As a deaf white male with cochlear implants, I am more able and welcomed to participate in academia than someone who navigates the same spaces in a wheelchair. I have the privilege to be able to enter and leave physical spaces at will without having to worry if the accessible entryways are truly accessible. I can use the restrooms without fear that a non-disabled person is camping out on their phone in the only handicapped stall. I have the ability to fly to attend conferences with peace of mind, without finding my wheelchair destroyed by baggage handlers with little to no consequences [1]. As a person with a compatible disability, I can help societies and institutions appear more equitable and diverse, without being a financial burden or inconvenience.
While the previous paragraph may sound harsh, the intention is to lend gravitas to a tiny fraction of the ableism that someone with physical disabilities experiences in academic life. Given the complexity of ableism, we must first learn how different agencies define disability in the U.S. and beyond:
- General definition: The Center for Disease Control (CDC) [2] defines disability as conditions of the body and/or mind that substantially limits the ability of the person to participate fully in activities and society.
- Legal definition: The passage of the American with Disabilities Act (ADA) [3] by Congress in essence builds on the general definition of disability by adding broad legal protections and banning discrimination against disabled people.
- Medical definition: The Social Security Administration (SSA) [4] emphasizes only medically recognized mental or physical disabilities that inhibits/prohibits “substantial gainful activity” for disability benefits.
- Health definition: The World Health Organization (WHO) [5] defines disability as a consequence of interactions between health condition(s) of a person with negative personal and environmental factors ranging from lack of social acceptance to inaccessibility of physical spaces.
Interestingly, disability inclusion and health equity for all people appear to be inseparable from each other in the WHO’s mission to improve health outcomes throughout the world. The concept of health equity is conspicuously absent in the U.S. definitions of disability, presumably because we only have a for-profit healthcare system. When combined with the obsession of productivity above all else and American exceptionalism of the contemporary age, the foundation of inequality plants the seeds for judgment of those who deserve more and those who deserve less, based on how much the status quo perceives them as a burden.
On the surface, it is easy to think that the disability community enjoys robust protections with the existence of the ADA, disability benefits programs, and more. While it is true that significant progress has been made, there are still many obstacles in the path of disabled people that prevent them from thriving under their own autonomy. Disability benefit recipients face stringent regulations that must be continually met to be eligible to receive a $700-$1,500 monthly check [6], and they can easily lose their benefits under certain conditions such as marrying their partner [7], [8]. In addition, it is still legal in the majority of the states for certified companies (under section 14(c) of the 1938 Fair Labor Standards Act of 1938) to pay disabled workers as low as 4-10 cents an hour, if justified through productivity metrics [9]. The combination of embedded means testing, lack of health equity, and a labyrinthine legal ecosystem produces the optimal conditions for systemic disability discrimination (ableism) to manifest.
Before we can ask what ableism could look like in academia and science, it is important to discuss briefly how disability as a marginalized identity is unique to others:
- Disability can happen to anyone at any time (from birth to old age) through various ways, including genetics, accidental injury, and viral infections.
- There are many distinct intellectual, emotional, and physical disabilities with a spectrum of severity that necessitates individual and distinct levels of accommodations, in which a “one-size-fits-all” approach is impractical.
- The struggles of many marginalized peoples are compounded by the stigma of the disabilities that they may have.
- Disabled people must endure a tremendous amount of unpaid labor and trauma just to exist; if they wish to pursue education and create a better life for themselves, they must endure even more. They must prove that they deserve the bare minimums of human dignity and rights that comes with being useful to society.
For a long time, academic institutions were viewed as a place of enlightenment and opportunities for which disabled people (and other minorities) could achieve a fulfilling life for themselves. With social media fostering the establishment of online disability communities, it soon became clear that many academic institutions were fraught with ableism and unreported ADA violations. In some ways, this failure to report is reminiscent of what we have seen in the past with Title IX cases [10], which hints at a potential pattern of institutional resistance to transparency. As to what the motive(s) could be, it is easy to speculate that there’s a strong financial and social incentive to sweep wrongdoing under the rug at the cost of individual lives and well-being.
