u/Adaptive_Adam91

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?

I want to improve, but you want me to stay safe.

I want to try something new, but you’re afraid I’ll get hurt.

I want to be accepted, but you’re already preparing me for rejection.

Every opportunity to grow… every chance to try something different… every step toward independence…

is met with doubt.

With fear.

With another safety net.

You tell me you want me to experience life.

But how can I experience life if you never let me live it?

Everything I’ve ever wanted exists just outside this bubble you’ve built around me.

You call it protection.

But is it really protection…

or is it another limitation?

How am I supposed to discover my limits if I’m never allowed to test them?

I tell you I want friends.

You point me toward people who look like me, live like me, and have the same disability as me.

But how can I learn about the world if I’m never encouraged to step into it?

I tell you I want to date.

But I don’t even know how to start a conversation because you’ve always spoken for me.

Other people discover hobbies.

They develop passions.

They make mistakes.

They learn who they are.

I know my disability.

I know my limitations.

But I was never given the chance to discover everything else.

I’m more than this disability.

I’m more than the life you’ve planned for me.

I’m my own person.

You tell me you’re afraid of the day you won’t be here anymore.

But you’ve never prepared me for that day.

You’ve protected me from failure…

while also protecting me from growth.

So when someone asks me,

‘Tell me about yourself.’

I don’t know what to say.

Because my world has been kept so small that I don’t know who I am beyond these walls you built to keep me safe.

And when the day finally comes that you’re gone…

how safe will I really be?

Because safety without independence isn’t protection.

It’s dependence.

And dependence is a fragile place to leave someone you love.

“Are you okay?”

“No… I’m not.”

“What’s wrong?”

“You should know.”

“…Is it my fault?”

“Yeah. Every time I include you, even hint that you’re there, everything changes.”

“I’m sorry.”

“People treat me differently the moment they find out about you.”

“What can I do?”

“I wish you wouldn’t hold me back so much.”

“I really try not to. If anything, I’ve spent my whole life trying to make you stronger.”

“Sometimes it feels like you’ve done the opposite.”

“I’m sorry.”

“…”

“So… what can I do?”

“Nothing. We’re stuck together.”

“Have you ever thought that maybe you try too hard to hide me?”

“What do you mean?”

“You spend so much energy pretending I’m not here.”

“I just want people to see me.”

“They can.”

“They stop seeing me the second they see you.”

“Some people might.”

“Most do.”

“And some won’t.”

“…”

“It helps to be honest with people.”

“Yeah, but it’s not everyone’s business.”

“They don’t need to know everything.”

“They don’t?”

“No. Just enough to understand. Enough to know when you need help… and when you don’t.”

“What if they use that information against me?”

“That’s possible.”

“…”

“But it’s also possible they’ll surprise you with kindness.”

“I’m not so sure.”

“If you don’t tell them anything, they’re forced to fill in the blanks themselves.”

“And people usually get it wrong.”

“Exactly.”

“So where do I start?”

“Start with my name.”

“And then?”

“Share only what the situation calls for. Sometimes people only need to know a little. Other times they’ll need to know more. You get to decide.”

“…That sounds reasonable.”

“So… are you ready to try this again?”

“…Yeah.”

“I won’t hide you anymore.”

“Thank you.”

“What was your name again?”

“…Spina Bifida.”

If you’re the parent of a child with a disability, this piece is for you. I know the questions you’re asking because I’ve heard them my entire life. They’re questions that come from love, fear, and wanting the very best for your child. There isn’t a perfect roadmap, and no parent gets everything right. But sometimes the greatest gift you can give your child isn’t protecting them from every obstacle, it’s preparing them to face the world with confidence. I hope this conversation offers a different perspective from someone who has lived with a disability his entire life. And if you’re a parent who has questions, worries, or simply needs someone to talk to, my inbox is always open. I don’t have all the answers, but I’m happy to share my experiences and hopefully make the journey a little less overwhelming. You don’t have to figure it all out alone.

