"The only thing that separates me from you is luck and time... look around, this is your retirement plan." This right here. This should be THE argument even for the most selfish in our society. This WILL be YOU at some point in your life if not by circumstance, then by age. Do you want THIS garbage system being what you have to work with, or do you want something better?
Except the truly wealthy/powerful who currently run our system believe, and indeed may be right, that they will NEVER end up “like the poors”. Even if they lost 99.9% of their wealth, they would still have enough money to get themselves whatever they need.
@@JamesDecker7 this is the truth. Eat the rich. A murderous revolution is the only way to end this. Ngl I doubt to see it in my lifetime. I’m 26, as long as we have internet and enough of a roof to feel like we will lose something by risking to fight the system, we will never fight the system. It’s too scary for a majority of people to give up the bare minimum they get for an even less guarantee.
As a mildly disabled woman I was internally shouting “Amen” over and over. But as a white woman I was horrified to realize how ignorant I have been about how race plays such a vital role in the disability discussion. Thank you so much for opening my eyes. I have a lot of research and introspection in my future.
When I was 20 years old, I attended a rally to support universal healthcare attended by doctors and nurses and the speaker was a 70 years old doctor and said that when he was 20 years old he attended a rally for universal healthcare. He said he was saddened that in his lifetime there still wasn't any universal healthcare.
Universal health care is not so good it will mean ppl who can afford private will take up space on the government ins. Just ask Canada how that’s going ppl over there are dying too from long waits. We need something better then universal care we need good universal care and choice. So that ppl with money who can afford private ins don’t take a slot from someone who can’t.
I disclosed an invisible illness at a job interview to explain why I could only work a certain number of hours. They still scheduled me for like twice the hours I could do, When I brought it up my boss got mad. And it's like MAM I am not springing this on you out of nowhere...
Imani literally killed the virtual interview. Idk if it’s TFD or Imani’s setup, but this was the best interview not in the studio. No awkwardness, no phone disruptions, etc.
*" The only difference between you and me is luck and time"* If you saw me, you'd think I was a healthy young woman, although I'm blessed to feel 100% healthy...I'm a metastatic breast cancer survivor, much of what is stated directly applies to me, much of this applies to us all regardless of health status God bless you Imani
"If your life matters less than your racism, then you deserve the health care system that we have." Damn. This might be one of the best interviews I've ever watched.
Thank you for this discussion, and thank you for including Imani. She's amazing. As an invisible disabled person I'd also like to talk about "health and wellness culture." Stop asking disabled people "hAvE yOu tRiEd YOGA?!?" like it's gonna solve all their problems. Just. Stop.
im so glad you brought imani on because the pennies that ssi benefits give disabled people is CONSTANTLY missed from every conversation about budgetting. the max budget (for even NY) is unlivable. llike at this point there is no way out of poverty unless my disability was cured or there was a livable universal basic income.
I had a double lung transplant at 18 years old right after high school. My doctors crammed down my throat the idea that I have to go out in the world and be normal. When I got my first job I was severely exhausted and almost passed out while working sometimes. I was an apparel associate at Walmart. I thought that this was just normal grown up working life. I ignored these symptoms until I finally switched hospitals. Within a few months I found out that my lung transplant was chronically rejecting. I felt pushed to work and try to live a normal life even though post transplant I was still never healthy enough to lead a normal life. I had another transplant a few years later and even then I felt pushed to work to make ends meet on top of SSI. This led to another acute rejection which is now chronic.
I lost my benefits when I got married. My medications, not including other medical care, are over $10k a month. I can't work because no one is willing to accommodate me. I have narcolepsy, Ehlers-Danlos Syndrome, systemic mastocytosis, ADHD, and I'm autistic. Wtf am I expected to do with all of this? I have medicaid, but thinking about having an income, an emergency fund, retirement account, or doing any investment is a joke. This was by far my favorite episode on the channel, and I've watched every video!
@@skylarsaysstuff I wasn't brainwashed. It was a choice. I DO deserve those benefits (the government is at fault there), but I also have to live with my conscience. No amount of money is worth betraying your personal values
@@kokitsunetora I suppose many have asked you this but have you applied for social security disability or any other disability benefits through your former job (many jobs have long-term disability benefits built into their employment packages but there is a time limit to apply). Who is paying all of your expenses? Of course one needs the support from a doctor to apply for these benefits but getting it for at least your medication seems like a good idea. I think you might want to explore what the long-term effects on your household might be as IF the medical bills bankrupt your husband and have a very serious impact on his future career earnings and savings for retirement, etc. You can often secure an appt. with an attorney who specializes in disability benefits to discuss your situation. ONE meeting is well worth the cost as the long-term costs and life issues are massive.
I would really, really, really LOVE more interviews with Imani Barbarin. Or have her co-host interviews with others. Honestly, this is some of the most relevant, but hidden, educational content that I've seen in such a long time. This is so serious, but she is so blatant and she has such a broad range of knowledge through her communications with the general disabled populace that she was just such a wealth of knowledge. We need more of her than just one hour. This is such a wonderful interview. Truly. Thank you both for your honesty, frankness, and openness on such a difficult topic (which it shouldn't be difficult to talk about because it's just diabled ppl's DAILY LIFE STRUGGLES!)
Please more Imani and disability content! I have watched almost every single video on TFD and this is my favourite by far. I facilitated a session with Imani at an online conference a few years ago and just about died fangirling. Imani is incredible! The intersection between disability and money is massive - would love more discussions about employment as well, and particularly the costs/benefits of so many of us disabled people having to end up being self employed due to inaccessible and discriminatory work practices. That is a huge aspect of my own financial situation and some of the challenge in trying to implement a lot of the other financial tips and strategies I've learnt about on TFD.
Seconded! Please! My biggest fear is my chronic and mental illnesses rendering me unable to hold a full-time job with benefits. I'm incredibly blessed in my situation right now and there are so many people much worse off than me and shining a light on how this country and society is oppressive to disabled people and anyone non-white, hetero, cis, etc is so so so important to enact change.
I’ll second more disabled content. Especially as it pertains to housing (because at least in England if you move in with your significant other those benefits might be taken from you - and as a result so many couples can’t live together.)
"People don't think we should exist" That hit me. I felt that a lot, especially since the pandemic. Disability does equal poverty. I started a business when I was 24 and diagnosed with a 'false brain tumor' that's debilitating and life long, put a actual hole in my skull, because my other option at that age, pregnant, was disability benefits of about 750$ Health insurance is impossible, over 1200 a month for just me. I make about 30-50k a year, depending on my health and ability to work. When I got pregnant again a few years back, I had to take only enough orders to stay in poverty, 2300 a month, so I could have high-risk pregnancy health care. A month after baby is born, I have to tell my neurosurgeon that I can't plan ahead anymore visits, because I have to go back to work and get back out of poverty. I can't have both.
I feel like some of us who are disabled see the issues with the system and are frustrated but at the same time have lost hope for it to change within our lifetimes so we give in as much as we physically can to the grind culture because it does become “work or die” when there’s no safety net or room for what our society deems to be failure so what other options do we have?..
17:48 She hits the nail on the head. We live in a society where in order to "get ahead", you basically have to be born ahead. And for the rest - they say "let them die". For the past 40 years, there's been this vilification of those "greedy thousand-aires" who are "gaming the system", while we ignore the billionaires who are the actual thieves screwing up the system.
as someone from a country that has free healthcare, it always astonishes me how it works in the USA. the situation with financial aid isn't that different here. bureaucracy takes ages and we barely get any help or money (if we get any at all), but at least we know we won't go bankrupt if we need to go to a doctor (be it for regular checkups, treatment or an emergency). I hope things change over there, it just makes no sense at all
Even in the UK there are some astoundingly terrible issues for disabled people on benefits. Move in with a partner? "Congratulations you make too much money as a couple. Your work replacement benefits are gone. They’ll have to care for you now. That £210 minimum from PIP? Surely that’s enough to sustain you all month right?" Same if you get married. (Yeah, disabled people don’t really have marriage equality- I think the US also has this issue.) The potential for financial abuse or generally struggling to get by is incredibly high and nobody cares.
@@LadyAhro I'm not from the UK either (in my country it's even worse than that), but I've heard about this because I follow several disabled youtubers from there. if I'm not mistaken, Jessica Kelgren-Fozard has spoken about this before. basically no matter which country we live in, us chronically ill and disabled are a nuisance. we're legislated into financial hardship, if not poverty, because we live in a capitalist society and capitalism is ableist by nature.
THANK YOU CHELSEA! I have chronic pain and SUPER severe IBS, Im lucky to have a partner that cares for me. My physical jobs made me cry daily before and after work. In my chronic health condition situation I also notice people around me are not aware of: - just because im mostly at home doesn't mean i 'cost less' I need frequent dr visits, supplements, etc - the journey to find a helpful dr is often expensive and lengthy -I still have family members judging my old clothes and lack of investment in clothes bc they forget I have to choose to have savings and drs or new clothes - how physically painful it can be to have to hide a disability from an employer to keep a job (an employer that claims to accept all) -how scary and stressful it is getting judged for not being able to have the vaccine after having severe reactions making my situation and independence level worse -the guilt it is to have a partner w so much responsibility physically and financially (specially when Australian government doesn't wanna help you because your partner occasionally goes over the threshed-hold because of doing overtime to provide all I need (on top of working and studying full time)
not only in the US. I live in Australia, lots of people have it way worsse than me and still hard for me here I have chronic pain and SUPER severe IBS, Im lucky to have a partner that cares for me. My physical jobs made me cry daily before and after work. In my chronic health condition situation I also notice people around me are not aware of: - just because im mostly at home doesn't mean i 'cost less' I need frequent dr visits, supplements, etc - the journey to find a helpful dr is often expensive and lengthy -I still have family members judging my old clothes and lack of investment in clothes bc they forget I have to choose to have savings and drs or new clothes - how physically painful it can be to have to hide a disability from an employer to keep a job (an employer that claims to accept all) -how scary and stressful it is getting judged for not being able to have the vaccine after having severe reactions making my situation and independence level worse -the guilt it is to have a partner w so much responsibility physically and financially (specially when Australian government doesn't wanna help you because your partner occasionally goes over the threshed-hold because of doing overtime to provide all I need (on top of working and studying full time)
as someone who works in healthcare...one word "insurance" they denied a patient a line because they were "outpatient" ie they were in a different area of the hospital because we were literally full and had no normal beds...because that they said "lul nope they not allowed to get the line" which is utter bullshit
As a female Indigenous medical worker, thank you for this! It's an iceberg, to be sure, but more chats like this will bring better patient care! EVERY patient deserves to feel safe, to be satisfied with their care, and TO BE LISTENED TO.
The problem is that it is hard for someone with no medical training to know the difference between "the doctor listened to me but just decided that I was wrong" and "the doctor didn't listen to me."
I’m disabled and this is my first TMD where I went from “Wow! I’ve never heard of this topic” to “Oh my god how have people not heard of this” 😳 It’s surreal. This is what we’ve been saying for decades. She just condenses it so well for this episode.
