Animated GIF. William Shatner as Captain Kirk screaming CANE in place of KHAN.

Wednesday, January 28, 2015

Meet Chuck

I use a walker. Its name is Chuck.

Ask why.

Because Chuck Norris is Walker, Texas Ranger.

Get it? Get it? It's a terrible, terrible pun, because I am a bad person.

Why did I give my walker a name, you might wonder? Because saying "my walker" is generic and kind of depressing while saying "Chuck" is fun and individual. People name their cars, right? So why not name a walker. I don't name my canes, but some of the kids I babysit have attributed magic powers to them. My cane that's covered in stars and moons and comets gives me the power to arbitrarily set bedtimes earlier should children not use their listening skills. It's amazing.

In all seriousness, naming a thing makes it familiar and unthreatening. In many cultures with high infant mortality rates families don't name their children for the first couple of months so that it doesn't hurt as much if it dies. My distant cousins named a turkey they were raising for Thanksgiving but when November came around they had become attached to it as a pet and bought a frozen turkey for dinner. Giving my walker a name makes it more familiar and comfortable to me and, hopefully, others around me.

Photograph: A young dark-haired white woman in a blue sweater making a silly pose while holding onto a Hugo rollator walker.
My friend asked me to pose to show off the sweater I knitted, so I gave her the campiest pose I could along with some good ones. Naturally this is the only one to not be blurry. *sigh*

Tuesday, January 27, 2015

On Offering Help To The Disabled

Don’t ask me if I need help. Ask me if I want it.

It’s amazing to me how the subtlest nuances in language can create vast difference in how we perceive the world around us. This is demonstrated well by cognitive psychologist Elizabeth Loftus whose studies have shown that it’s not only possible to elicit a particular answer through leading questions (ie “How fast were the cars going when they smashed?” vs. “How fast were the cars going when they bumped?”), but that our memories of events are altered by the questions such that a week later two people who have been shown the same footage but asked different questions will remember the events of the footage significantly differently.

So why is this important to civil rights movements? Because how we ask a question can define both how we feel about a person and how that person thinks of him- or herself.

It’s only in the last 20 years or so that being disabled has been recognized as being a valid minority group in the United States. More importantly, it has become more widely recognized that people with disabilities are valuable contributing members of society. If anyone reading this has not done so, I highly recommend reading “No Pity” by Joseph Shapiro. It was written right at the beginning of a series of huge advances in the disability rights movement, just four years after the passing of the Americans with Disabilities Act, and it takes a hard but (in my experience) accurate look at the additional challenges faced by people with disabilities beyond their actual disability.

It’s hard to believe that in my lifetime there was a point when there were no laws requiring there to be cut corners on sidewalks or accessible seating and ramps on public transportation and in public buildings. Even now, 25 years after the passing of the Americans with Disabilities Act, I encounter daily challenges because people have no concept that someone who has become disabled might want to do the same things as before – my friends recently carried my walker down the stairs of a bar because the birthday boy didn’t think to choose an accessible venue. Worse, when dealing with an unpaved street in my neighbourhood (already an accessibility issue) I had to buzz in and then be lead through a massive storage garage to get into the Pittsburgh Department of Public Works. While technically that makes the DPW accessible, it’s more than a bit degrading to have to be brought in the way one would ordinarily bring in a delivery of stationery.

While it has certainly improved in the last twenty years, there is still a stigma attached to being disabled. In previous generations being disabled was essentially a death warrant, or at least a guarantee that one would spend one’s life confined to an institution. People who became disabled would try to conceal their symptoms while family members refused to talk about disabled relatives for fear that neighbours would believe them to be similarly tainted.

Even the words we use to describe people with disabilities serve only to further people’s perceptions the disabled as being almost sub-human. Looking through my thesaurus I find the following synonyms for a number of common terms which ostensibly aren’t meant to be used in this context, but it’s still debasing to be referred to by a term that has these meanings.

Disabled: incapacitated, paralyzed, broken down, wrecked.

Invalid: sick person, patient, shut-in, weak, void, illegitimate, false, baseless.

Handicap: abnormality, defect, shortcoming, burden, liability, dysfunction.

Cripple: paralyze, devastate, make lame, ruin, break.

Sick: unwell, ailing, bilious, weary of, ghoulish, morbid, gruesome.

So what is my point in all of this? I set out to write something about how to offer help to someone who has a disability (or doesn’t! This can work for anyone!), and that’s what I hope I am doing by first putting into context why someone with a disability might be upset or offended by having been offered help, no matter how pure the intentions of the person asking.

Having put up with centuries of maltreatment and decades of assumptions that if one is disabled one is somehow inferior and incapable of taking care of one’s self, along with a history of being denied even the most basic of civil rights, many people who have disabilities resent the possibility that someone is assuming that they need help. This is why words are so powerful.