Parent: My child has a disability. What do I do?

Me: You do your best.

Parent: What if they never learn to walk?

Me: That’s okay. There are other ways to get around. Don’t let one limitation convince them life has to stop.

Parent: I’ll have to take care of them for the rest of their life.

Me: You don’t know that. There are programs, resources, and support systems. More importantly, there are skills you can teach them now that will help them care for themselves later.

Parent: How will they ever make friends?

Me: The same way any child does. Teach them how to talk to people, be kind, listen, and be themselves. Disability doesn’t stop friendship.

Parent: Who will ever love them?

Me: You will. Love them the way they deserve to be loved, and you’ll teach them what healthy love looks like when they find it themselves.

Parent: The world is such a mean place. How can I protect them?

Me: You can’t protect them forever. Instead, teach them how to stand back up when life knocks them down.

Parent: I need to make everything accessible at home.

Me: That’s a wonderful place to start. But they won’t spend their whole life at home. Teach them how to navigate a world that isn’t always accessible.

Parent: I need to find other parents like me so my child can be around kids just like them.

Me: Support is important. Just don’t let other parents’ fears become your own. And don’t let your child grow up believing they should only be friends with other disabled kids. Friendship has never depended on disability.

Parent: What do I do if other kids make fun of them?

Me: You do what you can. But even more importantly, build their confidence so they know their worth isn’t decided by someone else’s opinion.

Parent: What if I’m not around to feed them or help them get dressed?

Me: Then teach them while you are. One day you won’t be there, so prepare them to be independent, not dependent. Every skill they learn today is one less thing they’ll have to fear tomorrow.

Parent: What if I fail?

Me: No parent is perfect. You’ll make mistakes. We all do. Just love them, believe in them, and teach them the skills they’ll carry for the rest of their life.

They don’t need a perfect parent.

They just need one who prepares them to believe they can live their own life.

“Someone should be taking care of you.”

Why?

Because you saw a wheelchair?

I’m a grown man.

I have a career.

I pay my own bills.

I take care of myself just fine.

“How could they let someone like you work with kids?”

Someone like me?

The children don’t see a wheelchair.

They see someone who listens to them, laughs with them, teaches them, and believes in them.

Years of training, experience, and dedication disappear the moment you decide my disability tells you everything you need to know.

“Where are your parents?”

Probably living their own lives.

I’m living mine.

You can talk to me.

“Why don’t you make friends who are disabled like you?”

Take a second and replace the word disabled with a race, religion, or gender.

Does it still sound like an innocent question?

Or does it suddenly sound exactly like what it is…

Prejudice.

“Do you know so-and-so? They’re also in a wheelchair.”

No.

Because wheelchairs aren’t a community.

They’re a piece of equipment.

There is more to my identity than what I sit in.

“Who feeds you?”

“Who dresses you?”

“Who bathes you?”

Interesting…

I came here for a doctor’s appointment.

Yet somehow my biggest symptom became your curiosity.

Not about my health.

About whether you believed I was capable of living my own life.

These aren’t once-in-a-while comments.

They’re almost daily.

Questions.

Assumptions.

Conclusions.

Made before I’ve even had the chance to introduce myself.

And whenever I explain how exhausting it is…

The response is almost always the same.

“They’re just looking out for you.”

Looking out for me?

Or looking past me?

There’s a difference.

Concern asks.

Prejudice assumes.

Concern listens.

Prejudice decides.

Concern sees the person.

Prejudice only sees the disability.

Despite all of that…

I still wake up every morning.

I go to work.

I pay my bills.

I cook my meals.

I make my own decisions.

I build my own life.

Not because I’m trying to prove everyone wrong…

But because I stopped waiting for permission to prove myself right.

I’m not asking people to lower the bar.

I’m asking them to let me reach it before deciding I can’t.

