In a departure from my usual topics, this entry focusses on disability in the workplace and beyond.
I would like to clarify upfront that I personally do not consider myself to be disabled. I have three conditions which render me ‘less abled’ in certain situations, and usually for a limited period of time (symptoms could present themselves for anything from days to weeks at a time). This puts me in the rather unusual position of being entirely ‘able bodied’ one day, and clearly ‘less abled’ on other days.
For the sake of context, I have Spinal Osteoarthritis, a Spinal Disc Herniation, and Joint Hypermobility Syndrome (JHS). These conditions manifest themselves in my inability to stand up for long periods of time, and my profound discomfort in sitting in seats and positions that others find perfectly acceptable. On occasions where I have no choice but to be in an uncomfortable position (for example, on a busy train), I will experience a significant amount of pain and discomfort, often rendering me incapable of walking independently for the next few days, at which point I would require the use of a walking stick to remain mobile. Unless I am experiencing a flare up of this nature, there is no indication that I am anything short of entirely able-bodied. My most recent (and ongoing) flare-up was caused by flying to Prague for an award ceremony. Queuing in the airport, as well as a standing drinks reception was all my spine needed to call a time-out, and it has taken me two weeks to get back on my feet.
Following my full diagnosis in 2011, which involved a rheumatologist, a handful of GPs, a physiotherapist, and 5 years of blood tests, X-rays and MRI scans, I have almost entirely come to terms with what my conditions mean to me day to day. I have made my peace with the fact that I can’t go rock-climbing, or run marathons, or exercise enough to have the body of an athlete. After years of trial and error, I have devised approaches to most situations that suit my particular needs. I can’t have long lie-ins (as my back will start to seize if I remain inert for too long), and I politely decline any social event requiring prolonged standing (music festivals, fireworks displays etc) to avoid rendering myself immobilized in the days and weeks that follow.
Unfortunately, no level of personal planning can control the actions of others, and so the behaviour of others is often the cause of derailment. A symptom of JHS is ‘brain-fog’, which can make you feel exhausted after very little activity (see spoon theory for more information). This exhaustion, combined with other common mental symptoms of mobility issues – stress, depression, anxiety – can cause basic human interaction to become an overwhelmingly rogue element in the midst of an otherwise carefully planned day. To be forewarned is to be forearmed, so here are some tips, either as a stranger, employer, or less able bodied individual, to help tame the rogue element.
How can you help as a colleague, friend, or stranger?
Be sensitive with how you express your sympathy. I’ve lost count of the number of people who have responded to an explanation of my diagnosis with, “Oh, that’s awful! That’s really rubbish; I’m so sorry”, or those who have made incredibly condescending ‘sad faces’ at me. I know the sentiment behind this is well meaning, but considering my conditions are chronic, the only purpose this serves is to make me feel sad about it myself. If someone breaks their leg, that’s a bit shit and often unlucky, but short lived. Considering I have a chronic condition that will continue to affect my mobility intermittently for the rest of my life, it’s something I am required to actively manage and accept. I can’t afford to sit around wallowing, so please don’t act like the rest of my existence is doomed, because quite frankly, this is the only existence I’ll have.
Don’t question someone else’s diagnosis. As my conditions are largely ‘invisible’ (by which I mean it is not immediately evident that I am less able, unless I am experiencing a flare up), others often seem to think it’s appropriate to undermine my diagnosis. For example, the best way to explain JHS to others, is to demonstrate an example of my joints bending further than they should (this is due to a collagen defect which prevents my muscles from holding my joints in place correctly). Nine times out of ten, the person I’m speaking to will attempt to copy my actions, and if successful, will say, “Well I can do that too*.” I’m never entirely sure what the intent behind this comment is, but I’m perpetually hard-pushed not to interpret this response as an accusation of dishonesty or exaggeration on my part.
*Many people are ‘hypermobile’ – this is the true term for being ‘double jointed’ – however the diagnosis of hypermobility as a syndrome only applies when the condition causes pain in the individual. For this reason, many of the people I encounter can bend in the same unnatural way that I can, but it causes them no pain. Individuals who are ‘hypermobile’ without the ‘syndrome’, often go on to become ballet dancers or gymnasts, which further exacerbates the disbelief that hypermobility can be a painful and debilitating condition.
Don’t stare. You wouldn’t stare at a stranger on the tube in ‘normal’ circumstances, so please do not stare at me and my walking stick on the Northern Line, trying to work out ‘what’s wrong’ with me. If you’re that intrigued, then ask. If you’re not bothered enough to enquire like the human adult you are supposed to be, I assure you that you won’t gain any insight from looking me up and down. By the by, I have a spinal condition; my sight is fine. Please be under no illusion – I can definitely see you staring.
Help, without ceremony. Whilst I was using my walking stick a few weeks back, I went into TKMaxx to pick up an online order. A member of staff saw me standing with my stick, finding my order confirmation email on my phone. He came over and asked if I needed anything, and then took my order number to go and find the item whilst I headed over to the (sizeable) queue. Once he had returned with my item, he gestured to an empty till and said, “Would you like to come down here, and I’ll sort this out for you?”. He didn’t ask questions, stare, or shout about it over the heads of all the other customers queuing; he simply recognised that I was having difficulty standing, and made arrangements to help me avoid it. I found this to be an incredibly sensitive method of managing the situation and genuinely felt (and still do feel) very touched by his behaviour.
