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Chelsea speaks with writer and disability advocate Imani Barbarin about navigating our (lacking) healthcare system, how being disabled affects one's finances, and what everyone should know about living with a disability in America.

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Hello, everyone, and welcome back to an all new episode of The Financial Confessions.

This is I, me, your buddy, Chelsea Fagan, founder and CEO of The Financial Diet, and person who loves talking about money. And we talk about money quite a bit on this show, and the way it intersects with a lot of things.

But often when we talk about money, whether it's intersecting with fashion or health care or our professional lives or travel or any of our consumer choices, we will have people in the comments telling us about how these terms like "accessible" or "affordable" or any other normative word we're using only really applies to some of us. And that people living with disabilities often do not have even remotely the same level of access or affordability to many of the basic, day-to-day expenses of life that we're talking about. So many of our decisions exist within a prism and a framework that prioritizes, and in many cases necessitates, being able-bodied.

And although the pandemic did recently teach many of us that health is very much conditional, as is ability, and that often even when we're making the best choices it is out of our hands, we still have a ton to learn when it comes to disability, how we relate to it as a culture, and how we effectively punish people for being born in the wrong bodies. All of us could benefit from a health care system, amongst many systems, which is more accommodating for all of us. But these big policy-level changes are almost certainly not going to be made until we start to understand the reality of how all of us are living.

I reached out on Twitter to ask you guys who I should talk to specifically about the intersection of disability and money, and you guys overwhelmingly pointed me to my guest today. And also sent me tons of great questions for her, which I will be getting into. And Thanks to Policygenius for supporting this episode of The Financial Confessions.

Policygenius is your one-stop shop to find and buy the insurance you need. Head to policygenius.com/tfc to get your free life insurance quotes and see how much you could save. Without further ado, I'm joined today by writer, creator, speaker, activist, and advocate Imani Barbarin.

Thank you for having me. I appreciate it. Thank you for being here.

So for those who may not be familiar with your work, could you talk a little bit about who you are and what you do? Sure. So my name is Imani Barbarin.

I go by Crutches and Spice online. I started my online presence around 2014 in order to just talk about being disabled and Black, and a disabled Black girl. And it's kind of really grown from there, especially during the pandemic, as people started to realize just how much of their life is dictated by ableism and the way our society is set up to really fail disabled people.

So that's kind of the work I do. I kind of just shout from the rooftops everything that people need to know about disability and how you can assist disabled people. As well as-- I really love centering disabled people in all discussions because our voices are rarely, if ever, heard.

And when they are, they're kind of tamped down and pulled apart and just talked over. So I really love centering disabled voices. You know, I mentioned in the intro that a lot of times when we talk about various subjects on the channel and we speak about them in terms of their accessibility or affordability, we'll have people reminding us like, OK, but maybe only if you're able-bodied and able to access these things or afford these things.

When it comes to advocacy for lower-income folks, for financial issues, what are some of the ways in which we tend to have a blind spot on the intersection of money and ability? Well, I think the first thing to understand is that in order to have care in the United States, in order to have access to robust health care, especially for chronic illnesses and disabilities and diseases that go above and beyond regular, every-day health insurance, the United States will legislate you into poverty. And so there's a high amount of poor people that have disabilities.

Not only that, but racism in itself is disabling. So when we talk about access and financial needs of disabled people or poor people, you're usually talking about the exact same demographic. And so disabled people have to have usually less than $2,000 to their name, if they're on Social Security income, in order to keep their benefits and keep their health care and keep their services.

And it can be very daunting for a lot of disabled people. When you say they have to keep $2,000 to their name, does that mean that if they have more than that they lose access to those benefits? Yeah.

So that's the threshold. That's the most you could have-- pardon me. That's the most you could have to your name as a disabled person, if you're on Social Security income.

And different states have different levels, but it's pretty much-- the average is around $2,000. Yes. What is so mind-blowing about that is that it's not even close to what most people would need in terms of an emergency fund, which is on average three to six months worth of living expenses just in case of emergency. [CHUCKLES] Oh, no.

And then on top of that, with the Social Security income payment, you're only making about $850 a month, at most. That's the most you can make. Some people make as little as $50, $100.

Very, very little money. And when you think about the average cost of living per state, that's not nearly enough. No.

Well, we talk quite a bit on the channel about persistent economic myths. And one really common one is sort of the "welfare queen" myth. Thanks, Reagan-- amongst many other atrocities.

But another one that I think a lot of people kind of keep in the back of their mind as a framing is this perception that a lot of people are in some way gaming the system, or profiting off of the system. Can you talk a little bit about that? I hate that idea.

