I was having a conversation today that illustrated how hurtful it can be to feel silenced or not valued. This is something I go on about a lot when I work with teachers or people training to be teachers but in this instance it was the people training the teachers who were doing the silencing. It reminded me of when I was doing my Montessori teacher training. I already had a BEd hons and was part way through my Masters degree. In those days I was much quieter and spoke up less in class discussions. I was struck by the incongruity between what the lecturers were saying and doing. They were telling us how to be as Montessori teachers; how to speak, carry ourselves, interact with students. All of these were calm, respectful, emotive neutral and yet this was not how they treated the students in their classes.
The reason I was reminded of this was that these educators work in the academic and research fields of inclusive education and/or disability studies and yet they were not acting in inclusive ways. Valuing voice is an important aspect of research involving human participants and yet some (by no means all) of these educator/researchers expressed the view that non-academics should not have been allowed to present. They were prioritising and valuing the voices of the researchers over the researched. If this had been an economics conference I could understand why they might feel this, but a conference around disability, education, inclusion!?
One of the participants talked about how we need to remember how privileged we are to be attending and to be able to be heard. I thought about that in the context of society and then in context of this conference and I realised that when voices are silenced or excluded on dismissed that the reason is not always or only about power, sometimes it is about insecurity. If the voice of a ‘mere’ research subject takes precedence or is equal to the interpretation and voice of the researcher how does that impact on jobs, grants, promotions, status?
In response to these thoughts I decided that I would give away more of my research findings so that they are in the public domain and able to be of use. My research prioritised the voices of the researched and was checked repeatedly (iteratively member checked) to ensure I represented their thoughts and actions accurately, but ethics constraints prevented me from naming them and crediting them. However, I can make sure I conduct myself with integrity and do not silence or dismiss the voices of the researched in any/all research. I can decide not to and to do things because of the valuing of diverse voices rather than the privileging of voices that have already obtained a hearing and a status over and above that of others.
Adults on the autism spectrum and indeed children on the autism spectrum rarely have their voices privileged, instead the interpretations of researchers of the spectrum behaviours and ways of being/interacting are valued and held as expert. In this way, I find myself listening to research that suggests I have x, y or z deficits that are in juxtaposition (not the same as) with ways that we view ourselves. Sometimes I try to tell the researchers and sometimes I don’t as I know that often the research ‘has’ to stand as is, because the interpretations have been done, are finished.
Ethnography seeks to use member checking now (people from the culture being researched are able to give input to ensure researcher interpretations are correct). I think that disability research of any kind should utilise this collaborative form of interpretation to prevent voices of the researched being misrepresented by inaccurate data interpretation. It seems pointless to me to spend time researching something, anything, if it does not give an accurate voice to the researched. To me that would be a bit like researching the link between food choices and health in the elderly without talking to any elderly people and gaining an understanding of their individual perspectives of health. What health means for a terminally ill 87 year old may be very different to what it means for a 70 year old with a 40 year old partner.
So, if you choose to be a research participant in any autism focused research perhaps you can ask the researchers who checks their interpretation of the data? Do you have any say in how you/your child is represented in their research at publication/entry to the public realm? Push for the involvement of those on the spectrum in research design and ethics committees and also funding panels. Is it really more important to look at gut motility in ‘autistic mice’ than to find out why/how some adults on the spectrum are able to find and stay in the workplace or in relationships whilst others struggle to do so, or never do, even though they want to?
If you are a researcher, or know a researcher, in any field, please reflect on how your research participants voices are presented. are they truly valued and privileged? If not, how could you change this?