The Politics of Disability

nobody chooses to be disabled. Of course not. You may think disabled people are as lady gaga might say. Born that way. When we hear the phrase, a person with disabilities, the most extreme examples often pop into our minds. The people were very distinct and outwardly obvious, physical and cognitive challenges. People who have quite likely struggled with their disabilities since birth. The topic of today's episode includes these valuable people, but our emphasis lies with a slightly different statement of nobody chooses to become disabled, similar to a sudden and unexpected death.

Finding oneself disabled early in life is something we think about maybe for a moment and then quickly, quickly and fearfully dismiss. Those of us were the right fortitude and resources might put plans in place to deal with the possibility of a future life changing disability. But this is not common practice for many valid reasons. There are well over 40 million disabled Americans. That's a staggering 12. 6% of the population and most of these people work out by surprise. I'd like to share with you the story of a young man who wins late 20s had a promising fulfilling career ahead of him.

His entire identity revolved around his work and it was the one environment in which he truly thrived. He was for better or worse, a workaholic while his personal and social life were plagued with anxiety and insecurity, his job provided to save space where he was able to capitalize upon his potential almost out of nowhere. His co workers started to express concerns about his health, noticing that he appeared run down and not his usual self knowing the extent of his commitment to the job, they first assumed that he was merely overworking himself and urged him to take a break.

The man initially seemed oblivious to his condition, but as time went on, his exhaustion and general health declined to a state where he could no longer deny something was wrong. But what was the problem? There was no outward indication that something was a mess with his body. The man was young and strong, so he failed to understand why he had difficulty breathing when he engaged in even minor physical exertion or why his legs and hips act after walking for such a short distance. It literally took falling unconscious at work and being rushed to the hospital for these young men to begin to realize that something was wrong and finally seek assistance for his medical conditions.

But even then, the journey for answers was all a tell given this young age man, doctors tended to wave off his complaints, probably entering the word hypochondriac into his file after he left the clinic. In a bizarre twist of fate, you're all just accidentally diagnosed the man with a collapsed lung. Yes, you heard that right Urologist which landed him in the emergency room After a closer look at the man's respiratory system, ophthalmologist explained. You have the lungs of an 80 year old. The doctor couldn't explain why or how, but his young patient lived in a body filled with what looked like second hand and well aged organs.

Soon after, the man was diagnosed with a bone disorder called a vascular necrosis. Again, a condition suffered primarily by geriatric patients. Your bones are badly degraded, but I really can't perform a hip replacement on a person of your age. He, he was told by his orthopedic surgeon, the the materials will deteriorate too soon because they are designed for elderly patients who aren't expected, who are expected, aren't expected to outlive the normal amount of wear and tear. Doctors would go on to discover a rare condition wherein the man was susceptible to catastrophic medical ailments that would require constant treatment.

Suddenly this young man was plunged into a life of debilitating pain and chronic health conditions that would forever end his career, and his prospects of working again. He would go on to battle lung cancer, multiple life threatening infections, ongoing respiratory disease, and a host of other problems that all took a heavy toll on both his physical and mental health. His life would come to revolve around an endless barrage of invasive medical procedures. A near full time schedule of doctor's appointments and a humility dating state of dependency upon others to accomplish the daily tasks of living that most people have come to take for granted without even thinking of them in the problem of his life, this young man was permanently disabled and his new job became struggling to survive his ailments.

Well, at the same time navigating complicated matrix of overlapping bureaucracies, a flawed healthcare system and the financial burns that are far far too all consuming and dehumanizing. This man would also suffer from the stigma both from society and that in which we were self imposed of being on welfare. The man in this story is me. Over the years, I've struggled to adapt to my new reality and I have managed to find new purposes in life like this show, for instance, but I will never again be capable of working returning to the traditional work that I used to love.

There are weeks when I cannot even manage to sit here in this chair and talk into a camera. And on those days when I can, my often forced cheerfulness is hardly representative of my overall health struggles. However unfortunate the cards I have been dealt, I have been blessed with a good fortune of having a supportive family, extraordinary health care providers, and some of the best friends anyone could ever ask for, all of which have helped me to survive. And eventually dare I say, even thrive as hard as my life can be at times.

I consider myself lucky in a myriad of ways and because of the good sides to my bad experiences, I'm also inflicted by extreme levels of guilt, wondering why I deserve the quality of care and benefits that so many others are not afforded or privileged. Surely there are people that are more deserving than me who are better equipped than I am to contribute as productive members of society. I am angered and disheartened by the struggles of others and empathetic to those who have it so much worse and yet are less advantaged.

I want to list a few of the ways in which I consider myself fortunate, especially when compared to others who find themselves disabled and stuck in a life they never expected to be living. I'd like to say that I'm looking at the right side and displaying a positive attitude but I'm afraid it's really the opposite because everything that I am grateful for only emphasizes the fact that not everyone is as lucky as me. Starting at what could be thought of as the end. I am fortunate to have been approved for Social security, disability insurance benefits or S. S. D. I. At a time when the requirements were less strenuous and I was fortunate to have received the correct information on how to tackle what was an arduous application process.

Our two guests today will share more about the difficulty of capping in to the S. S. D. I. Entitlement that all workers in America have learned and when I hear their stories, I marvel that I ever managed to secure the meager financial assistance that I currently receive. Being approved for SSDI. I is a journey with many potential missteps and pitfalls and too many people embark on this journey without the proper knowledge and preparation. Now, I am again fortunate that I had the support of friends and family while I was undergoing the lengthy process of becoming officially disabled.

As we will learn today. The requirements for receiving S. S. D. I. State that a person must be unable to work for 12 consecutive months before they are eligible to receive benefits and the application process often lasts much longer than a single year. How can a person survive without any significant income for such a lengthy period of time? This can be impossible for people in certain situations and I would have been one of those people if I had not been for a support system of loving people who allowed me to rely heavily on them during my own time of need.

I am fortunate to live in a state that has its own support system for people who become disabled, who are not receiving federal benefits. While I was undergoing the application process for S. S. D. I, the state of Washington provided me with financial and food assistance. Now granted the benefits I received at that time totaled less than $500 per month. And this meager allowance was approved only after many in person interviews and stacks of complicated paperwork, but it was still better than nothing. The greatest benefit was my eligibility for the state's Medicaid program, which made it possible for me to afford the dozens of medical appointments that the Social Security administration would require as evidence of my disabilities Furthermore, I am fortunate to live in an urban area where medical services are readily available and within reasonable distance of my home and many rural areas.

It is difficult for all citizens to obtain medical care. And I shudder to imagine the extra roadblocks that are thrown up when we add lack of income, lack of transportation and debilitating disability to the picture. Speaking of transportation, I'm also fortunate to have had a collection of friends who were in are willing and able to drive me to a seemingly endless series of medical and at the time. Bureaucratic appointments after I lost my own vehicle when my inability to work cause me to fall behind on payments and after of course I lost my driver's license when my legs became too weak to reliably operate the pedals.

I have also been fortunate and here's the key and securing healthcare professionals who put my well being ahead of their pay rate. In many cases it can be difficult or even impossible to find quality doctors, especially specialists who are willing to accept the low payment skill associated with patients on Medicare and Medicaid. I am also fortunate to be a single man with no family to support financially and emotionally. It is not only the inflicted individual who is affected by disability, but it's also the spouse and or Children who rely upon that person to provide for their needs.

This can make the financial struggle of disability all the more pressing with an entire family is suffering. But the problems are only related to money. What happens when a person can no longer pick up and comfort her crying toddler due to back pain or when he has to physically and mentally drained to properly listen to his wife when she wants to share the details of her day. Again, I am fortunate that I don't like particularly leaving the house in many ways. Agra phobia is a curse, not a blessing, but as a man who is mostly wheelchair bound while traveling outside my home, my lack of enthusiasm for being in public helps me to avoid the pains of navigating the world.

