As someone who sees things better when there is some structure, I decided to make a chart for this part. Also, I consider chronic medical conditions and the like as included in my category of “disabled”.
|I am covered by the Americans with Disabilities Act||I can walk without any assistive devices|
|I employ the use of college disability services||I can take the stairs instead of needing an elevator (except when my asthma or an old soccer injury acts up)|
|I need to take multiple medications daily||I can see with only the help of my prescription glasses|
|I have spent my spring (as well as other) breaks primarily going to various medical specialists||I have never had a serious surgical procedure that has required me to spend the night in the hospital|
|I see someone regularly to help me compensate for difficulties I have that are related to my diagnosis||I have never been admitted as an inpatient to the hospital|
|When people say “person”, I know that what they are envisioning differs from me in at least one way||When people see me, they don’t pity me based on the functioning of my body|
|People have felt bad for me purely because of a diagnosis||I am able to enter the main entrance of a building and not have to use a side entrance|
|I have been made to feel that somehow because of my accommodations, I was being given an unfair disadvantage||I can go to the doctor and the exam table has been created for a body like mine|
|I cannot take exams in the room with everyone else in the same amount of time||I can take an exam using the same exam copy that the rest of the class does|
|When filling out forms/applications I have to be careful about how much I disclose so that I won’t be denied merely because they assume I am not capable of certain functions because of that information||I can read the menu at a coffeeshop/restaurant in the format they have available and I can order and be understood by the people working there|
|Most systems in our society were created in a way that are not conducive to my abilities||Nobody describes me based upon my disability, “the deaf/blind/wheelchair/etc girl”|
|I have been denied accommodations that a a medical professional has requested for me because they weren’t “reasonable”||Most people who know me, do not realize there is anything different about me|
|I have had to do things in a way contrary to what comes naturally to me||People who do not know me, rarely realize there is something “wrong” with me|
|People don’t regularly ask me if I need “help” when I do things I’m capable of doing|
This is obviously not a complete list.
Also, it brings up the issue of able-bodied privilege.
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.
ASD impact areas
- vulnerability/likelihood of the experience occurring
- how it was perceived (both physically and mentally) at the time
- nature of and actions of abuse (e.g. withholding medications, using traits such as hypo/hyper-sensory issues against the person, etc)
- how others reacted to any reference made to it
- how the person was affected by it afterward
- if medical/legal help was attempted
- medical/legal response to person as well as overall experience in those systems
- PTSD likelihood, interactions between trauma and comorbid disorders/common tendencies
- recovery process (support system, services available, ability to obtain etc)
So some of the people who have talked to me have suggested a survey.
I figured I would start brainstorming a list of possible questions/topics for it:
- Do you have a diagnosis of an ASD? Do you believe you should have one?
- How old were you when you were professionally diagnosed? (self diagnosed?)
- Have you even experienced any form of sexual, physical, emotional, of psychological abuse? (if no, continue to question #
- Have you had more than separate experience (with a different abuser)?
- Have you been subjected to ongoing or repeated abuse by one (or a group of) abusers?
- If you feel comfortable, please elaborate as much as you can about the types of abuse.
- At the time of the first incidence, had you been diagnosed with an ASD? (if no, continue to questions #10)
- Was the abuser (or were the abusers) aware of your diagnosis?
- Do you believe that your diagnosis (either their awareness of it or the characteristics you possessed) had an effect on any of the events in a significant way? (continue to question 11)
- Do you think that if you had already received a diagnosis prior to that point it would have affected any of the events significantly?
- To be continued…please feel free to give suggestions
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.
Learning Difficulties and Sexual Vulnerability: A Social Approach – book information – Jessica Kingsley Publishers
Another book I thought looked interesting. Anyone know anything about it?