Neurodiversity in the Classroom

The picture shows a school classroom as I see it, as an autistic person.  A kaleidoscope of shape and blinding lighting, with vague outlines which are probably other students.  Deafening noise.  The stench of different smells.  The confusion of many voices, including some heard through walls from neighbouring halls and classes.  School uniform that feels like barbed wire on my skin.

In the chaos, a different voice which I have to try to listen to.  It’s so hard.  My brain doesn’t want to tune the rest of the noise out.  Apparently I’ve been asked something, but I miss it.  The voice gets more strident, the class turns to look at me.  The intense stares overwhelm me.  The person next to me jostles me and it feels like an electric shock on my skin.  Only six more hours of hell to go…. only six….

Some of our autistic pupils simply cannot do this alone, without ‘time out’ to recover from the pain and exhaustion during the school day.  Not for hour after hour of puzzling painful chaos.

Source: Ann’s Autism Blog: Autism, School, Exclusion. What’s fair?

CW: behaviorism, ABA, PB[I]S, ableism, mental health, suicide

Walk into many SpEd classrooms, and you’ll see little awareness of neurodiversity and the social model of disability. Students with conflicting sensory needs and accommodations are squished together with no access to cave, campfire, or watering hole zones. This sensory environment feeds the overwhelm -> meltdown -> burnout cycle. Feedback loops cascade. Mind blind neurotypical adults call across the room, feeding the overwhelm. They ratchet compliance, feeding the overwhelm. They treat meltdowns as attention-seeking “fits”, feeding the overwhelm. They not only fail to presume competence, they speak about kids as if they aren’t even there, feeding the overwhelm. The familiar yet wrong things are done.

Contents:

  • Sensory Overwhelm and Meltdowns
  • Behaviorism
  • Autistic Adults and Autistic Community
  • Autistic Burnout
  • Participatory Research
  • The State of Research and the Harm Done
  • A Better Future, Together
  • Selected Quotes

Sensory Overwhelm and Meltdowns

We’ve turned classrooms into a hell for autism. Fluorescent lighting. Endless noise. Everywhere, bright patterns and overloading information. Groupwork and social time. Crowded hallways and relentless academic pressure. Autistic children mostly could cope in the quieter schools of decades ago. Not a hope now.

We cannot simply exclude autistic pupils for entering meltdowns. Meltdowns are part of autism for a good number of autistic young people.

Whilst mindful that of course everyone needs to be safe, the way to achieve safety is to stop hurting the autistic children. Punishing them for responding to pain is not something any of us need to do.

What schools need to do is to understand autism. In understanding it, we can help to stop putting the children in pain and exhaustion. It’s actually quite easy. And quite cheap.

Source: Ann’s Autism Blog: Autism, School, Exclusion. What’s fair?

One of the more encouraging developments in the autism field over the last decade or so has been a growing awareness of the significance of sensory issues. Sensory sensitivities are included in the DSM-5 as part part of the diagnostic criteria for autism, and in teacher training materials, such as those provided by the AET. They are also highlighted in campaigns by the National Autistic Society (NAS), for example. But despite these signs of increased understanding, I’m not convinced that in our schools there is a sufficiently nuanced appreciation of this multi-faceted phenomenon, which potentially influences a whole range of physical and perceptual processes (Bogdashina 2016). Indeed, the school environment can present autistic children with a multi-sensory onslaught in terms of sounds, smells, textures and visual impacts that constitutes both a distraction and a source of discomfort (Ashburner, Ziviani and Rodger 2008; Caldwell 2008). There was also clear evidence from my own study that sensory issues, and noise in particular, can be highly exclusionary factors for autistic children in schools.

Source: Inclusive Education for Autistic Children: Helping Children and Young People to Learn and Flourish in the Classroom

Behaviorism

The most important thing to understand about autism in shared space is sensory overwhelm. Education, in my experience as student and parent, doesn’t, not in any practical, first-person way. ABA and behaviorism pointedly don’t understand.

Plenty of policies and programs limit our ability to do right by children. But perhaps the most restrictive virtual straitjacket that educators face is behaviorism – a psychological theory that would have us focus exclusively on what can be seen and measured, that ignores or dismisses inner experience and reduces wholes to parts. It also suggests that everything people do can be explained as a quest for reinforcement – and, by implication, that we can control others by rewarding them selectively.

Allow me, then, to propose this rule of thumb: The value of any book, article, or presentation intended for teachers (or parents) is inversely related to the number of times the word “behavior” appears in it. The more our attention is fixed on the surface, the more we slight students’ underlying motives, values, and needs.

It’s been decades since academic psychology took seriously the orthodox behaviorism of John B. Watson and B.F. Skinner, which by now has shrunk to a cult-like clan of “behavior analysts.” But, alas, its reductionist influence lives on – in classroom (and schoolwide) management programs like PBIS and Class Dojo, in scripted curricula and the reduction of children’s learning to “data,” in grades and rubrics, in “competency”- and “proficiency”-based approaches to instruction, in standardized assessments, in reading incentives and merit pay for teachers.

It’s time we outgrew this limited and limiting psychological theory. That means attending less to students’ behaviors and more to the students themselves.

Source: It’s Not About Behavior – Alfie Kohn

We navigate systems stacked against us to get access to what amounts to dog trainingthat dog trainers know better than to use—and a segregated “special” track that pathologically pathologizes difference and fails to connect with the communities it helps marginalize.

The specialists that serve this “special” track aren’t so much specialized in the lives and needs of neurodivergent and disabled people (managing sensory overwhelm, avoiding meltdown and burnout, dealing with ableism, connecting with online communities, developing agency and voice through self-advocacy) as they are specialized in deficit and medical models that pathologize difference and identity. Such framing is too limited to see us.

So heartbreakingly many can’t even bring themselves to use our language or educate parents about our existence.

Autistic Adults and Autistic Community

After autistic students age out of our care, we erase them again as adults. Instead, we should be listening to them.

More children than ever before are being diagnosed with autism. But what about the adults? Some of these individuals have never been diagnosed but have always known they were a bit “different.” Others were diagnosed but did not have the same degree of societal acceptance or the same number of resources available to help them cope with a neurotypical world.

Now this group of adults is the demographic that best understands what people with autism need, whether or not they know how to articulate it in a way the rest of society is able to grasp. But what these men and women have to say about autism is important. These people need to be heard!

The video below encourages adults with autism to get involved in the discussion and asks others to be cognizant of the needs of people with autism and invite them into the conversation. The neurotypical community needs adults with autism to lend their voices and experiences to help make the future brighter for the next generation!

Check out this powerful video!

Source: This Video Demonstrates What It’s Like to Be an Autistic Adult Who Isn’t Being Heard | The Autism Site Blog

understanding the perspectives and experiences of autistic children and adults in particular was essential. Time and again I found that issues aired say, by teachers, would be completely reframed when the autistic adults discussed the same points.

Source: Inclusive Education for Autistic Children: Helping Children and Young People to Learn and Flourish in the Classroom

Being an autistic parent of an autistic child means navigating a world that doesn’t see us as whole while advocating for two people at the same time. Specialists don’t take autistic parents seriously, don’t trust that we know our own needs, let alone a child’s. How can we when we’re in need of special services and accommodations, too?

Source: Catapult | Catapult | The Greatest Challenge of Raising an Autistic Child as an Autistic Parent? The Ableist World We Live In | Lu Everman

Autistic Burnout

After sensory overwhelm, the next most important thing to understand about autism in the classroom is autistic burnout. Autistic burnout is unknown in the deficit and medical models. To hear about it, you have to go to #ActuallyAutistic people. We live this.

If you saw someone going through Autistic Burnout would you be able to recognise it? Would you even know what it means? Would you know what it meant for yourself if you are an Autistic person? The sad truth is that so many Autistic people, children and adults, go through this with zero comprehension of what is happening to them and with zero support from their friends and families.

If you’re a parent reading this, I can confidently say that I bet that no Professional, from diagnosis, through any support services you’re lucky enough to have been given, will have mentioned Autistic Burnout or explained what it is. If you’re an Autistic person, nobody will have told you about it either, unless you’ve engaged with the Autistic community.

Autistic Burnout is an integral part of the life of an Autistic person that affects us pretty much from the moment we’re born to the day we die, yet nobody, apart from Autistic people really seem to know about it…

Source: An Autistic Burnout – The Autistic Advocate

Participatory Research

Do as these researchers are finally doing. They are in the space connecting with autistic people. They are using and spreading our language. They are building, with us,  a community of practice around participatory research that reflects our priorities. We see them and welcome others, particularly K-12.

Scientists are increasingly recognizing a moral imperative to collaborate with the communities they study, and the practical benefits that result. Autism researchers are joining this movement, partnering with people on the spectrum and their families to better address their priorities.

Source: Autism research needs a dose of social science | Spectrum | Autism Research News

https://twitter.com/slooterman/status/1028017893370417152?s=12

The State of Research and The Harm Done

Events like The International Society for Autism Research (INSAR) annual meeting are waking to the harm that has been done. They are finally including autistic people and autistic perspective.

https://twitter.com/slooterman/status/1041117954287566848

https://twitter.com/aneeman/status/1041118747078078464

https://twitter.com/aneeman/status/1041119659817426944

https://twitter.com/aneeman/status/1041120050562912256

A Better Future, Together

So many of us in this system want to do better. Students and teachers find themselves in spaces guaranteed to result in feedback loops and meltdowns and the eventual burnout of everyone involved.  Responding to fires and stresses caused by overloaded sensory spaces and deficit ideology consumes more time, people, and passion than available and starves a better future of oxygen.

A better future requires time and will to get structural, get socialget equity literate, connect with communities, and build classroom user experiences compatible with neurodiversity and disability. SpEd and self-advocates should be working together,  designing for real life and fixing injustice, not kids.

