Article quick facts:
- Referring to autism and other neurodivergence as “hidden” or “invisible” lacks nuance because sensory and coordination disabilities are often visible depending on context
- Apraxia and sensory disabilities are often misinterpreted as willful behavior or laziness and are socially punished
- The medical model of disability is incomplete and also lacks nuance, causing harm to people whose disability is at least in part dependent on environments, social norms, and external circumstances
Social media memes, and restroom doors, and accessible changing rooms declare, “NOT EVERY DISABILITY IS VISIBLE!”
True… but that doesn’t go far enough to make life any easier for many of us.
These statements about the visibility of disability are a well-meaning and important message to consider. I often present as “normal” …and that is where the problem of “hidden disability” begins.
Glossary:
- Apraxia: often called global coordination disorder, dyspraxia, or developmental coordination disorder, is a motor planning disability that makes performing many tasks difficult, including speech, walking, balance, organizing thoughts, sequencing, identifying emotions, hand writing, especially in novel situations and environments
- Interoception: Identifying and being able to describe feelings and sensations within the body. People with poor interception may not be able to recognize or identify when they are in pain, thirsty, hungry, tired, needing to use the restroom, anxious, dizzy, or ill.
- Proprioception: understanding and sensing one’s body positioning in physical space based on information from the skin, inner ear, eyes, and pressure on the joints. People with poor proprioception may not be able to know how move their body without looking at their limbs, know how much force to apply when engaging their bodies, or understand how much distance there is between their body and external objects.
The medical model of disability:
“…primarily figures disability as a problem of individual bodies in need of cure or repair” (Yergeau, 2018).
The medical model of what disability is encourages us to look for what is “wrong” or “lacking.” Most people expect to see something that clearly identifies a person as disabled. People who are walking unaided, not accompanied by an assistance animal, who speak fluently, or are not using a white cane are considered to be fine– or normal— and not requiring any adjustment in attitude, environment, or communication.
Humans are a neurodiverse species, we are racially diverse, we are chromosomally diverse, and have diverse genders, sexualities, and communication methods. Every single human being is unique, yet we are still fed ideas of how we should behave, how we should look, even how we should move!
Social norms, to everyone’s disadvantage, encourage people to conform, and there is sometimes leeway given for those humans who— on first impression— can’t behave or move in a certain way. Unless people see a wheelchair or other indicator of physical disability, they tend to assume any unexpected behavior is a threat or a willful desire to be different.
These first impressions people make when encountering “visibly” disabled people are sometimes helpful, sometimes discriminatory, and often rely on generalisations and stereotypes. But those of us who give a first impression of so-called normality, may face disbelief, embarrassment, suspicion, or a myriad of other emotional responses when we make our needs known.
So often, my disability is visible, but it doesn’t fit with those stereotypes and generalisations that come to mind when we view the diversity of our fellow humans through a medical lens.
The statements declaring that not all disabilities are visible disappoint me because they lack nuance. To start with, my disability is visible (if you looked at things without those stereotypes), and here are a few examples of why:
As a child, my disability was obviously visible every time I went to the public swimming pool. I got picked on, bullied, and teased. It was visible, but not in the accepted way that disabilities resulting in assistance, pity, or a mobility aid are– so the teasing, bullying, and name-calling were more likely to be overlooked or excused.
Take the example of the swimming pool. I walk differently– especially when I am having to walk in water one moment and on dry land the next. Swimming under water, I experience the wonderfully soothing deep pressure of the water on my whole body and it gives me that instant regulation and calmness that proprioceptive input is so well known for.
Then, as I climb out of the pool and walk to the changing rooms, that pressure and calmness are suddenly replaced by flimsy air that provides me with nothing at all. My legs turn to jelly and the edges of my body get lost again in the external world whilst my brain is screaming “save me from the terror of the noise, smell, and lights!” The overriding sensation of wet feet is more powerful than anything else, and my legs are still convinced we are walking through water.
Or, according to the unkind children and the finger pointing adults sharing the pool with me, I “walk funny.” I still walk funny— in fact, I plan almost every step I take. I have very few physical movements that require no thought, and those that do require no conscious planning or directing, are not the sort of physical movements that are perceived as particularly useful!
I can play musical instruments without conscious thought. I can drive without planning my motor movements (pun totally intended!). I can stim without even realising I am (another gift to potential bullies). But I cannot go up or down stairs without being able to see my hands and feet.
I cannot walk “normally” on the poolside after being in the water. I might scream instructions inside my head, demanding my legs walk properly. I might remind my feet with an angry internal voice that I am on dry land now— but the message is disrupted and delayed and I have no control over how I walk.
My disability is visible in so many settings, but it doesn’t always fit with the idea society is sold of what constitutes disability.
- It shows whenever I carefully craft a joke using logic and my extensive research of popular culture– but deliver it in a monotone voice and with terrible timing!
- It showed whenever I was told to hurry up tying my shoelaces, putting on my coat, or brushing my hair, and my train of thought was lost, and I couldn’t get back on track with the task, or had to start it all over again.
