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Imani Barbarin: Creating Accessible Spaces for Belonging

July 24, 2023
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What does it mean to create truly accessible spaces within your collective work?

At the 2023 Collective Impact Action Summit, we explored this question and more in a keynote conversation with Imani Barbarin (Crutches and Spice), who is a disability and inclusion activist, speaker and content creator.

In this fireside chat, Imani Barbarin and Miya Cain (FSG) discuss what components can create a truly accessible culture of Belonging, including how directly addressing the inequities experienced by disabled people is necessary to reach broader societal change. They also explore the long impact of the Covid pandemic, and how the intersection of multiple identities is important to understand when building accessible spaces.

Preceding this discussion, we’re delighted to share a spoken word performance by artist and facilitator Kayla Brooks, titled ‘You Belong Here’. Introducing both Kayla’s performance and the following keynote discussion is Cindy Santos, Senior Associate at the Aspen Institute Forum for Community Solutions.

Ways to listen: You can listen below or on your preferred podcast streaming service, including Itunes, Spotify, Simplecast, iHeartRadio, Amazon, and other podcast apps.

Please find a transcript of this talk further down this page.

Resources and Footnotes

More on Collective Impact

Music

The Intro music, entitled “Running,” was composed by Rafael Krux, and can be found here and is licensed under CC: By 4.0.

The outro music, entitled “Deliberate Thought,” was composed by Kevin Macleod. Licensed under CC: By.

Listen to Past Episodes: You can listen and subscribe via Itunes, Spotify, Simplecast, iHeartRadio, Amazon, and other podcast apps.

Podcast Transcript

(Intro) Welcome to the Collective Impact Forum podcast, here to share resources to support social change makers working on cross-sector collaboration.

The Collective Impact Forum is a nonprofit field-building initiative that is co-hosted in partnership by the nonprofit consulting firm FSG and the Aspen Institute Forum for Community Solutions.

In this episode, we’re sharing a keynote conversation from the 2023 Collective Impact Action Summit that explored questions around how to prioritize accessibility when creating a culture of Belonging. Joining us for this discussion is Miya Cain, who is associate director at FSG, and Imani Barbarin, who is a disability rights and inclusion activist, speaker, and content creator.

In this fireside chat, Imani and Miya discuss what components can create a truly accessible culture of Belonging, including how directly addressing the inequities experienced by disabled people is necessary to reach broader societal change. They also explore the long impact of the covid pandemic, and how the intersection of multiple identities is important to understand when building accessible spaces.

Preceding this discussion, we’re delighted to share a spoken word performance by artist and facilitator Kayla Brooks. Introducing both Kayla’s performance and the following keynote conversation is my Collective Impact Forum colleague Cindy Santos, who is senior associate at the Aspen Institute Forum for Community Solutions. Let’s tune in.

Cindy Santos: I now have the incredible privilege of introducing Kayla Brooks. Kayla is a proud native of Memphis, Tennessee. She’s a true creative at heart. Kayla is a poet, she’s a writer, she’s an actress, and a lover of storytelling. She has a national reputation as a trainer and facilitator and she’s a results-base facilitation coach and has more than 10 years of experience facilitating conversations with organizations and teams. She enjoys supporting groups with navigating difficult conversations and arriving at sustainable solutions.

Kayla holds a bachelor’s of science from Vanderbilt University and Human and Organizational Development and a master of public service from the Clinton School of Public Service in Little Rock. In addition to being an artist and a facilitator Kayla is a 200-hour RYT yoga teacher and an avid traveler. Kayla, we can’t wait to hear from you.

Kayla Brooks: Thank you, and good morning. This piece is entitled You Belong Here.

I belong here
You belong here
We belong here

We could be…
A harmonious collection of energies
A cacophony of beauty
We call this intentional community
A hodge podge
Of this and that
Business suits meets dirty slacks

Always putting people out
What about bringing em in
Always silencing voices
What about listening ears
Questions and query
Oh my
Are we not weary
Of the toil
The burden
The exhaustion
Of building fences not bridges
Of balancing on the backs of others instead of extending hands
Of shutting out vs bringing in
What about altering the present?
Reimagining the future?

This is home to many
Not just the some
In sum
Come get you some
Whatever it is that you need
Because you belong here
I hope you Be Long Here
Exist as your whole self more than a short period of time
You belonnnnnnnnnnng here
This yo home here

Nay sayers may say not
But your heart knocks
Against your breast
Send these lil vibrations through your chest
You’re alive and breathing
Most certainly you have meaning
Big, medium, small
If you walk, roll, or crawl
Your difference, my difference
Makes us dynamic

How do we amplify voices
Of the marginalized and discarded
Overlooked and downtrodden
Proclaim we/you/ they are not inferior
But humans to be acknowledged and considered

You have a place here
You get to be a human being
A human being who is young, old, slim, fat, undocumented, disabled, differently abled,
bilingual, Muslim, Jew, Christian, Hindu, a human being

You are worthy
Worthy of being included
Non binary, trans, gay, poor, uneducated, formerly incarcerated, mentally ill, unskilled
Refugee, sexually free, abused, misused, indigenous, black, brown person
A woman
In this moment
I create space for you/ there is a place for you
I carve out room
For you
For collective access
of the oppressed
to just breathe and be for a moment
a reminder you deserve
we deserve
to exist and thrive
in a community designed with us in mind

I belong here
You belong here
We belong here

Thank you.

Cindy Santos: Kayla, thank you so much for sharing your gift with us. Art gives us not only the ability to express ourselves but as we experience each other’s art, just seeing the world through their eyes and thank you for allowing us to see the world through yours.

When we were conceptualizing this convening, we knew that we wanted to talk about belonging. There is no stronger voice on our team than Tracy Timmons-Gray who always reminds about intersectionality.

