If you’re disabled in the UK, then you’ll be used to having your impairment reality questioned by others. Are you really that sick? Are you malingering? Is it because you are just a weak person? What did you do wrong to get like that? Is it because you want special treatment because you are lazy and/or self absorbed? You don’t look like you are in enough pain. You were fine last week. You shouldn’t be like this at your age. You’re too nice to be in a wheelchair. You’re a scrounger. You’re a cheat. Give me those crutches, you don’t need them! We don’t believe you or your doctor, you are fit to work. The list of ways our experience is denied feels endless, and ranges from genuine ignorance, to faux concern, to outright abuse and violence on both personal and institutional scales.
Drawing from my own life I can see the pattern of erasure, of invisibility, of not being heard by those I trusted to believe me. Well-meaning friends, family, teachers, medical professionals, and the law let me down time and time again. My neurodiversity was ignored because I was “too bright to be disabled”; instead I was sloppy and lazy. My CPTSD & associated dissociative disorder was just put down to girls, and then women, being hysterical. I was attention seeking (in a pejorative sense) and a liar, and pretending to hear the voices of different personalities to cover for being a teenage girl. My joints popping out from EDS was “just what joints do when they pop”, and I shouldn’t be a baby about it hurting because it doesn’t hurt other people. I was told my pain resulting from two massively complex abdominal surgeries wasn’t real, it was in my head and if I just got over myself it would go away. Always asked things like; Did I need those crutches to cushion my walking? Did I really need the seats at the front of the bus? Was I just using them for sympathy? Was I just using them so I could get benefits? Why am I using a wheelchair when I can walk a few metres? People would tell me I didn’t look like a real wheelchair user; they’d watch my legs on the bus and tsk at movement, they’d tell me I was just fat and lazy, that if I wanted to walk and stop scrounging I could. The DWP (Department of Work & Pensions that governs access to the two major disability benefits; ESA, and PIP) would test me, send me test results that didn’t reflect the testing, and strip me of financial support because they thought not only I, but my doctors as well, were lying. Even in places I should have felt accepted, my fellow disabled comrades would decide that because I’m a wheelchair user I must not live with chronic pain and fatigue. They’d assume I’d never lived a life thinking in ways that differ from the socially mandated norm. Not only did I feel like my life was being erased and replaced by stereotypes from the government and the non-disabled population, it also hit me from parts of the disabled community too.
My life felt like a massive endless slog of trying to prove to everyone I met that I wasn’t lying. I spent years trying to get validation from the government and those around me. Naturally, I would also start doubting myself; I would start doubting the huge files of medical evidence, my doctors and my memories. Upon the shock diagnosis of kidney cancer I recall feeling guilty and wondering to myself how I’d managed to fake that as well as everything else. Feeling like I had to have the surgery not as a cure, but as punishment for somehow creating an attention seeking tumour. A lifetime of erasure and seeking validation that would never come (perversely because the harder I sought it, the more people assumed I was acting like someone trying too hard because they were faking) meant I had lost all faith in myself and others.
Initially I blamed my body & mind for being broken; they were the underlying reason that I couldn’t live like the non-disabled people, they were the reason everything was so hard. I had an unchallenged belief in the just world fallacy, and thought that if things were going wrong it was naturally my fault.
The just–world fallacy or just–world hypothesis is the cognitive bias (or assumption) that a person’s actions are inherently inclined to bring morally fair and fitting consequences to that person, to the end of all noble actions being eventually rewarded and all evil actions eventually punished.From Wikipedia “Just-world Hypothesis” as of July 2020
For years I held onto the hope that if a doctor would just listen and believe me, then they’d do what we are all taught that doctors do; they’d make it all go away. But as time went on it became clear that they couldn’t make it go away. Some of it was in my genes, some of it was in my organs that were simply messed up so bad the damage couldn’t be undone. They couldn’t stop the nerves sending pain signals. They couldn’t give me pain medication that completely numbed the pain without also destroying my ability to consciously function. There are no pills that will alter the fact that prolonged exposure to life threatening trauma changed how I experience the world and cope with stress. No drugs will change the way my mind works, my neurodiversity is as much a part of me as my EDS. This is my life, this is my body and mind, and at the end of years of searching for external validation, I’ve decided not to blame them for being the way they are and learn to validate myself. Heck, I figure that even if all the things that people have called me over the years (because they don’t like to acknowledge that the world isn’t just) were true, then I’d still be a human deserving of support, and my struggles would still be valid.
My hope is that from my example you can see a little bit of how we disabled people, regardless of impairment, have our lived experience constantly and systematically invalidated. It’s something that is deeply painful and deeply unfair. Being seen, being acknowledged by others is one of the most basic human desires. Even the most self-assured person still suffers if their reality is systematically denied like that. In an abusive relationship it’s called gaslighting; it’s a form of psychological abuse designed to break its victims ability to trust anything they experience and to make them susceptible to another’s control. In my experience it goes like this:
- We are invalidated by people & systems.
- If we want to feel validated we are forced to seek validation from those same people & systems, be they people we know or medics or the government, then they either
- Invalidate us further, or
- Give us a scrap of validation, just enough to stop us giving up all hope, often in reward for accepting the narrative that we are the problem, then they go on to invalidate us again.
