Ableism...

A while ago, I read one of Michelle's posts, This is NOT funny. on her dysautonomia blog Living With Bob that has troubled my waters quite a bit.  In it is a meme (I loathe that new words are made up willy nilly these days) that could have been me.  And in it I learned a new word: ableism.

Apparently this meme had been making its way around Facebook and her post is about how it is NOT funny; it is actually rather insensitive and cruel.

This has been me on more occasions than I could note.  Using the motorized wheelchair shopping carts is a necessity for me now.  Sometimes, I will lean atop a regular shopping cart and exhaust myself to "prove" I can still make my way around a store.  But I pay such a high price for doing so.  It's really rather stupid of me.  But even when I am sensible and use the wheelchair shopping carts, I have to stand up and reach for things all over the store.  Stores are not all that accessible.  Upper shelves are too high, displays and racks are often place too close to allow for wheelchair maneuverability, and you cannot open a refrigerated or freezer section door while sitting in a wheelchair.

When I was at Lowe's yesterday, this was the only available handicapped spot.  I did NOT find the careful alignment of carts in there funny.

Ever since reading Michelle's post, I have thought about ableism.  Trying to define the word online was/remains a bit problematic.  This may sound like a far stretch, but it was like trying to define feminism.  Feminism can be viewed so utterly negatively and holds various connotations depending upon to whom you are talking or referring.  But is not feminism, at its heart, about the idea that women should not be second class citizens, as they have been for much of human history.

I think about ableism when it comes to so many things and places in this world that assume an able person's strengths and abilities.  For example, bottled condiments and medicines and the like have an inner seal beneath the cap.  The seal makes them tamper proof.  It also makes them difficult and even dangerous for folk with weak hands to try and pry off.  I usually go poking at them with a knife and try to wedge them up.  Nicks in my fingers is oft the result.  Now, some manufacturers have started providing a clear lift tab.  I give thanks each time I discover one.  But they are few and far apart.

The caps, too, can be difficult.  Many are childproof.  But that also means that they can be disabled adult proof, too.  Trying to squeeze and turn or see the arrows well enough to line up before squeezing and lifting is hard.  For my prescriptions, I have signed all the appropriate forms and releases to have regular caps on my bottles, but the majority of the time, I get the childproof ones.  It is not uncommon for me to spill most if not all of my medication trying to open the bottles.  For that reason, for many years now, the bulk of my medications are in glass bottles that have cork lids.  I learned the hard way, however, that if medical personnel enter your house, you will be prevented from taking any medication that does not have a label on it ... including inhalers, which are most often labeled on the box, not the mechanism.  Still, knowing that particular danger, I use the glass jars.  Only I don't have enough, so I leave my bottles open.  And I knock them over when I am filling the weekly container.  The whole situation is frustrating and highlights the losses and illness I am facing.

Today, in the mail, I received a demand letter from the state tax department.  Actually, I have had trouble with all four returns thus far.  I do not pay the extra money for e-filing, so I print and mail them.  Always, something I report is declared wrong and I get a demand letter for payment, including penalties and interest.  Each time I have proven my return by providing the very same documentation that was mailed with the return—but not scanned into the state tax system—and my account is zeroed out.

This time, the state tax withholding from the retirement account that was reported on a 1099 was rejected as not being paid.  I just cannot figure out how that could be possible. I  mean, it is reported to the federal and state government and paid to the federal and state government under my social security number.  Did my state just take that $1,750 as a generous donation from TD Ameritrade??  What's more disturbing is that the letter is not kindly written and threatens more penalties and interest if not paid in 20 days.  I think a lot of folk could be frightened into paying again instead of thinking to print out the 1099 and provide proof payment has already been made.

As tired as I am after yesterday's labors, I still could not stand waiting until next week to address the demand letter.  It makes me anxious and worry.  The burden of What-Ifs is not something I wish to bear.  I could have just mailed the proof once more, but I would have needed to go to the post office to prove that I mailed the proof and it is easier (and cheaper) to just go to the tax office.  Each year I have had difficulty standing at the window, but this year I noticed that if I had come inside in my wheelchair, I would still have had to stand to reach the window.  The state tax office was not accessible in any fashion. I had to go up over a curb, up steps, and through two doors that did not have automatic openings just to reach that counter.  Each of those makes my journey more difficult, more tiring.

So many doors I have to pass through are both heavy and lack automatic openings.  I will use my cane as a stop to hold open the door and then try to scoot through past the cane.  More and more I think about how even places such restaurants lack the most basic of accessibility helps: an automatic door.

