Almost 84 per cent of over 25,000 American health workers preferred non-disabled people on an implicit association test, even though most scored low on self-reported disability prejudice, according to a study
published in May in Rehabilitation Psychology
. The study, led by Laura VanPuymbrouck, an occupational therapist and assistant professor at Rush University in Chicago, looked at the relationship between health workers' explicit and implicit attitudes about people with disabilities. "Bias against disability is so normalized that people with disabilities sometimes don’t recognize it, even when it’s happening, and providers don’t recognize it when they’re doing it," says Laura, who did her PhD in disability studies. We spoke about the study and possible ways to reduce disability discrimination.
BLOOM: Why was there a need for your study?
Laura VanPuymbrouck: Health-care provider bias has been recognized as a concern by a lot of different communities, and there's been a lot of actions taken by provider groups and hospitals to address it, but one of the voices that hasn't been included often is the disability community. We need to recognize that we have biases as a first step to addressing them. But because providers don't tend to think of the disability community as one of the marginalized or discriminated-against groups, that needs to be highlighted, and providers need to be educated.
BLOOM: How did your study work?
Laura VanPuymbrouck: We used a data set that's been in existence for years. It's a simple test you can take online that looks at your implicit bias for different groups. There's a disability association test that looks specifically at negative attitudes toward people with disabilities. This test is important because it evaluates that unconscious response to a group that people learn over a lifetime.
Organizations, in their efforts to assess provider bias, will often do an explicit test that's usually a paper test or survey. The person reads a question and consciously responds. They may have very good intentions and believe they have a positive attitude toward somebody, and they also understand a sense of political correctness in how they should respond, especially where discrimination toward a group is not socially acceptable.
The implicit test is designed so there’s no processing involved. The person doesn't have time to think about how they should respond, it's an immediate response to an image that represents disability. We looked at the differences in explicit compared to implicit test results, which is a very unique approach. It shows that most providers consciously believe that they have good intentions and positive attitudes toward people with disabilities, but implicitly or unconsciously they have negative attitudes.
The real problem is that a provider may think they're not biased, but when it comes to making recommendations to a person with a disability, those unconscious attitudes will work to inform the person's decision, especially in situations where the health worker might be pressed for time or doesn't have an opportunity to consciously reflect upon why they might be making the decision.
It's a really fun and educational test on the Internet called Project Implicit
at Harvard University. The screen flashes an image related to people without disabilities or people with a variety of disabilities, and you have to sort them into good and bad. After that, our study participants rate their preferences for people with or without disabilities on a seven-point scale.
BLOOM: What did you find?
Laura VanPuymbrouck: One of the strongest findings was that most providers are aversive ableist: they have low conscious negative attitudes towards people with disabilities but high unconscious prejudice. They're well-meaning and progressive in how they respond, but they still have biases that inform their thoughts and actions.
An interesting finding was that people with the lowest explicit and implicit biases were people who were younger vs. older; female vs. male; strongly liberal vs. strongly conservative; and they had friends, acquaintances or family members with a disability, or they had a disability themselves.
BLOOM: Were you surprised that the vast majority hold these negative automatic attitudes?
Laura VanPuymbrouck: No, I wasn't surprised by that at all.
Education of health-care providers in the United States is strongly informed by the medical model, and the social model might be introduced on one slide, in one class, across an entire program. There's a strong medical model in the United States that says disability is bad and sad, that living with a disability is something you should work to overcome, and that you should try to avoid it or cure it at all costs. Some of my other research shows that student biases toward disability get stronger and are reinforced throughout a curriculum.
The other reason why scores were so high is that students come into their programs with socialized attitudes of disability, and most people in society are negatively biased towards people with disabilities. If you were to do this test across all people, it would probably be relatively the same outcome.
BLOOM: Do we know how this unconscious discrimination plays out in the care people with disabilities receive?
