Changing Perspectives and Meaningful Problems.
Let people with IDD pick the research questions and your science gets both kinder and stronger.
01Research in Context
What this study did
Symons (2023) wrote an editorial. It tells researchers to pick questions that matter to people with intellectual disabilities.
The piece asks teams to drop ableist assumptions and work with self-advocates when they plan studies.
What they found
The paper finds that many studies still treat disability as a problem to fix.
It says research goals should come from the community, not from outside experts.
How this fits with other research
Vassos et al. (2023) give a concrete example. They show how to swap deficit words like "low-functioning" for respectful terms such as "high support needs." Both papers push the same anti-ableist stance, but M et al. focus on language while J focuses on question choice.
D'Agostino et al. (2025) take the idea further. They spell out intersectional qualitative steps—like interviewing participants about identity and power—that ABA researchers can add to their designs. J sets the principle; D'Agostino et al. supply the recipe.
Shyman (2016) sounded an early warning. It argued that behaviorism itself can reinforce ableism if practitioners cling to the medical model. Symons (2023) answers that call by telling researchers to rewrite their agendas with anti-ableist eyes.
Why it matters
Next time you write a grant or thesis, ask self-advocates what bugs them. Swap your deficit question for one that chases social justice. You keep the science tight and you stop harming the people you mean to help.
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02At a glance
03Original abstract
In this issue, we have an invited perspectives paper by Dr. McDonald and colleagues on allyship and anti-ableism in intellectual disability research. The paper is intentionally located as a lead paper in this issue following our immediate prior special issue devoted to equity and diversity issues in intellectual disabilities research. For some of our readership, the totality of the papers and perspectives may be uncommon reading in the pages of a research journal. I am reminded, however, of an old but important distinction between the context of discovery and the context of justification. The day-to-day workings of an active research team are consumed most often with operations (getting the experiment to work) and context of justification activities—testing hypotheses, statistical analyses, inference generation, etc. We spend considerably less time operationalizing context of discovery activities—why are we asking the questions we are asking, where did the hypothesis come from in the first place, why this model assumption, etc. Some time ago Lapsley noted the following which still seems to hold today: Of course science is not done from the safety of bleachers; it is not a formalized transcendental activity that leads easily to didactic formalisms. Rather, science takes place in the ring. Critical discovery is the result of one's wrestle with problems that seem crucial from the vantage point of one's intellectual biography. Hence it is through narrative, vignettes, accounts of critical incidents and key decision-making points that provides the prism through which researchers wrestle with meaningful problems. (p. 2)I encourage you and your research teams to consider the points raised by McDonald and colleagues and recognize a central tenant of their message—perspectives change—so choose wisely the problems with which you wrestle and consider your own context of discovery that put you in the ring. After all, as Alice Wong notes in her introduction to Disability Visibility, "Staying alive is a lot of work for a disabled person in an ableist society" (p. xv). Wong's perspective is further underscored by Harriet Johnson's conversations some years ago with ethicist Peter Singer. Singer, for those of you unaware, believes and argues that it should be lawful under specific circumstances to kill individuals with severe intellectual impairments because, within his conceptual framework—his perspective—they are not considered persons. Assuredly, Johnson had a different perspective. In our—AJIDD's—own pages, it was not that long ago the topics of serious scientific inquiry included work questioning why mothers might have difficulty in giving up their "Mongol child" for placement. Perspectives change—stay committed to critical discovery—we are a journal focused on making scientific discoveries. Be open to different perspectives and your intellectual biography behind the problems you consider meaningful and for which it is worth getting into the ring.
American journal on intellectual and developmental disabilities, 2023 · doi:10.1352/1944-7558-128.6.397