A better future requires a justice mindset.

A better future requires an acceptance mindset.

A better future is a future made togetherRespecting neurodiversity improves interactions between neurodivergent people and public services. To that end, here are some autistic perspectives on sensory overwhelm, meltdowns, burnout, compliance, behaviorism, and “special needs“.

Selected Quotes

Sensory overwhelm is a marquee feature of my life. Autistic perception can be a high fidelity flood in an intense world. “Autistic perception is the direct perception of the forming of experience. This has effects: activities which require parsing (crossing the street, finding the path in the forest) can be much more difficult. But there is no question that autistic perception experiences richness in a way the more neurotypically inclined perception rarely does.

Prolonged sensory overwhelm can lead to meltdown. A meltdown is not a tantrum. It is not attention-seeking. It is a response to overwhelm, anxiety, and stress. If I meltdown, the best thing you can do is be present, patient, calm, quiet, and compassionate. Meltdowns are tidal waves of sensory overwhelm. Try not to add to the overwhelm. “But I’m tortured because whilst I don’t want to make a scene or have strangers adding to the overload and overwhelm, I’m simultaneously desperate for someone to give me a massive, firm, bear-hug. To hide me, cocoon me, and shield me from the shock waves that travel from their universe into mine.

Overwhelm, meltdowns, and the stress of trying to fit into neurotypical society lead to autistic burnout. “Burnout can happen to anyone at any age, because of the expectation to look neurotypical, to not stim, to be as non-autistic as possible. Being something that neurologically you are not is exhausting.

Noncompliance is a social skill“. “Prioritize teaching noncompliance and autonomy to your kids. Prioritize agency.” “Many behavior therapies are compliance-based. Compliance is not a survival skill. It makes us vulnerable.” “It’s of crucial importance that behavior based compliance training not be central to the way we parent, teach, or offer therapy to autistic children. Because of the way it leaves them vulnerable to harm, not only as children, but for the rest of their lives.” Disabled kids “are driven to comply, and comply, and comply. It strips them of agency. It puts them at risk for abuse.” “The most important thing a developmentally disabled child needs to learn is how to say “no.” If they only learn one thing, let it be that.” “Our non-compliance is not intended to be rebellious. We simply do not comply with things that harm us. But since a great number of things that harm us are not harmful to most neurotypicals, we are viewed as untamed and in need of straightening up.”  ‘What I am against are therapies to make us stop flapping our hands or spinning in circles. I am against forbidding children to use sign language or AAC devices to communicate when speech is difficult. I am against any therapy designed to make us look “normal” or “indistinguishable from our peers.” My peers are Autistic and I am just fine with looking and sounding like them.‘ “When an autistic teen without a standard means of expressive communication suddenly sits down and refuses to do something he’s done day after day, this is self-advocacy … When an autistic person who has been told both overtly and otherwise that she has no future and no personhood reacts by attempting in any way possible to attack the place in which she’s been imprisoned and the people who keep her there, this is self-advocacy … When people generally said to be incapable of communication find ways of making clear what they do and don’t want through means other than words, this is self-advocacy.” “We don’t believe that conventional communication should be the prerequisite for your loved one having their communication honored.

Source: I’m Autistic. Here’s what I’d like you to know.

https://twitter.com/mrhunsaker/status/1014907760901668865

The logic of the connection between “special needs” and “special [segregated] places” is very strong – it doesn’t need reinforcement – it needs to be broken.

Further, the “special needs” label sets up the medical “care” model to disability rather than the social inclusion model of disability. It narrows and medicalises society’s response to the person by suggesting that the focus should be on “treating” their “special needs”, rather than on the person’s environment responding to and accommodating the person – including them for the individual that they are.

There is another insidious but serious consequence of being labelled (as having or being) “special needs”. The label carries with it the implication that a person with “special needs” can only have their needs met by “special” help or “specially-trained” people – by “specialists”. That implication is particularly powerful and damaging in our mainstream schooling systems – it is a barrier to mainstream schools, administrators and teachers feeling responsible, empowered or skilled to embrace and practice inclusive education in regular classrooms, and accordingly perpetuates attitudinal resistance to realising the human right to inclusive education under Article 24 of the Convention on the Rights of Persons with Disabilities.

In other words, the language of “special needs” leads to, and serves to excuse, a “can’t do” attitude as the default position of many general educators – it effectively deprives inclusive education of its necessary oxygen – a conducive “can do” classroom culture.

The label of “special needs” is inconsistent with recognition of disability as part of human diversity.  In that social framework, none of us are “special” as we are all equal siblings in the diverse family of humanity.

Source: “He ain’t special, he’s my brother” – Time to ditch the phrase “special needs” – Starting With Julius

An education that is designed to the edges and takes into account the jagged learning profile of all students can help unlock the potential in every child.

Source: From Hostility to Community – Teachers Going Gradeless

We have autistic children who need us to support them as architects of their own liberation against the schools and clinicians and institutions and police and prosecutors who would crush and destroy them.

Source: Autistic Hoya: The neurodiversity movements needs its shoes off, and fists up.

Further reading,

The Segregation of Special

The word “special” is used to sugar-coat segregation and societal exclusion – and its continued use in our language, education systems, media etc serves to maintain those increasingly antiquated “special” concepts that line the path to a life of exclusion and low expectations.

Source: “He ain’t special, he’s my brother” – Time to ditch the phrase “special needs” – Starting With Julius

Updated version available

An updated version of this piece is available at Stimpunks Foundation.

This piece speaks to my experience as a neurodivergent father with neurodivergent kids. “Special” is non-inclusive, discriminatory language. It is a deficit and medical model euphemism that excuses segregation and exclusion.

“Special” is the language of patients captive to a disability industrial complex. “We have a medical community that’s found a sickness for every single human difference. DSM keeps growing every single year with new ways to be defective, with new ways to be lessened.” “We have created a system that has you submit yourself, or your child, to patient-hood to access the right to learn differently. The right to learn differently should be a universal human right that’s not mediated by a diagnosis.Identity-first is the language of agents. By replacing “special” with social model language, we can begin the transformation from patient to agent.

“Special” is the language of compliance. Disabled kids “are driven to comply, and comply, and comply. It strips them of agency. It puts them at risk for abuse.” “Prioritize teaching noncompliance and autonomy to your kids. Prioritize agency.” “The most important thing a developmentally disabled child needs to learn is how to say “no.” If they only learn one thing, let it be that.” “It’s of crucial importance that behavior based compliance training not be central to the way we parent, teach, or offer therapy to autistic children. Because of the way it leaves them vulnerable to harm, not only as children, but for the rest of their lives.

“Special” is the language of abuse. People that are “special” can be tormented and murdered.

Change our vocabulary and change our framing. Use the inclusive language of neurodiversity & the social model of disability. Use the power of identity first language to connect disabled kids with an identity and tribe. With identity-first pride and a social model tribe at their backs, kids can better develop voice, agency, and the tools of self-advocacy.

The time is now for social model inclusion. Our needs are human needs, not special needs. Language matters. We have a moral imperative to connect with the communities we serve and use the language they prefer.

Although human diversity, the social model of disability and inclusion as human rights framework concepts are developing traction, for much of society the “special story” still goes like this:

A child with “special needs” catches the “special bus” to receive “special assistance” in a “special school” from “special education teachers” to prepare them for a “special” future living in a “special home” and working in a “special workshop”.

Does that sound “special” to you?

The word “special” is used to sugar-coat segregation and societal exclusion – and its continued use in our language, education systems, media etc serves to maintain those increasingly antiquated “special” concepts that line the path to a life of exclusion and low expectations.

The logic of the connection between “special needs” and “special [segregated] places” is very strong – it doesn’t need reinforcement – it needs to be broken.

Further, the “special needs” label sets up the medical “care” model to disability rather than the social inclusion model of disability. It narrows and medicalises society’s response to the person by suggesting that the focus should be on “treating” their “special needs”, rather than on the person’s environment responding to and accommodating the person – including them for the individual that they are.

There is another insidious but serious consequence of being labelled (as having or being) “special needs”.  The label carries with it the implication that a person with “special needs” can only have their needs met by “special” help or “specially-trained” people – by “specialists”.  That implication is particularly powerful and damaging in our mainstream schooling systems – it is a barrier to mainstream schools, administrators and teachers feeling responsible, empowered or skilled to embrace and practice inclusive education in regular classrooms, and accordingly perpetuates attitudinal resistance to realising the human right to inclusive education under Article 24 of the Convention on the Rights of Persons with Disabilities.

In other words, the language of “special needs” leads to, and serves to excuse, a “can’t do” attitude as the default position of many general educators – it effectively deprives inclusive education of its necessary oxygen – a conducive “can do” classroom culture.

The label of “special needs” is inconsistent with recognition of disability as part of human diversity.  In that social framework, none of us are “special” as we are all equal siblings in the diverse family of humanity.

Source: “He ain’t special, he’s my brother” – Time to ditch the phrase “special needs” – Starting With Julius

Having “special needs” classrooms upholds neurotypicality, for instance, as the dominant model of existence. Drugging our children because of their attention deficit is upholding a neurotypical norm. Sending our black and indigenous children to juvenile detention centers in disproportionate numbers is upholding a neurotypical norm which takes, as neurotypicality always does, whiteness as the standard.

Source: Histories of Violence: Neurodiversity and the Policing of the Norm – Los Angeles Review of Books

Because the pathology paradigm has been dominant for some time, many people, even many who claim to advocate for the empowerment of Autistic people, still habitually use language that’s based in the assumptions of that paradigm. The shift from the pathology paradigm to the neurodiversity paradigm calls for a radical shift in language, because the appropriate language for discussing medical problems is quite different from the appropriate language for discussing diversity. The issue of “person-first language” is a good basic example to start with.

