1. Despite awareness raising campaigns, policy, legislation and the fact that almost 14 million people in the UK have some form of disability, there is a lack of understanding and effort to understand disability in the workplace - likely fuelled by austerity and polarisation of disabled people in the media as either benefit scroungers or inspiration porn. Although disability is widely recognised as something imposed externally by society, it is still largely regarded as an individual failing or problem for the individual to solve.
[Disability] is still largely regarded as an individual failing or problem for the individual to solve.
2. Getting understanding or reasonable adjustments at work relies on “disclosure”. It’s hard to know if/when, how and to whom to disclose your disability. This is especially true if you have a condition that’s new or not obvious or visible to others.
3. If individuals don’t speak up they can’t get the support they need for their well-being but if they do, they make themselves more susceptible to discrimination, bullying and harassment. This happens.
4. Even if you declare a disability during the recruitment process it’s not always clear how or if information is passed between HR and managers making repeat conversations necessary. Those conversations can be difficult, especially when you start a new job.
5. The myriad conditions disability encompasses are rarely straight forward or easy (or necessary?) to explain.
6. “Disclosure” makes it sound like you’re telling secrets, shameful secrets.
Successful disclosure relies on engagement
from your employer.
7. Successful disclosure relies on engagement from your employer. I had a manger who thanked me for telling them and reassured me I had done the right thing but then did nothing as if they thought I was under obligation to tell them (why?) and not that there was an obligation on their part to provide support.
8. The disabled person has to then ask their superiors for understanding or adjustments when there is already an imbalance of power at play. This puts the disabled person in a uniquely vulnerable position, ripe for abuse in the wrong environment. The employer decides if you are disabled enough to warrant adjustments and they become gatekeepers to your well-being. My disability and adjustments (despite being established in my previous role) were repeatedly questioned and denied when I moved jobs.
[We have] to prove our capability and disability
at the same time.
9. And so we are put in the precarious position of having to prove our capability and disability at the same time. This is basically impossible.
10. If it is not forthcoming, individuals have to advocate for themselves to get the support they need and are entitled to by law and they often have to educate others in the process about disability and policy. It puts an extra burden on the disabled person and some managers don’t appreciate their authority being challenged in this way.
11. The reasonable adjustment duty is supposed to be proactive, but employees can be left to come up with specific adjustments themselves even when they don’t have the experience or authority to agree to them.
12. Conversely, our expertise on our own health is disregarded and we are forced through medical and occupational health appointments, or legal definitions of disability, before we can get recognition from work. I also had to lodge a grievance before any action was taken, further entrenching the conflict with management.
13. If the process is drawn out, it runs the risk of making your health worse and working-life more difficult. For me, it was stressful and time-consuming when the primary aim of disclosing my condition was to better manage my health and workload. Something that is supposed to be empowering makes you feel more disabled.
14. There is still a prevailing attitude that people asking for adjustments are lazy, opportunistic, or entitled. The idea that we are trying to get some sort of unfair advantage is harmful because it betrays a gross misunderstanding of Equality legislation or mistrust. I have been accused of abusing my disability for wanting to know if I could reduce my hours at the same time as my disability has been blamed for confusing things, which is confusing.
15. Further, disabled employees are constantly reminded of the need to be fair to other staff when that is not at stake. I was willing to take a pay cut to reduce my hours for the benefit of both sides but still made to feel like I was seeking “special treatment” and told they didn’t want to “set a precedent” for other staff.
...often all employees need is a level of understanding or a bit of control
over their own lives.
16. Despite the name, there is a misunderstanding that ‘REASONABLE adjustments’ will be complicated or expensive, when often all employees need is a level of understanding or a bit of control over their own lives. What is reasonable is ultimately for the employer to decide, and there are many things employers can do to make the workplace more inclusive for everyone regardless of whether or not they are disabled e.g. staff training, flexible working policies.
17. Large organisations are so eager to promote EDI that they repeatedly fail to implement it, which only reinforces the alienation. I have had to go to various EDI training sessions in which I can’t fully participate. I attended one meeting in which non-disabled staff were asked to pretend to be deaf and blind as some bizarre kind of demonstration about inclusion while my own hearing impairment and requests for understanding were being ignored.
18. Disability makes other people uncomfortable. There is a fear of saying or doing the wrong thing which prevents them from using common sense and doing anything useful.
19. On the other hand, some businesses are more concerned about their reputation than the individual which can create a conflict of interest. If employees complain or mention discrimination, employers are quick to shout it down, presumably through fear of litigation. I have been called “difficult” for speaking up and also not “pushy” enough regarding reasonable adjustments. Aaaghh.
20. Managers have so frequently tried to demonstrate empathy by comparing my situation with their own entirely different situation - or their mum who has the same rare condition, or their brother in a wheelchair, or by reassuring me they have used Google and are now a medical expert - that they fail to engage at all, and I become paranoid about the twilight zone in which I am now existing.
21. I don’t want to have to make a point of being disabled, but I also don’t want to be excluded from meetings, professional development, or having a work/life balance due to something I cannot control. We have to mark ourselves out as different to be included, and fight to be heard when we are already exhausted.
This blog was submitted by an Anonymous Jason's Connection Community Member Blogger who writes about her experience with Meniere's Disease in relation to getting support and understanding. She is keen to raise awareness of the illness and the societal problems encountered with hidden disabilities such as MD. Read more at https://medium.com/@starfishmainly