#WithNotFor: The Importance of Inclusivity in Research

Olivia Najdovski is a 2020 Social Connectedness Fellow working with Special Olympics International to better understand the sibling experience of athletes with intellectual disabilities. Olivia is passionate about research and its applications to develop solutions for complex, real-world issues. Ben Haack is a Special Olympics Athlete Leader from Australia. He is an inspirational athlete, an accomplished football and cricket player, and a mentor and ambassador for Special Olympics.

What do seatbelts and soap dispensers have in common? 

Of course, they both protect people, whether it be from injury or illness, but they have another similarity – they may not protect everyone equally. 

Seatbelts were originally tested using a crash test dummy that was designed to represent only the average male. In recent years, female crash test dummies have been used to test seatbelts but these are simply smaller versions of the male crash test dummies. They do not even remotely represent the average female’s proportions. As such, it may not come as a surprise that a study conducted in 2019 revealed that women are at a disproportionately higher risk for serious injury in car crashes compared to men.

The automatic soap dispenser has been accused of a similar problem. A viral video shared in 2017 reveals an automatic soap dispenser that only responds to lighter skin tones. The infrared sensor was likely never tested on darker skin tones. The caption reads: ‘If you have ever had a problem grasping the importance of diversity in tech and its impact on society, watch this video.’ This oversight in research has the potential to lead to the spread of disease, particularly within marginalized communities. Amid the COVID-19 pandemic, the harmful effects of oversights like this are readily apparent.

These examples provide insight into the serious consequences that can result from research that lacks diversity and inclusivity. 

So, how do we address this problem?

Diversity is a necessary first step. In this context, diversity refers to conducting research on populations that have previously been ignored, but diversity is not enough. Inclusivity in research is also a necessity. Often, research is conducted for marginalized communities, rather than with them. This propagates the assumption that these communities do not have valuable insights to offer. This assumption is completely false.

Ben Haack understands this problem all too well. Ben is an accomplished Special Olympics athlete and the Athlete Representative on the Special Olympics International Board of Directors. Despite his outstanding achievements, Ben’s story has not always been one of triumph. As a person with an intellectual and developmental disability (IDD), Ben faced relentless bullying and harassment throughout his school years. He recognizes that people with IDD are “fundamentally undervalued by society.” Today, Ben is outspoken on the lack of inclusive research on IDD. He emphasizes that one of the biggest challenges for Special Olympics in developing effective support programs for individuals with IDD and their families is that there is “extraordinarily little inclusive research on individuals with IDD.” He highlights that the little research that is conducted on IDD typically only includes the perspectives of people without IDD, like parents, teachers, or medical experts. Although these perspectives do have value, the perspectives of the population being studied are notably missing. In addition, individuals with IDD are often not included in the development of this research. This field of research significantly undervalues the wealth of insight that people with IDD have to offer. 

Special Olympics is attempting to fill this glaring gap in research pertaining to IDD. Its research on IDD and sibling relationships provides an excellent example of inclusive research in action and reveals its many benefits. This research is part of Special Olympics’ Sibling Engagement Initiative, in partnership with the Samuel Centre for Social Connectedness, which aims to recognize and provide support to the siblings of people with IDD and empower them to use their unique experiences to become leading advocates for inclusion. In line with these goals, this research is developed and conducted with a team that includes both individuals with IDD, like Ben and siblings of people with IDD. By adopting this with not for approach to its research, Special Olympics is able to learn from the knowledge and insights of people with IDD and their siblings to produce research that is accurate and relevant to the population it pertains to.

An inclusive approach helps marginalized communities feel as though they belong and that their perspectives and insights are valued. Research conducted for a community may portray an inaccurate or incomplete picture compared to research conducted with that community. As exemplified in the testing of seatbelts and soap dispensers, research lacking diversity and inclusivity can provide an incomplete picture and have dangerous outcomes. Researchers should #ChooseToInclude whenever possible, by adopting a #WithNotFor approach, particularly when conducting research with marginalized populations.