If a person has a medical condition, we might say that “she has cancer,” or she’s “a person with allergies,” or “she suffers from ulcers.” But when a person is a member of a minority group, we don’t talk about their minority status as though it were a disease. We say “she’s Black,” or “she’s a lesbian.” We recognize that it would be outrageously inappropriate – and likely to mark us as ignorant or bigoted – if we were to refer to a Black person as “having negroism” or being a “person with negroism,” or if we were to say that someone “suffers from homosexuality.”

So if we use phrases like “person with Autism,” or “she has Autism,” or “families affected by Autism,” we’re using the language of the pathology paradigm – language that implicitly accepts and reinforces the assumption that Autism is intrinsically a problem, a Something-Wrong-With-You. In the language of the neurodiversity paradigm, on the other hand, we speak of neurodiversity in the same way we would speak of ethnic or sexual diversity, and we speak of Autistics in the same way we would speak of any social minority group: I am Autistic. I am an Autistic. I am an Autistic person. There are Autistic people in my family.

These linguistic distinctions might seem trivial, but our language plays a key role in shaping our thoughts, our perceptions, our cultures, and our realities. In the long run, the sort of language that’s used to talk about Autistics has enormous influence on how society treats us, and on the messages we internalize about ourselves. To describe ourselves in language that reinforces the pathology paradigm is to use the master’s tools, in Audre Lorde’s metaphor, and thus to imprison ourselves more deeply in the master’s house.

Source: Throw Away the Master’s Tools: Liberating Ourselves from the Pathology Paradigm

It is also to acknowledge and discuss the fact that the disability rights movement has been having conversations about language and disability terminology for decades, and that many nondisabled people are (perhaps willfully) unaware of these conversations. They come up with complex and tormented euphemisms to talk about disability instead of just asking a disabled person if there’s an appropriate term. Many nondisabled people are shocked that many people with disabilities, including myself, view ‘special’ as a rank insult that is horrifying to encounter. This word makes me so angry. So angry.

Thus, when I say ”special’ troubles me,’ I mean ‘please do not use this term to refer to me, because I find it personally insulting, and I have an identity, that identity is disabled, please respect my identity by using the word I self identify with to refer to me’ and I also mean ‘I would vastly prefer that you consider not using it as a default/general term, but use it for self identification if you identify with it, and to describe other people who self identify with it.’ And, in return, if I know that someone identifies as special needs or with any other term involving ‘special,’ I will refer to that person that way, because I believe that respecting self identification is a critical thing. However, I note that I don’t personally know anyone who identifies with this term; I see it being used by nondisabled friends and family, applied as a label by others and not claimed as a self identification.

So, here’s what I, personally, don’t like about special: I feel like it’s an isolating word. I feel that the concept of ‘special’ stands in the way of full integration into society, and it also perpetuates some very harmful myths. It sets people with disabilities aside and stresses that they are different and alien. That using a wheelchair, for example, is ‘special’ and different and weird.

This word, to me, stresses a hierarchy of normality. And, thanks to the way that it has become twisted, it has become a singularly loaded word. Everything from ramps to quiet rooms for taking exams is considered ‘special treatment’ and sneered at. Nondisabled people think that we are pulling off some kind of giant scam here and that’s reinforced when we talk about, for example, ‘special education.’

The very idea that accommodations are ‘special’ stresses that they should not be expected. That they are a prize or treat. That you don’t deserve them. I want to see accommodations normalised. I want to see it assumed that everyone who wants to participate in something is able to do so, that no barriers are presented by other participants or the venue. I don’t want that to be ‘special.’ I want it to be ordinary.

Likewise, the idea of referring to human beings as ‘special’ is one I find troubling, not least because this term has become weaponised. I have trouble parsing whether it is being used as a celebration of identity or an insult whenever I encounter it.

Source: Ableist Word Profile: Special | FWD/Forward

The “special needs” language falls into normativity. There’s a “normal” and a “right” way to do things, and that way is how able people do it. If you don’t do it that way, suddenly it’s “special” because it’s different and scary.

“Special needs” is part of this dichotomy which is used to split able and disabled. Indeed, to alienate disability. Disability is different and “special” and hard and weird. “Special” is an isolating word, in fact, because it sets people apart, and not necessarily in a good way, no matter what the original meaning of the word is.

Think “special bus” or “special education,” both of which are used to isolate developmentally disabled folks from their peers, often under the argument that they are “hard to control” or “disruptive” or “upsetting” or, sometimes, just “gross.” People use “special” to push these folks away, to isolate them somewhere where they cannot bother the nice able people.

It’s one of the many euphemisms for disability which is used to create a veil of obscurity. Disability as Other. Indeed, “special needs,” a term which  people often use because they are fumbling for something else to use, looking for the “right” way to say it, is intensely othering.

Source: Needs Are Not Special | FWD/Forward

For one night, the special needs community will shine! And then the day after, they will go back to being ignored by much of their communities.

Here’s the real problem for me – why put this money behind isolated, segregated, events? I know Tebow et al. think they are doing good here, and I’m sure the people who go will have a good time. But it accomplishes nothing other than a brief moment of fake normality.

“Prom” didn’t matter to me, but to many people prom = normal highschool experience. So if people with disabilities are being excluded from such activities, if that’s something they want, then the solution is to put time and money behind making such events more inclusive and more accessible.

A segregated special event for special needs, no matter how well intentions, just reinforces the idea that people with disabilities cannot function in “normal” society.

Source: How Did We Get Into This Mess?:  Special Proms for Special Needs – Good Intentions but a Bad Idea

There’s a social media campaign going on right now to #SayTheWord – it was started by Lawrence Carter-Long, the Public Affairs Manager for the National Council on Disability, and is an active Twitter hashtag. The word, of course, is disabled.

The importance of this campaign is driven home to me over and over again as I see people performing ludicrous and painful contortions to avoid saying it. Reminder that when I make a criticism the way well-meaning people interact with disability, I am not attacking the people (parenthetical reminder that I was immersed in ableism myself not long ago), but inviting people to think about things in a different way.

Instead of saying disabled, nice people say things like:

  • differently abled
  • handicapable (yes, really)
  • physically/mentally challenged
  • special needs

It’s that last one, special needs, that I really want to take aim at, because I believe that seemingly innocuous phrase does serious damage to disability rights.

Every time someone says “special needs,” they reinforce the false notion that disabled people are asking for “extras” when we require accommodations, modifications, and/or support to access the same things that non-disabled people are able to access, such as education, public spaces, community involvement, and so on.

That’s the first problem, because access is not “special” for disabled people. It’s our right. The Americans with Disabilities Act of 1990, modeled on the Civil Rights Act of 1964, protects disabled Americans from discrimination, requires us to be accommodated in the workplace, and grants us equal access to public spaces and institutions. Other countries have laws in place to protect disability rights in similar ways.

The second problem is, the phrase “special needs” flies in the face of the social model of disability. The social model says, the disabled person’s inability to access things is due not to the disabled person’s failings, flaws, or deficits, but on the environment’s failure to provide access to the things. For example, a Blind person is not disabled because they can’t see, they are disabled because the world was set up by seeing people for seeing people and is made of many things that are inaccessible to non-seeing people.

Source: #SayTheWord, Not “Special Needs”

My son, who has Down syndrome, is 10. By the time he was 3 (thanks in part to spending his first few years reading everything I could get my hands on), it was pretty clear to me that while he had particular needs, they weren’t all that special. He needs an education, safe housing, independence, meaningful community, health care, and basically all the other stuff that everyone else needs. Our means to get him there might vary and require specific techniques, tools, and resources, but it’s not because his needs are so “special.”

Moreover, as a euphemism, “special” has become its own brand of insult. Anecdotally, I increasingly see people substituting the word where they might have used the word “retard,” because ableism can always survive the shifting of norms. “Special,” appended before “snowflake,” was the “defining insult” of 2016, according to The Guardian. “Special” connotes both undesirably different and unjustly self-centered.

In fact, there’s a broad cross-disability movement dedicated to working against euphemisms like “special needs” or “differently-abled.” While the origins of the expression “special needs” are complicated and debated, Rebecca Cokley, executive director of the National Council on Disability, explained to me that it’s clear “the term was never chosen by our community; it was chosen by educators, family members, and other professionals who felt uncomfortable by the use of the term ‘disability.’”

It’s not just about law, either. Lawrence Carter-Long launched the #SayTheWord campaign in 2016 to get people to use “disability” or “disabled” rather than dodging the issue. He told me that in the past, “Disability was only a diagnosis, but it now equals identity, it equals community, it equals history, it equals constituency. So part of saying the word is the recognition of the evolution of what the word has become.” He’s equally opposed to special needs, as a concept, because, “A need isn’t special, if other people get to take the same thing for granted.”

The #NotSpecialNeeds video doesn’t say the word disability, but I don’t know that it needs to do so. It’s an impressive piece of work, chipping away at the euphemism “special needs” with hilarity, positing scenarios that would qualify as special, like needing massages from cats or celebrities to conduct wake-up calls (the latter scene features John C. McGinley, the actor from Scrubs, whose son has Down syndrome).

Source: Stop Calling Some Needs ‘Special’

As Linton explains, “terms such as physically challenged, … handicapable, and special … are rarely used by disabled activists and scholars. Although they may be considered well-meaning attempts (by people without disabilities) to inflate the value of people with disabilities,” these terms “can be understood only as a euphemistic formulation, obscuring the reality” that disabled people are not “considered desirable.”

We predicted and observed that persons of all ages are viewed more negatively when they are described as having special needs than when they are described as having a disability or having a certain disability.

