The Neurology Department’s referrals offered a refreshing change of pace from the endless stream of spinal cord injuries that wheeled through my office. A client who could actually walk and appeared non-handicapped on the surface at least made a good first impression. Getting through the front door is the first step toward working.
Ed was six feet tall, nice looking, polite to a fault, was a recent high school graduate, and wanted to work in the worst way. On the surface this was a piece of cake. Ed always made it through the front door.
Neurology had seen Ed on several occasions, was thoroughly familiar with his impairments, and had achieved what they believed was the best control of his assorted seizures. His grand mal seizures were mostly controlled, but his petit mal seizures were something else. On arriving in my office his appearance and presentation were impeccable.
Through three or four get-acquainted sessions Ed’s predominant seizure pattern became clear. His seizures were short periods of absence which lasted between five and ten seconds. If one was unaware of the problem it might be missed as though the person were deep in thought. If Ed was seated during a seizure any normal movement stopped, his face went slack, his eyes went to half-mast with a barely perceptible flickering motion, and a slight tremor was apparent through the jaw. On awakening he usually said “I’m sorry”, as though he had suddenly awakened from a short nap.
When walking the seizure caused him to stop in his tracks, and the usual facial involvement appeared. On one occasion we were walking along a hospital corridor with a cup of coffee. He did not spill the coffee during the seizure, but maintained the coffee cup on a saucer upright. After a few seconds the usual “I’m sorry” was offered.
Of relevance to working is how often the seizures occurred, and what, if anything, acts as a trigger. During our meetings two were almost seizure free. Unless Ed’s every moment was monitored, it was possible for him to have a seizure and not notice it. His “I’m sorry” responses were not automatic, just customary if he believed somebody was watching. During one information gathering session, the conversation focused on Ed’s relationship with his father. This period was interrupted by seizures 25-30 times, a frequency that would make him unemployable under most any circumstances.
The best Ed could manage for transportation was his parents, or the bicycle he had grown up with. The parents worked, so the bicycle, or walking, was the reliable back-up system. Ed was death on a bicycle, as he was unable to maintain his balance during a seizure. A three wheel bicycle might have taken care of his seizures, except for the travel during the 5-10 seconds. Automatic brakes when free-wheeling might have moderated this problem, but might equally have thrown him forward onto the handlebars during the seizure.
Because of Ed’s great appearance and manner, he was able to talk his way into most entry-level and low skill jobs, and he was bright enough to avoid those that were inappropriate. On walking through downtown Columbia when he would see a help wanted sign he would go in, ask about the job, and on one occasion was hired and fired on the same day. Both results were readily explained.
Ed was reluctant to discuss his seizure problem with prospective employers. His experience was not being hired if he did so. He figured it was better to show his ability to do the work for a short time than not to have an opportunity at all. Most employers on hearing the word epilepsy shut the door immediately. Ed had two kinds, one present every day, and the second lurking seriously in background.
The other side of this argument is a reasonable discussion in advance, and the development of an understanding (sympathetic) employer relationship on an appropriate job. We never quite arrived at that point. One job issue at the time was worker’s compensation, the job related group accident, as well as health insurance. While excellent information was available which explained that hiring handicapped individuals would not cause group insurance premiums to rise, the mere discussion was often enough to seal the outcome in advance.
Considerable research evidence at the time was available which showed that appropriately employed handicapped workers were safer on the job than non-handicapped workers. Virtually all work-related job injuries occur to non-handicapped persons. Handicaps are most often what follow work-related injuries, not the other way around. Go figure! While this rational discussion makes sense, entering a seizure disorder into the mix is often, unfortunately, a fatal ingredient.
What a nice kid!! Helping Ed develop a marketable skill would probably have gone a long way in overcoming employer resistance, but we didn’t get to that point.