Disability-Inclusivity Resources

A Note on the Language Used in these Guides

In these guides, I've used so-called "identity-first" language (e.g., "disabled person") rather than "person-first" language (e.g., "person with a disability"). Both forms of language are currently in accepted use, though many disability activists and disabled individuals (myself included) have moved toward a preference for identity-first language for many reasons, and some even have a disdain for person-first language. When speaking to or about an individual, you should always use the language preferred by that person. When  speaking about certain communities, you should always use the term overwhelmingly preferred by that community. For instance, the Autistic, Blind, and Deaf communities currently overwhelmingly prefer identity-first  language. If you don't know, it is best to ask the community of people whom you are talking about, or you may need to choose to mix identity- and person-first language if this is not possible and if there is no clear guidance from that community as a whole. If you are speaking about an individual, always use that person's preferred term if it can be ascertained.

External readings on the growing preference for identity-first language and the importance of engaging your specific communities when choosing language:

Does Language Matter? Identity-First Versus Person-First Language Use in Autism Research: A Response to Vivanti - PMC (nih.gov) 

I am Disabled: On Identity-First Versus People-First Language (thebodyisnotanapology.com) 

Identity-first vs. person-first language is an important distinction | Association of Health Care Journalists (healthjournalism.org) 

Person-first language: Noble intent but to what effect? - PMC (nih.gov) 

IFL vs. PFL: my preference. A Brief Word On My Preference for… | by zipporah arielle | Medium 

Using Identity-First Language About Disability (themighty.com) 

Autistic Hoya — A blog by Lydia X. Z. Brown: The Significance of Semantics: Person-First Language: Why It Matters 

What is Identity-first Language? | AUsome (ausometraining.com) 

Person-First vs. Identity-First Language – Spectrum Connections (spectrum-connections.org) 

Person-First vs. Identity-First Language (ku.edu) 

Inclusive Language Guidelines (apa.org) 

General principles for reducing bias (apa.org) 

Dwyer P, Ryan JG, Williams ZJ, Gassner DL. First Do No Harm: Suggestions Regarding Respectful Autism Language. Pediatrics. 2022 Apr 1;149(Suppl 4):e2020049437N. doi: 10.1542/peds.2020-049437N. PMID: 35363298; PMCID: PMC9066426.

Kristen Bottema-Beutel, Steven K. Kapp, Jessica Nina Lester, Noah J. Sasson, and Brittany N. Hand. Avoiding Ableist Language: Suggestions for Autism Researchers. Autism in Adulthood.Mar 2021.18-29. http://doi.org/10.1089/aut.2020.0014 

More Coming soon


Guide for Planning Accessible Academic Conferences

Authors: Kathleen F. Mittendorf, PhD; Liann Jimmons, MS, CGC

Physical Access to Conference City

1. Ensure your hotel blocks have an adequate number of wheelchair / physical disability accessible rooms for the number booked for attendees. This requires collecting access information needs on your registration form and repeated communications with the hotel. 

Why: For many people, getting assigned a non-accessible hotel room it will make it literally impossible for them to care for themselves. Depending on hotel design, they may not even be able to enter their room.

2. On the conference website and in conference materials, you should offer information on accessible restaurants in the vicinity of the conference center and whether they offer accessible restrooms; only book conference-sanctioned social events at restaurants or meeting places that are fully accessible.

Why: Many are not aware of this but buildings built prior to the ADA do not necessarily need to offer accessible entrances and restrooms, depending on the amount of renovations that would be required.

General Physical Access to and within Conference Center

3. Provide information on the expected travel distance by foot or wheelchair from the conference hotel to the conference center and between sessions within the conference center in advance of the conference (e.g., on the conference website).

Why: This provides critical information on what mobility equipment disabled attendees need to bring

4. Offer electric chairs or carts (as a grocery store would) to disabled attendees with mobility disabilities. If you cannot offer electric chairs, you should provide information on where to rent these in the city of attendance. Many larger cities have rental options for wheelchairs.

Why: Electric chairs are not readily accessible for many due to cost and airlines frequently damage them, making individuals reluctant to travel with them even if they do have them.