Our research supports many style guides (and disability scholars) who prescribe not using the euphemism special needs. In addition to its negative connotations, we argued special needs is imprecise; it can refer to groups as unrelated as minority and bi-racial children in the realm of child adoption; middle-age adults and persons without personal transportation in the realm of disaster preparedness; and pregnant women and people with nut allergies in the realm of airline travel).

Special needs also connotes segregation. Most special programs (e.g., Special Olympics and special education) segregate persons with disabilities from persons without disabilities. Special needs also implies special rights. In our research article, we pointed to an OpEd in The Chronicle of Higher Education that misconstrues legally mandated disability rights as special rights, as well as similar misconstruals observed in common vernacular.

We concluded that special needs has become a dysphemism, similar to lame (e.g., a lame idea), crippled, blind (e.g., blind to evidence), and deaf (e.g., deaf to reason). Our research did not explore whether non-disabled people’s use of special needs is intentional (although some instances clearly imply negative intentionality). Perhaps, as Simi Linton suggests, non-disabled people’s ambivalence about disability rather than sharp repulsion underlies their use of the term special needs. Regardless of speakers’ and writers’ motivation, our research recommends not using the euphemism special needsand instead using the non-euphemized term disability.

 

Source: Special needs, euphemisms, and disability

Although euphemisms are intended to put a more positive spin on the words they replace, some euphemisms are ineffective. Our study examined the effectiveness of a popular euphemism for persons with disabilities, special needs. Most style guides prescribe against using the euphemism special needs and recommend instead using the non-euphemized term disability; disability advocates argue adamantly against the euphemism special needs, which they find offensive. In contrast, many parents of children with disabilities prefer to use special needs rather than disability. But no empirical study has examined whether special needs is more or less positive than the term it replaces. Therefore, we gathered a sample of adult participants from the general population (N = 530) and created a set of vignettes that allowed us to measure how positively children, college students, and middle-age adults are viewed when they are described as having special needs, having a disability, having a certain disability (e.g.is blindhas Down syndrome), or with no label at all. We predicted and observed that persons are viewed more negatively when described as having special needs than when described as having a disability or having a certain disability, indicating that special needs is an ineffective euphemism. Even for members of the general population who have a personal connection to disability (e.g., as parents of children with disabilities), the euphemism special needs is no more effective than the non-euphemized term disability. We also collected free associations to the terms special needs and disability and found that special needs is associated with more negativity; special needs conjures up more associations with developmental disabilities (such as intellectual disability) whereas disability is associated with a more inclusive set of disabilities; and special needs evokes more unanswered questions. These findings recommend against using the euphemism special needs.

Source: “Special needs” is an ineffective euphemism | Cognitive Research: Principles and Implications | Full Text

They are not “special” needs. They are needs I have because of disability. Saying it differently doesn’t change the fact. Saying it differently actually perpetuates the stigma around disability, increases the likelihood people will continue to see me as other and broken, and decreases the chance my needs will be met.

Too often proclaiming a person has “special needs” is the trigger for people to give up, asserting that sometimes there is “just no solution” and that the disabled person will have to “learn to cope” and “develop their skills” so they can “fit in to society” and “have a hope of getting a job and making friends”. When in fact there is always a solution that respects the rights of the disabled person, and we regularly live meaningful valuable lives as ourselves without having to change and fit in to societies unrealistic expectations and arbitrary rules of existence.

All people have needs. When their needs are met, all people live their lives well. All people receive help to see their needs met from time to time. Our society works on shared ideas, spaces and resources. Assisting a non-disabled person to see their needs met is not perceived as heroic, patient or inherently good. It is called living life in community.

Source: My needs are not “special” – Michelle Sutton 

During these 12 years, many things have changed, my vocabulary too. I don’t use the word “normal” anymore, I use “typical”; I don’t use the word “special” anymore, I use “disabled”; I don’t use the word “gift” and I don’t consider my daughter as a superheroine; I’m not a “special mother” and my daughter is a girl with Down syndrome who lives her life with the same need to belong as everyone else. Euphemisms are not helpful so let’s call things by their name – disability #saythewordit’s what disability activists ask for. To tell it like it is allows me to look at things without hiding, to face life in a direct way. And it allows Emma to do the same. I feel as if I am respecting my daughter more, as if I am giving her the chance to define her own identity over time, of which disability is part.

Source: NotSpecialNeeds

Adults with disabilities ask that you say “disability” and not “special needs” when you are talking about disability. As Louisa Shiffer said,

Disabled people should control the conversation about their disabilities, and the language used about them, not their parents.

“Handi-capable”, “People of all abilities”, “Different abilities”, “Differently abled” and “special needs” were made up outside of the disabled community, by people without disabilities. Their continued use, and the defense of their use by people without disabilities reeks of able-splaining; that is, people without disabilities explaining disability to people withdisabilities.

Then the word “disability” makes complete sense. Those of us living with a disability are absolutely living a dual existence: we move through the mainstream world which is largely inaccessible and not disabled, and we have our own experience with the fact of our bodies.

We see, hear, speak, think, learn, process, read, write, move, and/or feel in ways that are less common than most. We have a lot to offer, by dint of our experience with disability and where our interests lie. Our needs are not special, so please: say the word, as we are asking you to.

Disability.

Source: 3 Reasons to Say “Disability” Instead of “Special Needs”

Why, oh why is this still such a common term? It makes no sense to me. By much the same logic that explains why “differently-abled” is inaccurate, it’s clear that “special needs” is too. If you are a human, you have needs. Everyone has needs. What makes mine so “special” just because I have a disability? Nothing.

My needs are not “special” just because they’re not met in ways identical to the needs of non-disabled people. I need a ramp; you need steps. Not special, just facts. I need a wheelchair; you walk. Not special, just facts. Moreover, the needs of non-disabled people certainly aren’t all met in the same ways. Just like every other living, breathing human being on this planet, I am a person who has needs that must be fulfilled in ways appropriate to my abilities.

Whether you’re disabled or non-disabled, I urge you to realize why euphemisms really aren’t a show of respect, no matter how well meaning your intent might be. They can be disempowering, patronizing, and even hurtful. So please, just call me a disabled woman, because that’s who I am, and that’s who I’m proud to be.

Source: 4 Disability Euphemisms That Need to Bite the Dust | Center for Disability Rights

“Special needs” is a patronising euphemism. Special, by definition, means “better, greater or different from what is usual”. In reality, ‘special’ in the context of “Special Needs” is a disingenuous use of the word. What people seem to mean when they say ‘special needs’ is that people with impairments require more attention, they are more expensive to care for and are more difficult to provide for than those without impairments. So what is the result? A situation where people with impairments are excluded because they have “special needs” they are more difficult than those without “special needs”.

However, in reality, we all share the same needs. Everybody requires water, food, shelter and love, in order to survive. In parts of Africa, we have seen disabled young people who have been isolated. They have had no food or drink and no love. These people are not special, their needs are the same as all of ours.

Despite the fact that the vast majority of people (including me) use certain terms with the very best intentions, sometimes it is counter-productive. Merely labelling a group of people – disabled people – as “special” implies they are recognised as being far different from everybody else. The consequence of this is that they will be treated differently, ensuring that the stigma (which exists in all cultures to varying degrees) remains. This is the opposite of inclusion, despite the fact that inclusion is often the aim when using the term “special needs”.

Terminology and language are so important: once we separate people in discourse and our minds, we then start to separate people in practice. History shows us that this is a dangerous thing to do.

Source: We need to rethink the term ‘special needs’ – here’s why — Disability Africa

I believe that a reason why, as a society, we have not embraced children with disabilities as full participants in our schools and communities has to do with the limitations of our own mental models around disability.

We have moved from hiding and institutionalizing kids to a world where children with disabilities are seen as special and placed in special settings and given special services with special caregivers and they, and their families, have become disenfranchised from the community at large and they have become in fact their own separate community.

I believe that “special” has become a euphemism for “separate,” and when we separate kids and we place them in separate settings and give them separate services we are teaching them that their place is over there, with people like them and not as part of the full community, and when young, impressionable children learn that their needs are too great that they are too different and that they don’t meet our very narrow definition of what normal is, this has a life-long effect on their ability to contribute positively to society.

Source: Isn’t it a pity? The real problem with special needs | Torrie Dunlap | TEDxAmericasFinestCity – YouTube, transcript

Although euphemisms are intended to put a more positive spin on the words they replace, some euphemisms are ineffective. Our study examined the effectiveness of a popular euphemism for persons with disabilities, special needs. Most style guides prescribe against using the euphemism special needs and recommend instead using the non-euphemized term disability; disability advocates argue adamantly against the euphemism special needs, which they find offensive. In contrast, many parents of children with disabilities prefer to use special needs rather than disability. But no empirical study has examined whether special needs is more or less positive than the term it replaces. Therefore, we gathered a sample of adult participants from the general population (N = 530) and created a set of vignettes that allowed us to measure how positively children, college students, and middle-age adults are viewed when they are described as having special needs, having a disability, having a certain disability (e.g., is blind, has Down syndrome), or with no label at all. We predicted and observed that persons are viewed more negatively when described as having special needs than when described as having a disability or having a certain disability, indicating that special needs is an ineffective euphemism. Even for members of the general population who have a personal connection to disability (e.g., as parents of children with disabilities), the euphemism special needs is no more effective than the non-euphemized term disability. We also collected free associations to the terms special needs and disability and found that special needs is associated with more negativity; special needs conjures up more associations with developmental disabilities (such as intellectual disability) whereas disability is associated with a more inclusive set of disabilities; and special needs evokes more unanswered questions. These findings recommend against using the euphemism special needs.

Source: “Special needs” is an ineffective euphemism

https://twitter.com/Lollardfish/status/844278898833657856

https://twitter.com/Lollardfish/status/844211634511994882

https://twitter.com/Lollardfish/status/832576869014855681

See also,

Identity First Language

One the left is a stick figure with the head colored with rainbow colors and the caption "Autistic Person" below the figure. On the right is a stick figure carrying a suitcase colored with rainbow colors with the caption "Person With Autism" below the figure.

