What I meant by that is, of course, things that make my life with a disability easier.

Disability can introduce certain complications to a life — meaning that in reaching the same destination, a disabled person may have a bumpier, windier, more obstructed path than a nondisabled person. A disabled person may simply have more to deal with than hir nondisabled counterpart. And this is not inherent to hir condition: much of that difficulty, that obstruction, is constructed by a society that is built to suit a nondisabled person’s needs, concerns, and preferences. Some of it, to be sure, is difficulty that will never be eliminated, no matter the social context.

This means two things, things that are not at all contradictory but, in fact, must both be recognized for us to make any progress:

One, that disabled people face a great deal of difficulty that is ultimately the result of a society that cares more about the convenience of the comfortable than the comfort of the inconvenient;

And two, that disabled people may always face some amount more difficulty than their nondisabled peers due to the intrinsic nature of neurological and physiological variation.

Disability is an experience all its own. But at the same time, disability is not particularly [anything]. Disabled people are experiencing the same thing nondisabled people are, by the by: they are experiencing pleasure and experiencing pain; they are experiencing acceptance and experiencing rejection; they are experiencing stability and experiencing change. They are learning and expanding; they are teaching and demonstrating. They need food and drink, and the opportunity to get rid of bodily waste. They need shelter from the elements, a comfortable place to sit or lie. They need transport if they are mobile; they need a way to enter buildings; they need an effective method of communication with other people. They need social interaction; they need solitary time. They need intellectual stimulation; they need leisure and entertainment.

These are all things that nondisabled people need, too. They are not “special” needs. They are human needs. A core set of needs that we all share.

But these needs are not all met in the same ways.

This is the beauty of humanity, really: presented with a particular need, a set of people will take all manner of approaches, using all sorts of different resources available, finding all kinds of different ways to use them — different paths to the same end point. All paths take a toll on their travelers, while offering to those travelers certain advantages. It is up to the individual to weigh the costs and benefits of any specific way sie might take.

There is no moral weight to one path over another. That it harm none, do what you will. Whatever you are doing, so long as you harm no one else, it is good. Or, put another way: Whatever you are doing, however you are doing it, if it gets done, who the hell cares beyond that?

In the realm of disability, there is a lot of terminology like: assistive device, accommodation, care services, mobility aid, various sorts of therapy/treatment (physical/behavioral/occupational/speech/etc.); and so forth, about things/people/services which fill various common needs that people with disabilities share. The unfortunate thing about these terms is that they imply particularity to disability. But in truth, these things are not special to disabled people.

What are the needs being met? Things like: mobility and transportation, mental function, physical wellness, self-care. But we do not name the things abled people use to fill those needs as being special to abled people. This is because ability is an unmarked identity. That is, ability is seen as normal. The needs and behaviors surrounding ability fade into invisibility; they are not about ability, they just are. But disability is marked — it is special, notable. It can never just be; it is always about something, always representing and signifying something particular.

Along those lines, consider these examples:

• When an abled person wears shoes, they are not called “mobility aids.” Shoes are just things that normal people wear to do normal things. But canes, wheelchairs, and braces are special “mobility aids,” rather than just being things that normal people use to do normal things.
• When an abled person rides in a car, bicycle, or public transportation, they are not using “mobility aids.” They are just using transportation.
• When an abled person gets their hair cut, the stylist is not called their “personal care assistant.” Only disabled people need assistance with personal care tasks.
• When an abled person eats a meal cooked for them by someone else — a spouse or parent, a cafeteria or food court, a restaurant — the person preparing the food is not their “personal care assistant,” despite doing for the abled person the same thing PAs do for PWD every day.
• When an abled person uses a remote control on their television, this is not called an “assistive device.”
• When an abled person types out words on a plastic board with small key blocks indicating letters of the alphabet while staring at a screen, or speaks words into the bottom area of a plastic-and-metal hand-held electronic device while holding the top to their ear, this is not called “facilitated communication.”
• When an abled person is put through training at their place of work so that they can learn the tasks  they will be performing for pay, this is not called “occupational therapy” or “vocational therapy.”
• When an abled person wears a bra, or a jock strap, or any clothing at all, this is not considered in the same category as slings or braces.
• When an abled person climbs the stairs, they are not considered to be a special device thought up just for abled mobility.
• When an abled person takes the escalator, they are not considered in the same category as the elevator or wheelchair ramp.

