10 Things I Wish Employers Knew About Disability

By Jessica E-Liz, The Powered By Diversity Collective

1. CATEGORIES OF DISABILITY AND CREATING AWARENESS

From an awareness perspective it’s important to be conscious that there are both visible and hidden disabilities. My disability is hidden and so I am coming from that perspective. Whilst there are similarities in the challenges that people face, there are also a few fundamental differences, namely:

A visible disability means that often a person is judged based on this, from the second they come into contact with someone else (whatever that judgement may be). They can never be ‘the person who isn’t in a wheelchair’ (for example).

One of the things I really appreciate about having a hidden disability is that I don’t necessarily need to disclose it. For example, I am single and dating currently. I usually won’t tell somebody about my disability until we’ve been out at least a handful of times because I want them to see that there’s more to me. This is a luxury that somebody with a visible disability doesn’t have. 

On the flip side a hidden disability means that people often forget or don’t consider it, because it isn’t immediately obvious. In my experience ‘people’ can include friends/family/those who know me the best let alone strangers and that can lead to frustration for them (if I can’t keep up on a particular day for example) and for me. 

Another consequence of the above is that people feel able to ask you to do things that you can't because they don't visibly see the impact it would have on you. For example I can appear fine on the outside but if I block time to sleep - it's so that I stay that way. Just because I present “just like you” on the outside, doesn't mean I'm not using all my energy to make that happen at the conscious expense of the rest of my day. Listening is so important and can lead to avoidance of people being unfairly branded (with terms such as lazy for example).

A lot of the words used to describe symptoms experienced by those with hidden disabilities are also standard terms used by everyone to describe day to day events. For example, ‘fatigue’ and tiredness; these are things most people can relate to and they tend to bring certain scenarios to mind. I have had people talk to me about jet lag, hangovers and sleepless nights due to having a young child. While I appreciate that this can give people a perspective to some extent, they just don’t realise what they can’t see. I might join a work call and be full of ideas and contribution but straight after I will likely crawl on all fours back to my bed to rest; that’s what I mean by fatigue. 

2. INSPIRATION VERSUS RECOGNITION

Nobody with a disability wants to be told they are inspirational just for getting out of bed. However, I would like to see a level of recognition that basic things are often harder for those with a disability than they are for an able bodied person which does mean that the achievement is sometimes greater. 

I find myself constantly comparing myself (detrimentally) to able bodied people, and being left wanting.

With disability it’s about redefining our measures of success/defining a new normal. I don’t necessarily think that this is something which should be entirely an employer’s responsibility; I think they have a part to play, as does the whole of society. 

I often really beat myself up about what I’m not achieving and I find it helpful to have those trusted people around, to remind me that I started a number of rungs below my so called ‘peers’ and effectively had my feet tied together, so, actually I should be proud of myself for what I have managed to achieve. 

Whilst that doesn’t make me an inspiration, it does reflect the realities as they are for me now.

3. UNDERSTAND CHRONIC ILLNESS 

Chronic illness often doesn’t fit into the standard definition of disability, given that it fluctuates. People with chronic illness can go for many years without a problem, and then have a flair up out of nowhere which completely floors them. 

Chronic illness can have significant psychological impacts and actually a lot of the treatments now focus on psychology (using techniques such as Cognitive Behavioural Therapy). One of the biggest psychological challenges I’ve faced is that I often think I can “just push through” my symptoms (and I am aware that others think this about my disability too). When your disability fluctuates constantly it can be very confusing and I often push myself too far, for which a price must be paid later. 

The issue is that just because you were able to physically do something yesterday it doesn’t mean that you can today. That’s a very difficult thing to accept yourself, let alone asking others to accept it.

I find this clip of Miranda Hart talking about chronic illness particularly pertinent.

4. VIEW DISABILITY AS A SPECTRUM

There is a vast spectrum of disabilities and a variety of challenges that can be faced by disabled people. People with exactly the same symptoms may or may not class themselves as having a disability and people with the same disability can have vastly different symptoms which can be “minor” - or much more significant. That can mean that the same terminology is used for individuals whose experiences of a disability can be very wide ranging.  

As much as able bodied people may find it hard to understand disability there are psychological impacts on the disabled person too. They may be battling with their own frustrations and expectations within a society that doesn't cater for/accept them. Where people may have unreasonable expectations of somebody with a disability through lack of understanding or subconscious bias, the individual with a disability may have similarly unrealistic expectations for themselves. 

I once had the perfect job and the reason it was perfect wasn’t the work itself, it was the great partnership between my manager and I. He understood my disability but crucially he also saw my ambition. He knew I didn’t want to “let him down” so I would sometimes take on too much and suffer for it later. He would be watching out for that and was prepared to challenge me on it, just to make sure I was being responsible in taking on extra work.

Beth, Events Manager

5. UNDERSTAND FLUCTUATIONS IN WELLNESS 

Another area that I wish employers were talking about is the guilt which can be felt by the individual at work and the need to apologise for their limitations. I personally feel so much guilt a lot of the time and the need to over explain/justify myself.

