November 2, 2021 at 2:00 pm #28448DeAnn RKeymaster
I’m not sure if it’s a me thing or a disability thing, maybe you can weigh in on this, but I’ve always put in a lot of effort in not letting my SMA interfere with others. Or at least as minimally as possible. For example in a store I’ll make sure to leave room so people can get around me. Heaven forbid I block an isle. At home I wear clothes that I know will be less of a struggle for my caregivers to put on me. Although I don’t compromise on wearing jeans (for you younger generation it’s the leggings of my era.) Recently I’ve made some changes that make my world easier. Unfortunately it adds complexity for others, but darn it, I’m okay with that. Or at least I’m trying to be.
If you follow my vlog you’ll know I converted some of my lights to smart switches. With them I can control the lights with Alexa and everyone else can still use the switch. I had the opportunity to convert the rest of my lights to smart technology however using smart bulbs instead of switches. By doing this I have to leave the switches in the on position. Because I have caregivers coming and going I have sticky notes over the switches with what to tell Alexa. It’s been quite comical seeing everyone’s reaction when they can’t use the switch. Although no one has voiced their disdain with the change I get that vibe from some of them. It’s your choice if you’d rather do the laundry in the dark rather than talk to Alexa. If it means I can control the lights, darn it, I’m okay with that.
My JACO Robotic Arm is also an adjustment for others. Even though it makes my life easier it means more switches to workaround. It also means I like having certain things arranged in a certain way so I can access them with the arm. Apparently it’s a difficult concept to grasp. I’m still working on figuring out how to retrain my caregivers, especially the ones not receptive to change. It hasn’t clicked that if they put the cup in a specific spot now it means they won’t have to get me something to drink down the road. 100 reminders later if it means I can make myself hot cider on a chilly fall day, darn it, I’m okay with that.
Gradually over my 42 years I’m realizing this is my world. It’s okay to make it how I need it to be. If it takes a few extra minutes to put microwavable slippers on me, darn it, I’m okay with that. Will I still move over to make room in the isle at the store? Probably. But not because I feel like I’m in the way. Because it’s your world too, and I’m okay with that.
November 2, 2021 at 4:46 pm #28452Blake WatsonParticipant
Yeah, I feel you on this. That said, when it comes to my PCAs, I remind myself that they are being paid. I feel less of a need to avoid inconveniencing them because of that. It’s their job to make my life easier. It is definitely okay for them to learn to work around your life and needs.
November 4, 2021 at 7:16 am #28475AdamParticipant
Yep totally get you.
Especially “It hasn’t clicked that if they put the cup in a specific spot now it means they won’t have to get me something to drink down the road.”
Take an extra minute now to get it right & you won’t have me complaining later. Simples!
As Blake says they’re being paid too. Sometimes its hard not to raise your voice & say “well thanks for your input but I’d like this done that way & since I’m paying could you kindly do your F-ing job!” I’m a very easy going bloke who doesn’t like to make things difficult but when it comes to my needs its not a democracy, I’m supreme leader & whether you agree or not means bugger all to me.
November 4, 2021 at 9:08 am #28464Lupa FParticipant
Not sure what smart lights you’re using, but for some you can buy switches that you can stick to the wall. They’re like little remotes. Here’s the Hue version: https://www.philips-hue.com/en-us/p/hue-dimmer-switch–latest-model-/046677562779
Of course that’s more expense, but if it saves a little hassle for everybody it might be a good investment. Since my alexa isn’t that close to my computer desk, I stuck one of those to the side of my desk and just tap it to turn on my desk lamp and then use alexa to turn it off when I leave my desk, it works nicely.
As far as not interfering with others, I definitely try to do that. Whenever I’m out somewhere I almost feel like I try to hide so I’m not in the way of others. I’ll try to position myself in a corner or out of any pathways as much as I can. The funny thing is this doesn’t work in a place that’s crowded no matter how out of the way I think I am. Like at a crowded concert what happens is people see what looks like an empty space so they try to get where I am only to find me there and then have to maneuver themselves back out again.
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