Blogging Against Disableism Day: On Being Able

"Ableism."  Sometimes also called "disableism."  They are words my spell-check doesn't recognize.  "Disableism" isn't in the dictionary, though "ableism" is.  You might notice that the suffix "-ism"... it is the same one we add to words to get "racism" and "sexism."  The Oxford English Dictionary defines "ableism" as discrimination in favour of able-bodied people; prejudice against or disregard for the needs of disabled people." 1

Ableism incorporates many, many things.  I encourage you to read other posts about (dis)ableism by checking out the other Blogging Against Disableism Day posts.  Posts this year and previous years discuss discrimination against individuals with disabilities via reasonable access to public places, right to education, appropriateness of health care, mobility equipment, insurance, and doctors, and language use.  If you will bear with me, I'd like to take my post today in a slightly different direction.

The definition above may lead you to think of things like giving a job to an able-bodied person as opposed to one with a disability, or not providing ramps or working elevators (a rant for another time).  Today, I'd like to address a different "disregard for the needs of disabled people"

The need to be allowed to do the things that we can do.

This is one of the things that is most frustrating to me as a person with a disability.  Sure, there are many things that I can't do or chose not to do.  But I like having the right to choose for myself.  This is perhaps better explained through examples:

I was shopping with my mother yesterday.  I love my mother and know that she really just wants to help me and take care of me (she hasn't gotten over the fact that I'm an adult and struggles with my disability, perhaps more than I do).  We were at the store and, first, she encouraged me to use a wheelchair.  I had my crutches and was doing well enough, with enough "spoons" (energy to do stuff) to go around, and declined.  She gave me the same look she's always given me when she thinks I'm just being stubborn.  When we had finished shopping and were heading to check-out, she gave my little sister the keys and sent us out to the car so that I wouldn't have to stand any more.  But it wasn't that we were given the option of going out to the car, we were sent.  And we were sent purely because I have a disability.  I feel like I wasn't respected in my choice to use crutches instead of a wheelchair and that I wasn't given a choice as to whether or not to stay in the store or go out to the car.

On many instances, I have had people take what I am carrying out of my hands to carry it for me, even when I have said that I can do it on my own.  I know that I appear to be struggling, but this is, in my opinion, akin to asking a person in a wheelchair if they would like a push, and then ignoring them when they said "no," pushing them anyway.  If an able-bodied person had declined having someone help them carry something, they would have been left alone, but, with a disability, my desires were not respected in favor of what someone else thought was best.

In my schooling experiences, I have had several times when people have introduced an activity and told me that I "don't have to participate."  That I "can just sit and watch."  I have been ordered "not to get up."  Instead of giving me the opportunity to choose whether or not to participate as I am able, I am already judged not to be able and had to argue or insist to be allowed to take part.

One of my very most favourite quotes is attributed to Helen Keller (and, I believe, a variation of a quote given by Edward Everett Hale) and reads as follows:

"I am only one,
but still I am one.

I cannot do everything,
but still I can do something;

and because I cannot do everything

I will not refuse to do the something that I can do."

As an individual with a disability, I know (or am learning) my limitations and, in short, what I can and cannot do.  No one else can ever know this in the way I do.  That makes me the one and only expert on myself and my abilities.  I ask for the same respect awarded any other able-bodied individual: the right to choose for myself.  To be given the same opportunities as everyone else in an everyday situation and to choose whether or not to do something as any other person would be given that choice.  And the right to have my desires respected.  To do otherwise is discrimination based on perceived ability or disability ... it is (dis)ableism.

1- "ableism, n.". OED Online. March 2011. Oxford University Press. 18 April 2011

The Worst

As a part of the undiagnosed ridiculousness that I live with, I experience a variety of pain:

• plantar fasciitis
• ankle pain (not otherwise specified)
• patellofemoral pain (knees)
• hip pain (not otherwise specified)
• degenerative disc disease (lumbar)
• hand pain (not otherwise specified)
• sciatic nerve pain
• and probably more that I really just don't want to think about right now.

But the worst pain of all is the neck pain.

I could feel it coming on as I went about my day on Saturday.  I should have paid more attention to the little twinges of pain shooting from my skull down my arm and back, but they were only "little" twinges and so I ignored them.  I should have immediately embarked on a quest to quash them with strong doses of anti-inflammatories, muscle relaxants, hot packs, and Bengay.  But, as I said, they were "little" twinges, so I ignored them.

