Today is International Day of Persons with Disabilities Day and I wanted to write this post, to share my experience of having what is termed a ‘hidden disability’. The thing is with hidden disabilities, is that, well, they are hidden, so you cannot always tell if someone has a disability or not.
Hidden disabilities are more common than you actually might think. Across the UK, there are millions of people within the workplace with a long-term health condition, impairment or disability that they may not talk about. In fact, of all the people with disabilities, a staggering 74% don’t use a wheelchair or any other device or support that may show the wider world that they have a disability.
I am one of those 74%. Unless I am naked, which isn’t very often thankfully, you would have no idea about my disability. For over 30 years, I have suffered with Crohn’s disease, a debilitating and extrmemely painful disease of the bowel. I have had 4 open surgeries, several closed surgeries, a temporary colostomy and more recently a total pan proctocolectomy, leaving me with a permanent ileostomy and a barbie butt (I dare you to google it!). What’s more, Crohn’s disease brings with it a whole host of other side effects, such as arthritis, impaired immune system, cognitive dysfunction, extreme fatigue, mouth ulcers, joint pain and much more. Whilst I can feel all of this, the people around me cannot see it and unless I gave you a flash of my ileostomy (which I have been known to on occasion) you would never know!
I have never allowed my disability to define me and Ive certainly not allowed it to stop me enjoying my life to the full, and developing my career in early years. That said, when you have to explain a disease that involves bowels, ileostomy bags, stomas, diarrhea and the potential of not making it to the toilet in time, it can be very difficult.
The great thing about working in early years is that we talk about poo quite a lot. Most early years professionals I have worked with have a poo story or two to tell, so explaining that I poo into a bag on my stomach, and will likely need to empty it at the most inconvenient times, doesn’t usually phase them. In fact, the odd few have even sheepishly asked if they can have a look!
This is all great once you are in a trusted and open workplace, however, when you are applying for new roles or starting a new position it’s not so easy.
“Hi, I’m Kelly, I start work with you today. Can you tell me where the toilet is please and where I can store my ileostomy supplies?”
It’s not really the first thing you want to talk about, but often it’s the most important thing on your mind!
Even during the recruitment process, theres an internal battle…
Should I put my disability on the application form…..?
No, it will put them off and they may disregard my application….
But if I don’t then when I tell them about my disability, I’ve not being honest and open on my application….
But if I do tell them they may judge me before I’ve even met them….
It’s an endless battle. For some applications I have been open, for others I haven’t, and I don’t truly know whether my honesty about my disability has been a positive or negative influence on the outcome. Let’s face it, no employer is going to tell me that Ive not been successful because I have a disability and they are worried I may take too much time off, but I feel sure it crosses their mind!
What I do know is that my experience of having a hidden disability has made me more aware of the barriers faced in a workplace, and how to overcome some of these barriers to really support people with hidden disabilities.
Having a culture of open communication is a great starting point. That’s not to say that everyone in the setting needs to know all the gory details, but having a leader who understands and can offer support when you need it is so important. Recent research by Crohn’s & Colitis UK suggested that over half of employees with a long-term health condition feel they must downplay their condition at work, and a third will lie about the reason they’re off sick. Regular supervisions and health and wellbeing meetings can ensure that everyone has a space to talk, as well as a confidential opportunity to discuss their workplace needs, and any challenges they may be having. It may also be useful to have a little code word or phrase to help people do what they need to do without any fuss. For example, when my ileostomy needs some attention, I usually say I need to empty the tank. Those that know me know I have to go to the bathroom straight away, those that don’t are left baffled as to what tank I’m emptying! Cruel, but funny none the less.
Ask anyone with Crohn’s and they will tell you that one of their biggest frustrations is having their disability compared with a tummy upset or IBS. Now, I know that IBS can be horrendous, however it is totally different to Crohn’s, and its frustrating when people feel they know all about the illness you have lived with for years because their cousin’s girlfriend’s best friend had it! Educating yourself as a leader and the rest of the team on hidden disabilities in the workplace and how to support others, is a great way to improve the culture and the experiences of your team. Helping your team to be more aware and better educated on common hidden disabilities can help to create a more understanding, open and supportive environment to work in.
A culture of being valued and respected for your work allows team members to feel supported and will lead to increased productivity and reduced turnover. What’s more, ensuring that employees with hidden disabilities feel valued and have their work recognised will encourage them to be honest about the support they need. We know that a little recognition goes a long way, a simple, well done or that looks great, can be all you need to make someone’s day!
Working in early years means being in the nursery and generally working long hours. Unfortunately, it’s not really a job you can do from home unless youre a childminder or nanny of course! But there can be a degree of flexibility when it comes to supporting team members with hidden disabilities. Employers have a duty to make reasonable adjustments to enable employees to carry out their role, however, just some simple adjustments can make life easier. For example, offering to reduce hours for a short while during a flare up, moving them to a nearer site for a time to reduce travel time, or something as simple as a hot water bottle in the staff room during a break can make all the difference. Providing an Employee Assistance Programme, can also be a valuable offering for employees who may have anxiety or worries regarding their condition at work.
Just because I have a disability doesn’t mean I can’t laugh about it! I recall an episode of Eastenders where Sharon said that Phil was ‘Stuck to me like a colostomy bag’. I found that hilarious and loved that awareness was being raised along with some humor thrown in. There are going to be tough times, so we have to balance that out with humor and fun. Knowing that we can laugh in the face of adversity and have a giggle when things get tough can make even the most challenging times seem a little brighter.
So, for our leaders out there. Embrace the chaos, be open to the needs of your team, and don’t be afraid to talk. You can’t presume to know what support someone needs and often, their needs will change depending on their disability.
For those with a hidden disability, don’t hide it too much! Be open with those who can offer you the support you need to do a great job. Your disability doesn’t define you!