Relocating the problem of disability: Norm Kunc, Emma Van der Klift, Vikki Reynolds and Aaron Munro

This video explores the intersection of Critical Disability Theory with the principles of Narrative Practice. Norman Kunc & Emma Van der Klift are narrative practitioners who have disabilities; Norman has  cerebral palsy and Emma is Autistic.  In a conversation with Vikki Reynolds and Aaron Munro, Emma and Norman provide two insider perspectives that can help narrative practitioners understand the importance and the process of “relocating the problem of disability.”

 

 

For more information about the work of Norm Kunc and Emma Van der Klift see www.broadreachtraining.com/ 

 

This video was published on 25/09/2015

The following version has been subtitled in Spanish by generous community members.

This Post Has 14 Comments

  1. Fathieh

    This is enriching and eye opening in so many ways. Thank you, thank you, thank you for this! The way that Norm Kunc challenged the idea that the quality of life is linked with the ease of living was mind blowing. I now see how the Western world has adopted this idea and it made me wonder who benefits from us seeing things this way?

  2. Jennifer van Spronsen

    Hi, I just had a few comments. I loved this talk in so many ways. I have read a bit on critical disability theory as I’m a 4th year social work student at the University of Victoria, but this video just opened up so much for me. Good and bad things. Mostly good. I have a mental health disability and three of my children have intellectual disabilities…so I was doing lots of reframing of each of our situations as you all spoke. I know I will be watching this video over and over to deconstruct some assumptions I had regarding disability and then applying this new knowledge to the lives of my family. I do have a few cautions around your discussion of ABA therapy, though. My oldest son, now 24, was diagnosed with severe autism at age 3.5. We were one of those families that did a 30-40 hour a week intervention program. We did it because it was scientifically the best therapy at the time (what we thought) that would give him the best quality of life. I totally get what you are saying about ABA therapy intimating (or shouting) that the person with autism is broken and must be fixed to fit into society, but I think we need to consider not shaming parents who are doing this type of therapy because they are doing it with the best of intentions: to help their children. They are also doing it for their own quality of life too, which we need to be OK with and not reinforce the self-sacrificial special-needs parent discourse. The fact is, quality of life isn’t just about the child, it’s about the parents too when you have a severely disabled child. If your child can be taught not to run head-first into a wall thirty times a day, or not shriek for 20 seconds out of every minute, that parent is able to function, to have a shower without getting a babysitter, to go out in public without worrying someone is going to hit their child for screaming so much, to not worry that their child may harm himself or others. Another thought, along the same lines, is that Emma is very high-functioning on the ASD spectrum and may not be in the best position to speak about those on the severe end. So I’m thinking of the kids that might be a danger to themselves or others, I’m also thinking about my son who babbled nonsensical words for 35 secs out of every minute of his waking hours (Yes, we took data), and though that isn’t dangerous, when he was doing that, he wasn’t doing anything else. He wasn’t interacting with his brother, or learning the names of things, or giggling from getting tickled, or learning to butter his toast…if we had let that go as part of his autism and taught ourselves and others to be proud of it and not “fix it”, well I think that would have been a disservice to him. I’m so excited about the ideas represented in this video, but also needed to share those thoughts as well. Perhaps 40 hours a week was not necessary, but now Luke reads (and enjoys it), competes in mini-triathlons with neuro-typical people (and loves doing it), and has a sense of humor, likes to tease…and I don’t think he would be doing any of those without the ABA therapy…so that’s my 2 cents worth. just keeping it real. I will be following your videos and writings from now on
    Thanks for listening
    Jenn

  3. pam

    A big thanks to you all – this thoughtful video topic really encourages me to be further alert to the areas that interconnect / intersectionality.- ‘breaking down the oppressions so that peoples ideas get more room’. These words/ideas excite me as I’m currently engaged in working with support /carers to explore the context of the topic sexuality and disability. i watched the video and i love it…it took me to ideas of:

    -importance to delve into the histories in understanding the powerful discourses that effect us in our places in society aka how we are invited to think negatively around disability
    -intersectionality and how connecting oppression can break them down so that peoples ideas get more room – and potentially generate more opportunities
    – relocating the ‘problem,’ = again reconnecting to the first point
    – presumptions in our western privileged society that if we make our life easier or have an easier life we have more quality…harder isn’t necessarily less quality…Love, love, love it!

  4. Ron Koros

    A very important message. Hope it reaches a wide audience. I know you guys are spreading the word with your traveling road show. Hard concept for people to get.
    -Ron

  5. Laurel

    I get it! It’s about regarding diversity; about making certain that all voices are heard when a decision is made; about dropping labels, dropping the “norm”, stopping the diagnoses or anything that contributes to the separation. We are one humanity (one light) with many colours (contributions of diversity) that make it up. We must regard the ways in which we individually and collectively contribute to the underlying narrative of difference; the difference that separates and harms.
    I appreciate this insight. Thank-you.

