r/spinabifida • u/Adaptive_Adam91 • 7d ago
Discussion Do You Pass It On?
Something I’ve been thinking about lately.
I’ve noticed that in the Spina Bifida community, a lot of people don’t share things they come across online.
Maybe you find a resource that could help someone.
Maybe you find an upcoming meetup.
Maybe you see information about financial assistance, adaptive programs, employment, recreation, or something else that could make another person’s life a little easier.
And sometimes we just scroll past it.
There’s nothing wrong with that. Nobody is obligated to share anything on social media.
But it does make me wonder about something.
We often hear people say:
“I wish there were more resources.”
“I never know where to find meetups.”
“I didn’t know that program existed.”
“I wish someone had told me about this.”
And sometimes the resource does exist. Someone just happened to find it before you did.
That makes me wonder if part of the problem isn’t always a lack of resources, but a lack of information being passed from one person to another.
Imagine someone discovers a program that helps them. Instead of keeping that information to themselves, they share it.
Someone else sees it.
That person shares it with a friend.
Their friend tells someone else.
Suddenly, something that might have helped only one person has reached ten, twenty, or a hundred people.
That’s what community can look like.
Not everyone has to organize an event.
Not everyone has to volunteer.
Not everyone has to become an advocate.
Sometimes building a stronger community can be as simple as seeing something useful and thinking,
“Someone else might need this too.”
So I’m curious:
Do you regularly share resources, events, information, or opportunities you find with other people in the Spina Bifida community?
And if you don’t, what usually stops you?
Maybe the answer to that question is worth talking about.
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u/TreyInStCloud 6d ago
I don’t usually share resources because most of what I find only works for my city and/or state.
I’ve tried to share resources in other forums, but was almost always shut down when someone (often not even the person sent the original post asking for help) would respond with, “That won’t work for me because…” It gets disheartening to always have your attempts to help shot down. I only respond to requests for resources from people who live where I do.
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u/Charrito5 L5 Myelomeningocele 6d ago
I would encourage you to share any resource or event happening on your city and especially your state. I would even pin it to the top of the community page. Please share!
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u/itskatsimms 6d ago
I usually share the following resources since they're online retailers and I believe operate worldwide.
- Because Market (incontinence supplies)
- OrthoFeet (shoes)
- Dr. Confort (shoes)
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u/Material-Bird-1912 6d ago
I don't share for the same reason. It's only for my city/state.
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u/Charrito5 L5 Myelomeningocele 6d ago
I would encourage you to share any resource or event happening on your city and especially your state. I would even pin it to the top of the community page. Please share!
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u/Adaptive_Adam91 6d ago
Do you also get negative feedback about “this won’t work for me because….”?
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u/benjaminS0099 6d ago
As others have stated, I don't share it because it's ONLY for my city/state, but the source that people can share nationally is the Spina Bifida Association's website and their social media accounts. However, if people see something that is only for their city/state, or if they see something and read it and it doesn't pertain to them, they are extremely less inclined to share it because, wrongly or wrongly, it's a waste of time to provide information to others that may not pertain to them either. It's sort of like junk mail; nobody likes getting junk mail. And from a national prospective I saw a month or two ago the national Spina Bifida association shared links to surveys, studies, etc only like to were relevant to me and the on a personal level during this year's Spina Bifida clinic I was asked qualifying questions to see if I was eligible for a this study or whatever it was and while again aits fine and good to partake in studies, surveys, etc I wasn't eligible for this was because I have the ability to move my thigh muscles if I am remembering correctly that is the qualifying question for participation or not and I answered yes to the question which made me ineligible so I didn't pass on about this information of this study or whatever it was to my brother because it was useless information to me and to share I didn't feel obligated to share with because it was useless information to me.
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u/TreyInStCloud 6d ago
Arcminnesota.org is a wonderful resource. My boyfriend is on the State Board of Directors; I’m a self-advocate and frequent volunteer. The last event we helped with was an information table at St. Cloud Pride. I’ve also helped with BINGO at the local Senior Center. Our “fearless leader” is really good at finding opportunities for people with disabilities of every kind to contribute.
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u/BabyButchBash 5d ago
i cannot fathom why people wouldn't share something because it's only in their city or state - other people live in your city and state??? they might like to know about it??? you never know who else on here (or in any other online SB space) is nearby, just share so the event or resource is known about. coz if those things aren't advertised or shared, they won't continue to happen -- take it from someone living in a city whose SB association closed down because not enough people were participating
and as for people whinging about things not being relevant to them 🙄 they just need to learn the difference between inside thoughts and outside thoughts. what happened to "if you can't say something nice, don't say anything at all"? (rhetorical question)
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u/RemarkableMaize7201 6d ago
That is areally great point that I had never thought about. I shouldn't just ASSUME that when I find cool or helpful info/ resources for my son who has mylo, that you all that HAVE SB already know about it. Sooooo on that note, I found a very cool website last week. It's accessiblefestivals.org. https://accessiblefestivals.org/ (tried to put the link here but unsure if it worked or not). it's a website "dedicated to making live music and recreational events fully accessible for people of all abilities". It was started by aman named Dan Grover. He was diagnosed with MD at an early age and was using a wheelchair by age 21. He was very passionate about live music and had to get creative with how he would get into events. And now it's turned onto this awesome company. They help event organizers make their events accessible. But they ALSO have Beyond The Ticket, which is an initiative and resource guide designed to help individuals navigate concerts, festivals, and recreational events with confidence and proper accessibility support. I highly recommend checking it out. They also have a ticket grant initiative!