I love TFD and I've been following since the beginning. While I've never been able to take a lot of the advice, especially around investing and savings, I always watched because it's the information we weren't taught in school presented in ways I can understand, and can even be advice I pass on to others. However, I am disabled so having a financial safety net like that is not/will not be an option for me. Yes, it's terrifying. Seeing the wonderful Imani on here speaking her truth and giving facts about what it's like for fellow disabled folks is THE FIRST TIME I've ever felt seen by TFD. Please bring on more guests with varying backgrounds/financial situations. These are stories that need to be told.
I feel like I could watch at LEAST 5 more hour long interviews like this with Imani. She's so knowledgable and like she said, having a disability impacts every part of your life. You could pick any one of the issues she talked about today and expand on them easily.
Also, many companies and organizations say they promote hiring the disabled but in reality they actively discriminate and do not hire you if you are disabled! It took me 5 years after I applied for disability to get approved.
I work at a legal aid firm. We've had people inherit homes and lose their benefits, even though the disabled person didn't know they were part of the person's will. Our staff have been able to negotiate with SSDI. So many others can't.
My mother has been dragging her feet about getting any kind of will, etc set up to make sure I am not destroyed financially after she passes and her house and car land in my lap and get me cut off SSI and possible a reduction in SSDI. With my medical expenses it would be gone in a year or less.
As someone with hypothyroidism, adrenal insufficiency, PCOS and hip dysplasia, I am so tired of the" beans and rice" rhetoric because it destroys my health. Sure I could live on macaroni and cheese and other cheap foods,but then I wouldn't be able to go to work because of inflammatory reactions. Taking care of your health is expensive and that includes food!
Ik Dave Ramsey says that all the time. It is code for punishment, or some see it as paying their dues. My mom says she did that getting her doctorate. Well, she had genetic health issues then, and they are worse now, and has many new lifestyle issues that sarted in her 40’s. Eight years of being malnourished has long-term effects, and or can influence pre existing or predisposed issues.
@@borkbork4124 "what you ignore now will demand your attention later" I think so many people in their older age have health issues because of poor diet and yet it's encouraged by the so-called Financial gurus; they completely ignore the fact that the greatest wealth is health.
Completely agree. I use to work for Amazon and they promoted us having healthy nutritious snacks however, your vending machines have none of those options. Also, the cost and shelf life is vastly different which is why we have more access/availability for non nutritious snacks.
@@borkbork4124 Ok rice and beans in itself is not punishment. Latin community has eaten it for days without it being a punishment but I understand that people with disabilities should not have to be forced to eat based on necessity only
It would be great if you could have Imani back. She is so knowledgeable, and you guys definitely covered a lot but I definitely feel like this interview barely touched the surface. This may be one of the most profound topics that affects finances.
I’m so glad this topic is being covered I live on SSDI as a disabled single mother and I’m thankful for what I have but it’s a struggle in areas. I am so happy to see this speaker, I follow her on Instagram and she is a great advocate on this topic and provides such a great voice about our struggles within the disability community. I pray that she continues to fight but also have access to restful and blissful experiences to self care. Salute!!!! 😇🥰😇
Haven’t even watched the video yet and just wanted to leave a comment. So few able-bodied people talk about disability in regards to money in a good faith way, and I know you will on this channel. Thank you!
Speaking to your point on whether there are disabled people on the cusp of disability who are forced to choose work over taking disability benefits: I'm recently disabled as a result of long covid issues and am also graduating college and looking for a job. I swear ever since I stopped disclosing that I have a disability I get more call backs on my resumes. Its been an incredibly frustrating process, but I doubt that government assistance would be any better as while I struggle to do every day tasks only around a fourth of people with my condition are considered sick enough to even potentially qualify and I'd rather not go through the hassle.
as a disabled person myself, the only "gaming of the system" I can do is having friends who make enough to assist in supporting me enough that I have spending money and making sure we all have food by saying I prepare my own food all the time... I am a picky eater though so that's not far from the truth but we generally have group meals that everyone will enjoy to save money even more.
I had to "game the system" for a while by doing like $50 p/w undeclared cash income to survive by actually being able to afford the medication that keeps me alive
pretty much this, family is just sending each other gift cards, and pre paid cards and cash to those of us on disability or stocking up food pantry when visiting. If you're not careful, loan sharks take advantage of you needing your money.
Thank you so much for this episode. As the sibling and caregiver of a disabled young man I learned a lot, found any ally, and felt supported in my work with my brother and gained knowledge in advocating for him and for myself.
My husband is legally disabled and he's "lucky" and has it well off compared to many people. I work for a living. His job shutdown and that was his push for disability with 10 years worth of medical paperwork for his disability. Got a lawyer and fought the government for 18 months and he won. He gets all the benefits of the free healthcare plus my healthcare that I pay for as he's on my health insurance. Being disabled is not easy like people think and is costly. The government screws over a lot of people in need of disability but can't get on because they're working. Of course they're working, they need shelter, food and water. They don't have anyone to give them these things so they can sit around doing nothing for the government to decide they really can't work. My husband had me for that. Then the health benefits from the government that they pay for made me laugh. The part that you pay is the same amount I pay for, but I pay for two people AND I get better benefits PLUS cheap prescriptions too. My husband got lucky and is one of very few legally disabled people who actually have it made.
My brother is on SSI and one time he made $200 for being in an adaptive fashion show. As soon as the $200 was reported, he got a bunch of letters from SSI about a reassessment of eligibility and a reduction for that month. A ton of paperwork was required to reconfirm his eligibility or he would loose his income.
Sounds like SSI. I was on the program before they put me on SSDI. Gotta love the programs that keep you below the poverty line, and penalize you for things out of your control.
I became physically disabled due to COVID-19 for almost an entire year, as of 2020, and I now have chronic issues because of it. I've never realized how horrible the United States treats disabled people, and how few options they have. Can't work? Well now you don't have healthcare to help with your disability. Not to mention money to pay your bills. Thanks for talking about this subject, Chelsea!
My mom became physically disabled because of COVID-19 as well and it's a goddamn nightmare. The system is so slow going and it takes forever to get anything done.
I’ve been disabled since a teen and my mom was disabled young. I tell the well ppl you know the monsters that’s talked about under the bed. It’s actually the medical field the doctors and nurses. You don’t know horror until you’ve experienced the abuse and neglect from the medical field.
As someone with an invisible disability that has mobility and pain issues that are not apparent in the short term of a interview I have definatly lost a job disclosing too soon. I made it to the second round of interviews and the interviewer was going over the next training classes to see when my schedule would fit. I disclosed my disability and suddenly she noticed that none of the work terms I had done in collage was really retail and this needed at least 6 months of retail so they would have review and get back to me. A week later I got a letter in the mail stating that I had not been given the job because of my lack of work experience, experience they had known about since before the first interview. It was the one an only time I ever got a letter telling me I hadn't been given a job. Thankfully I'm quite blessed now and fully aware of it. I've worked from home since before Covid with pay that would be good in a big city and imposable to get in the rural area I live in. I'm good at my job and find it very rewarding. Yet I know as I get older my condition will get worse and I will be looking at surgical solutions. When that time comes the 3 steps down from my front door won't be doable and my current bathroom won't be usable. I have a good job and pretty good insurance but am very aware that when this reaches the point where I have to deal with it everything could go up in smoke even if I plan as much as I can.
Sorry to hear that. I only have qualifications for physical jobs and was crying before and after work from pain. Started losing shifts once I couldnt do many of the physical things.. feel a bit lost on what to do now.
Dang. Thanks. What a great guest. I have a condition that limits my ability to work full time. I’ve been slowly wiping out my savings and I’m really worried about my future. As someone who had a pretty good career for 30 years it is scary. I have only one child and he needs his income to save for a house. It breaks my heart that I may have to ask him for help in a few years. Our system needs to support people with health issues more.
Something that upsets me about the situation around type 1 Diabetes is how it is defined. My hubby is a type 1 diabetic and employers will tell him it isn’t but then will not hire him or fire him when they find out. Including one who fired him, which I can’t name, that trapped him (not me) into signing an NDA to get a severance as they knew he could sue, but also knew he couldn’t afford to go without the two month’s pay upfront to get nothing while suing. They 100% banked on him having no option but than to just take it or legit die from not being able to afford insulin while fighting it.
There is something called a Special Needs Trust or Supplemental Needs Trust that disabled people can set up to have assets above their asset and income limits. If you are a disabled person and inherit money or something like that, you can set up one of these to avoid losing any benefits like Medicare, Medicaid, Social Security, SNAP, etc. It's a bit complicated to set up, you need a lawyer and then you need a bank to set up an account, but if you are a disabled person, it is totally worth it if you want to be able to have money. Basically this is like how rich people use offshore accounts for tax evasion, except it's a technique disabled people can use that is perfectly legal that we can use to qualify for means-tested government benefits without giving up all your money (i.e. without doing a Medicaid spend-down or something like that). Technically the money isn't yours anymore if you do this but instead belongs to a trust (a legal entity) run by trustees which is contractually obligated to use all of its money for your benefit but not in a way that would ever cause you to lose benefits. So you no longer have direct control over it. But you can still spend it on things. Although this is a little complicated and involves having to call the trustee to ask for permission to buy something and then getting sent the money. Anyway, it would be great to have an episode where you have on someone who knows about Special Needs Trusts or Supplemental Needs Trusts for disabled people. As is typical for our government, instead of solving the problem of means tested benefits being means tested to the point of ridiculousness and forcing disabled people into poverty, they instead created a type of legal loophole allowing people to avoid means testing that works for people who know how to get good lawyers and stuff like that. So ironically the people most likely to be able to successfully navigate this system are people from wealthy families who can hide the money of disabled adult children in these trusts and make them on paper appear to be poor and qualify for Medicare, Medicaid, Social Security Disability, SNAP, etc., while still being able to have a wealthy lifestyle. And the beneficiary doesn't have to pay taxes on any of it (the trustees do, though). And the money in it can be invested and everything. And if you aren't careful about how the contract is written, the trustees can steal the money from the beneficiary by changing the beneficiary to themselves or something like that. That is a difference between revocable (modifiable) and irrevocable (unmodifiable) trust, with revocable the contract can be changed but with irrevocable it can't be. And there are also both first-party and third-party Supplemental Needs Trusts. Third-party ones are better because with first-party ones, by law, once the beneficiary dies, any remaining money still held by the trust refunds the Medicaid program of every single penny Medicaid ever spent on the beneficiary and only after that can the remaining funds go to people in the beneficiary's will. With a third-party trust, the money is safe from being confiscated by government programs like that. On the other hand, a first-party trust has the advantage that the beneficiary is the same person as the trustee and the beneficiary controls the trust directly, at the cost of having to pay Medicaid back all that money when they die of course. But maybe a bit more convenient while you're alive. Anyway, this is like, a huge loophole allowing people to stay on means-tested benefit programs if they have too much money by storing the money in this special type of account/legal entity that is not technically them so it isn't technically their money. I highly recommend all people on means-tested government benefit programs look into this if they're looking into ways to make money without getting kicked off the programs. It might even be possible to have a job pay money to this trust instead of directly to the person, if the employer is flexible, but I'm not sure if that's legal. It might not be. So you should have an expert on to talk about this because it's very useful for disabled people who need to be on Medicare, Medicaid, and Social Security but it would be good to have accurate information from someone who knows more than I do about this. I'm just getting one of these things set up for me and it's a very long and complicated process involving meeting with a lawyer and someone from a bank and all these people are very busy and difficult to get appointments with and the trust document itself is maybe 6-7 pages long of legal text that is pretty clear what it means. But it takes months to set these things up, it seems.
