NOTE: I get that this topic may ruffle a lot of feathers. But before you judge the post before reading it, please be aware that this post is in no way advocating for outdated terminology or otherwise abusive or inappropriate use of words. I am merely interested in a discussion with other well meaning individuals who are only looking to be supportive of fellow members of the disabled community and their friends and family.
Let me just start off by saying I am disabled. I am disabled not in a way that you would be able to spot when I am doing my shopping or if you catch me in a conversation, and maybe not in a way you would see if we became friends. I am open about my disability (lupus SLE) and what living with it means, but it probably isn't the first thing I'll tell you about myself--it is just one of many things that make up who I am. That being said, there are very few words about disability, when applied to me, that I would take offense to. Perhaps if someone referred to me as "weak" or "lazy" (implying that the condition is my fault), I wouldn't be too pleased. Otherwise, if someone refers to me as "disabled," "lupie" (adjective lupus patients have come up with to describe themselves), "a lupus sufferer," etc., I find it hard to object to any of it. I also don't object to the notion that I do not live a normal life. My life is NOT the same as a normal, healthy woman my age. And that is okay, but it is a fact. I am not "normal" (whatever that even means!).
I recently came across a situation in which a woman was being bullied (via the Internet) for either a learning disability or being on the spectrum. I don't want to go into detail for fear of the person being identified, but people often refer to her in a very derogatory manner for not holding a job or for being an adult who lives with her parents. This infuriated me as it was obvious to me that the reason for her not living independently has less to do with a motivation problem and a lot more to do with another issue (can I say that? I can't even keep up!) that has not been disclosed (and doesn't have to be, as it is not our business).
I posted on a message board about this situation and how much it upset me. Although no one should be bullied, I find it most unfair for people to be bullied over something they can't help, such as a disability.
However, instead of people coming together to discuss ways to stop it or to express their frustration with the situation, I was met with a couple of people that were infuriated by the way I worded my post. One person was upset that I even inferred that this person may have a learning disability without knowing their situation and another was upset that I said she was not leading a "normal" life (the word "normal" is "highly offensive"). Apparently, the word "normal" is extremely offensive. I was also asked to refer to her as "unique" and was told I should say she is simply being bullied because she is "unique," like everyone else.
As a disabled person myself, this really frustrates me because a lot of these semantics almost seem patronizing. It is as if people are going out of their way to pretend the disability does not exist or to tell us we're just all "unique." In this way, I almost feel it brings even more negative attention to the disability, or is like giving us disabled folks a pat on the head to tell us "we're just okay as we are."
Secondly, I feel as though fighting over semantics (such as referring to a child as a child with autism as opposed to autistic, which I find confusing because many parents, including some I am related to, who are parents to children with autism refer to their child as both ways) takes the spotlight off of the real issues at hand. You can state your preference, especially when dealing with your own children, when it comes to semantics, but right-fighting and arguing over them over and over makes the person who is simply well meaning feel as though they shouldn't have even tried--or that they have gravely offended someone when all they did was speak in the vocabulary they know. It also, I think, makes the corrector feel a bit superior and makes the correctee feel very on edge and defensive.
Of course, as I stated in my warning, I am not referring to outdated terms or those that are universally offensive, but rather words that are different for different people. For example, some parents of children with learning disabilities I know are okay using the word "normal" or saying that their child is autistic, whilst others will say very angrily that these words are terribly offensive. Because there is no set guideline for things like this, it turns into making an issue over something that takes away from the actual issue at hand.
On the same token, I cringe when I hear words like "differently abled." We are all "differently abled" in that we are all good at some things and not so good at others, and those differ widely from person to person. But because I have bouts of arthritis that make it very hard for me to walk at times (and have since I was in my early 20s) doesn't make me "differently abled," but DISabled in comparison to my normal peers who do not have intermittent episodes of finding walking a challenge. Again, I find the "differently abled" language to be overly-cutesy, alienating and downright cringe-worthy.
Before I wrote this, I felt horrible that I may have offended someone. But then I read blog after blog after blog about people who have disabilities other than my own, and there seems to be a divide on semantics....but overall no real set guidelines or "acceptable terminology", other than that some people take it upon themselves to set you right and argue semantics no matter what.
Semantics can be important, but when they become overly divisive, confusing and take the focus off of real issues, you have to ask yourself whether or not it is worth correcting strangers who have well meaning intentions. I would have no problem with someone asking me to personally refer to their child or relative or themselves in a certain way, but I will not call all disabled people or people who process things differently than most people simply "unique." This, in itself, is something I find severely patronizing.
The author of the blog Lost and Tired: Confessions of an Autism Dad had this to say on the subject:
"Why are some people so sensitive to the word Autistic when I’ve spoken to many adults on the Spectrum who actually prefer the word Autistic and don’t find it offensive in the least [sic].
I think it’s important to remember that whether you use the word Autistic or with Autism, it doesn’t change the reality of the situation.
