Aspire To Be Autonomous: How The Principles of The Neurodiversity Movement Can Empower Neurodivergent and Disabled People

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Key terms:

Neurodiversity – a fact that there is a diversity of human brains and minds

Neurodiversity paradigm – a specific framework stemming from neurodiversity being a natural form of diversity (like biodiversity) and that a ‘healthy’ or ‘normal’ is a social construct. It is a revolutionary way of thinking about being human because it rejects the pathologisation of anyone who diverges from neuronormativity.

Neurodiversity Movement – a social justice movement that seeks to advocate for the rights, equality, inclusion, and appreciation of neurodivergent individuals. It intends to end the marginalisation of neurodivergent people.

Neuronormativity – a series of expectations and social norms that centre a ‘right’ way to be human. E.g. speech is the gold standard.

Neurotypical – anyone who can comfortably and sustainably perform neuronormativity.

Neurodivergent – anyone who diverges from neuronormativity. Coined by biracial, multiply neurodivergent advocate and activist Kassiane Asasumasu in 2000. You can be innately neurodivergent e.g. dyslexia, Tourette’s, autistic, ADHD, learning disability, dyspraxia etc or acquire neurodivergence e.g. mental health conditions, dementia, brain injury, due to the effects of meditation etc. Neurodivergent is a term of inclusion, not exclusion.

As a physically disabled autistic person, my priorities will always be different to that of a nondisabled allistic person. One thing I am certain of though, is that whilst my priorities will change over time (as is true of all humans) they will never include independence. Independence can be interpreted to mean many different things, but for me personally it means not relying on others. This is impossible for me as a physically disabled person and can be equally difficult for fellow neurodivergent and disabled people.

Whilst I feel passionately opposed to the concept of independence, I appreciate for some people be it really is of the utmost importance and that deserves to be validated and accommodated. There are many reasons why I hold these views including the fact that in my experience, independence is spouted as the end goal in the eyes of many professionals. But why strive for a goal, that doesn’t exist in the first place? No one can do everything on their own, in reality we are all interdependent. The idea that being self-sufficient is a marker of ‘success’ or adulthood is not realistic, achievable, or even necessarily desirable for many people, particularly neurodivergent and disabled individuals. Success is self-defined and for some disabled or neurodivergent people could be as everyday as making choices about what they would like to wear or eat. For non-disabled or neurotypical people, this example may seem trivial however for the disabled or neurodivergent individual, the implications could be palpable.

Honouring autonomy is simple, yet its ramifications are huge for neurodivergent and disabled people. When autonomy is prioritised it sends the message that ‘I see and affirm you for exactly who you are.’ Striving for independence, on the other hand, can often be about trying to meet other people’s expectations with an internal monologue of ‘I should be able to do this’ or ‘I shouldn’t need help with that.’

Shifting from valuing independence to autonomy is hard like any major change in perception, nevertheless it is necessary and it is one of the six principles of the Neurodiversity Movement. Encouraging true autonomy for neurodivergent and disabled people means acknowledging that independence may be an aspiration for some people, equally for others it may not be. Whilst I have started this blog with my own objections to the concept of independence, valuing autonomy is about so much more than rejecting (or embracing) independence – it’s about giving neurodivergent and disabled people full choice and control over how we live our lives. That is powerful and what I I will continue to explore below. I will also consider the other guiding principles of the Neurodiversity Movement and how they intersect with my main theme of autonomy. Finally, I will end with how applying these foundations will benefit everyone in society, most notably neurodivergent and disabled people.

Prior to discussing examples of autonomy for all in practice, it’s important to acknowledge the other foundations of the Neurodiversity Movement. All of these principles are outlined in Sonny Jane Wise’s (known as Lived Experience Educator) brilliant book We’re All Neurodiverse: How to Build A Neurodiversity Affirming Future and Challenge Neuronormativity. The book is the source of inspiration for this blog, and the other principles of the Neurodiversity Movement are as follows: leadership by the neurodivergent individuals most impacted, intersectionality, access needs are a right, anti-capitalist and honouring the movements that came before.

There are many ways in which these principles intersect e.g. it may be more difficult for a neurodivergent or disabled person to have their access needs met if they experience multiple forms of discrimination. The fundamental objectives of the Neurodiversity Movement are deeply connected to the neurodiversity paradigm. For instance, fully understanding that there is no ‘right,’ ‘wrong’ or ‘superior’ way to think or be human more broadly means recognising that neurodivergent and disabled people are experts in our own experiences and that our ways of being are as meaningful and valid as any other.

