Thursday, February 04, 2010

On Job Seeking and Disability Acknowledgment

Recently, I made the acquaintance of someone who works with [Non-Profit Organization Meant to Help Job-Seekers With Disabilities Find Work]*. I was referred to this person, in turn, by another person via [Generalized Job-Search Assistance Firm]*, which my former employer set things up with to assist laid-off workers.

So far that firm has actually been surprisingly helpful -- I mean no, I haven't found a new job yet, but I've definitely got my resume in much better shape and I've got a decent idea of where to start.

But anyway, I'll get to the point of this entry: during a recent meeting with my go-to person (whom I'll abbreviate as GTP from now on) at the firm, I had an interesting experience with "not passing".

I had not mentioned specifically that I was on the autistic spectrum, and had not intended to bring it up unless it became inevitable or "absolutely necessary".

And I have to admit I was sort of assuming I was "passing".

But then, out of the blue (from my perspective), at one point during the meeting the GTP asked if I was "able to establish eye contact".

That, in turn, led into a discussion about disabilities, and disclosure, and "barriers" I might face in my job search. My GTP noted that she could tell I was "bright" and "able to work", but that clearly I would likely encounter some difficulty in, say, an interview setting (and there are also various "on the job" issues that would likely come up, but first things first).

This got me thinking: at my prior job (the only job I had post-college, in fact), I never had to deal with the Big Interview that "regular" new prospects went through, seeing as I'd already proven my technical prowess as a summer intern (a position I was assisted in getting via a family member who worked for that company).

And I did face difficulties at that job, but managed to stay employed there anyway -- probably in no small part because I started figuring out some things about how my brain worked, and was able to actually put some terminology to it (one reason I'm glad to have an actual diagnosis; some people may not need one, and some might disagree with the concept, and I myself disagree with "medicalizing" autism -- but right now, for many of us, a diagnosis is really the only route to actually getting needed accommodations, etc.).

So, to make a long story slightly less long, I got referred by the GTP at the job-search assistance firm to another GTP who is affiliated with the aforementioned nonprofit. And it sounds like they may actually have some information and/or resources that would be helpful to me (and others like me).

But: in order to get "officially" involved with them I would have to get a "verification of disability" from a medical professional. As in, my doctor would have to fill out a form, which I guess I would then give to the agency (or something).

That should not be too difficult for me -- so long as my COBRA application went through, I should have access to the same doctors I was seeing prior to the layoff. And I can't imagine [particular doctor] refusing to fill out the form (though I am slightly worried that they perhaps won't have time).

But: that's me. I am all kinds of lucky and privileged (class privilege, white privilege, etc.). This means that while, yes, I am disabled in some respects, I also have a lot of "safety nets" in my life that help reduce the amount of sheer fail I'm likely to encounter when things go badly.

And...not everyone who might presumably need help with their job search is going to have access to these safety nets, nor to professionally-sanctioned "proof of disability". I am not blaming the nonprofit for this -- it's part of the culture we're in, to imagine that "gatekeepers" must exist between individuals and services. And there may be good reasons to have those gatekeepers in some situations.

Still, though, it worries me to think that there might be some other autistic person out there who might not even have an official diagnosis, let alone an accessible and willing professional to fill out forms for them. People of color and folks from low-income backgrounds, so I've read, tend to be way under-identified with developmental issues; instead they get presumed to have "behavior problems". As a middle-class white nerd living in Silicon Valley it is not lost on me that (aside from being female) I'm probably in the Most Likely To Be Identified group as far as ASD is concerned.

There are also logistical challenges that go along with this sort of thing (forms, setting up with nonprofits and service organizations) that, heck, I don't even know if I will be able to handle myself, and I'm in a pretty good position (all things considered) for someone of my neurology.

So...I am not sure where I am going with this, except to say two things:

(1) Please, if you are a professional or just a Concerned Acquaintance, or friend, or family member of a disabled person who is looking for work, do not think you are somehow helping to say things like "oh, don't call yourself disabled! You're too smart/talented/good at [thing]! Why do you want to sell yourself short?"

Not only is this incredibly patronizing, it could very well end up feeding into the disabled person's already-present internalized stigma. And making them reluctant to even use services that might be a huge help to them, because of "not wanting to define [self] as 'disabled'", even when it's actually quite contextually appropriate to do so.

(And I am writing this in part to encourage myself here, because I actually have a lot of internalized stigma myself, and have been feeling guilty all day about the prospect of benefitting from a service meant to assist disabled jobseekers. Even though I was referred to the GTP for this service by someone who called me out on my own disability because they could see it themselves. *headdesk*)

I realize that some of this kind of response might stem from the fact that some people equate "disability" with "sickness", or more generally with meaning a person is intrinsically broken or damaged.

I've taken part in some very frustrating discussions wherein the other party just does not seem to get that disability does not HAVE to mean anything bad, but is rather a neutral description of a situation that needs to be addressed (i.e., that I have non-standard needs in some areas, and that no, pretending they don't exist is not going to make them go away).

Also, I don't put any stock in philosophies that seek to build up some people's sense of self-worth at the expense of others. Hence, no, I do not consider it reassuring when someone tries to assert to me that I shouldn't apply concepts like "disability" to myself because that would mean failing to distance myself from the sorts of disabled people who are presumed to be tragic, pitiable, and undesirable.

When from my point of view, the problem is that pity is ever considered appropriate to apply to anyone, regardless of type or "magnitude" of their disability. There is no way you can simultaneously pity someone and see them as an equal, and it is grievously wrong to figure that someone who discloses or displays non-standard needs is somehow asking for pity. They aren't, and it's beyond insulting to presume they are.

(2) It does not actually help anyone to figure that people like me (that is, college graduates with engineering degrees and whatnot who are also on the autistic spectrum, etc.) are somehow "polluting" or "appropriating" the meaning of what it is to be autistic, or disabled, etc., to the detriment of folks who currently lack abilities we have.

I know full well that there are people with "spectrum" diagnoses who struggle a lot more than I do to be understood, or to deal with academics, or to perform "daily living" tasks.

I also know that there are people with "spectrum" diagnoses who drive, and who have PhDs, and who have a better sense of danger than I do.

And yet...I don't sit around getting annoyed at those folks and yelling about how they're "taking away" something from me, regardless of whether they can do more or fewer "standard" things than I can, at any given time.

Because they're not.

They have their own struggles, as well as their own triumphs, and the reality of what they've achieved (by standard measures) does not negate the fact that they might need non-standard forms of support in some areas.

Nor does extreme struggle in one or more areas negate the potential for capacity in other areas.

Disability is not a generalized lack of all ability, and I find it obnoxious and bizarre that autism in particular seems to be relegated to the "can't do ANYTHING" box so much of the time.

Which is a silly box to begin with -- I mean really, would you figure that if a blind person happened to (for instance) own a home or play a musical instrument that they weren't really blind? Pretty much everyone can do some things -- disabled people just have our can-dos and can't-dos in unexpected (per our culture) places.

So please, if you're tempted to say "but you can do [thing]! how dare you call yourself autistic/disabled!", just...don't. Because that would be ignorant, and would not actually help even a tiny bit to get better services for, say, non-verbal preschoolers or "severely impaired" adults.

Finally, I guess I would like to say that I think autism, and disability at large for that matter, should be a broad category**, sort of like how the designator "bird" can refer to both, say, penguins and hummingbirds. Calling a penguin a bird doesn't even begin to invalidate the reality of hummingbirds, after all.

* I may give the names of these groups/agencies in the future, especially so I can recommend them if they actually end up helping me get a job! But for now I am just referring generically to them, as I don't want to make this discussion about specific firms or service providers.

** Within reason, and with respect to good scientific/ethical practice. E.g., I don't think it makes any sense at all to call, say, gastrointestinal issues and food allergies "autism" (particularly when one is promoting the use of autistic kids as experimental subjects for any number of bizarre supplement regimens). I mean, good grief, one of my cats gets what I've come to term "poopfetti" (based on what I find in the litterbox afterward) whenever he eats anything containing corn...and I'm not about to go around calling that (corn intolerance + poopfetti) "autism", even though Brodie does like playing with string...


Amanda said...

One thing I find odd about the "can't do anything" crowd is purely factual: Being diagnosed autistic currently requires the ability to do things. Many people end up not diagnosed at all, or only as having "traits", because they are too severely impaired in other areas to be able to do everything required for an autism diagnosis.

The people who make a stink about resenting autistic people who can do certain things, piss me off. Because attitudes like theirs contribute to the deaths of autistic people on a regular basis. And nothing can justify that cost.

AnneC said...

Amanda wrote:

Being diagnosed autistic currently requires the ability to do things. Many people end up not diagnosed at all, or only as having "traits", because they are too severely impaired in other areas to be able to do everything required for an autism diagnosis.

Oh yeah, quite true. And, looking back at Kanner's original paper (not that that was the first-ever observation of autistics but still) it appears to me that the *main* thing Kanner noted was the presence of unexpected ability/disability combinations. NOT just a global lack of ability.

(And I honestly don't think anyone alive truly has NO ability to do ANYTHING, but there are a lot of abilities that either go un-noticed or aren't valued as much as others, or that people don't even bother looking for because they assume "this kind of person has no abilities".

Which is all sorts of screwed up, of course, but it's hard to even bring that kind of thing up without people assuming you're "sentimentalizing", which reminds me of how it's hard to note abilities in cats without being accused of "anthropomorphizing". When both sentimentalizing and anthropomorphizing do occur, but they look very different from just pointing out an ability or some other thing that might usually go overlooked about someone.)

The people who make a stink about resenting autistic people who can do certain things, piss me off. Because attitudes like theirs contribute to the deaths of autistic people on a regular basis. And nothing can justify that cost.

Yeah that pisses me off loads as well.

