#OK this blog is no longer limited to grannies. | Explore Tumblr Posts and Blogs

andribelieve · 6 years

Text

If I'm not Disabled, what am I?

-I’m feeling shitty about myself so here’s a blog post I wrote a while ago.-

If you google "disability" on the internet this is what you will find: "Disability is an impairment that may be cognitive, developmental, intellectual, mental, physical, sensory, or some combination of these."

If you google "disabled" you will get this result: "(of a person) having a physical or mental condition that limits movements, senses, or activities."

I was born with a muscle disorder (myofibrillar myopathy) and scoliosis. If you look up either of those, this is what you will find:

"Myofibrillar myopathy is part of a group of disorders called muscular dystrophies that affect muscle function and cause weakness. Myofibrillar myopathy primarily affects skeletal muscles, which are muscles that the body uses for movement. In some cases, the heart (cardiac) muscle is also affected."

"Scoliosis is a sideways curvature of the spine that occurs most often during the growth spurt just before puberty."

My muscle disordered caused my scoliosis as well as heart problems (restrictive cardiomyopathy) that led to my needing a heart transplant in 2005 at the age of nine.

I'm not perfect and I can't say that I have never used my medical issues as a crutch. If I am too tired to do something or think a task will be too difficult or just really don't want to do it I may use my muscle disorder as an excuse to not participate.

Recently, my mom has started to respond to my "excuses" with "You are not disabled." To which I respond, "Yes I am! I have a muscle disorder!" She then continues to insist that I am not disabled and whether or not she means it in a way to boost my confidence or to squelch my excuses I am not sure.

This statement has really started to get under my skin. If I am not disabled, then what am I? I have severe scoliosis that has left me with a hunched back and limited mobility in my hips. My hips are uneven due to the scoliosis so one of my legs is "longer" than the other. I have a metal rod in my back that protrudes due to my lack of fat and muscle. I have chronic, neck, and leg pain.

Due to my muscle disorder my joints are messed up. My knees cannot straighten so I walk like a grasshopper or a T-Rex. I am unable to lift my arms straight over my head our hold them straight out to the side. My wrists have limited mobility, I can't blow kisses with my hands. It's stupid, but for some reason it's a big deal. I cannot walk very far or stand very long. I've gone to a camp for kids with muscular dystrophy for six years. At school I ride a scooter, not a mo-ped, a granny scooter. And I'm 4 feet tall.

If you read back to the definitions of "disabled" and "disability" it includes physical impairments that limit activity. I can do a lot of things that's for sure, but these things can be really draining for me. I can't call myself a "spoonie" I don't think. I'm tired by the end of the day, but I know I could have it worse, but to say I'm not disabled? It doesn't make me feel good.

Why doesn't it make me feel good? Well...I feel like my struggles are not validated. This is tough for me because I know that I have grown up with these issues and because of them have developed a complex. I am used to be coddled and taken care of. I know it can be a problem and, yes, I am trying to work on that, but please don't tell me I am not disabled when I clearly am.

It does not boost my self esteem at all. Yes, I struggle with not letting my disabilities define me. I HATE the way my body was made. I really, truly do. However, you telling my I'm not disabled makes me think that I need to work harder to hide my struggles. It makes me think that I am being selfish when I really am in pain.

What would make me disabled in your eyes? Do I have to be completely immobile? Completely dependent upon other people? Can I not be a disabled person who is independent and dependent at the same time just in different circumstances? Please do not tell me that my physical ailments are nothing. They are me. They affect everything.

It is ok to be disabled. I am not offended by you acknowledging that, in fact I appreciate it as long as you do so respectfully. Yes, I need to stop the excuses but you need to stop pretending I am able-bodied like you are. It is hard enough to try and pretend that I can do everything when I physically cannot. Help me believe that I am disabled and it is ok to be so. Help me believe that my crazy, jacked up body is not disgusting.

Please. Just validate me so I don't feel lost in this limbo where I am "not disabled enough" but am also "not able bodied enough."

#disability #MDA #rant #illness #chronic illness

0 notes