Disability Caucus Open Thread 5/26/2016: Disability Services

Chances are that if you've ever had a disability, you've probably had to deal with disability services and all the red-tape, condescension and down right infantilization that often come with them. And if you're born with acquired disabilities, it actually ends up being a hell of a lot worse. You're never truly seen as a grown up in the eyes of the 'normal' folks, and in many cases it's you who has to make concessions for them, not the other way around. This is especially true with regards to employment and adult life in general.

The parents are often told to settle for a lot less when it comes to their kids and their potential. I know because I was told this more than once. You know, the whole 'look lady, your kid isn't really going to amount to much, so just take what you can get.' It wasn't always like that, though. Back when I was a kid there were very few if any teachers who actually specialized in working with non-verbal and other LD children and you really had to go out of your way to find those that did. I was also going through physical therapy as I started pre-k for my heel cord operation so that made things all the more challenging.

I actually went to school in such classes for the first couple of years but my father was never one to accept that anything was going on with me so he tried to make things as 'normal' as possible. And so for the rest of grade school it was like that. With both parents. It probably wasn't until I started college a few years out of high school that I really came into my own. Granted it wasn't perfect, but both the college and Voc Rehab did their best to make sure I had what I needed. And thanks to that I actually finished 2 degrees.

Finding a job is like searching for a needle in a haystack, though, because employers look at us as radioactive. Not always, but usually when they see a guy wearing a brace and raised shoe to stabilize his gait walking in with an employment specialist, that's usually seen as their cue to split. And don't even get me started on interviews. The interviewer will sometimes go out of their way to make guys like me feel stupid.

Then there's things like 'job club', where you go to a place you don't wanna be with other people who don't wanna be there and search for jobs you have no chance of getting on the internet. I could do the same at home without the wasted time getting there and back.

These are just some of my experiences in and out of disability services over the years. How about you guys?

See you around,

Aspie

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elenacarlena's picture

swell. Actually they sound like they need to be taken over by people who have had to experience them, so that they can be fixed.

With multiple chemical sensitivities, there's a tendency for things that didn't used to bother you, to eventually bother you. By the time the chemicals at the hospital were at their worst, I had my own office, so was able to shove sweaters across the bottom of the door to keep the worst of the smells out. I was also working part-time at home. I tried to tell them that they needed to use organic cleaners without scent. The response was "It's not that bad." As soon as I found work enough to work full-time at home, I fled out of there. Haven't worked outside the home since. I can't imagine what the hospitals do with asthmatic patients. The lack of understanding over allergic and hypersensitivity reactions is probably part of what's responsible for medical errors being the third largest cause of death in the U.S.

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Granma's picture

Nice to meet you. I'll be flying to my daughters wedding in a few weeks. I pray and cross all fingers nobody wearing perfumes of any sort will be in my end of the plane. I have a rescue inhaler of course, but flying still scares me because of scented stuff I may not be able to get away from.

How do you manage out in the world doing errands, etc. these days?

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elenacarlena's picture

in that recirculated air. The farthest I have to go to visit family is Kentucky to New York, so I drive.

As far as errands, I have to hold my breath going in and out of stores and restaurants - Kentucky, everyone smokes near the entrances and exits. Inside, I have walked away from people wearing too much perfume, with giant choking noises - I've given up being polite about it, people should know by now that heavy perfumes should only be used in the privacy of one's home. I do complain to management if they stink up the bathrooms - they're usually pretty good about making it less stinky for the next time. (Heavy scents in bathrooms - the real problem, not transgender!!)

How about you?

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Granma's picture

that are especially challenging.

There is a mystery cleaning substance that is very bad. I say mystery because I've never been able get even a clue what it is. But it makes other, less sensitive people sick too. I do pretty well getting in and out of most places these days, more so than in past years. But I take a medication keeps me from reacting so strongly and quickly to the bad stuff.

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The Aspie Corner's picture

have no idea what actually goes on. If I could work inside the home and stick to that I'd do it in a heartbeat, because these days most places really aren't working for from what I can tell.

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Modern education is little more than toeing the line for the capitalist pigs.

Guerrilla Liberalism won't liberate the US or the world from the iron fist of capital.

elenacarlena's picture

hospital, but the fresh air is totally worth it.

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... against you before you even open your mouth at an interview. My wife was a paraplegic, & she described to me some of the reactions she got when she would roll into some hiring managers office.

She found a job working for a federal government office. Back in the day, the government seemed to be more willing to accept people with disabilities if you were otherwise qualified for a position. Don't know how true that is nowadays.

We relocated a couple of times because of my job, & found that vocational rehab agencies were sometimes helpful, but they were often poorly funded & had to do some sort triage among their clients. I expect that they have even less money these days.

Some people just have heavier burdens in life, & it sucks to be one of them ... but best of luck in whatever to you!

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The Aspie Corner's picture

And our governor has found every excuse he can think up to do it every year since the day he took office in 2011. The state actually tried privatizing Voc Rehab nearly a decade ago with disastrous results. I've been with them over 15 years and it seems I'll never get out.

Add to that the fact that you now have to do what's called 'work participation' to keep SNAP benefits and the whole thing is a clusterfuck. This has effected many Voc Rehab clients besides myself. Nothing is worth that kind of stress and the people who oversee this work participation crap are absolutely no help.