It's good to know, but it's so infantilizing that such a thing is needed just to be able to retain what you already own and get the assistance you need
Another thing, my HUD apartment building has a wonderful computer center designed to enable those who live with low vision, blindnes, and those who have to use voice dictation to access computers, and tablets, along with training. When the management recently hired ambassadors to help train residents who received free devices how to use them, the qualifications included MUST HAVE A CAR. They excluded me and others without a car from doing this job, which means our expertise was complete ignored. We would have been expand the views of many computer users to the many accessibility options available that could help them do things differently, instead of assuming they don't exist. For those without disabilities were often NOT TAUGHT about these matters.
Imani was amazing and she hit so many things that were wrong with America. I have witnessed how disability forces people into poverty and it's honestly sickening. I learned a lot and we can only hope for the best. Please do more pieces regarding disability because they're so often pushed aside. Thank you for this awesome interview
Wow I'm so glad to see this topic. I was signed off work due to my health and haven't managed to return to work yet almost 10 years later. I've been working hard on stability to return to work to pay off my student debt and buy a house. Hearing people talk about their high income jobs, savings, houses etc tends to make me feel depressed and panicky because it seems so out of reach. People with disabilities and long term health problems are so often excluded from conversations about financial independence. We're basically told we're ill, to get benefits, disappear and stop trying. And the way we're not allowed to save to qualify for benefits is one of the worst parts of it and is a nightmare that keeps us trapped. A lot of people also don't realise how fragile health is, and how you can be working full time one day and disabled the next day. I disagree that it's about racism, as we have the same issues in the UK where we have a different history including around race. Here it's very much about class, regardless of race. People like to look down on poor and disabled people and think that we're in this situation due to poor choices, because it makes them feel safe from the same fate. When really a lot of it is about luck. I'd love to see much more done to help disabled people out of poverty into financial security.
Imani you are amazing!! I too have Cerebral Palsy and Social Security Disability is a horrible system. It is designed to keep us poor as you say. I work a full time job but I worry everyday the day may come I can’t work and I will have to go back to the system that has attacked me for three overpayments to the tune of thousands and thousands of dollars. I have had to fight the very system that is supposed to help us. Completely sad. I want you to know you are smart articulate and beautiful. We have to be the voice for those that don’t have one.
I learned ASL during a210 stay in county jail, because my bunkie was 100%deaf. Without any advocacy, translation, or even legal assistance in there - she taught me everything. ABCs, 123s, how who what when where why's and so on.... I became so proficient in sign language that I was transported WITH her to the main jail "medical" division from the minimum security facility in the early morning hours (multiple times) to translate for her because of the language barrier. It really bothers me that there is such little assistance for people with disabilities. I have made an effort to maintain our friendship even outside of jail....I'm thankful that this problem becoming more and more recognized and I'm optimistic for the future...
As a fellow deaf person, thank you for learning and then helping her out. This type of thing is terrifying to us knowing that jail and prison is a life threatening situation for a lot of deaf people who end up in the system.
The words 'grindng/hustling' ..When it's the job doing to you, it makes me think of the workplace abuse called 'speeding up' a term I read in the book The Jungle about the workplace firing a person the moment the worker burns out.
My gosh guys I’m so glad I found this video, I was actually on SSI receiving a pitiful 693.58$ per month in the very expensive LA area and after a quick 6 months I said forget it and I got myself a job, while I am disabled, fortunately I can work, so I blew past that 2,000$ limit and they cut me off😒
Paratransit is awful. I'm autistic and adhd and qualified for it and wow. Must call the day before. Must be ready for them to show up - up to an hour before your pickup time. The travel time is 1.5-3x the amount it takes y regular transit or cars (which keep in mind most regular transit is still a longer time than cars.) It is SUPER bumpy.
imani's tiktok is a must follow, always full of rich and thoughtful content, not only about disability and race but also online communications in general!
This topic is very eye opening and hits close to home. I have relatives on disability and I see firsthand how scarce resources can be for them especially on a very limited income. It's unfair to categorize people on disability as trying to game the system because there's tremendous sacrifices they are making to recieve support. Anyone can become disabled in any given circumstance so this is information is valuable and humbling.
No, that's $2000 MAXIMUM in TOTAL assets. In other words, if you're on Medicaid, it's against the law to have an emergency fund that would actually cover a moderate-sized emergency, like losing your source of transportation and having to buy a reliable used car, or getting a leak in your roof. If you scrape together more than that maximum, then it ends up being paid to your health care provider, who will make sure you always owe them more than you can pay so they get any nickel that trickles into your possession.
We have to stop picking and choosing what disabilities are worthy of support. One of the scariest things to witness during the pandemic was watching the same people, media and institutions that encouraged and promoted the public health initiatives to ‘protect and support health’, dismiss, shun and attack the individuals that were disabled from the vaccines. It shouldn’t matter how or who is affected by disability, how rare or common the affliction is, or whether or not their disability aligns with popular political preferences, everyone should be treated with kindness and respect 😊🌸😊
YES!!!! Thank you! I know people who had it worse but the vaccine affected my so bad, im on month 4 of muscle issues, vision issues, heart issues, chronic pain issues etc. Im lucky to have my partner caring for me because Drs surely dont wanna report my issues which means I wouldnt even have an official argument about my symptoms!
@@rba4377 hope you start feeling better soon though beautiful 💜! Also most of the symptoms you mentioned are actually pretty common amoung the rare side effects, so not only are doctors required to report them, there are many doctors and researchers trying to treat them and raise awareness and funding so definitely look them up online and try go see someone. Often times with autoimmune complications people don’t experience them until months or years after the initial issue that caused it so I wouldn’t worry about the time to report too much. But as some inflammatory conditions can go on to become permanent if not treated early I would def try finding a doctor that you trust so that something as simple as a vaccine doesn’t go on to cause a major lifelong issue. Hope that helps a little and truly hope you’re feeling well again soon 😊
@@lunar686 thank! very rare to find kind words regarding this issue or even people that will say anything at all.. most people in my life choose to pretend nothing is happening. Anyway, seeing my Dr again this week and have my integrated Dr booked as well. Thank you so much, all the best
@@rba4377 hope everything goes well at your doctors visit 🌼. From what I know, I think a course of anti inflammatory, corticosteroid and immune suppressants generally bring most of the adverse events under control but most likely your doc will recommend bringing in the expertise of a rheumatologist to help out. Lol and don’t stress too much about people not understanding easily, I think the pandemic kinda drained everyone’s mental and emotional bandwidth, so people easily forget that adverse events aren’t just normal, but an expected effect of all vaccines or medications
Thank you so much for this interview. Being chronically ill, so much financial advice is just way out of my reach, and it can feel pointless to even think about it
This was such an illuminating and sadly, horrifying, episode. I'm not American, so I didn't know the details of how hard it is to be financially stable and independent for people with disabilities in the U.S. The fact that the system seems to somewhow force people with disabilities to stay in poverty in order to receive basic medical health is just...is enraging!
I already loved Imani on TikTok; loved this episode. I don't think a lot of people realize how many people are disabled or chronically ill on a day-to-day basis. I wonder if you guys could do a mini-series or more videos with Imani on the cost of disability/chronic illness or how to navigate that. Although I don't think I'd benefit much because it would have to be, by its nature, very US-centred, I'd still love to watch more conversations on this. Jessica Kellgren-Fozard, Molly Burke and Hannah Witton were maybe my first steps into disability-awareness content and from then I've tried to follow a diverse group of people in this community and it has helped me a lot with closed ones or looking at the world around me and every day interactions differently. Molly Burke would be a great guest for a US perspective. A few things might be adaptable to different countries, perhaps, but it's always interesting, The best part of your podcast is the thematic variety; you guys have such a diverse group of people/industries; every week is a pleasant surprise.
This was such an insightful and interesting conversation. As a paralegal, I work for an attorney who frequently works with the disabled when they will be inheriting or receiving large amounts of money. We typically funnel it into pooled special needs trusts. This allows the recipients to use the money, but avoid losing the public benefits for which they rely on.
I was diagnosed with hypermobile Ehlers-Danlos syndrome, as well as a few of the common related conditions in 2020. In a lot of ways it was a victory because I had fought for a diagnosis for most of my adult life. However, coming to terms with the fact that I have a genetic condition that is permanent during the middle of a global pandemic has been really mind-bending. Feeling shut out from society and mocked for being high-risk and not wanting to die has been tough. Knowing that many people are unwilling to be inconvenienced so that people like me can live and participate in society has made me do a lot of soul-searching, especially when some of those unwilling people were family and friends. Thanks for having this conversation. It made me feel seen and valued.
Just got it diagnosed myself, after having had 13 surgeries, dealing with knee subluxation, arthritis, a TBI plus migraines and dead teeth from a fall.... all issues I could have potentially stopped if I had been told as a child of my EDS. :/ Also got diagnosed with FND with my nerve issues. Really makes you have to get in touch with yourself.
Thank you TFD for bringing different perspectives. I learn so much from all these beautiful interviews. And thank you for being respectful with your your guests. Thank you Imani
I’m chronically ill. I have had 3 surgeries in the last 9 months. And I could possibly have another surgery this year. I’m borderline poverty. This made me feel seen.
You can tell Chelsea is very uncomfortable and out of her depth with this topic. Thank you. This is a conversation that needed to be had. Hopefully TFD will hire some disabled writers so these perspectives can be brought onto their platform.
If you assume she is able bodied, yes, but you don’t know that, or if she has close disabled people in her life. It’s a good point you make but I think that these types of conversations between different types of people are great, just like conversations between races, religions, etc it helps just share understanding.
My single mother was permanently disabled at 61. It was hell. We had to make ourselves poorer in order to qualify for help. It was an awful experience for not only her, who couldn’t move her entire left side anymore, but for the entire family who had to help pull resources together, rearrange our lives while we waited for the assistance, which still wasn’t enough to take away the burden. This current system is crap and there’s no way for every person to plan for their ‘retirement’, when they could be disabled at any time and then their retirement would be spent.
Obviously there are no silver bullets, but I can't help but feel like a UBI would address SO many of the issues touched on in this episode. No more means testing means that people don't need to jump through hoops to get the money they need, don't need to worry about losing their benefit if they make even a few pennies too much during a month or are caught holding a little extra money outside of a special account. Yes, there'd still be issues with making things accessible and addressing how a lot of accessibility aids are stigmatized even by those purporting to be 'on the left', and by itself, UBI wouldn't address the chronic healthcare needs of many disabled people (hence why universal healthcare is also a strong need!) but I can't help but feel like these would ultimately be something like curb cuts: a benefit created to improve accessibility for one group that ended up making the country better for pretty much everyone. There's just so many ways in which doing the right thing for disabled people could help everyone, and we're really just making the country worse by not admitting that we *all* need help sometimes, and that even those of us who would never directly benefit still would benefit from living in a society that values everyone, not just those who are most valuable for the wealth extraction priorities of capitalism.
