Editorial: Making Space for People With Disabilities: Part of the Diversity Matters Series

Abstract

We at EJN are pleased to present the next installment of our Diversity Matters series. Our position is that Diversity Matters—it is only when we can dissolve the hurdles and challenges that keep us from achieving an inclusive scientific community that we will fully gain from the entire spectrum of innovative ideas and creative thought in the scientific enterprise and thus serve the entire gamut of humanity.

To support this, we coalesced on the idea that EJN will run a series where we present the work of organizations across the world whose primary commitment is to enhance diversity, equity, and inclusion in the neurosciences. The first editorial focused on the ALBA network, a global initiative to foster equity and inclusion in the brain sciences for all underrepresented groups in neuroscience, including gender (Helmreich et al. 2021). The second installment focused on Black in Neuro (Smith et al. 2022). This current editorial is inspired by the ALBA Disability and Accessibility Working Group.¹ The actions of the ALBA Network are conceptualized in working groups which cover different aspects of diversity or underrepresentation. This group aims to organize initiatives to raise awareness and increase the visibility of scientists with disabilities and to encourage best practices within scientific institutions to ensure equal access to opportunities.

FENS and EJN hold a fundamental core belief that all individuals, irrespective of personal identities, should be treated with dignity and respect and that an individual's choices should not be limited by structural or cultural barriers. Providing equity, reducing inequities, and removing obstacles—both tangible (brick and mortar) and intangible (biases and prejudices)—allows space and equal opportunities for everyone, opportunities that fit their individual preferences, interests, and skills.

At the heart of this series is another core belief that Diversity Matters, that increasing diversity increases the quality of science (Swartz et al. 2019; Willis et al. 2023; Helmreich et al. 2019). Having more diverse participants in the identification and development of a hypothesis, and in the interpretation of data and results, leads to more diverse perspectives, more creativity, and better questions, all of which lead to better science.

Unfortunately, the current (academic) Science, Technology, Engineering, and Mathematics (STEM) culture does not feel welcoming to everybody (Pester et al. 2023; Lerback et al. 2022; Jilani 2021) and is challenging for many (Hammoudi Halat et al. 2023). This selection pressure may narrow the field to a particular and select type of person, with specific perspectives, experiences, and viewpoints. Ideally, there should be room for everyone at the table—room for everyone's input, experience, strengths, and perspectives—which ultimately strengthens the scientific enterprise (Thorp 2023).

An undercurrent is that jobs in science are brutally competitive. Sometimes people with disabilities, although capable, simply cannot be as competitive in the traditional sense as nondisabled researchers. This perhaps leads some to the sentiment “if you can't take the heat, get out of the kitchen.” An alternative approach might be to think about lowering the heat in the kitchen. This, however, is not an easy task. How would the paradigm shift be accomplished? Could traditional evaluation criteria be shifted away from traditional goal posts, such as publications in prestigious journals and grants? Could adjustments be made in timelines for evaluation? Who should pay for accommodations? Who are the “powers that be” that could accomplish this? What is the process to reconcile inclusivity goals with real world practical issues like shrinking budgets, size of effort/scope of infrastructure changes, and limited resources? Political policies for inclusion and diversity, such as those for gender equity, could help to mitigate this problem. What happens if a sponsoring government suddenly changes its priorities?

The working definition of disability used by the ALBA working group is: the interaction between a researcher's physical, sensory, cognitive, developmental, mental health and/or other conditions or differences, and the contextual and environmental factors within which they work and live, which together result in limitations to their functioning and participation. These can be, but are not limited to, visible or invisible, sensory, mental or physical, chronic, or temporary disabilities. It is currently estimated that 27% of adults in Europe have some type of disability (Council of the European Union 2025). The estimate is the same in the United States, making it the single largest minority group in the country (NCBDDD 2024). It is also important to note that in addition to being chronic, temporary, or cyclical, disabilities' incidence increases with age.

