The Best Things Come In Small Packages

No matter who you are - whatever your situation may be, - motivation is hardly ever constant. We all have trouble, sometimes, keeping that high drive to achieve [something.] Which is how I think Bruno Mars’ cheesy hit, “Lazy Song,” came about… Anyway -

Just recently, I met a great group of folks who became disabled later in life. We got together because I am often asked by newly disabled people “How do I go back to living my life?” Naturally, I would respond by sharing information on the independent living philosophy/movement/culture, and how it’s totally possible to live a self-directed life [again.] But they want live/personal experiences, not [historical] facts. Only knowing a life with my disability, I can never answer that question sufficiently.  So I decided to make a day out of this. Investigate the organizations that serve that demographics, and facilitate a panel, and entitle it: “Adjusting to Life with a New Disability.” Appealing, right?

This panel turned out to be a group discussion/support. But it was great, nonetheless! There were four panelists; half with traumatic brain injuries and the other half were in vehicular accidents, resulting in spinal cord injuries. They each had their own unique perspective. But I noticed one commonality was motivation. Seeking it, or acknowledging it, and making it last. And something we all had in common was how important “the little things in life” are.

Appreciating the smallest accomplishments keeps us grounded but with a better understanding of where we’ve come from.

Self(i.e.) - Illness or Empowerment?

Selfie. It’s just like an autobiography. Except, the product is a photo, not a written essay – right, that’s called a “self-portrait.” Well, with almost every word being shortened as our lifestyles became faster-paced, “self-portrait” was not left behind. Thus, the birth of the modern term “selfie.” And how popular they have become.

Just the other day, I read an article, saying that those who post these selfies are “narcissistic” and/or have a “mental illness…” This is critical! Although there are no diagnoses including the word “selfie,” to prescribe treatment, “OCD” and “body dysmorphia” are the medical references. On the flipside, others are believed to be posting these picture, in search of themselves; not seeking constant approval from the [social media] audience. For the disability community, I agree with the latter statement.

It is too often that folks are being bullied for what they look like – for being different. But selfies seem to facilitate self-discovery, pride and accomplishment, and solidarity. In 2014, Bethany Turner, a [now] 24-year old model with Crohn’s disease posted pictures of herself in a bikini. “Okay… Isn’t that what models do?” Yes, but if you’re not familiar with it, Crohn’s disease affects the bowels, resulting in the use of a colostomy bag. Someone with a colostomy bag would be more likely to pose in such a way that hides it (i.e. from the mid-region, up.) Bethany chose to share a full body photo, to bring awareness of Crohn’s disease to the public, and show pride in the life she leads – hoping to empower others using colostomy bags.

Do you take selfies? Perhaps, you’re not feeling confident enough. Try researching someone with your same disability. Maybe their pride can channel to you. Don’t try too hard though; you’re great, just the way you are!

That New Chair Smell

Every four years. Or is it five now? Either way, it’s still a ridiculous time frame for how long people who use wheelchairs (motorized and manual) have to wait to pursue the process of getting new ones, let alone for regular maintenance checks. And, if you have not experienced this firsthand, yes, it is quite the process. Especially, for [what I’ve heard] how long it actually takes to build them…

I put a lot of miles on my wheelchair, on my independent Atlanta excursions. With that, tires go bald, mechanical parts need checked out, and so on. After just a year of this lifestyle, that new chair smell is already on its way out. Not to mention that I’m getting old and feeling the physical changes which are calling for reviews/adjustments to my chair at least four times a year! 

If we lived our lives shut in our homes, then I could maybe see where this figure came from. But that’s unrealistic. And unfortunate that this community is still believed, by some, to lack any desire to be a productive member of society because of the need for a wheelchair. (But that’s for an ADAPT, #FreeOurPeople, and #CommunityIntegration blog.)

Now to the meat of this blog! (Or, the tofu, for the vegetarians out there…)

Image description: Stock photo - A black complex, front-wheel drive motorized wheelchair, in its upright, standing mode.

As if the time waiting to start the process wasn’t bad enough, add at least a year and a half to that for the actual process!  That’s an average. And add medical costs. Said process involves:

1.  A prescription from your primary doctor noting the need, and administering an evaluation from an Occupational Therapist (OT) (a costly 15 min. appointment,)
2.  An evaluation and order/prescription from an OT (another expensive but necessary appointment,)
3.  Detailed wording from the primary and OT for insurance to review and approve the need for this device,
4.  Follow-up contact with the primary and OT, and an occasional call to insurance, to be sure the ball is still moving (which in most cases is delayed by insurance,)
5.  Reevaluation with the OT, to solidify the measurement and send them off to the wheelchair vendor,
6.  Wait! Did insurance approve them? Uh-oh… Hold on another month or three…
7.  And the ball is rolling again! The vendor is building the chair that will be ready in two to four days. Yes, days!
   
   Now, to get it in your possession… That’s more of a personal scheduling step than unnecessary procedural setback.

All of the steps above should be expected to take at least a month, unless noted otherwise. Remember, during the evaluation process, we can see the options/features available to customize accordingly with our personal needs (i.e. recline and tilt to weight shift, avoiding skin breakdown; elevate or lower to communicate with [non-disabled] peers; tire/wheel type, seats and cushions, etc.) This is your chair. Choose what works for you!