Lessons I Have Learned About Disability and Allyship
These are lessons I have learned through my experiences as a person with "invisible" disabilities, a case manager for children with disabilities, a family member, and a physician.
This guide was also created with support and guidance from the Disability in Medicine Mutual Mentorship Program (DM3P).
What Does It Mean to Be an Ally?
Being an ally means listening to and respecting the lived experiences of people with disabilities.
It means recognizing that accessibility is not something people should have to repeatedly fight for or justify.
It also means understanding that being supportive does NOT mean speaking for someone, assuming what they need, or expecting them to educate you about disability.
A major part of allyship is simply asking:
"How can I support you?"
And then listening to the answer.
What Is Considered a Disability?
Per the Americans with Disabilities Act (ADA):
A person with a disability is someone who:
- Has a physical or mental impairment that substantially limits one or more major life activities
- Has a history or record of such an impairment, such as cancer that is in remission
- Is perceived by others as having such an impairment, such as a person who has scars from a severe burn
Disabilities can be visible or invisible.
Someone does not need to "look disabled" to have a disability.
Identity-First vs. Person-First Disability Language
People describe their relationship with disability in different ways.
There is no single form of disability language that every person prefers.
Identity-First Language
Identity-first language reflects that someone views disability as an important or core component of their identity.
For example:
"I am a disabled person."
Someone may feel that their disability is an important part of who they are and how they experience the world.
Person-First Language
Person-first language places the person before the disability.
For example:
"I am a person with a disability."
Someone may prefer this language because they view their disability as something they experience rather than something that defines their identity.
Q: Which Language Should You Use?
Use the language the PERSON prefers.
People may choose identity-first language or person-first language to describe their disability identity.
Please respect their right to choose how they identify.
And most importantly:
DO NOT correct someone's preferred self-identifier.
If you don't know what language someone prefers, you can simply ask.
Claiming or Rejecting a Disability Identity
The Americans with Disabilities Act does not provide a simple list of medical conditions that are automatically considered disabilities in every circumstance.
Disability can also be both a legal category and a personal identity.
As described in disability literature:
"People with conditions that qualify as disability under the Americans with Disabilities Act (ADA) may nonetheless choose to reject the disability identity. Conversely, people may claim disability identity even if their condition does not meet ADA criteria for disability status." (1)
Someone may have a qualifying disability and not personally identify as disabled.
Someone else may strongly identify with the disability community.
Their identity is theirs to define.
How to Make Presentations More Accessible
Accessibility should be considered BEFORE someone has to ask for it.
Small changes can make presentations significantly more accessible to people with disabilities.
Introduce Yourself With a Brief Visual Description
When introducing yourself, consider providing a short visual description.
For example:
"I am a brown-skinned woman with brown hair down to my shoulders. I'm wearing glasses and a blue turtleneck."
Why?
This can improve accessibility for people who are blind or have low vision.
Your description does not need to be long.
Simply provide enough information to help someone understand what others in the room can visually observe.
Speak Clearly and at a Comfortable Pace
Speak:
- Clearly
- At an appropriate volume
- At a moderate pace
- Without unnecessarily rushing
This can improve accessibility for:
- People who are Deaf or hard of hearing
- People using captioning
- People with auditory processing differences
- Non-native English speakers
- People using interpreters
Clear communication benefits EVERYONE.
Always Use Closed Captions When Available
Make sure closed captions are turned on for presentations, videos, and virtual meetings whenever possible.
If the platform allows translated captions, consider making those available as well.
Captions can help people who are:
- Deaf
- Hard of hearing
- Neurodivergent
- Non-native English speakers
- Experiencing difficulty processing spoken information
Accessibility tools frequently benefit far more people than the group they were originally designed to support.
Describe Images on Your Slides
If your presentation includes an image, briefly describe what is shown and WHY you included it.
This promotes accessibility for people who have low or no vision.
It can also provide additional context for everyone else in the audience.
Your description does NOT need to be long or complicated.
Simply describe the main point you intended the image to communicate.
When possible, also add alt text to images in your presentation so that screen-reading technology can interpret them.
How to Get Someone's Attention Respectfully
Introduce yourself and your position.
Do not suddenly rush up to someone or touch them unexpectedly.