In the United States in 2019, the unemployment rate among scientists and engineers with a disability (5.27%) was higher than the national unemployment rate (3.70%). Fewer scientists and engineers with a disability are employed in Science and Engineering (S&E) positions (48%) compared to scientists and engineers without a disability (58%). In addition, doctorate recipients in S&E fields in 2019 had a lower disability rate than those in non-S&E fields. By 2023, some of these differences had been reduced but their proportion in STEM fields remains lower than in the population as a whole (National Center for Science and Engineering Statistics 2023; Frueh 2023). Data tables can be found here.²

In 2022, the US National Institute of Health (NIH) launched programs supporting persons with disabilities. Their report started off by stating: “People with disabilities are profoundly underrepresented in the biomedical and behavioral research workforce. Pervasive barriers such as ableism (i.e., the belief that people with disabilities are flawed and less valuable than nondisabled people), bias, and lack of accessible accommodations, prevent people with disabilities from participating fully in the scientific workforce.” Details were outlined here: National Institutes of Health Advisory Committee to the Director Working Group on Diversity Subgroup on Individuals with Disabilities REPORT December 1, 2022. On January 29, 2025, this document was no longer available online at NIH.gov, but it can be found here.³

On January 20, 2025, Donald Trump, as newly inaugurated President of the United States, issued executive orders to terminate “all discriminatory programs, including illegal DEI and ‘diversity, equity, inclusion, and accessibility’ (DEIA) mandates, policies, programs, preferences, and activities in the Federal Government, under whatever name they appear” (The White House 2025). This elimination of DEI initiatives includes the NIH (Kassam 2025). As of January 23, 2025, most documents from the diversity.nih.gov address have been removed or blocked. Trump has also proposed withholding federal funds from institutions that support DEI.

One stated goal of eliminating DEI initiatives is to have hiring for (federal positions) based on merit. From the executive order: “Federal employment practices, including federal employee performance reviews, shall reward individual initiative, skills, performance, and hard work and shall not under any circumstances consider DEI or DEIA factors, goals, policies, mandates, or requirements” (The White House 2025).

One fundamental question is: How can merit be disassociated from opportunity? How can someone display “merit” if they have never had the opportunity to participate in the activity?

Obviously, this is a time of great worry. The American Civil Liberties Union has stated “These orders represent a deliberate attempt to undo progress on diversity, equity, inclusion, and accessibility and create new barriers to opportunity” (Moore 2025). At the time of this writing, the legality and execution of these executive orders is being contested. It is unclear what potential repercussions may be.

Meanwhile, the European Union expressed very similar sentiments to the 2022 NIH report (Eurodoc 2020). Institutional support is pledged:

Fortunately for the neuroscience community, in addition to large institutional efforts mentioned above, there are other forces for change led by smaller organizations, such as the ALBA Network. Founded in 2019 by a group of leading neuroscientists, the ALBA Network aims to promote equity and diversity in the brain sciences. ALBA started the Disability and Accessibility Working Group in 2022. This group adds tremendous value by sharing their lived experience perspective at ALBA events at conferences⁴ and organizing further outreach (detailed below).

The following are some voices from that group:

What moves us: our personal perspectives, why we wanted to make this working group, and what we wish could change.

C.O.M.: In 2021, I became an ALBA member. I believe in equality for everyone, regardless of race, gender, religion, physical, or mental differences, or any other convictions people may have. When I participated in my first ALBA general assembly, I remember thinking: “There is no equality at all among people with disabilities anywhere … and the neuroscience community is no exception! So, why not create a group that would take care of this issue inside the ALBA Network?”

In fact, there is no full equality among people with disabilities, and this extends to the neuroscience community, like many other fields. Individuals with disabilities often face significant barriers in terms of accessibility, representation, and opportunities in education, research, and the professional world. In neuroscience, this can manifest in several ways that limit the inclusion of disabled individuals in leadership or decision-making roles.

Society takes care (sometimes) about creating accessibility infrastructure for people in wheelchairs or other physically visible disorders, but that may be the extent of it. What about every other person with invisible disabilities? What does society do, except for saying “You can do it!” and expect them (us) to perform as well as if we did not have a disability (Pulrang 2019)?

