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First -- thanks to all of you who commented on my proposed letter yesterday.  I'm making changes and getting ready to submit next week.  I thought I'd talk a little about something that surprised me (but in hindsight shouldn't have) -- that information access is not equal across the board -- even if you've got leet skillz like me (I used to do spam tracking and Cancelmoose stuff on Alternet and ran a BBS, so, yes, I'm quite geeky.)

It was a diary here on dKOS that really hammered it home.

(dramatic squiggly pause)

I don't know who wrote it (this was before I joined) but it was an angry, insightful, and stunning rant about the devaluation of the disabled.  I remember part of the diary concerned people making excuses for women who killed disabled children but not for those who killed healthy children.  Although I'm not disabled (nor is any of my family), the stunning revelation that this really IS true hit me like sixteen tons of brick, and I sat around, stunned and depressed, for almost two days.

Access to information is given in proportion to how much you are valued.

I have a friend who was disabled at age 5 from a 5th cervical vertebra break.  He has a wheelchair with a portable iron lung, he holds down a job, he works with disadvantaged kids, he goes out with friends, he has a live-in nurse, and because he's such an inspiration, his caseworker is in frequent contact with him and makes sure he has new information about resources he may need.  Information gets "pushed" to him -- he doesn't have to spend days and weeks hunting down resources.

Another friend, disabled since early childhood, struggles with the system, with caseworkers who leave or don't get back with her.  She's married and is working (at one of those horrible low-end phone answering jobs) but no one sees any elements of heroism about her and information doesn't get "pushed" towards her.  She can type, so her access is (technically) better than his -- yet he gets more information.

I feel that Stephen Hawking gets firehoses worth of information shoved towards him because everyone would like to rescue him.  I don't know him (or any of his associates) but I suspect he gets more than enough information and offers so that he can choose what fits his needs best.  I think that if he had a question about his device, he'd get prompt and accurate answers.

The rest of us... I'm not so sure about.

In any case, this is one small part of what I've been thinking about in regards to my PhD.  As you see, this is "soft" data -- stories.

It's a Wicked (or possibly Superwicked) problem which means that there is a unique solution for each and every person out there (if there were only 200,000 disabled people, there would be 200,000 accurate "best solutions") so I have to listen for the heart of the data.

There is so much to learn.

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Comment Preferences

  •  Something perhaps to consider re "soft data" (2+ / 0-)
    Recommended by:
    WakeUpNeo, weck

    research is checking forums/groups & becoming a member.  I belong to several (national & international) niche disability & advocacy groups/listservs that have proven to be an amazing source of information, resources & networking.  

    Over the years, others working on PhD or research papers have asked permission to join select groups & gather information from those willing to participate (privately)

    When you consider that some of these groups have thousands of members, you are pretty much guaranteed population diversity and numbers.

    Just a thought.

    •  Can you suggest some for me to look at? (0+ / 0-)

      The more of these I can get information from, the better off I am.

      •  The ones I belong to are specific to children (0+ / 0-)

        with disabilities.  I'll look in my files to see if I have links for adult populations & check with contacts- then will post any I come up with.

        In the meantime, you might check places like yahoo groups
        & AARP website (which has open forums)

        Always a truism:

        The more of these I can get information from, the better off I am.

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