Thursday 10 December 2009
Wednesday 2 December 2009
Compensation or Remediation?
The argument (or perhaps it is better understood to be a "tipping point" in intervention with people with disabilities) of whether to act to change the person, or act to change the world in which the person operates, has a long history, but it is not often talked about. Parents make the conscious choice to move towards one or the other at different times in a dependent's life. This often causes disagreement with people whose job it is to intervene professionally in that child's (or in some cases, adult's) life. The speech pathologist who wants to continue to work on remediation of a communication problem - and the parent who has decided to just let things be. The orthodontist who wants to continue to work on a person's smile - and the patient (or family member) who decides that s/he has spent enough money on braces. The behavioural consultant who wants to continue to work on reducing ritualistic behaviour and the parent who decides that the ritualistic behaviour is just part of the child's unique character and it is not worth the effort needed to eliminate it from the child's repertoire. The self-advocate who opts out of programs intended to remediate, retrain, rehabilitate or otherwise change him (her),and say, "just accept my differences".
Wolfensburger in his exposition of "Social Role Valorization" (see Wolfensberger and Thomas, PASSING, 1983, for example) talks about "Personal Competency Enhancement" on the one hand (changing aspects of the person to better their "fit" into the world that is), and "Social Image Enhancement" on the other (changing the world in which a person operates to change the "fit" of the world around them). Of course, the processes are complementary, and both are appropriate targets of intervention. Their manual for program analysis of service systems' implementation of normalization goals provides a number of examples of how both processes can be utilized to influence positive outcomes for people.
In my view, all forms of intervention can be subdivided into one or the other of these approaches. Diet and nutrition interventions clearly aim at improving personal competency. Legal interventions to gain access to services act more to change the world ("Social Image Enhancement")in which a person operates.
A professional working with people with special needs may become too focused on their responsibilities to change the person for a variety of reasons. One in particular, it is just downright hard to change the world. So an easier route might be to try to make the person fit better. This has been referred to as the "square peg in a round hole" argument. Just shave off the corners until it fits.
Self-advocates are likely to point out that this is the kind of thinking that led to the development of residential schools in Canada for its aboriginal population. This not only did not work, but has been an embarrassment for government, religious orders that sponsored such schools, and a lasting legacy of disappointment, to say the least, for former students.
For this reason, I have long argued that if a professional fails to address, to the limits of their competence and capacity, BOTH remedial and compensatory approaches in their practice, they are failing their client at some level, and this would constitute unethical practice. Not enough so perhaps to report them to their professional colleges or ethics bodies, but unethical practice nonetheless.
Compensatory practices might be exemplified by admonishing other professionals, school personnel, or residential treatment staff, among others, when those individuals want behavioural conformity from a person with learning disabilities that would be unnecessary in a "normalized" or "valorized" setting. I am less impressed with the person who says, using empirically derived procedures, that they can teach a pigeon to play Mozart, than I am by the person who asks them, with all appropriate sincerity, why they would want to do that.
Wolfensburger in his exposition of "Social Role Valorization" (see Wolfensberger and Thomas, PASSING, 1983, for example) talks about "Personal Competency Enhancement" on the one hand (changing aspects of the person to better their "fit" into the world that is), and "Social Image Enhancement" on the other (changing the world in which a person operates to change the "fit" of the world around them). Of course, the processes are complementary, and both are appropriate targets of intervention. Their manual for program analysis of service systems' implementation of normalization goals provides a number of examples of how both processes can be utilized to influence positive outcomes for people.
In my view, all forms of intervention can be subdivided into one or the other of these approaches. Diet and nutrition interventions clearly aim at improving personal competency. Legal interventions to gain access to services act more to change the world ("Social Image Enhancement")in which a person operates.
A professional working with people with special needs may become too focused on their responsibilities to change the person for a variety of reasons. One in particular, it is just downright hard to change the world. So an easier route might be to try to make the person fit better. This has been referred to as the "square peg in a round hole" argument. Just shave off the corners until it fits.
Self-advocates are likely to point out that this is the kind of thinking that led to the development of residential schools in Canada for its aboriginal population. This not only did not work, but has been an embarrassment for government, religious orders that sponsored such schools, and a lasting legacy of disappointment, to say the least, for former students.
For this reason, I have long argued that if a professional fails to address, to the limits of their competence and capacity, BOTH remedial and compensatory approaches in their practice, they are failing their client at some level, and this would constitute unethical practice. Not enough so perhaps to report them to their professional colleges or ethics bodies, but unethical practice nonetheless.