It is so ridiculous to me. Because when you think about gaming the system, people think you're making millions upon millions of dollars, making hundreds of thousands of dollars. A majority of disabled people are not making barely enough to cover food per month.

So this idea that you're making a crap-ton of money by gaming the system is laughable. And then on top of that, you have to think about all the social implications of being disabled in our society. There is no upside to pretending to be disabled.

And quite frankly, I would rather believe somebody who is faking-- I'd actually rather believe a million people that were faking then disbelieve one disabled person that was not. And we have this mindset that gaming the system is so prevalent. I mean, we talk about it in every single facet of American culture.

Somebody's getting one over on the system. Like, the system's not that great to begin with. So nobody's really getting one over.

No. And also, I mean, if you manage to get-- like, if you're a low-income person who manages to get a little something extra, like good for you. That's like all wealthy people and corporations do 24/7.

And it's nearly impossible to game the system. In order to get a Social Security income hearing, the average wait time is three years. And throughout that entire time you're supposed to have less than $2,000 to your name.

And between 2009 and 2019 100,000 people died waiting for Social Security hearings. So this idea people are gaming the system en masse is absolutely ridiculous. And also, I mean, if you have to live with such a low amount of wealth on you at any time in order to stay on it, objectively, for most people, you're actively punishing yourself financially if you choose to stay on those programs.

Yeah. Yeah. There really is no disabled middle class.

You either have to be independently wealthy or extremely poor. There's very little people-- there are very little disabled people that are making it month to month just on what they make. It's very difficult.

And so to just kind of understand the way the system works-- so you can't have more than that amount of money, I assume, available in checking or savings. Does that also apply to things like investments, retirement, et cetera? Yeah.

Basically anything that's not in what's called an ABLE account, or in some of these financial tools that are designed for disabled people. And they evaluate every single bank account. If you have more than one car-- things like that.

They go through every single asset you have. And what about in terms of income that you're bringing in that maybe you don't keep on your books? Like, if you have a source of income and you spend it to the point that you don't have more than that $2,000, is that also not OK?

It is OK, but it's very, very tricky. People can go over by $0.50 and lose their health care. So it's very tightly-controlled.

I've heard of people who were over by like $3.00 one month, and everything was just done, done for, cut off. So it's very sensitive. Do you find in the-- I'm sure there's a huge, huge spectrum here of the community of disabled folks, but do you find that in general people opt, if at all possible, to not use these programs so as not to live under those constraints?

You may not have a choice. Right. Like I said, I think the idea-- we have this really idealistic view of employer-related health care.

So I have cerebral palsy. Right? And I have very specialized care.

And I know people who have Crohn's disease, different things like that. Your insurance may not cover that. The treatment that you get may not cover that.

So it may be financially risky for you to even have a job. Right. If you're paying more for co-pays and for out-of-network care, it may not be financially feasible for you to have a job.

So when I say they legislate you into poverty, you have to go to Medicaid or Medicare that has the more robust health care that you need and to stay underneath that income limit, regardless. Like, it's either your life or your job. Right.

Right. No, that totally makes sense. I think what I'm interested-- what I'd love to understand is, for people who might be on the margins of being able to have a job but for whom it would probably be better for their quality of life to not work, are there instances where people are being pushed into working even when they probably shouldn't because the benefits are not sufficient?

Oh, definitely. Yeah. Definitely.

I mean, the pandemic really revealed to us just how many disabled people were working that had never really revealed to their employers that they had a disability in order to get that work. So there are a ton of people who are working to make ends meet to just survive and who are now, again, having to choose between their health and their job. And when it comes to retirement planning-- so, that's an entire, huge subsection of what we talk about here.

And a lot of times when we talk about retirement planning and savings and things like that, we will hear people in the comments saying this is very different for those of us living with disability. We can't access these same programs. We can't use 401(k)s, et cetera.

What options are there for people in these programs to plan for retirement? There's very, very little. The expectation is that you'll be on Medicare or Medicaid for your entire retirement or life.

And if you don't pay into Social Security-- if you don't have the ability to pay into Social Security because you're unemployed, you're not going to get a whole ton of Social Security in your retirement years, regardless. There's very, very little. There are waiver programs for elderly people that are state-run.

Basically you apply and hope that the state will cover your living costs or your programming or your services. But there's very little. I don't even really-- I really try not to think about my retirement, because I don't even know.

And then on top of that, if I'm saving money-- my dad is an accountant. He's obsessed with me saving money for retirement. But I don't even know how much I'm supposed to save, because in addition to just the regular amount there's also the fact that disabled people pay 28% more for the exact same quality of life.

