior, leading to the point where discrimination takes place. Another example for you all to gain a better understanding is “a person with a substance use disorder” has a fair chance of achieving long-term remission yet for many years it has been changed to calling these types of people “substance abusers”

Another question that you are thinking to yourselves as you’re reading and/or watching this today is why we self-advocates are so opposed to some of these terms that have been clearly shared just now. Aren’t we all about emphasizing and correcting inaccurate, misleading and harmful stereotypes and their attitudes towards all of this?
For sure, some of us may get offended yet some of us or shall we say the majority of us no matter what we are and who we are wants to be seen as a person that has equal rights, values and worth. One argument I encountered in one of the more cogently-written papers in favour of person-first language expostulates that because cancer patients are referred to as “people with cancer” or “people who have cancer,” as opposed to “cancerous people,” the same principle should be used with autism. There are some fundamental flaws with this analogy, however.

This is another example of many that I hear about.
Cancer is a disease that ultimately kills if not treated or put into long-term remission.
There is absolutely nothing positive, edifying, or meaningful about cancer.
Cancer is not a part of a person’s identity or the way in which individual experiences and understands the world around him or her.
It is not all-pervasive.

We need to remember that Autism isn’t a disease as I’ve clearly shared this so many times what Autism is which I will link in the icard and description box below to gain a better understanding of this if you’ve not seen these. I have clearly shared that it’s a neurological and developmental condition. It has now been classed as a disorder yet this is really disabling in many varied ways.

CRITICISM

There have been some critics that have objected that people-first language is awkward, repetitive and makes for some tiresome reading and writing. A sociologist by the name of C. Edwin Vaughan as well as a longtime activist for the blind argues that since “in common usage, positive pronouns usually precede
nouns” The awkwardness of the preferred language focuses on the disability in a new and potentially negative way. According to Edwin Vaughan, it only serves to focus on disability in an ungainly new way and calls attention to a person as having some type of “marred identity” in terms of Erving Goffman’s theory of identity.

ERVING GOFFMAN’S FACE AND STIGMA THEORY EXPLAINED

In 1963, Erving Goffman published Stigma: Notes on the Management of Spoiled Identity.

It is an examination of how an individual protects their personal identity if they depart from an approved standard of conduct, behaviour, or appearance.
It is essentially a way for people to manage an impression of themselves.

For most people, the primary method used to avoid stigma is concealment.

 

 

This is because the perception of a stigma will often result in shame. There is a personal disappointment in an inability to meet the standards that other people or society, in general, has set for them. There is also a fear of being discredited, which causes an individual to conceal whatever shortcomings they feel that they have.

Think of a person with a criminal record. They might withhold this information when meeting someone new to prevent being judged off of the record instead of who they are as a person.

This is expanded upon in an essay by Goffman called “Face Work,” which was published in Interaction Ritual and originally written in 1955. When combined, Goffman notes that there are three types of symbolic imagery which influence how individuals may think, act, or react. These are stigma symbols, prestige symbols, and what Goffman calls “disidentifiers.”

HOW FACE AND STIGMA THEORY IS APPLIED?

Goffman offers the idea that the interactions people have with one another on a daily basis are like a theatrical performance. This is especially true when two strangers encounter one another. Each person has the goal of controlling the first impression that the other individual has of them.
They will guide this impression by withholding information, altering their own setting, or even changing their appearance and mannerisms to create the desired result.

The performance is likened to what happens on a theatrical stage because there are two elements: what is provided to the audience and what occurs backstage.
This creates a dual role for each person.

For the onstage performance, an individual becomes the person they feel an individual wants them to be or what society demands of them. It is what occurs through social interactions and results in positive self-concepts when the desired first impression is offered and then successfully received. For the backstage performance, there doesn’t actually need to be a performance. It is a place that is hidden and private, allowing individuals the opportunity to drop the role or identity that they offer to the world. There is no longer a need to follow the demands that society offers here. At the same time this face-to-face “performance” is happening, the individual attempting to garner an accurate first impression of the individual is working to obtain more information from them.

Goffman notes that he believes this practice is performed because it offers both people an opportunity to avoid embarrassment. This is because society is a living, breathing entity. Every person feels the need to act differently in changing situations.

