ME/CFS AUSTRALIA (SA) INC
Registered Charity 698
PO Box 28,
South Australia 5007
North Terrace House,
19 North Terrace,
Hackney, SA, 5069
1300 128 339
Closed over Christmas
(reopened 1 February 2017)
ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS Australia (SA) Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
"Passing" Is Not A Privilege
Thursday 8 January 2015
Passing" is not a privilege
Having an invisible disability can mean you're able to choose whether or not to disclose your disability status. But being able to "pass" as a non-disabled person can also mean your access needs are often ignored completely, writes Naomi Chainey.
A few weeks ago I attended a public panel discussion; a cosy affair in a trendy pub where people with disabilities spoke frankly about the accessibility and intersectionality of different rights movements. The discussion was thought-provoking, the panellists witty and engaging, and I felt the night was, overall, a great success.
Despite this, I did not enjoy the occasion as much as I might have, because I spent most of it reeling from some unfortunate terminology used early on, when a panellist made reference to "passing privilege", apparently enjoyed by people with invisible disabilities, allowing greater access to spaces, lovers and parenthood.
I'm not sure I can adequately express how very absurd this sounds to someone who lives the experience of invisible disability day to day, but I'd like to take a stab at it.
I'll start by saying that there is no measure that links severity of unmet access needs to visibility.
I certainly don't wish to downplay access barriers faced by people with visible disabilities. Professionally I spend a lot of time drawing attention to them, for good reason. I do wish to point out, though, that not all people with visible disabilities share the same access needs, and not all barriers to access are easily identified by sight.
In my own case, as a person with Myalgic Encephalomyelitis (ME/CFS) and Multiple Chemical Sensitivity (MCS), the vast majority of housing, employment, leisure, travel and academic options remain largely inaccessible to me in ways that would surprise most people, because I have the appearance of a young, able-bodied woman.
For me, physically demanding activities, even extended periods of standing, must be avoided if my condition is to remain stable. Full time anything is completely out of the question due to fatigue. Loud, bright or busy environments are difficult to handle, causing sensory overload. Prolonged exposure to widespread chemical compounds can trigger bouts of debilitating illness, preventing me from spending more than a few hours at a time in the majority of homes, workplaces and travel accommodation.
I recently visited my grandparents in New Zealand and spent a week camped out on their lawn, because their perfectly lovely home, like most homes, was not a safe place for me to sleep.
With regard to lovers, they tend not to gravitate toward those with no energy to spare on sex and romance (it tends to be misinterpreted as disinterest). And parenthood? I struggle enough to take care of myself, physically and financially, and there are no adequate supports available to assist me in child rearing. It's not something I will ever choose.
Invisible access needs are complex, and unlike more visible concerns such as wheelchair access, remain largely unaddressed at government level. For example, no accessible housing is required to meet the needs of people with MCS, despite a growing awareness of MCS related homelessness. It's simply not on the agenda. The desire to have an invisible access need met is generally perceived as laziness, attention seeking or an obsessive disorder rather than genuine need, and then dismissed.
I once had a housemate who pretended not to hear me when I tried to discuss how her malfunctioning washing machine was destroying my health. The machine no longer did the rinse cycle, and she refused to have it fixed, so I became terribly ill from the soap chemicals pervading the apartment. Eventually I demanded she leave, but not before I had to give up my job. Recovery took seven months, during which I barely had money for groceries and hardly left the house.
And now to the "passing" issue.
It's entirely true that the appearance of being able-bodied protects us from discrimination and scrutiny associated with visible difference. We largely avoid the condescension, pity and infantilisation reserved for people with visible disabilities. Our personal space is not assumed to be public property, and we are not stared at by strangers.
If you face this every day, I don't envy you. I don't imagine it's pleasant. I know the psychological impact can be very harsh.
That being said, high rates of depression and suicide among people with invisible disabilities seem to indicate that something equally insidious is happening on the flip side.
What needs to be understood is that people, consciously or not, use visual cues to decide how much empathy a person with a disability is entitled to, and the value of culturally normalised empathy should not be underestimated, as it impacts upon every relationship you have.
In my experience, access to appropriate services can decrease dramatically, regardless of impairment, if the gatekeepers perceive you as able-bodied. Manners turn brusque and exasperated, and you are made to feel that your desire to function in the world is a big waste of everyone else's time and tax dollars.
In some situations, people with invisible disabilities find themselves forcibly removed from their homes and isolated in psychiatric wards for extended periods, because their inability to meet expectations of 'able-bodiedness' is perceived as self harm, and carers are accused of enabling it. In the case of Sophia Mirza, her family believe that her two-week sectioning in 2003 caused a worsening of her ME/CFS, ultimately resulting in her early death in 2005. Current cases include ME/CFS patient Karina Hansen, held against her will in the Hammel Neurocenter in Denmark, and Boston teenager Justina Pelletier, whose diagnosis of a mitochondrial disorder has been under dispute for over a year. Both have families desperately trying to get them out of state care before their conditions deteriorate permanently.
On a more personal level, many people with invisible disabilities find that friends and family become irritated when miraculous recovery is not forthcoming within a certain timeframe. The lack of a cultural paradigm through which ongoing conditions and invisible symptoms can be understood places enormous strain on relationships. Disbelief is prevalent and demoralising.
When you are vulnerable, dependent on others for care, and support is being withheld on community and personal levels, the lack of it is felt in every corner of your life. It is brutal, isolating and oppressive.
Suicide rates for people with Fibromyalgia are more than ten times that of the general population. For Lupus it's five times. One study on recorded ME/CFS deaths found 21% of subjects had ended their own lives. Suicide is recognised as a serious risk for people with a wide range of invisible conditions, and lack of public understanding is acknowledged as a prominent contributing factor.
For many people with disabilities the disability community is a refuge from the lack of understanding faced in the general community. It's a safe, accepting, supportive space. But for people with invisible disabilities, this is not necessarily the case, as we tend to be viewed as allies rather than card-holding members. The disability rights movement is rarely concerned with our access barriers or the discrimination we face. We can go to disability events and hear our exclusion justified with words about "privilege".
"Passing" is not a privilege, as it ultimately means that we are accepted nowhere. In practice, passing is just another typeof disadvantage. One that needs far more attention in public conversations about disability.
Naomi Chainey is a feminist, atheist, disability rights activist and community media producer. She is currently facilitating Chair Chat, a media training program for people with disabilities airing on community television.
The above, with comments, originally appeared here.
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