u/Adaptive_Adam91

My last post, I talked about sharing resources, information, and other things that could help the Spina Bifida community.
A few people mentioned that they don’t always share because sometimes an event or resource is specific to their city or state. Someone else said it simply never crossed their mind to share certain information because they assumed everyone already knew about it. Another person mentioned that they had tried sharing things in the past, only to have people quickly shut it down because it didn’t apply to them personally.
And honestly, hearing those responses made me think even more about how important sharing can be.
If something is happening in your city or state, share it. You never know who might be there, who might be planning to move there, or who might know someone who could benefit from it.
If you think everyone already knows about a resource, share it anyway. Maybe someone who is younger in our community has never heard of it. Maybe someone is newly diagnosed. Maybe a parent is desperately looking for exactly that information.
And if something doesn’t personally apply to you, that doesn’t mean it won’t matter to someone else.
So I want to encourage everyone to do something simple:
Comment below with something you know.
Maybe you know of a place that sells or modifies vehicles with hand controls. Maybe you know about an upcoming meetup. Maybe you know of an organization, program, scholarship, support group, adaptive activity, or resource that has helped you or someone you know.
Whatever it is, share it.
You never know who might see it.
Building a stronger Spina Bifida community doesn’t always require something huge. Sometimes it starts with something as simple as passing along what we know.
So let’s share what we know. You never know who might need it.

https://www.sacvans.com <—— vans that have hand controls

https://www.spinabifidaassociation.org/chapter/spina-bifida-association-of-california/ <—— contact info for the California chapter of the SBA

Yesterday’s discussion was great! I really enjoyed reading everyone’s feedback and hearing about the different things you are doing or working toward.
Hearing about the different challenges and obstacles many of you have overcome to get where you are is exactly the kind of conversation I believe this community needs more of. So, continuing that thought, I wanted to ask: What is something you are most proud of? For me personally, I came from a pretty dysfunctional family. My parents argued, my siblings and I were always fighting, and there wasn’t much stability growing up. That said, I am still appreciative of the things my parents taught me and the ways my siblings helped me throughout my life.
As I got older, I realized there were a lot of things I needed to work on for myself. Building stability, learning life skills, and becoming more independent didn’t happen overnight. Today, I have a full-time job working as an RBT, my own apartment, and the ability to manage my bills, health, cooking, cleaning, and grocery shopping. To some people, that might sound like an average life. And honestly, it is. But I’m proud of where I am because I know where I could have ended up if I hadn’t received the support I did from my family and put in the effort to become more independent. So what about you? What are you proud of? No matter how big or small it may seem, I would love for you to share. Your accomplishments don’t have to look impressive to someone else to be meaningful to you.

Edit: loving the answers here. This is what we need more of in our community. Please let us continue to have these type of discussions amongst others with SB. It is need so badly! I want younger ones and parents to see what is possible!

When you were a child, were you ever asked what you wanted to be when you grew up? For many children, this is a normal part of growing up. They are encouraged to imagine their future, explore different interests, and dream about the kind of life they might want someday. Maybe they wanted to become a doctor, an astronaut, a teacher, or a professional athlete. Maybe those dreams changed as they got older. That’s okay. The important thing was that they were encouraged to think about what was possible. But I wonder how often children with Spina Bifida were asked the same question. Not what doctors thought they would be capable of. Not what accommodations they might need. Not what their limitations would be. What do you want to do with your life? I bring this up because I think some adults with Spina Bifida are struggling with something deeper than simply not having a career or a plan. Some of us may have grown up without ever being encouraged to develop dreams and ambitions. Instead, our lives were often centered around what we couldn’t do, what might be dangerous, or what someone else needed to do for us. And when those limitations are established early enough, they can become difficult to recognize as limitations placed on us rather than limitations we chose for ourselves. So now we have adults who may feel lost, frustrated, or without direction. Not because they lack intelligence or ambition. But because nobody ever really asked them what they wanted. I also think it’s important to recognize that having dreams and ambitions doesn’t mean everyone needs to pursue a huge career, make a six-figure salary, or achieve something society considers impressive. Maybe your ambition is to become healthier. Maybe it’s to become more independent. Maybe you want to make friends, develop hobbies, travel, fall in love, learn how to cook, or simply wake up each morning feeling happy with the life you’ve built. Those things matter too. A fulfilling life doesn’t have to look impressive to everyone else. Sometimes ambition is simply wanting more for yourself than what you’ve been taught to expect. So I want to ask everyone here: Were you encouraged to think about your future growing up? Were you asked what you wanted to do, or were most conversations focused on what you couldn’t do? And if you weren’t encouraged to dream as a child, do you think that affected how you see your future today?