Today, we have the great pleasure to participate in a fireside chat between Imani Barbarin and Miya Cain on the need for reflection and inquiry when creating accessible spaces for belonging. Imani is a disability rights and inclusion activist and speaker who uses her voice on social media platforms to create conversations engaging the disability community. Born with cerebral palsy, Imani often writes and uses her platform to speak from the perspective of a disabled Black woman. In the last few years, she has created over a dozen trending hashtags that allows disabled folks the opportunity to have their perspectives heard while forcing the world to take notice. Imani is from Philadelphia, my hometown, and holds a master’s in global communications from the American University of Paris. Her published works include those in Forbes, Rewire, Healthline, BitchMedia, and more. She runs the blog, crutchesandspice.com, and a podcast of the same name. She currently serves as the communications director for a nonprofit in Pennsylvania. Welcome Imani.

Miya brings a decade of experience working in public health in the U.S. and globally. She is currently an associate director at FSG, a nonprofit firm that partners with organizations working to advance social change. Her work at FSG has centered on multisector collaboration and foundation strategy development with a particular focus on advancing physical and behavioral health equity for marginalized and underresouced communities. We welcome you both for this fireside chat. Thanks for being with us.

Miya Cain: Thank you, Cindy. Welcome, Imani, and welcome everyone. Thank you all for joining us today for what we strive to be a reflective conversation that sparks both inquiry and action.

In today’s discussion we want to build off of yesterday’s conversation with our opening keynote, Ruchika Tulshyan, which focused on the inclusive behaviors and practices to support a culture of belonging, and ultimately to support our collective work.

Today we will go deeper on the importance of self-reflection and personal inquiry when building spaces that encourage us and our partners to feel like we belong. These activities are needed often to overturn bias and harmful narratives that we may be carrying with us and help us to be mindful about how we relate to ourselves and to each other.

So today we want to talk about the intersections of belonging, disability, and access. Disability touches every collective impact initiative because disability touches all of us. Whether we are disabled ourselves or we know someone who is disabled, whether we were born with a disability or we developed one later, whether it’s visible or invisible. Disability can be physical, emotional, mental, developmental, intellectual, and related to the way we learn. It can encompass those of us affected by chronic or long-term illness. In the U.S., 26 percent of adults are disabled in some way or one in every four adults so to be explicit, if you’re working in a collaboration with 20 people, you likely have about five disabled people in your group.

Disability also intersects with other formative identities including race, gender, sexuality, gender identity, economic status, religion, caste, language, geography and others. The experience of being disabled can have a compound effect on your other identities so if someone disabled and White can have different experiences than someone who is disabled and Black or indigenous. Being disabled and living in a rural area might be really different from being disabled in an urban area. If you’re disabled in the U.S. but English is not your primary language, that can be a very different experience compared to folks who are native English speakers. Disability is its own identity and it can shape other identities that a person may have.

So many of us here working on collaborations that focus on a variety of issues related to education, learning, health care, community development, economic mobility, employment, violence prevention, the environment, climate change, arts and culture, homelessness, and disability and the disabled community is part of all of these different focus areas. So when we talk about how we continue to advance our collective work to reach equitable systems change, it’s critical to include disability as a key part of that work.

So where do we start when we want to build a culture and a sense of belonging that would be inclusive to the very diverse disabled community when there isn’t just one disabled experience? What are the questions that we need to think about? What are the questions we need to ask ourselves and our collectives, and how do we move from inner reflection to action to making real changes that improve access for all? That’s where we’re going today.

So, Imani, to begin this conversation we would love to hear more about you. How did you get started with your advocacy and narrative work around disability?

Imani Barbarin: First of all, thank you all for having me. My name is Imani Barbarin. I am a Black woman. I’m wearing a pink sweater and a red chin-length dreadlock. That is an image description by the way just as a form of access.

When I first started my advocacy journey, I was fresh out of college for the first time, and I started writing my blog, crutchesandspice.com, and during my college career I was kind of thrown for a loop by just how little support I was getting as a disabled person because throughout my entire life I had kind of been taught to normalize, to constantly normalize, and also to be a Black woman first above all else which means don’t ask for help.

So when I first got to college I was basically failing out of college because I was not asking for the accommodations that I needed. I didn’t think I needed them. If I was in college, that is a space where it is merit-based so I shouldn’t be asking for any accommodations, and that kind of failed me in the moment, and so I looked to find other examples of disabled adults existing, and the only two people I could find ironically were Stevie Wonder and Ray Charles, and I was like, that’s not going to do it. This is not what I’m experiencing right now.

At the time I didn’t have access to social media. It wasn’t like it didn’t exist, it just wasn’t something that was big in my life at the time yet, and so I began writing and writing from the perspective of a disabled Black woman in the hopes of creating the representation that I really wanted to see, particularly being a Black disabled woman and really talk the intersections, and through that I was able to find community in people online who shared my own experiences.

Miya Cain: That’s beautiful. So you didn’t see the role models that you needed to see and so you began writing from that perspective of a disabled Black woman so that you could create that representation that you wanted to see and be that voice for other people.

Imani Barbarin: Yes.

Miya Cain: I’ve had a chance to watch and listen to a lot of your amazing videos on TikTok, Instagram, and Twitter, and some of them talk about various narratives about disability and being disabled so I’m wondering if you can share a little bit right now about what you see as some of the most prevalent narratives around disability in our culture.

Imani Barbarin: Yeah, the very big one, the one that kind of feels like the roots of these narratives is the idea that once you are disabled or once you become disabled, you are no longer seen as a reliable narrator of your own story. You’re no longer seen as the director of your own life, and anybody can act upon you or act upon their own biases or their own ideas around disability in order to do quote-unquote what’s best for you.

We see this quite often in the history of institutionalization. From the 1800s until now, institutions still exist, we have basically shuffled disabled people out of society. We have isolated. We have specifically kept disabled people out of the light despite our own protestations, despite disabled people themselves saying this is not what I want for my life, and it’s really important to note that around the ’60s and the ’70s, disability rights movement started quite basically around transportation, and just the idea of being able to go where you want to go because if you think about just the ways in which we were moved or shuffled about, you don’t have really the ability to direct your own life. Even something as simple as hopping on a train just to go to the doctor’s office is still not feasible for a majority of disabled Americans. So that’s kind of like the big, tantamount issue in regards to disabilities, that we’re not seen as reliable narrators.