That even despite major progress in reforms such as the americans with disability act, it's still not entirely adapted for those with disabilities, making accessibility a constant battle. I am fortunate to have been referred to a specialty clinic that is able to manage my pain through a pump surgically implanted into my abdomen. This pump infuses small amounts of morphine directly into my bloodstream, thus avoiding the side effects and addiction issues associated with oral pain medication. Now the morphine pump does not completely control my pain far from it, but it does keep the pain at a mostly bearable level for that, in which I am grateful in a society plagued with an opioid addiction crisis patients requiring chronic pain management often face the obstacle of being treated as drug seekers and this can make them afraid to disclose their true pain mumbles and because effective medically managed pain control is so difficult to achieve.

Many desperate people resort to self medicating with drugs and alcohol. This substance abuse not only takes a heavy toll on a person's health but it can also make them ineligible to receive services on many different levels including Social security disability insurance. I am fortunate to have access to quality mental health services I have and I still sometimes do fall victim to overwhelming bouts of depression. Anxiety and stress are often more debilitating than my physical ailments and along with my mental disorders there comes yet another stigma. People who suffer from psychological challenges face the double whammy of having a disability that is not visibly obvious and can be difficult to prove.

Along with a disability that is tricky to treat or cure. Especially in a country where mental health care services are under funded and in desperate need of reform again enter the high occurrence of self medication with drugs or alcohol and all of the extra problems that come along with them. I am fortunate to have failed to successfully commit suicide. Yes I have tried and I've tried more than once. I know from experience that there are times when it's just seems too hard. So I have the deepest understanding and sympathy for people who with or without a disability.

Pulling them further down. See, death is our only escape from the pain of living. In fact the C. D. C. reports that according to a 2021 survey adults with disabilities are three times more likely to have suicidal ideation when compared to those without disabilities. And finally I am fortunate to speak english. This may seem like a crazy thing to be grateful for. But when I think about the many complicated steps not only to receiving Social Security disability insurance, but while applying for every other benefit offered to americans, I can't even imagine how much more difficult it must be for citizens forced to navigate through it all using the services of an interpreter.

My own journey has been a hard one but I realized that it could have been so much worse. When I picture for example, a woman in debilitating pain with no financial resources to own a car or hire a babysitter, hurting her three Children onto a public bus in an attempt to reach some government office in time for an appointment where she will be told that her paperwork is incomplete and she must return again next week. Furthermore, I am forever aggrieved by the bureaucratic roadblocks and the inadequate systems of support for people like myself, disability is all too often treated to a very punitive lens in which people are forced into abject poverty or subjected to endless scrutiny.

Nobody wants this kind of life for themselves or for the people that they love. But for so many this life is a crippling reality. Both the bureaucratic systems that govern disability and society as a whole must recondition themselves towards a more comprehensive and accurate understanding of living with disabilities and then do more much more to support the millions of americans who are afflicted with them and that my friends is the final word up front. I am sean saying heart and this is koo save America. Please do me a favor and smash that like button, share the stream and be sure to subscribe to our channel Today.

I will be chatting with a woman whom we should call Emily who is currently struggling to obtain disability status. And later on the show, I will be joined by Spencer visions, a former employee of the Social Security administration and the author of an extraordinary new book Social Security disability revealed why it's so hard to access benefits and what you can do about it. Stay tuned, We'll see you on the other side and joining me now is a woman who is struggling to get disability insurance and this is gonna probably be an angering interview because nobody, nobody in America should have to struggle to receive the benefits that forget about even earning, but they are entitled to.

It is an injustice on so many levels. Emily joins me right now. Hello Emily much for having me. No, thank thank you for being on the show and hearing about your story, let's just say angers me immensely. Um you know, as I said in the monologue, I have gone through this process myself and it is, let's just say justly that it's very humbling um to go through, if not at times utterly humiliating. Um can you share a little bit of your story? Absolutely. I definitely, as you were sharing yours, I very much felt pieces of, of how similar our stories are.

Um I was, I had chronic pain as a child and it was always dismissed as being normal and as I, as I got my period, I would miss days on end from school because of cramps and migraines, nausea. I was just told this is normal. And as I became an adult in the working world, I pushed through these days, you can't take that many days off when you're a teacher or at a startup company and I would push through this because I was being told that what was happening to me was normal And it wasn't until I was 39, this was after a decade of almost daily migraines of intense back pain.

Um It wasn't until I was 39 that I was diagnosed with endometriosis which would have caused all those symptoms of my periods growing up. I was also diagnosed with fibromyalgia at that time and the combination of these two things happening I and how sick I was, I knew that something was very, very wrong if I had felt enough if I had felt okay to keep pushing, pushing, pushing and all of a sudden, I wasn't able to make it through a day at work without falling to my knees with nausea or without having to drop a pen because of pain in my joints.

I was, I was so humiliated to be honest to think about not being able to work anymore because especially in America, if you don't work, your worth is very little our, our country has set it up so that if you don't work, you don't get health insurance. If you don't work, you can't eat. If you don't work, you can't have a home. We don't have social structures in place to be able to step up in these scenarios. Um, thankfully at that time when I was falling to my knees, I, I thought back to actually what a family friend had told me the year before, which was that and I was giving, I was like the middleman with this information.

I had a friend who was applying for disability. So I was asking this friend, hey, how does this work? And, and so I knew enough to to remember that person saying apply as soon as you can because that's when your timeline starts and I was so thankful for that. And um, And so I applied right away as soon as I knew that I was going to have to have a hysterectomy and a new for ectomy and was going to go into menopause and post menopause at 40. I knew that there were life changing things ahead of me that we're going to have to happen.

And so I heard that, that voice in my head saying apply right away and I did, I applied the month that I got those diagnoses. Um, and I'm happy to stop there. I'm happy to keep talking a little bit about how the rest of that process has gone. It's been four years since then. Okay, four years, wow, Now please continue talking about the process because, um, you know, I will say that, you know, the stigma too, you know, of not being able to work. Um, you know, and especially being young, people like ourselves, right.

I mean, people don't, and, and disabilities again are not always visible to people now, I end up, you know, having to be in a wheelchair most of the time when I leave. So that's that's, you know, sort of advantageous, but you know, five, I'm not saying this, right? Five year morale, jah, I'm sorry about that. Um, you know, again, that's that's not invisible to people. I mean, they can see that, you know, and so, and I've gotten this early on in the process. Um, you know, there's this, this inclination almost for doctors to just sort of dismiss things that, oh, well you're just depressed or it's in your head, it's mental or you know, that type of stuff and and you have to jump and and again, that is very dehumanizing and humiliating.

And you also walk away from that. And this was during one of the times when I tried my first suicide of town, because it was this sense of helplessness, you know, at a certain point that something is really wrong and you're desperate for help and you're being told there's nothing I can do. Well, we can't find anything. And of course, you know, because you're you're you're on um at this point relying on community health clinics that are overwhelmed. Um of course, they're not finding anything because they're not really able to look, they don't have the time.

And of course you don't have the ability to get all of these diagnostic procedures. So, yeah, I mean, I just on so many levels, I was lucky and it infuriates me early on in the process, for instance, um because the first process and I don't know if this is everywhere of this, just in Washington State, you have to first go and apply for. Um I think it's Medicaid, the state program and, you know, it was funny because I was sitting in the waiting room and I was watching all these people kind of ahead of me and they were all going up to these um these caseworkers that you just kind of got a sense they weren't, you know, these case workers were just sort of going through the routines, they weren't really, you know, so I was very anxious about that and there was this one worker that I noticed, I'm like, you know, um and I know that you shouldn't judge people by the cover, but um I just noticed her, I'm like, oh she seemed like she really gets it and I'm like, I wonder how fortunate I am going to be whether and then I ended up getting her and she was one of the most amazing.

She was a social worker and she was absolutely amazing and she went above and beyond, She eventually retired unfortunately. Um, fortunately for her. Um so again, you know, I was lucky in so many different levels and it angers me that I was lucky, you know it and again, there's a lot of guilt because why can't it? And when I say I'm being lucky, that's not to say that it was not a struggle because it was a bureaucratic nightmare nonetheless, But why shouldn't everyone have a supportive social worker, someone to walk them through the process?