So I would have to be making way, way, way more money and putting it away in order to retire, and then not even know if I could utilize it. And then on top of that, if you're disabled or become disabled and need long-term care when you're older, Medicaid can require you to spend down all of your money. They will force you to go broke before those services are covered for you.

So it's not really much of a choice for disabled people. Another area where we often hear commentary along the lines of, you know, not for everyone, these are not norms, is when we talk about consumer choices, especially as they pertain to products that increase convenience, increase accessibility, increase usability. And often the things that are most accessible to all bodies are the things that are, in some ways, sort of exploitative or looked down on in other ways.

For example people will talk about, oh, there are a lot of certain convenience services and delivery services that you shouldn't be using. And then people will say, well, some people rely on these things to have access. Similarly, banning a lot of things like plastic straws while many people need those in order to consume beverages.

And you look at things like even fast fashion or pre-prepared foods. All of these things that a lot of, I think, very progressively-minded people want us to kind of move away from and in many ways, I think, stigmatize, are things that a lot of people rely on from this prism of ability. Can you talk a little bit about that sort of dichotomy within the progressive world?

Yeah. The first thing I have to say is, I really can't stand when people say that you don't need this or you don't need that, and they offer no other supports to people. A lot of the times non-disabled people will make a list of things that disabled people should not be doing, or just the general public should not be doing, and then they offer no alternative and they have no idea what it actually requires to be disabled.

There are always tons of things that disabled people come across, from sliced apples that are individually packaged, to-- I saw unpeeled orange. And people were like, why would you even bother? You can peel an orange.

If you don't need it, don't buy it. [LAUGHTER] Like, if it's not for you, it's not for you. But there are people that are going to need it. And simultaneously they seem to believe that we all have help at home, that we all have services at home.

We do not. A lot of us are just slogging by, day by day by ourselves. And unless you are offering to come to my house and help me with this myself, I'm going to figure out a way to do it by myself, because you are not there.

You're not there. You're not here to help me. And all these judgments on what I need to do to survive while you offer no assistance whatsoever, are useless to me.

So I really kind of ignore them at this point because I'm like, what am I going to do? I have to have grocery delivery. I can't carry my groceries by myself.

I walk with crutches. Like, everybody wants me to use glass containers. Everything knocks against my crutches.

I'll break them. You know? Like, there's little things that they don't even think about.

Yeah. When you talk about-- when we talk about the consumer aspect, for example, I feel like there's a ton of shaming when it comes to consumer choices. And we talk quite a lot on this channel about how lower-income people are shamed and judged and picked apart about basically every consumer choice they make.

And any time-- like, how dare they own an iPhone. Even though for many people in this country a smartphone is your primary computer, how you get and maintain a job, how you travel, how you pay for things, et cetera. And of course higher-income folks don't even nearly have those same judgments, despite being much more wasteful.

But it seems like that's hugely intensified if you are disabled, because then there's that added perception of like, hey, our tax dollars are paying for this. You better only spend on certain things. Do you feel that there is that heightened level of judgment for what disabled people will spend money on and how?

Yeah. I feel like there's a lot of disdain for disabled people in general. And so there's a microscope over what we do every single day.

I buy my crutches on Amazon. People don't want me to shop at Amazon. I'm like, I get it, but this is where I buy my crutches.

Our consumer choices are vetted quite seriously. And to be quite frank, a lot of disabled people are more sustainable and are more budget-conscious and ethically sourcing things than non-disabled people are, because we have to. It's a requirement for our health, for our safety, for our finances.

We have to do so. And so this judgment, which is really based off of this idea that-- and I hate to say it. A lot of people just don't believe we should exist.

A lot of people think that anything that we take out into the world and put before us and use to help us is over and extra because we shouldn't be here at all. And we see this in the attitudes that we talk about the pandemic, our spending habits, every aspect of our lives is put into question and debated all the time. There is a ton of scrutiny for being disabled.

But unfortunately, for all the people judging, the only thing that separates me from you is luck and time. Right. So all these judgments that you are making, all of these ideas that you have about that are better-- look around.

This is your retirement plan. The society that we built that is not accessible, that is not inclusive-- this is what you've got. So you fix it now, you build inclusion now, or you'll be at its mercy later.

So all these judgments that you're holding about what we do with our money, what we do with our time and resources, they're not useful to you. So figure something else out. That's absolutely right.

