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Experiance with assistive technology?

Discussion in 'General Autism Discussion' started by gray22wolf, Sep 15, 2019.

  1. gray22wolf

    gray22wolf New Member

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    Hello!

    I wanted to reach out and see if anyone had an experience that is somewhat similar to mine. I am a designer who sometimes work on medical and disability technology. I have a disabling central nervous system disorder myself and like to tinker with products which might help improve my quality of life. I like being able to monitor my own condition so I know when I need to go to the hospital, so I try to employ home monitoring tech when I can. As this condition is affecting my heart as well as the rest of my nervous system, I buy and play with the FDA approved in-home heart monitors.

    A little while ago I repurposed some sensors to collect more detailed data on what seemed to be a strong worsening of my existing condition affecting my heart. However, the symptoms were intermittent and the new pattern did not show during my in-office EKG.

    I collected data for a while via FDA approved sensors and it clearly showed things had gotten worse. I was having a very bad episode and so went to get emergency treatment during the weekend. I showed the data to the nurse practitioner who saw me and talked about what it meant and (based on my experience with these symptoms in the past) what she should do.

    Well, she took very strong offense to what she termed me “assuming I know more than her”. She seemed incredibly upset that I had dared to bring in and interpret data - even though my main suggestion was that she run the tests herself. In fact, she did run the test, but denied anything was wrong (later review of the tests showed something was very clearly wrong - she just seemed to refuse to acknowledge it). She called me belligerent and unappreciative and walked out right after. I think she felt threatened - as if my using this technology and making observations somehow trespassed on diagnostic territory she viewed as hers.

    This reminds me of a kid I saw who had a text-to-speech software at school. Although it worked well and was intended to allow him to have conversations with his classmates, his young classmates did not wish to talk with him, perhaps because they found the system odd or frightening.

    This got me to thinking - even if the technology one uses to assist in daily life if functioning perfectly, there may still be post-technical barriers which can prevent you from actually achieving the goal.

    I work with an inclusive-design department and think this is important for designers to know. I want to make a presentation on these kind of post-technical barriers for our next departmental conference.

    I would love to hear if you have any similar experiences you would be willing to share. I will not use your name in any way. I just want to improve how we as designers approach designing for disabilities.

    I think the stories would give great insight into how designers need to consider the broader problems - prejudice, social stigma, and more. If you don’t mind me using your (anonymized) stories or comments in my departments journal and conference, please post your ideas and experiences below. I would greatly appreciate it!
     
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  2. Isadoorian

    Isadoorian Well-Known Member V.I.P Member

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    Welcome to the Forums! I hope you make new friends and enjoy your stay in the process! :)
     
  3. Monachopia

    Monachopia ...spiral out... keep going.

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    I'm sorry you've had this experience. It's especially difficult with conditions that are intermittent and don't seem to show exactly when the medical professionals are there to measure it for a minute. I hope you received the help you needed.

    I don't think I have any personal stories to share in relation to your question, but I think I understand what you're referring to. I don't quite know how to approach technology aimed at making quality of life improvements for disability be less stigma inducing design wise - the real issue stems from other people's perceptions and fears. People's instinct is to shun those seen as 'weak', it's an evolutionary trait. I think awareness over the last few years and disabled individuals being more vocal has helped to dissolve that primitive fear, but this still has a long way to go. At the core of it, there needs to be a social and cultural shift for inclusivity and acceptance.
     
  4. BraidedPony

    BraidedPony Enjoying life and glad to be alive! V.I.P Member

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    It's more of a How-to-talk-to-doctors problem. You have to let them think it's their diagnosis, lead them into it.
    Give them info by asking stupid questions.
     
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  5. Aspychata

    Aspychata My Art Work

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    Haha. You are moonlighting from comedy central today l see.
     
  6. Crossbreed

    Crossbreed Neur-D Missionary ☝

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    @gray22wolf , is the scope of your present work biomedical technology, or is it broader than that?

    (I have worked in biomed, before. Nurses don't seem as defensive if I lead with that.)