Why does this system have to be so debilitating and expect when you're already sick too? That's what's so insane about this to me. Yeah, I think, yeah, absolutely, it's such a great point and one of the things that you um that you bring up is that it's already hard enough to have somebody in the medical system say, oh I hear you, something is wrong, we are going to figure it out. And so that year when I got that doctor who was able to say, I don't know what's happening, but let's keep digging.

It was amazing. Of course she was a resident, she was gone two months later, but she got me going in the right direction at least. And you know, one of the things that I was so surprised by is that the Social Security disability process, just gaslights you left and right. And that coming off of like being gas lit and not being believed, especially when it comes to chronic pain because then you're seen as a drug seeker and the screening that goes into that is so deep dehumanizing.

Um and then so then you start going to these like I was I submitted my document saying I have chronic pain, I had endometriosis and um I think at that point I had already, I had also had a diagnosis of depression and anxiety and which often all of these go hand in hand. And so instead of sending me to a doctor to be evaluated, they actually sent me to a therapist who wanted to talk more about my home life with um uh than than like how my body was doing.

Now I want to say that those diagnoses and after all of that time of being told something as everything was fine and then getting diagnosed with these things. I actually knew that I had in mind body disc to connect. So I was ready to get to work. Um but the way that she handled it was to say that I was fine, that I was stressed and I was fine. Well okay. But what is the nausea, what is the back pain that I've been having for years tell me about the migraines And if we had a process in our country where somebody could take some time off of work to heal, maybe this wouldn't be an issue.

But within the time that I had my F. M. L. A. Leave, my superintendent's office started bringing up reasons for why I needed to be pushed out. It turned out within the course of that school year. They also pushed out the three other women who had chronic illnesses because we were costing their insurance so much money. So these were very difficult challenging times to be in a catastrophic situation that I never thought I would be in. And um I've actually read the book that um your author wrote Social security disability revealed because I needed to have somebody, I read the description and I needed to have that somebody tell me that this wasn't just me that the therapist who diagnosed me as being fine was actually working for the state.

You know, these types of things. And so reading this book really helped me to process some of the trauma that has gone around this thing. So I am now I have been denied now multiple times. Um I have had two hearings over zoom um and it's shocking to have judges who get to go to work every day and do a job that pays them do a job that they trained for for them to say this person could actually work if they tried because I have tried and thankfully that is the one benefit of this process is that you do have, you have the process to make work attempts to try to figure out like is there a new way as I heal as my body changes?

As you know, as as the, I don't know, it seems a little impossible most days, but there are opportunities at work attempts and so I have tried things here and there um which honestly can be pretty destabilizing. Um I tried to do a job that was way too challenging for me and I was out of commission for two weeks. I had thrown my back out while I was doing it and so while it's a neat like process that you can do it, it's a pressure for somebody who's really struggling physically.

Um My case is now at the federal court level, it's now there for the second time. Um My first lawyer was really pretty not great, He really phoned it in and he didn't make sure to have all of my health records, he didn't make sure to understand the narrative fully. He didn't understand um how to do a call that would yeah, he just didn't really um help prepare me a whole lot, but um Still having him do what he did, I was gonna get denied anyway, I haven't invisible disability, I was 40 years old.

Um and I had known from this family friend like what the chances of me getting um getting this first round acceptance was going to be really hard, you know? It was really hard too because like they wouldn't allow me to bring in past medical records from like all of the years that I have been complaining about chronic pain, they only were allowing me to bring in like what this this thing right in this moment was and so even my hysterectomy and my you for ectomy which had happened um in the meantime, they weren't really allowing that to be part of the narrative in some ways.

Um and it was just, I would get the first denial that I got was after hearing. Um I had had the hearing in in sometime in november and it was pretty, they tried to get the the case is decided by the end of the month, I guess. So I was ready for that and um I got home from thanksgiving with my ex's family and the decision was in the mail and the words that were said and twisted from not only my testimony, but the doctors, medical evidence that I had submitted was so destabilizing to to see my life be discussed in a way that was anything other than I am being truthful about my own experiences.

The worst thing in the world was having to decide how I was going to live at 39 Or 40 without a job. And I put my trust in my ex and he made it less than a year and a half before the pressure of supporting somebody else was too much for him. And you know, I went through surgical menopause at the time, I wasn't an easy, I wasn't an easy person to be around either. Um, and, and even then, even with all of that medical evidence. Now after all of this time, I was still denied again this year.

Um after another zoom hearing. And thankfully my lawyers have seen something in this case that they believe will help other people in the future as well. So they did take it back to federal court and they are not allowing it to be remanded back to Social Security this time. Social Security was able to take it back after the last federal appeal and re hear my case. They were told to re hear my case. And um, that's when the second denial or this might have been the third or fourth denial.

I'm not exactly sure, but it was actually with this denial. When it came I asked my lawyer as I said, I would actually really like to not read this, Is that okay? And they said yes. Um and I said, great if there's anything else that I need to know beyond like the basics of what you need from me, like let me know, but I can't keep reading the thing the way that the government literally takes one thing and flips at 100 and 80 degrees. Like I specifically said in one of my testimonies, I joined the climbing gym in my neighborhood because they had gentle yoga classes which none of the yoga classes in my city had except for really it was hard to find these.

And so as somebody trying to strengthen and be present, I was like, okay, I'll be there. And so this climbing gym had classes, they had a low income rate. Amazing. Great, I'll take it and they took that and I don't even remember how they manipulated that information. But this thing that like was such a joy in my life, became the way that the government was able to deny me my right to something that I paid into for the whole time I worked. She's up there climbing mount Everest.

You know, look Yeah, yeah. You know, it's also so interesting how race plays into this like the way that people talk about um people receiving benefits as though it's the the marginalized in our country when often most often it's white people using it. Like I've just learned so much about this process as I've gone through it. Um, but something you really talked about and I really appreciate you giving the opportunity to talk about this because it's so rare to talk about these types of things without being further gas lit, You know, without having somebody say, oh well it must have been your lawyer.

Well, it wasn't just my lawyer. I knew I had a 30 or 40% chance max and that was without my age. And you know, the joy that I bring to a room, right? Like I'm not present. I mean the only way that people know that I'm hurting is if they know me well enough to be able to see a migraine in my eyes and that's it. Well, and you know, the other thing too is these hearings, uh, last like five minutes at least my record collection. Right? And, and this is what you mean.

Nothing else really matters other than that five minutes and you're just hopeful of the judges read everything and that and is listening. And of course this is a judge who's probably had, you know, a dozen or more cases already that day. Um and in that five minutes, Yeah. You know, again, I was lucky because I got denied after my first, I think you, I think that's just standard. I think everybody just gets declined denied after the, you know, because it's just insane. But um you know, when I went before the for a judge and I was even told by my attorney, you know, this judge is really stringent.

She's, you know, she's she's kind of, she's gonna, you know, deny this. We already know that, but don't worry about that. You know, there's a whole process. Well, it turned out that the judge just like looked at me and was like, well he's in a wheelchair, he's on oxygen. Why is And she just approved it. Um right there. Everybody was just shocked and I had a good attorney too. But you know, so I was already, but and here's what people don't for me, I was very resistant to this whole product because I wanted to work.

I mean, you know, I had a difficult childhood where I was teased a lot and and so work to me was sort of like putting on a performance right. I got to be kind of someone else. And that was what, and at one point, even during the process, I'm like, you know, screw this. I I went off, you know, um the Medicaid, I'm like, I want to go back to work, I think, you know, I'll just push through it and, you know, kind of like, what you talked about, it was great for the first month and that was another time during the job where I was actually working.

Um and on the job, I I literally just collapsed and I had to be rushed to the hospital and you know, my, and I'll state that my, the therapist that I had the time, the social worker at the time and the doctors at the time, like don't do this, you cannot work. It's, you know, you're just going to, but there's this perception of people that, that all these people are just, you know, they're living high on the hog and they're, you know, that's not, that is not remotely, you know, the case.