But, to me, ableism is about more.  It is the idea that little thought is given about the needs of those who are not able because the tacit understanding or societal MO is that accommodations are the burden of the disabled, not the abled.  And I do not believe that is right thinking.

Before, when I have pointed out churches without accessibility features, churches where I have found  no ramps or automatic doors or seamless flooring or even raised toilets, the cost of such things is always brought up.  At one church, the thinking is that it is just easier to carry the wheelchair bound folk up and down any stairs or across any thresholds.  Would you like to be carried around?  I certainly don't.  In those churches, caring for the needs of neighbors were prioritized against the disabled, in my opinion.  There was not enough value to even put in an automatic door.

At my church now, I have two choices, should I go:  1) The front entrance, which is a very, very long walk from car to even just the last pew in the rather large church or 2) The back entrance, which is often locked and does not have bulletins with which to follow the service (which means even more walking if you want a bulletin).  In both cases, were I to go and desire the Lord's Supper, the length of time it would take the pastor to come to me in either location is almost the same as serving an entire row of folk at the pew with lots of turning of heads and staring.  Him coming, though, is much quicker than my going.  SIGH.

Think of the symphony here.  Most of the attendees are elderly.  There is, at the Embassy Theatre, exactly one handicapped space in the very back on a side street.  When the performances are over, the front sidewalk is literally filled with folk in wheelchairs and those using walkers or canes, waiting to be picked up.  The wait can be about 20-30 minutes and there is not a single bench outside.  No seating to be found anywhere.  The few times I have had rides, I have found myself jealous of those who had wheelchairs.  I wanted mine.

Today, when I dropped off my written prescriptions (something I keep forgetting to do) on the way back from the tax office, I sat down on the floor because of the line in front of me.  There is seating near the pharmacy, but there is no way to sit on a bench a couple of aisles away and keep your place in line.  The three people ahead of me all kept turning and staring at me.  Once, I could understand, but repeatedly was uncomfortable.  That was the point, I believe.

I sit on the floor in lines at customer service counters, at the post office, at pharmacies, or any place where I am forced to stand for any length of time and there are no chairs provided.  I went through the rigamarole of reporting the main post office here for not having an handicapped window, but nothing has changed.  There is no way that someone in a wheelchair can be served there without another person helping.  The last time I asked to speak to the manager there about the matter, she refused to come out of her office.  I tried to speak to her because I was heckled by other customers for sitting on the floor.  I made them uncomfortable.

So, in a way, another way I view ableism is that I am oft placed under the burden of making others comfortable with my illness or my condition.  That is just wrong.  Period.

Usually, when sitting on the floor, I ignore the heckling.  The last time, with it being hot inside since the post office has fans for the clerks but not any cooling for the customers, I was peeved enough to ask to speak to the manager once more about the sign on the wall that labels a handicapped service window but is not actually next to a handicapped service window.

For the painting, I tape the brushes to my hands.  I just cannot hold them they way that I used to be able to do.  I cannot open a milk carton without a fork to pop off that serrated ring that holds the cap in place (I used to use knives, much to my detriment, before I realized a fork would work better).  There are jars of food that I've had to wait for Firewood Man to come to open all because they are manufactured with safety in mind.  Safety features that are primarily barriers for me.

When I first read Michelle's post, I rejected the word "ableism" outright as just another entitlement movement.  But the more I think about how the world is set up for the abled, when small adjustments could make the world of difference for someone like me, the more I understand just now NOT funny that meme is and how very important (and brave) it is for her to write, as she has before and since, about the ableism battles that make facing her chronic illness more difficult.

My life, dealing with it, struggling to remain independent, is made more difficult because so much of it assumes that I am abled.  And I am not.

To be honest, too, the meme makes me uncomfortable because I wonder what I have laughed at myself that was NOT funny.  That woman who wrote about the Dead Dad's club was right in that if your father has not died, you cannot understand.  Maybe the idea of ableism is something that you cannot understand until you find yourself disabled and battling things like trying to open your medication.  Or a gallon of milk.  Or walk through a door.  Or wait in a line.  Or try to get to the sanctuary in a church.

Most of the time, I have no words for how I feel, for what I think, and for the struggle my father's death has been for me.  Not being acknowledged in his will ... not being remembered ... is one of many things I do not think I could communicate with any clarity.  The idea of ableism, the plethora and myriad things that are obstacles of feelings, thoughts, and physical battles simply because I am a disabled person trying to get about by herself in a world set up for the abled, seems equally too big and too nebulous and too unimportant to anyone but me to speak about with any sort of clarity.

I do wonder, though, if I posted that photo of the handicapped parking spot at Lowe's, just how many folk out there might find it to be hilarious and the inspiration for another NOT funny meme.