Besides other serious invisible illnesses, endometriosis, vertiginous syndrome, thyroid disease and back injuries, I have had type 1 diabetes for almost my whole life (~20 years). It's a chronic, 24-h by 7-day self-care disorder, with a lot of lability in glucose levels affecting every single metabolic pathway.

I am a very well controlled diabetic patient, but I still suffer daily from unexpected changes in glucose levels (as does every diabetic). Many times, I (we) feel a lack of strength to complete the most ordinary daily tasks. But like any other invisible disability, either physical or mental, nobody “sees” these fluctuations, because our facial expressions may not indicate that our bodies and/or intellects are suffering.

Competition is extremely high in academia, and it can be very difficult to create and maintain a successful career (even more in Portugal, where the positions in academia are scarce). In my country, a disabled person must have above 60% of incapacity to be able to apply for the incapable positions in scientific grants/researcher positions. It is assumed that (people with disabilities, in which disabilities do not reach a high degree of incapacity), irrespective of our daily struggles, should produce as much scientific output and complete other tasks similar to able-bodied people, in the same amount of time. Is it fair? … Certainly NOT! It is not right that we must work much harder to get the same as a nondisabled person. But unfortunately, that is what we have now, and we want to change it.

So, having all these thoughts in mind, I suggested the creation of a Disability and Accessibility Working Group inside ALBA. I was shaking, very anxious when I proposed this issue to everyone in the—virtual—room, as I presumed that nobody would accept my idea … but it was unexpectedly welcome! And I feel blessed for being part of this group and for meeting such amazing (and totally capable) people!

As a group, I sincerely hope that we can make a difference by (1) talking about our disabilities in public, without shame or stigma; (2) describing our struggles as disabled neuroscientists, either in our places of work or in building our careers; (3) propose changes in regulations that would respect the different production capabilities, allowing disabled neuroscientists to succeed in their careers; (4) and, as part of the solution, give small tips that aim at promoting improvements in disabled neuroscientists lives.

R.V.M.: Having been in academia for over a decade now, I have witnessed first-hand how hard it can be to build a career in research even when fully able, let alone when you suffer from a disability and/or chronic illness. Due to the inaccessibility of an academic career to many people, there is also a distinct lack of visible role models for younger researchers to look up to, and so the cycle continues—people cannot be what they cannot see. By joining this group, I hope that we can start to challenge the status quo by increasing the accessibility of a career in academia to researchers who have been “left out” by the system, not only to the benefit of the individual researcher but also to the benefit of universities—by improving the retention of diverse and talented scientists, who may have been otherwise excluded.

D.R.A.: I have multiple disabilities, all invisible, that I talked about in Episode 3⁵ of our “Breaking down the ivory tower” webinar series.⁶ In my experience, there is generally a lack of awareness of how having a disability or chronic illness can make so many aspects of an academic job more challenging. An academic career is not an easy undertaking for anyone, and for me, I choose to structure my nonwork life to allow me the energy to work, which often means prioritizing rest on days off even when I'd rather do other things. As someone with lived experience of these challenges, I hope that our ALBA working group can both increase awareness of these challenges to the rest of academia and promote change.

Building on what R.V.M. said above, there is also a lack of role models in academia of people with invisible disabilities due to the stigma. The invisibility of some disabilities can also be challenging: When stigma means you do not want to be “out” about your disability, how do you explain not keeping up with work demands or how do you ask for accommodations?