Social Model Of Disability – How It Works?

In the social model of disability, a person is disabled by societal and environmental factors. To explain more briefly this model as it’s called The social model of disability identifies systemic barriers, derogatory attitudes, and social exclusion (intentional or inadvertent), which make it difficult or impossible for individuals with impairments to attain their valued functioning. The social model of disability diverges from the dominant medical model of disability, which is a functional analysis of the body as a machine to be fixed in order to conform to normative values. While physical, sensory, intellectual, or psychological variations may cause individual functional limitations or impairments, these do not necessarily have to lead to disability unless society fails to take account of and include people regardless of their individual differences.

MEDICAL MODEL VERSUS THE SOCIAL MODEL OF DISABILITY

Medical Model Social Model
Disability is a deficiency or abnormality. Disability is a difference.
Being disabled is negative. Being disabled, in itself, is neutral.
Disability resides in the individual. Disability arises from interactions between the individual and society.
The remedy for disability-related problems is cure or normalization of the individual. The remedy for disability-related problems is a change in the interactions between the individual and society.
The agent of remedy is the professional who affects the arrangements between the individual and society. The agent of a remedy can be the individual, an advocate, or anyone who affects the arrangements between the individual and society.
As an educator, you have no responsibility to ensure accessibility; that is the job of the experts. As an educator, you are responsible for creating an accessible environment where all your students can learn.

Accessible Education aims to reduce dependence on the accommodation approach and move toward inclusion.

The social model of disability is based on a distinction between the terms impairment and disability. In this model, the word impairment is used to refer to the actual attributes (or lack of attributes) that affect a person, such as an inability to walk or breathe independently.
The word disability is used to refer to the restrictions caused by society when it does not give equivalent attention and accommodation to the needs of individuals with impairments.
Hence, why I believe that this model needs to be changed and updated for training and educational purposes.

(Discuss more later in one of my next articles or vlog)

Autism activist, Jim Sinclair rejects the ideal of person-first language, on the grounds of saying “person with autism suggests that autism can be separated from the person. There are many organizations to this day that still use person-first language, especially in the autistic community and one of these organizations that are known for this is Autistic Self Advocacy Network Lydia Brown had to say this about the heated topic at hand.

In the autism community, many self-advocates and allies prefer terminology such as “autistic” “Autistic person.” or “autistic individual” we understand autism as an inherent part of the individual’s identity… It is impossible to affirm the value and worth of an autistic person without recognizing him or her identity as an autistic person. Referring to me as a person with autism’ or ‘an individual with Autism Spectrum Disorder’ demeans who I am because it denies who I am. When we say ‘person with autism’ we say that it’s unfortunate and an accident that a person is autistic. We affirm that the person has value and worth and that autism is entirely separate from what gives him or her value and worth. In fact, we are saying that autism is detrimental to value and worth as a person, which is why we separate the condition with the word “with” or “has” Ultimately, what we are saying when we say ‘person with autism is that the person would be better off if not autistic and that it would have been better if he or she has been born typical.

What I found most interesting in reading this selection of articles and blog posts along with trying to get as much involved in the autistic community is that many of the same arguments are used for both positions, but with separate sides, naturally, coming to very divergent and contradictory conclusions.

Firstly, I saw in at least two articles in favour of using “person with autism” that the authors strongly oppose language referring to disabilities like “suffers from,” (i.e. “Alan suffers from Asperger’s syndrome;” “Joey, an autism sufferer;” etc.) which has traditionally been a talking point of self-advocates as well. I do understand that not everyone who supports the use of the terminology “person with autism” would disagree with language like “suffers from,” but it is still interesting that there are those who do. It suggests a fundamental shared value — that people with different neurological conditions are not “suffering” because of their difference or disability.

Secondly, as alluded to earlier, those on both sides want to emphasize the value and worth of the person. Person-first language advocates believe the best way to do this is through literally putting the noun identifying “person” before any other identifiers. (As noted in one of the other articles opposing person-first language, however, English is a language that puts adjectives before nouns, whereas there are multiple languages that always place adjectives after nouns.
In Spanish, for example, “person with autism” is “persona con autismo,” while “Autistic person” becomes “persona autística.” In both cases, autism/Autistic follows the noun.) Person-first language opponents believe the best way to do this is by recognizing and edifying the person’s identity as an Autistic person as opposed to shunting an essential part of the person’s identity to the side in favour of political correctness.

