On Accomodation

Unless you're new here (welcome!) you've probably seen me whine about my horrible boss. He redefines asshole for a new millenium, but he is a family man. So, even though he's cut sick days completely and is forcing me to work 2.5 hours per week for free, he does make allowances for parents in the office.

Specifically, there are two secretaries that have children of school age and both are given what I would call accommodations. One is allowed to leave early to attend her daughter's sports games, the other leaves at 3:00 every day to pick up her children from school.

Some people in the office complain, rather bitterly, that these two are "special" and get "privileges". I don't see it that way. They have children. Those children require certain things of their parents, my boss is allowing the parents to provide those things. I don't need to leave early and when I do go home, nobody's clutching at my leg and wailing or asking me for $20 after telling me they hate me. (Children, they're awesome!)

This is how I see all forms of accommodation. Sure, people with handicapped tags get the cool parking spaces. You get to walk. I guarantee you you wouldn't trade for all the best parking spaces on Earth. Hey, Christians, do your Muslim coworkers get to take several breaks to pray*? Well, you get all your important holidays off without even having to ask! How cool is that?

Look, here's the thing about accommodation: yes, the person being accommodated is getting something awesome that you are not, but it's in exchange for their life being significantly more difficult in some way than yours. Persons with blindness get to bring puppies into restaurants- they also can't see the restaurant. Persons of colour can get into college with lower test scores**- and nobody ever assumed you were in a gang simply because of the colour of your skin.

Does that help any at all? I realize the analogy isn't perfect, but just a bit? Maybe?

*I have seen this complaint. As if anyone's having fun while they pray.

**I could write a book on why those test scores are lower, but I'm just going to say Racism, it's endemic! and leave it at that.

We're Just Here to Make You Look Better

I keep seeing these blog posts and articles that I think are meant to encourage people to keep rather than abort a fetus with Down Syndrome. They don't push other disabilities for some reason. I guess Trisomy 21 is the sexy disability these days. Seriously, for every one child with Down Syndrome adopted, there are 300 people waiting to adopt such a child. Meanwhile, there are thousands and thousands of children with disabilities languishing in foster care who will never be adopted.

Does that strike anyone else as being a little . . . odd?

Anyway, back to my original point. I keep seeing these blog posts that give the following "purpose" to the disabled:

In the fictional novel The Clowns of God by Morris West, Jesus comes back to earth, and some people think it's Him while some don't. At one point, Jesus is at a school for children with Down syndrome, and He is holding a little girl. Jesus says:

"I know what you are thinking. You need a sign. What better one could I give but to make this little one whole and new? I could do it, but I will not. I am the Lord and not a conjurer. I gave this mite a gift I denied to all of you -- eternal innocence. To you she looks imperfect -- but to me she is flawless, like the bud that dies unopened or the fledgling that falls from the nest to be devoured by ants. She will never offend me, as all of you have done. She will never pervert or destroy the work of my Father's hands. She is necessary to you. She will evoke the kindness that will keep you human. Her infirmity will prompt you to gratitude for your own good fortune... More! She will remind you every day that I am who I am, that my ways are not yours, and that the smallest dust mite whirled in the darkest spaces does not fall out of my hand... I have chosen you. You have not chosen me. This little one is my sign to you. Treasure her!"

That seems nice, doesn't it? It's so sweet. God made you a perfectly imperfect child to remind you how awesome not having extra chromosomes is. I bet god puts people in wheelchairs to remind the walking how really great that is. I'm in pain all the time to remind all of you how truly special it is to not be in constant pain.

Because when you're disabled, you're only possible purpose is in relation to the abled. We're always secondary to you. We couldn't possibly be a purpose in and of ourselves. Not like the normals. (Whom we're stealing all the good parking spots from. Because we're selfish.)

Nobody questions why children exist- unless they're disabled, and then they need a reason.

Remember what was odd above? People want children with Down Syndrome, but almost nobody is deliberately adopting children with autism or sensory disorders or debilitating food allergies. Why is that? Two reasons, I would guess. For one thing, Down has an ad campaign at this point. For another, Down Syndrome is an obvious disability. All you have to do is look and you know. You couldn't tell, however, just by looking that little Billy has a sensory disorder and is at the end of his ability to cope, rather than just a brat having a temper tantrum. Then you go from being the Greatest Parent Evah!- so self sacrificing!- to the Worst Parent in All of History- Shut that brat up!

