Thursday, April 24, 2014
Disabled People Need Three Things - 3. Agency
"One's agency is one's independent capability or ability to act on one's will.”Wikipedia: Agency (sociology)
Last Friday, I proposed that disabled people really only need three things: Accessibility, Money, and Agency. Leaving aside food, clothing, and shelter, which all people need, Accessibility, Money, and Agency encompass all of the “special” needs of disabled people, of all ages and disabilities. So far, I have covered Accessibility and Money. Today, I conclude with an examination of Agency.
I’ll be honest, I was looking forward most to writing about Agency, because it means a lot to me. But, it’s been the most difficult part of this series to write, because Agency is also something I have only recently begun to understand. I tried six different times to explain what I mean by Agency, and why it is so central that it qualifies as one of the three most important needs people with disabilities have. In the end, I could only come up with a somewhat random list of statements and observations about disabled people and Agency. Hopefully together they will make my meaning clear.
Here we go ...
- Agency encompasses a bundle of internal personality traits and ways we want to be treated by others, including, but not limited to: freedom, dignity, integrity, honesty, autonomy, initiative, self-awareness, sentience, choice, independence, human rights, and respect. None of these concepts quite cover what we’re talking about. Agency is the best term I have found so far that expresses them all together.
- It is tempting to think that Agency comes with or is equivalent to adulthood. Yet, children clearly can have Agency, even if it is less developed than adult Agency. Babies may be good examples of people who have many great qualities, but may not at that stage have Agency.
- Agency is one of the things people disabled later in life miss the most. When they describe how others now treat them differently, and how they feel they have lost something subtle but somehow critical ... what they've lost is Agency. On the other hand, growing up with disabilities can make it that much harder to develop full Agency in the first place.
- When a disabled person says that they aren’t defined by their disability, what they mean is that despite their disability, they have Agency. This also implies that disability itself can take away Agency if you let it. I don’t agree with that, but I understand how many people might think it.
- When you meet a disabled person and ask them questions about their likes, dislikes, goals, and dreams ... and they answer "I don't know" … that is someone who hasn't developed, or has lost Agency. You can see it, too, in youth with disabilities who always look first at their parents before answering any substantive question.
- Lack of agency is always being the object of a sentence, never the subject. It is having things done to us, and rarely doing things for ourselves or for others.
- Agency is one of the reasons so many of us balk at being called “Inspirational”. Even though it is a compliment, it feels like a role we never accepted, an effect we never initiated. When disabled children are habitually called "angels" and "miracles", they become a little less human and a bit more like symbols of virtue, or catalysts in their parents' spiritual lives.
- Agency is not recognized when we try to understand autistic or intellectually disabled people a dozen different ways, and somehow overlook just asking them.
- Disabled characters in books, movies, and TV can tell us a lot about Agency. On "Breaking Bad", Walter White's son Flynn is a likable character with Cerebral Palsy, and one of the supposed motivations for his father's descent into a life of crime. But for most of the series, Flynn lacked true Agency. He gained it to some extent when he finally turned on his father and defended his mother. It was an amazing scene partly because Flynn for the first time demonstrated Agency.
- Agency means being main characters in our own stories, not just a supporting players in someone else's.
- When people automatically doubt our interpretation of our own experiences, when we are assumed to be incapable of properly understanding our own situations, we are robbed of Agency.
- "Nothing about us without us." is all about Agency. So is "The dignity of risk." Being liked and treated kindly helps, but it doesn't
- Not having Agency is the waitress asking, "What does she want to drink?” It is the doctor asking, “When did he start having pain?”
- Agency is what is missing when reporters write news stories about disability without speaking to or quoting disabled people.
- For Agency to be real, we have to exercise it, and others have to acknowledge it. It is a two-way street.
- Having Agency leads to better treatment by others, and more confidence in ourselves to deal with others. It even makes it easier to cope when things are at their worst.
There is probably a lot more that can be said about Agency, and about the other priorities in this series, Accessibility and Money. Please do leave your thoughts in the comments. Maybe in a day or two I’ll try to wrap this series up and figure out if it means anything.
Wednesday, April 23, 2014
Tuesday, April 22, 2014
Disabled People Need Three Things - 2. Money
Last Friday, I proposed that disabled people really only need three things: Accessibility, Money, and Agency. Leaving aside food, clothing, and shelter, which all people need, Accessibility, Money, and Agency encompass all of the “special” needs of disabled people, of all ages and disabilities. Yesterday I explored a broad definition of Accessibility, and what it means for disabled people. Today, it’s all about the Money.
Disability Thinking - March 24, 2014
"Money is the ultimate adaptive technology. A wheelchair can only be useful as a wheelchair. You can't obtain food with a hearing aid. A counseling program won't help a quadriplegic get out of bed in the morning. Money, though, in the right quantity, can be translated into just about anything a person with a disability needs to unlock their potential and make their theoretical independence real.”
