“We want respect”: adults with intellectual and developmental disabilities address respect in research.

21 Aug

The concepts of neurodiversity are not complex and yet are often misunderstood and misrepresented. Respect is not a difficult concept. The need for research to respect those who are the focus is not difficult.  Respect includes aknowleging that disability does not disenfranchise a person from her human rights. Respect means including the views and opinions of those involved in the research, even if they are intellectually disabled.

Consider this recent study:

“We want respect”: adults with intellectual and developmental disabilities address respect in research.

Abstract Respect is central to ethical guidelines for research. The scientific community has long debated, and at times disagreed on, how to demonstrate respect in research with adults with intellectual and developmental disabilities. To illuminate the voices of those most affected, the author studies the views of adults with intellectual and developmental disabilities on respect in research. Findings are consistent with disability rights’ ideas and indicate that adults with intellectual and developmental disabilities have much to contribute to the discussion, that they value participating, and that they agree with calls to focus on human rights and dignity. Notably, participants spoke at lengths about the nature of interactions between researchers and participants. Implications are discussed, including how to infuse research standards with community-supported values and preferences.

For emphasis: ” . Findings are consistent with disability rights’ ideas and indicate that adults with intellectual and developmental disabilities have much to contribute to the discussion, that they value participating, and that they agree with calls to focus on human rights and dignity.”

Call it “human rights and dignity” and it isn’t a controversial concept. It may not be always followed but it isn’t controversial. Call it “neurodiversity” and somehow it’s a big deal.

One of the misconceptions I’ve read is that neurodiversity is a topic for so-called “high functioning” autistics. Many comments have come through this site calling my child “high functioning” because of the views expressed here. (Those commenters assumed incorrectly).  Here’a something to consider: the study noted above not only focuses on people with intellectual disability, it makes no mention of autism in the abstract.   The study did not even come through in my daily email of pubmed autism abstracts.

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10 Responses to ““We want respect”: adults with intellectual and developmental disabilities address respect in research.”

  1. Saraquill August 22, 2012 at 14:34 #

    …And then someone chimes in with how it is impossible for a developmentally disabled person to have a full or happy life. When someone with such a condition speaks up to correct such a notion, s/he is accused of not counting.

    Yes, I am frustrated.

  2. Roger Kulp August 22, 2012 at 23:26 #

    Anyone else think it’s odd that posts like this just rate a comment or two,but whenever there’s anything related to vaccines,the threads can go on for a week or so?

    • Sullivan (Matt Carey) August 23, 2012 at 15:29 #

      Odd as in our of the ordinary? No.

      Odd as in sad? Yes.

      • Sullivan (Matt Carey) August 23, 2012 at 17:54 #

        should read “out of the ordinary”

  3. Science Mom August 23, 2012 at 18:08 #

    Guilty. I think it’s because these issues aren’t polarising as vaccines are and don’t bring out the naysayers.

  4. Kassiane August 24, 2012 at 08:33 #

    I thought it was because this is news kind of the way “Siberia is cold” is news…

    • Sullivan (Matt Carey) August 24, 2012 at 12:22 #

      Which one is the “Siberia is cold” news? The “people are still pushing vaccine causation and making unscientific claims” or “people deserve respect”?

      I know what you mean, but both claims above can (and have) been made.

  5. Evi September 28, 2012 at 20:14 #

    http://www.cbs8.com/story/19604621/2-men-accused-of-abusing-autistic-man-plead-not-guilty
    Ignorant attorney blames abuse against autistic man on autism itself. Wow. Just amazing. So now it’s the autistic person’s fault for being autistic. And any caregiver that abuses the severely autistic person must be under so much stress that these poor abusive caregivers need counseling and support. http://www.criminal-law-attorney.com/alleged-abusive-caregiver-has-troubled-past/

    Here’s response one person had to this disgusting attorney’s ignorance about autism.

    “It’s interesting that in the video clips shown of these abusive caregivers, in no clip is the autistic young man exhibiting behaviors that would give a caregiver an excuse to abuse the young man. In fact, upon careful analysis, which apparently you haven’t done, you see these caregivers are bothered by the autistic young man’s getting up and needing to be walked, comforted or cared for. Instead of comforting or caring for the young man, viewers see in these clips that the caregivers are busy texting on their phones, sitting and closing their eyes as if trying to sleep or watching a movie on their lap top. Good try Mr. Spital, in attempting to downplay and minimize the horrific abuse against severely autistic people in our community. But we aren’t buying it.” http://www.hlntv.com/video/2012/09/27/caught-tape-autistic-man-allegedly-abused-caregivers

  6. SCG November 4, 2012 at 19:12 #

    Too bad common sense wasn’t simply common. Of course the people you want to involve in these conversations / studies are those who are affected, that is a no-brainer. Adults with developmental and intellectual disabilities are too often painted with the same brush. There are many who could add tremendous value to these conversations. Not only should we respect them and their opinion but be considered lucky they are willing to talk to us!

Trackbacks/Pingbacks

  1. ABOUT Rainbow Brains « ADD . . . and-so-much-more - October 23, 2012

    […] “We want respect”: adults with intellectual and developmental disabilities address respe… (leftbrainrightbrain.co.uk) […]

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