It's disability as accessory, and let me tell you, as a person with an "invisible disability", I have seriously considered carrying around a cane. Not that I really need one (some days I could certainly use the help, but not often), but so that people would look at me and immediately know I am not completely able. No more eye rolling, no more snap judgments, no more accusations of faking it for drugs or attention. Yes, in certain groups, canes and wheelchairs are enviable.

Disabled people do not exist to teach a lesson to abled people. Disabled children are not born to provide the abled with patience or selfless love or acceptance for the different among us. The disabled do not exist only in relation to the abled. We simply exist. Just like you.

You can stop turning us into motivational posters any time now.

Not Responsible Enough

I was watching Real Life in the ER this weekend (I think that's the title of it), in which real ER doctors recount their most amazing, amusing, puzzling or just plain interesting stories. The story is reenacted by actors, but sprinkled throughout are interviews with the actual doctors. Mostly I watch it for the "how could anyone survive that?" element (a screwdriver through the skull, a tree branch from anus to diaphragm, etc.).

The episode I watched this weekend included the story of a mentally ill homeless woman who arrived in the ER, in the middle of a breech birth, completely denying that she was pregnant. The doctor, a resident at the time of the story, recounts how he delivered a breech baby with only basic textbook knowledge of how it's done. Then he starts to reflect on the miracle of life, the circumstances the child faced, and said this:

I mean, his mother wasn't even responsible enough to know she was pregnant.

Um, what? "Responsible" was really the word you were looking for, doc? "Responsible"? We're talking about a mentally ill homeless woman. Mentally ill. As in sick. As in, that woman with food poisoning wasn't responsible enough not to throw up. That diabetic isn't responsible enough to produce insulin.

Responsible was not the word that doctor- doctor!- should have been looking for, but I bet that's exactly what he meant.

I encounter this attitude all the damn time. "Ugh. Why do I always have to help you open jars and carry things? It's so annoying." Because I'm not strong enough to do so. I'd like to be stronger. This annoys me, too.

"Why are you always dropping things? It's like you do it on purpose." I have carpal tunnel. I'm losing the feeling in my hand. This is worse for me than it is for you.

"Why did you do that?! Why did you fall over- you almost broke the TV!" And my arm, thank you. I have problems with my balance. I think I'm straight, but I'm really leaning to the right and . . .

Fuck you. You know I'm sick. I've explained this to you. Figure out what that means and leave me alone. And take your responsibility with you.

I Do Know My Limits

Starting today there will be a notable pause in posting as I go to the Wedding Extravaganza Amongst the Beautiful People(tm) (hereinafter referred to as "Wedapalooza"). Wedapalooza stretches over 2 days, is 4 hours away from me, will require 3 wardrobe changes. Day 2 will start with a lovely array of sporting events to choose from, in the South, in June, and will end in a "cocktail dress" reception. I'm sure you can imagine how very thrilled I am to attend.

From a financial standpoint, Wedapalooza is particularly cruel to the poor in the family, as it requires hotel stays and three new outfits per person, not to mention the traveling, but that's not what I'm blogging about. What I'm blogging about is what I will endure as a chronically ill person: that special ability the able have wherein they are better qualified to discern my physical state, needs and limits than I am.

If you are disabled/chronically ill, you know exactly what I am talking about. The gluten allergic person who refuses food that will make them violently ill is accused of being rude to the cook. The pain patient who excuses themselves to lie down after a too-full day is being lazy or rude to their companions. The person with social anxiety who needs to separate from the crowd in order to stay calm is being ridiculous and needs to get over it.

I live in this body. I have for over 34 years. I am not new to this illness. I know what I need. I know what I need better than anyone else. I know my limits and I sure as hell know when I've gone past them. If I say that I need to rest, that has everything to do with me and nothing to do with you. I am not being rude, I am not being lazy, I am not being selfish. I am doing what I have to do to maintain my health.

I'm sick of being told that I am "no fun" or "ridiculous" or "jeez, it's always something with you!" Yeah? You think it's rough being related to me? Try actually being me. Try it for 5 minutes, I dare you.

Try to imagine, if you will, that you are on a car trip, as a passenger. You have to pee. You tell the driver that you need to pee, please pull over at the earliest opportunity. Imagine that the driver tells you that you are being ridiculous and rude and you need to get over it. That's what I feel like.

So, trust me, I know how I feel, I do know my limits, and you need to respect that.