In this episode, we’re sharing a conversation from the 2021 Collective Impact Action Summit that was held this past spring. During this session, we talk with disability justice advocate Imani Barbarin (Crutches and Spice) about the various narratives that affect disabled folk in the U.S. and what measures we can take to better support disabled folks on our teams and in our communities.
Please find a transcript of this discussion lower down this page.
Resources and Footnotes
Resource: Disability & Philanthropy Forum
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.
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(Intro by Tracy Timmons-Gray): 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 and online community 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 conversation from the 2021 Collective Impact Action Summit that was held this past spring. During this session, I got the chance to talk with disability justice advocate Imani Barbarin about the various narratives that affect disabled folk in the U.S. and what measures can we take to better support disabled members of our communities. As I also identify as a person with a disability, this is a topic close to my heart.
And if you’re wondering why a podcast that focuses on supporting cross-sector collaboration is talking about disability, we just want to remind listenerss that in the U.S. alone, it’s estimated that at least 20% of the population identifies as having a visible or invisible disability, and since all collaboration involves working with people, there’s a high chance that your work will affect disabled members of your community. The more we know about the narratives that affect disabled folk, especially about the narratives that are continuing to cause harm, the better we’ll be able to serve the wide variety of people in our communities.
Tracy Timmons-Gray: I am Tracy Timmons-Gray. I’m here at the Collective Impact Forum so the host organization doing the summit. Also, you may know my work from doing the back end of all the plenaries so if there’s anything that goes wrong during the plenaries maybe that was me.
I also identify as a person with a disability. I was born with congenital glaucoma and I am low vision so I’m very excited about this talk today. I’m very honored to be in discussion with Imani Barbarin. Just for a quick rundown on what’s happening today, I’ll introduce Imani and then provide a very brief framing on our discussion around disability and narrative change. Then we have around five questions that we’ll be going over in kind of a fireside chat format. Feel free to imagine your preferred fireside setting. That’s kind of the rundown for today so let’s get started.
Imani Barbarin is a disability rights and inclusion activist and speaker who uses her voice and social media platform 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. Imani is from Philadelphia and holds a master’s in global communications from the American University of Paris. Her published work includes those in Forbes, Rewire, Healthline, Bitch Media, 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. Thank you so much, Imani, for joining us today.
Imani Barbarin: Hello. How are you?
Tracy Timmons-Gray: So good. For a brief framing for the discussion around disability, change, and narrative, the topic of disability and narrative change is both very broad and very complex. On top of that, the disability community is also very diverse. There’s a wide range of disabilities both visible and invisible, and you also have many folks who are at the intersection of disability and other formative experiences including race, sexuality, gender, and class. There is no one disabled experience. Since we only have a short time together, we are going to center the discussion on just a couple topics. Our hope is that this discussion today will help shine a light on areas within disability justice and accessibility and narrative change that you would want to take it to the next step and deepen your own understanding.
With that, Imani, how did you get into doing disability justice and narrative change work?
Imani Barbarin: I remember in about 2014 I felt like I was in the wind and at a loss for what to do next. It was really after I graduated college. I really wanted to talk about being disabled and being Black because I grew up with very rare instances of representation before me. I wanted to write from that perspective. The more I started writing about my disability the less my mom read it, so I had to like collaborate with other disabled people because I wanted somebody to read my work.
Kind of in that collaborative sprit, I started interviewing other disabled people and talking about political change and systems change and then engaging with different, like other advocates, just to make sure that I was listening to the community and not just speaking based off of my own individual experiences but understood how the community operates as a whole.
From there, I kind of just—it’s kind of like a rabbit hole. You just kind of go down every single path and you learn new things about your own life based off of the lens of how ableism is structured in society. I had grown up with this idea that—I was taught that if I tried hard enough, I could do anything and don’t let anybody’s biases stop you. But biases are built into a system so that would be me blaming myself for things that I largely had no control over as a child. Kind of unpacking a lot of that early on led me to speaking out about it and ever since then people are calling me an activist.
Tracy Timmons-Gray: I know how much I appreciate your work and for those that haven’t followed Imani’s work before please check out her channel on TikTok and Twitter. She had amazing videos. You’ve done so much work, really great work around narrative change, around shifting the narrative around disability. When you’re thinking about the United States, for you, what do you—and this is to share out to audience members who may or may not be familiar with these narratives—what do you think are the most dominant narratives around disability in the U.S. right now?
Imani Barbarin: I think one of the things that we have failed as a society to understand is nuance. We think of disability and ability as a binary. A lot more people are disabled than they think they are and because they see disability as less than or other, they don’t have the willingness to look inward and say I have issues with A, B, or C, and I need help for them. Rather, we overwork ourselves and we basically gaslight ourselves because we don’t want to be labeled as disabled, and with good reason, because disabled people are seen as disposable. We’re seen as not giving to the economy, not being productive members of society.
Because of that, we have a history of tying disability to racial minorities through things like eugenics and race science. So it’s all interconnected. It’s not one system over the other. So when we talk about ableism, we’re talking about a whole slew of systems that work together to oppress tons of people.
One example I can think of right now is the voting. The legislation around voting that is looking to suppress people’s access to the vote, that will disproportionately hurt disabled people because disproportionately, Black and Brown people become disabled.
When we think about things through an intersectional lens, we’re really addressing the ways in which ableism is weaponized throughout society. If more people understood the ableism they have towards themselves, the more we’re likely to change systems as a whole, because I can’t talk to somebody about systems change and ableism if they are not willing to do the work themselves to some extent.
I hope as a society we move away from that binary and understand how we contribute to ableism and how we are manipulated by it as well.
Tracy Timmons-Gray: Spot on. Through all your work around promoting a shift in narrative change around disability, for you, what have been some of the most challenging things or even illuminating things during your work?
Imani Barbarin: (Sighs)
Tracy Timmons-Gray: Yeah, I hear that sigh.
Imani Barbarin: I think one of the hardest things is parents and nondisabled people are the hardest. First of all, I need them out of my way. A lot of them will butt heads with me because I don’t cater anything to them. What I do is I try to inform them in such a way that the disabled people in their life are safer and feel like they’re being heard or at least somebody’s telling their family members the truth.
Nondisabled people think that disability is all about them because we have as a society decided that disabled people can’t do anything without nondisabled people. If we need their cosign and their permission to innovate change, but the reality is because of our oppression that they benefit from that we are as creative as we are because we have to work around them.
Everything about disability the nondisabled people have been told is a lie so they don’t have the same reality that we do. So they want to talk over us because everything about disability that we teach nondisabled people is about making them feel better if they were to become disabled and not really catering to disabled people to save our lives, literally save our lives.
Rather, they would have us serve as a litmus test for how much worse their life can be than undo any of the systems that they benefit from even though the only thing that separates me from a nondisabled person is luck and time. Every single barrier, every single stereotype that nondisabled people reinforce when they’re nondisabled will exist when they’re disabled.
Like I said before, it’s not a binary. So you cannot think of these things as things that don’t affect you. If you could tell me what will happen to you tomorrow, I will tell you ableism does not affect you. But you can’t. So work on it now.
Nondisabled people will fight me on that all because I use the word disabled. That’s where their brain shuts down because you’re like, that’s where you draw the line? I’m not othering myself because of my disability and because I talk about my disability. You’re othering me because you cannot talk about my disability.
So nondisabled people are usually the biggest hurdle I have when it comes to talking about disability because they want to police the language I use about it to make themselves feel better. What does that do?
Tracy Timmons-Gray: You’re right. You’re absolutely right. To build off your point too, I think you brought this up too in your videos around disability as a group of marginalized folk where anyone can enter at any moment. So it’s so interesting how much folks who are abled basically create systems of oppression when that’s something that any one step or any moment they will literally fall into that same place and that same point of oppression.
Imani Barbarin: Yeah, and the amount of people I come across in my work who were previously nondisabled who have to do a lot of devastatingly difficult internal work to undo that because now all those beliefs are now internalized because they are disabled. It’s alarming. It’s really alarming because people are not prepared at all, and they fight so much the label of disability that they can’t even get what they need because they can’t even say the word.
Most agencies will not serve you if you do not disclose a disability to them. If you can’t say the word disability, they can’t serve you. If you cannot give them a diagnosis, they legally cannot serve you in a lot of cases so get used to saying the word.
I feel like it’s such a ridiculous barrier to talking with them. It’s like it’s a word. You’re the one that made it up, just say it.
I see a lot of parents really kind of fighting older disabled people about just the word. We’re trying to tell them, no, you need this word because it leads to services, it leads to accommodations, it leads to extra time on tests. It leads to their own internal understanding, and because their child is an extension of themselves as nondisabled people, they don’t want disability attached to their extension of themselves which is their child. They don’t want to have to deal with the fact that they have more privilege over their child now because they do not exist in the same realm or same world as disability does. It is harmful.
Tracy Timmons-Gray: It is harmful. I’m going to go off script a little, we’re going to build off a little bit what you shared too. I think parents of a disabled kids—I love my mom, she’s amazing. This is such a challenging area for folks because they oftentimes in that moment when their child is born or develops a disability, they suddenly realize they have to become an advocate, and they can suddenly take a very strong role in that advocacy but not understanding too how they may take over everything, and even take over the whole realm of discussion and completely block out other folks with disabilities and adults especially with disabilities.
It’s a very challenging emotional area for folks who always want to think about the best for their children but don’t always think about the harm they may be doing at the same time for both their children and for other disabled folks.
Imani Barbarin: Yes. I feel like parents really have to listen to older disabled people because they want the best but they’re doing it with the worst, you know? Because your reality of disability is not what your child is experiencing, and no matter how many children or how many family members in your life that are disabled, you’re not disabled. You cannot speak for that person even if they’re nonspeaking. Everything you do is an approximation of what they need. So you really need to listen to people who have either been there to your child themselves.
Tracy Timmons-Gray: Spot on. So we’ll get to a simple topic which is COVID, really short and simple. I think for many of us especially in the disabled community, COVID has maybe put a stark spotlight on things that we already really understood or felt and experienced but now more people are experiencing the same thing.
But from your perspective and your work, what has COVID really unearthed or revealed for you?
Imani Barbarin: That all the stereotypes about disability—how do I put this? The stereotypes about disability do not save disabled people.
Growing up I dealt with a lot of this burden placed on me to be an inspiration, to be a performance for disability, and none of that matters because the moment disabled people were out of sight because we had this quarantine and that we could not help with people’s clout, and that people couldn’t help us out of, for their social media, then they were like, “Well, let ’em die.” That was literally the thought process, and everything that disabled people have been asking for all of a sudden became available.
The disability community was the best equipped to transition nondisabled people into remote working and remote advocacy and remote events, disabled people. But disabled people account for about a third of all job losses in 2020. We were the first fired, and yet we were the ones who were most equipped for this moment in time.
And that really boils down to the fact that we as a society do not trust disabled people to lead, and that comes from this idea of capacity. No matter what I’m talking about, I always bring up capacity because nondisabled people have this idea that because a person has a disability, they do not have the capacity to do anything that affects their life, and they don’t want disabled people directing their life which is why so much ableism comes up in political campaigns. That’s another story.
But when it comes to leading, disabled people are the blueprint for accessibility. We’re the blueprint for remote working. All of these services that you’re using right now, disabled people begged for, begged. All this captioning, disabled people begged for. We’ve asked for events to be remote. We’ve asked for book signings to be remote. We’ve asked for speaking engagements to be remote. People would not give us the time of day but the minute nondisabled people needed it, it was available within a heartbeat.
So never underestimate a disabled person’s capacity to lead or speak for themselves or advocate for you and society at large. And also, do not underestimate a disabled person’s capacity for harm too because that’s the way that we gaslight people within the community.
So understand what your viewpoint is on capacity and unravel it because we have let society be led by people who want to do harm all under the guise of doing it for the greater good when disabled people had the solution the entire time.
Tracy Timmons-Gray: It’s true, and right now we’re starting to get into the tension as more and more folks get vaccinated, which is also a huge equity issue for disabled folks by the way for listeners, is this want to return to quote-unquote normalcy of before so all these amazing accessible measures that we are enacting, people want to get rid of. They’re like, “I have Zoom fatigue,” and it’s so fascinating to have folks not think about what does a hybrid world looks like that would address so many accessible measures that would keep disabled people at the table now that we know how successful these things can be. I don’t know if you have any thoughts about that.
Imani Barbarin: I mean it’s one of those things where you watch people complain about stuff that makes your life easier, and you’re like, “Ehhh… this is…”—it gets really frustrating because as soon as nondisabled people don’t want it, it’s not going to be available.
Our greatest foe in these aftertimes is going to be public memory, and people remembering what it’s like to be isolated from your communities, from your friends and family. Disabled people want access to things even if they’re frivolous, even if they’re just fun so the idea that we are going to shut off access because COVID is quote-unquote over which it’s probably never going to be but because COVID is over, that’s ridiculous to me.
It’s also so demeaning to disabled people to watch people debate whether or not we should be present for things. What gives you the right, you know? Disabled people have lived—we survived a pandemic but we can’t survive nondisabled people being finicky about our access to things? No.
Tracy Timmons-Gray: That’s a great point. My hope is for the listeners, and this will lead into the next question too, is if we can’t wait to get everyone back in the office, and you’re setting up a hard line of no, everyone’s got to be back in the office, no more of this remote, maybe think about that and think about how much a hybrid model or an accessible model might actually make your—allow all of your staff including your staff with disabilities to really flourish, and what does it mean to have that kind of more—I don’t know what the right word is—compassionate accessible way of being.
Imani Barbarin: Also just think about the fact that about—it’s estimated that a third of people diagnosed with COVID whether they were symptomatic or not will have a disability so if you plan on rehiring people or hiring different people, that’s like you’re investing more money in hiring new people than accommodating the people that were with you from the beginning.
Tracy Timmons-Gray: You’ve brought this up, a really powerful point in your videos before around COVID which was not just- to really center- This isn’t just a mass “death event.” You mentioned this is a mass disabling event, and how many folks are entering or have entered the disabled community just this year because of COVID, and how their life is, and how these inaccessible measures are affecting them.
Imani Barbarin: Yeah, it’s not negotiable. If we keep thinking it’s optional, it’s not negotiable. It has to be done. Like I said before, luck and time. The only difference between me and you is luck and time. The people who are now disabled because of COVID are the people who may have been reinforcing these barriers beforehand. Likely not but could have been. So what is the world that they’re entering into? What do disability services look like now? Those are questions they’re going to have to ask themselves because those are the services they need.
Tracy Timmons-Gray: To cap off and to see if you have time for a Q&A is around- folks are in these chats and they’re always like, “What can I do?” So one question to think about, and I’m going to think of this for both the abled community—we’re going to the binary—the abled community and the disabled community because I know the disabled community is so diverse itself, it’s easy to address one part of the disabled community and completely muck up another part. So what are the things that you want people to take away from this session and thinking about the narrative and disability for all these different audiences?
Imani Barbarin: For nondisabled I really hope that you evaluate your own internal ableism because your body is not a constant. It fluctuates, and disability may touch your life at any point. So understand that and also undo this notion of capacity and who’s able to lead, who’s able to contribute, who’s able to harm. Disabled people are people. We come with our own personalities so believing somebody is one way just because they have a disability does not make any sense.
For disabled people I would hope that you find comfort in the disability community because there is no stronger coalition of people I’ve ever met than disabled people. There’s no more innovative group of people that I’ve met than disabled people because our innovation, our creativity, our community is how we survive.
So I really hope that you reach out to other disabled people. I really hope that you engage in conversations with other disabled people because once I found the disability community and once I was able to talk to others, things were kind of jettisoned into perspective for me, and I could kind of see that I wasn’t alone, and I wasn’t making stuff up, and I wasn’t losing it in my own head because I couldn’t figure out why I was experiencing what I was experiencing, and understand that we are not a monolith either. We listen to each other, we have to. If we’re going to do the best we can by each other, we have to listen to each other.
Tracy Timmons-Gray: Very powerful. We have time for one or two questions and so do folks want to raise your hands, and we can invite you to come off mute and share your question?
Imani Barbarin: I do have one comment that I saw that Alicia wrote about how she doesn’t disclose her disability, and that makes sense for Black women. I’m very careful to say whenever I’m in a room full of people that specifically for Black people, especially Black women, there is no—I never force a Black woman to disclose a disability if they don’t want to. It’s a further marginalization that quite literally is life or death in a lot of ways, can disconnect them from their community, can disconnect Black women from society in a lot of ways so I always try to be careful when talking with Black women about disability because I want them to know that claiming disability is about claiming community and making sure that you have the resources you need but also there’s a stigma that goes along with it that cannot be detangled from being a Black woman with a disability. So I agree with Alicia and it makes complete sense to me.
Tracy Timmons-Gray: Great point. Did someone…
Session Guest: The host asked me to unmute so I think that’s my call to jump in. First of all, Imani, I am just floored and inspired, and you’re beautiful, and thank you, thank you for your messages here today.
This question of intersectionality is one that I’m really trying to understand, how I can be a voice in our initiative, in my work as a White woman without furthering the racist stereotype of people of color being less able. And so at times when I’ve tried to advocate for disability pieces, I’m getting a lot of pushback from ableist people of color who are not wanting to have that conversation or not wanting to consider disability at all because they feel like it furthers that stereotype so any thoughts on how we can have these conversations in our collective impact work?
Imani Barbarin: Yes. This is a really timely question because as we talk about vaccines, we talk a lot about vaccine hesitancy among communities of color, and the very first thing you have to do is learn your history because if you’re coming at people of color without context for why they feel the way they feel, you’ll be butting heads with them the entire time.
There are reasons why Black and Brown people react to disability the way that they do. In the early I want to say 1900s, some century long ago where they had buttons, but there was actually a science called race science in which they tried to diagnose otherness as a disability by tying race to disability. So if you don’t know that history, you’re not equipped to talk to them first of all.
Second of all, what I always tell allies or White people is that you don’t have to be the center of a space to create space. A lot of times when allies try to facilitate things, it’s about making themselves front and center. So giving that ability to somebody who’s willing to talk about disability in that group, making sure that they have the tools that they need to talk to other people is probably the best way to go about it because they’re not going to talk to you because you’re an embodiment of why they don’t want to talk about disability because they’re afraid. I don’t know if you’re in HR or whatever but they’re afraid of being seen as less than by you and losing the resources that they need to survive or being stigmatized and then losing the resources they need to survive. So understand the history, make space, and then back away from it, and facilitate as needed so that people have the resources they need to continue the conversation.
Tracy Timmons-Gray: We are actually at time and someone just asked a very challenging question that I know will not be answered quickly so I apologize for that but I do want to ask one last question for Imani is how can people follow more of your work? Where can they find you?
Imani Barbarin: I’m literally everywhere. I’m on TikTok, Twitter, Instagram. My website is crutchesandspice.com. My name is Imani Barbarin so you can look me up, and I should pop up. I look good in the photo too. I’m like this.
Tracy Timmons-Gray: Yeah, you do.
Imani Barbarin: But you can find me literally anywhere. I do a lot of writing and have been publishing and stuff here and there over the last year but it’s been really difficult with COVID. But you can follow my work. My email is Imani.Barbarin@gmail.com so I’m pretty sure that you’ll be able to catch me literally anywhere.
Tracy Timmons-Gray: Is it OK if we mention your future project that you talked about earlier?
Imani Barbarin: Yes, I’m writing a book. It’s called If I Were You, I Would Kill Myself and Other Disabled Compliments. I have to be sarcastic about it, otherwise I feel like, you know, I feel like I just like making them uncomfortable.
Tracy Timmons-Gray: For listeners, those are actually something that people, disabled people actually really do hear. People actually do say that.
Imani Barbarin: We’re like, you are- “it’s so nice that you’re outside,” as opposed to what, yeah.
Tracy Timmons-Gray: I can’t wait to read your book, and also listen to it. I’m just so appreciative of your amazing work, your fantastic videos. Everyone please go check Imani out on Twitter and TikTok. Her work is amazing, and really can shift the narrative so, Imani, thank you so much. Everyone, thank you so much for listening. Bakhtawer and Christian have been working on the back end, thank you so much. We will see you next time.
Imani Barbarin: Thank you. Have a good one.
(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 of this podcast.
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.
Our big news this month is that we just opened registration for our upcoming Champions for Change 2021 online workshop. Champions for Change is designed specifically for those in the early stages of their collective impact work. This year’s online workshop will be held over three weeks, from Sept. 21 through Oct 5, and will feature a mix of weekly online sessions and virtual office hours with faculty. And the big plus for online workshops is that all the sessions are recorded, so you won’t have to worry about missing a session. You’ll have access to them all. Check out more about Champions and register for this year’s workshop at collectiveimpactforum.org. And if you’re interested, we recommend registering before the early-bird rates ends this August.
This is Tracy Timmons-Gray, Associate Director here at the Collective Impact Forum, and your podcast host. 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.