And then additionally we kind of use disability as a weapon against marginalized groups. So if you’re a Black and disabled, if you’re indigenous and disabled, you’re going to experience higher rates of disability due to the systems that are in place. So Black people rate of disability as one out of four, and indigenous folks have a rate of disability at around one out of three. When we think about how systems are built to interact with both Black people and indigenous people, it paints a very stark picture.

If you live in a previously redlined neighborhood, of course you know that was a form of racial discrimination in housing. If you live in a redlined neighborhood, you’re more likely to experience respiratory illnesses and illnesses as a result of pollution. If you’re on an indigenous reservation, you may likely not have access to clean drinking water or food access which can result in gastro-disabilities and blood sugar issues so when we think about disability and we think about who is to be believed about having a disability and who needs support, it paints a very broad picture into how we decide who and when gets that support based off of other mitigating factors in their lives.

Miya Cain: Absolutely, and thank you for sharing about the narrative about sort of losing control over your own life or not being seen as a reliable narrator. I know personally dealing with mental health challenges, that’s something that I’ve faced and I know a lot of people deal with that as well.

So a lot of these biases and narratives, a lot of this equity work starts with work on yourself, understanding your own identity, understanding what narratives and biases you might be carrying with you, and it takes a lot of intentional inquiry and reflection.

So if the folks here are interested in starting to peel away the negative biases, the negative narratives they might be carrying about disability, what questions do you think they should be asking themselves? What can they be reflecting on?

Imani Barbarin: The first thing I want to do is I always sort of reaffirm to people that your biases, the way you view yourself as it pertains to disability, illness, or weakness are not unfounded. I talk to a lot of organizations that are constantly like, well, how do people combat ableism? How do we get people to come forward with their disability and ask for help? We have to really understand the history of disability, and to realize it is a reasonable reaction to kind of beat yourself up when you feel like you’re less than, and disability is constantly seen as the most less than identity across the board. So I want to first affirm that because I think it’s really important that we recognize that these fears are not unfounded.

But one of the things that I find most pervasive is we perform ability as a society a lot for the sake of being seen as valuable. We perform busyness and productivity at times in our life when it’s not even necessary simply because you want to constantly be seen as working, moving, and therefore valuable, that we cannot be cast aside, that we cannot be isolated or ignored if we’re constantly working.

The ableism personally and a lot of times for nondisabled people or people who think that they’re nondisabled usually comes in the form of ignoring when they need to rest. Rest is seen as laziness. Rest is seen as not being productive. Rest is being seen as not taking the correct opportunities at the correct times but rest is just as important as eating, as working, as anything else in your life. Rest is just as important.

That’s usually how it shows up in people’s lives, their inability to take a step back and be like, I need a nap or I need to sit down or I’m doing chores in a way that is physically taxing even though I know that there’s an accessible way to do it, right? So that’s usually how that shows up.

It also comes in the form of not asking for help which, to be fair, I’m one of the worst people to come to with that– but it’s about not asking for help, not understanding your own personal boundaries around energy and labor and ignoring your own body signals. That’s usually how it forms, and one exercise that I tell people to do is once you leave here, the next full day, your next busy day, I want you to go in a journal and I want you to write down everything that you did, every single thing that you did from brushing your teeth, the minute details, and then I want you to also write down next to what you did, how you did it. So how did you do these things? Were you doing dishes standing? That’s always my perfect example. Did you do dishes standing knowing your back hurts and you’re tired. You could do them sitting. Nobody said you can’t. Nobody’s watching you. Again, we perform a lot of productivity and a lot of just, you know, these rigid standards for how things should be done without engaging our imagination about what they could be in order to preserve ourselves.

Miya Cain: Yes, we should all do that homework, just write down everything we did for one day and how we did it, and then think about are there ways that we’re ignoring our own needs, and really take that time to understand our own needs, and prioritizing rest when it’s needed too.

You talked a little bit about this, and I wonder if you can talk even more about some of the intersectionalities of disability with—you talked a little about Black and indigenous people but I’m also wondering about intersections with gender, income level. What could be helpful to think about when we’re really trying to understand that full picture of disability and how disability underlies so many different identities and backgrounds.

Imani Barbarin: Sure. I always tell people to think of it this way, that White supremacy is the goal. Christofascist White supremacy is the goal but ableism is the toolkit. Ableism is 100 percent the toolkit. That is how we weaponize disability against marginalized groups.

So Black and indigenous folks have a rate of disability around one fourth and one third respectively. Then you have women, you have a rate of disability of one out of four. Trans folks have a rate of disability of two out of five. LGB folks who are not considered trans have a rate of disability of one out of four, and you’re more likely to be poor if you have a disability, not just because disability is excessive but also because you’re legislated into poverty once you have a disability. You are not allowed to make more than a certain amount of money if you want to qualify for disability programs or health care programs.

So it’s a very large picture, and when we talk about the weaponization of disability historically, I think of things like drapetomania. That was a mental illness that was diagnosed to people who were enslaved that wanted to be free. Freedom in an enslaved person’s mind was considered a mental illness.

You also can think about the idea of hysteria with women. Women who were seen as too bold or too brash or too unbecoming to the general public, they were diagnosed with hysteria and institutionalized en masse for not adhering to social standards at the time.

We also quite often conflate queerness as a mental disability. We’ve seen this historically with gay men in prison in particular across the section of history but not only that, right now we’re watching as legislators legislate that trans people have to be assessed for autism in order to get gender-affirming care which means that they will be more likely to be victimized under the systems of conservatorships and guardianships, and not allowed to transition anyways.