Have you heard of the Bean Soup Theory? It’s a theory about social media. The example it gives is someone posting a recipe for bean soup. Some people comment that they love it. Others say they can’t wait to try the recipe. But eventually, there is always that one person who comments: “I don’t like beans.” The overall point is that social media has become a place where people sometimes feel the need to announce what they don’t like, even when nobody asked them to. Now you may be wondering, why am I bringing this up? Because I have experienced this throughout all my years of posting in the Spina Bifida community. Almost everything I have posted has been met with some version of that response. I could share a meal I made and someone might say, “Not everyone with Spina Bifida can cook!”
I could post a picture with my friends and someone might respond, “Not everyone can make friends as easily as you!” I could share that I landed a job I really enjoy and someone might say, “I have to live off government assistance. This post is ableist!”
And, as many of you have probably seen, I have also received hateful comments from the same person over and over again. Along with the downvoting, it has sometimes resulted in my posts not being seen by the very people who might actually benefit from them.
Am I saying you have to like everything I post?
Absolutely not. We all have different opinions, experiences, abilities, and circumstances. What works for me might not work for you, and that’s okay.
But here’s what I don’t understand: Why ruin it for the people who can benefit from it? Why does someone else’s ability to do something have to take away from another person’s hope that they might be able to do it too? I believe this is something that has hurt our community over and over again. The people who complain, criticize, and focus on the negative can sometimes be much louder than those of us who want to share positive experiences, encourage others, and show what is possible. Maybe we need to give those voices more room. So let’s do our best to uplift one another. Share your accomplishments. Share your hobbies. Share the things that make you happy. Share the things that have helped you. And if you see something you don’t like? Even if it’s this post?
You don’t have to eat the soup. Just keep scrolling. There’s no need to be hateful.

Hi everyone! My name is Adam, and I’ve been attending SacAnime for the past few years. This past Saturday, I had the opportunity to co-host a panel about cosplay and disability, and honestly, the turnout was amazing! My friends and I had such a great time connecting with everyone that we’d love to continue doing the panel for the foreseeable future. But we’re also hoping to take things a step further. We want to build a community for disabled nerds, geeks, gamers, cosplayers, anime fans, and anyone else who loves this stuff. A place where we can meet people who share our interests, talk about our experiences, support one another, and just enjoy being nerdy together. We’d love to hear from you! Are you a disabled cosplayer? Gamer? Anime fan? Comic book nerd? Or maybe you’ve always wanted to get into cosplay but weren’t sure where to start Comment below or message me directly if you’re interested in being part of this community. And if you have ideas for panels, meetups, discussions, or activities you’d like to see, please share those too Let’s see what we can build together.

I have a friend who works with disabled adults, mostly people with cognitive disabilities. Her job is to help them learn skills that can eventually help them get a job.
There is one guy in her program who has Spina Bifida, but for some reason, the staff treat him differently from the other clients. They do a lot of things for him that they would normally encourage the other clients to learn how to do themselves. They also limit him from doing certain tasks, even when he tells them he can do them.
That got me thinking: How many of you have experienced something similar because you have Spina Bifida?
Have you ever had someone assume you couldn’t do something, limit you, or do something for you even though you knew you were capable of doing it yourself?
Personally, I’ve only experienced this a handful of times throughout my life, so I’m curious how common it is for others in the community.
I’d especially like to hear what happened and how you handled it.

Yesterday, I made a post asking everyone about their hobbies, and I got some amazing replies. Many of you do some really interesting things, and I absolutely love seeing that side of the community. But it got me thinking about something: Why don’t we see more of this? Why don’t we encourage each other to show these sides of ourselves more often? I’ve seen many people say they can’t do some of the things others in this community talk about because they have Spina Bifida. And that honestly makes me curious about what’s going on. Why do we hear so much about the things we can’t do, sometimes even the most basic or fun things, while the things so many of us can do, and genuinely enjoy, often seem to stay quiet? I’m not saying the challenges aren’t real. They absolutely are. Spina Bifida can create limitations that other people may never have to think about. But I also think there’s something powerful about showing each other what is possible. Maybe someone sees you talking about a hobby and thinks, “Wait, I have Spina Bifida too. Maybe I could try that.” So I’m curious: Do you think our community focuses too much on what we can’t do and not enough on what we can? And if so, why do you think that happens?