To be completely honest, when you put so much negative weight on a single word like, Autistic, you can give the impression that there is something wrong with being Autistic as it means the same as with Autism."
The author of the blog Autism and Oughtisms had this to say in a blog post (which you should read the whole thing as she is much more insightful than I am!):
"However, I’ve often seen these “language corrections” been used to shut down discussion, and to exclude people from taking part in discussions. Such language corrections also often come hand-in-hand with condescending and judgmental attitudes, that also serve to make the person being corrected feel belittled and shamed, regardless of the message or experience they were attempting to share.....
Many people who are new to autism rhetoric, can be overwhelmed by these endless corrections. I’ve read comments and posts by some who were scared away from either writing about or commenting on autism, because nothing they ever said was “right;” no matter how kind, correct or insightful their actual writing is."
In the end, the woman is still being bullied and no solutions were proposed on how to stop it. But at least I know a couple of people's opinions on what is and isn't extremely offensive.
To me, these semantics also affect discussions of genocide, genocide education and other similar topics when we are out educating the public....but that is a whole other topic!
I hope I am expressing myself clearly and you all don't think I am this horrible monster. Underneath anything, all people just want to be loved and acknowledged and to feel special. And that's all I want for anyone else--and for us all, in turn, to do the same for each other.
(That I'm scared to write this should make me think, but:) I am disabled as well. Not in a physical, but mental way. I find it very difficult to tell people which words offend me and which don't, because it really depends on the context it comes in. I am sick, I am unable to do things the majority of people can. And I am sick of people telling me I'm just "sensitive" and have "special needs". Uhm, nope., I am sick. Period. I do however have a problem with people saying "You are sick" in an insulting way. I dislike it when people say things like "You know, it's not really a disease" or "Can't you just work a little harder on yourself?" Ugh. Well, what I am trying to say is: I think what wording is offensive or not depends on the person and the context a lot, but I am quite annoyed with people being over cautios of using words like sick and the name of the actual disease. Thank you for the courage to put up such an entry! ♥
ReplyDeleteletscoba.blogspot.com
I fully agree with all of this! Sorry I'm not more eloquent, but I 100% agree with this! xx
DeleteI feel like political correctness in general has gotten way out of hand. Of course there are some thing you shouldn't say about certain groups of people, whether that have to do with race, religion, disability, etc., but those things have more to do with intended offense rather than just describing the person/group. For example, using the "N" word is horribly offensive and it's meant to hurt. It goes beyond any issue of being politically correct, IMO, when you're trying to hurt someone or be rude. With that being said, I do think there are things that could hurt someone personally, as in, that person specifically is offended, not the whole group. In that type of situation I would refrain from using a certain term around them. For example, you use the word "lupie" and you don't seem to consider that offensive. It's highly probably though that there are a few people who have lupus and hate being described that way. While I might not stop using that term all together, I would certainly not use it around them. I also think it's possible to be unintentionally hurtful, although I feel like that probably doesn't happen too often. I live by the rule of intent. Did that person intend to be rude? Did they intend to hurt me/others? If they answer is no, then I mostly let it go. Unless it's terribly over the top I won't even say anything because I just don't see it as necessary. Occasionally I might gently tell someone I'm sure they didn't intend to be hurtful/rude/offensive, but that's how it came across. If they are decent people they will usually apologize and move on. I also try to refer to people the way they like. If someone didn't like to be called autistic but preferred another term I would use that term instead. I also agree with Coba that context is everything, so is tone.
ReplyDeleteI feel like my comment might have been a little all over, but I really enjoyed your post and wanted to leave my thoughts. :)
No I totally agree. I think people 100% have the right to decide how they want to be referred, but it is less likely that someone wants to be referred to as a cute-sy term like "unique." But again, of course I would defer to the person but you know what I mean. :) Thanks for your response. I appreciate it a lot! xx
DeleteThis is a great post and it's something I come across a lot in my day to day life as a medical student - how do we refer to people with disabilities or illnesses? In my opinion, we should focus less on what the 'correct' term happens to be this week, and more on simply being open minded, respectful and understanding. We've also had lots of teaching on these things, including talks from people with disabilities and it's useful to hear what they have to say. A lot of it seems to simply come down to personal preferences. Using words like 'unique' or 'differently abled' just feel a bit clumsy to me and most of the disabled people I meet care more about society being accommodating to them (i.e. making places accessible, making it easy for those who are hearing or sight impaired to lead 'normal' lives) than what specific words are used.
ReplyDeleteIt's a tricky subject and probably one that we'll never manage to have everyone in agreement over, but personally I feel it's more about attitudes and less about semantics.
Jennifer x
Ginevrella | Lifestyle Blog
I definitely agree....and it makes it worse that these terms are constantly changing. Sometimes I feel like it takes the focus off of the real issues and on the people who want to be made to feel comfortable. I know this sounds awful, but in a way it is selfish if you're actually trying to discuss an issue and someone (who isn't disabled) tries to right fight over it to make themselves feel better. It is annoying, in my opinion and makes things worse and much more uncomfortable. xx
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