So we talk about the weaponization of disability, this has been an ongoing history that is happening to us today, today, and we hear it a lot at times almost in a dog whistle around different isms, right? The jokes like how many legs does it take to screw in a light bulb, or the idea of like mental incapacity, the idea of emotional irregulation. All this is seen as inherently disabling or disability so that we can further isolate, ignore, and marginalize people, also legislate them into poverty, and then blame them for their own circumstances.

Miya Cain: Wow. Thank you so much for sharing that and just breaking that down because I think the history is something that not everyone knows and that we really need to make sure that we’re facing in order to change things and create the society we want to see now.

Access is a critical part of creating a welcoming space and a culture of belonging for people with disabilities but then again since there’s such a wide spectrum of disability, there’s not one solution for providing access to all so what do you see as the most critical or most necessary components to create a truly accessible culture, one that will be welcoming for disabled community members? What would make up that culture? What would you want to see?

Imani Barbarin: I think one of the things that we do not engage with enough is our imagination about what could be. We have all these ideas of what we don’t want to have happen but we can very rarely voice what exactly we want to have happen, what exactly it looks like.

For me, a culture of accessibility is one in which everybody’s needs are met and disabled people are in positions of power where we can dictate and we can inform how those spaces want to be—I can’t point to one or two things and say like this is what an accessible society is going to look like because that’s just not possible. There are as many different iterations of disability as there are people on this earth but what I would love to happen is that people have as many options available as possible.

I think that we have universal designs with good reason because we want to be able to have as much of a catchall as possible into who can use what accessibility and when. However, it has to be more involved than that. It has to be more personalized than that so I want spaces and places to be imaginative and be collaborative with disabled people in their communities because that’s really the goal. If the stereotype around disability is that we do not believe disabled people about our experiences and we do not let disabled people speak on what we need, then the goal should be that we are in positions of power where we are leading and having our voices affirmed and heard of, and that we are in community with people, we can build these infrastructures together.

So often we get that paternalistic view of disability where we say these one or two things are just what you need and that’s it, and that’s not really the reality. So my goal is not how it will look like but what will it feel like. What will it feel like to be heard and understood and affirmed because that’s something I can articulate. I can’t show you what it looks like. Your imagination is different from mine but I can tell you what it will feel like.

Miya Cain: Yeah, and getting that—having the goal be everyone creating, the community creating the environments for themselves, having the power to shape those environments in the ways that we want them to feel is so powerful and so important.

I want to shift gears a little bit and think about the COVID pandemic. I was just watching your recent video about that actually and the COVID pandemic has had such a huge impact on disabled people in the U.S. both because disabled folks were and are at high risk for worse outcomes from COVID and then also for the millions of people who developed disabilities from having COVID including long COVID.

You often describe COVID as not just a massive death event but an ongoing massive disabling event that has had long-term impacts on our society and culture, and yet it does feel like the current narrative in the mainstream is that COVID is over, and that we don’t need specific COVID supports in place. We no longer need to track data on it, and so when so much of our media and popular culture is touting this it’s over message, what should we all be reflecting on to address the reality of this mass disabling event, and how would facing those questions support this culture of belonging that we say we want to have.

Imani Barbarin: First of all, when I think about the idea of COVID is over, COVID is completely done for, I want people to ask themselves who benefits from that narrative because it’s not everyday people that are breathing in germs and infections on a daily basis, it is a government that does not have any desire to support you once you become disabled. They know that the system is so broken that regardless of whether or not you become disabled, they don’t have to do anything. They’re not going to do anything, and when we talk about COVID being over, it’s not over. It’s very much still real and has a lasting impact on our lives, our infrastructure.

We watched as basically most of our institutions collapsed before our eyes, and we’re sitting here pretending like none of that happened. Our hospital system to this day is at capacity. Our hospital beds are at this moment filled with COVID patients. People are still dying from it or still dealing with infections from it so this idea that it’s over doesn’t benefit anyone, and particularly people who are marginalized who already have the short end of the stick when it comes to interacting with medicine systems and getting care from medical systems.

So we also have to look at the fact that disabled people predicted in March 2020 that this would be massive disabling event. You don’t walk away from something as intense as an airborne illness that attacks every single system in your body through your veins, through the venous system, and go, that was that, that’s over. No, no, no. I’m hearing numbers between eight and ten million people in the United States alone are dealing with the long-term impacts of COVID-19 and like I said before, once you become disabled, people cease to believe that you’re saying about your own body so they’re also being gaslit and ignored from the medical system that they’re trying to interact with to get help.

We’re also seeing a ton of people interact with the disability services system and trying to get disability payments or Medicaid and they don’t quality because they either make too much money, they cannot prove that they even had COVID to begin with, they don’t know how to interact with the system at all.

Then there’s situations in which if you have a disability, you’re interacting with the police system and mass surveillance. In some places the sheriff’s department will come to your home and see if you’re living above your means. So when disabled people were begging people to take it seriously and continue to take it seriously, you are begging not to have to interact with the system to save yourself, to save us by saving yourselves, and still to this day that has been largely ignored.

Miya Cain: Thank you, Imani. We’re going to shift now. We’re going to transition to any questions that people in the audience have after listening to this conversation so please feel free to share in the Q&A in the chat, and we’ll be taking a look at your questions and sharing some for Imani to answer.

Interesting. There’s a couple of people building on your conversation about COVID. We have one question saying so many spaces became accessible virtually during COVID which is things that the disability community had been asking for for years, and people had said, oh, it’s not possible, and then during COVID suddenly it was possible so how do we continue to protect that space, the more accessible space, and maybe just building on that question, how do we start creating spaces, being more creative and more imaginative about things that we think we can’t do but actually are possible when people put their mind to doing it.

Imani Barbarin: Sure, so one of the things I want people to understand about access is that access is often a filter of who belongs in that space. A prime example of this comes with employment and job descriptions and applications, and you’ll find in jobs that don’t require them, a requirement for people to be able to lift 30 pounds, for data entry jobs, for scanning IDs at the gym, to be able to lift 30 pounds, and they do that on purpose, basically so disabled people do not apply, and the same kind of logic can be positioned with accessibility and who deserves to have it based off of who belongs in that space.

