According to the United State government, disability is “the inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment(s) which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months.” Or, in non-regulatory terms, disability is when a physical or mental impairment will last at least a year and will make someone unable to work. The ability to work is right there in the definition. A person who cannot work is disabled. If that person can work, they are not disabled. Disability and employability are mutually exclusive states of being.
That definition comes from the Social Security Administration and is applied to people applying for disability benefits, basically a wage replacement program to compensate for the salary the person cannot earn – so the focus on employability makes some sense. But more and more, I see this framework for defining and evaluating disability applied outside the benefits context, in deciding if someone is “‘really’ disabled.” It’s also notable that these wage replacement programs are the most commonly known and discussed form of disability-based benefits – while I’m used to seeing articles about how to handle the Supplemental Security Insurance (SSI) program, I rarely see coverage of programs from the Department of Rehabilitations, which provides vocational training and support to PWDs. And the false equivalence of disability and unemployability is problematic for a lot of reasons.
- There are a whole lot of people with disabilities who are not employed due to problems with the economy and with employers who discriminate against PWDs when hiring or fail to sufficient accommodate PWDs while employed. Assuming that unemployment is due solely to a person’s disability status, rather than systemic stigma and discrimination, places the responsibility for finding and keeping a job solely on the shoulders of the PWD. This shifts focus entirely away from the employers who have ultimate power over whether an individual is going to have a job. Take a look at employment statistics for the federal government itself, where “the severely disabled represent 0.94 percent of the government’s workforce.” And despite those low numbers, the government has no problem telling people that unemployment is a disability issue.
- When disability is defined as an inability to work, that overlooks an enormous segment of people with disabilities. About 37% of PWDs in the United States are employed – 8,581,869 people. But their ability to work does not negate or erase their disabilities. Those disabilities continue to exist and implying they do not lets employers off the hook for acknowledging and accommodating those disabilities in the workplace. It is already easy for an employer to overlook an informal request for accommodation or demand overbroad access to private medical files to “prove” whether or not the requesting employee “actually” has a disability in response to an accommodation request. It’s impossible to say how many employed PWDs have successfully requested and received needed accommodations relative to those who have been too intimidated to ask or had employers unwilling to fulfill their legal obligation to provide accommodations. But I would venture to guess that it’s quite difficult and involves risk for the individual employee. The stereotype that people who can work are not disabled and do not “really” need or deserve accommodation only encourages this behavior.
- In our society, employability is often equated with worth and value on a fundamental level. In the current bad economy, lots of people have been losing their jobs, and half of them feel that being unemployed has changed their lives for the worse. Being unemployed is seen as shameful, humiliating, a sort of failure to grow up and develop into a “real person.” Obviously, having “disabled” be seen as a synonym for something with those negative connotations does a disservice to people in both groups.
Your second bullet-point especially resonates. Thank you for posting this.
A++ post, abby jean. As someone who will possibly be entering the workforce in about a year I’m appreciative of having my awareness raised about an issue I hadn’t considered.
I think one way to at least partially resolve the issue would be to create two categories of disability: one category to define PWDs whose disabilities do not prohibit them from working for a full year at a time but who will require accommodations in order to be able to work, and being placed in that category will reinforce their eligibility for accommodations (guidelines for which would, ideally, be encompassed in that same section of law); and one for PWDs whose disabilities render them unemployable for a year or more. So Category A would entitle someone with severe ADD to a quiet workspace, or someone with anxiety issues to work from home when necessary and remove the equation of disability with unemployability. Category B would be more or less the current “disability” status.
(Of course, that raises all kinds of issues about disclosure, especially with invisible disabilities. If I have anxiety and depression that are well-controlled now but have the potential to come back and be debilitating at basically any time, but also has the potential to not come back for a year, or two, or seven, am I obligated to inform my employer of that once I’m hired? Or do I wait until it gets bad again? And ditto anything else recurrent. And what if it’s manageable enough that I’m part-time-employable but I can’t do 40 hours a week?)
It sounds like a lot of those “If you can do [insert activity here], then you are not really [ insert disability here]” arguments that a lot of people come up with when they really feel a need to somehow ‘prove’ that someone isn’t really disabled (often the argument is made for some specific disability) but faking it for whatever reason.
Monica,
Disclosure of disability is a very complex and sensitive matter when it comes to employment.
