The Beauty of Decaying Labels: Reflecting on Philip Patston’s TEDx Talk.

Philip Patston is a disabled white gay comedian, who asks us to think again about our use of labels.

He recently took part in a TEDx talk in Auckland, which I share below and encourage you to watch and share too. It’s entitled “The Label Libel, A New Look at Diversity.”

Patston covers a lot of ground in his talk; I just want to emphasize and reflect on certain elements that spoke to me as someone immersed in the autism world. What I say below is more tightly tailored to the disability world I see everyday than the more general issues he addresses.

Though Patston rightly recognises the importance and value of using labels, he challenges us to take a closer look at the dysfunction of labels. Even within disability movements, there is a tendency to rely too heavily on labels to capture a “sameness,” that does a disservice to the uniqueness of the labeled individual.

He asks us to consider that we each carry multiple aspects of humanity (ethnicity, health, gender, etc), which are scales of grey rather than black and white divisions. For example, healthy versus unhealthy is not always a useful and accurate division (a lesson I’ve learnt through my autistic son’s insistence that I label every conceivable food as one or the other!)

Patston challenges us to get away from thinking of people in terms of the labels we place on them (or indeed, that they may place on themselves), and instead focus on commonality and uniqueness: In each of those aspects of humanity, we have things in common with others, and things that make us unique from others. So using a label can mask these divisions, not just in terms of the grey rather than the black and white on each scale, but also in terms of keeping an eye on the uniqueness we always retain despite carrying around our common labels.

He uses a metaphor of “decay,” but in a positive way (which is quite clever, in the very fact that it undercuts the label of “decay” – you’ll have to watch his leaf analogy to truly appreciate the idea). There are two ways in which he asks us to decay existing paradigms, that I want to comment on: Identity, and agreement. Both of which commonly arise as issues in the autism community.

In regards to identity, Patston encourages us to decay the notion that we are one thing, and not another. He wants us to resist locking ourselves (and others) into labels, which have the effect of highlighting one aspect of ourselves in a way that hides or belittles the rest of who we are. Which is to say (to restate what I said two paragraphs back), that not only can labels be misleading in their commonality and their black / white categorization, but they can also overly simplify our true complexity and lived realities.

Over the past year I have become increasingly wary about the amount of power given to the idea of autism, when someone adopts it as the core of their identity, a power that is highlighted in times of diagnostic change. I accept that some take great comfort and positivity from choosing autism as their identity, but I think we must be careful about accepting any rhetoric that tells us this is the only way to truly accept and recognise “autism.” We should be wary (and critical) of the claim that those who deny autism as identity, are doing damage and an injustice to themselves (and to their children.) Which brings me to the second point of decay: Agreement.

Patston thinks we should decay our need for agreement in community. That we should recognise that there is diversity ever-present even within a community that yet binds itself to a cause. A classic example of where this goes awry: a community might insist on and chastise those who do not use the “correct” language when referring to particular ideas.

In the autism community, there is often talk that we must only use one phrase or word to talk about ourselves and others, and an outcry when people dare to not abide (for example, “autistic” versus “has autism,” and “disability” versus “differently abled”). By insisting on agreement and harshly judging those who do not conform, we again downplay the reality – the true diversity – among us: We may carry the commonality of living with autism (either in ourselves or our loved ones), but we also each bring with us uniqueness in our other aspects of humanity, and in our experiences and perspectives.

Which is where I find the contradiction in the Autism Neurodiversity movement, quite maddening at times: To cry out for acceptance of diversity, but insist there is one right version of it. To group together under one title that names itself by diversity, but in doing so already defines how that diversity must be thought of and talked about. (For an extended examination of my views on the movement, see my post “Acceptance of Diversity within Neurodiversity..?“)

Similarly the insistence I’ve heard over the past couple of years that we should all just get along, that we should stop fighting with each other and focus on agreeing that we need more services and funding for all autistic people. In one sense, this accepts uniqueness, in that it acknowledges we have different views on terminology and the origins and nature of autism.