What does everyone do for fun? I’m curious. I have met quite a few who have said they can’t do a lot of things because they have Spina Bifida, even something as simple as playing video games. So I’m curious what everyone here does for fun. As for me i play video games, go to comic and anime conventions, dress up in cosplay, watch movies, and hangout with my friends. What do you do in your spare time?

There are many challenges we face with Spina Bifida. Some are social, like making friends or something as simple as starting a conversation. Others are physical, like bowel and bladder control. If you’ve been paying attention to my posts, you’ve probably noticed that I’ve made several suggestions about ways we might improve our circumstances. Most of those suggestions come from my own experiences. I’ve faced many of these same challenges, and I’ve found certain things that have worked for me. However, quite a few people have expressed that my answers wouldn’t work for them or that they aren’t realistic. For example, just the other day I made a post saying that parents should teach their children life skills so they can grow up and navigate life a little easier. Someone responded by calling me autistic because of that suggestion. So, instead of me telling you what I think the answers are, I want to ask you: What are some of the major challenges you face living with Spina Bifida, and what do you believe is the solution to those challenges? I’m genuinely curious to hear your perspective. Maybe there are challenges I haven’t experienced, solutions I haven’t considered, or approaches that have worked for you that could help someone else. Let’s hear what you think.

A Conversation With Parents
There is a pattern I see over and over again in our community, and I want to talk about it.
Now, before anyone gets worried, I’m not here to point fingers, yell at parents, or tell you that you’re doing something wrong. I just want to have a conversation. Every parent wants the best for their child. You know how cruel the world can be, and naturally, you want to protect your child from experiencing that cruelty. You want to make things easier for them and prevent them from being hurt.
But sometimes, there can be a difficult line between protecting your child and preparing your child.
Over and over again, I see situations where parents of adults with Spina Bifida still struggle to let their child make decisions for themselves, even though that child is now an adult. And yes, I know, Spina Bifida is a snowflake condition. No two people are exactly alike, and everyone’s abilities and needs are different.
But despite those differences, I see something concerning: sometimes, people with Spina Bifida are treated as though their diagnosis defines what they are capable of. I see adults who were taught certain skills growing up, but were never given the opportunity to actually put those skills into practice on their own. I see adults who were never taught how to cook, clean, manage money, or take care of everyday responsibilities because someone was always there to do it for them. And eventually, that child becomes an adult who is still being treated like a five-year-old. So let’s take a step back. What does any person need in order to grow into a functioning adult? They need to learn how to take care of themselves. How to cook. How to clean. How to manage money. How to hold down a job. How to navigate friendships and romantic relationships. How to communicate. How to make decisions. How to experience failure and learn from it. So parents, I want to ask you something: Where in your daily routine are you making time to teach your child these skills? I understand. I really do. Between doctors’ appointments, surgeries, bowel and bladder routines, therapies, medications, and everything else that can come with Spina Bifida, it can be incredibly difficult to find the time and energy to focus on anything beyond the medical side of things. But that’s exactly why I think this conversation is important. When so much of a child’s life revolves around their medical needs, there is a danger that they can start to feel like their diagnosis is who they are. And they’re not. They are a person first. Do you talk to your child and ask them about their day? Their favorite food? Their favorite color? What games they like? What music they enjoy? What makes them laugh? What are they interested in? Even something as simple as taking five minutes a day to sit down and genuinely talk with your child can make a difference. Because as they grow, I want them to know how to talk about more than Spina Bifida. I’ve met adults who struggle to carry a conversation, and when they introduce themselves, some of the first things they tell people are things related to their disability. There is nothing wrong with talking about Spina Bifida. It is a part of who we are, and nobody should ever be ashamed of it. But it is only one part of who we are. Teach your children to talk about their hobbies. Their interests. Their dreams. Their favorite movies. Their friends. Their passions. The things that make them them. Because they are so much more than their diagnosis. So parents, let’s get a discussion going. What are you doing every day to help your child explore different parts of their personality and discover who they are as a person, not just who they are as someone with Spina Bifida?
I genuinely want to hear from you.

