Thanks to my ME and the brain fog and cognitive issues that come with it, I have a few issues with language that I never used to have. I forget words, muddle them up, say the wrong thing. I get a dyslexia like problem where words get jumbled up on the page and so I misread them, so my understanding of them isn’t great. It happens both with written and verbal communication, reading and writing, speaking and listening. Sometimes this is funny, sometimes it’s embarrassing, most of the time it’s frustrating.
Autism also brings its own language stuff to the table. I still take things literally when initially hearing them, though I can now “translate” most common figurative phrases into their actual meaning. I struggle to adapt what people have said to make it fit my personal situation (that caused more of a problem at college than it does now). Sarcasm is often a struggle- I sometimes understand it, and can even use it, but other times I take what is said seriously. As is often the case with autism, my ability to process language is variable day to day (or hour to hour). ME just makes things all the harder.
I love language. I like to play with it, changing words into forms that sound nice and feel nice to say, repeating words I like over and over (bananas!). Johan and I can judge each other’s moods based on how we’re using language. When I was younger I was called a walking dictionary due to my like of using new words I’d discovered that most people didn’t seem to understand and knowing the meanings of loads of unusual words, but now I stick with a vocabulary that is mostly understood by those who I want to communicate with.
How language is used interests me. As my main source of information at the moment is Twitter, I see most things in bite sized chunks (very good for a foggy brain). Some of what I see I agree with, some of it I don’t. I wanted to write a bit about it now. (I’m sorry if this isn’t very clear or coherent, I’m still waiting for a good day to happen and wanted to write it now.)
The main use of language is communication. For me, the meaning and intent of the communication is the most important thing, as although language can be beautiful in itself, it’s the communication that makes itself useful. I mostly don’t worry about the actual words used so long as the meaning gets across. There are exceptions to this. I don’t like the use of language that is used offensively to imply a group of people are inferior to others in some way (racists insults, the r-word, things like that). I do like people to determine their own language to describe themselves, even claiming back words that were previously used offensively (crip and mentalist are two that are used quite a bit by those I follow on Twitter). What I dislike most though is the use of language to exclude people.
There are a few areas where language is being discussed in the communities I’m part of. In the autism community, there’s the removal of the diagnosis of Asperger’s Syndrome from the DSM 5. I consider all those diagnosed with Asperger’s to be autistic (as it’s classified as an autism spectrum condition, and where the line is drawn between Asperger’s and autism seems to depend more on who diagnoses you than your actual pattern of skills and difficulties). There are some who disagree with this. I don’t like the term Aspie for myself, but don’t get upset when others use it. My personal preference is to be described as autistic- I believe that fits me best, as a distinction made based on my language abilities as a toddler doesn’t exactly have much bearing on my abilities as an adult. I get slightly irritated when someone describes me as having Asperger’s Syndrome (as that’s not how I describe myself) and quite a bit more irritated when someone describes Johan as having Asperger’s (as that’s not even his diagnosis) but I’m mostly irritated at those who think that having Asperger’s is better than having autism (or better than being neurotypical, or neurodivergent in other ways), as I believe that’s wrong (everyone is equal to me).
In the ME community, it’s the name itself that’s the main issue. There isn’t a universally agreed name for the illness, which sucks. My diagnosis was originally given as myalgic encephalomyelitis, but has also been described as chronic fatigue syndrome. In quite a lot of places the two terms are put together. Some doctors use myalgic encephalopathy. It has loads of other names too. Some people dislike it being called ME as it’s not obviously accurate. Quite a lot of people dislike the term chronic fatigue syndrome because it trivialises a serious debilitating illness and makes it sound not that bad. My view is I prefer ME as it is taken more seriously by doctors and is closer to describing the condition, but I really don’t have the energy to get into massive arguments about the name as I’m too busy trying to live with and try and get better from it. I meet pretty much every set of criteria for ME or CFS I’ve seen, and I know some of the issue is that some people are diagnosed with CFS who don’t have the same illness as those with ME (some of whom may have other, possibly more treatable conditions) and that’s been used to promote treatments that are harmful.
Although the name is important (as it does affect attitudes), some people seem to believe it’s the most important issue, and if you don’t agree with them you’re not good enough. I’ve seen comments along the lines of all those diagnosed with CFS aren’t as ill as those with ME (which one you get diagnosed with is more to do with who does the diagnosing) and that if you combine the two (as I do sometimes to be inclusive to those with either diagnosis) it’s the worst thing ever. It’s draining. I’m far more interested in effective treatments and a cure, as having a name that everyone agrees with, though good, wouldn’t do much to take away the pain, weakness, muscle spasms, jerkiness and other horrible symptoms I have. Using the name to exclude people from the community and possible sources of support is really sucky.