When greeting someone, you can ask:
"Would you like a hug, handshake, or fist bump?"
This allows the individual to choose what type of physical interaction—if any—they are comfortable with.
Never assume that everyone wants physical contact.
How to Have a Respectful Conversation With Someone With a Disability
There are a few simple practices that can make conversations more respectful and accessible.
Sit at Eye Level
When possible, sit at approximately the same eye level as the person you're speaking with rather than standing over them.
Position yourself in front of them, but consider sitting slightly at an angle instead of directly looming over them.
The goal is to create a comfortable conversation rather than making someone feel physically intimidated.
Speak Directly to the Person
If someone has an interpreter, caregiver, assistant, or support person with them:
TALK TO THE PERSON.
Do not direct your questions exclusively toward their:
Interpreter
Parent
Caregiver
Personal care assistant
Partner
Family member
The individual you are caring for should remain at the center of the conversation.
An interpreter is there to facilitate communication—not replace the person.
Do Not Speak Over or For Someone
Give people time to communicate.
Do not automatically finish someone's sentences.
Do not answer questions on their behalf.
Do not assume they cannot understand you because they communicate differently.
Allow people the time and space they need to respond.
Adjust Communication Without Infantilizing Someone
Adjust your explanations based on someone's communication and educational needs.
But DO NOT talk to an adult like they are a child.
Avoid:
"Cutesy" language
Baby talk
Unnecessarily high-pitched voices
Overly simplified language unless requested or appropriate
Talking about someone as though they are not in the room
Disability does not automatically mean intellectual disability.
And intellectual disability does not mean someone should be treated without dignity or respect.
Recognize the humanity in EVERYONE.
Words to Avoid
There are words historically used toward disabled people that are widely considered derogatory or disrespectful.
Avoid terms such as:
Retard / Retarded
Midget
Cripple / Crippled
Spaz
Also be thoughtful about phrases such as "special needs." Many disability advocates prefer the more direct language of "disabled," "person with a disability," or a specific description of someone's accessibility needs.
Most importantly, follow the language the individual or community uses for themselves.
How to Offer Help to Someone With a Disability
Do NOT automatically assume someone needs help.
ASK.
For example, if someone is blind, you might say:
"Would you like me to walk with you?"
If they say yes, ask which side they would prefer you to walk on or how they would like assistance.
Do not simply grab their arm and start guiding them.
Ask About Accessibility Before Meetings and Events
Whenever possible, ask attendees about accessibility needs BEFORE the event.
You can say:
"Please let me know if there are any accessibility needs that would help support your participation."
Possible accessibility considerations may include:
Closed captioning
Interpreters
Wheelchair accessibility
Accessible seating
Breaks
Lighting adjustments
Quiet spaces
Dietary considerations
Accessible presentation materials
Remote participation
Additional time
The goal is to normalize accessibility rather than making people feel burdensome for requesting it.
Never Touch Someone's Mobility or Accessibility Device Without Permission
Wheelchairs, canes, walkers, communication devices, service-related equipment, and other accessibility tools can function as extensions of someone's body and independence.
DO NOT:
Lean on someone's wheelchair
Move their walker
Grab their cane
Push their wheelchair without permission
Move an accessibility device out of the way
Always ask before touching or moving someone's equipment.
Listen to Disabled People
"If you do not identify as disabled, please defer to the lived experiences of those with disability." (1)
Listen to perspectives from members of the disability community without immediately questioning or negating their experiences.
Someone telling you that something is inaccessible is providing you with important information.
Listen.
Don't Center Yourself in Someone Else's Disability Experience
If you do not identify as disabled, avoid making conversations about disability primarily about YOUR experience interacting with disabled people unless someone specifically asks for that perspective.
Instead of saying:
"I know exactly what you're going through because..."
Consider listening first.
The person experiencing the disability should remain at the center of the conversation.
Disabled People Do Not Owe You an Education
People with disabilities should not be expected to repeatedly explain:
Their diagnosis
Their medical history
Why they need an accommodation
What their disability feels like
How disability discrimination works
Why something is inaccessible
Their trauma
Their personal experiences
If someone chooses not to discuss their disability with you, respect that decision.
You can educate yourself through books, articles, disability advocates, professional organizations, and other resources rather than placing the entire responsibility for your education on one disabled person.
