Am I Disabled?
aeon.co
aeon.co
For several years, my onset with in 2012 at age 36, I considered it more of a bummer and inconvenience and never thought about it any other way.
Personally I was fortunate that I was only having partial complex seizures which meant that I'd basically space out and stare into the distance completely unattached from my environment for 30 seconds to a few minutes according to my ex-girlfriend and other people I interacted with regularly.
Rarely did I have any indication that I'd had a seizure aside from the occasional, unexpected incontinence. One instance that sticks out was walking back from lunch with co-workers when one walked up to me and said "did you lose something". I dropped my sandwich while I was having a seizure and was walking all the while.
What allowed me to say "yeah... this is a legit disability" was examining how much had changed in my life without the ability to drive. Luckily I'd just basically moved in with said girlfriend who lived 10 minutes by bus from my job downtown, this was well before I worked from home and there's little chance I could have gotten to work from my rural home an hour away with essentially no transit.
I was really living a normal day to day life, I just had to make some adaptations to how I got around and had to stop using power tools without dead man switches.
Slightly hyperbolic maybe, but I can make a good case for how epilepsy cost me that house, relationship and severely impinged upon my job search.
Hindsight... it's a hell of thing. I don't know that I'd have felt any different being labeled or self-identifying as disabled but it goes a long way to describing the impact it had on my 30s. I'm also a guy that occasionally drove 50k miles in a year to travel for shows and work and various other road trips.
Working at a FAANG in silicon valley really highlights that. My commute is 4 hours a day because I have to take public transit, and working late hours is a bigger burden than unaffected people in similar life situations.
I'm completely dependent on others to take me places, even for groceries.
I dearly miss living in Vancouver where I could just walk anywhere easily and my disability wasn't a daily consideration.
But even growing up, it's a difficult disability to rationalize to myself and to others in my life.
If people want to go out for drinks, I have to explain why I don't drink since it makes me more likely to have a seizure. When friends go to clubs, I can't go (not that I enjoy it ) and just walking down the street is a crap shoot in case an ambulance or police car go by.
I've actually learned to embrace it more as part of my identity and just be up front with people so they know it up front.
It's been particularly difficult in my previous career working in entertainment, where so many newer shows and games have adopted strobing as a stylistic choice. Especially with the rise of better LED lighting. So instead I try and raise awareness with my fellow professionals so they can make better decisions to accommodate people like me when making decisions.
Which has been great. I've recovered so much of my time back. I can sleep longer etc... And my health is better.
The reason for the four hour commute (total.. Not each way), is that my wife works in the Bay as well but in the opposite direction. So we split the distance. Her commute is two hours (hour each way) since she can drive. But it's better to be closer to her place of work since if there's anything that requires us getting back home, she can respond faster (20-30 minutes in non rush hour).
Sometimes you're lucky and the bus and train schedules align, but in my experience, the bus schedule will come out, aligning to caltrain, then three weeks later, caltrain adjusts their schedule, and you've got 20 minutes between drop off and pickup again. It's better if you get a corporate shuttle to pick you up from caltrain, but still. Also, if you need to stay later than normal, bus and train service drops in frequency a lot, so you might be waiting even longer.
I was just avoiding traffic, so I drove to caltrain, which avoided the waiting on one end.
(I say this as i, in all honesty, will be sleeping on a couch at work this christmas. Im in the military. There are some few jobs that require literally sleeping in your office and i was just volunteered/volentold to cover one of them over the holidays.)
I also did a shift in whether I considered it a disability or not. In the beginning, it felt like just a tiny part of who I was. But as time went on, the seizures increasing in frequency, and the anxiety related to the seizures going up as well, it started to make a larger and larger impact on my life and, maybe more importantly, my self-image.
I think it is interesting how the same thing can seem so different at different points in time.
In aviation, anything related to loss of consciousness (LoC) is automatically disqualifying. You can get a special issuance for most other health problems (cancer, high blood pressure, sometimes diabetes) but they have to be under control. DUIs are also taken very seriously now.
One of the most alarming stories was when a Florida regional jet pilot who drank too much Mountain Dew (caffeine) and had a heart race event, causing him to cancel a flight. FAA medical raked him over the coals with batteries of tests. Don't know if he got his medical back. So don't Red Bull and fly!
Note that FAA medical waivers for corona may not apply to insurance requirements:
https://www.aopa.org/news-and-media/all-news/2020/march/31/f...
Caffeine is a hell of a drug!
https://pubmed.ncbi.nlm.nih.gov/29414557/
Good to know. It wasn't reported that the Florida pilot had a seizure, but he too was too jacked up to concentrate on flying. Had it been a seizure, it would be tough get an aviation medical renewed because it can't be proved that LoC won't happen again.
Fatigue Countermeasures in Aviation (Mountain Dew Highest Caffeine Content)
https://www.asma.org/asma/media/asma/pdf-policy/2009/fatigue...
So it was the loud music and bright strobe light that triggered the seizure. The caffeine and the lack of sleep lowered my brains resistance to seizing.
In reality, recruiters tell candidates to lie about the meds ("everybody does it") and to stay off them long enough to pass the urine test.
2) Because military recruiters are under tremendous pressure to get enlistments. They can be court-martialled if they miss quota.
Note that if you wash out in the Navy, there's a lot of crappy jobs you can be assigned to.
For myself, I'm bipolar. I've had significant difficult my entire life but I didn't know why until recently. Being bipolar has a severe impact on every aspect of my life.
In relation to work, it's just painful. I need accommodations to handle a 40-hour work week. I need a regular schedule. I can't be on-call during the night because I take medication to sleep; I can't even walk properly during that time. I have days where it's better to one day off than spend a entire week being unproductive.
