It took me a while to know my needs – and my rights
Rhianna found out the hard way how inaccessible some workplaces can be. But since finding a disability friendly employer she advocates for herself and others.
I was diagnosed with MS during COVID. Before the pandemic, I had been working at live events as a merchandise manager at large concert venues. Then we weren't allowed to do that anymore, due to lockdown restrictions, so I lost my job.
During that time, I was falling over and I knew that something wasn't right. And then I had what I now know were some quite bad relapses.
Years before, I’d been fobbed off an awful amount by GPs. And when I'd been to A&E (Accident and Emergency) with full body numbness, I was told I was having a panic attack and to go home. In the end I stopped going back because it felt like no one was going to listen.
Now I’d changed GP, and because of my previous negative experiences, I pushed for a neurology referral, though that took a long time to happen. While I waited for a diagnosis, my symptoms began to get better. COVID restrictions had started opening up a bit and I took up a job in a bar. It was just to make some money. During the first few weeks of the job, I received my MS diagnosis from my neurologist.
My first experience of disclosing my MS
At that time I couldn't stand for long periods on my feet and because of COVID restrictions it was all table service at work. I told the owner of the bar about the diagnosis – including how upsetting I was finding it – and said I’d need to sit down more.
They quite quickly decided that because I was in a probationary period I wasn’t needed anymore. It was obviously tied to my MS. The manager said I had problems remembering things and that I was sitting down too often. I was really upset, as I was still trying to figure out the symptoms of my MS.
But this was hospitality, and a zero hours sort of thing. And by that point things started opening up again after lockdown and I knew I could go back to my old job at the live events.
The bar was only supposed to be a short-term thing anyway, so I just moved on. But that showed me how workplaces can be ableist and prejudiced against people with disabilities.
Discovering my limits at work
Back working in live events, I realised I couldn't hack doing what I had been doing – the late nights working at venues, coming back at one in the morning or later. It started playing havoc on my body again.
I could delegate work to other people if needed, which meant I could sit down, so there was some flexibility. People were quite good at recognising if someone had particular needs, but there was nothing formal in place. And as a long-term career, it wasn’t for me as someone with a long-term illness, with the hours and the running around.
Before COVID I was also training to work as a freelance makeup artist – that had been my goal. But by the time I qualified to work in special effects for film and TV, I started getting really bad relapses. Two weeks after a relapse, when I just started to walk solidly again, I ended up on Welsh mountain on a film shoot. I realised then that physically I couldn’t do that job either.
Some of the crew kind of got it and were like “ohh yeah, we'll give you a hand here and there”, and they were nice, but there was nothing on a legal level. Nothing formal. I didn't know any of my rights at this point.
Finding a job that suited my MS
I decided to take up an office job. It felt crap because being a make-up artist was something I’d aspired to do. That was my career, I’d always thought I would be going into doing that once COVID had cleared. But I had more relapses, and I just wasn’t sure I could have this career when my body was so unpredictable. And at the time, even though it wasn’t that long ago, the industry wasn't as disability aware as it is now. They had nothing in place for disabled crew. Maybe disabled cast, at a push.
With the office job, I disclosed my MS from the beginning – at the job interview. I hadn't been put on my disease modifying therapy (DMT) at that time, but I knew I would need to take time off work to go to hospital for the infusions. Their way to deal with this was to put me on a part-time contract. Eventually I went on to a full-time contract, but I had to take a sick day every time that I went for an infusion. I pulled HR up on it – I thought they should have disability leave or something, which would be more representative of for someone with a chronic illness. But they said that's the best we can do – we don't have a disability policy.
In the end, I decided that I really didn't like the workplace. I realised the job was making me really stressed for not enough money.
They weren’t great with access requirements either. They only had one disabled toilet and it was on the second floor. I was on the top floor and you'd have to get in the lift to go down multiple floors to get to that toilet. If you've got bladder urgency or anything like that, you need easy access to a toilet that’s reserved for disabled use.
Seeking a disability positive employer
In some of my roles I didn't want to say I had MS. I'd said that I had a trapped nerve or something because people could understand that.
People didn't know what MS was. Or if they had heard about MS, they didn’t understand why you weren’t in a wheelchair.
After those experiences I wanted to find an employer that was good for people with disabilities. Everything in my current workplace is accessible. They asked for my access requirements at the beginning. As soon as I disclosed everything, they said, “OK, we've got this, this and this.” In the first couple of weeks of the role, I went through Access to Work, I got an ergonomic chair, a new screen and software to help with working from home. It was brilliant.
I don't take my appointments as sick leave, people know that I'm out of office for the morning and that's it, as long as I can make-up the time. I have it written from HR that I have flexibility with attending the office. It’s as and when I can – once a week if I’m up to it. I don't go into the office at all around my infusion week.
Educating colleagues
The only thing that has been a bit difficult is when I've come in with a walking aid. People can seem a bit confused. Generally, when I do go to the office, it's on a good day. But sometimes I've ended up deteriorating during the day and I’ve had to get out my fold-away walking stick to go home with it. My close colleagues are absolutely great, but then you sort of spot the other colleagues questioning why I’ve got a walking stick.
Eventually I did a LinkedIn post because I was on the front of the MS Matters magazine. I was proud of that and I decided I wanted people to know. I wanted to be able fundraise, too. After that people started to come up to me to start a conversation about my MS, and they put towards my fundraiser.
That made me feel a lot better – it suddenly opened a door where people were just really curious to know about it. I was happy to explain how most days, ‘on the surface it may not look like I've got anything wrong with me, but actually this is what can happen and this is how bad it can get’.
Becoming an advocate for myself and others
It’s good to feel comfortable in a workplace, where I can be open about it and there's no issues. People know if I'm off work, I'm off work for a reason.
I would not like to go through what I went through with earlier employers again. I'm now quite proactive when people ask me about workplace rights. I try to advocate for others because I've dealt with crap and I don’t want to see people stand for it.
It ties in with the job that I'm doing, working with access coordinators on film sets. I support people who have access needs that want to get into the industry. I'm also in deaf and disabled film and TV groups on Facebook. It's been the best place for me because I wanted to be in the industry. And that I can advocate for disabled people has been really rewarding.
It’s only been in the last couple of years where things have started to change and people are beginning to ask “how can we make film sets accessible for everyone?” There's been some really great examples of that recently, which has been really nice to see.
Learning about my own requirements made me change my mind about the career I couldn’t have. Sometimes I can't use my hands very well and I've now got arthritis as well, so working as a make-up artist would be difficult.
I can’t be dwelling on the life I could have had though because I've managed to adapt and I'm OK with that. I feel a sense of purpose within my job now and that helps a lot.
They talked about reasonable adjustments at work, knowing your rights and disclosing your MS at work.