And even after Even after 20 years of working, I think that I would have received $1700 a month. And when you add up everything, when you add up rent, when you add up, um, anything, the cost of public transit, I don't have a car. I live very meagerly. But even that even if I were to get that amount of money today, I don't know how that would support me person in this world. It's insane. The cost of living is increasing benefits and wages don't go up. Um, and, and it's also, you know, the other thing that, that kind of what you said was intriguing to me is is, and it's just ironic because things that you do try to do to help yourself that, that they should encourage, gets used against you, like, like when you join the gym, right?

I mean, it's like what, and that's where the dehumanization comes in I think because they have this impossible standard or perception of people with disabilities that I don't even think they fully understand. And so nobody that comes before them seems to fit that perception of what they think we should, you know, be like, you know, whether what we should look like or there's the idea like, well if you're on disability, you should just basically be bedridden and never, you know, be able to do anything. Um, and you know, people don't get that someday.

Just like everybody, everybody has days where things are good and you know, bad days. Unfortunately for people with disabilities, we have quite a few more bad days than we do the good ones and and we want to work. We want to be doing stuff with our lives, right? And that's what people don't get is that it's because I remember walking into that hearing room and I was in tears because I had to finally admit that this was real. This was the first, I mean, you know, going through the process was all one thing.

Uh, but when you're right there before the judge and that's when it becomes real. And I'm just like, you know, I felt at the time like this is a lose lose for me because either I get denied the benefits and then I have to go through this process even more or I get a proof of the benefits and have to acknowledge, I'm not, I'm never gonna be able to go back to work, like I used to, you know, and and that I think was even more difficult for me to accept than anything.

Um I kind of wanted at, I really kind of wanted to hear the judge say, hey, no, you know, because I was in a state of denial, and if the judge had said no, you're fine, go back to work, I would have almost been more excited at that prospect, because that's kind of what I wanted. And so I remember that being very difficult and and people don't understand that disability is not just a matter of not being able to work. It's it's an entire way of life.

It strains everything emotionally, physically, socially. Um it's very inhibiting You. You're so right. I mean, since that, since my diagnosis, and since I applied for disability in 2018, I have lost the majority of my community, um and I have lost my marriage, I have lost my support. I mean, the intensity of what disability means in our world, that only wants to see things through this lens of toxic positivity we showing up and saying like, oh no, I have to live in the world in a different way, is quite threatening to people.

Um because it means that they have to look at themselves, I think, you know, And so, but yeah, you're right, like hearing, going into that room and trying to convince somebody who has a government job for the rest of their lives that I didn't mean to stop working My job that paid me $57,000 a year, right? Like it's not like I was making tons of money, but I was making enough to support myself and living- Okay life where I was living. And so for them to think that I would walk in the room with anything other than I need help.

Can these safety nets that our society has put in place? Help me. The answer was no, well and let's not forget to the investment that you put into your education into your career. Oh my gosh. Yes. I mean, so it's like I have, I was in the middle of a second graduate degree. Um so that I could do my job better. I mean like I was not playing around, I loved to work, I loved to show up and do my job and in whatever capacity that was.

And yeah, you're absolutely right to say that I could in the hearings, I don't know if you had a vocational expert, but in my second hearing, thankfully my lawyer said, so what they're gonna say is probably gonna be pretty upsetting. Don't pay attention. Like you can ignore it because they go and say like all these jobs that you as a disabled person should be able to do. Yeah, I don't think I had that for that would have again. That would have probably would probably would have liked to hear that.

It's like, well, okay, I'll take that. But you know, what might have helped me too, is that before the hearing is when I actually had attempted to go back to work and collapsed on the job. So that might have worked in my favor. I do remember that there being some sort of a therapist guy there who um I had a bad feeling of walking into the room and he kept staring at me, which was very discouraging, just not not helping with anxiety at that point. And um and it turned out that he basically, and and that's when I kind of broke down crying is when he acknowledged this, there's there's, you know, and it was almost like a death sentence, the way he said it too.

I mean, there's not, there's really no way that rather no matter what the outcome, there's everything that they say in that room, everything that they say and you know, good or bad as some people might perceive it, it's not good. It, the way that they talk about you, even in the most positive of light is objectifying. I mean, it's like you're not a person, you're um yeah, I I I couldn't even read the stuff, I mean, it was just like yourself, I just didn't want to and I didn't read the first denial either.

Um, you know, because it was just, you know, it's just really difficult. And again, I I was fortunate to have had a good attorney who really kind of knew what she was doing and um, but yeah, people need, I mean the general public especially needs to have more awareness because there's this mentality that can't happen to me and you know, when it does, it it um wow, it's a gun, you know, punching the in the gut or that if it does happen to you, that the system is going to work in your favor.

And they were told like, oh, we pay this tax because if we get hurt or if we get disabled or this or that or whatever, that it will work for us. And you know, I recognize the privilege of saying that as a white woman in our society to that like systems had worked for me often until this, not always but often and so I want to recognize that privilege and also address that even for somebody with great privilege, they are treated with the most dehumanizing ways about to go about things.

Um, and that's pretty much the legal system in general. I, you know, I've recognized I tried to get um times for my divorce so that procedures could be later in the day because the time difference was hard and it was hard for my body and the court system just ignored my doctor's request. Um, so you know, now that like I know more about how this legal system works. It's not quite as much of a surprise. Well, let's just say the way the system doesn't work because really, I mean the legal system, the problem in this country and that's one of the things that I wanted to do with this show is talk about the way that in this country, the wealthiest country in the world, um there's a we have a massive failure of government and we have a government that seems to benefit a very select few.

And you know, and poverty in this country should not be a thing. Uh you know, going without health care should not be a thing. Um struggling like what you have should not be a thing. Um And I wish I could just give you a hug and and I I wish I could. I wish I could tell you that everything's gonna be okay. Um now I know you have to run. Um so and thank you so much. You've been so generous with your time too. You're welcome. Can I shout out the black panthers in my neighborhood for doing the free food giveaway because they have sustained me for the last several months.

And you know what? Um do they have a website or any place where people can donate? I don't think so, but just a community based work is really amazing. Yeah. Thank you. Thank you so much for having me. I hope you get approved. I hope this ends this part of the journey ends soon for you. Me too. Thanks john thank you for having this conversation. It's important. Bye. Thank you. Okay, coming up. We have a former member of the Social Security Administration uh and he is going to be joining us in just a minute.

But um the book that we talked about uh that I want to um my producer actually asked me if I would share a review that she wrote of this book because she was very um impressed with this book. So, steven steven Spencer ambitions is the author of the book. Social Security disability revealed why it's so hard to access benefits and what you can do about it. This is my the review that my producer posted to amazon. And uh I would like to go ahead and read that uh if you don't mind, this book is essential reading for anybody who has an interest in navigating the very frustrating process of applying for Social Security disability insurance.

The author exhibits sincere empathy and compassion for aspiring claimants as he outlines the steps a person must take to receive the disability benefits. They are due S. S. D. I. Is a complicated subject with lots of specific terminology, but visions, visions presents the information in an organized, simple and straightforward manner. Furthermore, ambitions repeats and or reviews what he has told us in an appropriate way that serves to remind the reader of key points without sounding repetitive or annoying the Social Security administration uses many many Ackerman's Ackermann's.

So I greatly appreciate the glossary of terms at the end of the book. For those times when I forgot what Rfc stands for. In short, this book is an easy read as bishops manages to explain an incomprehensible system as comprehensively as it can be possibly be explained. Well, it can be disheartening to hear from an insider that the cards might be stacked against you when you submit an application for S. S. D. I. Reading this book will prepare you for the battle ahead and provide the guidance you need to achieve the best possible outcome for your claim.

I highly recommend this book and folks I to holly recommend this book. Um although I hope that you don't ever have to read it, I hope that you never face these circumstances, but you might want to read this book anyhow, just so that you're prepared in case you can because believe me, catastrophic health issues can come up at any point joining me now is the author Spencer visions who I'm I'm terrible at pronouncing names and I'm sure I'm screwing that up. Um Spencer, thank you for joining the show.

