So I’m wondering what might cause anyone else with Arthrogryposis from getting involved and sharing their stories of living with this as adults? Is it fear? Shame? Lack of confidence in ones self? I want to hear from others living with this, because how else can we begin to bring true awareness to Arthrogryposis (AMC) if we don’t let go of any and all inhibitions about what others might say, think, or express about what we have to say.
Instead of going the road of wearing shirts that say things like “Take a photo, it lasts longer” or “What are you looking at?” I have seen these shirts and i do get it that they are being sarcastic, as I am with my name of this website. I also see it as a way for mainstream society to feel more comfortable with staring at us, because a joke is being made of it, so its cool, right? Well f#ck that, it shouldn’t be ok for anyone that doesn’t live with this to be able to act in that fashion. If I didn’t have Arthrogryposis then this entire website would be a complete messed up site for me to create.
Think about it, how do we honestly expect to learn, truly learn about our conditions if we can’t completely open up, online, for everyone to see. Especially ourselves, for us to converse back and fourth about what its like to actually be an adult with this and express or experiences, our techniques, our stories and they are not ALL bad or on the negative end of the spectrum. I just haven’t gotten to those topics yet.
So feel free to get involved here, and understand that anyone who does get involved that is judgemental, or mean, or plain out rude, will get removed. This is a place for us to learn without anyone elses interpretation but our own. No one here would ever tell you how you are supposed to feel, how you are supposed to do things, or express things. It is a free forum atmosphere.
So please get involved, encourage, educate, and share.