It turns out I already blogged about this a little over a year ago. I don’t really have much to add.
Except for this. Imagine a world without money. It sounds sort of idyllic, and it would be, if everyone at the same time they gave up money also all decided they would henceforth be happy to do stuff for others, expecting nothing in return … all the time. Otherwise, the disappearance of money would leave disabled people especially helpless, because we would be entirely dependent on charity and kindness for the help we need to do things that our disabilities prevent us from doing.
Fewer of us than average have the physical ability to grow or hunt our own food. Nor are many of us capable of building our own dwellings, wheelchair accessible or not. Those are just the basics, but many of us need things like sophisticated wheelchairs, hearing aids, ventilators, and other devices that are very hard to produce as artisanal handicrafts. Not to mention those of us who can’t get out of bed, feed ourselves, or wipe our butts without the help of another human being.
The problem, obviously, is that while money is especially empowering for us as disabled people, it is also harder for us to obtain. It probably shouldn’t be. If economics worked like Monopoloy, for instance, where the game starts with the “banker” doling out a set amount of money to all the players, it might be a bit easier, or feasible for us. SSI and other disability-related benefits are gestures in that general direction, but just barely. More of us could probably earn all that we need than typically do, and there are dozens of possible reasons for this. In any case, this is not the place to suggest how disabled people are supposed to get more money. That is another discussion.
My point here is that I sometimes think we spend too much time trying to think up complicated service systems with hundreds of moving parts and barriers to entry, when really, most of us who have disabilities could improve our own lives considerably if we had more money. It wouldn’t solve all of our problems, but more money sure would make the rest of our problems easier to solve.
Tomorrow, I will finish this series with the most hard to describe, but possibly most important thing disabled people need … Agency.
"Shared Abilities" Blog Post
Monday, April 21, 2014
Disabled People Need Three Things - 1. Accessibility
Last Friday, I proposed that disabled people really only need three things: Accessibility, Money, and Agency. Leaving aside food, clothing, and shelter, which all people need, Accessibility, Money, and Agency encompass all of the “special” needs of disabled people, of all ages and disabilities. This week I’ll try to explain what I mean.
First, Accessibility ...
By “Accessibility”, I mean all of the ways in which disabled people are admitted to physical places and social pursuits that we might otherwise be barred from because of our disabilities. We gain access because of deliberate action to change the physical environment and social structures we live in. For example:
- Making buildings, environments, and services of all kinds physically usable by wheelchair users and people with other impairments. This includes businesses, government offices, recreational areas, houses of worship, streets and sidewalks, transportation services, schools, and homes. It is the gradual and eventually complete transformation of every community’s basic infrastructure so that no unnecessary physical barriers keep us out or restrict our choices. It is the practical ability … not just the theoretical freedom … to go anywhere, when we want, with little or no help from others.
- Changing laws, regulations, policies, and practices that have historically kept disabled people from full participation in all kids of pursuits, including employment, political participation, education, and socialization. It involves knocking down bureaucratic barriers like eligibility rules that screen out disabled people, overly restrictive and unnecessary physical requirements, medicalization of non-medical concerns, overprotective systems that put safety above independence, and other policies that sometimes intentionally, sometimes unintentionally limit disabled peoples’ choices and opportunities.
- Access to assistive technology and individual accommodations, which help individuals adapt beyond basic accessibility. This includes mobility devices like wheelchairs and walkers, simple adapted hand tools and utensils, and computers and Internet services that can be used equally well by people any impairments. It also includes all of these adaptive tools being affordable to all, and designed thoughtfully for the maximum convenience of the user.
- Changing popular misconceptions about disability, which tend to create misunderstanding, fear, resentment, and social separation of disabled people by non-disabled people. In a sense, disabled people are at least partially kept out of full social life by how they are received by others. At the most basic level, what we need is for people to appreciate our specific differences and unique needs, while at the same time regarding us as essentially no different as people from those who are not disabled. It means we should neither be ostracized, nor put on a pedestal.
All of these measures, whether physical or social, involve the central idea of Accessibility … of deliberately creating environments that are as welcoming and functional for disabled people as we know how to make them. They all involve positive actions, sometimes expense, and at the very least individual decision and psychological change. As with other kinds of prejudice, it is not enough just to be nice or refrain from being mean. You have to make a pro-active effort to include disabled people, to meet us at least halfway so that our own individual efforts … hard work, risk-taking, and “putting ourselves out there" … can be effective.
Tomorrow, I’ll take a look at Money … something everyone needs, but which is uniquely empowering for disabled people, when we can get it.
Sunday, April 20, 2014
Weekly Wrap-Up
Monday, April 14, 2014
Tuesday, April 15, 2014
Wednesday, April 16, 2014
Thursday, April 17, 2014
Friday, April 18, 2014
Saturday, April 19, 2014
Saturday, April 19, 2014
What Was Pope Francis Doing?