5. Add clear directions in the conference materials and in the conference center to all accessible and gender neutral bathrooms.  Preferably, as much as possible, conference centers that have several accessible and gender neutral bathrooms should be chosen; these restrooms should be available on all floors and reasonably spaced throughout the conference center.

Why: A number of available restrooms should exist because lines can form between sessions; restrooms should be easy to get to with minimal travel because of time constraints between sessions and to minimize strain on disabled participants who already need to travel long distances.

6. Create a clearly labeled disability access lane (using tape or other on-floor delineation) that functions like a bike lane on roads in the conference center for individuals who need to walk slowly or without being shoved.

Why: There often walkers who push past disabled attendees, sometimes knocking them off balance; it can also be difficult to navigate crowds because of space limitations.

7. Provide quiet rooms within the conference center.

Why: For Autistic and other neurodivergent attendees, quiet rooms allow them to take breaks from the busy and loud conference center that might otherwise trigger great distress.

8. Provide virtual attendance options and nursing rooms in the conference center for nursing parents.

Why: Many lactating parents nurse or pump for two years or longer after the birth of a child, and many begin attending conferences within months of the baby's birth or initiation of lactation. For those who need to pump, rather than nurse, no existing legal protections protect pumping in public. 

Presentation and Poster Presentation Access

9. Provide ASL interpreters and live closed captioning – live closed captioning should be available to in-person and remote attendees, in the age of COVID.

Why: Not all people can hear talks; not all people who are Deaf or Hard of Hearing can speak ASL.

10. Assume your speakers may need a ramp to the stage and provision one.

Why: Disabled speakers exist and you may not be aware of their mobility access needs; provisioning stage ramps ensures you will not put speakers in an inaccessible situation.

11. Provide optional seats for poster presenters and provide an option to request a poster board lower to the ground for presenters utilizing optional seats or wheelchairs. If possible provide adjustable poster boards to all presenters 

Why: Individuals with mobility disabilities who do not use chairs may not be able to stand for the length of a poster presentation. Seated individuals, including those with wheelchairs, need to be able to present from a poster at their level. Providing adjustable poster boards to all presenters allows them to lower their poster when presenting to a seated individual.

12. Make poster aisles at least triple the width of a wheelchair accessible passage

Why: Poster aisles often become crowded with viewers and wheelchair users and others using mobility aids may not be able to pass through busy aisles and gain equal access to popular posters

13. Include guides for speakers on creating colorblind and visual disability friendly talks (high contrast, larger font size, colorblind friendly color schemes) and encourage adherence

Why: Scientific figures often communicate important concepts through the use of color-coding and visual elements. 1 in 10 people with XY chromosomes is at least partially colorblind.

14. Offer guides on creating slide image descriptions and make these available virtually prior to the conference. Request all presenters provide slide image descriptions for all slides.

Why: Blind and low-vision attendees as well as individuals with certain visual processing disabilities rely on image descriptions to access information presented only visually. Many presenters rely on visuals to communicate certain points and do not actively describe the visual aloud because of presentation time constraints.

15. Provide an app to view slides and image descriptions in real time on a personal device during the session; the app should be screen reader accessible

Why:  Allows Blind and low-vision attendees to zoom and better see figures in large conference rooms and access image descriptions; allows attendees who may have had to take a break from the conference or attending virtually to fully access the presentations.

General Access

16. Add information about accessibility/disability respect in the conference code of conduct.

Why: Attendees often push past and cut in line in front of visibly disabled people to take elevators and accessible bathrooms. This culture is something conferences should clearly decry.

17. COVID-19-related access: Continue to offer hybrid conference options with virtual attendance capabilities; require masking in your public spaces; offer hand sanitizing and tissue stations; choose large conference venues with adequate ventilation; offer spaced seating sections; separate places where eating is permitted, and provide outdoor eating spaces.

Why: Mask mandates have been lifted while access to preventive options like Evusheld remains limited for immune-suppressed individuals for whom the vaccine may not be effective and who remain at high risk for serious illness from COVID. COVID continues to circulate in the US in high numbers, and some counties and states still recommend masking in public during high levels of community transmission though no mandates are in place. However, community transmission data lags behind actual transmission numbers, and therefore serves as a delayed proxy. Immune-suppressed individuals who may need to attend a conference for full participation need indoor masking policies in place. Masking remains the most effective non-invasive measure to prevent COVID spread. Requiring masking at your conference will allow their full participation. If possible, provide masks at the door for individuals who may forget their masks, and have staff enforce the policy. 

