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‘Fixing’ children with medical conditions

by Tabitha Moses
02 November 2016
HEALTH AND MEDICINE
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Children should have the right to choose before being ‘cured’, argues medical student Tabitha Moses.

 

Most students enter medical school wanting to affect positive change. Despite knowing this won’t always be possible, we prepare as best we can in order to provide our patients with the best possible care. So what happens when our desire to treat patients clashes with their future needs?
 
Take the Deaf community as an example. Most hearing parents presented with the opportunity to ‘fix’ a deaf child through cochlear implants choose to do so. 85% say they want their child to be able to listen and talk. Most of these parents are happily obliged by their physicians.
 
There is nothing inherently bad about cochlear implants – countless people espouse the positive impact on their lives. But we should be cautious of a tendency to reactively provide them to children before those children have an opportunity to choose for themselves.
 

Procedures designed to ‘fix’ children rely on the underlying assumption that normalcy is ‘better’. Procedures are designed to help people fit into our preconceived ideas of how a normal person should sense, act and think.

 
Is it truly in the best interest of the child to ‘fix’ them by imposing a medical intervention when they are too young to provide informed consent? Should we first entertain the notion that doctors, scientists, and parents have unconscious biases preventing us from looking past our own conceptions of what’s ‘normal’? Perhaps the child doesn’t need fixing at all.
 
This is especially important given implants, like all medical procedures, carry inherent risks and costs. Although the Internet is littered with feel-good videos of postoperative babies hearing for the first time, we typically don’t learn about the surgery – conducted under general anesthesia. Nor do most people know the implants do not provide sound analogous to the way a hearing person processes, or that it takes months of work to recognise those sounds. There is also the issue that children who receive cochlear implants never have the opportunity to learn sign language or become a part of the Deaf community and culture.
 
None of this is to say treatments shouldn’t be available for deaf children. It is however, to note how many procedures designed to ‘fix’ children rely on the underlying assumption that normalcy is ‘better’. Procedures are designed to help people fit into our preconceived ideas of how a normal person should sense, act and think.
 

Rarely, if ever, did scientists and doctors think to ask the people living with the disability or disorder what they wanted or what they would have wanted as a child.

 
Those with Autism Spectrum Disorders (ASD) serve as a prominent example of the disconnection between those with a condition and those designing the ‘fix’. There is a documented divide between activists who are on the autism spectrum and those who are researchers, doctors, and parents of those on the spectrum.
 
Major US autism nonprofit organisation Autism Speaks had promoted their search for a cure as one of its main missions until October this year in response to pressure from other autism activist groups. Two other nonprofits, Boycott Autism Speaks and Autism Self Advocacy Network, were created by people with autism with the specific purpose for those with autism to have a voice for their own needs and desires.
 
These groups have extensively analysed the standard treatment of children with ASD. Many children with an ASD are sent to doctors to be ‘fixed’. They go to Applied Behavioral Analysis therapy designed for this purpose, and researchers in the field espouse the normalising benefits of early intervention for treatment.
 

We routinely put children through surgeries and tortuous hours of therapies solely to satisfy our own conceptions of normalcy.

 
Most people with autism do not want to be fixed in this way. They have spoken out against ABA and the culture of curing rather than having one of acceptance and accommodation. This seems eerily reminiscent of the days when deaf children were forced to attend daily speech therapy for hours and forbidden from using sign language. Rarely, if ever, did scientists and doctors think to ask the people living with the disability or disorder what they wanted or what they would have wanted as a child. This paternalistic culture of discussing what is best for a certain group of individuals with the capacity to make their own choices without consulting them is found in many fields but is perhaps most evident in healthcare.
 
Since most “fixers” share a perspective of normalcy, we do not stop to question whether these technologies were designed with the patients’ perspectives in mind, or whether they were consulted on their own wants and needs. We routinely put children through surgeries and tortuous hours of therapies solely to satisfy our own conceptions of normalcy. Before choosing this course of action, we (particularly in healthcare) should consider our motivations for pushing these “cures”.
 
While we want to do everything in our power to help our patients, we have to remember their desires may not align with ours. We should never be in a situation where the medical profession is ‘fixing’ people who may never consider themselves ‘broken’ before they have the capacity to consent.
 
Tabitha Moses is an MD/PhD Candidate at Wayne State University School of Medicine and a Research Affiliate at The University of British Columbia’s National Core for Neuroethics. Follow her on Twitter.


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