Want vs. Can
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We often hear the adage of “want vs. need” where you parse out which things in your life you actually need and which things are merely wants.
When you’re disabled though, it’s not really a want vs. need scenario. It’s a want vs. can. What does that mean? Well, the idea of wanting something isn’t so easily achievable when you’re dealing with a disability and an inaccessible world. You might “want” to do something, but your body or a lack of accessibility won’t allow it. I want to go up and down stairs easily, but my body just doesn’t allow for that. I want to get up off the floor without help, but my body doesn’t allow for that. I want to be able to travel the world, but lack of accessibility in a lot of places means that likely won’t happen. I’m not even including the COVID and damaged mobility aid of it all when you travel either. I want to live on my own with my dog, but until my osteoporosis is under control, I can’t. And even when that happens, I still can’t do everything my dog needs without live-in help. I want to be able to drive to see my friends, or do a solo road road trip but my body won’t allow that. I want to be able to walk on the beach, but I just can’t anymore. I can’t keep my balance and my walker doesn’t go through sand unless it’s really firmly packed.
People often say “mind over matter”, but it’s a privilege for people that can apply to. No matter how much those of us with disabilities “put our minds” to something, we may still never be able to do it because of what our bodies can or can’t do. That’s not to make disability sound like some horrible life sentence…it’s simply a fact. It’s also ableist and ignorant to think that if we all just thought hard enough or had enough determination (yes, I realize that’s in my Substack name), that we would never encounter any kind of challenge again.
The other part of this want vs. can scenario is when people try to argue with you about it. Oftentimes because of the adages and reasons I’ve mentioned above. When I’m told I can find a way if I want to, or I’m just “living in fear”. The things that I can’t do aren’t feelings, they’re facts. Some things might seem like a choice I’m making, but when it comes to my health and well-being, it’s not really a choice. As an example, if I did live on my own fall and break a bone, I wouldn’t be able to work anymore to be able to afford living on my own (even if I was approved for disability. Please look up what disability pays and what it costs to rent an apartment in California if you have any doubt about that). I would also have to have someone come stay with me to help with everything because I wouldn’t be able to get out of bed on my own anymore if I had any kind of broken bone.
There are so many things that I can do, so I try to focus on those. The point in sharing all of this is to illuminate the idea that the world is not one size fits all. Things are different for all of us in different ways. For people with disabilities, it’s having to consider what we can do over what we want to do in a lot of situations. Or figuring out how to safely marry the two. When I used to travel, I was never able to do everything on the trip. I had to sit some stuff out. Did I want to do everything? Of course. But I did what I could, and I still ended up with some great travel memories. When I look back, I only think of the things I did too and not things I wasn’t able to.
It’s interesting to me when people say “think about what you want”, because it’s just not that simple in a lot of cases. I could easily tell you what I want, but it may not be something I’m able to do, so what’s really the point in thinking about what I want? Sure, it’s helpful in some situations, but the first question I usually have to ask myself is “will I be able to do this? or “how can I safely do this?” Will it be accessible? Will I be able to find parking? Can I use my walker there? Is this something I can do on my own or do I need help? Can I enjoy it wearing a mask? (Because COVID is very much a part of the “can vs. want” experience for those of us who still have to be safe too). Is there uneven pavement or something that could potentially make me fall? There are always so many things to weigh and think about, so wanting sometimes ends up being just a small part of the equation.
I would kindly request for no advice giving or “have you tried this?” on this post too. Though often well meaning, sometimes we just need to share our reality without other people’s input since that input can potentially invalidate our reality or feelings. It can also come across as people thinking that we hadn’t already thought of that solution (cause when you’re disabled you’re forced to constantly be thinking about solutions or being resourceful), which for me, has come across as condescending or insinuating that it’s “all in my head” or it’s just my fear or anxiety.
Are there any examples of can vs. want that you can think of in your life? Anytime you really wanted to do something and then had to figure out how you would be able to?
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I feel the same way that Jackie feels. Am I putting myself in the wrong direction? I’ve been feeling that way for 5 years now. But I feel right now my course of where I want to be maybe going in a different direction for now. I’m scared to death about it. And it may not work. But for right now I’m going into it. But is it “all in my head” for thinking I could do this? It really frustrates me that I have to turn another way to go through it. And I completely understand what Jackie is feeling and as I always hate to compare what it was before I got MS. I will never be that way ever again. It’s just memories. Some of them great memories, but sometimes I feel self-centered saying that’s not enough.
Does that make me a bad person for thinking that way? Am I the only one who thinks that way sometimes? Of course I don’t think that way all the time. But sometimes it just goes through my brain.
I generally agree with you on avoiding “have you tried this?” You have to read the room very carefully with that one, and then I usually try to say something like, “have you ever heard of X?” so the person can tell me “been there, done that” or “no, I haven’t.” A few weeks ago, at my tattoo consult appointment, my (longtime) artist was telling me about her chronic neck/shoulder/nerve pain that no doctor has been able to figure out, that comes and goes, and that often keeps her from working. I did the, “have you ever heard of pain reprocessing?” and she hadn’t and was super curious. She pretty immediately looked into the few tools I shared with her and started feeling a little better almost immediately, and she’s going to keep at it.
The read the room part is that this is obviously not a strategy that everyone can benefit from, so it would be ridiculous to bring it up to everyone in pain. But pain that comes and goes and has no clear cause is most often neuroplastic, and responds well to the guidance around teaching the brain it’s not in danger and doesn’t need to send the pain signals.
Ultimately though, respect someone’s desire to not want the info. I appreciate that you added that to the end of this post!