In defense of the sanctimonious women's studies set || First feminist blog on the internet

Aware of what exactly?

Cross-posted at Zero at the Bone and FWD/Forward.

Well, it’s Disability Awareness Month in Indiana, USA. Sound Bend, IN, network WSBT are raising awareness with a story about Sarah Schelstraete, who has Down Syndrome. It’s called Sarah’s Story: Hard at work despite disabilities. One thousand points if you can anticipate from the title what my major problem with the article was.

Now, impairments can make particular kinds of work, or work at all, difficult for people with disabilities, particularly when accommodations – be they ramps or particular lighting or a chair or whatever – are not provided. Leaving aside any accommodations Ms Schelstraete might utilise (it’s irrelevant and really none of our business) there’s no indication as to what impact her impairment might have that would make it hard for her to work at her job as the article title suggests. In fact, the article doesn’t tell us what her job actually is, but moving right along. Now, I’m not saying she definitely doesn’t have challenges related to her impairment, but rather that I have a problem with a particular narrative that this article taps into. This is a narrative that erases Ms Schelstraete’s individual situation, whatever that might be, in favour of conveying disability as something the poor dears must overcome! in their tear-inducing (to abled people) efforts! to live a normal life! which includes paid work!

Perhaps it is that push to gloss everything over that skews the narrative here, but let’s take a gander at the actual information the article provides. Ms Schelstraete is clearly a ‘dependable employee,’ as her supervisor Donna Martis says. She does her job well; interviewees are enthused about her being good at her job. There is not really a need, it would seem, to say that she is doing a good job in spite of her being disabled. She is good at her job. And she is disabled. Just like she is good at her job and a woman, good at her job and a daughter, good at her job and a resident of Indiana, good at her job and, I don’t know, maybe she likes detective shows or cupcakes or whatever. But time and again when disabled people are featured in the media, there’s a kind of shock that “those people” could achieve anything of worth – worth defined according to ableist standards around paid work, of course.

As such, I have a problem with wording like this in the article:

‘Martis said Sarah is a valuable employee who knows how to do her work, and requires little supervision.’

Or how about this?

‘Like any hard-working employee, Sarah knows one big benefit of having a job is making money. She often uses her paycheck to buy DVDs and CDs.’

Yep, just like everybody else – yet her competence must be uniquely examined and confirmed by all these people, despite her having been employed by the same laboratories for seventeen years. This is yet another example of the media trope in which PWD are achieving! through! the hardship! Would you like to know what a hardship is? For many PWD, sometimes more than our impairments themselves? Putting up with that condescending bullshit and fighting to be approached as actual people who should be approached with respect. Because handing out “well done!” stickers has nowhere near of the same value as does being treated like a person with things to offer.

These kinds of awareness-raising stories do little more than give abled readers/viewers/listeners a lift, a feel good story they can tuck away out of mind when they’re done. It’s easier for PWD to be a one-dimensional story, those people put there to light up abled people’s worlds with inspiration, prompting a whispered gratefulness that they’re not one of them. How about we raise some awareness of the social oppression attached to being disabled? Awareness ought to be raised about how many disabled people are out of work because, as Ms Schelstraete’s employment consultant Stacey Simcox says, many ‘don’t give someone the chance because they already have the mindset that they’re not going to be able to do the job even with the support’. About how disabled people so often are treated as though they’re being done a favour by being employed at all. About how work can be a struggle or impossible because of workplace bullying. Because of refusal to provide decent wages. Because employers won’t grant equitable working conditions or accommodations.

And let’s raise awareness about the valuation of work. There’s a nasty thread that runs through these kind of stories that holds disabled people to be societal leeches, a drain on resources. This kind of thinking defines human worth in terms of money, as though people are only good for how much money they contribute and how little they take from welfare or healthcare programs and such. It’s the kind of argument used against poor people who need that assistance, it’s the kind of argument that has led to women’s unpaid work in the home being so devalued. It’s thinking that tries to shame those who utilise thoroughly deserved government assistance, as though it doesn’t exist for a reason.

I am continually astounded by negative reinforcement of difference, but barely ever really surprised. You’d think efforts to raise awareness would require being aware.


25 thoughts on Aware of what exactly?

  1. I’ve run into that sentiment in myself, applied to myself. I don’t bring in a reliable income stream personally, and have been personally appalled at the sheer difficulty I have in saying, “We can’t go out to dinner, that fifty dollars has to go for my medication.” My instinctive reaction is “he wants to go out, he earned the money, he works hard, what the hell do you do, keep house and sit on the computer and sleep, you can handle a little pain. It won’t kill you to be without it….” et cetera. Which makes compliance and management hard for me, but I don’t know that there’s any good way to resolve it except the old-fashioned ruthless owning up to what one is thinking and watching oneself for negative processes.

  2. I always find “_____ Awareness Months” to be sort of offputting. As you point out in this post, I feel like they tend to focus on, well, things that don’t need to be focused on. Less “these are things people with disabilities ACTUALLY NEED” and more “PWD are Brave And Inspiring! And we Normal Folks ™ can learn so much from them! Because they are Brave and Inspiring!”

    Like…not ideal.

  3. With some trepidation, let me suggest that the common understanding of the phrase “hard at work” simply means that one is working hard, whether disabled or not.

  4. With some trepidation, let me suggest that the common understanding of the phrase “hard at work” simply means that one is working hard, whether disabled or not.

    With little trepidation, let me suggest that your ability to invoke a “common understanding” is tied into the context of your experience the the privilege that comes with being part of the common (read: dominant) group. “Hard at work” doesn’t mean the same thing when an able person is talking about another able person as it means when an able person is talking about a disabled person just as the N word coming out of a white person’s mouth means a very different thing then when it comes out of a black person’s mouth.

    Context matters.

  5. Jesus B Ochoa:

    “let me suggest that the common understanding of the phrase “hard at work” simply means that one is working hard, whether disabled or not.”

    Really? Do you think most abled folk would read me as being “hard at work” when I’m sitting having dinner? Chatting with a friend on the phone? Browsing for library books? Lying down reading with my kid?

  6. “Hard at work” doesn’t mean the same thing when an able person is talking about another able person as it means when an able person is talking about a disabled person

    I couldn’t disagree with this more. I tend to think that ultimately these kind of pieces are not about the disabled at all, but instead function as a kind of road map for assessing social valuation. Social valuation, per these propagandizing pieces, is *always* determined through paid work. One’s disabilities or lack thereof are therefore incidental. The disabled are useful caricatures in this genre of propaganda, that’s all.

  7. Also, Jesus, would there be an article about a non-disabled person being hard at work? The implication that’s it’s so amazing that a PWD would be good at a normal job is absurd.

    Am I the only person that found it patronizing that they had to emphasize that she uses her paycheck to buy CDs and movies? Like, oh, it’s not like she needs to spend her money on important things like NORMAL people.

  8. I think this may be specific to the type of disability. While lots of people get the whole “inspirational story of person achieving despite disability!”, it’s generally the people with mental disabilities such as Down’s syndrome or autism who get treated like children in these kind of super-patronizing articles. I don’t think this article would have been written this way if Ms. Schelstraete had been blind or in a wheelchair. Not that that makes it better, but I think that if you campaigned to try to prevent the portrayal of “people with disabilities” in this kind of patronizing light, people would cheerfully improve their tone in discussing blind people and deaf people and people in wheelchairs, but would continue to refer to people with Down’s syndrome in this way… and that in fact there are probably people with disabilities who would see no problem with this article, because it’s always been considered *explicitly* okay by our culture to patronize people with mental disabilities.

    To fight this, specifically, you may need to specifically target not just the patronizing of “people with disabilities”, because the response you’ll get (even if not verbalized) might be something like, “well, yes, but she has Down’s syndrome, so it really is amazing!”, but to specifically target the patronizing of people with mental disabilities. And that’s going to be tough, because the cultural meme of “people with mental disabilities are like children” was itself a progressive counter to “people with mental disabilities are useless and worthless except as figures of amusement” (and, for that matter, no one questions the concept that it’s okay to be patronizing about children in the first place.) A *lot* of people think this attitude is okay, not just “well, it’s regrettable but lots of us think that way deep down,” but explicitly, “it’s good to celebrate the achievements of people with mental disabilities!” and the failure to recognize that this isn’t a celebration at all.

  9. Actually, Alara, I keep track of these sorts of articles for FWD a lot, and they’re not limited to people with intellectual disabilities. The most recent one I wrote about was about a 19 year old who is blind, and I’ve also noticed these trends whenever people who are full-time wheelchair users are profiled.

