Labelled with Love
Medical vs Social Models
I am autistic and I am disabled.
I don’t have an issue with making that statement, either part. I was formally identified by a clinician, and this is the realty of being autistic in a neurotypical world. Neither element offers reasoning for the assessment, but I present them as facts. Both statements have implications on how others see me, not necessarily how I see myself. I am aware that for some autists I have spoken a lie, broken a sacrosanct and accepted an ableist view. I disagree.
Labels aren’t a necessarily a negative, they can be a force for good.
The medical model of disability says people are disabled by their impairments or differences. It considers what is ‘wrong’ with the person, not what the person needs. It creates low expectations of both the individuals and societies responsibility towards that individual. I do not support this definition.
The social model of disability is a way of viewing the world which effectively says that people are disabled by barriers in society, not by their own difference with “normal” people. Barriers can be physical, like noisy chaotic offices, or they can be caused by people’s attitudes and indifference, like assuming autists can’t do certain things. This is the model to which I subscribe.
That’s a crucial point — my autism isn’t the disabling factor, my environment is. In my own home I set my environment and control it — I am perfectly able to function in all regards. It’s whenever there’s an outside influence that this changes. It’s important to celebrate the differences between autistic people and the neurotypical, but also recognize the need to accommodate autism rather than disable us. The inflections in labels matter.
We autistic people are people. We aren’t “trapped” in the bodies of autists. We are trapped in a society that’s neurotypical.
I had no understanding of any traits that identified me as autistic until I saw a clinician who was expert in the field. Afterwards I was inspired by this newfound knowledge and sought to understand how my operating system affected my daily life. I quickly learned to unlearn my preconceptions about autism, and my internalised ableism, but with that comes a huge slice of imposter syndrome. My immediate need was to talk to people in order to make sense of it, to share experiences with those who understood. I still harbour a lingering doubt that I am autistic despite two years of investigating (ah, imposter syndrome, my old friend), but deep down I know the truth. And I now know the impact.
With most visible disabilities, people receive empathetic understanding, they are recognised as being differently abled and requiring support. They are not judged for failing to meet some able-bodied, neurotypical standard. Instead, they are reasonably accommodated, offered patience, and are not expected to function on the same level as a neurotypical. After all they are obviously not “typical”. That even applies to certain autists, those where their autism is more visible because they struggle with very basic tasks. Those who are labelled as “low functioning” (eugh!).
But the majority of people who are not visibly disabled are treated as if we are a nuisance. We are seen as incompetent, incapable, or just deliberately awkward.
But by the societal standard we are disabled.
We shouldn’t shy away from that, but rather shout it from the rooftops. We need society to make reasonable accommodations for us because, ultimately, we are the ones who suffer.
At the same time though, we need to make sure people understand what in their world disables us, if we are to get the change we need. We have to challenge the misconceptions about autism.
Yes, we can act like neurotypicals, and that can hide our true needs, but that doesn’t magically improve our executive functioning. It is acknowledgement, on our part, that we need neurotypicals to understand that looking and sounding like them achieves nothing in regard to whether we are, in fact, disabled. We still need a level of respect and support like they will willingly provide to people with visible disabilities. It’s their society, they create and run it. We need to help them understand why it’s their society that’s broken, not us.
Having laws which require appropriate accommodations is only effective if we explain what those accommodations are. The majority of the population aren’t neurologists or autistic and are completely unqualified to make any decisions about our capabilities. We need to tell them. We need to say, “I am autistic, this environment is disabling me”. Hiding from that only hurts us.
The social model of disability helps us recognise, and challenge, barriers that make life harder for disabled people. Removing these barriers creates equality and offers us more independence, choice and control.
Labels matter, so let’s own them and use them for good.
“I wanna see a feisty group of disabled people around the world…if you don’t respect yourself and if you don’t demand what you believe in for yourself, you’re not gonna get it.” — Judith Heumann