The trend evident here is that there are all sorts of things that help people live their lives. Having help to accomplish things — basic or beyond — is not special to disability. It is a fundamental part of humanity. Our society would not exist without all the little things we do, from products and tools to techniques and tricks to other people and relationships, to help us get through this world a little bit easier.

I want to emphasize this for a reason. A common trope in mainstream discussion on disability is that disabled people are helpless, and abled folk must take on the noble burden of keeping them alive, afloat. Disabled people need help with doing things, and it’s such a pitiable condition to be in, dependent on other people and things to get through life. Abled people pat each other on the back for the strength and courage and sacrifice they make in helping disabled people in their family or community. They often lament that would kill themselves before living as a person who needs help with things! And some of them take their considerable platforms to argue that because disabled people need help with doing things, their lives must not be good-enough-as-they-are, therefore their lives are not worth living at all, and we (the abled world) should withdraw all help and let them all die like they should have done as infants. (No, seriously, if your name is Peter Singer and/or you are the New York Times, this is what you say in all seriousness.)

In short, this idea of help-as-special-to-disability can be dangerous.

This is why I’ve come to like Things That Make My Life Easier: because that’s what they are. They aren’t super-special things that only people with disabilities can use. They aren’t super-special things that only people with disabilities need. They also aren’t things to be ashamed of. It shouldn’t be a hit to anybody’s pride to take shortcuts or to do things in an unconventional way. It shouldn’t be a possible insult to disabled people to associate themselves with icky, pitiable disability, and it also shouldn’t be a point of anxiety for disabled people who have concerns about admitting any sort of dependence or need for help. We can admit that we need things — or even just that those things are nice to have around — without it having to be a referendum on our identity, on our worth as a human being.

Or at least, I’d like it if we were able to!

So some of the things I post about are silly little things. Because they help me. Some of them are things that are particular to my disability — things that an abled person will likely not have to ever deal with, and may not be able to relate to — but that’s part of the human experience. I am a human being; there are other people like me who share these concerns, and they are human too. Part of the human experience is our experience. Because we are human. It shouldn’t have to be repeated like that, but it does. Disabled people have claim on the human experience. We can talk about our experience as disabled people, and it is not only about disability-in-particular, but about humanity itself. No matter how much it flames the insecurities of abled people, this is truth.

***

This is a series I always hoped would catch on. Because hey, I can write about stuff that helps me live my life, but that’s only one experience. I would love to see a community full of people writing resource posts for other folks who are living our different sorts of lives. I know we all negotiate shortcuts in the process of getting through our days. I know we all have well-trusted tips and tricks for dealing with society’s demands of us — fair or not. And I think we can all share them — writing about our own experience, and letting it apply where it might, and not where it doesn’t — and not creating expectations of individuals to respond to individually-shared recommendations, with all the problems that can cause.

Anyway, there is a great range of experience within the world of disability, much more than is let on by mainstream narratives, and another reason I appreciate the chance for us to talk about it is that it exposes the nondisabled world to all the things that go into living with a disability, the way that disability can make life very different, and appreciating that in a more-than-superficial way. While knowledge of certain experiences doesn’t eradicate prejudice against them, ignorance certainly makes it more likely, and is one of the easier issues to address — we talk about our experience (among ourselves and for all listeners); they catch parts of it and get curious and start listening.

No one is required to educate those who hold privilege over them, but most of us do practice the art of education every single day, as our lives play out in front of those around us. We are used to explaining things. It is tiring, and it is wrong when people demand or expect it of us. But when we give it freely — that can do a whole world of good. What makes it bad is not the act of an unprivileged person explaining pieces of their life to a privileged person — what makes it bad is the privileged party’s expectation that we will explain. That is what sours the entire experience.

But sharing what helps us with our lives — hopefully helping other people in similar positions who might be able to use the knowledge we gain from our day-to-day struggles — there is room for great good in that.

There is no shame in doing things differently. There is no shame in taking a different route to reach the same end point. There is no shame in reaching a different end point, even! If it works for you, if it makes your life easier, that is what matters. Not your conformity to expected methods of doing things, but the fact that it accomplishes your starting goal or gets you closer to accomplishing it.

And, hey, part of disability is to learn to compromise, and change goals altogether. To realize that all the milestones you are “supposed” to reach aren’t necessary to a successful, enjoyable life. You don’t have to have a career, or even a job; you don’t have to complete or even begin higher education; you don’t have to find a heteronormative partner, get married and have kids. You don’t have to fulfill all the responsibilities heaped on you by a society built around the particular qualities of nondisabled people. You don’t have to shower every day. You don’t have to appear “normal.” You don’t have to have a huge local social circle. What you have to do is whatever makes the struggles of your life easier on you. That is all.

