Monday, July 6, 2009

I say "Get Mad"

So meeting Enoch was hands-down the most powerful moment of the trip for me. It was like seeing all of these kids that we had met so far, all grown up. We met Enoch on the streets of Accra, in an area that was referred to (by our hosts) as the 'slums'. Sounds nice, right? We were told that this is the area that the homeless, particularly the disabled homeless, came at night to sleep once all of the shops closed up. During the day, these people faced hours upon hours in the hot African sun begging on the streets.

It was Sunday, so the shops in the market were closed (they actually close things down on Sunday in Ghana, wow) and people with disabilities literally lined the streets. I admit, I had almost a lustful urge to talk to them all, to hear all of their stories.

Enoch was seated with his family, a hodge podge of children and adults that shared a common area on one side of the street. In a tee-shirt and jeans he look relaxed enough until he saw our guide (Felecia) coming through with a troupe of westerners. Immediately, when she approached him, he began yelling (in Twi) and gesturing (angrily) towards us. Though my Twi is pathetic at best, I got the gist of what he was saying: I'm not some display, why are you here, you have done nothing to help me.

Apart from being taken aback (most Ghanaians really are very friendly to westerners), my immediate feeling was "that's right, you should be pissed off". I mean, come on, you get a bad polio shot when your a kid, you loose most of the function in your lower extremities, you get discriminated against all your life, you have to beg on the streets to support your family because there are no government supports for people with disabilities (or there weren't when you were growing up), and now some white women from the US are going to come by to see what you're up to! Ya, I think getting kind of angry was an appropriate emotional response.

Now, Felecia who is the amazing wife of Eric from SGM, talked to Enoch about who we were an what we were studying. It turns out that Enoch also spoke fabulous English (though I think he yells better in Twi), so I got to talk to him directly about what our goals were. It turns out, he was more than happy to discuss the Ghanaian disability laws with us and his experiences trying to get support from social welfare. He was interested to hear what occupational therapists did (he had heard of PT but not OT, of course!) and was appreciative of what we were trying to accomplish on this trip.

We had heard from other Ghanaians that we talked to that the "street people" wanted to be there, that they didn't want to get real jobs. In fact, Enoch and his friend want to learn to work with fabric and design clothing (a very popular and fantastic trade in Ghana). Here are the problems: 1) options for where he could learn this trade are limited, 2) they cost money, 3) they do not allow men to bring their families with them, 4) he could not work while he learned the trade so his family would have no support while he was away, 5) once he learned the trade there was no gov. support to get start up materials or space to start his own shop/business, and 6) even if he started his own business Ghanaians would likely not buy from him due to the negative stigma surrounding people with disabilities (e.g. evil spirits, witchcraft...).

So, what would you do if you were Enoch. You would get on your hand-crank bike-chair everyday in the hot African sun and get what you could to support your family.

Why does this encounter sit so strongly with me? I guess because someone like Enoch would have such a different life if he were living in a developed country. He is bright and is completely functional except for the paralysis of his lower extremities. In the US he could have accessed a full (free and appropriate) education, upon completing his education there would be a transition plan in place, he could enter public buildings (even past the 1st floor in most) and use public transportation, he could get on and off of the sidewalks (curb cuts), he could work in a variety of industries and given his strong work ethic I'm sure he would do quite well in many areas.

Not to toot our own horn (because TRUST ME, I know our system has flaws) but our supports here in the US are light years ahead of many places in the developing world. I know that Ghana is working in the right direction; but the problems faced by Enoch and others like him seem so HUGE.

I want to help, I really do. But right now, all I can think to do is listen, to be his friend, and to tell his story. There is a lot of work to be done on so many levels and the supports will have to come from the top (government) down for anything to have a real and lasting impact. To get the governments attention people will need to speak out, speak up, and "get a little mad". My advice to Enoch, shout loud enough for someone in the government to hear.

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