Sunday they refused to be ignored any longer.  I woke up before my alarm (after having a miserable night's sleep) with the pain pulsating, ripping through my body every time I moved, and rendering me unable to do most things for myself.  I couldn't lift my arms above anything that moved my elbows away from my sides, not even to get a cereal bowl from the cupboard.  Bending to lift the milk from the fridge and holding it to pour it would have made me scream.  But I needed food in order to take the massive amount of anti-inflammatory that I should have taken the day before when I could reach the cereal bowls and lift the milk.

Enter my superhero--Sir Husband the Wonderful.  He spent the morning bending and lifting and carrying for me.  He poured me a bowl of cereal, got me my box o' meds, and brought me the Kleenex box when the crying-from-pain started to impair my abilities to see and breathe, much less eat.  He helped me get my clothes, smothered me with Bengay, and brushed my hair (some, anyway.  I know I was asking a lot).

I wasn't able to do anything yesterday.  I couldn't knit.  I couldn't read.  I couldn't watch TV.  Everything was uncomfortable.  Of course, soon the meds kicked in and my brain abandoned me.  The combination of multiple bottles that caution, "May cause drowsiness" is usually marked drowsiness.  I was loopy.  I was out of it.  Of course, after adding a sleeping pill to try to just knock myself out to make the pain and loopiness go away, I received an email that needed prompt attention (or at least an "I have received this email and will get right on that... tomorrow, when I can think again" response) and could barely keep my eyes open long enough to register that what I was typing was not showing up properly on the screen.

I slept moderately well last night--better than I do most nights, but not as well as I expect to when I take a sleeping pill.  This morning, the pain is better than it was yesterday, but still a powerful presence.   Sir Husband is off slaying dragons (working), so I'm on my own today.

I hate when my neck hurts.  The last time it hurt this badly (right before my birthday a year and a half ago) I ended up going to the ER at 4am.  I can't do anything, like I said above, but even more so, I can't do things like shave my legs and wash my hair.  I have to rely on others to help me so that I can get food and put on a sweatshirt.  And I can't just sleep because I can't find a comfortable position laying down (unless, of course, I am just so medicated that my eyes won't stay open anymore at all and I'm incoherent).  I never know when it will strike, but when it does, my life comes to a screeching, agonizing halt.

To add insult to injury, I don't even know what causes it.  The ER said "myofascial pain."  My GP at the time said "pinched nerve."  My rheumey says, "I'm not worried about it."  Oh, yes.  He's not worried because it's not causing damage (so far as he can tell without running x-rays, MRI, or any other test other than physical exam) and still responds to the treatment (eventually.  After being miserable for a few days.  But does he care?  No).  To me, this says that the problem is recurring.  That means something is wrong and it's just going to keep coming back again and again.  I don't know if it will get worse, but without treatment to actually find and fix the problem, it can't possibly get better.

I suppose that the responsibility really is mine, and that I ought to call up my new GP (gotta meet her sooner or later anyway) and be the squeaky wheel.  SIGH.  I'm not in the mood to be in more pain though, and that's what driving, sitting, and then being poked and turned and bent will do.  

New Year Thoughts pt.1: Response to "My Life in Pajamas"

I've been doing quite a bit of pondering lately.  The change to a new year always causes me to ruminate on the past year and contemplate the year to come.  I've intended to write this post since January 1st, but clearly I haven't yet, as it's now late on the 9th and I'm just starting.

Yesterday I published a post on my knitting blog about my new year's knitting resolutions.  Resolutions are something that I am extraordinarily bad at keeping, so I normally don't even bother to set them.  But I have set knitting goals for this upcoming year, and I'm reasonably sure that I will keep them purely by default.  But resolutions in other areas of my life are harder to set, because I know I'm ridiculously stubborn and that life is . . . unpredictable.

I could set goals about getting rid of the weight that the Lyrica caused me to put on, cutting down on my candy intake, going to bed at a decent hour and waking up in like fashion, and then getting up out of bed and getting dressed, as opposed to spending the whole day (or at least most of it) in bed in my jammies.  But I know myself.  I know that exercise and my million diagnoses and I don't get along, that I love chocolate have tried cutting back before and simply don't want to give it up enough to actually do it, and that I can never count on falling asleep by a certain time and feel better when I get more sleep anyway, even if it means falling asleep at six in the morning and sleeping until two or three in the afternoon.  But the jammies . . . well, that is an issue.

