I'm Tired of Having to Justify My Disability

Miscellaneous and Personal Stuff I Must Share
41

Not really. There’s a family of disabilities which is pretty much normalized; its sufferers often wear prosthesis (a lot of the time, visible ones) and may on occasion ask someone to read something for them because “I left my glasses at home!” In fact, items very similar to those prosthesis are used by other people for safety, comfort or even fashion!

Part of the work that needs to be done regarding social treatment of disabilities is learning to treat any other disability the same way we treat lenses-correctable eyesight. Or better, because I don’t expect anybody to pay for my eyeglasses but if the only way I could move around was on 4K prosthesis or 5K chairs I’d really, really love to get some help with that (numbers from a recent article about paralympic athletes; the costs are for their daily equipment, not for the sport models).

42

Yep, he could have. He could have just said “yep, I make my own soap.” It was entirely his own volition to go further

I’ve had customers who have stated “I don’t want small talk” when I’m ringing them up. In which case I nod and say nothing other than “Here is your change, have a nice day” at the end of it all.

The reason so many make small talk is that 1) my employer expects me to engage you in conversation and if I’m being evaluated NOT talking will count against me unless YOU specifically request “no small talk” and 2) MOST people will be offended if I don’t “make small talk”, in some case will even complain to management if I DON’T engage in it.

Therefore, the default is small talk.

If you don’t want small talk you have to tell me that because, not foreseeing a need for the ESP course, I am not a mind reader.

43

Unless, of course, someone higher up the chain has decreed that the case-reviewers should get as many people off disability as possible.

I have never worked for the VA and don’t know how things work over there, but I HAVE worked in long term disability administration in the private sector and there is an incentive there for companies to boot people off the benefits, even when they have genuine problems, even when they have been compliant with all treatment and requirements.

44

When I worked fast food a family came in one day with a child who.was in a wheelchair and had difficulties speaking. The kid was the only one ordering so I paid attention to the kid and after a bit of frowning on my part and requests to repeat the order I got it right. One of the adults came up to me later and thanked me for focussing on the kid and not turning to an adult and asking.

That made me re-evaluate how I dealt with disabled people before ( not the best) and made me much more aware of how I deal now. Although I still want to scream “out your damned hearing aids in!” to an elderly regular who we all know has hearing aids but refuses to wear them for whatever reason .

45

Not familiar w/ the concept of “scare quotes.” My sole intent was to indicate that one person’s definition of what constitutes a disability or being disabled may differ from someone else’s. The VA’s definition of what constitutes being disabled is greatly different than SSA’s, and neither is the same as the ADA’s.

In my considerable experience, many people use the term disability to refer to something I would call an impairment or condition. It limits them or affects their ability in some way, and might make some things difficult, but it really does not PREVENT them from performing the majority of basic life/work tasks.

Take any physical or mental condition. Say your foot was amputated and you have a prostheses. You experience some moderate pain, and are limited in your ability to run, but can walk with a cane. That’s a HUGE deal which I would not wish on anyone. Are you disabled? Why could you not drive a desk?

If I encountered such a person, I’d be eager to not make their life any harder than it is. I’d hold the door for them, offer my seat on a bus. And when doing so, I’d hope I did not offend someone who did not want such attention. But if someone moves very slowly with an ambulatory aide, I’d appreciate it if they did not rush to be the first person out of their seat when exiting the theater, and walk down the middle of the aisle making everyone else wait behind them.

People differ in their personal response to such developments. Do you use your loss of your foot to try to obtain sympathy, monetary benefits, and other “accommodations”, or do you do your best to be as independent and productive as you can be given your new condition? (I imagine most people would fall somewhere in between.)

Also, many (most?) medical conditions are subject to change over time. Possibly they get better with treatment. Maybe they get worse, triggering different treatment/benefits. Unfortunately, benefits recipients are not 100% reliable in reporting changes in their conditions. Do you think it is uncommon for SSA disability benefits recipients to return to work, not inform SSA, and keep collecting benefits? I assure you, it is NOT at all uncommon.

So the OP resents having his/her case periodically reviewed. As a taxpayer, I am not sympathetic to him/her. There is far too much money involved, and far too many - um - confused/ignorant/dishonest… claimants to simply pay benefits to everyone who personally believes that they are/remain “disabled” - however they personally define that term.