The other day I saw someone share their thoughts and feelings about some of the things parents of children with Spina Bifida say in this subreddit. It got me thinking. I’ve received my share of backlash for some of the discussions I’ve started here, and while I know not everyone will agree, it made me curious about something. What do most of you hope to gain from being part of this community? I’m not looking for any specific answer. I’m just trying to better understand what people come here for, whether it’s support, advice, education, advocacy, sharing experiences, or simply knowing they’re not alone.
My hope is that by understanding each other’s expectations, we can navigate discussions a little better. Maybe we can find ways to have difficult conversations while still making this a place where people feel heard and respected, even when we disagree.

I’ve been talking a lot about autonomy lately, and it got me thinking. Autonomy doesn’t always mean doing everything alone. Sometimes it’s about having the choice. So I’m curious: where do you draw the line? What are the things that are important for you to do yourself, and what are you comfortable letting others help with? Has that changed as you’ve gotten older?

I’ve noticed something that seems to extend beyond just the Spina Bifida community, and I’m curious if others have experienced it too. It feels like there’s a gap in teaching life skills for people with disabilities.
For example, I attended an Abilities Expo where modified vans with hand controls were being demonstrated and sold. It was great to see the technology available, but it left me wondering: once someone buys one, where do they go to learn how to drive it? The equipment was there, but I didn’t see much emphasis on teaching people how to use it.
I’ve noticed something similar in my own work. I work in early intervention with autistic toddlers, where we spend a great deal of time teaching skills like communication, social interaction, motor skills, and independence. Years ago I also worked with autistic adults, and many days it felt like the focus had shifted from building new skills to simply keeping people occupied. Of course, everyone’s abilities are different, but I often wondered whether more could have been taught if we had continued building on what they were capable of. It made me ask myself: if we have early intervention programs and adult programs, what happens in the years in between? Why does it sometimes feel like there’s a missing piece connecting the two? Have you noticed this in your own disability community or with your own experiences? Were there skills you wanted to learn but never had the opportunity to be taught? Or have you found programs that helped bridge that gap?
I’d love to hear your perspective. Maybe together we can identify what that missing puzzle piece really is.

I just wanted to take a moment to say thank you for all the love and support I received. So many of you commented and reached out with kind words, sharing what my posts have meant to you. Honestly, it’s the first time I’ve felt this level of support from the Spina Bifida community, and I’m incredibly grateful. I’d love for us to keep that momentum going. Is there someone in your life who has made a difference for you? Have you ever told them how much they mean to you? Or maybe I’ll ask a different question: what keeps you coming back to this community? Have you found the same kind of support here? What has your experience been like? Let’s continue building a community where we encourage one another, celebrate each other’s successes, and help each other become the best versions of ourselves. I look forward to hearing your stories.

To everyone here,

I think it’s time for me to step away. Over the past weeks I’ve shared a lot of my thoughts, experiences, and struggles. Some of you connected with them, reached out, and shared your own stories. For that, I am genuinely grateful. Those conversations reminded me that none of us are as alone as we sometimes feel.
Others strongly disagreed with what I had to say, and that’s okay. We all come from different experiences, and I never expected everyone to see the world the way I do. My goal was never to tell anyone how they should live their life. I only wanted to share what has helped me: taking small steps toward independence, challenging my own fears, and believing that growth is possible even when life is difficult. Those ideas changed my life, and I hoped they might encourage someone else. It’s become clear that my perspective isn’t what this community is looking for, and I respect that. Rather than continue creating division, I’d rather step away with appreciation for the people who listened, encouraged me, or simply took the time to read. I sincerely wish every one of you the best, wherever your journey takes you. I hope you continue to find strength, support, and happiness in your own way. Take care of yourselves, and thank you for the conversations.

Goodbye.