The reason why accessibility became more prevalent during the pandemic isn’t because disabled people needed it, because we needed it. What we’ve been calling for for decades, we knew that all of this was possible, that we could be doing these things. The reason why accessibility became more evident during the pandemic is because nondisabled people need it. They needed it for productivity and for the churning of the economy, what have you, and so we have to combat the underlying attitude around accessibility and think about who actually belongs, who belongs, who deserves that access to spaces.

That’s the real question because all of these things are possible. It’s not a matter of funding. It’s not a matter of whether these tools exist or not, it’s a matter of do we actually want them to exist? Do we actually have a desire to interact with disabled people? That is the underlying issue here. It’s never been about the capability of the accessibility. It’s always been about the desire.

Miya Cain: We have a couple of questions about the workplace that I think can continue that conversation.

One person says I currently have a disability, I have MS, and sometimes it can be difficult in the workplace. I don’t look sick but I am. How can you, as an employee, handle situations as such?

And then another person says, thank you for speaking about the importance of rest. I live in a culture in which people brag about working long hours and sleeping short hours. How do we change our culture to value taking care of ourselves?

So I’m kind of hearing these themes of how do we actually change our workplaces and change the culture to value taking care of ourselves, and how do we not leave people behind just because they don’t look like what we think a disability looks like or they don’t present in a certain way that people would think needs supports or accommodations?

Imani Barbarin: Right. When it comes to disability, particularly invisible disabilities, there’s this idea that disability is only recognized when there’s a physical differential between a nondisabled person and a disabled person, and that usually comes in the form of mobility aids, certain facial differences, physical differences, things like that, and they’ll be able to point—the nondisabled people can be a little pointy and say that over there is disability, not what I look like. It’s all about the self, and that’s why I tell people to combat how you view ableism and disability within yourself because that will be projected on to who else beliefs about having a disability.

When it comes to the workplace though, what I can always tell people is create a support system for yourself amongst your peers, always amongst your peers. Make sure that people, not just yourself, are invested in your accessibility, and that you all are brainstorming and workshopping it together and then coming up with plans that you can take to your employer together. There’s safety in numbers and that also applies to accessibility and accommodations.

Also, just as a point of just paperwork, make sure you have a hard copy or a copy or just something, evidence of any conversations that you’re having around your accommodations, any emails that you have, that should be in your physical possession or in your control. Do not leave it up to the servers of your employers. Do not leave it up to your folder or your email that your employer controls. Keep that for yourself, OK?

Also, as it pertains to rest and cultures of rest against harassers that do not see rest as worthy, I always ask people what are they missing by not resting because hustle culture is disabling as well. If you’re constantly running yourself ragged, if you’re constantly overexerting your body, if you are constantly going, going, going, you’re going to harm your body eventually. It’s just the truth. You’re just doing it in a different way than what we think disablement looks like so keep that in mind as well.

Miya Cain: Thank you so much, Imani. There are a couple questions coming in about what you mentioned around legislating poverty for people with disability. People have said how do we stop legislating poverty for people with disabilities, and they are a lot of +1s on that question, and then another related question was can you speak more to the point about how a salary cap is placed on individuals with disability, what changes would you recommend, and I’ll add how can we advocate for those changes?

Imani Barbarin: Sure. This is one of my favorite questions because it really relies on nondisabled people being aware of disability.

OK, here’s the thing. So in the United States it is legal for disabled people to be paid below the minimum wage in about 30+ states. I think it’s around 36 now. Several states have outlawed it but it is legal to be paid below the minimum wage in more than half of the states in the United States, and that is due to a 1938 Fair Labor Standards Act which says that you can pay disabled people pennies on the dollar.

But as also a part of that Fair Labor Standards Act is that tips workers can also be paid below the minimum wage, people in service jobs like restaurant servers and things like that could also be paid below the minimum wage. That came about after enslavement and kind of the like the great rebuild of after enslavement because they didn’t want to pay Black people an equitable wage, and the Labor Standards Act are still a part of our idea around disability today.

Every single time you see legislation asking to further the minimum wage for everyone, like a higher minimum wage, a higher federal minimum wage, it is almost always attached to increasing the minimum wage for disabled people as well, and there are advocates that are against that because if you are disabled and you make too much money, you no longer qualify for programs, for services, for health care, for housing, for all of these things so there’s this coalition of parents, family members, legislators that are against a higher minimum wage for everyone because it means that disabled people will no longer qualify for the services that we need.

We have income caps on every single social safety net in the country, and if you make more than that, you cannot qualify for basic necessities to live as a person which is why you’ll find that when people become disabled, they become poor almost immediately. They have to spend down their money. They have to spend down their resources. They have to make sure that there’s not too much money to their name. You’re not allowed to have more, on average, than $2,000 per month in order to qualify for a lot of these services.

Now there are some programs like Ticket to Work through Social Security that will allow you to make more but a lot of disabled people are still fearful of making too much money for the sake of no longer qualify for their health care so you are literally legislated into poverty. If we want to combat poverty for everyone, if we want to combat—we want to make sure we have fair wages for everyone, we are going to have to focus on our social safety nets for disabled people, otherwise we will be talking ourselves into circles.

We need to support higher minimum wage, we need to support getting rid of means testing and these income limits for assistance. That is the surefire of making sure that everybody—rising tide lifts all boats as they way, making sure that we are caring for everybody essentially.

Miya Cain: Thank you for that. We also have some questions about power, building power within the disabled community. One question says you’ve talked about a culture of accessibility involving having disabled people in positions of real power. I have found that to be our biggest challenge in working with organizations and schools who are still focused on inclusion as the bare minimum. In your experience, how can we help change that attitude?

Imani Barbarin: In terms of the attitude of like all they need is inclusion and that’s it?

Miya Cain: Yes.

Imani Barbarin: I find that—I’m about to get controversial.

Miya Cain: Get controversial.