I'm really happy that you interviewed Imani, Chelsea. She's a real leader in the disability rights community. Just please, please, please just call us "disabled people," not "those living with disability." We're proud to be disabled, we don't shy away from identification with the word. On a similar note, I'm disabled, but I'm technically "able boded." (I'm neurodivergent, not physically disabled.) Therefore, "able bodied" isn't the opposite of "disabled." You could just say "nondisabled people" or "abled people." Anyway, rarely are DISABLED PEOPLE asked about disability matters, so thank you for this.
Who said you represent all people with a disability? As a disabled person, I and many others prefer to be referred to as living with a disability, as my entire personhood is not defined by my disability.
I'm ND too, but I know this preference differs from person to person. Chelsea's usage here is the most inclusive to different perspectives IMO, since the usage you're proposing has a much deeper stigma attached to it, historically.
I absolutely love that this interview happened, and it was so informative, but I am begging TFD to actually caption their videos?? There is so much irony in struggling through inaccurate automatic captions on a video about disability.
Thanks so much for covering this topic! I am Disabled (with a Capitol D meaning I find pride in this Identity and label) who has in the past been ON disability ( and yes it’s important for abled bodied people to know/learn that being Disabled and being ON disability are NOT interchangeable.) An important note; those asset limitations include your spouses income and assets. so in reality, disabled people do not have marriage equality.
I did not go thru all the comments to see if this was already mentioned. I believe it's a federal pol8cy but in Minnesota if you are "certified disabled" you can save money in an ABLE account" to be used for future necessity purposes -housing, transportation. Education, etc - and it does not count against the asset limit for benefits.
My condition recently worsened and I have lost the ability to use a regular vacuum cleaner so, my family got me an iroomba and it helps SO much. I'm so grateful for such a supportive family ❤️!
This was a wonderful conversation. I first started following Imani on TikTok and really appreciate seeing her view and learning more about the roadblocks disabled people face in every facet of American life. We have to do better.
This is my favorite video you’ve ever made, and I’ve been a fan for years. Thank you. Thank you for bringing light to these issues , and not by preaching about it from some pedestal, but by having a real conversation with a leader within the community! 10:47 I “hid” my disability (aka didn’t ask for accommodations or reveal my diagnoses) prior to the pandemic , due to fear of not getting hours at my job. I’d seen my boss not hire someone once, telling me in private that it was due to not being able to schedule them as much as needed due to their disability. Not only was what she did illegal, but it set a fear inside of me that lead me to hide my own disability from most people in my life, unless I absolutely *had* to tell them. The pandemic is what helped me find my voice and begin speaking up about living with a chronic illness. I just wish I’d found my voice years sooner. This video and conversation helped me feel so seen and heard and I truly hope it sparks more movement on the issue.
The only thing that separates me from you is luck and time... look around, this is your retirement plan." This right here. This should be THE argument even for the most selfish in our society. This WILL be YOU at some point in your life if not by circumstance, then by age. Do you want THIS garbage system being what you have to work with, or do you want something better?
I've watched the financial diet, and Chelsea for a long time, but never felt like anything you mentioned applied to me, because I am a struggling disabled women who is in the system and is limited to the $2000 in assets on SSDI. I can no longer work outside the home because of the extent of a surgical brain injury that I acquired while trying to rid myself of chronic epilepsy due to a birth defect. What Imani mentioned about the difference between able-bodied persons and us so resonated with me. Unless you're independently wealthy and can afford in home care even without health insurance this is the system you're going to have to deal with at some point in your life. I struggle to find something I can do because of the nature of my disability and that I've suffered from it since childhood. I was never able to retrain much of anything in school because of the meds I had to be on as a child, so my grades were too poor to qualify for any kind of scholarship so no college. I've been a subject of the system with very little hope to break away from it. My illness is also hidden unless I shave my head and let people see my gruesome scar, which I know no one wants to see. So I cover it up, and when I grew to sick to pretend being well, I was forced to leave my job in retail. I was able to marry but we have to keep our accounts separate, and if not for my husband's help I would not have been able to try what I'm trying to do now. I'm a content creator, with a sewing channel. Sewing being the only real skill I have. Sharing what I know being the only cost effective way to use it. In a world and country that considers itself so ahead of the curve, I should not have to struggle and sacrifice and barely make ends meet this much. Thank you for featuring this topic, hopefully it will make some difference, but not holding my breath. Since they review my medical eligibility every couple of years seeking to cut off my benefits if they see improvement, which they never have, cause... my left frontal lobe is gone, and that sort of thing doesn't grow back, just FYI. #epilepsywarrior
@Dazed_and_Amazed sorry, should have clarified better, I can't have more than $2000 in my checking and savings combined. Which makes it impossible to save.
Yes yes yes yes YES to this interview. As someone with a limited capacity to work because of (invisible) disability, I have watched so many TFD videos but often thought "lol, not for you though. You're not earning enough for this thing." I have adhd and and while not physically handicapped, I still find lots of things really hard, burn out quickly and have very bad mental health dips. Can't imagine how much worse all that must be with phyisical difficulties also, and with living in the US. Great interview!
Please be careful of saying "born in the wrong body" when referring to disability. Many people with disabilities don't feel like we are wrong. It's society that is not built for our differences.
Yeah born in the wrong body is definitely gross to me… I have ADHD and other forms of neurodivergence but that doesn’t make my “body” or brain lesser than, just different and not as easily adaptable to the demands (lots of distractions, advertisements, a ridiculous healthcare system) of modern society
@@serenarobak3640She is talking about disability, not gender. Either way, it's not a great way to word it and the original comment was respectfully suggesting she is careful with that.
I think it can be inferred that within the context of the conversation, this phrase was meant to be translated as, “born in the [what society deems to be] wrong body”.
I live in Mexico, and in the city I live in, there is great disability infrastructure. I noticed it right away. Ramps everywhere including on the sidewalks and most popular stores are on ground level.
A 3-6 month emergency fund can be a very different number for much of the disabled community than for the non-disabled community & between overpayments, $841 ssi income maxes, $1,350 ssd income maxes, needing to restrict income to keep Medicaid because private insurers don't provide needed services; the system makes life extremely difficult for people on SSI/D
@Frankenstein Real $841 is the maximum SSI payment for 2022. However, this does not necessarily mean that it is the person's only income. For some, it is, especially people who have been disabled all their lives and could never work and pay into the Social Security system. $1350 is the 2022 maximum monthly payout for SSDI (Disability Insurance, for those who did pay into the system). I don't know if J.R. revised the original post after re-checking the numbers, or if you incorrectly said the amounts were inaccurate.
@Frankenstein Real I think conversations about Disability income are often muddied by the two separate programs, SSI and SSDI. It seems to me that government employees have a tendency to assume that everyone on SSDI also receives SSI, while many disability advocates like Imani are addressing mainly the situation of people who have never been able to work and therefore receive only SSI. I often feel frustrated when I try to get accurate information about my situation as someone who receives only SSDI, not SSI. Just to clarify, and don't feel you have to disclose this if you don't feel comfortable doing so, when you say you make above the $1350 amount, do you mean on SSDI alone, or is that a combination of things, such as SSDI and SSI? The Social Security website makes it sound as if $1350 is the maximum one could receive on SSDI alone.
@J.R. @Frankenstein Real I agree. I think that what I may have been misunderstanding is that the $1350 cap is the maximum you can earn by working while on Disability (after your Trial Work Period, during which there is no cap on earnings), while the maximum amount paid by SSDI is much higher, $3345 (but you have to have to have been earning well during the years you were working to get anywhere near that much). For those whose SSDI benefit amount is fairly high, there is a significant "financial cliff" if they overcome their disability enough to earn $1350 but not enough to replace their full benefit. "Great, you can work now, so now you get to be destitute."
I became disabled at 23 and unable to work at 25. Because I went on ssd and ssi so young I receive almost $500 a month. I can’t have more than $3k saved or I lose SS. If I lose SS, I lose medical insurance. My life is awful and I can’t increase my QOL
I feel this. I'm 22. Became disabled officially 2 years ago. I get 30 dollars a month right now.. 60 if I move to a facility but I've been in the hospital for a little over a year. I literally do not know wtf I would do if I was completely alone. It's just horrific. I'm sorry you're going through this too.
I am a LTSS waiver service case manager in Philadelphia. Do not get it twisted, these services are not just for the elderly. If you or someone you know are in need of waiver service outreach the County Assistance Office to apply. This is such a great topic that needs to talked about more.
ok now that I'm calm.... this is THE EPISODE I have been waiting for!!! Imani is so right, disability is always the last intersection to be considered most of the time, especially when it comes to personal finance. My doubly disabled self is so thankful for TFD, Imani, and this podcast!
Thanks so much for sharing this info. The fact of the matter is if you get a chronic illness (many which require very expensive medicines to stay functional) you will be poor in the US. There’s literally people with chronic illnesses who have to give up working in order to get disability so they can get government healthcare to pay for their medications. Please have Iman on again!!! She is fantastic and such a great voice for the injustice and toxicity of our systems.
"The only thing that separates me from you is luck and time... look around, this is your retirement plan." This right here. This should be THE argument even for the most selfish in our society. This WILL be YOU at some point in your life if not by circumstance, then by age. Do you want THIS garbage system being what you have to work with, or do you want something better?
Amazing comment!!!!!
👏👏👏
Except the truly wealthy/powerful who currently run our system believe, and indeed may be right, that they will NEVER end up “like the poors”. Even if they lost 99.9% of their wealth, they would still have enough money to get themselves whatever they need.
@@JamesDecker7 this is the truth. Eat the rich. A murderous revolution is the only way to end this. Ngl I doubt to see it in my lifetime. I’m 26, as long as we have internet and enough of a roof to feel like we will lose something by risking to fight the system, we will never fight the system. It’s too scary for a majority of people to give up the bare minimum they get for an even less guarantee.
OH MY GOD YES. I had to stop the video when I heard that, because it's absolutely true.
As a mildly disabled woman I was internally shouting “Amen” over and over. But as a white woman I was horrified to realize how ignorant I have been about how race plays such a vital role in the disability discussion. Thank you so much for opening my eyes. I have a lot of research and introspection in my future.
Start to realize that in America race plays a role even in the type of bread you eat, it's insane, don't know how people can live like this.
When I was 20 years old, I attended a rally to support universal healthcare attended by doctors and nurses and the speaker was a 70 years old doctor and said that when he was 20 years old he attended a rally for universal healthcare. He said he was saddened that in his lifetime there still wasn't any universal healthcare.
Wow, that sounds like an incredibly powerful experience. I hope that my generation can do better by everyone in our society than generations past.
@@FabulousSquidwardyes indeed me to
Universal health care is not so good it will mean ppl who can afford private will take up space on the government ins. Just ask Canada how that’s going ppl over there are dying too from long waits. We need something better then universal care we need good universal care and choice. So that ppl with money who can afford private ins don’t take a slot from someone who can’t.
I disclosed an invisible illness at a job interview to explain why I could only work a certain number of hours. They still scheduled me for like twice the hours I could do, When I brought it up my boss got mad. And it's like MAM I am not springing this on you out of nowhere...
They won’t even give me a job if I disclose my disability I’m going homeless with my child soon it’s so devastating.
@@boundariessetinstone5893 this is part of the reason why I hide minds so much. Because I'm terrified that I'll be forced to leave a job
Imani literally killed the virtual interview. Idk if it’s TFD or Imani’s setup, but this was the best interview not in the studio. No awkwardness, no phone disruptions, etc.
Literally?