Despite all of this, I've managed to be as productive as my non-disabled coworkers because I am good at what I do. I know how to cope with my symptoms but I can't cope with having to do it the same way everyone else does.
And it seems like no one else can cope with me either. Not being able to be in the on-call rotation causes resentment. Being randomly sick is disruptive. So many people think I'm off having fun while I'm actual at home trying not to kill myself. (I deal with suicidal thoughts quite frequently, never attempted.)
This is all made worse by being unable to explain to my coworkers and managers why I need these accommodations. My dad thinks I'm demon-possessed. I'm not exactly keen on finding out that one of my coworkers has the same belief. My friends know, because I can afford to lose friends. I can't afford to lose a job.
It's a damned if you do, damned if you don't situation.
Needing accommodation was a major factor in losing my last job. I was transferred to a department where I couldn't be promoted due to my limitations and then let go at the earliest opportunity.
Edit:
Forgot to mention I also have a milk allergy, can't have caffeine, and can't drink alcohol. This severely limits my ability to go out with coworkers.
Sit-down restaurants that advertise handling allergies don't. I've gotten extremely sick from every one I've tried to eat at despite being extremely clear that I'm sensitive to cross-contamination.
Fast food is hit or miss. I can't even trust Starbucks to use coconut milk instead of regular milk when I ask for it.
I had a coworker that might have been bipolar as well but didn’t really explicit it, and we felt we shouldn’t dig. In a week to week basis work was done. We were a team of 7 so someone being on or off at a given time had little impact, hell any member could be warped into another project for 3 days and come back later, nobody was dying, nobody really cared, we just re-shuffled tasks and go on with our life.
But she had points ducked from her evaluations every quarter for not having a regular schedule, and submitting sick days without notice. Nothing else in our job was predictable (and we had no on call shift), but it was sacro-saint to have a regular presence, and my bosses looked personally attacked someone could not respect the set rythm.
They were all smart people, but it was maddening.
Sorry for the rant, but It still pisses me off years later.
Who the hell knows when they're going to be sick? I've never heard of such a thing.
Then you'll have a whole working day, where you are functioning at like 50% capacity, and at least you can pass on your work which might block others to a colleague.
In my experience most of the time this is the case.
Reporting in sick in the morning all the time can be quite distruptive in some jobs.
If I were in this situation I would look for a job where there is more flexibility in this regard. Or keep an up-to-date document where I list all the ongoing tasks and their statuses and next steps (this would probably add a lot of overhead though)
This is similar to planning an activity with a friend, and them not showing up. If they do this to you multiple times; you waiting for them and they do not even answering their phones, will you plan your next thing with the original enthusiasm? Or will you think "oh god they wont even show up, whats the point of planning anything".
This has nothing to do with disease or disability, this is just a simple break of promises multiple times in a row.
This can be avoided though, simply make promises which can be kept; do work, which can tolerate unforeseen absences, or work in a different way than others which compensate the issue in some way that is fair for and agreed upon by the other teammates.
I have my own fair share of health issues, and managed to choose a workplace which accomodates my needs.
Some people are not that lucky to have the opportunity or even ability to do that, but this is not in the scope of responsibility of an average citizen to solve.
Lots of stuff work that way, and we have a limited capacity, and tolerance to try which is useful, and which is just an "everybody does it like that" fad.
I don’t come out and say that I’m bipolar, but I do make it known that I have chronic mental health stuff that I need space to deal with sometimes. I also have hypomanic periods where I’m incredibly productive, and I think that helps smooth over relations with co-workers and bosses because when I’m good, I’m really good. When I’m bad I need space to sort it out and clear expectations of what I need to get done from a work standpoint.
Consulting works well because you kind of manage your own time, work is delivered in teams (at least in my world,) and if you can manage your client relationships well it smooths over a lot of bumps. If you work for a good company that gives you space to be a flawed human, you can make it work.
The pandemic has actually helped quite a lot; I no longer have pressure to go hang out with a bunch of people drinking when all I want to do is sleep. As long as I show up to meetings and communicate about what I can and can’t do it works out for me.
If I knew in college what I know now, I would have 100% had all the paperwork to be considered "disabled" by the government. I tried to do the right thing and emulate a successful adult life, but it's been a pretty miserable experience so far.
At this point, after so many years in tech, there's no way I could convince the government that they should cover my health care and pay me a stipend because I'm so disabled that I can't work.
There's not much else to do at this point besides push through to retirement, one day at a time.
Think I've burnt out though. Not just of programming.
It's kind of comforting to see BP on HN more so these days. Usually it feels lonely because people diagnosed I know aren't programmers.
For me, I think it has gotten worse with age and presents new struggles.
In regards to the article. I don't respond, or I mark no. It never seems worth it to announce it.
This mentality totally screwed me over during university, and I feel like a lot of my mental stability right now comes from how my job place has guilt-free discussions about what we can finish in the remainder of the time until the deadline, without "oh we'll just work harder".
Maybe I'm just mixing up stuff I don't know.
If I remember correctly the reasoning behind it was quite ugly; he couldn't stand people who drank those alt milks, because he thought them as rich people pretending to be intolerant, and it was some kind of pity revenge.
But unfortunately (?) most of the time this applies: Never attribute to malice what can be explained by incompetence.
Probably shouldn't've watched so many Gordon Ramsay videos about what could go wrong in the kitchen in mismanaged restaurants..
The mind is the last frontier of health and medical professionals frequently mis-diagnose. Don't accept your "bipolar" label until you understand yourself how your mind works.
See https://www.newscientist.com/article/2083706-my-minds-eye-is....