You can NEVER know if the reason someone hires someone else over you is because of whatever ideas they have in their head about disability (or your disability in particular) or whether you wouldn’t have been chosen without that factor anyway. There is NO way to know it, or ever prove it, no matter what the law says they can’t do. Once you are already employed, whether or not you can count on being able to safely disclose your disability and request accommodation depends on how cooperative your boss is, how sympathetic a jury would be to your case if you end up having to sue, and whether you have the material resources to sue if it comes to that. If your boss ain’t cooperative, the situation isn’t clear-cut, you aren’t a “good crip,” and/or you don’t have the resources to sue — you get to deal with the consequences of discrimination yourself.
If you can control your passing, it’s probably best not to disclose your disability before being hired, because no matter how much you think you can trust a person/group/company, they still might just toss your resume out of consideration altogether because of it (not necessarily purposefully — but the way PWD are discounted, distrusted, disvalued and the people doing the disvaluing don’t even realize they’re doing it). If you need an accommodation, you pretty much have to disclose in order to request it, there’s no getting out of it. The rest is up to your own comfort level with the people at hand and your own assessment of the situation. But don’t think that there’s no way it could come back to bite you. Because, as far as I’ve seen, it’s the exception to the rule when it doesn’t.
@Monica – thanks for your response. what you’ve described is basically the framework of disability laws here in the US – there’s wage replacement programs and rights protections (or accommodations). the wage replacement programs (SSI, disability pensions, short term state disability insurance, etc) are for people who can’t work due to their disabilities. but the rights protections are for all people with disabilities, regardless of their ability to work now, in the past, or in the future. these are things like discrimination protections (in employment, housing, banking, etc) and access protections, or accommodations — modifications to usual policies or procedures to allow meaningful access to a PWD – these are required of government buildings and policies, private businesses, schools, etc.
there are, indeed, a lot of issues about disclosure around all this, especially documentation or verification requirements of the disability and its functional effects. and there are also a whole lot of issues around enforcement – when an accommodation is denied, it’s up to the PWD to follow up and file complaints and prove everything and etc. and i believe that’s partly because so much of the focus is on the wage replacement programs and the assumption that disability and employability are opposites.
I hate how people’s worth measured by their ability to labor. Too often we hear “but she/he will never be a productive member of society!” about folks with disabilities. Or single moms (like raising children isn’t productive???). Funny how nobody ever says that about rich folks who don’t work because they live off investments or inheritance.
@Lake Desire – that’s because rich people don’t need to do anything to be interesting/valuable/productive; they just need to spend money. My brother likes to say that the only right Americans actually have (in practice) is the right to consume.
Being unemployed is seen as shameful, humiliating, a sort of failure to grow up and develop into a “real person.”
Yes, this! What you do seems to be in the social consciousness what you are.
I personally am struggling with my old college assuming I didn’t need accommodations, because I’m not really disabled if I can go to college. So, I gave up and am being a bad activist and I put in an application for a different school.
@thetroubleis
I don’t know if your last line is sardonic or in jest, but I must challenge it. The internal scourge of “bad activist” has lashed me too many times. Deciding to leave a toxic environment is not “being a bad activist.” We can’t expect ourselves to always advocate everywhere, because we will fail.
Our social justice project is wide and tall and very, very long. We contribute what we can, and we build on the work of others.
I ended up in a situation where I had to resign from a federal government job when what I consider “reasonable accommodations” could have kept me working.
Specifically, I was doing data entry. My *accuracy* was several points above the required, but I just *could not* enter the forms as fast as required. (sarcasm alert) Could this possibly be because to stay sane I am on one medication that messes with my memory and another that can affect coordination? Not to mention I was tapering *off* one medication and *on* to another one that aren’t recommended to be taken simultaneously for much of the time I worked there.
What I *wanted* and didn’t get was a disability waiver down to the next lower pay grade’s standards. I was perfectly willing to take the pay cut and lose the possibility of getting incentive bonuses for speed/accuracy, but instead I got cut loose and basically forced to resign.
I plan to attempt to *get* that waiver when the next season begins so that I can possibly do this again *next* year, because the money was good and the atmosphere relatively relaxed. And also because having a job meant I didn’t have to feel that “I’m worthless because I’m unemployed” feeling. Especially since with me (and probably with a lot of other unemployed people, disabled ones in particular) that feeling shades into “I’m *unemployable*, not just temporarily not working for pay”.
