Internalised Ableism is a common experience that many people do not have a label for. Picture this; you wake up one morning and you feel rotten, your legs feel heavy and you can’t get out of bed. You realise that you won’t be able to make it to the kitchen, much less work. So you contact your workplace to let them know. You contact the doctor who lets you know that you will, “be back to normal”, in no time. But the longer that you can’t get around, the more isolated you feel. Frustration would build if you didn’t feel so fatigued. You don’t have the ability to watch much tv, listen to the radio, or scroll the internet. It is as if time, even life, itself is slowly being drained away from you. All you can think is; “when will this end?”. You apologise to your loved ones, you push yourself to get things done, you feel incompetent. The thoughts stemming from a lack of self-compassion could all be considered to be internalised ableism.
For some of the population these feelings pass and they return to the experience of being abled, for people living with disability, mental health challenges, neurodiversity or chronic illness it does not. While the neurodiverse experience is not literally like the above example, consider the above description a metaphor. Not only do you have to confront the many ways that the world is not made for- or accepting of- you. You also have to confront the many lessons that you have absorbed about your body and mind.
What is Ableism?
Ableism is the idea that there is a “normal” way to experience being human, it is replete with negative messages and stereotypes about being anything but abled. It is seen in the workplace, medical environments, learning environments and the media. Media coverage is rich with examples; there is the gluten free trope that suggests that going gluten free is not a medical necessity but an unnecessary, high-maintenance choice, or that the autistic person is a man who posesses an innate genius that requires no learning or practice, or the idea that wheelchair users are “faking it”.
Then there is the idea that the health condition, mental health condition, neurodiversity or disability is an “origin story”. This is known as the disability superpower trope. Which makes the person an object for consumption.
Wheelchair tropes often ignore why the wheelchair user needs the wheelchair in the first place. They experience no barriers to their day-to-day life and no issues with accessibility. This also happens with the rain man trope, ADHD is treated as a punchline because instead of addressing the real life challenges of ADHD the character…wait, look at that! SO SHINY!
Sidenote: This isn’t an attack on story-telling. Just a discussion about these well-worn tropes, which inform us about accepted stereotypes or lines of thought about disability, mental health, neurodiversity and chronic illness. Media gives us the opportunity to discuss these examples without using real people’s personal stories.
These stereotypes and lines of thought are contrasted with what we are told is “normal”, without ever being told what that is. Instead of “normal” being a personal gauge for each of us to consider our individual lives, stereotypes apply discriminatory generalisations to individual people.
Internalising negative messages and stereotypes
At best ableism is the idea that, disability, neurodiversity and chronic illness are not of consequence and at worst, things that are demonised and objectified as being worthy of attack. It suggests that any adaptation for the person is unreasonable and that if you were “truly worthy” you wouldn’t ask for help or a change in practice in the first place.
But lived reality begs to differ. In terms of chronic illness, neurodiversity and disability, you need to adapt to your symptoms, and navigate systems that are content to tell you that it is entirely psychosomatic or “to be expected”. On average it takes 10 years to be diagnosed with Ankylosing Spondilitis, 5 years to be diagnosed with Fibromyalgia, and up to 16 years to be diagnosed with M.E./ CFS. In that time, life moves on without you. Left to it’s own devices, your mind starts to think “maybe I am faking?”, “maybe I should just try harder”, “why can’t I be normal?” all while being incapable of doing even the most basic tasks that your abled peers take for granted.
There is that word again, “normal”.
Internalised ableism is an act of comparison which, as we’ve discussed before, is a self-esteem trap.
Internalised ableism turns us into our own worst enemy. We have internalised negative messages about neurodiversity / disability / mental health challenges / chronic illness and now take them out on ourselves.
For example:
Jellinek (1999), estimated that by the age of 12, schoolchildren with ADHD will have heard approximately 20,000 negative comments about their behaviour when compared with their neurotypical peers. A later estimate by Dodson (2000) found that this average is reached by 10 years of age. At which point children have a further 6 years in school. Neither estimate included interactions outside of the school environment. Internalised ableism in terms of neurodiversity can mean internalising these negative comments and stereotypes; “I’m weird”, “I’m lazy”, “I’m stupid” and even, “I am the worst human ever”.
Chronically ill people delay buying a mobility aid due to factors like identity, pride, or fear of judgment. The average we have seen in our client groups is 5-8 years, the most common reason is that the person, “didn’t feel disabled enough”. That’s 5-8 years of being housebound, making do with chronic pain and not being able to be part of society because of internalised ableism. A mobility aid can help a person thrive, instead of making this message loud and clear we are routinely told that disabled people are benefits cheats and are faking their disability for an easy life, in spite of clear data to the contrary:
“The focus on benefit cheats is disproportionate to the reality. (Benefit) Fraud amounted to just 3 per cent of welfare payments in 2020-21, or £6.5bn. This looks even less significant when you compare it with tax fraud…. 5.1 per cent”
– Why the trope of benefit fraud has returned – New Statesman
Once they do take the step of obtaining a mobility aid many wish they had done it sooner.
Challenges to our concept of self
Few people would willingly adopt the ableist notions of what it is to be disabled, neurodiverse or chronically ill. These notions are not only offensive but limiting, and inaccurate. When we consider any human as a static 2d idea we are doing them a disservice. Check back in the future for a post about this!
In conditions where our abilities vary from day-to-day, what does it mean when we say “I can’t”? What are we referring to if on a Monday our body is happy to walk, but by Wednesday we are physically incapable of walking more than 2 steps? Should we infer meaning from those 2 steps. Internalised ableism would say, “yes, those 2 steps mean you can walk and therefore do not need a mobility aid in spite of the fact that that is all of your physical capacity for today and maybe the next week”.
It can also mean lying to ourselves and other’s about our ability. It means engaging in a level of cognitive dissonance about our own lived experience simply to uphold “the norm”. In the words of an excellent Social Work Lecturer that we worked with some time ago, “People always overestimate their ability levels”. This is largely because no-one wants to admit that they, “can’t”, anymore. What we do is part of who we are, accepting changes to this can mean that we enter a grieving process. We fear being seen as incapable or being perceived as lesser because deep down we are fully aware of ableism. We just lack a vocabulary for it.
In health advocacy we have heard the following from patients pleading with their GPs for help, “I’m not lazy”, “I’m not trying to get a free pass”, “I’m not trying to abuse the system”. Each of these comments are common talking points. People struggling with their mental health, fighting chronic illness, living with disability and/or neurodiversity are often scapegoated this way. Is it any surprise that we internalise these messages?
We are all victims of ableism and no one is immune from internalised ableism. Look at the way that senior citizens “dont want to be a burden”, “seen as an invalid”, or simply do not want to admit to their loved ones and themselves that, actually, things are changing for them. Internalised ableism can show up as resistance or outright denial of a change in the person’s ability now they are older.
Final thoughts
We live in an inaccessible world, the more that we each cling to ableism and it’s internalised form, the more we perpetuate inaccessibility as a norm. The consequence of this is that we inadvertently hurt ourselves and perpetuate the lack of accountability that is required for an accessible world.
Meeting our internalised ableism is part of the grieving process. We are letting go of the things we had accepted as unwavering reality and embracing an unknown. Daring to see ourselves as we are, however that may be and turning our backs on the stereotypes about mental health conditions, neurodiversity, chronic illness and disability. In doing so, we rebel; we choose ourselves and recognise the validity of our lived experience. And that of everyone else.