That said, I’m available if someone wants a senior rails dev. :)
While there is some sense of continuum, there is a difference between being hurt and being injured. In a similar sense I feel there is a continuum of "something" and disabled. I don't really know what to call the "something" end of the disability continuum that would be analogous to "hurt" rather then "injured". For me I'll call it "inconvenienced" but I choose that word for me not to insinuate or inflame others.
Serving in Afghanistan, I was "hurt" on many occasions and "injured" once. That injury left a very visible scar on my face, migraine like headaches and some hearing loss.
Am I disabled? I would say no. I can do everything I have always been able to do. The scar is a conversation starter and the rest is manageable. I view it that I am "inconvenienced" rather than "disabled".
I would say, in general, if you are not sure if you feel you are disabled (even if you have been diagnosed) then I would say you are not.
Again, that is just my view and I don't offer it to be combative or diminish someone else's plight.
She spends half her week pleading with medical staff or arguing with insurance about why the drugs and procedures shouldn't be denied. Her eyesight is rapidly degenerating. She's has diverticulosis (they told her to lose weight and stop eating meat... she's thin and vegan). A number of her bones have started to fuse and she has acute arthritis in places that seem to show up without warning and were nowhere to be seen on images from less than a year ago. She's im chronic, sometimes debilitating pain. There's no diagnosis and people keep jabbing her with needles based in what appear to be best guesses. She's disabled. She doesn't want a sticker because it's embarrassing and she's worried about people thinking she's abusing the system and vernally (or worse) assaulting her. She'd rather walk the extra distance I'm horrible pain than have to deal with it.
Being "disabled" means lots of things and wears many faces. The stigma sucks.
But I can walk, and I look young, so I had a hell of a time getting diagnosed. And I felt really guilty about using a disabled parking pass even though I knew I needed it.
Edit: something in the RA realm is what they suspect but it's hard to be conclusive because she has symptoms but no markers.
The real difference is that OP could could determine if his current state is a regression from normal.
Your mother's abilities degraded before she could understand what she misses out on.
So being disabled is the norm for her, she does not feel disabled, but when filling out official forms, she has to compare her abilities with her perception of "normal".
So it's not that OP is wrong, he is just in a different situation, they are both right.
So far I’ve always answered “no” because I feel like this is one of those things that shouldn’t hurt my chances, but in practice will. Either on purpose (manager passing me for someone “normal” and making up some other excuse if questioned) or cause of subtle bias (manager seeing yes and jumping to conclusions subconsciously).
$Employer gives you a form to fill out with your disabilities and their Employer ID#. You fill out the form (if you get hired) and send it to $GovernmentAgency yourself. $Employer lets $GovernmentAgency know that they hired you. $GovernmentAgency gives a quarterly statement to $Employer without any specific information tied to individuals.
Same thing with race, sex, age, and all the other affirmative action qualifiers. These are really things that employers should not know or care about in the hiring process.
As it is, don't feel bad about lying on the forms with stuff like this. The system is rigged against you, don't give them any more ground if you don't have to.
If a condition affects your ability to do something, then it is a disability.
As someone with ADHD and ASD, my ability to do certain things is substantially impacted by my condition. I am fortunate enough that I am able to adapt my environment to my condition, reducing the impact, and do not feel the need to seek concessions elsewhere. As such, I do not identify myself as a disabled person, but I do have a disability.
Others (even with the same condition) are not quite so lucky. Their disability has substantial impact on their day to day lives, and they need external assistance - they are "disabled".
While I wouldn't use a disabled parking spot, there are some exceptions from social norms that I allow myself:
- segregating trash (keeping an apartament clean and organised is crazy difficult by itself, and I still learn to put things into trash after using, at the age of 36)
- getting a sitting space in a crowded bus, even if there are old people around
As for the disabled parking spots, when I was ~25y.o., I had a knee issue for half a year. I didn't limp much, but every single step was painful and difficult. It was just half a year, and I didn't bother to get a disabled license plate, but still fully deserved to use the spots.
Since that time I always have doubt whether to point out to someone that they took a disabled parking spot. The way I handle it now is by asking someone who leaves a car, who doesn't look disabled, if they need some help (instead of pointing out that they are assholes). If they are indeed disabled, they won't mind, if they aren't - they feel like assholes :)
You should just stop bothering because it’s really not your place or any of your business.
I say this as someone who took care of my mother during cancer treatments. I drove her to her clinics/hospitals and she had a difficult time walking from the parking lot to the door, so we were able to get a handicap parking thing issued to hang on the rear view mirror. It helped her tremendously that I could park the car basically right at the door and we could both go in together. I never abused the label and removed it when I wasn’t driving her around, but every time she was in the car with me and we went somewhere I hung it up. There were times when she/I forgot something in the car and I had to go out to go get it. There were times when people like you would have seen me lightly jogging to the car to get something and running back in. You would have asked me if I needed help and apparently I “should feel like an asshole.” You would have asked me if I needed help and if I didn’t ignore you you would have wasted my time trying to bring in papers or my mom’s purse or something. And if I did ignore you because I was in a hurry you might have tweeted about me taking up a handicap parking, when you know absolutely nothing about the situation.
When she was recovering and was able to drive herself, she took the decal and used the handicap parking as well. She was able to walk around normally and you wouldn’t have thought she was handicapped in anyway, but she still had respiratory issues and was physically weak that walking far was difficult. You would have been one of those people pointing out to her that she was an asshole.
Superficially yes, but if there's no enforcement then the accommodations do not serve their original purpose.
My dad said if you were a young man during WW2, walking down the street not in uniform, and did not look disabled, people would spit on you. It was hard on people with invisible disabilities.
My point? I think this is a measure of how strongly we're wired to respect resources for those who need them. Which is a good thing, but obviously fails when it extends to inaccurate judgement of those with invisible disabilities.
