Category Archives: My life as an aspiefeminist
Last week, I began to write a post entitled “Identifying as “Disabled””. I never finished it and only managed to write a few lines because I got stuck.
I went to the Barnard Center for Research on Women conference yesterday (as you can see the program for). It only further confused me when it came to thinking about these issues.
Layout of this post which I might decide to break up into a few of them.
- I learned a lot at the conference and wanted to share some of those experiences and that information
- I found a lot lacking at the conference that bothered me and I wanted to vent
- I found myself really struggling with how to identity
1. What I learned at the conference
A lot. Not all from what people were saying directly, but from the experience as a whole.
General things I found interesting/noticed:
- it was a very queer event
- there were even less men than I would normally expect at a feminist event
- there were people in wheel chairs, using walkers/canes, etc than I have ever seen in one place before in my life
- it seemed to be an event about disability, for people with disabilities
- new word, “crip”
One of my friends said basically that the queer part is just because once you get to fringe academia and to these types of settings places are more queer friendly etc. I found that though to be an interesting part of the day.
The lack of men really baffled me. I am used to seeing a small, but still existent, presence of men at feminist events. Also, I would feel that disabled men would come to something like this because it was for them as well for the most part. I guess though that the more removed you get from “rich, white, heterosexual, cisman (who also presents outwardly as male in gender presentation), “able-bodied”, etc”, the more people in those various minorities that you get. For example, there were more women I saw of various racial minorities present than I have seen in many feminist gatherings.
There were ASL interpreters present, captioning for people, and various other assistive methods present. Unlike most places where there are a few “handicapped accessible” seats in the far back or to the side or somewhere else out of the way, the people in wheelchairs were spread throughout the room. There was no sense of people sitting off to the side because of mobility or fear of being in the way. When we arrived, a woman was on the floor on her back because one of her wheels broke on her chair and someone was fixing it. Women walked through the room with various physical supports and did not look down in shame as they passed by others. I realized that I’m not used to seeing people’s faces when they are using assitive devices because they often seem to be looking down at the floor as they pass by. So many of them had such physical presence it was astounding.
As I mentioned, it was very much an event that tried to be as accessible as possible for people with physical disabilities.
The word “crip”. Essentially parallel to the way that the word queer has been revamped and is now a positive word used with pride, crip is used by some within the disabled community to self-identify. Also, “to crip” something as a verb is like queering something. I have to read more because I don’t want to get it wrong, but it was interesting.
It often seemed to ignore that there was such a thing as a non-physical disability. I felt alienated and like an outside for most of the day. In a sense, that could be a good thing. It means that the physically disabled population probably felt like they belonged and didn’t feel alienated. I’m very glad that it was made to make them feel like they belonged. However, I wasn’t there as an observer. I was there because I am interested in these issues and affected by them.
It was very much an event about academia. Despite the presence of all of these wonderful women who were personally affected by the issues at hand, the conference was about the abstract and academic concept of “disability”. Some of the practical issues were raised, but they seemed secondary.
Anecdote illustrating this: I talked to a woman I met at the conference. Her interest in disability rights (seems to have) stemmed from the fact that her mother is a polio survivor and has physical effects of that she lives with. This woman, I will call her Nora, met another woman who is very involved in the movement (I will call her) Susan. So, Susan was at the conference yesterday and it was the first time that Nora had seen her in a while. They had a very awkward meeting previously.
Nora: (something something)…watching my mother degenerate from polio
Susan: Maybe you need to find a different word than degenerate (walks off and doesn’t give her a chance to think of one or explain)
Susan’s response I feel illustrates how I felt the attitude of the conference was. So, just to explain the interaction and how I feel about it first. Nora is presumably going through a rough time. It is very difficult for any of us to watch those we love and care about suffer. It is also difficult to know how to help them and how to react to and relate to their experiences. She described her experience in the vocabulary that fit. Susan, being opposed to the word “degenerate” and offended by it as someone involved in the disability rights community, wrote off Nora as insensitive and ignorant. Whether or not I got all of that right, you get the idea. Nora was describing her reality and Susan was reacting to it as if it were academia.