Because the greatest limitation I’ve faced has never been my disability.

It’s been other people’s imagination.

The voices never come one at a time.

They attack all at once.

“You have to do better.”

“This isn’t enough.”

“This is garbage.”

I’m trying.

I’m doing the best I know how.

I’m using the tools I’ve worked so hard to learn, the skills I’ve spent years building, and the resources I can actually afford.

“Have you tried this app? It only costs $150.”

That’s a week’s worth of groceries for me.

You spend money without thinking.

I have to decide whether inspiration is worth skipping meals.

“You don’t want this badly enough. If you really cared, you’d suffer more.”

Suffer more?

Suffering is all I’ve ever known.

I’ve carried it since I was a kid.

I don’t need another lesson in pain.

I need a moment to breathe.

“You need to be more confident in your work. Think of all the kind things people have said about you.”

Kind things?

No one says them to my face.

I only hear about them after the conversation is over.

It’s hard to build confidence with compliments you never actually receive.

“This again? Aren’t you over it by now?”

How am I supposed to be over something I’ve never been allowed to heal from?

Every time I start putting the pieces back together, someone reminds me why they broke in the first place.

Sometimes I don’t need advice.

Sometimes I just need permission to feel what I’m feeling.

“You don’t know what real struggle looks like. You don’t know real pain.”

Maybe not yours.

But I know mine.

I know what it’s like to wonder if I’m enough.

I know what it’s like to crave a genuine compliment.

To wonder what unconditional love feels like.

To smile in public while quietly questioning my own worth.

Don’t tell me I don’t know pain.

I’ve lived with it long enough to recognize its voice before it even speaks.

“All you care about is making yourself look good.”

No.

If that were true, I would’ve stopped sharing my failures a long time ago.

I tell these stories because I don’t want someone else to spend years lost the way I was.

If my scars can become someone else’s map…

Then every wound was worth surviving.

The voices don’t stop.

They probably never will.

They still shout.

They still accuse.

They still tell me I’m not enough.

But after every battle, one voice grows just a little louder than the rest.

My own.

And for the first time…

I believe it.

Younger me: So… what happened?

Current me: What do you mean?

Younger me: To everything we wanted. Lots of friends, married with a family, and a super cool job.

Current me: We have most of that… it just doesn’t look the way we imagined.

Younger me: I thought we’d be saving people’s lives or something.

Current me: Our job isn’t exciting in that way.

Younger me: So what do we do?

Current me: We help kids. We help them learn, grow, and believe in themselves.

Younger me: …That sounds kind of cool.

Current me: It is.

Younger me: What about being married?

Current me: Still working on that one.

Younger me: Really?

Current me: Yeah. But now we know the difference between what we want and what we need in a partner

Younger me: Oh…

Current me: Turns out those are two very different things.

Younger me: Our friends… are they at least cool?

Current me: laughs Yeah… but not for the reasons you’d think.

Younger me: What do you mean?

Current me: They show up when we need them. They make us laugh until our stomach hurts. They celebrate our wins, call us out when we’re wrong, and remind us we’re never alone.

Honestly… I can’t imagine my life without them.

Silence.

Younger me: I don’t think I understand.

Current me: That’s okay.

Neither did I.

Younger me: So… when do we finally find joy?

Current me smiles.

Current me: We don’t find it.

Younger me: What?

Current me: We stop looking for it in all the wrong places.

Silence.

Younger me: Then where is it?

Current me: It’s in the little things.

Coming home after work.

Cooking a really good meal.

Laughing with friends.

Watching a kid smile because they finally did something they thought they couldn’t.

The quiet moments that don’t seem important until one day you realize they’re the ones you’ll remember forever.

Younger me: That’s what joy feels like?

Current me: Yeah.

It isn’t loud.

It doesn’t need to be.

Younger me: I can’t wait to have that.

Current me smiles.

Current me: You already have pieces of it.

You just don’t know they’re pieces yet.