Things That Make My Life Easier, An Invitation (Part 3 of 3)

Cross-posted: three rivers fog, FWD/Forward, Feministe.

Part 1Part 2Part 3

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?


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12 comments for “Things That Make My Life Easier, An Invitation (Part 3 of 3)

  1. Dr. Confused
    August 23, 2010 at 7:04 am

    This is a nice series. I don’t really think of myself as having a disability, but in truth I think my mental health issues and ADD might qualify.

    I also use a molded foam pillow. I wake up with headaches whenever I use any other kind. (Not migraines, just tolerable annoying headaches).

    For my ADD, I use a lot of cheap disposable stuff. Pens, water bottles, etc. I am indeed an environmentalist and understand the concerns about disposables, but if I were to buy a more expensive, reusable whatever I would end up buying it just as often as I buy the disposable ones, because I would lose it. Sometimes a water bottle lasts me three months, then I lose it, buy another, and lose three in the next two days. I overcome my losing my pens problem with abundance: there are pens in my jacket pockets, my backpack, my pannier, my desk drawers, all over my desk, etc. I lose the one I’m using and immediately find another close by. I also go without hats and scarves, or buy really cheap ones, lose them, and go without for a while. I buy hooded rain jackets and never use an umbrella. I keep my money and cards in my pocket; I never carry a purse (and these days not even a wallet). I use Microsoft Outlook and its reminders function. I don’t write things down on paper; I keep everything electronically (so I guess my tool of choice there is Microsoft Notepad).

  2. Sunset
    August 23, 2010 at 9:08 am

    I presume you’re taking our suggestions on what makes our lives easier?

    The biggest one for me is just something to do with my hands. Anything – a stress ball, a simple sewing project, etc. I have an anxiety disorder that can make the sitting still and focusing for hours demanded of a college student very difficult. Something to do with my hands makes it infinitely easier. I’m in that odd place of “disabled” without being officially recognized as disabled, so I am very thankful for a set of tolerant professors.

  3. Paraxeni
    August 23, 2010 at 9:58 am

    Can’t do links on my phone, but if anyone has difficulty finding the things I’ve recced I’ll post links to them later.

    Sound Asleep pillow (about £14 on ebay UK) +mp3 player – the pillow has a speaker in it, and playing white or pink noise mp3s can help de-focus noise made by tinnitus, or drown out annoying noises that irritate hyperacusis.

    Also the mp3 player+good noise-cancelling ‘phones, and the same white/pink noise mp3s, can help cut down on upsetting background noise in large shops/public places.

    A grabber – never underestimate the power of a grabber. Mine cost about £8 in a discount shop and it is invaluable for grabbing stuff, picking things up, and almost any task that involves grabbing/nudging/pushing. Mine has a hook and a magnet on the end, so there’s very little it can’t do.

    A good rucksack with thick strap and a wide back-base. – a lifesaver. Sometimes I need to get upstairs and take things with me. Each of these things cancels out the other. With my trusty Jansport Hearts rucky I can carry my precious things/food/drinks upstairs while clambering up them on all fours for added stability.

    Fleece blanket – what can’t this do? Well despite other uses I’ve blogged about in sex/womens health spaces they have other uses too. They’re very lightweight and the polar fleece has no pile. For anyone sensitive to shedding pile (like me) they’re ideal for keeping me warm without being too heavy or bulky (so they’re easily carried). I also find that putting one on top of the bedsheets helps me to sleep much better, than if I was lying on plain cotton. They wash very easily and can make good lap covers/surface protectors for people (again, like me) who spill things often.

    Cushtie (but preferably the knock-offs which are only about £2.99)
    http://www.amazon.co.uk/Funtime-Ltd-9249-Cushtie-Squish/dp/B0006VSTUQ

    A little squishy cushion filled with polystyrene microbeads. I have 6. Why? They can prop up an aching back, help with lumbar support in a car/wheelchair, keep the knees apart during sidesleeping, rest painful/uncooperative limbs on them, kneel on them, whatever you want really.

    Sun-glasses – 20 pairs and counting, none cost more than £2. I have them in every colour from light purple through to black, to prevent seizure activity from fluorescent lighting, to watch TV/use internet during migraines, to cut down vomiting caused by flickering light on car journeys, to help cut down glare when filling in white forms. They’re all over the house. The disability assessment doctor was very impressed at my ingenuity!

    A lap-tray – A tray with a microbead cushion on the bottom. Resting on my knees the beanbag gives it support, and provides a level surface for food/drinks/netbook/games/letter-writing/form-filling etc.

    Baby wipes – spills, quick clean-up when a shower’s not possible, freshening up when it’s warm, wiping lotion/cream residue off hands.

    Takeaway tubs – the little plastic/foil tubs that takeaway food is delivered in? Again, a multi-purpose object that my life would not be the same without. Are fully sealed when the lids are on, so food (hot or cold) can be transported around the house without fear of spillage. Pills can be kept in them, plants can be stood in them, food can be eaten from them if you don’t have the energy to wash plates, computer bits and bobs go in them, you can puke in them and seal them straight up for easy disposal. For that alone they’re worth their weight in er… plastic.

