If someone uses a wheelchair, is an amputee, or carries a cane, it can be easier to understand the barriers they might face and how to support them at work. For those with invisible impairments and conditions, such as mental health conditions, chronic pain, sight loss or autism, it’s often a different story. Colleagues may not spot the challenges they are experiencing, and may find it hard to comprehend, or believe someone, with a “hidden” impairment genuinely needs help.
Millions of people work with invisible disabilities they rarely talk about. Here we look at some of the reasons why, in the current day and age, many people still do not feel comfortable sharing their disability with their place of work. And how employers must start to change this narrative.
Perception, the wrong perception?
There is a perception that having an invisible disability impacts your chances of being hired, keeping a job or being promoted. It’s often easier for someone to hide, or mask their condition, than to let on that they may need their disability to be taken into consideration, would like some simple understanding and empathy or adjustments made to their working patterns or environment. One wearer told us:
“I was once given a verbal warning about my autistic traits. When I declared that I had autism and that the behaviour disciplined was due to my autistic traits (as confirmed by my university advisor), my employer did not remove the warning and it remained until the 6 months lapsed. I ended up leaving the company due to stress and anxiety because of this incident. Furthermore, since declaring autism on job applications, I have either been unsuccessful in gaining an interview or have failed the interview. Whereas before, when I didn't declare autism, I had interviews for nearly every job I applied for... Now I struggle to even get an interview, I consider hiding my autism but I feel like I would be lying to my potential employer if I did that.”
“There is a strong fear of disclosure in relation to stigma, bullying and condescending behaviour appearing as a result.”
This overriding fear of other people's reaction to a person having an invisible disability or illness is sadly, something we heard a lot during the research for this article:
“Staff bully me in every job I've ever had. This frightens me when I go to work the next day.”
Back in April 2021, we conducted an autism employment survey. Only 44% of our survey respondents had told their colleagues about their autism. This was in the main because of a fear of workplace bullying. 66% of the same survey felt judged at work as a result of their autism, with over half admitting to having experienced verbal abuse at work for being autistic.
“The reaction of my employer when I was diagnosed with autism and shared this with them was, firstly, to try to deny my diagnosis through Occupational Health meetings and then to raise spurious disciplinary proceedings against me, for not following instructions properly. It took four years of fighting through the grievance procedures (with very poor union support or understanding) before I received a formal apology and agreed accommodations for my disability were put in place. Even after that, and despite the fact that I have asked my employer to keep my disability confidential, and despite being told by my managers that my work is well above average, I still have colleagues who tell people that I use my disability to avoid doing my work properly.”
In addition to a fear of colleagues knowing about someone’s non-visible disability, the fear of losing your job is also present. Alongside fears of being treated differently and the employer telling other people.
“I don't want to be a burden”
In the UK, disability is covered by the 2010 Equality Act, which ensures various protections, and requires employers to make “reasonable adjustments” in order to remove barriers to work. This might mean adapting work hours so the employee can avoid rush hour, or allowing leave for medical appointments.
Our autism employment survey revealed that despite 63% of respondents having told their employer about their autism, only 34% of employers had made any reasonable adjustments, even though this is a legal requirement. One could argue that if reasonable adjustments are not being made, what's the benefit in sharing your condition with your employer?
The world undertook the biggest reasonable adjustment overnight when COVID-19 hit – moving people to home working. This has been of huge benefit to disabled people. As sited in our survey, the most common reasonable adjustment that has been made for our autistic wearers is flexible working. So, do we consider this a bid to remove barriers to employment for an autistic person, or simply a natural result of the pandemic, that everyone is benefiting from?
Some employers did, however, go further, making adjustments to the working environment by providing ear defenders, a quiet desk, or low-level lighting as well as holding more frequent meetings with their employee. These are easy adjustments for an employer to make, that have a profound effect on how an autistic person's day plays out.
“For a long time, I didn’t know I was autistic and couldn’t understand why I found office life so much harder than everyone else. Now I see how many simple accommodations could have made my experience better and avoided the bullying I have experienced from co-workers.”
Lack of understanding and empathy
Despite 63% of respondents to our autism employment survey, having told their employer about their autism, almost 50% of respondents felt that their employer did not understand the challenges that they face at work – and a further 20% were neutral on this question.
If you don't feel like your employer understands or empathises with you, what's the benefit in sharing your condition with them?