Agreed 100%
*" The only difference between you and me is luck and time"*
If you saw me, you'd think I was a healthy young woman, although I'm blessed to feel 100% healthy...I'm a metastatic breast cancer survivor, much of what is stated directly applies to me, much of this applies to us all regardless of health status
God bless you Imani
"If your life matters less than your racism, then you deserve the health care system that we have." Damn. This might be one of the best interviews I've ever watched.
Thank you for this discussion, and thank you for including Imani. She's amazing.
As an invisible disabled person I'd also like to talk about "health and wellness culture."
Stop asking disabled people "hAvE yOu tRiEd YOGA?!?" like it's gonna solve all their problems.
Just. Stop.
Every time I get told to do a yoga I wanna downward dog my hand to their face til the offender is cowering in child's pose.
Yea, screw yoga
im so glad you brought imani on because the pennies that ssi benefits give disabled people is CONSTANTLY missed from every conversation about budgetting. the max budget (for even NY) is unlivable. llike at this point there is no way out of poverty unless my disability was cured or there was a livable universal basic income.
I had a double lung transplant at 18 years old right after high school. My doctors crammed down my throat the idea that I have to go out in the world and be normal. When I got my first job I was severely exhausted and almost passed out while working sometimes. I was an apparel associate at Walmart. I thought that this was just normal grown up working life. I ignored these symptoms until I finally switched hospitals. Within a few months I found out that my lung transplant was chronically rejecting. I felt pushed to work and try to live a normal life even though post transplant I was still never healthy enough to lead a normal life. I had another transplant a few years later and even then I felt pushed to work to make ends meet on top of SSI. This led to another acute rejection which is now chronic.
I lost my benefits when I got married. My medications, not including other medical care, are over $10k a month. I can't work because no one is willing to accommodate me. I have narcolepsy, Ehlers-Danlos Syndrome, systemic mastocytosis, ADHD, and I'm autistic. Wtf am I expected to do with all of this? I have medicaid, but thinking about having an income, an emergency fund, retirement account, or doing any investment is a joke. This was by far my favorite episode on the channel, and I've watched every video!
Did you know that you are going to lose these benefits once you get married? If you did, why did you get married officially?
@@kikiTHEalien yes, I got married because of religious reasons
@@kokitsunetora I am so sorry religion brainwashed you into thinking you didn't deserve benefits then jfc
@@skylarsaysstuff I wasn't brainwashed. It was a choice. I DO deserve those benefits (the government is at fault there), but I also have to live with my conscience. No amount of money is worth betraying your personal values
@@kokitsunetora I suppose many have asked you this but have you applied for social security disability or any other disability benefits through your former job (many jobs have long-term disability benefits built into their employment packages but there is a time limit to apply). Who is paying all of your expenses? Of course one needs the support from a doctor to apply for these benefits but getting it for at least your medication seems like a good idea. I think you might want to explore what the long-term effects on your household might be as IF the medical bills bankrupt your husband and have a very serious impact on his future career earnings and savings for retirement, etc. You can often secure an appt. with an attorney who specializes in disability benefits to discuss your situation. ONE meeting is well worth the cost as the long-term costs and life issues are massive.
I would really, really, really LOVE more interviews with Imani Barbarin. Or have her co-host interviews with others. Honestly, this is some of the most relevant, but hidden, educational content that I've seen in such a long time. This is so serious, but she is so blatant and she has such a broad range of knowledge through her communications with the general disabled populace that she was just such a wealth of knowledge. We need more of her than just one hour. This is such a wonderful interview. Truly. Thank you both for your honesty, frankness, and openness on such a difficult topic (which it shouldn't be difficult to talk about because it's just diabled ppl's DAILY LIFE STRUGGLES!)
Please more Imani and disability content! I have watched almost every single video on TFD and this is my favourite by far. I facilitated a session with Imani at an online conference a few years ago and just about died fangirling. Imani is incredible! The intersection between disability and money is massive - would love more discussions about employment as well, and particularly the costs/benefits of so many of us disabled people having to end up being self employed due to inaccessible and discriminatory work practices. That is a huge aspect of my own financial situation and some of the challenge in trying to implement a lot of the other financial tips and strategies I've learnt about on TFD.
Seconded! Please! My biggest fear is my chronic and mental illnesses rendering me unable to hold a full-time job with benefits. I'm incredibly blessed in my situation right now and there are so many people much worse off than me and shining a light on how this country and society is oppressive to disabled people and anyone non-white, hetero, cis, etc is so so so important to enact change.
I’ll second more disabled content. Especially as it pertains to housing (because at least in England if you move in with your significant other those benefits might be taken from you - and as a result so many couples can’t live together.)
@@shannon7646 YES!! Im only qualified on physical jobs, which i cant do anymore. Would love ideas!
YES!! Im only qualified on physical jobs, which i cant do anymore. Would love ideas!
YES!
"People don't think we should exist" That hit me. I felt that a lot, especially since the pandemic.
Disability does equal poverty. I started a business when I was 24 and diagnosed with a 'false brain tumor' that's debilitating and life long, put a actual hole in my skull, because my other option at that age, pregnant, was disability benefits of about 750$ Health insurance is impossible, over 1200 a month for just me. I make about 30-50k a year, depending on my health and ability to work. When I got pregnant again a few years back, I had to take only enough orders to stay in poverty, 2300 a month, so I could have high-risk pregnancy health care. A month after baby is born, I have to tell my neurosurgeon that I can't plan ahead anymore visits, because I have to go back to work and get back out of poverty. I can't have both.
Yes it is very sad but also very true🎉
I feel like some of us who are disabled see the issues with the system and are frustrated but at the same time have lost hope for it to change within our lifetimes so we give in as much as we physically can to the grind culture because it does become “work or die” when there’s no safety net or room for what our society deems to be failure so what other options do we have?..
17:48 She hits the nail on the head. We live in a society where in order to "get ahead", you basically have to be born ahead. And for the rest - they say "let them die". For the past 40 years, there's been this vilification of those "greedy thousand-aires" who are "gaming the system", while we ignore the billionaires who are the actual thieves screwing up the system.
as someone from a country that has free healthcare, it always astonishes me how it works in the USA. the situation with financial aid isn't that different here. bureaucracy takes ages and we barely get any help or money (if we get any at all), but at least we know we won't go bankrupt if we need to go to a doctor (be it for regular checkups, treatment or an emergency). I hope things change over there, it just makes no sense at all
Even in the UK there are some astoundingly terrible issues for disabled people on benefits. Move in with a partner? "Congratulations you make too much money as a couple. Your work replacement benefits are gone. They’ll have to care for you now. That £210 minimum from PIP? Surely that’s enough to sustain you all month right?" Same if you get married. (Yeah, disabled people don’t really have marriage equality- I think the US also has this issue.)
The potential for financial abuse or generally struggling to get by is incredibly high and nobody cares.
@@LadyAhro I'm not from the UK either (in my country it's even worse than that), but I've heard about this because I follow several disabled youtubers from there. if I'm not mistaken, Jessica Kelgren-Fozard has spoken about this before. basically no matter which country we live in, us chronically ill and disabled are a nuisance. we're legislated into financial hardship, if not poverty, because we live in a capitalist society and capitalism is ableist by nature.
THANK YOU CHELSEA! I have chronic pain and SUPER severe IBS, Im lucky to have a partner that cares for me. My physical jobs made me cry daily before and after work. In my chronic health condition situation I also notice people around me are not aware of:
- just because im mostly at home doesn't mean i 'cost less' I need frequent dr visits, supplements, etc
- the journey to find a helpful dr is often expensive and lengthy
-I still have family members judging my old clothes and lack of investment in clothes bc they forget I have to choose to have savings and drs or new clothes
- how physically painful it can be to have to hide a disability from an employer to keep a job (an employer that claims to accept all)
-how scary and stressful it is getting judged for not being able to have the vaccine after having severe reactions making my situation and independence level worse
-the guilt it is to have a partner w so much responsibility physically and financially (specially when Australian government doesn't wanna help you because your partner occasionally goes over the threshed-hold because of doing overtime to provide all I need (on top of working and studying full time)
not only in the US. I live in Australia, lots of people have it way worsse than me and still hard for me here
I have chronic pain and SUPER severe IBS, Im lucky to have a partner that cares for me. My physical jobs made me cry daily before and after work. In my chronic health condition situation I also notice people around me are not aware of:
- just because im mostly at home doesn't mean i 'cost less' I need frequent dr visits, supplements, etc
- the journey to find a helpful dr is often expensive and lengthy
-I still have family members judging my old clothes and lack of investment in clothes bc they forget I have to choose to have savings and drs or new clothes
- how physically painful it can be to have to hide a disability from an employer to keep a job (an employer that claims to accept all)
-how scary and stressful it is getting judged for not being able to have the vaccine after having severe reactions making my situation and independence level worse
-the guilt it is to have a partner w so much responsibility physically and financially (specially when Australian government doesn't wanna help you because your partner occasionally goes over the threshed-hold because of doing overtime to provide all I need (on top of working and studying full time)
as someone who works in healthcare...one word "insurance" they denied a patient a line because they were "outpatient" ie they were in a different area of the hospital because we were literally full and had no normal beds...because that they said "lul nope they not allowed to get the line" which is utter bullshit
As a female Indigenous medical worker, thank you for this! It's an iceberg, to be sure, but more chats like this will bring better patient care! EVERY patient deserves to feel safe, to be satisfied with their care, and TO BE LISTENED TO.
The problem is that it is hard for someone with no medical training to know the difference between "the doctor listened to me but just decided that I was wrong" and "the doctor didn't listen to me."
I’m disabled and this is my first TMD where I went from “Wow! I’ve never heard of this topic” to “Oh my god how have people not heard of this” 😳
It’s surreal. This is what we’ve been saying for decades. She just condenses it so well for this episode.
I love TFD and I've been following since the beginning. While I've never been able to take a lot of the advice, especially around investing and savings, I always watched because it's the information we weren't taught in school presented in ways I can understand, and can even be advice I pass on to others. However, I am disabled so having a financial safety net like that is not/will not be an option for me. Yes, it's terrifying. Seeing the wonderful Imani on here speaking her truth and giving facts about what it's like for fellow disabled folks is THE FIRST TIME I've ever felt seen by TFD. Please bring on more guests with varying backgrounds/financial situations. These are stories that need to be told.
I feel like I could watch at LEAST 5 more hour long interviews like this with Imani. She's so knowledgable and like she said, having a disability impacts every part of your life. You could pick any one of the issues she talked about today and expand on them easily.
Also, many companies and organizations say they promote hiring the disabled but in reality they actively discriminate and do not hire you if you are disabled! It took me 5 years after I applied for disability to get approved.
The most relatable TFD yet! Thank you Imani for always bringing to light what so many of us struggle with.
I work at a legal aid firm. We've had people inherit homes and lose their benefits, even though the disabled person didn't know they were part of the person's will. Our staff have been able to negotiate with SSDI. So many others can't.
My mother has been dragging her feet about getting any kind of will, etc set up to make sure I am not destroyed financially after she passes and her house and car land in my lap and get me cut off SSI and possible a reduction in SSDI. With my medical expenses it would be gone in a year or less.
@@jenniferwells2291 legal aid might be able to help. There is one in every state and most territories of the US.