It is impossible to affirm the value and worth of an Autistic person without recognizing his or her identity as an Autistic person. Referring to me as “a person with autism,” or “an individual with Autism Spectrum Disorder” demeans who I am because it denies who I am.

Lastly, what is most interesting indeed is the shared expressed sentiments that using or not using person-first language is necessary to change and shift societal attitudes toward Autistic people. Returning to the premise of this article, this is the sole reason why this debate continues to be argued and why many people on both sides regularly emerge upset and feel personally attacked. Language does play a large role in shaping societal attitudes.

But let’s think about what we are doing when we use these terms. When we say “person with autism,” we say that it is unfortunate and an accident that a person is Autistic. We affirm that the person has value and worth and that autism is entirely separate from what gives him or her value and worth. In fact, we are saying that autism is detrimental to value and worth as a person, which is why we separate the condition with the word “with” or “has.” Ultimately, what we are saying when we say “person with autism” is that the person would be better off if not Autistic and that it would have been better if he or she had been born typical. We suppress the individual’s identity as an Autistic person because we are saying that autism is something inherently bad like a disease.

Yet, when we say “Autistic person,” we recognize, affirm, and validate an individual’s identity as an Autistic person. We recognize the value and worth of that individual as an Autistic person — that being Autistic is not a condition absolutely irreconcilable with regarding people as inherently valuable and worth something. We affirm the individual’s potential to grow and mature, overcome challenges and disability, and live a meaningful life as an Autistic. Ultimately, we are accepting that the individual is different from non-Autistic people–and that that’s not a tragedy, and we are showing that we are not afraid or ashamed to recognize that difference.

That’s why, when I read a few articles scoffing entirely at the debate and dismissed it as ultimately irrelevant (insisting that each person should use the terminology he or she prefers and to ignore what other people say or write), I was concerned. The question of person-first language is definitely important and cannot be disregarded. The way we use language affects those around us — in our immediate communities and in society at large. Trends of language have the power to transform ideas and attitudes. To dismiss this as “a silly semantics argument” denies the power of language.

What does, however, disturb me is the vitriol during debates about these (and similar) topics in the autism community. While it is, as repeatedly emphasized, an important debate with huge ramifications both short-term and long-term, hurling ad hominem insults, making baseless accusations, and shouting over tables (or computer screens) at the people on the other side ultimately demeans both you and them. It shows great immaturity, inability to civilly and peaceably discuss important topics, and insensitivity to the personal experiences vested in each of us with a stake in this debate. Having strong opinions on a topic and being able to have a respectful discussion with someone else are not mutually exclusive.

I guess now the question that comes to you all is what do I call myself?

I usually call myself an Aspie a clinical slang term that means a person with Aspergers and removing the word “syndrome” doesn’t belong there.
I also shared some more of the thoughts on these terms in my other video which I shall link it here in the icard and description box for you all to watch after this
video to gain more understanding again.

LAST BUT NOT LEAST THE LAST QUESTION IS HOW DO WE MOVE ON FORWARD OR HOW CAN WE MOVE FORWARD

So what can we do moving forward? Or, more importantly, what should we do? To those of you who use “person with autism,” I will always respect your constitutional right to express yourself however you like, but I urge you to reconsider the consequences of using such language.
To those of you who use “Autistic person,” I urge you to consistently use such phrasing everywhere possible, whenever discussing autism and issues that affect Autistic people and to develop coherent, rational explanations for why you prefer this terminology so that you can engage in such mutually respectful and civil exchanges with others.

That, actually, goes for everyone. If we ever want to accomplish anything as a community, as a movement, or as advocates, we cannot allow ourselves to be constantly divided by infighting and vicious bullying — and yes, that occurs from all sides of these debates, not just one. It is imperative that we learn to engage critically and respectfully with one another and to value each individual’s voice and feelings as equally important. Otherwise, we’ll become even more dysfunctional than my subcommittee has been in recent months.

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