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PODCASTS AND SOCIAL media are the new street corners and university campuses for identity politics and debate.
Aoife Dooley, the scribe behind the brilliant YourOneNikita account on Twitter, recently shared a refreshing new take on the terminology surrounding autism – she herself has a diagnosis of autism.
Says Dooley:
In the autism community, many self-advocates and their allies prefer terminology such as ‘autistic,’ ‘autistic person,’ or ‘autistic individual’ because we understand autism as an inherent part of an individual’s identity.
But often parents of autistic people prefer terminology such as ‘person with autism,’ because they do not consider autism to be part of an individual’s identity says Dooley.
They want ‘person-first language,’ that puts the person before any identifier, such as ‘autism’ – in order to emphasise the humanity of their children.
Parents, friends and physicians may avoid labels for fear of stifling or impeding their loved one while others will ignorantly dehumanise with inappropriate terms.
So often both allies and antagonists believe they know best how to reference others.
Despite the move toward ‘person-first language’, what is missing frequently from this conversation, is the person at the centre of the exchange; how would they like to be acknowledged?
In the IT Galz Podcast (episode 63) Jenny Claffey and Lindsay Hamilton took a conscientious decision to no longer define themselves as ‘feminists’.
They argued that although we are often reminded that the dictionary definition of a feminist is someone who believes in the social equality of the sexes – words are not always their dictionary definition.
Words have a cultural context, as do labels. The language of the streets, the lab and the university lecture hall often do not marry. Labels may be imbued with baggage.
When we are children, labels serve as a natural way of learning about our environment. As we grow older we begin to learn what labels belong to us.
Inevitably, some of the labels or identities thrust upon us we embrace and others we reject. Soon, we begin to self-advocate for the labels that suit us best.
I am disabled. Unlike Aoife Dooley, I do not see my disability as an inherent part of my external identity but my disability is fundamental to my experience.
My disability has been denied by the education system, medical professionals, the government as well as my own friends. My experience has been silenced, so for me, to claim the label ‘disabled’ serves to validate an experience that so many others have invalidated.
This means that I am asked to compete at the same level as my peers despite having a significant impairment.
I claim the term ‘disabled’ because the word gives visibility to a part of me that is not always visible to others.
Of course, many disabled persons (or persons with a disability) express the opposite views. ‘Look past my disability,’ they say.
Sinéad Burke, educator and advocate, told Alison Spittle in conversation in 2016 (on the latter’s podcast show) that she is disabled and a feminist and that those are two labels that she wears proudly.
Sinéad questions why it is that disability is a label that we are often reluctant to use; does it imply that disabled people, or people with a disability, are somehow lesser than their able-bodied peers?
Yet clearly not all disabled persons see disability in the same light.
Therefore, while two members of the same community may take opposing views on how they are labelled and the baggage they attach to these labels; their reasons are likely to be equally valid and edifying.
The question is not what terminology we feel best fits others, even when it comes from a place of well-meaning and kindness, but validating the experience of others by using the language they feel befits them.
Identity politics can be tiresome. Bret Easton Ellis may roll his eyes at yet another millennial taking issue over which order we put the words in.
Exasperated readers may well ask – why can we not ‘just be’?
Yet it appears to me that the individuals self-advocating, often fighting, to claim their label are the same individuals who have been denied by others, a part of their identity and their experience.
When eventually we are acknowledged – then we can ‘just be’.
Brigid O’Dea is a writer and journalist with a special interest in invisible disabilities.
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Well balanced and non judgemental article.. if only everyone could think and act that way…
What we need is a Whole System that works,
It’s time to drain the sespool of leaders and show them with your VOTES , who are the real bosses , they work for us ,NOT the other way around
@Karllye kripton: the politicians don’t decide what drugs get approved, to do so would drive healthcare to a dystopian system to be decided by public opinion rather than expert medical professionals, so I’m unsure how votes would achieve your desired effect
@Karllye kripton: that’ll make a huge difference .. not .. you cant vote out any of the leaders in THE HSE .. they are employees if the state …
@Vocal Outrage: Unfortunately this isn’t true. Look at Orkambi. Deemed to be not cost effective by the NCPE. Recommended not for reimbursement. Simon Harris decides to fund it. Despite this money coming at the expense of various other cost effective treatments. I wish the general public were fully aware of what a self serving decision this was, and how much it has cost the HSE, for a very marginal benefit, when you look at the overall CF population. But it looks good in the press.
@Peter Wheen: my point exactly, when you make populist medical policy decisions like that, against professional advice, then other parts of the service will suffer. I guess I was referring to how it should be
My mum was seen by many consultants in a private hospital in Dublin for pains that eventually had her bed ridden. After 4 months of various tests and different pain killers she took very ill and rushed to hospital. A simple CT scan not done previuosly by any consultant showed she was riddled with cancer and died the next day. My trust in private hospitals was questioned from that day onwards..