I'm curious as to why you feel the need to say anything at all, considering you are not an authority figure. It seems like you're possibly inviting trouble by not minding your own business. At the very least, you're unnecessarily shaming people, which is not admirable.
Aha, unexpectedly relatable. That's an allowance I give myself as well. I segregate a bit, but give myself a pass after a certain amount, when it makes the difference between living in squalor and not.
Another ADHD compromise: I don't use the "eco" soaps (e.g. sugar surfactants) because, their remains are easily feeding algae (the orange one) and I, realistically, won't clean my shower every week. (Hope less than a week isn't considered the normal XD)
Honestly, I feel it's really important for ADHD people to allow themselves feeling a little disabled: We mostly endured so much misguided anger and being called lazy and such, it's healing to give ourselves that break. We're literally killing ourselves (life expectancy; suicide) over keeping up with an outside almost mechanical and estranged to human "nature". It's okay to search for our own pace and only comply with what's obligatory and possible.
(Not saying therapy and medication aren't necessary; not that it's all down to modern life.)
This is fine, honestly. I see people trying to be... tough? I don't know what they are doing, but they are blocking the lane when they refuse to sit down because they perceive it as rude.
We are all in this together, just take a seat and get out of the way!!
That being said I will give up my seat for someone with a kid in tow.
Why? Giving up a seat to an older individual is a show of respect as well as a recognition that standing for seniors is a bigger burden than it is for a young 30-something. Why would ADHD change that?
In my case was because if I tried to give space to older people, I would go nuts, having ADHD and possibly (I never tried to get diagnosed since there is no treatment) Asperger's, I just don't notice old people there... So I go, see a spot, sit, and after a while note the stares and so on.
I had to learn to ignore the stares, because whenever I was worried about being a gentleman and whatnot I ended going into crazy thinking spirals on my head, ruminating non-stop if I was offending someone or not, or not noticing someone, I would instead scare people, looking like some sort of paranoid person on the bus.
My theory is that for the part of the ADHD population the core reason is excessive daytime sleepiness/tiredness.
For example: https://www.npr.org/2020/09/17/912840482/u-s-agency-urges-en...
Frankly it feels like visiting the Dell web site: are you a small business? Medium business? I never knew what answer will give me he best price or product.
Humans are fucked up, and fucked up towards each other.
For Home vs Business, always choose business as it hides their least-attractive products.
Regardless of declared business size, I find I get the best pricing (sometimes as much as 20% off the list price) by choosing the option to speak to a sales account manager - even if the account is just for yourself. Back when I was running my own shared hosting company out of a rented quarter-rack I got some great discounts on their R-series servers and whatnot.
So, counterintuitively, the orgs with the forms asking all the probing questions about your skin color are more likely to be making an effort to not be a boring homogeneous mass of people. Maybe just for bragging rights about being a "diverse workplace," but, it's better than nothing.
This country has a history of treating people with darker skin worse, and there were several propaganda campaigns during slavery times which painted black people in particular as inferior. So now we've gotta fight against that social momentum from the past with countermeasures in the present.
We all have several “labeled” roles or identities simultaneously: parent, child, driver, citizen, voter, customer, etc. Some are simple, some quite complex and many quite ambiguous.
I think most, if not all people understand the motivation for such questions and I hope most people understand that those questions are well intended. I also don’t know of a different way to handle the issue.
But it’s not a criticism to point out the problems and ambiguities that arise.
The Harry Potter books mix this same trope in with a dash of Kipling as they look down upon and try to be paternal towards the mass of “Muggles”. Revolting!
Not something I would be willing to support, myself. Though its popularity might explain (be a symptom of perhaps) the support for certain political parties around the globe.
But seriously - these race questions seem wildly out of place in countries like Poland where 99% people are white, and sure there is racism, but there are better determinants for disadvantaged groups - like the place someone was born in, or family income.
You can just let people request help if they want it.
As a European, this was a huge WTF moment (my co-workers had the same moment). Why would you ask something like that ?
The funny part is that in Europe this is considered extremely sensitive information and there are even strictrier laws and penalties for storing those than the regular personal data.
Still doesn't really make sense at Kubecon
The stigma around being disabled is very, very real. My parents still hate that I embrace that label. They point to my uncle who is schizophrenic and has severe arthritis and who has been on disability since they were in their mid-30s and say "see, HE's disabled, you aren't!" and it's incredibly difficult to deal with. Because I'm now medicated, have a stable relationship with my partner, see a therapist once a week, and have special accommodations with my boss (mostly around taking sick leave a little more frequently than "average" but keeping him in the loop when I'm having a bad day), my life externally looks "normal". I work 40(ish) hours a week, my partner and I own a house, we recently moved back home to be closer to family, and we're happy. But I still check that little box because of all the work that it took me to get there, and because more people need to know that disability and work are not mutually exclusive.
I've started being more "out" about my disability (it's funny, my partner semi-recently came out as bisexual and I've learned a lot from her about how to own my identity), becoming more comfortable talking with people about it at work and in my personal life. I'm helping out with a new ERG at my job that talks about disability as it pertains to our field and I'm trying my best to be true to myself. It's hard because others still see someone who's "fine", but I'm getting more comfortable every day with my identity. I just hope that my being more open changes someone's mind some day about either their perception of others, or their perception of themselves.
For my Dad, simple things we do every day were hard because little things like doors and steps were huge obstacles to him. For me, it was working hours where I could not function without mid-day sleep. For my Dad, there was no way to hide the disability. For me, I looked, moved, and was normal.