And, I mean, at a certain point age-- ageism and ableism clearly convene, for most people. And eventually, I would say-- I don't know if it's a majority, but it's almost certainly a plurality of seniors in our society have to work, to some extent, in order to fund retirement, which is absolutely unacceptable in a country this wealthy. But I think part of the reason that we're able to sort of brush that off is because, quite frankly, young people don't imagine it will ever happen to them.

And it's like, well, of course you'll become an old person someday, unless you don't make it to that age. But otherwise, you're totally right, that we're all headed there. Yeah.

And I think we have this fascination as a culture about youth and youth culture and making it big when you're young. And we don't really represent people who are older or disabled or who have chronic illness or anything like that. So people don't see themselves in those representations, therefore they think it'll never happen to them.

And that's intentional, to keep people working, to keep people grinding in the hopes that they never have to be in that situation. You mention grinding. Can you talk a little bit about the proliferation of grind and hustle culture and how you kind of view that as someone in your specific vantage point?

Yeah. Grind and hustle culture-- I can't stand that. I just-- I'm not doing it anymore.

And I was very much of the mindset, when I left college, oh, I'm going to hit the ground running. I'm going to move to New York and do all these things. And it didn't pan out that way.

And I still think of myself as good at what I do, but a grind and hustle culture is inherently ablest. And for the most part it is ablest to yourself, because you're overextending yourself, exhausting yourself, harming yourself, and a lot of times hurting yourself in the hopes that you survive. And, to a certain extent, that's what the system requires of you, is to keep going until your body breaks down.

But it doesn't have to come to that. Rest is just as important as anything else to your survival. So rest, lay down, take a seat, read a book, do something.

But grind and hustle culture tells you that you need to go on and on and on until you are broken. And then once you stop grinding, then what's left? You get to enjoy what you got?

Do you get to sit down and rest in the fruits of your labor? Not always. Very rarely do you get to do that.

I feel like grind and hustle culture kind of simultaneously kind of rose with wellness culture in a lot of ways, where I feel like it used to be more socially-acceptable, especially for women, to speak overtly in terms of weight. I feel like that's slightly less socially-acceptable, although obviously it's still hugely a paradigm in our society. But I feel like we've gotten to this place where we can sort of talk about health and wellness as a paradigm, which I also find very strange, because in many cases those are things that are totally out of people's control.

I'd love to hear you talk about health and wellness culture. So, to talk about health and wellness culture we have to understand our entire outlook on health in this country. And that is framed through what I like to call-- well, I didn't come up with it-- but the individual model of disability as well as the medical model of disability.

Which states that disability is a medical issue, illness is a medical issue, and it also is an individual problem. It's for you to fix. Not for society, not for the government, not for anybody else.

You fix your disability. You fix yourself. And then you can enter into society through that.

And that is wellness and wellness culture to a T. If I take care of myself, then I shouldn't have to worry about all these other things. It doesn't work like that.

You know? Health is out of your control nine times out of ten. Not only that, but your health is a group project.

And you need other people to help you remain as best as you can and as relaxing, as at peace in your own body as you can. You need other people to do that. And we're told that it is an individual issue, so that we don't look at the system as a whole.

We don't look at the things that are out of our control, our for-profit healthcare system. The fact that we legislate people into poverty, that we have food deserts, and income inequality, and environmental racism. All these things-- people fail to look at those things.

But they say, oh, did you have your kale shake today? Did you? Did you really?

Did you walk around today? Did you really do it? You're like, it's smoggy outside.

What the hell are you talking about? My health is not just-- it's not just me. It's not just on me.

And it bleeds into every other aspect of our society. You know? We have people saying, I don't want to take care of your health.

I don't want you leeching off my money with universal health care. Look outside. Look at what we're dealing with.

It's not all on the individual. We have to come together at some point and say, it is unacceptable for me to watch other people suffer, and then blame it on them and then never question the system as a whole. It's interesting to talk about the health care system because-- we have gone over this so many times on the channel, so I'm sure those listening are familiar with these stats, but just to reiterate-- we spend more per capita than almost any other developed nation.

We have worse health outcomes, lower life expectancy. You know, it's the leading cause of bankruptcy-- medical bills and all of this stuff. Clearly the system is not working, even for the able-bodied among us, even for people who are young and doing everything right from a health perspective.

Like, our health care system is still failing us in every way. And yet when we look at the choices people make politically, it seems like people are very much stuck in a cycle of wanting to keep this hyper-individualist, for-profit health care system. Why do you personally think that is?

Racism. [LAUGHS] I think a lot of it is racism. A non-governmental tribunal, I think, at the end of last year came to the conclusion that the US has continued genocide utilizing our health care system, basically forcibly disabling people utilizing our health care-- medical racism-- and then leaving them to die. The groups with the highest rates of disability are Indigenous folks and Black folks.

