Being Disabled: Success, Failure and The Lies We Tell Ourselves

{This series is based on my personal experiences re. living with disability, in my case Chiari & Intracranial Hypertension with Migraine & assorted comorbid unpleasantness, that has kept me housebound for several years.}

One of the dubious truths we pass on to our children as we try to guide them into becoming happy, fulfilled adults is that the key to being successful in this life is simply hard work. We encourage them to ‘do their best’ and ‘work hard’; we (sometimes unwittingly) allow the ‘you can do anything if you put your mind to it’ mantra to seep into their developing brains.

We are, of course, lying to them.

I wouldn’t say it’s an outright or necessarily deliberate lie; more like a lie of omission that is knowingly or unknowingly told, depending on the life experience of the speaker. The vital piece of information that we’re leaving out is this – sometimes, you’ll try your best, put in (to go all Deadpool for a moment) maximum effort…and it will not be enough to achieve the goal you’re striving for. It’s a brutal notion but no less true for that.

When I was 17, I applied to Magdalene College, Cambridge to read English Literature (I’d been fortunate enough to attend a residential summer school at Queens the year before & had fallen in love with the place). Applying to Cambridge or Oxford was not common for kids at my school. I submitted my application and attended the three required interviews; I was surprised and delighted to receive a conditional offer. I worked really hard to prepare for my exams. But the unthinkable happened – I didn’t make the A grades I needed. I was utterly devastated by this failure and painfully aware that it was a public one that would only confirm the beliefs of those who thought that applying to Cambridge was an uppity thing for me to have done in the first place. I decided to accept a place at my second choice university; Canterbury was a lovely place to spend three years. To this day, the view looking down from the hill-top campus onto the illuminated Cathedral in the centre of Canterbury (especially at dusk or dawn) has a special place in my heart.

As an adult with the benefit of hindsight, I can identify some key points on my getting-to-Cambridge mission where the odds were against me and things could have been done differently to improve my chances. I also know that, had these issues been addressed, I may simply not have been strong enough in all of my A-level subjects to get the required grades. For whatever reason, the BA and MA studies I’d go on to complete came much easier than my bloody A-levels and were significantly more enjoyable and productive for me (with the notable exception of Research Design & Methodology during my MA – my brain buffered the whole way through that one, despite very experienced expert/lecturers). The whole thing certainly taught me that it is possible to throw all your energy at something and still fail. What really matters is how you handle the feelings that failure generates and what you do next.

The whole ‘you can achieve anything if you work hard enough’ fallacy is especially unhelpful when it’s weaponised against disabled people. The idea that if you really try you can ‘overcome’ disability does far more damage, in my opinion, than it does good. Yes, any person’s life can be improved with goal-setting, targeted support and effort, whether they’re disabled or not. What hard work can’t do though, is miraculously make a disabled person able to function fully and succeed in our society in exactly the same way as abled people can. I should know, I tried. For many years I thought if I just kept trying and putting every ounce of physical and emotional energy into my teaching career, into seeming ‘normal’, I’d be able to hold onto it and do it well despite having a broken brain that caused debilitating daily symptoms. This was, of course, entirely unreasonable expectation to have of myself. I was so consumed by throwing every last ounce of energy at it, while hiding what it was costing me, that my ability to see my situation objectivity and logically abandoned me.

When my career was finally brought to a screeching halt 10 years in by my worsening condition, it was a far more devastating failure than the Cambridge debacle. It literally took years for me to fully process and accept it. Looking back, I wish I’d grasped sooner the reality that my hard work could not yield the same successful outcomes as abled people could achieve with less effort. And no, it wasn’t fair, but work environments and conditions in general are not designed with disabled people in mind. Both disabled people and said workplaces lose out as a result.

Sometimes we fail because the playing field isn’t level. Sometimes we fail because the target we are aiming for is an especially challenging one that simply cannot be attained by everybody who attempts it. Sometimes, we just don’t have enough of the qualities or talent required to win the particular prize we’re chasing.