Last updated: 1/3/2023

18. Provide an option to request additional accommodations during registration, directly follow-up with these attendees, and do everything in your power to meet their needs.

Why: This is a non-exhaustive list, and people may have individual access needs not covered by traditional accessibility accommodations.

19. Establish a channel of response for access requests made by disabled attendees once at the meeting and train meeting staff on these channels and how to respond to these requests

Why: It may not be possible to predict every barrier faced by your disabled attendees, and barriers may arise -- such as inadequate hotel accessibility -- despite best efforts to prevent them. Disabled attendees should be able to expect an adequate and positive response from meeting staff to help them find solutions to barriers they may encounter at your meeting.

20. Provide resources on the conference website related to local nanny services and/or provide hotels in the block that provide offer this service. Note whether local transportation options, such as ride share services, have car seats available in the conference city on the conference website.

Why: Some parents will need to travel with their children because of family caregiving responsibilities and will need these services to safely travel with children and for full conference participation.

21. Hire (and pay) a diverse set of disabled consultants to help plan these and other accessibility-related considerations for your events.

Why: Non-disabled individuals are often unaware of the ways in which conference sites are inaccessible. Disabled consultants should be used to ensure a conference is accessible, and they should be compensated for their expertise. Consultants from different disability perspectives should be selected, to ensure a broad representation of knowledge regarding common access barriers.

22. Ensure conference websites and registration pages conform to WCAG guidelines for website accessibility.

Why: If a disabled person cannot access information about and registration to your conference, they will not be able to attend and will likely be discouraged from attending as they will excluded from the very first step.


Guide for Building More Accessible Scientific Workplaces:  Considering Accommodations Processes
Acknowledgement: The many disabled scientists and activists whose conversations have inspired this content, in addition to the additional readings cited below.

Note: This guide assumes your organization will still require some kind of formal accommodations process. Please recognize that organizations that require an individual complete a formal accommodations processes before granting access are acting as gatekeepers and thus upholding ableism. This process is less likely to be accessible to individuals with other marginalizations, and thus employers may also be engaging in double discrimination. Further, framing disability access under the accommodations umbrella encourages individual, rather than systemic, solutions; these solutions are often one-off and do not extend outside of the individual to create broader access, nor do they persist beyond the tenure of that individual's access need. Reframing disability around redesigning for broad access is more likely to create lasting change. An additional guide will address this aspect in the future. This guide assumes a USA context.

1. Make your websites and applications pages conform to WCAG guidelines for website accessibility.

Why: If a disabled person cannot access information about your workplace, they will be excluded before they ever consider working at your organization.

2. Have a very prominent means for individuals to request accommodations during recruitment, applications, and interview. 

Why: Not all HR sites may be perfectly accessible (and may not be accessible at all, if you have not adhered to number 1). Not all stages of the application process may be accessible (e.g., traveling for interviews may require special travel or hotel accommodations, traveling may need to be planned around medical treatments, etc).

3. Make the accommodations request process readily visible and offered to any applicant and during recruitment of any individual, even if you do not think they have a disability.

Why: Not all disabilities are visible; this assumes anyone could be disabled and also cues disabled applicants into the fact that you have an accessibility-minded workplace.

4. Have a process in place to grant someone interim accommodations from day 1 of their work.

Why: Formal accommodations processes take time, even at the speediest of institutions. It often requires doctor's appointments to fill out institution-specific paperwork. It takes time to make a doctor's appointment to get this paperwork filled out, and requires disabled individuals take medical provider time away from their other, potentially pressing, medical needs. It may be difficult for your disabled employee to rapidly on-board and have a fair environment for their interim evaluations if they are not able to fully access their workplace from the start of their hire, and formal accommodations processes create barriers to equal access.