Compensatory practices might be exemplified by admonishing other professionals, school personnel, or residential treatment staff, among others, when those individuals want behavioural conformity from a person with learning disabilities that would be unnecessary in a "normalized" or "valorized" setting. I am less impressed with the person who says, using empirically derived procedures, that they can teach a pigeon to play Mozart, than I am by the person who asks them, with all appropriate sincerity, why they would want to do that.
Saturday 21 November 2009
Autism Eats its Own Young
As a person who has long been involved in helping people with autism and their families, I can't help but notice how "plus ca change, plus c'est la meme chose" (sorry, Francophones, I don't know how to use the proper accents and so on with my Anglophone - tete carre - keyboard). Many of you will know that this means, "the more things change, the more they remain the same".
I refer to the divisiveness, rancour, nastiness, and general hostility that often (thankfully, not always) follows people around when they are involved in supporting people with autism. Now, thanks to the Internet and other means of communicating so effectively, people with autism themselves, gifted as they often are with (at times, superior) intelligence and a unique way of viewing the world, are weighing in with published articles, books, YouTube videos, and so on.
Now, this is true to some extent also for families and friends of people with disabilities of all kinds, and no doubt, many of the same characteristics (of divisiveness, rancour and hostility) apply to both groups - perhaps this is a reflection of the frustrations and pent-up resentments of a lifetime of being treated, on the whole, rather badly. Anyone who has studied with Wolf Wolfensberger knows the full extent of how bad this treatment can actually get. (see http://www.mnddc.org/wolfensberger/index.html).
My point is not to side with one or the other of the positions taken in these hostilities, but to point out that energy, sorely needed to deal well and effectively with the day to day issues at hand, is often wasted in such efforts, with little, to no, positive outcome for those who have the most at stake.
Some examples of the hostilities have been between advocates and opponents of one or more particular treatment methods; one organization or another; scientists and academics or researchers and those who are supposed to benefit from their research; medicine versus psychology; psychology versus social work; and so on.
While this often makes entertaining reading, and even sensational news, the publicity it garners for people with autism and/or their supporters and people who want to help in some way, may only succeed in demonizing people (whether this be people with autism, or the people who allegedly are trying to help) and undermining any advance that might otherwise be possible. It also lets people off the hook for supporting with funding and tax money something that for a variety of reasons, should be much better supported that way than is currently the case in most jurisdictions. Lack of consensus, and in-fighting, and hostilities between groups, undermines the force of argument that any one group would make for anything in particular, and allows people to turn away from any responsibility they might otherwise share toward supporting the cause, as the "ask" is not clear. For example, those who are quite independent and able to manage their lives with autism, (and who are within their rights to suggest that they be more appreciated for their differences and contributions to "different" thought), but who criticize fundraising efforts for those with much more profound troubles getting along in the world, may allow indifferent people to suggest that such help is not needed, nor wanted. This can undermine efforts to raise the necessary support for those who truly need extra help. At the same time, the efforts of groups to state their case about the sometimes tragic consequences of having autism and not getting needed support, may leave in the public perception an image that causes independent and well-functioning people with autism to be treated as objects of pity, menaces, sick, or otherwise burdensome citizens. As an observer of over 35 years now, I believe that I can honestly see the many sides of this issue. I would normally propose that each of these groups speak to each other more often, and more intensively, so that what comes out in the end, serves the purposes of the whole spectrum of people on the Spectrum, without causing any harm if possible!
The status quo, however, does many harms. Above all, perhaps, it takes enormous reserves of time and energy away from more helpful and positive activities. Venting one's spleen may give a moment of private satisfaction, but if this becomes public and used for ill, one has done more harm than good.
Because there is, in many of these debates, typically a polarizing of views more than a genuine attempt to synthesize the information and come to a reasoned and objective, balanced position on the subject at hand, the information is not used for good. One camp does not talk with another camp, but merely posts one after the other of opposing, often inflammatory, possibly quite entertaining, yet most often non-conciliatory arguments, pro or con.
In my position as a "Knowledge Broker", I have a number of challenges when viewing such information. The principle of being evidence-based is challenged when it is pointed out, quite often rightly so, that the state of scientific research is often wholly inadequate to properly inform opinion to one or the other end. More importantly, it is often also rightly pointed out, is this: so-called "scientific opinion" as allegedly the only unbiased, objective opinion there is, can often be shown to be anything but so. Deficiencies in experimental design; inability to measure all of the variables that might affect an outcome; lack of willing research subjects; cost inefficiencies that prohibit some research from even being carried out, let alone published; interpretations that can be challenged; restricted and even biased choice of the very research that is carried out; the political economy of research funding and publication; and so on. The importance of being a trusted, and trustworthy, source of knowledge, is emphasized. But how does one know? One has to be balanced, objective, compassionate, open, and courageous in the face of sometimes harsh, hostile and polarizing opinion to the contrary. Just musing, that's all. There's obviously way more to this than my musings can carry.