Um Thank you. Thank you for having me and by the way, just real quick how about the Mariners playoffs first time in 21 years. Yeah, I worked at the Tacoma hearing office in Tacoma Washington. So I am a fellow washingtonian. Very, very excited that the Mariners finally made it. Well now I'll be honest, I'm not really a sports person but um yes, it's, it's great for our local teams and I happen to know that uh this is a monumental achievement so hopefully it will continue. I wanna thank you for um for coming on the show and for for writing this book.

Um Yeah, tough subject. It really is. Um I'm not sure that we're seeing there might be a technical issue going on because I don't think that um you're you're showing up on the screen. I can see me okay my um oh there we go, Here we go, I saw you earlier cause I remember seeing your shirt. So um you know the guest that I just had on Emily um what? Well here, why don't you share the your your experience? I mean you worked as an insider, you, you know the system, what what was most shocking to you?

Honestly, honestly not, nothing was shocking. It was an incredibly run of the mill scenario and just so your audience understands I was not a judge, but I was an attorney that worked for the hearing office and it was my job to actually write the decisions. So for example, I would be the one who would say well the claimant joined a gym, so obviously that person must feel physically fit enough to be able to go work out on a regular basis and therefore that person can work. That was my job.

It was my job to take the decisions, the judge would say approve it or deny it. And my job was to take the evidence, whatever was in there. And if it was an approval talk about all of the, the evidence emphasize and find persuasive the evidence that supports disability and if the judge said deny it, my job was to take every possible piece of evidence that I could, that I could misconstrue. And I literally, that was my job to misconstrue evidence in a way that I could write a denial.

What is the, what motivates these judges the most. I mean um when they're making these decisions, do you think? So there's a lot of different personalities of course and everyone has their own background and their own history and their own story. But one thing that Emily pointed out, which is totally true, the judges make 100 and $80,000 a year in a sit down job, they all went to law school, so they're educated, professional school legal career, so a sedentary career where they're making a lot of money and they're working for the government, so it's not a lifetime appointment, but in practice, they can have that job as long as they want it and they're seeing people who did hard work, right, construction warehouse jobs, even working like as a grocery store shelf stocker.

They're seeing people who had to bend a lot, lift a lot beyond their feet for 10 hours a day Who were making 2022 grand a year, you know 11, 12 bucks an hour. Um and they're literally passing judgment on people who do work that they possibly could never do. And yet they're telling these people, I understand that you've got medical impairments but I think you can go and maybe you can't do that work. Maybe you can't go back and work in a warehouse anymore. But there's these other jobs that you can go do and so you're not disabled.

Thank you next. And I wrote for judges that had really high pay rates, 80-90% of their cases were getting approved. And I wrote for judges with really low pay rates and that's maybe like a 20% approval and a lot of it just has to do with their own personal situations. The judges that I noticed that had the higher pay rates. Big surprise they had health conditions, them or someone in their family had a health condition they had, they needed medical treatment. So when someone came in front of them and said I need help, I'm in pain, I can't concentrate, I can't breathe, I can't work.

They tended to look at those medical records and listen to that story and believe that person. Whereas the 44 year old for me, Army Ranger who's now in the reserves who's a veteran young, healthy fit, that's the kind of person who says why can work so why can't he denied And but I do wanna I do wanna say something else. The reason I wrote the book is there's a lot of things you can't control and I talk about this in the book. One of the things you cannot control is who your judges right?

But I want people to understand and this is the second half of the subtitle the what you can do about it. There are certain things that you can do to help improve your medical evidence, your medical record, your case presentation. It's like any other legal proceeding. You're telling a story, you know that you were in a hearing, you told a story, you have to present a story. Here's who this person is. Here's how they were, what jobs they used to do before they became disabled here their impairments, here's the treatment they're getting.

Here's they want to go back to work, here's their attempts to go back to work. It's all one big story right? And Even with the low paying judge even a judge who's paying 20% of their cases, what I try and emphasize in the book is that judges still paying one out of five. And so what you wanna do is if you're the claimant, you wanna know the system, know what you have to prove hire professional representative, I completely recommend that but they're not a substitute right? You have to advocate for yourself.

So you have to be your own advocate and hire a professional representative. And the two of you work together to present your case in such an airtight way that even that judge that only pays one out of five looks at your case and says you're the one out of five. I can't with a straight face deny this, I'm not putting my job on the line. I don't want to get in trouble if I get a medical record and medical opinions from doctors, if I have someone with such a clear situation that they clearly cannot work, I'm gonna pay that want to move on and I'll use my discretion to deny cases on the next four.

But you know the way you described your situation needing to use a wheelchair needing to have assistance breathing and I have no doubt that your medical records supported that. Some people think like oh if you go into your hearing in a wheelchair wearing a neck brace, you'll get approved. But no of course you had medical records that the judge saw and read and looked at before your hearing so that when the judge saw you that judge said yep that's exactly how I thought he would look. That's the person I was expecting after reading those medical records and those opinions from those doctors.

Everything seems consistent to me. This one meets the definition of disability that this one not meaning you mean in your case this case, the definition of disability and so you got approved. And then someone like Emily walks in non visible mental health impairments, non visible physical impairments. I heard fibromyalgia, endometriosis, depression, anxiety, there's no wheelchair, there's no neck brace and that's more common. It's more common that someone just walks into the hearing office even if they have a back or a knee condition. Most people don't need to use a wheelchair or crutches or a cane.

And that doesn't make them less disabled. Right? It doesn't mean you can work a full time work schedule because you can stand upright. Those are two different things. But when I hear Emily's story, unfortunately, that's really common. I I saw so many medical records when I was attorney, an attorney. Decision writer, Social Security. Fibromyalgia, connective tissue disorder. Maybe HIV respiratory impairments, not as severe as yours, but people have emphysema or COPD or asthma, a bad knee, a bad back, maybe a shoulder rotator cuff things that do not allow people to work a full time work schedule under the strict requirements that so many american employers have.

And yet when those people come in front of the Social Security judge to get the benefits that as you talked about they've paid for, they're entitled to, they've been told those benefits will be there for them. And yet when they actually say they need them, they're told that they're not disabled and Emily used the word gas lit and yeah, lots of people are gas lit And unfortunately my job was literally the for I was the person who was gaslighting you not you because you were approved and not probably statistically, probably not Emily.

But I wrote a lot of denials and some of them were appropriate denials because the definition of disability is extremely strict. And so some of those people truly didn't meet the definition under the law. But there are a lot of cases that I saw that if I were the judge I would have approved it, the medical evidence was so substantial and convincing to me that I would have approved it. But the judge who heard the case said deny it and my job as a staff attorney was to do what the judge told me to do.

So if you wanted to write those denials, but I had no choice do judges with that high pay rate, Do they, do they experience pressure from, from anybody above them to to lower those pay rates to to to do more declines. Yes, major pressure. And so here are the things that I saw and observed when I worked for Social security, one Judge lost her tele work. Another judge was put on probation. I saw a couple of judges that it's really hard to fire the judges because they're in a union.

But there are ways that the agency can make their work life so miserable that they basically, it's a concern what lawyers call constructive termination. In other words, their job became so awful, they just felt like they had no choice, it was just easier to leave. Uh I saw probably the most extreme thing that I saw is judges being given extra training because they were paying too many cases. But of course, the agency didn't say that because they're independent decision makers, right? So there's no such thing as paying too many cases, except that the agency literally tracks the approval rate of every judge and every hearing office and they know which judges are getting outside uh standard deviation or two standard deviations away from the average and they can target those judges and basically tell them, you know, we think maybe you don't fully understand the definition of disability, so we're gonna give you some extra training And if you're the judge it's do it or leave, they don't have a choice.

So yes, I saw when I was in the agency, judges with high pay rates being given these consequences. I don't think there's any other label for them right there, consequences. But the judges with the low pay rates that were paying like 20%,, I never saw any similar type of consequence for any of those judges. I'm not saying it doesn't happen. Obviously, my experiences in that regard are somewhat anecdotal um when I talk about the cases, I saw, I mean, that's thousands of cases, that's a large sample size.