  6. Georgios

    Thanks for posting this great video! And also thanks for subtitling it! Following natives speaking English is often troublesome for un, non-natives 😉

    Many ideas and emotions from this video. First, it made me think of how easily I can (now, after 7 years of working in a psychiatric setting) think about the “the problem is the problem” view as far as psychiatric patients are concerned (I had to use this word to accommodate with the setting I work). It also made me think on how difficult it is for me to think in this way about people with somatic health issues or with disabilities. When I see a person diagnosed with cancer, should I not help her/him grieve over the “lost” ideal of a healthy body?

    I liked a lot the idea about revolution coming when people define the problem in a different way. Do you have any ideas about how one re-defines the problem? What circumstances are necessary for such a change? And what are the steps and the abilities that people bring in such a process?

    I also enjoyed a lot thinking of the ramp as an architectural error. It kinda fitted with my idea that my home town is built wrongly, because it is not helpful for people with disabilities (or babies, or umbrellas for that matter!). When I share this idea with people, some of them claim that there are more urgent matters to spend money on, and this is definitely an exclusive way of thinking.

    Most of all, this video made me wonder about the narratives about “non-normality” that I are dominant in my mind. On the one hand, I am trained in narrative therapy and I thought I am not favoring normality. Well, after this video, I have to re-think about that!

    Thanks again!

  7. Mariangels Ferrer Duch

    Dear Norm, Emma, Vikki and Aaron

    Thank you very much for this inspirational conversation. I saw Norm and Emma in Adelaide a year ago and since then I have been thinking in ways to bring to my work some of their ideas.

    I work with the world of genetics and genomics that is rapidly evolving. To remind myself about that a ‘harder life does not have less quality’ means that I can position differently in front of the very biological/medical discourses that I am surrounded.

    Also it helps ‘relocating the problem from predominant narratives of deficiency to the more liberating ones of diversity’. The message in genetics is that ‘our barcode of life is very diverse’ but also that science is ‘working for us’ on making all the ‘deficits’ disappear. Well, would that, as Vikki said ’make more space for diversity’? As we know more about our genetic map people are questioning having been born in a body with a ‘wrong set of genes’. As Aaron said there are ‘shared experiences’ for most of us. While science is working on it I keep the idea of seeing these ‘forced limitations as liberating limitation’ and work with myself and others to question the real gains and losses of being ‘cured’.

    Mariangels

  8. Akeiko Rawn

    It was in 2011, that I first shed tears of ignorance hearing Norm give a keynote. Since then it has allowed me to walk a little lighter, but more importantly,creating new space to situate myself within my work.

    I would add to the phrase ‘therapeutic violence’ that there is uninentional educational support oppression that occurs.

    Neurodiversity is a concept that centers my conversations, thinking and holds me accountable to the ways in which I can lobby for a different kind of support offered.

    Aaron – thank you for the phrase ” I’m so sorry you are not like me” – indeed when flipped back it seems rather absurd. I will try it out and let you know what happens.

    I think what would be lost, is something none of us can afford.
    Great to hear all of your voices once again.
    ~Akeiko

  9. Will Sherwin

    I really enjoyed this conversation, thank you for everyone who worked on it, including those of you behind the scenes 😉

    “to relocate the problem means we go from the presumption that people should not be disabled into the idea that disability is inherent part of the human experience. Bodies break down. Accidents happen. This idea that we should be non-disabled throughout our lives is delusional.”

    Yeah, I agree. I don’t hear people talking about this though so it’s just been a fuzzy half-thought in my mind until this talk. Thank you!

    “When you’re living in an affluent Western culture it’s really easy to get sucked into this idea that the quality of your life is necessarily connected to the ease of living.” — Norman Kunc

    I have also been thinking about what Vikki Reynolds said about people at the margins who find ways to have more space in their own lives also make more space for those of us in the center. Love the spatial metaphors. May everyone who feels cramped have enough space 🙂

    Will

  10. Marta Rivera

    Hello:
    Thanks for sharing this video with the experience of Norm, Emma en Aaron, and Vicky. I liked very much what you said of being different and questioning the concept (sorry spanish is my language) of “normal”. When i listen about having difficulties, i just thought that difficulties are part of life for everybody that is alive. Sorry i don´t have words to say it enlighten me, in many ways that will help me in my work and in my life and the life of my family, some of my brothers have a very sever myopia . I liked very very much and i share it with a cousin (prima) that has two children different one with autism ando the other with cystic fibrosis, and she had share pictures with us about the joy is in their family (they live in another city). As you say there is joy and there is struggle, as in the life of each one of us. Thanks very much for sharing.