It almost feels like there are "autism sentries" or something lurking just out of sight all the time, ready to jump out and "catch" autistic people displaying some or another ability. At which point they will (a) deny the person support (even if the support they ARE receiving is a huge reason they can do [thing] in the first place, and (b) accuse the autistic person of bad faith or dishonesty or something.

And both of those things can contribute to, as you mention, the death of autistic people (and if not that, to completely needless struggle and harm).

William B Swift said...

I was never diagnosed, but in my general reading I realized I fit the description of a high functioning autistic in the summer of 2003. Reading about it, even though I have never told anyone, has really helped me with some of my problems that I had never understood at all before that.

I am now 48 and still cannot do some things dealing with other people - I am especially bad at looking for work, since approaching people I don't already know is my biggest single problem.

Fortunately, I have relatively minor sensory issues; my skin is sensitive so I normally wear only light slacks and a T-shirt, and I have problems with strong odors; neither of which cause me too much problem at work (when I can find it).

Stephanie said...

Anne C.,

I'm studying business right now and the more I learn about the human resources aspect of the business world, the more completely unprepared I find them for the disabilities population in general and the autistic population in particular. The classes I'm taking are fairly progressive, but they don't even begin to address the complexity of these issues or prepare business professionals to handle their inevitable diverse workforce.

It's definitely an area in need of much, much improvement. Posts like this just reiterate my determination to address head-on, first in school and then after school as a writing/business professional.

unashamed said...

I know I'm commenting somewhat late on this but it was an exceedingly relevant post for my current situation. I currently lost my job and thankfully I do have, and feel ok with using, my local disability services.

And I am sick and tired of people assuming because I'm good at one thing (school, I'm a very good student) that I'm good at things I struggle with (employment, driving, picking up on non-verbal cues) and if I'm not it's because I'm not trying hard enough or being deliberately ignorant of certain things. I wish less time was spent on 'cures' and such and more time was spent on educating people about ASDs, with input by actual autistic people.

Anne Corwin said...

unashamed: No problem on the "late" commenting, people can feel free to comment on posts from 2007 if they want to! I just have comment moderation turned on for posts over 60 days old because it helps cut down on spam.

Anyway, though, good luck on the job front (or finding other means to survive, if you need to). I know exactly what you mean re. people assuming that being skilled in one area means you can't have valid disabilities in other areas. That makes no sense to me and yet I run into it (or forms of it) all the time.

Right now I myself am still looking for work, and in the meantime volunteering, and wishing there was some way to have a "real" job that was LIKE volunteering in terms of its flexibility and such. I also wish there were more part-time job options because I got seriously burned out at my last job even though I "only" worked normal 40 hour weeks for the most part.

Francis said...

I'm finding myself in a relatively similar situation, since I moved to Portland around the same time, after finishing an IT position that I had obtained right after school.

I had saved up some money that I had considered was sufficient to survive until employment. I assumed that with the recent experience, the excellent references, in addition to the many industry-standard certifications I had obtained, that I would be able to more-easily get something lined-up.

Unfortunately, ~3.5 months later, with dwindling-finances, and many unsuccessful interviews, I'm just now beginning to realize that I seemingly have many Asperger-related personality-traits and thought-patterns that may be detrimental in my ability to interview. I'm finding the interviews are bad-enough that they are generally not even attempting to follow-up on the references, to learn that I'm actually good at what I do; and I can't exactly blame them.

I recently completed the AQ exam with a score that suggests there is high-probability of diagnosis. Though, I have no official-diagnosis to attempt to get related-services.

So, I have also been attempting to get any service-sector job, just to survive, only to be confronted with extensive online job-applications complete with personality-tests. However, after following-up, I'm finding that many companies use the personality-tests to pre-screen people to deny them interviews.

I have noticed, however, many of the questions are very similar questions that are found in the AQ; and they may be inadvertently pre-screening out AS personality-traits.

One such company actually refused to even attempt to interview until I pass the psych-test to their liking; recommending that I retake the test if I wanted an interview. I thought this was quite humorous, as they are essentially recommending that I lie to convince them my lie is the truth, even though they know I'd likely be lying if I retake it with different answers.

Upon further research, anecdotal-evidence suggests many people claiming to reach this bottleneck until they appropriately answer each question with mostly strongly-agree and/or strongly-disagree because it is purported that the exam assumes middle-answers do not metaphorically represent a strong enough personality to the company's liking.

In my mind, humans who think more deeply are usually not satisfied with extremist-answers, because other ideas and/or scenarios can often be imagined that suggest answers may fall somewhere in the middle. If that's true, essentially the company is either looking to hire overly-friendly people who don't think too deeply, or people who lie through their teeth to get what they want.

As much as I'm finding this humorously ridiculous, I'm also beginning to contemplate homelessness-services as a temporary measure. Which is a shame, because IT employment was only a natural-talent back-up plan to pay off previous college-debts in order to reapply myself towards regenerative-medicine and/or nanofabrication purposes.