Delia Gallagher, CNN - April 17, 2014
"Those chosen for the special honor included a 16-year-old boy from Cape Verde who was paralyzed in a diving accident last year, a 19-year-old man and a 39-year-old woman diagnosed with cerebral palsy, and two 86-year-olds with mobility problems.”
I know that the sensible, non-obsessive thing to do in situations like this is to compartmentalize and appreciate. Compartmentalize that it’s nice for the Pope to make such a gesture to a group of lowly and disadvantaged people, and set aside the question of why people with these disabilities are housed in a “home for the elderly and disabled”, and not living at home, with their families, or on their own if they choose? And then just appreciate the act of compassion … or is it respect?
Then there is the theological meaning, which is probably more important, but which I am not qualified to say much about. From what I have read, this Pope has often used the foot-washing ritual to buck high-church tradition and show love and respect for socially stigmatized people … like pregnant women in maternity homes, youth in drug rehabilitation, and AIDS patients. In which case choosing to focus on disabled people is significant, possibly a unique way of highlighting and de-stigmatizing them.
This would be a significant if subtle break from another Church tradition of a compassion towards disabled people that tended to further stigmatize and condescend. Think Mother Teresa, whose order wouldn’t install elevators required by local codes in their orphanages because they considered them, a luxury. They would carry disabled patients up and down flights of stairs. For them, the symbolic sacrifice of the giver was the whole point, and the recipients of their acts were little more than bit players in their interpretation of compassion. It’s the classic misunderstanding of compassion as something primarily for the giver, in which the receiver is nothing but an inert vessel.
That’s what I worried was going on with Pope Francis’ foot-washing. It still looks a little bit like that to me, though ultimately I don’t sense that Pope Francis thinks this way. I appreciate the idea of the highest Catholic Priest serving rather than being served.
Wouldn’t it be interesting, though, if one of those disabled people had reciprocated, and washed the Pope’s feet? Or, washed one another’s feet? Not to reinforce the perception that disabled people are humble or subservient, but to underscore that we can be givers as well as receivers.
Scheduling Note
I am going to wait until Monday to post the first of my three-part series of blog posts, Disabled People Need Three Things. I’m thinking of writing something today about Pope Francis washing disabled peoples’ feet. Maybe today, or maybe tomorrow. Anyway, I have been reading the headline about that for a couple of days and I’m really curious what that was about.
Friday, April 18, 2014
Disabled People Need Three Things
I had fun a couple weeks ago writing a three-part series of blog posts on different forms of "Ableism”. So, I have decided to do another series, this time fleshing out another “grand unified theory” of disability. I will argue that disabled people of all kinds only really need three things:
1. Accessibility
2. Money
3. Agency
Over the next three days, I will explain what I mean by each of these. For now I just want to clarify that when I talk about things disabled people need, I don’t count things everyone needs … like food, clothes, and shelter. I’m not talking about curing any diseases or lessening our disabilities through therapies. To me, those are separate concerns. What I am looking it is what people with disabilities uniquely need to live well with their disabilities.
Why am I doing this?
I'm doing it because I think we sometimes get so caught up in specific goals that we lose sight of what we really after. There are thousands of disability-related policies to advocate, hard-won victories to defend, and small, incremental improvements to shoot for. But really, they all relate in some way to these three things ... Accessibility, Money, and Agency. Or, they should relate, and if we are working our asses off for something that doesn't relate, then maybe that's a sign we should reassess what we are doing.
Stay tuned!
Best Article On Assistive Devices
That Crazy Crippled Chick - March 30, 2014
One of the interesting things about “disability pride” is that for people who don’t actually have it, it probably seems like kind of a feeble, made-up attempt to turn lemons into lemonade. I used to think that, myself. I never really felt bad about my disability, but the idea of showing it, embracing it, or celebrating it seemed almost nonsensical to me.
One of the first ways I began to understand a different view was through observing how a lot of disabled people come to see their wheelchairs, crutches, and other assistive devices as more than just tools. I experienced it myself when I used a scooter throughout college and graduate school, and in the same period started using a ventilator at night to help me breathe. I never felt stigmatized by them, and soon I started to feel grateful for them almost like one is grateful to a person. Seeing my scooter or my ventilator after being away from them for a bit made me feel comfort, like I was coming home in a sense.
As I met other disabled people, and got to know some of them online, one thing thing that the happiest, most independent of them had in common was an intimacy and sense of fun about their devices. I don’t know which comes first though. Do you come to embrace and love your wheelchair because you embrace and take pride in your disability identity? Or, does incorporating a wheelchair into your look and personality help you accept and embrace your disability?
This isn’t quite the same discussion “That Crazy Cripple Chick” is having, but what she’s writing about here is closely related, and it is a great starting point for someone who, for whatever reason, can’t seem to view assistive devices with anything but sadness, disappointment, or fear.
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