TOAA Reflections
Why SSDI Isn’t Truly Helping the Disabled
By Melissa K. Vassar-Belloso
So, obviously this is not the regularly scheduled blog for this week but it’s something I felt like I had to write. I’ve been going through the appeals process for SSDI for months now and I received my third denial this week saying that their council didn’t feel there was a valid reason to review the judge’s decision. If you don’t know me and have the thought that maybe I’m just bitter and not validly disabled, you haven’t been around for many of my blogs. I am not just validly disabled but a potluck of every variety of disability to boot. I have fibro which gives me chronic and unpredictable nerve pain on a daily basis among other things, severe seasonal affective disorder that pretty much shuts me down for about 4-6 months of the year, autism, and social anxiety. On top of all that I also have very severe iron deficiency anemia that is currently dropping my iron at a rapid pace at a time when I have no way to get medical care. If you think you can’t die from anemia or it’s not serious, try reading the stack of blood tests I have that list my hemoglobin at the level of what you would find in a dead person. It can hit single digits and it can kill you without treatment.
So yes, I am definitely disabled and if you really stop and think about all those conditions I listed happening together and how miserable they sound, you might understand who this article is meant to represent. A lot of disabled people are made to fight for SSDI after literally paying into it and I am one of those people. I’ve worked, sometimes multiple jobs at a time, having to do 150% to overcome my disabilities,losing jobs unfairly and having most of that money go into paying for medications or being able to get treated so I can stay sane and keep working. It’s a vicious cycle millions of people are caught in because of the joke department that is the Social Security Administration not being able to truly take care of the right demographic of people or even see them as real people and not a form on a desk. But rather than dump, I want to try to take the approach of looking at what exactly the good old SSA is doing wrong. Complaining is easy but forming an actual opinion takes work.
Disability Myths & the SSA
First off, I’d like to address a few myths that seem to be the rotten cornerstone of disability determination.Some of these may sound stupid or may be even blatantly obvious to you but they are based on real arguments that the SSA used to deny me.
Having work history doesn’t mean I’m not disabled.
When I went to my appeal hearing and talked to the people in the waiting room, we all had something in common. We were all people who had fought hard to work and overcome huge obstacles, paid into social security and now had a huge fight because we were under the impression that meant something. Thousands of applications get denied by the Social Security Administration because work history is held against you, but the truth of the matter is that working then doesn’t mean you can work now.
Any person who has had to deal with chronic illness knows about that period of time where you try. You push yourself as hard as you can and then eventually you can’t anymore. Meanwhile you still have bills to pay,still need to eat and still need to get medical care. You make the logical assumption the deductions from your paycheck will finally pay off and you can count on Social Security but that is very wrong. The goal of Social Security is to overwork the majority and support a boxed in minority, not to reward your hard work or allow you to utilize the chunks of money stolen from your paycheck over the years. The bottom line is that the SSA doesn’t care about hardworking people. They care about keywords and very specific red flags. They will use you having any substantial work history as a reason to deny you because to them if you have worked while being disabled, you obviously aren’t that disabled.
Working with a disability isn’t a sign of health. It’s a sign of determination and just because you are doing it doesn’t mean you’re healthy enough to do it. It just means you understand sacrifice and pushing yourself beyond your limits. It means that at one time you didn’t want to throw in the towel and give in to your disability. If you’re like me and you were told by the SSA that you weren’t disabled because of your work history, understand that’s a knee jerk response from a heartless government agency and not a true reflection of who you are. I understand what it’s like to drag yourself through a shift smiling while silently having a mind-numbing panic attack and level 10 back pain that makes you want to cry. No person and especially not the SSA has a right to downgrade the struggles you’ve gone through to get to where you are. Never be ashamed that you’ve worked hard and never be ashamed you had to ask for help when you can’t work anymore.
