Organized by: Margaret Jorgensen
Imagine wearing one pair of shoes for years. They wear out, but you cannot afford another pair that fits and have to settle for something that's clumsy and only comes close to being useful and comfortable. That's the case with some manual wheelchair users who cannot afford the latest lightweight technology. I'm one of those people. Because I have degenerative joint disease and rheumatoid arthritis, I have had to use a wheelchair for mobility for the past 13 years. I am a "non-functional" walker, something I have never imagined becoming. That hasn't stopped me from being active. I work two part-time jobs, drive, do housework (you should see me go with a broom or mop, etc.). I also do advocacy -disability education as an ensemble member of the Disability Project, a theater group based out of St. Louis. I'm not the typical manual wheelchair user-I'm determined, disciplined and not willing to slow down any time soon. The wheelchair I'm using now and those that I have used, however, can't keep up. That's why a titanium or premium ultralight chair configured to my body size and needs is not a luxury or a whim. It is a necessity. Let's start with daily life. I live in an apartment complex, but instead of rolling 50 to 75 feet over level, non-elevated sidewalks to my unit, I have to go 355 feet. That includes two grades (one moderate, one gentle). There are days when my fatigue level is such that I have to "backpeddle" my way up those grades. Most days, I make two and sometimes three or four trips down that route. You may wonder why I don't use a power wheelchair or scooter for that need. The answers are simple-I want to maintain my muscle mass, fitness and keep my weight down, things you can't do in a power chair. I cannot transport a power chair in my car, I have a special rooftop lift that stows my chair. It only handles manual chairs and I do not want the added expense of an adaptive van right now. I like my small car for a lot of reasons and don't want to change. You don't have to worry about a battery going dead on a manual chair. If you are tired, you just take a break, then get going. Repairs are relatively inexpensive with a manual chair vs. a power chair. You are wondering why I can't finance this type of chair on my own. I can answer that. Since I work only part-time jobs because of my disability, I have no private health insurance. I cannot afford health insurance and qualify for expanded Medicaid which my state will not fund. I could go to my bank and ask for a loan, but I have already taken out a loan for major auto repairs and the loan officers are skittish about adding any more to that current loan amount. Organizations in my area cannot afford to buy the type of chair I need. That's why crowd-funding is a last resort for me to get this type of equipment. Now for the practicality. A titanium wheelchair weighs between eight and 15 pounds; a premium ultralight weighs as much as 17 to 20 pounds. Why is that important? Remember the distance and challenges I face getting to my apartment unit? Now add my body weight (I'm 5-8 3/4 and weigh 190 pounds), a typical chair weight (the one I use weighs 30 pounds) and you get the picture. An ultralight not only makes me more efficient, but cuts down on stress and fatigue. Y ou are probably questioning the amount I'm requesting. If I reach my goal, I plan to go to an online retailer (Spinlife) to buy my chair. Why not use a local provider? Price. The chair I want will cost about double what I'm asking for with this fundraiser. Online retailers like Spinlife deal in volume, they can offer big discounts (30 to 40 percent). Plus I dealt with this business before when I had to buy supplies. The downside is that I have to provide accurate measurements and also have to have someone make minor adjustments after the chair arrives at my apartment. Those are small issues when it comes to greater freedom and accessibility. I have configured ultralights and one titanium chair on the Spinlife site. The cost of my "dream" manual chair will be covered by the amount. Money left over, if any, would be used for maintenance and cleaning. Finally, why do I need another wheelchair? The ultralight will be my everyday wheelchair, replacing the 30 pound rig I use now. I won't throw away the heavier chair-I'll use it as a spare when the ultralight needs maintenance and cleaning.