Laura VanPuymbrouck: Not really. We can hypothesize, based on more in-depth study that's been done on negative bias toward people from different racial and ethnic communities. We can also look at more qualitative research where people with disabilities say: 'Yes, I face barriers. Yes, when I go to my provider's office, it's not accessible, I'm not examined on a table, and I'm not weighed because the equipment doesn't exist.'
There hasn't been a research study that looks at a health worker's implicit bias, and then evaluates their interactions with people with disabilities. It would be an amazing study to assess the interactions of providers who have higher bias or lower bias, to see what type of decision-making processes they have.
But that would require people to want to acknowledge that they are informed by biases, and that they do discriminate against people with disabilities, and once they've participated in the study, to look at yes, this does make my decision-making discriminatory. I don't see providers jumping on the bandwagon.
BLOOM: I saw an article in the journal Autism this month that looked at how an autism acceptance training influenced the implicit and explicit prejudice of non-autistic adults toward people with autism. They found the training didn't have any impact on implicit biases. So once we know that everyone has these biases, what can we do to change them?
Laura VanPuymbrouck: There’s not a lot of research out there that demonstrates that cultural competency training or any type of bias-reducing education program has an impact on implicit bias.
Something promising is that studies suggest it might be helpful to have research participants look at their implicit bias test results, and consciously go through the process of working with an individual to explore their specific response scores.
The other promising area of research requires a lot more work, it requires becoming partners with the disability community in multiple ways, and recognizing that they can be equals in knowledge when it comes to health and health care. Socializing and working on boards together are the kind of things that show some promise in lessening implicit bias. If you have a relationship with a person with a disability, you're more likely to have positive attitudes towards them.
Something I'd like to do is to videotape a provider with two patients who have the same issue, let's say diabetes, and one has a disability and the other doesn't. Then have the provider review their recordings to see how they might respond differently to the person with a disability in terms of animation and their recommendations. But nobody's doing that type of thing.
BLOOM: What can health organizations do to reduce disability bias?
Laura VanPuymbrouck: It's so important to recognize and reinforce that disability bias is normalized. It happens in one-on-one interactions with patients, and it happens within administrations in how they make decisions. Often disability is not even part of the conversation.
We see this in the U.S. with our response to the pandemic. People with disabilities who are institutionalized or in long-term care facilities are the last people to get personal protective equipment (PPE). In the initial surges, people with disabilities who live in the community and receive services outside of institutional settings also had a real challenge getting PPE, and many are still being overlooked. People with disabilities are assumed to be in an institution, they're not even considered to be living in the community and part of our everyday life.
Where I live in Illinois, we have a state emergency response plan and people with disabilities were not even in the language of our state policy. So in Chicago, one of the first things they did with our surge was to open a large conference centre with cots, but they didn’t consider any accessibility needs. Disability is not part of the mindset. You have to have someone with a disability in positions of decision-making within the administration in order to be represented.
BLOOM: How did you get interested in this work?
Laura VanPuymbrouck: I’m an occupational therapist and my whole career of 35 years has been focused on working with people with newly acquired disability to 'overcome' or 'cure' their disability, so I'm one of 'those guys.'
For most of my career I was working on addressing issues that were located in the individual and their impairment. But my eye wasn't turning to those socially constructed barriers, whether physical or attitudinal or policy-wise, that prevent or inhibit or exclude the clients I work with from participating in society like their non-disabled peers. I went through a raising of my own consciousness and realizing wow, this is a big deal, and I ended up going back and doing my PhD in disability studies.
My research focus looked at barriers to health-care access for people with disabilities who were strong advocates. These participants were leaders in the disability community. And even these leaders recognized that the barriers were so significant that sometimes they chose to advocate, and other times they chose not to. It's an exhausting experience to constantly have to advocate for yourself in, of all places, a health-care setting.
One of the biggest findings in my dissertation research was that there are constant micro-inequities and micro-aggressions experienced by people with disabilities in the health-care system. From that finding, I couldn't help starting to look at the providers themselves.
Co-researchers on this study were Heather A. Feldner at the University of Washington and Carli Friedman at the Council of Quality and Leadership.