When I talk about what I saw as far as how the judges were treated, I acknowledge that's more anecdotal, but I have spoken to other people and I'm not sure that the agency really comes down in any way on judges with low pay rates. I think they want to see low pay rates. You know, one of the things that I wanted to ask you about, um I wrote down some notes because I mean this stuff does get incredibly complicated. Um What is the low threshold, the substantial gainful activity role and why is that important?

The substantial gainful activity rule which will translate that into normal human English for your audience, it just means it's how much you can earn and still be a disability applicant. And that number creeps up a little bit every year. But I believe for 2022 it's $1,350. So in order for social security to determine if you're disabled, they go through this five step sequential evaluation process, which I talk about in part two of the book. But the very first question is, are you working? And the way they determine if you're working is actually not how many hours you're working.

It's a dollar amount. And the way they get to that dollar amount is essentially think about minimum wage, times 40 if you do minimum wage, times 40. Uh I don't know exactly what that would be, but it's gonna bring you somewhere around the substantial and the federal minimum wage, right? It's about seven bucks an hour. And so if you do that times 40 you get $280 a week. So that's like, I don't know somewhere between 11 and 1300 bucks a month. So that's what they're doing essentially. Um is they're saying, look, if you can work 40 hours a week and you can work at the minimum wage because that's all you're legally required to be paid.

Uh then we're gonna decide that you're not disabled. Whatever job you did before could have been an orthopedic surgeon making $1 million bucks a year. I don't care about what you did before. We care about what you can do with your medical impairments taken into account. And so that's the first question is, can you work? And so this is why someone like Stephen Hawking, for example, would probably not have been found disabled by the Social Security administration. I know that near the end of his life he was had would have aged out of the Social Security program.

But even earlier on if he's working and whatever work means where it could be being an author speaking engagements, I'm sure he was getting paid for appearances, he's making more than $1,350 a month right there. He's not disabled under social security's definition and therefore he was not have been eligible for Social Security benefits because he was able to work after you're not working. Then Social Security asks about your medical impairments for. The very first question is, are you working? And then if you're a beneficiary such as yourself, that number comes down even more.

It's under $1000 a month for this year. Um that you can earn and still collect benefits. A lot of people don't know that you are allowed to work legally and still collect benefits. So you talked about how you want to work. You can work and still collect benefits and that's perfectly legal. But if you earn over a certain amount, then you'll start to what I like to call graduate from the S. S. D. I. Program. And if you do that long enough, then they'll terminate your benefits. Wow. Yeah.

I mean, I just basically um kind of, you know, I mean, other than the show, I also co founded a nonprofit um because you know, I I have to be doing something right, But unfortunately, no employer would would touch me because I mean, there are just complete days. I mean, where I can't do hardly anything. Um and of course, we know there's not supposed to be discrimination based on disability right? In the United States. In theory, we have legal protections. But of course we know those are not as strong as legal protections for race or gender or religion.

In other words, in the legal world that's called a protected class. Some being disabled. You're not a protected class in the way. National origin, religion, uh sexual orientation. These identities are really important. But the identity of being disabled, even if you're disabled under Social Security's definition, there's you can still be fired or not hired. I think I heard Emily say she was fired simply because she was costing the insurance too much. I mean that would be really hard to prove right. All they have to do is find any literally any other reason.

Oh, you had to go to a medical appointment. So you missed the day of work. So we're firing you. And it's it's like the disabled community. I do feel like it's the last community in the United States where it's generally accepted amongst the american population that it's okay to discriminate. I'm not saying it's okay to discriminate. But you talked about how difficult it is leaving your house because you know, we've had the A. D. A. For 30 years and we still have been a very able ist society where public transit is hard.

You live in a city with a lot of hills. Yeah, around. I kid you not, I kid you not one of the during the process, one of the evaluations that I actually had to go through was any place that was not wheelchair accessible. It was on the second floor and they only had stairs. No elevator. Yeah. And this is for and you know what I you know what I would have been told to say in the decision denying your claim. I would have been told to say the claimant did not cooperate when he failed to attend the consultative examination.

Well no I ended up having to climb the stairs. But that but that does happen and people leave. They can't get in the building so they leave. And then the report says the person was a no show. And then the judge says they're not cooperating with Social Security denied the claim. That happens. And it's absurd and it happens when when a social security judge wants to deny your claim, they're going to find a way to deny your claim. And I talk about this in the book. The rules change for people over 50 and 55 where it's actually easier for people to get approved as they get older.

But a judge that wants to deny your claim, they will find any possible way. around the rules and they'll tell someone like me deny it, deny it, deny it. And there are some judges that I was able to talk to and I work for Social Security that were really open minded and I could be handed a denial and go back to that judge and say but we have this evidence this m R I report this medical opinion. I think maybe we should approve it. And I worked for a lot of judges that were very open to that and they say, you know the evidence better than I do.

You're the one writing the decision, go ahead and approve it. And I was able to get a lot of denials flipped to favorables when I worked there because the evidence supported a favorable decision. But there are some judges who just will not budge. And so there are a lot of denials in this country issued for people who in my opinion as someone looking at the evidence who really deserve those benefits. Yeah, No, I know it's it's incredibly disheartening because you know, it's again, there's it's a struggle in itself being sick and being disabled and to not be able to work and be told that you you can or that you have to.

Um and what people don't understand too is like, like you just said earlier, um, you can be discriminated against effectively and so you are, you are not even can people who are disabled or are discriminated against every day and especially in the workplace, I mean an employer doesn't have to hire you. They don't have to say, well, you know, well because you're in a wheelchair, all they have to say is, well, you know, we're better, more qualified applicant or anything and things happened there related to someone's disability like missing too much work for medical a pair mints.

I couldn't leave home today. I had to call in sick or I had to go to the doctor And these are things that should be protected but we don't have mandatory leave in this country like I think in the EU and in the UK It's like a mandatory 25. I don't think there's a country in Europe that has less than 25 days of mandatory leave. And in the United States zero there it is zero employers are just they're not required. So there is a law that says you can't be fired.

You know if you have some kind of the the family medical leave act can't necessarily be fired, you get 12 weeks but that 12 weeks is unpaid and 12 weeks goes by really fast actually if you have disabilities. So even people who put themselves on F. M. L. A. Time that's not really a great protection when you're not being paid in, 80% of households are living paycheck to paycheck. You can't afford to this even one day. And then for other people they're not on F. M. L. A. They just miss a work day.

And and then you know like Emily the employer goes okay we got to get rid of this person, let's consult our legal staff and figure out how we can legally do that. Yeah. You know when when I collapsed on the job what what happened at that point was the employer said well you're kind of a legal you know we can't have you I mean what if you would hit your head when you fell, you know, and that was kind of the and to be, to be utterly fair, this was not something, I mean, they actually wanted me to stay and I wanted to stay as well.

Um it was if you could, they wanted you to stay as able to work, able to be there Sean, but that's not who you were at that point. Yeah, and and and that's that Sean just correct me if I'm wrong, but the sean that they wanted didn't exist anymore at that point, that's true. They wanted, they wanted someone who you you really never were capable of being and actually, possibly it was the case that you collapsing on the job that actually could have helped your disability claim.

I don't want to encourage anyone to do something unsafe. But it is a fact that those low paying, you asked about those lower paying judges. And this is true for all judges, but this is particularly true for those lower paying judges. They're looking to approve cases that one out of five that they approve. They want that to be someone who doesn't seem to have a sense of entitlement, a sense of permanence and someone who does is asking for those benefits on a temporary basis. In other words, I might be willing to approve you if you come to me and tell me you don't want those benefits or you're not gonna need them for very long.

And the fact that that was your position, you didn't want those benefits and the fact that you tried so hard to work that you literally collapsed on the job that judge doesn't want you going back to that job right? That judge says you've showed me enough. I believe you, I believe you wanna work. Don't keep doing that. You're gonna kill yourself. That's what your doctors are telling me. That's what the er report is telling me. So you got approved because you tried your best and your best wasn't up to a full time schedule and for those lower paying judges, that's what it takes.

