"Not Disabled Enough"

Understanding, embracing, rejecting: Women's negotiations of
disability constructions and categorizations after becoming chronically ill.

Soc Sci Med. 2008 Aug 28. [Epub ahead of print]

Crooks VA, Chouinard V, Wilton RD.

Department of Geography, Simon Fraser University, RCB 7123, 8888
University Drive, Burnaby, British Columbia, Canada V5A 1S6.

PMID: 18760870


The purpose of this article is to elucidate the various responses
women have to being, or not being, categorized as disabled within
specific spheres (e.g., medical, state) or places (e.g., doctor's
office, work) after developing a contested chronic illness.

Drawing on interviews conducted with 55 women living with
fibromyalgia syndrome in Ontario, Canada, we examine how they come to
understand various constructions of disability and whether or not
they reflect their sense of self, and how and why they either embrace
or reject external categorizations of themselves as disabled by the
state or medical professionals.

In doing so we contribute to the limited geographic literature which
stresses the importance of spatiality and ways of being in place to
ill and impaired persons' negotiations of the self and relationships
with others. We find that negotiating disability was, for many, an
emotionally charged and complex process, drawing on one or more
strategies: reluctantly employing some meanings associated with
'being disabled' to achieve material ends, creating an understanding
of disability that is most in keeping with one's sense of self,
embracing other meanings to the extent that they offer a legitimate
basis for identity, and/or rejecting disability in the interests of
sustaining an existing identity.

For those women in need of forms of state assistance such as income
support and health care, state institutions exert powerful pressures
to come to terms with what disability means in one's life -
particularly as medical and state authorities classify people as
'disabled enough' or 'not disabled enough' for entitlement to state resources.

* * *

And, unfortunately, the reality for many people with an invisible illness is that no matter how severe your actual disability, the simple fact that you look healthy will get you categorized as "not disabled enough".

Taken strictly on the numbers, how many hours I can work without starting to make the sort of mistakes that will get me fired, my condition far exceeds the minimum to be entitled to disability benefits.  But the judge continually makes "findings on the record" that "you look healthy", in order to discount the medical and VocRehab expertise that says I can't work.

I am not missing a limb, I don't use a wheelchair, I am not confined to bed with monitors attached (all things which would give me an automatic presumption of disability, even though we all know people missing limbs or in wheelchairs who are able to work full-time).  Therefore, regardless of what the law says is the definition of "disabled", because my disability is invisible, it's an uphill battle.

My lawyer mentioned a woman who is applying for disability benefits because of obesity.  Even though it's likely that most people who weigh that much bear some responsibility for putting 10,000 calories a day in their mouth, and most of them could easily remedy the situation with a strict diet or gastric bypass surgery, it appears that this woman was going to get benefits much easier than I would, simply by declaring that her weight prevented her from leaving the house to come to a hearing with the judge.  Whereas when I say that my disability often prevents me leaving the house -- at one point, I was fainting on a daily basis, which made it unsafe to cross the busy street so I could take the bus to go somewhere, and made it illegal for me to drive -- the judge simply says "you look healthy enough to me" and denies my claim. 

Her condition is most likely curable, mine is not.  But he can see for himself that she is too large for a normal chair to support her weight, and therefore, regardless of whether her condition is self-inflicted, she's going to get her benefits.  My invisible disability is not caused by any lifestyle choice -- it's caused by a virus that has felled athletes and strict vegetarians along with those who had bad health habits -- but because it's invisible, I'M the one who's considered to be defrauding the system.  There's no diet or surgery that can fix what's wrong with me, but that doesn't matter: I look healthy, therefore I must be healthy.

Unfortunately, because I have chronic digestive problems caused by dysregulation of my central nervous system, I can't eat my way up to 500 pounds -- the food doesn't stay put long enough to digest -- so I can't get my benefits the way she did.  Even at my top weight, I was only 40 pounds above "normal" for my height, a long way away from where I need to be to claim Morbid Obesity.