Authentic Accessibility

Disability Leadership & Inclusion

Authentic Accessibility: Disability Leadership & Inclusion

• The What & Why of Disability Leadership
• How to Get Started with Disability Leadership
• Inclusive Outreach

The What & Why of Disability Leadership

“Nothing About Us Without Us”

A fundamental rallying cry of disability studies and disability advocacy (in the United States especially) is:

“Nothing about us without us.”

For a long time in the United States, things were done to people with disabilities instead of with them.

People with disabilities did not have agency in deciding the laws and regulations that governed their own lives. Other people were appointed as their guardians. Other people were appointed as people who knew better about disability than people with disabilities.

In the video above is Max Barrows, who works at Green Mountain Self-Advocates, which is a disability advocacy organization in Vermont. And Green Mountain Self-Advocates recorded a series of videos featuring Max and other people with disabilities explaining more about the historical context and necessity of “nothing about us without us”.

When you are considering building an accessible improvements project, you want to understand that it has to include people with disabilities as agency makers, as change makers.

People With Disabilities Need Positions of Agency

This can look like people with disabilities being designers of your study or designers of the changes, designers of your outreach material. People with disabilities can be reporters. We can be storytellers. We’re really good at telling our own stories. We’re experts in the field of disability. We can be data collectors. We can help you collect data about what is inaccessible in your project and needs to be changed.

People With Disabilities Need Positions of Leadership

People with disabilities also need to be in positions of leadership with your project. That can look like being a member of your board. That can look like being the president of your board or the chair of your committee. It can look like being a principal investigator on a study or a study author, because when you talk about accessibility, you’re talking about changing conditions related to disability. People with disability need to be the ones who are leading the conversation and leading the change, directing the change. And most importantly, people with disabilities need to be paid for our work.

People With Disabilities Need to Be Paid

For a long time in the United States, there was something known as sub-minimum wage.

It is still allowable in several states today to pay people with disabilities less than the minimum wage simply because they have disabilities. If you are thinking to yourself, “Hey, that sounds like discrimination!”, it is. And we’re working hard to change that nationwide.

Vermont no longer allows subminimum wage. And at CDCI, I’m going to share what we pay people with disabilities for their time when they are working with CDCI, as an organization.

CDCI publishes a monthly podcast. And we estimate that if you’re going to be a guest on the podcast, you’re committing to an hour and a half of your time. So we give you a $75 stipend. The stipend is available to people with disabilities or immediate family members of people with disabilities.

The same thing with our UX research study. (UX stands for User Experience.) We’re currently conducting a study to learn more about how people with disabilities interact with websites, specifically our own website, which we’ve started to redesign.We want people with disabilities and family members of people with disabilities to tell us how it’s working and how it could work better. This research study asks for an hour of people’s time, and for that they receive $40.

We also have a Community Advisory Council. It’s analogous to or similar to a board of directors. We estimate that when you meet with us, each meeting is three hours long and we give a $60 stipend for the full amount of the time.

The amount of money that we offer for the podcast episode in particular, we were able to raise from last year because the cost of living in this country is going up. So it’s important to have those conversations, and to pay people for their work and think about how to pay people competitively for their work. The UX research study — the $40 — it’s a brand new study. It only opened up this past week in April 2025, so we feel like that is a competitive stipend for participating in the study.

People with Disabilities Need To Be Paid For Our Stories

We especially need to be paid for our stories, as people with disabilities. CDCI publishes a monthly podcast called Green Mountain Disability Stories. These are a series of conversations between, with, and about people with disabilities and family members of people with disabilities. They share stories of how Vermont’s systems support and thwart them.

There has been recently, especially with the rise of quote unquote “social media influencing”, this idea that you can pay people with exposure. Don’t do this not to people with disabilities. Don’t do this to people without disabilities, but especially not to people with disabilities.

If you are collecting people’s stories to share, you have a moral obligation to compensate them in some way. If you are building social capital through social media — through podcasting, through video making — using other people’s labor, other people’s content (which is what their stories are) compensate people fairly for those.

Do not offer or accept being paid in exposure.

How to Get Started with Disability Leadership

In all of your interactions, please realize that disability disclosure requires consent.