Wow, that’s just the worst definition of disability I’ve ever heard.
Incidentally, last week I went to a government health official (I’m in Germany) who defined disability thusly:
“You’re disabled when society fails to accommodate to your needs.”
I was very impressed considering that this came from a neurologist.
.-= Kowalski´s last blog ..Ponderables of the Week =-.
This sort of attitude is the reason I was never encouraged to identify as disabled as a child, and my parents put a lot of time and energy into teaching me to ‘pass.’
It also induced a whole lot of self-loathing later in life when I figured I couldn’t do everything “normal people” (please note the scare-quotes! That’s how I would have phrased it back then, though) could, particularly with regard to employment -and ‘disclosing,’ of course, would never have occurred to me.
Once I started taking my own individual needs seriously, I was able to figure out something that worked for me – at the moment, this means working part-time. But a society that conflates a person’s worth with their job and how much they earn is not a wholesome, nurturing one. I wish it were different.
@Jesse the K,
Thank you. I’m sort of joking and not at the same time, I guess. The disability services guy just refused to believe I was disabled, at all, even with my case worker talking to him as well. I didn’t really like my old school too much anyway and it was just supposed to be a stopping place, but not being listened to sucks.
I know I’m not really a bad activist, but I still feel like a bit of a failure.
Oh my god, thank you so much for posting this. I have some experience dealing with the Social Security Administration and SSI in particular. It’s definitely a frustrating feeling to be put in that mental mind-trap of being “unable to work.” Because of the value our society places on work, it can then feel like you are worthless. Also, there’s the added social stigma once people find out that you’re taking “government handouts” when perhaps you “look fine” (something that is the case with many “invisible disabilities”).
Some things of note: even if you’re on SSI, the Social Security Administration encourages you to get back in the workforce. You’re able to earn up to about $700/month (not sure on the exact figure), and they reduce your check based on a funky formula. [Total SSI – $20 – $61 – (Money earned/2)]. I get repeated mailings from the SSA about the “Ticket to Work” program, which is a job training/placement program for people on disability. I don’t know if they place you in jobs stuffing envelopes, or something more suited to your skill set. The SSA also lets you create a bank account that is intended for future employment needs – education costs, for example. (Because if you’re on SSI, you can’t have more than $2000 in resources. Thus, you have no safety net if your car breaks down or some other emergency happens.)
Another recent development is federal stimulus money has been allocated to the Social Security Administration to cover the administrative costs of more SSI redeterminations, to see if people are still eligible for SSI. Full notice here: http://www.ssa.gov/OACT/ssir/SSI09/Highlights.html . It’s towards the bottom of the page. An excerpt:
“the main tool in evaluating whether disabled individuals continue to satisfy the medical eligibility requirements of the SSI program is the continuing disability review (CDR). In recent years, due to reduced funding for such efforts, SSA has had to defer some of these program integrity efforts. However, with the funds appropriated to SSA by Congress in the Omnibus Appropriations Act, 2009 (Public Law 111–8), we expect to conduct 1.7 million SSI redeterminations, an increase of nearly 500,000 compared to FY 2008. Furthermore, estimates continue to indicate that SSA will achieve a savings in Federal SSI payments of roughly $10 for every $1 spent conducting additional redeterminations above our base workload volume. The FY 2010 President’s Budget includes $759 million for our program integrity efforts, an increase of $255 million from FY 2009.”
This post sort of helped me wrap my head around something my mother said to me over the holidays. I was telling her about a friend of mine who is diagnosed with the same physical disability as she and I used the word “disabled” to describe my friend (probably misused it, in hindsight). My mother took this to mean “on disability” rather than “identifies as disabled” and lamented how everyone she’s ever met diagnosed with this condition is on disability but she still pushes herself to work through it. I didn’t have a response for her then because it’s a common enough complaint for her that I’d begun to tune it out. It wasn’t until recently that I realized how much this condition actually affects her because she has always labored to keep up appearances and make sure we felt we were “normal.” For much of our lives she did this as a single parent of three children (each with our own special needs), went to grad school, was active in church and worked full time. I still think of her as superhuman sometimes, but I see the toll it’s taken on her to work so hard all these years. If I could have changed anything, it would be that she had known all along she didn’t have to be superhuman to be loved and special.