Change.
It isn’t easy.
But if you want something different in your life, you have to be willing to change something.
That wasn’t easy for me either. If you’ve read my previous posts, you’ve seen the many conversations I’ve had with myself. Those conversations were about challenging negative thoughts, changing my perspective, and learning to grow. I’m sure many of you can relate. So what makes change difficult for you?Is it the uncertainty? Are you comfortable with how things are? Does stepping into the unknown feel overwhelming? Those feelings are completely understandable. But if we want our lives to improve, we have to be willing to put in the work, even if it’s just one small step at a time. Some of you may be thinking, “I want to get rid of my disability,” or “I just want to walk.” I understand those feelings. There are some things we simply can’t change. But what we can change is how we respond to our situation.
I’m not saying life isn’t hard. I know it is. I’m simply saying there are things we can do to make it a little easier on ourselves. Maybe your goal is to make a friend. That’s a great place to start. Try making small talk with someone. Ask how they’re doing. Show genuine interest in their hobbies or passions. Before you know it, the conversation starts to flow, and that small step could become a meaningful friendship.
Or maybe your goal is to lose weight. You don’t have to change everything overnight. Start by drinking more water. Add a few healthier meals each week instead of focusing on cutting everything out. Small, consistent changes are often the ones that last.
Growth rarely happens all at once. It’s usually the result of small choices repeated over time. So I’ll leave you with this: What’s one thing you’d like to change about your life right now? Big or small, I’d love to hear it. Let’s encourage one another, celebrate the small victories, and keep growing together, one step at a time.

Every person has a story that others can’t fully see.
We all have experiences, struggles, strengths, fears, and dreams that have shaped who we are. Sometimes people make assumptions based on a first impression. If you could help people understand just one thing about you, what would it be? It can be something you’ve overcome, something you wish others wouldn’t assume, a value you live by, or simply something that makes you… you. Let’s take a moment to learn from one another. There are no right or wrong answers, and I ask that we keep the conversation kind, respectful, and supportive. I’m looking forward to reading your responses.

One of the biggest confidence boosters in my life has been reaching the goals I’ve set for myself. Some have been big, like losing weight, saving money, or getting a job. Others have been as simple as drinking more water each day. Every goal we accomplish reminds us that we’re capable of more than we sometimes give ourselves credit for. So, what’s a goal you’re working toward? It can be something big or something that might seem small, every step forward matters. Let’s encourage one another. Share a goal you’d like to reach, and let’s celebrate the progress we make together.

Over the years, I’ve seen many of the same questions come up again and again. *“*How will I make friends if I have Spina Bifida?” “How can I become more independent?” “Will my child be okay as they get older?” These aren’t just questions I’ve heard, they’re questions that my parents and I have asked ourselves too. If you’ve followed my posts, you’ve seen parts of my journey. I’ve struggled with fitting in, learning to do things for myself, finding a job, building confidence, and navigating many of the challenges that come with life and disability. I’m still learning every day. So I’d like to open the conversation to all of you. What are you struggling with right now? Where do you want to grow? What questions do you wish you could ask without feeling judged? Leave a comment. Whether you’re looking for advice, guidance, encouragement, or simply someone who understands, let’s talk about it. If I don’t have the answer, maybe someone else in this community will.
And if this post isn’t for you, that’s okay. I simply ask that you leave the space open for those who may need it. You never know whose life could be changed by a kind conversation.

When I was a boy, I was taught that I could do anything I set my mind to.

So I believed it.

I held onto that idea through every surgery, every setback, every obstacle. No matter how difficult life became, I kept trying to do my best.

The challenges were harder than I ever imagined.

But the hardest part wasn’t my disability.

It was the voices around me.

“You shouldn’t be living on government assistance. You can work.”

So I found a job I love.

Now when I talk about my work, people grow quiet. They change the subject. Some look at me as if I’ve done something I wasn’t supposed to do.

I share a meal I cooked for myself.

“You know, not everyone in your situation can do that.”

I share a hobby I’ve grown to love.

“You’re showing off.”

I talk about the work it took to get here.

“You’re just lucky.”

Lucky?

Luck didn’t get me here.

Years of frustration, failure, practice, and perseverance did.

Then I started asking myself…

If I can learn these things, why can’t others?

So I tried to encourage people.

Find a hobby that makes you smile.

Learn a new skill.

Take one small step toward the life you want.

Instead of encouragement, I was met with criticism.

“That’s ableist.”

“You’re being insensitive.”

So now I’m confused.

You told me to work.

I did.

You told me to become more independent.

I did.

You told me to find joy in life.

I did.

You told me to encourage others.

I did.

Every piece of advice I was given, I followed.

Yet somehow, every step forward became another reason to be criticized.

So…

What am I supposed to do?