DHM Blog - Life and work as an engineer with Multiple Sclerosis (MS) Creating an Accessible World

This blog introduces an interview that Eun Sun Godwin at the Business School conducted with Katy Deacon, the director of Towards Belonging Limited on her experiences and reflections of her life and work as an engineer with Multiple Sclerosis (MS). They met through the research project, “Manufacturing better world”, funded by InterAct, an ESRC and Made Smarter led hub (please learn more about the project here), where Eun Sun is a Co-Investigator.

Katy helped with the project team’s development of a scenario envisioning an inclusive future of disabled people working in manufacturing through inclusive digitalisation, as an advisory group member. They have also recorded a podcast on ‘Creating an accessible world’ (it is available to listen to on Apple, Amazon, Spotify and online) together with Julian Gwinnett, a co-chair of Disabled Staff Network. This interview was a follow-up on this podcast focusing on Katy’s own experiences and reflections on her ‘Disability, Livelihood and Employment’, the topic of this year’s Disability History Month. She talked about the significant changes in her livelihood and employment after disability. However, more importantly, the interview also highlights the journey of how Katy has been re-shaping her livelihood and work as well as how Katy’s passion in engineering and her ‘full-of-life’ characters continue. She also offers great insights on inclusive design engineering and technology development.

Eun Sun: Could you introduce yourself and share your story on how you started your engineering career?

Katy: How shall I start my story… I went to college at Greenhead College in Huddersfield and I had an opportunity to take part in the Engineering Education Scheme as my enrichment which gave me the opportunity to achieve my CREST Gold award. The scheme was great in teaching us skills and experiences working with engineers. It was a two-year after-college project. I worked really hard and ended up getting the Gold Award and the Engineering prize, which gave me confident that I can pursue my career in engineering. So, I did maths, physics, chemistry and computing for A level.

After A levels, I was naturally looking for universities and then, just after I finished my A levels, British Airways sent me a box of Concorde with an application form for their brand-new apprenticeship programme in the post! They mush have done UCAS search of who wants to do aeronautical engineering. I thought “British Airways wants me to apply for their apprenticeship!” and so I did, got the job and started my apprenticeship with British Airways, instead of going to the uni. It in fact offered a degree apprenticeship for those who want to do a degree by applying for it. So, I started HND in aeronautical engineering at Perth Airport and Perth College in Scotland learning the physical manual skills on how to fix an aircraft, and then after two years, I was accepted onto a degree course in City University in London and did the second and third year of the undergraduate degree in Air Transport Engineering and by the end of my apprenticeship, I had a first class honours degree! It was amazing that I had both academic knowledge from the degree and hand skills from the apprenticeship. Together, this knowledge and skills really helped me to understand fully subjects like thermodynamics.  Plus, I had an absolutely brilliant time!

However, I had to move out of the airline industry as when I and my cohort had just completed the course with all having got first, 911 happened. When the news of the attack at the Twin Towers happened, I was absailing down the side of cliff as British Airways had sent us all on an outbound course for a week. . We went inside and all of us were just in silence, watching the news. We knew what was coming was a massive change to our industry and the world

The repercussions of this meant that I needed to change my career focus  so I moved out of the airline industry and moved into building services. I became an electrical design engineer, designing fire alarms, electrical system, lighting systems etc. However, the theory was the same with just a different practice. I put myself through a night school to learn how to design using AutoCAD by doing Level 3 AutoCAD course. Later, my boss recommended me do a master’s degree, which was a requirement for a chartership as I wanted to have a chartership since my apprenticeship. So, I found Advanced Engineering at Loughborough University, focusing on designing energy efficient buildings, renewables, energy consumption and efficiency. My master’s project was developed with the Regional Development Agency in Yorkshire and I won the NICEIC Energy efficiency product of the year.  I became the chief engineer in the Energy Department and I managed the team. It was awesome.

Eun Sun: It sounds like you lived a very active life! Can I ask when did you have MS and could you share how your life and work were changed after it?

