V21 Access Keynote

Hello everyone! My name is Stefanie Lyn Kaufman Mthimkhulu and I use she and they pronouns. I am speaking to you today from Narragansett and Wampanoag land in unceded Providence, Rhode Island. I am a white, queer and non-binary, Disabled and neurodivergent educator, facilitator, parent, non-clinical healer, and strategist. I am also the Founding Director of Project LETS. 

I’m excited to be sharing space with you all, and I want to thank everyone and honor all of the different types of thinking, leadership, and skills necessary to make this conference happen (including our captions and interpreters). 

I am here today with an invitation, an offering, and a welcoming to shift your lens on something deeply important to me: Disability and access. 

Disability and access are often afterthoughts. It’s on our to-do list, but never quite near the top. The truth is, for many of us, access is not a priority until we have become Disabled by something. Until a barrier presents itself, and we get a glimpse into just how inaccessible the world that we’ve created is. Then when the barrier is removed, we quietly move back into the ease and privilege of being non-Disabled. 

It wasn’t until the COVID-19 pandemic began, that we saw a slight societal tilt towards access. But not because Disabled people have always needed these accommodations; it was because, for the first time, many non-Disabled people needed them. We quickly saw entire companies and universities become remote in a matter of days; flexible work and school hours; the integration of live captions and ASL into many online spaces; and live streaming of events and conferences that had always been held in person. 

The fact that we can all gather here today, virtually, is an access measure. This is how Disabled people have built community. This is how we have survived. 

Disabled or not, we all benefit from access. 
It’s in all of our collective best interests.   

I often ask people to close their eyes and tell me the first thing that comes to mind when they hear the word Disability. Maybe you see a wheelchair user or a service animal or a person walking with a limp or another visible marker of impairment or difference. 

Maybe you think of failure, and loss, and something you absolutely don’t want to be.

Disability is wheelchair users who can also walk; epileptics and those of us who shake and tick and whose bodies move in unconventional ways. Autistic people who create new universes. Immunocompromised people who are still wearing masks because we are always at risk. Disability is those of us teaching in higher education, and those of us confined to cages. 

Disability can look like anything, everything, and nothing at all. 

Disability looks like me. 

I almost didn’t make it through college because of access being denied at every turn. Because of often well intentioned people who thought they knew my bodymind better than me, who thought I should take time off from college until I could walk again. I almost didn’t make it through because I literally couldn’t navigate Brown University’s campus, which is located in one of the most physically inaccessible cities in the country. I have many memories of crawling to meetings, to classes, dragging my walker behind me while students and faculty walked by. If you saw me at the time, you might wrongly assume that the problem was my deteriorating body, and a spine that could no longer hold itself. 

Yes, I was in pain. But what made me suffer, what was truly violent and intolerable, was an inaccessible institution that never thought of me and never considered a person like me could be there in the first place.

This is the ideology we push back against when we work to center access as a practice. 

In centering access and making space for Disabled people, we won’t always get it right. There is no roadmap to get where we need to go, and it’s very hard, if not impossible, to always meet everybody’s needs in a space. 

Some people need to work from their beds, and some people cannot get a single thing done when they stay home. Centering access means we have an expectation of difference. We look at things from multiple perspectives, and know there is no one way or method or platform or approach that will work for everyone. 

Centering access means we consider Disability alongside its intersection with other identities and systems of power and oppression: will there be food for people who are food insecure? Will it be sliding scale so low-income folks can join? Childcare so parents can come? Seats big enough for fat folks? Will it be scent free so folks with chemical sensitivities can join? Are there gender neutral bathrooms?

Access is more than that thing we do with because we should, because it looks bad if we don’t. 

Access is a language for how we care for each other. 

Access exists in that sacred space between relationships. It’s a delicate dance, an energetic exchange, a non-verbal way of saying I value you enough to make sure you are here, you are able to communicate in the way that is most comfortable for you, you can breathe here, you can rest here, you can use the bathroom here, you can be your full self here, you are believed here. 

Access is not an obligation, a checklist, or a good deed. It’s our collective moral responsibility. 

I’m not just talking about putting captions on a video and calling it a day. I’m talking about how you respond when your employee spends a month in a psychiatric unit. 

Or if your coworker has frequent doctor appointments that interfere with your teams standard meeting schedule? 

Or how about when someone doesn’t follow through on a task or project? Do we assume they’re lazy and don’t care? Or do we extend grace and compassion, acknowledge our frustration, but ultimately recognize that unmet needs and unseen barriers are the more likely causes?

Terms like access-centered practices and Disability Justice aren’t for placing on our webinars and social media posts just to attract a new audience. They are terms of deep meaning. They come with histories and lineages-- from people like Patty Berne, Leroy Moore, Stacey Milbern, and Mia Mingus-- people that have made a commitment to valuing the wholeness and humanity of all Disabled and neurodivergent people-- with no exceptions. 