- It shows when I unexpectedly see someone I know but haven’t had time to script a suitable greeting in my head, and I dump a load of random, boring facts on them about why I am in that place — but unlike my jokes, this time my words are delivered with disproportionate enthusiasm!
- In fact, every time I choose to share an interesting fact, as a way of entering into a conversation….or each time I point out an error or inaccuracy as a form of small talk, my disability is painfully visible. (I need to compassionately remind myself that correcting other people is generally not welcomed as a way of building rapport).
- It showed when I tried to keep up with conversations about make-up, pop stars, and boys – but was clueless and unable to take part because I didn’t feel like and dislike, attraction, and desire in the same way as my school friends, due to my interoceptive system working in a muted way.
- It shows when I go in and out of shops, and my brain and body are out of synch to the changes in temperature, lighting levels, smell, and noise. I immediately respond with pain to some of those sensations and have a delayed response to others that leaves me feeling all jumbled up and yucky inside, sometimes hours later.
- It shows when my face looks blank and disinterested, but I am actually so engrossed with what is going on, I have nothing left to put into working out and applying the correct facial expression.
- It shows when I become unable to speak or move or think due to overwhelm and my vulnerability sky rockets and acts like a beacon to potential abusers.
- It shows every time I use logic instead of intuition to work things out and appear awkward for taking things literally.
- It shows when I rely on my hypervigilant brain always scanning the environment for potential threats, and my activated body that is poised to respond to danger. This causes me to become overwhelmed and shutdown or interpret a social situation differently from how it was intended.
- It shows when my environment changes faster than I can process the new information, and I go from my comfort zone of being competent, confident, and engaging, to being lost, scared, and flustered. This can be misperceived as inconsistency or emotional instability by those who place the problem as being in me rather than in my environment.
But when I articulately express myself and describe what I need to remain in my “able” state of being, I am frequently not taken seriously because I don’t look disabled. Being Autistic highlights beautifully how disability is not best served by the medical model alone.
My ability to thrive, perform at a high level, and engage meaningfully with other people is part of who I am. In the right circumstances and environment, I can confidently say there is nothing lacking with me. For many— but not all— disabilities, there is nothing lacking with others in their “right circumstances,” either. I need no reasonable adjustments at home, because it is perfectly fine to be me— to be Autistic— in an environment I can arrange to meet my needs.
Do I get overwhelmed at home? Not often.
Do I get misunderstood at home? Rarely, and only as much as anyone else.
Am I less Autistic? No. In fact, I can be as Autistic as I like and do things my way, in my own time, eating the same meal every day if I like, engulfed in my fluffy blankets, my favourite music on repeat, and no lights on – or whatever it is I need to be regulated and at ease with myself.
Perhaps the issue we should all be talking about is not the one of “NOT EVERY DISABILITY IS VISIBLE” — because many of them are. Maybe it is time that society metaphorically opened its eyes to the idea of some disabilities being contingent on environments, procedures, and communication.
Physical adaptations like ramps and accessible spaces are frequently planned into new buildings. Procedures that use unambiguous language, or options for communication that do not rely upon the telephone, are less frequently encountered.
Many Autistic people experience sensory processing differences, some of which may be distressing or result in sensory trauma, and may find an event providing an affordance of sensory trauma to an autistic person may be perceived as inconsequential by non-autistic people in the same environment, if perceived by them at all (Fulton, et al., 2020)
The different ways Autistic people process the world drive the different ways we act in the world. We may think, feel, speak and move differently to non-autistic people because the way we process the world is different to theirs. It can be difficult for people whose experience of the same spaces, events, social interactions, and procedures are so different to ours to understand why these spaces, events, social interactions, and procedures are so disabling for us.
My disability is not simply a defect within my body or brain. My body and brain certainly work differently to the majority of people’s, but much of how I’m disabled is related to other people’s perceptions of my behavior and the under-accommodating circumstances of my environments.
The most impactful ways I’m disabled are rooted in how my differences are seen or not seen— and by how my differences are perceived.
I would love to see a time when we don’t need accessible restrooms to declare on the door that “not all disabilities are visible.” I look forward in hope, to a time when people won’t be scrutinising my body and brain for signs of “what is wrong with me” — but instead will be committed to making spaces, events, social interactions, and procedures accessible to all.
Editor’s note: A primary goal at NeuroClastic is helping to get information about what it means to be autistic and otherwise neurodivergent into the mainstream, like in classrooms and workplaces, because we believe in the goodness of others. We believe that most people, when given the right information, will automatically adjust their perceptions, interactions, procedures, and environments to be more accessible to all people.
References
Sensory trauma: Autism, sensory difference and the daily experience of fear. (2020). Fulton, R., Reardon, E., Richardson, K., Jones, R. Autism Wellbeing, CIC.
Yergeau, M. (2018). Authoring Autism: On Rhetoric and Neurological Queerness. Durham, NC: Duke University Press. p107