Working Towards the Neutral Place

Something that I see coming up a lot in discussions about language is the argument that, by asking people to refrain from using words that refer to disability as pejoratives because they reinforce the idea that disability is categorically bad, people engaging in discussions about language are saying that disability is a bed of roses with a unicorn and a platter of cupcakes on the side. This is, as I said in a recent ‘Today in Journalism,’ so not true, and I wanted to pull that discussion out of that post, because it’s important, and it deserves its own post:

The thing about terms like ‘suffers from’ and ‘victim of’ is that if someone self identifies with them, that’s fine. But when they get used as generic terms to refer to people with disabilities in general, it sets a precedent. It tells people that disability is suffering, and that people with disabilities are victims. The reason that we ask people to use neutral language when talking about disability is not because we want to tell other people how to feel about their disabilities, but because we don’t want to tell nondisabled people to think negatively about disability.

This is an important thing, when talking about language. There’s a big difference between identifying with a term and using it, and using a term in general to refer to everyone like you, or, in the case of nondisabled people, using a term you’ve heard someone use as self identification to refer to everyone like that person. If the media presented disability in neutral terms, ‘The locals known Ray Magallan, a man with cerebral palsy who…,’ it allows readers to approach the article with neutrality. But here, from the very start, the subject of the article is a victim.

Asking people to think about the language they use generally is not about telling people that all disabilities are awesome! And terrific! And superfun! Nor is it about telling people how they should feel about their disabilities. What it’s about is working towards the neutral place: The place where disability in general is value neutral, rather than universally good or bad.

Speaking for myself and myself only, there are some things about my disabilities that I like, and that I am glad to have as part of my identity. There are other things about my disabilities that I dislike, and strongly wish would Go Away. And there are a lot of things that just are, that I don’t feel strongly about one way or the other. I don’t like society assigning values to my identities, or deciding that because I feel a particular way about a specific disability, all people who share that disability must feel like I do; I want society to view them neutrally, and that’s one of the reasons that I want to get people thinking about the language they use and how they use it.

The language isn’t the problem. It’s the underlying attitudes that are the problem. Disability is used as a shorthand for ‘bad’ because it is understood to be bad. The goal here is not to try and effect a switch, to disability as ‘good,’ but to get people to view it neutrally, and to allow individual people with disabled identities to shape their own approach to disability. To give people autonomy, and to make nondisabled people understand that when one person says ‘I hate my disabilities’ that person is speaking for ouself, just as the person who says ‘I love my disabilities’ is also speaking for ouself.

It’s also, of course, about getting people to confront the role of ableism in their lives, and to look at how it manifests, but that’s only one facet of conversations about language. People who are stuck on ‘oh, I need to just not use these words’ are missing the much larger discussion, that these words are code for attitudes and beliefs, and that when we talk about these words, we confront those beliefs. By working towards disability as neutral, we are allowing many people with disabilities self determination and autonomy, although not all people with disabilities will necessarily agree that working towards the neutral place is a shared goal, or even something that should happen at all.

Telling a person with disabilities who identifies ou personal experience as difficult, or painful, or unpleasant, or frustrating, or simply bad: ‘how can you say disability is bad!’ is every bit as policing as calling disability in general  a tragedy, because it’s denying someone’s lived experience, and it’s denying something that someone is articulating right in front of you. Someone who hates ou disabilities or who hates aspects of them isn’t ‘betraying the movement’ or ‘wrong,’ and the goal of language discussions isn’t to hound people who feel that way into changing their minds about how they feel about their bodies and brains.

It’s about creating a space for everyone, a space where people can self identify how they like, and feel the way they like, without being judged or shamed not just by society, but also by fellow people with disabilities. There is room for all identities and lines of thought in a world where disability is a neutral identity, and people are allowed to shape it and feel about it the way they want to, rather than being pressured to perform, think, and believe in a particular way for the benefit of others.

14 thoughts on “Working Towards the Neutral Place

  1. s.e., thank you so much for this. Many times over the past few months I’ve experienced inner conflict about this topic, thinking that I was a hypocrite for learning to embrace having AS but simultaneously almost always thinking that my OCD should just Die In A Fire, and that in order to be a “real” disability rights advocate I needed to embrace everything that my genes and life experience have dealt me. Thank you for expressing this, since it helps me get beyond my frequent black/white thinking (which is also a part of a disability that I have that I resent!) and realize that as long as everyone’s respectful, there’s room for the full spectrum of human experience in the disability community.

  2. I frequently, “I deal with bipolar,” or “I’m bipolar”–not my favorite, that’s more shorthand, used with medical professionals.

    I typically use the first to indicate that while bipolar is lousy, I manage. I see no upside of it, there is no positives for me, only negatives, and decent management (with risks and side effects).

    So how do I use my preferred language, without conveying to other people that that’s appropriate language–since it’s not “neutral.” It doesn’t feel right that I should have to educated them about others’ prefered language, but on the other hand, people do tend to use the language used by those they know.

