Epilepsy South Africa aims to provide integrated services that are equitable, accessible, sustainable & people centered with & for people with epilepsy & other disabilities & all affected by epilepsy, to promote social justice. The National Office provides strategic leadership to the organisation to create a society in which people with epilepsy & other disabilities have equal opportunities to function optimally to achieve their fullest potential in all spheres of life.
Pinned 2 days ago
Our wheels, our car, our transportation… should not define us. They should not and do not, yet that great big piece of equipment over time becomes a huge part of our lives gets into our psyche and is often our outer shell society sees. (The mustang was photographed by fellow Brooks student John Purcell in the hills above Santa Barbara, CA.)
The relief my mother must have felt when I reached my 16th birthday and received my drivers’ license. As the eldest of four, I became “Chauffer” to my siblings, “Errand Runner” for my mother and an independent driver to high school. Driver’s saw me as a kid in her folks big white and wood paneled station wagon. The wagon door sported a “Rocky Forge Farm” sign and pictured the sweet face of an Angus bull labeling me “Farm Girl.” At times I moved into the big blue farm truck and the label did not even need a sign. Bits of straw and hay clung to my school uniform and scented me lightly of the barn mixed with dog hair. Late in my college years, my Dad spoiled me with a gift of a manual sparkling blue Mustang Convertible sporting a white top and leather seats: “Doctor’s Daughter.” Oh, that vehicle was fun! Top down, cassette tapes blaring Alison Moyet, I changed that label to “Beach Girl” taking it from Coastal Highway along Ocean City, Maryland to the palm lined seaside road of Cabrillo Blvd. in Santa Barbara. My beloved mustang met its end while parked overnight by a drunken seventeen year-old driver. Eventually I moved on to a bright red Ford Sport Explorer and then the red Jeep Laredo to fulfill my roles as “Career Woman,” “Volunteer” and then “Parent.”
My dad heading into his office, Hagerstown, MD, late 1970s:
Along the way I met, John, “Working Grad Student” with the sun-bleached hair in his 1973 White VW Convertible Bug. This vehicle also met it’s end while stopped at a traffic light by an oblivious LA driver. He moved on to my Dad’s old red Lebaron convertible. The wheels most suited to John were and remain his Rollerblades. I spent weekends trying to keep up along the beachside bike path from Venice all the way Will Rogers Beach and later along DCs Pennsylvania Avenue.
When Riley reached his second year without demonstrating any ability to stand or walk on his own, Physical Therapist Kiersten announce her intention to fit him for a wheelchair. We could not hold him every moment of his life; we had to face the reality that Riley would need his own wheels. These wheels would indeed label our child, “Disabled.” Along came Miss Betsy with Custom Mobility’s Scott in tow. Well, if you’ve got to be in a wheelchair it may as well be fun. And fun it was, it was just after the Fourth of July in 2004 and Scott got hold of a precious flag frame. There would be no ignoring Riley’s chair.
From his first ride in my wheels, the Jeep (affectionately known as “Rocket), Riley objected. He did not care for car motion. Over time he adjusted but this past year he again felt the need to express his great displeasure and discomfort in that Jeep. The very special and luxurious Traveler’s car seat no longer aided him in sitting up properly enough to breathe well and his legs bumped into the seat ahead of him. There were many tears and stops for every trip. It had to go. It was time to accept that we really needed an accessible van, John writes more about this in Devastation. John has modified the look of his new van to suit The Shark Tooth Guy:
No, my wheels should not define me. Over the past few years I have been trying very hard to not view myself simply as “Special Needs Mom.” These new… well new to me 1997 Wheels are not helping this. With every entry into this van I cringe just a little as I smell the faint exhaust and hear the roar of the engine. Peering into my rear view mirror I see past Riley’s head to Ronan’s car seat leaning at a 75 degree angle on the back bench jouncing mightily with each flaw in the road we meet. I turn to see Riley safely in his own wheelchair, now the Green Monster, locked in securely by the EZ Lock. I am so grateful for this new accessible van. It is the right vehicle for us, for Riley.