Questions I get tired of hearing, Ability Edition.

Hey folks!   It's a pretty day but I'm in pain, and as much as I want to work hard all the live long day, it doesn't look like I'll be able to get much done in the way of craft stuff.  I'll get a proto card done but not much else.

Anyway, it occurred to me while I was skimming FWD-Feminists With Disabilities that I suffer a lot of the inconveniences of ablism, even though I can pass as an able-bodied person if I put in the earth-moving effort.  Unfortunately I also get the questions a fit-looking person gets that a more obviously disabled person might not.  I'm going to share some of those questions with you, just so you both know what I find frustrating and also so you know what not to say to other similarly mobility-challenged folk.

1. Can't you take the train?

I know, it's a pretty simple concept.  You just walk to the station, hop on the train, the train does most of the work, right?  No.  Wrong.  I don't think people, particularly people who drive, quite understand the huge amounts of walking required to get from point A to point B when a train is the main mode of transport.   Let me explain my particular situation to you.

I live roughly 800 metres from a train station.  My house is on the top of a smooth hill.  It's not a particularly steep incline, but it's a LONG incline.   The last half of the walk from my Gran's old place to my house requires vigourous strides, even if you're healthy.  

And that's just getting TO the damned station.   That's nothing of where I get to sit on the train.  If it's the middle of the day, there's a good chance that I get to sit down.   But if it's during rush hour, or schoolie hour, then there's some serious problems.   What if I need to sit down and the only place to sit is the mothers/old people/disabled people spot?   I don't look disabled.  If I sit there, you can bet I'll get the evil eye.  I might even get questioned by a transit guard, and then there's the fun situation of explaining I'm on the disability pension, and pulling out my card.  And you know, it's so FUN to discuss the details of my health to a complete stranger.

And trains, you see, it's funny.  They don't stop in front of the door of the shop I'm after.  There's a lot of walking from the station to the particular mall or shop I need to go to. 

"Can't you just walk slowly?" I sometimes get asked.   No, no, it doesn't matter how fast or slow I walk.   I'm a half-charged battery.  I can't do as much as a fully charged battery can.  I have to pick and choose what I do every day.   Let's see, walk to the station, then into the city, to buy something frivilous and enjoy my day out and then end up sleeping 18 hours, or have a day where I can shower, clean the house a bit, do my daily routine, feed myself and then manage to get some shit done?  I'm not being facetious or funny.  If I go walking - I don't have the energy to make myself lunch!  And I have to make myself lunch, because I'm gluten-intolerant.   Most of my food has to be made from scratch.

It's times like this I fantasize about having a scooter or a segway or something.  I think about how I'd go shopping and I wouldn't be limited to my house!  I could go to the lake and draw pictures of ducks and swans!   I could go to the zoo and stay there ALL DAY!  I could visit friends in Nedlands, go for coffee in Claremont, pop by the pool whenever I wanted and get the swim I so desperately need so that I don't get unfit.  Unfortunately, I'm on disability.   I can't afford it.

2. Do you get out enough?

Cousin to, "Nancy, you don't get out enough!"   You know what?  I know that.   And the answer is "No".   Of course I don't get out enough.  I'm a reasonably healthy, vital, intelligent woman in my early 30s.  I stay at home most of the time.  Of COURSE I don't fucking get out enough!   Don't you think I know that?  Don't you think I wake up every single bloody day and wish that I could just do the things I used to do? 

I have dreams where I need something, so I go shopping for it.  On my own.  On foot.  Like I used to when I was in my early 20s.  I usually dream about things I really, really want but I know I can't have right at this moment.  Boyfriends.  Babies.  Putting on glamourous performances for huge audiences.  Or, you know, going shopping for art supplies or clothes when I feel like it.

I desperately need new clothes.  New jeans (my old ones are baggy and loose on me), a cardigan or two (it's hot/cold month), and some singlets.  Can't afford 'em - on disability.  Can't GET to 'em - they're in Perth, and my Dad would never, ever take me there.  He doesn't like me spending money.   This ties in with question one - no, I can't take the train to do this.

It also turns out that I miss a lot of parties because I'm too sick to go, or I can't get a lift there.  Dad is an old man, I can't keep asking for lifts from him.  I have sometimes gotten the bravery up to ask for lifts from people, but believe me, I feel like a total asshole for it.  So my social life suffers.  It sucks.

