Me, standing on the beach with my crutches. I'm wearing sunglasses and smiling. The ocean is behind me on a clear, sunny afternoon.

I’ve talked a bit about this before but today will be more detail about how it’s impossible to expect help from total strangers, being disabled. In the past, I’ve said it’s because I was never afforded the particular luxury, assuming someone non-disabled will help me. That’s still true — it’s practically nonexistent. In fact, it’s pretty risky business. What if I take the subway solo (again) on the assumption that I’ll get help if I need it? What do I do if they don’t? If I have to struggle for any reason to get from the platform to the train, need help and don’t get any? That’s a position I never want to be in. It’s just too much risk. In most scenarios, I have to rely on myself — only me. That’s just the way it is. Call it what you want — self-reliance, independence, whatever. A loner, perhaps. I always liked the sound of that, if we’re being completely honest. At least that’s what it felt like for someone having spent their life on the edge of society.

Ok, I can give someone non-disabled the benefit of the doubt for the sake of this post. So I’m stuck somewhere and they want to help but they don’t know how. I’m instantly transported to a shitty situation again. What am I supposed to do? Explain what I need and how to do it? Essentially, yes. It’s my responsibility again, explaining why I can’t do something and how being disabled translates to this moment. In an ideal world, I wouldn’t have to do any explaining. But we all know this world is far from ideal. Maybe it’s because of lack of exposure but in my experience most people, despite good intentions, have no idea how to help.

Let’s play this game again, though. I decide to go to the beach and make the rather bold and daring decision to go into the ocean unaccompanied. Now, I’m far too anxious and overly-cautious to do this in real life but just go with me. So I’m in the ocean, just up to my shins. My crutches lie on the sand behind me and, by some miracle, I’m standing letting the water hit me. What happens next? The inevitable. I lose my balance and fall. And, by the way, I can’t swim. Never could. My balance clearly sucks so I can’t get back up with waves hitting me. Lots of people are around, playing in the water. They want to help but they just don’t know how. Sound familiar? What do you expect me to do, explain CP while being smashed by waves? Yeah, right! I guess for the sake of counterargument I could sputter “I’m disabled. I can’t swim. Help me.” But what if I can’t cause I’m too shaken up? Assuming help means I drown.

That’s why (first) I never go in the ocean alone and (second) I can’t expect help out of the blue. It just doesn’t happen often enough to even consider it. Sad reality, yes. Doesn’t mean I lack faith in humanity. That’s probably taking it too far. I’m just too realistic for my own good. I try to view my situation how it is, nothing more, nothing less. Easier to cope with.

As for the burden of explanation, I still don’t think it should be mine. Just like it can’t be my responsibility to overcome disability alone. Inclusion is your duty — yes, yours.

Expecting help and asking for it are very different. If I’m stuck, I’ll ask and get help. Maybe that’s gotten easier with the years and all that added maturity but feeling like a burden always sucks. It runs deep, compounded by not being able to expect help — it’s simpler and safer that way. Of course, I know I’m not a burden. Took me a long time to learn that, though. Really learn it. A lot of the time I feel like I’m still learning. Deep down in my heart. Tell myself all the time. You’re not a burden. You’re not a burden. You’re not a burden. Some days I’m more convincing than other ones. Life in general is a journey. So is life with a disability. It has its ups and downs. On my down days, the voice in my head doesn’t just tell me that I feel like I burden to the non-disabled people around me…the voice says I am. I don’t like those days. Who would? So I try to avoid feeling like that as much as possible. How do I avoid it? Relying on myself. Why depend on others when I can depend on me? You can call it hyper-independence if you like but that’s not the point. If I rely on myself, I don’t have to expect others to help — and I know they usually can’t, anyway, so it makes perfect sense. Guess it’s a protective mechanism. One that works. You know that old saying. “If it ain’t broke, don’t fix it.” I’m rather fond of it. Not expecting others to help as a protective mechanism has worked well for me thus far. Changing my methods might do more harm than good at this point.