When viewing life/physical sciences in academia through this lens, we can (hopefully) see how the slim odds of success is already stacked against those with disabilities, especially in graduate school and beyond. Under the publish-or-perish model with an ever-shrinking national budget for research and mounting pressure to secure more grants, there is little incentive for PIs to provide a healthy work and mentoring environment (i.e., accommodations) for disabled students and trainees, especially now that DEI initiatives are being culled from many institutions. Many conferences that went virtual during the COVID pandemic have now reverted back to face-to-face format because hybrid isn’t considered financially tenable, but somehow five-star hotels at tourist destinations are.
As alluded to in the beginning, these changes in accessibility affects every disabled person differently. When I lost my hearing completely over several years during graduate school, the only option that I had to restore my hearing was cochlear implantation . I rationalized the decision to pursue implantation as allowing me to continue to pursue my love of music and shows/concerts, but I cannot deny the pressure I felt to “consent” to a solution that made the least waves for myself. The burden was on me to make myself compatible once more in the ways that the academic status quo chooses to communicate, which is verbally and not through sign language. (Unfortunately, such a prolonged medical procedure and rehabilitation also led to even more challenges to face in the coming years [11], [12].) This is the consequence of the medical model of disability that puts the onus on the individual to fix what is “broken” inside them to appease societal norms. In contrast, the social model asserts that society has a moral and ethical obligation to provide equitable accommodations for everyone and to accept disabled people as whole and complete. Such a model would be extremely unpopular with exploitative systems.
There are multiple success stories of disabled scientists, and scientific progress as a whole would have been substantially impeded without their contributions. One of the most famous in recent times is the theoretical physicist Dr. Steven Hawking, known for his theories on black holes and other aspects of astrophysics. While we mostly see pictures of Dr. Hawking as older with complete paralysis, it is important to note that he still retained some mobility while he was making groundbreaking discoveries as a younger man, and that it would be several decades before his motor neuron disease completely claimed his mobility. He had already proven himself to be indispensable to academia early in his career, which justified the expense of any accommodations needed on his end. However, I can’t help but wonder – if his disease struck him much earlier and completely paralyzed him as an undergraduate student, would we be talking about Hawking radiation today?
If we truly want to make academia and science a safe space for disabled people, we must ask ourselves this: can we detect ableism when it happens, and how pervasive is ableism where we work? In an attempt to guide further understanding, I have provided several situations below for self-reflection:
- If a funded initiative to promote better STEM outcomes for women does not provide accommodations for disabled women because the grant agency never specified, are they truly supporting all women?
- Is it professional and legal for a professor to allegedly out a student as disabled and scream at them that he has every right to do so when they objected? If not, what would you think of the institution that enabled the professor to continue on with no consequences? [13]
- Imagine that some characteristic about you was declared pathogenic and a paper was published on gene-editing strategies to cure that “pathology” in a mouse model. How would you feel about this? [14]
- If you’re part of a marginalized group that share similar stories of repeated discrimination in the same workplace, how confident would you be if an internal committee made of non-marginalized members found no merit in any of the complaints? [15], [16]
- If you were to witness workplace ableism in the future, what would you do, if anything, to challenge it?
- If you became disabled tomorrow, do you feel confident that you would be supported in academia? Why or why not?
Despite the existence of several unique aspects to the disabled experience, the disability community shares a strong bond with other marginalized groups in the fight for equity and inclusion in society and academia. Even with the coalescence of a strong and connected disability community on social media platforms, there are still very few resources for dealing with ableism. Much like the whisper network at conferences, the only plausible strategy for most disabled people to avoid ableism is through word-of-mouth about who and/or where to avoid applying to. Even then, that does not always work and there is significantly less representation and advocacy for disabled graduate students and postdocs to help weather difficult situations.
What potential solutions exist for dealing with and dismantling ableism? It‘s an exceedingly difficult question to answer. Many of us might have heard anecdotally that academic institutions succeed in recruiting diverse student bodies and faculty to their campuses, but repeatedly fail to retain them. In addition, recruitment strategies of faculty of color appear to fall well short of achieving equitable numbers at the current rates over the next 25-30 years [17]. Therefore, I believe any successful solution for dismantling ableism must include fostering a sense of community among disabled faculty and allies from the local to the national levels. From there, we must grow the community into an organization capable of carrying out advocacy and mediation on behalf of disabled faculty, staff, and students at academic institutions. Crucially, the backing of multiple professional organizations and societies to such an endeavor would go far in lending legitimacy to the call for recruitment AND retainment of disabled people in academia.