    Anyway, right now this isn’t that relevent, since for professional reasons the number of people who know is very small, but someday I hope to be publically out.

  3. Thank you for this. I don’t identify as a PWD, but I did have severe clinical depression which stopped me from working for over 3 1/2 years. Since finding this blog I’ve been wondering if it was wrong for me to say that I suffered with depression (because that was how it felt to me), but I didn’t think it was an appropriate question for me to ask.

  4. Yes, yes, yes, this, a thousand times yes. Because here’s the thing–my feelings about generalized anxiety disorder change week to week, moment to moment. Sometimes I have it, and it’s just a part of me–I’m a worrier and a crier and the one who makes sure everyone has their seatbelt on, like, three times before I’ll back out of the driveway, and I’ll make fun of it and it’s all good. Sometimes I really, really struggle with it, I put off dealing with it and it gets too big and then it’s five times harder to deal with than it would have been. But I find the phrase “suffer from” highly distasteful in relation to myself, because it entirely eliminates the strength I’ve worked so hard to develop and the stubbornness that I inherited along with the GAD.

    Hopefully soon it will just be understood that PWDs are entitled to use the language they want to use when discussing their specific disabilities, and neutral language is what’s appropriate to use. When I out myself (which is, in all honesty, pretty often, although I’m not sure how I feel about that) I just tend to say “I have GAD” which I think is fairly neutral.

  5. hear hear! i prefer to say i am living with marfan syndrome. rarely am i suffering from marfan syndrome (though some days I am), and i’m sure as heck not a victim of it! hearing/seeing someone else add those latter two labels who is not-affected with the disorder drives me up the wall. but as you pointed out, i don’t care if someone with the disorder wants to use those terms. i just detest other people who have no idea what it’s like dictating how i and everyone else should feel about it.

  6. I so needed this post this week. My family have been proofreading my applications and have criticized my statement that I “enjoy” working with children with autism and their families because the families are devastated. They do not believe me when I explain that some are and many aren’t, and that the feelings of the family may or may not reflect the feelings of the actual person with autism. I don’t tell my patients or their families how to feel. And never mind my even trying to explain how I feel about my own disabilities (generally neutral, sometimes positive, occasionally negative) because I’m not supposed to think of myself as having disabilities which are such negative things. It’s just so wonderful and positive for me to take care of and help those other people over there, the ones with disabilities.

  7. This this this! Recently I’ve actually had several conversations with PWD/disabled people who felt as if they didn’t belong in the disability rights movement because they felt negatively about their disabilities and/or would cure them if they could. Which rather horrified me, because frankly if we’re making people feel that way we’re doing something wrong. And, you know, although I am usually quite happy to be autistic and have actually had a lot of difficulty with speech therapy precisely *because* I don’t mind my stutter and don’t want to lose it, there are aspects of my disabilities that can just go DIAF. (Executive function whyyyyyyyy.) I’m stuck with them so I do my best to live with them, but anyone who tells me I must! embrace! and be happy with! things like struggling desperately to do the work I have to do if I don’t want to fail my PhD – work which I enjoy doing if I can manage to force myself through the layers of problems I have getting started and focussing and keeping up attention and and and – is *not* practicing any brand of disability rights I want anything to do with.

  8. I wish we could reply directly to others’s comments! Nightengale, as the mother of a little boy on the autistic spectrum, I pray he finds therapists like you, people who ENJOY working with kids who have his particular disability. When you, the therapist, have a passion for the kids you’re working with and you truly understand their gifts and problem areas, you are helping to set them up for success. I am also not devastated by my son’s diagnosis. There are times it makes me very sad, it’s true, but he also has some gifts as a result of being on the spectrum that I wouldn’t trade away. I’d have to respectfully disagree with your family and suggest you keep the wording of enjoying your work. Your application is about how *you* view *your* work, not how every family of a person with autism might feel about their family member’s diagnosis (which could very well change day to day, anyway).

  9. This is an interesting article, because I *do* feel like I keep being told “You can’t say you suffer from, you can’t say it’s awful”. I’ve said I don’t know what I’ll do if my health issues get worse, because in my opinion, it’s not worth it. I’m not saying anyone else’s life isn’t worth it, I’m saying *mine*, I’m saying this is how I personally feel about my life.

    But it does seem like there’s a lot of policing around that, around the idea you’re not allowed to talk about yourself a certain way in case able-bodied people extrapolate it to “all people” – that I can’t honestly describe myself because of how other people might take it.

    It seems to me like a lack of shades of grey – people are latching onto “These are bad words, you can’t ever say them” instead of “These terms are hurtful if you’re using them to make assumptions about a group of people, but there’s nothing wrong with using them to describe yourself”.

  10. Thank You, I think it will be very useful 🙂
    I like this post, and neutral language is very important for me, I hate it when so many french, swiss and belgian journalists tend to use “souffre d’autisme” (suffer from autism) to refer to autistic people, (for me the truth is that I’ve never suffered from my autism, but I certainly have suffered from the experience to live in a world so full of the medical model of disability!)

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