When my son was young I searched for interventions that would "minimize" his disabilities.
I'm embarrassed to write that now, knowing how important feeling accepted "as you are" is to a person's sense of identity.
I was reminded of this today because I read a study that looked at the images and words used to describe disability and "normality" in marketing rehab technologies.
The 2014 study, which included two Bloorview Research Institute scientists, looked at promotional copy for a hearing aid and robotic gait training used to promote a more typical walking pattern.
The researchers note that marketing material for rehab technology typically "focuses on normalization, [on] correcting or fixing what is perceived as 'deviant' or 'abnormal'" about a body or behaviour.
In looking at the hearing aid and gait training brochures and videos they considered how children, parents and professionals were represented; what was promised; and who had authority in terms of the credibility of the claims.
They found that language focused on the child's impairment. For example, "most wheelchair-bound patients hope for a chance to regain their ability to walk." One video for gait training featured a child getting out of bed, walking and riding a bike with a friend independently. How would a child feel if he or she did the training but didn't achieve these results?
"These images...reproduce discourses of what constitutes a normal, happy life and set a particular standard for how a disabled child might successfully live his or her childhood...These ideas about the right way to live, move and look are likely internalized and other ways of being are constituted as a failure to conform."
The researchers found that the materials promised efficiency in the quest to "fix" disability, including making work easier for therapists and professionals! One of the most powerful messages was that "overcoming impairment was ...the right thing to do, not only from a professional or parent perspective, but from the child's perspective as well."
The materials suggested that children who use the technologies will be more successful, better included and have the best opportunity to "live a normal life."
In the promotional copy "normal is juxtaposed with abnormal, and the messages suggest that normal is good and abnormal is bad."
In one instance a therapist says that "a big smile lights up their faces" when children see themselves upright in a typical gait in the mirror. So how, the researchers asked, are they supposed to feel when they walk away with their own unique gait, or wheel away, from the technology?
The advertising includes endorsements from therapists and other professionals, reinforcing "power relations of professional authority" which may influence families' choices.
The researchers note that rehabilitation has historically focused on "fixing" the individual and that parents' and professionals' perspectives on disability "strongly influence how disabled children internalize what disability means to them."
They question what messages about ability and disability are reinforced in children's rehab settings. "The question we must ask ourselves is whether we unintentionally disable people by our practices and our language, and if so, how can we move beyond this?"
Back to my earlier recollection of wanting to "minimize" my son's disabilities. I don't think I would take kindly to someone telling me to "minimize" something that is a fundamental part of who I am: like how I squeal when excited to see someone, or the fact that I have no hair because an autoimmune condition prevents it from growing.
Think about the ways in which people have historically been encouraged to "downplay" their gender, race, sexuality or any other human variation? Has this ever made anyone feel good about themselves?
The researchers aren't against technology. But they want to know how we can make it part of a value system and dialogue that values and respects diverse bodies and abilities, instead of setting up one as "normal" and "good," and the other as "abnormal" and lacking.
An excellent post, as usual. It is truly a balancing act as to what to try, how to present the endeavor, how to presume success and competence while dealing with the situation when it does not work out.
ReplyDeleteThe heaviest hitting lesson I got regarding language and roles that children/people are assigned when it comes to discussing a condition, came from the fund raising efforts of Jerry Lewis for MD. I watched and supported that telethon for years, and am very ashamed that it did not occur to me how terribly he was hurting those who had MD. I was more sympathetic than most about Jerry's denial of the entire shebang and his comments, because I, and so many didn't get it for all of those years. As heavily entrenched as Jerry was, as long as he was doing this, the results of this highly successful fundraising, made it impossible for him to see the problems in that style.
But so it is with all of the therapies, aids, accommodations, help, fundraiser that are available and are options. Somehow there needs to be some way to approach all of this without stripping away the psyche of the very ones all of this is intended to help.
Complicating the picture even more is the fact that the loud outcry that therapies, ideas, fundraisers, assistive devices harm more than do good may not be true either. It's a new aspect, perspective, but truly relevant for all? Nope. For most? Don't know till a true head count is done. For some? Absolutely. Where one's child or loved one is in those stats is really what is relevant and that is more difficult to assess.
For the purposes of discussion, marketing may have to be separated out. Most advertising is not clever or sophisticated enough to start with the message, You are fine just as you are (your old furniture/clothes/etc are perfectly acceptable, and have nothing to do with the value of your human essence, so please don't feel pressured to buy our___). Of course, people do make comparisons, constantly, on the basis of appearance, talent, skills, power. So maybe a bottom line for developing proactive language and sensitive, supportive perspectives could start with whatever can increase an individual's sense of comfort and spaciousness. I don't like pitting possibility against acceptance; it seems an unnecessarily closed-minded dichotomy. Maybe I'm just stating the obvious...
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