I refer to the divisiveness, rancour, nastiness, and general hostility that often (thankfully, not always) follows people around when they are involved in supporting people with autism. Now, thanks to the Internet and other means of communicating so effectively, people with autism themselves, gifted as they often are with (at times, superior) intelligence and a unique way of viewing the world, are weighing in with published articles, books, YouTube videos, and so on.
Now, this is true to some extent also for families and friends of people with disabilities of all kinds, and no doubt, many of the same characteristics (of divisiveness, rancour and hostility) apply to both groups - perhaps this is a reflection of the frustrations and pent-up resentments of a lifetime of being treated, on the whole, rather badly. Anyone who has studied with Wolf Wolfensberger knows the full extent of how bad this treatment can actually get. (see http://www.mnddc.org/wolfensberger/index.html).
My point is not to side with one or the other of the positions taken in these hostilities, but to point out that energy, sorely needed to deal well and effectively with the day to day issues at hand, is often wasted in such efforts, with little, to no, positive outcome for those who have the most at stake.
Some examples of the hostilities have been between advocates and opponents of one or more particular treatment methods; one organization or another; scientists and academics or researchers and those who are supposed to benefit from their research; medicine versus psychology; psychology versus social work; and so on.
While this often makes entertaining reading, and even sensational news, the publicity it garners for people with autism and/or their supporters and people who want to help in some way, may only succeed in demonizing people (whether this be people with autism, or the people who allegedly are trying to help) and undermining any advance that might otherwise be possible. It also lets people off the hook for supporting with funding and tax money something that for a variety of reasons, should be much better supported that way than is currently the case in most jurisdictions. Lack of consensus, and in-fighting, and hostilities between groups, undermines the force of argument that any one group would make for anything in particular, and allows people to turn away from any responsibility they might otherwise share toward supporting the cause, as the "ask" is not clear. For example, those who are quite independent and able to manage their lives with autism, (and who are within their rights to suggest that they be more appreciated for their differences and contributions to "different" thought), but who criticize fundraising efforts for those with much more profound troubles getting along in the world, may allow indifferent people to suggest that such help is not needed, nor wanted. This can undermine efforts to raise the necessary support for those who truly need extra help. At the same time, the efforts of groups to state their case about the sometimes tragic consequences of having autism and not getting needed support, may leave in the public perception an image that causes independent and well-functioning people with autism to be treated as objects of pity, menaces, sick, or otherwise burdensome citizens. As an observer of over 35 years now, I believe that I can honestly see the many sides of this issue. I would normally propose that each of these groups speak to each other more often, and more intensively, so that what comes out in the end, serves the purposes of the whole spectrum of people on the Spectrum, without causing any harm if possible!
The status quo, however, does many harms. Above all, perhaps, it takes enormous reserves of time and energy away from more helpful and positive activities. Venting one's spleen may give a moment of private satisfaction, but if this becomes public and used for ill, one has done more harm than good.
Because there is, in many of these debates, typically a polarizing of views more than a genuine attempt to synthesize the information and come to a reasoned and objective, balanced position on the subject at hand, the information is not used for good. One camp does not talk with another camp, but merely posts one after the other of opposing, often inflammatory, possibly quite entertaining, yet most often non-conciliatory arguments, pro or con.
In my position as a "Knowledge Broker", I have a number of challenges when viewing such information. The principle of being evidence-based is challenged when it is pointed out, quite often rightly so, that the state of scientific research is often wholly inadequate to properly inform opinion to one or the other end. More importantly, it is often also rightly pointed out, is this: so-called "scientific opinion" as allegedly the only unbiased, objective opinion there is, can often be shown to be anything but so. Deficiencies in experimental design; inability to measure all of the variables that might affect an outcome; lack of willing research subjects; cost inefficiencies that prohibit some research from even being carried out, let alone published; interpretations that can be challenged; restricted and even biased choice of the very research that is carried out; the political economy of research funding and publication; and so on. The importance of being a trusted, and trustworthy, source of knowledge, is emphasized. But how does one know? One has to be balanced, objective, compassionate, open, and courageous in the face of sometimes harsh, hostile and polarizing opinion to the contrary. Just musing, that's all. There's obviously way more to this than my musings can carry.
Subscribe to:
Posts (Atom)