  11. Jenny Simons

    First of all,thank you Norman and Emma for sharing your thoughts and perspectives about disability. I appreciate Norman very much, but my experience is more with people along the autism spectrum, and I have questions for Emma: what strengths do you have from not going through the behavioral adaptation programs used today? How have you developed your perspective about these programs? Do you know what groups in the US are questioning these “evidence based” practices? What are your thoughts for parents who are faced with insurance non-payment if they question these approaches? What have been some of the most helpful people or programs for you? What are some of the ways you think about your frustrations with autism?
    I have a whole other interest: how did the two of you meet? What discussions did you have that made you know this was a partnership you wanted? for either of you, how does your perspective about your disabilities support one another? Help one another? How important do you see this as part of your relationship evolving?

    I suggest there may be a follow up session ???? for those of us working with couples this would be so useful to see/hear, if it is something you would be interested in?

    1. emma

      Hi Jenny,
      You’ve asked a lot of questions, so let me see if I can take them apart to answer. First: how have I gotten strengths from not going through the behavioral adaptation programs available today? That’s hard to answer, because I don’t know who I would have been had I been subjected to, for example, ABA. The strengths I have are perhaps a greater sense of autonomy, a fundamental sense that I have the right to be Autistic. I don’t harbor any resentment to my parents for subjecting me to remediation, unlike other Autistic adults I know, because they didn’t. My parents were bemused by my quirks, but didn’t try to remediate me. They just thought it was an artistic bent :-).

      But, apart from this, the question is a bit odd. Imagine asking a hypothetical soldier what strengths they might have gained from not being tortured? If this seems hyperbolic, please understand that much of my understanding about the impact of compliance based therapies comes from my conversations and the accounts of Autistic adults. Many of the people I know who have undergone such therapies now struggle with PTSD.
      Second question: My perspective comes from my conversations and the rich relationships I have developed within the Neurodiversity community.

      With respect to which groups are questioning the efficacy and ethics of so-called “evidence based practices”, they are largely grassroots neurodiversity groups. I can link you to some of them below. It is very difficult to counter the voices of those who are invested in these practices. Please see Lydia Brown’s special report to the Rapporteur on Torture to the UN. http://www.academia.edu/6413462/Compliance_is_Unreasonable_The_Human_Rights_Implications_of_Compliance-Based_Behavioral_Interventions_under_the_Convention_Against_Torture_and_the_Convention_on_the_Rights_of_Persons_with_Disabilities
      Look at page 202 for Lydia’s chapter.

      I understand the problem that some parents face with trying to get financial help outside the confines of the ABA approach – I do know that there are people who call themselves ABA therapists who try to do things differently, in order to qualify for funding, but I’m still concerned that many of these “better” practices are still based in coercive behaviorist ideologies. No easy answers here.

      THe most helpful people for me have been other people with disabilities. And this is true for many parents as well. It’s only when they contacted Autistic adults that they gained a new perspective. I will provide some links at the bottom of this thread.

      With respect to the idea of frustrations – I think that the worst thing before I found a community of people who understood my struggles was that I saw my difficulties as moral failings. People have asked me why I wanted a diagnosis – why label myself? In fact, the label took away the idea that I was broken and in need of fixing. I was able to understand and explain a lot of things about my life.

      And finally, I had to laugh about your last question. I was married twice to men who might be considered “neurotypical”. I was always considered “too much” for them (too intense, etc.). Norm and I met around social justice issues. Probably the most important piece for me was listening to Norm talk about the right to be disabled – something I thought referred to other people, not me, until I realized that I was Autistic (girls often remain undiagnosed for many years for a variety of reasons). We co-exist beautifully because we do not try to remediate each other. 🙂

      Here are a few blogs you might be interested in:

      Diary of a Mom
      Autistic Hoya
      Emma’s Hope Book You can find them on line, and then link to many others! Best wishes, Emma

  12. Cathy Richardson

    Hi guys, I love your work. My eyes have been radically opened around disability issues this past year, rolling around Montreal and Europe in a wheelchair. I love that these issues are being explored from various social justice perspectives. I have also learned that the category of “disability” is a mixed bag/mixed gift…. half the time people are so lovely, generous, kind to me and half the time structures are non-accommodating, hateful and frustrating. Thanks for your good work!!! Cathy/Kinewesquao

  13. Mahamati

    This was great to see. Have had a life coloured by disability and difference. Blind father, OCD mother, polio survivor, lesbian. But all these life experiences are valued. I am currently working on a film about polio epidemics of which I was part of in 1948. The main message I got from this video is one I believe in…”embrace the difference”

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