Pretending to be cooler than we are. Last post in the “Vegas Kam” and “Disabled can be” series. Out of fear of judgment, I was unsure if I should post this candid celebratory (anniversary) cigar moment with our friend and Jason on my Instagram. it’s really no big deal, but lately, I’ve been receiving hateful comments from strangers, telling me I’m an animal abuser because I cut Pippi’s hair or because I took her for a walk without socks 😳 It's hard being public because you can become a target of judgment (a topic I want to discuss more later. This self righteous quest to assess everyone by one line, and our hateful reactions if they don’t abide by that line, has gotten out of hand). This behavior is something I’ve always dreaded and struggled with when I was trying to decide if I wanted to go “all the way” as a public advocate.
But Jason said I shouldn’t censor myself, and wants me to show that disabled aren’t frail, conservative, wholesome, innocent, child-like objects we’re typically presented as. We’re multi-dimensional humans with varying interests and sides like everyone else. I can be an advocate, a children's book author and sassy, all in one spin.
Society likes to image disabled as one thing. We’re positioned as the “uncool” group who don’t belong and are better hidden. In society’s eyes, we can’t have interests, sexuality, be accomplished, opinionated, educated and intelligent or edgy. We can’t be travelers. We can’t be interesting. We can’t be a (company) asset. We can’t be fashionable. We can’t be talented. We can’t be sexy. We can’t. We can’t. We can’t. And if we are any of these things, it’s pure shock from strangers, perhaps accompanied by a baby voice, telling us how brave we are. This is because the script says we can ONLY be sad and disabled; to be told by passing strangers, “If I were you, I’d kill myself” or used by society as inspiration porn to feel better about themselves or their lives because, “Thank God, we aren’t like them.” Hashtag “blessed”.
Much of my advocacy is merely sharing who I am - to convey the obvious, that I (we) are humans with the same needs and desires. Before my disability I was an explorer, curious and fun. but one doesn’t necessarily change just because they’re disabled. If anything, I’ve become more resolved in these areas and a better human because of this experience.
Disability is not special, it's a part of the human experience, and many times dictated by mere cells. But this doesn’t mean we have to lose ourselves or interests. It’s a matter of adapting, not always looking in the rear view mirror, and working with what you have.
The flip side of this photo is it only shows the fun, but there’s so much more. I look fine, but you can’t know if someone is sick or struggling just by looking at them. This is true for all of us, disabled or not. You can’t know that after a couple hours it feels like I’m sitting on concrete. I’ve lost so much muscle and fat in my butt due to weight loss, because of my undiagnosed chronic stomach issues (unrelated to my muscular dystrophy), that it’s become painful to sit. Basically, sitting on bone. You don’t realize how necessary muscle is, from your butt to your toes, until you lose it.
An Instagram vs reality example: my 12 pack of Ensure was sitting next to our alcohol on our Vegas hotel minibar. For the past few years my stomach is so weak I can barely eat or drink alcohol.
When I’m in explorer mode or group fun with friends, adrenaline sets in and I can push myself to the limits. But afterwards it feels like 30 semi trucks hit me (worth it if I get to live). You can’t see the fatigue or the push. From this photo, you can't see that on road trips, at this level of progression, we now have to stop every hour-and-half, so I can lean forward, readjust and alleviate pain and pressure because it’s so painful (even with a cushion). In the 15 years I’ve lived in California, we’ve clocked countless road-trips. I could travel hours without stopping. This has changed. I can still do road trips but it requires adapting, and grinning and bearing the pain in order to live.
I can be sexy, confident, able, insecure, sad, exhausted and in pain, all in one day. All in one photo. I can be all dressed up with makeup but feel like absolute crap. I’m not always confident. not always into exploring. I have a lot of bad days, but the point is we’re multifaceted and nuanced. We can be many things at once.
In this photo is the real Kam. I share a lot of difficult and honest posts, but the other side of me is I just want to have a good time and laugh with good people — void of drama or toxicity because we really don’t have that much time on this earth. I’m an explorer of places, ideas and people, and this is the space that gives me freedom to be the person I am beyond the disability. Because of the disability. I'm not trying to be an inspiration, I’m just out here trying to live my life like everyone else. Try not to lose your sense of self in life’s ripples. Be you. We can, and even more so if given access. #KamsWheelsTravel
*Disclaimer; smoking isn’t cool, kids!
*I’m not on my blog as much, more frequent on Instagram. Follow me for more ♿️ travels, mini-memoirs, disability and accessibility musings and art @ Instagram.com/kamredlawsk