5. Do not require medical documentation of a disability if it is at all possible to skip this step within institutional processes. If you must do so, offer to pay for any medical visit that an institution requires to finalize the formal accommodation process; if this is not possible, offer to delay the required timing for this visit until after your institution's employee insurance kicks in and do not delay granting an accommodation prior to this visit (see step 3)

Why: Many organizations require require a healthcare provider certification prior to authorizing a formal accommodation. It may be useful for both employees and employers to have formal documentation of an accommodation (e.g., it may be useful for employers to demonstrate compliance, and useful for disabled employees in that it demonstrates to anyone who might deny them access that such access is not only sanctioned but granted by the organization). However, access to healthcare in this country is unequal and disabled people are more likely than their non-disabled peers to face barriers to healthcare access. People with multiply marginalized identities may have an even more difficult time accessing healthcare, including a provider who is willing to engage with ADA paperwork, which is frequently uncompensated labor on the part of the provider.

6. Work with your institution's disability office to make sure their process isn’t invasive, shaming, or yet another obstacle.

Why: Paperwork should just gather the necessary information to document that an individual requires a disability-related accommodation. If your institution requires a medical visit and certification from a healthcare provider about the disability, you should at least work with them to be certain that it is not an invasive process or creating additional barriers. Some disability offices request invasive information, such as how individuals transfer from a wheelchair to a toilet, make individuals demonstrate their access need, or create other obstacles to granting accommodations. Other offices may default to a "no accommodation unless proven otherwise" model, which is both inaccessible and discriminatory. Accommodations allow disabled individuals to succeed. Creating barriers to accommodations is not only costly to the institution because you have now invested in an employee who cannot fully perform their job functions to the best of their ability but also feels exclusive and frustrating and may encourage your employee to resign. Additionally, the accommodations process can feel like a full time job at some places. It detracts from work, is humiliating and demoralizing, and makes disabled people feel undervalued and disbelieved.

7. Provide explicit training to supervisors that emphasizes that scientists who disclose a disability and/or request accommodations are not “less than”, “unmotivated”, or “damaging” to the team, and that their messaging to the employee and the team should be one of support for the accommodation(s) in place.

Why: Though a formal accommodation may be granted by the institution or HR, some PIs or supervisors may subscribe to and communicate harmful messaging around the use of accommodations to the disabled employee and/or their team. This will decrease the morale of the disabled employee and creates a hostile work environment that is likely to hinder their productivity.

8. Include disability and accessibility in your workplace diversity, equity and inclusion (DEI) trainings (consider reframing from DEI to DEIA, to include accessibility). Emphasize that invisible disabilities (e.g., chronic illness, neurodiversity) and visible disabilities (e.g., mobility aids) are equally valuable diversity in your place of work in these trainings. Include accommodations in diversity training, so that the teams of disabled people will know how to respond to their use of their accommodations. Communicate that these accommodations are not a privilege but a need, and establish no-tolerance policies for individuals and supervisors who seek to undermine accommodations or create hostile work environments around those individuals utilizing accommodations.

Why: Though a formal accommodation may be granted by the institution or HR and the supervisor may be supportive (see step 6), peers without accommodations may resent the use of accommodations if certain accommodations -- such as the ability to take interim leave for medical treatment or to work from home intermittently -- are viewed by peers as a privilege. It's important to create clear institutional messaging around the use of accommodations to create inclusive experiences for disabled employees and give them clear recourse if their teammates create a hostile work environment.

9. Offer a disability employee resource group, and provide a budget for disability outreach events organized by members of your employee resource group.

Why: Employee resource groups (ERGs) offer opportunities for solidarity and community building. They also offer avenues for disabled employees to communicate information about their community to the broader employee-base, enhancing awareness about disabilities in your institution as a whole. Providing a budget to the ERG allows the ERG more freedom to host events that will educate your institution and enhance your diversity, equity, and inclusion initiatives.

10. Above all, believe disabled people about their bodies. 

Why: We are often incredibly motivated, high-achieving people who only use accommodations in times of great need. Requesting accommodations is an extremely personal and difficult process for many, and most of us would not endure this process if we did not need to do so. Questioning disabled people about their bodies and needs can make them feel shame, excluded, guilty, and a host of other negative emotions that do not contribute to a positive work experience.