Bibliography:
1.Wheelchair users face frustrations in the air: “I’ve had so many terrible experiences” – CBS News. November 24, 2023. Accessed December 18, 2024. https://www.cbsnews.com/news/airlines-mishandling-wheelchairs/
2.CDC. Disability and Health Overview. Disability and Health. December 12, 2024. Accessed December 18, 2024. https://www.cdc.gov/disability-and-health/about/index.html
3.What is the definition of disability under the ADA? | ADA National Network. Accessed December 18, 2024. https://adata.org/faq/what-definition-disability-under-ada
4.How Do We Define Disability? | The Red Book | SSA. Accessed December 18, 2024. https://www.ssa.gov/redbook/eng/definedisability.htm
5.Disability. Accessed December 18, 2024. https://www.who.int/health-topics/disability
6.Income Limits for SSDI Benefits. www.disabilitysecrets.com. Accessed December 18, 2024. https://www.disabilitysecrets.com/resources/social-security-disability/ssdi/income-limits-ssdi-benefits
7.The Arc of the United States. For People With Disabilities, Getting Married Can Mean Losing Access to Critical Benefits.; 2023. Accessed December 18, 2024. https://www.youtube.com/watch?v=rD_R3mXdpaM
8.NowThis Impact. How Marriage Puts Disabled People at Risk of Losing Their Health Care Benefits.; 2022. Accessed December 18, 2024. https://www.youtube.com/watch?v=gbs9mGP9GCg
9.Manansala M. Disabled Workers Can Be Paid Less Than $7.25 an Hour. It’s Time to Change That. National Partnership for Women & Families. August 7, 2023. Accessed December 18, 2024. https://nationalpartnership.org/disabled-workers-paid-less-than-725-time-to-change-that/
10.Students detail problems with colleges’ Title IX processes. Higher Ed Dive. Accessed December 18, 2024. https://www.highereddive.com/news/students-detail-problems-with-colleges-title-ix-processes/596796/
11.Klusza S, Hears TM. The Sounds of Silence. The Mind Hears. August 11, 2021. Accessed December 19, 2024. https://themindhears.org/2021/08/11/the-sounds-of-silence/
12.Klusza S, Hears TM. And I knew the silence of the world. The Mind Hears. August 25, 2021. Accessed December 19, 2024. https://themindhears.org/2021/08/25/and-i-knew-the-silence-of-the-world/
13.Hopkins doesn’t care about the safety and privacy of disabled students. The Johns Hopkins News-Letter. Accessed December 18, 2024. https://www.jhunewsletter.com/article/2021/11/hopkins-doesnt-care-about-the-safety-and-privacy-of-disabled-students
14.Yeh WH, Shubina-Oleinik O, Levy JM, et al. In vivo base editing restores sensory transduction and transiently improves auditory function in a mouse model of recessive deafness. Science Translational Medicine. 2020;12(546):eaay9101. doi:10.1126/scitranslmed.aay9101
15.Students claim discrimination led to their dismissal from School of Education Clinical Mental Health Counseling program. The Johns Hopkins News-Letter. Accessed December 18, 2024. https://www.jhunewsletter.com/article/2022/03/students-claim-discrimination-led-to-their-dismissal-from-school-of-education-clinical-mental-health-counseling-program
16.Flaherty C. Do No Harm. Inside Higher Ed. Accessed December 18, 2024. https://www.insidehighered.com/news/2022/04/25/former-counseling-students-accuse-johns-hopkins-bias
17.Matias JN, Lewis NA, Hope EC. US universities are not succeeding in diversifying faculty. Nat Hum Behav. 2022;6(12):1606-1608. doi:10.1038/s41562-022-01495-4
About the Author:
Assistant Professor of Biology, School of Sciences, Clayton State University