“I shared the information about my brain injury at work back in 2014 and am now stuck in a weird position of not being allowed back in because of my aphasia. While yes, aphasia isn't perfect, there are so many tools to help with reading, writing and even talking if needed. It's easier for companies to remove their employees who have disabilities rather than realise that they still have multiple skills behind the visible things that they can see. Let's hope that disabilities soon catch up with some of the other discriminated against, minority groups that have recently moved forward.”
There is clearly more that employers could be doing in terms of empathy, awareness and understanding.
Some employers are getting it right
“My name is Alison. I am profoundly Deaf and a British Sign Language (BSL) user.
I am the British Sign Language Development Officer at the University of Edinburgh. Before I even started my job the University was already aware of my needs as I am profoundly Deaf and worked with a BSL/English interpreter for the interview. My line manager was part of the panel for the interviews, and when I was offered the role he got in touch with me almost immediately, asking what support I needed. I was able to tell him right away that I would need BSL/English interpreters so that I can effectively communicate with colleagues who do not know BSL. Over time as we got to know one another and understand how each other works, he would check in with me every so often and ask if there are any adjustments needed. Especially with COVID19 and the requirement of masks in most places, he is aware that this is something I am anxious about because I need to lip read people to understand what is being said. I wear my Hidden Disabilities Sunflower lanyard at work to remind people that I am Deaf / have a hidden disability as my speech is quite good so people can forget that I find it difficult to communicate if they have a mask on or look away.”
My experience as a whole in my current role has been really positive thankfully.”
What can employers do to change the narrative?
In order for people to feel able to share their invisible disability with their employer, the culture needs to change. Starting at the top of the organisation, disability inclusion needs to be a part of company policy, form an actionable business objective and ensure that policy then drives company culture. Empower line managers, train them! Employers don't have to be an expert, there are many organisations out there to help.
We need to normalise disability in order to encourage disclosure, as Mike Adams from Purple suggests:
“You have to create the conditions under which people feel able and safe to disclose. A chief executive of a fairly big organisation that Purple work with, have been working on disability inclusion for the last six to eight months. They ran a virtual, TGI Friday session. The CEO was talking about the work that the organisation was doing with Purple on disability. And at the end he said, "Look, has anyone got any questions?" And about 10 seconds later someone came off mute and said, "I cannot believe this, but I've been here 20 years and after what I've heard for the first time in my life, I'm going to tell everyone at work that I've got a hidden disability." And then 10 seconds later someone else said, "I can't believe it either, I'm telling people that I'm on the autistic spectrum." And this was quite a senior manager. And then someone else said, "I've got dyslexia".
“And within six minutes he had six people who had disclosed. And why? Because he had created the conditions and the culture where people felt able to do so. And so, I think disclosure is incumbent on the organisation and not on the individual. And if the organisation get it right, disclosure rates will automatically go up. And if disclosure rates go up, I will always say it's your biggest marketing tool because people will smell it. People will see it. And then other people will go, "well, I want to go and work for that organisation." And that's where I stand on disclosure.”
Matt Putts from Employment Horizons concurred:
“Disclosure is tricky, it has to be what the person with the disability is comfortable with. And if a company has that culture, that's ultimately the goal. You want to create that culture from the top down, where diversity and disability is something that's more than a checkbox on a form. Where the senior leaders in the company are conveying that this is of value. This is something that we, as a company, value and it is safe to disclose here, we want to know. We value you and your contributions because we are all working with people with disabilities, whether you know it or not!”
How the Hidden Disabilities Sunflower can help
The Hidden Disabilities Sunflower is here to increase awareness of hidden disabilities. By wearing the Hidden Disabilities Sunflower, people can indicate to their colleagues that they have an invisible disability and break down barriers without having to have a conversation about their condition. The hope is that the Hidden Disabilities Sunflower allows people to feel more comfortable sharing that they have a non-visible disability.
"I had to leave my previous job because the conditions were unsafe and having a mild learning disability didn't help. Looking back, I really wish I had worn a lanyard. My boss did the best that he could and was generally very kind and supportive and tried to understand, but because of my learning disability he would criticise me at times for forgetting bits of information. Customers could be nasty and judgemental too. It's situations like that where I really wish I had the lanyard and card, that way I could show people, and help them understand my learning disability."