“People-first” language is meant to divide, it is meant to demean, it is meant to dehumanize, it is meant to pathologize, and yet, it is meant, as I said before, to make its users feel good. In that way it is ultimately destructive because it covers up the crimes.

Only when people get to choose their own labels will we get anywhere toward building an equitable culture.

If we convert horrid prejudices into pleasant sounding phrases, we diffuse those prejudices as an issue.

Source: Using “Correct Language” And “People First” by Ira David Socol — Bowllan’s Blog

Updated version available

An updated version of this article is available at Stimpunks Foundation.

I’m autistic, not a person with autism. Autistic is my identity.

I’m a disabled person, not a person with disabilities. Disabled is my identity.

Identity first language is common among social model self-advocates. When hanging out in social model, neurodiversity, and self-advocacy communities, identity first is a better default than person first. Every autistic and disabled person I know uses identity first language. The words autistic and disabled connect us with an identity, a community, and a culture. They help us advocate for ourselves.

Disability’s no longer just a diagnosis; it’s a community.

There’s a language gap between self-advocates and the institutions that claim to represent us. There’s a gap between parents and their #ActuallyAutistic and disabled kids. There’s a generational gap in the disability movement. This is confusing for those trying to be allies. The articles, videos, and tweets below offer perspective and advice on identity first and person first language from self-advocates. At the end, I collect tweets from autistic and disabled people in a Twitter moment. Witness and respect these perspectives.



But please realise this: when autistic adults offer their experiences or insight, consider listening. We do not speak for your child, but we’re not really all that different from them. Telling us we’re “not autistic enough” insults us and trivialises the hardships many of us have endured. Hardships that, yes, may be very different from what your child might experience, but hardships nevertheless. I’ve earned the right to label myself as autistic. It explains everything. It is not all that I am, but it defines so much of who I am.

And that is why, for me at least, the identify label comes first. That I’m still a person should be obvious.

Source: Dear Autism Parent | The Misadventures of Mama Pineapple

When you excise a core defining feature of a person’s identity from their living, breathing self, you sort of objectify them a bit. And you make that core defining feature optional. Because it can be safely removed, and they’re still a person. Right? Well, a person, yes — but not the sort of person they know themselves to be. And not the sort of person you can truly get to know. Because you’ve denied one of the main characteristics of their nature, out of an intention to be … compassionate? Dunno. Or maybe sensitive?

Whatever the original intention, the effect is just a bit dehumanizing. And a lot of us don’t like it.

So, if you’re into PFL – person-first language – please reconsider before you use it regarding autism. Cancer is one thing. Plaque psoriasis is another. Autism… well, that’s in a league all its own. And I wouldn’t leave that domain for all the money (or well-intended compassion) in the world.

Source: The cognitive dissonance of “person-first” references to #autistic people – Happy, Healthy Autist

Though person-first language is designed to promote respect, the concept is based on the idea that disability is something negative, something that you shouldn’t want to see. After all, no one tells me that I should call myself a person with femaleness or a person with Jewishness. I’m a Jewish woman. No one questions that. Yet when I dare to call myself a disabled person, it seems the whole world turns upside down. That’s because gender and religion are seen as neutral, if not positive, characteristics. The idea of separating the disability from the person stems from the idea that disability is something you should want to have separated from you, like a rotten tooth that needs to be pulled out.

Disability is only negative because society makes it so. For sure, there are negative aspects of my disability. (For the sake of simplicity, I’m focusing solely on my physical disability, which is both the most visible and the most integrated into my being.) Chronic pain and fatigue are no picnic. But for the most part, my disability is just another thread in the tapestry of my life. Pull it and the whole thing might unravel. Pull it and you might get an ugly hole where something beautiful once was.

Identity-first language is founded upon the idea of the social model of disability. In a nutshell, the social model says that though our impairments (our diagnostic, medical conditions) may limit us in some ways, it is the inaccessibility of society that actually disables us and renders us unable to function. The most basic example is wheelchair accessibility. If I am using my wheelchair and I can’t go to a restaurant because it doesn’t have a ramp, am I disabled by my cerebral palsy or am I disabled by the inaccessibility of the restaurant?

If that restaurant has a ramp, I am able to function perfectly within that situation. I am able to go in, sit at a table, order my food, eat it, and pay, just like everyone else. My wheelchair is not the problem. The inaccessibility of the restaurant is. Saying that I am disabled more accurately highlights the complex biosocial reality of disability. I am not merely a person existing with a label; I am constantly disabled and enabled by the interplay of my body and the environment.

Source: I am Disabled: On Identity-First Versus People-First Language

Taking a cue from the radical Deaf community, ANI members began to refer to themselves as “Autistic” instead of saying that they were people with autism. “Saying ‘person with autism’ suggests that autism is something bad—so bad that it isn’t even consistent with being a person,” Sinclair observed. “We talk about left-handed people, not ‘people with left-handed- ness,’ and about athletic or musical people, not about ‘people with athleticism’ or ‘people with musicality’ . . . It is only when someone has decided that the characteristic being referred to is negative that suddenly people want to separate it from the person.”

Source: The Dawn of Autistic Space – Excerpt from NeuroTribes – Wrong Planet

If you have even the slightest familiarity with the societal discourse on autism—whether you’ve learned about autism in an academic or professional setting, or just been exposed to discussions about it in the mass media—you’ve almost certainly encountered person-first language. That’s where instead of simply referring to autistic people as autistic people, folks use grotesque and needlessly cumbersome phrases like people with autism, children who have autism, individuals experiencing autism, or adults living with autism.

Person-first language is rooted in autistiphobia and anti-autistic bigotry, and its use is widely recognized by most of the autistic community as being a reliable indicator of autistiphobic attitudes. The reason that person-first language is so prevalent in our society’s discourses on autism is that those discourses have always been dominated by the voices and viewpoints of autistiphobic bigots. From the 1930s through the present day, the vast majority of the non-autistic people who’ve written about autism or done any sort of autism-related work have held deeply ingrained autistiphobic attitudes. The language used in their work reflects those attitudes.

The use of person-first language when talking about autistic people is so prevalent and so widely accepted that most non-autistic folks don’t think twice about it and don’t even recognize it as the language of bigotry and stigma. The autistiphobic bigotry inherent in person-first language doesn’t become obvious until you listen to how it sounds when you use that same sort of language to talk about members of other historically oppressed and marginalized groups.

Source: PERSON-FIRST LANGUAGE IS THE LANGUAGE OF AUTISTIPHOBIC BIGOTS • NEUROQUEER

In the case of “People First” language for those with disabilities , what we have is not belief in linguistic emancipation, but a desire to “change something” in order to make educators feel responsive. Special education services haven’t changed much at all in the past 40 or 50 years – we use the same deficit model, we use the same types of assessment, we still flail around with school-generated solutions which foster dependence – but we can see we have “evolved,” no retards, no cripples, no morons, hey “we’ve changed since the bad old days.”

But disability remains a social identity. To work from Tom Shakespeare, it is the intersection of ability and the social structure. There is no such thing as a legitimate way to define “normal.” After all, if there were, the bizarre global minority of humans without black hair and brown eyes would be considered freaks. So, society defines certain people as outside of normal, and they do that with words.

For some groups, the hyphenation strategy is reached, be it “Scotch-Irish” or “African-American” or even “Student-Athlete,” but for others, where a real belief in pathology remains, we keep the “person with” structure. A student with the swine flu. A student with cancer. A student with a learning disability.” We don’t hyphenate any of those because we do not accept them as cultural identities, rather, we view them as illnesses.

So call me “dyslexic,” and call me “multi-attentioned” (or something), but stop pathologizing me. I don’t “have” these things, I “am” these things, because your society has made it that way.

I believe that we have to challenge accepted strategies and ideas. And whether you call it “Normalism” or “Disablism” we need to understand how narrative impacts cultural belief. If we convert horrid prejudices into pleasant sounding phrases, we diffuse those prejudices as an issue. So, since you treat me as if I am “retarded,” please don’t hide behind your nonsensical, “Student with Learning Disabilities.” That language might make you feel better, but it does nothing for me.

As long as you consider one way of doing things “normal,” you will demean me and treat me as less than fully human. What I was trying to say in this post –in a way which would provoke conversation – was that the very concept of “accommodation” is so very wrong, because it is based in disablism – the belief that I and others are not, and will never get to be, “normal,” unless “you” cure me by making me like you.

“People-first” language is meant to divide, it is meant to demean, it is meant to dehumanize, it is meant to pathologize, and yet, it is meant, as I said before, to make its users feel good. In that way it is ultimately destructive because it covers up the crimes.

Only when people get to choose their own labels will we get anywhere toward building an equitable culture.

Source: Using “Correct Language” And “People First” by Ira David Socol — Bowllan’s Blog

When ABA proponents tell parents that only several hours a day of relentless compliance training can “make us fit for society”, they are not seeing a person. They are seeing a problem, a defect. Yet they insist on Person First Language.

When we are abused, and murdered, the perpetrators don’t think we are “much more than autism”. They use Person First Language and forget our humanity.

Or maybe they are trying to beat, stab, suffocate or shoot “the autism” out of us.

When the media blame us for our own murders, by pointing out how “tragic” and “pitiful” our lives are, they use Person First Language to point out how non-persons we are. This is dehumanization.

When the media and some “experts” speculate that a mass murderer might be Autistic, they use Person First Language to say autism makes people evil. To them, that’s all we are.

Person First Language is not about “seeing a person before the diagnosis”, or about “seeing much more than the diagnosis”.

Person First Language is about putting as much distance between the person and “the autism”. It is the opposite of acceptance.