It shouldn’t be a privilege for a hard working disabled American to get SSDI. It should be a right. It shouldn’t be a battle where you get yanked around and shamed. It should be an acknowledgment that you’re human and all human beings need and deserve help when they’re ill. If you worked hard,couldn’t do it any longer and got bullied by the SSA for having a work history, please don’t take it to heart. You worked your hardest and you’re still alive despite life trying to push you down with a disability you never asked for or deserved. You’re amazing and you have the same rights as anyone else going through the SSDI process. Don’t let yourself get pushed around and don’t let the SSA or anyone else make you feel bad for working, because at the end of the day your strength and work ethic can save your life and help you get to a better place in life.
Being intelligent,friendly and clean doesn’t mean I’m not disabled.
One of the things that the SSA has as part of their process is a “psychiatric examination” and if you’ve ever had to go for one of them you’d know why it’s in quotes. The “psychiatric examination” is actually an IQ test. They ask simple logic and reasoning problems but never actually discuss your disability. I actually noticed the “doctor” that did mine skipped about three pages of evaluation that concerned work functionality and the resulting incomplete examination was used heavily throughout the determination process. I actually brought this fact up to the “judge” at my appeal hearing and it wasn’t even taken into consideration. I even stated I would make the trip for a full examination to be done so the issue could be corrected.
The one thing that should have mattered was work functionality if I’m applying to prove I can no longer work and since it was so readily swept under the rug by I assume they either weren’t counting on me reading the case files or just didn’t care. I honestly think it was just part of the scamlike formula that is the SSDI application process and they just bank on people either not having the patience or intelligence to pick apart the case files sent out during the appeal process.
But what they do pull from the “psychiatric examination” is how you’re dressed,if you’re clean,your manners, and your intelligence. None of these factors actually have any connection to disability. There have been recorded geniuses who couldn’t function enough to live independently. There have been well-dressed and sociable people who have suffered significantly from mental illness. Just because a person brushes their teeth, has more than half of a brain and uses pleasantries doesn’t exclude them from being disabled. Plenty of not well people still take care of themselves and think, and in the same strain a lot of dirty people of lower intelligence are perfectly healthy people. Disabled people come in all walks of life and the determining factor can’t be something as generic as whether they got dressed properly and washed. It definitely shouldn’t be a bunch of pointless logic puzzles.
Being young doesn’t mean I’m not disabled.
The world of disability is rife with ageism. You will learn this very quickly if you are under 40 with a physical disability. I actually went into my appeal trial on a cane and I’m in my early thirties with the a face that makes me look in my early twenties. Walking with a cane is something that I’ve needed to do for at least three or four years but I only recently got to a point where my pain was severe enough that I put my pride aside to start using one. Despite that, I still get a lot of reactions where people don’t think I should need it because I’m young. Youth doesn’t lessen pain. Youth doesn’t cushion the blow of any known disability for that matter.
We have a strangely marginalized view of who is affected by disability in our modern world. We understand children can be disabled and we understand adults can be disabled, yet so often people forget the gap between those points. Disabled children don’t just magically turn into disabled adults. They become disabled teenagers and then disabled young adults between those two extremes. If you can wrap your mind around that, you can imagine the difficulty proving that as a young adult you can’t just give life some elbow grease and get over it without the aid of SSDI. That’s not how youth works. I might look 20 but that doesn’t bar me from having health problems. Youth is not medicine. Disabilities don’t care about statistics. They don’t discriminate. That means no matter what your race,gender, age or whatever else is, disability can still fully affect you. There are a lot of good things to appreciate about having a nice youthful face as you grow older but if you’re seeking disability, expect it to work against you. The SSA equates being young to not being disabled.
Disabilities aren’t scheduled.
The SSA seemed to want to evaluate each of my reported conditions separately and there’s a huge problem with that approach. Disabilities don’t take turns or work on a schedule. They all happen continuously and simultaneously. In my original denial letter they wanted to break out each condition and explain why they weren’t severe but what should be happening is that there should be consideration for the sum of conditions when someone reports multiple ones to the SSA.