All things should require consent to be a healthy activity, but specifically: no one should be forced to disclose their disability to you in order to take part in your project.

No one should feel questioned about their disability status. Do not ask people to provide you with proof of disability in some way. It’s really all about instead creating an environment where people feel supported in telling you about themselves and what they need.

A lot of times we talk about “disability accommodation” and the word accommodation is useful on the one hand because it’s a shorthand for a set of conditions that make it possible or more welcoming for people with disabilities to fully participate. But it’s also a problematic word on the other hand, because people shouldn’t need situations to be changed specifically to enable their participation.

We should be creating situations that are fully inclusive, that are fully welcoming to people with all kinds of disabilities. Think about instead the words accessibility and inclusion.

Accessibility is actually a legal term which refers to a set of conditions that — in the United States — has been laid out by the Americans with Disabilities Act (ADA) and is enforced in this country through lawsuit. It”s enforced in other countries by actual laws. Laws that talk about the baseline for creating the most flexible conditions for the most number of people with the largest number of different disabilities to participate.

Inclusion is much more broad. It refers to the set of conditions where people feel welcome to participate, where people feel that they can choose to participate. And the barriers are often much lower to participating when we think about creating inclusive situations for people with disabilities.

Asking about disability

How do you ask about disability?

CDCI has come up with two different ways to think about asking about someone’s disability because, yes, you can say “we welcome people with disabilities”. “We are fully inclusive of people with disabilities.” But you also may want to collect data around how many people with disabilities or whether you have people with disabilities participating.

Back in 2022, CDCI partnered with the Nature Conservancy Vermont on surveying people’s accessibility needs in Vermont’s natural outdoor spaces.

And we did this by giving a survey, asking people to rank different accessibility features and how important they felt they were in Vermont’s natural outdoor spaces. It was a tiny proto-study; a sort of a jumping off point. A place to get started in thinking about accessibility in Vermont’s natural outdoor spaces. In the survey we asked simply:

“Do you consider yourself disabled?”

And the three options were:

• yes
• temporarily yes, and
• no.

Types of disabilities: permanent, temporary, and situational

A note about disabilities and different types of disabilities: you can be in one of three different general disability categories. Those categories are: permanent disabilities, temporary disabilities, and situational disabilities.

Permanent disabilities are something like being blind due to loss of vision or simply being born with conditions that treat your vision differently. That’s a permanent disability. Limb loss is another type of permanent disability.

You can also have a temporary disability. Anyone who’s been to the optometrist, where they dilate your eyes to look inside them, once you get outside back into daylight, it’s really hard to see until the medication they’ve given you to dilate your eyes wears off. You have much less ability to see things until that medication wears off. You are temporarily disabled.

Another example of temporary disability would be if you have a broken arm, for instance. We assume that the bones are going to heal. You might have a temporary disability related to your mental status based on a medication mishap or a vitamin deficiency. That is a temporary disability. It can be changed in some way back.

And then situational disabilities are those that result simply from outside forces and don’t have anything to do with bodily difference. An example of a situational disability would be when you are trying to read a screen in full sunlight or you’re trying to listen to a video on a crowded bus and you don’t have your headphones with you. Of course, you’re not going to play the audio out to the rest of the bus, but you might want to watch the video regardless. That’s a situational disability.

When we are recruiting people for accessibility projects, we are looking for people who are permanently disabled or even have temporary disabilities. Consider both.

And again, you’re going to want to figure out how to do this in a consent positive manner. Does this need to be a required question on any type of survey?

The Washington Group Questions

The other way that we’ve approached this is through what’s known as the Washington Group Questions. At CDCI, Dr. Adrienne Miao noticed that as we were enrolling people in trainings and webinars, we originally asked people to tell us about their quote-unquote “relationship to disability”.

We asked people:

What is your relationship to disability?

• Are you a person with a disability?
• Are you an adult with a disability?
• Are you a child with a disability?
• Are you the family member of a person with a disability?
• Are you a personal support assistant?
• Are you an ally?

But Dr. Miao noticed that 12% of our attendees chose not to answer, so she wanted to know how we could be more inclusive. So she did some research on what are known as the Washington Group Questions.