For example if I need to leave the office early one day due to fatigue I’ll feel horribly embarrassed if I’m much better and want to go out for work drinks the next. Often I feel like I have to turn them down and go home just to be seen to be doing so (from an acceptability standpoint). In fact from a psycho-social point of view, joining in the fun things is a really important thing in managing your disability. 

When chronic symptoms get bad these fun things are often the first things to go (life becomes all work and no play) but that can produce a negative cycle, as mental health starts to suffer and in turn further impacts the physical health. I think improving awareness would hopefully prevent individuals from being stigmatised and make this fluctuation more acceptable for the person as well as the employer.

6. THINK DIFFERENTLY ABOUT SKILLS

An area that I feel hasn’t particularly been recognised to date is the skills that those with disabilities might have developed to help them function in a world built for the able bodied. Both those with disabilities and employers have a responsibility to recognise these skills as the valuable assets they are. 

People with disabilities often don’t think about it from this perspective; they might not think of themselves as problem solvers for example because ‘that’s just life’ for them.

Often these abilities (or the way they are demonstrated) means they're not recognised as such. 

There are so many skills when one starts to think about it; prioritisation skills for those with limited energy, resilience to keep battling in a world that doesn’t cater for your needs. I would also go further than this and say that there are skills which aren't recognised in the job market, but should be. For example the patience that is required for someone with a disability to navigate daily obstacles often isn't recognised as a skill which would almost definitely be applied at work. 

Looking at the abilities that come from being disabled could be a great way that employers can ‘think outside the box’ in terms of what skills they’re actually looking for, rather than searching for the same examples each time. 

7. PROGRESS PEOPLE WITH DISABILITIES AS YOU WOULD ANYONE ELSE 

It is all well and good making the workplace accessible to those with a disability so that they can come into an organisation but are they fairly seen and recognised once they are there? 

I often worry that organisations reward themselves based on representation at base level but I think they need to look at how people progress too. This is something to be looked at within organisation, and measured. 

It would be interesting to see what the stats are in organisations around progression for employees with a disability. Unconscious bias, being overlooked and being told what you can't do by those around you is somewhat outside the person’s control but these can also work together to erode the disabled employee’s confidence and lead to lack of confidence in a person’s ability to progress, becoming a self fulfilling prophecy.

8. LOOK CLOSELY FOR STAGNATION THROUGH FEAR

A person with a disability won't necessarily make demands - or leave - when they’re not recognised/rewarded fairly (as an able bodied person might). There is often a real need to balance their aspirations against the practical demands of their health which can mean that they stay in organisations longer where they have built a relatively safe environment rather than fighting the fights again elsewhere. 

Anyone feeling undervalued will recognise how demotivating it is, and particularly for somebody with a disability. This can have a detrimental effect on their feeling of self worth and a negative impact on their health.

9. INSTIGATE DISCUSSIONS ABOUT ADJUSTMENTS

A person with a disability won't necessarily ask for the adjustments that they need. This could be because they assume certain things aren't possible (they are used to struggling through) or that they don't want to mark themselves as different. They may just have come to believe that society is structured in a certain way and so haven't even considered how changing things could make working life easier for them. 

In these scenarios having a safe space where a person with a disability can discuss how this affects them with an expert in that field could be helpful; somebody with knowledge and experience in this area who can aid the individual in thinking differently about what is possible. 

It’s important that the organisation participates in these discussions independently too. Truly understanding the disabilities of your employees may help you to spot adjustments that could be made for them, without them having to ask. 

10. OFFER SUPPORT AS AN ONGOING RESOURCE, NOT JUST TO GET EMPLOYEES BACK TO WORK

I was off sick for three months due to my disability a couple of years ago and during that time I was put in touch with a nurse from Occupational Health who was brilliant. Her remit though was to transition me back to the workplace. She consulted on how to do this and what I needed. Having her thoughts and experiences was invaluable from my perspective, but once I was back in work that resource was gone.

I think having a consultant that people with disabilities could speak to at any time would be hugely helpful. This would have to be somebody not just aligned to the organisation but to act as an intermediary between the two. This person could advise about adjustments and facilitate constructive conversations when things aren’t going so well. I think it would mean people felt able to speak up more quickly. For me, having somebody I could call when I wasn’t sure how to manage a situation, knowing I could speak in confidence without reprisal, and her helping me navigate situations as they presented themselves was so beneficial. 

From an employer point of view also it could stop people suffering in silence and potentially ignoring situations until their health is adversely affected and they have to go off sick; certainly in my case having this resource to help me meant I was able to get back to work sooner and without relapse.

Jessica works in digital. She has had a passion for promoting change around areas of diversity ever since university when she was first diagnosed with having narcolepsy, a rare long term neurological disorder. Navigating her own challenges associated with having a chronic illness helped her better relate to others and in turn to understand the challenges facing them. Jessica has presented to diversity boards and sat on working groups at a wide range of organisations. She believes in an inclusive society and thinks it is important to use her voice and her experiences to make things better for those who come after her.