There is no shame in that. There is no moral value attached to a method of doing something. It’s a method, that’s all. Just a method. One method. Not the only option.

In that spirit, I’m going to try to pick this series back up, and I’m hoping that maybe other folks will pick it up too. Because I really do believe it has great potential for the disabled community. We already come together and share resources; maybe we can do that while communicating our fundamental humanity to the outside world as well. And they need to listen.

They’ve gotta learn at some point – they never know when we’re going to spring a pop quiz!

So please, listen and read, and write or speak your own experience. Let me know if this is something you’d like to do, and if you end up writing anything! I don’t want this to be my series. I want it to be everyone’s.

Here’s what I’ve written on so far:

intro post / shower chair, shower chair redux / Tempurpedic Symphony pillow / cute pill case / TENS unit

Readers — what can you add to that?

Note: Post was formerly split up into three parts, now combined.

Today’s roundup brought to you by oh look a feather toy!

An acquaintance of mine shared a post that linked to Peter Singer’s latest piece in the NYT Magazine, “Why We Must Ration Healthcare.” Most of the article focuses on the fact that health care is currently rationed in the U.S., whether by price or by less tangible factors such as ER wait times. I don’t disagree with that part; that’s nothing more than a clear-eyed look at the reality that the American health care system has barriers to accessibility. Where Singer goes off the rails for a demonstration of Able-Bodied Privilege 101, however, is when he discusses how to put a value on human lives as a precursor to putting a value on health care. In order to demonstrate the utility of quality-adjusted life-year (QALY) in rationing health care, he uses the example of how an able-bodied person reacts to a hypothetical situation in which they become quadraplegic, and how their desire to live changes. He then goes on to present a situation in which persons with disabilities (PWD) are damned if they do and damned if they don’t: he suggests that if a PWD is happy with their life, they don’t need any treatment that would improve their lives, and if a PWD is not happy with their life, then it would be wasteful to spend money on treatment that would improve their lives.

I consider this a must-read for anyone who is new to disability rights. Pizza Diavola does an excellent job showing where Singer’s logic simply falls apart, and in fact his arguments do not make sense without assuming the supremacy of the able body. But disability is not an inherently bad experience; it only becomes this phenomenon of tragedy and suffering when society refuses to provide support for people of all sorts, rather than upholding the narrow and unstable health ideal.

Following Singer’s logic, we would pretty much never seek to improve our lives in any way because to do so would admit that we were not happy with our lives beforehand, and if we were happy with it, then it would be useless to do anything to change it. How this is seen as a rational analysis of New York Times caliber, I’m not sure. But apparently Peter Singer hates the wheel, the microwave oven, cotton fabric (admitting that life wasn’t good enough without versatile and insulating body covering!), the printing press, public education, agriculture, language, music, sunscreen, and buildings (admitting that life wasn’t good enough without shelter from the elements!). Among other things.

But because disability is constructed as a tragedic deviation, we end up with nonsensical, circular arguments such as these. And it has unfortunate influence, and will further marginalize people on the basis of their inherent inferiority and thus forfeited right to life (any life, according to Singer, who would have us all killed or otherwise eliminated rather than complicating things for the currently abled — and no, unfortunately, this is not exaggeration or extrapolation; he has advocated exactly this).

Help Find the Cure for Disablism!

Disablism is a common disorder which can begin in early childhood, though its symptoms are often much more marked in adulthood. Without preventative measures, disablism can grow into a chronic condition that becomes more difficult to cure with time. Early detection and proper treatment are key to helping those with disablism lead stronger, more productive lives.

FAQs

Is disablism contagious?
The jury is still out on this question. While some epidemiologists believe disablism may have a contagious aspect and may spread virulently, other researchers emphasize individual health habits and responsibilities.

What is the treatment?
Treatment varies by the degree to which the patient is affected. Treatment focuses on creating new, nondisablist behaviors. For patients unrectifiably deficient in empathy, legal remedies may be required. Please ask your doctor for more details.

What can I do?
Most importantly, educate yourself about disablism. Ask your health care provider, “am I disablist?” Equally important, watch for early signs of disablism in your loved ones and seek early treatment. Disablism is much more cureable in its early stages than when its victims become homicidal or harm others. In addition, help raise awareness about disablism. Discuss disablism and its harmful effects with others.