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Modern education is little more than toeing the line for the capitalist pigs.

Guerrilla Liberalism won't liberate the US or the world from the iron fist of capital.

Lenzabi's picture

All the hoops I have been put through in my 52yrs. Special Education schools, counseling, socialization therapy that got confusing as the rules kept getting changed (They wanted me to be more "warm and huggy" yet then said that was too much and too space invading, so stop, then back and forth). It impacted my ability to trust people.

Asperger Syndrome at the level it affects me does not interfere with my intellect, as I did manage to finish college once I decided to get that out of the way. I can also keep up with switched topics, and have been one myself to switch subjects so fast people asked me to slow down.

I am pretty sure the OP also has gone through something like this. Physical disability, that impacted me differently, unable to stand long periods of time anymore, or walk stably, then the major conditions that disability would still deny me on, and the struggles to get the help you need and deserve makes one feel like a circus animal jumping through hoops to amuse some one. diagnosed with a laundry list mattered little, it was not till they found my little clot buddy in my left arm that they finally gave me disability. (Yes, a life threatening condition seems to be what will shake the out of their denials. Of course, most folks are thinking, a nice large lump settlement along with monthly paychecks is what one gets, but in reality they only gave a lump dated from the discovery of the clot, so no, no fatty settlement as many would think.

Had I been a government weapon contractor like oh, say Lockheed-Martin, I may have gotten a fatty contract settlement, but no, just some regular shmoe with some issues of little consequence to them, so they did like OP said and basically said, "This is all we're gonna do for you, take it or leave it" and as I am unhire-able after years of diligent work, I settled for the small lump and the monthly and scrape by on the Kingly sum of 13k a yr. Fox News would explode at such a thing!

But yes, you get scrutinized, condescended to, treated less than human when applyi8ng to get help for disability as America is a society that drills "Everyone loves a winner" into the collective consciousness, and sadly disability people are profoundly against the grain of that mental zeitgeist of our culture.

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So long, and thanks for all the fish

elenacarlena's picture

Republican revolution - put people who think government doesn't work for people in charge, so that government doesn't work for people? It certainly seems possible that these programs could work, were the workers compassionate and knowledgeable.

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riverlover's picture

I was unemployed. Getting unemployment checks (bank transfers). That in itself was chastening, hard to keep track of the incoming, debit card to get it out. I was internet banking but it still got opaque.

At that time, I was unemployed from Cornell, and essentially blackballed there, since HR had "the goods" on me. I was also a trailing spouse, so it was not like I could just move away. But I had to prove job searches, weekly quota. How do you prove that you sent out resumes and calls and got no responses? It got so bad that before my UI ended, I had just given up filing for benefits.

And I was not apparently disabled then, did not claim to be, just dealing with husband's terminal illness. It is not at all wonderful to be treated like a balky 3 y/o who needs guidance. I can't imagine having to deal with that for years at various "help" steps.

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Hey! my dear friends or soon-to-be's, JtC could use the donations to keep this site functioning for those of us who can still see the life preserver or flotsam in the water.

lotlizard's picture

Both have graduate degrees but have never been able to find employment appropriate to their qualifications.

http://work.chron.com/high-rate-unemployment-blind-14312.html

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NCTim's picture

Over the course of the last couple of years, ALS has taken my Sweetie;s ability to walk, talk, feed herself or care for herself. Sweetie has her MSW and was a school social worker, It it confounding how many people talk to her like she is stupid.

Sweetie has a dedicated communications device. She uses a text to voice application, in tandem with a head mouse and dwell to click. The device is basically a tablet computer with software. It is painfully obvious that the people who created the device have not done their due diligence. The device lets the user go vaulting off into unintended places, often changing the configuration.

The device was $9860, For a tablet computer, software and wheelchair mount. You don't suppose they are exploiting the health insurance paradigm, do you?

BTW, I was dumped by my employer, because I wasn't 100%. I would have had to quit, eventually (certainly by now), but did not appreciate the way things went down. Sweetie used her sick and vacation time, then went on disability.

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The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -

The combination of an android tablet & free software works. Don't know how it compares with with your multi-thousand dollar setup, but it works ok.

We used a Kindle Fire HDX + Speech Assistant AAC software downloaded from Amazon's app store. You can get a new tablet for around $250 or less & the app is free. The biggest limitation in our experience was the result of using the tablet's touch screen as the input device ... the user needs a certain amount hand motor control to hit the buttons for the programmed words & phrases, & even finer control to use the on-screen keyboard to say whatever snarky thing he or she wants. Never had any software problems, though.

As with any such adaptive equipment, YMMV ... mostly depending on what the user needs & can manage. In any case, you'd end up with a perfectly satisfactory e-book reader. The Kindle Fire is also ok for casual web browsing, some games, etc ... much like any other mid-range tablet.

Hope this helps somebody.

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NCTim's picture

on the iPhone and iPad, until her hand dexterity diminished to the point of not being able to use a touch screen. The dedicated device utilizes a head mouse. I looked into the technology, so she could use it on the home computer, the head mouse and mouse driver is $400 or more. The dedicated device has a touch screen and extended batter life, but beyond that it is just a Windows machine.

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The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -