Thinking about Disability More

Posted: January 22, 2016 in Just stuff
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As you can see in this picture, I use a cane.  It’s pretty and shiny and it’s name is Draco. Let me let you in on a little secret; I don’t need it at all times.  So why do I carry it?

When most people think about disability, they think of people bed bound.  They think of 100% blindness, deafness, muteness.  They think of wheelchairs and walkers and crutches all day long.  They think of missing limbs and catastrophic brain injuries, but only the ones that leaves one capable of only drooling in the corner.  They think of that sweet bagger at the grocery store, trying their best.

And then, they stop thinking.

That’s where we get the heartless claims like,

“Most people on disability are lying and cheating the system.”

“Oh, poor you, have a bad back? Take some aspirin and get back to work.”

“I know she’s on Social Security, but I saw her walk to the mail box without her wheelchair yesterday!  She’s a cheat!”

You know, shit like that.

If they bothered to keep thinking, they might discover a few things.  They might discover the concept of “good days” and “bad days”. They might realize that disabilities come in different levels and flavors and severity.  They might realize that not all disabilities are in the legs.  They might get what ‘chronic’ means. They might even realize that mental illnesses can actually be disabling.

See, for me, a good day is getting up without using the headboard to lift myself.  It’s getting up and down the stairs slowly, actually getting shit done around the house.  It’s not needing to sit in my chair to put on pants and socks. It’s feeling up for dialing a number and speaking to someone. It’s standing or sitting in front of people and talking to them without feeling like fleeing (too much) It’s not needing my cane to get around to say, the corner store.  It’s feeling like going to the corner store.

It’s feeling that I don’t want to die today.

A bad day is, well, turn all that on it’s head.  It’s being so tired that my day turns into a series of naps. It’s sliding against the wall going down the stairs, or just not bothering with them at all. It’s crying in bed or in front of my computer for no discernible reason and ignoring PMs and sending phone calls to voicemail. It’s going 3-4 days in the same pajamas without showering because who the fuck cares, right? It’s being so anxious that I don’t even want to exchange greetings with anyone who lives with me.  It’s beating up on myself for being worthless.  It’s considering my options for suicide.

And yeah, those are cane days.  I lean on the fucker when I know I’ll be standing for a long period of time (like waiting for a bus) or around people for a while (the grip is nice and steady).  I use it to get in and out of the car. On the bus, I sit in the preferential seating.

When someone asks me why I use a cane, I give a short answer.  “Oh, I have fibro.”

What I want to say is “Because we live in a society that values our ability to labor over quality of life, I worry about being judged on my ‘good days’, so I carry it with me at all times whenever I leave the house.”

But those are longer words.  And they require people to think.  It’s a bit much to think about for others.

I really wish they would, though. The disabled need those thoughts.

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Comments
  1. James says:

    So much this. I’m so so so tired of it. If I feel like I can stand without my cane at all, it feels like I’m lying because no one can realize the exact things you’re saying. I never knew how much I really needed this post. Thank you.

  2. Ashleigh says:

    Thank you for this blog. Seriously. I have fibromyalgia as well, and cannot say enough how much I relate to this.

  3. Dena Maxwell says:

    Being on Social Security Disability myself and having experienced this same type of discrimination, I can totally relate. You hit the nail right on the head when you said “…we live in a society that values our ability to labor over quality of life…”

    And speaking of good days and bad days… there are not many employers who would not fire an employee who has been forced to use all their sick days and vacation days because of inability to work on the bad days. Especially in this economy! And not many of those employers would give their ex employee a good recommendation when they apply for a new job. One of the main things potential employers look for in an applicant is a good attendance record.

    These naysayers need to realize that the legal definition of disability is “an inability to maintain substantial, gainful employment.” They should especially note the word “maintain.”

    Many of us are forced to go on disability for the simple reason that no one will hire us because they are unwilling (and sometimes unable) to accommodate our needs.

    And then there are the people who actually believe that their tax dollars pay us our Social Security checks each month. These people should learn how Social Security works; it’s not that complicated. Those disability checks are comprised of money that the disabled person paid to the Social Security Administration. It was deducted out of each and every paycheck that person (and only that person) earned when they were still able to work. In other words, before they became disabled.

    I’m glad to say that there is an organization that is bringing attention to our concerns:
    http://www.invisibledisabilities.org/
    They’re also on Facebook.
    We’ve got a long way to go, but it gives me some hope to know that there are people out there who are working to spread the word and educate the public about how life actually is for us.

    • Feminace says:

      That was my biggest fear when I worked, there were even rumors about possibly letting me go because of my calling in so much.

      So I’m hoping for a good outcome with this SSA hearing that should be coming up for me this year.

  4. Adamo (when online). Otherwise heather Rosa says:

    I still remember how embarrassed I was the first time I used a scooter cart in a Wal Mart. I wasn’t THAT handicapped: I was so sure of that. Now it’s my normal. If a store has no motorized carts, I won’t shop there. On-line gets my business. I can still walk from the car to the cart, but “choose” not to walk farther because I’m just not into torture. Before my health finally mandated my retirement, I was lucky in that the job adapted to my needs. I still hear comments relayed third hand that since I can walk a little, I should be able to walk a lot, the most recent regarding what I should be capable of in a volunteer position. I am fortunate to be in an environment where most understand good and bad days, and are working to find a way for me to still be useful given my physical limitations. It’s not universal understanding, but all support helps. Thank you for this.

    • Feminace says:

      I’m with you. Sometimes when I’m just too damned tired, I will cane out of my car right into that cart. Since I also have earbuds in (because anxiety and noises), I tend to miss the judgey looks, but I can’t miss them all.

      At 35, I’m “too young” to need a cart. Well, I sure wish they would tell my fibro that. Maybe it’ll listen to them instead of me.