Notes On Employment

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Lego figurine with yellow skin wearing a black suit and tie, sitting in a black Lego wheelchair

I got preachy with someone on Twitter yesterday over how disabled people *should* approach the question of employment, and particularly how to handle the flawed programs that are supposed to help us find jobs and get careers off the ground.

I didn't mean be patronizing with that particular Twitter user, who was really just trying to express her anxieties about getting into an employment program. I think I was really venting my long-term frustrations about how vocational rehabilitation and other employment programs work and communicate with their customers. Over the years, I have talked with so many disabled people who deal with employment services in unhealthy ways … suffused with fear, anger, timidity, duress, and a sense of failure even before starting. While we all probably have some personal work to do to adjust our attitudes, I mainly blame the service providers, who mean well, but don’t seem to get how complicated employment is for disabled people. There’s so much more to the equation than just job skills and motivation alone.

So I figure now might be a good time for another “brain dump,” this time on how I see the massive, perplexing issue of employment and people with disabilities. I’m not a rehabilitation counselor. I’m not an expert on employment. Employment wasn’t even my main area when I worked in Independent Living. But I’ve seen and heard a lot of things, and I believe a big part of the problem is that our efforts to address the huge employment gap for disabled people are incredibly complex, yet we rarely sit down and try to sort it all out. Instead, everyone just forges ahead, assuming that their view of the problem is THE view of the problem.

Here’s what I’ve got … for what it’s worth:

Different strategies for increasing disability employment seem to operate in isolation:

- Make disabled people more employable, which presumes that the main deficits are in the disabled people themselves … poor education, lack of job skills and work experience, underdeveloped social skills, and yes, actual disabilities that make everyday work harder.

- Make employers more accommodating and less discriminatory, which presumes that most of the disabled applicants are fine, and are mainly held back by employers’ ableism, their unexamined assumptions about the imagined risk of hiring disabled people.

- Change the incentives so as to encourage employment, which presumes that the problem is mainly structural, not personal. Employers might be willing, and disabled people might be ready, but various benefits and support systems unintentionally hold people back because the systems are poorly designed.

There also seem to be four distinct groups of unemployed disabled people:

- Fully qualified to work, with the proper training and credentials, but can't get hired or keep losing jobs.

- Under-qualified and lacking workplace skills & habits, often among people who have had disabilities all of their lives and didn’t start being prepared for work until much later in life when expectations finally began to change.

- Have certain disabilities that really do make traditional work extremely hard to find and very taxing, even with support and accommodations. This may include people with chronic illnesses, disabilities that can change radically over months and years, and people with mental illnesses that wax and wane.

- Available work is not secure or lucrative enough to justify risking loss of benefits and support services, which goes back to the disincentives problem. These disabled people want to work, at least to some extent, but it just doesn’t seem to make sense financially and practically for them to dive fully into full-time work or long-term careers.

Discrimination really is a factor for all disabled people looking for work … discrimination that boils down to two big factors:

- On the whole, for any given position, employers would rather hire someone who isn't disabled.

- Employers would rather have "low maintenance" workers than deal with workers who might need accommodations, or for sure will need accommodations.

Aside from being unjust and illegal under Title I of the Americans with Disabilities Act, the problem with both of these factors is that the negatives are generally very exaggerated. Objective evidence suggests that in general, disabled people are good workers who are less hard to work with than most employers imagine them to be.

Not for nothing, but non-disabled workers have a host of other problems that give employers headaches … problems like absenteeism, poor work habits, and garden-variety toxic personalities. In comparison, disability is often less of a problem for employers than other problems that aren't related to disability.

Hovering over all of this are factors we pretty much all know in the abstract, but that are hard to dismantle:

- Many disabled people presumed to be unable to work actually can.

- Many disabled people make rational decisions not to work, or to work less.

- Disability alone rarely is the only factor determining whether a person can work. Some unemployed disabled people also have poor education, the wrong job skills for the market, and chaotic personal lives that make it hard to be reliable, much less top-notch employees employers really want to hire.

Possible answers:

Make it easier to pursue employment without shaming or punishing those who don't work. Don’t manipulate benefits and support systems to try and force more disabled people into work, reform them to make it an easier, clearer choice.

Stop assuming certain disabilities make it impossible to work, or that other disabilities are no impediment to working. Step back from old formulations about certain disabled people being ready for work, and others not, just by virtue of what kind of disabilities they have or how “severe” they are perceived to be. It’s entirely possible that your average quadriplegic is more ready for work than a person with chronic pain.