It is like a contest to see how many ways one can talk about Autistics without using the word “Autistic”.

This is how Person First Language proponents refer to us:

“Person with autism”

“Person has autism”

“Person on the autism spectrum”

“Person with a diagnosis of autism spectrum disorder”

Each time, they come up with a longer description that starts with “person” and ends with “autism”.

It would be much more inclusive, and respectful of our voices, to simply say “Autistic”. It is simple and direct. It does not waste words, it is easily understood. More importantly, it is the most accurate description of who we are.

Source: The Gymnastics of Person First Language • Ollibean

In that wave of claiming who we are, from our perspective—in our proclaiming of what it is actually like to live as an autistic individual—many autistic self-advocates have embraced the word ‘autistic.’ In this way, we are not running from the degradation and falsehoods, but proudly proclaiming: “I am autistic.” It may seem counter intuitive. But indeed, the act of accepting the word “autistic,” in and of itself, makes something once untouchable—now held. For you see autism is not a disease—though many think it so, or at maximum treat autism like a plague to be eradicated.

The issue we take, in most circles of Aspergerians and Auties, is with the trials and tribulations parents face and share publicly in raising such “anomalies” (children with autism). Interestingly enough, if you listen with intent, you will note that the autistic parents of autistic children aren’t complaining publicly about the woes of being a parent of a child with autism. We aren’t declaring how hard it is to be a parent of a child with autism. Nor are we seeking sympathy. We understand what our child is experiencing. We understand the torment of living in a world, where you not only feel like you don’t belong, but are told from the authorities that be (parents included) that your condition, your being, your very existence has “affected” everyone around you.

I am defined by autism because I want to be, because by embracing my autism I am embracing myself fully. I cannot separate the way my brain works from the rest of me. I leave it up to my son about how he wants to define himself. I will never tell him how to perceive autism. I imagine his perception will be ever-changing.

I have not and will not proclaim my family was affected by my son’s autism; nor will I say my son is affected by the trials that come with autism. There is not some outside boogeyman disease, illness, or even condition making our life hard. Life is just hard, sometimes

Source: “Affected” by Autism – Everyday Aspie

When you use person-first language, you are literally separating me from my identity, deliberately distancing me from an integral aspect to who I am. It feels like someone is dissecting me.

There’s this idea that we’re given more respect if we separate our disability or disabilities  from our personhood, that the more distance we place between ourselves and our disability, the more respect we’re given. This very idea is rooted in ableism.

Also important to note is that whether I’m called a Disabled person or a person with a disability, I am treated with the same level of disrespect.

When people continue to separate our disabilities from our personhood, they aren’t thinking about how our disabilities impact our personhood and how its viewed by others.

My friend Eb on Twitter worded it best, people shouldn’t need to use person-first language in order to be reminded that we’re human beings deserving of respect and rights and that we also have other identities.

I think that when people insist on saying “but you’re a person first!” and that people don’t acknowledge my disability first, that can lead to accommodations being an afterthought. When folks continue to separate my disabilities from my personhood, they aren’t thinking about what accommodations I need because they’re too busy trying to NOT think about my disabilities.

Source: 8 Reasons I Prefer Identity-First Language | Journey of IsaJennie

I don’t have autism. I am autistic.

That’s a thing I’ve been saying forfuckingever. And yet people keep insisting on pointedly saying that I and others “have autism”, are “individuals who happen to have autism”, are “living with autism”, or the ever popular “are individuals who just happen to have autism”.

Those are a lot of words just to deny a fundamental part of who I am, huh? It’s like people think if they wedge enough words between their identifier noun and the word autism, they’ll pry the condition off of us.

I know that y’all are taught person first language, and many communities prefer it and I support that. But the purpose of person-first language is to respect the person you are describing. Ask them what they prefer. I, and many MANY other autistic people, prefer to be called autistic, not “living with autism” or “having autism” or “an individual who happens to have an intimate neurological understanding from living with autism” or whatever.

Source: Radical Neurodivergence Speaking: I don’t have autism. I am autistic.

I don’t have autism. I am autistic. This is important to me. It also doesn’t mean that I “see myself as a disability first and a person second,” whatever that is supposed to mean. In my eyes, I’m Julia. Just Julia.

I cannot separate out which parts of me brain are wired because baby I was born this way and which parts of my brain should be marked off as AUTISM. Nor do I particularly care, to be honest.

Being autistic fundamentally shapes how I perceive and interact with the world, with a million cascading and subtle consequences. I would not be the same Julia I am now without whatever parts of my brain can be marked as AUTISTIC (and that’s bad science in the first place, the brain is a whole lot more complicated and subtle than that, we know that there isn’t one gene or one wiring variation that leads to autism).

I am not flattered when you say that I don’t really see you as autistic or it’s just a label.

Because what you mean is that “I don’t really see you as Bad right now,” and while I am incredibly grateful for that safety, I am also furious that autistic means Bad at all in the first place and that I feel I have anything to be grateful for in that entire situation.

It is, indeed, just a label. One without nearly the neutrality of, say, Campbell’s Chicken Soup. All your wishing in the world won’t change that, and taking away the words I have for my experience just hurts me so you can feel a little more enlightened.

Source: Dear “Autism Parents”, | Just Stimming…

“Autistic”, or “with-Autism”? I had to decide this for myself quite some time ago, after a great deal of thought, since there are positives and negatives to both methods. Finally, it boiled down to one factor: communication. What does each say to the listener? What does each say to me? And to what effect?

There are basically three groups who would, sensibly, prefer person-first language for autism. First, those who want to appear to care. Person-first language implies that you don’t blame the person-with-autism for being they way he is. That you are presupposing that the autism made him do it – whatever it is – and everyone should cut him slack. However, it also implies that he will so certainly fail to behave acceptably that you want to get out in front of his failure and forgive him in advance. Person-first language protects this group from having to internalize the idea that people can be radically different, while still deserving complete acceptance as they are. Or it’s simply a shorthand for “you’re damaged and inferior, but we forgive you.”

Second, there is group that believes that autism is something you catch. Like a virus. Or that it’s the result of an accident that suddenly injured you. They believe that it is simply a matter of time and effort before you are relieved of your autism, and that you will be just like you are now – just with all the problems removed and the nice parts remaining. This perspective is generally the result of failing to accept that your child is not just a poor substitute for the “real” child you believe you deserve. Person-first language protects this group from reality.

Finally, of course, there are those who, for their own practical reasons, prefer to preserve the illusion that autism can be removed from a person like a stain, leaving a pristine child ready to please his parents and join mainstream society invisibly. Some of these people have created images of themselves as beacons of hope with many books and speeches and postings, some as cutting edge researchers into a cure or the cause, some as major movers-and-shakers in the industry who may – any day now – slay the dragon. Person-first language preserves the delusion these people succeed within.

In all these cases, person-first language is used to hide the truth. And in none of these constructs is the autistic actually the primary beneficiary of the charade. Person-first language used as a default by anyone but the autistic himself is always selfish.

And always demeaning. The overwhelming message of “person-with-autism” is always “we wish we could really remove the autism from you, because it’s offensive, and we’re sure you’d be more acceptable without it.” Of course, it can’t be removed. At least not in the near future. So, until then, the autistic is stuck with his unacceptableness, no matter how kind and apologetic the label appears to others.

When you use person-first language, you create and then highlight a failing, a disappointment, a limitation. When I declare myself as an autistic, I acknowledge my difference as an acceptable part of my self-identification at the outset, and challenge you to do so too.

Source: Autism First (Again) – Turtle moon

I would argue that “person with autism” risks misrepresenting the nature of the condition. It implies that autism is an attachment, like a torn ligament or a brain tumour, which can be isolated and removed without otherwise affecting the individual, when to my mind autism is intrinsic to the person’s identity.

Another flashpoint is the word ‘suffering’. One of the surest ways to raise the hackles of the autism community is to write or say that somebody “suffers from” autism or Asperger’s syndrome. I’ve read and heard two examples of this in the last fortnight alone. There are two conflicting responses here: on the one hand it’s insulting to people who get by reasonably well although they have some form of autism, and yet on the other there are autistic people who quite evidently do suffer, and we shouldn’t shy from saying so. The key point, I think, is that while they may suffer from depression, from isolation, from short attention spans or from an inability to express themselves, saying they “suffer from autism” is aggravating to people who have worked hard to overcome the more debilitating aspects of the condition. It also puts a too simplistic gloss on the way people experience autism, since a strong adherence to routine can be comforting, and even rewarding, in the right context.

Source: Autistic Dad: On Language

Though it is common for medical and cure-focused communities to refer to an autistic person as a person with autism, such references are not the lingo of the greater whole of the Autistic Community.

In a nutshell, saying a person has autism may imply that the person is defective or that there is an inherent problem or sickness within the person. It also implies that autism can somehow be separated from the person.

Being a deaf person, as well as a member of the Deaf community, I prefer to be referred to as Deaf. This is preferable to me rather than the terms “hearing impaired” or “person who has deafness.” I don’t have deafness, I am deaf. For me, it is the same with autism. I don’t have autism, I am autistic. Since I do not view my deafness and autism as negatives, I use language that puts me in the direct light of both autism and deafness.

Source: Aspitude!: Autism-first Language

Saying “person with autism” suggests that the autism can be separated from the person.  But this is not the case.  I can be separated from things that are not part of me, and I am still be the same person.  I am usually a “person with a purple shirt,” but I could also be a “person with a blue shirt” one day, and a “person with a yellow shirt” the next day, and I would still be the same person, because my clothing is not part of me.  But autismis part of me.  Autism is hard-wired into the ways my brain works.  I am autistic because I cannot be separated from how my brain works.

Saying “person with autism” suggests that even if autism is part of the person, it isn’t a very important part.

