A blog post for Mental Health Awareness Week from Disabled Students’ Officer, Florence
Actress Elise Bauman recently tweeted this about self-diagnosis:
[Image caption: Tweet from @baumanelise reading “Self-diagnosing yourself on the Internet is highly not recommended just so you know” from May 8th 2018. It has 252 retweets and 2,461 likes.]
Elise’s tweet is likely about that regrettable thing we all do when we have a mystery illness: google our symptoms and have WedMD tell us that our sore stomach means whatever we have is definitely terminal. However, this may also be a criticism of the “self-diagnosing” of disabilities or illnesses by individuals who state their identities outside of medical diagnoses.
For many people the doctor is someone who gets to decide who deserves care and who doesn’t, who’s disabled and who isn’t, who’s really ill and and who’s just “making it up”. There is a strange paradox in the idea where a person is only really ill or disabled once a doctor has declared it, as they must first display diagnosable symptoms before their diagnosis, meaning disability cannot logically “begin” at diagnosis.
How useful is it then to only believe that someone is disabled once they have medical approval?
Doctors do spend years of their life learning about health and the body, but it’s also normal to hear from disabled people that their doctor has googled their symptoms, looked at whatever diagnosis is suggested, and said “yep, that sounds like what you have.” While doctors shouldn’t be expected to know about every illness under the sun, we should also not presume that those of us who are not doctors are completely clueless either, and put trust in what individuals have to say about their own body, symptoms, and experiences.
Even where a doctor may be knowledgeable on a subject, we shouldn’t pretend that that individual and the medical systems as a whole is not influenced by social factors and prejudices. For example, doctors are significantly less likely to believe women’s reports of their own pain than men’s, and black people are much more likely to be sectioned under the mental health act.
In an increasingly privatised NHS, income is also a huge factor in who is allowed diagnosis, leaving individuals with the options of paying hundreds of pounds to go private or sitting in years-long waiting lists, blocking them from accessing vital care or adjustments.
However, the argument for self-diagnosis is not just about allowing access to resources, spaces, solidarity, and organising for those who are marginalised by an oppressive society, but it also concerns restructuring conceptions of disability to put disabled people at the centre. In the UK much of the disabled people’s political movement emerged out of fighting back against decisions about our lives and care being made about us and without us, and against being seen as individual problems rather than a collective of people “disabled” by an un-adaptive society.
Adaptations or adjustments made to an individual’s life are based on an individual, and that individual is always the most knowledgeable about their own circumstances. Therefore, the individual should be centred in all consultation and presumed as the ultimate authority of their circumstances and what would benefit them, even where they may not have technical or medical knowledge about their disability. The main ways that this is undermined are by not centering disabled people’s knowledge and experiences (including those who do not have a diagnosis) and by presuming that disabled people are lying or exaggerating.
The last issue is a massive problem that disabled people face, from not being offered priority seats on public transport to being exposed to increasingly invasive and appalling benefits testing. The idea of those faking disability to “scrounge” benefits has been invented by tabloids and has resulted in real policy and practice that has killed hundreds of disabled people.
If there is one thing we take away from mental health awareness week it should be that disability, in all its forms, is complicated, and that while there is no easy way to solve the problems faced by disabled people living in a disableist society, a good place to start is with centering and amplifying the voice of disabled people, and allowing us to define our disabilities, our lives, and how we live them for ourselves.