But that's what's really hard for someone like Emily who um she doesn't want to put herself in that position. Nobody wants to put themselves in that position where they're risking their life To prove to the social security judge that they can't work so they can get $1,500 a month. I talk in the book, a lot of people think, you know, fraud waste and abuse is a problem. And I specifically talk in the book about how fraud waste and abuse. That's not a real thing. That is a political talking point because no one would put themselves through what you and Emily have been through for $1,500 a month.

You spend way more than that in medical appointments and you know, if you were if you were able to work, you could go work and earn more than that quite easily. So I wanted to make sure your your your audience understands that that people like you and Emily and the one million americans that file the Social Security disability claim every year. Um they have medical evidence, they have to have a lot of it. It's got to show that they have at least 12 months of an inability to do any full time work.

They have to be medical tests, objective tests like Mri's in your case. Maybe pulmonary function tests for breeding impairment like the the judges and the attorneys, they are looking at hundreds and hundreds, sometimes thousands of pages of medical records. You can't fake this. And that's the problem is you have not the faking. But the the problem is you have so many people who need these benefits and so many people who have really good medical records that you just can't approve everybody. The Social Security system financially couldn't handle it if we approved everyone who asked for benefits.

So we tell everyone those benefits are there if you need them. But then a lot of people need them. And so Social Security says sorry, we actually can't approve all of you. We don't have enough money for that. And that's where the impetus comes for having to decide. Where do we draw that line between who gets approved and who doesn't. Now you touched on your book on something. This is a little bit off topic, but universal basic income. Um, can you kind of clarify a little bit about how um what your, what your position on that on that is and that is you, can you still hear me clearly?

Yes, Yes. Um so the 1st 33 chapters of the book are the current system. And then in chapter 34, I try and get a little bit more positive and say how could we improve the system? Because it's absurd as we, everything that's led up to this point, we realized this is a pretty absurd system. And during the last presidential election we had Andrew Yang talking about a universal basic income or UBI. I and he was saying we should just give everyone 1000 bucks a month. And the easiest retort to that is how can you pay for that?

But but actually it's actually really easy. I've done a calculation where I've added up all of the different public benefits, federal only federal public benefits snap with school lunch, public housing chip program, Social Security, you had all that up and you divide it by the number of american adults, I get about 800 bucks And that's not even including the bureaucracy that's necessary in that apply and approved system. So if you don't have to approve social security is like 50,000 employees that almost exclusive exclusively handle social security disability cases, you would need almost any of those people if you didn't have the apply and approved system. Right?

So 1000 bucks. It's really not that out of the question. The other thing that I want people to understand is we literally had three U. B. I. S. That went to almost every american in the last two years. Right? The I. R. S. Just handed every american a chunk of money and those that chunk of money changed and it was dependent on if you had kids. But we basically had three U. B. I. S. Where the government just said here take money and it seems like it would be really expensive.

And the pandemic you be the pandemic economic impact payments. They were expensive because the government was not prepared for that situation. But if we were more prepared as some countries in europe were And we were giving every American adult $1,000 a month. How many times did you hear a news story about people having to run to the unemployment system and the unemployment system failing? I know it did in the state of Washington. How about um people being unable to get their checks deposited? People not knowing if they qualified.

How many stories did we see about rent relief or mortgage relief? Right well if everybody had $1000 coming in all the time and again all we have to do is eliminate all the other programs and that's where we get to that And $1,000 a month. It's not a lot, right? You're not sitting on the beach eating lobster. But it helps in a situation where you don't have to worry about paying your rent. If you lose your job, if you can't work, you're not gonna become homeless. It's like the bare, bare minimum, right?

And then landlords don't have to worry about getting paid those mortgage. The mortgage market doesn't collapse. We don't have people, you know, having to flood the unemployment system because it's a consistent benefit. It's reliable. And when you have something like that rolling in, you're able to focus on your health. If we had, I know you recently did an episode of Medicare for all. If we had a Medicare for all, if you couldn't work, you could still pay your rent, you could go get the treatment you need for your impairments, it would be much faster so that you can get back to the workforce faster and be paying back into the system.

And that's how things are done in a lot of european countries, right? They understand we we have to have this this higher public benefit. And when people say, yeah, but that's so expensive. How do you fund that? Well, they don't have people on disability for very long, they have sick leave. People can take the time they need, they can take care of their kids in Germany. You get to go to like this spa retreat for up to three weeks a year and it's paid for by the health insurance system in that country and it's a mental health benefit because they find they have statistics, actual science that says those people stay in the workforce longer.

They don't cost the company money, They don't cost the government money. These are investments in our people in our workforce. And we just don't do that in the United States, in the United States of a long history of workers being expendable. And it's certainly certainly better than it was 100 years ago where you had kids working 60 hours in in a mine or a factory. Right? I'm not saying it's that bad things have improved over time, But they're slowly going in the other direction. The 40 hour week is becoming 45 or 50 or it's a 40 hour week.

But you can't make ends meet on that. You got to go take a second job and that's why it's 50 because you work an extra 10 hours on the weekend or at night. And the wages, you know, we have inflation. So those wages don't go very far. And so it's more hours. It's not as competitive people. People's minds and bodies just break down over time. We all have the same. I like to say we all have the same impairment and it's called aging. And so if you have no other medical impairments, you talked about how you hope no one needs the book.

But realistically, almost everyone is going to be able to work at some point in their adult life because of some kind of medical condition. It might be temporary, might be not so temporary. But this book is something that if, you know, if you haven't gotten there yet yet, at some point, something will happen to you or a family member or a relative or friend. One thing I've learned since working for Social Security, everyone knows someone who has applied for or is receiving Social Security disability. And if you think you think that's not me, it's just because your friends and family members aren't telling you.

But everyone knows I've had so many people who and I tell them what I used to do or tell them I wrote this book, they'll say to me, oh, I applied for Social Security, I got denied or actually you didn't know this, but I'm receiving Social Security. And it's just, I've learned that it's incredibly common. There's over nine million current beneficiaries. Over a million people apply every year. So that means 10-15 million people have applied in the last decade. You, you gave that number up front in your monologue.

It's not a small number of Americans And you talk talk about how we're the wealthiest country, but we're really not. We have very concentrated wealth. Right? But for that, 80% of households that have zero savings and live paycheck to paycheck you get just one paycheck. And what are you going to do? And those are the people who think it will never happen to them until something happens and they miss a week or two of work and two weeks of work. That's a paycheck and now they're in real trouble.

It doesn't take a lot. And that's frightening. And then a lot of people I think are in a state of denial about that. You know, that's why they say, well that will never happen to me because it is just too frightening to even acknowledge. Yeah. And you know if we think about how the system could be improved because obviously A U. B. I. That would take a massive attitude change in Congress, right? We know that even if Andrew yang gets elected president at the next election or even if senator Sanders got elected not going to get that through Congress and the president can't do that on their own.

So we're left with you know, what can happen? What small changes can we make? Is there any hope for meaningful change? And it'd be great if you had a guest that came on the show and said, yeah, I'm really positive. I have this really positive outlook. But actually I'm not gonna tell you that because my book is a realistic look at the process. That's why it's called why it's so hard to access benefits. I don't want to gaslight people I did that for too long. I gas lit a lot of people when I was writing decisions.

I don't want to do that anymore. So no, I don't think there's any real meaningful change coming. For the same reason we're not going to get meaningful change anytime in the near future on our health care system. There's too much money concentrated, there's too many powerful wealthy people, There's too much money in elections. The here's where I do have some hope cannabis. 10 years ago, there was really almost no legal cannabis. Right eight years ago, the state of Washington, Washington became one of the first two states have a system where you don't have to have a prescription and you don't have to like fake an illness, you just walk into a store and buy it.

And the reason the cannabis is becoming more mainstream, even though it's still illegal under federal law Is that the tobacco companies saw so many young people not turning to smoking in the last 20 years, they were turning to cannabis. So instead of fighting against cannabis and competing against Cannabis, they said we're going to get into the cannabis business and now the tobacco companies are in the cannabis business, it's becoming more mainstream. And the reason that gives me hope for things like health care or Social Security is if somehow the health insurance companies started finding ways to profit from covering everyone.