My anxiety isn’t going to take pause and say “Oh, you’re having sensory issues today? Let’s pencil this panic attack for another day so you aren’t overloaded.” It’s going to happen alongside the sensory overload. My pain isn’t going to feel bad that I’m also depressed. It’s just going to happen alongside the depression. Many disabled people are a sum of conditions and not just singled out textbook definitions you can easily measure. This is something that seems beyond the grasp of the SSA, even after I explained in very plain English in a letter that the issue was a culmination of all my conditions increasing severity and not one condition more than the other. Disabilities are never going to be polite. They’re just going to be present and if you happen to have multiple ones, they will all be present and roll into a condition that becomes a unique form of personal hell.
It’s arguable that the real issue is that the SSA is taking too general of an approach toward evaluating conditions as well. Aside from the specialist you tell them about, they don’t consult actual experts but rather a general practitioner to review the reported conditions. This is the equivalent of having someone other than a forensic pathologist do an autopsy for a murder case. You’ll get results but you won’t get them from the proper point of view and you’ll probably miss something. Regardless, I think there’s definitely room for the SSA to take people more seriously. Ask more questions. Put more weight on the personal accounts from the applicant. Interview people that are actually familiar with the person on a daily basis and not just their physicians who have a cold clinical standpoint built from a 30 minute checkup or psychiatric hour.
Most of all, the SSA needs to understand that people can’t be defined in a textbook. They need to make more efforts to understand not just the book definition of a condition, but also the unique experience that disability creates for the applicant. Everyone has different circumstances and is their own unique case, so while you can pinpoint common afflictions based on the disability reported, you can’t go by simply that to get a real picture of the disabled person or have the room to determine in a letter whether they are disabled or not.
I feel like the most offensive part by far was the audacity in putting in a letter how severe my disabilities are. They actually had the gall to tell me my anxiety and pain were bad but not bad enough that I couldn’t work and this was after I filled in a form describing that I had marked limitations in kneeling and standing for long periods of time and a history of panic attacks bad enough that I missed whole halves of school semesters during high school. It’s one thing to write a denial letter but it’s a whole different level of being disrespectful to assume you know what they’re going through and then subsequently dismiss it. If anything, it was insulting, and it’s definitely a practice that shouldn’t be happening with a government agency of all sources.
This is especially insulting and hazardous for some mental disabilities where the person is already dealing with insecurity,doubt, and internalization. If you tell a person struggling with crippling anxiety,severe depression or any condition that affects the mind that it’s not as bad as they think it is, they may take that to heart and it will do some damage. This cold and presumptuous approach from the SSA could reasonably be causing tangible harm to disabled Americans in addition to denying them the assistance they need. Telling a person with a mental illness something is in their head is basically fueling a fire. Telling this sort of response to anyone disabled creates self-doubt and makes them ashamed to have reached out in the first place. Being professional doesn’t mean we can’t still be compassionate or respectful towards a person and that’s something the SSA needs to take to heart.
Chronic is forever.
One of the things the SSA will really try to convince you of is that your condition isn’t chronic. Now there are very few things I can say with 100% certainty but one of them is that I am going to die depressed,anemic,in pain, and with autism. Not only did I have a chronic condition but it brought enough friends to start a small pool party. It’s hard to say if this situation is the SSA not knowing the meaning of the word chronic or if they just think their applicants are too stupid to understand it. It could reasonably be a little bit of both.
But beyond understanding what classifies as a chronic condition, I think the SSA lacks an intrinsic understanding of the damage long-term chronic illness creates. Many conditions have effects that build over time and create long-term damage. In my case personally I have a permanently weak immune system from the anemia,limited mobility from fibro that lowers my quality of life significantly and a fear of the world around me stemming from dealing with mental illness for so long that never really goes away. Chronic conditions can’t just be evaluated on a surface level. The things those conditions bring with them over time should also be factored in to create a fairer evaluation.