In the general disability community, there are other language discussions that come up. A big one is about person first language. That’s where you consciously say a person with <autism/deafness/etc.> rather than an <autistic/deaf/etc.> person. The claim is that it puts the person before the disability. I’ve mostly heard this from non-disabled people, but I’m sure there are disabled people (or people with disabilities) who believe this. For me, I believe this is very individual. I consider being autistic (and being disabled) part of my identity. I’ve always been autistic, and as it is a difference in my neurology it affects how I perceive the world. For this reason I normally call myself autistic, the same way I’d say I’m tall. I’m not strict with it though, and will sometimes say I have autism if it fits better with what I’m saying (just like I can say I’m blue-eyed or I have blue eyes, and both are accurate). I’ve been yelled at (by someone without a disability) for calling myself autistic before, and feel that was very much wrong as it’s my identity and they were trying to force their beliefs on me in an area which directly affects me.
I feel different regarding the ME. As it’s an illness that causes disability, rather than just a disability like autism is, I don’t see it as part of my identity. So I pretty much always say I have ME. Others will probably disagree and may see their illness as part of their identity, and that is their right and I will respect that, and will try to remember what language they prefer (and hopefully they’ll take my disability into account and be forgiving if I mess up sometimes). I know people who feel strongly both ways on person first language and other issues, but so long as everyone is respectful and agrees that what is right for an individual is determined by that individual, then all is good.
The biggest reason for wanting to write this blog post (though I’d been wanting to talk about all the above for a while) is because of some recent conversations I’ve been seeing on Twitter. Most of these are in more general equality communities (feminists and such) rather than specifically disability related, but disability politics and language is obviously involved in it. It’s regarding using language as a tool to exclude people from a community, and ultimately from equality.
The first way I’ve seen it happen is by using language that is offensive towards a group of people, while claiming to be for equality for all. I’m not going to go into any specific examples but feminists who use language that insults transpeople is an example. Now I believe that intention is a big part of communication, and this may occur accidentally. If it was unintentional, I believe the best thing to do (when it’s pointed out to you) is apologise, and try not to repeat the same mistake. Those you insulted may be angry, but I believe most people have good intentions and if you can do your best to learn from it, then it should calm down. Of course, this may also be done intentionally, because unfortunately some people don’t believe everyone is equal and some people believe that if you’re attacked the best thing to do is to attack others, in which case you’ll have a very angry group of people and hopefully the law can step in if it goes too far. I also believe you should challenge the opinion, not the person. Responding to hate with hate just makes more hate.
Now I’ll admit here that I don’t fully understand the concept of privilege as used by those in the feminist/equality community. I know that as a white, literate, disabled female in the UK I have privilege due to my skin colour, literacy, and living in a “developed” country with a welfare system, but men and those without disabilities have privilege above me cos I’m a disabled woman. I’m guessing it’s more complicated than that but I’ve yet to find an easy to understand explanation (I especially don’t understand how my privilege works regarding my sexuality, as I’m bisexual but most people assume I’m heterosexual).
That brings me on to the second way I’ve seen language used to exclude people. I’ve seen some people in the feminist/equality community use lots of jargon and terminology, and if you don’t understand it then you aren’t a proper feminist and you can’t be a good ally or whatever. That attitude excludes a lot of people. For me, it scares me from even getting involved in any conversations as I’m so terrified I might make a mistake and someone will get angry at me (and I’m not the only one who feels that way). It excludes those who for whatever reason don’t have the level of education needed to understand those terms. It excludes those with learning disabilities. There will be others as well. This is especially upsetting for me when it happens regarding disability issues as so many in the community have difficulty in using standard language to communicate to begin with. The insistence that everyone uses the same jargon (with the assumption that everyone has the ability to understand and use it) is very scary for someone with mild language and cognitive difficulties and anxiety. There are also those who play the “I have it worse than you” card, often without knowing the full situation of the other party, and believe they can never understand if they’ve not experienced the exact same difficulties. I believe that everyone is equal and want to help make the world safe and happy for everyone, no matter what differences or similarities they have, but I’m scared to do much as I’m afraid of being attacked by those who say they have the same aims as me.
I wish I knew a solution to this. There are things that could improve matters. Making information about feminism and other equality subjects more accessible for those with learning disabilities by using plain language and easy to read formats would help a little bit. Understanding and tolerance go a long way. Learning the best way to deal with bullies, fun suckers and trolls (who exist in every community, unfortunately) would help for some situations but I’m guessing that often depends on the situation.
On a personal level, I’m just going to do my best to treat everyone like a human being who deserves equality. I’ll make mistakes, but I hope to learn from them. Some of those lessons may be embarrassing and/or painful, but I hope in the long run they’ll make me a better person. No matter what, I have as much right to be here as any other person on this planet.