Our World of Work column aims to inspire others to find the confidence in finding their dream career by knowing what is out there, what is possible and how to get there themselves.
We would love to hear from you about how you got into the world of work! We hope this column will inspire others to find the confidence in finding their dream career by knowing what is out there, what is possible and how to get there themselves.
We would love for you to write a short blog about your career journey! If you want to get involved in this column, contact us at hello@rareyouthrevolution.com
What do you do, what is your role and what does it involve?
I am a Cell Line Engineer! I am part of a team that genetically edits cells, grows them up big and strong, and sends them off to aid in research about diseases and drug targets. My role involves a lot of growing cells in plates and flasks, problem-solving, and using lab automation to help me do it. I am also a co-lead of our global disability employee resource group.
How did you come to do your current job and knowing what you wanted, and how to get there?
You know that song by The Beatles, I Get By With A Little Help From My Friends? Well, I wouldn't be here without the help of my friends. I struggled with unemployment for 3 and a half years after I graduated with my masters degree in Pharmacology. I faced barriers based on my disabilities. Often the application process would go well until I started talking about the
leadership skills I gained from wheelchair basketball. A lot of the time, I wouldn't get that far. I actually applied for one job with two CVs—the most basic CV I've ever written that didn't mention wheelchair basketball got a call back, and the CV with relevant experience and wheelchair basketball did not. There is a LOT of stigma about disabled people in Science, Technology, Engineering and Maths (STEM). I'm confident that my current employer would have seen me for the terrific scientist I am. But my friends really helped them see that, and helped them see that yes, I'm DeafBlind, yes I'm Disabled, but I am also a scientist and can do anything the rest of my team can.
I always knew I wanted to be a part of research, but I didn't know exactly how. In my current role, I get to be a part of research by providing the tools that are needed to get the job done, saving the world one cell line at a time. Before I came here, I had never thought about where the cells we use for research come from. I used edited cells in my MRes, but at the time, I didn't pay enough attention to how I got them, and how helpful they would be to my thesis. When I heard about cell line engineering, it just clicked in my head that yes, this is something I want to be a part of.
When I started my role, I knew that I wanted to be more than a scientist who happened to be disabled. In my first month, I put together a Deaf Awareness Week email to send to all my on-site colleagues about what deafness is, and how best to communicate with me and other deaf people. I then also took the reins for Pride Month, and from there I became a member of our internal events group. I worked really hard on outreach and awareness by making disability awareness posts on Linked In, and then I put together a team to take my company to RAREFest 2022. Seeing the two major parts of my identity come together in celebration felt incredible. I was then invited to lead our new disability employee research group, which I gladly accepted.
I knew that the key to getting where I wanted to be, both as a scientist and a disability advocate, was to always be who I am, and to aspire to being the person I needed to see when I was first diagnosed.
Did you face any challenges and how did you adapt to them?
After being out of the lab for so many years, I had a really steep learning curve when I finally got back in. One of my symptoms is brain fog, so taking on huge amounts of information in a short space of time was really difficult. I took notes, and pep-talked myself to remind myself that it's OK to go back over stuff if I need to. My biggest challenge during training was that none of the training videos had captions, which are vital for deaf people. It is really hard to just "adapt" to this, but I worked with my colleagues who went over some of the material in person with me, and I was allowed to purchase some T-Loop compatible headphones to work with my hearing aids through the company.
In the time since I graduated and before I started my job, my disabilities changed dramatically. My visual impairment is called Visual Snow Syndrome (VSS), which means that everything I look at is covered with TV static, and I experience light sensitivity and a phenomenon called "after images". I was born with this, but it got significantly worse after a change in medication while I was unemployed. Before this, I did not know that I was already living with a visual impairment, I thought everyone saw the world like I did. I had never been in the lab with my VSS this severe. I had never looked down a microscope at cells when everything looks the way it does for me. So I was worried that I wouldn't be able to do it, but I dove right in. I learned how to make each microscope in the lab for me: the light levels are adjustable, the focus is adjustable, and the phases and filters are adjustable.
What kind of employer were you looking for?
I was looking for an employer that would see me for me, and value me for me. I was looking for a team who would embrace me and my quirks, and not just accept who I am, but celebrate it too. I found them.
Have you/your employer had to make adaptations/reasonable adjustments to your role?
One of the many beautiful things about science is that almost everything is already adaptable. As I talked about above, microscopes are already adaptable. We had to purchase a suitable headset, but that was nice and easy. I had discussions with HR and Health and Safety about my ability to work alone and work out of hours, as well as how my disability affects me, but it was a conversation requested by them, but led by me. I was in the driver's seat about how we handled the various aspects of my disabilities. When I use a walking stick at work, we have plans in place for where I can put it and how I can safely use it. I haven't yet had to use my wheelchair at work, but 95% of our kit is accessible for that, and the other 5% I have no problems asking for help with.
What difference does it make being supported by your employer?
Without having their support, I wouldn't be able to be both a scientist and a disability advocate within the field. Having a supportive employer means that the conversation is always ongoing. I am free to speak my mind and highlight accessibility concerns no matter how big or small, and I know that my concerns will be listened to. I can tell them about disability struggles and know that they will listen, and support when needed. It's the difference between having a job and having a career. They are supporting me to be a better scientist, and in my role as a global co-lead in our Disability Employee Resource Group, I am supporting them to be a better employer.
What do you wish people knew about going into employment as someone living with a rare disease?
That it can be done! The right employer will make you feel comfortable and supported, and will have your back. It's by no means easy—you are still living in your body, and a supportive workplace doesn't make your rare disease go away, but it will be less of an obstacle. You can absolutely be a disability advocate and be in employment if that is what you want to do. You can also be someone who has a career and happens to have a rare disease.
What advice would you give to others entering the world of work?
You've got this! You come first, always. No job is worth risking your health for. A good employer will work with you and support you. Be open and honest with your employers so that they know how they can help you. YOU are always the one in the driver's seat. Your rare disease is yours, to show off as much or as little as you want to. And employers who celebrate that are out there, I promise.
Socials
LinkedIn: Max Fisher
Alumni Fellow Profile: Max Fisher
DeafBlind Awareness Week With Sense: Sense Charity YouTube video
Instagram: ouch_mouse
YouTube: Ouch Mouse
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