A friend of mine lives with a medical condition that causes debilitating pain, exhaustion and illness. She's registered as disabled but the invisible nature of her illness suggests to some that she isn't *really* disabled at all. I've seen her subjected to hostility and verbal abuse when, for example, after legitimately parking her car in a disabled spot, the absence of any visible signs of disability (a wheelchair, perhaps, or at least a pair of crutches) causes the self-appointed disability police to question her right to be there. Of course the majority don't say anything outright but it's there in *the look;* when someone starts to resemble a human owl as they attempt to rotate their head 360 degrees to have a good old gawp. I've watched people pass by, only to double back in order to check that her blue badge is "legit." Once they see that it is, the inference of those tuts and eye rolls is clear; "you're not really disabled" or "you're not disabled enough to qualify." It's funny how this kind of thinking transforms something that many of us take for granted (mobility, independence) into a privilege that seemingly needs to be justified. It's not a huge leap from this to seeing the few adaptations society makes for those with disabilities as advantages or evidence of special treatment. Which is important because in order to qualify for special treatment you need to prove you've 'earned' it.
I'm not suggesting it's always straightforward to evidence the impact of visible disability, particularly in the current political climate, but when you consider that signs indicating "disability" tend to depict a wheelchair user, I suspect this visual shorthand reflects our cultural understanding of what disability looks like, with implications for disabilities or illnesses which don't fit the expected or recognised pattern.
Changes in human rights legislation (and to an extent, shifting public opinion) have ensured it's unlawful to openly discriminate against disabled people but when it comes to public perceptions, it seems that some are seen as more disabled than others. It'd be crass to suggest that people with visible disabilities aren't discriminated against, harassed or abused; they are. However, a physically disabled colleague of mine made an interesting point; she said that unlike some, she doesn't have the option to "hide" her disability. To borrow her exact words, she can't pass as able bodied "because my disability is right there in peoples' faces." This is true and has a range of implications in itself but it also raises the (implied) suggestion that those with invisible disabilities are somehow more able to choose whether they're seen as disabled or not. I wonder whether this sort of thinking is one reason why people with invisible disabilities are often portrayed as malingerers; the suspicion being that they either have control over their symptoms or that they're entirely fabricated for the purpose of playing the system. There is political capital to be gained by the notion that 'undeserving' people are somehow getting something for nothing at the taxpayer's expense; a position that's aided and abetted when newspapers gleefully report on stories of fraudulent benefit claims. Yet the idea of control over symptoms is reminiscent of "pull yourself together," "think yourself better" or "a positive attitude beats cancer!" The point is not that a person with an invisible illness is able to choose whether they're disabled on a Monday then be able bodied by Thursday, the illness or disability is always there, it's just not immediately apparent to others. As though only validation by the gaze of others can make it real. In a sense, yes, someone might potentially "pass" as able bodied but by framing it in terms which imply a person can control the extent of their illness speaks volumes as it suggests the possibility of fraud and introduces the language of suspected dishonesty.
In a system where evidence of disability is required in order to access particular services or claim benefits, this has significant consequences. The burden of proof is considerable in certain invisible disabilities. There are some which are medically validated; cancer and heart disease immediately spring to mind, but demonstrating the impact of some other conditions can be more difficult. A diagnosis may not in itself sufficient in some cases, such is the variable nature of certain conditions. Some people with severe arthritis, for example, may be able to work despite considerable pain whereas others may be bedridden. The "think yourself well" brigade would have us believe that the difference is purely psychological and that people who are severely incapacitated need Cognitive Behavioural Therapy (CBT) to address their unhelpful illness beliefs. My personal belief is that therapy can be helpful in dealing with the consequences of debilitating illness but it doesn't in itself stop pain or restricted mobility.
Furthermore, there are conditions where both cause and treatments are contested and where the absence of cast iron biological evidence has led to a desire to classify them as psychiatric, rather than physical, illnesses. Many people living with ME / CFS are fighting against the condition being classified as psychological in origin; equivocal scientific evidence has led to some (including a number of high profile psychiatrists) arguing that the condition should be seen as predominantly psychological with physical expression. This has been strongly refuted by many, who point to the sheer variety of debilitating physical symptoms (leading, in some cases, to death) and reporting that any depressive component is secondary. After all, they say, who wouldn't feel depressed living with chronic pain and illness as well as being told they're "not actually ill?" A number of people argue that that the suggested (psychological) interventions of CBT and graded exercise therapy (GET) are frequently counterproductive and tend to make the symptoms worse. Having not researched this area specifically I can't make particularly informed comments about the evidence for either perspective but in terms of my ideas about invisible disability, I do think the evident need for validation that it's a "real" physical illness, or perhaps a group of illnesses, raises interesting questions about other forms of invisible disability, mental illness. Are they somehow "less real?" Are people angered by the potential misclassifications because a psychiatric diagnosis doesn't match their experiences of physical symptoms or because a physical illness or disability seems somehow "more legitimate?" (Less of the suspicion it may be "all in your head?") My personal belief is that away from the science, there is probably something else going on. Just because we don't know exactly what causes something and there isn't a cast iron diagnostic test doesn't make an illness less real. It's worth remembering that until relatively recently, MS was also seen as living on the border between the physical and psychological but the pendulum has latterly swung in favour of the biological. I think many people living with ME/CFS are hoping the same will be found to be true of their condition. The absence of biological markers in psychiatry hasn't made variations in mental health any less "real" but classifying an illness as psychiatric does have profound implications for peoples' treatment options, the resources devoted to it and public perceptions of those living with various conditions. The ambiguity of certain conditions challenges the authority of doctors as "experts" and in the absence of concrete answers, it's tempting to offer CBT in an attempt to reframe the illness and when this fails, to blame the patient for their inability to "think themselves well." Interesting. There will be more to come on this, I think....