For more information and resources on disablism, call the Cure Disablism Network at 1-555-BE HUMAN.

This clip from British tv show That Mitchell and Webb Look has made the rounds as a short and sweet parody of gendered advertising. I think it is also useful as a look at medicalization and the way medical conditions are presented in popular culture.

Transcript:

[Blonde, average-looking woman standing in front of white background, reacting to voiceover by crouching and grimacing, with graphic overlay of radiating circles emphasizing different areas]
Woman: Ow. My stomach!
Man’s voice: Do you suffer from gut agony?
Woman: And my head!
Man’s voice: Tension head? [Woman nods, grimacing] Got that bloated feeling?
Woman [beginning to look slightly surprised and self-conscious]: Ooh…
Man’s voice: Inevitable wrinkles? The beginnings of lady moustache? [Woman covers lower half of face with hands] And now you’ve pissed yourself again? [Woman crosses legs] Women. You’re leaking, aging, hairy, overweight, and everything hurts –
[Young boy walks on set in white dress shirt splattered in colorful stains]
Man’s voice: — and your children’s clothes are filthy! No wonder men long for other, less clammy women. For God’s sake, sort yourself out.
[Image appears on screen of assortment of several hundred personal care products, captioned "APPROX $279.99, THE LOT."]
[Woman walks onto set toward couch, with large, bulging full tote bag on one shoulder]
Woman [tiredly]: Now I’m free to live my own life, my way! [falls back onto couch]
[Scene changes to white man in bathroom with razor]
Man’s voice: Men! Shave and get drunk!
[Man has satisfied look on his face as he opens medicine cabinet, finds glass of beer sitting inside, picks it up and smiles smugly, taking a sip]
Man’s voice: Because you’re already brilliant.
[Man smiles widely at camera as woman's hand appears, groping his chest]

ginmar speaks movingly about mental illness, military veterans, and the phenomenon of “fallen women.” A few pieces; there’s much more.

It’s a pain in the ass to experience. Frankly, you’re no fun to live around during this. I mean, people have been brought up on movie mental illness, where you turn into a sweet, soulful, funny, insightful, tragic, tormented character who Teaches Important Lessons, before dying in a beautiful way that gives the hero or heroine a chance to win an Oscar.

It’s especially bad if you’re a woman, because you’re supposed to live for others, do for others, and do this al behind the scenes. The fact is that women who transgress in some way—bad mothers, not mothers, convicts, the sick, the non-sexually rebellious—-are often abandoned. Women are supposed to stand by their man. What goes unsaid, what’s kept secret is that ill women are resented, dumped, and have to face a dual burden of illness and ill-treatment. There are approximately 6,500 homeless female veterans of this war. Homelessness is often the worst and final stop on the mental illness ladder. It’s bottom. Then, too, homeless women in general are ignored. When the truth is overwhelmingly awful and about women, people just shrug their shoulders and put it down to life. When women get angry about this treatment, they often find the mentally ill label used to stigmatize them.

[...]

Suicide tidied things up neatly. By killing herself, the victim had provided her family with a tragedy over which they could weep, instead of an inconvenient complication who aroused questions that were literally unthinkable for the thinkers of the day. With her gone, so was any reminder.

[...]

What’s interesting is that both male and female soldiers are often regarded in this way: better a flag-draped coffin than a living, complex, and often angry veteran. What a drag. Better a tragedy than a complication [...]

That’s the work of a certain class. The resentment is very much the attitude of the person who discovers that those who serve are also those who know their worth. That wasn’t supposed to be part of the deal. You’re supposed to work round the clock, then disappear when not needed, grateful and humble for scraps from the table.

Which is why maybe soldiers like me, especially women, are often greeted with sadistic gloating when we crumble.

I’ll organize this, and organize that, and it will help me keep my life together for a time — organizing my closet or my deskspace or the living room — but as soon as a stressful time comes, and they come with regularity, the organization goes out the window — I throw my clothes on the floor and never pick them up, food kept on my desk with nail polish and sewing thread and sticky notes — it’s always the concept of, do what is necessary now and put everything in place later, when you’ve returned to “normal” energy state and can handle it.