    I only use recyclable ones, trying to be an ethical crip.

    I’m sure I’ll think of more things, but these are the ones that spring to mind. For anyone in the UK Home Bargains (TJ Morris) are a discount store that sells a wide-range of disability-related products. My grabber, shower seat (£15), pill-keeper and lap-tray (£4) came from there, and they have Blue Badge holders/wallets, visual aids and flashing doorbells and stuff like that. I also got my memory foam pillow, fleece blankets, plastic containers, and squishy little pillows and sunglasses from them too. They sell cheap batteries (but proper brands like Duracell and Ever Ready), toiletries, medicines, pet supplies and food as well. Their stores are accessible (at least the 6 I’ve used) with wide aisles and a good layout.

  4. William
    August 23, 2010 at 11:47 am

    Quad-ruled paper, combat boots, and taps.

    I have mild cerebral palsy (leading to a really awkward gait, poor muscle control/tone, and walking trouble) and a non-verbal learning disability (which pretty much destroys my ability to think in three dimensions or relate to things spatially).

    Quad-ruled paper: My handwriting is bad. If I’m not extremely careful, my sentences will end up looking like a cone, the letters getting bigger and moving at more and more of an angle as I go. What rescues me is the graphing paper you used in high school geometry (I used it there too, all three times I failed it). You can get notebooks full of the stuff at pretty much any OfficeMax/Depot. Two letters to a square and I constantly have something to guide my eyes and guage how much space I need to leave between letters and words. Also: four squares to an inch means that I can actually figure out how big things are.

    Combat boots: I roll my ankles a lot. Awkward gait, my ankles don’t stay straight when I pick them up but tuck a little bit under me, and I can’t always tell when the ground they’re about to come down on isn’t even. Combat boots are like a shoe and a brace all in one for me. They keep my ankle straight, they give me a little extra support, and they’re durable enough to survive being worn by someone who walks into things every day. I can even get them with a zipper and avoid having to tie laces, something which is pretty close to hell if you have poor fine motor control.

    Taps: The way I walk tends to grind through the heels of any shoe I buy pretty quickly. Even something a durable as a combat boot is ground almost through inside of a year. Worse, the way in which I walk means that as my shoes get ground down, really dangerous accidents like rolling my ankle become more likely because I’m essentially walking on an edge. Tap dancers use these little metal plates on the bottom of their shoes to make tap-tap-tap sounds. It took a little bit of doing, but I found a shoe repair place by my house that will put them on a boot for about 12 bucks. I’ll grind through those every 4-6 months, but as long as I stay on top of it I can significantly expand the lifespan of a pair of shoes.

  5. Paraxeni
    August 23, 2010 at 12:38 pm

    Is there a reason none of my comments are being approved? I could make them shorter if it helps.

    • August 23, 2010 at 4:01 pm

      Paraxeni, all of my posts are on full comment moderation. My intro post explains a bit more about why I chose to do it this way. And I work full-time during the day and have other offline obligations to attend to, so I am not always around to approve comments.

      Other people moderating on the site approve comments for me while I’m gone that look ok to them, but they may skip over others if they look questionable or even because they just can’t engage on that issue right now, or have trouble parsing it, etc. (which is not always a problem with the comment itself).

      Also, I am a bit pickier with the comments that go through in other posts, but that doesn’t have any bearing on this conversation right now! It’s a delay, not a problem with your comments in particular, though if you’re curious as to my general moderation ethos you can check our comment policy at FWD, which has proven to be useful for me.

      Folks, I am loving reading comments here and if you post to your own blog I would love to have you link it for us. I collected my links here on my space, and may add a collection of links around the blogosphere whenever I find the time/energy to do so. It doesn’t even have to be specifically under the umbrella of this series, but if it’s something you’ve written about that has helped you and may help others – feel free to drop a link.

  6. Kristen J.
    August 23, 2010 at 1:21 pm

    I have intermittent debilitating sciatica. When I have a flair up a couple of things are my salvation. (1) ultrasound treatments, (2) massage, (3) thermacare pads, and (4) chi machine.

    The ultrasound treatments are amazing. Bad flair ups are so severe that I cannot walk and since I can’t take pain killers I have find something else to manage the pain. I’m very lucky that these treatments are covered by insurance, but unlucky that the waiting list for my clinic is two weeks. Why insurance won’t cover a personal treatment device I will never know.

    Massage is what I use until I can get to the clinic. It doesn’t work quite as well, but since my SO learned the techniques to help manage my pain…its free and readily available.

    The thermacare pads are life savers for making it through a work day. I have a million of them stashed around my house and office and a few in my purse. I wish they created more of the adhesive ones since the back ones aren’t low enough to hit where my sciatic nerve is damaged. I hate to use something disposable (and so damn expensive) but nothing else works as well.

    The chi machine is weird. I don’t know why it works. I haven’t heard of it working for anyone else. It’s been well documented as a scam. But for some reason it helps. If I’m having a mild flair up I can use it for half an hour and then sleep. When I wake up I feel better. I don’t know what it does and my doctor thinks its completely in my head, but it works for me.