Guide for Navigating Disablist and Ableist Workplace Structures for Disabled Employees
Acknowledgement: The many disabled scientists and activists whose conversations have inspired this content, in addition to the additional readings cited below.

Note to organizations and readers: This guide assumes your organization will still require some kind of formal accommodations process in order to achieve basic access. For organizational readers encountering this guide, please do not assume that this guide represents tacit approval of accommodations procedures. Please recognize that requiring an individual to complete a formal accommodations processes before granting basic access is a gatekeeping act that upholds ableism. These gatekeeper processes are less likely to be accessible to individuals with other marginalizations, and thus employers may also be engaging in double discrimination. Further, framing disability access under the accommodations umbrella encourages individual, rather than systemic, solutions; these solutions are often one-off and do not extend outside of the individual to create broader access, nor do they persist beyond the tenure of that individual's access need. Reframing disability around redesigning for broad access is more likely to create lasting change. An additional guide will address this aspect in the future.

 At no point should organizational leaders assume that this advice should be an expectation of disabled individuals in terms of preparedness; if you expect disabled individuals to have this preparedness, your organization is most certainly ableist.

Note to disabled readers: Because requiring this documentation and the formal accommodations process is still legal--depending of course on the content and extent of this process--this guide was developed to help newly disabled individuals or individuals new to navigating requesting workplace access know their rights and understand common structural barriers to access. Many workplaces attempt to place additional barriers to accommodations and to further delay the process, and many start from ableist assumptions and biases. This guide therefore does not assume that human resources officials are allies. Your workplace may be at various stages of deconstructing ableism and reconstructing access, with the majority of workplaces still operating within ableist base structures. Depending on how bad the system is, the system they operate may still be legal under the ADA. The goal of this guide is to provide basic guidance and resources for navigating this system of oppression, while framing the unfortunate need to navigate oppression under the tenants of disability justice. This list assumes a USA context. This guide is not legal advice.

Disclaimer: This list is not legal advice and is not provided by a lawyer. For any explicit legal advice, you should consult a legal professional.

The onus for creating an accessible workplace should not fall to you. Workplaces should already be accessible. However, STEM has a rich history of ableist oppression, and the protections outlined in the ADA do not, unfortunately, prevent many ableist processes and procedures from proliferating in workplaces. Arming yourself against this oppression can start by coming prepared to your first meeting with members of your organization that hold structural power (such as your supervisor or PI). Knowing what might benefit you in an oppressive structure can help with that preparedness. At no point should organizational leaders assume that this advice should be an expectation of disabled individuals in terms of preparedness.

1. Note that the definition of disability defined in the "letter of the law" of the ADA enacted in 1990 is more narrow than the definition in the ADA Amendments Act of 2008, and in the various guidance issued by the EEOC and the US Department of Justice. Know the full extent of your rights and resources, but also be aware that for your own protection, you may wish to engage legal or union representation before asserting them.

Why: Many workplaces utilize outdated policies that place the burden of proof of disability on the individual. Recognize that you have rights that may go beyond those stated by your organization or implied to you by your HR, management, or department. The ADA has been the subject of much demonization in the media, and fear of legal liability may make employers react variously to being reminded of the law and EEOC and Department of Justice guidance. However, they offer very good places to understand your rights as a disabled person in the workplace. If you need to assert your rights in the workplace because they are being denied, do so carefully, and consider consulting an employment lawyer if you have the means to do so. Some universities offer free legal clinics to train students. These clinics are run by a lawyer but employ students who are training. Some states also have disability rights organizations that can offer free legal consults regarding employment discrimination.

Resource links: coming soon

2. Review your workplace policy if a written policy exists. 

Why: This policy may clue you into how progressive your organization is (e.g., does it align with the guidance from EEOC etc) and whether they have experience with providing accommodations at all (if there is no written policy, they are likely inexperienced). Such a policy may also describe what kinds of documentation is expected, what the process is, etc. For instance, some workplaces have specific paperwork for your healthcare provider. If you first visit your healthcare provider and receive documentation in another format, you may have to repeat this process, so being aware of the documentation request process up front could save time, money, and medical appointments.