My personal impression is that the VA has done exactly the opposite, aggressively paying down the claims backlog. Many people may not realize that a 100% service connected VA disability rating does not mean the individual is incapable of working. In fact, in most cases, an individual CAN work while receiving such bens. They can also apply for SSA disability benefits, with no set-off between the 2. (With minor exceptions, you cannot work while receiving SSA disability benefits.)

But, as I said above, I’m sure my impressions/opinions/experience regarding VA disability benefits would differ from the OP’s and many others’.

46

Yes, I used to share office space with the Return to Work nurse at a previous job. I overheard some very discouraging conversations. Sure, there were certainly cases of employees who were trying to “game the system” by staying on LTD when there was no medical verification that they needed to be (and our employees could go to their own provider; they didn’t have to use the one contracted by the LTD insurer), but I had a conversation with the nurse one day and she estimated that only about 20% of employees out on disability fell into this category. A typical case of 80% of the problems being caused by 20% of the people.

As someone who used to be a case manager for individuals with disabilities, I can tell you this is much appreciated. I’ve been the person who calls the manager later that day or the next day to pass along similar praise for an employee who addressed the individual instead of me. It’s the kindest and most respectful way to be, and it helps people practice their communication skills.

As above, I used to be a case manager for individuals with disabilities, mostly cerebral palsy. I’ve had plenty of people come up and just start asking me questions, including some really targeted, rude ones (i.e., the woman who came up while I was at the mall Christmas shopping with a client and started asking me if my client was in a group home, how could my client possibly live independently, etc.).

My favorite, though, was a day I was out with a man who is blind and uses a cane. A woman came up to us and asked me, “IS HE BLIND??!!” My response was, “Well, he’s not deaf, so you can ask him yourself.” She called me a wiseass.

47

After his accident, Christopher Reeve had to tell the (so called) professionals taking care of him “Look, I’m a grown man. If you can’t treat me like one, you can leave.”

I read his book Still Me about a year before my accident, and I must of used that line about a thousand times.

When I have a disabled person on my checkout line, I treat them like a regular customer, which they are.

48

Yeah - LTD is another one. It is common for LTD to be based on an inability to perform one’s past job. But that does not necessarily mean an individual cannot perform ANY job. Of course, if the LTD recipient goes out and GETS a less demanding job, their earnings will be set off against their bens - or possibly disqualify them from continued LTD. How relevant is it that the LTD recipient doesn’t WANT to do work different from their past work, or that other work will not pay as well?

Say you are a 40 yr old union construction worker. You injure your back, and can no longer work construction. But you are physically and mentally capable of working as a retail cashier making minimum wage. Are you “disabled”? Different individuals and different entities would answer that question differently. Also, different individuals and different entities would likely differ as to what they think the answer SHOULD be.

49

Let me write a short play for you, with characters of “I” and “Other guy” playing the parts, to convey some of the more problematic elements, as I see them, of your series of replies for a topic you care so little about that you feel compelled to make multiple posts in:

I say, “I’m tired of having to do this thing that causes me pain.”

Other guy says, “Well, you have to do the thing.”

I say, “It still pisses me off.”

Other guy says, “Well, if that’s the cost of you having to do the thing, boo-freaking-hoo!”

I’m not a fucking child. Whether or not there is a “good reason” for continually verifying through a third party what is already knowable through the government’s own records is really “worth it” or “necessary” or even saves money given the cost of having to pay someone to make that second evaluation, perhaps you could agree “Other guy’s” response indicates a certain tone deafness. It doesn’t really speak to the source of the frustration, and with choice remarks like “boo-freaking-who!” perhaps it goes a bit overboard in the, well… I’ll leave it there for now.

50

Fine. You choose to post in a public forum. You don’t appreciate that I perceive your post as ignorant and/or whining. Welcome to the internet.

I also perceive our current “disability” systems - the programs themselves, not solely the misuse and abuse of them - as HUGELY problematic, yet insufficiently discussed. So post provided me the opportunity to express some of those views. You invited people to share their similar frustrations. Sorry my response is not what you desired. Again, welcome to the internet.