Disabilities are at their core a disadvantage. Disclosing them is risky. Most people will use the disclosure for good. But just enough people will use them to deny opportunity or as a signal of weakness. There's a great fear of "reasonable accommodations" because if we make an allowance for one person, soon everyone will be requesting reasonable accommodations... So, when you check the Yes box, you are taking a huge risk.
Incidentally, I learned that checking the veteran box also comes with risk. I was once excluded from consideration from a job because the employer thought all veterans were ticking time bombs or rigid authoritarians with no moral compass.
This is actually a huge problem, particularly in the age of computer systems. If the form is electronic and not designed properly, you can't even leave a note.
Software developers often love being smart and validating all inputs, with disastrous consequences. In my opinion, 99% of validations, at least for data that's not going to be directly processed by computers, email addresses for example, shouldn't be validated at all, and most validation errors should be replaced with warnings instead.
What's an example of when a form would want to take in a seemingly invalid email address?
For that matter, future developments can be problematic: Does your validation rule allow for "@gmail.com"?
It seems better to warn the user that it might be invalid, rather than completely blocking some users from signing up.
How do you deal with them after hearing something like this? The resentment and/or feelings of guilt are too much...
Access to IAPT is very good. Latest figures are here: https://digital.nhs.uk/data-and-information/publications/sta...
> One of the stated targets of the IAPT programme is that for referrals finishing a course of treatment in the month, 75% enter treatment within 6 weeks, and 95% within 18 weeks5. These are based on the waiting time between the referral date and the first attended treatment appointment.
> 89.1% of referrals waited less than 6 weeks to enter treatment
And I have to add, it's many times harder if you're a foreigner.
I'm disabled. I have schizophrenia. It sucks. I cannot concentrate properly and I hear voices that tell me to kill myself. Fortunately I've only attempted once and failed.
I never trust companies to not use it against me though.
Here's an example form used for federal contractors: https://www.dol.gov/sites/dolgov/files/ofccp/regs/compliance...
Or more often, to make sure you don't get hired because you're likely to be more troublesome than healthier candidates :/
ughhhhh.... As a mixed-race ADHDer: Is this box becoming a thing too?
I totally get that this is a hard thing to design a database schema for (see https://qntm.org/gay). Just...oy. This is going to have a UX that reminds me of applying for colleges and trying to figure out if I'm Black or not.
We live in a world of trade-offs.
If the question isn't necessary for some reason, it should probably be left off completely, IMO. But I'm assuming they're trying to get stats for something, and some people may be okay with that. But they should still make it obviously optional, which is what that option is for.
Some people have issues with many or all things, and can easily answer 'yes'. Some people have no real issues and will easily answer 'no'. But there are a ton of people in the middle who have problems with certain situations and it's not an easy answer.
If you could answer "yes" without having to worry about repercussions, I would recommend that anyone unsure just answer that. But sadly, that's not the way the world works.
In short, the question is invalid. What is really needed isn't a yes/no response it is an appendix of what accommodations they have and already and then a blank of what you need. If you are in a wheelchair and the place already is wheelchair accessible then you are not disabled, but if the building hasn't be remodeled to wheelchair accessibility you are disabled. If there won't be a meal/snacks then your food allergies are not a disability, but if there are then it could be (could because some are you know what to avoid and can trust to find the something safe, while others are don't even have something in the same room).
But it is easier to have a yes/no question even though that is useless to everyone.
The question is for statistics. It doesn't stop anyone explaining how to ask for accommodations.
I don’t need any special accommodations. I decided to click “no” at my current job at $BigTech. My interview process was remote, I’ve never met any of my coworkers in person and probably won’t until 2022.
My job was always designed to be remote so there is no telling when I’ll need to fly to one of the offices.
In the software industry, it doesn't really affect me, apart from occasional embarrassment at a team dinner where an attempt to cut up food results in some going astray, and I consider myself lucky as most people with dyspraxia (I can't remember the exact number currently, but like 70%) also have to deal with dyslexia, something I do not have. I take notes on vim in my laptop rather than on paper like most of my colleagues so that I can definitely read them when I no longer remember them, and shrug off the occasional dropped item or overestimated doorway as clumsiness.
Consequently, most of the time, despite having an actual diagnosis, I answer "no" to this question most of the time. Like the author, the conversation of "but you don't seem disabled" is one I usually wish to avoid, and when you start saying dys- people automatically fill in dyslexia and ignore what you actually said.
The author mentions problems with speech processing, speaking,
sensory overload, sleeping, getting out of bed, eating, smells,
textures, and navigation. None of those problems were created by
society
Neither the article nor the movement in general claims that society "created" her difficulty performing those things.
The neurodiversity movement points out (correctly, IMO) that lots of people with behavioral "disabilities" are in fact quite able, but need to do things differently and may need accommodations.
It says that autism and other behavioral health issues are not necessarily inherently "bad" (just as being in a wheelchair is not inherently bad) but we fail as a society when fail to accommodate such folks.
Broadly I agree wholeheartedly with this. Ultimately it's a message of ability. It is a movement by and for people who want to achieve and be a part of society. As somebody with diagnosed ADHD this is how I approach things as well. I don't consider it a disability. I just tend to do things a little differently.
A valid criticism of the neurodiversity movement is that it seems to gloss over the fact that, well, often behavioral health issues are genuinely debilitating. A schizophrenic who hears voices in their head would probably not claim that it is some hidden strength.
On the whole though, I think the movement is a good thing. It is ultimately a message of ability and a call for inclusiveness.
What sort of mental gymnastics does it take to
convince yourself not being able to walk isn't
inherently bad?
Why not 100%? For every downside you can come up with, can't you imagine some possible way for society to make up for it? Here's a simple one: calculate the value of whatever the disabled person is missing out on, and pay them a cash compensation.