Respond to Accessibility Feedback With Grace
If someone tells you that something you did, said, or organized was inaccessible:
Listen.
Avoid immediately becoming defensive.
Thank them for telling you.
Ask what could be changed.
And then make an effort to change it.
Accessibility is a learning process.
You will probably make mistakes.
Being an ally does not mean never making a mistake.
It means being willing to listen and change when someone points one out.
One Disability Does Not Make Someone an Expert on Every Disability
"Having one type of disability does not grant a person omniscience about the lived realities of people with all types of disability." (1)
Disability is incredibly diverse.
Experiences differ across:
Physical disabilities
Sensory disabilities
Psychiatric disabilities
Learning disabilities
Intellectual disabilities
Developmental disabilities
Chronic illnesses
Neurodivergence
Mobility disabilities
Visible disabilities
Invisible disabilities
Even two people with the SAME diagnosis may have completely different experiences and accessibility needs.
There is no single "disabled experience."
Invisible Disabilities Are Still Disabilities
One of the most important things I have learned through my own experiences is that disability is not always visible.
You cannot determine whether someone has a disability simply by looking at them.
You may not know that someone is living with:
Chronic pain
A psychiatric condition
A neurological condition
A learning disability
A chronic medical illness
Neurodivergence
A sensory disability
Or another condition affecting their daily life
Do not require someone to "prove" their disability to you simply because you cannot see it.
Disability Does Not Automatically Need to Be "Fixed"
Disabilities aren't automatically something that need to be healed or cured. (2)
For some people, treatment or symptom improvement may be incredibly important.
For others, disability is an important part of their identity and community.
Many people want ACCESS rather than pity.
They may want:
Accommodations
Assistive technology
Accessible buildings
Flexible policies
Equal educational opportunities
Equal employment opportunities
Appropriate healthcare
And respect
Rather than someone assuming their life would automatically be better if their disability disappeared.
Being Disabled Does Not Warrant Pity
Being disabled does NOT mean someone automatically wants or needs pity. (2)
Disabled people have:
Careers
Relationships
Families
Sex lives
Hobbies
Goals
Ambitions
Leadership roles
Academic accomplishments
Professional identities
And fulfilling lives
Disability is one aspect of the enormous range of human experiences.
Recognize the Humanity in Everyone
Ultimately, disability allyship does not require memorizing an enormous list of rules.
It requires recognizing another person's humanity.
Ask rather than assume.
Listen rather than speak over someone.
Respect autonomy.
Believe people's descriptions of their own experiences.
Make accessibility part of your planning rather than an afterthought.
And recognize that people with disabilities deserve the same dignity, opportunities, autonomy, and respect as everyone else.
What I Have Learned
My understanding of disability has developed through many different parts of my life.
I have experienced disability personally.
I worked as a case manager supporting children with disabilities and their families.
I have family members with disabilities.
I have learned from disability advocates, mentors, patients, and physicians.
And I continue learning.
One of the most important lessons has been that being an ally is not a title you earn once.
It is an ongoing practice of:
Listening
Learning
Reflecting
Advocating
Changing
And making spaces more accessible for the people around you.
Dr. Moss' Disability Resources
My Podcast: "Life as a Patient-Doctor"
Learn More About Caring for Individuals With Disabilities
Learn More About Support Groups, Books, and Resources for Living With a Disability
EQUAL ACCESS FOR STUDENTS WITH DISABILITIES: The Guide for Health Science and Professional Education
Disability as Diversity: A Guidebook for Inclusion in Medicine, Nursing, and the Health Professions
Disability in Medicine Mutual Mentorship Program (DM3P)
References
1. Rastogi S, MD. Speaker Expectations for the Disability in Medicine Mutual Mentorship Program (DM3P).
docs.google.com/document/d/100AdOeSYh9tsxIw3syGeC4K739E2a8MOIO00IxYSNnE/edit#heading=h.6rxfhsnp0qn8
2. Ladau E. Demystifying Disability: What to Know, What to Say, and How to Be an Ally. Ten Speed Press, an Imprint of Random House, a Division of Penguin Random House LLC; 2021.
More From Dr. Moss
I blog about living as both a patient and a medical doctor.
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