Hey, let me give you a scenario. I KNOW I’m a good driver. Some years ago, I passed some tests, and was given a license. Haven’t gotten any tickets or in any accidents for some time. You know what is outrageous? Every once in a while I have to go back and get my license renewed! Sometimes, I even have to take a test, to justify that I still am capable of driving adequately! The horrors! And the administrative waste! :rolleyes:

51

And yet I feel comfortable to continue posting. As do you. Which, to be clear, I’m fine with. I’m not the one who said you shouldn’t give “a rat’s ass” if I’m “disabled.” That was you. By all means, keep on posting, and let us each take comfort in our own personal evaluation of who is likely to come off as the more “ignorant.”

52

Wow. Time to chill maybe. I think we all get your point but complaining about bureaucracy is a national pastime.

53

Dinsdale, STFU. Please.

OP, I understand the system has to periodically review claims, but I also have sympathy for you. Probably because I possess the ability to imagine how it must feel to be dependent on a safety net that could be snatched away at any time for bullshit reasons.

I hope your review goes smoothly.

Sent from my moto x4 using Tapatalk

54

It did, thank you. It was yesterday. On the bright side, one of the ongoing frustrations that I’ve been dealing with, for many months, was also settled (or at least should be).

See, I actually have to navigate two government bureaucracies, both at the federal level (not the Social Security Administration: VA and DOD). For the last year and a half, one has been saying I’ve got one condition, the other has been saying I’ve got a different condition that I personally don’t believe I have. The disagreement is based off, you guessed it, a single one-hour session with a VA representative who, after I guess only reading the top page of a massive stack of papers documenting what was then over a year of history, decided to go a different route than what the DOD had already diagnosed and documented in my medical records.

Now, the two diagnoses are “close enough for government work,” the disability ratings are the same between the two departments, and the benefits are the same, but this whole time I’ve been really concerned that, since I’ve transitioned to having my care managed by the DOD to having it managed by the VA, at some point the DOD is going to pull some bureaucratic nonsense and say “Oh, well, I see you’re no longer being treated for X, so I guess you’re no longer disabled.” To which I fear my protestations of “but I am still disabled, it’s just that the VA is calling it Y instead of X: the treatment is the same.” To which, knowing bureaucracies, I fear I’ll get the “Boo-freaking-hoo!” response (hat-tip Dinsdale).

Oh, and as an added bonus, since it’s a dual bureaucracy, I will still, at some as yet undetermined point, have to do a re-evaluation with the DOD, on top of the one I just did with the VA, and since they don’t seem to be following their own time table (my DOD re-evaluation should have been last month), I am too damn terrified to even leave my apartment for more than a couple days because god forbid I finally get a letter in the mail tomorrow telling me I’m to report for re-evaluation next week, but I don’t get it for a week and a day, because, oops! I decided to go on vacation. While I’m sure there’s a super-efficient and fair appeals process if that’s the case, in the meantime, as that appeal is pending, I suspect they’ll just cut, cut, cut and come back with another “Boo-freaking-hoo!” (again, hat-tip Dinsdale).

55

I’ve come across a more than a few people who believed that unless i was actively “fighting” against my spinal cord injury, every day, all day, then i had somehow “given up” on my life. This is so fucking grating and bass-ackwards. The idea that a life can be well-lived without standing on two feet is just utterly impossible for some to fathom.

And this impossible to fathom reality is done no favors by the mass media. Anytime a spinal cord injury is featured in a movie or show, etc., 9 times out of 10, it shows some person “not giving up” and “defying their doctors” and getting up and walking again! This just perpetuates the false notion that willpower can somehow “beat” a spinal cord injury. It can’t. There currently is nothing that can beat one. The true grace lies in finding your place in life irrespective of physical constraints.

56

This fondly reminds of my first Halloween post-injury, 19 years ago. I was just a few months out of the hospital and already being overwhelmed by the way i was treated as if i was a drooling imbecile with the agency and brainpower of a mentally deficient 5 year old.