However, it also assumes that agreement is possible in areas that are actually just as (beautifully) diverse: Our views on what is good for autistic people, on what is the good life, on politics, and economics, and on so many other ways in which true diversity remains. Insisting on agreement, ultimately aims to silence true disagreement, which sounds trite, but let me explain: It is better to acknowledge and hear the disagreement, than to hide it away and deny it is there or should even be there. The diversity of ideas about how to see and think about autism, forces us to confront our own assumptions, and challenges us to defend them. We may not like being put in that position – it may feel uncomfortable and even threatening – but denying others views don’t make them go away, and may leave those other people feeling just as uncomfortable and threatened. Better to speak openly and honestly and recognise diversity, than to pretend to speak for everyone in a group when really you speak for the portion that happens to already agree with you.

A lot of this talk of accepting diversity may sound close to relativism or nihilism, but I argue it’s not that extreme, for two reasons: There is not the denial of truths and knowledge, rather the recognition of the complex and challenging reality that we all carry these commonalities and uniquenesses. Further, there is the explicit acceptance that there is positive value in the use and recognition of labels, but that value must be tempered by recognition of the down-sides and oversimplification caused by labels too.

Making you agree with Patston’s own words, or with my elaboration and application of the them to the autism world, is not the end goal of my post. I only want to share these ideas, and share my musings on them, to see what comes of it. Not to force you to accept and agree and conform, but to re-think and reflect and re-see. At the very least, I think there is objective good that comes from pondering the use and misuse of labels, in particular in thinking about the point that if we must use labels – and it appears that we must – that as much as possible we must use them for the betterment of those labeled, rather than to hurt, restrict, or hide an individual’s uniqueness.

But those are just the musings of a white atheist Jewish New Zealand mother… for want of a better label.

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16 Responses to The Beauty of Decaying Labels: Reflecting on Philip Patston’s TEDx Talk.

  1. dq74 says:

    Wow, thank you so much, this is briliant food for thought! I loved Patston’s talk and your thoughts are fascinating, insightful and provocative (in a good way)

  2. keith says:

    When someone identifies themself with a label I first ask why. What forms of alienation they suffered to cause them to now want so desperately to belong. My own beliefs about definitions become meaningless compared to the need for empathy in those situations.

  3. Shazza says:

    Really interesting post. I like Keith’s comment above, I think identity and community are powerfully linked. It explains for me the power of religion too, in that by identifying strongly as belonging to a particular religious order, people identify themselves as part of that community. People don;t say they ‘follow Catholicism’, they say I AM Catholic. The concept of a label as identity and thus belonging to a particular ‘tribe’ is particularly powerful for those who have felt disconnected previously. And so serves a purpose in that respect. But for those of us raising autistic children this post raises some complex questions around how we frame up their autism to them.

  4. blogginglily says:

    I love when you’re on a roll…

  5. jentroester says:

    I want to marry this blog post. THANK YOU, THANK YOU, THANK YOU!!!!!!!!!

  6. Quintorpian says:

    Thank you for this post. Very timely as i’ve been thinking about this alot recently. I have been looking at why i feel so ambivalent about talking to my son about his ‘autism’. I certainly see the label is useful some of the time and for an autistic person themselves, if claiming that term as part of their identity is useful to them in terms of creating a belonging, or explianing things, or securing support and services, well then that is valuable. But my own ambivalence comes from the recognition that i myself am on the spectrum (mostly passing as an idiosyncratic ‘normal’ person). And i am just not sure if i want to climb onto the bus of autistic identity because i see the norms that exist in the neurodiversity movement as well, as you mention. And as soon as i start feeling the pressure to be a certain way by virtue of my membership of a certain group, then i just want to run for the hills. I think it is just wired into the human psyche to categorise and simplify and render into black and white, things that will ALWAYS be grey. I think we just need to learn ways to have our labels but to use them more lightly and not to constrict ourselves or other people.

  7. Thanks for such a generous review – really enjoyed your insights into autism too. Go well :-) PP

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