Disability: Some Costs of Disability

[Content Note: Disability]

Wheelchair by George Hodan

Ana's Note: I chewed my lip over posting this because there's a lot of financial privilege on display here. I'm extremely lucky and privileged to come from a relatively moneyed family and (at least in 2012) to have worked at a job that pays a good yearly wage. So on the one hand, I don't want this to come off as "hey, look at my horrible privileged life!" On the other hand, I want to spotlight disability issues, and this seemed a good way to provide a monetary picture. 

Last year in review, from my Amazon past purchases for 2012. Note that this doesn't include anything bought or acquired locally, such as my walker or my clothing. Nor does it include medical treatments not provided by Amazon, such as pharmacy medications, doctors visits, hospital stays, etc.

Daily vitamins, necessary to cushion system-shock before and after surgery. Recurring cost: $10 for 75 days, or $48.

Water bottle and water bottle sling, since my medications make me dehydrated and I can't easily walk to the water fountain at work: $24 + $8

Hot water bottle, for "wet heat" pain treatments. With fancy heat-sensitive fish so that the caregiver filling the bottle doesn't scald me. $24

Lunch box / bento. Uniquely satisfies the requirements of carrying my entire lunch in a light-weight compact container that sports an over-the-shoulder carrying case. Necessary since I cannot walk to the cafeteria. $43

One-touch timer that allows me to repeatedly set hourly reminders for stretching exercises at work, per doctor's orders. $15

"Activity Tracker" with wireless uplink and charting ability to prove to my doctor that "fat" does not equal "sedentary", and thus receive adequate care. $100

Wireless weight scale, for similar reasons of medical ass-practice and fat-phobia. $130

Wide grocery totes which can be carried in the arms (picture one arm underneath for support and the other arm embracing the bag in a 'hug') rather than carried by hand (which hurts my back). $29

32-inch and 26-inch "reaching aids" to pick up things without stooping. $20 + $14

Bedside rail. Necessary in order to get out of bed in the morning, particularly in the months immediately after my surgery. $44

Toilet rail. Necessary in order to stand from a sitting position on the toilet, particularly in the months immediately after my surgery. $39

Prop desk, to hold laptop/tablet/e-reader while bedridden. (Not calculated here: Laptop, Tablet, e-Reader.) $50

Walker bag, because using a purse with a walker is an act of dexterity beyond my capability. $15

House slippers, because hardwood floors and kitchen tile are hell on a bad back. (Note: These slippers were awful, so this is not a recommendation. New ones were acquired at a local store for three times the price.) $12

Laptop roller bag. Because having an awesomely accommodating work-from-home-on-bad-days job policy means a laptop that must be ferried to work on the good days. $50

Roller luggage for hospital stay. $190

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If I calculate correctly, that's $855 total for one year's worth of disability-related purchases from Amazon. And that's just from a quick once-over on my purchase history; I'm confident that I've missed a number of disability-related items, like the e-reader that means I can read the books I can no longer hold, and the tablet computer that meant I could carry on some semblance of correspondence from the hospital.

Nor does it include anything bought locally, like special clothing: bras that don't bind the lump in my back, stretch-waist "jeans" that don't pull on my scars but are also appropriate for work, shoes that provide padding between my feet and the floor while again being work-appropriate, sleep shirts that button up the front and can be put on from a hospital bed, new panties because bodies retain water after surgery.

Eight hundred dollars may not seem like much in a year to some readers. Honestly, it's not "much" to my family in the sense that it means the difference between food or shelter -- we'd rather not have these expenses, obviously, but we are fortunate enough to be able to afford them.

But having said that, it's important to note that this isn't a "one-time" disability cost of $800 and then you're done for forever. Many of these items have recurring costs associated with them; the cheaper items like the water bottle sling, house slippers, and bedside rail have already incurred enough wear to warrant ordering replacements. Other items can be easily damaged as part of their normal use: the "activity tracker" pedometer hooks to a waistband (and I can't wear neck-lanyards as part of my back-and-neck issues) and has fallen into a toilet once already. Larger-ticket items that can be expected to last longer are also not entirely representative of lifetime needs: sure, I may only purchase luggage once every twenty years, but that's also true for the two-wheeler handcart that we purchased the year before, or the carries-the-recycle-bins-to-the-curb wagon that we bought the year before that.

One of the fun things about paying for a disability, really, is that you're never done.

This is why good health insurance still isn't enough to ease the financial gap between able-bodied persons and disabled persons. Because even if all my medications were covered 100% (they aren't), and even if my surgery and hospital stay and doctor visits were covered 100% (nope!), and even if my brace and my walker and my cane and my bone stimulator harness were covered 100% (close, but no cigar), there would still be an added financial cost to being disabled that goes above and beyond the upfront medical treatments for that disability.

And considering that many disabled people have to make do on less money just to begin with (as my family is about to experience now that I've finally moved over to "part time" wages, and may well be faced lay offs in a matter of months), these added costs are frequently genuinely burdensome rather than being merely annoying. So far, I've been lucky enough to be able to afford the difference. Too many others just have to do without entirely.