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Saturday, September 3, 2011

Self Definitions of Recovery

Recently, I took a class called "Mad People's History" at Ryerson University.  It's a course that explores the narratives of psychiatric survivors, on their stories of their experiences in institutions and outside institutions.  Some of the stories we looked at were those of the leaders in the Survivor movement from the 1970s to today, and how they affect how mental health services are operated now.

As part of our assignments, we had to go out and explore our local "mad" community, keeping a diary as we went to record our observations.  One of the things that I noticed was how mental health organizations used the term "recovery".

Instead of enforcing an externally conceived notion of recovery, it is the clients themselves who defines their goals and terms for recovery.  This returns power to the patient and gives them control over the services and supports involved with their lives. This also rejects the notion that recovery is the same for every person.

What I think is that the concept of recovery is different when applied to different diagnosis. Just like there are different causes to disabilities and disorders, there are different reactions and progression after the onset of disability.  This applies to all kinds of disorder, disabilities and what is considered to be mental illness.

In some cases, the term recovery is apt; it describes the process of regaining, restoring and healing from injury, trauma and disease.  These are the times when the disability is temporary and possibly easy to repair without long term effect.  Such cases may be rare, since even as temporary, the experience can have a lasting effect on a person mentally.

Most of the time, recovery and healing can only be partial, compared to skills and abilities before the disabling event.  These can range from barely noticeable differences to huge developments for a person, and can be the result of a large variety of rehabilitation therapies.  The focus with the use of recovery in this setting is to give the person choice in what therapies to pursue and whether or not they want to undergo treatment, under the person's definition of recovery.  

However, there are also permanent disabilities that the term recovery is completely inappropriate. These are the cases where disability happens early on, either through genetics or other forms of causations, and affects development of skills from the get-go. I'm including Autism, ADHD, and Learning Disabilities, whereas skills and abilities have not been taken away, but rather develops to a different outcome at an individual rate.  In such cases, there is nothing to recover, since those skills and abilities might never have been there in the first place. 

It is not a matter of recovery, and so using the term recovery is completely inappropriate.  A more appropriate term is development.  A diagnosed child with these disabilities is going to develop skills at their own rate, but there is also more conscious involvement of parents, teachers, caregivers and professionals in observing and encouraging the development progress.   At the same time, it is difficult to give an accurate prognosis of a child, since there is little to compare a child to other than other children, which is not an appropriate gauge.  Since each child develops at their own rate, it is more accurate to compare a child's progress by the skills that have been developed so far, and try to use that as, at best, an educated guess at the rate the child will develop.

In any case, since a person with developmental and early-occuring disabilities will be following a more unique and individualized development growth.  As a person progresses, they will be building completely new skills, instead of regaining old skills.  Unlike situations where a disabled person may be actively compensate for impairments, the term recovery is completely inappropriate.  While the use of recovery may empower individuals, it can also de-power individuals.

To use the term recovery in such case is to perputrate the myth that there is or was a "normal" individual that can fixed or cured to the state where a person is no longer disabled.  This is a very medical model of disability, which places the burden of impairment and disability on the individual in a manner that is very victim-blaming.  In fact, in the medical model of disability, a disabled person is more or less a victim, whether by accident, the actions of other individuals, or the genes one inherited from parents.  It is then the responsibility of the individual to take up the burden of disability, and make oneself as less-disabled as possible.  This leads back to the idea of cure and recovery.  


If a person is the one defining recovery and is making decisions on how to achieve recovery for skillls and abilities that are capable of reclaiming and compensating, then the use of recovery is appropriate.  But for in the case where a person is progressing with new skills and abilities, then the term recovery is not apppropriate and should be replaced with more suitable terms such as development and growth.  This way a person is empowered by their own accomplishments instead of being improperly compared to unrelated others and potentially being disabled through the medical model.


7 comments:

  1. Recovery in reference to ASD is concerning to me because it pathologizes something that is in part normative. Where neurological leaves off and normative picks up is also a matter of judgment. So "recovery study" (e.g., of Deborah Fein) itself is a misnomer. It's a psychologist rendering an opinion about what's normal, while not adequately factoring in natural development.

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  2. Something that is often missed when talking about recovery is that it isn't simply recovery from mental illness (or whatever), but it's recovery from "treatment" that has been dehumanising, traumatic and inappropriate.

    And services need to recover from being people, places, practices that did/do that. That's common across all disabilities, I think, some more than others.

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  3. "This is a very medical model of disability, which places the burden of impairment and disability on the individual in a manner that is very victim-blaming" The victim isn't blamed in the medical model, as the causes are out of the person's conscious control. Regardless of the medical model, the person is basically a victim of circumstances, which often include actions of others and genetics.

    "It is then the responsibility of the individual to take up the burden of disability, and make oneself as less-disabled as possible. " It's not an individual's responsibility. The burden is inevitable. All should be responsible in some way for enabling a cure for disability.

    "This way a person is empowered by their own accomplishments instead of being improperly compared to unrelated others and potentially being disabled through the medical model"
    Individuals need the necessary resources to gain accomplishments, resources which affect capacity to develop and grow. The medical model doesn't disable, it explains disability. Others aren't really unrelated.

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  4. Lurker, it's been a while since you've been on here. I see your ignorance hasn't changed. Please actually do some research as to what you're talking about, such as this:
    http://www.dsq-sds.org/article/view/894/1069

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  5. I've been familiar with the social model. I read that link. But that doesn't mean I have to agree with it. Although I don't think disability is so "isolated" or "individual".

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  6. I appreciate this post so much. My husband and I were just talking the other day about the idea that our son (who has autism) is going through the same developmental phases as other children, just at his own pace and with the need for information to be presented in a way he can process.

    That takes so much of the pressure and stress out of the situation and allows us to celebrate each new skill or concept he learns, as well as to enjoy the way he views the world and what he has to offer from his perspective.

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  7. I went to this program that guaranteed to "heal" me so that I would "recover" from cerebral palsy. And other people have said that I need to "recover" from having Satan in me (because I have cerebral palsy). That's where I think one might take religion too far. PS. the Place that wanted to "cure" me didn't work. I just found it de-humanizing. I would scream and cry that it hurt and they wouldn't do anything because this was a therapy program.

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