Holy Crap!

I can't believe how long it has been since I started (and immediately abandoned) this blog. Since that time, I feel like a million things have happened.  My life has certainly changed.  Let's see if I can recap almost five years in a few sentences.  In no real order:  I survived a near-fatal illness, moved 3 times, got a grad degree, ended a bad relationship, started a great relationship, moved in and then out of my parents home, bought a house, moved in with my boyfriend, and started a 40-hour-a-week job that has basically become my life for the past few years.

Working for a state mental health agency has been an amazing experience, but there have been a few downsides to it. Primarily, I have much less time for myself and others.  I also find that I am more of a home-body than ever.  It takes a lot of time and effort to stay current with "what's cool" and most of my free time is spent trying to desperately grasp at a personal life and keep up with the latest trends (is Katy Perry still cool?).

Being a person with a disability and working is very difficult.  During the week I spend a lot of my home time resting.  Having a mostly-desk job has done a number on my neck and back and I am starting to reaaaally pay the consequences.   I don't know if it is disability or simply old-age, but I'm starting to creak like an old staircase.  I hear standing as often as you can is the "new cool thing"; I'm trying to do that often.  However, I'm not sure my therapy clients would like me towering over them, much less doing stretches or yoga poses during their sessions.

Despite my struggles, I am grateful that I have been able to maintain a 40 hour work week.  Once I was in school and really started thinking about my career, I always thought in the back of my mind that working a job like this might be too much for me.  I now know that I can handle it and I try not to take that for granted.

Thanks.. no, really...thanks...AAH IM AFRAID OF HEIGHTS!

A common reaction after a tell-all discussion is that I'm amazing and inspirational to all. While I appreciate the sentiments, I really honestly find them hard to agree with. Maybe I'm in an odd situation because my disability has been a part of my life for my entire life, but I really feel like I'm living the life that anyone would live in my situation. I really haven't had to dig myself out of any muddy trenches or triumphed against any major battles and I certainly haven't had to walk uphill in 10 feet of snow both ways to get to where I am.

I think the common belief that many people assume about me and disabled people in general is that our lives must be the worst ever, and we really need someone to help us feel better. I think its a very normal and understandable reaction. When we encounter someone with a disability we take into consideration our own health and mortality, and instinctively compare ourselves to them. What would it be like to suddenly be in a wheelchair? What would it be like to not be able to run, hike, play golf, see a beautiful sunset or listen to music? When we think about life without our favorite past times of course we feel sad. But most people we encounter with disabilities have already adjusted their lives to living without, and find many other positive things that keep them happy. Us disabled's aren't constantly feeling like things were taken from us every second of our lives. Really, for the most part I don't even think about it.

The bottom line is, I'm not down about my disability. Hardly ever. So sometimes when people cheer me up I suddenly feel like I'm thrusted onto a pedestal and now I finally look AND FEEL awkward.

A video I saw in one of my classes spoke to this concept. The presenter in the video read an excerpt from a narrative of a mother with a disabled child:

She said, “Im doing what im doing and what I have to do what you would do if you were in my position.. period. I'd like it if you'd try to understand how our family works and why we act goofy sometimes but don’t burden me with sappy stories on how amazing I am or how my lot in life is some kind of a gift. I want your understanding and respect but not your awe”

Clearly this woman was frustrated by the treatment she was receiving. While I don't feel any animosity towards this kind of response, I often want the person to question what exactly it means to put so much praise on someone who is just simply living, breathing, and adjusting to life's infinite unpredictability just like everyone else.

Not that I want to be uninspiring. I really want to inspire people to be honest, open, brave and comfortable with things that make them feel weird, and I hope that this blog will help bridge that gap between wanting to know and not wanting to offend.

The beginning.

For a long time now I've wanted to start a blog and I wanted it to have some sort of theme or purpose. I've always wanted to change something about the way society views disability. Even the word "disability" holds such power and stigma. I know I myself avoided the term or any association with the disabled word for most of my childhood and adolescence and I haven't decided if it helped or hindered me. I have felt for many years that my avoidance may have simply been due to the fact that I didn't really fit in with either the disabled or non-disabled world. I'm not in a wheelchair, I don't require any adaptive technology, I have all five senses and a (relatively) high functioning brain, I can walk, drive, read, drink, dance (rather poorly)... Really what makes me disabled is the outer world. Most of my adaptations come with society and it's perception of me and other disabled people. I learned about this in my disability studies course... otherwise known as "The Social Construction of Disability". Google that shit now, people.

From what I remember about the few articles I read, Disability is defined not as an individual's lack of ability, but society's failure to adequately provide for all people to function in "normal society" regardless of ability. I know that while I can do most things on my own, it takes me a bit longer a lot of the time, and that doesn't translate when society is so fast paced. Society attempts to make adaptations and, I'm not at all adversed or upset or think they haven't done enough. However, their attempts are merely to "catch us up to speed" and never really help slow things down or accept things as they are.

Unfortunately, a community that is 100% adaptable to all people regardless of ability seems highly unlikely. My goals for my life (and this blog) are more bottom up. Based on my experience with having a cosmetic, highly obvious disability for as long as i can remember I have one request of all of you:

Never. Ever. Ever. Be afraid or embarrassed to ask questions.

We know what we look like. We know what you are thinking. We know you are wondering, what is that girls PROBLEM?? Maybe not all people with disabilities feel this way, and maybe some non-disabled people really aren't that curious. But for those of you that are, it's coo. I would be too. And if I see a person with a disability unlike my own, I have the same reaction as you do. Polite inquiry is always okay with me, and preferred.

Often I bring it up myself, to soften the blow, and usually that allows for a great, awesome discussion. And I really appreciate people's sensitivity. The last thing any person with a disability would want is to be seen solely as a disabled person, and I think that is why people hesitate. However, when you feel comfortable and you have an twinge of curiosity, I say go for it! The very worst thing that could happen is that the person would tell you they aren't comfortable with those questions. But I'm betting you that 99% of the time, a person would appreciate the attention that polite curiosity provides, along with a break from constant staring, overly-obvious avoidance and, way-too-nice-to-be-genuine behavior from strangers.

Questions are good. Srsly. I mean, who doesn't like talking about themselves?

Any Questions can be posted in my comments or to my email. I'm ready to answer anything (within reason... my parents might be reading this!) I'd also like to hear from people with disabilities. Funny stories about interacting with "normal" people, in particular. I'll post a few of these soon. Feel free to remain anonymous!