As someone with hypothyroidism, adrenal insufficiency, PCOS and hip dysplasia, I am so tired of the" beans and rice" rhetoric because it destroys my health. Sure I could live on macaroni and cheese and other cheap foods,but then I wouldn't be able to go to work because of inflammatory reactions. Taking care of your health is expensive and that includes food!
Ik Dave Ramsey says that all the time. It is code for punishment, or some see it as paying their dues. My mom says she did that getting her doctorate. Well, she had genetic health issues then, and they are worse now, and has many new lifestyle issues that sarted in her 40’s. Eight years of being malnourished has long-term effects, and or can influence pre existing or predisposed issues.
@@borkbork4124 "what you ignore now will demand your attention later" I think so many people in their older age have health issues because of poor diet and yet it's encouraged by the so-called Financial gurus; they completely ignore the fact that the greatest wealth is health.
Amen!
Completely agree. I use to work for Amazon and they promoted us having healthy nutritious snacks however, your vending machines have none of those options. Also, the cost and shelf life is vastly different which is why we have more access/availability for non nutritious snacks.
@@borkbork4124 Ok rice and beans in itself is not punishment. Latin community has eaten it for days without it being a punishment but I understand that people with disabilities should not have to be forced to eat based on necessity only
It would be great if you could have Imani back. She is so knowledgeable, and you guys definitely covered a lot but I definitely feel like this interview barely touched the surface. This may be one of the most profound topics that affects finances.
I’m so glad this topic is being covered I live on SSDI as a disabled single mother and I’m thankful for what I have but it’s a struggle in areas. I am so happy to see this speaker, I follow her on Instagram and she is a great advocate on this topic and provides such a great voice about our struggles within the disability community. I pray that she continues to fight but also have access to restful and blissful experiences to self care. Salute!!!! 😇🥰😇
Haven’t even watched the video yet and just wanted to leave a comment. So few able-bodied people talk about disability in regards to money in a good faith way, and I know you will on this channel. Thank you!
Speaking to your point on whether there are disabled people on the cusp of disability who are forced to choose work over taking disability benefits: I'm recently disabled as a result of long covid issues and am also graduating college and looking for a job. I swear ever since I stopped disclosing that I have a disability I get more call backs on my resumes. Its been an incredibly frustrating process, but I doubt that government assistance would be any better as while I struggle to do every day tasks only around a fourth of people with my condition are considered sick enough to even potentially qualify and I'd rather not go through the hassle.
This interview was brilliant, thank you Imani!
as a disabled person myself, the only "gaming of the system" I can do is having friends who make enough to assist in supporting me enough that I have spending money and making sure we all have food by saying I prepare my own food all the time... I am a picky eater though so that's not far from the truth but we generally have group meals that everyone will enjoy to save money even more.
I had to "game the system" for a while by doing like $50 p/w undeclared cash income to survive by actually being able to afford the medication that keeps me alive
pretty much this, family is just sending each other gift cards, and pre paid cards and cash to those of us on disability or stocking up food pantry when visiting. If you're not careful, loan sharks take advantage of you needing your money.
“Punishing people for being born in the wrong bodies.”
You pretty much just summarized all of human history in that one sentence.
And for getting into accidents. Or acquiring a debilitative disease. Or just plain getting old.
Thank you so much for this episode. As the sibling and caregiver of a disabled young man I learned a lot, found any ally, and felt supported in my work with my brother and gained knowledge in advocating for him and for myself.
My husband is legally disabled and he's "lucky" and has it well off compared to many people.
I work for a living. His job shutdown and that was his push for disability with 10 years worth of medical paperwork for his disability. Got a lawyer and fought the government for 18 months and he won. He gets all the benefits of the free healthcare plus my healthcare that I pay for as he's on my health insurance.
Being disabled is not easy like people think and is costly. The government screws over a lot of people in need of disability but can't get on because they're working. Of course they're working, they need shelter, food and water. They don't have anyone to give them these things so they can sit around doing nothing for the government to decide they really can't work.
My husband had me for that. Then the health benefits from the government that they pay for made me laugh. The part that you pay is the same amount I pay for, but I pay for two people AND I get better benefits PLUS cheap prescriptions too.
My husband got lucky and is one of very few legally disabled people who actually have it made.
My brother is on SSI and one time he made $200 for being in an adaptive fashion show. As soon as the $200 was reported, he got a bunch of letters from SSI about a reassessment of eligibility and a reduction for that month. A ton of paperwork was required to reconfirm his eligibility or he would loose his income.
Sounds like SSI. I was on the program before they put me on SSDI. Gotta love the programs that keep you below the poverty line, and penalize you for things out of your control.
So unfair!!!
I became physically disabled due to COVID-19 for almost an entire year, as of 2020, and I now have chronic issues because of it. I've never realized how horrible the United States treats disabled people, and how few options they have. Can't work? Well now you don't have healthcare to help with your disability. Not to mention money to pay your bills. Thanks for talking about this subject, Chelsea!
My mom became physically disabled because of COVID-19 as well and it's a goddamn nightmare. The system is so slow going and it takes forever to get anything done.
I’ve been disabled since a teen and my mom was disabled young. I tell the well ppl you know the monsters that’s talked about under the bed. It’s actually the medical field the doctors and nurses. You don’t know horror until you’ve experienced the abuse and neglect from the medical field.
Best interview I’ve ever seen on this channel. SUPER eye opening. This woman is a treasure. Had never heard of her before but just wow!
As someone with an invisible disability that has mobility and pain issues that are not apparent in the short term of a interview I have definatly lost a job disclosing too soon. I made it to the second round of interviews and the interviewer was going over the next training classes to see when my schedule would fit. I disclosed my disability and suddenly she noticed that none of the work terms I had done in collage was really retail and this needed at least 6 months of retail so they would have review and get back to me. A week later I got a letter in the mail stating that I had not been given the job because of my lack of work experience, experience they had known about since before the first interview. It was the one an only time I ever got a letter telling me I hadn't been given a job.
Thankfully I'm quite blessed now and fully aware of it. I've worked from home since before Covid with pay that would be good in a big city and imposable to get in the rural area I live in. I'm good at my job and find it very rewarding. Yet I know as I get older my condition will get worse and I will be looking at surgical solutions. When that time comes the 3 steps down from my front door won't be doable and my current bathroom won't be usable. I have a good job and pretty good insurance but am very aware that when this reaches the point where I have to deal with it everything could go up in smoke even if I plan as much as I can.
Sorry to hear that. I only have qualifications for physical jobs and was crying before and after work from pain. Started losing shifts once I couldnt do many of the physical things.. feel a bit lost on what to do now.
I love seeing disability content and I especially love hearing Imani’s thoughts on these issues
Dang. Thanks. What a great guest. I have a condition that limits my ability to work full time. I’ve been slowly wiping out my savings and I’m really worried about my future. As someone who had a pretty good career for 30 years it is scary. I have only one child and he needs his income to save for a house. It breaks my heart that I may have to ask him for help in a few years. Our system needs to support people with health issues more.
Thank you for this. It needs more awareness. It's such a heart rending systematic abuse.
This is a really good interview and I learned a lot. I can tell the TFD audience has more to learn from her and it would be great to have her back.
Something that upsets me about the situation around type 1 Diabetes is how it is defined. My hubby is a type 1 diabetic and employers will tell him it isn’t but then will not hire him or fire him when they find out. Including one who fired him, which I can’t name, that trapped him (not me) into signing an NDA to get a severance as they knew he could sue, but also knew he couldn’t afford to go without the two month’s pay upfront to get nothing while suing. They 100% banked on him having no option but than to just take it or legit die from not being able to afford insulin while fighting it.
There is something called a Special Needs Trust or Supplemental Needs Trust that disabled people can set up to have assets above their asset and income limits. If you are a disabled person and inherit money or something like that, you can set up one of these to avoid losing any benefits like Medicare, Medicaid, Social Security, SNAP, etc. It's a bit complicated to set up, you need a lawyer and then you need a bank to set up an account, but if you are a disabled person, it is totally worth it if you want to be able to have money.
Basically this is like how rich people use offshore accounts for tax evasion, except it's a technique disabled people can use that is perfectly legal that we can use to qualify for means-tested government benefits without giving up all your money (i.e. without doing a Medicaid spend-down or something like that). Technically the money isn't yours anymore if you do this but instead belongs to a trust (a legal entity) run by trustees which is contractually obligated to use all of its money for your benefit but not in a way that would ever cause you to lose benefits. So you no longer have direct control over it. But you can still spend it on things. Although this is a little complicated and involves having to call the trustee to ask for permission to buy something and then getting sent the money.
Anyway, it would be great to have an episode where you have on someone who knows about Special Needs Trusts or Supplemental Needs Trusts for disabled people. As is typical for our government, instead of solving the problem of means tested benefits being means tested to the point of ridiculousness and forcing disabled people into poverty, they instead created a type of legal loophole allowing people to avoid means testing that works for people who know how to get good lawyers and stuff like that. So ironically the people most likely to be able to successfully navigate this system are people from wealthy families who can hide the money of disabled adult children in these trusts and make them on paper appear to be poor and qualify for Medicare, Medicaid, Social Security Disability, SNAP, etc., while still being able to have a wealthy lifestyle. And the beneficiary doesn't have to pay taxes on any of it (the trustees do, though). And the money in it can be invested and everything.
And if you aren't careful about how the contract is written, the trustees can steal the money from the beneficiary by changing the beneficiary to themselves or something like that. That is a difference between revocable (modifiable) and irrevocable (unmodifiable) trust, with revocable the contract can be changed but with irrevocable it can't be. And there are also both first-party and third-party Supplemental Needs Trusts. Third-party ones are better because with first-party ones, by law, once the beneficiary dies, any remaining money still held by the trust refunds the Medicaid program of every single penny Medicaid ever spent on the beneficiary and only after that can the remaining funds go to people in the beneficiary's will. With a third-party trust, the money is safe from being confiscated by government programs like that. On the other hand, a first-party trust has the advantage that the beneficiary is the same person as the trustee and the beneficiary controls the trust directly, at the cost of having to pay Medicaid back all that money when they die of course. But maybe a bit more convenient while you're alive. Anyway, this is like, a huge loophole allowing people to stay on means-tested benefit programs if they have too much money by storing the money in this special type of account/legal entity that is not technically them so it isn't technically their money. I highly recommend all people on means-tested government benefit programs look into this if they're looking into ways to make money without getting kicked off the programs.
It might even be possible to have a job pay money to this trust instead of directly to the person, if the employer is flexible, but I'm not sure if that's legal. It might not be. So you should have an expert on to talk about this because it's very useful for disabled people who need to be on Medicare, Medicaid, and Social Security but it would be good to have accurate information from someone who knows more than I do about this. I'm just getting one of these things set up for me and it's a very long and complicated process involving meeting with a lawyer and someone from a bank and all these people are very busy and difficult to get appointments with and the trust document itself is maybe 6-7 pages long of legal text that is pretty clear what it means. But it takes months to set these things up, it seems.
