This article written around April, 2001.
One of the big problems that people with invisible disabilities have is explaining what it feels like. It's a never-ending battle! Here's an what happened when somebody tried to simulate a visible disability, and how I think the invisible disability of CFS might be simulated.
To Walk, er, Wheel A Mile ...
One of Australia's prime comics and radio personalities spent a day during the paralympics in a wheelchair!
Don't worry, he wasn't hurt. Andrew Denton took up a challenge put to him by Brett Nielsen - one of Australia's paralympian wheelchair basketballers - to spend a morning in a wheelchair and get a taste of what life on wheels was like.
To his credit, Denton did a good job. Live on radio and followed around by TV cameras from one of Australia's prime-time current affairs shows, he went about his daily routine. Confined to a regular hospital-style wheelchair, Denton trouble getting over the curb and into his office for his spot hosting early-morning radio on station MMM. He couldn't get through the door into the men's toilets or, once he made it inside, reach the waist-high urinal (we can only assume he turned the cameras off and cheated, as no wet spot was evident afterwards!). After his shift on radio, Brett Nielsen took Denton on a tour of the city, showing him how to get up escalators in a wheelchair (which Denton declined to try), how to go up and down steep curbs (including an amusing shot of Denton falling out of his wheelchair), and how to ask complete strangers to do your banking because the bank is situated at the top of a flight of stairs.
Denton admitted, at the end of his morning in a wheelchair, that he had learned a lot about life on wheels and how inaccessible our cities really are. It was a wonderful publicity piece for paraplegics and other wheelchair users, and hopefully those who watched and listened to Denton's adventures are now more educated about paraplegia and associated conditions.
Simulating paraplegia is, relatively, easy. You put the person in a wheelchair and don't let them move. This isn't exactly the same as being paraplegic, but it's a good first approximation.
But oh, how glorious it would be if we could give a prominent media personality all the limitations of a severe invisible disability for a day, a week, or an hour.
Here are my suggestions on simulating Chronic Fatigue Syndrome for an afternoon:
The days before the test ...
Create the bone-crushing fatigue with severe sleep deprivation. The subject is forbidden to sleep for three days before the test date. This will accurately reproduce the level of CFS fatigue which is far beyond "just tired".
Provoke the muscle pain by having the subject play a strenuous contact sport, rugby is suggested, and moving heavy furniture in confined spaces on the morning before the test. Also, the subject must balance a heavy weight on their head for half an hour to exacerbate pain in the head and neck area.
The common CFS symptom of hypoglycaemia - low blood sugar - can be induced by not permitting the subject to eat anything on the day of the test.
Immediately before the test ...
Low blood pressure in CFS is caused by low blood volume. This can be induced by having the subject donate a pint of blood approximately 15 minutes before the test. This will create dizziness, lightheadedness and sudden unexpected collapse when standing.
CFS patients feel often as if "gravity has been turned up". Create this sensation by having the subject wear a lead bodysuit, including hood, so that every movement is more difficult and energy-sapping that usual.
Muscle twitching and spasms are difficult to reproduce. An approximation can be achieved by attaching several TENS (elecrical muscle simulation) units to the patient and setting then to trigger at random intervals.
As the test commences ...
Enhance brainfog - the CFS effect of feeling like the brain is wrapped in cotton wool and nonfunctioning - by administering a sedating drug as the test commences.
Open a bottle of extra-strength drain cleaner and have the subject inhale deeply several times as the test commences. This will perfectly reproduce a sore throat and, after a delay of a few minutes, the sinus and nasal congestion that CFS patients are prone to.
Nausea can easily be created by exposing the subject to the fumes of meat which has been kept in a warm place for approximately a week.
During the test ...
Introduce random sharp pains by having one of the test-givers follow the subject around and hit them with a sharp hammer at random locations on their body.
CFS patients are frequently oversensitive to light and sound so play loud music and have the test administered under extra-bright flurescent lights.
Standing still can cause the blood pressure of a CFS patient to drop enough that they grey-out or faint, so the subject is not permitted to stand still during the test, but must be moving around or sitting down at all times.
Lastly, hire half a dozen Highly Respected Experts and the subject's closest relatives and friends to follow the subject around and explain to them that it's really all in their head and that they aren't trying hard enough.
Perfect.
Okay, not quite perfect, but very satisfying to all those millions who live with under-publicized invisible disabilities!