I am grateful to be a neuroscientist in Canada, where there are some real steps towards making that paradigm shift mentioned above, to more fully provide researchers with disabilities the opportunity to do their best work. The Canadian Institutes of Health Research (CIHR) has been collecting self-identification data on disability since 2018, and found that Principal Investigators (PIs) with a disability have a lower success rate for grants than PIs without a disability (CIHR 2024). To address this imbalance, CIHR introduced an equalization process in 2024 that aims to increase representation from disabled researchers by ensuring that the proportion of funded grants awarded to disabled researchers is at least equal to the proportion of applications received from them. This objective is balanced with ensuring scientific merit based on the grant review process by establishing an “equalization zone”—that is, equalization is achieved by selecting applications from disabled researchers that although ranked outside the top (funded) 10% are still within the top 25% of all applications. This strategy acknowledges the challenges that neuroscientists with disabilities face and the impacts this may have on our career trajectory. Something I also think is really important is that this strategy does not require us to prove we have a disability or that we are disabled enough (whatever that means) in order to qualify. It is based on self-identification, with trust between the granting agency and researchers that we as a community of researchers will act with integrity and honesty.

Another neuroscientist, anonymous: My interest in disabilities has grown throughout my academic career. As an undergraduate student, I worked part-time at the university's disability office; it was such an enriching experience. But my main interest has been in mental health, especially as a result of having struggled with depression myself in the past, and living with anxiety my whole life. During my Ph.D., I started talking more openly about my own struggles with mental health, including on social media and on podcasts. Many of my peers started reaching out and opening up about their own struggles, many sharing how they had been fueled to talk about their mental health and seek help by listening to me share my experiences. Especially during my Ph.D., I saw colleagues taking time off for mental health reasons (most struggling with depression), and I even saw peers leaving academia for similar reasons. Academic life is hard; prevalent factors that can be damaging to mental health include high pressure, limited resources, competition, overworking culture, abusive and toxic environments, uncertainty and lack of job security, financial stress, isolation, and difficulty with balancing personal, social, and family life, to name a few.

N.F.-C.: I have been dealing with a physical disability throughout all my life due to rheumatoid arthritis. I have always been aware of the barriers and difficulties that people with physical disabilities struggle with on a daily basis and that are not perceived by the rest of the society. When I started doing research on migraine and psychiatric disorders, I became aware of the lack of understanding in society of mental health, the importance of visibility to fight stigma, and the difficulties that people with nonphysical disabilities have to deal with. I was very glad when I learned about the ALBA Network, as fighting against any source of discrimination has always been very important in my life. I was given the opportunity to talk about disability and my personal experience in Episode 6 of the ALBA Diversity Podcast—Season 1.⁷ When C.O.M. contacted me with the idea of creating the Accessibility and Disability group, I thought it was a great opportunity to work on gaining visibility and awareness of disabilities and push society forward in fighting discrimination.

H.M.: I was diagnosed with bipolar disorder type 1 with psychosis and mixed episodes in 2017. It was a life-changing diagnosis that left me fearful for my future and career. I knew very little about bipolar disorder, except that it was serious, highly stigmatized, and incurable. I was reluctant to enter a career in science, as I was told when diagnosed I would not be able to hold down a full-time job. But ultimately, I decided to turn my awful lived experiences into something worthwhile by dedicating myself to studying the condition that had changed my life. When I started my Ph.D. in neuroscience, I noticed that despite studying the brain, many scientists were clueless as to what bipolar disorder was and how it affected my day-to-day life. It did not take long for me to realize the benefits of being open and educating others about my condition. I was eager to take my advocacy to the next level, and thankfully came across ALBA at a conference. Since joining the Disability and Accessibility Working Group, the number of opportunities I have had to share my story has exploded. ALBA is an incredible community of like-minded individuals (and role models) who are dedicated and passionate about improving equity and diversity for all, and I feel very lucky to be part of it. In the 7 years following my bipolar disorder diagnosis, I also received diagnoses of C-PTSD, anxiety, and endometriosis, but I was not fearful of how they would affect my career. Instead, because of the support I received from ALBA and beyond, I became more motivated to speak loudly and openly about my experiences, and hopefully continue to improve accessibility in neuroscience. I wish for neuroscience to be a more compassionate institution, where disabled scientists can ask for reasonable accommodations and expect them to be accepted, and believe that our work is helping achieve this dream. I also hope to see institutions and supervisors dedicated to providing a nurturing, safe environment for disabled neuroscientists to flourish and produce amazing work.