It's good to know, but it's so infantilizing that such a thing is needed just to be able to retain what you already own and get the assistance you need
Even if you are not disabled, there is a lot of knowledge to unpack in this video
Another thing, my HUD apartment building has a wonderful computer center designed to enable those who live with low vision, blindnes, and those who have to use voice dictation to access computers, and tablets, along with training. When the management recently hired ambassadors to help train residents who received free devices how to use them, the qualifications included MUST HAVE A CAR. They excluded me and others without a car from doing this job, which means our expertise was complete ignored. We would have been expand the views of many computer users to the many accessibility options available that could help them do things differently, instead of assuming they don't exist. For those without disabilities were often NOT TAUGHT about these matters.
As a disabled person, I am so glad this topic was given the respect and visibility needed.
Imani was amazing and she hit so many things that were wrong with America. I have witnessed how disability forces people into poverty and it's honestly sickening. I learned a lot and we can only hope for the best. Please do more pieces regarding disability because they're so often pushed aside. Thank you for this awesome interview
I am so glad that one my favourite disabled creators was interviewed for this episode, I love her opinions!
Any success in life, no matter the definition, requires energy to do so. The more energy you have the higher your ceiling.
Wow I'm so glad to see this topic. I was signed off work due to my health and haven't managed to return to work yet almost 10 years later. I've been working hard on stability to return to work to pay off my student debt and buy a house. Hearing people talk about their high income jobs, savings, houses etc tends to make me feel depressed and panicky because it seems so out of reach. People with disabilities and long term health problems are so often excluded from conversations about financial independence. We're basically told we're ill, to get benefits, disappear and stop trying. And the way we're not allowed to save to qualify for benefits is one of the worst parts of it and is a nightmare that keeps us trapped. A lot of people also don't realise how fragile health is, and how you can be working full time one day and disabled the next day.
I disagree that it's about racism, as we have the same issues in the UK where we have a different history including around race. Here it's very much about class, regardless of race. People like to look down on poor and disabled people and think that we're in this situation due to poor choices, because it makes them feel safe from the same fate. When really a lot of it is about luck. I'd love to see much more done to help disabled people out of poverty into financial security.
Imani you are amazing!! I too have Cerebral Palsy and Social Security Disability is a horrible system. It is designed to keep us poor as you say. I work a full time job but I worry everyday the day may come I can’t work and I will have to go back to the system that has attacked me for three overpayments to the tune of thousands and thousands of dollars. I have had to fight the very system that is supposed to help us.
Completely sad. I want you to know you are smart articulate and beautiful. We have to be the voice for those that don’t have one.
IMANI IS SPITTING STRAIGHT FACTS thanks for having her on
I think about this often, about how lucky I am that my body is strong and healthy. I wish everyone was fortunate enough to be this well off.
Imani is an exceptional speaker. I follow Imani on TikTok and love her content. Thanks for giving her this platform on your channel.
I learned ASL during a210 stay in county jail, because my bunkie was 100%deaf. Without any advocacy, translation, or even legal assistance in there - she taught me everything. ABCs, 123s, how who what when where why's and so on....
I became so proficient in sign language that I was transported WITH her to the main jail "medical" division from the minimum security facility in the early morning hours (multiple times) to translate for her because of the language barrier.
It really bothers me that there is such little assistance for people with disabilities. I have made an effort to maintain our friendship even outside of jail....I'm thankful that this problem becoming more and more recognized and I'm optimistic for the future...
As a fellow deaf person, thank you for learning and then helping her out. This type of thing is terrifying to us knowing that jail and prison is a life threatening situation for a lot of deaf people who end up in the system.
The words 'grindng/hustling' ..When it's the job doing to you, it makes me think of the workplace abuse called 'speeding up' a term I read in the book The Jungle about the workplace firing a person the moment the worker burns out.
My gosh guys I’m so glad I found this video, I was actually on SSI receiving a pitiful 693.58$ per month in the very expensive LA area and after a quick 6 months I said forget it and I got myself a job, while I am disabled, fortunately I can work, so I blew past that 2,000$ limit and they cut me off😒
Disabled doesnt mean "cant make an income"
@@Mike-om4tv yeah IK it’s just everyone made me feel as if I’d just get in the way if I did start working
Paratransit is awful. I'm autistic and adhd and qualified for it and wow. Must call the day before. Must be ready for them to show up - up to an hour before your pickup time. The travel time is 1.5-3x the amount it takes y regular transit or cars (which keep in mind most regular transit is still a longer time than cars.) It is SUPER bumpy.
It’s really horrible. If you have chronic pain is... indescribable.
imani's tiktok is a must follow, always full of rich and thoughtful content, not only about disability and race but also online communications in general!
This topic is very eye opening and hits close to home. I have relatives on disability and I see firsthand how scarce resources can be for them especially on a very limited income. It's unfair to categorize people on disability as trying to game the system because there's tremendous sacrifices they are making to recieve support. Anyone can become disabled in any given circumstance so this is information is valuable and humbling.
Wow. $2,000/month minimum is outrageous. I’m so glad Imani and TDF shed light on this.
No, that's $2000 MAXIMUM in TOTAL assets. In other words, if you're on Medicaid, it's against the law to have an emergency fund that would actually cover a moderate-sized emergency, like losing your source of transportation and having to buy a reliable used car, or getting a leak in your roof. If you scrape together more than that maximum, then it ends up being paid to your health care provider, who will make sure you always owe them more than you can pay so they get any nickel that trickles into your possession.
We have to stop picking and choosing what disabilities are worthy of support. One of the scariest things to witness during the pandemic was watching the same people, media and institutions that encouraged and promoted the public health initiatives to ‘protect and support health’, dismiss, shun and attack the individuals that were disabled from the vaccines. It shouldn’t matter how or who is affected by disability, how rare or common the affliction is, or whether or not their disability aligns with popular political preferences, everyone should be treated with kindness and respect 😊🌸😊
YES!!!! Thank you!
I know people who had it worse but the vaccine affected my so bad, im on month 4 of muscle issues, vision issues, heart issues, chronic pain issues etc. Im lucky to have my partner caring for me because Drs surely dont wanna report my issues which means I wouldnt even have an official argument about my symptoms!
@@rba4377 hope you start feeling better soon though beautiful 💜! Also most of the symptoms you mentioned are actually pretty common amoung the rare side effects, so not only are doctors required to report them, there are many doctors and researchers trying to treat them and raise awareness and funding so definitely look them up online and try go see someone. Often times with autoimmune complications people don’t experience them until months or years after the initial issue that caused it so I wouldn’t worry about the time to report too much. But as some inflammatory conditions can go on to become permanent if not treated early I would def try finding a doctor that you trust so that something as simple as a vaccine doesn’t go on to cause a major lifelong issue. Hope that helps a little and truly hope you’re feeling well again soon 😊
@@lunar686 thank! very rare to find kind words regarding this issue or even people that will say anything at all.. most people in my life choose to pretend nothing is happening. Anyway, seeing my Dr again this week and have my integrated Dr booked as well. Thank you so much, all the best
@@rba4377 hope everything goes well at your doctors visit 🌼. From what I know, I think a course of anti inflammatory, corticosteroid and immune suppressants generally bring most of the adverse events under control but most likely your doc will recommend bringing in the expertise of a rheumatologist to help out. Lol and don’t stress too much about people not understanding easily, I think the pandemic kinda drained everyone’s mental and emotional bandwidth, so people easily forget that adverse events aren’t just normal, but an expected effect of all vaccines or medications
Thank you so much for this interview. Being chronically ill, so much financial advice is just way out of my reach, and it can feel pointless to even think about it
imani’s twitter is one of my top fav accounts her commentary on everything she chooses to discuss is 💯💯💯💯
This was such an illuminating and sadly, horrifying, episode. I'm not American, so I didn't know the details of how hard it is to be financially stable and independent for people with disabilities in the U.S. The fact that the system seems to somewhow force people with disabilities to stay in poverty in order to receive basic medical health is just...is enraging!
I already loved Imani on TikTok; loved this episode. I don't think a lot of people realize how many people are disabled or chronically ill on a day-to-day basis. I wonder if you guys could do a mini-series or more videos with Imani on the cost of disability/chronic illness or how to navigate that. Although I don't think I'd benefit much because it would have to be, by its nature, very US-centred, I'd still love to watch more conversations on this. Jessica Kellgren-Fozard, Molly Burke and Hannah Witton were maybe my first steps into disability-awareness content and from then I've tried to follow a diverse group of people in this community and it has helped me a lot with closed ones or looking at the world around me and every day interactions differently. Molly Burke would be a great guest for a US perspective. A few things might be adaptable to different countries, perhaps, but it's always interesting,
The best part of your podcast is the thematic variety; you guys have such a diverse group of people/industries; every week is a pleasant surprise.
This was such an insightful and interesting conversation. As a paralegal, I work for an attorney who frequently works with the disabled when they will be inheriting or receiving large amounts of money. We typically funnel it into pooled special needs trusts. This allows the recipients to use the money, but avoid losing the public benefits for which they rely on.
I was diagnosed with hypermobile Ehlers-Danlos syndrome, as well as a few of the common related conditions in 2020. In a lot of ways it was a victory because I had fought for a diagnosis for most of my adult life. However, coming to terms with the fact that I have a genetic condition that is permanent during the middle of a global pandemic has been really mind-bending. Feeling shut out from society and mocked for being high-risk and not wanting to die has been tough. Knowing that many people are unwilling to be inconvenienced so that people like me can live and participate in society has made me do a lot of soul-searching, especially when some of those unwilling people were family and friends. Thanks for having this conversation. It made me feel seen and valued.
Just got it diagnosed myself, after having had 13 surgeries, dealing with knee subluxation, arthritis, a TBI plus migraines and dead teeth from a fall.... all issues I could have potentially stopped if I had been told as a child of my EDS. :/ Also got diagnosed with FND with my nerve issues. Really makes you have to get in touch with yourself.
Thank you TFD for bringing different perspectives. I learn so much from all these beautiful interviews. And thank you for being respectful with your your guests. Thank you Imani
The way our system and us as people in this country treat disabled people as disposable is heartbreaking.
I’m chronically ill. I have had 3 surgeries in the last 9 months. And I could possibly have another surgery this year. I’m borderline poverty. This made me feel seen.
You can tell Chelsea is very uncomfortable and out of her depth with this topic. Thank you. This is a conversation that needed to be had. Hopefully TFD will hire some disabled writers so these perspectives can be brought onto their platform.
Valid. But good on her for being willing to learn, and for doing so in public.
If you assume she is able bodied, yes, but you don’t know that, or if she has close disabled people in her life. It’s a good point you make but I think that these types of conversations between different types of people are great, just like conversations between races, religions, etc it helps just share understanding.
My single mother was permanently disabled at 61. It was hell. We had to make ourselves poorer in order to qualify for help. It was an awful experience for not only her, who couldn’t move her entire left side anymore, but for the entire family who had to help pull resources together, rearrange our lives while we waited for the assistance, which still wasn’t enough to take away the burden. This current system is crap and there’s no way for every person to plan for their ‘retirement’, when they could be disabled at any time and then their retirement would be spent.
Obviously there are no silver bullets, but I can't help but feel like a UBI would address SO many of the issues touched on in this episode. No more means testing means that people don't need to jump through hoops to get the money they need, don't need to worry about losing their benefit if they make even a few pennies too much during a month or are caught holding a little extra money outside of a special account. Yes, there'd still be issues with making things accessible and addressing how a lot of accessibility aids are stigmatized even by those purporting to be 'on the left', and by itself, UBI wouldn't address the chronic healthcare needs of many disabled people (hence why universal healthcare is also a strong need!) but I can't help but feel like these would ultimately be something like curb cuts: a benefit created to improve accessibility for one group that ended up making the country better for pretty much everyone.