  7. August 23, 2010 at 3:50 pm

    I’m not sure if this is what you’re looking for, but what’s been weighing on me a good bit is the discrepancy between the expectations society places on those who are not disabled, versus the limitations, particularly stress-related, that are true for people like me with bipolar disorder and Generalized Anxiety Disorder.

    To provide a very recent example, I was under a lot of stress, compounded with a three-week period of depression caused by not having enough of a certain medication in my bloodstream. This triggered a major case of psoriasis, which I was apparently genetically predisposed to but had never experienced as severely as I did.

    I was told by a dermatologist, as I have been told by all kinds of specialists over the years to “limit stress in my life”. The problem with that is, for me, everything’s stressful. It’s why I’m disabled, in part.

  8. Paraxeni
    August 23, 2010 at 4:34 pm

    Thanks for explaining amanda. I’m having some med-related freak-out issues at the moment and I’m probably being wildly paranoid!

    This has been a great series because I used to drag my broken self through hoops to do things ‘normally’ I’d tell myself “No you can’t sit on the couch and chop veggies on a lap-tray” or “You have legs, so walk”. I’d force myself to walk up the stairs which often caused terrible injuries after I fell right back down, when crawling was not only faster but safer.

    For a long-time I was was the worst stumbling block in accepting my disabilities because of my internalised ableism. Now that I can say “Yeah, I’m not wearing myself out doing X when Y has the same result without the pain”, now that I can allow myself to ‘look’ disabled (in the wheelchair) my life, and my partner’s, is much easier.

    Oh – I have a couple more things to add to keep on topic:

    Irlen Filter/ColorFilter: Freeware for Windows-flavoured PCs that allows you to put a custom colour overlay on your screen. Very useful for those with visual or learning difficulties that are minimised by using overlays.

    http://www.musatcha.com/software/ColorFilter/

    Moldex Earplugs – for when noise dampening just won’t work – cut it out altogether. Moldex foam earplugs are amazing. I usually get 50 pairs a time (each pair is wrapped separately) on ebay, and put them in every bag, every room, and every pill box. If I’m in a situation that is just unbearably loud and is likely to cause an outbreak of tears I just pop them in. They’re reusable, colourful, and very unobtrusive and not expensive.

    Plugins for Google Chrome – Chrome is my browser of choice because of my visual and sensory impairments. It’s got a very ‘clean’ interface, and lots of extensions that can make it even more helpful for PWVI.

    1) Zoom – does what it says on the tin. Sits on the toolbar and has -,+, and Normal commands.

    2) Adblock – blocks ads and custom-defined images. No more twitching after encountering a bright, flashing ad.

    3) Chrome Page Reader and Read Me Please! – TTS plug-ins for the visually impaired user.

  9. Alexandra Lynch
    August 23, 2010 at 6:24 pm

    Pill sorters. I also talk with my doctor to avoid meds that have to be taken three or four times a day, because the ADD and the pain will wind up with me being noncompliant. Much better to work in something that is a twice a day, since I already take pills then.

    I love the calendar attached to my email. I come home from the doctor, I take out the card, I set up my calendar to email me a few days in advance and then the morning of, so I actually leave somewhere around on time.

    It’s not a premade thing, but I have a really high bed, and it works nicely. My husband made it. In the morning, instead of having to try to get up, I just have to sit up, slide my legs over, and fall onto my feet. It also has thick velvet curtains that not only look nice, but block out all sunlight and room light if one needs to be away from that due to a migraine.

    Chlorox wipes. Latex gloves take cat hair off furniture fast. Crock pot lets me stew things up without standing over the stove, and the vaccuum sealer lets me package it up for the days where reheating is all I have the spoons for. The electric wheelchairs in stores for the really bad days when I can barely walk. That cat food and cat litter come in small bags; I can’t always manage a 25 pound bag either in the store or filling the boxes.

  10. Tori
    August 23, 2010 at 8:28 pm

    1) Membership in an online female/sexual health community. I’m at the point where my health issues are likely to, at best, baffle my health care providers (if said providers don’t belittle them entirely). It’s a huge time, effort, and money saver to be able to ask large numbers of knowledgeable people all at once from my own home. I’ve found I’m more likely to receive suggestions that work in whole or in part — and of course, it doesn’t cost 2 hours and $50 per person I ask. (And they never give me grief about losing weight, either!)

    2) It’s an action more than an object, but — squatting rocks my world. There are times when I can’t stand (hello, pain) but can’t sit (no seats). Squatting helps me relieve back and pelvic pain in a pretty portable way.

  11. Broce
    August 24, 2010 at 10:49 am

    I have MS, and often when I first wake, I have trouble with balance doing things like reaching for a glass on my nightstand. So, after having fallen out of bed and knocking the glass over about 15 times, I substituted one of those travel coffee mugs, and put a straw through the little hole intended to sip out of. At least now if I knock over the glass the spillage is limited, and if I’m lucky doesnt land on me.

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