On Making it Living With a Disability

Another fabulous bit of wisdom from one of my favorite websites.

As I travel the country and world, the people I meet who are living with (and without) disabilities and “making it” are those that have three key attributes: First, they have an undying belief in themselves; in who they are. Like the Buddhists who ‘know’ they are sitting, walking or eating, these folks ‘know’ where they fit in the grand scheme. They pay no attention to the assumed limitations and restrictions placed on them by others. They blaze new trails, changing attitudes along the way. Second, they seem to have a great support system in family and/or friends; people with and without disabilities who see them for who they are. Third, they have an indefatigable (I’ve been wanting to use that word in a sentence for years) and bodacious sense of humor. They see their disabilities for what they truly are: a part of life; of the human experience and, therefore, subject to the “slings and arrows of outrageous fortune”.As I have said, for me, some of my funniest experiences have been directly related to my disability and that, quite often, it has had to do with someone else taking my disability far more seriously than I (my acute care doctor for instance). Now there’s a funny story ...To laugh is to survive...

On Relationships

In an attempt to de-clutter my brain and actually get some of my thoughts down on some kind of medium, I'm going to right about my thoughts and opinions of things in my life and what I see going on around me.
My first rant is about relationships. Why some work and some don't. I believe that my relationship works because we have the utmost respect for each other and we have each other in our lives because we believe that we have something positive to give one another. In other words, we don't bring drama into our relationship, fights are resolved quickly, disagreements are met with compromises and I think this is how an adult relationship should work. Also, we both believe that life is hard enough and that drama is everywhere else in our lives that why would we purposely invite someone into our lives to bring more negative energy and stress. Why would somebody do that? I personally believe that drama in relationships only works on tv and that leads me to why I think relationships don't work.

The TV Couple
I love Lucy, Everybody loves Raymond, All in the Family, Married with Children. These are just a few tv shows that have dysfunctional but lovable couples. Always arguing, never really wanting to be around each other or the kids, complaining about one another to friends and other family members. We all grew up watching these tv shows and of course we laughed because the arguments we're ridiculous and it was just plain funny. We all love watching other people's drama that's why people watched these shows. However, I'm wondering if these shows had an effect on the viewers and in the way they act in relationships.
I like to observe people and in observing them I see how they treat their significant others. Sometimes I feel like I'm watching a sitcom with the disrespect people have for the person who is supposed to be their boyfriend, girlfriend, wife, husband, etc. The whole ball-and-chain attitude I never really understood. If you really hate this person then why are you with them? It could also be differences in personality as well. I'm a very laid-back don't really like drama in my life kind of person. However, some people are more hot tempered and they need that drama to survive. I'm not saying that I don't like drama at all I mean I love to watch all those sitcoms and all the reality shows like The Real World and The Hills were it seems like they just cast emotional hot-tempered people who are willing to fight over just about anything.

I guess I would just have to say that I don't understand drama in relationships because I think of a relationship as a place of love and serenity. That no matter what is going on in your life you can go to that person you love and they can make you feel like the world is perfect. That's what I have and I wouldn't trade it for anything in the world.

Aren't you a good girl

That is what I nurse said to me when I went to a doctor's office. The nurse called me in and as I was walking towards her, cane in hand as usual, she says "what's wrong with you", I stopped dead in my tracks in total disbelief that a health "professional" would say something so ignorant. If I wasn't such a nice person I would have told her to go to hell. However, after I composed myself I told her that I have Muscular Dystrophy and she go's "oh aren't you a good girl". First of all what the hell is that supposed to mean? Second of all I'm 25 not 5, don't you dare talk down to me and treat me like a child because you feel uncomfortable around people with disabilities. That so pissed me off.
However, I was reading my favorite blog Arthritic Young Thing and she was talking about how disabled people it seems are supposed to heroic or brave just because of their disability. Here's what she says:

"Most disabled people hate being called brave, and 'an inspiration to the rest of us.' I have mixed feelings about it, myself. On the one hand, I do go through more pain and suffering than the average person, so it's nice to have someone tell me I'm handling it well. On the other hand, when an able-bodied person makes a big fuss about me just living my life, just like everyone else, it can get really annoying. I mean, sure, I do have more physical hardships than most people, but we all have our burdens to bear, ya know?

Categorizing all disabled folk as brave and heroic sets a dangerous precedent for the community. It's setting a standard that we're all supposed to live up to, whether we want to or not. Some disabled people enjoy the whole 'triumphing through adversity' thing. Yes, some of us do enjoy being pedastalized for persevering through our challenges. But there are others who don't want to be brave, who resent having to be brave. In an ideal world, disabled people wouldn't need to be brave, because the resources we need to live a good and regular life would be already there."

I've been called brave quite a few times and have for the most part been confused by it. Yeah, it's hard for me to get around and I do sometimes have difficulty with my learning disability, but I do it. I mean what other choice do I have? To just sit at home and do nothing. Hells no! That is definitely not an option for me. For other people who have more severe physical disabilities they might not have a choice in the matter. To me everything I do on a day to day basis is just normal to me, it's not heroic on brave. To me it's stuff that has to be and I don't see any other way around. I want to have a good job so I have to have a good education. I want to live on my own so I have to work. So far I've done all of those things, I have my bachelor's degree and I live on my own with my fiance. Sometimes it's hard but I think that everyone has their own issues to deal with mine just happen to be on display for everyone to see.

Exactly how I feel

I found this amazing blog entitled Arthritic Young Thing, and it's all about her musings on having a disability and how she handles things. There was one particular blog entry that really stood out for me and it was called "Growing a thick skin". It's really hard for me to describe what my life has been like and how I feel about my disability, so I thought I would post this on my blog, because she is definitely more articulate than I could ever be about this topic :). I've bolded some of the things that I could really relate to and things I wish people would understand about me.

"When I was a little girl, quite a few people picked on me for being crippled, for being a brainy bookworm, for being shy, for being anything they deemed unacceptable. No one ever told me the bullies were being jackasses, no, I was told to ignore them, to 'grow a thick skin', to not let them get to me. No one exactly told me how that was possible. I've come to the conclusion that when almost everyone is against you, and you have little to zero support, it's impossible to not let it get you down. It's impossible to 'grow a thick skin' in those circumstances, and it isn't even the most appropriate thing to do. The bullies should be called on their behavior and punished for it, and that should extend well into adulthood. One should not have to grow a thick skin and take that sort of abuse without fighting back, without crying out against the injustice.

All through elementary and high school, I was rejected, outcast and alone. I counted myself lucky when people ignored me rather than notice me, because people who noticed me went out of their way to make me miserable. I learned how to make myself small and invisible. I learned not to do or say anything that would draw negative attention to me. The problem was, I felt haunted because I knew I wasn't being true to myself. Biting my tongue, not wearing what I wanted, not doing what I wanted, not being who I wanted to be, all for the sake of being left alone and ignored. I didn't like being that person, but I didn't want to go back to being noticed and bullied either.

In order to become the person I wanted to be, I had to grow a thick skin. I'm not talking about being silent while suffering oppression, or not being bothered by the verbal abuse I received from others. I'm talking about thickening my skin enough so that I could go out and be the me I needed to be, skin not strong enough to deflect criticism and hatred, but strong enough to keep them from getting in to my inner core where they would do the most damage. Before I became that person, I was skinless and fragile, and every little glance, every word, every sneer would wound me to the deepest part of my being. Growing a thicker skin did not mean that I stopped being bothered and angry when people did oppressive and cruel things to me. I don't think people should ever be silent and stoic about being treated that way. Growing a thicker skin meant I was better able to be myself, and stand up and fight against that cruelty and intolerance."