Saturday, September 13, 2008

Disability: Is it a Free Ride?

Janet Murray published an interview with Sue Collins, a woman disabled by Sjorgen's syndrome and fibromyalgia (FM), on July 8, 2008.
http://tinyurl.com/593qeh
 
At first glance, her glaring reference to blaming her illness on being stressed raises the hairs on the back of the readers' neck.  Collins shares, "Looking back, I should have seen it coming. I had a stressful job working in the planning department of my local council. I was constantly running around. I woke up one morning unable to get out of bed."
 
The truth is that everyone runs the rat race and is stressed.  We are all constantly behind and running around.  The key is that everyone does not develop fibromyalgia as a result.  People tire and they recuperate after they rest.  Fibromyalgia is different as rest provided no recuperation.  Something else causes fibromyalgia.  Researchers have identified both viral infections and toxic chemical injury as possible factors. 
 
Stress is not to blame, but that's not to say that stress cannot worsen an already existing medical condition.  Once a person becomes ill, stress often occurs as a result of financial worries, being unsure of what the future holds, and lack of support from friends and family who may not understand the gravity of an illness they cannot visible see outward signs of. 
 
Collin's experience is a good example of how community (peers, friends, family, church, etc.) often abandon victims of invisible illnesses and how such abandonment and disbelief serves only to worsen the illness through denial of assistance, accommodations, and needed emotional support.
 
It is unfortunate that many otherwise well-meaning people will advice family and friends to avoid "enabling" someone with an invisible illness, a misnomer of disbelief that the disabled person is really ill.  The concept of waiting for someone to "hit rock bottom" in the hopes they will "wake up" and stop "seeking attention" only serves to hurt and punish an innocent victim of illness.  The reality is that the suffering worsens the illness and rock bottom is deadly; it's hardly a wake up call. 
 
Murray's interview goes beyond the stigma of Collin's invisible illnesses.  Murray also describes what happened when Collin's was believed, accommodated, and treated respectfully.  Collin's blossomed and was able to return to school and eventually work part-time.
 
When Collin's went to the new college, she said "The college has been supportive about my condition and I received a disability allowance to help with books and equipment".  In summary, she was given love, support, and companionship.  And now she's much better and back to work as a result of her disability being taken seriously.  She was given the help she needed to address her condition and work around it by doing what she could despite her disability instead of trying to pretend it does not exist. 
 
This is a rare occurrence with a wonderful outcome!  People with invisible disabilities need other around them for emotional support that truly believe, accommodate, and allow them to address and cope with their condition while still living life to full capacity and building confidence in the abilities they do have, even if it means limiting work to two days a week instead of full time.

The stress from invisible disabilities comes in the form of stigma, oppression, and marginalization, along with the need to fight for regularly denied accommodations and regular belittlement and insinuation from others that the individual is malingering or it's "all in the head".  Fighting for accommodations alone can be a full time job.  This stress is the difference between a disabled person being able to go to school and then working two days a week as Collins did or not working at all. 

Our time to believe others and accept them as they are is entirely free.  After enrolling in the new college, Collins says, "My health isn't brilliant. I still wake every day not knowing how I will feel. It's difficult to plan anything, but my confidence is growing. At last, I feel like I belong."
 
The human psyche is fascinating.  While well-meaning, we often use the wrong techniques that "blame the victim".  Comments like "why doesn't she just get a job" or "she just wants a free ride" are frequent and only serve to exacerbate the situation.  Belief, accommodation, and acceptance of limitations does the opposite.  They return people, including Collin's, to the workforce.
 
Love and belief are powerful beyond measure! 
 
Reference
Murray, J (2008, July 8). Back to school: A painful experience saw Sue Collins change the course of her life. The Guardian, from
http://tinyurl.com/5lqxsq
 
Note: This article appeared in the MCS America News, August 2008, Volume 3, Issue 8
 
Copyrighted © 2008  MCS America

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