You know, when I put on ramp for someone with wheelchair, it is done. It takes some space, alright, but mostly does not affect healthy peoples days.
When I am yelled at and get insulted by an autistic because I personally did not done things in the exact required routine, then it is not nearly the same thing. It is not that we should not accommodate people with issues. But pretending these are not issues that dont affect others is not accurate either.
There are plenty of autists who go through life without 'yelling at and insulting' people.
I like how this is all about you. "Neurodiversity is b.s. because somebody with autism yelled at me!"
In case this is what you need to hear, I am sorry a person yelled at you. That's not fair to you and I am sure it was unpleasant.
It's an ethical/political (and maybe economic?) position.
Edit: noticed SM is mentioned in the article.
On this view, all the problems you mention are only
problems because society doesn't give affected people
enough support
"Being in a coma isn't a problem! It just makes you different. The problem is society's refusal to cater to the workplace needs of people in a vegetative coma state!"
All the social model aims to do is think about a separation of the impairment itself and the ways in which society may make it worse.
In some cases, sure. Lots of impairments will just be debilitating no matter what. Somebody in a coma is not going to be able to participate in society very much.
Lots of counterexamples though. For example, imagine a skilled software developer. However, she needs a wheelchair and she can't work anywhere in town because none of the buildings have wheelchair access. A perfectly able developer has been rendered disabled (or at least, unable to work) by this fact. This is somebody who could be working, if we simply build wheelchair ramps or allowed her to work from home.
The aim is merely a change in thinking? I'm pretty sure one aim is to get more resources to support disabled (or impaired) people. And that's fine. We live in a society.
What's not fine is the rhetorical trickery (motivated redefinitions of words) deployed as part of the SM.
It is not a redefinition of the word "disabled" -- it is a reexamination of what actually leads to a person being "disabled."
Unfortunately I don't know how to draw the line - that is why it is possible to abuse the system: some who need the benefits may seem better off than others who don't need them. This same argument prevents some who really should take benefits from taking them! All I can say is be careful and please don't cheat the system - everyone who cheats is evidence that we need to tighten the rules even at the expense of not giving benefits to those who need them.
It is a hard problem.
Even if you have a system that manages that: the system itself is so expensive because of fraud prevention that it isn't worth it.
Of course it depends. A few handicap parking spots are cheap. Printing user manuals in Brail is more expensive but not too bad if you limit it to those who actually know read brail. Keeping interpreter on staff for every minority language is expensive.
Now that I've added a lower back injury to the list, I think it's tipping toward yes. Does anyone know if you say no on this form and then ask for an accomidation for something, like, say, a chair - is that okay?
Most of the time, it's pretty invisible for me and everyone else, but there are things in day-to-day life that are a chore if I think about it, such as cutting food with a knife, exercising, or even trying to hold something at a certain angle with my hand can be uncomfortable. It's kind of silly, but I also can't play guitar standing up, as the angle of turning my wrist over is too uncomfortable to stay in position on the fretboard. Sitting down is similar, but I can play longer as I can hold my elbow closer to my body.
[1]https://radiopaedia.org/articles/madelung-deformity?lang=us
In a mechanistic universe, no such teleology exists and nothing truly makes sense anymore. But for the most part, mechanists, like skepticists, exist only in highly rarefied environments like graduate seminars, or deployed selectively to rationalize some perverse desire. And when this mechanism does enter daily life, it does so to their detriment.
Yet, I am not disabled. One day I’ll be legally blind and then I’ll be disabled.
I think if there is a spectrum issue then some people will be in the spectrum but not count as disabled. Autism is a poorly understood disorder at least when it comes to determining how it affects your life. Maybe in the future it will have a legal definition that can be easily tested for.
I suspect that the author is closer to the norm on the spectrum since they went for 42 years of success without knowing the problem existed. That’s how it was for me with my eyes.
My brother in the other hand is autistic non verbal, and there never was any doubt he was disabled.
Is this an Amercian thing?
https://www.wsj.com/articles/SB10001424052702303287804579447...
The thing is though, a wheelchair is a very easy example - it's obvious and it's understandable how acommodation can help. But when it's an invisible thing, like a cognitive issue, or hearing loss or chronic pain, it's a lot harder to address. It's easy to say "we will put in a ramp for you" for someone in a wheelchair. Not so much for the more "abstract" disabilities that aren't visible.
As usual, archiving bypasses this nonsense: https://archive.ph/tDOQy
Long time ago I worked in a small company were they hired a deaf girl as a trainee. One might think that it's so nice that they give disabled persons a chance (in her case the inability to hear unfortunately affected her ability to read as well, to the point that my boss discouraged me from teaching her the use of e-mail) however the company received some 100 grand/a (a lot of doe in Germany then) from the government for her professional development, so the company gained a little even if she wasn't all that productive. I don't think the company had any intention to hire her afterwards.
It’s a kind of personal question to be asking.
While was doing all the operations and recovery/physio/etc I had a disabled driving permit, couldn't walk a block on crutches, but gave it up once I could walk again, there are people who need those spots more than me.
I think that disability is a continuum, I've certainly moved around within that, it could be anyone, it could be you or me (I stood in a hole crossing the road, watching the traffic rather than my feet) mostly I guess we should push against there being stigma, acknowledge that disability is normal, and making sure that those with more extreme disabilities get the support they need so we can all take part in society equally
It's invisible, but walking hurts. The more I walk, the more it hurts. Damn, I used to go on weeklong treks...
Anyway back to the "am I disabled" topic. I guess it depends on when you're asking.
Good luck!
I ask, earnestly.
You can be disabled and sometimes force yourself to do things without accomodations via willpower, but it may have consequences for your mental/physical health and shouldn't be expected of anyone.
