The parents and the brain scans: why learning disabled adults worry about eugenics

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When I was in my late teens, I went into a research frenzy about my learning disability diagnosis. I was diagnosed with Nonverbal Learning Disorder (NLD or NVLD) at 13, but for a long time, all I knew about it was about my own specific learning needs. As a university student I gained a renewed interest in disability and social justice, and realized I needed to learn more about my own context, and about other people similar to me.

I dug out the paperwork from the diagnosis, took some books out of the library, and did a lot of googling. I learned that NLD is one of the least common learning disability diagnoses, that it’s often diagnosed alongside ADD or autism, or other forms of neurodivergence. I learned that most of my childhood experiences of bullying and struggles in school are extremely common among kids with NLD. I learned that almost nothing is written about NLD from the perspective of those who actually carry the diagnosis — one of the main reasons I started this blog.

I also learned that there is only one organization in North America, and possibly in the world, whose mission is focused exclusively on NLD: the NVLD Project.

At first I was excited to learn that such an organization exists. Most other organizations concerned with learning disabilities are also focused on ASD (Autism Spectrum Disorder) or ADD, and because NLD is a less common diagnosis, the unique needs of those of us with NLD get lost in the shuffle. Finding information that’s specifically about NLD is hard, and theoretically the NVLD Project is the organization meant to fill that void.

However, the more I learned about the actual work of the NVLD Project, the more I realized that it’s goals are very concering for adults with NLD.

The NVLD Project has two main areas in which they work. The first is advocating to have NLD included in the DSM (the Diagnostic and Statistical Manual of Mental Disorders, which is the official guideline used by the psychiatric establishment to diagnose everything from schizophrenia to seasonal depression. It gets updated about every 10-15 years).

While there are many structurally oppressive issues with the DSM which I won’t discuss here, the fact that NLD is not listed in it presents a significant barrier for people with NLD seeking accommodation and support. The only reason that NLD has never been in the DSM is because of internal politics in the psychiatric profession. Listing the diagnosis would allow many people with NLD to gain access to the support they need.

While I don’t ultimately believe that psychiatry can save us, the reality is that we live in a world where doctors act as the gatekeepers to most of our needs. Many of the accommodations that people like me need in order to access formal education, as well as a host of other supports that we need, are only available with a formal recommendation from a doctor. As long as that remains the case, this change to the DSM will make a practical difference in our lives.

However, the other major priority of NVLD Project is researching the “cause” of NLD. According to their website, they are currently funding at least two separate research projects that use brain scans of people with NLD to attempt find what the biological “causes” of NLD are.

For adults with NLD, the search for a “cause” of our individuality is deeply troubling. For us, NLD is a descriptive label, used simply to name the unique attributes of how we function. It’s a term that denotes a particular and pronounced set of strengths and weaknesses in how we communicate and how we learn. NLD is not a problem in itself.

For us, the challenge with NLD is that the education system was not set up with our learning needs in mind. Our learning needs are not a disease that needs a cure.

So why, then would we need to know the technicalities of what’s happening in our brains? There is no “cause” of NLD except human diversity. Some people can draw and some people cannot. Some people have blue eyes and some people have brown. I’m really good at verbal communication, databases, logic puzzles, and creating strategy and systems. I’m mediocre at reading body language (and still learning!), I can only learn math under certain conditions, I lose things easily, and I don’t have the capacity to do as many things in a day as most of my peers. This is what human diversity looks like, and I don’t need a brain scan to know that.

We, as people with NLD who are the experts in our experience, know that this research isn’t useful to us. But worse than that, it also has incredible potential to be harmful.

First of all, By searching for a cause of NLD, the NVLD Project is telling the public, including the parents and teachers of kids with NLD, that there is something wrong with us. That we are sick. Whether that is their intention or not, it’s the message they are sending. Because of the leadership role that the organization plays, that message has an impact on how parents and educators think about NLD.

In NLD support groups it’s common to hear from parents raising children with NLD who are more concerned with figuring out what caused their child’s condition than in getting their child’s learning needs met. I spoke with one parent who prays every night for her child to be “cured” of NLD so that she won’t have to deal with the issue anymore. This says a lot about her attitude towards her kid — she thinks there is something inherently wrong with him. Imagine what that attitude does to his self esteem.

Another parent I spoke with would not allow her adult son to use Facebook for fear that he would say something awkward and embarrassing. It is this kind of attitude that stops us from being able to learn by trying things out and making our own mistakes. Low expectations means that he will never get a chance to learn.

Kids with NLD often have a hard enough time in childhood already, but if our parents are treating us like we are incapable and don’t have the right to be who we are, it makes everything far worse.

Kids need their parents to believe in them, to respect them for who they are, to honour their strengths as well as limits, and encourage them to try new things. Disabled kids also need their parents to stand up for them and demand they get the accommodation they deserve and that they are treated with respect. Instead, many parents get caught up in this narrative that the NVLD Project perpetuates: that all we need is to find the “cause”, and then things will get better.

Adults with NLD also have growing concerns about what this trend could mean for our future. Focusing on the technicalities of differences in our brain is a scary, slippery slope towards eugenics.

The idea of a study of our brain scans harkens back to a time when the size of a person’s brain was theorized to correlate with their intelligence, race and “moral standing”. These theories were used to justify the forced sterilization of millions of women in the 20th century, because of their race, class, ability, or even the fact that they had become pregnant outside of wedlock.

Eugenics are still major a threat to disabled people, and we have not forgotten this. It takes a different form now, but it happens. It’s not uncommon for people to abort a wanted pregnancy because they find out the fetus has down syndrome. A couple years ago I wrote about how Canada’s assisted dying laws are being used against disabled people. Our society doesn’t value the lives of humans who don’t make good, exploitable workers.

The NVLD Project states explicitly that their purpose in doing these studies is to “scientifically” validate NLD as a diagnostic category. For of us those with NLD, NLD is a set of learning needs. But the organization wants it to be treated like a deficiency or a disease that needs a cure.

The NVLD Project’s argument for the research project, according to their website, is that understanding the biology of NLD will help validate the inclusion of the diagnosis in the DSM. But that’s completely unnecessary — most of the diagnostic categories in the DSM are not based in biology at all. The diagnosis of depression, for instance, is based entirely on mood and behaviour. Autism and ADD are also diagnosed solely based on learning needs, communication style and behaviours. If only behavioural indicators are necessary for these diagnoses, why would NLD be any different?

This conversation about eugenics has been happening for much longer in the autistic community, although the issues are similar. One British professor of neuroscience argued that it’s important to study the genetics of autistics because it could help lead to earlier diagnosis, which would lead to “better early support for children who are vulnerable to becoming teenagers with poor mental health.”

Again, this is based on flawed logic. The reason that autistic teenagers often have poor mental health is because they are so often rejected for who they are as individuals. Early supports might mitigate that, but what autistics and learning disabled people really need is for their communities to be accepting of who they are, and to value neurodiversity. The assumption this scientist makes is that we can only be inclusive of someone once we know what their diagnosis is, but neurodivergent people get accepted (or rejected) because of the level of openness (or bigotry) of the people around them. This has nothing to do with diagnosis.

We will achieve better mental health when neurotypical people learn to be patient and understanding, and meet our learning needs.

This is a social change that has to happen anyway, and the narrative that we need to find a cause of NLD makes it harder to talk about inclusivity. Encouraging the pathologization of autism and learning disabilities — even inadvertently — encourages the idea that something is wrong with us.

Science doesn’t exist in a vacuum. What is studied, how it is studied, and how the results are used is determined by political realities. The fact is that regardless of the NVLD Project’s intentions, as the far right takes on more and more power in our world, we don’t know how these diagnostic imaging techniques and biological categorizations will be used, ten, twenty, fifty years down the road. They could very well be used by fascists to take away our rights and freedoms.