I think the bottom line is that if your door requirement is having a chronic illness and someone brings that and a few plus ones, you need to not dismiss that application so quickly. If one chronic illness is the baseline for what you consider qualifying then multiples should be a concern and a more realistic approach needs to be taken. I’d like to assume the SSA isn’t actually so dumb they think that conditions just happen one at a time but what is probably closer to the truth is that there are only certain conditions they want to support regardless of whether the disability is valid or not. This in itself is a horrible approach because all disabilities should be taken seriously.
A government agency disregarding certain conditions as they see fit sets a precedence for the general public to do the same and allows for those with certain disabilities to fall through the cracks not just for SSDI, but in mental health care in general.In a lot of ways, what our society sees as a valid disability or medical problem is defined by the opinion of the medical community and in the case of disabilities, what is classified as a disability. Part of changing how disabilities are treated in society moving into the future will be the SSA and whether or not they can grow as an organization at the government level and begin to take every disability seriously and truly begin supporting the people who need help the most, as opposed to the applications that fit into their currently boxed-in view of what constitutes disability.
The face of disability can’t be defined.
Disability is an equal opportunity attacker. It doesn’t care what color,age,gender, or affiliation you are. It affects anyone and everyone to some degree. The SSA, however, discriminates heavily. This can be easily seen in the factors they use for determination of a claim. They come off as an agency with little to no actual knowledge of how people work and don’t seem to really care. Fitting into a certain demographic of any kind shouldn’t be used to determine disability because those kinds of things have no impact on who is disabled. No given trait can exclude you from having or not having a disability.
The SSA and really the world needs to stop worrying about surface qualities and realize disability has as many unique faces as it has sufferers. We can’t continue to be in a society where we incorrectly link traits to superficial factors like race,age, gender, or belief. There is no one face or set of traits that define what a disabled person looks, acts,thinks, or sounds like. If we can accept that every person is their own person, than make an effort to understand that any of those unique people could be fighting their own personalized battle with disability despite what they look like,sound like or act like.
A person wearing a suit can have as much trouble working with other people as much as a person in rags. A person with clean teeth and a good attitude is just as likely to have depression as an overtly sad looking person. A woman is just as likely to have chronic pain as a man. No label will exclude you from having a disability and no label will give your struggles less value than another person’s.Until the SSA makes efforts as an organization to see past the surface of people and stops trying to make disability one unified face, the system will continue to fail millions of disabled Americans who can’t fit into the mold of what the SSA thinks disability is.
Redefining Disability and Ending Enablement
One of the huge issues afflicting disability is that even the SSA doesn’t seem to know what a disability is. Despite their own criteria stating the condition must be chronic or expected to last more than 12 months, The types of people getting disability and public assistance are often getting approved for conditions that are not disabilities but rather short-term curable diseases or self-inflicted conditions stemming from unfortunate life choices. For example, alcoholism. Yes, there are alcoholics on disability. I realize that’s a disease and it does need treatment but is it a disability? The answer is no.
Disabilities are conditions you are stuck with no matter what. Disabilities are conditions you will have every morning you wake up and up to the day you die that you did not choose or cause. An alcoholic can choose to put a bottle down but I can’t choose to not be depressed or choose to not be in pain, and even with treatment I will never be cured of my conditions. I think those people validly need help but that help shouldn’t come in the form of enablement while people with actual disabilities are forced to fight and be denied help they desperately need. Don’t give the disabled and disadvantaged the short end of the stick. They need compassion, acceptance and assistance more than ever and they’re dealing with situations they truly can’t control, not something short-term and curable or able to be influenced making a more knowledgeable choice.
Improvement in how disabilities are treated and supported will only change when our society has a huge reality check on what members of society are in most need of love and care, and what that care needs to look like. We alienate and mistreat some of the weakest members of society on a daily basis and that needs to end. Every person deserves respect and love which means the SSA and society in general needs to stop turning a blind eye to the disabled and waiting for them to just vanish. Disability as an issue is not going to vanish. In fact it’s becoming more prevalent every day. The SSA needs to set the precedent and stop misusing funds and mistreating the truly disabled applicants reaching out to them.
