Monday, March 05, 2012

‘Hacking’ Disability Style

‘Hacking’ isn’t breaking into computers, or NASA databases, but is a way of viewing the world as a series of systems, ones in which holes and loopholes, backdoors and overlaps are viewed and exploited.

I have lived by the ‘hack’, buying cases of soda and chocolate bars which I brought to my first summer camp, and sold at a 12% markup. Because I wasn’t selling soda for a $1, but 35 cents, the counselors couldn’t say I was ‘exploiting’ other campers. I said I was providing a service, and the senior counselor said they couldn’t see how I was making a profit at all. But I was making just enough so that I could have soda and a chocolate bar and end up with the same amount of capital as when I started. If I had tried for more profit, I would have been shut down. I was a ‘good girl’, and though they couldn’t figure it out, they let it continue. That was my first hack.

By the time I was in Grad School, I was clearing six figures annually on DVD’s, all with the motto of “7% net minimum.” It wasn’t a fortune, but it was enough to pay for grad school, some bills, trips and have any DVD’s I wanted for free. I played Amazon and ebay off of each other, riding the wave of what was hot, what was out of print, and what was wanted.

Helping people find what they want, and being there to help them is a form of ‘hack’ as well. We are a product of our likes and dislikes, our society and the influences of friends and family. Each person, each city, each country, each society has a ‘hack.’ Gandhi created a mirror for Britian, realizing that the ‘Englishman’ firmly believed they were doing good, and if they saw themselves doing the opposite, they would have to stop. His actions inciting the British to see themselves as lawless thugs ‘hacked’ the British Empire and freed India. The same actions were crushed by China, who saw themselves differently, as did France in Algiers.

The greatest hack is that of the mind. My actions in doing boxing, volleyball, badminton, tennis, 10K’s, and travel in countries deemed ‘inaccessible’ or ‘disability impossible’ were not for the public but for those who I saw and talked to with different disabilities who had decided what was and was not possible. I wanted to ‘hack’ the premise that ‘I can’t do ……’, the decisions about outcomes made before even trying. I was trying to ‘hack’ the disability community, and remind them that they had choices, ones they should not let others take from them, or give away themselves.

When it comes to the general public, I think so much I can’t sleep and yet, I can’t come up with a way in. I’ve tried to convince all people that wheelchairs are simply mobility devices, and yet neither the able bodied nor the disability community believe it in their heart. For both, the wheelchair is a signifier of far more than a way to get to from point A to point B and for the majority of users, a choice. Nor can I seem to convince those who fantasize or turn the wheelchair and users into objects of fetish that they can use it, as can any person at Disneyland, most large malls, or for $250 for an A4 from most medical equipment stores. It isn’t a sign of the ultimately dependant female, the maiden in distress, the ‘safe’ male, or a person more anything than the general public. It is simply a rather inefficient and often awkward way to get from point A to point B; but for those who use them, still the best alternative.

And as to the general public, who in the Amazon #1, and bestseller graphic novel Batman: The Black Mirror; as with so much mass media, the mirror shows that nothing is more terrifying to people than amputation, being a paraplegic or a quad. A neuromuscular degenerative disease is seen as only unending horror, not an education, and those with dementia portrayed as already dead, which is why we have not talked, not shaped, not seen or understood the neuro-diverse viewpoint dementia brings.

There are those who try to show that by working harder than others, we are just like them, without realizing the paradox enacted. To do something dramatic, only reaffirms to those able bodied that they could do that as well, but that it is amazing that ONE disabled person did it. The systems set up treat us like school children, where deciding what is best for us is not a loss of ‘equal rights’ but being a good person. If you don’t believe me, try the ‘escalator trick’ (riding up an escalator by flipping your casters onto the step ahead and holding on to the sides) and watch people freak. Listen as guards or staff tell you that you ‘can’t do’ what you obviously just did, and what no rules are posted forbidding. I did that to get up to the Science Fiction today as we shopped at Chapters, as they were having buy 4, pay for 3, sale.(I got a tattoo/fetish magazine, linda got wildlife photography).

Saying ‘I hope your children are/will be disabled’ is seen as an insult. Parents may say with a ‘knock on wood’ look in their eyes that ‘I wouldn’t MIND if my child was gay.’ But there are no, ‘Hope your son is gay’ cards along with the ‘Hey little Football player’ birthday cards for boys. But no parent will say, ‘I wouldn’t MIND if my child was/will be disabled.”

That is ALWAYS considered a tragedy. And ‘equal’ might be written on the books, but not in the minds, or hearts.

I don’t know how to ‘hack’ that. I don’t even know where to start, so culturally universal, so pervasive is the idea that nothing good comes from disability or illness except the determination to either try to be as others are or to not ‘give up’. But even for those who reach the levels they did before, it is the actions which are equal, not the person: they are always going to be damaged.

I might have a shorter life, but I am a better person because I got ill. I am, I think, a more mature individual, a more empathetic, more accepting, more aware of my own engrained biases and able to work to overcome them because I am disabled. Even in my sore mistreatment by various organizations or individuals, I have come to realize how fortunate I am.

I will continue to seek the ‘hack’, which alters the premise of people, or transforms the disability ghetto (with 80-90% unemployment in Canada) into a place where individuals’ value can be seen, recruited, and society changed.

I believe that a ‘100 list’ of the top corporations, to ask about hiring policies, accommodation in the workplace and an annual rating system, which has helped so much for both women in corporation management list and the annual gay and lesbian list. It brought awareness to corporations and for whatever reason, various corporations responded.

It isn’t the universal hack I want, but it is a place to start.

But so are the ways you see disability and yourself. How has it improved you? Or changed you? How would you hack either disability community or the global perception?

3 comments:

Neil said...

MOST wheelchair users wouldn't try to get onto an escalator, you know. Now that one person *has* done it, there'll be a change in the warning signs, to protect the owners and manufacturers of the escalators, and it'll all be your fault. :)

Love and zen hugs,
Neil

Tina Russell said...

That is often how I think of being transsexual. For instance, as a model and a performer, I know it’s going to be hard finding acceptance of my transsexuality, but I also know I can sell myself as something new and interesting and try to take advantage of people’s ignorance. It’s not ideal—what I’d like most is to be someone people accept at face value—but if I can make a living by making my transsexuality a selling point rather than exclusively a burden, I’m happy with that.

I also make sure to make people know I have a learning disability (ADD) if I think it might encourage them to give me the help I need. In both cases, I’m encouraging people to think of me as an object, but at least it’s better than not being seen at all, I guess.

JaneB said...

What an interesting idea, to use 'hack' in such a wide sense.

How have my health issues changed me? In the same way, I hope, as my other life experiences - helping me become a more loving, giving person, helping me grow and empathise and be both tolerant - in the sense of open to diversity - and to hold more firmly and more publicly to my deepest values - because tolerance doesn't mean accepting discrimination, or violence, even if it's labelled as a 'cultural norm'.

And I found you, my dear friend, through blogging about my 'disability'. So yes, it has changed my life...