3. Document, document, document. Always document all conversations that you have with management or organizational leaders about accessibility in writing. If these conversations occur by telecommunication or in in-person meetings, you may want send a follow-up email summarizing the meeting for all parties, "Based on my understanding, here is a summary of the meeting. The following three points were made: [list the bulleted points]. If I have gotten anything wrong about what you said in the meeting in my summary, please reply back to me with your corrections by X date so that I make sure I have total understanding."

Why: You may require this documentation later, especially if accommodations are informally granted. No matter how seemingly on your side management appears, do not assume they are operating through a lens that incentivizes access. If you do not feel comfortable sending follow-up email, be sure to at least maintain careful documentation for yourself. Even if your management or HR rep is on your side, personnel changes could affect decisions, and having documentation from these meetings could be crucial for maintaining access.

4. If you don't know what workplace changes would improve access for you, consider starting by writing down what aspects of your workplace create barriers to access to essential functions of your job for you. Is rigid scheduling preventing you from attending medical appointments? Is the location of your office limiting because of transportation or other barriers? 

Why: Writing a list can help you start to brainstorm ways the workplace could be restructured to improve access. If you had a single day of flexible scheduling per week, would that allow you to schedule your routine medical care? Would working from home a certain number of days help? Remember that essential functions of your job are what you have to be able to perform. Showing how proposed accommodations help you perform essential functions can be key framing in early meetings. It may also be helpful to document what are likely non-essential tasks that, if inaccessible, could be redistributed or reworked. 

5. Consider consulting with your doctor(s) about accommodations that have helped others in your situation. 

Why: If you have access to a medical professional, they can sometimes be a great resource. Some doctors are excellent providers who are experienced with this paperwork and are eager to help their patients return to or maintain employment, as they know employment can enhance financial stability and thus quality (and sometimes quantity) of life for their patients. Some doctors even specialize in working with patients to find workplace accommodations that can improve their quality of working life. However, the author acknowledges that the medical system is itself ableist and oppressive in other regards (e.g., it is racist and inaccessible financially to many); hence, this advice may not be helpful if your provider has not demonstrated that they are safe and helpful with disabilities for you.

6. Whether or not you have good ideas for accommodations, consider consulting the Job Accommodations Network (askjan.org) for ideas. 

Why: If you are able to find accommodations on askjan.org that suit your needs, it offers documentation to your supervisor or PI that shows that there is precedent for offering these accommodations in other workplaces, and that they have been considered reasonable in other contexts. But don't be limited by what is here - scientific jobs often have specific functions, and other options may exist.

7. Brainstorm ways you can show that accommodation(s) that will work for you are reasonable (typically based on time and finances). 

Why: Many organizations attempt to create access barriers by arguing that an accommodation is financially, temporally, or spatially unreasonable, because the ADA provisions that organizations must provide reasonable accommodations, and allow organizations exemptions from providing "unreasonable" organizations. To provide an absurd example, if you requested a private jet fly you to and from work since your transportation was not accessible, an organization might argue that it was financially unreasonable to expect them to pay for a private jet every day. However, analyses have found that most accommodations represent no cost or a low one-time cost. Further, organizations often fail to include long-term savings or the contributions of your enhanced productivity in their calculations. If you can attempt to build documentation that your accommodation is a reasonable investment prior to meeting with management, you may stand a better chance of having it granted. If the accommodation can be made without cost, emphasize that. If there is a financial cost to the accommodation, in your statements you can include things like the time the accommodation might save you, how much more productive you could be, if any other individuals might benefit (e.g., if it would save your colleagues time if you could complete a task without additional help, if it would help someone with a similar disability later, like by converting a bathroom stall to be accessible).

A good strategy is to note, "I know that [X function] is an essential function of my job. [Y accommodation] would allow me to accomplish this function (more efficiently)  by [describe how the accommodation will facilitate this task]." If the accommodation may benefit others in the workplace, be sure to highlight that too.

Example: "I know that pipetting samples is an essential function of my job. Because of my limited hand mobility, it takes me almost 3 times as long to pipette samples as an average worker. However, with a multichannel pipette, I estimate that I could pipette at an equal rate to my colleagues, or perhaps slightly faster. On my days off, or when I'm assigned other tasks, my bench neighbors would be welcome to use the pipette, and this would improve their efficiency during those periods. The pipette that would benefit me is a one time cost of about $500. I estimate that within the first 3 days of work alone I could recoup this cost based on my person-hours saved. We would continue to save costs with each use, and any additional efficiency gained by my coworkers when I am not in need of the pipette would save additional funds."