Katy: Yes, I was always active. I did my Queen Scout award and Gold Duke of Edinburgh award. I walked mountains. When I was living in Scotland during my apprenticeship, we were in the Highlands. After we finished work on a Friday, we just took the cars and went up the mountain doing wild camping. It was fantastic! I had no disability and never thought about it. I wasn’t bothered about accessibility.

When I was diagnosed with MS, it was just three months after I started a new job. I made the decision to change jobs following advice from my great mentor, an amazing lady, who advised me that I need to think about how to progress my career.  She advised me to think  whether  I wanted   to remain in the design department or toto learn more skills in governance and management to progress within local government, . At that time, I had a young baby, so at the end of 2011I decided to move a more office-based local job at the Huddersfield, as engineering work would require me to travel a lot to Leeds and London. I moved to work on cybersecurity and information governance and I also managed a team of staff andcarried out training in management and a Post Graduate Certificate in Information Governance and Assurance . It all worked really well.

This all happened whilst I was going through a period of change in my health. One day in August 2011when I was walking into work, I couldn’t control my bowel. It happened every morning so I started work early every day when the office was opening so I could clean up myself before my colleagues arrived. After that, in the first week of December, it was our wedding anniversary so we’d gone away to Kettlewell, which is an hour and a half up the road, but we had to stop 6 times on the way home because I couldn’t hold my bladder. In summer, my doctor said I must have irritable bowel syndrome and in December, my doctor said I must have a urine infection. Then over Christmas 2011 I stopped being able to walk. I had to have a stick and hold onto the walls. My husband came to the doctors with me this time asking that something is not right and something needs to be done. The doctor agreed and I was sent for diagnosis. In March, I was diagnosed with MS…

So, that’s my story and the rest is history. You know we’ve just got to make the best of life and it’s really important. You don’t know when your life’s going to change dramatically. Disability can come to anybody at any time. That’s why I am talking about disability and working on accessibility and inclusive engineering, because our world needs to become more accessible,to help everyone.

Eun Sun: What happened to your job after the diagnosis?

Katy: It was when I had just moved my job to the information governance job and my boss there was amazing. The company bought me a wheelchair and everything I needed. I did that job for 10 years because they made all these efforts. However, in 2022, my right hand stopped working, I have had an intention tremor in both hands for years and hadn’t had any practical use of my left hand for years but as I’m right handed it didn’t really matter. My condition progressed in 2021, and I lost the use of my left eye and my tremors increased meaning that I couldn’t use a mouse, type or see without a patch over my left eye.. By that time, I had a different boss. Neither she nor I knew how to support me as this progression with my disability just appeared. There was no manual for my boss or me to help me get through. All I could think was “I can’t even use a computer and so how on earth can I keep working?”. So, I had to accept an ‘ill-health retirement’ and I just thought that’s it. I didn’t know what I was going to do and had no purpose. I just felt like I was on the garbage pile…

Eun Sun: That’s such a dramatic change in your life and work… How could you get over those negative thoughts and resume your life and work?

Katy: After I retired, one day, my consultant at the hospital told me that “Katy, you need to stop thinking of yourself as having MS bur rather thinking of yourself as having a spinal injury.” So, I spoke to the people who have spinal injuries following the consultant’s advice, and I went on to a course called ‘What next’ run by a charity called ‘Back Up’. It was a one-week course. We started talking about all the things that are wrong with us and then after three days, they were saying “OK, now let’s stop talking about what’s wrong with you and start thinking about what’s right with you and what is still available to you”. At the last hour of this five-day course, they were again saying “Right, using the knowledge and the skills that you’ve learned over these last five days, what are you going to do in the next 12 months?”. I thought, “You know what? I’m going on holiday with my family!”.

I wanted to completely knock it out of the park. I thought “I am going to America. I am going on an aeroplane. Katy, you are going into a city. What do you think?”! It was just mind-blowing. For this, I needed to learn how to get onto an aeroplane and learn all basic things in life again. I put myself on to all different courses. I went to Edinburgh for four days to learn how to get over cobbles in a wheelchair and how to get up curbs. Suddenly, I had the skills, knowledge and confidence to go to Washington DC, New York, Boston and The Cape Cod, flying and then on a train!