  10. Yep, inspirational articles happen with pretty much any disability.

    “Look at the amazing mentally ill girl! She goes to college!” or “Look at the blind man, he hikes!”

    It’s patronizing and as Chally said, simply reinforces the idea that a person’s worth is tied up in what work they do and how “normal” they can be.

    It’s bullshit.

  11. I mean, I definitely see the problems here (patronizing tone, etc.) but considering that a good chunk of the audience is going to be responding like “people with disabilities… exist? Do things? Leave the house? Huwhat?” it seems like a necessary kind of baby-steps thing. For a lot of people, just hearing that PWD aren’t some inhuman useless dead weight* is still pretty mind-blowing. For people with a little more info, like the feministe readers, I would expect a more nuanced view (which is what Chally gave us.)

    *getting rid of that whole phrase is obviously a good next step. Humans aren’t “useless” or “dead weight” anyways.

  12. I’m not sure that’s true. Depending on how you count, one in seven Americans lives with some sort of disability–that figure will increase as our age does. In my family, there’s schizophrenia, MS, Alzheimer’s, hearing loss, arthritis, and several long-term mobility-impairing injuries and joint problems. For thirty years or more, my grandfather lived with an ALS-like disease that eventually left him unable to speak or stand upright. Among my close friends, there’s depression, bipolar disorder, schizoaffective disorder, dyslexia, and ADHD. You could also count thyroid problems, eating disorders, HIV, RSIs, and any number of back injuries. I’m probably leaving a great deal out. We all know many people with disabilities, and many of us know someone with Down Syndrome. The problem here isn’t just that she’s being treated as less-than; she’s also being treated as an anomaly. She isn’t. I think the article does a disservice by making her story seem so separate from ours.

  13. Um, I really don’t know about that, Bagelsan. It’s Disability Awareness Month which means PWD conveniently exist once a year, then disappear. Also, as has been emphasized above pieces like this on PWD’s are really quite useful to those that wish to validate tropes of Social Darwinism. If you can’t make $$$, you aren’t worth our time. This isn’t really a message to those of us with disabilities; this is a message to our larger Social Darwinist Us-ian society, i.e. carry your arbitrarily defined, monetarily compensated weight or go jump off a bridge because we don’t need you. It’s not a baby steps thing *at all;* pieces like this are precisely what affirm marginalization.

  14. I think baby steps will actually be achieved when the media stops reacting with some expression of shock that PWD exist, and instead starts doing things like talking seriously about things like barriers to education, housing, or jobs that face many PWD.

  15. Public understanding can only progress in baby steps, but that doesn’t mean they have to be spoon-fed articles with all the consistency of baby food.

    I don’t see there *being* an incremental solution in terms of presentation though–you can’t really help increase public awareness in a positive way if you’re stuck in a narrative like this article tells. I somehow don’t think the author was watering down an enlightened perspective on the (mentally) disabled–she could probably use some awareness herself.

    Thinking about my situation, I can vaguely recall my mom justifying my existence to people on occasion when they learn that I have Becker MD. “Oh yeah, he works and lives on his own”. The more I’ve immersed myself in disability issues, the more things like this irk me in retrospect–not to mention all the internalized (dis)ablism in myself.

    Due to the nature of disability, one can’t even expect people with a given disability to be free of these biases, let alone families, etc. So it’s certainly easy to set the bar too high for media people, but when they don’t meet it that’s just another opportunity to educate them.

  16. People who use wheelchairs are scooters are absolutely infantilised and patronised. One FWD contributor reports a healthcare worker literally babytalking. And this bizarre incident happened to me my very first week of getting around with a scooter.

    There are obviously different inflections to the stories depending on perceived disability types, and different aspects – but people with visible mobility impairments sure don’t get treated like actual grownup people either.

  17. It’s also something that happens a lot outside of media as well. I was at the Fair Day for Mardi Gras in Sydney, and we were sitting near the stand for Sydney’s gay rugby club. They’d set up a kind of participation thing were people could come up and throw the ball at a target. A woman came up who happened to have one prosthetic leg. She got the ball straight through the target. The immediate response from the rugby reps? “She’s throwing the ball AND SHE’S ONLY GOT ONE LEG”. So yeah, these inspirational narratives happen all the time, for all kinds of disabled people, and often have very little to do with the actual realities of the impairments people experience.

  18. Good point, Li. People adore making assumptions about what people can and can’t do. Often it isn’t even based on an even cursory understanding of the person’s disability, or unfounded assumptions in general. It isn’t that hard to actually listen to people instead of assuming.