Imani Barbarin: I find that there are so many organizations dedicated to disabled people that are not run by disabled people, that are not for disabled people. It’s for everybody that has to deal with disabled people. They’ll have disabled people in the room as kind of like we’re inclusive but disabled people aren’t really making any sort of the decisions, and when you push back, when you push back against this idea of like why aren’t disabled people speaking here or why aren’t disabled people actually equitably included in this conversation, well, they don’t know what they’re talking about. They don’t really know why they’re here. We’re just here because it’s a nice outing.

I hate that sentiment because it really speaks to how they view inclusion and accessibility in the first place because if I’m having a conversation and it involves a disabled people’s life, and we are talking about access and the desires of a disabled person, what they want their own lives to look like, and your first instinct is that they don’t know what they’re talking about, it means that you have failed in providing access for them to actually be included. They’re just here as lawn decorations. They’re here as ornaments because if I know that somebody cannot understand me as a communicator which is my job, I will change the way I’m speaking. I will change the way I’m communicating. I will make sure—I will sit there however long it takes for the to understand what I’m speaking about because fundamentally if they don’t understand what I’m talking about, they don’t get the ability to speak to what I’m talking about.

So fundamentally in order for these organizations to be inclusive, to have disabled people empowered, it takes a little bit of humility to realize that you’re not the most important voice in the room, and that other people’s understanding comes before your ability to grandstand on this platform of inclusion that doesn’t actually include anybody. I get so angry with it because I hear it all the time. It happens all the time, and even from family members of disabled people who are saying, well, my child doesn’t do A, B, or C. OK, let’s work some things out. Let’s try some things. Let’s do things differently, and that’s where that idea of imagination as a cultural cornerstone comes into play.

We have to stop thinking of the one, two, and three forms of accessibility that we are so used to, that if they don’t work, then nothing’s going to work. No, no, so I get fired up. I get really fired up about that because I remember being a little kid in programs for disabled kids, and none of the volunteers would talk to me as a disabled kid. I was just there to play, not actually doing anything. I was just there so it’s really important to me that people understand that having disabled people there is not the goal. Having disabled people heard is the goal.

Miya Cain: Yeah, heard and actively participating and having power and having decision making and not just—like you said, not just there to be an ornament or decoration but you’re actually part of the conversation.

Imani Barbarin: Exactly.

Miya Cain: Maybe this overlaps with some of the other questions that were coming around feeling of belonging. One person says earlier you talked about knowing belonging by what it feels like. Can you talk more about an experience where you felt that belonging?

Someone else said can you talk about learning to change your mindset on disability, getting out of the kind of productivity hustle culture, and people +1 to these questions just trying to understand more about what did it feel like for you when there wasn’t a feeling of belonging, and what are some ways that people can be meaningfully engaged people with disabilities in their workplaces and their social environments?

Imani Barbarin: I think I’m going to say this. There’s no shortcut to community. I think every single time I talk about inclusion and building spaces for disabled people, it’s like, well, what do I do right now, what do I do right now. You have to get to know people as people. People can tell when you’re just talking at them or talking to them out of a simple desire to include them, and that’s it or to have them in the room. I feel most inclusive when I’m in spaces with other disabled people because there’s just a general understanding of what a lot of our experiences are, particularly disabled people of color, and feeling like I don’t have to explain much. There is just kind of quiet understanding of what’s going on, what the stakes are, and how we show up for one another, and there’s no shortcut for that.

I know it takes, you know, actually trying to connect with people on shared interests and creating groups about books, whatever, but there’s going to be no shortcut for it. There’s going to be no magic pill for it. You have to get to know people. You have to interact with people or interact with people in a way that is accessible to everyone so that people feel like there’s one less thing to worry about in this putting forth of one’s self. I find there’s no quickness to it. It takes time.

We saw this kind of reaction after the overturning of Roe v. Wade, particularly from White women who were saying what do we do, what do we do, what do we do? You have to get to know the people that you intend to trust with your life because that’s it. That’s the whole thing, and we have so effectively diluted what it means to show up for one another, particularly in the United States, for the goal of capital and money and hustling and taking care of one’s own, it’s just going to be me and I’m going to make sure I have what I have but you do whatever. We have so effectively diluted what it means to show up for people. We need to relearn that behavior because realistically, showing up for disabled people is not any different than showing up for anybody else. It is listening to what somebody needs and being able to meet it or figure out a way to meet that need, that’s it. That’s all it is.

I feel like we’re constantly trying to figure out how to reinvent the wheel and come up with brand new ideas around behaviors when that’s it, that’s it. I feel like when people ask this question, there’s an inherent knowledge of what actually needs to be done, it’s just scary to do.

Miya Cain: I see someone in the chat building on that. They’re saying what stops this inquiry? Is it fear, threats, risk of saying the wrong things? What is blocking people from just investing in relationships and asking people and getting to know people?

Imani Barbarin: I think it’s all the above to be quite honest. I think people fear saying the wrong things but the reality is that so few people show up for marginalized people, that if you’re just showing up, even if you say the wrong thing, people just correct you. That’s it. Like that’s nothing.

If you’re willing to show up, there’s an effort being made there that people recognize. This whole idea like cancel culture and we’re going to roast you because you said the wrong thing, no. Nine times out of 10, if you’re just like, oh, I’m sorry. It’s not harsh. It’s this idea that we have to come perfectly to the table, not just come to the table, we have to come perfectly to it, and that’s I think—I feel like there is merit to why people want safer spaces and to correct people as much as possible but again, there’s a lot of people that just want people to show up for them.

Miya Cain: Showing up and showing up with humility, showing up with inquisitiveness, showing up—being willing to learn with a growth mindset as opposed to having this expectation that you’re going to show up perfectly because no one—we all are learning, we’re all growing so let’s do it together.