Through this process, I also learned that the world is not helpful to wheelchair users and disabled people. I am an engineer. I have redesigned my own house to make sure that my house is accessible. I also spoke to other disabled people who are trapped in their houses, not being able to get out or use shops. I wanted to try and help fix this, and that’s why I decided to start my own company.

I can still work only 12 hours as I will just wipe myself out if I work longer than that. Nonetheless, in Towards Belonging, I can influence. I work on projects to help engineers understand how they can design with accessibility and inclusion in mind. I currently work with two universities through the Royal Academy of Engineering. I am also a vice president of the Institute of Engineering and Technology, so I've gone from feeling I had no purpose and nothing to do to actually doing all these things. I am now in the disability power 100. How amazing is that?

Eun Sun: I feel like your life has been changed dramatically from ‘there was no manual’ to ‘What next’, starting from re-learning some basic skills of livelihood, adopting your skills for work to helping others through your company!

Katy: Yes, you've got to retrain your brain and your skills because when you have a disability. For example, I cannot tie a shoelace anymore. My fingers, my dexterity, can't do it. So, I have to learn and find ways to do so. I am wearing shoes with laces, but they actually have a zip around the back that I can put on and off. Don't think about what you can't do. Think about what you can do and find a way to be able to do that. There are a lot of other ways available.

One of the most difficult challenges from MS is my inability to physically move and do something with my hands. I am a very practical and graphical person. I used to love drawing mind maps that goes to there and that will link to there and oh that'll come around and link to that. I can't do that anymore because my hands won't do it. So, I thought “I can talk forever. I can help other engineers learn how to design an accessible and inclusive world, and I've got the skills to be able to teach engineers!”. That's what I do now.

Eun Sun: It is an inspiring story! So, you teach engineering students in Aston and Huddersfield. Could you tell me more about your teaching please?

Katy: Actually, I was at Huddersfield University last Tuesday speaking to all the third year students coming from all different disciplines including manufacturing, electrical engineers, mechanical engineers etc. Unfortunately, technology didn’t work and so, I couldn’t use my presentation. I just told them, “You know what? We're going to talk. Let’s talk about how you can make your final year project inclusive”. I had a massive lecture theatre of students asking “I've got this project. What can I do to make it more inclusive?”. We just talked for an hour and only stopped because there was another class coming in. We had such a great time and I've got so many ‘thank you’ e-mails from those students. These students really want to make sure that they can make their engineering accessible and inclusive, but nobody's talked to them about it before. The more people talk about it, the more accessible we can make our world.

Eun Sun: Do you think your disability has reshaped or changed your engineering, either your perspective or actual engineering design?

Katy: I think it gave me confidence in inclusive design. When I first started in my electrical design work, because I came from the airline industry where safety was of absolutely paramount importance, I designed my first fire alarm with a red flashing light in every room for the deaf people. However, my chief engineer told me that I was wasting my clients’ money! I was 23, a young female engineer in a group of male engineers and didn’t have the confidence in the importance of the inclusion and disability like now, and so I took them out. My male colleagues told me I was wrong and I was not confident to say I was absolutely right! I sometimes regret thinking I should have pushed back 20 years ago so now I teach these things to the future engineers like the massive group of engineers on Tuesday, that It's an engineer's responsibility to ensure that they are advocating for the whole of the population, not just 76% of the population that isn't yet disabled. Disability comes to everyone at any time. Mine came when I was 32. If you look at the UN Convention for Rights of Persons with a Disability and as engineers, it's our responsibility  to ensure that ourdesign is accessible and inclusive for everyone.

Eun Sun: You have also recently launched your company ‘Towards Belonging Limited’. I really like the name of the company. Could you introduce your company a bit more please?