Autonomy for all in Practice

A pertinent consideration when it comes to autonomy for all is that of self-identification. As a self-identified autistic person, I can categorically say that YES self-identification is completely valid (welcome to the autistic community!) and I can’t imagine why anyone would question someone else’s lived experience. However, it continues to be a popular conversation in autistic spaces for many reasons – in particular, the need for certainty or proof from a professional. I completely understand why this need arises – everyone deserves to have confidence in who they are, but by truly embracing the principle of autonomy for all it may not seem so essential. If autonomy for all was truly embraced, then would autistic people feel it necessary go through an assessment process that is inevitably pathologising? No, knowledge of lived experience and identity would be understood for what it is and not how closely it aligns with a checklist. Sure there may be other reasons to opt for formal identification, but when autonomy is truly valued it builds trust that we as autistic people are reliable knowers of our own experiences.

Accessing formal identification is a privilege for a variety of reasons and for the sake of clarity, neurodivergent is not a diagnosis, it is a socio-political identity and term. Neurodivergent is an umbrella term for anyone who diverges from neuronormativity and therefore identifying as such can be about reclaiming autonomy – it is a rejection of pathologisation. For neurodivergent people, using this term is about affirming experiences and acknowledging the right to not have to share information specific experiences, identities, or disabilities, saying I diverge can be meaningful enough. Furthermore, as I briefly mentioned neurodivergent as a term is meant to include people, not exclude them. It does not mean autistic or ADHD; you can be born neurodivergent or acquire neurodivergence.

Another example of autonomy for all with regards to all neurodivergent people is defining what functioning means. Your ability to function is often about how you present in public, but appreciating autonomy means recognising that functioning looks different for everyone and what works for someone, doesn’t need to help the next person – we are all individuals. For example, some ADHDers use medication as a tool in everyday life, likewise some people with mental health conditions need medication day to day. Equally some of these people don’t use that at all – and aspiring for autonomy is all about respecting choice both at significant times in people’s lives but also during daily routines.

Being Anti-Capitalist

As I briefly stated earlier all of the foundations of the Neurodiversity Movement intertwine. There are many examples of this including how actively challenging capitalism (being anti-capitalist) gives neurodivergent and disabled people more freedom (autonomy) over how we foster meaning in our lives. In society, there is a typical trajectory that people are generally expected to follow: education -higher education – work, this expectation is often embedded in schools as there is so much emphasis on grades it sends the message that your entire life will be determined by a series of arbitrary numbers and letters. Whilst I understand the obvious importance of gaining enough income to live, neurodivergent and disabled people deserve to be able to consider alternatives to employment or higher education. This is especially true as many jobs and workplaces are inaccessible and dominated by neuronormative beliefs – even if a neurodivergent or disabled person wants to work it may be extremely difficult or impossible to be considered for roles in comparison to non-disabled or neurotypical peers.

Furthermore, alternatives to work or education such as being active members of community/interest-based groups, belonging to day centres, spending your days following your passions, as well as allocating time to manage the administration that can come with being a disabled or neurodivergent person are all equally valid and important examples of living life. Our worth as neurodivergent or disabled people is not defined by our productivity and appreciating autonomy for all means recognising that there are so many ways to make meaning beyond traditional employment.

Reframing Autistic Experience

One of the many ways to make meaning beyond employment is by finding community or more specifically in this case, neurokin. Being a member of online autistic community spaces is hugely beneficial and has enabled me to reframe what being autistic means. This is thanks to being introduced to autistic culture and events like Autistic Pride Day or Autscape, where our natural ways of being are celebrated via sharing favourite stims or infodumping about our latest dedicated interests – amongst many other examples. The emergence of autistic culture is evidence of our community reclaiming identity, instead of the dominant assumption that we should feel shame about who we are, we take pride in our autistic experiences (and diverging from neuronormativity) instead. Autonomy for all is about exactly this, having the freedom to define and potentially celebrate who we are without being expected to fit someone else’s expectations.

Accessibility Enables Autonomy

Furthermore, freedom to participate in all aspects of life can only be achieved if access needs are met and that’s one of the reasons why I feel strongly about the principle, access needs are a right. If this principle were properly implemented in society, then not only could neurodivergent and disabled people find life much easier and also more enjoyable, we (as humans generally) could move away from using harmful and othering language such as ‘special’ or ‘additional’ to describe needs. Instead access requirements would be recognised, expected as a reflection of human diversity and perceived as foundational to participation – not considered to be an anomaly. This is what makes both the Neurodiversity Movement and Paradigm so powerful, appreciating and accommodating diversity is the default.

Self Acceptance

Undoubtedly, implementing the principles of the Neurodiversity Movement and fully embracing the neurodiversity paradigm will lead to positive change for the entire population, no matter the neurotype. Nevertheless, for us as neurodivergent and disabled people in particular, the impact will be much more personal because when difference is accepted, embraced, and accommodated it sends the clear message that you don’t need to change for anyone.

References

Wise S. J. We’re All Neurodiverse (2023) pg 10-38 Jessica Kingley Publishers

Wise S. J. Free Resources. The Neurodiversity Movement Guiding Principles. Lived Experience Educator.com

autscape.org
#autistic #disability #neurodivergent #neurodiversity

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