We should expand the definition of what we call "work," and of what kind of work can earn a disabled person money. If a bunch of currently unemployed disabled people were able to work part time while still collecting all of their benefits, the situation overall would be much better for everyone.

Everyone needs to acknowledge that different people have different problems. Some are mainly held back by discrimination, while others really aren't qualified, yet. No one formulas explains why any given disabled person isn’t working at the moment, which is also another reason we shouldn’t judge them, or for that matter not judge them for not working.

Some of us do need to do work on ourselves, but not everyone. And sometimes the perfect applicant still won't be hired because of discriminatory perceptions. Some people need job training. Some need to work on their people skills. Some need help outwitting, circumventing, and confronting discrimination.

Two closing thoughts:

1. The person I got preachy with on Twitter yesterday said that disabled people in our society are judged based on whether or not they work. She's right. There really is a philosophical problem with how we deal with disability and the moral dimensions of work, productivity, and worth. This is not only morally wrong, but I also don't think banging on about the work ethic and shaming people for needing benefits helps disabled people find work one iota.

2. If we could take economic necessity out of the equation, through iron-clad benefits and no income or asset caps, would more disabled people work for pay, or fewer? I think it's an experiment worth trying. So, you know ...

#CripTheVote!

Throwback Thursday

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Picture of the time machine from the film "TIme Machine"

One year ago in Disability Thinking: “Two Ways To Improve Disability Journalism”

These suggestions hold up pretty well, especially the second one. Journalists of all kinds absolutely need to stop doing stories about disability issues and disabled people without in some way quoting or fairly describing the views of disabled people. And the key is realizing that talking to parents and professionals doesn't count. Their voices and perspectives are important, but they are not the same as the voices and perspectives of disabled people.

Two years ago in Disability Thinking: “3 Kinds Of Ableism”

It is probably time for me to revisit what Ableism means. I've been thinking lately that one of the problems with "ableism" and "ableist" as words is that like "racism" and "racists, they have become insults instead of descriptions. In the case of ableism, I think this is partly because when people think of "ableism" they picture a caricature that looks and sounds like a middle school bully ... a horrid, scowling creep who shouts insults at the boy in a wheelchair during lunch and laughs at their girl who has trouble speaking easily in class. Ableism is a lot more varied and complex than that. Otherwise kind, decent people do ableist things all the time. They overlook ableism every day. And they have ideas about disability that are basically ableist, but they don't recognize them as such. More about this soon, I think.

#CripTheVote: Notes On “Crip”

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#CripTheVote with logo, a voting box with four disability symbols on the front

While #CripTheVote has gotten a lot of disabled people excited about participating in this year’s elections, a few folks have questioned our decision to make “crip” a key component of the hashtag. Since the complaints and concerns have been mostly expressed carefully, thoughtfully, and with respect, we feel it makes sense to explain ourselves a bit further, for those who might be interested.

Here is our thinking:

- Selective use of “crip” or “crippled” by people with disabilities is a conscious act of empowerment through “reclaiming” a former slur as a badge of pride. “Selected use” means we don’t use it all the time, in every situation. We exercise judgment in when and where it’s appropriate to use.

- “Crip” and “cripple” are also used ironically, to convey a bit of edginess, humor, and confidence, from a community that people tend to assume will be sad, bitter, and boring.

- Disabled people who identify with “crip” or “cripple,” generally share a strong sense of disability pride and deep involvement in disability activism and culture. We know what the social model of disability is, we are familiar with “person first” language, and we take pride in our disability identities. Calling ourselves “cripples” isn’t a sign of self-hatred or ignorance of disability history … quite the contrary.  

- “Crip” and “cripple” have been used this way by at least some disability activists for decades. It’s not a particularly new practice. It has, however, grown to be more inclusive, as the disability rights movement itself has gradually become more inclusive, both of people with all kinds of disabilities, and of people who have other important identities.

- “Cripple” as an actual label or insult is not just “politically incorrect,” it is archaic. It is a term from a bygone era, largely out of use even by ableists. That is not true of all negative disability terms. For instance, “handicapped” and “retarded” are both used much more often, and are therefore more risky to play around with than “cripple.” That’s why you won’t find many disability activists and proud disabled people using “handicapped” or “retarded” either as reclaimed terms or ironically.

- We chose to use #CripTheVote because it sounded more interesting, hard-edged, and likely to spark interest than safer, more “accurate” terms. It’s the difference between saying, “Rock The Vote!” and saying “Young People Really Should Register And Vote.”

- All that said, using “Crip” or “Cripple” this way isn’t to everyone’s taste. That’s fine. Some people have painful personal histories with the word. Some people despise irony and don’t like messing around with language. Some people feel it’s just too risky.

