The lecture I got made these points:
1) I needed to use person first language when referring to myself.
2) I needed to stop 'being down on myself.'
3) I needed to have a more positive view of myself.
4) How do I expect other people to treat me with respect when I don't respect myself.
Comically, I think it's funny to be lectured on how to be disabled and how to speak about myself as a disabled person by someone who does not have a disability.
Not funny was the implications of what she was saying.
In essence she was saying that what I am is automatically bad and has to be framed in a particular way and couched in particular obscuring language. It's like I'm supposed to assume that shame is attached to words because others have made that assumption.
Well.
I don't.
I am fat.
I am disabled.
I am those things, I have experiences as a result of those things. I want to bring those experiences to the table.
I begin to wonder if there is a need to silence the voices of those whose very acceptance of who they are threaten whole systems that are built up, not to eradicate shame but to embed it into how we understand and how we relate to disability and difference. To control how others speak of themselves is, kinda, the ultimate form of control.
At one point I was told that I was 'putting myself down' by using these words.
Really?
This tells me more about the woman I was speaking to than it does about me or my representation of myself.
She thinks that disability is a bad thing and to openly identify as a disabled person is to a 'put down' ... fat ... yep, a 'put down.'
Well, we've been 'kept down' but our being isn't the reason why.
I continue to be who I am, openly, and I continue to speak of and write of myself in whatever manner I chose.
My body.
My language.
I think it rather presumptuous for a person to tell another person what it is they 'need to' do. I find those words controlling, disempowering, and quite frankly - lazy. 'Need to' does not dialogue - it lectures. 'Need to' does not seek to explain - it directs. It assumes authority on the part of the speaker using those words.
ReplyDeleteThere is precious little I actually NEED to do - the rest is optional opportunity.
And to your comments on systems? I agree wholeheartedly. Were people truly empowered, there wouldn't be 'need' for such systems. But then system folks like things better when they have something purposeful and helpful to do . . . .
What did she say when you told her all that?
ReplyDeleteI hope her eyes were opened - it is tough educating people one at a time, but sometimes they have enough of an audience that it is worth the effort, for the public and the future.
You get to choose if it's worth it for your relationship with this woman, but it scares me that you two were 'professionals in the disability sector of service provision.'
I don't think she gets it.
Or maybe she just forgot who she was speaking to? And is a good service provider for HER clients?
It always boggles me that some people seem to think that they have a right to dictate how other people should self identify. I mean, what's more intimate and personal than PERSONAL SELF IDENTIFICATION?
ReplyDeleteI get that sometimes it's hard. I don't love the term "hearing impaired"--and among a great many deaf and hard of hearing people, I have tons of good company. But there are ALSO some people (no idea how many, but a substantive number) who do genuinely feel most comfortable referring to themselves, and having others refer to them, as "hearing impaired" (or "person with hearing impairment" or whatever variant they prefer). They may have grown up with that term, or they may feel uncomfortable claiming the term "deaf" or "hard of hearing" because ... whatever their reason(s) are. I still don't really like the term "hearing impaired" when used to refer to me, Andrea Shettle, the individual. But if some person who isn't me prefers that term for themself, then it's not my place to tell them that they shouldn't. Because it's not my identity that's being defined!
If I learn that they have adopted a label out of a mistaken idea about what the different terms mean, then I might clarify the meaning of each terminology for their awareness. For example, some people seem to have the idea that "hearing impaired" necessarily implies a more mild hearing loss. I'm not sure how that idea got out there, but, No, that's not correct. If a person is going to use the term "hearing impaired", then it's actually meant to refer to the ENTIRE SPECTRUM of hearing loss, anything from very mildly hard of hearing to complete inability to hear. It's an umbrella term. There is also a lot of confusion about the term "deaf" where many people mistakenly think it necessarily implies the complete absence of ability to hear. Again, not correct, it refers to anyone who cannot hear well enough/clearly enough to carry on a conversation on the phone. The word "deaf" most definitely can include people who can hear many things as long as they have difficulty talking on the phone. In other words, many of us deaf people can hear! Only some cannot.
But even then I still refrain from telling them how to personally identify. Because it's THEIR personal self identification, not mine.
There's a marked movement away from person-first language among self-advocates at the moment (particularly in the autism community). This is only based on my observations, but it seems to be agency staff that are fighting that move and still *insisting* on person-first language, instead of respecting the person's wishes regarding how they wish to self-identify.
ReplyDeleteI prefer to call myself disabled. I respect what other people prefer. It seems fairly simple to me, but I know from conversations that people often don't see it that way. I actually keep a go-to list of links to articles for Internet discussions for when people challenge me when I say, "Some people don't really feel that person-first works for them and would actually prefer identity-first language."
There are too many issues that need our energy, that we can afford to spend it policing each other on this...
Was this person mistaking herself with someone whose opinion you value or respect??? Wow - presumptuous!
ReplyDeleteDave,
ReplyDeleteit is hard as a teacher or paedagogue not to critisize sentence like the one you used; but for a complete different reason: we teach children (and if possible adults too) not to use common predjudices. Like talking to your cihilc because it hit you and saying you are a bad child. This is not a good way to teach children a kind of respect for themselves and others. You would rather say: I dont think it was good from you to hit. Rigjt now I am angry with you (implicating: but I still love you).