Eg. Chronic fatigue. If you push through the boomerang effect can hit you like a truck.
If we had another, standalone, word for people with various conditions and limitations it wouldn't be seen as something to pity, and people would be more open about who they are and what they can and cannot do.
It affects something so essential, but it's hard for people to recognize it.
I live in the Czech Republic, good glasses with a titanium rim will cost about 500 eur and last for around ten years.
I personally prefer daily contact lenses (the kind that you discard before sleep) which cost me about 400 eur a year; I know this is a bit of a luxury, but even this only touches the 1% of yearly developer income. Glasses would be in the 0.x% category, depending on how much your acuity changes over time.
You are doing something wrong.
Based on my masochistic choice for projects in past years I think I'll answer "yes" to this question. Something changed in my brain in past years because I started to enjoy projects that are a pain in the proverbial rear while the normal ones just bore me to death. And also pays better.
Hits hard. But its time to take a break, and heal.
Being human is so raw. Disease is such a dual edged sword. So many feelings i think i would never have had.
I've got a 2 year old who is deaf / blind and has serious cognitive issues. Since me and my wife both do well in the game of capitalism - we are entitled to none of whatever "safety net" exists.
If you can survive without showing your disability, that's what works best in America. There are horror stories of people losing entire careers and there way of life - because they told their superior about the burdens of raising disabled children. Its better to hide these truths, everyone will have a better chance of survival.
My parents ended up as antivaxxers when 2 of my siblings were diagnosed with autism. My 3 youngest sisters aren’t vaccinated, and one of my autistic brothers isn’t up to date on his. Which is crazy to realize that damn, my mother would rather risk having my little sisters die from a horrible disease than risk them being anything like their neurodivergent siblings. I’m the eldest, and with adhd I was always treated differently, but not to the same degree. This passage really helped me understand the anguish that has lead to multiple suicide attempts by one of my brothers.
On the other side of the coin I had an unforgettable interview experience for a role that really questioned my pro-viewpoint on disability in the workplace. Prior to this interview I was a firm believer that anybody should do the job they want and overcome obstacles. Afterwards, ths changed.
Prior to the interview, the recruiter phoned me and said "Just a heads up, you might have a little difficulty in speaking with the CTO due to his disability, but I'm sure you'll be OK". A slightly odd conversation but I appreciated the information ahead of time.
Upon arriving at the conference room the lead engineer (Alice) said "Bob [CTO] works remote and a word of warning - you might have a little difficulty in understanding what he says, but don't worry I can help if you get stuck". That's now two people who have warned me.
Bob had a degenerative illness which made his speech stutter and slur heavily.... to the point I could not understand _anything_ he said. Nothing. It was like trying to understand someone who's clearly drunk more than they should, to the point of nearly blacking out (I'm serious here).
When he joined the company 10 years prior he was perfectly fit and healthy, and within 5 years became CTO of the startup. He was still healthy at this point. All good.
Bob developed illness which impaired his speech so much _every question_ he asked me had to "repeated" by Alice sitting at the table beside me. Every word that came out of Bob's mouth had to be "repeated".
It was impossible to verbally communicate with Bob wihtout Alice present to translate. It took 2 very long minutes to ask "how are you today?" at the interview start. 120 seconds. How was anybody going to effectively communicate with this person on a daily basis or have technical verbal discussions!? If they said communication would be written text only with the CTO I doubt I would have accepted the interview.
To me engineering is all about communication. You communicate ideas in varying degrees of technical depth to cater for your audience, who in turn communicate their ideas to other parties - be it board level, juniors, external parties or even the accounting department. Communication was totally broken here.
What was most concerning was Bob didn't seem feel his disability was serious enough to step down from such a role (or management didn't want to suggest he step down... maybe through fear of law suit?). His inability to verbally communicate anything would have a bit impact on their product development.
The company did ask me to return for a second/final interview (they phoned the recruiter within minutes of me leaving the building..) but I politely declined. It would have been impossible to work with Bob.
in bob's case, he has ten years worth of company technical/product knowledge in his head. he probably still has a lot to contribute to the company, but they ought to find a role for him where so much verbal communication is not required. maybe they have already done this, and bob actually spends most of his time talking to people who are familiar enough not to need an interpreter.
From your original comment:
> It was impossible to verbally communicate with Bob wihtout Alice present to translate. It took 2 very long minutes to ask "how are you today?" at the interview start. 120 seconds. How was anybody going to effectively communicate with this person on a daily basis or have technical verbal discussions!? If they said communication would be written text only with the CTO I doubt I would have accepted the interview. > To me engineering is all about communication. You communicate ideas in varying degrees of technical depth to cater for your audience, who in turn communicate their ideas to other parties - be it board level, juniors, external parties or even the accounting department. Communication was totally broken here. > What was most concerning was Bob didn't seem feel his disability was serious enough to step down from such a role (or management didn't want to suggest he step down... maybe through fear of law suit?). His inability to verbally communicate anything would have a bit impact on their product development.
> ... It's not really comparing apples to apples.
I disagree, it's an apt comparison. Bob obviously had sufficient technical experience to do his job, that's why he still had it, in spite of the communication problem. Stephen Hawking likewise had valuable contributions to make in his own field and had to communicate those ideas widely, so people helped him to communicate and looked past the difficulties; they didn't find it concerning that he wouldn't step down because he couldn't speak.
The fact that you couldn't work with Bob's speech issues is, frankly, your problem, not his.
Two years ago, on a submission titled "Laziness Does Not Exist but unseen barriers do", one of you all used the term "invisible disabilities" [0]. I found this to be descriptive of what I've experienced since I knocked myself out at the lake when I was 17 years old. From my reply to [0], "I used to think I mostly recovered from that head injury, but I've recently realized that it left me rather non-functional. I'm making progress, but I guess I'm 'invisibly disabled', in certain ways."