Experiences in real life cannot be written off simply because they seem to go against your specific views of the topic in academia
As someone who is used to dealing with things from the public health/psychology/social work side, that is a horrible thing to respond. It is essentially invalidating her personal experience and feelings with a tremendously difficult thing simply because she phrased it wrong. In a university course, she can ignore people from using that phrase. However, in real life outside of a classroom when she talks to another human being, it is incredibly insensitive and hurtful to do something like that. She did not even allow her a chance to change the wording and continue the conversation. She left the conversation abruptly. That is rude.
Aspie Parallel: I hate Autism Speaks, I have read things by Jim Sinclair and about neurodiversity, I plan to attend Autreat, I hate talk of curing, and I talk about aspie pride in WrongPlanet forums (hyperlinks attached to help if you aren’t familiar with any of those). Yet, I am aware of the fact that if I were neurotypical, there are a lot of things about my mother’s and my boyfriend’s lives that would be easier. If a woman said that she was stressed out trying to deal with her autistic son and went to a support group for it, I wouldn’t walk away from her. I understand that it is possible simultaneously for me to not have to apologize and feel sorry for doing things that are part of who I am and yet at the same time, for someone else I love to struggle with how it effects them.
I have been wondering whether or not I “count” as disabled. If I am “allowed” to consider myself disabled and whether or not I “deserve” to identify with that label. It is too complicated to begin here so I decided to move the rest of this section to a new post.
I received information about an event and was asked to post about it. So, Rudy Simone (who I think is awesome and I will see in April at a conference) is speaking.
THE HELP GROUP’S DISTINGUISHED LECTURER SERIES TO FEATURE RUDY SIMONE, NOTED ASPERGER’S SYNDROME AUTHOR
The Help Group and its Advance LA transition program are pleased to announce that Rudy Simone will be the first speaker in its 2011 Distinguished Lecturer Series. Ms. Simone will present “Young Adults with Asperger’s or High-functioning Autism: Must-have Advice for Transitioning Successfully to Work and Adult Life” on Thursday, February 24 at 6:30 p.m. at The Help Group Autism Center, 13164 Burbank Blvd. in Sherman Oaks, California. Tickets are $25 for professionals seeking continuing education credits and $10 for all other guests. For more information or to register, please visit www.thehelpgroup.org.
Founded in 1975, The Help Group is dedicated to helping young people with autism and other special needs fully realize their potential. It is the largest, most comprehensive nonprofit of its kind in the United States and is recognized as a leader in the field of autism. The Help Group offers a wide range of innovative autism spectrum disorders programs, and each day, 950 students ages 3 – 22 attend its autism day schools.
I thought this was really funny. My mom thought it was hilarious. Some woman in the comments was offended because she has an autistic kid.
Curious what people think
One of my favorite books. I will probably talk about it later in more depth.
A lot of us hear that term thrown around.
One explanation of High Functioning Autism:
High functioning autism is not an official diagnostic term, though it may be used as such. It tends to describe people who have many or all of the symptoms of autism but did not develop language typically. It’s a helpful diagnosis that can help guide appropriate treatment and school placement. On the other hand, it is important to be sure that a “real” diagnosis (that is, one that is described in the official diagnostic manual) is also placed in your records. It is this “real” diagnosis which may pave the way to medical and Social Security benefits down the road.
One useful explanation of the difference between Asperger syndrome and high functioning autism comes from the National Autism Society in the UK. Here’s what it says:
- Both people with HFA and AS are affected by the triad of impairments common to all people with autism.
- Both groups are likely to be of average or above average intelligence.
- The debate as to whether we need two diagnostic terms is ongoing. However, there may be features such as age of onset and motor skill deficits which differentiate the two conditions
- Although it is frustrating to be given a diagnosis which has yet to be clearly defined it is worth remembering that the fundamental presentation of the two conditions is largely the same. This means that treatments, therapies and educational approaches should also be largely similar. At the same time, all people with autism or Asperger syndrome are unique and have their own special skills and abilities. These deserve as much recognition as the areas they have difficulty in
So, the term “high functioning” is sometimes used to describe people who are on the “normal end” of the spectrum essentially. Those with Autism who can more easily pass. Or, those with asperger’s.
The question is, how do we measure functionality?
Today I spent the day doing testing to be part of a study for “high functioning” people on the spectrum. Throughout the day, I felt uncomfortable. I felt as though I had something to prove. My mind kept blanking every time I did a test and I felt like an idiot trying to answer all the questions (e.g. define the word calendar, number, presumptuous, etc). Yet, I knew that even if they thought I was stupid, they would just excuse it as me being less high functioning. If I did “too” well though, I felt that they were judging me even more. I spent the day worried that they didn’t believe me that I even have aspergers. At the end, they had another woman come in and interview me more. I felt as though she was interrogating me to see if I really have aspergers. She seemed not to believe me that I was diagnosed or to think it was a bogus diagnosis. I blanked out on how to explain what traits I have!
But, why do I care what she thinks?!
For starters, I want to be accepted into the study. I got $40 for today and I could really use money for the other steps. Not to mention that I really want photos of my brain!! Also though, I was worried of the “undiagnosing” me. I am an aspie. Having aspergers is part of my identity now. Sometimes it is annoying, but taking away the label isn’t going to make it any easier, it will just take away the small amount of solace I have in the sense of shared experience I have. I was scared that if I was too normal, they were going to take away part of my identity.
I was told by my college that if I wanted the accommodations I asked for, I should transfer to a school with a special needs program. I’m not high functioning enough to deal without having supports, but I seem to be too high functioning to be counted as “really” counting. I do suffer from my aspergers. I support the neurodiversity movement and do not hope for a “cure” to make all of us normal. However, I do suffer from a number of things related to being aspie. Also, I would have been much better if I had just been diagnosed earlier. It isn’t that I’m suffering “from” aspergers, it is that I’m suffering trying to fit some of those traits into the rest of my life and suffering to fit my life into the rest of the world.
It scared me that my identity could be “changed” by some doctor saying the word. I don’t know, if I were to get a different diagnosis, would I keep it instead or just ignore them? Anyone know what they would do?
I know a guy who was diagnosed when he was much younger with aspergers. He didn’t know about it until earlier this year because his parents didn’t think it was a real diagnosis or that he needed help. As far as I know, he did pretty well in school throughout and didn’t really struggle too much with his classes. However, socially he is super super awkward and has a lot of trouble. I am still shocked that nobody (since the original people) noticed something was up and tried to diagnose him. My only logical way to explain what I know about the two of us, is that I’m much “higher functioning” than he is when it comes to social skills but that he is less affected non-socially than I am. I could be wrong.
That however doesn’t fit in with how most people would view us. You meet me and, like many therapists, you don’t realize I have asperger’s. You meet him, most people know something is weird and that at the very least he is just a really awkward nerdy dude. So, if we were to both show up to be in a study or just both show up at a support group, he would be perceived as the “lower functioning” one. Despite the fact that I struggle even with the supports I have currently and he has never really had supports and seems to be fine. I can cook and he can’t though. I can respond to a conversation topic with an attempt to stay on topic and show that I paid attention. I am self-aware after learning so much about myself. He is not. So, how do we determine who is higher functioning?
Is our measure of success just how well we can “hide” our aspergers?
If so, most females I know with aspergers are super high functioning. Why does it matter to determine levels of function?
When many of us have found a way to overcome our labels and diagnosis and turn them into aspects of our personality and identity, why do we need more labels to make sure we are still judging ourselves?
[The following is from Diagnostic and Statistical Manual of Mental Disorders: DSM IV]
(I) Qualitative impairment in social interaction, as manifested by at least two of the following:
- (A) marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
(B) failure to develop peer relationships appropriate to developmental level
(C) a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people)
(D) lack of social or emotional reciprocity
(II) Restricted repetitive & stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:
- (A) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(B) apparently inflexible adherence to specific, nonfunctional routines or rituals
(C) stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)
(D) persistent preoccupation with parts of objects
(III) The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning.
(IV) There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)
(V) There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood.
(VI) Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.”