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 possibe 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

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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 Accessible Scientific Workplaces
Acknowledgement: The many disabled scientists and activists whose conversations have inspired this content

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. Offer to pay for the medical visit required 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: Getting a formal accommodation typically requires a healthcare provider certification. 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.

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 and certification from a healthcare provider about what accommodation is needed and that the healthcare provider views it as necessary. 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 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 in your workplace equity, inclusion, and diversity trainings. 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 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.

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.