Last week’s diary attracted a type of commenter attention that motivates us to expand on what we mean by Our only rule is to be kind. Thus, I present this Kindness Manifesto describing KosAbility’s overarching policy on participation. Our only rule requires elaboration as apparently “kindness” is a concept misunderstood by a small but pugnacious subset of DK members. Also, I am spurred personally to define boundaries for a specific type of ableist behavior, although the triggering situation wasn’t onerous. Since I’m using my Authoritative Voice, I may as well cover both topics.
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First, a reminder that our monthly meeting is next Sunday, 28 October at 4pm PT.
The topic is caring for our eyes.
join us to share stories about your cataract surgery, vision health, or whatever is on your mind.
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kosability’s main rule specifies kindness
Being kind is similar to saying don’t be a jerk but adds courtesy and compassion. For those needing more help in understanding, here are some synonyms for kind: benevolent, goodhearted, tenderhearted, compassionate, warmhearted.
GET IT? KINDNESS IS HEART-CENTERED.
We add this extra layer of heart-centeredness because KosAbility meetings are intended to be a safe place for people to share their thoughts and ask questions. We don’t condone dangerous suggestions (“Try IV Clorox.”) or conspiracy theories like anti-vax, but short of such extremes, we won’t police someone’s personal thoughts as long as that member is otherwise following our be kind rule. Our philosophy is to accept what people express about their personal situation whether we agree or not. Your personal experience is valid for you even if someone else has a similar experience and sees it differently.
When we disagree about impersonal facts, we still expect kindness to accompany knowledge. We ask you not to perseverate in your opinion, and, in certain situations, support your facts with citations.
Perseveration: continuation of something . . . to an exceptional degree or beyond a desired point
- Do express your opposition in a friendly, respectful manner and back it up with citations when you are arguing against (denying the validity of) someone else’s well-cited impersonal information.
- Don’t go on and on hammering out your opinion in an attempt to vanquish opposition. No bullying.
We want to maintain a non-judgmental and supportive environment, and not give dogmatic advice. Outside of basic factual information and personal stories, please frame your advice to others as a personal experience or idea, not a decree. For example — "If it were me, I'd take magnesium as it helps my muscle cramps.” Another example — “I’ve found that not eating [x/y/z] food reduces my pain levels.”
- Not all the treatments benefiting us have robust supportive research and that’s okay. Avoid commenting if all you bring is a sneer about the absence of double blind studies of the type required for prescription drug approval. These typically cost millions of dollars and are conducted in pursuit of profit.
- We have the right to use nonprescription treatments and modalities without the approval of bystanders.
- Some treatments vary dramatically depending on the individual and aren’t amenable to general research.
- For those of us with poorly-understood health issues, the standard of care often is inadequate or even counterproductive (e.g., psychogenic diagnoses). We have the right to look to non-standard of care treatments for help.
- This doesn’t mean we are silent when a dangerous idea or expensive scam is proposed. For example, there are stem cell clinics that charge $25K or so for treatment, without any evidence of efficacy.
- If you wish to contest information, be kind when you offer opposition and be willing to let it go. Don’t perseverate.
Anyone is welcome to show up and participate in KosAbility as long as they adhere to our be kind policy. But we do not welcome people who drop by to dogmatically and rudely assert their authority only when their pet peeves are triggered. Such interlopers should be flagged into oblivion for any violation of site rules. They will be asked to leave.
We Admins are developing a standardized “not appropriate here” comment notice for the dogmatic visitor who hammers authoritatively in violation of our Be Kind rule. When you see such a notice, please do not argue with these commenters because they don’t seek a discussion — they are trying to intimate and dominate. While we cannot block these people, we can ignore them. And we can flag into hiding comments that violate the Daily Kos Rules of the Road like Don’t be a jerk. Be sure to read the section on flagging to learn what is acceptable and what to avoid. Remember, if you wrote the diary or are actively engaged in discussion with the violator, you cannot flag their comment.
setting boundaries
No one owes someone information about their personal health. We do not have to explain our diseases or disabilities to justify our medical care, or for any reason. Disabled people are not obligated to disclose personal details anymore than non-disabled people. We should not be expected to take on the emotional labor of convincing skeptics that our health problems are real. Don’t assume you know more about our health situations than we do and don’t criticize our medical care unless asked for your advice.
Most people with invisible disabilities encounter skepticism and ableist micro-aggressions. Because I have Lyme disease, Babesiosis, and chronic fatigue syndrome (CFS), this type of ableism has been especially prevalent. I’m not interested in whether you “believe” in these diseases or not. I’m not going to respond if you shove studies in my face to prove they don’t exist.
Educating healthy people about our disabilities/diseases is energy-intensive and we have no obligation to respond to critical questions unless we’ve specifically written an informative article or comment. If you have symptoms and sincerely are concerned about Lyme disease, I’m open to sharing information. But I don’t want to be cornered by someone trying to “prove” I can’t have the diseases my doctors and lab tests diagnosed.
If you want to argue the validity of the diseases that changed my life drastically and nearly killed me, I have one simple response: DON’T DO IT.
While I remain open to miracle cures, it’s unlikely I’ll suddenly revert to pre-tick-bite health because someone tells me chronic Lyme or CFS doesn’t exist. If the urge to “prove me wrong” comes over you, go away and ask yourself what you get out of telling me my diseases aren’t real. Then if you still wish to perseverate in your opinion, DON’T.
It is possible to be both knowledgeable and heart-centered.
Kosability is BY and FOR
- PEOPLE LIVING WITH DISABILITIEs;
- WHO LOVE SOMEONE WITH A DISABILITY; OR
- WHO WANT TO KNOW MORE ABOUT THE ISSUES.
OUR DISCUSSIONS ARE OPEN THREADS IN THE CONTEXT OF THIS COMMUNITY.
FEEL FREE TO
- COMMENT ON THE DIARY TOPIC;
- ASK QUESTIONS OF THE DIARIST OR GENERALLY TO EVERYONE;
- SHARE SOMETHING YOU'VE LEARNED; OR
- gripe ABOUT YOUR SITUATION.
OUR ONLY RULE IS TO BE KIND.
bullies WILL BE ignored and/or obliterated.
for more elaboration on our group rule please read this story.
IF YOU ARE INTERESTED IN CONTRIBUTING A DIARY CONTACT BESAME, CATHYM, WILDERNESS VOICE, OR STEVEN PARK.
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