Another author's (D.L.H.) lived experience with diversity/disability: Starting out, as a young, naïve scientist and human being, I came from a culture where being smart and working hard could solve most problems, or at least give you the illusion that it could. I'm sure that this reflects being raised with white privilege and living and working in academia (even as a female scientist, it felt to me that the previous generation had done much of the hard work; shout-out to my mentors). But, as a postdoc, I was diagnosed with Multiple Sclerosis. A huge life-shock and game-changer. Among many changes, I was “othered,” removed from the dominant class and forced to live with limitations, particularly as symptoms progressed. Hard work and being smart did not protect me, or prevent “bad” things from happening. Factors that I could not control, that I wasn't even aware of, made a major life decision for me. Not denying that I still did not benefit from white privilege and life in academia—I had access to top-notch health care, family resources allowed me to work part-time, as did the flexible nature of some aspects of academic science. Nonetheless, I became much more aware and cognizant of people whose choices were curtailed by real-word barriers, stigma, and prejudices. I am pleased to participate in the diversity matter series, helping to shed light on some uncomfortable but important topics.

R.V.M.: As part of the activities of the Disability and Accessibility Working Group, we decided to produce a free webinar series entitled “Breaking down the ivory tower” (see endnote 6). In this series, we aimed to help bring down the ivory tower of ableism in academia, one extraordinary neuroscientist at a time. We invited a diverse range of neuroscientists who identify as having a disability to present their research, as well as talking about their scientific career and how they have faced challenges related to their disability. The webinars were broadcast live on YouTube to increase accessibility and were also recorded.

D.R.A.: Other actions have included developing a set of resources that can guide individual researchers, institutions, and other stakeholders to increase accessibility to neuroscience research careers for those with disabilities. These are available on the fabulous ALBA Network website.⁸ And we are working on adding many of these to the ALBA Declaration.⁹

C.O.M.: We also chose to present some of the resources mentioned above, under the form of short videos where we first introduce ourselves and our disabilities and then suggest small tips that can dramatically change the lives of disabled people. Some of those tips will be referred to next. These videos can be found on the ALBA website¹⁰ and social media channels (YouTube, Facebook, Instagram, X, Linked In, Bluesky, and Mastodon). The core message of this series is to emphasize that even small actions can make a real difference.

R.V.M.: Kindness, consideration, and open-mindedness. It does not take much to treat others with kindness and respect, and we need to create working atmospheres that are free of judgment. Consideration of others' needs can be something as simple as letting group members work to their own schedules (e.g., medical appointments often occur during the day) or using colorblind-friendly color palettes in presentations.

Anonymous: Small changes can make a huge difference to inclusion. A few examples include (1) listen, show empathy, and respect different perspectives and experiences; (2) use clear vocabulary, keep text clear, concise and formatted simply; (3) use dyslexia friendly fonts (i.e., sans serif fonts, such as Arial, Calibri, Helvetica, Tahoma, or similar), at a reasonable size (typically at least 11 or 12pt) and space between lines; (4) add alternative text to images; and (5) include subtitles on videos and provide transcripts.

D.R.A.: When organizing events or conferences, having shorter days or ample breaks, ensuring there is seating available (even in “standing” events such as poster sessions), and offer DEI travel awards to be inclusive of researchers with disability/chronic illness who often have additional costs (e.g., needing to arrive early to recover from travel, staying at more expensive hotels to accommodate their needs, and traveling with someone).

C.O.M.: We should be given extended times for applications and more years between career levels. Also, coordinators of groups should be totally permissive in the work, for example, by letting people work at home whenever possible so that they can manage their own schedules.

Now, a tip for people living with a disability: Do not try to hide a disability if you face it in your life. If you want others to have kindness, understanding, and respect, it's part of your job to tell others how you feel about that. The stigma halt should begin in ourselves.

N.F.-C.: Do not assume that people with disabilities cannot do something or need help. Often society puts limits on people with disabilities, and these limits often involve an extra effort that people with disabilities have to deal with. Try to create an environment in which this can be spoken openly, and anyone can ask for help if they need it, mutual support is important.

