As I said in my last post, I went to my first local MDA event yesterday. It was in many ways a bizarre event for me personally, though all in all not a bad experience by a long ways. It was a fundraiser for the local MDA called "Locked Up" where volunteers are put in a mock jail and people take pictures of them, and people coming through the event pledge money to "bail them out" at whatever level the volunteer decides to set their bail. It was a clever idea, and made for cute pictures and what seemed to be a good time for the volunteers. The volunteers also seem to be treated very well, getting free lunch and lots of other swag for their troubles. There was an amazing amount of volunteers and people attending such a local event. It must've taken up almost half of the restaurant. My PCA and I were treated in a friendly manner, and some of the people even assumed that I was a volunteer and not a "client". It probably helped that my PCA that day was a friendly, outgoing person as I tend to not be in crowds of people, but I actually ended up talking to a mother of a 10-year-old with Duchenne's muscular dystrophy. She thought that I was much younger than I was (I admittedly have a baby face) and was shocked when I told her that I was married, but I didn't feel disrespected or dehumanized in any way.

 So somehow this year I have become a member of the MDA. A "Jerry's kid". When I was younger my mother applied to the MDA for me and I was rejected because my disability was undiagnosed. My disability is still technically undiagnosed as of yet (though I know it's definitely not muscular dystrophy or ALS), but either their scope is changed or I just met the right people last month and am now magically a member of the MDA after 30 years. I am really not sure how I feel about that. As a low-level disability activist for much of my life the whole concept of being a "Jerry's kid" is somewhat repugnant, and after 30 years of having a severe disability without an identity or an organization to back me up I feel somewhat like I imagine people who are diagnosed or injured later in life feel when they suddenly have an identity that is different from the identity they have had thus far. However, the MDA does have some very good benefits that would definitely be of use to me, including the ability to meet some local people at their gatherings and events. We just moved to this area about two and half years ago and I still haven't made many local friends or developed much of a local network. I can't say that I am a particularly outgoing person when it comes to being social, but I definitely have a need for community and being social that I often neglect. Last week I got a call from the local MDA office inviting me out to a fundraiser lunch that they were putting on at the local Red Robin. They wanted "us" more involved and so are offering us free lunch. I think I will be brave and go and give them a chance. Maybe they won't make me squeamish. One never knows. I will blog more about it when I get back.