People Aren’t Forms
One of the glaringly obvious things I noticed was that the SSA seems to basically have horse blinders on when it comes to what they actually look at. I actually wrote multiple letters to them describing what my everyday was like living with disability but they never read them. I know this because they constantly referenced things from my doctor’s reports and everything else, but never any of my letters. The root of this is that they just don’t care. They didn’t see me as a person. They saw me as a form and my real words had zero value to them. Doctors can tell you a lot about a medical condition but they can tell you next to nothing about the person tied to those medical reports. My doctor sees me at a scheduled and brief time. They are part of a snapshot of my life but only I can show you the whole photo album.
Everything but my own words held weight to them when they made decisions and I think that’s a huge and telling flaw. Understanding a condition is not the same as understanding how that condition affects me as a person and changes my life. My best estimation of the process is that the SSA is looking for the most cookie cutter fit to the government definition of disabled. It’s much like looking for the perfect puzzle piece to fit a hole and trying it one way but deciding after it doesn’t fit that one way, it doesn’t fit at all. The SSA has a blatant lack of compassion,understanding or flexibility. I assume the department is made up of faceless,soulless people who can’t see beyond completing their 9-5. It won’t take dinner off their table if one more disabled person runs into a wall and dies not getting the help they need, because to them that person is just lines on a form.
You may think that’s dramatic but it really isn’t. If I didn’t have my parents or my husband I would be on the streets and dead. I have more than one condition that can kill me if left unchecked and no income or medical care. Many people applying for SSDI are at rock bottom and genuinely can’t maintain gainful work so when they get turned down it really is the beginning of the end. Disabled people who can’t afford medical care are ticking time bombs in a lot of situations so when SSDI falls through, the SSA is very realistically pulling the plug on a life support machine for some of those people.
The unfortunate truth is that until the SSA is able to see the people and not just the paperwork, SSDI will continue failing the majority of disabled Americans. I’m sure I’m not the first person to write letters to them during the application process and I’m just as sure I’m far from the first person to be blatantly ignored for doing so.There needs to be a shift to where the SSA sees people behind those forms and includes knowing that person in the application process because no “psychiatric examination”, medical record or basic form will give you the full picture of what living with a disability is like.
In Conclusion….
Life with a disability is difficult and that is especially true when you are hitting a tough point in life as a disabled person. One of the reasons I wanted to share my thoughts on this is because it’s a point of view we’re often afraid to look at as people. If you work for the SSA or for a government agency, understand there are real people hiding under the layers of the Bureaucratic process. Your callous approach to an application means a lot more to the person receiving the letter in the mail and when it comes to disabilities, the many people who suffer with them can’t be defined by a piece of paper.
If you’ve been denied the same way I have and you have an opinion on the process, take the time to speak up. Whether you write a blog or whether you write a letter to the government, people need to speak up for problems to be acknowledged and change to happen. Lastly, if you’re in the process of applying for SSDI, don’t be discouraged. You have a right to get help and no one can decide how disabled you are or if you are disabled. You know how it changes your life and you need to love and trust yourself enough to fight for the support you need. Be strong, be patient,get a lawyer, and do what you need to do but don’t let the SSA bully and discriminate you if you are truly disabled and need SSDI.
Thanks for reading this issue of Thoughts of an Aspie!
Do you agree or disagree with me? Do you have your own experience with SSDI or living with disability and needing support to share? Please feel free to let me know by leaving a comment or using the contact form on my site here to reach out to me. Also if you like my work and would like to see more of it or support it I’d love it if you’d check out my Patreon page or follow me on Facebook or Twitter via @themeinav! In case anyone is concerned I will postpone the “Weight on Words” issue. This is just kind of the blog that was in my heart this week.
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