Yet autism goes deeper than culture and learned belief systems.  It affects how we relate to others and how we find places in society.  It even affects how we relate to our own bodies.  If I did not have an autistic brain, the person that I am would not exist.  I am autistic because autism is an essential feature of me as a person.

Saying “person with autism” suggests that autism is something bad–so bad that is isn’t even consistent with being a person.

It is only when someone has decided that the characteristic being referred to is negative that suddenly people want to separate it from the person.  I know that autism is not a terrible thing, and that it does not make me any less a person.  If other people have trouble remembering that autism doesn’t make me any less a person, then that’s their problem, not mine.  Let them find a way to remind themselves that I’m a person, without trying to define an essential feature of my personhood as something bad.  I am autistic because I accept and value myself the way I am.

Source: Why I dislike “person first” language by Jim Sinclair – Journals – CafeMom

In the autism community, many self-advocates and their allies prefer terminology such as “Autistic,” “Autistic person,” or “Autistic individual” because we understand autism as an inherent part of an individual’s identity — the same way one refers to “Muslims,” “African-Americans,” “Lesbian/Gay/Bisexual/Transgender/Queer,” “Chinese,” “gifted,” “athletic,” or “Jewish.” On the other hand, many parents of Autistic people and professionals who work with Autistic people prefer terminology such as “person with autism,” “people with autism,” or “individual with ASD” because they do not consider autism to be part of an individual’s identity and do not want their children to be identified or referred to as “Autistic.” They want “person-first language,” that puts “person” before any identifier such as “autism,” in order to emphasize the humanity of their children.

Because when people say “person with autism,” it does have an attitudinal nuance. It suggests that the person can be separated from autism, which simply isn’t true. It is impossible to separate a person from autism, just as it is impossible to separate a person from the color of his or her skin.

Autism, however, is not a disease. It is a neurological, developmental condition; it is considered a disorder, and it is disabling in many and varied ways. It is lifelong. It does not harm or kill of its own accord. It is an edifying and meaningful component of a person’s identity, and it defines the ways in which an individual experiences and understands the world around him or her. It is all-pervasive.

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 favor 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 ASD” demeans who I am because it denies who I am.

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, to overcome challenges and disability, and to 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.

Source: Autistic Hoya: The Significance of Semantics: Person-First Language: Why It Matters

“Autistic” is another marker of identity. It is not inherently good, nor is it inherently bad. There may be aspects or consequences of my identity as an Autistic that are advantageous, useful, beneficial, or pleasant, and there may be aspects or consequences of my identity as an Autistic that are disadvantangeous, useless, detrimental, or unpleasant. But I am Autistic.

These are not qualities or conditions that I have. They are part of who I am. Being Autistic does not subtract from my value, worth, and dignity as a person. Being Autistic does not diminish the other aspects of my identity. Being Autistic is not giving up on myself or limiting myself or surrendering to some debilitating monster or putting myself down. Being Autistic is like being anything else.

Person-first language is a form of hypocrisy. Its strongest advocates are non-disabled parents and professionals, very well-meaning people who love their friends and family members and students deeply and who want to do right by them by treating them as human beings. But if a fairly large number of us to whom this type of language refers find it objectionable, why are we told “Well I respect your opinion, but I think person-first language is more respectful.”

Why is it culturally appropriate and typical to accept race, religion, and nationality as markers of identity that ought to be designated with proper adjectives that (in English) precede the noun “individual” or “person” and not those that fall under the category that we call “ability?” Is it a reflection of a secret fear of the non-disabled of people who are not like them, or is it a reflection of the inhibiting fear of offending one of us? As most of us prefer to identify with proper-adjective language (disabled or Autistic), using this language is highly unlike to offend. Asking me, “So you have autism?” will almost always produce a wince and a cringe. An identity is not something that I have. It is who I am.

Source: Autistic Hoya: Identity and Hypocrisy: A Second Argument Against Person-First Language

Language around disability is complicated and there is currently no universally accepted term. Even the terms that are considered most acceptable like people with disabilities (in North America) and disabled people (in the UK) are not universally accepted by people in those locations. In order to be respectful it is usually inoffensive to default to the most acceptable term based on your location. However, if a person expresses an alternate preference, it is extremely rude and disrespectful to insist that they conform to the dominant preference. Best practice would be to utilize the term that the individual prefers.

Source: Could You Please Stop Insisting that People Have to Use Person First Language | crippledscholar

The golden rule of disability language has been that the person should come first in phrasing, preceding the condition that disables them. For example, people who have diabetes aren’t “diabetics” in respectful usage but instead are “people with diabetes.” But developmental conditions and those related to the brain are a trickier territory. With a nod to Francis Crick, if your brain is you and you are your brain (with some guidance from your endocrine system and your environmental inputs), then how appropriate or even rational is it to separate the person and the condition? Many people want to say “person with autism,” but to a lot of autistic activists, that phrasing is silly, like saying “Person with Brain.” For them, autism and brain and themselves are all one and the same. Autistic activist Jim Sinclair wrote in 1999 about instead using “identity first” language. The Autistic Self Advocacy Network also features an essay by autistic activist Lydia Brown, elaborating the concept. That doesn’t mean, of course, that every autistic person prefers that phrasing, and it’s always best to go with what any individual with a condition expresses as their preference.

Source: 7 Things You Need To Learn About Autism

For anyone who has been around Autistic communities, or is Autistic themselves, one of the first things they may notice is the different ways in which we are referred to. Some will  say, “has autism/person with autism/people with autism”, whilst others will say, “is [an] Autistic/Autistic person/Autistics”.

These descriptions cover two broad categories of language: identity-first language, and “person-first” language. In my blog (and outside of it), I pretty much entirely refer to myself as “Autistic”, rather than a “person with autism”. Some people wonder why I choose to “label” myself. These people have probably been taught most of their lives that person-first language is the correct way, and that anything otherwise is inherently disrespectful. This could not be further from the truth. I and many other Autistic advocates, particularly those who support the neurodiversity paradigm, use identify-first language. In fact, I, for one, see person-first language as disrespectful, demeaning, and ableist.

Something that I see a lot of well-meaning non-autistic folks say to their Autistic children, siblings, relatives, or friends, is “you are more than autism”, or, “you are not autism, you are still yourself”, or, “don’t let autism define who you are”. Many of these same people insist on using person-first language, because they deem it somehow superior.

Despite that these people mean well, and want the best for their children, these quotes, and “person-first language” are ultimately harmful and damaging: damaging to the child’s self-esteem, giving them the pressure to be “more than autism”, whatever that even means. It is also damaging to the rest of the Autistic community, implying that autism makes a person less. “Person-first language” was not created by Autistics to begin with.

The first claim, that Autism can be separated from the individual, is complete nonsense. Autism is the way our brains are wired. Autism shapes our perception, the way we see the world, as well as how we think and feel. A lot who talk about “curing” autism seem to forget that doing so would completely change who we are as human beings. We would no longer be the same person. Autism is SUCH an integral part of who we are, and to take it away, to take our minds and how we think away, would make us lose our personhood. Back when I used to hate who I was (again, because of people sending a subliminal message that autism is a bad thing), I thought back on what my life would be like if I was non-autistic. I realized that I would not be the same person at all. Sure, I may not have had some of the bad experiences I’ve had, but I would also not love the things I love, believe the things I believe, and I also would not have many of the skills and talents I possess; at least not to the same level. I would be a completely different, foreign person. I wouldn’t even recognize myself.

As many Autistic individuals have experienced, when I stopped hiding myself – when I no longer concealed the fact that I’m Autistic, and when I embraced that part of my identity, that is when I suddenly became a lot more confident in my abilities. I started to like myself, recognizing my strengths, while working on my shortcomings.

If an Autistic person asks me to use person-first language, I will respect their wishes and do so for them. However, we shouldn’t be teaching Autistic kids to distance themselves from their autism. We shouldn’t be telling them they’re “more than autism”. We should be telling them that they’re Autistic, and teach them to be proud of their identity and neurology, and celebrate who they are.

Source: Actually, I Do Let Autism Define Me: Identity-First Language – The Autistinquisitor

The neurodiversity approach has important implications when it comes to language. A lot of people (typically neurotypical people who are helping or caring for autistic people) support ‘person-first language’ to describe autism. This means referring to someone as a person before stating their disability, a “person with autism”.

You might have noticed that I do not use person-first language. What I use is called ‘identity-first language’. This means referring to autism as an aspect of someone’s identity, an “autistic person”.

People who support person-first language say that no-one should be defined by their disability, that they are a person before they are anything else. It sounds like a noble aim, and they generally have good intentions. The trouble is, the very idea that person-first language is necessary comes as a result of the medical model of disability. It’s bad to define a person by their disability if you think a disability is inherently a bad thing.

Identity-first language accepts that neurological differences and impairments are not inherently positive or negative, they are just aspects of a person’s identity. You wouldn’t dream of saying “a person with homosexuality”, would you? Because that implies that being gay is negative, as well as something that could even theoretically be separated from the person.

The neurodiversity approach says that being autistic is comporable to being gay. It’s an identity, and a natural and value-neutral aspect of human variation. And autistic people should be accepted and accommodated in the same way as gay people. If there are problems associated with being autistic (or being gay), like finding it difficult to communicate (or finding it difficult to get married) – those problems should be accommodated by society.

When you use person-first language, you are saying “Being autistic is entirely and inherently negative”, and “Being autistic makes you less of a person”, and “I have to be reminded that autistic people are human”. Please stop saying those things to us.

Source: Neurodiversity, language, and the social model | autisticality

After more than 20 years, when I was in my mid-40s, I left Independent Living Center work, partly because I wanted to explore disability culture and activism in other ways, especially online. One of the first things I found was that in the 2010s, the most interesting disabled people out there said that they were “disabled people,” or just “disabled,” and called it “identity first” language. This was in direct opposition to “person first.”

