Wednesday, June 15, 2016

Humanity: The Chore

A round stick-person, in darkness, riding on a power wheelchair up a slight grade. In front of him is an arrow that reads "Humanity three days hence."

When we checked into our hotel in Orlando, where we went for a 6 day vacation, I had a decision to make. It's a decision that I have to make any time I'm going to be in a place for more than a day or two. It took me only one trip to the pool to decide that I would go about making the place safe for me to be in. I recognize, every time that I make this decision that it's impossible for anywhere to be completely safe, but I use the word anyway because it simply makes me feel better than the more accurate 'safer'. Once I made the decision I set about the task.

First let's just recognize the fact that being fat and in a power wheelchair simply just isn't a safe way to be in the world. People make assumptions that are both wrong and which lead to toxic attitudes and behaviour. People, unfettered by any social demands to the otherwise, feel free to taunt, ridicule, namecall and even physically harrass. Remember, one way or another, people would rather be dead than be me. I need, if the strategy is to work, to make my humanity evident. I need to crawl up from loathsome and ugly and disgusting and grasp on to my human status, holding on tight until it's established in other minds beyond my own.

I do this by being conventional. I always wear black jeans, no matter what, but I also wear my black shirt. It is a convention set by others, mostly the thin I think, that fat people should wear black. They say it's because it's slimming, I believe, however, they wish us to be seen as in mourning for the person we could have been if only we'd willed ourselves thus. More than that I take every opportunity I can, where appropriate and without being pushy, to greet or to engage in brief conversation with others at the same place. It's surprising what a moments conversation wherein wit, unexpected because they never expect a sharp sense of humour coming from someone they assume dull, leads to a shared laugh. I'm good at this. Very good.

That's day one.

Day two, I wear a shirt of a dull but brighter colour and continue on being a chipper neighbour, a friendly face at the pool, a helpful guy with directions. I find this tiresome because I'm naturally shy, but in order for me to be safe, I have to be seen as fully human by as many people as possible. Anywhere I go there will be people who come in and leave, with no idea of how to react to me besides horror and horribleness, so I need the social disapproval of those I've won over to keep me safe.

That's done.

Then, after two days of that, I have one more day to go. I ensure that people see me in relationship to other people, people they naturally assume to be normal and therefore of value. This is easy when travelling with the kids and their parents, and a little more difficult when it's just Joe. I say 'just Joe' not to diminish Joe, but remember you know that Joe is my husband, they most often see him as my support worker. But I twin myself with them and my value rises even as I pull theirs down. The kids notice this, don't kid yourself, they notice this ... they see their social value fall simply because they are with me. Kids are finely tuned to their status, really very aware.

Then, I'm home free. I can wear what I want, Behave in a natural way, be shy when I feel shy, quiet when I feel quiet and draw attention to myself when I'm fully engaged in something. I've worked to demonstrate my humanity, I gain allies if not friends, and I'm protected by their realization of my humanity and their social disapproval of people who are unflinchingly cruel.

It's a lot of work to be different and to be safe.

In Toronto, where I've lived for a number of years. I have safe places, stores, coffee shops, bars, movie theatres where I'm mostly safe. My familiarity has lead to a sense of me being a regular even though I'm irregular in many obvious ways.

So days four through six were pretty good. I met mostly with welcome, even if grudging from some, and I was able to relax and be exactly who I am. Publicly, I can't do that often, so I enjoyed it.

It's a lot of work to be different and to be safe.

Note: I wrote this Sunday morning, before I'd heard the news about the shooting in Orlando, I shelved it and decided that I couldn't write about my safety from taunts and teasing when a shooter had mowed down over 100 lgbt-a (ally) people in a bar only a few miles from where we were staying. I decided to publish it, even though it's only a few days later because I think the idea of claiming humanity and staking ground is an important one. I wrote this here in a disability context, I was thinking of it in a disability context, but it's also how Joe and I have survived as gay people and a gay couple. By claiming humanity and staking ground, we made our way forward, we made our way proudly and we made our way through dark, dark times. It is my hope that this will not seem trite or as if I'm trivializing the horror of 'the Pulse' massacre' ... please remember it was written before, without knowing. 


Frank_V said...

I have the opposite problem. You get run over emotionally, me, physically. Being so small, at 4' 6", I'm most often unseen. So much so, people constantly run into me.

I stake my ground by adopting a wide stance with my cane and hiking staff. Because it gives me the most powerful stance to avoid falling, AND, offers the best chance of tripping people who rush about without looking.

I do this not to be mean, but to be safe. If they trip, that's on them.

Mare said...

This is great. All people have to negotiate their identities in the world but like the heterosexual assumption most never think about it. As a person with a disability I think about it all the time. I have been watching how I do it, using humor, making questions ok and generally working to reduce the anxiety of the non-disabled people I interact with. I had never thought of it in terms of making it safe but that is a great observation. I'll add it to my identity toolbox.
thank you.

Unknown said...

i actually think this is a very good description of the process that you use to build safety for yourself in an unwelcoming world. i have never seen it written out so clearly, but i think it is very accurate...and sad.....
and I realize that those who do not have a visible difference will read this and not have any idea what you are talking about. clairesmum

Namaste said...