3. Can't you learn to drive?

See, I've gotten into arguments over this one.  I'm really, *really* reticent to get into a car, behind the wheel that is.   Never mind the fact that, being on disability, I can barely afford my own gluten-free food, let alone fuelling and upkeeping a car.  I can barely cross a street without nearly getting hit.  I have really bad peripheral vision and the attention span of a two year old.  Also, having dyscalculia, I have a hard time remembering rules, which is very, very bad when one is learning to drive, because those rules stop you from, you know, getting yourself KILLED. 

I'd love to give it a shot, I really would.  Sign me up!  But I have a feeling that I won't get onto the road, I'll stick to the car-park.  Cause I can't even play Grand Theft Auto without crashing into things.   I also suck at gauging distances.

4. Should you be taking so many pills?

Cousin to "Careful!  You'll end up like Heath Ledger/Anna Nicole Smith/Judy Garland/Dead Celeb of the Moment!"  This is another I've gotten into big arguments over with various relations.  They're worried about me, I know, God bless 'em.   But there's a terrible reality to my life that people don't really seem to understand.   They say they do, but if they understood, they'd not say these things to me.

I'm in brutal pain every day.   I wake up in pain.   I go to sleep in pain.  If I pee, sometimes the pain gets worse.  If I don't pee, the pain gets worse.   It hurts to move sometimes.  And it's frustrating because I have these big, big plans in my life.  Art, music, writing, you name it.  I want to do it.   Yet I sit there, in the lounge, on the couch, drowning in pain.

The one thing that makes it livable, the one thing that gives me a window of opportunity to get shit done, is those blessed, damned little pills.  I don't like taking them, really.  I have to keep remembering to take them and the opiates really do leave me feeling dopey as all fuck.  But then the dopey goes away and for a couple of hours, a few if I'm lucky, I have energy again.  I can DO things.

I'm addicted, yes.  I'm addicted to the brief bit of time where the pain is a shadow of its regular self and I can soar like a fucking eagle, and be the talented, able, awesome woman I was born to be.  That brief period of time when I can practice my art and do what feels like breathing to me.  In that span of time, when I get shit done?  I don't feel useless.  I don't feel like a burden.  I don't feel like a lump.   I feel like there's a reason that I'm here, and that I'm doing something good in the world. 

All because a stupid pill masked the pain for a couple of hours.

I know it's damaging my liver and kidneys.  I know I'm not supposed to take it long-term.  I know that's it's dangerous and it scares the fuck out of me.  But I have *no choice*.   It's either that or live in perpetual agony, wishing I could do things, watching the minutes of my day slip by, knowing I *could* be doing things, but I can't because it hurts too much to move.

I talked to my doctor.  I planned out my pill regime.  I've tried every pill my doctor can think of, and I've found the ones that work.  I'm an adult, and I know the risks.  But the benefits make it worth it. 

5. Can't you push past the pain?

No.  No I can't.  The thing about endometriosis pain is that it's not like regular pain.  It's very, very resistent to being ignored.  It's also very resistent to being masked by pain relief, hence why I have to take opiates.  It's both exhausting and debilitating, this pain.  I am not lazy.  I am not unmotivated.  I am disabled.  This pain takes my ability away.

I've tried pushing past the pain.  Don't you think that, if I could push past it, I would be stuck at home day in, day out?   Plus there's the little thing of why should I suffer it in the first place if there's a way of alleviating that pain?  What is the sense in torturing one's self when the technology and the medicine exists to make life that little bit easier?   What is it with our society that getting help for a disability is seen as a bad thing?  As a burden?  As a chore?

What hurts me the most is people I love don't trust me.   They don't trust me to know my own body and to know how much is too much.   If I tell you that I'm too sore, or that I'm tired, or that I don't think I can do something, again, it's not laziness or lack of motivation on my part.   It is an intimate understanding of my body and what I can do. 

They also don't trust me to tell them the truth about my pain levels.  That hurts more than the endometriosis does.

In conclusion:

If you know someone with either a disability or an invisible disability, think about some of the things I've said today.   I'm okay with being open about my condition, because others aren't and I know that education and the dissemination of information is the best thing to do against ignorance.  I challenge the privilege and open up myself for criticism because I have the strength to, and it saves other people from having to do it.  I'm okay with that.  So feel free to ask me questions.

The easiest thing to do in regards to what to say to someone who is differently abled is to stop and think about what you say before you say it. I mean really stop and think.  Put yourself in their place and think about their reality.

A.N: the icon is meant with sincere affection.