And the Washington Group Questions, there’s six of them.

They are:

1. Do you have difficulty seeing?
2. Do you have difficulty hearing?
3. Do you have difficulty walking or climbing steps?
4. Do you have difficulty remembering or concentrating?
5. Do you have difficulty with self-care, such as washing all over or dressing? And
6. Using your usual language, do you have difficulty communicating or being understood?

These questions ask people to talk about their relationship with the natural world and with the built world, with the natural environment and with the built environment, and they don’t specifically talk about the legal definition of disability, but Dr. Miao believes that they create a better set of inclusive conditions. They create a more inclusive environment for people to feel comfortable disclosing their disability.

Building in accessibility from the start

As you get started with creating inclusive conditions to begin your accessibility project, you’re going to want to build in accessibility from the start. This includes at minimum three different things: accessible meetings, an accessible website, and plain language.

Accessible Meetings

An accessible meeting has hybrid options so people can have the option of attending in person and people can have the option of attending virtually with some of the amazing video conferencing software that’s now available. CDCI recommends Zoom as being the most accessible type of video conferencing software right now.

But also think about making your meetings held in accessible real world spaces.

If someone is coming in a wheelchair and with a service animal and or a caretaker, how would they get into your facility? How would they take part?

Are you going to require masks at your meetings? As a number of people with disabilities have immunocompromised situations and the COVID pandemic is still ongoing, and are you going to require masks? Just recommend them? Are you not going to talk about masks and say, okay, we’re not requiring masks at this in-person meeting and that’s why we have a virtual attendance option?

Accessible Website

You also want to think about making your website accessible from the start, so that means that your website meets or exceeds what are known as the WCAG guidelines.

The WCAG guidelines are the World Consortium on Accessibility Guidelines. And CDCI asks you to shoot for 2.2 AA level accessibility. WCAG guidelines have three levels to them:

• “A” is the bare minimum of accessibility that is acceptable in any way. Take videos, for example, you have the ability to turn captions on and off. Captions are available as automated captions.
• “AA” means that this is what we are accepting as a good standard for accessibility. In our captions example, that would mean edited captions are available and you can turn them on and off, and they’re implemented in such a way that they are accessible to screen readers. They’re not burned into the video because that’s not acceptable to screen readers.
• There’s also a AAA level, which means gold standard best practices in accessibility, which in our example would be that the captions can be turned on and off. They’ve been edited for clarity. They’re acceptable to screen readers. And there’s also an edited transcript available.

Now, the AA guidelines are legally mandatory for civic organizations, such as your town or state, and nonprofit and university organizations. Basically, anyone who receives federal monies is must meet or exceed AA guidelines. This includes making sure that your PDFs are accessible. So if you’re going to send out information in PDF format, get used to making those PDFs accessible. Learn how to do that.

CDCI recommends that you, as much as possible, make your information available on webpages rather than PDFs just simply because a lot of people with disabilities have a favorite browser. And we have that web browser set to be customized for our own particular disabilities, which can mean screen magnification, different color settings on the browser, dark or light themed, making the pointer larger.

All of those are really possible with a web browser, and they’re less possible with PDFs. So we recommend that as much as possible, you put your information into accessible webpages. PDFs will do in a pinch. Microsoft Word documents and Microsoft Office documents cause an equity issue because Microsoft Office is a paid product and not everyone has access to it.

Plain Language

The third recommendation we have for building in accessibility from the start, is plain language. Plain language is the most requested improvement that we, CDCI, have gotten from our Community Advisory Council. They wish more things everywhere were in plain language.

And the five aspects of plain language are:

• active voice
• shorter sentences
• a 6th grade reading level
• fewer acronyms, and
• words of three syllables or less.

It is so much more cost-effective to start building accessibly than to go back and try to retrofit accessibility in once a project has been completed.

As you get started inviting people with disabilities to take part in your project, ask people to tell you what they need.

We talked a little bit earlier about accommodations, but people recognize the word “accommodations”. They know that it means, “Hey, we’ll make these changes so that you are able to participate.”

And it also means if you’re including this question at the beginning of your registration, at the beginning of your invitation to participate, it means we’re going to set things up so that you have this from the start.

