But Why You Wouldn't To?

This was the question I kept being asked today by a family member as we sat outside her front porch just talking. Let me start by saying that for those of you who don't know this already, my family is rather religious. My grandfather is a pastor and for many years ran a small church in the backwoods of Georgia, along with my grandmother who was the Church Mother. They in turn, kept telling my father that the calling of the Lord was on his life to be a pastor, and like Jonah, he fled all the way to the other side of life just trying to find a way to live his own life.

I find this incredibly ironic, considering how hellbent they've been in trying to ensure that I lead a life that is rather close to the one that they've decided for me, but hey, they're parents so what can you do? All of that is irrelvent to my point in this particular blog. I bring that up because our conversation started out rather innocently enough. We were talking about my upbringing and how nice it was that being black and growing up in nice white neighborhoods, I got exposed to a lot more things than many people in my same situation. But then, we started talking about my disability, and others might see us with it.

I was once told, that my disability has essentially shaped my family and that by my having it, it has changed the way that everyone in my family operates. In one such opinion, my Cerebral Palsy was responsible for the fact that my brother has grown to be really introverted. Apparently as the bigger brother, it was MY responsibility to teach him things like baseball, football, flirting with girls and how to drive a car, none of which I currently do.

That was how things started.

Then the conversation turned to how perhaps all of these things could've changed if perhaps I didn't have a disability, or more aptly, how if when I was growing up, if I had worked harder to become like a normal person (her words) then I could've done those things after all. And NOW we get to where things started to get heated.

Let me take a minute and say that when I was growing up, my parents used to take me to Shriner's Hospital a lot, and during those visits, the doctors repeated over and over (and I heard more times than I care to admit) that medicine could only do so much. That it was MY responsibility to do the excersizing and to endure the pain of physical therapy and so on and forth. That I had to WANT to walk like everyone else. But even as she was talking, something hit me. Why was she so fascinated on why I wanted to be like everyone else? As a person with Cerebral Palsy, what if I had instead, wanted to embrace the ideal that I was a person with a disability? Couldn't I have gotten therapy for THAT instead? And it came to that all-defining moment in which the title of this blog is, when she asked me: But why? Why Wouldn't You Want To Walk?

And this is the problem. Her question echoes the fundamental problem with society today. As she sat there looking at me with an absolutely puzzled expression on her face, I countered back, "What's wrong with being me? Being a person with a disability?" To which she responded, "But who would WANT to have a disability? I wouldn't want my child to have a disability." Now I'm not going to sit here and sat that I would want my child to be born with disability, but the way in which the answer was framed was put in such a way that would signify that to have a child with a disability, was to have something that was broken, or incomplete, or marred in such, that it was beyond the reach of living a normal life.

I stress that my family member did not mean anything by her responses. They were simply questions she uttered in the moment, and I realized that she is simply repeating what she hears from everyone else. In America, I think we need to have another conversation about disability. Not with doctors and insurance companies and therapists about how to fix a person's life, but rather we need to have a conversation with the PERSON to decide what it is they want to do.

It's a lot like when I was performing with the gay men's chorus that I sing with in D.C. in June. The artistic director refused to let me lay on the stage with everyone else (who was on the floor) because he felt, that by leaving me in my wheelchair, that he was in fact, "doing me a favor." I feel like this is essentially the attitude that the medical profession has when assessing someone's condition when it comes to them having a disability (and I mean this strictly in terms of the disability. If a person is born with a congenital heart defect, then OBVIOUSLY that person needs medical intervention.)

But I told her that if I were a parent, and my child had a disability, depending on the severity and the type of disability, when my child reached a certain age, rather than force various types of therapies, drugs and equipment on them, I'd prefer to have a candid conversation about the nature of the disability and their life. What did THEY want? What would I have to do as a parent to ensure that they had the life fulfilling to THEM? I just feel that people should be asking about how they can help a person feel their best, instead of how they be the perceived version of NORMAL.

OK.

So this is the part where I talk about inconsistent things have been, and thats what life is right now. Inconsistent. Without a house, without a job, without steady income, who knows? It's all just liable to up and fly away at any given moment without a hint of a warning.

That being said, this is the beginning in the new year, and I have been trying to make some much-needed changes. So much has changed since the last post, that its kinda hard to keep track of it all, but I endeavor to do so, so that I have some record in the future when I want to look back some things and see how my life has progressed while I attempted to keep track of it.

