Jaana’s story: Open talk about disabilities and diseases opens up the working life to diversity and adjustments

Career story

My greatest achievement is a long career working for the City of Kotka with a congenital and progressive rare disease. There has been a positive change in the working life regarding the attitudes towards disabilities, but work is still needed to achieve equality. My working days are now behind me, and I have more time for my passion for disability sports.

I attended comprehensive school and upper secondary school in Kotka. After that, I studied at the Kasvattajaopisto Educational College in Pieksämäki and completed my degree in social education. I graduated in 1993 and was immediately employed as a substitute kindergarten teacher in Kotka. My position was made permanent after a few years. Over time, I worked in both small and large day-care centres. I had a front-row seat observing the change that took place in the daily life of families and in the early childhood education sector from the beginning of the 1990s to the 2020s.

When my functional capacity began to deteriorate, I became aware that I would have to change jobs at some point. I felt that my outdated qualifications were no longer competitive enough in the modern-day labour market. In 2010, I decided to upgrade my degree to a bachelor’s degree in social services. I wanted to start on a master’s degree right away, but as a result of the educational reform, my secondary-level degree meant I was not eligible to attend further studies.

It was strange to retake a basic degree in a field in which I had worked for more than a decade. I completed the education alongside my work in just over a year, after which I continued to complete my master's degree. However, I was unable to advance the theoretical part of my thesis because my functional capacity was deteriorating rapidly at the time. My numerous symptoms made it difficult to read physical books and use source literature. Unfortunately, the educational institution did not offer sufficient means of adapting the thesis work, which meant that I was forced to give up on my dream of obtaining a master’s degree just before the finish line. As I had no diagnosis at the time, I was unable to draw on the benefits and support made available by the disability services.

My deteriorating condition ultimately prevented me from working as a kindergarten teacher altogether. It took years to recover from the prolonged overload caused by working in day-care centres. I was eager to try new jobs, but unfortunately none of them was suitable for me. Luckily in 2017, I was offered the position of a customer service coordinator. The work was interesting, challenging and, above all, suitable for me.

The new position stirred my interest in service design, and I started studying at Business College Helsinki toward a specialist qualification in product development. The studies progressed well, and I was offered the necessary adjustments and accommodations. I completed my degree, and the spark for studying was ignited anew. I wanted to learn more about service design, so I casually applied for a master's degree in design. To my surprise, I was admitted to the programme with almost full points. I felt like I had arrived home, as the programme seemed like the perfect study module for me.

However, I was once again faced with the institution’s inability to make the adequate adjustments. Accessibility was addressed in plans and festive speeches, but the institution's most important resource – the teachers – were not yet up to speed. Studying became unreasonably burdensome, and I was forced to interrupt my studies. It was a mentally strenuous decision and a sad moment in my life, as I also said my goodbyes to goal-oriented studies for good.

I have always longed for a community, challenges and learning something new

My symptoms had progressed since upper secondary school, but I did not receive an official diagnosis until 2019. It finally allowed me to seek help for my everyday life. Getting diagnosed was also a decisive moment in my career. I have always been work-oriented. However, as I learned there was no cure or medical treatment for my condition, it was time to stop and think about my own values and functional capacity in the light of this new knowledge. Back then, I could already have retired from the working life. However, I have always longed for a community, challenges and learning something new. I wanted to continue working part-time, so I opted for partial disability pension.

Thanks to the flexibility of my employer and supervisor, I once again found a new career: I started in the brand new position of a service planner. The job was independent, meaningful and challenging. In my last years of work, I was able to utilise my creativity and learn something new every day. The employer and my wonderful supervisor offered me the adjustments I needed. Thanks to them, I was able to work for much longer than I ever anticipated. I feel that all the possible adjustments were made, my superiors had faith in me, and I was able to use all my skills and expertise for the benefit of the organisation. I am proud and grateful for my last working years. I want to extend an especially heartfelt thank you to the City of Kotka and to my supervisor Eija Grönholm.

My illness continued to progress, and I finally took a long sick leave in January 2024. My goal is to retire on disability pension. There is no going back to work for me, as there are no adjustment options left and my condition is getting worse. I have accepted the reality, and I understand that I was working on overtime for the last few years of my career.

I have challenged the working life through my own actions

My greatest achievement is my extensive career. It took a lot of gumption and resilience. I have had symptoms throughout my adult life, and it is hard to live with a progressive disease without a diagnosis. However, I have always trusted in myself, in my competence, and in the fact that I have something to contribute to the labour market. Fortunately, I was finally diagnosed, as the diagnosis enabled me to get the adjustments I needed and allowed my career to continue.

I have faced many kinds of challenges in the working life. For example, back in the early 1990s, there was little support or training available for supervisors in the field of early childhood education and care. Unfortunately, this shortcoming did not go unnoticed. Luckily, things have since changed for the better! At present, competence development and the well-being of managers are prioritised, which is reflected in the improved management of people and operations. Employees are every employer’s key resource, and a committed and motivated employee is a true treasure. Having a disability does not automatically mean that an employee is less motivated or willing to commit to the working life. Because of my needs and limitations, I have sometimes felt like a burden. However, this has only reinforced my determination to show my worth as an employee with a disability.

At times of change, employers should encounter their employees in a comprehensive and interested manner, without prior expectations, and with a keen ear for listening. We have a lot of expertise and skills that may not be reflected in the current position. Employers should be ready to act flexibly and make the necessary adjustments. It is a matter of will. If there is no willingness to cooperate, it is difficult to sit at a common table looking for solutions. I have challenged the working life through my own actions by openly telling others about my disability and functional capacity. I believe that open talk about disabilities and diseases opens up the working life to diversity and adjustments. The law sets out obligations, but attitudes live within us all.

Life is like a leaf in the wind

I want to encourage everyone in the working life to focus on continuous growth and development. Be curious, get excited, and dig deeper in the things that interest you. Life is like a leaf in the wind, and there is no knowing where the winds may take you. Sometimes the first job you get after graduation is not the right fit for you. Dream job or not, it is still rewarding to do your job well and to give it your best shot. You can either succeed or fail at any job, but by doing your best you can demonstrate your worth and competence as an employee. This, in turn, can open up new opportunities later on.

As a child, I dreamed about working as an air hostess. I used to watch the beautiful flight attendants at their work when we would go on family holidays to Tenerife. Little later, my dream was to work as a riding instructor or a police officer. I even applied to a class teacher’s study programme a couple of times. Although I never dreamed of graduating as a social educator, it proved to be a versatile degree. There has been no shortage of interesting work!

Working in different positions has taught me a lot and changed me as a person. It is difficult to distinguish between what I have learned in the working life and what stems from somewhere else. If nothing else, my work has taught me a great deal about myself and other people.

At present, I enjoy taking part in the world of disability sports. During a rehabilitation course organised by Kela, I experimented with different sports and found air rifle shooting. I fell immediately in love! It is a calming, straightforward sport that suits my analytical nature. Although it may seem like an unsuitable sport for persons with disabilities, there are plenty of possibilities for adjustments. Fortunately, I immediately found a personal coach with whom I can train in a goal-oriented manner. I also have skilled personal assistants who take care of my equipment and load the gun when I compete. In early 2024, I achieved silver and gold medals in the Finnish Championships R5 series and made the new Finnish record.

At present, my daily life includes a lot of sleeping, slow mornings, training, competitions, social media and sponsorships, as well as background work for cooperation agreements. Disability sports provide me with an encouraging community, new challenges, and an opportunity to dream. These days, I listen to my body and do things at my own pace. I enjoy the moment, and I cannot wait to see where my future with disability sports will take me.

Jaana Feldt