5:47pm May 25, 2014

Oh and, introduction for the purpose of posting on the #actuallyDD tag…

I’m autistic.  And I was also at one point diagnosed with developmental disorder not otherwise specified.  I’m still not sure exactly what that was referring to, other than that there was a lot of talk, in my adolescence, about how I had a “severe and complex developmental condition” that didn’t really have a name or anything.  I didn’t really understand what they were getting at, and I still don’t.  I don’t have an intellectual disability. Growing up I was classified as gifted until I stopped qualifying at age 15 due to a drastic drop in IQ (which by the time I was 22, dropped to 85 – and by the way I hate IQ tests and don’t believe in them, whether the scores are high or low, so please don’t tell me that either my higher or lower IQ was my “real” IQ, I don’t believe in “real IQs”).  

I do have a lot of cognitive, perceptual, and movement-related impairments that mean I need pretty extensive services at this point in my life.  I have been in the developmental disability service system since I was 20 years old.  I was in a lot of mixed psychiatric/DD “service” environments as a teen, including private mental institutions and special ed.  I had a lot of psychiatric diagnoses and misdiagnoses as well as my DD diagnoses.  And I also have chronic illness and physical disabilities.

I’m not the sort of person who finds it easy to ‘come home’ to the various disability communities, but I easily find myself most at home in the developmental disability self-advocacy community.  Somehow the values and the people mesh with me better than the autistic community, the psychiatric consumer/survivor/ex-patient/mad-pride movements, or the mainstream disability rights movement for example, even though I have participated in all of those as well.  One thing I like about the DD self-advocacy community is that it seems more diverse than a lot of disability communities, and more focused on the fact that all people are human beings first and foremost, with all other values stemming from that.  (I’m a hard-core Hufflepuff, that has to appeal to me.)

I live in my own apartment, and I get a lot of help to do that.  I wish everyone had the opportunity to have the kind of help that I get, because nobody should have to live in nursing homes, or group homes, or other institutions.  Most of the people I know in the offline world are other people who get services through the same agency as me, so that ends up mostly being people with developmental disabilities.  I never otherwise feel as utterly normalas I get to feel at self-advocacy conferences and the like.  And I don’t mean normal in a bad way, I mean I don’t feel like I stick out like a sore thumb or like I’m only being tolerated and not accepted.

I write a lot of posts that are long, and that’s partly because of my language problems.  I apologize in advance for that.  I try to tag them #long or #long post, so that people can block them if they have to.  Unfortunately, I am not good at summarizing.  So if I write something really long, I can’t easily translate it into just a couple of sentences.  I wish I could, because sometimes I’m not even able to read the posts I write.  (My language expression is better than my language comprehension, by far.  Most of my cognitive abilities are extremely uneven, where I’ll be great in one area and terrible in another even if the two areas seem almost the same.)

Anyway… that sort of stuff is why I’d be posting here.  There’s obviously a lot more to me than my disability.  I’m interested in crocheting, it’s pretty much all I do all day long.  And I am very interested in sensory experiences – words and ideas are a nice place to visit but I wouldn’t want to live there. My favorite place is the redwood forests near where I was born, and I wish I could live there all the time.  But I live 3000 miles away from all that, and am not likely to ever move back.

5 notes