References: coming soon.

8. Organizations are required to engage in the interactive process. If at first your requested accommodations are denied, don't be afraid to ask for more time to develop alternative solutions, and to request that they also provide alternatives. This experience of initial denial is often flustering, and you may not have the bandwidth to self-advocate in the moment. You can use the phrase, "I appreciate that we didn't come to a solution today. Could we reconvene to brainstorm alternative accommodations as part of the ADA interactive process in X days?"

Why: Many organizations default to a deny first approach. It is good to have a backpocket "pause button" because these meetings can quickly escalate to meetings that blame or demonize the employee. Also, if any of your disabilities are psychiatric in nature or are related to neurodevelopmental differences (e.g., Autism/ADHD), it is especially helpful to have these scripts so  you can pause these meetings if they get overwhelming. Always make sure to follow-up with step 3 between meetings.

9. Consider whether there is someone you may trust to be an ally on your team. For instance, this could be a direct supervisor, a functional supervisor, or someone you just work with frequently. See if they will be willing to review your accommodation requests and/or advocate that they could be reasonably implemented in your work.

Why: Especially if there is a supervisor who supports you, they can help you navigate the systemically ableist processes that are HR-based formal accommodations, and may be able to help you get those accommodations prior to the HR process itself. In instances where managers have "pre-granted" accommodations, the HR process can become a formality, because it is hard for them to show that an accommodation is unreasonable if it has already been successfully implemented.

10. If the employer asks for something seemingly too invasive, prepare a statement you can use to ask for a pause so you can learn more about the request. Do not immediately provide fully access to the employer.

Why: Many employers overreach in seeking documentation. While the ADA permits employers to seek medical documentation related to an accommodation request, this is usually limited to the scope of that information. Employers may sometimes pressure individuals to sign a "Release of Information" allowing them to access a broader set of records, but this is typically not allowed as greater detailed medical records would undoubtedly hold private information unrelated to the disability for which you are seeking accommodation. Other examples where an employer may be unnecessarily invasive may include forcing you to demonstrate something private about your body, forcing you to allow a manager access to your health portal, or forcing you to log into your medical portal on company equipment or print medical records on company equipment. If something sounds too invasive, it probably is. But, you may be flustered in the moment. Having a script like, "I'm feeling a little flustered by the private nature of this request. I'd like to take a pause until X date to collect myself and learn more about this request" can help you navigate these situations. Then you can decide if you have time to do some research and seek legal counsel if you feel it is needed.

11. Disclosure in the workplace can be dangerous and scary, but not all individuals have the luxury of hiding their disabilities. If you know someone who has successfully gone through the accommodations process at your workplace before you, it may be worth asking if they are willing to discuss their experience.

Why: No two experiences are the same, but understanding barriers and pitfalls faced by others can help you know what to expect.


More resources coming soon!


Guide for Designing Accessible Scientific Studies
Acknowledgement: The many disabled scientists and activists whose conversations have inspired this content

Disabled individuals represent up to 20% of the United States population. Disabled individuals are also more likely to be health system utilizers, and for translational studies in particular, it is critical to make them accessible such that your participant population is representative of the patient population in which you wish to test your intervention.

1.  If you will exclude people with specific disabilities from your study, you need a clear ethical or scientific justification of why you will do so. 

Why: As noted by DeCormier Plosky et al., "In the absence of a compelling ethical (such as additional burden or disadvantage for people with disabilities) or scientific (such as increased medical risk) reason, the routine exclusion of people with disabilities is legally problematic and potentially discriminatory under the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act of 1973, and Section 1557 of the Affordable Care Act (ACA)."

2.  Avoid broad exclusion criteria which could potentially be interpreted in discriminatory ways or unintentionally exclude some disabled populations.

Why: As noted by DeCormier Plosky et al., if exclusions are not worded with specifically and instead use broad language, you may create exclusion criteria that are "discriminatory, may go beyond the intentions of the study authors, and threaten the external validity of clinical research."