I remember my granfather saying he was on 9 pills a day in his late 70s. Now a day most fit 30 year olds are putting 4 tablets into themselves
Something is definitely wrong if half a million people are on anti depressiants. It’s all a scam
@Tom Padraig: Perhaps rather than blaming the medication, you should consider the circumstances that lead to people requiring antidepressants as opposed to labelling it all a scam.
@Philip Kavanagh: He is not wrong. One example would be the number of teens on Meds to treat their “ADHD” because they once told mummy to fork orf after eating a bag of skittles and downing five cans of red bull.
@Philip Kavanagh: As evidenced by the experience of those involved in the Air Corps chemical scandal, many if not most people on ADs do not need them. However they are the current quick “fix” for clinicians and a very lucrative one for industry.
The overprescription of ADs is a scourge & a scandal. The increase in anxiety & depression is being driven by what we eat, what we drink and what we breath.
ADs are one of the current unsustainable answers to an already unsustainable problem, counselling is the other.
Treating depression & anxiety along with so called suicide prevention is a fooking industry at this point.
@Ronan Sexton: He is wrong. Some people need antidepressants for a specific period, others will be on them for life. Like for most illnesses, medication is only one of the range of treatments. To write it all of as a scam is dangerous and stupid.
@Chemical Brothers: Back up your unsubstantiated claim with actual sources that “many if not most people on ADs do not need them”.
@Philip Kavanagh: The numbers on antidepressants in Ireland is simply staggering. To believe that all these people actually have mental health illnesses is simply beyond belief.
We are mass medicating a massive portion of our population out of ignorance.
I suppose the matter of not wasting billions on whats planned to be a multi tier health system for our kids in the supposed “best new hospital in the world (if you are wealthy and can afford expensive health insurance)”, would allow us buy a couple of billions more worth of drugs.
Can I ask if Dr. O’Connor believes, like a recently published Cork based gastroenterologist, that IBS is a psychosomatic illness?
“More than 50 per cent of my outpatients have symptoms caused by psychosomatic conditions, such as irritable bowel syndrome, which cannot be elucidated or cured by the molecular biologists”
@Chemical Brothers: wow, a little off topic, no?
@James Brady: Not really IBS and the like is overwhelming Gastroenterology Depts in all our hospitals. If all Gastroenterologists think IBS is psychosomatic then the problem is not being dealt with properly and is a further drain on the same pot of resources.
It stands to reason that if spending on expensive drugs means less money for other hospital spending then if something else is using up funds like for huge numbers of unnecessary “arse covering” endoscopy that then further eats into the same pool of money.
@Chemical Brothers: It’s not unnecessary. It is necessary to investigate or you can’t say with confidence that pt has IBS as opposed to something more serious. IBS is a diagnosis of exclusion. If gastroenterologist is arranging endoscopy to investigate, they are likely looking to rule out conditions with overlapping presentations such as coeliac, crohns, ulcerative colitis. When all investigations are negative and the symptoms are still of concern, it is not unreasonable to attempt treatments which have evidence of working in these cohorts of patients such as specific diets etc.
@Stephen Chaney: Thanks for reply. Considering the large percentage of those diagnosed with IBS in outpatient clinics would an approach of trying diet first rather than an expensive, invasive, unpleasant endoscopy procedure with attendant risk be a better course of action?
Is the endoscopy first approach being driven more by fear of missing a cancer and being sued for same rather than what may be a simpler approach?
Genuinely just asking, have had cameras both ends with nothing sinister found but have subsequently had success with dietary measures but not necessarily measures that consultants are familiar with.
This is one of the best articles offering a comprehensive and fair analysis on our Health System, I can’t fault it. This should be framed.
Agree with Dr O’Connor – balanced views sustained by experience. Have been treated well in both systems, though public AnE requires patience.
In the UK there are set targets for delivery – something like Cancer surgery within 4 weeks maximum. If we set our public hospitals targets and then offered the patient free private care if not met that would focus minds on efficiencies.
@Pat Redmond: or just pay hospitals (and drs etc) per procedure. The countries with the shortest waiting lists are those with systems based on insurance where hospitals are paid like that.
he makes some valid points, but the chances of Ireland producing a high quality low cost health service are slim. We don’t do low cost for things like that in this country.
Great article and much that needs to be said- just would like to suggest another option- we need to recognise that the price tag on patented medicines bears no relationship to the cost of bringing the drug to market- but is the price unilaterally set by Pharma and is based on the maximum profit it can bring to its shareholders- which for life saving or life enhancing drugs is very high indeed. We need to bring some balance of power to the negotiating table to prevent monopoly abuse- ultimately by replacing the monopoly with an alternative incentive such as grants for R&D.
Off topic.
have your say