These sort of "I-messeges" are ingrained in us very early in our learning process at university.
Maybe thats what she wanted to tell you. Yes, you might be fat and disabled but I dont like to hear you talk this way about you (it sounds a bit degrading..,)
Julia
But, Julia, Dave does not consider fat and disabled to be degrading terms - simply facts. He is both. I have seen pictures and video of him and agree. He is a totally awesome person, and his weight and disability are parts of him.
ReplyDeleteI have never liked person-first language. The problem is not the language, it is the prejudice and stigma behind it. And I don't need anybody telling me I'm a person. If you don't see that without having to patronizingly tell me, then guess what? You are the one with the problem, not me.
You can change the language you use all you want but until the stigma and prejudice itself is dealt with there is no real change.
First, I think it was totally wrong of her to tell you what you should or shouldn't say about yourself. The flaw in her thinking is that she knows the best way to fight ableism and fatphobia--better than a disabled and fat person. And she also moved the conversation away from you, when you were about to make a point that would probably have more weight than whatever she was saying since you have firsthand experience. Totally not cool.
ReplyDeleteMaybe similar to Julia, I think what's interesting is that you and the woman are coming from a reasonable similar place: wanting to reduce the stigma around disability. I'm guessing that she sees using "people first" language as a way to live in the world as we want to see it. She's working from the assumption that there is a stigma attached to "fat" and "disabled." And in her mind, changing our language will reduce that stigma. And in some cases I think language changes are helpful--talking about the working poor, enslaved people instead of slaves, maybe the shift in language for black people. Whereas you take the view (that I also tend to agree with) that reclaiming words and using words as a fact or with pride removes/reduces the stigma. I'm curious if one took a study of preferences for "people first" language vs. reclaimed words (disabled, crip, etc) how many disabled people would want the "people first" language compared with able-bodied people? What about words that are actively slurs "dyke," "faggot," or words like "Indian" that are just wrong?
Thanks for baring through my thought ramblings, I realize I mostly paraphrased what you said, but it helped me think through it.... The bigger point being that one should never silence a marginalized person from using their experience to talk about an issue and it's particularly ironic when someone does this to advance a socially minded vision.
Always in admiration of your patience for educating people and of how much education you do everyday.
But WHY are "fat" or "disabled" considered degrading terms? That is the whole issue.
ReplyDeleteIf Dave said he had the "speaking point of view of a tall, grey haired man" no one would be talking about person first language.
Sharon
(a tall, grey haired, fat, disabled woman)
Oh, golly! And you didn't even mention that other big one - gay.
ReplyDeleteYou are right again, Dave. I'm not surprised. You are usually bang on the money.
To be told who you are is to be abused.
You are the one who decides who you are.
I am the person who decides who I am.
Julia -
ReplyDeleteI don't think that's such a good idea with actual children either.
When I was a kid, the only word I knew for my disability was "weird", and I wasn't allowed to say it.
That didn't make me feel better. It made me feel like it was all unspeakable.
I think if we demand that people change their self-talk as a precondition of listening to them, it tends to result in them feeling ignored a lot more often than it results in them feeling empowered.
And in any case — Dave isn't a child. He's an adult who understands what he's saying and who deserves respect as someone who has been thinking about these things for a long time and describes himself as he does for reasons.
Meaning well is not a substitute for listening or for respect.
Maybe it is, because my mother is a teacher. And she teaches children at the age of five and six. But she teaches not only math or biology or the basic letters and writing but most of all she educates children in social skills, interaction and respect.
ReplyDeleteIf words like fat or disabled are just used descriptiv it is totally okay. But most of the time there s a negativ afterthought attached and that is what I think Iat least should avoid.
Maybe it is, because as a child it was often assumed that my disability was contagious. Which scared other children, hurt me a lot and made me very insecure.
Which I do not know whether it applies for Dave too or not.
In no way I wanted to state something not nice to or about Dave. But I wanted to tell why maybe the woman said what she said.
Julia
Sharon said above
ReplyDelete"But WHY are "fat" or "disabled" considered degrading terms? That is the whole issue.
If Dave said he had the "speaking point of view of a tall, grey haired man" no one would be talking about person first language.
Sharon
(a tall, grey haired, fat, disabled woman)"
and that is the thing. IF a thing or a word or a person is seen as normal then it's ok, as in tall grey haired man. And if they build steps because it is normal then that's ok too.
The non-disabled in the world have decided what is normal and stigma is placed on the rest. And shut out, shut in or shut up!
Excellent post thanks Dave.
cheers
Gleecrip :)
"I'm curious if one took a study of preferences for "people first" language vs. reclaimed words (disabled, crip, etc) how many disabled people would want the "people first" language compared with able-bodied people?"
ReplyDeleteI wasn't able to find any research on disabled people in general, but I did find this study on preferred terminology for autism:
http://aut.sagepub.com/content/early/2015/06/10/1362361315588200.full.pdf+html
Autistic people tended to like 'is autistic', 'aspie' and 'on the autism spectrum' to describe themselves, while very few endorsed 'has autism' or 'person with autism'. So autistic people don't generally like person-first language.
One thing I find ridiculous, by the way? I've heard people use acronyms like PWA for 'person with autism'. Which really defeats the point, in my opinion, because the acronym is then used as a noun for a type of person, just as if they'd been calling them 'autistics'.