Here are some types of inclusion you can offer during registration for any kind of event:

“What would make it easiest for you to participate?”

• Inclusive listening device
• Captioning
• Reserved front row seat
• Large print materials (always has a lot of variables to it; ask people what they personally mean by “large print”)
• Advance copies of the materials
• Wheelchair access
• Scent-free room
• Gender-neutral bathroom
• Lactation room
• Diet restrictions

Some types of inclusive aspects you can provide are: asking people if they need an assistive listening device, asking people if they need captioning, reserving a front row seat in case someone needs to lip-read or needs to be closer to projected materials for their vision, making large print materials available. And large print has a lot of different variables to it, so it is always best to ask people specifically what will make them the most comfortable, because one person’s large print might be another person’s overwhelming print. One person’s large print might not meet the size guidelines that you often see for documents. (Fun fact, the WCAG does not have sizes built in as a guideline because it is so personal to all different kinds of situations people with vision can bring to any given environment.)

It can be giving people an advance copy of the materials you’re going to hand out, or the slides you’re going to project because a lot of people need extra time to either prep themselves to participate or they need extra time by themselves in a space where they can focus to understand the materials and to really get themselves to a place where they’re comfortable participating.

Of course, it means wheelchair access, but it also means wheelchair access to whatever you’re going to use as a working table in the room. That means that you may have fewer tables in the room because a wheelchair is a certain width and you need a certain turning radius as defined by ADA in order for people with wheelchairs to move comfortably through your room.

It means that you might need to think about bringing in adjustable tables, but especially tables that are lower down. If you think about putting the materials for a meeting on a table, how high is that table? Can someone in a wheelchair reach the materials and help themselves to the materials or to the food comfortably?

It can be a scent-free room. We had someone on the podcast very recently talking about having long COVID and how that has really affected how ill they get from being in the presence of different types of scent. This can be a number of medical conditions related to chemical allergies.

It could be access to a lactation room. Your disability inclusion must be intersectional, and that means accepting people’s genders, people’s family status. And one way to be more inclusive is to say, hey, we can provide you with a lactation room. Hey, we can provide you with a gender-neutral bathroom. Another way is diet restrictions. This is where people can tell you if they don’t eat certain things. They can also say whether they have potentially life-threatening airborne allergies. And then you can also just simply ask people to tell you what else will make them feel comfortable.

Measuring Success with Disability Leadership

Now, how will you know if your efforts have been successful?

At CDCI, we describe accessibility as a journey, because we always want to be doing more. We want to be more inclusive and be doing better, be learning from more people with disabilities: how to include more people and fit more people in, and make more people welcome in our projects.

What does success mean for you and your project?

• Does it mean simply that you’re collecting data to know that some people with disabilities took part in your project?
• Does it mean that you want to know some people with disabilities were agency makers in your project, were leaders in your project?
• Does it mean that you increased the percentage of people with disabilities who took part in your project?
• Does it look more qualitative, meaning that this is more descriptive?
• Does it mean you gave a survey to people with disabilities who were the agency makers and the leaders in your project and they told you, “hey, this second round of the project felt a lot more inclusive. It felt a lot more welcoming. I was a lot happier. I could access more. I brought my friends with disabilities. I brought my family members with disabilities.”

Because accessibility is a process, we just keep iterating. And every place that you are right now is valid in terms of this journey of accessibility:

You’re just starting out.

You’ve never thought about this before.

You want to get started.

You are maybe farther along and you want to know how to improve your efforts with people with disabilities.

That’s fantastic. You’re iterating this process. We love this. So you and your organization really need to make this determination to know how you want to define this for your organization.

How many people with disabilities live in Vermont?

We know in Vermont, 24% of Vermont adults have at least one disability. That’s roughly one out of every four Vermonters. 11% report having multiple disabilities. This is according to the Vermont Department of Health as reported in 2021, which we know was early in the COVID pandemic. And with long COVID, this mass disabling event, we can assume that those numbers are going to or have increased. You can use these numbers to think about how you want to measure success with disability inclusion in your project.

Inclusive Outreach

Let’s talk a little bit about how to make your outreach more inclusive.

54% of people in the United States read below a sixth grade reading level.