  19. I think a big problem is that the problems faced by people with disabilities seem invisible. Not just economic, but social problems as well. Especially when the disabilty is invisible.

    My best friend told me about a friend of hers that I will possibly meet when I go visit her. This girl (don’t want to post name) has a disability that impedes her ability to function in social settings because she doesn’t have the ability to read or understand emotion. (I think she may have apergers, but my best friend wasn’t sure) So she is awkward in social settings, not because of shyness or anxiety, but because she can’t read social cues.

    My best friend wanted me to know in advance because alot of people meet her friend and assume that she is rude or standoffish, or whatever, when the problem is that she really doesn’t understand. And since you can’t see her disability, it makes things very hard for her.

    I hesitate to say that we need more awareness, because I don’t know if everyone wants awareness. But (and I might be wrong) wasn’t it Brooke Shields and the awareness she created what helped remove the stigma of PPD? So couldn’t bringing awareness of the reality of living with various diabilities?

    Also, (I realize this might seem like a silly question) for these discussions, do you distinguish between different disabilities? Like mental disorders, hearing impaired, blind, autism? Or does PWD include all of them?

  20. ‘So couldn’t bringing awareness of the reality of living with various diabilities?’

    Certainly. That’s not what articles like the one above one do, and that’s what they ought to do.

    ‘Also, (I realize this might seem like a silly question) for these discussions, do you distinguish between different disabilities? Like mental disorders, hearing impaired, blind, autism? Or does PWD include all of them?’

    PWD does refer to all people with disabilities, and lots of us find it important to have that grouping, that community, in a similar way as non-white people might be grouped under, say, non-white or people of colour, which function as umbrellas for a range of racial identities. There are times to refer to the broader group, and there are times to refer to specific disabilities, I guess! I’m not quite sure what you’re getting at but hope that answers your question.

  21. Thanks Chally, that does help.
    I agree that the article above doesn’t bring genuine awareness. I meant awareness in the the economic and social disadvantages that PWD are facing.
    Also, and I don’t know if this makes sense, but awareness of what some of these disabilities are. Like the girl I wrote about above, who gets treated in a hostile manner sometimes, because people don’t understand that she is disabled. And some of the people that do have taken advantage of her. (I know there are so many disabilities, and I’m not dismissing any of them by focusing on this story)

    And under our free-market system here in the U.S, where human value is judged by assets and wealth, people will continue to see disabled people as draining society. Which is just one of the many reasons why we need a new sysetm 🙁

  22. S.L., the problem with most “awareness” campaigns about particular disabilities as currently constructed is that they tend to evoke pity, suggest that having a disability is a fate worse than death, and are usually produced by non-disabled people. There are sometimes exceptions, but generally this is the pattern. These kinds of “awareness” campaigns do not promote respect for people with disabilities. And since you mentioned autism (including Asperger’s), it’s important to mention that “autism awareness” campaigns are usually among the very worst of these. Many autistic people (including myself) object very strongly to what passes for “autism awareness campaigns” and are currently bracing ourselves for Autism Awareness Month in April. For a month we get inundated with constant media telling us that we are burdens on our families and society, monsters, etc. And will any of this dehumanizing treatment result in our being better treated by society and individual people? Highly doubtful–I suspect that most “autism awareness” media actually makes our stigmatization worse. (Again, there are exceptions, notably in the UK.)

    Equality for PWD will not be achieved through “awareness.”

  23. Sarah, I agree. Policy is really were we need the change. I think that if we can at least convince policy makers, we have chance of getting through to the general public.

    Something as simple as not imprisoning us in institutions seems like it would raise a lot more awareness than pity inducing commercials.

  24. Many autistic people (including myself) object very strongly to what passes for “autism awareness campaigns” and are currently bracing ourselves for Autism Awareness Month in April. For a month we get inundated with constant media telling us that we are burdens on our families and society, monsters, etc.

    Wow, I will be honest: I wasn’t aware of this. The little I do know about autism I know from some volunteer work at a special needs school and from my mom. (My mom used to work at a special needs school and my aunt does now.)

    It’s really disappointing to me that PWD feel that way about themselves because of these awareness campaigns. That only makes things worse. (I’m disappointed in the campaigns not the people hurt by them)

    BTW Sarah I hopped over to your blog to do more reading.

Comments are currently closed.