#MEAction - CDC revises its information on ME - by Jaime S

[Dolphin]

I wonder whether “wheelchair-dependent” is actually better here. It seems to suggest it is less of a choice, that someone needs it. With “wheelchair user”, it sounds the individual has simply chosen to use it.

People who use the term “wheelchair users” are overwhelmingly disabled people, including people who are visibly disabled. I think this association would help the point you’re trying to get to, not hurt it.

People who say “wheelchair-dependent” tend to be people who are chronically ill and new to the idea of being disabled (whether because new debily or because been focused on illness issues rather than access and device issues), or people who are not themselves disabled and don’t understand how a wheelchair could improve independence and mobility.

Alternatively, people who suggest "wheelchair user" is definitely correct and "wheelchair dependent" is definitely wrong in this context may be not (sufficiently) considering the context and the fact that some doctors have said (and a bigger group likely believe) people with ME/CFS don't need to use wheelchairs, they may use them but shouldn't be using them. The context here is that they are trying to say the illness can be very disabling and I think the prestigious CDC saying some patients can be "completely wheelchair dependent" seems to get across that some patients have severe disability at least as well if not better as saying some patients are "wheelchair users".

I don't see this as comparable to saying someone is dependent on glasses as there is not a strong perception in the medical profession, or more generally, that there are a large people wearing glasses who say they need glasses but really don't need them.

I also think it is often useful to pick your battles in life and don't see this wording is that badly flawed, compared to a lot of what is written about ME/CFS.

 

[WillowJ]

I also think it is often pick your battles in life and don't see this wording is that badly flawed, compared to a lot of what is written about ME/CFS.

It’s true that we probably do have bigger fish to fry.

(It’s a good idea to consider the bigger picture including people with other conditions when doing our stuff so it’s worthwhile to make sure we’re in line with the majority useage. But there’s likely higher impact stuff to work on with CDC on the ME pages.)

I did make sure in my initial post that it was clear I was citing CDC, but of course CDC wasn’t going to bring up wheelchairs unprompted, so it’s likely some advocate wrote that wording. Apologies if my strong negative description stepped on any toes. I will edit the strongest word out.

ETA: I checked with my sister and looked at the sentence again and I think there’s probably a way to stick with majority usage and keep the “need to use it all the time” idea. One could say something more like: “uses solely a wheelchair for mobility.”

Of course, for the less severe one might be able to stand, transfer, and walk a short bit and still require and be able to access a wheelchair, which is essential to have in the guidelines as well.

But important to note how severe people can get, as doctors don’t even tend to know the moderate issues, much less the severe and very severe.

 

[JaimeS]

Summing up this week, incorporating community feedback. Easier for me if you comment on the article itself -- if you can, pls & thank you. If you already have, bless you.