I left Raleigh in November, (I was supposed to leave in October, but I got really sick from an allergy infection and ended up having to pay mom and them back 400 bucks for a new chair, so that didn't happen.) But I left, and went down to Florida to see Jessica and the crew for awhile, which was nice. The weather down in Orlando is godly and wonderful, and many times I would just look out the window and see palm trees and that lake and think about how peaceful it was.....until I heard Jess and her mother screaming at each other, or Jess screaming at Je'Lynn or Jess screaming at Eli, or Sue screaming at Eli or Jess or Steve....(see a pattern forming here?) I thought maybe I could stay there for a bit, but the month of November showed me how wrong that was.

Then mom and them moved to Lithia at the beginning of the month to their new house, which is really nice. I'm happy that their officially Floridians, although who knows how that will affect the rest of us as family members. I mean maybe we'll get stuck having to pay that bitch off or something, if we're trying to work out the finances and the real estate values of property when they die or something. But anyway, they moved, and I came to see them at the condo at the early part of December, and decided that I wasn't planning on coming back to the House of Madness, and that was during the time that I met Nick down in Kissimmee.

Hold up, let me back track. Before that, there was Willis, and Juan, and David, whom I liked, and Brian and THEN Nick. Yes, all that in a month period. I was kinda popular. Which was cool. But yes, Brian I still talk to, and he's cool. He's from Greensboro but he's a completely tool and totally arrogant which pissed me off to the damn core. Apparently he used to be a huge whore back in the city and everyone got wind of it, so he had to move. But I mean, I wasn't even sure what was going on down in Florida, but it was like one went from Madonna to Mother Theresa, and I wasn't down with that.

Anyway, I met Nick at the condo when I was visiting with mom, and he came and took me to choir rehearsal and we met up afterward and hung out. Stuff.....happened. But I mean, I was thinking I might be able to chill with him while I was getting myself together because Jess and I were talking about the fact that we might get a place together and we set about doing that, and even got approved at a beautiful apartment complex there in Sanford. And then I was hanging out with Nick and all the bombs started dropping. He told me he was a convicted sex offender....and an ex-convict.....and then I find out after I come back to Raleigh for Christmas break that he's also HIV positive. Too much, too soon. So I had to break that one off, and I'm glad I did.

But I was back hanging with Matt and trying to figure out what the next step was, and proceeded to get in touch with Julia and work my way back up to DC, which is where I am now. The apartment with Jess fell apart because she wasn't comfortable with the fact that I was looking for work outside of the state, and I told her I didnt really wanna be in Orlando anyway, but that I would keep paying for the place if I left. But she didnt wanna hear that part, so I just didnt come back.

So yes, now I'm here in DC and this has its own set of issues, from men that keep trying to set stuff up and disappearing like damn slow flakes, to the fact that Julia is like trying to pseudo hit on me, and its becoming like a freak show all over again. I hope this isn't the sequel to the show, because I really don't know if I can deal with that right now.

Tomorrow, I shall attempt regale you of a story about what my mother was saying to me over the phone about how I could force myself to fuck Julia and have a weird ass relationship and about the sexy South Aftrican that I met at the games club tonight.

A Bolt of Lightning

Finally some good news! Thank God! Truly. I have no choice but to thank him sincerely and utterly because it just came out the blue. And no, it's not a job offer, though I do believe that's coming in due time. I'm saying this because it had gotten to the point where I literally had to go to my parents' house to beg them for the money to make rent for August (and how I HATE to do that) because I just can't deal with TeamTech anymore and I still have to make it to September before the Disability stuff kicks in.

And actually I don't think that was mentioned. So yeah back in February I lose my job and try to get back on SSI but can't because they tell me they have to do a disability redetermination or whatever the hell that is, because of my work history and all that, basically to see if I'm still "disabled enough" to receieve benefits. Well I think this is the stupid thing ever because obviously my disability is lifelong (unless they start working on those stem cells with a quickness.) So yeah they've been trying to decide what to do. About three weeks ago I get a letter saying that they've decided to let me come back on the system and that my payments will start in September for my disability. So that's where that comes from.

So I've just been trying to make it through to Septembe to make sure I have everything I need and with our lease ending then as well, we've got to decide on the next phase. So yeah. Basically with no money coming in, I wasn't sure what to do and I went to mom and them asking them for advice and for help. Turns out, God had something different in mind. Apparently, like the lady has told me before, I qualify for both SSI and SSDI income and disability but I never had the first one because I had no work history and hadn't paid into it. Now I have so now I can have both. Well out of the blue SSI came through and put a cute 600 into my account yesterday. Which is literally right in the nick of time. Now I can pay for August rent, and be perfectly good to go, which will be great. And it makes my life so much easier, because now I can just focus on looking for work and not being so damned stressed all the time, and not having to put up with the horribleness that was telemarketing. I appreciate the little money they gave me but god, it's not worth it.

More on that in the next blog.