I’m not against scientific inquiry. But at the very least, the fact that this kind of research is the main priority of the leading organization dedicated to NLD demonstrates a huge lack of priorities and foresight on their part. It takes a lot of money and resources to fund this kind of research, and if their goal is truly to support kids with NLD, these resources should used to develop educational resources for teachers and parents about supporting learning disabled kids, or advocating for the needs of learning disabled adults (an issue that’s almost never discussed).

Parents are often desperate for information about how to support their kids. Why not use these resources to pay learning disabled adults to hold online workshops about NLD? Parents need support in understanding what their kid needs to get through school, how to support them in dealing with their feelings, when to push them and when to be patient and let things go. Perhaps most important of all, parents need help learning to advocate for the accommodations that their child needs. There are almost no resources out there on these topics for parents of kids with NLD — the NVLD Project should be leading the way in helping parents, and advocating for improvements to our education systems.

Instead they’re busy scanning people’s brains.

When neurodivergent people bring up these kinds of concerns, the answer is usually “we’re not trying to cure you, we just want to help”. The problem is, this isn’t the form of help that we need. Adults with NLD almost universally agree that if you want to help us, this isn’t the way. And we’ve been clear about this, over and over again.

Given that we are not asking for this kind of help, there are two possible reasons that the NVLD Project continues to do this research.

The first possible reason is that they are in favour of eugenics. They want to get rid of us. They know they can’t admit that and get away with it, so they’re doing the research so that eventually, they can create the scientific justification for getting rid of us.

Creating the scientific justification isn’t as far-fetched as it might sound. In the UK, “Ninety per cent of people…who know their child will be born with Down’s syndrome [sic] have an abortion.” The scientific ability to test for Down syndrome, coupled with a fear of disability, and lack of support for parents, results in eugenics. This is the same trajectory the NVLD Project is leading us on.

The second possible explanation is that they do not respect us enough to listen to us when we say that this research is not a good way to help us, and there are other forms of support they could be offering instead.

There are a number of reasons to believe this is the case. The NVLD Project appears to have no representation from people with NLD in their decision-making. The members of the organization’s board and staff appear to be mostly psychologists, joined by a few educators and high-powered parents. When I reached out to ask how people with NLD are represented in their decision-making, the person who responded to my email made it clear that they don’t see how or why that would be valuable. The only way they encourage adults with NLD to be involved in the organization is by applying to be a part of their “social ambassador” program, which is essentially a volunteer marketing job.

This is consistent with the attitude of many parents of kids with NLD who are not interested in hearing what adults with NLD have to say. In online discussion about NLD between these parents and adults like me, we often see what has been called the stigma paradox, and it stops parents from being able to listen to the adults who should be their best resource.

The stigma paradox happens because neurotypical people often see neurodivergent or mad people in one of two categories: either as mentally competent and capable, or as incapable, and mentally incompetent, lacking in a true awareness of the world.

Those of us who they believe to be in the first category are perceived as functioning, relatable, productive adults with agency and competence. We are seen as deserving of agency, but our needs are minimized or dismissed. If we ask for support, we might be told that we should leave it for those “who really need it”.

If we are perceived to be in the second category, we are seen as needy, unproductive and mentally incompetent. Deserving of support, but lacking in agency. Certainly incapable of having insight into our own situation.

Any neurodivergent person who dares to speak about our experiences has been perceived as in both categories at different times and different contexts. The categories — sometimes called “likeness stigma” and “non-likeness stigma” are only the perception of neurotypicals around us, and so of course it can be different depending on the context.

The paradox happens because as long as we are placed in these categories, there is no way for neurodivergent folks to speak about the issues that affect us. When we challenge the status quo, if we are perceived to be in the first category, the response is that because we’re not “really” disabled, so what we say isn’t applicable to others. But if we’re perceived to be in the second category, the response is that we’re too disabled to know what we’re talking about.