And those are the two groups that we blame the most for health care outcomes. It's intentional. People will cut off their nose to spite their face.

My mom always says that when it comes to racism and the way these systems are built. And if people-- racism makes the power structure that be a lot of money, but it is costing the individual everything. And so if your life matters less than your racism, then you deserve the health care system that we have.

Yeah. But if we actually decided to build a society that actually lived up to its goals and decided that we're not going to throw people to the wolves because they have a different skin tone or they have a different gender or they have a different sexuality-- if we decided that we're actually going to care about each other and not the people in power, then we could actually build a system that is inclusive of all of us. And our health care will be the very first thing that changes.

We have to change it. And I find it a monumental failing that during this pandemic there's been these weak little whimperings of, maybe we need universal health care. Why are we not fighting for it harder?

Why? This is the greatest health care crisis in the world. And we are looking at it, like, well, we're going to return to normal.

Normal never worked. Our health care system did not work. It does not work.

So what are we going to do about it? It was really-- I think few things made me feel more cynical than looking at the subreddits during the height of the past couple waves of COVID, for people who were super-staunchly anti-vax, super-staunchly anti-public health measures who were making fun of other people for taking COVID seriously and all of that kind of stuff, and then got COVID and either died or ended up in a medically-induced coma for multiple months or whatever their outcome was. And there's a subreddit with probably a million users at this point where there's hundreds of new posts a day of this still happening, where you see people who literally, from essentially their deathbed, are posting these memes making fun of people who take COVID seriously, essentially.

And it really, for me, created this feeling of, like, if that is not enough for people to rethink how they imagine community health and to whom they want to extend health to, including themselves, I mean, what will change people? Yeah. And I think it's really disheartening to know that our society is designed to eradicate all forms of community.

We don't have communities. I mean, there are certain cultures that have communities within the United States. But we, as a whole, do not have community.

We do not support one another. We do not help one another out, and we actually laugh at the people that do. Like, we ostracize people.

We isolate people who dare to care about other people. And that's the first thing that needs to change about us as a society. I want to take a quick pause and once again thank today's episode sponsor, Policygenius.

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Depends on who you are. Well, what I'll say is this. When I started-- when the pandemic started I had about maybe 40,000 followers on Twitter.

I hadn't even started my TikTok, and I had maybe 10,000 on Instagram. And almost like clockwork, as the pandemic started-- as non-disabled people started realizing just how ableist our system was, all of my profiles just skyrocketed to a point where it was unmanageable. Because I was like-- I didn't expect that trajectory to happen.

But it did. And it was absurd to me because I'm like, we've been saying this for years. All of this stuff is not new.

Everything that we're talking about in terms of the system leaving you in the dust, about you having to spend down your money if you want health care, about not being able to get married if you're disabled because you'll have too much money in the bank if you combine assets. Like, all of these things we've been telling people. And now that it affected them they're like, oh, now we're ready to listen.

At the same time it's like a firestorm for disabled people because we're reading over medical rationing guidelines that are telling us that if we get sick, we'll be the last to get care if any, or stock up on these things because you're not going to be outside for a while. You know? Nobody's really going to get to care for you if you're in the hospital.

So I think people started to care because it affected them. But I do think that there is such a lack of empathy to begin with. I mean, our society created eugenics.

The eugenics that started here inspired the Nazis, not the other way around. And so it is a through-line through all of our history. And it really reared its ugly head during the pandemic.

I don't think it ever went away. I don't think that it increased. I think it just revealed itself to a lot of people who were not at its mercy.

You mention health care and kind of interacting with the system. Can you just kind of walk us through a little bit the experience of interacting with the health care system if you do have a disability? You mean in terms of the pandemic, or just in general?

In general, but definitely if there are specific differences in the pandemic, I would love to hear them. Interacting with health care, especially if you have a pre-existing condition that's not "of the norm," I guess, it's a lot of phone calls to get prior approval or haggling with your insurance from month to month to get your medication covered. It's a lot of out-of-pocket spending, if you're on an employer-based health plan.

Transportation is a nightmare. I mean, every single aspect of a disabled person's life is dictated by our health care. You know?

It's hard for some disabled people to even get to the hospital or get to a doctor's office to coordinate transportation. Paratransit is horrible. We are also in the midst of a direct support worker crisis.

Like, there's not enough direct support workers to go around, so people are going without aides and assistance. There's also the fact that a lot of people struggle to even get a diagnosis, especially if you're a woman or a person of color or a queer. It's very difficult to get diagnosed.