Imani Barbarin: Right. There are plenty of people who say the worst thing possible, and I’m like, uh, you’re here. You’re listening. Especially in Philly. Philly has like a dedication to just saying- … There’s a group of—I always find that there are people that are nice but are not kind, then there are people that are kind but not nice. I prefer the people that are kind but not nice any single day because I know they’ll show up. They’ll show up. They’re not going to be polite about it but they’ll show up, right?

Miya Cain: Yes, so now I have a question about sort of looking within yourselves. One person said for people in our lives that are not yet ready to come to terms with becoming disabled in some way and are uncomfortable seeking necessary accommodations, how do we lovingly support them through creating a new acceptance of themselves? I imagine this also extends to people thinking about themselves, like how do you come to terms with things that might be changing in your life, thinking back to our conversation about COVID, a lot of people who are newly disabled or people are experiencing changes so how do we help ourselves and others embrace changes that are happening?

Imani Barbarin: I feel this very much so with aging grandparents and parents that are coming into disability in their own way, and I think you can’t force anybody to see themselves in any way that they’re prepared to see themselves before their time. It’s going to take time. It’s going to take a lot of- a wide berth of them speaking out what they need, and what they want their life to look like as their body or mind changes, and I think that when it comes to identifying as having a disability and asking for help, again you need to remember, you need to recognize that the reason why they aren’t is because of protecting themselves. However, misguided it may be, they are trying to protect themselves from being isolated and ignored and unheard, and that’s a very reasonable reaction.

One of the things I try to tell people is when I talk to Black people about disability, I talk to them in a completely different way because I know that the main goal for me when I try to talk to people are mostly marginalized around disability is that my goal for them is just to get them the resources that they need to get day to day, that they probably just to survive from day to day, not to impose upon them an identity that they may or may not be ready for. I do try to let them know that interacting with the system does require them discussing disability in a very upfront and open way. A lot of times grant funding requires of nonprofits and agencies that they only serve disabled people so if you can’t identify as having a disability, then they literally cannot serve you. So just giving the very stark, very realistic ways that they’ll have to interact with the system but not telling them that they have to identify as anything because again, it’s not for me to say. What I would encourage people to do is help them understand their own body’s boundaries to be like, OK, you look a little tired, let’s sit down a little bit, must make it seem really gentle and being very open and letting them come to that conclusion themselves because you can’t force it. You really can’t force it.

Miya Cain: That comes back to what you were saying before about understanding ourselves, understanding our needs, being OK with and accepting our own needs and limitations day to day that might change. That’s great. There’s a question here about mental health specifically. One of our participants is wondering if you could speak about the stigma of mental health disabilities.

Imani Barbarin: Mental health disabilities are very interesting. Predictably in the mental health disability space, I find more people with mental health diagnoses do not like to be identified as disabled because there’s a completely separate connotation between mental health and physical disability or in that sense so there’s a lot of like this weird separation between the two in the public mind. I think the stigma comes from an inability—people feeling like there’s an inability for them to be able to fully integrate into society while simultaneously still looking like everybody else. There’s this idea that people are—there’s this instinct for society to ignore it thinking that people are either faking it, exaggerating it, making it up, or that they need to inherently be locked away for the safety of everybody else. There really is very rarely any in between between the two, and it’s very—I feel it’s very much so criminalized as well.

We have our greatest, our largest mental health center is the country is the prison system so there’s also the criminalizing and the isolation of mentally ill people or mentally disabled people in that way as well. I don’t know. It’s very hard to kind of give you a grand total of where that stigma comes from. I think it’s all the above. I really do fear in this time of increased attacks on democracy and a desire to institutionalize anybody that is seen as other, in particular mentally ill people are going to get swept up and be further criminalized in this society, and I think that’s extremely dangerous.

Miya Cain: I think I’ll also just add, Imani, I think the culture of individualism or that pick yourself up by the bootstrap mindset, there’s a lot of people that think, well, why don’t you just try harder? Why don’t you just look on the bright side? You know, all of these things that people will blame someone dealing with mental health challenges or substance use as, you know, why aren’t you just trying harder, why don’t you just do some meditation and you’ll be better.

Imani Barbarin: Right, and I was just saying it goes back to this idea of only believing things that you see because otherwise you’re making it up. There’s no real reason for you to be behaving this way, and it’s really not how it works.

Miya Cain: I know we’re coming towards the end of our time. There’s a couple questions here about allyship that people have and about learning more. One person says what books or media do you recommend to further educate ourselves about disability, intersectionality, ableism and all the important topics you have touched on today, and there’s a lot of +1s, and then what will allyship look like to be an advocate for accessibility, how our policy is reflecting the needs of our disabled community, and then the last one is oftentimes a person’s unwillingness to be corrected can lead to further harm. How can we combat this while still protecting ourselves from the burnout that comes with constantly being in a state of educating others on our life experiences and needs as people with disabilities?

Imani Barbarin: OK, that was a lot of questions.

Miya Cain: A lot of questions but we can start with maybe just suggestions that you have, resources that you recommend for people to sort of educate themselves.

Imani Barbarin: A couple of resources. There’s a book called A Disability History of the United States, and that gives an overview of disability history throughout our entire existence as a country. There’s also Black Disability Politics which I think is extremely important that was written by Dr. Sami Schalk. There is an open-source version of it so if you can’t pay for it, it’s available through Duke University Press. There’s also the Disability Visibility podcast and book. Those are all first-person disability stories from the perspective of disabled people of various marginalized identities including queerness, sexuality, gender, race, all these different things. There’s also—like I said, they also have a podcast.

There’s also the Autistic Self Advocacy Network. We’re going to promote organizations that are run for and by disabled people. There’s also Sins Invalid which created the Disability Justice Framework. There’s also Judy Heumann’s book, Being Heumann. That’s a good history of the 504 sit-in. She just passed away I think like a month or so ago so rest in peace to her. There’s my website, crutchesandspice.com, and there’s also disabilityscoop.com. They have current articles on what’s going on in the disability space as well as advocacy and policy. They are a very good organization in terms of making sure that news is reported specifically regarding disability. Those are all sources I can think of right now off the top of my head.

