Whose story is it to tell?

Conducting a research project about users with additional support needs without having one.

I guess if someone were to describe me, I would be an average adult. I might be a little short for the UK’s context, but other than that, I would be, to use a common phrase that I really don’t like, an abled-body adult woman. By that description, I should be part of the group of the infamous “normal or average user”, which sometimes designers use to hide behind when procuring a design for an object of any kind (products, environments, services…).

The so-called “normal or average user” is a non-existent, fictional person, as there are not two individuals that are the same, with the exact same set of abilities developed to an equal level. I am certainly not that person, I do struggle to reach high shelves; I sometimes pull doors that should be pushed and push doors that are meant to be pulled; more often than not, I have to look up to be able to breathe properly in a crowded place; and I get back pain because chairs are too tall and my legs can’t reach the ground. I, too, am disabled by the environment and I, too, make excuses for designed objects, because “It’s just that I’m shorter than most”, because “I am a bit short-sighted” or because “I just go around not paying as much attention to the things I am doing, as I should”.

I do not pretend, however, to be one of the users that struggles the most or are more vulnerable to the effects of poor design. There are users with a unique set of skills and abilities that face much more challenges in the built and social environment than most, and certainly much more than me. But that both I and one of these other users can belong in the same group, is for me, the beauty of Inclusive Design. We are not all the same, but we are all equal and we should be treated as such by our built and social environment.

Since I started my PhD on the subject of Inclusive Design last year, I have felt a great responsibility to do this in the right way and more than once I have wondered “whose story is it to tell?” I have come to the conclusion that a story can be told by many, from multiple points of view, and that all the versions on one story, united, will get us closer to a real understanding of that particular reality.

When talking about additional support needs, the contributions made by design professionals such as Selwyn Goldsmith and Ronald Mace, having both additional support needs, had a great impact on inclusion and accessibility in the built environment. Their work and that of others like them, in the design disciplines and other disciplines, opened important conceptual conversations that are currently still going. Their first-hand knowledge about the challenges presented by the built environment, and of architectural design as a discipline, allowed them to put together tools and guidance, and foster ideas that would help others put in place provisions to make spaces more inclusive and accessible.

However, many others who were willing to listen and to see the world through the eyes of others, while understanding the importance of equality, have continued working in these subjects, making great contributions to those conversations. I hope to be one of these. I cannot pretend that the way I see the world as a person, and specifically as the person that I am, will not influence my process of research and understanding of any phenomenon, but I am willing to listen and I am willing to see through the eyes of others and let those circumstances change the person and the researcher that I am.

I come from a country in a post-conflict situation, still struggling with the aftermath of a 50-year conflict, trying to find a way to heal itself and move forward. When I moved to the UK, I was surprised to find out how much interest and attention that the situation got from the academic community, in such a faraway place. Oddly enough the interest to study and understand a subject that is close to us, more often than not, comes initially from outside. As it happens, sometimes we are so close, we fail to see its importance, but once the conversation on that subject is open, and we are able to see it as something that is worthwhile understanding and learning from, we can all contribute to it.

I feel the same way about Inclusive Design and additional support needs. I have already read and studied great stories about these subjects, told by their main characters and/or observers. I look forward to hearing the story I am telling, and other stories, be told by others, especially by those who have first-hand experience. I know that many of them are out there already working in doing so. In the meantime, I am very happy to contribute to this conversation and to do my bit to keep it open for others to join in, hoping to do this in the most responsible, respectful, honest and truthful way while doing justice to the voice of those who decided to share their experiences with me.