In the beginning I went to some doctors trying to figure out my nerve condition. One of the tragedies of modern medicine [1] is how sometimes doctors diagnose their patient and treat the diagnosis, instead of looking deeper for causes behind the patient's symptoms. Such is the essential nature of a 10-minute office visit. I did get a helpful idea recently -- a PA suggested my one symptom indicated 'allergies'. My subsequent searches turned up better treatments than the medications I was prescribed.
Recently I made a disability-act complaint with the state attorney general's office about being discriminated against by a business. The main thing was they didn't realize they did anything wrong, and I'm not the only person getting discriminated against in that specific way. I figured that by making the complaint I was also helping others who are similarly 'invisibly disabled', much worse than I am, who aren't capable of figuring out how to stand up for themselves against societal idiocy. The state Attorney General's office was swamped with similar complaints. It was 1.5 months before my intake interview. I don't know how many complaints they decide to go with, but I had my story and documentation in order and the AG's office agreed to file charges on my behalf. I bet the business won't even remember me.
tl/dr: many people have chronic conditions. Sometimes people can recover, sometimes they won't, but I think it important to help people maintain 'hope' that they can do something to improve their situation, or find some insight into their predicament that provides a silver lining. Christopher Reeves' [2] comes to mind. Two quotes:
"When we have hope, we discover powers within ourselves we may have never known- the power to make sacrifices, to endure, to heal, and to love. Once we choose hope, everything is possible."
"You play the hand you’re dealt. I think the game’s worthwhile."
[0] https://news.ycombinator.com/item?id=17721273
[1] https://news.ycombinator.com/item?id=25355990
[2] actor who played Superman (1978) & became a quadriplegic in 1995 after falling off a horse...
Everytime i open social media someone has some disease I have never heard of but when googled has the same symptoms of a basic cough. lol.
You should come to India. People here are quite chilled out when it comes to physical or mental problems. They dont see a form and go well. This hurts my feelings
Here is how "chill" the situation is in India by the way: https://www.theguardian.com/global-development/2014/feb/27/i...
I am more often talking about mental disability BTW. I should have been more clear. There are problems here too. But its only for the severe causes. Mere depressions which these days are shown more as coolness and victimhood are symptoms of the first world. When you are worried what you will be eating or feeding your child at night, you don't have time for depression. You are worried and tensed but not depressed. In first world country you are far well off. You guys are worried about stupid reasons. Yeah. They are stupid.
Come live in a third world country once. You will understand what I am saying. Victimhood here won't last you far. You will starve.
I hate this question BECAUSE it pressures me into admitting I have a disability, that I'm a "victim", when I would rather not do that. Victimhood doesn't get you ahead in the first world either - that's why so many disabled people react negatively to this question - because it makes others see you as either a victim (if you say yes) or a liar (if you say no). Just listen to how you perceive disabled people in the first world - in my situation wouldn't I have every incentive to hide my diagnosis from you to hide that fact from somebody like you so you didn't see me as a whiner taking advantage of sympathy for disabled people to seem cool?
P.S. The first world is seeing self-reported depression and suicide rising simultaneously. Certainly some people think it's cool to be depressed, but maybe more is going on than westerners becoming image obsessed given people are killing themselves more and more.
Don't be lazy and assume that anyone else has it easy, especially minorities, women, and the disabled. If I were allowed just $15-20/week for food, I'd be suffering a lot less from constant hunger than I am. Trying to get that much money while forced into Adult Foster Care is almost impossible, requiring many hours of work to fill out surveys and job applications that are never responded to. I'm smart, relatively alright, and there are the only open work for a high school graduate. I am told I'm not eligible for student grants due to paperwork that was misfiled after receipt due to someone else refusing to do their paid job. There no way 8 could afford $50,000 out of pocket, or waste 4 years at 38 to get a degree with no reasonable chance at getting a job. I'd have to pay several times more, go to one of the top ivy league schools just to get a 20+% chance if receiving what is termed "substantial gainful employment", which would more than likely be 60 hours a week at the local $10.75 minimum wage, which up until the last ~2 years, was one of the jihad minimums in the entire country.
So thank you for your input. I don't expect you to read this. There are far too many words present due to autism. But please don't presume to understand the legitimate struggles of people on "first world" countries, many of whom are not treated well if they fail to be born white male, and upper class. We are reminded of the birth caste system in India, of which I read about many office employees usually men, who are born into the "wrong caste" and are actively discriminated on in US workplaces, even inside global multinational corporations such as Microsoft and Amazon. Occasionally to the point of being murdered for it.
I don't believe that many people have a truly good and privileged existence. I don't make those assumptions except about sociopaths who think they can rightly victimize others and get away with it through manipulation, lying, and money. People, including yourself, could stand to be a lot more empathetic and kind. It's not required of you but it does help others who may or may not be worse off than you or I. Thanks.
The question is meant more as a metaphor for a larger problem american culture (in particular) has with lumping a lot of very different things together as "disabilities" and the problems that stem from doing that.
Like the author said, if a (public) building is physically inaccessible by a significant subset of the population then the building design is the thing that needs attention and reconsideration not the people.
In other words, we should put more effort into designing systems and things that accommodate differences rather than asking people to identify with the poorly defined and highly contextual term "disabled" as if that's a solution to anything.
That's closer to the point of the article, despite going over and over the question for the sake of poetry.
But I digress, your problem in this case is that you "open social media" (made up of millions of people worldwide) and seem to compare it against just your own experience. I'm glad you're healthy.