And then if you do, it can be held against you in a lot of different cases. And I think what a lot of people don't realize about health care is that it impacts everything. I mean, there's certain cases in which, if the doctor writes down the wrong thing on your chart, you could lose the right to vote.

So if somebody decides that you-- How so? --need to be in a conservatorship or a guardianship because of what a doctor recommended, you could lose your right to vote in certain states. It impacts literally every aspect to your life. And during COVID what wound up happening is that disabled people lost everything.

Almost immediately, services just stopped. Day programs stopped. Direct support workers could no longer interact with a lot of their clientele, so a lot of people lost their direct support.

A lot of special education programs just stopped immediately. And then all this with the underscoring of, hey, we made society more accessible for non-disabled people, which was just a punch to the gut. So it was-- COVID really changed a lot of things.

And things are starting to go back, but I don't think we're ever going to get back to a place where we were before. And to be quite honest, we shouldn't have even been in that place. A third of people who died of COVID did so in nursing homes and congregate care settings.

So it's been rough. What is your current comfort level with activities and things like that vis-a-vis the pandemic. So I've been going out.

I traveled, but I keep my mask on. And I even still get minor panic attacks with the idea of leaving my cocoon little space. And more so now I have to be traveling more for work, as it were, going to conventions and different things like that.

But I'm staying masked. I don't care what anybody says. They can look at me sideways.

I was just on a plane back from vacation the other day, and these men were complaining that they had to put on masks in Philadelphia because there's a city ordinance. And then they get off the plane in Philly and less than half of the people are wearing a mask, regardless. Nobody's enforcing it, despite this city ordinance.

So it's awful. And I worry about my friends, especially those who cannot get vaccinated, because I think that that gets lost in the conversation. We talk a lot about anti-vaxxers and anti-maskers.

We don't talk about quite often the people that just cannot get vaccinated. I have a friend with severe allergic reactions who was recommended to not get the vaccine. Are they not able to exist in society anymore?

Are we not allowed to anymore? Is this a resurgence of the ugly laws? Sorry.

The ugly laws were laws in the 1860s to 1974 stating that disabled people couldn't be in public because we disturbed non-disabled people by looking at us. Oh my gosh. Yeah.

I mean, how does it feel when people talk about the deaths being mostly elderly and disabled folks. Like, well, that's a good thing. That's a positive sign.

Like it seems, even from my vantage point, like I can't imagine hearing that. I mean, I've heard it so often. I think I oscillate between absolute rage and-- I've heard it so often, I'm just like I don't know what to feel about it anymore because I'm exhausted of hearing it.

And it really hurts that so many people think that way. But it enrages me because there's all these false promises for disabled people about inclusion and about representation. And then the minute people are inconvenienced-- to be clear, inconvenienced by having to wear a mask or having to have these ordinances and all of these things-- then we're disposable.

Really? So I just feel like a lot of people are liars, and lying to disabled people about how they actually feel about them. Well, yeah.

A lot of people are liars. That's true. [CHUCKLES] You mention representation. I feel like-- I mean, listen.

Hollywood is always patting itself on the back prematurely. But there's been a lot of conversations about, oh, there's so much more representation in all kinds of television and media and film and whatever. How do you feel about that specifically as it pertains to disability?

Disability representation-- it's been increasing in some ways. I would love it for it to be more diverse disabled people. Right.

I feel like I do have a vendetta against the journey of the disabled white man to get laid. I'm sick of that storyline. Can we pick a different one, for the love of God? [LAUGHTER] You know?

Anyways. But I think with representation-- it is getting a little bit better. But I wish there were more diverse and cultural narratives around disability.

Because disability is very different from race to race, from culture to culture, from gender. And we don't talk about the nuances to disability enough. But I do see opportunity on the horizon, and hopefully I'll be there to help create those opportunities in some way.

Indeed. So as I mentioned, you guys asked a truly amazing number of questions. So I'm going to dedicate the rest of my time with Imani to ask some of them.

OK. So a lot of people asked about the savings aspect, and what you have to give up, et cetera. Is it still the case that disabled people are required to give up benefits to save money?

It sounds like yes, because you can't have more than the $2,000, right? Yes. There are certain tools though.

I think most states have what are called ABLE accounts. OK. And each state has their own regulations on them.

They can be very restrictive on what you can spend them on. But I think the annual contribution that you can make to those is about $15,000 a year. So you can save a little bit of money.

But again, look into those regulations as to what you're allowed to spend them on. Because that can be a little bit more restrictive than people are used to. A lot of people are asking about how you can generally sort of be competitive or even feel like you can pursue professional goals while, you know, especially under this sort of stricture of hustle culture and everyone should be working as hard as they can.

Yeah. In terms of pursuing professional goals, I think the hardest part in terms of getting a profession and pursuing things is non-disabled people's bias towards hiring you. A lot of disabled people miss a crap-ton of opportunities because people just either do not want to provide accommodations or do not think we're capable of the work.

And to be quite honest, a lot of disabled people are overqualified for the jobs that they're applying to, to be quite frank. With the exact same level of experience and knowledge as some CEOs, but are applying to entry-level jobs because that's what they think the company will give them. So that's usually the hardest part in pursuing professional goals.

But the savings aspect of it can be very daunting as well, as well as the money management. I recommend-- just quit my job like a week and a half ago to work for myself. And I recommend taking on as many projects as you are comfortable with, and really kind of creating a resume that is outside of these corporations or even organizations so that you can show off what you're passionate about and show off what you like to work on.

And then hopefully that will lead to more opportunities in the future. Speaking of professional stuff, what do you think-- this person is asking, what do you think about disclosing a chronic yet mostly invisible illness while interviewing for a job? So that really has to do with your comfort level doing so.

So what they're asking is that, during the application process the EEOC will ask you, do you have a disability, yes or no. Race, gender, disability status. And I have disclosed that I'm disabled on hundreds of job applications, and never got a single interview.

When I stopped disclosing, I got like 6 in a week. What I recommend is that, if you don't feel comfortable disclosing-- if you don't need accommodations either, that's an important nuance. If you don't need accommodations either, then you don't have to disclose.

Feel free to not tell anybody who doesn't need to know. However, if you do need to disclose, if you do need accommodations, wait until you have an offer in writing in some way. And then from then on, once you start requesting accommodation, make sure everything is in writing.

Right. I cannot stress that to you enough. Right.

Because you essentially-- like if there is going to be some sort of discrimination action, you have to be able to prove everything, and they're going to do their damnedest to disprove you. Go ahead. Sorry.

No it's that, exactly. Yeah. Absolutely.

This person says, as a fellow working, disabled, Black woman, has the strong Black woman trope come to haunt her? And moreover, which stereotypical trope is she subjected to more between helpless and disabled or a strong Black woman? That's so rude. [LAUGHS] No.

It's so not you. They like to put me on blast, and I love my people. But, yes.

I do feel very much so at the mercy of the stereotype mostly of the strong Black woman. Because I consider myself passionate and very dedicated to what I do, so people think they could pile on different things for me to also do. I keep getting asked to run for president or run for office, and I don't want to. [LAUGHTER] Exposure I already have, the amount of death threats I've already gotten-- like, I don't want to do that.

And I don't-- it's hard. And it's hard for me to not take that on, to actually take rest and to let myself say no and stop doing things. I struggle with that all the time, because I grew up on the bench, watching everybody else do fun things.

And so whenever people ask me to do things I'm like, I can do it. I could definitely do it. Nobody really thinks of me as helpless because I have an attitude problem. [LAUGHTER] So, yeah.

It's more the strong Black woman thing. OK. This person is asking an interesting question.

Would broadening the public definition slash understanding of disability ultimately help or hurt disabled people in the workplace? For example, diabetes is a disability, but the general population often doesn't interpret it as such. If employers paid more to cover insulin-- a dream-- do you think we'd have more people rallying against special treatment, or more people getting on board because a lot of people use insulin?

So I think what would happen in that scenario-- if we broaden the definition of disability, what we'll come up against is people refusing to identify as disabled for fear of being seen as other or being seen as worthless or less valuable. And so they, out of that fear, will rail against this more broadening of a definition. I talk about this all the time.

I tell people, diabetes is a disability, needing glasses is a disability, having asthma. All these things are disabilities. But people don't consider themselves that because, in a lot of cases, those are accommodated for.

But I think it would serve us, in a perfect world, for more people to understand how disability and whether or not you consider yourself disabled or even have a disability dictates how you move about the world. Because I think that that's something that we discount, is that ableism affects every single one of us. And we don't talk about it enough.

One thing that I really wasn't even aware of until I became an employer and started having employees take maternity leave-- which, thank goodness we're in New York State where it's pretty substantially subsidized compared to most states-- is like, a lot of the maternity leave subsidies from the state are either directly or indirectly linked with disability coverage. Because pregnant women and new mothers are considered, to themselves, have a kind of disability in the workplace. And I think we would probably be a lot better off-- and women and people having kids would be a lot better off if they understood that framing from the get go.

Because I think an unintentional result of not really classifying it as such is that people go into pregnancy and childbirth and postnatal life comparing themselves to a version of themselves before, rather than comparing themselves to this new framework. Yeah. And there is a list of horrors on TikTok of childbirth.

It is definitely a short-term disability. Like, I'm terrified. [LAUGHTER] Anyways. But, yeah.

Like, it's really helpful to frame it that way. Yeah. Absolutely.

Because people-- I don't know. I think that entire wanting to seem or to be seen as strong-- it hurts ourselves more than it hurts anyone else. OK.

I'll ask two more quick ones from the audience, and then we'll wrap up with our fun little rapid fires, because why not? OK. So what are some accommodations that can make life for disabled people not only easier but cheaper, too?

That's a hard one, because each person has their own thing, their own access needs. It's really hard to say, to be honest. I wouldn't know where to start.

I think we need more public funding for accessible infrastructure. That's what I'll say. Because I think that putting the onus on the individual to make their lives more accessible is so difficult to determine.

But if we make society more accessible, it would be far easier. We need walkable cities. We need public transportation.

We need paratransit. But I can't think of one thing that an individual could buy, because-- that's rough. That's a rough one.

Well, we also are getting a few questions-- and I would really love to know this as well. What are ways that you find joy and community and hope? I love collaborating with disabled people.

I love it so much. I really do love my community. I really-- I truly do.

I think that the disability community-- at least the little section I'm a part of. Because let's remember, disabled people are still people. The same dynamics still exist.

But the little corner that I've carved out is just amazing people, and I love talking with them, and just commiserating, and just having fun. I love reading. I love writing.

And I really love creating. That's my favorite thing. Yes.

And, sorry, there is one last one that I do want to ask about, because I do think this is really interesting. Any advice for navigating a relationship with an able-bodied person, especially as it pertains to money? Yes.

So, always consider your safety first. Disabled people are more likely to be victims of domestic violence and financial abuse. So take your safety first.

But also discuss expectations as the relationship progresses. A lot of disabled people cannot get married because of income limits, because of health care, because of monitoring, all these different things. So understand those expectations and let them know what your financial situation is, and what your financial situation may allow the relationship to progress into.

And always keep that clear and open communication with them about that. I love it. So the time has come.

Imani, these are our rapid-fire questions. They're just fun little questions about money. Feel free to pass or whatever you want.

Just whatever comes top of mind, rapid-fire. So the first question is, what is the big financial secret of your industry? Everybody's struggling.

Everybody's struggling. That is the truth for so many industries. What do you invest in versus what are you cheap about?

I invest in experiences. A lot of times I'm cheap about clothes. I will not shop for something if it's not on sale.

I don't care. Love that. What has been your best investment and why?

My best investment has been-- I have a scooter, and I use it for like events where I have to run around. Or-- I'm not running anywhere, so I'm using the scooter. And it's really great for me to get around at events where I have to be speaking and have to be at one block one minute and then another block another minute.

Amazing. What has been your biggest money mistake, and why? I don't know.

It's six in one hand, half a dozen in the other. Probably student loans. Like, I owe like $80,000 in student loans.

Listen, Biden-- we're hearing rumors. He might actually be canceling some student loans. So let's hope he comes through.

He better be. What is your biggest current money insecurity? Renovating my home to be accessible.

I worry about that. That's on my radar. What has been the financial habit that has helped you the most?

Taking care of things immediately, if I can. Yeah. And last question is, when did you first feel successful, and what does that word mean to you?

I first felt really successful, like, a couple of weeks ago. And this little kid, for their classroom drawing of somebody they admired, drew me. And I was in tears for like a day and a half.

And I was like, because the little kid was on crutches too. Oh my gosh. But when other disabled Black kids see themselves in me, I feel really successful.

What a touching answer. All right. Well, thank you so, so much for joining and sharing all of your wisdom and humor on these issues.

I so loved it. Where can our audience go to find more of what you do? I am on cruthesandspice.com.

I'm also at crutches_and_spice on TikTok, Instagram. And I'm at imani_barbarin on Twitter. I am also-- sorry.

I am also on collectivespeakers.com. You can hire me to speak at your company, university, or events. Love it.

And thank you guys so much for tuning in. We will see you on a brand new episode of The Financial Confection-- The Financial Confection? They're a candy shop. [LAUGHS] We will see you next week-- next Monday to be exact-- on an all new episode of The Financial Confessions.

Bye, guys. [MUSIC PLAYING]