That is more than half of people in the United States. This is why we are so passionate about plain language.

Plain language makes reading easier for people who have cognitive and developmental disabilities or who have difficulty reading for one reason or another.

Maybe it’s a concentration issue. Maybe it’s dyslexia. Or it’s a vision issue where you’re a little bit slower at reading text or maybe you’re using a screen reader and you have to listen to the screen reader tell you everything that’s on a page.

It also makes things easier for people who are English language learners. Let’s talk about language access as an aspect of inclusion! Many people do not use English as their preferred language. And as we try to be more inclusive, that means making materials available in languages other than English.

Also: translators. If you’re going to make materials available in other languages and you hire out for translation, then one of the first things your translators are going to do is to take any piece that you give them and make it plain language…and then translate that plain language. If you are providing plain language materials to your translators right from the start, you will save money on your projects. We’ve had several translation firms let us know that this is the case.

Plain language also makes reading easier for people who are super busy.

Show of hands, anyone here who has been making dinner with one hand, helping someone in their household with homework with the other hand, with a third mystery hand that appears out of nowhere, they’re also trying to read an article their cousin sent them (“It’s amazing! You’ve got to read this!) And they know they’re meeting up with their cousin tomorrow. And so this is the time they have to read that article as well. People who are super busy tend to skim. They tend to read faster because they’re just trying to get through it because they’re so busy. Everything pulls their attention in different directions. If you’re using plain language, your communications are going to be more effective at reaching a greater number of people.

Accessible Tools, 2025 version

Inclusive outreach means using accessible tools to reach out to people. As of April, 2025, these are what CDCI recommends as accessible tools.

Surveys & Event Registration

If you are giving out surveys, Qualtrics is the most accessible we’ve found. Microsoft Forms can also be accessible. You don’t need a Microsoft license, a paid license to access a Microsoft Form. You can make Google Forms accessible. Just look at them and think about ways to make them more accessible. As of April, 2025, something like Eventbrite is much less accessible. So do a little bit of research on your tools.

Video Meetings

CDCI recommends Zoom (as of April, 2025), as having the most number of accessibility features that people can control. Even the free version of Zoom. A note here about using Doodle Polls for scheduling: Doodle Polls currently have an accessibility issue for screen readers.

Plain Language

How do we know if we’re using plain language? How do we know if we are hitting that sixth grade reading level? Well, there’s a tool called Readable.com that is free for you to copy and paste in snippets of language, and it will tell you how close you’re getting to sixth grade level. It will tell you what specifically you can do to get to a sixth grade level. We love some free tools.

Vermont Disability Advocacy Organizations

As you are reaching out to people with disabilities in Vermont, here are a number of disability advocacy groups that love to make connections:

• Green Mountain Self-Advocates
• UVM Center on Disability & Community Inclusion (CDCI)
• Disability Rights Vermont
• Vermont Center for Independent Living (VCIL)
• Vermont Family Network
• National Alliance on Mental Illness (NAMI) Vermont
• Brain Injury Association of Vermont
• Vermont Association for the Blind and Visually Impaired
• All Brains Belong VT

In conclusion: thank you

We really do appreciate you considering how to be more inclusive in terms of disability and accessibility. This work matters. Inclusion for people with disability matters.

And finally:

One, resist the freak out. Again, accessibility can be hard, but it’s a process. You just keep at it. You just keep doing things, keep trying to make things better. Take this, take all the examples I’ve given you, all the recommendations I’ve given you today, and just pick one. Pick one, and decide for the next 30 days, that’s what you’re going to focus on. Maybe write it on a sticky and put that sticky on your laptop screen, so it’s there whenever you’re sitting down to work and you’re like: “Oh, that’s right. I’m going to focus on plain language. I’m going to focus on plain language. Plain language.”

And then after 30 days, maybe pick something else from the recommendations that we’ve given here and focus on that for the next 30 days.

Next, none of us work in a vacuum. Always ask for help if you need it. Contact CDCI. Contact the other advocacy groups in Vermont and ask, what’s the best way to do something. How can we get together?

Three, get feedback from people with disabilities. People with disabilities are the experts on disability. Remember: nothing about us without us.