I was relieved. “Disabled” is much smoother to write and say than “person with a disability.”

The more I thought about it, “identity first” language started to again change how I thought about my disabilities. I stopped worrying about whether or not my disabilities “define” me, and started to embrace the fact that like it or not, I am part of a community, a shared identity. I’m disabled. And I do like it.

There are strong links between language about disability and thinking about disability, both in my own life and in the broader disability community. As tiresome as it can be to keep up with all the ways of thinking about disability language, it helps describe and shape who we are. Today, I find myself more comfortable with my disability identity than I have been since childhood, and much more empowered and proud.

Source: My Journey with Disability Language and Identity

If you are not Disabled and you are demanding the use of Person First Language (PFL), you are being ableist.

If you are Disabled and you are demanding that other Disabled people use Person First Language, you are being ableist.

If you are Disabled and want to use Person First Language when referring to yourself, I will respect that. I will also respect your right to demand that other people use Person First Language when referring to you.

But the Person First Language concept is ableist, and I can tell you why.

I do know the history of PFL. I also know that it was co-opted by non-disabled people who believe they are the authorities in what we should say and how we should identify ourselves. And that is the definition of ableism.

“If you “see the person not the disability” you’re only getting half the picture. Broaden your perspective. You might be surprised by everything you’ve missed. DISABLED. #‎SayTheWord

I want to debunk the notion that by using PFL society treats us better. If anything, it helps with the stigmatization of Disabled people. Instead of “seeing” us, society ignores us, we become “voiceless” and “invisible”. There: debunked. But there is more.

Do you, PFL proponent, really see me (only me) and not my disability?

If your answer is yes, you are being ableist because you ignore an important part of me. If you ignore my disability, how are you being an ally – as you claim – and how are you going to support me (and all Disabled people) when we demand to be heard?

If you insist that you will support us, and continue to use PFL, you are being ableist because I (and many others) already said that respecting us means listening to our preferences, instead of demanding that everyone uses a language that we reject. You make it all about you, your preferences, your choices. How is this respecting me (and all Disabled people)?

Acceptable to whom? This is the greatest example of PFL as ableist language. It is silencing. It says non-disabled people are the ones who know what is “better” for Disabled people. It says that we, Disabled people, are non-persons who cannot define ourselves. It makes the choices of non-disabled people for disabled people, “official”. PFL is not acceptable to me, and it is not acceptable to a lot of Disabled people. If you claim to be an ally, if you claim to use PFL because you respect us as people, you are NOT respecting us.

If you insist in using PFL because you don’t want to create “controversy” and defy the ableist society, if you use PFL because it is more comfortable to you, you shouldn’t claim to be an ally or advocate.

Source: “Person First Language and Ableism”

I’ll be damned before they separate me from my autism too. I’m autistic. I’ve always been autistic. There has never been a me before autism. All parts of me are autistic as hell and I wouldn’t have it any other way.

My autism doesn’t reduce me at all. My brown skin doesn’t reduce me at all. Ignoring these these parts of me do, because they make me myself. My autism and brown skin affects how I see the world and how the world sees and treats me. Neither my race or my autism are invisible to the world, I promise. They affect everything. Pretending that they do not matter means erasing the reality I am experiencing and that is dangerous to me. Until you see all of me, you do not accept or respect me at all. And if you don’t? Well, then I am likely to lose any interest in you.

Before I found out I was autistic, I wasn’t able to see myself clearly. I already knew myself like no other could, but I didn’t understand myself the way I do now. I didn’t have a community where I actually belonged. These things mean a lot to me, and because of them I am in a better place now. And it’s all because I learnt that I am autistic. Therefore, this label means a lot to me. I never want to be separated from it ever again.

Source: Identity first: I want you to see all of me | Asymmetra

Identity-first language places the disability-related word first in a phrase. People who prefer identity-first language for themselves often argue that their disability is an important part of who they are, or that they wouldn’t be the same person without their disability. For some people, identity-first language is about a shared community, culture, and identity. Identity-first language is also about thinking about disability as a type of diversity instead of something to be ashamed of.

Some communities that use identity-first language are the Autistic, Deaf, and Blind communities. Other people might use “disabled person” instead of “person with disabilities.” Specific people might refer to themselves differently than most members of their communities, so it is a good idea to ask a person how they identify if you are writing about them or introducing them.

Source: Identity-First Language | Autism Acceptance Month

Here’s a simple breakdown of IFL and how it’s used:

  • “Disability” and “disabled” are indicators of culture and identity. Thus, “disabled person” is an accepted term.
  • Within the Autistic community, IFL is widely preferred and often consciously chosen, because Autism is considered an identity. That is, you’d say “Autistic person” instead of “person with autism.” In this way, being autistic is regarded as a facet of one’s identity – a neurological state of being – and not as a source of shame.
  • A similar line of thinking is followed by many who are Deaf. While some people identify only as little-“d” deaf (referring to a physical state of being), others capitalize the “D” to indicate being Deaf as a culture and identity. So, using the principles of IFL, one would say “d/Deaf person.
  • These same concepts do not apply when it comes to the use of a term strictly for its medical definition. For instance, it is never okay to say something such as “Down syndrome person” or “cerebral palsy person.” Here, you’re referring to a person by diagnosis, which is perceived as dehumanizing.
  • Likewise when it comes to mobility equipment. It’s completely inappropriate to call someone something such as “wheelchair person.” (Sadly, I’ve been called this several times.) Instead, you would say “wheelchair user.”

Source: Person-First Language Doesn’t Always Put the Person First

Identity first: as in disabled person (as opposed to person with a disability) was originally conceived to challenge the medical view of disability and replace it with a socio-cultural view. It wasn’t people’s diagnoses that were the problem, it was society. Society was the main cause of disablement. Saying you were a disabled person was originally not about identity at all it was an acknowledgement that society was the predominant cause of barriers for people with impairments (see my post here for a more in depth breakdown of the social model of disability). It was a way of calling attention to society’s physical and social barriers by tying oppression to the term disablement.

I sincerely doubt that most people who use identity first language are doing so to constantly be saying “hey you are oppressing me” or “hey I’m oppressed” (even though those two statements are likely true). They do it for the same reasons I do. It is a way to reject the idea that disability is a dirty word and to say that disability can be a part of a person’s identity without sacrificing their humanity. It’s a pushback against the stigma associated with disability (for more see this piece by Emily Ladau).

I however, choose to use IFL to directly challenge the bigotry inherent in assuming that I must be separated from my body to be considered human. I most definitely don’t do it to pigeon hole my identity into one label. I am far to complicated for that, just like everyone else.

I continue to believe that people should have the right to self-label and I endeavor to respect people’s personal preferences because we have been labeled by others far to often and it is time for us to take over the conversation about our own lives. I will not however accept the idea that my choice in sentence structure means that I am limiting my identity.

Source: Just Because I Use Identity First Language Doesn’t Mean I Let Disability Define Me | crippledscholar

Person first language arose because disabled people were being referred to by demeaning and pejorative terms that had an identity first construction. In some communities, where a preferred identity first term hasn’t arisen, person first is still the preferred construction.

Autistic people, however, have repeatedly expressed a preference for identity first language. For some reason, nonautistic people who think they know better continue to ignore our (loudly and oft-stated) preference. To those people I say, “If you truly believe we’re people, first or otherwise, then listen to what we’re  saying and respect our preference.”

Autistic is not a dirty word. When you act like it is, you aren’t helping  autistic people. You’re contributing the very stigma that you pretend to abhor.

Source: The Logical Fallacy of Person First Language | Musings of an Aspie

Undoubtedly, scholarly writers’ use of person-first language is well intended. Perhaps, scholarly writers’differential application of person-first language to children with disabilities (and most frequent application to children with the most stigmatized disabilities) is also well intended (e.g. to effect positive social change, beginning with the individuals who are most stigmatized, or to protect specifically individuals who are the most stigmatized). However, the core principle of person-first language mandates that persons with disabilities be treated, linguistically, the same way as persons without disabilities. Therefore, rather than avoiding linguistic ‘bias against persons or groups’ on the basis of disability, as the American Medical Association directs scholarly authors to do (2007, p. 412), scholarly authors may actually be imparting such bias. As numerous disability scholars have argued, person-first language ‘may have overcorrected to the point of further stigmatizing disability’ (Andrews et al., 2013, p.237). By ‘call[ing] attention to a person as having some type of “marred identity”’ (Vaughan, 2009), person-first language may do ‘the exact opposite of what it purports to do’ by signaling ‘shame instead of true equality’ (Jernigan, 2009); it may ‘reinforce the notion that it is “bad” to have a disability’ (La Forge,1991, p. 51)

What can authors, editors, professional organizations, and scholarly journals do to truly reduce linguistic bias? First, all parties can become better educated about the core principle motivating person-first language: Everyone is a person first, not just children with disabilities (and definitely not just children with developmental disabilities). As the American Speech Hearing-Language Association suggests, ‘do the same thing for both positive and negative attributes.’ Refer to all persons, both those with and without disabilities, with person-firstlanguage. Conversely, authors, editors, professional organizations, and scholarly journals could begin to embrace identity-first language, both for persons with and without disabilities. Some disability scholars encourage the use of identity-first language from a disability rights, equality, and diversity framework. In fact, identifying with a disability is empirically demonstrated to be associated with improved well-being, self-esteem, and quality of life for persons with a wide range of disabilities, which is why identify-first language for persons with disabilities is often preferred. At the least, scholarly writing should endeavor to not use linguistic constructions that accentuate rather than attenuate the stigma associated with disabilities.

Source: The use of person-first language in scholarly writing may accentuate stigma

See also,