-We are not speaking for everyone, especially the disability community. We believe there is room for multiple hashtags and conversations--there’s something for everyone.

- However, context does matter, and if you read through the tweets that have come out of the #CripTheVote hashtag, you will see that is has inspired the very opposite of ignorance, stigma, or medical model paternalism.

- For a deeper look into the issue, read Crip Theory, from Wright State University.

Weekly Reading List

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Illustration of two rows of multicolored books

Good stuff from last week's reading ...

Disabled people 'only an afterthought', Lords report says
BBC - March 24, 2016

This is a really profound statement, and I agree with it. The main reason things aren't better for disabled people, at least in modern, "liberal democracies," is that our needs and issues never get enough attention. We have some decent laws. We know how to make things accessible. Most people don't really hate disabled people, at least not consciously. The problem is that almost nobody cares enough for long enough to turn abstract ideas, feelings, and the skeletons of policy into everyday practice. We're not hated, by and large. We're just low priority, and that is bad enough.

The Job Market Is Pulling In People Who Didn’t Want To Work Before
Ben Casselman, FiveThirtyEight.com - March 25, 2016

The article doesn't specifically mention disabled people entering or re-entering the workforce, and employment numbers for disabled people are still dismal. It's a good sign, though, that various policy changes and economic factors may be slowly making it easier for people to work "a little bit." It's not the answer for all of us, and plenty of us can and should be working full time. However, part-time work can be an important bridge to the world of work for people with disabilities.

If Your Home Is Your Castle, Is Your Welcome Mat A Moat?
Nestor Melnyk, Jason's Connection - October 31, 2013

It's been years since I heard about "visitability" laws. I wish we had included it in the #CripTheVote Disablity Issues Survey. Requiring basic accessibility in all housing, both public and private, would have a massive positive effect on physically disabled people, including many senior citizens who become disabled later in life. The effects of such laws passed now would probably reach their peak just in time for massive cohorts of aging Americans needing houses and apartments they can live in, with level entrances, wider doorways, and safer bathrooms.

How to Support an Autistic Person During Autism Awareness Month
WikiHow, link provided by the Autistic Self Advocacy Network

This is a good introduction to why autistic self advocates are against "Autism Speaks." It doesn't get into the weeds and specific incidents, but it lays out the differences positively, in ways that the uninitiated can easily understand. I am not autistic, but I can also see parallels in how other disability constituencies relate to certain charities that purport to serve us, may even want to serve us, but end up doing us far more damage than good.

The 30 Top Thinkers Under 30: Eddie Ndopu
Avital Andrews, Pacific Standard - March 26, 2016

This isn't "inspiration porn," it's just plain inspirational. Maybe "admirable" is a better term, or "role model," or "awesome." Shared by Lydia X. Z Brown (@autistichoya).

Growth Attenuation

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Photo of a man with his forehead planted onto an open laptop computer's keyboard

Here is the article that started it all:

Should Parents of Children With Severe Disabilities Be Allowed to Stop Their Growth?
Genevieve Field, New York Times Magazine - March 22, 2016

Here are two great responses to it, in tweet form:

No, @NYTmag, #AbleistViolence is NOT ok!
Alice Wong, Storify - March 23, 2016

Language, Framing, and Perspective in Reporting on Disability
Kayla Whaley, Storify - March 23, 2016

This New York Times Magazine article has occupied my thoughts for most of the last few days. It purports to examine the ethics of parents of significantly disabled children choosing a medical "treatment" that stops their growth, both in size and in sexual maturity. In effect, it renders them physically permanent children. If there are people who don't immediately get why this is wrong and extremely creepy, nothing I say is going to make any difference. Plus, others have done a great job of responding already.

Still, I've got this blog, so ...

It begins and ends with consent. As described, this "treatment" is only used on children who are intellectually disabled and don't communicate. In other words, they can't give consent to such drastic procedures, both because of their age and, more significantly, their disability.

Anticipating an objection: It's not the same as parents giving consent for a child to have life-saving heart surgery. This "treatment" is in no way necessary to a disabled child's better health, and is not even close to being "life saving." At best it is exactly the kind of optional but consequential procedure that would normally absolutely require informed consent ... but in these cases, the children can't give consent and aren't even asked.

