Safety at Risk isn’t Access
For me, flying evokes more stress than does a visit to the Emergency Room. I am forced to interact with people who assume they know what I need, ignore my concerns, damage or lose my equipment, and try to talk with my traveling companions instead of me. My health and safety are put at great risk, and my care needs are put on display to dozens of strangers who then pity, fear, and/or resent me.
I’ve flown 6 round trip flights between June 1981 and March 2000 – SJO-BOS, SFO-IAD x2, SFO-IAH, SFO-DTW, and OAK-ATL. My chair has been damaged twice, I’ve sprained my ankle once when boarding, was once bumped to a red-eye flight because the boarding crew didn’t know what to do with me, and at Dulles my wheelchair was lost for 2 hours while I waited to deboard with 7 other wheelchair users. My last flight was in March 2000, on which I spilled into the lap of the person to my right because of inadequate seating support.
I no longer fly because I’m too fragile to be transferred from my wheelchair and carried down an aisle to an airplane seat. I’ve never been able to use an aisle chair because contractures in my knees are too severe, I’m too small (58 lbs), and there’s no support for my head and arms which are very floppy due to muscle atrophy and severe scoliosis. During a transfer I cannot be separated from my ventilator for more than 3 or 4 minutes; am at risk of choking during re-positioning, so need ready access to a suction machine; and then need to sit on a custom 8″ high, bi-level cushion, have a seat-belt and chest strap, and have custom head support behind me and to my left. Then I must be reconnected to my IV pump and catheter drainage bag.
In the normal course of a day, after I’m in my wheelchair, I am able to feed myself, drive my wheelchair, operate my computer and telephone, go to work as a trainer/advocate across the northern half of the county, and come home to running a household with my partner of 15 years. Out of my wheelchair on an airplane, I am cruelly incapacitated and unnecessarily rendered medically fragile.
Until airlines are required to allow me to stay in my custom wheelchair, I cannot fly and will continue to miss weddings, funerals, paid speaking engagements, and work conferences; and my vacations can only be road trips.Alana Theriault, CA