Research Opportunity

[FMA_Reece]

Language changes over time and is important to allow communication to be effective. Our community is full of fibro warriors, sufferers, and patients. Along with people with fibro these terms can describe those affected by our shared condition. Some people will use any of these terms, while others feel uncomfortable with being called a suffer or have another term they prefer.

Aedan, from the University of Washington is looking at disability language in his survey and would like your help.

"My research group is working on a research project that attempts to gather evidence on the preference between identity-first and person-first language by and for people with disabilities. As part of this project, we're conducting an anonymous survey (bit.ly/disability-language-... that should take about 5 minutes to fill out. We would like to invite all individuals with disabilities 18 years or older to take part in the survey. There are no other eligibility criteria. We'd be grateful to anyone who takes part in the survey. Individuals can feel free to broadly share it with others.

[Dinkie]

Completed and shared.

[Braveheart1]

Completed

[Cat00]

I tried to fill it out but I still don't know what the difference between the two terms is?

[desquinn Partner Volunteer FMAUK Trustee in reply to Cat00]

"Person-first language is language that puts a person before their diagnosis, such as being a person with a disability. Identity-first language is language that leads with a person's diagnosis, such as being a disabled person."

I put this reply on our FB post about this that may help with some of the conversations around this.

"- it seems like a simplistic conversation or topic but we have spent hours in the past talking about what to call our "clients, customers, enquirers, patients" etc.... or how to describe people in our content as warriors, sufferers or some other term.

And then there is what you may say personally or as an organisation and it is not that simple and it is a conversation that evolves and is happening all the time.

People with fibro is common or those affected by fibro but I would also call myself a fibro sufferer as a personal choice but do not like warrior generally as that implies like in the cancer discussion that you "lost the battle" as you did not fight hard enough which does not sit right.

Interested in what others feel."

Its quite important in the ASD community where neurotypical and neurodivergent are becoming the common terms. And its important as a first impression is important as we all know but a health professional for example using language the "sufferer" does not like damages that consultation before it starts.

hope that helps.

[Cat00 in reply to desquinn]

Thank you Des, that's incredibly helpful!

[Carlt in reply to desquinn]

I hate the term "fibrowarrior" because it implies some sort of gang or club mentality which I just don't possess.

I'm also not fighting anything...I'm learning to accept it as a permanent part of my life.

I rarely talk about the fibromyalgia because of the blank looks and, even though fibro is the thing that intrudes most in my life, it is easier to use my heart condition as a reason to duck out of activities because that is more "real" to non-sufferers.

Your ASD comparison is interesting because my 20 year old son, who is on the spectrum, only uses the term "autism" when it is beneficial with regards to support at University.

He prefers the term "geek".

He is doing a Physics degree and claims to be "far more normal" than any of his nerdy mates.

He has also said that his condition enables him to ignore the tedious things in life and get on with the important stuff...

...a bit like me and fibromyalgia.

[Midori]

Hmmm, With Google grabbing all one's information, I'm not keen on completing this as it wants you to log into Google first.

Sorry, Not happening.

Cheers, Midori

[desquinn Partner Volunteer FMAUK Trustee in reply to Midori]

No one is forcing you to complete it but with any data collection type activity it is worthwhile reading the info.

In this case you only need to log into google is you would like the form to save your process. So if you do it all in one sitting there is no need. It also states that your info is not shared with the researcher.

i.e. "Sign in to Google to save your progress. Learn more"

[Midori in reply to desquinn]

OK, Thanks Des!

Cheers, Midori