There's just so many ways in which doing the right thing for disabled people could help everyone, and we're really just making the country worse by not admitting that we *all* need help sometimes, and that even those of us who would never directly benefit still would benefit from living in a society that values everyone, not just those who are most valuable for the wealth extraction priorities of capitalism.
Imani never fails to hit the nail on the head I couldn’t have explained it better
I'm really happy that you interviewed Imani, Chelsea. She's a real leader in the disability rights community. Just please, please, please just call us "disabled people," not "those living with disability." We're proud to be disabled, we don't shy away from identification with the word. On a similar note, I'm disabled, but I'm technically "able boded." (I'm neurodivergent, not physically disabled.) Therefore, "able bodied" isn't the opposite of "disabled." You could just say "nondisabled people" or "abled people."
Anyway, rarely are DISABLED PEOPLE asked about disability matters, so thank you for this.
Who said you represent all people with a disability? As a disabled person, I and many others prefer to be referred to as living with a disability, as my entire personhood is not defined by my disability.
I'm ND too, but I know this preference differs from person to person. Chelsea's usage here is the most inclusive to different perspectives IMO, since the usage you're proposing has a much deeper stigma attached to it, historically.
'We're proud to be disabled' ???? Pardon me, but speak for yourself and yourself only please.
Incredibly bigoted thing to say, Kim.
@@MrJayColes "You'd better use the euphemisms the ableds invented to be condescending toward disabled people, or you're a bigot!" 🖕🖕🖕🖕
I'm getting so stressed just listening to this video. We need to do better for people living with disabilities in the US. This is ridic.
I LOVE IMANI! She’s taught me so much about disability and ableism I’m so glad you have her on the show!
I absolutely love that this interview happened, and it was so informative, but I am begging TFD to actually caption their videos?? There is so much irony in struggling through inaccurate automatic captions on a video about disability.
Thanks so much for covering this topic! I am Disabled (with a Capitol D meaning I find pride in this Identity and label) who has in the past been ON disability ( and yes it’s important for abled bodied people to know/learn that being Disabled and being ON disability are NOT interchangeable.) An important note; those asset limitations include your spouses income and assets. so in reality, disabled people do not have marriage equality.
I did not go thru all the comments to see if this was already mentioned. I believe it's a federal pol8cy but in Minnesota if you are "certified disabled" you can save money in an ABLE account" to be used for future necessity purposes -housing, transportation. Education, etc - and it does not count against the asset limit for benefits.
Only if you were disabled before the age of 26.
My condition recently worsened and I have lost the ability to use a regular vacuum cleaner so, my family got me an iroomba and it helps SO much.
I'm so grateful for such a supportive family ❤️!
This was a wonderful conversation. I first started following Imani on TikTok and really appreciate seeing her view and learning more about the roadblocks disabled people face in every facet of American life. We have to do better.
This is my favorite video you’ve ever made, and I’ve been a fan for years.
Thank you.
Thank you for bringing light to these issues , and not by preaching about it from some pedestal, but by having a real conversation with a leader within the community!
10:47
I “hid” my disability (aka didn’t ask for accommodations or reveal my diagnoses) prior to the pandemic , due to fear of not getting hours at my job. I’d seen my boss not hire someone once, telling me in private that it was due to not being able to schedule them as much as needed due to their disability.
Not only was what she did illegal, but it set a fear inside of me that lead me to hide my own disability from most people in my life, unless I absolutely *had* to tell them.
The pandemic is what helped me find my voice and begin speaking up about living with a chronic illness. I just wish I’d found my voice years sooner.
This video and conversation helped me feel so seen and heard and I truly hope it sparks more movement on the issue.
Yep, I was chosen to be made redundant when I stopped hiding my chronic illness.
The only thing that separates me from you is luck and time... look around, this is your retirement plan." This right here. This should be THE argument even for the most selfish in our society. This WILL be YOU at some point in your life if not by circumstance, then by age. Do you want THIS garbage system being what you have to work with, or do you want something better?
@Dr Vlad Please, your broker you mentioned, how do i get in touch with her?
@Dr Vlad Thanks for sharing, just looked her up and I'm super impressed with her credentials. I will be writing her shortly
I've watched the financial diet, and Chelsea for a long time, but never felt like anything you mentioned applied to me, because I am a struggling disabled women who is in the system and is limited to the $2000 in assets on SSDI. I can no longer work outside the home because of the extent of a surgical brain injury that I acquired while trying to rid myself of chronic epilepsy due to a birth defect. What Imani mentioned about the difference between able-bodied persons and us so resonated with me. Unless you're independently wealthy and can afford in home care even without health insurance this is the system you're going to have to deal with at some point in your life.
I struggle to find something I can do because of the nature of my disability and that I've suffered from it since childhood. I was never able to retrain much of anything in school because of the meds I had to be on as a child, so my grades were too poor to qualify for any kind of scholarship so no college. I've been a subject of the system with very little hope to break away from it. My illness is also hidden unless I shave my head and let people see my gruesome scar, which I know no one wants to see. So I cover it up, and when I grew to sick to pretend being well, I was forced to leave my job in retail.
I was able to marry but we have to keep our accounts separate, and if not for my husband's help I would not have been able to try what I'm trying to do now.
I'm a content creator, with a sewing channel. Sewing being the only real skill I have. Sharing what I know being the only cost effective way to use it.
In a world and country that considers itself so ahead of the curve, I should not have to struggle and sacrifice and barely make ends meet this much.
Thank you for featuring this topic, hopefully it will make some difference, but not holding my breath. Since they review my medical eligibility every couple of years seeking to cut off my benefits if they see improvement, which they never have, cause... my left frontal lobe is gone, and that sort of thing doesn't grow back, just FYI.
#epilepsywarrior
SSDI does not have caps on assets. Are you referring to SSI?
@Dazed_and_Amazed sorry, should have clarified better, I can't have more than $2000 in my checking and savings combined. Which makes it impossible to save.
OMG! I immediately clicked on this video. Imani is my favorite Tik Tokker. She is brilliant. Can't wait to hear what she has to share on this topic.
IMANI!! Such an amazing advocate and all around fantastic person. I'm so glad you got her on the channel!
Yes yes yes yes YES to this interview.
As someone with a limited capacity to work because of (invisible) disability, I have watched so many TFD videos but often thought "lol, not for you though. You're not earning enough for this thing."
I have adhd and and while not physically handicapped, I still find lots of things really hard, burn out quickly and have very bad mental health dips. Can't imagine how much worse all that must be with phyisical difficulties also, and with living in the US. Great interview!
The show i never knew that I needed.. I just recently filed for disability for my son..so this is super helpful 🤗
Please be careful of saying "born in the wrong body" when referring to disability. Many people with disabilities don't feel like we are wrong. It's society that is not built for our differences.
Yeah born in the wrong body is definitely gross to me… I have ADHD and other forms of neurodivergence but that doesn’t make my “body” or brain lesser than, just different and not as easily adaptable to the demands (lots of distractions, advertisements, a ridiculous healthcare system) of modern society
Also, a lot of people become disabled and are not born that way
I took this as someone who doesn't feel they are in the right gendered body ???
@@serenarobak3640She is talking about disability, not gender. Either way, it's not a great way to word it and the original comment was respectfully suggesting she is careful with that.
I think it can be inferred that within the context of the conversation, this phrase was meant to be translated as, “born in the [what society deems to be] wrong body”.
Average ssi payments 600... Average ssdi payment 1200
I live in Mexico, and in the city I live in, there is great disability infrastructure. I noticed it right away. Ramps everywhere including on the sidewalks and most popular stores are on ground level.
This was great. Would love to hear more about disability topics.
A 3-6 month emergency fund can be a very different number for much of the disabled community than for the non-disabled community
& between overpayments, $841 ssi income maxes, $1,350 ssd income maxes, needing to restrict income to keep Medicaid because private insurers don't provide needed services; the system makes life extremely difficult for people on SSI/D
@Frankenstein Real They may have increased but if they have, I don't think that they've gone up that much.
@Frankenstein Real $841 is the maximum SSI payment for 2022. However, this does not necessarily mean that it is the person's only income. For some, it is, especially people who have been disabled all their lives and could never work and pay into the Social Security system. $1350 is the 2022 maximum monthly payout for SSDI (Disability Insurance, for those who did pay into the system). I don't know if J.R. revised the original post after re-checking the numbers, or if you incorrectly said the amounts were inaccurate.
@Frankenstein Real I think conversations about Disability income are often muddied by the two separate programs, SSI and SSDI. It seems to me that government employees have a tendency to assume that everyone on SSDI also receives SSI, while many disability advocates like Imani are addressing mainly the situation of people who have never been able to work and therefore receive only SSI. I often feel frustrated when I try to get accurate information about my situation as someone who receives only SSDI, not SSI. Just to clarify, and don't feel you have to disclose this if you don't feel comfortable doing so, when you say you make above the $1350 amount, do you mean on SSDI alone, or is that a combination of things, such as SSDI and SSI? The Social Security website makes it sound as if $1350 is the maximum one could receive on SSDI alone.
@Frankenstein Real I think that you deleted your comments before I saw them. I wish I saw them sooner because I think your points were thoughtful
@J.R. @Frankenstein Real I agree. I think that what I may have been misunderstanding is that the $1350 cap is the maximum you can earn by working while on Disability (after your Trial Work Period, during which there is no cap on earnings), while the maximum amount paid by SSDI is much higher, $3345 (but you have to have to have been earning well during the years you were working to get anywhere near that much). For those whose SSDI benefit amount is fairly high, there is a significant "financial cliff" if they overcome their disability enough to earn $1350 but not enough to replace their full benefit. "Great, you can work now, so now you get to be destitute."
I became disabled at 23 and unable to work at 25. Because I went on ssd and ssi so young I receive almost $500 a month. I can’t have more than $3k saved or I lose SS. If I lose SS, I lose medical insurance. My life is awful and I can’t increase my QOL
I feel this. I'm 22. Became disabled officially 2 years ago. I get 30 dollars a month right now.. 60 if I move to a facility but I've been in the hospital for a little over a year. I literally do not know wtf I would do if I was completely alone. It's just horrific. I'm sorry you're going through this too.
I am a LTSS waiver service case manager in Philadelphia. Do not get it twisted, these services are not just for the elderly. If you or someone you know are in need of waiver service outreach the County Assistance Office to apply. This is such a great topic that needs to talked about more.
CRUTCHES AND SPICE!!!!!!!!!! OH MY GODD!!!!!!!!!
ok now that I'm calm.... this is THE EPISODE I have been waiting for!!! Imani is so right, disability is always the last intersection to be considered most of the time, especially when it comes to personal finance. My doubly disabled self is so thankful for TFD, Imani, and this podcast!
Thanks so much for sharing this info. The fact of the matter is if you get a chronic illness (many which require very expensive medicines to stay functional) you will be poor in the US. There’s literally people with chronic illnesses who have to give up working in order to get disability so they can get government healthcare to pay for their medications. Please have Iman on again!!! She is fantastic and such a great voice for the injustice and toxicity of our systems.