Thank you, Dave. This explains to me why the gentleman I support on the weekends says some of the things he says while we are out in the community - to get others to see him as "one of them". I just play along with these comments and because of them, I refuse to wear the scrubs that scream "SUPPORT"! I am very glad to have an answer to "why", but I think I knew the answer all along. Appreciation for showing me the light.

Alicia Butcher Ehrhardt said...

I make sure the snippy clerk behind the counter who sees a disabled fat woman knows she is supposed to address me as 'Dr. Ehrhardt.'

I feel fake sometimes, entitled others, but it always helps.

I say, "I'm Dr. Ehrhardt; Mrs. Ehrhardt is my husband's mother."

I say, when addressed by some snip who is a third my age by my first name, "And it's DR. Ehrhardt."

When I was one of only three female physicists at PPPL, I always used my title on the phone - because otherwise the person at the other end ALWAYS assumed I was the secretary - and that gets very tedious.

Once we are acquainted, and friendly, if warranted I'll say, "Call me Alicia." It's MINE to grant, and I respect other people when I always address them by title first, and let THEM tell me if they wish to be addressed by their first name.

It grates on my nerves immensely to see older women in a hospital or nursing home being addressed by their first name by people who ASSUME. It infantilizes them.

Whatever you need to be seen as an individual, with rights, with personhood - not someone their stereotypes can just aggregate into 'them' - is what you need to do.

It hurts for you to have to do what you do. I know it probably doesn't help much, but each of the people you educate won't see the next, shy, disabled person as a lump of 'them.'

But it IS exhausting.

h smith said...

Talking or writing about one issue doesnt trivialise other issues and its more honest to keep talking about how things are than to pretend these everyday issues dont matter because people have been killed. Every time you write a blog post there are people somewhere in the world getting murdered, brutalised, terrororised and tortured, often on mass in countrys our western societys dont really care about because theyre not *us*. And that happens because some humans dont see other humans as humans, so todays blog past is super relevant at this time. It shouldnt be on any of us to have to work so damn hard to be visibly human, our collective societys should be carrying that weight in a healthy world. But it doesnt.

As someone who spent the majority of my adult life 'passing' as a non disabled person because my appearance didnt give my disabilities away, and then becoming first a wheelchair user and then a care dependant powerchair user I can hand on heart say that the difference in my social value, interactions, relationships and how I'm seen and treated pre and post visible disability is sickeningly obscene. I havent changed. I'm the same, albeit psychologically broken and traumatised now, person that I was when I entered a room on my feet and cooked my own dinner, raised a child, worked full time as a respected employee and had a full, active social life with interesting conversations and enjoyable company. Back then I was allowed to have and express thoughts, feelings, perceptions, emotions etc, I was even allowed to be an irrational, hormonal, sulky, naggy, unpleasant cow sometimes because people accept thats part of being human. I was allowed to make bad decisions, take risks, fail and screw up because thats seen as part of being human. And I was allowed the autonomy to decide what did and didnt work for me and my life, to make plans, to succeed and to thrive because why wouldnt I be as an adult. But all of those things got ripped away from me when I became a less-than-human visibly disabled person with *support needs* as opposed to *human needs*. And I've been forced into a position of putting everyone elses needs and comfort, including strangers, above my own, constantly and relentlessly, and to bury my anger and resentment and, well more anger about that.
I hate my life to the point that every day I have to fight to find a reason to keep living.

And the main thing that keeps me going is knowing that if I did give up everyone would assume it was because I couldnt stand to live with the increased disabilities I have, just like they would 'rather be dead' than like me, but its not that at all. Being so disabled is frustrating, painful and practically difficult, but so is life in general and being disabled doesnt exclude all the good parts of life that go along with the rough. But being disabled in a society that devalues, dehumanises and abuses you because of that, is a life destroying thing that absolutely makes people feel like life isnt worth it anymore. In large part because of the amount of energy and sacrifice it takes to be in this hostile to us human society even vaguely safely. I hope that changes for future generations

Alicia Butcher Ehrhardt said...

h smith, What you write about here is why I have spent all my good time for years writing a novel.

You write well - have you considered using that to make your points to a wider audience? I just published my first novel, and this kind of themes - who are we allowed to be, what are we allowed to want and get - are interwoven with all the rest.

Able-bodied people who don't understand can't write what I've written. NOT inspiration porn. Real fiction, where disability is only a part.

h smith said...

Hi Alicia, whats your novel called please? I'd love to read it. I haunt Daves blog and a couple of others to draw some weird kind of strength from hearing that its 'not just me' and that other people understand what its like, so a whole novel would be great to read.

I *was* a writer pre-wheelchair, I wrote for touring theatre companys and educational theatre, mostly about social issue stuff, and as an advocate for disadvantaged people/groups, among many other things that youd think would mean I'd be able to protect myself from ending up in the situation I'm in. But nope. Crafting with words used to be my 'thing' and I was good at it and respected for it. But now my written words are as dismissed as my spoken ones, and even resented by the statutory services and paid support people that make up 99.99% of the human contact I have these days. I rarely have energy or ability left to write for a wider audience, and my words feel strangled in my minds throat because of how disempowered and hostile-y received they've been over the past five years. Its a 'writers block' that I dont know how to get past anymore :(