FAQs: How Do You Operate Your Wheelchair?

Adaptive equipment is a vital part of any cripple's life. These are the items and devices that make our lives easier and give us greater independence. Whereas certain pieces of adaptive equipment that I own will improve either my happiness or my health, my wheelchair is unique in that it improves both my happiness and my health. It's easily the most important piece of adaptive equipment that I own, because it allows me to go out and personally experience the world. It's also an essential tool when it comes to managing the integrity of my skin and my pulmonary health.

I can control a wheelchair entirely on my own, but there are really only three methods that a high quadriplegic like myself can use to do so. These options are a head control, a sip and puff and a mini proportional joystick. I don't have any experience with a head control – I didn't possess enough neck strength to demo it in rehab – but I have used both a sip and puff and a mini proportional joystick. The latter is my preferred method of operation, and user preference is usually how one chooses the method they want to utilize. But before I talk about why I prefer one method over the other, I want to provide a little detail on each method of operation.

A sip and puff operates a wheelchair by the user either sipping or puffing on a tube connected to their chair. A strong puff will typically drive the wheelchair forward while a strong sip will cause it to stop and then reverse. When the user wants to turn their wheelchair, they'll provide either a soft puff or a soft sip depending on the direction they want to turn. A mini proportional joystick, by comparison, is essentially just a joystick but on a slightly smaller scale, and it operates exactly as you would imagine. The user can push it up or down to drive forward or backwards, and pushing the joystick left or right will turn their chair left or right.

While the use of a mini proportional joystick may be easy to understand, the thing that makes it somewhat difficult to use is that I have to manipulate it with my lower lip or my chin. Because my paralysis prohibits any movement below my shoulders, I have to position the joystick next to some part of my body that still functions. Although some might see having a bar and joystick mounted directly in front of my face as a drawback, it all mounts low enough to where nothing obstructs my field of vision unless I'm looking down at my legs or chest. Whenever I transfer out of my chair or engage in an activity that requires me to look down, like when I'm playing board games, for instance, the whole bar and joystick rig easily swings out to the side.

The biggest reason I prefer a mini proportional joystick to a sip and puff is that I believe it offers me the greatest amount of control over my wheelchair. And that's a huge deal. The world isn't built to accommodate wheelchairs of any size, but it really isn't built to accommodate wheelchairs like mine. I have to operate a very large and cumbersome wheelchair because of my customized seating and ventilator. Even though my chair's mid-wheel drive cuts down on its turning radius, it still takes a good amount of room for me to turn and position my chair. The world is also a complicated enough  to navigate on its own. I don't need my chosen method of operation to complicate it any further. The other thing that I like is that I can converse with other people while I operate my chair. A sip and puff usually requires the user to keep the straw in their mouth whenever they operate their chair.

There are two other functions, however, that my wheelchair provides: 1) tilting my seating; and 2) elevating my legs. Being able to tilt my seating allows me to change my position throughout the day, and this is an integral part of staying healthy as a quadriplegic. Pressure sores can develop whenever pressure on an area of soft tissue obstructs or partially obstructs the flow of blood to that area. Tilting my seat allows me to shift my weight and provide relief to those areas that are prone to breakdown. Elevating my legs also allows me to stretch during the day, which can "feel" great when I've been stuck in the same position for hours, and manage my low blood pressure. Unlike when a normal person would faint from a severe low blood pressure episode, I must physically elevate my legs above my heart so that the blood that's pooled there will be redistributed (this happens naturally when a person falls to the ground after they faint).

In the grand scheme of things, I have a pretty basic wheelchair. It really doesn't do anything special or even all that complex. There are several wheelchairs on the market that can stand a user up or even climb up a 2" or 3" curb. While I'm sure that the latter option would've come in handy at some point, I prefer the basic functions of my wheelchair for one specific reason: the more functions something can perform, the greater the opportunity it has for malfunction. A lot of life with quadriplegia is about finding things you can control in a situation that is largely beyond your control. There are already a number of things that can cause me to stay in bed or miss an event. I don't ever want to have to change my plans because my wheelchair is being fixed.

– King Cripple