If you’re disabled, there’s this additional truth to be considered – places of study and work, where most people pursue their career goals, usually have obstacles built-in that hold us back or keep us out altogether. Despite legislative progress, the truth is that the ‘accommodations’ we would need to succeed as our abled peers do are just not there. The political and social will (outside of the disabled community itself) to address this is nonexistent. Furthermore there are physical realities each disabled person has to live with that no amount of hard work or positive mindsets will change. For every Paralympic athlete there are many other disabled people for whom, for example, sitting upright is a challenge and always will be.

I don’t have an easy fix for any of this. The one thing I’ve taken away from my experiences is that we owe ourselves and the children we raise the truth – that while hard work is often an important element of achieving goals, it doesn’t always pay off in the ways we want it to or even in ways that are fair. If we fail, it’s ok to feel bad about it; then get back up again and identify projects/goals that you’ll enjoy pursuing and that give you the best chance of using your personal abilities or talents. Life’s too short for anything else.

What do you think – is hard work always rewarded? Has your hard work been valued less because you’re disabled?

Kindra

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6 thoughts on “Being Disabled: Success, Failure and The Lies We Tell Ourselves”

  1. I’ve lost count how many times I’ve had to correct people saying that ‘if you just keep trying and don’t give up’ BS to me. These days I simply say “They call it a ‘dis’abilty for a reason. A very realistic one.” I think re-adjusting our expectations is a necessary and positive thing to do. It means we aren’t flogging a dead horse and we can put more energy into what we can do. Going to Canterbury sounds amazing!

    Liked by 1 person

    1. Thanks for commenting, it’s good to know that somebody understands what I’m going on about! It’s so strange that we make a real effort to approach things in a sensible, mentally & emotionally healthy way and abled people tell us off for it. Not helpful at all!
      Canterbury is gorgeous 🙂

      Liked by 1 person

      1. Exactly! I’ve gotten so good at planning and weighing up options and compromising and being flexible compared to how rigid and anxious I used to be about everything going ‘right’. Maybe I will get there one day, slowly but surely, with lots of naps lol

        Liked by 1 person

      2. The main thing is you’re aware of how much harm it can do, trying to force yourself to have the same hard work = success equation as those who don’t live with disability/chronic illness. I wasn’t aware until I’d ground myself into the ground, so you’re ahead of the game 👍🏼

        Liked by 1 person

      3. When did you learn that you had disabilities/ chronic illness? I wasn’t diagnosed (I actually explained what I’d learned through online communities to the Dr’s, they had no idea what was wrong) until I was in my early 30’s. So in my teens and twenties I whole heartedly believed that I was capable of doing all of the ‘necessary’ hard work, if I just kept trying harder (when I was already trying harder than most people, even with very basic things I realised later). I hope so many people read your post and it gives them a wider and gentler perspective to find a balance and still value themselves. Going to share it on Twitter.

        Liked by 1 person

      4. I’ve had symptoms my whole life. By my teens it had been labelled as Migraine, by my 20s ‘Chronic Daily Migraine’. I had a great Neuro but it never occurred to him there might be something else going on. I just kept getting worse till I had to stop teaching in 2014. It wasn’t until 2015 i think that Chiari and sky high pressure inside my skull were discovered. Surgeries were needed to protect my sight, cognitive function etc and try to improve (as far as possible) the flow of CSF & pressure inside my head. I have to use a wheelchair now & am just starting to slooooooowly rebuild myself after years being house & largely bedbound. I don’t know if rebuild is the right word, since it’s more like starting over.
        The ‘wait, other people don’t deal with that?!’ revelations were probably starker & closer together I guess since the diagnosis was later? It’s v tough to have to advocate for yourself just to get an accurate diagnosis to work with.
        Thanks so much for chatting and sharing!

        Liked by 1 person

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