Remember, it’s the little things that count. During the recovery from my incapacitation, a friend dropped over his tiny lightweight vacuum cleaner so I would be able to tidy the house with ease. He also took a full rubbish bag downstairs for me (as I live in a maisonette) and gave me a lift to my out of hours GP appointment when I was unable to drive. I also received offers to source and deliver groceries, provide chauffeur services, and cups of tea on demand. Several friends came to my house for the evening just to watch a film and keep me company, overriding the much more exciting plans we’d made previously, without complaint. I maintain the fact that having a cup of tea made for you during times of trouble is quite possibly the greatest comfort of all, so please don’t assume there’s nothing you can do to help.
How can you help as an employer?
Let them get on with it, as much as possible. If you have an employee with a condition that means they need to do things a little differently, please don’t question their approach, especially in front of others. They may prefer to take the stairs or use the lift, depending on whether standing still or walking up steps is more comfortable, and some tasks that you carry out without a second thought may be damn near impossible for them. Although some of their methods may seem counter-intuitive to you, please don’t question them or make them explain their choices. The individual in question has likely honed their approach to numerous day to day challenges over a long period of time, and your input – however well intended – is unlikely to prove revolutionary. There is no need to question the management of one’s medical condition, any more than there is a need to question parenting techniques or religious preferences. It doesn’t affect you or others, so leave them be.
Be flexible. I am lucky enough to work for an absolutely incredible organisation (shout out to the team at Mindshare UK), who allowed intermittent sick days / working from home days for two weeks whilst my spinal condition rendered me unable to commute into the office or sit upright. My manager arranged for my laptop to be delivered to my home address so I wouldn’t feel compelled to struggle into the office before I was ready, and she continues to trust my judgement and allow me to go about my day in any manner I see fit. At a time when I am physically incapable of something as simple as waiting for a bus, standing up long enough to prepare a meal, or carrying my own laptop, the ability to continue to contribute to the team in any capacity I can manage is absolutely invaluable. The option of continued involvement was genuinely the only thing that stopped me from feeling entirely destitute, following the best part of a fortnight spent exclusively in the foetal position.
Give them the benefit of the doubt. As mentioned, the nature of my condition means that some days I will seem completely able bodied, and then the next day I could be unable to walk unaided, if at all. Ever since the condition presented itself, I have experienced something akin to ‘imposter syndrome’; feeling incapable of fully identifying with those who would consider themselves ‘disabled’, but also not able-bodied enough to be completely ‘normal’. Receiving pressure to ‘prove’ that you’re having difficulties is tantamount to abuse, and is something that no one should ever endure. If you, as an employer, don’t believe that an employee is facing the challenges they claim to be facing, there is clearly a wider issue at play regarding your trust in that individual. Regardless of the situation, any employee is entitled to self-certify sickness for 7 calendar days before requiring a note from their GP.
What can you do as a less abled person?
Remain open to questions. I know this is often easier said than done, and it will of course depend on the nature of your condition and whether you’re comfortable to share details. One of the best ways to collectively raise awareness and diffuse the stigma of invisible and visible conditions alike, is to be more open about discussing them. Even if you would rather not deliver an impromptu lecture, please try not to respond defensively to innocent enquiries, as this will only increase the taboo around the conversation, and discourage that person from broadening their knowledge in the future.
Be polite. Let’s be honest – although I’m sure the vast majority of people will offer a less abled person assistance purely out of kindness, there is an argument to be had around no good deed being genuinely ‘selfless’. If someone helps you, say thank you. Smile. Do what you can to ensure they recall that as a positive experience to encourage them to do it again in the future. If you don’t need assistance, please try to appreciate the sentiment behind the offer and avoid unfriendly responses. Even if someone seems uncomfortable, or stumbles around the issue, this is generally out of fear of saying the ‘wrong thing’, and comes from a place of decency. Please try to at least respect the intention, if not the delivery.
Be honest to employers, friends, and family. If you are consistently transparent with your employers regarding your capabilities and limits, this will make for a much smoother dialogue when flare-ups or issues arise. If friends and family are made aware of any challenges you experience, they won’t take exception to you cancelling arrangements on the occasions when you’re not feeling up to it. This will also help to arm everyone with the knowledge they need to make arrangements that suit you, and enable you to participate more actively. Hiding symptoms, or struggling through difficult or painful situations alone can be incredibly isolating; transparency helps you to build a support network to avoid the feeling of exile. Making the people around you aware of your situation can also help to address or avoid the mental health challenges that can often arise as a result of physical disability.
Need advice? Scope is a fantastic charity that aims to ensure disabled individuals have the same opportunities as everyone else. You can call them on 0808 800 3333 if you need more information.
Pea Pea Sea Digital Consulting 