Katy: I really wanted a name that resonated with me. When there is a ramp as well as steps, I feel belonging as a wheelchair user. I feel like ‘you want me to come into that building’ because there's a ramp. If there is Braille on the door so that a blind person knows what's behind that door, they would feel belonging or if there are red flashing lights so that a deaf person knows that it's a fire alarm, they would feel belonging. This consideration in engineering design will make disabled people feel like that somebody has got the back and has understood them. My company aims to help the world move towards feeling of belonging because of inclusion.

For example, one of the things that I'm in the business at the moment is looking at accessibility in town centres. I went round my local town centre. There were over 80 shops, but I could only get into 35 of them with an accessible entrance. So, only 35 of them want me to spend my money. The town centre is absolutely dead in the daytime in a week because the majority of people who are available to come and spend their cash are older people with mobility issues. If they can only get into 35 shops, why would they bother going?

Eun Sun: That is an interesting point! Inclusive design is not just helping disabled people, but has a wider economic implications.

Katy: We need to think about these things as local authorities, as the combined authority, as shop keepers, as shop owners who are renting their shops to shopkeepers. We need to be aware of this because, sometimes people don’t or can’t spend money because they can’t access to the shops. The disabled community has available £274 billion a year. This is just basic.

It’s similar to work and employment. if you look at my situation, I became disabled at 32. I couldn’t work anymore because I became more disabled. So, my employer lost me. They invested me putting me through my Master’s degree and got me chartered. They developed all these skills in me and then they lost me because they didn’t know how to support me. What a loss…

Eun Sun: Indeed… You helped us with our project by providing insights both from a disabled person’s and an engineer’s perspective. What is your perspective on technology development for inclusive employment and work environment?

Katy: I think there is such a brilliant amount of technology available, but people don't know about it. I now use a computer thanks to assistive technology. I have a block of buttons that I've programmed to left click, right click, backspace and double left click. I then talk to the computer and it writes down what's coming out of my mouth. I don't have to type it. I didn’t know such technology exists but after I stopped working, the NHS got in touch with me because I said “We're in the 21st century and I can't use a computer”. My occupational therapist said “You just need to go to the assistive technology people”. So, they came to my house and we have now the equipment that we need.
To be able to make this kind of assistive technology to be known, accessible and used widely, we need to be thinking more about accessibility and inclusion as soon as you start framing. When you see technology development through the lens of accessibility and inclusion, suddenly assistive technology becomes part of the solution for many parts of our everyday life. For example, we use text messaging, but it was developed for deaf people to be able to talk. Now everybody uses it everywhere. I think if more people know about assisted technology, more people would use it because it helps anybody’s life and work.

You talked about Augmented and Alternative Communication (AAC) in your scenario. That's what Rob Burrow and Stephen Hawking used. It's what so many non-vocal people use to be able to communicate. Now, in terms of the technology I use, when I’m looking, I can dwell on different areas of the screen and I can be giving that computer messages whilst I'm doing other things with other bits of my body. When we've been talking, I am moving my mouse all over the screen so I can click on buttons without using my hands. This means I could do other things with my hands (if I could use them). Your computer isn't just waiting for you to move a mouse pointer around. It's actually doing so many more things. Isn't that amazing? Just wouldn't that be really cool if this technology can be widely used? If you see technology development from inclusive angle, you can bring both accessibility and innovation for everybody not just for disabled people.

Eun Sun: Thank you so much for sharing your experiences, reflections and insights. I think your last answer offers a great conclusion. As you elaborated, I think inclusive technology development such as inclusive digitalisation not only enables disabled people’s livelihood and employment but also enhances that of everybody. I think this is a very powerful message to policy makers and technology developers encouraging them to think about inclusivity as the core part of technology development!

If you have more questions on this blog or would like to know more about Towards Belonging Limited, please contact Dr Eun Sun Godwin at e.godwin@wlv.ac.uk

Please also have a look at the other part of the blog which provides some contextual information to supplement the podcast based on key findings from the research ‘Manufacturing better world’ on disabled people and employment: Read the blog: Creating an Accessible World Research on disabled people and employment.