In fact, it's hard to imagine parents daring to ask a fully conscious, communicating child whether they would agree to have their growth stopped and adulthood cancelled, to make them easier to care for. But why not? If it's all about physical convenience, what difference does their intellect make? I'd never say never, but I think even supporters of this procedure would shudder to look an 8 year old son or daughter in the eye and say, "Look, we really think it's for the best if you just don't grow up. You'll be a lot easier to take care of if you stay small and never experience puberty. Okay?" It's too horrific to contemplate, but it's the only acceptable situation I can think of in which to discuss this sort of thing. The only reason any parents even consider this is that their children's cognitive and communication disabilities spare parents the obligation of asking them. But that's exactly why it's unthinkable.

Let's look at this another way. Here you have what are reputed to be the most "severely" disabled children living. Their parents decide that to make caring for them easier, they're going to mess with the one thing they can still do more or less like other people, grow and develop into adults, in body if not entirely in intellect or conventional maturity. They've got one thing that makes them like other people, and you take that away from them, too.

A few more thoughts:

How much help is this "treatment" anyway? It makes a child easier to move around, but that seems like a pretty small benefit to get for radically and permanently altering your child's body chemistry and development. It would be less traumatic and just as useful to bolt sturdy grab handles onto their sides, so they can be carried like a briefcase.

Hysterectomies too? Really? Do we detect a bit of weird sexism thrown into the mix? Are they castrating boys as well? I guess as long as you're tinkering, you might as well mess around with their sexuality, too, because monthly periods are unpleasant and erections are ... what? awkward and embarrassing?

And what's the deal with calling these kids "Pillow Angels?" Nobody explicitly says they do this thing specifically in order to keep their son or daughter a perpetually cuddly child. But, with all the sentimentalizing and infantilizing language they use, it seems like in at least some families there are bizarre ideas, obsessions, and mythologies of childhood in play. Maybe the parents are just freaked out at the thought of providing all this intimate care to a big, hairy guy or a fully developed woman's body. Nothing cute or cuddly about that, right?

Why don't these parents, doctors, and "ethicists" fight this hard and tenaciously for better support services, for families and for adults with significant disabilities? I get that activism doesn't come naturally to everyone, but is turning your child into a permanent baby doll really better than advocating for better funding or working to pass better long term care legislation? Are we really going to say that massive body alteration is an acceptable substitute for decent disability services and social justice?

The most important thing missing from the New York Times Magazine article is that for disabled people it is a personal attack on our personhood, even when it's not happening to us personally. This point is critical, because counter-critics will say that vocal disability activists can't speak to the issue because our disabilities aren't like these kids' disabilities. First of all, there are many of us who are as physically disabled as them, who can really speak to this quite directly. Plus, we have all experienced at some point in our lives the horror of feeling that control our lives and bodies has been deliberately taken out of our hands, by others, precisely because we are disabled. And the "others" doing the taking are almost always either experts with medical degrees that outrank us, or loved ones who, after all, only want the best for us. You simply can't discuss this dispassionately and insist it's purely practical or an interesting head-scratching moral dilemma. The emotional, even existential component is essential.

About all we get in the article is that disability activists are shaming these parents on social media. So instead of having a valid point of view based on personal experience, we are just another gang of cranky online social justice warriors who are making parents feel bad.

We are talking here about using unnecessary medical procedures to make social policy, with dire and to some extent unknown consequences for real human beings ... without their consent.

Yes, it all comes back to consent. Every other argument is moot. You can't do this to people ... any people ... without their informed consent. If you can't get consent from the person most affected, then don't do it. End of discussion.

Unless, of course, we decide that severely disabled kids who don't communicate aren't actually people. Maybe they're something else? If that's the case, then it's all good! Is that, in fact, what we're saying? Is that what we want?

On a more personal note:

I don't get truly angry much. When I read about some injustice or bad policy affecting disabled people, my anger usually dissipates pretty fast as I think about all the arguments and counterarguments, put myself in other peoples' shoes, play Devil's Advocate, etc. I intellectualize things, probably too much. In this case, I started out kind of bemused, ("Wait, what???), and the more I thought about it the angrier I got. That means something.

Disability Blogger Link-Up

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Close up photo of a grey computer keyboard with a red wheelchair symbol on the center key

We’re back again, with another Disability Blogger Link-Up. Share something recent, something from the past, something you wrote, or a favorite by someone else. It’s all aimed a getting good stuff about disability seen and read.

As always, to make the links easier for visitors to browse, in the “Your name” blank, please type the title of the article you are posting. In the "Your URL" blank, paste the URL address of the item. Like this:

Name = Title of your article.
Your URL = Link to your article.

Then click the "Enter" button. That's it!

This Link-Up will close at Midnight Eastern on Sunday. The next Disability Blogger Link-Up will start Friday, April 8, 2016.