I will be the first to admit that the values of Disability Justice and access-centered practices are deeply in conflict with the realities we navigate daily under capitalism. 

Yet, there are always moments when we as leaders are given two choices: do the thing that yields the most profit in the quickest way; or do the thing that is morally and ethically right, the thing that is aligned with our values. In the process of living with integrity and living my values, I have lost many things — opportunities, grants, relationships, access to spaces. I have sacrificed, but I have also gained so much. 

I want to be clear: I am not asking you to sacrifice everything, or change it all at once. This all starts with a single opening. A crack in the armor that allows us to move through the discomfort, the defensiveness, the rising pressure in our chests that pushes us to say “But wait!” 

We don’t have time to wait. 

What is one thing you learned about Disability that may not have been the whole truth? What is one thing you can change today to make your work more access-centered? Where are the gaps in your story? In the story you’ve been told? What relationships do you need to make right? What have you lost because of ableism? 

Those are the questions I care about. 

Because I can teach you all about terminology-- to avoid special needs, wheelchair bound and to please, I beg of you, just say the word Disabled! 

I can show you how to make your social media pages accessible and pin an interpreter’s video on Zoom. 

I can tell you about how far too many organizations use Disabled people as tools and props: to elicit sympathy, to raise money for cures to eradicate us, to inspire others. 

If you’re ready to make a change, there are so many places to begin. 

But first I need to know: What story are you invested in telling? 

If the storyteller doesn’t fundamentally change the way they’ve been taught to think about and value Disabled people-- the words and the captions on the screen mean very little. If the story doesn’t center the experience of those of us who are directly impacted, and shift the needle towards liberation, why tell the story in the first place?

As communicators, your worldview and how you understand Disability matters. It sets the stage and tone. It shows what’s acceptable. You have the power to either do this work in solidarity with Disabled people-- or continue to built upon a legacy and culture of tokenization… all through the words you choose and the lens you have.

So when the time comes and you’re building out an access-centered plan or Disability Justice program or reaching out to the Disabled community-- don’t include us or hire us or work with us because you feel bad, or because you think that autistic people are perfect for organizing your spreadsheets or building your backend systems. 

Include us because we are resilient dreamers, creative strategists, life engineers, and time travelers. Disabled people have faced barrier after barrier, somehow never letting the water fully engulf us. We cannot afford to hold onto our pride. When something isn’t working, we change it. We intervene when we can, knowing so much is out of our control. 

What you see as a step backward, we see as a necessary pause and an opportunity for reflection and a change of direction. Crip time tells us everything happens on the cycle it should: seasons changing, birth, flowers blooming in the Spring. Because of this, Disabled people know how to trust the pace. We adapt. We understand how complex systems work. 

To put it simply, our crip wisdom makes us invaluable. 

When you center access you offer us more than a door stuck halfway open. 

You offer us equity, opportunity, and self-determination. 

When you center access, you improve the conditions of your organizations, work culture, and environment for everyone. 

If your values are aligned with anti-oppression, diversity, equity, and inclusion — Disability is your business. If your goal is to create a work environment, culture, programs, and services that center the wholeness and humanity of your team and community — access is your business.

Because when we are given what we need to thrive, we are all capable of doing incredible things. 

That starts with a recognition that ableism is not just a problem out there. It’s in here. In our organizations. In our teams. 

When we center access, we increase our connection to everyone. Disabled people are the largest marginalized group in the world. We are your employees, your healers, your children, your best friend from high school. We are one in four in all of our virtual rooms here today. 

Sometimes, I think back to college— wondering what could have happened if I were given the time and space to properly focus on meeting my needs? If I could have explored my differences and learning styles without shame and fear, but with openness and acceptance?

Before we can show you just how excellent we are, we need you to make space for us when we are not so excellent at all. 

I will never forget a moment during my freshman year of college. I had gone to Health Services when my legs first stopped working. After explaining some of my symptoms, The doctor looked at me, then looked down at my medical history. She said, “Let me tell you the truth. I think you’re making yourself sick, and you’re dealing with a lot of stress. You can’t compare yourself to the other students here. This is Brown University. Some students are running their own non-profits.” Little did she know, I was too. 

And now 8 years later, I have the honor and privilege of leading an entirely Disabled and neurodivergent team-- redistributing resources and opportunities to those of us who nobody ever believed in. Those of us who have been disposed of and left behind. 

Disability Justice means we leave nobody behind. 

This is where it all begins. 

This is access. 

Let’s make this work pleasurable, and approach Disability from a place of curiosity and joy. Together. 

Access is not a chore or a performance of perfection.

This is muscle to flex and train until we wake up one day and could never imagine a world that doesn’t look like the one we’re trying to build now. 

Access won’t feel like an add on or a burden, because it’ll just be what we do. It’s how we take care of our people. 

This is your invitation.