- We are left still feeling invalidated, hurt and angry. Because we are told that the people invalidating us know best and are being fair, and we’ve been taught to believe this, we then focus the blame back on ourselves.
- Our desire to no longer have an impairment increases. However doctors and occupational therapists tell us it’s impossible to no longer be impaired and that there is nothing else we can do to lessen the symptoms except maybe trying a diet, exercise, employment, CBT or some other therapy.
- Which once more leaves us feeling like our needs have been invalidated and the cycle repeats. Each time reinforcing the idea that the only way to have a decent quality of life is to do the impossible and to magically no longer be impaired.
It all raises the question many of us have struggled with in our darkest hours: how does someone who can’t become non-disabled stop being disabled? The system continually pushed the notion that death was my only escape, and that is soul destroying to live with. Who needs explicit eugenic programs when you can continually implicitly nudge people towards feeling like that is the only way to stop the misery?
I couldn’t go on feeling increasingly like the world would be a better place with me gone. Eventually I realised that while I couldn’t make everyone suddenly stop being disablist, any more than I could change my genetic structure by positive thinking, I could start seeing the system for what it was and attempt to no longer play my role in it. I could stop blaming myself and start asking why these people in positions of power over me treated me this way. Why did they always assume I was a liar? Why did they lose interest in supporting me when there were no more medical interventions? Why was there no system to help people like me adjust to a massive change in circumstances? Why do people assume that I’m either a tragedy – a living warning to all, a super-crip that hasn’t found their special power – or I’m lying scum of the earth, here to suck the life from decent people?
I found a lot of my answers in reading & hearing about the social model from campaigners who had been fighting for change since before 1995, back when the social model of disability was a materialist critique of the way capitalism oppresses and marginalises disabled people. I saw how the pressure to make our bodies and minds change to be like non-disabled people came from the top down. It hit those of us who can’t change, those of us that didn’t believe we should have to change, and those who wanted to change some aspects of themselves (e.g. to better manage an undesirable symptom) but not everything. There was no acknowledgement of how harmful that message was to us others, the vast majority of disabled people. In fact it seemed purposefully pushed by the media, by charities, by the government, the language most used around disability, and by some disabled peoples groups where the message had been internalised. I saw how the neo-liberal governments had taken the anti-capitalist critique and twisted it, so that instead of just directly blaming disabled people’s impairments for their oppression they started blaming disabled people for still being disabled after the paltry changes the toothless DDA (Disability Discrimination Act, 1995) brought in. They took the idea that society needs to change to accommodate disabled people, and decided that a small number of shops & transport having ramps, and some places having hearing loops and large print was all it took. Not only did this hurt disabled people, but it warped ideas about the social model and placed the blame for societal failure to adapt on the disabled people whose emancipatory politics they twisted into another tool of oppression. They discovered that by psychologically abusing us on a large scale, by making us constantly fight for basic human validation of our suffering, we would not have the energy to challenge them, and when we did the desperate public, so wrapped up in blaming the other, would ignore what they perceived as scroungers asking for more.
There are many ways systemic disablism acts, and forcing us to spend our lives seeking basic human understanding and acknowledgement is one of them. In the next 12 months I’ll be forced to start jumping through hoops again for the DWP, being told that I’m guilty until found innocent at every step. My hope is that as with my last assessment I can find strength in understanding what this system is, why they are doing it and why it isn’t my fault that I’m treated in the dismissive way all applicants are. I’ll probably still revert into old thinking patterns at some point, but knowing that the DWP are the ones in the wrong, and so are all the political parties that support this kind of disablism, I’ll know not to channel my anger inwards any more.
The real kicker is realising that the search for validation doesn’t just hurt us by trapping us in a downward spiral of doubt and anguish. It also uses our misery, and our completely natural human desire to be understood by others, to help propagate disablism. For example;
- The crip doth protest too much! There is a common cultural cognitive bias that the more that one complains about an issue, the less valid it is. People ask themselves “Why would it need restating so often if it were true?” ignoring the wider context of the disablist pressures we are under. It’s especially an issue for disabled women, and disabled BBIPOC that experience additional assumptions of being prone to over-exaggeration. This helps further cement the idea that we are exaggerating or lying in the minds of the people that hold that bias, and increases the likelihood they’ll invalidate us.
- It focuses us, and therefore focuses the conversation, on our impairments and our differences in bodily/mental form and function. This helps perpetuate the harmful narrative that disability is an individual tragedy. See “What is disability?” for a break down of the problematic individual tragedy narrative.
- It serves to make us visibly preform misery for the audience of non-disabled people around us. It reinforces the idea that being disabled is to be desperately feared (beyond the simple human desire not to experience pain and alike). It becomes a fate worse than death, which is a fear those with eugenic agenda in mind can and do manipulate to push for our removal from the world.
Breaking the validation cycle, finding ways to liberate our minds from this disablist narrative that our self worth is based on how people riddled with disablist ideas see us, and the system of oppression & psychological violence that it is, is one of the steps we need to take if we want to emancipate ourselves and others.
- Google benefit sanctions, and ESA or PIP denied and read some peoples stories
- Scapegoat by Katherine Quarmby
- Crippled: Austerity and the Deamoinization of Disabled People, by Frances Ryan