So if a learning disabled adult uses our lived experience to critique the parenting tactics of parents raising learning disabled kids, we’re either told “you’re obviously not as disabled as my kid” or they assume that our disability makes us incapable of rational judgement and useful advice. This is the paradox: we are always not disabled enough, or too disabled to be allowed to weigh in to the conversation.

Learning disabled adults are only accepted in the learning disability “community” if we never challenge the status quo. The discussion is always dominated by parents, and anything that brings them out of their comfort zone is immediately shut down. Usually the excuse is that their child’s situation is somehow completely different from ours. Occasionally, a parent gets caught saying that we are not worth listening to because we are too disabled to say anything intelligent.

It’s true that we are different from learning disabled kids — but only because we are adults, with the benefit many more years of experience and perspective. Having gone through difficult childhoods, adults with NLD, by the time we are in our 20s, have usually figured out how to get our learning needs met, how to advocate for ourselves, and how to arrange our lives so that they are liveable. We choose careers that play to our strengths, and find friends who are understanding of who we are. We often remain clumsy and cluttered, and many of us struggle with anxiety, but we learn to manage those things. Just like any other adult, we have life experience that we can speak from.

So of course we sound a lot more competent than our younger counterparts! That’s what happens when a learning disabled child has their needs met — they grow up to be an adult, with agency and a well-rounded life (or as well-rounded a life as can be possible in 2019).

(I don’t doubt too that there are learning disabled adults who don’t do as well — most likely because their needs were not met when they were young, or because of the realities of racism, classism or other intersecting forms of oppression. This doesn’t change the fact that disabled adults have a right to agency).

The attitudes of adults who are not interested in hearing our experience are a huge barrier to a better world for future generations of learning disabled kids. We learning disabled adults have unique insights into why learning disabled kids behave the way they do, what works and what doesn’t in helping us get through school, and what social changes are needed so that kids can thrive. Conversations about NLD are far more productive when adults with NLD are involved.

The NVLD Project’s structure, staffing and priorities reflect a culture around learning disabilities where the comfort and desire of parents are paramount, and the stigma paradox makes that impossible to challenge.

The leadership of the NVLD Project claim to be the voice of expertise on the topic of NLD. So far, they have demonstrated that they have absolutely no interest in our input, let alone our control of how resources meant for our well-being are used.

This is terrifying for us. If our input is not even nominally said to be useful (let alone important), how are learning disabled people supposed to trust an organization like this not to allow eugenics to happen?

If what we say about our experiences has no value in informing our own future, do our strengths have any value? Do our lives?

The NVLD Project is not to be trusted. If the leadership wants to try and gain our trust, they could start by putting the research on our brains onto the back burner, and instead using their resources for the things we believe to be important: training for teachers, educational resources that play to our learning styles, working for smaller classrooms, better anti-bullying policies and more funding for education. All we want is to work towards a world where we are allowed to be ourselves and our learning needs are accepted and normalized. If the NVLD Project was truly our ally, they would make this the priority.

This isn’t a problem that is unique to the NVLD Project. Many organizations dedicated to addressing autism, ADD and other learning disabilities have a tendency to prioritize the desires and comfort of parents over the voices of the people who are actually disabled. It is a reality that has to change. If parents and professionals truly care about the inclusion of learning disabled people in our society, they have to start with their own organizations and projects.

In the last ten years, since I started understanding NLD more, I have spent a lot of time with other learning disabled adults. I have encountered such interesting, diverse, and wonderfully fun and engaging humans. Our lives are valuable, not only when we are productive and useful, but always. Every day.

Eugenics is not a remote possibility. It is a reality already, and we have to stop it from further encroaching on the lives of disabled people. As long as we continue to be told we are less valuable, as long as the people who claim to represent us have no interest in our points of view, we will never be safe.

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