All about my wheels (Nemo)

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So apparently March 1st is International Wheelchair Day, so I’m going to do another post about my wheelchair, wheelchair life, and probably some other stuff, so buckle up (get it…wheelchair seat belts)! Despite wheelchairs being a fairly common thing, I have found that most people outside the disAbility community have very little experience with wheelchairs other than maybe being pushed in the awful clunky hospital wheelchairs that time you were super drunk and broke your foot. What that translates to is a) a lot of interesting/awkward questions I get asked from all kinds of people when I am out in my chair. I, personally, don’t really mind them as I am an open person, but I feel like there are still lots of people who always wonder but never ask. Wheelchairs are amazing pieces of technology that are not “confining” nor “bounding”. They allow independence, freedom, and no one stays in their wheelchair 24/7. 

 

My Wheelchair FAQs and Comments:

Excuse the poor picture
    • What kind of chair do I have? 
      • I have a rigid frame Quickie GT Ultra-lightweight manual wheelchair with a Smart drive MX2 power assist wheel. I have a Comfort Company Acta-Embrace back (removable and foldable), and a Comfort Company Vicare VersaX cushion with a custom cover. I have quick release semi-pneumatic wheels/tires.
      • Most manual wheelchair users get their chairs from either Quickie, TiLite (does titanium chairs), or Colors. Almost all ultra-lightweight manual chairs are custom made to the user’s body, preferences, and medical needs (pressure reducing cushions, seat belts, etc). Most ultra-lightweight chairs are under 25 lbs and the lightest is around 9 (frame only). As a manual chair user, every bit counts in effort of pushing, loading and unloading, and portability.
    • Are there differences in wheelchairs?
Different back but whole chair
      • HUGE differences. First off, I will only be talking about ultra-lightweight manual wheelchairs, which is what most full-time chair users pick between that and electric. For manual chairs, one of the first decisions you have to make is whether you want a rigid or foldable frame. Rigid is durable and smoother ride, but foldable can be easier to get in and out of cars. Users also get measured for cushion dimensions, footplate position, backrest height and depth, backrest angle, “dump” angle (how far down your bum sits), center of gravity (positioning of axel in relation to wheels, important for wheelies), floor to seat height, size of wheels and much more! There are also lots that you get to pick based on personal preference like color of the frame, spoke colors, type of caster (small front wheels), size of caster, wheel type (sport, normal), hand rim type, and more!
    • Can you move your legs?
      • Yes, I personally have full use and sensation of my legs. I can’t remember the exact numbers but a good majority of wheelchair users have some use or sensation of their legs. There are many reasons people use wheelchairs, so if you see a wheelchair user’s feet move or see them walking, don’t assume they are faking it…odds are they aren’t.
    • Why do you use a wheelchair?

    • Several reasons, technically, I am what docs and PTs call a “non-functional ambulator”. All that means is that for me, walking is inefficient, painful, tiring, and often dangerous. Some of the reasons I use my wheelchair are: dislocations and subluxations of hips, knees, ankles, spine due to EDS, chronic fatigue, dizziness, poor coordination, lack of proprioception (being able to tell where your limbs are in space), weak veins and heart/ blood pooling issues, inability to walk long distances, and muscle spasms (to name just a few!).
    • When was your accident?
      • Yeah… I get this a lot. Not everyone who uses a wheelchair has a spinal cord injury and not all of us were in accidents, there are several conditions or reasons a person might use a wheelchair, some congenital and some not.
      • Some common examples (*indicate congenital conditions or potential to be)
        • Spinal cord injury
        • *Spina bifida
        • *Cerebral palsy
        • *Ehlers-Danlos Syndrome
        • Stroke
        • Multiple Sclerosis
        • Chronic Fatigue Syndrome
        • *Epilepsy
        • Amotrophic Lateral Sclerosis (ALS)
        • *Osteogenisis Imperfecta
        • Traumatic Brain Injury
        • Amputation
        • *Spinal Muscular Atrophy and Muscular Dystrophy
        • Dysautonomia
        • Much more! We are as diverse as the rest of the population and no two users are the same!
    • *screaming* HOW ARE YOU TODAY MAAM? 
      • Wheelchair≠ hard of hearing ≠ intellectual disability (even if it did, not the way to go)
    • At least your feet don’t hurt, I’m so tired of standing.
      • I get this one A LOT, especially at events. Yeah, my feet may not be sore but make no mistake, wheeling around is brutal on your shoulders, arms, fingers, and neck. Especially as an EDSer. Thankfully, my Smart drive (link to video demo) allows me to save spoons by automatically matching my current push speed until I tap my bracelet controller or grab my hand rims to break.
    • What is the worst thing about being a wheelchair user?
“Build a ramp they said. Its the law they said.”

      • Tie between grocery shopping, ice, or “accessible” buildings.
      • Grocery shopping is a pain because you cant reach 1-2 of the top shelves from a seated level, you need mad skills to push a cart and wheel (alternating hands and pushing) otherwise have to balance a basket, once you get home you still have to get them inside…
      • Ice sucks on wheels
      • Like of all the architectural feats and amazing designs and still like 80% of buildings have steps to get into them. Smh world.
    • How do you drive? (answered for people who don’t have leg function)
      • Manual hand controls or electric ones
Example of manual controls
      • Manual ones consist of two poles with clamps that go around the gas and brake and you push the gas one for… gas and the brake one for the brake. These can be easily removed and don’t permanently alter the car. This leaves one hand for steering. Many people have some variation on the “suicide knob” which attaches the wheel and makes it easier to turn with one hand
      • Electric controls have to be retrofitted with controls that work for the driver but most have a control setup for brake and gas and then the steering wheel
  • Here let me give you a push? or *grabs your push handles and starts pushing you without asking*
    • NOOOOO! Thank you for caring and being nice, asking is always fine. First off, it takes some skill to properly push a wheelchair on normal terrain, certain sized cracks might send you flying, ramps are hard to control speed on, and people have to be tactfully avoided. Second, NEVER touch, push, or grab a person’s wheelchair without their permission. It is terrifying, rude, and dangerous. I have had it happen many times and end up with dislocated fingers, some bruises, and occasionally damage to my chair.
  • Do you need help? “No, thanks” No really, let me help.
    • Similar to above, but believe it or not, we get along in the world fairly independently most days. Again, always okay to ask but NEVER ASSUME.
I love my wheelchair. It is my freedom, my independence, and my ticket to less pain. It is a piece of equipment, but also an extension of me. Treat it like you would treat me. Happy early international wheelchair day, I hope it is wheelie great! *badumchhh*
when a tree is more important than access

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