Doing disability research as a disabled researcher!? Cliché or opportunity OR Why I’m starting this blog
I’ve started my PhD in 2008 but only began doing research on disability in 2017 and made it my core focus in late 2018. You might be wondering why it took me 10 years to make that transition. It’s not because I didn’t consider the topic of disability of interest to me or research in general. Rather, I was struggling with the decision if I – as a friend of mine calls it – want to become a “professional disabled person”. What he means by that is quite simply a disabled person who makes disability the main topic of their professional life.
So why did I not want to do that? It’s hard to put into words. Part of it was that it felt cliché: being disabled and doing research on disability. Another aspect was, to be honest, that I haven’t had great experiences in how people reacted to my disability and therefore didn’t want to make it more front and centre in my professional life. I’ve had many people doubting that I was actually able to do what I do and that I only got to where I am because others felt sorry for me.
So what changed? Many small things, too many to retell all of them. But in a nutshell, I joined academia to create change; to inspire the next generation of leaders to embrace sustainability to take care of our planet and to make the world inclusive. This is why I teach sustainability to management students. My research was always on change makers that start social enterprises and aim to solve a societal problem they are passionate about. So I started reflecting on what topic I was so passionate about that I wanted to devote a big part of my life to it and where I could make an impact. Then it just clicked: disability. In a strange way disability had become more of a key theme in my personal life anyway, it had just snuck in. Together with my parents, we ran a small NGO supporting families with children with sight loss in Germany. As part of our work, I would speak with teenagers and young adults with sight loss encouraging them to have dreams and follow them through. Trying to help them focus on their opportunities rather than their constraints. I volunteered with children with ASD (autism spectrum disorder) and Down’s syndrome. I had started volunteering as a speaker and fundraiser for Guide Dogs for the Blind Association and was elected into my university’s Equality, Diversity, and Inclusion Committee to speak on behalf of disabled staff. In other words, slowly without making a specific decision, I had become more and more outspoken on disability not just for myself but for the community. So a natural next step seemed to be to support that work through my research.
Within research we often talk about balancing objectivity with subjectivity and trying to avoid bias (that we say the data says one thing based on what we want it to say). However, we also talk about how perceptions and viewpoints are unique to people’s experience in life. Therefore, how can someone who has never been disabled or experience disability-related abuse and discrimination fully grasp the disability experience and write about it? One key aspect of the disability rights movement is that we don’t want others to speak on our behalf. I strongly believe that any research that tries to understand what challenge people with disability face and how to overcome them should include our voices. So, I can use the privileged position I am in to be that voice, ask those questions, and try to represent people with disability within the research discussion.
So what is this blog about?
To make a long story short: as the name suggests, this blog is about disability research. I will blog on my own research around disability and entrepreneurship (starting businesses), disability and inclusive education, and disability and cultural inclusion. I will talk about the things I learned and found out while doing research on these topics in many different countries with many different people.
I will also showcase the work of others. All the work I feature will always make sure that this is research that fully included the voice of people with disabilities; where the research is not done on people with disabilities but with them.
But wait that’s not all: I will also blog about my experiences of doing research as a disabled academic. I will write about some of challenges, the funny moments as well as those things that frustrate me about how others react to me. This part is personal. I have no intention of saying that this is what all disabled researchers or all registered blind researchers think and experience. Those posts reflect what I think and feel. I will share these experiences with you to encourage other people with disabilities to join academia but also to hopefully change some of the attitudes and behaviours of my non-disabled fellow academics.
I hope you will enjoy this blog. If you do, spread the word and follow me If not , get in touch and let me know what you think I could change. Thank you!
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