H.M.: If you have a disabled employee/student under your supervision requesting assistance, ask what help they need, rather than make assumptions. For instance, I tend to have the most trouble with the physical effects (e.g., fatigue and reduced immunity) of my psychiatric illnesses or side effects of my medications (e.g., nausea and headaches) rather than acute symptoms. I personally benefit from a bit of flexibility, as there are often days when I struggle immensely with lack of energy and other days I can work overtime without trouble. If the person under your supervision asks for reasonable accommodations that do not affect work output, such as needing flexible starting hours or occasional days from home, please be considerate.

R.V.M.: No one should be punished or penalized for having a disability. Life is difficult enough, without the odds being further stacked against oneself. Neuroscience must become more accessible to researchers with a diverse range of abilities or risk losing bright and innovative scientific minds.

Anonymous: I dream of a world without stigma, where everyone can bring their full self to work, and where opportunities are created and resources are provided for everyone to contribute to and excel in science.

D.R.A.: I hope that fellow academics will develop the awareness that a significant number of their colleagues and trainees may be dealing with disabilities that they cannot see—and that hopefully this awareness brings with it kindness, compassion and respect—and active accommodation.

C.O.M.: “Everyone has something,” Philip Haydon said in Episode 2¹¹ of the “Breaking down the ivory tower” webinar series. So, please respect other's needs. Try to see the person in front of you without judgments and imagine being in their situation. There is no person (at least that I met) working in neurosciences that is lazy or does not work because they do not want to! Sometimes, the time of others is just different from yours … Simply respect that. Prof. Hayden also mentioned that he always brings his life's motto “I can, and I will!” We all have that motto always present in our lives (I am sure)! Sometimes, we just need a little bit of help from others to get there.

N.F.-C.: To fight discrimination and pursue equality—there is still a long way in which awareness and actions are needed in society.

H.M.: Bigotry and ignorance ultimately hold back scientific progress. Neuroscientists with disabilities can provide novel perspectives that lead to groundbreaking research and have voices that must be heard.

Some specific solutions to the problem are mentioned in the above statements and videos from the ALBA Network working group. Incorporating principles of universal design in laboratories could help. Additional solutions and remedies have been outlined by other authors (Duerstock 2006; Mattison et al. 2022). Notably, many adjustments for disabilities have been adopted by many able-bodied individuals, such as closed captioning, and others from our not-so-recent experience with the pandemic, that is, zoom meetings, flexible work schedules, and remote work.

At an individual level, one specific strategy adopted by some living with a disability and/or chronic illnesses is the spoon theory. It is the recognition of finite resources (how many spoons you have) and a strategy to allocate and communicate them. Included in the metaphor is the sense that able-bodied people wake up with enough spoons to get through a normal day, while this may not be true for individuals with a disability (Miserandino 2003).

Another force for change in the sciences are smaller grassroots organizations such as @disabledinstem.bsky.social. This platform was established by a scientist with a disability, who has also written about empowering scientists with a disability through mentorship (Paparella 2024).

The authors would also like to acknowledge that much of this is personal choice. What type of job are you seeking? What is the best option for you? Are you able to, or do you desire to, advocate for yourself? Should you disclose your disability (if invisible)?—and if so, when? What type of support can you expect from your institution (Yerbury and Yerbury 2021)?

Diversity Matters.

Catarina Oliveira Miranda: conceptualization, writing – original draft, writing – review and editing. Rhiannon Victoria McNeill: conceptualization, writing – original draft, writing – review and editing. Donna Rose Addis: conceptualization, writing – original draft, writing – review and editing. Noèlia Fernàndez-Castillo: conceptualization, writing – original draft, writing – review and editing. Heather Macpherson: conceptualization, writing – original draft, writing – review and editing. Mathilde Maughan: project administration, writing – review and editing. John J. Foxe: conceptualization, supervision, writing – review and editing. Dana L. Helmreich: conceptualization, project administration, writing – original draft, writing – review and editing.

The authors declare no conflicts of interest.