There’s two ways of offering assistance to a person:

“Do you need help?”

As someone with mobility issues who’s often obstinately stubborn, my automatic gut response to this question is “No! Of course I don’t need help! I am a fully realized human being and while it’s a little harder for me to do some of the things that you take for granted, I am still a distinct and interesting individual not to be pitied by you!” I’ve never said this out loud, but I find myself answering this question 9 times out of 10 with a polite “I’m fine, thank you.”

“Would you like a hand?”

Sure! Thanks for offering! This subtle change in how a simple question is asked has an incredible difference in what it means. You can ask anybody if they’d like a hand because it’s a nice thing to do, not because you think they need it, and to someone who’s had to deal with the assumptions made about people with disabilities, it is a breath of fresh air to be treated like just an everyday average human being. There’s no feeling in asking if someone would like help that there is some superiority/inferiority dynamic between the asker and the asked.

I cannot speak for all people with disabilities, and I cannot promise that all people offended by certain questions will be polite. To me, at least, that tiny change in wording makes such a difference to my self-identity and feelings of self-worth.

I’m curious as to what other people with disabilities have to say about this issue. Please! I encourage constructive questions and comments.

So I Made A Blog...

Hi! My name is Alisa, and I am starting a new blog! Woohoo! Yay! Fanfare and spectacle and all that shit. I’m a 30-something heavily tattooed vegetarian Jubu white chick who likes to write, knit, play with my cat, and bemoan my inability to win the lottery so I can obsessively follow a Dave Matthews Band summer tour around the country. I live in the fair cloudy and frequently inclement city of Pittsburgh and I bleed Black and Gold. I am an alumna of Carnegie Mellon University and, as such, am a gigantic nerd. Seriously, you have no idea. My other blog that I am working on is tracing my family history through the Holocaust and, hopefully, from before then.

When I was 19 years old I was diagnosed multiple sclerosis, a so-far incurable neurodegenerative condition that causes a wide range of symptoms that are as different from person to person as their Pandora playlists. For me I deal with a lot of pain and weakness/numbness, gait problems, and something which is generally referred to in the MS community as “cog fog.” More recently I’ve also been diagnosed with fibromyalgia which can be summarized as “Ow ow ow ow ow sweet fuck ow.” 

I am, as of this writing, in the process of getting on disability. Some days I’m OK, which is when I write. Some days I can barely get from my bed to my toilet, which is when I rot my brain out on Inspector Morse and BBC panel shows. It’s utterly unpredictable when I’m going to feel one way or the other; usually it’s a kind of a funky fug somewhere in between.

The purpose of this blog is to share my thoughts on disability in the broadest sense of the term. What it’s like to be disabled, how societal stigmas affect the disabled and how to overcome these stigmas, and other issues related to the disability community. Constructive criticism is always welcome. Trolls shall have their comments deleted. Or ignored. Or laughed at by my friends as I read them aloud and we discuss what a douchebag you are.

For the record, there are certain issues that I have a firm stance about that, while I am fine with others expressing their views, I am not looking to have my beliefs changed.

Marijuana: I am strongly, strongly for medical marijuana. The narcotic pain killers I’ve been given can cause dependency, plus the wreak havoc on my insides. MJ helps reduce the pain far better than the narcotics and doesn’t leave me feeling as cognitively impaired.

Gender/sexuality: I do not believe in a gender binary, nor in the ability of straight/gay/bi to adequately describe how a lot of people think. I have lots of friends who are non-straight and non-cis-gendered. If you don’t like that, you are more than welcome to read another blog. And when it comes to things like BDSM/kink/furries/whatever… As long is everyone involved in any particular activity is a fully mentally cognizant, consenting adult, really, who gives a shit? Go have fun. Just clean up after yourselves.

Racism: Bad.

Abortion/birth control: It’s ultimately a woman’s right to choose (not the government’s), but I feel strongly that the man should be a part of the conversation. Eugenics is a slippery slope conversation that I’m not comfortable with in part because I’m not completely sure where I stand on it. I’m Jewish. Eugenics makes me nervous. Go away.

Right to bear arms: The United States Government of 1790 did not have assault rifles and machine guns in mind when they passed the 2nd Amendment. Nor did it necessarily give the right to individuals so much as to states as needed for defense of their country. Build more armories and lock that shit up.

Ancient Aliens: Crack. Pure, unadulterated crack. No, I do not believe that aliens came to Earth in the past and shaped our genes so we could build pyramid-shaped energy beams that allowed them to fight vast cosmic battles in our sky because Earth is the most important planet in the entire universe. But the dude with the hair (you know who I mean) makes me laugh every time. That show is amazing.

Kids who wear their jeans below their butts: You look stupid. That is all.