After a conversation the other evening with a friend who is exploring his options in terms of asking for accommodations at work, working until age 65, SSDI and other permutations of life, I was reminded of the often experienced mixed societal messages you get if you have a severe disability: sometimes you have to prove that you're sooooooooooooo disabled, and other times, it's, "Oh, the power wheelchair? I was just feeling a little tired today..."
If you are disabled and are working or want to work, as a threshold matter you've got to show that you're "otherwise qualified". This means that you meet whatever the pre-determined set of criteria is for the job, and that you are able to do the "essential functions" of the job. It is up to the employer to determine what the essential functions of the job are. This is why more and more official job postings of essential tasks will include minutiae such as "must occasionally be able to lift up to 50 lb", "this job is sedentary; must be able to sit for 6-8 hours a day", etc.
In an utopian world where we could be sure that such "occasional" lifting of 50 lbs. wasn't put in the job description to exclude anyone with a severe physical disability, we could interpret this careful sifting of job tasks as a thoughtful employer informing potential applicants of all of the tasks that might arise...
In the real world, if you're hired for an office job, unless you're in charge of moving around and installing computer equipment, nobody is going to make you lift 50 lbs. Elmer Employee says, "sorry guys, I've got a bad back," and somebody else gets the move the supplies around assignment.
But, if you show up to the interview on crutches or in a wheelchair, and they've got the lifting requirement down already in the "essential functions", then they have an easy way to exclude you from the job without getting busted for discrimination. And, if you don't think this is happening every day... Well, let me know what meds you're taking.
Hidden Disability? Don't Ask, Don't Tell!
The question I get asked most often by people with hidden disabilities is whether or not they should tell any prospective employers about their disability. First of all, I say, you have no legal obligation to disclose a disability, unless and until you need to ask for an accommodation at work. Secondly, if you know you will need an accommodation/s if you get the job, don't disclose and don't ask for them until you have a firm job offer, preferably in writing. The reason for this second rule of thumb is simple -- they can't discriminate against you because you have a disability if they don't know you have one.
Some young people, who may not have ever been looking seriously for a job before, raise a question of whether or not this is dishonest. My question to them is, "do you honestly believe you can do the job?" If the answer is yes, then I don't think one is any more obligated to disclose a disability than you are your marital status or religion -- another 2 things a prospective employer can't ask you.
I Use a Wheelchair, But I Can Juggle...
So you're trying to get or keep a job and you are mitigating your visible disability like mad. Unless and until an issue arises that calls into question your ability to do the job, even if you use a wheelchair they shouldn't be asking you about your disability. If you are blind, for example, and the job involves using a computer, an interviewer may ask you how you will perform the essential functions of the job. This is your opportunity to describe your use of various assistive technology, including software such as screen readers and voice recognition software. Even though it is legally your employer's responsibility to accommodate your disability, if you can't tell them the accommodations you will need at this stage of the interview, you will most likely be dead in the water.
If you do need to request an accommodation, you will need to submit your medical documentation of your disability. The letter should give your diagnosis and then describe any functional limitations you might have, and how they might be accommodated. Be prepared to submit this letter even if you're dealing with a supervisor or an employer who seems to be nice and doesn't seem to have any kind of official process.
Quite often, the employee is put in an untenable position when dealing with the "nice" boss, because they may get offended if you try to be really businesslike about the process. However, if nothing is in writing anywhere, that nice boss can turn on a dime and say you are performing your job inadequately later. Yes, this has happened to me, and it was the worst year of my entire working life.
In addition, you might have the idea that employers who work in disability services, human services or medical services would be better about disability accommodations and about discrimination in general. You would be dead wrong. If you doubt me, ask yourself how many medical offices, doctor's offices you've been to that were less than optimally accessible. [FYI, doctors' and dentists' offices are considered "public accommodations" under the Americans With Disabilities Act, and thus are required to be accessible.]
You Become More Disabled
So you've managed to negotiate the shark infested waters, and you've gotten a job, and kept it for a while -- maybe a long while. Except that now, you, like many of us with severe disabilities, are becoming more disabled with age, or with progression of your condition.
As discussed in a prior posting, it is disadvantageous to you, in terms of how your benefits are calculated, to gradually phase yourself out of working. This is because most types of benefits are calculated on the most recent quarters worked; if you decrease your income in order to work longer, part-time, your most recent quarters may well be significantly lower than your pre-phase out income.
If you're applying for a disability retirement, SSDI and the like, you now have to prove the opposite case to the one that got you the job. You have to show that you're sooooooooooooooo disabled you can't possibly hold down any job at all. Also, the more education you have, the harder this may be to do. Because Social Security especially wants to know if you can do any job, not just the one you've been doing.
If you have a disability that is on Social Security's lists, such as multiple sclerosis or rheumatoid arthritis, it might be easier to make your case. Think of these lists as disabilities that they have vetted and found to be scientifically proven.
Prepare yourself for a drawn out process and multiple appeals. This may or may not happen to you, but chances are it won't be easy. You should also be as sure as is humanly possible on what you want -- i.e., to not work, to work full-time, to work part-time. Consider all of the issues, particularly quality of life, how much income you need, and whether you will have health care coverage of some kind, regardless of what choice you make.
Arguably, the civil rights laws of the last 30 years that have attempted to open up access to people with disabilities to all aspects of society -- education and employment most importantly -- have worked to a limited extent. However, the stigma and discriminatory behaviors of employers and bureauacracies are alive and well.
The civil rights movement for people with disabilities is, I believe, where the racial civil rights movement was in the 1950s and '60s. We have a very long way to go.