My grandad was deaf and wore hearing aids. Two of my aunties have depression and another has schizophrenia. Growing up, I also saw many people using walking aids or wheelchairs. Despite all my childhood exposure to disability, I didn’t hear the term ‘disability’ until I was a teenager. By chance, I heard a student at my high school talking to his friend about helping out at Disability Awareness Day in Warrington. This is my first memory of ever hearing the word: disability.
Even when my first rheumatologist diagnosed me with seronegative rheumatoid arthritis, he never said disability. He simply told me that I have this condition and this is the medication he would like me to try. That was it. There was never a clear explanation of what my condition actually is, how it would affect me, support available, or the fact that it is a disability and my rights under the terms of the Equality Act 2010.
When I first started working, I experienced discrimination in a few different companies. One manager asked me if it affected my ‘mental faculties’ despite having successfully completed translation tasks at interview when I became a translator. I just remember bluntly saying ‘no’ and feeling baffled. Another told me, ‘You’re a recruitment problem’ when I explained that I could not lift boxes due to my health condition. This was also not part of my job remit. I had been employed to carry out a desk job using my language and writing skills. A member of my team once said, ‘Maybe you didn’t hear me’ when she had forgotten to ask me to do an important part of a copywriting task and I knew in my heart that she had just forgotten to tell me. If she had apologised and asked me to complete this part of the task, I would have completed it straightaway. Instead, my confidence was shattered over time. I felt that despite my skills, I just didn’t belong there. I even questioned whether I belonged in the working world. Consequently, I left these companies and didn’t return to my love for writing until years later because of this trauma.
It also made me anxious about having a health condition and disabilities, which I had never viewed negatively until this point. It made me want to learn more about my condition, disabilities, and employment rights. Reading into my condition and disability in a wider context not only helped to deepen my own knowledge, but also helped to raise awareness among my future line managers, in a positive way. One previous manager appreciated me explaining my condition and aspects of the Equality Act 2010. We had a kind and constructive conversation, which led to her wanting to learn more about disability and employment rights for employees with disabilities. So, she went away and read more about the Equality Act. Years later, we are still in touch.
Fast forward more than ten years and with the development of social media, there is so much more awareness although I still consider myself to be on a life-long learning journey because I firmly believe you never stop learning. Having two young daughters and realising the importance of knowing about disability, I have talked to them about disability from an early age. My eldest even asked for ‘hearing aid Barbie’ one Christmas and her own ‘Frozen hearing aids’ to be like mummy. While Father Christmas did, indeed, bring her ‘hearing aid Barbie’ down our chimney, we explained that the ‘Frozen hearing aids’ can only come should she need them to hear.
My own experience has taught me that when people respond negatively to disability, it is often rooted in their own lack of knowledge and awareness. People who are well versed in disability recognise that this is only a barrier if you choose to put one up.
Having disabilities has also taught me so many important skills. I have learnt to prioritise what is important and to balance this with rest. I have learnt to be organised: organising my health appointments, ordering and collecting my prescriptions, and planning in time to exercise and rest. Having a physical disability that affects my mobility has taught me to open more shop doors for people and offer help to those who may be struggling with their shopping. Being deaf has taught me the importance of listening, speaking clearly, and looking at people when you’re talking to them.
Most importantly and above everything, having disabilities has taught me empathy, kindness, patience, and the power of helping other people. It’s recognising that behind the door to every person’s home lives a person with a story to tell and that we aren’t actually all that different. We all have our likes and dislikes, life challenges and achievements to celebrate. Above all, we are all human and there will be a point in our lives, whether that is at the beginning, middle or end, where we will all have a disability at some point and that is why we should always keep talking about disability and caring for one another.
Nadia Bousseau