But my dark and sarcastic sense of humor was still alive and kicking and my idea for what i wanted to be for Halloween that year reflected the ways in which i felt i had been treated. I was going to be “Wheelchair Superman” (aka Retarded Superman). I was going to dress as the superhero, while being pushed by a “nurse” (a friends costume) and when i came to the door, I’d yell inappropriately loudly, “Twick ohh Tweeet!” And I’d get giant helpings of candy from people with giant smiles on their faces saying things like “oh well arent you an inspiration!”

Sadly, after attempting my lines a few times in practice, i realized i could not play the mentally deficient Superman with a straight face. I busted out laughing every time i tried the “Twick ohh tweeet!”

57

Where do you live that you have to retest for your driver’s license?

In Texas, I haven’t had to get re-tested yet, and it’s been 42 years since I took the written test, and 41 years since I took the driving test.

I have to go in every few years, because my looks change (so they need to get a new picture), and my eyesight changes.

And yes, eventually, some people’s ability to drive well erodes over time.

But do you want to walk into the DMV and have someone say that you can’t drive because you drove around the parking lot with them, and they don’t like the way you breathe? Or would you want to deny you a driver’s license based on your eyesight, when your optometrist says your eyesight is good?

Would you like it if you were randomly pulled over and had a police officer give you a vision test?

How would you feel if a sixteen year old gave you your driving test?

I think these are closer to what ASL v2.0 and other people with disabilities who are constantly battling bureaucracies just to survive have to deal with.

58

Welcome to my personal little slice of “heaven” any time I am in my wheelchair, whomever is with me gets spoken with over my head/past my face … as if I were a 200 pound sack of cement being pushed around in a chair …

59

I had a disabled employer for a bit who once replied to a patronising ‘Awww, I’m sure you’ll walk again soon!’ with ‘I hope not, this chair’s brand new, and it was bloody expensive. I want my money’s worth’. Their expression was priceless.
I think a lot of those people are basically just scared. The idea that someone could have a lifelong condition, especially one that could just happen suddenly) and there’s nothing they can do about it is terrifying. Hence the fucking annoying idea that anyone with a lifelong condition could ‘cure’ it, but isn’t trying hard enough. That way, people can reassure themselves that if it happened to them, they’d be able to fix it.

60

A couple days ago I had an elderly couple come through my check out line. They’re a couple of my “regulars” and like to chat. The wife is on supplemental oxygen and, as we were having a LOT of power outages in the area due to a storm I said I hoped she had power. She said, oh, we have a back up generator and then we’re off discussing that, I asked if she did her own maintenance or had a service… and then her husband, who happens to be respirator-dependent, rolls up in his wheelchair and says he’ll start loading the cart. So I start handing him the bags of groceries (I already knew to pack them lightweight for these two) and he’s loading the cart. Occasionally I have to lean closer to hear him because there’s a lot of background noise in the store in the afternoons, his voice is soft, and to be honest my hearing isn’t what it used to be. Which is fairly typical of these folks, but honestly, some folks wig out seeing a guy in a wheelchair hooked to a ventilator loading a shopping cart - even more so when he and his wife pile a few bags of groceries onto the footrest of his wheelchair and he can still proudly carry his wife’s groceries out to the car for her but this week they had a little bit too much for that trick.

Which is sort of how things SHOULD be, but all too often aren’t.

The problem isn’t always the disabled person - it’s not unusual for other people around them to be the obstacle. The attitude that oh, the guy in the wheelchair shouldn’t be carrying the groceries. If he wants to and can do it then let him! First time someone in a chair or using a walker or crutches or other mobility aid comes through my line I’ll ask if they need help getting their stuff to their car. Yes? I’ll call someone. No? OK, go for it. And if someone who appears healthy says they need help I don’t question it, I get them some help, because I can’t diagnose a bad back or shoulder injury or whatever by eyeball.

Yeah.

There’s a lot of fear.

I’ve worked for deaf people and blind people. I married a guy with spinal damage. I don’t want to be disabled, but I’ve absorbed the notion that it doesn’t have to be the end of the world and in fact you can have a very good life even with extra obstacles and annoyances. Would a cure for X, Y or Z be great? Sure! But I don’t see any gain from putting one’s entire life on hold waiting for it. I think I would just HAVE to do something in the meanwhile other than just waiting.