But life seems to move at a faster pace than my body can keep up with. Maybe could keep up if I had a normal amount of energy, then I’d have the space and drive to get that make-up work done regularly, if I still weren’t able to just maintain everything as I went along (that being the idealized perfect state to which we aspire, right?). Maybe if I had the energy that I have when I’m at my best — but all the time — things would be great. And when I’m at my best energy level, I feel like I could continue things like that, if only I did this and changed that and kept things this way. And I try those things as they come to me, I am constantly reorganizing my entire life, never stop fine-tuning, trying to make things more efficient. But it’s never enough, I just don’t have enough in me to keep up with it all.

So maybe we get the junk off the floor and vacuum and swiffer everything, and tidy up around the edges of things, but there’s still that mess within those edges, still always something just sitting in a jumbled pile that I’m supposed to get to later. No matter how well I am — and even with an able-bodied husband doing more than his share of the work — we never get it all.

I have trouble thinking when I can see clutter. What it is about it, I don’t know, surely some gender considerations there, my insecurity about my disability always looming, and my personal idiosyncracies. But when there is visual clutter, my brain locks up and it is so much harder to process very basic things. And if only it were as easy as getting up and taking care of the clutter, then the energy I would be using on thought processing goes to the physical labor of cleaning, and I’m back to blank square one anyway, and a day later the clutter is back again.

And that’s the cycle I find myself in.

One day, a couple months ago, I sat in this chair trying to comprehend what I was reading, with a mess on the floor in my peripheral vision, and I spun around and thought to myself, why can’t this be beautiful?

This mess, this disorder, everything that comes with a life well-lived? The clothing on the floor, the half-filled mug of tea, the unmade bed, the shoes in the entryway, papers scattered about? Why do I feel like it weighs me down? Why can’t it be like the wrinkles and mottled skin and greying hair acquired with age: a reminder of everything you’ve done to earn them, a window into the life you’ve lived to get them?

Why can’t it be an indicator of richness? Why can’t it be something positive?

That one moment, I felt it deep inside. And it hasn’t come back. I just can’t look around and not feel weighed down by everything being so disordered, feel it reflects poorly on me, look at it and see nothing more than “something I should be doing but can’t do.” Something that is my responsibility, but I haven’t the capability. That is what pulls at me when I look at my mess, my beautiful mess. All I can see is everything I can’t do, while simultaneously feeling, in the back of my head, that I can do it but choose not to and that I am just of poor character, lazy, unmotivated, irresponsible, inconsiderate, slothful and selfish…

Maybe my physical mess, then, is a manifestation of my mental mess.

I just want to know. Why can’t I be beautiful too? If this is all I can do? Why do I feel lesser than the middle class folks who have these lovely tidy homes, not perfect and still full of personality, but tidy? They get to be beautiful, they get to be responsible and considerate. Why can’t I be too, if this is all I can do?

What will it take for me to look at that mess again, and see something grand? Will I ever see it again?

Our focus is often (and should be) on the women targeted by this hate, the women who suffer under this stream of threat and this actuality of violence. It should be focused on the actors and co-conspirators as well. Aside from those who take direct part in that hate or violence, another important piece of this is the effects of this misogyny upon the male in general. What misogyny does to the male identity and psyche and sense of peace and self-love. After all, the Female is not hated in a vacuum. So, too, is the Feminine, entire. And that cannot be walled off to one gender. This loathing, this hatred points back to what we know to be part of our natural being.

Men (as boys) are “asked” to join the oppression (under great threat of both social humiliation and physical violence and over and over, too) and to do this of course, we must snuff out/suppress the Feminine in ourselves. This is, of course, a great pain and loss to a human. And as this loss cannot be mourned by implied decree, this pain becomes a bitter, perverse mess that is blind to itself. And so men not only join the hate against women, but they then envy women for their freedom (to still be allowed) to be expressive, emotive, beautiful, affectionate, relaxed, vulnerable. And the loathing to self-loathing ties to envy ties to sorrow and loss and is given ground, and men are emotionally insane when modeled as instructed. And they act out this insanity even when they don’t know why. It is because they have too often been prevented from even knowing who they are to begin with.

…

For if a man cannot love the feminine aspect of himself, nor can he love a woman. And if he is hiding from that half of himself, he cannot fully see a woman. And if he would abdicate half his power, he is weak to the point of failing.

…

Because Colonization (and Patriarchy, too) are about control. And thus, Prop H8. And thus stiff collars and the Western Modes of acceptable and authoritative dress. And thus stark unforgivable lines. And thus dichotomized stances and laws that no person lives under comfortably and organically, unless they crave unnatural and aggravating wires strapping them down to the earth, making up for all the strength they have abdicated and would have used to guide and know themselves otherwise….