World Inflammatory Bowel Disease (IBD) Day 2021
Sam Cleasby, Hallam student and prominent disability activist, has written a guest blog for us as part of IBD day 2021. She talks about her own experience and her hopes for the future. If you want to read more from Sam you can visit her blog – sobadass.
On World IBD Day this year, the charity Crohns and Colitis UK say, “let’s tell the world there’s no going back!” and as we are journeying along the road map back to normality, for many disabled people, there is a huge amount of fear about how that ‘normal’ effected our lives and how it will affect our futures.
I have had Inflammatory Bowel Disease since 2004, and I’ve had ten major surgeries since. Though I have a permanent ostomy bag, my disability is mainly invisible, and this makes it incredibly difficult for society to understand my needs. I have chronic pain, physical difficulties, chronic fatigue and I have to take a lot of medication every day. I have lost jobs before because of a lack of understanding around disability. This crushes your confidence and effects mental health when you feel that the world sees you as not enough.
But for both people with visible and invisible disabilities, the pandemic has brought some positive changes. Of course, it has brought many challenges and fears, but when the world suddenly got first-hand experience of the barriers faced by disabled people for years, it meant that home working, home study, and flexible working have become the norm.
When you have a fluctuating condition, you never know how you will feel one day to the next, this makes it tough to plan and sometimes difficult to leave the house. This doesn’t make for a bad employee, though I may not be able to work 9-5, Monday to Friday, I am still a talented and hard-working person who is a benefit to the business I work for.
Studies say that 52.3% of disabled people were in employment in 2020, whilst the employment rate for people who are not disabled was 81.1% Of course, some disabled people are unable to work at all, but most disabled people could be a valued part of the workforce if they were given the opportunity and support.
Disabled people who have fought for years for home and flexible working and were told it was impossible, were bemused to see the UK becoming a mainly home-based workforce and flexible working was suddenly acceptable when it suited the businesses.
During the pandemic when I lost most of my work, I decided to go to university at the age of 39. Being a Sheffield Hallam student, studying this year has been a shock to the system, but as lectures and workshops have taken place online, it made me realise just how much of a barrier had been removed from my life as a student. My chronic fatigue and pain have never stopped me from attending university this year, something that I would have had to deal with under normal circumstances.
Of course, there are huge positives to working or studying out of the home, the social aspect, the impact of face-to-face contact, the separation of home and work or study. But as we head back to normality, I hope we aren’t just going back to exactly how it was before. We need to use the learned information we have benefited from to create a future normal where home and flexible working makes for an accessible working experience for all.
Sources for IBD support and signposting: