I think that when a disabled person has the camera, When a disabled person has the narrative, it's far more powerful and palpable Because if you're going to judge our quality of life, know it fully.

Hey, everybody, I'm Marissa Pina.

I work at PBS, and I'm so excited to welcome you to our very first video podcast.

Today, we're going to talk a little bit about medical assistance in dying.

And the disability community.

who gets to make the decision about a person's quality of life?

And if it's worth living.

A conversation that's been spurred by the Sundance Award winning film Life After .

The filmmaker, Reid Davenport, focuses on our northern neighbors Canada, where Medical Assistance In Dying, otherwise known as MAID, is legal.

Canada, has expanded the scope of eligibility from people for whom natural death was reasonably foreseeable, to including individuals with conditions where natural death isn’t imminent, including some disabilities.

However, there are people in the disability community who have said that they're interested in this program because the cost of long term care is too much, or what they're being offered just isn't enough.

the film made me contemplate if the system for assisted dying has developed into one where making life and death decisions is based on finances or pressure from others over compassion.

this is a nuanced conversation and one we wanted to facilitate with members of the community.

Joining us for that conversation is Imani Barbarin, a writer, speaker, and prominent disability rights and inclusion activist.

And if you're chronically online like I am, you probably know her as Crutches And Spice.

Cole is most known for his work on YouTube and online, sharing his life with his wife, Charisma.

They started Roll with Cole and Charisma.

After an accident in 2011 left Cole paralyzed from the chest down with the goal of educating and showcasing life as an interabled couple.

And last but certainly not least, we're joined by Anna Sarol.

Anna is a model, content creator, and disability advocate.

She uses her platform to raise awareness about the disabled community and promote inclusion.

I'm so excited to have you all here.

Thank you so much for joining us, and let's get started.

Who should be helping to guide these conversations around ethics and and trauma and these medical spaces for disabled people?

I mean, I think it should be disabled people ourselves, particularly disabled people of color, who are at the access of both racism and ableism.

I think that when we're talking about systems playing, using our bodies as playgrounds, that's kind of ground zero.

And so that's who I'd like to see leading a lot of these conversations around inclusion of disabled people.

But whether or not there's a willpower to make that happen is another story.

Yeah.

And I'm worried that with the wrong people, that's where the slippery slope gets slipperier, you know.

Because there's definitely a... there is a cohort of the disability community that's dead set on making sure that disabled people are treated, quote unquote, equally and in an, an unequal sense, trying to prove value to non-disabled people when in reality, you know, they could use the same accessibility we could use.

And we are a very large and diverse community and there's so many different viewpoints I, like Cole said, I do worry the wrong people will have the mic.

I don't know who, which activist, said this, but he said it best.

He said, “Nothing about us without us.” And it's something that's so simple that you would think that people are - I mean, like that, it's a no brainer.

But we don't see it applied.

And that's the unfortunate reality.

I think it's so important to hear from people who are part of this film.

So let's take a look at a clip showcasing one person's story, whose finances impacted all of their decision making around their health.

That's so devastating.

I mean... I hate how it seems like for disabled people, it's always the choice between two lesser evils.

Why does that need to be the case?

Yeah, and I think his fear of long term care is also very founded as well.

every Western society is never really fully funded the balance between independence and interdependence in the home and community based services versus institutionalization and institutions are not great places for, for, particularly for a lot of disabled people, disabled adults.

So, I completely understand his logic on that, but it's just devastating.

He has to make that choice based off of money.

That's hard.

I mean, I we all know what it's like to pay for this life.

And being disabled is incredibly expensive and not financially feasible.

And to repeat what he said, that he didn't want to die, but this was, in his mind, the only choice.

And again, that's a harsh reality that we face as people see our lives and they sometimes think surface level in the sense of like, oh, all you have to do is pay for a chair and then it stops at that, or a mobility device, and it stops at that.

When it's so much more complex than grabbing a mobility device from a shelf at Walmart.

He's just talking about care.

I mean, I've written an article years ago, and the research showed the disabled people spend about 30% more of our income for the same quality of life as non-disabled people.

He's not just thinking about just care.

It's every little thing that needs to be accessible in his life so he could survive.

think it's a, you know, a glaring inditement on our health care systems that it's a better choice, it's easier to not live in the system like you'd really literally rather not live in the system that we currently have in place.

How is that not like that should be sirens to people, you know.

It should be so obvious.

Wait a minute.

People.

People would rather die.

Then deal with our system.

We're really giving these people such little support that... I don't know...it... That just blows my mind.

And also, people need to realize this is them.

This is not just disabled people talking about our quality of life.

You will inherit this system should you become disabled.

And there's nothing stopping you, right?

Do you want to choose between being locked away and being able to live or dying?

That's not a choice that anybody should have to make.

it seems to be about disability erasure and erasure of identities that exist.

That able bodied people would rather not see or think about disability.

how has this feeling impacted you?

It's so frustrating.

I don't know, it's very, it's, it's mind boggling.

To be a part of such a large population of people like we represent 27.2% of the U.S.

population.

And yet every single time you bring it up, even with people who have good intentions, it's a, “Oh, we don't claim that.” Oh, we don't see you any differently.

Oh, well, it's, it's you're complaining.

You, you know, you just rise above.

There's all these excuses to erase disability and the ways in which our society's not designed for us.

But there are very few concepts and ideas coming from these communities to include us.

And that's the most frustrating part, is that there's this almost, I want to say, almost belligerent.

It's the inclusivity that we have in our society where everybody is treated exactly the same when that's not what disabled people need.

We do need support.

We do need intra-community.

We do need, power, political power.

It's not just about us looking nice, looking like lawn ornaments.

to Imani’s point, it's still hard to really get through to people because like, I see so many comments on our videos like, oh, I just love y'all's content so much.

Like,I don't even see Cole’s wheelchair anymore.

And I'm like, well, that's that's not really the point.

You know, you can that's a huge part of who I am, my identity.

I'm like not ashamed of it or something.

So for someone to just be like, I don't even see that as if it's it's like a great thing.

It's like, well, then you don't really see me.

That's, that's part of me then.

And I want you to see that, and I want you to have the awareness from watching my videos of me doing things in my wheelchair, talking about issues, you know, around disability.

so, Judy Heumann has this quote and I'm going to butcher it.

But essentially the sentiment was people say we're invited to the table, but no one ever asks if that table is accessible.

And I think that just encompasses everything that we have all mentioned.

Yea, and I think it has a lot to do with the infantilization of disabled people, they don't really see us as political actors or community members.

They kind of see us as... for lack of a better word, pets.

like, oh, we can get to those needs a little bit later, keep them fed, keep them housed, keep them healthy, and then they’ll be happy and do whatever they want.

But we want full purchase of our full autonomy.

I don't care if I can make it into a party as much as I can, have equitable rights to be paid equally, to get to my grocery store, in a, in a timely manner, to be able to afford my doctor's appointments, and my medication.

Like there's all this emphasis on this, like very tertiary surface level inclusion rather than the actual political purchase we demand as a community.

Marissa, you said that you’re able bodied.

But, are your glasses prescription?

They are.

Right, so you have a disability, your disability is just accommodated.

So, your ability to make decisions about your quality of your life are completely different than ours.

I think that you guys are bringing out really great points that are something I kind of want to dive a little deeper into, in particular, while we talk about, the medical system and access to care.

Was there ever an event in your life that led to your first realization that maybe the system is not as equitable as you might have thought?

Being born, you know, I, you know, I was born with my disability.

And so I've been in advocacy spaces, in disability spaces my whole life.

Even from my childhood, I went to a school that was designed for disabled children, to prepare us for the world.

And, you know, I try to tell people that you know, for a lot of people, their home is their safe space.

It’s the place where they can relax and everything.

But simply just waking up in the morning is my first realization that my world is not built for me.

You know, I'm lucky enough to try to make my space as accessible as possible, but even the height of a bed or the height of a mattress, like every little decision I have to make, is based off of standards and policies.

So, I acquired my disability, when I was 14.

And, as I reflected back on specifically attending or going to hospitals, one of the things that seems like an example I'll give that might seem insignificant is how inaccessible body scales are.

And again, this seems seemingly insignificant.

But when you consider that body scales require for a patient to stand on it, you recognize that being able to weigh yourself is a privilege.

In that capacity where you know it, it became inaccessible to me and we recognize that, That’s a, a piece of data that kind of just disappears.

I mean, oftentimes I'll go to a hospital and go for a follow up checkup, and doctors will come to me asking, what's, what's your weight?

And I'm just supposed to make the assumption of what my current weight is.

Things like that needs to change.

And when it comes to physical barriers that exist for disabled people.

And I wanted to add too, that that adds danger to your life, because if you ever have to go under the knife or you have to have surgery, they need to know your exact weight to dose you properly.

Right.

And so you're in a setting that is quite literally designed for disabled people, medical settings that are not designed for you.

In my experience, I think graduating college and realizing that for me to start earning money, it's going to be a long, long uphill battle.

Just knowing that all of the benefits that I was relying on, that my family was relying on, Were just, were slowly going to dwindle away.

The more I started to earn, it made me not want to go earn, you know?

And even when I, you know, made that choice to to go earn it was very convoluted and a very murky system.

And I had to have an expert hold my hand through the process.

And I feel like I'm a pretty bright guy.

You know, it's just so difficult the way that it's set up right now.

And then to make matters worse, once I, you know, found Charisma and I wanted to get married, I knew that, that was going to be the end of the road for benefits right there, because there isn't marriage equality.

And that, that's not equitable.

That is not an equitable system at all.

Cole, talking about community and how inside influences impact the lives of those with disabilities reminds me of a clip from this film.

So let's take a look at a clip where our filmmaker, Reid Davenport, explores the interest form for MAID.

I can relate to what he mentioned of, I don't know where I would be.

I think that they have shielded me from so much and have also empowered me to be able to determine the life that I'm going to live, and not let societal views and assumptions and stereotypes creep in.

when people are thrust into a new life of disability like that quickly with a spinal cord injury.

There are... people who don't have the community and you can see the difference in outcome.

It's very, very apparent.

In fact, I moved into a gentleman's room at my rehab hospital who passed away not shortly after that because he was trying to get onto a public bus by himself.

He didn't have a caregiver with him, and he got a mucus plug in his ventilator, and he died.

And like, there's there's no way that that ever would have happened to me because I always had people around.

I always had caregivers.

I never had to get on the, the public, transportation.

And that's, that has always stuck with me because it made it very apparent how privileged I am, and how much community and support matters in people's health outcomes.

So I wanted to ask all three of you what it meant to you to see a film from Reid, who is a part of this community.

I think that when a disabled person has the camera, when a disabled person has the narrative, it's far more powerful and palpable to understand our experiences, to understand who we are, rather than making assumptions based off of ideas that we didn't even have a hand in creating.

And so I really hope people understand the importance of disabled storytellers and disabled narratives and put more, resources and time into making sure that we have the capacity to tell our own stories.

Because if you're going to judge our quality of life, know it fully On a more like, just basic level, the little moments where Reid's rolling around town.

You know, he's showing his wheels, going over the curbs and sidewalks and stuff like that.

It makes it so just, like, relatable and, and makes you feel like, okay, I'm really watching one of my people out there trying to tell me about this and inform me about this, and that gives me a lot of like, trust in the film.

So those little shots meant something to me.

I was curious to ask all of you, What was something that you learned from some of the participants?

And how has that shifted maybe you're thinking towards certain things like disability justice or MAID.

I think Reid really kind of encouraged people to understand that disability is not a monolith, and that we're all looking at this from different perspectives, both through a bodily autonomy lens as well as through a systemic oppression lens.

And I think a lot of people don't want to look at the fact that disabled people are systemically oppressed.

And it's, it bears itself out in every single interaction we have, every single barrier we face.

And I think that that's what the film really kind of highlights very, very well is that we are all just trying to make it work.

Realistically, we are just really trying to make it work and we don't have the tools and a lot of ways that have been promised to us to survive our own lives.

And I think that that's kind of the hardest thing to contend with is the, the core question of the, of the film, which is who gets to make that choice when quality of life is out of our hands to begin with?

That’s so good I think the only thing that I would like to add is that one thing that I really appreciated about the film was how it offers an accurate and humanizing representation of an often overlooked population, and I think they do a good job at bridging that gap of what society thinks disability is and what it actually looks like.

And I mean, I it's one thing that as a viewer, I loved seeing.

And made that gap abundantly clear.

Right.

And also, it's really interesting to what non-disabled people will engage with.

And like we've been talking about social media, for much of our, our lives, disability representation has not been in our hands.

Much of our population's existence.

And so they're making very off assumptions about us, based off of narratives that are not even in our hands to begin with either.

Is not just that our autonomy isn't in our hands?

Is that the media that they are specifically seeking out on disability also isn’t in our hands either.

And so like things like this are really crucial so that people understand who we are and what we're about.

I'd love to hear about how you first got involved in the topic of disability justice.

Sure.

So around 2014, I had just graduated college, and it was really difficult for me to find a job.

Every single time I disclose I had a disability could not find one.

And then as soon as I stopped disclosing, I started getting offers.

And, while a lot of people think that it's, like, fake because, “it's supposed to be equal opportunity.” We all know that's not necessarily true.

But it it really kind of spurred me to start my blog, Crutches and Spice .

com, because there there's no guidance on being an adult with a disability.

There's also very little representation of Black people with disabilities that also claim their disabilities.

And so I wanted to kind of just share who I am and share my experiences with the world.

And I learned very quickly that I couldn't do this in isolation.

I had to form and build community with other disabled people.

When Charisma and I are posting our videos.

And as time progressed, we started seeing more and more people sharing from the hospital where they were rehabbing because they were just injured.

And they're like, okay, seeing all of your videos, I have an idea now what my life could look like.

And that makes me feel, feel really good.

I find that really rewarding.

And I, and I want to, I want to be a part of that and, and, and kind of reshape people's perspectives, especially when they're at the lowest of lows.

when I broke my neck.

I did ask my brother to kill me.

I was like, I didn't really see the point.

You know, I didn't even know my disability at the time.

I hadn't even fully processed.

And my mind immediately was like, I don't want to be disabled.

And that moment really hung with me a long, long time.

Yeah.

And especially in your situation too, like you said, you didn't have a lot of exposure to disability before your injury.

I wonder what your thought process might be if you did have a lot more exposure before your injury, right.

If you could see what it looked like to live a life with, with a disability before you got injured, if that would be your automatic, you know, desire, you know what I mean?

I think similar to what Cole said, We know what it's like to transition from non-disabled person to a disabled person, and that transition was really hard.

And I think if I had support in the way of in the form of representation, I think that transition would look a lot easier.

And at the time when I got injured in 2014, there wasn't a lot of videos out there that translate to what I was experiencing in those early injury days and how to navigate this life that I'm very unfamiliar with.

And so that led me to wanting to pick up a camera and essentially, like, talk to early injured Anna in that capacity.

And I mean, she needed to hear a lot of the lessons that I'm bringing in my content nowadays.

And I wish that I could just go back to the hospital bed and say everything that I'm saying online and give it to her.

So what is it like being a social media creator and potentially being seen as representative of the disabled community online?

I think that's a great question.

And it actually has been a bit of a challenge.

As, as Charisma and I have developed our business and grown.

At times I wonder if I am a relatable, you know, representation for some people.

You know, we we have a great marriage and, you know, we have the capacity to go out and like, you know, do a lot of trips and a lot of things all the time.

And, I don't know, it's interesting because a lot of people, that's not their experience.

It's not their experience at all.

And representation is important and people are looking for representation that they can relate to.

I think it's very nerve wracking to kind of be a a large creator with a disability.

If I'm being honest, I always get really nervous when I get a huge influx of followers.

Because I have to, like, temper it every single time.

So people, one, know that they're not talking to a child and then two, know that I'm not the one.

So I think that when it's, you know, having a huge online presence is also very difficult because I try to be as humble as I can and understand, like my experience is just my experience.

And I try to let people know that whatever, whenever I'm talking from an individual lens, it's just me.

But I try to draw things out to more systemic ideas around disability, ableism, and eugenics, because those that's what everybody experiences, no matter whether they can put a name to it or not.

And so that's kind of how I try to frame things, is through a more intercommunal societal lens so that people feel more included in these conversations.

And of course, there's always non-disabled people and even sometimes a lot of disabled people that will try to position disability as some sort of fringe issue, where, you know, our needs are already taken care of.

I saw this TV show and you all are lying about benefits.

You all are lying about the inequality you experienced.

And no, this is very real.

This is very real to us is something we live every single day.

And I think that those are the most irritating comments because everybody, wants representation.

And when disabled people want to represent themselves, we're not seen as, like I said before, reliable in talking about our experiences.

And so that's what I always have to deal with.

Yeah.

I mean, it's it's difficult and it's hard.

I mean, everything that they had already mentioned, sometimes I feel like I experienced a little bit of imposter syndrome That’s a really good point.

All of a sudden now you’re speaking on everything, And I’m not an expert in law, you know, I’m not an expert in, health care.

I have my lived experience, and I try to make it individual like Imani was saying.

But it does, it does start to feel after awhile like You’re supposed to be the voice for everybody, and I can’t... I can’t speak for everybody, I’m figuring my own stuff out, you know.

I think that’s where we all, as creators, have, like, a responsibility to, repost, share the voices of other disabled people whose experiences we can’t speak to.

I want to share one more clip with you all this time.

We're going to hear from Reid as he talks to Elizabeth Bouvia’s sister.

Elizabeth Bouvia was a disabled individual who fought for medical assistance in dying, and was a huge inspiration for the creation of this film.

Reid is trying to uncover what happened to Elizabeth and why she might have wanted to die.

Yeah, it's very, very scary thing.

I mean, in talking to the sister of someone who was going through this program, I imagine she felt the energy from these doctors and, you know, and she's nodding your head saying, yeah, they probably just want to get rid of it.

That's very scary.

Yea and to Reid’s point, you know, doctors seek to eliminate, because disability is the deficit.

It is the difference.

It is to be eradicated.

But how, how much are you treating when you're trying to get rid of a disability?

And if you're only seeing disability as a deficit while treating it does eradicating it mean eradicating us too.

I think something that this clip does a beautiful job at is emphasizing just how ableist those power structures are.

And so Reid did a great job at highlighting that.

in your opinion, what would an ideal support structure for something like MAID look like?

I have an idea I kind of want to throw out first to get y’all’s opinion on it, I'm not an expert at these things, but perhaps it would make sense, And I kind of formed this, opinion around Michal's experience in the film.

How, like, he was pretty set on, you know, going through with the, the MAID program.

And once he had all the support and the care that he needed and all of the accommodations that he needed, he changed his mind.

I'm wondering if for those who would like to go through with the program, maybe there's like a waiver or something.

I know when I was first injured, I was put onto a particular waiver that gave me certain benefits.

Perhaps there's a waiver that we could make this like 6 to 12 months where someone can apply be brought on.

Maybe they have all of the their needs covered for that window.

And that includes, you know, meeting with the counselor, therapist, whatever that may be.

And then at the end of that program, if they still feel like they want to move forward, they can.

I don't know.

This is just a loose thought.

I'm throwing it out there.

What do y'all think?

No, I agree, I think that... Well I think that a lot of people's desire for things like MAID and medical assistance in dying is basically more systemic than individual.

And while I think, and while I do think that 6 to 12 months would be a good stopgap for those situations, I think we also need like legislation for universal health care and, universal basic income for disabled people.

And Canada is an interesting case because while they do have a lot of like medical care and a lot more supports than, you know, a very pay to play version of the United States, the issue is also that they went through a lot of austerity measures at the same time.

That reduces that ability to get that care.

I think that within the United States, we don't really do too much education in the community around what it is you have access to.

And we also don't let people know what works for us.

I think that once we start addressing some of the systemic issues, I think for longer than those 6 to 12 months, I think that I would at least be a lot more comfortable with medical assistance in dying and under, and, you know, having people have more access to that tool.

When you look at the system as a whole, it's less about choice and more about convenience and cost and just discomfort with difference.

And I think one thing that I thought about was if we could start at the foundation with medical providers in education, and get into, humanizing disabled people in the context of, like, what they're reading in books and lectures and, pretty much just draw out the point that there is a social model of disability.

And then there's a medical model of disability, and the social model isn't oftentimes talked about.

And that, I believe, is what reflects the whole picture of living life with a disability rather than the medical model, seeing us as a diagnosis or something to cure or, etc.. And so I think there's something to be said about that.

Yea, we're a financial burden on society.

I think that's a great, great point.

And part... Isn't that kind of what Reid was trying to point out too is like when you have people making the decisions based off of stats on paper, there's no humanity there at all.

And that is going to be, you know, that's a slippery, dangerous slope, that we got to be careful about.

And I think we’ve all had the experience where you, even in doctors’ offices, even in front of medical providers, they're not even speaking directly to you.

You know, it's always the mom, your mom or your dad or like to somebody you brought with you to take notes, and you're not even declared, an authority over your body while you're talking to your own medical provider.

I've had situations where they didn't see my crutches right away, and they were talking to me normally.

The second they saw them, I started getting baby talk.

That's not somebody I want dictating what my quality of life is supposed to look like when they are determining my quality of life.

They don't really realize as medical professionals, just how far reaching their jobs are.

And I think that that's kind of devastating to realize as well.

I wonder if you guys had a, have an idea, an opinion on, how we can practice an accessibility mindset around medicine that could benefit all people or even just change the way that medical providers are, talking to those with disabilities and actually talking to them and not around them or to somebody else.

Yeah, I think the key is getting people with these, with our perspectives in the right positions.

I don't think there are enough disabled people that are making these decisions or placed in a hospital system to train, you know, everyone there on disability etiquette and understanding those things.

Although you would expect medical professionals to be the ones that get it, you know.

But, yeah.

Yeah, I think that doctors and medical professionals need to go through some social work training as well.

While I do think that speaking to and with other disabled people is extremely valid, and I want to see that done more often.

I think also they need to understand, like the far reaching impact of what happens in their doctor's offices.

There are so many doctors that have no clue that if you write something down on my chart, it could determine whether or not I have access to my life.

Getting into my home, getting into my my car.

Like they have no clue just how far reaching, their jobs actually are, and they need to have a lot more awareness of just how much power they actually hold over the population of people that they see every single day.

when I was watching the film, I couldn't help but think about what the future could look like here if it became as accessible as it is in Canada.

And to me, that kind of seems a little scary.

And I wanted to know how how you all felt about that, because I think I was really struck on, like, how, what we talked about at the beginning, but also while I was watching the film that a lot of this is used as like a financial, fix.

And so I, I thought that it was kind of scary to think, like, if we bring it to the U.S.

I think it's going to really stigmatize it very badly.

Particularly in medical settings.

I fear that people, instead of getting actual treatment, will just be shoved over to MAID, and those types of things, many, many disabled people in Canada have come forward to say that, like their doctors have been openly suggesting them and suggesting to them medical assistance in dying and in lieu of treatment.

And so that's what I fear the most, is that and like I said, in, in particularly in such a racialized society, as the one we have, that’s my greatest fear, is that people will be pushed to this instead of actually getting the care they need.

I would, I would agree with that completely.

I mean, to keep it short and sweet, I think I fear that.

How quickly people are to push a cure onto us is how quickly they would be to push on MAID.

I tend to agree with both of you.

I mean, just the fact that when I broke my neck, I immediately went to I went there, you know, like, I don't want to do this.

And I had little idea of disability.

Like, I can only imagine if like I had seen stuff in the news cycle about MAID and how, you know, disabled people want to just die and stuff, and then I sustain my injury.

I would have been like, there's no shot I’m gonna do this.

I want to do what they did.

So I have a lot of concerns with with how it will impact the stigma that we've been fighting so hard to combat.

And I think that in a country where we are reluctant to have disability representation, reluctant to have universal healthcare, reluctant to have universal basic income, reluctant to have rental protections, and all of these systemic, all of this systemic welfare people will automatically choose that.

And that's my fear.

I wanted to be able to bring in a little bit more of a lighthearted mood and kind of play like a little rapid fire game with you guys.

My first question is what do people think you spend your day doing?

And what do you actually do?

I think people think that as a content creator, all I'm doing is hitting upload.

And pretty much that's as far as my 40 week work looks like.

What I'm actually doing is being, producing a one woman show where I'm working on pre-production, production, post-production, managing social media, and there's just so many roles within that.

I think people think I'm just like laying around all day, which is fair because I am in my pajamas a lot.

But, I'm also a consultant, a writer.

I'm editing my book.

I'm a friend, a girlfriend, all these different things.

So I'm doing a lot of things all the time.

I think people assume that I, I'm doing what's in my content, which is like gallivanting around with my wife.

When in reality, I'm probably editing or responding to emails or mustering up the energy to get back to texts that I haven't responded to in several days.

Next question.

if you could choose a different profession, what would it be?

Anna, let's start with you.

I'd probably say a wedding planner.

I probably would say a screenwriter.

I’d probably just, like, be a peer mentor in a hospital or, like, a patient advocate.

What's one misconception that you always hear about your community that you would like to disprove?

This is probably coming into mind because it's most relevant in my life right now.

But people don't think disabled people get married.

But is that why you want to be a wedding planner?

Partially.

I'm also in the season of planning my own wedding.

So, like, all of this is just very, up in front of my face, so.

Relatable.

Imani?

Disabled people’s desire is to be non-disabled.

Which I've never wished for that, but, I mean, at least for me personally, And I just want access to my life fully.

I don't want to be non-disabled.

I think I have two.

One is that quadriplegics can't move their arms.

That's really frustrating.

I had people tell me all the time that I'm not a quadriplegic because I can move my arms, which is not the case.

And then it's similar to Anna's point.

Just the fact that, disabled people can be in loving relationships, even if it involves caregiving.

Is there a story that sparks joy or optimism found in the work that you do?

I think any time that, newly disabled person or disabled person who has felt a lot of shame feels more comfortable in their own skin.

To then go out and get the mobility aid, to then go out and get the help they need.

I'm always really encouraged and I love watching my comment sections.

I will try not to get teary-eyed, but like, I always watch my comment sections and I see like two disabled people like going back and forth teaching each other how to advocate for themselves.

Like, I love that I'm a part of that space or that I'm creating that space.

And that's what matters the most to me out of anything that I could do.

And that's beautiful.

I’ll trying not to get teary-eyed myself.

I recall a message we got from either a mother or father of a very young, disabled girl who used a wheelchair.

And the message was, sharing how when they put our video on the TV, the daughter looked up and said, whoa, that's just like me.

It’s just like, he uses a chair, just like I do.

I was like, oh my gosh.

That means a lot to me.

We've been talking about representation and how important that is.

So... and this will be like the first generation that's growing up with social media and like the representation that we've been able to create and, being a part of that is dear to my heart.

I recently did some peer mentoring with, another early injured spinal cord injury individual, and their story seemed so similar to mine in the sense of like when they were injured, when they acquired their disability, what their disability is, even down to their name and the way that, I mean, she didn't have to say anything.

I can tell that even just looking through her eyes, that she knew that she was going to be okay was so touching and beautiful to see.

And it, I mean.

It's the reason why, why I do what I do.

Unfortunately, our time has to end.

But, thank you all so much for such a great conversation.

And, to the viewers at home, or those of you who are watching this conversation.

If you want to learn more about this topic, take Cole’s advice.

You can watch the film Life After on the PBS YouTube channel or PBS app.

It's streaming now and the link is, of course, below.

Thank you so much.