Miya Cain: Thank you. Then the next question is what will allyship look like to be an advocate for accessibility? How are policies reflecting the needs of our disabled community? How can we advocate for better policies?

Imani Barbarin: I want to first reiterate. I want to say the ADA is under attack right now under the Supreme Court. They’re looking to weaken the Americans with Disabilities Act, and who can report an accessibility or sue in the face of accessibility. The ADA is not really—is very minimally enforced, and so to enforce the ADA there are some disabled people that will go around suing places that have complete inaccessibility just to make them more accessible. People think that there is a big money cash grab, it’s just not possible. You’re not allowed to have a cash settlement under an ADA suit but people have this idea that it’s hurting small businesses and they’re seeking to weaken the Americans with Disabilities Act so that people can’t do that and make more places become more accessible so paying attention to that is important.

Also supporting policies around home and community-based services, commonly referred to HCBS. Those are services that allow disabled people to live in the community and to direct their own lives. We have never fully funded those services in the United States. There’s still handfuls of institutions across the country that exist. They are money pits, and they do not—there’s so many issues with them in terms of people not getting access to health care in a timely manner, people dying from neglect in some cases so making sure that we are investing fully in home and community-based services and more governments are putting money towards that.

Also being careful. If your legislator or your politician is investing heap loads of money to do conservatorships and guardianships, that’s a no-no. That’s a no-no. That’s not good. That’s not what we want. We want disabled people to direct their own lives with as much support as possible without restricting their own rights. In some states a conservatorship or guardianship can mean disabled people can’t vote, that they can’t go where they want to. It’s a mess. Free Brittany is a perfect example of that happening.

If you’re just showing up for disabled people, making sure that the spaces that you’re having have accessibility in mind if you’re planning anything, making sure you’re having disabled people discussed and their needs discussed from the ground floor, not as an add-on later. That’s always going to be very obvious to us and very difficult to implement later. Making sure that in your neighborhood your sidewalks are not cracked, that people are not blocking ramps and exits and things like that. Little things like that can make a huge difference for a disabled person. Those are some of the ways you can show up in that way.

Miya Cain: Thank you. The last audience question I will ask is oftentimes a person’s unwillingness to be corrected can lead to further harm. How can we combat this while still protecting ourselves from the burnout that comes from constantly being in a state of educating others on our life experiences and needs?

Imani Barbarin: You don’t have to educate anybody. You don’t. I mean like I do because it’s my job but again, it’s up to you to set your own boundaries, right? If you feel like somebody’s just—there’s a different between somebody not getting it and doing it out of malice and out of complete misunderstanding, and it’s very difficult to differentiate between the two, and then there’s also that whole sealioning thing that people do on social media where they’re like I actually care, explain it to me. They’re just wasting your time but it’s actually you have to get to know your own boundaries. If it’s too much for you, be like I’m out. That’s OK. There are books. There are websites. There are advocates. There are things in the media you can point them to. I doesn’t always have to be you.

Set those boundaries and set a standard, be like, listen, if you cannot respect me in the way I want to be respected as I’m asking you to respect me, then we can end this conversation here. I’m good.

Miya Cain: It’s not your job. It’s not your job.

Imani Barbarin: It’s not your job. I have this thing too personally where I have this idea around educating people. I’m not going to argue with people online. I know it seems like I do but I’m not going to argue with people online. It’s people that’s close to me that I want to get it so I spend more of an investment on my time with the people who are close to me because they are who matters to me. But if you feel like that’s not an investment you want to make, that’s OK, you don’t have to make it.

Miya Cain: All right, well, as we’re wrapping up, Imani, I’m wondering what is one thing that you hope people take away from your work?

Imani Barbarin: I hope people take away the importance of believing disabled people about our own experiences. I hope that people validate the voices of other disabled people including the disabled people in their own lives. That was two things. One more, and I hope that people are kinder to themselves around their own disabilities because you deserve it too.

Miya Cain: Thank you so much. This was such a beautiful and enriching conversation. How can we continue to learn from you and follow your work? I’m following you but other people might want to follow you as well.

Imani Barbarin: I’m @crutches_and_spice on TikTok and Instagram, and I’m @imanibarbarin on Twitter. I’m also on Mastodon and Bluesky. There’s too much going on. You can literally find me anywhere. My blog is at crutchesandspice.com, and my podcast is also on crutchesandspice and I’m working on content for that now.

Miya Cain: Awesome. Thank you so much. It was a pleasure talking to you, and I know I’m seeing all of the chats, all of the thank yous, and everyone just sharing that you’re such a light and this has just been such an amazing conversation so thank you for sharing your wisdom and your experience with us.

Imani Barbarin: Thank you all for having me. Thank you so much.

(Outro) And this closes out this episode of the Collective Impact Forum podcast. If you are interested in learning more about what was discussed, you can find links to resources in the footnotes for this episode, including a full transcript of this keynote discussion.

We would like to acknowledge that this episode was produced and edited on the unceded, traditional lands of the Coast Salish people, including the Duwamish, Suquamish, Stillaguamish, and Muckleshoot tribes. We honor with gratitude the land itself and the past, present, and futures of these tribes.

The Intro music for this episode was composed by Rafael Krux and our outro music is composed by Kevin Macleod.

In Forum news, we’re excited to share that registration is open for our fall workshop series titled “Essentials for Collective Impact.” This is a new series of online workshops focused on building practical knowledge and understanding around four key areas that support collective impact efforts. These focus areas are collaborative planning and engagement, facilitating results-focused meetings, strengthening trust and relationships, and avoiding common challenges that stymie the work of collectives. If you would like join us, you can register for the full series of workshops or just the topics that interest you most. You can find out more about this online workshop series in the events section of our website at collectiveimpactforum.org.

This is Tracy Timmons-Gray, Associate Director here at the Collective Impact Forum, and your podcast producer. I want to say thank you so much for listening, and we look forward to connecting with you more in our next episode. Until next time, we hope you are safe and well.

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