Soapbox time! (yet again … wheelchairs …)

I don’t get the whole wheelchair thing. Well, I get it, don’t understand why everyone does not. In case you are curious, Pearlsky’s wheelchair cost $8032.60. If you want to see the actual breakdown and full cost, click here.

Okay. Let’s see … if you want to go to the store or to school you can …

• walk
• run
• stroll
• take your car
• take your bicycle
• take your scooter
• ride your Segway
• hop
• skip
• skateboard
• and more

When your severely disabled kid needs to go to the store or school, she can

• go in her wheelchair
• ummm …
• well she can also … uh, no …
• I can put her on the ground and roll her there
• well there is always …, nah, social services …

Get it? The chair is their life, their transport, their living room chair, their dining chair, their scooter, their take-a-snooze-chair, their school chair, their desk chair, and pretty much their most valued possession. No? Tell me if I’m wrong.

When you buy a car, you may go to the car show, check with friends, test drive, read consumer reports. You go to the dealership and sit with a salespuke salesperson who shows you all sorts of fancy brochures and tells you all the thousands of options you can have. Undoubtedly, that salesperson has driven a car, and possibly the one s/he is trying to sell to you. Other than the price crap you need to endure, the person is helpful, knows every option, and has the information.

When you buy a wheelchair you do minimal, if any, research. There is no consumer report. There is no dealership or showroom to speak of. You sit with a salespuke salesperson with the fancy, yet totally meaningless, title of Rehabilitation Technology Supplier (RTS) which, as shown here is a complete farce. The odds are overwhelming that the RTS never even sat in a chair like s/he is trying to sell you, let alone has a kid in one. A physical therapist may be there as well, and what specific training do they have in wheelchair design or sales or needs? Some, yes, but minimal. And much of their training comes from the manufacturer with a very vested interest.

There is a lot of research you can do. You can search my blog (!). You can go to the manufacturer’s website and look at the owner’s manual, order forms, brochures, etc. all before any meeting with the sales people. You can know about your options and have questions ready.

Why do we do so much more for a car than for a wheelchair? How much research do you do for a new washer or dryer? Do you do more than for the wheelchair?

You must go to the meeting with a copy of the wheelchair order form, no? Look at that form, yes it looks daunting. BUT when you get to ordering the rear wheels, by looking at that form, you will know to ask the what a “Pneumatic Airless Insert” is (top of page 6). And I will tell you, it is important and a big deal. Or you will know to ask the difference between 12 and 24 inch tires, or the difference between 4 and 8 inch casters. Yes, the smart-ass answer is 12 or 4 inches, the true answers have more to do with how the chair will work on sand, gravel, ice, snow, being bumped over curbs or steps, where your child’s fingers will go, and more. The simple decision as to 12 or 24 (or in between) inch tires makes a huge difference in your and your child’s quality of life, and if you don’t know those are options, you, and your child, lose.

Does it come with removable and washable covers on the seat, the back, the headrest, the laterals? If not, can they be made? They custom made a set for Pearlsky’s chair because we need them on the laterals. Speaking of custom, you do know these chairs are NOT “off the shelf,” right? They are all custom made. Many (but not all) parts are on the shelf, but the chair is put together as per the order, and often some parts are specifically machined for that chair.

What types of seats are available? Fancy gel seats? Just foam? Why one above the other? How do you care for gel seats (and you must)?

Where are the breaks? Hand breaks are typically reachable from the side and the front. Do you want extensions on the hand breaks (YES)? Foot breaks (a pedal under the rear of the chair) are typically only accessible from the rear. Where will the chair be? In Pearlsky’s van, the rear of the chair is not accessible, nor is it when the chair is between her bed and changing table. Only hand breaks work, but that needs to be thought out.

I AM NOT TALKING ABOUT BEING CONFRONTATIONAL, this is purely being an informed consumer. Trying to purchase an item that will fit your and your child’s needs. These things cost thousands of dollars. Over eight in our case. And speaking of “fit,” what if your child’s caretakers are very different heights? Can you adjust the handles on the chair? There is a huge difference in pushing the chair if you are five foot two or six foot two.

Would you drive a new car home that did not work perfectly? What if it was scratched? What if when you turned the wheel it did not go (as several I rejected)? Would you accept a washer or dryer that was just delivered and was scratched? Or all the cycles did not work?

When the chair is delivered, check it out. Thoroughly. Does it work at zero tilt? Does it work at full tilt? In the middle? Do all parts of it work? Are the covers washable. DOES YOUR CHILD APPEAR COMFORTABLE IN IT? Is it easy to tilt or recline with your child in it? Is it comfortable for the shortest and the tallest care taker? Will the child fit in it with a winter coat and sweater?

Why accept it if it is not perfect? Why do we overlook scratches that we would NEVER accept on a car or a new oven? How is it confrontational or difficult to ask a company to sell you what your child needs?

At least with Pearlsky, her chair is her life. When it breaks, she is bedridden. She is in it 80%, if not more, of her non-sleeping life. Shouldn’t it be right?

The Quickie (and Zippie) wheelchairs are probably the most common for “our” kids. You should know something about their design … in the beginning … (from here):

Marilyn Hamilton
Tennis Wheelchair Maker
After a hang-gliding accident in 1979, Marilyn Hamilton turned her disability into an opportunity for thousands of athletes who use wheelchairs and play sports. Two ingenious friends made her a lightweight, maneuverable chair out of hang-gliding material. The versatile chair perfectly suited Hamilton’s athletic lifestyle. She knew that increased mobility could benefit others, so the trio of friends founded the Quickie Wheelchair Company in 1980. When Hamilton took up tennis, her company developed a wheelchair for the sport. Hamilton removed a seemingly insurmountable physical barrier and today tennis is one of the fastest-growing wheelchair sports.

And now? In the early 1990’s, Sunrise Medical bought the Quickie Wheelchair Company. Now the chairs are designed by a contract designer, from his home, and are somewhat tested by his many children. Note that none of the family members are physically disabled at all.

Then there is this apparent “Investigative Report” into the chairs … 😉