They start to cover everyone, won't they? Right? So something that everything could happen with cannabis is now happening and something that we didn't ever think would happen. The affordable Care act was a big deal when it happened when finally a pre existing condition you couldn't be excluded anymore. And the deal the insurance companies made was you get more people in and we'll promise to cover them. And now that's kind of falling apart a little bit because there's no penalty anymore. But there is a way we could possibly get back to that where if we promise that we're going to cover everyone, then maybe, and we and we promised the health insurance companies will get everyone to pay into the system and in europe it's a force payment, right?

It's that you pay through your taxes. You have no choice. And of course the health insurance companies where there is private insurance have to cover everyone. They have no choice. And I think maybe it's possible that Social Security could get to that system where if companies like health care companies, major hospitals, physical therapy companies, drug companies find that okay, if we can get more people on Social Security disability and help them get the treatment they need. Now we start getting big money, right? And big donors supporting the Social Security disability system.

But that's really the only hope I have that the money and the power in this country have to have it be in their best interest to expand Social Security to get more people on disability. I don't see it happening in any significant way until we get to that point, like we did with cannabis. Yeah. And there's also not the same social movement sort of as there was with cannabis to uh, in healthcare. Um, unfortunately. Well, the thing is again, we go back to everyone, nobody wants to see themselves as disabled.

Nobody wants that label. Everyone thinks they can work, we are conditioned as americans. What do we hear every election cycle? Self name, pull yourself up by your bootstraps, You can do it. But the reality is, I think two thirds of americans don't go to college or don't graduate. I think the vast majority of college degrees now are women, not men. And so we have this significant portion of males in this country of working age that don't have a college education. And so now you're including a blue collar jobs and there are some skilled blue collar jobs, right?

Like plumbing and electrical. But then there's a lot of jobs that end up going to immigrants because they'll work for less money. There's jobs that can be outsourced. And so we were competing not just with each other, but we're competing with the rest of the world in a global economy where we're being pushed and pushed and pushed longer hours for less pay. And again, that comes back to everything within our economic system is going in the wrong direction. And yet. And that might cause more people to have their bodies break down.

And yet we don't have a social safety net for them because a lot of those people vote in a way that's not supportive of the social safety net because at the moment they think they won't need it. I can't tell you how many Social Security cases. I saw where the person came in front of the judge and said, I never thought I'd be here. I never expected to need Social Security people from this. Lot of people from the south, a lot of people who you could just tell their conservative voters and now they're coming and asking for benefits and it really is this amazing dichotomy of I don't want to ask the public benefits.

I don't want any public benefits. I don't support public benefits, but I can't work and I need public benefits. Yeah. Why is there such a stigma of shame that exists in this country around asking for help? Well, I mean, it's a stigma, right? Why is there a stigma for anything? There shouldn't be because a lot of people need mental health treatment. And I will say this, I've been seeing a lot of commercials lately for companies that are doing mental health and counseling services online. So the fact that the affordable care act said mental health has to be treated the same by insurance companies as other health care.

Again, the money, right? Because now there's money to be made in mental health care. Now there's more options for mental health care and more options is great because a lot of people don't maybe don't have a psychiatrist in their town if they live in small town America. So the fact that you can now access services online, that's great. And I think that's helping to destroy that stigma because stigma really happens when it's other, the other people are needing something, it's not me, it's everyone else. And the more people that acknowledge their filing social security disability claims, the more people who say I have a non visible impairment, the poor more people who say I'm accessing mental health care, I need mental health care.

I need to leave work to go to my therapist appointment. I'm sorry I have to end this lunch early. I have a meeting online with my counselor in 10 minutes. That's more and more of that is helping to destroy that stigma. But it doesn't fit in with the leave it to Beaver, idea of work, right? The man puts on a thin tie and goes to work from 9-5 and sits in an office and works until the age of 65 and then retires that none of that is reality anymore and hasn't been for quite a long time.

But we still have these these anachronisms like a 40 hour work week, where'd that come from? In europe, they're now trying things out like a 32 hour work week and they're finding that people are just as if not more productive because all the time people waste on a 40 hour work week. So we are challenging things like the 40 hour work week. Like the fact that you have to go to an office, the pandemic taught us that so many jobs in this country can be done from home and that you don't need to in the snow like that's absurd.

So we are learning we're learning slowly and they learn faster in a place like europe where public dollars from their health care system so they have public incentive to figure out ways to help people faster and cheaper. Like I mentioned in Germany where they have really robust mental health care because they want to actually care for someone not wait until that person becomes suicidal and has a suicide attempt and ends up in the er or the O. R. And that's the most expensive health care you can get.

So the more we can invest in health care early on the better. And I do think we're getting there like these online counseling companies that's helpful, anything where we can help people get the care they need it faster and cheaper and and that all helps to break that stigma. But Social Security disability it's one thing to say I need some health care help that stigma is coming down but I can't work my disability that you can't see is so bad. I can't work Social Security gets your medical records, right?

But the guy in the next cubicle or in the next department over doesn't. And so they're still very much is that you look okay to me attitude. And unfortunately I just I don't see that going away anytime soon. But the parting thought that I want to leave your audience with is the theme of my book, is to tell you all of these barriers and we've laid out a lot of barriers in this show, right? You had barriers Emily had barriers. I've explained some barriers, but to know there are ways around those barriers that guy in the next apartment who goes, do you really need to be applying for Social Security?

You look okay to me, that guy's opinion doesn't matter. It's completely irrelevant. And there are things that do matter. And that's where I want people to focus their energy. And in the book, I tell you, here's what matters and here's what doesn't here are the things you can't control here are the things you can control, and that's where you should focus your energy. And if you focus on those things, I can't guarantee you'll be approved. No one can guarantee that, right? I can tell you hear things you can do and focus on to give yourself the best possible chance at success.

And yeah, again, I wanna thank you for for writing this book because it is such an invaluable resource and um the you know, I was fortunate enough to have kind of followed your advice without having, I mean this was before um this is quite a while ago when I was going through the process, but you know, getting an attorney uh for instance, not trying to do it on your own. Um you know, but I mean, I really wish I would have had your book back at that time because it would have been and again, I, you know, I think as you mentioned, you have to understand a system that is inherently complex to start with by design. Yeah.

Not not only not only complex, but specifically designed to keep you out. It's specifically designed to make you feel so disheartened that you give up and you quit and that's how they reduce the number of people getting to a hearing. And so when you see like, oh judge judges will say we approve 50% of our cases, but that's 50% of the people who get through that gauntlet and don't throw their hands up, give up and quit. So I interrupted you. But I want people to understand it's not an accident, it's not a loophole.

It's not like, oh man, it's like the system just, I wish it could be better. It's specifically designed this way and that's why it's so troubling because it's no accident that most people are denied at the initial level. Right? Right? Yeah. Um Yeah, and that's just very disheartening. And again, I like that your book is very honest. Um and and upfront about, you know, not trying to sugarcoat things or as Emily said gaslight because that that is even more debilitating securities and Social Security is going to gaslight you.

They're going to tell things like we're a neutral decision maker and you know, and and and like I said, when I worked for Social Security, that was part of my job. Right? But now I don't and now I want to tell you here's how they're gaslighting you. Here's when they're gaslighting you. Here's the truth and here's what you can do about it. Well, I know that you have to run. So I want to thank you very, very generous with your time. I'd like to put the graphic with your book back up.

If if um my producer hates it when I do this stuff. Yes. Social Security disability. Why? It's so hard to access benefits and what you can do about it. Did I did I get your last name right. Missions. Spencer ambitions were on amazon and paper book and the book for paperback and e book format also on Barnes and noble and bookshop dot org. You can ask your local library and all of those resources are at our website which is visions publishing dot org. Perfect. And we'll put that in the show description as well.

Thank you so much. This was an intriguing conversation. I mean, I I I learned a lot. Um and I want to again, I just want to thank you for the book and for for coming on the show. Um because I think that this was a conversation that's gonna help a lot of people. Yeah. Yes. Go Mariners. Ok, folks, we will see you next Tuesday at two o'clock. Um I believe next week we're going to be talking about the politics of policing. We will see you later. Thanks again.