This past week, I read Abeeliever's blog post, "My Life in Pajamas," and have been thinking about it a lot lately.  How often am I still in my pajamas when my husband gets home from work?  I always feel guilty when that happens.  It's like waving a big flag that says, Hey!  I accomplished absolutely nothing today!  And while I know that's not entirely true, I know that I am exceedingly more productive when I do get dressed before noon and put on my shoes.  Even if I do go back to laying in bed, I feel less like a slug and more like a human being. 1   

I've spoken with people before who have said things to the extent of, "I would spend my whole life in my pajamas if I could," to which I have responded, "It's not all that it's cracked up to be."  I'm frequently asked what I mean by that.  Sure, pajamas are comfortable and cozy, even comforting.  But when you've spent day after day in bed because you don't have the energy to get up, because the pain caused by getting out of bed is agonizing, and because these things are completely out of your control, then I, at least, begin to associate my pajamas with being at the mercy of my disease . . . being powerless.

As Abeeliever wrote, "It is what the pajamas represent that's important here."  So what do they represent for me?  They're a daily reminder that I have a chronic illness and that my life is no where near what it used to be.  They represent the effort that it takes to do "simple things," like showering and getting dressed.  But they also represent "giving up."

While I know that there are some days where staying in bed is absolutely the best thing for my health, I do think that there are other days when I stay in bed because it is easier to stay in bed than to fight my body to get it to do what I want it to, but I also know that staying in bed is not the best thing for me in other respects.  I know that I feel better emotionally and energy-level-wise when I get out of bed, get dressed, and do my hair.  But each day I play a guessing game as to whether or not I have the energy reserves to actually get to that point, and I wonder if I err on the side of caution too often.  (Which leads me to another blog post I want to write.)  I suppose my pajamas also represent other things not accomplished, like writing this blog post ten days after the new year, when I originally intended to write it that day or the next.

So maybe I do need a resolution here.  I'm not sure what, yet, but I need a change.  This is a new year, a representation of new life, and I do have a life to live.  And "life in pajamas" is not living it.

1- I then wrote the following comment: "I'm not sure where I'm going with this.  It's almost midnight, and I know better than to publish something after I've taken melatonin.  Hmmm... well, I'll let my mind try to sort this out as I pretend to sleep.  More tomorrow."  The rest of this post was written the next morning.

What's in a Name?

As is tradition, I am opening this blog with a "why I have created this blog" post.  Not exciting in and of itself, I'm sure, but I have a story to tell, and I am here to tell it.

Generally, I blog over HERE.  And, why, you ask, do I not share my story there?  Most of my readers over there are knitters and have no idea about my medical status.  It's more complicated to introduce the whole story over there to people who are really only interested in fiber and needles than it is to start over here and talk about my disability in a place where the readers really aren't interested in the knitting stuff at all but who perhaps live with disabilities themselves.

I've been mulling over creating a new blog for some time, but haven't gotten around to it.  Ok, that's not true.  I've attempted this story in other places, but it hasn't really "stuck" so I'm trying again.

So welcome to the blog of the

CRIPPLE EXTRAORDINAIRE

Cripple- noun.   According to the Oxford English Dictionary, it is "one who is disabled (either from birth, or by accident or injury) from the use of his limbs; a lame person."1  It has come, in our society, to be a term seen as derogatory and can be used offensively.  But not here, not with me.  Here it is just a way of telling the truth and calling things as I see them.  For reasons discussed below, I am a "cripple" and that is pretty much the quickest way to put it.  (I do not, however, advocate casually using this term with anyone else.)

Extraordinaire- an adjective fantastically borrowed from French that retains its word order by being placed after the noun it is modifying, like "galore" (pardon the linguist).  Again, the OED, "remarkable, outstanding; of a person: unusually active or successful in a particular field."2  I don't profess to be a remarkable cripple in that I am somehow better than others with disabilities or should be praised for all the things I do in spite of my limitations.  In fact, please don't.  I will elaborate on this further, but for now, take my word for it.  No, my goal is to be extraordinary in life in some way.  I just happen to be crippled.

So I am here to tell my story that you may glimpse into my world: my story of being a "normie" to becoming a cripple, life as I learn to relive it, and the world as I now view it.


1. "cripple, n. and adj.". OED Online. November 2010. Oxford University Press. 22 December 2010 <http://www.oed.com/view/Entry/44529?rskey=bp1GLZ&result=1&isAdvanced=false>.

2. "extraordinaire, adj.". OED Online. November 2010. Oxford University Press. 22 December 2010 <http://www.oed.com/view/Entry/67121?redirectedFrom=extraordinaire>.