By Beds SU
Monday, 29 November 2021
Like many with hidden disabilities. I have been asked, “do you know this is a disabled toilet?” Or “do you know this lift is only for disabled people? Here she is, late again to the meeting. Don’t worry about her she can’t hear you anyways!”
I’ve become accustomed to ‘shrugging off’ these comments, but here is my reality.
I have a number of auto immune diseases, which I have had since birth, although I was 10 years old when I was diagnosed with my first lifelong chronic health condition.
In some respect I was relived as I had always felt different to my peers but couldn’t communicate why. My family simply thought I was a lazy child with little motivation or interest in the things most children love.
From that moment on I have developed further health issues and hidden disabilities every 8-10 years, that have resulted in needing time out for medical appointments that require more medication and evasive treatment. The treatment can be just as unpleasant and carry more side effects than the illness itself.
During my formative years I experienced huge isolation from my peers and tried to develop a good sense of humour to hide the pain and discomfort I often felt.
I’d often push myself to do things my friends were doing so not to seen as different, usually ending up in great pain and suffering as a result, yet I continued to smile through it only to return home exhausted bereft and not showing the outside world how ‘that little trip out’ ‘that extra meeting’ ‘a night out with girls’ has literally taken the very last ounce of energy I had left. Weekends become one day a week instead of two and with no day off on a ‘Birthday’ ‘Celebratory events’ or even a holiday.
Auto immune diseases continue to develop as you get older, and so you are constantly learning how to manage and live with the new challenges they bring. For example, considerable hearing loss and chronic fatigue ‘brain fog’ (the latter of which is more prominent in women).
Despite these ongoing developments I’ve always been very conscious about not becoming my disability and letting it define me preferring I am me with a disability. It’s a good attitude to have, but it can also mean on the outside you may look like you are coping well when really, you’re not.
Why talking about your disability can both support you and others understanding
Fast forward a few years, and with a bit more awareness of my health issues I started to explore what support was available to me.
I cannot express enough how important it is to talk openly about your health and barriers you face due to your disability, as people won’t know how to support you if you don’t tell them. Now, as with any new job I don’t hide my disability from my employers and speak openly with the HR department.
It was only then I found out about ‘reasonable adjustments’ to help me manage my health whilst remaining in full time employment. I don’t do any less than my colleagues, I just do it differently. Being more open also means my colleagues have also been mindful about quietly taken some of these factors into consideration.
What is a reasonable adjustment within education institutions?
The duty to make reasonable adjustments requires an education provider to take positive steps to ensure disables students can fully participate in the study provided by the institution and that regardless of your disability you also can enjoy the benefits facilities and services the university provides to all its students.
I would also point out here; it’s not about having a one-off meeting and then no more as these issues can be ever evolving, having good days and bad days. so, it important you raise the issues at the time with someone who can support you to make the most of your studies. I have recently identified further reasonable adjustments after a period of reflection since working from home over the last year or so.
Where to go for support at University
If you are in contact with UoB disability and dyslexia team you should be having your learning agreement reviewed at the very least once every academic year or when there is a change to your health and wellbeing, as each year will bring new challenges. Challenges that can be overcome when you ask for support and advice. You may not get a reminder so it’s important you engage with the support this team offers and ask for a review of your reasonable adjustments at least every new academic year.
If you require any further information about how Beds SU can support, you. Drop us an email to help@bedssu.co.uk
Want to know more about your rights as a student with a disability?
Further information can be found by visiting these recommended websites.
UCAS - Guidance for disable students applying for university
Office for students - Coronavirus briefing for disabled students