3. Make your websites and applications (apps) conform to WCAG guidelines for website accessibility.

Why: If a disabled person cannot access information about your workplace, they will be excluded.

4. Have a very prominent means for individuals to request accommodations during recruitment.

Why: Barriers to joining the study may bias your study against inclusion of disabled individuals, limiting the external validity of your study in real-world populations

5. Make the accommodations request process readily visible and offered to any interested participant, even if you do not think they have a disability.

Why: Not all disabilities are visible; this assumes anyone could be disabled and also cues disabled participants into the fact that you have an accessibility-minded study.

6. Review possible accommodation needs and research accommodation solutions at your institution, including any cost associated with such accommodations.

Why: Your institution likely offers services to disabled patients, such that if you are recruiting participants with disabilities you can provide these services. These services may include TTY services, ASL interpreters, clinic guides for Blind patients, etc. Contracting within your institution to provide these accommodations is often cheaper than finding an outside individual on a one-off basis when needed for a participant. Seek consultation with your accommodations offices for patients prior to recruiting participants, so that you have a clear process for contracting their services if required.

7. Provide explicit training to study staff about how to talk about and talk to people with disabilities, so that ableist assumptions are not displayed to your disabled participants.

Why: It is important to create an inclusive environment for your participants from all experiences. For disabled participants, accommodations especially should not be framed as a burden to the study, and if accommodations result in extra time on the part of the disabled individual, the study should be apologetic and never defensive.

More recommendations coming soon.

Suggested External Readings and Resources

DeCormier Plosky W, Ne'eman A, Silverman BC, Strauss DH, Francis LP, Stein MA, Bierer BE. Excluding People With Disabilities From Clinical Research: Eligibility Criteria Lack Clarity And Justification. Health Aff (Millwood). 2022 Oct;41(10):1423-1432. doi: 10.1377/hlthaff.2022.00520. PMID: 36190895.

Inclusive Astronomy 2's Recommendations for Planning Inclusive Astronomy Conferences

SIGACCESS's Accessible Conference Guide

NJACE Autism Language Guide

Kristen Bottema-Beutel, Steven K. Kapp, Jessica Nina Lester, Noah J. Sasson, and Brittany N. Hand. Avoiding Ableist Language: Suggestions for Autism Researchers. Autism in Adulthood.Mar 2021.18-29. http://doi.org/10.1089/aut.2020.0014 

Dwyer P, Ryan JG, Williams ZJ, Gassner DL. First Do No Harm: Suggestions Regarding Respectful Autism Language. Pediatrics. 2022 Apr 1;149(Suppl 4):e2020049437N. doi: 10.1542/peds.2020-049437N. PMID: 35363298; PMCID: PMC9066426.

Mia Mingus. Forced Intimacy: An Ableist Norm


Mia Mingus. Access Intimacy: The Missing Link.


Mia Mingus. Access Intimacy, Interdependence, and Disability Justice


Shifting the Weight of Inaccessibility: Access Intimacy as a Critical Phenomenological Ethos by Desiree Valentine. Journal of Critical Phenomenology. 3 (2): 76-94


Elizabeth Levitis et al. Centering inclusivity in the design of online conferences—An OHBM–Open Science perspective.  GigaScience. 10(8): 1-14. 


Aimi Hamraie. Building Access: Universal Design and the Politics of Disability. (Minneapolis: University of Minnesota Press, 2017)


Contra*. Podcast hosted by Aimi Hamraie


Disability Visibility: First-Person Stories from the 21st Century. Edited by Alice Wong. (Vintage Books, 2020)


Disability Visibility Project. Edited by Alice Wong.


High Risk Pandemic Stories: A syllabus. Curated by Alice Wong.


10 Principles  of  Disability Justice


Alt Text as Poetry


Sonya Huber.  Pain Woman Takes Your Keys and Other Essays of  A Nervous System. (University of Nebraska Press, 2017)


Leah Lakshmi Piepzna-Samarasinha. Care Work: Dreaming Disability Justice. (Arsenal Pulp Press, 2018)


Rebecca Burgess. Understanding the Spectrum: A Comic-Strip Explanation

 

More Links Coming Soon